Think Out Loud

Disability rights activists from around the world come to Eugene for training, leadership and sisterhood

By Sheraz Sadiq (OPB)
June 8, 2022 2:32 p.m. Updated: June 10, 2022 4:11 a.m.

Broadcast: Wednesday, June 8

Nearly two dozen disability rights activists from around the world traveled to Eugene to participate in the Women's Institute on Leadership and Disability program, including Aarthi Burtony, shown holding a red backpack, who traveled from Mauritius.

Nearly two dozen disability rights activists from around the world traveled to Eugene to participate in the Women's Institute on Leadership and Disability program, including Aarthi Burtony, shown holding a red backpack, who traveled from Mauritius.

Mobility International USA

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Nearly two dozen disability rights advocates from around the world are in Eugene right now. They’re participating in a program that has trained more than 200 women from 89 countries since its launch 25 years ago to help lead efforts to achieve disability rights in their home countries. We hear from Aarthi Burtony, an activist who is blind from the island nation of Mauritius, and one of the participants in this year’s Women’s Institute on Leadership and Disability. We’ll also hear from Susan Sygall, the CEO and co-founder of Mobility International USA, the Eugene-based nonprofit that created the program, about the impact its alumni are having around the world.

Note: This transcript was computer generated and edited by “Think Out Loud” staff.

Dave Miller: From the Gert Boyle studio at OPB, this is Think Out Loud. I’m Dave Miller. About two dozen disability rights activists from around the world are in Eugene right now. They’re participating in a nearly three- week-long program that’s trained hundreds of women to fight for global disability rights. The program is called WILD. That stands for Women’s Institute on Leadership and Disability. It started 25 years ago. Susan Sygall helped create it. She is a CEO and co-founder of the Eugene-based nonprofit Mobility International USA. She joins us now along with one of this year’s WILD participants. Aarthi Burtony is an activist from the Indian Ocean Island nation of Mauritius. Welcome to you both.

Susan Sygall: Well, thank you.

Aarthi Burtony: Thank you. Thank you to welcome us on the show.

Miller: Thanks for joining us. Susan Sygall first. Can you just remind us what WILD is?

Sygall: Yeah, great. WILD is a three-week, intensive training institute where we have disabled women from around the world come together, share stories, share strategies so that they can then go back to their own countries and make the changes that need to be made and just really increase their power and the solidarity of disabled women around the world globally. So it’s an amazing, amazing time for disabled women.

Miller:  Aarthi why did you want to take part in this program?

Burtony: I wanted to take part in a WILD for many, many reasons, and one of the most important reasons being to strengthen my leadership to acquire new skills, to be exposed to accessibility that you have in the city of Eugene in the USA that we probably don’t have in Mauritius; to go back to my country and implement solutions to the many problems and challenges that persons with disabilities face in Mauritius.

Miller: Can you give us a sense for your disability?

Burtony: Yes. So, I am a blind person. I have a permanent visual impairment.

Miller: And what is the state of disability rights broadly in Mauritius?

Burtony: The state of disability rights in Mauritius is that we have a social-based rights model with different pieces of legislation and disability rights. We don’t yet have one single piece of legislation with all the disability rights found in it. It’s not in a single piece of law. So it is embedded in different pieces of legislation.

And also, even though Mauritius has signed and ratified the United Nations Convention on the Rights of Persons with Disabilities since 2010, much work still has to be done. The [implimentation] of the convention is not yet 100% reality.

Miller: So, as you noted there, there are laws, it seems, on the books, if not one unified law regarding people with many different disabilities. But to what extent are the laws that are on paper actually followed?

Burtony: They are not enforced as they should be. Let me give you one single example, there are many reserved slot parking slots for persons with disabilities on the island, and to be allowed to use this parking slot reserved for persons with disabilities. We need to provide what is known as the parking coupon. And you would find around the island many motorcycles and bicycles and other kind of vehicles would park in those reserves slots.

And nothing will happen to them even though there is a fine imposed by the law of 600 rupes, which by the new budget which has been presented only one day ago, that is on 7th June, 2022, this fine has been raised up from 600 rupes to 2,000 rupes. But nobody cares. And those people without disabilities is still parked in our reserved slots because they know that they won’t get anything.

Miller: I’m curious what it has been like for you to navigate around Eugene. You said at the beginning that that it seems like you were impressed by either the services or the implementation of disability law in the US. What were you thinking about?

Burtony:  I have traveled before to the US in 2014, I was in New Jersey for the Mandela Washington Fellowship. So I have already experienced, let’s say accessibility for persons with visual impairment on the campus because that was at Rutgers University. However, I have not being exposed to accessibility for example, persons who use wheelchair.

So what is fascinating for me is that the wide range of accessibility you have. Not only for the public infrastructure, like pavements, like the traffic lights, like the doors, the lift, but also for sports. Yesterday we worked for accessible biking and for accessible games and accessible gym. I realized that once the universal design principle is respected, it will match with all types of disabilities.

Miller: Susan Sygall, you’re a wheelchair user yourself. I’m curious what you’ve learned in the course of your work over decades about how not the rights on the books, but the reality of life for people with various disabilities, how much it varies from country to country.

Sygall: Yes, well you know I am a self-described as a wheelchair rider, and you know, I’ve traveled, and I think it does change you know with each country. But the thing that I’ve seen that has happened that in every country there have been organizations formed by and for disabled people, and I think that is making a difference. And especially now the organizations run by and for disabled women. And I think where disabled people from different disabilities have formed together to  work with sort of one united voice for change that has made a difference. And for me, you know the difference of having a life, as Aarthi was saying, your rights are really implemented. That is, if you have a law, the law has to have teeth. The law has to have something that there are consequences for people who don’t obey the law. So I think the more we see disabled people, especially disabled women, taking their rightful place as leaders in being able to make changes then I think, that’s how we’re going to change the world. And also that disabled girls and disabled women grow up, as we say, being loud, proud and passionate and being assertive about taking their rightful place as leaders in the world.

Miller: I’m glad that you focus there on women and girls because that’s obviously the focus of this program. Susan, sticking with you just for a second: Why is that the focus of this program? When you look globally — I know that there is a great diversity of experiences —  but there has to be a reason that you created this program. What is the situation like for women with disabilities in particular?

Sygall: Right. Yes. So, you know, unfortunately the reality of our program works, our organization works with both men and women with disabilities globally. But we created this specific program WILD because that we know that women with disabilities are doubly discriminated against in employment, in getting education, in getting health care in so many things. And even sometimes programs that work on women’s issues have not historically included disabled women. So we focused on disabled women globally.

So disabled women can share their strategies and their stories. And this whole WILD program came out of the 1995 Conference on Women that happened in Eugene where we organized hundreds of disabled women. And they said, ‘We need a place where we can get together share information, share strategies.’

So disabled women who have been doubly discriminated against can finally make the changes that are needed, and for many disabled women that meant starting their own organizations.

I guess for me, you know, Dave, I’m thinking, instead of always talking about — which is true — disabled women being doubly discriminated against, that we have to also talk that we are doubly powerful. We are women and we are disabled women. And that powerful message of ‘We are the implementers of change’ needs to be heard around the world.

Miller: Arthuis, I’m curious what you do with that that last language switch that we just heard from Susan to sort of flip the model here. And instead of talking about impediments, talking about power, what do you do with that as one person?

Burtony: Okay, well as one person, what we do is that we shape the world sometimes in our own way. And now we have opened our eyes to the reality of things, we have to be change makers. We use this power to change things. We need to be part as well as, we need to be part of the solution. Sometimes we need to realize that we are part of the problem. Like in my country, persons or disabilities are not united.

If we would have been united, and if we would have spoken with one united voice, our power and strength would have helped us to go at [inaudible] and would have helped the politicians understand that we need a disability rights act in Mauritius.

Miller: Aarthi, Can you give us a sense for what the workshops you’ve been taking part in the program has actually looked like, What have you been doing?

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Burtony: Oh, we’ve been doing so many activities. It’s not only an indoor workshop where you sit in a building and you have different speakers coming every day and you share ideas, and they give us information and that we will take back home. We also have lots of outdoor activities. We are really exposed to, what the American with Disabilities Act has really brought as change in the country for persons with disabilities who have been exposed to the Individuals with Disabilities Education Act. So visiting those places and experiencing, like next Saturday we will be at the swimming pool, [seeing] how accessible those places are. And the physical access as well as emotional access is really important.

So, we have been participating in those activities indoor and outdoor just to — not only expose us to what it should be like — it’s not a dream line because, as some speakers pointed out last Monday during our workshop on legislation, policy, advocacy — there is no, I think, dream line for persons with disabilities, there’s still room for improvement.

Still we have been exposed to the positive aspect of it and I think that is the most important. We need to stop at what is positive, and take it back with us and make use of it.

Miller: Susan Sygall, as we’re hearing from, from Aarthi Burtony. This is not just about classroom learning. There’s a self-defense workshop and a physical challenge course. What’s the idea behind all of these much more physical classes or experiences -- in a workshop that the overall point of which is to foster leadership and activists?

Sygall: Yes, well, for instance, you know, talking about self defense. I mean there is, I mean so much more so much gender based violence against disabled women. So we’re going to have the afternoon after, you know, how to use your wheelchair as a shield. How do you use your cane if you’re deaf? How do you how do you stay safe? So that not only is a very real skill in people’s everyday life, but it also, it’s how you move, how you portray confidence that I think is important. And then things like the challenge course where the women, no matter what their disabilities have the possibility of going up like 40 ft in the air, you know, with of course, lots of safety climbing equipment.

You know, for me it’s sort of a metaphor. Like you are going beyond your own preconceived notions of what is possible. You thought I’m quadriplegic, how am I possibly going to go 40ft in the air, but it’s possible. So then perhaps when you go back to your countries or wherever you are and someone says, no, disabled women can’t do that or no, you can’t be included in the regular classroom or go to the university or whatever it is, it’s a metaphor for don’t let either your own preconceived ideas or other people’s preconceived ideas of what’s possible stop you, you make your own decisions, you forge forward.

Miller: If you’re just tuning in, we’re talking right now about WILD, the Women’s Institute on Leadership and disability. It’s a three-week conference, it’s happening right now in Eugene. Aarthi Burtony is one of the participants. She’s a disability rights activist from Mauritius. Susan Sygall is the CEO and co-founder of the Eugene-based nonprofit Mobility International USA.

Aarthi, one of the first words that Susan used to describe one of the Great Goals of this conference is solidarity. I’m curious what it has been like for you to spend time and to get to know women from all over the world who are also advocating in their own ways for the rights of women with disabilities.

Burtony: Solidarity is the key word in everything we do in life. And what is amazing,  just like relating to yesterday’s event, we were we were to walk on the road to cross the streets every day. We are taking the bus. And that is a wonderful experience, to simply take the bus as a person with visual impairment for in my country, taking the bus alone is something we wouldn’t even think of because it is just inaccessible transportation system.

So, while walking down the street from where we’re having our workshop at S. Mary’s Church to the bus station, imagine who guided me. It was a lady with hearing impairment from the Philippines. So if it is not solidarity to have a lady with hearing impairment guiding me as a blind, what else could it be?

So, I mean, I’m experiencing solidarity across disability and yesterday when the ladies in my group, we were trying the to play the rugby ball on wheelchair. I had thought at the beginning that maybe I wouldn’t be participating, given that I’m not a person with a physical impairment in the sense that I’m not a wheelchair rider, but I am a blind person.

But finally, they included me in the game with one of the main staff pushing the wheelchair I was using, and they were shouting for my name when they wanted to have the ball for me and they were even throwing the ball at me for me to catch it. So this solidarity across disability, it is the first time in my life that I am experiencing this.

So this is a wonderful experience. Now I can go back to my country and tell them, women with disabilities with different type of the disabilities, we don’t have to be segregated. Like in my country, the National Institution for the Blind has a women’s wing. And the women’s wing consists of essentially women with visual impairment, whereas at the level of the Women’s Disabilities Forum, which is a national forum, there would be mostly women with physical impairment. So this I think is not 100% good.

Miller: It just it just creates silos, separating people.

Burtony: Yes, segregation within disability institutions. I think that this should stop now.

Miller: Susan the participants in this program, the way you’ve engineered this, they stay with families in Eugene. They’re not staying in empty college dorms or in hotel rooms. They’re spending most of their time with just families in the area. Why structure the program that way?

Sygall: Right. Well, I think it’s perhaps one of the most powerful parts of the programs is for, as as Aarthi was just saying, you know, suddenly, you know, you may not speak English. Some of our participants were translated into Spanish, into sign language into an international kind of sign language. And suddenly there you are with the homestay family who might not know your language at all. But it’s a way to figure out how you can be a citizen diplomat. How do you communicate with people from another culture who may not even know your language?

And what better way to learn about the United States and to share cultures than to live with the family? And so I think that it’s just a whole other level of cross cultural communication and building a sort of a global community.

And I also think that, I know that many of the families will then continue their friendship, continue their relationships. I mean the last day there’s so many hugs and tears and things like that. So suddenly you’re in the United States and you’ve got another family right here in Eugene, Oregon.

Miller: Aarthi, what has your home state been like?

Burtony: Oh, it has been wonderful. They are giving me so much love and care. Jim and Deb are wonderful people. Actually I love them to be so straightforward to consider me and treat me as a normal person, even though they don’t forget that I have a visual impairment.

Like for the first time I went into the house, they knew that I can walk on my own, navigate on my own in the house from the moment I am oriented. So what Deb did she was orienting me, show me showing me how things are in her house, where would be my room, where is the living room, the kitchen and everything so that I can manage the space on my own.

And on the very first day I knew that I would be feeling so at ease in the house. And yeah, they are giving so much love, so much care and guidance and indication about how things are in the country. I’m having passionate discussion conversations with them. It’s really wonderful beyond expectation.

Miller: Susan, this is uh this was started 25 years ago, as you noted, it’s not every year, but it’s happened a lot —  hundreds of participants now who have, for the most part, they go back to their home countries. How do you measure the impact of a program like this?

Sygall: Yes. Well it is, it’s quite amazing. We actually, what we say is we have WILD women in 89 countries around the world. And we continue to hear from them, and we hear about their accomplishments. One of our WILD women, who is also wheelchair rider, became the Minister of Social Affairs for a while in Armenia. Another WILD woman, you know, got accessible buses in Vietnam. Other WILD women have, you know, run for public office, and one run for mayor in Sri Lanka.

So whether there are these big accomplishments or making changes, getting disabled kids in schools, starting their own organizations, starting independent living centers in Armenia, we are seeing the impact. And we are hearing, you know, from these WILD women from like 1997, and there seems to be a solidarity.

So now we’ll have a few WILD women in, in Kenya, a few WILD women, you know, in Costa Rica. But anytime we say, you know, let’s have a reunion, whether it’s a virtual reunion. I mean, the WILD women just say from all over the world, I’m a WILD woman here, the changes that we’re making. And they feel this sense of sisterhood and you know, I’ve always got like tears in my eyes. This solidarity is just, it’s life changing,

Miller: Aarthi, what do you think you’ll most remember from your time in Eugene?

Burtony: I have yet like 1 and a half weeks to go. I don’t know what would be my most important souvenir from the time I would leave. But for the time being, what has been most important for me is to accept the fact that the situation is like this in my country and also to acknowledge that the change should come from me.

Miller: Arthuis Bertoni and Susan Sygall, thanks very much.

Susan Sygall: Thank you. It’s my pleasure.

Burtony: Thanks to you.

Susan Sygall: Thank you so much.

Miller: Aarthi Burtony is a disability rights activist from Mauritius, taking part in the WILD program that’s happening right now in Eugene. They’re about halfway through. Susan Sygall is the CEO and co- founder of Mobility International USA. It’s the Eugene-based nonprofit that created this WILD program.

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