October 17, 2019

While making her way around the city on a recent afternoon, Arizona State University Professor Patricia Friedrich noticed something about the crosswalks.

“It was incredibly hard getting to the other side in time because of the way they were timed, which is for a particular kind of speed of mobility,” she said. “I’m 5-3 so it was a struggle, and it immediately made me think, 'What about anybody else who has differences in mobility? Anybody who’s a wheelchair user, or a child?'

“If you think about the concepts of equity and equality, everybody gets an equal amount of time, but it's not an equitable amount of time.”

Friedrich, who serves as associate dean of academic programs and faculty affairs at the New College of Interdisciplinary Arts and Sciences, is one of a trio of faculty who helped launch the new Disabilities Studies degree program this semester. Associate Professor Theresa Devine and Professor Majia Nadesan also played crucial roles.

“Now, as disability studies scholars and students, we hope to raise awareness and intervene when features of the environment — cultural, social, physical — don’t contribute to an equitable living space and living conditions for people with different abilities,” Friedrich said.

The Disabilities Studies program is one of only a few full degree programs like it, and it is open to students of all majors.

“Not only do we want to attract students who want to study disability studies exclusively, but also folks who might be interested in a concurrent degree with their particular areas of expertise — whether that’s architecture, civil engineering or teaching — because we need to forge a society where we have professionals in all different areas of expertise that have this awareness and bring it to their practice.”

Both Friedrich and Nadesan view disabilities studies through the lens of social critical theory, which means they take into account things like language and other social constructs that affect people’s perceptions of disability. Their intention is for the new degree program to do that same, by taking a humanistic approach to helping students understand the concepts of ability and disability as social constructs.

In the below Q&A, the pair share their expertise and thoughts on the subject with ASU Now.

Editor’s note: Responses have been edited for length and clarity.

Question: According to the U.S. Census Bureau, the number of people living with disabilities is expected to increase by about 21% from 2007 to 2030. Why are we seeing such a dramatic increase?

Nadesan: I think there's a lot of debate about whether incidents of conditions that make people eligible for a diagnosis of a disability are increasing or not. I am of the side of the fence that believes that there are increased incidents. For example, incidents of neurological disorders are growing in both children and adults, and that could be a function of the built environment. I see a neurologist, and she is convinced that we're poisoning ourselves (via toxic elements in the built environment) because she has seen so many more neurological problems over the course of her career. But you could make an argument that people are simply more likely to get a diagnosis because there's less stigmatization and because, through the Americans with Disabilities Act, there's legislation that would support accommodations. So there’s not 100% consensus.

Friedrich: The other potential piece is the fact that as the population ages, the likelihood that an age-related disability could develop is greater, and America has a large population of aging adults. So it's very multifaceted. And it also depends on what criteria you're using to define disability.

Q: What qualifies as a disability?

Nadesan: To be officially designated as “disabled,” it’s a whole government process that requires documentation and everything. But it depends on a lot of things.

Friedrich: When we talk about disability, we're talking about visible and invisible disabilities, but also the fact that disability can be a transient process. If you think of that aspect of it, then it'll include even more people. So it’s not just one thing, it's an intersection of many things, including gender, race, ethnicity and income, and what it means to live in the world at the intersection of all of those things. It's not an isolated cultural construct.

Q: What’s an example of an invisible disability?

Friedrich: Chronic fatigue syndromeChronic fatigue syndrome is also known as “ME,” which stands for myalgic encephalomyelitis. is an example of an invisible disability. But something that caught my attention recently in a medical school text was the language it used when talking about conversion disorder. (Conversion disorder is a mental condition in which a person has blindness, paralysis or other neurologic symptoms that cannot be explained by medical evaluation.) The text said something about the need to separate symptoms of conversion disorder from “genuine” seizures. And I thought, what kind of message are you sending to a person who is experiencing these physiological phenomena if you're saying that there is a legitimate condition and the other is imagined? So when we talk about changing the environment around disability, we need to remember to change the language that we use to refer to people’s experiences so that it is respectful of those experiences.

Nadesan: In academic theorizing, we talk about -etic and -emic perspectives; -etic is an observer perspective and -emic is the observed perspective. –Emic is much more phenomenological, it's experiential. So disability studies is a counterpart to the -etic medical perspective in that it is much more grounded in experiences of people who have disabilities and the environments that produce particular kinds of experiences of ability and disability and the complex relations therein. When I get students who have dyslexia or another disorder like it, I always say, "If you had been born 300 years ago, you wouldn't have a disability." Because the social construction of the environment that produced the possibility for that particular experience didn’t exist then. So that's what we want our students to understand; we want them to understand these components of experience and environment.

Q: What language should we use to refer to disabilities?

Friedrich: Linguistically speaking, there are three predominant ways of referring to people who experience disabilities. One is the person first: “Person with a disability” or “person living with a disability.” Another is disability first. It’s used less in certain communities than others, but I have seen self-advocates who prefer the language of disability first. (For example, disability-first language would be “an autistic person” instead of “a person with autism.”) And then there is indirect language, which does not refer to the disability directly but it's implied. And it all depends on what is most appropriate in each context, matters of self-advocacy and what people who experience disabilities themselves prefer. That’s an important point because the language we use can show the power of people living with disabilities to advocate for themselves.

Nadesan: It can become extremely complicated, this issue of labeling. Because, for example, in the autism community, there are a lot of people who argue that autism isn't a disability. That it's just another diversity. But that gets tricky because then how do you make a demand or request for accommodation? So it's very tricky ground.

Friedrich: Yeah. You have to ask things like, What request is being made by whom? In what context? For what purpose? It’s all of those reporter questions, if you will. All of the wh- questions. And that's what gives context. Rather than a universalized idea of what works. But always with this view of participation, of self-advocacy and inclusion.

Q: Why is this often a fraught topic?

Nadesan: I think the thought that you might become disabled or that somebody in your family might is so terrifying that there's a kind of psychological othering that goes on. And yet, the more experience you have, you realize that there is not a clear line between ability and disability; that line in itself is a social construction. And this “othering” thing is really a function of your own anxieties about it. People might be willing to be inclusive, but at the same time they don't really understand the fragmented nature of ability and disability. So they can be kind of intolerant. I'm hoping that as disability advocacy grows and as we grow the degree program that people will have more nuanced ideas about ability and disability. That they can see it as multifaceted and multi-spectrum and recognize that ability and disability can coincide.

Top photo courtesy of Pixabay