Coronavirus: How These Disabled Activists Are Taking Matters Into Their Own (Sanitized) Hands

Members of the Disability Justice Culture Club at Stacey Milbern's house in East Oakland: Jay Salazar (pink shirt), Dana Garza (front), Patrice Strahan (black cap), Charley Bowden (tie dye), and Stacey Milbern (white shirt). (Courtesy of Stacey Milbern)

Stacey Milbern never imagined she'd be making large batches of hand sanitizer in her kitchen.

But over the last week, as the spread of the coronavirus has hit the Bay Area — and the world — Milbern and four other volunteers, all of whom identify as disabled, queer people of color, have produced nearly 100 anti-coronavirus kits, and are distributing them to people living in Oakland homeless encampments.

Along with the hand sanitizer — which is 90% rubbing alcohol mixed with glycerine and aloe vera — the kits include disinfectant and an emergency vitamin mix, all made from scratch by members of the group in Milbern's East Oakland home (in consultation with a nurse practitioner), as well as an N95 respirator mask and gloves.

"We are particularly concerned with people in encampments who don’t have access to soap and water," said Milbern, who has muscular dystrophy and uses a ventilator to breathe.

Many in the disabled community are all too familiar with feeling isolated and surviving in crisis mode, she said, when resources and support are in short supply. Her small group, which calls itself the Disability Justice Culture Club, wanted to use that DIY know-how to help their own community and other underserved populations.

"Often times, disabled people have the solutions that society needs. We call it crip — or crippled — wisdom," said Milbern, 32, who has a day job as a human resources specialist. "We know how infections spread and how to properly wear a mask and wash your hands."

Charley Bowden pours handmade hand sanitizer into small bottles. (Courtesy of Stacey Milbern)

Milbern said the kits, distributed in partnership with other community groups, have been well received, and now they're struggling to keep up with demand. She said they had hoped to create more than double the number of kits by now, but have had trouble finding enough raw materials at the 30-some stores they've gone to in recent days, where shelves have been swept clean by frantic customers hoarding supplies.

"I think it's really discouraging right now to see that," she said, noting that the overwhelming focus seems to be on personal safety, not the well-being of the larger community. "Really, what it takes to flatten the curve is collective action and collective commitment. Interdependence is going to be what saves us, and COVID-19 is the extreme example of this.”

Milbern also has her own health to worry about. She was recently diagnosed with kidney cancer, and on Monday found out that her surgery to remove it, scheduled for later this week, had been postponed because of shelter-in-place orders.

"My surgeon said even though my cancer is fast growing, I can survive another 30 days. But I likely wouldn't survive getting coronavirus," she said in a text message later that day. "It didn't hit me it was that serious/deadly to me personally. I'm really worried for myself and [my] disabled friends."

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As the outbreak spreads and services grow scarcer, she said her community is facing the real threat of having limited access to dialysis and other life-saving treatments, and not being able to get the medication and basic necessities they need to survive.

Last fall, in the midst of the massive PG&E power shutoffs, KQED wrote about a grassroots mutual aid campaign that Milbern helped lead to distribute critical supplies to disabled people in the region who had lost their electricity.

The group's anti-coronavirous kits ready for distribution. (Courtesy of Stacey Milbern)

This time around, she said, her group wanted to expand its efforts beyond the disabled community and focus on vulnerable populations more broadly, particularly in low-income communities of color.

"We realized that the people who need us the most, we were still not reaching them," she said.

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In just the last few days, in addition to distributing kits, the group has also set up another mutual aid effort to provide food and care support to disabled people in need, with close to 30 already requesting assistance, and more than 160 volunteers signed up to help, Milbern said.

She acknowledged, though, that the effort is only reaching a tiny fraction of the many people in her community who need the most support and are too often neglected, especially during times of crisis.

"It is such a painful experience to be left behind or disregarded," she said. "I have experienced feeling neglected by systems and society, and I don't want that to continue. If I can use my skills developing care networks to keep someone a little more safe, it was all worth it."

To receive or provide help, or donate supplies or money, visit the group's Facebook page.

Click here and here for a list of Bay Area organizations serving people with disabilities.