Buried Alive

 

BURIED ALIVE

by Anne McDonald


Katie Thorpe has severe cerebral palsy.  Her parents have decided that a hysterectomy would be the best thing for Katie, to save her the pain and confusion of periods.  They describe Katie as “a 15-year-old body ruled by the brain of a six-month infant”.

Her parents are upset that their sensible suggestion has caused controversy, suggesting that disability advocates are stirring up unnecessary outrage by making Katie look too, well, human.

 Katie Thorpe

"I say to every photographer, her tongue's sticking out, she's dribbling, take the picture,” her father says.  “Part of me thinks I don't want that,” her mother Alison adds, “but part of me sees that it's the truth."

 "Of course I've thought about putting her into a home," Alison volunteered to a reporter. "And sometimes I still do. “

My parents did put me into a home – St. Nicholas Hospital, in Melbourne, a home for retarded children – at the age of three.  I didn’t actually have a psychological assessment before going in, but I was unable to feed myself, go to the toilet, walk, or talk, and it looked pretty clearcut.

For a long time everybody thought I was severely retarded.  When I was twelve they changed their mind and said I was profoundly retarded – IQ<20.  At the age of 16 I was finally taught to communicate, after which I went on to get a university degree in fine arts and history and philosophy of science.  Since then I have done my best to defend the rights of other people without speech who are treated as incapable of intelligent thought.

I still can’t feed myself, walk, or talk, though, and I’m always hard to photograph without having my tongue sticking out.  Who would ever have thought that that would become a test of intelligence?  Tongue thrust is a symptom of athetoid cerebral palsy – more generally, of damage to the brainstem, a part of the brain involved in movement control, not understanding.  Over the course of my life as an athetoid I have had some success in controlling my tongue movements, but I still lose it when I’m tired or sick or stressed.  If this was actually connected with my intelligence I would have to be reclassified twice a week.

No, tongue-thrust is not the all-important ‘truth’ about Katie, and only sheer unthinking prejudice could imagine that it was.  This prejudice is the greatest burden we people with disabilities have to bear. 

Our contortions make us invisible to other people.  Our intelligence is unrecognized, our communication unobserved.  We are discussed in our presence, with people suggesting in front of us that we be operated on or institutionalized, in the belief that we will not understand.  We go through life as spectators, not as participants.  I know how it feels to be talked about as if one is a puppy that has crapped on the carpet   It feels like being buried alive.

The people who regard a dribbling mouth as proof of idiocy overlook the immense change that has been brought about by modern communication therapy.  People without speech can use a range of communication devices, from simple yes/no boards to sophisticated computers which are operated by eye-gaze and speak whatever the user selects.  With proper support, very few people will turn out to have no communication at all.

I don’t know whether Katie Thorpe understands what is said in front of her.  I do know that there’s no way to make sure that she doesn’t.  I can sympathise with her mother, but I can’t see that she’s an objective or an expert witness.  Looking at pictures of Katie I see an engaging and engaged woman.  Would it be too much to ask that her parents talk of her with more respect?

I only hope that Katie will be able to let her parents know that she doesn’t hold a grudge. I was furious with my own parents long after I was freed from my prison.  I have now turned to families not my own, where I find acceptance as well as affection. 

Katie has an irreducible right to make her opinion known on issues concerning her future well-being.  Obviously she can do this only if she has access to the training and equipment that could allow her to communicate.  No one like Katie should be assumed to be incompetent on any lesser evidence than we would need to imprison them for life.

 

Anne McDonald Centre. 538 Dandenong Road, Caulfield 3162 Victoria, Australia Ph: 03 9509 6324, Fax: 03 9509 6321
 
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