A friendly barfight.

1. sharon Says: January 5th, 2007 at 6:25

   You agree with what happened to this child and say;
   “People are upset about a family taking real steps to deal with a staggering disability where, at nine years of age, she has the mind of a three-month-old and will never be able to decide whether or not to have children, fall in love, or have a family.”

   I have a child with a disability and one of the most important things I have discovered since having him, is the issue of disability activism. Disabled people, whether they have physical or learning disabilities, need to have their full human rights respected. What has happened here is a shocking abuse of a child’s rights. This is sexist and disablist. Why remove her breasts to improve her comfort; wouldn’t it be better to seek better chair design? Why perform a hysterectomy, because ‘after all, she won’t be needing a uterus anyway’; she won’t be using her legs either, should they be removed too? The desexualisation of this child is abhorrent. You believe it’s OK because her parents want to look after her, and she’s only got the ‘mind of a 3 month old’. But what does that statement mean? She performs in some IQ test at a level equivalent to a 3 month old. She isn’t a 3 month old, she never again will be. She is a 9 year old with a different functioning mind, not a baby. A person’s human rights should not depend on their intellectual functioning. Would it be OK to mutilate someone with the same physical functioning as Ashley, but an IQ within the normal range and if not, why not?
   I have said that the parents deserve access to support and enabling technology to help them as a family; this however is not the way. Listen to what disabled people have to say on this issue.

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2. StealthBadger Says: January 5th, 2007 at 8:29

   My grandfather lost both legs just above the knee in a railway accident when he was a young man. Through several of my friends, I’ve learned a great deal about the lives of autistic and disabled children, how they are different from us, and similar in their humanity. What I have also learned is that there really are some who have run into a developmental wall, and whose expression does not flower in alternate ways. Enough said.

   What I have also learned is that first, you can not easily second guess the people who are there facing this; they have experience with this human being you do not. Yes, there needs to be legal oversight to prevent abuse, I’ll agree with that – there was oversight in this case.

   Let’s look at her current level of functioning:

   A rare brain condition with no known cause, it means she will never be able to walk, talk, swallow food or even hold her head up or roll over.

   Despite the bleak prognosis her parents determined to care for their first-born daughter at home, adapting a double baby-buggy to wheel her from room to room and creating a space where she can look at special lights and colourful displays.

   By the age of six and by now enrolled in a special school, she was still unable to function beyond the level of a baby and spent most of her time lying on her back kicking her legs and arms, or watching television.

   She was totally reliant on her parents for every physical need, from being turned over to having a ticklish hair removed from her face.

   What puzzles me is that you say they have “desexualized” the child, when what they’ve done is prevented her from being able to reproduce. The two are not identical. No, I do not believe it would be OK to “mutilate” a person of higher mental functioning against their will. First of all, any procedure like this is about as “ok” as abortion (which means that there is never a good choice, and sometimes only awful ones, but sometimes intervention is the correct choice, and no-one outside of the people directly involved should have the final authority over it). Second, more than the body, it is our minds that make us human, not our bodies. not in the ability to write words or paint pretty pictures, but our sense of self and others (and if you feel this is not an appropriate line to draw, then please tell me, is an insanity plea valid? How about a judgement of non compos mentis? If not, why not?).

   The mind is all we really are – again, not in our response to an IQ test, but in our ability to understand self and other, past, present, and future, and to use our memory and imagination. Yes, it’s all well and good to campaign for better support and financing for the disabled… but that family has to live with it the current funding structure right now, for a minimum of two years – a MINIMUM. If, on the advice of the review board who examined her case, they feel this is the best way to keep her entire family together and sane while making her life the best they possibly can, then I believe it is their decision to make. Would I make the same decision in their case? I would want to know as much about the person whose fate I would be deciding as they know about her.

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3. sharon Says: January 5th, 2007 at 10:58

   Thanks for your reply to my comment. I forgot to say, I don’t think I was twisting the facts in my post, just examining the ethical issues.

   I do understand the difficulties the family face; I really think that applying for a hoist would have been better for the child. In the parents blog, they say that if she were any larger, 2 people or a hoist would be needed to lift her, but they don’t discuss what they have against the idea of using a hoist.

   I use the expression ‘desexualising’ because she has had her uterus and emerging breasts removed. If they were concerned about preventing pregnancy; contraceptive pills or even an implant would be less invasive and just as effective. The idea that menstruation would cause her distress doesn’t seem true when it is stressed elsewhere how little awareness she has. She is no more likely to be distressed about bleeding than about any other bodily discharge. It appears that the parents have extreme ways of protecting her from potential abuse; removing her breasts. I don’t see why the female body needs to be shaped to make it less susceptible to abuse.

   The mind is what makes us, but I know from my experience with autism issues that autistic people are regularly described as having ‘no theory of mind’ or ‘lost in their own world’ or being ‘an empty shell’ and talked about or treated in dehumanising ways. I would disagree that a person has to prove their worth in order to save themselves from such treatment. People who are, or appear to be, of lower mental functioning need representation too. There is a concept in autistic advocacy of neurodiversity meaning that people who’s minds function in way different from the norm; ie autistic, schizophrenic, learning disabled, etc, deserve respect, protection and to have their needs met.

   (wrt your question about legal issues and culpability, of course people need to be judged in light of their understanding of their actions.)

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4. StealthBadger Says: January 5th, 2007 at 19:03

   Thank you for your well-considered reply. The “twisting” allegation was based on the fact that in your original post, I do not believe you touched upon her mental functioning. This is a crucial detail for any reader, whether as a possible mitigating factor or otherwise. I believe that the Schaivo case is about as illustrative as you can find, since this class of neurological “artifacts” is not grown out of – it becomes a fixed feature of the person’s life much as the length of their bones once their growth is terminated (either naturally or artificially).

   Yes, I believe in the idea of neurodiversity, which is why I set the measure for what makes people “human” in such terms that some of those critters we consider “animals” could quite comfortably fall beneath it:
   “…our ability to understand self and other, past, present, and future, and to use our memory and imagination.” I very much believe that it is within our abilities to learn more about what people see, feel, and respond to as individuals, and it is far more our obligation to learn about than finding new ways to build bigger bombs.

   These choices will always be difficult ones, but we have the ability to do better, to know more, and to understand more about who and what we are in all our isolated mental diversity. It will never be a casual decision – but we can do better, and I look forward to a day when these decisions are made based more on knowledge of what the other person is experiencing, rather than the fragile judgment of our intuition.

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5. nikristai Says: January 6th, 2007 at 0:48

   First, As Badger knows, I have a child who is diagnosed with severe autism. Secondly, I work with disabled kids ranging from Angelmans syndrome to Cerbal Palsy, Fragile X Syndrome, Every Autism Spectrum Disorder there is, Bi-polar, OCD and Tourettes, ect. Specials needs children are my WHOLE life literally. My Angelmans boy is in fact not a boy, but physically and chronologically a man … He is 21 years old. He functions at about 9 months old. So I have experience and understanding where these children are concerned, not only on a personal level, but on a professional level also.

   I can not say for sure that I believe going to this extreme is needed because as sharon said … the parents had other options, more difficult options, but they were other options none the less.

   However, I can say this … We should NOT be judging these parents for what they have decided. I am all for advocating and getting the Neurotypical world to better understand the REAL truth about children with disablities. The fact of the matter is though … These parents are doing what they believe is best for thier child. This decision of thiers is coming from a place of love and caring (at least in my not so humble opinion).

   Something I have learned from being a parent of a disabled child and from working with these children is that none of us (even me having my own special lil’ guy) … Not one of us can know the EXACT situation of another persons life.

   I can say I would not do this to my child, but I do completly understand why these parents did and do not judge them at all.

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6. Sharon Says: January 6th, 2007 at 10:38

   You’re right, I didn’t mention her ‘3 month’ age equivalence in my post, although I named her condition and described her functioning. I hadn’t meant to leave that out, I really didn’t apply as much significance to it as others have. But I see what you mean.

   I’d agree with you all the way when you say;
   “I very much believe that it is within our abilities to learn more about what people see, feel, and respond to as individuals, and it is far more our obligation to learn about than finding new ways to build bigger bombs.”
   I’d like permission to use that sentence myself sometime!

   Nikristai, hi! I’m a total novice at disability advocacy, my son is only 6 so I respect your opinion and years of dealing with these issues. But I have several concerns about what these parents have done. Apart from what I’ve already mentioned in my comments, there’s the fact that they consider this to be a pioneering treatment, that other will want to copy them and that’s why they’ve coined the name ‘Ashley treatment’ to make it easy for others to remember and find out about. It would probably be cheaper for providers of services to disabled people if more parents opted for this surgery and hormone treatment than it would be to provide adequate technological and personnel support.
   I don’t often blog about ‘issues’ but about my family life (so deadly boring to most people) but I was very worried about how people were discussing this and missing out, I think, the real sexist and disablist aspects of what happened.

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7. nikristai Says: January 6th, 2007 at 21:25

   I’ve only been advocating for special needs children for about 3 years. So *smiles* not that many years of experience. My son is 5 … the Angelmans “boy” isn’t MINE really *laughs* Although, I do love him dearly … His mom is such a wonderful advocate and has taught me SO much.

   I really am of two minds about this whole situation, because I would NOT do this for my child … (even if He was a She with a disablity). However, I can see where parents would want this as an option … I can sympathize with where they are coming from. I guess for me I just have always felt it is not my place to ever judge another for thier actions.

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8. StealthBadger Says: January 7th, 2007 at 19:54

   Don’t mind at all if you use that, Sharon. *points to the Creative Commons license at the bottom of the page*

   Seriously, I have a great deal of difficulty with our current body image being tied to an ideal, let alone it being used as a measure of well-being when that ideal can not be approached.

   It kinda troubles me that this debate ties sex to the uterus and breasts and calling it de-sexing her, when the actual thing that might block sexual identity is not the removal of the uterus, but the removal of the ovaries to prevent the development of sexual identity in the first place. It seems like you’re making arguments that have disturbing consequences when applied elsewhere… let’s look at it this way – were the castrati men? *gets distracted poking around the internets reading about Amazons*

   Anywho. Next, the big question: how do we know that she’s only at the mental functioning of a three-year-old? I agree with you, we don’t, and I agree with you that we need more funds for the disabled.

   I don’t know what’s happening in Ireland, but the problem in the States is that after four straight years of unilateral GOP rule, they’ve achieved their goal: there is no longer enough money for social programs without: 1. cutting down what was charmingly called the military-industrial complex, which would involve taking on the greatest accumulation of wealth and power the world has ever known, and 2. raising taxes to absurd levels, while keeping the wealthy from appropriating the lion’s share of it. So in practical terms, the so-called “Ashley Treatment” may indeed be something we see more of. I suspect we will do much more good if we focus on creating as much positive knowledge about the mind as we can (and keep that question in the forefront of public awareness), rather than attempting to fight against an economic backlash.

   Keep in mind also that if that kind of question is going to be asked, it leaves you open to rather simple responses, such as “this brain deformity right here that hasn’t changed in nine years.” The lesson from the Terri Schaivo mess (may she never find out some of the awful things that were said and done allegedly in her name) is that argument from emotion will work quite well in the short term, but will undercut you in the long run.

   Does any of that make sense? And sorry for the delayed reply.

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9. sharon Says: January 9th, 2007 at 17:05

   Hiya, I tried posting earlier but it hasn’t appeared yet. Perhaps it went to comment limbo or something. Anyway, I’d saved it so here goes again.

   I think it is fair to use the term ‘de-sexing’ here. That doesn’t mean that a woman who has had her uterus and/or breasts removed for any good reason (or good to her reason) is no longer a woman. Of course she is. But in this case, this aspect of the ‘treatment’ was about making sure Ashley stayed like a little girl forever and did not grow to have a woman’s shape. There’s a quote on the parents’ blog from an ethicist saying;

   “the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. 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.”

   They have very deliberately decided to prevent her from ever having the chance to grow and have a woman’s body.

   I know the money is misspent in the US, as it is here in the UK. (I live in Northern Ireland so under British jurisdiction.) I sincerely hope that this is a one-off. Hopefully the one advantage of what happened to that poor child, is the discussion it has raised of the ethical issues. However, given the tone of most of what I’ve read, it is obvious that many people are unconcerned with the human rights of people with cognitive disabilities. (I’m not including you in that group.)

   I’m not sure that I have explained my self very well. I hope I have not just argued from emotion. I really know little about the Schaivo case and it’s relevance here. Anyway, I wish you all the best, hope you manage to keep off the smokes, and thanks for the interesting debate.

   I’ll end with a quote from Ballastexistenz, on another blog. I’ve learned more about autism and disability than from her than anyone else.
   “This has nothing to do with “pro-lifers”, it has to do with the bodily integrity of a disabled girl being violated because she is disabled, and other people finding fancy justifications for this violation because of what they believe being disabled means. Spend awhile being treated as if you are not thinking, and as if the only kinds of thought you can handle are not real thought, before you think you’re anywhere close enough to the shoes of a person this could happen to, to sit around justifying these things and pronouncing people incapable of thinking for themselves. There are all kinds of thinking, and all kinds of manifestations of thinking, and I have met many many cognitively disabled people and not a single one of us doesn’t think in one way or another. We’re talking about a person here, not some kind of imaginary version of what life in a certain kind of body is like. A person’s parents are trying to undergo elective surgery with horrible justifications and people are letting them get away with it because of what they think of the kind of person she is.”

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10. StealthBadger Says: January 9th, 2007 at 20:44

    I’ve read her work, it’s incredible stuffs.

    Pointing at her and saying “she’s a person” is something that worries me, because she doesn’t know Ashley. The Schaivo case is an example I pull up because Senator Bill Frist pointed at a videotape of her and denounced the diagnosis of PVS that had been given by her doctors – at the time of her autopsy a few months later, it was discovered that her brain had atrophied to half-normal size, and had probably been that way for almost a decade. Our brains are geared to interpret intent in everything we see around us, and it’s much easier to see in other people than not. Not saying she’s wrong, saying we don’t know – an entirely different argument, going back to what I said earlier about the relative importance of bombs and learning about other people.

    More importantly: I would say just as definitively that if you’re going to draw the line with all humans being inviolate persons, then it’s appropriate for me to state that I am seriously troubled with the idea of mass-producing meat for food, because the only “stupid” animals are the ones that haven’t been allowed to interact with their environments in ways that they’re geared for (actually, that’s exactly how I feel and have felt for years, but hey).

    My point has nothing to do with whether someone is a person or not – it’s “why is the shape of the body sacred, and why is the cost of maintaining it not a factor in the shape – not just the appearance, but the actual shape it takes – we choose for it, or in cases where we can not choose, what is chosen for us?

    I don’t advocate cruelty, and certainly any abdominal surgery leaves pretty intense trauma, that’s troublesome. On the other side, exactly what evidence is there that she is even capable of being a parent, if she can’t even roll over, speak, hold up her head, or communicate? If she can do that last one, that very last one, demonstrating both self-awareness, and at least the potential ability to learn what parenthood is in this very real world – not in the abstract or spiritual sense, but in what you’ve got to do to hopefully keep a kid alive and healthy for 18 years – then I would agree that what was done was horrible.

    But that exact standard is the prevailing (if informal) one right now, and a lot of people fail to come through on that potential and they’re allowed to have children anyway. So it doesn’t seem too much to ask. Will she develop that potential understanding? I don’t know. I’m saying that we’re not in a position to know, not you, not me, not Ballastexistenz, not anyone who hasn’t seen her, for years examined her down to the neurological level, looked into her eyes, listened to her heartbeat, and made themselves known to her as best they can and she can learn in turn.

    That combination of people (her doctors, the parents, the ethics board, the nurses, and many, many others who participated in the decision) are the people who were in a position to judge, and they ain’t us.

    I do not envy them, or her.

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