Horrible truths around the Pillow Angel

By India Knight (THE TIMES, 07/01/07):

When the nice paediatrician told my boyfriend and me that our daughter, then aged six weeks, “could never have children”, I remember staring out of the window and thinking: “How horrible — we’ll have to have her sterilised. I wonder what the least traumatic age would be.”

I was completely deranged at the time, having just been told that my lovely little baby would have special needs — hence the deranged thought. I was so shocked by having it, and so disturbed by what I was hearing, that I sort of zoned out after that, and concentrated on trying not to throw up. But I got the basic gist: our daughter has a heart condition, which we knew about (50% chance of passing it on to her own children) and a genetic abnormality, which we’d just been told about (ditto). Pregnancy would therefore carry heavy risks.

I know why I had the thought: nobody wants to think about an innocent little infant’s future sex life: better to erase it in one fell swoop than to start wondering about Tampax and boys and the pill. As the weeks and months passed, and I stopped being mad, I’d occasionally remember my original unhinged sterilisation thought, and feel ashamed. Now, almost three years later, our original gloom-laden prognosis has not come to pass (genetic abnormalities are a lottery) and the question of what my daughter may or may not choose to do with her womb doesn’t preoccupy me overly. Besides, I have infinite faith in medicine and its advances.

The question of their daughter Ashley’s womb clearly preoccupied Mr and Mrs X, an American couple whose nine-year-old child has static encephalopathy, a severe brain impairment that means she has, and always will have, the mental age of a three-month-old baby. She can’t walk, talk, keep her head up, roll over, or sit up. She smiles and laughs, moves her arms and legs, and rarely makes eye contact.

When Ashley was six, she started showing signs of early puberty. A few months later, her parents decided to put her through radical surgery: she has had a hysterectomy, had her breast buds removed and is pumped full of oestrogen daily to ensure that her growth is forever stunted. Ashley will never be taller than she is now — 4ft 5in — or heavier than her current 75lb.

Her parents, a middle-class couple from Seattle, wrote about “the Ashley Treatment” in their blog launched on New Year’s Day. They call their daughter “the Pillow Angel”, since that is where she spends her time, and say that they will be better able to look after Ashley in her radically altered state, and that effectively being a child for ever will improve her quality of life — and, presumably, theirs. They also say that they are protecting her from a hypothetical unwanted pregnancy as a result of hypothetical child abuse. This fear of abuse is also behind the removal of her breast buds, since apparently “large breasts run in the family”.

This story makes me feel nauseous. But if there’s one thing I’ve learnt through having a child with special needs, it is not to judge other people in a similar boat. The chairman of the ethics committee at Seattle children’s hospital feels the same way (incredibly, the surgery was not sanctioned by a court, but by a hospital board). He said last week: “I totally agree with people who say ‘there’s something really bad about doing this’. But we had to get past that feeling and ask ourselves what harm was really being done to Ashley here, and there are some benefits for doing it.”

Ashley’s parents, responding to accusations that what they’d done was “grotesque”, wrote: “The oestrogen treatment is not what is grotesque here. Rather it is the prospect of having a full-grown fertile woman endowed with the mind of a baby.”

I don’t know that I’d call a disabled adult “grotesque”, especially if she were my own child; but it takes all sorts. I understand how it might arguably be called “grotesque” to deal with your adult child’s menses, or to change their nappies, but then dealing with some old people’s physical incapacities isn’t exactly a picnic either. Perhaps they should be stunted, too — perhaps we should all be, the second we show signs of serious illness, since a physically small, unwell creature is so much more appealing than an adult one, inspiring pity rather than fear, or repulsion.

I’m trying to be compassionate and not repulsed by this, but I’m finding it hard going. Take the fear of sexual abuse. Obviously, the disabled are particularly vulnerable, but surely protecting your child from abuse is a parental responsibility, not a medical one? I mean, where’s Ashley going to go — where might the abuse take place? She is house-bound, she is a “Pillow Angel”. And the thing with the breasts: what’s that about? What’s wrong with a good bra? One of the many possible manifestations of my daughter’s syndrome is that boys who have it can have an inappropriate and somewhat overwhelming interest in sex. As I say, I try not to judge, but I like to imagine that if I had a boy who suffered from that particular symptom, I wouldn’t have him castrated.

The horrible truth is that if someone wants to abuse someone else, then they will. Womb or no womb, breasts or no breasts, child or adult. The second horrible truth is that it makes us incredibly uncomfortable to view people with disabilities as sexual beings — but they are, and you can’t use brutal and invasive surgery simply because you don’t want them to be. And the third horrible truth is that looking after a sick child — even an artificially youthful child — is more emotionally bearable than looking after a sick adult. People say “aah” and feel sorry for you, instead of making excuses not to come to tea because they’re freaked out by the adult dribbling in the corner.

None of this is edifying. And I can’t offer any solutions apart from pointing out that we’d better have some new thoughts around the subject, since the galloping speed of medical advances means more and more children are being diagnosed with special needs every year.

As for Mr and Mrs X: they’re the ones looking after Ashley, and they know more than we do about her. We have to trust that they love their daughter, and are acting in her best interests. Who knows — perhaps they are. Or perhaps they’re acting in theirs, and perhaps that’s okay, too: perhaps it’s the only thing that allows them to function. None of us is in a position to judge. But that doesn’t make this story any less disturbing and sad.