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The Faces, and Realities, of Those Living on Disability Assistance

Inspired by the ‘300 to Live’ campaign, artist Roz MacLean aimed to invigorate a ‘neglected conversation.’

Paloma Pacheco 18 Mar 2021TheTyee.ca

Paloma Pacheco is a Vancouver-based freelance writer and a graduate student at UBC’s school of journalism, writing and media.

Vancouver Island-based illustrator Roz MacLean didn’t plan to produce art out of a pandemic. But, like many creatives over the last year, a project found its way to her.

Since September, MacLean has been making colourful digital portraits of British Columbians who live on provincial disability assistance. Inspired by the advocacy group 300 to Live, a grassroots coalition of disabled and neurodivergent individuals formed near the beginning of the pandemic, her goal was to draw attention to the inadequacy of current assistance rates.

Her project, titled Insufficient: Disability Assistance is Not Enough, a collection of portraits and individual interviews, will be available in an ebook launching on her website today.

Last April, the NDP government announced a $300 top-up to provincial disability and income assistance to help recipients defray added costs related to the pandemic. Prior to the top-up, British Columbians on disability assistance could receive up to $1,183 per month — $375 of which was allotted for rent.

After overwhelmingly positive feedback from recipients testifying to the difference the extra $300 a month made in their lives, the COVID supplement was halved to $150 in January. On Tuesday, with the supplement set to expire at the end of March, the government announced a permanent rate increase of $175, making the new monthly amount for disability assistance $1,358.

Still, many feel this is not enough given the high costs of basic necessities such as food, rent and specialized medical care throughout the province.

MacLean has timed her ebook release to coincide with two events organized by 300 to Live that will take place this afternoon. Two marches are scheduled: one outside the parliament buildings in Victoria, and the other outside the Ministry of Social Development in downtown Vancouver. Advocates are calling for a more significant raise to assistance rates in advance of the NDP’s budget announcement next month.

“I really hope that there’s an impact,” said MacLean of the push for change. “I really, really hope that things get better.”

MacLean took a moment to speak with The Tyee about her project and raising awareness around disability issues. The interview has been edited for length and clarity.

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‘Even though I’m in subsidized housing, I still struggle a lot to afford my medications, because I take five medications and some of them are not covered. For instance, my migraine medication is seven tablets for $120, and those are not covered. And when I run out of those and I have a severe migraine my only option is to go to emergency, and because I don’t often have the $20 for the wheelchair taxi to get me to the hospital, and then another $20 to get home, I often don’t go when I really need to.’ — Theresa Maria

The Tyee: What inspired you to begin the project?

Roz MacLean: I actually started with a different idea: I’ve worked in education for a while and my first idea was originally around the experiences that people were having in the education system. Then, as things started to pile up with the pandemic, I tuned in to the 300 to Live campaign and the [COVID benefit] and the conversation that was happening around that. So I shifted my focus. It became clear to me that disability rates and poverty were more central and urgent.

My background as it relates to disability is that I’ve worked with the Vancouver School Board as a student support worker for about 11 years. For a good portion of that I was an intervener, which is someone who supports students who are deaf/blind. Before that I worked at Easter Seals camp and did some volunteering, and my brother also has an intellectual disability. It’s always just been a part of [my] day-to-day.

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‘When I graduated high school in 1982, I got placed in the long-term care home everyone had decided was best for me. The care home knew how much I was getting, so they made sure to charge me that exact amount in rent, leaving me with nothing. Each time the cheques went up a bit, residents were notified that the cost of rent is going up a bit too.’ — Matthew

What made you think that portraits would be a good fit?

I think it’s really natural for people to gravitate towards images of other people, and to be intrigued by them. I liked the idea of adding another layer to [the interviews], and I also liked the idea of having the portraits be informed by the tastes and preferences of the participants. So if they expressed that they had favourite colours or favourite things, I would try to incorporate those into the portraits, because I think it can be a way to express somebody’s personality but also someone’s energy — their vibrancy.

Many of my participants are represented with disabilities that are not immediately apparent. I think that’s just another part of it: We have no idea who’s dealing with what. The one in five number (of people in Canada with a disability) — I didn’t even know that number before this project. If you have the classic idea of someone who’s a wheelchair user, it’s kind of hard to imagine. But when you understand that so many people have disabilities that we’re not ever going to know about, and that they haven’t told us about... it’s a huge part of our population. And that’s kind of what makes it so weird that it’s such a neglected conversation.

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‘If able-bodied people are given $2,000/month because they lost their ability to work due to a medical reason (pandemic), disabled people also need $2,000/month because they lost their ability to work due to a medical reason (disability or chronic illness). The things that non-disabled people have made accessible in 2020 are what disabled people have been asking for for decades. I know things can be changed quickly. I would just like someone to care enough to change them.’ — Kristin


Could you tell me a bit more about the intention behind the book? Besides advocacy around assistance rates, is it also meant to educate non-disabled people about the experience of disability?

The immediate goal is to bring attention to the fact that disability assistance rates are too low and that we should make them higher. Let’s make the assistance rates at a level where people don’t need to be so deprived and suffering so severely.

And then I would say that another goal is that… there’s a real lack of focus and conversation in the non-disabled population about people with disabilities. I think it’s seen as a kind of special “different” space, and I’m even thinking about things like “special education” — I mean, it’s just education. And then I think of group homes, for example. There’s just a lot of things that are still separate. A lot of the experiences people have with disability — either due to their actual disabilities or due to living in poverty, and not being able to afford transit or being in social spaces — lead to segregation.

COVID restrictions easing up is a really good example. What about people who are immunocompromised and have complex conditions? They can’t take part in all these spaces that are now more open, because the risk level isn’t calculating them, so they’re just kind of forgotten and not considered.

I wanted [the book] to be a starting point for people to learn more. I wanted it to be an invitation to engage with thinkers and writers and advocates who are disabled and are experts on these things.

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‘It takes an awful amount of time to deal with bureaucracy here in Canada, regarding disability. The front desk staff are overall friendly but clearly overwhelmed by the workload. There must be a balance between the paperwork required from a disabled person and the checks and balances to review the veracity of the benefit claim application. The process can be painful and exhausting, and it can discourage potential applicants in need.’ — Chris

The book is being published at the one-year mark of the COVID-19 pandemic. I’m wondering if you have any thoughts about this year as a whole, and where disabled people have fit in to everything?

I’ll start with what I’ve picked up on disabled people saying on social media and in their interviews. What I’ve heard a couple times is people saying that the conditions of a pandemic — what everyone has been experiencing — are kind of parallel to how it can be all the time to live with a disability or chronic illness. It seems like there’s this sentiment like, OK, now the general population has a bit of a sense of what it’s like.

And as for anything changing, I sure hope so. And I think that has a lot to do with the advocacy efforts of campaigns like 300 to Live. I do wish that these issues got more media coverage, though. Like Bill C-7, I’m like, why am I only reading about this on Twitter? I wish it was like, “Of course these are voices that are going to be prominent in this conversation, because people with disabilities are so affected by everything that’s happening right now.” But I have to be hopeful that things will change. I think there’s a lot of momentum now. It feels like a moment where we’re re-evaluating and realizing that things could be better, and there’s some level of introspection happening.

But I think it can be hard to pay attention to things that are going on that don’t directly affect you. There’s a bit of engagement fatigue happening. Which is why I think it can be good to have these definite moments of punctuation where we can focus our energy. The NDP is releasing their new budget soon, so it’s like: Raise the rates. Do that thing.

I hope that collective energy pushes us along. I also hope that people have gotten some empathy, that clicking of, “OK, I was stuck at home and that sucked, and disabled people say that that’s what it’s like all the time.” I hope people are absorbing that idea.  [Tyee]

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