Monday, May 2, 2016

Aren't humans more than what we 'do?'

By Louise Kinross

“What do you do?”

It’s a question I used to ask when I was young and meeting someone new at a party. It was a way of learning about a person, but, if I’m honest, it was also a way of measuring them. What were their interests? How educated were they? What kind of job did they have?

I can’t remember the last time I’ve used that line. I imagine it dropped out of my vocabulary over the last two decades, since my son with disabilities was born.

I sometimes ask people now, “What do you enjoy doing?” but that is a whole different question.

I am sick of our culture’s obsession with what people can “do” as individuals and how it’s used as the measure of human worth.

It’s this logic that’s devalued people with disabilities, who may not be able to do the same things as those without, or who may do them in an unconventional way or with the assistance of a guide dog, technology or other person.

If we are to value human diversity, then surely we need to let go of a concept of human worth based solely on individual ability and performance.

Aren’t we more, as people, than what we do?

I believe we are, and this is why I’m disheartened when someone attempts to convey the value of a disabled life (yes, I’m using that phrase because of the SayTheWord: Disabled campaign) by trotting out all of the things a person can do.

The latest was this story by Rachel E. Adams in Pacific Standard Magazine: My Son Has Down Syndrome—Stop Telling Me He Has No Future.

Rachel is a Columbia University professor and author of Raising Henry: A Memoir of Motherhood, Disability and Discovery. She's written in BLOOM.

In the Pacific Standard piece, she talks about how medical specialists and others paint a negative view of what people with Down syndrome or more severe disabilities can do as children and adults.

She says it’s this reasoning that feeds in to the practise of parents who stop the growth of their children with severe disabilities through surgery and hormone treatment. Because it’s assumed these children have low intelligence and little capacity to do anything in the future, why not make them child-sized for life, and easier to carry and take care of?

She then contrasts this with examples of what people with severe disabilities and her son have, in fact, been able to do.

For example, she talks about Ruth Sienckiewcz-Mercer, a child diagnosed as an “imbecile” by doctors after brain inflammation, who later was discovered to be able to communicate in a rich and sophisticated way through the use of her eyes.

She notes that author Michael Berube's son Jamie, who has Down syndrome, accomplished most of these things that utilitarian philosopher Peter Singer deemed impossible for a person with an extra chromosome by the age of 14: We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player.
We learn that her son Henry, at age eight, “can read and write; recite whole episodes of The Muppet Show by heart; swim across the pool; and just started his first season of Little League.”

I think this is fabulous.

But what does it have to do with her son’s worth as a human being? Would he be less valuable if he couldn’t read and write at age eight, or swim the width of a pool? Do we need to “do” things to justify or enjoy our existence?

I agree with Rachel that it’s wrong for health professionals to “deny the possibility of an open future” for children with disabilities. All children and families deserve to dream about living a great life.

But why tie a great life to conventional success? Is that useful, or healthy, for anyone—disabled or not?

What about dreaming of a world in which your child feels worthy and that he or she belongs? What about a world in which your child feels “good enough” just as they are, and not contingent on their next big “win” or mark?

At the end of her article, Rachel talks about how she used to seek out adults with Down syndrome to help her imagine what her son might become in the future. But then a therapist set her straight: “Henry’s future is going to be completely different,” the therapist said. “With all the therapy he’s getting, and the educational opportunities available today, who knows what he’ll be able to do?”

Again, with the emphasis on doing as in “I do, therefore I have value.”

This therapist actually denigrates the value of adults with Down syndrome by telling Rachel that her son will “do” so much better.

Which brings me back to what a tragedy it is that we can’t move past conventional notions that link human worth and ability.

Isn’t value a birthright? Does it really have to be earned through what you do? Is our worth always fragile and teetering, given that at any moment we could lose our abilities due to illness or accident? 

Do we really want to make respect and dignity conditional on how a person performs? In other words, if you're not able to do x, y, z, then I have no respect for you?

Why is it that we can’t assign value to each person, simply because they’re human?


Gosh, there's so much to think about in your piece, Louise. I struggle with these topics too. On one hand, I want Aaron to excel to disprove all those who set the bar so low for him - look, he's on the basketball team! Look, he's reading! On the other hand, by bragging about these things, what am I saying about kids who don't 'DO' what Aaron does? That he's better, and they are lesser?

I secretly think that our best revenge is to lead a full and rich life, and clearly defining what that means to our family. To us, it means getting outside, throwing rocks at the beach and cooking & eating good food. It also means watching Amazing Race together on the couch, and going for drives to chase the sunset. Achievements are fleeting. This very moment is all we've really got.

Lots to think about. While I want my boys to experience success in their lives I don't refer to them being successful. That term brings so many connotations that I just don't think are helpful. I admit I gave up long ago measuring success at school by grades even though grades were very important to me growing up. What I want is for my kids to be responsible, respectful and happy and at this point in their lives I stay open to the possibility of anything and everything for their futures.