User1st’s Spotlight interviews highlight individuals who have advanced the rights, opportunities and boundaries of what was thought possible for individuals with disabilities.

This interview format offers insight about the lives, experiences and contributions of those who look to advance the presence of persons with disabilities in mainstream society.

This feature is on Judith Heumann. Judith Heumann is an internationally recognized leader in the disability community and independent living movement, which aims to advance equal opportunities, self-determination, and self-respect among individuals with disabilities.

Having spent most of her life in a wheelchair as a result of contracting polio at 18 months old, Ms. Heumann’s personal experiences have played a major role in her commitment to disability rights. Ms. Heumann is a founder of Disabled in Action, a civil rights organization committed to ending discrimination against people with disabilities, and a co-founder of the World Institute on Disability.

Ms. Heumann’s extensive career has allowed her to make lasting contributions to governments and NGOs, including the World Bank, Center for Independent Living, and the Senate Committee on Labor and Public Welfare. Most recently, Ms. Heumann served as Special Advisor for International Disability Rights for the U.S. State Department under President Barack Obama.

User1st: Hi Ms. Heumann, thank you for agreeing to be interviewed. Can you give us a little background on yourself?

Judith Heumann: I was born in 1947 to German Jewish immigrants. My parents left Germany in the 1930s when they were teenagers. I was born in Philadelphia and moved to Brooklyn when I was three months old and grew up there—I was the oldest of three children. My father was a butcher and he and my uncle owned a small butcher store. My mom and my aunt worked part-time for them and we lived in a middle-working class neighborhood in East Flatbush, Brooklyn, New York. We went to a small synagogue there that was made up of friends and family, which still exists today and was started by one of my relatives. I am 69 years old now.

When I was growing up, as far as what I wanted to be, I wanted to be a teacher from early on, but one of the issues for me was that I had Polio when I was very young and there were very few role models and people that people talked about the jobs that disabled people get. I guess one prominent role model was President Franklin Roosevelt, but being a young girl and then woman at the time, being President didn’t cross my mind, but teaching was something that I was always interested in, as well as theater.

I think that the issue of advocacy resulted in my wanting to move into an area where I could work on social change, and teaching definitely was something that became more of an interest in me as I moved through high school.

User1st: What was it in high school that pushed you into wanting to focus on advocacy?

Judith Heumann: It was basically because of the barriers that my friends and I were experiencing. I was growing up in the 60s, where social movements were very prominent in the U.S—Civil rights movements, women’s rights movement, aging movement, and the anti-war movement. I went to Long Island University in Brooklyn, and I went to high school in Brooklyn, and I guess activism was in the air is how I would put it. I found myself frequently feeling compelled to do or say, or do and say things to try to correct problems.

On the one hand, it was something that was natural for me to be doing—my mother likewise learned to become an advocate when I first had polio. My father also was one—they both learned as barriers came up, like my denial to go to school. My mother needed to learn to become an advocate for me in a way that she didn’t need to for my brothers. My father was working but he was certainly supportive of what my mom was doing. It was kind of like a passing of the torch in a way. As I got older, I felt I had a responsibility to advocate for myself and others.

User1st: You’ve had a very extensive career and worked with a number different organizations. How have the views of disability changed over time, if at all?

Judith Heumann: Partly what we’ve seen over the years is a growing movement of disabled individuals and families supporting legislation that needed to be developed and effectively implemented because the barriers we were experiencing were not just barriers on people’s lack of knowledge, but in many cases, were based on discrimination. So the need to be able to develop laws that would make it illegal to discriminate has been critical.

Getting those laws written, passed, and implemented are the next steps once you make the case that it was necessary to address discrimination with steps that governments, civil society, businesses, etc. can implement. In the case of disabled people, because we’re dealing with such a vast array of people with many different types of disabilities, I think it was both a challenge and a real opportunity, as people who may not have someone with a disability when they were younger but knew someone who was becoming older.

You have two types of groups: people who are in their 60s, 70s, 80s, 90s, who are not necessarily technologically-savvy, and those that are joining those age groups that are. With that audience—people who are knowledgeable and dependent on technology—we need to ensure that technology is accessible. This is an opportunity for us to drive a message to businesses that there are a huge number of people, not just in western countries but across the world, because things like cell phones are being used across the world. I think the marketplace is one of the exploding areas, and one of the ways for businesses to see that this is an opportunity. The whole context of universal design is becoming apparent that people need to be focusing on—when we first started much of these activities, we were looking at people who had physical disabilities as well as some with sensory disabilities. But a large number of those individuals, for some reason, haven’t been actively involved in the political movement, but clearly benefit from the impact of effective legislation and implementation.

We’re looking at WCAG 2.0 AA standards, but then we’re also looking at very basic things like how our streets are, whether there are buses and trains that are not just accessible for people with obvious disabilities, but also for people who are becoming older or have a temporary disability, or who have a baby, or any number of reasons why accessibility will benefit a much broader population than people originally thought. One of the other issues in the area of disability is the old medical model of looking at disabled people as hopeless and helpless—the system and the environment we lived in precluded us from participating. As those barriers are removed, the statements we made, which is that we not only can, but want to be able to participate and contributing to our communities, are becoming real. People previously, from my generation, were unable to go to school for example, because so many technologies we have today did not exist. Attitudes change slowly, people’s views on disabled people, from our perspective are changing slower than the laws.

One would hope, but of course this is not reality—whether for race, gender, disability or sexual orientation, that having a law which was created because you were able to demonstrate that there was significant discrimination and need legislation to correct it—that change would come about quickly, but in the area of disability, like race and other areas, we’ve grown up in societies for millennium where people have been excluded.

Exclusion to me is the biggest barrier, because exclusion enables people to not factually address issues. When you don’t touch, smell, feel—break bread together—you hear myths about people if you are surrounded by people who may be discriminating against one or more people. You don’t really get to learn about both individuals and groups of people that are directly affected by these beliefs. So just making changes in laws does not necessarily change people’s view.

For me, I’ve always believed we need strong laws because the laws remove barriers which then enable us then to be able to participate in society. And hopefully one of the benefits of our participation in society is to change people’s views about what they think about us individually as well as collectively. But, as I’ve been saying, it takes much longer. Having an accessible bus let me get to work, visit friends, stores, things of that nature, so people learn slower, but I don’t have to keep my life at such a slow pace, I can really speed it up and I have laws that allow me to demand my rights.

User1st: What type of impact do you think the internet has had on the disabled community?

Judith Heumann:  I think a couple things: one is that there is still a disproportionate number of disabled people who don’t have access to technology or to the internet, so that’s an issue that continues. Obviously, accessible technology and the Internet, for those who have access to it, has been incredibly enabling—that’s why work that companies like yours are doing is very important, because it enables other companies to learn about what they need to do in order to remove barriers.

As those barriers fall and more people gain access to technology and the internet, then the same benefits will be given to disabled people as non-disabled people—an opportunity to engage with people around the world, through social media, to learn about the technology that’s out there, to learn about how people are addressing issues of discrimination and to also enable people to become individually empowered and the opportunity to work with others as these advancement continues to occur. But what I think is important is that disabled people as individuals need to believe that we have the same rights as other individuals, and we have the right to live in societies that don’t discriminate based on our disabilities. Over time, I think we’ve seen very positive changes, clearly in countries like the US where our laws have been coming into play since the late 1960s and 70s, we’ve seen progress. Although, it’s very interesting, as I’ve been saying, that progress doesn’t come as quickly as you’d like because there are many people to educate, literally educate. Teachers for example, need to be educated to ensure that they are effectively working with students who have different learning styles, and that takes time—people need to learn, to practice, to become experienced.

The built environment, in many ways, is the easiest to be addressing because you’re building a street, a building, even technology—you’re building something which is concrete. Things like teaching, working with employers, getting employers to understand what accommodations are and how many people with disabilities don’t need accommodations, that most accommodations are not costly. There are too many employers who are fearful of hiring disabled individuals, and I think that’s because they don’t view disabled people as non-disabled people, in as much as any employer has good hiring practices from the beginning.

You need to do your best to ensure that you’re not hiring people that you know will not work in your company. If you’re really using good practices for hiring people, then hiring a disabled person or a non-disabled person shouldn’t be any different. We joke in the community that if an employer hires a non-disabled person that doesn’t work out and they have to let that person go, does that mean that they’re not going to hire a non-disabled person again? Because if they hire a disabled person and that person doesn’t work out, frequently employers are reluctant to hire another person who may have a disability.

User1st: What do you consider your greatest professional accomplishment to date?

Judith Heumann: I think that one of the accomplishments I feel I’ve been making is helping people who are working, who don’t have disabilities necessarily, put a disability lens on. When I worked at the Department of Education, the World Bank, State Department, non-profit world—in all these cases, what I was looking at was how do we remove barriers that are precluding disabled people from being appropriately integrated into whatever the work is. At the Department of Education, for example, when I was an assistant secretary there, working with the Office of Higher Education, vocational education, and bilingual education, to help people understand, for example, that there are bilingual, disabled individuals who need to be able to benefit from the programs that are being setup for bilingual students. How do you do that? What additional things need to occur to assure that a student who is bilingual and deaf or blind or has a physical disability or an emotional disability, or sensory disability, is benefitting from bilingual education? Likewise, in the area of vocational education—are the facilities accessible? Are students with disabilities recruited into the programs, do people need to learn about making appropriate accommodations for individuals with disabilities? How do you make that happen?

When I worked at Berkeley at the Center for Independent Living we had a program that helped disabled individuals get housing. One of the reasons we were doing that was because the organizations that were serving other people in the community who were poor, helping them find housing, were not knowledgeable about how to work with individuals who had disabilities and were poor. One of our objectives that they successfully addressed was working with those other organizations to give them a better understanding of both what their legal obligations were, but most importantly, what they needed to do to make their programs accessible so that a disabled person looking for accessible housing could go to those organizations for assistance.

Another area that has been important is looking at issues of violence against individuals with disabilities in shelters, for example, and whether those shelters are accessible, and helping to ensure that the disability lens is put on those programs so that people remove the physical barriers, attitudinal barriers, knowledge barriers to ensure that disabled individuals who are victims of crime can get the same protections as others. Helping people learn how to put a disability lens on their work, whether at the local, county, state, national, international level has been very important.

Another area I feel I have been playing an important role in is working with disabled people in the US and around the world on the whole issue of advocacy, empowerment and procurement of knowledge. People need to have knowledge on what the laws look like, how we work with our governments, how we work on implementation of laws so that we can be progressing. What we’ve learned in the US is if we had to start all over again, how would we do things better? How would we work on coalition development, working with legislators in the business community, etc. We all have knowledge to share and I think my work as a disabled person working with the disabled community has been very important to me to expand the number of voices of people around the world who feel empowered and feel that they have a right and work collaboratively with others to demand change.

User1st: What can the average person interested in contributing to the rights of persons with disabilities do to help further the cause?

Judith Heumann: They need to look at themselves, they need to look at what their biases may be, what they’ve been doing to erect or not remove barriers. We are very much inculcated in what I call the medical model—people look at disability as something that needs to be cured and in many cases don’t realize that we as disabled people want to live our lives. Glasses were invented and in countries where children don’t have glasses you have a much higher rate of people who are considered blind. Or where hearing aids aren’t available, you have higher incidences of people who are deaf or hard-of-hearing, or with braces, crutches, or wheelchairs, people have much greater limitations. Once people get the technology that they need, it allows them to move forward to participate in society.

I think the non-disabled world needs to look at how could they be playing a different role in their community, in their businesses—if they’re a manager, what are they doing to ensure that disabled people see themselves as being welcome to apply to jobs. If they’re an owner of a business, what are they doing to ensure that they are outreaching to the disabled community to bring people in. If they’re a neighbor, what barriers do they have in their homes that prevent people from participating—are they friends with people, do they reach out to people, are they uncomfortable with people who have various forms of disability? Religious life—there’s a big movement in the Jewish community, as well as other religions, to look at what barriers exist within our institutions, what needs to be done to be a truly inclusive environment, which goes way beyond the topic of physical environment.

Simply put, people need to look at themselves, they need to examine whether they are looking at disabled people as being equal to them and if not, they need to look at why that’s so. Talk to people, become engaged with disabled people, read books on disability life.