Monday, August 29, 2016

Framing disability only as economic burden fuels hate

By Louise Kinross

An editorial in Japan’s Asahi Shimbun newspaper Saturday suggests that the massacre of 19 disabled adults in a Tokyo care home one month ago was not “an extraordinary case.”

Instead, the authors say, the killings by a former home employee reflect a culture that equates human value with economic productivity. “Eugenic ideology may have been deleted from official statements, but it may have yet to be wiped away from people’s thinking,” they write.

When hospitalized months prior to the attack, the murder suspect said he was attracted to the eugenics program of Nazi leader Adolf Hitler.
“There are 800 million people with disabilities worldwide,” he told a city official. “Money is spent on them. It should be used for other purposes.”

In a letter he sent to a politician he wrote: “I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.” 

One of his stated goals was to "revitalize the world economy."

The Asahi Shimbun editorial notes that disability discrimination “undeniably persists” in Japan and “[lurks] everywhere.”

Prior to the killings, another Japanese politician with a son with severe disabilities received an online comment saying she should abandon her son, in the interests of the country, because his care costs too much.

The editorial also notes that an education board official visited a school for children with special needs, then questioned why disabilities can’t be better identified prenatally. “So many people are employed,” she said. “That must be costing a great deal.”

A couple of weeks ago this WIRED article popped up on my screen: The Price of Zika? About $4 million per child.

The piece itemizes the medical and other costs of raising a child with Zika and multiple disabilities. Then a Yale scientist notes: “That’s a productivity loss for the country as a whole.”

Is there not something deeply disturbing about equating a child's life with a country's productivity loss? Remember, Hitler referred to children and adults with disabilities as “useless eaters.”

There are children living with Zika, now. How do stories like this influence the way in which these children are treated by families, health professionals and the public?

A couple of weeks ago I read this piece in The New York Times—Zika: A Formidable Enemy Attacks and Destroys Parts of Babies’ Brains (that headline no longer appears).

It reports on a study of brain scans and ultrasound pictures of 45 Brazilian babies whose mothers were infected with Zika in pregnancy.

According to one of the study authors, “the images suggest that Zika is like a formidable enemy able to do damage in three ways: keeping parts of the brain from forming normally, obstructing areas of the brain, and destroying parts of the brain after they form.”

Do we want children with Zika, who are already here, to be viewed as victims of a “war” on their brains?

In the same piece, microcephaly, a condition in which the head is smaller than usual, is described as Zika’s “sinister signature.”

Can a baby’s head be evil and treacherous? After all, we are still talking about a baby, right? 

Not a demon.

Aren't reporters supposed to avoid value-laden language?

Then I read this excellent piece on The Dos and Don'ts of Writing about the Disabled.

Under the heading First Do No Harm it says: Never equate physical, psychological or intellectual impairment with loss of personhood. People are people.

The Asahi Shimbun editorial ends with this observation: 
“Some people have conspicuous physical features. Others use different means of conversation. No human beings are totally alike. It is natural for every single individual to be different.” 

Friday, August 26, 2016

Vogue's Paralympics ad fail

By Louise Kinross

Oh dear.

I saw a tweet yesterday about how Vogue Brazil had photoshopped an amputated arm and a prosthetic leg from two Brazilian Paralympians onto fashion models as part of an ad campaign to combat low ticket sales for the Paralympics in Rio.

This struck me as bizarre and offensive.

Can you imagine an ad for Olympic athletes that features fashion model stand-ins?

What, on earth, does being an elite athlete have to do with physical appearance? Or fashion? Nothing!

While I think the idea that any of us can have a disability is a positive one, and perhaps this was the intended effect, replacing the bodies of real athletes with models sends the wrong message.

Diversity is what makes the Paralympics stand out: we watch and celebrate elite athletes with different kinds of bodies and disabilities.  

The Paralympics is one of the few times we get to see people with disabilities in mainstream media.

What message does this ad send to the child who has an amputation? That their arm is more attractive or acceptable when photoshopped onto a different body?

Other countries have produced outstanding ads to promote their Paralympic teams. The reason they work is that they're real and give the athletes the visibility they deserve.

Wednesday, August 24, 2016

Best source of rehab ideas? Parents, says research head

By Louise Kinross

Biomedical engineer Tom Chau came to Holland Bloorview the same year I did—in 1999. Tom trained computer chips to empower children who can’t speak or move in conventional ways. His devices interpreted a child’s hums, eye blinks or physiological signals and turned them into words, a mouse click or even music. For several years I had the privilege of promoting media stories about his work. In 2012 Tom took over as head of the Bloorview Research Institute. Above, members of our children's advisory test out therapeutic video games developed here.

BLOOM: Why did you get into the field of children's rehab?

Tom Chau: I used to volunteer at Riverdale Hospital. My mother created every opportunity for us to interact with people who were going through very significant challenges in their life. At the hospital there were many people with severe disabilities. I helped to feed some of the patients and sometimes my siblings and I did entertainment and played the piano. That’s where I started thinking about how technology could be used. My mother motivated us to have that consciousness and to try to be helpful where we can.

BLOOM: How has our research institute changed since you took over?

Tom Chau: First, we’ve made a number of very deliberate steps to bring clinical practice and research closer together. Our clinical investigator appointments and centres for leadership are examples. We’ve even added ‘clinical researcher integration’ as a competency on all scientists’ performance appraisals.

BLOOM: Why is that important?

Tom Chau: Researchers are trained to ask interesting academic questions, and that’s great if you have lots of money. But because our resources are so constrained, we have to make sure we’re focused on work that will have a near-term clinical impact. The questions we’re asking need to be really important ones, not just interesting or academic ones.

Another change in the research institute is our partnership with families. In large part through the hospital’s robust family leadership program, we’ve been able to jumpstart an engagement program in research. We now have families reviewing research grants before we send them out and doing consultations with researchers where they comment on their ideas.

BLOOM: What kind of changes have you seen?

Tom Chau: One area where families have really helped us is in improving the feasibility of the grant. Sometimes a researcher has an excellent and robust protocol but their idea for how to involve children and families won’t work. So families can help us improve the execution of the grant. They also help us tweak questions. We might be on to something but the question needs to be modified to make it more relevant to families.

The other thing we’ve done in the last four years is raised academic standards. The academic environment has never been as competitive in my career as it is now. Success rates for grants are so low. We needed to raise the bar internally, and today we’re so much further along in publications and external research grants. All of the scientists have stepped up.

BLOOM: What is the current focus of the research institute?

Tom Chau: One underlying thread is our focus on maximizing participation: what really matters to that child and family and can we enable that to happen? We’re not focused on increasing two points on a standardized test when that doesn’t translate into anything in the child’s real life. We have a growth strategy for our four centres of leadership: participation, child development, brain injury and innovation. And our scientists are clustered under those themes.

There’s an increasing emphasis on maximizing brain plasticity. So, for example, there’s an interest in getting children moving at a very young age as infants, even though they may not be able to move in a functional way when they grow up. Having that experience of moving through space—the sensory experience, feeling the wind, feeling the body move through space—may help to strengthen brain networks so that they’re more adaptive in learning other motor skills. We’re learning that the brain is more plastic than we thought—throughout the life span. It gets harder as you get older, but it’s still possible to rewire. And there are things we can rewire that we didn’t think we could rewire and side benefits to forming certain kinds of connections.

BLOOM: What is your role leading the institute?

Tom Chau: The most important part of my mandate has been to build up the other scientists as independent investigators—to grease the wheels or skids for them to take off by providing the resources they need to be as excellent as they can be. That might mean providing bridge funding, helping to support a student, helping them acquire instrumentation, nominating them for external awards to build their profile or editing grants to make them as competitive as possible.

BLOOM: How many students do we have in the institute?

Tom Chau: Over 120 trainees from summer students to post-doctoral students.

BLOOM: What are some of the challenges facing scientists working in pediatric rehab?

Tom Chau: There’s been a real dry spell in federal funding for health research in the last three years and the process has gotten tougher and tougher. Success rates with the Canadian Institutes of Health have never been this low and that’s really discouraging. The first budget from the Liberals already injected something like $30 million into CIHR, so things are going in the right direction, but it will take a number of years to increase the investment.

Another challenge is this small market issue. I was at a workshop in Washington two weeks ago and that was one of the first things the National Institutes of Health identified: we’re dealing with a small marketplace and people don’t like to invest in things that serve a small market. There’s no economic argument. That said, one in seven people in Canada and one in five in the U.S. have a disability, so it’s not that small.

We’re starting to think about potential secondary applications of the work we’re doing that would give us access to larger marketplaces.

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

Tom Chau: Having been a parent myself, I think that I see less of a difference between a child who might be a client here and my own children. They’re interested in the same things, like video games or movies, and may have the same worries. The good fortune I’ve had with students with significant disabilities coming through our doors has opened my eyes in terms of how similar these people are, despite the daily challenges they have. They want to achieve, they want to have friendships.

BLOOM: What have you learned from families?

Tom Chau: Over the years I’ve come to realize that parents are truly the experts. If you think about the innovations we’ve done that people think are so cool and such great ideas—the ideas came from parents. For example, our thermal switch that captures the posture of the mouth was the idea of a mother.

BLOOM: What are you most proud of in the research institute?

Tom Chau: I’m most proud of the people. The people are truly excellent. They’re very collaborative. When a student parachutes in for a couple of months they say our culture is out of this world. They say: ‘I feel so supported here, everyone was so helpful.’ I’m also proud of the fact that we have such an interdisciplinary research institute. Nowhere else will you find such an eclectic mix of disciplines united with a common mission and passion. We have folks doing technology, social science and clinical science all under one roof. All those perspectives coming to the table leads to some really creative ideas.

BLOOM: How do you find a balance between accepting disability/difference and changing it?

Tom Chau: When I first got the Canada Research Chair, we transferred the onus of change onto technology and took it off the child. It didn’t make sense that the onus of clear communication is 100 per cent on a child who is non-verbal, and not on the communication partner whatsoever.

I think what we think we can change is evolving, which goes back to the brain plasticity stuff. I think there’s potential for acquisition of abilities through exploiting brain plasticity that we didn’t know was possible.

First of all, you have to embrace your difference. Then there’s maximizing a child’s participation and an opportunity to teach the individual new skills through brain plasticity, and that’s fine. But we don’t ever want to lose sight of the uniqueness and the irreplaceable quality of the individual.

BLOOM: What are your hopes for the future?

Tom Chau: What keeps me up at night is the calls we get from families whenever there’s a story about our work. We get flooded with calls—not from other scientists—but from our families. There are calls from the U.S. and as far away as Australia. The need is huge and families are still so hopeful that one day their child will be able to express themselves. I hope that in the years I have left I’ll be able to enable access to communication for many more kids and families.

I’m also hoping that we can bring about transformational change in childhood disability. I dream of the day when we have kids on Parliament Hill telling politicians what they need and advocating for themselves. There’s still a lot of change we have to bring about in terms of attitudes.

Find out how you can participate in research at Holland Bloorview.

Monday, August 22, 2016

Why child disability research belongs in mainstream journals

By Louise Kinross

Children with disabilities are two to three times more likely to have obesity than their peers.

Yet when Holland Bloorview scientist Amy McPherson looked at a systematic review of studies about obesity prevention in kids, most excluded those with disabilities.

“If you’re testing a new way to get kids active, you may shy away from recruiting kids who physically struggle because that will affect the data,
” Amy says. “It may be less likely to show your intervention can work. But if we exclude children with disabilities from these studies, how will we develop interventions for them?”

One way to raise awareness of pediatric rehab research, which is a young field, is to send papers to general medical and clinical journals, rather than just disability journals, Amy says. But it’s not easy to get a paper accepted.

Comments from expert reviewers, who assess the rigour of a paper, often reflect a lack of understanding about the unique challenges and opportunities of disability research.

“For example, a reviewer recently suggested a colleague exclude children who are not verbal from her study, instead of relying on parent reports,” Amy says. “But these are our patients. If we’re developing interventions, we can’t cherry pick patients. We can’t inform change if we don’t take diversity into account.”

A common reviewer criticism is that a study doesn’t use outcome measures that have been tested on children with disabilities. “But most measures are developed for typical kids,” Amy says. “When we try to develop ones for our kids, we’re told the numbers are too low. We’re caught between a rock and a hard place.”

Amy notes that reviewer comments sometimes reflect the expert’s own biases. For example, she submitted a paper on a study to evaluate the effectiveness of coaching to improve diet and physical activity in boys and men with Duchenne muscular dystrophy.

One reviewer said that to ask participants to identify a “preferred future,” which was one part of the intervention, was callous, because the condition is degenerative.

“We were enrolling kids aged 10 to 19, and people with Duchenne can live till their '30s these days. Health and wellness coaching is important for everyone, especially those with a disability. We want to empower clients to identify personally meaningful goals, hopes and aspirations for the future. Whatever it looks like, young people with disabilities have a life. They deserve to get the best possible care, and we do that through research.”

One way to gain acceptance into mainstream journals is to partner with a wide variety of clinicians and researchers across disciplines, Amy says.

Getting her national, call-to-action paper on weight in children with disabilities published in Childhood Obesity—a prominent, mainstream obesity journal—is an example.

“This paper was the result of efforts from people across many disciplines, life experiences and backgrounds,
 Amy says. Collaborations like this show the broader implications that disability research can have. For example, learning how to best support kids with a wide range of abilities to lead healthy lifestyles can be useful for those working with typically developing kids who benefit from a more individualized approach. It can also support doctors who may only see one or two kids with disabilities a year and wouldn’t routinely look at the rehabilitation literature."

Amy says we need to continue advocating within the broader science community to find common ground in research on children with and without disabilities.

“Sometimes when we submit a paper to a journal or present at a conference, we get responses that question the value of doing research in kids with disabilities. Our sample sizes are small. Our kids are a different population, but there are ways to include them, or to report the data differently. As researchers, we have a shared accountability to make a difference in the lives of children with and without disabilities.

Thursday, August 18, 2016

'Without disability I don't know if I'd have discovered my sport'

By Louise Kinross

Erica Scarff, 20, is on her way to Rio next month to race a kayak in the paracanoe event as it makes its debut at the Paralympics. BLOOM talked with Erica about how she found her passion on the water after she had an amputation at age 12 to treat cancer.

BLOOM: What led up to your amputation?

Erica Scarff: I was running at gymnastics and my leg broke. I found out I had cancer and the only way to get rid of the tumour was to remove it. My whole thigh on my right leg was removed. Then my calf was attached backwards, so I had to train my brain to make my ankle function as a knee. At the time I was very involved in gymnastics. I was about to move to competing at the provincial level.

BLOOM: What was the hardest part of adapting to your new body?

Erica Scarff: For me, I was still really sick when I lost my leg so I didn’t have the energy or feel motivated to learn how to walk. Being really sick was the hardest part for me. I had the amputation in September and nine months later I finished chemo and it wasn’t until then I started to feel better. It took a long time for my scar to heal, which meant I couldn’t be fitted for a leg until about April. Also, before I even started walking, I had to train my brain to know my ankle as my knee. At first I couldn’t even move my ankle. My ankle is now functioning where my knee did.

BLOOM: What helped you keep going during this process?

Erica Scarff: I was always looking forward and thinking about what was next for me. I never really thought about the possibility of things going wrong. What helped me was I’m really into science. I wanted to be involved in understanding not just what they were doing, but why they were doing it. So I asked the doctors lots of questions and understood everything and that helped. Of course having my family around was important and my mom was always with me in the hospital.

BLOOM: What was it like when you returned to school with your prosthesis?

Erica Scarff: When I got back to school I noticed a lot of the kids were standoffish and a bit apprehensive. Maybe they just didn’t know what to say to me, so they didn’t say anything. But I still had my good friends. I knew this was something I had to do to save my life, so it didn’t bother me too much.

BLOOM: Is there anything you do that helps people feel more comfortable with your prosthesis?

Erica Scarff: I’m very open with it. If someone asks me a question I can explain it to them. That’s not necessarily something I have to address right away, or that I have to explain, unless someone asks me. I’m pretty comfortable with myself. If I make a joke about it, it helps people see ‘Oh, it’s not that big of a deal.’ Because I can feel comfortable with it, others can feel comfortable with it.

BLOOM: How hard was it to learn how to walk with your prosthesis? I’ve spoken to other people who found it incredibly difficult.

Erica Scarff: It was pretty hard. When I first started walking I couldn’t imagine every being able to walk without holding on to something. It was quite painful and I was still quite swollen from the surgery. Because walking is something that comes so naturally to most people, not having it come easily was hard. Not only was I working with a prosthetic and trying to control it as if it’s my own, but I was dealing with the fact that I’m using my own body in a way that it’s not made to be used – I was using my ankle as my knee. In my brain I had to adapt. Now I don’t even remember what it’s like to walk with two legs. For me, it’s normal.

BLOOM: How did you learn about kayaking?

Erica Scarff: I was at the prosthetics clinic at Bloorview and there was a coach there helping another patient design a leg for paddling. The other patient was a friend I knew from Bloorview. The coach asked me if I wanted to come out and try the sport. I’ve always been an athlete and I wanted to go back into sports after my leg amputation.

BLOOM: What do you love about kayaking?

Erica Scarff:
I love the outdoors, so it’s nice to enjoy the summer on the water. I really like training and the feeling of pushing your body and seeing your improvement. With paddling, it’s a very technical sport. You’re not only pushing yourself physically but it’s a mental thing too, to improve your technique. That technical side of it was really cool, because it was like gymnastics: it was about body awareness and knowing where your body is in space. So even though paddling is quite different for me, in some ways it was similar to gymnastics.

BLOOM: What was it like to become part of the Paralympian community?

Erica Scarff:
At my club there were other para athletes, but it was so cool in 2015 to go to the world championships and see these world-class para athletes and how hard they train. Some people don’t realize that we’re real athletes and really competitive. It’s real sport and a real competition. To see how seriously the other athletes took it – yet we’re still really friendly to each other – was really great.

BLOOM: Have your thoughts about disability changed as a result of having your amputation?

Erica Scarff: Having a disability, I can understand and relate to other people with disabilities more and, even though I would say my disability is considered less severe, I understand what it’s like to struggle with differences within your body.

BLOOM: What are your hopes for the future?

Erica Scarff: I’m in school studying kinesiology and I’d like to be a physiotherapist. Being in sports I have a good understanding of the body and how it moves. But also, being in the hospital and going through a lot of physio myself, it was something I watched. I thought their job looked fun, to be able to help people in that way, and something that I could be good at.

BLOOM: What advice would you give other kids with disabilities?

Erica Scarff: Sometimes I visit kids in the hospital who are going through the same thing I did. I tell them it’s going to be okay, even though when you’re going through it, in the moment, it feels really tough. 

I tell them it’s okay to have a hard time with it and struggle with it and to go through all of your emotions. In the end it’s something new: you’ll be living with your disability and it’s not the end of the world and you’ll adapt. There will be a lot of the same things in your life and then maybe you’ll find some new things. Maybe your disability could even bring you opportunities you wouldn’t have had otherwise. Without disability I don’t know if I'd have discovered my sport. So you don’t always have to look at it as a disadvantage.

Wednesday, August 17, 2016

'It was the greatest gig ever:' Bloorview teacher Shelley Neal

By Louise Kinross

After 32 years as a teacher-librarian, Shelley Neal’s life has come first circle.

“When I was a little girl in public school I remember being in Mrs. Harper’s library and reaching for a book on the shelf called Mine for Keeps,” Shelley says. “It’s about a beautiful young girl with cerebral palsy and it made me dream of being a special-education teacher.”

After seven years teaching at the Bloorview School authority, Shelley returned last year to teach in her childhood school library—the same one where she first read about a child with a disability.

This year she received the 2015 Prime Minister’s Award for Teaching Excellence for her work with students here from junior kindergarten to Grade 12, both in the class and the library. Shelley is married to Dr. Peter Rumney, physician director of Holland Bloorview’s Rehabilitation and Complex Continuing Care.

BLOOM: Why did you decide to work as a teacher-librarian with children with disabilities?

Shelley Neal: Because I love children and I love books. I want them to embrace each other and, in so doing, create a knowledge base that gives students more options in life. My love is for children and how I can engage and bring them into knowledge through books and text and literature, and, in that knowledge, create for them a freedom to think.

It’s almost a selfish thing to be in a relationship with children with different disabilities, because it’s so rich. As you bring out their giftedness, they’re bringing out your giftedness. It’s a real cycle, and out of that comes an incredible journey of relationship that empowers both people.

BLOOM: How did you work with the students in our school?

Shelley Neal: It was the greatest gig ever. First of all you have books, and books are a portal into different worlds and different thoughts, and then you have children—not children with disabilities, I just saw them as my kids. My question was ‘how do I connect these two worlds—the world of literature and books and thoughts—with children who are questioning and wondering? For the younger ones that was easy: by reading and singing and poetry and then saying: ‘I wonder, what do you wonder?’

For the older students I used text to connect them to the world and see their role and passion in the world. It doesn’t matter about disability because they are a whole person right the way they are. They still had that wonderment and we’d use the library, virtual or real, to engage them in discovering.

The middle school fiction is incredibly rich with universal themes of connection and hardship. I had children who were really hurting, coming through surgery and dealing with pain and conflict and all of that regular kid stuff like relationships. I needed to use text to create a genre to have a dialogue about that.

And then I had to figure out what to do with the reluctant guys who don’t want to read. I would use graphic novels to entice them into the text in a way that was fun and that they could glean information that was useful to their life.

One of the ways our kids learn is visually, so I also used TED Talks. One of the best was about a woman from New Orleans who painted one side of an abandoned house with chalkboard paint and wrote ‘Before I die, I want to…’ Then she left chalk there for people to share their hopes. I watched this talk with our high school children and they decided to create their own little chalk boards that they kept in the school, and that anyone could write on. I explained that they had to be sensitive because we have children who are dying with cancer, so, is there another saying we could use? They came up with ‘In my life I wish…’ I was able to get the raw materials for them and poor Peter helped them build this. Most people see him as a doctor, but I see him as a carpenter.

BLOOM: What kind of things did people write on the boards?

Shelley Neal: To sing opera on a stage, to learn to walk again, to go back to school to be with my friends. You saw some of the hurt and coming to new terms with what their body can do. But you also saw things like ‘to study about whales.’

BLOOM: What kind of changes did you see in the students you worked with?

Shelley Neal: It’s growth—growth in their understanding that they have abilities, and they have a brain to think, and learning how to connect them to deepen their understanding and knowledge. For beginning ones it’s literacy. In grades 1 to 6 they learn how to create a good question in their wonderment and to develop research skills. The older ones take those reading skills to a deeper level to empower them to read more complex text that brings up ideas.

BLOOM: What was the greatest challenge?

Shelley Neal: It was looking at each child’s ability and how to make access to information for them. So if I had a child with cerebral palsy who couldn’t hold a book, how do I allow them to access text? An incredible volunteer scanned all of our pattern books into this software called Clicker, so kids could access it through switch technology—with a click or the hummer switch or a head switch or eye gaze.

The other barrier was kids who hadn’t been successful in school. They hated reading and hated the library. I had to engage and empower them to develop a love of learning and show them reading is a skill that would help them. I used graphic novels and good Ted Talks as ways of making information accessible. Then we got into WordQ and SpeakQ, which allow a student to hear and read along with text that is too hard for them to read, but the thoughts are important because they can think really well.

BLOOM: Did you ever get frustrated because you weren’t able to find a way for some students to communicate?

Shelley Neal: The staff came together to learn what the child’s language is and how they communicate—whether a smile, an eye gaze, a motion of a hand or finger. The biggest thing for me was learning how to make my questions simple, so through a ‘yes’ or ‘no’ response, I could start to see what was going on in the child’s world.

When I was frustrated I went back to the other disciplines and said ‘here.’ That’s the richness of Holland Bloorview. A whole team is there to enable this child. So the occupational and physical therapists would problem solve on how to position a child correctly or how to make a switch that works best and which part of the body has most consistency for hitting it. This award is a representation of a team, not just me.

BLOOM: What was most rewarding?

Shelley Neal:
The greatest joy of a teacher-librarian, no matter what ability the child has, is to have them sit on your lap and engage in a story with you. That is the magic of library. When technology is too cumbersome or slow, let’s share a text together and read and question and think.

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

Shelley Neal: Yes. I went from being a ‘goody two shoes’ who wanted to learn how to help people—where it’s all about you—to a deeper understanding of the power and resilience in the children. They are whole and capable, and my job is not to make it better. My job is to come alongside and learn with them and be honoured with the journey. I learned that these are incredibly powerful, amazingly resilient people—whether they were in junior kindergarten or Grade 12—and they have a lot to teach me about life. I need to stop and listen.

BLOOM: What advice would you give parents?

Shelley Neal: To surround yourself with an incredible team, and that’s not just the professionals, but other parents of children with disabilities. Love yourself, care for yourself, and be the strongest advocate ever. This is a tiring, long journey and you need to make sure to feed yourself.

With Debbie Sutherland, one of my Bloorview school colleagues, we birthed a respite program as a way of honouring and valuing the parents. They think it’s for the kids, but it’s for the parents to reconnect for four hours, to build themselves up. And now they’re connecting with other parents of kids with disabilities to create a valuable team.

BLOOM: What is next for you?

Shelley Neal: Last year at my new school we brought in whacks of technology and this year I want to build capacity with other staff members so it becomes second nature to them. The reason for my secondment to the Bloorview school was to build a skill set that I could take back to the board. In addition to technology, I bring back a deeper understanding of inclusion.

I’ll continue on with our respite program and then I’m getting set to retire. My next job is to use my harp, my music, to bring an environment of rest and healing to the sick and the dying.

Tuesday, August 16, 2016

A therapist harnesses the power of play

By Louise Kinross

Salma Kassam landed her first job as an occupational therapist at Holland Bloorview 22 years ago and has been here ever since. She works with inpatient children who have brain injuries sustained through trauma or serious illness.

BLOOM: Why did you get into occupational therapy in children’s rehab?

Salma Kassam:
When I was a student I was one of the lucky few who had several placements at Bloorview. I did community outreach visits to nursery schools and had an inpatient placement working with the babies and young kids on Unit C. After one of my placements, I volunteered with the babies and would come and do 'cuddle time.' I fell in love. I thought the kids were amazing and the clinicians walked on water. I was so enthralled with everything we could help the children achieve. Once I discovered Bloorview, I was in it for life. It was magic.

BLOOM: Who do you work with now?

Salma Kassam: I see mostly school-age and older children who have a brain injury as a result of a motor vehicle or other accident, or from a tumour or encephalitis. We usually see kids four times a week for about 45 minutes. There are kids who are still very acutely ill, and who are learning to eat, walk and talk from the beginning again. And there are others who are more able and doing more fine motor and cognitive assessments to look at skills to get them back into the community.

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

Salma Kassam: We’re so blessed. We see amazing things. It shows the resilience of children and the importance of family support. The big difference working with children is that children are motivated by play and move on with play. They don’t harp on the negative as much as adults do.

Kids have an amazing spirit that drives them forward. It takes them time to learn that this is a safe place that’s engaging and playful and fun, and not just all of those intrusive procedures they may have had before getting here.

I remember one mother who videotaped her child during rehab. He went from having a thumbs up and down to [communicate], and not being able to stand, eat or hold a block, to walking independently, eating regularly, speaking and going back to his community. Of course he still had things to work on, but it’s nice to see the critical role we play in the early stages.

BLOOM: But not all children with brain injury have that kind of recovery. Some of them are very changed from the child they were before.

Salma Kassam:
There can be an overwhelming sense of grief and loss for the family and client, and we see that. But kids are able to get past some of it in a way that’s amazing and that’s the resiliency I’m talking about. They still want to do the things they used to do, and they find ways to do things. Not everyone makes the same recovery. There are children we couldn’t help as much as we would have liked, as well as ones who defy expectations. There are so many things you can’t predict. Children who recover physically but have invisible cognitive impairments or personality changes face different challenges in the real world.

BLOOM: Because everyone sees the same person on the outside and assumes they have fully recovered.

Salma Kassam: Exactly. There are also kids who look very impaired physically and have cognitive strengths. The range of ability is so broad that we really have to look at the uniqueness of each individual—at their strengths and limitations—in the same way we would for any of us. We have to shed our preconceived notions when we see someone with a certain presentation.

BLOOM: What’s the most challenging part of your job?

Salma Kassam: I think time. We want to be able to spend the quality of time with each client and we try to make the most of every minute. But there’s a lot of things behind the scenes: documentation, communication with community people or accessing resources or getting information about equipment. And other demands to participate in education, as a teaching hospital. So prioritizing and managing and helping each family to the best of your capability is the challenge.

BLOOM: What about those times when a client doesn’t make the progress hoped for?

Salma Kassam: The brain is unpredictable and it heals in its own way, and we can only do what the brain will allow. I may try the same intervention with two similar clients and one may respond to it and the other not. It’s outside our control. It can be very difficult when two families with similar children have completely different experiences in rehab, and it’s not necessarily to do with the clinician but with the client’s type of brain recovery.

BLOOM: How do you deal with that?

Salma Kassam:
I have a reputation for crying. I do sometimes wear my emotions on my sleeve. I celebrate with families and I grieve with families. I think we can still maintain a professional relationship without giving away our human qualities. I want to support the parent. We have a lot of things in place for families, but we often need to remind parents that they need to look after themselves and have an opportunity to express their grief and loss and their joy.

BLOOM: What is most rewarding about your job?

Salma Kassam: It’s always the kids. They always bring sunshine to my day. In so many ways I learn something every day and I help someone every day and that’s a pretty good life.

BLOOM: What advice would you give parents?

Salma Kassam:
Be patient. It’s hard. Listen and learn from experts, but recognize that you’re an expert in your child, so share what you know. Hope is important and acceptance is important. Be there as much as you can, but also, sometimes you can help your kid by not helping them, which allows them to grow.

BLOOM: What advice would you give a therapist starting out on the unit?

Salma Kassam: There are so many skilled clinicians here who I’ve learned from and who continue to inspire me. So take the expertise of those people who’ve done this for a lifetime. You can learn so much from the people around you and from the kids.

Sometimes, as adults, we’re very product oriented and focused on the end result. Children are about the process. They learn from the act of doing and if the product isn’t perfect, it’s okay. Remember that in the end your therapy session with a child may not be perfect, but you’ve both learned from the session and that’s the important thing.

Take care of yourself and know when to ask for help. If you’re overwhelmed either physically or emotionally, go to occupational health or go to your family doctor or go to your massage therapist or whatever it takes to get you through that day. We do have days where our body or mind gives up.

Value your time outside of work—whether that’s recreational opportunities or family or whatever makes you happy and joyful. Brain injury can happen to anyone, at any time, so appreciate every day the things you can do. And wear good shoes.

You mean comfortable ones.

Salma Kassam.
Yes. It's a very busy place.

Friday, August 12, 2016

When there are no medical answers

By Louise Kinross

"This is not my fault."

That was the key message I picked up on resilience when I read this Facebook post by Lean In author Sheryl Sandberg after her husband died suddenly and tragically last year. Adam Grant "told me to ban the word 'sorry,'" Sheryl writes. "To tell myself over and over, This is not my fault." 

I was trying to apply it to how I felt after a visit with my son to a surgeon didn't go as I had hoped. My son's curved spine, which developed suddenly over the last year, is worse but the surgeon doesn't want to operate. Because it's high up, if he straightens it it will move higher up, meaning he would probably have to fuse his spine up the neck to correct it, so my son would lose all movement there. There are also serious, serious risks.

But there is no way to prevent the curve from worsening. So when I got out my little blue leather notebook, with the gold tinted paper, and read through the prevention strategies I hoped might work, they were all discounted.

No, correcting his leg length difference caused by a previous surgery wouldn't help because it's not the main cause. No, wearing a brace wouldn't be useful in this case, even though it's helpful when teens develop idiopathic scoliosis. In our case, it would just make our son's muscles weaker. What about if he wore it at night? No.

No, there isn't a different kind of surgery that could be done. And no, even though there was a cheery picture on the wall showing a teenaged girl before and after her fusion surgery for idiopathic scoliosis, that was not the same beast we were dealing with. It didn't have any relevance to our case.

He would do the surgery if he thought he could help my son, but he didn't. He couldn't promise that it wouldn't get worse, and I didn't have the nerve to ask "Will it get worse?"

Which left me back at: "What are we going to do?" I started scanning the pages in my notebook again. But all I could see was #1, the leg-length difference question. I knew he'd said it wouldn't help, but I couldn't stop myself and asked again. 

I was in desperate mother mode.

I never thought that at age 22 my son would be facing a new health crisis. For some reason, when he was little, I imagined we would have everything uncovered and figured out, as well as was possible, by then. 

I'm angry at his syndrome, a bone disorder, angry at the limits of medicine and angry at my limits as a mother. 

"There wasn't anything I could have done to prevent this, was there?" I ask his dad. I've been trying to get someone in the adult system to see him about his spine since last year. 

Then I remember that when he had his hip surgery one of the surgical fellows told me he had soft bones, like an elderly person. Other people with this syndrome have developed a curved spine, in spite of what their parents did, or didn't, do.

I hate it when he has a bad pain day and moans and I don't have a good answer when he asks when it will be better. 

I tell myself I have to be flexible. I have to adapt. They will see him again in a year. In the meantime, I have to get used to not knowing what is going to happen, and not being able to do anything about it.

When I want a break, I can walk outside and sit under these giant trees in Spiral Garden, the ravine area that is an arts camp at Holland Bloorview. 

"It's not my fault."

Thursday, August 11, 2016

A new way of teaching health students about genetic conditions

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

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

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

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

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

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

Monday, August 8, 2016

Grandma gets UK retailer to adapt clothes for easy access

By Rita Kutt

My grandson Caleb had a very difficult start to life, which included seizures.

Last year when he turned three, his mum Zoe and I started looking for clothes to accommodate his feeding tube and nappies. Until then, we’d been able to buy clothes from the high street stores and supermarkets here in England.

To my dismay, after looking in stores and online, I found nothing available for his age and size. I tried parenting websites for advice, but soon realized that we could only buy them from specialty catalogues.

Parents and carers told me they had to buy from the United States, as even with postage it still worked out cheaper than buying from the local catalogues. Others were using expensive dressmakers to alter their children’s popper vests and sleeping suits by adding material so that they would still fit.

Disability catalogues charge more because their products are specially made. The cost of a popper or snap vest was about $30 in the catalogue, compared with the $2 vests (up to size 3) we could buy in our regular stores.

How would my family afford this new clothing? Caleb’s mum had given up work to care for him. And the family had to pay for private physiotherapy for Caleb, who is still not able to crawl, sit, stand, walk or even have full control of his head. The cost of this new clothing was a huge worry.

Why couldn’t the less expensive clothing, now available up to size 3, be made a little bit bigger, with extra material?

I decided to campaign for more affordable clothing in larger sizes and asked Marks and Spencer if they would help. I chose them because they're a global company and that meant more children and families would benefit. They have dedicated websites in Australia, New Zealand, Canada and the United States, and they deliver free when you spend $50. They also deliver to over 30 countries at varying cost. Marks and Spencer have a great reputation for quality and are a respected company that started out in Leeds, which is my home town. I thought if they were able to order them by the thousand, then surely they would be priced lower.

I wrote to their customer services’ team, and they promised to pass my e-mail onto their buyers. They quickly came back to me and said that they were interested in my proposal and were hopeful they could help.

Soon they were sending sample suits for Caleb to try. My daughter-in-law Zoe has been able to give very positive feedback and has made suggestions about how the clothing can be tweaked. For example, the neck area was a little too large in one item, so they made the opening smaller.

Zoe asked if they could also do styles for older children and Marks and Spencer got in touch with the disability charity Scope UK for advice from families. Scope arranged for parents from their online community to trial sample sizes with their children and send in feedback too, which has all helped to shape the products.

The new range of clothing, launched in February, is more than I ever hoped for!

Initially I just asked for popper vests for older children. Marks and Spencer have gone above and beyond by also making sleeping suits, long and short sleeve items, all-in-ones, and all with easy accessibility for nappy changing and tube feeding. Two of the items have snaps across the tummy for a feeding tube. They are made for children aged 3 to 8 at the moment, with the age range being extended to 16 later this year.

The older children’s styles will be age-appropriate. The clothing is great quality and affordable, and ranges in price from $8 to $15.

I have to admit that a month or two after contacting Marks and Spencer, I had a little wobble and thought, “What if other families don’t feel the need for these clothes?” I asked the company if I could tell people on my Facebook page about what was happening and they said yes.

In a few days I had over 30,000 responses! There were friend requests from strangers and messages from around the world, including India, Spain, Portugal, New Zealand, Australia, the United States, Indonesia and Ireland. All wonderful messages of encouragement that made me realize I had done the right thing, and that thousands of children and their carers would benefit.

People also shared ideas of their own, and it convinced me that we should be pushing ideas to other businesses. After all, if we don’t let them know what’s needed, then how are they going to help?

I decided to set up a new facebook Group entitled Marks and Spencer and Me: Special Needs Clothing so that everyone could put forward their thoughts. We have over 6,000 members and are still growing. Anyone wishing to be kept updated please join. The retailer is in the process of producing more age-appropriate garments for youth up to age 16 and are making some improvements to the existing line.

We're hopeful that this much more affordable clothing for Caleb will be a weight off his parents’ minds, and will help them continue with the private physiotherapy he so needs. Caleb has profound and complex needs. I know lots of families will have their own individual expenses to accommodate their children’s needs. So this should also help them too.

The attention to detail and quality of clothing is what Marks and Spencer do best. This new adapted line has been so popular that many items have sold out, but they’re being restocked quickly. The demand has been unprecedented, which is heart-warming for me.

Thank you Marks and Spencer, for making this happen.

I am one proud Grandma.

That's not a problem. It's a power!

By Megan Jones

When acting, Jessica Thom never stays on script. In fact, she’s neurologically incapable of it: the London, U.K.-based performer has lived with Tourette syndrome for decades. Her tics cause her to experience muscles spasms and to randomly speak words thousands of times a day. Onstage, this means nothing goes quite as planned.

In 2014, Jessica began performing Backstage in Biscuitland with actress Jess Mabel Jones. The play uses puppets, props and audience participation to celebrate and demystify Tourette’s. Since then, it’s been performed in the U.S., Canada, Norway and Bosnia, among other places.

The show is just one facet of Touretteshero, a project that the 36-year-old co-founded with longtime friend Matthew Pountney. On her Touretteshero blog, Jessica writes about her life with the neurological condition and catalogues her tics, inviting people to make artwork—images or poems or music—in response.

Here, she weighs in on growing up with special needs, making theatre more inclusive, and why laughter is an activist’s most powerful tool.

BLOOM: Backstage in Biscuitland is random, unconventional and sometimes quite absurd. How did the play come to be?

Jessica Thom: The roots of the show are in the difficult experiences I’ve had accessing live performance. In 2011, for example, when I was attending a comedy show, I was asked to move to a sound booth because of the noises I was making. We’d met with the performer beforehand, he’d explained my Tourette’s to the audience, but despite all that planning, I got singled out.

As I sobbed in this sound booth, I promised myself I would never go to the theatre again. It felt like an experience that I couldn't access. But I was lucky to have friends and family who showed me there was another way. So eventually I decided to take to the stage—the only seat in the house I wouldn’t be asked to leave.

BLOOM: In which ways does the play fit into your broader project, called Touretteshero?

Jessica Thom: Like the play, the purpose of the site is to share my experiences with Tourette’s, and to celebrate the creativity and humour of the condition. We’re interested in drawing attention to the invisible barriers that exist within our society that prevent people from being included. Lots of exclusion happens because people don't experience difference. If something doesn’t directly affect your life, it can be easy not to give it much thought. That’s why disabled people need to speak out about barriers.

BLOOM: You’ve spoken in the past about the need for relaxed performances. How does Backstage in Biscuitland fit that model?

Jessica Thom:
Backstage in Biscuitland is also about our belief that making art inclusive makes it better art. All our performances are relaxed performances—they welcome people who might find it difficult to follow conventional theatre etiquette. People are free to move in and out. We also build audio description into the dialogue for people who can’t physically see the set, and try to offer captioned or interpretive performances whenever possible.

Finally, before a show, audience members can participate in 'touch tours.' We allow people to touch the props we use onstage. It’s useful for someone who is blind, but also for someone who’s on the autism spectrum.

BLOOM: You often say that incorporating disability will enhance the theatre-going experience? Why is that?

Jessica Thom:
Being inclusive will make theatre experiences more dynamic for everybody. If you take my show as an example, every staging is different because I’m literally incapable of doing the same show twice. Jess Mabel Jones’s job is to keep us on track and not let my tics make the play an hour of rambling about lampposts. Left to my own devices I probably would. But my tics keep the show interesting.

BLOOM: You’ve got some interesting outfits as well. What’s with the superhero persona?

Jessica Thom: The persona is a way to reframe my tics not as my problem but as my power. They let me do things that neurotypical people can’t. I’m constantly colliding strange ideas. It took me a long time, but I was eventually able to see my unusual neurology as a valuable source of creativity.

BLOOM: Right, let’s talk about that process. What was it like to grow up with Tourette’s?

Jessica Thom:
When I was younger my tics were much less noticeable to other people. But they were there. At school I would save tics up and then wriggle about frantically in the bathroom. Or sit on my arms and legs to give myself pins and needles just so I could feel a different sensation in my body. As a kid, I didn't have much space to talk about my disabilities. There was a lot about them I didn’t understand. I thought I was bad or evil.

Generally though, I was well-supported, and I can still vividly remember moments when adults were understanding when they could have responded poorly. When I was very young, I whipped a basketball in my teacher’s face during gym class. It was an uncontrollable action. He ordered me out of the room straight away, but as soon as I told him that I hadn’t meant to throw the ball, he accepted my reasoning and let me rejoin the class. I thought that was an incredibly brave decision.

BLOOM: As a child with a disability how did it make you feel to be listened to?

Jessica Thom: It made what was a frightening situation manageable. I think children have an innate openness to being inclusive of different types of people. It’s important that that’s nurtured. We adults can’t let our discomfort be transferred onto the young people we’re raising or supporting.

BLOOM: So kids really are the future then.

Jessica Thom:
A few days ago I wrote about my friend’s daughter, Ruby. Her mom had told me that at bedtime recently, Ruby discussed how parks could be built to better suit kids who used wheelchairs. She naturally understood the social model of disability—that we need to focus on changing environments, not people—at age four. If a preschooler is able to brainstorm ways for everyone to be able to participate, why on earth do I spend so much time explaining this concept to adults?

BLOOM: How did you get to a point where you felt you could accept and even celebrate your tics? I think many young people struggle with that.

Jessica Thom:
As my tics started to have an increasing impact on my daily life I found myself having more conversation about Tourette’s with my friends and family. During one conversation with Matthew, he described my tics as a 'crazy language-generating machine.' That idea really captured my imagination. I was able to see value and creative potential where I’d only ever seen something to be ignored, minimized and dismissed. A conversation has the potential to spark change.

BLOOM: But that doesn’t mean there aren't still challenges.

Jessica Thom: Of course not. My tics now affect my ability to walk, and I use a wheelchair most of the time. That means I have a simple, visible disability. When I was walking independently my tics were visible but they were often interpreted as me being drunk or dangerous, and people often responded with fear. These days, people are more likely to be supportive or empathetic. But they’re also more likely to behave in a way that’s condescending—they make assumptions about my ability to work or think independently.

BLOOM: I’ve read online that you say the word biscuit 16,000 times a day. Is that true?

Jessica Thom: Yes! We didn't count for a whole day, obviously. Years ago my brother-in-law counted how many times I said biscuit over five minutes and then multiplied it. It gave us a good laugh.

BLOOM: Speaking of which, a big part of your show is finding humour in your tics. What makes self-deprecation a valuable tool?

Jessica Thom: Laughter can make us feel empathy; it can make difficult situations more manageable. My life would be innately more challenging if I didn't find humour in some situation.

Often, people are afraid of using jokes, especially linked to disability. But I think it’s important to consider where laughter sits. There are so many jokes about Tourette’s out there anyway. I remember seeing a video of somebody pretending to have the condition. It had 30 million views. I just thought, “Wow 30 million people are really missing out. Because the reality of life with Tourette’s is much funnier than this.”

BLOOM: And people are probably more receptive to your message if they feel like they’re in on the joke.

Jessica Thom: Right. I think laughter and humour can be used to get people to think about things they might find difficult. We tend to switch off if we think we’re getting a lecture.

BLOOM: What advice do you have for kids with disabilities who might be feeling isolated?

Jessica Thom: Learn about the social model of disability as soon as you can. I don't think there’s any age where a child is too young to be introduced to the idea that it’s not about fixing people it’s about fixing environments. Learning I have the power to change my environment to fit my needs has been an important part of my journey as a person with a disability.

BLOOM: And what about parents?

Jessica Thom: Help your kids build positive memories—they can be protective. We focus on events for young people because by building positive memories, children have something to draw on if times get tough. Building a resilience in children with disabilities is an act of resistance. If kids with disabilities have high expectations for themselves and for others, we’ll have a much more inclusive society. Damaged confidence is much easier to prevent than it is to repair.

Photos by James Lyndsay