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The PROUD Project

The Phenomenological Research/Remedies on Employment & Disability (PROUD) Project is a multi-year research initiative studying disability and employment.  The study compares the experiences of disabled employees, employers who hire people with disabilities, and their coworkers, across five countries:  Canada, the United States, the United Kingdom, France and Belgium.

Disabled Lives Matter

Canadian Reflections on the
30th Anniversary of the
American with Disabilities Act
26 July 2020

Thirty years ago, the US Congress passed the Americans with Disabilities Act, a landmark piece of civil rights law that many hoped would fundamentally change the lives of disabled Americans. It also had a resounding impact around the globe and stood as an example of legislation which mandated the physical renovation of private and public spaces and, of the workforce, to accommodate disabled individuals. Similarly, the Accessibility for Ontarians with Disabilities Act (AODA) which came into effect in 2005 also held great promise for removing systemic barriers limiting employment and physical accessibility for disabled Ontarians.

A little over 10 years ago I published an article which compared American and Canadian legal approaches to the integration of disabled persons in workplaces. Sadly, my research found both systems wanting. Whether it is the ADA or Canada’s Charter of Rights and Freedoms, federal employment equity legislation, provincial human rights codes or even the Accessibility for Ontarians with Disabilities Act I (AODA) law, it appears does not necessarily incarnate actual change. To be clear, there is no doubt that as a result of the ADA, it became easier for wheelchair users and others with mobility and sensory limitations, to navigate physical environments such as public buildings and transit systems in the US. Public transport did become more inclusive. Workplaces however did not. US courts eviscerated the statute and over 90% of disabled plaintiffs lost lawsuits for workplace accommodation. In Canada, human rights tribunals and the courts were more expansive and kinder to those seeking equity. However, these decisions did little to change rates of unemployment and gross under-employment of disabled Canadians. A Catch-22 occurs in which, because few visibly disabled populate the workplace, there seems to be little reason to renovate employment policies behaviours and spaces, but it is precisely because these accommodations don’t exist that qualified disabled individuals remain excluded from the workforce. Organizations thus often deem adaptations to be prohibitively expensive or unreasonable to implement. The disabled community remains financially weak and thus lacks the economic power to launch suits challenging inaccessibility. Sympathetic court decisions can’t be reinforced by the reassertion of more legal challenges — in the manner that the Canadian gay community has leveraged its ability to win repeated lawsuits, thereby reinforcing statutory rights. The AODA aims to make the province fully accessible by 2025, but given current conditions, this seems unlikely.

While there are certainly ovular moments in the disability movement of which Canadians can be proud: Terry Fox, Rick Hansen, Jim Sinclair’s speech admonishing “Don’t mourn for us,” which started the international neurodiversity movement, and the Supreme Court “Boisbriand” judgement; but even so, disabled Canadians remain disadvantaged within society. Ironically, the COVID-19 pandemic has made this outsider status even more apparent.

In the summer of 2020, all over the world, as a result of the pandemic, office and educational workers are now telecommuting and video-conferencing as they self-isolate at home. The speed with which organizations have made tele-communicating “work” is staggering. Businesses and organizations which previously refused to allow disabled employees these very same accommodations to either secure or retain employment, now need to adopt them to survive. The irony is very clear to those in the disability community.

As the pandemic left China and moved into Europe and North America, it was obvious that the elderly and those with pre-existing conditions and disabilities were being disproportionately affected with higher rates of serious infection and death. Despite this knowledge, American and Canadian governments and medical communities created policies which inadvertently exacerbated the negative impact of COVID-19 on the vulnerable and disabled. For example, in the scramble for ventilators, California sought to catalogue the home-based ventilators of its disabled population in case they were needed for ‘normal’ people who became stricken with COVID in the hospitals. In New York State, hospitalized ‘COVID positive’ long term care patients were returned to their residences to clear out acute care beds even though these patients were still shedding virus, thus seeding infection and death inside care homes. In Ontario, policy makers declared that inhabitants of long term care homes would not be taken to hospital even if they became critically ill with COVID 19 and put in place mechanisms to limit transfer to hospitals from long term care. Administrators of homecare and long term care were asked to reassign staff and supplies to funnel them toward acute care. With Italy already triaging scarce medical resources away from the elderly and disabled, Canadian bureaucrats followed suit. Shortages of personal protective equipment (PPE) and personnel further devastated the situation in Ontario and Quebec residences. Other policies intended to protect the elderly and disabled in these institutions, have forced them into prolonged periods of intense social and physical isolation — with little innovative thinking to offer care and stimulation as an alternative. Ontario disseminated a triaging protocol to medical personnel that deliberately prioritized intensive care resources for those without underlying conditions and denied these services to those who already received care assistance at home. (The protocol was eventually withdrawn). The overall ethos seemed to be that the ‘young and fit’ needed to be prioritized and, some seniors even expressed a willingness to sacrifice themselves for their grandchildren. Those in care, the elderly and disabled members of society were pitted against the young and healthy persons. At the outset, the disabled, the chronically ill and the elderly were expendable. They were treated as if they didn’t make any valued contributions to their communities. Ageism and ableism abounded.

As of this summer (the 30th anniversary of the ADA and the 15th of the AODA), over 80% of pandemic deaths that have occurred in Canada , occurred in long term care — it is the worst rate in the world (although the disabled and elderly have suffered disproportionately elsewhere as well). Long term care remains a separate realm in this country — as do the lives of the disabled. The facilities have been underfunded for decades. The adoption of the ADA (and the AODA) does not make adequate resources available for the disabled. The pandemic has made the lack of space, personnel, bathrooms, and equipment go from very poor and inadequate, to negligently tragic. We discovered that provincial governments seemed uncaring and impotent when confronted by PPE shortages, work refusals, filth, dehydration, and soaring infection rates in this population. The military eventually had to be called in and it released a scathing report about the conditions that our ‘beloved’ seniors live in.

But Canadian care workers can’t be blamed for this appalling lack of consideration for the disabled and elderly. For decades they’ve been forced to work in understaffed conditions, dilapidated environments, with poor or nonexistent training and substandard wages. Immigrants and refugees tend to populate the lower level “caring” industry serving the disabled and elderly. They lack economic, social and political power to make the changes they know are needed but are powerless to affect. Meanwhile for-profit-firms made money even as people who needed palatable food, clean pleasant surroundings and attentive carers, didn’t receive them.

Few realize that those who require care “beyond acute health care” must rely largely on their own resources in Canada. Assistive devices such as wheelchairs, canes, crutches, guide dogs, ramps and lifts are all financed outside of the Canada Health Act. Given the extremely low rates of employment for people with disabilities, most are unable to buy the care and equipment they need. They turn instead to paltry government programs.

For example, the federal Canada Pension Plan only pays out to those who contribute — and its payments are in proportion to the tithings it’s received from any individual. If you’re born disabled or become disabled young and can’t work, you’re ineligible.

The provinces have public disability pensions but all of them are based on a criteria of indigence. Technically, a disabled person needs to divest themselves of any capital assets before they can apply to be considered for a provincial disability pension. In Ontario and British Columbia the pension is about $1100/month. (And of course, a disabled person is penalized if they earn any casual money on top of that amount). Ironically, the federal government has offered pandemic relief of $2000/month to Canadians who have lost their jobs or who cannot work. Some of these are students who live with their parents (and don’t pay rent) who happened to earn $5000 last year doing part time or itinerant work. Those receiving disability pensions are ineligible to apply for this emergency money. Two thousand dollars per month is presumed to be the base sum that a lone individual requires in this country. Disabled people are expected to live on almost half the amount that regular Canadians are expected to subsist on.

Thirty years out, neither the Americans with Disabilities Act, nor the Accessibility for Ontarians with Disabilities Act which was inspired by it, have addressed the underlying prejudices that exist throughout our culture. Disabled people point to the exigencies of the pandemic to illustrate the habitual bias they experience. Even well-intentioned ‘liberal’ laws such as medical assistance in dying (MAID) mask fundamental problems in how we view disability. MAID itself relies on the medical status of an individual but it never takes into account the physical, social, economic and intimate care circumstances of that individual. Someone with an intractable illness living in one of Canada’s long term care facilities may well have an intolerable existence, but someone with the same incurable condition who has access to good food, care, privacy, friends, stimulation and nature may well find their life to be quite tolerable. Social conditions matter.

This summer, in 2020, it is apparent that we socially fail disabled people. We continue to treat them as separate, unconsidered and unworthy entities. I hope, that as we adopt accommodations (that many disabled people pioneered) to make our own lives more livable during this pandemic, we truly need to realize that disabled people are intricately a part of our communities. They are us, they belong with us and we need to recognize that: DISABLED LIVES MATTER.

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The PROUD Project
The PROUD Project3 months ago
Good news. The deadline is 30 June 2021 – so hurry and apply!
The PROUD Project
The PROUD Project4 months ago
Join us for a preliminary view of our interview research 1:00-2:200 pm EDT Wednesday 2 June 2021. https://www.eventbrite.ca/e/webinar-what-does-disability-inclusion-bring-to-the-workplace-registration-152752178879
The PROUD Project
The PROUD Project4 months ago
https://calgaryherald.com/opinion/columnists/van-herk-time-for-a-reset-alberta-non-compliance-is-neither-heroic-resistance-nor-visionary I agree as a disabled person: “Non-compliance ultimately has little to do with freedom or personal responsibility but relies on a radical conception of personal autonomy at the expense of the weak and vulnerable.” A. van Herk re: the pandemic in Alberta