Disability Rights with Susan Sygall of Mobility International
Kellogg Fellow is Passionate about Supporting Human Rights of All
Working for the rights of all with disabilities is important for Susan Sygall. The CEO and co-founder of Mobility International USA is a wheelchair rider, author, lecturer and passionate disability rights activist. She has edited and authored several publications to advance the rights of persons with disabilities around the world.
Sygall has received numerous awards and distinctions in recognition of her work, including the prestigious MacArthur Fellowship, Ashoka Fellowship, Rotary Scholarship Alumni Award, Jewish Women International’s Women to Watch Award, Kellogg Fellows Leadership Alliance’s Matusak Courageous Leadership Award, the “President’s Award” from the Honorable Bill Clinton and honorary doctorates from Chapman University and the University of Portland.
Leadership Matters Live with Susan Sygall
Susan Sygall joined KFLA’s Leadership Matters for a live dialogue on Building a Global Movement for Inclusiveness.
Watch the video of this live event here.
Susan Sygall Speaks about Disability Rights and Leadership
One of the ways MIUSA describes its work is to advance disability rights and leadership globally and to “create a new era where people with disabilities will take their rightful place in the world community.” What does this look like?
We were created in 1981 to operate our own leadership program, which is focused on disability rights and leadership. We have more than 2,500 people from more than 136 countries, who have graduated from our program. That’s one way we’ve been advancing disability rights.
We’re also working hard to ensure that people with disabilities of all types have been included in all existing leadership programs, exchange programs or international development programs throughout the world.
A third focus is on women with disabilities, and we run a signature program called Women’s Institute on Leadership and Disability (WILD). We’ve had more than 260 women from 83 countries go through that program.
Why is a human rights-based approach so central to your work?
Historically in the United States and globally, people have looked at disabilities as a medical problem — as people who needed help, charity or cures. Many of the policies have been framed around that model.
The human rights model focuses on the fact that the problem isn’t the person’s disability. The problem is there aren’t adequate physical access, communication support or materials in accessible formats (also called alternative formats) such as Braille. So, it becomes clear that to solve the issues you need a human rights approach, which is based on disabilities being a positive part of somebody’s culture and identity. You need to provide proper accommodations to ensure their rights.
It’s not enough to say everyone is welcome. Everybody is only welcome if the place is accessible with sign language interpreters, or support for people who might need personal assistance. You have to make the playing field equal, if you want to say everyone is welcome and included.
From your time in the early disability rights movement to your time as CEO and co-founder of Mobility International USA, how would you assess the progress that has been made?
We’ve definitely made some big strides. For me, the Americans with Disabilities Act is probably the strongest piece of legislation based on a civil and human rights model that exists in the world today.
It has teeth. There are very specific regulations and consequences. So, that’s one of the most significant achievements that has happened.
Around the world, things are getting better, because people with disabilities have organized their own groups. That has made a big difference. We’re seeing that passion, sophistication and knowledge sharing, made possible by the Internet, is allowing the movement — and disabled people between nations — to work more effectively together.
So, there has been progress. But I’m still appalled at places, including the United States and throughout the world, where much work still needs to happen.
What are the most important challenges that remain or that people are not discussing?
One thing high on the agenda is to be sure people with all types of disabilities are included in the existing programs. All the Kellogg leadership programs. All the scholarship programs.
When I was at the KFLA Global Summit on Food Security, there were many leadership programs represented, but there weren’t many people with disabilities included.
We need to make sure that people with disabilities have the same opportunities to enroll in these programs. The inclusion of people with disabilities in different programs — whether they are leadership, international exchange, international development or political groups — is very important.
The other priority is to have specific programs that build the pipeline of leaders with disabilities. All of us, myself included, who had the honor and privilege of being in a Kellogg Fellowship saw it trampoline me and others in their careers. That’s why I want to make sure there are programs for people with disabilities, specifically on disability rights, but also that people with disabilities get to take part in all types of programs.
When disabled people are part of these leadership programs, other attendees become more aware of the issues specific to people with disabilities. That makes them better leaders.
How does your work intersect other movements, such as gender, economic or racial equity?
Mobility International is known for our women’s program called WILD. This brings together 22 disabled women from 22 countries. WILD started because in 1995, we went to the UN Fourth World Conference, sponsored by the World Health Organization, in Beijing where Hillary Clinton spoke.
We organized a summit the day before for disabled women from around the world to talk about the need for a disabled women’s movement. We wanted to infiltrate the women’s movement and make sure that disabled women’s issues were an integral part of all women’s issues.
After the Beijing conference, we created our WILD program. Now we’re planning to attend the regional follow-up to the Beijing conference 25 years later with some women from that area.
Over the years, WILD materials have been translated into Spanish, Arabic, French and American Sign Language. We use certified deaf interpreters; there’s no global sign language. Once the women participate in the training, they are given small grants to do their programs locally. I’m just in awe. The future is in good hands, because of the passion of these women.
So, the women’s movement is definitely one of the movements we need to think about with intersectionality.
I’ve always thought the environmental movement was a natural. People talk about things being green and sustainable. Wouldn’t it be great when we talked about a green building that we also talked about accessibility issues? No building should be verified green if it doesn’t meet all the highest standards for accessibility for disabled people.
When we talk about diversity, let’s make sure disability is part of this diversity discussion. People with disabilities have many different identities. A person of color can have a disability. A member of the LGBT community can have a disability, as can a refugee. Intersectionality is a way to get different movements to work together. It’s important to remember that people often have several issues they are addressing.
You lead a deeply diverse, cross-cultural, cross-disability organization. What has that meant for you as a leader?
I face the same challenges as many leaders of non-profits. How to think strategically and have the greatest impact. How to make changes with limited resources. We’ve had to piece together funding, because no one was doing training for women with disabilities run by disabled women. So, we had to get funding from different sources.
I’ve been fortunate that I’m surrounded by amazing staff, along with Kellogg and McArthur Fellowships. It has been wonderful to be surrounded by people who have dedicated their lives to working for social change. Being surrounded by like-minded people, who are passionate and persistent, is part of what is needed to be a good leader.
What gives you hope? What keeps you motivated to continue working?
What keeps me motivated is that we know how to make things equal. We know how to create jobs for disabled people. We know how to make buildings accessible. We know how to include disabled children in everything from early child education to a post-doctoral degree. We know how to make the world so that people with disabilities have the same rights and opportunities. So, why is it taking so long, and why don’t we do it?
For me, it feels within grasp. It’s a constant passion to get that for everybody. In some parts of the world, people with disabilities have rights. But everybody should have them. And we know how to do it.
The other thing that keeps me motivated is meeting people with disabilities from around the world, and the allies. There are many allies. They are people who don’t have disabilities, but really understand from a rights-based perspective and are doing their part. That keeps me motivated. I keep working for change.
How did your Kellogg Fellowship affect your work today? How did you benefit from the experience?
It was fabulous. I was in the Kellogg National Leadership Program — Class 7. This was a rather volatile group with people of different opinions. It was good to hear all of them. I’m still in contact with members of the group.
This Kellogg Fellowship gave us a way to pursue things outside our comfort zones and see how everything is interconnected. It created a great environment for people who wanted to lead, and there were all kinds of different leaders. When I organize our leadership programs now, I hope I create that same type of environment.
In 2011, you received the Kellogg Fellows Leadership Alliance Matusak Courageous Leadership Award. In 2018, you presented it to fellow advocate and friend Santiago Valazquez Duarte. How did it feel to be recognized in this way?
That was such a highlight. I was honored and thrilled to receive this recognition from my peers, other Kellogg Fellows. The award sits on my desk today.
It was a beautiful moment, and I was very grateful. The only thing that could have surpassed that feeling was being in Atlanta and presenting that award years later to a very good friend and colleague Santiago Valazquez Duarte. (Watch here.) I think he is doing amazing work, and I’m in awe of the success of his efforts. I couldn’t even put into words how it felt to hear Santiago give such a powerful, moving talk when he received the award.
It was great to see disability rights and leadership being recognized. Now I hope that KFLA and the Kellogg Foundation will become a leader in disability rights and leadership. And that they will help ensure the inclusion of people with disabilities in other leadership organizations. That’s the only way we are going to build the pipeline of leaders to make the change that needs to happen.
How can Kellogg Fellows and others support your work? In addition to your website, how can they learn more about your work?
You can learn about our work at our website.
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