REGION V INDEPENDENT LIVING CONFERENCE
"25 Years of Independent living:
Keeping Advocacy Alive"
Critiquing Independent Living History and Philosophy
October 20th, 1997
11:30 a.m. Luncheon
>> I want to let you know that in five minutes we will get started. You will still be eating. But we have a lot to go through. So in about five minutes, we will get it all started. And so enjoy your lunch. Hopefully, maybe we can eat and listen at the same time. It will be a test for you. We will give you about five minutes.
>> Can you hear me now? We were having problems with the microphone. I want to make sure. Wave in the back if you can hear me. Okay. Somebody from the back wave if you can hear me okay.
My name is Dick Goodwin with the Illinois Network of Centers. I started working on this Region V conference. I was at that time the president. This was about a year and a half or two years ago we started working on this. I'm no longer the president, but I got to stick with being moderator of this panel, anyway.
I am, in addition to being the past president of the Illinois Network of Centers for Independent Living, I'm the director of one of the centers in the state, IMPACT, which is in Alton, Illinois. The center is near St. Louis.
I've been an observer of the Independent Living movement for about 30 years. I know we are celebrating 25 years, but the movement goes back further than 25 years, as I think you will hear today.
We really have a distinguished group of speakers today. One of our speakers, Max Starkloff, has not arrived. We hope he arrives. He was driving up from St. Louis. We hope that he still will be here.
With him here, we would have had two of the original Centers for Independent Living represented. There were ten. I wanted to tell you if all five of us had been here, we would represent 190 years of living life with a disability.
(Applause)
And I think that the theme of the conference, "25 years of Independent Living, Keeping Advocacy Alive," I guess when I think about that, the first thing that I think about is the early days of the movement and that we have lost some of our leaders, including the recent death of Evan Kemp, Irv Zola and probably we think most of the death of Ed Roberts. I know that my wife and I were on vacation and we came back to the office. We were gone about a week and there was a note on my desk that said simply "Ed Roberts is dead."
And obviously I was taken aback by that. A lot of thoughts ran through my mind when I thought about Ed and his history and how important he had been to all of our lives in redefining what it means to have a disability in this country and in the world.
He really changed the perception of what it means for us as far as having a disability, moving it away from the context of the medical model, so-called, to a more sociological and political context, which is where it really belongs and really fits.
And I also thought about, I'm one of those dreaded baby boomers. I was in college in the late '60s, and early '70s. Let me ask a question that I sort of fear asking, but how many people remember the late '60s?
(Showing of hands.)
(Chuckles.)
Now, the real question is, how many people were around in the late '60s that don't remember much?
(Laughter.)
But being on campus in those days, and I think this was true of most college campuses in the country, there was a great deal of political activism on a variety of issues. A big issue on campus was the anti-war movement, the Vietnam War protests, and a lot others. That was just an amazing time to be on campus. And if you didn't organize and form a group, you were out of step with everyone else. There were a lot of campuses and communities that formed small groups of people that really were the seeds of the Independent Living movement throughout the country. I know we did it in Alton, and I know they did it in St. Louis with Max and others. And I just assume that throughout the country those kinds of groups were forming and trying to promote a more open, accessible environment in the community.
Of course Ed, he did it better than all of us, and he was the first one to envision CILs. I don't think, as we might say "Who would have ever thunk that we could get paid to do what we were doing as volunteers in those days." But Ed had the foresight to believe that we could establish organizations directed and managed by people with disabilities, where we were really paid, still, to be advocates. And I still think that that is an amazing vision that he had and certainly we owe him a great debt.
And I think that, if you read about the early days of Ed Roberts, I always said that before he was involved in the disability rights movement, he was involved in the civil rights movement with other groups, where he really learned the tricks of the trade, as far as promoting our rights from particularly blacks and the hispanic movement- just taking what others had learned before him.
So, from that, I'm going to present -- I have never really heard a definition of independent living or disability that put it in a sociological context. So I'm just going to read one to you that I think puts disability in the sociological context, just for your consideration. And after I do that, I will introduce our panelists. And each panelist will speak for about 15 or so minutes, and then we should have time for questions at the end.
But just consider this as a definition of disability:
A person with a disability is a person identified as having an impairment who, as a result of prejudice, stigma, low expectations, community barriers and discrimination has restricted choices regarding participation in a variety of social roles, including roles related to education, employment, transportation, leisure, worship, being a customer, et cetera, et cetera."
That is actually an old document that I found that we passed back in the mid-'80s. There has always been sort of our definition of what it means for people who have a disability. People who come to our office, we operate under that assumption that that definition works for us and our organization.
Without further ado, let me introduce our panelists. During the presentation, you will hear some fascinating, I think, history, philosophy, and advocacy. And I will just say that I think this is a discussion that this movement needs to have about our history of where we have been and where we are going. And you may not hear anything revolutionary today that solves all of our problems, but I think it's a starting point for really discussing on a serious level what it means to be advocates, what it means to be an advocate for Independent Living.
And as we are here today, really paying tribute to Ed Roberts and John Hessler, and Phil Draper and others who started the first center 25 years ago, we need to think about what will people think 25 years from now when they think about us? Will our legacy be as positive as the legacies of those folks? And their legacy is positive because they were advocates and they really changed the world for the benefit of all of us....
To my immediate left is Ann Ford. Ann is the current president of the Illinois Network of Centers for Independent Living. Prior to that, she was the president of the Statewide Independent Living council. She is the executive director of the DuPage County for Independent Living. This is her hometown, her home area, right here. She has received numerous awards over her period of being an advocate. She received the first Ed Roberts award for excellence in independent living from her peers in the independent living movement. And from the Coalition of Citizens with Disabilities in Illinois, she was awarded the Justin Dart distinguished citizen award. Thank you.
To her left is Joan Headley. Joan is the executive director of an organization called GINI. That is named for a lady named Gini Laurie. Many of you know Ed Roberts is the father of the independent movement. And Gini is the grandmother of the movement. And she will talk about some of the early days of the Independent Living movement. She has been the executive director of GINI since 1989. I noticed on the resume she is a frequently sought after speaker. She has given speeches in at least 20 different states in the last couple years. She gets around a lot, does a lot of speaking, and she will actually be the first speaker today.
Finally, to my right, is Marca Bristo. Marca is the president and chief executive officer of Access Living. She has long been a nationally recognized leader of the disability rights movement. And she is also one of the founders of Access Living, it's one of the ten originally centers founded under Title VII. She is the chairperson of the National Council on Disability. And she is past president and co-founder of the National Council on Independent Living. She received numerous awards also for her work in the field. In 1993, she was the Henry Betts Laureate. She has received numerous awards for her disability related activities, and work not just in this state and in this country, but international on disability related issues. She was awarded the Gateway to Independence Award, and was awarded by the Coalition for Disabilities their Distinguished Citizens Award also.
So without further ado, our first speaker will be Joan Headley and then Ann Ford and then Marca Bristo. And if Max shows up, we will stick him in somewhere.
>> JOAN HEADLEY: It has been written that there are two grandmothers. Mary Switzer, she was active during the '50s and the late '70s. During her tenure, rehabilitation increased. Mary Switzer demonstrated to Congress the financial rewards of turning adults with disabilities into productive citizens and taxpayers.
According to Gini Laurie, the other grandmother of the independent movement, Mary's role was vital, because voc rehabilitation monies developed an educated leadership, which was essential to the independent living movement.
Why is Gini Laurie considered one of the grandmothers of the Independent Living movement? Who was she and why did she get involved with disability? First, who was she? In her own words at a speech in 1988, at the dedication of St. Johns Rehabilitation Hospital in St. Louis: "my father was a surgeon on the staff at the old Euclid Avenue St. Johns Hospital. In 1912, the year before I was born, four siblings were struck by polio, a 12 year old sister, mildly disabled, six year old brother, very severely disabled, and two sisters, aged 3 and 9 died within days at St. Johns. In their memory my mother painted a mural of them on the ceiling of the St. Johns chapel, depicting them as angels."
Another part, "two sisters died, one was named Virginia and the other was named Grace." She was born after that and named after her two sisters that died.
"Sixteen years later, I watched my significantly disabled brother die of pneumonia and under ventilation at St. Johns. His funeral mass was at the St. Johns chapel, under a mural of our sisters."
Because of her family experience, it was only natural for Gini to be a Red Cross volunteer at one of the 15 polio respiratory centers in the late 50s. The centers provided medical and psychological rehabilitation. But until 1953, most of the permanent respiratory users seemed doomed to remain in the hospital for the rest of their lives. That year, in order to save money by avoiding lifelong hospitalization at the high daily rate of $37 a day, Rancho in California had homecare that cost ten dollars per day and the people were sent home with their iron lungs.
Gini worked in Cleveland and kept up with her old polio pals who went home from the center. Again in her words "it became apparent that they had two vital needs: People and information. They wanted to keep up with each other and wanted to share information about their lives and their equipment."
She and her husband Joe started to meet those needs by building a heated swimming pool with a lift at their home and held annual reunions of the alumni of the respiratory center. In 1958, the same year, they started publishing Toomey J. Gazette, featuring news of how polio survivors managed at home. Am I going too fast for you? I always do.
By 1959, the vaccines had stopped polio and the public stopped giving to the March of Dimes, and the March of Dimes stopped paying for attendants and closed the centers. The sudden loss of attendant payment caused panic. There was no Social Security disability, no Medicare, no Medicaid, no vocational rehabilitation for people with severe disabilities. There was only welfare and help from churches or family. Fortunately, polio survivors had gone home, and they had had time to work out some systems of community support.
However, they also needed psychological support of other survivors, and that's where the "Toomey J. Gazette," later to become the "Rehabilitation Gazette" came in. Gini led a letter writing campaign in 1959, alerting survivors of every state to write to their Congressman urging national attendant care legislation.
The national campaign was unsuccessful, but it called Washington's attention to the problems of people with sever disabilities. However, the California campaign was successful, due to the efforts of the respiratory polio survivors, and state legislation was established for attendant care.
And again, in her words: "The latter cleared the path for the independent living movement, for attendant care is the lynch pin of independence."
The 1959 campaign for national attendant care demonstrated and solidified Gini's belief in networking. The power of connecting people with people and the power of information. Again, in her words: "Networking links people who share common needs or common goals. Networking is a support system. It is a method of self organizing. It is the structure of a social movement. Most of all, it is a method by which people get things done."
To briefly demonstrate her persistence, her acceptance of people as they were, and her constant connecting, I'd like to read a few things from the archives.
This is from the April 1964 "Parade Magazine" and the title of the presentation -- the title of the article is: "This Student Majors in Courage." Under the picture it says, "Helped by brother Ron, polio victim Ed Roberts goes to classes."
Gini read this in "Parade Magazine", so she featured Ed in her 1965 "Toomey J. Gazette." In July of '65 she received a postcard. "Editor, I'm sorry you did not come to me to update the article. This article taken from "Parade Magazine" was not only inaccurate in many instances, but also poorly written. I am sorry to say that you have compounded the errors. Signed, Edward V. Roberts."
"August 3, 1965. Dear Ed: Mia Culpa," Gini writing back. She takes three paragraphs to say why she didn't consult him. At the end she said, "I would be most grateful if you would tell the story of your teaching career, living at an attending University. It's vitally important not only to the young would be college students, but to the vocational rehabilitation departments who will be financing their studies.
Meanwhile, could you help with some information as to your present living arrangements at the Cowell Hospital. A very brilliant young Respo," and they used that for polio survivors, "a young Respo in Germany is fighting to find a university in the United States which he can attend."
"Dear Ed, my friend Adolf in Germany sent the enclosed letter to me to forward to you. Do hope you are the magic button for him. I'm so wanting to help him achieve his pinnacles."
Postcard dated 1970. It's from Ed Roberts. I won't read the whole thing. September 9, 1970. "I have begun a consultation business for anyone needing help with problems with cripples. I've consulted with Health Education in Washington, DC, about programs for cripples in higher education, help secured $80,000 grant for UC Berkeley program run by cripples for the education of cripples. I brought John Hessler in as director. He is doing a magnificent job. Would you like to hear more? I believe no other consulting firm like this in the country. Ed."
Then again in 1970 he wrote a whole article, but the last paragraph, this is from Ed. "I'm tired of well meaning noncripples with their stereotypes of what I can and cannot do directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the start of something big -- cripple power."
(Laughter.)
And this is from a New York newspaper, January 31, 1971. And the headline says "Judy Rallies Disabled Versus Worst Bias."
Judy Heuman grew up being crippled, but today calls herself disabled and discriminated against. She feels that the word "cripple" means a person is not physically whole. "If militancy means asking for something that is yours, then we are militant," says Judy, president of the group. "We are tired of remaining silent just because we are scared of losing the little we have."
Quoting again from Gini Laurie, a speech that she gave at the for Independent Living in Springfield, 1988, "Independent living did not just happen. Two quads in Berkeley in the early '70s did not wave their mouth sticks and say, 'let there be independent living centers.' The Independent Living movement was not isolated. It was very much a part of the time and a reflection of the time."
She further mentions the influence and the evolution. It was influenced by the awakening of the individual, of the worldwide awakening to the rights of individuals and minorities. The independent living movement paralleled and was patterned after the black and women's movements. It was influenced by the fact that there were many more healthy and long lived disabled and elderly, because of medical advances such as Penicillin. There were many disabled veterans who survived Korea and Vietnam due to better evacuation and treatment learned during World War II.
The movement was influenced and preceded by other organizations, the Canadian Paraplegic Association, the Paralyzed Veteran Association, the National Paralysis Foundation and the American Coalition for Citizens with Disabilities, or the ACCD. Again in her words: "The ACCD was very important because for the first time people who were blind, deaf, and physically disabled worked together for their mutual benefit. It brought together people with disabilities from the east, west, midwest, and south." And again in her words. "I was the token nondisabled member of the coalition."
She continued to publish the "Rehabilitation Gazette" until her death in 1989. She had added the Polio Network News and the IVUN news for ventilator user. She spent 50 years of providing people with disabilities with information and knowledge and connecting people with other people.
I'll conclude with a few quotes and caveats I found in her speeches. "I prefer to think of the movement as an interdependent living movement, rather than an independent living movement."
"The calls usually start by someone asking for the name of a nursing home that will take people on ventilators."
"I react violently to suggestions and remind them that they do not need nursing, they need a pair of hands that they can direct. They do not need to be buried alive in a nursing home. They need to continue to live their lives as they choose."
Upon being told that some of her friends with disabilities were getting a divorce, she responded: "Well, nondisabled people who marry get divorced."
"Beware of bringing the hospital home. Beware of making the cost of using a ventilator astronomical. Society will choose the more economical alternatives, no ventilator."
"Beware of the Oedipus complex. People don't need buildings, they need improved systems."
"Beware of UBI, universal bureaucratic idiocy. Be careful you don't become what you were originally created to fight against."
She wrote this speech when she was 75, and this is to an independent living center. "Reach out to the aging population. ILCs should practice what they preach. Hire 70 pluses as peer counselors. Put older people on your boards. Respect each other. The elderly may feel the same about the young's lack of understanding that disabled feel about nondisableds' lack of understanding.
We can't let divisiveness happen. We must all work together, visual impairments, hearing impairments, physically disabled, mentally retarded, mentally ill, the elderly. We are a power if we work, think, and play together, and only if we do.".
Thank you.
(Applause).
>> ANN FORD: Thank you. Listening to Joan brought back more than a few memories for me. When Dick was telling me earlier today how he had tabulated the numbers of years that we have combined in personal experience with disabilities, I think I have more than anybody else, and so I go back to a lot of the days that Joan was talking about. I go back to a time when the word "cripple" was a common part of everybody's vocabulary. I go back to a time when we didn't talk about advocacy. We didn't talk about peer counseling. Although those things were happening, we didn't have the buzz words or the key phrases that roll off our tongues so easily today.
I think that what Gini Laurie did will go on forever. I think, as I listened to some of her quotes, it occurred to me that she could be right with us today. She may have been talking about things that she was observing at that time. They are some of the very things that I observe and I think about as I go through my days today.
This conference has primarily been about advocacy, about the efforts that we all need to continue to keep advocacy alive as we have been saying. Advocacy did not start with the independent living movement, and I think it is important to talk about that.
One of the things that sometimes concerns me is that younger people with disabilities who may or may not choose to become involved in our movement sometimes have a tendency to not realize what has gone into bringing about the levels of acceptance, however poor it may be, that is in our society today.
Little things like: Built in accessibility parking spaces that are designated for people with disabilities, curb cuts and buildings that are accessible, things that are signed Braille, the provision of TTYs and interpreters, sometimes are taken for granted. And people, I think, need the historical perspective, need to be able to realize that those things are there because some group of people somewhere fought long and hard to put them there. They didn't come with our society.
I can remember many, many years ago living in a town where the recommendation of the Mayor, when we talked about how convenient it would be if we had curb cuts downtown, was that maybe people with disabilities should wear whistles around their neck, and when they needed help getting across the street, they could blow the whistle and someone could help them.
That was my introduction to advocacy. I wrote a letter to the Mayor that wasn't as tactful as some letters that I might write today. And I think had he been able to ask me to leave his town, he would have done that. But those were the kinds of thing that were routine. And there were groups of people with disabilities who were figuring out that this isn't right, and that we are entitled to more, we are entitled to better treatment. We have a right to use the same city that our friends and parents and siblings use, and it should be accessible to us.
I think we stumbled a few times in getting there, but there were many groups that led to what eventually became the independent living movement. My personal experience started in terms of organizations, started in the late '60s, with an organization that was then called "The National Paraplegia Foundation." And in that group I sort of grew up and learned what it meant to be an advocate, learned what it meant to do peer counselling when it wasn't called peer counselling.
One of the things that always reminds me of some of my earlier experiences in that organization is when I go to Washington. One of my favorite things is to ride the subway because I've never written a subway anywhere else in my life, and the subway in Washington is so accessible.
In 1969 or 1968, there was a group of people who were a chapter of the National Paraplegic Foundation who went to court because the subway system was being built. They felt there was a need for it to be accessible. I followed the battle for a couple years through the reports with the national office and through conversations I had with some people. And in my mind, living in downtown Chicago, where nothing was accessible, I couldn't envision what it would be like to have a subway system that you could use your wheelchair and ride on. I think that's why I take delight. And if I go to Washington and I have even nowhere to go, I still ride the subway. I think going back in time, where these things were not a given, celebrate more because they take on a greater importance in our life.
I watch things evolve. A lot of the organizations that Joan mentioned I was involved in. I was involved in the American Coalition of Citizens with Disabilities, and it was another new experience. It brought me together with people whose disabilities were different from my own. It brought me to a table with people who were deaf and who were blind and who had other kinds of disabilities that I had heard about or read about but had no personal experience with.
And at the very beginning, it was a little frightening, because you don't know -- you know your own disability. You know what your own issues are. But it was one of the greatest learning experiences of my life, to be able to come in contact with those people and to find out that all of our disabilities have certain things that are unique to those disabilities.
But we all have in common the fact that because we have a disability, whatever it is, our society chooses to set us apart and treat us in a way that is different from other people, and we all have the belief that that is wrong and that we need to find a way to change that. And I think that is what brings us together. I think that is what brought about eventually the Independent Living movement, and has allowed us to grow to where we are today.
I think even when Independent Living centers were first started, the focus really for a long time was on physical disability, was on all of the barriers that we were facing and trying to deal with. And it's been really an ongoing process of learning and growing and appreciating for me to see us take on more and more, to see us open up and be aware that there are disabilities that all of us are still learning about, each and every day, and that our mandate, if we truly are going to "practice what we preach," is to be able to accept and to work with and to learn about and to accommodate any and all of those kinds of disabilities.
I thought it was interesting to listen to Gini's comments. I thought it was interesting for those of you who were here yesterday to listen to Gerald Baptiste, when he talked about the need for us to be all inclusive and the fact that if we are going to do what we pulled ourselves together to do, we must be, we must not discount any disability or any group of people. We cannot say oh, well, this applies to this and this and this group but not to that one over there. And to carry that a step further, when I look at our movement today, when I think about some of the comments that Gini made in her speeches, towards the end, about divisiveness, that is something that occurred to me more and more lately, that we see signs of and that I find very concerning.
I think that anybody who is involved in independent living as a career, whether that's as a volunteer or as a paid staff person, is involved because they have a commitment in one way or another to bringing about social change, to taking a society that is not open and accessible to all of us and changing it so that it will be.
But we don't all do that in the same way, any more than we do anything else in the same way.
I think that we heard Gerald say yesterday that we have to be accepting of everyone in our movement. We come in all different sizes and shapes and colors and kinds of disabilities and personal lifestyles, and all of the things that we talk about when we talk about diversity.
We also come, every single one of us, with our own unique personality and style and method of communicating and method of doing the advocacy that we believe so strongly in. And I think that as our centers grow, as our centers work more and more toward really trying to create a level of equality in our country for all of us, one part of what we have to do is keep our minds open and accept the differences that we all bring in how we choose to do that.
If we don't, if we slip into a pattern of saying "this is how you must do your advocacy. This is how you must operate in your community," then we are making a lie of everything that our movement was started on. Then we are just saying that: Well, consumer control is all right and personal choice is all right, as long as your personal choice is to do something the way I think you should do it.
I think there is a danger there that is a threat to all of us, because I think if we aren't able to stay united in what our goal is and allow each of us to work the way we work best toward our goal, then we won't reach it. Because I think that the people on the outside who have not yet bought into our philosophy, the people out there who we are trying to work to bring about change are going to see the little cracks in our walls and are going to take advantage of that and are going to use that against us, rather than learning from us, rather than gaining an understanding of what it is that we're talking about and we're trying to bring about.
And so I think that as each one of us looks at what we do and how we do it and how we would have other people do things, we need to truly respect and appreciate and embrace the differences that all of us bring and learn to work together with different styles of doing things, different ways of communicating, and know that all of those things are needed to work together to achieve the goal that we're all working toward.
Our goal isn't to all be the same and look the same and act the same. Our goal is to create a more open society, is to do away with the barriers that exist for all of us, and we're all going to work at that in our own way. So we have to afford each other the same kind of respect and dignity that we are going out into our society and telling other people to afford to all of us. Thank you.
(Applause).
>> MARCA BRISTO: Wow, listening to Joan today really choked me up a lot. I don't know how much of you were going through this, but through the course of this morning's presentation, a lot of dear friends were brought up who aren't with us any longer. And as you talked about Gini and you talked about Ed and Irv, I was struck by my last conversations with those people and my first conversations.
With Ed, my first conversation could be summed up in the way I think he lived his life. He taught me in a way I shall never forget, that we live in a system based on outdated attitudes towards people with disability, and we have built a system of public policy based upon those outdated attitudes. That if that was going to change, we have to change those self attitudes first, and then bring other people around to our world vision. That's how I remember meeting Ed.
Shortly before he passed away, we both ended up in the hospital at the same time. He with his first stroke and me with a bad gallbladder. So as people in the movement do, we were peer counseling each other from the hospital bed. An important lesson there for me. In independent living, the roles change. In one moment you're the peer counselor. In the next moment, you're the peer counselee. And in some moments, such as that one, we were both to each other.
What Ed left me with during that period was how close to death he had come, and how his world looked different to him, but not so different that he wasn't going to keep on doing what he had been doing all along. He could have packed things up and gone home and lived out his life and done all those things that you say you're going to do some day. But Ed was doing what he wanted to do and continued doing so.
I remember him talking about how he realized, finally, that he wasn't invincible. That as a little fragile, frail boy on an iron lung, he felt invincible. And when the reality struck him that he wasn't, at first it was alarming, but then it made him just want to reach more, because there were things he hadn't done yet.
And this speaks to his vision and the vision of Gini and other leaders who started this movement. Ed had two goals he shared with me that day, yet untackled. One was the creation of a transgenerational movement that went from cradle to death, and that his life events had personally hammered home to him how important it was for us to reach young people and old people.
And the second was, as he reflected on the accomplishments he and we together had created, was how little it seemed when people with disabilities were still 70 percent unemployed, the poorest of the poor. What had his life mattered? He asked himself those questions with me on this phone call, and concluded that the one thing he needed to keep on fighting around was the issue of economic empowerment; that until people have buying power, they don't have real power.
So much as he started as my visionary, he left me that way, with those challenges, which have guided me now in my new role with the National Council on Disability. And when you spoke about Gini, I remember the first meeting, and I'm sorry Max isn't here, of the first ten Center for Independent Living directors, in a hotel room in Washington, where the bureaucrats wanted to count how many service units we were doing, when we haven't yet defined what the services were.
And we kicked them out of the room, decided we needed to talk to each other, and decided not only that, we needed to meet again and they ought to pay for it. And not only that, we needed a newsletter. And then we met people like Lex and Judy and Ed, and shortly Gini, and said we need more than a newsletter. We need an ongoing way to connect with each other. And I look around this room today and I say these people, Gini and Ed and others, would be so proud to see all of you here, that those meetings resulted in the formation of the National Council on Independent Living.
And in another hotel room in St. Louis, Gini then also -- she wasn't quite the token A.B., but there were others. This was when we were defining who we are as centers. And the discussion came up of well, what about this thing in the Rehab Act called substantial consumer involvement. What do we mean by this? Many of us in the room said well of course it means a majority of people with disabilities running the place, working there, on the boards.
And a few of the nondisabled directors, pardon me to the nondisabled people in the room, said no, no. There needs to be room for us, too. And we said yes, there is, in the other 49 percent. And we had a three hour battle around this issue. Finally, sitting off in the corner quietly, was Gini Laurie. And she piped up with something like: If there is one thing I've learned in all my years, is I wouldn't know anything about disability in people's lives were it not for my family members and the thousands of people have told me what they really need. So if we are going to create a system, for God sakes, let's not create another one like the one we just got, because it ain't working.
The whole climate in the room shifted. 51 percent sailed through, and the beginning of the establishment of a new way of doing business was laid down.
But I think what Dick really wanted for us to do was to look forward and also to take a minute in the present context to say how are we doing? Are we delivering on the visions and the values of the people who spent their lives in this? In the independent living movement, we say there are four or five values: Cross disability, community-based, a mix of advocacy and service, and the utilization of a peer counseling service modality.
In the disability rights movement, we say there are three essential values: Inclusion, independence, and empowerment.
Are we in the day-to-day operation of our centers, no matter what your job is, are we living those visions? Do they guide you every step of the way? And when you steer off course, do you know how to get yourself back on?
I am ever grateful for Ed and Gini and other people, because they drilled it so deeply into my spirit that I always know when I'm steering us off track. And I think my staff will probably nod. If I don't know, I have confidence that they will come to me and say you're going in the wrong direction.
That's what I believe the independent living movement should be doing, holding ourselves accountable. Somebody said something about becoming that, like what we were trying to change.
If we won't take the risks, who will? And when we take the risks, if we are not mature enough to admit we can fail, and then correct our course when we see that we are failing, no one else will do that for us.
I'd like to share with you a few areas that have cropped up sort of pivotal moments in one CIL's history, very briefly, where these challenges come up daily.
Staffing. Who do you hire and how do you fire? Who runs your organization? When you hire in senior positions, who do you hire into that? Do you take into account diversity in your hiring? Diversity of disability, as well as diversity in a racial and ethnic and gender sense?
And when you fire, do you hold the same standards up for people with disabilities as you do for others? All too often, I think not, all too often we are afraid to terminate a person with a disability when they can't do the job, even though we are the people that advocated the Americans with Disabilities Act be written the way it is.
At our board level, who is on our board? Do they get it? Do they understand this stuff? Did you ever one day wake up and look up at your board and go oh, my God, they don't get it, at a critical moment in time where some big decision is about to be made and then sit there and wonder whose fault is that? What is difference about CILs is our ability to kind of break away some of those bureaucratic roles and understand that we are a team, all of us, the board, staff, and everybody plays a different part in that.
I believe that we have to reach out into uncharacteristic circles to find people with disabilities who haven't yet got it, necessarily, but who are out there in the world and then bring them around to our way of looking at the world, a risk. A risk.
But I believe that we cannot sustain our organizations long-term and take on the challenging advocacy that we need to take on if we don't spread our reach, bring in more resources that give us the flexibility to do things that our government grants won't allow us to.
Which brings us to the role of the executive director. When was the last time you took your own pulse? How are you doing? Have you been in the same old job for the past seven years? If you have, I think you're doing it wrong. Because like people, organizations grow. And when -- if one part doesn't grow with it, you stunt the growth of the organization.
I believe it takes a recreation of your own role every so often in order to keep your organization vital.
Program decisions, have you ever taken on a program where in your gut you weren't sure if it was independent living, but you did it anyway because there was money there? Well, we have, right? It was an unpleasant experience. We found ourselves chasing widgets and trying to make things into things they weren't, and interacting with consumers in a way that we knew wasn't good for them or us. But we did it anyway, because the money was there. And the money wasn't where we wanted it to be.
Finally, one day our board and we woke up, and I think I talked about this a couple years ago at a regional meeting and said this is not us. It doesn't fit us.
The ability to look at what you do and say we're doing it wrong is an enormous part of your role as people with disabilities and as Centers for Independent Living. When we walked away from that $250,000 grant, we were terrified. We laid people off. We did not think we could bounce back from it, but bounce back we have, and then some.
We bounced back stronger than before, convincing the city to give us empowerment zone money, like the word "empowerment" away from case management resources to do that which fit us.
Now, will that work? I don't know. I don't know. But I do know that having that passion deep inside of us is what keeps us free. And when -- fund raising, the dirty word, the thing most executive directors hate to do. The place where you could become like Jerry Lewis, if you are not careful.
We have redefined fund raising. Millions of dollars go into public policy and services supported by philanthropy. All but two tenths of what is going to people is going into the industry. Two tenths of one percent of all the giving by foundations and corporations for disabled people goes into the stuff you guys want done. So make it your business to change their priorities. Make it your business. It can affect more than you can imagine.
I'm proud to say that our long-term advocacy as well as the making of a new friend in a place where you hadn't expected has resulted in the Chicago Community Trust revisiting all of their giving programs, to determine how they are dealing with people with disabilities, to bring them into the 21st century with our values, not the old values.
What about your advocacy agenda? Do you take on tough issues or do you shy away from them? And how do you sort through where you go. Take inclusion for a minute, how do you reconcile in a cross disability organization, the segment of our constituency, deaf people who say inclusion is not right for us, when everybody else in the organization is saying it's philosophically where we need to be? Well, you start by talking to each other about it, trying to understand each other's perspective, and looking, looking for a way you can draw a circle around the things you agree with. And let go of the rest of it. Work in that common area.
Or assisted suicide. Never has there been a more challenging public policy issue for disabled people in my mind. First blush, it's cut and dry. Second blush, it isn't. Why? Because the right to choose, one of the hallmarks of independent living, clashes with what we know to be the stereotypes that lead people into that trap in the first place, that your life isn't worth living; and the social services out there, which you need to live a quality of life, aren't there. So what do you do? What do you do?
I say you start by talking about it, bringing the controversy right into the room until you can get all the perspectives up on the table. And I suggest when you've done that, disability rights people will look at this with only one solution, and that is, choice should not be so important as to result in death in so many people with disabilities. We have to look at this issue more.
Membership, what role do members play in your organization? I'm first to tell you we don't know at Access Living. This is something we have not yet tackled. We hope to this year, but it's a blurry mess to us. We sent out the stuff and some people sent -- but we are not committed to it. Is it a fund raising vehicle or an agitation arm? Who knows, because we have not asked the questions. But we are beginning to do that.
And the toughy: Salary and benefits. Do you have healthcare benefits for all of your employees? Have you made it your business to figure out how to get them, if you don't? Do you allow flex time, work at home time, telecommuting, or are you rigidly saying by the book, 9 to 5, you've got to be here. And how do you assess that and not allow it to go over board? And do you pay your employees commensurate with the market or do you keep them trapped in your own form of a gimp ghetto by not reexamining your salary structure on a periodic basis?
I know I have gone from kind of the philosophic to the mundane. I know you are influenced by the kind of person you want to be and the kind of organization you want it to be. To lead your organization or any takes a leader, a team, a shared vision, a fair amount of risk, some good luck, and a lot of commitment and determination. I know that everybody here comes to these meetings not to go on expensive travel Junkets, certainly here in Oak Brook.
On the other hand, you are here for more than just the in-session learning. I hope you are taking the time to talk to each other about the problems you're having, about the course you might not be following and how do you get yourself back to that course? Because everything we have built to this point is really up for grabs. The time I spend in Washington has put me closer to the cynicism, the conservatism, the cost benefit analysis. You know who typically doesn't win in those analyses.
The climate has changed, the context has changed. You know as well as I do that if we tried to pass the ADA today, we couldn't. It's a different world than it was in 1990. Has your center begun a process of responding to that different world? When we met with the president a couple weeks ago, he said: Globalization is affecting all of us. It is the number one issue that countries are looking at in their foreign affairs policies.
And he said: I've never thought of it in the context of disability before. But it goes to reason that there is globalization here also. We cannot sustain this economic period of growth without tackling new markets. And what we left him with that day, the huge unemployment rate of people with disabilities, made the light bulbs go off, without us instigating it, that here is a market in our own country no one has begun to think of.
Again, I hate to be this crass, but if any of you were around Sue Daniels, the associate commissioner at Social Security, long enough to see her flip chart presentation, about how the Social Security programs are expanding and growing, it doesn't take a rocket scientist to see where it's leading folks.
There will not be money in the system to maintain the existing SSI and SSDI programs, not alone healthcare, very much longer.
So, I come back to Ed and think to myself: He was right again. If we cannot challenge ourselves to find a way to tackle these big issues, politically, the continuum of disability across the lifespan, young to old, there is our power.
And from a public policy perspective, to shift policy to what we want for our lives, which includes a good living in a creative way. Our streets will globalize in a different way and look like the streets of Calcutta, where people with disabilities didn't have a Mary Switzer, who at least built institutions and funding streams, they have been on the street the whole time.
And as you're thinking about all of this, put it down to the personal level. How can you, when you leave here, reach out to a young person, and get that young person turned on to what this is all about. They need you. They don't know you are there, more often than not. NCD did a youth leadership meeting in July. My e-mail network is abuzz from all these young people who are -- they are like a pen pal now. They so want to connect with what you're doing, and we have made so few bridges to reach them. And as more of us leave, they need to be stepping forward.
Finally, I couldn't resist the temptation to leave on a little story passed on to me by my good friend Tom Benziger here, lest we think the disability rights movement is about "we" and "they," which is always maintained is an arbitrary distinction, almost always defined by Tom.
Tom E-mailed me last week and he said Dejavu. And I have a poster that says "deaf president now" and as you know, President Clinton just got his hearing aids. So what goes around, comes around. "deaf president now."
Thank you.
(Applause).
>> DICK GOODWIN: Questions? We don't have much time, maybe if you have a question or two we might be able to handle them. But I don't see any. We must have covered everything just perfectly.
Well, we thank you very much for attending. And I hope you enjoy the rest of the conference, and don't forget the final summation and the raffle, to attend that and bring your name tag and your evaluation form. Thank you very much.
(Applause).