Good care? It starts with R-E-S-P-E-C-T, student says
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—butI don’t get stared at very often. I don’t feel significantly different from my peers. They’re always willing to lend me a handif 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.
