As a learning designer and trainer, I have done a lot of consulting work in accessibility and disability in the last few years. It has been a steep learning curve as I develop language, knowledge, and skills in disability and accessibility justice. Like any topic that focuses on rights and equity, it’s important to talk about and share my own social identities, to locate myself in terms of my power and privilege. This is my disability autobiography. I have only recently begun to view myself as someone with an invisible disability. I didn’t think the word applied to me. When I started working in accessibility a few short years ago, I considered myself an ally, as well as a parent of a child with learning differences.
A few years into this work, and my perspective has changed. I understand more about the definition of disability, accessibility, and barriers. I have also experienced some new diagnoses in the last few years that create barriers in my life. It’s not easy to accept these limitations. I also still feel strange equating my barriers with disability. I don’t have physical barriers, and I can do most things I desire in my life. I mostly embrace this newish identity of myself. But it’s taken a while to get there, given the stigma around disability and mental health issues.
I’ve interacted with disability my whole life. I have a biological parent with a physical disability, am a parent myself of a kid with learning challenges, and I experience multiple invisible disabilities that affect my energy, focus, and pain levels. I also worked at L’Arche in my twenties, which gave me a unique and personal connection living with adults with intellectual disabilities.
My biological dad was paraplegic. He and my mum separated when I was very young, just before he was in an accident that left him quadriplegic. He didn’t have use of his legs, and limited use of his arms and hands. He used a power wheelchair and assistive technology. He moved to Toronto, given that Nova Scotia’s programs and services at the time meant he would be very limited in terms of housing, transportation, and employment options. We exchanged letters throughout my childhood, but I didn’t meet him in person until I was 16. It was strange as a teenager to meet him and share intimate space with a man I had never known. He used a power wheelchair and had an accessible apartment in Toronto. It was my first exposure to accessible technology, and a shower made for wheelchairs. He died in 2019, from health complications due to his disability. I had been estranged from him for many years, so it was not a shock.
In my early twenties, and I took a year off university, to live and work near Cornwall, Ontario, at a small, rural L’Arche Community. In L’Arche, people who have intellectual disabilities and those who come to assist share life together in homes that are integrated into local neighbourhoods. “Across Canada and around the world, L’Arche creates communities of friendship and belonging. In L’Arche, people with and without intellectual disabilities live, work, learn, and grow together. L’Arche demonstrates that when persons with intellectual disabilities take their place at the table, they contribute to a more just, compassionate, and vibrant world for all” (L’Arche Halifax website). I became very close to some of the people I worked and lived with at L’Arche. Gaetan was a man in his early 30’s with Down Syndrome, who loved Elvis, ties, and eating. He and a few of us from L’Arche would go to a weekly music event and dance for a few hours to local fiddlers. Sheila was blind, deaf, and non-verbal. She loved her stuffed animals and making things with her hands. Cecilia was the queen bee of the house. In her seventies, she loved to sing and dance, and to tell stories from her life. It was a joy to cook, bake, walk, learn, and live with this group of people. The focus was relationships, community celebrations and creating inclusive experiences that fostered connection. I only spent six months at L’Arche, but it had a big impact on my values of inclusion and equity for all.
One of my kids has learning disabilities. She has challenges with working memory, so for example, cannot memorize dates or the multiplication table. She masked very well at school and at home. Teachers started to report that their behaviour was causing issues at school. They had formal adaptations, based on a psycho-ed assessment, but it didn’t seem like the adaptations were happening. We presented to their teachers, sharing their experience as a student, as well as information on executive function, working memory, and her lack of impulse control. Many of the teachers thanked us, and things seemed to go a bit better after that. They had more time for tests, and a quiet space to do work, as well as more support overall. I realized that I had to step into an advocacy role for them. But more importantly, as a parent, I need to ensure my kid can advocate for themself, especially as they ages. We’re still working out what that looks and feels like for both of us, as they shift into adulthood.
In addition to being an ally and advocate, I also experience invisible disabilities, including depression and anxiety, as well as intermittent pain with endometriosis (diagnosed in my 30’s), and irritable bowel syndrome (diagnosed in my 40’s). These chronic conditions can flare at any time. I might feel fine for a few weeks, and then experience a few days of intense symptoms that keep me in bed. I have to be careful with what I eat, my levels of stress, my sleep, and exercise to ensure that these conditions don’t flare as often.
I’m now in my late forties. In 2022, I developed severe anxiety and didn’t sleep for more than 4 days. I was in another country for work, and it was a terrifying experience to not have my usual supports. I had never experienced a panic attack before, but now I was in the middle of one that seemed endless. One night I took a sleeping pill for insomnia and fell, waking up on the bottom stair. My neck and head were throbbing, but I didn’t think it impacted me, because the anxiety was still so overwhelming, I spent weeks just breathing the next breath.
As soon as the anxiety started to ebb due to pharmaceutical supports, the concussion symptoms flared with a vengeance. I walked around my house with ear plugs and sunglasses, sensitive to every noise and bit of light. I couldn’t work, couldn’t stay vertical for very long, couldn’t listen to music or podcasts, and definitely could not be in front of a screen. I spent three months mostly being horizontal, with short walks every day, starting with just a few minutes and working my way up. I was terrified that my career was finished, and my clients wouldn’t want to hire me again. I had to cancel all my contracts and couldn’t return to part-time work for more than three months. My narrative to the world was that I had a concussion. I wasn’t ready to share my issues with anxiety and depression that caused the insomnia and subsequent concussion. Only recently I feel comfortable sharing that my experiences with anxiety and depression are ongoing and part of who I am. I need to be very careful to balance sleep, exercise, and screen time, to not trigger anxiety.
Flexibility with online work has been a huge support as a result of the shifting work expectations of Covid. There are days when I work from bed, and times when I do an online workshop and then have to rest. Indeed, rest, recovery, and wellness now have to be my priorities over productivity and results. I still have high expectations for myself and produce great work, but I don’t let it come before my mental and physical health anymore. It’s a big shift for someone who is a serial entrepreneur and very driven to make positive change in the world. Who often placed my work for others before my own well-being.
My experiences with my biological dad and my kid, as well as my own invisible and intermittent disabilities, give me a small lens into disability and accessibility. Flexibility at work is my greatest ally, and having it means I don’t experience many barriers, and can thrive despite some of my limitations. I know that many people do not experience my level of flexibility and lack of barriers. I’m on a lifelong journey to deepen my understanding and empathy, and deeply value people with intersectional identities who have shared their first voice perspectives of disability.
Image Description: Corrie, Sea Change CoLab owner, working on the couch wrapped in a blanket, holding a yellow mug and laptop with colourful stickers on the back.
Image Description: Corrie is kicking a boxing bag in a 30-Minute Hit class. She is also wearing a crown and red gloves.