Working with and advocating for the needs of those living with disability. Reflections from and opportunities for USask medical students.

By Alicia Thatcher, MED II

I entered medical school in August 2015 with six years of experience (in both employment and volunteer capacities) working with individuals of all ages with intellectual and physical disabilities. A three-week volunteer experience at Camp Easter Seal at Manitou Beach developed into a passion for working with this diverse population, full of rich personalities and unique abilities for building relationships and connecting with the world. That experience led me to active and continued involvement with Camp Easter Seal, Best Buddies, Special Olympics, Autism Centre, Cosmopolitan Industries, and Next Chapter Book Club, and the medical student interest group Advocates for Bringing Light to and Education on Disabilities (ABLED). In the years directly leading up to medical school, I personally committed to lifelong work in this field. I have been privileged to be involved with this community through a number of different projects and hope that my work will contribute to removing some of the societal barriers that have become the norm for many within the community.

Throughout my last two years of high school, my pre-med studies at U of R and U of S, and my first year of medicine, I was involved with the Best Buddies program, both as a member or chapter president. Best Buddies is an international not-for-profit organization that matches adults and students who have intellectual disabilities with student volunteers to break down barriers and facilitate one-to-one friendships. Student volunteers pledge to spend time with their buddy twice a month and telephone, email, text message or write a note once a week. Over my 7 years of participation, and during my tenures as president of various chapters, the participation of student volunteers grew significantly, and the program helped to establish friendships that continue to flourish.

In 2015, in Saskatoon, I joined a committee working with an affordable housing developer on a project to build an “intentional community” apartment; a new inclusive and accessible housing option for people with and without intellectual disabilities. There will be approximately 30 suites, with 1/3 going to university students, and 2/3 going to adults with intellectual disabilities. This apartment building will be downtown and will hopefully include study space, exercise equipment and a yoga studio, a community kitchen, green space, and a bike share program. This opportunity became available through my active involvement with the Saskatchewan Association for Community Living (SACL) and as a direct result of involvement with the agencies listed above.

Last year I formed Saskatoon’s first “Next Chapter Book Club” – a fully accessible book club for adults with and without intellectual disabilities. Myself and two other volunteer facilitators met weekly at a local café with 5 regular book club members. Many people wrongly assume individuals with intellectual disabilities are unable to read. Although literacy skills are enhanced, the philosophy of the book club is to focus on “reading to learn” rather than “learning to read”. Members are encouraged to read for enjoyment rather than for accuracy and includes group reading, shared or adapted reading, and discussion of what was read. Members are provided meaningful opportunities for lifelong learning, building social connections, community inclusion, and learning life skills like budgeting and problem solving. As I have moved to Regina this year, I have yet to get involved with a new book club. Individuals in Saskatoon interested in volunteering with or starting their own book club should contact SACL.

The day I was accepted into the College of Medicine, I started to plan my trip to Louisville, Kentucky, where I shadowed at the Lee Specialty Clinic – an interdisciplinary clinic for patients aged 16+ with intellectual and developmental disabilities. In my years leading to medicine, I had researched a number of organizations and initiatives that support people with intellectual and developmental disabilities and committed to learning all that I could to contribute to the community. The experience was very informative and inspiring and provided insight into the startling overmedication of this population contributing to significant weight gain, challenging behaviours and significant problems with both physical and mental health. I learned about some of the ins and outs of managing pain and other symptoms in patients are who non-verbal or have difficulty communicating, and about working with a behaviour analyst and a variety of specialties to get to the bottom of the cause of challenging behaviours such as aggression. Many common health problems as simple as ear infections can go undiagnosed. I learned some of the most important and most common problems and investigations to never miss in this population. I plan to connect some of the Lee Specialty Clinic staff with my classmates through my involvement with the Advocates for Bringing Light to and Education about Disabilities (ABLED student interest group).

Following my experience at the Lee Specialty Clinic, I travelled to Chicago to attend the annual conference for the American Academy of Developmental Medicine and Dentistry (AADMD). I am currently working on connecting Canadian health care professionals working in this field to create a committee which can discuss the issues unique to the Canadian health care system while collaborating with the AADMD to strive for similar goals. This project is only in its infancy, so if anyone is interested in working with me on establishing this I would happily welcome any support. While developmental pediatrics is established in Canada, there is no developmental medicine specialty for these patients after they turn 18 years of age. It is my desire to open a clinic, similar to the Lee Specialty Clinic, in Saskatchewan in the future.

Last, but certainly not least, my experiences in this area led me to attend an American Sign Language immersion camp in Calgary where I continued to improve my skills in communicating with individuals who are deaf and hard of hearing. I have had a number of opportunities to use these skills while volunteering and I intend to use this skill in future interactions with patients. I would encourage anyone interested to take ASL classes from Saskatchewan Deaf and Hard of Hearing Services (SDHHS) in either Saskatoon or Regina.

These experiences have shaped my future as a physician and the individuals I have been privileged to meet have changed my world for the better. I am excited to act as vice-president of the ABLED student interest group this year and to use this platform to share my passion for working with this population with my classmates and community. I hope to be able to contribute as much to their future as they have to mine.

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