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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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Blog

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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Blog Media

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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Articles Speaking Engagements

The revolution of patient-centred care

Glasses and a stethoscope laying atop a heart monitor read out

This weekend I was invited to speak on a panel with Dr. Peter Blake at the London Health Sciences Centre (LHSC) Patient and Family Advisor Orientation and Networking Event at Victoria Hospital. The event was part of a larger effort by LHSC to develop ways for current and past patients to provide feedback on the services provided by the hospital, and also to inspire a culture change within the organization to place patients at the centre of the care team–also known as the patient-centred model of care.

The old way of doing things

An older man in a wheelchair looking sad being pushed by a disaffected nurse
I’m not sure what they were going for in this picture, but whatever it was I think we can all agree they NAILED IT

The field of Disability Studies has long picked at the ways the medical establishment subjects and invalidates the voices and experiences of disabled individuals. The prevailing wisdom has been that doctors are the gatekeepers of sacred medical knowledge and it is their duty to deliver the ‘good news’ to any who will listen. But this exchange has long been a top-down hierarchical relationship, in which the doctors “do science” to the body, identifying patient deficiencies (from a clinically safe distance) and plotting a path for their recovery. There is very little room within the medical model of disability for the patient themselves to exist — they are not living, breathing people so much as broken objects to be put back together. The result of this philosophy is that the patients have little say in what “health” means to them and what outcomes they seek from their care. Instead, they must conform to the logic of medical science and capitalist definitions of health and well-being.

The patient-centred care revolution

The medical model philosophy has come under attack in recent years with responses, like the social model of disability, attempting to inject personhood back into this knowledge exchange. The work of disability advocates, along with the rise of target audience centred marketing orientations and capitalist adaptations to the meritocracy of the Internet, has birthed a new way of imagining health care spaces that place the patient at the centre of care. A problem brewing in privatized health care systems of the United States is that patients who are not satisfied with the service they received at a hospital are less likely to return to said hospital in the future, which has obvious economic consequences for the institution. The solution to this problem comes in the form of patient-centred care: an effort to begin listening to the patients to determine if the services being provided align within the expectations and desires of the consumer and make changes accordingly.

At its core, patient-centred care believes that it is the patient, not the doctor, who should be the prime mover of any medical intervention. Patient-centred care believes patients should be aware of all options available to them (and the consequences/side effects of those decisions) so they can make an informed choice about their care and take an active role in defining health care outcomes. This is not an attempt to devalue the specialized knowledge medical practitioners have but rather restructure the power relations (and imbalances) that currently exists between doctors and patients. Medicine should not be something done to people by doctors but something achieved through a collaboration of doctors and patients.

Patient-centred care as resistance

A protest banner that reads "Disabled people fight back! Nothing about us without us"
Photo from the Disability News Service

Of course, at its core, patient-centred care is a public relations effort, aimed at placating the masses and discovering how best to ensure repeat shoppers. But within these neoliberal efforts to develop loyal customers lay the seeds of resistance. As patient voices are given more authority within the system, we slowly are given an opportunity to change and mutate the systems to conform to our desires as opposed to being forced to live within preexisting boundaries. Patient-centred care really can lead to a democratizing of the healthcare experience and injects a personhood that has been sorely lacking for so long.

Although not perfect and still in its infancy, patient-centred care resists neoliberal encroachments into the healthcare field because it demands (and facilitates) an opening up of dialogue around health and well-being that is decidedly people centred rather than profit or efficiency centred. Patient-centred care acknowledges that people have a right to dictate the terms of their care and sometimes perhaps the ‘best’ thing for them is not the most logical. And that’s okay, because we should have the right to decide what happens to our bodies. Patient-centred care reduces the tyranny of the medical profession by placing the decision of ‘value’ within the hands of the patient/consumer themselves — we get to decide what is important for us and not have it forced upon us. Patient-centred care is the embodiment of the rallying cry for disability rights — nothing about us without us.

Finally, patient-centred care is also resistive to neoliberal encroachment because it demands a slowing down of the delivery of medicine. Rather than a conveyor belt of patients pushed rapidly through the system to maximize numbers and efficiencies, patient-centred care demands doctors take time to interact with their patients, explaining in lay terms what is happening and defining individual options. This shifts medicine delivery from a factory-style carousel of diagnosis and treatment options detached from the patient themselves into an actual interaction between people. Medicine is not something we should be striving to deliver faster because it takes time to do it right. Time to think, time to assess, time to allow emotion to wane and logic to prevail. In a medical world driven by patients, we are forced to move away from inhumane and impersonal healthcare exchanges toward individualized experiences between doctor and patient — two equally important pieces in the equation of ‘health.’

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Blog Speaking Engagements

Listowel District Secondary School (April 2015)

"Listowel District Secondary School" written in blue on white/grey brick

Yesterday I had the opportunity to stop by Listowel District Secondary School and speak with the students about (dis)ability and labelling. I had an absolute blast with these awesome students, answering questions about life with a disability, inclusion and how not to propose to someone (it’s a long story). After school, I was invited to speak to the LDSS staff about my experience as a student with a disability, which lead to an interesting discussion about inclusion and empowering students with disabilities and their families.

A huge thank you goes out to Rachel Suffern and everyone on the CIC team for putting this presentation together and the teachers of LDSS for putting up with me. Thanks for everything and hope to see you all soon!

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Blog

Microsoft #Empowering Campaign

Black background with centered white text stating "Empowering us all". Microsoft 'window' logo in the top right corner

Earlier this afternoon I was contacted by Microsoft on Twitter who are rolling out an “#empowering” campaign, tied in with the tonight’s Superb Owl competition (annual gathering of ornithologists?), aimed at showing the ways Microsoft is changing the world through technology. One such commercial focuses on a young boy named Braylon O’Neill who, with the help of advanced prosthetics, is going to take over enslave the world. Here are some of my initial reactions to the campaign.

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Articles Blog Media

Are the disabled ‘afflicted’?

Facebook post featuring Sarah Palin and her son, Trig, with the text "A show topic yesterday in which Andrew innocuously referred to Sarah Palin's son, Trig, as "Down's Syndrome-afflicted" spurned several complaints alleging that calling Down's Syndrome an "affliction" is wrong. Do you agree, or is it splitting hairs?"

On January 6th, I was invited to speak on AM980’s Andrew Lawton Show about a recent Facebook post on the radio station’s fan page stating Trig, Sarah Palin’s son, was “Down Syndrome-afflicted.” Mr. Lawton and I had an engaging conversation around whether or not the term “afflicted” is offensive or if people are simply nitpicking for political correctness. For those who were not able to tune in to the broadcast, I’ve decided to write a short meandering blog post outlining why we need to stop referring to disabled people as being “afflicted.”

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Blog

The 19th Annual Jeff Preston Celebrity Golf Tournament

John Davidson and Jeff Preston preparing for the $25,000 cheque presentation

I remember not knowing quite how to feel the first year Port Elgin Rotary approached my family and asked if they could hold a charity golf tournament to honour the work I had done for the Muscular Dystrophy Association of Canada. Obviously I was absolutely humbled by the kind offer but it was a lot for a 12-year old to process at the time. Mostly, though, I was just excited to have the opportunity to continue raising funds to fight Muscular Dystrophy, driven by the recent loss of a dear friend who had Duchenne, Muscular Dystrophy.

After the second year, I remember driving home from the Saugeen Golf course and my mom warning me not get my hopes up because this tournament, named after me, would likely not continue for much longer. My mom knew better than most that these types of charitable events were huge undertakings and energy–and funds–were quick to wane.

Leafs sweater signed by Baun, Bower and Jeffrey
Hot item in this year’s life auction: A Maple Leaf’s Winter Classic sweater signed by Bobby Baun, Johnny Bower and Larry Jeffrey

Years later and I’m proud to say my mom was totally wrong.

Last week marked the 19th anniversary of the “Jeff Preston Celebrity Golf Tournament,” organized by Port Elgin Rotary and held at Saugeen Golf Course. To date, we have now raised over $1.2 million to support MD research across Canada, most recently directing funds to Jesse’s Journey. Once again, we had a full slate of golfers (41 teams in total) taking to the course on a beautiful Friday afternoon. It is truly amazing how many golfers have returned every year with most having attended the tournament for more than a decade. Because of their dedication, and the hard work of local Rotarians, we were once again able to donate $25,000 to MD Research and step that much closer to finding a cure.

I just wanted to take a few moments to publicly thank everyone who worked so hard this year to make the tournament a success once again. First and foremost, a huge thank you to Kevin Carter for chairing the organizing committee this year and keeping everything on track. Similarly, I would also like to thank Rob Dunlop for his work recruiting celebrities. Of course, I’d like to thank all of the dedicated Rotarians who work behind the scenes before the event and volunteer on the day of the event–without you, this could not be possible. I would also like to thank all of the celebrities for taking the time out of their busy schedules to join us, especially those who have returned year in, year out. Thank you again to Bruce Power and Unifor, our two title sponsors who have been with us since the beginning, along with the Power Workers Union who show up in force every year. Lastly, I would like to thank the golfers for giving their time and money to this cause that is so dear to me, my family and others within the MD community.

Thank you to everyone and I can’t wait to see you all next year at our 20th anniversary celebration!

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Blog Speaking Engagements

Accessibility Conference in Guelph, ON

Ca11yboration logo

Yesterday I had the honour of keynoting the Accessibility Conference, an annual conference geared toward advocates, activists, academics and professionals working in the field of accessibility held at the University of Guelph.

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