A doctor reveals her hidden disability

By Louise Kinross

Dr. Paige Church is a neonatologist at Sunnybrook Health Sciences Centre and a developmental pediatrician who sees children with spina bifida at Holland Bloorview. Last Monday, she wrote about what it’s like to be both a doctor and a person with a disability in a JAMA Pediatrics article. Paige has spina bifida, and she begins the riveting piece with her own medical record.

BLOOM: You and I did an interview a couple of years ago, but you decided it wasn’t the right time to share your story. What changed?

Paige Church: I think our conversation instigated a lot of reflection, and then maturity and time added perspective. I had to think and think and think about how to tell the story in a way that maintains dignity and privacy, but that draws attention to the issues that are woven into it.

BLOOM: What do you hope health professionals take from it?

Paige Church: That we need to start being more individualized, and not textbook, in conversations with parents whose child may have a disabling condition. Trainees at times have found it frustrating that there’s no formula. They want to cling to ‘If this happens, then this is what I do.’ I think when it gets into conversations around disability and living with x, y or z, it isn’t that easy to formulate that life into a simple package. Messaging that it is simple is a mistake.

BLOOM: How were you taught to counsel parents about a pregnancy that involves a disability?

Paige Church: There are essential components that need to be conveyed, but we make the mistake of simplifying it to such a degree that you can do it the same for everyone. We need to focus a lot more on exploring [each] family's structure and values and perspectives. I might spend an hour just talking to one couple about who they are: Their jobs, their values, their religion, their extended family, their thoughts about disability.

And then convey essential information in real-life terms, not medical labels that often don't make sense. We need to describe the day-to-day outcomes that are possible, and explore how this information fits into a family and their resources and challenges. There isn't a specific recipe for any given condition. It has to flow from the questions, concerns or insights that [a particular] family shares.

I worked with and learned from Adrienne Asch, who was an American bioethicist and disability advocate. She taught me a lot. She challenged me to think about how families are not clubs. You don't pick your members. Certainly I want children to feel loved and accepted and that factors into my counselling significantly.  

BLOOM: In your article you talk about how the effort to appear normal in your life and work is exhausting. What motivated you to want to appear normal?

Paige Church: I might be making a sweeping generalization, but I think for kids who grow up with a disabling condition like mine, where there are no outward signs, you have two paths to walk when you get to school. One is that the school treats you like everyone else, and you keep quiet about your extra issues. The other is to start sharing information that is quite private. When you get into bladder and bowel management, how do you do that in a way that isn’t stigmatized or bullied? As a child, I think I just perceived the stigma and decided to go the way of least resistance, and keep this all very quiet.

BLOOM: I’ve heard some unbelievable stories about children who are incontinent, and how they don't drink for the entire school day to avoid having an accident.

Paige Church: Yes, this is a strategy that's used. It's not a good one, but it's reinforced because it works, at least in the moment. I certainly have used it myself. It’s a strategy we use when we can’t afford to have problems. When I had an appendicocecostomy, my surgeon said ‘Why am I doing major surgery on you?’ I said ‘Do you realize that I've been limited to eating a handful of crackers for the whole day? I can’t afford to have an off day. I can't afford to not be available to go into an emergency in the NICU.’

BLOOM: I wasn’t clear on what that surgery was.

Paige Church: The distal end of the appendix is cut off to create a hollow tube and channelled through the abdominal wall to make a stoma you can put a catheter into. This is an option for some children with spina bifida and other conditions associated with fecal incontinence to evacuate the bowel once a day in a controlled setting. 

BLOOM: But before the surgery you didn’t eat during the day? So you were starving?

Paige Church: I’ve got more dental bills than I can count. You eat candy most of the time.

BLOOM: Doesn’t it seem unfortunate that a person has to have a major surgery for incontinence?

Paige Church: No. It was life-changing for me.

It takes the pressure off. It gets you back to being like everyone else with a degree of control over these private functions. It still isn’t perfect. But if six out of seven days are more controlled, it allows you to focus on other aspects of your life, without being consumed by worry.

BLOOM: Because you have firsthand understanding of spina bifida, you must have had unusual conversations with youth with spina bifida, in the early days before you shared about your experience.

Paige Church: Early on I looked like I was a real expert, which was kind of nice. I knew a lot of the intimate details. Over the years I’ve learned there’s no way to say ‘I have spina bifida, too,’ because there are a thousand different types and many ways a person can be affected.

As a resident, I once shared when a baby was just born that I had spina bifida. But the baby’s level of involvement was different than mine. It set the stage for expectation, and, as a result, I worry that it did more harm than help with bonding.

Now I share my story on an individual basis. It may be with parents when their children are toddlers. Or with older children who are struggling with some aspect of the condition, and I can share my story to lend insight.

BLOOM: In your article you talk about how the medical world views disability in a black and white way as a negative. You were taught that telling someone they have a disability is equivalent to telling someone they have cancer or will die.

Paige Church: Absolutely.

BLOOM: What I got from the article was that your experience of disability is the opposite of simple. That’s it’s rich and complex and full of ambiguity.

Paige Church: Yes, and that richness and ambiguity is not captured anywhere in medicine. For every horrible thing I’ve experienced, I can say there are five things that have been great. For example, if I didn’t have spina bifida, I wouldn’t have my daughter, who we adopted. And my life would not be full without her. And I wouldn’t want my own child in a trade for her. If I could have, I’d have had more of her.

BLOOM: You note in the article that your challenges with spina bifida helped you pick a fabulous husband.

Paige Church: It shapes who you are. Because of some of my obstacles, I grew and changed. I kept looking and waiting for someone who wouldn't see the challenges, but rather would see me.

BLOOM: You say that you provide counselling that is balanced, sensitive, thoughtful and individualized, rather than objective. What does the word objective mean in medicine?

Paige Church: It’s supposed to mean you don’t have any bias. You’re not bringing into the discussion anything that is subjective or is your interpretation. That’s not necessarily a bad thing. But it does become a problem when you think about the fact that it’s impossible to not have some degree of inherent subjectivity.

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Taking away a parent's guilt may be 'my best gift'

By Louise Kinross

Physiotherapist Kelly Brewer didn’t picture herself working with children. For 11 years she worked with adults in the intensive care units at St. Michael’s Hospital. “I loved the teamwork, I loved the excitement, the new learning and the variety,” she says. “There was always something different working in intensive care.”

But then in 1990 her kids began taking swimming lessons at Holland Bloorview. “St. Mike’s had the best feeling in the world,” she says. “There was something so caring about that organization. I felt there was a similar feeling here—there was a real caring you could feel as you walked through the corridors. At the time I was looking for a change of job. In those days Bloorview was organized by ages and there was a job in the teen unit and I thought ‘I can work with teenagers.’” BLOOM interviewed Kelly about her 26 years of work here since.

BLOOM: What was it like to move from adult to pediatric care?

Kelly Brewer: I found it very hard and also a little sad.

BLOOM: Do you mean you missed your adult work, or that it was hard to adapt to the new work?

Kelly Brewer: Both. In acute care, turn over happens so quickly you’re always seeing new clients. It’s very fast-paced, where rehab, especially in those days, was much slower. That took me a long time to get used to. For my first two years here, I went back and worked one weekend a month at St. Mike’s to maintain my cardiorespiratory skills.

BLOOM: While you were working here full-time?

Kelly Brewer: Yes, my husband would look after the kids.

BLOOM: So what did you do when you first came here?

Kelly Brewer: I worked with teenagers on the brain injury unit from Monday to Thursday and on Friday I worked in the spina bifida clinic. It was a huge learning curve. I loved the kids, but often felt sorry that they had me for their PT! I was naïve and unrealistic in my expectations of what was possible and what I thought families could do.

BLOOM: Do you mean in what families could carry through at home?

Kelly Brewer: Yes. Over time I realized these families were coping with double what I was coping with. I was raising three kids while working full time and I certainly didn't have much energy at the end of the day. The families taught me a tremendous amount.

I remember telling a family ‘I don't recommend that your child do stairs this weekend—it's still a little early for that.’ Then they came back and said ‘We did stairs because that’s the only way we could get her up to her bedroom.’ And I thought ‘stupid me.’ It was a real eye-opener. 

There was a lot more to learn here from the families than in acute care, because in acute-care everything is so condensed, you might only work with someone for a month. But here, you get to know the families and play a very much larger role in a person’s recovery.

BLOOM: What else did you learn from families?

Kelly Brewer: It broke my heart to hear about the financial constraints people were under. So many times I would say ‘Well, could you think about going out to the gym?’ and the parent would say ‘We don’t have the money and I don’t have the time.’

The families taught me about the ‘busy-ness’ of their lives. You can’t judge because you aren’t living their life. There are single parents, parents with mental illness, parents with multiple kids, parents going through divorces. You can’t control everyone’s situation. I’m way more realistic as a therapist now. When I’m setting anything up I do it collaboratively and I say ‘Does this work for you?’

BLOOM: What is a typical day like?

Kelly Brewer: I still work Monday to Thursday in the inpatient brain injury unit and Fridays in the spina bifida clinic. With the inpatients, I’m responsible for assessment, development of goals and active treatment. I see the kids four to five times a week and also assign some care to the physio assistant. We attend family meetings every four to six weeks, and also participate in weekly rounds.

There’s a fair amount of documentation to complete. Our kids are typically followed by another provider when they leave Bloorview, so we have to make sure there are reports to share with external agencies. In theory, computers are supposed to save us time, but right now going through all the different screens takes more time then when we used to dictate, which takes away from clinical time.

BLOOM: How many kids would you work with in a day?

Kelly Brewer: Usually four or five, so I typically spend an hour with each child.

BLOOM: Wow, that’s a lot.

Kelly Brewer: Every child is different. Some kids are more straightforward than others. Some clients are very challenging. But the good thing is we work in a team so if I have any questions or concerns there are really skilled people I can speak with.

That’s why I love doing what I do. I love the whole teamwork thing. If a child has behavioural issues, we have psychologists and child and youth workers and child life specialists to consult with. We also work very closely and collaboratively with occupational and physical therapists.

BLOOM: What’s an example of a challenging situation?

Kelly Brewer: It can be very hard to work with a child that isn't motivated or doesn't want to be here and has issues attending therapy. Sometimes a child's physical problems are challenging to treat and I need to consult with other PTs that I work with for advice. It's also very difficult when you just can't help your client achieve their goals.

BLOOM: It sounds stressful.

Kelly Brewer: We frequently have to deliver bad news. I was just talking to a parent on the phone before I came here. She had to go back to work, so I had to phone her with assessment results and goals. That’s the hard part. The good part is that at least I’ve met her once and we had a good conversation that one time. But I can’t read her body language on the phone, and I had to give her some news about how I don’t know how much of a difference therapy can make in her child. I try to give news in a way that is realistic but still hopeful. I hope I do it well and I hope someone would do the same for me.

BLOOM: That must be hard.

Kelly Brewer: It is stressful. I’ve matured over 25 years. I consider myself to be very empathetic. I try not to be judgmental and I’m very honest and open, just like I’d want to be treated. But it’s hard to give that information and I feel badly when I have to give news that is sad.

BLOOM: What do you do to cope with your own emotions?

Kelly Brewer: I talk a lot to my team members—the PTs and OTs—about the kids and that really helps. The best piece of the job is who you work with, and I work with some great people.

I also walk back and forth to work and that really helps because I plan my day. It’s a gift. I think about things when I’m coming in and how I will deal with something. If I have a difficult conversation I can rehearse it. That’s not to say that I won’t wake up some nights and think ‘Shoot, did I do that right? Did I say it right? Should I have given them that walker?’

I do wake up and worry and stress about things. Having family responsibilities is a distraction. All three of my kids have worked here and all volunteered here. Sometimes things came up at the dinner table when they were young. You can’t help but share what you’ve been through, what you've learned and how it has affected you.

BLOOM: What do you love about your work?

Kelly Brewer: A couple of things. I love the families I interact with. And I love the teamwork. It’s very cohesive and intensive and you have to work together. I also really like as an organization the whole client- and family-centred care focus. I went to that conference years ago at the Institute for Patient and Family-Centred Care. It’s great that the organization promotes this philosophy, and it’s great to feel comfortable with your relationships with families and that they’re so included in what we do. I love the teams I work with. I love working with nursing.

BLOOM: From when we were inpatients, I know that nurses are the heart of what we do. They spend the greatest amount of time with families.

Kelly Brewer: We need them. I need them. Having good relationships with the nurses is fundamental to the work I do. I know them, they know me and we’re working together for the child. Sometimes they don’t get the merit they deserve.

I have to have positive relationships with nurses on the unit. Let’s say a child’s having a bad day and the nurse is able to share that with you. They need to know what’s going on and we need to know what they’re doing in their care that’s supporting all of this. We’re equal players.

BLOOM: Have your thoughts about disability changed over the years?

Kelly Brewer: When I first came I was much more uncomfortable with people with different disabilities because I’d had no exposure as a student or a physio. I’m way more comfortable with it now, I think at all levels, including emotionally.

BLOOM: How have you changed as a person as a result of your work?

Kelly Brewer: I was never known as an overly emotional person, and I guess I’m still not. But I’m way more pragmatic, honest and realistic.

BLOOM: Has that influenced you in your own life?

Kelly Brewer: I have to laugh. My daughter will say ‘Oh mom, I had a really hard day.’ And I’ll say ‘Well, so have I. There are people having much harder days than us out there.’ And she’ll say ‘That’s not the answer you’re supposed to give! You’re supposed to be compassionate.’ Our work highlights how difficult some people’s lives are and you realize the complaints we have are nothing compared to that. 

BLOOM: So you have perspective.

Kelly Brewer: Yes. I know how hard it is to work full time and raise kids who don’t have a disability. But to put on top of that the stress of a disability is really hard. As I’ve matured, that’s one thing I’ve come to appreciate.

One thing I’m better at is having much greater empathy and understanding for my students. One of the reasons I love working here is that it’s a teaching hospital. I’m very passionate about working with students, but I understand and am much more sympathetic to them. I know how hard it is to walk into this situation.

When I was younger I was much stricter and I’m much more forgiving now. So as you age you have more wisdom and perspective and see things through a different lens. I’ve spent almost 40 years working as a physio. I feel I’m a much better listener. I don’t judge as much anymore. I really listen to a family’s story and try to understand it.

The other thing I do is teach internationally-educated physios through the University of Toronto. It’s a course on Canada and the health-care system. I hear the stories of students who have done their schooling in other countries, and it enriches my work here, which is so multicultural.

BLOOM: What advice would you give to a young ‘you’ just starting out?

Kelly Brewer: For people coming in here, I guess I would say really try to walk in someone else’s shoes. Set realistic expectations. Listen to the family. For years, I would give families a home program in spina bifida and six months later they’d come back and I’d ask ‘Are you doing any of the exercises?’ and they’d say ‘No, we don’t have time.’ So now I don’t give them a home program unless they want it. I ask if I can help them in another way.

Sometimes the greatest help I’ve given is to make parents not feel guilty. I’ve had conversations where parents say ‘Maybe if I’d stretched him more, he wouldn’t need surgery.’ So I have these candid conversations where I say ‘No, You’re not responsible for it. You did the best you could at that time and you have to let that go. It will be what it will be. [Releasing] parents of that guilt may be the best thing I can give a family.

That honesty comes from being a working parent myself. I had to deal with homework and dinner and activities and I couldn’t do everything, and I didn’t have a child with a disability. I tell families you can’t do everything, you have to find priorities and deal with them. If it’s your child’s mental or emotional health, then that’s what you need to focus on. If your marriage is the most important thing, put your energy there.

A lot of times parents have taught me the most by ignoring what I tell them to do. Then, when I really listened and thought about my own life, I had to ask why I was asking them to do something they couldn’t do—that I couldn’t do! My best gift is to listen and say ‘it’s okay, it’s all right that you can’t do this.’

BLOOM: The problem is that every parent wants to be an A+ parent. But sometimes a child’s outcome doesn’t reflect what the parent put in. There are these homilies like ‘If you work hard enough, anything is possible.’ That gives parents the idea that they control the outcome for their child. But sometimes even when parents do everything imaginable, the child doesn’t make the progress they were hoping for. Parents need to be given permission to accept their child where they are.

Kelly Brewer: In spina bifida, if the child was walking when they were six or seven, but they don’t want to now at 11 or 12, because it’s too difficult, we let the parents know that that’s okay. They aren't being a bad parent for letting their child use their wheelchair more.

BLOOM: If you could change one thing about the health system, what would it be?

Kelly Brewer: I wish there was equal access to services for families. It’s really frustrating and sad when I hear about some families in one region of CCAC getting great services, while others in another region have no services.

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Wanted: Dads raising kids with disabilities

By Louise Kinross

Matt Swan has been raising his daughter Leah, 16, on his own for over seven years. Leah was born with spina bifida and hydrocephalus and uses a wheelchair and g-tube. Before he separated from his wife, Matt worked from home so he could be primary caregiver. He’s eager to connect with other dads of kids with disabilities, particularly those who, like him, have full custody.

BLOOM: How did you react when you learned Leah would have disabilities?

Matt Swan: I didn’t know she would be disabled until the week before she was born. I was still trying to process it when she arrived prematurely. She was taken away in an incubator and the neurosurgeon started telling us what her disabilities would mean.

It was like getting repeatedly punched. ‘She’s going to be in a wheelchair.’ Punch. ‘She won’t be able to feed herself for the rest of her life.’ Punch. ‘She’s not going to talk.’ Punch. ‘She’s going to be mentally retarded.’ Punch. When you get punched that much you go numb.

BLOOM: What did you do?

Matt Swan: My wife was recovering from a C-section so I left the hospital for a walk to collect myself. It was a beautiful autumn day and all the leaves were turned. The one question that kept circling in my mind was ‘Why me? What about all the healthy children who were born to people who didn’t want kids? Why did I have to have a child who was disabled?’

I’m not a religious person, but it occurred to me that Leah being born into our family was some part of a grand design because she needed parents who could give her a good life. The light switch went on: ‘I’m going to do my best to show her the beauty of the world and give her the life she deserves.’ I made my peace with it.

BLOOM: What about Leah’s mom?

Matt Swan: She didn't have that moment like I did. I think she had trouble accepting and coping with the reality of Leah's condition. I arranged to work from home so I could care for Leah and take her to all her appointments. She had about 25 surgeries in the first three years, so it was really difficult. The stress took its toll on our relationship.

BLOOM: How is Leah affected by her disabilities today?

Matt Swan: She uses a wheelchair and is diapered and g-tube fed. Psychologically she’s about the age of a five year old. She goes to public school and is in a special class.

She has words and sentences. She doesn’t say much, but I know there’s a lot more she’s processing than most people give her credit for. She often surprises me with things she remembers. Some people don’t understand her speech, but I know what she’s saying.

She loves to watch Sponge Bob and America’s Funniest Videos. Her iPad is like an appendage to her.

She’s a beacon of light. She’s so happy, funny and positive that everyone who meets her falls in love with her. She’s a joy to be around. I’m tremendously proud of her.

BLOOM: What was it like to become a single dad?

Matt Swan: It wasn’t really an adjustment day to day, because I was used to her routine: bathing her, sending her to school, feeding her, changing her diaper, taking her to appointments. One of the challenges I’ve faced is being accepted as a parent. When it comes to single-parent families, everyone assumes the mother has custody and is the primary caregiver. I get a kind of shocked, stunned look when I tell people.

I also realized the system was quite different for single dads. In the first year we were visited about four or five times by Family and Children’s Services to do welfare checks. A government worker even suggested that it wasn’t appropriate for a single man to raise a little girl. I was appalled. Do single mothers go through this? I don’t think so.

There were other hoops, too. The child tax benefit was automatically going to my ex-wife. When I called Revenue Canada to tell them I had full custody of our daughter, they said I needed letters from her school, teacher, doctor and a notarized letter from a lawyer. After producing all this documentation, I asked what my ex-wife had to do to get the benefit: nothing, they said, just apply.

Seven years later, I still get appointment letters from hospitals addressed to my ex-wife, even though we’ve moved and Leah’s mother lives out of town. Leah’s had five surgeries since last October and her mom showed up for just one of them. The entire time the doctors and nurses addressed her directly and didn’t even acknowledge I was there. Finally I took one of the doctors aside and said ‘It’s fine for you to talk to both of us, but you should know I have full custody of my daughter and she lives with me.’

BLOOM: What would you say was the biggest challenge?

Matt Swan: The greatest challenge for me is the networking part. All parents of kids with disabilities feel like they’re working in a bubble, and no one really understands what we go through. There are a lot of groups for single parents of kids with disabilities but I’ve gone to a couple of them and I’ve been the only man there. At first I’m treated suspiciously: ‘What are you doing here?’ Then I often get sympathy.

I just want to go to these meetings to network, because the system is so big and complex. I need to find out about services and learn what everyone else is doing. But because I’ve been the only man in the group, I’ve often felt awkward: the moms connect with one another in a way that I’m not able to. I usually ask a few questions, listen to other experiences, take notes and leave early.

I’ve looked for single-dad groups but I’ve yet to find one that’s for single dads with kids with a disability. I do feel like an endangered species.

BLOOM: Even though you were used to being Leah’s primary caregiver, it can’t be easy doing this on your own.

Matt Swan: People often say: ‘I don’t know how you do it. It must be so difficult.’ It’s difficult for any single parent, regardless of their child’s level of ability. Leah’s routine is all I know. I don’t have any other children. I don’t feel it’s any more or less difficult, it’s just different.

I work from home, and juggling my family life and work duties can be a challenge. I sometimes feel stretched thin, tired, trapped or frustrated. I had an accident with my van in July and it was written off. It was our way of getting to appointments, so for the past month and a half I haven’t had a vehicle. Getting around has been an even greater challenge.

But when Leah and I are on the couch watching TV together, or when I tuck her in to bed at night and she’s lying there with this little smile on her face, it just makes me melt. I don’t regret any of it, seeing her happy and hearing her laugh.

BLOOM: Does Leah have friends?

Matt Swan: Yes and no. She has people in her life that she likes but she won’t go out of her way to play with them. She likes to be on her iPad.

BLOOM: I understand you became a family leader at Holland Bloorview?

Matt Swan: Since we moved to Toronto six years ago I’ve found the most support being part of Holland Bloorview. I get to meet other people and after a while I see familiar faces and people recognize me and Leah and that’s fantastic. They really get it. 

BLOOM: What advice would you give other single dads?

Matt Swan: Get out there and get connected, which is true for all families. As men we’ve been nurtured to be tough and strong and act like nothing bothers us, but that’s completely not true. We see our kids suffering and we do get emotional. It is tough some days and it’s difficult to work through those feelings. You have to have someone to talk to. I talk to my family and friends on the phone. But I don’t usually talk to other parents of kids with disabilities.

I use respite when I can. At first it was difficult for me because I felt like I was validating everyone’s suspicions that I can’t take care of my daughter. After being scrutinized by Family and Children’s Services it left me wondering whether dads are inferior parents. I just don’t believe that’s true. I miss her when I put her in respite, but you really need that time as a parent. You have to take care of yourself. Leah doesn’t get homesick and she adapts so well to new people and situations. She looks forward to her time away.

BLOOM: Are you interested in starting a group for single dads raising children with disabilities?

Matt Swan: I am. I’d love to hear from other dads raising kids on their own. I can’t be alone out there. It’s important to have that support. Even though we’re under societal pressure to fill this ‘tough guy’ male stereotype, we still have worries, doubts and confusion. The system itself is very confusing. It would be great for us to have a meeting to share experiences and ideas, even informally, like over a game of pool.

Matt Swan can be reached at canaderik@gmail.com

 

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Is riding a wheelchair scary or exhilarating?

By Louise Kinross

When you hear the word ‘wheelchair,’ what comes to mind?

Is it scary and confining, or liberating, fun and even glamorous?

Yesterday I read disability activist Emily Ladau’s piece in The Huffington Post about a public service campaign called Beware The Chair. To raise awareness of how osteoporosis weakens bones, making them susceptible to breaks, an empty, remote-controlled wheelchair chases people down in a mall and on the street, scaring them. The message? “If you don’t pay attention to osteoporosis, you’re going to wind up in one of them,” says one of the random people interviewed.

The campaign was initially claimed as a partnership between the National Osteoporosis Foundation, the National Bone Health Alliance and others. The two national groups have since distanced themselves from it.

But the Beware The Chair video, with its ominous music, black screens and admonition to “stand up to osteoporosis” feeds into common perceptions of the wheelchair as a tragedy.
Sue Austin, the British performance artist pictured above, told BLOOM she was surprised by people’s negative reactions when she began using a power chair several years ago because of a chronic illness. She was studying fine arts and began a project to incorporate her wheelchair into her art. As part of her research, she asked people what they thought of when they heard the word wheelchair.

Like the images portrayed in the Beware The Chair campaign, what came to mind was “fear, restriction, limitation and pity,” Sue says.

This contrasted starkly with Sue’s experience. “I’d become housebound and my first experience trying a power chair was ‘this is my freedom.’ It means I can get back out into life and into the world and it’s so exciting to be able to zoom along and feel the wind on my face.”

Sue began making art that incorporated her wheelchair, playing with it and painting it. She then learned to scuba dive and worked with Britain's National Health Service to turn a wheelchair into one that could be operated underwater. Her project “Creating the Spectacle” was part of the Cultural Olympiad in London in 2012.

“The ideas attached to scuba equipment are ones of excitement, adventure and expansion,” she says. She wanted to pair these with the wheelchair, taking it places it'd never been before and upending people’s mindsets.

At the Cultural Olympia events in London, people watched Sue move effortlessly underwater like a mermaid—except she did it in a wheelchair.

Motors under her chair propel her forward while Sue steers two acrylic hydroplane “fins” that curve out from the footplate with her feet: up, down, side to side and loop the loop, like a pilot doing graceful air manoeuvres. She appears weightless, unlimited, even glamorous, with her long dark hair waving behind the chair.

“I wanted to open up a new space where people feel the clash of their preconceptions meeting this new image, and it allows people to view a wheelchair in a completely different way,” Sue says.

This is a message numerous disability bloggers have conveyed recently. In Why using a wheelchair is the opposite of giving up at The Mighty, a young woman with cerebral palsy writes: “Please don’t be afraid of something that’s given me a chance to move along in the world, something so infused with the essence of my being.” And “When I ride in it, I’m not confined. When I ride in it, I’m free. Free and rolling forward.”

This concept of the chair as a part of one's essence fits with a description in a new textbook co-edited by Holland Bloorview scientist Barbara Gibson called Rethinking Rehabilitation. A chapter in the book likens learning how to use a wheelchair to making it a part of your body. “As a person is learning to do wheelies, she is also learning to use her body via the chair, thus transforming her body to include possibilities and limitations afforded by the chair…In this re-embodiment process, her body is the chair, the chair is her body; she doesn’t ‘have’ a chair—rather she is enwheeled.”

But too often people view the wheelchair not as a natural extension of a person's body, but as an unwelcome contraption that weighs them down.

Parent blogger Mary Evelyn writes about taking her toddler son with spina bifida out in his wheelchair and being stared at as if she’d dressed him in a clown costume with a big red nose. In Want to know what it’s like to go out in public when your child’s in a wheelchair? she writes “...you are not invisible. You do not blend in. And you’re afraid that if you reveal even a hint of discontent, all those strangers behind all those watchful eyes will think one thing–“Well, of course she’s stressed. Not surprising, really. It can’t be easy… after all, look at that baby of hers.”

How do you change the storyline about wheelchairs?

Read an earlier interview we did with performance artist Sue Austin.

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Beauty exposed

“I was nervous… about seeing my own back... something that nobody sees... out in the open. I thought my back was going to be… what’s the word... grotesque? After I saw it, I thought, that’s not bad. It is my body and that’s it.”

By Louise Kinross

Photographer Steve Kean remembers sitting, as a child, on a stretcher, “nearly nude, and being talked about as if I wasn’t there by this doctor and that doctor. There was an ampitheatre with tiered seating and [medical students] watched. I was looked at as spina bifida, not as a person.”

That early indignity fuelled Steve’s desire to shoot portraits where he’d give adults with spina bifida “a choice about how they wished to be looked at and what they wanted to show.”

The result is Front to Back, a series at Strange Beauty, this year’s Tangled Art & Disability Festival at 401 Richmond St. W. in Toronto. “The idea is that these are whole people,” Steve says. “They have a whole story to tell, just like a book, which you read from front to back.”

The back has particular meaning for people with spina bifida, because it’s the spot where surgery is often needed to push part of the spinal cord, which doesn’t grow properly in utero, back inside and close the opening. Due to nerve damage, many people with spina bifida use wheelchairs.

In addition to a traditional portrait, each subject in Steve’s exhibit has a second image of their exposed back, which in some cases includes surgical scars. “It was an opportunity for them to show off their back and for me to light and photograph it as beautiful,” Steve says. “It’s stark and out there. These people were brave. Front to Back is a path to a sense of dignity and control over what happens to us. Audiences will see people first.”

The exhibit includes moving comments from each subject on why they participated.

“This is the scariest thing I could ever do. I had to do it for myself. It was time to expose something that all my life I had found ugly, embarrassing, humiliating. That’s the gift we’ve been given with this project—the opportunity to completely expose something that all our lives we have been hiding.”

Make sure to visit both Gallery 44 and Abbozzo Gallery in 401 Richmond St. W. Steve will be giving a talk on the exhibit on April 25 from 3:30 to 4:30 p.m. The building is full of Strange Beauty exhibits and is well worth the visit. Click on these images to see them larger. And you may recognize one of the models at the exhibit!

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Is newborn euthanasia an answer to parent pain?

By Louise Kinross

I was surprised to see this headline on a CBC The Current story yesterday: Newborns should have the right to die, ethicist says. Can newborns assert their rights?

The piece is framed as a discussion about euthanasia for newborns with severe, terminal illnesses.

One of the guests is Udo Schulklenk, a professor of philosophy and the Ontario Research Chair in Bioethics at Queen’s University.

He wrote a paper defending euthanasia of some infants with severe, terminal conditions.

During the CBC interview, the Dutch Groningen Protocol is referenced. The waters get muddy here as this protocol supports euthanasia not just for infants who will die imminently, but for those who have a poor prognosis and expected quality of life. For example, “a child with the most severe form of spina bifida will have an extremely poor quality of life, even after many operations,” write the authors of this paper describing the protocol in the New England Journal of Medicine.

Spina bifida is not a terminal condition (please see Deliberate termination of life of newborns with spina bifida, a critical reappraisal). 

The CBC interview doesn't make clear that the practice in the Netherlands includes euthanizing newborns with severe disabilities who are not terminally ill.

Udo argues that “once professionals have decided that further treatment would be futile and it’s a hopeless case, we ought to take into consideration whether or not the parents really want to sit by while treatment is withdrawn and while there is a prolonged period of time until eventually the newborn expires.”

Udo is referring to the process whereby nutrition and hydration provided by a nose or stomach tube is stopped and the child dies within days or weeks.

In 2013 the Royal Dutch Medical Association made a similar argument in a policy (click on English press release) that supports giving a lethal injection to newborns with serious birth defects whose tube feeding had been withdrawn, because watching them die “causes severe suffering for the parents.”

Typically, Dutch pediatric medical ethics and law in children’s treatment decisions are based on “the child’s best interests”—not parent interests.

At the time, I asked Dr. Franco Carnevale, a psychologist, nurse and ethicist at Montreal Children’s Hospital, if the argument to include “parent suffering” as a basis for a child's treatment decision is problematic.

“The 'child's best interests' was created to protect the voiceless vulnerable," Dr. Carnevale said. “Any time that the suffering or interests of others in a powerful position can trump the interests of the powerless in medicine, this is a direct breach of their rights. This would treat children as objects that are only worthy in terms of the pleasures they can bring, rather than humans with their own individual rights and interests that should be protected.”

Dr. Stephen Liben, interviewed on CBC yesterday, disagreed with Udo Schulklenk that relieving parent suffering is a rationale for newborn euthanasia. 

“What Udo is speaking to is the suffering of the parents who are watching their child die and it’s true, we can’t remove that suffering," said Dr. Liben, director of pediatric palliative care at Montreal Children's. "Children for the most part aren’t in pain, but the parents are in pain.

“The argument is being made that if you just end their child’s life now, their suffering will end sooner. I think that’s an argument that’s naïve... Is their suffering really over because their child has died? The suffering of the health-care professionals ends pretty quickly, we move on to the next patient...But for the families, how do we know how they feel years later, when a mother looks at a handicapped child smiling and laughing…and thinks ‘my goodness, how could I have asked the doctors, or allowed them, to end the life of my child?’”

When brain scans show severe brain damage in a newborn, Dr. Liben said, the decision is sometimes made to stop tube-feeding. But predicting how a newborn will be affected by brain injury is imprecise. “We're not really good at predicting what’s going to happen,” Dr. Liben said. “We have an idea of what the damage is, but we don’t really know for weeks and even years...to know how those kids will be.”

Dr. Liben was asked whether parents ever change their minds when they’ve chosen to withdraw artificial feeds from their infant. “I’ve seen that several times now,” he said, explaining that in these cases “we start the feeds again” and the children have lived, though "I don't know what's happened to them 20 years later.

“I’ve also seen parents change their idea from Oh, my poor child, this is so horrible” to returning two to three years later to say “The doctors have to do more. I love my child, he’s handicapped, but he...interacts with the world.”

Rather than talking about euthanasia, Dr. Liben said we need to “improve access to palliative care. “I’ve been doing this for 20 years and I shudder to think of what could happen” if euthanasia of newborns was practised.

“Given the way healthcare really works—the way it isn’t all studied doctors and nurses who are comfortable with these things without prejudices in their own minds left, right and centre. Things don’t happen rapidly and equally. The real world out there is there aren’t ethical committees that rapidly convene with intelligent people discussing things all day long.

“This is not what goes on across the country and if the law changes it applies to everybody and I think there’s way more harm than good. Looking at our healthcare system I just see that it would be abused. Is it just coincidental that it’s going to be a cheaper way out for government and for certain hospitals that are under pressure? I don’t have confidence enough in the human factor that we can manage this humanely.”

Take a listen to the CBC piece. Much food for thought.

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The 'unwelcome' mat

By Steve Kean

I love Toronto, I really do. But sometimes I just don’t feel the love in return.

A few weeks ago was one of them. I was at St. Lawrence Market getting supplies for dinner with my wife and a friend when my favourite cheese guy told us that he was leaving to manage a new restaurant in the neighbourhood. But the new hot-spot-in-the-making—in a historic building—won't be wheelchair accessible, he said, so I won't be able to check it out.

I have spina bifida and use a wheelchair.

I've been inside 400-year-old buildings in the U.S. that have been retrofitted, so I don’t buy the “well, it’s a historic building” argument anymore.

In 1967 my parents were supposed to be rejoicing in the birth of their first child. Instead, they watched helplessly as concerned doctors and nurses rushed to save my new life. Since that fateful day I've had over 15 surgeries and probably consumed more than $100,000 in health-care dollars. A system of people, most who've never met me, has expended substantial resources to keep me alive.

So why then is it that the system that valued me so highly when I was born doesn’t deem me worthy of having an accessible environment? Access means I can contribute and live a full life.

Too often, our health-care, businesses and city attractions and amenities seem to work against people with disabilities and their families.

Is it because we're not cute little babies anymore? Do I not matter because I'm a grown up—sometimes smelly, sometimes scruffy? Does the government believe that I should take care of all my needs just like any other adult?

Well, I can take care of most of them. I do a job, two in fact. I help to pay a mortgage and even clean the place. And, I cook. In my own home, designed from the floor plans to meet my needs and those of my wife, everything works. Our little box in the sky is my sanctuary. There I feel welcome. But life is lived outside too, and that’s the problem.

Sometimes as I wheel around Toronto I notice every barrier that society has put up to make me and other people with disabilities feel unwelcome.

I count every step. Every staircase. Every door without an automatic opener. Then there's the insensitive jerk who luxuriates in the comfort of the oversized, accessible public bathroom stall as I wait, trying not to piss my pants.

Usually I am 'grace under pressure.' But occasionally I come apart. I just snap. By the time I get home I'm raw. I need a hug. I need to vent.

There, in my soft place to land, I feel the warmth and love of my wife's hug. She listens quietly and intently as I recount my day. Sometimes I scare her: “Why did they bother to keep me alive and healthy only to throw me out into a world that doesn't appear to want me?” I'll say.

Businesses see accessibility as an added expense and don’t see the value. Many employers see a wheelchair or some other difference and don’t see the skills and abilities of a person. They have to be shamed or worse, forced by the law, into making people with disabilities part of the equation.

I've thought a lot about how I can cope better in a city that makes me feel like a burdensome afterthought, instead of an integral part. Maybe some of my ideas can help youth with disabilities and their families.

First, seek out that hug. Family and friends are on your side and we all need allies when we leave our sanctuaries and go after what life has to offer. Once your spirit is bolstered and a little less raw and raging, look carefully at the particular barriers that are getting in your—or your child's—way.

Who’s directly responsible for a barrier? Who can help you take it down? Try talking to them. It might just get fixed and you’ve helped not only you, but everyone with a disability who comes after you.

Some walls that get thrown up in front of us can’t easily be torn down and so all we can do is try to work the problem. Speak to someone on the ground, maybe the store manager. If that doesn’t do it, work your way up the line.

Toronto hasn’t put out the welcome mat for people with disabilities. Will it ever?

I can’t wait. Time is moving forward and limited. I am squeezing every ounce of life out of my years, to borrow from a cliché. See the golden light first thing in the morning. Take a picture in your mind or with your camera or phone. But see it. Feel it. Notice everything you can.

When the things you can’t access get under your skin, ask for that hug and then fight just a little for change. Other people will notice. The next person with a disability will be able to spend more time here enjoying life, and less time struggling and feeling excluded, thanks to you. Maybe they'll even feel welcome in Toronto, like they belong.

Steve Kean works three days a week as programs and services coordinator at The Spina Bifida and Hydrocephalus Association of Ontario and two days a week as Steve Kean Photographer, doing commercial photography. Visit if you are a foodie!

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Parents at centre of online training to bring Zoey Faith home

By Louise Kinross

Home.

It’s Thunder Bay, and it’s where Amanda Mintenko has always wanted to care for her 15-month-old daughter Zoey Faith—along with brother Liam, 2, and Dad Mathew.

But Zoey Faith was born with spina bifida, paralysis of her vocal chords and apnea, so she requires a breathing tube attached to a surgical opening in her neck to keep her airway open. “When she gets anxious her vocal chords close, so she would suffocate,” Amanda explains.

“At first we were told Thunder Bay wouldn’t accept Zoey as a patient and we’d have to move to Toronto because our local hospital had never cared for a baby who used a ventilator. I said no and wrote advocacy letters to our MP, lawyers, the child advocate and did anything possible to ensure that we got the proper resources at home. I fought for this and I want to make other parents aware, so that another family like ours isn't told they have to move.” 

The transition home for Zoey Faith included a seven-month stay at SickKids and a four-month stay at Holland Bloorview, where videoconferencing was used to train nurses and respiratory therapists in Thunder Bay.

Using Ontario Telemedicine Network’s videoconferencing, Zoey Faith’s parents and the team at Holland Bloorview trained staff in Thunder Bay on the baby's tracheotomy care and how to provide her daily physiotherapy.

“Having the family show Zoey Faith's care right at the bedside helped the Thunder Bay team visualize what they would need to do,” says Maryanne Fellin, a clinical resource leader at Holland Bloorview. “It also allowed the Thunder Bay team to get to know the family, see how Zoey Faith would react in a real setting and then have a discussion during the videoconference.” 

Amanda says she and her husband Mathew learned how to care for their daughter's tracheotomy, ventilator and stomach-feeding tube quickly, “Because we were so determined to come home. I had a two-year-old at home with his grandmother and I hadn’t seen him for 11 months.”

Amanda says the best part of being at Holland Bloorview was a month of “care by parent” where Amanda and Mathew did all of Zoey Faith’s care on their own, only calling a nurse if there was a problem.

“It was fantastic. We knew what we had to do. We had our privacy and it was nice knowing there was someone there to assist when we needed help. At home, we do the work all day, so we have to be able to tell when anything is wrong.”

In addition to using videoconferencing to train health professionals in Thunder Bay, the technology allowed staff there to participate in monthly family team meetings at Holland Bloorview. “Thunder Bay had homework to do and attending the family team meetings meant we could assess how much progress they had made,” Amanda says.

Amanda and Mathew eventually went home first to get ready for Zoey. 

The one-year-old then flew to Thunder Bay with a Holland Bloorview nurse and respiratory therapist. “She loves to fly and it went very smoothly,” Amanda says. “I was comfortable knowing it was staff we knew who were coming with her. I felt she was safe with them.”

Amanda says she loves having her family together at home. “I’ve had a chance to start putting the kids into a routine and going for play dates and we also love having our privacy.”

Amanda says Zoey Faith is a happy, outgoing, playful baby who loves life. The family has seven hours of nursing-care every night so that the parents can sleep. The rest of the time Amanda is the primary caregiver. “I love it. She doesn’t require too much because she’s a very content, happy baby.”

Amanda says she was able to demonstrate Zoey Faith’s care hands-on to local staff in Thunder Bay when the family returned. But she likes knowing that Holland Bloorview is just a call away. “If I have a question I can’t answer I’ll call and speak to a respiratory therapist and they’ll share their insights.”

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A toileting taboo: Kids and incontinence

Pee and poop. We all do it. But what if you couldn’t control when you ‘went?’

What if catheters, timed toilet trips, medication, diapers and sometimes surgery couldn’t guarantee that you wouldn’t have an accident?

How would you keep it a secret?

How would other kids treat you if they found out?

Urinary incontinence and how it impacts children socially was the focus of a qualitative Holland Bloorview study of 11 youth with spina bifida aged six to 18 and their parents.

“No one can tease the kid in the wheelchair, but it’s not ‘normal’ to be in a diaper when you’re eight-years-old,” said lead researcher Amy McPherson, recounting what children told researchers in interviews about how other students responded to their incontinence.

Researchers found that about half of the children were bullied – with a couple being completely ostracized – and most had no close friends. “One parent said she hadn’t organized a birthday party for her child because she didn’t think anyone would come.”

Two children who had learned to self-catheterize at an early age did have good friends and participated in typical childhood activities like sleepovers and camp.

But telling their friends about it was nerve-wracking, Amy said.

“Even the kids who functioned well said, ‘Well, I decided to tell my friends before they found out and ran away screaming.’ And even those kids didn’t share ‘the whole story.' They just told their friends they do things a little differently.”

Toileting in our culture is one of the last taboos, and for students, having an accident or a partially-visible diaper was “social death,” Amy said.

One of the themes that came out in interviews was that incontinence marked youth who wanted to be viewed as normal, and was a barrier to being accepted, having friends and going out.

“Because of the stigma, and the fear that others may find out, these students don’t often put themselves out there and instigate friendships,” Amy said. “It’s not something you want to talk about. You have to keep it hidden.”

“These kids feel stress to keep up a façade,” said researcher and ambulatory care nurse Julia Lyons. “Their goal is to fly under the radar, ‘for no one to notice me.’”

Ironically, parents who were interviewed separately from their children often began by insisting that their child was a normal and regular kid. "Then as the interview went on, it became obvious that their child didn't have friends and wasn't participating in activities, sleepovers, sports," Amy said.

Another theme was independence. “A lot of parents wanted their kids to take ownership of the incontinence issues and felt they needed to learn to do it themselves,” Amy said. “There were still 16- and 17-year-olds who weren’t catheterizing themselves. They used a diaper and had mom do their personal care.”

However, parents sometimes minimized just how hit and miss managing incontinence was for the youth.

“There isn’t a magic bullet for this,” Julia said. “It’s not like if you break your arm they give you a cast. These kids have to do a combination of catheterization and taking medications to allow them to hold more urine and using diapers and pads and even then it’s not 100 per cent effective.”

Drinking a can of pop, participating in gym class or simply being nervous can erase children’s vigilant efforts to stay dry. “The system is so tenuous they’re walking on egg shells on the best of days,” Julia said.

However, parents tended to expect perfection.

“One parent said: ‘She fell off the wagon’ – about an eight year old!”

The researchers noted that some students who did self-catheterize still wore a diaper as a security measure and were reluctant to let it go. They live with the fear that "tomorrow their routine won’t work," Julia said.

School accommodations – such as having students use the staff washroom where they can store their supplies – often reinforced the perception that they were different.

Typically children’s incontinence wasn’t shared with the class, but the student would have a signal to let the teacher know they needed to go to the bathroom, and would be taking longer than expected.

Unfortunately, some of these signals were stigmatizing: “In one case, the Grade 5 student had to place a giant, city-issued traffic cone on her desk to say she’d be back in 10 minutes,” Julia said.

Families reported a lack of incontinence products that were discrete and effective.

The researchers note that negative stereotypes about “having a leaky body” don’t just exist in childhood. “Adults who are incontinent are less likely to have meaningful employment and romantic relationships, so there are long-term implications for children with incontinence,” Amy said.

A larger study is needed to better identify what promotes continence and social acceptance in children with spina bifida. One tool to support children may be an online group where children who are going through the same thing can share their experiences.

This small study was launched because clinicians heard frequently that children with spina bifida and incontinence were bullied.

Dr. Paige Church and Nicole Fischer were the other researchers on the team. Their findings will be presented in a poster at the Bloorview Research Institute Symposium Nov. 13 and submitted to the journal Disability and Rehabilitation.

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