About the Authors: Justin Lin, Tahira Devji, and Sahibjot Grewal are three University of Toronto Medical School Students who are completing a Community-Based Service Learning Placement at SMILE Canada
One of the central tenets of the University of Toronto’s Temerty Faculty of Medicine is a commitment to the development of future academic health leaders who are adaptive to the needs of patients and communities from diverse and varied populations, and committed to providing care in an equitable, individualized and holistic manner.
As part of the Integrated Clinical Experience: Health in Community (ICE: HC) in the Foundations Curriculum, 2nd year medical students are partnered with a local community organization in Toronto for a Community-Based Service Learning placement. It is anticipated, through this placement and the field experiences, that students will engage in and contribute to meaningful work that services the communities within which they live.
At the start of the year, we were partnered with SMILE Canada Support Services, a charity dedicated to supporting racialized children and youth with disabilities and their families. Their focus is diverse Muslim communities including refugee and new immigrant families. SMILE supports families through various programs and services in a culturally responsive manner, such as financial assistance, mentorship programs, therapy programs, parent support groups, service navigation and much more.
One of the goals of this placement is to devise and lead an advocacy project in collaboration with the community organization. To enrich our experience and provide us with a framework for initiating our advocacy project, we performed interviews with clients who work with SMILE. The purpose of these interviews was twofold: 1) to develop an approach to interviewing from a trauma-informed lens, and 2) hear first-hand from marginalized families about their lived experiences and appreciate how intersectionality affects their ability to access necessary health care services and supports.
We were very fortunate to be able to learn about Dima Al-Dahouk and her family. Dima was paralyzed at the age of 3 following an injury from a car accident, rendering her as paraplegic. Despite the many barriers she faced, she prevailed and became an international table tennis champion. She is married to Juha, another para-athlete and together they have 2 children, one of whom is 7 and is diagnosed with Down Syndrome. After fleeing war in Syria, today the family lived in Ontario, Canada.
During the interview, Dima really wanted to share her family’s experiences in Canada as people with disabilities. For her son, she highlighted that funding cuts from the government have impacted his quality of education. Dima shared that the school he attends was not ready for him, and they did not do any assessments to understand his disability to determine how much support he needs. This impacts the quality of support and education he receives, as he is not in the optimal environment for his learning.
Dima also shared the importance for there to be more advocacy and funding to support children with special needs, as they all have unique needs and different expenses. She highlighted an example where she learned that smart limb replacements for children are not currently covered - only the non-functional prosthetic limbs are - therefore adding barriers in accessing needed supports. Accessible housing was a key barrier that has affected the family, as it is both scarce and expensive, which makes it difficult for low-income families such as Dima’s. To add to the financial burden, there are further costs associated with accessibility such as with vehicle modifications, which again there are no additional supports for. Dima wants her concerns, and those that others with disabilities share, to be taken seriously by officials able to invoke change.
The opportunity to hear Dima’s story was both inspiring and sobering. For us as future physicians, it was an important reminder that providing exemplary care demands an understanding of the complex and nuanced needs of our individual patients as well as the structural barriers that they may face. We must recognize the great honour we have to hear patients’ stories, and the unique opportunity to stand in solidarity with patients and provide kind, compassionate, dignified, respectful, evidence-based care. We must consider the impact of personal, social and environmental factors, and the intersectionality of these social determinants of health on health, illness and disease burden.
Moreover, we must have a deep appreciation for the unique role and ability physicians have in advocating for patients from marginalized populations and providing holistic care. Holistic care does not necessarily translate to solving every single problem for patients, but rather listening to patients with earnest and undivided attention, and addressing social determinants of health as part of routine care by identifying appropriate supports (e.g. support groups, financial resources, etc.) and engaging allied health professionals to ensure the patient’s needs are being met. Unequivocally, we must understand the importance of effective, efficient, and safe care, but also care that is timely, equitable and patient-centered. This can be achieved by appreciating the value and power of unhurried conversations and seeing our patients in high definition.