Taking It On the Chin

Just before Christmas, I wrote about how excited I was in to find an online community of people with disabilities that reflected the spectrum of what real people are like. I also talked about how I was going to be reading and catching up with what was going on out there and how much I was looking forward to this. I quite enjoyed being challenged, laughing, commiserating, feeling angry and then, on Friday, I read a story that has made me think seriously about running screaming for the hills, into Ostrich Land where I can pretend that life is all kittens and rainbow-coloured bubbles.

Have you seen this? Have. You. Seen. This? I mean, really, HAVE YOU SEEN THIS??? (I'm not quite sure how to convey in writing a banshee scream of rage, please use your imagination) I found this post on the Women in Media News blog via Ragged Edge, read the story over breakfast, which caused me to almost throw up on the spot and then I spent quite some time trying not to cry.

To summarize: a nine-year-old girl by the name of Ashley, severely physically and mentally disabled, has received a rather controversial treatment. Two years ago, her parents asked doctors to stop her growth/development. She has therefore received 2 years worth of hormone treatments and had her uterus and breast tissue removed. The reasoning for this "treatment" is that if she is smaller and lighter, if she has, in effect, been made into a little bonsai girl, it will be easier for her parents to take care of her at home for longer. An ethicist at the hospital that “treated” her is quoted as saying he was convinced the parents were “motivated by love and the girl’s best interest”.

What to do when your disabled child grows up is a fear shared by all parents of children with disabilities and rightfully so. It's a scary pile of issues, all tangled up in the scarcity of assistance, decent care facilities, dealing with sexuality, and fears of what happens when you are no longer able to provide the care. These are all very real issues that shouldn't be ignored and which require dedicated work and commitment for change from not only the parents to solve (yoo-hoo? Government? Use my taxes for something good, will ya??).  

But that isn't what this is about, I think.

The WIMN blog entry quotes an article in the Times of London, where the reporter attempts to pick apart the issue of human rights by asking "[T]hose who talk about fundamental human rights should imagine themselves changing their daughter’s sanitary dressing; or worrying about what might happen if, after they’re gone, she ends up in a care home where some unscrupulous, or perhaps uncomprehending, co-patient takes advantage of her”. 

Let me get this straight – your fundamental human right to not be grossed out supercedes your child’s right to… erm… grow? And should we really believe that the absence of height, breasts and a uterus prevents you from being raped? Shall we have a brief discussion about how – willingly? - naïve the reporter is in the ignoring the most frequent source of abuse of people with disabilities: their caregivers.  

Everyone also seems to have forgotten that this procedure only delays the inevitable: Ashley will need to go into an institution at some point in her life when her parents become too old/poor/divorced/etc. to take care of her anymore. Unless of course said parents at that point manage to persuade a doctor to euthanize her. Y’know, “motivated by love and the girl’s best interest”.

What I cannot understand is how a doctor agree to do this procedure – what happened to “first, do no harm”? What Board of Ethics of a hospital would agree to this? Of course, another medical ethicist, this time at a children's hospital in Chicago is quoted as saying that this treatment is "probably OK", so that makes it all just dandy, don’t it?

The WIMN post asks you to imagine this kind of "treatment" being given to someone without disabilities, which nicely puts a glaring spotlight on perceptions of the worth of a disabled person (ableism is alive and well). The WIMN article also quotes a blogger who asks whether or not this would've been done had Ashley been a boy (and thus, the sexism of the situation puts our -ism tally to two). And then there is an -ism that I'm not sure has a name - what would have been done if Ashley "only" had physical disabilities? Isn't it great how this entire situation neatly illustrates the hierarchy of worth? Able-bodied versus disabled (disability loses), male versus female (female loses), physical disability versus mental disability (do I even need to say it?).

This came hard on the heels of reading a post on My Beloved Monster and Me about a developmentally delayed girl who, despite meeting every single qualification for a needed kidney transplant, was rejected – rather clearly because of her disability. As Rob said “it’s a hard, rough, shitty world for broken people”.

I don't even know where to start with this – I can’t connect to the part of me that can analyze and discuss coherently and effectively and so, I am back to alternating between the urge to scream and cry and vomit. 

 But before I do so, I would like to thank my parents for always insisting that I was a person first and foremost, someone who deserved being treated with respect and dignity and who had the same rights as everyone else.