BLOOM: Tell us a bit about Asha.
Ron Buliung: There’s a difference between how she, and we, view how she’s affected, and the clinical description that emphasizes what she can’t do. Asha’s unable to walk and never crawled, but she can sit independently. She drives herself around in a 300 lb., $26,000 electric wheelchair.
BLOOM: Oh my goodness. Have you heard about the researcher in the U.S. who adapts ride-on toys so that kids with disabilities can get moving at an earlier age? He has issues with the cost and lack of innovation in the industry.
Ron Buliung: No, I haven’t. But I agree that there’s no innovation. Why does Asha’s wheelchair have to be 300 pounds when a formula 1 race car body can be made from carbon fibre? And a lot of the technology design is medicalized. For example, Asha needs a hospital bed. But there’s no reason it has to look like a hospital bed. Many things that we need are drab and bland and dehumanized from a design perspective.
Asha’s needs are like many kids with her type of SMA—they centre around her respiratory health and mobility. She uses a BiPAP every night as a respiratory therapy to help her deal with mild apnea and to help with lung development. She has a hard time expelling secretions and had a lot of pneumonias when she was younger. In terms of the interventions she requires and the teams involved, it can mean a lot of effort and stress and sleep deprivation for us.
BLOOM: What’s she like as a kid?
Ron Buliung: She’s very, very smart. I’m kind of a bit of an introvert and she’s an extrovert. Just the other day we took our dog to the vet and Asha struck up a conversation with a stranger about cats that I wouldn’t have [initiated]. She’s always reaching out with her social skills.
BLOOM: What does she like?
Ron Buliung: She belongs to Young Voices Toronto which is a choir. She loves singing, music, art. She takes an art class on the weekend where she’s doing all kinds of painting and mixed media.
BLOOM: Does she have fine-motor issues?
Ron Buliung: SMA is degenerative, so people gradually lose some of their abilities. But right now she’s writing letters and doing what she needs to do. She’s in senior kindergarten in an elementary school that can accommodate children with physical disabilities.
What’s annoying is that her school is three-and-a-half kilometres away and we live 500 metres from the public school her sister goes to, which is totally inaccessible. It would be nice if they could be at the same school. She likes school and does well at it.
BLOOM: Is her school accessible?
Ron Buliung: They’re working toward creating more accessible spaces. Asha talks about being excluded by environmental barriers. Recently, she said there’s a concrete curb that separates part of the playground from the rest of the tarmac and she can’t get over it in her wheelchair. She knows that going on the [play] equipment won’t work for her, but she wants to be closer to the other kids. She gets pleasure out of watching kids do things. She was sad about that curb. We have to go and see what’s happening and we haven’t had time to do that yet.
She has a full-time educational assistant that she adores. But the process of getting that one-on-one is challenging. To justify the full-time EA we were told you almost need to demonstrate the need for two, in order to get one. We all know the school system is stretched extremely thin. When she first went to junior kindergarten she had a part-time EA and a bit of nursing support. But that also ended. Another weird thing was trying to figure out who can perform labour inside and outside the school. There were a lot of weird rules that can come down to the politics of labour getting in the way of the care of children.
BLOOM: What’s been the most challenging part of raising Asha?
Ron Buliung: The biggest challenge is having the help in place so we can function. For example, Asha needs to be turned over during the night, and she needs her BiPAP monitored. We have a constellation of services to help us so that we can sleep. But it takes an enormous amount of work to make that constellation function. And because there are many individuals operating within it, people drop the ball and we’re left picking up the pieces and rebuilding parts of the system. When a nurse doesn’t show up, or there isn’t a good relationship between Asha and that person, it can be very challenging.
BLOOM: You said you and your wife both work. How do you function if a night nurse cancels?
Ron Buliung: There’s a reason why they use sleep deprivation as a form of torture. Sleep is a common theme in our conversations. Even last night Asha woke up and was very upset at 4 a.m. and I went and helped the nurse with repositioning her. Within the last few weeks, two of our key nurses were allowed to go on holiday at the same time. It blows my mind, when someone’s entire job is scheduling, how we end up doing the worrying and sorting that out behind the scenes.
BLOOM: There have been a number of stories on Global about parents’ inability to get reliable night nursing for their kids.
Ron Buliung: The work of childhood disability represents a part-time job within the household. There isn’t a day that goes by when I’m not having an e-mail conversation with our nursing providers.
I’d say the hardest challenge changes over time. When we first got Asha’s diagnosis we were dealing with the shock and quite frankly, the disappointment and sadness, and the losses accumulate for everybody. No matter how you want to conceptualize exceptionalities, there are, because of the environment we live in and the systems we use and participate in, real limits. There are amazing possibilities as well, but there are also things that are very, very hard to do.
When we first got the diagnosis, my wife Tara and I would wake up in the morning and for 30 seconds we’d forget. And then we’d remember and start crying. And it wasn’t just crying—it was the worst, gut-wrenching, agonizing bawling. That went on for six months. We were given a relatively negative prognosis that Asha might not make it to kindergarten. She’s already exceeded those expectations. I believe she’s with us today and healthy and happy because we worked our asses off, quite frankly, to make sure that things are in place for her to have a good quality of life and for her health to be good. We’re on top of it, but it always feels like we’re just barely on top of it.
BLOOM: How did you move forward from those early days stuck in grief?
Ron Buliung: Time. And also, eventually you make a decision that you’re going to step up and do this and handle it and figure out what to do. I can remember coming to Holland Bloorview to get a cough-assist machine, and I thought ‘I don’t want a cough-assist machine, I don’t want any of this in my life.’
Then time moves on and you start working on health prevention and intervention, and Asha is developing and becoming a person, and you’re putting your family together and fumbling through, and it happens. You have to decide that you’re going to commit to it. That’s an important piece. You have to consciously say ‘I’m onboard to do this.’ And some people don’t. The rates of marriage failure for families who have a child with a disability are higher. But you can get support for that also.
Over time we’re getting over our grief, but you don’t ever ‘get over it.’ It is always there. We talk about anticipatory grieving and loss, particularly with something degenerative that can become acutely critical very quickly. There’s a chronic stress in your life around that.
BLOOM: What do you do to help cope with that stress?
Ron Buliung: I do a lot of biking. I’m an obsessed cyclist.
BLOOM: Do you bike to work?
Ron Buliung: Yes, I bike to Mississauga which is 30 kilometres. That takes about an hour.
BLOOM: So you’re biking two hours a day?
Ron Buliung: Yes, I do a couple of hours every day. But it’s not enough. You have to work on your mental health. Of course they’re not disconnected. You see in the medical literature that people who engage in regular physical activity are less likely to develop depression and anxiety.
BLOOM: Is there anything you’d recommend for parent mental health?
Ron Buliung: I think there’s a stigma attached to reaching out around mental health issues. I think parents should take everything they can get, whether it’s a social worker at Holland Bloorview or using their employee assistance program at work, if they’re lucky enough to have one.
In terms of challenges, accessibility is a massive challenge. From the moment of Asha’s diagnosis, we walked out of the hospital and looked around and everything looked different to me. I saw barriers everywhere. Later, just getting Asha to school involved a massive amount of work and stress to transform the front of our property so she could get from the house in her wheelchair to the school bus. The city did not make it easy. There was no box to tick to say that you needed to transform your front yard into a parking pad because there’s a child with a disability. It took two years!
In one of our initial meetings with our local councilor, she asked ‘Couldn’t you just carry her?’ My answer was: ‘She’s not a bag of groceries.’ And that totally ignored the fact that she’s going to grow and maybe she’d like to have some independence.
BLOOM: If you could change one thing in the health-care system, what would it be?
Ron Buliung: Not being able to move things forward fast enough is a chronic frustration with our family and others. Right now there’s a clinical trial for a drug therapy that’s been shown to, in some cases, get children with SMA type 1 walking. But it’s incredibly expensive—$750,000 for the first year. Health Canada is reviewing the drug in an expedited review process, but I believe they’re only looking at it for children with type 1 at the moment. Where does that leave us?
While we’re waiting for a cure, having more support available.
BLOOM: Like with night nursing?
Ron Buliung: Yes. More reliable, regular support that is carried out with a higher degree of professionalism. When I talk about professionalism, I think a lot of families are conditioned to expect not very much. A few times we ended up keeping people around too long because we were afraid that someone was better than no one at all.
BLOOM: What’s the research you’re doing now related to accessibility?
Ron Buliung: We have 12 to 15 families and we’re doing something called photovoice ethnography of the trip to school. Children and their parents are interviewed separately, but they also take photos from their home to the lot of the child’s school. The photos are used as a cue in semi-structured interviews where parents and kids share the good, the bad and the ugly of access to education.
One of the things we want to do is indicate every institution that is involved in an aspect of the school trip. It could be an agency, the bus operator, the bus driver, the school board, the province of Ontario, the City of Toronto. We want to look at how institutions either enable or produce or reinforce disability. We’re also looking inside the home at things kids and parents see that could make things easier. They have different points of view.
BLOOM: You mentioned in your View to the U interview that before you incorporated disability issues in your research, your work was a protected space, distinct from the challenges at home.
Ron Buliung: I think my initial concern was that it might be a bit overwhelming, but I don’t have that concern anymore. I feel I have this position of privilege and maybe I’m in this position for a reason. I’d like to use it to do work that’s meaningful for me and helpful to others. I teach a course in transportation geography and I’m able to bring something to those courses in a way I hadn’t before.
I’m also plugged in to the regional community of planners and government planning for active and sustainable school transportation. I wrote a series of studies on childhood disability and transport and they had a conversation about how disability can be plugged into what we define as active school transportation. They were thinking about walking and cycling. They weren’t thinking about kids wheeling or other ways of getting there. I can engage policy makers around this stuff, so our kids don’t get excluded from site planning for new schools.
BLOOM: You said that you used to teach a course that included some content on accessibility before Asha was born.
Ron Buliung: I did. But I couldn’t relate to the content in the way I do now. I’ve always been interested in social difference and mobility, but I hadn’t plugged disability into that interest, which was a shortcoming of my own. I was naïve and unable to meaningfully connect with the subject.
Asha is one of my greatest teachers. She reshaped the way I look at the world and that’s a huge privilege.
In my graduate research group, two of my PhD students are working on disability and accessibility. They wouldn’t be doing that without Asha. Asha is the motivation and inspiration for all of this work.