Memories of Judy Heumann, my Oldest Friend

Neil Jacobson seated far left, Judy Heumann seated in the middle, third from left. Photo by Sasha Maric

By Neil Jacobson

I wrote this the weekend Judy Heumann died. I’ve known her since I was 4, and she was my oldest, most beloved friend , sister, mentor, confidant, and so much more!​

That weekend, I was at my computer crying. Since my speaking ability has become laborious and unintelligible, I’m typing to verbalize my grief.

No article, book, movie, or TV segment adequately describes the Judy I loved and who loved me. I won’t try listing all of Judy’s accomplishments achieved for people with disabilities. I can’t remember all the well-deserved tributes, accolades, honorable doctorates, and awards Judy received.

My first memory of Judy was lunchtime when I started kindergarten. There were three boys with similar types of cerebral palsy. Judy fed us in a round-robin fashion. She and her mom organized all the parents in our class and demanded more services for children with disabilities.

Protesting was one of the ways Judy got things done. My most memorable protest was when I was in high school. Judy obtained buses to transport us from New York to Washington to persuade Congress to pass a bill. Shortly before we arrived in DC, Congress voted against the legislation.

Judy Heumann demonstrating (in white T-shirt and cap). Photo by Tari Hartman Squire.

My mother adored Judy and her ability to speak clearly. Whenever I called my mom, she asked me how Judy was doing. When I told my mom that I asked Denise to marry me, she asked me why I couldn’t marry a polio girl like Judy.

Judy loved being Jewish and insisted I attend services and rituals whenever possible. While living in Berkeley, she hosted lively and overly crowded parties celebrating Jewish holidays. At the 1982 Rosh Hashanah party, stuck in the corner of her small apartment, Denise and I decided to date each other.

I can’t enumerate the many ways Judy changed my life. Connecting us with David is undoubtedly the greatest. Although she is a fantastic communicator, Judy didn’t always warn people about what she volunteered them to do. One afternoon in January 1987, Denise called me at work, sounding somewhat freaked out. She had just received a call from one of Judy’s friends about a six-week-old baby that might need a home. Judy told her that Denise and I were considering adopting a child. Hearing that the baby was born on my birthday, I knew Judy would change my life again. Judy is David’s godmother.

Before my ability to talk on the phone became difficult, Judy and I spoke almost every Sunday evening. Many of our discussions were about attendants. She often criticized me for not using more assistance, especially when traveling for Wells Fargo. She warned me that I was putting too much stress on my body and that someday my spine might compress. Although I have no regrets about how I lived my life, I admire her astuteness.

Judy Heumann and husband Jorge Pineda. Photo by Rick Guidotti for Positive Exposure.

In the last few years, I sometimes felt jealous of Judy’s energy, continued travel ability, and the many international agencies, TV, and radio programs that continued inviting her to speak. Recently, on a San Francisco Bay Area working visit, Judy and I met face-to-face. She was proud that her work income covered her assistant services costs. I asked about her retirement plans. She reminded me that, unlike Californians with developmental disabilities whose attendants were paid for by the Regional Centers regardless of their income or assets, most people with disabilities and seniors who aren’t poor must pay their attendants out-of-pocket. 

In hindsight, she told me she had to work as much as possible. This realization revitalized my desire to advocate for new laws and regulations, ensuring that all people with disabilities and seniors can receive the excellent and affordable personal assistant services they need. Attendants must earn livable wages plus the benefits and support they need.

Throughout my life, many family and friends have died. Judy’s death feels different, more personal, and like the end of an era. I know the world will continue, justice will slowly prevail, and someday people will eliminate discrimination. It will never feel the same without Judy.

 Please give someone you love a big hug and hold them close!

____ 

Neil is the founder and CEO of Abilicorp, a business innovation consulting company whose mission is to start and promote disabled-owned businesses. Neil and his wife Denise have cerebral palsy and are part of  the team that helped make The Netflix Documentary called Crip Camp.