What do you do during a pandemic when your research is put on hold?

An image of a laptop keyboard with a coffee cup and books messily stacked beside it. There are a pair of reading glasses left open across the keyboard.

By Andrea Whiteley, Post-Doctoral Fellow for the PROUD Project

While the pandemic may have slowed down our research process somewhat, our research team stayed very busy over the last year.  Our team has created an accessible website, applied for and received a TechNation grant which supported the hiring of another researcher, secured private funding for several years, successfully applied for a federal knowledge mobilization grant, undertaken a bibliometric-style literature review, and reorganized our project to be carried out via video-conference.  We’ve attended some excellent conferences and events that have enhanced our professional development and shaped our understanding.  Finally, we’ve also been learning a great deal as we interview research participants about their employment experiences. 

Broadcastability:  A podcast series on experiences of disability and employment in Canada

The PROUD Team was recently awarded a Social Sciences and Humanities Research Council (SSHRC) grant to support the production of 8-10 podcasts to showcase the stories and experiences of our research participants.  The focus of the podcasts is to quite literally broadcast the abilities of people with disabilities.  We are partnering with Easter Seals of Canada to produce and promote the podcasts, and have also received funding support from the Centre for Global Disability Studies at the University of Toronto Scarborough.  Chloë and Andrea will act as the podcast hosts, and will welcome guest hosts for some of the programs.  We plan to hire and train a student and an Easter Seals volunteer to assist with the podcasts.  Stay tuned for the release of our first podcast over the next few months. 

Comprehensive literature review in the area of disability and employment

We are currently putting the final touches on two (or more) research articles resulting from a meta-analysis of scholarly publications. By doing this literature review we wanted to understand:

  • What kinds of research have been published over the past 10 years in this area
  • What researchers are carrying out similar projects to ours, and
  • What countries or institutions are involved in disability and employment research. 

We hired a graduate student studying for her Masters of Library and Information Science degree, Brenna Leslie, to assist with the literature review.  We have analysed over 1200 publications to get a sense of the research landscape for the study of disability and employment. 

Disability Advocacy and the COVID-19 Pandemic

One of the most important roles of an academic is to communicate research results not only to our knowledge communities but also to other stakeholders outside of academia that might benefit or be interested in our research.  When the pandemic first began Chloë and Andrea were motivated to enter the conversation around supporting vulnerable populations.  We published an opinion article in the University of Toronto Medical Journal entitled Vulnerability, Social triage and the Covid-19 Pandemic.  In this article we argue that if countries are concerned about managing pandemics better, governments need to secure and improve the lives of all vulnerable people, including those with disabilities, people of colour, immigrants, seniors, and low-income essential workers who have been disproportionately affected by the COVID-19 pandemic. Before the pandemic even started, these groups had been “triaged” away from care by their social and economic circumstances, where structural features of their lives made them more susceptible to the physical dangers of COVID-19. By adopting a macroscopic perspective that examines cultural biases, safety regulations, labour laws, building codes, urban-planning and socio-economic policies, our society will be better equipped to weather global pandemics or other crises in the future.

36th Annual Pacific Rim International Conference On Disability & Diversity

We attended this excellent on-line conference on disability and diversity and came away energized and excited by the sessions we attended.  Three outstanding sessions for me were:

  • Talk-Story session on Confronting Complacency:  Advancing Equity for All presented by Ashley Oolman and Alli Strong-Martin, Lifeworks Services
  • Skillshare session on You Can Do Employment Too by Erica Belois-Pacer and Kevin Dierks
  • Final Keynote presentation by Haben Girma

Haben Girma, the first deaf-blind graduate of Harvard Law School

An image of a young brown-skinned, Eritrean woman. She has a clear complexion, with large brown eyes . Her dark brown hair is tied back and her mouth is partially opened in a smile. She wears gold drop earrings and a burgundy v-neck top with short capped sleeves.

I learned so much at each of these sessions from the “Role of Federal Policy in Promoting Inclusive Employment in the US” (Belois-Pacer and Dierks); to the “Conceptual models of disability” (Oolman and Strong-Martin) to how “disability drives innovation.”  The quote of the conference, from Haben Girma’s really captivating presentation, was:

The dominant narrative is that disabled people are a burden on society.  There’s this myth that there’s two kinds of people:  dependent and independent.  That’s not true.  All of us are interdependent. My 11 year-old daughter loved this presentation as well and was so thrilled by the video of Haben surfing!  The only thing that would have made this conference even better was if we could have met everyone face to face at the conference in Hawaii!  We are planning to send in an abstract for next year’s conference whether or not we can travel there in person.  One of the wonderful outcomes of this pandemic has been how increased use of videoconferencing technologies has resulted in more accessibility for everyone, especially for people who find travel difficult due to personal, physical or financial circumstances. 

15 March 2021.

Photo credits: https://www.publicdomainpictures.net/en/view-image.php?image=151115&picture=computer-books; https://newscantell.blogspot.com/2017/04/haben-girma-first-deaf-and-blind.html

International Day for Disabled Persons – 3 Dec 2020

Today is the UN International Day of the Disabled Person.  I suspect that most people don’t know and don’t care. 

The problem with innumerable advocacy movements clamouring for attention and highlighting their specific cause with special months and days is that these calendar reminders have come to mean little to those outside their immediate cause.  A UN day of observation likely carries a bit more gravitas.  But I suspect that most of my friends and colleagues, even those who focus on social justice, remain unaware of the International Day of the Disabled Person.  Even if they were to notice that today acts to raise awareness of the presence of disabled individuals in our midst and of the particular forms of discrimination they face, few would be able to detail anything beyond a generalized support for ‘accessibility’ or ‘universal design.’  They would not be aware that almost ¼ the US population now identifies as disabled.  Elsewhere, the proportion of people who claim disability as an identity also steadily increases.  A friend, who teaches a class about disability politics, canvases his students at the beginning of each semester about their ties to disability.  He discovers every year that over half disclose that they themselves or, someone close to them, is disabled.  Given this prevalence, one would think that disability equality and rights would claim a greater profile than they do. 

Even as I carry out research on disability justice and, try to encourage conventional and scholarly awareness of systemic and systematic barriers that disabled people encounter across multiple jurisdictions and cultures, I wonder why humans tend to disavow the needs of the disabled.  I‘ve thought about this for many years and I’ve come to suspect that we turn away from images and ideas that make us feel vulnerable. The unfamiliar makes us uncomfortable but when the unfamiliar reminds us that we are morbid and mortal creatures, perhaps we reflexively turn away from it.  A physical, sensory, cognitive or emotional impairment suggests a deviation from the norm that insinuates that we might be potentially less capable than others.  Much like injured animals who mask their pain, humans may find it easier to overtly deny their own impairments and those of others.  And, many disabilities are “invisible” and thus simple to disown.  Afterall, who wants to be known for seeming incapacity?  

Perhaps it is instinctive? 

But, I’ve come to realize: so what, if it is instinctive.

Isn’t the point of the social endeavour of community is that we come together because we are better as a collective than we ever were alone?  By gathering as one society, creating institutions and rules to nurture and govern us, we’ve built remarkable forms: agriculture, cities, artwork, literature, laws . . . . the list is vast.  In coming together we’ve tamed some of our instinctive impulses and channeled our more basic energies into a world that does remarkable things – the latest of which is the worldwide effort to contain and then create vaccines against COVID19.  SARS COV2 is a naturally occurring, wild virus that has unleashed an existential threat.  While we’ve not vanquished it yet, there are glimmers that our collective action will tame its menace.

And so too, despite what might be instinct, we can collectively tame our reflexive uneasiness with disability.  We can confront that which makes us uncomfortable.  The very essence of the collective project of society is that it makes us better humans. . . . and turning our gaze towards our companions with impairments not only makes us better, conscious beings by embracing those whom we fear, it also allows our overall community to benefit from the sheer capacity and ingenuity of disabled individuals which currently lie largely dormant and untapped by the rest of humanity.

Let’s not only notice the UN International Day of the Disabled Person, but try to bring others into our fold of awareness and action, because we ALL can only be improved by this effort.

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.