I used to know a little girl with severe mental and physical disabilities. She had to be lifted and moved dozens of times a day as she was unable to walk or crawl. It was a source of great worry to her parents how they would cope when she grew up and could no longer be lifted easily. More distant, but greater, was their fear concerning how she would be cared for when they died. Their fears did not come to pass for the saddest of reasons; she herself died when she was still quite small.
I thought of that family when I read about Ashley. Ashley is another little girl with severe mental and physical disabilities; even more deeply disabled than the child I once knew. Ashley is fourteen, but is described as having the cognitive abilities of a three month old baby – in truth, if the description of what she can and cannot do is correct, a three month old baby is better able to communicate than she is. Her parents share the same fears as those of the parents of the girl I knew. They have taken drastic action: they have had her treated surgically and with hormones so as to ensure, within the limits of the technology, that she remains a child for the remainder of her life.
“It was carried out in the belief that her quality of life would improve as it would save her from physical discomfort and pain”, reports the Telegraph. The Guardian, which ran opposing comment articles on Ashley’s case, suggests that another motive was to reduce the effort of lifting her and hence extend the time for which her parents could care for her. I wonder if an unmentioned further reason – one that sounds ghastly but might make sense given human nature – was to try to ensure better care for Ashley when her parents are gone by keeping her cuter. It is a sad fact that many people will find their protective instincts aroused by the sight of a mentally disabled child (or apparent child), yet flinch at the sight of a mentally disabled adult.
Ashley cannot consent and cannot withold consent. This procedure might help – no, it very likely will help to give her the best quality of life possible, for as long as possible in the care of those who love her. Yet the potential for abuse is horrible. Her body is being irrevocably altered for the convenience of those who care for her (but that convenience is no small thing, and convenience is too weak a word; whether they can cope is a major determinant of her quality of life.) If we can do this to Ashley, what else can we do to future Ashleys? More severe modifications to more severely disabled people? To less severely disabled people? To any people?