Sunday, November 29, 2009

Two Maggies!

I have always felt that a person’s name should hold some significance. I love to hear the stories of how people were named, who they were named after, what inspired their parents to choose that particular title. So, when my daughter was born, I wanted to choose a name that would help to express my hopes for her, a name that would give her a great story to tell in a few years, when she is sitting around the circle at a L’Arche new assistants’ meeting.

And so, my daughter’s name is Maggie, a symbol of my hope that she will grow up to embody some of the qualities I love in her namesake and my friend, Maggie Rose Sutherland.

Maggie Rose is a woman of beauty – rich brown eyes, thick dark hair, a figure that most 50-something-year-olds would give their eye teeth for. But her beauty is not just in her killer looks. Maggie’s beauty extends to where it matters most- the inside.

Maggie has tremendous inner freedom. She expresses her joy with exuberance, and her anger with a similar level of abandon. She is not afraid to be sad, or lonely, or elated, or eager. With such radical self-expression, there is often friction between Mags and those around her. Luckily, Maggie also knows how to forgive, and how to accept forgiveness from others.

Maggie knows what she needs: good fiddle music, visits from friends, root beer, time at Waycobah House, constant encouragement and reassurance, someone to keep her company, things to look forward to.

Maggie has a great sense of humour (slapstick being her favourite), an eye for detail, a winning smile, a gift at the microphone, and an ability to make a grand entrance. Not surprisingly, she is widely known and fiercely loved by some pretty incredible people. If you are on that list, you know how good it feels to be friends with Maggie Sutherland.

If my Maggie can catch even just a little of that spunk and style, she’ll be a lucky girl.

Thursday, November 26, 2009

It all comes down to people

I wrote this as a response to a posting on the blog "Contrarian" about news that "a Stanford University research team has made headway toward a potential treatment for the intellectual impairment that is one of the symptoms of Down Syndrome". You can read a brief description of the study, and the resulting blog post, at Contrarian.

As you know, I have many years of history supporting people with intellectual disabilities. Through my connections with these remarkable people, both personal and professional, I have become more and more convinced of the fundamental human dignity present in each person, the vital importance of diversity among the human race, and the particular and irreplaceable role that folks with intellectual disabilities play in creating a more humane, compassionate, and hospitable society. It is clear to me that, as a society, we need what people with intellectual disabilities have to offer.

Before we welcomed Josh and Jacob into our family, I might have had a much easier time responding to this particular piece of research. But as a mother of two little boys with Down Syndrome, boys whose identity, personality, appearance, is linked to that extra chromosome, my ability to rationally argue my point is seriously compromised. 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 – with the help of an extra chromosome.

In the debate surrounding disability – prenatal screening , euthanasia, etc. – 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? I would assert that something important is lost as our genetic diversity diminishes. I would also assert that people with disabilities may not themselves choose to be “cured”. Bioethicist and disability activist Gregor Wolbring, who happens to have no legs as a result of the effects of thalidomide, asserts that, if given the choice, he would want to remain “disabled”. He feels it gives him an evolutionary advantage, even, as it allows him to weed out the “jerks” who treat him differently as a result of his disability. He poses the compelling question, “What exactly is the problem? Is the problem that I have no legs, or is the problem that I live in a leg-dominated society?” Similarly, what exactly is the problem with Down Syndrome? Is the problem that my boys have a low IQ, or that they live in an IQ dominated society?

I believe that our lives are lived not only for ourselves, but for others. My experience with people with intellectual disabilities is that their lives enrich the lives of others, and of the world around them, in significant and irreplaceable ways. I see this everyday in the school where my boys are in Grade Primary. I see how their presence brings out compassion, kindness, even tenderness, in the older kids at the school. How much money do we pour into anti-bullying strategies? Why do we not see the important ways that kids with disabilities help to reduce bullying in schools? In my position as a member of a L’Arche community, I hear over and over how the witness of our people with intellectual disabilities, and the relationships they have with those of us who support them, enrich the lives of the people around us. People speak- often with eyes filled with tears – of how our people help them understand truth, hospitality, and freedom. American disability activist Jon MacKnight can give example after concrete example of how people with intellectual disabilities have enhanced the efficiency of hospital communication, improved performance of local symphony orchestras, even lowered the crime rate in major American cities.

In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet…these people have Down Syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual “impairment” gives them an insight and an emotional intelligence and maturity that I can only aspire to. They do not need a needle in their brain to make them more functional, to help them find their car keys. What they need is a society that values what they have to offer. I would like to think that I can be a part of creating that society.

Silas also weighed in on the topic:

A person's view of this type of medical research depends on whether one sees Down Syndrome as a disease or as a natural genetic variation, like left-handedness or hair colour. Most people in our society fall into the first group, but then, most people in our society don't know much about people with intellectual disabilities. I suspect most people in our society wouldn't imagine the second group exists. It is my experience that most people who have Down Syndrome, and most people who have a close personal relationship with someone who has Down's, fall into the second camp.

This is related to one's ability to appreciate the unique gifts people with Down Syndrome offer to those around them. We do not see them, nor do they see themselves, as people who suffer from a debilitating disease, or as incomplete attempts at humanness. We see them as complete human beings who have a unique experience and viewpoint. Trying to "cure" this condition seems as foreign as trying to cure maleness, left-handedness, or homosexuality.

Contrarian asks why, if we would fix a cardiac problem which is related to Down Syndrome, we wouldn't we do the same for a cognitive impairment. A cardiac problem can be fixed without much effect on the patient's personality, but a cognitive impairment is quite a different thing. Try putting the question of Down Syndrome aside. Imagine your son or daughter has just been born, and an enthusiastic and brilliant doctor proposes a radical new treatment that will enhance your baby's cognitive abilities. "All we have to do," she says, "is regularly inject this
chemical into your child's brain. It will radically alter his/her ability to think and learn. We can't predict what else it will do, as we've never tried it on a human subject before."

To agree to such a radical and risky treatment a parent would have to see his/her child as someone profoundly defective, that the probable course of that child's life would be one dominated by unbearable suffering, without redeeming value. That is simply not the reality of Down Syndrome.

People with Down Syndrome are important and healthy members of society. My life is filled with stories of people whose lives have been altered by their relationships with people who are weak and dependent, and who, partly by virtue of that weakness, have something unique to offer those around them. In a world where no-one is weak, how can we learn co-operation, humility, and compassion? These values are hard to quantify, and therefore they are hard to stack up against the very concrete "deficits" attached to disability.

Our society tends to place an exaggerated value on independence, and to do a poor job of including people who are different. A society that over-values youth, strength, and beauty has something to learn from people who are weak. If there is a suffering that flows from having Down Syndrome or a similar disability, it has to do with inadequate support, lack of inclusion, or the devaluation of people who are
physically or intellectually dependent on others. Research like this does nothing to alleviate these problems.

One of the folk wisdom expressions I learned at Contrarian's knee is this one: "If all you have is a hammer, everything looks like a nail." I would paraphrase it thusly: "If what you have is medical training, everything looks like a disease." This whole debate about a "cure" for Down Syndrome is analogous to the much more widespread question of pre-natal testing and abortion. In most developed nations, the abortion rate for fetuses with Down Syndrome is around 90%. Since people with
congenital disabilities are not generally born to like parents (In terms of marginalized groups and politics within the family, people with disabilities have a lot in common here with people who are homosexual.), parents in this situation are extremely dependent on their doctor's advice. But there is nothing in the doctor's medical training that puts them in contact with a non-disease-oriented understanding of disability. This dramatic eugenic shift is taking place in our society right now, and neither people with Down Syndrome, nor the people close to them have any voice in it.

One final point I would like to make is this. When we get into a debate about the eugenics of prenatal testing, or a "cure" for intellectual disability, the rebuttal arguments (as I've demonstrated) usually focus on what people with disabilities have to offer our society. "Don't change them! Don't get rid of them!" we trumpet. "WE need them!!" I would just like to point out that there is no other group in our society that needs to demonstrate their worth to other people in order to secure their right to exist unmolested. If life with Down Syndrome was really filled with intrinsic, unbearable suffering, people with Down Syndrome would be dropping from our skyscrapers and bridges like flies. If you really want to know the worth of a life lived with Down Syndrome, ask someone who has it.