Herstory Profiles: Changing the Landscape for All Bodies and People Part One by Anjeanette LeBoeuf

July and September’s Herstory Profile will be centered on a true champion, leader, activist, and humanitarian Judy Heumann. Her life is one that everyone should aspire to. Judy is considered the Mother of the Disability Rights Movement in the United States and potentially even the world. Her entire life is one of activism, progress, and equality. She is the embodiment of strength, courage, determination, tenacity, and spirit. What Judy was able to accomplish, create, and push for is so incredible that two posts are needed to do her justice.

In March 2023, the world experienced the passing of revolutionary, ground shifting persistent activist Judy Heumann. Her contributions to the well-being and success of the human species should be cemented in history books, statues, and lore. Judith ‘Judy’ Heumann (1947-2023) was a lifelong activist, mover/shaker, and motivational speaker for the rights and dignity of ALL people especially those deemed disabled.

Judy was born to German Jewish immigrant parents, in Philadelphia. Both her parents survived WWII but many of her extended family were killed in the Shoah. Her father Werner immigrated to the US in 1934 and her mother Ilse came a year later. Judy has spoken many times about how the very fact that the Third Reich were extremely active in killing those deemed disabled and ‘imperfect’ was never far from her parents and her world view. The disabled community and the queer community were both targeted in the very first policies, discrimination, and killings by the Nazis alongside the Jewish population.

Judy became disabled after she came down with Polio at 18 months. She would use a wheelchair for the remainder of her life. Her parents were her fiercest allies growing up. They challenged the school Judy was rejected from when the school deemed her a ‘fire hazard’ because Judy could not remove herself from a building if there was a disaster. Judy grew up in a time when the standard/tradition was for disabled people to be sent away, institutionalized, or forced into seclusion.

Due to the ruling by the New York Board of Education, Judy would be home schooled for three years while her mother Ilse, advocated for her. Her mother was successful in her advocacy and Judy started to attend a ‘special school deemed for disabled children’ at fourth grade. When high school came around, Judy was told she would again need to return to ‘homeschool.’ Ilse and Judy were able to connect with other parents and students to challenge the school policy which they won. Judy entered into public high school in 1961. While Judy and Ilse were challenging the policies, procedures, and inequalities of the school system, Judy started to attend a Camp which would shape and strengthen the course of her life. At the age of nine, Judy attended Camp Jened during the summers in upstate New York.

Camp Jened or Crip Camp as it was called by its attendants (You can watch the amazing documentary Crip Camp on Netflix or learn more about it here ) was a summer camp for children, teenagers, and adults who were on the spectrum of disabilities; it provided a safe and positive community/experience/environment. Camp Jened would run from 1951-2009.

It was during these nine summers that Judy found community, found solidarity, found joy, and found different levels of freedom. Camp Jened provided the space for people to explore their needs, their wants, and their desires.

Many of the camp attendants and counselors would become the leading founders to the Disability Rights Movement and the Independent Living Movements. Both movements would radically change American policy and culture.

When Judy was not attending Camp Jened, she excelled in her studies and would go on to attend undergraduate and graduate schools. While attending Long Island University, Judy helped to organize and rally students to demand the university provide accessibility for people with disabilities including the right to live on campus. After receiving her bachelor’s degree, Judy was denied a teaching license in New York. She was denied once again due to her being labeled a ‘fire hazard.’ Judy sued the Board of Education on the basis of discrimination. Her lawsuit gained publicity and the Board of Education settled and Judy became the first wheelchair-using teacher in New York City. She would teach in New York for 3 years with a special focus on speech therapy.

 The publicity of her lawsuit gained national attention; Judy started to receive hundreds of correspondences from people talking about their own battles with discrimination due to their disabilities. This would remind Judy that her struggle was not hers alone. Alongside many Camp Jened Alum, Judy created Disabled in Action (DIA) an organization that focused on advocating and securing rights and protection for people with disabilities thought civil rights and political protests. DIA were heavily active in protesting including staging an eighty person sit in on Madison Avenue. DIA and Judy were active in trying to include Disable Rights into the Rehabilitation Act but were vetoed by President Nixon in 1972 and 1973. You can access Judy’s own testimony about this event here.

Judy would move across the country to Berkeley, California to attend graduate school and take on the job of Deputy Director of the Center for Independent Living. Judy was one of the early faces of the Independent Living Movement. In her position of Deputy Director, Judy became the leading catalyst for nationwide programs for special education, research, vocational rehab, and independent living centers which would help over eight million people.

Judy was a legislative assistant to the Chairperson of the US Senate Committee on Labor and Public Welfare in 1974 which helped to develop the Education for All Handicapped Children Act (EHA) which ran from 1975-1990. In 1990 it was renamed the Individuals with Disabilities Education Act (IDEA). This ensures that all students who have a disability are provided with a FAPE (Free Appropriate Public Education) which is tailored to individual needs. Judy was a huge advocate for the change in name. ***

Judy’s activism would also increase once she arrives in Berkeley. In September we will explore the fundamental 504 Sit-In, the Americans with Disabilities Act, and the rest of the extraordinary life of Judy Heumann.

***handicapped is an outdated term which carries stigma and continues forms of segregation and separatism. Check out the worksheet on how to navigate language and terms dealing with the Disability Communities here.