The Power of Community
In 2018, while studying at McMaster University, I was given the fantastic opportunity of doing a 4 month internship with Spinal Cord Injury Ontario.
Working with the organization was one of the most memorable and rewarding experiences of my Masters degree. It was the first time I had worked in a professional environment and SCIO made the transition so easy. All the staff, volunteers and clients I met were so friendly and helpful! Their passion was evident and I felt very privileged to have had the opportunity to learn from everyone’s personal experiences.
During my internship at SCIO, I primarily worked under the supervision of Peter Athanasopoulos (Senior Manager of Public Policy and Government Relations, Executive Director of the Ontario SCI Alliance), Dr. Heather Gainforth (my Masters supervisor, UBC Okanagan), and Dr. Shane Sweet (McGill University). The overarching goal of the internship was to co-develop a method that would allow for the Ontario SCI community to come to consensus about their needs and priorities over the next three years. The identified issues would be used to shape the Ontario SCI Alliance’s upcoming strategic plan.
The team worked together to develop an initial consensus survey, that continued to be refined with input from various SCI Alliance members. The survey was sent out to over 2500 members of the SCI community and the response rate was fantastic. Of the people who took part, 75% had lived-experience of a spinal cord injury, which was hugely important to us.
In April 2018, I presented the results from the survey at the Ontario SCI Alliance meeting. During the afternoon sessions of the meeting, the results I had just presented were being used to make decisions around the Alliance’s upcoming strategic plan. It was really exciting to see research truly being put into practice.
In addition to our primary research project, I had the opportunity to attend a number of meetings with key stakeholders from the community, all while being given the chance to share my own knowledge and expertise. I was also able to further learn about the inner workings of SCIO by working closely with Client Services, Peer Support staff and by visiting different SCIO locations in the province. Thanks to these experiences, I gained valuable knowledge and developed a number of skills that wouldn’t be possible without embedding yourself within a community organization like SCIO.I did my best to be like a sponge and soak everything in that I could and I am so grateful that I did.
One of the most valuable things I took away from my time at SCIO was being able to see the importance of lived experience when it comes to decision-making from a first-hand perspective. At every point of the research project, from initial development of the survey to presentation of the results and beyond, people with SCI provided such unique insights and personal experiences that could not possibly be predicted by someone else. I felt very proud to know that our co-developed method between UBC Okanagan, SCI Ontario, and the Ontario SCI Alliance allowed for the voices of a large number of people with SCI to be brought to the table. I’m hopeful that future research projects for people with SCI can build upon the importance of working in partnership with people who have lived experience.
SCIO provided me with a nurturing environment to grow as a community-researcher. I’m excited to continue working with SCIO beyond the scope of my internship to continue working towards improving the lives of people in Ontario living with spinal cord injuries.