Feature Issue on Engaging Communities Underrepresented in Disability Research

Akeem Anderson envisions a future when researchers’ talents go where they are needed most.

Despite the proliferation of academic courses promoting diversity, equity, and inclusion, you've argued that the frequent marginalization of these efforts compromises progress, suggesting that identity issues should be embedded in every research project we do, from idea formation to methodology to execution. How do you think about doing this from a practical standpoint as a student and future researcher? Does it go beyond just involving people of color with disabilities in research?

It’s not necessarily about having people who identify with particular categories become part of the research and educational paradigm; it’s more about moving beyond the idea that identity is a separate discussion. Instead of creating separate spaces for discovering how race and disability interact with some aspects of life, they should be one and the same. If I’m taking a class in human resources management, I should probably understand the disproportionate realities of violence that have permeated the workforce. Solely being trained in the paperwork of accommodations and accessibility doesn’t teach me where the law came from or why things are structured the way they are. I don’t think they should be entirely separate. Sometimes in the academic setting, if you pose a question or present an alternative view based on the history of slavery or the eugenics movement, a professor might respond positively or may say this is beyond the scope of the class and it is distracting us from what we need to learn. Either way, the primary course content doesn’t change. So many of these questions are left for separate courses; the only people taking them are students with that particular interest.

Can you describe the embeddedness of your own personal and professional lives? How is this distinct from the idea of "intersection?"

My family is from Guyana and Panama, and I have family members and people I live with today who have disabilities. We don’t live in demarcated realms. We don’t say, “This is how I experienced race today.” It reminds me of the term embeddedness that I learned from my sociocultural anthropology course recently. Social and economic functions aren’t discrete categories. They are inherently and intimately related. As researchers, we must think about ways to layer these embedded identities. This idea of rigid boundaries isn’t reflective of our lived realities. As a law student, I had an excellent property law class where, as part of the course, we looked at various ways laws were used to discriminate on a racial and gendered basis. Why is that critical reflexivity not used in every class?

As you think about exploring this in your own career, how can we look at these intersections in a more comprehensive way?

We need to eliminate this idea that there is an objective reality devoid of subjective considerations. A lecturer can make a comment and present it as fact, and students will often look at each other with raised eyebrows. For example, a teacher can comment about when Black people “came over” to the Americas, making it appear as though the migration was a choice, and a group of people instinctively know something is off. We also need to acknowledge that despite people making millions of dollars on diversity training, little structural change comes from people taking mandatory trainings and clicking through boxes. Oftentimes, the post-training survey asks the user about their perspective of their increased cultural competency with little to no surveying on how marginalized communities are benefited or impacted by the training. I was raised in, and currently live in, a household of people with multiple disabilities. I don’t see that as unique, and I don’t think we should divorce that part of ourselves from our professional spaces. I can’t live with people with disabilities and then go into these academic pursuits and forget that. Considering our own realities forces us to be more accountable.

You’ve studied the horrific legacy of abuse of research participants and concluded it is little wonder communities underrepresented in research distrust the scientific community. Are there ways to build trust now?

Yes, but it’s hard. Whether it’s the Ebola virus or AIDS, society sometimes determines that specific populations are deserving of the problems they face. In disability, there is an undercurrent that people with disabilities are unproductive members of society and, thus, don’t deserve tax dollars. In Minnesota, just a couple of years ago, there was an incident of emergency responders using ketamine without consent on a Black person having a diabetic seizure. It’s hard to build institutional trust when there is all this history of trauma and the violence continues to happen. It’s hard to disentangle this legacy.

Against that backdrop, what do you want to explore in this field?

I’m a young researcher and still putting ideas together from my academic experience, but my goal is to create embedded work. I’m not going to multiple graduate schools and programs to be confined to one department. I should be able to teach at a law school, at a medical school, and other “professional” institutions. Today, the predominant reality is that you get a degree in one area, and that’s where you stay, even if you’re doing impactful work in other spaces. I don’t have one concrete solution I’m trying to project on the world. I’m hoping, at least, I can shape a different framework that will allow others to carry on innovative ideas.