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An Advocate's Insatiable Passion

September 6, 2023

By Nicole O'Brien, ECDS Intern


My eyes glued to the pages of Being Heumann. I feel as though the ever-living breath of the author, Judy Heumann had whisked through the wind and revived my dormant soul.  A smile on my face as I read about experiences all too familiar.  

Judith “Judy” Heumann (December 18, 1947-March 4, 2023) was born in Philadelphia, Pennsylvania, a Brooklynite at heart. Her parents, Ilse and Warren Heumann were German-Jewish teenagers at the time of the Holocaust, who were brought to safety in America. Their experiences taught them one thing- NEVER be afraid to question authority and challenge social conformity.   

Heumann contracted Polio as an infant. The wisdom imparted on her by her parents, as well as the senselessness of the discrimination she faced gave her vigorous resolve in her trials and tribulations. Such resolve enabled Heumann to become arguably, the greatest disability activist of this generation. The Washington post calls her the “The mother of disability rights”.  

The amount of time and energy she devoted to disability rights and equity made it more than just her job or career; it was her vocation. Her vocational success includes but is not limited to: Serving as disability advisor for two U.S. presidents, co-founding the World Institute of Disability (WID), and serving as a lead advocate for the 504 legislation. Her work had a monumental effect on the lives of those with disabilities in the U.S. and around the world.  

Until the 1970’s, people with disabilities were thought to be a menace to society. Perhaps it was because others around us didn’t want to acknowledge the routines we have to follow on a daily basis. Such as, the effort it takes to wheel oneself up an almost imperceptible incline in order to visit family and friends. At the time there were no cuts in pavement for people in wheelchairs to access. Our existence was inconceivable, or at least this is what Heumann felt.   

After years of Heumann’s mother advocating for her with the New York City Board of Education, Heumann entered school at the age of nine. Instead of being placed into general education as was expected the Board put Heumann into a “Conservation 21” classroom. This special education program was dismissive of its students' talents and needs. It did little to prepare them for life and rather established a place for them to be segregated from their non-disabled peers. Very early on in the back of their minds, Heumann and her classmates knew they didn’t belong. 

By the time Heumann was in high school, she entered regular education. Parents of disabled children in the community successfully appealed to the board of education. They had requested wheelchair accessible facilities and buses as well as support staff in classrooms.   

In the summertime, Heumann would attend all-inclusive camps designed for those with disabilities. Experiencing the fast-paced non-accessible world in high school was quite a culture shock. One of the many things that Heumann had to overcome was the embarrassment of asking her peers for help going to the bathroom.  

Often times disabled students have few friends in school, if any at all. Though many of us wish the tide was turned, the lack of social life does enhance our dedication to our studies. For Heumann this was no different as she received an academic award to end her high school career. At the ceremony, the principal refused to allow her to go on stage and receive her award. Heumann's father was having none of that nonsense and clunked her chair up the steps anyways. This reminded me of an experience I had. 

In seventh grade, I won the Heart of a Champion Award. The staff wanted me to receive the award by going along in front of the stage instead of finding a way for me to cross the stage with my peers. I told my mom of my disappointment, and she was utterly incensed. She is not a woman who takes no for an answer. She called the principal and told them that was unacceptable. They relented and let me go through a back door and up a side ramp to receive my award on stage.   

 After high school Heumann went to Long Island University with the goal of becoming a teacher. Preemptively, she called the American Civil Liberties Union (ACLU) to ask how she should go about becoming a teacher as no one in her situation had attempted a teaching career before. ACLU representatives told her to go ahead with her program of study and if she had any issues to call them back. For the next few years Heumann became politically active on campus in an attempt to try and mitigate the exclusion she was feeling and find her voice. This experience helped her to advocate for herself against the ACLU and New York City Board of Education.  

Heumann successfully completed her board examination only her physical exam stood between her and the career she wanted. She nearly gave up due to the way the board members treated her during her physical. They asked invasive questions, most notably: “how do you go to the bathroom?” The irrelevant nature of these questions left Heumann furious and dumbfounded. She decided to call the ACLU back to have them review her case. They responded that there was no discrimination in her case as she was fired due to health reasons. She knew she was up for a battle. She contacted a friend she knew from college who majored in journalism to help spread the word. Not long after her story caught fire. A handful of people in power vouched for her to the board.  

Heumann consistently reminds readers that long lasting change only happens when a group of people believe in a common cause and the pieces fall right into place. Sweeping change does not rest on the shoulders of a single individual. The next step was to file a court case against the State of New York. Seemingly, by act of God, Heuman would receive a call from Attorney Roy Lucas. He explained that he heard Heumann’s story and would love to represent her in the case. As luck would have it, Attorney Locas was a key actor in the Roe v. Wade decision. The judge to hear Heumann’s case was Judge Constance Baker Motley, the first black woman to be appointed to federal court, who also wrote the initial draft complaint of Brown v. Board of Education 

Heumann won her case. Throughout the next two years she would balance teaching and disability advocacy work. In recognition of the publicity, she was getting Heumann, and her friends decided to start a group they called Disabled in Action. Their aim was to give people with disabilities more independence in housing, transportation, and employment.  

One day while sifting through drafts of the 1973 rehabilitation act, Heumann got a call from one of her friends. They explained that congress was becoming more interested in disability issues due to Heumann’s story. A congressperson had drafted 504 legislation, which read in part:  

"No otherwise qualified handicapped individual in the United States, as defined in section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance." (Heumann & Joiner, 2021, p. 66)

 Heumann was in disbelief. She couldn’t believe that every trial and tribulation she had been through came to this moment. Soon after, Heumann received another call, this one from Ed Roberts, a well-respected disability advocate with Polio at the University of California Berkley. Roberts was also the first disabled student to live on campus at Berkley. With the assistance of a disability students group Roberts established the Burkley center for independent living. This facility was the first of its kind and it provided full care, transportation, and housing for the students who qualified and lived there. Roberts believed that Heumann would be a good addition to the team he was assembling to help make a bigger difference as they pushed for their model to be the norm and the 504 to be instilled in national law.  

Heumann took Roberts up on his offer and began traveling between Berkley and Washington as her duties needed. On one of her trips, flight staff became pushy and demanded to know if Heumann had someone with her. When it became clear she was boarding the plane by herself the staff threatened to arrest her. Heumann was in fact arrested after refusing to comply with flight staff stipulations. They revoked the arrest only after they realized she worked for a congressional office.  

“Hell yes!” I thought while reading this. We have ourselves a Rosa Parks of the Disability movement!  

Mrs. Heumann, I am humbled I had the opportunity to hear you speak at a virtual event. I can only imagine the words of wisdom you would have imparted upon me if we had worked together. I envy your composure and relentless resolve amid roadblocks. Who knows the change I would be able to institute if I embodied a fraction of your insatiable passion.  

October is Disability Awareness Month at Ferris. This October ECDS will deliver programming to honor the life and legacy of Judy Heumann. We hope this tribute has inspired you to dive deeper into Heumann’s story and join us for events we have lined up. Thursday, October 5 ECDS is featuring Crip Camp: A critically acclaimed documentary about the Disability Rights Movement led by Heumann and her peers. The documentary will be shown in the David Eisler Center in room 203 at 6pm. A limited number of Heumann’s memoir will be available!  

On Tuesday, October 24 at 12 p.m. ECDS is hosting a book discussion in FLT 240. Light refreshments provided. RSVP required. Come discover the Heumann inside you!