Because of Judy: The Woman Who Showed Us What Was Possible

Three years ago, we lost disability activist Judy Heumann. And the truth is, the disability community still feels that loss every single day.

For disabled women—especially those of us living rare—Judy isn’t just a historical figure. She’s our icon. Our guide. A true trailblazer. One who carved her own path and many more paths for marginalized communities. The person whose work shapes the way we move through the world, advocate for ourselves, and show up for each other.

Frankly, we have lived our entire lives in a world shaped by Judy’s work. A world where we have rights. A world where accessibility exists, even if it’s still far from perfect. A world where people living with disabilities have a seat at the table.

But that world didn’t just happen. Someone had to demand it. Those rights didn’t appear out of nowhere. They exist because Judy refused to accept a world that excluded us.

Before Judy, disability was largely treated as something to hide. Disabled children were often separated from their peers. Public spaces were built with no expectation that we would ever be there. Transportation, education, and workplaces were designed as if people living with disabilities simply didn’t exist.

At a time when disability was widely treated as something to hide or be ashamed of, Judy refused to accept that. She spent her life forcing the world to see disabled people for what we are: human beings deserving dignity, access, opportunity, and community.

She once said:

“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives.”

And she didn’t just fight quietly. She organized. She protested. She challenged systems that told people living with disabilities to stay small, stay separate, stay silent.

Because of Judy and the activists who fought alongside her, people living with disabilities today grow up knowing something that generations before us were never told: we belong here.

She also reminded the world of something that should feel obvious, but still needs repeating:

“Part of the problem is that people don’t think disability is a civil rights issue.”

For Judy, it always was. And that belief fueled everything she did.

But Judy’s impact wasn’t just in policy or protests. It was in people. Anyone who spent time with her will tell you the same thing—Judy had a way of making you feel seen. Truly seen. She made people feel like they mattered. She listened. She made space. She treated every person in our community with respect and curiosity, whether they were a longtime advocate or someone just beginning to find their voice. 

For the first time, many of us could feel pride in our identities. We could see disability not as something that diminished us, but as something that connected us.

She believed deeply in collective power. In community. In the idea that when people living with disabilities come together, change becomes inevitable.

Judy was on the front lines of historic actions for disability rights, including the 504 Sit-ins in 1977 that demanded enforcement of Section 504 of the Rehabilitation Act, and the 1990 Capitol Crawl that brought national attention to the need for the Americans with Disabilities Act (ADA). She demanded not just policy, but real access, ensuring that people living with disabilities could enter public spaces, attend school, work, and participate fully in society. Judy showed the world that demanding access and claiming your rights could not be separated—they were one and the same.

Maybe the words we hold onto most from Judy are the ones that still guide our community today:

“We are not done yet.”

Because the reality is, the work she started is far from finished. People living with disabilities are still fighting for equity in accessibility, healthcare, education, employment, and systems that recognize our lives as valuable.

But because of Judy, we’re not starting from nothing. We’re starting from a movement. And we’re continuing that fight for equality for all.

And she reminded us often:

“Change never happens at the pace we think it should.”

But that never stopped her from pushing forward.

In her 75 short years with us, we learned from the remarkable human, Judy Heumann, that we are all human, and we all deserve rights.

We can’t wait to see a reenactment of her legacy in the Being Heumann film expected to be released later this year, reminding us all of her lasting impact.

This International Women’s Day, we honor and celebrate Judy not just as a disability rights icon, but as a woman who changed the course of history for millions of people around the world.

Kelly and I hope that that spirit lives on through Ladies Living Rare every time a disabled or rare woman shares her story, speaks her truth, or refuses to shrink herself to make others comfortable.

Because the world Judy fought for—the one where disabled people are visible, valued, and heard—is still being built. And we’re proud to be part of the generation continuing that work.

Because of Judy, we know what’s possible. And like she always reminded us:

We’re not done yet, and we’re just getting started.

With love always,

Avery