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.

Friday, July 24, 2009

I do!

“To love is to reveal to another person that they are beautiful.” We hear Jean Vanier speak these words often as he proclaims the message that L’Arche has to offer the world, and we live these words in small, simple ways in our homes and programs every day. But is rare that we have the opportunity to celebrate them in recognizable, public ways. On July 18th, 2009, when we gathered to celebrate Angus and Heather’s wedding, that is just what we did.

As I stood among the 300 plus people at the church in Inverness, I was struck by what some have called the “layers of significance” I was witnessing. I was aware of how many other people with intellectual disabilities have been told that their dream of love is unattainable, who for many reasons cannot fully express the love that lives inside them. I felt the importance and meaning of the sacrament of marriage, and the injustice done to so many who are denied participation in this institution. And, most importantly, I was aware of the significance of this moment in my friend Angus’ life. Angus, a gentle man of few words, has been a member of our community since its founding. And he has always been very aware of his place in the social order. When Angus first arrived at L’Arche, he wanted to know why he did not have a nickname, a common practice for virtually all other men his age in Inverness County. So, when he helped peel the logs for the Gunns’ cabin, he became “Angus Peeler”. This nickname was, and remains, a source of pride for Angus, a recognition of his value, of the fact that he belongs.

After the wedding ceremony and reception, Angus and Heather approached the microphone at the front of the hall to say their thank yous. Angus, in his trademark whispering voice, thanked people for coming and for making it such a beautiful wedding. Then he glanced toward Heather and said, “Now the wife is going to say a few words.” Or course, there were gales of laughter, and we have recalled that moment several times since with a smile. It only took about two hours for Heather to become “the wife”! But I think there are layers of significance to this comment as well. Angus knows what it means to be married, to be a husband. Not only in terms of loving and taking care of each other, but also in terms of how husbands and wives relate to each other, and how they relate to the community around them. I think Angus was waiting his whole life to take on the role of “the husband”, which is why he so easily refers to his beloved as “the wife”.

After the wedding, Angus said it had been the best day of his life. Marriage may not be the answer to everyone’s deepest desire, but it certainly seems to have filled a void for Angus and for Heather. I feel so privileged to be a part of their journey, and a part of the journeys of so many others who are seeking love and fulfillment. Whether it be their own apartment, a new job, to be celebrated on their birthday, to have their photo framed on the wall, to have a best friend - I give thanks for being a part of a community that, every day, seeks to reveal the beauty in each person, and in so doing helps me see the beauty in myself.

Monday, June 1, 2009

I AM...

Last night we hosted "Springfest", a dinner theatre to raise money for L'Arche Cape Breton. Original entertainment - song, dance, and theatre - was created and presented by members of L'Arche and was meant to share a bit of who we are with the world around us. We shared about love, grief, laughter, and celebration, about relationships that transform and about the value of every person.

At the end of the evening we presented a video featuring six of our people sharing about themselves. I think that those seven minutes were a profound experience of insight and transformation for many of the 200+ people at the Judique Hall last night. Watch the video at the link below, and I think you will understand the comment that one of the guests made to me last night. He was a 65+ year old man, born and raised in Inverness County, likely not someone who "emotes" very well or very often. But after the video he spoke to me with an obvious lump in his throat and said, "The people in that video, they were telling the truth." Well said.

Now click here and watch the video.

Monday, May 25, 2009

The Year of Magical Thinking

Today marks the first anniversary of Angela's death. I found this piece that I wrote about her back in 2002:

At a Community Night a year or so ago, we managed to get a hold of a karaoke machine. We could play any song we wanted on this giant stereo, either on tape or CD, and it would play the instrumental part of the song, but mute the vocals. We plugged a professional looking microphone in to the back of the machine and sang the vocals ourselves. It was a great evening, and we discovered hidden talents in many of our community members!

But none so astounding as Angela. Angela had arrived in the community a couple of years before, having lived a part f her life in a very difficult situation with her mom, and the past few years in a residential facility in another area of Nova Scotia. She came shy, timid, and reluctant to talk to anyone she hadn’t lived with for a while. She seemed unable to call anyone by name, that being too substantial an expression of connection, even intimacy, with another person. She rarely answered questions spontaneously, but rather waited to be given clues as to the desired answer. Only then would she take the risk of offering her view, even on something as simple as to whether or not she was having a good day. Few people had heard Angela speak more that a few simple words, although we all knew that she understood everything we said, and that she was very capable of using language to the full.

Angela also seemed very self-conscious of her big, clunky, motorized wheelchair, which she depended on so heavily for her independence. Without it, she couldn’t move more than a finger, yet she seemed almost resentful of its presence in her life. It both offered her incredible freedom, but also served to inhibit her even more.

And, so, on that night in the Lodge with the karaoke machine, everyone’s curiosity was piqued as Angela motored up toward the microphone. As assistant in her house cued up a CD, and Angela tentatively cleared her throat in preparation. From the stereo speakers came the swell of the orchestra, and right on cue, Angela opened her mouth and began to sing. And not just “Twinkle, Twinkle, Little Star”, either. No, Angela’s debut was to the powerful Celine Dion masterpiece “My Heart Will Go On”, from the soundtrack of the movie “Titanic”. As her voice got louder and she reached to hit the high notes with style and class, jaws were dropping open all over Lodge. This woman could sing! By the time her voice faded on the ending notes of the song, there wasn’t a dry eye in the place. We had all witnessed Angela’s moment of transformation, and it seemed that we were transformed as well.