Disability rights advocate Judy Heumann transformed my sons’ lives — and mine
My kids lost one of their greatest champions this week.
Though a world-traveler renowned and revered for her trailblazing disability rights activism, the inimitable Judy Heumann took an intimate interest in the lives of so many people — our family included.
I have my 20-year-old disabled son, Judah, to thank for my friendship with Judy. Judah has an extremely rare genetic mutation that science didn’t even identify until 2015, and wasn’t diagnosed in Judah until 2018, at age 16. Because of my advocacy for ways to better include him in our Washington, D.C., synagogue’s religious school, and in the shul community at large, I was asked to join the inaugural Inclusion Task Force at our synagogue, Adas Israel, which Judy would co-chair. Up until our first meeting, I’d had only an inkling of what a big deal she was. I’d seen her around shul, said hello, perhaps chatted a bit, but now I understood that I was in the presence of a disability rights legend.
Persistent, gentle, relentless, nudge — these are all words I’ve heard to describe Judy, and they completely square with my experience of her. Though I’d never been a particular fan of the phrase “special needs,” the word disabled didn’t exactly roll off my tongue. But Judy told me it was important for Judah to claim the disabled identity as he grew older in order to gain more awareness of his needs and advocate for them. She pushed my thinking forward in so many ways. She didn’t always agree with the decisions we made for Judah, especially about whether an inclusive school setting was best for him or how soon we should transition him into one. Sometimes she made me doubt myself, but I knew she spoke up because of the potential she saw for my son.
Just two weeks ago, as I dined with Judy at Sababa, an Israeli restaurant near her home in Washington, D.C., I got a taste of what it’s like to dine with a celebrity. When we weren’t being interrupted by friends and admirers, we laughed over shared plates of smoked trout salad, beet hummus, fried cauliflower and chicken livers (her idea!). As always, she asked tons of questions about my two children and challenged me to think even bigger for Judah’s future.
“All I know is what he did at his bar mitzvah,” she said, repeating a common refrain I had heard from her since April 2016, when Judah made clear his strong commitment to Judaism in front of hundreds of people at our synagogue.
Judy actually wasn’t able to attend the bar mitzvah — she had been swept away on a trip to China in her role as special advisor for international disability rights at the U.S. State Department — but she made time later to listen to every word of the audio recording made in the sanctuary that day.
There, she heard his d’var Torah — delivered in the form of a back-and-forth conversation with the rabbi, in order to help his words be more clearly understood — his chanting of the Rosh Chodesh maftir and of eight p’sukim of the haftarah. She even got to belatedly witness the magical moment that occurred when another of the rabbis read the energy in the room and invited everyone to stand up to bless the moment with a Shehecheyanu, because even those who didn’t know Judah were totally present for him that morning. Judy understood what Judah had accomplished.
She also never left my 17-year-old, Simon, out of the conversation. As we consider our next steps for Judah when he finishes high school this year, she also wanted to know what colleges Simon had applied to and what he thought of each option. Simon has left no doubt that he recognizes Judy’s impact on his life. He blew us away with a heartfelt, unprompted Instagram tribute to her and her role in supporting his right, as a student with ADHD, to accommodations in schools. She did it through the sacrifices she and other activists made to put teeth into Section 504 of the Rehabilitation Act of 1973. “I owe so much to her,” he wrote, “and the only thing she ever acted like I owed her was a handshake and a kiss on the cheek.”
Judah had other thoughts about Judy’s requests to give or get kisses. (“Will you lean down so I can give you a kiss?” she would often say.) Judy always respected a reluctant Judah’s self-advocacy, but that never stopped her from asking every time she saw him. Only recently did he finally allow her to give him a kiss, but make no mistake about how he feels about her. Judah lights up with every mention of her name and has always felt so proud to know her, and to know how much she cared about him. When we heard that she was gravely ill, he said, “I’m worried about her.”
There are countless people closer to Judy than we were. She has touched lives around the world. But I experienced and watched time and time again how Judy made people feel special, and I’ve now read many more stories illustrating this. She invited you to sit with her, she sent texts to make sure you had followed up on a lead she gave you, she cared enough to push you to do better, to be better. As her star rose in the wake of the Oscar-nominated documentary film Crip Camp and her books, Being Heumann and Rolling Warrior, I felt sheepish about asking for her time. She was kind and generous enough to agree to meet with my book club, where she charmed the pants off of everyone. And after I finally followed her edict to call and make a dinner date, she reassured me. At that dinner two weeks ago, she said I was being silly. “I love your family,” she said.
About a month ago, at the end of the kiddush during our shul’s Shabbat celebration of Jewish Disability, Awareness, Acceptance & Inclusion Month, Judy pulled out her phone and said she really wanted a photo with my family. We all wanted the picture but were feeling a bit uncomfortable about using the phone publicly at shul. Just then, a young woman starting to work in the disability rights field who had come to the service just for the chance to meet Judy jumped up and said, “I’m not Jewish. I can take the picture!” We laughed and then took multiple versions until we were all satisfied that we had captured the image the way we wanted it — all of us tucked in close. Unfortunately, I kept forgetting to ask her to share the photo with me, so it remains stored away on her phone, and we are left only with the memory.
My whole family is deeply saddened by the news of Judy’s death, which is truly a loss for the broken world that she never stopped trying to repair. On Shabbat, the day Judy died, I had entered the sanctuary and noticed a wheelchair in her usual place and anticipated walking over to greet her. Then, to my disappointment, I realized that it was someone else. Just moments later, I heard the news. I’m sure that at shul, my eyes will continue to turn toward that spot, only to be reminded that she’s gone.
Many of her incredible accomplishments will live on — in the law, in the lives of the disabled, and in the hearts and actions of everyone she loved and inspired. My heart goes out to her beloved husband Jorge, the rest of her family, her wonderful caregivers and her dearest friends. May her memory and her legacy be for a blessing to us all.
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