Disability Rights Advocacy | Season 2, Episode 3

This month, the podcast team interviewed Susan Sygall, the CEO of Mobility International USA, on her work ensuring disability rights around the world. We asked her about the stereotypes disabled people have to work against, how disability intersects with gender and where she sees the future of disability advocacy.

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Cheery Monday Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
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Episode Transcript

Rachel: Hi and welcome to the newest episode of the Women in Foreign Policy podcast. This month we are discussing International Disability Advocacy and we are going to talk to one woman who has been a key figure in leading the charge to ensure disability rights around the world. We’ll get to hear her perspective on how disability rights can truly affect all of us. So I’ll let her introduce herself now.

Susan: My name is Susan Sygall and I'm the CEO and co-founder of Mobility International USA. We're a nonprofit organization and national nonprofit based in Eugene, Oregon, whose mission is to advance disability rights and leadership globally. And we work in seven several different areas we work in the field to national exchange in the field of international development, also promoting women's leadership, disabled women's leadership, and all people with disabilities in order to build a pipeline of leaders with disabilities around the world. And part of our organization, which is funded in part by the State Department works to increase the number of people with disabilities in all types of exchanges. So that's anything from study abroad to getting Fulbright's the Peace Corps and all those types of programs and I’m thrilled to be on this call.

Ashley: What made you decide to go into advocacy? What brought you to this career that you’ve chosen?

Susan: It is a very great and interesting question on how I personally got involved in disability advocacy in that I'm originally from New York and I was growing up very athletic when Jeff decided to go to school at the University of Colorado and at that time, I was not a person with a disability. But I was interested in working with disabled people, but to be honest, I did not know any disabled people. And while I was actually studying at the University of Colorado in Boulder, actually taking classes around, sometimes disability and other issues. I was in a car accident. I was a passenger in a car accident.  I was not the driver. And at the age of 18, in a split second, I became a paraplegic. And so suddenly, in a split second, I went from thinking about disability issues as something I wanted to do academically to a very personal journey. And I began instantly to see some of the discrimination and the human rights violations that disabled people face right here in the United States. And so really, I didn't really change my career, but actually it just gave me a very adequate strong personal, and now professional, lens, to do something to ensure that all people with disabilities, whether in the United States and throughout the world, have the same rights as non-disabled people do. And having spent my first 18 years being a non-disabled person, it became quite evident to me the low perceived notions that people have about people with disabilities as well as the obstacles that are faced. And so that's how I got on this journey. And now I am a proud as we say, proud and passionate disability rights advocate and I'm actually proud to be part of the tribe of people with disabilities. 

Ashley: That is such an interesting story as well because I think that one of the things that a lot of people who maybe are able-bodied forget about is that it is not a continuous state necessarily, you're not guaranteed to always be an able-bodied person. And so like disability advocacy actually kind of affects all of us because as you say, in a split second, everything can change. And maybe suddenly you find that those that you thought was purely academic is actually deeply important to your life.

Susan: And also I just want to add to that - I think everything you said is true, and I think sometimes is very difficult for people who don't have disabilities to even believe or comprehend, but many of us from the disability rights movement feel a sense of pride to be a person with disability. I've played wheelchair sports, I've skied, I horseback ride, I travel all over the world. I love being part of the family of people with disability. And a lot of us also would not want to trade who we are or our identity as we know it now, which I think sometimes is also a little bit hard for people to understand because so much of thinking about disability is always in such a negative form. But of course, I think, at least myself included, we want all people to feel good, to feel fit, to not be in pain and to have healthy lives. So if you can sort of put that whole paradox together, it's just an interesting state of mind. 

Ashley: So, I was thinking about the intersection between ability and disability and gender. Are there sort of specific concerns that exist there or specific issues that women with disabilities have to grapple with that maybe don’t exist for other genders?

Susan: Women with disabilities face more chance of violence and then men. More chance of abuse, less chance of getting employment, even with food scarcity, less chance of having food. So there are many things - less chance of getting jobs, getting leadership positions, less chance of getting married, which, as you know, in many societies is very connected to getting land rights and just having any kind of economic independence or prosperity. So we know there's double discrimination for women as opposed to non-disabled women and there's more disabled discrimination of disabled women and girls than there is a disabled boys and men. So we know that's a very real fact. But, and again, we also always emphasize the positive of being a woman with disability because we work with thousands of disabled women and see how brilliant and resilient they are. One because they are women and they bring all those positive attributes. And because they are disabled women, similar to what I just said about myself, that we there's a real sense of pride of who we are. And also, women with disabilities obviously can have multiple identities when they're women who have disabilities who are also indigenous, women with disabilities who are people of color, women from that LGBT population, refugees. So I think the idea is always as you mentioned in your question, to think about the intersectionality and to realize that there are different factors that have to do with gender. And the other thing, obviously, about with disability that perhaps is different than some other identities is that a lot of times you can't just say everyone is the same and everyone is equal, and everyone is welcome. That the whole idea of providing reasonable accommodation to make the playing field equal. So you can’t say your HIV prevention clinic is open to everyone, unless you have put money in your budget for sign language interpreters, and you can’t say all your services don't discriminate if your place is in physically inaccessible places. So I think when you think of the whole making foreign policy, doing foreign assistance... all those things, you really have to understand that context of disability to really provide foreign assistance, do foreign policy, do disability advocacy, in a way that really sees disability through a human rights lens. So that's this kind of the simplicity of it and the complexity of it. 

Ashley: Specifically, what we wanted to look at what is not just sort of disability advocacy, but down to a specific jurisdiction, but those advocacy organisms that are working internationally, and I wonder if you have thoughts about the difference in that experience, or maybe the different difficulties you encounter when you're working internationally versus if you were doing like purely US-based disability advocacy.

Susan: Right. Well, I probably do more advocacy in the international arena. In the international development field the things that we are constantly dealing with is that people are receiving money from USAID and are doing foreign assistance programs. And are they really ensuring that all their programs and services are inclusive to people with disabilities, especially women and girls with disabilities. I think a lot of times people will think about diversity, but they don't necessarily consider disability as part of diversity, or they have not budgeted accordingly. And so they don't provide the accommodations that are needed so that disabled people can get the same programs outside the US. I think when we work with disabled people outside the United States, some of the differences is here in the United States where we have the Americans with Disabilities Act, that law has teeth, and there are consequences and you can sue people and leave even though everything isn't perfect, there are some very strong mechanisms for legal things. And when we work with disabled people's organizations in other countries, they all have laws pretty much but their laws don't always have teeth. And so that's another very big thing is how do you make sure what laws that can really be implemented and how also to make sure that the organizations are run by and for people with disabilities and are supported in a way that they can push pressure against the government or whatever to make sure that laws and policies are really enforced. 

Ashley: Looking toward the future then, when you are thinking about the next generation or the next frontier in disability advocacy, what is that for you? Where do you see this field or this sort of advocacy are we going in the next 10, 15, 20 years?

Susan: One of the things I was just talking to one of my colleagues and one of the women who participated in one of our women's leadership programs, who's a wheelchair, as we would say a wheelchair rider. She's now the Minister of Social Affairs for Armenia. So she's a very, very high up position in the government. And I think what I'm hoping is that we really need to build a pipeline of leaders, especially leaders who have a disability rights lens. And to do that we really want to encourage all young women, and especially women with all types of disabilities, to think of going into careers working in the US government being ambassadors, working in the field and all the NGOs and international development. And the way to do that, we see that a lot of non-disabled who have had experience in international exchange, they studied foreign languages. And so we want to make sure in the next few years that more and more people with disabilities, especially women with disabilities, really are making sure that they're taking advantage of the scholarships and doing those programs because I think to really have real change, we need more people who have a disability rights lens to be in leadership positions, which means you have to get those internships, study abroad, learn languages, just get all those skills. So we have more power and more positions, both in the US and globally, to be leaders and set the direction of what we want to happen.

Ashley: I think that's a really astute observation. And I hope certainly that that is something that you and the next generation of advocates can make happen. And also kind of along those lines, I wondered if there were careers in the disability advocacy space, that maybe someone outside of that space looking in might not know exists or ways that someone could engage in terms of a career or a job that they don't necessarily know from looking at that exists.

Susan: That's a great question and there's so many. If you're someone who wants to work in this space, there's independent living centres all over the United States that are needing great leadership in those places. At every university, there's disabled students offices, where people with disabilities who want to ensure that disabled students get all the resources and information they need for their education. I mean, those are just the obvious one. I'm really interested in people going into the international exchange field. I go to conferences, I just went to a conference for CIEE and there are hundreds of people from all over the world and they have fascinating jobs working in study abroad and professional exchange. And you can do a lot in that in those professions, ensuring that people with disabilities are in those exchanges making some of the topic areas about disability rights. And also if you're a person with a disability just there are so few disabled people in the whole international exchange profession. I also am on the board of interaction, which you might know is the umbrella organization of US-based NGOs working in international development. I'm now the only, I would say, one of the only visible persons with disabilities who's an advocate. And even if you don't have a disability, we need a lot more people to work for Oxfam, the International Youth Foundation, all those organizations and bring, whether you're disabled or not, bring the disability perspective. I mean, I am literally fighting every day to ensure that there are disabled people being included in all the youth programs. Is disability being done in each of these international development programs. So I want people who are interested in the disability space, in the rights space, in the justice the space to go into international exchange, to go into international development and to think about other careers. And on our website, we are really focusing on looking into careers that people with disabilities can go who are interested in international so I'm sure you'll post our website, it’s MIUSA.org. And, as part of Mobility International USA, it's the part of our organization that deals with that as a National Clearinghouse and disability exchange. That's the part of the organization that's promoting more people from other countries to volunteer studies or to do professional exchanges in the US, and also for people with disabilities to research, study, volunteer, do exchanges outside. And  I talk a lot about moving from inclusion to infiltration, that people have been talking about including disabled people for so long, but I don't think it's been that effective. So I think if you're a person with a disability, a young woman with a disability, then you need to be very proactive about going to those places, those organizations, those careers that you want, and not wait to get invited. And if you're a person without a disability you need to make sure someone is really going and finding the people with disabilities and ensuring that they're always part of your program. So I just think we need to kind of kick things up a bit because of just keeping the status quo I don’t think is working. 

Ashley: I love the idea of infiltration. That is a great word and I love its use here so much. So I have one last question. What is a piece of advice you would give your past self or something you wish you'd known when you were starting out. You were a young 18, 19 and a disability advocate and trying to figure out this space. What would you tell that person now?

Susan: I don't know if I'm just overly optimistic, but I'm so glad. I went forth doing things without necessarily wondering if I knew exactly what I was doing. So I started actually a nonprofit while I was an undergraduate at the University of California Berkeley that actually focused on led by and for disabled people. I was the co-founder and I was focusing on recreation sports, and I didn't know how to start a nonprofit, I just sort of jumped in and did it. And then later on, I got a rotary scholarship and spent a year in Australia, which was fabulous, and then started Mobility International. And again, I'm glad I didn't overthink. Do I know everything to do that? But I think the advice would be to surround yourself with people two things, one who sort of believe in your ideas and your dreams and sort of positive people and two to surround yourself with people who complement your skills. I mean, I'm hopefully good at being big thinker and creating things but I'm surrounded by people who are very logical and who write grants and who love doing budgets and, so I think you really have to see what you do and surround yourself with people who complement that. And now I'm kind of glad I didn't know everything because things I think I couldn't have imagined the impact that I think least my USDA has had. And I was glad that I didn't doubt it. And I think as much as people can while they're in school and studying, is to do internships. I did lots of independent studies. I did lots of creating my own projects. And being creative, being intuitive. I say going on exchanges, studying other languages. I think using your time when you're 18,19, 20 to not separate your academic life, from your career life, from your personal life from what's needed to happen in the world. And I think we only have a very limited really few years in this life we're given. And so to really try to have a much more holistic thing that you're doing what you want you doing based on values that you believe in surrounded by people who believe in you, and not to doubt yourself, and go forward. I would really love to see more young women, more young people really be in the field of internationalism, of foreign policy. I think we need to think more globally. I work with thousands of people from all over the world and it really does feel like a sense of a global family. But, until we have leaders that have positive human rights values around disability, the world isn't going to be the way that it should be. And I'm excited and I'm encouraged that I think the young women with disabilities that we're seeing now are just going to disrupt the status quo and make it a more just world. And I'm hoping that all the different movements from the environmental movement to the disability movement to the women's movement to the LGBT movement, I hope everyone will take on everybody else's issues and it will become one on one movement, because I think all the issues are really interrelated.

Rachel: We hope this episode was really useful to all women - those looking to become advocates, those with disabilities and those without. As Susan mentioned disability advocacy is something that affects us all because at any moment it could be our reality so ensuring those rights globally is crucial to policy that works for everyone. I want to thank Susan for her time and for the work she does at Mobility International USA trying to make the world an accessible place for everyone. I hope you all enjoyed this episode and please don’t forget to subscribe to us and rate and review this podcast on whatever app you use…that helps other people finds us! It also helps keep our podcast at the top of the listings and that helps us attract new listeners. While you’re at it - please subscribe to the women in foreign policy newsletter, which is available on our website.

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