Sticks and stones may break my bones, but words can REALLY hurt me

On top of all the discussion (and it has been such good discussion) about disability and cures, what it means to be human, the value of a life lived with Down Syndrome, the human need for "perfection", the past week has also opened up an exchange about the use of the word "retarded". Let me come out strongly and vigourously against that word, right off the bat.

What arose this past week revolved around the use of the word "retarded" in a CBC radio comedy sketch. Someone (thank goodness!) wrote in to express their disappointment that the CBC would allow the use of such a hurtful and discriminatory term. In response, a couple of listeners wrote in to oppose that individual's opposition. They suggested that "the problem is not with the word, but with people's attitudes". One of them argued that "politically correct language doesn't change the seriousness of conditions like Down's [sic] Syndrome. I would hope that CBC would strive to use language that accurately describes reality rather than language that obscures difficult facts in euphemisms."

The phrase "person with an intellectual disability" is not a euphemism that obscures a difficult truth. People with disabilities suffer such discrimination and marginalization in our society that we don't need to worry about disguising any harsh realities - they know the cruelties of life first hand, and face those harsh realities from the day they are born. Of course, neither is "person with an intellectual disability" a perfect term. For example, it still contains the term "disability", a label with an inherently negative connotation. Who else among us is defined by what we cannot do?

But like all knowledge, language is always evolving. As Silas wrote, "Try reading almost any book written more than 30 years ago without noticing the glaring use of only masculine pronouns, where today we would write "he or she". This change in language both reflected and extended a change in attitudes that took place as our society began to recognize the equality of the sexes. Language changes all the time. Sometimes we have to do it consciously and explicitly, so our language can catch up with our politics." Hopefully someday we will find a way to talk about people with Down Syndrome or people with autism that won't immediately conjure an image of a damaged, limited, less-than-whole individual. Hopefully we will find a way to talk about our people as, well, people. Of course, that will only happen as our attitudes toward these devalued groups of people change, and that change won't happen unless we speak out.

In the meantime, let's follow the example of People First, one of the only advocacy networks for people with intellectual disabilities which is totally run by the people for whom they advocate. For them, people first language is so critical that they chose it for their name. We need to listen to this too-often unheard voice of people with intellectual disabilities, who always have people speak for them and about them, but so rarely have the opportunity or the ability to speak for themselves and actually be heard. (You have to look hard to find folks with intellectual disabilities weighing in on this particular issue. But this five-minute video is a wonderful example of self-advocacy.)

Again, I quote Silas: "The deletion of the words "retard" and "retarded" from the English language is long overdue. These words belong to a bygone era, a time when the medical community, and society, regarded people with disabilities as diseased errors, subhuman. Today they are nothing but schoolyard insults, dripping with hatred and oppression. Sure, some people who use them don't mean it that way, but most do. We should respect the right of people to choose the term that will apply to them. If you wouldn't call someone a "cretin", an "imbecile", or an "idiot" (terms with a similar history as "retarded"), if you wouldn't say "negro" or "Jap", then don't call someone "retarded"."

The Motherlode

So, through a series of connections that are not quite clear to me, my post from Contrarian about a possible "cure" for Down Syndrome was picked up by the New York Times blog on parenting, called Motherlode. Quoting me as well as Dr. Salehi, the author of the original research study, the post asks "If there were a cure for your child that would fundamentally change who he is, would you welcome it?"

Parker Donham, Contrarian blogger (and my father-in-law) contacted me to give me a heads up about the post, in particular to warn me that there were reams of comments on the NYT post, all of which were firmly entrenched in the opposite position to myself. He was afraid I would be hurt. I had no such fear. I know that my position is a minority one. When you throw your lot in with marginalized people, you get marginalized. I understand that. And I would suspect that NYT readers might be particularly unsympathetic to an argument that asserts the value of people with intellectual disabilities.

But booting up my computer the next day and clicking on the Motherlode link, I was surprised by my own reaction to the comments I read. It is not easy to hear people, even strangers, call you selfish, patronizing, uncaring, a bad parent. Especially when people call you that in very articulate, well-written letters to the New York Times. I will admit, I was hurt. I couldn't make it past the first page of comments. And aside from being hurt, I was unsure of what to do next. Do I respond and open myself up to further criticism? Do I ignore it, knowing that the online attention span is even less than the proverbial fifteen minutes? But what about my supposed commitment to advocacy? Do I cut and run as soon as it gets difficult?

Well, thank God for Silas. Just as invested as I am, Silas took the bull by the horns and posted his own comment to the NYT blog. (His is the only comment, by the way, to be highlighted by the author of the original post.) He also contacted other friends and activists to ask them to weigh in on the conversation, in hopes of providing some balance.

If you go the Motherlode blog you can read the original post and the comments. You might even want to register and make your own comment. Following you can read what Silas wrote. And further down in this blog you can read my original post that has caused such a stir.

I should say that I think I am over my original shock and hurt at the harsh critique of my position. I have heard from people, both directly and indirectly, who share my unfortunately minority opinion. And I have seen even more clearly what a dangerous place this world can be for people with intellectual disabilities.


Silas's recent post...

First, the disclosure: I am Jenn Power's husband, father to Jacob and Josh, and son to contrarian.ca, the blogger who got all this started. I have spent my adult life living and working intimately with people who have intellectual disabilities.

Many of the contributors to this discussion seem to be imagining a magic pill without risk or side-effect that would remove the intellectual impairment associated with Down Syndrome. Medical treatments like that do not exist. Of course Jenn and I want our children to have every advantage, and the fullness of potential, which is available to them. Our boys have glasses, they have tubes in their ears, they attend school as well as physio-, occupational, and speech therapy, a clinic that focuses on eating difficulties, an adaptive swim program, a youth group, church, friends' birthday parties, etc. I home-schooled them for a year to get ready for regular school. But we would not let an enthusiastic medical researcher take a potential chemical blender to their brains in infancy. Thank you, no. In that sense, our boys are just fine the way they are.

Many of you have posed questions from the imagined viewpoint of a person with a disability: if you had Down Syndrome, wouldn't you want to be "cured"? Can you imagine a person with no legs NOT wanting a treatment that would give him legs? It is a sad observation that the voices of actual people with disabilities are usually absent from discussions of this type (thanks to Ingrid in San Francisco for bucking that trend). In fact, their answers to these questions are often not what you would expect. I first contemplated that idea when I heard a CBC radio piece produced by Dave Hingsburger, a counsellor and disability rights activist in Toronto. Over the course of a two-hour program, Hingsburger talked to many members of the disability community, including people with Down Syndrome, as well as a man who has no legs. At some point in the course of other discussions he asked each person he talked to whether, if presented with a pill that would get rid of their disability, they would take it. Without exception, they all said no.

At the time, this was an earth-shattering notion for me. But the fact is that I know many people who have intellectual disabilities. No-one I know sees themselves as diseased, suffering, or in need of a cure. So who is really imposing their viewpoint here?

Jenn framed her response to this medical research in terms of the benefit she has received from her relationships with people with disabilities, and the benefit society as a whole stands to gain from them. Unfortunately some of you have construed that to mean that people with disabilities should be kept in a limited, suffering state so the rest of us might benefit. Several of you even made the very hurtful comparison between our boys and "therapy animals".

Perhaps it is a symptom of the way people with disabilities are devalued in our society that we so often feel the need to justify them by naming the benefit other people receive from them. No other group in society needs to do this. However, that is not the basis by which we make decisions about our boys' lives. Everything we do (including the hypothetical rejection of experimental brain treatment) for them is with their best interests at heart. And to respond to other posters, we have not forgotten what might happen to our boys when we are no longer around. That is why our whole lives are devoted to people with intellectual disabilities, from our parenting to our professional lives with L'Arche to our involvement in the local school to our involvement in discussions such as this one. A society that recognizes the gifts of people with disabilities is one that goes beyond inclusion and tolerance to real relationship.

People are complicated organisms. Tinkering with one aspect affects a host of others. As a society we tend to overvalue independence and intellectual competence. These things do not bear a linear relationship with happiness or quality of life. There are a lot of independent people who lead very lonely lives. In my experience of people with intellectual disabilities, the ones who are more capable and independent are often the ones who have the hardest time finding a place of belonging, and who therefore lead lives of greater suffering. I don't mean to say that capability is a bad thing; I just mean that it is complicated, and that makes the ramifications of this treatment hard to predict.

We don't know whether this potential brain treatment will lead to greater quality of life for people with Down Syndrome. We don't know what its risks and side-effects might be. We do know that people with disabilities are undervalued, insufficiently supported, and too seldom consulted or in control of the decisions that affect their lives. Why don't we put more work into supporting the weaker members of society, combating bullying and abuse, and discovering and learning from the experience of people who have disabilities, and get less excited about expensive, unproven treatments that may do more harm than good?

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.

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.

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.

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.

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.

The Big 4-0!

Last night, Dennis turned 40, ("the big 4-0", he proudly announced to everyone he happened upon) and celebrated his 15th anniversary as a member of L'Arche Cape Breton. Faithful to his loves, the day was built around food and people. 22 of us went out to the local greasy spoon, where Dennis' excitement level nearly prevented him from finishing his meal, he was just so full of chatter and questions. Then back to the Lodge where dozens of people waited to wish him well and celebrate with him. We watched a movie that Silas had made for him, full of music and good wishes from friends and old pictures of Dennis. Next, Maria arrived with two authentic German black forest cakes and the day was complete.

All day, Dennis was so happy, so thrilled with the plans and the menu and the possibility of cards and presents. It was good to see him full of smiles and laughter and glee. But what was even nicer was to see how touched, how emotionally moved, he was by the movie and the nice words and love of so many people that filled that film. That softer, gentler side of Dennis is one we rarely see, but it is so much a part of who he is.

Everyone deserves to be celebrated. When we make the time to give thanks for each person, we often see parts of them we would otherwise miss. We can get to know people in new ways - their beauty is revealed to us. For people with disabilities, who are so seldom celebrated, these times of gratitude and celebration are essential, not just for them but for the world that is so in need of their contribution.

Michael Hector Steele, August 2, 1962 - June 16, 2008

You remember 2008?......June?......16th ?......

That is a date I remember, a date I will mark on my calendar, commit to memory, recall often, and remind others of. That is the date that I sat with a great man as he made the passage from this world into the loving embrace of a merciful God. That is the date that friends and family, drawn together by the love of a simple man, sang songs and said prayers and drank a toast (dark rum in medicine cups) to a true peacemaker.

You know Cleveland?......You know Charlotte and Roddie Steele?......You know their son, Michael?......Well if you did, consider yourself blessed.

Michael Hector Steele was a man whose life was full of riches. Some of his riches were because he could never seem to “find” his wallet when it was time to pay the bill, some because he was light on his feet, could move quickly when he needed to, and couldn’t resist the temptation of money just sitting there, unattended, and nobody looking. But mostly Michael’s life was full of the riches of family.

As is the mystery of so many things in life, this richness began with suffering, when Michael lost his mom when he was just a little boy. But that early loss enabled Michael to belong to two families – the Steele’s and the MacDonald’s. And so Michael was doubly blessed.

Gerri and Floyd’s courage in welcoming this little boy in the first months of their marriage was a leap of faith that yielded rich rewards. Mike was raised in love, by a family who treated him as he deserved to be treated – just like everyone else. They loved him and irritated him, they teased him and forgave him and tried to hurry him up. They believed in him and they taught him to believe in himself. They gave him one of the most important gifts that a person with a disability can be given – a strong sense of self and a confidence in his own worth as a human being. Michael knew he was worth something, and he expected to be treated with dignity and respect. And so he was. He was a son and a grandson, a big brother, an uncle, a groomsman, a brother-in-law. (He never got to be a dad, although according to Judy, if she had her way, he would have!) Many people have commented on how lucky Michael was to have had such a wonderful family. Although this is certainly true, it was Susan who said that those folks had everything backwards – they felt lucky to have Michael.

Michael’s family loved him well, and he loved them back just as fiercely. To see that famous grin threaten to split his face right in two when one of his brothers would burst into the room and make some boisterous remark about “Steely Dan” would do your heart good. He loved to tell stories of his family, and although the stories were often excruciatingly long, it was a joy to sit and listen and watch his face as he recalled his family in Cleveland and Creignish. Truly, when he told stories of his family, Michael was telling the story of his heart.

Over these past weeks, many of us have been so moved by Gerri – her strength and strong will, her refusal to take no for an answer. When Gerri came to Korban House, Michael sat up and took notice. If Gerri said he had to eat something, he ate. During his first stay at the Baddeck Hospital, we could barely get Michael to sit up in bed. But when Gerri came, he was walking up and down the hospital corridors. I saw the same dynamic at work yesterday, as Gerri traveled from Steele to MacDonald, sticking nametags on lapels of reluctant family members so everyone would know who was who during the wake. “Resistance is futile”, one of the kids commented. And yet for as long as I have known her, this powerful woman, this “force to be reckoned with”, cannot speak of her son Michael without the tears coming. As she begins to talk about her gratitude for Michael’s presence in her family, for the way he helped to teach her kids to be good people, people of compassion and sensitivity and welcome; as she asserts with absolute certainty that welcoming Michael was the best thing she ever did, her emotion wells up and spills over and she seems so fragile. This is the power of Michael Hector Steele.

But even after a rich and full life in Creignish, loved and cherished and cared for, Michael’s arrival at L’Arche was a new life for him. He was so proud to do what his beloved brothers and sisters had done before him – move away from home, get his own place, land a “real” job with a weekly paycheque, a social life independent of his relatives. That same sense of generosity that made it possible for Gerri and Floyd to welcome Michael as a boy now enabled them to share their treasure with us. And uncovering that treasure over the past eight years has been a blessing and a privilege for all of us at L’Arche Cape Breton.

There is popular saying that I have seen on greeting cards, wall plaques, and fridge magnets - Live well, laugh often, love much. Typically this sort of pop culture wisdom rubs me the wrong way. But as I have had occasion to reflect on the life and times of Michael Hector Steele over the past few days, I am struck by how fitting this little phrase seems to be.

Michael lived well. He knew to appreciate the gift of each moment – a good cup of tea, a piece of F-U-D-G-E, a visit on the couch with a friend. He took his time. (Although it think it was Graham who mentioned that the folks who thought he always moved at a snail’s pace never watched him as someone across the room was pouring a drink of rum and coke ) Many people have talked of how much Michael loved to dance, and how much they loved to watch him dance. He did the steps and the square sets his own way – slowly and a little lopsided – but with total freedom and without a shred of self-consciousness. Quite the opposite, in fact. He claimed his place in the middle of the floor, right in front of the stage, whenever the fiddlers gave the nod for the really good dancers to show their stuff.

Michael laughed often. He laughed at his brothers when they teased him about being lazy or cranky or any number of sins. He laughed when his friends made jokes about things he considered scandalous. He laughed at his own jokes. Like the time he persistently beckoned one of the assistants at Asha House to “come here”. He wouldn’t stop until Joe was merely inches away from Michael’s nose, at which point he grinned and said “Shut up!”

And Michael loved much. He filled up with emotion when a friend would give him a kiss, or grab him in a waltz and dance across the floor. He relished the opportunity to take one of his many lady friends out for a meal or a drink. And once he let you into his heart, he never let you out.

Many people have been touched by the way Michael was loved during his last days at Shalom. Someone wrote us a note saying that “L'Arche has a role in teaching the world how to live the passage of dying with grace and compassion.” I believe this is true. But I think that the reason we are able to live this passage well is because we are open to the example of the “unlikely teachers” in our midst, people like Michael Steele. Our people live with vulnerability and weakness, a fact which these last months of Michael’s life illustrated so clearly. And even though our world teaches that this weakness and fragility is to be avoided, we know in L’Arche that we are called to walk with people on these difficult roads, to accompany them in suffering as well as celebration. And we believe that in this suffering there is somehow the mystery of Jesus’ presence among us.

Until recently, the closest any of us got to helping Mike with any personal care was knocking on the bathroom door begging him to hurry up! But over the past few months all that changed and Michael needed us to care for him in very obvious, physical ways. He needed us to help him eat, to move him, to bandage his feet, to help him get washed and dressed. These were difficult times for Michael and for us. And as I looked at his little body lying there in his bed in our house of prayer, I kept picturing the body of the crucified Christ, so tiny and vulnerable, so broken. I imagined Jesus friends standing at the foot of the cross, witnesses to suffering, crying out in disbelief and despair, as we did, seeking some explanation for why their dear friend had to suffer, and had to leave them so soon. Just as the passion and death of Christ remained a mystery to the disciples until Jesus was revealed to them in the resurrection, so Michael’s suffering and death is still a mystery to us.

There are so many stories about Michael – too many to tell today. There are stories about Michael as a toddler, running into the side of the house as he watched with delight his shirttails flapping in the wind; about finding a stash of dried up banana peels behind his bed; about threats of having to walk to Bingo if he wasn’t ready on time; about too much "Murder She Wrote" leading Michael to create all sorts of sordid mystery stories of his own; about broken arms and missing fingers endured without complaint; about frosted cinnamon rolls snuck into pockets and eaten in the privacy of the bathroom; about "Steeles not drinking beer"; about Michael making the arduous trek to the top of the waterslide at the Delta Hotel pool, ceremoniously making the sign of the cross, then screaming like a girl the whole way down.

But the story that remains with me today is the one of Michael in a L’Arche summer vacation group going on a whale-watching tour in Pleasant Bay. The day was windy and the whitecaps on the dark green ocean looked ominous. But with some convincing, Michael reluctantly agreed to join his friends on the boat. As the vessel ventured out over the rolling waves, Michael’s face got greener and greener, and his knuckles whitened as they gripped the side of the boat. As Gillian, trying to lighten the moment, leaned in close and said, "Are you ready for a rum and coke yet?", Michael looked at her scornfully and said, as only he could, "What do you think?" When the boat finally came safely ashore and Michael’s feet were once again on solid ground, he was jubilant. He raised both arms high in the air and shouted "Amen! Amen!"

What a metaphor for the last months of this man we loved so much. Michael has been on rough seas, anxious and worried and often in pain. But now I can picture him at the pearly gates, sitting with Charlotte and Roddie and Floyd, surrounded by half moons with the fiddle tunes dancing in the air, a jillick clutched in his hand, and his arms raised high in triumph shouting, "Amen! Amen!"

So long, dear Michael. It’s been good to know you.

Consider the lilies of the field

For the past few months, Ian and I have been quietly working on the script for "Home of Our Hearts - The L'Arche Cape Breton Story". This event is happening on Friday, June 27th, as a part of the L'Arche Cape Breton 25th anniversary celebrations. It's quite an undertaking, condensing 25 years of history into a 30-45 minute drama that can be staged by people with disabilities, but we were up for the challenge and things have come together beautifully. Our story is told in themes, not chronology. All the narration is provided by excerpts from L'Arche Cape Breton newsletters, and the action mainly comes from mimed Bible stories.

One of our themes is "Trust in Providence". The biblical text is from Matthew. "Consider the lilies of the field, how they grow; they neither toil nor spin, nor gather into barns, yet I tell you, not even Solomon in all his glory was clothed like one of these..." The action was simply our own Angela Cormier, centre stage, a flower.

Angela is the perfect illustration of Jesus' message in this reading. People look at Angela in her big motorized chair, unable to move anything but her fingers without help, and they think she does nothing. And in a sense, maybe they are right. But like the lilies of the field, not even kings and queens in all their glory add as much beauty to the world as Angela.

On Sunday, May 25th, Angela died.

Even to write these words is still an effort. Angela was only 28 years old, full of life, welcoming every day with enthusiasm, eagerly anticipating the excitement in the weeks and months and years to come. Her death is a tragedy; her departure leaves a hole in my heart and in my life and in my community. The death of this woman of light and prayer and beauty leaves me in darkness, unable to pray, searching in vain for beauty around me.

And so this theme of "Trust In Providence" that Angela was meant to illustrate so eloquently takes on a deeper meaning, and is a challenge to me in these days of grief. Can I trust in Providence now, through her death? If I was so convinced just days ago that Angela's life was a call to trust in the mystery of God's loving care, then how can I hear that call also in her death?

Today I pray for consolation and for trust. And I offer these words from Angela's friend Haley, read at Angela's funeral:


Ma chandelle est morte – My candle is out.

Truly the darkness lingers. During the past few days, we have seen the night. We have spoken of emptiness, of 'blackness', of utter sorrow, of brokenness. We have asked questions, we have told stories, we have sung songs, we have held close together. And yet, the darkness lingers.

I keep searching for my light. I keep searching for the woman who was always able to tell me "Don’t worry about it, it’s going to be all right. The don’t be sad." I keep searching for someone to tell me with utmost certainty "Maybe, the be the heaven, the angels, the be the God inside me, maybe the be home."

I keep searching for the woman who delighted in a good hug, a nice back rub, the opportunity to sit together and talk; the woman who loved so much and felt so deeply; the woman who pushed me to the brink and then helped me regain my balance and find joy in relationship, in love that 'trusts and delights in all things', in pure light.
But I realized, as I sat in the dark last night, surrounded by candles as we kept vigil, I was truly privileged to have even known such light. And, in truth, I could only understand the light because of the darkness. Let me tell you about my friend Angela.

Angela was born in Cheticamp in July of 1979. She was the first of two daughters to Bernie and Dorine. Angela was born with a rare form of Muscular Dystrophy, found only in the Acadien population. She wasn’t expected to live past the age of 5. However, Angela was rarely interested in the expectations of other people. Angela moved to the SOS Children’s Village and then, in 1998, she found home at L’Arche. She graduated from high school in Whycocomagh, and shortly thereafter she began work at the Workshop. She is known internationally for her beautiful aprons and blessing jars.

She is known, in my vivid memory as the woman who reduced me to tears on more than one occasion. I know her as the woman who stole my heart, and every now and then tried her hand at breaking it. I know her as the woman who loved others deeply, and loved to a depth where she needed to challenge and risk great loss. In my relationship with Angela, I just kept coming back for more and she was always there, waiting for me.

We often speak of how being with others who know weakness allows us to touch our own weakness, and this was certainly true in my relationship with Angela. She herself had lived life to the edge, and she took me there with her – in the weakness, in the violence, in the utter sadness, in the darkness and then – in the joy. Angela’s joy could overtake her entire body – her feet would dance, her wrists would move in circles, her tongue would stick out and her face would turn red. It was as if every fibre of her being was involved in what she was feeling. She was unafraid to share her joy – to repeat the cause of her excitement several times over – allowing her light to shine brightly.

I know for certain that Angela would have appreciated the 'party' that’s been taking place over the last few days. She would have loved the beautiful flowers, the pretty dresses, the stories and the songs. She would have loved the opportunity to pray together and to talk about God within us. She would have loved the candlelight and the cards. But perhaps most of all, Angela would have enjoyed the good friends, the family – all those who have phoned, sent messages, traveled to be here – people who obviously shared in her light.

And, Angela’s light will continue to shine – as the stories continue, as the songs linger, as we are able to bask in joy and beauty and find in our relationships the depth that comes with true love.

Despite the darkness that may linger with so many of us, Angela’s message was so clear "It’ll be ok. Don’t worry about it."

I leave you with a poem that Angela and I often read before she went to sleep – Angela’s beautiful life was her message – showing that the darkness will pass and beauty remains.

The night will never stay,
The night will still go by,
Though with a million stars
You pin it in the sky;
Though you bind it with the blowing wind
And buckle it with the moon,
The night will slip away
Like a sorrow or a tune.

A life well lived

Three weeks ago Marian Turnbull died. A long-term member of L'Arche Cape Breton, Marian had her share of struggles - institutionalization at an early age, complex mental health concerns, endless health crises. She was born at a time when people with disabilities were a source of shame, an embarrassment, unable to attend school and denied fundamental human rights. But Marian was a survivor. She not only endured her life, but rejoiced in it. In her 21 years at L'Arche Cape Breton, she transformed many lives.

Marian died the way we all should - at home, peacefully, surrounded by faithful friends who ushered her into eternal life with songs and laughter and tears. During the days when we sat vigil with her as she died, and in the days that followed around her wake and funeral, there was a palpable sense of grace in the air. The Chapel was where we held visitation, and it was full of pictures of Marian, candles, her rocking chair and cat blanket, even her famous sunglasses sitting on a junk of wood from the Thomas House property. To look at Marian's ashes resting inside the teakettle (she loved a good cup of tea!) in the midst of so many memories of her was precious.

There was also the moment when a close friend of one of Marian's housemates came to pay his respects at the wake. He arrived awkwardly and seemed ill-at-ease, apologizing for not wearing a suit, expressing over and over his disbelief at Marian's passing. As he was leaving the wake, he revealed that he "never goes to these things". In fact, it had been 25 years since he attended a wake. He'd had a terrible experience at a particularly tragic wake in the early 1980s and had promised himself he would never attend another. His brother and his sister had passed away in the intervening years and he had not been able to bring himself to go to their wakes. But he said he "wouldn't be able to live with himself" if he didn't come to pay his respects to Marian Turnbull. Truly, there will never be another woman like her.

There is much to say about Marian, and about her life and death. To scratch the surface, here is the eulogy delivered at her funeral by Mary MacDougall, one of Marian's closest friends.

Marian Frances Turnbull
November 18, 1939 - April 23, 2008

"Aah..'pon a time…" was often the opening line for one of Marian’s stories, of which she had many. I’ve tried to analyze the basis of her tales. There was always a damsel in distress who, more often than not, wound up driving her bicycle into the rose bushes only to be rescued by Papa Turnbull. Sounds like a Daddy’s girl to me. Marian was very family rooted. She would speak often of her mama and papa and her beloved Rosemary. Her continued ties to industrial Cape Breton were very evident especially when she would assume the position for her long spins to Dominion.

Marian arrived at L’Arche Cape Breton in December 1988 bringing with her new life to the community. The early years weren’t easy. There were lots of adjustments and from all reports never enough sleep. Marian was in the Community about ten years when I first made her acquaintance. Sick with pneumonia on that first day, the Turnbull spent the day with her head in my lap.. It is one of life ironies then, that she spent the last day of her life with her head in my lap.

Marian had this wonderful capacity of teaching others about life’s hard lessons but also she showed us that it is okay to act foolish sometimes, to laugh at ourselves and to celebrate one thing or another 24-7. One of the biggest lessons Marian passed along is that vulnerability isn’t a weakness. She showed me that vulnerability is the ability to accept help when we need it and even more importantly, to accept help sometimes even when we don’t. It is in the receiving that we are often granted grace.

The Turnbull’s faithfulness to her family and friends would often be witnessed in gentle blessings on one’s head, often followed by "Nice Doggie" or the need to take a spin to see her sister, Rosemary, and to share a meal of her favourite things, which would usually be followed by her "Scotch" puddin' or ice cream.

I don’t think Marian ever said anything that wasn’t true. It was her delivery that often got her into hot water! In her later years, she got into the habit of mumbling under her breath so low, that only those closest to her could her some scathing derogatory remark or colorful phrase. This would often prompt us to say "What did you say, Marian?" Very quickly she would reply, as only she could "I likes ya". Needless to say, that would be the end of the conversation.

I’m sure many of you would disagree with me when I say I found Marian to be a patient woman. In conversations the last couple of days we estimated that Marian, in her 20 years at L’Arche, would probably have lived with at least 60 assistants and worked with many day staff over that time. Patience...think of the many welcomes, showing people the ropes, and the eventual goodbyes. This story from the Thomas House storybook is a good illustration of how patient Marian could be when she wanted something.

Marian had spent the day at home asking for a milkshake. "I wants a shake!" The assistant with her that day said, "Yeah and I want a Ferrari! Can you give me a Ferrari, Marian?"
Marian says, "Yeah!"
The Assistant said, "and I want a hot guy. Can you get me a hot guy?"
Marian says, "Yeah!"
The Assistant said, "Where is he?"
Marian says, He's in the Shake!"


Feisty is another word that comes to mind when I think of Marian. If she found the current situation unacceptable and thought that she might be able to negotiate a better deal, she would give it her best try. I think it must have been years of living in a Union Town. She would often wait until late in the workday before in a very plaintive voice, say, "Dougall, bake me something good." Well at 3p.m. the options were often limited, especially is if she wanted a 'Scotch pie'. I’d feel so bad..I’d make grand promises of what we would accomplish the next day..and you can be sure she would remind me.

Marian had the profound ability of naming her friends. Some appropriately and some not so…..Father Ray told the story of the early days when the two men in the Community were Tom Gunn, Community Founder and himself, Pastoral Minister. Marian would often refer to Tom as The Doctor but it must have sounded very rock starish when she called Fr. Ray.. Tommyray!

So many names...there was Mary Bomber, always 'The Little One', Jenn as 'Curly Power', Cathy MacMillan known as 'Miller'. Father Patrick O’Neil when he was an assistant here always got 'Patsy Gillis'. A lovely young assistant who came to us from Japan was known as 'Keiko Coyote from Ukee Ukee', and my own Turnbull baptism, when I henceforth became 'Ah, Dougall’.

In 1998, Marian along with Cathy and Mary Bomber founded Thomas House, then known as Stareghan. It was there that the Turnbull found her heaven on earth. The house, with its peaceful atmosphere and the welcoming of Sandy, was soon turned into a home and life began anew.

There were long spins to work and community events but Marian suffered through..Ha Ha! As long as the big wheels were rolling, Marian was happy. It was to be at Thomas House that Marian welcomed Root Beer and Benny, the now famous one-eyed cat. It has often been said that if the cats wanted to play they went to Mary Bomber. If they wanted some lovin’ they went to Turnbull. She enjoyed the company of animals, I think sensing unconditional love, acceptance and warm furry bodies.

Sometimes after a trying day of Marian’s crying to see our family dog, Emma Jane, away we would head to my house after work. In a high state of excitement at seeing Marian the dog would jump to lick her only to be greeted with "Get out of the way dog!" Once settled in, the two were rarely separated through the visit.

She was happy with her work, too. When we opened the retirement program, called the Siesta Club, there was never a thought that Marian was ready to slow down. She wanted to continue with her daily schedule at Caper Club and the Hope Chest. Again from the Thomas House Story Book:

Marian: I wants to go to the Club.
Katrin: Well, today is your day for the Hope Chest!
Marian: The Hope Chest wants me to go to the Club.

So many stories, so little time - and no censor equipment!

Silas said it so well this week when he wrote that Marian lived her life intensely and touched people deeply. Her laughter and tears, her songs and her stories made life with her rich and full.

Marian you have created your own dynamic legacy of love, spirit, family, faithfulness, joy and sorrow. It has truly been a privilege to be a part of your life. That many of us were granted the joy of being with you as you entered into the fullness of life through your death, is one of your greatest gifts to us.

As the dove of life that represents all that you are now, soars to heaven, it is time for you to rest and for you to know that the world and especially L’Arche Cape Breton, is a much better place because you, Marian Frances Turnbull, were in it. You were a good woman and a loyal and dear friend to the end. We Love Ya!

Our Fa Father
Chart in Heaven
Thy Name
King Come
Daily Bread
His Tresses
Tintation
Anen

A man of peace

Last night at Community Night we watched a video of a short talk by Jean Vanier, founder of L'Arche. He gave the talk at the CBU Centre for Mikm'aq Studies during a visit to Cape Breton in 1997. Eddie was tucked snugly under his arm, nodding sagely at all the right moments, for the duration of the talk.

No matter how many times I hear Jean, and no matter how many times he repeats the same stories, wanders off on the same tangents, or makes the same points, I am touched by his wisdom, simplicity, and presence. Reading his recently published memoir, "Our Life Together", I cannot help but be inspired by his humility and conviction. He is utterly convinced of his own weakness and fallibility, he knows he does not have the answers. Yet he is equally convinced that the message he speaks about the power of weakness and the call to be a peacemaker can and will change the world. He sees every day the horrors of "civilized" society, yet he remains deeply moved by the beauty of people and the grace of humanity.

In the few minutes he spoke at CBU, he talked about what it means to love. To love, he said, is not to do things for people. To love is to reveal to people their value, to reveal to them that they are important and that they have something to offer.

To love is also to understand, he said. To understand the hurt and anger and broken hearts of our people and in that understanding to help people heal.

And to love is also to empower, to empower people simply to "become". To become fully human, to become who God has called them to be.

The richness of our world, he said, is not in dollar bills but in human hearts, and we need to reveal these riches to the world. We cannot do it alone, but together we can do beautiful things.

Smile, I'll pay for the cracks!

Yesterday Mike came home from the hospital. At only 45 years, Michael already seems like an old man. In a sense, he always has. He moves excruciatingly slowly, with a awkward sideways gait; he speaks quietly and slowly, carefully deliberating on every word; he enjoys an old time fiddle tune and a nap in the easy chair; he keeps his grey hair short and tidy and likes to dress up and treat the ladies to a drink.

But Mike got even older in a hurry back in December, his deteriorating hips all of a sudden failing him, pneumonia refusing to let go its grip, sleep overtaking him between bites of lunch. Then falls during the night, even seizures and mini-strokes. He went by ambulance to the hospital on January 5th and most of us were pretty sure he was leaving for the last time.

We sat vigil by his bedside in the hospital for weeks as he underwent test after test, unable to eat or talk or even wake up, his respirations dropping to five or six a minute at times. We prepared ourselves and everyone in the community for what we felt was coming.

But what was coming wasn't what we expected. Michael slowly began to gain ground, first trying to talk a little, then laugh, then eat, and finally even hold our arms and walk around. So then the fight was on to convince the people with power that Mike should come home, that we could, and wanted to, manage his care. That this was where he belonged.

It was a long slow process that culminated yesterday with his return. When I walked into the house to visit him after he arrived I wasn't prepared for my own reaction. This joy and jubilation just bubbled out of me and I had trouble stopping the tears from flowing. He sat there at the dining room table, ears sticking out, with a smile that threatened to split has face in two. You would be hard pressed to find two happier people.

And so I am again reminded of the incredible strength of the weak, the power of those we think are powerless. Michael, this slow, stubborn man with Down Syndrome, can stir emotions in me that very few can. He can convince me that life is rich, that love can heal, that God exists. He can work miracles.

An unlikely teacher

At first glance, Angela can be mistakenly defined by her limitations - big motorized wheelchair, very limited upper body mobility, total dependence on others for personal care, limited vocabulary and simplistic speech patterns, often difficult to understand.

But Angela is a woman of tremendous capacity, and it is this capacity - for generosity, for contemplation, for joy - that really defines Angela. A few weeks ago Angela attended the first meeting of a community prayer circle. This group has been formed as a place where the needs and intentions of the community are held in prayer in a very deliberate way by people with a gift for this kind of intentional prayer. When Angela returned to work after the meeting, her supervisor asked her what she had been doing for the morning. After a short pause, Angela replied simply, "I was talking to God." I am sure that God was listening.

Then last week, there was a serious crisis at Angela's house involving one of Angela's housemates. Angela experienced genuine emotional trauma during the incident, and at times even her physical safety was in danger. After the incident was over and the police had left (along with Angela's housemate, Arthur) I sat with the people who were involved, many of whom were in shock, crying and upset. I talked a little about what had happened, and then quite honestly admitted, "I don't know what to do now." Angela, perhaps the person who had most seriously affected by Arthur's outburst, suggested, "Now we say a prayer for Arthur."

St. Paul says that God chose the weak to confound the strong, chose what is considered foolish to shame the wise. In Angela, and so many others, St. Paul's words ring true.

Two old hens!

Cathy and Janet sit close together, both smiling with anticipation, giggling a little, waiting for me to start asking questions. They are eager to tell the story of their friendship.

Janet, as she will proudly tell you, is the founder of our community. She arrived at Corinthian House on April 5, 1983, from her family home. Cathy just celebrated her 11th anniversary at L’Arche Cape Breton. Both are petite women with bright smiles, strong opinions, Down Syndrome, and unique senses of humour. They love a good cup of tea, an enthusiastic hug, eating out, and traditional Cape Breton music.

As we begin our interview, I start simply. "Well, here we are."

"Yup," says Janet, "two old hens!" She and Cathy immediately dissolve into laughter.

"Can we talk about your friendship?" I ask when they have calmed down.

"Of course," Janet replies. "We’re good friends, me and Cathy Brady."

"What do you do together?"

"Do? We’re friends, good friends."

"But what do you guys do when you are together?"

"Do together? We’re friends!"

I persist with my line of questioning. "But when you visit each other. Do you listen to music? Look at magazines? Joke around?"

Janet acknowledges that they do, in fact, enjoy these activities. But she goes back to her mantra, "We’re friends." All the while, Cathy is looking at Janet with what is clearly a look of love.

I start to feel a little frustrated, until I realize that Janet is not ignoring my question. I think she is trying to tell me that what she and Cathy do together is not really that important. What is important is the bond they share, the friendship. So I move on.

"What about teasing? Do you tease each other?"

Now Cathy chimes in, "Well, a little bit," she admits. Janet shares her annual Thanksgiving joke, where she looks through the window in the oven at the turkey roasting within and exclaims in mock horror, "Oh no! That’s my friend Cathy in there!"

"Hey, Janet, watch it!" scolds Cathy, and they dissolve into giggles again. Janet bursts into song, "Janet Moo-oo-oore, she’s a Presbyterian…" and a whole new round of giggles begins.

I can see that this interview is taking on a life of its own! I try to regain control. "How does Janet make you feel, Cathy?" I ask.

"Really happy," Cathy replies.

"Thank you, sweetie...chicken legs!"

"Hey, not me!"

The teasing picks up speed and enthusiasm. Cries of "chicken legs", "French fry", "Girl Guide", you name it. They are poking each other, laughing, threatening to call the cops. Time to clue things up.

"Is there anything else you guys would like to say before we finish?"

Cathy looks at Janet and is quiet for a second. "Janet Moore? I love you."

"I love you too, sweetheart."

They hug. I think that says it all.

Old friends are the best friends...

Last week I was lucky enough to travel to Alberta for no other reason than to have some time for myself. I spent a few rowdy days in the big city with friends and family, and then a few days of extreme quiet with myself and God and a long-time mentor.

People in my circle here in Cape Breton are probably tired of hearing me talk about what a fabulous trip I had! My week had just the right amount of everything - food and drink, sleep and exercise, fun and contemplation, you name it. But I think what really made the time so rich was that just about everyone I saw was someone who has known me for a long time, and who knows my story in a very personal way. Even if some of those people I had not seen for 2 or 3 (or 10!)years, there was still a deep sense of comfort and safety in their company. For that I am grateful.

And, as always, it made me think. In particular it made me think about the importance of being known, of being surrounded by people who know my story and who can listen to me and understand me without needing an explanation. They may not know the recent details of my life, but that, somehow doesn't seem to matter. It made me reflect, too, on the importance of knowing my own story, of being proud of it, of dwelling in it and allowing it to enrich my life and the lives of those who are important to me.

And so what of the people in my life who, due to their disability, cannot articulate their own story? How do they take this ownership of who they are and where they have come from? How do they, when the people around them change so often, have this feeling of being known in a deep and intimate way, of being understood without needing to explain?

I am so aware of the privilege - and the responsibility - that I carry in my long term commitment to the people of disability in my life. I am more and more conscious of how those of us who support people need to learn how to help them tell and celebrate their stories. We need to recognize our role in revealing the "unrepeatable grace" in the life of each person.

The sum of my parts

There has been a news story getting some coverage in Nova Scotia lately about a 21-year-old man with significant developmental and physical disabilities receiving treatment from the medical system. The debate is whether he should be treated as a child or an adult, given that he has, according to the news reports, "the body of a 12-year-old" and "the mind of a toddler". The stories stirred profound sadness and even anger in me. My husband wrote a letter to the radio station after hearing the report. I think it is worth sharing. My husband is quite a guy.

Here's what he wrote:

I was struck by your introduction today which referred to the 21-year old man as "having the mind of a toddler." A person is much more than the skills that they possess, but the concept of developmental age refers only to their skills in various areas, usually gross motor, fine motor, language, cognitive, and social. There are a number of ways in which this is an inaccurate method of summing up an individual's age. I know from personal experience that the same individual often has a wide range of "ages" in terms of different categories of activity: one person might have the cognitive skills of a five-year old but the social skills of a teenager. They might have the reading comprehension of a six-year old but the verbal skills of a ten-year old.

All the different facets of a person's development tend to be summed up by one average age, which really doesn't say much about them as a person. When we use these developmental ages outside their medical context, there is a tendency to understand them as referring to an individual's overall maturity, but that is not what they are designed to do. Even in terms of skill development, making one's way in the world is much more complicated than the specific skills one possesses. If a person had the skills of a six-year old, but they had those skills for thirty or forty years, they would learn to do a lot of things and think in a lot of ways that a six-year old child doesn't.

Furthermore, there is no way to measure a person's emotional or spiritual maturity, and that is probably what most of us think of when we refer to a person's age, or their equivalent age. People with developmental disabilities often have gifts of great spiritual or emotional maturity, though in some cases they may not know how to talk, dress, or feed themselves. Much of this is influenced by the way they are perceived and related to by those around them. The use of a phrase like "the mind of a toddler" contributes to the pervasive and inaccurate idea that people with intellectual disabilities are over-sized children. People with disabilities are not children -- they are capable of maturing, developing, and contributing to society as the adults they are.

I think this is the greatest tragedy of the story you covered today. It is clear that the people who are closest to this man -- his doctors, his nurses, and even his parents, see him as an eternal child. Imagine if all your life, all of the people who surround you saw you as a child, with the simplicity of a child, the desires of a child, and the incapacities of a child. Would this not limit your ability to reach your full potential as a mature human being?

Children learn what they live

To say that childhood experiences shape our lives is, I suppose, stating the obvious. As the poet Gerard Manley Hopkins observed (in less inclusive times) "The child is father to the man". I have been ruminating on this fact more than usual over the past little while.

Right now there are seven kids being raised in our community of L'Arche. Seven kids, all under six, three of them less than three months old, whose early lives are being lived out in what is unfortunately a very unusual environment. Seven kids who daily encounter wheelchairs, sign language, foreign accents, many shades of skin colour, and grown-ups who need lots of help with lots of things. When my daughter gets home from school (and has her ritual milk and cookies) she trots off next door to visit Amy, Angela, Rod, Haley, and the rest of the folks at Korban. In the mix are two wheelchairs, two people who don't speak, three people who grew up in big institutions for people with disabilities...and that's just the tip of the iceberg. Maggie doesn't see this as anything out of the ordinary. But surely it is!

I wonder how the little kids growing up in this magical, crazy place will turn out? Will they be a part of a societal sea-change, a revolution that will reveal the gifts of people with disabilities and enable them to claim their rightful place in the world? Will they continue to value difference as a part of what makes the world turn in the right direction? Will they take Jesus back from the hands of the fundamentalists and use his words and example to make the world a more compassionate and welcoming place?

Right now Maggie wants to grow up and "live in a L'Arche community". Sounds pretty good to me.

She's the Bomb!

We have company this week. Our friend Mary is staying with us until the end of the month. Mary is a little woman with a big presence. She's closing in on 60, with a great smile, an eye for detail, and an appreciation for the absurd. She also has Down Syndrome, rides in a wheelchair most of the time, and doesn't hear at all. She communicates with a heavily adapted version of sign language that accommodates her arthritic fingers, complimented by some pretty clear body language.

Mary is a regular visitor at our house, and it is such a treat to welcome her, in particular because of how much she and the kids enjoy one another. The boys are very physical beings, always creating some kind of spectacle, be it wrestling under a blanket in the middle of the living room floor, balancing sideways on the back of the couch, or moving their high chairs across the floor by ferociously bouncing up and down during meals. This kind of entertainment is right up Mary's alley and she watches, fascinated, with an amused smile tinged with just a hint of disapproval. The boys seem to know that she loves them, pointing to her and announcing her nickname in their husky, slurred little voices, "Bomber!"

Maggie is fascinated with Mary's communication style, and loves the challenge of trying to get her point across to Mary, as well as to decipher what Mary is trying to say.

And so Mary fits right in, rounding out our crazy family with her years of wisdom and peaceful, centering influence. At the end of the day when the kids are settled, she sits with me on the couch and smiles. She looks in my eyes and reminds me of our years of friendship and all that has changed for both of us since we were roommates many moons ago. Even though now I am all grown up (thanks, in large part, to Mary) I still feel like a kid in comparison to Mary's life and experience. She is like a silent mentor who, without saying a thing, reminds me of who I am and what is important.

Pinky Dinky Doo

Last week a student at Central Kings Rural High School in the Annapolis Valley, NS, arrived for his first day of Grade 9 excited about beginning a new year at a new school, and wearing a pink shirt. One might think the colour of his attire would be an irrelevant detail of the story, but sadly, this was not the case. The teenager was singled out by a small group of students and harassed about his wardrobe. The local papers politely described that he was called a "homosexual" and, along with being verbally abused and mocked, was threatened with physical violence.

Two Grade 12 students, David Shepherd and Travis Price, heard of the incident and took matters into their own hands. After school, they visited local stores and purchased 75 pink tank tops and an assortment of pink hats, scarves, armbands, and other accessories. They circulated word of their plan via the internet, and met fellow students before school the next day to hand out the duds. By the time school started on Thursday, approximately half of the 830 students at the school were wearing pink in support of the bullied student and the principles of human dignity and human rights.

Of course their actions completely turned the tables on the bullies, and spoke volumes to the victimized student of his value as a member of the school and his place among the student population.

I have not been able to stop thinking about these guys since I heard this story a couple of days ago. Talk about the Gandhian principles of truth and ahimsa and the peaceful resistance of Martin Luther King, Jr. These two high school students have made a profound and powerful statement, one that hopefully will be heard far and wide. As Silas commented, if you pass a car accident and you jump in to pull someone out of the vehicle, you'll be lauded as a hero. It takes a lot more courage to take a stand against your peers, especially when your peers are high school students!

John MacKnight describes true inclusion, true welcome, as "standing at the centre of our communities and saying, in a voice that can be heard at the margins, 'We need you'". These guys captured that voice with eloquence, and without violence. Good for them.

A picture tells a thousand words

Last night I rearranged the pictures on the walls and mantles in our house, moving the old, outdated portraits of the kids and replacing them with the ones we had taken this summer. It's such a lovely chore - time to look at those old pictures and try to remember what the kids sounded like, what they did at each of those stages. And I am a bit of a framed photo junkie - Silas gets frustrated with that by times - all our blank wall space filled with pictures, all our flat surfaces covered in propped-up framed memories. But as my friend Brenda would have said, I can't help it; I was born that way.

When I rearranged things last night, I hung all the old portraits of the kids (we have them taken once a year) on the wall above the landing at the bottom of the stairs. So when I descended the stairs, bleary-eyed and bushy-haired, this morning, I was greeted by so many smiling faces of our three kids. Talk about starting your day off right.

The photos of the boys seemed especially poignant. My boys, Jacob and Josh, are twins, both with Down Syndrome, who we adopted when they were five months old. Their sweet, mischievous faces smiled out at me from behind the glass of the picture frames, reminding me of so much...getting the call from Children's Aid that there were twins - TWINS! - with Down Syndrome who needed a home...meeting them for the first time at their foster home when they were still sharing one crib...the times when we could plop them on a blanket in the middle of the living room floor and they would actually stay there, balancing on their bellies with their arms and legs outstretched like little airplanes...big sister Maggie singing "I love you forever..." to her brothers in their cribs at bedtime...the list is endless and fills me with warm feelings and gratitude.

And those memories stand out today because of something I read on Chewing the Fat, Dave Hingsburger's blog. (If you don't read this blog, you must. Trust me. The link is posted on the sidebar of my blog's front page.) Apparently, in Italy there is a recent case of a couple who were expecting twins, one of whom was discovered, in utero, to have Down Syndrome. So the couple chose to have that fetus aborted. After the abortion, the doctors discovered they had aborted the "wrong" baby. The "healthy" child was aborted and the child with Downs survived. So, of course, a second abortion was performed.

The tragedy described was the one of the mistakenly aborted "healthy" child, never given the chance to be born and thrive and live a productive life. This morning I looked at the photos of my beautiful boys and thought about the real tragedy. The tragedy of discrimination, the tragedy of the medical model of perfection, the tragedy of lives lost to what masquerades as progress.

Rita and friends

This summer Janet turned 60. This is a big birthday for anyone, but for someone with Down Syndrome, already showing signs of Alzheimer's and other age-related health issues, and who has to date buried three close friends who also had Down Syndrome and who all died long before making it to 61, well, the significance of this milestone cannot be overstated. Add to that the fact that Janet begins counting down for her July birthday sometime in early August the preceding year and you get a sense of the level of enthusiasm we are dealing with!

Among the myriad of ways Janet celebrated her birthday this year was one particularly special event. Thanks to her friend Mary (it's good to have connections!) Janet and 10 of her closest friends were invited to Big Pond, Cape Breton, for lunch at Rita MacNeil's Tearoom. Now, the biscuits alone at Rita's Tearoom are sufficient to warrant a certain amount of eager anticipation. But Janet was not invited just for the biscuits. Janet was invited for lunch with the star of the show, Cape Breton's superstar, Rita MacNeil herself.

Like many people I know with Down Syndrome, Janet is a Rita MacNeil uber-fan. Her CD collection includes all Rita's titles, her wardrobe has Rita T-shirts in the double digits, the walls of her room are plastered with pictures of the Cape Breton singing sensation, and at any opportunity for a performance, Janet will find the closest thing to a microphone (a ladle, a rolling pin, a twig) and belt out "Working Man" with unequaled passion and gusto. Janet and I were fortunate enough to live together during the run of Rita's Friday night CBC TV variety show, "Rita and Friends". Friday nights from 8-9pm were sacrosanct. We gathered around the TV in the basement, popcorn at the ready, listening to Rita's powerful singing and sweet, self-conscious banter with hushed reverence.

And now a "private audience" with Rita. Amazing.

I was touched to be invited by Janet to join her for this lunchtime event. Those of us who love Janet were more than a little apprehensive as we prepared for the celebration. Janet is getting old, and showing her age. As with so many people with Down Syndrome, dementia is slowly creeping in and stealing Janet's peace, her humour, her independence, her ability to enjoy life. Intense emotion can overwhelm her, and this day would surely be filled with that. Having to keep to a rigid schedule, once something she demanded and loved, can now leave her in tears. So we crossed our fingers, surrounded Janet with people she knows and who know her, and off we went.

The brilliant sun over the blue waters of the Bras d'Or as we drove through Eskasoni and East Bay seemed to be a good omen. We arrived at the Tearoom in good spirits, having sung along with Rita on the CD player the whole drive down. With a friend on each arm, Janet plodded up the ramp into the Tearoom and we presented ourselves to the waitress. There was a little confusion about who we were and when we were expected, so we wandered around as we waited for things to be sorted out.

Before long, Janet caught sight of Rita. She squinted up her eyes, as she often does to help her focus, and tilted her head slightly to one side as she worked to connect what she must have imagined was a mirage with what evidently was becoming a reality. As everything clicked into place, she quietly, and with a sense of disbelief and wonder, exclaimed, "Rita!" In a manner fitting her age and the occasion, Janet slowly walked toward her idol, looked closely into Rita's face to make sure she wasn't dreaming, then gently wrapped her arms around Rita's shoulders, placed her head on Rita's chest, and smiled. This smile did not dim or fade once during the two hours we spent with Rita at lunch!

And the lunch was lovely. Rita was an absolute gem, making small talk with our strange crew of friends. She had no trouble joining in Janet's typical teasing - "chicken legs", "old hen", "you're cracking up". Although Janet simply would not stand for anyone to call Rita an old hen!

Several times during lunch, Janet would gaze at the photo of Rita on the CD she clutched in her hand (a CD, incidentally, that Rita had given her, signed, as a birthday gift) and then look up at Rita, in the flesh, sitting right next to her at the table. This seemed to be a wonder that Janet could barely comprehend. And then she would tune into the music coming over the speakers, which was (of course) Rita MacNeil. She would look up at the speakers, at her CD, then again toward her host, in absolute amazement. This woman was even more incredible that Janet had imagined!

After a delicious lunch (which Rita graciously looked after - her treat) and what seemed like endless hugs, we prepared to leave. I linked Janet over to the guest book, where her shaking hand and deteriorating vision made it virtually impossible for her to write much. But she did her best, telling me she had written her name and "I love you, Rita." And on that note, we left to drive home.

I believe that we discover what is holy, sacred, mysterious, through our relationships with others, and those few hours with Janet were filled with holiness and mystery - and not just the mystery of how Rita could be sitting at our table and singing on the PA at the same time! But that visit to the Tearoom with Janet brought me back to what is means to live a life of gratitude, to be present to each moment, to embrace my own vulnerability and allow it to bring me closer to others instead of isolate me from them. And it opened me yet again to the gift of the life of a little woman who has, in ordinary ways, helped to make my life extraordinary. Thank you, Janet.

Possibilities...

This summer I came upon a T-shirt with the slogan "Nobody cares about your blog". This may or may not be the case, but in any event I persist in my endeavours to share my life and my thoughts with others. My motivation is not to elevate myself or my own experiences to something worthy of admiration - or even interest! Instead, I simply recognize the unique situation I am in as a member of a L'Arche community and the parent of two kids with disabilities. I know this puts me in the path of stories and experiences not everyone encounters or notices. It opens my ears and my eyes to unlikely teachers. It helps me to live a grateful, reflective, sometimes even contemplative life. I think it gives me something to say, and so I want to say it.

The following piece was written by my husband Silas for the August 2006 issue of Am Furan, the newsletter of L'Arche Cape Breton. I wish I had written it! It deserves to be shared.


“Dad, can we talk about possibilities again?” “You mean disabilities?”

Raising the little community of my family inside the big community of L’Arche offers some unique opportunities. I hope I am learning to make the most of them.

I’ve always been proud of the difference between my daughter’s experience of disability and the experience I had as a child. Kids with disabilities were not integrated into my elementary school, and students with disabilities in my high school spent their days in a special room. None of them ever came out and none of us went in. Naturally, I learned to be suspicious, even afraid, of people who looked, sounded, and acted different.

My daughter Maggie, at three years of age, has a couple of dozen friends she sees each week who each have a developmental disability. She knows people who use wheelchairs or walkers, people who don’t speak, grownups who need help with things like eating or getting around. She knows that people are different, as she knows who in her family is left or right-handed, or whose hair is straight or curly. But she has never heard of “disability” as a way of categorizing people.

But lately my wife and I have questioned this innocence. Maggie has always known that she grew inside her mother’s belly, but that her younger brothers grew inside someone else’s belly. She knows that we adopted her brothers. Why doesn’t she know that they have Down Syndrome? As Josh and Jacob grow up, won’t they, and she, do better if we raise them up to be conscious and proud of their difference?

To repeat a cliché, no-one gives you a manual when you have kids. How could I talk about disability in a way that a three-year-old would understand? Moreover, how could I talk about disability in a way that didn’t make it sound like a disease? Even the word, “disability”, means something is lacking, something is wrong with a person.

I know how much richness has come into my life because of people with developmental “dis-”abilities. I know how I’ve learned to think differently, to feel better, to relate to myself and to others on a deeper level, because of the relationships I have with people with disabilities. I don’t believe disability is a problem to be fixed. I believe it is a gift our whole society yearns for, but which most of us don’t know how to unwrap. But how to explain that to my three-year-old?

It was easy to explain disability. I talked about Buddy and his wheelchair, and how he has a disability because his legs aren’t good at walking. Then I talked about the people she knows who have Down Syndrome, particularly her brothers and Janet Moore. Her brothers took a long time to learn how to walk, and they only know a few words. Janet is a grown-up but she needs help to get up the stairs to our house, and she doesn’t know how to read a story for Maggie. But what about the positive side?

Here’s the best I could come up with: “Every week when Janet comes to our house she gives me a hug, doesn’t she? There aren’t many 50-year-old women I know who give me a hug every time they see me. But I know a lot of people with Down Syndrome, and almost all of them are really good at hugging. So that’s something that’s nice about having Down Syndrome.”

It didn’t really seem like a fair trade: the ability to read and to get around by yourself for a few hugs. I felt my explanation was stumbling. But then, after a pause and a distraction, Maggie brought the conversation around again: “Dad, can we talk about possibilities again?”

It took me a minute but then I caught it: “Ah, you mean disabilities?” “Yeah, possibilities.”

What a wonderful pun. Even if it happened by accident, and in spite of my explanation, I knew that my message had gotten through.