Empowering *Everyone* via Disability Studies at CUNY - Dr. Andrew Marcum (POY 57)

People with disabilities have much to offer society. Dr. Andrew Marcum directs Disability Studies at CUNY to help us see their potential.

Episode Notes

This month, I’d like to introduce you to Dr. Andrew Marcum. He’s the Academic Director and the Distinguished Lecturer for Disability Studies at the City University of New York’s School of Professional Studies, or CUNY for short. I feel like I’d do a disservice to him if I tried to summarize everything he’s accomplished in a few short seconds. I will say he’s been teaching at college courses for twenty years, and he has a PhD and a Master’s degree in American Studies. He’s also traveled the country in pursuit of his interests, which include American studies, history, and sexuality in addition to his work in disability studies. I’m a little humbled that he made time to talk with me, if I’m being honest, but I’m honored that he did.

People like Andrew have made significant progress in the last few decades in broadening awareness for those with disabilities. He’ll point out later that it’s not just legal rights they need, although he’ll mention the Americans with Disabilities Act of 1990 a few times in our conversation. People with disabilities need social, cultural, and political engagement, too. What I mean by that is they need to be included in more conversations, whether it involves their needs or everyone’s needs. That’s where concepts like accessible design come in, as more accessible spaces and systems benefit everyone, including people with disabilities. Voices like Andrew’s aren’t enough, though. Those of us without disabilities need to show up, too, and make our voices heard. He and I will talk about what all of us can do later on.

Andrew is someone with an impressive depth of knowledge about all sorts of subjects. He doesn’t have the curse of knowledge like some academics do, where they know way more than they realize. I really enjoyed talking with him. He seems like a passionate but down-to-earth kind of person, and I think that will come through as we talk.

Here’s my conversation with Dr. Andrew Marcum, Academic Director and Distinguished Lecturer for Disability Studies at the CUNY School of Professional Studies.

Interview Transcript

Josh: Like I mentioned before we started recording here, I’m curious how you discovered disability studies as a field. What is it about disability studies that first appealed to you?

Andrew: I came to disability studies through my interest in American history and culture. I decided to pursue graduate degrees in American studies. American studies is the interdisciplinary study of American history and culture, sometimes using social science methods, but also as deeply engaged with the humanities and why are we the way we are. Why is our culture the way it is? How is it that we respond to the needs of our society? How do we come up with notions of what it means to be an American?

Disability is an important part of that story. I was born with cerebral palsy. I had multiple disabilities throughout my life, so I wanted to understand why we respond to disability the way we do. We tend to look at it as a deficit rather than as an aspect of human diversity.

We see it’s generally conceptualized as a medical [or] biomedical issue, that we need to correct it, we need to prevent it, we need to cure it, we need to avoid it. That’s a very frustrating thing for people with disabilities, because instead of seeing us as part of a diverse population and seeing the strengths and the values of difference, those differences tend to be marginalized and stigmatized. That leads to significant deficits for people with disabilities in terms of access to education, employment, and social opportunities—the full gamut.

I was really interested in how people with disabilities have worked to resist ableism, marginalization, and oppression, and have worked to further rights, not just for disabled people, but for everybody. When we make the world more accessible, when we have better transportation systems, when we have curb cuts, when we have things that are better designed, when we have legal protections for people with disabilities, those benefit everybody. Anybody can become disabled at any time.

I got interested in the disability rights movement. I found this field, this whole field called disability studies, which is really kind of like American studies, but it’s a focus on disability, people with disabilities, and the social, political, and cultural aspects of disability.

Josh: You don’t necessarily have to have a disability to appreciate disability studies, I would imagine. It sounds like a super compelling field to me, not having a disability.

Andrew: Yeah, I think that’s a really important point. You can do disability studies and not necessarily have a disability, because a lot of it is about power dynamics, cultural assumptions and attitudes, how we value certain people and certain ideas over others, and the choices that we make in terms of public policy and every aspect of our lives.

I like to say that people with disabilities, we often get tagged as having special needs, right? The truth is that we don’t have special needs—we have the same needs as everybody else. Sometimes those needs need to be met in different ways. I think, for me, the most interesting, exciting part about disability studies is challenging people’s assumptions about what disability means, what it is, and what it means to be a human being.

Josh: Yeah, it’s interesting hearing you talk. I put together something I never really thought of before with disability. As you describe it, people in positions of power would, not knowing any better, try to help people with disabilities reach some sort of normative status. Like not having a disability is “normal”, and we want to help return them to that.

Andrew: Right, right.

Josh: With disability studies and raising awareness of more accessible design, urban design, that sort of thing, we’re actually trying to make it so that people with different norms of how they interact with the world are actually—it’s more diverse, rather than trying to pigeonhole everybody into what one norm is, if that makes sense. I just never put that together before. That’s really interesting.

Andrew: That’s exactly what I like about disability studies. Once you realize that our assumptions, our attitudes and beliefs, and structures of society, social and economic structures—they’re not inevitable.

Disability studies owes a lot to feminism and to the civil rights movement, the Black freedom struggle, and other social movements that have challenged inequality in society. A lot of the people that were involved in the women’s movement or the civil rights movement, they were disabled themselves. They came to a consciousness about inequality in our society that caused them to say, “Hey, yeah, I’m a woman, but I also have a disability. And how does my disability impact my access?” or, “I’m an African American, but I also have a disability.”

Disability, when we talk about it being intersectional, we mean that it is relational and it is bound up with other systems of oppression. You and I could have the same disability, but we experience it in a very different way depending on our cultural background, our social position, you know, our class, our level of access to education and opportunities. Again, that’s taking us outside of the biomedical model to say that disability is something more than an impairment.

Josh: It is socially constructed.

Andrew: Yeah. It’s a way of organizing the world around those defined as abled versus disabled. Even the word disability is kind of tricky because the word itself has a negative connotation. A challenge of disability studies is to think differently about physical and cognitive differences, and disability is not always visible. Sometimes it’s invisible.

Josh: I could see that being the case very often that a person may have a disability that’s invisible and walking down the street, and we would never even know it.

Andrew: That’s right. We can easily imagine a situation where they’re being misjudged or discriminated against. Historically, people with disabilities have been segregated from society, put into institutions. We’ve seen major progress over the last 30 years or so in moving people out of institutions and getting them into community places where they can be more full participants in society. There’s still a lot of work to do.

We made a lot of progress with the ADA in terms of making things like transportation more accessible, but we still live in a world that is dominated by cars. That works to the disadvantage of people with all kinds of disabilities. Our public transit is chronically underfunded. We have a massive public transit system here in New York, but one out of every four subway stations is not accessible to people with disabilities or people who use wheelchairs.

Josh: I’ve wondered about that. As an able-bodied person, I’ve never noticed that when I’ve been in New York that subway stations aren’t accessible.

Andrew: Yeah, there’s a whole lot of them that aren’t, and there’s still a lot of work to do there. That’s in a city where we have relatively accessible transit. Other places are even in worse shape.

Josh: You’re kind of filling my cup here with all sorts of facts that I hadn’t considered before about disability. It makes me wonder if, when you’re teaching students in your classes, if they have a lot of moments where the light bulb kind of goes off and they’re like, “Oh, I get it.”

Andrew: I guess, broadly speaking. We talk about the social model of disability, that disability is social, political, and cultural. That’s the big insight for most students who are just coming to disability studies because we are so steeped in the medical model. To just look at it from a different model is what changes people’s thinking.

I’ve been teaching research methods courses for several years now. That’s the main course that I teach each semester. One of the things that happens over and over again with students is that they come into a research methods course thinking about research as something that’s strictly scientific and it’s strictly objective. They kind of have a stereotype in mind of a scientist in a lab coat, quantitative data, and those kind of things.

Disability studies, in part, emerges to challenge conventional ways of producing knowledge. People with disabilities have been spoken about, spoken for, spoken to, but rarely get the chance to speak for ourselves. When you have a sort of a scientific establishment that has really sought in significant ways to eliminate people with disabilities, you have to take a critical look at that and say, “Okay, what is it about knowledge production that has gotten us into this place where we define some bodies and some lives as valuable and others as discardable?”

Josh: Oof. Yeah.

Andrew: Scientific racism, eugenics, that whole enterprise was deeply bound up in notions of disability and able-bodiedness.

Josh: Oh, true. You’re right.

Andrew: Whiteness as a racial construct is very tied to the notion of being able-bodied and being the ideal kind of person. That’s how people were able to justify enslaving human beings for centuries on the basis of, “Well, they’re not up to our standard. They’re not fully human.”

Women, LGBTQ people, and people of color, Black and brown people, all of these large categories of humans have been categorized using methods of knowledge production and rationalization. Part of the project of disability studies is to intervene and say, “Why does this keep happening? How can we think differently about human diversity and difference in ways that is not hierarchical and damaging?”

Josh: Right. I know at CUNY, you have people that come in who are already in the labor force; for example, social workers and people in those types of professions that are working with people who have disabilities. I could see learning some of these concepts and the social model for the first time being very beneficial for them.

Andrew: Yeah, I hope so. I had a meeting last semester with a student who’s been in disability services and supports for over a decade. She was working on a project to interview and hire some companions for people with disabilities that she works for. In the course of our conversation, it became clear that, in developing her questions, she hadn’t even considered talking to the person with a disability themselves about what they wanted in a companion.

You mentioned earlier the light bulb moment: this was a light bulb moment that I could literally see go off in our head as we were talking about this. I said, “Have you thought about asking them what it is that they need?” And she was like, “Oh, my goodness. I can’t believe it.” She was like, “Somehow I had this mindset that I’m the caregiver and I’m going to make these decisions for this person.” Even though she’s working on this advanced degree, has been doing it for a long time, is a caring, competent professional, she was still missing this huge, obvious thing where we should be talking to people with disabilities themselves and taking the knowledge that they have seriously.

Josh: Yeah. It goes back to what you were saying before about these norms that we carry around about people with disabilities needing to be cared for. Maybe that student kind of picked up a little bit of that throughout her life.

Andrew: Yeah. I think it’s still deeply embedded in this disability service sector, that there’s caregivers and there’s people that receive care. That divide is a false divide.

What we talk about in disability studies is interdependency, which is the recognition that we all rely on one another to make our way in the world. Nobody does anything totally on their own. We all depend on others to make our way. People who have a certain amount of privilege, they can create the illusion of independence, but it’s an illusion. We all rely on each other, there’s no way around it. That’s part of the human experience. Acknowledging that and embracing it instead of being fearful of it is important.

Josh: Gosh, that’s super fascinating because there’s so many layers to all this intersectionality that you’re describing. I could just ask you questions all day about it, I think. [laughs]

How has pursuing disability studies helped you in your own life? I could see this being very empowering for someone finding out about some of these concepts for the first time.

Andrew: It’s been really crucial for me in coming to terms with my own disability and my awkwardness, my awkward embodiments, my physical challenges and psychological challenges, and understanding the context that I’m not broken, I’m just different. I mean, I’ve experienced outright discrimination repeatedly. Having a context to understand that is really important because otherwise you can internalize that as a personal failure rather than a structural failure.

When you get hired for a job and then they find out that you have a disability—I was told once, well, we don’t hire your kind. You should have told us that you had a disability.

Josh: [groans] Gosh.

Andrew: That’s like, “What!? My ‘kind’!? What do you mean ‘kind’!?” Where does that come from?

Josh: Lot to unpack there.

Andrew: That’s what motivated me to get into this. It’s just like, how does that happen? How do people come around to that way of thinking, that they just literally dehumanize somebody so easily?

Josh: I love that you describe disability studies as emphasizing interdependence. That’s part of what I’ve been trying to do with this podcast project, is encourage people to see that we are all connected. Disability studies really sounds like it teaches a lot of basic concepts that would be useful not just for people with disabilities but across society. The way of thinking—it just sounds so different compared to in-groups and out-groups and us versus them. If we all work together, we can have a more equitable society that would benefit everyone.

Andrew: Yeah, I think that’s one of the main things that disability studies has to offer, is challenging our ideas about what’s possible, what is desirable, what is practical, challenging our assumptions about what counts as valuable and what doesn’t.

Josh: You mentioned the ADA before, and we’ve talked a little bit about accessible design. It seems like there has been significant progress in recent decades towards a more equitable society for people that have disabilities. Of course, there’s still a long way to go, but what sorts of opportunities for change do you see coming that excite you the most?

Andrew: I am really excited about some of the innovations that are happening with pedagogy, teaching and learning, making classrooms and online classrooms more accessible for students, and recognizing that students have different learning needs and different learning strengths. There isn’t one way to learn and there isn’t one kind of intelligence. That, to me, is really exciting as an educator to realize that now we’re getting more tools that allow us to connect with students.

In the traditional classroom at the college level, it’s a lot of writing and reading. What we’re figuring out is, how can we convey knowledge and teach people in ways that aren’t just writing and reading, but engage students in different ways; [for example] for students who are visual learners? How can we use different media and different kinds of text and resources to teach critical thinking and some of the key concepts alongside the traditional methods? [There’s] also opening up the classroom and knowledge production and sharing to a wider array of people.

We’ve had a lot of legal victories. I mentioned the Olmstead decision, the ADA, and the expansion of the ADA in the 2000s. One of the things that disability scholars and advocates have recognized is that legal protections, although they’re really important, have not necessarily yielded the kind of outcomes that we would have expected. Thirty years, thirty-plus years after the ADA, we still have a 70% unemployment rate in the disability community.

Josh: Oh, wow. I could see why, but that’s startling to hear.

Andrew: It is, and we’ve had the Education Inclusion Act since the 1970s. [Editor’s note: See the Individuals with Disabilities Education Act (IDEA) of 1975.] We’ve had it so that students with disabilities are supposed to be mainstreamed, but you can go to any high school in the country and you will see segregated classrooms for special ed.

We still have a whole field of special education. I don’t want to denigrate that field. There’s people doing good work in it, but it is a field that conceptualizes people based on their supposed ability or their supposed intelligence.

Josh: Yeah, it otherizes them in certain ways.

Andrew: Yeah. I hope that that’s changing, but it’s a very slow go.

In disability studies, we’re talking a lot about, “We have to move beyond the rights-based model.” We have to get rights, we have to protect rights, but we have to fundamentally change the way we think about things. A rights-based paradigm can easily slip into people who are deserving and people who are undeserving. I can have access to a building, but if people look at me as a person with a disability who doesn’t belong there and they don’t want me there in the first place, how much difference does it make that I’m able to get into the building if I’m not respected and fully included in the meeting that is going on in the building, if my sensory needs are disregarded, if I’m read as incompetent from the beginning?

Those attitudinal barriers, sometimes you call them, no amount of legal protection is going to change that. That’s a change that has to happen on a social, cultural, and political level. It’s not going to come with legislation or legal protections. As important as those are, there’s other aspects that have to be dealt with.

Josh: Yeah, I think basic compassion and empathy. You’re right, I don’t think legal protections are enough.

I wanted to frame some of those opportunities in a positive way and not see there’s still so much work to be done, but instead—like, it’s really exciting. How can listeners help out with these causes?

Andrew: Yeah, I mean, I think the very first basic step is if you don’t have people with disabilities in your life, go meet people with disabilities. Find a local advocacy organization that is made up of people with disabilities, that is led by people with disabilities. Go to events where people with disabilities are at. You know, July is Disability Pride Month. It’s Disability Pride Month because that’s the month when the ADA was signed.

Josh: Oh, I wasn’t aware of that.

Andrew: That was a major touchstone for people with disabilities. The whole idea of pride, which is to some degree borrowed from the LGBTQ community, it’s an idea of the disability is part of who I am, and I’m not ashamed of that. I reject the idea that I’m less than. I embrace the good and the bad.

Disability is not always great. It’s painful. It’s challenging. It’s difficult. There’s suffering and pain that goes with that. We don’t romanticize that, but we have to embrace it as part of life and part of living and stop trying to erase it, if that makes any sense.

Josh: Yeah, it definitely does. It sounds like the first steps are entering spaces or seeking out spaces where there are people with disabilities. I was just thinking, I’m on Reddit a lot, and I was thinking I could go into these communities, if nothing else, or look for communities and see what their perspectives are on different issues and gain some insight that way.

Andrew: Yeah. ADAPT is a long-time, direct-action, grassroots organization that was a leader in helping to pass the ADA. There’s ADAPT chapters in pretty much every state. There is something called the self-advocacy movement, which is made up of people with primarily with intellectual and developmental disabilities emerging in the 1970s and basically saying, “Stop calling us retarded.” Literally, [it was] people just saying, “Stop calling me retarded. Stop treating me like I’m less than a person. I’m a person. I can advocate for myself and for other people.” There are self-advocacy chapters pretty much in every state, in every community. Of course, there’s [also] a lot of organizing around specific disabilities.

I think the most important thing is just to go meet people with disabilities, talk to people with disabilities, and get comfortable around people with disabilities. Most people, I think, if they’re not around people with disabilities, people who use wheelchairs, people who are amputees, or whatever, there’s a certain level of discomfort when they encounter that difference. You really have to break through that barrier and spend time with people as people. That’s going to help you figure out how you can support people with disabilities and where you’re going to fit in.

Josh: Yeah. It goes back to what we were discussing earlier about making sure we get their perspectives rather than just assuming what we want to justify our own values when looking at people with disabilities as a group. That’s good advice. I appreciate you sharing that.

As we’re winding down here, how can we follow you? Do you have a social media profile?

Andrew: I don’t have much of a social media profile, and I probably should do better at that, but I don’t seem to find a lot of time. [laughs]

Josh: It’s understandable. I thought I would ask.

Andrew: You can look us up online at the CUNY School of Professional Studies. CUNY, the City University of New York, is a huge system of 25 schools. Our school is the School of Professional Studies. That’s where our Disability Studies programs are housed. We host two Master’s degrees—a Master of Science in Disability in Higher Ed, and a Master of Arts in Disability Studies—a Bachelor’s degree in Disability Studies, and two advanced certificate programs. We’re the largest program of its kind in the country.

If you are active in social media, there’s a number of different groups. There’s a group for people who teach disability studies on Facebook. There’s all sorts of groups for people with disabilities doing disability advocacy work. You got to just look around for it and curate your feed to get news and information from a disability perspective, it’s definitely out there.

There’s lots of interesting, exciting stuff happening, like with YouTube and social media. People with disabilities are producing content at a level that we’ve never really seen before, and putting out perspectives and views that prior to the development of social media and this technology would not have been possible. The fact that you and I are able to talk remotely is a huge boon for a lot of people with disabilities who’ve struggled to be included in spaces that are not accessible. The emergence of digital technologies has created a lot of opportunities for people with disabilities. You can definitely find a rich archive of things online if you know where to look.

Josh: Well, thank you, Andrew. This has been really enlightening. I could ask you so many more questions, but I really appreciate your time. I hope you have a good day.

Andrew: You too, Josh. I enjoyed it very much. Thank you.

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