In 2019, physical restraint of disabled people is still a thing

Illustration from Captive and invisible

By Louise Kinross

A couple of months ago I wrote down 'physical restraint and seclusion' as a story idea. But when I looked at it on the list, I kept hoping there would be a reprieve. 

Instead, every time I went on social media there was a new horror story about disabled children and adults who were restrained, physically or verbally abused, or locked in a school isolation room, hospital, assessment unit or 'care home' for adults. 

Yesterday, I read Captive and invisible. It's a series of stories about disabled people who are locked away in hospitals, institutions and private homes. It was produced by the UN Special Rapporteur on the rights of persons with disabilities. One of the stories is about people in Ghana, for example, who are sent to prayer camps, to be healed, where they are shackled and live in horrendous conditions. Catalina Devandas Aguilar, the UN expert, discusses the series here.

The selection of stories, such as the one in the image above, suggests that the problem is in developing countries. "Amil is autistic, and he lives in a rural village with his family," is the text that accompanies it. "They have no help, and there are no services in the community, so he spends all his days and nights locked up in a room."

But this isn't just happening in low-income countries. It is happening in Europe and the United States and right here at home in Canada.

Last month, the BBC aired a shocking investigation into a British home for adults with autism and intellectual disabilities. The home, funded by the National Health Service, is referred to in the British press as a 'specialist hospital for people with learning disabilities,' which is the term used there for intellectual or developmental disability.

A reporter went undercover as a worker and filmed her colleagues taunting, intimidating, degrading, provoking and repeatedly restraining patients. They bragged about times they'd assaulted patients, like banging a person's head against the floor. Then it was revealed that patients had reported bullying by staff in an inspection report in 2015 that was never published. Last year, the home was bought by an American multinational company. What interest, other than monetary, could a U.S. multinational have in a British hospital for people with intellectual disabilities? Ten staff members were recently arrested.

A similar case in New York City came to light five years ago in a home for adults with developmental disabilities dubbed the "Bronx Zoo" by staff. But despite an investigation that found staff at the state-run home smacked, pushed and punched residents, New York State officials who tried to fire 13 employees for abuse or neglect were unsuccessful.

According to an article earlier this week in The New York Times, the workers were shielded by the state arbitration process. In addition, The Times found that over one-third of employees statewide found to have committed abuse offences at group homes and other facilities between 2015 and 2017 were put back on the job.

Which reminded me of my own son's experience back in 2009, when a school staff member, angry because he picked a butt up off the ground in a park, and pretended to smoke it, dragged him across the playground and pushed him into his wheelchair. He had a dislocated hip at the time. Other staff reported this person, but the principal didn't deem it necessary to call me until 24 hours later, when she asked if my son had told me about an 'incident.' No, he doesn't speak, he hadn't, I said. It wasn't until that night, when I asked him about it, that he signed the story to me. He never would have told me otherwise.

The staff member was sent home, the police were called, and I was asked to check for bruises. I was told that the staff member would never be in a class with my son again. Imagine my surprise, then, when the following year, this same staff person turned up working at the mainstream school my son had transferred to. And had the nerve to approach, and talk, to my son. So I had to call the principal and read him the riot act that this person was to have no contact with my son.

Only two days ago, this piece in The Globe and Mail summarized the Canadian practise of physically restraining or isolating, in locked rooms, children with autism or other disabilities who "act out." Sheila Bennett, a professor at Brock University in St. Catharines, Ont. was quoted as saying she was horrified to hear about a plan to build more seclusion rooms in Ontario school districts. "When an isolation room exists, it becomes a viable alternative for behaviour and inhibits our ability as experts and educators and compassionate people to find solutions that work better," she said.

In April, a British teenager with autism and mental health problems who had spent two-and-a-half months in an isolation booth at school, a variation on the isolation room, where students sit in cubicles in silence and have no direct teaching, tried to kill herself. Her mother said she was unaware, for months, of what was happening.

I'm not an expert, but how could any educator possibly imagine that a child with autism and anxiety would blossom sitting alone in silence?

Just yesterday, I read a post in a closed Facebook group for parents of children with disabilities where a local parent asked if a school has to document every time a staff member physically restrains her child. She'd been asked to pick up her young child in the morning, and it was only after he was in the car that she learned that a teacher had put him in a hold. 

A teacher can restrain a child in a physical hold, and not tell a parent about it?

In 2019?

In another Ontario online group a parent spoke about how her adult son with autism has spent months in a locked psychiatric hospital because there are no options for him to live in the community. And she knows of a handful of families in similar situations.

Last week the photo below was tweeted by many British parents to show what it's like for a parent in the U.K. to visit their autistic teen who is locked in an inpatient mental health facility. 

How did being held like a criminal become an accepted practice for disabled children and adults in our schools and hospitals and group homes?

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'I'm calling attention to the whiteness' of health care

By Louise Kinross

Sarah Jama is a co-founder of the Disability Justice Network of Ontario. She has a long history of disability rights and anti-racism activism. While studying at McMaster University, Sarah headed the National Educational Association of Disabled Students for a two-year term. She also founded Maccess—the first peer-run service for students with disabilities at McMaster. This Wednesday Feb. 6, Sarah is speaking on Moving Toward A Disability Justice Revolution at Hart House at the University of Toronto. I learned a lot about her work through this video of a talk she gave last year called We All Deserve the Right to Life.

BLOOM: In your video, you talk about how you learned at age four that as a black, disabled girl, you didn’t have the same right to bodily autonomy as others. This happened here, at what was then the Hugh MacMillan Rehab Centre, when you came for your first physiotherapy appointment.

Sarah Jama: I was saying ‘No, I don’t want to do this,’ and they started to stretch my leg and my mom was freaking out, because she didn’t understand why it was painful. They asked her to leave the room, in order for the physio to continue, and she watched behind a two-way mirror, because she didn't want to get a coffee as they suggested.

When I talk about navigating the medical system with an immigrant family, a lot of times, without meaning to, people in medical positions play the role of the expert: ‘We know what’s best, therefore these things over time will be the best for your daughter.’ When the parent, or the person, isn’t seen to be the expert, there’s a lack of communication.

BLOOM: You said you and your mother were both in tears. Another time, when you were a teen, doctors wanted you to have a surgery. You didn’t want to have it, because it would mean you wouldn’t graduate on time with your peers. You had also had the same surgery at age 12, and it didn’t give you the result you expected.

Sarah Jama: The surgery, from my perspective, was an aesthetic one. It didn’t work the way I thought it would when I was 12. And it took four months for me to be fully rehabilitated. The surgeon looked at my mom like she was absurd in supporting me in my right to say no.

I talk about how these kinds of interactions, over time, can influence someone’s perception of bodily autonomy—that it means not having a say over certain areas of your life. Some people are viewed as experts over racialized bodies, which is dangerous when coupled with a lack of cultural competency.

An example is the criminalization of black and indigenous folks with invisible disabilities. Soliman Faqiri and Abdirahman Abdi and so many others with autism or schizophrenia have been killed by those meant to serve and protect, because being a person of colour, while having invisible disabilities, gets you perceived as being violent.

Our education system fails people with disabilities. In high school, I was given a spare in place of physical education. The school, at the time, didn’t have proper supports to support me in physical education. But that meant that I missed a lot of the sexual health education that’s taught.

We know from Statistics Canada that 82 per cent of women with disabilities will be assaulted once in their life in Canada. Sexual violence and education aren't linked at all, but we're missing key information on how to protect ourselves. The more I talk about how I missed out on that education, other people with disabilities tell me that they missed it, too.

When I’m talking about disability justice as a means to tackle forms of oppression, I’m coming at it from an intersectional perspective. The leadership, the people in positions of power, don’t reflect the disability community itself.

Within that, I’m calling attention to the whiteness of the structures that prevent people with disabilities from diverse backgrounds from being able to participate in all facets of education and health care, or result in them being perceived as violent.

BLOOM: You are the founder of the Disability Justice Network of Ontario. What is the purpose of that network?

Sarah Jama: Our vision is to create a world where people with disabilities are free to be. Our mission is to build a just and accessible Ontario where people with disabilities have personal and political agency, can thrive and foster community, and can build the power, capacity and skills needed to hold people, communities and institutions responsible for the spaces that they create.

BLOOM: What needs to change?

Sarah Jama: The problems are structural. The conversations around accessibility today are stuck in the ‘90s. We talk about people needing access so we can expend our economic purchasing power. There aren’t enough conversations around how people with disabilities who move through our education, medical and prison systems have a right to equity in these spaces, and how racialized people with disabilities navigate these spaces differently.

Another structural change that needs to occur is in our provincial and federal budgeting. A lot of funding goes towards children with disabilities. That funding becomes minuscule in adulthood. It’s as though people with disabilities don’t exist in our adulthood—we disappear.

The lack of education created for people with disabilities needs to be addressed. How are we training young people in the history of disability justice? Where do you learn this? I had to do a lot of self-learning about how disability rights came to be.

Systemically, I was taught that when you have a problem, there are systems in place to support you. For example, if you have a problem in school, you go to 'student accessibility services.' But what do you do when that system doesn’t work for you? The conversation around justice and rights is not happening in our education system. 

The important thing for young people with disabilities to know is that you don't have to resign yourself to using the structures in place.

We're the largest minority in the world: we fit every religion, race and geographical location. Someone with a disability who experiences structural issues should understand that not being able to navigate spaces easily is tied to root causes. People with disabilities don’t fit the common understanding of productivity, so we are least likely to have a system in place that fits us, especially if we’re seen as not being able to contribute back.

I was able to push my university to allocate $30,000 to fix elevators that were broken. I also created Maccess, which is an organization run by students with disabilities for students with disabilities. At Maccess, students taught self-advocacy skills and had peer supports in place.

BLOOM: Something I valued in your video was that you talked about the rights of people with all kinds of disabilities—including people with intellectual disabilities and mental illness. I often see people with one type of disability distancing themselves from people with other types.

Sarah Jama: I think it has a lot to do with funding levels. Autism Ontario is funded one way, the Ontario Federation for Cerebral Palsy is funded another, and all of these groups end up competing for support, fracturing community instead of building it.

Disability organizations aren't built to be part of a greater community that collaborates. The way to combat that, 100 per cent, is for everyone to come together and acknowledge that we're part of a larger community that historically has been left out of many parts of society.

We're also part of an ever-growing community. One of the leading causes of disability is old age, so everyone at some point will experience it. The sooner we come together to build a community that fits all people with disabilities, the sooner we’ll have a world that fits everyone.

BLOOM: You talk about how people in our culture confuse the rights of people with disabilities with their value to the economy.

Sarah Jama: I think that’s a faulty and harmful argument. So many people with disabilities can’t work, and do they have the right to exist then, if they can’t contribute? It’s similar to the way seniors are treated. Once they age out of the workforce, they're seen of as disposable.

We see conversations in the public media now about the right to assisted suicide. What about the rights to supports during life? Why does more funding go toward prenatal screening of Down syndrome—and I’m pro-choice—but not toward supports for adults with Down syndrome? The issue lies with institutions  pre-deciding where someone can access support. Who really deserves life, and who has the right to exist?

You have to earn your value, or you’re a burden on society. Couple that with youth with disabilities not knowing about their rights, or that there’s a community of people who have fought for their rights, and by the time they turn 18, depending on their capacity, they struggle with self-esteem, with having community and with understanding their worth. They don’t know that it’s their right to have help and support.

BLOOM: I liked the way you question our culture’s obsession with independence.

Sarah Jama: We’re obsessed with the idea that you’re worth more if you don’t need anybody. It’s a strange cultural phenomenon that doesn’t make sense. No one is truly independent from anyone else.

Mia Mingus has written a lot about interdependency, and how we should be able to go to our communities and find supports, and not see it as a loss of autonomy, but moving toward a larger collective of potential.

For example, nobody tends to be able to survive without going to a grocery store. But that food comes from a farmer. You didn’t package that food and put it in the grocery store. You’re dependent on the structures that are in place, and the community that puts that grocery store in place. We need to teach kids that we all sort of rely on each other, and that’s okay.

BLOOM: I noticed you're working with the Hamilton Wentworth District School Board to create curriculum to address anti-black racism. Is this something we need to work on with staff and families in children’s rehab?

Sarah Jama: Yes, I think so. I’ve created a black youth mentorship program for 40 black youth that meets monthly at Sir John A MacDonald Secondary School in Hamilton to talk about their worth and the way to navigate society and the supports in place for them.

On Feb. 12 we have Robyn Maynard coming to speak with them. She wrote Policing Black Lives, which is an acclaimed book on the history of policing in Canada. We also have Sandy Hudson coming, who is one of the founders of Black Lives Matter in Canada. On Feb. 25, the same youth will be meeting with black elected officials at Queen’s Park to talk about being black and navigating politics.

BLOOM: What advice would you give parents raising kids with a wide variety of disabilities?

Sarah Jama: As much as possible, have conversations around the history of disability in Canada, and how we got to a point where we have a federal piece of legislation. Who are the movers and shakers in our communities? What provincial legislation do we have? What communities have pushed for the rights of people with disabilities to exist equally and freely? It’s important for kids to grow up knowing that there’s a community, because a lot of us internalize our experiences. 

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Green acres is the place for me

By Louise Kinross

In 2014, Maya Wechsler and Greg Masucci made a drastic life change. They moved from a row house off a busy street in Washington, D.C. to a fixer-upper house on 24 acres in Bluemont, Va. They were tired of fighting for a good education for their son Max, now 10, who has autism, and wanted a simpler, safer life for Max and his sister Delilah. It wasn’t part of the initial plan, but since making the move they launched a non-profit called A Farm Less Ordinary, which hires about a dozen adults with intellectual disabilities to grow, harvest and sell organic vegetables and herbs. They hope to expand into producing jams, pickles and pesto. Maya and her husband Greg still work full-time jobs. BLOOM interviewed Maya to learn how the family swings its busy schedule.

BLOOM: I understand your husband was a realtor?

Maya Wechsler: He still is. He’s at a closing right now. I still work too. I telecommute with PricewaterhouseCoopers as a proposal manager.

BLOOM: You both work full-time, in addition to running the farm?

Maya Wechsler: We do work around the clock, but we have a farm manager this year, which makes life a little more livable. She schedules the employees and about 20 volunteers.

BLOOM: Can you describe your son Max?

Maya Wechsler: Max is non-verbal, with autism. He’s always looking for sensory input and needs to be running around outside. He needs full-time care and we have someone to do that while we’re working. The farm is for people like him, but I’m not sure if Max will ever be able to work here. I don’t think he has the attention to detail to be harvesting lettuces.

BLOOM: What does he love?

Maya Wechsler: He loves jumping, screaming, going for walks and hikes in the Blue Ridge Mountain. He loves our animals and we’re thinking of increasing the number of animals we have. He loves music videos and listening to Harry Potter. He’s home-schooled, but not by us.

BLOOM: What was life like when you lived in the city?

Maya Wechsler: We were fighting non-stop with the public school system. We were fighting to get a private placement for Max. A lot of bad things happened, which I’m not going to talk about. We were going to have to fight again to get more funding, and we couldn’t take it anymore. That’s why we decided to move out here.

BLOOM: How did you figure out when your son was so young that you wanted to make such a big life change? I have an adult son who could benefit greatly from your program, but I haven’t done anything so drastic.

Maya Wechsler: When we moved to the country, having a non-profit farm wasn’t part of the plan. We just wanted to get out of the city and away from the traffic and fighting with the school. Then when we got here, we thought what a waste of the land. I have a comfortable history of teaching myself stuff—I taught myself photography and ran a photography business. We had always been doing advocacy for people beyond our son, and were politically active, and we didn’t really feel right about giving all of that up. There are so many teens and adults with intellectual disabilities who have a lot of time on their hands and a desperate desire to work.

BLOOM: How does the farm work?

Maya Wechsler: We grow vegetables and herbs and are working on fruit. We’ve planted some blueberry and strawberry and raspberry plants and our goal is to move to value-added foods like jams and pickles and pesto. We’ll always grow veggies and we have a membership program where we deliver harvest once a week in crop boxes. We also have a contract with a food bank. Today we’re harvesting for a big delivery of fresh produce for low-income people. We also do a farmer’s market and a lot of fundraising, and hope to get more grants.

BLOOM: How many employees do you have?

Maya Wechsler: Twelve. They have intellectual or developmental disabilities or mild mental illness, such as anxiety and obsessive compulsive disorder. We’re not equipped for people with physical disability. Some people can drive themselves here, some people get rides, and one person comes from a group home with his job coach.

BLOOM: Is the work seasonal now?

Maya Wechsler: We operate from mid-March to the end of October. We’re trying to raise money for a true greenhouse so we can grow through the winter and have people come all winter. We have the employees, if we can just get the funding. We run six days a week—Monday through Saturday. When they’re not working here, our growers have nothing to do all day long. They sit around, watch TV and get bored.

BLOOM: What do they get paid?

Maya Wechsler: They start at minimum wage and that progresses, with initiative, up a dollar during the season. If they come back next season they get another dollar raise.

BLOOM: What has been the greatest challenge?

Maya Wechsler: Doing it all while parenting and working day jobs. Your energy really takes a hit. First of all we’re exhausted at the end of the day, but we also have back aches and knee problems, so we’re trying to build this up while we still have the stamina, and then hand it off to someone to manage.

BLOOM: How does it compare to the life you had in the city?

Maya Wechsler: As a family I’d say it’s busier than what we aimed for. But it’s also satisfying because there’s a cycle to the seasons that is pleasant. We literally slow down during the winter, according to the grain cycle. It’s also very satisfying because the kids can be outside freely—we don’t have to worry about them being kidnapped or hit by a bus.

BLOOM: How has it changed you?

Maya Wechsler: I’ve become more self-reliant. These country skills that we scoff at as a city person, you realize how valuable they are. We’ve learned to do a whole lot ourselves—from fixing tractors to canning fruit.

BLOOM: I was surprised that you both work and manage the farm.

Maya Wechsler: Autism costs a lot of money. There’s a lot of therapy, and we can’t afford to home school ourselves. Greg and I don’t even get paid from the farm yet. For anyone considering running a farm like this, at least one person has to work off the farm, especially in the United States, due to our health care system.

This is a fabulous Upworthy video about the family.

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The film 'Deej' upends what you think you know about disability

By Louise Kinross

David James Savarese, known as DJ or Deej, has autism and doesn't speak. As a young child, he was placed in foster care. He was abused there, but couldn't tell anyone. Only after he was adopted by parents who taught him to read and write was he able to share his story, which is the focus of the film Deej, making its Canadian debut this Friday at Toronto's ReelAbilities Film Festival.

"Imagine for a minute," DJ says with a voice device in the film, "that...you are removed from your home for reasons no one bothers to tell you because you can't speak, so they assume you can't hear or think or feel." And later: "To this day, I question my humanness." The film follows DJ through a regular high school and into college, revealing a rich world that he expresses in poetry and as a playwright.

BLOOM: Why did you want to make this film? 

DJ Savarese: I wanted to show the people who said I was incompetent, that I’m not. I wanted to show people that they make wrong assumptions based on people’s appearances all the time. I wanted to show neurodiverse kids that they are needed and worthy of being celebrated.

BLOOM: What technology and support people do you use to communicate?

DJ Savarese: I can use almost any means to communicate: photos, AAC, manual sign language, writing, typing, and even my vocal cords. Because I still intermittently dissociate and lose track of my body, I travel with a support assistant whose physical resistance to my movement makes it easier to locate my hand—and body—in space.

BLOOM: At one point in the film you say 'no assistive device can do' what your mom does. What do you mean?

DJ Savarese: I mean that no assistive device can fill in when a paid support person is sick, or late, or quits, and all I need to do is look at her to remember I deserve respect, and I can handle it myself. 

BLOOM: Just to clarify, is the value of the support person (in addition to providing physical resistance) that he or she is a constant reminder that you're worthy of respect? Is it about the power of seeing yourself through the eyes of people who know you?

DJ Savarese: Yes and yes! I love your notion of seeing myself reflected in the eyes of those who 'get' me—yes.

BLOOM: We learn you suffered severe emotional trauma as a young child in foster care. You say that because you don’t speak, people 'assume you can’t hear or think or feel.' Why is speech associated with being human?

DJ Savarese: I’m not sure. You’d have to ask a neurotypical [person] that question, I think. Maybe it’s because developmental tests make speech a gatekeeping skill that keeps some kids from ever getting the chance to be taught to read and write.

BLOOM: You talk about a mission to “free your people.” Does this refer to non-speaking autistics, or all non-speaking people, or all people with disabilities?

DJ Savarese: I want the film to speak for all nonspeaking people, and I tell my story so kids with trauma and kids in foster care can see life gets better.

It might refer to any of those people, but it also refers to any of us who are not allowed to lead the life we want for ourselves because we are pigeonholed by society.

BLOOM: Your film touched me deeply, because I have a young adult son who doesn’t speak (he doesn’t have autism, but a rare disorder). He is able to read, but he’s never developed a fluid form of communication so he can freely express his thoughts. What can we do to empower people like my son?

DJ Savarese: Keep working with him to increase his fluid communication and explore a variety of ways to communicate. There are examples on Listen2Us of how to move someone who uses single words to sentences and from sentences to paragraphs.

I’m sure no one stops learning as a young adult.

BLOOM: What advice would you give to parents of a child who can’t speak, especially if they have an intellectual disability?

DJ Savarese: Visit my website at Listen2Us, and keep visiting it all summer as I finish it.

Ask yourself how you can possibly know your child has an intellectual disability if you aren’t able to understand what they know.

Try all kinds of communication with them: photographs, words, AAC, sign language.

Read to them a lot and ask them questions using answer banks. New ideas keep us from getting locked in our old ones. 

BLOOM: Do you think we can learn from people who have intellectual disabilities? Is there value to all kinds of neurodiversity?

DJ Savarese: There is value in every person, but I reject the term "intellectually disabled." It's a figment of the ableist's limited—and limiting—imagination.

BLOOM: How does writing poetry help you deal with memories of your childhood abuse?

DJ Savarese: It’s hard to put into words. It just does. If I can write a poem and strike a nerve in my reader, then I might still be sanely sad, but at least I’m safe and not alone.

BLOOM: Who paints the images that accompany your poetry in the film?

DJ Savarese: Em Cooper made the film awesome by offering an alternative to the camera’s outsider’s gawking stare. We collaborated online every week for months.

Here is her biography from the movie’s website:

Em Cooper is a British animation director specializing in combining oil-painted animation with live-action film. Her "striking, impressionistic animation" received critical acclaim across the British press in 2013 with the release of Kiss The Water (dir Eric Steel, BBC Scotland) for “gorgeous animation sequences in Munch-like swirls of colour” (The Observer/The Financial Times). In 2014-15 she created animation for Amazon Prime’s Emmy nominated children’s series Gortimer Gibbon’s Life on Normal Street. Em is a graduate of the Royal College of Art, Sundance Alumna and a winner of both the YCN Professional Award for Animation and the Gradiva Award for Film.

And here is the two of us discussing our collaboration of poetry and oil-paint animation.

BLOOM: Are you still studying creative writing at Oberlin College?

DJ Savarese: I am no longer at Oberlin College, but I am still a writer.

I graduated Phi Beta Kappa from Oberlin College in May 2017 with a double major in Anthropology and Creative Writing. An Autistic Self Advocacy Network (ASAN) Scholar Fellow, I was also the recipient of Oberlin’s William Battrick Poetry Fellowship and their Comfort Starr Award for meritorious scholarly work in Anthropology. My poems and prose have appeared in The Iowa Review, Seneca Review, Prospect, Disability Studies Quarterly, StoneCanoe, Wordgatherings.com, Voices for Diversity and Social Justice: A Literary Education Anthology, and A Doorknob for the Eye (Unrestricted Press). Links to my published work can be found on my website.

BLOOM: What did you learn about yourself at college?

DJ Savarese: I got an amazing education and stayed in my body for long periods of time.

I can teach and I love to teach.

I am synesthetic.

I care what happens to our planet, and its story is in flux all the time.

I assessed myself as able to write myself into a job, which I did.

I’m an artist, but my words are not like yours.

I’m interdependent, I’m not dependent; and people are safe if they’re interdependent.

I assessed myself as smart and made it so.

I love myself as I am.

BLOOM: Something we see in the film is how exhausting it is for you to control your body to fit in with social norms. After you’d been at Oberlin for a while, did you ever feel like you could let your guard down and be freer with your movements?

DJ Savarese: I loved Oberlin a lot, and, yes, once enough people knew who I was and told all of their friends and colleagues, I could move more freely around campus and the town.

BLOOM: Is acceptance an important idea for disabled people—meaning acceptance of their differences and not always working to “fix” or “camouflage” them?

DJ Savarese: I strive not only for acceptance but for appreciation and for need. I’m essential to the people in my life.

BLOOM: You talk about being exposed to gawking strangers. How do you deal with that?

DJ Savarese: I’m not as vulnerable to their stares as I was, but if I’m in my head, it can be sad to see myself in their eyes. I live down to their low expectations then.

But if I’m in my body, I can ask my assistant to talk loudly about my accomplishments and introduce them [the strangers] to a new perspective.

BLOOM: How many of your supports were covered financially by the government—or by Oberlin—and how many did your parents need to pay for privately? For example, I’m thinking of the assistant you had at night.

DJ Savarese: I received assistance from Iowa VR for 58 hours of support assistance for homework and a partial tuition stipend and book stipend from Ohio VR, and Oberlin paid for my support assistant during class time. I also received 35 hours per week of personal care assistance. In exchange for my support from Vocational Rehabilitation (VR), I was required to apply for 3 scholarships annually, which I did and received extra assistance with tuition and room and board that way. While I was on the waiting list for the home-based waiver, I never actually made it above #500; in fact, my position on the waiting list worsened over time.

BLOOM: You note that your mom lived in the town so she could help manage your support team. But you say that 'being included is every kids’ right, it shouldn’t be a lottery.' You obviously hit the jackpot when you were adopted by your loving parents. Did your dad teach disability studies before he adopted you? Or did he go into that after?

DJ Savarese: My dad went into disability studies after he met me but before he adopted me. I think he was in graduate school for English when we first met.

BLOOM: What was it like to watch the film for the first time?

DJ Savarese: I’m not sure if I can say this; I’ve seen it a lot, so it’s hard to remember what it felt like to watch it for the first time. It’s not easy watching yourself on screen. I’m greeting fear most of the time.

BLOOM: What do you hope to do when you graduate?

DJ Savarese: As I mentioned above, I graduated in May 2017. I’m currently working full-time as an Open Society Foundations (OSF)/Human Rights Initiative Youth Fellow. I also just completed Harvard's Kennedy School course on Leadership, Organizing, and Action. I’m working to make literacy-based education, communication, and inclusive lives a reality for all nonspeaking people.

Here’s a link to an online interview with OSF:

I’ll likely get a PhD, but I’m taking time to see what life is like outside of academia, and it’s been a lot of fun so far.

BLOOM: In high school in the film, you talked about writing a book. Are you working on one?

DJ Savarese: I haven’t written a poetry book, but my chapbook, a small paperback book, is A Doorknob for the Eye.

I’ve written my honours theses for Creative Writing and for Anthropology, but neither of them has been published. At some point I hope to publish a lot more. My website has links to most of my published work thus far. I hope to get more writing done this summer, when I take a break from travelling with the film for a while. I love writing, but it’s difficult to fit it in with two full-time jobs.

BLOOM: Can people follow you on social media?

DJ Savarese: I appreciate you asking. I’m not made for social media, but here are some ways you can follow my work:

www.djsavarese.com

www.Listen2Us.net

www.deejmovie.com

https://www.facebook.com/david.j.savarese

https://www.facebook.com/DeejMovie/

https://twitter.com/deejmovie?lang=en

 

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At London's Chickenshed theatre, 'there are no labels'

By Louise Kinross

Chickenshed is a vibrant British theatre company that does professional plays and musicals, high school and university education, children’s programs and outreach in schools, prisons and hospitals. Its current show on climate change—Don’t Stop Thinking About Tomorrow—has a cast of nearly 200. What makes the London company unique is it celebrates diversity. About half of its members have disabilities or are considered vulnerable in some way.

Two years ago, Lou Stein became Chickenshed’s artistic director. Lou is a London-based theatre director who founded the famous Gate Theatre in Notting Hill, and has directed numerous plays in London’s West End and for the BBC. He learned about Chickenshed when his son Ethan, 11, who has Down syndrome, began taking acting workshops there. Lou is married to Deirdre Gribbin, a Northern Irish composer who worked at Holland Bloorview in 2014 to bring sound to ScreenPlay, our interactive waiting room. I met this amazing family then. Lou and I spoke about what inclusion means at Chickenshed.

BLOOM: You say Chickenshed has inclusion at its heart. 

Lou Stein: The centre of our culture and ethos is that there are no labels. In other words, if someone walks through the door, whether an audience member or staff member, everyone works with one another. A significant number of our constituency has additional needs, or some form of intellectual or physical disability. The company tends not to call it disability, because of the word’s perceived negative connotation.

BLOOM: That’s so interesting, because there’s a campaign by North American advocates to get people to use the word ‘disabled.’ They see disability as an inherent part of who they are and something to be proud of. 

Lou Stein: I’d like to read more about that. You won’t see the word disability in any of the Chickenshed brochures, because of our policy of not labelling. As a father of a boy with Down syndrome, I have a somewhat different perspective in relation to using the word. I personally like people seeing the difference. It is part of who my son is. I'm encouraging a debate within Chickenshed about that part of our culture, which I think is healthy.

We have 20 to 30 young people, ranging in age from seven to young adults, who have Down syndrome. We have people with cerebral palsy. Some can get out of their chair, and some have very limited mobility, but they join in our courses and shows. We have all kinds of global disabilities. We have people who are blind or can’t hear well, or not at all. At Christmas, all of our 60-plus shows are signed.

BLOOM: Wow! I read that you had sign-language interpreters at shows, but you’re saying the actors speak and sign at the same time during the performance? 

Lou Stein: Absolutely. The actors in our big shows learn to sign and the audience accepts it. But it would be incorrect to call us a theatre company that works solely with people with disabilities, because the whole point of Chickenshed is that all kinds of people are part of the group. We mean diversity in the widest sense. So we have children who live in foster homes, or who have mental health issues—all types of diverse young people.

I can tell you stories of people who were beat up by their parents, and turfed out in the street, and they worked with us. And on the other side, rich North London Jewish kids who want to work with us. We’ve had black kids from bad neighbourhoods in London, who were subjected to knife crime. It’s that combination that is so exciting.

Although we do have a huge number of disabled people, it’s that kind of mixture of care for one another, in a mixed group, that is Chickenshed’s strength.

BLOOM: How does inclusion make your shows better, or different, than they would be without? 

Lou Stein: The way we work, every individual changes a production. If you were to come and be in a show, the production would change. Whether you’re disabled, black, Puerto Rican, whether you’re a professional or an amateur actor, what we do is use the differences that people bring and celebrate them, rather than making that person into something they’re not.

I come from the professional directing world, and one of the exciting things for me is we have a professional arm with shows that are reviewed professionally, so the quality is judged externally as well as internally.

In our spring production of One Flew Over The Cuckoo’s Nest, one third of the inmates have cognitive difficulties. They’re actors, they’re not playing themselves. So it’s interesting to see the play through their eyes, rather than casting an actor who is pretending to be in a mental institution. They bring a new way of looking at the parts. It’s a completely different thing. They’re able to bring their filter and lens to the art.

BLOOM: It seems like any diversity would add more to a show because it creates more opportunities for different ways of seeing things. 

Lou Stein: That’s the centre of the power. Even in the West End here and in other professional theatres, it’s a big deal when they cast someone with a disability. There’s more and more of it happening now, as if ‘Wow, aren’t we being inclusive?’

What they’re forgetting is what that amazing person brings to the production as a person. It’s important to remember that if Ethan is in a little group doing a scene in the Christmas show, he completely changes the nature of the show, as would your son Ben, or yourself, or anyone.

BLOOM: I’m thinking of the current play Amy and the Orphans in New York, which stars Jamie Brewer, who has Down syndrome. There were lots of stories in the New York Times about how it was the first time a person with Down syndrome had played a lead role. 

Lou Stein: Yes. It’s the same when you see someone with Down syndrome on a catwalk. It’s this idea that you have to be this brilliant, one-off performer. Ethan may not play Othello, or model, but that doesn’t mean he doesn’t bring something to whatever social situation or performance he’s involved with.

There was a lot of controversy here about why they didn’t cast an actor with autism in 'The Curious Incident of the Dog in the Night-Time.' I asked producers behind the production about it. They said they wanted to, but it would take too much time to rehearse them.

I said why didn’t you create the time, because that would have been so brilliant. I can tell you right now that we can do that play, and I have a dozen actors with autism that can do that role. It’s giving people a little time. It’s getting them into the process.

BLOOM: What is the greatest challenge of being inclusive? 

Lou Stein: I think the biggest challenge is keeping myself aware—of not labelling, of not putting limits on people, and actually listening to people. It’s taking the time to listen to what people who are seeing things through different lenses can offer you. It’s leaving your ego at the door. It’s realizing how much all of these people can give you in a production and personally. The most difficult thing is keeping yourself fresh and open. 

I have a story related to my son Ethan. Ethan has Down syndrome. He’s great and he’s confident and smart, but in a social situation with someone he doesn’t know, he can kick out, or he can turn inwardly into himself.

We’re used to people saying ‘Oh, aren’t you lucky that Ethan is around mainstream kids. Isn’t that fantastic?’

One time before I was artistic director, one of the Chickenshed group leaders said ‘I have to tell you something about Ethan. This term there was a child of about 14 who was going through a terrible home situation and was feeling very low. That child was in Ethan’s group. And Ethan demonstrated such empathy and understanding, and made him so happy, that he pulled through.’ That was the first time anyone saw the other side of what Ethan can positively do for other people.

BLOOM: Beautiful. I was surprised to hear that Chickenshed was over 40 years old. Did it always include people with disabilities? 

Lou Stein: Our founder, Mary Ward, was a drama primary school teacher. Her professional partner was a musician, and they started doing Shakespeare in the ‘70s in a shed on a big estate. Someone lent them the shed and they were doing it with the neighbourhood kids.

They put a notice up saying all were welcome, and someone rolled up in a wheelchair. Mary said she thought ‘What do we do now?’ They decided let’s work with this, and that’s the seed of the idea. It’s not that we’re including people, but they’re actually teaching us. That is the cornerstone of the company.

BLOOM: I read that you need to raise about $3.5 million dollars a year to fund Chickenshed. How do you do that?

Lou Stein: We do it through gala performances, sponsors and ticket sales. A lot of the people who come to fundraising galas are people who have been connected with Chickenshed over the years. And quite a few of them are very wealthy people. Our education arm gets government support.

BLOOM: I noticed that you have a program called Young Creators that is free.

Lou Stein: It’s for young people 14 and up who are interested in some aspect of theatre—be it writing or lighting or directing, and they meet with mentors.

BLOOM: How many staff do you have?

Lou Stein: We have 106 people working for us. In April we’re sending a contingent of 15 people to New York to start a Chickenshed in New York City.

BLOOM: I wish you would start a Canadian one. 

Lou Stein: It all depends on a person of influence who can make it happen. Someone who has the connections with the schools and the performing arts centres to do it.

We have an American Friends of Chickenshed branch. One of them came up with a plan and arranged for someone to underwrite 15 of our people to go into New York schools to demonstrate how our processes and performances might work in a New York City context. The hope is that a satellite chicken shed starts up. We train in the process of how we do it, then hand it over.

We also have a Chickenshed in China, where a social worker became interested in us. We went out two years ago to show our processes and do performances, and they started their own shed. What we want to do is let people learn the concepts and processes and give it over to them.

BLOOM: Has anyone done a documentary about how Chickenshed works?

Lou Stein: We’d love to get a broadcaster or filmmaker interested in doing a serious documentary where the person would come and work with us. It’s very hard to describe in one paragraph what we are, because we’re a professional theatre company and a school and we do outreach. In a way, the professional company is our window that gets new people interested in us, and it involves all of our constituents. But telling a story of how all of our parts link together would be brilliant. 

Photo below is of Lou Stein with his son Ethan.

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Finding the music in everyone

By Louise Kinross

The other day I posted a call for story ideas on the BLOOM Facebook page.

Karen Bojti wrote: “Another ‘out of the box’ person I have discovered is Laura Nadine. You can Google her. She’s a professional violinist, a wandering minstrel and music teacher. She is also a woman on the autism spectrum. She is teaching Charlie to play the violin.”

I hopped over to Enlightened Audio, which is Laura’s website, and this sentence jumped out at me: “I teach music to all humans.”

It sounds like common sense, but it’s revolutionary. Many children with disabilities struggle to find a music program they can attend, let alone flourish in.

Laura lives in Buffalo, but she travels to Toronto on weekends to teach here, so she came to visit me.

Laura primarily teaches string instruments, but she also teaches piano and guitar at a beginner level.

“The key ingredient to my teaching approach is presuming competence,” Laura says. “I truly believe every student can learn. We just may need to adjust the method or the way in which the student connects with me. I want to make it clear that I’m not a music therapist. I’m teaching children to acquire the skill of playing the instrument, and when they’re finished, these students are playing core material like everyone else.”

Laura says about 80 per cent of her students have disabilities. Most have autism, but she’s also worked with children with cerebral palsy, Down syndrome and ADHD.

“One of the things I think is flawed in understanding disability is that we think disability is static: when you’re assigned a certain IQ, that’s what it is. We don’t take into consideration the error of the measurement systems, and that kids are fluid. They can grow and learn more. I’ve seen this time and time again with autistic children going from being non-verbal to communicating with a letter board. We’ve got testing models that assume all humans fit into a static model. We really don’t understand the grey area of the spectrum, and the ability to make new [neural] connections to compensate for places where there might be flaws.”

When working with a new student, Laura encourages them to make a sound with the violin. “Their bow hold might not be perfect, but making a sound is rewarding,” she says. “I let the child take the lead. If the child is afraid to touch the instrument, we unpack it and look at it, and I talk about how it only makes sound when the child wants it to make sound.”

For a child with autism who has trouble getting her body to do what her brain wants, she'll take the child’s arm and help her bow up and down.

For some children with autism, touching the violin to their shoulder and resting a chin on it “can feel like lightning shocks going through the body,” Laura says. “The goal is to get it on their shoulder as soon as possible, so they can train their own body to tolerate the input. However, if I have to hold the violin first to get to that step, then I do that. I would face the student and say ‘I know your brain understands what you need to do, but your body needs time to learn.’”

The good news is that “the body and brain have an amazing ability to increase tolerance to input, so people on the spectrum can learn to be a little less sensitive through training and understanding. The more times we do something, the less intense those shocks will feel, until they can independently hold the instrument.”

Laura struggled in school growing up because her autism wasn’t diagnosed. “The hardest thing for me is my nervous system,” she says. “I went to public school in the states, and they had no windows in the classroom and fluorescent, vibrating lights. It was hard to be in this building with all this input. There were bells ringing and kids chewing on pencils. I could even hear the clocks tick and the water fountain pump turn on. I had meltdowns that weren’t physical—where I would shut down and couldn’t speak. It manifested in night terrors. My teachers thought I was sick. I dropped out of high school in Grade 10 and did correspondence school.”

Laura says that during her struggles at school, “music was my island of increased ability.” Within four years she was playing at a professional level, and was asked to tutor other music students after school.

Laura says she may have synesthesia, where “one sense gets confused with another. In my case, my vision has a sound. What I see creates music in my head. When I was in music class at school, I would pick up snippets of sounds throughout the day, then organize them into a song to play on my violin. It was an outlet for stress. I called these songs shadow songs, and one of the first I wrote was called All Alone. I wrote it at age 14. I call them shadow songs because everything has a shadow, but for me, everything has a song.”

It wasn’t until Laura was 27 that she learned she had autism. “My second child Jacob was doing some odd things that reminded me of myself,” she recalls. “He had to have things organized in a very special way, and he wasn’t speaking fully until right before he went to kindergarten. I took him to the doctor and he gave us the diagnosis of autism spectrum disorder. Then, while talking to me about Jacob, he handed me some literature about adults on the spectrum. I guess I was obvious.”

Laura says getting the diagnosis was freeing. “It was like someone wiped the fog off my vision. The diagnosis is a toolbox, not a label. It told me what set of tools I needed to adapt to succeed in the world, not just survive. Nobody wants to just survive. People want to have a quality of life and I knew I wanted to be more.”

She went to college to study psychology and education. “With a diagnosis, I was able to ask for help with note-takers and extended time on tests, and I went from being a failing student to having a high GPA.” Laura says she wanted to understand better how her mind worked. “I felt many of the interventions for autism were obedience-based, not development-based, and I wanted to understand more so I could do more.”

Laura says what she’s learned from her students is that “there’s always a way, even when it feels like we’re pressed up against a wall and not making any progress. I’ll wait for the student to shine a light on something else that ends up working for us. That’s part of being student-led. I’m not trying to fix the student. I’m teaching them to navigate through their disability.”

Laura receives lots of positive feedback from her students and their teachers. “One girl who uses a letter board told me that music changed her life, and was a new way for her to communicate her inner thoughts.”

Laura hopes to move to Toronto in the New Year and become a Canadian citizen. “When I came to Toronto, it was the first time ever that I felt like I was at home. The community here is so warm and embraces unique perspectives. I can’t wait to be a part of that society on a daily basis.”

Laura has a book: I am Snamuh: My Journey with Autism and the Power it Gave Me. She also has a few signed copies for anyone interested.

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In Paul's class, 'a friend is a friend, regardless of... abilities'

By Louise Kinross

Paul Alcamo is a veteran at Holland Bloorview. He joined the hospital in 1987 as a recreation therapist and later became a teacher in our school. Almost 20 years ago he helped found our reverse-integration kindergarten, which invites able-bodied children to attend our school for children with disabilities.

The two-year program is a partnership between Holland Bloorview and the Dr. Eric Jackman Institute of Child Study at the University of Toronto. It promotes inclusion by educating kids about disability and adapting all activities. Typical children are immersed in the disability world, enabling them to gain a deep understanding of diversity, while the children with disabilities develop confidence in voicing their needs. In recent years the school has struggled to attract children who don’t have disabilities. BLOOM talked to Paul about his life's passion.

BLOOM: Why did you choose the field of children’s rehab?

Paul Alcamo: I worked in a program at North York Parks and Rec with kids with a range of abilities, and that spawned my thought of this as a career. I liked these kids and thought it was a natural bond and connection that I wanted to continue. I’ve always enjoyed the interaction and meeting the challenge, together with the children, to help them learn and grow.

BLOOM: What is the integrated kindergarten?

Paul Alcamo: It’s a classroom first and foremost that tries to give children as rich and joyful a learning experience as we can. The overriding philosophy is that a friend can be a friend, regardless of their abilities. We embrace all of the important things that are wonderful about Ontario’s curriculum—enquiry and discovery and taking joy in learning and sharing that with your friends. We have to make sure we differentiate it so we can accommodate the different abilities in our class. We have a healthy combination of direct teaching and situations where children are encouraged to pursue their questions or ideas about big issues.

BLOOM: I know you have amazing themes where you transform the classroom?

Paul Alcamo: I’ve always felt that in order to develop your understanding of a topic you have to practise it in an active way. With our pretend centre we’ve created a whole dig site where the kids become paleontologists extracting dinosaur bones. Then they go to the museum to clean the bones and put them into the shape of the dinosaur, and then describe the dinosaur. We’ve turned the pretend centre into a coral reef, a rainforest and a den where bears can hibernate.

Last year on a walk outside the kids saw these bugs crawling under a rotting log, and they asked: ‘What’s going on there?’ So we created the framework of the rotting log in the pretend centre and the kids dressed up as wood lice and bess beetles. They re-enacted how a bess beetle chews up wood that is partially broken down by fungus, and poops it out and feeds it to its larvae. The information that they develop and practise through play really stays with them, and they go home and tell their families about it.

BLOOM: You do a lot of teaching about friendship.

Paul Alcamo: We talk a lot about abilities and who’s the same and who’s different. We embrace the idea that caring, sharing, including and encouraging are four things that are really important to friendship. The kids come in and report if they saw someone doing any of these four things, which keeps them mindful of how others behave. They have a language. For example, you’ll hear: ‘That’s not a very encouraging thing to say.’ Or ‘You’re not including him properly.’ This is a philosophy that you have to imbue and work at.

BLOOM: What kind of changes do you see in the kids?

Paul Alcamo: The kids who come in and are getting therapy? I see them realize that they have to be outgoing in order to make friends. And that if you stay quiet and still, and don’t advocate for yourself, you run the risk of being left alone because you’re giving that signal that you want to be by yourself. ‘Do you want to be by yourself? If not, go ask someone to play with you.’

With both groups we make them understand there are ways to figure out how to play together. Sometimes that means changing the equipment or the jobs you do in the game, or where the game is played, or your boundaries or your timing.

We have to be very explicit with the kids about what they’ll do if they use a walker or a power wheelchair or run on their legs. We don’t just tell them it would be ‘nice’ to consider their friends’ needs.

With tag, we change the roles so everyone is working hard, but at their level of ability. So if you’re using a walker or wheelchair you can hold on to a long Styrofoam pool noodle and go forward. Even though you can’t move as fast, the longer noodles give you extra reach to tag kids. But if you run on your legs, you have to run backwards to tag people. So you’re still working hard, but we’re slowing you down.

For kids who are reticent about being ‘it,’ we came up with the idea of Captain Invincible. This is the person who’s allowed to unfreeze people when they’re frozen. It’s a powerful role, but you can go at your own speed.

BLOOM : What changes do you see in the other kids?

Paul Alcamo: Sometimes at the beginning of the year, they’ll refer to another child by their equipment name. So they may refer to ‘the wheelchairs.’ By the end of the year, they’re just using their friends’ names. They have an understanding of what their friend needs to do this or that, and they’re not upset about adaptations. It’s a matter of ‘these are my friends, we play together, this is how my world works, and this is natural.’

BLOOM: What’s the greatest challenge?

Paul Alcamo: Just making sure you stay on top—that your accommodations are in place, you have differentiation in your lessons so everyone has what they need to learn, and you’re conscientious about reinforcing that we’re all friends and we all have to find a way to play.

BLOOM: In the past you had more kids without disabilities, but you mentioned enrollment has declined in recent years.

Paul Alcamo: It’s a sad occurrence. I think there may be a number of factors. These days most families send both parents to work, whereas when we began the program there were a lot of stay-at-home moms. Also, we used to be the only full-day kindergarten, but we don’t have that niche anymore.

The families who do come are very committed to the idea of learning about the world of their classmates with disabilities and how to include and adapt and see their friend as a friend. We have families who come back to meet every year on the last day of Centreville for a reunion. We’re still accepting families through the Institute of Child Study until January of next year if anyone is interested.

BLOOM: Have your thoughts about disability changed?

Paul Alcamo: I’ve always had the belief that first and foremost these are children. Honestly, as I’ve gotten older and become a parent, you reflect on these things and it hits you a bit more. If anything, it’s made me someone who is even more emotionally committed to these kids. My attachment to these kids goes even deeper.

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A new way of teaching health students about genetic conditions

FRAME is a series of videos on children with genetic conditions and their families talking about their lives in general and from a medical standpoint. 

They were developed by Positive Exposure as a way to educate health professionals on conditions like Marfan and Down syndrome in a way that promotes the beauty and humanity of the participants. 

The goal is to get away from the "patient as a specimen" model of medical literature.

Positive Exposure is looking for health professionals and families to view the videos and give them feedback.

After viewing the videos, health professionals are asked to fill out this survey.

Families, people with the conditions and others in the community are encouraged to fill out this survey. 

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This educator's ties to Bloorview span three generations

By Louise Kinross

Debbie Sutherland’s connection with Holland Bloorview goes back three generations. Her grandmother Beatrice worked as a cook at the original Home for Incurable Children. Her mother June developed polio as a toddler and had her braces made at the Hugh MacMillan Rehab Centre. Debbie has worked as an educational assistant in the Bloorview school for 11 years. BLOOM talked to Debbie about her work here, her family’s connection to the hospital and a community respite program she’s developed with Bloorview School teacher Shelley Neal.

BLOOM: What’s a typical work day for you?

Debbie Sutherland: It starts with getting kids off the busses. It’s a good way to greet them and say good morning and ask how their night or weekend was. Then we do mobility. So we get the kids on bikes or in their walkers and they go all over the school and centre. On Tuesdays I do bussing and 80 minutes of mobility, so I’m walking for 120 minutes. I gave up my gym membership!

BLOOM: Are you in one class?

Debbie Sutherland: I’m in the library this year. In the past, I’ve worked in integrated education and therapy classes, the autism class, the integrated kindergarten and the class for children with complex needs. In the library I now work with all of the kids from junior kindergarten to Grade 12.

BLOOM: What are some of the things you do in the library?

Debbie Sutherland: I check the books in and out and assist the librarian with the classes. We have eight classes of little kids once a week and the older kids come twice a week. With the younger students we work in groups with a white board. So we may download a book onto the board and read a story and get the kids to interact with it by touching the board or hitting a switch. With the older students we’re teaching them how to do research and use Google and the Internet safely. They may be choosing books for projects.

BLOOM: Had you heard about Holland Bloorview through your grandmother’s work here?

Debbie Sutherland: When I was really little my grandmother said she worked at the hospital with the kids who are crippled, like my mom. That’s the term they used then. My mom had polio at 28 months and is now the oldest surviving polio victim in Canada. My grandmother was one of the original marching mothers of the March of Dimes. They used to put something sticky down on the street and people would come and stick dimes on it. She worked at Bloorview for at least 20 years. She was an amazing cook and the people there loved her. She said the kids were like my mom—they couldn’t get around very well or their parents had left them so they had to live there.

BLOOM: How was your mom affected by polio?

Debbie Sutherland: Her right leg is paralyzed and her left arm. She’s now in a wheelchair, but until I was 14 she walked. She had a really bad limp. I remember being teased at school about how my mother walked and how embarrassing it was. My mother told me that when she first started school the other kids would push her down to watch her struggle to get up. She had iron braces on her arm and leg. In the cold, her braces used to snap. One of the doctors told my grandmother that she should go to a special school, so she went to the Wellesley school, which later became Sunnyview.

BLOOM: Did your mom talk to you about disability?

Debbie Sutherland: She talked about having polio. We lived in a side split that wasn’t accessible so she had to go up and down the stairs every day. I remember the first time someone said ‘Your mom is disabled’ it was a shock. I said ‘What do you mean?’ It was always just a part of our life. My mom is the second oldest of seven and when she was young she wanted to ride a bike. The doctor said ‘You can’t.’ So she told her stepfather and he took the brace off her leg and put it in the cement foundation of our house. Then my mom learned to ride a bike and she got around everywhere on this bike.

BLOOM: Did she have a lot of medical interventions?

Debbie Sutherland: They did a lot of experimental surgery on her back. They’d say ‘Wow, that kid is really tough. She made it through and she’s the first one.’ She had humungous scars down her spine and across her knee.

The doctors loved to use her as a teaching tool because they almost never saw polio victims. So it was never just one doctor, but a doctor and a whole bunch of interns watching her. I remember sitting in the waiting room when my mom got her first wheelchair. The doctor told the group that my mother could never have children because her muscles couldn’t hold a pregnancy. She said: ‘You might have wanted to tell me that because the youngest of my five is in the waiting room.’ The doctors were always amazed that she had survived because most kids with polio back then didn’t.

BLOOM: How did you first work in our school?

Debbie Sutherland: I came on a placement to Bloorview at the Leslie site. And when I walked into the school I thought ‘Oh my gosh, this is where I need to be.’

BLOOM: What was your first position?
Debbie Sutherland: I was an EA in a junior kindergarten IET class, so it was the kids’ first experience at school. I loved the kids.

BLOOM: What was most challenging?

Debbie Sutherland: The crying. JK kids cry a lot and for a long time. I think that’s particularly true for kids with disabilities who’ve been sheltered or they’ve been with their parents from day one and never separated. It made me recognize that these parents really needed a break.

Three years ago Shelley Neal and I started a respite program that runs out of our church. It’s four hours of free respite once a month and we take babies to age 13. It’s called rEcess.

BLOOM: How does it work?

Debbie Sutherland: It’s volunteer-driven. We have doctors and nurses and therapists and EAs and teachers and our church youth are involved. We have 67 volunteers currently, and 44 kids registered, with 15 families on a waiting list. It runs on Saturday night. We feed the volunteers and talk about what’s going to happen that night, who the kids are, and they read about the kid they’ll work with. Parents show up at 5:30. We take all of their kids, including the siblings, so the parents get true respite.

The idea is that the parents go out on a date. We want to know where they’re going and make them accountable. The parents are starting to form little groups who go out for dinner together and talk. They’re forming their own community.

BLOOM: Where is the respite held?

Debbie Sutherland: Kingsway Baptist Church in Etobicoke.

BLOOM: What do the kids do?

Debbie Sutherland: We run a full program with stations. There’s a big-muscle adventure, we have a GeoTrax train set that covers the entire floor and is remote controlled. We run an art therapy program, puzzles, games, sensory activities. We change all the kids, put them in PJs to watch a movie so they’re tired and ready for bed by the time their parents come at 9:30. We have all kinds of adapted seating.

BLOOM: What are your hopes for the program in the future?

Debbie Sutherland: We have a big vision. We want to build a complete, full-service respite centre, so that instead of running respite once a month, we can do it every week. The parents will never, ever be charged.

I’m going to school one night a week at the York Entrepreneurial Development Institute to learn how to register our program as a non-profit and make it sustainable. The professors love our program. rEcess has been chosen to be the group project every week and our business model is just about done. We own the property beside the church and we’d like to take down an old, inaccessible house there and build a four-storey building that would house our complete respite centre, including an overnight component.

The professors at York suggested we should rent the second floor out to occupational therapists, physios and doctors at below market rent in exchange for them providing some free services for kids who can’t afford it. Their rent would make the program sustainable.

BLOOM: How do you manage to juggle your work here and your family and the respite program and school?

Debbie Sutherland: Sleep is highly overrated! I work at Bloorview, I tutor once a week and do respite twice a week and I do rEcess. I surround myself with amazing people, like Shelley Neal and Peter Rumney. Peter volunteers almost every time recess runs. He's our medical contact.

BLOOM: What do you get out of your work with kids here and in the respite program?

Debbie Sutherland: This is my niche in life, this is where I love to be. I adore the kids. They wouldn’t have to pay me to do this job. In my work with rEcess I get to see the light come out in other people. I get to empower people to be leaders and to understand awareness and inclusion.

BLOOM: I understand you’re trying to expand the respite program?

Debbie Sutherland: We’re looking for another 40 volunteers to run a second night. We could use nurses and doctors and anyone who wants to volunteer—even if it’s just once a year. We’re also looking or people to sit on our board.

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