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?
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).
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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.
I was deeply concerned by the rhetoric heard both in and out of public session on Monday evening regarding the proposed Medway Valley conservation plan and felt it necessary to write in and provide some opinion and insight. As you can probably imagine, I was heartbroken by the repeated characterization that disabled people in this city are less deserving of using public spaces simply because we may access them in different ways or that we, as a people, are some sort of annoyance or burden because of our differing needs. Lurking behind many comments, made by both the public and some councillors, were some insidious implications that disabled people do not have the same value as the nondisabled, that we cannot possibly make an equitable world that is accessible for everyone or that the drive to become more accessible would inevitably lead to an ecological catastrophe. I feel there are some important clarifications and explanations missing from this debate and hope to fill some of those gaps with the following letter.
It is my interpretation of the Accessibility for Ontarians with Disabilities Act (AODA) and its subsequent accessibility standards that the municipality will eventually have an obligation to provide access to all municipal services or infrastructure otherwise being provided to people who are not currently disabled. The light in the darkness, so to speak, of the AODA is that disabled people have the same right to exist in our city as everyone else and it is our duty, both the public and the private sector, to begin tackling the structural, architectural and attitudinal barriers that functionally disable people. The AODA states it is the obligation of our world to change, not the duty of the disabled themselves to fit within a rigid normative hierarchy of ability. And best yet, the AODA states unequivocally that Ontario must be fully accessible by 2025.
From this interpretation, and based on Part 4 Section 80 of the O. Reg. 191/11: Integrated Accessibility Standards, the municipality has an obligation to “ensure that any recreational trails that they construct or redevelop, and that they intend to maintain” follow a set of technical requirements, including ensuring the surface of recreational trails are “firm and stable.” The Standard also states that the requirements do not apply to wilderness trails, backcountry trails and/or portage routes (O. Reg. 413/12, s. 6) and Section 80.15 outlines exemptions from compliance in instances where there may be “significant risk” to ecological integrity and at-risk species (as scheduled by the Endangered Species Act, 2007) in direct or indirect ways.
When looked at in the context of the Medway Valley plan, I think the critical point here to note is not necessarily the exemption on ecological grounds but the phrasing around creation and maintenance: I am of the opinion that the AODA does not require the creation of new pathways, especially into areas that are ostensibly not intended to be accessed by anyone, disabled or not, such as ecologically sensitive areas. Given the spirit of the AODA, to provide equitable access for disabled people, the requirement seems to indicate that if the city intends on creating new and/or maintaining existing pathways, places where members of the public are welcome, then there is an obligation to ensure pathway access for diverse means of ambulation.
Which brings us to my point: this discussion is not and should not be about the accessibility of pathways. Non-exempt recreational paths must be accessible going forward. Full stop. Building off comments from one city councillor on Monday, debating accessibility is actually “moot” because that debate already happened at Queen’s Park and now it is the law – we don’t really have a say in that anymore, unless we’re interested in going to court.
The actual choice here is about whether or not to provide publicly useable pathways. Not who will use them, what they should look like, but whether they should exist at all.
Which is where this screed began: do the disabled deserve to access a “natural gem” in the city? If the nondisabled are able and facilitated by the municipality to experience it, then yes, absolutely we do. Morally, ethically, and legally yes, we do.
Living with a physical disability has meant that I only get to explore a small portion of London. Many places Londoners take for granted, staples of the community, I have never visited because they are inaccessible. Most of my life opportunities have been decided not by the things I want to do or the places I want to go but based on the arbitrary patchwork of accessibility that has resulted in a minuscule list of places I can physically access. Before I go out with friends, before going shopping, before applying to university, before applying for a job, I have to call ahead and ask if the space is wheelchair accessible. All too commonly, the answer to this question is “I’m so sorry, but no.” Polite as the response may be, what I really hear and see is a city that intentionally or otherwise does not believe people like me are worth, fiscally or physically, the cost of accommodation. I hear and see that I do not belong. Frankly, at times on nights like Monday, I felt like I am not particularly wanted nor welcome.
I can access a mere fraction of the freedom enjoyed by the approximately 84% of Londoners who do not have a disability. This is, by and large, because of choices we’ve made about how to imagine our city and who we presume are its residents. Worse still, these are choices we regularly make without asking disabled people about how these decisions will continue to marginalize their experiences and prevent full citizenship. Ultimately, we are not people with disabilities, we are people disabled by system of ableism that prefers to assume disabled people either have everything they need already (we don’t) or that they simply do not exist (we do…and our numbers are growing).
And the continued vacillating on tackling the systemic and attitudinal barriers faced by disabled Londoners validates that belief. Every “we can’t afford it” or “now is not the right time” or “this is not the right place” makes us all complicit in this oppression based on bodily formation.
London may or may not need city-provided access to Medway Valley. That is ultimately something you will need to decide on Tuesday. But if you do not believe disabled people “belong” there, then I implore you ask where do we, disabled people, belong? If Medway Valley is one of the few spaces that we cannot accommodate, and you genuinely agree that the disabled do in fact belong in London, then I urge you to make up for this one ecological limitation by committing to resolving some of the countless other barriers that we can remove – we just have to stop finding excuses not to.
Thank you for your time and consideration,
Jeff Preston, PhD
Assistant Professor, Disability Studies
King’s University College @ The University of Western Ontario
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.
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.
“Police investigate on Jan. 16 after a police cruiser and a woman in a wheelchair collided at Dundas and Adelaide streets.” – LFPress
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.
At 15cm of snowfall, society crumbles and it’s everyone for themselves.
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.
Me in my wheelchair, pictured at night.
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.
To celebrate National Accessibility Week, I recently sent out the following letter to all London candidates of the upcoming provincial election to determine their stance on the Accessibility for Ontarians with Disabilities Act (AODA). I will be posting their responses as they come in if you’re interested to know their stance.
To celebrate the 1-year anniversary of Cripz: A Webcomic going online, we’re asking everyone to grab their caution tape and shut down as many stairways as possible.
What is Stairbombing?
Stairbombing was invented to help people understand (and empathize) with why accessibility is important, by “closing down” stairways with caution tape and a snarky “Out of Service” sign commenting on how annoying it must be to not be able to access a place they really want to go.
Why are we stairbombing?
Because, quite frankly, we’re tired of not being able to go anywhere! One of the biggest challenges for someone with a physical disability is the lack of accessible public spaces. From restaurants to schools, London is woefully inaccessible. The result is that people with disabilities are one of the most marginalized populations in our community simply because they can’t go to the same places as everyone else.
Invite all of your friends to the event and give us a few shout-outs on your social media (facebook, twitter, friendster, icq, etc)!
Write a blog about the event and why you feel accessibility is important.
Form a team of friends, bring a camera and meet us at the band shell in Victoria Park at 7pm on the 30th! We’ll provide you with all the supplies you need.
Head out into that big bold world and shut down as many stairs as possible!
If we all work together, we can shut down a critical mass of stairs and show the people of London just how inaccessible this city is!
