A woman in a wheelchair speaks into a microphone held by a woman standing by her side.

Grieving With Grace

A remembrance of disability activist Stacey Park Milbern

Stacey Park Milbern touched countless people with her prolific activism for disabled people, especially people of color and LGBTQ+ people. She held leadership positions in disability organizations for most of her life—starting as a teenager, when she was appointed by the governor to the North Carolina Statewide Independent Living Council, all the way to her creation of the Disability Justice Culture Club in the San Francisco Bay Area just a year before her death. Milbern passed away on May 19, 2020, her thirty-third birthday, as a result of complications from surgery. She never stopped pushing for justice.

In 2021, the world searched for how to say goodbye to someone more than ever before.

Stacey and I worked together on one of the last projects of her life—a campaign built around the award-nominated documentary Crip Camp that pushed for the recognition of disability as a social justice issue. Stacey died just two days after the launch of the campaign’s signature program, a sixteen-week virtual summer camp for disabled people and their allies. The camp was Stacey’s dream and creation.

Our team of organizers was just four people, all of us disabled women of color. Suddenly, we were down to three. We were absolutely reeling. How could we possibly continue this work without Stacey? But the despair quickly turned to adrenaline. How could we possibly quit this work now, after all that she did?

“Our team of organizers was just four people, all of us disabled women of color. Suddenly, we were down to three.”

We rallied together with other disability activists, many of whom had known Stacey for a decade or more, and put together a beautiful car caravan around Oakland’s Lake Merritt to celebrate her life. The camp we organized drew close to 10,000 registrants and earned rave reviews. Our team carried on. But not without side effects. Our work was filling an important need, but behind the scenes, we were struggling with our mental health and feeling burned out. We felt like there was no way to stop. If we did, we would somehow betray Stacey’s dream and dishonor her memory.

But deep within ourselves, we knew that our grief-fueled pace was unsustainable. To continue the work Stacey had lived for, we also needed to take care of our own bodies. Finally, we gave ourselves permission to stop. We all took a vacation. When we came back, we slowed down.

This year has been a time of healing, joy, and growth for our team. We transformed into a budding company, LaVant Consulting, with a mission to push for inclusion for disabled people of color. Now, as 2021 comes to an end, eighteen months after Stacey’s passing, we honor her memory by taking breaks, moving at a sustainable pace, and giving ourselves grace.

Share a story of remembrance about Stacey and her legacy for the Disability Visibility Project at bit.ly/staceytaughtus.

By Sofia Webster

(she/her)

Sofia Webster is an Ecuadorian American accessibility expert, based in Sacramento, California. She is Impact Officer at LaVant Consulting Inc., a communications firm dedicated to helping companies and brands “speak disability with confidence.” Webster was also social media manager for the award-nominated documentary Crip Camp.

Brooke Anderson

(she/her)

Brooke Anderson is a freelance photographer and photojournalist based in the Bay Area, covering movements for social, economic, racial, and climate justice. Among other places, her images have appeared in such publications as YES! Magazine, Colorlines, Grist, San Francisco magazine, SFist, Oakland Post, East Bay Express, North Bay Bohemian, KQED, and featured in exhibits by CultureStrike, Yerba Buena Center for the Arts, Studio Grand, and Survival Media Agency.