“Been there. Done that. Preferred to grow.”

Standard

Found through a post at Moggy Mania:

The other story from a ‘Pillow Angel’ Been there. Done that. Preferred to grow.

I’ve read McDonald’s (auto)/biography before. And she has a webpage here

A quote from her article:

At the time of the initial publicity about growth attenuation, Ashley’s parents wrote on their blog: “In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.”I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley’s. Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damageat the time of my breech birth. Like Ashley, I can’t walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne,Australia. As the hospital didn’t provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn’t learned to walk or talk. Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, “Been there. Done that. Didn’t like it. Preferred to grow.”

[…]

This may be because Ashley is described as having static encephalopathy, a rather uncommon name for a rather common condition. Static encephalopathy just means “brain damage which isn’t going to get worse.” It’s occasionally used as a euphemism for brain damage caused by maternal intoxication, but the most common form of the condition is cerebral palsy unrelated to maternal intoxication. Ashley and I both have cerebral palsy. Ashley’s doctors may have used the term static encephalopathy to avoid the outcry that would have followed if people realized that it was being suggested that girls with cerebral palsy should have surgery to stunt their growth and prevent puberty.

I’m particularly (but pleasantly) surprised that she stood up forcefully to Peter Singer, because I know he’s a personal friend of hers, and that people often won’t challenge their friends in public. And he was badly in need of challenging here by someone in the know.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

20 responses »

  1. It was so frustrating for me to realize “Betty” was not taught to read or write.

    I used to take her aside and fill her with all the knowledge I had. What moved me was an article that stated communication could “fossilize” in children with CP. I think what fossilized was the caregiver’s attitude.

    I am sorry I left the class. Will anyone else see what is in “Betty”, or will they only see what she produces.

    Like the earlier blogpost about teaching…you must teach as if the child is fully there. Anything less is a signal of the teacher’s inferiority, not the childs.

  2. Yeah, I’m not sure I’d describe anything quite that way, but I’d hope that if I described something as dreaded I’d at least be describing something fatal. (But even a lot of people with fatal conditions don’t want to be viewed as having a “dread disease” or something either.)

  3. Some other points in the article Carl links to that caught my eye:

    1. Not a single quote from an autistic adult on what they think of the debate discussed in this article (or, since the focus here is on families, perhaps an autistic adolescent or older child would be appropriate — someone young enough to be very close to these issues but old enough to understand the debates and have an opinion on them).

    2. This org (that made the Autism speaks video) was apparently formed in the first place to repair rifts in the so called “autism community” (relating to cause etc), but this “autism community” seems strangely bereft of autistic people themselves.

    So if anyone does write a letter to the editor, there’s more than one battle to pick on. If the letter got published, it could help alert readers that there are alternate perspectives on these issues.

  4. It seems that this category of objection to Ashley X’s treatment really hinges on her being misdiagnosed, and on her having mental capabilities far greater than what is assumed she has. This brings up two points:

    1) Is this a realistic possibility, given that she’s been examined by doctors who would have (presumably) learned something from the experiences of Anne Macdonald and others like her? Also, Ashley hasn’t been institutionalized; she’s been raised by a family that interacts with her quite a bit, and she goes to school and interacts with people there. In this situation, is it realistic that she could have mental capabilites that go unacknowledged? To the degree that she would express an interest in growing taller, given the option?

    2) If it turns out that Ashley does have the mental capabilities of an infant, the argument against her treatment would break down. Would you concede that, if that were the case, the treatment would be less onjectionable? If not, why not?

  5. 1) Yes, it’s quite possible. I’ve known tons of people who’ve been missed that way intellectually among families etc. Doctors haven’t learned that much, they repeat the same mistakes over and over and over in this regard.

    2) Of course I wouldn’t, I’ve already posted my objections to that idea elsewhere, my video “In My Language” was a response to that whole concept (and not about autism specifically at all), that having a certain kind of thinking makes you less of a person and makes this sort of thing less objectionable.

    However, I also have serious objections to the whole concept of “mind of an infant”, which is a nonsensical classification system for thinking that allows infantilization in the name of “official medical diagnosis” and such.

    3) I don’t think Anne’s whole argument rests upon being misdiagnosed. Part of her argument does rest upon having experienced the life she has, though. And I don’t think much of what she says about that experience would be different if she really had an intellectual disability.

  6. In response to outlier’s second point: No one has the right to control someone else’s humanity, sexuality, or spirituality. One could easily argue this disturbing procedure falls under all three. Even calling this a “treatment” is extremely objectionable and distasteful. Its time we woke up to the atrocities leveled at individuals whom are not given a decision in the matter! One cannot justify such actions!

  7. 3) You’re right, she doesn’t. I didn’t mention this previously, but it’s appalling that *anyone* would ever be subjected to prolonged starvation and isolation, regardless of intellectual ability. On the other hand, I thought it weakened Anne’s argument: to me, there’s just no comparison between Anne’s experience and Ashley’s. The latter was done ostensibly with Ashley’s well-being in mind; the former was the result of cruel neglect.

    2) My non-objection to Asley X’s treatment isn’t based on a direct opposition to the objections to it. I just think that what nature does to a person’s body is often worse than the Ashley treatment. Puberty involves a loss of bodily integrity. I would have chosen a hysterectomy and breast-bud removal for myself, if I could have, because I know that mother nature doesn’t have my best interests at heart.

  8. I agree with Amanda on this one. The idea that someone who doesn’t think in a complex way (if this is even true for Ashley) is the same as an infant is a crude metaphor. Does a dog think like an infant because its thoughts are less abstract than most humans’? Does a lizard?

    Using this metaphor seems to result, as Amanda points out, in the “infantilization” of people who are cognitively impaired. I might point out that women have similarly been infantilized in this way, because they “are more emotional” and “less logical” than men. Even if this was true in every case, the metaphor for thinking more as a child does not hold.

    When you view someone as a child, it’s easier to take a paternalistic attitude that ends up taking away that person’s rights.

  9. The treatment that Ashley’s parents subjected her to sickens me; as does the the fact that Anne did not receive the proper care all human beings and God’s creatures are entitled to. Less time should be spent on figuring someone’s “mental age” and more on basic human rights and kindness.

  10. Rachel,

    I don’t think that Ashley X = infant. It’s a strawman argument. What I did say was that the objection to her treatment seemed to be based on her having hidden mental capabilities that no one is aware of, and that would have led to her voicing her own objection were she physically capable.

    If the situation were reversed – if Ashley had wanted the treatment based on her own research and motivations, but wasn’t allowed to by her parents and doctors – would that also cause outrage? If not, why not?

  11. (I should add: Remember that the treatment Ashley recieved constituted less of a change than attaining larger body size, breast growth, and menstrual periods would have.)

  12. Outlier,

    You’re right, you didn’t make the argument that Ashley has the mind of an infant.

    I don’t know much about this procedure, but what it sounds like to me is that Ashley’s growth was artificially altered to make her seem more childlike even after she was chronologically an adult.

    I can’t really understand why anyone would do this. Only two possible reasons come to mind:

    1) To make her easier to move around.
    2) To make people who already see her as a child more comfortable with interacting with her. If you view someone as a child, noticing that they have breasts and pubic hair might be disturbing to you.

    My objection to the treatment is that, if it was done for reason number 2, it is a radically life-altering thing done to her to support her family’s bizarre and paternalistic attitude towards her.

    If the treatment was REALLY done for reason number 1, or some reason that is pragmatic and for her medical benefit, then it’s open to more debate. I wouldn’t have an opinion until I knew more about it.

  13. I don’t know much about this procedure, but what it sounds like to me is that Ashley’s growth was artificially altered to make her seem more childlike even after she was chronologically an adult.

    No, the purpose of it wasn’t to make her “seem more childlike,” although in some ways she would as a consequence. The purpose was to make it possible for her family to move her from place to place, hold her, take her on outhings without special equipment that would be needed to lift her were she bigger. Also, Ashley has already gone thru puberty, and does have body hair, etc. What she doesn’t have are breasts, a menstrual cycle, and an appendix. Her mother noticed that her still-undeveloped breasts were causing discomfort, and since she can’t sit in a wheelchair without being harnessed in, they would likely cause even more discomfort if they were to grow. Also, Ashley can’t communicate what’s causing her pain, so the hysterectomy and appendectomy were to prevent something like appendicitis that wouldn’t be cought until too late, or painful periods.

    There are websites that explain it in more detail.

  14. If that were really all it was, women with severe cerebral palsy all over the world would be getting mastectomies right and left and growth-attenuating treatments would be the norm for people with severe physical disabilities in general. And they’re not. For a reason. It’s only because she’s unable to talk back that they can get away with this crap.

  15. Painful periods?

    Granted, periods aren’t fun, and can be somewhat messy and uncomfortable (including the possibility of cramps). But unless something is seriously wrong, or unless your cramps are unusually bad (which can be controlled for many women by avoiding things like shellfish and dairy at least for the week before and during the period) it isn’t normally so painful that a hysterctomy is warranted.

    And, isn’t it fairly normal for new, budding breasts to be a little uncomfortable and tender for a while? Usually they become less sensitive, at least to a degree, as they mature.

  16. I’ve thought alot about Ashley X’s parents, and tried to put my finger on what it is about their approach that makes me so queasy. And I think it is this: They have embraced the role of “parents of a disabled child.” They have a cute little “pillow angel.” They love her and take care of her in the same manner they would care for an infant or small child. Ashley was not allowed to “grow up” naturally because her parents chose not to “grow up” and discover what it is like to care for a disabled teen, or a disabled adult. They were willing to be the parents of a “little disabled girl,” but not a disabled woman.

    I sincerely hope that Ashley doesn’t feel trapped in this twilight forever-childhood her parents have arranged for her. This whole situation kind of reminds me of nightmares I used to have after I dropped out of high school–some 10 years later, after I had obtained a college degree, I would, in my nightmare, be forced to return to high school to “serve my sentence.” But it sounds to me like Ashley is going to be serving a lifetime sentence as her parents’ little “pillow angel.”

    (By the way, I believe I saw in the news not too long ago that the hospital that performed the surgeries on Ashley has determined that these procedures shouldn’t have been performed–they should have been sent form approval to the medical ethics committee, which would have rejected them. No kidding… A bit late to arrive at this conclusion, no?)

  17. I’m a little late in commenting, but as I recall, one of the reasons given as to why Ashley’s breast buds were removed was that there was a family history of breast cancer. I’m curious to know whether or not Ashley’s mother, aunts, and sisters (if she has any) have also undergone this procedure. After all, they have the same statistical risk of getting breast cancer, yes? How could they deny themselves the same pre-emptive life-saving surgery that they so lovingly inflicted upon Ashley?

  18. Ashley’s parents wrote on their blog: “In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.”

    You know, even these parents have no idea what it is like to be the bedridden child, how hypocritical of them to try and use this as part of their justification.

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