Stacey Milbern, a Warrior for Disability Justice, Dies at 33
Ms. Milbern, who identified as queer, called out the mainstream disability movement for marginalizing people of color and nontraditional gender identities.
By Neil Genzlinger
June 6, 2020
A few years back, Stacey Park Milbern had a problem. She was trying to get someplace in her wheelchair, but there was a step four or five inches high. Hoping to improvise a ramp, she asked herself, “What do I have that fits that exact size?”
“I used my two tennis shoes to fill the gap,” she said, and she was able to conquer the step.
She told that story in a 2017 interview with the online community Disability Visibility Project to illustrate something she had learned about herself and others with disabilities: They are resourceful.
“The world literally isn’t made to house us, it feels like sometimes,” said Ms. Milbern, who had muscular dystrophy. “So we get to be really creative problem solvers and, I think, aren’t constrained to boxes.”
That creativity was on display in March, when she and a few friends who had formed a group called the Disability Justice Culture Club set about helping homeless people in the Bay Area who had no resources to protect themselves against the new coronavirus.
Working out of Ms. Milbern’s home in East Oakland, they created homemade kits that included masks, vitamins, gloves and mix-it-yourself hand sanitizer, and distributed them at homeless encampments.
“Oftentimes, disabled people have the solutions that society needs,” Ms. Milbern told the San Francisco public radio station KQED. “We call it crip — or crippled — wisdom.”
She was making those kits even as she was dealing with some significant health problems, she told KQED. Two months later there were complications during a surgery, and she died on May 19 at a hospital in Stanford, Calif., her friend Andraéa LaVant said. It was her 33rd birthday.
Through her organizing, writing and speaking, Ms. Milbern was a prominent and widely respected figure in what is known as the disability justice movement, in the Bay Area and beyond. Since her death, friends and admirers have posted tributes on social media under the hashtag #StaceyTaughtUs. Some posts mention a book she recommended, others the importance of self-worth or cooperation or thinking big.
That last quality was something experienced firsthand by Jim LeBrecht, who with Nicole Newnham directed the recent Netflix documentary “Crip Camp: A Disability Revolution.” Ms. Milbern, along with Ms. LaVant, created a campaign to broaden the impact of the film.
“She focused our campaign towards those in the disabled community whose important contributions and teachings were often overlooked,” Mr. LeBrecht said by email, and developed workshops on self-care, sexuality, the history of disabled black activism and other topics.
“Here’s the point,” he said. “She would come up with ideas for our impact campaign that seemed outlandishly beyond imagination or possibility, and then pull it off in splendid fashion.”
Stacey Park Milbern was born on May 19, 1987, in Seoul, South Korea. Her father, Joel, was in the United States Army, and her mother, Jean (Park) Milbern, was self-employed.
Ms. Milbern was mixed-race — her father was white and her mother Korean — and identified as queer. She wore those labels with both pride and good humor. On a blog she maintained when she was living in North Carolina in the late 2000s, she described herself as “just your everyday queer corean girl living in the south.”
In a 2015 interview with her friend Dolores Tejada, she recalled an incident from fourth grade that first underscored for her that she was different. She still walked at the time, though unsteadily, and had fallen in a stall in the girls’ bathroom. Three classmates came in, and as she sat on the floor puzzling over how to get back up, she heard them chattering about frivolous stuff — “boys and bras and all of these girl things,” she said.
“It was just like, ‘Oh my gosh; they’re from another planet,’” she said. “Or I’m from another planet. We have a totally different reality.”
Her disability awareness grew from there, as did her activism. She served on several commissions in North Carolina and pushed to have disability history added to the high school curriculum. And she started writing poetry and blog posts on disability rights. She assailed Jerry Lewis’s annual telethon for muscular dystrophy as promoting a pity-based view of disabilities. She called out the mainstream disability movement for marginalizing people of color and nontraditional gender identities.
Ms. Milbern received a bachelor’s degree at Methodist University in 2009. She lived at home until age 24, when she moved to the Bay Area to live on her own. In 2015 she earned a master of business administration degree at Mills College in Oakland.
Among her areas of concern was medical care for people with disabilities — not just securing it, but examining doctors’ bias. She spoke out about unnecessary surgery, something she thought she was subjected to when younger.
“Is medicine about quality of life,” she asked in an interview posted on Vimeo three years ago, “or is it about social control and perpetuating this idea of a ‘good’ body?”
When Pacific Gas and Electric, the California utility, shut down power to thousands of households last year as it tried to deal with wildfires, she helped organize a mutual-assistance effort called Power to Live to distribute generators and otherwise ensure that those who needed electricity for a ventilator or other medical devices were not cut off.
Shortly before her death, she posted a YouTube video expressing concern that people like her who use ventilators might be in danger of having their equipment taken away during the coronavirus crisis, and that people with disabilities would not receive equal access to care if they got the virus.
In addition to her parents, Ms. Milbern is survived by a sister, Jessica Milbern; a brother, David; and her grandmothers, Beulah Milbern and Kim Kwee Rae.
In the 2017 interview, Ms. Milbern spoke about her hopes for the future.
“I would want people with disabilities 20 years from now to not think that they’re broken,” she said. “You know, not think that there is anything spiritually or physically or emotionally wrong with them.
“And not just people with disabilities, but queer people, gender nonconforming folks and people of color. And all of the people I think that society really pushes down and out.”