Environment featured Inclusion

The disability filibuster and what accessibility is and is not

Painting by @eatonhamilton Is collage style and shows a person wearing a tux holding out hand to a wheelchair user in a beautiful light blue flowing gown. The painting has the words: Care to Dance.

Tick Tock

It was thirty seconds to midnight in the life of a bill becoming a law, when Catherine Frazee – in Nova Scotia – contacted me – in British Columbia – with what she called a rough idea. Frazee’s rough ideas are most people’s keynotes.

She laid out a plan for a round the clock zoom protest in the final hours leading up to the House vote on Bill C-7. We would call it the Disability Filibuster and it would consist of whatever disabled people wanted it to, whatever they showed up with.

See also: Media release: Disabled people are working around the clock to stop Bill C-7

We all knew that if it wasn’t a pandemic we would be putting our bodies on the line and potentially our hands into handcuffs but that wasn’t feasible because we are among the most at risk of dying if we were to contract the virus, the more so because we are front of the line for being denied a ventilator under triage protocols. But we could at least make sure the country knew there was no consensus of support for Bill C-7 as the Liberals were claiming.

I thought it was brilliant and more importantly necessary. The rest, as they say, is history, which it was going to be anyway. We just decided to make it more difficult to erase disabled people from this moment in history.

Bill C-7

Earlier this year the Canadian government passed Bill C-7, amending the Criminal Code of Canada to make it legal for certain agents of the state to cause the death of certain members of the public with their ‘consent.’ It expanded the already legalized MAiD – Medical Assistance in Dying – to those who were not dying but are disabled.

The fact that agents of the state are health care professionals and the members of the public are disabled people seemed to confuse many on the left about what constitutes autonomous consent and the circumstances necessary for it to truly exist.

The same people who can explain in detail the various circumstances that might lead someone to confess to a crime they did not commit – without the use of outright threats or physical violence – were unable to conceive a single scenario in which a disabled person might feel coerced to death inside the institutional setting of a hospital or ‘care’ facility.

The exact same people who map out the connecting path between poverty and prisons could not fathom a connection between poverty and conceding to a doctor’s advice to die rather than fight for the supports necessary to live – supports that you might not even know exist or are difficult if not impossible to access due to lack of funding and/or discrimination. They saw no potential for harm even when a person’s only access to any of these supports or to housing or funding is via the doctor who is suggesting they’d be better off dead.

Nor did these people consider the way disabled people are disproportionately represented in prisons where they may select the ‘choice’ between a lengthy sentence without the proper care and supports they need for their condition or a doctor giving them a lethal injection, to be anything other than progressive freedom.

They did not think of another creation of the Canadian carceral state, the horrors of which were long known and spoken about by disabled people but were only now hitting the news enough to register with non-disabled people – long term care, nursing homes and other congregate care settings.

It is unfortunately not surprising. The Canadian left progressives and social justice movements fail to demonstrate even the most minuscule solidarity with disabled people’s struggle. Instead they actively exclude us from their own activism and advocate against our interests far too often.

Disabled women were ignored in #MeToo activism despite being two to four times more likely (depending on disability) to be victims of sexual assault than non-disabled women and significantly higher rates of experiencing domestic violence.

But none of these things, let alone the fact that healthcare is designed for and around the needs of non-disabled people or that every province has chosen to keep disabled people trapped in a state of barely subsistence, below the poverty line and that most housing is not accessible or…mattered.

The vast majority of disabled people however were not confused by the existential threat Bill C-7 posed. Many worked together to try to prevent the passing of the bill, while well aware that the other side had a slick and sophisticated politically connected machine behind its blend of homespun ‘merciful to shoot a suffering animal’ common sense, appeals to ableists’ fears about becoming the very people they’ve spent their entire lives regarding as subhuman, branding of dignity as independent toileting and minimalist packaging of easily consumed utilitarian ethics.

“It doesn’t have to be this way”

Karen Ward is a historian, veteran harm reduction activist, advocate against prohibition and for safe supply, Vancouver downtown eastside resident, policy analyst and advisor to City of Vancouver. Ward reminds people regularly that ‘it doesn’t have to be this way’ as we head into the sixth year of the other public health crisis, a striking example of leadership and policy failure that has left thousands dead and countless others in mourning.

It is an important reminder that is more demanding than it is hopeful. It means we, and especially our political leaders, are making a choice to keep things as they are. It is an assertive entreaty that leaves claims of ignorance and helplessness shattered. When I was asked by the Broadbent Institute to write their submission about the proposed BC Accessibility legislation, I asked Ward to be part of it and we included harm reduction as a component of accessibility.  

The Disability Filibuster was/is a protest of  ‘it doesn’t have to be this way’ as well as a window into what another way could be.  

Our attempts at lobbying, public education and advocacy against Bill C-7 had tried to cross the moat between non-disabled people and disabled people. We live very different lives and our oppression is simultaneously visible and invisible. The evidence is our absence. But even when present we are rendered invisible in reality by the tropes and prejudice that fills and fuels the space we should occupy.

Our attempts to inject ourselves were hampered by the fact that even non-disabled people politically inclined to be supportive were distracted by their own fearful imaginings of themselves as us. The abled gaze objectifies and dehumanizes. The abled imagination is worse.

Hate and pity share the same origin story and the latter turns into the former when the reward points aren’t sufficient.

The Filibuster’s side benefit for those who decided to watch, was a glimpse into the world of crip culture and politics. We were in no way motivated by the abled gaze but if it looked it wasn’t going to have any influence or control. The Filibuster was crip space. In order for this to happen it had to be accessible; accessibility was necessary because we are. The Filibuster was necessary because we are.

Accessibility is “it doesn’t have to be this way” writ large. It says that what you think of as ‘natural’ or ‘the right way’ or, too often, ‘the only way’ is in fact a reflection and source of discrimination. Ableism built the cities. Ableism designed housing. Ableism decided how people learn and at what speed and in what setting. All the things that can’t be questioned not only can be questioned through the lens and analysis of accessibility, but they must be.

I hadn’t read his book yet at the time I was working on the submission but much of my own approach to accessibility is expressed in AJ Withers description of Radical Access,  “Access needs to be addressed collectively, across bodies, boundaries and borders. Radical access means acknowledging systemic barriers that exclude people, particularly certain kinds of people with certain kinds of minds and/or bodies, and working to ensure not only the presence of those who have been left out, but also their comfort, participation and leadership.”

I would add that accessibility also means acknowledging that the thing people are participating in or aspiring to be in leadership of, may also be something that is fundamentally inaccessible. For me accessibility is less about trying to renovate and more about creating. As I’ve said before, accessibility is what happens when dreamers pick up tools to carve justice.

In a similar way that neoliberals have laid claim on the words dignity, choice and autonomy and trademarked and branded them to align with their own political views and goals, accessibility was deprived of its fullness of meaning and transformative potential.

In a blog called, Stims, Stammers and Winks: A Catalogue of Awkward Gestures, Queer Writer defines what they call ableliberalism, a neologism that captures the “purely aesthetic nature of neoliberal commitments to accessibility and universal design.” The blogger argues that in the context of ableliberalism, accessibility’s “function is not actually to support disabled people but often either to make money from disabled people and…to make it look like the government is supporting disabled people or to normalize disabled people. Proof of this is everywhere. In many places one can see ramps that do not actually lead directly to the ground but leave space between the street and the sidewalk, effectively negating the actual use of a ramp for wheelchair users, but making it look to the unaware privileged abled citizen as if access has been achieved.”

The aesthetic of accessibility is unconcerned with carving justice and therefore ignores the barriers created by poverty, racism, colonialism, trauma, gender and other axes of oppression. It sets whiteness (a word with very particular meaning) as the ideal and assumes disability to be the only variation from ideal ‘norm’ identity – such a white, middle class man with a spinal cord injury, which just so happens to be most people’s image of disability.

A simple example of this is the placement of elevators at some of Vancouver’s older SkyTrain stations. Located away from the main public area and down dead end hallways this accessibility is not something I would want to use as a non-disabled or disabled woman.

Ableliberalism’s accessibility is often unpleasant to look at and difficult to use and only considers a very limited range of accessibility needs in the most minimal and unimaginative way – intentionally or otherwise designed to stick out and be noticed and noted. The effect of this is, in addition to the above noted appearance of providing accessibility, that it serves to reinforce non-disabled people’s perspective that accessibility is an intrusion into “their” space and that it is ugly and not meant to be there. Tolerance – which is not inclusion – leads to resentment. A quota is reached early and the gate is slammed shut.

‘Inclusion’ in a society with whiteness and abledness set as criteria for full humanness is both limited and conditional.

It is inclusion at the expense of what Robert McRuer calls “compulsory able-bodiedness which assumes that the “able-bodied identities, able-bodied perspectives are preferable and what we all, collectively, are aiming for.” Thus you hear of the disabled people who have successfully “overcome” or who “don’t allow their disability to define them.” 

David Mitchell with Sharon Snyder call the “tactic of integrating a privileged minority at the expense of the further abjection of the many” ablenationalism in The Biopolitics of Disability: Neoliberalism, Ablenationalism and Peripheral Embodiment: “Within neoliberalism’s inclusionism those occupying peripheral embodiments cannot be adequately accommodated even under the most liberal, fluid, and flexible diversity doctrine given the in-built limits of community infrastructure, reasonable tolerance, limited economic resources, and traditional historical expectations about who will share the rapidly dwindling commonwealth represented by public and private spaces.”

You may notice accessibility is so often located at places of wealth. In my city, Vancouver, BC, a former mayor is a wheelchair user. Access to and around City Hall is terrible. I asked a City Hall security guard about it one day when I was attending a meeting there. Surely the former mayor would have attended to the accessibility of the building and site while he was in office. The security guard laughed and explained that the mayor would never have used that entrance. His car was parked underground in his VIP spot and from there he took the elevator right up to his office. I always thought this was a good metaphor for accessibility. I heard the former mayor once on a radio show with our country’s most famous “inspirational” disabled person (rich, white, athletic supercrip) saying he didn’t think there were six restaurants in all of Vancouver that were not accessible. I am a wheelchair user and there are six restaurants within six blocks of where I live that I cannot get into. But I suspect the former mayor and I wouldn’t hang at the same spots. I live on disability benefits, which means I live in poverty. I don’t have a VIP parking spot. I don’t own a car. I used to skip a day or two of meals in order to pay for my transportation to volunteer on one of the City’s advisory councils. My poverty was a consequence of disability rates being frozen for a decade by the provincial government he was part of at the time. His accessibility and mine have precious little in common. Last year his reelection campaign centred around his campaign against the homeless (often/mostly disabled) people in his neighbourhood. Thankfully he lost. The defeat of this disabled man was actually more of a victory for inclusion than his reelection would have been.

Mitchell argues “a neoliberal bait-and-switch with disabled lives is at stake. The paradox of support for living in the community while simultaneously gutting the very social service systems needed to accomplish this kind of integration sits at the heart of the weakened strain of inclusionism extant in neoliberalism.”

The Lower Mainland is also home to the Rick Hansen Foundation and yet when I sat as a volunteer on the City’s Active Transportation Advisory Council I discovered 8,000 of 27,000 corners were not ramped and they were installing new curb cuts where none existed at a rate of 40 per year making the projected date of completion two centuries away. Curb cuts are among the most basic of accessibility and in this city of the country’s most famous disabled person they still either don’t exist or are installed improperly or not maintained. The City continues to install curb cuts that put wheelchair users outside of the crossing lines and into traffic. For comparison other smaller Canadian cities I contacted were installing up to 350 a year at the time.

Our cities are inaccessible, not just a building or a sidewalk, the very nature of how we conceive cities as places of ‘commerce’ and design them for ‘commuting’ to and from work. Our sidewalks are designed like car lanes only smaller. Room for one (slender non-disabled person with no pets, children or bags) going in one direction and room for one going in the other. There are precious few parking spots near sidewalk lanes though.

Who is the public in public space defines how we design public space. Containing and controlling the public use of public space extends the tentacles of exclusion further.

The majority of people killed by police are living with mental illness or are people who use drugs. Some are killed during wellness checks because of a mental health crisis. The victims are disproportionately Black and Indigenous. I have friends who live with mental illness. They are a danger to no one including themselves but they tell me they are often hesitant to go out in public for fear of behaving in a way that causes someone to call the police. One homeless man in my neighbourhood would give me the change he managed to accumulate and ask me to buy him food at the store. He didn’t want to go in because he was afraid of the people inside and how they would respond to him being “in their space.”

In his chapter about Toronto’s Queen West in Madness, Violence and Power,  Ben Losman analyzed the exclusion and inaccessibility created by gentrification. “In their interviews with the tenant population, Mazer and Rankin discovered that, “in relation to new commercial establishments, most rooming-house tenants experienced this subtle form of exclusion rooted in the dynamics of shaming.” 

Inaccessibility is fundamentally about causing, enforcing and providing justification for exclusion. Capitalism is a system of exclusion and ableism is the rebar it pours ‘reason’ on.

Marta Russell wrote in Capitalism and Disability, “exclusion was rationalized by Social Darwinists…Just as the inferior weren’t meant to survive in nature, they weren’t meant to survive in a competitive society. For nineteenth-century tycoons, Social Darwinism proved a marvelous rationale for leaving the surplus population to die in poverty.“  

I don’t care how dog-eared your Das Kapital is, you don’t understand capitalism if you don’t understand ableism and you don’t understand ableism if you don’t understand capitalism. And yet the two are so rarely discussed together.

Ableism is the never satisfied efficiency and productivity in capitalism and ready on standby ‘rational, scientific’ cover for exclusion and oppression. Period. Not just of disabled people.    

None of this is accidental, natural or rational. Fortunately it doesn’t have to be this way.

An injury (inaccessibility) to one is an injury (inaccessibility) to all!

“You wanna know how you’ll know if you’re doing disability justice? You’ll know you’re doing it because people will show up late, someone will vomit, someone will have a panic attack, and nothing will happen on time because the ramp is broken on the supposedly “accessible” building.”

Leah Lakshmi Piepzna-Samarasinha, Care Work

The Disability Filibuster was inspired by crip rage – that would soon become grief – but it was built by crip love, run with crip care and fueled by crip power.

It was intentional. The topics were serious and silly, the age range was young adult to elder, it was racially diverse, there was a range of disabilities represented – not just the usual suspects – it was educational, it was protest, it was pleasure, it was art, it was academic, it was music and memories and discussions. It was our space and nothing was polished or hidden from view.

Was it accessible? To a degree, yes. It had accessibility built in – which is different than saying it is accessible.

We had captions, ASL, people stopped and did periodic visual descriptions of themselves and their surroundings which turned out to be among my favourite moments even though I don’t require them for accessibility reasons. We were on crip time. If someone cancelled at the last minute no explanation was necessary – we all know of hundreds of possibilities without prying into someone’s privacy. Catherine moved her chair into different positions and her partner moved around behind her periodically doing whatever it was she was doing. Some people reclined. Some had echoes. None of it is remarkable to us but us being us in public is always remarkable.

But I will not call it accessible. You required a computer and Internet to participate or watch. That was the first barrier.

Hate is always a barrier to accessibility.

On the first day we were zoom bombed. We came back. There was a repeat. The images and sounds were disturbing and while we resolved to not stop we also knew harm had occurred and we needed to take measures to deserve the trust of our community to provide them with safety. We took a break and regrouped and determined that unfortunately we would have to sacrifice the closeness and solidarity we had felt in that virtual room together. We had wanted to make it possible for everyone to actively participate and chat together but we had to set it up as a webinar.

Sometimes there are competing accessibility needs between disabled people but in this case the competing need was within accessibility itself. Creating safe space is part of accessibility and in this case so was openness and ability to communicate without a sense of hierarchy of audience and presenter. We had to pick and we picked safety. It was one of the few tradeoffs we had to make.

We would not have moved forward with the Filibuster if we could not have arranged what we regard as basic accessibility. This was not something any of us even needed to articulate. It is just a given.

I have worked to create accessibility and inclusion at professional events in the past. I did a lot of the same things we did with the Filibuster – arrange for ASL, captions, ask speakers to give visual descriptions…At one professional event I toyed with the idea of calling my position an accessibility concierge because it better describes my approach than manager. For example, I called the hotel where disabled people were staying, the week before, day before and day of to make sure they had put unscented products and used scent-free detergent and cleaning supplies. I stocked the accessibility room with juice boxes, maxi pads, tampons, Depends, heating pads, cushions, blankets, chargers…I ran orange tape along edges of glass shelves, moved containers to the base of diagonal pillars, put toilet risers on some of the toilets, printed off larger font signage, similar in braille, wrote scripts for announcements to let people know they could move, stand, sit in chairs, recline on the floor however they wished…My goal was to create the conditions for the disabled people who were coming to have their needs predicted and planned for as much as possible- the way non-disabled people’s generally are (though capitalism doesn’t ever embrace the full humanity of non-disabled people either). My models were good hostesses and exceptional neighbours more than any philosophers or theorists I studied in university.

But I realized that while I was a concierge to disabled people I had to maintain a title of authority (though not one that is highly respected) with the non-disabled organizers. Though the title did little to offset the lack of value placed on accessibility and therefore me.

For this reason the most accessible thing about the Disability Filibuster for me was not fighting for and about accessibility.  There were frustrations and venting but just about usual things – like tech. It is remarkable how different those frustrations feel than arguments that fundamentally question your claim to be human. Tired is not stomped on. In fact I often felt replenished and tired at the same time.

At one point when I was communicating with someone on the Disability Filibuster team and when I finished I felt as if I must have missed something. The exchange was over far too quickly. It seemed incomplete. I realized what was missing were the hours of arguing about why something was necessary, why an inaccessible alternative wouldn’t work, why it didn’t matter how many people require it and why yes it was worth the cost and no it would not be understandable if that part of the event wasn’t accessible to everyone and on it goes.

Accessibility is/accessibility should be…

James I. Charlton said of accessibility “It is the likelihood of receiving the support, services, and devices necessary for a reasonable quality of life. It involves the totality of life for people with disabilities. Access is then a social construct, not simply an architectural one.”

Accessibility as a concept does not get the respect it deserves. Part of the reason for that is it was kettled by capitalism into products and brands. The economic or market model of disability has done at least as much damage as the medical and charity model ever has. Believing that the source and cause of your exclusion can be the source of your liberation is a hell of spin.

Capitalism is an intrinsically inaccessible system. Inaccessibility is as much a part of capitalism as profit. As we work to build accessibility within it so that we can exist, we must also not have illusions about the limitations of what we can achieve without being seen as a threat to the system itself. We must survive to fight and fight to survive but with the view that full accessibility is necessarily anti-capitalist.

Accessibility is about time and space and the humanity that fills it.

As a fat wheelchair user I am scorned by design for not being smaller. I am frequently told to be quieter. Giving me a shower took too long for hospital staff to bother.

If I don’t feel fully human and especially if I am made to feel less human then the place or space or thing or policy or system or attitude is not accessible to me. At a very core and fundamental level it means I fall outside your definition of human.

Accessibility is about the ability to be. Without explanation.

Accessibility is about belonging without earning. You belong because you are.

Accessibility is about connection to others, to life and to our own selves.

Accessibility is acceptance.

This is what we worked towards with the Disability Filibuster. To occupy space and time in ways that honoured our humanity individually and collectively.

Accessibility is many things but above all else it is precious and profound. It is necessarily a community and collective creation and to truly do it properly demands mutual communication and respect.

Leah Lakshmi Piepzna-Samarasinha has suggested accessibility is an act of love and the difference is tangible. “When disabled people get free, everyone gets free. More access makes everything more accessible for everybody. And once you’ve tasted that freedom space, it makes inaccessible spaces just seem very lacking that kind of life-saving, life-affirming love.”

The line between others and me is not as strong or solid as the one that binds us. Exclusion cannot be contained in one person or one moment. There are ripples. Accessibility also creates ripples and the more accessibility we create the more ripples it causes. We make waves and in the process we are not only making changes now but we are shaping the dreams and plans for the future.

I asked the disability community to share what they think accessibility is. I love my crip community and so I would just like to end this with their words and challenge the left to realize what they are missing. Please read the replies.

This article was first published on Gabrielle Peters’ blog. Republished with her kind permission.

See also: Catherine Frazee: ‘Bill C-7 begs the question, why us? Why only us?’

See also: 3 men talking and now I have 3 minutes, a poem by Gabrielle Peters

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