Judith Heumann co-founded the World Institute on Disability

Person: Judith Heumann
Lived: 1947–2023
Field: Disability rights
From: American

The story

Judith Heumann was born in Philadelphia in 1947 to German Jewish immigrants and contracted polio as a baby, using a wheelchair for most of her life. After being refused a place at school and a teaching license because of her disability, she spent her life making sure other disabled people would not be shut out. In 1974, as a legislative assistant to the chair of the U.S. Senate Committee on Labor and Public Welfare, she helped develop the legislation that became the Individuals with Disabilities Education Act, the law that guarantees children with disabilities a public education.

By the early 1980s Heumann was deputy director of the Center for Independent Living in Berkeley, California. In 1983 she joined fellow activists Ed Roberts and Joan Leon to found the World Institute on Disability, a private nonprofit. It was set up as a research center and information resource, offering training, public education and technical assistance. Heumann served as its co-director for a decade, until 1993.

From the start the institute was run by the people it served: it describes itself as one of the first global disability rights organizations founded and continually led by people with disabilities. Its early research focused on personal assistance services, the help with daily tasks that allows many disabled people to live in their own homes rather than in institutions. In 1988 it completed an in-depth study of personal assistance in five states, and in 1990 it carried out a national study of their cost effectiveness. Its health and benefits recommendations later appeared in the Ticket to Work and Work Incentives Improvement Act of 1999, which helped disabled people take jobs without losing health coverage.

The institute also worked abroad. In 1994 it opened an office in Moscow to train staff of the All-Russian Society of the Disabled, and it later ran disability advocacy training in countries affected by conflict. In 2004 it launched Disability Benefits 101, a website that helps people understand how work affects their benefits.

Today the institute works on accessibility, employment and benefits, community inclusion and emergency preparedness, and its fellowship program for disability leaders around the world carries Heumann's name.

Why it matters

The World Institute on Disability that Heumann co-founded still helps disabled people find work, keep benefits, stay safe in emergencies and lead change in their own communities around the world.

About Judith Heumann

Daughter of refugees from Nazi Germany who led the 504 sit-in, helped win the Americans with Disabilities Act and carried disability rights into governments around the world.

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Judith Heumann

1947–2023 · Disability rights

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