TRANSCRIPTION OF THE EPISODE “Mark Gordon on the Friends and Relationships Course: Teaching and learning from people with intellectual disabilities about sexuality, interdependence, and inclusion”

TRANSCRIPTION OF THE EPISODE “Mark Gordon on the Friends and Relationships Course: Teaching and learning from people with intellectual disabilities about sexuality, interdependence, and inclusion”

Jon M: 00:15 Hi, I’m Jon Moscow.

Amy H-L: 00:17 And I’m Amy Halpern-Laff. Welcome to the Ethical Schools podcast where we talk about how to create equitable and inclusive learning environments that support students in becoming capable of and committed to creating a more ethical world. Today we’re going to talk about an educational setting primarily for adults with intellectual disabilities, but as usual we’re looking at the program through an ethical lens.

Jon M: 00:48 Mark Gordon, based in Santa Fe, New Mexico, is the founder and director of the Friends and Relationships course, which serves people with intellectual disabilities and their support people. In over 15 years, more than 1500 people have taken the course, including a number who have taken it more than once. I should add that this conversation includes some frank discussion of sexual activity, and some names have been changed for privacy. Welcome, Mark. Can you tell us briefly what the goal of the Friends and Relationships course is, how it works, and why the State of New Mexico supports it?

Mark G: 01:21 Yeah. Well, the State of New Mexico does support it. The Friends and Relationships course is a socialization and sexuality education program that began in response to the need in the state to support people with intellectual disabilities to be able to form and maintain friendships and relationships. So it’s designed to train the people who provide support as well as the people with intellectual disabilities to work together, interdependently, to achieve full inclusion and integration of the people with intellectual disabilities as community members. And there are as many support people in the classes as there are students. So they are learning all the time how to continue providing those services in between classes.

Jon M: 02:13 And the State was motivated to do this, as I understand it, because there was a lawsuit that when they were breaking up institutions, large institutions for people with developmental disabilities and people were going into the community, that they were not providing sexuality and relationship education, and that they had to respond to the lawsuit. Is that accurate?

Mark G: 02:35 Actually, where they discovered there was a need for it is that the courts were filling up with people who were being accused of being sexual offenders, and cases where people were being abused and they knew that this was not a group that needed to be in the courts, but that people who did need to have education. And that they did not have the education to be able to handle their sexual needs.

Jon M: 03:07 But was there also a lawsuit?

Mark G: 03:10 Yeah, the lawsuit is what made that possible. What happened was that the plaintiffs said, wait a minute. You have to provide support for people to have relationships that could lead to marriage and more jobs. Those were the two things that got that going. And the person who started the whole program was handling sexual offenders and said that if you’re going to do things for sexual offenders, then what you need to do is provide education. And that’s where this program came in.

Amy H-L: 03:46 Mark, in preparation for this conversation, you shared a quote with us from, I believe it’s Chris Heimerl that says, “So much of our thought, time, and energy are devoted to people’s extraordinary needs arising due to impairment and disability that we neglect or overlook ordinary needs, those things we all want in our lives that are sometimes extraordinarily hard to get.” So it sounds as though much of the program is based on helping people with intellectual disabilities meet these ordinary needs. Is that so?

Mark G: 04:26 Yes, it is. And I think that the word extraordinary kind of means that, you know, they won the Super Bowl or they’re, that being extraordinary really means like out of the ordinary that they have out of the ordinary needs, which means they need to be dependent, they needed to be in institutions and they can’t be out on the street because they are flawed and they have special needs that need to be taken care of. The truth is that what people really need is they need support to be part of the community and they need advocacy to be part of the community rather than be fixed. And that’s what, that’s what it would mean to provide ordinary needs instead of out of the ordinary needs. And it’s pronounced Chris Heimerl.

Jon M: 05:15 And who is he?

Mark G: 05:17 Oh, he’s a contractor with the State of New Mexico to handle problems that come up that nobody else can figure out how to solve them.

Jon M: 05:28 And it sounds as though he does that pretty well. You’ve talked about interdependency rather than either dependency or independence. What does that mean?

Mark G: 05:38 When we just talked about out of the ordinary needs, people who are being treated in institutions for things where they need remedial help or flaws that need to be fixed for them to move up to the category of somebody who qualifies to be part of the community, that would be a very dependent role that people would have. What it means in terms of if you want them to be part of the rest of the community, that would take interdependence. My son who uses waivers, DD waiver services, that’s the state funding, he has Down syndrome. He asked me one time, “How am I going to get the big world of my future in my hand?” And that seemed to be a question that really lent itself well to interdependence.

Mark G: 06:32 I’d have to go, “I don’t know. We’re going to really have to work at that because it’s not just on you and it’s not just on me and it doesn’t have to do with you lacking anything because you’re brilliant. You’re great. And it’s up to me to work with you to make that happen.” And that’s what interdependence is, both people, both people realizing that they have a job to do. Now I can give you an example of that. Um, since we’re talking about a sexuality program, something came up where he and his girlfriend were being sexual with each other and I wondered if it was okay for me to, how would I supervise that? Because I didn’t think to just let them just be alone and figure out whatever they wanted to do. So I was very uncomfortable and didn’t know what to do exactly. So I said, “How about if I come in every 15 minutes and just check and make sure the two of you are doing okay.” They had already agreed that they were going to keep their clothes on. Um, so at one point his girlfriend started to scream and I came in in a big hurry and I said, “What’s, what’s going on?” She said, “I don’t know.” And I said, “Do you wish your parents were here?” She said, “Yes, “and then, “How are you doing, Colin?” And he said, “I don’t know. I thought she liked me.” And I said, “Well, sometimes when couples are being sexual with each other, they get confused and get upset with what’s going on. What they do is they get up and they make lunch.” So they got up. We all went and made lunch. About a month later, his girlfriend’s mother asked me, she said to me that she was worried that, that, that his girlfriend, Betty was worried that Colin was going to grab her by the arm, tear clothes off and have sex with her. What I did is I got the two of them together and said, this is what came up. “Colin, would you ever do that?” “No.” “Have you ever done that?” “No.” And then I asked Betty. “Has he ever done that to you?” “No.” I said, “Okay. I think that we can say that, that it’s really fair that you have that worry. And so what I think we should do is make a list of things that are okay. Okay, let’s start with grabbing you by the wrist. Not okay. Okay. Tearing your clothes off. Not okay. Having sex if you… Not okay. And so then they proceeded to make a list of what would be okay. And they came up with that it’s okay for her to be on top of him, but not for him to be on top of her, that they could lick legs. And those are just two of the things. And there was a set of things. And then they were able to go back to being alone in the room with some supervision. And to me what that showed was that I didn’t know what I was doing, they didn’t know what they were doing, but together we reached something where we both had to contribute or I didn’t make them dependent, set rules on them. I didn’t say, I’m going to just leave it alone because I’m a little worried about if I get involved or anything. So we both got involved and that’s what made it interdependent.

Jon M: 10:04 And your role, in fact, it sounds like was that of a facilitator, that you were facilitating, um, two way communication where they were expressing themselves and each listening to the other.

Mark G: 10:19 Actually I wasn’t facilitating, I was a member in that, because I didn’t know exactly what to do when they agreed, we agreed that that was a justifiable fear that she had, that something could happen. That’s when I got, okay, it’s time to set it up so that they don’t have to do that. I didn’t know what I was doing. If I was facilitating, that would mean that I was in charge and I did my role, but they each had their roles, too. I was an active member. A facilitator is outside the process, usually helping it happen. And yes, I facilitated for the two of them to do that activity. But the whole thing, I was not a facilitator of. Now at a certain point, when I first met Colin, he was doing laundry and he was washing it. Then when wash cycle ended, he put it in the dryer and dried it and took it out of the dryer when he was done, put it in the washing machine and started the washing machine again. And then when that was done, he put it in the dryer, took it out of the dryer and it could have gone on like that forever. I stopped him and said, “let’s talk about what you do next cause I want to help you with folding clothes and putting it in drawers, too. You miss that part.” And he was upset with me for interfering with him. He had lived there his whole life. I had just moved in with him and his mother and uh, why was I telling him what to do and he thought of me, he said that he thinks I’m a slave driver and a prison guard. And so we had to work through that where he had me as somebody who was trying to control him and making him dependent. So he decided he would be independent and do the laundry himself without having me butt in. So how do we get to interdependence? About a year or two later, I said, “Okay, let me help you with that because…” And it was something different than that, but I don’t remember. So we say if we got to move to the step of where you fold the clothes and put it in the drawers, he said to me, “How do you know that stuff?” And I don’t, which seemed to be really his working towards interdependence, working towards how can I get to where I know that stuff and uh, you know, and really relating to me, not just in this role, but trying to work it out with me.

Amy H-L: 12:57 That’s really a key question, it seems to me. “How do you know this stuff?” And I don’t, I mean, that must be a question that a lot of adults with intellectual disabilities ask.

Mark G: 13:11 Everybody, everybody asks that. And they also ask, “how do I get the big world of my future in my hand?” They also ask that, I mean, this is where I learned almost everything that I know about how to start the classes, about how to develop the curriculum. And the way that I developed the curriculum was to have, we’ll get into what the curriculum actually is, but to have people come up with their own instances of when they had problems, when they wanted to do things to fit in, and get those down on paper and use those as a springboard for more lessons. So pretty much at this point, after 15 years, the curriculum, you know, I worked with the scissors, not a pen, to take what they had said and put it into making lessons out of their situations.

Jon M: 14:07 You’ve talked about the influence that Herb Lovett’s book, “Learning to Listen” has had on you. How would you describe that influence? What is Lovett saying?

Mark G: 14:17 Herb Lovett was way back in the 60s and so this all preceded anything that happened with the lawsuit that happened. He had things to say that what we’re doing is instead of finding what people are not, we need to find out who they are. So that lent itself to, you don’t go in there and be the facilitator. You don’t go in there and be the person who is the social worker, the doctor, who’s going to help them fix what’s wrong with them. You try and find out who they are and he came up with the question that what we’ve been doing is saying what is wrong with you that you can’t be a participating member of society is what we’ve been saying. “What is wrong with you that you can’t be a fully participating member of society?” versus “how have we kept you out?” So in the situation with the laundry, it’s how have I kept Colin out? Clearly, if I’m coming at him in a way that makes him think I’m a prison guard and a slave driver, that I have not figured out how to relate to him in such a way that he feels like he can work with me and then I don’t get to do my job of seeing how have we kept you out. Um, another thing is that oppressed people are supposed to stay where… neither confront nor challenge a system that regards them as less than fully human. That means that my job is to not keep them hidden, but to get them out in the open, and ways that I feel like I’ve worked to get people out in the open is to actually help them find things to do in the community. Not just that, but by making the curriculum to be made up of their own experiences. Then it becomes clear that these are not just people who I am trying to teach how to do something with, but that I am working with them to find their voices and be able to talk about ways in which they feel oppressed.

Amy H-L: 16:31 So does that mean, Mark, that each semester or term the curriculum is kind of reinvented to help the particular students who are there?

Mark G: 16:44 What it means is that the curriculum keeps building. There’s only about, well you know, three major strands in the curriculum that we, that we work with. One is numbers one and two have to do with helping people expand their social world, having them expand the variety. So people who I teach, generally the only people who are in their social network are family and staff, the people who support them, paid support people. And what we’re trying to do is help them have relationships with people who could be friends and be able to speak up in community settings, like asking where the eggs are in the grocery store, or I’m talking to people in line at the movie theater and being able to carry on conversations and also get out and do things with people socially, which most people with disabilities haven’t been able to do. They’ve been taken as a group to bowling or taken as a group to a movie, where they get their choice of which Disney movie they want to watch. Instead we help people work, be one on one with each other to make plans to do things and put a lot of energy into that.

Jon M: 18:05 I have a question about, I mean, what you’ve been describing is incredibly powerful. How do you see, and you’ve talked about it a lot in terms of what you’ve been able to come to understand about not being a facilitator, but being a part of the process. How do you integrate this into the agency system where people spend much of their day in agencies. What would help the agencies begin or even if they’re already doing it, to continue to function in the kind of ways that you’d like to see happen?

Mark G: 18:42 I’ve believed for a number of years that in order for this program to succeed, it has to be in the agency systems. Now, ultimately that’s not the goal. It’s just that we have a reality where people are being supported through agencies. And we have to accept that reality for right now. There’s a contradiction there in that reality that people are not getting that kind of support as much as they could. For us to go be in as part of the agency, then that would mean that people would be able to practice these things on an ongoing basis. It’s also financially the best way to make it work. So it just works. Given that reality, it’s something I’ve worked toward and had to drop out of that now and come from another angle to try and make that happen.

Jon M: 19:42 So in the end, does, are you saying that the State, or states in general, need to look at their financing systems in order to be a part of this, to help change the system of what happens on sort of a large scale?

Mark G: 19:56 Well, on a large scale, I don’t really have the answers to that on a large scale. I have to accept that this is what we have, a disability system that provides funding for people with developmental disabilities to move beyond just having a presence in the community, which means that they are living in houses around the community and have them be fully participating in the community. So that’s the next step. It’s a miracle that we got as far as we got, that we got them out of the institutions. It’s still funded for them to be able to do this. And this program is designed to move to the next stage, where people are fully participating. And at that point it won’t be a question of more funding in a different way from the State. It might be that we don’t need the State to do it cause people would be included, they’d have more overpasses for people to cross streets with. And, you know, other things in society where society is accepting them. Getting back to the stuff of Herb Lovett. He is saying that in the system we have right now that the real disability is, is that there are no streets that they can cross rather than the disability is that they are incapable of judging how fast or how far away a car is. You know, the disability is on our end of it, and that’s something that was, that was put out by Sunny Taylor and you can look her up and that’s what you’ll find. Sunny Taylor wrote an article in Monthly Review talking about how the impairment is Down syndrome, autism or some disability or something where you need a wheelchair. The disability is what we as a society are doing to keep people from being included.

Amy H-L: 21:58 That dovetails with a concept that we talk about a lot, which is the universe of obligation. So as a society and as communities, whom we include, to whom we are obligated. And I think adults with intellectual disabilities are marginalized or inferiorized in the ways that other groups are in our societies. And, and clearly we need to have culture shift and institutional change to make that different. Is political advocacy part of what you do?

Mark G: 22:39 I would say I’d like to think that it is. I like to think that what I’m doing is working on having there be social change and that the work I’m doing right there with students right there with Colin, it works towards social change. I don’t, you know, I still would like to get out there and do more. I don’t want to say that I’m doing enough or as much as I would want to do, but I do see this as working for social change.

Jon M: 23:10 Well, I want to thank you and sort of in conclusion, I know you’ve also been influenced by James and Grace Lee Boggs and you mentioned a quote from them. “As human beings, we are free when we are confident of our relationship to the world and are not fearful of it.” And it seems to me that of course there are lots of definitions of freedom, but that sounds a lot like a definition of an ethical society.

Mark G: 23:37 Yeah. The quote that where they’re saying, “as human beings we are free when we are confident in our relationship, the world we live in and are not fearful of it.” The other end of that is many people that were coming to find out that freedom does not mean I have enough money or I have enough in my retirement account that they can’t touch no matter what they do that I can buy an island, or if you can’t buy an island, that feeling like individual freedom is a thing that has not worked and that being confident in our relation to the world that we live in are not and are not fearful with it. Think about people who are transgender, how much they’re afraid to walk down the street or women are afraid to walk down the street after it gets dark. That is all lack of freedom. So freedom would be when we’re all in a community and that we’re resolving problems that we have specifically with what we’re talking about, about the classes is that people sometimes ignore the reality that they need to be working in relation to people who support them and then in relation to people who are, um, well let me read this by Courtney Martin. “We need to surround ourselves with others who will agree to take care of each other, who are impatient, innovative people who are actively figuring out how to reclaim community. We are now sowing communal seeds, dismantling the white picket fence and building something more interdependent in their stead.” People with developmental disabilities, if they look in their future thinking that they’re going to be able to buy a house, get married and live independently with somebody, which is their dream, of the dream of most people who I work with. Then they can’t just imagine that they’re going to do that on their own. That they’re going to break away from these people who are support people who are keeping them dependent and be able to do that independently. They’re going to have to take up that challenge also of we are confident of our relations with others and that freedom is a relationship to others based on interrelationships, which are part of our reality, rather than on the illusion of isolated and internal freedom. So there’s what you were asking about, Amy, about how do I see this as part of a new ethical way of looking at things that for people with developmental disabilities, the challenge is to get to, for me, has been to get to where I got with Colin and his girlfriend with, let me be a part of this rather than lay down the law and say, “Okay, this is too dangerous. We’re going to break this relationship off. Kids these days. I don’t know what do you do with them” and ignore it.

Amy H-L: 26:51 Thank you so much, Mark Gordon, and thank you for tuning in. You can visit our website at ethicalschools.org to check out our articles and episodes and to subscribe to our podcast and newsletter. We’re also on Twitter @ethicalschools. Till next week.

Listen to the episode: https://ethicalschools.org/2019/05/mark-gordon-on-the-friends-and-relationships-course-teaching-and-learning-from-people-with-intellectual-disabilities-about-sexuality-interdependence-and-inclusion/