by Sandy Ho
Content warnings: statements about medical trauma (no graphic descriptions) and mention of eating and exercise
I recently observed that there were a few additional questions asked of me during a routine virtual visit with my health plan’s care coordinator. “These are some questions that I need to ask certain types of people.” Ok, sure I replied – not thinking much of it.
“Have you ever gone to jail in the past two years?” No.
“Are you currently facing any legal troubles or challenges in your life?” No.
“Do you feel safe in your current living environment and neighborhood?” This question gave me pause. I wasn’t sure what the question was asking, safe in the context of COVID-19? Safe from racism? From ableism? From potentially falling while doing modified gymnastics to do my laundry because it’s slightly inaccessible? I ultimately responded: Yes I feel safe, I think?
“I mean to ask, are you currently experiencing any kinds of abuse, like verbal or physical or emotional abuse in your current living environment” the care coordinator clarified. No, I am not experiencing any forms of abuse in my living environment, I confirmed.
Here’s the truth that likely wasn’t captured in that routine check-in form that gets completed every six months by a care coordinator: I cannot confidently say that I always feel safe while navigating the public health system and trying to obtain access to my care or services. Of course this has never been a question asked of me on any of the myriad surveys and forms that I have answered.
The disability policy researcher in me understands deeply that the information the care coordinator was documenting is important. I am acutely aware that there is a direct connection between this data and broader policies that are developed to regulate the quality of public health services, and informs the ways services are delivered. This data that is routinely and consistently collected from me every six months also serves a broader purpose including identifying potential gaps in services, and providing descriptive demographic information about the members of this health plan. As the care coordinator was reading the list of questions to me in my mind I was taking note of the ways questions were asked, how I might improve some of the survey questions, and questions that I thought were completely absent. For instance, my race and ethnicity is a part of this data, although notably my sexual orientation is not. My employment status is documented, but no questions were asked about whether I was considered an essential worker in my state. Questions about my exercising routine were posed, but there were no questions about how regularly I set aside time to eat. In my experience, I have come to find that public health is more influenced by the questions that are unasked than by the questions that are already present on the questionnaire.
As a disabled queer Asian American cis woman I find myself responding to these types of questions with reservation and uncertainty about how my information will be used. In part my hesitation is a reaction to the childhood experiences of being gawked at, poke, and prodded by an array of medical professionals who presumed medical authority and autonomy over my body. The trauma from those experiences is in the ways it was ingrained in me that I was and continue to be a public health nuance, outlier, and an “other.” This is just one way in which racism and ableism work in concert with one another in public health. More broadly, our country has witnessed the ways ableism and racism thrive together within communities of color, for instance the increase of children who acquired disabilities due to water contamination in Flint, Michigan. Racism is a public health concern because it both contributes to public health inequalities and influences the ways people experience, and navigate public health to access their needs. Disabled people and disabled people of color are often perceived as separate populations; however, prevalence of disability among communities of color are higher than among white populations. As our country continues to roll-out a public health strategy around the Covid-19 pandemic, a report from a coalition of disability rights and civil rights organizations examined the ways crisis standards of care contributed to medical discrimination – particularly among populations that have historically faced discrimination in public health. In many ways the systemic racism and ableism that pervades public health systems is a direct devaluing of the lives of disabled people of color. Too often, questions like who gets to live, who gets to have access to quality care, or who is subjected to ableist biases are the questions that drive public health strategies. COVID-19 is just one recent example of the ways it may be too late for public health to save disabled people of color who are also multiply-marginalized, and perhaps it will always be impossible to neatly ‘quantify’ our experiences and access to public health on surveys.
If public health were intentional about addressing racism and ableism, we could begin by ensuring the field reflects the communities it serves. Gathering data is only one part of the public health strategy, we also need public health leaders to interpret data analyses in ways that uphold the lens of health equity. For instance, COVID Black is a resource that presents public health data in ways that reflect the lived experiences of Black communities and individuals within health care systems, and promotes community-driven research. The stories that await to be told from the public health data of disabled people, and disabled people of color have yet to be elevated. This is why it is necessary that disabled people of color are present at all levels of public health systems because I know that the community of disabled people that I come from will not rest until we ask the questions that the current public health field still hesitates to.
About the Author
Sandy Ho (she/her) is a research project manager at the Community Living Policy Center, as well as a community organizer in the Boston area. Her areas of interest include civic engagement of people with disabilities, access to Medicaid HCBS for people of color with disabilities, and building research capacity among disability advocates. She is a student at the Heller School and the founder of the Disability & Intersectionality Summit. Sandy identifies as a queer disabled Asian American woman.
You can follow her on twitter @NotYourAvgHo101