What are your fave disability blogs and websites?

What are your favourite blogs and websites on parenting, disability and health?

Please post in the comments your "go-to" sites!

We want to update BLOOM's very outdated Blogs of Interest, and expand it to include web sites.

Many of you told us your favourites in last summer's BLOOM survey, and we will include these. But we'd love to get suggestions from a much broader audience. They can be Canadian or international.

1, 2, 3, post your names and links below!

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'Merrywood' sparked my passion to work in rehab

By Meaghan Walker

People who say Disney World is the most magical place on earth have clearly never been to Merrywood Easter Seals camp.

Merrywood looks like any other summer camp—with sailboats, canoes, kayaks, arts, music and drama, a dining hall, and cabins.

But a few simple changes transform this beautiful plot of land in Perth, Ont. into an accessible summer camp for children and youth with physical disabilities.

For example, the canoes have beanbags and lawn chairs available for kids who need additional support. The sailboats have deep seats and can’t be tipped by winds. The pool has chairs that can be lifted in and out of the water with a rotating handle. The dining hall has pureed options and adapted cutlery. And the paths connecting all programs and cabins are paved with smooth cement.

When I was 16, my English teacher suggested I spend a summer working at Merrywood.

I thought it would be a summer of learning new skills and expanding my knowledge about different abilities. But it gave me so much more. It became a place I loved like a second home and ignited my passion to study Rehabilitation Sciences this fall.

I’ve now spent four summers at Merrywood—working as a counsellor, cabin leader and leader in training programmer. Each summer I meet campers who teach me more than I could ever learn at home.

My first days at camp I remember wondering if I’d be able to change diapers and shower and feed campers. I was concerned that I would say the wrong things—such as “say your name to the group” to a camper who doesn’t speak, or “stand over there” to a child who may not stand. These fears vanished the moment my first camper rolled in.

Providing care, feeding and communicating in different ways is second nature to the staff at Merrywood. Changing diapers becomes something as natural as tying shoelaces. Feeding someone while eating your own meal is the norm.

We naturally ask questions that offer the camper many ways of providing answers (whether this is asking a yes/no question to a camper who moves their head as a response to each, or asking questions they can answer with pictures on a voice device or photo sheet).

Every person who works or volunteers at Merrywood is changed by it. As staff we receive tremendous training, learn so many skills and meet campers who push us to be innovative in the ways we adapt programs to suit different abilities.

Merrywood is one of the only places that’s fully accessible for campers. Youth are seen for their abilities and personalities, not their disabilities. Campers often say it’s the only place in the world where they can do everything and feel “normal.” Camp is a place of firsts, where youth try activities they can’t access at home.

For me, watching the interactions between campers is the most special part of camp. For example, one year I heard two young men with Duchenne muscular dystrophy talking.

The younger boy eagerly asked the older one, who was about 18, questions about how it felt to lose different physical functions over time.

The older boy answered the questions with patience, optimism and reassurance. This simple conversation has forever stood out in my mind as one of the many benefits of Merrywood.

On departure day parents often tell us that their child is so happy at camp that they count down the days all year. Parents express their confidence in the care provided and are grateful that their child has a place where disability isn’t a factor in taking part and belonging.

Merrywood changes lives every day for campers, staff and parents. The camp provides children and youth between seven and 26 with a fully accessible, inclusive oasis where they can forget about the challenges they face and enjoy camp the way any child should be able to.

Meaghan Walker was a student in the Ward Family Summer Student Research Program at Holland Bloorview this summer.

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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.” 

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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.

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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.

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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.”

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'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.

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