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Please Fund Paratransit

A surrealist AI generated art piece featuring people in wheelchairs lined up outside a double decker bus.

An open letter to London City Council as they continue budget deliberations…

Members of city council,

As I am sure you are being inundated with budget requests (demands?) I promise to keep this weekend missive brief. To put things in the simplest terms possible: while I fully understand the immense budget pressures you are currently facing it is vitally important that you fund the LTC’s request for increased Paratransit funding.

As a service, Paratransit has been underfunded for decades with ridership growth that often outstrips annual budgetary increases, leaving the LTC with an ever-smaller cup to bail out a ship that is rapidly taking on water. Over the past few years, both in the press and on the doorstep, you have heard the real-world impacts of these budget constraints—disabled Londoners are quite literally being excluded from daily life, medical appointments, and employment. Yes, there are some serious logistic and systemic limitations that constrains our system but, at the end of the day, chronic underfunding is a core driver of our current predicament. We are actively disabling Londoners by underfunding Paratransit and you have an opportunity to reverse this trend.

While I will not be able to join you tomorrow in person, I ask that throughout the public consultation process you take a moment to look upon the crowd and ask: How many disabled Londoners wanted to attend but were unable to get a ride? How many voices are missing from this conversation because of past decisions? Are disabled Londoners really equal citizens in this municipality if we cannot get rides to participate in our democratic processes?

Please enable Londoners by funding Paratransit.

Jeff Preston, PhD

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On mask mandates during COVID-19

An surgical mask with text "Don't let council throw London under the (covid) bus" superimposed

Dear Mayor Holder,

As is now customary, I hope you and yours have stayed safe and comfortable during the global predicament we currently find ourselves in. I haven’t seen you in quite some time, at least not in “real life”, as I have been in isolation since this all began. This is because, as you no doubt can guess, it is unlikely I would survive contact with COVID-19 because of muscular dystrophy.

I am writing today to ask for your help in keeping me safe.

While the obvious solution is for me to not leave the safety of my own home, every day this protective barrier is perforated by the arrival and close proximity of my support work team, upon whom my bodily function depends. Every day, every shift, these men and women put their own health at risk in an effort to keep me alive. But they also risk bringing the infection into my house should they contract the virus on their way here. Like living my own personal zombie film, every morning I awake to the macabre thought of: “Will this be the day I let the wrong one in? Is this the day one of my staff accidentally kills me?”

I am not alone in this dread—vulnerable Londoners of all ages, in every ward, have been left to man the barricades in isolation against an infectious flood that threatens to drown them. Perhaps note that while you are fortunate to own your own home, for many others who don’t the risks are even higher.

We’re scared. We’re frustrated. And at times, it can feel as though we are in this alone.

But there are ways you can help us fight for our lives. Transitioning services to contactless delivery and limiting indoor gatherings of people helps. Efforts through the Mayor’s Taskforce to connect individuals and agencies with PPE manufacturers and distributors helps. Mandating the use of masks on the LTC helps. Ensuring accessible and distanced access to sidewalks and foot paths helps. And over the next few days you will have the opportunity to help us in another way: by scaling up the percentage of Londoners regularly wearing masks in public.

There is a growing body of research indicating mask usage can help reduce the spread of the virus, especially when distancing cannot (or, by choice, will not) be achieved. Similarly, I have yet to see indication that widespread mask use has increased risk, noting of course proper vs improper use, washing/sanitation, reduction in social distancing due to perception of safety, etc. Mandating masks now can help to naturalize their use before they become urgently necessary in a second wave. As more people wear masks, more are likely to adopt the practice (we are herd animals, after all). Most important from my perspective is that increased mask use can protect those working hard to support the needs of those most susceptible to the virus—people like myself.

Weighing the pros and cons of mandating mask use, I am frankly shocked we are even having this debate: if wearing one might reduce spread and offers no overt risk, why wouldn’t we mandate public mask wearing for the duration of the pandemic?

Some may argue that mandating masks infringes on their personal freedom, to which I respond: the law already dictates you have to wear clothing outside…do you oppose this restriction as well? Facetiousness aside, there are tons and tons of examples of “restrictions” of personal liberty when the safety/lives of others are at risk. Such is the price we pay to live in the relative safety of society.

Some may argue it is impossible to enforce a mask mandate, to which I respond: we have countless bylaws, some with strict penalties, that are difficult to enforce but still serve a fundamental public good. See: building permits for decks or overnight residential parking in the winter. People “get away” with breaking these rules all the time, but by mandating them we increase potential compliance while also having a mechanism to deal with egregious noncompliance.

Some may argue that there are simply too many intricacies to craft an appropriate legislation. Or, that without direct and overt order from our public health unit, it is inappropriate to move forward. In my humble opinion, the ascendancy of “complications” preventing mask mandates (be they in execution or jurisdiction) act as convenient cover to avoid an uncomfortable truth in London, Ontario—we are far too comfortable deeming fundamental needs of disabled people to freely and safely participate as citizens (from accessing parks to accessing public transit) to be extraneous, superfluous, or just too darn arduous. We routinely throw up our hands and say “it’s just too hard” when confronted by the systemic, environmental and ideological barriers that trapped disabled Londoners within our homes long before COVID-19. What we, disabled Londoners, hear is “this doesn’t affect me and, therefore, is not important”. But, of course, you were not elected to represent the voice and needs of only some of your constituents—your mandate is to represent all citizens of London and, perhaps, to be especially cognizant of the voices that are routinely missed around the horseshoe.

Please do the (hard) work to develop a functional mask mandate. Please err on the side of caution. Please do whatever you can to save my life.

Jeff Preston
Ward 10 Resident

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Blog

Disabled Canadians finally getting COVID-19 relief?

A pile of Canadian coins of various denominations

Now in month 4 (3? 6? time has lost all meaning) of the COVID-19 pandemic, an increasingly rugged-looking Prime Minister Trudeau and the Liberals finally unveiled a strategy to support disabled Canadians with increased costs brought on by the pandemic. It was a long time coming, but certainly a welcome announcement.

Having now reflected on the announcement for a week, and partly inspired by the surprise defeat of the bill yesterday, I felt it was time to share some thoughts on the good, the bad and the ugly of the legislation and offer some suggestions on what comes next.

A one-time $600 cheque

For a Prime Minister who is incredibly focused on image and media management, it was quite odd to see Trudeau scream the quiet part and whispering the loud part during the announcement. I’m flabbergasted that the pull quote for this plan is a one-time $600 payout to those qualifying for the disability tax credit. $600?? One time?? What?????

While obviously helpful to cover the increased supply costs it speaks volumes that the federal government approximated disabled people only require a fraction of what those receive from CERB/CESB. Which, by the way, are monthly. Not one time.

Now in a perfect world where disabled people are ALSO receiving CERB/CESB, this added benefit would help to cover some of these additional costs. However, and it’s a pretty big however, there are tons of disabled people who do not qualify because they cannot work/go to school. For these people, the most vulnerable who are dependent on programs like ODSP, this one time payment doesn’t even get them to the low income cut-off for ONE MONTH let alone riding out all the other months of this pandemic.

Worse still, this benefit is tethered to being an existing recipient of the Disability Tax Credit with the benefits being distributed via the CRA on this year’s tax return. The problem here is there are a fair number of disabled people who are unaware/unregistered for the DTC or are currently trapped in the bureaucratic nightmare of “proving” their disability to qualify for the program. I’m assuming the government tied the relief to the DTC because they aren’t given access to enrollment names/numbers of provincial support programs and those programs have different definitions of “disability” from province-to-province which could further skew experiences of disability from coast-to-coast-to-coast. A solution to this problem could be to support qualifying Canadians to quickly get access to the DTC with reduced documentation requirements or, perhaps, relying on enrollment in income support programs to stand as “proof enough”.

While any help is good help, it is just really deflating to once again have disabled people drawn up as needing and being worth “less” than nondisabled Canadians. The support offered here pales in comparison to the levels of relief being offered to nondisabled populations which were fair easier to access.

Perhaps we should start renting out our bodies as pop up shops to just qualify for corporate rent relief?

Investing in accessibility

The part of this announcement that I find really interesting is the part that isn’t getting any headlines. Down a couple bullet points is a commitment to invest $15 million for community organizations to “improve workplace accessibility and access to jobs”. This is a great idea because it helps make Canada a more accessible place AND helps more disabled Canadians enter the workforce, something that is going to be REALLY important as we come out the other side of this. Always a great investment.

Stated a little less quietly is the 3rd plank of the plan, which involves $1.18 million for “5 projects” around access and tech. This is another good idea that should pay off down the line as access to cyber space is JUST as important as access to the meat space. I’m a liiiiiiittle lukewarm on the limited info about these projects though.

Projects include:

  • a “visor” for eye to text translation
  • accessible debit machines (so we can spend our $600?)
  • arm support to hold adaptive devices (???)

Without being too pessimistic there are already a fair number of big eye tracking projects (including Windows 10 native support for tobii) and there are tons and tons of mounts/arms already on the market to affix laptops, tablets and phones. Moreover these “tech” investments do little to resolve the broader issue of inaccessibility once online. A lack of WCAG 2.0 compliance and the reliance on user-generated alt-tags continues to make the online world inaccessible for some.

To even use alt-tags on Facebook, Instagram or Twitter, one has to dig through menus to ‘activate’ the feature. How many people reading this blog even know HOW to put alt tags on their social media images? Without these tags, images remain inaccessible to screen readers used by people with limited or no vision.

The other question I have here is whether or not this government investment means the resulting technologies will be low cost or free for disabled people in Canada? Or will all of the results of these investments be privately controlled and sold on the free market? As soon as you attach a “medical” or “special needs” label to a device the price SKYROCKETS. Case in point, voice-to-text software was/is regularly sold for hundreds of dollars. Everyone else get to enjoy Siri/Alexa/Cortanna for the cost of the device…and your privacy, I guess?

At the same time, I’d love to see more government grants in the innovation/tech world tethered to accessibility requirements. On the whole, a positive move.

Good effort, Trudeau & pals.

Revenge of the politics…

Yesterday opposition parties blocked the Liberal’s bill containing this disability benefit program, meaning (for now) it is not happening. Without getting into the weeds, all three opposition parties did not agree with the omnibus-style of the bill presented by Trudeau, featuring not just the disabled people relief plan but also legislation around tracking and punishing CERB fraudsters. The Bloc & NDP supported a move to pull out the disability benefit and deal with it on its own, however the Conservatives would not support that change and everything was sent back to the drawing board.

There’s politics being played on all sides here, yes, but at the end of the day the refusal of one political party, the Conservative Party of Canada, to discuss the legislation means that disabled Canadians must now wait even longer before seeing any sort of direct support from the federal government. The blame lays squarely at their doorstep for not being willing to even discuss the legislation.

An image of the Crave TV dinner spokesman who looks shockingly like Andrew Scheer
Andrew Scheer, leader (?) of the Conservative Party of Canada

Conservatives are arguing this was all just a sneaky ploy by the Liberals to move forward unpopular legislation under the cover of disability benefits but, honestly, I have to call malarkey on this defense. There was a clear pathway forward to deal with just the disability portion of the legislation but, instead of doing right by disabled Canadians, it was decided their issues with the Trudeau government trumped our need for support.

Interesting that Andrew Scheer wasn’t a willing to hold back CERB, CESB, or any of the other pieces of legislation that generated millions of dollars of relief for pretty much everyone by disabled Canadians.

Why is it always disability supports/programs that URGENTLY require caution and deliberation?

Why are the needs of others believed to be obvious, urgent and without question and ours are not?

Why are we always forced to the back of the line, only to be offered whatever scraps remain?

The answer is simple: ableism.

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Follow-up Questions re: COVID-19 and Disability in Canada

A graphic representation of COVID-19 virus

Question: A recommendation from the Coalition Working Group is to protect the income of persons with disabilities. Many Canadians are facing a loss of income due to COVID-19. In your opinion, what challenges do persons with disabilities face in accessing emergency funding programs, such as the CERB?

From my perspective, there are two general types of challenges disabled Canadians face when accessing emergency programs like CERB. The first cluster consists of physical barriers that prevent application. Programs that rely upon paper application pose a litany of barriers for those with visual impairments and risk exposure in the process of mailing in documentation. At the same time, research indicates that the digital divide disproportionately hits the disabled population , for financial, technical, and cognitive limitations, meaning fully online systems will leave many unable to apply for help. This barrier is compounded by employment programs and libraries, often used for public Internet access, being closed by emergency orders.

This speaks to a broader access challenge that has been exacerbated by COVID-19 and I would strongly recommend that this and future governments take seriously the need to support Internet access for urban and rural disabled people.

While I have not personally heard of people struggling to accessing CERB using adaptive devices, like screen readers or voice-to-text software, web platforms are notoriously difficult to navigate for people with visual impairments as far too many web developers are under-educated or fully unaware of WCAG accessibility guidelines. It is critical that any application programs adhere to the highest level of web accessibility standard (WCAG 2.1 level AAA).

The second cluster of barriers are driven by policy schisms between the federal government, provincial governments and non-governmental organizations providing support for disabled people. In Ontario, there was early confusion about how CERB would function with the Ontario Disability Support Program (ODSP). The Ford government has since determined the CERB will be treated as income, meaning any money received through CERB will be deducted from monthly income supports provided by the province. Although not ideal, because of the additional paperwork of reporting income from one government body to another, this has provided access to those eligible with increased funds without risking medical, dental and vision benefits offered by ODSP. Each province is tackling this question differently, which has added another (potentially unnecessary) layer of “work” for constituency offices to untangle the bureaucracy and additional stress for those waiting to find out whether or not they are risking long term supports by taking the short term benefit.

A bigger challenge is posed for those unable to work and do not have the requisite earnings to qualify for CERB, leaving them to continue subsisting on below-LICO monthly income supports in an environment where food, housing and medical supply costs continue to creep higher while in-home care needs increase. This means that our most vulnerable disabled Canadians, those who are wholly dependent on the government to survive, are being left behind in the short term and could lead to reduced in-home sanitation and food quality. I would strongly encourage the federal government to consider disability support payments as “income” to qualify these individuals for CERB.

Question: Do you think persons with disabilities are more likely to face permanent job losses post-pandemic than the general population? Please explain.

Although not a perfect analogy, looking at the 2008 financial crisis, the working disabled population is likely to be disproportionately hit by the coming economic recession in both the short- and long-term . After the 2008 recession, disability employment rates lagged well behind their nondisabled peers. While research suggested this is driven by a variety of factors, but one anecdotal reason is that disabled people are often hired into front-line, secretarial/desk duties that were deemed non-mission critical during the crisis and, when rehiring these positions, were pushed out by nondisabled applications with more experience and/or education. Worse still, the disabled population bore the brunt of austerity measures following the crisis – something that could happen once again without careful planning.

Given the physical workplace impacts now and in the foreseeable future, it stands to reason that we will see a similar trend in the wake of this recession. Further, in my anecdotal experience, employers regularly look at me as an “expensive” employee who will require costly adaptive devices and renovations to physical spaces to be employed—this anxiety will surely be amplified, leaving disabled employees on the outside looking in, as profit margins shrink and businesses tighten belts over the next few years to weather consumer uncertainty.

While COVID-19 poses a horrifying bodily threat in the here and now, I am deeply concerned that the long-term economic costs for the disabled population could decimate recent employment gains brought on by provincial legislative changes (like the AODA or BC Accessibility Act) and increased access to post-secondary education.

Question: The federal government transfers monies to the provinces and territories through the Canada Health Transfer (CHT) and the Canada Social Transfer (CST). In British Columbia, the CHT and CST in 2020-2021 is projected to be around $7.6 billion. Recommendation 7 from the Coalition Working Group asks that transfers be earmarked for the healthcare needs of persons with disabilities. Do you think that some of these pre-existing funds should be earmarked for the care of persons with disabilities? Do you think that a new envelope of funding or a new transfer program should be established explicitly for the care of persons with disabilities?

I think this recommendation by the Coalition is an interesting policy solution to limit the rationing of health care supplies and services – if provinces are required to dedicate specific chunks of transfer funds to disabled people specifically it limits provincial governments from restricting medical access to disabled people in times of crisis, as the Ford government in Ontario contemplated in the early days of the pandemic.

At the same time, I am inherently nervous about us versus them paradigms that enforce a hard line between “disabled” and “nondisabled” in part because this division is extremely hard to demarcate. Where would this line be drawn? How do we determine a health care user who is “disabled” versus one that is not? If COVID-19 causes long-term impairments (such as reduced lung function) are not all patients proto-disabled people?

For this reason, I am more supportive of human rights-based directives that outlaws eugenic rationing of care and services along lines of impairment and prognosis. I also would strongly support the establishment of programs to explicitly support disabled people, not just in times of crisis but in perpetuity. Disability is fundamentally experienced differently from coast to coast to coast, in large part because of limited resources, and anything the federal government can do to reduce these impairment effects the better for our country’s oft afterthought citizens.

Question: The Coalition Working Group’s third recommendation concerns the provision of PPE in long-term care homes and the screening of support staff and caregivers. In your opinion, would the provincial and territorial governments be best placed to act on such a recommendation? What do you think the role of the federal government should be in this regard?

This is an important (and, admittedly, a bit unwieldy) question that has some quick fixes and some long-term systemic changes that can be brought to bear. Perhaps a naïve patriot, I believe that Canada works best when all levels of government are working together and leveraging their strengths to solve different parts of the problem. Long Term Care facilities are complex structures guided by reems of policy and funding structures that vary from province-to-province and, as such, on-the-ground solutions are likely best led by provincial and territorial governments as they are simply better informed and better connected to the grassroots deployments of services and support.

At the same time, I think the federal government has a role to play in this problem. To start, the federal government could support provinces in developing best practices on screening and sanitation as new research emerges. Further, the federal government should continue efforts to procure and distribute vital PPE supplies, especially from international vendors, so that provinces are not left negotiating deals in competition with each other. Going forward, the federal government could also play a role in facilitating inter-province supply redistribution as different provinces may need higher volumes of supplies at different times as hot spots pop up periodically. Finally, the federal government could offer increased financial support to Canadian businesses temporarily retooling to produce PPE and sanitizer supplies to reduce dependency on unpredictable international supplies.

Question: The Coalition Working Group recommends establishing a Citizen’s Task Force that includes persons with disabilities, their families and allied organizations to inform a future disability-inclusive emergency response plan. Which body do you think this task force should report to, and how should such a task force interface with the federal government’s COVID-19 Disability Advisory Group (CDAG)? In your opinion, how would a Citizen’s Task Force inform government planning around emergency situations? Please explain.

While I was not a part of the Coalition Working Group, I would argue the formation of the CDAG is a short-term response to this recommendation and is beginning to open channels of communication between the federal government and the disabled population and disability stakeholders.

Post-pandemic, I would strongly support the evolution of CDAG into just this sort of task force to solidify disability-inclusive emergency response plans. The work of this group most logically falls under the purview of the Accessible Canada Act, leaving them to report to the Minister of Employment, Workforce Development and Disability Inclusion. Having said that, something this important and with an urgent need for provincial and territorial coordination could be argued to fit better under the purview of the Minister of Intergovernmental Affairs.

Question: In your opinion, what needs of persons with disabilities are not currently being met by the federal government? Please explain.

I think throughout my opening remarks, question response and within this document I have hit on some of the main priorities that should guide future government intervention, namely:

  • Push forward legislation to outlaw eugenic-inspired medical care and supply rationing in Canada
  • Increased support in accessing PPE, both from an affordability and acquisition perspective
  • Increased support for provincial health care systems to train and hire more support staff to reduce burn out and cross-contamination caused by PSWs working in multiple facilities
  • Increase financial support to those dependent on financial support programs who now struggle with increased care and supply costs
  • Develop financial supports for employers converting workplaces to be accessible, both in terms of physical alteration/construction and the purchase of adaptive devices

References

Cross, Merry. 2013. “Demonised, Impoverished and Now Forced into Isolation: The Fate of Disabled People under Austerity.” Disability & Society 28 (5): 719–23. https://doi.org/10.1080/09687599.2013.808087.

Dobransky, Kerry, and Eszter Hargittai. 2006. “The Disability Divide in Internet Access and Use.” Information, Communication & Society 9 (3): 313–34. https://doi.org/10.1080/13691180600751298.

Dodd, Steven. 2016. “Orientating Disability Studies to Disablist Austerity: Applying Fraser’s Insights.” Disability & Society 31 (2): 149–65. https://doi.org/10.1080/09687599.2016.1152952.

Duplaga, Mariusz. 2017. “Digital Divide among People with Disabilities: Analysis of Data from a Nationwide Study for Determinants of Internet Use and Activities Performed Online.” PLoS ONE 12 (6). https://doi.org/10.1371/journal.pone.0179825.

Ellcessor, Elizabeth. 2016. Restricted Access: Media, Disability, and the Politics of Participation. New York: NYU Press.

Garrido-Cumbrera, Marco, and Jorge Chacón-García. 2018. “Assessing the Impact of the 2008 Financial Crisis on the Labor Force, Employment, and Wages of Persons with Disabilities in Spain.” Journal of Disability Policy Studies 29 (3): 178–88. https://doi.org/10.1177/1044207318776437.

Goodley, Dan, Rebecca Lawthom, and Katherine Runswick-Cole. 2014. “Dis/Ability and Austerity: Beyond Work and Slow Death.” Disability & Society 29 (6): 980–84. https://doi.org/10.1080/09687599.2014.920125.

Hande, Mary Jean, and Christine Kelly. 2015. “Organizing Survival and Resistance in Austere Times: Shifting Disability Activism and Care Politics in Ontario, Canada.” Disability & Society 30 (7): 961–75. https://doi.org/10.1080/09687599.2015.1069731.

Hogarth, Terence, David Owen, Lynn Gambin, Chris Hasluck, Clare Lyonette, and Bernard Casey. 2009. “The Equality Impacts of the Current Recession.” 47. Equality and Human Rights Commission. Manchester: Warwick Institute for Employment Research.

“How to Meet WCAG Checklist.” 2019. Web Accessibility Initiative. October 4, 2019. https://www.w3.org/WAI/WCAG21/quickref/.
Jaeger, Paul T. 2004. Disability and the Internet: Confronting a Digital Divide. Boulder, Colo: Lynne Rienner Publishers.

Lindsay, Sally. 2010. “Disability and the Digital Divide: Gaps and Future Directions.” In Internet Issues: Blogging, the Digital Divide and Digital Libraries, 215–20.

Richards, James, and Kate Sang. 2019. “The Intersection of Disability and In-Work Poverty in an Advanced Industrial Nation: The Lived Experience of Multiple Disadvantage in a Post-Financial Crisis UK.” Economic and Industrial Democracy 40 (3): 636–59. https://doi.org/10.1177/0143831X17750474.

Smythe, Susan. 2015. “Where Is Canada’s Digital Inclusion Strategy?” Policy Note. July 23, 2015. https://www.policynote.ca/where-is-canadas-digital-inclusion-strategy/.

Turcotte, Martin. 2014. “Persons with Disabilities and Employment.” Stats Canada. December 3, 2014. https://www150.statcan.gc.ca/n1/pub/75-006-x/2014001/article/14115-eng.htm.

Williams, Cara. 2006. “Perspectives on Labour and Income – Disability in the Workplace.” Statistics Canada | Government of Canada. February 2006. https://www150.statcan.gc.ca/n1/pub/75-001-x/10206/9096-eng.htm.

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Articles Interventions

COVID-19 and Disability in Canada

Logo for the House of Commons

Last night I was asked to provide testimony on the Canadian government’s response to COVID-19. What follows are the speaking notes for my 10-minute opening statement to the House of Commons’ Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities (HUMA).

***

Good afternoon. To start, I would like to thank you for inviting me to provide comments and suggestions to this committee. A rally cry of the disability rights movement is the saying “Nothing about us without us” and consultations such as this are an important part of giving voice to a population historically spoken for rather than collaborated with.

My name is Jeff Preston and I am an Assistant Professor of Disability Studies at King’s University College at Western University in London, Ontario which is situated on the traditional lands of the Anishinaabek, Haudenosaunee, Lūnaapéewak and Attawandaron peoples.

My research and teaching practice at King’s seeks to excavate the cultural construction of disabled subjects and the ways popular culture and policy frameworks naturalize and reinforce sane, masculine, able-bodied supremacy.

I am also a person born with a physical impairment, a rare form of muscular dystrophy, who identifies proudly as a disabled person and have used an electric wheelchair since early childhood to make trouble in our world.

While the global COVID-19 pandemic has only recently been recognized as a world altering event in need of critical resource and policy redeployment, the virus has been on my mind since spreading beyond the borders of China. COVID-19 represents a uniquely exigent and existential threat for someone with muscular dystrophy, a disease that most often proves fatal due to pneumonia. With lungs that function at approximately 30%, it is unlikely that I would survive the virus. For this reason, I have been attempting to live in relative isolation since early March.

This attempt has proven uniquely challenging given the fact that I cannot physically live independently. Significantly reduced muscle mass means that I cannot provide for myself the day-to-day requirements of life, from eating to hygiene to repositioning at night to sleep. As such, I depend on others to support my daily care routines, tasks that are all delivered in close proximity. These PSWs, funding through the Self Directed Funding Program in Ontario, drift in and out of my orbit throughout the day. Many of my PSWs are reliant on public transport, as low wages can make personal vehicle ownership a luxury out of reach after covering the costs of living. At any moment my staff could accidentally bring the virus into my home and, because of PPE and sanitizer shortages, I have struggled to erect adequate barriers between me and the outside world. At times, infection seems like an inevitability.

Aside from the obvious physical and viral challenges of COVID-19, a nagging terror felt by myself and many of my friends with impairments revolves around whether or not care will be delivered should we become infected. As the primary fear of immediate death slowly burns away, I, like many others with “underlying medical conditions,” now fear the illness is not the only thing that may end our lives during this pandemic. Failing support systems may be just as deadly.

For someone like myself, the COVID-19 pandemic draws into focus the feeble, unwinding threads of socio-medical entanglements that struggled, in the best of times, to carry the weight of my disabled existence. Access to technicians able to service my adaptive equipment, from electric wheelchair to cough assist machine, becomes fraught in a world of social distancing. Early in the pandemic, the Assistive Devices Program in Ontario that funds these vital pieces of equipment was deemed non-essential and shuttered. If I catch the virus, workplace safety standards will require my staff to wear non-existent PPE to safely continue to deliver in-home care. If hospitalized, strict visitation restrictions mean I will lose access to my support team, becoming fully dependent on overworked nurses to provide the near 24/7 care that I cannot do for myself. As we heard several weeks ago in British Columbia, in the case of Ariis Knight, admission to hospital could mean a profound isolation—cut off not just from social contact but from the delivery of necessary hour-to-hour care that keeps me safe from a whole host of other comorbid threats to body and mind.

We are told, depending on our ability to flatten the curve, that hard decisions will need to be made about who can and cannot be saved. We may be asked to debate the “value” of a person and determine how productive or survivable one must be to merit receiving care. Those most at risk, disabled people and seniors, are now facing the cultural and legal pressures of necropolitics, asked to sacrifice ourselves for the benefit of those deemed more valuable. While we may have vilified the word “eugenics” after the 2nd World War, the ideology remains alive and well in Canada lurking under the auspices of “triage” and “the way of nature”.

In the here and now, what do disabled people in Canada urgently need? The answer to that question is absolutely massive, but here are a few recommendations derived from my own experiences and from those I am in contact with:

  • It is vitally important, in overt and unequivocal opposition to eugenic rationalities, that the Canadian government affirm the rights of disabled Canadians to fair and equal access to medical care and prohibit any value or quality-of-life based triaging of medical equipment or supplies. These types of policies are antithetical to the spirit of the open, diverse and caring country we have tried to build for the past century. And remember, without disabled Canadians the world would not have marathons of hope, a newscaster turned Lt Governor, or the Back to the Future trilogy.
    • We must also ensure that, once a vaccine is developed, distribution will be prioritized to those most in need (such as front-line workers and those with underlying conditions) and not purely based on “economic” or “productive” value
  • To ensure safe isolation for those needing in-home care, easy and affordable access to personal protective equipment is critical, including masks, gloves, and alcohol-based sanitation supplies.
    • We also need to consider funding support for increased care needs during this time, as some tasks that would otherwise be manageable independently may now require outside support.
  • We must validate in-home care staff and family care givers as vital members of an individual’s health care team, not a social visitor, who can provide important additional support in a time when our hospitals struggle with capacity issues.
  • We must secure our long-term care facilities to prevent the spread of the virus from unit-to-unit and from facility-to-facility. Supporting provincial efforts to care for the care givers is critical, including increasing PSW staffing numbers and providing regular paid time off, for recharging batteries or fighting off sickness. Scaling up the number of people working in these roles is critical. This also means a need to re-examine past practices of warehousing disabled people of all ages in medical facilities because of a lack of affordable accessible housing.
  • We need to ensure access for those seeking cognitive, intellectual and emotional therapies or services for pre-existing or newly developing mental illness or distress. While many of these services were deemed non-essential in the early days of the pandemic, with hospital resources being redeployed elsewhere, it is important to get these services back online quickly for those who depend on these programs.
  • We should reflect on the federal government’s determination that those out of work need $2000 per month, plus up to $1000 in earnings, to weather the storm. Meanwhile, programs like the Ontario Disability Support Program have long expected disabled people to subsist on a little over $1000 per month. Why is the cost to live for those with and without a disability presumed to be so different? What does this tell us about the fairness of these programs that are intended to provide a life for those unable to labour in a physically and attitudinally inaccessible neoliberal capitalist economy?

When I was young, I loved playing with LEGO. While I was not very good at the building part, I was great at tearing things apart. There’s something magical about those moments, not just the wanton destruction but what it signals—in the ruins of destroyed projects lay the building blocks of the next great edifice.

In confronting this existential threat, we must ask not just how we survive today but how to live with ourselves once it has passed. We must consider how our system has left us in the current quagmire. We should think of how to rebuild a country that does not require us to make such vital decisions amidst the wreckage left behind by this pandemic. COVID-19 means the world we knew several months ago is gone, but maybe it’s not all bad news.

What if a post-COVID Canada spent more time enabling people than disabling them? What if we reimagine our health care systems to be ones of plenty and not austerity? What if the flexible and digital work arrangements currently offered to nondisabled employees were extended permanently for employees with disabilities who have been asking for this type of access for years? What if we provided Canadians with the things they needed to thrive, regardless of their cognitive or physical ability?

I look forward to imagining some of these possibilities with all of you today. Thank you.

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What does the future hold for young disabled people?

A crystal ball reflecting a cityscape with blue skies in the background

I don’t think Andrew Pulrang could have posted this recent article on young people with disabilities at a better time, as I have recently been having similar thoughts on what the future holds for disabled children & youth and, much like Pulrang, I honestly feel really optimistic.

Yes, there are still huge barriers facing disabled people of all stripes and the pernicious effects of ableism are experienced in tangible and intangible ways on a daily basis. But if I consider how things were when I was a kid compared to how things are now, how can we not be excited? Provincial and National accessibility laws are (slowly) moving forward. Public and private spaces are becoming more accessible—sometimes even by choice and not because of a fear of punishment. More disabled students than ever before are entering post-secondary education, which points toward a promising future of employment and financial independence for these young ones.

But the reason I am MOST excited is not because of the work happening external to the disabled community, but the work happening within. When I was younger, I struggled to integrate within the disabled community of my peers. I was frustrated by the amount of self pity and self loathing. I was saddened by how many were already defeated, even with their lives just beginning. I didn’t understand why everyone just wanted to talk about their most recent surgery or the latest ‘miracle cure’ or the latest fundraising award they had won. Couldn’t we just talk about sports, music and dating like other teens?

Young disabled people I am meeting now are different than when I was young. Many of them have this sassy fire, brimming with self confidence in their right to be a part of this world. Many of them are organizing, online and offline, to fight for the things they and their peers need now and in the future. Some are even dreaming of (and achieving) adult lives that don’t (only) revolve around disability—choosing to just live life on their own terms and not “being” disabled all the time.

In my experience, young disabled people are dreaming a big, spectacular future of disability justice, inclusion and acceptance. Now the rest of us need to buckle up, join them and support them in making their vision come to fruition.

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Thinking about families and home care in Canada

Older person, wearing a hospital gown, using a walker to get out of bed

Of all the challenges facing Canada over the next two decades, one issue that regularly get pushed into the background is the increasing home care needs for aging loved ones.

As Angus Reid identifies in a recent report, a not insignificant number (a quarter of the +30 Canadian population) are currently delivering care to parents and in-laws as they age in place. That number will increase as Boomers continue moving through retirement and experience age-related impairments. As someone who struggles to hire new support workers every year, this is already a problem for those requiring in-home care – if we don’t have enough workers to fill the need now, a rapid growth in need will leave a LOT of people in precarious situations.

While many will frame this problem through a simplistic dichotomy of limited resources versus lazy millennials refusing to care for their elders, the causes and effects of in-home care shortages are far more complex. There are labour force issues, as people with important skills and competencies step out of the labour pool to care for relatives. There are burnout and mental health issues, as personal care is a tough job that not everyone is cut out to perform. And there are equity issues, as few families have the capacity to eliminate an income source from the household and stay afloat. Simply put, there isn’t a single sector of our social and economic spheres that remains untouched by in-home care.

We often complain about how the government spends our money and that our taxes are too high but shifting more resources into the health care sector is kind of a no-brainer. Increasing funding to quality in-home care is not just the right thing to do for citizens, morally, but it can also lead to economic benefits, including good paying jobs for those entering the field at various levels as well as freeing up others to bring their talents to other sectors of the labour market. It means thinking of health care as more than just doctors and nurses. And, of course, paying the non-doctors and nurses a fair, living wage.

To get out of the Great Depression, FDR’s New Deal created work opportunities, paid by the government, for those who were ready, willing and able. Perhaps it is time for a New Canadian Health Care Deal, aimed at providing viable, stable work both within and outside the hospital. Instead of factories that make “things”, maybe we should focus on creating jobs that enabled people. Instead of building what we hope people might want to buy, why not invest in services we know everyone will need?

To be honest, this might be the most Canadian solution yet to the challenges of globalization.

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Are ride share apps like Uber & Lyft really accessible?

Yellow cabs lined up on a NY street at night

I’ve always found it frustrating when we refer to ride-sharing services like Uber and Lyft as positive “disruptive” forces that are changing the way we think about transportation. Generally speaking, these are organizations that have exploited policy loopholes to subvert controls and regulation placed on the taxi industry, for better and/or worse, to give themselves a competitive advantage over those who play by the rules. But are they accessible for everyone? Apparently not, as seen all too clearly in a recent ABC story about a women in San Francisco who regularly has drivers cancel her rides because of her service dog.

Ride sharing programs may be a novel way to diversify our transportation marketplace, but relying on the virtue of untrained and unpoliced operators to “do right” by disabled customers is to set ourselves up for failure. We have seen this through failed charity model experiments throughout the US and are sure to continue seeing this behaviour in the ride share space. I have yet to see an accessible Uber vehicle in London, ON and the one time I used an accessible Uber in Toronto, I was picked up by an off-duty cab driver who was using their adapted cab to make a bit of extra money on the side.

The opportunity for drivers to “self select” out of accessibility (in official and unofficial ways) means we are unlikely to see adequate servicing of disabled riders through ride share programs and, if these services continue to impact the traditional taxi industry, could see reduced accessible transit options in the future if cab companies start going under.

The apps may be pretty snazzy. The prices might (seem) better. The service may be convenient. But in the end, is it any surprise that things like this happen when these companies were essentially founded on not follow the rules?

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A (hockey) blast from the past

Image of LFP article from 20 years ago

On the eve of the Gold Medal round between the Tigers and Jaguars (tomorrow night!! ahh!!!), how’s this for a #ThrowbackThursday? A little over 20 years ago (May 2, 1999), the London Free Press came to interview 15-year-old me about the London division of the CEWHA.

It is hard to quantify the role wheelchair hockey has played in my life. Back when this article was written, I would spend all week thinking about, planning for and looking forward to Friday night. The 2.5h drive from Port Elgin to London would always seem like an eternity, anxious/nervous to get on the court, while the drive home after would fly by…usually because I was fast asleep before passing Arva.

While I’ve had to take some years off here and there, wheelchair hockey is still a big part of my life – I now get to take groups of students from my class at King’s University College at Western University every year to experience this unique sport firsthand. Most of them are left in awe. Some of them leave terrified (the sport is a bit rougher than most expect).

More than just Canada’s game, wheelchair hockey was the first team sport that I could play competitively. It was also the first adapted sport that I could genuinely excel at based on my own skill and not because of the charity or pity of others. Until wheelchair hockey came about, there were no other team-based sports for people with my level of impairment. Too weak to play sledge or wheelchair basketball, I was left to solo sports where I missed out on that all-important ‘team bonding’ experience. I didn’t get that feeling of ‘belonging’ to a team until finding wheelchair hockey in grade 7. Wheelchair hockey was also the place where I would form life-long friendships with teammates of all ages, where I would learn from crip experts who had battled for disability rights before me and where, now, I get to carry on that crip mentorship tradition with young players just entering the league.

What hit me the hardest reading this old article, though, was the little reminder of how proud my parents were (are) of me and how much my family sacrificed to let me do the things I stubbornly wanted to do. Hours of driving through horrible weather, my parents ended their long work week month after month by driving me to London to play a game I love. They even managed to trick me into doing well in school through my love for the game. In part, I chose Western University for my undergraduate, in part, so I could be closer to wheelchair hockey.

I hope in my life I am able to love and care as radically, constantly, and fully as my parents do for my sister and me. My parents were, are and will always be the absolute best.

Back in May of 1999, I wonder if 15-year-old Jeff dedicated that double hat-trick to them? If he didn’t, 20 years later, I can confidently say that one and all the others were all for and because of you, Gail & Dave.

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Troubling ODSP changes on the way

Doug Ford campaign photo with "For the People" replaced with "For a Select Group of People"

Let me add my voice to the huge volume of Ontarians currently decrying today’s announced clawbacks/cancellations of social assistance programs (specifically Ontario Works and the Ontario Disability Support Program).

Continue reading “Troubling ODSP changes on the way”