Last updated: August 8, 2023
Person
Judy Heumann
State Department photo by William Ng
Quick Facts
Significance:
Leading figure in the Disability Rights Movement
Place of Birth:
Philadelphia, PA
Date of Birth:
December 18, 1947
Place of Death:
Washington DC
Date of Death:
March 4, 2023
Place of Burial:
Olney, MD
Cemetery Name:
Judean Memorial Gardens
Judith “Judy” Heumann (pronounced Human) was a lifelong disability rights activist. Heumann is most well known for her leadership role with the 1977 sit in at 50 UN Plaza in San Francisco that resulted in the signing of Section 504 of the Rehabilitation Act of 1973. She worked in government and founded four different non-profits. Judy has been called the mother of the disability rights movement.
“Some people say that what I did changed the world. But really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.” – Judy Heumann
When have you had to take an indirect path to an end goal?
Early Life
Judy Heumann was born in Philadelphia on December 18th, 1947, to Werner and Ilse Heumann, two Jewish German immigrants. At eighteen months old Judy fell ill with polio and became paralyzed resulting in Judy using a wheelchair to get around since early childhood. As a child with a disability, she was not eligible to be enrolled in public schools in New York City where she grew up. Ilse Heumann worked hard for many years to find a way to enroll Judy in a school. When Judy should have been in fourth grade Ilse finally succeeded.
Judy was enrolled in Health Conservation 21, a special program for people with disabilities. The program put students between ages 5 and 21 in one class together. Judy's class was held in the basement of New York City Public 19. She realized that her school days looked very different to the students upstairs. Their days in the classroom were also much shorter than their peers’ upstairs with three hours of instruction instead of six. They also had a nap period, during which the kids had to remain in their wheelchairs. Judy noticed that several of her teenage classmates still struggled to read, due to the poor quality of instruction. Due to her voracious reading since early childhood, Judy was able to enroll in a standard high school. She then went on to attend Long Island University after graduation.
Around the time she enrolled in Health Conservation 21, Judy also attended her first summer camp. Initially she attended a camp named Camp Oakhurst in Oakhurst, New Jersey. After a few years she began attending Camp Jened in Hunter, New York instead. The camp was designed for children with disabilities, so all campers had the help they needed. At the camps the children had attendants whose job was to help the campers move around and perform daily tasks. This experience showed Judy what her life could be like if she didn’t have to rely on people “being nice” for her to be included in daily life [1]. At the camp the campers had all the support they needed, without having to go out of their way to ask for it. This was a stark difference to the way Judy was used to living back in Brooklyn. Judy continued to attend camps through her childhood. She eventually became a counselor at Camp Jened when she was older.
Suing for a Teaching License
While at Long Island University Judy chose to study speech therapy despite wanting to become a teacher. She made this choice because she needed a major that the federal Office of Vocational Rehabilitation would accept, and an education major was not one. Because she had a disability, the Office of Rehabilitation would pay for her education if they approved of her major. Judy’s true career aspiration was to be a teacher, but there were no teachers in wheelchairs that she knew of. Since she couldn’t name someone with her disability who was a teacher, the Office of Rehabilitation would not pay for her to be an education major.
Knowing this difficulty ahead in her freshman year of college, Judy called the American Civil Liberties Union (ACLU). Judy explained that she expected she would be unfairly rejected for her teaching license due to the physical exam. The physical exam was meant to be a standard procedure to ensure teachers were healthy and were not a danger to their students, either by spreading disease, or being incapable of caring for them in emergencies. However, after her experience attending New York City Public Schools, Judy knew the Board of Education did not think highly of people who used mobility aides, like wheelchairs. She expected her use of a wheelchair would somehow result in her failing the physical exam, even though she no longer was infected with the polio virus and had an electric wheelchair.
Unfortunately, eighteen-year-old Judy was correct. After finishing university, the New York Board of Education rejected her application for her teaching license due to her using a wheelchair. The part she hadn’t expected was that the ACLU would not help her. They said she had been rejected for a medical reason, which is not discrimination. Judy knew this wasn't true, she had been discriminated against. She tried to tell the ACLU lawyer about the questions the doctor had asked her. Many of them were unrelated to her ability to teach, including “show me how you use the bathroom.”
Angered by the ACLU’s decision, Judy decided to try to go about things a different way and she reached out to a contact at the New York Times. In 1970 her story broke on the front page of the Times. Human rights lawyer Roy Lucas reached out to interview her about her experience. Taking advantage of this opportunity Judy asked if he would be willing to represent her and he agreed. At the age of twenty-two Judy took the New York City Teaching Board to court. The judge assigned to her case was Constance Baker Motley. Judge Motley was the first Black woman to graduate from Columbia Law School. She took special interest in Judy’s case. This case settled out of court, and Judy Heumann got her teaching license. The fight for her license and the publicity around it led Judy to realize that this fight was bigger than just herself. After the lawsuit was settled, she and a few other people gathered and formed the activist group Disabled in Action. This was the first of many organizations that Judy Heumann would help found over her lifetime.
Out of New York City
A few years after the lawsuit Judy received a call from Ed Roberts, a disability activist from Berkeley, California. Ed was one of the founders of the Center for Independent Living (CIL). He had heard of Judy from her work with Disabled in Action and wanted her to come out to Berkeley to join CIL. After some initial hesitation, Judy agreed. She was intrigued by the idea that there was a place where her involvement in public life was not reliant on people “being nice.” She moved out to Berkeley and earned her master’s in public health from University of California, Berkeley. While working with CIL she leaned a lot about what it would take to incorporate people with a variety of disabilities into everyday society.
In 1974 Judy was approached about working for Senator Harrison Williams in Washington, DC. Senator Williams was a New Jersey representative from the Democratic party. He was a strong advocate for the civil rights of people with disabilities. This was an opportunity she eagerly accepted. Judy worked in Senator William’s office on the team that was working on what would become the Individuals with Disabilities Education Act (IDEA). As someone who had been enrolled in Health Conservation 21 Judy was able to use her lived experience to help design these laws.
Section 504 Protests
While in the nation’s capital Judy also took the time to help found the American Coalition of Citizens with Disabilities. This Coalition was an organization whose goal was to track progress of section 504 of the Rehabilitation Act of 1973. The goal of section 504 was to prohibit discrimination based on disability and ensure accessibility of public buildings and programs. This would allow disabled people to have access to education and employment that they did not have guaranteed at that time. Section 504 had been drafted for some time, but the regulations were not published. There was significant push back from organizations, such as universities, hospitals, and local governments, that would have to follow these new rules. This opposition caused delays. 504 had been floating in a limbo for years, and people were starting to get impatient waiting for it.
One and a half years after living and working in Washington, DC Judy was called back to Berkeley by Ed Roberts. He was moving on to a new government position and wanted Judy to step in as the deputy director for the CIL. With her new experience and knowledge earned in DC Judy returned to the CIL, just in time to lead the fight for 504. In 1977 a nation-wide protest began calling for the signing of section 504 of the Rehab Act of 1973 as is. Judy was one of the organizers as well as an on-the-ground leader at the San Francisco part of the protest. This protest lasted over 20 days inside a local branch of the federal Health Education and Welfare office. After a long fight, the protesters emerged from the building victorious with regulations for section 504 published.
International and State Department Work
This did not mean the fight was over at CIL. They knew that organizations and businesses would fight back against these new regulations. To prepare for this, the CIL started a law center with a focus to fight for implementation of 504 regulations around the country. Then in 1980, Judy, Ed Roberts, and their fellow activist Joan Leon co-founded the World Institute on Disability (WID). The aim of WID was to research global disability issues and see how other countries approached them. The three founders served together as co-directors for around twelve years, until the board decided to name Ed the sole director.
In 1993 Judy received a call asking if she would be interested in a position in the Clinton Administration. She told them she would be interested in the assistant secretary of the Office of Special Education and Rehabilitative Services (OSERS) “and nothing else.” OSERS is an office in the Department of Education. Its goal is to guide and support programs and projects that would improve the lives of people with disabilities. Judy had some experience working with OSERS, having applied for, and received grants from them with her work with WID and now she had just asked to lead it. After going through the interview, Judy Heumann got the position. As Assistant Secretary, she was the highest-ranking disabled person in the United States at the time. Taking this position also meant she would have to move back to DC from Berkeley.
Judy worked for the Clinton administration until his term ended in 2001, at which point she was offered a position with the World Bank. Serving as their first Adviser on Disability and Development, Judy traveled extensively meeting with people all over the world. The aim of her job was to advocate for consideration of people with disabilities in plans for international development. She worked with the World Bank for four years after which she returned to Washington, DC.
In 2010 Judy was asked by the Obama administration to work with them. They wanted to convince the US Senate to ratify the United Nations Convention on Rights of Persons with Disabilities. A position was developed for her titled Special Advisor on International Disability Rights. She held this position until 2017 when President Obama left office. Her work continued to build on her experiences with both OSERS and the World Bank, focusing on bringing disability rights into discussions of development. After 2017 Judy continued her advocacy. She gave lectures and sat on panels, hosted and interviewed for podcasts and documentaries. Her memoir was published in 2020. She did this all the while advocating for people regardless of ability. Judy passed away on March 4th, 2023, in Washington, DC where she lived with her husband Jorge Pineda.
Legacy
Judy Heumann is known as the “Mother of the Disability Rights Movement.” What started as a fight to get an education catapulted her into a lifelong campaign for equality and equity. In her memoir Judy credits her drive to her parents, who started the fight before she even knew about discrimination. Their support and the support of her fellow activists were critical to her work. Whenever something got in her way, she found a way around it--always saying yes to opportunities even if they involved facing difficulties both known and unknown. Her life left a mark on civil rights law in the US and started many important conversations about rights to education, public access, and health care. Judy Heumann is buried Judean Memorial Gardens in Olney, MD.
When has fighting for something you believe in helped others as well?
Footnotes:
1: Heumann and Joiner, pg. 26
This article was researched and written by Alyssa Eveland, American Conservation Experience Fellow, Cultural Resources Office of Interpretation and Education
Sources:
Heumann, J. & Joiner, K. (2020). Being Heumann: The Unrepentant Memoir of a Disability Rights Activist. Beacon Press.
Crip Camp: A Disability Revolution, Directed by James Lebrecht and Nicole Newnham, Netflix, 2020 Crip Camp | A Disability Revolution
Advocate for rights of disabled people: Judithheumann. Judy Heumann. (2023, April 20). https://judithheumann.com/project/about/