The Late Patty Berne Was a Visionary Leader in the Disability Justice Movement

I was in the middle of writing an email to my friend Patricia (Patty) Berne when I got a text message from our mutual friend. “Come to the hospital quickly,” they said. “Patty’s dying.” My first thought was, ‘But that’s impossible. We’re right in the middle of a conversation.’

I knew that Patty had been sick, but it didn’t seem possible to me that they might die. Patty’s impact on me and the disabled world I live in was simply too huge. I couldn’t imagine the planet without them. Born disabled, Patty was told as a child that they would not live past 16 years old. This prediction was pessimistic, and wrong. Patty grew up to live a full life, and changed disability history. They were a visionary artist and one of the primary architects of the Disability Justice movement, which connected the struggle for disabled liberation with other fights for freedom for the first time in the early 2000s.

Patty died in Berkeley, California, on May 29. Just a few weeks later, on July 3, Congress passed the “One Big Beautiful Bill Act,” which proposes cutting Medicaid spending by $1 trillion. These cuts will likely force states to slash home- and community-based services, like personal care attendants, that disabled people need in our fight to stay out of institutional settings. It feels like many of the advances that Patty and other disabled activists have struggled to achieve over the past 50 years might be unraveling, which makes my grief sharper and more overwhelming.

“I was truly devastated when I heard the news,” said Lateef McLeod, a disabled activist and scholar who has performed with Patty since 2007. Patty “was a phenomenal leader and true friend. I would describe Patty as the mother of disability justice and this second wave of the disability movement.”

The first wave of disability rights organizing in the 1970s-1990s led to the passage of the Americans with Disabilities Act, as well as other similar important legislation around the world. However, it fell short of examining how racism and other forms of oppression play a role in the subjugation of disabled people, or how we contribute to other movements. In the early 2000s, Patty gathered with a group of other disabled people in Berkeley, including the late Stacey Milbern, Mia Mingus, and Leroy Moore, to tackle this issue. Those conversations led to the second wave of disability activism, and a new movement that centered a much broader array of voices and highlighted the unique skills of disabled people such as our resilience, adaptability and capacity to care for each other.

“Patty brought together a movement that centers the struggles, brilliance, and beauty of disabled people,” said Patty’s longtime collaborator and chosen sibling Mordecai Cohen Ettinger. “That movement understands disabled people expansively, not only as those who use technology for mobility assistance, but also neurodivergent and mad people, as well as those who have been hurt in climate chaos, survivors of state violence and incarceration.”

As a young person, Patty drew on their experiences as a Japanese-Haitian, queer, and nonbinary person to build power for Haiti and Palestine, and for sexual violence survivors. Later, Patty became the co-founder and longtime executive and artistic director of Sins Invalid, a disability justice-based political education performance project, where they directed 11 major performances, co-produced two documentaries, and globally trained thousands.

Patty knew that to be disabled is to live close to death. Just a few months before their passing Sins Invalid mounted a performance called “Stages of Grief,” which dealt with mourning the impact of climate crisis on disabled communities, as well as celebrating our expertise for adapting to this era of cascading emergencies.

“Just as each component in earth’s ecosystem plays a vital role in supporting everything around it,” Patty wrote in a 2019 essay, “so do each of us have an essential role to play in sustaining our communities, our environment, our planet. In this time, people need strength models. Strength isn’t just about momentary power to jump building to building, it is also endurance to handle what is less than ideal. It’s the gritty persistence that disabled people embody every day.”

On my way to the hospital to say goodbye to Patty, I picked a rose from my garden. I wanted Patty to have something sweet to sniff when the nurse removed their respirator, to combat the institutional odors. In the weeks since Patty’s death, the bush which the rose came from has been blooming wildly. Each blossom is a slightly different hue of yellow, pink, white, or red. Some blooms are enormous and some are tiny.

One of Patty’s most central teachings was how valuable each of us are, with all our complications. “A Disability Justice framework,” Patty famously wrote, “understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them.”

It’s easy to see this in an unusual rosebud or a delightfully crooked branch, but it is sometimes harder to appreciate my own idiosyncratic, chronically ill body, or my quirky learning disabilities. Patty helped me to love my body and mind just the way I am.

As disabled people face the brutal prospect of historic Medicaid cuts, we can draw strength from Patty’s legacy. “[W]e know through our bones,” they once said, that there have always been disabled people “visioning a world where we flourish, that values and celebrates us in all our myriad beauty.”

There will be a Celebration of Life for Patty Berne on August 9, 2025. This gathering is a hybrid event at the East Bay Church of Religious Science in Oakland, California, and via livestream at 3:00-6:00 pm PT | 5:00-7:00 pm CT | 6:00-9:00 pm ET. It is lovingly hosted by Patty’s family.