CIL History by Hale Zukas
The Center for Independent Living, Inc., came into existence as a formal entity in March 1972, but its origins extend considerably further back in time and place; on occasion fortuitous circumstance has also played a role.
The roots of CIL can be traced to the Cowell Residence Program at the University of California, Berkeley. In 1962, Ed Roberts, a post‑polio respiratory quadriplegic, became one of the first severely disabled persons to be admitted to the University. Since he had to spend most of the time in an iron lung, it was decided that the only feasible living arrangement would be a room at the Student Health Service‑Cowell Hospital on campus. By 1966, two traumatic quadriplegics had also moved into Cowell; three years later there were 12 severely disabled students in the Cowell Residence Program, which had by then been formally established and was being supported by the California Department of Rehabilitation.
In 1969, the atmosphere at Cowell was a peculiar combination of disparate elements. On one hand, the CRP provided a quiet sheltered living situation; indeed, in its hospital location (albeit in a separate wing) it bore some resemblance to the custodial institutions to which disabled people are so often relegated. The residents of the Cowell Program, for the most part, confined their movements to the campus as there was considerable apprehension about traveling out into the community. In part this was because the electric wheelchairs then available were unreliable or had very limited range. Even if their chairs had been adequate to the task, however, the surrounding community was largely inaccessible to them. There were no curb ramps in Berkeley, for example, until a four‑block section of the main shopping street south of campus was reconstructed in 1969‑70; ramps were incorporated in this project at the urging of the Cowell residents.
This insularity also had its positive aspects, however. In the Cowell Program, residents were in close, continuing contact with other people having similar problems and concerns. A sense of unity and self‑confidence gradually developed, largely as a result of the free flow of communication and sharing of experience. The residents' political consciousness grew as they became aware of the degree to which control over their lives had been taken over by medical and rehabilitation professionals. They thus came to realize that the concerns about self‑determination raised by the black and student movements had considerable relevance to their own lives as disabled people. This consciousness‑raising process was accelerated in 1969 when the rehabilitation counselor assigned to the Cowell Program tried, with the support of all but one of the professionals associated with the program, to have two of its residents evicted because she deemed their educational goals unfeasible and their life styles improper. United as never before, the Cowell residents defeated the counselor in this effort.
As time went on, the residents found the bureaucratic and in loco parentis restrictions
under which they had to live at Cowell a source of increasing aggravation. Additionally,
by 1969 some residents were nearing the end of their academic careers and consequently would have to leave Cowell. The need for some kind of alternative to the CRP was thus becoming more and more apparent. In order to address this need in a systematic manner, most of the Cowell residents in the fall of 1965 organized their own class, called "Strategies
of Independent Living," under the University’s group studies program. Initially the major emphasis of the class was on developing a proposal for a communal living arrangement
which would be similar in some respects to the Cowell Program but which would be controlled by residents themselves and open to non‑students as well as students. After a few weeks of work on the proposal, however, it became apparent that establishing and operating such
a facility would be very costly and that funding would be extremely difficult to find.
In the meantime, Ed Roberts had learned of the Special Services program operating out of the federal Office of Education. Under this program various kinds of aid were available to disadvantaged students to enable them to successfully pursue college studies. In the establishing legislation Congress had expressed its intention that ten percent of the appropriation for the program be allocated to services for physically disabled students. It was reported that the Office of Education would be very receptive to a proposal for a program of services to disabled students on the Berkeley campus. Consequently, the students in the class put aside the establishment of a communal living arrangement and turned their attention to developing a program of supportive services which would enable severely disabled students to live independently and function more effectively as students.
Defining the services which should make up such a program was a relatively simple and straightforward process. The students drew on their own experience and figured out what services they would need in order to live independently in the community. They would need a pool of people available to help them in getting up, dressing, bowel and bladder care, preparing meals, and the many other activities of daily living that anyone leading an active life must perform. They would need fast, reliable wheelchair repair, for without a wheelchair in operating condition they were little better off than if they were bedridden. They would need assistance in obtaining the financial benefits and services to which they are entitled from other agencies, so they would have the resources needed to lead independent lives. Accordingly, an attendant referral service and provision for emergency attendant care, a wheelchair repair service, and an advocacy component were incorporated into the proposed program along with a component devoted to helping disabled students deal with University‑related matters, such as pre‑enrollment, getting classes moved to accessible locations, and making special arrangements for examinations when necessary.
The fact that the idea for a services program, on the one hand, came about largely for expedient reasons (namely, the exigencies of funding) and, on the other hand, was a logical outgrowth of the students' past experience might lead one to overlook its enormous significance for disabled people, not only in Berkeley but throughout the country. The approach envisioned in the proposed Physically Disabled Students' Program (PDSP) was a radical departure from past practice in the medical and rehabilitation fields. In contrast to the fragmentation which characterized the existing services, the PDSP would take a holistic, integrated approach by providing a comprehensive array of services in recognition of the fact that disabled people are likely to have a variety of needs, and functional independence will be hard to achieve unless all those needs are met. Self‑evident though this may seem in hindsight, such an approach had, to our knowledge, never been tried before.
Over the years, the Cowell residents had evolved what might be called a philosophy of disability out of their collective experience. In the proposal for the PDSP the three guiding principles of this philosophy were clearly articulated for perhaps the first time. They were the following:
1. Those who know best the needs of disabled people and how to meet those needs are the disabled people themselves.
2. The needs of the disabled, can be met most effectively by comprehensive programs
which provide a variety of services.
3. Disabled people should be integrated as fully as possible into their community.
Most of those active in the development of the PDSP were spinal cord injured, and they were naturally primarily concerned with services that would meet their own needs. But there was also an awareness on the part of some of those involved that broadening the program to serve people with a wide range of disabilities, including the blind, could be beneficial to all concerned. In addition, it was hoped that establishing a working relationship between disability groups which had traditionally had little to do with one another would lead to a coalition which could exert increased influence in the political arena. It was consequently decided that there would be blind representation on the PDSP staff.
Funded in July 1970, the PDSP began full operation two months later with a full‑ and' part‑time staff of nine, of whom five, including the director, were severely disabled or blind. During its first year, the PDSP provided a clear demonstration of the validity of the premises on which it had been founded. Disabled students began moving from Cowell out into the community; the drop out rate was almost nil compared to that among disabled students at other institutions of higher learning; and there was a sharp reduction in medical problems. The effectiveness of different disability groups working together was also shown. Not only did the extent to which their problems and needs coincided become apparent, but services originally tailored to the needs of orthopedically disabled were adapted to the needs of the blind. For example the attendant referral service was expanded to also provide readers for the blind.
That the PDSP was providing needed services unavailable anywhere else was indicated by the steadily growing volume of requests for assistance it received. At first, these requests came from students, but as word of its unique services spread through the surrounding community, more and more disabled non‑students began to call upon the PDSP for help. The PDSP rarely if ever turned people away on the grounds that they were non‑students. By the Spring of 1971, the time devoted to community people had begun to seriously affect the PDSP's ability to meet the needs of the students whom it was established to serve. Out of this dilemma arose the idea of establishing another program parallel to the PDSP to serve disabled and blind people in the surrounding community. Thus the seeds of the Center for Independent Living were planted.
At the instigation of the PDSP administration, a group of interested disabled people, including both students and non‑students, met in May 1971 to begin discussing how to put together a community‑based services program. Over the next year, this group put in many hours of work toward this end, meeting an average of once a week.
From the beginning there was a firm commitment not only to the three principles outlined on page three, but also to the principle that CIL would be an organization of and for all disability groups, more specifically, a coalition of the orthopedically disabled and the blind. These two groups had traditionally gone their separate ways, and in this pioneering attempt to work together, it was only to be expected that strains would occasionally develop in their relationship. By its very nature a coalition is a gathering of groups with different interests which come together to pursue some larger objective. Making any true coalition work thus requires a conscious effort. Those involved in organizing the CIL made this effort; the resultant benefits accruing to both the disabled and blind have shown that it was eminently worthwhile.
For example, wheelchair curb ramps in Berkeley have been placed so the blind will continue to have the detectable curbs they need in order to know when they are about to cross a street.
It was after the idea of coalition between the disabled and blind spread beyond CIL to groups active in the political arena, however, that it produced its biggest dividends. For the first time the disabled came to be recognized as a force to be reckoned with in the California legislature. Their efforts were in no small part responsible for the fact that SSI benefit levels in California are just about the highest in the country.
The groundwork laid by the PDSP was of inestimable value in defining the general approach and methodology the CIL would follow. The task entailed in establishing the CIL, however, differed in several important respects from that which faced the founders of PDSP. For one thing, the populations to be served by the two programs were quite different. The disabled students at the University were a relatively small and homogeneous group, residing for the most part within a limited geographical area, and readily identifiable. The target population envisioned for the CIL, on the other hand, was considerably larger and very heterogeneous, spread over a comparatively large area, and in large part very hard to identify, let alone reach. Those involved in the development of CIL were well aware that they were not representative of the disabled population of the community at large. They were thus very conscious of the need for community input into the design of services and, once those services were in operation, into their evaluation.
Secondly, obtaining funding for the CIL was more difficult than for the PDSP; other than the in‑kind support provided by the PDSP, its only resources during this period were occasional contributions from some of those active in the organization, proceeds from a few benefit poker games, and a $250 donation from the local Rotary C1ub.
In July 1972, three months after its incorporation, the CIL received a one‑year $50,000 grant from the federal Rehabilitation Services Administration to enable it to get on its feet organizationally and to do a systematic job of research and planning for a comprehensive community‑based services program for the disabled and blind. During most of the grant period, the major emphasis of the CIL was on developing a proposal for such a program costing, in its various forms, from $250,000 to $400,000 per year. As the expiration of the grant drew near and prospects of new funding continued to prove fruitless, the CIL staff lowered its sights considerably, and the prime objective became, not expansion, but simple survival. In the last week of June 1973, the CIL was informed that a renewal of the planning grant, its last hope, would not be forthcoming. At this point the CIL was in serious danger of going under. In an attempt to avert this eventuality, a few CIL staff members, along with Ed Roberts and John Hessler, Director of the PDSP, met with University Vice Chancellor Robert Kerley to ask for his help. Through Kerley’s personal intercession $15,000 was made available through the University’s Community Projects Office to keep the CIL afloat for another four months. In August the City of Berkeley allocated $15,000 to the CIL to cover a year's overhead costs, principally rent and utilities. Even though these two grants by no means assured the CIL s future, there was a strong feeling among the staff that there had been enough of planning and it was time to get down to the business at hand and start delivering direct services, without regard to what the future might hold. In September 1972, the CIL established its own attendant referral service, giving limited help with locating housing, and providing transportation with a donated Volkswagen van.
The University money stopped in mid‑November 1973, and the CIL became essentially dormant. Understandably, demoralization among the staff was widespread. In late December, however, word was received with great rejoicing that the San Francisco Foundation had approved the ClL's application for $30,000. Regular operations were resumed with the start of the new year. In March 1974, the long search for a facility to replace the two‑bedroom South campus apartment which had been the ClL's base of operations since August 1972, culminated in a move to a much larger and more centrally located quarters in the downtown area. At about the same time, the CIL was allocated approximately $35,000 on a six‑month basis from Alameda County revenue‑sharing funds. With the reasonable expectation that each of the current grants would be renewed, a relatively firm base of financial support had been established which assured that CIL would be able to maintain at least a modest level of activity over the next several years.
While it would have been desirable to obtain funding for the CIL in one comprehensive
package, experience had thus shown that the only feasible strategy was to fund CIL on
a piecemeal basis through an accumulation of relatively small grants. The CIL has continued
to pursue such a funding strategy in the intervening period with considerable success, and
several new programs have been established as funding has become available. The
multiplicity of funding sources and the accompanying rapid expansion makes it difficult to
chart, except in very general terms, the direction CIL should take in its future development.
One thing has not changed, however: the ClL's overall objective is still eminently well
described by its name.