New Mobility’s Person of the Year: Judith Heumann

The life and career of Judith Heumann — teacher, scholar, activist, diplomat — closely parallel the rise and growth of the American disability-rights movement.

Photo by Steven Voss

As a child disabled by polio, and as a wheelchair-using college graduate entering the workforce, she had to fight her native New York City’s school system for both the right to an education and the right to teach. During the 1970s she co-founded one of New York’s first disability activist groups, worked with Ed Roberts to launch the independent living movement in California, and helped organize the landmark Section 504 sit-ins of 1977. She assisted in crafting what was to become the Individuals with Disabilities Education Act and helped build bridges between activists and elected officials to smooth the way for passage of the Americans with Disabilities Act. Over the past four decades, Heumann has had a direct hand in improving access, integration and quality of life for all disabled Americans, and has served as a role model for a new generation of outspoken, well-educated and rights-minded people with disabilities.

Now, with her recent appointment to the U.S. State Department — as Special Advisor for International Disability Rights — Heumann has become an ambassador not just for the United States, but for the disability community throughout the world. Since taking on the position in June 2010, Heumann — already a seasoned traveler — has journeyed to numerous countries, exchanging ideas with both disabled and nondisabled leaders, and seeking to make sure the voices of people with disabilities are heard in an increasingly fast-moving and tightly knit global village.

For her unwavering commitment to secure equal rights for people with disabilities all over the world, New Mobility is proud to name Judith Heumann as our 2010 Person of the Year.

Disability Goes Global
When NM interviewed Heumann, she had just returned to Washington, D.C., from a whirlwind trip to four countries in Africa and the Middle East. In one of what will undoubtedly be many such trips, she met with government officials and disability organizations in Tunisia, Algeria, Jordan and Qatar.

“There are at least 650 million disabled individuals living around the world,” she says. The task before her is to “talk to people about who this population is, and discuss ways of integrating disability into [their countries’] broader agenda.”

Heumann’s appointment to the State Department last year came in conjunction with the announcement by President Obama that the United States would sign the United Nations Convention on the Rights of Persons with Disabilities. Adopted by the UN General Assembly in 2006, the convention is designed to promote the end of discrimination against disabled people worldwide and to ensure their full equality under the law. The convention currently has 147 countries as signatories; with Obama’s signature, the U.S. participation now depends on ratification by the Senate, which Heumann expects will take place in early 2011, regardless of the outcome of the November 2010 election and the current polarization in the American political arena. “Disability has been a bipartisan issue, historically,” she says. Internationally, “the United States has done good work [on disability issues] over the years — this will make us an even more meaningful player.”

The fact that so many countries have adopted the UN convention is a reflection of the growing global nature of the disability community. Spurred on by the Internet, better accessibility of travel and greater educational opportunities, people with disabilities around the globe are networking and organizing as never before. Heumann sees one of her roles as doing what she can to foster that process. “I’m trying to create linkages,” she says.

During Heumann’s trip to Jordan, “I participated in an all-day meeting led by local disability groups. About 240 disabled individuals and parents [of children with disabilities] turned out.” One important issue in Jordan — as in the U.S. — involves accessibility of the polls for the country’s upcoming elections. In response to advocacy by disability organizations, the Jordanian government promised to ensure that polls were accessible for people with hearing, visual and mobility impairments, and that those who required assistance with voting could bring a companion into the voting booth. “That’s a very big deal,” Heumann says.

Also while in Jordan, Heumann met with Omar Maani, the mayor of the capital city, Amman. “He’s very smart, very committed to making Amman a modern city.” In an ironically fitting opening to a discussion about access issues, Heumann and her staff had to bring portable ramps to surmount the steps into city hall. During the meeting and afterward, she put Maani in contact with the Mayor’s Office on Disability in Chicago, one of Amman’s sister cities. Two weeks after returning to D.C., Heumann received photos from Maani’s office of two new ramps just constructed at Amman’s city hall.

Although the issues facing disabled people have always transcended national boundaries, in many ways the U.S. disability movement has evolved separately, yet in parallel, with the rest of the disabled world. Leaders have always talked to each other, and U.S.-based organizations with a global perspective — such as the Oakland, Calif.-based World Institute on Disability and the D.C.-headquartered United States International Council on Disabilities — date back to the 1970s and 1980s, but the U.S. disability community has its own focus and its own issues, which it has pursued largely through legislation at home.

Heumann believes that may be changing. “We’re seeing a greater involvement by the disability community in the United States in international activities.” As examples, she cites the work of Whirlwind Wheelchair International in designing and building rugged and inexpensive chairs for use in developing countries, and of Mobility International USA in promoting participation by people with disabilities in international exchange programs.

Recent years, Heumann says, have seen the emergence of a new, adventurous and international-minded generation of disabled people — people with a yen for travel abroad and an eagerness to experience other cultures and other ways of living. “The younger generation is traveling more overseas — more and more universities have international programs. And vice versa, disabled young people from other countries are coming here.

“Disabled youth all around the world are increasing their impact,” Heumann says. “As youth with disabilities secure better education and move into the world of work, they have greater opportunities to contribute not just within the disability community, but to society overall.”

An Activist’s Life
In today’s world, it can be easy to forget how few rights people with disabilities had as recently as a half-century ago. In the 1950s, when Heumann was growing up in Brooklyn — the daughter of German-Jewish immigrants who saw education as a cornerstone of the American dream — a disabled child was lucky to stay out of an institution, much less go to school.

As it was, the principal of Heumann’s elementary school declared her and her wheelchair to be a “fire hazard” and relegated her to home instruction — an hourlong visit from a teacher, only twice a week.

In one of the canonical works of the disability rights movement, No Pity, author Joseph Shapiro describes the struggle that ensued:

Heumann’s mother … knew this was not a real education. Besides, her daughter was isolated and not making friends. Ilsa Heumann became a battler, emboldened by small victories, who fought to get Judy into a regular school.

In one of those small victories, Judy won the right to attend a school for disabled children — not a satisfactory outcome, but better than being excluded altogether. As Judy approached high school age, however, she and her mother saw another opportunity:

It was a city policy that when children in wheelchairs reached high school age they would return to their families for home instruction. … Banding together with other parents, Ilsa Heumann brought enough pressure on the school board that it reversed the policy. Judy Heumann entered high school in 1961, a time she remembers for the parallel efforts of black Americans to force their way into closed institutions.

Informed by her own experience with discrimination, Heumann in her college years became familiar with the many other protest movements roiling the nation during the 1960s — taking part in marches against the Vietnam War and demonstrating for the civil rights of blacks and women. Eventually, though, disability prejudice would take center stage once again. When she applied for a teaching license, the New York Board of Education turned her down, again using the “fire hazard” excuse — claiming that she would not be able to evacuate herself or her students in the event of an emergency. Her lawsuit against the board — a suit she ultimately won, becoming the first wheelchair user to teach in the New York public school system — garnered her significant media attention, including interviews in the New York Times, appearances on The Today Show, and ongoing coverage of her activities by the New York Post. The Post, in its sensationalistic way, adored her — describing her as “cute” and “perky” but at the same time giving her a platform to advocate for her own rights and those of all disabled people. In 1973, when Heumann was forced off an airliner — with “safety” once again given as the reason — the Post’s coverage of the incident eclipsed that of the then-raging Watergate scandal. Their headline: She’s Judy — Fly Her.

Throughout the 1970s and into the 1980s, Heumann was among the most prominent faces of the burgeoning disability-rights movement. As a disabled person, she felt the struggle in a deeply personal way. “It was very much what I experienced my whole life,” she said recently on the website of Disabled in Action, a New York-based activist group she co-founded in 1971. “It was other people’s perceptions of what I was or wasn’t able to do.” With DIA, it was her desire to channel anger into something constructive, to confront “the oppression that we were experiencing as disabled people and not sit around and complain about it.”

Her work on the front lines of disability rights eventually took her to Berkeley, Calif. — then, as now, a Mecca for disability activists — and in 1977, when she and other organizers took over the San Francisco office of the U.S. Department of Health, Education and Welfare, Heumann was once again in the thick of things.

The 25-day sit-in — demanding that then-HEW Secretary Joseph Califano implement Section 504 of the Rehabilitation Act of 1973, which prohibited disability discrimination in all programs receiving federal assistance — is considered one of the movement’s landmark events. More than three decades later it continues to inspire new activists.

“For many young people with disabilities, Judy Heumann’s work has raised the standards for freedom, power, and independence,” says Eleanor Canter, a governing board member of the National Youth Leadership Network, an organization dedicated to empowering a new generation of disability community leaders. “She serves as a constant reminder of the strength of individuals and the power in community. Her personal accomplishments can be compared only with the example she set for young leaders, who have witnessed the embodiment of conviction and recognized it also in themselves.”

“Judy is a symbol to many disabled youth,” says Stacey Milbern, also of NYLN. When Milbern attended her first disabled youth conference, she watched a video of the Section 504 protests and was moved by Heumann’s presence and passion. “She was wearing these huge pearls and was putting some government rep in his place, even though her voice was breaking with emotion. Sitting in the dark with the video flashing on the hotel conference room screen, I remember being flooded with pride. In that moment, I committed myself to the disability community.

“I now play that video in every youth training I do,” Milbern adds.

The Right to Dream
In time, Heumann’s confrontational approach to disability activism gave way to a more diplomatic style — one that no doubt serves her well today at the State Department. Even in the early days, though, much of her important work took place behind the scenes. In D.C. she worked with members of Congress to develop what would eventually become the Individuals with Disabilities Education Act, and in the Bay Area she served as deputy director of the Center for Independent Living in Berkeley and, with CIL founder Ed Roberts, created WID in 1983. In 1995 the Clinton administration brought her into the Department of Education — a spinoff agency of the same HEW she had protested against in 1977 — as assistant secretary of the Office of Special Education and Rehabilitation Services. From 2002 to 2006 she served as advisor on disability and development for the World Bank, supporting projects that allow people with disabilities to participate in the life and work of their communities.

Her approach may have mellowed, but her passion remains. It comes out when she discusses the role the United States can play in promoting the welfare of people with disabilities worldwide.

“My dream,” she says, “is that the United States continue to play an important and positive role in helping to improve the lives of disabled people and their families around the world. … I want to look down the road in five years and say, ‘We made a real difference in X number of countries’” — whether that’s through sharing information, learning from the experiences and approaches of other nations, or increasing engagement by disabled Americans in the global disability community. “I want to see more disabled people from the U.S. being able to travel overseas — as tourists, as students, as employees getting jobs.”

As a child of immigrants, Heumann has always seen the importance of learning from humanity’s wide range of cultures. She sees it even more keenly through the eyes of her husband of 18 years, Jorge Pineda, originally from Mexico City and also a wheelchair user. “I visit Mexico on a regular basis, and it has been really wonderful to be closely connected to my husband’s family,” she says. “It’s also very exciting to see how he has changed, like other disabled people from other countries where barriers have been significant. They see things in a new way, and they also have an impact in the countries where they’ve come from.”

She shows even more passion on the subject of future generations. From her earliest days as an elementary school teacher, young people — the world they will live in, and the way they will learn about it — has always been in the front of her mind.

“Not all disabled young people are going to want to become activists, and that’s OK, because most people are not activists,” she says. “But they need to feel empowered, they need to understand their rights as equal members of our society — to learn about them and exercise them if they feel they’ve been discriminated against. … One of the outcomes of the disability movement — not just in the United States but around the world — has been in enabling more disabled people not to be ashamed of having a disability, but seeing it as a part of who they are.”

And those young people who see her as a role model? What is it that she hopes they will emulate?

“I’m relentless. I try to be fearless. You have to have strong beliefs. … People need to dream, they need to believe they can dream, and they need to have the right to pursue and attain those dreams. We have to work for them, but we shouldn’t have to do more work just because we have disabilities.”

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