Carmen Papalia is tired of just being “accommodated.” The artist would prefer to use a marching band in lieu of his white cane, and he’s on a mission to demonstrate the ways in which Vancouver’s approach to accessibility lacks the necessary creativity.
“Of course I don’t expect the government to provide me with a marching band,” Papalia says after describing Mobility Device, his performance art piece in which said band assists a non-visual learner (a term he prefers over “blind” or “visually impaired”) on a walk through the city.
In fact, Papalia doesn’t expect much from of the government at all, or from Canada’s unprecedented accessibility act, Bill C-81, which carries the goal of achieving a barrier-free country by 2040. Since the act came into effect—in July 2019—British Columbia has begun to hold consultations around establishing provincial standards of the same kind. Meanwhile, Vancouver’s recent 10-year cultural plan is focused on equity, inclusion, accessibility and reconciliation in the arts sector. But even with these efforts, Papalia says the common accessibility practices of institutions fail to address the complex experiences of Canada’s largest minority group, many of whom are disabled by social, cultural and political conditions.
Many members of the disability community are distrustful of government intervention in the barriers they face.
Most accessibility standards focus on mobility—the universal symbol for disability is a person in a wheelchair, after all—rather than sensory or cognitive impairments, mental illness or chronic illness. The variety of lived experiences within the disability community can act as a barrier when it comes to representation, according to accessibility consultant Arnold Cheng. While the City of Vancouver has a volunteer-based Persons with Disabilities Advisory Committee, staff also consult with groups the Rick Hansen Foundation, the Blusson Spinal Cord Centre and SPARC BC. But still, many viewpoints are underrepresented.
“There’s no unified group when it comes to figuring out accessibility, which creates a fractured community when, for example, a group like Spinal Cord has more of a wheelchair-centred point of view,” says Cheng, who uses a wheelchair himself, because of an inflammatory condition that caused damage to his spinal cord. “We focus so much on wheelchairs that I think we’re kind of leaving other disabilities and lived experiences behind.”
Cheng adds that social factors are often overlooked by decision-makers outside the disability community. “For example, if a building qualifies as accessible but the entrance is through the back alley by the dumpsters, socially, that’s not accessible. But in terms of measurements, the numbers don’t care.”
That’s one of the reasons Papalia developed Open Access, a disability justice model that teaches organizations to unlearn ableist practices—to go above and beyond completing a checklist in order to gain a building certification. “My training is more about treating accessibility as an ongoing, long-term effort—a job that’s never over,” explains a jet-lagged Papalia. (He’s just returned from leading an Open Access training in Utrecht, Netherlands.) “I often think about how we should measure accessibility. What is your agency in a certain situation; what is your decision-making power? Can you define the terms within your own care? Is it a mutual exchange or sort of a one-way relationship?”
Cynthia Tran Vo
Many members of the disability community, says Papalia, are distrustful of government intervention in the barriers they face and avoid engaging with politicians. For example, up until the early 1970s, it was legal in B.C. to sexually sterilize mentally disabled patients if there was a perceived risk they could transmit “disability” to their children. “That’s still relatively recent, so setting a new accessibility standard should address those traumas in some way,” Papalia says.
The Downtown Eastside hosts several local organizations that work to help disabled people who are facing multiple barriers—groups that Papalia believes honour that history while fulfilling the neighbourhood’s heavy demand for support services. “Support is often multimodal, it requires more than just medical services. In that context, something like a gallery or even a social space where folks can go to meet and find some sort of a community is an important thing.”
Papalia works with Gallery Gachet, an artist-run centre that works to demystify issues around mental health and disability. Three years ago, Vancouver Coastal Health ceased funding the space, which had a $130,000 annual operating budget, when the authority decided to redirect its money toward institutionalized mental health programs. To stay open, the gallery had to move to a new location without studio space for artists, take on a conditional lease with BC Housing, and part with pieces of art and archives it didn’t have the resources to preserve.
“To think of the gallery almost shutting down when it’s such a value within the community, while the Vancouver Art Gallery gets earmarked for funding in this city every year without question, speaks to the inequality in the cultural sector,” says Papalia, who is advocating more investment into grassroots organizations that are already serving the needs of the disability community.
With so many ways to approach accessibility, we may need more than one act of legislation to successfully shift the culture. When asked what they would like to see from all levels of government, Papalia and Cheng both answered with a sense of defeat.
Cheng, at least, is cautiously optimistic about the conversations the new legislation may spark about ableism. “We have to think beyond what’s good for the disability community. We have to think about what’s good for the most part,” Cheng says, offering examples of parents with strollers, injured able-bodied people, or elderly people who are losing their sight and hearing.
Papalia is less convinced.
“There would have to be some sort of Truth and Reconciliation–like commission with new accessibility standards melded into it,” says Papalia. But given that all levels of government face a huge swath of issues needing their attention?
“That doesn’t seem likely.”