There has been a lot of controversy around the  Ashley X story (see here). About whether or not the various ‘keep small’ procedures (hysterectomy, breast bud removal, high dose oestrogen) performed on the six year old, profoundly disabled, child were ethical. I’ve been thinking a lot about the case after hearing  feminist philosopher, Eva Kittay, talk about it at a symposium I was at this week.

EK (would call her Eva but it seems a bit familiar…) began her talk asking who can criticise the decisions of the parents? Well if anyone can, arguably she can. She has a disabled daughter, Sesha, who is in her forties. There are similarities between the two girls.

To summarise her talk, EK carefully went through the arguments raised by Ashley’s parents in support of their desire for the treatment. Basically, the parents wanted their “pillow angel” (hold the shudders for now, eh?) to remain portable so she could still go on holidays and live at home, avoid the discomforts associated with periods, etc and not be sexually attractive (or fertile) to unscrupulous men who may come her way. Those in favour of this treatment argue that the ability of the parents to care for their daughter trumps their daughter’s rights. The child isn’t cognitively aware, won’t ‘need’ her womb, will be vulnerable to abuse, and so on.

EK drew on her experiences with her daughter. She talked about ‘moving through time’ with Sesha. How Sesha developed over the years. Not in ways that fit any recognisable prescribed developmental patterns, but a maturation in her own way. This reminded me of the meal, Rich, LB and I had in a Chinese restaurant last week. It happened that LB was the only kidlet at home that evening, and the option was stay in (with him) or go out (with him). It was a sort of funny, sort of haunting experience. I tried to deflect the flashes of the future that pinged into my thoughts. Rich, LB and me. Out and about.

Chatting about this meal out (together but ‘with’) led to reflections from a few other parents of disabled children. They too had thought about being out and about with their ‘toddler like’ but adult children.

I used to think of it that way too but in reality, LB was nothing like he was when he was younger. He has moved through time too. He is still demonstrably crazily unusual, but he has grown and matured. When I turned up straight from work, he said “How was work, Mum?” That was a jaw dropping moment, that I thought I’d misheard at first. After that, he chattered to himself, ignored us,  stuffed his crispy duck and pancakes and became increasingly obsessed about the cleanliness of the tables. The journey home involved a shedload of repetitive hygiene discussion.

But it was different to taking a younger LB out.

EK described how Ashley’s treatment removed her ability to grow older and kept her frozen in time. She provocatively asked why, if her parents wanted her kept smaller, did they not cut off her legs? She argued that support should be provided to enable Ashley’s parents to care for her at home, protect her from evil and enable her live across a life course. She argued, convincingly, that ‘we don’t understand the contours of our choices’.

And we don’t of course. Though it is often more convenient to ignore that. Especially in the case of profoundly disabled children/adults when we know so little about their lives. Unfortunately, assumptions pervade. The personhood or even humanness of  children/adults with profound learning/physical impairments is under persistent threat.  Frightening when they pretty much comprise the most vulnerable, marginal group in society.

It was a moving, powerful, distressing presentation. A technical hitch meant that the notes were missing for the last few slides. This led to some fragmentation of the prepared talk. EK ended up returning to the question (asked of the parents, medical professionals and others who support the treatment); ‘Why do they insist they know, when they don’t know?’ I’m not sure how much this question featured in her missing script but, for me, it is a question that goes to the core of this debate.