In late 2020, I joined Alice Wong for a DC Public Library event as part of the launch of Disability Visibility. The energy at the virtual event was electric, and I was buoyed to see so many people tune in and ask thoughtful questions. Afterward, as I replied to my Twitter DMs, I froze. One of my messages was from the inimitable Judy Heumann.
Earlier that year, when the documentary Crip Camp (available on Netflix!) had been released, I inhaled every piece of information that I could about Judy. She had, one step at a time, changed the world. My life as a disabled person is better because of her. She recognized the necessity of breaking the rules when the rules are breaking you. I dog-eared and underlined passage after passage in her memoir, Becoming Heumann. I cried as I told David about her bravery and wisdom.
And then, she DM’d me. Well, her assistant did. Judy loved your presentation. She wants to meet you. Are you available for a video call in the next few weeks?
I have tried to think of how to describe the sensation of being contacted by your hero. It was like a portal had opened.
Judy and I met, and she was lovely. She also wanted to talk a lot about my green sweater. I was instructed to send her assistant a link so that Judy could buy one too. Five minutes into the call, she asked for my phone number and entered it into her phone. It’s Judy Heumann, she texted. She asked what I was working on, and I told her about my picture books and the memoir I hoped to publish. “Let me know how I can help,” she told me.
“I’d like to interview you for my podcast,” she said toward the end.
A recording was scheduled for months later. In the meantime, Judy and I stayed in touch. I was in her rotation. What I’ve learned since is that Judy reliably contacts her friends — often with phone calls and often after 11 pm. The first morning I woke up to two missed calls from Judy Heumann was a very strange day.
And, just like she had promised, Judy supported me. She read my book proposals and offered her official endorsement. When my first literary agent left the business, Judy introduced me to her agent. When I was considering a new project, she helped me brainstorm and introduced me to her friends. I knew that if I texted her, she would reply.
And before too long, Caroline and I were signing a collaboration agreement to write a picture book with Judy. And not long after that, the three of us signed a book deal with Dial, the imprint at Penguin Random House that is publishing our other two picture books.
The Right to Belong describes Judy’s efforts to be included in the classroom, first as a student and then as a teacher. Caroline, Judy, and I met weekly over video to develop the text and narrative. We wanted a book that would capture the interest of early elementary kids and help them consider how to respond to injustice in their own lives.
Judy was adamant that the book not be a celebration of her achievements but, instead, that we use it to invite participation. We hope the book is both. We recently finalized our illustrator — the brilliant Noah Grigni, and a few weeks ago, we finished drafting the book announcement. We all sent in our headshots and were scheduled to meet with our editor to discuss the next round of edits the following week.
And then, a few days after Judy emailed her lovely photo, our shared agent sent an email. Judy had died.
I’ve never seen my private grief reflected publicly. It was unsettling at first, to be honest. There were moments of laughter and comfort, though. Hours after my agent emailed, I started seeing other disabled people post about Judy’s late-night phone calls and frequent check-ins. I read dozens of stories about her professional support and encouragement.
I was floored. Judy had changed the very essence of disability law in the United States, worked closely with two presidents, and produced an oscar-nominated documentary with the Obamas, but it seemed like most of her energy went into her personal relationships. Into fortifying the next generation of disabled leaders, one person at a time.
My relationship with Judy wasn’t unique, and that’s what makes it even more beautiful. It’s how she functioned in this world. No action or person was too small.
Once, when Caroline and I were in a meeting with her, she answered her phone. It was a disabled friend of hers who lived in a group home. The accessibility shower grips had broken, and repairs were delayed. Judy wrote down the details and promised to work on it. I have no doubt that she did.
Judy Heumann
1947-2023
May her memory be a blessing.
The Mother of Disability Rights
My condolences on your personal loss. Thank you for sharing and giving us all extra insight into what we have all gained from the life of Judy Heumann. At the funeral of one of my mentors, I learned that in South American activist communities, people often rise up and declare that they will carry on the work of deceased. We can all carry on the work Judy started.
What an amazing connection. And loss. I was raised by a mom with MS. She wasn’t able to come to my High School graduation because the building had 20 steps to the entrance. I’m sure that Judy and others like you, are the reason that changed. I can’t wait to see your books.
❤️Bonnie (David’s aunt in Maine)