Interviewing Susan Nussbaum and Michael Pachovas

Studs Terkel Coming in not with a wing and a prayer but on-- by themselves on their powered wheelchairs, Susan Nussbaum and Michael Pachovas. Susan Nussbaum of Chicago, Illinois. Michael Pachovas now of Berkeley, California, which is a story in itself. They're here to talk about a most remarkable rally that will be held in Washington and about themselves, their lives, and how many millions of handicapped people are there?

Michael Pachovas Thirty-six million.

Studs Terkel Thirty-six million, which is the oldest minority group in America and the largest and there's a Disabled American, Americans, Freedom Rally in Washington in front of the White House, Lafayette Park, September 7th, 8th, and 9th to talk about what is being done as far as this country is concerned and money and attention-- attention in a non-patronizing sense to thirty-eight?

Michael Pachovas Thirty-six million

Studs Terkel Thirty-six million people. So in a moment their thoughts after this message. Before we hear from Susan Nussbaum and Michael Pachovas, let's hear from Lily Tomlin. Lily Tomlin is a comedian, yet you know she's more than that. She's an observer and she's talking about one of her characters in her world, Crystal, who is a quadriplegic and there was this discussion. [new tape starts] And that's the energy, so it leads, of course, to that poor quadriplegic and who's patronized and we see these horrendous marathons, and you can go into them, which has a star, whether it's for palsy kids, these horrible marathons, you know--

Lily Tomlin Telethons, you mean.

Studs Terkel Telethons, telethons, I mean.

Unknown Now they even have marathons.

Studs Terkel So now we've come to Crystal.

Lily Tomlin Yeah. Well, Crystal wouldn't have any truck with no telethon, you know.

Studs Terkel Describe Crystal and how she came to be.

Lily Tomlin Well Crystal is just, you know, Crystal's a person in a chair who is a quad who just has a lot of guts and a lot of heart and, ironically I mean, you know, people in chairs, of course, in the past four or five years have had a great deal more visibility. And so now Crystal seems kind of even--

Studs Terkel Normal.

Lily Tomlin Dated in a way, you know. I mean it's nothing radically new, but the point of Crystal's monologue is--

Studs Terkel You see when I said, pardon me, I pulled a horrible boner just then. I said "seems normal," I said.

Lily Tomlin You did.

Studs Terkel As though she weren't normal. Isn't that interesting?

Unknown

Studs Terkel Coming in not with a wing and a prayer but on-- by themselves on their powered wheelchairs, Susan Nussbaum and Michael Pachovas. Susan Nussbaum of Chicago, Illinois. Michael Pachovas now of Berkeley, California, which is a story in itself. They're here to talk about a most remarkable rally that will be held in Washington and about themselves, their lives, and how many millions of handicapped people are there? Thirty-six million. Thirty-six million, which is the oldest minority group in America and the largest and there's a Disabled American, Americans, Freedom Rally in Washington in front of the White House, Lafayette Park, September 7th, 8th, and 9th to talk about what is being done as far as this country is concerned and money and attention-- attention in a non-patronizing sense to thirty-eight? Thirty-six million people. Thirty-six million people. So in a moment their thoughts after this message. Before we hear from Susan Nussbaum and Michael Pachovas, let's hear from Lily Tomlin. Lily Tomlin is a comedian, yet you know she's more than that. She's an observer and she's talking about one of her characters in her world, Crystal, who is a quadriplegic and there was this discussion. [new tape starts] And that's the energy, so it leads, of course, to that poor quadriplegic and who's patronized and we see these horrendous marathons, and you can go into them, which has a star, whether it's for palsy kids, these horrible marathons, you know-- Telethons, you mean. Telethons, telethons, I mean. Now they even have marathons. So now we've come to Crystal. Yeah. Well, Crystal wouldn't have any truck with no telethon, you know. Describe Crystal and how she came to be. Well Crystal is just, you know, Crystal's a person in a chair who is a quad who just has a lot of guts and a lot of heart and, ironically I mean, you know, people in chairs, of course, in the past four or five years have had a great deal more visibility. And so now Crystal seems kind of even-- Normal. Dated in a way, you know. I mean it's nothing radically new, but the point of Crystal's monologue is-- You see when I said, pardon me, I pulled a horrible boner just then. I said "seems normal," I said. You did. But As though she weren't normal. Isn't that interesting? We That's

Unknown We were just going to let it go,

Studs Terkel Go ahead pick it up. Pick

Lily Tomlin So the point of Crystal is that she's going across country to go to California so she can go-- in her wheelchair, all by wheelchair-- she's going to go hang gliding off Big Sur.

Unknown Now they're really quadriplegics who have hang glided. That's the truth.

Lily Tomlin Oh yeah they've done everything.

Unknown Yeah.

Lily Tomlin They're just doing everything. In fact, they wanted, the rehab groups across the country and different people in the chair, in chairs, whom I've become very good friends with, and a lot of research was done on the piece before it was done--

Studs Terkel I was going to say you got advice.

Lily Tomlin Oh yeah.

Studs Terkel Yeah.

Lily Tomlin When I would try it out and I worked, it was very, very researched, and anyway if they want a lot of rehab groups wanted to create a kind of Crystal, you know, like a marathon across country with people in chairs and maybe they did it. I mean they probably did.

Studs Terkel What's the reaction of the wheel people? Of the wheel

Lily Tomlin Oh they're very, very positive and supportive of Crystal.

Studs Terkel But you know-- I

Lily Tomlin I mean I thought Crystal was just as important for anybody not in a chair. I mean anybody. Here's a person, a quad, and she's absolutely going to like makeup, you know. I mean she's got a-- first of all, everybody I know in chairs anyway, particularly women, have incredible humor. You know, I mean they just have absolutely passed over. I mean they had to like really confront incredible feelings and--

Studs Terkel Do that-- I mean I don't want to exploit you, which I'm doing of course, but I'm just, one little moment when she comes to the restaurant with that guy, with the colleague, and--

Unknown Little Mary Sunshine.

Lily Tomlin Oh and she says, okay and let's see.

Studs Terkel Yeah.

Lily Tomlin Oh she's-- okay let me see if I can do it. Oh darn it. She's talking about going, taking a wheelchair into public places where the doors are narrow and so she's just said "I had a friend once got caught in a revolving door. We had to buy the building. And restaurants outside Detroit. I hitched a ride with an old trucker named Little Mary Sunshine. We dropped in at the House of Waffles. The waitress took Mary's order then said 'What will she have?' referring to the tumbleweed here like I was a dinner roll. Very loudly I said 'I will have a tongue on a bagel.' When we finished she again spoke to Mary, 'Is she finished?' I said 'Yes, I am. It was good. Yum, yum. Thanks.' But she gave my change to Mary. When we left, I just rolled over her foot with my wheelchair."

Studs Terkel And so in hearing Lily Tomlin talk about a friend, the quad, Crystal, thoughts concerning-- Susan Nussbaum, what's the thought comes to your mind?

Susan Nussbaum Well, there are a lot of conflicting thoughts.

Studs Terkel You're

Susan Nussbaum And I think that what-- Yeah.

Studs Terkel You and Michael are quads.

Susan Nussbaum I am technically a quad, I guess. I think that what, a lot of what Lily Tomlin has really shown through creating Crystal is that yes, disabled people in this country face tremendous physical and architectural barriers and all of that kind of thing, but there's also a kind of social, attitudinal barrier that is sometimes-- often-- much harder to change, to deal with, to break down all the mythology in people's minds about what a disabled person is, what a disabled person can and can't do, whether or not you're going to catch it if you're going to be in the same room with one, and just what our capabilities are. So I guess we've organized the Disabled American Freedom Rally to talk about some concrete issues, yes, but also to hopefully influence the way people perceive it in their hearts the way disabled people are and what kind of a lifestyle we want to build for ourselves and what has been in the way of us doing that for the past decades.

Studs Terkel Michael Pachovas.

Michael Pachovas Well, I think one of the interesting things that she brings up is the word 'disabled' and 'handicapped,' you know, almost synonymously, but I don't know, a physical disability is a physical disability, it's not a sickness. It may be an illness of some sort but it causes some physical inability to do something that you want to do and I think that most of what handicaps people with physical disabilities are the very attitudes that Susan was talking about. Either attitudes that this person is not going to be capable of holding down a job. This-- you know, I'm really afraid to deal with this person because I don't know how uptight he is about his trip and being in a wheelchair or walking around with his cane or whatever it is.

Studs Terkel Let's talk about specific things, your daily lives, what a guy would call 'the little things in life.' A guy I knew, he'd say 'the little things in life that are big things.' For example, you two got powered wheelchairs. Now the word 'power's' interesting because you're looking for power too. You got powered wheel-- you guys can't ride on airplanes, can you?

Michael Pachovas Nope.

Susan Nussbaum Oh, that's not true. We can and do ride on airplanes all the time, but what we have to do is be willing to go through unbelievable red tape before it happens.

Studs Terkel Like

Susan Nussbaum And it's also true that some airlines are better than others, but many disabled people are on fixed incomes and have financial problems that prevent them from taking advantage of all things that everybody else sort of takes for

Studs Terkel No, I meant powered wheel-- you said you can't.

Michael Pachovas Yeah that's why I said 'no' and she said 'yeah,' but I think we were just talking about two different things. Now why would I say no because they'll let me fly my wheelchair with me anywhere I want to go, but they will not let me take my batteries. There's one airline that will, United, but I think that's because Bob Sampson's a vice president there and he needs his electric wheelchair to get back and forth to work. Most airlines, most public carriers, discriminate against people who have

Studs Terkel Coming, say coming to the studio, to this building, about a half an hour ago, you came in and you said something interesting about getting in. How easy it would be to have a little ramp.

Michael Pachovas Right, you only got two steps down there, Studs. I mean it's not like a big deal. All someone'd have to do is take a nice chisel, hammer, jack hammer, and knock a little ramp about three feet wide coming up the slope right under those steps and it'd be cheap.

Susan Nussbaum In Denver a bunch of disabled people have been advocating for curb cuts around their city for ages and ages and weren't getting any action on it. So finally, one day, a bunch of them went out with sledgehammers and made their own curb cuts and I think that's the kind of thing that's happening more and more now that disabled people perceive themselves as a large and powerful minority group with civil rights issues instead of just being the sort of pathetic poster kids that everyone else thinks about. We can do more. We do have more power. We tend to put up with less waiting around for people to hand out the crumbs.

Studs Terkel So, you know, by the way, this would not have happened, this rally you're having and the way you're talking now-- or you two would have talked that way before-- but before the 60s. I wonder, for example, the old, poor, old people, we know that Maggie Kuhn and the Gray Panthers have an old people's movement. She hates the word 'seniors.'

Michael Pachovas She doesn't like 'age' either. I'm in the Gray Panthers and I'm only 33.

Studs Terkel Yeah.

Michael Pachovas It's youth and age in action.

Studs Terkel What I meant was there's a-- they're saying 'wait a minute.' And so there's the old people's movement all began, I suppose, the Civil Rights Movement of the 60s and this is probably a continuation of it.

Susan Nussbaum Oh yeah. There's lots of parallels between our movement and other Civil Rights Movements in this country. Lots and lots of parallels.

Michael Pachovas And also there are some differences in that we don't have civil rights in the way that we do allow other minority groups.

Studs Terkel Like what?

Michael Pachovas Well, for example, the only civil rights that we do have is a section called 504, the "Rehabilitation Act of 1973," which is a whole mouthful, but basically it says you're not supposed to discriminate against disabled people if you're getting federal money. And even that, which is limited, and that's not saying I can't go to a store somewhere in another state and that guy can't say, 'sorry, I don't want wheelchairs in here' and throw me out. Or that a guy with a guide dog can't take his dog into that place to be able to get around the store. You know, it's real strange that we don't have these kinds of laws and when I broke my neck, you know, I didn't give up my voter's registration card and I didn't give up my library card and I didn't give up my driver's license, but now if I want to still do those same things, it's a real pain.

Susan Nussbaum Right and I didn't stop paying taxes and yet I'm prevented from getting on the public transportation system which I help support. I have incredible difficulty getting from point A to point B just because of those kinds of barriers. I do it because I got-- there is the right support systems in the community and people are willing to help me out a lot and that kind of thing, but it does cut down on my independence and I resent that a lot.

Studs Terkel And you're saying that there's no reason why there shouldn't be these facilities whether it be public transportation, whether it be one form of travel or another.

Michael Pachovas Well either that or quit calling it public.

Studs Terkel Yeah

Michael Pachovas I'm public.

Studs Terkel Yeah, you're right.

Michael Pachovas She's public. You're public.

Studs Terkel Yeah.

Michael Pachovas Bruce back here is public.

Studs Terkel Bruce

Michael Pachovas Why have I lost my right to be a citizen because I broke my neck when I was working for the government? Why should I not be able to get into a voting booth? Now we got this block grant package that Reagan's pushing down, says give the states a whole bunch of money. Let them deal with social services, but don't give me enough money to do something that's real.

Studs Terkel If you can't get in a voting booth, how do you vote? How do you vote?

Michael Pachovas Well you can do one of two things. You can obviously vote by proxy, you know, or by-- what do you call it? Not proxy--

Susan Nussbaum Absentee ballot. Absentee

Michael Pachovas Absentee ballot. But obviously if you're going to vote by absentee ballot it's a different sort of a process because you're not-- you don't have access to the last minute information that might sway you one direction or the other. The other is you go to your voting booth and somebody will come out with the ballot and hand it to you. That's fine if it isn't raining or snowing or doing whatever in a lot of places, but why shouldn't those places be accessible?

Studs Terkel Yeah.

Michael Pachovas And again, let's go back to this block grant thing. We've got to go advocate now at every state level, each state level, for the same programs that used to be federally protected. And yet those same people were saying 'give the money back to the States because it's fair to do that.'

Studs Terkel You're talking about the administration

Michael Pachovas Right. Right.

Studs Terkel The current administration.

Michael Pachovas Right. Are saying 'go to your state and deal with it' and then on the other hand they're turning right around and saying 'but we don't want to fund public access to those places where you can go and get your fair representation. We don't want to build those ramps. We don't want to make public transportation available.'

Studs Terkel What is happening to the civil rights? We're talking about-- there have been some, there have been some protective measures, haven't there? Some measures. What is happening now under, where the budget cuts of the Reagan administration?

Susan Nussbaum Well it's kind of a two-stage thing. The budget cuts came down very quickly and the information was confusing and disabled people, along with all the other minority groups in this country, had to organize quickly and find out exactly what was being cut and what wasn't being cut. As it turns out just about everything was. We lost several real crucial programs. We-- but for the most part our programs were just severely limited. And we're talking about programs and services that are essential to the very survival of many, many disabled people in this country. The chances for someone my age with my potential who's stuck in a nursing home on a fixed income to ever get out of that nursing home now are so impossibly slim. They were always tough, but now that housing subsidies have been cut back, and other support systems in the community, it's going to be much, much more difficult for people to become independent. People with the absolute terrific potential to lead fully participating lives in their communities, to work, and even-- the bottom line of it all is that it costs the federal government less than a quarter as much to provide subsidized housing, if that's the stepping stone that people need to get out of institutions, than it does to keep them shut away in nursing homes and other institutions like that indefinitely. So it doesn't even make economic sense, much less moral human rights sense.

Studs Terkel Yeah but if see, if there's dough given to your civil rights and your basic rights, that would be taking a buck or two away from the neutron bomb.

Susan Nussbaum Yeah.

Michael Pachovas Well you know, first of all, this isn't my rights or her rights in the way that you say 'your rights.' This is our rights. What's going to happen to us in the community if we get hurt? You know we go back--

Studs Terkel Now you're talking about the community at large.

Michael Pachovas That's right. We're the community. Everybody is this community when we're all living here in the same time. I personally could live without the neutron bomb, you know. Especially because I'd like to know how many wheelchairs that would buy. You know, I'd like to know how many children that would feed.

Studs Terkel How many wheelchairs that would buy? How many cities that would buy!

Susan Nussbaum Really. I think most of us would rather see our money spent on improving the quality of life than on perfecting weapons that destroy life and just, to us it never made any sense, but I guess, you know, there you go. We just have to be louder about what it is that we want.

Studs Terkel Yeah.

Susan Nussbaum Although Reagan has has told the country that truly needy people would not be affected by his programs, negatively affected, we are living proof of the fact that that's not entirely true. And now we're facing another battle in the form of the potential repeal of some of our strongest civil rights legislation, which disabled activists have fought for for years.

Studs Terkel What are some of those?

Michael Pachovas Well look, Bush the other week came out with a statement saying that he doesn't think it is reasonable that a school that's two stories high should have to make that place accessible if only one disabled student wants to go there. Or that they shouldn't have to provide an interpreter if a deaf student wants to go to a class. But what he's real short-sighted on again is that that may be only the first disabled person that wants to go there. It's the same kind of crazy attitude as when we go into a store or want to go into a store and the guy says 'why should I make my place accessible? I never see disabled people in here.'

Studs Terkel You know something, you just said something. Bush, the Vice President, in making a public speech-- I'd never heard this before in our history, no matter how many hacks you may have had in the past or demagogues-- actually makes a public speech in which he speaks of disabled people in a way that makes them seem like they're a burden on society. I've never heard that expressed by-- he actually said that. So we're talking about, in a sense, we're talking about a sort of disdain and contempt, are we not, for life.

Michael Pachovas I mean he's right, I

Studs Terkel I've never heard of a politician say, they may have felt it, I never heard him say that out right.

Michael Pachovas Well push it to its logical conclusion then. Obviously from a cost-benefit standpoint, the only thing that makes sense is genocide. If you're not productive, off you. And I don't think that's what we're all about. I don't think that's what America was founded on. You know, and for sure that's not what I grew up thinking. So that's, that's real kind of strange stuff.

Studs Terkel What are some of the protective legislation that would be endangered?

Susan Nussbaum Well I guess our strongest piece of legislation is called "Section 504 of the 1973 Rehab Act" and basically, like Michael mentioned before, what it does is guarantee-- hopefully-- disabled people the right to things like an equal education or the right to get social services in a quality fashion, the right to nondiscrimination in employment. And it also includes affirmative action legislation, which is, as we know, really going to be gone over and a lot of people in the Reagan administration have already made their wishes about affirmative action legislation known, which is they'd like to see it wiped off the books. So that's the type of thing that the Freedom Rally is going to address. Also, I think we planned it in order to celebrate how far we have come, that we've come in the past 10 years to the point where not only have we won a lot of substantial victories, but we're able to organize a strong enough movement to fight back when those new freedoms are threatened and that's pretty significant.

Studs Terkel By the way, let's talk about that, the celebratory aspect. That will be the second half of the pro-- this is-- hitherto it was something hidden. A handicapped person is visible. However, people turn away. It's something-- and we got to talk about the telethons too.

Susan Nussbaum Oh sure, my mother always told me never to stare at disabled people in the street. It was impolite.

Studs Terkel Yeah.

Susan Nussbaum That was before we knew I would be one.

Studs Terkel Yeah. But isn't that, isn't that-- see now, now that disabled people are saying 'Hey look at me. Here I am.' As Jack Jefferson would say in "The Great White Hope," "Here I be." That's what you're saying, 'Here I be.'

Susan Nussbaum Yeah I guess that is what we're

Studs Terkel And twenty-six million, is that what you said?

Michael Pachovas Thirty-six

Studs Terkel I'm getting mixed up on the millions.

Michael Pachovas Yeah. I mean one out of seven of us.

Studs Terkel One out of seven.

Michael Pachovas One out of seven of us all are disabled. That is a big community of people. Seven out of ten of us are going to be disabled even maybe temporarily at some time during our lives. You know we talk about, look, look at the unemployment rate, we talk about 'jeez, it might get up to seven, eight percent.' Sixty-seven percent of us who have severe disabilities who are unemployed.

Susan Nussbaum And you don't see all these disabled people because we can't get out into the community. So many people are isolated, live in buildings that are inaccessible or are, you know, on the 18th floor of a building where the elevator has been broken for a couple of months.

Studs Terkel But you see your battle, don't you, you see it as part of the whole civil rights battle? It's, it's

Susan Nussbaum Mhm.

Michael Pachovas Of course.

Studs Terkel It began with Martin Luther King, didn't it here, as far as our generation

Susan Nussbaum Yeah, it's human rights.

Studs Terkel Human rights. And then Indians, gays, Chicano, or-- add them all up-- old people.

Susan Nussbaum Women.

Studs Terkel Women of course. And then finally-- not finally, but including handicapped and so that makes a majority just about, I think, if you add them all up together,

Susan Nussbaum It's a lot of people.

Michael Pachovas And our affirmative action kind of stuff isn't around quotas per se. Our affirmative action stuff is grab a bucket of cement and pour a ramp down there on those two steps down the stairs, you know, go put some braille things in the elevator so people know what floor to push. Make sure that if you're going to watch TV, you've got some access to being able to to read the captions come across. That's not a big deal. I mean the entire money, we've got to keep these things in perspective, the entire amount of money that's spent for social services, all the social services, are less than the cost overruns in one year for the Defense Department. Fine. We need defense. We need to work on our economy and we need to have some of these things, but we've got to do it at a reasonable price. It's not enough to have a fast gun. You've got to be able to shoot it straight. And I think that we're doing a little bit of overkill. I mean all of a sudden we've realized that we've been sliding, sliding, sliding into a place where we're becoming economically depressed. And it-- we're pushing totally the other way in reaction that is really harming the lives of those very people that were purportedly out to defend.

Studs Terkel You know, I think, as we take a pause now with Susan Nussbaum, ask about your group, of course, Access Living, and Michael Pachovas of the Disabled Prisoners Program and the rally-- the nature of these groups, how the groups came to be, mostly how your consciousness came into being and your speaking out, your militancy, how that came-- because its the celebratory aspect we're talking about-- this rally in Washington to which everybody is invited, I suppose. Everybody.

Michael Pachovas Everybody. All of us. Let's all go to Washington on Labor Day.

Studs Terkel Seventh, eighth, and ninth and seventh is Labor Day. Eighth and ninth. And so we'll resume in a moment with Susan Nussbaum, Michael Pachovas after this message. So resuming the conversation. Susan Nussbaum, Michael Pachovas. This-- remember earlier we said this particular conversation we're having, groups of which you're spokespeople, would never have existed a generation ago, but now, isn't that so?

Michael Pachovas Well okay,

Studs Terkel Individuals would have spoken out on

Michael Pachovas Different kinds of disabilities would have. I mean there have been blind people on for a lot of years because they didn't need the same kinds of developmental things in medicine and technology that people who are alive now and have, say, spinal cord injury or quadriplegia like Crystal does. I mean, in 1952 right after the Korean War, people who had spinal cord injuries were expected to live four years. Now we're living normal lifespans. All those dimes people sent in, you know, all those march-a-thons, all those things paid for some research that paid off. And that's great. And the technology arrived that we needed to be able to survive the disability part. And again that's the physical part but

Susan Nussbaum The problem is that as tech-- the rate that technology progressed was terrific. They could pick a body up off the sidewalk and stick it in a wheelchair. And yeah, now we can lead normal lives. However society hasn't really progressed at the rate that technology has in terms of its acceptance of people with disabilities. Obviously the buildings aren't built, streets aren't paved with 36 million people in mind. And that really-- that's a big problem. We have to build people's consciousnesses up at the same rate that technology is going.

Michael Pachovas And again let's go back to the celebration. We do want to celebrate that we're here and we party and we love life and we want to go do things that we're doing. I know people that are doing outrageous things. We saw these folks that climbed a mountain a little while ago. Terrific. But there's a bunch of us who can't climb curbs. You know, I mean we've got to keep some things in perspective. We're strolling cross-country with a whole lot of disabled people right now that I'm amazed to see continuing pushing across. We've had major breakdowns on this caravan coming across and their hearts are in it and their souls are in it and they get up every morning with an hour or two of sleep and go for the next city. We get together with people like Susan. We get together with people all over the country saying 'what are you doing? Let's see what we're doing and what are we going to do about trying to survive under the new administration?' And for us that's tremendously uplifting. It's a hell of a lot better than sitting back in your house and complaining and moaning about why things are the way they are. So this is our own very special sort of way. Let's us celebrate this International Year of Disabled Persons. It doesn't belong to the government and it doesn't belong to the United Nations. These are us folks that they're talking about and we want to be able to do some good stuff with it.

Studs Terkel I'm thinking as you, as Michael is talking Susan, how you and he got to know one another, the groups. Is there a committee of correspondence? How does this work?

Susan Nussbaum Well yeah. Actually, I had-- the story about how Michael and I met each other is that I called up

Studs Terkel He's Berkeley, California. You're Chicago.

Susan Nussbaum Right. I called up some friends of mine in Berkeley that I knew who had been going around the country teaching disabled people about their civil rights. And I was interested in talking to someone who had work with disabled guys or women in prison because that's, it's a whole other issue. But, in any event, it was something that came up in my work here in Chicago and my buddies in Berkeley said 'Oh call this guy Pachovas.' And that's how Michael and I started talking together and when he got the idea to begin this Disabled American Freedom Rally thing it was natural that he would call me and that I would spread the word to other disabled activists in Chicago.

Michael Pachovas And our friends, that's what made this work. We didn't go through organizations. We're not an organization. We're a bunch of people who care about what's going on in America with disabled people and we called our friends and she called her friends and they called their friends and we called our families and we threw our SSI checks together and our social security checks and hit the road with our sleeping bags. It's real interesting that we were going to do a rally here in Chicago, but it just sort of was too much energy and too little time especially with trying to organize a caravan coming through here. And on the way we had talked with Mayor Hatcher.

Studs Terkel Of Gary.

Michael Pachovas Of Gary. Who is a personal hero of mine in civil rights work back in the 60s and we said 'you know, we'd really like you to come.' He's on the executive board of the United States Council on the International Year of Disabled Persons. And we said, 'we'd like you to come and deliver the keynote address. You are one of the leaders of the Civil Rights Movement.' And I got a letter back from him and he said that he was delighted to hear from us and his usual honorarium was a thousand dollars and he'd require two hotel rooms and if these arrangements could be worked out then please contact his office. Now I think the man has missed the point about why we're sleeping on a hard, cold ground with our sleeping bags and our air mattresses. He's welcome to come and share my room, but we've got to start really working in a way that's not pageantry. That's not all this frill and get down to the heart of the issue and start dealing with people as people. And that's all of us, whether we're disabled, whether we're black, whether we're women, you know, whether we're redneck or hippies. We've got to all live in this place together and we better start dealing with that.

Studs Terkel Susan, are you thinking of something as-- you know, Michael's raised so many points here. The fact that technology and [certain?] scientific and medical advances has made for longevity generally speaking, but dramatically for disabled people who were given up early when a certain kind of injury occurred. So, therefore, there's a new-- it's a new ballgame, is it not?

Susan Nussbaum Well, I became disabled three years ago. Until then I had been leading a quote unquote normal existence. And I think my main fear when I woke up and the smoke had cleared and I found that I couldn't move was not so much what were going to be that practical problems and adjusting to a disability, but all the things I had in my head about what disabled people were like. They were weird and they never got to do anything and they didn't have jobs and they didn't-- they didn't have sex. That was another big problem for me. So getting over those lies was the hardest part of the whole adjustment for me. Just finding out that there was a movement, that dis-- there were millions and millions of disabled people who had become active, that there were so many things to plug into and that all of us can participate in society as much as we want to, given the right kinds of support systems and everything. Michael was telling me before about his-- how he gets into some rafting trips and stuff down rapids and the types of things that you would never in a million years expect disabled people to be involved in and I guess Lily Tomlin referred to that when she talked about disabled people hang gliding. It's true. And the very fact that this Disabled American Freedom Rally traveling caravan is made up almost entirely of severely disabled people and yet they've been camping out in all of the most, well, less than luxurious-type accommodations along the way and dealing with the vans breaking down every five minutes or so. I mean those kinds of challenges are not the challenges that one normally associates with people who have disabilities, people who can't see or hear or walk, and that's pretty exciting. To be part of that movement makes me feel full of excitement and hope and life.

Studs Terkel You said that's pretty excitement and hopeful. So it was three years ago in your case. It was-- the phrase I use, by the way, with Lily Tomlin, 'normal' in contrast to 'disabled.'

Susan Nussbaum Right.

Studs Terkel And there I was with egg all over my puss. But you had three years ago and it-- and so, there was a-- there was a period, I'm sure, of tremendous despair and depression.

Susan Nussbaum Yeah.

Studs Terkel But then you saw something else.

Susan Nussbaum Well I saw that a disability is a condition on your life an added thing that you have to deal with, but the important things in all of our lives stay the same and are attainable. Work that means something to us. Good friends. Someone to love and get married to. The chance to start a family if you want to. All of those things that I thought were now, or after my injury, were going to be absolutely impossible are very, very possible. There is-- the only the only problem with me doing any of those things would be whether or not I would let myself or the occasional, like we talked about before, barriers that society puts up in front of us. We have disabilities, but it is society that socks that handicap to us.

Studs Terkel Michael, how's it been in your case?

Michael Pachovas Hell. I've never been normal a day in my life. Ask any of my friends, my family. Sometimes I'm better at some things than others, sometimes I'm worse. The thing 'normal' surprises me. I spent 20 years being normal physically. Now I'm expected to pass some physical examination to have the same rights I used to have before. I don't like being normal. I think normal is boring, you know, quite frankly. I would like to be able to be acknowledged for what I do because I am who I am and not because of what my body looks like, because of how it works, because of what color my skin is, because of any of those other crazy things, but who I am inside-- even who I am outside.

Studs Terkel You say normal. Okay. You watch television and there's a man-- he's a general-- or he's high in political office and he says 'oh, you know, we've got to prepare for World War 3.' He says, he wants to you-- he says, 'yeah, it's winnable. It going to be be tough. We got to get an air raid shelter.' So there's a looney talking because-- scientists, those I respect, say nobody can win a nuclear war. And as they talk of mass holocaust casually, they're described as normal. So I don't know what the word normal means.

Michael Pachovas Well that sounds like [kill ratio?] more than normal. Look at the folks who came back from the last war. There are a lot of disabled vets out there. They get a little better benefits than most disabled people who weren't veterans, but they still can't climb stairs. They still can't get equal representation. They still can't [unintelligible].

Studs Terkel By the way, disabled vets are a part of your, are part of the demonstration too, the rally too, aren't they?

Michael Pachovas In respect to everybody who has a disability is a part of this whole movement. Everybody who cares what happens to us when we become disabled is a part of this movement. Every parent who has a disabled child and doesn't want to give them up because he can't afford his health care. All of us. That's the point. That it isn't just Susan and I because we're sitting here in wheelchairs. It has to do with what's going to happen when you get older and can't get around so easy and all of a sudden those bus stairs start looking higher. You know, it's going to have to do with little kids that want to be able to get around and break their full leg and can't get around for

Studs Terkel We're talking about one out of seven Americans, aren't

Susan Nussbaum Yes.

Studs Terkel One out of seven. And at the-- what will be the nature of it? I mean the rally is celebratory, but also what specifically as far as administration, programs, and what it's about and affirmative action's all about.

Michael Pachovas We want to do a few things. First, we want to go through communities where there are people who are starting to struggle for both rights and better health care and things like that, things that are negligible rights in our society, but there are specific programs that we're worried about. We're worried about the minimum Social Security cutbacks because that's going to mean for a lot of young people who hadn't acquired the proper number of hours, they may be cut back. Now I work in a prison and what I learned about working in a prison is that if you commit a crime you go to jail. And even in California you get a determinant sentence. Someday you're getting out. But now you get a young kid who hasn't made enough money to be eligible for one of these programs and he becomes disabled, we put them in convalescent care home. It's one way ticket. You don't get out of there. You can't save enough money to be able to rent an apartment or get out or hire an attendant. Lag times for the amount of hours and days and weeks that you've got to wait for attendant care money coming through is unreal. So when we started working with prisoners, even disabled people who were in prison, the biggest problem we had was not that they weren't getting out, but that they couldn't get out because there wasn't anywhere better for them to go.

Studs Terkel Are there many disabled prisoners?

Michael Pachovas There are about 600 in the Department of Corrections, which has 20,000 men.

Studs Terkel I was thinking, are there different protective programs, legislation in different states-- does it vary?

Susan Nussbaum Yeah I think they vary from state to state. Probably all states could stand a little improvement.

Michael Pachovas We're caught up in this real bad bind where if it costs any money now, forget it.

Studs Terkel Yeah.

Michael Pachovas Except for a few

Studs Terkel Are there some countries where there's a different attitude toward handicapped people?

Michael Pachovas Well we outpaced it. I mean, I think it's sort of like a sprint race you know a long, a long race. We led-- we've held the lead for a long time. As far as being pioneers of both technology and advancement and rights and all that for a lot of folks. But judging from this year there sure a lot of countries that are gaining on us and overpassing us in a short period of time. East Africa is a good place. East Africa is doing amazing things this year.

Studs Terkel East Africa.

Michael Pachovas Yes. Some of the Scandinavian countries have incredible technology. Even here I'm sitting in with an Everest & Jennings control box. They sell better Everest & Jennings chairs in Germany than they do here in California and, at least up to recently and I'm not sure that it hasn't changed, you couldn't even buy a German Everest & Jennings chair. You had to be able to buy it here.

Susan Nussbaum What society maybe does not understand and needs to be enlightened about a little more is that, yes, in some cases, certainly not all, but in some cases it does require the expenditure of some money to ensure the rights of disabled people. However, it's a minor investment when compared to what will be brought back into society by the participation of all these millions of people who will be able to become active consumers and go to the stores and movies and work full time and participate in their communities politically and in all ways, in the PTA, whatever it is, that kind of pay back to society is immeasurable, although people have me-- tried to measure it in terms of dollars and it always comes back to the same thing. I think for every one dollar spent in rehabilitation it's been found that $10 eventually comes back into the community from that rehabilitated person, from that person who has had the benefit of vocational rehab programs,

Studs Terkel Of course it goes back to the theme that you raised earlier and Michael raised that a good program for handicapped people-- and other minorities-- helps society at large all the time.

Michael Pachovas Right it helps us all. Any program that improves the general quality of life for its people is an advancement.

Studs Terkel Or something that puts it down, that cuts it, cuts us all, by the very nature.

Michael Pachovas That's really true. I mean we're worried about all these folks. We're not just worried about those of us who have a physical disability.

Studs Terkel You know we hear talk about generic drugs. I'm going to come to the ramps now. And when you came in you said medical ramps cost more money than other ramps called medical. We know of certain brand name drugs that are no better than generic drugs cost more, drugs-- but as soon as it becomes a pharmaceutical drug-- the word 'medical' automatically adds a cost even though it may be the same product, right? Explain that ramp, the medical ramps you

Michael Pachovas Well the ramp

Studs Terkel About you coming to this building, you know.

Michael Pachovas It's made out of expanded steel. You can go get expanded steel down the street, you know, and make ramps just like by yourself for 20 bucks. You buy from a medical equipment dealer and you're going to pay $175 and--