Women and Girls with Disabilities: Let's change how we approach inclusion

Welcome to the fourth podcast episode of the Inclusive Research with PIRL podcast. This month we celebrate women and in this episode, we celebrate Women and Girls with disabilities. We are joined by Deborah Stienstra and Bonnie Brayton to talk about a game-changing research project that seeks to co-create with women and girls with disabilities and center their experiences in identifying and addressing gaps in their inclusion. 

For the full transcript, Biographies and other resources, please checkout the podcast website:  https://inclusiveresearchwithpirl.buzzsprout.com/  

Where to find us 

Youtube:  https://www.youtube.com/watch?v=d6j7iKcXmpY&ab_channel=PIRLProject 

Website: https://oticlab.utoronto.ca/research-projects/pirl/about-the-pirl-project/  

Email: PIRL@utoronto.ca

Speakers’ Bios:

Deborah Stienstra holds the Jarislowsky Chair in Families and Work at the University of Guelph, where she is the Director of the Live Work Well Research Centre and Professor of Political Science. She is the author of About Canada: Disability Rights (Fernwood, 2020). Her research and publications explore the intersections of disabilities, gender, childhood, and Indigenousness, identifying barriers to, as well as possibilities for, engagement and transformative change. Her work also contributes to comparative and trans/international research and theory related to intersectional disability rights and justice.

Bonnie Brayton is the National Executive Director of the DisAbled Women’s Network (DAWN), who recently celebrated 35 years in service . Bonnie is a recognized leader in both the feminist and disability movements in Canada and internationally.  Ms. Brayton is also a founding member of the Ending Violence Association of Canada and served on the Steering Committee of La Maison Parent-Roback, from 2008-15.  Ms. Brayton serves on the Advisory Committee for the Jarislowsky Chair in Families and Work at Live Work Well Research Centre at the University of Guelph. She is also the Partner Liaison for a seven-year initiative based at the University of Guelph called “Engendering Disability-Inclusive Development” (EDID). From 2016 to 2021, Ms. Brayton served as a member of the Federal Minister’s Advisory Council on Gender-Based Violence (WAGE).  During 2020 and 2021, Ms. Brayton also served Disability Advisory Group the DAG for Minister Carla Qualtrough.

Bonnie has also contributed to several anthologies including A BOLD VISION and LIVING THE EDGES, a DisAbled Women’s Reader and the newest release (2021) from Inanna publications STILL LIVING THE EDGES.  

Transcript

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Lesley Sikapa: Hi, and welcome to the inclusive research with PIRL podcast. My name is Lesley Sikapa, and in this episode, I was joined by Bonnie Brayton and Deborah Stinstra to discuss the need for adequate inclusion of women and girls with disabilities. We also talked about an innovative and exciting international research project they had initiated, to identify and address gaps around the inclusion of women and girls with disabilities. 

As always, the full transcript of this conversation can be accessed through the link in the podcast description. That being said, Let’s jump right into it

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Lesley Sikapa: Hi Bonnie, Hi Deborah, thanks a lot for being here today. It's quite exciting to have you two here and again it's March 8th, which is International Women's day so, happy Women's Day. Happy Women's Day to you two.

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Lesley Sikapa: And, and I know that by the time we are going to upload this episode it won't be March 8th anymore, but happy women's day to all the people who are listening to this as well.

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Lesley Sikapa: So we always like to start these conversations by getting to know who is at the table, who we are listening to, so I would love for you to please introduce yourself to the audience and we can start with Deborah then Bonnie.

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Deborah Stienstra: Sure, thanks Lesley so much for inviting us and for making this possible and happy International Women's day. It's a big holiday in my world so I'm grateful to be celebrating it this way.

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Deborah Stienstra: I'm a professor of political science at the University of Guelph, but I also hold the Jarislowsky Chair in Families and Work. 

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Deborah Stienstra: And in this context, I'm the project lead on an international network, called “Engendering Disability Inclusive Development”. And its goals we will talk a bit more about later I'm sure are to ensure that the rights and justice and spaces for and with girls and women with disabilities are created and supported.

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Deborah Stienstra: I identify as a woman with disabilities and I'm coming to you from Guelph which are traditional lands of the Attawandaron people and the Treaty lands of the Mississaugas of the Credit.

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Bonnie Brayton: Thank you Lesley. Thank you so much for having this conversation with us today and for bringing us together to talk about the work that we've been doing together.

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Bonnie Brayton: So my name is Bonnie Brayton, until yesterday or should say last week, I was the National Executive Director of DAWN Canada, but DAWN Canada is just moving into our 36 year of service and I actually just become the chief executive officer of DAWN Canada.

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Bonnie Brayton: Very first one, and I think that's an exciting thing to say on International Women's day because what that speaks to is that the national feminist disability movement in Canada is growing.

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Bonnie Brayton: And our existing DAWN Canada'a head office is located in Montreal in the unceded territory of the Kanien'kéha, in a feminist collective called “La Maison Parent Roback.” And I think that's a pretty good introduction.

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Bonnie Brayton: I am a woman with a disability, I live with post polio syndrome, I’m a cis-gender female and delighted to be with you and you with us today, thank you.

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Lesley Sikapa: Thank you a lot for those introductions and congratulations Bonnie as well.

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Lesley Sikapa: In today's episode, we want to focus on women living with disabilities. To kick off the conversation I'm glad Deborah kind of mentioned that but there's a very exciting project that Deborah started with a couple of colleagues.

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Lesley Sikapa: And would really love to know a bit more about it. Could you please tell us about the project, how it started, and what you hope to achieve.

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Deborah Stienstra: Great. Thank you so “Engendering Disability Inclusive Development” and I'm never going to get the French name right “Genre, Handicap et Développement Inclusif”

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Deborah Stienstra: We call “EDID-GHDI” as an acronym, is an International Partnership project funded by the Social Sciences and Humanities Research Council through a partnership grant.

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Deborah Stienstra: This version of it began, we were founded in 2020 right in the middle of the pandemic and that's changed everything for how we've identified and created how we work together. It is embedded in four countries, in Haiti, South Africa, Vietnam and Canada.

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Deborah Stienstra: And, as I mentioned we're looking at and creating spaces to have conversations with, by and for women and girls with disabilities.

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Deborah Stienstra: We also work transnationally, looking at the spaces, rights within United Nations system, but also other transnational gatherings like the recent Global Disability Summit for how and which girls and women with disabilities participate and contribute.

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Deborah Stienstra: And we look across the countries thematically at common areas or cross cutting themes that are evident in the lives of girls and women with disabilities so we've done a project on Covid-19 and the impacts of Covid. We anticipate beginning a thematic project around gender-based violence in the near future that Bonnie will be co-leading.

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Deborah Stienstra: And yeah, we work to do research, to share knowledge. We will be hosting our first partnership team meeting and we can't do it in person, because of Covid in June of this year.

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Deborah Stienstra: And we can talk more a little bit later about some of the other ways that we're bringing together girls and women with disabilities. I don't know Bonnie as our partnership liaison, do you want to talk a little bit more about EDID?

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Bonnie Brayton: Of course, so the EDID project, I think, certainly for your listeners Lesley, needs to be understood in terms of how Professor Stienstra described it.

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Bonnie Brayton: it's actually a global game changer in terms of what it represents and that's because women with disabilities are the largest minority groups in the world. That's according to the World Health Organization.

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Bonnie Brayton: They are the largest minority group in Canada, 24% of women in Canada live with disability, you add the lens of race blackness and, in indigeneity, and you're at about 30%.

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Bonnie Brayton: So, in terms of the significance of EDID it's really hard to stay strong enough how important it is because our government, of course, has a commitment to feminist foreign policy, but by DAWN Canada having the privilege door with Professor Stienstra in the Social Sciences and Humanities Research Council grant for the next seven years,

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Bonnie Brayton: this is a runway to policy change to policy reform. So on a fundamental level like I said it's a game changer not only for what it can do globally and again that's really as you can hear the focus in terms of the other countries where I had women that i've been working with for more than a decade

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Bonnie Brayton: Right now there's going to be resources, now there's going to be the support of the academic lead, the community based researchers in the country and the ability to work together

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Bonnie Brayton: and to work together in a space that supported instead of unsupported because that's essentially what women with disabilities leaders have been doing for decades now.

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Bonnie Brayton: So like I said it's an incredible, like I said, game changing kind of not just research but, like, I said that kind of thing, I mean Deborah and I had a conversation a while back about how.

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Bonnie Brayton: She's doing this from one place and I'm doing it from another, but that we sit together, that we are like two loons with our eggs and holding is important, important to work together and it's begun now and we've already begun to see results.

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Bonnie Brayton: As she mentioned there’s already a project underway in Canada that's going to create the resources for a feminist disability network in the country that hasn't been possible for DAWN without these kinds of supports and resources so like I said it's a game changer it's, it's a breathtaking impactful undertaking that, like I said we, we should come back every year and give you updates, that's what I think.

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Deborah Stienstra: And, and maybe from that I can just illustrate some of our partnerships. So, as Bonnie mentioned in each country, we work a with Canadian researcher, a researcher in that country, and a disabled persons organization. If possible, we also work with governments where possible.

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Deborah Stienstra: We co-design and co-create what research gets chosen and how the research gets chosen. So it's very much a community engaged model where the community leads are setting the directions according to their priorities, not the researchers priorities.

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Deborah Stienstra: We also try and work across sectors. So Bonnie mentioned that we're working with civil society organizations in Canada and each of the countries, but we're also working with governments

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Deborah Stienstra: So, for example, Global Affairs Canada is one of our partner organizations, which means we get emails, conversations, we get invited in, to help Global Affairs figure out how to implement its feminist international assistance program as well as its feminist foreign policy.

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Deborah Stienstra: We also want to work with students and not only our students, those who work with us as graduate research assistants or undergraduate research assistants, but we're also going into the classroom and inviting students to help us do the research.

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Deborah Stienstra: So, for example, we have a project right now with a development, International Development Studies class, where the students are working with our community partners to take on some of the research.

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Deborah Stienstra: and so they're gaining research experience but they're also learning about what partnership relationships look like and what are the implications of that.

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Bonnie Brayton: I have a good example from Canada as well, is that, through this project again in terms of the Canada country study we've been able to bring in other national disability organizations that DAWN worked with.

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Bonnie Brayton: And we're starting to finally see the space where there's movement in the disability community around women's issues, which is something that like I said for decades didn't happen.

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Bonnie Brayton: The genesis of DAWN Canada Lesley, is actually linked to the fact that, there were two public servants, you know going back 36 years ago, who noticed there was a lot of focus on disability and a lot of focus on gender and none of those intersections were happening

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Bonnie Brayton: And so, like I said, really like I said when you think about how incremental it has been until now, I take that this project is like putting, I don't know booster juice into the whole mix if you want,

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Bonnie Brayton: Because, like I said, the increased capacity, it provides for women with disabilities in Canada, but also for the international partners, is enormous in terms of what that will allow us to do, and in terms of the kind of policy reform that we can, we can start to talk about in a more meaningful way and to engage in a more meaningful way.

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Deborah Stienstra: We're excited because, in the spring of 2023 a year from now, we and Guelph will be hosting a global meeting of women with disabilities, as well as a young women's forum. 

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Deborah Stienstra: We hope to bring 40 or so women with disabilities, if Covid allows. together to strategize about how to make change to learn from each other and to share their experiences and feel like they are part of a broader network.

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Lesley Sikapa: Wow that definitely sounds so exciting and I feel like Bonnie summarized it well, it is a game changer just hearing about  all the different actors involved, and whether it's at the government level but also wanting to involve students in the process.

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Lesley Sikapa: And this is really exciting and I'm really looking forward to see where it goes and where it gets from this point.

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Lesley Sikapa: And as you were talking, I was just thinking about how it's important to make sure that community voices are at the front as Deborah was talking about and I would like to know what are some of the steps that you've either already taken or some of the steps that you plan to take, to make sure that Women and girls with disabilities are actually engaged and involved in meaningful ways?

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Bonnie Brayton: Can I answer first this time, because Deborah will give you a really good answer.

Lesley Sikapa: Absolutely

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Bonnie Brayton: But the point is, the point is, the reason I'm sitting here is because of that. The point is that an academic like Professor Stienstra,

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Bonnie Brayton: Right, because she didn't write this SSHRC once or twice she wrote this several times before she was able to get the funding and like I said that's fierceness, that's determination and that fierceness and determination, you see in her and you see me is because.

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Bonnie Brayton: We understand the urgency and importance of amplifying and centering, in fact, the voices of women and girls with disabilities.

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Bonnie Brayton: In Canadian and international policy if we don't do that, we effectively don't have a meaningful feminist movement because we've left fully one quarter for women behind.

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Deborah Stienstra: Thanks Bonnie, I think, I think you're right. It is about relationships and so part of the history Bonnie’s mentioned, is that this has been a long time in gestation.

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Deborah Stienstra: As a mom, you know, I know about birthing or at least I know about birthing in my body, but this project has been a birthing process and it's been a very long gestation. 

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Deborah Stienstra: We began with the project when I was in Halifax that we often talk about where we brought together some development study scholars and invited them to create relationships with scholars in a country.

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Deborah Stienstra: And over the years, so that was in 2013, 14 over the years, those relationships have strengthened and solidified and expanded so, for example in Haiti, my colleague in Canada, Stephen Baranyi. Never he never studied disability and development before, but through this work has done it. 

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Deborah Stienstra: He developed a relationship with Ilionor Louis at the Universite D’Etat D’Haiti and they, together with Dominique Masson who is a professor of women's studies that Ottawa university created relationships with many women organizations and women with disabilities organizations in Haiti to do the work of EDID in Haiti.

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Bonnie Brayton: And here's where the convergence becomes fascinating Lesley, because where I connect with that same group, okay, so Soinette Désir is the woman who is one of the project leads from Haiti. Soinette and I don't connect through them, we connect through the UN and through the UNCRPD meeting and through finding ourselves in this space where again at the UN Convention on the Rights of People disabilities meetings, which are annually, in the same way that {inaudible} are, right

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Bonnie Brayton: For decades, for more than a decade women with disabilities have been gathering and being left out. And like I said, there was a moment, if you will, in 2019 it was the last time before COVID that we were all together in that space where we decided it was time.  And, like I said the convergence of these things is very much like I said about a lot of people working at this for a long time and it's not accidental, it is hard work, and it is staying at it and it is in terms of like I said the potential for this is there because it has this long runway.

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Bonnie Brayton: Too much of what happens in terms of policy is built off somebody election promise and something electable. The real strength of this, this is going to surpass any one government, whether it's here in Canada or International.

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Bonnie Brayton: Like I said, it is about creating long term commitment and it is about that, but like I said this sure has potential like I said to to really put down that kind of like I said embedded policy at the federal level here, you know it will be beyond this government, for example, so.

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Deborah Stienstra: Let me give you another example of sort of the way we've been thinking about involving girls and women with disabilities, because not only do we want to have these relationships extend over our lifetimes. We want to make sure that there are girls with disabilities who feel like they have of women with disabilities who they can learn from and work with.

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Deborah Stienstra: So in Vietnam, our colleague Thuy Nguyen, who is a professor at Carleton University and originally from Vietnam had a long standing project With girls, an arts based project with girls with disabilities, that I became involved with. And that has morphed into EDID Vietnam. So our relationships with the organizations, our partner organizations in Vietnam have been there for many years,

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Deborah Stienstra: And we continue to work on a mentoring model where we from the Global North come in with resources and some supports but it's really the women and girls who set the direction and take it forward and imagine how things are going. So Thuy will be in Vietnam for two and a half months this spring working on building those relationships and she, I always think of it as a, almost like a spider's web of relationships.

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Deborah Stienstra: So Thuy is working on EDID Vietnam, but she's also created a new network that Bonnie and I also part of with women and for young women and girls in India, South Africa and Vietnam, so a Global South organization and research project, rather than one. so it's it's about shifting it all the time.

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Bonnie Brayton: Another thing that's important to understand in terms of the huge gaps for women with disabilities in terms of many of the services that other women have access to is that peer support is something like I said that that needs to be understood to be a really critical way that we, we do this and peer support means just what it sounds like and what we understand it to be. It's just that we need to be together.

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Bonnie Brayton: If you look at the Canadian context Lesley, there’s only one national organization for women with disabilities, despite.The fact that like I said we make up more than one quarter of the population and at the provincial level there aren't any groups and at a local level there's a handful, one that's perhaps funded besides DAWN.

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Bonnie Brayton: we're the largest minority group in the country, but it's really important this critical mass that, the pieces that Deborah is talking about the space for it to grow is so critical because it is through the leadership of young women with disabilities, today young feminist disability activist and through building this space for girls with disabilities, DAWN Canada has a project in Canada called ‘Girls without Barriers” that is absolutely aligned with and will fall into this project,

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Bonnie Brayton: Professor Stienstra is working on a project in Canada around livelihood, these are all different pieces, but they all converge. And like, I said that is why EDID is so important because we will be able to hold this space for long enough to really have an impact, because that is why it hasn't worked until now that long term commitment hasn't been there and it's always on the backs of civil society organizations like DAWN here in Canada or, like the other ones in other countries that you know, Deborah has been describing we're working with in South Africa, in Vietnam and in Haiti.

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Bonnie Brayton: That's fundamentally where we have to see that change right, it has to be reflected in policy, in government policy and in policies of other human rights organization. It's very exciting and it's also long past you.

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Lesley Sikapa: Yeah, indeed, and as I listen to you talking about how much hard work or how much work is needed by women with disabilities to be able to actually get to this point or make this type of what happen, I felt like that was a really good transition into the next question which is about,  How visible are women with disabilities and initially I really wanted us to focus on how visible they are in the disability community, but let's look at the bigger picture. How visible are they in general?

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Bonnie Brayton: Sure. Well, I was gonna say my friends from Women with disabilities Australia, wrote a publication in 2004. That was the first piece of work that I read and it still to this day stands true, and it was called forgotten sisters because when with disabilities have been the forgotten sisters of the feminist movement.

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Bonnie Brayton: But you know I mentioned to you before I came on this call that I had the honor of being on a call with something called the Feminist Influencing Group and the Deputy Prime Minister. And like I said I'm delighted to say that, with every one of the women who spoke today that women with disabilities were included, but I think the point I want to make is, I was still the only woman with a disability at the table. And like I said that's big progress, its huge, I can't say enough to thank the sisters who are on that call with me today.

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Bonnie Brayton: But you know, when I see more women with disabilities, that are at the table that are probably self-identifying as women with disabilities, as well as being black or indigenous or whatever other identities they carry is when will be in a place like I said, where we need to be because it's critical mass, it really comes down to critical mass. So, No we're not where we need to be, we're not anywhere close to where we need to be here in Canada, or anywhere in terms of the disability movement or the feminist movement.

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Bonnie Brayton: But like I said work like this, projects like this and research like this is part of how we do create that and how that reform take place and that's why like I said Lesley, I hope we get to come back every year for the next couple of years to update you because this is a work in progress, but it's a really, really important and timely progress, especially with the current circumstances if we think about what the women with disabilities in the Ukraine must be going through today, we should take a moment to think about them, because they have nothing, and they have no one thinking about them.

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Deborah Stienstra: I wanted to just add, I think Bonnie said it really well, but I wanted to just add, I'm going tomorrow to a two day network meeting on women peace and security and I'm going there because that area of thinking about women peace and security has pretty much ignored women with disabilities, except I've been knocking at the door. But they've given me 15 minutes to talk about what it looks like and I'm going to start by reminding them about the women with disabilities in Ukraine but also asking the question of how many people would feel comfortable right now with women with disabilities being the lead of a women's organization, speaking for all women, right?

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Deborah Stienstra: So often, we think that women with disabilities can only speak for women with disabilities, but we think nothing of women without disabilities speaking for women with disabilities. So when is it what is it going to take for us to shift our thinking to see women with disabilities as leaders of women's movements, not just as women with disabilities movements?

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Bonnie Brayton: let's do a shout out for that very purpose, because there is at least one I can think of today that's Kara Gillies, she’s the Executive Director of Action Canada for Sexual Reproductive Health and like I said again this is such a rarity that it needs to be named in terms of somebody that I can think of who proudly self identifies but Deborah's point really needs to be taken in terms of leadership.

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Lesley Sikapa: I see, so it's quite obvious that we are definitely not where we need to be and so much work needs to happen to get us there, but one thing that you did talk about was at least one step that can be taken is in the next conversation, in the next meeting you want to be able to see more women with disabilities different types of women with disabilities. So my next question and almost final question, as we are concluding this conversation is in addition to that, in addition to having more women with disabilities at the table, what would inclusion look like, or what should it look like for women with disabilities, in your opinion?

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Deborah Stienstra: Maybe I can start and I'm sure Bonnie will give lots of creative and important suggestions. For me inclusion, is when you don't have to ask to be included, or to have the supports necessary to be included. So I often give the example of sighted people, walk into a dark room and can turn on lights. Blind people don't have any trouble working in dark spaces and as sighted people we don't have to ask for that inclusion, it is already there waiting for us, I would like that to be the situation for women and girls with disabilities.

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Deborah Stienstra: that you go to a park and you were thought of and imagined as part of who would play or who would visit the park or you would go to a school and you were imagined, because the school is wheelchair accessible and has blind supports and there are teachers there to help people with different styles of learning. So it's about who's imagined in a space and that's what I would like in an activity.

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Bonnie Brayton: Thank you and I'm actually going to take advantage of the fact that today is International Women's day. Our new national director, Sam Walsh's blog is coming out today, so I'm going to quote from that because we went with the UN theme of “Break the Bias” so I'm going to share a couple of things from Sam’s blog. As a disabled person, know your power, know your value. Take up space in any way you can, engage online, write an editorial, join a justice group or give yourself permission to rest,  living a happy and fulfilled life with a disability is a radical act.

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Bonnie Brayton: As an individual who does not identifies as disabled when you meet someone living with a disability and let's say women, assume competence in value when interacting with someone who is a woman with a disability, ask questions you would like to be asked in a conversation, make a connection based on symbiotic value and understanding, rather than pity or obligation. Speak up against ableist assumptions, inquire about access, lead by example and be a connection and an ally.

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Bonnie Brayton: As an organization, and this is the one I think that we need to get through, right, create policies and expect and assume there will be members of your organization with disabilities. For example, hold meetings in accessible places even if no one requested it, and have accessibility based into your terms of reference. Hire facilitators, entertainers and other merchants and represent diverse or equities seeking groups. Recruit diverse membership and advertise accessibility policies.

00:26:44 --> 00:26:53

Bonnie Brayton: To break the bias is first to become conscious of it. Question why it exists and then build individual practice, space and community that disrupts. The revolution is now.

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[Music in the background]

Bonnie Brayton: And that is the best way to end this because that's a young feminist leader who is joining my team today speaking to all of us.

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Lesley Sikapa: To break the bias is first to become conscious of it. As Bonnie said, we could not have ended this episode on a better note. Thank you so much for listening to today’s episode.

Be sure to check out our previous episodes and if you have any questions or would like to know more about the PIRL network, feel free to reach out to us through our email address which is PIRL@utoronto.ca.

Thank you for listening and Bye for now.

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[Music fades out]

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