Advancing disability rights and leadership globally®

Remembering Judy Heumann: A Personal Reflection


MIUSA CEO Susan Sygall joins the world in grieving disability rights activist and dear friend Judy Heumann, reflecting on her life of activism, friendship, and global impact. Then, find details for joining Judy’s memorial service in-person or virtually.

By the time you read this, you will have seen many public tributes to Judy Heumann, from her friends and colleagues to Presidents of the United States, honoring her amazing life and the impact that she had on the world.

The thoughts that I want to share here are both professional and personal, although, as with many activists, those parts of my life are really just one.

I don’t remember specifically the first time I met Judy, probably in Berkeley, sometime in the 1970s, when she was part of a group of people forming the first independent living center, which was at that time a drawer in somebody’s file cabinet. Who knew that those people were planting seeds that would so dramatically change the world? I was an undergraduate student at the University of Berkeley, where I was also co-founding an organization, the Berkeley Outdoor Recreation Program (BORP), which ensures that people with disabilities have the same opportunities in recreation and sports.

Many years later, in 1981, after I co-founded Mobility International USA (MIUSA), Judy spoke to and met many people with disabilities from around world who came to MIUSA international exchange programs in Eugene, Oregon, to learn about, experience and share strategies for achieving disability rights. Our participants also felt Judy’s power from watching the 504 video, and hearing the story of the 504 demonstrations and sit-in that took place in San Francisco.

Four women seated next to one another in an otherwise empty conference room, smiling. Three women use wheelchairs.
Above: Susan Sygall (far left), Judy Heumann (third from left, wearing colorful scarf), and MIUSA alumni from Vietnam gather at a conference to advocate for disabled women with disabilities globally.

Judy was in Beijing when MIUSA co-organized an international disabled women’s conference in 1995. She also spoke to disabled women leaders from around the world who have participated in MIUSA’s ten Women’s Institutes on Leadership and Disability (WILD), which have been catalysts for women with disabilities to become global leaders.

I know that many of our MIUSA alumni from more than 135 countries are mourning Judy’s loss tonight, as they have very powerful memories of her presence and personal connections with them.

Some of my personal connections with Judy also involve MIUSA. A colleague just sent me a video of an interview with Judy, where she spoke with a devilish glint in her eye about how she met her husband Jorge. Jorge had come to Eugene, Oregon, on a MIUSA U.S. / Mexico leadership exchange program, and Judy was one of our featured guests. As Judy put it, she was attracted to Jorge’s shoulders, and he was clearly attracted to her as well. I must say, I did intervene a bit: I engineered an opportunity for Jorge to spend the evening at my home, where Judy was staying. I’m not sure how much English Jorge knew, or whether Judy knew much Spanish, but let’s just say it didn’t seem to matter. Judy reminded me many times of that night, and my contribution to her long and happy marriage to Jorge.

Judy laughs, holding a microphone, surrounded by a crowd of women, several seated in wheelchairs. They are under a large unseen canopy tent with tall green trees in background.
Above: Judy addresses disabled women leaders from countries around the world at MIUSA’s 2010 Women’s Institute on Leadership and Disability.

Another very powerful, personal connection that Judy and I had was that both of our parents had come to the U.S. from Europe because of Nazi persecution. For both of us, it was our parents who gave us our self-confidence, and who shaped the lives that we both pursued in terms of disability justice. Every time Judy spoke about her parents, or I spoke about mine, tears came to both of our eyes. It was just part of who we are and what we hold sacred.

Judy and I also shared a love for Judaism, and spoke much about Tikkun Olam, the Hebrew words for mending or repairing the world, a concept also held by many other people who feel spiritually moved to work for justice. Judy and I often would send each other “Shabbat Shalom,” messages, the Hebrew greeting shared at the beginning of Friday night religious services. As I write this, I can hear Judy calling me and asking me what my plans are for Passover? Who is coming over for the traditional Passover Seder, what was I making for dinner?

Judy called me Susie, a term that many of my Berkeley friends still use, which I find endearing, as it reminds me of a bold and beautiful time when many disabled activists gathered in Berkeley. The ideas formed there became the independent living movement and led to disability rights legislation and policy that has changed the lives of millions of people, not only in United States, but throughout the world.

Judy smiles at camera as she sits with a group of four women with apparent and non-apparent disabilities from different nationalities, races/ethnicities.
Above: Judy shares a joyful moment with other disabled women leaders from around the world at MIUSA’s 2010 Women’s Institute on Leadership and Disability.

There are many amazing activists from that time, too many mention here, but I know they know who they are as they read this. You may not know all their names. But Judy was one of those leaders, and she was able to capture their collective message and amplify it loud and clear.

In addition to her many accomplishments that are being shared in the news and social media today, I think Judy’s strongest legacy lies in her powerful words and her 24/7 work commitment to the cause of justice. Everyone who met Judy felt her passion. The best way we can continue Judy’s legacy is to carry on that work.

Judy also leaves a legacy of connections with countless people, with and without disabilities. I am almost certain that nobody knew more people around the world. We know that Judy’s presence and powerful words motivated activists and allies to pursue even more vehemently their strategies for disability justice. Many of us throughout the world are having similar thoughts and feelings about the times and moments we have met Judy and heard her speak.

Judy and Susan Sygall clasp hands in front of a banner that reads "UN Women". Both wear semi-formal attire and are seated in wheelchairs
Above: Judy Heumann and Susan Sygall reconnect at a UN Women conference.

I can feel Judy’s smile. I can see her eyes thinking about one million ideas at once. Judy was always on the phone or on Zoom, with a long line of people waiting to speak with her. But for me, and I have a feeling for many others, I always felt that she was just a text away, and I was just a text away for her, too.

On Friday, I heard Judy was in the hospital, and I sent her my Shabbat shalom message. I’m hoping that she received it that night, in some spiritual way. I hope she will feel the love and support of literally millions of people thinking about her and thanking her, missing her and loving her, as we wait until her live-streamed funeral on Wednesday to come together to express our respect and gratitude.

This is not the end of the story for Judy. Her movie will be released, her book will be read, her podcasts and Crip Camp will be shared, and a whole new generation of people will hear what a girl from Brooklyn accomplished.

Love you Judy. You could not have had a more powerful or impactful or meaningful life.

I know your parents are so proud of you, as I am proud to have been your friend, and will continue to be your friend.

I am sending love to Jorge, and all your family, friends, fellow activists and allies throughout the world.

Susie (Susan) Sygall
MIUSA (Mobility International USA)

Memorial Service Information

Wednesday March 8 at 10 a.m. ET
The family of Judith “Judy” Heumann invites the community to honor her life. Please find details on Judy’s website about the memorial service, which will be available to attend via livestream.

Author: Admin

Read Next

Susan Sygall with a group of 5 people gathered in front of a large yellow "POWER" sculpture/sign. Susan and the others hold up their arms in powerful flexing motion.

People with Disabilities are Needed in Global Careers

Date: 04/05/2024
A person sits in a manual wheelchair, but only her hand and dress are visible because the camera is close up. Her skin is dark and the dress covering her legs is a colorful African print., and around her wrist she wears a silver band watch. The person clutches a MIUSA logo notebook in her hand while simultaneously pushing the wheel of her wheelchair.

Where Disability-Led and Locally-Led Development Converge

Date: 03/21/2024

I Want to Go THERE! Don’t You?

Date: 02/12/2024
High school exchange students stand side by side against a brick wall, waving or smiling at the camera. They wear COVID prevention masks and one student uses crutches

MIUSA Milestones of 2023

Date: 01/09/2024
White male with blond hair blowing in the wind wearing dark glasses, holding white cane smiling in front of marina standing on stone and sand pathway.

Don’t trust yourself

Date: 09/29/2023

Advancing disability rights and leadership globally®

Also Search our NCDE Web Resource Library

Contact Us