Being Heumann: Judy Knew That Power was Meant to Be Shared

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.

 

History Doesn’t Preserve Itself.We Have to Decide if It Matters

Recently on Facebook, Senator Bill Frist shared a fascinating account of a Native American community that thrived in Tennessee’s Harpeth River Valley 1,000 years ago.

Think about that. A thousand years ago, people were building communities, raising families, developing traditions, solving problems, and creating a culture. They had stories worth telling. Today, we are still discovering who they were and how they lived.

Frist’s account made me think about another history that is in danger of being lost — the history of Americans with disabilities.

For generations, people with disabilities were hidden away, institutionalized, excluded from schools, denied employment, and treated as objects of charity rather than people with rights. But that is only part of our history.

There is another story. One of extraordinary courage, ingenuity, determination, and sometimes outrageous defiance. People with disabilities organized, protested, challenged laws, changed public attitudes, and demanded the right to participate fully in American life.

I was privileged to participate, along with Senator Frist and others in some of that history, particularly the development of federal disability rights legislation. I knew many of the people who made it happen. Some are gone. Others, like me, are getting old. Our memories, documents, arguments, victories, disappointments, and even our mistakes are part of America’s history.

And much of that history is disappearing before anyone bothers to preserve it.

That is why I am working with others to establish a National Museum of Disability History and Culture on the National Mall.

Not a museum about what society did for people with disabilities, but about what people with disabilities did for America.

Our contributions to civil rights, education, technology, transportation, employment, architecture, and community life have changed this country for everyone.

A thousand years from now, what will people know about us? Will they have to piece together our lives from fragments? Or will we have had the wisdom to preserve our history while the people who made it are still here to tell it?

We rightly devote resources to discovering and preserving the lives of people who lived a thousand years ago.

Surely we can find the will to preserve the history being made in our own lifetimes.

History doesn’t belong only to the powerful, the famous, or the people who could climb the stairs to enter the buildings where decisions were made.

It belongs to all of us.

And it deserves a museum.

Patricia Morrissey

Chair, Friends of the National Museum of Disability History and Culture

Funding for Human Rights Orgaizations in America Is Vital

American philanthropy has invested millions of dollars in advancing human rights worldwide to help people with disabilities, women, children, and others whose rights have been denied or ignored. It has supported organizations fighting discrimination, promoting inclusion, and holding governments accountable.

That is money well spent.

But I have a question for America’s major foundations and other entities that support human rights work: What about funding human rights organizations here at home, especially American organizations working to advance human rights internationally?

As I engage in conversations with human rights nonprofits in America, one thing is clear—most are struggling financially. This is verified in a 2026 report by the Center for Effective Philanthropy (cep.org). Sixty-six percent of CEOs of nonprofits report concern about financial stability; 30 percent report reduced staff size; 36 percent report ending 2024 with an operating deficit; 52 percent had three months or less cash on hand.

I have spent much of my professional life working to advance the rights of people with disabilities. I worked in Congress over a 20-year period, helping develop legislation including the Americans with Disabilities Act. I later served as Commissioner of the federal Administration on Developmental Disabilities in the U.S. Department of Health and Human Services. Today, at 82, I am serving as Interim Executive Director of the United States International Council on Disabilities (USICD).

I have watched disability rights move from the margins of public policy into the mainstream. I have also watched how quickly progress can be threatened when organizations lose the resources to defend those rights.

Rights do not protect themselves. Laws do not implement themselves. And good intentions do not pay the salaries of people who organize, educate, train, and advocate in the human rights arena.

Someone has to do the work.

For more than 35 years, USICD has worked to advance disability rights internationally, build relationships among advocates and governments, and promote the participation of people with disabilities in decisions affecting their lives.

This work is not limited to what happens overseas. Decisions made in Washington influence international development, responses to conflicts, humanitarian assistance, and the treatment of people with disabilities around the world.

American disability organizations have knowledge and experience that can help shape those activities. The Americans with Disabilities Act was the catalyst for the UN Convention on the Rights of People with Disabilities and the framework for training and advocacy that followed. Philanthropy underwrote this work enthusiastically as well as governments.

 In the past, USAID or the State Department funded human rights work. That is not the case currently.

Philanthropy, therefore, is vital. But consider what is happening in philanthropy itself.

Wellspring Philanthropic Fund, which has supported human rights and social justice organizations for 25 years, is completing its grant making commitments in 2026 and closing in early 2027.

Wellspring deserves recognition for its contributions. But its departure raises a serious question: Who will help sustain the organizations and movements that depend on long-term philanthropic investment?

I would like to see other major foundations, including those that have traditionally concentrated on international human rights, take a hard look at the American organizations whose work supports those same goals.

This is not an argument for taking money away from human rights organizations overseas. Quite the opposite. We need strong organizations in every country, including our own. We need partnerships that allow advocates to learn from one another, work together, and hold governments accountable.

Nor is this simply about keeping nonprofit organizations alive. Some organizations will close. Others will change. That is inevitable.

The real question is whether we are prepared to lose the experience, relationships, institutional knowledge, policy templates, and leadership that have taken decades to develop.

Once those resources disappear, rebuilding them will not be easy or cheap.

I am particularly concerned about the next generation of disability rights leaders.

Young people with disabilities need more than encouragement. They need opportunities to learn how government works, participate in policy decisions, build international relationships, and assume leadership positions. They need experienced advocates willing to mentor them and organizations capable of opening doors. Many of those are here.

Who will provide those opportunities if the organizations doing this work cannot afford staff? Nonprofit employees cannot simply volunteer their way through financial crises. Foundations employ professionals, invest in infrastructure, and plan for their own institutional futures. The organizations they support need those same things.

I respectfully ask major foundations to consider three critical actions.

1. Recognize U.S.-based human rights organizations as essential partners in international human rights work, not merely as domestic charities outside an international funding portfolio.

2. Provide meaningful general operating support. Funding a project while leaving an organization unable to pay its basic operating expenses is a poor investment.

3. Invest in leadership development, particularly for young people from communities whose rights are most at risk. That investment will pay dividends long after individual grants have ended.

None of these ideas is particularly radical. What is radical is for philanthropy to promote and support the importance of human rights abroad while allowing American organizations that defend them to disappear.

I have lived with cerebral palsy all my life. I know personally what disability discrimination looks like. I also know what happens when determined people organize, persuade elected officials, challenge established practices, and refuse to accept exclusion as inevitable.

That is how progress happens. It takes people, organizations, persistence, and money over time.

Philanthropy has an opportunity to help preserve what previous generations fought to achieve while preparing new leaders to carry that work forward.

I am not asking foundations to rescue every struggling nonprofit. I am asking them to recognize that protecting human rights requires a continuing investment in the organizations and people doing the protecting in America as well as overseas.

If American philanthropy believes human rights are universal, then invest in American nonprofits that do this work too.

 

Thank you.

Common Grounder

 

Where Do You Stand — Section 504, Texas vs. Kennedy

The September 23 decision in Texas v. Kennedy is a serious step backward for people with disabilities.

The federal court vacated the community-integration provisions in HHS’s 2024 Section 504 regulations, including the definition of the “most integrated setting.” Importantly, the decision did not repeal Section 504, change the Americans with Disabilities Act, or overturn the Supreme Court’s Olmstead decision. But removing these regulatory protections weakens the federal government’s commitment to ensuring that people with disabilities receive services in the most integrated setting appropriate to their needs.

And it raises a basic question: What happens next?

If the answer is more institutionalization, we should understand what that means.

Institutions cost money. People who live in them surrender much of the autonomy and control the rest of us take for granted—when to get up, when to eat, what to wear, where to go, what to do, and with whom to spend their time.

Communities may become less invested in inclusion. Community-based day programs and supported employment may shrink. Families who want a family member with a disability to remain at home may face an impossible choice: Who quits a job to provide support during the day?

And families with the resources to move may migrate to states that maintain stronger protections for community living.

If the federal government believes states will simply absorb the direct and indirect costs of this policy shift, think again.

If elected officials believe families will quietly accept fewer community options, think again.

Disability is not Republican or Democratic. People who need community-based services live in Republican households, Democratic households, independent households, and households that couldn’t care less about politics.

The answer is not to retreat from community living. The answer is to make community living work better.

We need creative planning to expand community-based services. We need honest research about what is working, what is failing, what services cost, and what families actually need. We need better housing, a stronger direct-support workforce, meaningful day programs, supported employment, transportation, and reliable assistance for families.

And we need to understand what institutionalization actually does.

Institutions concentrate control in the hands of administrators and staff. The people living there learn to survive within somebody else’s rules and schedules. Families worry from the outside. Communities lose the presence and contributions of people who should be their neighbors, coworkers, customers, friends, and citizens.

I wrote about this earlier this year because I know something about institutionalization personally. At 13, I spent six months in Shriners Hospital undergoing orthopedic surgeries. Even in a good institution providing excellent medical care, somebody else controlled virtually every hour of my day.

That experience stayed with me.

In 2026, we should be smarter than this.

The question for policymakers now should not be how to make it easier to segregate people with disabilities. It should be how to build community services strong enough that institutionalization is unnecessary.

Congress and state legislatures can also examine whether the community-integration protections contained in the 2024 Section 504 regulation should be written more explicitly into law, rather than leaving such important protections dependent upon changing regulations and administrations.

This should be a question for candidates as well. Ask them where they stand. Ask whether they support the right of people with disabilities to receive services in the most integrated setting appropriate. Then make your own decision at the ballot box.

There is a smart way to address the challenges facing people with disabilities and their families.

Going backward is not it.

Thank you.

Common Grounder

Please Help Me Do A Great Job

 Aloha,

It has been a while since I’ve written a post. I cracked my right femur in three places on July 13, a Friday. I was in a skilled nursing facility for over a month and a half. I am now home, thank God! Recovery is slow but going in the right direction. 

I have accepted an appointment as Interim Executive Director of the US international Council on Disabilities through December 31 of this year. It is an unpaid position.

I care about USICD. I have been on the board since 2013. I served as President from 2015-2023. 

My primary mission will be to make USICD’s virtual fund raising gala on December 3, 2026 a smashing success. Please visit our website at www.usicd.org. We will be honoring Ambassador Don Steinberg and Eric Rosenthal, Executive Director of Disability Rights International. We have great speakers lined up  

We appreciate donations; any amount will be appreciated. Individual memberships are $10. There will be no ticket fees this year. If you, your organization, or company would like to be a sponsor, options range from $1,000 to $25,000. 

USICD has spent 35 years bringing visibility to disability rights and helping others understand, promote, and work toward them. Now, this effort is most critical. 

Please help us. My new email is aedmorrissey@usicd.org. I would love to hear from you!

Pat Morrissey

Lonnie Bunch, Museums, and Affordability

Lonnie Bunch, Secretary of the Smithsonian, is leaving in December. I am beyond sad.

I heard Lonnie speak at the University of Hawai‘i. His remarks inspired me to join the effort to create a National Museum of Disability History and Culture. He reinforced something important: museums are not simply places where we store old things. They are places where we decide what—and whom—America remembers.

At a time when Americans are struggling with affordability, who cares about museums?

We should.

When families are being asked to do more with less, institutions that belong to everyone matter more, not less. Museums give ordinary Americans access to art, science, history and culture that personal wealth might otherwise determine. They are classrooms, laboratories and repositories of our shared history.

They are also a public investment. Generations of taxpayers built these collections and institutions. Neglecting them today can mean losing irreplaceable assets and paying much more tomorrow.

But we must preserve more than buildings and artifacts. We must preserve the whole story.

History is complicated. National museums should present evidence, context and different perspectives, including those that make us uncomfortable. Neither the political left nor the political right should decide which parts of our history disappear. Americans should be trusted to confront complexity and reach their own conclusions.

And if these institutions are truly national, everyone must be able to participate. That requires a renewed commitment to accessibility for people with disabilities—in buildings, exhibits, technology, communications and programs.

It also means recognizing disability as part of America’s history.

The struggle for education, employment, independent living, accessible transportation, technology and civil rights—including passage of the Americans with Disabilities Act—helped shape this country. Yet much of that history remains scattered, overlooked or invisible.

People with disabilities deserve full access to America’s museums. And America deserves a National Museum of Disability History and Culture.

Such a museum would not separate disability history from American history. It would finally put disability history where it belongs—inside the American story.

Affordability determines what each of us can buy. Public institutions determine what all of us can share.

Two Simple Questions

 

There are two simple questions that every candidate for public office should be asked before Election Day this November:

1. Do you support the Department of Justice memorandum that opens the door to greater institutionalization of people with disabilities?

2. Do you support transferring the federal special education program under the Individuals with Disabilities Education Act (IDEA) from the Department of Education to the Department of Health and Human Services?

Every candidate’s answers should be collected, published, and shared widely.

How politicians respond will tell us a great deal. If they are unfamiliar with these issues, perhaps they will be motivated to learn. If they understand them, voters deserve to know where they stand. Their answers will reveal whether they believe in inclusion, equal opportunity, and civil rights—or whether they are willing to accept policies that move our country backward.

I know people are busy. Organizations have competing priorities. But few actions could have greater long-term importance than documenting candidates’ positions on these two questions. The answers will tell us how our nation, our states, and our communities intend to treat people with disabilities for years to come.

The real issue is not simply disability policy. It is the kind of America we want to be.

Do we want a country that is open, inclusive, and committed to equal opportunity? A country where people with disabilities receive services in the same communities where everyone else lives, learns, works, and participates? A country that values choice, independence, and contribution?

Or do we accept a future in which people with disabilities are increasingly separated from their neighbors, educated apart from their classmates, and encouraged to live apart from their communities?

We must make our answer unmistakably clear.

We do not want to turn back the clock on disability rights.

We do not want to return to institutionalization.

We do not want children with disabilities educated separately simply because they have disabilities.

We do not want government policies that reduce choice, independence, or participation.

We do want people with disabilities to live, learn, work, and thrive alongside everyone else.

We do want communities enriched by the talents, perspectives, and contributions of people with disabilities.

The disability community has spent decades replacing segregation with inclusion, dependency with opportunity, and isolation with participation. Those hard-won gains should not be quietly dismantled.

Many people are also concerned that current federal policies increasingly classify people by perceived differences, emphasize those differences, and encourage separation rather than belonging. Whether the issue is disability or another characteristic, history teaches us that societies are strongest when they embrace pluralism rather than fear it.

As our nation marks its 250th year, we should reaffirm the principles on which America was built: liberty, equality, fairness, opportunity, and the belief that our diversity is one of our greatest strengths—not something to be hidden, isolated, or excluded.

If you belong to a disability organization, a civic group, a professional association, or a faith community, ask these two questions. If you are active on social media, share them. If you are a journalist, educator, sociologist, anthropologist, or simply a concerned citizen, help collect and publish the answers.

An informed electorate is the foundation of democracy. These two questions will tell us not only where candidates stand on disability policy—they will tell us what kind of country they hope to build.

The future of disability rights—and, in many ways, the future character of America—depends on the answers.

Thank you.

Common Grounder


Patricia Morrissey