Susan Sygall

CEO and co-founder | Mobility International USA

CV in brief:     Education:  UC Berkeley   Find Susan online:   MIUSA profile  |  Wikipedia    Exclusive interview by Lucie Goulet, December 2017

CV in brief: 

Education: UC Berkeley

Find Susan online: MIUSA profile | Wikipedia

Exclusive interview by Lucie Goulet, December 2017

What do you do? 

I'm the CEO and the co-founder of Mobility International USA (MIUSA). We empower people with disabilities to achieve their human rights in two ways: through international exchange and through international development. Our tagline is “Advancing disability rights and leadership globally.”®

We run our own leadership training programmes for people with disabilities around the world. We have about 2,300 alumni from over 135 countries. 

We also work in the field of international development. We have done programmes with the Department of State and with USAID to ensure that people with disabilities are included in all aspects of international development, not just as beneficiaries but also at the planning stage, as leaders and ensuring that people with disabilities are included.

As a wheelchair rider, I'm passionate about building the pipeline of women leaders with disabilities. We're known for our signature programme, the Women's Institute on Leadership and Disability (WILD), that has brought over 230 women from 83 countries for intensive leadership training so that they can take their rightful place as leaders. Next, we are doing a regional training in Sri Lanka. It’s a “train the trainer” programme, so the women go back to their communities and train other disabled woman and girls.

As a disabled woman activist and a feminist, I go to a lot of conferences in the disability arena, the international exchange arena and the international development arena and there are very few women who have apparent disabilities, in that field.

It's important to encourage girls and young women with disabilities to think about going into foreign policy because it's not until more disabled women are in those high-level leadership positions that we will actually see some real change.

How do you work with the State Department and USAID? 

With the State Department, we have funding to increase the number of people with disabilities in exchange programmes to build a pipeline of leaders with disabilities. We have grants to work with the governments, disabled organisations and civil society in Armenia, Peru, Guatemala, Mexico, Vietnam and Kenya to help them strengthen their disability rights and anti-discrimination laws and help them get disability rights and laws and policies implemented. 

With USAID, we worked in countries like Jordan to ensure that the development programmes are inclusive, again, working with governments, disabled people's organisations, and civil society. We had grant money to sponsor our women's international and disability project.

You're on the board of directors of InterAction. What does it entail? 

InterAction is an umbrella organisation of more than 170 US-based NGOs that work in the field of international development and humanitarian issues. We've been working for over 20 years to ensure that the issues of people with disabilities are included. We initiated some disability standards as part of membership standards, as well as a disability working group and disability inclusion award. We have just launched a membership initiative to ensure that all development programmes are inclusive of people with disabilities.

The initiative is called EDDI (Excellence in Development and Disability Inclusion) and we're starting to have organisations like Save the Children and Trickle Up join as members. We can connect them with our alumni leaders and help them be more inclusive.

What are the biggest door-stoppers to women with disabilities getting into foreign policy?

Two things come to mind. One is that historically, there have not been many role models. The number of disabled women in high-up leadership positions is few, so disabled girls don’t get to think: "Oh, there's somebody who's just like me who's in a high-up position.” We need to tell more stories, so young women and girls with disabilities will realize that these careers are open to them.

The other thing is that there is still discrimination out there about getting hired. There are preconceived notions of what people with disabilities can do, so often they might not feel that they're going to be moved up or even can enter that profession. We can't show that as much, unless they're doing something illegal, in which case that would be a lawsuit. We have to build a pipeline to encourage women to be in foreign policy. That’s why we encourage disabled women and girls to have an international exchange experience.

If a young woman or girl with a disability, at 15 years old, goes to Spain and studies Spanish, or goes and volunteers somewhere in Africa, or if she spends her junior year abroad, it will help her realise that it’s a field she can go in. 

Disabled women in the United States can get vocational rehabilitation to help pay for study abroad in college. Sometimes people get scholarships to go abroad. 

We teach a course at the University of Oregon on Global Perspectives on Disability. Sometimes we'll have someone in our course who is then inspired to pursue a career in the field.

Many of our alumni who went on international exchanges have gone one to earn a Master's in International Studies. Some are doing internships in the State Department. Slowly, that pipeline is getting bigger, but we need it to just be gigantic. We need a lot more young women to go into those fields.

Let's talk about your own career. You co-founded MIUSA. Why did you decide to create your own organisation?

When I was in my 20s, studying at UC Berkeley, I saw an ad in the paper that said: Be an Ambassador of Goodwill, all expenses paid. It was for a Rotary scholarship to study a year in Australia. I was only one of three disabled students at the University of Queensland, and I was the only international student with a disability.

I had an amazing year in Australia. I hitchhiked in my wheelchair through New Zealand and traveled by overland buses through Malaysia, Thailand and Indonesia. It started coming to my mind, as I was meeting new people while traveling, that people with disabilities needed a place to share stories and strategies on how to get their rights and to be included. I was thinking, "Where are all the disabled people? Why aren't more people studying abroad, and know then, this is possible?" I also felt that disabled people are part of a global family and we need to be united to share stories and information and strategies.

After my year of traveling, I came back, finished my master's and I co-founded MIUSA with Barbara Williams. I felt that this type of organisation didn't exist in the US. I had co-founded another nonprofit in Berkeley that was around recreation and sports for people with disabilities.

It's been an amazing experience and looking back, I never in my wildest dream could have dreamed of all the things that Mobility International USA has done with this amazing staff that we have. 

I want to encourage disabled women of all ages to get involved. We're seeing disabled women joining the Peace Corps, working in the U.S. State Department, working at the World Bank, going on exchanges, but most of the time when I'm at conferences, I rarely see another woman with a disability. We need to increase the numbers.

What is the most common concern that you find women with disabilities have and what do you say to that?

Women with disabilities are discriminated twice, once because they're women, another time because they're disabled. There isn't a sector that they're not discriminated against.

Women with disabilities also have two positive things going for them. One, they're women and we need more women in leadership positions. The second is that women with disabilities really have their own sisterhood.

The mantra for our women's leadership programme WILD is “Loud, Proud and Passionate.”® The women with disabilities that we see are incredible, resilient and working against huge odds. We want to instil that sense of pride to other disabled girls and women around the world. The Association for Women in Development had a conference in Brazil and there was about 30 disabled women activists there from around the world and thanks to many sponsors, that was the largest group of disabled women activists at an international women’s conference that I have ever seen.

Historically, disability organisations that consisted of both men and women have been run more by men. So many women around the world have formed their own organisations, run by and for disabled women. We have a wonderful woman, Karine, who's working in Armenia. She started her own disabled women's organisation and she's now working on legislation for disability rights law in Armenia. There are many stories of women getting up the leadership and then being able to work on huge policy issues for their country as leaders.

You've been working for disability rights for over 30 years. What is the biggest change you've seen during that time?\ 

The formation and the strengthening of the local disabled people's organisations (DPOs) and of local disabled women's organisations. I was in El Salvador where women who went on our WILD programme now run programmes in El Salvador, Panama and all over the world. They're their own organisations, they're getting their funding, they're running their own programmes and they are changing the paradigm so that disabled women and girls can grow up feeling proud of who they are and working to get their rights. There's still so much violence against disabled women and no access to healthcare but at least they're beginning to have their own voice to organise that. 

When I've been speaking lately, I've been talking about moving from inclusion to infiltration because people have talked about inclusion for many years, and it hasn’t happened as fast as it should be. We're using the term “infiltration” to tell disabled women that when they see a violence prevention programme, or an HIV prevention programme, or a literacy programme, or a health programme, they should demand that those are “their” programmes.

If these programmes don't have a sign language interpreter, aren’t in a wheelchair accessible place, don't have information in alternate formats for people who are blind or have visual disabilities, disabled women need to demand that those changes happen.

In the same way, we think that development organisations and NGOs who offer these things should do “reverse infiltration”. If they look at their programmes and they're not seeing disabled women and girls, they should seek them out and ask “Can you come and join us? What do we need to do to be more inclusive?" All of us should be working together as allies, and development and humanitarian organisations need to proactively go and seek out disabled women and include them as advisors, and hopefully get hired in some of their organisations.

Women around the world are growing up thinking about studying, having international experiences, and having this as a career. We need disabled women in foreign policy positions, because they can accelerate a change if they're in a leadership position and historically, they have not been.

If a disabled woman feels she is being discriminated because of her disability what do you advise her to do?

In the United States, if you're discriminated in any way, in employment or in getting accommodation at a university, you're covered under the Americans with Disabilities Act

We work with organisations that make sure the ADA is enforced. For instance, the Disability Rights Education and Defense Fund is helping people and organisations make sure that the ADA is enforced. They can put you in touch with local organisations that can help you as well.

Around the world, many countries have their own disabilities rights laws and so disabled women would need to contact disability organisations in their own country. There's almost no country in the world that doesn't have some kind of disability rights laws. The question is how well are they implemented and enforced? Many organisations have signed the United Nations’ Convention on the Rights of People with Disabilities and some people might be able to use that as a tool, in addition to legislation. Our companion website, Global Disability Rights Now, offers a wealth of resources for disability rights activists around the world about implementing disability rights legislation.

We talked about exchange programmes you run with MIUSA. How do they work? 

We run our own programmes, like WILD, but those are few and far between and we have 100s of applications for a few slots. 

That’s why we encourage people with disabilities to connect with the National Clearinghouse on Disability and Exchange, which is a project administered by Mobility International USA and sponsored by the U.S. Department of State. There are hundreds of exchange organisations that provide opportunities to volunteer abroad, or research abroad, teach abroad, or do professional exchanges, and the Clearinghouse works to ensure that people with disabilities are aware of those opportunities.

These are the same exchanges that non-disabled people do all the time, and we just have information on where to find them and what to do if you have any kind of disability. We offer tips on what you need to do if you're applying for those.

We have an online publication called the AWAY journal (All the World Awaits You). You can read about other people with disabilities who've had international experiences, the type of accommodations they received and what it was like to travel abroad with their disability, whether they are someone who is diabetic, blind, deaf, or uses a service dog. They've all been successful in their international experiences, so readers can discover their experiences. We also have podcasts about their stories.

Then if you're from outside the US and you're interested in coming to the US, for an educational experience with a disability, you can email us or look at our website. If you're from the US and you're interested in going abroad, you can also contact us.

You've mentioned being an ally a few times. What is the typical thing non-disabled people do that you wished we stopped doing?

Go and seek out women who have a disability and highlight their stories. Anyone in the field of foreign policy who feel like they have not thought about that as an issue, and not thought about the ramifications of including people with disabilities, go seek out some of the disabled women leaders to get more information about, "Here, I'm writing this article. I want to have another perspective."

When you work in a project, start a move to getting more disabled people at the table, who can then make sure that whatever policy you're working on, includes the perspective of disabled women. If you don't have that perspective, you have to seek it out through finding disabled leaders. 

So much change comes from forming relationships. During our WILD programme, we have a few days where we invite international development organisations and funders to meet with the 20 women with disabilities from around the world and we go to a retreat centre.

It's really forming relationships with these disabled women and saying, "What do we need to do to be more inclusive?" Disabled women from around the world can talk about that and hopefully start those connections. It's also for the women with disabilities because then we learn more about international development and about the whole field. Both sectors need to stop being in two separate silos and come together.

You've been doing what you do for 30 years and I can imagine sometimes it's really uplifting and sometimes there must be frustrations as well. Where do you find the strength and motivation to keep at it?

Recently, I was at an international development conference and I said, "Where are all the disabled people? Where are the young disabled leaders? Why are they not at this conference?" Sometimes that is a frustration and I'm hoping that that will start changing. 

The positive comes from our alumni from all over the world and to hear of them starting their own organisations and working in disability rights laws.

We are running a photo exhibit, “Brilliance and Resilience: Celebrating the Power of Disabled Women Activists” which has been exhibited at the World Bank and USAID in Mexico, El Salvador and Brazil. It’s going to Sri Lanka next. It features 30 disabled women from all around the world who are working on literacy, violence prevention, and inclusive education. That's the change that we've been working for and that's the change we're seeing. That's worth so much.

To be a leader, you have to see the frustrations and the discrimination of things that are still occurring, but at the same time you have to see the changes and the positive things that are happening, and have that fuel you to do more. I'm hoping that if all the people who read this, who are working in the field of foreign policy and international development, will contact us to see other avenues where we can really start opening this path up for more disabled women and girls.