Judy Heumann, a lifelong advocate for Jewish Americans and a civil rights activist for people with disabilities, is considered the mother of the disability rights movement. She died unexpectedly on March 4 at a hospital in Washington, D.C., where she lived. She was 75 years old.
Ms. Heumann was born in Philadelphia and moved to Brooklyn when she was three months old; her two younger brothers were born there. Her parents, Werner and Illyse Heumann, were German Jews who immigrated to the United States in 1934 and 1935, respectively. Both of Judy’s parents lost their parents, grandparents, and many other family members to the Nazis.
Judy contracted polio when she was 18 months old. The disease left her unable to walk and with limited strength in her arms, legs, abdominal area, and much of her upper and lower body. She began using a wheelchair from an early age.
When Judy was 5, her mother attempted to enroll her in public school, but she was denied the sacred opportunity to receive an education (which was mandatory for all U.S. citizens, except for people with disabilities) because she was deemed a “fire hazard.” Instead, she received minimal, insufficient home instruction for four years, until she finally was permitted to attend public school and was placed in a segregated class for students with disabilities.
Judy began to bond with her disabled brothers and sisters, and she was exposed to what she referred to as “disability culture.” As she wrote in “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” published in 2020: “Despite what society might be telling us, we all had something to contribute. We were doing what kids naturally do until they are taught otherwise: Slow down enough to listen and truly see each other. Connect. Ask questions. Find a way to have fun. Learn.”
Judy was reunited with many of these classmates in 1971, when she was a counselor at Camp Jened, a summer camp designed for children with physical and intellectual disabilities, described by many as a utopia. Judy was immersed in disability culture there. Like Judy, many Jened campers eventually became founding leaders of the disability civil rights movement of the 1970s. These inspirational experiences are brilliantly captured in the 2020 documentary film “Crip Camp: A Disability Revolution.” Reminiscing on her experiences at another camp for children with disabilities, Judy wrote: “Camp, I thought, was what it would feel like if society included us.”
I was born with cerebral palsy, which affects my ability to walk; I use both a walker and a wheelchair to get around. Like Judy, I am not affected cognitively.
I relate to Judy’s experiences at camp. When I was 9, I attended a sleepaway camp for the first time. It was Camp Simcha, which is run by Chai Lifeline, a Jewish organization dedicated to enriching the lives of children and young adults with disabilities, illness, trauma, and loss. Like any young child trying something new or being separated from my parents, initially I was anxious and nervous. But those feelings subsided once I spent a few hours at camp.
Like Camp Jened, Camp Simcha is a utopia, radiating positive energy, joy, hope, and faith. I was surrounded by approximately 120 children and young adults with physical disabilities of varying degrees, including invisible disabilities such as gastrointestinal or autoimmune diseases and visible disabilities such as cerebral palsy or muscular dystrophy, as well as people who needed oxygen machines and ventilators to help them breathe. I had never been exposed to such differing or even severe disabilities before.
I quickly learned that we all had many things in common relating to our shared lived experiences, struggles, and emotions. Camp liberated my disabled brothers and sisters — and me. We still had our disabilities and assistive devices, but the societal barriers, prejudice, and ignorance placed before us no longer existed. Here, people with disabilities crowd-surfed, climbed mud courses, and ziplined.
I asked my friends to share their perspectives. Friend 1: “I thought to myself, ‘What did I get myself into? These kids all look disabled; how am I gonna be able to treat them as regular people?’ I very quickly came to realize that disabled people are just ‘normal’ people with weird-looking bodies. Friend 2: “I always tell parents to let their kids stare. Kids who aren’t allowed to stare and be curious will grow up to be parents who will instill that behavior in their children.” Friend 3: “I’m proud to feel this way, that if surgery came out to fix CP, I wouldn’t take it because it is a big part of who I am, even though I won’t let it define who I am.”
No matter a person’s disability, they always kept a smile on their face and attempted to enjoy every moment. I learned patience, relatability, understanding, compassion, empathy, love, community, and brotherhood, which have shaped me.
I also had the opportunity to attend Capital Camps, a mainstream Jewish sleepaway camp, where accessibility is seamlessly integrated. It perfectly embodies Judy’s dream of an equitable world for disabled people. I was able to participate in every activity together with my new friends. I was treated no differently than any other camper, and I was embraced with open arms. One friend said to me: “We don’t see your walker or your disability, only you!” I felt like crying. He saw me as his friend who had a disability, but who was not defined by it. That was a moment I will never forget and cherish forever.
This summer, I had the opportunity to participate in a cross-country tour focusing on politics, history, activism, and political dialogue. It’s run by the Jewish organization ETGAR 36, founded by Billy Planer. I was the only person with a physical disability on this trip, but when I spoke to Billy beforehand, he was graciously willing to accommodate me. I was incredibly grateful. I was able to participate in 99% of the activities, which is due to Judy’s relentless advocacy for disabled people and societal accessibility. I made memories and friendships that will last forever.
I asked my closest friends to share their perspectives. Friend 1: “Meeting Daniel is something I’m so grateful for. I was made more aware of accessibility and how important it is, and how recent the movement was. Even when there were inaccessible activities, Daniel was still happy to be there and grateful for the opportunity, although a world where more accessibility is available is something to push for.” Friend 2: “Traveling with Daniel helped me see the different aspects of living with a disability. Going to dinner with him each night and navigating parking lots, food halls, and restaurants to find accessible spots made me see that we have a really long way to go before we reach full accessibility. I’ll never forget that Daniel kept a positive outlook and demeanor, no matter what was thrown at him.”
I would like to add that people with disabilities are not inherently inspirational for existing as we are. However, I wholeheartedly believe that we can meaningfully inspire non-disabled people through our personal outlook and how we individually choose to carry ourselves.
Etgar is the Hebrew word for challenge. Inaccessibility was definitely a challenge that I encountered. At the Christopher Street subway station in Manhattan, my friends and I realized that the only accessible route would leave us nowhere near our hotel, so we decided that some friends would help carry me down the steps. I’m accustomed to facing such barriers, but this shouldn’t be normal.
This became a fun adventure as we joyfully sang Hava Nagila. It was reminiscent of a bar mitzvah celebration.
When I was in middle school, I inquired about certain safety procedures that required standing on a toilet in order to hide from a shooter. That is impossible for me. I asked an administrator who knew me what I should do. He responded: “Daniel, in these situations adrenaline kicks in.” I was absolutely stunned. Why couldn’t he admit that he was unprepared and didn’t have a safe alternative solution for me?
I cannot hide my disability. Why should I hide my Jewish identity? I proudly wear my magen David everywhere. I’m forever proud to be Jewish. Judy maintained a strong Jewish identity throughout her life. She attended Hebrew school and regularly went to synagogue with her family, observed all the Jewish holidays, ate traditional Jewish foods, and celebrated becoming bat mitzvah. But there was no elevator at her synagogue, which was a tremendous barrier; her father assisted by carrying her up the steps, as detailed in her memoir: “My father carried me up two flights of steps all of the time to get to synagogue. Why couldn’t I just be carried up the steps to school every day?”
Fifty years later, I also experienced this physical barrier. For most of my childhood, my synagogue, the Morristown Jewish Center Beit Yisrael, didn’t have an elevator or accessible lift, so my father and others had to either carry me or help me walk up the steps. The bimah was not accessible. This was a constant reminder that as a person with a disability, I lived in a world that wasn’t built for me. However, I’m able to live an independent, meaningful, and fulfilling life because of Judy’s work.
Like Judy’s parents, my parents, along with other community members, lobbied successfully for an accessible lift for both the bimah and the building. It allows me to be completely independent at synagogue. I can ascend the bimah to open the ark, read from the Torah, or have an aliyah! I’m overjoyed! I carried the Torah during my bar mitzvah, which was euphoric.
Accessible accommodations assist not only disabled people but the entire community. For example, the installation of the lifts for the bimah and the building also benefits parents who have newborn children in strollers. Judy argued that disabilities, such as aging, brain injuries, spinal cord injuries, strokes, and so on, are natural life occurrences, and we must build our society around this fact. “Disability is a family that you can join at any time,” she said in a Ted talk in 2016.
Judy encouraged disabled people to resist defiantly by challenging the unjust status quo and affirming our dignity and humanity. “How many people does it take to stop a bus in New York City when they refuse to let you on because you’re in a wheelchair?” she asked. “One.”
Thank you for everything, Judy. You changed the world. Although we unfortunately never had the chance to meet, I can definitively say that you are my hero. You will be remembered as a tzadika, a righteous Jewish woman.
May your memory be a blessing. I promise you it has already inspired a revolution.
Daniel Milich of Morristown, a recent graduate of Morristown High School, is passionate about Jewish history, politics, and disability activism. He recently volunteered at the local Jewish Historical Society of Greater MetroWest, which was an enriching experience for him, and he is considering mentoring young children with physical disabilities as a future career path. He’s on Instagram at danielmilich; email him at firstname.lastname@example.org.