Welcome to “Voices from the Disability Community: – the series that introduces interesting people with various disabilities by asking the same set of questions to everyone. The point of doing that is share the diversity within the disability spectrum and experience, and get to know some cool people.
So, without further ado, please meet Sarah Levis!
Getting to Know You
- Your name: Sarah Levis
- What’s your connection with disability? Physically disabled; long-time volunteer and former employee in Ontario’s developmental services and special education sectors; disability advocate and award-winning disability blogger.
- Star Trek or Star Wars? Star Wars, ultimately, but it’d be difficult to live in a world without both!
- If you could live in any other country for 2 years, where would you go? Ecuador
- What dish would you bring to our community picnic potluck? Fancy cheese and crackers.
Now That We’ve Been Introduced…
- What do you do: I’m a disability advocate with over 20 years experience (volunteer and paid) in Ontario’s developmental services sector (support for intellectually disabled people.) I am also a small business owner, writer and hired nerd (website development, social media management.)
2. How did you come to doing what you do? How has your career trajectory flowed?
I decided when I was 15 that I wanted to be a social worker. My mother told me that I needed to get some volunteer experience in that field, so I answered the call for youth representatives on the steering committee that was investigating the feasibility of amalgamating the children’s services in my county, and sat on the amalgamated board for a year.
I also joined Community Living’s “Circle of Friends” program, and was matched to be a friend to an intellectually disabled women; we are still friends. I discovered that I liked volunteering with Community Living, which is a support agency for intellectually disabled individuals. I did a cooperative education placement with them and sat on their board. When I went away to Queen’s University, I volunteered with a similar agency.
In 1999 I had a small stroke because of an arteriovenous malformation. The stroke didn’t do permanent damage, but my life was on hold while I waited for a surgery date to treat the AVM. I lived at home and volunteered at Community Living. I started to think, “I like this work. I’m good at it. I could do this as a job.”
I applied for the Developmental Services Worker program at Loyalist for the fall; in Ontario, service agencies like Community Living prefer that applicants have the DSW. However, after a craniotomy in May to treat the AVM, I had a much larger stroke that wiped out my left side, and I spent the next 6 months doing in-patient stroke rehabilitation. I wouldn’t go to school until 2002, and it took me two years to graduate from a one-year program.
But I was glad that I got a chance to go to school as a disabled person, learning about how to support disabled people. I thought about the material in ways that I don’t think I would have otherwise, and I see now that ideas like ableism and privilege were bothering me even then, even though I didn’t have the language to talk about them.
The school and I disagreed on a number of philosophical points, sometimes very strongly. At 25 years old, I was among the older students in the class, and I’d had been volunteering with Community Living for ten years – I was fiercely protective of it and the way it did things, and dug in my heels at perceived slights towards agency supports in general.
For much of it, I now see what the teachers were trying to say, and know that I would not now disagree nearly so much when they talked about how, for example, natural supports are preferable to agency supports (although I think that this is a simplistic expression of an idea that can be quite complex in practice.)
I was told by many people that I wouldn’t get a job in my field, granted that I walk with a cane, have almost no function in my left hand, and don’t drive because of a seizure disorder.
But 2004 started a period where I worked several jobs in developmental services, education, and mental health. However, by 2011 the work dried up for me, and I was jobless for over a year. Social services work was changing – the people that agencies were hiring needed to do everything, including highly physical support work and driving. I couldn’t do the lifting and fast service involved with retail. As the long period of unemployment stretched on, I started a blog to kill time and to say some things that I needed to say about disability. I taught myself social media to promote “Girl With The Cane” and people eventually started to read.
When I finally did get another job with a website start-up doing customer service and administrative work, I kept blogging. I had also started my own small business, where I did writing and social media management.
I’d always liked to write. I’d written a small book of essays (now out of print) about having the stroke, and local people had seemed to like it, but I’d never considered that people might like what I had to say about disability on a large scale.
I’ve never made much money with the writing, but I don’t really care – I’ve met so many interesting people through the blog, and learned so much that training and school had never mentioned, that writing the posts is totally a labour of love.
3. Where would you like to see yourself in 5 years? I’d love to be supporting myself with my writing and advocacy work, but I know it’s very difficult to do.
4. Not to be morbid, but what do you want people to remember about you when you’ve gone? That I didn’t let my disabilities stop me from doing what I wanted to do, or use them as an excuse to not to what I needed to do.
5. Who or what inspires you? At the risk of sounding inspiration-pornish, the people that I’ve supported inspire me.
Some of them have been young adults making difficult life decisions without support networks that I took for granted at their age. Others, adults, grew up in Ontario’s system of institutions, most likely enduring decades of abuse that they may not even know how to talk about, only to find themselves having to start new lives with new support services in towns where they knew no one once the institutions closed. I find their courage deeply moving.
1. If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say? I really struggled with how people reacted to my as a disabled person. For example, when I was doing in-patient stroke therapy in Ottawa, I met people from my town while shopping in a mall, using my wheelchair. I broke off the encounter almost immediately; I was convinced that I could see pity in their eyes, and it infuriated me so much that didn’t use my chair in my town once I returned home.
I’d tell that girl now that she gave up an awful lot of her power that day because of something she fancied she saw in someone’s eyes. I’d talk to her about internalized ableism, because she wouldn’t have known about that. I’d tell her that she can’t control how her disability makes people act around her, but she can control her reactions, and whether her response to other people’s dehumanizing treatment (intentional or unintentional) is to let it make her small and meek or full and assertive of her right to be treated with the dignity that she deserves.
2. What do you like about your particular disability? I have been a writer from an early age and I love to read. I’m sure I would have found a way to do both if my stroke had affected my ability to do those things. However, a few days after my craniotomy, I tried to read a book, and I couldn’t make the words make sense, and I *panicked*. I am grateful that the damage from my stroke is 98% physical, that I have no accompanying pain (post-stroke pain can be terrible), and that I can read and write the way I always did. I’d manage if I didn’t, but I’m glad that I don’t have to.
3. Any one thing that you wish people would *get* about disability? People tend to dehumanize disabled people in a variety of ways. They assume that it’s okay to force help on us, to touch us without permission, to ask intrusive questions without a second thought, to assume that we don’t need access to sexual safety options and reproductive rights because we are non-sexual…I don’t see why it’s so hard for non-disabled people to see that disabled people are, first, people, and that if you wouldn’t treat a non-disabled person in a certain way, then you shouldn’t be treating a disabled person that way either.
4. What single piece of technology makes your life easier? Electric toothbrush. My stroke affected my dominant hand. I can do everything now with my non-dominant hand that I used to do with my dominant hand, but my non-dominant hand will always be a little weaker. My teeth are better cared-for when I use an electric toothbrush, as opposed to the manual brushes that I used pre-stroke.
Where else can we find you online?
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.