11 January 2007

The little girl who would never grow up.

Today's Dictionary.com Word of the Day is bowdlerize.

I saw the following synopsis on the RSS feed this morning:

"To remove or modify the parts considered offensive."

I'm aware that the word is usually used in relation to literature and the like, but the wording of that synopsis reminded me of something I've been meaning to write about.

You've probably all read by now about the case of Ashley, the girl whose parents fantasy of turning their disabled child into Peter Pan was realised.

This poor girl has been on my mind a lot since the news story first broke. Her, and all the subsequent children who are going to be mutilated for no real reason except that their parents find the idea of a disabled child "cute," but a disabled adult "repulsive."

Don't believe that that's a mindset that exists? Compare the number of charities raising money to buy appropriate equipment such as decent wheelchairs for children compared to the number supporting adults. Compare the income of those raising money for cute kids compared to those raising money for icky gross adults.

Ashley's parents say:

"In our opinion, only parents with special-needs children are in a position to fully relate to this topic."

Thus completely disregarding the opinions and feelings of disabled people (including their daughter) because we're not as important as the non-disableds most crips crawled out of. A fairly typical non-disabled attitude of "I know about you better than you ever possibly could."

Despite the fact that Ashley's parents (who prefer to remain anonymous, presumably to protect them from claims of child abuse) want disabled people to be small, seen and not heard; unsurprisingly disabled people the world over are taking Ashley's side rather than that of her parents.

When a parent is prepared to mutilate and chemically alter their child to such an extent, it's obvious that the child isn't properly cared for. The parents state in their blog that:

She has a sweet demeanour and often smiles and expresses delight when we visit with her;"


"We constantly feel the desire to visit her room."

Visit with her? You're saying the reason you butchered her was so she could continue to live with you, and you could "care" for her at home... yet she's not integrated into family life? You have to "visit" her? What sort of childhood is that?

They go on to say that as a result of the shrinking drugs:

"[Ashley can be] taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc)"

I'm sorry, but there's no reason someone of whatever size can't sit in the family room or go on trips. Wheelchairs and adapted vehicles so a passenger (and even a driver, though with the mental capacity of a 3 month old, I think it's safe to say that Ashley won't be picking up her driving licence any time soon) can travel in their chair have been invented. Hell, I'd have stolen my parents adapted van and given it to her parents if I could have prevented her from being put through this. (My mother reading this is probably now planning on removing my name as a driver from her car insurance policy).

And as for:

"She will continue to fit in and be bathed in a standard size bathtub. Since Ashley can’t sit, she needs to lie down in the bathtub. Without the treatment eventually she would stop fitting in a standard size bathtub."

If it was my child that I loved, I'd buy a bigger bath. I'd fork out to get a bath custom made if I had to (and, let's face it, it'd probably be cheaper than all the butchering, which I bet your medical insurance didn't cover).

These people are desperately clutching at straws to justify what they've done to their daughter. Unfortunately for them, their reasons are transparent. It comes back to disabled kids being cute, disabled adults not. They wouldn't want an unsightly adult that drools and wears a nappy in their family room, they'd be ashamed and embarrassed to take that adult on trips. But as long as she looks like a child and they can pass her off as one in public, she'll remain bearable to have around.

"To put our decision process in perspective, it is not uncommon for parents with children who have cancer or birth defects to pursue significantly more intrusive treatment (chemotherapy or radiation therapy)."

Erm, yeah... right. Forgive me, but aren't chemotherapy and radiation therapy life saving or at least life prolonging treatments? How much longer is Ashley going to live because you whipped out her uterus, whipped off her nawkes and fucked with her hormones. Oh, yeah, that's right:

"She is expected to live a full life."

And was before you started paying doctors to tamper with her.

"There was one legal issue that we needed to investigate related to "sterilisation" of a disabled person. Upon consultation with a lawyer specialising in disability law, we found out that the law does not apply to Ashley's case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so."

I never knew about that piece of legislation existing in America. I'm relieved to read it does. I read on an internet messageboard about an Australian woman with the same impairment as me who, aged 4, broke her leg whilst on holiday and so went to a different hospital than usual. The doctor treating her leg told her parents "we might as well do the hysterectomy while she's here. You don't want a child like this menstruating." Her parents had the sense to scoop her up and run, but she reported that she'd heard that the same doctor had sterilised other young girls with OI, with disastrous consequences.

What does he think's going to happen if girls with OI are left in one piece? That we'll break our pelvis' changing tampons? That we won't be able to maintain a sanitary regimen if our arms are plastered? (I know from personal experience that it's possible to change a tampon even if your dominant arm is in a pot).

Coming back to Ashley, what about her future? What about the people that have woken up from a persistent vegetative state after being given sleeping pills? What about the people thought braindead who have proven that their brain is/was alert the whole time? What about all those autistic people who were thought for most of their lives to be a "vegetable" who turned out to be exceedingly bright when given the right communication tools?

I'm not saying that Ashley will one day suddenly "wake up" and "be normal". But medical advances happen every day, and what about the possibility that she "might"? What if she does and wants to marry and have kids. Shouldn't the law against involuntary sterilisation have protected her too?

"We also had concerns about Ashley's breasts developing and becoming a source of discomfort while [...] strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues."

They are aware that chest straps for busty ladies have been invented, right? I've seen them. I have a well endowed friend who has one fitted to her wheelchair. Originally she had fitted a chest strap designed for a man, and, as I recall, she did find it uncomfortable (and if I'm honest, it did make her boobs look kinda silly too). So, she had one designed for women fitted. Problem solved, cheaper and much less painful and intrusive than surgery. Did Ashley's parents consider any alternatives to a knife?

"she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts."

"The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk. If Ashley's appendix acts up, she would not be able to communicate the resulting pain."

So, how is she going to communicate the pain of a broken bone? When she screams, how are you going to know what's wrong with her? As Flash points out "And how much research has been done into the effects of aging on a child's body? I expect it will bring its own problems sooner or later - osteoporosis for a start."

Her parents claim that:

"We learned that attenuating growth is feasible through high-dose oestrogen therapy. This treatment was performed on teenage girls in the 60s and 70s, when it wasn't desirable for girls to be tall, with no negative or long-term side effects."

But, erm, "no long term side effects?" The women who had that treatment will still only be in their 40s now. And did you research as to how many of them are developing Osteoporosis at that age? Or how severe it is in comparison to other menopausal and post-menopausal women?

Ashley's parents and doctors did at least have the sense to leave behind her ovaries, so she has her hormones which will help protect her against Osteoporosis, but even before she'd had her hormones messed with, she was still a high risk candidate for it because:

"We call her our "Pillow Angel" since she is so sweet and stays right where we place her - usually on a pillow."

Here's news for ya pal: Pillow Angeling ain't good for ya bones. It used to be believed that babies and children with Osteogenesis Imperfecta should be put on a beanbag or pillow, and just left there. Not touched, not encouraged to move, just left still. Until it was found that it was worse for the children concerned (though some doctors who haven't updated their medical knowledge since they became a doctor many moons ago still believe that. I understand that OT's specialising in OI still throw a lot of beanbags in the bin). See, movement helps increase bone density. Not moving doesn't.

I know Ashley doesn't have OI, but she's still immobile, and kids without OI benefit from movement, especially impact exercise.

I appreciate that Ashley won't be running any marathons, but her parents and doctors must be aware of the negative impact that immobility will have on her bones, and so surely they shouldn't be doing anything which may jeopardise her bone health even more? Especially given her inability to communicate where it hurts?

"Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it."

If Ashley is obviously in pain, and you know it's because she's got her period (which you will, you'll see the blood when you change her incontinence pad), why not resort to a less invasive option, one women have resorted to for many years - painkillers.

"Ashley spent four days in the hospital under close supervision and, thanks to aggressive pain control, her discomfort appeared minimal."

So she's not allergic to painkillers then? So, how about some painkilling drugs in a liquid suspension mixed with her food and administered via her feeding tube? I've just taken some paracetamol (acetaminophen for any American readers) for period pain. Works like a charm. And even if it didn't, there are stronger painkillers available from your doctor, all less drastic than major surgery.

"Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse."

I'm so surprised I've not read any objections from feminists about this. It only seems to be disabled people offended by what's been done to this child. What her parents are saying is that the way to prevent a woman from being raped is to fix the woman, to remove temptation. Then all is right with the world.

If a child-like body makes a female unsexy, how do Ashley's parents explain paedophilia?

"Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused."

So it's OK to rape a woman who can't tell on her abuser as long as she can't get knocked up? What about the risk of sexual transmitted infections? Or is it OK for a severely learning disabled woman already to lose her mind to syphilis?

If she were my child, I'd do everything I could to protect her from abuse (and I don't mean removing temptation by lopping her boobs off). I'd fill my house full of surveillance equipment if I had to so I could spy on her "caregivers".

It's not often I agree with the opinion columns by Dr Tom Shakespeare, but his article on Ashley is great. While most of the world is trying to convince midgety crips that we should be taller so we can reach the top shelf in the supermarket ourselves (back to my old peeve about the feta cheese) rather than making the world adapt to us, Ashley's parents want one of us shortarses. I'm kinda flattered in a way that according to non-disableds that it's now OK to be short - that short is the new tall.

"Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body."

It all comes down to aesthetics. Disabled kids are cute, disabled adults are gross.

"Ashley is a beautiful girl whose body is developing normally with no external deformities."

Well, I'm about to drag my deformed, unsightly, disabled adult self into the bath. Night kids.


  1. Anonymous1:44 pm

    Brilliant Lisa. Absolutly fucking excellent. Exactly what I wanted to say about it all. Esther.xx

  2. Anonymous12:35 am

    Spot on. I think it's one of the best articles you have written.

    Aliya xx

  3. Anonymous5:15 pm

    I agree! People can be so idiotic when it comes to dealing with disabilities. The disabled person never gets any say in the decisions it's alwyas the non-disabled people. I think it's time someone spoke out be it by voice, sign language, or whatever. We (the disabled) refuse not to be seen, heard or understood!

  4. Thank you so much for this article. I keep thinking if they're so worried about pregnancy, wouldn't Depo-Provera shots be less drastic than a hysterectomy? I've heard a lot of women don't menstruate when they're on it, too. The whole thing sickens and disgusts me. Not only are they denying that their daughter is a woman, they're denying her basic human integrity. With apologies to Mike Meyers, their "pillow angel" is neither a pillow nor an angel. Discuss.

  5. Anonymous12:11 am

    Wow, I was just about to write about this myself (as soon as I have time). There are so many things wrong with what happened to Ashley...

    The thing that worries me, is about a British family wanting it to be done to their child. If this is allowed to happen to a human being who apparently has the mind of say, a three month old (as it is claimed she has), then what about a child of a four month old? In fact, based on the excuses the parentsand their supporters have used, surely one day somebody could justify treating children with Downs Syndrome?

    The bottom line of this case seems to be that a human being with less intelligence, or awareness of the world apparently seems less entitled to their human rights than a "normal" person. Surely we should be adapting our society to take care of everybody, not pumping somebody with a disability full of chemicals to make them less of a burden upon us.

    That's just my opinion anyway.

  6. In fact, based on the excuses the parentsand their supporters have used, surely one day somebody could justify treating children with Downs Syndrome?

    Thats if they ever get to be born in the first case...give the doctors an inch and they take a yard, 90% of fetuses diagnosed with DS are aborted "on medical advice". Try telling that to my son (with DS), who attends mainstream secondary school and enjoys rock climbing.

    Great article.

  7. Anonymous8:41 pm

    As the mother of a 13 yr old daughter with Downs Syndrome, I can see where Ashleys parents are comming from. My daughter is 13 and cannot speak, yet has the interest to explore sexual discovery anywhere and everywhere to match that of any 16 yr old. She is physically developing like a 13 yr old, but she is only as tall as a 6 yr old. She has a violent nature when she is upset, and unfortunatly she is as strong as an ox.
    So, according to you, your O.I. is the same as my daughters D.S. You are saying that where you can express yourself with your ability to SPELL, TYPE, READ, TALK, cook for yourself, or any of the other things you can do on your own, makes your disability the same as my daughter who cant talk, write, spell, read, or anything else that a normal 6 yr old can do.
    You, were raised by normal parents, I assume. Do you have a child with disabilities? Have you had to play 20 questions to find out where they hurt or why they are crying. How about trying to teach a child with the mental capacity of a 4 yr old why she is bleeding and that it is perfectly normal. Try explaining to parents when she hits their child that she dosent understand that hitting is wrong when their child is bleeding from the nose or they have a black eye. I don't think being disabled gives you the right to judge the parents of a disaled child.

  8. You, were raised by normal parents, I assume.

    Yes. I was. As well as being "normal" (however you define that, but, they're not, you know, Star Trek fans) they are also both disabled.

    I don't think being disabled gives you the right to judge the parents of a disaled child.

    And prey, do tell me, why being non-disabled gives you the right to judge me?