Monday, November 8, 2010

My teacher, my friend

Mary Cecilia (Bomber) Leblanc
November 10, 1950 - November 4, 2010

And so, again we gather here in our little Chapel to say a last goodbye to a sister, an aunt, a co-worker, a friend. Just a few days ago, many of us sat in these same seats on All Souls’ Day, the altar covered with pictures of our community members who have died, remembering and giving thanks. Mary sat in our midst, snoozing on and off in her wheelchair, enduring the wet weather to be here among friends. Now Mary has gone to join those saints and it is her picture that sits in the place of honour.

To remember Mary’s life is surely to remember a mystery. Mary was a small woman who was larger than life; a silent woman who spoke volumes; a deaf woman who spent an awful lot of time telling people to be quiet!

One thing we can say for sure is that the story of Mary’s life was not without pain and suffering. Her family, many of whom we are so grateful to have with us today, know only too well how Mary’s early life was touched by tragedy, losing her parents when she was only three and then moving suddenly to institutional care.

But clearly, somewhere along the way she made a decision – that she would not let the circumstances of her life define or limit her; that she would stand up to those who tried to keep her down and say, albeit without words, “You’re not the boss of me!” In the disability field today there is so much emphasis placed on self-advocacy – truly, Bomber was a self-advocate before her time.

Some of us have heard stories from her 30 years in institutional care – that the only way staff could get Mary from place to place was to have two or three men toss her in the laundry bins and wheel her; that janitors were forced to wax floors with Mary sitting on the waxer, as they were unable to get her off; even that employees who worked with her threatened to strike unless they were paid more for the stress and strain of dealing with her demands. I suspect many of these stories are apocryphal, but even if the details are exaggerated, the point they illustrate is true!

Those people who lived and worked with Mary during her first 20 years at L’Arche can vouch for that. Many people – myself included – were afraid of Bomber, nervous of the inevitable disagreement over seating arrangements, utensils, wardrobe choices, bedtimes, or a host of other seemingly inconsequential matters. Monica speaks of hiding in the kitchen at Thomas House, lights off, hoping against hope that Mary would stay in the living room; Rachel has been held hostage in her car outside Waycobah House, Mary refusing to exit the front seat despite the best efforts of a crowd of assistants surrounding the vehicle. And Mary has left her mark – literally – on many of the assistants who have supported her over the years.

Over time, we all learned some of the tricks to get us out of a stalemate with Mary. Laughter was one option, and the most reliable way to elicit a laugh was generally to feign serious injury. More than one person has been shot by a stray bullet just to convince Mary Leblanc to get on the van! Another possible peacemaking solution was to offer Mary sympathy, sticking out your lower lip and showing her that you were sorry.

Of course, many of us immature assistants resisted both these options – we knew we were in the right and we didn’t just want the incident to end, we wanted to win! We wanted Mary to be the one to surrender. We soon learned that was not going to happen. And why should it? Mary had had enough of being on the losing end of life’s battles – why should she let some kid take another piece out of her dignity and self-determination?

Of course, Mary’s fierce streak could sometimes work to your advantage. When you were in her good books, she would go to the wall for you – that little leg swinging out to protect your seat; pillows flying through the air at others in your defense; those fat, arthritic fingers flicking water across the table (although not before shaking off all the excess so it wouldn’t make such a mess). The problem was , you never knew when you would be in her good books, or how long that would last. It was Mary’s prerogative to change her mind.

I like to think that Mary’s death was her final act of defiance. For some months now we have been in discussions with the Department of Community Services about whether Mary’s needs would be better met in a nursing home. Her family and her community were strong advocates for supporting Mary in her home at The Vineyard. And yet, the process was moving forward. On Thursday, November 4th, Mary’s case was being heard, and it seemed obvious that she would be placed on a waiting list for nursing home care. Instead, on Thursday, Mary died – the first thing in her life she ever did in a hurry. A pretty powerful act of self-determination.

But Mary’s tough streak did not define her. For people who stayed with her – and we did – there was such tenderness, humour, and beauty within her.

How many of us were the privileged recipients of her speeches when the candle was passed at a birthday party? On the outside, each person got the same delivery – the lips moving, that barely perceptible sound, a slight smile every now and then, a little laugh. But each of us who received that speech heard something different – we heard in her unutterable words our own beauty, the faith she had in us, her words of encouragement on this tough road of life.

And how many of us felt that soft tickle of her breath against our faces as she whispered unknown secrets in our ears, then pulled back to see her put her hand over her mouth, eyes wide, encouraging us to be just as scandalized as she was about the secret she had just shared?

How many of us heard that incredible laugh, the laugh that she couldn’t hear but that she certainly felt, the laugh that bubbled up from her toes when she really got you good, or when things got silly on the couch and there was wrestling and tickling and all sorts of foolishness.

How many of us saw her wearing a big goofy sign around her neck, announcing “Kiss Me! It’s my birthday!” and the delight in her eyes when you leaned in for hug and a smooch.

How many of us were at The Vineyard or Thomas House when her family would come to visit, laden down with enormous bags of cheezies and new clothes, and see the pride in Mary Cecilia as she claimed her people, and showed them off to us.

How many of us saw her wearing headphones, snapping those little fingers and grooving to a non-existent beat?

And surely, all of us were well aware of Mary’s altered sense of time. An hour went by like a minute, and no amount of time was too long to spend rearranging the place settings just right, moving the pillows on the couch ¼ inch this way or that, getting those hospital corners just so on her freshly made bed.

As Mary aged, the hard edges of her personality softened more and more. She became increasingly a woman of vulnerability, a woman who liked hand and foot massages, who drew people to snuggle on the couch, who graced so many with her gentle smile and tender hugs. She let go of the details – of finding every hole in every sock or every chip in every plate – and instead chose to focus on the bigger things: loving and being loved, sitting vigil with friends making the passage to the next life, holding hands with friends she loved, teaching the young men in the community how to be tender and how to cry. Indeed, when Mary died and we were washing her body and getting her dressed for visitors, there was a line-up of five young male assistants waiting to sit with her, heads bowed and eyes brimming. Because of Mary Leblanc, they will never be the same. And neither will we.

One of the former assistants who wrote to us about Mary this week said that, for her, Mary is an iconic person, in a literal sense – her life points to some greater, ineffable reality. The truth that Mary has revealed through her life is indescribable. As Helen Keller once said of beauty, it cannot be seen or even touched. It must be felt with the heart. And Mary taught us how to feel it.

Our little community of L’Arche Cape Breton has lived with tremendous grief and loss these past few years. Sometimes I wonder, is this what I signed up for when I said yes to L’Arche? Saying goodbye over and over to people who have become my family? Looking around and knowing that this journey of grief before us is still long? Sitting with a friend in the Chapel as he struggles to understand the mysteries of life and death, tears falling silently down his cheeks, and knowing that I cannot take away his pain? Bringing my kids to wakes and funerals and wishing things were easier?

But then I think of Mary. How can I compare my suffering to hers? How can I wish to have not lived this pain, if it means not to have known her? How can I say that I want to walk this journey with our people if I am not willing to embrace everything about the journey? I need to trust that the silent example of Mary Cecilia Leblanc will give us all strength to continue to love, to struggle, and to open our vulnerable hearts to each other.

Mary hated the light, hated opening the curtains first thing in the morning or driving without the visor down. She would demand her hat and sunglasses, or squint those little eyes against the assault of the sun. Just before Mary took her last breath, she did just that - screwed her eyes tightly shut. I think she saw the light, and in typical Mary fashion, it really bugged her. But I imagine that Janet Moore was there to beckon and reassure her, and that Marian Turnbull is holding her hand, and that, when it comes my time, there will be Bomber, leg swung across the seat next to her, saving me a spot.

Tuesday, August 24, 2010

Don't swear to God...Janet Moore is up there!

The end of August is always a transition time. In L'Arche, it's the departure of one crop of assistants and throwing open the doors to welcome a new crew. In the family, it's buying pencils and duo-tangs and new jeans for the much-anticipated back to school. And in nature, the evenings get cooler and the leaves, regrettably, start to show hints of turning colour.

But even though I am an old hand at the end of summer change, this year I feel that transitional dis-ease in much deeper way. Over the past few months, I feel like I have been confronted with all these "opportunities" to look at myself and my life in a deeper, more honest way. Am I satisfied with where my life is today? Am I an active participant in deciding where I am headed, or do I just let the current carry me along?

For sure the event of the summer that really stirred me up happened in July. My friend Janet died. (I've written about Janet before, here and here.) More than a friend, Janet was a babysitter, an entertainer, an inspiration, and the founder of this community that has become my home. Her death, and also the days and weeks leading up to it, marked a passage in my life and the life of my community, and has pushed me to live up to Janet's example of a life of intention and engagement.

Janet's death was not a tragedy. She lived a good life, and she had a peaceful and sacred passage from this life to the next. We supported Janet with dignity and helped create an environment where she could reveal her gifts and thus transform the people and the world around her. But still I am sad. I miss Janet. I don't want her to be gone. I want her to me at my house, snuggling with my husband on the couch when I pop in for lunch asking me "What are you doing here?" I want her sitting next to me in the Chapel, holding my hand and checking me out for a good long time before realizing, "Jenn Power! It's you!" I want her to reach out for kisses and hugs from my boys, to marvel at Maggie's accomplishments, to ask, "Today Thursday?"

Instead, she lingers just at the back of my mind and the middle of my heart, reminding me to stand my ground; choose life; allow others to help me, even when I don't want to; be faithful to my friends; celebrate every small victory; be silly at least once a day; give my kids a lickin' when they deserve it. Janet Moore set the bar pretty high and now I need to do my best to reach it.

There is so much more to say about Janet. Maybe I will just post the Words of Remembrance that Silas wrote and shared at her funeral. He said a lot. Here it is:

Janet Evaline Moore
July 17, 1947 – July 16, 2010

I am deeply honoured that Wilma and the rest of Janet's family have trusted me with the task of remembering Janet in words. It is a privilege and it is also a burden. These words have been difficult to write. Writing them means I am saying goodbye to this woman, and goodbye is the last thing I want to say.

I am not unique in holding Janet so dear. As we sat with Janet this past week and more we have been overwhelmed by the messages and visits we have shared with her. So many people, from her own baby sister to the priest who is celebrating this service with us today, to the many children she has “lovingly and firmly” babysat, to the dozens of former L'Arche assistants who are spread across Canada, England, France, Germany, Poland, Finland, and Australia, say they wouldn't be the person they are today if not for Janet.

How is it this one little woman has meant so very much to so very many people?

Janet had many qualities that made her who she was. She was a woman of character, a woman of charisma. She was a woman with dignity and stateliness, a sense of self-worth that was not grasping or competitive (Of course she also knew how to be silly.). Janet was a woman of determination, and a skilled negotiator. Crossed eyes and a furrowed brow were never so eloquent or effective as on Janet Moore. Janet was a woman of music and of laughter (“There's a snake on your back!”).

If all I had to do here was to tell the stories we've been sharing these last days, I could keep you here for a week. I never knew a woman who had so many stories told about her.

Some stories are just one word. Janet had a way of making up her own words, especially names. My name, by the way, is “Salad.” Over there you see Vince Smith, or “Prince Sniff.” Neither of those is as much fun as her old minister, Wim Creeft, who went by “Wimp Creep.” (“I saw my missiner today, Wimp Creep!”).

Some of Janet's stories are just one line. Janet's lines were very important to her. Good luck becoming Janet's friend if you hadn't learned her language. “You old hen!” “Wash it, you're older than me!” “Are you cracking up?” “I cracked up two weeks ago.” “Now you're cooking with gas.” “Put that in your pipe and smoke it.” “I can't smoke!” “Sorry about that, chief.” “Are you feeling okay??” “I swear to God, Janet.” “Don't swear to God.” “Why?” “My parents are up there!”

Other stories are summed up in one line, although really there's more to tell: how she began her university talks with “Good morning boys and girls, my name is Miss Moore.” How she described her nephew: “Michael George, he works in the army. Yep, he shoots people.” Or: “That Anne Gunn, she's preg-a-nant again.” Or: “That weatherman should be shot. We should take him to Louisbourg.”

Some stories really are stories, and they need to be told. When our community was in its infancy, with just Janet and Tom and Anne and a few kids, Jim and Elsie came to Corinthian House for a meeting. They had trusted Tom and Anne with their daughter for one month, and this meeting was a chance to sit down and see whether that trust had been well-placed. Toward the end of the meeting Tom asked Janet if there was anything she would like to say. Well, yes, there was. With all the earnest gravity of her 34 years and her extra chromosome, Janet looked her parents in the eye and said, “Mom, Dad, Tom Gunn took advantage of me.” As Tom's heart sank into his boots, along with his shattered dreams of community, Jim and Elsie knew that for Janet, being taken advantage of meant that she hadn't always gotten her way, but had had to learn to compromise. Trust well placed.

There is another story that I think says even more about Janet, one I heard just this week. Janet always valued official processes, and having her voice heard by the authorities, and as we all know, she would get most exasperated with the people she was the closest to. On one of her weekends with Wilma and John, Janet complained so much about her housemate Angus that finally John said, “You know what, Janet? I'm going to put him in the book.” He took out a little book that had the Nova Scotia Power emblem on the cover, and wrote down Angus' name. Well, that was just what the doctor ordered. For some time thereafter, whenever Janet would get especially frustrated with a person or a situation, John would write it in the book, and Janet's troubles would be over. One fateful day, Janet's baby sister Wilma got her name in the book, I'm sure for being too cranky, or for bossing Janet around one too many times. But touchingly, before she went to bed that night, Janet came to John and made him take Wilma's name out of the book.

We can all be grateful that Janet was a woman of family. She was loved well her whole life long. At a time when parents were given no encouragement or guidance whatsoever about disability, Jim and Elsie somehow knew in their bones that Janet was theirs, that she had value, and that she belonged at the heart of their family. Wilma has described to me how she and Janet grew up more like twins than ordinary sisters, sharing a room, sharing toys, sharing friends, sharing walks to the store or to Sunday school (and later, sharing boyfriends, if Janet had had her way). Janet was loved much and well.

Janet was a woman of family, and therefore, a woman of community. Janet knew she was the Founder, and she carried that role with dignity, as a responsibility rather than a title or a privilege.

In L'Arche we talk about three pillars of community life: welcome, celebration, and forgiveness. Even after 27 years, and who knows how many people had come and gone from Janet's life at L'Arche, she still invited people in. She still delightedly told everyone “You know what? I got a new girl!”. (This year, as it grew harder and harder for Janet to learn names, Tommy was surely glad when Freda arrived, so that he was no longer Janet's “new girl”.) Could anyone celebrate like Janet? Who else could take so much delight in a meal, in a song, in a tuppa tea, in a balloon birthday hat? As for forgiveness, although she may not have been good at choosing the words (“I'm sorry. Now don't do it again.”), in her heart she forgave us over and over again. How else could she keep opening that heart? Janet took the love she received from her family and brought it here. Now look what it has grown.

Janet was a woman of generosity, with her love, especially for babies, with her home and her community, always glad to share it with someone new, and with the spotlight, which she loved but which she also loved to share.

She was a woman of faith and faithfulness, a member of the United Church who mainly attended Presbyterian services, and who got a blessing at every Catholic Mass she could get to, and who is finally being celebrated today by a Catholic priest and an Anglican.

Finally, Janet was a woman of strength and of weakness. At L'Arche we often speak of the weak or the poor, two words which I think apply poorly to Janet Moore, at least in her prime. But she did always have her worries – anxiety about whether it was Thursday, whether it would rain, or God forbid, whether there would be thunder. So much of Janet's life was a search for security, an attempt to keep her fears at bay by drawing good people toward her, people she knew would help her to be safe. She brought people together through her reliance on them.

In her latter years, Janet became more and more a person of weakness. As she grew older, Janet gradually lost much of her sight, most of her words, and almost all of her independence. These were often difficult times for Janet, as her anxieties did nothing but grow, and her ability to communicate those anxieties, or to receive comfort, diminished. But they were not without their beauty.

Over this past year I have been touched again and again by the tenderness of this woman, who had always been so tough, tolerating no nonsense, and certainly no mushiness. I first noticed how our early morning banter, as we left her house each Wednesday for our babysitting day, went from joking to serious. I used to call out, as if I were Janet's voice, “Goodbye, Katie! Goodbye Tommy! I miss you! I love you!” and Janet would say, “Oh stop it. You sound 'idiculous.” But this year she hardly ever crossed the threshold without saying it herself, “Goodbye! I love you!”

As Janet needed more and more help to get through her day, much to our surprise, this independent woman accepted our help with grace and gratitude. She held fast to the tiny accomplishments of an ordinary day, where just getting into the van, or making it from the couch to the table, was something to celebrate.

At a certain point in my relationship with Janet she began to need help in ways I never thought I would have to help her. I had to choose between my discomfort with intruding on Janet's dignity, and my desire to preserve our time together. I chose for us to stay together, and one day, as I was helping Janet, and feeling awkward and embarrassed, Janet turned to me, and with eyes brimming, said simply, “I love you. I love you. I love you.”

Janet lived through her death just as well and wisely as she lived her life. Bathed in the love of family and friends, and surrounded by music, Janet quietly, peacefully, held on for all she was worth. I've been joking this week that I never knew someone who came to her own wake before. But that's what she did – she gave all of us a chance to say goodbye.

Cathy Brady had a chance to sing, to pray, and to weep over her. Ed had a chance to make up a new song as he sang it to her. And Mary LeBlanc made her love for Janet complete, and this will be my last story. Mary's own health is not strong, and her communication is limited, as arthritis has all but eliminated her ability to sign. She gets things across mainly by facial expression and by literally digging in her heels when she needs to. When Janet took to her bed at the end, Mary, whose room was across the hall, refused to sleep. For four nights running, Mary didn't sleep, and none of us knew what to do. Finally someone thought of putting a cot beside Janet's bed, and there Mary happily lay down and slept like a baby.

Last night we waked Janet at home. As the evening grew later we tried to help Mary to bed. Three times we wheeled Mary down the hall, and three times Mary dug her heels in and refused to go to her room. Finally Jenn asked her if she wanted to go to Janet's now empty room instead of her own. Mary happily agreed, and then just as happily got in to Janet's bed, where she spent the night.

I don't believe Janet would think much of this eulogy, neither the length nor the sentimentality. Janet was always matter-of-fact about death, and I will close with the few words I have heard Janet say about many a dear friend who has “gone up to heaven” ahead of her. I believe she would say: Whissht! Up she goes! Now don't swear to God, because Janet Moore is up there.

Friday, February 26, 2010

"It's the eyes that I have..."

Tanya and Coralee and I get together in the lounge at The Angel’s Loft, a room of quiet in the midst of a hectic (noisy!) workplace. I choose the armchair, and Tanya and Coralee settle themselves on opposite ends of the fancy leather couch to share with me their thoughts on friendship and each other.

Tanya and Coralee met earlier this year, when Tanya arrived as a participant in our day program. Although neither of them can recall the exact moment when they were first introduced, they both agree that they have become friends over these past few months, meeting at the numerous parties and celebrations that inevitably pop up when you get involved in L’Arche.

Although they still seem a little shy, they are happy to share what they appreciate about each other. "She’s funny and kind," Coralee says when I ask what she likes about Tanya. Tanya looks skeptical.

"Well", she replies seriously, "kind, but not funny."

"What do you like about Coralee?" I ask.

"She looks beautiful!"

"Yeah, I do. It’s the eyes that I have." Coralee knows how to accept a compliment.

"Plus, she’s kind and friendly, and laughable! She jokes around," Tanya continues.

"Yeah, I like to laugh and carry on. I always tease people. I tease either Rebecca or Rodney. Rodney is the biggest teaser I know!" Tanya smiles as Coralee entertains us with tales of the mutual poking fun that happens at Korban House.

As we talk more about what friendship is, Tanya and Coralee agree that a friend is someone to keep you company, someone who is always there so you don’t have to be alone. Friends are there to help you, to laugh with, to go for walks and play games. Friends can go shopping together. "For underwear and socks and bras!" laughs Coralee, "pink lacy ones!"

Tanya is scandalized, "I wouldn’t wear those!"

They also recognize that friendship can sometimes be a struggle. "They are hard to come by," Tanya notes. "Some people might be your friends for a little while but then they turn out to be the opposite. That happened to me. Made me feel confused. I don’t want to say I hate them, but it was upsetting."

"Or sometimes friends die." Coralee speaks from experience.

Tanya nods in agreement. "Yeah, like Michael Jackson, he’s gone. He was a good singer, a good dancer too. Although he screwed himself up pretty bad."

Our time is drawing to a close and I ask the ladies if they have anything else they would like to add. Coralee is anxious to get back to work, but Tanya wants to make sure I have it clear. "I’d be lost without Coralee and all my friends. Ever since I came here there are so many friends, it’s like home."

Monday, January 18, 2010

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"."

Friday, January 15, 2010

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, 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?