The Pioneers podcast convenes the world social change makers to share their knowledge, challenge our assumptions, and offer practical solutions for a more equitable future. The Pioneers podcast is hosted by HeartShare Human Services, a non-profit supporting and empowering marginalized New Yorkers since 1914.

Today we would like to talk about developing disability studies with Dr. Mariette Bates. Mariette Bates is a distinguished lecturer and Academic Director of disability studies programs at CUNY School of Professional Studies. Dr. Bates was program director at One-to-One, started by Geraldo Rivera after his exposé of the Willowbrook state school. She then co-founded the Maidstone Foundation, assisting Russian-speaking immigrants with disabilities. Mariette earned her Ph.D. in philosophy and developmental disabilities from the Union Institute. She’s delivered keynotes around the world and has more awards from universities and advocacy organizations than I can list here. Welcome, Dr. Bates.

Mariette: Oh thanks! I’m happy to be here today.

HeartShare NY: So I really admire the work that you’ve done in cultivating disabilities studies in the academic environment. I wanted to ask how you’ve developed and grown disability studies at CUNY?

Mariette: Well there are a lot of answers to that. I should give some credit to my colleagues because my program isn’t the first. I would say that there are programs at Syracuse University that are based in the law school and in the Department of Special Education, in the Education Department, that really created disability studies programs before I did. The one that’s really best known in the country is the one at the University of Illinois at Chicago, which predated my program so I don’t want to give the impression that mine is the first disability studies program, but really our program started with John F. Kennedy Jr. many years ago in 1989, who was charged by his aunt to do something for folks with intellectual disabilities because of his family’s long connection to intellectual disabilities. So he came to CUNY and he decided that he wanted to create courses that front-line workers could take, direct supports professionals in particularly, that would enhance their knowledge of the field, increase their commitment to the field, and give them a career path. He created courses starting about 1989 or 1980, and at one point every department at CUNY had courses in developmental disabilities. Then, over time some of those courses fell by the wayside, but some kept going. I used to teach at the City College’s Center for Worker-Ed and we had a certificate program in developmental disabilities. Then, about the year 2000, our Dean of Health and Human Services here, Bill Evans, and he’s now gone on to something else, so he’s not the Dean anymore, but he decided that we should really invest in a disability studies program. So he was the one who started the first Advanced Certificate here in disability studies, and we started offering that in 2004. I was a participant in the certificate program and then I was a faculty member. I’ve been an adjunct faculty, I came and taught those classes. Then we thought that people would just get this certificate, which was for courses on the graduate level, and they would go back into their professions and take what they had learned back into their regular venue, but what happened was they started taking courses and they liked them so much that after they’d amassed not only the 12 credit certificate, but then 18 credits and 21 credits, they said, “You should turn this into a Master’s already because we like these courses.” So, we did that and we launched our program, which is a Master’s of Arts in Disability Studies, in 2009. A lot of those initial certificate students then went on and got their Master’s. Then after I had been here a while, I realized that there wasn’t a Bachelor’s program in Disability Studies and I was very concerned about still, the front line workforce. The mission of my school, which is the School of Professional Studies, is to enhance the careers, and work with, and educate the frontline workers of New York City. So again, those folks who were direct support workers, and their supervisors, often didn’t have a career path. So I created the first online Bachelor’s in the country, and I put it online so that those people who are awake overnight, who couldn’t get to the campus, could take these courses. I’ve been running the Bachelor’s program, the Advanced Certificate program, and the Master’s of Arts in disability studies now for a while. Then, in 2015 I launched a new program because we have so many students in our program who have disabilities. We provide accommodations, educational accommodations, to them so they have access to those materials, and then I realized there wasn’t a program in the country to prepare people to accommodate college students with disabilities. So I created a Masters of Science in Disability Services in Higher Ed. Now I’m running all of those programs and it’s neat. Our programs there are programs I think are really good, and the students are just wonderful. They’re wonderful.

HeartShare NY: It seems like you have not only met a need, but you’ve developed very popular courses because it seems like the initial cohort had such an insatiable appetite that, “We went through these four courses and we want more!” What do these courses look like? What are they?

Mariette: Well, one of the things that happens when you work for a service agency is that you’re employed and if you come in they train you in medication, giving medication, and S.C.I.P training, and the rest of it. They show you the Willowbrook film, but often there isn’t a place to really explore disability in depth. So for people who are committed to the field and really want an opportunity to really unpack disability in society, our courses let you do that. On the Bachelor’s level we have some more applied courses. There’s a course in person-centered planning, for example. There’s a course in crisis intervention. There’s a course in traumatic brain injury, and of course in aging and disability. We have a concentration in intellectual and developmental disabilities, one in autism spectrum disorders, and one in mental and behavioral health. So if you’re working in any of those of agencies and you want to know more kind of practical knowledge, those courses will help you, but we also have a course in disability history, and one in disability law and policy on the Bachelor’s level. We also read the narratives of people who have disabilities. We read first-person accounts of what it’s like to be a service recipient, and that, I think, gives people insight into what some of the people they’re serving might be experiencing. On the graduate level it’s a little bit less applied, and more theoretical. We do have a course on law and policy on the graduate level, but also one in disability and diversity. We have a course in disability and mass media, where we look at how disability has been represented in television, and newspapers, and other sorts of similar mass media outlets. It’s a really multidisciplinary look at disability. Some of it is disability history and some of it is more practical. We have a course on disability service administration too, so we look at how to run a person-centered agency and still meet all those kinds of administrative requirements. It’s really interesting.

HeartShare NY: It sounds really interesting. I really think that you have sort of devoted yourself to ensuring that the folks that are going to school for professional studies get that training on the Bachelor’s level, but also if you’re going a more theoretical route you get to see the intersection of disability in history, and disability and law, and that all seems like something that would be of interest. Do you still have to rationalize to people, to academics, to the public, to students, why this is an important area of study?

Mariette: I think that it’s a new area of study. There are certainly many more programs than there were when I first started teaching Disability Studies some time ago, over a decade ago, but it’s not a household work the same way that social work or psychology is. So yes, I think that here at CUNY, people have embraced it, but I think that one of the questions asked to me all the time is, “How do I develop this in my university?” There is some sort of resistance. I think people don’t see it as a real academic area of study. I think that, with one in six people in this country having a disability, it’s really important to study about their lives and to study the aspects of disability. I think it’s very important. I think if we don’t learn the history then. There’s that whole statement about if you don’t learn history you’re doomed to repeat it. So I worry about that, but also, to tell you the truth, one of the things that is worrisome to me is that the people who mentored me are now no longer with us. They’re not running agencies anymore. Many of them have passed away and I worry where the next group of leaders is coming from, and how we can give them the knowledge they need to innovate, and to take the ideas that they have and make them a reality to serve people better. That’s kind of why I’m here, and I do think that disability studies, nationwide, is still kind of phenomenological. There aren’t a lot of programs out there, but they’re growing.

HeartShare NY: You sort of described in your program that there are a lot of students with disabilities. Where else is the interest? Because I don’t know if students coming into a program would ordinarily say, “I want to go into disability studies,” unless it touches them directly or maybe they have a family member. Who usually enrolls in the disability studies programs?

Mariette: Well, we have we have different groups. I mean there’s a group that works in agencies. Some of them want a Master’s Degree because they’ve worked and they know that they need a credential in order to progress in their careers, but they also want to know more about the field that they’re in. So we do have a substantial cohort of people who work in service agencies. We have a group of people who have disabilities and they’re interested in really studying about their own. They’re using their own lens to study disability and to examine their own life histories in the larger context, and society, and disability. We have some people that want to become Academics and we have graduates who are in Doctoral programs now, or who have completed Doctoral programs. We do have a group of people that are working in the government. For example, one of our graduates is the Commissioner for Disabilities for the City of Boston. We have another graduate who’s working for the Mayor’s Office for People with Disabilities here in New York. Another one of our graduates went to work in Texas for the governor on disability policy. So, we do have people that are interested in that side of disability as well, and that kind of disability policy.

HeartShare NY: It seems as though they’re becoming the leaders, nationally, in these different states and in different cities. So, why are you facing these challenges in bringing disability studies to higher education? How do you go about sort of saying? “This is an ideal program model. This is something you should do.”

Mariette: Well I’m very lucky in a way, and I think, in a lot of ways. One is that CUNY is a huge institution and the idea of bringing disability studies to CUNY really sort of happened right around the same time that our school was created. The School of Professional Studies was created by CUNY to focus on workers in New York City, and educating workers. It didn’t really have departments that were entrenched in the same way that you might find at other universities. So they were very interested in creating something that was freestanding. The other disability studies programs in the country are kind of attached to a department. So with Syracuse, it’s the Department of Education, but it also has some affiliation with the Department of Law, for example. They have a real grounding in disability studies. At the University of Illinois in Chicago, I think it’s the Department of Human Development, so they’re kind of attached to an academic department, but here at the School of Professional Studies, we’re kind of our own entity. That means that we really can pull from interdisciplinary fields. So, I think that one of the real issues that people have in trying to create disability studies programs is where to locate them in an established University. Here at CUNY, we have about 70 people at CUNY that are interested in disability in some one form or another. There’s a distinguished professor of music, for example, who’s been publishing about music and disability. We have professors of English who have been writing about disability. So there’s kind of a consortium of people that have been interested in that, some of whom were teaching for our program, and some of whom are teaching in their own departments. I would say at other universities there are similar cohorts, but it’s hard to find them and pull them together into a coherent whole, and that might be a challenge that more established University programs have.

HeartShare NY: Right, and you think that’s where our university will be able to start sort of gathering together the interested instructors and professors who would want to facilitate this kind of a program.

Mariette: That’s right, but then you need the willing of the folks at the top to kind of throw their hat in the ring and realize that it’s really important.

HeartShare NY: Absolutely. You’ve been a part of the developmental disabilities field since the time of the Willowbrook exposé, and so I wanted to ask you how has the nature of this field changed throughout the years? I mean you’ve tried your hand in many different areas. You’ve worked in non-profit foundations, academics. How has serving people with developmental disabilities changed since the time of Willowbrook?

Mariette: I think one thing that’s been so strange is watching the development of the field, because the field we got isn’t the one we intended to develop. We had this vision that the services really would be based in the community. We had a vision that if a parent had a child with a disability, you could go to the local shopping mall and there would be a storefront there where you could go and get the services you need for your kid. What’s happened is that, and the big stumbling block was essentially how to pay for services, so what we’ve gotten now is a reversal to the medical model to some extent. In other words, these services are paid for largely by Medicaid, and that has shaped the service system in a way that I think we couldn’t have anticipated back in 1972. I mean what I think, is that a more rational way of funding services would be to have it blended. So a blended way of paying for services because a person doesn’t exist only in a medical system, they also have vocational needs, and they also have social service needs, and they also have educational needs, but we’ve chosen to pay for services through Medicaid. I worry a lot that 20 years from now, the people who are funding these services will say, “Oh, community skills training? That doesn’t seem like a medical issue to me. I don’t really see why we should be paying for that.” So I think the service system has changed in that, when we first started kind of developing community programs, none of us really knew what we were doing. We had to innovate a lot. That was very exciting, and we learned from each other. We had a few very, very talented people who are really smart who kind of led the way. I think now, the service system is more mature. It’s more developed. I think that the voices of self-advocates have been very important, but I also think that when you’re paying for things solely by medical means that, inevitably, the lens you look at services is a medical lens. I think that people with disabilities, and intellectual disabilities in particular, aren’t sick. They really just need a variety of services. So one of the things that I think when people were in Willowbrook, they were in some institution that was really called a State School, and theoretically was going to give them education, but really, it was also a State Hospital. We sort of looked at disability through this medical lens and I thought that the revolution that we made when we were taking folks out of Willowbrook, was that rather than looking at people as in need of kind of medical intervention, we started to look at them in needs of educational intervention, and skills training, and help with decision making. I worry now that we’re back to a medical model again. That’s worrisome to me.

HeartShare NY: I mean given that direction, what do you think the future of developmental disability services is? Do you think it’s going to be driven by where the money is coming from?

Mariette: I think, inevitably, that happens. I think that agencies are dependent upon their funding sources. So part of it depends on the philosophy of the people in the federal government. As those funds flow through the Department of Health and are regulated by OPWDD, where the pushback comes has to be strong advocacy on the part of parents and self-advocates to push back against that. Which is possible, but it takes it takes a lot of energy, and people are busy and so on. I don’t want to say this is all doom and gloom. I think that we have a lot of people in New York State that receive really terrific service and services every day. I’d like to see that continue, and I’d like to see the youngsters that are coming along that are going to be born with disabilities receive that kind of exemplary services as well.

HeartShare NY: Do you think that the new generation, on needing services, will be able to focus on person-centered planning and self-direction? Because from my very basic understanding of it, there is a conflict between what’s funded and then the time and the effort that it takes to actually implement something that’s very customized like that.

Mariette: Yeah. I’ve been part of circles of support that were supporting people who had gone through a person-centered planning process. With the time that’s allocated you really can’t do it when you might do a planning process, but then the follow-up visits to really make it work are not funded in any way. I think it’s a real issue. I think that there’s always a tendency, when money is a problem, to reduce eligibility for services. I worry that there are folks who could have quite happy and productive lives but are going to fall through the cracks and not get the services they need because they don’t meet eligibility requirements. In 1978 or so, the idea was to include as many people as you could in the service system because they realized that the people who were likely to fall through the cracks, if they received a little bit of help, whether their family support or some therapy or something, that they basically could do much better. If they didn’t get that then they were likely to have less productive and less happy lives. So yes, I think funding is a big issue. I think that true person-centered planning is person intensive, and that becomes an issue too when funding is scarce.

HeartShare NY: Of course, what can our listeners do to support people with disabilities?

Mariette: I think that some of this is pretty common sense. I think that arming yourself with knowledge about the system is really important. To be honest, the system is complicated. It’s complex. So learning about the nuances of the system is something that I would expect parents and loved ones might do, siblings might do, but I wouldn’t expect the average Joe and Jane on the street to do it. I do think that most of the people that I’ve met in my life are happy to include people with disabilities in their lives in some way if we don’t create barriers to doing that. I think it really would be very useful if we started young with kids, talking about disability as history in high school. We made sure that our programs continued to be inclusive in the education system, that people got early intervention services so that they could participate more fully in inclusive classrooms, and so forth. I think that those relationships are very important because if you grow up with these people, you’re more likely be their advocate than if you don’t know them. So I think that’s really important, and I think watching the budgets, watching what’s going on in Albany– Are we paying the direct support workers what they really need for the job that they do? Which is terrific, and difficult. How much emphasis is there on really educating them? How much value do we put in these jobs? I think that’s really important to understand. These are very important workers in this field that are supporting people, and the work they do is challenging. They deserve respect and a decent pay for the work that they do.

HeartShare NY: Yeah, those are a lot of great concrete ways that people can take action. Policy, education, being a good person, just being open minded to new things.

Mariette: Well, I was just saying that these current efforts on the federal level to gut the Americans with Disabilities Act make it harder for people with disabilities to have the kind of access that they need. I think that the average citizen understands that’s wrong and that they can talk to their Congresspeople and make sure that doesn’t happen when this bill gets to the Senate.

HeartShare NY: It is really difficult to imagine, that in all these years that the ADA has been in place, that businesses have been able to circumnavigate and are still trying to sort of duck it. At this point, it’s outrageous. It really is, but that’s a good point. People should keep that on their radar. If people want to learn more about you and your work, especially if there’s, say an administrator out of university and they’re saying, “Oh, well maybe Dr. Bates has some advice for me,” how can we get in touch with you?

Mariette: Well you can find me on the School of Professional Studies website, but my email is mariette.bates@cuny.edu, and that’s probably the best way to find me because I’m usually attached to my email. So it’s mariette.bates@cuny.edu.

HeartShare NY: Wonderful. Is there anything else that you’d like to add?

Mariette: No. As I said, I think that having spent 40 years of my life, over 40 years of my life, working on these issues, I have to say I have a sense of gratitude. I feel so lucky that I entered this field because it’s been so interesting. I learn something new about disability every single day. I found colleagues in the field that are just inspirational- both the parents I work with, and the individuals with disabilities, and people that are supporting them. It’s really been fun in a lot of ways. I was able to do some wonderful work, and not just me, but all of my colleagues nationally who are working on these issues of the institutionalization, and creating community programs, and social justice issues, and equality, and providing access for people with disabilities. I want to encourage anybody who’s listening that if you’re thinking about going into serving people with disabilities or being a disability advocate, as a field, it’s just been a terrific way to spend most of my work life. I would encourage anybody to do it. The people that you meet along the way are just exemplary, and it’s really nice to fight the good fight and occasionally win one. You lose a lot, but occasionally, you win one. Those moments are just transcendent.

HeartShare NY: That’s wonderful. Thank you so much for your work, and your service, and your advocacy. I mean, you’re an inspiration. Thank you for joining us and talking to me today.

Mariette: Sure, you’re welcome.