This disability scholar is still learning to set boundaries

By Louise Kinross

I received an e-mail from Rosina Isabella (above with cat Bella) in response to our recent story about a new children's book called We Move Together. She wrote: 'I just discovered the book on your website and I am so glad that it has come into being by so many authors that know how ableism affects disabled people's lives. I am a woman with a physical disability living in the community with cerebral palsy, and I wish that there had been such a book in my time growing up. I am in my late 50s, and there were no resources like this.'

I reached out to Rosina and learned she had been a client as a preschooler here at what was then called the Ontario Crippled Children's Centre. Later, as a 14-year-old, she went to live at the Bloorview Children's Hospital for four years. She is currently in the disability studies program at Ryerson University. We talked about her life and how it can be hard to maintain boundaries when you rely on personal support workers (PSWs).

BLOOM: What was your experience at school at the Ontario Crippled Children's Centre?

Rosina Isabella: It was really medicalized. I had occupational therapy and physical therapy. Physio was not my favourite thing. I had surgeries and wore what I called my Buster Brown boots, which were orthopedic shoes. The highlight for me was I got to ride a special green and gold bike. It had two wheels in the front, two in the back, and one in the middle. It had chest support for me to lean on and I was strapped into the bike like a jockey on a horse. The pedals were at the back. I would do races with the boys. I took it home every summer until they did my second leg surgery, and then I couldn't ride it anymore and I was really upset about it.

BLOOM: Besides your bike, was there anything else you enjoyed about the school?

Rosina Isabella: I liked to read and spell, and I always had my hand up. The teachers would tell me 'Rosie, put your hand down and give another child a chance.' I was always reading on the bus to school and on the way home and the kids would get mad at me and say 'You're not talking to us.' I loved reading.

BLOOM: How did you end up coming to live at the Bloorview site as a 14-year-old?

Rosina Isabella: It was in 1977. My mom was a single parent and with me and two able-bodied siblings, trying to make ends meet was difficult. She couldn't lift me anymore. My brother and sister were expected to help out with me wherever they could, and that's difficult on the other kids. My mom got the spiel about how Bloorview would be the best place for me. In hindsight, it was, but I didn't see it at the time. I was really angry. 

BLOOM: I wonder if at that time it wasn't easy to get home care?

Rosina Isabella: I'm from an Italian background, so there was a lack of information and resources for my mom to tap into. But she was also very private. So having another person or people coming into the home was kind of foreign at the time.

BLOOM: What was your experience like living at Bloorview?

Rosina Isabella: I remember my first meal there. I was carted to the cafeteria with the rest of the kids at around 4:30 p.m. We had meatloaf. And I said 'What is this crap?' At first I was really upset, but then there were a couple of nurses that really got me on my way to independence. They were instrumental in showing me I could do stuff.

We went clothes shopping. We went to church once a week at the nearest church. Fairview Mall was our hangout. The CIBC bank used to come and give us each $3 a week. It was part of our baby bonus, which was split between a clothing allowance and spending money. I used to buy cases of Coke on sale and sell it to kids for 50 cents each. 

BLOOM: How did it affect you as a child not seeing yourself in any of the books or media?

Rosina Isabella: I didn't really think about it at the time. But I was really self-conscious about people looking at me.

BLOOM: You wrote about how you use PSWs now, and while you value their assistance, you feel you have to give up a level of control and privacy that able-bodied people take for granted. What are some examples? 

Rosina Isabella: One is I need help to write a check and open mail. So people see my bills and correspondence, and although they're not supposed to be looking at it, they can certainly take a peek. They see me naked and they see my body, and that level of exposure is much more than they themselves would have in their life by virtue of them being able-bodied. They help me with everything.

It might be someone asking me 'How much did this cost?' or 'Did you have to pay for that?' Recently I had a dental appointment and I told the PSW I was taking a private taxi and she asked how much it would cost. I said $40 and she said 'That's too much money.' I really didn't want her comment, but I guess I walked into that. Or maybe someone will ask 'What time will you be home?' and I'll say 'I don't know, when I get here, I'll call you.'

Once I was looking ahead on my calendar and the PSW asked why it wasn't on the current month and I said 'It's my calendar, leave it.'

I didn't develop boundaries at home and growing up in the Italian community.

BLOOM: Do you ever ask workers not to ask questions or make comments?

Rosina Isabella: I try to say 'I don't want to talk about that,' but then you're seen as moody. You're given a different label: 'Rosie's not in a good mood today.' It's really odd and frustrating, but I created a lot of it. You want people to get along with you, so it's hard to establish boundaries.

BLOOM: What advice would you give children or adults working with home-care workers?

Rosina Isabella: You have to direct the service you want done from early on. You have to be clear about what you want, and do it nicely, respectfully and by all means, say thank you. 

Know what you're expectations are and if you don't want somebody to do something, be clear about why in your head. Say it in a way that's consistent. For example, a lot of the organizations now are doing cross-gender service. That's not something that I want, so I said no from the beginning. 

You have to know how you want someone to move you, and say 'Don't do that with my arm' or 'Put my arm this way' or "This works.' There's a difference between being friendly and being a friend. A lot of the time, lines get blurred because people want to be friends with you.

BLOOM: You don't hire your own PSWs, right?

Rosina Isabella: No, I live in supportive housing and they are hired by an agency that's approved by the government. They come in and I'm responsible for participating in their training and directing my services. But no, I don't get to pick them.

BLOOM: Could the workers be better trained about how it feels to be on the receiving end of care?

Rosina Isabella: I think they could be better trained. Right now the onus is on me. I think it would be good to have an in-service with the client and staff members together to say 'Do you know anything about A, B or C?' because I don't know what's discussed when they're oriented. 

BLOOM: Could the glossary in a book like We Move Together be helpful for workers to understand ableism?

Rosina Isabella: Ableism is a really difficult term for people to understand, especially if English isn't their first language. Perhaps they could do quizzes with staff where they give them a scenario and ask: 'Why do you think this is a good way to do this, or not?' 

BLOOM: What did you do before going back to school?

Rosina Isabella: I was an on-call supervisor for people who called in sick at an independent living place like the one I live in now.

BLOOM: So if a worker couldn't come in, you had to replace them?

Rosina Isabella: Yes. I did that for 22 years.

BLOOM: Why did you decide to go into the disability studies program?

Rosina Isabella: My view of disability was 'me.' I knew about some other disabilities from the people I grew up with, but I wanted to learn a little bit more about accepting other people and to understand different ways of life. I've always believed very strongly in education.

BLOOM: Have your thoughts on disability evolved since you began the course?

Rosina Isabella: I've become more of an advocate. For example, I had a Zoom conversation with the NDP critic responsible for the disability portfolio about pandemic triage protocols that are discriminatory.

BLOOM: What are some of your other interests?

Rosina Isabella: Music and singing. I used to sing in a choir at the Royal Conservatory of Music. I'm a big Rod Stewart fan. I've seen him 16 times and if you come to my house, I have a Rod Stewart shrine here. I've seen Celine Dion. I've been to about 40 concerts. I love watching tennis and go every year to watch the games at York University. I'm waiting for Rod Stewart to come back to town. He had to cancel his tour because of COVID-19.