Wednesday, April 18, 2018

Christa Couture sees beauty in resilience

Photos by Jen Squires

By Louise Kinross

I was scrolling through Twitter when my eyes locked on an image of a pregnant woman. Taken from the side, her belly was the centre of the photo, and her closest leg had a brilliant floral pattern on it that matched her cropped shirt. It was a prosthetic leg. I clicked on the link to find this CBC piece by Canadian folk singer and songwriter Christa Couture: I Couldn’t Find Any Disability Maternity Photos, So I Created My Own.

In the article, Christa writes: “I struggled to imagine my own maternity photos when I couldn’t find any examples of them with a body like mine…There aren't a ton of one-legged people out there, true, but it wasn’t just that I didn’t see any amputees in maternity photos—I didn’t see any kind of disability. At all. Or really any other body differences.” So she did a shoot with photographer Jen Squires.

Christa's leg was amputated at age 13 due to bone cancer. She's experienced the loss of two sons: Emmett and Ford. “It took time to be open to a pregnancy," she told me. “I knew it would be hard because I have a disability, and because it would bring up stuff around Emmett and Ford that I probably wouldn’t have to confront if I didn’t go through another pregnancy. But I kept coming back to how much I wanted it, and I wanted so badly for it to be different. That desire overpowered the fear.”

We spoke about her amputation and why she hopes the next person who does a search for 'disability and pregnancy' finds her photos.

BLOOM: What was it like as a young teen to experience having your leg amputated?

Christa Couture: I was first diagnosed with Ewing's sarcoma when I was 11. I had chemotherapy and radiotherapy and went into remission. Then, just before my 13th birthday, the pain came back. Very quickly, a couple of days after they did a biopsy, my leg was amputated.

When people ask me about what it was like, I tell them ‘I don’t know what it’s like not to have cancer.’ Not only was it normal for me, but I was spending a lot of time in hospital where I was surrounded by other kids with cancer. As much as that’s a painful reality and now, as an adult, I’m like ‘Oh my God, we were so small,’ at the time, we didn’t have that perspective. It was just our world.

I had cancer when we lived in Edmonton. I have great memories of nurses who were so fun and made the experience as good as it could be. It was hard, because I was really sick, but it was so normal. It wasn’t until my later teens that I came to terms with the fact that it was really difficult at the time. 

When I was in high school with a thousand other people, none of whom have cancer, I realized I’m kind of unusual. This is an extraordinary experience. I felt separate, especially after losing my leg and being in the regular world, knowing it wasn’t normal, and everyone was going to stare and ask me what happened.

I didn’t even recognize it as permanent until I was in my late teens—that I have one leg and as I move toward being a young adult, things were physically harder. Like finding a first job when you can’t be on your feet all day.

In some ways it was like an exaggerated adolescence. It’s already this time of change, and becoming aware of your body, and for me it was a dramatic, radical change, and I had to learn how to walk again.

BLOOM: I’ve seen other kids who learn how to walk with prostheses here, and it’s always struck me how hard it is. I think there’s a public perception that you just put on the technology and get up and go.

Christa Couture: People don’t realize how challenging a prosthesis is, because they see what looks like a limb, and they think it must operate like a limb. But this is not a limb that works like any other part of my body. It’s a device that doesn’t come naturally.

I had to program my brain to use this equipment, and it was a long, slow process. It was like taking my first steps again. It wasn’t until some point in my 20s when I felt like I could function pretty easily. It’s a huge learning curve, and it’s not at all like having two legs. As someone who has an acquired disability, I remember what it was like before, and it’s completely different.

I don’t know if people expect it to be easy because they see Paralympic athletes.

BLOOM: Elite athletes.

Christa Couture: We don’t tend to see people who are using prosthetics in an ordinary, daily way. The reality is that it’s challenging and slow and it means not doing a lot in a day physically.

BLOOM: What advice would you give a child who's at the beginning part of rehab?

Christa Couture: I would say it gets easier, but it takes a long time. There’s good cause to be hopeful, and to know that your body will get stronger and will adapt and will learn. But it’s not quick, and it’s realistically difficult to do. Eventually everything is possible, but you’re going to be doing it a little differently.

Now, I love the way things are different for me. At this point, the experience of losing my leg and having a disability feels like I’ve been to a country most people haven’t been to, and I have this perspective which is so rare and feels precious. It feels amazing that I’ve gotten to know something about myself that many don’t—as far as resilience and adaptation and adjusting. There’s ways that it’s harder and it’s a major bummer. And then you get used to it, and you get good at it.

BLOOM: I read that your current leg has a micro-processor in the knee?

Christa Couture: My folk music community raised $25,000 to buy a knee that costs $40,000, and is not covered by public health care. Then I got this floral thing done to make it decorative.

Because there was media coverage, a lot of people knew about the knee, and they thought she’s now part robot. People would say ‘Is everything better now?’ And I had to tell people it’s a little better, but I can’t leap over buildings. It’s not a super power.

What is better is that I fall less often and I have better stability when walking on rough terrain. That for me is a huge difference. But it’s not a super computer and it’s not like I can charge my iphone with it.

The things I can do now, for anyone with two legs, are really basic.

BLOOM: The design on your leg is gorgeous. It looks like it’s painted.

Christa Couture: It’s actually a fabric that’s laminated. It’s a linen upholstery fabric that I found in this ritzy furniture store and I really loved the design. I had seen hand-painted prostheses. There’s a company in London called the Alternative Limb Project that does them, and they’re very artful. I showed a picture to my clinic and asked ‘What’s the affordable version?’

BLOOM: We laminate all kinds of things here on prostheses for kids, like their favourite characters or sports teams.

I read an essay that you wrote about your children Emmet and Ford, who died. You wrote about how challenging it was to know how to respond to people when they ask you if you have kids.  

I also read a piece where you shared your favourite books on loss, and Ian Brown’s The Boy In The Moon was there. You wrote that you read it while you were at Ford’s bedside in the hospital. How did you find the courage to get pregnant after these experiences?

Christa Couture: They were such painful experiences that it took a long time to be open to trying. I knew being pregnant I would be terrified. 

Losing one child is something, but losing two doesn’t happen that often. People kept saying ‘It’s so rare,” but for me it was 100 per cent of the time. With Emmett it was because of complications of labour and with Ford, he had a rare heart defect that's not genetic. Then I met other bereaved parents at a group at Canucks Place in Vancouver, and I learned about every way that a child could die.

I knew the best-case scenario would be what I have now, which is a healthy child at home.

But I knew it would be hard because I have a disability, and because it would bring up stuff around Emmett and Ford that I probably wouldn’t have to confront if I didn’t go through another pregnancy. But I kept coming back to how much I wanted it, and I wanted so badly for it to be different. That desire overpowered the fear.

My son Ford lived most of his life in an intensive care unit. He had hypoplastic left heart syndrome. Most of his life he was in hospital, and much of that time he was intubated and had multiple surgeries. I wanted so much for this pregnancy to be okay. I don’t know how I would survive if something happened to my daughter, but we never really know what we’re capable of.

BLOOM: You said on Metro Morning that when you searched for other maternity photos of moms with disabilities online, you didn’t find them. 

Christa Couture: It was discouraging. Especially because I was considering being a single parent. There were lots of stories about single parenting, and about single moms by choice, but never did I ever see any of those people with disabilities. Even though intellectually I thought surely disabled people are parenting, when I couldn’t find them, I thought maybe this is a bad idea. Maybe they all realized it was a bad idea, and I’m fooling myself.

BLOOM: What was so interesting about your CBC piece was that you said it was the first time you’d taken your prosthesis off for a photo.

Christa Couture: That was really significant. I’d wanted to do it for a few years. I wanted to do it for myself, and to confront my conflict about it.

It felt vulnerable because my leg is scarred and it’s—whatever shape it is. I think people see my prosthesis with the flowers and hear about the micro-processor and think she’s part robot and that’s cool. They see a cyborg and think it’s edgy and a fun thing to do. I was worried in taking it off that I would lose that—that people were going to conjure more deformity or injury or a lack.

But I wanted to make it public, because any time I see someone share their difference—it doesn’t have to be a missing limb—I feel more empowered in my own difference. I knew people might do a double take, because they’ve only been fed images of certain bodies. But we need to normalize these differences.

There were two women who really inspired me to think I could do this. One is Alexis Hillyard with her cooking show Stump Kitchen. She uses her arm with a stump to clean bowls and get peanut butter out of jars. CBC Parents has created a kid-friendly version of it.

The other was Kaleigh Trace, who wrote Hot, Wet and Shaking. She was in a car accident when she was a child and had a spinal-cord injury. I loved reading about how she figured things out. She wrote about crawling around, and being so amazed when she figured out that she could carry stuff in her teeth.

It was those two women who made me believe that maybe I could see myself as someone cool.

Thursday, April 12, 2018

A brother unites a family and inspires research

By Louise Kinross

Five siblings have created research scholarships in occupational science and therapy at the University of Toronto in honour of their brother Peter Rappolt. Peter (bottom centre), the youngest in the family at 57, has a developmental disability and severe, chronic mental illness. His brothers and sisters have worked together for decades to advocate for him in the health system.

The Peter Rappolt Family Scholarships for Research in Occupational Performance and Wellbeing are aimed at improving the lives of people with complex, intractable conditions. Peter’s sister Marg sits on Holland Bloorview’s board and chairs its business and audit committee. BLOOM spoke with Peter’s sister Susan, who is chair of U of T’s Department of Occupational Science and Occupational Therapy, about her experiences as a sibling.

BLOOM: It’s quite unusual that there would be five siblings who are all able to support their brother. Where does Peter currently live, and how do the five of you stay in contact with Peter and each other?

Susan Rappolt:
Peter is the youngest of the six of us and lives in Cambridge in a long-term care facility with a very high level of care. We all live in southern Ontario and are in reasonably close proximity. My sisters Marg and Gail are power of attorney for care and finances, and they’re frontline contacts with the nursing and support staff. We’ve hired workers to come in and take Peter out when he’s well enough to go for a drive and do activities.

My siblings are retired or semi-retired, and I’m the only one working full-time, so I visit on the weekends. We all text and e-mail after a visit with Pete, to keep everyone up to date on any swings in his abilities or mood.

This morning Marg visited and because Pete really likes picnics, Marg took him for an indoor picnic, because it was snowing. He’s had a slump these past few weeks and been pretty frail and psychotic, and in pain, so it was nice to hear that he’s feeling better. Marg sent out a photo of him eating lemon meringue pie and smiling.

BLOOM: How does Peter's mental illness affect him on a daily basis?

Susan Rappolt:
Pete’s had probably every diagnosis you can imagine. He is paranoid and hallucinates and is fearful and very vulnerable to psychotic visual and auditory images when he’s not well. The intensity and frequency of his psychosis has increased over the past 10 years. More often than not, he’s engaging with people who are villainous and threatening him. They’ve tried every medication, and nothing has been successful. It’s really hard to see him suffering. Sometimes we go in and he’ll see us, and he can’t pull himself out of it, but if I give him a hug he’ll start crying on my shoulder.

BLOOM: When did his mental illness start?

Susan Rappolt:
As a teenager and young adult. His primary diagnosis was developmental delay. So he has a dual diagnosis.

Pete has many cognitive strengths. He gets and makes jokes, and he has an amazing sensitivity and insight into human dynamics. He’s way more perceptive than other people in the room about how you’re feeling, and about how what someone says may affect others. He loves sports. In better days, he knew the names of hockey players and teams and followed hockey and baseball. When our kids were little he liked to do stuff with them and we’d have family gatherings. We’d go to the local diamond and the kids and Uncle Pete would play baseball.

BLOOM: Was your decision to become an occupational therapist influenced by Peter?

Susan Rappolt:
Yes, it really was. When I was 11 or 12 and Peter was six, I recognized his potential to do stuff that wasn’t being realized because he was very much protected. And he was smart enough to milk it. It did influence my thinking, and when I learned about the discipline of occupational therapy, it seemed like an obvious fit.

BLOOM: I read a piece on the U of T website where you talked about having to advocate for Peter in hospital when he wasn’t getting appropriate care.

Susan Rappolt:
Yes, that particular incident was horrible and it was outstanding, because we hadn’t faced that kind of discrimination in the health system otherwise. Pete wasn’t doing well and had an incident that looked like a small stroke. We got a message that he was on the acute-care side of the hospital and was being monitored, and would need to be kept quiet for a couple of days.

My sister and I went in and there was a nurse sitting there recording something, which I thought was odd. I asked ‘Is Pete eating? Is he drinking? How are things working here?’ And she said ‘no’ and put her eyes down. ‘So where’s the IV?’ I said. She said ‘No, there’s no IV.’ I knew what was happening then. ‘Okay, you start the IV right now,’ I said. No one had given a do not resuscitate order.

I know that our situation is unique in that we siblings probably have close to 10 post-secondary degrees, and lots of skill sets, and we all speak English. It’s so different for a single mom living in poverty. We’ve very lucky that we have all of these skills and I work in health care. You have to know the system to ask the right questions to get the right care.

BLOOM: How do you cope with seeing Peter distraught, and not being able to find something to treat his mental illness?

Susan Rappolt:
It’s really hard to see him suffer. We’ve been very lucky with our experience of the nursing care he receives and the community care workers. They’re lovely people who are so talented and skilled in trying to support him and soothe him. It is heartbreaking. But it’s not a sudden tragedy. We’ve watched his decline over the last years, and are coming to terms with the doctor’s projection that he would see a physical decline and probably an early death.

Although it’s not a good situation, we have turned over many stones and pushed as hard—and in as many places—as we can, so we know there aren’t other answers. We’re really dealing with palliation now.

BLOOM: Why did you decide to fund the scholarships in Peter’s name?

Susan Rappolt:
As a family, we know we can’t make big changes to Pete’s quality of life because of his intractable mental health condition. So we’re focused on providing him with whatever pleasure and support we can.

The focus of the awards is research to promote quality of life in individuals who have chronic, declining and, often, very complex needs. How can we bring joy or alleviate pain in a life that is otherwise pretty miserable?

There’s nothing more medicine can do, but perhaps we can do compensatory things with assistive technology, or social interventions, or by modifying an activity so a person can participate. Often it takes an occupational lens to parse that out. How can we intervene with the person, the occupation or the environment to help someone reach their goals and be happier?

BLOOM: I understand the first gift will fund a scholarship for a PhD student at the Rehabilitation Sciences Institute?

Susan Rappolt: Yes. The PhD part is endowed, and our first student should receive that in September. Our scientists in the RSI will supervise that student in the doctoral stream. The second gift creates a research fund for projects by students doing a master of science in occupational therapy.  
BLOOM: What advice would you offer other siblings who perhaps live at home with their parents, but are concerned about how they may support their brother or sister in the future?

Susan Rappolt:
It’s a very challenging scenario, and I don’t know of any families that experience it differently. Especially if the person is still residing at home, the family caregivers need support, in the same way that we’ve developed caregiver protocols in palliative care and stroke. I don’t think the same kind of attention has been paid to family caregivers of individuals with a dual diagnosis, like Peter. I’d like to raise awareness of this issue.

Tuesday, April 10, 2018

After a near drowning, a teen accepts she's 'a different person'

By Louise Kinross

Recently, Holland Bloorview family therapist Caron Gan sent me this message:

‘Yesterday I went to pick up a prescription at my local drug store and was served by a former [patient]. She had sustained a significant brain injury from a near drowning, and was not expected to live. In spite of this, she made a great recovery and was determined to be a pharmacist...Her mom has been instrumental in supporting her daughter. Seeing her behind the pharmacy counter brought such joy to my heart. I wonder if this could be a story to inspire others who are in the earlier stages of their rehab journey?’

In 2011, Chantel Asamoah almost drowned when she was pulled into an undertow at Woodbine Beach in Toronto. Chantel, then 15, didn’t know how to swim and was playing in the water with friends. One friend, a lifeguard, tried to pull her out, but Chantel was in such a state of panic that she pushed her down. Her friends ran to call 911. An emergency crew arrived, but couldn’t locate Chantel, so they formed a search line with others on the beach and walked into the water. “When they did find me I’d been under for about 10 minutes and had a very weak pulse,” Chantel says.

We spoke about Chantel’s brain injury and how she’s learned to cope with it in her journey to become a pharmacist. She’s almost finished her third year at the Leslie Dan Faculty of Pharmacy at the University of Toronto.

BLOOM: What was your prognosis when you got to the hospital?

Chantel Asamoah:
The doctors told my mom I wouldn’t be able to walk or talk, and would essentially be a vegetable. They weren’t sure if I was going to make it, and they asked if she wanted to donate my organs.

I was at SickKids for two weeks and the first time I woke up my mom said I was confused about what happened and why I was there. I still have no memory of the accident. When I woke up I thought I was younger than I was. After SickKids I was at Holland Bloorview for two months.

BLOOM: What was the biggest challenge?

Chantel Asamoah:
My memory. I couldn’t remember what I had eaten the night before, and I couldn’t remember how some family and friends were related to me. There was also a big impact on my processing speed. It took me a very, very long time to take in information. My mother noticed that generally my personality was different—I would become agitated more quickly and my responses were more emotional. Speaking and eating were okay, but I had some problems with word finding.

When I first came to Bloorview I was in a wheelchair. Then I began to walk, but I was a lot clumsier and had problems with balance and coordination. That’s what I worked on in physio.

Before I was injured I played sports at a high level: basketball, volleyball and flag football. That was the end of me being involved in sports.

BLOOM: How did you cope with all these changes?

Chantel Asamoah:
At first I was kind of angry about it. I didn’t want to accept it. I just wanted to pretend that rehab was something I had to do, but when I got out of here, my life would be the same. Now it’s been almost eight years, and I’ve definitely accepted my brain injury and I’m working on my coping skills.

BLOOM: You mentioned your mom felt your personality had changed. How did you feel compared to before the injury?

Chantel Asamoah:
I felt like a totally different person. Things that came naturally to me before weren’t the same anymore. It was harder to do simple things, like playing sports. I was pretty emotional about it because sports had been a huge part of my life.

In terms of studying, I was a very smart student. I wouldn’t say my brain injury increased or decreased my intelligence, but it made it harder for me to study. Something that before took me an hour would now take three hours. I had to take a lot of breaks and I was easily fatigued and had to take naps. And it was hard to concentrate in class.

Part of accepting that you have a disability is accepting that others may not completely understand. For example, when I first went back to high school, most people knew I was getting accommodations. I was still performing well with the same marks, but with more effort. My other peers would tell me ‘Why do you get extra time for an exam when you get higher marks than me?’

BLOOM: I’ve heard other youth with brain injuries talk about how they lost friends after the injury.

Chantel Asamoah:
The whole situation was hard on my friends, especially the ones at the beach and the ones who came to the hospital to see me every day. They thought everything was the same. It was hard for them to cope with the fact that I was a different person.

I would say I lost a lot of friends. But I was also able to have new friendships with people who didn’t know me before the incident. So it was a brand new slate.

It was especially hard for my mom to understand that the way I process things or react to things is slightly different. Caron Gan made a big impact on my mom’s life. Her sessions with my mom helped her to understand how to better cope and deal with me as I was transitioning from hospital.

BLOOM: Can you talk about that transition?

Chantel Asamoah:
When you’re in the hospital, everything is idealized, compared to real life.

BLOOM: Do you mean protected?

Chantal Asamoah:
Yes. It’s not till you leave the hospital that you’re dealing with everyday stressors. When I left, Caron visited regularly with my mom at home, which was good, because my mom doesn’t drive and works.

[Social worker] Val Lusted met regularly with me at my high school, to help me cope. I had a lot of anxiety surrounding the fact that I was diagnosed with a brain injury, and wondering how it would impact my relationships with my friends or work or the sports I used to be involved in. One of the things Val did was talk about relaxation techniques. I still use them when I’m extremely stressed out, especially at school.

Before my accident, I was a perfectionist. That is very hard to do when you have a brain injury. When I first got out of the hospital, I was fighting the diagnosis and Val helped me come to terms with that, and with understanding that not everything can be perfect. She taught me ways to cope with things when they aren’t perfect, ways that are more desirable than getting angry and lashing out.

It’s really important to have these supports after you leave, because when you’re in hospital, you don’t get a taste of how your brain injury will impact everyday life. I’ve heard that a lot of this work is now done while patients are in hospital. For me, it was meeting with Val after I left that really helped me in finally accepting that this is a part of me. I feel it was a big factor in my school outcome.

I also worked with Sara Diederichs, a community resource teacher from the Bloorview School. She helped with my transition from high school to post-secondary school. At our high school there was a guidance counsellor, but it wasn’t the same. Sara understood the intricacies of dealing with someone with brain injury.

BLOOM: Were you able to finish high school with your peers?

Chantel Asamoah:
Yes. My accident happened right after I wrote my Grade 10 exams and I went back to school the second week of classes in September.

BLOOM: How did you decide on going into pharmacy?

Chantel Asamoah:
Pharmacy was a goal for me before my brain injury and I decided I wanted it to stay a goal. Because I had to give up on some things, like sports, I wanted to be able to maintain some part of what I was before.

I’ve always been interested in the sciences, biology and chemistry. I wanted to help people, but I didn’t necessarily think other healthcare positions jived with my personality. I also noticed that I liked educating people.

I was a tutor in high school and did a lot of mentorship programs with other students. Pharmacy is a good blend between having knowledge of the drugs and the biology and chemistry, and education. You’re taking that knowledge and applying it to patients—whether you’re solving their drug therapy needs or educating them about their medication or condition.

BLOOM: What has pharmacy school been like?

Chantel Asamoah:
It’s been difficult for me, but rewarding. It’s been difficult because of the sheer amount of work and information I have to go through, and the number of courses. I’m finding it’s important to advocate for myself. I’m glad I got a lot of practice doing that in my last years of high school and first years of university.

BLOOM: What kind of work do you want to do when you graduate?

Chantel Asamoah:
I really enjoy community pharmacy. I’ve been working in a pharmacy since my first year and what appeals to me is getting to build relationships with patients. When you work at a community pharmacy you see patients grow up. They come back and thank you for the recommendation you gave them last week. Even now, I have patients who come and remember my name or call and ask to speak with me.

BLOOM: It seems that you would bring special qualities to this work because of your health experiences.

Chantel Asamoah:
In school, we don’t talk much about invisible disabilities or brain injuries. I think I have a certain understanding with patients who have an invisible condition. I know that even though things look normal on the outside, it doesn’t necessarily mean they are. It gives me extra perspective and an understanding that things may not be as they appear. It allows me to be more sensitive.

Some of my co-workers tell me ‘Chantel, you’re too patient with some people.’ I think I understand the importance of patience. I needed people to be patient with me. Patients will come back looking for me because they know I’ll go through all of their medications and answer all their questions.

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

Chantel Asamoah:
My hope is I’ll get a full-time job in a community pharmacy. I also want to be involved in advocacy for invisible disabilities and disabilities in general. I’ve reached out to Dolly Menna-Dack with the youth advisory.

BLOOM: When you were in hospital here did you meet other youth with brain injuries, or hear from people who were further along with their journey?

Chantel Asamoah:
I didn’t hear stories about how other people were affected, or how people were dealing with it successfully. It would have been nice to hear.

BLOOM: I remember that a few years ago we were able to connect a current inpatient with a former one and she said she found it so helpful to speak to someone who understood.

Chantel Asamoah:
I think it would be very encouraging.

BLOOM: I understand you volunteered in our pharmacy before you went to pharmacy school?

Chantel Asamoah:
Yes, it was my first exposure to pharmacy. I learned a lot about the accuracy that is needed, and it was a safe environment for me to learn how my disability might impact my work in the field. Everyone knew I was a past patient, and they understood more about invisible disability than the general public. They really focused on what goals I wanted to reach, and only expected me to do things that they knew I could do.

BLOOM: What advice would you give other youth earlier on in their rehab for brain injury?

Chantel Asamoah:
What's important to be able to move on is acceptance. You have to accept that although the brain injury doesn't define who you are, it is a part of your life. It doesn't mean everything is now negative. Once you accept it's part of you, it allows your mind to think of ways to cope with things.

Advocacy is very important. Only you, yourself, know exactly what you need in terms of accommodations at school, or how you want your family members to treat you. That reflection on what it is that you need is important.

Friday, April 6, 2018

In Canada, disability researcher says 'racism is very polite'

By Louise Kinross

Sadora Asafaw has worked as a special-needs coordinator in Holland Bloorview's Spiral Garden and as a recreation assistant running programs for the hospital's inpatients. She recently defended her master’s thesis in Environmental Studies at York University: Amplifying the Experiences of Black Youth with Developmental Disabilities and Their Families: At the Margins of Policy and Practice. Sadora did in-person interviews with eight members of four families. The youth with intellectual disability had autism or, in one case, a rare genetic condition. “Racism, socioeconomic status, ableism and gendered inequities produce institutional and systemic barriers that affect the care pathways of black youth and their families,” she writes in the conclusion of her study. We spoke about it.

BLOOM: What was the goal of your study?

Sadora Asafaw: To really hear the experiences of black youth with developmental disabilities and their families. In my research, when working at Holland Bloorview, and in looking at other community organizations, there is very little documented about the experiences of these families.

BLOOM: What do we need to know about the results?

Sadora Asafaw:
How intersectional, or interconnected, some of their challenges are. So, for example, financial strain for families of children with disabilities isn’t a surprise. But in my research I learned that black people in Canada earn 75.6 cents on the dollar that non-racialized Canadians earn. I expected the financial strain of disability, but we rarely consider how these families have higher rates of poverty based on racism.

BLOOM: So it’s a double financial whammy.

Sadora Asafaw:
For any family raising a child with disabilities, if you have money, you can try to offset some of those challenges. Money helps in your ability to cope with challenges and ease the strain. These families are marginalized by poverty based on racism, in addition to the extra costs of raising a child with disabilities. But I wasn’t able to find anything that looked at both in Canada—that disaggregated families with children with disabilities based on race. Organizations have just started to collect data like that to take a health equity approach.

BLOOM: Another finding was that most services for these families are located in higher-income areas, so not in the families’ own communities.

Sadora Asafaw: That is absolutely true. The families have to travel great distances, and it’s hard if they don’t drive. But another issue related to where the services are located is how these families manage challenging behaviours in their children as they get older and bigger. Almost all of the families told me they had been pushed out of a program in a higher-income neighbourhood, or were no longer welcome, because of their child’s behaviour when they became teens.

When their kids were a lot younger, they looked cute and organizations could accommodate them and their meltdowns. But as they got older, staff reacted with fear to meltdowns. When the youth grew to be six feet tall and black, they felt threatened by his behaviour. Some black families also felt that the policies of the organization were applied more harshly to them, and that staff responses were shaped by racist stereotypes of black males as threatening.

There was also a sense—in programs or at school or even in hospitals—that when a black parent was advocating on their son or daughter’s behalf, staff would tend to doubt or question whether the youth’s behaviour was part of their disability or they were acting out.

BLOOM: I know you also found families felt that their youth with developmental disability didn’t receive the best health care.

Sadora Asafaw: Yes. They explained how their child’s disability resulted in them not getting preventative care, where doctors would help identify potential areas of concern that needed to be worked on, as opposed to acute care. This fit with my research, where I learned that families of youth with disabilities—especially intellectual disabilities—are less likely to get preventative healthcare and health promotion.

BLOOM: There was an interesting quote in your study from a sibling who said her brother was very overweight and developed other symptoms and when the family pressed for answers, they were told he had probably had diabetes for some time and was in crisis.

Sadora Asafaw:
When you add race and low income to the mix, preventative care is less likely to happen. If that family were high income and living in a community where they get preventative care, can afford many activities and are more aware of what to look for, it would probably be caught earlier on.

BLOOM: So there often isn’t proper monitoring of these youth for secondary health problems?

Sadora Asafaw:
It’s not just monitoring. If a family is told they have to change their eating habits, and they’re living on a low income, what if they can’t afford fruits and vegetables? Or what if the youth throws away food because of texture, but the family can’t afford to pay a behaviour therapist for help, and there’s no community health centre to support the family’s needs? Health promotion may also look different for these families, or require more steps.

BLOOM: I know you talked about the cost and location of programs that were barriers.

Sadora Asafaw:
I saw two things. Sometimes there’s an information dump about available services that leaves families feeling overwhelmed. They don’t know what to seek out, or how it may apply to their child.

On the other hand, sometimes workers recommend things that are so incredibly far from where the families live. If you’re working two to three jobs, and the program is on the other side of the city, and you have no transportation, how will you get there? Or families may not know that to get a spot in the summer, they have to register in the winter, so when they call, the program is full.

Enhanced care coordination alone is not going to address the challenges black families experience. We have to understand how intersectional these barriers are: the financial strain, and how that determines where you live, and where you live positions whether you can attend certain programs, and whether you can attend quality programs. We have to understand how a child’s challenging behaviour, and how it may be perceived as a threat, contributes to that family’s experience of isolation and lack of support. We’re talking about racism. And if we’re not confronting that in our policies and programs and practices, these systemic and institutional injustices will persist.

BLOOM: So you’re talking about how these families are marginalized in multiple ways, and how different kinds of discrimination stack up.

Sadora Asafaw: Yes. And if clinicians don’t hear about this from families, it may be because English is a second language for parents. Or maybe they’re from Canada and they’re afraid of encounters with doctors or teachers or other persons of authority. They don’t feel safe to voice their concerns through traditional reporting methods. They know that part of an organization’s protocol for their child’s escalating behaviour is to call the police. Writing a complaint doesn’t work for these families because it leaves them feeling more vulnerable to being penalized.

BLOOM: Something that really stood out for me in your study was when a mother talked about how she’d rather her son beat her up than call 911 for help, because police would treat him like a criminal. “They would handcuff my boy…make him freak out all the more and then because they’re going to go and take the situation out of my hands, because they’re probably gonna [say] ‘Well, you called us!...’ He doesn’t have language to speak and unless I know what cop is coming to my door…Nope! Not gonna go there.”

Sadora Asafaw:
I hear about situations like that a lot. CBC just released a report that looked at deadly encounters and how black people are more likely than any other racial group to be a victim. But no one has dug deep to look at how this informs these families’ care pathways. You see how black, indigenous and other people of colour continue to be left out. We have to address all kinds of marginalization for these families when developing and promoting programs.

The South Asian Autism Awareness Centre has done some incredible and important work, but they’re doing it with very little funding and great demands. Families go there because they trust them and they’re able to meet people in their community.

BLOOM: So you’re talking about targeting care to different communities?

Sadora Asafaw:
First we need to hear from those communities and understand what’s not working. Maybe we can work with local organizations that are culturally based. Sometimes faith plays a big role, so perhaps working with local churches or mosques or other sources of support. If service providers aren’t hearing from black families and aren’t seeing them in their programs and services, you have to ask why? What is a barrier? What leads these families not to feel comfortable?

We need to do more outreach to families that aren’t engaged. You know that saying in the disability community ‘Nothing about us without us?’ It applies to black folks and other indigenous populations. It’s not that we don’t know what to do. It’s that we’re not given the financial resources to develop the programs and the physical space to do it in.

People think that culture isolates everyone, and is why organizations can’t reach certain populations. But too often that’s used as a scapegoat to explain why families of diverse backgrounds are not coming to a program.

Families tell me they know right away when they walk into a place when they don’t feel welcome. In Canada, racism is very polite. You can go to a program and still feel pushed out through the words they’re using, or the way they selectively decide to apply policy, or in realizing that you don’t have the right words to apply for a service. How many people in the program look like your family? How many decision-makers look like your family?

How many black families begin a program and then don’t go back? It’s not just important how someone enters a program, but how they exit. Part of it may be that they’re protecting their own safety. When you don’t do something in the manner that the person in authority likes, you’re afraid about how they may respond. Maybe they will call children’s aid. Black families are far more likely to have their children removed by CAS than other racial groups.

It’s the same thing with the mother who didn’t want to call police when her child has a violent meltdown. She’d rather the child take it out on her, because she knows existing options won’t help her family.

BLOOM: What did families tell you things would look like in their ideal world?

Sadora Asafaw:
One would be having a specialized centre or hub that is working to support specific ethnoracial groups with the needs and struggles they have. It would build community capacity of black and other racialized families, so they can gather community input along with the best evidence to inform their programs. It’s not that everyone there has to be black, but you would hope to see more people who look like you and are working towards the same goal.

When parents talk about support groups, they say they couldn’t relate to what was talked about in traditional groups, because their parenting challenges were different based on their ethnoracial background. I don’t know of any place in Toronto that looks at the specific needs of black families with youth with developmental disabilities.

The reason I focused on black families was that they experience some of the most difficult challenges, and are often afraid for their survival. They’re afraid they might not survive certain encounters when it comes to their safety. What would an organization look like where they could aspire to more, and feel they can participate and really belong?

BLOOM: I know we’ve begun to collect health equity data from families.

Sadora Asafaw:
If someone calls a code white [for potential violence], is data collected on that? That might show biases within staff, or a way to better manage situations in future. Look at where certain groups are being served in the organization. Some families come directly from SickKids for rehab. But what about community programs?

Maybe the reason a community program is not diverse is because it’s not easy to get to. Holland Bloorview is in a high-income area where homes go for millions of dollars. Perhaps many of the people attending a program live in close proximity to Bloorview.

Look at the duration that families stay with a program. If families don’t feel comfortable, they won’t stay. What about families who are discharged from a program because the organization felt it couldn’t support them? Are there higher rates of black families discharged from programs, because too many codes were being called for their child?

The other thing I didn’t spend too much time on, but that some of the families touched on, was to recognize some of the similarities between black families and black workers in healthcare.

Black staff in this sector tend to be personal support workers or nursing staff. They’re frontline, not in managerial positions. They’re often in contract positions, so their roles are somewhat precarious. It may be very difficult for them to share their experiences of racism, given the politeness that accompanies it in Canada. If they’re constantly advocating for families who have experienced something they perceive to be different or unfair, they may be viewed as a troublemaker.

If you have less developmental pediatricians that are black, less occupational therapists that are black, less scientists that are black, you have less black people for staff to look to for mentorship and leadership. It’s great that there are a lot of black workers in frontline health positions. But you need to see them in management and leadership positions. Otherwise it can make it very difficult for black workers to voice their concerns or opinions or perspectives. 

Tuesday, March 27, 2018

Southern Health fined $1.8 million in death of Sara Ryan's son

By Louise Kinross

Yesterday Southern Health in Britain was fined just over $1.8 million dollars for the preventable death of Connor Sparrowhawk, an 18-year-old with autism and seizures who drowned alone in a bath in a National Health Services treatment unit in 2013. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable.

Connor's mother Sara Ryan (above left) had warned staff that Connor appeared to have bitten his tongue and was disoriented during a visit, suggesting a seizure. But he was allowed to bathe unsupervised behind a locked door, where he drowned.

Because of Sara's tenacity, more than 1,000 unexpected deaths of other Southern Health patients with intellectual disabilities or mental illness, that hadn't been investigated, were uncovered.

BLOOM interviewed Sara in 2015: Son's death sparks a search for justice.   

In her statement from the family yesterday, Sara wrote:

"No one should die a preventable death in the care of the state. Learning disabled people should not die on average 20 years before their non-disabled peers. Families should not have to fight for answers and accountability."

2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population, and men with developmental disability died 13 years earlier. Over a third of the deaths could have been prevented with good health care. 

Photo below of Connor with his sister Rosie.

Wednesday, March 21, 2018

My jar of awesome

By Louise Kinross

Lots of amazing things happen in my son's life, things that fill my heart with gratitude. But too often those memories get lost amid the challenges and worries of raising an adult son with disabilities.

Now I'm going to write those great things down, and put them in a glass jar, so I don't forget them.

The idea came from Sazini Nzula, a Montreal mother of two boys with autism and the author of Beautiful Inside and Out: What You Ought to Know About Autism. I interviewed her a couple of weeks ago.

Sazini told me about the 'jars of awesome' she keeps for her sons. They decorate two large glass jars. Then when her kids do something wonderful or have a great experience, she writes it down on a piece of sticky paper and puts the paper in the jar. She writes something each evening and watches the jars fill up. "My plan is that if we go through a really challenging time during the year, I will pull them out to read," Sazini says. "And certainly at the end of the year, we will read them to remember what happened." 

Here are two memories for my son's jar.

A week ago, my son's worker sent me the photo above. My son volunteers twice a week by cleaning at Variety Village. He also takes personal training with a coach there. The personal training helps keep him fit at a time when he's coping with a severely curved spine.

"I went to go get Ben for lunch and I found him walking on the treadmill," the worker wrote. "He was increasing the speed by himself. I snapped a pic before he realized I was there."

You'll notice that he set his broom and dustpan beside the treadmill.

What was amazing was that Ben decided to get on the treadmill and exercise himself. Usually he has a personal trainer with him. Due to his physical disability he has issues with balance and coordination, so the trainer usually starts the treadmill and changes the speed.

"On our way to lunch, he stopped at a couple of machines and did some arm workouts," his worker wrote. Again, he's used to doing the machines with his trainer, but now he felt comfortable enough to do them himself.

Working out on his own is the first note that will go in my jar. 

The second note is about when Ben took his speech app on an iPad with him to a L'Arche arts program he attends. 

Ben has always resisted using his speech app. However, in the last few weeks he started using it to tell me which animal he wanted to paint. As a result of attending the arts program at L'Arche, Ben now enjoys drawing animals and then painting them. What's interesting is that because of the speech app, Ben can more easily tell me which animals he wants, and they are always somewhat unusual ones. He'll choose the Gibbon ape, or an opossum or a camel.

Last week Ben agreed to take the speech app to L'Arche, but I was doubtful he would use it. 

When my husband picked him up, the teachers were excited to say that Ben had used the app to suggest the group draw a scorpion. And then Ben drew a really cool one. Because he doesn't have a signing worker with him in this program, he's had limited ability to express himself, and people probably don't have a sense of who he is inside. Choosing the scorpion was something very specific and personal.

So those two happenings are the first I'll be dropping in my jar of awesome. They may be small things to other people, but to us they are huge. 

Let me know if you decide to create your own jar.

Tuesday, March 20, 2018

Why is using electric shocks on disabled students a non-story?

Members of disability rights group ADAPT protest the use of electric shocks on disabled students in front of FDA Commissioner Scott Gottlieb's home in Washington, D.C.

By Louise Kinross

What if you heard that a school used electric shocks on students for even minor infractions like refusing to take a coat off, closing their eyes for 15 seconds in their seat, or crying?

I first heard about the Judge Rotenberg Center (JDC) in Canton, Mass. WAY back in 2012. That's when I signed a petition by a former staff member to stop the electric shocks used against children and adults with autism and other developmental and emotional disabilities in their day and residential programs. That petition was signed by over 260,000 people.

In 2016, the FDA proposed banning the use of electric shock devices because it “determined that these devices present an unreasonable and substantial risk of illness or injury.” But the proposed regulation sits in limbo, and students at JDC continue to be shocked.

For the last two weeks, members of the disability rights group ADAPT have been camped out in protest in front of FDA Commissioner Scott Gottlieb's home in Washington, D.C. That's a photo of them above.

But no mainstream newspaper has covered the protest, or the story of the students who continue to be shocked.

Now the members of ADAPT have been told they'll be arrested if they don't vacate the camp they've set up.

In 2014, the Autistic Self-Advocacy Network wrote this history of the school's use of electric shocks over decades, noting it had been condemned by current and previous United Nations Special Rapporteurs on Torture:

"Children and adults at the JRC who are subjected to electric shocks are shocked on their legs, their arms, the soles of their feet, their fingertips, and their torsos," writes the Autistic Self-Advocacy Network. "Often, they are shocked for years, even for longer than a decade in some cases. These shocks come from a remote-controlled backpack, called a Graduated Electronic Decelerator (GED), which is attached to the student’s back. These shocks have been known to cause blistering and painful red spots on the students’ skin. Additionally, the GED-4 was created to be even stronger than the GED-1 and therefore has potential to cause more pain and more injury. Some students receive hundreds of shocks per day. One student received 5,000 shocks in one day...

"There is a disproportionate number of students of color within the JRC. Forty-five percent of JRC students are Black, and 28 percent are Latino. One psychiatrist who visited JRC described it thus: “Street kids, kids of color, carrying these shock backpacks. It is prison-like and they are prisoners of the apparatus.”

What is it about North American culture that makes physical abuse of disabled children and adults a non-story?

Last week, CBC reported 2014 Statistics Canada data that showed Canadians with disabilities are almost two times as likely as others to be the victims of violent crimes.

Way back in 2012, the World Health Organization reported that children with disabilities were 2.9 times more likely to experience sexual violence and 3.6 times more likely to endure physical violence than non-disabled children. This was based on 17 studies in high-income countries.

But in Canada? Aren't we better than that? Apparently not, according to our new data.

Judging by the lack of media coverage of the ADAPT protest, shocking disabled American children and adults in a way that's considered torture by the United Nations is not news.

For a personal story from a former JRC student, please watch this video