I returned to my phd program this semester with the intention of keeping my head down and getting the fuck out with a bullshit degree that would allow me to lead more of my own research projects. I think I actually said that out loud to several people, who all tried to stifle their laughter at the idea of me keeping my head down in that bastion of racism, ableism and patriarchy that is academia. And 2 weeks in, a renown scholar came to present his work about geographic differences in rates of disability across the US, and his voice was full of false authority and white supremacy, and he talked like this entire country wasn’t founded on genocide, stolen land and lynchings assisted by unevenly distributed environmental destruction, and I very predictably lost my shit and threw down with him, then left the room to cry in my favorite bathroom stall, which I remember fondly from before my leave of absence. I am not good at keeping my head down and getting the fuck out.
First, this asshat’s research: He (and of course it was a he, a white he, an older, cisgender white he who had never been made to question whether or not he belonged in a university through microagression after microagression after plain old aggression, an older, straight, cisgender, entitled white he who truly believed he was uniquely qualified to interpret other people’s realities without ever even talking to them, or even acknowledging their humanity), he had run some numbers. The numbers came from the federal government’s social security and disability insurance (SSDI) program, which provides violently small monthly payments to people who qualify as having a serious disability that prevents them from working. Qualifying for SSDI can take years and years, and requires significant resources for visits to doctors and, often, lawyers, and goes away if the person creates the opportunity for themselves to work. But, in a move that can only be described as gaslighting, the government has been paying large sums of money to researchers to study why people with disabilities do and do not access SSDI. Like, really huge sums of money, probably enough to give disabled people enough money to actually rise out of the abject poverty that is violently low SSDI payments and ableist rules about working, but I digress….
Anyway, this asshat got some (and by some I mean a fuckton) of that money to study geographic variation in how many people are disabled (known technically as the prevalence-fancy word for overall rate-of disability), and, of people with disabilities in each region, what percentage access SSDI benefits. He got his information about how many disabled people there were in each region from a national survey that calls randomly selected people across the country on their landlines (we all have landlines, right?) and asks them questions under the assumption that these people magically represent the entire population. This survey determines how many people are disabled not by asking people if they are disabled, cuz that requires too much faith in people to represent themselves, but by asking everyone a series of 6 questions about what they are able to do. This is called a functional definition of disability, and it’s bullshit, for several reasons. First of all, people themselves are much better equipped to describe their identities to researchers than researchers are able to parse an identity as complex as disability by asking 6 questions. Researchers, we gotta learn to ask the right questions, and more importantly we gotta learn to trust people. Secondly, this is an inherently capitalist definition, in which a complex and often marginalized identity is reduced to a simple checklist of what someone can and cannot do, and how productive they are at feeding the imperialist machine. Finally, and most relevant to the rest of what I have to say, these questions assume a baseline of equity that hasn’t existed in the US since white people showed up and built this imperialist machine on everyone else’s backs.
For example, the question designed to get at psychiatric, cognitive and intellectual disabilities reads like this: “have you had difficulty learning, remembering or concentrating because of a physical, mental, or emotional condition lasting 6 months or more?” So sure, some disabilities impact concentration, memory and learning. But so does exposure to lead paint and poisoned water. So does sustained, persistent fear that your beautiful child will become a hashtag when he is stopped by law enforcement purportedly because of a burned out taillight bulb, but really because his very existence is a threat to white supremacy and its beneficiaries, or that you will be rounded up in an ICE raid in between dropping your child off at school and the time they are expecting you to pick them up and give them dinner. So does segregated schools teaching nothing but white history from outdated books in school buildings covered in toxic mold. So does the life altering trauma of sexual violence. So does smog, and hunger. So does Betsy DeVos and her commitment to shutting down public education. So does capitalism, and the idea that my worth as a person could ever be tied to how much money I produce for a system built by and for billionaires. So does ableism, and all systems of oppression that attempt to diminish our humanity and the equal value of all of our lives.
So in other words, these questions do not in any way account for the gross inequity, violence and white supremacy that is America, and they do not adequately mark an identity as complex as disability. And so when your local overpaid researcher does a study where he (and it is always a he) does some math to compare the rate of disability against the number of people collecting SSDI and how this varies by region, he will therefore never get the real story, though his voice is full of false authority and dismissals.
In my seminar, the asshat projected some maps of the United States against a screen that also probably cost more than an SSDI recipient sees in a month or three, and noted that the different gradations of blue on the map represented different rates of disability. And unsurprisingly, there were higher concentrations of disabilities in areas of the country with higher poverty rates, and this asshat, in an attempt to flatter us elite phd scholars, though he already knew the answer to his own question, asked us what we thought explained the higher rates of disability in these areas, colored dark blue on the map. After calling on all the men in the room, Dr. Asshat nodded his head at me, and I said two words: environmental racism. If it wasn’t previously possible to interrupt someone speaking two words, Dr. Asshat did something innovative and interrupted me. “Well, you mean that there are environmental differences that lead to different health behaviors, like smoking etc” he said. “No,” I said, “I mean environmental racism.”
Briefly, environmental racism is the idea that where we locate our most polluting and dangerous environmental conditions is in no way an accident, or random. Instead, a system of white supremacy that values children of color much less than their white counterparts deems environmental hazards like medical waste incinerators too risky to put in affluent white neighborhoods, and instead locate them where brown, Black and Indigenous children learn and play. These decisions, made by people in unearned positions of power who benefit from systems of oppression and felt by the bodies of people who have been resisting white supremacy since it was invented, these decisions are not random. They are clear statements, with grave impacts.
However, these decisions about where to locate our lead smelters and our highest concentrations of air pollution are so rarely shown as clearly in the research as they are in real life, where real people breathe real (poisoned) air and drink real (toxic) water and develop (real) health problems as a result. Health problems that might, potentially, interfere with concentration, memory, mobility, senses and overall well-being. Instead, these racist decisions and their resultant impacts on people’s bodies are used to gaslight, blame and justify racism and racist policy. As in, people living in the darkest blue sections of Dr. Asshat’s maps make “bad choices” like smoking, and like dying early. This version of reality, where people most impacted by oppression make bad choices and environmental racism is not discussed, this version of reality dominates in research. All of the maps presented by all of the Dr. Asshats show disease rates, “choices”, demographics and mortality; none of them show medical waste incinerators, led paint and differentially poisoned lands.
And then research is used for “evidence-based” public health and social programs, which focus on “education” and “teaching those people to make better choices”, rather than distributing environmental hazards equitably, rather than putting the health burdens of these decisions on the same people whose backs America was built on and then blaming their choices for their ill health. Because no one would choose to build a highway through the middle of their community and breathe the heavy metal-laden air, and Flint, Michigan did not choose to have their water re-routed through deteriorated pipes, and the Standing Rock Sioux are currently fighting tooth and nail against the government’s choice to break treaties and route an oil pipeline through their water supply. A pipeline that was originally slated to run through the lily white city of Bismark, but was deemed too dangerous-for a white community-though fine for an Indigenous one. As Katsi Cook‘s community-led research meticulously demonstrated, no residents of her Akwesasne Mohawk reservation in upstate New York wanted General Motors to dump so much of a toxic chemical, PCB, on their land that the concentration of PCBs in mothers’ breast milk was off the charts, gross environmental injustice that the community proudly fights*. No one chooses lead smelters, medical waste incinerators and garbage dumps to be located in their communities against their will. However, research is all too often what creates the public record, and is all too often used as the basis for further decisions. But without such environmental racism “entered into evidence” in the research, all we have to base policy on is misinformation at best, and an incomplete story that perpetuates white supremacy and other systems of oppression.
So where is the impact of environmental racism in research? Why aren’t we talking about it? And without discussion of the environmental racism at the root of so much, doesn’t this mean that research is just perpetuating the blaming, gaslight and truth-obscuring that white supremacy depends on? In a long debate with Dr. Asshat, I pointed out the many instances of environmental racism present in the darkest blue areas of his map: the often unregulated working conditions and run-off from the poultry industry in middle America, and its disproportionate impact on the immigrants whose labor is exploited in poultry factories and their children; the inequitably located EPA-superfund sites (the areas deemed most polluted by the Environmental Protection Agency, almost exclusively located in communities of color); the differential impacts of fracking and water pollution. And each time I spoke, Dr. Asshat rephrased. I asked for a neighborhood by neighborhood breakdown of his map, a close up showing local impacts and inequities like the groundwater-contaminating piles of road salt store in Chelsea, Massachusetts, a Latinx and Middle Eastern immigrant community just across the river from Beacon Hill, one of Boston’s fanciest neighborhoods. You can bet good money that no one is storing salt or any other chemicals in Beacon Hill, and residents are protected from environmental toxins in a way that their neighbors in Lowell, New Bedford and other communities of color can only dream about. Predictably, Dr. Asshat changed the subject each and every time, stating that he wanted to talk about his research findings.
But without considering questions of environmental racism, how worthwhile are our research findings? How much can we learn from research that ignores the literal uneven soil of our society? Not much, Dr. Asshat, not much.
So here’s to being more like Katsi Cook and her Akwesasne Mothers Milk Project*, a research institute and community activist center that advances some of the only good research I’ve seen in a while, in that their research considers environmental racism, and uses research as a tool to resist environmental injustice. Here’s to research that actually matters, that focuses on the forest, not the tiny little misguided twigs preferred by privileged researchers like Dr. Asshat.
Here’s to research that indicts white supremacy and capitalism. Here’s to research that takes us forward, with a focus on the forest and the land we all share. Here’s to equity.
* Check out everything Katsi Cook and the Akwesasne Mothers Milk Project. Please.
Exciting News: Rebel Girl Research is proud to welcome writer and activist Hala O’Keeffe, who will be writing a series about neurodiversity, science and ableism. I’m so fucking excited for this, y’all. Stay tuned!