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Transcript for "Perspectives: A Conversation with Harilyn Rousso"

May 15, 2009

Speakers: Harilyn Rousso, Ken Struve


Ken Struve

We're here today with Harilyn Rousso, artist and educator and activist on behalf of women and girls with disabilities. Thank you for talking with us Harilyn. I want to ask you about your work as an advocate for women and girls with disabilities. It's very close to your heart and if you could just tell us a little bit about that, it's a great place to start.

Harilyn Rousso

Well, I got into it in a rather circuitous route. I was born — I should say I have cerebral palsy, I was born with it. And I grew up — I must confess I am in my 60's, I grew up in the 50's and 60's.

And at that time, mainstreaming and inclusion in education didn't exist. So I grew up — I had a very pushy mother who pushed me into the public schools. But at that time, I was really virtually one of the few, if not the only child with a disability in my school. There were very few people with disabilities in my neighborhood or my community. So I really grew up feeling like the only one with a disability. I was very invested in being the only one, because I internalized this stigma of disability and I knew that I was sort of... You were wanting to pass, not wanting to be out there, and not wanting to find other people with disabilities. I wanted to be sort of "like everyone else". I was vested in that kind of thing. So I went along my merry way, trying not to pay too much attention to my disability differences, being part of the larger society.

Ken

Where was this?

Harilyn

I grew up in Queens. Born in Brooklyn, but grew up in Queens. And now I live in Manhattan. I am a true New Yorker.

So I went to college and then I went to Washington, D.C. after college, working. And I got involved in — this is the circuitous answer. I got involved in a women's consciousness raising group. This was the early 1970's and the women's movement was really underway then. One of the mechanisms was women's consciousness raising groups. And a friend of mine in Washington dragged me to an organizing meeting of consciousness raising groups. And I felt like I might not be accepted there. I think, although I was into passing and denying, I knew that I had a difference and I was in touch with that. And I never really felt very womanly, because women, my image of women was physical perfection. I mean, every woman's misconception is that to be a woman you have to look a certain way. But when you have a disability it gets — that fantasy gets compounded further.

Nevertheless, my friend dragged me there to the group and I joined the women's consciousness raising group. And I was the only visibly disabled woman in a large network of women, and we formed groups based on where we lived. So I was thrown together with maybe ten women, and we started meeting and I was fearful as I slowly started talking about how I didn't feel very womanly and how I felt different and how I disliked certain parts of my body.

And we literally went around the room and every woman in the group could tell me the same story, that they didn't like their breasts or they didn't like their waist, or their hips were too big or they weren't pretty enough. I mean it was such a persistent theme that I had this great insight. Aha! This self-loathing about my body and about my womanhood is not just a disability issue, it is a women's issue. So it really created for me a sense of being a woman, being included in the women's community really made me re-think about the way I thought about my disability. I mean I don't think we've advanced to the point where women and girls are free of that obsession with beauty. But hopefully the women's movement has made it more, made women more capable of challenging the notion of what it means to be a woman. Such a narrow definition we used to have, and for teenagers in the thick of it who face the issues of fitting in and not wanting to be different, I think it's still a struggle.

Ken

So you had this recognition.

Harilyn

I had this recognition in this group and it was instrumental in my life. The other thing was that I was taking on a bit of a counseling role in this group. I mean, everyone counseled everyone in the group, that was the nature of consciousness raising, how to be supportive and listening to each other.

But I had always had a desire to be a psychotherapist or a counselor. I feared that no one would hire me or I wouldn't be accepted. And in this group all the women often commented on what a good listener I was and how I understood. So it gave me the confidence to begin to pursue a career. In college, I had majored in economics.

Ken

The dismal science…

Harilyn

Well, when I was in college there were virtually no women in economics. And that's changed now, but this was in the 60's and a lot of my class at Brandeis — I went to Brandeis University. First of all, economics was not such a hot topic then as it is now.
And women in the class were relatively few. It was not considered a "women's profession".

Ken

Why did you pick economics? Because you were interested in it, or was it something else?

Harilyn

Well, I think it was a combination. I was always better in math than I was in English. [I had an interest in math. Actually, I started college as a math major and that lasted about two days. And then I thought, oh I cannot do this. So I moved on to economics. You know, I think maybe in part I chose it because I felt like I could not get into a more womanly profession.

I felt different and here I was choosing a field that didn't demand in my mind what womanly characteristics one needs for teaching or social work. I mean, you have to realize that in those times, jobs were a little more sex stereotyped. So, I think that was part of what attracted me to it. Also, I enjoyed thinking analytically. More so than writing creatively or reading literature and interpreting it. I liked things that were a little more analytical and mathematical, so I found my way to economics.

Ken

Nowadays you seem to be much more involved in the humanities.

Harilyn

Yes, that's right. Exactly.

Ken

Painting and writing and the like.

Harilyn

I've probably, even as a child, might have been more interested in that, if I thought I could succeed. I think that my image of myself was that I couldn't do those kinds of things. I mean it's something strange because in a way my family never imposed limits on me, they always encouraged me to achieve whatever I wanted to. But you can't grow up in our society not internalizing limits that society imposes around disability. So I'm sure I took them in. When you're a woman with a disability, then you get a double set of stereotypes that limit you further.

Ken

So you attended this group and saw the commonalities between being a woman and a person with a disability in our society. This motivated you to do….

Harilyn

Well after the group, first of all it made me a feminist and raised my consciousness and I got involved in feminism. I often say I got into the women's movement long before I got into the disability movement. It was a political awakening. And then as the result of the support of the group, I decided in fact to become a therapist. So I went to social work school with an image in mind to eventually have some kind of private practice. I don't know what image I had. But I wanted to do counseling and therapy. And social work was one way to do it. It required fewer years of training then, for example, psychology. Social work school was two years. Usually, when you want to become a therapist, particularly if you want to go into private practice or beyond that, you can go to something called the Training Institute. It's like for psychotherapy or psychoanalysis or whatever.

In New York City there are a zillion therapists. There're probably more therapists in New York City than in the universe. So I thought I had to be a specialist. I had to figure out some kind of specialty. So I thought, I have a disability, well I should specialize in people with disabilities.

It was such a grandiose notion. I mean, but there it was. Grandiose in the sense that here was a woman, a young woman who had passed or denied or failed to take account of her disability most of her life until then. Now I had this notion I was going to counsel people who were struggling with disability issues. Therapist, heal yourself!.

It was a grandiose notion, but it led me in a wonderful way in the sense that I never knew any disabled people until that point. You know, I literally… When I graduated college, one summer I worked for a woman who had cerebral palsy, totally accidentally.

Ken

That's the third time you've said something to the effect that you're the only person there [with a disability]…

Harilyn
Yes.

Ken

Whether it was in school or whether it was in the group….

Harilyn
Yes.

Ken

And now you're saying that you hadn't met another person [with a disability]..?

Harilyn
Not another.

Ken

Where were these people with disabilities?

Harilyn

Well, you know, in my day, in terms of education, they were more in segregated schools or on home instruction. In college, Brandeis, which is where I went, was not a terribly accessible campus. Those were before the days of ADA, or even 504, or any of those laws, so I'm sure there were some who had invisible disabilities or more limited disabilities.

I should correct myself to knowing one professor there who had polio. Though he walked with the crutches and had braces…this is such a funny story….because he was so into denial, too. So we would see each other and we would smile, but it was so we didn't want to identify with each other or relate to each other, and his name was Irving Zola, and he became a very well known disability activist later. He helped to form something called the Society for Disability Studies. And in later years, we would meet and laugh at how both of us would so minimize the reality of our disabilities.

He would tell me he took pride in the fact that he accepted a parking space many, many blocks away from his office to prove that he could do it, that he could get to his office himself. And I too would have never, it did not occur to me to ask for any kind of accommodations in college. Not that I necessarily needed any, but had I, I wouldn't have had the courage to ask, because then I would have been out of the closet. And the same for him.

You know, "I was out the closet," and so was he to the rest of the world. But it's one thing for people to see you having a disability; it's another for them to see you asking for help, asking for accommodations. I mean it's a different kind of statement. It's a further statement about what the disability means for you and for them. So, neither of us did it. I had met him, but we really didn't relate much.

As I said, my first job after college for the summer, totally coincidentally, the woman who hired me happened to have cerebral palsy. You could imagine my shock going into the job interview. I had no idea she had a disability. I had never related to people with disabilities and there she was. So, it was a little bit like looking in the mirror and you know… It was actually a great experience because I learned she was an antitrust economist and I learned a lot about women in men's fields and how they could succeed. And I learned she had a husband and she had a life.

So, she was a great teacher for me. And she sometimes said that I was a great teacher for her because she had lived her life in the closet, never talking about her disability. So, not so much then, but in later years, we remained friends and had many conversations [about being disabled]. But in terms of my plan to become a psychotherapist for people with disabilities, I knew few disabled people so I had to get out there and find out who was going to make referrals to me,

Ken

This is 1975, 1980?

Harilyn

Yeah, it was actually in the middle 70's. And it was so lucky for me because there was a lot going on in New York City in terms of disability rights, I mean, Disabled in Action was going strong. And CIDNY had just been — the Center for Independence of the Disabled of New York — had just been formed a few years ago. So a lot of exciting activism was alive and well right at that time. So I kept thrashing around looking for disabled people and contacts, I met people like Frida Zames from Disabled in Action and Carol Ann Roberson, who was then working for the Rusk Institute. And I met Simi Linton. So I met a lot of interesting people. And actually that whole process was glorious, because I had the chance to meet people with disabilities who were really interesting, attractive, smart, all of the things I feared that people with disabilities could not be, so those stereotypes got wiped out fairly quickly.

So that was a great experience, another awakening kind of experience.

Ken

Did you actually begin a practice as a psychotherapist? It sounds like you might have gotten detoured.

Harilyn

Well, I did and I didn't. I did and I didn't. I was in a, I went to one of these training — at the last moment I decided I needed to do this — so I went to a training institute and I had a very bad experience there. I was there about a year and I was doing very well in the courses, but there was also an internship. You know, you had to see patients in their clinic. And a few, several of my patients left treatment with me. And they [the staff] concluded that my disability was too traumatic for patients to handle, and they asked me to leave.

They eventually threw me out. This is true though, patients did leave, it was not their imagination. But to make that connection to disability, I mean I was probably very anxious at that time… Who knows? And it's also true that first year students lose a lot of patients. So it's not totally unusual. But they had been nervous about me right from the first day. When they interviewed me to come in, my disability immediately came up. I was so naïve, I really didn't expect it. You know, I had gotten through so much of my academic life succeeding and never having my disability be a barrier that I thought that their questions about my disability were silly or irrelevant.

So I said, "Would you say that about race, if you had an African American applicant? Would you say that that was going to be a barrier?" So I kept making these arguments, not paying enough attention to their real concerns. So, eventually it came to a head and they asked me to leave and during this process, I had self-doubts. I thought, well maybe it's true. It sort of evoked those old fears I had, which had stopped me from becoming a therapist to start with. And so I began to look for other therapists with disabilities to find out what their experiences were, you know.

Ken

Did you find them?

Harilyn

Yeah. One led to another, and led to another and not surprisingly, although it surprised me at the time, many of them had problems. They either got thrown out of school, or were not admitted to school, to training institutes. They faced many barriers. I was not alone in the discrimination, which was really what it was at that time.

Ken

I'm curious, their clientele, did they run the spectrum?

Harilyn

The whole spectrum; [not just people with disabilities]. So actually I formed a group of therapists with disabilities, and we had a conference dealing with the issues of therapists with disabilities. That was my first serious organizing experience. I got caught up in this experience of meeting all these people, and I loved that part of organizing, bringing together and making things happen.

Ken

Does this association still exist? Was it just a one time event?

Harilyn

Well, it lasted for a few years; I suspect in part it didn't continue because I assumed too much leadership. I've since learned a lot about the importance of distributing responsibility and had I done that, maybe it still would exist. I ran my course with the group, with the organization. I'm sure others could have used it and found it helpful to continue, but I dropped the ball on it. And I didn't have anyone who was ready to pick it up. So then it existed for a few years: we had our conference and we got some publicity and then it sort of disappeared.

Ken

We're proceeding chronologically. So the next year I suspect you made a transition from psychotherapy to something that might be better described as advocacy? Is that what you're saying?

Harilyn

Well, yes and no. I never totally gave up psychotherapy. I went to another training institute. I finished that. I got my certificate and I did start a private practice. I had also been working as a social worker/psychotherapist at a mental health center. At some point, I had had enough of working in organizations, social worker organizations. I had a fantasy, I guess, that I was going to build up my private practice so I could pay my bills.

Ken

Difficult to do.

Harilyn

Yeah. Difficult to do.

Ken

Because there may be more therapists in New York City than there are patients.

Harilyn

Right. I mean it usually takes a lot of marketing, you have to have a business component to get it together. And I did some marketing, but selling myself has never been a strong point. At that time, when I started making the transition, I was working in an agency with a woman who became a very good friend. Her name was Linda Nessel, and she, she happened to work at the YWCA. And at that time I was still involved in women's issues and I was noticing how little disabled women got attention within the women's movement. And once again — this was in the 70's and the early 80's — and disabled women were pretty invisible.

Ken

I remember Bell Hooks saying something of the same about African American women…

Harilyn

Absolutely.

Ken

…and the women's movement.

Harilyn

It started out much more homogenous with white middle class women, although fortunately over the years it has become more diverse. I got interested in how to integrate disabled women into the women's movement. My friend Linda who I was working with, who worked at the YWCA of New York City, she said, "Well, why don't you think of a project you could do about disabled women for the 'Y' and we'll cook it up together. "

I didn't quite know what to cook up, so we kept talking and talking and she was very interested. I was very much remembering my adolescent experiences of isolation and being the only one with a disability and needing to put aside that part of myself. So we came up with this idea of a mentoring project for adolescent girls with disabilities. My vision was — I knew nothing about program development I had no idea what I was getting into — my first vision was [to get] everyone involved, you know. But little by little, eventually, it turned into a project for girls with physical disabilities. And probably it was a good thing because that's the group I knew best. It was not easy to recruit girls for this project.

Ken

How did you do that?

Harilyn

With great difficulty. In those years, schools were less mainstreamed than they are today. So you could identify a few girls, a few schools that were accessible, that had classes for students with disabilities. And so that's what I did, I went to a number of schools that had programs for students with disabilities. Often when you go and talk, the teachers are not too eager to have me shoo away the boys so I could talk to the girls. So I would go in there and do my spiel to a co-ed group of students. And the girls at first were not too happy about it. They were not interested for a number of reasons. I mean, I'm sure if I were a student in that class, I would have been under the desk, you know.

Ken

It's like someone is throwing a spotlight on them.

Harilyn

Yes. Yes. Right. I'm throwing a spotlight on some characteristics that…when you're in your teenage years you want to minimize your differences, and what I was focusing on were what they perceived as a negative. They didn't know about disability pride or the positive, disability as an asset. I was obviously just learning that stuff too. It's not that I was light years ahead of them either.

But I was a little ahead of them. And also, the girls were not too eager for a program only for girls. They were eager to flirt with and meet boys — you know how it is. So it was a big sale job, believe me. It's so funny. Some of the boys were more interested in the program than the girls. In part because they knew about networks, you know. This was the program where I was going to bring where women with disabilities with girls with disabilities to create networks. And they, the boys, already understood that, the way to make it in the world was to network, they had that concept. And they were, a little more career minded than the girls. I mean, you know, boys have always been more socialized to realize that they were going to work than girls. And to some degree, still today, girls have the notion of marriage and children and family more than careers. So it was enlightening for me to see how hard it was to recruit these young women.

Ken

Where are we now, about 1985 or 1990?

Harilyn

Well I started the program in '84. Again, it was before the ADA. PL 94-142, the Education Act [now called IDEA] was already there, but it was only there for a few years. And so there was still a lot of segregated education.

Ken

I'm curious about kind of a nuts and bolts issue. How did the girls that you worked so hard to recruit, how did they get to your program? How did they get from their homes to your program?

Harilyn

Oh, it was a nightmare. It was a nightmare. I remember, first of all we had very overprotective parents who were used to having their kids, their daughters, travel to school on a bus, take them home and that was it. So, for them to go to a program after school hours or on the weekend was — it made them very nervous, very nervous. And of course, there was no Access-A-Ride then, there was no nothing. The only thing you had was vans or some accessible van.

Ken

Accessible vans that the program would have to put out in the field to pick people up?

Harilyn

No. They existed out there, but you'd have to hire them. And they were very costly, I mean it was like $50 each way and so we spent a lot of funds on transportation, but there was no other way to do it.

Ken

Without spending all of that money on transportation, the program couldn't have happened.

Harilyn

That's right. Because the girls, there were no accessible buses or subways at that time. Perhaps a few of the girls used the subway depending on their disability, but most, even if they physically could, their parents were not going to let them go. Many of these were young women from poor neighborhoods. Safety was a real factor. I have such a strong memory of going to this young woman's house, trying to coax her mother to let her daughter to come to my program, and she said, the mother said, "My son was shot dead on the street. I'm not letting my daughter out of this house."

For her, for sure, it was clear to me, you need to pick her up and you need to deliver her. And although that was a more dramatic case, there were real safety issues out there and parental overprotection was another factor, particularly for girls. There are a lot of fears. But you're right, without transportation the project would never have gotten off the ground.

Ken

I ask, because I think it's still true today for many programs that work with youth with disabilities. You need to have that as part of the mix and the costs. Otherwise, it just won't work.

Harilyn

And Access-A-Ride, as you know, is not very reliable. Adults can barely stand it. When you get young people who are dependent on it, forget it.

Ken

It's terrible.

Harilyn

Forget it.

Ken

We'll go on the record with that.

Harilyn

(laughing) Yeah, right, we will.

Ken

So you started a program that I think was called the Networking Project for Girls with Disabilities?

Harilyn

Well, the Networking Project for Women and Girl with Disabilities.

Ken

And the mentoring was the heart of the matter.

Harilyn

That's right. The mentoring was the heart of the matter, but not in a way that I originally had conceived it, although I hadn't conceived it well. The best way to start a new program is to just jump in, because if you know too much, you never do it. So I didn't really have a mental image, except that I knew mentoring programs, like Big Sister, Big Brother, I mean, and that was my model. And it was one-to-one matching. This is what I envisioned.

But in truth, that was the less important part of the program than more group kinds of sessions where the girls would meet with women who had disabilities. We did use some one-to-one matching, but it was trickier and more complex, and you know, we may have an image that adults can mentor because they have life experience. But truthfully, mentoring is a very complex process, and you need to both screen the women and train them and train the girls. There's a lot involved.

I had a sinking feeling once. I went to Big Sisters once to learn more about how they operate, and the woman said she invites 100 women to her meeting, and then at the end, after all the screening, she's lucky if she has ten who are suitable to become mentors. Here I was, I had recruited whoever I could drag in to come, although truthfully, many of my activist friends were eager because they remembered their own isolation, so they wanted to take on that role… Although I had recruited whoever I could find, I just dragged them in here and I said — I assumed none of them were mass murderers. (laughing) But you know, I never screened any. So, I suppose that was another advantage of the group process, you have more of a sense over time, you get to know who is best suited for one-to-one time experience.

Ken

And as you're talking, I'm reminded that this is before the age of computers. And before the age of social networking and this may have been the only opportunity for girls with physical disabilities to get together with each other — in a room at the YWCA. They couldn't get on Facebook to do it.

Harilyn

And not only with the girls. The women, too. I remember, we kicked off this event, first with a conference for women and then a conference for women and girls. At the conference for women, there were women there who had survived the way I had — initially, being the only one — they were mainstreamed. They would never ask for any accommodation in their life, and they knew no other disabled people. They were it. And so, they came to this group, and first of all, when you're not used to being with, when you are the only one, it can be somewhat shocking to be in a group where everyone has a disability. I mean, it's also very healing if you hang in there, but if you see disability as a great stigma and there you are in this group, you're going to run very fast, you want to get out, to dissociate yourself. So I think for some of the women, it was stressful. But for others, it was wonderful because they had all these issues that they struggled with, and they never really talked with other disabled women about them, like dating and job discrimination and all those issues. They had not had too many conversations.

Some had. Some had gone to segregated schools and camps, and some had some of that. But others, the most mainstreamed of the group had not. There was a doctor in the group who — which was amazing, I mean to have a doctor with polio who had gotten into medical school as a woman and as a woman with a disability was, it was a super achievement — but she had never really had any contact with other women. And when we had this conference, she said, "It's going to be a whole day? What are we going to do for a whole day?" You know.

And she did not want to leave at the end, because it was so meaningful for her to share, to hear other women and to break down some of the isolation.. I think it was as useful for the women as it was for the girls, ultimately.

It was a wonderful experience. I learned so much. I met so many wonderful friends among the women and among the girls, and it was just, just a great opportunity for me.

Currently, I am doing a number of things. In my 40's, I had this burning desire to do something with my hands or something non-verbal. I was so sick of words.

And so, I got involved in painting and discovered that it was for me a great source of expression. I wound up doing a number of autobiographical paintings of my birth and my sense of being the only one. The most amazing part for me of painting was that I often had thought of myself as a bit on the depressive side, you know, as a person. And when I was painting, I used these really bold colors, I was drawing bold colors. I had one of these great opportunities to discover a new part of myself, like, that bold woman is in there somewhere and she's coming out.

More recently, I'm involved in — I've been working on a memoir. Or, it's more a set of personal essays.

Ken

What's the difference? How do you make that distinction?

Harilyn

Well, only in the format, more the format. A memoir is more a cohesive book, in general it is. One could call these essays a memoir. That is, they are certainly essays about my life. But it's many different formats, from short two line sentences to stories to poems.

Ken

I'm curious, Harilyn, do you feel like you're writing for yourself or do you feel like you're once again mentoring by putting this out into the world and letting others read it?

Harilyn

Well, you know, my biggest fantasy, which is probably unrealistic, is that I hope… I keep trying to figure out what it would take for young people to claim disability without the stigma. And so one of my goals was to communicate that in ways so that they don't have to repeat the process of denial and passing and minimizing and not asking for help.

I think, honestly, it's not realistic in terms of adolescents. I think all adolescents go through that crisis of not wanting to be different — even if they're not disabled — but maybe it's too much to ask. But I have one piece in this book that's sort of a letter to young people with disabilities, talking about my journey from denying my disability to getting to a better place, and what the different things were that helped me along the way, like the women's group and just meeting other disabled people, falling in love, you know, and painting and writing. All my ways of claiming disability with pride rather than it being as a negative. So, that's one of the goals.

It's also a way of self-discovery. You know, there are questions I've had about myself that I'm working on figuring out. Like why is it when I look in the mirror and see myself walk, I'm always shocked. It's because my internal image of myself is still not disabled like everyone else. So when I see myself with my toes turned in, I'm always surprised and embarrassed. So I have written a piece. I'm trying to figure out, part of it is internalizing societal attitudes.

And my mother was very concerned about my walking because she felt that that would be the thing that would be most noticed and most trigger people's reaction. She and I had many years of struggle over practicing to walk straight. She wanted me to walk straight. I didn't want to walk straight. And finally she gave up. But I internalized the messages. She ultimately won the battle because I got it.

Ken

Yeah. 'Cause it's in your head.

Harilyn

It's in my head. I don't need her to tell me anymore. So, it's those and other issues, like around my speech and communicating and what it means to me when people don't understand me and ask me to repeat it and how it feels, and when people come up to me after giving a militant speech, and say, "Oh you're so inspirational." In a way, that means they have not understood one thing I'm saying except that seeing me, seeing my disabled self there, to them triggers patronizing attitudes…and that's all they got [from my speech], that's all they got. I could tell them to go and whatever… I could tell them… I mean, there's not much I could tell them, it doesn't matter. They haven't heard it, you know.

Ken

You used a strong word. You said a "militant" speech. Militant how?

Harilyn

Well, militant in terms of challenging the notion of beauty or womanhood or what is perfection, or more in terms of challenging attitudes questioning them.

Ken

Not so long ago, Lawrence Carter-Long told me that his art and his disability — he's a dancer and he has cerebral palsy.–

Harilyn

Right, right.

Ken

– Are inseparable. He says that when he dances, he's not overcoming anything — that his body is as it is, is simply the material he uses to make art. His words. Does his view ring a bell with you? Does that sound like how you feel, or do you experience things differently?

Harilyn

Well, I would love to have his position. I don't always. I think my socialization has limited my ability to fully use my body as well. I'll give you an example. In my painting, you know, with cerebral palsy you have involuntary movement, so doing things straight, painting straight lines, drawing straight, it's a challenge.. So one of my art teachers and I were working on a piece of paper and she said, "I want you to capture your involuntary movements on the paper." And she said "Make some strokes and we'll see." And I made some strokes and she, she had me going and going and she finally said, "Gee, I can't tell any difference between those strokes and any other person's strokes." And I said to her, "Well, you know I've been socialized so well to minimize those differences and not let them out of the bag." I've trained myself to be "normal".

It's almost like I have to untrain myself so that I can be more of myself, you know? I mean, sometimes I do it more than others, but it requires more of an effort to let go, to feel free and to do things.

Ken

Do you think that the difference between how you feel and the feelings Lawrence described are generational?

Harilyn

Partly. I mean, he's younger.

Ken

And maybe it has to do with gender again, as well.

Harilyn

Maybe. Maybe. I'd like to think that the younger generations have been helped by the disability rights movement and disability culture in art, and so they feel freer to be themselves. I have to work more because I can paint something and it's crooked and it may look perfectly fine, but I still need to "normalize" it because It's like I'm afraid to reveal something about myself. Some defect about me.

Ken

You believe that viewers of your painting can perceive that in the painting?

Harilyn

Right. Or I'm afraid they will, and you know it's the same with writing. I find sometimes — writers choose their words carefully, but sometimes I choose them with the notion in my mind that I don't want to reveal something, some things about myself. I'm afraid that somehow I'm going to reveal something.

You know, it's partly because sometimes because of societal attitudes, I think that disability gets internalized as a defect in your soul. Like there's something in there that's bad. And I'm happy that I've overcome a lot of that through my involvement with disability rights and arts and all my friends. But it still lingers, you know. There is some fear of revealing something, some freak that's going to jump out. I don't think that's unique to the disability experience, many people harbor that fear, you know, that they can't fully be themselves for fear of what will be revealed.

Ken

And it seems some people are on the edge of panic because of that.

Harilyn

Yes, That's right. But I think when you have a concrete disability it becomes easier to hang it on that disability and somehow make that whole thing.

Ken

Fascinating. What's next for you? You're so full of energy, I can't actually see you sitting still.

Harilyn

I don't know, I'd like to finish this book. I've been working on it forever and that's my goal.

Ken

Well, I guess you need an editor to kick you in the pants and say, "Get that done."

Harilyn

Well, I have a good writing coach who helps me, but it still needs more work.

Ken

Are you still in the psychotherapy profession?

Harilyn

I haven't totally let go of the psychotherapy; [I still counsel people, primarily those with disabilities]. In addition, one of my favorite parts of the work I do [now] is writing about artists with disabilities who I like to help promote, and also having events, cultural events for people with disabilities who really have not — I mean, people who are involved in the disability rights community are unique in their exposure to disability arts. Most people with disabilities out there have not had a chance to see the positive nature of the disability experience and how it can be expressed in art, music and dance and all those things. And so, providing exposure to the arts is very important to me. And also motivation. I think there are too many, still too many people with disabilities who lead rather restricted lives, who don't believe they can have a fuller life, and I'd like to broaden that view.

Ken

That would be an incredible achievement.

Harilyn

Too many of us have learned to be cautious and careful and try to not create a commotion… If we just realize that difference is part and parcel of life and everyone can walk down the street differently and not be stared at. But we're not there yet…