What Barbara Turnbull said about rehab and grief

By Louise Kinross

In 1983 Barbara Turnbull was shot during a robbery at a convenience store where she was working a night-shift as a Grade 13 student. Last Sunday, The Toronto Star, where she worked as a reporter, wrote that she had died at age 50 as a result of complications from pneumonia.

Barbara gave a fabulous talk at Holland Bloorview in 2002 about her 18 months in rehab and how she learned to navigate the world with quadriplegia and a lot of technology. I wrote about it in our staff newsletter at the time.

What jumps out at me as relevant today was a comment she made about professionals not allowing her to express her grief. "At one time, when I was going through the worst depression, a nurse said 'If you're not careful, people aren't going to want to be around you,'" she recalled. "It had such a devastating impact on me, because I felt I had to be upbeat for people or else I'd end up alone."

Holland Bloorview scientist Barbara Gibson spoke to BLOOM recently about how therapeutic environments may send the message that negative emotions are to be repressed. "Sometimes patients are made to feel that they can only express positive emotions with professionals," she said. "You know, 'we're all cheerleaders here.'"

I thought that was an important message to keep in mind.
What Barbara Turnbull told us she found most helpful during her rehab was talking to people with acquired disability who were further along in the journey and could encourage her and offer practical advice.

Photo by Toronto Star photographer Lucas Oleniuk

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Finnish punk band rocks disability awareness at Eurovision

PKN is a punk band that's a little different. The four men are middle-aged, Finnish, and have Down syndrome and autism. Next Tuesday they're competing in Vienna in the Eurovision Song Contest.

The group was chosen to represent Finland by popular vote.

PKN has toured in the United States, United Kingdom, Germany, Norway, Canada and the Netherlands.

They were the focus of a documentary called Punk Syndrome in 2012. Their first hit, sung in Finnish, includes the lyrics: "I don't want to live in a group home, I don't want to live in an institution."

I think this is very cool. Did anyone see them on tour?

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To our nurses: You are the heart of rehab

By Louise Kinross

When your child is an inpatient at Holland Bloorview, the staff you will come to rely on most are the nurses on your unit.

When your child moans in pain after his body cast is removed, because his muscles are in spasm, it will be a nurse who sits with both of you, remaining remarkably calm as you hyperventilate, and problem-solving to figure out a solution.

Our nurses are highly skilled in caring for children with complicated disabilities and medical problems—and their parents and families, who are often traumatized. They are ingenious in coming up with ways to distract kids from painful procedures or in making something unpleasant, like having a dressing changed or blood drawn or taking a medication, bearable.

Our nurses provide the best medical and emotional care to our children and families.

Of any staff member, it is our nurses who will be with your family the most during your inpatient stay.

Our nurses are our children’s greatest champions as they progress through the rehab process, and their constant allies when times are tough.

When my son was hospitalized here, we came to depend upon their handmade heating packs for pain: wrap three damp facecloths in a blue pad, secure with orange hospital tape and heat for a minute in the microwave. They were soft, moulded to the body and carried a bit of nursing magic.

When everyone goes home for the weekend and the hospital becomes a ghost town, and you feel incredibly lonely and alone, it will be the warmth and encouragement and presence of the nurses that lift your spirits.

Our nurses instill confidence in parents' ability to learn how to care practically for their child after surgery or trauma. They make what feels impossible possible.

Please join me in saluting all of our nurses at Holland Bloorview during National Nursing Week.

And please share a story about how a nurse made a difference in your life.

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Gabrielle steals the show

By Megan Jones


Gabrielle Marion-Rivard doesn’t enter a room. She arrives. Underneath her thick mop of curly brown hair the actress’s eyes and her smile widen. She radiates.


“It’s her magical light,” says Canadian film director Louise Archambault. “She has that presence on screen and that magic in her eyes. It’s rare.”

The two women met several years ago at Les Muses in Montreal, an organization that offers performing arts classes to people with disabilities. At the time, Gabrielle was a student and Louise was researching a film she’d written about a young woman with a disability entering adulthood.

Gabrielle has Williams syndrome, a genetic disorder associated with intellectual disability, heart problems and certain facial features. Those with Williams syndrome are often also extremely sociable, with an affinity for language and music. Gabrielle is no exception.

She eventually secured the lead role in Louise’s film—Gabrielle—which Louise named after her and released in 2013.


In it, she plays a young woman with Williams syndrome by the same name who is also a talented singer. Her character joins a recreational choir for adults with disabilities, where she meets, falls for, and starts dating another choir member, Martin—played by Alexandre Landry, who doesn’t have a disability in real life. On-screen, the two are inseparable, but as a result of their disabilities, their families are skeptical and cautious about their romance. Gabrielle is the story of a young woman with a disability fighting for independence, and the challenges and prejudices she faces. This year, the film won two Canadian screen awards for Best Film and Best Actress.

While Louise says the choice to cast Gabrielle in the title role was clear in hindsight, when they first met neither of them was sure if she could handle the part. Gabrielle had trained as a singer, not an actress. But the two were determined, and worked together for nearly a year in acting and improvisation workshops.

“The producers and I came to the conclusion that a professional actress probably wouldn’t have the same authenticity and spontaneity,” Louise says. “The role was hers.”

Gabrielle says she still remembers the day she got the part. “One day Louise called my house and asked me if I wanted to be in her film,” she says. “I was so very happy, so very excited. I said, ‘Hooray!’”

Louise had already written her script when she first attended Les Muses, but her experiences with Gabrielle and other students at Les Muses inspired her to rewrite parts. She also hired a number of actors with disabilities she met there.

On many occasions, Louise says the cast defied her preconceptions. During shooting, for example, a personal support worker was hired to help out on set in the event that any of the actors with disabilities became stressed or agitated. Louise says that while the first three days were challenging, once a routine was established, filming went smoothly. At one point a few weeks in, the support worker approached Louise and asked if she could go home. There was nothing to do and she was bored. 

The director says that working with a cast of actors with disabilities taught her to reimagine her expectations and think on her feet.

“I accepted that neither their acting nor their approach to the work was going to be perfect,” she says. “I had to let go so that the truth of their actions and reactions could surface.” 

At the same time, the actors presented some challenges that Louise wasn’t used to, she says, and she learned to adapt her set accordingly. Many cast members, for example, wanted to look directly into the camera—which gives footage an unrealistic feel when it’s played back. Rather than insist that the actors look away, the crew moved the cameras around frequently and captured long takes of each scene so they could pull the best material during editing. 

Louise also took advantage of spontaneity. “If there were two characters off in their own world whispering, that was something special. I would try to grab that for the film,” she says.

For Gabrielle, the challenges were different. The hardest part of filming?

“Oh my gosh. The love scenes,” she says.

“I’d never actually been in love in real life. I’d never actually been to a sex-ed class. I didn’t even know what a sex-ed class was!”

Sometimes she also had trouble with coordination on set. The scenes that required her to pick up objects in a certain order had to be shot multiple times. As she practised though, her coordination improved.

Gabrielle says that playing the lead role in the film taught her that she has a lot more autonomy than she imagined. She says this realization helped to boost her self-esteem. “I learned to accept my syndrome,” she says. “Before, I didn’t. But I learned that I’m capable of acting in a film that I was really proud of.”   

Today, the actress hopes to live in her own apartment eventually, like her character did. But for now, she continues at home with her mom.

For Gabrielle, working with other actors with disabilities was important, and she’s glad that Louise chose to cast those with real disabilities in as many roles as possible.

“They really understand the challenges their characters will face,” Gabrielle says. “And also it shows people what I can do despite my disability.” 

The actress hopes that the authenticity of the movie will remind a wide audience that young adults with disabilities also have goals and dreams, and that they are striving for love and independence, just like anyone else.

In particular, she encourages the parents of kids with disabilities who watch the film to keep these things in mind as their children transition into adulthood.

“They need to accept their children and encourage them to accomplish their dreams,” she says. “Let go. Believe in us.”

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The player

There is a tall, gangly teen on the basketball court outside my window.

He carries his right forearm up, his arm bent at a 90-degree angle against his body, his hand partially fisted. Sometimes that hand flaps.

His whole right side is stiff, it doesn’t move the way his left side does.

He bounces the ball with his left hand, shoots with the strength of his left arm and hand alone.

Sometimes after sinking a hoop he claps jubilantly.

He keeps shooting. Over and over and over again. From close up and far away. He lopes exuberantly around the court, unbothered by the unevenness of his gait.

He doesn’t give up.

When he leaves he walks past my window. I wave and he waves back.

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'Disability was home:' From big sister to anthropologist

By Liz Lewis

There's an old adage among anthropologists that you have to spend time in another culture to truly understand your own.

As an undergraduate researcher in Ghana, I knew I'd encounter different practices and beliefs about disability, and see firsthand the struggles of people who lacked basic resources.

I remember vividly the first time I saw adults with physical disabilities crawling on sidewalks, flip-flop sandals positioned carefully on their hands and feet to protect them from the rough ground. I'd been told about this and even seen pictures, but the image still shocked me. 

It was my first experience of "coming home" to disability after growing up with a younger sister, Katie, who has multiple disabilities and is deafblind (see photo above). 

Three months into my study abroad program, I embarked on the independent research portion of the curriculum. My study could focus on virtually anything that appealed to me. Pushed by my parents and encouraged by a family friend who was an international disability expert, I had been careful to set everything up in advance for my short-term project on blindness and social stigma. Our friend’s stories of working on deafblindness issues in Asia and Africa dazzled me, and I was curious about following in her path, even for only a short period.

On the first day of my project, I hopped a taxi from my temporary home at a local hostel to the office of the Ghanaian Association of the Blind. It was rush hour and Accra’s streets were packed. People selling gum, cigarettes, and compact discs wove their way between stalled traffic at lights, along with children and adults begging for money. It was here that I first saw adults with physical disabilities crawling on the sidewalks.

I arrived at the Association of the Blind and tried to make my way through the complex in search of the appropriate office. As a 21-year-old white American woman, I stood out. People were curious. Two men in their 20s approached me. They were not verbal, so they began signing to me. Although I did not understand most of what they said, we all grinned widely as we tried to communicate across the layers of barriers. They led me around the facility to the office where I was to meet an internationally respected disability expert, and we said our goodbyes. I recall a feeling of utter naturalness and comfort. It hit me: I was in the right place, in every sense.

This was the first time I truly felt the universality of my position as a person who grew up in the disability community. Until then and, indeed, for many years after, my feelings about disability in my professional life were marked by ambivalence. While part of me perhaps always knew I would end up dedicating my career to disability issues, I was reticent – scared, even – about committing.  Was I really ready to welcome disability into my work life, since it would always be a fixture of my personal world? And, if I didn’t want to be a special education teacher or service provider, what could I possibly do?

I had been immersed in the disability world since the age of four, when my sister was born. Although we did not know it for many years, Katie had CHARGE syndrome, a rare genetic condition found in about one in 10,000 births. I grew up surrounded by children with disabilities and their families. I visited the local parent resource centre with my mom, helped my parents flip through binders of special-ed law during our struggles to obtain appropriate school services, and I accompanied my parents on countless visits to doctors, specialists, and therapists. As the older sibling, it was my job to help and I took pride in it. 

Still, as is typical, I became less involved as I got older. I was busy with high school stuff – classes, extracurriculars, and friends – and then I went away to university. My love for Katie was unwavering, yet I noticed a growing public-private divide in my relationship with disability. It had become something that was confined to my family life, but my academic and personal realms were increasingly separate. Or were they? Although I felt that way at the time, looking back I can see clearly that I flirted with disability issues as a vocation throughout college. I simply wasn’t ready to commit, nor did I know where I fit in.

During my semester in Ghana, I was shocked by the level of interest among my peers and professors regarding my research. As a sociology and anthropology major, I had no idea that disability was even a viable area of study. I didn't know of any scholars in traditional academic areas who focused on disability, nor had I read or even heard of any books or articles on the topic. While gender, sexuality, and race were fair game in terms of identity politics, disability somehow remained in the shadows. Even if I’d been ready to pursue an academic career researching disability, I did not yet know it was an option. I had no models.

In the years that followed, I largely forgot about disability outside of my family life. I worked abroad briefly after graduation and then returned to the U.S., where I embarked on the typical life of many 20-somethings. I lived in a large city filled with countless restaurants and bars, worked diverse jobs of various interest levels, hung out with my friends, and met the incredible man I would later marry. 

For the first time in my life, I eschewed all things serious. I didn’t even do volunteer work! And I was totally and utterly bored. Young and relatively mobile, I took my meagre savings and moved to South America in search of more. After a position as a preschool English teacher in Ecuador ended, I wandered down to Bolivia in search of volunteer work and adventure. I began helping out at a residential centre for children with disabilities – many of whom had been abandoned – and also orphans. When I first toured the facility, I once again encountered that unmistakable sense of knowing. Disability was home.

The experience opened my eyes in new ways to disability realities I had not encountered. I saw multiple children whose disabilities – physical and intellectual – were inseparable from abuse in their former homes. Most of the kids never learned basic living skills, much less anything academic. Well-meaning and overworked staff, many of whom were just teenagers themselves, tied children to wheelchairs to keep them in place. 

I will never forget the day that my now husband, who was with me, realized that his favourite student could walk with assistance and did not need to stay in her wheelchair. Little Magdalena, who was known for giving wet, sloppy kisses on the cheek, spent her mornings over the weeks that followed dancing with my husband. She loved him. We marveled at her secret abilities and wondered what else she might have been able to do with adaptive technologies, educational funding, and family and community support.

I came back to the U.S. with a new sense of direction. I began an interdisciplinary Master’s degree program and promptly fell in love with a class on the anthropology of disability. I had not known the topic even existed! Finally, I was exposed to disability studies literature, as well as social science and humanities approaches to disability. I was hooked. I read everything I could find, wrote a thesis about parent advocacy efforts, and set out to find my dream job in disability. Unfortunately, it remained elusive and I wandered elsewhere, dedicating myself largely to issues of education, migration, and human rights. As always, I was drawn in by the individual faces and stories behind broader lived experiences, yet I had little interest in working my way up a nonprofit ladder. I wanted to stay in the thick of it, to immerse myself in life histories and absorb everything people would reveal. After years of fighting it, I gave in: it was time to get a PhD in cultural anthropology.

Five years later, I can finally say that my old ambivalence is gone. I have immersed myself in the formal study of disability and am pleasantly surprised by the support I have received from the academic community and beyond. I spend my days reading, writing, and talking about disability issues, and I am lucky to be involved with some fantastic local organizations. I have conducted research in Central America and the U.S., presented papers at multiple conferences, and I am in the process of writing a dissertation on family experiences with complex diagnoses. 

Every aspect of my work is informed by my own experiences as a sibling, and I am honored and humbled by families’ willingness to grant me a small window into their stories. I feel so lucky to be part of a nascent but growing group of social science and humanities scholars working in the area of disability. I am also steadfast in my commitment to generating scholarship that reaches beyond the walls of academia. I hope that my work will be read by families, organizations, professionals, and policy makers. As a sibling-researcher, these are not abstract aims. I literally think about them every morning as I sit down to write or each time I meet with other families. These goals animate every step I take.

I still do not know how I fit into the dominant perceptions of what it means to be a sibling of someone with disabilities. My parents were warned when Katie and I were young that I would likely be jealous or resentful of her, since she would receive so much attention because of her disabilities. This always struck me as ridiculous, even as a child. Did experts really think that I was selfish enough to resent my parents’ attempts to find new therapies or educational techniques? 

Another concern was that I might develop so-called problem behaviours and act out in response to our family’s struggles. In reality, I never felt like that was an option. My family had our hands full and simply didn’t have room for me to do poorly in school or get into trouble. As an adult, I am not convinced that this pressure was a bad thing. Did I miss out by pushing myself to make good grades and not get caught up in boys, partying, or risky behaviours as a teenager? 

The discourse on siblings still hinges on a curious paradox: whether we are too good or too bad, we will still be pathologized. Our behaviours are all too often explained in terms of our sibling status. This is an extremely problematic gap in understandings of who we really are as a diverse group of individuals with different goals, anxieties, and hopes, who happen to be unified by our sibling status. Can I explain many aspects of my personality in terms of my experiences with Katie? Yes, but that doesn’t make those explanations correct, nor does it reveal anything about how I might have turned out in a different family context.

Even today, I struggle to express my childhood feelings about Katie’s disabilities for one simple reason: Katie was normal to me. I knew nothing else and, even in the earliest weeks of Katie’s life, when we did not know if she would survive nor did we understand the complexity of her intellectual and sensory disabilities, I was fiercely proud of her. She was my sister. She was the only sister I had, the only sibling relationship I would ever know. 

As I prepared to enter high school, my family became involved in a heated dispute over Katie’s educational rights. I do not recall speaking to any of my friends about it until my final year of school, but that silence was part of a broader social protocol. My peers and I restricted our conversations largely to things like boys, clothes, and gossip. I later learned that some of my friends had faced serious family struggles during that time – addiction, mental illness, infidelity, violence – yet we didn’t discuss these experiences until much later. Perhaps disability had less to do with my silence than I used to think.

Even at the peak of my family’s legal battle to meet Katie’s educational needs, the only profound feelings of sadness and anger I had were directed toward the failure of the institutions we relied upon to meet our needs, not Katie. The key is that these needs were all of ours. I learned early that the perfect families depicted on television are nothing but fiction, and in reality we all have our struggles. I realized, too, that we live in a world in which people are literally cast aside. This was probably the hardest thing to process as a teenager, and I recall a palpable sense of grief for the naïve optimism I saw in many of my peers. 

Still, the biggest emotional struggle for me as a teenager was my lack of a network of other siblings to relate to. Not only did I have no one to talk to who could truly relate to my experiences, but I had no models. This was before the days of Facebook and disability listserves, and I would not learn of sibshops until years later. The only sibling support groups in our area were for brothers and sisters of kids with autism, so that didn’t work. Without anyone to follow, I simply did the best that I could. I winged it. Once I began college, I made an explicit effort to open up about my experiences with Katie from the start. I learned very quickly that people were genuinely interested in hearing our story, and my previous silence was broken.

Looking back at my circuitous path, I should have known that I was a researcher at heart. My passions are meeting families, hearing stories, writing what I see, and sharing these powerful disability realities with people who might not encounter them otherwise. My aim is, and perhaps has always been, to get the word out. I want to learn, witness, and disseminate. 

I want to be part of a small, but growing, effort to push disability from society’s margins and into mainstream discussions. I want to do everything I can to make sure that other siblings do not feel as isolated or singular as I did when I was younger, and to encourage scholars and journalists to take disability seriously – not as an object of pity or a source of stigma, but as a very real aspect of the human experience that will touch each of us in some way. 

I want to tell Katie’s story, to use my own family’s experiences and those of others like us, to effect change and make people listen. It took me until now, as a married mother in my 30s, to really embrace this as my professional destiny, but I think I can finally say that my old ambivalence is gone. Let’s do this.

Please follow Liz on her fascinating blog Disability Fieldnotes or on Twitter @LizLewisAnthro.

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Disabled artists get a new platform for their work

By Megan Jones

Open the closet door in Liz Powers' Boston-area apartment, and you’ll come across a trove of artworks: a painting of a woman by the seaside, her soft purple dress billowing across the canvas; an image of a ship’s mast made of a single piece of paper, each detail painstakingly cut out by hand; an abstract painting of a pond populated by swans with backs that look like turtles’ shells.

All the works are created by artists who are homeless or low-income, or who have disabilities. Liz stores them in her apartment for safe-keeping, until they can be sold on ArtLifting, a website the Harvard graduate launched earlier this year with her brother, Spencer Powers.

The online gallery grew out of City Heart, an annual art show for homeless and low-income artists—some of whom have disabilities. Spencer and Liz started the show in 2011, and in the past three years, it's grown to include 70 artists from eight different homeless shelters.

At last year’s City Heart, the siblings were approached by impressed customers who wished they had more access to the artists’ work. “It was a recurring problem that tons of amazing work was created, but the artists didn’t have a good way to share the work with the community and sell it,” Liz says.

“Lots of people came up to us and said ‘Why just one day a year?’ We didn’t have a good answer, so we decided to start ArtLifting.”  

The works for sale include original paintings, prints and iPhone cases. Artists help to set the price, specifying how much they expect to receive for their pieces. An additional sum is then added to make up the final sale price. That money goes towards maintaining the site, and purchasing supplies to support a number of community art groups ArtLifting partners with. Pieces range in price from $34 for an iPhone case, to several hundred dollars for larger works.

Four months after launching, the site has partnered with a roster of about 15 artists who are in their mid-20s to mid-60s. A few of these artists have physical disabilities: for example, ArtLifting recently signed on four participants who have quadriplegia. As the program expands, Liz and Spencer plan to work with artists with developmental disabilities as well as those creating art in hospitals and disability centres. As a college student, she wrote a thesis looking at the social benefits of art therapy.

Allen Chamberland, 48, has used a wheelchair since he was a child as a result of respiratory issues. He was one of the first artists to sign on with the website. He has been making art in a variety of forms his whole life, and currently uses paper-cutting techniques to create intricate images of landmarks like the Charles River Bridge and the Christian Science Church (he appears in the photo above with ArtLifting co-founder Liz). The pieces are so detailed that larger works can take the artist a whole week to complete, even when he dedicates four or five hours a day to cutting.

Allen says ArtlLifting gives him a sense of accomplishment. “It validates your work,” he says. “It feels really good when someone’s really willing to buy something you’ve spent so much time doing.”  

It also allows opportunities to artists who might not normally get a chance to sell their pieces, he says. Prior to signing with ArtLifting, Allen relied on craft fairs to sell his work and supplement the income he received from disability benefits. 

But weather-related mobility issues made it difficult for him to attend fairs in the winter. Sometimes Allen would go months without selling a piece. Since joining ArtLifting, he says his winter sales have been more successful. All but a couple of his pieces were sold through the site from November to January this year.  

As the program grows, Spencer and Liz are looking to partner with hotels and businesses for larger, bulk sales. In the past few months, the siblings have been successful setting up two corporate contracts with business owners. They started ArtLifting using their own savings, but hope that soon, larger deals like these will allow the site to become self-sustaining.  

The duo are aiming to expand their reach beyond the Boston area, empowering as many artists as possible by helping them support themselves financially, and showing the public what they’re capable of creating.

“For people with disabilities, a lot of times outsiders focus on the negative,” Liz says. “They say things like ‘Oh, that’s too bad you’re in a wheelchair.’ But ArtLifting is a strength-based program. We focus on people’s talents.”

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Where is she now?

Two weeks before the end of her Grade 10 school year, Irene Tran—a bubbly teenager who excelled academically and was an accomplished pianist—was rushed to hospital with a ruptured brain aneurysm.

When she came to Holland Bloorview for rehab, Irene was paralyzed on the right side, struggled to speak and had lost the ability to read, write and do math.

Irene’s dreams of going to university were derailed. She couldn’t return to the academic stream at her school. Instead of graduating from high school in two more years, she had to put in five more to earn her diploma.

Everything changed, Irene says, but it wasn’t all bad. Now, seven years later, Irene’s at university in early childhood studies and works part-time at one of Holland Bloorview’s integrated nursery schools (see photo above).

Before her injury Irene says she had a rigid way of viewing success. "I’m going to university and I’m going to grad school by the time I turn 22," she remembers saying.  

"After my rehab I began volunteering at Holland Bloorview in the school and in recreation therapy. I found I really like working with children and with kids with special needs. Then job opportunities came up because of my volunteer experience.

"...I never would have gone into this field prior to my injury because I didn’t have exposure to people with disabilities."

Read about how Irene managed life after brain injury in the winter issue of BLOOM magazine, out at the end of January. E-mail me if you'd like to receive a copy lkinross@hollandbloorview.ca

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Who decides what's beautiful?

Carly Fleischmann, a University of Toronto student with autism and a prominent disability advocate, has launched a brilliant Facebook campaign calling for a COVERGIRL model with autism.

Carly is a teenager who was unreachable until she typed a message on a computer at age 10. Her story's been covered widely in mainstream media and she co-authored Carly's Voice: Breaking Through Autism with her dad Arthur.

Now Carly is asking: "Why can't we all be cover girls?"

On its Facebook page, COVERGIRL says it's "an advocate of women rocking their own kind of beautiful."

I'd like to see examples of that in its advertising. 

Carly's campaign is timely because tonight we have New York fashion photographer Rick Guidotti talking about his own quest to redefine beauty at a BLOOM speaker event.

Rick has worked all over the world shooting for companies like L'Oreal, Revlon and Yves Saint Laurent.

But he left that industry to travel the world capturing images of children we don't usually get to see in popular media: those with genetic conditions. 

Children who look different in this way are typically rendered invisible in our culture. You don't see them in mainstream advertising or as part of the parenting magazine landscape.

"In fashion I was always frustrated...because I was always told who I had to photograph," Rick says. "I was always told who was beautiful."

Rick's non-profit Positive Exposure "gives people permission to see beauty and interpret beauty in their own right," he says. "These kids are gorgeous, we're just not allowed to see it."

I love that two trailblazers—Carly and Rick—are asking us to open our eyes to the idea that we choose to see beauty. It's a choice!

And in other news touching on beauty and disability, special-needs bloggers were quick to demand Sephora withdraw a new lipstick its promoting called Celebutard. The Kat Von D lipstick combines the words 'celebrity' and 'retard.' The company says it's pulled the product (although it still appears on the Sephora website).

Enough said.

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'I've always been able to push myself'

Ade Adepitan (right) is a British Paralympic basketball medal-winner, an actor and a filmmaker whose documentary Journey of My Lifetime took him back to his homeland of Nigeria to investigate why the country has yet to eradicate polio, which he contracted there as a toddler.

In an interview with The Guardian, Ade spoke about playing wheelchair basketball as a teen in London. “The disabled kids were just cooler, wilder, got up to crazy things,” he said. “We’d be out in the streets racing our chairs, playing basketball, travelling all over east London like a crew. It felt like I belonged.”

Ade’s older sister Omoyile has Down syndrome, so he has a unique perspective on physical and intellectual disability.

BLOOM: Your family moved from Nigeria to London when you were three for better prospects for you, but your family couldn't afford to bring your sister, Omoyile.

Ade Adepitan: They had to beg, borrow and steal everything they could just to get themselves over to the UK. At the time in the '70s if you didn’t have a British passport and you wanted residence you weren’t allowed to access the National Health System for two years.

So my parents had to pay for all of my health care for two years off their own back. And when you come from Nigeria, what people earn in the UK in a month they would hope to earn in a year. So my parents had to pay for braces, operations, sometimes going into hospital.

My dad and mom were qualified as teachers but because they were black, they couldn’t get professional jobs here when they came in the '70s. They had to work as cleaners and security guards, doing two to three jobs at a time while going to college in order to pay for me. My mother and father had to leave their whole family in Nigeria, and my older sister had to stay with my brother’s sister. She would have been four or five.

BLOOM: What was it like when Omoyile finally joined the family in London 10 years later?

Ade Adepitan: It was strange because I didn’t know she had Down syndrome. I left Nigeria when I was three and you don’t understand what Down syndrome is at that age. When she arrived I was a little bit confused. My parents were really happy but it was also quite difficult. I'd been the centre of attention because my younger brother and sister were still fairly little, and all of a sudden my sister comes from Nigeria and she was the centre of attention.

I was 13 and just starting to become a teenager and she was 14 or about to turn 15. It was like getting to know a stranger. Except because she had Down syndrome she had a mental age of about seven, so she was my older sister but she was actually younger than me. All of those things were complicated and difficult to understand.

BLOOM: How did your parents talk about disability?

Ade Adepitan: My parents were always of the philosophy that we should never really be talking about disability but talking about our ability. They weren't keen on me using a wheelchair and wanted me to walk all the time because they thought if I used the wheelchair it was like me giving up and taking a step backward. So in those terms it was quite difficult and you could maybe almost say my parents were a little backwards about disability.

But in the context of education my parents were very adamant that I go to a mainstream school and not a disability school and fought hard for me to go there. And even though my sister went to a special school, my dad fought hard for her to get a City & Guilds qualification in catering, which normally children with special needs don't get. My sister was one of the first kids in our area of the UK to get it, so my parents were very pushy in one respect.

BLOOM: Because of the stigma of intellectual disability was it challenging for you as a teenager to accept your sister?

Ade Adepitan: She was the first person with intellectual disability I'd ever met. You're a teenager and you go through that moody stage where it feels like the whole world is against you. Then this sister comes along and she needs a lot of attention. She was very skinny and there were worries about her health.

I was still going through ‘How do I get over the fact that I'm disabled and have a physical disability?’ and you want to fit in and you don't want to be different. I’d almost come to terms with that and I was thrown this curveball: now I’ve got a sister with an intellectual disability—that was like a double whammy for me.

BLOOM: In The Guardian you talked about how you learned how to walk with braces and how it was very important for your parents that you walked.

Ade Adepitan: For my parents who came from an African culture there was a lot of stigma associated with being in a wheelchair. Even in the UK in the 80s there was a lot of stigma. For my parents it was really important that I walked on callipers to my school which was a mile away.

It was a really hard walk and then my school was a massive school so getting to lessons was really difficult and there was no lift or ramp, so I had to climb the stairs, and I was carrying heavy books with me. By the end of a school day I was exhausted.

BLOOM: You've said that once you learned how to use your wheelchair it was freeing.

Ade Adepitan: When I finally started to use a wheelchair I was really embarrassed for my able-bodied friends to see me in it. But once I got over that it was a godsend and it changed my life. What the wheelchair gave me was independence.

A lot of people ask me why I got into sport, and the most important reason was that I knew if I was fit and strong, I wouldn't have to rely on anyone. When you’re disabled that’s one of the most important things: you have to be fit and strong because you’re not as physically able as other people, so you have to compensate for it with things like fitness.

I found once I was in a wheelchair I could travel long distances. Walking a mile would take the best part of half an hour, but I could push it in my wheelchair in five or six minutes. You can imagine the kind of independence that gives you. Suddenly I could travel anywhere.

BLOOM: Yet when I was in London recently I was struck by how inaccessible the tube and train system is.

Ade Adepitan: When you live in London and you have a disability you have to be almost like Indiana Jones. Every journey is like an adventure and you might as well be crossing through valleys and swimming rivers and stuff. Most of London’s transport system was built during the Second World War or just before and it's inaccessible and that in itself makes things very difficult. It could hold you back if you had a disability and you had to have a very strong mind set and be stubborn.

BLOOM: What was it like in other ways growing up with a physical disability?

Ade Adepitan: In the '80s when you were in a wheelchair or had any sort of disability people assumed you weren't as intelligent as other people and they overlooked you, they didn't really talk to you. Some people called you names like cripple.

For me I had the added thing of being one of the few black people in the UK. I was black and disabled and I felt like I was being hit on all sides. There were some days I felt like I didn’t want to go out of my house I was so pissed off at the way people acted around me. Just the fact of people staring some days made me feel really uncomfortable and I'd think why do I have to put up with this? It took a long time for me to embrace my disability. There was quite a period where I was ashamed.

BLOOM: You've spoken about how you joined a local basketball team that gave you a lot of confidence.

Ade Adepitan: This basketball team was set up by some physiotherapists and their philosophy was about independence. They wanted to make the young disabled individual as independent as possible as quickly as possible because they knew that in later life to be able to go out and have the confidence to travel around London and be yourself in front of people, and not be ashamed of it, you had to be built up and prepared.

When I joined this team I met a load of people my age or a little older and they were extremely confident. They were way more confident than my able-bodied friends, more adventurous and they took more risks. I thought they were cooler than my able-bodied friends.

BLOOM: You've said that the team gave you a feeling of belonging.

Ade Adepitan: Yes. As I started to play more sport I gained a lot more self-esteem. When you're good at something it boosts your confidence but it also gains you respect from your peers, especially your able-bodied peers. Rather than shying away from disability I started to be more overt about it. I'd go around in a wheelchair doing wheelies or talking about how I could be playing for the Great Britain team. My friends at school thought I was the cool one.

BLOOM: What was it like growing up with physical and intellectual disability in your family?

Ade Adepitan: My physical disability and having a sister with an intellectual disability made me so much more open-minded. It meant I also grew up a lot quicker than my peers. I certainly knew more about different groups of people.

Most of my friends would freely admit I was the only disabled person they knew and none of them knew anyone with an intellectual disability. It was no longer a shock for me to meet someone with a disability. I was able from a young age to look beyond people’s disabilities and see them as people. There's only so long you can dwell on why this person has such and such and after that it’s more about the person’s personality.

My sister may have an intellectual disability but she can be stubborn, she can be really intelligent, she can be really humorous and she can be quite annoying as well. People with disabilities have all the same traits as anyone else and that's what I see now more than I see the disability. That came from my upbringing.

BLOOM: Even within the disability community some disabilities seem to be valued more than others.

Ade Adepitan: One of the flaws of the human race is that we have to put everything in groups. It’s easier for us to label people and use a hierarchy in order to understand the world. I’m not like that and I think that’s because of my upbringing.

A lot of people think of intellectual disability as the lowest in the hierarchy of disabilities, but even within physical disability there’s a hierarchy. I think people who are deaf and blind probably don’t categorize themselves in the same position as someone who has a mobility impairment. And even within mobility impairments, at the top of the tree are the amputees and at the bottom are the quadriplegics.

It’s the weirdest and most horrible and most divisive part of the human psyche—our want to categorize everything.

BLOOM: What do you think about prenatal testing for Down syndrome?

Ade Adepitan: It’s something I’ve thought about for a while. I’ve wondered if my parents knew that I was going to be disabled, or my sister, would they have still had us, and I don’t know. I think it comes down to individual choice and I can’t make people’s decisions for them. I can say look, I’m disabled and my sister has an intellectual disability and our lives have been just as rich as any able-bodied person’s. Okay, there are complications, but there are complications in all walks of life, whether you’re able-bodied or disabled. I don’t think life is going to be as hard as [parents] think it will be with a child with a disability. And you’ll be enriched in different ways.

BLOOM: How can we make the world an accepting place for people with disabilities?

Ade Adepitan: Everything starts from what you learn as a youngster. All kids going to nursery or kindergarten should be mixing with kids with intellectual and physical disability from that young age.

Intolerance comes from ignorance and lack of knowledge and lack of knowledge comes from lack of experience. We need to mix all these different groups together from the age of three, four, five and stop separation. Separation is what creates intolerance.

BLOOM: There seems to be less inclusion of children with disabilities in classrooms in Britain.

Ade Adepitan: Over the last 10 to 15 years they’ve embarked on what we call mainstreaming and that’s putting kids with physical disabilities, and sometimes with intellectual disabilities, into mainstream schools. We’re probably nowhere near where we should be. Yet in some ways we’re quite advanced.

Last year when you saw the Paralympics our public really embraced it and had so much respect for people with disabilities. But our government doesn’t always reflect the attitudes and feelings of the general public and that may be because our government isn’t representative of the people they’re governing. There aren’t enough people within the government who have that direct experience with disability.

BLOOM: I understand you’re doing some work with the United Nations.

Ade Adepitan: I’m involved in trying to get disability and the rights of people with disabilities included in the UN’s Millennium Goals. They drew up a load of goals to do with improving sanitation and uplifting women in developing countries, but of eight goals they never made mention of disability.

A British politician is lobbying the UN to get disability on the agenda and she’s asked me to go on a trip to Uganda. Apparently Uganda has a very good record in the way it treats people with disabilities. We’re going over to see exactly what it is they’re doing and to see whether we can pass any of it on to other developing countries.

BLOOM: Tell us about the documentary you did on polio in Nigeria.

Ade Adepitan: I’ve been trying for years to do something about myself having polio and being born in Nigeria, but TV is a ruthless world and the execs didn’t think a show about polio was something that would be high on the ratings.

But after the Paralympics was such a success, Channel 4 put me in touch with some really cool directors who’d been doing some research on the problems with Nigeria’s vaccine campaign. Vaccinators had been shot dead by Islamist militants who claimed the vaccines were part of a Western ploy to sterilize children and wipe out the Muslim population. So the two things came together and it was magic.

BLOOM: What was the purpose of the film?

Ade Adepitan: We went back to find out a little about my backstory and why I got polio but also to find out the statistics and the story of polio there. There are only three countries where polio is still prevalent and Nigeria is one of them. Nigeria is the only country in Africa where polio is endemic. Why Nigeria? It’s a wealthy country in comparison to other African countries and it’s relatively stable, there’ no war going on there. So in comparison to its neighbours, we didn’t understand why.

BLOOM: What are the barriers to eradicating polio in Nigeria?

Ade Adepitan: Polio is prevalent predominately in the north of Nigeria where there’s a serious lack of education. A lot of people don’t go to school because of poverty and are illiterate. So they don’t have the knowledge to understand about polio and its impacts.

There are also people who are very nomadic in the northern parts. So it’s difficult for vaccinators to locate them. And polio is very contagious. One person with polio has the potential to infect 100 people yet 95 per cent of people who carry the polio virus will show no symptoms.

The sanitation system in Nigeria is terrible and that’s the way polio is transmitted: through fecal matter.

Back in 2003 there was a vicious rumour spread that polio was a Western ploy to control the Nigerian population, especially the Muslim population based in the north. And that the polio vaccine contained a contaminant that made children infertile. There was an uproar in northern Nigeria and the government suspended the polio campaign for nearly a year. The polio numbers shot back up and Nigeria has never recovered from that.

On our trip we met some people who refused to have their children vaccinated and there are still a lot of people who believe that the vaccine is part of what they call the white witches—part of the white evil medicine to depopulate northern Nigeria.  

There were some heartbreaking stories. We met one guy whose 18-month-old son wasn’t vaccinated and has polio. He can’t walk and crawls on all fours. In the part of Nigeria where he lives, you don’t want to look on the ground because it’s full of sewage and the stench is disgusting. This boy has to crawl through that stuff. 

He probably won’t go to school because the schools aren’t accessible, so he won’t be educated, his chances of getting a job are low and his life expectancy is low. His life is going to be very, very hard before he dies.

BLOOM: What would your life have been like if you’d stayed?

Ade Adepitan: My parents were pretty well educated, both were teachers and come from a family of teachers, so they would have worked really hard to make sure I had as good a life as possible. But my mom was alarmed and worried enough that she was willing to leave her family in Nigeria to come to the UK to give me a better life.  

There’s no comparison of how my life would have been. The opportunities that I’ve had since I’ve been in the UK—I work on TV, I’m a known face in the country, I’ve represented my country as an athlete, I’m respected despite having this disability, people talk about me rather than my disability and I’ve been able to be educated—all of these things would have been greatly reduced.
 

My sister who stayed in Nigeria really struggled at school. They didn’t know what Down syndrome was and for the first few years she was put in a mainstream school and the teachers treated her really badly because they didn’t understand her disability.

BLOOM: Tell me about Omoyile’s life now.

Ade Adepitan: She lives with my mom and she gets to do loads of different things. She’s really into drama and going to drama classes. She’s into art. She’s on a work training course to try to find a placement. She’s worked before but because of the economic problems in the UK she was let off. But now she’s doing some training and maybe will find a placement in a canteen or cafeteria or in a super store.

Omoyile’s a feisty character. She’s got a really strong personality, she’s got a sense of humour and she’s really mischievous. She’s opinionated as well and she’ll work someone out straight away.

BLOOM: You talked a lot about the importance of independence. What about people who have more significant disabilities who can’t have that level of independence? Can they still have rich lives?

Ade Adepitan: I’m sure they can. When I talk about independence it comes on many different levels and in different forms. Independence for me is something you would take for granted, like getting on public transit and going to the mall or to work. But for me it’s something I have to plan if I haven’t got my car.

For someone who is more restricted, they have to find independence within what they can do, and independence may be having the choice of who they have as their carer.

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

Ade Adepitan: You have to be open-minded, open to everything and surprise yourself. There are lots of things that my family—me and my mom and dad and sister—have achieved that we thought we’d never achieve.  When you start off trying to tackle these tasks, you get into thinking this might not work, but that’s not a reason not to try it.

Don’t be afraid to make mistakes. Mistakes are part and parcel of life and you learn a lot from those mistakes. You should go out there and surprise yourself.

There are things you may think your children can’t do and they might not be able to do it now, but with some work they probably can. In 20 years we’ll be looking at people with all kinds of disabilities and being surprised and amazed at what they can do and looking back and thinking 20 years ago how primitive we were to put so many boundaries on our kids.

BLOOM: Do you consider yourself a filmmaker or an elite athlete or an actor, given you’ve done all of the above?

Ade Adepitan: I don’t think of myself in one way. I’m doing such a variety of things. I’ve made four documentaries. The last one was in Mexico about mental health. It was a really intense documentary about the treatment of people with psychiatric disabilities in institutions, and also about a group of people who have psychiatric disabilities who have come together to fight for their rights.

I’ve been so lucky. If someone had told me 20 years ago when I was dreaming of being an international basketball player that I’d be able to go to the Paralympics and win medals I’d have struggled to believe it. If someone said that on top I’d forge a career on TV and be making quite tough and hard-hitting documentaries I would have thought they were taking the mickey out of me and having a laugh.

So many doors have opened. The United Nations has asked me to work with them; I’m asked to go into schools to do talks; I still play sport and have a team that we’re trying to set up to become a type of academy of excellence for disabled kids.

Life is short, we don’t know how long we’ve got and what will happen tomorrow. So it’s about maximizing your skill set and what I’ve learned and really enjoyed over the last 20 years is I’ve always been able to push myself and be at the edge of what I’m doing.

This year I made a documentary on changes in benefits for people with disabilities in the UK. That was incredible because that meant I had to tackle things with a journalistic brain. Every day was learning something new.

Then I went off to Nigeria to make the documentary about polio. It pushed me emotionally and was tough on my presenter skills. I had to learn how to interview people.

Following that I made a documentary in Cuba about athletes defecting. I speak a bit in Spanish but we decided that all the interviews would be done in Spanish. And it was the same in Mexico. I’m challenging myself. 

Photo from Channel 4.

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