What makes us human?

I was hoping my agitated reaction to the New York Times' Motherlode column “Should Down syndrome be cured?” would fade, but it won’t.

The post covers research from Stanford University that shows that a drug can temporarily restore some learning and memory skills in mice with Down syndrome.

Jenn Power, a Canadian mom of twin boys with Down syndrome, said she greeted the news with tears. “I find it hard to read this article without hearing a judgment on the value of my children, children who have transformed my life and the lives of many others – for the better…In the debate surrounding disability, there is an assumption that we all agree on a definition of what is good, what is better, what is the ideal. Who decided that smarter is better? Who decided that independence takes precedence over community? Who decided that both the individual and the society are better off without Down syndrome?”

Contrary to the Motherlode headline, lead researcher Dr. Ahmad Salehi in the Contrarian notes that his findings are “far from being a cure,” but could eventually lead to greater independence in people with Down syndrome. “There are many places in the world that may not look at Down syndrome the way that Jenn does,” he writes. “For these children, finding a way to even partially restore cognition or preventing further deterioration in their learning and memory would be extremely important and helpful in their very competitive societies.”

The research (while in its infancy) sounds positive to me.

What bothers me is the way the media have framed it as a full-blown cure – as in eradication of people with Down syndrome – and the slew of reader comments that imply life with intellectual disability is somehow less than human.

“The reason it is called a disability is because it is a lack of something…that makes a complete human being," one reader noted. "That is a tragedy; it is not another equally good form of personhood.” Says another: “You'll never meet a doctor or a lawyer with Down syndrome.”

Is a good life – a happy and meaningful life – tied to brain power? Are doctors and lawyers inherently better “people?” What does it mean to be a good human being? Are we less human when our academic intelligence is limited?

Another Motherlode reader equates learning ability in people with Down syndrome to her suffering with untreated bipolar disorder. But does having a low IQ, in and of itself, cause physical and mental suffering?

I can only look to my son, Ben (in photo above with sister Lucy), who has mild mental retardation, in trying to answer this question.

It seems to me that the bulk of suffering for children and adults with low intelligence comes from being judged and excluded by others.

In Ben's case, I think he experiences anxiety and frustration, and that is a form of suffering. But for the most part I do not see his intellectual disability causing suffering.

Is he suffering when he’s laughing hysterically while playing computer games designed for younger children? Is he suffering when I pull him around on a swim noodle in the heated pool at Bloorview – or when he balances on the swim noodle himself and pretends he’s a cowboy? Is he suffering when he looks down from a height of 20 feet to see a group of children cheering his descent on the zip line at camp?

My son does have physical pain, and that is a terrible form of suffering. But I don’t believe that his intellectual disability causes him to suffer.

Years ago I was asked to fill out a survey by genetics counselling students about aborting fetuses based on disability and quality of life. It bothered me tremendously that there were questions like: “Would you terminate if you learned your child had mental retardation that would affect his quality of life?”

People with mental retardation are marginalized and discriminated against in our culture. That’s a social problem.

Does intellectual disability limit one’s ability to have a rich, joyful life? I don’t believe it does. I do believe it makes life harder – much harder – but I don’t equate a good life with an easy life.

I did like this comment on the Motherlode blog, from the mother of a child with Down syndrome: “It is hard to believe that she won’t be able to solve problems or read literature. And yet it is easy to believe that she will rush to a friend, or even a stranger, in need. Easy to believe she will bring joy and light and life. Can you live a full life without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.”

What bothered me most about the Motherlode comments was the hatred and fear that intellectual disability seems to elicit in so many otherwise educated people.

What did you think?