Mar./Apr. 1999

A Vision of Redemption Centers for Independent Living in the New Millennium by Steven E. Brown   Steven E. Brown is co-founder of the Institute on Disability Culture. Steve's 1994 book, Independent Living: Theory And Practice, is sold by the Institute. For information, write to IDC, 2260 Sunrise Point Rd., Las Cruces, NM 88011. Since 1994, I have spoken and written about disability culture and the disability rights movement, working to change beliefs about disability. I have traveled across the U.S. and Europe. Yet today I once again find myself serving as director of an independent living center--a position I could never imagine again holding when I left my job as Executive Director of Progressive Independence, an IL Center in Norman, Oklahoma in 1990. Last summer I found myself going to a Board meeting of the Southern New Mexico Center for Independent Living in Las Cruces as an interested citizen-advocate--and leaving as Acting Director. How in the world did this happen? I knew I had to write about it when I read Bob Kafka's great article ("Empowering Service Delivery")in last Sept./Oct.'s Edge.   Background Eighteen years ago I lived in what now looks like incredible luxury. A graduate student in the history department at the University of Oklahoma, I taught, wrote, did research. I saw my career as a professor, preferably in a warm climate to accommodate my disability. I met some students who'd helped set up a local independent living center. I didn't know what an "independent living center" was, but I went to a meeting. I was impressed with their activities and became a volunteer while I looked for jobs in my field. My department chair told me of a Tulsa group looking to hire someone to write a history of their association. He recommended me. I called the contact and we hit it off: I wrote a proposal; it was accepted. Over the phone, I was hired. I began doing the research. When my association contact said he'd be coming through town and wanted to meet me at the airport, I told him I wouldn't be hard to recognize. "I'm about 6"4", have a beard, and use crutches." Oh? what had happened to me? he wanted to know. He hadn't known before that I had a disability. We had a conversation about that. Our meeting that day ended with the understanding that I'd hear from the group in a few days about traveling to Tulsa. But no one ever called me again. When I called to find to find out the problem I was told they were no longer interested in my doing the project. I went immediately to the independent living center, asking what I could do to right this injustice that had been done to me. "Nothing," I was told: no law protected against employment discrimination for disabled people. I began volunteering fulltime at the center and eventually took a job with them, transferring my passion for research and writing to advocacy and community change. My peers and I turned that community around on disability issues--but we also alienated our board, who could not understand our passions, our methods, our philosophies. In 1984, most of the staff quit because the board would not elect members with disabilities. I wrote about this in the September 1985 "Independent Living" issue of the Disability Rag. and called my story, "Of Heroes and Villains" (the magazine changed it into two stories: "The Walkout" and "Lessons I will remember.")   Just as there were heroes and villains in the 1984 walkout, there are heroes and villains today. What has changed is who I perceive in these roles. Back then, I was convinced that we and our supporters were heroes. We were taking extraordinary actions to change injustice. I still believe that. But I no longer see that board of directors as ultimate villains. Now I realize that they, too, were pursuing a vision that they had been taught to believe: that people with disabilities as a group were incapable of managing an organization. And why shouldn't they have believed this? Every social idea and model of the time reflected that same belief: people with disabilities were incapable. The medical model, which we disparaged then and we still do today, taught that there were only two solutions to disability--cure or repair: either we fix you by eliminating your disability or we fix you by putting a cochlear implant in your ear. (Christopher Reeve promotes this ideology today when he advocates, despite his own full and busy life, that he will not be content until he can once again walk.) Today I am having a much more difficult time blaming individuals for institutionalized doctrines, whether they be physicians following the medical model or board members regurgitating social tenets. As near as anyone can tell, the majority of the now-estimated 54 million Americans with disabilities hold exactly these same credos. Three years after that walkout, I was hired by the board I had walked out on to become its director, and to create a consumer-controlled board. For three years I worked to turn Norman, Oklahoma's Progressive Independence into a dynamic center. Then I moved on.   'The dynamics of change --Southern New Mexico style When my wife Lillian and I arrived in New Mexico several years ago to start our Institute on Disability Culture, we were told that New Mexico was "different than other places" and "you just can't change it." We didn't believe that. We did some work for the New Mexico Statewide Independent Living Council not long after we came. We were not a hit. We did some work for the CIL in Las Cruces. We were not a hit. We were perceived as too aggressive, too strident, too militant for a state which prides itself on its relaxed atmosphere. We learned not long after our move that "manana" did not mean "tomorrow" ¾it meant "not today." When the two of us presented our issues and stated that changes needed to happen yesterday, we were turned off and tuned out. After a couple of years we gave up. The center for independent living in Las Cruces seemed to have almost no interaction with the community beyond serving its clients. I had been told the board had instructed staffers that when they made advocacy forays into the community they could not identify themselves as working for the Southern New Mexico Center for Independent Living.   Early last summer, a friend of ours who worked at the CIL called to say that a woman with a disability was at risk of returning to a nursing home because the Center's board would not continue to apply for funds from the State Department of Health whose program paid for her personal assistance. What could be done to prevent this tragedy? she asked. The three of us spent several hours talking about it. If the Center could not be held accountable to the disability community, then why did it exist in the first place? she asked. She began the task of talking to other disabled people in the community about the situation. For the first time since I'd moved here I saw a disability community in Las Cruces, and it amazed me. It is one thing for people to learn of a problem; how they respond is something else entirely. For the first time since I've lived in Las Cruces, I saw people responding with anger and cohesion. The weekly independent living skills group at the center talked about what they could do. Disabled Las Crucens called each other and held meetings. People were not willing to let this woman return to a nursing home, nor to let the Center off the hook. At my friend's urging, I decided to attend the upcoming board meeting. Twenty or thirty consumers were there as well--as were representatives from the Department of Health and local media. This would be interesting, I thought. The board seemed concerned but confused; the Department of Health didn't help matters. It seemed the life of young woman in question was rapidly fading into nursing-home oblivion. The board had a choice: keep this woman out of a nursing home or wait for better answers. I believe that the decision¾to do what it took to keep this woman in the community¾was made only because of the presence of a vocal and determined audience. During this meeting a call had been made for candidates to be nominated to fill board positions of those whose terms were ending. By the end of the meeting, Lillian and I were determined to seek board membership.   The next board meeting we attended showed us a disability community fighting for control of the Center. Some were calling for the resignation of board members who were accused of violating their own by-laws by remaining beyond their terms of office. Others complained about a remark made by a board member suggesting blind people couldn't be attendants. Between then and the Annual Meeting slated for the end of August, we talked with our friends in the Rehabilitation Services Administration. We documented violations of board by-laws. We met with an attorney. We rallied people to attend. At the annual meeting, I was one of three new board members elected. But more happened at this meeting. The current board accused the executive director of fiscal mismanagement and of fomenting the insurrection that had occurred with consumers. By a vote of 3-2, they dismissed her. They then offered another staff member the position as interim director. That staffer declined, telling the board that, in light of the way the executive director had been treated, he was leaving. Then he left the building¾ along with most of the rest of the staff. What would happen to the Center, the board asked itself. Who would run things? I suggested that, given that there was no staff, the job would fall to the president of the board. The president, who'd been moved up reluctantly from vice-president when the president had left several months ago, didn't want the task. There was still no vice-president. Would the organization close? I took a deep breath, and said, "I know how to run an independent living center. If the board wants, I'll do it until a director can be hired." The board voted to accept my offer.   What I have found--and what I believe My initial perception that the Center had a core of good staff was accurate. But its structure was worse than I'd anticipated: policies and procedures were sloppy or nonexistent. Many staff had no training--one was unclear about what her job actually was. I spent most of my time those first few months trying to figure out Center finances. Now I also work to follow my agenda of transforming what I see as a social service agency into an advocacy organization. As Bob Kafka wrote in "Empowering Service Delivery," times have indeed changed. A decade ago I could not have imagined a Center doing some of the activities we now do. The biggest shock: we serve as payee for about a dozen people on Social Security. Yet I understand why we do it: these are folks who have been declared incompetent to handle their own money. As long as someone helps them do this, they can remain in the community. If we did not help them conduct their business, where might they end up? Back in that nightmare nursing home? The Center helps keep them out of that terror, just as surely as we all advocated for that young lady at risk of losing her personal assistance. As payee for these Social Security recipients, we provide a service both to these individuals, who still move freely within the community, and to the community, which doesn't have to spend more time and money on nursing home institutionalizations. The only ones who lose are the stockholders of the nursing homes who are not padding their pockets with more filled beds. The very first disability meeting I attended in New Mexico was about a waiver to keep people out of nursing homes. I thought the bill was terrible and spoke against it. Yet the bill for the waiver passed. And although it is still unclear how many people have been helped, now, four years later I am proud to be part of piloting a program that could keep many people in the community. All we have to do is follow the tortuous rules and regulations and changing vicissitudes of the State Department of Health, and find people willing and able to be personal assistants. This is not easy. But it is imperative. I will do everything in my power to see that it works. Because this is what this movement is all about.   Our real work is in the community I have heard longtime disability activist and CIL director Roland Sykes say that there cannot be a disability community as long as one of us is incarcerated in a nursing home. I don't agree with that blanket statement, but I do understand his passion. What have we worked for, if not to keep all of us out of those institutions that we do not want to be in? I did not believe in the 1980s, and I do not believe today, that people with disabilities are the primary clientele of CILs. I think communities are our real targets. If we do not change our communities, it won't matter what we do with specific individuals. If we don't have transportation, personal assistance services, adaptive technology, various forms of communication--and, most important, the conviction that people with disabilities belong equally in every aspect of community life--we will never keep people out of nursing homes. CILs in Kansas and Pennsylvania have been rightly honored for their liberation of people from the incarceration of nursing homes. Lucy Gwin, editor of Mouth, has even moved to Kansas because of that state's commitment to this philosophy ¾"The Free State," Gwin calls it, giving that old slogan new meaning. Steve Gold, a Pennsylvania attorney, has received awards from disability organizations for his role in liberating someone from a nursing home in a way that changed Pennsylvania's laws to require community integration. Actions of people in these two states have led to changes in the national political scene as well. The Nov./Dec. issue of Mouth contains a "Desegregation Tool Kit" showing how to effect these changes in other states. There are many ways to change communities. Whether change is accomplished by force of law or other means is irrelevant. Different tactics work in different places at different times. What does matter is the result. I think this is what Kafka was saying in his important article. Sticking to our convictions is meaningless if it does not get us desired goals. When independent living began thirty years ago, its goals were not so different: People wanted to live in the community. That objective has not changed. What has changed is our society. In the late 1960s, Medicare was a fairly new program. Prior to this time, our brothers and sisters with disabilities were institutionalized, but it was generally not in nursing homes. The nursing home curse is the result of the reform legislation of the Great Society and the way that the monied powers of this country figured out how to benefit from these laws. (Let's not kid ourselves: The issue of nursing home costs is not the real issue. The figures are clear: community integration is less costly than nursing homes. The issue is about profits. People profit from running nursing homes; that's why they exist.) I continue to believe that CILs are excellent models for social change and service provision--and that those two things do go together. Centers must target their communities as their primary clientele. CILs can be powerful tools for change, advocacy, and service provision--and service provision must be a part of the advocacy agenda of a center. People with disabilities need services; they need training¾and that includes people who work for, as well as seek services from, our centers. I still believe in the vision of integration. My perception of what integration means has changed, however. I no longer believe that integration signifies becoming like my nondisabled peers. I now believe that integration means that my nondisabled peers must accept my wheelchair and my pain and my fatigue--and live with it, not try to change it. (And that goes for every other disability condition that currently exists or will in the future.) I have never believed that CILs should be in the business of putting themselves out of business. There will always be new people with disabilities who will need some kind of support. I have never believed that CILs, simply because they are not-for-profit organizations set up for the public good, should operate unprofessionally or in an unbusinesslike manner. I have never believed that CILs should lie about our mission in order to cater to funding sources--my experience has shown me that funding sources appreciate hearing an advocate's honest appraisal. I have never believed that a CIL should pursue funding for its own sake. We have a mission to pursue, a vision to implement, a cause to serve--that people with disabilities are treated every day, in every way, with the respect and dignity that every living creature deserves. I came back to direct a CIL because I perceived--and could no longer tolerate--powerlessness. For I believe that CILs are about one thing and one thing only--power: The power of individuals to respect themselves; the power of society to respect one another; the power of services to be delivered to people who need them in an appropriate and timely fashion, without indignity; the power to change a society that has mistakenly convinced itself that anyone is of lesser value than anyone else. What are you, as an individual, as a member of an organization, or as a leader, doing to use your power for the benefit of every one of us? If you can answer in a way that makes you feel good, great. If not, do something. Feel your power and share it. The world can only become a better place because of your loving contributions. After much ambivalence and soul-searching, I decided this fall to apply for the permanent job as director of the Southern New Mexico Center for Independent Living. By the time you read this article, I'll know if I have been hired, and if the Center today agrees with the philosophy laid out in this article. --Steve Brown   Back to table of contents