We need a new narrative on disability.
Disability typically is understood as the problem of a selected group of individuals who meet a defined set of conditions. This primary focus on the “people with the problem” has resulted in a narrow framework for understanding disability and for developing appropriate and effective policies.
The experience of disability is intrinsic to the human condition. Everyone copes with some type of functional limitation to varying degrees and at different stages in their lives. Temporary impairment may occur at any time and is part of living. Yet disability policy continues to focus on a limited segment of the population.
We need to reform our policies that currently fail to capture the fact that disability is a population-wide concern.
The term “disability” refers not to a single state but rather to a wide spectrum of conditions. These include physical limitations, such as mobility, visual and hearing impairment. Various invisible disabilities, including cognitive limitations and mood disorders, are less readily identifiable but can be equally difficult.
The world has also seen a rising incidence of chronic illness. Due to medical, social and technological advances, people are living longer with these conditions, such as HIV and diabetes, which used to mean severe incapacitation or shortened lifespan. Some chronic conditions, such as multiple sclerosis and Crohn’s Disease, are “episodic’’ in nature. While they are long term and permanent, their symptoms are expressed only intermittently.
There are also new challenges which are still not well understood, notably long COVID, which can seriously impair daily functioning. In July 2021, long COVID was added as an accepted condition that could result in a disability under the Americans with Disabilities Act.
Many individuals are born with a disability while others acquire a disability at some point in their lifetime due to an illness, accident or injury at work, play or home. Still others face functional limitations involving hearing, sight, cognitive and mobility impairment as a result of aging.
While only some people live with severe and permanent impairment, everyone is potentially at risk. Moreover, the need for some form of accommodation and support in later life is not the exception but the rule. The disability rate for older Canadians overall is 43 per cent, nearly double what it is for the 55-to-64 age group (23 per cent).
When broken down into age brackets, it becomes clear that the prevalence of disability rises as we age. In the 65-to-74 age group the disability rate is 33 per cent. In the 75-to-84 age group the disability rate is 52 per cent. In the 85-and-over age group the disability rate is 73 per cent. The presence of, and potential for, functional limitation in Canada’s rapidly aging population is a significant challenge that few policies explicitly acknowledge.
Canada needs to move toward a policy framework in which functional limitation – to greater or lesser degree, whether permanent or temporary, episodic or ever-present – is considered the norm. However, this type of conceptual shift has several policy implications. Here are just a few.
First, disability should be an integral part of every policy conversation. It needs to move from back-of-the-envelope to front-and-centre main page and stage. This means every policy shop in the country must consider how best to accommodate functional limitations and reduce all physical, procedural and attitudinal barriers. A disability lens can be applied to assess the effectiveness of these policies with respect to inclusion, accessibility and accommodation.
In other words, every policy discussion – whether concerned with housing, education, health, transportation, communications or whatever – should include a disability component. Better still, every policy conversation should be required to take into account not the disability of a few but rather the wide spectrum of differing ability that is found in the general population.
Second, a human-rights approach must guide the design of all policies and programs related to disability – and ideally all policy domains. Moving from a service-based to a human-rights approach to disability means enabling participation in all facets of community life.
A human-rights approach to disability implies a positive obligation in which governments are both expected and required to put in place measures to ensure full participation in society. This approach to disability is more proactive than simply reducing or removing multiple barriers that the policies and programs themselves often create.
A vital step in adopting a human-rights approach to disability is to design the world so that everyone of all ages and capacities can participate. Every policy domain needs to frame its work within the construct of inclusive design.
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Canada has been moving slowly in this direction by ratifying the United Nations Convention on the Rights of Persons with Disabilities in 2010 and implementing the Accessible Canada Act in 2019. Bill C-22, a new Canada Disability Benefit Act, passed third reading in the House of Commons and will now be reviewed by the Senate. The hope is that this new tax-free, monthly benefit will significantly bolster the low income of people with disabilities, 23 per cent of whom live in poverty.
Next, inclusive design needs to be the norm. Inclusive design refers to the creation and design of environments, products, programs and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. Inclusive design is helpful not only for individuals with functional limitations but for all community members, including parents with babies, young children and older adults.
The concept and practice of inclusive design would apply to homes, workplaces and communities right from square one. It would not be necessary to spend substantial sums on retrofit because accessibility would be baked into the initial planning and design.
While disability is always cast as a social policy issue, it is equally relevant to architects, urban planners, housing developers and product designers. Inclusive design should be the conceptual foundation for all policies, programs and practices.
In addition, workplaces need to do more to embrace diversity in all its forms – whether linked to race, religion, Indigeneity or disability.
In the United States, many accommodations were introduced by businesses during COVID, which included staggered work schedules, telework, remote client interfacing and conferencing. These modifications were already familiar to workers with disabilities. The accommodations that had been tailored to their needs became an important source of workplace innovation that benefitted all employees.
In the U.K., the Disability Confident program makes the business case for hiring people with disabilities as well as retaining current employees with diverse functional capacities. The program is built on the premise that the recognition of people with disabilities as both capable workers and potential consumers gives participating businesses a significant competitive edge.
Finally, there will always be a need for disability-specific programs and support services for some individuals. But these programs and services must be drastically improved. People with disabilities often face a catch-22 situation when they seek various forms of assistance. To qualify for financial aid or disability supports, for instance, applicants need to show proof of severe limitation in functional capacity.
But here’s the catch. The primary way that people with disabilities gain independence is to demonstrate profound dependence. The greater their incapacity, the more supports they receive. In other words, doing worse means doing better.
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Yet the reverse is also true. Once eligible for assistance, those who manage to improve their circumstances typically get penalized by these programs that begin to reduce financial aid through clawbacks or withdraw the provision of equipment or other supports. In this case, doing better means doing worse.
Does this practice make sense? Supports should continue to remain in place to ensure, rather than jeopardize, independence and full participation in society.
It’s time to move beyond designing programs that try to remove people with disabilities “from the cracks” and acknowledge that disability is a disabling concept. Canada’s current policies don’t sufficiently recognize or address the fact that various forms of functional impairment are prevalent across the entire population.
Inclusive design and accommodation, regardless of a person’s age, condition or functional abilities, must be the foundational principles of all public policy. It’s time to fundamentally reframe our thinking on disability.