Family, Crip Doulas, and Coming Out
“[T]he work of supporting people rebirthing themselves as disabled or more disabled has a name. We are doulas. Crip mentorship/coaching/modeling at its best is disability doulaship. The fact that society doesn’t even have language to describe this transition speaks to the ableism and isolation people with disabilities face” — Stacey Milbern
This quote is from episode 6 of the Disability Visibility Podcast, in a discussion between host Alice Wong and guests Stacey Milbern and Leah Lakshmi Piepzna Samarasinha. You can read the full transcript here. The term crip doula is attributed to Stacey Milbern.
crip dou•la [noun]
A person who provides support to a person rebirthing themselves as disabled or more disabled.
As someone with a genetic illness you may not be surprised to learn that my first crip doula was in my family. You may be surprised, however, to learn that they didn’t have Ehlers Danlos Syndrome or Dysautonomia. My closest cousin, H, had multiple sclerosis (MS) and congenital heart disease.
Growing up, our family spent a lot of time with H’s family. We lived nearby, and celebrated most holidays together. As a little kid, I remember H describing MS to me and explaining that she could no longer walk in a straight line. She didn’t speak about her health too often, but when she did she was matter of fact. I never felt like her illness was something to hide. But I didn’t feel like I could ask her anything. In part, our family didn’t communicate openly about “private” matters. But, now, I see how I made assumptions about the things I could talk about with H.
As we aged, her illness progressed. She began using a wheelchair and more assistive devices. My older sister eventually learned H’s bathroom and wrap routine to be of assistance. I remember my sister describing how that experience was one of several significant moments that guided her to her core belief that everyone deserves dignity and support. We would visit often, and at times she’d be doing standing exercises with assistive devices. In other moments, we witnessed her having to call for her mother because she needed to use the bathroom. Sometimes we would see her sit-to-stand chair helping my aunt transfer H to her wheelchair. Eventually she lost the use of both hands, and we saw her cycle through different assistive tools as her abilities changed. We all learned parts of H’s experience by seeing it first hand.
I have two sisters, who are my fiercest allies and supporters. They once explained that they believe having EDS could have happened to any one of us, so they will walk this journey alongside me. They made that decision because of who they are. But we have talked about how our relationships with H gave us a perspective on disability that informs our interactions and has been incredibly valuable as I have needed more support. They have more respect and a much deeper understanding of my experience because disability isn’t new to us.
This side of my family is mostly made up of white, Christian, moderately conservative people. There was a lot of care and support, but even more stoicism. My grandmother’s brother, who was born with cognitive disabilities, spent most of his life in an institution. Many of us never met him. When my father was diagnosed with cancer, my parents were advised to wait until after the holidays to tell everyone, so as not to ruin Christmas. The family operated in a specific way and I quickly learned to conform.
There was no overt homophobia, racism, or ableism. That being said, my grandmother was born in 1916 and there were no openly LGBTQ+ family members. I planned to never come out to her, as queer or disabled. I assumed I would come out to the rest of my extended family if I ever got married. Unwritten rules dictated that you were only allowed to bring a partner you were planning to marry to a family event. H was just shy of 20 years older than me. By the time I was even thinking about dating, she was in her late 30s and I had never seen her date. So we just never talked about it.
One day in my mid-twenties, after visiting with family, my cousin pulled me aside before I left. At this point, I was dating someone who happened to have the same name as my grandmother. H said she had seen on Facebook that I had my own [insert my grandmother/ then partner’s name]. I paused, unsure if I had heard her right. As she smiled up at me, I knew exactly what she was asking, and why she had pulled me aside and my Aunt had followed. As they both beamed at me, I said, “yes, she’s my partner.” They both said how happy they were to see me happy. My cousin gently forced me out of the closet in the best way possible, in a way that only she could.
As I started to experience more symptoms of my own illness, I would reach out to H with questions, frustrations, and funny stories. We began to connect more over our shared experiences with chronic illness, disability, and the medical community. H was a private person, but as I became disabled our interactions changed. She spoke more freely about her experience while still being guarded. It brought us closer together, and I felt honored as she opened up and shared more with me.
She told me about books that had changed her perspective, and tools she couldn’t live without. But more than anything she listened. When it was difficult to share with other people, as they would become so sad that I would end up managing their emotions, she listened. When other people didn’t understand why I couldn’t just take more medications (this is something a friend seriously asked my sister once), she understood. When I would weigh the challenging decisions required of chronic illness patients, she listened with compassion, understanding, and love. She became my disabled place. She became the first place where I could be disabled; the first place where I felt safe to be disabled.
It’s hard to explain what that feels like. When chronic illness tips into disability, there is no one there to guide you. There are so many doctors and systems to apply to and begin to understand. At the same time, you may feel sicker than you ever have before. You’re seeking out and trying new medications and therapies. You’re watching your life and plans change before your eyes. It can feel like no one understands. I was lucky to already have someone in my life who not only understood, but was invested in me. She built me up. She made me feel like I was doing it right. She made me feel like it would be okay.
The last time I saw my grandmother, aunt, and cousin in-person was at my grandmother’s 99th birthday party. A lot of my extended family flew home from all over the country to celebrate, including myself and my former partner. I felt comfortable to bring my partner to the event because of that conversation with H. I got to come out to my family without having to say a word, all thanks to H. I will forever be grateful for all the days she sat with me as I talked through my changing abilities, all the ways she shared her experiences with me, and for just being a really great cousin.
We lost her a few years ago, just shy of her 50th birthday, but I think of her most days. She’s had an outsized impact on my life in ways I couldn’t imagine. I am forever grateful that I had the opportunity to know her. She had a saying she lived by: “one good thing, everyday.” I hope you are able to find one good thing today.
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