Susan Sygall is a disability rights advocate and activist. She has somewhat of a unique perspective on disability, because she was born able-bodied and became paraplegic after a car accident when she was 18 years old. Before the accident, Susan’s life was full of sports—she played Frisbee and basketball, went on hikes, biked and ran. Rehab was hard physically, but mainly emotionally—coming to terms with her paraplegia. If you were in her place, what would you do? Would you break down and cry, thinking something like “woe is me, my life is over”?
Susan didn’t. She learned to think of her life before the crash as a differ- ent life; as she writes in her memoir No Ordinary Days: A journey of activism, globe-trotting and unexpected pleasures, “That life is over. This lifeis here. They are separate.” (page 22). She became an activist for people with disabilities, founding Mobility International, USA (MIUSA) in Eugene, Oregon, in 1981.
Although Susan’s two lives were separate, there were still commonalities linking them, like a love of travel, passion for disability rights and women’s empowerment, and her Jewish faith. As it turns out, we can learn a lot from her story.
When you’re passionately fighting for a group’s rights like Susan is, you can approach this task as either an advocate or an activist. Susan Sygall has been both.
Let’s dig into these words a bit. Both have enough commonalities that people use them interchangeably, but are they actually the same?
They’re related, but not interchangeable. Advocacy is when you raise awareness about an issue and suggest solutions, where both sides amicably and civilly have their thoughts heard; one example I can think of is the Lorax speaking for the trees in the Dr. Suess book (and movie) of the same name. Activism is when you do something more than that to create social or political change, like marches, sit-ins or protests; one side talks, sometimes loudly, and the other side listens (or doesn’t, if you use the wrong tactics). There’s a difference in how far each goes, but there’s also another difference, in Susan’s opinion: advocacy is something you do, but activism is something you are.
Rather than focus on the distinction between activism and advocacy, she chooses to focus on the variety of tactics we can use to create social or political change,“So, I feel everyone, especially when you talk so much now about identity, I think everyone chooses their own words and their own identity, so I am a little hesitant to separate one from the other. But I think we try to talk a lot about how, especially around the world, there are different ways to be an activist. Like here [in the USA], you can form relationships with people, you can write letters, you can do protests, you can pass legislation, you can sue people, you can form partnerships with people, there are lots of different ways of being an activist and I think the art is to know which tactic to use when.”
Susan does a lot of advocating and activizing, thanks in large part to MIUSA. Their mission is "To empower people with disabilities around the world to achieve their human rights through international exchange and international development. To ensure a just, accessible and inclusive community in which the human rights, citizenship, contribution and potential of people with disabilities are respected and celebrated." MIUSA has a program called WILD (Women’s Institute on Leadership and Disability) that works to empower women. They also focus on sharing ways people with disabilities can engage in work more globally with their National Clearinghouse on Disability Exchange. Both of these goals take a global approach, trying to give people with disabilities across the world the same rights as those in the US.
Susan travels the world to advance disability rights, something she’s passionate about. She explains that in every country, despite the differences in political and economic systems, discrimination exists. The work she does with MIUSA is meant to “share our experience, what happened here (in the USA), what worked, what didn’t work, and then let the people with disabilities be the experts in what they need to do.”
She received the President’s Award from Bill Clinton in 1995, a MacArthur Fellowship in 2000, the Kellogg Fellowship, and the Henry Viscardi Achievement Award in 2014, all for her work in disability rights. Receiving these, she says, was a great honor; the MacArthur Fellowship gave her the amazing opportunity to come together with other award recipients at various reunions—“scientists, playwrights, artists, and many amazing people.”
She’s done, and continues to do, a lot to promote social change. She participated in the Section 504 sit-in at San Francisco's federal Department of Health, Education and Welfare building in 1977, and today she gives lectures and speeches with the goal of furthering disability rights and women’s empowerment around the globe. Like I said, she’s been both an activist and an advocate. Thanks to MIUSA, thousands of advocates and activists from around the world have come together to learn about movement-building and making positive change in their home country. Susan says, “we talk a lot about people with disabilities in different countries, that the people with disabilities—the blind people, the deaf people and the people with mental health disabilities—all have to work together and sometimes work united; you have to have this cross-disability coalition, which in some countries is still a new idea. You have to form allies with other groups, whether it's the LGBTQ group, or the Labor Union, or the women’s movement, or the human rights movement.”
MIUSA’s not alone; Susan says that “There are disability rights groups working to make change in every country in the world.”
Activism and advocacy aren’t just for big-name celebrities or famous people, anyone can call themselves one. But calling yourself something is different from doing or being that thing—how can we encourage the average person to be an advocate or activist for a cause? Well, in Susan’s opinion, we need to “plant the seeds for people to think globally,” meaning that in addition to thinking about “what can I do at the local level to further disability rights or whatever cause I’m passionate about,” also thinking about “what can I do in other countries around the world?”
Susan “would just love to see more disabled people just thinking about, in addition to all the great work happening in the US, how to make connections with disabled people's organizations in other countries, and how to be more connected, [think] more globally.”
Using disability rights as an example, it can be important to think about the local issues, not just global ones—Susan gave the example of a pizza place in Eugene, Oregon. The staff said there was an accessible bathroom, but she noted that there were only stairs, no wheelchair ramp. She invited the mayor out for pizza and got out of her wheelchair to crawl up the stairs to illustrate a point. Soon after, a wheelchair ramp was added in. Even though Susan’s focus is on international-level change for disability rights, she views her activism as something she does 24/7. She says, “I want disabled people to really go after their dreams in the same ways a non-disabled person would. And you have to realize I'm a person who became disabled at 18, I grew up non-disabled, so I do not expect anything less than what non-disabled people have, not even for one second, so I'm going straight for the positive: ‘of course you should go after all this. Why wouldn't you?’”
In addition to having both “righteous anger” and “joyful optimism,” she also says that “whether you are advocating or being an activist ... [you should have] a Rights-Bearing Attitude [a term she learned from Pat Wright at the Disability Rights Education & Defense Fund]. And I think that is something that is important. You have to know it not only in your head that you have a right to all the things that non-disabled people have, but you also have to feel it in your heart.”
The long and short of it is we need to know the many different tactics we can use to create social change, and understand when to use each one. We should keep in mind great change can happen when we work together, talking and listening to each other and moving toward a better future.