Disability Pride through the words of Stacey Park Milbern

Image from @snakes.n.roses. Digital artwork of Stacey smiling in front of a large seashell with rays of sunshine illuminating the sky. She is wearing glasses, sparkly hair jewelry, hoop earrings, and her trach is depicted as a necklace with a small moon dangling from it. Purple and orange sea horses, coral, plants, bubbles, and ocean waves are around her. Her shirt is pink and reads, “it is our light that lights the world.”

July is Disability Pride Month, and this week marked the 30th anniversary of the Americans with Disabilities Act.

Throughout this month, I have found myself continuing to grieve the loss of Stacey Park Milbern whose tireless advocacy and love of community was fully lived and embodied in her experience as a queer, disabled, woman of color.

Even though I didn’t know her very long, I am reflecting on the ways that she has influenced me, both as a person and as a pastor. Having her as part of the Bethel Community family, even for a short period of time, has pushed me to examine how to make our church more accessible for all people. And in this moment of a global pandemic and a new racial uprising, I am also learning more about the ways that conversations about race, equity, and justice must always include the realities that exist at the intersections of race and disability.

So I am reflecting on stats, such as approximately 1 in 4 Black Americans have a disability, or that at least 1/3 of incarcerated persons in federal prisons have disabilities, and more than a third of individuals who are killed by police have a disability . In this time of a pandemic, I am reflecting on the ways that not only are Black, Indigenous, and Latinx communities more vulnerable to sickness and death due to Covid-19, but also that BIPOC communities with disabilities are even more susceptible to discriminatory treatment, due to their impairments.

I have often found myself wondering what Stacey would be saying and doing in these times, missing her presence and her voice. So this past week, I spent a bit of time sitting at the feet of Stacey, reading and viewing some of the pieces in the #WhatStaceyTaughtUs syllabus.

Here are just a few quotes from Stacey that have spoken to me in the last week:

Stacey Milbern Park and Patty Berne-“My Body doesn’t Oppress Me, Society does”

From “My Body Doesn’t Oppress Me, Society does”

• “I really like separating out impairment from disability…So impairment as physical or neurological manifestation. Like what’s real. I have a physical impairment. And disability is what society creates as a barrier because of impairment. When I am in a place where my access needs are being met, then my impairment isn’t so significant.”
• “When we focus on a person’s individual impairment or diagnoses… it kinda like lets society off the hook. It makes all the focus on that individual circumstance when really ableism, exclusion, and violence happen because of systems of oppression.”

From Disability Visibility Project Interview

• “I think people with disabilities are used to the world not being accessible and having to make things work out of nothing. You know, the world literally isn’t made to house us, it feels like sometimes. So we get to be really creative problem solvers and I think aren’t constrained to boxes, can kinda see pictures that other people can’t see.”
• “I would want people with disabilities twenty years from now to not think that they’re broken. You know, not think that there is anything spiritually or physically or emotionally wrong with them, you know. And not just people with disabilities but queer people, gender non conforming folks, and people of color. And all of the people I think that society really pushes down and out. And just to know that we are so powerful.”

Stacey Milbern: Press Conference with the California Care Rationing Coalition, advocating for “Equitable Healthcare for All”

Press Conference with the California Care Rationing Coalition.

• “The disability community has a longstanding distrust of the medical system, yet we have to navigate it every day, especially Black, Indigenous, and people of color whose pain is not taken seriously, is not believed, and historically have experienced resource and healthcare deprivation. It is well documented that Black people in the United States experience more illness, worse health care outcomes, and premature death, compared to white people. Doctors take an oath to treat all patients equally, yet we know this is not the case. This is why there has to be checks and balances on hospitals and nursing homes.”

On the Ancestral Plane: Crip Hand Me Downs and the Legacy of Our Movements

• “I think about crip ancestorship often. It is tied to crip eldership for me, a related but different topic. So many disabled people live short lives, largely because of social determinants of health like lack of healthcare, housing, clean air and water, or having basic needs met. Other times the short lives are merely one truth of our bodyminds, like the neuromuscular conditions Harriet, Laura and I have. I do not know a lot about spirituality or what happens when we die, but my crip queer Korean life makes me believe that our earthly bodyminds is but a fraction, and not considering our ancestors is electing only to see a glimpse of who we are. People sometimes assume ancestorship is reserved for those of biological relation, but a queered or cripped understanding of ancestorship holds that, such as in flesh, our deepest relationships are with people we choose to be connected to and honor day after day.”

Speech for disabled students at the UC Santa Cruz Disability Resource Center graduation ceremony, June 13, 2019.

• “There is no reason for us to feel shame for who we are. We were born into this world exactly as we are. We are who we were meant to be. That doesn’t mean we can’t grow and change and be better. Grow. Change. Be better. But also know you are a beautiful human being who deserves love and tenderness and care as you are. You do. We do. We deserve to have our boundaries listened to. We deserve respect. We deserve dignity. We deserve to have our humanity seen. We deserve an opportunity to contribute to society. We deserve the ability to make mistakes…..
  We are not the only ones who deserve all of these things. Every living being on this planet does. Your experiences of ableism and with disability can give you a greater ability to understand the pain of the world if you let it. As so many people have demonstrated, when you are a free person, you have an obligation to help other people get free. It’s our responsibility to make this world more just and loving, to fight for people to have all the things they deserve as people have fought for us. We get much further in all our endeavors when we lift up our people as we work. This is very different than the message mainstream society tells us to focus on our own immediate needs. This is very different from the message we hear that disabled people have nothing to offer.”

Rest in power, Stacey.
We continue to remember you.

I hope we continue to honor you and your legacy- in the lives we live, the communities we build, and the justice that we seek.