What Does a Sick or Disabled Doula Do in an Uprising?

The full text of what was excerpted for a new zine from What Would an HIV Doula Do and the One Archives

In September, 2020, I collected responses to a prompt: “What does a sick and/or disabled doula do?” It was for a zine by the What Would an HIV Doula Do (WWHIVDD) collective, of which I’m a member.

WWHIVDD understands a doula as someone who holds space during times of transition, as “we understand HIV as a series of transitions that begins long before being tested or getting a diagnosis, and continues after treatment. We know that since no one gets HIV alone, no one should have to deal with HIV alone. We doula ourselves, each other, institutions and culture. Foundational to our process is asking questions.”

For our third zine in the COVID-19 era, we worked with ONE Archives Foundation to ask a question. This time the question was:

What Does an Uprising Doula Do?

To tackle the question, editors Abdul-Aliy A Muhammad and Pato Hebert crafted a series of prompts we could answer. The aim was to “spur conversation about uprisings, highlighting our often unspoken and disparate definitions of the word, assumed impacts, and various goals.”

The zine was designed by Virgil B/G Taylor, and is available from the ONE Archives Foundation website.

I wanted to emulate the style of zines of the era of my adolescence and youth, where friends worked at Kinkos, and paste was more prevalent than home computers (or certainly home printers). I found out that it was hard to emulate on a laptop and appreciate the patience of the editors and designer of the zine to stay true to, and improve, upon my attempt.

Seven people submitted writing for the prompt and one submitted photos. I said I would be using excerpts for a piece in the zine but would publish the full pieces here. I will add the photos soon.

In addition, Leah Lakshmi Piepzna-Samarasinha noted that Stacey Milbern Park, a disability justice “powerhouse” and queer femme of color who passed away this May, had birthed the language of disability doulaship.

So as a part of the piece, I submitted a collage with a short excerpt from one of their conversations, from Piepzna-Samarasinha’s book Care Work, pictured below. In the back-and-forth with the project leaders, things got confusing and this page did not make it into the zine (although Stacey Milbern Park is credited in the first page of that section.) And for that, I deeply apologize. Below is the collage:

Image description: A mostly gray-scale photo of a piece of paper with sections of text pasted above round and rectangular sections of photos of leaves and tiles, and the hashtag #StaceyTaughtUs. There are citations to the text, which “Crip Lineages, Crip Futures: a Conversation with Stacy Milbern” by Leah Lakshmi Piepzna-Samarasinha in the book Care Work: Dreaming Disability Justice, and the photos are by Summer Diegel.

Here is the link to the zine itself.

And here are the full text submissions, in order of submission:

Kristy:

Complete this sentence: A sick and/or disabled doula...

They carefully plan the route to the protest site, choosing the path with places to stop and rest. They pay attention to where there is a washroom open (if at all), and bring needed supplies and water and snacks. Often, attending isn't possible and they cheer from home.

Anonymous:

Complete this sentence: A sick and/or disabled doula...

is it happy with the start of this sentence. They would say a doula who lives with XXX is simply a doula, that is a person who holds space and. nurtures. Their lived experience may or may not make then a bearer of trauma, a person who can hold others' trauma with ease. But what is true for is as doulas who live with a disease or a disability is our ability to thrive.

Contribute a paragraph or statement to answer this question: In the context of the question "What does an uprising doula do," what does a sick and/or disabled doula do?

Prioritize their own care first. Living with XXX means that i can easily disregard my own care when caught up in the struggle. And when that happens its a fast track to feeling spent. So, an uprising doula who lives with XXX must be gentle with themselves, balancing the outward energy with the inner one. A yin yan that's very personal and weighted occurs. Can I? Must I? Should I? And if I do partake in this uprising, what is next so I can sustain my commitment and my life?

Fee:

Complete this sentence: A sick and/or disabled doula...

cries.

Contribute a paragraph or statement to answer this question: In the context of the question "What does an uprising doula do," what does a sick and/or disabled doula do?

They know how to bend down to others without hurting their back more than it already does. They know what chairs to use for the circle. They don't say "everything will be alright".

sarah beth st marie

Complete this sentence: A sick and/or disabled doula...

wouldve held my hand for the words that changed my entire world and ripped the air out of my my body as if it were never mine to breathe.

Summer Diegel

Complete this sentence: A sick and/or disabled doula...

A sick and disabled doula looks back at me in the mirror; brace themself against the sink; they cry. They hold their heart and breathe into rhythm and shake off the stickiness and crumple onto the floor. They stay there. They wait. They sink into their whole bodymind and ask all themselves all the right-or-right-enough questions. The next day, a sick and disabled doula stares at me with heavy, circled eyes from the reflection in my apartment window. They walk toward the glass, ebb and flow, as they raise a glass of water to the sunlight. They know that water makes them up and keeps them alive. This sick and disabled doula is sometimes lonely. This sick and disabled doula does their best, they are learning to trust their wisdom.

Contribute a paragraph or statement to answer this question: In the context of the question "What does an uprising doula do," what does a sick and/or disabled doula do?

It depends on the person & depends on the doula!

Mae:

Complete this sentence: A sick and/or disabled doula...

does Mikveh from their home.

Contribute a paragraph or statement to answer this question: In the context of the question "What does an uprising doula do," what does a sick and/or disabled doula do?

A sick or disabled doula brings care with access, their medicine meets their access needs and those who they are healing because we keep each other safe and cared for. A sick and disabled doula knows that the medical industrial complex does not keep them healthiest, but the love of fellow sluts and crips do.

Kap:

Complete this sentence: A sick and/or disabled doula...

Disabled doulas drudge on... ... ... ... ... ...

Contribute a paragraph or statement to answer this question: In the context of the question "What does an uprising doula do," what does a sick and/or disabled doula do?

Disabled doulas must diligently hold space - and be ready for - transition during times of uprising. American culture and its power structures demand that we always hold small reserves of extra energy - or adrenaline or medication or espresso beans - to ensure that our bodies, our selves can always be protected on a moments notice. Although our personal vigilance is sometimes mistaken as selfishness or dismissed as an expression of our anxiety disorders, disabled doulas are here to call code blue on a system that has failed more than just us. In the COVID-19 era, listen to your disabled doulas because we have faced death with a doctor who doesn't care. To nip it in the bud before anyone can think it, no, it isn't just one bad apple, and disabled and sick people cannot just see another doctor or find another Emergency Department. It is a medical system that depersonalizes you, then calls it depersonalization. And, depending on your identity, you may also be deemed a criminal, and for the record, people with disabilities make up 33 to 55 percent of all police brutality cases. How do you like them apples? This doula thinks those apples are too acidic, and cause acid reflux... So, where's my lidocaine? Disabled doulas are also great observers: we are uprising historians; we are uprising archivists; we are uprising photographers; and we are uprising philosophers. Although avoiding ableist pressure to engage in certain types of civil disobedience is challenging, especially for this doula who wants to be on the front lines, there is real value in listening to the world around you, archiving those experiences, and sharing them with others. I realize a lot of people aren't at the hospital every three weeks for chronic illness treatments, and do not have the experience to understand the travesty of the overworked healthcare system - even before COVID-19 - but there are people who do understand those realities, and communities should listen and learn from those stories. And, as this disabled doula once again gets tired of her doctors misgendering her trans partner, just a reminder that all of our stories are inextricably linked. As a frustrating example of intersectionality, my endometriosis medications were no longer covered for awhile due to transphobia because they are the same medications used in hormone replacement therapy. Disabled doulas are willing to share their experiences with others because we always relied on ourselves for accurate information. Disabled doulas are willing to help others because we are self-taught in the art of medical persuasion. Disabled doulas are willing to share resources because we are self-taught lawyers with extensive personal libraries. Disabled doulas are willing to help YOU keep THEM in check.

Sully Carmona:

Complete this sentence: A sick and/or disabled doula...

Gives and takes space to recognize all the shit the non-crips DON’T NEED to think about… We welcome discomfort from those who don’t know what’s up. We dazzle them with our amazing brains, cyborg bodies, perfectly different and powerful assets… We ask each other questions because we want to hear the answers.