[Music plays to start the episode]

Elizabeth (Host):

Hi Everyone. Welcome to the Well Endowed Podcast. I’m Elizabeth Bonkink.

Andrew (host):

And I’m Andrew Paul. This podcast is...

brought to you by Edmonton Community Foundation. And we are a proud affiliate member of the Alberta Podcast Network.

Elizabeth:

Edmonton is full of generous donors who have created Endowment funds at ECF. These funds are carefully stewarded to generate money that supports charities in Edmonton and beyond.

Andrew:

On this podcast, we share stories about how these funds help strengthen our community. Because, it’s good to be well endowed.

Elizabeth:

On this episode, we learn about the Radical Inclusion Program created by John Humphrey Centre for Peace and Human Rights. And about why disability rights aren’t privileges.

Andrew:

Last year, ECF was able to provide funding for the Radical Inclusion program, which helped them create a report on the Status of Rights of People Living with Disability in Alberta.

Elizabeth:

This report was released in August of 2021. And highlighted five 5 areas of focus: Financial Barriers, Employment and Careers, Housing, Healthcare and Justice and Law Enforcement.

Andrew:

To quote from the report: “The challenge ahead is to deepen the understanding of ableism and to break down the barriers to accessing rights in a dignified manner”. End quote.

Elizabeth:

To help us begin, our correspondent, Karli Drew, spoke with 3 guests: Roxanne Ulanicki, the lead facilitator of the Radical Inclusion report; Lisa Bennett one of the report contributors; and with local activist, Ell. Let’s take a listen.

[Music plays to introduce the story]

Karli (narrator):

Ramps. Captions. Accessible parking spaces and pedestrian signals.

[brief clip of wind, vehicles driving by, and an accessible pedestrian signal]

Basic forms of accessibility are scattered all around our community. We’re surrounded by subtle reminders of the existence of Disabled people—after all, disability isn’t uncommon, by any stretch of the imagination.

Yet the human rights of Albertans with disabilities continue to be violated and pushed aside despite our growing presence in society. As an example: standardized, enforced, & adequate accessibility still doesn’t exist in Alberta. Or even Canada, for that matter. In other words, the baseline for Canadians with disabilities is below the “bare minimum.” Accessibility simply isn’t guaranteed for us in any environment.

Throughout this episode, we’ll be using “accessibility” as a broad term in the context of Disabled people—whether it’s structural, systemic, social, or otherwise. But I want to note accessibility applies to non-disabled people, too. The difference is that accessibility for non-disabled people is more often viewed as a universal expectation, like having chairs in waiting rooms, while accessibility for Disabled people is typically thought of as optional.

I recently had the privilege of speaking with members of the Radical Inclusion team about how their disability-led local group is actively working to improve the lives of Disabled Edmontonians.

Lisa (guest):

My name is Lisa Bennett. I have been with Radical Inclusion for the past year. I’ve been involved with numerous different parts of the disability community. I’m pretty passionate about making a difference in the disability community.

Roxanne (guest):

My name is Roxanne Ulanicki. I’m an advocate here in Edmonton, and I’ve been doing this kind of work since I took a medical retirement from the federal government. I decided I would use my pension as a paycheck and continue trying to advocate to make life better, hopefully, for the next generation of people with disabilities.

Karli:

Their team hopes a collective effort to make a lasting difference for the disability community.

Roxanne:

Radical Inclusion is sort of about coming together—a bunch of people with disabilities—to look for thoughtful solutions that could be easily implemented.

Karli:

In general, decisions affecting people with disabilities are made without our involvement or insight. This is true at all levels of government. But it’s not working—for anyone.

Roxanne:

Well, from my perspective, they should have been listening 30 years ago because that’s when, you know, the major cuts started happening to the programming for people with disabilities was in the ’90s. I feel like we’re long, long overdue for this conversation. Maybe some of the hardships that we’ve had to endure make us more motivated to push harder. We see others—either our people that we went to school with or our siblings—that are able to go and achieve things that we just can’t. And usually, it’s for really simple things that could be changed. But it’s hard to change the perspective of people in government, especially.

Karli:

Ironically, cutbacks have a tendency to increase government spending because of the resulting fallout. Counterproductive decisions like that are relatively common in the context of Disability rights. But progress for marginalized communities should always be linear. This could easily be achieved… by tapping into lived experience.

Lisa:

Lived experience is crucial. We need to be able to talk about the barriers we have faced in order to start a conversation on productive solutions.

Roxanne:

I think lived experience is the crucial part of the solution. Those of us that live with disabilities, we know the cheapest most efficient way to do everything. And I think the government could learn a lot from us if they would just consult with us in a meaningful way. Radical Inclusion is really trying to get a group of people together that can have really serious conversations. And so, it’s about gathering the right people that have the right skills to do that.

Karli:

So how can we apply that experience to make sure we’re moving forward as a society?

Roxanne:

We all have a role to play. But I’m more interested in really looking at government departments, looking into some of the programming that we have, and making thoughtful recommendations. And what I mean by that is really doing our research about the programs and figuring out, “Okay. How can we make some subtle changes that will really improve our lives?” But it also—you know… Governments are slow-moving machines. And so, we really need to be thoughtful about how we approach them. So we’re really looking at creative ways that we can really start to affect some serious change in government. Part of that is knowing the stories. The experiences that we have shouldn’t be happening. People who are Deaf or hard of hearing have no access to things like, you know, a sign language interpreter.

I think because of the pandemic, we’re learning that closed captioning can be easily done, but we gotta take this so much farther. And yet the struggle here in Alberta is Alberta is very competitive and focused on money. But money doesn’t mean quality of life. And people with disabilities are the lowest income earners out of any group. That’s part of the reason why we don’t have a lot of power and voice. I think that it gets more and more complicated the more we ignore it because, as I said to you, I saw the negative changes starting in the ’90s. But here we are now in 2022 and it’s just gotten worse, and worse, and worse. So the longer we leave it, the harder it is gonna be to fix it.

Karli:

Most people with disabilities are never afforded the luxury of consciously choosing to be activists or advocates. And that, in and of itself, is part of the problem. See, we’ve all had to self-advocate in one way or another from the moment we existed while Disabled.

Roxanne:

It is very hard to advocate for yourself and it’s easier for somebody to make us feel like we don’t deserve whatever we’re asking for. But when you’re doing it on behalf of somebody else, you don’t have those same sort of feelings or doubts. It’s much easier.

None of us are intending to be political when we’re trying to get our basic needs met, but it often gets read that way. I think it takes a combination of things, you know? And the reason I get so excited about Radical Inclusion is we are inclusive of all people with disabilities, and we want people with different disabilities involved. I think our problem-solving could be fantastic if we used the lived experience of a wide range of people with disabilities.

Karli:

Canada is one of many countries who have signed the UN’s Convention on the Rights of Persons with Disabilities. If you’ve never heard of it, you’re not alone. It’s not often mentioned outside of the disability community. In short, it’s an international treaty that identifies the rights of people with disabilities and outlines how to “promote, protect and ensure those rights.”

The UN periodically assesses countries who have agreed to the treaty and… well… Canada has gotten a failing grade on more than one occasion. Part of the issue is that Disability rights in Canada rely on good faith, which—when you really think about it—suggests they’re privileges and not rights at all. What’s more, our current system is fragmented and patchwork-based. We need to start taking a more holistic approach.

Radical Inclusion recently published their own report on Canada’s latest state with the treaty. They covered 5 specific areas: housing, healthcare, financial barriers, employment & careers, and justice & law enforcement.

Their findings were illuminating, to say the least. In the document, they addressed issues faced by Albertans with disabilities and provided actionable ways for our government to solve them.

It’s worth mentioning there were even more areas they didn’t have a chance to highlight in the report. One of them being transportation, as Roxanne and Lisa both brought up in our individual interviews.

While their report explores each area separately, in practice they’re all inextricably intertwined.

Roxanne:

They’re all interconnected in that, you know, we talk about employment, but it’s really hard to be employed when you don’t have somewhere to live. Or you live in an inaccessible house and have to crawl in and out. Or you have to wait for a caregiver or a family member to help you with that. So you’re dependent on other people’s schedules for very simple things. And that’s actually what started my whole journey: housing. I couldn’t find somewhere to live. I represented Canada in the 1988 Paralympics in Seoul Korea in wheelchair basketball. And I come back, and I can’t find anywhere to live. And so, it was devastating to me as a young person. My 20s were not a happy time because I couldn’t access basic things. You know, I was grateful to have a family that would help out where they could. Like, they made sure I had a vehicle to drive. But I needed a place to live that actually had some accessibility, right? So, I could rent an apartment that I could wheel into, but then I couldn’t use the kitchen and the bathroom… which are kind of important.

[laughter]

And then I’d have to argue with people about wheelchair parking because some person wouldn’t want to give up the wheelchair parking stall because it was really convenient when they brought their groceries home.

My first 20 years of living in the city, I moved 18 times because I kept just trying to find somewhere better, and there was always accessibility issues. Taking my garbage out… like… how do I get it all the way to the garbage disposal? And it was just ongoing, nonstop issues. But once I was in an environment where I felt supported, it was a lot easier for me to do advocacy work and advocate for others to have the same things.

Karli:

Accessible housing in our city—or rather, the lack of—is an all-too-often overlooked crisis for Albertans with disabilities, and the accompanying financial barriers exacerbate the problem.

Lisa:

Finding affordable apartments where my wheelchair can fit in every corner of it is almost near to impossible. If you are lucky enough to find something more fully accessible, it’s either too expensive, there’s no busing, or there’s long waiting lists.

Roxanne:

Basic accessibility really doesn’t exist. Every place that I have rented—up until I found an actual accessible unit—it was all an extreme challenge. In the disability world, we talk about spoon theory. We wake up every day and we have 10 spoonfuls of energy to use. And so, we end up wasting a lot of spoons just in our home environment because it’s not accessible. I may have worked a lot longer, you know, and stayed in my career a lot longer had I actually lived in an accessible environment and saved some of those spoons so I could go to work.

Karli:

So, at this point we’ve established financial barriers lead to housing barriers.

[increasingly exasperated and exaggerated tone for emphasis]

And housing barriers lead to employment barriers. And employment barriers lead to even more financial barriers.

[resumes normal, steady tone]

“Forced poverty” is a term regularly used in disability spaces. The cycle is difficult—if not impossible—to escape. It’s easy to understand why.

Lisa:

You have to jump through hoops and go to other places—such as nonprofits and AADL to get funding—not only to just replace medical equipment, but to repair the equipment. Even then, you’re still paying large amounts of money for the rest of it. And it’s a fight to get the appropriate equipment needed to live an independent life.

Karli:

We just can’t keep up. And for those of us unable to work because of our disabilities, AISH is insufficient. As many would agree, some aspects of the program are outright harmful.

For a brief moment in time, the amounts were at least tied to inflation, meaning it could automatically increase based on the current cost of living in Alberta. Alas, it was deindexed by our current government shortly after they took office.

 

I asked Roxanne what immediate changes could be made to the improve the program.

Roxanne:

At least make the program so that people are living above the poverty line rather than below. I mean, that we could do immediately. You know… make them more in line with the minimum wage.

I think all of these departments need disability and ableism training. Some of the attitudes within these departments are very, very destructive. I’ve had a lot of my peers tell me stories about how they were told that they don’t have a right to ask for these things because this is taxpayers’ dollars. I mean, I would rather my taxes go towards people with disabilities as opposed to oil companies.

Karli:

The endless extra costs of living with a disability, like having to pay out of pocket for essential medical supplies, are another one of the many reasons why our state of forced poverty continues.

Lisa:

The extra costs are a huge strain on the disability community. We are forced to get generic medications that may not work as well—or have bad side effects—because the generic is what’s medically covered. People are being forced to choose between one vital medical supply or the other because, in some instances, the government will only cover one item. That’s a danger to our health.

Karli:

Lisa touched on an important point in the previous clip. These barriers have dangerous, and sometimes, fatal consequences. All of these inequities have an enormous and ongoing impact on our physical and mental health. To make matters worse, healthcare discrimination isn’t uncommon for people with disabilities.

Lisa:

We’re frequently not taken seriously enough in regards to our own health. It can be a constant fight to get the answers or the help that we need. We’re seen as already broken or unfixable, so… broken bones are not even treated with the same urgency.

Karli:

At the beginning of this segment, I referenced the growing presence of Disabled people in society. The fact is we’re living longer than previous generations—for a number of reasons. This is a positive thing, but statistically, we’re still not living as long as our non-disabled counterparts. It’s time for the system to adapt so we have a fair chance to not only survive, but thrive.

Roxanne:

Our medical system often uses us as guinea pigs because they don’t know how to treat us. People with disabilities, especially children with disabilities, didn’t even live to adulthood 40 years ago. Well now we live to adulthood, we get university educated, and our systems are not keeping up. AADL, Alberta Aids to Daily Living, was designed for seniors. And yet many of us rely on that program, which is not designed for us and not designed for people with active lives. I mean… AADL, even in its mission statement, says it’s to provide stuff for you at home. They don’t really look at us as active people in our communities.

Karli:

Let’s be clear: some Disabled people are housebound. But a person can be housebound and still active in their community. The rise of the internet has made it easier than ever for us to stay connected from home, as non-disabled people also learned first-hand during the pandemic.

Lisa:

Radical Inclusion started while we were already in the pandemic. So we, as a group, don’t have any experience yet outside of the pandemic. But what this group has brought is a sense of community while we’ve had to social distance. We are a huge support to one another as we try to navigate finding solutions to the barriers that we, as people with disabilities, encounter in our day-to-day lives.

Karli:

And even though COVID continues to disproportionately harm people with disabilities, some aspects of accessibility were improved because of it.

Roxanne:

Well, we started planning for Radical Inclusion before there was a pandemic, but then we quickly had to switch modes and try a different way. So it’s been a real learning curve. Although, I’ll say—you know—as far as people with disabilities goes, it’s actually a more inclusive way of doing things. Because it’s online, this round of Radical Inclusion, we have people from all over the province where before it wouldn’t have worked that way because people would have to travel, you know? Or we have to design it to find an accessible location. The logistics of trying to get a bunch of people with disabilities together can be a real challenge. So that’s been a delightful thing about the pandemic.

Karli:

Things like grocery delivery and work-from-home accommodations became more widely available in the early stages of the pandemic—both of which Disabled people needed long before COVID hit. Unfortunately, some of those accessibility improvements are already being revoked. It’s important for us to consider the implications of rushing to rollback these changes. Instead, this could be used as an opportunity to keep the accessibility momentum going, and to rebuild in a way that’s inclusive of and for all Edmontonians.

You may have noticed there’s an area I haven’t elaborated on yet… law enforcement and the legal system. All of the barriers discussed so far have one thing in common: they put Disabled people at higher risks of experiencing abuse and other unsafe situations, particularly for those who are multiply marginalized. For this final topic, I’d like to introduce you to our last guest: local activist, Ell.

Ell:

Hi. My name is Ell. I am a queer Indigenous, chronically ill, and Disabled person—and my pronouns are they/them. So when it comes to access barriers for law enforcement and legal stuff, I’ve encountered a lot. I think the very first thing that’s really important to mention off the bat is… when you have an Indigenous last name, the cops don’t always show up, and I’ve encountered this multiple times. First thing you’re doing, as a multiply marginalized person, is saying, “Is the risk that comes with calling the police worth it?” You weigh the risks of your situation versus what the police bring because calling the police comes with risks.

And so, when you’ve weighed that option and you call the police—even calling 911—and they don’t show, it is so disheartening. You need that paper trail to get a lot of things accomplished, especially when you’re being abused. And let’s face it, there’s some scary statistics around mostly marginalized people being abused by other people. That’s the first barrier that I think is really important to mention.

And then after that, I find being an Autistic person… speaking to the police, speaking to lawyers, even speaking in front of a judge has been so difficult. Because, I think the first thing is, I don’t know how much detail to give. I don’t always know how much people are looking for unless they really specify it.

One time I had to speak in front of a judge and plead my case out for a protection order. If I didn’t have people with me that kind of helped me navigate that situation, and I wasn’t watching people going before me, I would have had no idea what to do. And I get into this kind of state—especially with people in authority—because they’re not giving me cues. They’re just too busy dissecting my body language and how much I talk… that I just talk and talk, and talk, and talk, and talk… because I don’t know what details they find important. I have a really hard time understanding what are, like, the small details and what are the large details. And then—they don’t often—they’ll just like let you talk just to see what happens. Or they’ll just cut you off, and you’re like, “I feel like there’s so much more I had to say.”

So I don’t ever feel like I’m giving a well-rounded answer to them, and instead of helping me navigate that, or giving me cues, they just dissect it. And it’s really disheartening.

And then the next barrier that I’ve come into is the fact that I don’t have the ability to give eye contact that they want. And eye contact “makes you a trustworthy person,” so immediately, I’m read as not trustworthy because eye contact makes me uncomfortable. Even when they know I’m Autistic, they’re like, “Well, you wouldn’t look me in the eye.”

And so, I really think in a perfect world, these people in law enforcement and legal systems would have training on how to navigate people with different disabilities. Because I know that Autistic people aren’t the only ones that are gonna struggle to maintain the level of eye contact, or the different body language, the different physical movements that they think you should be making. And we don’t always notice that we’re not doing it right, even when masking. And so, if they were able to have disability advocates in or had training with people with disabilities, I find that it would be a lot easier to navigate.

I accessed free legal services once, and I was put in a really bright room. It was really small. It was really, like, sensory jarring, and then there was a timer counting down: 15 minutes. I only had 15 minutes to talk to this lawyer and it was like, again, I did not know how to navigate that amount of time. I didn’t have the time to process what they were saying, either. They talked so fast in it that I couldn’t say, “Hey, I’m Disabled. Can you please slow down? Can you write this out for me?” Like, no. It was like, “Here’s your 15 minutes. Say what you need to say. Hope you absorb this. Hope you understand it. Okay, bye.” And that is all you get. So it was really, really difficult navigating those situations.

When it comes to disability advocacy and activism in Edmonton, I actually think that Edmonton lacks a lot of community for people who are multiply marginalized or marginalized in general. Compared to other places, we don’t have a big queer community. So I think that the activism in Edmonton is really necessary, and we need to be able to work together more. Not only for the fact that, like, people feel really alone here, but there’s a lot of changes that need to happen in Edmonton. There’s still so much ableism and barriers to access, and homophobia, and racism that it’s like… Edmonton is one scary place to live.

I think that having a community that’s stronger and can, like, support each other is really, really vital and super necessary, especially as the pandemic goes on and people feel more alone and isolated. And when so many of the loudest voices here have, unfortunately, been those people who really honestly wish us dead, that we are able to come together and have a voice at all against that because sometimes it feels like we’re not heard at all. And so, it’s very important in Edmonton, I think—for even just people’s mental health—to know that they aren’t just having to be isolated by themselves.

[music plays to end the story and return to hosts.]

Andrew (host):

Thanks very much to Karli Drew for bringing us that story. And thanks to Roxanne Ulanicki, Lisa Bennett and Ell for sharing their time and lived experience with us.

Elizabeth (host):

Yes thank you! It is a generous way to help us better understand the impact ableism has in our community. Listeners, if you’d like to read the full report on the Status of Rights of People Living with Disability in Alberta, head on over to our show notes for the link. It’s only 25 pages, and is worth a read.

Andrew:

We’ll also have links so you can find out more about the John Humphrey Centre for Peace and Human Rights, and to our Vital Topic: Gaps in our Social Safety Net which shares some statistics that demonstrate the struggle people in the disabled community face.

Elizabeth:

And while you’re checking out those links, be sure to check out ECF’s upcoming granting deadlines and student awards. You can also find the latest on our ECF blog.

Andrew:

Well, that brings us to the end of the show.

Elizabeth:

Thanks so much for sharing your time with us!

Andrwe:

Yes, thank you! We hope you enjoyed it. If you did, please share it out!

Elizabeth:

If you have time, please leave us a review on apple podcasts. Those reviews help new listeners find our show!

Andrew:

And find us on Facebook, where you can share your thoughts and see some pictures.

Elizabeth:

Thanks again for tuning in. We’ve been your hosts Elizabeth Bonkink.

Andrew:

And Andrew Paul.

Both: Until next time!

[music plays under the credits]