'I'm trans because that's who I am'

By Louise Kinross

Logan Wong is known for his stylish bow ties. But in this photo, he's wearing a shirt with the colours of the transgender flag: blue and pink, the traditional colours for boys and girls, and white, representing people who are intersex, transitioning or a neutral or undefined gender. Logan is a transgender man who has cerebral palsy and grew up receiving services here. He's also the co-chair of Holland Bloorview’s youth advisory, and works as a host to inpatients in our teen lounge. He’s going into his fourth year of social work at Ryerson University. We talked about his experiences and how Holland Bloorview can better support young adults like him.

BLOOM: What does it mean to be transgender?

Logan Wong: It’s when the gender you’re assigned at birth doesn’t match with what you believe to be your gender. Trans is an umbrella. It can mean you’re a guy, you’re a woman, or you’re both. There are new labels coming up every day.

BLOOM: How did you recognize you were transgender?

Logan Wong: I came out publicly last September. But I’ve known I was trans since I was seven. When I was that age I presented as a male, and I was really self-conscious about my body. I don’t think anyone—including me—recognized it as being trans at the time. I thought I liked boy stuff, and I wouldn’t leave the house in a dress.

I have two older brothers. We have a home video of my birthday party when my parents gave me a Barbie. I threw it on the floor and started playing with my brothers’ hot wheels.

My parents recognized how terrible I felt about myself, and how much of a struggle it was for me. And my mom got better at buying gender neutral clothes and clothes that weren’t pink.

BLOOM: What’s been the greatest challenge?

Logan Wong: Definitely finding accessible and trans-friendly health-care, and my name change stuff and government forms. Changing everything from my name on my insurance to my name at school are examples.

I’m lucky to have finally found a doctor that is really educated in both transgender stuff and disability—which is really rare. I go to Parkdale Community Health Centre, and I had to transfer my whole primary care over there to be able to access testosterone. Before that, when I saw my regular family doctor, they were going to refer me to a hormone specialist. But there was a year wait list.

BLOOM: What’s been the greatest joy?

Logan Wong: How much pride I have, and how much I can use my experience, both as trans and having a disability, as representation for both communities at the same time. I really appreciate that opportunity.

BLOOM: What advice would you give parents whose disabled child is questioning their gender?

Logan Wong: I would say listen to what they have to say about themselves. Don’t make assumptions about what they’re thinking. Let them express themselves the way they want to.

BLOOM: Did having a disability make it easier or harder to accept your transgender identity?

Logan Wong: In some aspects it made it easier. I’m in a wheelchair and no one expects me to stand up and pee. So I don’t have to worry about facing harassment in the bathroom. I usually use a single stall bathroom.

Growing up, my life didn’t revolve around the fact that I had a disability. My parents believed that my life shouldn’t just be about therapy. That made me willing to explore other parts of my life and identity, so it made it easier for me to recognize who I am.

BLOOM: Is there anything about having a disability that made being transgender harder?

Logan Wong: Making people realize that I’m not trans because I have a disability, or because of other things that happened in my life. I’m not trans because I’m oppressed by other things, or because I’m attention-seeking. I’m trans because that’s who I am.

BLOOM: How does the disability community view transgender people?

Logan Wong: I definitely find more community within the trans and queer community. I do associate with the disabled community, but I’ve found able-bodied friends who are trans and queer are way more accepting of my identity. I think it goes back to some people thinking that I’m trans because I want attention.

I do feel I’m more welcomed in the trans and queer community. They don’t see my disability as a thing. It’s part of my identity, of course, but they don’t emphasize it as much as it’s focused on in the disability community.

Do I necessarily tell new people with disabilities that I meet that I’m trans? Not necessarily.

BLOOM: What would you like our staff to know about how they can best work with youth who are transgender?

Logan Wong: Ask them what their name is, and what pronouns they use. It’s very simple. Recognize that the documents you get might not have the name that they prefer on it. Don’t take the paper as the most important thing. Value what they say.

BLOOM: Have you ever received health care that wasn’t respectful or affirming of who you are?

Logan Wong: I’ve only had one experience, and it was recent. My cerebral palsy specialist at an adult hospital was blatantly transphobic.

BLOOM: In what way?

Logan Wong: He refused to refer to me with my now legal name, because he knew me before. I’ve chosen to not go to that person since. I called and explained that I was transferring to another specialist, because I don’t want this happening to another person.

BLOOM: What could we do at Holland Bloorview to better support youth who are gay, transgender or bisexual?

Logan Wong: I like the steps the equity, diversity and inclusion committee is taking.

BLOOM: Are you on that committee?

Logan Wong: Yes. They’ve encouraged staff to put their pronouns in their e-mail signature, which is really important, and created gender-neutral bathrooms. Instead of using mom and dad, just say parents. We have to think about it, not only in terms of children and youth, but the parents who are potentially trans.

BLOOM: What about creating some kind of peer support here for clients who are transgender?

Logan Wong: I think support groups, with the right intention, can always be a good opportunity to express the values of Holland Bloorview.

BLOOM: Why did you decide to be a youth leader?

Logan Wong: I decided to become a youth leader before I publicly transitioned. I wanted a platform to advocate for people with disabilities, and specifically youth voices. I feel we don’t hear enough from youth about their opinions on what’s happening in the disability community, or politics, or the world.

BLOOM: What are your hopes for the future?

Logan Wong: I’m hoping to be a social worker. I haven’t confirmed it yet, but I’m hoping my placement will be at the Ronald McDonald House. I’ve gained a lot of clinical experience in my work here, and I’d like to continue that in another space.

After I graduate I’m thinking about master’s programs, both social work and women and gender studies.

In Toronto, there are lots of trans-specific supports at The 519. 

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While in hospital, Fiaz creates bright, bold, energetic art

By Louise Kinross

Fiaz Rahman has had a rough six months. The 18-year-old developed a pressure injury in August that prevented him from going to school for months. Just before Christmas he was hospitalized at Holland Bloorview. "More than physically, it was emotionally painful, because I wasn't in control of it," he says. "I didn't intend for it to happen. It ruined my lifestyle. I couldn't enjoy my summer or go to school. It was difficult for my parents, and I couldn't hang out with friends. I felt trapped, isolated and lonely." While in hospital, Fiaz has pursued his love of art, and he has dozens of bright, bold, energetic pieces on display in his room. We spoke about his stay here.

BLOOM: How has art helped you cope while in hospital?

Fiaz Rahman: I've always loved art. I love media and I'm a poet. I love movies and colours and imagination. They're all a big part of my inspiration. Doing art here showed me a lot of things I didn't know I had inside me. It feels like I'm creating content for the world. You know how artists leave their mark and their legacy, and make a name for themselves?

I like colours—constructing colours, colliding colours, obstructing colours. I want to create art as a business in the future, as a career. I want to go to the Ontario College of Art and Design. I like trying new things, and seeing what works, and what doesn't work, for me. I like making something better.

BLOOM: Where did you do your art while here?

Fiaz Rahman: I did some of it in recreation and some of it by myself in my room.

BLOOM: I noticed you have some art gallery tickets on your windowsill.

Fiaz Rahman: Dr. Flap, the clown, printed those up. I've tried to invite everyone and anyone.

BLOOM: What has been the hardest part of being in hospital?

Fiaz Rahman: I love this place. It's an amazing place. People need each other and we need to take care of each other. Kindness goes a long way. I've had a lot of support and I'm happy mentally and emotionally here. I still have my pressure ulcer, but it's healing and I'm so grateful. It's not as deep as it was. 

BLOOM: Do you have any advice for our staff?

Fiaz Rahman: It's important for staff to understand where a child is coming from. Don't judge them. Understand and have empathy for them. You need to connect to the kids.

BLOOM: What advice would you give a child or teen who was coming to stay here?

Fiaz Rahman: It's such a great facility. Speak to people here, and let them help you. Create new friends. Surround yourself with a positive environment. Try to find out what you're good at and explore your passions. It's going to be tough, so you have to be strong and patient.

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'I like a nurse who's caring, sometimes funny, always positive'

By Louise Kinross

Justin Chau is an 11-year-old inpatient at Holland Bloorview. He's writing a story about his life following a surgery to remove a brain tumour. He loves orange, because it’s the colour of flames, drawing abstract art and camping. We spoke about his story and experiences in hospital.

BLOOM: You wrote that when you woke up after your 10-hour surgery, everything felt fake. What do you mean?

Justin Chau: I wasn’t aware of where I was, because it didn’t feel real. I wasn’t aware of where I was in space. I felt different in my body. I didn’t feel like my normal self. I felt like it was all a dream in my head.

BLOOM: In your story, you say you’ve been able to sleep better since you came to Holland Bloorview. Is that because it’s quieter here?

Justin Chau: No. It’s because I do lots of therapy and talk to lots of people and I’ve made friends. I’m not on any medication, I can walk and do stuff better, and I’m independent in my room. Because I’ve been here for longer, I get to know people better. I feel like I’m not alone, because everyone is supporting me.

BLOOM: You wrote about one friend you made here, who was a baby.

Justin Chau: Yes. My mom made friends with his mom, and one day I got to babysit him for a couple of minutes in my room, while our moms went to do something. He would laugh at me while I do stuff. After that his mom trusted me, so I continued to babysit him. They call us soul brothers, because we both have a scar on the same side of our head. When it was his last night here, I decided to go and play with him. My mom and his mom exchanged numbers so we can talk to each other and meet up in the summer. This is just the beginning of our friendship.

BLOOM: You mention a big list of nurses that you like, and say they’ve inspired you to consider nursing as a career. What qualities are important in a nurse?

Justin Chau: I think a nurse that always watches over you and that comes in at the right time to check if you need help. They should know my feeding schedule. They should teach me and guide me. Since I want to be a nurse, they taught me to do my own feeds.

I like a nurse who's caring, sometimes funny, always positive.

BLOOM: Why did you decide to write a story about your experiences?

Justin Chau: My social worker, Anna Marie, asked me if I wanted to create a timeline of how far I’ve come, and the progress I’ve made. I was like ‘That’s a good idea, can I write a story?’ It’s important because I want to know how much I’ve been improving, and how quickly and well my body has recovered.

BLOOM: Is there anything we can do better here at Holland Bloorview?

Justin Chau: I like almost everything here. I think the therapists do a really good job of pushing kids to work harder, so that they improve, but not so hard that we’re exhausted. They push us so that we feel confident and strong.

I think this hospital is one of the best that I’ve seen. They have recreation in case you’re bored, and there are lots of things to do. You get a nice room with a TV, and the nurses are always caring for you. And you can go to school here. I have fun going to school.

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After deep brain stimulation, 'I can't be happier'

By Louise Kinross

We recently heard from former Bloorview School student Osmond Shen, who wanted to share his experience with deep brain stimulation to treat involuntary movements caused by cerebral palsy. "It's made a huge difference in my body," says Osmond, 20, who enjoys playing Nintendo switch games with his brother Edmond, studying with a tutor, and online shopping. Deep brain stimulation is a surgery where thin wires called electrodes are placed into one or both sides of the brain in areas that control movement. The electrodes are connected by extension wires to a battery-operated device, similar to a pacemaker, placed under the skin below the collarbone. A few weeks after surgery, this device is programmed to interrupt the atypical signalling patterns causing movement problems.

BLOOM: What problem were you hoping deep brain stimulation would treat?

Osmond Shen: To decrease my dystonia, or uncontrolled body movements. Before my surgery, my legs were painfully stuck together all the time. Also, my neck was becoming so stiff and stuck to one side, that it was difficult to turn my head back and around. I experienced lots of pain when my muscles were stiff, and, when you go through constant pain during the night, you [don't] have enough sleep.

BLOOM: Had you tried other treatments?

Osmond Shen: Yes. I had been on an intrathecal baclofen pump since 2005. But even though for the last couple of years I've been on a high dose of this medication, my body was still stiff.

BLOOM: Who suggested deep brain stimulation to you?

Osmond Shen: My baclofen pump doctor at Toronto Rehab referred me to a movement disorder clinic at Toronto Western Hospital.

BLOOM: I thought this surgery was always done while the patient was awake, but that wasn't the case for you, right?

Osmond Shen: No. I wasn't awake during my six-hour procedure, because of my uncontrolled movements.

BLOOM: Was the recovery painful?

Osmond Shen: It wasn't painful, but it was very uncomfortable. I had staples on three parts of my body because, in addition to deep brain stimulation, I had my baclofen pump replaced. The staples were itchy and made me so uncomfortable.

BLOOM: What difference did deep brain stimulation make, in terms of how you feel, or what you can do?

Osmond Shen: First of all, I can turn around my neck easily. Also, I have much less pain in my legs. It's made a big difference since it was turned on. My body has been much more relaxed and flexible. Life is much easier for me now.

BLOOM: Many people would be anxious about having this surgery. Did you do anything in advance to try to help you relax?

Osmond Shen: My parents, my physiotherapist, my neurosurgeon and my family friend were all so positive, and on the same page, and kept encouraging me to go for this procedure. My part was doing research about this technology on the Internet.

BLOOM: Is there anything you aren't happy about with the results?

Osmond Shen: I can't be happier than I am today. The results are what I expected, and my doctor said it usually takes about one year to reach its full result, so I still expect more improvements.

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'The tears represent sadness, but sort of a beautiful sadness'

By Louise Kinross

Jessica Chan, 20 (above), made a mask to convey what it’s like to live with a brain injury. At age 17, she had surgery to remove a brain tumour. Today, the University of Toronto student is one of several young adults showing masks they created at an Unmasking Brain Injury workshop at Holland Bloorview. The goal is to increase public understanding of this invisible disability.

BLOOM: Can you tell us about your brain injury?

Jessica Chan: I had a brain tumour. I was having really bad nausea and headaches and I went to the family doctor multiple times, but they brushed it off as stress related, because it was exam time. They never even considered that it was possibly connected to this. Some of the exams I took, even though I felt like I was going to pass out, and some I couldn’t. That summer, when my vision was getting wonky, I went to the eye doctor to get glasses, and the doctor saw the pressure behind my eyes and sent me to the emergency room at St. Michael’s Hospital. They put me in a scan and saw a pretty big mass, and I didn’t go home for months. I had surgery there and came here for rehab.

BLOOM: How were things different for you after the brain injury?

Jessica Chan: Before I started noticing differences, I could remember things easily, including big chunks of text. Now the way I absorb material is different, and I have to get the general concept first. Before I could continually work for hours, and now I have to learn to take breaks and hold myself back or I tire myself out. 

Before my diagnosis, people around me said they started to notice that I seemed to take longer to respond, and wasn't as quick to get humour or jokes. They said I seemed more distant.

BLOOM: What about changes after your surgery?

Jessica Chan: When I first woke up from surgery my right side was completely paralyzed. I had to retrain it, and it’s still not as great, but I’m able to move and be almost as active as I used to. I used to play volleyball and be a cross-country runner, but when I went back to school after rehab they wouldn’t let me back on the volleyball team. That was a big blow. I was also in band and played trombone. I was able to play here in music therapy, and that was something from before that I could still do and that kept me going.

BLOOM: What has been the greatest challenge?

Jessica Chan: Trying to get back to where I felt like I was before. The summer of my brain injury was before Grade 12 and that was a big year, the year before going to university. When my parents told me I couldn't go back to school in September, that was a big blow. You feel like you had all of these things on your plate, and the plate has toppled over.

BLOOM: I know that some students find the invisible nature of the injury difficult when they go back to school.

Jessica Chan: When I went back to school people kind of knew what happened, but they didn’t know the extent, because I was walking and talking similar to how I had before. They didn’t notice my issues with right-sided weakness, and they couldn’t see that I had a hard time understanding. They didn’t know I’d had to relearn how to talk again. In our school, no one really talked about disability. I did a TEDx talk to the school to share my story. The theme was mindfulness, and I used my story to share my own experiences and the importance of taking care of your mental health while dealing with a physical injury.

BLOOM: Do you have any practical coping strategies that might help youth who are earlier along in rehab?

Jessica Chan: Build your support network. Find things and people that help you get through it. Make sure you keep connected with your friends. My family was an important part of my support. I also relied on support from health professionals. When I was in the ICU, a big part was building mini-relationships with the nurses. Don’t be afraid to open up and make connections.

BLOOM: How have you changed?

Jessica Chan: I had high grades and I’ve always been an over-achiever. I was going to enter a business program, and I put a lot of expectations on myself. I think I cared a lot about what I feel are superficial things now.

When I couldn’t pursue that at the pace I wanted, I had to start looking at other qualities I have to offer—other than my GPA. Through this process I was introduced to health care, and the support I was provided reminded me that that’s more of what I want to do with my life. I’m now at the University of Toronto in a psychological and health sciences program, and hope to specialize in mental health studies.

BLOOM: Can you describe your mask and why you decorated it the way you did?

Jessica Chan: I designed it on the spot. The red side represents the one-sided weakness and the pain you feel targeted in that area of your head. I feel pain is most closely associated with red. The rest is mostly a lighter, brighter blue, the wellness part and me fighting to make it okay. Blue sky, blue waters, clarity. When you think of those calm words, you think of the colour blue. And when you combine red and blue, you get my favourite colour, purple.

The tears represent sadness, but sort of a beautiful sadness. This experience has given me many opportunities that I wouldn’t have otherwise had, and there’s some beauty in that. I feel like I was pushed forward to get more insight into myself a bit earlier than I would have. The tears are for pain and growth.

The floral arrangement of gems represents the beauty that spontaneously occurs as a result of what I've been through. The new paths, connections and friendships are represented by this colourful, sparkly collection.

BLOOM: What are your hopes for the future?

Jessica Chan: I’d love to be a counsellor, a psychologist. In whatever I choose, my main goal is to be able to help people in a meaningful way.  I was also really inspired by the speech-language pathologist I had here, so that’s another pathway.

BLOOM: What interested you about speech therapy?

Jessica Chan: It was the testing. I remember there was a picture of a hammock, and I couldn’t for the life of me remember what the word was.

BLOOM: Because of problems with word finding.

Jessica Chan: I couldn’t find that word. I tried to think about it for a long time and when I finally got it I was amazed—that I’d lost a word I knew my whole life. It hit me how fragile language really is, but also how important it can be. 

Thinking about the rehab process and helping people find words could combine with my interest in psychology and my passion in writing and language. Because I’ve had that experience of not being able to find words, I have insight into what it feels like for the patient. I think that would make me more empathetic.

BLOOM: We just did a story with Dr. Brian Goldman, who said that the best doctors are ones who have been patients. Did you find making the mask valuable?

Jessica Chan: Yes. Every time I have to do something that involves thinking back, it helps me realize how I’ve grown. While living it, you don’t think about all the little things you’ve accomplished through this process. Having a chance to make my mask and explain my story helps me realize how far I’ve come. I also have a radiation mask that I keep at home, as another reminder. It was starting to look a bit scary, so after doing my mask here I covered it in flowers. Now it’s a decorative piece that isn’t as frightening.

BLOOM: And the flowers are about growth.

Jessica Chan: Yes, the growth part. It’s not just about the physical symptoms, it’s the whole process that happens to you and the changes, and the emotional impact—especially the little things. There are multiple layers. It’s not exactly being comfortable on the bus telling people you can’t give up your seat, because you will fall over. It’s subtle things that people fail to recognize.

BLOOM: You mentioned emotional impact. Can you talk more about that?

Jessica Chan: It was hard. It was shocking. It takes a while to really digest and understand all of the subtleties of how you’re impacted. Every time you’re told you can’t do this now, it’s another blow to your self-esteem, your ability level. Or being told you have to do something this way, instead. Before, I could easily serve a ball, but now, after I had to train for it, I still can't do it as well as before. It’s having to work back to the level you were. Everything takes longer to process and do.

BLOOM: It sounds like you would need a lot of self-compassion.

Jessica Chan: That’s hard for me to get. It’s still hard for me to comprehend why this happened to me. I’m in second year at university, and so many people I know are already ahead, in their final years, and they’ve had co-op positions and jobs that they’ve kept. You can’t help but compare.

BLOOM: But it sounds like you’ve developed in other ways.

Jessica Chan: Having people tell me about my insight and level of compassion that they don’t have, or can’t really ever get, that was a big realization to me that this might have turned into a different path, but I went along the path just as much as they continued along theirs.

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As a child, 'my strength faded away'

By Terrence Bishundayal

At the age of six I began losing my childhood.

In 2002, my family came from Guyana to Canada. I started first grade at North Kipling Junior Middle School. Immediately after, I noticed that I had trouble climbing the stairs. I would lose my balance and fall. My teacher suggested I walk on the opposite side of the stairs, while the class walked on the right, so I could take my time.

My legs hurt when walking long distances and I would ask to be lifted. I didn’t realize it at that age, but my muscles were getting stiff. Sometimes when I was walking I would trip.

In gym class, I couldn’t keep up with the other kids doing sports. My gym teacher told my parents she thought my shoes were too big. At the time, none of us thought it was anything serious.

By the end of Grade 1, I was using the elevator.

My dad took me to the doctor and he ran tests and referred me to SickKids. I had surgery which determined that I had Duchenne muscular dystrophy (DMD). This is the continuous weakening of all of the body’s muscles over time.

To be honest, as a kid, I didn’t really understand it.

By the spring of 2003, I was using a manual wheelchair. This confused the other students. “What’s with the chair?” they’d ask. “I’ve seen you up before.” They weren’t mean, but more curious.

The same thing happened when I was given easier things to do in gym class. If we were playing basketball, a hoop was put on the floor and if I got the ball in the hoop, that counted as a goal for my team. The students wanted to know why that just applied to me.

“I have a leg problem,” was my response. That was all I knew about DMD at the time.

In Grade 3, I was prescribed Deflazacort, which is a steroid medication taken by patients with DMD. My parents told me “If you take these pills, your muscles will be better.” I thought that meant I’d be like the other boys. But while they were getting stronger and able to do more physical activities, my strength faded away.

I was living with my cousins at the time, and one day we noticed that they were all growing taller and I wasn’t. It was the first time I noticed I was shorter than other kids. I didn’t know Deflazacort would affect my growth, and I wanted to be tall like the others. I was clearly upset about this and I became more emotional and sensitive.

The school had a large playground outside but I couldn’t play during recess. My wheelchair was hard to push over grass and a couple of times I flipped over. Many times I’d just sit by the door so when the bell rang I could get back to class quickly. In the winter, my wheelchair could get stuck in the snow or slide on ice.

In Grade 4, the teacher picked other students to help me at recess. She would assign one boy and one girl. I wanted to hang out with the guys, but often the boy assigned to me would say ‘I’m going over here to play basketball,’ or would just throw me off to the girl.

Then my homework started to pile up. My hands got sore when writing, and I couldn’t work at the same speed. I’d often do homework from 4:30 to 9:30 at night, and sometimes I still had to get up early the next morning to finish it. I didn’t know how to tell my teacher what was happening. I was the kind of student who didn’t want to show up at school with incomplete work.

Eventually I got frustrated and cried, and my mom called the teacher. After that my homework was reduced. For example, instead of 30 math questions, I’d do 15, or instead of a full page of journal writing, I’d do half a page.

Students started to tease me. I was gaining weight because I wasn’t getting as much exercise in my wheelchair. Nobody had told me anything about wheelchair sports. They called me fat and an emotional wreck.

Kids can be mean, and they didn’t understand what was happening to me. I did report it to the teacher when I thought a student was going too far, but it involved many students.

In Grade 5, the teachers began planning a three-day trip to Ottawa. I was excited to go, and it never occurred to me that I wouldn’t be able to. But I had to stay home because they didn’t have knowledge about how to do my personal care, and my mom was working. I was very upset about that.

If I was talking to a younger student with DMD now, I’d say to always report teasing to your teacher, no matter how small, because it can get worse if you don’t.

When you feel down or sad, it’s best to talk it over with an older adult who you trust. It might not be your parents, because they may be working, or you may be scared to tell them. When I tried to talk to other classmates about what I was going through, they didn’t understand. Their greatest worry was what they were going to do at recess, or getting a snack.

I was a patient at Holland Bloorview, and sometimes I was invited to attend events with other kids with DMD. But I didn’t want to take part in any of that. I didn’t want to talk about the pain I was feeling, and I didn’t want to look at someone older and to think “this is what will happen to me.” It’s kind of ironic, but I was scared of people with disabilities, because everyone was able-bodied at my school. I was the only one who was different.

My elementary years weren’t all bad, but many times I didn’t feel good. It was hard to have a disability when the other 800 children didn’t. Whenever I felt angry or sad, I would try to get back to a calmer mood. I never had any counselling. No one ever told me if you feel angry, there are things you can do, like listening to music.

Growing up I thought of myself as a storyteller, whether telling real stories or fictional ones. I was very big on movies, and I wanted to learn how to review them. I’ve just finished my second year in journalism at Humber College, and I’m learning how to tell stories in many different ways.

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How 'I became more than the kid in the wheelchair'

By Louise Kinross

Max Setka, 21, is in his second year studying journalism and history at Trent University in Peterborough, Ont. Max has a long history with Holland Bloorview as he was part of our integrated kindergarten program. We spoke about what it was like for him to transition to university with a physical disability.

BLOOM: What is your disability and how does it affect you?

Max Setka: I have arthrogryposis, and it mainly affects my legs. I wear ankle-foot orthoses every day to stand, and depending on the weather and how I’m feeling, sometimes I use a wheelchair. I used the wheelchair a lot last year when I was in residence. This year I’m often walking.

The campus isn’t completely accessible because everything was built in 1964. But all of the classroom levels are flat and there are elevators in all buildings except for two—and one of those doesn’t have classes in it. I managed relatively easily using the wheelchair last year.

BLOOM: What was the greatest challenge of moving from high school to university?

Max Setka: For me personally, it was discovering how to adapt to everything. I obviously was very excited, but then it was like ‘Okay, how do I get to this place or all these different places?’ There was also some general anxiety about being away from home. But I’ve gone to Camp Awakening for 10 years, so I was used to being away. It was basically: ‘How am I going to manage 11 months of figuring out how to get to places?’

BLOOM: Is speed an issue?

Max Setka: It is sometimes. I try to give myself a certain amount of time and not rush places. I’ve had a few times where I’ve come into classes late and I’ve apologized at the end and said ‘I’m not the fastest person,’ and that it might happen occasionally.

The big issue for me in residence was leaving myself time to plan ahead for what I needed for three classes, so that I didn’t need to rush back to my room in between classes.

BLOOM: Do you have any accommodations in class?

Max Setka: I get note-takers. I can type, but my hands aren’t the greatest at speed and coordination. In the first class the professor will ask if anyone is willing to type or write out their notes and submit to an online system. Having someone else’s notes at the end of the class or day is one of my accommodations.

BLOOM: Did you work with an accessibility office on campus?

Max Setka: Yes. They have an accessibility services office. You go to an orientation in July with them, before school starts, and they explain that you’ll be assigned an advisor who will help figure out what you need. Then at the beginning of September you meet with the advisor. My other accommodations are extra time for exams and I can use my computer for all exams.

BLOOM: Did you feel supported in your accommodations?

Max Setka: The support is less hands-on than in high school. But if I need anything, I just shoot my advisor an e-mail. All of my professors have experience dealing with things like this. Unfortunately, I’ve got one class where the person who volunteered to take notes stopped after the first two weeks. Luckily, with this class, my professor posts literally his entire lecture, so it’s not affected me as much.

BLOOM: Was it hard or easy to make friends in your first year?

Max Setka: It was fairly easy. You meet a lot of people in residence. Trent is very passionate about connecting people, so we did a lot of floor meetings and activities together. I didn’t have the greatest roommate. I don’t know if my disability was a factor in that.

BLOOM: Were there other students with disabilities on campus?

Max Setka: I noticed my first year that I was one of the few people in a wheelchair. But having gone to orientations at accessibility services, I found there were quite a few people who maybe didn’t have physical disability, but had invisible disabilities or learning issues. So I didn’t feel completely alone.

BLOOM: I guess Trent can’t advertise itself as being full accessible?

Max Setka: No. They’ve got some building that can’t be retrofitted because they’re so old. But they do advertise as the first university in Canada to have an MV1 van. It’s a small wheelchair accessible van you can book and it will come and take you from one building to the other.

BLOOM: What was accessibility like in residence?

Max Setka: I was in the one residence that has elevators. My room was slightly wider than average. One of the things that was an issue in the first week was pushing open the door and closing and locking it. They’re very heavy fire doors. So the school attached an automatic opener to the door and gave me a small key fob.

This year I’m off campus, and I started using Peterborough’s Handi-Van, which is like Wheel-Trans. Otherwise I have to take two public buses and they're not reliable.

BLOOM: I understand you’ve been quite involved in extra-curricular activities.

Max Setka: Last year when I was in residence I ran, and was elected, to the student government in my building. Our job was to get people involved and help them feel that they were a part of the college even if they’d moved out.

We met every other Sunday and had to do required office hours. I think personally for me it made me noticed, because I was always around, and people would say ‘Hey, you’re that guy, right?’ I became more than the kid in the wheelchair.

BLOOM: This year you’re reporting the university's hockey games.

Max Setka: Yeah. I’ve always been a great hockey fan and because I can’t skate with a disability, I always looked for different ways to be involved.

BLOOM: How often do they play?

Max Setka: Right now it’s Thursdays and Saturdays every week. I do the full recap, so I have to be at the game and watching every move so I can write it down. I take notes on my computer. The idea is that by the end of the game the recap is out so that if you didn’t see the game, you know what happened before the newspapers publish it in the morning. Anyone can go on the team’s website to read it.

BLOOM: Isn’t it hard to get everything down as the game is happening?

Max Setka: No. I’ve become really proficient with typing. I take my little laptop and type as the game’s going. Typing has really helped my hands to be able to do more.

BLOOM: Are you interested in sports journalism in the future?

Max Setka: Yes, this is exactly what I want to go into. I love anything related to hockey.

BLOOM: What advice would you offer a high school student with a disability who plans on going to university?

Max Setka: I’d say don’t let your disability define what you think you can do. If you want to do something, go for it. In my first two weeks in residence I was writing applications for student government, and putting up posters and campaigning.

The other thing is to keep good communications with your school’s office of disability or accessibility.

BLOOM: Have you faced any ignorant attitudes about disability at Trent?

Max Setka: I haven’t. University is a different place from high school. People admire that you’re there and you’re doing what you’re doing. In high school, you may have an assistant with you, and there’s ‘a special room’ for students with disabilities. In high school there’s the perception ‘He’s from the special room, he’s always got this person with him.’ Coming to university I’ve been able to find out, and be, the kind of person I want to be.

BLOOM: Do you feel you’ve changed a lot?

Max Setka: I think I've found myself. I’ve gone through rejections and acceptances when trying to do different things. For example, I applied to be an orientation week leader this past September, but I didn’t get accepted. But that didn’t stop me from trying out for other things, like applying for this position with the hockey team.

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A social worker who's lived the other side of rehab

'They tell me that it's different working with me'

By Louise Kinross

Gabriella Carafa is a social worker whose connection to Holland Bloorview goes back to her childhood, when she visited our neuromuscular clinic. Eleven years ago, Gabriella participated in Holland Bloorview’s The Independence Program, living for three weeks in a university residence to learn a variety of life skills. Since then, she’s worked as a youth facilitator at The Independence Program and at our Youth Weekend Retreat.

Three years ago she came on board as a social worker in our child development program, working with work with youth with cerebral palsy, spina bifida, spinal-cord injury, craniofacial differences and complex medical needs. She also provides social work support to young adults in The Independence Program.

BLOOM: What drew you into this field?

Gabriella Carafa: I wanted to be a social worker because I’ve always been interested in people’s emotions and supporting them to cope with their life experiences. I thought I could contribute greatly to working in children’s rehab because of my rich lived experience, in combination with my clinical skills.

My clients say it best when they tell me that I understand things and they don’t feel like they need to explain as much to me. They don’t have to explain about the frustrations around accessibility, or how hard it is to go out with your friends, because I understand. They tell me that it’s different working with me.

BLOOM: What are some of the common issues they bring to you?

Gabriella Carafa: The common issues are around acceptance of disability and self-esteem. Anxiety is a huge one and depressive symptoms, even if they don’t have a formal diagnosis. As they’re getting older, they recognize more things that they can’t participate in in the same way as their peers.

BLOOM: Do they also recognize the stigma of disability more?

Gabriella Carafa: Yes. If it’s not overt, it may be that they’re not invited to parties, because people assume they can’t go up the stairs, for example.

It’s not one of these things, but a combination of them: dealing with anxiety and depression and feeling like they don’t fit in or it’s hard to fit in.

BLOOM: What is the greatest challenge of your job?

Gabriella Carafa: My greatest challenge is supporting youth with complex medical and cognitive disabilities in their transition to adult services. In the adult realm, there are long wait lists for services and funding. For families who maybe had funding in the children’s system for respite—that ends at age 18.

Sometimes I feel helpless. I try to make families aware of all of the funding changes as soon as possible, and look at ways they can manage by increasing their support network and connecting with other families to advocate for system change.

BLOOM: What do you love about your job?

Gabriella Carafa: So many things. I think social work is a privileged profession. I’m a big believer in being vulnerable and being real, and in social work most of the time you see people at their most vulnerable, when they’re going through a tough time. I get to witness the strength of clients and families.

I ask those questions that other professions may not be asking, like ‘How are you coping?’ or “What has the impact of the diagnosis been on you and your family?”

You’re normalizing feelings they may not want to admit to other people.

Parents may be ashamed that they’re not coping well, and you create that space where they can just be honest without guilt or fear of judgment.

BLOOM: How do you cope with some of the emotions that come with your work?

Gabriella Carafa: I am working on not taking the work home. That doesn’t mean I don’t care. Making sure you have activities you do outside work that you enjoy is important. I also have a lot of social worker friends—some here and others not—and we can lean on each other for support.

What’s hard is when families think I should do more to change all the systems in adult services. When families want me to do more than I can, it’s hard on me.

I feel proud that I do this work and I feel I make a difference by creating a safe space and providing families with the information they need. They feel they have someone in their corner.

BLOOM: I know you also supervise social work students.

Gabriella Carafa: I hope social workers coming into the field have a better understanding of disability, and I work hard to provide that both as a social worker and as a person with a disability. I can educate future social workers around disability and the stigma that comes with it. I support them to develop an anti-ableist practice.

BLOOM: You said your understanding of independence has changed since you went to The Independence Program as a client.

Gabriella Carafa: I recognize that our traditional ideas about independence aren’t possible for every client, so why are we thinking about independence this way? With medical advances, a lot of youth with complex needs are living longer.

Until I began working as a social worker here, I didn’t have a thorough understanding of the wide variety of disabilities our clients have. Most of the youth I work with have complex needs. Many won’t go to post-secondary education, move out on their own, get a job, or volunteer, and that’s okay.

Even the people who are going to The Independence Program have changed. We have more people with cognitive, rather than just physical, needs. These are individuals who may never live independently in the traditional sense. But that doesn’t mean they can’t build skills and recognize when they need support.

BLOOM: I was speaking with a colleague whose family is from Ethiopia. She said our obsession with ‘independence’ as the end goal of life is hard for them to understand.

Gabriella Carafa: Western ideas of independence are not reflected in many of the cultures we serve here. And whether or not you have a disability, people are living with their parents, spouses, children and grandparents, and the families are interwoven and interdependent. Why is that a bad thing?

On the other hand, we do have situations where the youth wants to be independent, but culturally the family doesn’t believe in that. They don’t want their child to move out.

Some parents experience grief when they realize traditional independence may not be possible for their child. However, that doesn’t mean there aren’t other possibilities for having a great life as an adult. That’s why we need to continue having transparent conversations with our clients and families that explore what is possible.

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

Gabriella Carafa: Adult services as a whole. I think we do a really good job in the children’s system, and adult services need to reflect that. I wish the adult systems were better connected and that adults with disabilities had more funding available to them. And I wish the systems reflected people with diverse identities and needs. Ha—that’s a lot!

BLOOM: What have you learned from families?

Gabriella Carafa: That they’re resilient. That’s what I’ve learned.

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a love letter to the one i work to forget

Last week we ran a poem called thoughts that live in the hole of my brain by 17-year-old Lexin Zhang. “When I was young, I thought about my disability as being a literal hole in my brain,” says Lexin (above), who has cerebral palsy. Following is a sequel poem Lexin wrote. At the end, she explains more about why she wrote this piece.

a love letter to the one i work to forget (cp)
By Lexin Zhang

The moment I took my first gasping breath
You imprinted onto my mind
And you haven’t left me since
Every one of my actions are wrapped up in your fingerprints

In the world we were born into
People were trying to save me from you immediately
Therapy attempted to have me forget the feeling of you in my bones
But we were born to be together
For the rest of our lives
And no one else’s opinion really matters
(not even mine)

In elementary school, I was stopped in the hall by a teacher I’d known for a while
He said ‘hey, you look like you’re walking better, keep it up’
I’d hear it from doctors—family members too
And I couldn’t help but smile
Every single praise I got in spite of you
Buried you deeper into a hole
I was trying to muffle,
To snuff you dormant
So you’d be easier to cuddle
I tried to love you, but I couldn’t—
At least, not properly

Despite the needles
My mouth still struggles around your name
Your presence soaks my tongue, tinted in your tone
I never really had agency over my words anyways
My mouth still morphs, shapeless, to fit with lips it never got to kiss

I try not to look at pictures
Because we always seem so stiff, like we painfully don’t fit

They say that love isn’t gazing at each other
But rather looking outward, together
In the same direction
We never did that—
Too busy analyzing body complications
Trying not to fall too far away from the ground
Stepping over and on each other’s feet

We’re so close and you’re so unique
That sometimes, when I introduce myself
All people see is you, and not me
Sometimes, I too lose myself in the vast landscape of you

But we were born to be together
For the rest of our lives
And you’re determined to stay by my side
Convinced that we don’t need to hurt all the time

I think I am writing this to let you know
That I am trying to love you
Love the jagged lines and silhouettes that stretch out from our limbs
Our small shaky hands spread out, straining impossibly wide
Eager to prove just how much they can catch
The twist and curl of toes and wrists and fingers
Latching at nothing in particular
Love the turns and churns of neck and face to form blobby cracked words
Love how our sound has to rumble through the throat to burst into clumsy existence

I’m trying to love what we sculpt
Every bone protrusion is a new mountain in the landscape
Each elongation is a paint stroke in the sky
Tense hard muscles bloom out rolling hills
I just have to trust that it’s quite the view if you find the right window sill

I caused us pain birthed from both dissection and neglect
I need to listen more often
You’ve hurt me too but
In truth, you make me a better person
More understanding, hardworking,
More clear of my values
Isn’t that what a good relationship is supposed to do?

I worked to forget you, drown you, even
I’m working to love you, and not feel so threatened

Lexin

___________________


BLOOM: Why did you write this poem and how does it relate to the first?

Lexin Zhang: This poem was me trying to reconcile with my disability and all the negative thoughts I had towards it. I wrote the first poem for school, it was like a chance to purge my recurring thoughts. This poem came when my social worker suggested writing an alternate narrative. The poem is a step forward. It’s me growing and evolving and recognizing that the thoughts I had before weren’t necessarily healthy thoughts.

Throughout the poem, however, it’s clear that it isn’t solely positive. There’s a push and pull between dislike and love. Even as I was writing it, it was hard trying to love my disability. I’m admitting that I’m not treating it properly and that, in turn, means I’m not treating myself properly.

Personifying a part of yourself that you’re conflicted with is common, at least from the poetry I’ve experienced. I made it sound like I was speaking about a soul mate, someone I was trying to love, and in a way I was. Honestly, I liked the analogy; it worked in so many ways. Personally, it made it easier for me to engage with my disability.

BLOOM: The poem really speaks to anyone who struggles with parts of themselves.

Lexin Zhang: Ultimately, it’s about my relationship to my physical appearance. Regardless of disability, everybody has something about themselves that they don’t fully embrace at first. It’s kind of like that battle to try to love every part of yourself. Self love, I feel, is something we learn to do. It’s never perfect. There are days when it’s harder than others. Everyone tries to be better—this is my way of doing it.

BLOOM: You just finished the Youth@Work program at Holland Bloorview. This is a summer program where you do work placements in the hospital, as well as attend workshops and meet with a job coach. You said Youth@Work influenced how you feel about your disability.

Lexin Zhang: Yes. After doing Youth@Work I feel I’ve reconciled even more with my disability and, I don’t know another way to phrase it, but I’m not as ashamed of it in a way. Youth@Work made me realize I could present myself with a disability and it wasn’t anything I had to hold back. As I say in this poem, I wasn’t trying to muffle it. I wasn’t trying to make it quiet and not noticeable.

BLOOM: What was it about the program that led you to feel differently?

Lexin Zhang: The environment is safe and it feels like I can do things and be confident with who I am—every part, not just selected sections. I can push forward who I am as a whole, instead of just the parts I’m okay with, [while] blocking the parts I feel are negative.

The staff I worked with gave me a sense of ease and safety. I can’t even remember how I was before this. I don’t know if it’s just because when I’m here I feel more confident about myself, but I hope that transfers to the rest of my life.

BLOOM: So you think there will be a long-term impact?

Lexin Zhang: I think this will change how I view certain things forever. It’s a weird feeling to know you’re in a moment of vital change, in regards to who you are as a person.

When you’re surrounded with able-bodied people who are working so hard to achieve in school, you forget that it’s okay to be disabled or different. I’m trying so hard to line up with them, that I kind of forget that it’s okay to not be with them at the same level.

Being surrounded with people with different abilities at Youth@Work, you remember that you don’t need to be doing the exact same things as everyone else. Youth@Work reminded me that it’s okay to be disabled in every sense of the term, and it was an odd epiphany, a pivotal moment in my mind.

I know this will change the way I act or perceive myself in relation to society or other people. I won’t be able to fully grasp how the experience has affected me until I’ve seen all of it come to fruition later on in life.

Even though this poem wasn’t written too long ago, I feel like the way I feel now is different. I’m really thankful for that.

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A doctor reveals her hidden disability

By Louise Kinross

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Paige Church: Absolutely.

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

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

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

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

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

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

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In Brazil, a 'disabled chick' draws about stigma, love

On her blog, Vanessa Krubniki tags this comic under "love," writing: "...I have worried myself sick about how I am supposed to convince someone to date a disabled chick who can't even tell a joke. You might think that there are people out there who enjoy a darker approach to things and I supposed that is true, but the fact is, everyone likes fun people. And I, I have too much real life in me, too much blood under my fingernails."

By Megan Jones

When Vanessa Krubniki creates a comic, it’s more than just a drawing: it’s a lesson, a memoir, an emotional outpouring. The 23-year old psychology student from Curitiba, Brazil has spinal muscular atrophy, and uses her artwork to capture what life is like for young women living with physical disabilities.

The comics follow a character named “Cassie Q,” detailing her interactions with family and strangers and her thoughts about everything from love and work to depression, stigma and self-esteem.

Originally a painter, Vanessa first tried to her hand at drawing comics about a year ago. “It started off as a game,” she says. “Something to do for fun.” But as she showed more friends her work, they encouraged her to post her drawings online.

Today, Vanessa regularly shares her comics on her blog, which has gained followers from Canada, the United States and Brazil, among other places.

She readily admits that while her character has a different name, they’re very much the same person: everything that happens in her comics has happened to her in real life. For that reason, her artwork is extremely personal. It allows her to vent about the things that frustrate her, and helps her to process the circumstances that make her sad.

The personal nature of her work has resonated with readers. Vanessa says she’s spoken with other young people with disabilities who have connected with her online after checking out her blog. “Lots of people say the comics make them feel understood,” she says. “It’s really special to hear that.”

Vanessa knows what it’s like to feel like an outsider. In Brazil, she says, disability is largely misunderstood, and many people with special needs lack support.

She’s not the first to make this observation. Cities in Brazil have long been criticized for their low level of physical accessibility. According to a 2015 BBC article, only seven per cent of working-age Brazilians with disabilities have completed any kind of higher education, and only two per cent are a part of the workforce. And as NPR reported the same year, a poll conducted by IBDD, one of the country’s disability advocacy groups, revealed that a staggering 80 per cent of people with disabilities didn’t feel like respected citizens in their home country.

When these factors pile up, Vanessa says, many young people with disabilities wind up feeling alone. She herself isn’t in touch with any local disability activists, and says she only has one other friend with special needs who she talks to regularly.

In order to cope, she, like her readers, has turned to the Internet to connect. Vanessa says she reads articles by disabled journalists which help build up her own activist framework.

“Hearing life stories from the perspective of someone with a disability validates my experiences,” she says. “I often feel very disconnected, but reading these things, I get a sense of belonging, and I can connect my experiences to a larger oppressive system.”

Knowing that others are looking to her comics as a point of relation, Vanessa fears that her art isn't uplifting enough. There’s a pressure on people with disabilities to be inspirational, she says, particularly if they’re building a public presence. But a sunny outlook isn’t always realistic. There are days when Vanessa finds it difficult to be hopeful, and she doesn’t shy away from that in her work.

As a result, her comics can sometimes seem bleak. In a description that accompanies her post “The Complicated Life of a Bug,” for example, she writes: “Everyone has their little web of aggravators, things that stop them from moving forward…. Sometimes with disabilities, this web gets so detailed and so layered that it might seem impossible to move. I fear that one day it will be impossible to move.”

With posts like these, Vanessa says she occasionally worries that she’s reinforcing the idea that life with a disability is automatically a bad one. “I think many of my experiences with a disability have been negative so far,” she says. “But that’s not how it has to be. Society has to change.”

The topics she addresses most frankly, perhaps, are sex, intimacy and love. Like many other 20-somethings, the concept of dating takes up a lot of mental energy: one of her biggest hopes right now is that she’ll find a romantic partnership soon. Unlike most though, she doesn’t feel she can’t openly discuss her needs with very many people. In fact, most people, Vanessa says, assume she doesn’t care about sex or relationships.

“It gets overwhelming when you have a very central longing and you can’t talk about it,” she says. “People with disabilities don’t really have room to address those needs. My comics are a way to bring that out into the open.”

Whether it’s through expressing sexual desire, dissatisfaction with social structures or frustrations with family and friends, Vanessa encourages others to elevate their own voices.

“Young people with disabilities should take their power back,” she says. “Standing up for yourself is hard and can be very stressful. But sometimes you have to act against the status quo. If something isn’t working for you, don’t just let it go.”

The comic below, called Cassie's Folding is tagged under "depression." 

"In my life I have been folded. It's kinda like when it's simply not okay to be you, and not even knowing what to say or what to dress, because any sense of confidence has been systematically chopped off. In my life I have been folded. In half, and half, and half, and half. And what I had left was a Q for a signature."

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This educator's ties to Bloorview span three generations

By Louise Kinross

Debbie Sutherland’s connection with Holland Bloorview goes back three generations. Her grandmother Beatrice worked as a cook at the original Home for Incurable Children. Her mother June developed polio as a toddler and had her braces made at the Hugh MacMillan Rehab Centre. Debbie has worked as an educational assistant in the Bloorview school for 11 years. BLOOM talked to Debbie about her work here, her family’s connection to the hospital and a community respite program she’s developed with Bloorview School teacher Shelley Neal.

BLOOM: What’s a typical work day for you?

Debbie Sutherland: It starts with getting kids off the busses. It’s a good way to greet them and say good morning and ask how their night or weekend was. Then we do mobility. So we get the kids on bikes or in their walkers and they go all over the school and centre. On Tuesdays I do bussing and 80 minutes of mobility, so I’m walking for 120 minutes. I gave up my gym membership!

BLOOM: Are you in one class?

Debbie Sutherland: I’m in the library this year. In the past, I’ve worked in integrated education and therapy classes, the autism class, the integrated kindergarten and the class for children with complex needs. In the library I now work with all of the kids from junior kindergarten to Grade 12.

BLOOM: What are some of the things you do in the library?

Debbie Sutherland: I check the books in and out and assist the librarian with the classes. We have eight classes of little kids once a week and the older kids come twice a week. With the younger students we work in groups with a white board. So we may download a book onto the board and read a story and get the kids to interact with it by touching the board or hitting a switch. With the older students we’re teaching them how to do research and use Google and the Internet safely. They may be choosing books for projects.

BLOOM: Had you heard about Holland Bloorview through your grandmother’s work here?

Debbie Sutherland: When I was really little my grandmother said she worked at the hospital with the kids who are crippled, like my mom. That’s the term they used then. My mom had polio at 28 months and is now the oldest surviving polio victim in Canada. My grandmother was one of the original marching mothers of the March of Dimes. They used to put something sticky down on the street and people would come and stick dimes on it. She worked at Bloorview for at least 20 years. She was an amazing cook and the people there loved her. She said the kids were like my mom—they couldn’t get around very well or their parents had left them so they had to live there.

BLOOM: How was your mom affected by polio?

Debbie Sutherland: Her right leg is paralyzed and her left arm. She’s now in a wheelchair, but until I was 14 she walked. She had a really bad limp. I remember being teased at school about how my mother walked and how embarrassing it was. My mother told me that when she first started school the other kids would push her down to watch her struggle to get up. She had iron braces on her arm and leg. In the cold, her braces used to snap. One of the doctors told my grandmother that she should go to a special school, so she went to the Wellesley school, which later became Sunnyview.

BLOOM: Did your mom talk to you about disability?

Debbie Sutherland: She talked about having polio. We lived in a side split that wasn’t accessible so she had to go up and down the stairs every day. I remember the first time someone said ‘Your mom is disabled’ it was a shock. I said ‘What do you mean?’ It was always just a part of our life. My mom is the second oldest of seven and when she was young she wanted to ride a bike. The doctor said ‘You can’t.’ So she told her stepfather and he took the brace off her leg and put it in the cement foundation of our house. Then my mom learned to ride a bike and she got around everywhere on this bike.

BLOOM: Did she have a lot of medical interventions?

Debbie Sutherland: They did a lot of experimental surgery on her back. They’d say ‘Wow, that kid is really tough. She made it through and she’s the first one.’ She had humungous scars down her spine and across her knee.

The doctors loved to use her as a teaching tool because they almost never saw polio victims. So it was never just one doctor, but a doctor and a whole bunch of interns watching her. I remember sitting in the waiting room when my mom got her first wheelchair. The doctor told the group that my mother could never have children because her muscles couldn’t hold a pregnancy. She said: ‘You might have wanted to tell me that because the youngest of my five is in the waiting room.’ The doctors were always amazed that she had survived because most kids with polio back then didn’t.

BLOOM: How did you first work in our school?

Debbie Sutherland: I came on a placement to Bloorview at the Leslie site. And when I walked into the school I thought ‘Oh my gosh, this is where I need to be.’

BLOOM: What was your first position?
Debbie Sutherland: I was an EA in a junior kindergarten IET class, so it was the kids’ first experience at school. I loved the kids.

BLOOM: What was most challenging?

Debbie Sutherland: The crying. JK kids cry a lot and for a long time. I think that’s particularly true for kids with disabilities who’ve been sheltered or they’ve been with their parents from day one and never separated. It made me recognize that these parents really needed a break.

Three years ago Shelley Neal and I started a respite program that runs out of our church. It’s four hours of free respite once a month and we take babies to age 13. It’s called rEcess.

BLOOM: How does it work?

Debbie Sutherland: It’s volunteer-driven. We have doctors and nurses and therapists and EAs and teachers and our church youth are involved. We have 67 volunteers currently, and 44 kids registered, with 15 families on a waiting list. It runs on Saturday night. We feed the volunteers and talk about what’s going to happen that night, who the kids are, and they read about the kid they’ll work with. Parents show up at 5:30. We take all of their kids, including the siblings, so the parents get true respite.

The idea is that the parents go out on a date. We want to know where they’re going and make them accountable. The parents are starting to form little groups who go out for dinner together and talk. They’re forming their own community.

BLOOM: Where is the respite held?

Debbie Sutherland: Kingsway Baptist Church in Etobicoke.

BLOOM: What do the kids do?

Debbie Sutherland: We run a full program with stations. There’s a big-muscle adventure, we have a GeoTrax train set that covers the entire floor and is remote controlled. We run an art therapy program, puzzles, games, sensory activities. We change all the kids, put them in PJs to watch a movie so they’re tired and ready for bed by the time their parents come at 9:30. We have all kinds of adapted seating.

BLOOM: What are your hopes for the program in the future?

Debbie Sutherland: We have a big vision. We want to build a complete, full-service respite centre, so that instead of running respite once a month, we can do it every week. The parents will never, ever be charged.

I’m going to school one night a week at the York Entrepreneurial Development Institute to learn how to register our program as a non-profit and make it sustainable. The professors love our program. rEcess has been chosen to be the group project every week and our business model is just about done. We own the property beside the church and we’d like to take down an old, inaccessible house there and build a four-storey building that would house our complete respite centre, including an overnight component.

The professors at York suggested we should rent the second floor out to occupational therapists, physios and doctors at below market rent in exchange for them providing some free services for kids who can’t afford it. Their rent would make the program sustainable.

BLOOM: How do you manage to juggle your work here and your family and the respite program and school?

Debbie Sutherland: Sleep is highly overrated! I work at Bloorview, I tutor once a week and do respite twice a week and I do rEcess. I surround myself with amazing people, like Shelley Neal and Peter Rumney. Peter volunteers almost every time recess runs. He's our medical contact.

BLOOM: What do you get out of your work with kids here and in the respite program?

Debbie Sutherland: This is my niche in life, this is where I love to be. I adore the kids. They wouldn’t have to pay me to do this job. In my work with rEcess I get to see the light come out in other people. I get to empower people to be leaders and to understand awareness and inclusion.

BLOOM: I understand you’re trying to expand the respite program?

Debbie Sutherland: We’re looking for another 40 volunteers to run a second night. We could use nurses and doctors and anyone who wants to volunteer—even if it’s just once a year. We’re also looking or people to sit on our board.

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