Blurring the line between who gives and who receives care
By Louise Kinross
Elizabeth Mohler has many identities when it comes to disability. She is blind. She is also a caregiver to brothers with disabilities, a PhD candidate at Western University in London, Ont. studying self-managed attendant care, and a volunteer who teaches in a Family as Faculty role at Holland Bloorview. “Living with a disability myself and being a caregiver—it’s not a space we talk a lot about,” she says. “I’ve always felt like I have this insider and outsider perspective.” We spoke about her personal and academic life.
BLOOM: How did disability impact your family?
Elizabeth Mohler: I live with a visual disability. I have two brothers who are blind and have non-verbal autism and other diagnoses. So growing up I was navigating being a sibling with a disability who also had more severely disabled brothers. We moved from Brockville to Toronto in the 1980s for services we could get at SickKids Hospital and Bloorview.
I was a sibling who went to support groups at Bloorview and the Geneva Centre for Autism, but I also had a disability. The support groups were for able-bodied siblings to come together about their experiences but didn’t really meet my needs. I have a disability that many would consider significant, but in comparison to my brothers, who aren’t able to see and talk and have behavioural issues, my disability was very different.
Until Grade 5, I lived at home with my brothers. Not being able to talk to peers about my situation at home was challenging. They didn’t understand why it was hard for me to have friends over. Sometimes my parents weren’t comfortable having people over because they could be quite loud and noisy, and if you’re not used to that, it can be frightening.
BLOOM: You said you had a great experience going to a boarding school for the blind.
Elizabeth Mohler. Yes, I went to the W. Ross Macdonald School for the Blind in Grade 5 and it gave me an opportunity to engage with peers that were like me. I’d never had that before. I made some really close friends there. Mainstreaming is important, but it can be isolating if you don’t see anyone like yourself. I was also able to meet successful blind adults and see what was possible for me. It was a safe place for me, and I can’t say enough good things about it.
BLOOM: What role do you play in your brothers’ lives now?
Elizabeth Mohler: My disabled brothers live in different community homes in the Barrie area, and I also have an able-bodied brother who lives in Halifax.
My disabled brothers have Passport funding, and I do the admin work for that, submitting invoices and paying workers each month. Passport allows them to go to therapeutic trampoline, swimming, Snoezelen and do gardening.
The Passport forms could be much more accessible. There’s an assumption that an able-bodied person is filling them out. When you are navigating your own access needs, it adds a whole level of complexity to caregiving.
I also participate in Zoom calls to check in each week with my brothers and see how they’re doing. My parents, who moved back to Brockville, also provide support from a distance.
BLOOM: My husband does the admin for our Passport funding, and I find it’s a lot of work. Do you ever find it onerous?
Elizabeth Mohler: I wouldn’t say onerous. A lot of caregiving discourse talks about the burden of caregiving. At times it can feel heavy, but that was more when I was younger. I see care as a really beautiful thing to be able to offer someone. You get better and faster at it, and I’m not involved day to day.
I find the terms caregiver and care recipient set up these binaries: ‘I’m the staff, so this is what’s happening, and you’re the recipient.’ For example, we’re night hawks in my family. We’re not an early to bed clan. We heard that one of my brothers was having trouble sleeping. Then we learned he was made to go to bed at 8 or 9 because they had fewer staff in the evening. So of course he’s not sleeping.
We talk in the literature about care being person-centred, but where people are paid to give care, it ends up being regimented so that everyone eats at this time and sleeps at this time. It’s important for researchers to understand that what the literature says should happen, and what actually happens, aren’t the same.
I like to think about care as something we're all giving and receiving in different ways and at different times.
BLOOM: How did you get into rehab sciences?
Elizabeth Mohler: I would say through my lived experience and because of barriers I’ve faced getting into a health-care role as someone who is disabled.
My dream was to work in a hospital in complex continuing care. When I finished my undergrad, I applied to a social work program. I got into the program and went to the orientation. I said that I wanted to work in a hospital, and the dean said hospitals are really big places and I wouldn’t be able to be a social worker there as someone who is blind. So, I ended up doing a research master’s instead.
I also had trouble finding a volunteer position in health care. I was passionate about working with families and I applied to volunteer at a hospital. I had an amazing interview, and then I got a call saying we don’t know how we would accommodate you on the unit. ‘What if you bump into a patient or stumble over something?’ I explained that before I started volunteering, someone from the CNIB would come and orient me, to learn the lay of the land and where everything was.
The long and short of it was that they eventually made it work, but it didn’t feel like a genuine experience because they paired me with another volunteer, and that person engaged with the patients. So it wasn’t me that was making a difference.
BLOOM: Why did you want to study self-managed attendant home care in Ontario?
Elizabeth Mohler: I have friends with disabilities and have seen the struggles they’ve gone through to access care.
It takes a certain type of person to manage it all—whether it’s finding people, hiring them, placing ads, or doing the bookkeeping, which is a big piece.
The other piece is the precarity of it. We know care work is in crisis. It’s the precarity of not knowing if someone is going to come for their shift, or not knowing how long you’ll have someone. From the worker side, it’s getting a shift but maybe it’s only an hour, so how do you sustain that? We know a lot of invisible work falls on family and friends.
I wanted to take a critical look at this model. For example, I developed an analytic guide that I take the intake form through. It asks questions like ‘What is being problematized?’ or ‘Whose voice is centred?’ I’m developing a huge excel spreadsheet with the answers and building threads.
BLOOM: What have you gotten out of your role as Family as Faculty here?
Elizabeth Mohler: It’s brought my love of public speaking and using a lived experience perspective to the fore. It’s also given me an opportunity to engage with others in similar situations. I did my training online in 2024. Since then I’ve done several activities, whether it’s presenting to a lab about living with a disability, going to Ward Research Day and evaluating projects, or helping to teach the Social Work and Disability Practice course at the University of Toronto.
Finding volunteer positions in health care was hard for me and this role is great for my skill set. It’s so verbal and all about communicating and sharing your story. It’s a great fit and I love the people I’ve met, like Jean Hammond and Julia Kowal. It’s a very accessible way to volunteer and make a difference in health care.
That said, there’s still room for improvement. For some of our events, the registration form didn’t ask whether you require an accommodation to participate.
BLOOM: What would you like to do after your PhD?
Elizabeth Mohler: I’d love to support families and youth with disabilities around navigating life with a disability, services, and transitions—similar to what the LifeSpan program at Holland Bloorview does, or the work of your family support specialists. My lived and academic experience would serve me well in a role like that.
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