Team Bryson: Quiet but mighty in NYC parade

By Laura Williams

Last weekend, my family decided to take the ultimate road trip to New York City. The idea started about five months ago when Louise at BLOOM wrote about the NYC Disability Pride Parade.

This parade was conceptualized by a father and famous jazz musician Mike LeDonne. He wanted to raise awareness and create community pride about disability to honour the pride he feels for his daughter Mary, who has Prader Willi Syndrome.

The disability community in New York City jumped in with both feet and members from the community led the charge—creating awareness about the event, getting permits, planning the route, and connecting with participants. It was an example of inclusivity in action.

Participating in this event was important to us. As a family, we have experienced amazing examples of inclusion, acceptance and kindness. Unfortunately, we have also experienced heartbreaking moments where we’ve not only been blocked access but asked to leave due to our son Bryson's vocalizations—he is non-verbal and makes sounds to express himself.

Walking side by side with others who have lived this kind of experience in New York was very powerful. What struck me was how quiet the march was. Parades are typically rowdy and loud and expressive.

At this parade many of the people around us were non-verbal. It was much quieter, but no less jubilant and meaningful. Voices that aren’t loud can be missed—but not when people come and walk together, making their presence undeniable.

This reminded me of how very important it will be to continue being visible in our community, looking for any opportunity to include our son in “everyday” activities even when it means we will have to face glares, stares and confusion. That is no longer my burden, it is theirs.

I was so very proud that day to be included in this community—one that demonstrates the elegance of quiet and the boldness of the human spirit. We have so much still to do to ensure all people have the opportunity to lead a dignified, fulfilling life—and I want to be part of that transformation!

Laura Williams is director of Client and Family Integrated Care at Holland Bloorview.



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Why are disabled teens more likely to be alone?

By Louise Kinross

Life skills staff at Holland Bloorview presented their early findings from a review of 56 studies on friendship for youth with disabilities at a hospital Crosstalk last week. The event brought together staff, youth and a parent speaker.

Sarah Keenan, life skills coach, noted that research has shown that friendship is associated with life satisfaction and good mental health in the general population, while loneliness has negative impacts on our immune system and heart health.

Yet children with disabilities tend to have fewer friends and smaller social networks than their peers. Sarah referenced an American study of 11,000 teens that found that “over 50 per cent of students with autism had no contact with friends outside school and were never invited to spend time with friends.”

Studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability, she said. However, interactions with youth with disabilities in general are often superficial on the part of typical youth.

There is no one definition of friendship and clinicians and researchers want to know more about how youth with disabilities define a good friend, Sarah said.Research shows that friendships of youth with disabilities have some unique characteristics.

For example, while most teens move away from their family in pursuing a growing social life, youth with disabilities continue to need parent support to keep friendships going. Friendships of people with disabilities, particularly those with autism, tend to be less intimate than their peers. And youth with disabilities have less social contexts in which to develop friends because issues with transportation, accessibility and safety make it harder for them to get together outside school.

Most studies about friendships for youth with disabilities focus on the school environment and few look at connections in the community, Sarah said.Holland Bloorview recently ran a 14-week friendship development program called PEERS.

The program, originally designed for youth with autism, was adapted for teens with physical disability and called Teen Talk. Teens and parents participate in separate 90-minute weekly sessions.

A key lesson learned “is that it’s not enough to focus on teaching skills, we need to give youth opportunities to practise and generalize these skills in school and in the community,” Sarah said. In addition, “parents are important partners in helping their children develop skills and make and maintain friends.”

A parent said the program broke down complex skills for her daughter and gave her the chance to practise them. She noted that friendships for youth today are less face to face and more online.

Parents in the program found school inclusion to be too challenging for many youth, the parent speaker said, and that their children had had greater success making friends in separate programs for kids with similar abilities. “It takes time to get to know our kids and how many typical individuals take the time to get to know the person underneath?” she asked.

The parent said that it’s during the teen and young adult years that youth most need support in creating social networks. “Don’t cut off services at age 18,” she said. “And don’t leave it up to parents,” who already have their hands full addressing a multitude of needs in their child.

“A great way that I made friends was by getting involved in clubs and places in the community and volunteering,” said Farrah Sattaur, a young adult who spoke.

“I think parents should make it a point to connect with their child's teacher because parents know their child best. They should also focus on their child’s abilities, rather than disabilities, and try to figure out their child’s interests. Sometimes it’s hard to figure out a child’s interests. Look for clues, like if your child is always happy around your dog and looking for the dog.

“Teachers should connect with parents, EAs and special-ed teachers to make their programs and activities more accessible. For children and youth who find it a challenge to make friends, just be yourself and believe you can do it.”

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Animator finds beauty in what we try to hide

Rachel Johnson is a Hollywood animator producing stop-motion films that fall decidedly outside the celebrity culture of her town.

Her latest, Henrietta Bulkowski, is about a young woman with a severely curved spine who wants to see the world but can't even lift her head. With a sightline only of the ground, she builds a plane with a hole in the bottom to take her on her voyage.

The Toll Collector (above) is about a ballerina with abnormally long legs. She dreams of being a dancer, but instead hides her physical difference by taking the night shift as a road toll collector.

"As the film wrapped, I realized I had spent two years building and filming the most intimate secret I had," says Rachel, founder of Lift Animation. "My own shame." 

Rachel, who grew up with one leg four inches shorter than the other, had multiple operations as a teenager to break the bones in her short leg and stretch them with fixators over months in hopes of evening out her legs. But after years of complications that resulted in infections, accidental breaking of her bones and the need for reconstructive surgery, her leg was badly scarred and unusually shaped. And it would still be a bit shorter.

Rachel had dreamed of leaving the hospital to become a ballet dancer. Instead, she resigned herself to wearing long pants and pretending she wasn't different. 

But the years of painful procedures came out in her dreams. "I had nightmares about the hospital and everything that had gone wrong and being disfigured."

The only thing that eased the disturbing dreams was making art. "I didn't know what I wanted to do specifically, but it needed to start out undesirable so I could make it beautiful," she says.

She began by making sculptures of overweight women. "My mom was always overweight and thought she was fat and ugly. I thought she was beautiful. My whole senior art show was beautifying overweight women. Other people thought they were really pretty and I realized I had the power to change the way people see things."

She moved on to photography of seniors, and then stop-motion animation, creating tiny puppets from clay that are animated when still pictures of them making incremental movements are run as a sequence. "I've always wanted to sculpt realistic things with a twist," she says.

Rachel is currently pitching a feature film with a non-verbal character.

As she's been so successful in conveying the beauty and humanity of characters with physical differences, I wanted to know if she had considered a character with an intellectual disability.

"I did a short film about a woman with Alzheimer's but I got a lot of flack for it," she says. "It was a total failure. As the protagonist of a feature your character has to go through a character arc, where they start one way and end a totally different way. The woman with Alzheimer's had no control over how she was going to end her life so it was hard to craft an arc. She was incapable of the change and growing and learning most people can relate to."

Rachel says a child with intellectual disability would be an equally hard sell. Viewers "can't see the value of a person unless the person is in some way like them. If the character doesn't have the ability to change on a level that most people can relate to, they can't connect with the character. They don't get it."

I'm interested in how we can change stereotypes about disabilities that are deeply embedded at an unconscious level: these are biases that underpin a culture and which we are all raised on.

This gave me food for thought, listening to Rachel explain how the limits of narrative structure made it challenging to tell the story of a child with intellectual disability in a way that would have meaning for most people.

"There isn't enough exposure," she said. "People don't understand empathy because they don't have to. One of my very best friends grew up very sheltered. Nothing ever happened in her life. She would ask me the most inane questions about my leg. Then she moved to Africa for a year and she lost 40 pounds because she was so heartbroken by the pain and poverty and she changed. She became an empathetic person. But you have to be 'out of the box' to get out. Most people aren't born with empathy."

I hope Rachel takes on the challenge of creating characters from the most marginalized of populations, including mental disability, and showing us a different picture.

A longer interview with Rachel will appear in the December issue of BLOOM magazine.

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Do you have a physical disability? Want a job?

Teens with physical disabilities are about half as likely as typical teens to have part-time jobs. They may face discrimination and employers who aren’t willing to provide work accommodations or training.

Research shows that volunteer and work experiences during high school are predictors for finding well-paid work as an adult. Yet getting those jobs as a teen is harder. Many employers complain that young workers aren’t ready for work and lack the social- and problem-solving skills they need.

Holland Bloorview researchers are doing a study to learn more about the job skills teens with and without disabilities have.

We’re looking for high-school students in Grade 11 or 12 in the Greater Toronto Area to participate in a mock work interview and employment activities as part of this research. Teens with and without physical disabilities are sought.

Participants receive a $10 gift card, credit for volunteer hours and feedback. Please e-mail Sally Lindsay.

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Spread the word

In light of Spread the Word to End the Word day, Ellen Seidman at Love That Max has posted this video about her son Max.

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Should kids be asked to care for a disabled sib?

This is the author's note to Pillow: A sibling story, which was written by Sophia Isako Wong. Sophia has a 40-year-old brother with Down syndrome. She is an associate professor of philosophy at Long Island University in Brooklyn, New York. She writes about political and educational inclusion for people with cognitive disabilities and justice within family relationships.

I wrote this story to illustrate how typical siblings may feel when they provide “respite care” for their parents. Research shows that parents often believe that their children are emotionally mature enough to recognize their own developmental needs and to speak up for themselves. One parent said, “I know if it’s too much for her she’ll tell me.”

Let me tell you a secret: we sibs don’t tell our parents how we truly feel. Our motto is “Never mind me; you have enough to deal with. I’ll figure it out by myself.” If our behaviour seems untroubled and serene, that’s because we are experts at hiding our worries, resentment, envy and nightmares.

In families untouched by disabilities, sisters and brothers fight, argue, sulk and express the whole spectrum of feelings toward each other. In our families, we never get that opportunity. With our sibs, it is never a fair fight. Even if we have a just cause, the disabled child usually gets the lion’s share of our parents’ attention and sympathy.

We’ve learned through experience that we are rewarded with positive attention from parents for being the easy child, and sometimes reproached for making more trouble for you. So we often help you without complaining.

We watch you every day. We see that parents have far too much to do, resources are lacking, and there aren’t enough hours in the day.

When we notice how exhausted you are, we fear that you won’t be able to take care of us adequately, or you might have to quit your jobs, and where would we be then? So we volunteer to give you a break, thinking this will help the whole family survive. “Parentification” is what happens when children perform the role of parent at the expense of their own developmentally appropriate needs and pursuits. When children take on responsibilities performed more appropriately by an adult, they feel torn between looking after the vulnerable sibling and taking care of their own needs.

If a child or teenager (mistakenly) perceives that his needs are less important than the needs of others in the family, he may volunteer to sacrifice time and energy he would otherwise devote to school, friendships and typical childhood activities.

Research shows increased risk of psychological and social problems in some siblings who are burdened by excessive caregiving roles and who, in effect, become ‘little parents.’

Here’s the good news: the whole family benefits when parents take breaks from the exhausting work of caring for a child with disabilities. Parents need to take care of their own health by asking support staff, neighbours, friends and family members to help out. Doing so gives them precious time to rest and recover from the stresses of parenting a child with disabilities.

Even if your typical child is eager to babysit, and is supremely confident she can handle it, please make sure an adult is supervising her at all times. That way, she doesn’t have to function as an adult before she is ready. By helping but not being in charge, typical children can continue to focus on what they need to be healthy and safe.

Trust me, we siblings of kids with disabilities feel intensely guilty whenever we play with other kids, master skills that the disabled sib will never learn, or pass for normal in a crowd. We’re acutely aware that we are very lucky to be non-disabled, and that we might have been born in the disabled sib’s shoes.

Some of us are forever trying to make it up by being on our best behaviour, concealing our negative feelings and accepting more than our fair share of household chores. Many of us see ourselves as Super Sibs: born to babysit. You may even believe that we are more high-functioning and more emotionally mature than other kids our age. Don’t be fooled: we are kids with the same concerns and complex emotions as other young people.

So if your child volunteers to babysit before she has become a competent adult mature enough to have her own children, I hope you’ll think of Pillow and Sister and say: “No, honey, go ahead and play. We’ll hire a babysitter, use respite, or ask other adults to help us when we need a break.”

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The upside of going downhill

 





















The upside of going downhill
By Ijeoma Ross

We happened upon skiing almost by accident. Four years ago we had a bad case of cabin fever. Canadian winters are hard with a child in a wheelchair. Going down south or on a cruise was too expensive. Cruising online we happened across Maine Handicapped Skiing (now Maine Adaptive Sports and Recreation) based at Sunday River Ski Resort.

We couldn’t believe that our son Deane could go skiing at Maine Adaptive for free (the group offers free lessons to children and adults with physical disabilities). Deane, who has cerebral palsy and uses a wheelchair, would be taught to ski by volunteers. And we could ski with him. We booked five afternoons and over March Break drove to Sunday River.

The team at Maine Adaptive was amazing. They have an occupation therapist and equipment “doctor” on site who assessed Deane’s strengths and abilities and adjusted and adapted equipment for him. Their building is slopeside so the skiers can get fitted and go right on to the hill.

It is a busy place with volunteers and skiers of all abilities coming and going. Deane and his “team” made up primarily of his father (Mark) and a good friend (Ali), who is a keen skier, were immediately welcomed. Because of their experience, expertise and friendliness, we will be going back for our fourth year in March.

For the first two years, Deane skied in a slider – the front of a walker on skis with arm rests for him to help support his weight while on his own skis. A volunteer would control his speed and direction from behind using straps attached to the slider.

The volunteers were more than willing to teach Mark and Ali how to control the slider. By the end of the second year, the volunteers were there primarily in a teaching role.

Other family members and friends could ski down the hill with Deane - as long as we stayed out of the way!

This past year we switched to a sit ski because Deane had the beginnings of hip dysplagia. Deane was more than happy with the move. Because the sit ski is more stable it can go faster and Deane loves speed. Now I’m working to keep up with him.

For the past two winters, we have also been skiing with the Canadian Association of Disabled Skiing (CADS) at Brimacomb Ski Hill outside of Oshawa.

There are provincial branches of CADS across the country with different ski hills running programs. In total CADS has 1,130 skiers assisted by 1,900 volunteers to participate in recreational and competitive snow skiing and snowboarding.

At Brimacomb, a team of dedicated volunteers take 30 skiers out on the hills for one of three 1.5 hour lessons each Sunday for eight weeks during January and February. All equipment is provided by CADS.

It is a tight-knit group of instructors, volunteers, family members all there to help the skiers get the most out of their time on the hill.

All of the instructors and volunteers must be trained on all of the equipment from sit skis to harnesses for blind skiers and three-track outriggers for leg amputees. Family members are encouraged to take the training so they understand the process. The cost is $110 for participants and $35 for volunteers to cover the insurance.

It was at Brimacomb that Deane first moved into a sit ski. Mark and Ali were trained to drive (holding on to the back bar on the sit ski) and tether (holding a strap while skiing behind as an anchor). In our first year, I found it difficult to keep up with the speed of sit ski.

This year, I have learned to tether and have loved being a crucial part of Deane’s skiing.

There are not many activities that both Deane and his sister Rayne, who is not disabled, can do together. Skiing is one of them. It has become an integral part of our family’s recreation.

On the iPad Deane uses to communicate, he will readily tell you that he likes the chair lifts, the sit ski and going fast. What we thought was just a rash idea to cure cabin fever has become a way of life for all of us.

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A change of mind

This quote from No Ordinary Boy author Jennifer Johannesen (above with son Owen) sums up what I got last night from her BLOOM talk at Holland Bloorview.

“Your own experience of your child can improve and blossom and grow in a way that is not attached to achieving anything.”

Jennifer spoke about a shift in how she looked at Owen's disabilities: from that of high-achieving new mom who undertook her complex son's care like a 'project,' to one who realized after he died that she had stopped seeing his deafness as a disability. When she was asked to speak recently at an agency that serves children who are deaf, she at first didn't make the connection.

Jennifer -- you inspire me! Louise

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'Normal:' It's not all it's cracked up to be

We ran a condensed version of this interview, but I'm sharing the full version that appears in the winter issue of BLOOM. I think it's a powerful message for families and professionals. Louise

Dr. BJ Miller was a successful Princeton sophomore when he and his buddies decided, on a lark, to climb atop a parked commuter train; the lark turned dark when the train’s electric voltage arced to his metal wristwatch, resulting in the loss of part of his legs and left arm. As a triple amputee he went on to graduate and become a palliative-care doctor. He’s now executive director of the Zen Hospice Project in San Francisco. “I learned so much, particularly about perspective,” he says. “It’s not what you see, but how you see it.”

BLOOM: It sounds like you were someone who had everything—at least on the outside—before your accident. How did becoming an amputee change you?

BJ Miller: I was well aware that I was very fortunate in many ways when I was younger and while that was good, it was also tough. Whenever I worked hard or was proud of something, it was discounted. I couldn’t take any credit for any of my achievements—or my pain. It was a bit of a funny relief when I became an amputee because I finally had an external source of suffering. Finally people stopped treating me like the world had just been handed to me. It gave me access to humanity in a different way and that helped me. It didn’t feel this way every minute, but I worked towards it feeling like a source of good fortune. Of course it was also a source of a great deal of pain and anxiety too. I’ve had the full gamut of emotions but on balance, over the years, more good than bad has come from it.

BLOOM: What was the greatest challenge for you?

BJ Miller: In a nutshell, how to see things differently. By pulling me out of my anything-approaching ‘normal’ frame of reference it really helped me upend that endless cycle we humans engage in of constantly comparing ourselves with those around us. Am I smart enough, rich enough, skinny enough? Compared to what? That’s the question I got to open up. I was given a way to let myself off that hook and be my own frame of reference. That was extremely liberating for me and it gave me a way into self-actualization that was wonderful.

It’s still a great challenge to keep it up—to still be my own boss, to be my own gauge. As much as that’s the greatest gift, it remains the greatest challenge. A critical subtext for disability and for my palliative work comes to this issue of following one’s own gut and reconciling what the external world wants and thinks and needs from you with being true to yourself. There isn’t a pat answer to that.

When I talk to school kids they’ll say “Don’t you miss having two hands?” and I’ll invariably say “Yea, I do, but don’t you miss having three hands?” Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three. “I don’t sit around missing them anymore than you sit around missing three,” I’ll say. This frame-of-reference issue is a powerful thing.

BLOOM: How hard was it to relearn how to do things as an amputee?

BJ Miller: It took five years of hard work before I felt truly in my body again and coordinated in a new way. I think the hardest thing remains the arm. Having two hands is way easier than one, and the hands are so important. Sure, I miss my feet, but they’re just like a platform. They’re easy to duplicate. I can get around on my prosthetic legs.

BLOOM: What did you learn about having a visible difference in our culture?

BJ Miller: I’ve learned a lot because I was suddenly snapped into being part of a minority, of being ‘the other.’ All of a sudden I embodied something that most people fear. I was very aware of this sort of repulsion that people felt. It was hard to see the terror on kids’ faces, or parents pulling their kids away from me. Or if I surprised someone, and I was wearing shorts, and they were horrified.

Sometimes it took the guise of pity, which I knew was the enemy. Sometimes the pity felt nice because old women would come up and give me $20—even when I was in medical school! It definitely was hard and I had to really concentrate on sticking my chin out when I walked out of my bedroom to face the day.

The fascinating part was that about two years after the accident I noticed people’s reactions got a little better. And after five years I noticed a big difference. I must have carried myself differently. At first, I’d drive like a mad man and get pulled over by the cops and they’d take one look at me and let me go. Or if I was flying, I’d be bumped up to first class every time and they’d sneak bottles of wine into my bag. But then that just stopped. Did I reach a new level that I didn’t trip up these responses in others, or had society evolved?

BLOOM: What assumptions do people make about you?

BJ Miller: Back in 1990 I was treated as a Frankenstein figure or a Christ figure and it was ridiculous at either extreme. Sometimes I got congratulated for going to the bathroom. Then somewhere along the way amputees seemed to bust out and a handful went out and did extraordinary things—competing in Iron Man triathlons—and the expectations changed: if I didn’t climb Mount Everest, I had failed.

Whether people expect too much out of me or too little I still have to learn the skill of protecting myself against false expectations. I worry that my life has been summarized in the media as one of extraordinary achievement. I won’t argue that some really good stuff has come from it and I’m glad for the things I’d done, but I haven’t done those things out of ambition or the need to be Superman. I’ve done them just to be true to myself and the possibilities in front of me.

BLOOM: How did you cope in the early days?

BJ Miller: I was full of pain and fear. But I can’t tell you how important it was having grown up with a disabled mother. For much of my mother’s life she used an electric wheelchair and being in the world with her, I vicariously learned a ton of the things we’re talking about. As a child I was sensitive and a little worried: ‘Gosh, I’m lucky in all these ways and could I even handle it if I had a disability?’ So I was coming from a different place when I became an amputee than most people. I loved my mother so much and was aware of the way the world treated her—and yet I didn’t want to collapse into hating life. These issues had been rumbling around in my head for a while. I didn’t wake up on day one and see my situation as a great challenge. But pretty soon I was aware that it was that—a great challenge. I knew that and I had to live it.

BLOOM: Did friends stick with you?

BJ Miller: There was only one friend who just couldn’t handle it. He couldn’t really even look at me because it was too painful for him. He wasn’t mean, he just sort of disappeared. But for the most part people stuck by me and that’s because I had really great friends and a lot of my friends were close with my parents and had learned from my mother’s experiences.

BLOOM: Doctors typically rate quality of life in people with disabilities very low. How would you rate your happiness with life now compared to before your accident?

BJ Miller: I would rate my quality of life as better. For all the reasons we’ve discussed—for all of the internal resilience it’s fostered in me. And also at some point I would have to say that people with disabilities have to learn to get into it and embrace it. I love my prosthetic leg. I love playing with it and it’s that playfulness that is so critical—you not only accommodate your disability but you really celebrate it and get into it. At that point you’re not operating from a sense of deficit anymore. However you get to that point is key.

BLOOM: Do you have a personal philosophy that helps you see things with perspective?

BJ Miller: I’ve only read the Serenity Prayer a couple of times but I’d have to say that it registers with me. Teasing out what you can control from what you can’t control—I can’t think of a better skill to acquire as a human being than that. Because whether or not you qualify as disabled, life is full of pain and difficulty. Even if you have all the perfect circumstances, at some point Mother Nature will insist upon certain things from you, like your own death. You can’t change the things you’re looking at in so many ways, but if you’re going to use your energy, put it into how you see.

BLOOM: Why did you become a palliative-care specialist?

BJ Miller: Because all of the things I’ve learned to get through my day seem to have broader relevance for people dealing with various themes of suffering. Suffering is a unifying human bond and it comes in many stripes and colours. And even if you have a perfect life you still have to say goodbye to it at some point. I love finding and working from the common denominator—and suffering and mortality are the most thorough.

After med school I thought I would go into rehab medicine but when I did a rotation in that I was turned off. It seemed to be a very mechanical field, while a lot of what we’re talking about has to do with the transformational powers of coping with disability—that there’s this raw material for transformation and growth and interest.

The goal in rehab seemed to be to get back to where you were before the injury and that to me was fundamentally flawed. Generally it’s not possible, but more importantly, why undermine and cut yourself off from all the beautiful stuff that comes your way when you embrace differences? I’m sure there’s a balance to be struck with therapy, but overall, celebrating differences—especially the ones you can’t change—is a better way through, if you ask me.

BLOOM: Some people might imagine that working with people who are dying is negative. Is it?

BJ Miller: You have to watch yourself. Sometimes it’s hard to strike a balance. But for the most part I see much more beauty in it. And it’s not beauty because of the absence of pain. It’s beauty because of how we respond to pain. If I could push a button, and all the pain would go away, I’d push that button. But since it doesn’t exist, I want to see how people foster a way of thinking that’s creative in response to the things we can’t control. To me that’s much more beautiful than horrifying.

BLOOM: What advice would you give parents of children who won’t meet conventional markers of success?

BJ Miller: I don’t presume to know exactly what that feels like. I wouldn’t try to convince parents not to worry, or not to wish that their child had an easier go of things, but I would say over time spend your energy on finding things to celebrate in your child’s differences. Turn your attention toward the differences, instead of away from them, and who knows what will come— either lessons, or some weird new talent. Divorce yourself from the typical measures of success in life. It’s a harder road, but a way more fulfilling one.

I have a window into the inverse of this in my work. I see people all the time who do have a ridiculous wealth of conventional success and there’s a lot of misery in there because they’ve never embraced their own internal metric, they’ve never done their own homework. Part of getting there involves letting go of the idea that ‘if I just had this or that’ or ‘if I just looked like this or that’ things would be perfect. In fact, it’s my experience that it’s the opposite.

BLOOM: What have you learned in palliative care that might have relevance to people living with disability?

BJ Miller: Suffering is normal—though you may keep it at bay—and time is precious. And to squander time trying to be someone you’re not isn’t generally the best use of time. I spoke at a rehab hospital and I challenged them to take the field beyond the bullshit around ‘normalcy’ and to embrace the emotional, conceptual, philosophical and transformative issues that are smack in front of their faces.

The mechanical side of rehab needs to be complemented with developing the individual’s mind to embrace life rather than feel the need to change it into something it’s not. When I look back on my rehab process I’m glad I did it and it was useful for me. But I didn’t pretend that what they were offering was a comprehensive, therapeutic response. I took it for what it was— mechanical—and I had to get the philosophical and emotional pieces elsewhere.

Photo by Brant Ward/The San Francisco Chronicle

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Social world shrinks as disabled kids grow

Soon after our son Ben was born, a geneticist gave us the news that our baby had a greater than 50 per cent chance of having a rare genetic disorder. After listening to a vague description of potential bone and development problems, and clinging to the stat that 25 per cent of these kids were intellectually 'normal,' my husband asked, through silent tears: "But will he still be able to run and jump and play with his friends?"

At the time, we didn't question that Ben would have friends.

We didn't know that being friendless was the norm for kids with physical and intellectual disabilities.

I really DON'T want to write this post.

I don't want to believe that my son will never be able to develop friends naturally because he can't speak, looks different, can’t keep up physically or intellectually with his peers and does things that aren't 'cool' for his age.

But in the last few weeks, the evidence outside our own personal experience has been mounting, and continues to slap me in the face.

It started with a British study -- aptly named Does Every Child Matter? Researchers followed children with disabilities and their families through interviews and observation for 32 months. One of the key findings was that parents face huge pressure to 'make their child normal' and when they aren't successful, the child and family are excluded -- from friendships, at school and in the community. The biggest barrier to participating in sports or community activities was not access or transportation, but attitudes. Children participated in segregated community programs, researchers found, because they had no other choice. At school, they were segregated because of the requirement to be 'able' and to develop typically, and because special-ed policies have placed the 'problem' of disability within the child, instead of within the disabling environment, the scientists said.

Then there was the Holland Bloorview research that showed teachers and students alike shut out kids with cerebral palsy in regular classes. "The kids act like I am invisible," one participant said. And it's not just the children. A teacher turns off a student's communication device, rendering the student silent. Another teacher refuses to allow a child to have a bathroom communication button -- so the child, toilet-trained, must wear diapers. The reason? The button would disturb other students.

And the final nail in the coffin? In Dr. Anne Snowdon's recent study of 166 families in three Canadian cities, more than half of children with physical and developmental disabilities have no friends or only one friend. Only 1 per cent spend an hour a day with a friend.

Can you imagine the outcry if any other population of Canadian children was found to be this isolated and alone?

Reporting on Snowdon's study, André Picard writes in The Globe and Mail: "In childhood, efforts are made, but by the time kids hit age 10 or so, when cliques and social circles form outside of parental control, ostracization and isolation is near complete."

According to a U.S. National Institutes of Health funded study in Ontario, the teen years are particularly difficult. While peers become involved in a growing array of activities that widens their social network, teens with disabilities tend to stick with the same activities, often with family members.

Ben wants friends. I used to love watching him stand as a small child at the window, signing, "Friends, where?" as we waited for the birthday party guests to arrive. When he was younger, he had some authentic friends. In particular, students rose to the occasion at an alternative elementary school he attended that had a philosophy of promoting diversity. There was Adaku, a girl who was fascinated with sign language, came for play dates and regularly spent time with Ben. She read his poem about a gorilla at a school function.

There was Eli (back photo above). One day another student questioned Eli about his friendship with Ben, and Eli responded by saying: "Ben? He's one of my best friends" and put his arm around Ben's shoulders.

But things got trickier as the kids moved into puberty: they were now twice the size of Ben, who has a form of dwarfism, we still hadn't found a reliable way for Ben to communicate, and he couldn't keep up intellectually or socially. He had one good year at the Metro School for the Deaf -- a segregated program within a regular elementary school. The kids were fond of him, he occasionally had students over, and he liked the kids who rode his bus.

Friendships didn't materialize at his segregated high school 40 minutes away: all the students were bussed in and lived in different parts of the city. If you invited kids to a party, parents never RSVP'd and often the kids didn't show. Ben's school reports indicated that he had no contact with the other students -- which was hard for me to believe, because he is sociable.

I have a meeting at Ben's mainstream school in a week and I want to know whether he's made any progress socially there. He doesn't get phone calls or texts with constant requests to go out like the rest of my children. His weekends are free. He still doesn't have a way to clearly communicate with people, which seems to be the basis of all friendship. He does have guts. He was the only student in the deaf and hard of hearing program who went to the school's Halloween dance (with his worker Marjorie). Apparently some girls asked him to dance. When we did his life plan, I wrote out about a dozen possible dreams for the future, and he immediately scanned through them and pointed to "have friends."

I read the comments posted on media stories about research showing exclusion of children with disabilities. Many have disturbing, although predictable, themes: You can't 'force' a child to be friends with a disabled child; Parents should have aborted their kids so they didn't have to experience this misery; Why would a child invest time in a disabled child when he or she could get so much more from a typical child?; Any relationship between a disabled and typical child involves charity on the part of the 'regular' one.

If the parents and brothers and sisters of our children have meaningful relationships with them -- why can't anyone else?

No Ordinary Boy author Jennifer Johannesen and I were discussing this the other day. She pointed out that although workers had authentic relationships with her son Owen, she had to pay them to spend the time with Owen -- time that was necessary to get to know the boy inside.

And perhaps that is the bottom line. It takes more time than any teenager is willing to spend to get to know our kids, who are often locked in bodies that limit self-expression.

I didn't want to write this article. But when I came in today, I read this blog entry by Ben's worker Marjorie: 'It's fine, I don't care.' It's about a Super Bowl party one of her adult clients organized. Most of the friends he invited from college didn't come. "It's fine, I don't care," he said.

Marjorie writes: "I once took a small conference with David Hingsburger, and he said something I will never forget: 'You will always be more important in the life of someone with a disability than they are in yours.'"

I'm assuming Hingsburger was referring to how few friends disabled youth have compared to their peers -- which would mean that any friendship is more valued by them.

But it really bothered me, reading that quote. It suggests that the person with disabilities always has less to bring to the relationship. Which is wrong.

The whole topic of youth with disabilities and social isolation makes my blood boil.

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Raising a child who wasn't supposed to survive

I met Esmirna Lopez-Cugurs (above) and daughter Amanda at the Montreal Children's Hospital. Here Esmirna talks about Amanda, 4, who has Trisomy 18 and wasn't expected to survive. I think Amanda found the topic rather boring and was encouraging us to include her! The Lopez-Cugurs family attended an ethics workshop about how cultural devaluing of children with disabilities can play out in their care. Amanda's dad Eric spoke about his family's experiences on a parent panel. Thank you Esmirna and Amanda!

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Mr. Kumon

We've had two lovely nights of Kumon where Ben has really enjoyed it and is showing that he's memorized adding 2 to most numbers up to 15 -- and even goes back to correct mistakes.

Remember, prior to the summer, Ben had never been able to write and he never seemed to 'get' math. Part of the problem was that he couldn't 'play' with numbers the way other kids do by counting out loud or writing them down. And we never had solid signs for the numbers either, because he had trouble manipulating his fingers to make them. So he never had a good mental awareness of numbers.

When we first moved  in Kumon from adding 1 to adding 2, sometimes he would default back and simply start adding 1 to every number (like he just wanted to get this work over with and he'd start racing through and not paying attention). He had to be reminded to add one, and then go to the next number for two. We sometimes used a number chart and he would count along two spaces with his finger while I counted out loud: "One, two." I don't think he's ever laid down counting in his mind (so that he could say it in his mind while he was moving his finger).

I figured it was going to be a big deal to learn sums for the other numbers. But when one of his books included + 3 problems he surprised me by getting the correct answers for some -- without looking at the number chart. I just about lifted him off the floor with a high five!

I realize this won't proceed the way it does with typical kids, whose brains are wired to leap from adding to subtracting to multiplying and so on. And sometimes I wonder if having him learn simple math isn't a good use of time in terms of giving him something he can use functionally in life. But when I see the sense of accomplishment he gets chugging along through his Kumon books -- and being one of the kids who sits at our dining room table working -- it makes me happy.

Another neat thing I've noticed is that Ben has begun writing a stylized 'a.' Instead of writing an 'a' as a circle with a stick on the right side, he writes it as you see it in this font: 'a.' He still has trouble writing and writes larger than usual and it's hard to read his writing. So it's not like his writing is perfect by any means. But I find it intriguing that this kid who couldn't write a few months ago has begun writing a fancy 'a.'

Ben was thrilled yesterday because his Halloween Town High movie arrived in the mail. The other night he found it on Amazon and put it in the cart and asked me if we could get it. Since then he's been asking every day when it's coming. Ben had an early closing day at school and was at home with D'Arcy when the movie arrived. Apparently all afternoon he was signing "Thank you Mom for getting the movie."

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A gift for BLOOM

David and Lynn Coriat (parents to Jessica above) have donated $100,000 to BLOOM. I interviewed David to learn about why his family made this generous donation! David is executive vice-president and chief financial officer at Slaight Communications, an investment and entertainment company in Toronto. Slaight is a partner in SiriusXM Canada. Covering the costs of BLOOM – which is mailed free of charge to families and professionals – is always a challenge. The Coriat’s significant donation will make both 2012 issues possible and allow us to expand into new formats – including a BLOOM speaker and video series. Thank you David and Lynn! Louise

BLOOM: What is your connection to Holland Bloorview?

David Coriat: My connection is my daughter Jessica, who has seen Dr. Wedge there on numerous occasions after surgeries. Jess has an affinity for Holland Bloorview and her eyes light up whenever she’s there. She’s told us a lot about what Holland Bloorview does for the kids.

BLOOM: Why did you decide to make this donation to BLOOM?

David Coriat: BLOOM offers parents a forum to learn more about other kids with disabilities and to learn about the environment as a whole – at a time when a lot of their friends and associates tend to move away from them because disability is still a stigma in our society. Parents of children with disabilities face challenges on a daily basis. What BLOOM does is offer a forum for learning and sharing and the comfort that “I’m not alone. There are a lot of people in the same situation.”

BLOOM: What have you learned as a father raising a daughter with a disability?

David Coriat: Our society still has a negative view of people with disability and our environment is not set up to nurture children with disabilities. Unless they’re fighters, these kids get buried in the system and shunned. When my daughter went through the school system, she was ridiculed. She has a strong personality and a tough skin, and was able to take it. But now I see her at 21 desperately looking for a job. She passes all the phone interviews because she has the gift of the gab, but the minute an employer sees her walker, the doors close.

BLOOM: What changes would you like to see to improve the lives of children with disabilities?

David Coriat: It has to start at the political level where disability is put at the forefront. And there has to be education at the school level, because kids are mean – and their parents are even meaner – when they see a kid with a disability. I think it’s going to take a couple of generations before kids with disabilities are accepted as part of the mainstream.

BLOOM: Is there anything else you would like our readers to know?

David Coriat: The key in my mind, for parents, is that even in your darkest day there is always a light at the end of the tunnel. There’s always a friendly shoulder or ear out there if you look for it – particularly among other parents who understand the challenges. And that is why I wouldn’t hesitate to support BLOOM. It provides a forum for hope and gives parents perspective.

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'It's not what you see. But how you see it'

This is a condensed version of an interview that appears in the January issue of BLOOM magazine. I don't think I've spoken to anyone who's made me stop and think the way Dr. BJ Miller does. Louise

Dr. BJ Miller was a successful Princeton sophomore when he and his buddies decided, on a lark, to climb atop a parked commuter train; the lark turned dark when the train's electric voltage arced to his metal wristwatch, resulting in the loss of his legs below the knees and part of his left arm. As a triple amputee he went on to graduate and become a palliative-care doctor. He’s now executive director of the Zen Hospice Project in San Francisco. "I learned so much, particularly about perspective,” he says. “It's not what you see but how you see it."

BLOOM: It sounds like you were someone who had everything – at least on the outside – before your accident. How did becoming an amputee change you?

Dr. BJ Miller: I was well aware that I was very fortunate in many ways when I was younger and while that was good, it was also tough. Whenever I worked hard or was proud of something, it was discounted. I couldn’t take any credit for any of my achievements – or my pain. It was a bit of a funny relief when I became an amputee because I finally had an external source of suffering. Finally people stopped treating me like the world had just been handed to me. It gave me access to humanity in a different way and that helped me. It didn’t feel this way every minute, but I worked towards it feeling like a source of good fortune. Of course it was also a source of a great deal of pain and anxiety too. I’ve had the full gamut of emotions but on balance, over the years, more good than bad has come from it.

BLOOM: What was the greatest challenge for you?

Dr. BJ Miller: In a nutshell, how to see things differently. By pulling me out of my anything-approaching ‘normal’ frame of reference it really helped me upend that endless cycle we humans engage in of constantly comparing ourselves with those around us. Am I smart enough, rich enough, skinny enough? Compared to what? That’s the question I got to open up. I was given a way to let myself off that hook and be my own frame of reference. That was extremely liberating for me and it gave me a way into self-actualization that was wonderful.

It’s still a great challenge to keep it up – to still be my own boss, to be my own gauge. As much as that’s the greatest gift, it remains the greatest challenge. A critical subtext for disability and for my palliative work comes to this issue of following one’s own gut and reconciling what the external world wants and thinks and needs from you with being true to yourself. There isn’t a pat answer to that.

When I talk to school kids they’ll say “Don’t you miss having two hands?” and I’ll invariably say “Yea, I do, but don’t you miss having three hands?” Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three. “I don’t sit around missing them anymore than you sit around missing three,” I’ll say. This frame-of-reference issue is a powerful thing.

BLOOM: How hard was it to relearn how to do things as an amputee?

Dr. BJ Miller: It took five years of hard work before I felt truly in my body again and coordinated in a new way. I think the hardest thing remains the arm. Having two hands is way easier than one, and the hands are so important. Sure, I miss my feet, but they’re just like a platform. They’re easy to duplicate. I can get around on my prosthetic legs.

BLOOM: What did you learn about having a visible difference in our culture?

Dr. BJ Miller: I’ve learned a lot because I was suddenly snapped into being part of a minority, of being ‘the other.’ All of a sudden I embodied something that most people fear. I was very aware of this sort of repulsion that people felt. It was hard to see the terror on kids’ faces, or parents pulling their kids away from me. Or if I surprised someone, and I was wearing shorts, and they were horrified. Sometimes it took the guise of pity, which I knew from my mom was the enemy. Sometimes the pity felt nice because old women would come up and give me $20 – even when I was in medical school! It definitely was hard and I had to really concentrate on sticking my chin out when I walked out of my bedroom to face the day.

The fascinating part was that about two years after the accident I noticed people’s reactions got a little better. And after five years I noticed a big difference. I must have carried myself differently. At first, I’d drive like a mad man and get pulled over by the cops and they’d take one look at me and let me go. Or if I was flying, I’d be bumped up to first class every time and they’d sneak bottles of wine into my bag. But then that just stopped. Did I reach a new level that I didn’t trip up these responses in others or had society evolved?

BLOOM: How did you cope in the early days?

Dr. BJ Miller: I was full of pain and fear. But I can’t tell you how important it was having grown up with a disabled mother. For much of my mother’s life she used an electric wheelchair and being in the world with her, I vicariously learned a ton of the things we’re talking about. As a child I was sensitive and a little worried – ‘Gosh, I’m lucky in all these ways and could I even handle it if I had a disability?’

So I was coming from a different place when I became an amputee than most people. I loved my mother so much and was aware of the way the world treated her – and yet I didn’t want to collapse into hating life. These issues had been rumbling around in my head for a while. I didn’t wake up on day one and see my situation as a great challenge. But pretty soon I was aware that it was that – a great challenge. I knew that and I had to live it.

BLOOM: Do you have a personal philosophy that helps you see things with perspective?

Dr. BJ Miller: I’ve only read The Serenity Prayer a couple of times but I’d have to say that it registers with me. Teasing out what you can control from what you can’t control – I can’t think of a better skill to acquire as a human being than that. Because whether or not you qualify as disabled, life is full of pain and difficulty. Even if you have all the perfect circumstances, at some point Mother Nature will insist upon certain things from you, like your own death. You can’t change the things you’re looking at in so many ways, but if you’re going to use your energy, put it into how you see.

BLOOM: Why did you become a palliative-care specialist?

BJ Miller: Because all of the things I’ve learned to get through my day seem to have broader relevance for people dealing with various themes of suffering. Suffering is a unifying human bond and it comes in many stripes and colours. And even if you have a perfect life you still have to say goodbye to it at some point. I love finding and working from the common denominator – and suffering and mortality are the most thorough.

After med school I thought I would go into rehab medicine but when I did a rotation in that I was turned off. It seemed to be a very mechanical field, while a lot of what we’re talking about has to do with the transformational powers of coping with disability – that there’s this raw material for transformation and growth and interest.

The goal in rehab seemed to be to get back to where you were before the injury and that to me was fundamentally flawed. Generally it’s not possible, but more importantly, why undermine and cut yourself off from all the beautiful stuff that comes your way when you embrace differences? I’m sure there’s a balance to be struck with therapy, but overall, celebrating differences – especially the ones you can’t change – is a better way through, if you ask me.

Photo above by Brant Ward ran with a feature about BJ in the San Francisco Chronicle.

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Focus on deficits masks a child's beauty

A highlight of the ethics conference at Montreal Children's Hospital was a parent panel. Nathalie Bouchard, above, was one of those parents. Here she talks about how a medical focus on deficits harms the relationship between parent and child. Nathalie was interviewed in a playroom at the hospital. I'm happy to report that shortly after this interview a tiny dog was brought in for 'pet therapy' and there were no more tears! Thank you Nathalie!

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Advocacy in an unfamiliar culture

Getting your child with disabilities services can be a challenge. But imagine going to bat for your child in a language you don't understand? And what if you didn't feel comfortable talking openly about your child's disability? These are just some of the barriers facing parents in the Canadian Somali community says Shukri Farah (above) in another BLOOM clip.

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Swimming lessons

In the 1970s there were no special swimming lessons for kids with disabilities in Edmonton. My brother loved the water, so my parents registered him for swimming lessons. The staff looked at him and said that the teacher wouldn't have him in the class unless a family member was there to help Leo. My parents looked at me. I knew they wanted me to say I would sign up for the same class, and be Leo's helper. I told them what they wanted to hear. This story is about why I never learned to swim.

Swimming lessons
By Sophia Isako Wong

I am afraid of the water. Clutching the side of the pool, I edge my way along, hoping the teacher won't notice me. All the other kids are in the middle of the pool; I am the only one who can't keep up.

"Come on, Sophia! Let go of the wall and kick your legs!"

I transfer one hand to the flutterboard, a thin slice of blue Styrofoam that doesn't support my weight sufficiently.

"You can do it! Both hands on the flutterboard, and kick your legs straight out!"

I take a deep breath and start kicking my legs. Maybe if I can get my legs going first, I'll be able to let go of the wall.

SPLASH!

Without looking, I know what has happened. My brother Leo has done it again: a big cannonball into the pool, gleefully creating a big noise and splashing all our classmates. The teacher calls my name. I wave my arm to show I've heard her.

"I'm coming." I pull myself out of the pool, drop the flutterboard, and make my way to my brother. Eyes shining, he watches me approach him with a huge smile on his face.

"Hey Sophie, did you see me? I made a big splash! That was fun!"

"I know, Leo. I saw you, and I heard you. Did the teacher ask you to do that?"

"No, it was my idea! I made a big splash!"

"Leo. Look at me. This is not play time. This is swimming-lesson time. Can you listen to the teacher, please? The other kids don't like it when you splash them."

He is crestfallen. "Oh."

I give him a big hug. "We'll play in the water after class, I promise. Can you do just swimming for now? Just until the end of class?"

"Oh.... ohhhhkay."

I point toward the teacher and look from his face to hers, until his eyes focus on her. I return to the edge of the pool. Now the kids are doing a different exercise and I've missed the instructions. Shivering, I grab my flutterboard, get back into the cold water, and watch them. I’m still afraid of the water.

Sophia Isako Wong is an associate professor of philosophy at Long Island University in Brooklyn, New York. Her brother Leo has Down syndrome. Here's what she said about the photo above: I don't have any photos of us in the pool, but here's one of us in the bath -- another activity in which I routinely supervised my brother while my parents were out of the room. I think our expressions show the way we feel about water.

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'Burden' of complex kids not whole picture, ethicist says

I was privileged to interview Franco Carnevale at the ethics conference on children with disabilities at the Montreal Children's Hospital last week. Franco is a clinical ethicist who worked for a couple of decades as head nurse in the pediatric ICU at Montreal Children's. He's also a psychologist!

Here he talks about "an implicit understanding that (children with disabilities) don't count in the same way as other children" -- a bias found within the health system itself. To illustrate his point, he shares a research project to study families of children who live at home with ventilators. Franco admits that going into the study, he assumed they would be documenting primarily hardship and stress. But what he found was "a lot of the most stressful moments in life are intertwined with the things that matter the most." He titled the resulting paper: Daily Living With Distress AND Enrichment.

Do not miss this clip! Go directly to YouTube for a full-screen version. Louise

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Does every child matter?

The results of 'Does Every Child Matter, Post-Blair?' were released today. The research project at Manchester Metropolitan University asked what life in England is like for disabled children age four to 16. Researchers spoke to disabled children, their parents/carers and professionals to ask about their lives from 2008-2011.

Here are a few findings I know will resonate with readers. Check out the report in detail (link above) to learn about the researchers' recommendations. Louise

• disabled children sometimes sit outside 'mainstream' children's policy and 'mainstream' services including education, health, leisure and social care
• families with disabled children are often isolated with little support in their communities
• despite changes in legislation, disabled children are still excluded from a range of leisure activities. The biggest barrier to disabled children's access to leisure was the attitudes of other people. Physical and attitudinal barriers mean that many disabled children had no choice but to attend segregated leisure activities.
• disabled children living with life-limiting conditions and their families are likely to experience isolation and poverty. Parents and carers are often excluded from support networks. The discrimination families face in life continues in death.
• parents come under huge pressure to make their disabled children 'normal.' When families differ from the 'norm' this leads to exclusion -- children are excluded from friends, schools and leisure opportunities and parents are excluded from friendships and work
• disabled children have often been excluded from arts for its own sake (their creativity is often thought about in terms of therapy)
• parents are often asked to talk negatively about their disabled children in order to access services and support, whether in education, health, leisure or social care/benefits. Parents are asked repeatedly to talk about what their children can't do, as opposed to the support they require. Parents say this has a negative impact on their relationship with their child.
• disabled children often have to deal with negative perceptions of their bodies, including being stared at or questioned about their bodies. Disabled children's bodies often cause emotional reactions in others because they serve as a reminder that none of our bodies are normal
• when disabled children are viewed as 'vulnerable,' bullying is often accepted as inevitable. Often the bullying goes unnoticed by the adults who are sometimes also the perpetrators.

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Talking about limb difference

In the first of a series of BLOOM clips, Janelle Cherng talks about explaining daughter Gabi's limb difference in social situations.

In BLOOM clips parents and experts talk about childhood disability. Send us your ideas for future topics! Thanks, Louise

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