there was a news story out today about a girl with profound disabilities whose parents have elected to permanently stunt her growth.

Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.

Her parents decided on a course of treatment for her which has involved hormone doses to limit her growth, as well as uterine and breast surgery.

They say the treatment will help to improve her quality of life.

I can’t begin to say how appalling I find this. As someone who has worked for people with disabilities for virutally my entire career, (including many years of physical assistance for adults – cleaning, feeding, dressing and toileting), I find it completely unconscionable that we’re willing to allow this to be done. And the most galling bit is that as a society we would never in a million years allow this to happen to someone without learning disabilities.

She doesn’t have the mind of a three month old – she has the mind of a 9 year old with profound learning disabilities. And so pretending that it’s fine because people who don’t understand learning disabilities interpret it as simply “matching a body to a mental age” is to deprive this girl of the right to be who she truly is – a girl who will eventually be a woman, whether she physically grows or not. As a human she has the right to primacy and control of her own body. She has the right to experience adulthood and fertility, even if she can’t understand them.

There are millions of adults with limited or no mobility, who get around and experience life – most of them *don’t* have learning disabilities. Should they have been kept stunted and asexual? Would anyone dare to suggest they should have?

Some have made the argument that the girl will get better care if she is physically small – that this will allow the parents to keep her out of crappy state care.

The fact that some people get crappy care, however, (and admittedly some do), is not reason enough to try to make caring for people with disabilities easier for us by *changing the person with the disability* . We don’t get to electively take away someone’s development and strip them of their sexuality, simply because we can’t improve our care systems. We don’t get to go changing the person with the disability simply because it’s easier than changing the support structures which are broken. We shouldn’t get to take away someone’s right to be who they were intended because of our own fears and failings.

If we do that, we’ve failed them twice.

(And let me be clear – I’m not passing judgement on the parents, as misguided as this is. Every parent has differing abilites to cope – though I’ve known many who did more than I ever could (I am reminded of a widowed mother I worked with who had 3 adult children with profound disabilities living with her at home and still remained cheery!) I *am*, however passing judgement on the doctors who decided to go along with this. They’ve set a dangerous precedent, and as medical professionals should know better.)

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ashley, disabilities, , stunted growth, learning disabilities