Youth and Episodic Disabilities: Navigating Life’s Ups and Downs

Living with an episodic disability can present unique challenges, but the experience is shared by many across Canada. Of the 13% of Canadian youth with a disability (over 540,000 individuals), over 50% of persons aged 15 to 24 report having an episodic disability that fluctuates or recurs in nature.^{1 2} Conditions such as mental health disorders, multiple sclerosis, and HIV are among the many that can cause these episodic patterns of disability.

The 2022 Canadian Survey on Disability revealed a significant rise in episodic disability rates, with 20% of youth aged 15 to 24 reporting such conditions. This marked a 7% increase since 2017 and represents the largest rise in episodic disability rates among all age groups in Canada.³

For young people identifying as Indigenous, Black, or from other racialized communities, as well as those in 2SLGBTQ+ communities, the experience of living with an episodic disability is often compounded by systemic discrimination and historical injustices.⁴ Indigenous youth, for example, are more likely to experience chronic health issues due to the long-lasting impacts of colonialism on health and social determinants, leading to a higher incidence of conditions that cause episodic disabilities.^{5 6}

This growing prevalence and disproportionate impact among key youth populations underscores the urgent need for tailored interventions and support systems.

The Impact on Education: A Balancing Act 🎓

With a steady rise in the number of post-secondary students living with disabilities, institutions face increasing pressure to provide adequate services. However, for youth with episodic disabilities, navigating schoolwork can be particularly complex. Education for youth living with episodic disabilities is often fraught with obstacles—particularly for students from racialized or low-income backgrounds, who may lack access to supportive networks and resources. Whether in high school, college, or university, episodic conditions can be unpredictable, creating barriers to keeping up with academic demands, including exams, assignments, and classes.

Many students require accommodations like extended deadlines or flexible scheduling, yet not all institutions are equipped to provide the necessary support. This can exacerbate stress and create further obstacles to achieving educational goals.⁷

Navigating Employment with an Episodic Disability 💼

Entering the workforce as a young person with an episodic disability presents its own challenges. Finding a job that offers flexibility, understanding, and support can make a significant difference. In 2023, the employment rate for youth (aged 15 to 24) with a disability was 51.9%, lower than that of youth without disabilities (57.7%).⁸ Unfortunately, many workplaces are unprepared to accommodate fluctuating needs, leading to job instability and financial stress. Estimates suggest that up to one in six working-age adults in Canada report experiencing fluctuating limitations in their workplace due to their episodic disability.²

In 2016, over 30% of individuals with an episodic disability that affects their ability to work were either unemployed or not in the labor force.^{10 11} This trend is concerning, as employment is often closely tied to financial stability, access to healthcare resources, social inclusion, and overall well-being.^{12 13}

Realize’s Initiatives: Building Inclusive and Equitable Spaces 💪

Realize actively works to create inclusive, accessible, and empowering spaces for all youth, particularly those from historically marginalized communities. Through programs and resources, Realize supports young people in navigating the complexities of education, work, and healthcare with the following initiatives:

Youth Episodic Disability Forum: A community-driven space fostering collaboration, knowledge-sharing, and advocacy, particularly in support of disability justice for marginalized youth. This platform encourages engagement from diverse backgrounds to bring intersectional perspectives to the forefront of the disability justice movement.

Youth, Episodic Disability, and Work Webinar: This event presented findings on employment programs for youth with episodic disabilities and featured young people sharing experiences of employment challenges and resilience, emphasizing the additional barriers faced by Indigenous and racialized youth.

And More to Come!: Realize is always working on new ways to offer support, so stay tuned!

Moving Forward: Advocating for Systemic Change

Realize is committed to ongoing advocacy to dismantle barriers faced by marginalized youth with episodic disabilities. By collaborating with communities, institutions, and policymakers, Realize works toward creating environments where all young people—regardless of background—can thrive.

For more information, contact Tess Kern at tkern@realizecanada.org to join the conversation.

1. Statistics Canada. (2018). (rep.). Canadian Survey on Disability, 2017. Ottawa, ON. ↩︎
2. Morris, S. P., Fawcett, G., Timoney, L., & Hughes, J. (2019). The dynamics of disability: Progressive, recurrent or fluctuating limitations. Statistics Canada. July 10, 2024. ↩︎
3. Statistics Canada. (2023, December 18). Canadian survey on disability, 2017 to 2022. The Daily. Retrieved from https://www150.statcan.gc.ca/n1/daily-quotidien/231201/dq231201b-eng.htm. ↩︎
4. Rajan, D. (2021). (rep.). Serious Problems Experienced by Diverse People with Disabilities: Western Canada. Retrieved 2024, from https://www.justice.gc.ca/eng/rp-pr/jr/pwdwc-phcw/docs/RSD_RR2021_Persons_with_Disabilities_Western_Canada_EN.pdf.
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5. Kim P. J. (2019). Social Determinants of Health Inequities in Indigenous Canadians Through a Life Course Approach to Colonialism and the Residential School System. Health equity, 3(1), 378–381. https://doi.org/10.1089/heq.2019.0041 ↩︎
6. Loppie, C., & Wien, F. (2022). Understanding Indigenous health inequalities through a social determinants model. National Collaborating Centre for Indigenous Health. ↩︎
7. Jetha A, Navaratnerajah L, Kondratowski S, Parmassar M, Tucker LB, Gignac MAM (2024). Impact of employment and income support interventions on the health of young adults with episodic disability: Findings from a systematic review. Scand J Work Environ Health. 2024 Mar 1;50(2):122-128. doi: 10.5271/sjweh.4133. Epub 2023 Dec 7. PMID: 38060325; PMCID: PMC10928491. ↩︎
8. Statistics Canada. (2023). Table 1 Employment and unemployment rates of persons with and without disabilities by age group, Canada, 2022 and 2023 [Data table]. https://www150.statcan.gc.ca/n1/pub/71-222-x/71-222-x2024002-eng.htm  ↩︎
9. Morris, S. P., Fawcett, G., Timoney, L., & Hughes, J. (2019). The dynamics of disability: Progressive, recurrent or fluctuating limitations. Statistics Canada. July 10, 2024. ↩︎
10. Furrie, A., Gewurtz, R., Porch, W., Crawford, C., Haan, M., & Stapleton, J. (2016). (rep.). Episodic Disabilities in Canada. The Centre for Research on Work Disability Policy (CRWDP). ↩︎
11. Statistics Canada (2014). Canadian Survey on Disability, 2012: Concepts and Methods Guide. Retrieved from http://www.statcan.gc.ca/pub/89-654-x/89-654- x2014001-eng.htm ↩︎
12. Jetha, A., & Gignac, M. A. (2023). Changing experiences, needs, and supports across the life course for workers living with disabilities. In Handbook of Life Course Occupational Health (pp. 1-22). Cham: Springer International Publishing. ↩︎
13. Canadian Human Rights Commission, Report: Roadblocks on the Career Path: Challenges Faced by Persons with Disabilities in Employment, Canadian Human Rights Commission, 2018 CanLIIDocs 10545, <https://canlii.ca/t/sjd9>, retrieved on 2024-07-23
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