Future directions for disability inclusion
Disability is often viewed as an issue that affects a small subset of the population. Yet the pandemic has broadened the scope of that definition — think long COVID symptoms — which could also include mental health conditions that affect most people at some point in their lives. In other words, disabilities — short-term and long-term — are likely to be a part of everyone’s life, whether personally or as a caregiver, and policy needs to catch up with that reality. While Canadian disability policy has made great strides in recent years, barriers to inclusion continue.
Making disability normal
As a person with disabilities, I need a variety of workplace accommodations to help reduce my pain and function well, including a flexible schedule, ergonomic workstation, dictation software, and the ability to work remotely.
I have hydrocephalus, cerebral palsy, and chronic pain as well as depression and anxiety, which further limit my ability to function. While chronic pain affects my mental health and I need psychotherapy, I can’t afford it because disability-related expenses like physiotherapy eat into my meagre income. I’ve managed to cut back on some expenses since the pandemic started, but my ability to do so is based on my need for isolation to avoid catching COVID, which would have devastating consequences for me (cerebral palsy affects breathing). On the other side, isolation itself comes with a cost: it leads to more depression, anxiety, and loneliness. Of course, that won’t be a surprise to people with disabilities and chronic conditions. Research shows that those of us who are living with such conditions have had the worst health and employment outcomes during the pandemic.
A wider spectrum to promote inclusion
I share my personal story to try and normalize the conversation around the accommodation process and advocate for a more streamlined approach. To close policy gaps and set a future course for disability inclusion, those with lived experience need to be at the table. As experts on their own lives, people who experience episodic or fluctuating conditions or invisible disabilities, for example, can make their daily challenges known to help inform policies around work, health care, and other systems. To ensure that policy reflects the needs of those it affects, scholars recommend that people with disabilities be included in research and be consulted as subject matter experts. Doing so would reduce barriers to social inclusion and bring policy questions around employment and financial security into the open.
An aging population also raises new questions; for instance, in connection with the decline in functional ability as people age. Shouldn’t disability policy account for the many who may find themselves coping with unexpected or new limitations in their daily lives?
In Canada’s most populous province, the Ontario Disability Support Program (ODSP) currently provides income and employment support along with drug benefits only to people with “substantial physical or mental impairment that is continuous or recurrent and expected to last a year or more.” That narrow definition focuses on permanent disabilities and chronic illnesses with no prospect of improvement — excluding episodic, temporary, or fluctuating disabilities like long COVID, which can include brain fog, shortness of breath, and other debilitating symptoms. While coverage has recently been included in the Ontario Health Insurance Plan, people with long COVID are having challenges navigating the benefits system, since it is considered “invisible and hard to diagnose.”
Closing the gaps
While social assistance programs are essential, functional limitations are central to receiving adequate benefits. In other words, the worse a person’s condition is, the more financial support they qualify for. At the same time, the program makes it hard for people with disabilities to break the cycle of poverty and income support. To get off social assistance, one must be able to work full time (or at least consistently enough to earn a living). But most people on ODSP can’t work, and those who can must often take low-paying jobs (with long hours in front of a computer) that don’t reflect their skill levels (like call centre jobs).
Unfortunately, these kinds of systemic barriers to employment are all too common. In 2019, I applied to the federal government inventory for students with disabilities, an employment initiative for students to work in the public service and gain valuable experience. However, my application was denied because of my part-time student status (the program was only available to full-time students). Although I explained that my disability made it necessary for me to study part time, that was not sufficient to be included in the pool.
Another example is from the Accessible Canada Act, passed in 2019, which aims to remove barriers related to employment, the built environment, communication, information, program delivery, and transportation. In many cases, work adjustments can be minor — a modified schedule, telework, or an ergonomic workstation — but cumbersome approval processes often lead to frustrating delays.
Similarly, the federal government has implemented a public service Accessibility Strategy that seeks to hire 5,000 people with disabilities by 2025. Applicants for these positions must provide medical documentation in each selection process to receive assessment accommodations. That sounds reasonable enough, yet having a centralized service for accommodation documentation would reduce the cost of doctor’s notes for people who often have limited incomes (and may not have access to a family doctor).
Bringing these barriers to light has been one part of disability advocacy. Other work has led to Bill C-22, the Canada Disability Benefit Act, a monthly amount that aims to reduce poverty for people with disabilities. Within a year after it passes (it is now before the Senate), the bill will provide them with much-needed funds and hope for a better future. Over that 12-month period, C-22 outlines plans to give “persons with disabilities from a range of backgrounds” the chance to collaborate on its regulations, application process, eligibility criteria, and the amount of the benefit. It is my hope that such consultations will lead to an expanded definition of disability and enable equitable access to adequate supports, so people with disabilities in Canada can participate fully in professional and civic life.
