Welcome to Disability Empowerment Now Season 2. I'm your Host Keith Murfee DeConcini. Today I am talking to Dr. Mariette Bates, the former academic director of the Disability Studies Program at City University of New York School of Professional Studies. Mariette, welcome to the show.
Mariette: Thanks, Keith.
Keith: So I've known you for years, and I will get into the genesis of how the program you founded launched, later on in the episode.
But please tell us how you first got involved with disability studies, disability rights, and how that evolved throughout your life.
Mariette: It's a long and sort of funny story. Um, so back in the 1960s and seventies, I was a singer and I had a band and I lived in New York.
Keith: Wait, hold on, hold on. You were a singer. And you had a band. What did you sing and what did you play? This is brand new knowledge to me.
Mariette: Well, so we were singing sort of country rock and I lived on a boat in the Harlem River with my boyfriend Larry, and we had a band and my relatives thought I was a dead beat and that I would never amount to much, because I was living in this very dilapidated boat basin where I was the only woman and most of the other boats were sunk
So they decided that I should go to work for my two aunt's, Aunt Virginia and Aunt Mildred. And they had a secretarial service, which was a public secretarial service. So if you were coming to New York and you wanted a resume typed or a contract or something like that, you would come to their secretarial service, which was right across the street from the stage entrance to Carnegie Hall.
And they had a bunch of really interesting clients like Bill Cunningham, who was a Times photographer and lots of music publishers and theatrical people, and Anita Loose and so forth. Rudolph Shermer, who was a music publisher, but one of their clients in the secretarial service was a man who was a disability advocate, and he had a personality very much like Donald Trump.
He used to come bursting into the office and he would start yelling about disability and particularly folks with psychiatric disabilities. And my aunts would get very upset because they had all these guys waiting for their resumes to be typed and he would just come bursting in. So whenever he came in, they decided that I would be the person who would deal with him.
So I started typing his testimony for the legislature and so forth. And then after about a year or so, he got a grant from a local foundation and he hired me as his administrative assistant. So, he rented an office down the hall from Aunt Virginia and Anne Mildred. So I moved down there and he wasn't there a lot, but in his office were all these publications and books about disability and particularly about psychiatric disability. So when he wasn't there, I would read.
So I read all the stuff in his office and I, you know, I started to type his testimony and then people would call up, and this was about 1975, I wanna say seventy four, seventy five. And they would call up and they would say, I'm in Pilgrim Psychiatric Center, and they're overmedicating me. I need help.
So I learned over time through asking him what I should do when these phone calls came, to help people. So one of the things about him, he was one of the people who exposed Willowbrook. If you look at the original Willowbrook footage, he's in the tape with Heraldo. A man named Max Schneider, who was instrumental in founding the National Alliance on Mental Illness.
Max was a very good advocate and he taught me a lot, but he was a really bad fundraiser. So after a few years they turned the lights out, and he couldn't pay me anymore. So he called up the people from the foundation where he had gotten the grant to hire me, which was for Geraldo's Foundation, One to One.
And he said, I have a secretary here, you know, and she's pretty good, so I think you should think about hiring her. So I thought I was gonna get my band together and I went to this interview and said I didn't wanna work there, and they were so used to people who were so wowed by them being at ABC TV and the whole mystique around Geraldo that when I said I didn't wanna work there, they were determined to hire me.
So because I was different from everybody else. My boss, who was this 25 year old Whizkid, you know, persuaded me to come to work there three days a week and then three days a week turned into five days. The band fell apart. My boyfriend decided he wanted to be a sea captain, so he went off sailing around the world to get enough hours so he could get his captain license.
That's how I got into the disability field, and it was so exciting being there because you really felt part of something bigger than yourself. We tried to bring people together. We had a library for people who wanted to develop programs on community care and we were giving seed money grants to organizations that wanted to develop programs for people coming out of Willowbrook.
So it was pretty heavy and besides that, we did all these crazy fundraisers. We did charity boxing matches in Madison Square Garden, and we did dance marathons at the CopaCabana and concerts. So the last concert John Lennon ever did, he did for that foundation. Chicago did concerts for us, and so did other people.
We did walkathons in Central Park and you know, those things are pretty common in terms of fundraising for nonprofits, but in those days they were kind of creative. We tried to do fundraisers that would be fun. We tried to involve a lot of young people in them so that they would get used to the idea that these folks coming out of Willowbrook belonged in the community and were like them, and they were so idealistic and stuff.
So I stayed there for seven years and I learned an awful lot. And then I started my own nonprofit with the man who had been my boss at One to One and we worked on providing help for the people least likely to get it. So people had rare disabilities or multiple disabilities, genetic disorders that weren't very well known.
I did that for about 10 years and then I started working with folks who had language or cultural problems getting services. So I worked in the Russian community. My partner Duncan Whiteside, who became my husband many, many years later, learned Russian in the Army. So he spoke Russian and he was a parent of a child with an intellectual disability.
So he was very good at talking to other parents in particular, and I was pretty good at things like making sure the books were all balanced, getting all the reports in that had to be done and stuff like that. So at that point I didn't have a bachelor's degree. I didn't get a bachelor's degree till I was almost 40.
Then I went and got a kind of combined master's PhD in philanthropy, which is what my doctorate's in with a particular emphasis on disability. So I studied the whole nonprofit sector, individual giving and nonprofits foundations. Voluntary action for the public good, but as it relates to disability, So that's kind of a short version.
I started teaching courses in intellectual disability, developmental disabilities at City College in about 1993 and in those days I didn't, you know, disability studies and this different perspective wasn't on my radar. So it wasn't until Bill Levinstein at CUNY started to develop a disability studies program and then, I came in and I went through the first certificate program because I needed to learn about it. And then I came in and started teaching. And then I came to direct the program in 2009, just launching the Masters of Arts and Disability Studies.
And then eventually I developed a bachelor's degree in the field, which was the first one and then the Master's of Science and Disability Services in higher ed and some advanced certificates along the way. So, I had fun with it.
Keith: It sure sounds like it. You just recently retired from your position. How is that going, how is that like? Something I am very curious about is that I took a course my final year with your successor Drew Marcom who I am interviewing next season. How was it choosing him to follow in your footsteps? All of those questions.
Mariette: Well, so the truth is that, you know, my husband Duncan, who, you know, I married when I was almost 61, had Parkinson's disease and dementia.
So for the last three or four years, and particularly during Covid, I was taking care of him and also running the program, which is exhausting if you are a caregiver, you know, as any parent will tell you, but also caregivers. I originally told the School of Professional Studies that I thought I needed to retire because I thought as his disease progressed, as his Parkinson's got worse and his dementia got worse, that he would need more care and I would need to stay, really stay home and take care of him and not be able to work.
You know, I have to say it was exhausting trying to do both of them, they're both full-time jobs really. Right. Yeah. It's not that I didn't have a little help, but really for most of the time I was the primary caregiver.
Then he died. So, you know, he died a year ago last June. So, then I was kind of numb for a while.
And exhausted. So I told my boss at that point that I thought it was best if I left. Not only because I wasn't giving, you know, I was giving about 98%, but not a hundred percent to my job, but also that I'm 72 years old and, so it's, and being the founding director of this program, it's really important to make sure that it can stand on its own two feet and continue after I was there.
You know, nobody's irreplaceable. And, you know, and I have my own particular quirks and blind spots about disability and gaps in my own knowledge and therefore it's really good to get somebody else with a different perspective to take the program over. So we did a national search for my replacement and we had, you know, a lot of applicants, for my job. And I would say that we had a search committee, a formal search committee at the School of Professional Studies, and we interviewed, I think six finalists for this position, and to be honest, I think that, you know, disability studies, it's a funny academic discipline because it sits between the humanities and the social sciences and, and our school is, an anomaly to some extent in the educational world because although functionally I was the chair of the program. We didn't really have a lot of full-time faculty.
We only had one person and the rest. So you're supervising a lot of adjunct faculty. But also we're doing a lot of other things like marketing and admissions and so the sorts of things that chairs don't do and I think that a lot of the other finalists were quite good disability studies scholars, had published things, got the theoretical part of disability studies, which is important, but many of them didn't have, they weren't grounded in the actual service field and particularly in our bachelor's program so many of the people in our programs are direct support professionals or power professionals in the field. And so it's important for them to understand the theoretical part of it, but they also need to understand how it applies to their day to day work and.
So of the applicants, Dr. Markham not only had that theoretical piece, you know, he's got a doctorate in American Studies.
He did work at the Smithsonian in museums and he was affiliated with our sister, another disability studies program at Buffalo, which is a, you know, terrific program that Mike Reba started. So he has that, but also he was working with self advocates, so he was grounded, day to day trying to help people in a practical sense.
And I think, you know, he was clearly the favorite of the finalists. Not that any of them, you know, a lot of them could have, I'm sure have stepped into this role, but many people in academia are used to research and publishing. They're not used to having to do marketing or any of the other kinds of activities and administrative work that we had that comes along with work at our school.
So I think, because Andrew had been teaching in the program also, he knew a lot of the adjuncts already. He had been a faculty member, so he had been doing peer observations and stuff. So the search committee, he was the clear favorite and I'm really happy that the negotiation with him, which I was not involved in, worked out, and that he's been able to take over because it's a very complicated job.
You know, you have to kind of be a generalist in the field, you know, we have people in the program that are interested in psychiatric disabilities, people that are interested in intellectual disabilities, people who work in those fields. A substantial number of students have disabilities of one kind or another.
We try to hire faculty with disabilities as well. So it's a lot to kind of manage and make sure that people are, you know, that the program is current, that it really represents developments in the field and that our students are getting something that's gonna help them when they graduate.
So, I hope I answered that. I tend to ramble, so, sorry.
Keith: Well, I'm going to follow that up with how I got involved with the program. So I came to study at the then University of Arizona, in fact that is still the name their acronym has just changed. In the Public Administration Program, the Masters of the Public Administration, and I was making my way through that program and I needed a concentration, and if I didn’t like any of the ones they had pre-created they would allow me to create one of my own. And so I created one in disability policy. Did I know what disability policy meant at that time? No, but that's not the point.
At that time, they only had Special Ed and Rehabilitation and so with some research from my then life coach, we were able to find several disability studies programs throughout the country and we settled on New York because I am originally from there. We still maintained a residence there, my mother has business connections and so it is like the back of my hand. Really when I get there it takes me five minutes to pull up the whole map and learn the whole environment again. So I originally started in your certificate program and I loved that a lot more than I loved the course work in my masters program at the time, we can make no bones about it.
It was only until after I completed the certificate and was actually back here in the program, that I found out that you have done half of the masters degree already. I was like oh shoot. What do I do now? So I paused. I completed my masters in Public Administration, got distracted by a medical fellowship for a year and took courses online because at that time you were also hybrid. I think when I started you were just in person, then hybrid and then what brought me back is that I found out through the grapevine, meaning the emails you guys still send to me, is that you were closing your in person and transferring to a fully online program and I thought well I started it in person, this will be like a homecoming in more ways than one.
So that is the long and short of how one program that absolutely has nothing to do with disability studies really motivated me to find the program and I spent eleven years in Higher Ed and I managed to get two Masters degrees by accident, I don't mean to brag. But literally that is the story I tell, this was never part of my plan. I got my Bachelors in Creative Writing and I was very happy with that and I didn’t want to continue but I had to. So it's amazing how things fall into place and work out. Had I known about the Masters, I would've gone directly to New York because that's what my passion is. But yeah, so that's the story of how I turned up on your professional door step.
Mariette: I remember. I remember meeting you, I remember when you came to see me in my office on the corner of Sixth Avenue and 31st Street all those years ago. Well, I'm glad that you came back. I mean, I think that the certificate is, you know, it could have been designed for people who want it, it could be standalone, but a lot of the people who take the certificate go on to the Masters.
You know, I think that there's starting to be more and more, more and more disability studies programs. Some of them are more applied, some of them, you know, more traditional disability studies, but it's not a household word yet. So, you know, it's not like you can go to a party and say it's disability studies and they know what it means like people know what psychology is or a degree in social work.
So I think that, for some people, they enroll in their certificate program because they're not sure what they're getting themselves into and they figure, you know, that they could complete four courses anyway, but a lot of them then decide they really like it, so they keep going, for the Master's degree.
And we do, we have a couple of students who did both, they did both master's degrees too, so that's interesting.
Keith: Yeah. I mean, when I started the certificate, I planned to complete the certificate and then stop. That was the plan. That did not go the way. Where the last in person graduation was, was extremely special for me in a very personal way because it was right in Lincoln Center and the apartment that was right next to, right across the street from Lincoln Center is the apartment that I lived in for the first five six years of my life.
Mariette: Wow. And so that's, that's so interesting because, you know, the ASCAP building, which is, you know, on Broadway was where the Geraldo’s Foundation was, where I worked for all those years, and where we used to do graduations was the, in that building is now called, if you, if you look up, it's called the Irene Diamond Building, but that's, that the Diamond Foundation was what I did my doctoral dissertation on. So I knew Irene quite well, and so whenever I would go to graduation, I would go. It was so nostalgic, you know, that I spent so much of my life.
So it's so interesting that you spent so much of your life right around there as well.
Keith: Yeah. Our apartment was 18L and so not only was completing the program a homecoming but also where the graduation was, it was as you said very nostalgic. So take us back to the first year you stepped in to be the Academic Director. What was that like? You mentioned your colleague, who I believe I met at one lecture really created it.
Mariette: He did. Bill, you know, the program, just going back, to some extent the genesis of the program happened because of John F. Kennedy Jr. because back in the late 1980s, his Aunt Niece Shriver asked him to do something for the field of intellectual disabilities. And what he chose to do was to create courses at the City University of New York that would be appropriate for people who are providing direct services to folks with intellectual disabilities. So those DSP types of folks who really didn't have a career ladder, still don't to some extent.
So at one point, I think every campus at CUNY was offering courses in introductions to developmental disabilities or issues for adults, something that was pertaining to that work and the foundation. So it was a partnership with John F. Kennedy Jr. CUNY provided the courses, and John F.Kennedy Jr. had a program called Reaching Up, which provided enrichment, it provided some tuition support. If people wanted to go to conferences, it would pay for that. They had a mentor who worked in the field and there are about 800 Kennedy fellows that went through that program, got degrees at CUNY.
I think eventually it extended to the master's level and then after John died, the program, you know, continued for a while, but then it kind of fell by the wayside. So, at that point, Bill Levinstein was the director of the program, that joint program that John F. Kennedy had with CUNY and, so Bill, this became the Dean of Health and Human Services at cuny, but he was the one who initially started to develop the certificate, the initial advanced certificate program that you went to.
And the School of Professional Studies started in 2003 and it seemed like an ideal place to put the certificate because it was more flexible and less stultified than a lot of campuses are. So that's where the advanced certificate was placed and I came to teach, as I said, I went through the program. I came to teach in, I wanna say 2005 as an adjunct.
Then the school originally wasn’t permitted to give degrees. We were supposed to be continuing Ed and only do certificates. But shortly after the school started, the chancellor gave us the opportunity to award degrees and at that point, the proposal was put in for the Master's of Arts degrees.
So, at that point, I came on to launch that program and to run it. And then I looked at other gaps in the field, which is why I created the other programs that I did. When I first started out, as I said, we were developing a school we didn't have a building yet.
Some of our folks were at the graduate center, some were on 31st Street and Sixth Avenue. Sometimes I taught at the graduate center, then we taught up on 40th Street for a while. Sometimes we taught at 42nd Street. We were, you know, all over the place, but we didn't have a marketing department.
Originally, when I got to the School of Professional Studies, we would fax the students a list of what we were offering and they would mark on the fax what they wanted to take and fax it back. We had this wonderful woman in the registrar's office named Jennifer Lee, and she would, you know, make sure that everybody was registered for courses.
We didn't have a marketing department. We didn't have an admissions department, what else?
So we kind of had to do everything ourselves. We barely had a personnel department. I think we had a more informal system of hiring adjuncts, we didn't really have classrooms of our own, so we had to beg them from the graduate center, and they always used to give us the worst possible ones.
You know, we had one that was so dark. It was like a long classroom that was dark, and our students were kind of crammed in there until I you know, I kind of made a stink with the registrar and said we needed different classrooms because we had students who used wheelchairs and it was a, you know, it was like a health hazard to have them like crammed into this little room.
We didn't have an accommodations office, so we had students who had disabilities who wanted to study and, you know, I would say we still have many more students with disabilities than you would find in other departments at CUNY, but, because we were still attached to the graduate center in a way that we're not now.
We used their accommodations office, but they were kind of slow to respond. So, you know, our students couldn't wait a month to get a textbook scan for them or something like that. So that was a big scramble; was really trying to get people what they needed. Now I would say things have improved quite a lot.
Many students with disabilities and faculty were much better in the online environment making things accessible for our students, which is really important. And it's not just our department. Other departments at the School of Professional Studies are also, I think, aware in a way you might not find at other campuses, of the needs of their students who have disabilities.
It's been sort of interesting, you know, doing this startup, and now having a much more sophisticated departmental structure and people who are out there, supporting us. So it's less intense, but we have a lot more students. You know, when I first started we had about 25 students. We have over 300 now, so.
Keith: Wow. How many years since you’ve retired?
Mariette: It was about 15, I think.
Keith: Wow. So 25, when you'd started to have over 300 active current students. That’s really impressive.
So you mentioned that you have hired graduates of the program. How has that experience been? Were you surprised when students, or former students wanted to come back not as students but as faculty?
Mariette: As instructors?
Keith: Yeah, instructors.
Mariette: I think there's a couple of answers. One of the things about disability studies, as I mentioned, is that there are more and more programs coming online in disability studies, but there aren't so many. So if you're hiring faculty, you know, there are some in the bachelor's program, our bachelor's kind of walks a theoretical line between applied and theoretical.
One of the things I was trying to do was to develop a group of faculty who understood what disabilities studies was in a new way, because they'd studied it. Many, you know, many people who were teaching disabilities are, their home discipline isn't disability studies, it's anthropology, sociology, english literature, history.
So those are all valid. So sometimes if you're trying to hire, you know, somebody, you could hire a historian who is interested in disability studies, but often those people are working for other universities they are faculty at those other universities, and they may not want to teach online for us, or they may not have the time to do it or whatever.
So one answer is that I was trying to develop our graduates so that they had expertise in teaching. I sort of see teaching as a practice, right? So it's like a doctor, you're, you never get there. You're practicing every semester and trying to get better at it, and some of them are now enrolled in doctoral programs or some of our graduates have done that, have come back to teach and, and have gone on to get a doctorate, which means that they will have real expertise in disability studies, you know, for the first time.
So part of what I was trying to do was to develop their skills and their expertise and their academic expertise so that if they wanted to go on to a doctorate, they would be able to kind of represent the breadth of disability studies if they wanted to get a job at a university as an academic, you know, as a full-time faculty member or something.
I think that for many of the people that are graduates whom I'm hired, I tried to hire our graduates who also had disabilities of one kind or another, because they brought both of those sensibilities, not only the the knowledge of disability studies in our program, but also their own personal experience, which is really important.
Keith: Absolutely. Yeah I definitely do. So as the program was winding down for me and I was getting closer and closer to graduation, I found myself at a crossroads really having an earlier mid-life crisis because I didn't want to leave the program at all, even though I didn't really want to continue studying. So I developed this concept with a few mentors of mine and originally it was going to be me doing the interviews then writing up the interviews to really state my Creative Writing side. But then I likely remember that very few to no advocates like their story told by anyone but themselves, so I shifted to this format, an interviewee format, and the podcast does not work any other way. So it was an offshoot of me trying to figure out how to continue the work.
Then the Pandemic hit and one of the few bright spots is doing remote interviews via Zoom. I was talking to a friend the other day about the podcast and he said do you just do Zoom interviews and I'm like, I don't think I will ever do an in person interview because Zoom is so accessible to almost anyone in the entire world. So I know I talked to you about this a lot, about why there wasn't a doctorate offshoot of disability studies, because even though I don't fancy or really need a PhD at the end of my name, trust me you have seen my name long enough, pun intended. Nothing else needs to follow that name.
But if there was ever something that I would want a PhD in, particularly when I wrote my masters thesis on masculinity in disability right before I came back from my final year in the program, it would be a PhD in disability studies and the mothership of the PhD is the University of Chicago and the reason why I'm not there is because you really have to like wind. They call Chicago the Wind City for a very good reason, and you also have to like rain. And I don't really like, I mean, I don't mind, but I don't really love those. So, back to the question, What was the struggle that unfortunately could not be overcome to get a PhD offshoot of the disability studies master?
Mariette: So there's a couple of answers to that. One is that as the School of Professional Studies grew, it became more bureaucratic and when I first got to the School of Professional Studies, our Dean, John Moleski, who was just a wonderful person, encouraged us to develop new programs and new ideas, but we also don't have a lot of help to do that. So I kind of was working on these bachelors and so forth as I went along.
And like you, I thought to myself that it would be terrific to be able to offer a PhD in disability studies. And you have to remember that our school is still attached to the graduate center, which has an educational philosophy, which I respect, but which accepts students, and those students are, you know, frequently receive fellowships.
So they're paid to do the doctorate to some extent and that funding is in place for them. In the program I went to, which was a program for adults who were working, none of us had the time to become teaching assistants full time, or, you know, as you would do in a traditional doctorate program, the way it's set up.
So I think initially when I approached the dean with this idea, what he was thinking of was the traditional graduate program and I thought that we have a lot of graduates who might want a doctorate. There are other people in the field who ask me about it all the time, who are working, who would be happy.
You know, we have low tuition anyway, they would be happy to pay for, you know, for the coursework and so forth. But John was always of two minds about whether he wanted to get into offering PhDs. And the politics of CUNY is, most of the doctoral programs with the grad center, there were a few professional doctorates, like one of nursing and that were at different campuses, but initially, a lot of the doctoral program got lost in those kinds of CUNY politics.
Then about three years ago, my boss said, oh, you should dust off that doctorate because maybe we have an opportunity. He was kind of looking for an opportunity to get this through. So I looked at other programs in the country, and there are a few, although University of Illinois, Chicago is the best known.
It's, you know, best well-established as great faculty and so forth. There are a few other programs that call themselves disability studies doctorates, but don't really have any courses in disability or not many of them. Which you can find.
So I did, you know, a spreadsheet for him and said, these are the other programs, this is what they're like and here's the advantage we have. I had designed our programs so that if you were coming in with the bachelor's, you needed to take so many credits. If you were coming in with the master's, you had to take fewer credits, obviously and I made it so that the culminating experience could be a dissertation, a formal research project, or could be a social action project project, because in my experience as a disability advocate, a lot of people are working on things and they're passionately committed to what they're doing, but they're not documenting it.
I thought that it would be really interesting to have a program that documented the kind of social activism that people did for, you know, your for example, your classmate, Carol Liebowitz, who worked at the Independent Living Center who I know was doing demonstrations at the capital and stuff, right?
So all of that was interesting and then as soon as my boss told me to dust this thing off, I did it, I did a little revisions, they got it back to him, and as soon as that happened, the people who would have to approve it at the graduate center, and they got a new dean there. As soon as that happened, they created a task force on graduate education, which has been working for a year and a half, and I don't know what happened with it.
So it kept falling into this kind of bureaucratic politics, you know, educational politics are a killer, right? So these, these places that were killers, but the proposal and the kind of course designs for something like that are there. Hopefully Dr. Mark will be able to have an opportunity to do something with them.
I think it's a pretty sound project. You know, I think that it would be good and I actually think that there are a lot more, you know, whenever I go to, you know, I go to the ahead conference and I'm talking to students, people always ask me about a doctorate. So I think there are a substantial number of people out there who have degrees and related subjects that might like to do it.
So I kept trying to persuade my bosses, but it got stopped at some other bureaucratic level and I wasn't in those conversations. It was my boss who was there. So I don't really know what the objections were, but it's still out there as far as I'm concerned. It's still hanging out there.
Keith: Yeah. Like the paper I just mentioned, my impromptu, very informal, masters thesis, quote unquote on exploring masculinity in disability, I actually had to stop writing that 50 pages in or something because I needed to turn it into the teacher. If ever there was a topic for a PhD thesis that I would very happily go back to to turn into a full thought.
Mariette: Well, I, and I also, I also thought that, you know, it was ideal because it was online.
I mean, if you're in a place like Idaho or Wyoming and you don't wanna move to Chicago you know, what are you gonna do? Because there are people, there are good people working on disability rights and disability justice everywhere you know, and we need good advocates and we need people who understand things, who have the confidence to speak up, which I think, you know, one of the things I wanted to do with our program was to make sure that our graduates had enough confidence in what they knew, so that if they were doing advocacy work, they could articulate, you know, their point of view clearly and think critically about solutions so that they could advance the whole idea of disability rights.
I often think of that, but also other countries, you know, we've had people who are working so hard, you know, we have certainly a long way to go in this country in terms of advancing disability rights. But if you are in another country which has no resources and you're trying to work on these issues, you know, you're really swimming upstream.
So having the ability to have a community, even though it's online, so not face to face, of people who are all thinking about the same thing, is immensely valuable to people in other countries who are, you know, working away sometimes alone, and they're isolated and they don't need to make the same mistakes we did, you know, we can learn from each other and we have low to, you know, our tuition is low enough so people might be able to actually think about it.
So I was thinking about all that. So I'm on the same page, but it just kept getting like nowhere. There were always some reasons they changed. They're doing this taskforce, they're changing deans, they're whatever, you know, the provost is different. So my impression is that somebody didn't wanna do it at some other bureaucratic level, but why? I don't know. And I don't know who it was. So, and I'll never know. But people come and go, you know, so I wanna be hopeful about this because, people come into jobs and they leave them and we could easily find someone who understands disability and thinks it's a good idea.
Keith: Exactly. So, wrapping up, I always like to end on a few questions to really bring the episode full circle. For any inspiring self advocates or advocates in general who are maybe just coming into the professional sphere of wanting to make disability studies, rights, justice, their calling like you did very well in the long esteemed, professional life, what would be like five action steps, or five pieces of advice you would give the advocates of the next professional generation?
Mariette: I think the first one is that humility is really important because in my experience and looking at the field of advocacy over a long period of time, every generation has a group of people who think they invented advocacy and show up with ideas that they think are new and their enthusiasm is really important, but if they take the time to really understand what's been done before, it helps them to cast things in a new way and be able to explain what they need in a way that the recipient can understand.
I think the other thing is that you shouldn't assume that the people you're advocating with are your enemies. Unless they prove that sometimes they're just ignorant.
One of the best advocates that I met was a woman named Henrietta Messier. And then Henrietta Messier had a daughter with Down Syndrome, Sherry, but Henrietta was so respectful of the people she was talking with, and she would bring them along in her argument without anger and with reason.
And she was extraordinarily effective. It's not that I don't think that demonstrations are useful. I've been in a lot of them. I've created some, and sometimes they're really necessary because people aren't paying attention and they need to. But I think it's really important for people who want to be advocates.
Spend some time learning first, and not assuming that they know and even though personal experience is really important, one of the things that I think maybe not unique in the disability field is that everybody has disability in their family. They have a disability themselves. They have a cousin on the Autism spectrum.
They have another cousin who was in Iraq and has a traumatic brain injury. They have an aunt with mental health issues, whatever. I think we tend to take our personal experience and generalize from it, but that's a mistake because everybody is different with a disability and the best policy people can find is common ground between all of these disparate folks and find something that will be helpful that they can advocate for. But it really helps to listen to other people and what their needs are before you assume, you know, and or because you have a disability, you know, what somebody else needs, because what they may need might be completely different and their interests may be different than yours, right?
So I think all that is really, really important. I think the other one is that I wanna say don't leave out people because they can't articulate their needs.
You know, I have a stepson who is now 58 who lives in the community residence, who doesn't speak, who has quite severe intellectual challenges and for whom the self-advocacy associations do nothing.
Pay no attention to him. Pretend he doesn't exist because he's not able to articulate his needs the way others can, and that's not to say he might not have something to say about it, about what his needs are. He will let you know what he wants. You know, when I go to see him, he puts on his coat and pulls my arm cuz he wants to go outside.
I think there's a tendency to just not deal with those folks because they're not the most high functioning, articulate spokespeople for that particular disability, but they're out there and they exist and they're living lives and we should be concerned about everybody. You know, not just the stars in the disability field, right?
The Judy Heumnans and the Keith Murfee-DeConcinis that are out there, but the people who aren't able to articulate their needs, so I guess that's five things. I hope that was helpful.
Keith: Yeah and you are way too kind to put me next to Judy in any aspect whatsoever, but I would like to assume that this podcast reaches both disability advocates and those who have yet to discover their own disabilities. And so the last question is a two parter because the disability advocates listening to this interview are going to hear it a lot different or may hear it a lot different than those people who have yet to discover their own disability sand so as we wrap up this interview I would like to get what you hope that the disability advocates listening to this interview will take away from this interview and what you hope the listeners who are not yet aware of their disabilities would take away from that interview?
Mariette: Well, I think the people who are disability advocates have a unique role to play in this country because there's a tendency to think that disability is a health problem.
It's really important. That disability advocates are able to talk about their experience as a civil rights issue. It's not that people with disabilities and disabled adults or children don't have health issues. Many people do. Right?
But that disability stigma and impression and oppression, which is everywhere, is really a reflection of society's attitudes towards people with disabilities, right? It's in the built environment and the opportunities we give people. So I think that disability advocates who have a greater awareness of these things.
It's not that they have a responsibility to speak up, but people can choose to do that. You know, I think that it's a burden to tell people they have responsibility because they're, you know, have a disability to do that. But a lot of people take that on themselves, and they do have a very, very important role to play in terms of lessening disability stigma, erasing those kinds of attitudes people have about the capabilities of disabled men and women.
So I wanna encourage them to do that because I think it's very difficult emotional work, sometimes, tiring, exhausting to represent all the time, to be the only person in the room that, you know, has a disability and certainly people with other minority identities have articulated that it gets exhausting to be the token right in the room.
So solidarity is important. Finding people that you can communicate with who understand you and understand where you're coming from. Those can be disability allies or they can be other folks with disabilities. And for people who haven't yet discovered their disability, which you know, happens every semester in my class, people say, well, I didn't realize that I have, you know, whatever.
I think that disability is such a broad and deep and interesting subject, that I hope that you are willing to explore as much of this very fascinating part of the human condition is and to discover your own opportunities to advocate, and your own opportunities to lead because they're there.
I know people who've transformed their lives because they have discovered this and discovered that they have a voice and those voices are really, really important. So I think that's what I wanna say.
Keith: Well, thank you for everything you've shared and the depth of knowledge that you've brought not only to my life, but to everyone's life to have gone through the program.
And we didn't talk about the offshoot of the masters in disability services which is a whole other discussion. I have learned alot about you that I didn't know and would never know had I not really asked the questions about your past and I cannot thank you enough for the work you've done and for the impact that you've had on my life and my advocacy, and I hope you will come back again for another interview.
Mariette: Sure I'd be happy to, because it was such fun talking to you.
Keith: Thank you. Thank you. Stay safe and healthy my friend. Bye.
Mariette: Back at you.
Keith: You have been listening to Disability Empowerment Now. I would like to thank my guest today and you, the listener. More information about the podcast can be found on visit on disabilityempowermentnow.com. The podcast is available wherever you listen to podcasts or on the official website. This episode of Disability Empowerment Now is copyrighted 2022.