A Story of Employment, Disability, and Entrepreneurship
By: Erica Carson-Sami
My career to this point has been a roller coaster of ups, downs, and wild loops that often took me by surprise. In no way has it been what I expected, but then who really knows what their career will look like when they choose that path at 18 years old? What if the majority of us aren’t actually supposed to end up in the field we studied? What I do know is that listening to your body when you’re overworked as well as saying yes to opportunities that make you happy and fill you with purpose is the right way to go. With that said, let me share a bit of my own story with you…
I am a woman with cerebral palsy and I have always worked really hard to prove I could accomplish great things and have a positive impact on the world. Of course, I was constantly fighting negative stereotypes of people with disabilities and wanting to prove that we all have the potential to contribute meaningfully in society. As a young adult, I volunteered in different capacities, held a part-time retail job, as well as various full-time summer positions. I was successful during my undergraduate degree and received a large scholarship to do my master’s degree - everything seemed like it was “on track”.
As I went through my master’s of social work, I decided I wanted to work in community development with people with disabilities. It seemed like a great way to help people with disabilities like myself empower themselves by forging a strong sense of community around them. I was months away from graduating when I had a terrible fall and sustained a concussion. Despite awful symptoms such as persistent migraines, nausea, dizziness, and sensitivity to light and noise (among others), I was able to finish my degree with the generous support of professors, coworkers at my placement, classmates/friends, and family.
Before I go further, I want to pause here to issue a bit of a disclaimer. This post is not meant to elicit pity, nor is it meant to highlight what I have or have not overcome. Rather, my intent is to shine a light on the rigidities of the workforce in Canada that makes it difficult for people with disabilities or health conditions to thrive. I also want to validate the struggles that people with disabilities are having in obtaining or retaining employment - it is not a reflection on them, but on a broken and ableist workforce. I also want to highlight the importance of self-awareness, and learning what you need to succeed. Okay, back to my story…
Although I had my degree in hand and was very excited to start my career, my brain had a different plan. It was clear that the concussion had caused more damage than I initially realized and that I needed more rest. Eight months after the fall, I started a mentorship program which was only 12-14 hours per week, where I could test my capacity to work, and figure out which new accommodations I might need to adapt to my new circumstances. After 4 hours of work, I would return home, feeling terrible and unable to do anything but lay in bed and rest. Two weeks into the program, my doctor suggested I leave and continue to rest for a few more months. A year after the concussion, I started working part-time for an organization with the support of an employment liaison, with the understanding that my work needed to be non-urgent and project-based so I could take a break the next day if my symptoms flared up.
Eventually, I was diagnosed with post-concussive syndrome, which meant that many of my symptoms were likely permanent - so I needed to find new ways of dealing with them, and more importantly, to learn how to listen to my body. As I continued taking on new roles and exciting challenges with other organizations, I got to a place where I could work 30 hours per week with relative comfort. I learned what activities would aggravate my symptoms, and the different tools I could use to avoid symptoms altogether. In the past, I had been entirely capable of doing full-time hours, but I realised that 30 hours per week was my “new normal”. It was hard to find positions that would allow me to grow and develop a career path that were not full-time. This often meant applying for project-based roles with a designated end date, with little opportunity to join the larger organization after the project ended.
If you are a person with a disability struggling to nail down a permanent position that offers you financial stability while many of your non-disabled friends seem to be thriving – you are not alone. Experiences such as this are not uncommon. The workplace as we know it now, is still very much designed to support people without disabilities or health conditions. It is set up so people with the best immune systems, or the healthiest bodies and mind, or the fewest family obligations can succeed. Though there have been some important strides in terms of accessibility in the workplace, it is still not designed in a way that allows for very capable people with disabilities to thrive, be promoted, and have long stable careers.
A few years ago, I thought I had finally “made it” – I had a permanent position within a very large-scale organization. I was determined to rise up the ranks, but like many organizations these days, there was an unspoken expectation of fast-paced work with quick turn-arounds and working overtime was common. None of which suited my circumstances. Luckily, I had an extremely compassionate and understanding manager and great teammates. But, in my desire to succeed, I continued to push myself too hard… which landed me on long-term disability leave.
During my leave, as my condition slowly improved, I started to think about entrepreneurship as a way to allow me to make my own schedule and work at my own pace. I could still continue to do important work, but I could refuse things that didn’t align with my values or didn’t fit my schedule. Prior to my previous role, my work with non-profit organizations and educational institutions focused on supporting people with disabilities in their employment - something I was (and am) very passionate about. Though it wasn’t in my job description, my colleagues often encouraged me to present and speak on panels about disability and employment, and I had some wonderful experiences. About a year ago now, I started CARCO Disability Strategies, which aims to help people with disabilities develop the important and necessary self-advocacy skills they need to thrive in the workplace as well as receiving one-on-one guidance and support. I also assist employers in creating workplaces that are disability-inclusive and enable individuals to be their authentic selves at work.
For more information about Erica’s services, please check out her bio below, or visit her website at www.carcodisability.ca.
If you are a person with a disability struggling to get your personal care needs met in the workplace, please check out www.whimble.ca.
Header image on main blog page of young man in a manual wheelchair in front of the Aberdeen Pavilion in Ottawa, by Alana Winchester Photography
Erica Carson-Sami is the Founder and Disability Inclusion Strategist at CARCO Disability Strategies. She identifies as a disabled person and proud member of the disability community. Erica has a Master’s of Social Work and Bachelor’s degree in Women’s and Gender Studies.
Recently, Erica was the Course Instructor of a fourth-year undergraduate course entitled Social Work and Disabled People for three fall terms at Carleton University. During that time, she was also a Policy Analyst at Accessibility Standards Canada. Prior to that, Erica was an R&D Officer for the David C. Onley Initiative aimed at improving employment outcomes for disabled students. Erica was a Program Facilitator at Pinecrest-Queensway Employment Services where she ran a program for adults with disabilities who experienced barriers entering the workforce.
Erica has led workshops and participated in panel discussions for organizations such as the International Monetary Fund (IMF), Community Health Centres, and departments within the Government of Canada. These engagements were geared toward helping these organizations understand how they can incorporate more accessible and disability-friendly hiring practices and how to lead and retain talented employees with disabilities. She was also the Chair of the Ottawa Independent Living Resource Centre from 2018 to 2019.
Erica has also done volunteer work to develop content and training materials related to supporting patients with disabilities, as well as coaching students in health-related studies to better understand the realities of people with disabilities.