What Disability Justice Activist Stacey Park Milbern Taught Us

Stacey Park Milbern was an expert at organizing people. A self-identifying queer disabled woman of color, she organized an effort to help her move from North Carolina to the Bay Area so that she could live independently as a disabled person.

Stacey was a well-known leader within the disability justice movement. And her activism extended beyond people living with disabilities and to other communities that are often excluded — people of color, queer folks and people living on the streets. She passed away this month at the age of 33.

Guest: Andraéa LaVant, Stacey’s friend and co-impact producer on the new Netflix documentary “Crip Camp”

Tap the links to see conversations with Stacey from Sins Invalid, Disability Visibility Project, and the Barnard Center for Research on Women.

Below is a transcript of the episode.

Katayama: Stacey Park Milbern was organizing for people with disabilities up until she passed earlier this month and she’d been doing that ever since she was a teenager back in North Carolina where she grew up. But for the past few years, she was here in the Bay Area pushing the boundaries of disability activism itself and making sure that her work included those who are usually left out.

Milbern: There’s a lot of conversation to be had to, I think, about all the ways that ableism and racism and classism and heterosexism and all forms of oppression really work together to keep people out.

Katayama: Stacey Park Milbern died from complications from surgery on her birthday. She was 33. Over the past week, activists in the Bay Area and all over the country have been mourning Stacey. So today we’re remembering her, too. I’m Devin Katayama, welcome to The Bay.

LaVant: She was, a lot of people would say, a leader. She kind of encompassed all of it. You know, sometimes there’s like a lead from the front, lead from the middle, lead from the back. And she was just somehow able to do all of that.

I’m Andraéa LaVant and I was a very, very close friend and also a business partner with Stacey. Stacey grew up in North Carolina, you know, super loved, and she has a brother and sister that love her dearly that I recently got to meet. She grew up in an evangelical Christian home and so dealt with and processed through just her own acceptance.

Southern Roots

Katayama: And so in North Carolina, how did Stacey get so interested in disability justice issues?

LaVant: I think that all of us that are really steeped in the disability justice movement or even the disability rights movement have this, some sort of moment, like epiphany, you know, revelation of like, wow, I didn’t even know that this existed.

Milbern: I walked until about middle school and then started using a manual chair and then scooter and then my high school used a power chair. As strange as it sounds, throughout that whole time, I never really identified as being a person with a disability.

LaVant: So she talks about how she attended an event and she heard Judy Heumann speak who is really considered, kind of, the mother of just the disability rights movement and just the power there.

Milbern: So when I went to that [first conference], I was like, holy crap, I’ve been working so hard my whole life to be like everyone else and I’m still different and I can’t figure out why. And now it all makes sense. Like, I have a disability.

Katayama: What were some of the earliest projects that Stacey worked on?

LaVant: So Stacey started, you know, in kind of the disability space specifically the independent living movement as a teenager. She was one of the co-founders of the North Carolina Youth Leadership Forum, which is a training and opportunity for young people with disabilities. And then, she also had a governor appointed position by 18, the statewide independent living council.

Katayama: How did Stacey come to realize she wanted to move out of North Carolina and come to the Bay Area?

LaVant: So, Stacey, you know, she lived in North Carolina until she was 24. She lived at home because, you know, for so many of us with disabilities that are dependent in terms of care that was provided by her family. And North Carolina also didn’t necessarily have the programs in place, the resources in place, the funding in place to support the life that she wanted to live. The independent living movement really started in the Bay Area and Berkeley and the underlying or overlying piece is that she wanted to build a life of independence.

‘Epitome of Interdependence’

Katayama: So can you tell me about that actual journey? Like, how did she make that happen?

LaVant: Actually, she and a friend did a fundraiser to move. She was the epitome of interdependence. We help each other in order to live. And so when she moved out there, she didn’t have, you know, services in place right away. And so she had friends that were helping with her personal care. She had a friend helping her find an apartment and things of that nature. Yeah, it was a grassroots effort for sure and obviously got to build her her dream.

Katayama: Stacey ended up in the East Bay. She worked as the director of programs at the original Center for Independent Living in Berkeley. The East Bay is also where she founded the Disability Justice Culture Club, and her home in Oakland became a meeting space, especially for queer people of color with disabilities. She thought of her work as intersectional. She even organized mutual aid in response to COVID-19, distributing masks and gloves to people living in homeless encampments.

LaVant: Stacey was far more than just disabilities. She identified as a queer, disabled woman of color. She really was centering intersectionality. And even beyond that it was the voices within the communities that are often not considered.

Disability Justice

She was one of the curators of the disability justice framework, which basically it picks up where disability rights left off. And that is the disability rights movement was a very white-centered, male-centered movement. And disability justice says there are still within the disability space, when people come as their whole selves, there are gaps and there’s still oppression bearing.

Milbern: Victims of police violence are 50 percent people with disabilities, if not more. Or if we look at the special education system, it’s not the individual special education student, but we can see how special education becomes continued segregation for so many black and brown students.

LaVant: She was very much about not just centering disabled people, but centering black indigenous people of color, queer black and indigenous people of color. And so that is where she found community. And that was what was so groundbreaking about what she did.

Katayama: So knowing that this was Stacey’s framework, I know you and Stacey worked closely these past few months as co-impact producers of the Netflix documentary “Crip Camp.” What was it like to work with her?

LaVant: It was … . We were living the dream.

TRAILER: When Woodstock was happening, I remember being at my grandmother’s listening on the transistor radio and saying, wish I could go, wish I could go, wish I could go. And then when I went to Jened, it was like there I was, I was in Woodstock.

LaVant: And we had decision-making power. You know, a lot of times we talk about bringing people to the table, bringing disabled voices to the table. But you bring them there and then what do you do with them? And so in this, it was we had an opportunity to shape and taking the film and bringing it into a broader social justice space and having conversations with people that may center black people, that may center trans rights or may center whatever and go, OK, how can we come together and and think about what it looks like with disabilities as a part of that.

We would get off calls and she would call me after we had a Zoom call and she was like, what just happened! Oh, my gosh did we just do that? Did we just talk to that person? We always would have to have like a debrief at the excitement?

And I told you, at the end of every day with our team, and specifically with her, I always did an, OK, what was our win of the day. It would be when we would say: No, you could not do an all white panel. You know, you could not have an all white event. Those were our biggest wins, I think. Because it was, again, bringing the things that she stood for, that we stood for, and having them be acknowledged and beyond being acknowledged to actually, like, they had to happen. So that’s what was really cool.

‘Always Dream Bigger’

Katayama: Did you learn things about Stacey through working on this dream project with her that you didn’t know about before?

LaVant: Well, I think I learned the most, especially now, because I’m continuing on in this role, is just the boldness that she had.

It was always dream bigger, you know?

Katayama: Yes.

LaVant: Yeah. Can we ask for this? I’m like, oh gosh, that feels like a lot. I don’t know if we could do that. And, you know, she just always had, you know, it was always dream bigger.

Katayama: How did her relationship and her ideas around her own disability evolve over the years?

LaVant: She talks about that. You know, talked a lot about that, just, you know, acceptance of herself and loving herself and knowing that she … I mean, it’s knowing you’re worthy. And I think the other big thing that we talked about that I hadn’t thought about as much was just the opportunity to make mistakes. Because everybody else in life gets the opportunity to, you know, make mistakes. You go out on your own, but because disabled people are often sheltered and, you know, other people are making decisions for us, we don’t have those opportunities to live completely wholly in that way. And that’s what I also loved about her, is like, for many of us disability progresses and new things come into play and we’ve got to wrestle with what that looks like and resting and self care. And in all of those things that I learned a lot from her.

Katayama: What do you remember most about Stacey?

LaVant: Oh, my goodness: her voice. She had just the sweetest and the best voice. It was, hi my love, you know, good morning my love. There was always this love and genuineness always.

Milbern: I laugh at myself sometimes because I remember a few years ago there was a place without a ramp. The step was just big enough that I couldn’t do it myself, maybe four or five inches. So I took off my shoe and I used my two tennis shoes to fill the gap and then made a ramp out of it and was able to get up the steps. So just things like that, like nobody would ever think, what do I have that fits that exact size? So … just things like that, I really appreciate that. The creativity that people with disabilities have just from everyday experiences.

LaVant: Even if we had a rough day or a rough meeting or, you know, I was frustrated about something…she always…so personally as a friend that’s absolutely what I remember.

Powerful and Beautiful for Who We Are

The quote that a lot of people are putting when they’re talking about Stacey is the quote where she says, you know, I want to leave a legacy of disabled people knowing that we are powerful and beautiful because of who we are, not despite it. And so that’s the legacy that she wanted to leave and it’s absolutely the one that she did, for sure.

Milbern: I would want people with disabilities 20 years from now to not think that they’re broken. You know, not think that there’s anything spiritually or physically or emotionally wrong with them, you know, and not just people with disabilities, but queer people and gender nonconforming folks and people of color and all of the people I think that society really pushes down and out. And just to note, we’re still powerful.

Katayama: Thank you so much.

LaVant: Thank you. Thank you so much.

Katayama: This past weekend, the Disability Justice Culture Club held an event in Oakland to remember Stacey. There was a caravan around Lake Merritt.

TAPE: Thank y’all so much, everybody that came out to support Stacey. So much love for Stacey, the whole CFF fam. Everybody taking care of everybody. Disability justice now. Disability justice tomorrow. Disability justice always.

Katayama: Andraéa and other friends also held a life Zoom call where many people shared stories and listened to some of Stacey’s favorite songs, like this one.

Thanks to Alice Wong from the Disability Visibility podcast to Sin’s Invalid and to the Barnard Center for Research on Women for letting us use some of the tape of Stacey that you heard in this episode. We’ll leave you a link to those in our show.

The Bay is produced by Ericka Cruz Guevarra and our editor Alan Monticello. We also get help each week from Kyana Moghadam. The KQED leadership crew is Jessica Placzek, Erika Aguilar, Vinnee Tong, Ethan Toven-Lindsey and Holly Kernan. I’m Devin Katayama. That’s it for us. We’ll talk to you next week.