HISTORY AND PHILOSOPHY OF INDEPENDENT LIVING
February-April 1991 
Instructor: Dick Goodwin

PROLOGUE

This document is a transcript, edited for clarity, of seven classes taught on The History and Philosophy of Independent Living. The classes were offered at the offices of IMPACT Inc, an Illinois CIL. The classes were required for all staff, and available to all board members. IMPACT is committed to the independent living philosophy, and it was felt to be imperative that all staff and interested board members get a strong dose of the rich history and philosophy of independent living. All classes were taught by IMPACT Executive Director, Dick Goodwin. Goodwin has long been an advocate for persons with disabilities, and a student and supporter of the disability rights and independent living movements. He became disabled in 1967 when he broke his neck in an automobile accident in Alton, Illinois. By virtue of longevity he has seen significant changes in the field of independet living and disability rights. He immediately became an ardent student of disability related issues, reading everything he could find. In 1969 he entered college at Southern Illinois University at Edwardsville. In the early 1970's, in conjunction with other students with disabilities, the Disabled Students Association was formed. He has since been associated with countless organizations promoting disability rights, and currently is the Chairperson of the Illinois Network of Centers for Independent Living. In 1973 he received his undergraduate degrees in Sociology and American Studies. He completed his graduate studies and received an MA in Sociology. His employment history includes surviving two years as a Work Adjustment Coordinator at a Rehabilitation Facility, and five years as a Vocational Rehabilitation Counselor for the state DVR agency in St. Louis, MO. He was employed as the Marketing Director of a company that sold wheelchairs and related equipment and supplies. In 1985 he helped to organize a group of persons with disabilities to establish IMPACT. He began as Executive Director of IMPACT in September, 1985, and remained in that position until July 2004 when he resigned as Executive Director due to increasing disability. He served as a consultant from July 2004 through June 2006. He currently resides in Godfrey, IL, with his wife Jan, a professional ventriloquist.

CLASS I

First of all, I would like to welcome you to this class. We do not have a name for this class other than The History and Philosophy of the Independent Living Movement, or Independent Living 101 maybe. It is really an introduction to independent living. There are some different reasons as to why I thought, or why Cathy and I thought that there was a need for this class. Since I've been around for quite a long time, I guess I just assumed that people have certain knowledge about the whole history of the movement and people who are significant in the history of the movement, but as you know, this is not necessarily true. I became disabled back in 1967 and I really took an interest right after my disability in knowing what's going on in the country, originally in the field of rehabilitation and then in the field of independent living. Almost from the start you have to begin fighting different systems just to make it through those systems. Back in 1969, when I started college at Southern Illinois University at Edwardsville, is when we first started raising several issues. The campus was not as accessible as it should be, so we started talking to the administration and organizing. We established the Disabled Student Association to work with the campus administrators. That was back in 1969. I've been at this for quite some time just in terms of trying to promote independent living, accessibility, etc. I have also been interested in reading publications in the independent living field. The first publication I ever saw was in 1968 or 69, a publication called Accent on Living, which we still get today. It comes out four times a year and we have it in our library. It is still a good publication. The editor of that publication is a person who has a disability, Ray Cheever, who is disabled by polio. That caught my eye and was the first publication I had ever seen. That was in 1968 or 1969 when I first ran across that publication. It had a lot of tips about coping with life with a disability. It was very helpful to me to go through it and look at the advertisements to see what was available. That is where I first learned about lifts on vans and a lot of other things I never would have known anything about if I hadn't gotten involved, somehow, in getting information for myself. I have always been interested in reading, to the extent possible, what is available in those kinds of publications. Accent on Living was one of the first ones. Another publication I read was Paraplegia News, which we also get. Paraplegia News is a publication of the Paralyzed Veterans of America. Paralyzed Veterans of America came into existence right after World War II, and one of the topics we will be talking about later is the World War II Era and how it played a role in the independent living Movement. Paraplegia News was veteran oriented, but other than that it also had a lot of good advertisements and was really geared toward people who were paralyzed and had physical disabilities. So again it was very helpful to me to read that. I think I have lived through much of the most significant happenings in the field of independent living and rehabilitation, including probably the most significant original piece of legislation passed in 1973, the Rehabilitation Act of 1973. That is what it was called when it was passed. It was really a piece of landmark legislation at the time and we still operate under the Rehabilitation Act of 1973. On occasion we reauthorize it, change it, update it, amend it, and that sort of thing. In fact, it is up for reauthorization again, to see what direction it should take. I was just looking at a publication today of the National Council on Independent Living, which is the organization many centers like IMPACT belong to in the country. They have a position paper on the reauthorization of the Rehabilitation Act, which will probably be helpful for you to read. Basically they approach this by promoting the infusion of the independent living philosophy, as opposed to the old medical, rehabilitation model, which the Rehabilitation Act still has a lot of that type of language. So, I think it will be helpful to a lot of you, particularly those of you who are service providers, to take a look at that and see how the independent living movement is trying to change that legislation. Obviously over the years we have made a lot of progress in terms of accessibility and that sort of thing, but something all of us who have disabilities know is that sometimes it just all comes back to you. We still have a long way to go with some things. Recently we had a candidates forum in Alton. We think of Alton as an accessible place and which coming along really well and who works with us , but they had this forum at a site that is not accessible and all the candidates who are running for City Council in Alton were going to be there. I am a candidate, but I would be precluded from participating unless we raised the issue. Some of us had to raise the issue and talk to those people and get the location of the forum moved. Now there is another instance coming up concerning the whole development of the Riverfront, and the meeting is being held in the same inaccessible place, and we really need to be there to talk to them about their involvement with us. We need to call City Hall and see about getting the meeting moved so we can be present as the Riverfront develops. They should be involved with IMPACT and they should be talking to us about accessibility. Obviously we have made a lot of progress, but there are still barriers. I remember when we went down to the Shrine for the CP group. We went down with the support group, a group of professionals and people who are involved in the movement, and this little nun comes up to me and says, "Boy, it is nice that you all can get out every once in a while." You know, those sort of comments just go right through me and I do not tolerate those types of statements very well at all. We still have a long way to go, and people still have that attitude. The nun must have thought we all just came from a home somewhere, and were out for the day, or that our caretakers let us out and brought us down there. So, obviously there is still a long way to go and experiencing that kind of discrimination and that kind of prejudice and patronizing attitudes really drives the view of the world that is tied into the independent living view or philosophy. It is just a very different view than the traditional rehabilitation model, and we're going to talk about the independent living philosophy and what that means. I think everyone got the handout about the different topics we are going to be discussing. I would like to go over that very quickly. We will be talking today about the independent living philosophy and the key components of the independent living philosophy. What is independent living? We are going to address some of those things today just to see, and will be interacting and discussing these topics. The World War II Era played an important role, and the seeds at least, of independent living philosophy. I think that era was an important time. Then we'll go on to the 1950's and the polio epidemic, where a lot of the seeds of the independent living movement came out of. With the development of Gini Laurie and her Rehabilitation Gazette, different people with polio around the country were communicating; people with polio talking to people with polio. One of those people was Ed Roberts. It was prior to the independent movement in the early 1970's. Ed Roberts and a guy named John Hessler were two of the founders of the movement in Berkeley, California. They were students at the University of California at Berkeley, and were living at that time in a medical facility while attending school. They began to see that it wasn't the appropriate place for them to live, and they ought to be living in the community while they were going to school. That was really the start of the independent living movement when Ed Roberts and some others got this project funded. It was funded, and that was the first Center for Independent Living and consumer control, and it had a lot of the elements that we still have today. It was a good model for all of us. Not long after the center started in Berkeley, there were other centers that started in Boston, Houston, and Denver. Those are the sites identified in the early to mid-1970's as the beginning sites of independent living programs, independent living centers, and the start of the whole movement. So, the early 1970's is really identified as that time. We will also go through the Rehabilitation Act of 1973. The 1970's were a big time for the independent living movement and the Rehabilitation Act, Title V. We have section 504, which at that time in the 1970's was considered our civil rights legislation. It was really not as significant as the American with Disabilities Act that we have now, but at that time was sort of thought to be the civil rights legislation, and really offered a lot of hope in terms of changing the world. We will also talk about other independent living issues and the development of independent living in Illinois. In my mind Illinois plays a leadership role in many ways in the country in terms of the independent living movement. Right after World War II the University of Illinois set up shop so people with disabilities could start attending school there. A guy named Professor Tim Nugent started a lot of those programs, and I've written to the University of Illinois to get some information about that. Some of it came in today. He was also the guy who was instrumental in the drafting of the original ANSI standard for accessibility. Anytime you see those early standards it was Tim Nugent of the University of Illinois who was really like the Chair of the committee who started all that stuff. The University of Illinois had some strengths, and all kinds of weaknesses in the way they developed those standards, and we'll talk about that. But let's get back to today. We really want to talk about the independent living philosophy, and we'll get to all this other stuff later. For these classes we have eight different areas identified that are important in terms of things we want to talk about, and depending on time, each could last one class, or it could last eight weeks, or whatever. I don't necessarily have a time frame, but I would expect somewhere in terms of eight weeks or so of classes, and that would be my hope. But let's talk about the independent living philosophy and independent living itself today. To begin, I want to focus on the core services CILs are required to provide in Illinois, and expand to the broader concepts associated with independent living. I would pose the question to you, what is independent living, what are some of your thoughts as to independent living, and I open it up to you to comment about it. What do you think independent living is?

AUDIENCE: Comment unclear.

Anything else anyone can think of in terms of independent living and what it is and what it means? Being in control of your own life is basically what it means; it is just about that simple. When the idea of independent living started, I didn't think it was the greatest phraseology. Independent living, at the time it actually started, was a medical concept of being able to go through physical therapy or occupational therapy so you could do things for yourself. That is what independent living meant back in those days. In these days the independent living approach is being in control of you own life. Why is that important? I mean what's the big deal? Why aren't people in control of their own lives? Anybody comment on that at all? Why people are not in control of their own lives? Anyone have any ideas?

AUDIENCE: Society's attitudes and perceptions are a big barrier. There is a general society attitude and it's easiest for a person with a disability to accept that and buy into that as their attitude about themselves.

AUDIENCE: I think that an important concept about this is that parents are really, in a loving way, overprotective and think they are doing the right thing and that society's attitude is based on what we can't do.

People in institutions. We need to examine that. Where did all that come from? Why is that? That's one of the original reasons for starting independent living and part of the independent living history and mission was to get people out of institutions, and have them live in the community. That is a lot cheaper than living in a nursing home or something like that. So basic to independent living, that it is your right to have control of your own life, and definitely, those who pursue independent living are, to say the least, swimming upstream. You are swimming against everything society expects of you, because society typically expects that you can't work, you can't take care of yourself, you can't drive, you are not competent to be in charge of your own life, and that's what we are up against. That's the major barrier. And if you can overcome that, you have overcome a lot. So subsequent to that is a lot of what we do is try to deal with societal attitudes. Let me ask you that question, how do we as an agency try to deal with societal attitudes, or what does our presence in this community do to deal with the attitudes of society.

AUDIENCE: Comments unclear.

One of the places stereotypes about people with disabilities comes from is kids growing up with those stereotypes. They grow up isolated from kids with disabilities and they develop those stereotypes, prejudices, and notions about what it means to be disabled. When I was in high school there weren't any kids with disabilities who went to school with me. The only kids I saw with disabilities were those kids who were on a little bus that drove by me when I was hitchhiking to school. Going to some weird school because they didn't have the ability to come to the regular school. That was my perception of disability, and I think that's the general perception of people with disabilities. I don't think any of us are proud of the perceptions that we had of disabilities in those days, but that was a kind of general perception as to what it meant to have a disability. It was an attitude about those people who went to those schools, who weren't quite acceptable in our schools, who couldn't keep up with people in the regular schools. I think that was one of the promises of 504, to help us deal with that. Section 504 never has gotten to that. I think we still have a long way to go in terms of education; it's still one of the key factors in promoting independent living and integrating kids in school districts. Educating them in the least restrictive environment, program accessibility, or whatever you want to call it. It still has a long way to go. There's no way someone in Alton could go to Alton High School if they had a disability. School districts should be the first ones to welcome kids as opposed to sending them off and telling them that because they have a disability they are not welcomed and they should go to another school. This is long overdue, and it would be great if parents could organize around that issue. Now, as an independent living center, what are some of the things we have to do as independent living centers? Let's start off with some of the services we have to provide. Independent living centers have four core services we are required to provide. Does anybody know what those are?

AUDIENCE: Advocacy.

Advocacy, okay. What is advocacy? There are a couple types of advocacy that we can refer to. One is self-advocacy where we work with people. If someone comes in here and they have a disability, our approach is to try to get them to speak up on there own behalf and be their own advocate, and to give them information about places to go to get help in that process. So self-advocacy is one of the things we deal with and are required to do. The other advocacy is more of a systemic advocacy where you really try to change systems so that people with disabilities can participate more fully. It has nothing at all to do with working with an individual with a disability when you change the system. We have had instances involving the housing authority. They finally changed because the law changed and they were forced to change. Our idea was not so much to get an individual person into housing, although that might have helped, but to get them to change the way they do business so a lot of people with disabilities could benefit. So systemic advocacy is something we're required to do and has to do with removing barriers to full participation in the community. We've got advocacy. What else?

AUDIENCE: Information. Information, what is that?

It's pretty obvious. Somebody tell me what it is. We all know what this is.

AUDIENCE: Information and referral which we usually provide on the phone.

Yes, it's no big secret, it's responding to inquiries whether it's people with disabilities, or family members, or professionals, or the general public. Whoever it might be. We get all kinds of calls from people who are seeking information about a variety of issues and we can either help them to find a solution to whatever they're looking for, or we may tell them about a different agency that might be more helpful than we are or might be more focused on their particular issue. We've got advocacy and we've got information and referral. Anything else that we are required to do? There are four things we have to do.

AUDIENCE: Peer Counseling.

Yes, peer counseling. We're required to provide peer counseling. Again, the whole issue being that you're working with someone who has a similar disability, whether it is someone who is visually impaired, deaf, or who has a similar physical disability, muscular dystrophy, polio, spinal cord injury, whatever it might be. We try to line people up with people who have experienced that disability and can pass information on to the person who's newly disabled or merely seeking a more independent lifestyle, and what to do to set there own goals. So now we have three of the services. We've got information and referral, advocacy, and peer counseling. There's one more. Anybody know what it is?

AUDIENCE: No comments.

It's independent living skills training. We're required to provide skills training to people as they request it to increase their ability to manage their own life, and to know what's available as they consume our services. So those are the four things that we're required by state law and federal law in Illinois to provide. When we have a program audit we always have to show that we are providing those four services. What are some of the other significant concepts that are related to independent living? What are some of the things you think about when you think about independent living? Support? Support groups. Those are an important part of independent living. We have a number of support groups here with a variety of disabilities. People with polio, people who are deaf, spinal cord injury, cerebral palsy, parent support groups. We have a number of support groups going on here and again, it is those peer relationships that are one of the cornerstones of what we do. Support groups is a good example. Anything else?

AUDIENCE: Equipment consultations.

Equipment consultations, yes. We do that, but it probably comes under skills training. Some people have the skills just to go out and get their own equipment, and that is our ideal.

AUDIENCE: Some people see using equipment as regression.

Yes, people view using a wheelchair as a step backwards or the last resort, they say they will do anything to avoid getting in that wheelchair when in reality, sometimes using a wheelchair regularly is a blessing in disguise. That's what really allows you to be a mobile person and you need to get past the stigma that you feel towards using a wheelchair. But in fact, a lot of people don't want to use equipment like that. There's a concept called passing where we can pass as not being a person with a disability, because a disability is minor even. If we don't move around a lot for many years and essentially have no signs of a disability or minimal signs. A lot of people are that way where they just get along okay, but sometimes you pay for that in the long run. Using equipment is not a bad thing, but a good thing. It makes you more mobile and makes you more truly independent as opposed to appearing independent. Anything else anyone can think of?

AUDIENCE: Accepting your disability.

In what sense, how do you mean that?

AUDIENCE: Coping with your disability.

So that kind of comes under peer counseling. Your peer counselor will pass that information on about managing, coping with life or whatever comes up, adapting, and working with people. Accepting your disability might be the wrong way because that idea is just to accept your lot in life, accept your disability. Don't worry about bothering to be out in the community, just accept the fact you have a disability, that's the way it is and that's where you belong, and stay out of our way. Being able to manage your life and cope with what comes up and coming to grips with your disability is a better characterization. Anything else that's sort of integral to independent living philosophy or centers? Public awareness is an important part of what we do. Making people aware, whether it is something we do in schools or just getting out there and being high profile so people see us. The more people see us, the more they're sensitized to disability and the less prejudicial attitudes they will have in general. There is a lot of research over the years which has shown that the more peer relationships or kinds of contact you have with people who are disabled, the more your attitudes are adjusted to where it is not really a problem. It becomes a part of your daily life. Naturally, that's our ultimate goal, that people with disabilities don't stand out in society; they're out there just like everybody else. Often you find that on college campuses people routinely accept disabled people as part of the regular environment around campus. You are seen on a peer level with people in classes.

AUDIENCE: Carbondale is one that has a good reputation, in fact the whole city. The campus is really spread out, but the whole city is really accessible and that typically happens in a university town.

Yes, typically. Champaign is perceived the same way. Champaign was one of the original towns to have lift equipped busses on the main line. Okay we're doing real good. What else is important to independent living? Is there anything else you can think of? Are we residential or non-residential? What is the difference? Some people get the idea when you say you are a center for independent living that we have all these special projects here. They come to see how we help people spend the day. But the whole idea is to get them out of the nursing homes and teach them day to day living. When we were at the idea stage for starting IMPACT, people would ask me, "Where are they going to build that center for independent living?" So, we are non-residential. We don't have a housing project that is a major part of what we do. In our case, we don't even have it as a minor project other than housing referral. Non-residential is an important part of the independent living philosophy or independent living concept. What does the idea of being community based mean? Community based for independent living, what does that mean? What is the alternative?

AUDIENCE: DORS is a state agency.

There are some that think a state agency can provide the services we provide. But again, the independent living philosophy says it should be people in the community who are aware of that community and known in that community. Yes, control should be vested in the community, not at the state capitol. Local people with disabilities should be the leaders of the independent living centers and the independent living movement. It shouldn't be a state agency that is a big step away from the community. Community based is an important part. What does dignity have to do with centers? What are some things that go on about disability that don't really consider dignity as important?

AUDIENCE: Telethons! Being one of Jerry's kids.

Yes, how patronizing is that? They typically want to make people feel sorry for those who have a disability. Again, that runs against the grain of what we do, which is to say we are people who deserve dignity. We don't deserve to be patronized. We are people just trying to make it like everybody else. We are just people, and the whole approach of telethons is that we are some medical entity that needs to be cured. Their method of raising money typically offers no dignity to people. It doesn't fit with what we do. What about integration? That's an important part of what we do. What does that mean?

AUDIENCE: Being a part of the community.

That's right, being a part of the community like everybody else and not being separated out because you have a disability in any way, shape, or form. Whether it's school, jobs, voting, social life, recreation, or being able to be a part of the community. Anything else we are missing?

AUDIENCE: Sometimes we're considered brave. Right. Sometimes that's as harmful as the opposite of that. I always take that back to the idea that people expect very little of us, so if you do anything that's above and beyond their expectations, then you are brave. Bravery is a going above and beyond expectations. They think we are brave if we go out past the back porch. How brave we are to be seen out in the world. That's a good point. That's another thing we have to fight against, that we're not special. Anything else? There are a couple more things I am thinking about. What is the role of empowerment? Our total mission is to empower the disempowered. Empower people who have a disability to take responsibility. They're taking control of their own life and taking control of what services they think are appropriate here. It's not up to us to decide for people what services are appropriate to them. They really need to come in here and set their own agenda in terms of what services they feel are appropriate. We may need to be there to question sometimes, but sometimes maybe not. It's really up to them to make a determination as to what services they feel are appropriate, and it's not up to us to force any services on anyone. They are the empowered person. One of the traditional concepts when you think about it is case management with case managers. The true case manager should be the person with the disability not the "professional." If you really look at independent living as a truth philosophically, that person should be empowered and have the knowledge to make those decisions. We may be able to help give them that knowledge, but then it's up to them. People need to be empowered to make their own decisions about their own life. Anything else? There's one more thing I'm thinking of that's a key concept to independent living. Do we serve a single disability? No. Cross disability is another important concept. No particular disability has any higher priority in a center for independent living than any other disability. All of these disabilities are equally important. We try to serve based on need and we try to serve all disabilities in all ways. We need to have people with a variety of disabilities on staff to do that, so cross disabilities is another key concept. So basically what we have talked about today was the independent living philosophy. We're looking at a philosophy which empowers people with disabilities, and peer counseling is a part of it. It's people developing the skills to learn to manage and cope with their own life and to be their own advocates. As an agency we work in a systemic advocacy way to do community services, systemic advocacy, technical assistance, public awareness and all those types of things. Integration is a key concept. Cross disability is very important. Disability rights. We haven't talked much about that. To pass legislation which is integrative in nature; legislation which helps to integrate people with disabilities. The Americans with Disabilities Act is the best example we've got, or will probably ever have, in terms of integrating people with disabilities. The Environmental Barriers Act promotes disability rights. CHIP, Comprehensive Health Insurance Plan, in Illinois is one of the issues we worked to get passed. Again, we are non-residential; we are not a residential operation. We talked about consumer control and service delivery approach and how we are an organization which is consumer controlled. By state and federal law we are required to have a majority of our Board of Directors be people with disabilities. There have been times in the past when that has been really important. Having experienced discrimination and prejudice is really important. It's an important approach in and of itself. There have been times when issues have arisen in this organization and there were questions of advocacy when having disabled persons fill the majority of positions on our board won the day, and we did some things in the past because of that. If we had a typical board like the Easter Seals where there's a lot of business people, it would have been a whole different situation. That sets us off and makes us very different from Easter Seals, ARC, and those kinds of agencies, that the majority of our Board Members will always be people who have some kind of disability. And the important part being that they have experienced the prejudice and discrimination that comes with having a disability, and always having that mentality as one of the guiding forces of the Board is really important. With consumer control and consumers directing their own service delivery program, it is important that the majority of our staff are persons with disabilities. I am occasionally shocked that other CILs find this issue less important than the board; both to me are critical. The majority of our staff is always going to be people who are disabled, and I think at our board level we have 18 Board members and about 12 people have disabilities, and on staff we have somewhere around 22 people and about 14 or 15 are people with disabilities. So that's another way we are consumer controlled and again, being community based, these are people who come out of this community. I think one of the reasons we've done so well with the City of Alton is that we're community people. We've done well in Alton because the people who approached the city of Alton were known to those people. One of our weaknesses has been when we've attempted to go to other communities and try to get them to become more accessible and work with us, we sent the wrong people. We sent people who didn't live and vote there, and one of our objectives over the next year or so will be to get people involved in their own communities. When you vote somewhere, that carries a lot of weight and elected officials listen to that. We come in as outsiders into Edwardsville, Granite City, Bethalto, or Wood River, and we don't vote in those places, so one of the changes we're going to make is to try and get more involved in that way. So in terms of philosophy, are there any questions? Any questions or comments or further additions? One of the other things that plays a big role in terms of how attitudes develop is language. One other thing before we get to language is what is a disability? How do you define disability? That's another thing which is important in what we do here. What is a disability?

AUDIENCE: The conditions we have to live with and we can have recourse to overcome disabilities.

What do you mean by conditions?

AUDIENCE: Bodily conditions. Like losing your sight or hearing. Things like that.

That is a definition typically used. A disability is an impairment that results in one or more major life activities being restricted in some way. Those life activities being seeing, hearing, learning, walking, or talking, all those sort of things. So disabilities start with an impairment, and if you just have an impairment that does not result in any life function being affected, it is not a disability but an impairment. But if a major life activity is affected, then it becomes a disability. I think we will bounce that definition around a little bit because I don't believe that's a very good definition in terms of what we do and believe. That definition implies that to make life better you deal with the impairment. That doesn't say anything about the environment or discrimination or all that sort of stuff. So it is important that we, at some point along the line, define disability, and that's the definition generally used. Now, just to get to the issue of language for a second, what's the importance of the role of language in what we do? A couple of years ago I wrote an article about language in our newsletter. That was probably before most of you were here and probably no one read it. What is the role of language in perpetuating the myths about people with disabilities? What is the attitude if you read the paper and the paper talks about a spinal cord injury victim? What does that mean? I think language choices have been sort of medical in nature and it has reinforced the negative stereotypes about people with disabilities. I think we've got the people of the Alton Telegraph fairly well sensitized and they've changed the way they write stories around here. They talk about persons with disabilities. We will talk about the idea that somehow "disability" became the word as opposed to "handicapped" or "crippled." We will talk about how that developed. But language is critical and if we can educate people about language (and some of the better publications are attempting to do just that) in terms of what the proper words are to use when you talk about a person with a disability. Emphasizing the person when you talk about a person with a disability, not victims, not sufferers, not patients, etc. So language has played an important role in how people see us. If you are an employer and you read about spinal cord injury patients, what are the chances you are going to hire somebody who happens to have a spinal cord injury. What's your view of that person? You think of that person as somebody who's sick. We shouldn't underestimate the importance of our language to determine the whole idea about disabilities and reinforcing the negative aspects about disabilities. I have some information coming about the different things I've talked about, World War II, etc., and I've ordered some stuff from the Paralyzed Veterans about their history and we will start with that next time. We may go into a little more detail about some of these key concepts that are related to independent living and we will also start talking about the World War II era. To finish off here today, the top of the paper I gave you says something about independent living in America, FDR to ADA. Does anyone have any idea what FDR to ADA means? What's the significance of FDR? I just wanted to make sure that everyone knew what FDR and ADA was. So, we'll just wrap it up for the day and we will meet again in two more weeks. Does anyone have any final questions? Ok. See you in two weeks.

CLASS II

I would like to welcome everyone to class number two on independent living, where we're talking about the philosophy and the history of independent living. To recap rather quickly what we talked about two weeks ago, does anyone remember some of the things we talked about? Can someone refresh our memory about what independent living is? That was our main discussion. What is independent living? We discussed the key concepts associated with independent living. Can anyone refresh our memory of what independent living is? Any volunteers?

AUDIENCE: Controlling your own life.

Right, that's the main conclusion. Independent living is being in control of your own life and making your own decisions about your life. I think that's an important idea for all people with all disabilities, that the major thing they want in their life is to be in control of their own life. Not to have their lives controlled professionals, family, or by other people. That's basically the heart and sole of independent living, being in control of your own life, not to be confused with being able to do things for yourself. There is a definite distinction between the two. Often times depending upon another person to do things for you can make you more independent. If, for instance, it takes you an hour to put your shoes on and somebody can help you do that in three minutes, maybe you're better off being helped to have your shoes put on. So just don't confuse the two; independent living is not directly associated with being able to do things for yourself. Just to follow up on that, what would you say independent living and the independent living movement were a response to? There are a lot of different responses to disability including medical responses to disability and rehabilitation responses. What sets independent living apart from those and other responses to disability in terms of a discipline or an approach to disability issues? What are we responding to when we're talking about independent living? What is it in response to in the community? Ideas? Anytime you have a social movement like an independent living movement it's because conditions exist in a society which bring that about. What are those conditions that exist in a community which would result in an independent living movement?

AUDIENCE: Society's attitudes.

One of the things that exist is stereotypes about people with disabilities. People don't want to be categorize improperly, so you have a response to that. What are some of the other things? What other kind of things go on? Discrimination. If you have a community that really discriminates flagrantly against people who are disabled, that's what the independent living movement is a response to. We are saying we should not be excluded from participating in our communities. People grow up with, what I think of as archaic notions about what it means to have a disability. They're not based on fact, but are just notions people have or ideas people have. Another thing I think of is the prejudice people have. It's almost inbred. Prejudices regarding people who are disabled and often I think of anecdotal information. Does anybody know what anecdotal information is? It's really not factual information. It's, "my grandmother was in a wheelchair," these are the things I noticed about her. People tend to take that specific anecdotal information and assume it's true generally. So their experience with disability may be very limited, but they generalize what they think is true to everybody. So really the independent living movement, as a movement of people who are wanting to gain control of their own lives, was a response to things like prejudice, discrimination, job discrimination, archaic notions, and the public's ideas about what it means to have a disability. A possible response to that is the independent living movement that we're involved in where we say, "It's okay to have a disability". You know, we don't have to apologize for the fact that we have a disability. Disabilities are permanent, short of some great cure or whatever. We're people who have disabilities and we always will. So we need to deal with that and come to grips with that, not based on society's attitudes, but rather on the basis that we can lead full and productive lives. We need to think and say, "it's okay." It doesn't mean we can't participate fully in our community. I think there's ample evidence, and everybody in this room in essence proves it, that you can have a disability and you can lead a life that is full and productive, participate in your community, be leaders in your community, and be involved in your community as fully participating people even though barriers exist. Maybe we can't do everything, but it's not just because we have a disability, but because society refuses to respond to the fact we have a disability and to open up and become accessible. The whole push of the independent living movement, probably the most important thing we've accomplished, is the Americans with Disabilities Act. It will respond to that, which will be an effort by law to remove those barriers. So hopefully barriers to employment will come down, transportation, telecommunications, public accommodations, and all those things are included in the Americans with Disabilities Act. That's really a result of the fact that people with disabilities have taken a lead and have responded to the fact that we are not included routinely in American life. The response that we have made is to be a social movement, to be strong, to expect our civil rights, and to pursue those aggressively. Without the independent living movement, I'm sure there would be no ADA. Now that's an organized movement we're a part of. There can be different responses from individuals, obviously. One of the things that is typical as a response to prejudice and those things, is when people try to pass as not having a disability. We talked about that a little bit last time as I recall. Somebody refresh our memory as to it means to pass. We've heard of black people who can pass as white because there's such a stigma to being black that if it's not known you're black, your options in society will be greater if you're perceived as being white. It's not that black is less capable or anything of that sort, it's that there's a perception that if you're black you are less capable. It's a very different situation. We're saying the same is true of people who are disabled. There's a perception that if you have a disability you're less capable of taking care of your own life, etc. Can someone give me some examples of passing? Maybe you've had some personal experiences where you've passed as a person not perceived to have a disability.

AUDIENCE: Comments unclear.

That's a good example. They perceived her as not being disabled, whether she was trying to project that or not. Any other comments about that?

AUDIENCE: Just hiding your disability.

Right, so they're not going to go around telling the world they have a disability because they will be treated differently. That's a good example. Anything else? Everything you're saying, these are really good points. I think there are some real hard perceptions to fight, but I think again our message here is to... appear independent or to be independent and to really be truly in control of your life. Because there's definitely a downside to trying to pass as being independent when really you're not. Rich and I have talked about this over the years many times. We have a board member whom I've talked to about this with a different perspective who has a visual impairment. He was encouraged to never let anyone know he had a visual impairment. He talked about how it can be very limiting to you because, for example, he had some thoughts about furthering his education and doing some other things like that, but he couldn't pass in those situations so he didn't do it. It would have required either a reader or some real large print for him, and then he would have had to admit that he had a disability. So subsequently he never pursued that. I think that any disability you can think of, whether it's walking long distances or whatever, if you attempt to pass as a person who doesn't have a disability, it's really hard on you. I think that probably the whole post polio syndrome is akin to that. The post polio syndrome is basically that people overused the remaining muscles they had to the point that those muscles became fatigued, so those people sort of wore themselves out, often trying to pass as individuals who were not disabled. This is an oversimplification, however, often times in trying to pass they expend so much energy that they wear themselves out, and almost wore their bodies out. And now they're experiencing great weakness and pain and they're paying for having tried to pass in the long run. Now, probably the most interesting person in history that really made the effort to pass as a person who was not perceived as a person with a disability was Franklin D. Roosevelt. When we passed out the outline on this course we had FDR to ADA and now you know FDR is Franklin D. Roosevelt. I was wrongly under the impression he became disabled around World War II. In fact, I have this book that Cathy Contarino took out of the library for me called FDR'S Splendid Deception. It's really good reading and it has to do with the fact that FDR essentially deceived the world, and the world thought that was okay in terms of him being perceived as a person with no disability. FDR actually contracted polio in 1921. As you know, he didn't have a mild case of polio, but was very severely disabled to the extent that he could not walk without assistance and probably was best off spending his time in a wheelchair. In private he spent a lot of his time in a wheelchair, but not in public. After he got polio, and I will talk about him in a context that it would have been great if he would have approached his life differently, if that would have been possible. When he first had polio, he had already been involved in politics. He had been in the New York state legislature, and at the time was serving in some capacity like Secretary of Navy or Assistant Secretary of Navy, or something of that sort. That was 1921. He spent a number of years in Warm Springs, Georgia, the rehabilitation center which became a polio center later on. In fact the Roosevelt family purchased it. He spent a lot of his time there trying to gain as much of the physical strength and ability he had lost as possible. It was 1928 before he considered getting back in politics. I'm just going read some excerpts from this book because I think they make the point very well about his approach to try to pass as a person who does not have a disability and some of the downside of what that meant. Again, it's all outlined in this book. This first paragraph is from the time in 1928 when he was going to nominate a fellow New Yorker to a position at the Democratic Convention. It talks about his son, James Roosevelt, and they're getting ready to try to consider how he can attend this convention, yet not be perceived as somebody who is, as they called people in those days, a cripple. "James surveyed the convention hall, the old Madison Square Garden, seeking out the exits, the speaker's platform, and the location of the New York Delegation. Roosevelt was determined not to be seen in a wheelchair unless absolutely necessary, and not to be lifted upstairs in view of the public. James mapped the way this could be achieved. F.D.R. attended every session of the convention. He and James arrived early each day in order to get their seats before the arrival of the other delegates." Again, you see, they'd come in and he'd already be sitting there. You wouldn't see him coming in a wheelchair or on crutches. "Occasionally James would take his father by wheelchair to the hall entrance close to the seats of the New York Delegation so he could get as close as possible. At the door, Roosevelt's braces would be locked and he would be pulled to a standing position. With James holding one arm, and a crutch under the other, he would slowly make his way down the aisle." So, even though they were getting there very early, if somebody would happen to be there to see him, they'd see him walking in. "At times he gripped James' arm so tightly James had to concentrate to keep from crying out in pain. The effort was exhausting. The summer heat intense. A large solid oak arm chair was placed in the aisle by the New York Delegation. The chair arms provided Roosevelt with essential stability and security. Here he sat greeting friends and well wishers throughout the long dreary hours of the session. He did not leave the hall until the session had ended and the hall had cleared." So, you can see that from the very onset when he tried to come back into public life, he didn't want to be perceived as somebody who was "crippled". So he made a great effort to try to present a persona, a personal presentation of himself as somebody who was strong and confident, and not perceived as somebody with a disability. You know when I talk to my parents or anyone else about when Roosevelt was around, he was perceived as a dynamic leader, a great speaker, a great orator, and as the leader of the people of this country.

AUDIENCE: I read that even when he was photographed, he'd be photographed so that his braces weren't showing.

That's right and that point is brought out in this book. He never allowed himself to be photographed in his wheelchair in public and there probably exists only a handful of photos of Roosevelt sitting in his wheelchair. This book has some, in fact there's one on the cover of him, but he made it a point, and I think oddly enough the press in those days were agreeable. Can you imagine that today? In those days they were agreeable to overlooking the fact that he had a disability. Now, you can't imagine that happening today. He probably couldn't pull it off because of TV. Again, this was prior to TV when he was pulling all this off. But can you imagine Dan Rather allowing the President to get away with such a thing. President Reagan had a hearing aid. They wanted to focus in on that and make a big issue out of even something so small as that. But in those days, his whole attempt was to control his image as a person that was not being perceived as a disabled person and the nation, the press, and fellow politicians all went along with it, and it was really never made an issue. It was just like the country had this big deception, that they all wanted to be a part of, that said that FDR was this dynamic leader and that he was not a person with a disability. One time when it was brought out early on in one of his early campaigns when he had run for Governor in 1928, his response was that a Governor does not have to be an acrobat. Not much more was ever said about him being a person with a disability. It was just this voluntary suppression of the public psyche which wanted to perceive this dynamic person leading us out of a Depression, not some "cripple" as they called us in those days. One of the things they have in this book was the generally accepted line was that FDR had polio and was a little bit lame. He had been paralyzed but now he was recovered. He was a cured "cripple." There wasn't any question about it that he was a person with a disability. But again his perception and his deception to the country was that he didn't have a disability.

AUDIENCE: Was that just for our country or for other countries too? Did they think he would be less of a leader than the leaders of Japan or China?

Yes, I think even more so than this country. This country seems to have a little more open attitude today, and probably did in those days about disability. When we had our visitors here from Japan, I was just sort of shocked in a way about the attitude in Japan. There is no real successful push for accessibility or civil rights or anything even today. Their approach is that it's the families responsibility to take care of people with disabilities, but that's the Japanese culture.

AUDIENCE: When I was up in Chicago with IVHI there was a Japanese man there doing his internship and he said a blind person in Japan was typically taken care of by his family.

Well that doesn't surprise me, having had those visitors here. One of the things I thought was interesting in the book, and I think it probably applies to some of us who are disabled, is that Roosevelt found dressing to be a bothersome business. Normally he wore a double breasted navy blue suit throughout the day with an ordinary tie on his neck. If his dinner was to require a dinner jacket, he simply exchanged his tie for a black bow tie and went as he was. Its not like he went home and put on a tuxedo. He sort of made that small change to not have to go through changing his clothes. I do that all the time. Sometimes I get up on a Saturday morning when I would like to dress casually, but I have to do something Saturday night, so I just go ahead and dress for Saturday night. Maybe you do that, maybe you don't. Anyway, FDR was involved in the March of Dimes. He lent his name to the March of Dimes and it talks about how the March of Dimes came to be. Probably most of you don't remember Eddie Cantor; I barely remember him myself. It says that FDR was never hesitant about investing his name and position in the service of a good cause. The President was a very popular man. This is all before my time, by the way. At this time they were trying to raise funds for a cure for polio. Eddie Cantor, the radio and Vaudeville entertainer, suggested that an appeal be made asking people to send in money to FDR in the White House to be used in the fight against polio, and this is a quote, "Call it the march of dimes," he said. That was really the start of the March of Dimes, and it indicates in here that by the late 1950's they were raising 50 million dollars a year to find a cure for polio. I guess it was 1958 or so when they found the vaccine? 1955? They found the vaccine as a result of a major investment that the country made, and basically through the March of Dimes, as it was called, people giving their dimes to cure polio. It was really after World War II that the vaccine was discovered. That was after Roosevelt's death. It's sort of funny some of the ironies that come out about after Roosevelt's death. When he was in the White House, he was elected president four times, more than any other President. You can't even be elected four times any more. But he was elected President four times, and when he would campaign he would only allow himself to be seen in photographs taken either while standing or while sitting in the back seat of an open convertible. He did a lot of his campaigning through the streets in the back seat of an open convertible. When he died, which was in his final term, they had ramped the White House, they had ramped his home, and a number of those kinds of places. And when he died they took all those ramps out. It was not odd for him to go to a city and they would build ramps all over the city, wherever he had to go, or else he would just be seen from his car. Everywhere he would go when he would leave they would take the ramps out, oddly enough. Can you imagine how far along we would be if he had taken a different approach and said, "Let's make this accessible when I come there." As popular as he was, if some accessibility mandate had gone out, and this was probably prior to accessibility being a concept, but if they had left those accessibility features in, we might not need ADA today. We'd be way down the road at least towards accessibility in those terms. So when he died one of the ironies was that he had taken us into World War II with his great speech about the attack on Pearl Harbor, "Yesterday, a day that will live in infamy". He took us into World War II and after World War II a significant number of people came home with disabilities. He was a big supporter of the war effort and the soldiers. Whenever they took out all those ramps, it made it impossible for those vets coming home with disabilities using wheelchairs to visit the very sites that were his. Even the church that he went to had been ramped and whenever he was gone, when he died, they took the ramps out. So it was sort of an irony that he did not make a commitment to really making an accessible world, but rather just trying to appear as minimally disabled as possible. Make as little of an issue as possible. Very interesting book. One of the things we talked about was that the period after World War II was significant in the independent living movement with the vets coming home. This is a medical question really. What was significant after World War II about people becoming disabled that wasn't true before? Why all of a sudden in World War II? Why not World War I? Why not in between the wars? What occurred between those times that makes World War II a more significant time in the independent living movement? Any thoughts or ideas? The main reason they attribute to people surviving disabilities was the development of antibiotics. People were really dying from infections, whether it was people with polio or people with spinal cord injuries, they would die from infections rather than the disability itself; that was sort of secondary. Many of us carry bladder infections, but we can get medicine if it flares up. Immediately after the war, one of the things that was established was the Paralyzed Veterans of America, and all of a sudden veterans were coming home with disabilities. Some were paralyzed and using wheelchairs. What do you think about that experience? Why was that unique? All of a sudden you have veterans coming home paralyzed, why would that be the start, or one of the starts, of the independent living movement? The main reason I think can be attributed to the fact that these people coming home had gone and given significantly for the country. In terms of going to war and coming home disabled, they didn't want to accept not being able to participate in the community that they fought for. I think it didn't make any sense to them at that time. So because of medical advances we have people who are living and coming home as war heros. Then after all of that dies down you've got veterans who can't get around in their own community, who can't go across the street, and who can't get a job. So I think that's probably part of the impetus for the establishment of the Paralyzed Veterans of America. These veterans had known what it was like to live a full and productive life, as opposed to people who had survived a disability prior to that, who were congenitally disabled, were much less likely to have ever experienced a full, productive life. So I think that was really an important part, a new view from the perspective of people with disabilities, and a really important time. The Paralyzed Veterans of America was established and influenced by paralyzed veterans. It wasn't the good people in the society establishing it for them, it was people with disabilities taking control of their own lives and establishing that organization. One of the things I find interesting after World War II was that in our own state, the University of Illinois was one of the first campuses to become accessible. The reason it became accessible was that veterans were coming home looking for a place to go to college. The University of Illinois started a program in 1947. That's when they made a commitment to becoming an accessible campus, way back then. I think they are really significant, given the fact that there was a guy on campus there who been in the infantry in the Army, he had no disability, and his name was Tim Nugent. His name is a very significant name in the history of the accessibility standards of this country. He became the director of a program that was set up to welcome disabled people to the University of Illinois. One of the big barriers to getting a job was having a skill, and this was probably the first thing people thought of. They figured people could go to college and obviously they could get a degree and they could get a sedentary job and they would be employable. So the University of Illinois was one of the initial campuses, if not the initial campus, to begin becoming accessible to people with disabilities. Does anyone have any idea what some of the other things in terms of accessibility and disabled people the University of Illinois became famous for after the war?

AUDIENCE: The policy that you couldn't have an attendant help you and you had to do everything yourself?

They did have a policy to that affect and that relates to what I am saying, but that's not the exact answer I am looking for. Does anybody know what kind of activities they had at the college? Well, the answer is that U of I became famous almost immediately for its wheelchair athletics. In 1947 or 1948 they established wheelchair basketball teams and they were the first in the country. Professor Tim Nugent established something like a wheelchair basketball association. I'm not sure if that is the right language or not. Let me just read from an article out of Paraplegia News about Tim Nugent. This was written about the time he retired in 1985. "During 1947 to 1949 Nugent established the world's first higher education program for severely disabled students. Most of them were wounded WWII veterans. The program became a model for others in the United Stated and abroad." Here this guy comes back from WWII and he is an infantryman. He took action about his fellow soldiers who were coming back disabled. In 1948 he founded Delta Sigma fraternity, and in 1949 he organized the nations first college chartered basketball team, the Giz Kids, coaching them into many subsequent national championships. He established the National Wheelchair Basketball Association for which he served as national commissioner from 1949 to 1973. He also introduced the sport of wheelchair football. But the main point to be made is that the original standards for accessibility were the ANSI standards developed in 1961, and Tim Nugent was the chair of the commission that established those standards. An important thing you see in those early standards is that they were geared toward people who were wheelchair athletes. Even the slope of a ramp was developed with a basketball player in mind. A 1 to 12 ramp is a fairly steep ramp. They didn't give very much consideration, for example, as to how much pull a door should require to open. These muscular guys in wheelchairs popping up and down curbs and stuff did not need to consider that. But that's the people the original standards were modeled after, and that was a good start. But they definitely needed to be re-done. Current standards are much broader and encompass a much broader definition to what it means to have a disability. I remember my first experience with those old standards. It's sort of odd. Back in the early 1970's in Alton we had this little committee that was going to make Alton accessible. We got a piece of legislation passed that if you built a new building in Alton it had to comply with the ANSI Standards. I remember the first building that was built. It was built with the standards, no problem right? They had me go in to see how useful this was. I am obviously not Mr. Athlete. First, they had these little round knobs on the doors. It wasn't a standard to have lever operated doors. So here were these wonderful standards for accessibility, and I can't even open the door to get in. I tried to get into the bathroom and the bathroom had this same round knob. I felt so odd that we had passed this law. We had these standards and this was going to be accessibility in Alton. There was a ramp, but I needed a push to get up the ramp to get into the building. This was accessibility. This was what the definition of what accessibility was. I will never forget how odd an experience that was, to have worked to pass this law and establish these standards, and not be able to use them, so I guess I'm left out. A little later in life, as my thinking grew wiser, I realized the early standards were what needed to be changed. I was not the problem, the standards were. The standards were eventually significantly changed. It was an excellent start towards accessibility, but it was not the end all answer to our problems and issues of accessibility. Tim Nugent and the University of Illinois I think are significant. Illinois does play a fairly significant role in the history of independent living, particularly as defined in the accessibility issues. Another thing I did back in 1973 was when I was finishing my degree at SIUE. I sent out letters looking into graduate school. One of the letters I sent was to the University of Illinois to their program. They basically sent me back a letter saying in so many words that if you can't physically take care of yourself on campus you might as well hang it up. I kept that letter for the longest time and wish I still had it. I hope they've changed since then, but their approach was physical independence. That is what was important, physical independence. I think to the point that you weren't even allowed to have someone push you when you were on campus in a wheelchair. They were very insistent about that sort of stuff. I assume that was probably part of Tim Nugent's philosophy. But again, he was certainly a pioneer and a leader in beginning to make the world accessible and opening up the world so that some beginning standards for accessibility were being developed. Does anyone have any questions, comments or thoughts about this segment of the independent living history? How well they're doing today I don't know, but I think they have an interesting history as part of the independent living movement. At least the original concept of accessibility probably started right there.

AUDIENCE: If that's still true, it's to their detriment. They should change.

AUDIENCE: I wonder why during FDR's time they had no special provisions for public ramps. I didn't realize they lacked those things. But he had his own system set up. What took so long to recognize that need?

I guess it was his response to the issue of prejudice in society. He just wanted to pass and not make it a social movement like a civil rights movement. It would have been great if he would have done that. FDR is identified as the president who probably did more for social programs and the New Deal than anybody. But unfortunately he didn't make accessibility and disability rights high on his agenda. Any other comments or questions? I find this interesting and would encourage you to take a look at that book. I read it pretty quickly but it makes the point that what an amazing thing it was to be able to hide the fact that you have a disability. If you ask people about Roosevelt, they don't say he was that guy in a wheelchair that did this or that. He was that voice over the radio that had those fireside chats with that booming voice that pulled us out of the depression and got us into WWII. I find that quite interesting. In our next class we're going to go into more of the polio epidemic and the organization that became sort of the network that promoted independent living amongst people who had polio. The publication became known as the Rehabilitation Gazette published by Gini Laurie, who was probably the grandmother of the independent living movement. The individual that is identified as the beginner, the first person, the starter of the independent living movement was Ed Roberts. He started the first CIL, a program similar to ours in Berkeley. He was sort of weaned on the publications that pre-dated the Rehabilitation Gazette. We have some of the original copies which were called Toomie J. Gazette. They came out of Cleveland, Ohio. We have issues dating back to 1962 here, and we're going to go through some of those and talk about how amazing it is that in 1962 there was a publication which was not for disabled people, but by disabled people. It was disabled people providing peer counseling through this newsletter. Next week we'll be focusing on that. Another thing I would like to accomplish in this class is to think about a decent definition of disability. We talked last week about disability as an impairment that limits some major like functions. But that really does not fit independent living and what we do. Because what we do is really to fight prejudice, discrimination, stereotypes, and those perceptions. We take the approach that our limitations are a result of people's perceptions of us. So I have my ideas of what a definition is, but as we go through this class I hope that we can come to some idea about a definition of disability that really fits what we do. Having said that, if there aren't any other questions or comments we'll wrap it up for the day. Anything else? Comments, questions? We'll see you next week.

CLASS III

Let's do a little recapping of our last class where we talked mainly about FDR how he was able to actually manage his disability while he was president so he wasn't perceived as a person with a disability. We talked about the book FDR's Splendid Deception, which I encourage you to read when you get a chance. At the end of this class or as we go through this class I will be coming up with a bibliography which would be good readings for you to get an overview of the history of the independent living movement. After we have these classes I typically ask Jan what she thought of them and she always says nice things about the classes. With the last one I asked her what she thought about it and she thought it was good. She said she liked thinking about what it would be like if Roosevelt had really taken accessibility as an important issue and had pushed the issue of accessibility. And really made it a priority for him and his administration to promote an accessible environment. That made me think about, say, 20 years from today, I hope there will not be some people sitting in this classroom who say, "Boy, those people were here when ADA was passed, they had a marvelous opportunity to change the world, and they didn't do anything." So that sort of brings home to me... that I think it's really important that we are living in a significant time historically for people with disabilities and their rights as citizens. I hope our legacy is not that ADA sort of came and went and this community didn't do anything about it. I hope that people 20 years from now will be saying we really made a difference. Back in 1991 when ADA was passed you should have seen this community then. Maybe we can make some significant changes. I think we ought to make that a priority of ours so that we don't leave a legacy that says we really didn't do what we had a moral responsibility to do, and that's to make sure this community complies with the regulations for the Americans With Disabilities Act. I think it also speaks to the fact that in 1977 when the regulations were passed for the civil rights legislation for that time, Setion 504 of the Rehab Act, I don't think there's any evidence anything significant happened. There was legislation that was intended to mainstream people into the schools and schools were required to be made more accessible and that just hasn't happened. There wasn't anybody here then, but we're here now, and I think we have a responsibility to make sure that we not only serve people with disabilities, but that we also truly work to open this community up. The Americans With Disabilities Act is essentially the same language of the Civil Rights Act of 1964 which is identified as the legislation passed for black people. We're that much behind them in their movement. Their act was passed in 1964 and we finally got ours 27 years later. So I hope that we as an agency take that seriously and go to this community and try to change it to make it more open and accessible. The time period we're supposed to be talking about today is the 1950's. I think we'll be able to talk about the 1950's and the 1960's simply because not much happened in the 1960's that was very relevant. It wasn't a very critical time in the independent living movement in terms of development, so hopefully we'll be able to talk about both of those. I think it's critical that we talk pretty extensively about the philosophy of independent living. We really have not done that yet and I really want to focus on that because it is an important part of this class and the whole philosophy associated with the independent living movement. If we can combine two of these classes into one, it would give us more time to address the whole philosophy that's associated with the Independent Living Movement. We mentioned before that independent living is actually identified as having started in Berkeley, California in the early 1970's. I wanted to read something to you out of a publication that's titled A People's History of The Independent Living Movement. It is by a person named Chavel Willie Levy, whoever in the world that is. I believe we got this through the RTC center in Houston, Texas, the ILRU, which is the independent living program that Cathy and I went to for training. They do a lot of publications, but I wanted to read this to you. "It's hard to fix an exact date to the birth of the IL movement. Many say the movement began on a day in 1962 when a man named Ed Roberts enrolled at the University of California at Berkeley. For some reasons that will soon become obvious, Roberts is universally acknowledged as the father of the independent living movement. Some are quick to point out however that if Roberts is the father of the movement, Mary Switzer and Gini Laurie are its grandmothers". I would just reiterate that in my opinion this is very true. Mary Switzer is much more associated with the vocational rehabilitation programs, so we're not really going to be talking about her. But Gini Laurie plays the key role in the history of the independent living movement and the development of it. Ed Roberts was actually associated with Gini Laurie. Ed Roberts didn't just wake up one day and say, "I'm going to start an Independent Living Center." He had to have been sort of nurtured along to that point where in the early 1970's he said, "This isn't right, we need to change this." So we're going to talk about Gini Laurie. Gini Laurie is the one person I know in the movement who is a close personal friend of mine. Rich knew her fairly well. She lived in St. Louis at the time I met her, but she had previously lived in Ohio. I see Paul shaking his head. I think he knows who Gini Laurie was. She's been dead for probably about a year and a half or so. She died almost immediately after the last international post-polio conference. I met her in the early to mid-1970's when I first moved to St. Louis. She probably was the one person in my life, outside of my family, to whom I just sort of said, "Whatever you want, you got." If she asked me to do something that I could possibly do, I would do it. It was almost like giving her a blank check because I had that much respect for her and what she had done regarding the independent living movement. She had some brothers and sisters who were affected by polio to the extent that I think two or three of her brothers or sisters died of polio. When they were first affected by polio she began volunteering in Ohio in the polio ward. She became, as she would say, "the arms and legs" of her brothers and sisters and the people at the hospital who had polio. So, she got involved due to a personal commitment. I think it's important that once her brothers and sisters died, she continued to volunteer at the polio center in the Ohio area. In the last class we talked about the fact that in 1955 the polio virus was developed and polio was essentially as a medical problem eradicated. So, what happened from that was there were no new people coming to the polio centers around the country and they were starting to get to the point where they were ready to leave the hospitals. Somewhere around 1958 Gini Laurie was still volunteering at the polio center in Ohio and they began wanting to keep in contact with each other. People had left the polio wards and somehow there was a loose communication amongst them from around the country. So they asked Gini Laurie to edit a newsletter because they had the addresses of all these people with polio and they wanted people to be able to communicate with each other. So in 1958 she started a newsletter which at that time was called the Toomie J. Gazette. So, it became the Toomie J. Gazette and that was their publication. This started in 1958 and in 1958 I had no idea what disability was about and maybe some of you did and some of you didn't that far back. This is a 1967 issue but it really is the same in all of them. "Toomie J. Gazette is published once a year. The writers are the severely disabled readers." Again, that's something that makes this absolutely unique in the field of literature regarding disability. It's not people giving counseling or people with PHD's in psychology who are writing these articles. The articles are written by people with disabilities. The whole idea was that if John Jones has learned some skill he can write about it in this magazine, and other people who will read it can deal with it in managing their life. These publications are filled with success stories as to what people with polio were doing with their lives. These are not articles of people sitting around moaning and groaning about, "Oh, I have polio and I can't do anything." These are stories about people going to college, people getting jobs, people doing jobs in the strangest ways. Gini was a very down to earth, grass roots kind of person. She talks about the volunteers. She has two categories of volunteers. One was horizontal, which were literally people who had polio who were on stretchers; that's how she described them. The able-bodied volunteers were the verticals. So she had horizontal and vertical volunteers. That's really how she refers to them in here in terms of being volunteers. So she starts this little network and newsletter so that people who had polio could start to communicate. Eventually it grew into an international journal called the Rehabilitation Gazette. This is the 1978 issue which was the twenty year issue. It became a publication that literally went around the world. I remember the first time I saw it was in the early 1970's and it was so different from a lot of the publications that I had been reading. I think what it was intended to do in those days was if you had polio it would raise your expectations as to what was possible. There was probably nothing more important than to raise your expectations as to what's possible. If you think of how people come in to you, and they're looking for services, part of the issue typically is that they've bought into the expectations of society. Society expects that you can't work, that you can't take care of yourself, that you're less than capable, and you're not a valuable person. What jumped out of all these publications of Gini Laurie was that you are a valuable person, that you have skills. That you can develop the ability to manage your life and to cope with your life, and, promoting an accessible environment. That's all the things that are really the heart of the independent living movement today. That's what jumped out from these pages in 1958. People can read these journals and really identify with other people doing things, and catch on to that and really raise their own level of ability. And what they would expect of themselves in terms of being able to live a full and productive life. We talk about the independent living movement being associated with Ed Roberts in the early 1970's. This is the 1967 issue and there is a picture of Ed Roberts in here when he was in college at Berkeley, California. I would encourage you, if you do nothing else or read nothing else, to pick some of these up and read them. Again, this is the 1967 issue of the Toomie J. Gazette entitled "Higher Education and Employment." That was sort of the focus of this issue. There's a picture of Ed Roberts in here laying on his back with a mouth stick. Ed Roberts is the guy who was disabled by polio and could only breath with a respirator. You know, you hear issues about if you're on a respirator is life worth living. Well, Ed Roberts started out on a respirator when he was disabled by polio and has lived on one ever since. That meant an iron lung, I assume. Rich may know more about that than I do. This is the guy when you talk about living a quality life there are lots of stories around about Ed Roberts. The one I particularly like is when he became the director of the state Division of Vocational Rehabilitation, which is equivalent to DORS in this state. The funny thing is that they turned him down as a client as being too severely disabled to ever work when he first applied. He essentially created a whole movement. It mentions in here how they got funded to go to college. There was a guy named John Hessler and apparently one other. You don't hear much about it anybody but Ed, but all three students received support through California's Aid to the Needy Disabled. This is to cover the $350 per month room and board charges at the hospital. So while they were going to college they were living in a hospital on campus. They weren't allowed to live in the housing available to other students. They were living segregated lives in a hospital. These guys living in that situation is what started the whole independent living movement. Ed Roberts and John Hessler said in essence, "This is nuts. We don't have to live here. We're not in need of medical things. We're just in need of Attended services." So in this publication there is a situation back in 1967 on a college campus and they were living this segregated life from everybody else. That was really the roots of the independent living movement and here it appears in Gini Laurie's publication. So, we identify again with Gini Laurie as being the grandmother of the independent living movement, and she always referred to herself as "the glue that held the polios together." That was her sort of self-definition. This particular publication is her 1978 issue, and again I encourage you to read this. There's an article in here entitled "Twenty Years In The Gazette House" by Gini Laurie. Again, this is a long time ago, but I would like to read a quote from here. "When the patients left the hospital they kept in touch and came to parties at our house. Many became our closest friends. We ramped our house and built a small swimming pool with a hydraulic lift and heated it to a good warm temperature. Eventually we had annual get togethers. The Toomie Alumni picnics at our house and the picnics grew to include not only old polios but an assortment of people with all disabilities in Northeastern Ohio." She had what she called an Annual LSD party, that was a lick, stick, and dunk party. They really used that party time to get out the issues of the Gazette. That would be the parties for them to come together for mailing out the Gazette. That was sort of their annual party that they would have in those days. So you have all these people with polio, severely disabled, communicating and learning. It's almost like peer counseling through the mail. It's like the pre-date of what we do, but it was done through the mail in those days and probably was just as effective a method. Disabled people were writing articles, and disabled people were reading those articles, and learning and writing their own articles and sharing information. That is why she's considered the grandmother of the independent living movement. One of the people who participated in that process was Ed Roberts. He was writing articles about his experiences in college and reading and becoming more knowledgeable about the whole independent living process and the need for people to live more normal, integrated lives. Around 1970 Gini Laurie moved back to St. Louis, and that is when I first met her. Gini was born and raised in St. Louis. One of the things we had over there (it was almost like a neighborhood) was all of these people who moved to St. Louis, all of us who were disabled, we also migrated to live within a block or so of Gini Laurie. I lived there and when I wanted to move over there I called Gini and some other people with disabilities in that community and they helped me find housing, almost like somebody would call here. It was like an early Independent Living Center but it didn't have any structure. It was just a bunch of friends in the neighborhood. Max Starkloff, who is now the Director of Paraquad over in St. Louis, lived in the neighborhood. There were about 5 or 6 of us who lived in yelling distance of each other and we were doing independent living stuff together, checking with each other to get housing and get Attendants, and getting to where we were all living a more full and productive life. Gini Laurie, of course, brought all of her stuff from the Gazette back to St. Louis. Talk about an amazing place to be associated with. About 2 or 3 times a year Gini Laurie would have a visitor from another country. She had visitors from Japan, England, and Australia. People would come from all around the world to see Gini Laurie because they had been reading about her in these magazines. If you had a disability and you came to this country you came to see Gini Laurie, because you read about her through the magazines. I remember meeting Ed Roberts at her house. There were some people who were integral to the development of the independent living movement, and they all came to Gini's house in those days. Early in the 1970's there was a group formed called the American Coalition of Citizens with Disabilities. It was an attempt to bring together people with various disabilities, like Independent Living Centers do today, to be advocates in Washington D.C. This was a group located in Washington D.C. and they had representatives who were deaf. In fact, their original Executive Director was a deaf man. There were blind people on the board, and a number of people with different physical disabilities. They allowed one able-bodied person to be on that first board, and the person they selected was Gini Laurie. So here in the 1970's they have this group of disabled people that were meaning to try and change the world, as we all try to do, and Gini Laurie, as she referred to herself in a joking way,w as "their token able-bodied person" on that board. So again, in terms of being a critical person to the independent living movement, Gini Laurie was definitely that and she continued to be. She tried to focus on various disabilities but never really got too far away from polio, and the fact that she was in contact with people with polio on a regular basis, she was the one who originally identified the post-polio syndrome, as it was called. This was people that would overuse their polio affected muscles who steadily became more disabled as they grew older, and it wasn't just an aging process. Gini Laurie identified it in a lot of her friends, because she knew all of these people and they were calling her and saying the same thing, It was a problem people with polio were having. Her organizations began to sponsor the International Post-Polio Conferences. Has anyone here ever gone to any of those conferences? You talk about an event to go to. This was literally an international event, and people would come from Germany, Japan, the Arabian countries, just all over the world, literally. People would come to this event who were disabled and talk about their experiences from those countries and how post-polio is affecting everybody around the world. It was nothing to see people in iron lungs. Most of the people there seemed like they had some kind of breathing machine to help them breathe. This conference attracted anywhere from two hundred to six hundred people. The last one was sort of a problem because Gini Laurie was there and everyone knew she was dying. She had throat cancer and had surgery. Originally she was not going to try to be there because she was too sick, but she was there and it was really a tribute to her. There were lots of speeches made about Gini Laurie and the testimonies of people saying what an impact she had on their lives. If I look at one person who probably had the most dramatic affect on my life, it was probably her. She never cajoled you or tried to get you to do things. She was so energetic herself and she knew so much. There was no way you could be around Gini Laurie and believe that if you had a disability you couldn't lead a productive life, because she always knew somebody more disabled that was doing more than you. It was impossible to be around her and not have that energy and that enthusiasm rub off on you. You just couldn't be around her and be a disabled person that acted like he couldn't do anything. You know, that's sort of the whole spirit of the independent living movement. It is our attempt to be role models for people. Maybe there are things people can't do, but as a general rule there's much evidence to show that you can be a person with a disability and lead a full and productive life. Maybe you won't work, but maybe its not because you can't work, but because you have no interest to work. Maybe you shouldn't work. Obviously working is not the "end all" of independent living. There are some people who are advised not to work, but all in all, in terms of being productive and in terms of participating in the community, the evidence is clear that if you learn to manage your life, you have the proper equipment, and you have the proper outlook on life and you are living in an environment that is accessible and open to all disabilities you can lead a full and productive life with a disability. What we need to be assertive about is people coming to grips with the fact that they have a disability. A disability is obviously a major factor in their life. If you do come to grips with it, and if you come to believe that, "Well yes, I have a disability, but that doesn't mean that I can't do things." I can still be a fully participating citizen. I think we need to encourage people who "beat around the bush" about that, because people are taught that. You come to learn that if you have a disability (you know that the world just isn't ready for us) and that we are subtly told every day that we don't belong, that the world doesn't have to bend for us, and all that sort of stuff. But I think we need to encourage people to believe that they don't have to accept that, and they don't have to believe what society tells us. We really have a right to carve out our own roles in the world and in this community. I know I can work and I know that I can do a good job and I can be productive as not only an employee, but as a citizen and I want to participate in this community. This is where I was born and raised, and there is no reason why I shouldn't be able to participate in this community. Probably the ultimate culmination of what we do as a movement is the American With Disabilities Act, which says exactly what we say as an organization, that it's time that employers open up their doors, and it's time that buses become accessible to people, and it's time that businesses become accessible to people, and it's time that existing businesses that are not accessible, where it's not an undo hardship, become accessible. You talk about a reflection, like a reflection of the independent living movement, the American Disabilities Act is that. Do we have any questions?

AUDIENCE- Comments unclear

Yes, an individual is going to accomplish a lot, particularly, when you have the law on your side. I have this strange opinion that everybody ought to have to have to obey the law. I have to drive down the right side of the road because that's the law. I don't see why a business should not be required to comply with the law, if the law says that they can't discriminate against people who have disabilities in the employment process. And to me, the whole reason to come up with that kind of legislation, the ultimate test as to whether they are doing a good job or not is if they have any result. If they hire some people, you know, that's the true test to me as to whether they are complying effectively with the legislation. I was just out at the Pasta House with Roland and Paul Lauschke talking about some of these issues and they are interested in being helpful to us, not just in terms of ADA, but in terms of approaching hospitals to make sure they are not discriminating against people with disabilities. Again in 1977 there was nobody here to make sure that they came in compliance with that legislation, and where we might be 14 years late in trying to get them to do some things, at least they know we are here now and trying to do that. So, that is Gini in a nut shell. It was really the polio movement that got her involved, and she became the glue that held those people together. I have these newsletter with articles written back in the early 1960's, that are more empowerment focused than most of the things we hear today from some organizations. Way back then, people working and coming up with ways to learn to manage their life with a disability. That was essentially what they were all about. Anybody have any comments? How many people here met Gini Laurie? She had been to the office a couple of times before died. It's one of the sad things about her organization. Her organization became known as GINI, Gazette International Networking Institute, and I served on the board on that organization probably for two or three years. Gini would always make sure that there was a lot of influence by people with disabilities in that organization. She was always sort of able to nudge it if it got too far in another direction. There were always these sort of professional people and these disabled people, and who was going to control this organization. Gini could always nudge it so the disabled people could have control, to the point that she had a doctor in St. Louis who was president of the board, and she subtly got him out of the way and got a guy named Jack Quigley to become president of the board. Jack Quigley was a guy with a disability, one of those guys from the neighborhood that grew up in the Gini neighborhood. She did that on purpose. The sad thing about it is she would never put it in the bylaws of her organization that the majority of the people had to be people with disabilities, like our bylaws say. So when Gini Laurie died, basically the medical people took over. The guy she appointed president left the organization and resigned and so did I. Because it became more of a medically oriented organization. I think that's to their detriment. They just didn't understand what we were saying. They didn't think it was important, so the organization really changed its focus. I don't have any association with them any more. I think that their director, a lady named Joan Headley, is really excellent, but in terms of the direction they're going to take, I think that they're planning on doing some fundraising stuff, and it was really too compromising of the philosophy of independent living and so I just really didn't have anything to do with it. Does anyone have any questions or comments about Gini and the whole movement? Rich, do you have anything to add? You lived this. Rich: Not really. I've been in contact with their support group over there. There are quite a few people over there and they are also connected with the organization. Well, we're going to jump into the 1960's. Again, there wasn't a whole lot that happened in the 1960's. In 1961 we talked about the first accessibility standards. Those were developed and available in 1961 and a lot of building codes referred to those standards in terms of, if you're building, you refer to the standards to make it accessible. You will also recall that those were very limited standards. They were geared to those basketball players at the University of Illinois, and I related the story that we had those in Alton, and every time I tried to use the building I felt stupid because the building was built in conjunction with those standards but it still wasn't really accessible to me. So, those have been amended, modified, and updated, but we have a long way to go yet. Hopefully with the standards we've developed, ADA will be even better. American National Standards Institute (ANSI) develop all kinds of standards. Again in the 1960's, the Civil Rights Act was one of the histories we associate with. I think that movement took effect in the mid-1960's with the Civil Rights Act. There was a piece of legislation passed call the Architectural Barriers Act of 1968 which was basically a piece of federal legislation that said if you are a federal agency and if you build or rent or lease any kind of building, that building has to be accessible. That was the beginning of accessibility for federal agencies themselves. The thing they did not do with that was to have any kind of enforcement. So, if you didn't comply with that there wasn't any place for it to go. You didn't really have any enforcement mechanism until the Rehab Act of 1973, which was 5 years later and they did put an enforcement mechanism in there at that time. Rich, tell me about the importance of accessibility. Let's talk about it in terms of our philosophy. Why should a building become accessible? Why should anybody be forced to become accessible? Accessibility is an important part of what we do. I'm a businessman and I say "Nuts!" to you, "I don't want to do that. Why should I have to do that?" You have to be able to make this argument because people with disabilities have a right to shop in these stores, visit your place of business, whatever, and they can't do that unless it is accessible. I think that is kind of simple. It's seems simple, but you hear that all the time. Why? Why do you think it should be done? And right at this point it is not necessarily the law. ADA will be a more broad law. In Illinois, the Environmental Barriers Act covers new construction and major renovations. I think that we really need to take a look at some of the history of this county and the history of other civil rights movements and realize that it applies to us just as much as it applies to them. So when you hear people making speeches about civil rights, we are citizens of this country and there is no reason why I can imagine that we should be second class citizens. We should be first class, in the front door with everybody else. We always hear the economic argument that it is going to cost me to be accessible. If it is brand new it won't really cost them to be accessible. The average increase in cost is 1% or something like that to be accessible. It may not be any more costly at all. Think about this economic situation. I don't know if any of you are watching the movie on the Civil War on Channel 9, which is an excellent series, but the Civil War was a movement, a war to end slavery. That was the main purpose of the war, and the Southern people in particular. Think of their economic loss. This is an economic argument. If we end slavery, my business goes downhill. That was their argument. And we will always run into instances where there is a clash between profits and rights. We just have to make a decision about what side we come down on. And that's not to say we have to be confrontive; sometimes you can convince people nicely to do things. But I encourage us to be insistent about what we have a right to. Because to me, profits are not more important than human rights. My father was in World War II, he fought for freedom. People are dying in this war for freedom. Jan's son has been in the Middle East with the 82nd Airborne, as you well know. And they talk about freedom in America, does that include us or not? We really need to think in those terms. That is what this is about. Freedom. America. If we worship anything in this country that is secular, it is freedom. Properly so. And we just need to insist that we not be excluded when they talk about freedom in this country, because it is no more important for black people or women or other minorities than it is for us. It is more difficult for us, but too bad. I guess I just encourage you to take that approach. But you really need to look at this in the context of American life. What we are fighting for is as American as can be. We're fighting for individual rights to participate. When you talk about the right to life, liberty, and the pursuit of happiness, that isn't just for some people; it is for everybody. You believe in civil rights; you have a view of the world. I encourage you to take that view of the world. This world ought to be opened up to all of us. There is a long way to go with us and all our groups, but that's the approach that we really need to pursue. We should all begin to participate, because that is what America is all about. Just to get off the subject for a second here, I hope that we welcome back the troops from the Middle East with a bang, not like we did the people in my generation who fought in Viet Nam. I hope we're really out there waving the flag. I also hope those people who are out there waving the flag, when we knock on their door and tell them they have to be accessible because it is the law, I hope they can find that flag and wave it for our freedom as much as anybody's. Because it is our freedom that is at stake and it is our freedom that ADA is about. I had the chance to really diverge from my prepared statement but I think it is really important that we do that. Does anyone have any comments?

AUDIENCE: Can you force someone to do that, like a County Courthouse? A County Courthouse, yes. If the County says they don't have the money, what do you do from there?

You tell them to go find it. You have legal advice at hand. I'm not sure what you want to do. I encourage you to do something because these people are in violation of the law. I'm not exactly sure what you're referring to, but money is always going to be an issue, and when money is an issue, and people refuse, you have the option of filing a complaint; and that's the thing that individuals should do. It would be the same way with ADA. People are right; that's what you need to do.

AUDIENCE- Then I'd have to talk to this one guy because he was showing us and the County Courthouse is not accessible, and drives around to the back door, and he won't even come out and do that because he doesn't want us to start anything. That's why he just refuses to go to the back door and help.

He will do that unless somebody forces him to do differently. I don't think there is any question that he is in violation of the law. The more complaints they get the more they're going to look at it. If you want to channel your energies and be efficient, you channel your energies into filing a complaint. You have a legal remedy available to you. You can talk to that guy until you're blue in the face, but he's not going to do anything. He's already proven that. If you file a complaint, it's not that much paper work. You fill out a few lines and send it in, and then you get them to follow up on it. That's something that amazes me to no end, is how hesitant people are to speak up and to take official action about stuff like that. We've got remedies for a lot of things that we hear people complain about. People just refuse to take official steps to remedy situations. People who have a problem with DORS, who come to us and tell us about it. There's a really easy process for them to take to do something about that and they just don't do it. So if you want to accomplish something, just take the proper steps and find out. Cathy or I could find out who you should officially complain to and people should start to do that. That's old legislation and they are long past. Just like schools and others are long past. It all should be accessible to them.

AUDIENCE- I don't think anything in Greene County is accessible; the Courthouse, the post office, the school, the high school.

If no one has ever raised the issues it never will be. Somebody has to raise those issues. Sometimes people come around, but that's more the exception than the rule.

AUDIENCE- A lot of times if you go in and talk to the person that's in charge you can get something done. I've experienced it with a large hospital. I mean their bathroom off of the x-ray room was a joke. You're up on this table and you're all filled up with all of this stuff and they're saying, "There's where you go." There are no rails in there and you can't fool around. I'm just trying to make the point that if they are doing their job to just get me on there and get me off it's just ridiculous, and they just added this multimillion dollar addition and no rails. So I wrote a letter to the administrator and one of those rooms has double rails now. He sent me a letter back and thanked me for my criticism. I didn't mean it as criticism. It's constructive criticism. It's the same thing with ramps out in front and curb cuts; they complied with that. My barber doesn't like me parking my power chair on the sidewalk out in front of his barber shop and he asked me to try to hobble in there on crutches and I mean he's a nice guy and he said, "I'm going to have to do something about this," and I said, "Yes, you sure are." Anyhow, I think he will. So I think that there are a lot of people that you can talk to and get things done, but if you meet the one that you can't talk to that's not going to do anything, then you can't back off.

AUDIENCE- I was going to mention that I've noticed situations where disabled people had a real right and everybody gets excited to see a situation that can change things for other people. But a disabled person doesn't want to bother making a complaint. But I know how you feel, because I'm not even disabled and I know I don't like to make a fuss sometimes about those things. I think that we can't keep our eyes on ourselves, it's on our future and how many other people were opening the door up for us? I think most of the disabled people I've come in contact with are always "just thinking about me." They don't want to be a problem. But seriously, what if it were your child? We as parents would do anything for our children to make life better, but we need to change our attitude. We always think we know what people will say. They'll complain and say it costs too much, and we don't know what people will do until we've done it. Cathy and I got into a situation with a school where the upstairs was accessible but the gym was not. We had to go around the building and come in. All the kids came in and they walked down about nineteen steps because I counted them. Nineteen steps down to the gym. When Spencer told me about how hard that is for him, he wasn't Evel Kneval, and he couldn't come down nineteen steps, and that is not fair; it's not fair for there to be that segregation. There's other events in this gym and can't something be done? He works with an assistant, so maybe he can't do so much, but Cathy can do a lot because she had to be picked up. I couldn't get her in by myself. She's very thin but I couldn't do it alone. We had to go find another woman and the two of us had to try to lift her into the gym to do her presentation and I think those people are just waiting for somebody to complain. So, you know, I think we need to not always assume that people don't want to do something. Sometimes they're just waiting for the appropriate disabled person to finally say that they want in or they want this made differently. And also, they do not want it for just themselves or for everybody that comes naturally.

AUDIENCE- Some people are real sincere about building buildings and making them accessible, but they don't understand really what accessible is. In their eyes what accessible is and what it is to us is something different. We were talking about the new pizza place in Carlinville earlier and how the guy did an excellent job on the bathrooms, the grab bars and everything, but the size is wrong. But to him he was being real sincere about this. He's got an "accessible" sign on the door.

AUDIENCE- There was a new tavern and restaurant built in Madison County, and I happen to know two of the people who are co-owners and they told me after the fact how much they went out of their way to make it accessible. I said, "Well, that's great." So I went up there and I couldn't get in. They had a ramp and that was fine, but the ramp went directly on an angle right to the door. Well, you can't sit on an angle, you've got to have something up there to sit flat. When you do get the door open, there's a lip like that. They thought they were really doing it right.

That area of Madison County around Edwardsville badly needs somebody to step in and look at some of that stuff. If just one person would ask for the booklet of standards, it's all right there in the booklet. All you have to do is look through it and you can find it. I'm going to wrap up something I meant to say at the beginning, but I just forgot about it. We are concerned about a funding crunch this year. I got a call today from my friend Jim deJong with the coalition. I don't know if you know about this or not, but the coalition is typically funded by the Department of Rehabilitation at $200,000 a year, and they were taken out of the budget altogether. They are getting no money or funds. If they don't get some money they will be closing their doors. That's the kind of year we are looking at. They had a budget of $200,000 a year of state money which was pulled out and is not being renewed. So if they don't get that put back in there, they will be closing effective July 1. Any other comments or questions? Next week we'll probably be getting into the meat of independent living which is the 1970s since we ran through the 1960s pretty rapidly since there wasn't much to talk about. But the seventies was really the time of the legislation and the independent living movement, so we're going to jump into the 1970s next week and we're definitely going to spend a class or two talking about philosophy. So that being the case, we are adjourned.

CLASS IV

Last week we were able to cover several areas since the 1950's had quite a bit of activity regarding independent living, but the 1960's were not as active. We have moved up to where we are starting to talk about what is identified as the actual history of the development of Independent Living Centers themselves. We have talked about their background and the fact that independent living does not just happen overnight. It preceded the independent living movement many years ago, including when we talked about WWII, the 1950's, the polio epidemic, Gini Laurie and her organization, etc. You may remember that one of the articles I quoted last week said that Ed Roberts was the father of the independent living movement, and there is not much discussion about that. He is identified by just about everyone as the father of the independent living movement. Gini Laurie is one of the grandmothers of the independent living movement. Today we are going to be talking more about Ed Roberts and about the actual formation of the Centers for Independent Living in this country. Let me give you a bit of background, some of which we have touched on before. The first center was started in about 1972 (that is the date that is identified). At that time, Ed Roberts was a student at the University of California at Berkeley. In just a couple minutes we are going to watch a tape about Ed Roberts. Ed Roberts was the Martin Luther King of our movement. He is identified as the person who was the most dynamic, the person who really got the movement started and off the ground and established the first center. The segment we are going to watch from TV is when he was interviewed on 60 Minutes. Just to appear on 60 Minutes is a big deal in itself. The tape is probably a few years old, but I think it makes a lot of good points. You can really see Ed Roberts and the fact that he was severely disabled. For him to live, just literally live, requires that he use a respirator. He is probably one of the most severely disabled people you will ever meet. I have met Ed Roberts personally a number of times. We talked about Gini Laurie and how she tended to have people come in from around the world to her house. I met Ed Roberts at her house a couple of times and also met him when Gini had her international conferences, to which he would typically come. Again, Ed Roberts was a part of that whole network that developed through Gini Laurie and Toomie J. Gazette, which later became the Rehabilitation Gazette. I think we would do best just to go ahead and watch the tape initially and then talk about the whole movement after we have seen the tape. Let's go ahead and watch that. Again, this is when he appeared on 60 Minutes. TAPE: 60 Minutes Right after Ed Roberts there is a section on ADAPT, and we will take a look at ADAPT as we go along too. They are one of the more aggressive groups in terms of acquiring civil rights. I don't know how old this is on Ed Roberts; I think it is four or five years old probably, prior to the American Disabilities Act. One of the things that he promoted was the American with Disabilities Act, which is now passed and we are expecting regulations on it in the near future. Some of the things that are mentioned in the tape are things we have been talking about, and one of the things of interest to me is when he talks about people's expectations. If you have a disability, you really need to go beyond people's expectations. I think the expected is what is really routine in a community and to me, one of the major limiting factors in a community is what is expected of us. I think there is a lot of evidence to support that, and I think it really takes an exceptional person to go above and beyond what is expected of them in a community. We will talk about that to a further degree as we talk about the independent living philosophy. Again, back in the 1970s, the independent living movement, as started by Ed Roberts, included a man named John Hessler who was associated with the university at the same time and who was a student there the same time Ed Roberts was. He certainly has never been given the credit Ed Roberts was given, but at least he was on campus at about the time the center started at Berkeley. Does anyone know anything about the campus at Berkeley? Does it ring a bell to you at all? Does anyone remember what it was like in the early 1970s? There were shootings at Kent State about the same time. Berkeley was really one of the hot places whenever the anti-war movement was occurring. It was one of the places where a lot of the radical people surfaced. That was the atmosphere when Ed Roberts was going to school there. It was a place where there was a lot of social change being promoted, and he was there at that time and took advantage of that and caught on to that philosophy. Social change can happen from student movements. And that could be possibly part of what prompted him to get involved as a social movement to further the rights of people who are disabled. When he started the Independent Living Center there he made three assumptions about people with disabilities. The first one, that those who know best are people with disabilities. This comes back to the empowerment issue, that people with disabilities really do know what is best for them. That we are the ones who are experts about our lives and it is best, if you are going to start a movement, that the movement recognize that people with disabilities should be in charge of their own lives, taking control of their own lives and choosing what services will be available to them. Secondly, that the best approach is a comprehensive service approach, not to get a service here and a service there, but to look at the whole broad issue that affect people with disabilities and try to have a comprehensive approach to dealing with those. That would likely include some community services, going out into the community to change the community, as well as providing services to individuals with disabilities and individuals with a variety of disabilities, not just one disability. Centers for Independent Living have never been centers who just serve blind people, or just serve deaf people, or just serve people who are physically disabled. They have always taken the cross disability approach, as it is called, and made the effort to serve people with a variety of disabilities, again necessitating staff members who have a variety of disabilities, as well as a board of directors that reflects the different disabilities in the community. Two of the premises were those and the third was that people should be integrated as fully as possible into the community. Those are the guiding premises for the Centers for Independent Living as it got started in the 1970s. Additionally, the Centers for Independent Living and the approach of Centers for Independent Living did not just come from anywhere. Ed Roberts was there in the midst of that political atmosphere at the University of California at Berkeley, and some of the other social movements that were significant in the independent living movement were the following. The Civil Rights Movement was very important in terms of our own history. If you have ever taken a look at the civil rights movement in this country, it is very analogous in terms of the issues, or very analogous to some of the things that we are promoting, problems with transportation, housing, jobs, education, etc.. Those were iss