As one of my final projects for my degree, I was given the task of reflecting on my life up to this point as it relates to disability. While you may have read briefly about some of these stories before – this essay will give you an in-depth timeline to follow as to how I came to be who I am today. I hope you’ll enjoy it! Names and details changed to respect privacy.
As I write this narrative, I am almost a graduate of the Disability Studies program at King’s University College. I am sitting on my couch, in my old and quirky student rental, wearing my pajamas, trying to wrap up these last few weeks of pandemic learning and my undergraduate degree. My last year of university did not pan out in the way I thought it would. I will miss out on all the typical final year graduations, trips and celebrations. While I could spend hours listing all the things I lost because of this pandemic, I have grown more than ever in the last year. I feel more comfortable in myself, my goals and my life, than I ever have before. As I sit here, I know wholeheartedly that the world of disability is where I belong. I do not identify as disabled myself, but I feel so at home in Disability Studies and in the world of caregiving, however, it was not at all a linear journey to get to this place. My connection to disability began long ago at my small community school in a town called Bowmanville.
“Quick, run, you’ll get the Sandy Touch!” I shuffled backwards into the crowd of students at recess. My heart beating and hands shaking. I did not want to play this game, I just wanted to disappear into the mob of bodies.
I went to a small community school where everyone made every sports team and we never, ever won a tournament, we barely even won games. We were a ragtag group of both students and teachers; we all came from such unique walks of life and somehow all ended up at this small, old, community school at the same time. Some came from low-income, single-parent households, some came from shelters, some from their grandparents, others from trailer parks, some from poverty, and some from two-parent middle-class families, like myself. I did not have or make any friends while at this school. I am a very shy person and the lack of friends exacerbated my shyness to the extreme. I did not speak unless spoken to and I walked with the teacher at recess instead of playing with my peers. One year, I was in a split class and was introduced to some kids who were older than me. One girl in the grade above me, Sandy, was visibly disabled. Boys in my class would touch her arm and claim they had the ‘Sandy Touch.’ It was then a game to pass this unwanted ‘Sandy Touch’ to other classmates. Selfishly, I hated this game and not because it was insensitive, but because I hated confrontation. I did not want this ‘Sandy Touch’ because I never wanted to be the center of attention.
I never grew out of my shyness as people told me I would. I continued to be especially shy all throughout my high school years. When I was in grade nine my equally as shy best friend and I were asked to serve coffee at a community supper initiative our church was starting. We cautiously agreed to the task. This was very intimidating for me because I was surrounded by hundreds of people I would typically cross the street to avoid. I was a shy and sheltered young girl serving coffee to people living below the poverty line, people with addictions, mental health diagnoses, people from group homes, and/or people with disabilities. I agreed to this volunteer position out of guilt and at the start I never was excited to spend my Friday nights holding that heavy and hot coffee pot, but after a while, I stopped avoiding these people in the neighbourhood and started looking forward to these Friday evenings. I learned that whether someone lives in a group home or in the mansion down the road they are equally my neighbour. I never had a monumental coming-of-age moment serving coffee but it made the shy girl in me feel more at home in her own neighbourhood.
Throughout my young childhood and into high school I wanted to be a teacher. I thought if I was a teacher, I would be a teacher that shy kids like me would like. I would never assign group work or call on students who did not have their hand raised. As a shy person, I knew that school was not a place I ever felt at home, so I wanted to make a difference for all my fellow shy humans. This all started to shift in high-school, when I realized that I did not actually like school that much; meaning I was not prepared to spend the rest of my life within the walls of a school building. Unfortunately, however; this posed an issue for me, because all I knew was that I did not want to be a teacher, but I did not know what I actually wanted to do for the rest of my life. Thankfully, my high school had a co-op program that helped me explore a few different possibilities.
I did one placement with the organization at my old elementary school in which I was matched with eleven kids who all had learning, emotional, social, school, or familial difficulties. It was my job to take each of the kids out of class every week for two hours for our one-on-one session. I found this role very challenging for many reasons and I started doubting my abilities. This all changed when a staff member sought me out to help her with a frustrated student who happened to be one of my buddies. It was mere minutes before my buddy was calm after our chat in the quiet stairwell. When we passed the frustrated staff member on our way back to his class, I knew that perhaps I was good at this job. I knew that all this time I spent in this school, where I felt like I was making no difference was worth it because I had created a relationship with these children that meant they were happy to see me even in the tough moments. The only comfort I ever found in this placement was with the children, but that’s all that really mattered.
That same year my final English project was to change the world. After lots of stress and tears, I decided to create a community group for two boys in my community with autism, Owen and Will. While at the time, I did not think this would actually change the world, I did think it would fulfill the requirements of the project. Selfishly, I never thought this would amount to anything important but I did know it would help me pass the class. I was too scared and shy to organize protests, fundraisers, and events like my classmates, so I created what we now call Friendship Club. We met once a week in our church basement doing sensory activities, crafts, games, and going to the park. I believed at the time I was not changing the world because this group was only impacting the lives of two boys. How could two boys spending two hours a week in a church basement change the world? Impossible, I thought. Still unsure where this venture was going to take me in my life, I also accepted a summer job with this family as a full-time respite worker.
I did not realize what a special connection I had built with Owen and Will until I moved away to school in the fall and really missed them. I was lying in my empty dorm room, in the loneliest season of my life, when Stacey, Owen and Will’s mom, texted me. She was sending me good wishes as I finished up my first week of university. She also told me that Will had been asking for me. I had always assumed that every child I supported on my co-ops, all the people I served coffee to, all my classmates and teachers would forget about me because I was just the shy girl who didn’t say much. It was not until this moment that it dawned on me that perhaps I was memorable, perhaps I was doing more than I was giving myself credit for. Shortly after this, I took my first Disability Studies class at King’s and I was hooked. I switched my major almost immediately.
This switch to Disability Studies made me eager to explore the disability world more. I worked at two camps as an inclusion counsellor the summers after first and second year. The second camp I worked at was the hardest two months in my life. It was a very small camp that was designed to help disabled youth gain both communication and job skills. The naïve and hopeful student and caregiver in me just assumed that this meant adapting environments to make disabled people included and productive. Whereas this camp was more about changing behaviours so that disabled people would fit into the typical working world. I had never been more conflicted in my life because this camp was challenging everything I believed to be true about disability.
“Mom, I hate it here. You need to come get me. I’ve overcome a lot of things in my life, but this one is too much for me. I am surrounded by strangers who are trying to fix all the campers. Come get me.”
I cried almost every night in my sleeping bag. I called my mom everyday. I scheduled a meeting with my boss to quit.
My eyes were filling with tears as he pulled me into his office.
“What’s up?” he said.
I took a deep breath and wiped the tears from my eyes.
“I don’t think this is the place for me. I don’t fit in here and I cannot be the camp counsellor you want me to be. I would like to go home.”
After lots of tears, my boss did convince me to stay and committed to having tough conversations with me throughout the summer about our conflicting beliefs. Growing up as a sheltered and shy girl, I had never experienced caring about something so much it hurt my stomach. I am a people pleaser who likes to fly under the radar, but for the first time, I took the longest leap out of my comfort zone to challenge the way it had always been done at this camp. I stood up to my boss when I knew something was not right. I challenged my co-workers when I believed something could be done better. As a person who had never stood up for something she believed in before, and is a huge introvert, working at this camp was an emotional and tiring experience. I remember calling my mom telling her that I was exhausted from constantly advocating on behalf of my campers and her telling me she was happy I had found a home in disability studies because if I was willing to put this much energy into advocating for it outside of the classroom, it must be a perfect match.
I left this camp knowing two things:
First, that Disability Studies was my home and perfect program.
Second, I would never work at camp again.
Working at a camp is like having a baby (I think). It is really hard in the moment but afterwards you forget about the pain and emotion you felt during the actual experience. I know this because, after I left my final camp swearing I would never work at camp again, I applied for and got an inclusion coordinator job at a day camp the following summer. I was really excited for this position. This was until the pandemic hit and my current group home job needed me to stay. Not knowing what the world would look like in the summer, I knew that camps were cancelable but caregiving was not. I turned down my camp coordinator job to live completely alone in London while I worked part-time at the group home.
As much as I thought being stuck in London was a curse it turned into a really big gift, even though I would have never acknowledged it at the time. I was witness to the fact that tough moments really do bring people together. I became closer with my co-workers and the core-members and became more confident in my role as a support worker. In these few months I was lacking touch; at work I was covered in PPE and instructed to stay away from everyone, yet I had never felt more connected to the field of caregiving. My work place really embraced that caregiving is about giving support in all areas of life and while none of us would have anticipated this including a pandemic, this became huge part of life that required more support than ever.
“Virus is over Liza.”
“Not yet. We have to keep being patient” I replied.
“Going home soon to see my family, Liza.”
“I hope so, but we need to wait for the world to be healthy and safe.”
“Go to the doctor, I need to feel better.”
“You’re not sick. There are people out in the world who are sick. That’s why you need to stay here for a while.”
“Virus is almost over, Liza.”
“ I just don’t know. We all just have to be patient together. The virus isn’t over yet.”
“Not yet, not yet, not yet” she repeated to herself as I tucked her into bed and turned off her light.
The pandemic is hard to understand and scary to think about for everyone, but especially for people who don’t have the same level of understanding as you and me. We, as staff, do our best to support residents and talk them through the happenings of the world. Caregiving in a L’Arche group home has been a surreal experience. Like any job, it comes along with its tough moments but the house is built in a foundation of love and every person who walks through that door can feel it. I would have not survived university without my home and family at L’Arche. I do not make friends easily, and the outgoing energy expected of university students is hard for me to match. L’Arche family dinners, dance parties, campfires, goodnight hugs, and movie nights were always there for me to remind me that no matter how lonely I felt as a student or during the pandemic, there was always a family of people who had my back. As my degree comes to an end, my stomach starts to hurt when I think about ever leaving L’Arche because I know it will be nearly impossible for me to find a job I feel this sense of home and peace.
Now, here I am sitting on my couch, looking back on my life and how I got to this place. Being shy has been something I hated about myself until recently. I grew up my whole life getting poor participation and collaboration marks on my report cards. I grew up with teachers telling me that I needed to raise my hand more in class if I wanted to be successful. All my peers would always joke about how they barely ever heard me speak, and would bug me that I should be more outgoing. I never gave myself credit for the impact I was having on peoples’ lives because I assumed that they would quickly forget about the shy girl because as a kid I wanted people to forget I was there. I kept being told during my childhood that being shy was a bad thing and I tried to reject this part of myself. I spent my whole life desperate to fit in somewhere and be passionate about something and I finally found it in Disability Studies. The truth is I am still the same quiet girl I was in grade four who was scared of getting the Sandy Touch. I’m also the girl who stood up and vocalized my opinions to advocate for my campers. Disability Studies has just given me the home and opportunity to explore these beliefs.
This is not a story about a shy girl growing up and becoming less shy. This is the story of a girl finding her passion even before she could put it to words. As a quiet person all I knew was that I wanted to find places that felt like home and along the way. Before I knew about Disability Studies, respite care and group homes, I knew I wanted to make people feel like home around me. I wanted people to know that they were in a safe place in my company, because this was so important to me growing up. Disability Studies has helped me unlearn the shy as a negative label. I now know that shy girls make great coffee servers and neighbours, they make great craft partners and stairwell companions. They are wonderful friends and world changers. They also make great camp counsellors and the best caregivers. It took me a while to admit and accept that I was more than just a quiet, people pleasing girl, but more a passionate learner and caregiver, who just happens to be shy.
Follow along to hear all about the ups and downs in direct support work, young adult life, and allyship – it sure has given me lots to write about! Enjoy some casual, light-hearted tales about all my adventures along the way.
Hi Liza. I thoroughly enjoyed reading your narrative. You have a lot of wisdom. I am happy that you have discovered your strengths and work where your skills are not only valued but vital. We extroverts get a lot of attention and prays through school but if we are paying attention we know how often NOT talking and listening is what other people need. Thank you for sharing your insights. I would love to read more of your writing in the future to help me see the world from another point of view.
Thank you for taking the time to read Susan, we do our best learning from each other! Thank you for your kind words. I hope you’re doing well!