By Louise Kinross
It’s a simple ritual, but one of Silvia Souto’s greatest joys. “Opening the door of the classroom at Play and Learn, and seeing the faces of the children—so happy and eager to come and play in our program—that is pure joy,” she says.
Silvia is an early childhood educator in one of Holland Bloorview's two nursery schools, which are located in the community. Play and Learn includes children with and without disabilities. Silvia first worked as a volunteer at our old hospital site in 1999, after moving to Canada from Argentina, where she was born.
In April, Silvia and Play and Learn co-worker Isabel Zatti made a trip to Macao, China, where they shared Holland Bloorview’s vision of inclusion with early learning educators from 80 countries. “Isabel and I felt the voice of inclusive programming was not heard at other conferences we'd attended. We wanted to do something about it,” Silvia says.
BLOOM: How did you get into this field?
Silvia Souto: After studying psychology and education at university, I worked in special education services in Argentina with children from infants to age five. When my husband and I came to Canada, and were trying to improve our English, my ESL teacher encouraged me to look into Bloorview. You will talk to people who have similar interests, she said, and it will help your vocabulary. I came for a visit and was accepted as a volunteer in the child life program doing bedside play.
I vividly remember the nursing station. Cara Sudoma was one of the nurses there, and she would come in and out, full of energy. Later I did an internship in the child life department, was hired at Play and Learn’s summer camp, and accepted a part-time and then full-time job. I did my equivalency and got my credentials as an early childhood educator.
BLOOM: What is a typical day like now at Play and Learn?
Silvia Souto: The day is 'go, go, go,' with no pause button. The program starts at 9, so we're there at 8:30. It’s a high-quality program, which means we need to carefully plan and prepare. We do a lot of hands-on, sensory activities and art. We want the children to express themselves and explore freely. If we see something they’re interested in, we’ll include that into the preparation for the following day. We follow the children's lead.
We take early literacy and play very seriously, so we do a guided learning circle every morning and use stories to reflect on what the children are doing in their play, and their interests. When we tell the stories, we use props to catch the children's attention. Our guided learning circle is an opportunity to learn new words, make connections between stories and play. It's an invitation to join in with peers and share the joy that comes with listening to a story.
A typical day happens inside and outside the classroom. In addition to providing children with a rich and meaningful learning environment, we discuss and document their progress, brainstorm strategies to support their participation and learning, talk to their families, and meet with our team of therapists.
BLOOM: How many children are in a group?
Silvia Souto: I work with 10 toddlers and one other teacher. We have one group in the morning and one in the afternoon. We also have volunteers and sometimes co-op students in the classroom. We have a team of therapists who support us in the classroom. They develop a plan of intervention and we find ways we can include it within the child’s play, so it doesn’t look like therapy.
BLOOM: What’s the greatest challenge?
Silvia Souto: Compared with the challenges our families are facing, I don’t feel I have a right to say it’s challenging. I enjoy it very much. In order to support children and families I do have to take care of myself, because I need to be present constantly in my interactions. It’s a demanding job physically, and you have to be emotionally fit. Sometimes I have to remind myself about what you're told on the plane—to put the oxygen mask on yourself first.
BLOOM: Is there anything specific you do to manage stress?
Silvia Souto: We have a very tight and absolutely supportive team that I can always go to, if I need to. I know I can always count on them for guidance, or support, or for taking a break. When you trust your team in that environment, it’s easier to manage stress.
Personally, I like skating in the winter. I keep my skates in the car and sometimes I’ll stop at the local rink and do a couple of laps. The other thing I do to take myself completely out of my worries is jigsaw puzzles. If I need to concentrate on something, I’m going to open a puzzle box. There’s something I love about going from complete chaos to finding the perfect fit.
BLOOM: What’s the greatest joy of your work at Play and Learn?
Silvia Souto: The trust the parents put in us gives me an immense amount of happiness. For some of the families, our nursery school is where they leave their child for the first time. The other element is witnessing how inclusion works—seeing the interactions of the children, and thinking we are planting the seed for a more just society.
BLOOM: What qualities do you need to be successful in your role?
Silvia Souto: Energy, definitely. It’s a physical kind of job. You need to be someone who can connect, who can be trusted to develop meaningful relationships with the children and their families. You need to have a solid knowledge of child development. You have to understand children in the context of their families. You need to have a playful soul, to think as a child, and to be creative.
BLOOM: How do you get your energy?
Silvia Souto: At the end of the day, I like to say I’m enthusiastically exhausted.
BLOOM: Recently you and Isabel Zatti, Play and Learn’s site facilitator, went to speak at a conference in Macao, China. Can you explain?
Silvia Souto: Isabel and I went to the World Forum on Early Care and Education, which is a global exchange of ideas on how to develop high quality programs in early childhood. This year there were almost 800 people from 80 countries.
Isabel and I felt the voice of inclusive programming was not heard at other conferences we’d attended. We wanted to do something about it. This was the perfect venue, because with so many people, our voices could be amplified.
BLOOM: What was your workshop about?
Silvia Souto: We presented on a panel on inclusion, from infancy to adulthood. We presented with educators from South Africa and India and Hong Kong. We talked about how Holland Bloorview is a hospital, and within the hospital we have early learning programs like the nursery schools. We took some of the messages from our Dear Everybody campaign, and showed how we embed these messages into the work we do. For example, ‘If we can’t include everyone in a game, we’re not playing it right.’ We gave examples of how we adapt activities and toys to make sure all children can participate.
BLOOM: How did people respond?
Silvia Souto: They were fascinated that a hospital had a community nursery program within it, and that early childhood educators could work in a hospital. They hadn’t seen that before.
We made connections with a lot of people. We feel our nursery programs are a model for social change, and we have to invest in those formative years to build a more inclusive society. We wanted to spread the idea that if we support children in developing an acceptance that we’re all diverse, and do it at an early age, it’s much easier than trying to change behaviour later on. The interactions that happen in our programs are so natural.
BLOOM: If there was one thing you could change in children’s rehab, what would it be?
Silvia Souto: I think inclusive community programs like the ones we have are key. Play and Learn is unique in that we have a lot of support. We have access to training, to other professionals, and we work as a team. But that doesn’t happen in schools, or even in other childcare centres that are working towards inclusion. They may have resource consultants, but I'd like to see a much higher level of support in daycares and schools.
By Louise Kinross
Cliff Lee first came to Holland Bloorview as a seven-year-old, when he was hospitalized for a brain injury following a school-yard accident.
Nineteen years later he’s back as the hospital’s kids’ feedback specialist, here to interview children and youth about the care they’ve received.
“What’s important about what we’re doing now is that we’re giving kids a voice,” says Cliff, who works as a medical secretary and studied psychology at the University of Toronto. “Growing up, at my appointments, the doctors and clinicians always talked to my parents a lot and I felt like I didn’t have a say in my own health decisions.”
Cliff is actively seeking inpatients and outpatients to participate in a 30-minute survey that asks questions like “How safe do you feel at the hospital?,” “Does your care team speak directly to you?” and “Is the care you’re getting helping you meet your goals?”
Cliff says he wants to interview a range of clients, including children who don’t communicate in conventional ways and those who need an interpreter. Parents are able to sit in on interviews.
Cliff hopes to do 50 interviews this summer, and another 50 in the fall. To participate, kids or parents can e-mail Cliff at kidsfeedback@hollandbloorview.ca to set a time.
In addition to being a client, Cliff has volunteered in recreation therapy with our inpatients, acts as a youth mentor and also participated in our Youth To Work program. “Holland Bloorview feels like home,” he says.
When Cliff was an inpatient, he says his primary emotion was one of frustration. “I wanted to go outside and do everything other kids were doing, but I was confined to a hospital bed, then I progressed to a wheelchair and then a walker. I had a bit of cognitive delay that made things like math difficult later on.”
At the time, Cliff says he wanted “to be normal, like other kids.”
Now, he sees his differences as part of who he is. “I need to learn to adapt to what I’m good at and to the things I might struggle with physically or cognitively. But everyone has strengths and weaknesses.”
As a former client, he’s “excited to help give kids here a voice in terms of how we’re doing and, most important, how we can improve.”
Cliff can be reached at kidsfeedback@hollandbloorview.ca or, if you see him in the halls with his iPad, introduce yourself.
By Louise Kinross
Recently BLOOM reported on research about the role of hope and the invisibility of dads in children’s rehab. This was produced by Parenting Matters, a team funded by the Canadian Institutes of Health Research to study what it means to parent kids with disabilities like Down syndrome, autism or cerebral palsy. Scientist Lucy Lach, an associate professor in the School of Social Work at McGill University, is the co-principal investigator of Parenting Matters. She also has a unique connection to families at Holland Bloorview and has raised two children with significant learning disabilities. She’s working with Dr. Peter Rosenbaum from McMaster University and Dafna Kohen from Statistics Canada. BLOOM interviewed her about her work.
BLOOM: In 1980 you worked as a summer student at what was then the Ontario Crippled Children’s Centre. Was that your first exposure to disability?
Lucy Lach: Yes, I worked in accounts payable and purchasing. I had had one singular experience with a student in a wheelchair at my high school, but during that summer I got to see and know kids with a variety of disabilities who were receiving services there. I was 20 years of age and was completely taken with the culture of the institution. I don’t think I realized it at the time, but in retrospect it is here that I learned how special the culture of pediatric centres is.
BLOOM: What was that like?
Lucy Lach: I became caught up in the culture of what is now Holland Bloorview—in how positive it was and how the kids were treated by staff and how special the staff were. It was a wonderful place to be as an emerging adult. During that period I began doing some volunteer work at the Bloorview Children’s Hospital at Leslie and Sheppard.
BLOOM: What did you do?
Lucy Lach: I just hung out. I was there to be a peer. I played with the younger kids and took the older ones outside to engage with the environment. This allowed me to begin to get to know these young people whose ways of communicating and thinking were different from what I had experienced. Although these lives were viewed as tragic and unfortunate, I learned that there was a different story to be told. These children had a liveliness and a beauty that I had not been exposed to or fully appreciated before.
BLOOM: As a social worker at SickKids, you later ran support groups for parents of children with intractable epilepsy at Bloorview. What did you learn from that?
Lucy Lach: How our systems are failing them. I learned about what the kids’ and parents’ struggles were in day-to-day life: trying to balance work and appointments and ensuring their kids were safe, and managing these very unpredictable seizures, sometimes at night or at school.
I learned how the complexity of what they went through on a daily basis was missing in the literature and in the snapshot of time we had with them in the clinic. When they came to see the neurologist they would have 15 minutes at most.
The support groups helped me to get at that deep experience and to ask questions of them when they were in clinic in a different way—to elicit stories not just of despair or challenges, but also of how well they were managing. And it made me feel humble as a practitioner to realize that I didn’t always know how I could be helpful to people who were referred to me. I learned to feel okay approaching parents by saying: ‘I don’t know how I can be helpful, but help me understand what concerns you the most, and what you would most like to talk to me about.’
BLOOM: Working with this population must have been difficult.
Lucy Lach: It’s so very hard for them, that’s absolutely true. But you know what? I also heard over and over again how they figured that out, how they managed it. So the story about grief and sorrow was also a story about amazing accomplishments, abilities and triumphs. In fact, I’m more prone to tell you about the latter. These are parents who didn’t allow the unpredictability of these events to rule their family life. They incorporated them somehow.
One of the most important things was to engage a community of peers. In the best-case scenario, when a child had uncontrollable seizures, one of the factors that allowed parents to say ‘Okay, you can do this’ was if their child had friends who knew what to do in the event of a seizure to ensure they were safe.
Safety was a primary concern. Sometimes professionals involved would make judgmental comments about how overprotective and indulgent the parents were. That drove me nuts.
Often school was a huge issue. Parents were told the student could come back when their seizures were under control, but the seizures would never be under control. So a significant part of my role was advocacy to help school understand that sometimes you just had to manage the seizures and the behaviour as opposed to eliminating them.
BLOOM: What were the rewards of this work?
Lucy Lach: The rewards were daily because I was there so long that I got to see kids grow and to see parents grow to become amazing and effective advocates.
BLOOM: Why did you decide to move into the research world?
Lucy Lach: At the time I was working in the epilepsy clinic, the research was filled with assumptions about families’ experiences of their child. It was mostly very negative, as it continues to be today. If you skew research questions so that they enquire exclusively about negative experiences, you will inevitably obtain answers that contribute to a story about trauma, negativity, pathology and distress. But if you ask parents if having a child with a disability was, in any way, growth-enhancing, some will tell you you’re ‘off your rocker’ while others will thank you for the question.
What I’m trying to say is that research contributes to a story about families and this story is a social construction of some reality that ends up being what people believe as being ‘true’ about themselves. If you document the complexity of the story, or a different dimension, the plot thickens.
BLOOM: When you first got involved in research it was about outcomes for kids following epilepsy surgery, right?
Lucy Lach: Yes. Although the neurosurgeons and neurologists were extremely hopeful about the promise of this surgery, our clinical experience was slightly different. The procedure was successful in improving seizure control, but families didn’t see the changes in quality of life they had been led to expect: they didn’t see changes in their child’s cognitive skills or behaviour. So my colleagues and I designed a rigorous study to generate findings about outcomes we could be more confident in.
This meant we could share fully with parents, before they consented to surgery, that this procedure will not significantly alter your child’s cognitive skills and behaviour one to two years out. We were happy to be able to be as truthful and honest as we could during the consent procedure and that consent now involved full disclosure.
BLOOM: That must have been incredibly disappointing for families.
Lucy Lach: Absolutely. Parents would come back after the surgery and say ‘now can you do some surgery on my child’s behaviour? Can you fix that?’ There, the idea of ‘managing’ as opposed to ‘fixing’ was really important. Maybe we can’t fix it, but we can help by better articulating and adjusting your expectations so that you can better manage your reactions.
BLOOM: Why is the Parenting Matters research needed?
Lucy Lach: The question that drove that whole enterprise for me was another taken-for-granted assumption in clinical practice about overprotective parenting and whether it was damaging for kids with neuro-disabilities. There were, and are, assumptions about how terrible it is that parents don’t allow their child with disabilities to do certain things, and if only they would stop hovering, then their child would be okay. My hunch was that this was a complete oversimplification of the complexity that families faced.
So Parenting Matters has generated quantitative and qualitative data that has begun to make the narrative about these children and families more complex and stir up a bit of controversy about previous assumptions.
BLOOM: What are the main Parenting Matters projects?
Lucy Lach: One is a systematic review of the literature on parenting of children with neuro-disabilities. A second is analysis of a large Canadian population-based dataset on parenting and rates of separation and divorce among parents of children with these disabilities.
The third is an environmental scan of policies and programs for families, where we provide links to information on services, respite care and tax forms by province.
The fourth project is a clinical study of 263 Canadian children with various disabilities. The data was collected at Holland Bloorview, as well as in Montreal, Calgary and Edmonton. Parents completed measures about the complexity of their child’s disability, their behaviour, quality of life, family environment, co-parenting relationship and marital system, and adequacy of social support. That’s where we also looked at overprotective parenting and quality of life.
BLOOM: Do you have results from the large dataset?
Lucy Lach: Yes. We learned that parents who have a child with a neuro-disability don’t differ from parents who have a child without a neurodisability (or problematic behaviour) in how positive and consistent their interactions are with their child. The downside is that they experience themselves as more ineffective as a parent.
BLOOM: Why do parents of kids with neuro-disabilities view themselves as less effective?
Lucy Lach: That's a really great question. That measure, of effectiveness, also taps into how negative parents feel about their parenting relationship so I think it has to do with expectations they have of themselves and of their child.
BLOOM: Do you mean that parents of kids with disabilities may be great parents, but they may have unrealistic expectations about their child that make them feel inadequate? Or, do you think that in general our culture’s tendency to value achieving certain milestones influences how parents feel when their child doesn’t?
Lucy Lach: All of the above. It’s a classic psychological explanation versus a sociological explanation and both can be valid. There are things you internalize from society about what a parent should be and look like and do, and how a child should respond. Then there’s the actual transaction that happens on the ground. It’s not either/or—one informs the other.
BLOOM: I think we can do a whole story on that! When will you have results from the clinical study?
Lucy Lach: We have two doctoral dissertations. One tests the role that adequacy of social support for the child and family plays in a child’s quality of life. The other examines the role that parenting attributions and behaviours play in families’ experiencing their child’s disability as having a positive or negative impact. We found in the first that when a parent feels like their child’s and family’s support needs are more adequately met, their child’s life quality is higher, even in the face of high levels of neurological complexity. Next on my agenda is to examine the role that ‘overprotective’ parenting plays in child outcomes.
BLOOM: You have teenage twins with significant learning disabilities. Did your earlier work in the field of disability help you navigate some of the issues your own children faced?
Lucy Lach: Well, it was certainly hard to be on the receiving end of schools that were being judgmental and difficult with my kids and particularly with my son. Sometimes educators had already made assumptions about my son—they’d diagnosed him before anyone had actually administered a test. But absolutely, my research informs my parenting and my parenting informs my research.
BLOOM: What have you learned from raising your kids with learning disabilities?
Lucy Lach: That they’re not like me—they have other strengths that I don’t have. They are both socially gifted and can talk to anyone. As a child I loved to read and learn and study and my children are not like that. They are happiest when they are interacting socially. I get that, but as a mother it has been a bit of a struggle to not apply my standard to them.
BLOOM: I feel that we still devalue people who think differently—particularly in academic settings. Scientist Barbara Gibson here talks about the moral hierarchies of movement, and how we influence children’s development because walking is seen as the only acceptable way to get around. But I think we have moral hierarchies about intelligence. We make it so obvious that we value academic intelligence, yet we have many clients who have learning and intellectual disabilities. How do we convey the value of different ways of thinking? Could there even be advantages to different ways of thinking?
Lucy Lach: We definitely need to valorize different ways of knowing. There’s an emerging literature on different types of intelligence that is slowly making its way into the mainstream.
BLOOM: Have your thoughts on intelligence changed over the years?
Lucy Lach: Absolutely! I had no choice because my default position is to recognize strengths and abilities as opposed to inabilities. That’s how I operate. When I describe my kids as socially sophisticated I mean they have amazing social skills and intelligence and if they can capitalize on that in some way, in a pro-social way, then they’re going to be okay. Yet my kids have had no exposure to help them recognize the importance of their social intelligence. In fact, if anything, at times it has been devalued and mistrusted. What about work in the trades? What about sales? What about services? They’ve had no exposure to that. It’s really frustrating because choice matters.
BLOOM: I find it interesting that there are a number of studies about self-reported quality of life in people with Down syndrome, and typically the participants rate their lives very highly. But when you mention this to people who study quality of life, they discount the studies.
Lucy Lach: I find that fascinating. Some of the quality of life research I’ve been involved in subsequent to epilepsy surgery has looked at child and parent ratings of the child’s quality of life and the child inevitably rates their quality of life higher. Quality of life literature is a ‘dog’s breakfast’ quite frankly. So when you say ‘quality of life’ and another person says it, you may both be drawing on completely different assumptions and dimensions.
BLOOM: Knowing that parents of kids with disabilities are at greater risk of mental health problems, is there anything specific you do to take care of yourself or build your resilience?
Lucy Lach: Ha! For years I just ignored it. Now I recognize that between working long hours and my kids and husband and hitting age 56 this year, your health can go a bit sideways. I’m paying more attention to how much I’m walking, what I eat, and whether I go for regular checkups. And I do take vitamin supplements.
BLOOM: If you could change one thing in our health or social supports for families of kids with disabilities, what would it be?
Lucy Lach: We have navigation services spread across different sectors and institutions. Yet families experience feeling lost and uncertain. They don’t know what to access, where to access it, and how. We need to focus our efforts across diagnostic silos to make sure that every parent knows what they and their child are eligible for and to give them the tools to make informed choices.
We also need to be doing more to create opportunities for parents to support parents. There are things parents can say to one another that a professional could never say to them. There’s a street ‘cred’ there. In my next phase of research I’ll be designing peer support groups online—for parents across disabilities, not just within a disability group, who have children at similar developmental stages. I’m currently running focus groups to figure out what they need, how they would like it delivered, and by whom. No sense in doing anything without first hearing from parents.
By Louise Kinross
Emily Chan, 19, has come full circle.
This summer she’s a researcher in the Ward Family Summer Student Program at Holland Bloorview.
As a University of Toronto student who just finished her second year in mental health studies and health policy, Emily hopes to become a clinical psychologist working with children with disabilities.
To her studies she brings a lifetime of firsthand experience. Emily, who has a rare neuromuscular condition, spent the first six years of her life living on the complex continuing care unit at Holland Bloorview. She’s attended our reverse-integration kindergarten, volunteered to bring a patient voice to research projects here, participated in life skills programs and is currently co-chair of our youth advisory.
“I’ve had many people come up recently and say ‘What are you doing here?’” Emily says. “When I say ‘I’m working as a researcher’ and show them my orange badge, especially those who knew me as an inpatient, they’re shocked.” BLOOM caught up with Emily since we last interviewed her.
BLOOM: What did it feel like to walk through the doors of Holland Bloorview as a research student after your life-long connection as a client?
Emily Chan: I’ve come here for so long and seen so many staff working here, and to be able to now be one of them, feels very surreal. I have so much respect for everyone that works here and now I’ve joined that community of workers. It’s an honour for sure. I love the work that we do here and it’s nice to be part of something you can relate to in a very personal way.
BLOOM: Why did you want to be a student here?
Emily Chan: First of all I have a sense of familiarity. I’m very familiar with the people here, the researchers as well because I’ve participated in research. I know a lot of the clients here. It came naturally to gravitate here. Somewhere else I would feel more out of place. Being able to contribute to the whole of what we do is unique because I used to be part of it and now I’m helping to contribute in a different way.
BLOOM: What do you hope to learn?
Emily Chan: I hope to be able to apply knowledge I’ve learned at school to a real-life setting. I also want to learn how more about how the hospital conducts research and the internal workings of research: the ethics of it, how to write up a research proposal, how to conduct a study—skills that I’ll be able to carry with me through the rest of my academic career. I know the work we do here is so special and I’m interested to see the impact it has on children and families.
BLOOM: I know a lot of the buildings on the downtown campus of U of T aren’t accessible. What’s it been like to be a student who uses a wheelchair?
Emily Chan: I’m on the Scarborough campus, which is great. It’s very small and nice in the sense that I have a real sense of community with my peers and I see people I know and cross paths with them often. The Scarborough campus is also only a 10-minute drive from my house so it frees up a lot of my time to do extracurricular clubs.
All of the buildings are modern and relatively new and there are lots of elevators and ramps already in place. Many of the buildings are interconnected so in the winter I don’t have to go outside in the freezing cold with snow on the ground and pray my wheelchair doesn’t break down. The structure of the campus is very accessible. The elevators do break down but there’s nothing I can do about that.
BLOOM: When we last spoke you talked about how you’d been teased because of your disability in Grade 2. And that at high school, some teens taunted you. How are you treated as a person with a disability at U o T?
Emily Chan: It’s shocking to me but I feel very much like any other student there. I used to always be stared at and feel out of place and obviously different from my peers. But at university—I don’t know if people have matured or it’s just the nature of the community—but I don’t get stared at very often. I don’t feel significantly different from my peers. They’re always willing to lend me a hand if I need something to be moved out of the way or if my table needs to be adjusted. They’re very accommodating and understanding. I haven’t had a bad experience there which is very interesting. I’m quite surprised.
BLOOM: What research project are you working on here?
Emily Chan: I’m working on a project with Sally Lindsay that looks at the benefits of volunteering for youth with and without disabilities. I’ve interviewed a bunch of participants and asked about their experiences: What they’ve gotten out of it, the benefits and challenges. It’s an interesting project because I myself have volunteered here for the last four years. When I’m doing my analysis it makes it easier for me to understand what people are saying because I’ve been through the experience.
BLOOM: What volunteer work have you done here?
Emily Chan: I’ve been a youth mentor and sat on a couple of research projects to give the perspective of youth who’ve had clinical experience here. I’m now the co-chair of the youth advisory council.
BLOOM: What part of the research on volunteering are you working on?
Emily Chan: I’m in the middle of analyzing the interviews for major themes. I’m working towards a poster presentation at the end of the program.
BLOOM: Has anything about the research surprised you?
Emily Chan: I think one thing that youth with disabilities struggle with a lot is finding their place in the volunteering world. As a person with a disability you can think 'how am I supposed to be able to contribute to society when the idea that people have is that I’m the recipient of volunteer services?' We have to turn the tables around. Youth with disabilities have something to offer and we don’t always need help. It’s a newer concept for people to grasp.
BLOOM: Do you think youth feel hesitant to apply for volunteer work because of stereotypes about disability, or do you think when they do apply, they may face negative attitudes?
Emily Chan: I think it’s a bit of both. They might feel scared to reach out and say ‘Hey I’m a person with a disability but I’m very interested in volunteering. Would you have anything for me to do?’ They might be afraid people will say no. It’s also an attitude thing that people perceive us as not being able to help but needing help. The word ‘help’ is a bothersome word that creates a hierarchy between the ‘helper’ and ‘helpee.’ The helper supposedly has something the helpee doesn’t have, that they’re lacking. That creates an unequal relationship between two people.
BLOOM: What does your personal experience with disability and Holland Bloorview bring to your research work?
Emily Chan: I lived here for the first six years of my life so I’ve received a lot of care and help from different people on that end. After I was discharged and came home and was growing up I felt an obligation to give back, so I came back and volunteered. I’ve also participated in Youth at Work and other life skills programs. Youth at Work was major in helping me develop skills. They gave me that hands-on experience to go out in the community and be able to find and work a real job for two weeks. So I’ve had a lot of experience that I can apply to the research I’m doing now.
BLOOM: What’s been the biggest challenge of being a research student?
Emily Chan: Getting people to not see me as a client and more as part of the staff. It’s a little bit of a role shift for me and them. I need them to treat me more or less as an equal and not so much as a client who requires services here. And I have to make people see I’ve grown up and developed my own mind and I know what I’m doing and don’t need someone’s assistance—not that assistance is a bad thing. I need to break that image of me being a client as opposed to a researcher here. It seems that seeing a former inpatient who was discharged and came back into Holland Bloorview in a different role is not something they see often.
BLOOM: Would you like to see anything change in clinical care or research about children or adults with disabilities?
Emily Chan: I think incorporating more of a client perspective here. Clients who have been discharged or are within the system have a lot to say about the workings of Holland Bloorview. Who else knows it better than people who have been through it themselves? About six months ago I approached the new CEO, Julia Hanigsberg, and said ‘I used to be a former client here and I have some things I want to discuss with you about it.’ She was willing and we had a nice conversation about my observations. I think it’s being able to embrace different lenses on how you approach an issue. We’re taking steps in the right direction but I think we could have more youth on different research projects to give their perspectives.
BLOOM: It would be wonderful to also adapt our research so that people who don’t speak conventionally can have a voice.
Emily Chan: Just yesterday I went to a talk where a researcher spoke about a project where she had people draw their interpretations of what it’s like to have a concussion. We rely so much on verbal communication that we can forget about other forms. Having a drawing can be so rich in and of itself. Sometimes words can’t capture the whole image of what you’re going through in terms of your feelings.
BLOOM: What advice would you give staff working with children with a variety of disabilities?
Emily Chan: Respect them. Respect is a very major one. We need to break down that barrier between helper and helpee and make it more of a collaborative effort. So instead of saying ‘How can I help you?’ ask more questions: ‘How can we work together to further advance your quality of life?’ We need to bring the client and family in as an integral part of care and knock down that barrier between clinician and client. Even though the clinician might be an expert in their field, the child is the expert in their own lived experiences. It’s important not to make assumptions.
BLOOM: What about advice for parents?
Emily Chan: A lot of disabilities can come with the whole mental burden of not being able to do the same things as your peers. Not being able to walk like your peers or not being able to communicate on the same level. It can be very mentally frustrating. I have some friends who struggle with feeling that no one in this world understands what they’re going through, because they have such a unique set of lived experiences. As children here grow older they can realize that they’re different from their peers and it can be a very isolating feeling. We need to start conversations by asking if someone is mentally okay, not just if they’re physically okay, and if there’s anything we can do to support mental health. We need to be very open and not treat issues like depression or anxiety as a taboo topic.
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