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Women's Birthing Rights, Women's Bodies

The Ashley Treatment


There was an article in the Seattle P-I last night about a young girl named Ashley who is undergoing a treatment dubbed the “Ashley Treatment.”  According to her family’s blog , she has a condition called “‘static encephalopathy of unknown etiology’, which means an insult to the brain of unknown origin or cause, and one that will not improve.”  She is now nine years old, and would have been expected to attain adult height and size.  She “cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way.”   She will never develop mentally or cognitively beyond three months of age, but is expected to have a normal life span.

She has become the first person like her to have the treatment the family’s blog describes below:

The “Ashley Treatment” … includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley.

The family’s reasoning was as follows:

A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.

The family goes on to say that these treatments will allow Ashley to remain a size which enables them to hold her, take her with them many places, carry her, and bathe her easily (4’5″, 75 pounds).  They believe it will reduce the chance that she will be sexually assaulted by caregivers and will eliminate the pain and difficulties of menstruation.   She began to develop signs of puberty at six years of age, which is when the family worked with doctors to begin the treatment.  The family intends to care for her at home always, and says she would have been cared for at home always regardless her size, but that being small will give her options she wouldn’t have had had she grown to full adult size.  It sounds to me as though this is a Christian family; if I were a betting woman, based on the way they say what they say about God, and based on their reliance on doctors and traditional medicine, I’d say they were Roman Catholic.  They seem to be devout Christians.

For my part, I think this is horrifying.  It is particularly odious to me that the parents felt the need to remove Ashley’s breasts (because she didn’t “need” them) and her uterus (ditto), and that fear of their daughter being molested by caregivers figured heavily into their decision.  

What have we come to that we will remove a young woman’s breasts and reproductive organs to increase the likelihood she will not be abused by “caregivers”?  What have we come to that we think removing breasts and reproductive organs will keep any child or any woman safer from sexual assault?  How is it that the belief is, it’s the breasts and the body which invite the abuse, as opposed to the misogyny and depravity of anyone who would sexually abuse anyone, but particularly a vulnerable, disabled girl or woman?  How is it forgotten that babies are sexually abused, toddlers are, small children are, little boys, little girls, all the way through old women, all the way through animals, all the way through corpses, are sexually abused, and in these assaults, the presence of breasts, or not, or uteruses, or not, or human bodies or not, or living bodies, or not,  matters not one whit.  Why aren’t we insisting that caregivers not be sexually predatory? Why aren’t we insisting that no one should ever be sexually abused again, and donating ALL of our available resources to that end?

How is it that if a girl isn’t going to breastfeed she doesn’t “need” her breasts?  Who says?  How is it that if a woman isn’t going to bear children, she doesn’t “need” her uterus?  Who says?  Since when are breasts only about breastfeeding and uteruses only about babies, to the point that we will cut a girl or woman up in repeated major surgeries  if she’s not going to be doing either?  Without asking her?  If any of us were asked whether we’d be up for having our breasts cut off and our uteruses cut out because we won’t be using them anyway, what would we say?

What if we could ask Ashley what she would say?  And understand her response?  Would a nine-year-old agree to these irreversible, life-changing procedures?  On what basis do her parents, or her doctors, make that decision for her,  if not?

Here’s what stands out to me, though:

The objection that this treatment interferes with nature is one of the most ridiculous objections of all; medicine is all about interfering with nature.

Herein lies our problem.  Here the family makes a point that, because of our failures to think and act in ways which are feminist and woman-centered, in ways which value women’s lives and bodies,  we have no good answer for.  As the family points out, we have come to a point in history where not only is it considered foolish to even consider “nature,” doctors, psychologists, scientists, drug companies, geneticists, regularly, recklessly disregard “nature” in favor of surgeries, hormone treatments, invasive procedures, experiments, “treatments” of all kinds, without a clue as to how those who are beng “treated” might  actually fare in the future, without any consideration as to what this might mean for girls and women.  They do what they do because they can.  There is no one to stop them.  Especially not feminists.

What is going to be the objection we raise now, as feminists, to this treatment, given that as a movement, we have not been objecting to the anti-woman abuses of patriarchal medicine, science, and psychology all along?  Now that, as feminists, we’ve consistently ignored the abuses of procedures like hysterectomies (done needlessly most or much of the time), c-sections (ditto), mastectomies (ditto), now that feminists have offered defenses of in vitro fertilization, surrogate motherhood, hormone treatments, invasive, dangerous reproductive technologies of all kinds, now that feminists have defended the donating of eggs, now that feminists have defended sexual reassignment surgeries and hormone treatments and cosmetic surgeries and gastric bypasses–  not all of us, it’s true, I sure haven’t, this has been my soapbox for years, but most feminists have —  well… what’s our basis going to be for objecting to this procedure?  Or any similar procedure?  

Based on what I’ve read on feminist and progressive blogs so far, most feminists don’t have any feminist or woman-centered basis for objecting to this procedure, not really.  Some arguments about slippery slopes.  Some arguments against objectification of the disabled.  Not much more, that I saw. 

We needed, as a movement, to be objecting to the invasive, misogynist procedures of patriarchal medicine, in unison, loudly, years and years ago, decades ago. Some of us were, have been and did, and have been roundly trounced for it, including by feminists and progressives.

This is the result.  One of many, I am very sure, similar results to come.




254 thoughts on “The Ashley Treatment

  1. it is difficult to talk about unnecessary c sections and the medicalisation of childbirth. it is something ive been wanting to write about for a long time but havent because ive already had problems with friends in rl over childbirth discussions. it’s a whole big can of worms – another one of those “you’re depriving women of their ‘agency'” discussions. somehow when you argue against the medical model for childbirth you are depriving women of their ‘choice’, presumably their choice to have no choice, iyswim.

    i dont go for my smear tests either. i get letters about them often, i havent had one for maybe seven years now. i know the risks im taking. but i went through so much hell with visits every three months for a couple of years, lying with my legs in stirrups, scared shitless i had cancer in my early twenties, getting some undescribed laser treatment that i didnt understand. all because of these “pre cancerous” cells. i would rather take the risk of possibly developing cervical cancer than be convinced i have cancer when i dont.

    i think we, as women, dont talk about this stuff as much as we should because we’re scared of hurting each other, of coming across as judgmental. it’s what stops me from talking about it, so i figure it must be true of other women too.

    Posted by v | January 5, 2007, 9:58 pm
  2. Sorry for the lower case, I didnt remember until I’d already sent.

    Posted by v | January 5, 2007, 10:00 pm
  3. Oh no! V, you can use lower case all you want!


    And SO TRUE what you say there. It is very hard to talk about these things, a real minefield. I have wondered sometimes if the reason one in three young women has HPV, the precursor of cervical cancer, might be all of these many pap smears! It sure wouldn’t be the first time going to the doctor made people sick. That’s one reason I stopped with the “well baby” visits. Every time I took my healthy baby for one of these, she got sick!


    Thanks, Amy!


    Posted by womensspace | January 5, 2007, 10:05 pm
  4. I don’t like what they’re doing, but they are doing it in order to care for her more easily and keep her at home. Caregiving is one of the most thankless, painful jobs, least-valued, and least-helped jobs on the planet. Short of pain-causing abuse, I’m reluctant to castigate the caregivers too much.

    Posted by Miranda | January 5, 2007, 10:07 pm
  5. Yeah, Miranda, I know. That’s kind of why I wanted to get past the caregivers’ decision to the reasons that decision can be made in the first place. Years ago we needed to be, in unison, hollering about invasive, misogynist surgeries and procedures and insisting that sexual assault, but particularly caregiver assault END. It’s as though we think it’s inevitable! And because nothing is really done about it, it IS! Yet we can destroy entire nations (Iraq), no problem getting the resources together to do that!



    Posted by womensspace | January 5, 2007, 10:13 pm
  6. Really liking your feminist, woman-centred understanding of this situation. I’ve been struggling with formulating my thoughts coherently beyond ‘No! Wrong!’ and your post is helping me get there. I need to read it again when my brain is less mush.

    From a ‘disability’ point of view I know exactly where I’m at, but I know there is so much more to this – with Ashley being female as vital in the whole process, it’s central to why this has been done.

    Thanks for this post.

    Posted by incurablehippie | January 5, 2007, 11:17 pm
  7. Yeah, incurablehippie, your brain may be mushing right now, but your gut is right on.

    And thanks!


    Posted by womensspace | January 5, 2007, 11:26 pm
  8. “Why aren’t we insisting that caregivers not be sexually predatory?”

    Wait, what? We ARE. And in a perfect world, that would be the end of it.

    But we still need to realize that sometimes, we need to protect ourselves even when we shouldn’t have to. That’s why we look both ways before we cross the street, even when the cars should stop. We can’t always trust others, so taking further precautions is a logical step.

    This procedure is not an attack on femininity, and I don’t know what makes you think that it is.

    Posted by Cyberpunk Hero | January 6, 2007, 12:32 am
  9. I don’t think they’d have done this if A was a boy. They would have looked for other solutions. A lot of people won’t even neuter their dog (as opposed to bitch) and it has nothing to do with Eeek! surgery or we can’t afford it, because surgeries on pets are just booming. Vets will now do anything on pet dogs that is done on humans.

    Will the parents be there in 25 years from now, will both of them still be *able*, have the money to have one of them at home, the blessing of the neighbourhood for the mods to the house and grounds (don’t count on it). What if one of them gets cancer, another pregnancy, loses the sympathy of their family friends church etc. People are great for the short term generally, but esp when they made this choice, there may be repurcusions among their support group.

    But if they can pull it off I don’t doubt she will be safer there, and not just from sexual assault which as someone commented can happen whether she has a uterus or not. And by the way, that uterus (and her ovaries if they took them too) provide valuable hormones throughout a woman’s life (no matter what her cognitive capacity) for ex removing ovaries begins a slide into menopause, inevitable bone disease because she cannot exercise which is the only true prevenentative from osteoporosis. And are they giving her those bone killing drugs which eat your jaw, and case the pelvis to crush (that’s the ones that are supposed to save our bone.)

    So if they can pull it off, she may be saved by something like this, and please not that the care of any disabled hospitalized chronic care person is modeled on the care of the aged in our culture:

    I spent the better part of Wed and Thurs into the morning helping a deaf friend help HER hard of hearing friend, who was in a nursing home ($5000 a month private), had been there for 2 1/2 years, coming from another nursing home which had been unsatisfactory. My Deaf friend needed me as a hearing ear. She is life Deaf, not hard of hearing. She can “read me” when I speak to her, so oftentimes I ‘interpret’ for her, when she must communicate with hearing people unused to her. She can usually read some other people too, to varying degrees, but the staff at the nursing and chronic care homes now are foreign, and she cannot “read” an accent.

    When talking with members of her Deaf community, she uses American Sign Language.


    The friend in the nursing home, wasn’t in her nursing home room. She had been taken to hospital 15 miles across the city for a doctor to look at her ankle. Infected, some time, geting worse. Looking around her room, we saw her hearing aid and glasses had not gone to hospital with her. We decided to drive to the hospital and take them to her. Can you imagine being in hospital and not being able to see or communicate? No one with you?

    We left them for her, as she was in radiology when we arrived.

    I learned this afternoon, that the woman will have her leg amputated this weekend.

    How did an infection get to an amputation in a few days? Because they are not monitoring their patients, because our culture disposes of the elderly and the disabled. They don’t count.

    So if this had been my child, so help me I don’t know what I’d do. And please believe me when I say, this was not a rare occurrence. And I repeat, this was a $5000 a month nursing home. The women was a professional of some note all her life. She never married and has no children, but must depend on her other elderly and disabled friends to look our for her.

    Posted by Pony | January 6, 2007, 12:32 am
  10. I wonder if a boy’s testicles would have been removed and drugs given to stunt his growth. Why do I know the answer to that is no.

    This was not an attack on “femininity” (femininity deserves to be attacked), it was an attack, on girls and women, not by Ashley’s family, which is doing its best, I believe, but by the same patriarchal institutions and systems which attack girls and women ALL of the time.

    As to caregivers, if we wanted to be sure that no caregiver ever sexually assaulted a woman or girl, no caregiver ever would. Our culture, our society, just doesn’t care enough. Regardless, the way to address sexual assault and abuse is not by surgeries to remove breasts and uteruses! Dear god, that is macabre.

    That story you tell of your friend is hideous, pony.


    Posted by womensspace | January 6, 2007, 12:39 am
  11. And of course, the careless “care” the elderly woman received was not an attack on “femininity” either. Want to guess who makes up the VAST majority of the incapacitated elderly? There is a reason the care is so careless. Who cares about women, who are not attached to a man, are too old to get anyone’s dinner, and have outlived any cultural use we have for them. In the dining room, where we first looked for this woman, there were about 60 people having dinner, or being fed. None was male. All the caregivers were women too. Foreign women, who really don’t want to be working the shitty jobs in the chronic care centres (where Ashley would go) or the nursing homes. That’s reflected in how they do their jobs. The fact that they are foreign means they are not understood, do not really understand much of what is said to them by people who can’t speak well, etc. They aren’t hired for their command of English. Of course why they are here is another thread altogether.

    Tangent or mabye not: Also made some phone calls for yet another elderly lady today, to assisted care apartments. Part nursing home, part independent apt. The lady I was doing the calls for doesn’t have much money so I asked about subsidy. On no we have a lot of doctors and professors here. I couldn’t help myself. I told her this was a doctor’s wife (before he ran off with the nanny), so she wasn’t going to be able to live anywhere without subsidy.

    Posted by Pony | January 6, 2007, 12:54 am
  12. I wonder if a boy’s testicles would have been removed and drugs given to stunt his growth. Why do I know the answer to that is no.

    My male cousin who had some sort of disability…possibly Downs, but I don’t think so…was castrated because his mother feared that when he hit puberty, he wouldn’t be able to control himself around women. This was done, 40 years or so ago, and I know that anecdote doesn’t equal data, but just saying.

    I understand what you’re saying about removing her sex characteristics not keeping her from being molested, and it’s horrible to think that her parents feel it necessary.

    Women’s sexuality has been mutilated in the name of ‘saving’ them before. Hysterectomies for emotional trouble, for example, or sterilization for women who were perceived as promiscuous…often for having been raped.

    But in this case, more than an attack on femaleness, I think it’s a statement on the hellish difficulty of caring for the chronically, badly disabled. The parents have fetishized and made an icon of Ashley, and called her their ‘pillow angel’, and reducing her to being a constant child, probably because it’s the only way they can reconcile what has happened in their lives.

    Certainly if they admit anger or resentment, or even that what has happened to them might be something other than a ‘blessing’, they will be castigated and outcast as evil and uncaring.

    Professional caregivers are damned hard to find. Very few people want to do that as a career.

    Posted by Miranda | January 6, 2007, 1:04 am
  13. As for removing her breast tissue, apparently there is breast cancer on both sides of her family, and they are trying to mitigate her risk. They are removing her uterus to spare her the (probable) discomfort of menstration.

    It’s not a good solution, but in Ashley’s case there isn’t a good solution. I think her parents are doing the best they can.

    Posted by Miranda | January 6, 2007, 1:40 am
  14. Miranda when I was a young teen, the daughter of friends with some mental disability, age of consent but really, with the age of about 10, was forceably steralized by her mother (a single mother). The daughter was stunningly beautiful, tall, blonde curly hair, green eyes and peaches and cream complexion. Well developed. Men of all ages were preyed on her. She, thinking they cared about her, was easily coerced by these unscrupulous men, from young teens to men in their 60s. Alone and in groups to leave her stumbling home from the town gravel pit in the middle of the night etc. All the mother could do was prevent pregnancy. She had it done. I never heard one word against it among all the adult conversations I overheard. I’m sure some of those men who thought it was fine had used her and planned to do so again.

    Posted by Pony | January 6, 2007, 1:53 am
  15. Long-time lurker, first-time (I think) poster, here. Heart, I’m a great admirer of your writing!

    It hurt my heart to read about this story — the idea that removing a woman’s breasts would somehow protect her from sexual assault. If I believed that, I would’ve had a double mastectomy years ago. My breasts are relatively small; that was no deterent to the man who raped me.

    Posted by SingOut | January 6, 2007, 1:56 am
  16. I agree, thanks for putting the arguement across in a coherent way (I too am having trouble even figuring out what to say!). I am a deaf woman and have to deal with other people’s misconceptions of what deafness means. And with what disability means. There are a lot of different deaf people out there – all individuals, all with different ways of communicating like Pony suggests.

    I cannot believe that parents would even THINK of doing such a procedure on their child! I mean, what about human rights and women’s rights and disability rights? Where were the sane voices in the decision that these people made?

    That’s the extent of what is going through my head right now :-S

    Thanks for writing this.

    Posted by Liz | January 6, 2007, 2:36 am
  17. And I think that its the worst kind of human atrocity to operate on someone so that someone else doesn’t have to deal with the aftermath of something that may happen to a person in their care.

    I know I can’t begin to understand the complexity of having a child with a mental or physical disability (or both) but I understand that if somebody does, it’s the world’s fault for treating them badly and not understanding them – not the fact that they have a disability (although I loathe that word, disability).

    For example – I wear hearing aids and was diagnosed deaf at 6 years old (I had covered it up well). My parents could have chosen to impose a cochlear implant on me but decided to wait until I could make that decision myself. I know it’s not the same as possibly never being able to make that decision like A but it’s the same kind of principle.

    I’m not making much sense at 3am in the morning!

    Posted by Liz | January 6, 2007, 2:45 am
  18. All the mother could do was prevent pregnancy.

    That’s terribly sad. At least there are some more laws now in place to help, but there weren’t then. I don’t agree with forced sterilization, and I can see how it could very easily be misused, but ideas and theory about agency, while good and right, can get lost in daily life if the situation is bad enough. It’s cold comfort.

    Liz, Ashley is at the mental state of an infant and will never improve. Her parents aren’t acting out of malice towards her or for their own convenience. If all they cared about was convenience, they would put her in an institution.

    I feel sorry for everyone in the family, including Ashley’s siblings, who have a high probablility of having their own lives swallowed up by her care. No one’s fault. Everyone’s pain.

    Posted by Miranda | January 6, 2007, 3:46 am
  19. Welcome, SingOut, and thanks! And Liz– thanks for your good thoughts. Although I really do feel for the parents and family for all the reasons you say, Miranda, and though I agree, they’re doing the best they can with the knowledge and information they have, and though I don’t really blame them, I blame our patriarchal, misogynist, woman-hating, ableist, child-hating culture, I can’t do justice to what a travesty this is, and beyond that, what an abject, abject failure of feminism! We might not have been able to change society enough to prevent this kind of thing, but at LEAST, at LEAST, we could have been a force to be reckoned with, dogging the medical/psychiatric/drug establishment until they begged for mercy. See, that’s what gets me. I’ve been crying in this fucking goddamn wilderness since I had my first child and realized what patriarchal medicine does to women and children and teaches and thinks about women and children, what the pharmaceutical industry does to women and children (and I am not talking about the courageous, amazing, feminist and conscious doctors and other professionals who I know have devoted their life to making change). It’s been hideous for me to listen, watch, as feminist women DEFEND horrifying interventions, unnecessary surgeries and procedures, dangerous drugs, and a really brutalizing, racist, sexist, institution that has a long, long history of hurting women, children, differently abled people, people of color, old people, poor people, ARGH. STOP DEFENDING THAT SHIT. THAT’S HOW WE GOT TO THIS POINT IN HISTORY where what is happening to Ashley can happen. She’s a HUMAN BEING. She has a right to her OWN BODY, her OWN LIFE, I don’t CARE if she is said to have the mental capacity of a three month old, HOW DO WE KNOW THAT? Don’t TELL me doctors know that with certainty, I DON’T BELIEVE THEM. They make LOTS of mistakes, LOTS, and they never admit to making them, either. God. For five years I was a court reporter and covered mostly medical malpractice cases. The stuff I heard, learned that happens to people in hospitals, at the hands of doctors, nurses, caregivers, not to mention what I experienced myself in my pregnancies and births (and again, not talking about my beloved midwives, my beloved woman-centered, woman-loving nurses and doctors and caregivers, but they are so outnumbered.) Anyway, it is a travesty. And for feminists to DEFEND and ADVOCATE for all of this bullshit, ARGH. I have written my fingers off in an attempt to get women to see that doctors are not our friend, as women. Patriarchal medicine? Not our friend. Hospitals? Not our friend. Drugs? No friend to us. (I know there are exceptions, please, an ongoing caveat that I always know there are exceptions.)

    AND, besides appropriating funds to END caregiver abuse, goddamn it, then I want funds to provide RESPITE care to all who care for loved ones who are differently abled. WE ARE A RICH NATION. WE CAN DO THIS. INSTEAD OF KILLING THOUSANDS AND THOUSANDS OF IRAQIS, for starters.

    When does it end? I just cannot do the subject justice. 😦

    Liz– what words do you use instead of disabled? I have heard different thoughts about this and usually use “differently abled,” but what are your thoughts, yours too, pony?


    Posted by womensspace | January 6, 2007, 6:22 am
  20. I have to disagree with you on this one heart. I hear what you are saying but this girls family are wanting to do the very best for their daughter. This is not about robbing a woman of her womanhood. From what I have read this child’s condition has meant that her brain function has never got past the “infant” stage of a baby. She needs her parents love and physical affection. The treatment will enable her to receive that same level of care that she needs throughout her life. To put a three month old child through the truama of puberty would be cruel.

    It really concerns me to hear you being so vitriolotic against a family who so obviously, as you agree, care about their daughter’s well being.

    I also take issue that our culture is intrinsicly “women-hating” and that all “doctors are not our friends” Surely this kind of outlook is as narrow minded as the institutions that I applaud you for rallying against.

    Men, in our culture are after all, raised by women?

    Posted by puddlejumper | January 6, 2007, 7:09 am
  21. I dislike tortured language. And I’m not “officially” disabled. I can wail on that for a long time; most of the “officially” disabled, who get some kind of help and services, are men, who got the way they are through risk behaviour. It’s very different for women, who are mostly disabled with multiple sclerosis, chronic fatigue syndrome, musculoskeletal disorders of one kind of another. Blindness is considered a disablity, but often deafness isn’t. And it varies from culture to culture. No one really knows I’m disabled. I isolate myself. And that’s very common too. I also really think I am not “disabled”, but have some difficulties. Insurance companies by and large set the bar on what is considered disability, and use a 1950s definition. Wheelchairs, Christopher Reeves. That’s disability. Not being able to do anything more than look after yourself, meals and toilette, that’s not disability by society standards. Lots of educating to do there, because medical science, in all it wonders, and I mean that sincerely, because there is much there to be thankful for, has given many of us lives, when a generation ago, we’d not have survived our illness or injuries. They figured out how to put metal legs and hips and hearts into us, but society doesn’t know what to do with us. Cyborgs.

    Posted by Pony | January 6, 2007, 7:12 am
  22. Hey, puddlejumper, I hear you, but I really don’t feel vitriolic in the direction of the family, as I’ve said several times. I realize that might be easy to miss given how intensely I feel about this situation. As I said in my last comment, I think the family is doing the best they can with the information and understanding that they have. My concern is not that they are robbing this girl of her “womanhood.” My concern is that they are subjecting her to serious surgeries and hormone treatments, the effects of which are unknown, and permanent. My concern is that they feared she might be sexually abused because she had breasts and a uterus, as though that has anything to do with abusers, sexually abusing.

    We don’t know that this girl has the development of a three month child. The fact that doctors say this, doesn’t mean it’s true. She doesn’t speak. She can’t move. There is no way for her to say what she knows, thinks or understands and there is no way for anybody to know that. The fact that a doctor says something, doesn’t make it so. Doctors are not God. Doctors are not priests, or perfect, or more moral or ethical or anything else than any other human being. Doctors make mistakes, sometimes very serious mistakes.

    In my last comment, I said at least three times, then asked that it be read as an ongoing caveat, that there are always exceptions. I will paste from my most recent comment:

    The stuff I heard, learned that happens to people in hospitals, at the hands of doctors, nurses, caregivers, not to mention what I experienced myself in my pregnancies and births (and again, not talking about my beloved midwives, my beloved woman-centered, woman-loving nurses and doctors and caregivers, but they are so outnumbered.) Anyway, it is a travesty. And for feminists to DEFEND and ADVOCATE for all of this bullshit, ARGH. I have written my fingers off in an attempt to get women to see that doctors are not our friend, as women. Patriarchal medicine? Not our friend. Hospitals? Not our friend. Drugs? No friend to us. (I know there are exceptions, please, an ongoing caveat that I always know there are exceptions.)

    I also said, in my most recent comment:

    really do feel for the parents and family for all the reasons you say, Miranda, and though I agree, they’re doing the best they can with the knowledge and information they have, and though I don’t really blame them,

    I also said, thinking of the family:

    then I want funds to provide RESPITE care to all who care for loved ones who are differently abled.

    Please, I ask you to read what I have actually written.

    It is very true that women have always raised men. Look around at the world. The fact that women have raised men hasn’t prevented them from creating this world we must live in.

    Posted by womensspace | January 6, 2007, 7:17 am
  23. Okay. Perhaps I misinterperated your post. It just came across, as a whole, to be incredibly angry. This child has gone through much of her life being medicinalised. I don’t see that we can blame patriarchy for this? She has a serious condition. Some doctors may be wrong but often they are right. And it seems to me the parents of this child, who ultimately know her best, agree that she needs this procedure.

    It’s invasive to have your appendix taken out or to need to have a C-section becuase you or your baby may die without one but no-one says this is the fault of patriarchy.

    I fear your outrage about this issue may get in the way of your credibilty for tackling real issues that affect women. War, abuse, the conventions of the family, all of the things you blog about so well.

    I just don’t think we can land the blame for every wrong in society at the door of our opposite gender.

    If the fact that women raise men hasn’t prevented them from creating the world the way it is then perhaps we need to look at the things we do first and foremost.

    Posted by puddlejumper | January 6, 2007, 7:26 am
  24. This child has gone through much of her life being medicinalised. I don’t see that we can blame patriarchy for this?

    We can’t blame patriarchy for the fact of her disease or condition, but we can blame patriarchy for the creation of systems which allow for the uterus and breasts of a small child to be surgically removed, with permanent results. We can blame patriarchy for the creation of a system which allows for the bombarding of a vulnerable child’s body with hormones. We can blame patriarchy for the creation of a system which endorses these “treatments” and makes them available, even though the patient herself might not want them, if she could be given a voice.

    She has a serious condition. Some doctors may be wrong but often they are right. And it seems to me the parents of this child, who ultimately know her best, agree that she needs this procedure.

    Again, as I’ve already said, I think her parents are acting on the basis of the information and knowledge and insight that they have, doing their best. That can be true, while, at the same time, what they are doing for their child is not best. Parents do all kinds of things that hurt children believing what they do is for the best. The fact that parents know their child, doesn’t mean they will act in her best interests, *even when they want to and intend to*. As feminists, we have to analyze and critique what parents do believing it is “best” for their daughters, their children. As feminists we have to analyze and critique what doctors do, believing it is “best” for human beings.

    It’s invasive to have your appendix taken out or to need to have a C-section becuase you or your baby may die without one but no-one says this is the fault of patriarchy.

    C-sections are routinely, routinely given to women who do not need them and who would not die without them, and neither would their babies. There are many, many credible articles which are easy to find on the internet which describe the way doctors in the U.S. especially perform unnecessary c-sections because it is more efficient and expedient for them. Unnecessary c-sections are major surgery with permanent, lifelong consequences for women and sometimes for their babies. That *is*, in fact, the fault of patriarchy. Lots of appendectomies are unnecessary, too. Doctors don’t know whether an appendectomy is necessary until a patient is already under the knife.

    I fear your outrage about this issue may get in the way of your credibilty for tackling real issues that affect women. War, abuse, the conventions of the family, all of the things you blog about so well.

    With all respect, puddlejumper, the abuse of women by the patriarchal medical establishment is a *real issue*. Tomorrow I will post some excerpts from a book Barbara Ehrenreich wrote about this years ago. Other amazing feminist women have written about this as well.

    I just don’t think we can land the blame for every wrong in society at the door of our opposite gender.

    I blame the patriarchy, a system which was created by men. That doesn’t mean there aren’t good men, who are allies to women.

    If the fact that women raise men hasn’t prevented them from creating the world the way it is then perhaps we need to look at the things we do first and foremost.

    puddlejumper, I’m not hearing you blaming mothers for the existence of patriarchy or misogyny, am I? Please, tell me it ain’t so! If mothers had had the power in the world, throughout the ages, the world would look much different now. But mothers never had the power. We were chattel, property, like cows and horses, owned by men, without legal or human rights. Mothers did our best, and still do, in a context of relentless misogyny and oppression.


    Posted by womensspace | January 6, 2007, 7:39 am
  25. I’m still not with you on this heart. I have the upmost respect for what you do but I still think your making a feminist issue out of something that isn’t.

    Unnecessary C-sections…absolutely. But I’m sure you wouldn’t disagree that there are times they are necessary.

    Women undergoing plastic surgery to keep men (and to compete with other women)…I hear you sister.

    But really. A medical procedure which will improve a child’s quality of life. Personally I don’t care whether the child is male or female. Do we say it’s patriarchy at fault if we remove a woman’s womb or breasts to prevent cancer?

    You say-
    “Based on what I’ve read on feminist and progressive blogs so far, most feminists don’t have any feminist or woman-centered basis for objecting to this procedure, not really. Some arguments about slippery slopes. Some arguments against objectification of the disabled. Not much more, that I saw.”

    Perhaps Heart that’s because most feminists/most women don’t see it as *real* issue.

    The fact that that most women in our world still can’t access proper healthcare or midwifery through poverty is arguably a *real* feminist issue.

    The fact that this child would have almost certainly died if she hadn’t been born in a developed nation is a *real* issue.

    I’m sure you would agree that as a woman I’m as entitled to my opinion on this matter as much as you are.

    Even if that means we must agree to disagree.

    And for the record I think now that we, as women, actually have more power in the world than you sometimes give us credit for. I think we do have a responsiblity to raise our sons better than our mother’s did. And that means not always acting the victim.

    Posted by puddlejumper | January 6, 2007, 7:58 am
  26. Whoa, puddlejumper! Who is “always acting the victim”? We mothers do the best we can– always. And we do well. But no matter how well we do, patriarchy is bigger than us. Always has been, always will be. Having said that, women are indeed victimized by patriarchy. Mothers are victimized by patriarchy. So are children. So are men and boys, for that matter. There is no shame in that and no reason not to be very up front about it– that is simply what’s true.

    We have no idea whether what is being done to Ashley will improve her quality of life. We have no idea at all. It could leave her, instead, with lifelong health and emotional problems.

    Patriarchal medicine has a long history of hurting women– removing our uteruses because we were “hysterical.” Performing clitoridectomies because we were “nymphomaniacs.” Drugging us because we were “depressed,” without considering WHY we are depressed. Basically torturing birthing women– tethering us to beds (as was done to me in my first birth), administering enemas while we are laboring. Doing examinations at the heght of contractions. Forcing us to push when it isn’t time. Cutting us and stitching us up unnecessarily. Giving labor-inducing drugs unnecessarily. Banning midwifery until very, very recently, and even now, midwifery is threatened in many states.

    Patriarchal medicine has also committed atrocities on persons of color in the U.S. There are hideous examples of this. For forty years between 1932 and 1972, the U.S. Public Health Service conducted an experiment on poor black men, sharecroppers in Alabama, in the late stages of syphilis. They were never told what disease they were suffering from or of its seriousness. The doctors used them as guinea pigs, trying various things without telling them they were seriously ill. 28 of them died. Patriarchal medicine has sterilized countless women of color and differently abled women without their knowledge or against their will and without their consent. There are just too many stories like this to even tell here. I’ll post some quotes tomorrow.

    Of course, always, we are all free to disagree with one another. I am just providing you with the reasons for my own beliefs and opinions. I firmly believe that long ago, the feminist movement ought to have challenged the practices of patriarchal medicine. For a brief time, back in the 70s, early 80s, it did. Then came the backlash and so much was lost.


    Posted by womensspace | January 6, 2007, 8:17 am
  27. Please, read Wheelchair Dancer

    Read Did I Miss Something

    Differently abled feminists, writing about the Ashley Treatment.


    Posted by womensspace | January 6, 2007, 8:26 am
  28. See I think feminism has been succeeding in changing the “patriarchal” medical practices.

    As I said I have no argument with the abolution of the needless procedures you mention above.

    Patriarchal society has indeed made life difficult for many many women. No argument.

    But your main argument for this little girl not to have the procedure done is

    “We have no idea whether what is being done to Ashley will improve her quality of life. We have no idea at all. It could leave her, instead, with lifelong health and emotional problems.”

    So could not giving her this procedure.

    You seem unconvinced that everything her parents and her doctors say about her being three months old, is true.

    Because doctor’s aren’t God or priests.

    But lets assume for a moment that they do have that part right.

    Would you put a three month old baby through puberty or remove her (by virtue of her increasing size) from the security of her mother and father’s arms?

    That to me is just barbaric.

    And I’m sorry, but in my opinion the backlash that you speak of happened precisely because some women found it impossible not to see EVERYTHING in anti-patriarchal terms.

    I think we lost our way.

    In order to be taken seriously by other women (never mind men) you have to able to put forward a logical argument for what you are saying.

    Up until now you always have but I just don’t see it in this case.

    Posted by puddlejumper | January 6, 2007, 8:32 am
  29. puddlejumper, just read the links I posted in my last post. Just read them. Talk about logical arguments from credible people (not that mine have not been logical– they certainly have been.) Honestly, where are your logical arguments? I’m not seeing them? Not trying to be mean or insulting, but I don’t see that you have made any real argument other than, parents know best and we shouldn’t blame everything on patiarchy. Those aren’t arguments– those are opinions.

    In any event, I’m not going to worry about whether or not I am “taken seriously” by whomever. I am taken seriously. I know that. That being so, I am going to spend my time speaking what I know to be true, speaking of women’s reality. Those who have ears to hear will hear. That is my experience.


    Posted by womensspace | January 6, 2007, 8:38 am
  30. Thanks for the links.

    See these are both very convincing arguments.

    But neither seem to be suggesting that patriarchy is at fault.

    Society in general perhaps.

    But not “patriarchal medicine.”

    Posted by puddlejumper | January 6, 2007, 8:42 am
  31. Just going to post this, then bed. This goes to what you said, puddlejumper, about putting Ashley through puberty. She is not a three-month old child. She is nine, and has a normal life expectancy.

    From Wheelchair Dancer, link in my post above:

    To “excise” Ashley’s “buds,” because, well, she won’t be breast-feeding and has no use for them and because they might get big — soooo excessively big that they are uncomfortable; yes, it is possible, but not at this stage, known for certain — is to deny her the pleasure in her body.

    Sexual pleasure is natural. Kids don’t have and don’t need the full intellectual apparatus of sexuality to know that if you touch here, the feeling is good. Why shouldn’t Ashley have that feeling? I am not suggesting that anyone touch her in that way — explicitly sexual touch without full and free consent is not acceptable. But if Ashley can feel pleasure in the way her clothes fit her or in the movement of her clothes or her body, why shouldn’t she? To take both her, at this point in her life, healthy breasts and uterus to avoid the possible pain of cramping and other menstruation related difficulties or disabled life-related difficulties is incomprehensible to me. Will menstruation be any more or less incomprehensible to Ashley than any other kind of excretion?

    If that’s not feminism, then nothing is. That is pure feminism.


    Posted by womensspace | January 6, 2007, 8:43 am
  32. puddlejumper, it is patriarchal medicine that is responsible for doing what the authors in those links are talking about. They don’t have to say “patriarchal medicine,” for that to be so.

    I call it “patriarchal medicine,” because that’s what it is. The field/institution/discipline of medicine has been white-male-dominated always. Women were not allowed to go to medical school or to be doctors until the 1900s, you know? There are anti-patriarchal men and women in the institution and discipline of medicine today, but they are vastly outnumbered and have been around for only 30 years or so.


    Posted by womensspace | January 6, 2007, 8:44 am
  33. You have yet to make a convincing argument for patriarchal medicine to be at fault. You merely have an opinion that it is so.

    My argument that perhaps most feminists don’t agree with you was based on your own statement that no feminists had blogged about it.

    “some arguments about objectification of the disabled. Not much more that I saw,” you said.

    You then provide links for two blogs which appear to me to be exactly that. And I can appreciate and give credit to their arguments.

    I haven’t for a moment suggested that you stop “speaking what you know to be true” if you read my posts you will see I have the utmost respect for much of what you do over here.

    I’ve merely disagreed with you.

    Those who have ears will hear but that doesn’t mean they think you are always right.

    Posted by puddlejumper | January 6, 2007, 8:52 am
  34. And I do hope you take all this in the spirit of debate heart.

    (even if it gets confusing with double posts)

    We can disagree on things. That’s surely our right as women?

    Posted by puddlejumper | January 6, 2007, 8:56 am
  35. Heart, this is a very interesting post, and I’m glad to read a feminist argument against this procedure, although I personally do feel that Ashley’s parents are doing the right thing. However, most of the arguments I have heard to the contrary have come from a conservative viewpoint of people who are not principally concerned about Ashley herself.

    I agree very much that the justification that keeping her child-like will reduce the risk of sexual abuse is crap. If she falls into the wrong hands, then sexual abuse can occur whatever she looks like. However, from what I read the parents’ website, that is not their main reason for doing so– overall, their reasons for doing so seem to be Ashley’s comfort at home.

    You, and others, have mentioned that we can’t know FOR SURE that her cognitive abilities are that of a three month old; it is simply that the current experts have, to the best of their knowledge, reached that conclusion. It is possible (but, to all appearances unlikely) that she will remain as she is for the rest of her life, in cognitive terms. As such, it becomes a gamble– if the doctors are right, as is probably the case, then the parents are improving her quality of life. In the unlikely event that they are wrong, then the parents may well have hurt her greatly by denying her an adult body and sexuality. The question of whether the pain she MIGHT experience IF the doctors are wrong is so great that it outweighs the benefits towards her if the doctors are right is a philosophical one, with no answer that can ever be set in stone. It’s my opinion that, after weighing up all the factors, Ashley’s parents have made the best choice– not that they believe they have made the best choice, but that they actually have done what is best for their daughter.

    A couple of points that have come up here that I wanted to address too– Ashley’s hysterectomy removed her uterus, but not her ovaries, which means that she won’t go through a hormonal menopause. Also, while her breast buds were removed, her nipples were not, something that might not have been possible had she needed a mastectomy later in life. It was also far less painful than a later mastectomy would have been. I am not sure what the implications are for sensation in her nipples, but from what I can tell, the procedure would in no way reduce her ability to engage in child-like masturbation, as Wheelchair Dancer suggests. She still has her clitoris, and all of her external genitals, and these will continue to be as sensitive as they are to any child.

    I do think you also bring up some interesting points about the gendering of the procedure, as per, would this be even considered on a young boy with a similar mental age? That’s really quite hard to know, since this is a world first. Ashley’s parents certainly seem to think that it would be appropriate for boys as well, although as we all know, the theory often does not match the practice. It will be interesting to see what happens in the future.

    One thing I was wondering in relation to the gendering– do you think perhaps that this particular case is only getting a huge amount of media attention because Ashley does have an external appearance of a fully abled– and also conventionally pretty– nine year old girl who happens to be lying in bed? That is, the implication is that she will grow into conventionally “beautiful” woman by patriarchal standards? While I know that you, Heart, would be equally concerned about this issue regardless of her appearance, the media (as you know) does not share your values. I’m just wondering if this would even be a story in the western media in general if Ashley’s pictures didn’t code her as someone who is likely to grow into patriarchally approved woman?

    Posted by Beppie | January 6, 2007, 12:57 pm
  36. “It is possible (but, to all appearances unlikely) that she will remain as she is for the rest of her life, in cognitive terms.”

    Just to amend a mistake here– I meant “It is possible (but, to all appearances unlikely) that she will NOT remain as she is for the rest of her life”– that is there is a small possibility that she will become more mentally able at some stage, or that she is more mentally able than she is perceived to be.

    Posted by Beppie | January 6, 2007, 1:00 pm
  37. I just want to comment here on the ” but men are raised by women” thing.

    Women do bear most of the practical burden of childcare, the hard graft, the day to day work of the business, but they are not the only or even the main influence on the child in terms of it’s attitudes.

    Do we live in a world where a boy grows up in a 100% female environment ONLY under the influence of women and with respect for women and women’s work and women’s bodies and women’s full humanity ?

    Or do we live in a world where a boy will be BOMBARDED from day one with messages – male generated, patriachally generated messages – about the inferiority of women, the role of women as the world’s servant, his servant, his property. Where men will taunt and taunt the boy unless he meets their definition of a real man ?

    Think it through puddlejumper.

    Oh, and this: In order to be taken seriously by other women (never mind men) you have to able to put forward a logical argument for what you are saying.

    No, in order for any woman to be taken seriously they have to be acknowleged as a human being who is worth taking seriously. We can have logic coming out of our ears and it will count for nothing for no other reason than when a woman speaks it counts for nothing. It’s not a lack of logic, it’s a lack of recognition.

    Posted by therealUK | January 6, 2007, 1:09 pm
  38. The Real UK, no kidding, re women being taken seriously! Now that you mention it, the only time women can depend on being taken seriously is when their views or perspectives are no threat to the status quo, when we are behaving ourselves and towing some conventional party line.

    puddlejumper, responsive to something you said that I didn’t address, I didn’t say that no feminists had blogged about this. I said that from what I had seen, feminists didn’t have many real or convincing arguments against this procedure, in that so many stopped critiquing patriarchal medicine long ago. If you’re (generic “you”) going to defend cosmetic surgeries and unnecessary c-sections and sexual reassignment surgeries and gastric stapling, what would be your basis for criticizing this kind of surgery? Even though many feminists are fairly appalled by it. Their arguments end up being something along the lines of that this is a slippery slope (when actually, this is way down at the end of the slippery slope that began decades ago with defenses of invasive and unnecessary medical procedures) or that Ashley is being objectified by her family (which she is, and that’s also an area long neglected in feminist critique, the way children are objectified by parents). These arguments are valid but they sure aren’t strong enough to constitute any real challenge to the legitimacy or validity of harmful and dangerous medical procedures performed on girls and women who are not ill.

    beppie, I think the media and the general public are always morbidly fascinated and obsessive over these macabre situations in which decisions are being made over the lives and bodies of girls and women without their knowledge or consent, while they are in positions of helplessness and vulnerability, i.e., Terry Schiavo, and yes, particularly if they are white and conventionally attractive, for many reasons, one of which is the love/hate relationship the general public has with conventionally attractive white girls and women. Situations like this have a certain titillation factor that way, I think, that is informed by free-floating resentment. There are the other factors the media/public love so much, too: this is a devout Christian family, middle class, apparently the American ideal.

    Besides the fact that doctors can’t really know what Ashley might be thinking about or whether she is at a 3-month stage of development, the future is also unpredictable. We don’t know what might be possible for Ashley in the future, not only in terms of coming to a better understanding of her cognitive abilties and what she really might think or know or feel, but also so far as breast cancer. A cure might be discovered for breast cancer, you know? The thought of removing a child’s breasts because she might have breast cancer some day far in the future is, again, macabre to me. What, are we going to just start removing the breasts of all sorts of young girls for this reason now, just like in years past doctors randomly removed women’s uteruses because they didn’t need them anymore, might as well? :::rage::: If Ashley’s breasts have been removed, it is unlikely she has nipple sensation, given my understanding of this kind of procedure. As a feminist, I think girls and women have every right to, as the writer of that paragraph I posted up there said, revel in and enjoy their bodies’ capacities for pleasure, and for that matter, for feelings of all kinds.

    The other thing is, the decisions made for this young girl seem made from the perspective that she won’t grow up the way “normal” girls do and that being so, just do whatever, surgically, medically, hormonally. You know? There is no thought or respect for the young woman Ashley might have grown to be without these surgeries. Why is “normal” so great that not being normal equals eligible for invasive surgeries and huge doses of hormones? Well, that really is our theory in the West, that if people aren’t “normal,” then they should be fixed via surgery, medicine, hormones, therapies that make them what society has decided is “normal” — “normal” weight (which is anything but “normal” for women!), i.e., gastric stapling and similar obesity surgeries, “normally” gendered (SRS), “normal” in appearance (cosmetic surgeries), and so on. This is all core to the way bodies are regulated in a sexist society. Women aren’t supposed to be fat. The gender nonconforming are supposed to conform. Women are supposed to be beautiful. If there are multiplicities of surgeries and procedures to accomplish all of the above, might as well expand the available options to deal with those whose lives and bodies will never be this much adulated “normal,” that isn’t even normal! It is what is held out to be normal, especially for women.

    I don’t think there is any way anyone can know what would be best for someone in Ashley’s situation. We just don’t know. We can’t know. I understand all of the parents’ reasons and thoughts about this and am definitely sympathetic to their plight– I’m not really criticizing them so much as our society in which these “options” are available in the first place. If we can’t know what would be best for someone in Ashley’s situation, then I think the thing to do is respect her as fully human. This is also the position I take with respect to animals and their welfare. I think it’s wrong to “put a dog or cat to sleep,” for example, or to subject it to surgeries or invasive procedures, without first attempting to determine whether this is something the animal would want or consent to. There are people these days whose life work it is to learn how to communicate with animals in the interests of animal rights. There is a burgeoning field of animal rights law. If animals are deserving of this basic level of respect, as I believe that they are, surely human girls and women are.


    Posted by womensspace | January 6, 2007, 3:43 pm
  39. Also, any of us who has mothered a three-month old baby knows that three-month olds are amazing little human beings. They smile, respond, make attempts to communicate, experience and communicate emotions of many kinds, enjoy their little pleasures. That’s another thing that really bothers me about all of this. A three-month old baby is a human being completely engaged with life and the world in her own unique way. Three-month old babies aren’t emotionless, nonresponsive, non-thinking, non-processing blobs, which is the sense you get when Ashley is described as being at a “three month old stage of development.”


    Posted by womensspace | January 6, 2007, 3:54 pm
  40. Heart,

    Thanks for this wonderful discussion.

    Medical interventions are the kind of power that patriarchy enjoys.

    Social service supports are the kind of power that patriarchy does *not* enjoy.

    Posted by Mary Sunshine | January 6, 2007, 5:40 pm
  41. Oh, patriarchy uses social service supports well to its advantage, also.

    And I agree about Ashley – sometimes handicapped children grow and achieve more than anyone ever thought they would, but if that was to be so in Ashley’s case, they sure as hell now made sure that it won’t be.

    Posted by Branjor | January 6, 2007, 6:28 pm
  42. With the greatest respect, a couple of issues to points raised against my argument.

    therealUK Says:
    “Do we live in a world where a boy grows up in a 100% female environment ONLY under the influence of women and with respect for women and women’s work and women’s bodies and women’s full humanity ?”

    No. I never suggested for one minute that women take 100% of the “blame” for society’s ills. We live in a world where men and women live together in a roughly 50/50 split. And I whole heartedly agree that this should be reflected within our power structures and that at the moment it still is not. However until women respect their own worth we cannot expect our sons to do the same. This is the “victimhood” I made a point about to heart.

    I also think we have a duty to focus more on making sure all women in the world have the benefit of our current level of emancipation before getting bogged down in what in my opinion (an opinion you would surely grant me as entitled to as you are to yours) as a manufactured “feminist point” of view which has more to do with the rights of disabled persons.

    You also say
    “Or do we live in a world where a boy will be BOMBARDED from day one with messages – male generated, patriachally generated messages – about the inferiority of women, the role of women as the world’s servant, his servant, his property. Where men will taunt and taunt the boy unless he meets their definition of a real man ?”

    Men have as much responsibilty as we do for changing this and until we accept our 50% of that then I don’t see us making so much progress. Seeing men as the enemy (barring a few selective members who agree with you) polarises the sexes and just ends up with everyone resorting to defending their position even more strongly.

    You also say

    “We can have logic coming out of our ears and it will count for nothing for no other reason than when a woman speaks it counts for nothing. It’s not a lack of logic, it’s a lack of recognition.”

    That to me makes you sound like a like a victim. Quite probably I will be accused by you or heart as being a either brainwashed by patriarchy which would imply that I have no mind of my own or that I don’t make sense. Which has already been tried but in my opinion not really substantiated.


    womensspace Says:

    “What, are we going to just start removing the breasts of all sorts of young girls for this reason now, just like in years past doctors randomly removed women’s uteruses because they didn’t need them anymore, might as well? :::rage::: If Ashley’s breasts have been removed, it is unlikely she has nipple sensation, given my understanding of this kind of procedure. As a feminist, I think girls and women have every right to, as the writer of that paragraph I posted up there said, revel in and enjoy their bodies’ capacities for pleasure, and for that matter, for feelings of all kinds.”

    You are sexualising this childs medical procedure as much as the media heart. Can’t you see that? You keep going on about her breasts and her womb. You’ve mentioned her small size in passing but not really got so upset about it. Are you arguing that if she loses these parts of her body she is somehow demeaned as a woman?

    You keep repeating that she is too young to make up her own mind. My son was too young to make up his own mind when he broke his arm a few years back. Did I leave it untreated? Of course not.

    I trusted that he broke his arm because the “doctor told me” yet you somehow suggest that to trust any part of the medical establishment unless they have been pre-approved by you as “feminist” enough, is misguided.

    You go on to say…

    “Three-month old babies aren’t emotionless, nonresponsive, non-thinking, non-processing blobs, which is the sense you get when Ashley is described as being at a “three month old stage of development.”

    I never got that sense of Ashley when I heard her described as three-months old developmentally. I got a sense of her as having the full range of emotions of a three-month old child. The need to be loved and held and have her parents around.

    I agree with everyone that says if more were spent on proper care facilities perhaps the parents would not need to go through with the procedure.

    But the reality is there are no facilities were she could gain that standard of care of she is NOT given the treatment.

    Neither Ashley nor her parents can wait around for the revolution to happen.

    If you have such facilities or are prepared to take on the financial and emotional cost of this yourself then by all means do so. I’m sure Ashleys parents would welcome the help.

    But please don’t use this child’s plight and that of her family be used as a pawn in the “look how bad patriarchal medicine treats women” debate.

    There are so many better example you could use than this, heart.

    Posted by puddlejumper | January 6, 2007, 7:39 pm
  43. Thanks for writing about this, Heart. I’ve been having the same kind of “No, Bad!” reaction to this that Incurablehippie described, without thoroughly formed thoughts (big shocker, as I rarely have any), and your post and this discussion is helping a lot.

    When I first read about this yesterday, I was telling my mom about it, and my dad interjects to ask, “Where did this happen?” I said, “Here, in America.” He then asked me what the people ARE, and I said, “Um, they’re American.” Him: “OK, but what ARE they?” Me: “I’m not sure, but I think they’re white; what’s your point?” (Knowing full well what he was trying to get at.) Him: “And they were able to find a doctor who would do this?” Me: “Um, yeah, because doctors pretty often have no problem with mutilating women and girls.” Him: “Oh, christ, will you get off it!” Exit dad, rolling his eyes. And I wonder why I mostly don’t feel safe saying anything remotely feminist anywhere.

    Posted by Melissa | January 6, 2007, 9:00 pm
  44. My thought, as a woman who somehow managed to negotiate the ‘hideous trauma’ of physical puberty, is that this is bullshit. As a woman who’s raised two children past the ‘three month’ stage, my thought is also ‘this is bullshit.’

    The pain of the invasive surgery and all the aftermath of recovery that doctors/ family decided she apparently wouldn’t be bothered by now – is this seriously of less concern than the __speculative__ pain she may feel during the natural development of her body? Did they simply not take into account that for many girls, it *isn’t* a hellish experience of pain and mental struggle? With the *cognitive ability* of a three month old, who is it that came up with the idea that her experience of puberty would be so unbearable for her? I’d like to venture an opinion that it wasn’t a woman. Are three-month olds unable to deal with their body’s rapid, rapid changes as they grow? Do they scream and cry for *anything* other than food and loves and boredom? Who’s to say she’d have been bothered by her own body’s gradual and natural progression at all? Yet here is she, forced to deal with all kinds of pain and trauma from a major, invasive surgery on the basis of SPECULATION. Period.

    And speaking of a baby crying for loves, I seriously can’t imagine that the fact that her mom or dad or caregiver can only craddle the top half of her fully developed body instead of a full 2/3rds of her body would seriously cause her some mental trauma in the future. (!!!!!) Jesus Christ on a stick. Your body is your body. At whatever your age. Thee month olds are very curious about their body – the way it moves, the way their line of sight is affected by flopping their head around, and so on. I dare to speculate that Ashley would have been fully comfortable in her own, natural body had she been given the basic right as I was, as you were; but now it’s nothing but speculation on *our* part.

    Like I said, bullshit.

    Posted by Pramiti | January 6, 2007, 11:17 pm
  45. Rock on, Pramiti, Mary Sunshine, Branjor, and Melissa. Everything you said there, Pramiti, so right on! Another thing I’ve been reading is that since the surgery didn’t remove Ashley’s ovaries, no biggie. It IS a biggie. When uteruses are removed, often times there is pelvic floor damage and ultimately incontinence (loss of bladder control). This would be especially true for someone who couldn’t exercise, couldn’t do muscle strengthening exercises like kegels, and so on. Hysterectomies also cause other problems for many women who have them. You don’t just cut people up, goddamn it, and say it’s nothing! ARGH.

    Well, I lifted the comment below from a blog I’m not naming because the owner is a pornhound and a complete and certifiable asshole. But this is well worth the read; many props to Ballastexistenz for speaking her truth to ignorance and ableism and some other things.


    Ballastexistenz Writes:
    January 6th, 2007 at 4:03 pm

    So we have a bunch of people here who probably mostly call themselves feminists, and probably mostly consider themselves progressive, considering a certain kind of life so subhuman and alien to them that they’d rather die than be like that (even though they’ve never been like that long enough to know that), failing to question the medicalization of this woman’s life (including “mind of a whatever-month-old” — which is a medicalized, not an objective, way of looking at a person), failing to do just about anything but reiterate old half-formed prejudices about disabled people like men ranting about dimwitted blondes. Makes me remember why I don’t spend much time in that community.

    Try spending some time seen as so not-there that you’re said to be too severely developmentally disabled to develop a cohesive personality structure, all your actions are seen as malfunctioning brain bits rather than reality, learning things at 5 and 10 and 20 and so on that most people are born knowing (and possibly never learning some of those things at all) and having “mental age” judged on that, learn to dissect that crap for what it is before you spew it back onto blogs like this one…

    January 6th, 2007 at 4:11 pm
    Oh, and anything calling itself disability rights that’s got an IQ cutoff or a severity limit, isn’t disability rights, it’s something else.



    Posted by womensspace | January 6, 2007, 11:33 pm
  46. You wimmin, do yourself a favor and go read Ballastexistenz’s blog, omg. Read her post about institutionalization, read about her life. She is an amazing communicator and a brilliant writer. I’m adding her to the blogroll.



    Posted by womensspace | January 6, 2007, 11:49 pm
  47. And I’d have to disagree with puddlejumper’s assertion that Heart’s points lacked logic, or didn’t hold water with other feminists. I’m a radical feminist who sees logic in her points.

    In addition, I could add my own ‘illogical’, if you will, reasons why the current medical establishment is still what I would call a ‘patrichal institution’. I don’t feel I actually *need* to extend my argument past a simple listing of women’s ‘choice’ of birth control, even in this day and age. However, since you’re such a hard nut to crack, all respect due, I’ll include my recent decision to pull myself out of the painful rounds of birth control and all their side-effects by getting my tubes tied. I made an appointment with a specialist, fully prepared to pay out the nose for the procedure, only to be turned away on the first visit with a pat on the ass and a directive to ‘speak to [my] husband about this.’

    Well. I assure you the :::rage::: was beyond anything my partner had ever witnessed from me. The fact that the fucking ass-hole had the gall to bill me — to BILL ME — $50+ for his condescension still blows my mind in directions I still can’t find. THAT’S a bill that went to collections out of sheer revolt. Credit score? Fuck that. I’m not supporting that doctor.

    After much research, I was able to find a woman who would do the surgery. Even she legally had to exhort me, tell me ‘scary stories’, try to dissuade me – and all because I was a ‘mere’ 25 years old, and therefore fully viable as a baby-machine. Despite the fact that I had already had two children, and was fully satisfied. MY satisfaction apparently had nothing to do with it, when it comes to my viability as an incubator.

    It wasn’t simply because I was done birthing. The main reason was because I had to get myself out of the painful depression, bodily disfunction and non-existent sex-drive that every single type of birth control I’d used had spun me into. And I’d used several. Talk about a ‘patriarchal institution’, when so little time and research has been put into something that affects almost every woman’s quality of life? And you still attempt to assert that it’s not patriarchal?

    Posted by Pramiti | January 6, 2007, 11:50 pm
  48. I’d like to apologize in advance to puddlejumper for what was definitely a condescending attitude in my last post. I really dislike in-fighting, consider it self-defeating, so I’m really disappointed in myself for, in effect, picking a fight. Please disregard my condescending tone, and look instead at my point. Thanks.

    Posted by Pramiti | January 7, 2007, 1:27 am
  49. puddlejumper, I’ve approved your posts, but I almost didn’t because (1) I and others have responded to the points you made already, sometimes more than once; (2) you have consistently either misunderstood or mischaracterized what has already been posted and have, in an ongoing way, responded to what has never been said. Also, some of what you posted seems both ableist and anti-feminist to me and hence feels to me like trolling. I don’t have time, and won’t take time, to argue with that kind of comment here.

    Please keep this in mind in future comments that you make. I will not have the word “victim” used dismissively and as an insult on my blog. Under male heterosupremacy, women and children *are* victimized, every single day, and I will not participate in any sort of anti-feminist obfuscation along the lines of, “Oh, you’re acting like a victim.” No. As women, we ARE victims. Full stop.

    You are free to comment here, but please read all the comments carefully. If you continue to distort and mischaracterize what women here have taken substantial time to post, I will not approve your comments.



    Posted by womensspace | January 7, 2007, 3:05 am
  50. Pramiti: That comment about your tubal ligation was amazing. Thank you for posting it.


    Posted by womensspace | January 7, 2007, 3:05 am
  51. I’ve had time to think about this.

    And I’ve come to the conclusion that it is never right to operate on a woman, on a person, unecessarily. Ashley has/had nothing wrong with her reproductive system or her breasts. What person has the right to take away her femaleness/womanliness from her?

    Her right as a person, as a woman to have all her bodily functions. I don’t think having the mind of a three year old is a justification for operating on her in such a way. Okay, so the parents are concerned that a carer or other such person may sexually abuse or rape her – but they can, as has been mentioned, do this with or without her reproductive organs or breasts there. Shouldn’t the spotlight be on the sick people that rape and abuse people who are unable to fight back as opposed to ‘prevention’?

    It seems too much like the arguement that in order to prevent rape, women must keep off the streets/walk home in bright lights/avoid getting drunk/not wear short skirts etc. As someone has recently said – it would be more effective to keep men and rapists off the street so that women won’t have to worry. The same arguement can be applied to the people that will be looking after Ashley – they have the responsibility and must not abuse her. It is never a girls or woman’s fault that someone may abuse or rape her.

    Her parents have fetishized her calling her ‘pillow angel’, to the status of a pet like child they will look after. This is worrying as it is natural for a parent to perhaps feel resentment at some point as it is difficult to constantly look after somebody. But when in the media spotlight, you are likely going to be vilified if you even so much as mention a more complex degree of feeling about the situation – the current one seems unhealthy and very one-dimensional.

    Heart – I don’t really label myself or other ‘disabled’ people as disabled, mostly because I feel that our society uses that word to exclude people or to lump us all together. There are so many different people all with different degrees of experience. I would be more likely to use ‘disabled’ in context of the social model of disability in which society disables us as the world is set up for ‘non-disabled’ people. I wish the world was inclusive and not so ignorant.

    I can’t speak for people whose first language is sign-language, because I lipread (although have learnt stage 1 BSL, I think sign language is great!) but I feel that all deaf people are stereotyped to the extent that they are seen as ‘deaf and dumb’ which is derogatory and implies stupidity. No deaf person is stupid and it is other people that often don’t want to break through the language barrier or make the effort.

    Posted by Liz | January 7, 2007, 3:19 am
  52. Post deleted at author’s request.

    Posted by Pony | January 7, 2007, 3:35 am
  53. I retracted my apology (above) on puddlejumper’s own blog.

    Picked the wrong puddle to jump into, this time.

    Posted by Pramiti | January 7, 2007, 3:43 am
  54. I wonder if part of the motivation (not necessarily consciously) for seeking this treatment has to do with making it easier on a psychological level for her parents to continue caring for her. Meaning, if she stays a child physically, will that make it easier for her parents to deal with the fact that she remains a child mentally?

    Regarding what basis we have to object to a procedure like this, what I immediately think is that a child’s body does not belong to her parents. I argued this with more people than I care to recall when I was pregnant and the issue was circumcision. It is my opinion that parents should not remove a healthy part of their child’s body for any reason, but it happens every day. Ashley’s case is indeed an extreme example of this, but I think that the fact that it can even happen illustrates the fact that we (as a society) still see children as “property”.

    The fact is, children don’t exist to be convienient for their parents.

    Posted by beansa | January 7, 2007, 5:27 am
  55. Gotta post it here. She’s just so damn good.


    Ballastexistenz Writes:

    January 6th, 2007 at 10:18 pm

    I’m not sure if that’s the “rights” that were being discussed because it seems that the “rights” in this thread are more fundamental.

    Indeed. We’re talking about something very different than what was described, and the comparison between being able to go outside on your own and avoiding a fundamental violation of your body for others’ convenience is stretching things a good deal. Certain fundamental rights are just there, and the privilege of being able to run around discussing people’s “best interests” (nearly always an ableist term when applied to others) lies with those who think they are superior.

    And I would actually say that anyone calling their child a “pillow angel” only thinks they love their child. Something that calls itself love while actually denying the existence of the person is hate, even if the people feel warm fuzzy emotions while doing it. Love and hate aren’t emotions.

    Although I also have to comment on the example given:

    But if a 20 year old with intellectual disabilities isn’t able to cross a street safely, to find his way back home, or to recognize and avoid physical hazards, then it should be legal for his parents or guardians to prevent him from leaving home unaccompanied — even if sometimes he clearly wants to go off on his own.

    I’m a cognitively-disabled 26-year-old, and my daily adaptive functioning (as opposed to intellectual functioning) is regarded as a tier up from as low as possible. In the medicalistic world where crap like that is enumerated, anyway.

    I cannot cross streets safely, sometimes because cars that are moving seem to disappear, sometimes because I don’t actually remember at that point what a car is or the significance of death or anything, sometimes because all I can think about is that neat set of lines in the middle of the road that I can stare at and follow up close.

    I am frequently unable to get back home (rarely unable to find home — my sense of direction is intact through almost everything, even when I understand little else including what “home” is — which is more likely to be the issue) for similar reasons.

    I have great difficulty avoiding physical hazards because of the same reason that I have trouble with cars. If I’m having to concentrate on getting around, everything’s a big mass of shapes and sounds and colors and textures, and I interact with them on that level rather than on the level of standard conceptualization (even basic abstraction such as simple categories often being missing) and danger and so forth. (A world that all of you on this thread who totally fear loss of your precious abstractions — as loss of “self” even — ought to visit from time to time before you condemn it as an empty soulless existence.)

    Add to that the fact that at the age of 23 some people tried to pull the “get in a car with me we have a toy for you” routine to kidnap and (from what they were saying) rape me and the only reason I didn’t go with them was total coincidence totally unrelated to my conception of them as dangerous, because I was unable to figure that one out.

    And so many more examples.

    Moreover, I do go outside, and do run into these dangers, more often than most intellectually disabled people I know (who for the most part are far more competent than me at these things, even when they’re people who’re under guardianship and not technically allowed to do them).

    Should I be allowed to go outside without a note from my mommy?

    Ballastexistenz Writes:

    January 6th, 2007 at 10:31 pm

    None of us is able to address this thread from a perspective identical to Ashley’s if we can speak or right.

    However, as someone who was considered to be too severely disabled to have even developed a personality, to be a random collection of brain impulses of various sorts doing things for incomprehensible reasons, and as someone whose perception of the world at times has worked so differently that the kind of thinking I best engage in (and the parts of the brain science says I likely do them with) have been not considered real human thought, I have a sight more clue than a lot of people (including a lot of disabled people) what it means to experience the total externally-based erasure of one’s personhood for others’ convenience (and to have existed in Singerian “non-personhood” much longer than people are supposed to, and other conceptions of “non-personhood” as well, still often being applied to me in the offline world on a regular basis).

    And this is more about oppression than impairment. If you make it a medical thing you’re just engaging in the same old ableist bullcrap everyone does, drawing the line somewhere below yourselves, but still drawing the darned thing.

    You want to know about being an unperson though: Being An Unperson, an open-captioned YouTube video I made on the subject (and tell me, how many of you would believe I wrote this if you met me on the street?).

    Posted by Heart | January 7, 2007, 5:35 am
  56. ABSOLUTELY RIGHT. This is about *oppression*. Not “impairment.”

    And thanks for your good thoughts, Liz– I completely agree. I also totally see what you’re saying there. “Disabled” makes something everybody thinks of as “abled” the default. When really, who is “disabled”? Being “abled” is more about who has the power.


    Posted by Heart | January 7, 2007, 5:37 am
  57. I know that most women here are more interested in the de-sexing of Ashley than the de-growthing of her, but it’s kind of something to think about in that we haven’t heard (at least in a mainstream media kind of way) of anyone artificially making a male more diminutive considering that many males with cognitive disorders (or *not*, even!) are highly dangerous to their caregivers due to their size and strength. A severely autistic, for example, fully grown male can be a serious threat to himself and others; perhaps maybe even a deadly threat. But it’s a female that needs to have her size contained for the world’s convenience, someone with a disorder that leaves her completely harmless to others?

    Posted by Rich | January 7, 2007, 12:32 pm
  58. Off topic– sorry.


    There are 59 posts to this thread. Of those, 11, or 18 percent are yours, and most of them are long. I and others responded to your posts at length as well, meaning probably half of this thread was devoted to your thoughts and concerns and the issues you take around Ashley’s treatment, feminism, women calling themselves victims, my moderation policies, and so on, meaning your issues and concerns have taken up a lot of room in this thread, probably half of the comments section. That would be all right if the issues were being productively and usefully discussed– but they were not. Instead, you continued to distort and mischaracterize what was posted here in ways which were really unfortunate and to post as an antifeminist would post, i.e., suggesting since mothers raise sons, mothers should take responsibility for patriarchy, too; suggesting that to frame patriarchal medicine *as* patriarchal medicine is to speak like a “victim,” various insults, i.e., “You’re not being logical,”also the way antifeminists denigrate women and feminists, and an ableist focus on Ashley’s caregivers and their needs. I and others have repeatedly said we can empathize with the parents and feel for them. But the focus here is not on the caregivers. The focus here has been on Ashley and her treatment and what her treatment means in a patriarchal culture and society– or that is what I intended the focus to be. You wanted to focus on all sorts of other stuff– really, everything *but* Ashley. You wanted explanations as to why I and others have described doctors and the field of medicine in the U.S. as patriarchal (even though I have repeatedly made the caveat that yes, there are good doctors and health care professionals.) That is a diversion to the purposes of this thread. This thread did not exist for the purpose of discussing why the field of medicine is sexist or patriarchal or why doctors are viewed as given to be sexist and patriarchal. That is another discussion for another day. I actually began to post a response to that issue here for your benefit, but I quickly realized that would be a gigantic post, and more importantly another diversion. Once again, instead of discussing Ashley, even more bandwidth would be consumed responding to your particular question and issue, which were side issues.

    You have now composed two entire blog posts of your own which are basically attack posts. Here’s the deal: I will not allow anyone — including women — to come into this blog and commandeer threads in a way I recognize as anti-feminist, diverting the intentions of the thread. The whole world is anti-feminist, anti-woman. The entire blogosphere is anti-feminist/anti-woman. Here, on this blog, we are going to be unapologetically pro-feminist and pro-woman. The entire blogosphere allows individuals, men and women, to post in ways which distract from feminist concerns and issues. The whole blogosphere allows threads to be diverted from discussion of feminist issues. That’s not what we’re about here. Here, we are about feminist issues, here we take a woman-centered approach and perspective. To suggest women should “take responsibility” for patriarchy is not feminist or woman-centered. To demand explanations as to why the fields of medicine and doctors are patriarchal is not feminist or woman-centered (given the avalanche of evidence that they are). To call women’s carefully set forth responses “illogical” or to say we are being “victims” is anti-feminist and sexist– whether a woman says this or a man says this. I won’t have that here. I’m not going to approve your latest gigantic, diversionary comment, or your trackback to an absurd attack post in which you accuse me of making up commments because some of the commenters here don’t have links associated with their names. To me, not only is that preposterous, it’s hateful, nothing more than an attack, not only on me, but on all of the posters here, most of whom I’ve engaged online for five, six years now. This is safe space for radical feminist women and our allies. People posting here don’t always want to be followed back to their own site to be trolled by, for example, all the men who STILL come here looking for shots of Britney Spears’ crotch, and who are angry when they find radical feminists discussing women’s issues. Some people here not only don’t have their own blogs, they don’t have their own computers, so there is no link to attach to their names.

    So yes, I am going to moderate here, always have. If I didn’t, this place would be FULL of trolls and men posting the most vile, hideous threats and attacks on women you can imagine. And yes I’m going to moderate here. Because I’m not going to allow a thread about a subject of this importance be diverted into a discussion which is basically anti-feminist — even if the person creating the diversion identifies as a feminist. Even though I am actually allowing that to some degree now, because I’m responding *again* to your posts and tactics, puddlejumper, though your posts and tactics have consumed probably half of this thread. Again, I won’t have it.

    I know it’s frustrating to be moderated, but you know, if you take issue with what I’ve said here, you can post that on your own blog. It isn’t reasonable to expect that I will devote these huge amounts of time and energy to your individual questions and issues, especially when they are a diversion and especially, again, when you are insulting posters here, mischaracterizing what we’ve said, and so on. So, it’s enough. And yes, I’m going to keep moderating. It’s the ONLY way to have safe space for radical feminists to discuss issues from a woman-centered point of view. You are free to post here, anybody is, so long as they realize that’s what’s going on here. This is my radical feminist blog. It’s going to be safe space for radical feminists, lesbian separatists, people who blame the patriarchy, women and our allies. For that to happen, I have to moderate and do so without apology.


    Posted by womensspace | January 7, 2007, 4:27 pm
  59. Of course, if that cognitively impaired 20-year-old goes out alone and hurts themselves or someone else, the caregivers can be charged with neglect or open to lawsuit. But that’s ok, because caregivers aren’t allowed to have any lives of their own. They’re just there to get shat on, literally by their charge (literally) and by metaphorically by hand-wringing society, who is always ready with advice and scolding but damned nigh invisible when it comes time to help.

    I wonder how many accidents Ballastexistenz has caused or come near to causing due to people attempting to avoid her while she follows ‘those neat lines up the road’, but why should she be expected to consider anyone other than herself? Let the world get out of her way, and if she causes anyone else to be injured, I’m sure it’ll make a nifty blog entry.

    By that standard, we should have allowed my Alzheimers-ridden grandfather to go on his wanderings, perhaps following along behind him while he accosted random people, (because again, caregivers don’t need to have any lives) or just let him get lost and die because he didn’t remember how to eat. For that matter, preventing him hitting my aunt with a shove or groping my aunt and mother or having the police in to stop him beating the crap out of my grandmother was undoubtedly impacting his agency.

    I don’t know why everyone’s so upset about Wendell Williams shooting up a street in NC or that woman throwing her kids into the SF bay. Agency-exercising both.

    Posted by Miranda | January 7, 2007, 4:38 pm
  60. One more thing I meant to say. If you take a look around, you’ll see that most radical feminist blogs don’t even allow comments at all. If you also take a look around, you’ll find out that a buttload of radical feminists have deleted their blogs entirely or stopped posting to them. By far most of these blogs are moderated. For all of the reasons I’ve alluded to here. They got sick of being attacked. They got sick of their comments sections being diverted. They got sick of being threatened.

    I am not going to close my comments section. I’m also not going to host anti-radfem, anti-radical feminist, anti-woman comments sections. I am going to keep posting, keep allowing commments, and I’m going to moderate, so as to make sure that there continues to be a radical feminist/lesbian separatist/woman-friendly venue on the internet. Period.


    Posted by womensspace | January 7, 2007, 4:42 pm
  61. Miranda, I don’t dispute how horrifically hard it is for caregivers in this country. One reason for my own deep empathy is, I’m a mother, and have had to balance my own noncoercive parenting philosophies as against the possibility that my children would get hurt (and I could be charged with neglect), or that it would be discovered I made way for them to do or be what society doesn’t approve of for children (who have few civil or human rights), and I could be charged with neglect, be sued, people could be hurt, and so on. And that would be viewed as okay because mothers aren’t allowed to have any lives of our own. We are just “here to get shat on, literally, by our charges, and metaphorically by a hand-wringing society who is always ready with advice and scolding but damned nigh invisible when it comes time to help.” See what I mean? I do not only understand what you’re saying, I feel for your situation because I have also experienced it.

    You may be a mother, but if you’re not — and this goes to something you said, too, Rich — consider the situation of a mother with a gigantic teenage son, who is much larger and stronger than she is, and who is a threat to himself or others. Not only does society not care about the situation that mother finds herself in, not only will she be punished if she can’t handle it, she is expected to do whatever she does without being paid one penny. And if her teenage son *does* hurt someone, she will be sued for that, can be charged with neglect for that, and if her son ends up in detention or foster care, she will have to PAY MONEY for that, hundreds of dollars a day in most cases, to the state. These are just not situations unique to caregivers; mothers experience them too (and fathers, but fathers can, and do, brutalize their sons to keep them in line, far more often than mothers do, and fathers are not held responsible for their children’s behaviors in the way mothers are.) What I’m saying, though, is, we don’t demonize or marginalize children or teenagers for this as a rule in the way society does demonize and marginalize people with special needs.

    I wonder how many accidents Ballastexistenz has caused or come near to causing due to people attempting to avoid her while she follows ‘those neat lines up the road’, but why should she be expected to consider anyone other than herself? Let the world get out of her way, and if she causes anyone else to be injured, I’m sure it’ll make a nifty blog entry.

    Miranda, with all due respect, and again, I do feel what you’re saying, “I wonder how many accidents teenage boys and girls, and children have caused due to people attempting to avoid them while they act out, or bring weapons to school, or drive dangerously or without licenses or insurance, or drink or use drugs” or whatever? We lay responsibility for all of that at the feet of parents, of course. What we don’t usually do is villanize or demonize children or young people. We understand that they don’t always see things, or understand things, as adults do, we understand they are differently situated than some adults and we make room for that, space for it. We don’t usually demonize them as violent or selfish or whatever.

    But heck, beyond that, there are lots and lots of destructive adults in this world who are viewed as “able.” They rape, incest, molest, attack, batter, run Enron, run the FBI, run the government! They steal, they vandalize, they are dishonest, they are dangerous in traffic, they are dangerous period. Heck, let’s put George Bush into your hypothetical:

    “I wonder how many accidents George Bush has caused or come near to causing due to [his making war on Iraq, war on the poor, war on women, war on people of color] but why should [Bush] be expected to consider anyone other than [Bush and neocons like himself]? Let the world get out of [Bush’s] way, and if [Bush] causes anyone else to be injured, I’m sure it’ll make a nifty blog entry.

    Except that Bush is Bush. We take his atrocities for granted, don’t we? Some of us? And yet we would demonize Ballastexistenz and women like her in the way, I am sorry, you have done.

    By that standard, we should have allowed my Alzheimers-ridden grandfather to go on his wanderings, perhaps following along behind him while he accosted random people, (because again, caregivers don’t need to have any lives) or just let him get lost and die because he didn’t remember how to eat. For that matter, preventing him hitting my aunt with a shove or groping my aunt and mother or having the police in to stop him beating the crap out of my grandmother was undoubtedly impacting his agency.

    I think, again, to suggest that Ballastexistenz would endorse or approve of violence is to demonize and villanize her and all people in her situation. It is ableist and phobic. As I’ve said in this thread, the situation of caregivers is horrible, both the responsibilities they have and the horrible pay they receive, or zero pay, in the case of mothers and women who take in family members who need a lot of care as you describe. I think we need revolution as to issues around people who have special needs and must make their way differently in this world, and I think people who have special needs are making that revolution as we speak, talking about Liz and Pony and Ballastexistenz and others.

    I think we should support them in that, not marginalize, other, or demonize them as especially violent, criminals, selfish, dangerous, or in any other way.


    Posted by womensspace | January 7, 2007, 5:01 pm
  62. ((( Heart )))

    Your dedication continues to inspire me.

    Slowly, slowly, carefully, carefully I feel a tiny bit of hope creeping back.



    Posted by Mary Sunshine | January 7, 2007, 5:05 pm
  63. There’s some truth to what you’re saying Miranda. And it’s getting worse, not better, because women, who to a vast majority, and certainly complete societal expectation, are the caregivers of everyone and everything, mostly unpaid, and we’re pushed to the wall. Someone said it best up thread. The patriarchy is great at medical interventions, not social interventions.

    Posted by Pony | January 7, 2007, 5:05 pm
  64. “I think we need revolution as to issues around people who have special needs and must make their way differently in this world, and I think people who have special needs are making that revolution as we speak, talking about Liz and Pony and Ballastexistenz and others.”

    So are women who choose not to have children, too, or reject their roles as presumed caregivers; IOW, I’m not sure it’s fair to set up a hierarchy where one poster isn’t revolutionary and another (chiefly one who isn’t actually here? I don’t know where you took those words from) is? I think you did a good job — a great job — navigating the complexities of the situation, but I’m not sure it’s fair to go that far, either, because there’s a demonizing tone to that, too, at least to those on the other side of words like that. And as a friend, in full disclosure, obviously I’m sympathetic to Miranda on that account.

    Posted by Rich | January 7, 2007, 5:23 pm
  65. We lay responsibility for all of that at the feet of parents, of course. What we don’t usually do is villanize or demonize children or young people.

    It depends on the age of the person in question. I hold teenagers responsible for such actions as drinking and driving, bringing a weapon to school, raping a classmate, and so forth. If a six-year-old child brings a weapon from home to school in their backpack or hands around cocaine from the parents’ stash because they think it’s candy, then yes, we’re looking at the parents.

    See what I mean? I do not only understand what you’re saying, I feel for your situation because I have also experienced it.

    I’ll grant you a similarity, but it isn’t complete. You might still worry or feel morally responsible, but legally you’re done when your kids hit the age of majority. The responsibility also lessens or at least changes as your children grow and take more responsibility for themselves in turn. For many caregivers, nothing is going to grant them any freedom but the death of their charge, so along with the work, you also get the guilt.

    I’m not demonising Ballastexistenz, I’m holding her accountable for her own admitted actions. She holds herself up as an example of the need for agency, which is fine right up until the point where she is actively endangering someone else. Her writing is sufficiently eloquent and grounded that I find it difficult to believe that she can’t reason that wandering around in the middle of the street is likely to cause an accident. I’m forced to conclude, therefore, that she doesn’t care.

    that Ballastexistenz would endorse or approve of violence

    Where’s the line being drawn, then? At what point, do we get to take agency away?

    I’ll cheerfully demonize Bush all you like, but he’s not actively living in my house and expected to be my problem.

    Posted by Miranda | January 7, 2007, 5:32 pm
  66. Rich, yes, I thnk women who choose not to have children and who reject roles as presumed caregivers are also, definitely, engaging in feminist revolution. I think it’s sexist and wrong that women are expected to be the Big Tit to the whole entire world, the class of people expected to give up our lives for children, the aged, the sick, people with special needs, family members and so on, whether for free or for chump change as is now the case. The problem is, of course, that as women resist and reject these roles imposed on them, we then have a big problem in the form of a culture, a society which could at one time rely on, and blame, women, force women to bear the burden of caregiving, now finding itself lacking in compliant, submissive, willing caregivers. And we find people with special needs with huge needs which go unmet, and so they speak out and rightfully so. I don’t think it makes any sort of revolutionary sense to frame the conflict as between caregivers and people with special needs, or to demonize either group, the first as selfish or uncaring, or the second as selfish and demanding or dangerous. This is a problem of a patriarchal, systemically dehumanizing and brutalizing society and culture which needs to be addressed on that level, just as SO many other issues do, health care, mothers’ rights issues, children’s rights issues, and so on.

    I got Ballastexistenz’s post from a thread about Ashley on Alas. All right, tell it to me straight you wimmin, (and Rich. Heh.) Should I always and unfailingly link to blogs when I’m REALLY REALLY peeved with the blogger (as with Amp, whose blog is inextricably tied to racist, misogynist pornography)? Is it bad blogger form not to? Does it seem more petty than principled? I could use some feedback. Ballastexistenz rightfully imo reamed Amp a new one, and others. The thread on Alas is horribly ableist. I can see that and I’m not particularly well-versed or well-read on issues around ableism.


    Posted by womensspace | January 7, 2007, 5:41 pm
  67. I wonder how much has Ashey’s lifespan been reduced because of these things done to her. The uterus produces a hormone that protects the heart. Women with hysterectomies have a greater chance of getting diabetes and heart disease. The media don’t tell you this because many doctors would be sued or thrown in jail. Also, chopping off breasts don’t reduce the risk of breast cancer 100%. When HRT was taken off the market, a year later breast cancer declined 7% in one year (186,000 cases instead of 200,000 new cases).
    Since Ashley was medically mutilated and pumped full of hormones (several times more than a grown woman), she could get a nasty case of cancer, brittle bone disease or even have a heart attack.
    Instead of living to 70 or 80, that poor girl would be lucky to make it to 40-50.

    Posted by Catty | January 7, 2007, 5:47 pm
  68. Miranda, I understand that you would hold teenagers responsible for bringing guns to school, drinking, etc., but our society holds parents responsible for this, and that was the point I was making, just as society holds caregivers responsible for their charges (so that both parents and caregivers can be sued, found to be negligent, have their children taken away, have their licenses taken away, etc.) Parents are held responsible until children are at least 17 and sometimes all the way through to 18, depending. I agree that the comparison is not perfect; my main point was that this is not a situation specific to caregivers, mothers experience it, as well, and yet children are not demonized or villainized for being who they are– children, teenagers– in the way people who are differently-abled are so often demonized.

    I realize Bush isn’t living at your house :), my point was that we don’t hold government or military leaders or men in high places, doctors, lawyers, politicians, corporate CEOs, to ANY kind of standard, really, so far as violence and accidents and so on, in the sense that we just expect them to BE violent, to CAUSE accidents, to imperil people’s lives. to imperil whole communities and even countries. We don’t demonize them for this. We don’t even call them “violent” or “dangerous” — well, some of us do, but most people don’t, and even when we do, we don’t hold them personally accountable in the way some are holding very vulnerable, marginalized people responsible or accountable for *possibly* endangering someone in just the course of living out their lives and not intending to endanger or hurt anyone.


    Posted by womensspace | January 7, 2007, 5:49 pm
  69. Thanks, Mary Sunshine!

    And love to you, too. 🙂


    Posted by womensspace | January 7, 2007, 6:02 pm
  70. Hey Catty. Welcome. You are right few women know that about the uterus, hormones. Patriarchal medical science is a juggernaut that believes a woman can be created in a laboratory, or a surgery theatre.

    Posted by Pony | January 7, 2007, 6:08 pm
  71. Also, I am horrified about how many people defend this. If that was a boy with his cock and balls cut off. His parents would be in jail forever. Also, that name pillow angel makes me sick. The term pillowdoll is used for women who lay back during sex and let the man do all the work. Keeping her infantile reeks of pedophilic vibes. I surely hope no one in her family is sexually abusing her and using this as a means of covering the abuse. I wouldn’t be surprised, considering how her parents seems to be disdainful of the female body. They act like breast and periods make women uncomfortable and sick with bedsores. That is a lie! I am large breasted and I am not uncomfortable with my breast. Period pain can be treated with a Midol. As far a rape is concerned, why don’t people stop thinking that large breast will make one a victim. A lot of babies are raped also. Most sex offenders can be highly moralistic and disdainful of female sexuality. They are hypocritical too.

    Posted by Catty | January 7, 2007, 7:06 pm
  72. I wonder if this ‘treatment’ will actually make life easier for Ashley, or make a very great difference to her caregivers. Especially given the invasiveness of the surgery and so on, the potential risks, etc. There are many less drastic things to do, e.g. the right Pill (yes, I know it’s carcinogenic, don’t like it, don’t take it, but) will reduce cramps & bleeding (if that turned out to be an actual problem).

    Posted by profacero | January 7, 2007, 8:23 pm
  73. Carcinogenic isn’t all these pills are. As women in peri and menopause will tell you. They do not treat the original problem but for a short period if at all until the hormone mix is so screwed up it creates new disease including pancreatic and neurological problems. A will suffer physically a lot. Her parents, less.

    Posted by Pony | January 7, 2007, 8:30 pm
  74. My post got sliced. ^_^ What I meant to say was that I agreed with Catty on pretty much everything, except perhaps on the part of her parents being potential sexual abusers? I haven’t read anything that strikes me as sexually predatory, more in that they’re really sexist in that typical, Christian way. So they think she’s more at risk of being sexually assaulted, since she can’t scream, fight back or run away in the same way a ‘real woman’s responsibility’ would be.

    Whether it’s for 18 years, or a lifetime, it’s the family’s responsibility to _ensure_ Ashley isn’t surrounded by sexually predatory caregives. Period.

    Hope this doesn’t turn into a double post.

    Posted by Pramiti | January 7, 2007, 8:46 pm
  75. Pramiti, I took out the sliced one. 🙂

    I think you’re right about the parents being the typical devout Christian type of people. These people infantilize women and girls all the time and refer to them in ways that sound (and are) really off; their comments aren’t so much sexual as they are objectifying, but the latter two things can sound very similar.


    Posted by womensspace | January 7, 2007, 8:52 pm
  76. Exactly. Objectifying and infantization.

    Posted by Pramiti | January 7, 2007, 9:25 pm
  77. On the hysterectomy to save her from menstrual pain – how likely is it, statistically, to get cramps bad enough to make that a good tradeoff? It all smacks of Fear of Female-ness.

    Posted by profacero | January 8, 2007, 5:36 am
  78. Also, a hysterectomy can leave a woman sore for up to a year. Some tradeoff huh? Another trend I find disturbing is the rise of c-sections. In Brazil 2/3’s of babies are born that way. In the U.S. 1/3 are born that way. In Hong Kong 1/2 are born that way. OH the inhumanity of it all. Everyone is always talking about FGM in Africa. What they are doing to women in the west is no better. If FGM is to stop in Africa we in the west must stop the butchery of women in the west.

    Posted by catty | January 8, 2007, 12:48 pm
  79. Hi catty,

    Right on!

    Here in the west, women’s bodies seem to have become unacceptable lumps of flesh, to be sliced up and rearranged at will. Healthy female biological processes are treated as “dangerous” or as a state of ill-being.

    Every aspect of our physical apperance is under intense scrutiny, and considered ugly for the slightest reason.

    And women who “help” other women to try to correct these infinitely many flaws are considered to be doing us a kindness, viz. Oprah.


    Posted by Mary Sunshine | January 8, 2007, 3:27 pm
  80. Heart, they are absolutely Christian and of the flavour you and I are all too familiar with; I finally got the photo page to load and you can tell by the picture on the wall of Ashley’s room in the photo entitled “Ashley in her nest”.

    This only confirmed what I already knew,. of course.

    Posted by anonymom | January 8, 2007, 5:12 pm
  81. I believe it is prudent to pick your battles. Therefore, I do not see this as a feminist issue. I see it as a private choice made by a family to manage the life of their child in the best way they can for all concerned.

    It is beyond the average persons comprehension, the daily struggles and joys developmmentally disabled people bring to the lives of their families.

    Until you’ve cared for them and gotten to know them, changed their diapers, fed them, comforted them, you don’t know how much they can enrich your life. Equally you do not understand the pain and confusion that these female children face when their bodies go through the natural hormonal changes that we take for granted.

    Ashley’s parents made a difficult decision. They have chosen to love her in the best way they know how.

    Posted by mssuicidebomber | January 8, 2007, 5:13 pm
  82. I think one thing that stood out to me (aside form the obvious) was the way that the family’s faces were blanked out. As if only Ashley was undeserving of privacy. It is a sad and misguided family that believes the best way to prevent anyone from molesting their daughter is to mutilate her.

    Posted by Pippa | January 8, 2007, 7:52 pm
  83. Miranda says: I’m not demonising Ballastexistenz, I’m holding her accountable for her own admitted actions. She holds herself up as an example of the need for agency, which is fine right up until the point where she is actively endangering someone else. Her writing is sufficiently eloquent and grounded that I find it difficult to believe that she can’t reason that wandering around in the middle of the street is likely to cause an accident. I’m forced to conclude, therefore, that she doesn’t care.

    Accountability is fine, but willful ableist ignorance of what Amanda (Ballastexistenz) is saying about herself is obnoxious. If you reread the comments of Amanda’s that Heart posted above, Amanda is explaining how her brain works, how her cognitive impairments allow her to be so amazingly articulate online, but give her trouble with crossing streets. As I understand it, she uses a machine like Stephen Hawking has to speak, as well. Amanda’s whole point is that the ability to do or not do one thing does not reflect upon the whole of a person’s abilities.

    Just because Ashley is diagnosed with the cognitive development of a three month old does not mean her memories aren’t much more expansive and sophisticated than the typical infant. Just because Amanda is a very methodical and articulate writer of her personal experiences does not mean her brain processes visual information like we laypersons expect it to.

    Good overall discussion here. It’s nice to see a thread on Ashley not deteriorate into a discussion on the question of her humanity, for example. Or like at Majikthise, include comments that they should just stop feeding her and end the trouble for all.

    On terminology, “disabled” surely is lacking, but it’s an improvement over “handicapped,” and is at least recognized as a political grouping of people so that we can advocate for ourselves some as a group. I wish there was a better way to include interests of the elderly disabled in a more encompassing term so more people could see what a universal issue disability is. Instead of “abled” I use “nondisabled” so that people like me are the rhetorical default. 🙂 I’m not a fan of “differently abled” mainly because it often accompanies “pillow angel” and “special” language and feels patronizing.

    Posted by Blue | January 9, 2007, 8:45 am
  84. I like the term physically challenged better. There is a movie called The Miracle Worker based on a true story. It is about aan elderly woman who took in a special needs child. Despite all of the naysaying about how the boy would grow uo to be nonthing, the old woman loved the boy anyway. The boy grew up to be a concert pianist.

    Posted by catty | January 9, 2007, 12:44 pm
  85. Ballastexistenz made me think about a lot of issues with her posts, but last time I checked, she was being given the “civility” talk. I have to go back to see what’s been written. I’ve just been busy.

    I just get in a knot I guess when the issue of personhood and its rights comes up and who gets to fit and who doesn’t. I think that issue ties a lot of movements together.

    I think it’s the major part of privilige of any type to get to decide that for everyone. And I didn’t really understand the whole thing about whether you can be too disabled as it’s defined by some of the posters to have rights as a human being.

    Posted by Radfem | January 9, 2007, 4:23 pm
  86. UGH, the civility talk! Ohmygoddess on high, I will NOT go in there! :/

    blue, thanks for everything you’ve posted, here and in other places. I love the way some of us, at least — well, those of us who weren’t already there, anyway, and that would at least be me! — have worked all the way through to the philosophical and theoretical underpinnings of arguments against ableism and to the reasons the disabled are in fact an oppressed minority. Bottom line, what I see is, just as other groups are marginalized and disenfranchised, disabled people are, as well, and their dehumanization is not about “differences” they have which justify their being treated “differently”, this is about the privilege non-disabled people enjoy and their willingness and capacity to oppress the disabled, just as racial minorities, women, lesbians and gay people, and transpersons, and others are oppressed. What is really shocking is that self-identified progressives and feminists use what is basically hate speech, dehumanize the disabled, say all sorts of bigoted things, and nobody speaks up or says anything about it.

    A while back I got rather rudely and severely taken to task by a woman who is mentally ill for using words like “crazy” and “psycho”. That was quite the consciousness-raising come-uppance for me, and I’ve tried to stop using any terms like this which demonize the mentally ill or any disabled people. I had done some of my own work — I watched and was very moved by A Beautiful Mind (didn’t like the sexism in it, but that’s for a different thread some other time). I listened to the amazing autistic woman who was interviewed on NPR who had done work with cows in the slaughterhouse? Am I recalling correctly? Maybe had written books about it? The thing is, with other oppressed groups, there is generally, in progressive circles at least, consensus about the fact of a group’s oppression, and a commitment to no tolerance for hate speech and bigotry. This STILL does not exist for disabled people. All around, including in feminist/progressive circles, people use words like “lame,” “psycho,” and “retarded,” derivations of words with “-tard” in them as insults. There’s so little support for the rights and sensibilities of disabled people even among those who say they are committed to human rights for all people. I’ve had some famous fights online because someone used the word “fucktard,” for example, and I called it out and got clobbered by people calling me “politically correct.” In this situation it’s just egregious though! Saying Ashley should not be fed? Justifying cutting her up without any consent? Dismissing her because she is said to have the capabilities of a three-month old? I love what you said, blue, about the fact that she probably has a much more expansive memory than most three-month olds. My position is, I don’t believe doctors are able at this time in history to say what her capabilities are. I think they are guessing based on what they see with their eyes. But as Ballastexistenz’s posts demonstrate, judging a person’s capabilities based on what can be seen of them is going to take us right down the wrong road, especially if they cannot communicate as others communicate and cannot tell us what they feel or think or want.

    Something that really chaps my hide is, all of that horrific dehumanizing that is going on in other places, i.e., Majikthise’s place, Alas, ends up attributed to those of us who are radical feminists. When in fact, our beliefs compel us to stand firmly for the rights of all people, animals and the earth not to be bludgeoned into submission by those who have the power to do so and are willing to. It’s people who identify as liberals, including liberal feminists, who seem most interested in making these decisions for other people’s lives.

    As to needing to use the word “disabled” so as to have a political group that is recognized and can work for change, I sure hear that. That’s the reason it’s not going to do to do away with the word “woman” as so many seem determined to do. As though if you eliminate the word “woman,” the oppression of women no longer exists, I guess. Argh.


    Posted by womensspace | January 9, 2007, 5:20 pm
  87. I’m a bit confused. My comment was moderated. I was not abusive, or condescending. I spoke from the perspective of a caregiver who has had experience caring for women whose lives were spent exactly as Ashley now spends hers. In the care of their families.

    I saw her situation not as a feminist issue but a quality of life and health issue. I’ve seen the daily struggles, I’ve toiled in their service, making sure they were fed, changed, moved regularly to prevent bed sores. I’ve engaged in their physical therapy designed to prevent their useless limbs from becoming completely atrophied because they do not have the brain function to move them on their own.
    I said that we should pick our battles. I did not see this as a battle that could be won. I still believe that the family is doing what they see as best for all concerned.
    Given my life experience as a woman I am certainly aware of the many inequalities facing women. Have been seen as less than a man and treated as such by men, doctors, employers, government, media.
    Why was my comment deleted? Was it because I did not jump on the bandwagon?
    I was much more concerned over the Terry Schiavo case where the government allowed her to starve to death thereby relieving all of the burden of her care. I’m more concerned about the sexualization of little girls, and the sexual enslavement of women and children worldwide, often with the knowledge of the governments involved.
    I believe until you have had direct experience caring for individuals like Ashley, you do not know how difficult it is, nor can you comprehend how difficult it was for the family to make the choices they have made regarding her welfare.

    Posted by mssuicidebomber | January 9, 2007, 7:07 pm
  88. mssuicidebomber, I didn’t see any comment from you, aside from one you posted about, if I’m not mistaken, something else? Your recent comment might have gone into the spam queue, which I haven’t checked in a few days. That happens sometimes and I will take a look.

    I agree with a lot of what you say, but my focus, and others’, has not been on the caregivers, other than to say I am sympathetic to their situation and understand that they believe they are doing what is right.

    I don’t think our feminist discussions are about losing or winning battles. I think they are about feminist analysis of issues of concern to women, especially. Focusing on what has happened to Ashley is important feminist work, progressive work, anti-ablist work. To focus on her situation and the decisions made in her case doesn’t necessarily indicate blanket condemnation of what the parents have done. As I’ve said in this thread more than once, I am more interested in discussing how it is that we have come to this point in history in which these options are available in the first place. I am really not very interested in feminist denunciations of caregivers or the disabled for the purposes of this thread (although caregiver issues ARE an important discussion for feminists to have.)

    I will take a look in my spam queue and if your comment is there, I will unspam it. However, I would like, in this thread, for the focus to be on Ashley and on a society which addresses her issues by prescribing hormones, surgeries, and extremely invasive and brutal treatments. I do not want to focus on the difficulties of caregivers, for the purposes of this thread. As I’ve also already said, we stand in need of revolution in the field of medicine, health care, caregiving, disabled people’s rights, and you name it. I would like to talk about what that revolution might look like, beginning with what is actually best for Ashley and people like her.

    Just not interested in seeing happen here what happened at Pandagon, Majikthise, or Amptoons. If I think a comment will lead us in that direction, I will not approve it.


    Posted by womensspace | January 9, 2007, 7:24 pm
  89. Okay, I found your comment, mssuicidebomber — it was in the spam queue. I don’t really know why some comments end up in there, but yours did, and I apologize.

    In response to your earlier comment now unspammed, I think we have to consider anything a family does to or for its children feminist issues. In fact, I think we have to consider the existence of nuclear families, period, as a feminist issue, and in particular, the way girl children have been considered the property of their fathers. Girl children, herstorically, through the ages, have been harmed in their families, by their families’ decisions, whether the decisions were not to educate them, to incest them, sexually assault them, force them to serve the family or the men in the family, subject them to footbinding, FGM, or arranged marriage, and so on. I don’t think there really are any exceptions to this. Whatever is done to a girl matters to feminists. The fact that her caregivers meant well is not the issue, as has also been repeatedly posted in this thread.

    Your previous post is here.


    Posted by womensspace | January 9, 2007, 7:30 pm
  90. Blue I have worked with disability advocacy groups, and I am also one with some dis-abilities, or handicaps. I have seen advocacy work on behalf of those with disabilities come to a stand still over and over and over as each person with a disability holds the other disabled persons in the group or organization, and able persons, hostage with anger and manipulative behaviour. There are people like that. It’s not some temporary reaction. It’s a way of being within the disability community for some.

    Posted by Pony | January 9, 2007, 8:08 pm
  91. Pony, definitely true. But I think power struggles and people that seem impossible to work with are everywhere. I’ve had that experience in feminist organizations, as well. I don’t find it to be a specific characteristic of disabled groups only.

    Posted by Blue | January 9, 2007, 8:42 pm
  92. Heart, seen from your perspective the whole world is a feminist issue. I can respect that.
    Having worked as a caregiver I cannot look at this family and their choice as strictly a feminist issue, but as a family issue, with feminist undertones.
    They are a family coping with the needs of a child that consumes a tremendous amount of the families resources.
    They could easily have had her institutionalized and made her someone elses problem. It takes great courage and love to care for a child such as Ashley. Most people do not understand what this family has had to face.
    I think the debate will continue to rage around the feminist issues of patriarichal domination and medical abuse of women. This one child and this one family is but a miniscule example becoming a lightening rod for many factions.
    My compassion is with the family, and Ashley. I do not feel the need to make their case an example to be debated. Because their choices have been made under the most difficult of circumstances and I do not see evil here. I see people trying to make the best of a difficult situation.

    Posted by mssuicidebomber | January 9, 2007, 9:03 pm
  93. Heart says: What is really shocking is that self-identified progressives and feminists use what is basically hate speech, dehumanize the disabled, say all sorts of bigoted things, and nobody speaks up or says anything about it.

    One of the most surprising and infuriating directions the Ashley discussion has gone off on among feminists is the defense of her parents’ actions because she’s white and if she did get pregnant she could become the media cause of the religious anti-abortion crusaders. I mean, the concern that she’ll be a future helpless tool of politics is touching, right? Except, other than specific ideology, how is that different from now? It’s a projection of what nondisabled white feminists don’t want to see (none of us want to see), but is hardly the most worrisome issue when Ashley’s life and the precedents her parents, the medical community and approving feminists are supporting are viewed from the perspective of disability rights. Suppose all that came to pass for a nice white disabled girl similar to Ashley? Are these concerned feminists then going to concern themselves with safety from sexual assault for disabled women? White and colored women? At what point does such a woman stop being a political football for everyone’s abortion concerns and have her own needs specifically addressed as a woman and body deserving of dignity? If this consideration isn’t a priority before such a political storm, it certainly won’t be during or after it.

    Posted by Blue | January 9, 2007, 9:55 pm
  94. Yeah, Blue. Basically everybody makes it about them and their issues. It’s about abortion rights, or it’s about caregiver issues, or it’s about the threat of sexual assault or class issues or the family or whatever. It’s about everything but Ashley herself and why people think the right thing to do is cut her open (or worse!) without having any idea whether she wants that or would agree to it, or even whether it will make her life better.

    One thing I think about is the hubris of all of these arguments, really. Something I always figure in in these discussions is, who the hell knows if she, or any of us, will be alive tomorrow! Tomorrow, five years, 10 years, none of that is promised to any of us. How well those of us who have faced down death know this! I think once you believe that you are in the process of dying, for real, in real life because you *are* near death, you never look at life in the same way. It’s as though so many in this discussion don’t even consider that what the hell, they might be dead tomorrow. Ashley might be dead tomorrow. If she were to die tomorrow, or if they were, would they be happy they’d subjected themselves or her to all of these many treatments? Or would they agree she’d have been much happier living her life as before, no pain, no cutting, no stitching, no strangers in white face masks, no hormone treatments. To me, that’s their answer. If Ashley were to die tomorrow and you asked her if she wanted all this today, I am positive she would say no. Well then. Forget about it.

    By all means, let’s make Ashley the stand-in for everybody’s fears, projects, projections, and political agendas, the poster child for every conceivable cause except the one that seems most central: the right a human being has to not have her bodily integrity violated — by anybody — without her consent.


    Posted by womensspace | January 9, 2007, 10:43 pm
  95. Heart, I thought I had said all I had to say on his subject. I spoke from the perspective of someone who cared for people like Ashley who depend totally on others for their very existence. Your statement,”without her consent” is nonsensical to me. Ashley cannot give consent, she can’t wipe her own butt.
    That is why all this furor over feminist issues and Ashley makes no sense to me.
    Obviously, these comments are all reactionary, yours included. You have not looked into the face of a young women whose cognitive function is that of an infant, and whose body is undergoing the hormonal changes of an adult female. There is no capacity for understanding, there is only a primal reaction to pain.
    Ashleys parents have weighed a lifetime of pain and confusion against the pain and confusion of surgery now.
    I find the reactions of these posts, yours included, to be misguided.
    I applaud your willingness to fight for and engage in the struggle for equal treatment and respect for women.
    Ashley is an example to hold up as a poster child for what is wrong in the world. She is alive, she has a family that loves her and is sacrificing for her. She already has more than I have ever had.

    Posted by mssuicidebomber | January 9, 2007, 11:53 pm
  96. I think in earlier comments you’ll see that we’ve talked about the issue of consent, I have, others have. I think we have a long way to go in attempting to communicate with disabled people. I don’t think the thing to do is say, “Well, they can’t communicate the way we do, so they can’t give consent.” I also don’t think that not being able to wipe one’s butt says anything about the cognitive functions of a person, or whether she could give consent if we were able to understand and communicate with her. The more important thing imo is, if she can’t give consent, I think that’s your answer. She can’t give consent so her bodily integrity ought to be respected, not overridden by people who think they know best.

    I don’t think we know what girls/women’s reactions to their cycles might be, just by looking at them. More importantly, we don’t know what their reactions to cutting and operating on them, and bombarding their bodies with hormones might be, just by looking at them.


    Posted by womensspace | January 10, 2007, 12:00 am
  97. You hit the nail on the head, we don’t know. So given that the family is responsible for her care and they are the ones who interact with her everyday, they are the most qualified to make the hard choices for all involved, including Ashley.

    Posted by mssuicidebomber | January 10, 2007, 12:23 am
  98. I’m not talking about advocacy as we see here on blogs, or in women’s rights groups, or feminist organizations such as MitchFest for example. I’m talking about fully paid staff, directors, government funded advocacy groups; office, salaries, budget etc.

    As for your comment sure, it happens everywhere. I’ve never seen anything like what I’m talking about. It is much worse. There are some people who will milk the system for all they can get, and be very manipulating and using of their disability. They have no intention of any kind of getting on with life. They are not only disabled, but suffer from extreme disability related illness because they cannot move over the hump and get on with life.

    I find your comment patronizing.

    Posted by Pony | January 10, 2007, 1:50 am
  99. On primal reactions to pain:

    So, pain of surgery, hormone bombardment, and their short and long term implications is OK, Ashley should be able to handle those.

    Pain of menstrual cramps, on the other hand, is more than she’ll be able to take.


    Posted by profacero | January 10, 2007, 1:52 am
  100. Pony:
    I am talking about real life advocacy and support organizations, as well.

    Without you giving an example or two of exactly what you’re talking about, I really can’t understand what you mean. Among my questions: What exactly is “getting on with life”? I’m not sure I understand what you mean by this either: “…suffer from extreme disability related illness because they cannot move over the hump and get on with life.”

    Posted by Blue | January 10, 2007, 2:31 am
  101. Getting on with their life to the best of their abilities to be as independent as possible. Some disabled people wallow in it.

    Posted by Pony | January 10, 2007, 2:51 am
  102. I just realized who you are. We’ve had this discussion before on Ampersand, and you asked me the same questions there which I answered there. You didn’t accept my answers then. I don’t see any reason to repeat them.

    I also remember you did not withdraw from being a co-blogger at Alas a Blog after it was revealed he had joined the porn industry. In fact, you made little jokes about what he’d done.

    Posted by Pony | January 10, 2007, 3:02 am
  103. That’s true, some people do wallow in their disability, just as other people given societal victim status wallow in that too. There are quite a few things about how some disability advocacy and support is set up that encourages or facilitates this, and in addition to some people just being asses in the way they wallow, others are thoroughly “institutionalized” by our ableist society’s treatment of them.

    I didn’t realize you weren’t perfectly aware that I am the Blue and Blue Lily who has frequented many of the same feminist sites online as you for perhaps five years now. It’s not that I don’t accept your answers, it is that I find them ableist and wonder if my better understanding what exact experiences you refer to would alter my opinion or further confirm it.

    I’ve guest blogged at Alas. That’s quite different than being a co-blogger for a variety of reasons. My guest blogging month there began a couple weeks before Amp made the sale of his domain name clear to readers and
    guest contributors like me. I don’t recall being flip about Amp’s choices and my feelings about them. Somewhere in the month of September I did comment on Alas about his connection to porn and whether I said something humorous or not, my reasons for finishing my month of cross-posting and maintaining a link to his site on mine were sincere.

    I’d be incredibly surprised if Heart wasn’t aware of all this.

    Posted by Blue | January 10, 2007, 3:50 am
  104. No kidding, profacero. I’ve seen you all over the place reminding people of this, and mostly being ignored! I’m not sure why. I do not get why surgeries, male strangers cutting women’s bodies up, needles, hormones, painful recuperation, lifelong consequences and hence, lifelong treatments for the consequences, are somehow preferable to menstrual periods and puberty.

    Not to mention, I find the characterizations of puberty and menstrual cycles I’ve read disturbing, as though these are really horrifically painful events girls and women should not be expected to endure, or, once again, “diseases” to be “treated” if you have a chance to treat them. Some girls and women don’t experience any pain, to speak of, during puberty. Bleeding every month doesn’t necessarily hurt girls or women– it’s just bleeding for many, a bit inconvenient, but evidence that their uterus is doing what it’s supposed to do and sloughing off its lining. Also evidence that no pregnancy has occurred. I’ve had that thought a couple of times. If you remove Ashley’s breasts and her uterus, not only do you not remove her chances of being raped, you also remove evidence, in the form of pregnancy/no menstrual period, that she HAS been raped. Why is this a good thing? To be raped and nobody knows about it because she couldn’t get pregnant– is that good for Ashley? Kind of like, ignorance is bliss, if she can’t get pregnant, we’ll never know, which is horrible to say, I know, and I’m not accusing the parents of thinking this way, but I also am not willing to not say something about it, (sorry for all the double negatives, too tired to say it more eloquently).

    pony and blue– my thoughts are as follows:

    Milking the System I hear you, pony, about milking the system, being manipulative, and so on. It reminds me of thoughts I’ve had about white mothers of biracial children who do really horrifying things and give all of us a bad name. It’s hard to sit by and not say anything about this, because we know that we have not done these things, we have not been manipulative, we have suffered, ourselves, done without, to live according to our own lights and with integrity. We know what they’re doing, and it sucks. The way I put things together is, I just give women hundreds and thousands of passes. One of my closest friends and mentors, a woman I loved, in every conceivable way, for many years, was manipulative and assholeish in the way you describe about being disabled. To this day, I don’t honestly know if she really was disabled. She had chronic fatigue syndrome, she had Crohn’s disease, she had chronic inflammatory myofasciitis, she was hypoglycemic– in other words, she had been given every “wastebasket” diagnosis there was to give a person. She did appear to be in tremendous pain, often, and used a cane, and stayed in bed a lot. But, she was also in an abusive marriage, following previous abusive relationships with men, she had a messed-up son, she had many struggles. She had always been very poor. She’d suffered so much in her life, and she was absolutely brilliant, one of the most brilliant, though under-traditionally-educated, women I have ever met. I think she was a lesbian, totally closeted, maybe even to herself, though we never spoke of this. She did all sorts of imo manipulative and dishonest things in the attempt to get disability and other kinds of benefits, in an attempt to get all sorts of narcotics and medications, and sometimes tried to involve me in her attempts. My thinking was, this was the deal she was cutting with the patriarchy. She didn’t fit in this woman-hating world; she could find no place in it. She had been relentlessly abused, for all of her life. Her response was disability, I think. This is not the way I would handle things, but I understand why she did what she did. Getting “sick” is a time-honored mechanism women have used to drop out of an oppressive world, oppressive relationships, abusive sex, nightly rape, when they can see no other way out. I just can’t fault them for this. But I do understand the feelings of resentment that are possible for those of us who have knuckled under and did what we had to do to take care of ourselves. That’s been my path, too. But my love for my sisters compels me to think deeply about why it might be that not all women can take the path I’ve taken.

    Ableism Like any other oppression, to advocate for the rights of disabled people as against an ableist culture is not to say that disabled people are all good, moral, wonderful, admirable, anything else. Disabled people, like people in all marginalized, oppressed groups, are just people. There is no moral virtue inherent in being disabled. The reason to advocate for disabled people’s rights doesn’t have to do with the fact that they “deserve” human and civil rights because they are so noble, or something like that. It has to do with the fact that they are *human beings* and deserve to be treated as all other human beings are treated. Disabled people are not manipulative or dishonest or whatever because they are disabled, iow. Disabled people are human beings, just like all the rest of us, and tha tmeans some are manipulative and dishonest, but what else is new, you know? To advocate for human and civil rights for the disabled is not to excuse manipulative or abusive behaviors in any way.

    Amp My decision has been not to de-link or shun feminist women who have continued to link to Alas, a Blog or to blog or comment there. I want nothing to do with Amp. I think what he has done is absolutely inexcusable and I’m not willing to forgive him, I’m just fucking done with his bullshit. But I’ve watched and engaged with Amp for a long long time, at least six years, and my view of his behaviors is informed by what I’ve observed, over many years. I wish that Maia and Abyss2Hope and Blue and RachelS and all of the amazing women who, in fact, make Alas worth visiting, would stop giving Amp credibility by their participation. But… I also understand that they are on their own feminist journeys, they are weighing things, measuring things according to their own priorities and politics. I can’t diss them for this, just as I don’t want to be dissed myself for the decisions I make about my own activism, which might be wrong sometimes, but I need to figure that out for myself, I need that room, that space. I cut women — not men — but women ENDLESS amounts of slack this way. I know that what they do, what they decide, today, might change completely tomorrow, next month or next year, and I want to be around to be their friend and sister, no matter what, now and then. I include women on my blogroll who are sex positive, so-called, who participate on Alas, who advocate for things I don’t believe in, not because I agree with their choices, but because in my view and based on my observations of them, they have integrity, they are doing the best they can to live according to their integrity, in a world that makes it really hard for women to do so.

    So, I want to make room for all sorts of women here, in this space I am making for women. I hope we can figure all of that out.

    I love you all.


    Posted by womensspace | January 10, 2007, 4:55 am
  105. I’ve never noticed that women more than men disabled had some corner on the manipulation. If there was one it would be men, because they are the largest percentage of the formally accepted and subsidized disabled (from risk behaviour). Mostly I resent the idea that if one is disabled one gets a pass (similar to how I feel about native or black men who as I’ve said elsewhere, whore out my sister). With disability, we who are afflicted have to quit playing the pity game, and the rest of you have to quit being guilted by it. It’s the same game as reverse racism.

    Posted by Pony | January 10, 2007, 6:38 am
  106. The problem is consent. Guardians do NOT always have their wards’ best interests at heart, as we saw in the Schiavo case (though constantly lied about in the progressive blogs and the mainstream media). If there is NO written directive by the person who is disabled, then NOBODY, repeat, NOBODY, has the right to mutilate or kill that person.

    You are either FOR civil rights or against. This utilitarian “philosophy” has so twisted medicine and public discourse that people don’t see these issues as human rights violations.

    The parents and the doctors should be tracked down and prosecuted for child abuse.

    Posted by Susan Nunes | January 10, 2007, 3:06 pm
  107. I haven’t noticed disabled women being more prone to manipulation that men, really, either. I don’t know if you’re associating “risk behavior” that leads to disability as part of this tendency to manipulate, but I’d disagree with that.

    I agree with the rest of what you say just above completely, Pony. When people are given so much societal dispensation they cannot really be a part of that society, and that should stop in all directions.

    Posted by Blue | January 10, 2007, 4:04 pm
  108. I also wasn’t saying that women are more prone to manipulating the system than men are– I wouldn’t have any way of knowing that. I was just thinking out loud, really, remembering experiences I’ve had with women, and thinking of reasons women might do some of the things they do which seem manipulative, how being a woman in a sexist society might figure in, and so on. Mostly I was just processing– dangerous to do “out loud” I know! But also– we are talking about a girl here, who will grow into a woman and so my considerations are around the situation of disabled women. When I read what is said here about the issues of disabled people, I am reading as I always do, in a woman-centered way, not thinking so much about boys and men, thinking about women and girls, in part in my own larger project of decentering men, making women the default, our issues, as much as men and men’s issues are the default. So I talk about the women.

    pony, I’m enraged with you re your sister, dear god. 😦 I didn’t know about that, hadn’t picked up on it somehow in what you’ve written. I think there’s a lot lot lot of antagonism and acrimony in the direction of white girls and women– a lot. My own theory is that for many reasons, hating white women is safer and in some ways easier than hating white men, the stakes in hating us are definitely lower, compared with hating white men, and there are some very good writings about this which I should link to. At the same time, I don’t think we can call hatred of white people, including white women, reverse racism. It’s not really possible for people of color to be racist against white people, even “reverse” racist. It’s possible for people of color to be incensed over racists and racism and to, for various reasons, see us and treat us as though we are racism embodied, with a face and a name, and we feel that at times, but that’s still not racism, even though we might not deserve whatever we are being dished out because we’re the stand in. I think the deep resentment and vilification of white women is really sexism unmodified, and that it is in white men’s best interests to stoke that hatred, stoke it, stoke it, make sure it continues, and so we get demonized in various ways especially by white men, but that’s a white man/white woman thing, not a reverse racism thing (and I’m not including you in my “we” in that, pony, I know you are not white).


    Posted by Heart | January 10, 2007, 5:46 pm
  109. …But most of the disabled people I know enjoy being as self-sufficient as they can, and are proud of it. Manipulative individuals, system-milkers, I know lots of them, of all kinds, including some disabled people, but I really do not think the disabled have cornered the market on manipulation.

    Posted by profacero | January 10, 2007, 7:20 pm
  110. I know many if not most people have unwarranted faith in the medical system, but for the life of me, I cannot see any way this treatment will make the life of this unfortunate girl any better or easier. I can think of lots of ways it could make her life worse. Her doctors and parents may have good, though misguided, intentions, but the road to hell is paved with just such good intentions.

    Posted by Aletha | January 11, 2007, 7:51 am
  111. I agree the Ashley Treatment is horrific.

    Heart, you said, “It sounds to me as though this is a Christian family; if I were a betting woman, based on the way they say what they say about God, and based on their reliance on doctors and traditional medicine, I’d say they were Roman Catholic. They seem to be devout Christians.”

    I am wondering curious why you bet Roman Catholic. I am one, although bably not run-of–the-mill, though I can find plenty like-minded Catholics to me. I am not offended at your conclusion, just curious to know what you were basing it on. I haven’t been Catholic all tht long, and before I was Catholic I never gave a thought to them. So perhaps I am missing somehting about our massive demographic.

    One can certainly make generalizations about people groups, although our big old Catholic group can be all over the map. Catholics have been tagged: “Here comes everybody”.

    My parents are Mainline Protestant and they, and so many of their peers, are completely reliant and trusting of traditional medicine, so, I have always associated that characteristic with that people group.

    I wonder what it was they said about God that made you think Roman Catholic? Just curious. (I couldn’t stomach reading too far into their site, so I didn’t find what they said).

    By the way, even if Ashley’s parents think this is a personal freedom they have, what this did to their daughter is not an allowed choice for them if they are Catholic — what they have done is explicitly forbidden by the Church. (See: ).

    Posted by Eliza | January 11, 2007, 2:59 pm
  112. Good question, Eliza. Mostly, the way the family writes “sounds” Roman Catholic to me, based on the reading of Roman Catholic writers I’ve done in the past (quite a bit, because in my old fundie days, off and on people would send me books and writings of various kinds, thinking I should convert to Roman Catholicism.) Also, for quite a few years I relied on natural family planning methods in various ways and read all of the books by the authors who teach that method– can’t recall their name now, it’s been a while. Roman Catholics have a certain flavor to their writing when they are talking about spiritual things, or I think they do, just as, for example, Reconstructionists do, Presbyterians, Quakers, Independent Baptists, charismatics, pentecostals, Episcopalians. They all have their own style. 🙂

    But I went and looked at the family’s blog.

    Ashley brings a lot of love to our family and is a bonding factor in our relationship; we can’t imagine life without her. She has a sweet demeanor and often smiles and expresses delight when we visit with her, we think she recognizes us but can’t be sure. She has a younger healthy sister and brother. We constantly feel the desire to visit her room (her favorite place with special lights and colorful displays) or have her with us wanting to be in her aura of positive energy. We’re often huddled around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit. As often as we can we give her position changes and back rubs, sweet talk her, move her to social and engaging places, and manage her entertainment setting (music or TV). In return she inspires abundant love in our hearts, so effortlessly; she is such a blessing in our life!

    In general, the above is not something, for example, that a conservative Christian would write. The reference to the “aura of positive energy” would be considered too New-Age-y/pagan-y for them. And in general, Protestants wouldn’t make reference to a child’s “angelic spirit.” Angels play a different role in the overall scheme of things for Roman Catholics as opposed to Protestants/conservative Christians. My experience is that Roman Catholics, in general, view angels as invisibly present and active in the lives of human beings in a way Protestants/conservative Christians don’t. With some notable exceptions, there is sort of a shying away from talk of angels just in general, or of someone having an angelic spirit that parents would “connect” with.

    The objection that this treatment interferes with nature is one of the most ridiculous objections of all; medicine is all about interfering with nature. Why not let cancer spread and nature takes its course. Why give antibiotics for infections? Even an act as basic as cutting hair or trimming nails is interfering with nature.

    This has a Roman Catholic “natural law”, Thomas Aquinas-y feeling to it, i.e., the Roman Catholic distinctive of evaluating the morality or ethics of an action in terms of motives, not just “doing the right thing,” but having the right reasons for doing it. Also, there is a valuing of reason apparent there, i.e., using reason to evaluate actions in accordance with a specific set of imperatives, as opposed to valuing what is “natural” or “nature.”

    Otoh, now that I’ve re-read it, the first paragraph also sounds kind of Mormon-y, the very flowery language re Ashley’s care reflecting the very high value Mormons IME place on children as a blessing. Mormons usually don’t have any problems talking about “auras of positive energy” or “angelic spirits,” the way conservative Christians would. But the second paragraph doesn’t sound very Mormon-y.

    But you’re right, there are lots and lots of differences among Roman Catholics, people in all different religious groups.


    Posted by womensspace | January 11, 2007, 3:30 pm
  113. Eliza, I looked at your link there. As to this:

    Except when performed for strictly therapeutic medical reasons, directly intended amputations, mutilations, and sterilizations performed on innocent persons are against the moral law (CCC 2297, emphasis added).

    It seems to me that the family might view what they did as being for therapeutic medical reasons– at least I think they could make an argument for that. This is all me just thinking out loud really though!


    Posted by womensspace | January 11, 2007, 3:36 pm
  114. Hello Heart. Long time reader here, first time poster.

    “They have no intention of any kind of getting on with life.”

    What does this mean, exactly?

    Pony, your comments to Blue on ALAS, about “disabled children being the icons of our society” was infuriating and offensive to me. Is that why they wouldn’t let me into public school until I was 8 years old, because I was an icon? Is that why I got the shit beat outta me once I WAS allowed into school–because the other kids loved me so much, being an icon and all?

    Your remarks are extremely ableist, and I can’t figure out why Blue would want to converse with you further.

    And, BTW, prove this: “most of the “officially” disabled, who get some kind of help and services, are men, who got the way they are through risk behaviour.”

    This is incorrect. The largest percentage of “subsidized disabled” are very old women; the people you discussed in your earlier post about the nursing home.

    The media concentrates on men disabled “from risk behavior” because that makes a great “movie of the week” and PEOPLE MAGAZINE melodrama. They are not, however, where the numbers are.

    Having said that, what is “officially” disabled? You mean the kind of person diagnosed as a freak from infancy, like me and Ashley?

    Are you saying the lifelong apartheid I have experienced has been a good thing?

    “Mostly I resent the idea that if one is disabled one gets a pass.”

    What exactly is a “pass”–you mean any form of accommodation is a “pass”? No “special favors”–like no elevators, ramps, what?

    Why are you so hostile to disability politics, Pony?

    Posted by MrSoul | January 11, 2007, 4:41 pm
  115. “…given that the family is responsible for her care and they are the ones who interact with her everyday, they are the most qualified to make the hard choices for all involved, including Ashley.”

    Msssuicidebomber, I see this point and I do realize that Ashley is an enormous responsibility, and that decisions in this case are difficult. If I were Ashley’s mom, I’d want household help, and a lot of it. A housekeeping service so I could devote more time and energy to Ashley. A trained nurse so I could devote some time to myself.

    I cannot afford that, though. My insurance would probably pay for the “Ashley treatment,” and SSI or something would probably help pay for *unpleasant* institutionalization. So what I’d *like* to do, what would be *best* for Ashley (stay home, with no mutilation) and me (get help at home), would be the *least easily attainable* of the options.

    My point: it’s when the good option isn’t available, and you have to start choosing among an array of unattractive alternatives, that reasoning etc. become distorted. I wonder to what extent the problem here is lack of societal support for parents in the situation of Ashley’s … ???

    Posted by profacero | January 11, 2007, 7:46 pm
  116. Profacero said:

    “I wonder to what extent the problem here is lack of societal support for parents in the situation of Ashley’s … ???”

    Profacero, you’ve nailed it.

    The words “societal support” are virtually a contradiction in terms.



    Posted by Mary Sunshine | January 11, 2007, 8:58 pm
  117. Please remember that disabled women are women, too. So much of these discussions go back to a description of disabled people as being passive recipients of care from “mostly women”, leaving disabled women totally invisible in the whole thing. I’ve seen really good feminist disability writing (try Jenny Morris), but feminist writing that approaches disability primarily as a caregiving issue isn’t generally it — it casts women as the victims of the existence of disabled people (including disabled women) and usually proposes horrifically oppressive solutions to the problem of our existence.

    (Bear with me a bit here because I really do have trouble keeping track of all these word-land chained-together ideas people are throwing around in the air.)

    I can see that I’m being stereotyped into oblivion here, as basically a menace to society by the very existence of my particular brand of cognitive impairments. The fact that there are solutions to the problem of walking into the street beyond forbidding me to go out my door, seems to be eluding people. So does the fact that the dangers my brain structure pose to me and others around me, are only highlighted as special and scary because of ableist values themselves — the dangers posed by a typical brain (and there are too many to count) are normal and therefore a person is not deemed heartless and irresponsible for possessing such a brain even if the working of their brain kills someone. The risks of the non-disabled brain are considered normal, and the risks of disabled people’s brains are considered Big Scary Monsters or something.

    I find the characterization of large adult autistic men as inherently dangerous to be incredibly offensive by the way. Did you know that when autistic people are killed by our caregivers, often our height and weight (oh horrors! big autistic people!) are the only thing that make it into the newspaper stories about us? I know because I’ve been trying to come up with a memorial in which I wanted to include things liked by each autistic person, and very few articles include a single personality trait (unless “violent”) or like or dislike on our parts.

    It’s telling and disturbing how many people use autism or other cognitive impairment as as synonym for some kind of inhuman monster who will destroy society if allowed to run around loose. The amount of damage we have done to anyone by existing pales in comparison to the amount of damage done to us in the name of protecting everyone else from our existence, but again…

    This is a lot more fragmented than I expected to write because there’s still this problem of words, but you get my drift. Anyone who thinks that I don’t care what affect I have on other people isn’t reading me properly. Maybe you have to have basic rights and freedoms restricted before you understand how important they are and how wanting those rights and freedoms is not the same as wanting free reign to do whatever you want. I’m sure there’s some analogy to how women in general have been treated in our fight for various liberties that men have always had — go find it and apply it.

    Posted by Ballastexistenz | January 12, 2007, 2:39 am
  118. As this is a woman-centered space, I would like to ask that all of you (particularly anyone male or with a male-sounding username) who love to dump on Pony would jump back. Pony has demonstrated her commitment to women over and over, here and elsewhere. If you read something of hers that sounds “-ist” to you, I would suggest you assume you have misread her. Given that she has talked openly about her struggles with disability and her experience as a woman of the Metis, it seems the least you could do.

    Posted by Amy's Brain Today | January 12, 2007, 3:47 am
  119. Profacero, increased social support would definitely make life easier on Ashley’s parents and siblings, and might allow her to live at home as a full-sized adult. However, it wouldn’t address most of the primary issues that the “Ashley treatment” was designed to help.

    Ashley would still be at very high risk of developing cancer or painful fibrous growths in her breasts and uterus (bad genetics, and the early puberty is a red flag, too). For a woman as severely retarded as Ashley, the routine Pap smears that would have been critical to keeping her healthy would have had to be done under general anesthesia (she can’t understand or cooperate, but she can wave her arms and legs enough to make an exam impossible while she’s conscious). For Ashley, every Pap smear would have been almost as unpleasant as the surgery, and over time the risk to her life would be much greater.

    Additional help would make moving an adult-sized Ashley easier, but she would still be at a greatly increased risk of bedsores–even frequent movement won’t prevent them in bedridden patients with an adult weight. Bedsores can be fatal, if they get infected. An adult-sized Ashley would also be deprived of being picked up and carried, which is apparently one of her favorite things.

    The “Ashley treatment” seems to be more about easing her biological/medical problems than making up for lack of social support.

    Posted by Mary | January 12, 2007, 3:58 am
  120. I don’t think I actually posted anything offensive. Is there a reason my attempt to defend my character has disappeared?

    Posted by Ballastexistenz | January 12, 2007, 4:06 am
  121. I attempted to post once before that there are plenty of ways to handle the going-out-into-the-street-is-dangerous problem without resorting to prohibiting a person from leaving the house, and that of course I am not the selfish menace to society that I am being portrayed as, and that I am seeing over and over as worrying characterizations of disabled people in this thread.

    I also attempted to point out that many feminist characterizations of disability fall short because they depict women-as-a-whole (which excludes disabled women in most analyses — and to be clear, I’m a disabled women) as beleaguered caregivers and victims of the existence of disabled people.

    And that portraying autistic people (and large autistic people in particular) as inherent menaces to society is offensive and commonly done in some pretty nasty circumstances.

    And that there is ableism involved in assuming that the dangers of having a typical brain structure are just the way things are, yet the dangers of having atypical brain structures are evil monster horrors unleashed upon society.

    I am not sure why these comments have evaporated, but I believe them to be relevant and on-topic, and question why it is that someone can claim that I don’t care if people get killed (a pretty serious accusation), and depict autistic adults as essentially destructive menaces, and not get their comment deleted, but my response in defense has for unknown reasons been deleted.

    Posted by Ballastexistenz | January 12, 2007, 4:11 am
  122. Hey, Ballastexistenz, I’m stringently moderating this thread, and that’s why your posts went into the moderation queue. Any post with “Ballastexistenz” in it I wanted to moderate so as to spam posts which were off topic, over the top, more offensive than some of the posts here already have been, and so on. Of course, that means *your* posts ended up moderated too! I am sorry. I am trying to run a tight ship here, as to moderation, and it has been quite a struggle!

    I haven’t read your posts carefully yet but wanted to quickly explain why your comments were in moderation for a while. I’ve been away from the commuter on my commute home and we are in the middle of a snowstorm, so my commutes are twice as long!



    Posted by womensspace | January 12, 2007, 4:19 am
  123. Ohhh. I thought I saw it appear then disappear before, which was why I got confused. Sorry for the fuss.

    Posted by Ballastexistenz | January 12, 2007, 4:21 am
  124. P.S. Ballastexistenz, one more thing, I am so glad you posted. I have really enjoyed reading your writings.

    And Amy, thanks for standing up for pony, I’m sorry I dilly-dallied about that, pony. I wasn’t sure whether you wanted to respond, wasn’t sure whether I should have approved that comment, and so on. In general, I am trying to approve comments by disabled people because it would seem really wrong not to in this thread. I would remind everyone that, as Amy said, this is Women’s Space, most of us here suffer our own multiple oppressions of various kinds, and I want it to be safe space for all of us.


    Posted by womensspace | January 12, 2007, 4:23 am
  125. I find the characterization of large adult autistic men as inherently dangerous to be incredibly offensive by the way. Did you know that when autistic people are killed by our caregivers, often our height and weight (oh horrors! big autistic people!) are the only thing that make it into the newspaper stories about us?

    Yes, I felt that way too. My mind immediately went to the situation of mothers of non-disabled teenage sons. Just yesterday I read a newspaper account of a young non-disabled man who had gone to jail for attacking his mother. His stepdad had testified as a witness. Two days after he was released from jail after serving 8 months, he and a friend went to the stepdad’s house and beat him to death. That’s severe, but there are many less severe, but still very violent, crimes young men commit against their parents and others who are in fact charged with their care because they are minors, so why demonize autistic people? I’m not meaning to pick on Rich here– this is a learning process for all of us, we all need to work to root out our own ableist thinking and impulses, those of us who are non-disabled.

    The fact that there are solutions to the problem of walking into the street beyond forbidding me to go out my door, seems to be eluding people. So does the fact that the dangers my brain structure pose to me and others around me, are only highlighted as special and scary because of ableist values themselves — the dangers posed by a typical brain (and there are too many to count) are normal and therefore a person is not deemed heartless and irresponsible for possessing such a brain even if the working of their brain kills someone.

    Again– exactly. Non-disabled people are the default and need to move over and make way for all the different ways there are for people to think, live and be. We need to be *decentered* and to give up these ideas that whatever we find inconvenient is pathological or evil or whatever.

    I love your advice that in trying to think of how to address these issues, we remember things which have happened to us at the hands of men, those of us who are not disabled, how we reacted, how we dealt with it and apply it to the situation of the disabled. I also appreciate your pointing out the way ableist thinking makes some sort of distinction between “women” and the “disabled,” as though many women are not disabled. Most of us have a deep understanding of this in other contexts, i.e., the way racists will refer to women *and* people of color, as though people of color don’t include women.

    Anyway, no sweat re your concerns about being moderated! I know what you mean. Nothing like writing a comment in a new venue, spending good time and energy, hitting “click” and then your comment gets moderated. It has certainly happened to me, and more than once, and very often, in places it should *never* have happened!

    Anyway, thanks again for your good comments.


    Posted by womensspace | January 12, 2007, 4:46 am
  126. Mary, not to pick on you, I don’t mean to, but many of the issues you raise have already been thoroughly discussed in this thread. I would like to ask anybody who comments here not to comment until they have *carefully* read every post to the thread. Those new to the discussion who raise issues we have already discussed at length and especially which are contrary to the consensus and woman-centeredness of this thread will be stringently moderated.

    Ashley would still be at very high risk of developing cancer or painful fibrous growths in her breasts and uterus (bad genetics, and the early puberty is a red flag, too).

    We have discussed these issues at length here. There is no basis for removing healthy body parts, without Ashleys’ consent, to prevent all of the diseases you mention. The consensus of this thread is that it is ableist, misogynist, and violating to cut women up, and medicate them, because somewhere down the line, they might get diseases, when they cannot give consent or not in a way which we are able to understand (and the last few words are important).

    For a woman as severely retarded as Ashley

    We have also discussed this at length. We don’t know how severely retarded she is. Doctors are just guessing. There is no way for them to know.

    , the routine Pap smears that would have been critical to keeping her healthy would have had to be done under general anesthesia (she can’t understand or cooperate, but she can wave her arms and legs enough to make an exam impossible while she’s conscious).

    We have also discussed, here, some of us, our belief that pap smears are over-prescribed. Someone protected from sexual assault and not sexually active would not, in my opinion, ever need a pap smear. That’s extreme; nevertheless, that’s what I believe. I believe that pap smears, in fact, *cause* a lot of difficulty for women. Those of us who are sexually active may need to have them sometimes, like when we have unprotected sex, but a woman who is not sexually active or has not been sexually abused? I don’t think so. My opinion.

    Additional help would make moving an adult-sized Ashley easier, but she would still be at a greatly increased risk of bedsores–even frequent movement won’t prevent them in bedridden patients with an adult weight.

    Bedsores can be avoided with careful and patient care, of the type that Ashley’s parents say they want to provide.

    Ashley would also be deprived of being picked up and carried, which is apparently one of her favorite things.

    Who knows what her favorite things will be when she is adult weight and height? See, this is what troubles and so disturbs me. I noticed that on the family’s blog, they say she loves a certain singer’s songs (and they call the singer her “boyfriend,” which bugs the shit out of me, really disturbing in light of other things they wrote about her, how objectifying, heterosexist, and just disrespectful and yucky is it possible to even be). To me, the fact that Ashley enjoys certain music indicates a level of understanding, comprehension, sensitivity that the family isn’t getting the significance of. Blue said Ashley likely has many more memories than a 3-month old. (And again, I think describing her as being at the level of a 3-month old is just a guess, and also, that the way the discussions around that have gone have severely underestimated 3-month olds!). In fact, Ashley imo has the right to live and grow into the person she will grow into. As she got older and being carried around began to be more difficult, it *would not longer have been one of her favorite things*. You know? It wouldn’t be fun any more. Three-month-olds have fun. Ashley thinks certain music is fun. In time, she’d find other things she thought were fun. Attentive caregivers would observe along the way all sorts of things, in all likelihood, that Ashley liked as she grew and got older.

    But they won’t now. Because they’ve taken all that away from her without her consent. Which is imo wrong.

    I mean honestly. ALL of us liked to be carried around when we were small, didn’t we? If we had trustworthy people who carried us around? Then we got too big and those days were over, oh well, moving on now. Then we liked other things. Why would this not be true for Ashley?

    Again, just generally to all reading, if you are going to post here, *please read every single post to the thread carefully*. If I can see that you haven’t, I will not approve your comments.


    Posted by womensspace | January 12, 2007, 4:59 am
  127. Because it was brought up, here’s the link to what I said about Amps’ association with porn. Note that no jokes were made by me:

    And here’s the discussion between Pony and I that Mr. Soul references, also at Alas:

    That latter is my critique of Andrea Dworkin’s writing on disability, but the discussion between Pony and I very much delves into my character and that of disabled people, generally.

    Posted by Blue | January 12, 2007, 5:36 am
  128. “Ashley would still be at very high risk of developing cancer or painful fibrous growths in her breasts and uterus (bad genetics, and the early puberty is a red flag, too).”

    You don’t know that she would develop cancer, at any higher rate than any female. I haven’t read that she has the BCRA 1 or 2 gene; have you? “Family history of breast cancer” means nothing, as it was stated. And the BCRA 1 & 2 does not particularly affect the uterus. If she had that gene, elective preventive treatment involves oophorectomy not hysterectomy.

    Fibrous growths; a very large percentage of women have fibroids and fibrositic breast tissue (made worse by the way by hormone therapy) but they are not so painful ones breast need be removed. A very large number of women manage to live their lives with fibrostic breasts. Fibroids are rarely ‘painful’, but that can be controlled much less invasively with occasional pain medication than surgery. Nor are fibroids reason to have a hysterectomy, ever. Early puberty? Puberty at 10 is quite common now. Something to do with all the xenoestrogens in the environment, our water, milk and food, so if it’s a red flag for anything, it would be that.

    As for the pap smears: if they must be done, they could be done under mild anaesthetic, such as valium, but Ashley could also have had the cervical cancer vaccination. She could also have the blood tests that are available and being improved.

    Posted by Pony | January 12, 2007, 5:58 am
  129. I’m not going to click on those links. They go to a porn pusher’s site.

    The joke by you was haha all those porn hounds would be coming there hoping to find disabled girl porn, and finding you, a feminist. (?!)

    Posted by Pony | January 12, 2007, 6:00 am
  130. Alas a Blog has hidden pornography advertised. Each hit to Alas is equivalent to a hit on the hidden porn links. The hits are used to rank the porn that is advertised on Alas, in google listings. The more hits the higher in the google lists, and the higher in the google lists, the more likelihood pornsturbators looking for women-hating racist porn will hit on that link. Ergo: Alas’ hidden porn links have increased porn use and sales.

    Posted by Pony | January 12, 2007, 6:14 am
  131. I missed some posts up thread.

    “This is incorrect. The largest percentage of “subsidized disabled” are very old women; the people you discussed in your earlier post about the nursing home.”

    This isn’t disability. This is ageing, although much about disability is similar to being elderly. However with proper care, rehabilitation and modifications, most persons with disability could live better, productive lives. People who are elderly could live better if we had a more humane idea of ageing (which you seem to lack?) but elderly should not likely be expected to work. I am not elderly. I’m 64, and I work.

    There are studies, about 10 years, old the ones I read, which show the highest percentage of disabled are men, between 18-35 (give or take a few years) who got there from risk behaviour. Certainly there are men who have chronic health conditions which have disabled them, or were born with some disabling condition. I think a disproportionate amount of rehab money goes into what I call the “wheelchair athlete” disabilities. Capice?

    The fight to get women’s illnesses considered disability has been long and bloody and isn’t over yet. One example is chronic fatigue syndrome, another, fibromyalgia, another multiple sclerosis, which was ignored too for years, and women who have it overwhelmingly in majority, told it was in their minds. All the musculoskelatal conditions, even 10 years ago, were not considered disabilities, and that was/is primarily because they occur mostly in women. Women were told they were drama queens, just wanted attention, were hysterical, had too mush estrogen, and castration (no one of course used that word) would cure them, and if it didn’t, well back to the beginning of this sentence.

    I am not arguing with you that persons with disabilities must be viewed differently by society, must be included. Whatever it takes.

    I am a disability advocate. Just like some feminists disagree on what is feminism I would say, I’m a radical disability advocate, in that I expect persons with disability who like to use it to get by just fucking stop it, because that’s ableist. It’s like reverse racism, as I said in another post. I don’t like people who use their race as a get out of jail card either. And there are those who do.

    I’m disabled by the way, or have disabilities. I have said it on boards, but almost no one in my life knows it, because I won’t use it. I collect no disability income, but live on what I earn, and that includes, as I have said here and elsewhere, what I glean from dumpsters. When they tell me about all the forms I could fill out to get this and that, and have them own my soul, I think “fuck you”. I really don’t need toilet paper, you know?

    I do that for my own pride, but also, so disabled persons who have no choice, can get what little there is from a society that does not see us as persons.

    Do you know what was the worst thing that happened to native people in the north? The welfare agent stepping off the bushplane. The slide into dependence and loss of culture was bought. Do you know why so many are homeless? They won’t play the welfare game. They’d rather sleep in a box and panhandle than play the government game. It’s not like it’s a wonderful choice, but I think it’s the better one.

    Posted by Pony | January 12, 2007, 7:26 am
  132. Pony:
    The joke by you was haha all those porn hounds would be coming there hoping to find disabled girl porn, and finding you, a feminist. (?!)

    Every radical feminist who has been google bombing or playing on the hits they get because of Brittany’s pantielessness, including Heart, has been expressing a similar emotion to my amusement with pornhounds getting something other than what they seek.

    I get many hits each day for some version of disability porn, and incidentally, before I mesed up my blogroll last week, I usually got a hit or two each day for porn because of my link to your site and your “Ponygirl” moniker. It was fine by me. They don’t get what they look for, but just possibly something makes a positive impression. That philosophy/black humor is no different than the one Heart has been more actively cultivating by using words and phrases that misdirect pornhounds here.

    For those worrying about supporting porn, okay, I get that.

    Pony, your last post is incredibly ableist — disability advocate or not. You have every right to your personal experiences as a disabled woman being validated, but to use your decisions and the luxury you have to make those decisions as justification to vilify other disabled people is really beyond the pale. Or to put it differently, to use the bitter choices you or other people make to vilify those who choose differently in a system where no choice is a good one is rude and patronizing. Some of us who rely on electricity to, um, breathe or something, certainly couldn’t choose homelessness as the “better” option.

    Posted by Blue | January 12, 2007, 7:48 am
  133. I simply haven’t said what you read in there Blue. So since I can’t seem to get a decent reading with you, I’ll just stop. I’m not interested in forcing you to my viewpoint.

    This is an example of what you do that is dishonest, this throwing in this idea of needing electricity to breathe, as if I made any reference to anything like that.

    I won’t play.

    Posted by Pony | January 12, 2007, 7:59 am
  134. “I usually got a hit or two each day for porn because of my link to your site and your “Ponygirl” moniker.”

    I don’t have a site.

    Posted by Pony | January 12, 2007, 8:01 am
  135. Pony said: I’m disabled by the way, or have disabilities. I have said it on boards, but almost no one in my life knows it, because I won’t use it. I collect no disability income, but live on what I earn, and that includes, as I have said here and elsewhere, what I glean from dumpsters. When they tell me about all the forms I could fill out to get this and that, and have them own my soul, I think “fuck you”. I really don’t need toilet paper, you know?

    I do that for my own pride, but also, so disabled persons who have no choice, can get what little there is from a society that does not see us as persons.

    Do you know what was the worst thing that happened to native people in the north? The welfare agent stepping off the bushplane. The slide into dependence and loss of culture was bought. Do you know why so many are homeless? They won’t play the welfare game. They’d rather sleep in a box and panhandle than play the government game. It’s not like it’s a wonderful choice, but I think it’s the better one.

    If you don’t tell people that you’re disabled and they can’t tell by looking at you, I know that can be both a luxury and a curse, depending on the circumstance. A curse because, as you say, it can be harder to get needs met or have your needs seen as legitimate. But being able to pass because you choose to sometimes is also a luxury. And offers you a radically different experience from visibly disabled people. That explains a lot about our contentious exchange.

    You talk about not selling your soul for assistance as if it were a virtue. I certainly believe being able to handle it on your own is a good thing, but it’s not an absolute virtue. Certainly anyone who can manage without government assistance should, to allow the resources to go where they’re most needed.

    You mention welfare and people who choose homelessness out of pride. That is a bitter bitter choice. I simply point out that there are levels of pride not everyone can live with and homelessness in itself is likewise, not a virtue. It is a tragedy. To say it is the “better choice” to not accept government aid is a limite assessment of the situation.

    If you are not the feminist Mighty Ponygirl, then I am the one confused about identities and I apologize.

    Posted by Blue | January 12, 2007, 9:02 am
  136. I’m not very good at knowing the names of things, but I was just advised that the style of argument you are using here is called “strawman”. You make up things that I must then defend myself from.

    Won’t play.

    Posted by Pony | January 12, 2007, 9:33 am
  137. I’m unclear what I am making up. You said you chose to not fill out forms for something, presumably a disability income, and choose to dumpster dive and go toilet paperless or whatever. You mentioned people choosing homelessness over welfare.

    I am saying not everyone can make such drastic choices. Some people have wheelchairs or machines that need electricity. Homelessness certainly wouldn’t be an option if your very life required a plugin, and dumpsters are hard to climb into when you are paralyzed, for example. Such choices, thus, are not simply a virtue to be proud of, but can be a luxury.

    Posted by Blue | January 12, 2007, 9:51 am
  138. I don’t dumpster ‘dive’. You assumed that.

    I don’t climb into dumpsters. You assumed that.

    I haven’t said what I do is a virtue or implied it. You assumed that.

    What it is, is a statement against a society that makes us sign that we are useless before they will help us, makes us jump through demeaning hoops, and then imposes a 1950s idea of disability on us. (Not in a wheelchair or needing an assistive breathing device? Not disabled). It’s the choice of many (carried out in different ways) who won’t go into unsafe housing, or hostels where people are beaten and raped, or go into mental hospitals or take toxic brain damaging drugs unless they are forced

    They’ve chosen the best of bad choices as I said.

    The majority of women who are disabled or have disabilities are not visibly disabled ie) they don’t have a device or apparatus or machine.

    Posted by Pony | January 12, 2007, 3:11 pm
  139. Hi Pony et al.,

    I’m on ODSP in Ontario. Ontario Disability Support Program.

    Pony, I know exactly what you are talking about. I hate being on ODSP.

    At the point that I was admitted to ODSP, I was unable to continue working in the market economy as I had until then. My survival options were severely limited.

    My condition makes it impossible for me to make any kind of ongoing or even short-term committment to any kind of participation with other people, employment related or otherwise. My best efforts in that respect are required to be to keep taking medication ( 7 kinds at last count …) several times a day, to make and keep doctors’ appointments, to keep myself supplied with those meds, and to keep some reasonable kind of nourishment going into my body. Cleanliness is nice when it can happen. I refuse to have “home help”. My life is already invaded from so many different directions that I would find that intolerable.

    It’s simply not possible for me to extend myself beyond the limits of what I now manage. So, I do what I have to do and say what I have to say to keep things from getting any *worse* with respect to the tenuous hold that I maintain on this planet.

    I am comfortably well adapted by now to a reclusive existence. It is my stable centre, and I have no desire to change that. In fact, I protect it zealously. I know that I will not see any improvement in the condition of the Female on this planet before I finally (with much relief!) make my exit. But the occasional shout-out to other female loyalists on these web boards is something that I can do, and I love to read all the comments here.


    Posted by Mary Sunshine | January 12, 2007, 4:33 pm
  140. Mary “My life is already invaded from so many different directions that I would find that intolerable.”

    This is so true and so sickening and sad. I rail against this. Why I ‘glean’ from garbage and dumpsters. But when you cannot manage you must do as you must. I am trying to hold out as long as possible. I know I won’t always be able to do that. “Rage rage,,,” etc. I know most of the disabled isolate themselves. I do. I have to, in order to deal with the pain and crippling it causes. No-one sees me unless I can manage to walk a bit, to a friend’s car or something like that. Rarely I take a bus. What a nightmare, that puts me into hell for days.

    Thank God-ess for the internet eh? For so many things, communion with other people, information, stimulation, keeping connected. Now, with you Mary. Thanks for saying.

    Posted by Pony | January 12, 2007, 5:55 pm
  141. Mary xxxooo

    Posted by Pony | January 12, 2007, 5:57 pm
  142. Womanspace, Pony, I’m sorry, but I think you’re the ones who are dismissing Ashley’s special needs and interests in pursuit of an agenda that will benefit a lot of other people, but not her.

    I posted because the discussion seemed to be overlooking just about everything that is known about Ashley’s biological condition, in favor of making generalized statements about disabled women in general. There’s nothing wrong with supporting rights for disabled women, but not if it specifically denies the Ashleys of this world the right to treatment that can benefit them.

    I did read the thread before commenting, and what I saw was commentator after commentator who insisted that Ashley’s surgeries were performed for just about any other reason than those listed by her parents and doctors. No one thinks that it is appropriate to perform a hysterectomy on a retarded woman for the sole purpose of “desexualizing” her, least of all Ashley’s parents. Performing one to prevent the risk to her life of repeated anesthesia at best, and cancer at worst, is a very different ethical question. You may or may not agree with her parents’ answer to it, but it shows a fundamental lack of respect for Ashley’s parents as caregivers and as people not to base your criticisms on their actual reasoning.

    Womanspace has very cavalierly dismissed Ashley’s cancer risk out of hand, by offering the dubious claims that women who are not sexually active can’t get uterine cancer, and that regular Pap smears are not necessary for detecting it while it’s still treatable, anyway. That’s wrong, on both counts. HPV may increase the risk of cancer, but it’s quite possible to develop cancer without it when you have Ashley’s bad genetics and early puberty. And exactly how else, besides Pap smears, would anyone have been able to know that Ashley had developed cancer? She can’t tell anyone that something’s going wrong.

    Pony, fibroids are in fact a very common reason to have a hysterectomy. When they grow large enough to cause uncontrolled bleeding, or are placed where they cause severe pain, there’s nothing else that can be done. Voice of experience, here. Also, if you’d read Ashley’s parents’ blog, you’d have found out that Ashley started going through puberty at the age of six, which is definitely NOT even close to normal.

    Bedsores are a constant battle for bedridden adults, and even diligent care can’t prevent them entirely. Christopher Reeve had both excellent care and the ability to tell his caregivers what was wrong, and he still died from them after only nine years of being bedridden. An adult-sized Ashley would have been at even higher risk.

    Ashley can’t give consent to any treatment, and she’ll never be able to. That’s because most of her brain is missing. That’s not a guess, as it would have been thirty years ago, it’s a fact. The gaping hole where her brain ought to be can be seen on an MRI. Ashley’s doctors may not know why her brain failed to develop, or how to fix it, but they do know for certain that she’s not a Helen Keller who just lacks the means to communicate. Ashley is a permanent infant, and her parents, at least, seem to be accepting that and doing what they can to make a lifetime of infancy as pleasant as possible for her.

    Perhaps it might be possible to discuss whether the “Ashley treatment” has the potential to improve her quality of life, given HER particular problems? It would, I expect, be a more interesting and relevant discussion than endlessly denying that her problems have been properly diagnosed, or listing other disabilities with other sets of problems for which such treatment would not be appropriate.

    With respect.

    Posted by Mary | January 12, 2007, 5:57 pm
  143. Heart, thank you for explaining how you arrived at your hypothesis,. makes sense to me. Yes, I thought “Mormon”, too, when she spoke of “angelic spirit”. But yes, could be Catholic too, and true what you said about angels. Individual Guardian Angels and other angels an integral part of our faith.

    Posted by Eliza | January 12, 2007, 7:07 pm
  144. Yes, fibroids are a very common but medically unnecessary reason for hysterectomy, done by unscrupulous, misogynistic and profit motivated gynecologists to women who not been given full accurate information about their options, and who are nudged into these procedures by scare mongering and patronizing, who also frequently and unnecessarily while we’re in there”, castrate her too. Preventively of course. Know any men who’ve been castrated preventively? 600,000 women are hysterectomized in NA annually, most of them for reason other than cancer, which would be the ONLY reason that one should consider it.

    Since you repeatedly mention Ashley’s *genetics* (somehow this has morphed from ‘family history’) tell us, exactly, what they are.

    Posted by Pony | January 12, 2007, 7:59 pm
  145. OK, so you don’t dive in dumpsters. You “glean” from them. You talked about choosing not to fill out forms and being proud you managed to do for yourself instead of “sell you soul.” You also said some homeless folks made the “better” choice rather than using welfare. That is making a virtue of certain actions others do not have the choice to make. I’m happy for you it works as well as it does, but you have been combining that with unending criticism of “official” disabled and wallowers, etc. So you have been creating these personal criteria for who seems deserving and not, it seems to me. That’s what I’ve been addressing because it pisses me off.

    And why do you keep using what are your perceptions of women’s disability experiences to isolate or alienate those who do not fit your descriptors, who DO use machines, who DO become designated officially disabled and DO have to jump through the hoops to maintain that status so they can afford to live? Why label one sort of disability experience as “women’s experience” and therefore draw a line for those of us who have never fit it? So what to your claim that the majority of women do not use machines or apparatuses? Why the need to make those distinctions instead of just generally talking about the wide varieties of women’s experiences and validating them all? What does that win you, exactly?

    Posted by Blue | January 12, 2007, 8:14 pm
  146. What you have been *addressing*gets its meaning in your own mind Blue, made of your own judgements and anger that did not originate with me or my comments.

    This is my final response to your distortions.

    Posted by Pony | January 12, 2007, 8:53 pm
  147. Responses in no particular order, sorry, there’s just so much here, but I wanted to say a few things. I’ve read through all of the recent posts.

    Those who have had their culture taken from them by the state (including women), whose people have struggled against assimilation and colonization, often have a very different view of welfare and “social services” than those whose experiences have been different, i.e., those who enjoy race, sex, or class privilege both in the U.S. and Canada. I think that might be where you and pony are missing each other, blue, at least in part. Pony is Métis. Her people were colonized, their culture destroyed by the same Nation-State that now says, “Here, take welfare, fill out these forms, we will take care of you.” Not to speak in any way for pony or for anyone, out of my own knowledge only, we know how the Nation-State takes care of aboriginal/indigenous people! How it takes care of black people, people of color. And how it takes care of women! That is compounded when we are talking about women of color who are ALSO disabled because they are going to experience sexist racialized ableism at the hands of the Nation State. When pony talks about gleaning from dumpsters, she is saying she would a million times rather do *that* than take handouts from a colonizing, imperialistic, racist culture which has robbed her and her women of their birthrights, their heritage, as she wrote about yesterday in the missing East Side Vancouver women thread. To call this dumpster “diving” erases an important part of the reason for doing it, which is to say, “Fuck YOU, nation state, imperialist, colonizer! Get out of my face. I’m not coming to you for ANYTHING.” The Nation-State is always John Wayne/Mother Teresa. First it kills you, rapes you, lays you waste, then it comes along afterwards and says it will heal you, but what is done bears no relationship to healing, even for those who have no choice but to take what is offered.

    What I hear pony saying is, she refuses to deal with the Nation-State on its own terms and feels deep frustration over those who believe it means anyone any good, but least of all a 64-year-old disabled aboriginal woman. She would rather glean from the dumpster. “Dumpster diving” is often a term of derision, in the U.S. anyway, applied to white people who are poor, who are called “white trash”, or who are working class and who are viewed as “too cheap” to buy things and so they “dumpster dive.” It has unflattering connotations which are the precise opposite, in other words, of what pony is talking about when she says she’d do anything but deal with the Nation State, and will take that road so long as she can, even though she sees all sorts of people who trust the Nation-State despite its treatment of women, people of color and the disabled. The trust is misplaced, in other words.

    You’re right, disabled people who NEED machines, apparatuses, special kinds of help cannot take the same road. I don’t get it that pony is saying they should. I get it that she’s saying there are many people like her who, if they would organize and come together in solidarity, might be able to challenge the way things are, but this will not happen so long as the state/medicine/psychology are revered as or looked to as the all-knowing experts. Aboriginal people, indigenous people, people of color, poor mothers, fat women, women, period, we all know that the state/medicine/psychology are not our friend. Which is not to say that sometimes we don’t all have to make use of the services they provide, we do.

    Now that pony is talking about all of this, I’m remembering my friend I talked about earlier, putting 2 and 2 together. I called her diagnoses “wastebasket diagnoses,” not because I don’t think she wasn’t disabled, I think she was, but because as pony alluded to, diseases common to women are not taken seriously, and get diagnosed in certain “wastebasket” ways designed to dismiss women’s claims, or just because, again, there is no great interest in real research designed to help disabled women. My friend took the same route pony did, now that I’m remembering. She refused to go to Social Security because she knew she would be subjected to endless very painful and invasive tests including at the hands of Social Security Administration-approved doctors, and in the end, because so little is known about fibromyalgia and similar diseases/syndromes, they would rule that she was not disabled at all. Meaning she would have been worse off than when she started for all the tests, she still can’t work, can’t get assistance, and on top of that she’s told she isn’t really sick. She didn’t want all of those records being accumulated and kept forever amen by government officials to be used, not FOR her, but AGAINST her later down the line somehow, which IS how these records get used against women, people of color, indigenous/aboriginal people, poor people, all of the time.

    I think she is speaking out of her experiences, pony, I mean, and you are speaking out of yours, blue, but taking what she says more personally, as though she is judging what you and others situated like you have done to take care of yourselves, when I don’t think that was her intention. But the responses have become heated now and then things become difficult and intense.

    This was consciousness raising for me in that I realized I’d also judged my friend (who was on the Religious Right with me, still is, and shunned me 12 years ago when everybody else did) in the way she dealt with her illness because I wasn’t conscious of these issues back then and haven’t thought about this part of my friend’s life for a long time. It was quite an A-ha moment, really, what you wrote, pony. THAT’s what she was doing! Now I feel as though I sucked for being so ableist about it, and I did suck.

    This is really long, I’m going to comment and then make one more comment.

    pony, blue, if I’ve mischaracterized what you’ve said or misunderstood, please correct me, tell me where I’m off, I have not meant to, please believe me!


    Posted by womensspace | January 12, 2007, 8:58 pm
  148. Re porn and Alas. Very true that I have chortled over pornhounds coming here looking for Britney shots just as you, blue, chortled in the same way. The difference is, there is no porn here at Women’s Space, but there is at Alas. I know you know this, blue, I am mostly saying this so that those reading, lurking, who don’t know what all that was about, know what we’re talking about.

    Mightyponygirl is indeed a different poster from pony– I’ve encountered both of them online in separate venues and places.

    Mary, I think I’ve already commented on most of what you raise in your most recent comment, so just a few things:

    but it shows a fundamental lack of respect for Ashley’s parents as caregivers and as people not to base your criticisms on their actual reasoning.

    See, this is where we’re missing each other. We are talking here about Ashley– not about her caregivers. Our concern is Ashley. It isn’t that we aren’t concerned about caregivers, only that caregivers are a separate issue and that the needs and difficulties of caregivers should not come before the needs and difficulties of the disabled.

    Womanspace has very cavalierly dismissed Ashley’s cancer risk out of hand, by offering the dubious claims that women who are not sexually active can’t get uterine cancer

    This has not ever been said here, by me or by anyone. I said I didn’t think pap smears were necessary for women who are not sexually active or haven’t been sexually abused.

    and that regular Pap smears are not necessary for detecting it while it’s still treatable, anyway

    Pap smears rarely detect uterine cancer. They detect cervical cancer. There are no routine tests for uterine or endometrial cancer; testing begins with symptoms like unusual bleeding or unusual discharge. One huge cause of both cancers is hormone treatments, like hormone replacement therapies, which makes me wonder if that didn’t factor into the hysterectomy. Bombarding Ashley’s body with hormones raises her risk for uterine and endometrial cancer, so I suppose the logic could have been, since we’re bombarding her with hormones to stop her growth, let’s remove her breasts and uterus in case we accidentally cause her to have cancers there. 😦


    Posted by womensspace | January 12, 2007, 9:13 pm
  149. One more! Eliza, thanks, I’m glad you feel my hunches made sense.


    Posted by womensspace | January 12, 2007, 9:14 pm
  150. Eloquent said and true. But, as an afterthought, is Mary Sunshine aboriginal? 🙂

    My feelings come as much from being a radical feminist as anything, Heart, and the lessons whichcame not only from both of those, but from being at the knee of a mother who said, to the men standing at the door with the Christmas hamper (because my father had been in the reserve forces) “No. I do not take charity. Six children and a mother who earned $200 a month. We ate well enough, actually Heart, because the one Black man who lived near us, a very old man who had often gone fishing with my father, brought us fish. My mother smiled when she accepted them from him. He gave me oranges whenever he saw me. I’m sniffling now remembering him and his wife and the so obvious love between them, and his lonliness when she died. They were both very old, very regal, and very warm to a little girl with no dad anymore. Especially where it comes with something expected in return which sticks in my gorge, I will say no. Obviously, I have the ‘ability’ to do this, and it’s part of me. I’ve never put this on anyone else. Never.

    But thanks dear Heart, for saying what I mean. You really did and do. You know when we talk about invisible disabilities, well, this is one of my others, I have three, two physical and this, aphasia.

    Posted by Pony | January 12, 2007, 9:19 pm
  151. Well, not to bore you, pony, but you should re-read that comment because I fixed it quite a bit including in the ways you are suggesting.

    And yeah, you definitely have the fierce thing going on, which is how I read your resistance to help, I have that too. I think we have to be fierce to survive in this world. Which is to fault anybody for ANYTHING they do to survive. It’s the system that is broken. Not women.


    Posted by womensspace | January 12, 2007, 9:27 pm
  152. Oh and yes, there are people here who dumpster “dive”. I physically can’t but also find the idea icky. Fortunately, the dumpsters are never emptied as often as they should be, and people here seem to think to leave useable things beside the dumpster, or against the back of highrises or back fences, sometimes with a sign saying “help yourself”. I have virtually furnished my home, and that’s where I get my clothes too. Sometimes, food, but of course I’m careful.

    I don’t interfere with the dumpster “divers” who I meet frequently. They know me, we say hello, sometimes they hand me something. Anyway, they are after different things than I am. It’s way too far for me to walk to the bottle depot, and I wouldn’t take that source of income from then anyway. Yes I know what they use it for. C’est la vie. So many of us have “disabilities”, and they are doing the best they can with theirs.

    Posted by Pony | January 12, 2007, 9:30 pm
  153. Oh and pps. They won’t and can’t take welfare, or social services. They also won’t go into shelters or hostels unless it is around 25 below zero. It’s too dangerous, dirty, they risk rape, theft of their few positions, lice, getting beaten, forced to attend religious services by the churches that run the places. They will go for meals, or clothing, or to shower once in a while. They live in the river valley, ravines and bush. Most of them now, have bikes. That was the result (more or less) from a wonderful city counsellor who started that initive with old, lost and found, and police seized stolen bikes. Others have made fantastic conveyances for their bottle stashes and clothing which they have behind their bikes, or pull. They all seem to be amazing mechanics and handy men. One once dropped his loaded garbage bags to help me get into my car. 🙂

    Oh well.

    If I ever get a camera I’ll have a picture blog. Such amazing amazing people.

    Posted by Pony | January 12, 2007, 9:37 pm
  154. Pony, just where did you get the impression that fibroids can’t get bad enough to justify a hysterectomy?

    I’m sorry, but I’ve got to call you on that one. You’re wrong. Fibroids can be life-threatening. If my hysterectomy had been delayed by another two months, I might well be dead, and I would almost certainly have ended up in the emergency room for a transfusion. The bleeding was that bad.

    For the year before my surgery, I had increasing and intractable pain that could not be controlled with drugs. Every movement felt like I was being kicked hard in the gut, and my weight skyrocketed because I couldn’t exercise. I was also developing back trouble because the only way to ease the pain even a little was to walk hunched over and leaning to one side.

    My doctor (a woman), my gynocologist (also a woman) and the two surgeons (who by an odd coincidence were also women) all agreed that surgery was the only practical option for my situation. My own research in the medical and scientific literature confirmed that there was no other way to stop the bleeding and pain, and give me my life back. That’s got nothing to do with patriarchy or mysogyny, and a great deal to do with the current limits of medical science.

    A lot of women with fibroids don’t have the kind of trouble I did. Much depends on where and how fast the tumors grow. I hope one day that a better treatment for bad cases like mine can be found, but if I’d waited until that happend, I’d be dead.

    Posted by Mary | January 12, 2007, 9:41 pm
  155. And you know Heart unlike a lot of persons with disabilities, I __ CAN__ work. So I do. It takes me a month to do what an able/well person whom my boss could hire would take a week to do. I’m only paid what the project’s worth, not how long it takes me to do it. So that’s the life of one person with disabilities.

    Posted by Pony | January 12, 2007, 9:44 pm
  156. Did they put you on prometrium to shrink the fibroids and stop the bleeding? Why not? Did they do an endometrial ablation? Why not? Did they do a myomectomy? Why not?

    Did you know that surgeons get paid FOUR to TEN times as much for a technically simple hysterectomy than they do for myomectomies? Myomectomies require skill, and take longer. Of course they recommended hysterectomy, it’s what they DO. It’s how they make their hundreds and hundreds of thousands of dollars. Did they remove your ovaries too “while they were in there?”

    It’s all about the money. It’s never about what “needs” to be done but what they were always going to do, from the minute a woman crosses their threshold with a gyne complaint and she’s over child-bearing age.

    Women no matter what their age or symptoms should demand the less invasive and time consuming, and skilled treatments which have been available to women of child bearing age for a couple decades. Those procedures are there. If you weren’t told about them, then your gynes were negligent.

    Posted by Pony | January 12, 2007, 9:56 pm
  157. Hi Pony,

    You asked:

    “But, as an afterthought, is Mary Sunshine aboriginal? ”

    No. White as the freshly driven snow. 😐



    Posted by Mary Sunshine | January 12, 2007, 10:04 pm
  158. Yes. And we have the same take on this mess.

    Posted by Pony | January 12, 2007, 10:08 pm
  159. Mary,

    I’m glad I think it’s true that in part, commentators here ARE discussing the general issue of medical (mis)treatment of women/the disabled, looking at the Ashley case as an example. I do not think that is a bad thing.

    A lot of care was taken in both the post itself and the thread NOT to ‘bash’ Ashley’s parents.

    We already know the parents’ reasoning/explanations, and the mainstream medical ‘rap’. Commentators here are dissenting from these, not misunderstanding them. We are not ignorant of them.

    It seems to many of us that what has been done to Ashley, has been done thinking of the medical problems she COULD have, and not necessarily those she WILL have.

    Finally, yes, two close friends of mine recently had surgery for fibroids in their uteruses. One got to keep her uterus, and the result of the surgery is that she is again fertile – which is what she wanted. The other is older and her children are grown, and she had the hysterectomy. It did her a world of good. She seems almost as young as her daughters now. She had suffered for years and it was too late to try less invasive treatment. That was the right thing to do for her, but it wasn’t necessary for the first of these two people.

    I have fibroids in my breasts. The doctor who discovered them wanted to operate because “they could be hiding cancer.” I’m glad I got a second opinion. The second doctor laughed and said not even a biopsy was necessary. “If they hurt, try drinking less coffee, and see if they shrink any.” I did, and they did. That was five years ago. A friend of mine had the same issue at the same time, and went to the same (first) doctor. This doctor scared her by saying, “Look, you don’t want cancer, consider what that would do to your children.” So she lost her lymph nodes, and some mobility in her arms, and some money. But there wasn’t cancer then, and there isn’t now. My point: it can be worth considering alternatives, when you have time.

    Final note: I’m in my late forties and where I live, it seems that many women have already gone through menopause by this age. I dread pap smears because of the questions that are always asked: they want one to be having problems. As Pony says, if they can operate … they make money! My mother says the same.

    Posted by profacero | January 12, 2007, 10:59 pm
  160. “She had suffered for years”. How horrible for her. For all those years, there were medical and less invasive surgical options. Physicans, gynes can’t be bothered. They’d have to see us several times, monitor it, you know, DOCTOR us. And as with Ashley, insurance companies are their collaborators. Check any of your HMOs or insurance company rates for hysterctomy, and myomectomy.

    Over 600,000 hysterectomies done every year in the United States alone, with a tiny tiny number of those for cancer.

    The only reason lumpectomies for certain breast cancers were offered women is that women began refusing mastectomy, and demanded that procedure, causing surgeons to get more skill in that already available but seldom used and less remunerative option. There are even some types of breast cancer for which no surgery is required; it takes around 25 years to POSSIBLY develop. Many women are never told, when they listen to the fear mongering and sign for mastectomy.

    {this is not to include a blogger we know who has one of the very few reasons for that surgery–but listen up, not all with that gene ever get cancer, there are variants of it BCRA2 v2.1.3 or something.)

    Posted by Pony | January 12, 2007, 11:16 pm
  161. Amy: As this is a woman-centered space, I would like to ask that all of you (particularly anyone male or with a male-sounding username) who love to dump on Pony would jump back. Pony has demonstrated her commitment to women over and over, here and elsewhere. If you read something of hers that sounds “-ist” to you, I would suggest you assume you have misread her. Given that she has talked openly about her struggles with disability and her experience as a woman of the Metis, it seems the least you could do.

    Amy, I don’t “love to dump” on anyone; that was my first post here. I am actually pretty alarmed by what Pony is saying. And I didn’t see anyone else besides Blue confronting her and addressing how profoundly insulting she is, or addressing the comments Blue made her in post about people with apparent vs non-apparent disabilities. Instead, I saw Blue arguing with Pony by herself, while the moderator and everyone else defended Pony. And now, Blue seems to have given up. Pony has dismissed her as an uppity gimp, and that’s that. She will continue to talk to Heart about her views, though.

    I haven’t misread Pony at all. She has made her position very clear: Blue is not important enough to engage with, but Heart is. (You all see the double-standard, right?)

    FTR, I first heard the concept of “the personal is political”–as applied to disability– from radical feminists. This was back in Berkeley, during the 70s, and disabled feminists such as Corbett O’Toole and Judy Heumann influenced me. I consider the modern disability rights movement to be a direct result of feminism and the Civil Rights movement, and would not exist today without them. Feminist ideas and theory are part and parcel of disability studies and theory; so I am puzzled to hear Pony imply that the modern disability rights movement is mostly male-oriented or uses male definitions. The medical establishment might do that, but *radicals* do not.

    Pony: What you have been *addressing*gets its meaning in your own mind Blue, made of your own judgements and anger that did not originate with me or my comments.

    And FTR, I read your comments exactly as Blue did.

    Probably won’t matter, but I will go on record saying so.

    Posted by MrSoul | January 13, 2007, 12:06 am
  162. Mr. Soul– pony has engaged Blue at length over many, many posts. Just sayin.


    Posted by womensspace | January 13, 2007, 12:22 am
  163. Pony, do you really think so little of my intelligence that you assume I’d opt for a hysterectomy if there was another, less invasive solution?

    Prometrium and endometrial ablation would not have helped, because there was nothing wrong with my endometrium. My excessive bleeding was caused by very large tumors on the outside that caused distortion to the shape of my uterus and prevented it from clamping down to stop what would otherwise have been normal bleeding. Even if I had had endometriosis, these would have been bad choices, because they could not have been sustained until I reach menopause.

    The distortion also made a myomectomy pointless. There wasn’t enough normal uterus left to be worth saving. No, that’s not a money-grubbing surgeon’s assessment, I’ve got a picture. Uterine artery embolization didn’t work, either.

    This brings up another point that’s very relevant to Ashley’s situation. There is an almost infinite number of ways in which medical problems can develop, and often multiple possible approaches to solving each one. Each medical intervention has side effects and risks as well as benefits. Not intervening also has side effects, risks, and possible benefits.

    The optimum choice for any particular person is unique to that person. It depends on the available choices, the biological details of the condition, and the person’s individual preferences, favorite activities, and so on. My husband’s solutions to the problems posed by his muscular dystrophy are very different from those used by his siblings and mother, because he has different goals for his life.

    I happen to think that Ashley’s parents did an exceptionally good job of understanding and respecting HER priorities. I admit I am starting from the assumption that she was correctly diagnosed, but I think I am justified in doing so. A missing brain is kind of hard to overlook on an MRI, and her parents and doctors all agree that there has been no change in her condition since she was three months old.

    Ashley is able to express her priorities to some degree. They are those of a three-month old infant. She loves being picked up and carried, and hates sitting in dirty diapers. She’s terrified of her own blood, and hates having her breasts touched. She enjoys going along on family outings, and gets bored when she has to stay in her room.

    Everything that was done to Ashley is arguably related to maintaining her health and quality of life (as she defines it) over the long term. The particular solutions her parents chose were tailored to her highly unusual circumstances. There’s lots of room to debate whether other possible choices might not have served Ashley better, or at least equally well. However, it’s disrespectful to Ashley herself to discount her infant’s priorities as irrelevant.

    Posted by Mary | January 13, 2007, 12:24 am
  164. Heart, okay. But I’m just sayin, too. If one gimp says it, an uppity gimp. If two of us say it, maybe somebody will consider that we *might* have a point.

    PS: I thought she was “mighty ponygirl” too!

    Posted by MrSoul | January 13, 2007, 12:35 am
  165. I have learned a lot from Pony on this thread. As a white educated women, I too made asumptions about what she said along the lines of some of the above posters. I just totally admire your tenacity and courage Pony. I think I get it now. You write from your principles and experience. While others may jump into abstraction and intellectualizations, you remain true to what you know; what you have reasoned from what you have lived. That is true knowledge. Thank you.

    Posted by rhondda | January 13, 2007, 12:53 am
  166. Thank you Rhondda. It seems to me that’s all I can do. I am in awe of people who are great thinkers from a body of education and reading. I can’t do that. But I’ve met several on the feminist blogs and I’m learning a lot.

    “I am puzzled to hear Pony imply that the modern disability rights movement is mostly male-oriented or uses male definitions. ”

    MrSoul, I didn’t say that. But now that you put it down, I think you got something there; that’s a good possibility, because that’s the whole damn world, able or dis-abled. Male oriented using male definitions. I did talk to Blue. I admire her but disagree with her, and I honour that by not patronizing her.

    I do not like to be misquoted, and I’m not interested in going over and over and over it. None of us who have disabilites has energy to waste. I don’t and I’m dam sure Blue doesn’t.

    Posted by Pony | January 13, 2007, 1:35 am
  167. Mary’s 5:57 pm posting tonight is the only rational contribution on this entire board. Do any of you contributors have a child in Ashley’s condition? Do you understand the toll it takes on parents to care for a child with such extreme special needs? How many parents do you think would continue to care for such a child themselves?

    My son is seven years old, diagnosed with autism at 17 months. He is nonverbal, has limited self-help skills, and will need to be supervised and cared for indefinitely. With parents’ height of 5’11 and 6’7, I can only imagine what lies ahead. Because he has a cognitive ability way beyond Ashley’s, I would never consider the “Ashley Treatment” for him. But I know what it’s like to have to carry him to the car across a parking lot when he drops to the ground and won’t get up.

    As far as care providers such as respite workers, I can speak from experience that 90% of them, at least in this county, have no business working with children, especially those with special needs. My husband and I will continue to provide our son with the best treatment for his condition and will care for him ourselves for the rest of our lives.

    Why is it okay to inject our children with growth hormones but the Ashley Treatment is unethical? Why is it so important to you that Ashley’s sexual identity remain intact? If it improves her quality of life, and speaking from experience with a special needs child it will, then what business is it of yours?

    Ashely is clearly lovingly cared for. Her parents courageously made a difficult decision.

    Posted by ayn | January 13, 2007, 4:51 am
  168. Heart says: Re porn and Alas. Very true that I have chortled over pornhounds coming here looking for Britney shots just as you, blue, chortled in the same way. The difference is, there is no porn here at Women’s Space, but there is at Alas. I know you know this, blue, I am mostly saying this so that those reading, lurking, who don’t know what all that was about, know what we’re talking about.

    There is no porn at my blog either, and THAT is what my chortling was about — same as yours. Pony brought up the comment I made at Alas, then mispresented the nature of it by implying I joked about Amp’s porn connections, then chastized me for linking to the actual comment for accuracy.

    Mr. Soul said: I haven’t misread Pony at all. She has made her position very clear: Blue is not important enough to engage with, but Heart is. (You all see the double-standard, right?)

    Mr. Soul is right. I’m done here after this post, unfortunately. Pony hasn’t been actually engaging me on the topic and the things she claims about the “official” disabled, the experience of disabled women, and my sincere questions about her opinions and thoughts. At every turn she has sought to discredit me from any attention here, refused to answer my questions or ignored me altogether.

    Pony says she is not patronizing me, but what she has been doing is disrespecting my disability experience, Mr. Soul’s and others who don’t fit her mold of the women’s disability experience. Anyone who cares to read down into the comments of my Dworkin post at Alas will see that pretty clearly, if they lower their nondisabled radical feminist lenses just enough to stop priviledging the women’s part of the experience as Pony defines it and places as more important than the disability aspect. That’s a view and attitude those of us who are seen as disabled first and gendered second or third cannot afford to take. Nor can be separate ourselves so easily from men like Mr. Soul who’ve been right there with us since childhood as the pathetic “icons” Pony talked scornfully about at Alas.

    If you don’t want to go there and read what Pony actually has said (and what I said, as well) because it occurred at Amp’s site, email me at kaydotfineatgmaildotcom and I’ll mail you the lengthy comments which I have on my hard drive.

    Posted by Blue | January 13, 2007, 8:34 am
  169. ayn just saved me from writing a huge, impassioned blurb about how convenient it was for us to ignore human rights of people with intellectual and developmental disability. No matter. I so hear you, ayn.

    I have a disability, and I have two sons with autism. (Take heart, ayn – my older child is holding down a job in IT, the profession built for autistic people!)

    I do not have a child with disability as severe as Ashley’s. I can, however, state with confidence that mutilation would not be an option for me when considering care for my child. Not in any instance.

    Logically – regarding breast removal? I have a genetic predisposition to breast cancer, not just a ‘family history’. The way that geneticists attack this issue is to do what my family did – my mother (one of twelve women in the last three generations to have suffered breast, ovarian and uterine cancer) was tested for a breast cancer gene. She tested positive to the BRACA2 gene. I was then tested, three months later. I had fifty percent chance of inheriting the gene. I do not have it (best birthday present of my life) All ‘as above’.

    Ashley should have been subject to the same testing procedure. IF she had tested positive then her options for preventative surgery (removal of both breasts, including nipples which contain a cancer risk) and her ovaries – should have been discussed. Not necessarily a hysterectomy – this discussion about how abhorrent changing your daughters menstrual pads (by a respected journalist, no less) I find grossly inappropriate. Major surgery to prevent inconvenience is just not something that should be under discussion, let alone carried out. Cramps and pain during menstruation? If she had severe cramps, medication would be appropriate. And somebody with an assumed intellect of a three month old would still be able to express discomfort or pain.

    Removing breasts because the person may be more at risk of sexual assault? Where the hell did *that* come from? Are we discounting the possibility that she may be more at risk from paedophiles? Why would you even discuss this topic? Ashley is never likely to be out and about in the community, and her risk factor would be very low compared to more mobile intellectually disabled women.

    Someone on another blog suggested a quadruple amputation, because Ashley would not be needing her limbs and would therefore be more portable. They were shouted down because, of course, the idea was ridiculous. As the other mutilation should have been. I don’t count myself a feminist – but have we come to the point where we value females so little that we can make decisions to mutilate children based on our perception of ‘what is best for them?’

    Someone in the Church last year suggested that severely disabled babies should be left to die, and was similarly shouted down. I have no comment about that at all, except to point to cases where parents of severely disabled children have killed the children and have gotten off without jail time and with suspended sentences. That is an indictment on our society, and the value we place on a disabled child’s life.

    Lets just not pretend we are talking about ‘Ashley’s best interests’. Ashley does not have a voice, and there is nothing to suggest that her parents know ‘what is best for her’ just because they are her parents. They do not have a crystal ball, and Ashley does not have a voice.

    *Scrolls up and reads a little* Oh, does this make me one of the *official* disabled? Jesus-please-us. Let you all on a little secret – there is no *them* and *us* – we all have differing abilities, even Ashley. In the Australian Aboriginal language, there is no word for ‘disability’. You might be great at maths – I cant add to save myself, and surruptitiously add up on my fingers behind my back in the shopping centre. My brother has a PhD in mathematics – does that make me ‘maths-disabled’? I can draw (and sell stuff at exhibitions, which I guess makes me a visual artist) and he can’t draw a stick figure – is he ‘art-disabled’? More so than me having muscular dystophy? Give me a break.

    Well, this turned into the huge, impassioned blurb that I was trying to avoid. But like ayn, I have been in the position of anguishing over my children, and I know how difficult it is to cope with the day to day existence of our disabled children. My youngest child is in mainstream schooling (something we are big on in Australia) rather than ‘special needs’ and it is a constant battle every day, every second, and it can wear you down. I would love to keep my son as ‘my little boy’ forever, because I know how hurtful it will be to watch him grow through a friendless, confused adolescence; how he will be puzzled and worried about the reactions to his inappropriate responses to other people and situations; how difficult it will be for him to live amongst other ‘normal’ people. But I cannot imagine, that even if he was as significantly impaired as Ashley, that I would resort to removing the few basic human rights he had left to him.

    Posted by Samantha | January 13, 2007, 9:53 am
  170. if they lower their nondisabled radical feminist lenses just enough to stop priviledging the women’s part of the experience as Pony defines it and places as more important than the disability aspect

    blue, with respect, what does it mean to “privilege” one of the multiple oppressions a woman faces over all of the others she faces? I don’t think that’s what I am doing, or pony, or Mary Sunshine or anyone else. I think every oppression we face, we face *as women* in a world that relentlessly oppresses us *as women*, as well as in many other ways simultaneously– as mothers, as poor people, as lesbians, as people of color, as disabled. Our experiences of all of the above are unavoidably the experiences of *women*. There’s no way to divide that out. Even if we could, how does one go about “privileging” one boot on the neck over another boot on the neck? There’s nothing to privilege there, only a lot of screaming and yelling and strategizing as to how we get the boots off.

    I think that pony did engage you, but that you were missing one another and that was hard to watch. As I wrote in those posts up there of yesterday, I think both of you were trying, but the way you were missing each other, and old offenses from the thread at Alas, resulted in offenses on both sides that got in the way of your “hearing” each other, something that often does happen when things get intense. It feels really bad to hear you won’t be back. I will keep reading you and appreciating your good words, no matter what. I never read through the entire thread at Alas when it was going on; I do know that Amp and many at Alas have always been hostile to a certain kind of feminist woman, not necessarily always radical feminists either– raped women, incested women, battered women, brutalized women, prostituted and trafficked women, who have refused to speak “civilly” enough to suit Amp, who have refused to respond to being tormented by others on his blog nicely and kindly like good girls. I know this has been pony’s experience over there, it’s been the experience of many, many women, and that has meant threads over there got out of control repeatedly, one result being that women were divided against women in ways that they likely would not have been in other contexts. Amp has stoked that to his own benefit, siding with some groups of women and men against the women who won’t play nice about having been brutalized, raped, incested, trafficked, or prostituted by men, making us the extremists and the radicals and the out-of-control feminists compared with his more calm, level-headed and logical approach to things he has never experienced, like rape, brutalization as a woman, incest, being trafficked or prostituted by men, issues he prefers to reduce, in brainy fashion, to pie charts and graphs while all the talking heads sit around and say, “I see,” and move on to discuss why it hurts men too. Anyway, here we are, dealing with the consequences of what he has done among and to women again, I believe. It sucks and I’m sick of it, and done with it, and yeah, really angry about it.

    I apologize, though, for misunderstanding what you had said about pornography, Amp’s site, and so on.

    At the same time, in the interests of clarity for those reading who do not know, Amp has racist, misogynist pornography on his site. This, too, has caused tremendous problems between and among women. He did it for money, and it sucks and hurts, and I don’t plan to stop holding his feet to the fire for it any time soon. It was wrong. It hurts women. It’s still hurting us, right here, in this thread.


    Posted by womensspace | January 13, 2007, 2:53 pm
  171. *Scrolls up and reads a little* Oh, does this make me one of the *official* disabled? Jesus-please-us. Let you all on a little secret – there is no *them* and *us* – we all have differing abilities,

    That term refers to the insurance companies and governments (social services) definition of disabled, and if you don’t meet that definition, then you’re not disabled. No matter how much you are, in reality. The term refers to those agencies who parcel out the pittance persons with disabilities attempt to live on. The disabled people they anoint as disabled get income and in Canada, health coverage. The rest? Well if they aren’t taken care of by family, they are on the streets.

    Posted by Pony | January 13, 2007, 4:37 pm
  172. This is again, another example of what you do. This is so dishonest, such a twist of my meaning.

    Society wants to put up icons, not see disabled persons as real people. You blame me for naming what society does to disabled persons.

    So until you get some consciousness raising (because just like all women aren’t feminists not all persons with disabilities are radical advocates) , until you stop putting words into peoples mouths, we cannot talk.

    I think your tenure at Alas was very destructive for you.

    ” the pathetic “icons” Pony talked scornfully about at Alas.”

    Posted by Pony | January 13, 2007, 4:47 pm
  173. FTR, I don’t directly reply to people with screen names like Ayn (or GALT, either). Been there and done that, my friend! Also, for the 80th time, as Heart said, this is about Ashley, not her parents. Why do her parents have absolute power over her physically? Most of us (on this board) are working for a world in which children and parents might be liberated from their insular nuclear families, and this seems a definite step backwards from that.

    On ALAS, Pony said “Disabled children are the icons of our society.” Does she still believe this, or not? A disabled CHILD (as I was once, almost completely written off; so yes, this subject triggers) is the topic here.

    I have statistics about the treatment of disabled children in this society, and ICON doesn’t quite describe it. Pony’s opinion about disabled children DOES influence what she has said here. If the rest of you don’t see that–well, why are we talking about this, then? I mean, Ashley is an ICON; you read it, a “pillow angel.” She is being treated royally, right? Right? Yes or no? I mean, if disabled children are icons, what is the ISSUE??????

    Is Pony correct about disabled children or not? Either you agree with her, or you don’t. I think Blue and I would just like a general scorecard, or at least I would. Pony, have you changed your mind about what you wrote on ALAS? You don’t have to visit ALAS to reply.

    I wonder, if I wrote something as offensive as “Playboy Bunnies are the icons of our society”–would anyone challenge me at all?

    Posted by MrSoul | January 13, 2007, 4:50 pm
  174. Samantha, I say this in a rueful tone: get him a guitar. When certain ways of being are labeled “damaged” we scorn the people, reject and other them. When they have a guitar, we idolize and worship them.

    Jimi Hendrix
    very little education, barely into high school, discharged from the military because he was so disorganized and couldn’t follow instructions or orders

    Peter Green

    Posted by Pony | January 13, 2007, 4:57 pm
  175. Here are some random quotes of Pony’s from the ALAS thread that Blue and I refer to:

    I am surprised at people who *think* they have achieved something regarding their disability, who come here and do the equivalent of dropping their pants in public.


    The arrogance of the technically enabled disabled is appalling. As long as you’re in a wheelchair and on sanctioned disability rights/pensions/insurance, you’re valid.


    Disabled children are the icons of disability. Why am I not surprised that Blue has so little awareness of what the rest of us experience?


    As it stands, I owe no one an apology.


    My reference to age were regarding the age you were at first disability, which you posted as 16. Anything else is assumption, based on the horreur that I’ve called you out, rather than coddled you, as was expected.


    I think I get what you were saying and doing very clearly, and I’m the only person here who’s had the balls to call you on it.


    This is not your March of Dimes sanctioned disability.


    Disabled women are raped, beaten, neglected and scorned, often just because they don’t have the huge financial pay-outs that male disabled do, from insurance claims.

    (PS: All of those things have happened to me, too, as a male. I was born with CP 50 years ago, and I never got any insurance payments. This is a gross exaggeration.)


    What you still don’t seem to understand Blue, you and the rest of the formally disabled, is the rest of us just have to struggle along without any wheelchairs, literally and figuratively. We don’t fit the male-constructed technologically enhanced disability mould.


    And yes, the tirade goes on.

    While you’re explaining my “icon” status, could you explain the March of Dimes reference?

    Posted by MrSoul | January 13, 2007, 5:07 pm
  176. Pony,

    Exactly right.

    And: the “disability politics” of those with incomes (sub-poverty line on up to infinity) almost never (that I’ve ever seen) include the disabled who have *no* monetary income whatsoever.

    You and I have met these people, many of whom are men.

    My understanding of the “human condition” on this planet, however, is that it is a result of the presence of, and preponderance of, human males. “The patriarchy” is simply one of the ways of perceiving the manifestations of collective humanmaleness. The oppression of human males, by whatever subsystem of patriarchy, cannot be eliminated within any social context that includes a preponderance of humanmaleness.

    The existance of monetary scales and of hierarchies of power within the human population and all defined subsets of the human population will exist so long as a preponderance of humanmales continues to exist.

    To those who are shocked and horrified by my seemingly perverse conclusion, I must ask this:

    Where do you think “the patriarchy” came from? Did it just drop out of the sky? Why does it arise *wherever* we find human populations on this planet, however isolated they are from each other? How can you imagine that any hypothetical subset of humanmales who do *not* instinctively exist for the purpose of malebonding, fighting, and fucking will not be wiped out (macroscopically, over time) by the vast majority of humanmales who *do*?

    That’s why I proritize Female resistance over “other oppressions”, under some of which I count as one of the “oppressed”. Humanmales have continued a relentless war against the Female of all species on this planet for thousands of years.

    It’s up to the humanfemale to figure out how to call an effective (not just philosphically desirable, but effective) halt to this process.

    Mary Sunshine

    Posted by Mary Sunshine | January 13, 2007, 5:19 pm
  177. I wonder, if I wrote something as offensive as “Playboy Bunnies are the icons of our society”–would anyone challenge me at all?

    I think pony clarified what she meant by “icons”– I understood her to be saying something like that disabled children are tokenized, made to be poster children and objectified, as I believe Ashley has been, all the while they are being oppressed, mistreated and marginalized.

    Patriarchy holds up Playboy bunnies as the apex of female achievement and in that way makes them “icons.” Feminists and pro-feminists, are “iconoclasts, smashing the icons patriarchy creates. Since I believe yuo to be a profeminist man, I’d understand your statement to be a critique of patriarchy, just as I understand pony’s statement to be a critique of ableist treatment of disabled children.


    Posted by womensspace | January 13, 2007, 5:20 pm
  178. Oops.

    My post above refers to Pony, but she has made several posts since then.

    The post I was referring to is the one that contains the words:

    “The disabled people they anoint as disabled get income and in Canada, health coverage. The rest? Well if they aren’t taken care of by family, they are on the streets”

    Posted by Mary Sunshine | January 13, 2007, 5:22 pm
  179. “I wish that Maia and Abyss2Hope and Blue and RachelS and all of the amazing women who, in fact, make Alas worth visiting, would stop giving Amp credibility by their participation.”

    My latest time of guestblogging at Alas ended at the end of 2006. Give me another outlet besides my own blog that reaches (or has the potential to reach) similar numbers of people who aren’t likely to find my own blog and which isn’t linked to porn or anything else I don’t support and I would be happy to consider guest or co-blogging there. Amp’s the only one who has asked me.

    Posted by abyss2hope | January 13, 2007, 5:35 pm
  180. I’m baking bread this morning, but took time to scan the news. TIME online has a story on autism,9171,1576829,00.html

    And of course, another on Ashley.

    Posted by Pony | January 13, 2007, 5:41 pm
  181. FTW, as a child, I was exploited by the medical establishment, which experimented on me, Dr. Caligari-style, while never calling it that. One of those operations is no longer done, since they decided it “didn’t work.” Nevertheless, they will never call it experimentation.

    I apologize, but her comment triggered me then, as this whole discussion does now.

    When I read about the Ashleys of the world, I literally become ill. After awhile, I just have to stop.

    Posted by MrSoul | January 13, 2007, 6:21 pm
  182. Profacero, my issue is that I don’t think it’s legitimate to start a discussion on the ethics of Ashley’s treatment by automatically discounting everything her parents and doctors have revealed about her condition. Some doctors tend to prescribe treatment too aggressively, and some plumbers are scam artists, too. That doesn’t mean refusing to accept that a toilet is clogged and must be fixed is a prudent, sensible, or even sane decision.

    You have a good point that some of the decisions regarding Ashley’s care were based on probabilities, not certainties. It would be very nice if we knew the future with 100% certainty, but we can’t. The 10% probability that we might be wrong doesn’t justify not planning for an outcome that’s 90% certain, especially when the decision is being made for an incompetent dependent who can’t choose to disregard the risk. When there are several possible ways to treat (or not treat) the same problem, it is also legitimate to consider whether side effects will be particularly harmful or beneficial for a particular person.

    Whether or not Ashley’s treatment was ethical can’t be judged on the basis of whether it would harm or benefit some other disabled woman. It also doesn’t matter whether Ashley’s treatment has the potential to be abused if applied generally, or whether its use as a political football will help or hinder the goals of the disabled community, feminism, or anything else. The only thing that matters is whether it increased or decreased Ashley’s health and quality of life.

    An earlier commentator said that it is not ever legitimate to consider whether a course of treatment benefits a caregiver. I disagree. Ashley’s welfare depends on the physical health of her parents. When they can no longer handle her care at home, she will end up in an institution. Her quality of life will be much lower, and the lesser standard of care carries substantial health risks, as well. Anything that preserves her parents’ backs from injury, or allows her grandmothers to handle babysitting, is directly to Ashley’s benefit.

    As far as Ashley’s family risk for breast cancer goes, Samantha, what makes you assume that Ashley’s parents, with their obvious sophistication and good access to medical services, would not have done genetic testing to confirm her risk before subjecting their daughter to preventative surgery? I would be very surprised indeed if they’d overlooked that detail, especially when they knew that they would have to justify such surgery to a board of 40 critical strangers.

    It is likely that Ashley’s parents chose to remove her breast buds and keep her ovaries, even though both were cancer risks, because of the side effects. Breasts are a net disadvantage to Ashley: she objects strenuously when they are touched, which complicates strapping her into her chair and would make the necessary frequent breast exams traumatic. The risk of ovarian cancer, on the other hand, is balanced by the even larger risk of osteoporosis if her ovaries were removed.

    Posted by Mary | January 13, 2007, 7:48 pm
  183. Mr. Soul, what happened to you is ghastly– I’m glad you’re naming it, writing about it, it needs to stop, and I know it hasn’t, I know it still goes on and it’s inexcusable and macabre. Do you have a blog? If not, you should!

    As to the quotes from the Alas thread, with respect, I really don’t want to import that discussion here, and in particular when blue isn’t going to be participating, but even if she were here– that was a huge thread, very confusing, so much stuff there that was offensive and incendiary and a *lot* of misunderstanding. We’d really need the entire context to address the issues you raise here, we’d also need all the other participants here to clarify their own thoughts and so on. I approved your post but would rather keep the thread on the topic of Ashley and not on old trainwrecks which hang around haunting us, which they do!

    I can totally appreciate that these discussions have to be triggering for you and understand your intensity in talking about these things. I get that way when I talk about what happens to women during medicalized births; I lose all perspective, really (not saying I think you have, just saying I do!)

    I haven’t read the articles carefully yet, but I see that disability activists and I think others have asked for an investigation into the procedures which were performed on Ashley. I am so glad (and maybe that’s what your links are about, pony.)

    Mary, bottom line, nobody deserves to be cut, mutilated, bombarded with hormones, EVER, without their consent, no matter WHAT the justifications or rationales. NOBODY. And many procedures I think should not be done WITH people’s consent (which is a different thread for another day.) That is, of course, my opinion, but I feel VERY strongly about that, and yes, I feel that way all the way down to circumcision for infant boys, most vaccines, almost everything done to women in medicalized pregnancies and childbirths, etc. The fact that doctors can cut and move parts around and prescribe drugs doesn’t make it ethically correct for them to do so WITHOUT CONSENT. Which Ashley CANNOT GIVE. Just like a boy child — I have had five of them — an infant *cannot consent to circumcision*. Just like women in labor cannot consent to what is done to them because they aren’t even asked, it’s just DONE most of the time. Argh, I need to stop.

    Three of my adult children are up this weekend from Los Angeles visiting; the first two have arrived and one arrives tomorrow. On Monday, Martin Luther King Day, we are having a big family gathering. I will be home and checking in, of course, but won’t be able to respond at length to things the way I sometimes can or to read long posts as carefully as usual. I’d ask that everybody in the discussion work hard to stay on topic and to not rehash old arguments that have already been hashed and hashed and rehashed. In particular, I’d like to not have discussion of old Alas threads or threads from other boards.

    Oh, and Abyss2Hope, I hear you, but I think you’re a great blogger and that if you’re not on Alas, people will go to your blog to read you. If you’re at Alas, they are less likely to, or that’s what I think anyway.


    Posted by womensspace | January 13, 2007, 9:05 pm
  184. MrSoul, one of my ‘disabilities’ is from a surgical experiment to correct something born with. I won’t describe it further. I understand well the triggers. I’m sorry that happened to you.

    Abyss2Hope please blog.

    Posted by Pony | January 13, 2007, 9:24 pm
  185. Womanspace, I don’t think your position is very rational, or very humane. Carried to its logical conclusion, it requires Ashley’s parents to have stood by and let her starve to death as an infant, because she could not consent to the surgically implanted feeding tube that’s kept her alive. Is that really your position? Do you also believe that all children and infants should be denied all medical care, because they can’t consent to it? What about elderly adults who are not mentally competent? For that matter , what about the normally competent adult who gets injured in a traffic accident, or is very ill, and is temporarily unable to consent to life-saving medical treatment?

    Or is it just your personal distaste for the particular surgery that was performed on Ashley that’s behind your objections? And if so, why should your prejudices overrule the decisions made by Ashley’s family? Perhaps they don’t share your opinions about what medical treatments should be banned. Or perhaps they don’t particularly like subjecting their daughter to surgery, but believe that the benefits to her outweigh their personal squeamishness.

    There is no perfect solution to the question of providing medical treatment to people who can’t consent to it. If you insist on the patient’s own consent, you automatically abandon large numbers of the people who most desperately need care to die of neglect. I think the current solution of allowing a legal guardian to offer proxy consent is a pretty good compromise. Such guardians can be appointed in advance by competent adults, or are selected according to a strict set of rules from among those most likely to keep the patient’s wishes and well-being in mind. Sometimes guardians make bad decisions, but so do plenty of competent patients. What’s important is that guardians are more likely to make the same bad decisions as the patient would, than some government agent who knows next to nothing about the patient.

    Posted by Mary | January 13, 2007, 11:50 pm
  186. Give me another outlet besides my own blog that reaches (or has the potential to reach) similar numbers of people who aren’t likely to find my own blog and which isn’t linked to porn or anything else I don’t support and I would be happy to consider guest or co-blogging there. Amp’s the only one who has asked me.

    It’s tragic that the only way you feel you can get an adequate audience is to do your writing for some bloke instead of for yourself.

    Maybe there should be more feminist group blogs, you know, run by women for women. It would spread the burden, more posts to the blog and I would guess increase traffic.

    Why give your labour to a man to further his ambitions ?

    Posted by therealUK | January 14, 2007, 12:30 pm
  187. As a former ‘pillow angle’ for 14 years, i want to let everyone know that being a ‘pillow angle’ is curable. That the family has done is made their own living human doll. Now when Ashley is cured, she will have serous long term medicle problmes due to the Dr Mengles of her hospital and her parents sick ideas of home healt care.

    To all those ‘pillow angles’ out there, keep the faith and dont let your parents cut out your bits and pieces.

    To the owner of this blog: Thanks you for the forum and the opportunity for us former pillow angles to have a voice.

    Posted by pillowangle | January 14, 2007, 2:03 pm
  188. Pillowangle, with respect, I think you’re overlooking a few things.

    First of all, you can write in coherent sentences. That means whatever your physical problems were, you had the prospect of reasonable mental development. Ashley doesn’t. She’s barely a step above a vegetative state, and she’s not going to get any better, because most of her brain is missing. The ethics of how to treat a person who’s a permanent infant are very different from the ethics of how to treat a person who is or will be able to understand their physical situation and communicate preferences.

    Second, just what “long-term medical problems” do you think Ashley would have, if Harry Potter waved his magic wand and grew her the brain that she now lacks? At least, problems that are the result of what was done to her, rather than the physical damage that being bedridden does to bones, etc.?

    She’d be short. About four inches shorter than me, as it turns out. Being short makes it a little harder to buy clothes, and I have to use a footstool to get to the upper shelves of the kitchen cabinets, but that hardly qualifies as a “long-term medical problem”.

    She’d be flat-chested instead of generously endowed. She’d find that a plus, in my experience. Large breasts look pretty ridiculous on a small woman, and they cause back trouble. There’s a reason that breast reduction is one of the most common elective plastic surgeries.

    She wouldn’t be able to bear children and breast-feed them, which might or might not become an issue for her, depending on whether or not she wanted a family and how she felt about adoption. She wouldn’t menstruate, which believe me is a very large improvement in one’s quality of life. She also wouldn’t get some common cancers that run in her family. Nothing that was done to her would make her unable to participate in and enjoy sex, if she developed the mental capacity to do so.

    So, to what “long-term medical problems” were you referring, exactly?

    Posted by Mary | January 14, 2007, 5:04 pm
  189. Thank you, pillowangle, for speaking your own truth. If enough of us just keep calling it, keep talking about the right we all have — all of us — to live and be in the world as we are, no operations we don’t need or want, no drugs that make us sick, cause us pain, and shorten our lives, no forcing us to conform to ANYTHING — NOTHING — not to what society calls a “man,” not to what society calls a “woman,” not to what society calls a “non-disabled person,” not to what society calls a “disabled” person, nothing that diminishes us, nothing that dehumanizes us, forces us into dependency, silences our voices, trivalizes our existence, NONE of it, then maybe we can *force change* in ways that are meaningful, if not in our lifetimes, then in the lifetimes of our sons and daughters, whether sons and daughters of the body or sons and daughters of the heart and spirit.

    I don’t know what is so difficult about all of this, you know? Keep your goddamn hands off of our BODIES. That is just basic basic basic feminism 86, bonehead feminism, and yet it’s all but lost amidst academented bullshit, some of which is deadly to WAY too many of us.


    Posted by womensspace | January 14, 2007, 6:08 pm
  190. Mary, in response to your post up there a ways, I am a non-hierarchical, noncoercive parent, at least as much as it is possible for me to be one, given that all of us have cut our eyeteeth on hierarchy and coercion, it’s all we know, and it something we have to uncover in ourselves and unlearn, those of us committed to new ways of living that don’t involve, again, force, coercion, and hierarchy. I’m mentioning this because it’s useful in responding to your question about feeding tubes, etc. As a noncoercive parent, my goal has been not to force my children to do anything, not to coerce them, but instead, wherever there is some sort of conflict, to immediately search for win/win resolution in which neither I, nor my kids, experience coercion, being forced to do something against our will. I have noncoercively parented infants, newborns, simply by being responsive and willing to take the time to figure out what’s going on. If they cry, as their parent, who brought them into the world, it’s up to me to figure out what hurts, what is wrong, and to find a way to ease their pain or whatever it is without hurting myself in the process. This parenting style has deeply informed my politics, my ethics, my view of life and people, animals, the earth, the world, everything.

    There is almost no situation in which an infant or toddler must be forced to do a thing, but where there are such situations– for example, a child steps onto railroad tracks with a train approaching and there is no time to spare, I would then have to act on the presumption/assumption that my child wants to live, and so would give consent to being grabbed from the tracks, if there were time to get consent. I use this kind of logic ONLY in situations in which there is the possibility of *imminent death or permanent, irreversible damage*. This would be the logic I would apply if I were to have a child like Ashley. This is the logic I would hope someone would apply if I were in a situation like this. I would act on the assumption that my child wants to live and not die, and on that basis would allow the insertion of the feeding tube, making every effort to connect with her emotionally, physically, around the entire process. All of the stuff that was done to Ashley is a far cry from the situation of stepping onto the tracks in front of a train, of dying from starvation for lack of nourishment. Anything beyond acting on the presumption that a person wants to live in a situation where death is imminent calls for negotiating with the person to determine consent.

    Much of my thinking about these things has to do with my own experience of refusing to coerce even my newborn babies. *This is possible*. If it’s possible with newborn babies, it’s possible with disabled people.


    Posted by womensspace | January 14, 2007, 6:30 pm
  191. She’s barely a step above a vegetative state,

    IF Ashley is at the level of a three-month old, that is not remotely “a step above a vegetative state.” As has already been posted. Three-month-olds are remarkable human beings. They smile, listen, react, attempt to communicate, hear, respond to sights, sounds, touch, music, voices, try to reach things, follow things with their eyes, all sorts of stuff. Here, let me get a description.


    Your 3-month-old’s development

    * Holding her head steady
    * Better arm, leg, and hand co-ordination
    * Sleeping patterns getting more manageable
    * Clear recognition of mum and dad
    * Start reading to her now
    * Early language development
    * Touch becoming more sensitive
    * Beginning to interact with others
    * Is my baby developing normally?

    Holding her head steady

    During this month, your baby may be able to lift her head while on her back and hold it for several minutes. If sitting with support, she may be able to hold her head steady and erect. When she’s on her stomach, you might see her lifting her head and chest as if she were doing mini-pushups. You can offer encouragement by sitting in front of her and dangling a toy.
    Better arm, leg, and hand co-ordination

    Your baby can now wave her arms and kick her legs. As her hip and knee joints become more flexible, her kicks are getting stronger. And if you hold her up with her feet on the floor she should push down on her legs now. She can bring both hands together and open her fingers, though she’ll probably use a closed fist to bat at dangling objects. (Of course, swatting at a toy or other object is developmental progress in itself!) Encourage her hand development by holding out a toy to see if she’ll grasp it.

    Sleeping patterns getting more manageable

    Starting about now, sleep-deprived parents may get some respite.

    By three to four months, your child’s sleep patterns start to settle down. Many babies this age can even sleep through the night, though they may still wake up for the occasional feeds. But some children may not sleep through the night (which, for the first year, usually means just six hours at a time), for a good three to six months, so don’t worry if your baby still wants to keep you up at night.

    Clear recognition of mum and dad

    By three months, and probably earlier, your baby will have formed an attachment to you and be familiar with your face. Most likely she will still smile at strangers, especially when they look her straight in the eye and coo or talk to her. But she’s beginning to sort out who’s who in her life and definitely prefers some people to others.

    The parietal lobe, the part of the brain that governs hand-eye coordination and allows a person to recognise objects, is developing rapidly now. And the temporal lobe, which assists with hearing, language, and smell, has also become more receptive and active. So when your baby hears your voice now, she may look directly at you and start gurgling or trying to talk back.

    Start reading to her now

    Reading to a child, no matter how small, will pay off. It helps your baby develop an ear for the cadence of language — in fact, varying the pitch of your voice, using accents, singing, and vocalising make the aural connection between you and your baby that much more stimulating. But don’t worry if she looks the other way or loses concentration — adjust her stimulation by trying something else, or give her time to rest. Co-ordinate your interactions with her responses and interest.

    There are also plenty of good books to read to your baby. Choose board books with large, bright pictures and simple text — or even wordless books with pictures for you to narrate.

    But at this point you needn’t be slavish to age guidelines. Books designed for older children with clear, crisp images and bright colours can captivate a baby. Or you can even read poetry originally written for adult ears. What your baby doesn’t understand will nonetheless delight her because of its musicality (you’ll probably be amused as well).

    Early language development

    This is a sensitive time when verbal stimulation is particularly important for your baby. Seize the moment and engage her with a variety of words and sounds. Recent research locallinks higher intelligence levels to how many words a child hears in the first year of life. This is the time to set a sound foundation. Even a trip to the shops can be a chance to stimulate your child — as you roam the aisles, point to objects and identify them by name. Your baby can’t repeat these words yet, but she’s storing all the information in her rapidly developing memory.

    A baby in a bilingual home will get double the language training if she regularly hears both languages spoken. If you’d like her to learn more than one language, have each parent speak to her in a different language.

    Touch becoming more sensitive

    Stimulate your baby’s sense of touch with materials such as fur, tissue, felt, and terrycloth, or look for books that make touching a part of the reading experience. Touching, carrying, and massaging your baby, along with moving her through the surrounding air when you lift her, are powerful ways to relax her and may even increase her alertness and attention span.

    Beginning to interact with others

    Your child is set on “receive,” drawing conclusions about the world around her. By now, she may respond to her face in the mirror by smiling (babies love looking at themselves), and she may stop sucking her thumb or bottle to listen to your voice. By cooing or making noises at her, and by describing even the most mundane household chore, you’re not only connecting with her but also encouraging her to express herself. Even with others, your baby is becoming more animated and engaging — flashing smiles, oohing and cooing. The fun has really begun. When you’re with friends, keep her nearby so she can hear the richness of human interaction.

    Is my baby developing normally?

    Remember, each baby is unique and meets social milestones at her own pace. These are simply guidelines to what your baby has the potential to accomplish — if not right now, then shortly.



    So, how is this a nearly “vegetative state”? We know that Ashley has expressed clear preferences for certain things (like music), for being held, carried around. She *has*, in *fact* been communicating with her caregivers which means she is *capable* of communication at her own particular level in her own particular way.

    As to her medical problems if she did recover, having one’s system bombarded with hormones can have lifelong consequences in the form of blood clotting problems, cardio-vascular disease, strokes, increased likelihood of ovarian cancer (Ashley still has her ovaries) and so on. Aside from all that, to have had the people who are said to have cared about you the most, loved you the most, do things to you which have *lifelong consequences* is HUGE. That is HUGE. To have had your parents decide to sterilize you, remove your breasts, do anything at all to your genitals or reproductive organs, is significant. They chose to do something which will affect you for all of your life and they did not give you any chance to consent to it, they didn’t ask you for your thoughts, nothing. Kind of like the babies born every year with “ambiguous genitalia.” Doctors then commonly decide what “gender” the baby should be and start chopping off and rearranging and whatever. These children often, often, often SUFFER in their lives in all kinds of ways. Why should their parents/doctors have chopped off their body parts in this way? For what reason? There is no good reason. I remember a little boy, Lee, who was in daycare with my oldest two sons who are now 34 and 32. He had been born with “ambiguous genitalia” and was *constantly* in the hospital having all of these painful surgeries and recoveries, because, as one of my sons described, “Lee’s weenie is a *besign*.” So what if his weenie was a “besign”? Why not let him decide what he wants to do when he’s grown. To have grown into an adult having had all of these surgeries with who knows what all consequences and no voice in the matter? That is a horrible thing, just as pillowangle has suggested, as Mr. Soul has also said. I see no benefit to anyone (except doctors, hospitals and drug companies) in dismissing the significance of these acts.


    Posted by womensspace | January 14, 2007, 7:09 pm
  192. Heart I found this mother of a 150 lb, 5’9″ son with similarly disabling condition to Ashley’s blogging about her thoughts on what was done to Ashley.

    Posted by Pony | January 14, 2007, 7:18 pm
  193. Wow, pony, what a great link!

    I cannot believe they also removed Ashley’s appendix “just in case”!

    But these excerpts:

    Dreammom: I can’t begin to lift Dear Son up and cuddle him like a baby. I haven’t been able to do it for years. I don’t know many mothers or grandmothers who wouldn’t love to hold their babies and kiss their head. But kids grow. When they are around ten or so, most mothers will be sad their “babies” are growing up and they can’t do that. They will mourn the loss of that. But each age brings something new and exciting. That’s part of the joy of being a mother, watching your kids grow up. The same occurs for disabled children.

    EXACTLY. I always hug and kiss my kids as much as possible when they are young, because the day comes when, guess what, can’t lift them, can’t carry them around, and they don’t always want to be kissed and hugged by you, maybe they almost never want to be. Since when do we perform surgeries and stunt growth so we can always hug our kids and carry them around, as though that’s what they are always going to want?

    Dreammom I get up every morning and go over to Dear Son’s room and take his arms, which don’t work, and wrap one of them around my neck. I then wrap my arms around him and give him a hug and kisses. That’s what we do. (That’s also how I learned he needed to go to the hospital for the MRSA pneumonia. I went to hug him and he was so hot it took my breath away. You can read about that in the MRSA Pneumonia, Part One.) He still is loved but I don’t need to hold him like a baby to do it. When I get ready to lift him into the wheelchair, I lift his back up and off the bed, and then stop a minute to hug him before putting him into the chair. If I bring him into the living room, I prop him on the sofa and support him by holding him up next to me. I kiss him on the head. His Dad does the same thing when he has him. He is loved. But even when he didn’t know what was going on, I still gave him a bath, I still changed his diapers, I still fed him nutritious food and I still loved him. He wasn’t any less a person because he couldn’t do things or because he didn’t know what was going on. Never. I always tried to make him feel good about who he was, regardless of what his body could or couldn’t do. I learned to admire him for being a healthy, well adjusted young man, despite his disabilities. I wish I were as confident as he is some days and I have a lot of abilities.

    That is amazing and beautiful. Dreammom is a single mom, living in an apartment, who is her son’s only caregiver. She also works part-time outside the home and has her own disabilities.

    Thanks again for the link, pony!


    Posted by womensspace | January 14, 2007, 7:42 pm
  194. I also liked the way she set it up.

    Solution (as was chosen)
    My Thoughts

    I hope she finds this blog. 😉

    Posted by Pony | January 14, 2007, 8:09 pm
  195. I just have to put this in here Heart. I’m not sure if I’m breaking blog etiquette, either for you or her, but I think this is not to be missed:

    If Ashley Could Just Talk, I Wonder What She’d Say…

    If Ashley could just talk,
    I wonder what she’d say,
    Would she say, “Come on, Dad”,
    “You need to let me be.”

    If Ashley could just walk,
    I wonder what she’d do,
    Would she say, “Please don’t Momma”,
    “I just wanted to be like you.”

    If Ashley could just grow,
    I wonder what she’d do,
    If her Mom let her be tall,
    Like the other mother’s do.

    But Ashley’s always silent,
    Like a good little girl should be,
    Because she is disabled,
    She’s not like you or me.

    And that’s why she’s their Angel,
    All white, and pure and true,
    Because she can never be,
    Like either me or you.

    I wonder what God thinks,
    When Ashley prays to him at night,
    If he takes his little Angel,
    And tries to make it right.

    I wonder what he thinks,
    When the committee was in the room,
    And all the brilliant minds said,
    “Do whatever you want to do”.

    I wonder if he’d thinks it’s right,
    For them not to let her grow,
    Or did he think it’s a-okay,
    Since she will never know.

    I wonder if God worries,
    When all disabled children pray,
    “Please don’t let my parents do this,
    Because I can not run away.”

    Posted by Pony | January 14, 2007, 8:19 pm
  196. Womanspace, if I’m reading your response properly, it seems like you are conceding, in principle, that medical care ought to be provided if it’s in the patient’s best interests, even if the patient can’t consent to it. Since you accept Ashley’s feeding tube as appropriate, you’ve even conceded that justified care may involve significant amounts of cutting, slicing, and mutilation.

    You also seem to agree with me that it is a parent’s responsibility to determine what care is necessary for her child, and that such determinations ought to be made on the basis of whether a particular procedure is likely to improve that particular child’s well-being. I happen to agree with you that it is better to explain to a child why certain restrictions are necessary, than to impose arbitrary rules with no explanation. None of which applies to Ashley, who can’t understand spoken language.

    So it seems to me that your objections to Ashley’s treatment are not based on the fact that they were surgical, or that her parents were making decisions for her care when she can’t. You just object to the particular choices her parents made, especially their determination that it was more important for her well-being and quality of life to maintain her mobility than that to maintain her fertility.

    It’s obvious that your priorities for Ashley are different from those of her parents. There’s nothing wrong with that, except for your insistence that your priorities ought to overrule theirs in determining her care. I find this a strange inconsistency, given your stated efforts to use a nontraditional approach to raise your own children. Should an outsider be allowed to overrule your decision because they have different priorities for child-rearing?

    Posted by Mary | January 14, 2007, 8:22 pm
  197. I think that describing Ashley as a “3 month old” is a bit of a red-herring.

    It’s something that has appeared in the press as more of a soundbite rather than an actual clinical description. Children with brain damage or injury are not (generally) on the the given standard continuum as a child without that injury, but just at a different age. It would be like describing an average sized adult who loses their legs from below the knee as “having the leg length of a 7 year old”. It just doesn’t map right.

    I think the press resort to such comparisons (especially when it come to the not really understood that well by anybody human brain) because they don’t have a better way to describe it, but it is misleading. We humans do not exist on such a simple straight line continuum of physical and mental development.

    And even though there are generalisation that can be made, and some absolute measures of function are possible, and comparison of function along with people’s own experience of themselves is all fine, even so there is a problem when mainstream thought wants to draw a very particular line and call it normal and then label everyone else in relation to that in order to describe what then becomes varying shades of deviance.

    Posted by therealUK | January 14, 2007, 8:25 pm
  198. Apologies to Dreammom, I neglected to click and copy this in, from the end of the poem.

    This is NOT the Koufax’s.

    P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.

    Posted by Pony | January 14, 2007, 8:27 pm
  199. This is beginning to really stink.

    Mary is coming across as a pr flack, and realizing that reminded me that there most surely is a public relations/marketing machine at the back of the information the press received on this story. It would likely come from the medical school fronting this, root of medical school grants being pharmaceutical companies, and be one connected to the article publication by the physicians/surgeons in a medical journal. The marketing dept, who ever it is, will have sponsored or helped with the parents’ public relations effort, as part of a strategy to develop this procedure as legitimate research (grant $$ a’flyin’) for the surgeons/physicians/medical school.

    Ethics committees attached to medical schools are about as much to be trusted as the Police Complaint Dept About Police Brutality.

    Mary you have made a lot of very certain sounding statements about Ashley’s medical conditon. As I’ve noted you’ve moved “family history” of breast cancer to “genetic”.

    I wonder who you are? At least I’m pretty sure of one thing; you are what is called a concern troll. You will argue whatever is said here, enjoying yourself in a disgusting macabre sick way.

    Posted by Pony | January 14, 2007, 8:37 pm
  200. Exactly right, therealUK, crucial point, and I thought to say something like that, but my posts were already long, verbose, multiple… but you said it well. This is one reason I never took my kids to “well baby” appointments where they would be measured against some white, male, heterosexist, middle class, rich, standard of “normal” so far as development, growth, etc., and then, if they didn’t “measure up,” have their development and growth externally regulated by doctors, psychologists, drugs, who knows what all, and if I didn’t do what was prescribed, I’d be “negligent” or what the hell ever. Doctors are for when you are ill and they actually do have resources which will alleviate pain or promote healing. Doctors are for when you have gashed yourself and the bleeding isn’t stopping. For when you broke your leg. They are for when you have a placenta previa birth or for when your baby has spina bifida. They are not for when you want to find out if you or your children are “normal,” so that if you “aren’t normal” all of the white male heterosupremacists can quickly slice, dice and medicate so as to make you “normal” by THEIR lights. WHO THE HELL WANTS TO BE NORMAL IN THIS WAY?!!!


    Womanspace, if I’m reading your response properly, it seems like you are conceding, in principle, that medical care ought to be provided if it’s in the patient’s best interests, even if the patient can’t consent to it.

    No, I am not. I am saying that medical care ought to be provided if you are reasonably sure (1) the patient is in imminent danger of death; (2) the patient wants to live, emphasis on the “wants,” because the issue, again, is a person’s CONSENT, not what others decide might be in the “patient’s best interests,” which is a completely different kettle of fish. Absent some clear statement that a person does NOT want to live, we have to presume a person does want to live and would consent to anything that would save her life if she were in immediate danger, because it can never be ethical, by any standard, to presume someone wants to die absent their clear statements to that effect. Other than basic survival in the face of imminent death, *nobody but the patient knows what is in her best interests.* NOBODY. Not caregivers, not doctors, not scientists, drug companies, psychologists, nobody but the *patient herself*.

    You also seem to agree with me that it is a parent’s responsibility to determine what care is necessary for her child, and that such determinations ought to be made on the basis of whether a particular procedure is likely to improve that particular child’s well-being.

    I do not agree with you in any way shape or form. Parents are responsible for their children, having brought their children into the world, but central to that responsibility is never to violate the child, mutilate the child, or cause harm, pain, or damage to the child, or to do anything the child does not give her consent to. Determinations should not be made on the basis of whether a parent or others think a procedure is “likely to improve a child’s well-being”. Determinations should be made on the basis of *what the child wants*. Every step of the way. A parent’s responsiblity is to figure that out, pay attention to the child, care about the child, watch and know the child, mentor the child, help the child to understand the world she has been born into, help her to make sense of what she experiences and encounters, offer the parents’ own analysis and critique of things, the parents’ ideas and observations, and then to help the child do what *she* wants to do because *she* believes it is in her best interests and because it is what *she* wants. If this cannot be determined by the parent because the child can’t provide this information, then NOTHING ought to be done at all. Hands off the child, everybody. I’ve stated and restated this and won’t restate it any more times.

    So it seems to me that your objections to Ashley’s treatment are not based on the fact that they were surgical, or that her parents were making decisions for her care when she can’t. You just object to the particular choices her parents made, especially their determination that it was more important for her well-being and quality of life to maintain her mobility than that to maintain her fertility.

    See above, and all of my other posts. I object to anything Ashley could not consent to, short of immediate action to save her life from imminent death *because in that situation Ashley’s consent can be presumed*. Consent cannot be presumed for anything beyond the immediate saving of her life. It can never be presumed, for obvious reasons, absent a clear statement, that someone does not want her life saved when she is in imminent danger.

    It’s obvious that your priorities for Ashley are different from those of her parents. There’s nothing wrong with that, except for your insistence that your priorities ought to overrule theirs in determining her care.

    Where in this gigantic thread or anywhere else, ever, have I said anything remotely like, much less “insisted”, that my priorities ought to “overrule” anybody’s? That *too* would be a violation of my own ethics, beliefs and politics. I am against coercion, against hierarchy, against force of any kind. I am for win/win solutions, creative problem solving, nonviolent resolution of conflict, consensus decision making, with a central focus on *never touching anybody in any way without their express consent*, EXCEPT if they are in imminent danger, i.e., about to starve or be run over by a train, in which case they can be presumed to want to live, which is the equivalent of their having given consent.

    I find this a strange inconsistency, given your stated efforts to use a nontraditional approach to raise your own children. Should an outsider be allowed to overrule your decision because they have different priorities for child-rearing?

    And once again with the ongoing reversals.

    Who has ever suggested that anybody be allowed to overrule ANYBODY’s decisions *for themselves*, for their own lives? I have said *the exact opposite*. Out of my own ethics, values and politics, I would not attempt to “overrule” anyone *else’s* decisions *for their own lives*, for *themselves*, neither do I believe anyone is justified in doing anything like that, all the way up to, or down to, more like it, George Bush, for example, overruling entire people groups’ decisions for themselves and their own lives. My saying what happened to Ashley is completely wrong and immoral is not “overruling” anything. It is not “insisting” anybody do anything at all. It is me, using my one voice on my blog, speaking to the principalities and powers and the rulers of the earth in high places, like we used to say in my old world. It is me, speaking truth to power, saying *this is wrong* and *this is destructive* and *this hurts people*. This is what is known as “dissent.” It is what is known as “analysis” and “critique” and “politics”.

    In this instance it was the parents who “insisted” on their own priorities, without Ashley’s consent. And the doctors, without Ashley’s consent. And the drug companies, without Ashley’s consent. It was all of these people, some of them exceedingly powerful people, with a lot of money, who made decisions without having one fucking clue what Ashley herself might have wanted had she been able to communicate in traditional ways. THEY are the “insisters”. THEY are the “overrulers.” THEY are the ones, above all, with the POWER to make their overruling and insistance into realities for other people’s lives.

    With all due respect, Mary, this conversation is feeling to me like conversations I’ve had with men’s rights types, anti-feminists, and this is because you continue to distort what has been posted here by me and others, mischaracterize it and misrepresent it, in the way that anti-feminists invariably do; i.e., for whatever reason you (and they) have difficulty making distinctions between *actual violations, mutilations and coercion*, and *dissent,* i.e., *speaking up* about what happened to Ashley to say it’s wrong, it’s wrong done to Ashley, it’s wrong done to disabled people, to women, to *anybody*. It’s wrong if it were done to YOU. As anti-feminists invariably do, you posit that feminist dissent, woman-centered opinions, and in this instance, the views of disability activists, are somehow the rough equivalent of patriarchal power elites on rampages of unnecessary surgeries, drug prescribings, mutilations, violations, of all kinds. It’s *the latter* which equal “insistence” and “overruling,” not the rest of us, telling the latter to fuck the hell off, move on over, because the Revolution is here and it isn’t going to go away.

    I will read your future comments, of course, but if they are along the same lines as your recent comments, I will not be approving them.


    Posted by womensspace | January 14, 2007, 9:10 pm
  201. Pony – I’ve also wondered whether Mary were an industry representative, and I think she is exhibiting troll characteristics. I think her tone is condescending and I am a little tired of it.

    Posted by profacero | January 14, 2007, 9:41 pm
  202. Well, you two said it a lot shorter than I did, pony and profacero! 😛 What tips me off, too, is the flat, dispassionate writing style, meaning it’s either, like you say, pony, somebody attempting to divert discussion and to be a jerk, or someone we know trying to conceal their writing style and coming across as flat and dispassionate, (and by someone we know, I’m thinking of guys like all the men’s rights guys from Alas who made their own board, etc.) I didn’t think of the p.r. angle, though, but now that you mention it, heck yeah. There’s a LOT of money, in all sorts of places, for procedures like that.


    Posted by womensspace | January 14, 2007, 9:58 pm
  203. Also, Mary got really aggravated when I didn’t approve posts, she thought, early on, didn’t she? I shouldn’t have approved them at all.


    Posted by womensspace | January 14, 2007, 10:00 pm
  204. From now on, I’m going with my gut. If I smell “troll” or someone being disingenuous in any way in their posts, I’m spamming them. Even if they do get all mad and attack me on their own blog or whatever. None of us has time to play tiddlywinks with anti-woman trolls.


    Posted by womensspace | January 14, 2007, 10:02 pm
  205. Yay, heart!

    Posted by Mary Sunshine | January 14, 2007, 10:20 pm
  206. Pony gets it right again. How does she do that? But Heart your responses to Mary really made me see it clearly. The twisting of what you actually said into something you did not say. Isn’t that the way of the patriarchy. Always a diversion, a slick trick up their sleeves. Good to know.

    Posted by rhondda | January 14, 2007, 11:11 pm
  207. My mom always used to tell us she had eyes in the back of her head. So does pony. 😛 Thanks, Mary!

    Yeah, Rhondda, patriarchy is a big ol’ liar that unfortunately believes its own lies, like all abusers. Ugh.


    Posted by womensspace | January 14, 2007, 11:19 pm
  208. Rhondda, I only wish. 😉

    Posted by Pony | January 14, 2007, 11:38 pm
  209. I just finally went and made a video partly in response to this situation: In My Language. It gets into the language that’s both easier and more natural to me than any sort of words, and then gives a loose translation or at least an explanation. It’s meant to challenge the idea that there’s only one valid kind of thought, communication, interaction, language, personhood, intellect, etc., and that anyone who doesn’t measure up to that particular standard is presumed not to have any of these things, even not to be a person.

    I don’t directly address Ashley X except in the dedication, but people in her position are among the many different sorts of people the video is about. Likewise, I didn’t directly address “mental age” as a construct, but it’s one of the ones thrown at people whose thinking works sufficiently differently. That a person who has a different so-called “mental age” actually has an entirely different system of understanding the world that incorporates years of experience with that way of understanding the world, far different from a typical person who really is that age, is lost on a lot of people because of the fact that mental age is a pretty misleading analogy to use on people’s thought processes.

    Posted by Ballastexistenz | January 15, 2007, 12:47 pm
  210. Ballastexistenz, That is a great video. Your message regarding thought, how it is normalized, and what is respected is very important, and in my opinion, it is clear to understand the expanse of thought and interaction in this world, without limits.

    I don’t think that I have ever seen a more clear message regarding ‘thought’, understanding,communication and how we move about in this world.

    Thank you for posting the link.

    Posted by uppitybiscuit | January 15, 2007, 2:31 pm
  211. I too thank you Ballastexistenz, for having the patience and willingness to teach us.

    Posted by Pony | January 15, 2007, 3:15 pm
  212. I wanted to close my participation in the argumentative discussion here with members of Alas’ blog community. I stand by my statements as posted here. I reject society’s iconization of disabled persons (native people, women etc).

    I also reject the idea that women who call themselves feminists should be given a pass for blogging with a porn pusher, defacto selling porn then themselves. I don’t fault women for their role anymore than I fault disabled persons or native people for how they are viewed and used by society, but I won’t condone the users, the ones who build the icons while debasing and othering the people. Alas is up for a Koufax, and one, at least, with his disability blogging being held up as reason.

    Alas a blog is a porn site. Plain and simple. If you blog there, or post there you are increasing pornography use, increasing the debasement and dehumanization of women. There’s just no excuse.

    I too wish the women blogging there, who FAR outstrip the blog owner in ability and writing, would stop helping to destroy their sisters.

    Posted by Pony | January 15, 2007, 4:33 pm
  213. Amazing! I have learned *so* much from this thread. Thanks to everybody but especially Ballastexistenz!

    Posted by Branjor | January 15, 2007, 5:16 pm
  214. So nice to be amongst (some) sensible women.

    Came back after starting back at work and scrolled through with various responses from moral outrage to sheer disbelief, to a round of applause. Pony, you’re exactly right about the guitar:)

    The blog by dreammom is probably the best comment on the entire sad Ashley story to date. Should have also clarified that I also work with people with disabilities, as well as being ‘one of the group’ myself – I still have a problem with differing between disabled and non-disabled, although I recognise what you are saying about ‘official’ disabledom. However, in Australia our disability services are getting a whole lot better, as is the criteria for assessment. The dreammom blog sounds like the voice of so many mums I have met of children and adults (I work as DLO in a postsecondary institution) – just inspirational people who are motivated solely by love.

    It frightens me a little that a person of Mary’s obvious intellect can write so dispassionately about an issue which should speak deeply to all of us as being wrong, for many many reasons. And in answer to her question about why I wouldnt think that Ashley’s parents had genetic testing completed on their daughter prior to commencing the surgery – how ridiculous. They would have trotted it out as a justification at the first possible opportunity, rather than ‘it will decrease her chances of being sexually assaulted’ or ‘the straps on her chair distress her’. That is complete and utter bollocks, and I refuse to give that particular argument any weight. There are many types of chair straps, or sheepskin covers to soften them – the ‘necessary frequent examinations’ to breasts are carried out post-forty if there is no direct genetic diagnosis (and I firmly believe there is not) and as for removing breasts because they are cumbersome; that is the worst justification I have ever heard. Just because her mother has large-ish breasts it does not mean that Ashley will have.

    ‘One Flew Over The Cuckoo’s Nest’ was on the box the other night – this is what the whole thing feels like to me, creating a convenience meal out of a person because it is easier. The medical professionals who condoned this outrage should be disbarred from the medical profession.

    The whole thing makes me heartsick.

    Posted by Samantha | January 15, 2007, 10:01 pm
  215. Yes. Disbarred. However it’s endemic. In recent vomitous medical news, a woman who is desperate to have a child is having a uterus transplant. See Sparkle*Matrix blog.

    Posted by Pony | January 15, 2007, 10:50 pm
  216. Did anyone see this movie? Mutilation of women as control mechanism.

    Posted by Pony | January 15, 2007, 10:54 pm
  217. The video is great, Ballastexistenz! And thanks for the reference to Boxing Helena, Pony.

    Posted by profacero | January 16, 2007, 5:35 am
  218. P.S. so I went and read Sparkle*Matrix on the uterus transplant. Unbelievable, it’s going to be a uterus transplant, then IVF, then a Cesarean, then a hysterectomy. All of this so she can have a child “of her [or more importantly, I guess, his] own,” since the uterus has “such great symbolic value.”

    Posted by profacero | January 16, 2007, 5:44 am
  219. Ballastexistenz, I just watched your video. I cannot begin to describe how powerfully moving it was to me, inspiring, instructive. I have been a national leader in the homeschooling/unschooling/alternative education/natural parenting/noncoercive parenting movements in the U.S. I am going to be forwarding the link to your video to as many point persons in these movements as I can.

    How incredibly powerful. Go YOU. I am so glad to have met you online. You have a message the entire world needs desperately to hear.


    Posted by womensspace | January 17, 2007, 5:31 am
  220. This is relevant to this thread, as it talks about this man’s desperation to save his testicles when he was told tests indicated he might have cancer. Note the concern, the bending over backwards, the contortions. TO SAVE HIS MANHOOD. And note please, this story did not come from some scummy Brit tabloid, but one of the most respected newspapers in the English language.

    Posted by Pony | January 17, 2007, 10:14 pm
  221. Not to mention, it was just ONE of his testicles they wanted to remove. But women’s reproductive organs, breasts, even if they’re healthy, oh well, you won’t miss them.


    Posted by womensspace | January 17, 2007, 10:17 pm
  222. The word: tackle. What is it normally associated with? Football, to tackle and bring down; fishing, the bait and lures used to attract and catch a fish.

    Posted by Pony | January 17, 2007, 10:28 pm
  223. I’ve been trying to stay out of this debate, but it seems like people are arguing about ‘theoretical’ Ashley without having much idea of the difficulties of care for a severely cognitively disabled adult. I think that the ethics team based their decision on what would interfere least with Ashley’s relative pleasure from life (such as she is able to take) AND what would cause the least amount of suffering. Let me give a couple of examples, for comparison.

    My stepmom just retired from teaching severely cognitively disabled or moderately CDB and otherwise disabled children. She had a female student who was autistic; she was really quite intelligent but she couldn’t communicate what she needed. This girl started to get migraines with her periods and would headbang/freak out due to the pain. Unfortunately, the caregivers didn’t figure out what was going on for a long time, and the girl suffered a lot because of it. When she got on the Pill and on migraine medication, her headbanging (her only expression of suffering) stopped. Ashley can’t head-bang. How will she communicate that she is suffering? And, how can one quantify how many years of cramps are worse than a hysterectomy?

    My stepmom also had a moderately retarded female student whose parents wanted to have her tubes tied. They were worried that she would get pregnant. This young woman was interested in boys and sex, and her parents felt that it was more wrong for them to constantly watch her and not allow her to be alone with young men than to have her tubes tied and allow her to have a dignified sex life as an adult. She could not tolerate the Pill/Depo Provera and dug out Norplant. Her parents were unable to get consent from an ethics board to have her tubes tied, so now she must be chaperoned when she’s with ‘boys’ she likes. I think it interferes more with her life to be chaperoned and unable to be a sexual being than it would have for her to have her tubes tied and be able to be sexual.

    From a medical perspective, it’s less complicated to treat a patient who can not communicate who has had a hysterectomy than trying to treat the same patient with hormonal birth control methods, which can cause increased risk of blood clots, especially if one is immobile. Ashley had a major surgery, but it was before puberty and will likely cause her less suffering than having the terrible cramps one often has as a teenager. In my opinion, it’s better for her not to need breast and gynecological exams. They are upsetting to some of us who understand what’s going on!

    ON THE OTHER HAND, I thought it was completely creepy that the parents argued that removing Ashley’s breast buds ‘desexualized’ her and made it less likely that she would be molested or raped. We all know that children, who lack adult secondary sexual characteristics, are raped, and that rape is not about sexual attraction but about power. Yet, I did understand that her developing breasts were already uncomfortable, and that they expected Ashley to have large, fibrotic breasts and a family possibility of breast cancer. At Ashley’s young age, removal of her breast buds/ milk glands was a very minor surgery that prevented those likely problems.

    MY GREATEST CONCERN is that “the Ashley treatment” is starting down a slippery slope, making it more acceptable to modify disabled people’s bodies without real benefit for the disabled person. That is a truly horrifying prospect.

    I have given this a lot of thought. I am a disabled woman who has had many medical procedures and treatments during childhood/teenage years. I would not have consented to all of these procedures and treatments, and I think they were allowed because my parents did not think of me as a sexual being or a real person. (They still don’t. My grandma was surprised to learn that I had not gotten my tubes tied. How offensive!!)

    I also read everything I could find about Ashley’s case (scores of pages); I have a considerable medical background which is probably helpful (or prejudicial); and I really do think the ethics board and her parents had Ashley’s best interest in mind.

    Coming back to the “slippery slope:” if ‘the Ashley treatment’ became accepted, one would have to rely on the medical institution’s ability to evaluate each and every case appropriately. As a person who was ‘supposed to be mentally retarded’ and never do anything with my life, I find that very frightening. (My apologies, this is what I was told as a small child so this is how I’m writing it.) The institution has failed before and will fail again. But what is the worst harm?

    Best wishes and respect to all.

    Posted by Harpy | January 18, 2007, 12:49 am
  224. Harpy I get your point and I, for one, admit I’m talking about the theoretical Ashley. I don’t know for sure which conclusions I’d draw if I were in the actual situation and knew more than I know now (although I think I know what I’d think, but still).

    But I don’t think it’s a bad thing to talk about the theoretical Ashley: one of the most interesting aspects of this whole event has been seeing what sorts of of things get done in cases like these, what assumptions are made, in what terms decisions are justified, and so on. It’s illuminating, broadens perspectives, teaches new ways to think about these issues, what to consider.

    Slippery slope, yes indeed.

    Posted by profacero | January 18, 2007, 7:27 am
  225. This is being considered as a treatment protocol. It’s been written up in a medical journal with that in mind, the first step. It must be talked about theoretically. No one can change what has happened with Ashley, but maybe we can stop this from happening to some other little….


    Posted by Pony | January 18, 2007, 7:31 am
  226. You are both quite correct; there’s nothing wrong with talking about theory; that’s how policy decisions get made. I’ve read the journal articles that discuss the potential “Ashley treatment”. My greatest concern is that we are starting down a slope of disregard for disabled people. Ashley is at one end of the extreme. It’s easier to decide to keep her small/ desexualize her. And no, she’s not ever going to know or regret it. But what about people who aren’t at the extreme?

    My sister violently disagrees with me about this topic. She had a hysterectomy and says that it’s very painful, and that this is a major surgery being performed on a person who can’t understand the pain. And, she’s got a point.

    Posted by Harpy | January 18, 2007, 12:09 pm
  227. Word, Harpy. I have a friend whose 18-year-old son is mentally stuck at about age three. He is otherwise healthy, mobile, dextrous, and strong. He is also 6’4″ and 240 lbs. and can be very violent and destructive when he has a temper tantrum. She told me the other day that she wishes the Ashley treatment had been available 10 years ago. When I expressed my surprise at her statement, she told me that if she had been given the choice between respecting his right to bodily integrity and giving him the Ashley treatment even without his consent, she would have chosen the Ashley treatment, because so many of the stresses and worries she has had to deal with on a daily basis would have been alleviated. She worries all the time about the possibility that he could rape or otherwise seriously injure someone, that he could be seriously injured because nobody at home is big enough to pull him out of danger, that he could start a house fire when he punches through a wall (which apparently is one thing he does on a regular basis), and so on. So I think the slippery slope argument is a valid one – can we trust that in a few years, people like my friend’s son will NOT be given drugs to stunt their growth and desexualize them? While I think Ashley’s parents were honestly trying to make the best decision they could, and I sincerely hope that all turns out well for Ashley in the end, I also think that there is a nonzero likelihood that the caretaker’s quality of life will assume a greater importance than that of the person being cared for, especially since the Ashley treatment is cheaper and less resource-intensive than proper respite and supplementary care would be.

    Posted by Original Lee | January 18, 2007, 8:00 pm
  228. I didn’t mean “otherwise” in my 3rd sentence to imply that he is mentally ill. That was an ablist statement, and I apologize.

    Posted by Original Lee | January 18, 2007, 8:02 pm
  229. I didn’t pick that up, or take it that way. No worries.

    Posted by Harpy | January 19, 2007, 2:23 am
  230. CounterPunch has a long impassioned “Protest From A Bad Cripple” about this slippery slope by a male disabled activist, William Peace.

    The Ashley Treatment and the Making of a Pillow Angel

    Her parents sought out this extreme treatment because they had the best interests of their daughter in mind. If I have learned one thing in my life as a disabled person it is that when someone has my “best interests in mind” I am in very big trouble.

    Let me be blunt: the so-called “Ashley Treatment” is morally reprehensible. All involved in the extreme treatment she was subjected to have been caught playing God. The “Ashley Treatment” affects not just one girl in Seattle but all people—those with and without a disability. Doctors have established a precedent with Ashley—it is ethically and socially acceptable to mutilate the bodies of disabled people.

    Posted by Aletha | January 19, 2007, 5:17 am
  231. Yes, it does establish a precedent. However, if it decreased Ashley’s suffering (from a medical standpoint, I think it does), and increased her mobility and time spent with her parents, can we ethically say that ‘the Ashley treatment’ should not have taken place because it set a dangerous precedent?

    I, myself, don’t know how to answer that question.

    Posted by Harpy | January 20, 2007, 3:57 am
  232. My problem is that by all accounts, Ashley was *not* ‘suffering’. If someone is suffering, then consider surgical/medical intervention. She was a healthy young person. I have no doubt that in some cases, euthanasia would be entirely appropriate (for some terminal patients) – yet the debate on euthanasia rages on. Why, then, is a disabled child’s human rights valued so little that the debate rages on *after* the event?

    Ashley’s personal needs aside – this is a larger issue.

    Posted by Samantha | January 20, 2007, 12:22 pm
  233. Something I was thinking about– a while ago, somewhere on my blog, I think I blogged about the practice of “breast ironing,” which I was reminded of yesterday reading Hijabi Madness. That’s where the breasts of young girls in puberty are “ironed,” “flattened,” by their mothers in basically brutal ways with the idea that this will protect them from sexual assault. Interesting the horrified reaction to this practice in comparison with what has been done to Ashley, which is THE SAME THING. Dear god at some point the mind boggles. Why is the practice of “breast ironing” just fine and dandy when it is rich white men who are doing it, and getting money for doing it?


    Posted by womensspace | January 20, 2007, 5:04 pm
  234. Here’s the article on breast ironing from Hijabi Madness.


    Posted by womensspace | January 20, 2007, 5:32 pm
  235. Ditto binding of Chinese girls feet in the past; ditto female genital mutilation. Our outrage is because so called ‘normal’ children are suffering these practices.

    If rights are inalienable, they exist whether the person is aware of them or not.

    “The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby” – Ashley’s parents.

    Disability is groteque. Fantastic. Human rights are fine and dandy if they are for the ‘normal’ population – the ‘non-grotesque’. As a person with a disability, I am so freaking pissed about this issue I could SPIT.

    Posted by Samantha | January 21, 2007, 8:41 am
  236. The following quote is direct from Ashley’s parents’ blog and I’ve explored this issue further on the Planet of the Blind…

    “The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”

    Is it just me? Does anyone else out there find this sentence, coming from “a member of the Board of Directors for the Institute for Ethics and Emerging Technologies” particularly offensive? Unprofessional perhaps? George Dvorsky considers a full-grown and fertile woman with the mind of a baby grotesque? I’d like to know: just what is grotesque about this? Would a woman who requires the level of care Ashley requires be less “grotesque” if she had the mind of a two year old? Or an eight year old? Twenty? Forty-five? See where I’m going with this? At what age, or at what IQ, are people with disabilities who require the level of care that Ashley does no longer considered grotesque in George Dvorsky’s opinion? I’d like to know where he draws the line.

    Posted by Connie | January 23, 2007, 11:54 pm
  237. hola vi hace poco por tv,la historia de tu niña,realmente me parecio conmovedora,en un primer momento me parecio que lo que le estaban haciendo era moustroso,pero de a poco fui interirisandome y llegue la a entender que todo lo que estaban haciendo era por el bienestar de la pequeña. que dios los proteja y jamas los desampare.tengo ocho hijos y haria lo que fuese necesario por el bien de ellos,desde ya les deseo la mejor de las suertes,cariños y besitos en especial para Ashley

    Posted by patricia avila | January 24, 2007, 3:47 am
  238. Could someone translate? Profacero?

    Not to continually bother you to translate….


    Posted by womensspace | January 24, 2007, 5:42 am
  239. This will probably be fairly inaccurate as I am an Aussie and my Spanish is rusty to say the least. (I learned some Spanish whilst living in Africa – go figure!) If anyone wants to correct me feel free.

    Saying hello, saw the history of this girl on TV which really stirred her and seemed touching, at first I thought what they were doing was monstrous but little by little …something…what the hell is interirisandome? to understand that everything they were doing was for the wellbeing of small children that God protects. She has eight sons and would do what is necessary for their own good. She wishes her the best luck and ‘affections and little kisses’ specially for Ashley.

    Nice post although I have six kids and I disagree.

    Dodgy Spanish translation service!

    I consider George Dvorsky grotesque. Call himself an ethicist. Bah.

    Posted by Samantha | January 24, 2007, 1:11 pm
  240. “Board of Directors for the Institute for Ethics and Emerging Technologies”

    This is an oxymoron.

    George Dvorsky sits on the board of…oh wait an organization made up of George and several (give or take a few, counting the ones already cryonicized) other empathically challenged computer geeks. The name of George’s organization is longer than the membership list.

    Nothing to see here, move along.

    Posted by Incorrigible | January 24, 2007, 1:50 pm
  241. Whaddya know, ol’ George wrote back.

    Is that by way of an almost ‘shit I shouldnt have done that..’?

    I was looking at the famous George’s blog and noting that there was just one or two very positive (pro Ashley ‘treatment’) I wrote back as below; surprised to see it up there and also to get a response from George Dvorsky.

    Samantha said…
    I notice that the ‘posts on this blog overwhelmingly’ have probably been moderated, and suggest that the opinions that people have voiced are probably negative and therefore are not aired.

    I am the parent of two children with disability and I disagree entirely that dignity and human rights are dependent on cognition or awareness. I feel for parents of children with disability but not as much as I feel for the children themselves. Your comment about the inappropriateness of Ashley’s cognition in relation to her body was inexcusable and a grievious slight to all persons with disability.

    I suppose I am writing to myself, as I doubt this comment will be ‘moderated’.


    8:51 AM

    George said…
    Hi Samantha,

    Thank you for raising the issue of moderation. FYI, I moderate the comments section of this site to prevent spam. So long as the comment is contextually appropriate, unabusive and non-trolling, it most certainly will get posted. I treat the comments section very seriously and feel it serves an important purpose, namely that of a public forum.

    If, btw, you’re finding that most posts are sympathetic to my perspective, please keep in mind that it may be a selection effect (ie my site draws a certain readership) and that recent polls are showing as much as a 60% approval rating for the ‘Ashley Treatment.’

    As for my remark about “the inappropriateness of Ashley’s cognition in relation to her body,” I am becoming increasingly sympathetic to this criticism. As an advocate of neurodiversity and morphological freedoms, I believe no one should prescribe a certain body to fit with a certain mind.

    That said, the purpose of the comment was purely intended to add some perspective and relativity to Ashley’s condition. Given another opportunity, I most certainly would have worded it better.

    Posted by Samantha | January 25, 2007, 11:52 am
  242. My daughter has similar global delays and I am considering “bypass” surgery for her, too. It really isn’t anyone’s business, either.

    Those of you sitting in judgement, do this. For one whole month instead of using a toilet, wear diapers and ask someone to change them for you. For one whole month, carry a 70 pound bag of potatoes everywhere you go. This is just the tip of the iceburg for parents like me with children.

    This surgery is the Window that God opens when all the other doors have been shut in our faces. This is the canoe in the joke about the person waiting on his roof for God to rescue him.

    Posted by Dee Hansen | January 26, 2007, 10:25 pm
  243. I finally read the article you linked to up there, Aletha, by William Peace. What a fine article! Thanks for linking to it. I am going to link to it again right now– it’s very very worth reading for all who are committed to human and civil rights for all people.

    One section of the article has my wheels turning re these many convergences. I’m going to comment on it in the “I am a Monster” thread. Thanks so much again for linking to it, Aletha.


    Posted by womensspace | January 27, 2007, 4:24 pm
  244. Why isn’t it “mutilation” when we carve up our kids backs to put rods or mini bridges to correct scoliosis or break jaws to correct the alignment in their bites or tubes for ears or artificial knee joints? Nobody ever died directly from scoliosis or back injury or misalined jaws or ear infection or weak knees. Sure, it’s painful and life altering but nobody ever questions a parent about “barbaric” procedures to make corrections through surgery because this is what we expect from the medical profession.

    Like Ashley’s parents, I’ve been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. I can’t imagine Elisabeth missing out on our annual backpacking adventures up the mountains when she reaches her maturation point in height or weight. I can’t imagine her lying on the floor or in a wheelchair as an adult because she’s too heavy to lift or transport into kyak or canoe or horse. I can’t imagine her going through life without having the same opportunties of her siblings and peers. It would kill her to be restricted to a wheelchair or in supine position all her life.

    I don’t understand why is everyone against using medical breakthroughs for people if it will enhance their quality of life? As for using these same procedures so that parents can better assist their child, I don’t see anything wrong here either. Go ahead and talk about what is “ethical” and what is “dignity” after wearing a diaper instead of using a toilet for one whole month relying on everyone else except yourself to change it. Go ahead and talk about what is “ethical” and what is “dignity” after tightly binding your body in a burlap bag having to rely on others to take care of you.

    It’s easy when they are young, but what about when our kids are 30? It’s not like we’re experimenting on our kids. People are blowing this “ethics” and “dignity” out of proportion and shoving their value systems and religion down our throats so much that they are actually interfering with progress. Most of the time, our kids are invisible to people. It is only when their disability becomes the focus that they are visible to others. And most times, what people see is what we dont’ want them to see — on object of pity.

    Instead of people looking at our kid’s emerging abilities, the focus is alway what they can’t do which is often times used as the basis for planning their life instead of letting the parents and advocates having control. Develop a plan for kids based on what they can’t do? This makes sense? Do we tell kids they can’t play baseball because when they are 4 they can’t hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability.

    Here’s my analogy. Let’s say typical children are like apples growing on limbs from trees and our children are like carrots. The common need is light, nutrients, and water. The conflict arises for the carrot because the tree blocks out the light and zaps the water and nuturients. We wouldn’t cut down the tree or let the carrots die from neglect, would we? But when the people who care for the apple trees try to tell the carrot growers what to do, this is wrong. We need to work together instead of working against each other.

    Posted by Elisabeth's Mom | January 28, 2007, 8:46 pm
  245. I think it is mutilation, but in some FEW instances it allows them to continue growing and maturing to adulthood and full productive lives. That’s not the case at all with Ashley.

    “Why isn’t it “mutilation” when we carve up our kids backs to put rods or mini bridges to correct scoliosis or break jaws to correct the alignment in their bites or tubes for ears or artificial knee joints?”

    Posted by Pony | January 29, 2007, 1:31 am
  246. I was merely making a point about we attach our personal value system to our word choices. Personally I don’t see where “allows them to continue growing and maturing to adulthood and full productive lives” has any meaning for a family with a child with severe global delays which is why Ashley’s family headed in the direction they did.

    Posted by Elisabeth's Mom | January 29, 2007, 3:03 am
  247. Here’s my analogy. Let’s say typical children are like apples growing on limbs from trees and our children are like carrots. The common need is light, nutrients, and water. The conflict arises for the carrot because the tree blocks out the light and zaps the water and nuturients. We wouldn’t cut down the tree or let the carrots die from neglect, would we? But when the people who care for the apple trees try to tell the carrot growers what to do, this is wrong. We need to work together instead of working against each other.

    Bad analogy.

    I think you are missing the point that we are arguing against the removal of *healthy* body parts. If you are comparing the tree to – what, Ashley’s uterus or breast buds? – you are incorrect. Ashley’s healthy uterus or breast buds did not significantly upon her care or future care. And describing this as a ‘medical breakthough’ isnt valid. Removing a child’s healthy organs and chunking her full of estrogen can hardly be considered a breakthrough.

    I truly believe that the so called ‘treatment’ would make the lives of people caring for people with disabilities a lot easier, and would give them quality of life, and also perhaps give the person a few more opportunities to engage in life. BUT when the person cannot give consent – when the risks outweigh the benefits – when we are at danger of letting the medical profession experiment on people with disabilities like labrats – is it worth it? I’m sorry, I think not.

    It isnt us and them, Elizabeth. We are all parents of children. My autistic child is your child with developmental disability is incorrigable’s neurotypical child. Are you arguing that changing diapers and participating in 24 hour care on your behalf should make a difference? It should not. The primarily important factor should be the humanity of your child, and the right for them to be recognised as such.

    I imagine when Pony said this “allows them to continue growing and maturing to adulthood and full productive lives” she was talking about sustaining life, or life without pain. We are not talking about correcting some ailment or injury here – if they could repair Ashley’s damaged cortex, I am sure they would do so. We are talking about something entirely different – surgery for convenience.

    Posted by sam | January 29, 2007, 11:56 pm
  248. Sam … It is really hard not to respond emotionally which accounts for my ranting and venting … I can write a book about some the stupid things I’ve blurted out.

    I agree wholeheartedly about the primary factor stated in your comment but when our society creates barriers and restrictions so she can not exercise her right to be human, what then?

    Is Ashley the issue here or it is the society that did not allow her to be who she is?

    Ashely fell under the radar because in our society, she never existed until her “disability” became the issue which is why everyone wants to take ownership of her now. But we don’t own her, do we? Because if we really want to own her then we have to take responsibility for the reasons why her parents did what they thought was best for their child.

    Thanks for listening and taking account for my own frustrations.

    Posted by Elisabeth's Mom | January 30, 2007, 4:58 pm
  249. “Why isn’t it “mutilation” when we carve up our kids backs to put rods or mini bridges to correct scoliosis or break jaws to correct the alignment in their bites or tubes for ears or artificial knee joints?”

    Sometimes it is. I have a friend whose scoliosis really would have killed her if she hadn’t had a rod put in her spine. But that rod causes serious complications, she now has something called flatback syndrome that’s excruciatingly painful and will only get worse. She’s perfectly willing to have paid that price, since she’s now alive and not dead, but it is a price.

    She says she’s really disturbed by the people who do this to their children whose scoliosis is not severe enough to kill them. Because it’s one thing when it’s a lifesaving measure, but another thing entirely when it’s done to people who would have survived anyway.

    Posted by Ballastexistenz | February 4, 2007, 7:22 pm
  250. f.y.i., a similar case has just arisen:

    a mother in britain is seeking a hysterectomy for her 15-year old daughter, who has cerebral palsy, to prevent the girl from “feeling the pain and discomfort of menstruation.”

    Posted by ladoctorita | October 8, 2007, 6:21 pm


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