disability pride month: on celebrating disability as diversity, and centering the needs of disabled folks
It’s July! On the heels of Queer Pride Month, I’m excited to be marking Disability Pride Month this year.
There are so many reasons to celebrate Disability Pride Month any year, but this year, it feels even more important. In this moment, knowing that at least 17 million folks will be losing Medicaid coverage after recent legislation passed, it’s all too clear that the lives of pregnant people, low income folks, and disabled folks aren’t valued. We’ve heard too many (and one=too many) horrific things from the current administration devaluing the lives of disabled folks, and that’s not ok.
Birth justice requires supporting all birthing people, including folks with all kinds of disabilities. Everyone deserves accessible, supportive health care — and too often, reproductive and birth care does not meet the needs of people with disabilities.
As a small midwifery practice, I don’t always have the resources I’d like for making my services more accessible. But I have been learning over the years that there are some aspects of the home birth approach that make this model of care more accessible to neurodivergent folks in particular, and it feels like a microcosm of how we can make more people-centered care meaningful across the ability spectrum.
I’d love to share here a few things I’ve learned about accessibility in midwifery. As much as I also understand neurdivergence as a spectrum, and know that I live somewhere along that spectrum, I also wish to submit these items with the utmost humility, as someone who also lives with a tremendous amount of privilege.
guiding principle: trauma-informed approach
As a fundamental principle of trauma-informed care, I start with the understanding that every client I interact with has experienced some amount of trauma in the world. Trauma can be physical, sexual, emotional, spiritual, or medical. It can be related to war, occupation, incarceration, intergenerational dysfunction, weather disasters, borders and migration, poverty, racism, ablism, transphobia, queerphobia, or xenophobia. It’s pretty safe to say that in this current moment, we are all collectively witnessing and experiencing high levels of trauma, especially those of us in communities targeted by the current administration’s policies.
For those of us that have experienced trauma, or those of us that move through a world that makes our lives a bit more precarious, having a safe space to be ourselves, especially in a vulnerable setting like receiving health care, is not always easy.
So the first step in trauma-informed care is to do our best to remove barriers that might make the most vulnerable folks feel unsafe or unsupported. I want to speak a little to how I aim to do this in my practice — again, with the acknowledgement that I know there is always more I can do.
TIME
The biggest opportunity for making a safer space for clients accessing my care is the spaciousness of time. Potential client consultations are booked for a full hour. Initial client intake appointments are a spacious hour and a half. From there, routine prenatal, postpartum, and established client visits are booked for an hour. Only a couple of appointment types (hearing screenings for babies not born in my care; consultations for other midwife clients that need CNM support; and short follow-ups) are 30 minutes.
Contrast this to the standard of care in most clinics and even private practices, where initial consultations with the provider are often not available, or are not offered one-on-one; where routine visits with the provider are maybe 10-15 minutes. The average prenatal visit with an OB in the United States is 11 minutes!
What do we do with all this time? It allows something transformational to occur — a trust-based relationship can unfold between client and clinician. We can focus on what is important to YOU! Time for education and support.
And not being rushed is, I believe, a core aspect of accessibility.
sensory-friendly space
If you’re sensitive or prone to over-stimulation (like me!), thinking about giving birth in a standard hospital room with what I can only describe as oppressive overhead (typically fluorescent) lighting, does not induce a sense of safety. Lots of folks come to community birth out of a desire for a less medical-feeling, and more sensory-sensitive setting for one of the most intense moments of their lives.
I am very intentional about my office space being a place that feels cozy and safe, including with “horizontal” (as opposed to overhead) lighting and natural light. And when I do that 36 week home visit for my home birth clients, I make sure to check in about lighting options if I only notice overhead lighting.
(Note — I have had clients that feel safer with overhead lighting, and for whom low lighting didn’t feel as safe. We can work with that!)
Not only is the space cozy, but for some folks, having only one person to interact with across the spectrum of care — from scheduling to billing to care provision — can make things feel more predictable as well. Like many home birth midwives, I’m the one-stop shop in my practice (though I do work with a professional biller for folks that want to use their insurance), and that can make it simpler to navigate than a large office with several support staff.
transparency
The division between clinician and “patient” is reinforced across our medical system, with providers in “white coats” and “patients” often stripped of their identities and autonomy with patient gowns and being referred to by their medical condition or room number. The provider is the “expert,” and “patients” are expected to “be compliant” with the provider’s plans.
This dynamic is a huge part of why many folks choose home birth. Midwifery as a practice has always been rooted in community (though it’s also been adapted to fill a vital role in service provision in the hospital setting) — and getting back to its roots in home birth allows us to get away from that unsatisfying role.
Here are several ways that I support folks to be partners in their care — and ways that I think are especially helpful for neurodivergent folks navigating their birth journey:
I provide an outline of what folks can expect during prenatal visits. The topics to be addressed during routine care across pregnancy. When and which labs are typically drawn; when we might discuss ultrasounds or vaccination options; what subjects we make space for during our visits
I provide access to all my clinical notes from clients’ charts along with a glossary of all the medical abbreviations I use (I love an abbreviation!)
I made a document that covers in detail the purpose of each clinical assessment offered during care (e.g. fetal heart tones, client vital signs, various uses for ultrasounds and labs, newborn screenings), with a link to evidence-based information about the use of each assessment; along with information about which assessments can be declined
All appointment reminders come with extensive information on accessing the building, parking, and what to expect on arrival
digital & physical access
I’ll be the first to admit that social media isn’t my strong suit. But I do strive to make the visuals more accessible with neurodiverse-friendly fonts, and alt text. I will say that physical accessibility to my office spaces has been a formidable challenge with my startup budget. While my offices are not ADA compliant, I am more than willing to make alternative arrangements to see clients with access needs that can’t be met at my office. Finally, I am also committed to providing sign language interpreters if needed.
advocacy
There is no birth or reproductive justice without disabled folks. I support movements and advocacy efforts led by disabled folks, for disabled folks, not those organizations that claim to speak for disabled people (such as Autism Speaks). I am in solidarity with the demands of disabled people, because I know that their (and our, in the broadest sense) demands are the most inclusive and beneficial for a liberatory future. I strive to midwife (in community) a world that stops disabling people by leaving out the needs of any people. I celebrate disability as diversity, because diversity is a fundamental need of all living beings and societies.
Happy Disability Pride Month!
