Earlier this week, a stub of paper was slipped under my office door — it read “Your wheelchair is RAD”. I snickered, thought it was cute, and felt that whoever decided to share this with me (presumably a student) really “got” me and my sense of humour.
But this little slip of paper has some increased significance given the proximity its receipt has to today: International Day for People with Disabilities.
I don’t typically celebrate this day. It doesn’t feel like a holiday and it’s at least a bit disheartening that the largest minority in the world rarely even gets their day mentioned on the news, let alone receives any sort of pop culture acknowledgement.
Perhaps this day shouldn’t be just about “raising disability awareness” among those poor souls who haven’t joined our ranks yet. Maybe this should be about celebrating us, “the community,” and all the amazing, staggering and radical things we have done over the past year to push back against the ableism that lurks outside the comfortable confines of our accessible home spaces and work places.
Today, let’s not celebrate the rad chairs. Or the rad walkers or rad crutches. No need to fete rad prosthesis or rad hearing aids or any of the other rad devices Yes, they can be cool and yes they are liberating, but these are all just tools. They’re devices that some people use and others don’t feel they need.
We, the users, are the ones that make them radical.
We make them radical in the ways we use them to oppose a society that says we do not belong. We MAKE them rad because our very existence is a radical act of opposition against normative and eugenic ideologies that have long attempted to eliminate us. Adaptive devices are tools of resistance, yes, but we the users are the true radicals.
So I dedicate today to everyone who radicalizes their tools and uses their devices to confront the disabling aspects of our world. I dedicate today to those who demand a world where using a device doesn’t have to be a radical act. I dedicate today to the radicals that we lost in 2017 and to those who will continue to be radical into 2018.
And last but certainly not least, I dedicate today to all of those who taught me, trained me and inspired me to be a little radical too.
Just in time for the weekend, new changes were announced to the Ontario Disability Support Program (ODSP) that would eliminate some of the more punitive restrictions that, in my opinion, contributed to people getting stuck on the program. The biggest change comes in people’s ability to save money and assets while receiving ODSP support; whereas previously users could only save up to $5,000 before losing their monthly benefit, now individual users can save up to $40,000 in cash and/or assets without affecting their monthly stipend or medical benefits. Credit where credit is due — this is a really important change to ODSP. By allowing people to save/hold more assets, we’re enabling people to have a better standard of living. Not only that, this increases the chances of young people with disabilities being able to attend post secondary school, as most would need to save a lot more than $5,000 per year to afford the cost of university/college.
But much like the Registered Disability Savings Plan (RDSP), my main concern is that the benefits of these changes will not be felt by most on ODSP, disproportionately helping the small percentage of users that already benefit from familial, financial and social privilege. These changes (and RDSPs more generally) are great for people who have pre-existing access to money through family/friends, a group of people I suspect are already well positioned to manage. But just like how those scrapping by exclusively on the monthly stipend from ODSP do not have enough money to regularly make deposits into an RDSP account, these changes will not be greatly felt when a vast majority of one’s “earnings” are going to cover day-to-day expenses with very little left over to save. To put this into perspective, ODSP recipients are only entitled to a maximum of $1,050 per month; with most one bedroom apartments renting for over $700 in London, that only leaves $300 to cover transit, food, clothes and other needs.
As Ron Malis, a financial advisor for people with disabilities, aptly states in the article:
“You increase the size of the water barrel, but you do not allow people to open the tap much more than is currently possible today,” Malis said. “It makes things so complex for people who are struggling.”
Without significant increases in housing & spending allowance, I fear these changes are more of a PR stunt and many on ODSP will not see any tangible improvement in their quality of life.
So credit where credit is due, but there is still much to be done.
When it comes to development, I fully agree that we need to strike a balance between functional use and environmental protection. At the same time, a recent decision by city council in London to prioritize existing trees over accessibility needs is an interesting study in ableism and the privilege of the normate and their aesthetic preferences. Similar to the bylaw that restricted group home location, by not installing sidewalks we are yet again unintentionally disabling a vulnerable segment of our population, legislatively engineering barriers that make it harder for those with mobility challenges to live in certain (established) communities. Whether they meant it or not, this keeps the disabled out of certain areas in our city. Continue reading “Sidewalks, Trees and Legislating Barriers”
City Council in London is moving toward eliminating a problematic piece of legislation that attempts to limit the density of group homes designated for disabled people within specific neighbourhoods. The intent of this separation distance bylaw may not be as nefarious as it appears at first glance. It’s my understanding that the objective was to ensure that people with disabilities were not ghettoized into one or two specific locations in the city. The intent, then, was allegedly to better integrate disabled people into communities city wide. Whether that intent was achieved remains to be seen. Continue reading “Discriminatory Bylaws and Biopower”
From a young age, we are taught that the road is a dangerous place, whether you’re walking, biking or driving. We’re taught to always be vigilant, to use the sidewalks when possible and to only cross the road when it’s safe to do so. But the road can be exponentially more dangerous for wheelchair users, who tend to sit below the sight lines of drivers, often operate at atypical speeds, and at times have difficulty accessing the relative safety of the sidewalk and are forced to use the road instead. Of course, drivers should always be aware and share the road with other modes of conveyance (#BikeRights!!!), but that doesn’t always work out.
Typically, there’s not just one cause of a collision, but rather a confluence of danger factors that result in an accident. While I’m not privy to the details of the specific example in London, and cannot say for certain that any of these issues played a role in what happened, there is perhaps more to this story than at first blush, because there are two municipal and provincial legislative directives that contribute to the risk of roadway use by wheelchair users.
Making wheelchairs safer: A local solution…
To put it bluntly, it’s extremely difficult to navigate the city in the winter as a wheelchair user. At times, our sidewalks are covered with so much snow they are rendered unpassable, but this is a reality in most Canadian cities. The bigger issue, though, is not the sidewalks themselves but when snow plows pass by and fill the curb cut in with a wall of snow, leaving the sidewalk (and bus stops) inaccessible. Similarly, a lack of snow removal at bus stops make an already problematic transit system even less functional for wheelchair users, as snow drifts can make it impossible to drop the ramp.
This issue is, in part, a product of our bylaws. Currently, the city dispatches snow plows to the roads after 5cm of snow has fallen. However, the city does not dispatch sidewalk cleaning services until 8cm of snow has fallen, meaning if 7cm of snow falls they will clear the road but not send out a crew to clear the access to the curb cuts rendered inaccessible by the plowing. This may sound like a small gap, but it is not uncommon for sidewalk access to be blocked for days at a time in the winter. What’s more, bus stops can take up to 72 hours to clear in snowmageddon situations – stops that continue to be accessible to non-wheelchair users who can (albeit awkwardly) step over the drift.
The result? Wheelchair users who cannot afford cabs or cannot get a ride on Paratransit (which is most of us…) are left to do it ourselves by driving on the clearest path available, which is the road. The more wheelchairs we have driving on the road, the more likely someone is to get hit as we sit below typical driver sight lines and are moving much slower than the standard flow of traffic.
Simple solution #1 — ensure sidewalk entrances are cleared whenever the plows are dispatched, not just when sidewalks themselves are being cleared.
Making wheelchairs safer: A provincial solution…
One of the cited justifications for the accidental collision in London was that the wheelchair itself did not have any reflective tape and, therefore, the all-black wheelchair was difficult to see in the dark. While this is true, what is not explained is that this lack of visibility could be as a result of wheelchair funding programs in Ontario.
The first program, the Assistive Devices Program (ADP), currently does not fund lighting packages for electric or manual wheelchairs because they’re deemed a “luxury” and not a necessary safety feature. To be fair, these lighting kits can be quite expensive (the set for my wheelchair was quoted at $1,000 for front and rear LED lights) and that requires a conversation about the medical industrial complex and the ways “medical devices” are up-priced to gouge insurance and government systems.
At the same time, most aftermarket lighting options are independent of the wheelchair itself, such as the blinking red lights you can buy for bicycles, which can mean they are difficult to mount in a spot where the user can access it to turn it off and on and they rely on an additional power source to power them. The standard lighting package that could have come with my chair runs off the wheelchair’s existing power source and is accessed through the existing joystick, ensuring that users can access it when needed regardless of strength or flexibility. Because these kits are so expensive and they are not covered by ADP, most users forgo their addition and, as a result, are driving around without any lighting after dark.
The second program, the Central Equipment Pool (CEP) which is a subset of ADP, has a rule mandating that all electric wheelchairs purchased through this program must be black, regardless of whether or not alternate colour options are available without increasing the overall cost of the chair. For example, my current chair, a Permobil F3, comes six different bright colours but instead of being able to get a chair that reflects my personality and taste, I was required to get the solid black model. It’s been explained to me that the principle behind this decision is that all CEP chairs are intended to be returned to the government when a user is “done” with it so it can be recycled and they don’t want an issue arising where a user receives a hot pink wheelchair they may not want to use.
The problem is that this presumes two things about the CEP which might not actually be true in terms of wheelchairs. First, it presumes that CEP is actually recycling wheelchairs, which in my limited personal experience it is not, as I have never received a “used” wheelchair in my ~15 years on the program. Second, it presumes that wheelchairs are being returned to the program in a condition such that they could be sent out for someone else to use – my last chair went back to CEP without functional motors, batteries, or tires. From conversations with friends, this is not uncommon. It is so difficult going through the system to get approved for a new chair, and the client portion to purchase the chairs are so expensive, most people I know will keep their chair until it permanently and catastrophically stops working.
But even if the chairs were being fully recycled, would it not be worth spending the (surprisingly little) money to buy the colour alteration kit when sending to a new user with the payoff being that people are not driving around in all-black chairs on the streets in winter without any lights because they’re deemed an “upgrade” and not a necessity?
Simple solution #2 — fund lighting kits for wheelchairs and allow users to choose colours for their chairs that will increase visibility.
Something many with physical disabilities experience throughout their lives are curiosities (or outright accusations) of contagiousness. While people certainly haven’t stigmatized me in the ways other diseases are, viewed through the lens of threat or danger, there are still those lingering moments where my disability elicits a panic that what I “have” might be communicable. While medical science will tell you otherwise, I felt it was time to finally fess up and tell all of you the truth… Continue reading “I’m gonna disable your child”
As a disability & culture corespondent on Accessibility Media Inc, I was asked last week to come on their talk show, Live from Studio 5 (the segment begins at the 53:40 minute mark), to discuss my love for South Park and why I believe Timmy and Jimmy may just be the best (physically) disabled characters on television. While I’ve written about this before, I thought now would be a good time to revisit the series in this companion piece. Continue reading “Timmy and Jimmy are my squad goals”
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
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
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.’
This week is Bell Canada’s annual Let’s Talk event, which aims to get people talking about mental health. So, I decided to once again take some time this week to take a critical look at the initiative and the types of conversations it activates.
Aside from raising money for mental health research, Bell Let’s Talk is focused on reducing stigma, engaging with the ways mental illness is minimized and stigmatized. This year’s campaign features the #SickNotWeak hashtag campaign, generated by spokesperson Michael Landsberg, which aims to reconfigure the ways we look at people with mental health.
“The perception has been and still is that somehow we bring on our own mental illness through weakness of character. ‘I am sick not weak.’ If we believe that, the stigma will fade”
This hashtag is intended to be a battle cry for those with mental illness, equal parts embracing of distress and acknowledging the inner strength to persevere. This campaign is brought on by the stigma that ‘mental illness’ is not real, that people with depression are simply making it up, or that depressed people just aren’t trying hard enough. The campaign implies that having mental illness anointed as a real ‘sickness’ will legitimize the experiences of sufferers–not unlike the push to acknowledge addiction as a disease and not a choice. Once someone is diagnosed with a sickness, our society believes they deserve to receive care and support–they are not responsible for what is happening to them and, as such, we as a society have a duty to pay restitution.
It is perversely fitting that last week in the Toronto Star we saw the most recent incarnation of the belief that mental illness is somehow fake, with (horrifyingly…) a University of Toronto professor presenting the trendy meme that modern university students (and millennials more generally) are emotionally fragile and incapable of dealing with the harsh realities of the world. The author demands that students with mental illness come out with their labels or else not be accommodated on a university campus. Why is it that none of my professors required to know the specifics of my disability (diagnosis or anything else) yet I was offered accommodations, like extended exam time in quiet rooms that the author seems to argue against here, with almost no opposition? In part, I believe, it is because my physical disability is seen as a valid limitation, deserving of accommodation, whereas the mentally ill cannot prove their limitations are legitimate in the same way.
Despite the obvious benefits of the legitimizing power of sickness, a disability studies perspective, and my experiences with a physical disability, make me feel that perhaps this is not the right direction to go in the fight for mental health. Wheelchair users have long been seen as “really” disabled through our proximity to hospitals and sickness. On the one hand, being thought of as “sick” can render certain privileges, such as ease of access to charitable donations, being excused from work without penalty, and facing little resistance to accommodations when attending school. All of these benefits are things people with mental illness want/need and presumably once the mentally ill are anointed as ‘sick’ too, the grassy sun-kissed fields of accommodation will be open for them to frolic across as well. But clenched within the other hand lurks a dark reality. In the long term, the ‘sick role’ has only served to further subjugate the physically disabled, as they now fight the uphill battle of convincing the normals that they are not sick, contagious, or pitiful. In some ways, the benefits won by subjecting ourselves to the label of sickness can become that which ensnares us within a complicated social service system that does plenty to ensure we subsist but little to help us actually thrive.
Mental illness is real. It has always been real, it is not a new thing (even if we refused to talk about it before) and those who live with it struggle in ways that others do not. But I’m not so sure the path to mental health is paved in diagnosis and medicalization. Rather, I wonder if it is paved through collective compassion and empathy. The path to mental health is not paved by “proof” of suffering or consolidation under the medical model, but through accommodation and support being offered to all who struggle to function in a normative world. Regardless of the reason.
The pathway to mental health is in identifying and rectifying the ways our very world, physical and imagined, disable us. Yes, we are not all disabled the same, but disabled all the same we are.
When I was younger, I never thought I would be a tie person. I was not particularly fond of fashion, did not understand the appeal of brands, and was torn about the tuxedo I had to wear when on the MDAC telethons. Even if it made me look a bit like James Bond, the tuxedo wasn’t particularly comfortable. But now that I’ve gotten wiser older, I have started to embrace the tie. I like the way they look and find the process of tying them soothing and mindful. Mostly, though, I wear ties now because of what they symbolize. Continue reading “Status Symbols and the Tie”