As a child, 'my strength faded away'

By Terrence Bishundayal

At the age of six I began losing my childhood.

In 2002, my family came from Guyana to Canada. I started first grade at North Kipling Junior Middle School. Immediately after, I noticed that I had trouble climbing the stairs. I would lose my balance and fall. My teacher suggested I walk on the opposite side of the stairs, while the class walked on the right, so I could take my time.

My legs hurt when walking long distances and I would ask to be lifted. I didn’t realize it at that age, but my muscles were getting stiff. Sometimes when I was walking I would trip.

In gym class, I couldn’t keep up with the other kids doing sports. My gym teacher told my parents she thought my shoes were too big. At the time, none of us thought it was anything serious.

By the end of Grade 1, I was using the elevator.

My dad took me to the doctor and he ran tests and referred me to SickKids. I had surgery which determined that I had Duchenne muscular dystrophy (DMD). This is the continuous weakening of all of the body’s muscles over time.

To be honest, as a kid, I didn’t really understand it.

By the spring of 2003, I was using a manual wheelchair. This confused the other students. “What’s with the chair?” they’d ask. “I’ve seen you up before.” They weren’t mean, but more curious.

The same thing happened when I was given easier things to do in gym class. If we were playing basketball, a hoop was put on the floor and if I got the ball in the hoop, that counted as a goal for my team. The students wanted to know why that just applied to me.

“I have a leg problem,” was my response. That was all I knew about DMD at the time.

In Grade 3, I was prescribed Deflazacort, which is a steroid medication taken by patients with DMD. My parents told me “If you take these pills, your muscles will be better.” I thought that meant I’d be like the other boys. But while they were getting stronger and able to do more physical activities, my strength faded away.

I was living with my cousins at the time, and one day we noticed that they were all growing taller and I wasn’t. It was the first time I noticed I was shorter than other kids. I didn’t know Deflazacort would affect my growth, and I wanted to be tall like the others. I was clearly upset about this and I became more emotional and sensitive.

The school had a large playground outside but I couldn’t play during recess. My wheelchair was hard to push over grass and a couple of times I flipped over. Many times I’d just sit by the door so when the bell rang I could get back to class quickly. In the winter, my wheelchair could get stuck in the snow or slide on ice.

In Grade 4, the teacher picked other students to help me at recess. She would assign one boy and one girl. I wanted to hang out with the guys, but often the boy assigned to me would say ‘I’m going over here to play basketball,’ or would just throw me off to the girl.

Then my homework started to pile up. My hands got sore when writing, and I couldn’t work at the same speed. I’d often do homework from 4:30 to 9:30 at night, and sometimes I still had to get up early the next morning to finish it. I didn’t know how to tell my teacher what was happening. I was the kind of student who didn’t want to show up at school with incomplete work.

Eventually I got frustrated and cried, and my mom called the teacher. After that my homework was reduced. For example, instead of 30 math questions, I’d do 15, or instead of a full page of journal writing, I’d do half a page.

Students started to tease me. I was gaining weight because I wasn’t getting as much exercise in my wheelchair. Nobody had told me anything about wheelchair sports. They called me fat and an emotional wreck.

Kids can be mean, and they didn’t understand what was happening to me. I did report it to the teacher when I thought a student was going too far, but it involved many students.

In Grade 5, the teachers began planning a three-day trip to Ottawa. I was excited to go, and it never occurred to me that I wouldn’t be able to. But I had to stay home because they didn’t have knowledge about how to do my personal care, and my mom was working. I was very upset about that.

If I was talking to a younger student with DMD now, I’d say to always report teasing to your teacher, no matter how small, because it can get worse if you don’t.

When you feel down or sad, it’s best to talk it over with an older adult who you trust. It might not be your parents, because they may be working, or you may be scared to tell them. When I tried to talk to other classmates about what I was going through, they didn’t understand. Their greatest worry was what they were going to do at recess, or getting a snack.

I was a patient at Holland Bloorview, and sometimes I was invited to attend events with other kids with DMD. But I didn’t want to take part in any of that. I didn’t want to talk about the pain I was feeling, and I didn’t want to look at someone older and to think “this is what will happen to me.” It’s kind of ironic, but I was scared of people with disabilities, because everyone was able-bodied at my school. I was the only one who was different.

My elementary years weren’t all bad, but many times I didn’t feel good. It was hard to have a disability when the other 800 children didn’t. Whenever I felt angry or sad, I would try to get back to a calmer mood. I never had any counselling. No one ever told me if you feel angry, there are things you can do, like listening to music.

Growing up I thought of myself as a storyteller, whether telling real stories or fictional ones. I was very big on movies, and I wanted to learn how to review them. I’ve just finished my second year in journalism at Humber College, and I’m learning how to tell stories in many different ways.

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Stares at the mall

Many of you know Sue Robins as the author behind The invisible mom, one of our most read posts about social isolation among families of children with disabilities. Sue recently took a poetry class and wrote this piece, which she says is fiction, based on her experiences raising her son with Down syndrome, and stories other families like hers have shared with her. Louise

Stares at the mall

By Sue Robins

Always the caboose

He’s minding the gap

At the back of the line.

Invisible but visible

Is a puzzling way to be

Stared at, all but ignored.

How old is he

The nurse asks his mom

He’s standing right there

A teenager, not a ghost.

I hate my face

He announces one hot July day

Sits on the bench, arms crossed, opting out of the moments.

I was asked

Many times by other moms

Do people stare at you in the mall?

Why yes, yes they do.

First they stare at my boy.

Then they stare at me.

They finish up by staring at my boy again. 

I see their heads turn

To and fro

As if we are a tennis match.

Marked by pity, not love.

This is how you stop making eye contact

Begin walking with your head down

And don’t leave the house.

We are not contagious we cry

But nobody hears us.

Instead they shush us to be quiet

And demand that he inspires them.

Our circle becomes smaller and smaller

Until we collapse into the tiny dot of our four walls

Passing the time by gently and together

Placing a fence of sticks

Against our respective hearts.

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This mom broke the social isolation of autism

By Louise Kinross

Charlie Castro is a happy, social 7-year-old who loves elevators, math and reading. But his autism makes it impossible to filter out the everyday noises of modern life.

“He’ll be having a great time, and then he gets a blast of an overhead announcement or a cell phone rings, and he has a meltdown,” says Charlie’s mom Karen. “We have to remove him and he misses out on the fun—again and again and again.”

Four years ago, “I couldn’t stand the isolation Charlie was experiencing,” Karen says.

So she started Play Dates, a Scarborough, Ont. support group for parents of children with autism and other physical and developmental disabilities.

She invited parents from the Holland Bloorview nursery school Charlie attended. In the early days, the group would arrange a trip to the zoo or island or a play date at someone’s home.

“We had this moment where there were six of us sitting in one of the mom’s homes and we realized, for the very first time, that we were relaxed,” Karen recalls. “Our children hadn’t changed, but for the first time I’d let my spine settle into a chair, and I wasn’t jumping up to apologize or correct Charlie or pull him off something.”

This feeling of comfort was a surprise, because parents didn’t experience it when they took their kids to parks or regular children’s programs. In mainstream settings, “they’re worried about whether their child will be judged, or they’ll be judged,” Karen explains. “It’s painful and traumatic when you don’t feel there’s anywhere you can go with your child where you’re welcome and your child is safe.”

Karen, a self-described dreamer, has parlayed her Play Dates ideas into a weekly, protected drop-in for the group at a double gym at the East Scarborough Boys and Girls Club (jumpy castle, balls and ride-on toys included); a series of five summer soccer lessons where each child had a one-on-one volunteer; professional guest speakers for parents; and birthday and holiday parties at family homes. They even have hair-cutting parties so that when one child wants to take a break, another can jump in the chair.

Saturday drop-ins draw 14 to 20 parents and up to 40 children, and over 200 people follow Play Dates on Facebook. One family drives in from Milton. Brothers and sisters are always welcome. Most parents are moms, but some dads participate. Most events are free.

The East Scarborough Boys and Girls Club hired a part-time disability studies student to help manage the Saturday group. “I don’t ask anything from people,” Karen says. “You don’t have to bring lasagna, and you don’t have to do any preparation. It’s come when you can.”

Many of the participants are immigrant families whose kids have hit a service wall, Karen says. “When English is a second language, things happen so much more slowly for them. It’s shocking. I could tell you stories that would curl your hair. I’ve learned a tremendous amount about heroism from some of the obstacles these families face.”

Karen says Play Dates helps parents see they’re not alone, and educates them on services that are available to their kids.

“This is an opportunity for people to talk, to share information, and for the kids to just be together and to be who they are. I hope other parents will consider doing this.”

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QuickFlix: Can support workers be friends, too?

Holland Bloorview family leader Donna Cappelli discusses whether paid support workers can be considered friends of her son Julian, 15, who has high needs that make friendships with peers challenging.

QuickFlix is a series of short BLOOM clips about parenting, disability and health. Don't forget to check out our A Family Like Mine videos.

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'I feel like a castaway:' 10-year-old boy with autism

The National Autism Association posted this poem written by a 10-year-old boy  on its Facebook page. "He was asked to write a poem for school titled 'I Am,' his mother wrote. "He was given the first two words of each sentence. This is what he wrote."

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How I became a sister to my brother with autism

By Melissa Ngo

I was taught that I was the expert. The “go-to” person. As the sister of someone with autism, I was the translator, the teacher, the therapist, the person who explained, the mighty protector and defender. As a child, I assumed these roles without question. For my brother Scott, I wore all of these hats at once.

I was a “good” sister for doing therapy exercises with him. When he couldn't find the words, I spoke for him. I was even the sister who swore and swung at the other kids for calling him names.

One time another student came right up to my face and said “Your brother is a stupid retard.” And the sound of that last word barrelling out of his mouth made me cringe, and I felt the long sear of his disgusting words. I swung and yelled at him and he ran away.

Later that day I went home and wrote down questions about a colourful book that my brother had borrowed from the local library. After all, he needed to work on his comprehension. We read the book together, and it was a nice feeling to read a book with Scott.

Then I told my mom about how that student made me feel terrible. The other child was wrong, she said, and didn't know any better. Scott was lucky to have a big older sister like me, my mom said. But please don't swing at the other kids next time! Right before bed, I thought, “I hope that if the same thing happens tomorrow, it happens to me, rather than Scott.”

All hats were on that day.

While I don't regret those swings, I realized in my teen years that I had to shed some of these roles. While it was great to feel like the expert on my brother—to be the person who wanted to know my brother the best out of everyone in the world—I realized that perhaps not wearing every single hat, one of top of each other, was the best thing for him or me.

Growing up Scott attended programs to improve his deficits in “social skills and communication (imagine being defined by what people say you don't have).” These services were a long drive to Toronto from where we lived in Markham. The people running them didn't seem to genuinely connect with Scott, and there was a strict relationship between the therapist and Scott. They gave him worksheets that were for a young child and he couldn't relate to them. We paid some serious money for these services.

Oddly, what ended up being most beneficial for Scott was right at home! My friends came over and he'd hang out with us, people who were his own age and non-judgmental. And it didn't cost anything!

Scott was happy and he would sit with us and focus on the interaction. My friends would say “Hi Scott. How are you?” and they would wait for his reply. With us, Scott was social, engaged and communicating. Was it magic? Or was the American Psychiatric Association's diagnostic manual, known as the DSM, unable to define every person with autism? With my friends, Scott didn’t need a defender. He didn’t need a therapist. He didn’t need a translator. He didn’t need someone explaining what “autism really is” (and really isn’t).

This was when my friends and I decided to start a high school club called Hand Over Hand. We put posters up around school telling people about different disabilities. We started a social group (free, run by youth volunteers, and very recreational). During university, we continued to work with local organizations and businesses in the community that helped us with the social group.

We started a Pen Pal Program between our members with disabilities and our volunteers to help everyone feel more comfortable when we got together (this also helped with hand writing and computer skills). It's 10 years later, and we've incorporated as a nonprofit organization. We continue to run three programs regularly, and we throw the only accessible music festival for people with disabilities in York Region. Hand Over Hand was founded on friendship and collaboration. Not only do our members work on personal goals, but they build strong connections with the people around them, and feel safe and empowered in their community.

Hand Over Hand sprouted because I realized I didn’t have to be a pathologist, transcriber, or a knight to my brother. I didn't have to wear each and every hat. I just had to be his sister.

And this is not to say that I never wear any of the hats anymore—sometimes I still have to wear a hat or two and that’s okay (in fact, I like to think of the hat I wore at 14 years old when I told the school board that they need to pay attention and step up their game).

I also wear new hats. Today I find myself explaining “neurological differences” rather than autism or translating words like “retard,” so people know why it's offensive.

Over the years, I've seen that while ignorance in the community still exists, there are people who care, people who want to learn and eradicate discrimination. From a young age, I knew I didn’t need anyone’s pity about my brother’s autism diagnosis, because it's a part of him that he shouldn’t have to feel ashamed about. I used to say that Scott is, first and foremost, my brother. But perhaps I could have simply said: I am his sister.

You may also know Melissa Ngo as a family support specialist in Holland Bloorview's Family Resource Centre. Tomorrow (July 18) Hand Over Hand is hosting an amazing, accessible music festival in Thornhill. For more information, e-mail info@handoverhand.ca  

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A social media blitz isn't friendship

By Louise Kinross

Yesterday my hubby sent me an e-mail with a link to this story about a 13-year-old Peterborough, Ont. boy with Asperger's. He invited 15 students to his birthday party and not one RSVP'd.

"I read this and started crying," he wrote, thinking about our son. We had a similar situation a few years ago when our son invited two "friends" from school to a celebration that involved going to see The Hunger Games and they didn't show. I remember sitting at our dining room table cutting cake with my other kids when my son asked "where" his friends were and "why" they weren't there. "Something must have come up," I said. We went as a family to the movie.

People who don't have kids with significant disabilities don't have a clue what this is like. It's completely outside their realm of experience. I don't think I would have believed the degree of isolation that can happen, especially in high school and early adulthood, to youth with more significant disabilities, or those that make social relationships challenging.

In 2012, Dr. Anne Snowdon's study of 166 families in three Canadian cities found that 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. Is that possible? Growing up I spent hours with friends everyday after school.

Last year Sarah Keenan, life skills coach at Holland Bloorview, spoke about how research shows friendship is associated with life satisfaction and good mental health in the general population. On the other hand, loneliness negatively impacts the immune system and heart health.

Children with disabilities tend to have fewer friends and smaller social networks than their peers, Sarah said, after reviewing 56 studies. She 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.

On the weekend people were touched by the outpouring of social media support for the Peterborough student. After his mother posted about his friends giving him the cold shoulder, tweets poured in from sports teams, actors, singers and politicians, all sending him birthday greetings. And strangers and media came to his party at a bowling alley that night.

That's great, and I'm sure it was a huge boost to this boy and his family. But how will this translate into changes in the boy's daily life? What about the 15 students he wanted to come to his party, who didn't even respond? How will their ideas or behaviour change? This was a feel-good one-off—one tweet sent, one event attended. Inclusion for youth with disabilities is so much more complicated than that.

This morning I heard from a parent in Vancouver who sent me a link to a video about her son, with autism, and Club G—an elementary school's efforts to ensure he was included. Make sure you watch it. I was crying tears of joy by the end. This is the thinking behind Club G.

But then I thought about it and my pessimism returned. This is elementary school. Our own experience has been that authentic friendship is possible during those early years, when kids are receptive and a school makes disability awareness and inclusion a priority.

It's in the high school years that things break down—when the focus becomes much more academic, schools are less invested in character development, education for students with disabilities often becomes segregated, and teens themselves cringe to be seen as different.

According to a U.S. National Institutes Health Funded Study led by Holland Bloorview researcher Gillian King, the teen years are particularly difficult for youth with disabilities. 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.

This is a deep, difficult cultural problem, not one that can be solved on social media.

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'I do feel sad sometimes, but Kate isn't'



Last week I shared a new comment written on our most popular post The Invisible Mom by Sue Robins. The Invisible Mom is about how mothers of kids with disabilities can face the same social exclusion their kids face. Julie Drurie, mom to Kate, 7, who has a rare mitochondrial disease and took the selfie above, wrote a thoughtful response on her blog Searching For Solid Footing. We've reprinted it below. She made me think about how my perception of my child's exclusion may differ from my child's perception. Interested to hear your thoughts. Louise

'I do feel sad sometimes, but Kate isn't'
By Julie Drury

The first time I read The Invisible Mom I didn’t think that was me. I understood it and felt strong empathy for Aaron’s mom, but I didn’t think I felt the same pain and angst of exclusion as she.

But then I started considering how Kate is ‘included’ and ‘excluded,’ deliberately or not. I reflected on the moments where her differences stand out so starkly and where I hustle to make excuses for her…

…“she can’t hear you.”

“yes, she’s 7…but she’s more like a 3-4-5 year old.”

“she is signing or saying this that or the other thing.”

“well, she could come to the party…but maybe I should come too…to help…and she’ll probably have to leave early.”

She’s the kid who leaves early from school, is often sick, wears the funny helmet, has a tube in her nose, doesn’t speak, sometimes hits the other kids, is often in her wheelchair stroller because of fatigue, runs away and won’t come back, doesn’t understand when you ask what her favourite colour is (but she can tell you her name and how old she is!!). Some (few) make an effort to include Kate, but playdates, birthday-party invites and get-togethers with the girls are not really part of her life, sadly.

She loses her peer group annually as others grow and mature and learn and she is left behind. Her reality is that adults are her friends—and the few children whose parents facilitate them staying engaged with Kate.

Do I feel left out? Sometimes, yes.

Am I sad? Yes, I grieve ‘loss.’

More importantly, does Kate feel left out? No. Is she sad? Nope. She has her friends at school that will change year to year, but that she values nonetheless. She has her friends at Rogers House (Myah, Moon Pie, Buffa, Mat-teww), and her adult friends (Christine, Kat, Erin, Kara, Adrienne, Vanessa, Steffi, Tall Steve, and more) that she loves. She is developing her own friendships and through those connections, I am finding my peer group of moms and friends as well. A different peer group than what you would expect, but a very valuable one.

I don’t think I am an invisible mom. I think people see me. If they don’t, I usually make them see me and Kate.

I wish for so many things for her. I wish for playdates and friends and movies and outings and independence.

I do feel sad sometimes. But Kate isn’t. Not yet. For now she is happy. Like Aaron’s mom I hope she never has to understand or become aware of the pain of invisibility.

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Left out

I want to share a comment written last week on our most popular post.

The Invisible Mom, written by Sue Robins, has had almost 22,000 views and generated 80 comments.

It's about how mothers of kids with disabilities can face the same social exclusion their kids face: "In the foyer of every elementary school there's a gaggle of moms standing in a tight circle, waiting to pick up their kids," Sue writes. "In the 10 years I've parented my son Aaron, I’ve never cracked that circle. I've walked past that circle hundreds of times and nobody has ever shifted—ever so slightly—to give me room to join in."

And not only do these 'typical' parents ostracize parents like Sue, she writes, but they seem to sanction 'leaving the kid with disability out' when it comes to their child's birthdays and other get-togethers.

Sue wrote her piece over a year ago, yet listen to how it hit this parent.

Do parents of kids without disabilities have any inkling that this is reality for many of our kids? If they did, would they care? Louise 

Thanks for writing this. It has been in my heart for years. Yes, I know too well the gaggle of moms and dads. Like a gauntlet to run every day.

Every year I have hosted a birthday party for my child, every year something fantastic: a bouncy castle, paid entertainment, tons of loot. Every year the kids came, sometimes even ones not invited. But the reciprocal invitations never arrived. This year, he turned 12, and only one child showed up, despite the party being held somewhere all kids love. And this one kid probably came because I pay him to do yard work. I guess at 12 they are all too cool to go to the "retarded" kid's party. My sweet loving boy spent his birthday in tears. How do you explain it to a child? I don't know.

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People with intellectual disability grow old alone: Study

By Louise Kinross

On Monday I got home just as D’Arcy and Ben were walking up the 26 steps to our house.

Ben, who had just got off his bus, was wearing his black and brown Tim Horton’s uniform—including a button-down shirt and visor—and D’Arcy was waiting for him as he climbed each stair. They got to the landing and Ben sped up with his characteristically lopsided gait, the result of a surgery that left one leg shorter than the other.

I was flooded with happiness.

I knew how lucky we were that Ben had two co-op placements in his last year of high school, and the human and transportation supports to make them happen.

But the moment was bittersweet. I quickly reminded myself that these supports will evaporate next year. When Ben leaves high school, he'll experience what families of children with significant disabilities refer to as "falling off the cliff."

And the findings of a large, longitudinal Irish study released last week paint a grim picture for people with intellectual disability decades later, in their middle to old age.

The research—the first in the world—compares the physical and mental health of 753 people with intellectual disability over the age of 40 with the general population over a three year period.

I was particularly interested in the findings on relationships in the study, which is called the Intellectual Disability Supplement to The Irish Longitudinal Study on Aging (you can download it here).

In contrast with the typical aging population, researchers found older people with intellectual disability are generally alone—single, without children, and living in a different area than other family, which makes seeing family difficult.

Three-quarters say paid staff are their most important “social partners”—read “friends.” Just over half have friends outside their home. For respondents with severe intellectual disability, more than two-thirds have no contact with family. Researchers found lack of friends and reliance on staff was just as problematic for older people living in community group homes as it was for those in larger, more traditional institutions. Respondents said they were most likely to confide in paid staff, well ahead of siblings and friends.

“Our findings show that movement to the community does not necessarily equate with community integration,” says principal investigator Mary McCarron of Trinity College Dublin, echoing a theme in this earlier BLOOM post. “Unless the community is truly organized and resourced to support aging people with intellectual disability…their experience may instead be one of social isolation, loneliness and new forms of institutionalization,” Professor McCarron said.

Almost two-thirds of older people with intellectual disability in the Irish study have trouble getting into the community, or don’t go out at all—with “need someone’s assistance” as the main reason they're stuck inside.

Researchers note that “living in the community” for older people with intellectual disability bears little resemblance to life in the same neighbourhood for the general aging population.

While older people with intellectual disabilities had significantly lower rates of high blood pressure and heart attack than the regular population, a majority were overweight, engaged in little physical activity and had osteoporosis.

Compared to a 33 per cent employment rate for the general aging population, only 6.5 per cent of older people with intellectual disability were employed at the three-year mark of the study. About 80 per cent attended a day program.

At the beginning of the study, 32 per cent reported never having attended school. At the three-year mark, over 80 per cent said they had trouble reading, writing, doing simple math and using money. More than 60 per cent could not read their own name.

The researchers note that for the first time in history, people with intellectual disability are growing old in considerable numbers.

I'm grateful that such a large, rigorous study is shining a light on this marginalized population.

But its results cast a shadow on my hopes for Ben's future.

Watching Ben climb the stairs with his dad on Monday I was happy that he had a co-op placement at Tim Horton’s, that he was wearing the standard button-down shirt despite his sensory aversion, and that son and dad were so pleased to see each other.

Ben prefers it when his dad waits at the end of the bus ride. Sometimes when I pick him up he’ll pretend to snap his fingers in a gesture of “darn.”

“I know,” I’ll say. “I’m your second favourite.”

I recognize we’re incredibly lucky that we have one more year for Ben in the school system, and that he is doing co-op five days a week: two days at Tim Horton’s and three days at Variety Village, the adapted gym. He has an assistant who goes with him. This allows D’Arcy and I to work regular hours.  

But at 21 our children lose the learning stimulation, routine and social connections of school, with nothing to replace them. Hiring workers to support your adult child can be extremely expensive. And you may be starting at ground zero to organize activities that are meaningful for your child.

We have a small group of workers, family and friends who met last weekend as a follow-up to a life-plan day we did with Ben, where we looked at his goals for the future and how we can support him. I hope we can come up with a mix of activities for him when he graduates that may include part-time work and a day program. People like my son deserve a better future.

I'm not convinced that the Irish study will result in richer lives for the seniors studied. I don't think the average person is concerned with, or willing to invest in, the happiness of people with disabilities. How can we change that?

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In the community, but alone

By Liz Lewis

What does it mean to be part of a community? To recognize oneself and be recognized as a member of a social group, neighbourhood, or everyday world? As an anthropologist, these questions are standard fare. As the only sister of a woman with disabilities and deafblindness, they are deeply personal.

On paper, my adult sister has a great setup. Katie receives government funding to live in a home five minutes from my parents, with a lovely roommate and conscientious caregivers. Yet my sister lives in near total isolation, with no friends, activities or hobbies. And I know that as an adult with complex disabilities, she is not alone.

Katie has a genetic condition called CHARGE syndrome and needs 24-hour care. She’s never communicated verbally, although she knows some signs and her expressions of happiness and dissatisfaction are easy to read.

Katie can’t drive, cook, or really care for herself, although she can feed, bathe and dress herself with a little assistance. As the mother of a toddler, I'd say that she and my son operate on similar levels. Although I'd prefer to write something lighter and more optimistic, the truth is that Katie can’t do most of what able-bodied adults, or even children, can.

These complex disabilities mean that independence, communication and social connections look different for Katie. She finds agency in deciding what she’ll have for her snack, for instance, or whether she’ll relax with television or ask to go for a ride in the car. She asserts herself by refusing to participate in an activity or by showing joy and excitement over trying something new. She expresses love and caring by sitting quietly next to someone, giving hugs, or simply smiling. She likes to pat my son on the head, but has been known to pinch him when she’s fed up.

It can take time and patience for people to learn how Katie expresses her needs, preferences and desires. Yet again and again I have witnessed her win over caregivers, professionals and acquaintances with her unique charms. This makes it even sadder to me that when I visit my hometown, where I no longer live, my sister is largely alone.

Among adults with intellectual and developmental disabilities in the U.S., Katie is considered one of the lucky ones, meaning that she neither lives in an institutional setting nor in her childhood home. Her access to a high-quality home and staff ensure that my parents don’t bear the brunt of Katie’s lifelong caregiving needs, which will become more complicated as we all grow older. Still, as both an anthropologist and a sibling, I am disturbed by what I see.

When I visit my sister, I can't help notice her neighbours’ lowered gazes as they quickly shuffle from their driveways to their own homes; we've never exchanged a word other than “hello.” I can only imagine what the children and teenagers on the block think of her house. Katie does not go for walks—indeed, I don’t believe her street even has sidewalks—so her only time outside is when she walks the 10 feet to a waiting car to take her somewhere, typically to a park or the drive-thru of a fast food restaurant. Katie might be in the community, spatially speaking, but she is not there in any meaningful way.

Even more disturbing is my sister’s lack of activities and hobbies, which would provide a sense of accomplishment and give her new social connections. For several years, she loved attending weekly equine therapy classes, but then the program lost funding and eliminated its offerings for adults with disabilities. My family investigated volunteer options, such as sorting food containers or recycling for nonprofits or donation sites, but came up short. One well-known local organization even told us that they couldn't let Katie volunteer for them because she might harm herself, offering paternalism as a thinly veiled substitute for blatant discrimination.

The longer Katie lives like this, the farther she seems to withdraw into herself. She loses skills she once had and, at least to me, seems less able to connect with others. She develops essentially anti-social behaviours, such as eating with her hands instead of a fork, which would likely be interpreted as a product of her disabilities even though they are completely new. Although I now live in another state and can no longer participate actively in my sister’s daily life, I am consistently saddened by what I see when I visit. And this is in a state that rates average or above in disability inclusion. To be sure, the situation is far worse in many parts of the U.S. and elsewhere.

The inadequacies of the current independent living and social inclusion movement are more than disability rights issues. They also connect closely to individual safety and public health. We are all safer when we have networks of people—family, friends, coworkers, neighbors and acquaintances —looking out for us. Katie has very few of these. Similarly, there is increasing scientific evidence that social isolation is bad for our health. How might it look if we as a society began to approach social engagement for people with disabilities not as a luxury, but instead as a pressing public health issue?

While great strides have been made in recent decades regarding the integration of people with disabilities, there's much more work to do. The need to rethink what we mean by inclusion is urgent. In the U.S., only 13 states plus Washington, D.C. have closed all of their institutions and, thanks to changes in federal law such structures will soon be a thing of the past. According to United Cerebral Palsy’s most recent annual study, The Case for Inclusion, since 1960 over half of our existing institutions have closed, and 16 more are slated to shut their doors by 2016.

Why not seize this transitional moment to prioritize a new approach to community services and opportunities that make social inclusion a reality, such as increasing access to recreational and employment programs for adults with disabilities? The challenges are large-scale and will require a powerful effort to effect change in existing structures, practices and assumptions. It must no longer be acceptable to equate integration with community living services. Families, self-advocates and allies must demand a more holistic, respectful form of inclusion that acknowledges the social rights and needs of people with disabilities. I, for one, think the time has come.

For more on community living and inclusion, refer to the University of Minnesota’s Research and Training Center on Community Inclusion and to United Cerebral Palsy’s The Case for Inclusion 2014. The Center for Human Policy, Law, and Disability Studies at Syracuse University also has an extensive list of relevant resources.

Please follow Liz on her fascinating blog Disability Fieldnotes or on Twitter @LizLewisAnthro. Her last piece for BLOOM was Disability was home: From big sister to anthropologist.

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Jean Vanier on accepting who we are

Last summer I visited L’Arche (The Ark) in Trosly-Breuil, France—the birthplace of a community that brings together adults with intellectual disabilities and young adult volunteers known as assistants. The model, conceived by humanist, philosopher and theologian Jean Vanier, now operates in 40 countries. In a phone interview on Monday I asked Jean what he’s learned living with people with intellectual disabilities. I was struck by the beauty of how Jean speaks and listens.

BLOOM: Is intellectual disability the most stigmatized of disabilities?

Jean Vanier: I think it can be considered one of the most stigmatized because it touches something very profound. Many people define human beings because of their capacities and success and so on. Aristotle would define someone as a ‘reasonable’ person, a person who can think, a person who is capable of doing things. He would talk about the intellectual component. And of course people with intellectual disabilities are wounded in their intellectual component, but they have another component which is very much alive, which is their capacity to love.

Somewhere in their deepest personhood they are rejected. This is the story of people with intellectual disability over the whole of history. They were considered as a punishment from God. We see this even in the Gospel of John, when the disciples of Jesus see a man born blind, one asks: ‘Is it because of the sins of the parents or his sins?’ For someone to be born without seemingly a capacity to be fully human is seen as something horrible, and therefore these people are hidden away. People don’t realize that the secret of being human is the capacity to understand, but more than that, it is the capacity to love.

To be human is to bring the head and the heart together. Individuals with severe intellectual disability have the extraordinary capacity to enter into relationships, to trust, and to love, and that is maybe the great secret of the human being. It is love that will unify the human family. We need to learn to love each other, not just to have a good head where we’re proving that we’re better than others.

BLOOM: How has your thinking about life changed as a result of living with people with intellectual disabilities?

Jean Vanier: I think what I’ve discovered living with them is about the primacy of relationships. The important thing is to be in communion with people and from communion rises up joy and fiesta. We human beings are made to have fun, we’re made to be happy, we’re made to be people of joy and joy flows from communion and unity. Anguish and violence comes from all the forms of disunity.

So human beings are called to become one and to be together. People with disabilities call forth what is most beautiful in me and others, which is the capacity for tenderness, but they also call forth difficulties, to see my own difficulties in relating and call me to work on them.

BLOOM: I often feel that my son’s disabilities are shining a light on all of my weaknesses.

Jean Vanier: That I really understand—showing a light on our weaknesses, showing a light on what it means to be human. The danger in our society is to pretend that we’re strong and powerful. We can do things, but we are all human beings. We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak. Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: ‘I need your help.’ That brings us together, because I’m not able to do everything myself. I’m calling out: ‘Can you help me?’ Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted.

BLOOM: We live in a fix-it culture where no one is ever good enough as they are. I think for parents of children with intellectual disability, there’s a real conflict between accepting your child and trying to change your child so that your child will fit into the world better.

Jean Vanier: That is a tension even for us here in L’Arche. The great fear of parents is that they don’t want their child to be looked down upon and rejected, so they want them to be as capable as possible and accepted. All of us have to go through this tension between showing we are capable and accepting ourselves with our weaknesses.

BLOOM: My son is 19 now, and sometimes I’m tired of the pressure to always be working on things with him. I feel that I miss out on enjoying the moment.

Jean Vanier: What I hear also, and I find it beautiful, is taking the time to enjoy the moment, to be together, to have fun together, so that he discovers that you love him—not because he can change and be better, but just as he is. To rejoice, to be together, each one of us as we are, that is fundamentally important.

BLOOM: It’s often assumed that people with intellectual disability can’t have a good quality of life, particularly in the medical world.

Jean Vanier: I think richness of life comes from richness of relationship. If we view richness of life from the point of view of success—power, a beautiful marriage, two cars and a house, having two children—the reality of human beings is not that. You can have all the riches of the world and still be terribly upset because no one really loves you and accepts you in your fragility.

When I think of the richness of life I think of someone like Antonio, who was here with us. He had an incredibly beautiful face and eyes and smile. He couldn’t walk, he was as fragile as you could imagine, but he had a capacity to trust us and to enter into that relationship to be with him. He changed people’s hearts.

He brought us to the place of rejoicing that we are human beings together. So if the richness of life is viewed only from society’s view of success and power, then people with intellectual disabilities do not have that. But in reality, if we accept them as they are and if they accept us as we are, we can enter into this beautiful relationship which is a relationship of celebration.

There is a beautiful story of a young man in the Special Olympics who wanted to win the 100-metre race. He got into the finals and he wanted to be first. The guy running in the next lane tripped and fell and he stopped, picked him up, and they ran hand in hand, and finished last. He was accepting not to have the prize, but to live community and solidarity.

BLOOM: The neurodiversity movement has been looking at advantages of different types of brain wiring. Do you think there are positives that come from the way people with intellectual disability think and see the world?

Jean Vanier: I think we have to be careful. People with disabilities are so different from one another. What is absolutely certain is that their fundamental need is to be loved, and to enter into relationships.

The danger of many human beings is that we’re caught up in the idea of success, of power, of doing more and more and having more. We do have to help people with disabilities to progress—to be better in the world of communication, to be able to do things to become more autonomous. But what is the most important is this incredible capacity for friendship and love, and the way they can throw themselves into our arms and be as they are, simple and loving.

People like your son can be caught up in this fear of not being accepted by society, and at the same time being very sensitive to love. I’m sometimes touched by the suffering of people with disabilities who are caught up in the same dilemma or tension as many mothers: wanting to be better, wanting to do things and be acclaimed, but at the same time accepting to live in the moment of tenderness and love and celebration and dancing.

BLOOM: Do you think our culture will ever change to the point that people with disabilities are accepted?

Jean Vanier: I think there will always be a tension. I think something has to be done in schools. I think if one can teach right at the beginning of school, not just the need for success and to go up the ladder, but the need for being together. I was at a school in Calcutta where they were in a circle and the ones who were better were helping the ones who were doing less well. It’s to help children to discover the power of love. That togetherness is something incredibly beautiful.

The fear is that our schools are being run on the power system and children are not learning to be together in a place of happiness and love. This is the problem of deep individualism.

But of course parents are struggling with this. Parents of assistants at L’Arche are struggling with this. I was speaking at a school of one of our assistants and one of the parents said ‘What are your problems at L’Arche?’

I said one of the problems is that you’re very happy if your child comes to stay at L’Arche as an assistant for six months. But if your child wants to stay longer, you’re upset. Because you say ‘staying with people like that is degrading.’

There’s a whole change needed and let’s begin at the school level, to help children so that they no longer despise a child in the classroom who’s weaker, but they can see that it’s a benefit to everybody and it brings forth the beautiful qualities in children.

BLOOM: I was amazed when I visited L’Arche in Trosly-Breuil last summer to speak with an assistant who’d been living there for 36 years.

Jean Vanier: People discover a new way of being. They discover how their qualities of love have grown, and how they’ve grown, and how fundamentally they’re deeply happy here. We have fun together. It is good to be together and there are many people here, in this particular community, who have been here a very long time.

Amazingly, there are a number of young couples aged 28 to 40 who are asking to come to L’Arche as assistants because they have experienced all of the conflict and difficulties for a family in the ordinary life of society. These are young couples who are leaving society, where there’s all this tension to go up the ladder, all this stress, to live here in community and to raise their families here.

BLOOM: What advice would you give parents of children with disabilities?

Jean Vanier: My idea would not be to give too much advice but to be with them and to listen to them and to hear first their pain, and to gradually help them discover that their child has values that they have not yet seen in him.

I would encourage them to come to a L’Arche home and to see the fun and happiness that people have. But as I say, I’m wary of giving advice. I like to be with people and I really understand parents who in some ways feel crushed and hurt, because they were hoping so much for a child that would grow up and have children, and the parents would be grandparents. So, first of all, I would understand the pain of people. There is pain. But then to walk with them and help them and to discover that their child is really very beautiful. It can take some time for parents to come to that place of rejoicing.

BLOOM: Do you find that parents’ perceptions of their children change after they come to live at L’Arche?

Jean Vanier: When a child comes here there’s a joy and a pain. Pain because their child is no longer living with them, but a joy because they know that when they, the parents, die, their children will be well.

There’s always a tension with parents, and the more disabled the child is, the more the parents have grown to love him, to hold on to him, to nurse him, to care for him or her and then the idea of losing control over the child or losing that relationship is sometimes very painful.

But parents are there not to hold on to children, but to help them be well and to grow according to their own gifts.

BLOOM: As a parent I’m fearful when I hear of stories of abuse that takes place, not at L’Arche, but at other homes for adults with disabilities.

Jean Vanier: L’Arche began when I took two men out of an institution which I considered violent and not good and not really attentive to the needs of people. There is, let’s face it, the whole history of humanity has been a long history of abuse and violence towards people with disabilities.

People don’t want to have people with disabilities around because it reminds them of their own disabilities and capacity to die. There will always be a struggle and parents have to realize that and we have to work together, not just for people with disabilities, but for people with old age, with Alzheimer’s, with other illnesses.

And there’s a whole reality between those who are rich and those who are poor. I was in Chile some time ago and going from the airport to the city and my driver pointed and said: ‘On the left are all of the slum areas of Santiago. And on the right, all of the rich places, defended by police and military. And nobody crosses the road.’

This is a bigger challenge than just people with disabilities. We have to discover that to be a human society we have to be intensely present to those who are weak and in need. A society can only be human when the strong and weak come together to celebrate life.

BLOOM: It’s funny that we’re all mortal and yet so often we go through life pretending we’re invulnerable.

Jean Vanier: We praise the strong, we praise those who are winners, and we tend to despise the weak, or we feel despised if we are weak. The greatest pain for human beings is humiliation, to be despised and put down.

The greatest fear of people who are strong is that one day they will be humiliated and won’t succeed as they wanted to succeed. We need to understand that our treasure is not in our power, but in the deep acceptance of who we are, and who we are is different but we are all people. If we try to be who we are not, that tension will someday explode.

Everybody is frightened of the word death. We’re taking that away and instead accepting that we are born to live and born to die, we are born to grow strong and born to grow weak. We are a harmony of strengths and weaknesses but it’s because of our weakness that we need help and we need relationships. The magic words are always: ‘I need your help. I need to be with people.’

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A different take on the R-word

By Laura Rosen Cohen

I have a child with a genetic disorder who is mentally retarded.

That means that he has cognitive delays and is unlike regular children. He has a difference in his genetic make-up that affects his physical and intellectual abilities.

In the past, individuals with mental disabilities have been called mongoloids, morons, cretins and imbeciles. More recently, the term “mentally retarded” has been used. Now it is fashionable to say that people like my son have developmental disabilities or that they have global developmental delays. I’ve probably used these terms myself on various medical forms, school applications and whatnot.

I don’t, however, have a problem with the term “mentally retarded.”

I do cringe when “retard” is used as an insult, just as I would if I heard someone use “Jew” pejoratively, or as an adjective (“Jewing” someone down in price), or the unspeakable (which seems acceptable when some rap stars say it) “N” word to describe black people.

What I object to is the idea that someone’s reality, the way they were created (in my view, by G-d and in G-d’s image) is contemptible and an insult. I’m not talking about their opinions or politics – just the state in which they entered this earth: disabled, or blind, black, brown, Asian or whatever.

I object to all forms of censorship.

I believe it’s wrong to ban thoughts and words.

In a civilized society, undesirable speech and behaviour are self-policed.

Attempting to ban the word retarded won’t help children like my son.

It just means that people have to tip-toe even further around reality, and become ever more frightened of offending parents and relatives of those with disabilities. Aren’t there enough sensitivity minefields out there already?

That’s why I think the campaign against the R-word is misguided and troubling and bound to fail.

Why?

Because it skirts the truth.

The truth is that we parents of children with intellectual and physical disabilities are terrified that our children cause revulsion. We are afraid that people will abuse and disdain them, and that they will lead meaningless lives.

We are terrified that because our children are mentally slow or trapped in their bodies they won’t get the education they deserve to live up to their potential – whatever that may be.

We are afraid that other than us, who is going to care for them when we can’t? What if they languish, like vegetables? What if their siblings can’t handle it? What will happen to them when we die?

Will someone hurt my child? Trap them? Abuse them? My other kids can talk. My son can’t.

We die a little inside every time strangers stare at our children, or make fun of them.
We do wish that our beautiful and often helpless children were not burdened by their intellectual and physical handicaps. We sometimes, even often, wish we could make it all go away, but we can’t.

We have to live in a world that has progressed but still reviles disability for the most part.

We know that many people are disgusted by our kids and have no patience for them.

But we love them, live for them and would die for them.

Many parents, instead of talking about these dark fears, direct their efforts into campaigns against words, when what they are really worried about is that their kids are being treated as human garbage.

But nobody can be forced into loving our children, or treating them with dignity and compassion.

That kind of grace and charity can only be innate; it can only come from within. Isn't external enforcement of tolerance for any group an oxymoron, by definition?

Banning any particular descriptive will not change social attitudes. Tinkering with language will not affect a fundamental discomfort. An example is food. A food that someone dislikes can be named something else, but if the texture or smell or appearance makes someone uncomfortable, it doesn’t matter what it’s called.

People will still stare and feel pity and revulsion about the disabled no matter how we characterize their intellectual or physical states.

I’m not sure that it’s a wise use of energy to try to change attitudes. That is done through real experience – by hanging out with disabled people. But that is not everyone’s cup of tea.

I think our best hope for changing perceptions is to live our lives with our children and fearlessly incorporate them into society.

But their value needs to speak for itself.

We can’t force, campaign or “language-massage” anyone into loving and respecting our children the way we do.

We can have an honest conversation about our deepest fears for them. And maybe we can put our energy into productive programs to protect our kids, like an extended circle of watch.

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Friends? Where?

By Cheryl D. Peters

Many of the blogs I follow regularly have been talking about friendship a lot. Even here, Louise has been talking about it as well. (Side note? When I read about Ben's birthday party, I wanted to call Louise and ask if I could come. Everyone needs and deserves friends along this journey called life.

A little background about myself and my family. I am a young (ish) mother to two beautiful little girls, Lauren who is 5 and Jillian who is 3 1/2 (photo left) and has been diagnosed with spastic diplegia cerebral palsy (CP). We live in Toronto with my husband and cat. One would say we don't quite fit in here. We arrived in 2007 for a three-month contract position for my husband's job. Since my husband is such a rockstar, three months has now turned into four years. We left all of our friends and family behind in Nova Scotia, and it's been quite the adjustment period.

I've always been a pretty social person. After growing up as a military brat, I adapted well to change and strived to meet new people. I suppose that's why I enjoy volunteering with Holland Bloorview so much. When we first arrived in Ontario, I had vowed to keep in touch with my friends back "home."

Meeting new people is strange when you're an adult. I can't just run up and ask them if they want to play with my toys with me. ;) Now that we have a special needs daughter, we're not eager to move away from here. Funny how things change.

I try not to feel sorry for myself, but I'm realizing how difficult it is to maintain great relationships with my friends from Nova Scotia while caring for a special needs child.

Shortly after Jillian was diagnosed, I had the pleasure of going out for dinner with a few other local girls. Funny, we were a group of special needs moms that needed some time away. I guess I brought up something about CP and later that evening, one woman confided in another friend of mine saying "I'm SO tired of hearing her talk about Cerebral Palsy all the time! Does she not know how to talk about anything else?" Ouch. Early into the diagnosis, I do realize I brought it up a lot, but it was mostly because everything was so uncertain. This woman and I never spoke again.

The friendships that bother me the most are people that I thought were my close friends. In fact, I was just "unfriended" on Facebook by someone I considered pretty close to me and my family. In fact, she was named as the godmother to our children. I do realize I haven't been the greatest friend as of late: I'm stressed and worried about school and an IEP process, not to mention worrying about spending enough time with my "typical" daughter as well as continuing all of Jillian's therapies. I tend to blame myself, that I should have been a better friend, but there comes a time when you reflect back and say "Well... you either call and talk about CP and dominate the conversation or you just say you'll call on another day...The phone works both ways and the beautiful thing about technology is that it can bring people that are farther apart, closer together."

So here I am. Four years into a three-month contract stay wondering where do you go to find friends? Perhaps I should put an ad in the paper. ;) I am so lucky that through volunteering with the family resource centre at Holland Bloorview that I have met some pretty fabulous people, and for that I'm eternally grateful.

Cheryl D. Peters is a member of Holland Bloorview's family advisory and blogs at The Beautiful Side of Hectic.

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