These Disability Doulas Are Helping People Navigate Life More Comfortably

Asweenter this terrifying Trump 2.0 era, community care is more important than ever for disabled people. We all know how Trump feels about people with disabilities, and the Heritage Foundation’s Project 2025 plan, which conveniently overlaps with Trump’s agenda, proposes drastic cuts to Medicaid that could be devastating. 

When I ask Sami Schalk, associate professor of gender and women’s studies at the University of Wisconsin-Madison and author of “Black Disability Politics,” how disabled people should prepare for the next Trump term, she says, “The state is going to abandon disabled people more than ever. Informal networks of care and support are the only way we survive.”

Some context: I am a recently disabled person. When I first started having neurological issues nine months ago that impacted every facet of my life, I had no idea how to deal with it. I didn’t know how to apply for disability benefits. I didn’t know how to deal with the fact that, for many months, I couldn’t physically write. I didn’t know how to navigate the seemingly endless doctor appointments. I didn’t know how to manage my pain, which was constant and unremitting. 

To top it all off, I didn’t know who to talk to about it all. My friends were supportive and amazing, and my queer family stepped up immediately to help me raise money to pay my bills, but no one could help me figure out how to imagine a disabled future for myself. I had persistent daydreams that someone would appear to help me figure it all out, but I didn’t really think that such people existed. I read every book on disability and disability justice that I could find at the library and every blog and article on the internet written by a disabled person that might be able to show me a way, any way, forward. 

Long story short: I wanted someone to teach me how to be disabled. 

What is often difficult for able-bodied people to understand is that adjusting to life as a newly disabled person isn’t just a matter of finding the right care or the right technology or the perfect life hack. Although those are crucial necessities, becoming disabled is a total identity shift. That intersection between the practical and the existential, I learned, is where disability doulas come in.

“Disability doulas are these tendrils reaching toward community to be like, ‘We got you, come to us,’” says Schalk, who has served as a crip doula (another term for disability doula that uses a former slur that has been reclaimed) to many folks in her community. “You still need doctors. You still need therapists. You still need friends. And many of them will be able-bodied, but there are people that will allow you to be seen and supported and not feel like a problem everywhere you go.” 

Eris Eady, an executive coach and chaplain in Ohio who is partnered with Schalk and was also informally doula-ed by her, explains that before her experience with Schalk, she would run herself into burnout on the regular. “I thought I just had to stuff down my needs,” Eady says.

Her perspective on how to do life as a disabled person shifted entirely when she went on a trip with Schalk and another disabled friend.

“Most times when people travel internationally, they hit the ground running and then there’s just activity after activity,” Eady says. But Schalk did things differently. There was conversation and care around meals and dietary restrictions. The trio talked about the most easeful ways to get around, which meant using wheelchairs at the airport and car services to get from point A to point B. They worked together to make an itinerary that allowed for rest. They found accommodations with separate bathrooms. In short, they made sure that they were planning a trip where no one’s needs would go unmet. 

But it wasn’t just the logistical components that made the traveling experience more pleasurable for Eady. “At the airport, I looked up, and I was just like, ‘Whoa, everybody that I’m traveling with needs a wheelchair, like me,’” Eady says. “That’s pretty cool; that’s pretty radical. That really makes me feel less awkward, less alone.”

This is similar for many other individuals who find their way into disability justice circles. But even these increasingly visible spaces are still not accessible or available to everyone who would benefit from them. Stefanie Lyn Kaufman-Mthimkhulu, a community care worker and disability doula in Rhode Island, shares that disability doulas fill a crucial gap in care for people entering into disability who may not have disabled friends or access to resources.

“There’s a lot that happens informally and naturally if we have the capacity to be connected and plugged in, which isn’t always the case,” Kaufman-Mthimkhulu says. “There is a magic to embodied knowledge that only people who move through the world in certain ways can actually understand.” 

Disability doulas share that magic.

“The term ‘disability doula’ comes from Stacey Park Milbern, who is an Asian, queer, disabled woman who has since passed and become an ancestor,” Schalk explains. “It started with her writing a Facebook post about this fantasy, this dream, this thing that we want, but also this thing many of us were doing informally.”

In other words, although disabled people have always helped each other navigate the transition into disability, there wasn’t a name for that role until Park Milbern coined it on social media. And because of the systemic lack of recognition and support for such work, most crip doulas still do this labor informally. Schalk herself hasn’t kept track of the number of people she has played this role for, and she has never been paid for her work. The most marginalized people are often doing care work in these unpaid, invisible ways.

Unpaid labor is a complicated topic, particularly when we are talking about queer Black femmes performing it. “I do think people should be recognized and compensated for labor,” Schalk says. “But what that compensation looks like in racialized, queer, disabled community has not been money, because that’s not what most of us have. It comes through other kinds of care and support, and an expectation that you’re going to pass this on.” 

Kaufman-Mthimkhulu says they have sometimes been paid in money for their work as a crip doula, but usually not: “I have had folks that I have worked with for several years who have never paid me and who’ve never been able to pay me,” they say.

But now that Kaufman-Mthimkhulu has two kids, they say they’ve had to think hard about how to work as a crip doula in a way that’s sustainable for them and their family. “I do work with people who don’t pay me anything, or we barter, or who will send me plant medicine or what they can when they can, and then I have had folks who have compensated me in a more consistent way.”

So while it is possible to ask someone to be your crip doula, you may not have to officially “hire” them. Compensation has to be worked out between individuals, as does the role of the disability doula.

Kaufman-Mthimkhulu sometimes works with people in contained ways for a limited period of time, for example, to help them file for disability benefits. And sometimes their role is more intimate. They go with people to doctor’s appointments and help them launch crowdfunding campaigns. “I do a combination of tangible, practical, logistical support and what I refer to as sense-making,” they say.

This sense-making — coming to terms with a whole new life — and dealing with massive identity shifts are aspects of becoming disabled that Kaufman-Mthimkhulu says they find are often left out of the medical equation. 

Schalk agrees. “When folks are dealing with physical medical stuff, the doctor does not want to hear about how hard it is for you to make friends now, or how hard it is for you to be in the same community [of people who you knew before you were disabled]. He has no solution for that, right? She has no solution for that,” Schalk says, having seen the same thing in her experience. 

And while a therapist may seem like the most obvious source of help for processing feelings about friendship and community, crip doulas take this support further — they can connect you with people who have had similar experiences and have the potential to grow into friends or community, an invaluable resource. 

“It’s changed the type of relationships that I choose to be in,” Eady says. “The bar is impeccably high.” 

At a time when the rights of disabled people are threatened, it feels crucial for us to be in relationship and solidarity with others who understand our lived reality first-hand, who are personally invested in it.

“Doulas are providing this more holistic care for folks, helping them work through the ineffable, social, emotional stuff that needs to be worked through,” Schalk says. “But there is also something about being seen, recognized in a way where you can say, ‘Oh, my God, it’s not just me.’ That is the biggest relief.”