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Ed Heaton Discusses Disability Arts and People First Language

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Ed speaks with Leslie Fanelli about "disabled artists" Or as she prefers to say "artists with disabilities". Why the use of "people first" lauguage is important when discussing the arts.I

Transcript

0:02 Ed Heaton

Good afternoon everybody. My name is Ed Heaton and I'm here hosting the show on the Disability Arts and language issues. With me today are two guests, Leslie Fanelli, who works for VSA Arts, who also runs her own theater company, Theater in Motion out of New York City. Leslie is an award-winning artist who has done several shows including Disabled, Empowered, and Proud. She has also done -- what was that one called, Eloise at the Plaza? I can't...

0:33 Leslie Fanelli

It was called New York Toy Stories - The Musical and Eloise at the Plaza was a song.

0:42 Ed Heaton

Yeah, that was quite an experience. We'll have to discuss that later. Disabled, Empowered, and Proud, as I said, The Promise of Central Park, and New York Toy Stories - The Musical. Leslie also works for VSA Arts as an instructor in Multiple Influences and Perfection -- give me the right title, so I have-- I know it's Multiple Intelligences. So, what's your exact title of VSA Arts or what to expect from it?

1:09 Leslie Fanelli

Okay. First of all, let me just back up. VSA Arts just had the name changed within the last six months and they just call themselves the...

1:18 Ed Heaton

We're going to mention that in a couple of minutes as we pry into this subject.

1:21 Leslie Fanelli

Okay. Let's just call it VSA.

1:24 Ed Heaton

Right. Oh, VSA. It used to be called VSA Arts.

1:27 Leslie Fanelli

That's right.

1:28 Ed Heaton

But we'll get back to that because that brings up an interesting thing about language in and of itself.

1:32 Leslie Fanelli

All right. Well, as far as -- you want to know how...?

1:33 Ed Heaton

Also, with us today is Sean Dineen. Sean is a graduate student going through his doctoral candidate in counterinsurgency. Do you want work for the Homeland Security Department, Sean?

1:48 Sean Dineen

If they would ask.

1:50 Ed Heaton

He's also on American history professor at Kean. He is a playwright author. He also works for VSA. He wrote "__1:58__ from this Business of Destruction" performed in George Street Playhouse in 2005. He is also a member, along with Leslie and myself, of the Union County Advisory Board for the disabled. And now we can get into the subject. Let's go with Sean. Sean, give me a little bit of the history of people-first language.

2:17 Sean Dineen

Well, it began in Berkeley, California with Mr. Ed Roberts, the founder of the Center for Independent Living. In the 1970's, as a result of the passing of the Rehab Act, it was a great deal of change in the community and a desire to create a positive impact, and Mr. Roberts felt language was extremely important in that area and the results are a parallel program by a man called John Faulk, who was Vice Chairman of the History Department of University of Texas, and they both believed that person-centered language created greater autonomy and this was a more progressive way of looking at things.

3:01 Ed Heaton

So, let's explain what we mean by people-first language. In my blurb to this show, I was kind of kidding around like this and speak with Leslie Fanelli about disabled artists. She prefers to say "artists with disabilities." So, instead of using negative word confining terms, such as disabled, handicapped, you know, crippled to be even more of an accurate, you know, they like to put the person referred as a person who uses a wheelchair, not wheelchair bound, or artist with disability, not disabled artist. Is that the basic general terms of people-first language?

3:40 Sean Dineen

Yes. It's taking the focus off one aspect of the person's existence and looking at them as an individual, as a whole.

3:49 Ed Heaton

And not as a person who is defined by their disabilities.

3:57 Sean Dineen

Absolutely. One of the key practitioners of this movement, a woman named Kathy Snow, says, "It's transforming a problem to be solved into a person to be celebrated."

4:08 Ed Heaton

Yes. She had a website, disabilityisnatural.com, which Leslie referred me to yesterday. I read some of her articles, very interesting. But, let me ask a question of both of you. By now, wouldn't you think being that the ADA has been passed for twenty years, of being that people-first language, I have first heard about it back in the mid-90s. By now, isn't it kind of like accepted terminology as opposed to the previous negative connotations?

4:37 Leslie Fanelli

If I could just hold you on that, that would be great.

4:38 Sean Dineen

I would say...

4:41 Ed Heaton

Go ahead. Leslie first, then Sean.

4:44 Leslie Fanelli

Okay, thank you.

4:45 Ed Heaton

Go ahead, Les.

4:46 Leslie Fanelli

Yes. People-first language is becoming more and more common in the vernacular in the United States, but I also want to add that backing up to VSA, VSA in Washington, DC is the International Organization on Arts and Disabilities and VSA has affiliates in states all over the country and in at least 65, if not more, countries around the world, VSA affiliates, and at the vast majority of the international VSA affiliates, the language is people first, artists with disabilities, man who is blind, a teacher who has quadriplegia. It's certainly that way with VSA all over the country and it's that way in the vast majority of VSA affiliates around the world. And recently, in June of 2010, I did a theater workshop on Multiple Intelligences and Theater Arts at the International VSA Conference in Washington, DC, which was attended by all those people from all over the world, and the documents that we were given to follow as a part of universal design was to use people-first language because universal design is not just having a ramp or a doorway wide enough or Braille, but it is also part of your presentation in having captioning, sign language, audio description, and people-first language, which I agree with, whether it's artists with disabilities or lay people with disabilities, people-first language. And I just want to also back up that my show that was originally entitled, "Disabled, Empowered, and Proud," I changed the title to "Disability Pride" which is part of people-first language.

6:56 Ed Heaton

Okay. Let's go into this a little bit more. I called up the VSA website while you were speaking of them and explaining the VSA name. VSA was very -- this is directly from the website. VSA was long known as Very Special Arts. Words such as "special" and "handicapped" do not reflect current language trends in the United States and many other countries. Therefore, we are now just VSA -- The International Organization on Arts and Disability. Now, it's kind of interesting. Us who have been in the community for a long time, you, myself, Sean to a lesser extent because he's a little younger, he's lucky, we are used to the name VSA Arts. Do you, Sean, do you know the -- has Leslie told you -- do you know the history behind this name change and who had the idea to change the name?

7:50 Leslie Fanelli

Yeah. I do.

7:53 Ed Heaton

Okay.

7:53 Leslie Fanelli

First back in 1974 when it was Arts for the Handicapped, in 1985 Very Special Arts, the language change of empowerment had not yet come to the fore, but by 1999, when VSA lost "Very Special Arts" and became VSA Arts, it dropped the word "special" because historically in the United States, special education has really meant special segregation and until within the last decades, there wasn't a lot of inclusive education uniting in the classroom students with and without disabilities. So, VSA lost the word "special" because of the negative connotation, and then VSA in 2009 now stands for Vision, Strength, and Artistic Excellence and so that has been decided to be the name of our international headquarters located at the Kennedy Center in Washington, DC.

9:04 Ed Heaton

Right. Now, before we get to people-first language as concerned artists, okay, Sean, I'll ask you a question. In your lifetime, how has people-first -- how has the perception of you been changed by people-first language? What were your experiences -- Leslie mentioned segregated education -- what were your experiences as far as people-first language was concerned?

9:37 Sean Dineen

Well, when I was going through the public education system, that really didn't exist and there was a general connotation, as I'm sure you remember it also, that people were better off, if I may use a rather hackneyed phrase in a more protected environment and I came up and that slowly beginning to change but there was not the attitude of inclusion that we have now and I like to think in a small way by being, as we used to call it, mainstream, I helped change that in a small sense and I believe people-first language is a recognition of adulthood and autonomy. We are no longer cute, helpless people to be acted upon but we are acting on our own initiative and living our own lives.

10:25 Ed Heaton

Sean, you and I were never cute. Leslie, that's another story. But Leslie, you were an adult who acquired a disability as opposed to having one at birth I believe and correct me if I'm wrong.

10:37 Leslie Fanelli

Right.

10:38 Ed Heaton

How do you feel that people-first language has changed things for you personally and your daughter because she had some disability issues growing up? And how do you think that people-first and inclusion has changed your personal perspective or your personal circumstances?

10:57 Leslie Fanelli

Well, I agree with Sean. People-first language is a language of empowerment, which puts the focus on the person as opposed to putting the focus on the disability. However, the people-first language does not discount the disability because those of us in the Disability Rights Movement, especially the Disability Rights Movement via the arts, we maintain that our disabilities are important and something to be celebrated, not denigrated. So, people-first language puts the focus on the person first without excluding the importance of the disability, and I just want to say as a woman who acquired my disabilities and the mother of a daughter with bipolar disorder which manifested in her childhood, once again, people-first language is a language of empowerment and disability pride, which is what I have instilled in my daughter and also in my audiences and my students as a teaching artist for both VSA and Theater in Motion and I also want to just bring up Rosa's Law that was recently passed and it has been...

12:25 Ed Heaton

Is this is a state or federal law? Leslie, excuse me. Is this is a state or federal law?

12:31 Leslie Fanelli

A state law in Maryland. It...

12:34 Ed Heaton

Okay.

12:35 Leslie Fanelli

I'm unsure if it's federal but it's at least state law in Maryland. It was recently passed and it was passed impacted by a little girl named Rosa, who has an intellectual disability and her family, quite frankly, was tired of her being called retarded. So, they struck the word retarded from the language in Maryland and it may very well be now, if not soon, federal, that retarded is stricken from the vocabulary and they're now known as people with an intellectual disability. Once again, the language of empowerment.

13:21 Ed Heaton

They also did that closer to home as well when Governor Christie back in August signed the law in New Jersey striking the "R" word from all state documents, past and present. It sounds to me like, maybe, someone is going to get a contract going through like 200 years of state documents striking the "R" word and, you know, it's a good thing to strike it in official documents but does it change the perception of people with disabilities. It's not only intellectual, physical or any other type of disabilities, there's many. Does just striking the word change the societal perception thereof? Sean first, then Leslie.

14:03 Sean Dineen

I would argue that it does because it is a recognition of progress. Look at the African-American community and all the various races have been used to identify that. I mean, as we have developed as a society through civil rights, we have abandoned older phraseology and that is a symbol, which is an embodiment of an idea. As Martin Bair, the great philosopher said, "It is now a relationship of we rather than I the."

14:31 Ed Heaton

Okay.

14:32 Sean Dineen

Equality as opposed to inferiority.

14:34 Ed Heaton

Okay, Leslie?

14:37 Leslie Fanelli

Well, first of all, Sean is saying very eloquently what I also believe and I want to give an example, a story from my own life...

14:48 Ed Heaton

Sure. Go ahead.

14:51 Leslie Fanelli

Go ahead? Is that what you said? Hello?

14:54 Ed Heaton

Yeah. Go ahead. Yeah.

14:55 Leslie Fanelli

Okay.

14:56 Ed Heaton

Yeah. I'm here. Go ahead.

14:57 Leslie Fanelli

Yeah. Years ago, my kid brother and I attended a tour of an off-Broadway musical and before the First Act was done, my kid brother was escorted from the theater in shame because of his Tourette syndrome. His Tourette syndrome manifested in some tics and the people in back of him became very annoyed. Frankly, his tics were not that bad, not unlike the squirming of probably any other kid his age. But he was shamefully escorted from the theater. We did not get our money back. I went to the back of the theater to stand with him and it was just shameful and horrible. And at that time, although there was nothing I could do then, I promised that I was going to do everything I could to eliminate disability shame and instill disability pride and that has been one of the missions of Theater in Motion, where we feature artists with and without disabilities performing for audiences with and without disabilities. And by disabilities, I mean the whole spectrum of physical, visible, and invisible disabilities united with people who do not have disabilities, which also is an important part of empowerment. And I've been happy to say that over the years, my non-traditional casting has worked beautifully. Theater in Motion has won all different kinds of awards and we're greeted with applause wherever we go, not just because of the casting, I have to say, but also because of the quality of the original performances.

16:57 Ed Heaton

Okay. Well, let's stay with that thought for a second. How many years has Theater in Motion been active and how has people-first language or how has perceptions changing assisted your mission in bringing, you know, theater of disability arts, you know, artist with disabilities, to the forefront as opposed to having them in the background or not having really any artist with disabilities out in the foreground at all?

17:29 Leslie Fanelli

I'm sorry. I need to hear your question again.

17:35 Ed Heaton

Okay. What I'm asking is how many years have you been doing Theater in Motion and how has, over the years you've been actually involved in Theater in Motion, -- how has the people-first language or how has perceptions changed and become more amendable or more, you know, amenable to your mission. In other words, when you started, I'm sure it was a lot harder to gain attraction for Theater in Motion than it is now. So, how has things improved over the years for you?

18:08 Leslie Fanelli

All right. Well, Theater in Motion was founded in 1990, so, that's 20 years, and, of course, it is much more accepted today that it was 20 years ago. Twenty years ago, we were almost the only game in town with non-traditional casting. Today, there are many arts organizations that feature artists with disabilities and I'm happy about that. As far as I'm concerned, more is more. I don't look at that as competition. I look at that as a celebratory expansion of the arts, and language is very important. Derogatory language that -- I'm not even going to say the words, the N-word, the F-word, all these kinds of derogatory forms of language have hurt people. It's not just sticks and stones won't break my bones. Language is very important. And the language of empowerment, people-first language, has marched in tandem, or I should say rolled in tandem, with the mission of Theater in Motion, which is to feature artists with and without disabilities into generational and multi aspect in theatrical workshops, residencies, and performances, all of which are original and most of which are musical. And this is also reflected in our -- not just in the language we use but in our performances, which are more and more requested because not only in our language but also in our performance do we celebrate disability pride and empowerment. Our shows, workshops, and residencies are not necessarily about the issue of disability pride. One is, but all the other ones are not. One is about the history of Central Park. Another is about the Toy Stories at the museum of the City of New York in Manhattan, and we have, as a very clear and underlying message disability pride while the show is actually about something else. Did I make myself clear on that?

21:04 Ed Heaton

Very clear.

21:05 Leslie Fanelli

Okay.

21:06 Ed Heaton

Sean, I have a question for you. You're a part-time artist, but mostly, you're a student with disability who is going through a masters, correspond in timeframe and experience what Leslie has just described in her Theory in Motion history, correspond how things have changed for you because of people-first language.

21:29 Sean Dineen

Well, when I went through elementary school, I was segregated and I became part of the first inclusive middle school and high school class in the State of New Jersey. I also designed the first adapted phys ed program in my high school, which is still in use and as I went on to college, there was a great ferment in the larger world with the passing of the ADA and so on and as originally, I think I was more of a novelty than anything else but as time went on, I became an active student and I was accepted fully. It came in a way that I had not been in other places and I think that is directly the result of people-first language because I was no longer the guy over there in the wheelchair. I was Sean Dineen who had a lot to say and had actually someone willing to listen to him.

22:27 Ed Heaton

Okay. Now, I'm going to give a little bit...Sean, how old are you by the way?

22:30 Sean Dineen

I'm 36.

22:31 Ed Heaton

Alright. I'm going to give a little bit of my history now. I'm 50 and I went to a segregated grammar school in Newark called Brentwood School back in the late 1960s and early 1970s. And Brentwood School was originally a school designed for post-polio patients back in the 20s in Newark. And what happened was after polio was cured, they still took in students from other districts to fill out their class sizes but what was different about transfer up was that the education we received was the same as a non-disabled student. There were students with intellectual disabilities who either went to the resource room, which is what we called it, a couple of periods a day. But what happened with myself was because I had had the education that I needed the same as anyone else without a disability, I then went to Kenilworth for high school and I went to Seton Hall for college as what they would call now an inclusive student. Back in my day, they called it mainstreaming. I don't know if they use that term as much anymore but...

23:47 Sean Dineen

Oh, yes. I remember it quite well.

23:49 Ed Heaton

See the thing and I'm going to go a little bit off the language her, the things, this will make an interesting discussion, too. The thing I don't, like, get with this inclusion at all is more of a quashed question rather than a -- Brentwood School had all the services for students in one location. Physical therapy, remedial help for those who needed it because of their disability and what have you. And when you have 566 school districts in the state alone instead of using a regionalized system of education to at least get kids a good grammar school education, aren't you kind of re-inventing the wheel 566 times over and over again with the same special resources, the same, you know, the same educational resources, the same physical therapy resources that might be more inclusive and better organized under a regional type of school? That's my only problem with inclusion there, we kind of like when we said we're going to include everybody. Schools don't do that unless they're forced to because it costs anyway and Brentwood seemed to be a cost-effective solution at that time.

25:02 Sean Dineen

Well, I'm sure it was excellent. I had an early experience in school for young people with mobility disabilities. It was quite excellent, but I think it's more of a psychological thing and if I may, I mean, the segregated schools for African-Americans in Kansas and Louisiana were equal but they had to get rid of them nonetheless because it is an important thing to equalize not in you're all free to live in your own separate sections mindset, but in an inclusion within a larger community.

25:34 Ed Heaton

(Crosstalk) Oh, sure go ahead but this is my question. By including people, by having every school district not follow a basic pattern or the same mold, you know what I'm saying, of inclusion? Some students got more services, some students got less. Then again, how much a school district wanted to spend? Didn't we kind of by putting ourselves into society, didn't we kind of also damage the services we need to go into society? Let's see where you can go on that one.

26:05 Leslie Fanelli

(Crosstalk) Yeah, yeah. I can speak...

26:06 Ed Heaton

Sure, go ahead.

26:07 Leslie Fanelli

I can speak from what I've seen and also what I've experienced as the mother of a daughter with disabilities that went through the school system. I'm a great big advocate of inclusive education, and first of all, it can't always be you, but the model, and I have seen this in multitudinous schools that I've been in as an artist with both Theater in Motion and VSA, is that whenever possible, students are in an inclusive setting and the students without disabilities learn as much, if not more, because of their relationship in the classroom with students with disabilities. They both learn from each other, socially, psychologically, academically, and in a way where everybody is celebrated. I have seen inclusive classrooms work all over the place. And once again, when it is possible, if it is a student with a severe intellectual disability, that student is not going to be in a typical high school classroom with students without disabilities, but once again, whenever it is possible, that does not -- inclusion does not reprise students with profound disabilities getting the services that they need and in each case, it is based on a student's IEP, which is an Individual Education Program, and I support that individual, it's not one-size fits all, and the IEP is a derivative of the IDEA, the Individuals with Disabilities Education Act. And I've just seen, once again, I will repeat myself, I've just seen inclusive classrooms be enormously successful and everybody comes out a winner. Also, I would suggest you check on Rosa's Law. I think it might just be federal. I'm not sure but I think it might be.

28:36 Ed Heaton

Alright. I could do that. Okay. Well, we went off the subject a little bit there that was just interested in your perspectives on that subject. Going back to people-first language, I'm looking at the communication hints the VSA put out last year that you emailed me the link to this morning where you asked me the document of. It was a funny story in a sense, being __29:04__ vision, being descriptive, say, "The computer is about three feet to your left," rather than "The computer is over there." Well, about ten years ago, we had an intern with disabilities who I recruited through the old President's Community on Employment. People with disabilities come to HBO and this gentleman happened to be blind and the first thing he was there was almost comical because I wasn't used to working with a person who had a vision disability before. So, I'm leading him around; however, he had a cane with a ball on the end of it, I guess they call it a ball cane. I'm not sure of the exact description there but I'm leading him around the building and it's like you know, the first couple of times it's "Okay, Isaac, make a left...make a right." Because I had to lead Isaac and I was leading Isaac around the men's room even, for crying out loud, because you know he didn't know the layout of the land. It was almost amusing because it was like I'm on crutches and here I am trying him to keep from tripping over Isaac's cane and trying to also describe to him what he needs to know at the same time so he could function. And he is, you know, people-first language is more like watch people not trip on each other. But the point being, that there is a way to communicate with people who have disabilities and there are ways to, you know, communicate to them in such a way they can understand the point being made.

30:31 Ed Heaton

This is especially true with people with intellectual disabilities and people with developmental disabilities and I'm wondering to that subject as that was -- what kind of responses to your performance you get when you take it down the road Leslie? For those people who have disabilities both physical and intellectual, what kind of response do they -- do people get the point you're trying to make in your theater company without you actually having to hit them over the head and say, "This is about theater arts for people with disabilities."

31:07 Leslie Fanelli

Well, first of all, our shows are for -- and our workshop and our residencies, all of which use participatory original musical theater as the medium. I as the playwright and director and sometimes I work as a co-playwright and director. All of our work is put together very carefully so that when we are performing it is seamless. That is my goal to not "hit people over the head" with the message. They will get it because we are doing it right, and if you look at the document that I sent you, presentation, exhibit and other communication hints...

31:59 Ed Heaton

Right. I have it __32:00__.

32:01 Leslie Fanelli

I utilized all of those. I mean, I'm not going to go through the whole list but I utilized all of those and whenever possible, you know, captioning in American sign language and audio description and all of it just, all of those kinds of combinations, if you will, make the theater experience much richer.

32:29 Ed Heaton

Okay. I have -- that goes to a distant question, which is one I didn't even think of. So when you agree, this goes through a creative process. Most people when, not having been a writer, a playwright rather, I would assumed most people when they have an idea of a beautiful show, think of the idea and think of how to present the idea and think about how to make the music and the, you know, and the script flow, the book flow. When you create a show do you actually sit down and when you have to study, point of creation? Do you actually sit down and take into account all these presentation and communication strategies that VSA Arts have on its page. In other words, when you are studying between a show, what comes first, the show or the inclusivity of the show?

33:24 Leslie Fanelli

Well, that's a good question like a chicken or the egg. They work in tandem and I've been doing this for so long that it's almost the second nature but I have to add as a footnote, I never want the audience to forget that they're seeing, hopefully, a really wonderful, original new musical theater presentation and I keep using these words performance, workshop and residency. Workshop is when I go right into the school and I conduct a theater arts program right in classrooms. Residency is when I come into a school or a university and, I'm an artist in residence over a number of weeks or months that often ends in the student's own original musical performance. And so are my original musical theater productions that I've referred too before, and when I work in a workshop or residency capacity, I call myself a teaching artist, and Sean has worked side-by-side with me for Theater in Motion and VSA as a teaching artist and I just want to add that Theater in Motion in the State of New Jersey is a subcontract of VSA New Jersey.

34:59 Leslie Fanelli

Theatre in Motion in New York City is Theatre in Motion but that's important to say.

35:08 Ed Heaton

Now both of you recently went overseas to Australia, I believe?

35:14 Leslie Fanelli

Yes.

35:15 Ed Heaton

And you went and did some performances over there -- how are their artists approaching this issue over there -- do they approach it differently than Americans do, or how do they approach the issue of inclusion in art based programming in another country? And all that... (Crosstalk)

35:35 Leslie Fanelli

Well those countries... (Laughs)

35:37 Ed Heaton

Yeah, Sean hasn't spoken in a while. Let Sean answer first this time, Les, and then we will get your two cents.

35:42 Leslie Fanelli

Okay.

35:44 Ed Heaton

Go ahead, Sean.

35:44 Sean Dineen

Well, we had traveled over there and then again to South Africa in 2008. It's part of doctoral research from my dissertation and while we were there we met the local VSA affiliates, it's called the Arts Access in Australia, and we found a great inclusion attitude and an accessibility particularly in South Africa they're far ahead of the United States.

36:12 Ed Heaton

In what way?

36:13 Sean Dineen

Just a general commitment to full participation in all aspects of society. For example, there's a 5% minimum hiring in South Africa in cabinet departments and executive positions for people with disabilities. They have had full physical access since the early 1960's, it's amazing, you wouldn't think so, they have embraced this even further than we have I would say.

36:41 Ed Heaton

Uh-huh. Okay Leslie?

36:44 Leslie Fanelli

Okay, and first of all once again, Sean has said very eloquently what is on the tip of my tongue and please excuse me for interrupting as I have several times during this broadcast.

36:56 Ed Heaton

Oh no.

36:58 Leslie Fanelli

I'm just so passionate about this subject. It's very near and dear to my heart. I just want...

37:05 Ed Heaton

Exactly.

37:06 Leslie Fanelli

To also make a correction, it's Accessible Arts in Sydney, Australia, and we were in Sydney, Australia, we were Johannesburg and Cape Town, South Africa. In Cape Town, it's VSA and they are both nations forward thinking in their language and in daily life. And I also want to add that the people-first language is definitely used in the VSA affiliates in Albania, and France, and Egypt, and Sweden, and Singapore, and the Netherlands -- just to name a few. So it's becoming a worldwide phenomenon.

37:55 Ed Heaton

Okay. Question. Well, I think we covered most of the subject without starting to rehash but I want to ask you -- both of you for...

38:06 Sean Dineen

I'm working at the moment.

38:08 Ed Heaton

Oh good, you're working at the moment?

38:09 Sean Dineen

Oh, I'm just telling my family -- this is nothing.

38:12 Ed Heaton

Oh, okay.

38:13 Sean Dineen

Okay, I'm sorry.

38:14 Ed Heaton

Oh, that's alright, Sean, no problem. The question -- I guess I want a good sum up of, you know, a good summary of where US -- first where the US is, secondly where each of you think the US has to improve in terms of, you know, in terms of people-first language and in terms of people-first language, and people first -- not profile, what's the word I'm looking for, now I'm at a loss for words -- people-first thought process which for lack of a better term, people-first programming in terms of audit, in terms of America in general, people first, you know, people-first thought process -- what have we done right and what do we still need to do, Leslie?

39:09 Leslie Fanelli

Well, I just would like to see people-first language spread more, and more, and more. As advanced as we are in the 21st century and the fact that people-first language is inactive and has to use such wonderful -- but we still go places where we hear handicapped and retarded and...

39:33 Sean Dineen

And it's not how many times.

39:36 Leslie Fanelli

Right.

39:37 Sean Dineen

I do, and it's not equality.

39:39 Leslie Fanelli

Right, and confined to a wheelchair, a man confined to a wheelchair instead of...

39:45 Ed Heaton

Or wheelchair bound, which is what I hate.

39:47 Leslie Fanelli

Yes, it's all negative.

39:50 Ed Heaton

Yeah.

39:51 Leslie Fanelli

Okay.

39:52 Ed Heaton

I worked once with a reporter, which is, I've done some reporting using the term wheelchair bound. I almost want to go up and run them over --

39:57 Leslie Fanelli

I hate that.

40:00 Ed Heaton

Run them over with my scooter and say, "Well, am I scooter bound now?"

40:04 Leslie Fanelli

Oh well...

40:05 Ed Heaton

Because if I could just briefly -- no go ahead, go ahead Sean.

40:08 Sean Dineen

I'm sorry, I didn't mean to interrupt.

40:10 Ed Heaton

No, go ahead, please, I--

40:11 Sean Dineen

It's just a little amusing but it's irritating at the same time.

40:13 Ed Heaton

Yeah.

40:14 Sean Dineen

What I find annoying is just the general assumption that we are surrounded with helpers, we do not have friends, or family, or romantic partners we might be someone with, anyone with this has automatically hired help.

40:28 Ed Heaton

(Laughs)

40:29 Sean Dineen

I've gone places and someone will say, "Well, is your aide coming to the table or are you allowed out this time of night and... (Crosstalk)

40:36 Ed Heaton

(Laughs)

40:38 Sean Dineen

It's a small thing but it's symbolic of an outmoded paternalism that I want to eradicate.

40:42 Ed Heaton

(Laughs) Somehow that's never happened to me, maybe I'm just a little more outgoing.

40:48 Sean Dineen

I tend to get very sarcastic and say something like, "Sorry, I don't know what time it is!"

40:52 Ed Heaton

(Laughs)

40:54 Sean Dineen

Humor helps as you well know.

40:56 Ed Heaton

Yeah, but what...

40:56 Leslie Fanelli

Right and it's important to have a sense of humor, but the thing is -- we know negative language and negative stereotypes still persists. And it's important as people who use the people-first language and our proponents of people-first language and disability pride, we just need to keep bouncing up. And, you know -- I just want to add as a footnote that I combine, I make it my mission to combine people-first language and people-first thinking while still celebrating disability, not denigrating it with award-winning theatre arts.

41:44 Ed Heaton

Okay, it sounds like you just wrote your 30-second promo. (Laughs) But listen, seriously, the question is and I want to tighten up the question a little bit -- what does America or what does the US need to do as far as being more progressive, as far as including more people with disabilities into theatre arts, into all the arts, for example. Would it be theatre, television, radio, what have you?

42:11 Sean Dineen

Well I think the need to develop what the Africano people in South African call a Group __42:17__ that is a consciousness of individual people who have achieved and succeeded in a large -- well, rather than let's put some of these folks on there because it will make them feel better, the old medical model, we need to celebrate and discover our achievements in all aspects of life as the Australian and the South African have done so well.

42:38 Ed Heaton

Okay, Leslie?

42:41 Leslie Fanelli

Well, I agree with that and we -- people like me and Sean, and you Ed -- we just have to keep doing what we're doing.

42:55 Ed Heaton

Yeah, you know, it's kind of -- this could wrap it up on my -- but it's kind of funny, I never saw myself as a disability activist. In fact there was the 20 years with HBO and not until the later part of my career did I actually get involved in disability activism as it might be called now, or get involved with disability issues. It's an interesting perspective but I still, at the end of the day, with all odds I think we need to get to the point where we're all planning to get to where everybody is inclusive. Like I like doing reports on disability and shows on disability subjects, but that doesn't mean I can't also write, I can't also do shows on any other subjects... (Crosstalk)

43:38 Leslie Fanelli

Exactly.

43:40 Ed Heaton

But for me to get a foothold into the media business. You know, I have to set myself up in some kind of X group where I can reach out to people, like you and Sean, you know what I'm saying, to say, well this is the disability perspective on things, you know I'm saying?

43:58 Sean Dineen

I did know what the founder of HBO said about individual perspective.

44:01 Ed Heaton

So, why don't you inform me?

44:04 Sean Dineen

He said it's an embrace, not an orgy, in other words it is a path, not an ultimate destination.

44:10 Ed Heaton

Yes, agreed, but this is a path to get, it's a path to get to the point where I can be, you know, in the media more than I am now, you know what I'm saying?

44:19 Sean Dineen

Well, if I may say so Ed, your general achievement in life both with and without this particular outfit has been amazing. You made a conscious decision a long time ago to involve yourself in a larger world and you deserve a lot credit for that.

44:34 Ed Heaton

Well, it's not, it's not a conscious decision. It was like, now that we're going, now we're done with the official interview we will keep, because this is interesting, we still have a few minutes left. You have a choice in life, you play or you fold, and I could've folded and just became, you know, a person with a disability who's getting SSDI and living off the dole and I chose not to, you know, it's just that I chose not to, it wasn't like a hallelujah moment. You know, I didn't like, one day I woke up and said, "Okay, I'm going to do this now." I just keep doing whatever I do and it goes wherever it leads me.

45:09 Sean Dineen

But by doing that you are reflecting a positive image for yourself as an individual but also for the community. You were saying "I am here, accept who I am as an ordinary person and let's get on."

45:21 Ed Heaton

I hope so but I mean, if someone tells me I'm their role model, I'm going to slap them because I never -- like a friend of mine once said, I never grew up to be anybody's role model. I grew up to do what I do. You know?

45:31 Leslie Fanelli

Well... Why and that's...

45:33 Ed Heaton

And that's how I look at it, I mean.

45:35 Leslie Fanelli

That's a big part of the disability rights platform is we don't want to be your hero, we just want -- have the rights of ordinary citizens. It's part of the moral model of disability which I really can't stand and the moral model is where the part of -- an important part of the moral model is where the person with disability is either, you know, a saint or godlike, or the opposite, like Ahab in Moby Dick, it's either the tiny Tim or the...

46:14 Ed Heaton

Oh, I know, I know, do you know what we call this? Right, you know what I call that...

46:20 Sean Dineen

__46:21__ syndrome.

46:21 Ed Heaton

Yeah, but you know what I call that in the vernacular? The super crypt. You know, because...

46:26 Leslie Fanelli

Right!

46:27 Ed Heaton

The only person who ever gets on the news is somebody who's like riding a bike with one leg for a thousand miles, or you know, going around the country in the wheelchair-type thing, like the Terry Fox story type of -- you know what I'm saying?

46:43 Leslie Fanelli

Right, well the super crypt and the role model are derogatory for the whole movement. It really is.

46:50 Ed Heaton

Right, and please that's beyond -- but that's beyond you ever see on the television screen. And I always call it the super crypt because it always just annoyed me that more features weren't done on people like you and Sean as opposed to people who, you know, that climb Mt. Kilimanjaro, what have you to use a discretion.

47:12 Sean Dineen

Well, to quote my favorite late playwright, the late Wendy Wasserstein, "Our task is to rise and continue." In other words, in our ordinary existence, in our refusal to be defined as society wishes it to be, we are engaging in our own life and we are breaking paths for the next generation, at least that's how I like to think.

47:31 Ed Heaton

And that's a great way to end this show. I couldn't think of any better way, any better ending comment unless Leslie has her last thoughts she might want to slip in, which will give her the opportunity, because if Leslie doesn't speak the world stops turning.

47:44 Leslie Fanelli

(Laughs) Ed...

47:47 Ed Heaton

Leslie, do you have anything you want to add... (Crosstalk)

47:50 Leslie Fanelli

Of course I do. A while back you said that you had not really thought of yourself as an activist and I have to say that from the ghetto I always considered myself as an activist through the arts.

48:08 Ed Heaton

Uh-hmm. Is that because of what happened to your brother? Or is that because of something -- in other words, I didn't have a hallelujah moment, did you?

48:19 Leslie Fanelli

That was a hallelujah moment, yes indeed. And since then I have had many because I have a daughter with profound disabilities, and I acquired several disabilities in middle age, so I had hallelujah moments all along and also in working with people with disabilities, but that was the start. And it was a painful, dynamic, never to be forgotten start, and it put me on my mission of activism through the arts.

48:55 Ed Heaton

Okay, well on that note we're going to end this show. I'd like to thank Sean Dineen and Leslie Fanelli for participating. And this show will...(Crosstalk)

49:05 Leslie Fanelli

Thank you, Ed!

49:07 Sean Dineen

Thank you again.

49:09 Ed Heaton

And I'm going to call up both of you back after the show and we have a little discussion that we need to have, you know, about the show and whether we keep it up for a while, or whatever. But I'll call you both back in a minute on my phone.

49:23 Sean Dineen

All right.

49:24 Ed Heaton

And I'd like to thank both of you very much for being on the show today. This is Blog Talk Radio. My name is Ed Heaton and I've been here with Leslie Fanelli and Sean Dineen.

49:32 Sean Dineen

Thank you.

49:33 Ed Heaton

Hope to do this again soon.

49:34 Sean Dineen

Absolutely.

49:35 Ed Heaton

Bye-bye everybody.

49:36 Leslie Fanelli

Thank you! Thanks, bye!

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