The need for Independent Living programs: an historical context and summary of progressive independent living services

In this early article, Bruce Curtis, of the Technical Assistance Project, Center for Independent Living in Berkeley, California, traces the history of forced dependency and institutionalization which has and often continues to be the lot of disabled persons. Basic denial of disabled people’s human and civil rights led to the 1972 establishment of the Center for Independent Living in 1972 in Berkeley – a rights advocacy and service organization developed by and for disabled people. Curtis outlines the various components of the center’s activities. Internet publication URL: www.independentliving.org/docs1/curtisbneed.html

People who have severe disabilities have lived under centuries of legalized dependency and ostracism. With every law that showed the liberalizing of society's commitment to disabled people has come the realization by disabled people that discrimination in the community didn't really end. This discrimination continued because oppressive changes were introduced to limit society's obligations and the few progressive changes that were introduced were never supported financially. It has become obvious that institutional prejudice shall not be overcome by good intentioned but uncoordinated and financially unsupported changes.

People with disabilities have a long history of forced dependency. King Henry VII in 1504 legally authorized the disabled to beg without fear of punishment. The English Poor Laws of 1601 mandated that the primary responsibility for care of disabled people was with their families. If the family couldn't or wouldn't provide adequate care, then a disabled person would go to live in an alms house. In the late 1700's and early 1800's, alms houses became very popular throughout the states for disabled people and the poor. People who had different disabilities were put in these institutions due to the lack of money and a generally custodial attitude by society. In most states there are still institutions for disabled people to live in, though there are often different buildings for people with different disabilities. The filthy and dehumanizing conditions of 250 years still exists in many of these modern institutions because of the same attitudes and lack of fiscal support.

Sterilization of criminals, people who are epileptic, or mentally ill, and the poor became popular around 1910 with the added alternative of life-long sexual segregation of people who were mentally and physically disabled in custodial institutions. By 1937, 28 states had laws allowing the sterilization of "defective" human beings in order to reduce the genetic possibility of more disabled people. Some cities passed ordinances which are still the law today, prohibiting the appearance in a public place by any person who is "diseased, maimed, mutilated or in any way deformed so as to be an unsightly, or disgusting object". The Immigration and Naturalization Service can still deny a permanent visa to an immigrant or a member of their family who has a physical defect, disease or disability. People who are deaf, under old common law, could not be a witness, make a contract or a will, due to an assumption of incompetancy. They still cannot serve on a jury in some states and cities.

With these centuries, even millenia of prejudice and oppression, society has made our dependency seemingly inescapable. Many disabled people, cannot work except in sheltered workshops at often less than the minimum wage. Many physically disabled people cannot travel on commercial transportation without submitting to patronizing assistance or inconveniencing regulations that vary from company to company. Many disabled people cannot live in their own homes because personal care attendants will only be paid for by society if they live segregated in institutions. There have been numerous cases of parents who are disabled, having their children taken from them because the child would not he raised in a normal environment. In divorce proceedings between a disabled and a non-disabled parent, custody has been awarded to the non-disabled parent based on this kind of prejudicial concept of normality.

People with disabilities, especially people who are mentally retarded are thought of as non-sexual because to recognize their sexuality is to recognize their common humanity, and therefore their human rights. People who are mentally retarded are, in many states, being legally sterilized by their parents with the help of courts empowered through legislation.

It is under this kind of basic denial of our human and civil rights that disabled people existed with little or nor services. What service that were provided were full of bureaucratic red tape and regulations that kept us dependent. There was no coordination of available services that would break through this vicious cycle of dependency. With this in mind, people with disabilities organized the Center for Independent Living in 1972: An organization that would protect the civil rights of disabled people, change the physical and attitudinal environment and enable us to live independently in an integrated community, by providing a whole range of services. The C.I.L. is not a residential facility where disabled people come to live and have all their needs taken care of. It is not a transitional facility where you can live until you have learned the skills necessary to live alone in the community. Neither of these two residential models affect more than a few disabled people and neither attempt to change the community so that disabled people can live independently if or when they leave a facility.

There are primarily two components of C.I.L. services and advocacy. The following listing of services represents over seven years of growth. Disabled people planned, prioritized and developed these services in coordination with other existing community services because only through a holistic approach to the daily living problems of disabled people can we be truly functional.

 

Services

  • Intake and follow up counselors explain C.I.L. services, make appropriate referrals within C.I.L., and offer supplementary referrals to community resources.
  • Attendant referral counselors interview, screen, and refer prospective attendants to disabled and elderly people who need help with personal care and housekeeping needs.
  • The deaf services projekt is making all of C.I.L.'s services accessible to the multiply disabled, aged deaf, and the deaf community in general by coordinating interpreters for clients who have appointments at C.I.L., making necessary phone contacts and making referrals to appropriate agencies.
  • The housing department assists people in locating and securing accessible or suitable housing in the Berkeley-North Oakland area and provides consultation on leases, moving, ramp construction, and the Section 8 Rent Subsidy Program.
  • C.I.L.'s transportation service provides door-to-door accessible transportation to people who cannot use public transportation.
  • Services for visually disabled include: mobility instruction and orientation, peer counseling, transportation, reader referrals, independent living skills instruction, pre-vocational counseling, senior citizen support and resource center, talking book certification, and information and referral.
  • Peer counselors do individual, group, couple, and family counseling, assisting disabled individuals, their families, and mates in coping with the emotional aspects of disability.
  • Independent living skills counselors offer advice on home modifications and aids, and instruction in basic independent living skills - budgeting, nutrition, cooking, pre-vocational work evaluation/training.
  • Substance abuse counselors provide both prevention and treatment services for potential and actual substance abusers and their families.

Advocacy

  • The disability law resource center focuses on community involvement in the disabled rights movement by coordinating C.I.L.'s law-related advocacy, outreach and education projects:
  • The legal services unit provides direct legal counsel in the area of disability discrimination through funding from the Legal Services Corporation.
  • Public assistance advocates provide counseling, education, and representation to clients on local, state, and federal financial and medical programs.
  • The ombudsman unit does outreach and advocacy work with current and potential Department of Rehabilitation clients.
  • The community affairs department, utilizing the legislative process, works toward the removal of physical, economic and social barriers at the federal, state and local levels.
  • The regional support unit gives technical assistance and support to local organizations to further community understanding of the independent living concept.
  • The 504 project provides training and assistance on Federal Regulation 504, including community organizing and negotiating skills.
  • The rehabilitation services administration projects (RSA) is training Department of Rehabilitation personnel in disability rights.

Job development, training and education

  • The job development program assists disabled job seekers with employment goal identification, resumé writing, interview skills, and job search techniques. Job-ready clients are referred to listings, job orders, and employer contacts.
  • The computer training project trains people with severe disabilities in computer programming and places them in jobs in industry with the help of an advisory committee of representatives from major corporations.
  • The kids project is working with educators, parents, and children to develop a receptive environment for mainstreaming disabled elementary students into the public school system.

Business enterprises

  • The wheelchair repair shop services and modifies all major brand push and power wheelchairs, offers advice on purchase of wheelchairs and other orthopedic equipment, and sells wheelchair accessories.
  • C.I.L.'s machine and automotive shop modifies vans and automobiles, and installs hand controls, wheelchair lifts, ramps, and tie downs.

Research and evaluation

  • C.I.L.'s Wheelchair Design Project is developing power wheelchair prototypes with exceptional mobility and performance for eventual marketing.
  • The equipment evaluation project conducts product-testing, from the consumer's viewpoint, on a wide range of rehabilitative equipment, and reports on results to the Veterans Administration.

Consultancy

Experienced staff members can provide consultation, on a sliding fee schedule, in the following areas: State and Federal Laws and Regulations Applying To: non-discrimination, affirmative action, and reasonable accommodation; Public assistance programs; architectural and transportation accessibility standards and specifications. Technical Assistance In: architectural barrier removal; job re-structuring program and services development; fund-raising; equipment design. Staff can also develop training workshops and classes in disability awareness, peer counseling and the above-listed areas.

Advocacy in the community, the state, even the country is necessary if the accumulated barriers, physical, attitudinal and legal are to be eliminated. C.I.L. has begun the task in many areas through consciousness raising and the passing of new laws that are enforceable and financially supported. Some accessible housing is starting to be constructed, but the law mandating accessible housing is not always enforced. Transportation systems are buying accessible buses but not in all cities and often not without a court fight. Sign Language Interpreters for the deaf are now being scheduled for some public meetings but almost always people who are deaf or hard of hearing are excluded from participation in their community activities. They are usually never considered when meetings are planned or held because of the assumption that people who are deaf aren't capable of participating or contributing. Some T.V. networks are agreeing to caption some of their programs, but there isn't agreement among the major networks on which technology to use. Disabled roles in movies and T.V. programs, are still portrayed by non-disabled actors/actresses. The reason given for this is that there can't be found any experienced disabled performers. This is the same reasoning that justified white actors performing in black face. People who are mentally retarded are being de- institutionalized by legislative action but the communities don't want them living in halfway houses next door. It seems some people are afraid property values might go down if there was a halfway house in their neighborhood, so zoning laws are passed against them.

The Center for Independent Living is actively trying to make changes around issues like these in our society. There are similar centers like C.I.L. throughout California. Michigan, Massachusetts and New York. Many other centers are being currently developed in states like Texas, Missouri, Washington, New York and Pennsylvania. More are in the process of being developed, especially with the passage of the Rehabilitation Act Amendments of 1978 which authorized money for the development of similar centers. We have helped many disabled people who have asked for assistance in setting up centers committed to the same principles as C.I.L.

We know integration and independence in the community is possible for people who are severely disabled because through the Center for Independent Living and other centers like it, people with disabilities have found the power of unified action. We have begun to take control over our lives in this society. We have issued a challenge to the centuries of fear and prejudice by those who are temporarily able-bodied. We will not accept laws without teeth to enforce them or enough money to implement them. We don't accept the cost of implementing our civil rights as a legitimate objection to our integration into society. We will not be hidden away in institutions anymore. We will not be second-class citizens, patronized by good-intentioned professionals.

We have found our power because we are your brothers and sisters and mothers and fathers. We are part of your future.

Unpublished article by Bruce Curtis, Technical Assistance Project, Center for Independent Living, Berkeley, Ca.

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