Thanks to my friend, Dr. Raphael with the Center on Disability Studies at the University of Hawaii, I had the privilege of holding an advance screening of Being Heumann, the film about Judy Heumann’s extraordinary life. When the film was over, I felt inspired, emotionally drained, and exhausted. It is a powerful film. But then, Judy was a powerful woman.
I knew Judy for 40 years. We worked together, sometimes agreed, sometimes disagreed, and always shared a fundamental conviction: people with disabilities belong everywhere decisions are made about their lives.
The film captures Judy’s determination, her extraordinary ability to organize people, and her refusal to accept the notion that people with disabilities should be grateful for whatever society was willing to give them.
But what struck me most was something that I believe distinguished Judy from many other leaders: She understood that real power comes not simply from having it, but from sharing it.
Judy was a human Rolodex before anyone dreamed of putting a contact list on a cell phone. She knew everybody. More importantly, she remembered everybody. She knew their strengths, their weaknesses, their connections, and what they might contribute to advancing disability rights.
She understood something that many political leaders never learn: not everyone has to march in the street, testify before Congress, or command a microphone to make a difference.
Some people could organize. Some could write. Some could raise money. Some could open doors. Some could persuade an elected official. Others could make a phone call at exactly the right moment.
And some could simply wait.
Judy understood that even waiting someone out could be a strategy. Not every battle had to be won today. Sometimes the smartest thing was to keep the pressure on, maintain relationships, build alliances, and wait until the political circumstances changed. Patience was not surrender. It was another weapon in her arsenal.
She was relentless, but she was also strategic.
I spent nearly 20 years working on Capitol Hill, helping shape disability legislation, including the Americans with Disabilities Act. I understood the importance of votes, committee hearings, negotiations, and political compromise. Judy understood those things, too. But she brought something else to the table: the organized voices of people whose lives would be changed by those decisions.
And she made certain those voices could not be ignored.
Judy could be demanding. She could be impatient. She could drive people crazy. I suspect she would have considered that last observation a compliment.
But she was also willing to learn. She came to understand that leadership was not about being the only person with influence. It was about helping others acquire influence of their own.
That is an extraordinary lesson, particularly today.
Too many organizations and movements become dependent on a handful of recognizable leaders. Too much energy goes into protecting positions, controlling decisions, and determining who gets credit. Judy certainly knew how to use her own considerable influence, but she also understood the necessity of building a movement that was bigger than any one person.
Her Rolodex was not simply a collection of names. It was a network of possibilities.
The film also reminds us that progress was neither inevitable nor easy. Rights that seem obvious today were won through confrontation, political maneuvering, personal sacrifice, and an enormous amount of persistence. People put their bodies, reputations, careers, and relationships on the line.
Watching that history unfold was exhausting because I remember how hard so much of it was. And because I know how much of that work remains unfinished.
Judy is gone. So are many others who helped build the modern disability rights movement. We cannot assume that their accomplishments will survive simply because they were once written into law.
We are already seeing how quickly hard-won protections can be challenged, weakened, or reinterpreted.
That makes the lessons of Judy’s life particularly urgent.
We need people who are willing to fight. We need people who understand how government works. We need people who know when to compromise and when to refuse. We need people who can bring together individuals who don’t particularly like one another but who recognize that they share a common objective.
And we need leaders who are not afraid to share power.
I have spent much of my life working inside government while Judy spent much of hers pushing government from the outside. Both approaches were necessary. Neither could have accomplished as much alone.
That is another lesson worth remembering. A successful movement needs insiders and outsiders, agitators and negotiators, impatient activists and patient strategists. Judy understood that there was a place for all of them.
I hope everyone who sees Being Heumann comes away appreciating Judy’s courage and determination. But I hope they see something more.
Judy did not simply want to change laws. She wanted to change who had the power to make them.
And she understood that the next generation had to be prepared to exercise that power.
For me, the film was more than a tribute to a remarkable woman I knew for four decades. It was a reminder of what a determined group of people can accomplish when they refuse to accept exclusion as inevitable.
It was also a warning.
History does not protect itself. Rights do not defend themselves. And movements do not survive on memories of great leaders.
We honor Judy best not by putting her on a pedestal, but by doing what she did: finding people, recognizing what they can contribute, bringing them into the fight, and giving them the opportunity to lead.
Judy knew that everyone had something to offer.
The question for the rest of us is whether we are smart enough to recognize it — and generous enough to share the power to make it happen.
