HOW LIVED EXPERIENCE CAN CHANGE YOUR POLICY WORK
Jennifer Robson
I am in the process of losing my disability. For you and me both, the term “disability” can evoke certain images and assumptions. For me, these are assumptions that I have previously carried into my work in teaching, research and advising on public policy. I thought I knew much of what I needed to know:
Sooner or later, unless we sadly have a sudden and speedy death, we will all experience disability. Yes, I knew that.
The individual conditions that are officially recognized as disability are not uniform in their nature, origin, duration or impacts on daily living, nor are the adjudication processes used by different governments or even departments in the same government. Yes, I knew that.
Accessibility by design, that is ensuring accessibility for all users of a space, good or service, is, ultimately, more efficient, and effective than retroactive efforts to re-engineer, adapt or translate to improve accessibility. Yes, I knew that.
This, in turn, means that disability is as much if not more of a social construct than a medical one. Persons are disabled because the environment around them isn’t accessible and inclusive to them given their personal characteristics and abilities. Again, I knew that. But I didn’t really know it, not in my bones, not the way that lived experience can teach you.
I am now in the process of losing my disability. I am writing this while I recover from what will be a life-changing hip surgery. Without over-sharing, after an injury to a joint with a congenital risk factor, I rapidly developed end-stage osteoarthritis. This meant I lost the ability to walk any meaningful distance, even with a cane, or perform many of the normal activities of daily living for someone of my age and family status. When I recover from this surgery, I can expect to get back to just about any physical activity I want. No more mobility constraints – at least not until aging takes its expected toll. But the lived experience will stay with me. I can’t unsee the myriad ways our built environments, our regulatory and tax systems, to name a few, create barriers to inclusion and access. Here are just a few examples I’ve noticed:
The campus I work on is supposed to be accessible, but the distance between buildings with essential services and spaces, the requirement that members of campus self-identify and navigate an entire catalogue of accessibility resources purported to be available to them, and even silly things like poor placement or non-functioning automatic door buttons, means that some persons with disabilities will not come to campus if they can avoid it. I know I did.
In Ontario, 24% of residents report having some form of disability. The most frequent forms of disability in Canada are related to pain, flexibility, and mobility. Gaps in public transit services, particularly accessible vehicles or dedicated services for persons with disabilities, can leave many dependent on transportation by car. Yet the legal standard for the supply of accessible parking (in regulations under the Accessibility for Ontarians with Disabilities Act) mandates that a maximum of 8% of parking spaces be accessible, and this for the very smallest parking areas, declining to 2% or less for the largest. When the limited spaces are used up, the venue is no longer as accessible to the next person with a disability.
The federal Disability Tax Credit is a non-refundable credit that recognizes some out-of-pocket expenses for some persons with disabilities and reduces their taxes owing (or those of their caregiver) by a maximum of $1,330 ($8,870 x the non-refundable credit rate of 15%) for adults ($2,107 for parents claiming a child with a disability). But the credit is also the gateway to eligibility for other benefits like the Canada Disability Savings Bond. The credit can only be claimed once the Canada Revenue Agency has, in advance, certified a claim using information from a designated medical professional. Provincial health insurance generally does not cover doctor’s fees to complete the application form. Out-of-pocket costs (with a suggested rate of $150 per hour for physicians in Ontario) to have the form completed might be prohibitive to many persons with disabilities, who are at much greater risk of poverty compared to other Canadians. In remote communities where access to primary care is severely restricted or irregular, barriers to the credit are even more pronounced.
I write this speaking for no organization in the disability community, and not even as a disability scholar. But I have seen again and again, how individual lived experiences shape the perceptions and decisions of our policymakers. I’ve seen, for example, breadwinning male politicians who couldn’t really understand why early learning and care is so important because they had wives who took primary responsibility for childcare. They were Liberals by the way. Or Conservative politicians who had a brush with cancer that changed their views on the regulation of certain toxic substances. Politics may be a team sport with parties gunning to display their ideological differences as a form of product differentiation for voters, but each individual Parliamentarian and public servant brings with them their formal training, past professional experiences, personal experiences, and biases to every step of the policy process they engage with. This includes any first-hand experience with disability they may have or lack.
I cannot tell you what share of our sitting Parliamentarians have experienced disability first-hand, or what share of federal candidates for office in the last election identify as a person with a disability. Elections Canada’s candidate information form has no box to tick to identify as a person with disability. The database of current and past Parliamentarians maintained by the Parliament of Canada doesn’t record whether the Senator or MP had a disability. Internal party “greenlighting” documents and processes (such as this one from the Green Party; similar forms for the three major parties were not readily available online) may allow potential candidates for office to self-identify as a person with a disability, but this sensitive information isn’t widely shared, for obvious reasons. Opportunities for self-identification are not without risk of harm – the Liberal Party of Canada, for example, considered self-declared experience of mental illness as potentially disqualifying until 2004.
The demands of public life may be such that persons with disabilities are, with rare exceptions, excluded from public office. Given that one in five Canadians has one or more forms of disability, it’s also possible that the public officials pulled from that population have greater experience with disability than they are willing to share publicly. Whichever is true, it means that the lived experience of disability is either excluded or veiled in the rooms where policy decisions are made.
Bill C-22, the legislation enabling a process to create a new Canada Disability Benefit, promises something better. It creates a legal requirement for the government to collaborate with, not just consult, persons with disabilities in setting the details of the benefit design and implementation, with public reporting on progress to Parliament. Maybe this is a start. Maybe this is a way to deal with barriers to access and inclusion in policy development. Maybe this legislated process might help compensate for gaps in the understanding of disability among those who otherwise are tasked with making policy decisions. This will only be the case, now that Parliament has finally passed the bill, if the executive embraces these new requirements.
I am in the process of losing my disability. But the experience of it will forever change what I think about and how I think about policy in Canada.
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ABOUT THE AUTHOR:
Jennifer Robson - Jennifer is Program Director and Associate Professor of Political Management at Carleton University where she teaches in Public Policy and Research Methods. Prior to joining Carleton, Jennifer Robson was director of policy for the non-profit SEDI (now Prosper Canada) and worked in the federal public service. Between 1994 and 2000, she worked in several political (exempt staff) roles. Her primary areas of research are at the intersection of household finances, particularly for lower and modest-income people, and the design and implementation of public programs including tax policy, financial capability and financial services, income security and household liquid savings. Jennifer holds a BA Hon. Psychology (Ottawa), MA Political Science (Carleton), and Ph.D. Public Policy (Carleton).
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