Rights are usually a foregone conclusion in Canada, however, when it comes to people with disabilities, their rights are sometimes overlooked, or, at best, not really taken into consideration. Accessibility matters, inclusion matters, but making sure these things are enforced and protected takes an entire population to shift its collective outlook. That shift starts with people like Deborah Stienstra, author of About Canada: Disability Rights, Second Edition. Where are we right now, and how far do we have to go?
Evan Kelly 0:04
Welcome to DDA's Encouraging Abilities podcast. I'm your host again DDA communications manager Evan Kelly. Today's podcast we are joined by Deborah Stienstra. Miss Stienstra is a professor at the University of Guelph in Ontario, where she holds the Juris Loski chair in families and work and is the director of live work well Research Center and Professor rather of political science. Now for many years, she has also been working with the Canadian Research Institute for the Advancement of Women, and FEM North net, or the feminist northern network, which includes working with a diverse group of women and women who identify as having a disability. With having said all that, she's also the author of the recently published about Canada disability rights, the second edition, not, of course, to mention the first edition that was published in 2012. So thank you for taking the time today to talk to us about Canada and the current landscape of disability rights. So just, when I read all that, what do you think, that seems like an awfully large impressive body of work?
Deborah Stienstra 1:11
Okay, so thanks for that. But really, my work in disability comes from a very different place than sort of the academic and literature pieces that you're talking about. And it comes because I was married, my first husband, partner was a man named Patrick Kellerman, who lived with multiple sclerosis. And together, we had two children and raised two children. And we, I was somebody who worked in women's organizing and thinking and research. And he worked in the disability community, for Disabled Peoples' International in Winnipeg. And as his MS progressed, there were more and more barriers, challenges, creativities required to live the life we wanted to live together as a family. And I finally got to the point where I thought, How come I'm separating what I think and research about from what I live day to day as a family member with this, you know, of somebody with disabilities. And so we first started working together on some research, and then when he retired as a result of the escalation of his MS. I kept going in disability rights and research. And it's been a passion for me, and as my body has become more... as I've lived with more impairment, and had to adjust myself to living with disabilities. You know, it's, it's very personal. So yes, I do a lot of things. But really, this is deeply personal. As it is for many of us, I know.
Evan Kelly 3:17
Yeah, that's, you know, once I, when I started, you know, working at Developmental Disabilities Association here in Vancouver, about, I think I've been here for about three years now. Is, is just how many people in Canada actually identify with a disability. It's somewhere around 25%, I believe, and it's just, that's, that's a very large piece of our audience, or just a very large piece of the country. And that, and that's where, obviously, rights need to be more clearly defined and understood. Now, about Canada disability rights that was published in 2021. Now, since the first edition you've seen, have you seen substantial changes in government policy supports or even just some some of the prevailing attitudes in the public? I guess, in a nutshell, have the past 10 years accomplished anything.
Deborah Stienstra 4:04
I think in general, the reason I wanted to write a second edition is because some things had changed. And they were, in my view, substantive changes. So I'm not sure that we could see substantive changes in the number of people who live with poverty, or who are unemployed, or you know, who experienced violence in their lives. And we've seen all of that exacerbated through the COVID pandemic. But what we have seen, I think, is an increasing recognition and awareness of experiences, of the importance of including experiences of women, men and gender diverse people with disabilities, as well. I think we're seeing an increasing response by some governments in Canada, through legislation, so obviously, you know, Ontario has had the Ontarians With Disabilities Act for more than a decade and a half, Manitoba and Nova Scotia have come on, the federal government came on, and you folks in British Columbia have your own Accessibility Act. And while they're not perfect, I think they show something really, really important about our level of awareness and structural change happening, and I see it in things like accessible documents, I no longer have to explain to people why we need accessible documents, there is - or how to make them accessible, right? Like there's so many more resources and procurement, like buying goods and services that are are accessible through universal or inclusive design, or arguments that I have a much easier time making now. So those are some of the big changes that I've seen.
Evan Kelly 6:11
And you mentioned COVID, in your mind, did that highlight some more issues that needed to be considered?
Deborah Stienstra 6:19
Absolutely, I don't think there was anything new that came out in COVID, that we hadn't known before about the experiences and exclusion, and barriers to access. But what it illustrated was how those get intensified in situations of emergencies, and how people need to be included in thinking through our plans for responding to emergencies. And I think the other thing that that came up was an understanding of the intersectional discrimination that different groups of people with disabilities experience. So there's increasing awareness of racialized people with disabilities, who may be working, for example, in health care systems, or chill children with disabilities, seniors with disabilities who live in long term care homes, indigenous people with disabilities and the different access to services that they have if they live in First Nations communities or Inuit communities than those who may live in urban settings. So what we saw and we did a major research project about policies related to COVID, and disability inclusion. And what we found was there is a opening right now to respond to some of the systemic inequity. And if we don't take action now it's not, it's going to be a long time before we get another sense of, of this opening of awareness.
Evan Kelly 8:21
Yeah, I mean, COVID is one thing. Obviously, these are sort of, you know, natural disasters, if you will, the one thing we experienced here in BC, and became a very important thing for us to sort of notice was we had that heat dome last year, if you recall. And we had over 600 people die as a result. And one thing that we realized is that there needs to be better communication, better understanding between people and those with developmental disabilities. Because in one case, I did talk to this one woman who lost her sister. And it was just they didn't know, they didn't know that her room got that hot, and her sister didn't really know how to communicate that. So when, when it comes to some of these things in creating new policies, I guess where does it, where does that fall into in terms of helping define human rights and protecting lives from these kinds of things?
Deborah Stienstra 9:19
Absolutely. And I think that's that example of the heat dome is a horrific but really clear example of what happens when you don't imagine people with disabilities in your decision making and planning. Right? So we didn't imagine the sister that you talked about in the discussions of how to ensure that there were were cool spaces or that there was built in air conditioning or things like that, and how would we have known? Well, we needed to have her or somebody who could, who was aware of her situation, be at the table, in order to illustrate, sort of what she lives with. And I know that you've had a commission of inquiry and that there have been, there was initially a person with disabilities on that, and that that voice wasn't listen to, that that perspective wasn't included, necessarily. And that's, I think, a bit of a challenge. When people with disabilities offer their expertise, they also need to be listened to. So the inclusion needs to be at the table and in the decision making, and in the follow up.
Evan Kelly 10:43
Yes. Sorry. Go ahead.
Deborah Stienstra 10:46
No, so I was just gonna say, I think that's it's a model for all policy. It is about having people with disabilities or their representatives at the table, when decisions are being made with the resources, including financial resources, and accessibility supports, to support their full participation, and making sure that it's not pro forma, that it isn't just, you know, something that is nice. And we can point to the one person who sits on there, that it's, it's substantive, and that it's listened to, and taken seriously. And, part of the decision making.
Evan Kelly 11:32
Absolutely. Now, you mentioned something in the sort of financial vein, the federal government's, of course, I'm sure you're aware of tabled the new Canada disability income benefit. I'm not entirely sure where it's at at this stage. I think it's been through a second reading. But that's, that might be about it. What, what sort of impact are you hoping for this new bill, assuming it gets pushed through?
Deborah Stienstra 11:53
Yeah, and I think that's still up for grabs. I think it's really important for a portion of people with disabilities. And it's important to also not to look at it as the be all and end all of disability supports. So it targets people with disabilities who don't have access to employment income, and who are lower than retirement age, but older than youth. And so what it could do is make sure that they have a consistent, reliable income, that means that they don't have to go on social assistance. And as we all know, social assistance is where lots of people with disabilities end up because we don't have inclusive workplaces, we don't have appropriate supports. So, and we don't have good mechanisms to provide income for many people with disabilities. So social assistance ends up being where folks end up and that is below poverty wages and below poverty income. And so this, if and I hope we can say when, it becomes law, we'll be able to address some of those gaps.
Evan Kelly 13:23
And so the way it is right now, I get the sense that you feel that the government's on on any level, aren't quite doing enough to support people with disabilities financially.
Deborah Stienstra 13:35
I think that disability isn't something that anybody... it is a bit of a lottery, my body works a particular way. And I then in a society where we don't provide supports related to disabilities, I end up bearing the costs of my differences because the society was built for people who aren't like me. So an example that I often like to use is infrastructure and lights. As a sighted person, I need lights to work in the dark when the room is too dark. I don't even have to ask for it. I can turn the lights on because somebody imagined me there. They imagined me as a sighted person needing lights to do my work. My blind friends don't need lights to do their work. Yet they're paying for the hydro costs to give me lights. Well, why shouldn't we pay, as sighted people and non disabled people, for the supports that allow all of us to participate in society? And that's where I think governments have over responsibility to take tax dollars to use for the benefit of those who haven't been imagined in our society and who have to pay for the costs, the barriers to access that exist as a result.
Evan Kelly 15:22
So let's sort of backtrack. What sort of projects are you working on right now?
Deborah Stienstra 15:28
I have many projects.
Evan Kelly 15:30
That, I'm not surprised.
Deborah Stienstra 15:34
Let me talk about two, I am leading a partnership, sort of, grant related to disabilities and livelihoods in Canada. And it's trying to take a notion of livelihoods which is different than work or employment. it's broader than both of those. And it includes, livelihoods are the ways in which we make a living and a life. And so livelihoods can be about how we barter, how we provide care, how we have market gardens, how we do arts and use those as sources to support ourselves. And so we're looking at how people with disabilities in Canada, in a couple of different areas, help us understand this notion of livelihoods and how it helps us understand both participation and inclusion in society. So we're looking around the area of volunteering and people with disabilities, we're looking at arts and people with disabilities. And the one that I'm in particular focused on is around pre employment supports, and young women with disabilities, and what does it take to address for example, the childcare needs of young women with disabilities or the educational gaps or appropriate supports to ensure better access to income. So that's a project that I'm pretty excited about, we just got noticed that the disability and work conference in November of this year, we'll be presenting a panel on some of our research related to that, and I'm excited about that.
Evan Kelly 17:29
That sounds really good. I don't know if, you're in Ontario, we're out here. But here at DDA, we've got two social enterprises, one of which is our organization called Jobs West, where we actually, we work with employers and clients so that people with developmental disabilities can find and keep jobs. It's a big part of what we do. So it's, it's super, super important. Let's talk a little bit about MAiD the medical assistants long dying this is this is this is a big topic here in Canada right now. Of course, it's DDA we haven't really taken a stance on this. But I'm starting to see other newsrooms around the world publishing content, saying some pretty nasty things about Canada, how we're now practicing eugenics, and killing disabled and poor people. What are your, or your primary concerns when it comes to this kind of a law?
Deborah Stienstra 18:29
Well, I have oh so many concerns. I think that medical assistance in dying as it's come to be developed through the various amendments and changes and law in Canada is one that privileges white people, often who aren't used to having to be dependent or rely on others, to live their lives and don't want to imagine themselves as people who are dependent and so they see that as something they'd like to avoid. Well, for lots of people with disabilities, we know what it's like to, you know, require supports to live our daily lives, whether it's somebody to check in on us or somebody to wipe our bum or change our diaper or somebody to change the catheter or give us food or whatever. And so many of us don't feel as much like we've lost our dignity when we are in those relationships of care and dependency, but see it as sort of an interdependence. And I think what MAiD is doing is creating space for some people to have a choice and I'm glad that some people have that choice, but in other cases, it's creating a situation where folks who haven't been able to get the supports that they need to live or to live well, whether that's because they can't access housing, and they have chemical sensitivities, or because they've had to live so long in poverty, they're just kind of worn out of trying, or they haven't been able to get the medical supports they need. And somebody offers it to them as an option. And it may be somebody in a relationship of trust, or somebody, like the stories that have come up lately about Veterans Affairs, raising it as an option. So to me, medical assistance in dying in those situations, is something that is not a choice, but is a forced situation, we are not able to provide the necessities of life. So people think that their only option is to end their lives. I've called this other times sacrificial citizenship, where people don't, with disabilities, don't want to be seen as a burden to their families. And they've been told that they're a burden on society, or they cost a lot to take care of. And so they sacrificed themselves, well I don't think that's appropriate. So I think, I think it was really troubling to have the substantial changes to MAiD discussed in the middle of a pandemic, where people with disabilities were the ones bearing the heaviest burden of the pandemic barriers. So I think there are lots and lots of problems with this. And and I think the government, the federal government, pushing forward on MAiD full steam, but dragging their feet on the disability benefit is not a very good sign, right? They should be pushing forward on the disability benefit and dragging their feet on medical assistance in dying.
Evan Kelly 22:20
Yes, perhaps a little bit backwards. So I mean, I've been reading some sad stories, similar to what you've just been discussing. So how through Disability Rights do we protect those who may not see another way out of a bad situation, but death probably shouldn't be their option.
Deborah Stienstra 22:40
First, we need to be there for each other. Pierce support is a really, really important part of living with disabilities. And we all feel stronger when we know we're not alone. And it's hard when you feel like you're just being ground down by your day to day existence. So I know behind the scenes, a lot of these public conversations, my colleagues in the disability movement have been advocating and raising funds so that people feel like they have more choice. But that can I mean, with more and more stories coming out, we can't do that in every case. So I think as advocacy organizations, there's a responsibility to continually prod and push and articulate the gaps in care the reasons why this is happening. I think, folks like cat, Catherine for Z and others have just done an exceptional job in having Gabrielle Peters really exceptional jobs in her in raising the concerns, and making sure that we understand that racialized and indigenous people with disabilities are those who experience more of more of the push toward medical assistance and dying, because they often live with more of the poverty and the barriers to access. So I think, you know, listening and supporting and circulating what those folks have been saying is really, really important. And, you know, for those of us who are lucky enough to get invited to speak publicly, and bring it up at every single person, I mean, when I'm interviewed by the press, I often bring it up, because they don't think of me as somebody who is a maids spokesperson, but I think it is not letting those stories go on tooled, like not letting government's step away from the responsibility of the situation they've created.
Evan Kelly 24:53
So what are some of the biggest challenges you face in trying to elicit change on any particular level of government?
Deborah Stienstra 24:59
Governments are very slow moving, frankly. And they are accountable to an electorate regularly, like every four years, and there's always the possibility of not having the same government or the same government with the same priorities. So, for me, governments are only a piece of the advocacy toolkit. I keep my relationships with those bureaucrats inside governments close, because they're the ones who are more stable. But we also reach out to ministers and, in committees and things like that. But I think it's also about using social media, effectively, it's about sharing information. You know, as a researcher, I have access to lots and lots of information. And part of what I see my job is, is to make sure that what we learn needs to be not just shared in formats that policymakers can understand, but in formats that public health folks want to know. So having factsheets or hot topic sheets, or policy briefs or Twitter, you know, bite sized pieces, so really trying to reach out and raise awareness of a lot of these issues.
Now, in general, how was Canada doing in terms of disability rights? Are we on the right road? And obviously, there's, there's problems and a lot of things we've we've talked here, but are we, are we on the right path? Or does something need to be rewritten? I know that in reading some of your bio, you mentioned this universal planning rather than, I mean, because from a disabilities point of view, we often look at making something accessible, which, you know, that sounds good. But coming at it from a universal perspective, rather than just making something accessible at the moment. So I guess it's a sort of a, a big, big blanket question is, do we need to sort of change our perspective? Or keep working on changing our perspectives? Like how far have we got to go?
Right. So we began this conversation by me saying, yeah, the research is fine, but really, this is personal for me. And what I find is, change happens when people can see a personal link. And they can then imagine, when they begin to hear stories of people who are real human beings and the implications of those stories. So the change, I think, Canada is not dissimilar from many other places around the world. Some good, lots of bad. But I have hope, because the advocacy of disabled people together with their families, or the representative organizations, and really pushes when they, we are out on the streets and in a playground. And you see a disabled child on a swing that's been built to be accessible through using inclusive design. It changes your notion of who are disabled who are children, right, because you now include in your picture, this child who may be in a wheelchair, as part of your neighborhood, and I love to tell a story of somebody, a leader in the disability community, Jim Dirksen who recently died. Jim lived in my neighborhood and Winnipeg when I lived there. And Jim was an amazing character. He was a wheelchair user, he had polio when he was younger, he wore very evocative clothes like you always knew where Jim was, but he made, he just drove around my neighborhood. And everybody in the neighborhood knew Jim. And it was no big deal, right? Like, by being present in the neighborhood in house like all the rest of us, he was our neighbor. And that's I think how change happens is when people with disabilities are part of our communities, when we are included without having to make big adaptations or whatever when we use inclusive design in our homes so that people can visit us who may have mobility barriers or you know, when we have scent free environment so that folks with chemical sensitivities can be at discussions and meetings. Those are all ways that we build inclusion and belonging. And we recognize that disability is just part of the range of what human life is about.
Evan Kelly 30:31
I think you wrap that up nicely. I was gonna say if you do have anything else to add, but I think that just sort of hits hits it right on the head. It's all part of it.
Deborah Stienstra 30:39
I think so. Yeah.
Evan Kelly 30:42
Just one thing that your your book about Canada disability rights, Second Edition, where do people find it?
Deborah Stienstra 30:49
You can find it on Fernwood Publishing's website you can also find it in in some stores. It's available... It's available as audio book, as well as a PDF book and hardcover book. So it was my first experience in having an audiobook which was a lovely thing to have this, a woman read my text with lots of things. So there are a number of ways for folks to do it. But Fernwood publishing is the best place to look. So that's where you can find it on Amazon and all those other places.
Evan Kelly 31:30
I believe I did see it there. Yes. But Fernwood publishing is the main one. Okay, well, today we have been listening to a developmental disabilities encouraging abilities podcast. Our guest today has been Deborah Stienstra. Again, author of about Canada disability rights, Second Edition, disability and woman's advocate and professor of political science at the University of Guelph. Once again, we thank you for joining us today.
Deborah Stienstra 31:54
Thanks so much. It's been a pleasure.