Thursday, June 13, 2019

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?

Tuesday, June 11, 2019

Why do so many parents feel inadequate?

By Louise Kinross

When I first saw the title of Ann Douglas's new book, Happy Parents, Happy Kids, I was a bit skeptical. I wasn't sure if it was too simple a premise to apply to the unique challenges of parenting kids with disabilities or chronic health problems.

But in Happy Parents, Happy Kids, Ann argues that many of the pressures facing parents today can't be relieved one family at a time. That's why broad changes are needed at a cultural and policy level to create the kind of wrap-around supports that enable all parents and children to thrive. We talked about why so many parents today feel so inadequate, no matter what they do.

BLOOM: In 2015 we spoke about your book Parenting Through The Storm—which focused on parents raising children with neurodevelopmental disabilities and mental health issues. What inspired you to write another book?

Ann Douglas:
I thought a lot of the messages conveyed in Parenting Through The Storm needed to land with a broader audience of every parent. It’s not just parents of kids who are struggling who need to think about self-compassion, self-care and community. Every parent is at risk of feeling isolated and burnt out and self-critical. 

BLOOM: What kind of parents did you interview in your new book?

Ann Douglas:
I tried to go for a diverse group of parents. I have people from every kind of income level, and different situations, family structures and challenges. The book includes insights from the parents of a child who is living with a rare disorder that makes the future a wildcard. It includes the story of a mom who is living with stage four cancer. And it features comments from a mom who is juggling five part-time jobs, and who is completely fed up with pat answers and simple solutions.

I deliberately asked the technical reviewers of the book to look at inclusiveness and equity. For example, at one point in the book I’d written about doing batch cooking on the weekend, and one of the tech reviewers pointed out “If you can barely afford the groceries for one meal, you can’t afford to do batch cooking.’ I wanted to make sure we weren’t just talking about people in traditional, predictable 9 to 5 jobs, when the new normal for many families is contract and more precarious work. 

BLOOM: I heard you speak recently, and you said many parents who were really interested in the idea for your new book then declined to be interviewed for it. Did that surprise you?

Ann Douglas:
It did, because I’ve been writing about parenting for a long time, and I’d never felt that level of fear, particularly here in Canada. It seemed that all parents had a sense that they were parenting wrong. There was a lot of worry about judgment from others. They felt they might not be the best parent to be interviewed about this stuff. There’s been a lot of anxiety happening in the broader parenting culture. Parents are anxious about the world they’re raising kids in today, and what it’s going to be like when their kids are old enough to establish their own lives. They’re anxious about so many things.

Locally, in Ontario, we’ve seen parents speaking out about the changes to autism services, and the cuts to education funding. And it's not just parents of children who are directly affected who are feeling this anxiety. Parents worry that the same thing could happen to a program that affects their child, or perhaps to a more universal program that’s available to all families.

Parents feel like they’re being asked to shoulder so much responsibility, and they’re worried that the rules of the game have changed. Maybe you can’t get the job that allows you to pay the bills. Maybe you’re piecing together a whole bunch of precarious and unpredictable jobs and wages.

Parents are thinking ‘I can hardly do this now, what happens if things get worse?’ Anxiety is a perfectly logical reaction to the state of the world today, and we need to stop blaming parents for being so anxious, and give them less to be anxious about. We all need to link arms and say ‘It’s not right that anyone is losing out on what their child needs to thrive.’ 

BLOOM: What other factors make parenting feel particularly hard these days?

Ann Douglas:
In order to pay the bills, in most families you need to have both parents working full-time, and a lack of work-life balance is a huge issue.

A lot of research shows it’s at the heart of what makes parents feel guilty and inadequate on a personal level. Parents think if they just try harder, they could figure out a way to have the energy to be working full time, and at the same time to be parenting to an increasingly high standard. People feel massively overloaded and guilty. A parent named Elaine in my book said it doesn’t matter where she is, or who she’s with, she feels she’s letting someone down at work or home. 

BLOOM: What in your new book will resonate with parents of children with disabilities?

Ann Douglas:
I think what’s different about this book is that it’s a much more political book. Parenting Through The Storm was rooted in personal stories and what you can do at an individual family level, and the need to have peer support and community. The new book is about grabbing your community and your picket signs and demanding a better world for kids and parents. 

BLOOM: So the problems we’re facing aren’t ones we can necessarily solve alone?

Ann Douglas:
No. One of the parents I interview in the new book said systemic problems require systemic solutions. Otherwise, we feel it’s an individual failing when we can’t make it all work. But how can we make it all work?

How can we solve problems like climate change or create universal child care in our spare time? Then, when a parent is dealing with something extra, like a child’s disability, you can turn up the dial by 10,000 per cent. 

BLOOM: You talk about the importance of parents remaining calm.

Ann Douglas:
First, it’s important for our own parenting. Unless you can hit the pause button and consider what’s working, or not working, with your child, you can’t pivot and figure out the best way to move forward. It’s also important to provide an atmosphere where kids feel reassured that as parents we’ve got it—we’re going to take care of them, and they don’t have to worry about parenting us.

I’m someone who has to work really hard at staying calm. It’s not my natural state, and I recognize that a lot of people are wired this way. We should probably say it’s important to stay 'calmer,' not calm, even if it’s just at the start or the end of the day. We don’t need to be intensively doing meditation for hours on end! That’s never been the reality of my life, and it won’t be for most people. 

BLOOM: How can we be calm when we’re dealing with the uncertainty of a child with chronic illness or complex problems?

Ann Douglas:
One thing you can do is find a safe person who can help you to carry the emotional load. There’s an awful lot of administrative work and letter writing when your child is struggling. The next time your child is suspended, maybe you can get a friend to write that letter to the school. Every letter doesn’t have to be written by the parent. Maybe another caring family member or a friend could write it. Maybe instead of feeling that you have to read all of these websites to find out what your child qualifies for, you can tap into a pool of people who’ve already done that reading, so you don’t have to start from scratch. 

BLOOM: So a group online for parents of kids with disabilities?

Ann Douglas:
Yes. We’re also talking more in society now about the idea of being an ally to somebody. So who do I know in my circle who might be good at writing letters? Who is a chatterbox and would love to make a bunch of phone calls to ask questions of service providers? 

Over the weekend I received a message from a friend asking me to write a letter to encourage politicians in a nearby small town to reconsider their longstanding policy of never flying the pride flag. I was so happy he made that ask. I spent half an hour writing a letter I was proud of
—a letter that talked about how important it is for every citizen of, and visitor to, that small town to feel welcome and included. Too often, we have a misguided notion that it’s wrong to ask other people for a favour, and we forget the times we’ve been able to do someone a favour, and how great it feels. 

BLOOM: One of your chapters is about guilt. I know parents of kids who are born with disabilities may feel guilty because we couldn’t prevent our child from having extra challenges.

Ann Douglas:
We need to look at the difference between situations that are, or aren’t, within our control, and be clear where these things fall. In most cases, none of us would consciously choose to make life harder for our kids. With genetics and the environment it’s a bit of the spin of the roulette wheel for all of us.

We also need to think about guilt in terms of the expectations we place on ourselves. I often hear from parents of kids with special needs who feel they’re doing it wrong, because they’re exhausted, or not joyous or endlessly positive. When you’re burning out, how can you feel joyful and energized? We have to be realistic, and not add an additional layer of ‘I have to be endlessly positive’ on top of what is already a massive and unsustainable load. 

BLOOM: I’ve found the messages from Kristin Neff’s books on self-compassion helpful.

Ann Douglas:
The biggest thing I’ve taken from her work is to reframe what we tell ourselves by asking ‘Would I say this to a friend?' If a friend told me ‘I’m the worst parent in the world,’ what would I say? Then try to say those kind things you would tell a friend to yourself. 

BLOOM: You argue that parents and kids need a village of support around them. Sometimes it's hard for parents of kids with disabilities to find that support, or build it.

Ann Douglas:
At a lot of my presentations, parents are telling me that they feel isolated and cut off. Given that so many of us are massively overloaded with work and other commitments, it’s not surprising. But sometimes people get this idea that to have a village you have to have 40 people around you. The village could be two to three people. It doesn’t have to be huge to be strong.

Saturday, June 8, 2019

Busy engineer finds happiness in children's hospital

By Louise Kinross

Emile Benyamin is an engineer who spends his days taking care of robots. His robots extract DNA from human blood and saliva, so it can be studied in research and clinical labs in hospitals. Emile travels across Canada to train scientists on the robots, and troubleshoot when there are problems.

But when BLOOM interviewed Emile, he had come in to Holland Bloorview on a Thursday night to volunteer with young children in our Ronald McDonald Playroom. “Emile is always down at the level of the kids, right in the thick of it all,” says Daniel Scott, who coordinates the playroom. “He’s very eager and hands-on with building or imaginative play.”

Emile's presence meant that the children’s parents could attend a talk about getting their kids, who have disabilities, involved in sports.

On Saturday mornings, Emile, whose three children are grown, drives in to the hospital from Richmond Hill to volunteer with inpatients with the most complex medical problems. Many, like Krystal above, use ventilators to breathe. Last Christmas Emile dressed up as Santa Claus on the unit. We spoke about why he’s so committed.

BLOOM: How did you hear about Holland Bloorview?

Emile Benyamin:
I work in hospitals—even Sunnybrook is one of our customers. I love kids in general and I always wanted to come here to volunteer. I do a lot of work for SickKids hospital. When I applied to volunteer here, I had to get two references, and one was from a PhD I work with at SickKids. I’ve been working at SickKids for more than 10 years, and they know me well. When I joined here, I was so impressed with the hospital and the services for the children. That’s why I love it so much, and I wanted to give more.

BLOOM: What is a typical shift here like for you?

Emile Benyamin:
 My main shift is Saturday morning from 9:25 to 11:45 on the complex continuing care unit. We have a supervisor who runs a program—like art or cooking—and we usually work one on one with the children. Some are able to participate and others aren’t. But we still work with them, and hold their hands. Some of them we don’t know if they feel or hear us, while others hear and understand. If there isn’t a program, we may sit with a child at the bedside and read.

BLOOM: What’s the greatest challenge of the work?

Emile Benyamin:
My focus is on how to make the children happy, how to comfort them, and most importantly, making sure they are safe.

Even though they are not speaking they are communicating a lot. They may smile. When one child is not comfortable, she will shake her head. We know something is bothering her—maybe she needs [her airway] suctioned, or she wants us to change the song we’re playing.

BLOOM: So you learn how to read their communication. You’re a very busy person. How do you make time to volunteer here?

Emile Benyamin:
I don’t go to movies. This work is fun for me. 
Put me somewhere where I can play with kids. It’s my relief. It takes away all of the stress and hassle of thinking about work and problems.

BLOOM: What’s the greatest joy?

Emile Benyamin:
I love the kids so much that I find myself very happy being with them. Because the children are weak or sick, I feel good about doing something good for them. I'm always excited to work with them.

BLOOM: I know this place can be like a ghost town on the weekend. How do the children on the unit benefit from people like you coming in?

Emile Benyamin:
In my opinion, we do a very good program, and the program drives us. I’m just a part of it.

BLOOM: How did you get so committed to volunteering in the first place?

Emile Benyamin:
I volunteer with a seniors’ home close to my house in Richmond Hill. I’ve been doing that for 10 years. I have so many friends there. I had one client who was a very good friend of mine who passed away last year. She was 96 and she had a very sharp memory. She would ask me to sit, so she could tell me stories from when she was four years old. It’s heartbreaking sometimes when I go and I don’t find someone I’ve been seeing for years.

BLOOM: Has anything surprised you about your work at Holland Bloorview?

Emile Benyamin
: Yes. The staff are very well trained and they respect the kids so much. They really care about them.

For example, sometimes we do reading, and one boy’s eyes are usually closed. I was taught to put the book mark exactly where I stop, so that when the next person goes to read, they know where to start. I see a lot of respect in this. I’m trying to learn from the staff.

BLOOM: You mentioned that most of the volunteers are students.

Emile Benyamin:
Yes. I’m the only old guy there. I love to see people of a young age volunteering. The community needs it and the children need it. When we have a new, young volunteer, I keep an eye on them, too.

Emile and Emma at work making chocolate chip cookies that fill the room with fragrance.

Friday, June 7, 2019

'Kindness matters...that is what good care is'

By Louise Kinross

Karen Ward has worked with children with disabilities for over 30 years. I met her 22 years ago, when my son attended a Scarborough nursery school run by Easter Seals (the program is now run by Holland Bloorview). Karen explained how the integrated, play-based program worked. She was so warm and kind and upbeat. Karen hasn’t changed a bit, but she now manages many clinical programs at Holland Bloorview, with a focus on work in the community. We talked about the joys and challenges.

BLOOM: How did you get into this field?

Karen Ward:
I took a bachelor of applied science in child psychology at Guelph University. Do you remember Robert Munsch?

BLOOM: The children’s book author/illustrator?

Karen Ward:
Yes. He was one of my professors. He was fabulous in how he engaged students to engage young children. He was someone who made me understand the importance of early learning and that I wanted to be a part of it. My first role after school was running a daycare program for children with special needs at Variety Village. It was run by Easter Seals, but located at Variety Village.

BLOOM: And later the nursery schools in the community that were run by Easter Seals became Holland Bloorview programs.

Karen Ward:
Yes, in 2003 Joan Ferguson and Sheila Jarvis could see that the children we served in the Easter Seals programs were followed here, and there would be better alignment to have the programs run by Holland Bloorview.

The nursery schools were aligned with participation and inclusion, because they were community programs. I’ve always been interested in community-based education. Whether we have early childhood educators doing play-based intervention with families in their homes, or specialized teams who go into Toronto day cares to provide therapy or help adapt a program, or therapists who support clients who use communication and writing aids at home and in schools.

BLOOM: Why were you interested in children?

Karen Ward:
I came from a really large family where there was a lot of family involvement. I think I saw the amazing potential in young kids. I saw they were this wonderful canvas for what could be, and I wanted to be a part of that.

I remember going for my first job interviews and they were to work with typically developing kids. I thought that might be interesting. But then this opportunity at Variety Village came up and I thought it would mean a huge amount of learning for me. I was fascinated by it.

BLOOM: Was that your first exposure to disability?

Karen Ward
: No. When I was in my teen years I was a swimming instructor and a lifeguard and I had taught children with disabilities before.

BLOOM: What is a typical day like here?

Karen Ward:
You’ve got to be kidding! I’m constantly changing hats. I may get calls from any one of the programs to help them troubleshoot, when we need to make adaptations.

I have amazing teams that run exceptional programs, and I’m honoured to work with them. A typical day is always trying to improve the quality of what we’re doing. One of the big things we’re doing right now is building community capacity.

A lot of my role is making sure I understand politically where we’re going, and who are the internal and external partners we need to be constantly dealing with to push that forward. Now we’ve become part of ambulatory services, we’ve really broadened our scope.

I think early learning, especially, is being recognized as an important enhancement to a lot of programs. For example, when a child under age five comes into our spina bifida clinic, they will see an infant development worker who will help link the parents to supports in the community.

Or if we have a young inpatient here about to be discharged, we will give them information about local services, whether that’s in Toronto or Thunder Bay. People are asking our staff to share their expertise, whether it’s in creating play-based therapies for kids with autism, or making sure literacy and communication are embedded in school curriculums for our clients.

BLOOM: What is the greatest challenge of your job?

Karen Ward:
Making sure that we clearly hear what our clients and families need. They drive our programs of excellence. They make us think differently. They’re at the core of everything we do.

BLOOM: What’s an example?

Karen Ward:
Well, we’ve looked at revisions to the referral criteria for communication and writing aids. Based on the organization's No Boundaries strategic plan and client and community feedback, we worked diligently to streamline the process. We made it more user-friendly, understandable and easier to access. We talked to families, reflected on best practices and what other agencies are doing, and adapted the criteria.

BLOOM: What's the greatest joy?

Karen Ward:
Talking to the parents. No question. Staying connected with the parents over time. I’m known so many clients since they were two or three years old. They’re the ones who have made me change. I’m fascinated by clients and families, and I listen to them.

Then there are the frontline clinicians. I’m in awe of what they do and so respectful of it. I don’t want to be their leader, I want to be their partner. I’m so pleased when we, as a team, make a quality improvement and everybody sees the benefit of it. I’m a real hands-on leader.

BLOOM: What other qualities do you need to be good in your job?

Karen Ward:
You need a tremendous level of awareness and of kindness. You need to figure out how to manage people. You may need to make decisions that don’t always have the full support of everyone. However, you acknowledge that concern, and ask that we all just give it a try. We need to keep trying, and to have a vision of what can be better, even though we might stumble along the way. I’m always telling staff that if something doesn’t work, we will work to make it right.

BLOOM: What emotions come with the job?

Karen Ward:
Tremendous joy, because I absolutely want to be working here. I do have concern about the future of some of our services for our families, based on municipal and provincial politics. I do worry about how some of our families will access some programs. I do get frustrated that we can’t do more, or there isn’t enough time in the day. I’m often concerned about the wellbeing of the staff. They give 150 per cent, and I’m always trying to keep their health and wellbeing in check. I care very much for them.

I love the busyness of my work. I love that it’s never the same day.

BLOOM: Is there anything you do to manage stress?

Karen Ward:
I really love walking. I walk on the boardwalk at the beach. And I have a couple of really good friends, and sisters, that I make sure that I see and spend time with.

BLOOM: If you could change one thing about children’s rehab, what would it be?

Karen Ward:
I think we need to broaden what we do. We’re trying really hard to expand our hours and the diversity of groups that we offer. Our families have such a hard time when our hours are rigid. 

The other thing I think is key to success, and which we haven’t done as well as we could, is to infiltrate the community. We need so much more of our rehab services in core community groups—in camps, sports programs, library programs. We need so much more of us 'out there,' instead of 'in here.' We need to broaden our arms. If we keep rehab within four walls, it will never be as inclusive as we need it to be.

BLOOM: If you could give yourself advice on your first day, from where you sit now, what would it be?

Karen Ward:
Kindness matters so much. I think we need to remember to be kind to everyone—families, staff, each other. That is what good care is.

Because my background is in education, people used to say I’m not a clinician, so how can I manage clinicians? You don’t have to be clinical, you have to have solid core values. Kindness and honesty are two values that are very important to me. I’m very good at acknowledging I don’t know everything. When I need to know about speech, I go to an SLP. If I need to know about occupational therapy, I go to an OT. As a leader, you need to be able to pull from different people to figure things out. Together, we can build remarkable teams and programs for everyone.

Friday, May 31, 2019

Friday bonus watch

This short film about living with a dad who has cerebral palsy, uses a wheelchair, and communicates with a pointer and letterboard, is now available on YouTube. My Dad Matthew is seen through the eyes of Elijah, who was then 14, and considers his father Matthew “a pretty normal dad.” 

Want to hear directly from Matthew, who's a professor in disability studies at Northern Arizona University? Read our interview with him. Happy Friday!

Tuesday, May 28, 2019

How to keep in touch

Do you want to read and watch family stories about parenting children with disabilities? And hear about what it's like to work in children's rehab? Plus get links to mainstream disability news and opinion pieces?  

In addition to checking the blog, you can follow BLOOM on Facebook.

Sign up to receive our monthly e-letter in your inbox (includes shout-outs to people and groups making the world a more inclusive place and our book shelf).

And check out eight episodes of our video series called A Family Like Mine, which features diverse parents raising children with a wide range of disabilities.

Monday, May 27, 2019

'We Carry Kevan' aims to inspire a new model of inclusive travel

By Louise Kinross

Kevan Chandler paid a visit to Holland Bloorview last week on a tour to promote his new book We Carry Kevan: Six friends. Three countries. No wheelchair.

We’ve interviewed Kevan twice. Once about his 2016 trip to Europe with friends who carried him in a modified backpack, and once as he planned a similar trip last year to China, where he visited care centres that support orphans with disabilities. Kevan lives in Fort Wayne, Indiana, has spinal muscular atrophy, and weighs about 65 lbs. It was awesome to meet Kevan in person.

BLOOM: What is the purpose of your new book?

Kevan Chandler:
The new book chronicles our adventures in Europe and then China, and everything building up to that, with a little bit of autobiographical information about my childhood. It’s a travel memoir of our journey so far, and within that it gives a lot of insights on my perspective about disability and our friendships and how that all ties together.

BLOOM: What message do you hope readers take away?

Kevan Chandler:
I think for folks with disabilities, it’s an encouragement to see someone with a disability living a full life, and in such a way that people can read it and say ‘Oh, yea it is possible. I can do that, too, in my own way. Our story is about how we figured out how to do things. We’re not telling people how, but saying you can figure it out with the people around you.

For the able-bodied community, the book is an insight into a world they may not be familiar with, and an encouragement to plug into that world. It’s an ice-breaker.

BLOOM: We spoke with you before you went to China. Now that you’ve actually been there, what was the greatest challenge?

Kevan Chandler
: There were a lot of challenges. We went to three cities and we had three very dynamically different experiences. Going into each city, we’d get settled, fall in love with the place and have to leave. We spent most of our time in care centres for orphans with disabilities—really getting to know the children and staff and very quickly building some life-long relationships. It was surprising how you can be somewhere for only four to five days and feel homesick for that when you leave.

BLOOM: I guess you were immersed in the children’s lives.

Kevan Chandler:
To see that 24-7 life of caring and loving for these kids, and being in that community, yes, we were immersed. And there was a physical toll as well. The first city we were in was a village in the middle of nowhere. The conditions were more difficult there. The other care centres were a bit more Western—spectacular, clean and well-equipped.

BLOOM: What did you do there?

Kevan Chandler:
We rolled around on the floor and played with them and held them and cuddled them and talked with them. They loved having us there. Most of the nannies and caregivers are women, so it took a little time for them to get used to a group of guys.

There was a language barrier and a lot of the children were non-verbal, so there wasn’t a lot of communicating with words. At first the guys brought me in and set me in my backpack with the kids, but the kids didn’t know what to think of the backpack. I decided it was better to lay me on the floor with them: ‘I’m here, I look like you.’ We talked with them and made noises and rolled around.

BLOOM: Did you take any of your backpacks with you?

Kevan Chandler:
We took two to donate. The staff would bring a child into the room to meet me, and one of the guys would get me set up in my backpack while the child watched. If the child responded well, we’d pull out the extra backpack. We’ve been working with Deuter to develop an adapted design. When we get the first order in this summer we’re sending 10 to the care centres, with a plan to send more.

BLOOM: What was the greatest joy of the trip?

Kevan Chandler:
Being with the kids was the greatest joy, and getting to experience it with my friends. You can imagine the heart of these guys to care for me like they do, so I can travel with them. We saw everything from the care centres to the Great Wall (see photo above) and the Shaolin temple.

BLOOM: Isn’t there a lot of stigma towards disability in China?

Kevan Chandler:
Yes. People with disabilities are hidden away by their families or the system. You don’t see a lot of people with disabilities. We saw one lady in a wheelchair in the market, and otherwise never saw anyone with disabilities in our three weeks there.

Something I was surprised by was that when we would walk through the market or the city, people—especially of the older generation—would stop and give us the thumbs up and shake the hand of whoever was carrying me. They seemed to have a lot of respect and appreciation for what the guys were doing.

We knew there would be a language and some cultural barriers. But we hoped that the spectacle of one guy carrying around another guy would be a visual that would inspire and encourage people.

BLOOM: How often do your friends switch off with carrying you?

Kevan Chandkler:
We try to do a 45-minute switch, that way no one gets completely worn out. Something really neat was that we had other people, outside of our team, carry me as well. At the care centres, a couple of the workers were big guys who said they’d like to help out, so they took turns when we were in the market. Our translator, who didn’t come to carry, also carried me as well. We had only brought three carriers, so it was cool to incorporate more people.

BLOOM: You have a non-profit called We Carry Kevan. What is the mission?

Kevan Chandler:
Our mission is to redefine accessibility as a cooperative effort—people helping people, and getting involved with each other’s lives. Right now our main focus is implementing the backpack, and encouraging people who can, to use it. It will be available this summer and is a one-size that fits up to 70 lbs.

BLOOM: What does it cost?

Kevan Chandler:
It’s US$375. It’s completely adjustable and versatile for different sizes and needs. For the past two years we’ve been developing it with Deuter. We‘ll work with a family to customize it to each individual. Managing that, and with my book coming out, has been a full-time job.

BLOOM: What makes your travel unique is the participation of really close friends. How can that work for kids who don’t have friends?

Kevan Chandler:
I talked to my mom about it recently, and she said when I was diagnosed she and my dad decided they would raise us as normal as possible (my sister also has spinal muscular atrophy). They knew that would take a lot more work, but they wanted us to be involved in the able-bodied community.

What they ended up doing was that we were out in the world, and we also invited the world in. That introduced that idea of community. It normalized for our community the idea that my sister and I, we had needs, and people could help out. It taught us not just to ask, but to invite people into that. It also taught our immediate community how to respond. As I got older, it became more my responsibility. It’s going to be uncomfortable, but you have to put yourself out there. It’s worth a try. Everyone may not get it. But the people who do get it are going to be awesome.

You can follow Kevan at We Carry Kevan. The group is working on organizing international shipping for its adapted backpacks. If you have any questions, please e-mail at The photo below was taken at one of the care centres in China where kids got to try out the adapted backpack. Check out Kevan's Ted Talk.