The Road to Independent Living in the USA: an historical perspective and contemporary challenges

The authors (Kathleen Martinez, US National Council on Disability member and Deputy Director, World Institute on Disability, and Barbara Duncan, former Rehabilitation International information officer, DisabilityWorld co-editor) highlight the events and leaders that made the birth of the independent living movement possible. Also included are some basic philosophical tenets and assumptions that have guided the U.S. IL movement, as well as some observations regarding emerging issues and trends. Reprinted form "Disability World, A bimonthly web-zine of international disability news and views," Issue no. 20 September-October 2003. Internet publication URLs: www.disabilityworld.org/09-10_03/il/ilhistory.shtml and www.independentliving.org/docs6/martinez200309.html

by Kathy Martinez, with the assistance of Barbara Duncan
Reprinted form Disability World, A bimonthly web-zine of international disability news and views,
Issue no. 20 September-October 2003

 

Background

As with most major social changes or phenomena, the Independent Living (IL) movement did not happen over night in the U.S. There were many significant events in the 1960s and the 1970s that led to its rise and continue to shape its ongoing transition and growth. When I think of the IL movement, I think of a train with many cars on some bumpy track of evolving social consciousness. Some of these "cars" include the challenging of the charity model, the fight for access to education by parents of blind children and children with polio, and the struggle for civil rights by racial, ethnic, social minorities and women. These social movements gave disabled people ideas, strategic advice and the nerve to develop what we currently refer to as the Independent Living Movement.

In this paper, I will highlight events and leaders that made the birth of the independent living movement possible, knowing these have been described in greater detail in the books and references listed at the end of this article. Also included are some basic philosophical tenets and assumptions that have guided the U.S. IL movement, as well as some observations regarding emerging issues and trends that are currently challenging the foundations of the IL movement. Among the challenges are how to look beyond wheelchair ramps and brailled elevator panels to expand the vision and scope of IL in the U.S. so that it truly does integrate people of all ages, ethnic backgrounds and disability types. Finally, I will describe the dilemma presented by ethnic groups who wish to benefit from IL services but are questioning the service models that are based on the values held by the dominant culture.

Author's approach and experience

Blind since birth, my formative experiences were as a student in one of California's earliest integrated public school programs and as one of six children who was expected to "do well in the world." While a teenager, I was involved in both the women's movement and the farm workers movement, but without feeling completely "included." Organizers of those movements found it difficult to get past my blindness and make use of my skills. So, in April of 1977 when handed a Braille flyer about a civil rights protest by disabled people being held in San Francisco, I had no doubt I had to attend. This event, bringing together hundreds of people with every imaginable disability, and their allies, was the critical development that landed me in the midst of the emerging disability rights movement, led in Berkeley by such luminaries as Ed Roberts, Judy Heumann and Gerald Baptiste, a black, blind advocate working for the Berkeley Center for Independent Living. As a Latina, I was so impressed to see such a varied mix of ethnicities, ages, races and disability types, as well as support from the broader civil rights community.

In the early 1980s, living in Mexico exposed me to the realities of most disabled people in developing countries of the world: no sidewalks, no transportation, no services, no awareness of disability as a social issue. This experience, together with an extended exchange trip to Japan and a professional visit to Nicaragua, served as the foundation of my interest in international disability rights. Subsequently I worked as the director of blind services for the Center for Independent Living (CIL) in Berkeley, which taught me to work on a daily basis with people with other types of disabilities. Since the concepts of "accommodations" and "personal assistance" were still more on paper than available in the workplace, CIL employees created their own symbiotic support systems, such as blind people carrying out physical tasks, while physically disabled workers served as readers or guides.

In 1992 I began work at the World Institute on Disability, the first disability-led organization to promote independent living philosophies and policies worldwide. In the last decade major initiatives I have participated in include the 1995-2000 International Disability Exchanges and Studies (IDEAS) project, the 1997 International Leadership Forum for Women with Disabilities and the 1999 International Summit on Independent Living. These projects and other international leadership development grants administered by WID have given me the opportunity to work closely with U.S. and international leaders in IL.

My approach to this paper is not an academic one, but rather a brief historical overview based on events and my observations of developments, as well as quotes from leaders and historians of the IL movement. At the end of the paper are recommended books, studies, articles or websites that discuss the movement in greater detail.

The early years: out of the public eye

From the 18th to the early 20th century, as was the case in many countries, the majority of significantly disabled persons in the U.S. either died prematurely due to lack of medical treatment, were sent to asylums or institutions or lived hidden away in the houses of their families. Deaf or blind children thought to be intelligent were often sent away to special schools far from their hometowns. Almost every State had laws, (some staying on the books as late as the 1990's), which either prohibited or strongly discouraged disabled people from being a part of public life. In his article "A Little History Worth Knowing," (www.acils.com/acil/histknow.html) Timothy Cook cites examples of language found in State laws pertaining to people with disabilities:

"The Alabama legislature declared them 'a menace to the happiness...of the community.' A Texas law mandated segregation to relieve society of the 'heavy economic and moral losses arising from the existence at large of these unfortunate persons.' In Pennsylvania, disabled people officially were termed 'anti-social beings;' In Washington, they were described as 'unfitted for companionship with other children;' in Vermont, a 'blight on mankind;' in Wisconsin, a 'danger to the race;' and, in Kansas, 'a misfortune both to themselves and to the public."

"In Indiana, we were required to be 'segregate[d] from the world;' a Utah government report said that a 'defect wounds our citizenry a thousand times more than any plague;' and, in South Dakota, we simply did not have the 'rights and liberties of normal people.'

"The United States Supreme Court, in an opinion by Justice Oliver Wendall Holmes upholding the constitutionality of a Virginia law authorizing the involuntary sterilization of disabled persons, ratified the view of disabled persons as 'a menace.' Justice Holmes juxtaposed the country's 'best citizens' (non-disabled persons) with those who 'sap the strength of the state' (disabled persons), and to avoid 'being swamped with incompetence,' ruled: 'It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind."

This gives an idea of the sort of language and viewpoints embedded in legislation designed to keep us separate from "citizens at large" and to legally diminish our rights and roles in the community. These laws were revised or abolished only a short time ago. It's an important part of our history: all of us know someone who spent involuntary time in an institution.

Windows of enlightenment

Even with these laws on the books, the US began to experience a slight shift in attitude toward primarily deaf and blind people in the 19th century. We can see this shift take place as educators begin to experiment with developing schools for the deaf and blind because of the "emergence" of sign language and the development of the Braille system.

In 1817, the first U.S. school for the deaf was opened in Hartford, Connecticut, and by 1864 the Colombus Institution (later the National Deaf-Mute College and now Gallaudet University) offered its first degrees. In 1880 the first advocacy group was formed by deaf people in the U.S. to oppose the forced introduction of "oralism" and the ban on the use of sign language in schools for the deaf. Deaf students were schooled in separate residential institutions that gave rise to a strong "deaf culture," that often continued after graduation through a network of "deaf clubs," deaf sports groups and connections made through industries known for hiring deaf employees, such as printing.

In 1832, the Perkins School, the first U.S. school for blind children, was established in Massachusetts and put to use an evolving Braille system. These U.S. residential schools for deaf or blind students were usually begun with the help of instructors provided by already established schools in Europe, according to Nora Groce in "The U.S. Role in International Disability Activities."

20th century developments

As in other countries, services for disabled adults made huge leaps forward following wars. Therefore, just following World War I, both the Veterans Vocational Rehabilitation Act (1918) and the Fess-Smith Civilian Vocational Rehabilitation Act (1920) were passed.

In 1927, the Warm Springs Foundation facility for polio survivors became a model rehabilitation and peer counseling program. Many of the early IL leaders with mobility impairments recall Warm Springs and/or summer camps for disabled people they attended as teenagers to be the basis of their awakenings as a group with common experiences and oppressions.

At the same time, deaf or blind leaders recall their experiences at residential schools, clubs and recreational programs to have been formative in group consciousness and self-identification. Beginning in the 1930s, Jacobus tenBroek, a well known University of California law professor and founder of the organized blind on both national and international levels, was one of the first to take disability identity and group consciousness to a political level, insisting that blind people be their own spokespersons. His paper, "The Right to Live in the World: the Disabled in the Law of Torts," published in a 1966 issue of the California Law Review, was one of the earliest to write about a rights-based approach for disabled persons.

During the 1920s, 1930s and 1940s a number of charity organizations were established. The original purpose of these organizations was to obtain cures for "crippling" polio or paralysis and cerebral palsy. In addition, some of these organizations provided financial assistance to disabled children and adults or their families to purchase equipment such as wheelchairs, crutches and respirators. These organizations included: Rotary International, Rehabilitation International, Easter Seals, The March of Dimes and United Cerebral Palsy.

For nearly 12 years of this era, the President of the U.S. was a wheelchair user due to polio contracted as an adult. There is no doubt that President Franklin D. Roosevelt (FDR) greatly supported the efforts to develop a polio vaccine, but there is less agreement about whether he served as an effective role model for disabled persons since the magnitude of his disability was largely hidden from the public. (See Gallagher reference at end of article)

At this same time, new advocacy organizations were developing their programs, mostly for adults: The National Federation of the Blind, The National Association of the Deaf, The National Federation of the Physically Handicapped and the National Mental Health Foundation. The National Mental Health Foundation was one of the first groups (primarily comprised of mental health workers) to support the concept of de-institutionalization.

Post World War II

In the years just following WWII, a few new role models for living with a disability emerged, namely Harold Russell, a disabled serviceman asked by President Truman to run the newly established President's Committee on Employment of the Handicapped; Henry Viscardi, whose book, "Give Us the Tools," with a foreword by Eleanor Roosevelt, outlined his approach to self-employment for significantly disabled persons; and Helen Keller, already a well known author but now taking up a new role as an international spokesperson for disability and social causes such as the UN. Following in the "footprint" of FDR, these three individuals seem to have had a similar emphasis on demonstrating how independent disabled individuals could be, provided with minimal assistance and maximum opportunity.

In the 1950s, the US experienced a dramatic increase in the population of children who were surviving with polio and children who were blinded as a result of being given too much oxygen in incubators at birth or by rubella epidemics. Neither the schools for the blind and deaf, nor the schools for crippled children could accommodate this surge in new students. Parents and advocates in the education system began to demand that this overflow population of children be allowed to attend the public schools, thereby laying the groundwork for mainstream education.

Also in this era, the first disabled college students program was begun at the University of Illinois where classrooms and other university facilities were made more accessible for primarily wheelchair users. Several future leaders of the IL and disability rights movement attended this university, notably Kitty Cone and MaryLou Breslin.

Education as a catapult into the community

In 1962, the first residents program was introduced at the University of California at Berkeley, where students in wheelchairs could actually live on campus. This residence program was first placed in the wing of the campus hospital. One of the first students accepted into this program was Ed Roberts, who the university had reluctantly admitted following a wave of publicity depicting him as "Helpless Cripple Goes to School." Disability historians pinpoint this as a pivotal event in the founding of the IL movement. It took almost 20 years before the disabled students were moved into the regular dormitories.

It is well known in the blind community that the University of California accepted blind students beginning around 1928. Winifred Downing, editor of "The Blind Californian," and activist since the 1950s, recalls that the group of blind male and female students who attended the University of California from the 1930s to the 1950s had one of the highest employment rates of blind people in the history of the country. Interviewed for this paper, she attributed this phenomenon to the first rate faculty at the California School for the Blind, under the guidance of Newell Perry, a blind American mathematician educated in Germany, who brought in exceptional teachers from all over the world.

Perry also convinced the Berkeley school district to accept blind students at Berkeley high school, thus helping to prepare them for university life. In fact, Prof. Jacobus tenBroek, graduated from Berkeley High, brought to the U.S from Canada at an early age because his parents had heard blind children could be schooled in California. Additionally, although not accessible to the physically disabled in these early years, the local Berkeley transportation system of buses and light rail was well developed and enabled both blind and deaf people to attend classes and go to work.

Basic building blocks of independent living now in place

So, we have in place some of the major building blocks of independent living: a growing number of physically disabled, blind and deaf students entering primary, secondary and higher education; new parent groups demanding services for their children; a range of new advocacy groups promoting self-representation and exploring group identity; and national laws guaranteeing the rights to rehabilitation and vocational services.

In the late 1960s and early 1970s, strong civil rights battles were being waged throughout the country, providing examples of tactics and strategies such as demonstrations, actions to gain visibility in the mass media, legislation, litigation, consciousness-raising meetings and development of a supporting body of "protest literature". Progressive disability groups learned from these social movements, borrowed these "tools for change" and began to adapt them to the disability experience.

Useful tools of other social movements

One of the most powerful tools of these social movements, subsequently utilized by the IL movement is the concept of self-representation: meaning that, for example, only African-Americans were empowered to speak on behalf of the black civil rights movement; male professors specializing in feminist studies were finally moved aside as spokespersons for women; people who had picked grapes for a living were at the head of the boycott efforts on behalf of seasonal laborers; and gay people decided to "come out of the closet" to advocate on their own behalf, supplanting psychologists and psychiatrists. Until this moment, the disabled population had been primarily represented in public, in the media or before Congress by doctors, academics, charity workers and, occasionally, parents.

Unlike ethnic and racial minorities, but similar to the gay community, disabled individuals often are isolated from other disabled children or adults and cannot draw upon on their families or those around them to develop their identity. Also similar to the gay population, until disabled persons managed to advocate in their own right, the medical and social service professions defined their issues and represented their views. Therefore, when disabled people got together for the first time as a minority group and began to develop and deliver their own messages, this was uniquely empowering to them and, at the same time, shocking to a public who had never encountered this phenomenon, and perhaps threatening to rehabilitation professionals.

Peer counseling

Another tool, perhaps used most effectively by the women's movement, was peer counseling or at its earliest stage, "consciousness raising." In the women's movement this was both an educational strategy, exemplified by the successful, landmark low-cost book, "Our Bodies, Our Selves," which gave women physician-free, practical information on how their bodies worked, and a liberation tactic-showing women how to organize and strategize based on their own gender-specific experiences. Disability groups on both coasts and several states were quick to capitalize on this approach, developing opportunities to educate each other and establishing their own pool of shared experience as a base of expertise about living life with disability. Similar to the women's movement, this was both an educational effort---conducting outreach with isolated groups and individuals who had not had the opportunity to compare and contrast experiences---and a liberation tactic---demonstrating to peers that their own disability-related survival and adaptation techniques were powerful. Simplistically, as women learned to trust that their gender-based experiences gave them a strong common ground, so did disabled individuals teach each other that their peer experiences of discrimination and devaluation give them a common ground, regardless of type of disability.

Developing spokespersons

Often in the early years of the disability movement, leading spokespersons were blind such as Helen Keller and Jacobus tenBroek. Some of the earliest disability legislation benefits the blind population specifically. My theory about why is that blind people, unlike the physically disabled, could get up the steps and into meetings, schools and the workplace. They could represent themselves. Unlike the deaf population, they could speak the language of the dominant culture. Even today, there are some remnants of the "preferred position": it's still easier for blind people to receive benefits and to work with the least penalties from the Social Security system.

Concerning the IL movement, its earliest iteration concentrated on access issues for physically disabled people, but has grown to encompass measures to integrate and include other groups such as those who are deaf, blind or have cognitive or psychiatric disabilities. During this same period, blind and deaf groups in the U.S., as in other countries, have maintained their position that choices must include the option to attend their own specialized schools.

Early Sites of IL Activism in USA

Based on discussions with IL pioneers, a number of centers were being created in the early 1970s with a variety of approaches. In 1972 the Center for Independent Living of Berkeley was established by Ed Roberts, supported by a group of people with various disabilities. Although the disabled students were somewhat able to get around the University campus, once Ed and his fellow students graduated, they realized they could not live in inaccessible Berkeley without major changes to the physical and programmatic infrastructure of that community.

Ed and his colleagues knew that certain services must be in place before people with significant disabilities could live independently in their communities. These services included: attendant care so that those who couldn't perform tasks of daily living for themselves could be assisted in their homes, wheelchair repair, and organizing themselves to begin advocating for physically accessible sidewalks, buildings and transportation. As far as we know, this was the first time that people with a variety of disabilities came together as a group to begin to advocate for themselves, experiment with different community organizing approaches and to teach those skills to other disabled people. This process of learning, developing and passing on advocacy and organizational skills became the core of peer counseling and one of the cornerstones of the IL movement.

These were the initial services provided by the Berkeley Center for Independent Living (CIL) at its inception. Later in its development both blind and deaf service departments were created and it is still one of the few IL centers in the country to offer specialized services to each of these populations.

At approximately the same time, around the country many other small initiatives developed, including a self-help collective in Boston, a group exploring cooperative approaches to supported living in Houston, a group experimenting with living outside institutions in St. Louis, and a similar group working to enable people to leave institutions in Denver. (see Timelines and other references at end of article)

As journalist Joe Shapiro reported in his popular history, No Pity, "In 1977, according to disability policy expert Margaret Nosek, there were just 52 independent living centers in the United States. Within a decade, there would be close to 300, all bringing a similar fervor of advocacy and group activism."

Parallel rise of national cross-disability efforts

At the same time in the early 1970s, the large annual meetings of the (then) President's Committee on Employment of the Handicapped held every spring in Washington, D.C. were making it possible for disability activists across the country to meet each other. For many, it was the first opportunity to meet with other disabled adults. After a few such meetings, a group met in 1975 to assemble a board of directors for the American Coalition of Citizens with Disabilities (ACCD).

Although many of the members were wheelchair-users, it is significant that the first Executive Director was Frank Bowe, Ph.D., then a young deaf scholar. From 1969-71 he had served as a research assistant for Mary Switzer, the powerful head of the federal vocational rehabilitation system, who provided support to several early disability activists. Bowe's reports and books were among the first to document the disability rights movement, including: "Coalition Building: feasibility study to develop a national model for cross-disability communication and cooperation," (1978); and "Handicapping America" (1978). Bowe remained Executive Director of ACCD through 1981, the UN's International Year of Disabled Persons, and was one of few disabled experts selected to represent their country at UN meetings about the Year.

Other ACCD officials who were important proponents of the IL philosophy were the President, Eunice Fiorito, a fiery blind leader who was New York City's first director of its disability office; and the Secretary, Lex Frieden, a wheelchair user who in 1977 set up the Independent Living Research Utilization program within The Institute for Rehabilitation and Research, a leading rehabilitation center in Houston.

Defining and broadening the IL movement

Towards the end of the 1970s, a number of significant events occurred to both define and broaden the independent living movement. In 1978, the federal government amended the Rehabilitation Act, adding statutory language and funding for the formation of independent living centers

According to IL historian Hale Zukas, national conferences were held in Berkeley in 1975 and in Houston in 1977 to define philosophy and overall approach. After the Rehabilitation Act was amended, five regional conferences were held around the country for disabled people and their allies to define how to establish an IL center and to identify what types of services the centers would provide.

The Executive Directors of the newly federally funded CILs met regularly with the Rehabilitation Services Administration (RSA), the funding agency, to discuss issues related to the development and expansion of CILs nationwide. RSA, a division of the Department of Education, provides funding on a competitive basis for the establishment of Centers for Independent Living.

Interviewed for this paper, Zukas said that because directors of Independent Living Centers believed the views of IL consumers and people with disabilities were not being listened to by the federal government, they worked to organize and establish in 1982 the National Council on Independent Living (NCIL).

National IL organization formed

The National Council on Independent Living (NCIL) is now the oldest cross disability, grassroots organization run by and for people with disabilities in the U.S. Currently, NCIL represents over 700 organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States. Its annual spring conferences are often timed so that the participants can also take part in an advocacy effort, such as education of members of Congress about the need for a national personal assistance program.

International growth of independent living

As the movement grew in the US, its reputation also began to spread throughout the world. At the same time disabled people's groups in other countries were starting their own revolutions. As examples, by the late 1970s, there were strong disabled people's movements organizing in Canada, Finland, England, Germany, the Netherlands, Sweden and Ireland. Some future IL and disability rights leaders from Europe, such as Adolph Ratzka of Sweden and Theresia Degener and Ottmar Miles Paul of Germany, took higher degrees in Berkeley during the 1970s and 80s where they met their U.S. peers. The leaders of these groups and from the U.S. began to exchange information and study visits during the late 1970s and many (an estimated 200) came together for the first time at the Rehabilitation International World Congress in Winnipeg, Canada in 1980. During that conference, what became known as Disabled People's International was founded as the world's first international cross-disability organization.

An example of a dynamic international exchange taking place over two decades is the IL partnership created by the USA and Japan. In 1981, 10 Japanese students with disabilities came to study and intern at U.S. IL centers. Each student lived in the US between six months and a year to learn both the IL philosophy as well as the practical aspects of providing IL services and/or administering a center. This program lasted approximately ten years, funding about 10 students a year and spawned and nurtured the pioneers of the Japanese IL movement. Then, during the 1990s, the Japanese National Council for Independent Living, in collaboration with the Japanese Society for Rehabilitation of Disabled Persons, began to offer training in IL to disabled individuals from poorer countries in Asia. This has helped to introduce IL concepts in countries such as Thailand, Korea, Sri Lanka and Vietnam.

Studies of the rise of the disability rights and independent living movement point to 1981 as a landmark year. For example, the International Independent Living Timeline (www.ilru.org/international) shows a dramatic rise in 1981-82 around the world in the formation of national disability rights groups that were earning recognition from their respective governments. Several studies, including the analysis of the above timeline by disability rights scholar Anne Finger, identify the United Nations International Year of Disabled Persons as providing a strong impetus to the development of these national groups.

In 1983 the World Institute on Disability (WID) was formed by IL leaders Ed Roberts and Judy Heumann to initiate policy development, research and other activity to support the national and international growth of the independent living movement. Several international projects of WID are mentioned in this paper. WID was one of several organizations that grew out of the original Berkeley Center for Independent Living and other examples are: Through the Looking Glass, a group focused on parenting and disability; the KIDS project, raising disability awareness in schools; and DREDF, the Disability Rights, Education and Defense Fund, initiating litigation, training and advocacy on behalf of disabled children and adults.

Other U.S. groups that have worked hard to spread the independent living approach throughout the world include: Whirlwind Wheelchairs International under the direction of Ralf Hotchkiss, Mobility International USA under the direction of Susan Sygall and, more recently, Landmine Survivors Network, under the direction of Jerry White.

Emerging issues in second generation of independent living

In 1984 the first national conference on rural independent living was held, giving rise to a new organization, APRIL (Association of Programs for Rural Independent Living). Historically, IL has been largely urban-based. Given that 25% of the U.S. population lives in rural areas with very limited access to transportation, it is clear that new approaches to service development are necessary. Information about APRIL is available online: www.april-rural.org.

Also in the last 15 years, some of the IL centers in the Western states have begun outreach to the Native American population and in some cases Native Americans are developing their own IL centers. These groups have similar situations: higher rates of poverty, living in isolation far from the reach of services and from connections to the disability rights and independent living networks.

In the late 1980s, the first national center to address IL needs of African-Americans was established at Howard University, a historically black college. This center produced some of the first reports that correlated disability with violence, malnutrition and poverty and also questioned the middle-class values imbedded in the foundations of IL philosophy.

Gerald Baptiste, an African American advocate and Deputy Director of the Berkeley CIL, provided some insights for this paper about why IL services were not as readily used by this population. "We were never asked for our definition of independence-the program and philosophy was presented as a given. Sometimes, when a black person came through the door of a CIL, it was presumed he or she was already involved in civil rights work and would be interested in becoming a disability rights advocate. In fact, often the black disabled client was just searching for services. Additionally, services of the IL community were often provided in a manner foreign to black culture. For example, young, black unmarried Americans did not often move away from their families; and only wealthy families expected to employ people outside of the family to provide personal services."

Differing Racial & Ethnic Expectations & Experiences of IL

In 1998 the World Institute on Disability and Rehabilitation International organized a focus group in Oakland on cultural aspect of IL services in the U.S. Participants represented IL services from the point of view of the Vietnamese, Chinese, Latino, and Black communities in California and the experience of disability caused by violence in St. Louis.

Preliminary to the discussions of how the various participants viewed independence and independent living, was an informal review of the birth of the IL movement. There were differing memories and viewpoints, but most agreed that in the 1970s and 80s, in the U.S., the disability community had a particular view of who the ideal representatives of the "disability voice" were: male, educated, articulate, and Caucasian. Most agreed that this expectation was never publicly discussed, just implemented and of course, mirrored the power structure of the times. This is not to say that that approach was unilaterally applied, it was not. We can all think of exceptions. However, many of the selected representatives of the disability community went on to become IL center directors and some remain in those positions.

Focus group identifies strategies

The focus group was led by Tanis Doe, Ph.D., of Canada, who was also conducting research on disability in ethnic communities on behalf of the California State Independent Living Council. Some of the issues that were discussed in-depth included:

  • Cultural competence is needed to outreach effectively to ethnic communities, not just cultural sensitivity;
  • Authentic representatives of varying ethnic and racial communities must be utilized to adapt, explain and implement the IL philosophy in those communities;
  • The Anglo concepts of ("bootstrap") independence and self-sufficiency are not understood by or necessarily acceptable to the typical family-centered, ethnic community structure and must be expanded to incorporate the values of the various ethnic and racial groups in the U.S;
  • Trust and bridges between the dominant culture and secondary cultures in the U.S. must be built gradually; an evolving partnership is a preferred vision, rather than "training" one to merge with or adapt to the other;
  • The U.S. dominant culture values an individualized (I, me, my, mine) self-expression of needs and preferences, while other cultures are trained to balance considerations and decisions around the benefit of the family as a group;
  • Anglo-culture, in general, encourages direct communication to resolve or air differences of approach or opinion while other cultures require respect, subtlety and indirect verbal and nonverbal expression aimed at harmonious resolution, with additional implications for gender and age differences;
  • Definitions of independence and dependence vary; in most cultures, for example it is not typical for adolescent or adult progeny to leave the family household until they get married;
  • Educational opportunities about IL, such as courses or awareness events, should be promoted to parents and educators in ethnic communities, not just to the disabled individuals, as their support will be critical;
  • Concepts of shame and pride are culture-bound; in many U.S. ethnic communities, to allow/encourage a disabled family member to struggle (financially/socially) by him/herself would bring shame on the family;
  • Some Anglo-evolved concepts such as "disability pride," are so alien to ethnic cultures that it is counterproductive to introduce it; and
  • Finally, it was important to identify role models from a wide variety of cultures and disabilities so that the largest number of children and adolescents could benefit.

These are highlights from a more in-depth discussion, published as an article, "Cultural Components of Independent Living ," published in Portfolio 98, cited below.

Latino Model

In 1999 the World Institute on Disability and Rehabilitation International organized a seminar in San Antonio on the health and employment of Hispanic women with disabilities, with the assistance of the Centers for Disease Control, the Social Security Administration and the Department of Education. This conference brought many issues to light, such as rising correlation of Hispanic heritage to diabetes and hypertension. At the same time Hispanics are more frequently working in dangerous occupations and Hispanic men are 50% more likely to become disabled on the job than other workers. High drop-out rates coupled with low literacy and violence contribute to an increasing rate of disability in the Hispanic population. For many reasons, including language barriers and mistrust of service delivery systems, Latinos with disabilities rarely utilize independent living centers.

In response to identified needs, some CILs have begun offering outreach services to the Hispanic, Asian, Native American, Black and rural communities. In 2001, WID began a new five-year project to develop the first National Technical Assistance Center for Latinos with Disabilities (www.proyectovision.net). At the same time, two other centers have been funded for Asia & Pacific Islanders and for Native Americans with disabilities. In addition some State Independent Living Councils have received funds for "outreach" staff to serve ethnic communities.

Shame and Blame

I do not intend in this paper to undertake an extensive commentary about when a child is born with a disability, it seems important to attribute blame, to establish whose fault it is that the child has this or that condition. Recently, I saw a film, "Refrigerator Mothers," making it clear that the whole field of autism was suffocated in the 1960s-70s by doctors who decided, with no verifiable research basis, to blame mothers for being too cold to connect with their children emotionally. It was believed then that autism was a syndrome found exclusively in Caucasian, mostly male children born into the middle-class. It is interesting to me that this film shows that it has also been equally important (and damaging) in "Anglo-culture" to assign blame for a disability. A critical issue for the future, to be examined honestly by disabled adolescents, adults and their family members is how to avoid or diminish "blame and shame" in living with a disability. Certainly in the Latino community, this is still a major influence. In some cases the "shame and blame" syndrome is powerful enough that it results in the break-up of a family.

As Gerard Baptiste has pointed out, as our focus group on cultural variations of IL identified, and as Proyecto Vision, our National Technical Assistance Center for disabled Latinos has clarified, within this diverse ethnic groups, there are different operational approaches to independence, to incorporating disability identity and to accessing and sharing information.

Philosophy & Definitions

Perhaps most fundamental to IL philosophy today is the idea that each person has the right to independence through maximum control over his or her life, based on an ability and opportunity to make choices in performing everyday activities. These activities include: managing one's personal life; participating in community life; fulfilling social roles, such as marriage, parenthood, employment, and citizenship; sustaining self-determination; and minimizing physical or psychological dependence on others.

There are many definitions of IL philosophy. One of the clearest definitions, in my opinion was developed by Prof. Adolf Ratzka: "Independent Living is a philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect.

"Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our everyday lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and abilities, start families of our own. Just as everybody else, we need to be in charge of our lives, think and speak for ourselves.

"To this end we need to support and learn from each other, organize ourselves and work for political changes that lead to the legal protection of our human and civil rights." (www.independentliving.org).

The independent living "paradigm shift" was first analyzed in-depth by Prof. Gerben DeJong, a Dutch scholar working in the U.S. in the late 1970s (DeJong, 1979). He articulated a system-wide shift from the medical model to the independent living model. This new theory, similar to other minority group theories, located problems or "deficiencies" in the society, not the individual. Many people with disabilities no longer saw themselves as broken or sick, certainly not in need of repair. Issues such as attitudinal and economic barriers were the real problems facing people with disabilities. The answers were to be found in changing and "fixing" society, not people with disabilities. Most important, decisions must be made by the individual, not by the medical or rehabilitation professional.

As Gina McDonald states in her history, "Using these principles, people began to view themselves as powerful and self-directed as opposed to passive victims, objects of charity, cripples, or not-whole. Disability began to be seen as a natural, not uncommon, experience in life, not a tragedy."

There have been many books published in the last decades outlining the social model vs. the medical model but this early paper by deJong served to alert the rehabilitation community that a major change or seismic shift in conceptualization of service delivery was taking place.

Revisiting 1977: Using Civil Disobedience Successfully

So, here is where I began this journey, a blind, young adult, completely naïve, but ready to claim her civil rights.

In 1977 after years of unfulfilled promises by President Nixon and Ford, disability rights advocates began to pressure the Jimmy Carter Administration to sign regulations for the newly adopted Rehabilitation Act. Following is McDonald's description of the civil disobedience tactics used: "Jimmy Carter had appointed Joseph Califano his Secretary of Health, Education and Welfare (HEW). Califano refused to issue regulations and was given an ultimatum and deadline of April 4, 1977. April 4 went by with no regulations and no word from Califano.

On April 5, demonstrations by people with disabilities took place in ten cities across the country. By the end of the day, demonstrations in nine cities were over. In one city, San Francisco, protesters refused to disband.

Demonstrators, more than 150 people with disabilities, had taken over the federal office building and refused to leave. They stayed until May 1. Califano had issued regulations by April 28, but the protesters stayed until they had reviewed the regulations and approved them."

In 1997 a 25 year anniversary celebration of this historic demonstration and its far-reaching implications for the disability movement was held in Berkeley. (A history and film about this demonstration has been produced by and is available from the Disability Rights, Education & Defense Fund: www.dredf.org).

The lesson we all learned from the demonstration is a fairly simple one. As Martin Luther King said, "It is an historical fact that the privileged groups seldom give up their privileges voluntarily. Individuals may see the moral light and voluntarily give up their unjust posture, but, as we are reminded, groups tend to be more immoral than individuals. We know, through painful experience that freedom is never voluntarily given by the oppressor, it must be demanded by the oppressed."

Noting the success of this strategy, a disability rights group was formed to press government and private transportation providers for accessible public transit. Called ADAPT, this group held numerous demonstrations and blocked access to meetings of transit professionals, beginning in 1978 in Denver and continuing throughout the 1980s. In the 1990s, this same group changed its focus to obtaining a national attendant care program to keep people out of nursing homes. Civil disobedience is still one of ADAPT's most successful tactics. Information about ADAPT is available online: www.adapt.org.

In 1988, massive street demonstrations and public protests were organized in Washington, D.C. by the deaf community to assert that the time had come for Gallaudet University, after 100 years, to have a deaf president. The immediate objective was realized and a well-qualified applicant, Prof. I. King Jordan, was appointed. The longer range objective, to establish the civil rights of deaf people and credibility of "deaf culture," was also greatly advanced through intensive media coverage of the week-long protests of thousands of students, faculty and their allies.

Conclusions

The history of independent living, compared to other social movements is a short one, yet already comprises more than 30 years and at least two generations of effort. Our challenges and most complex questions for the future will surely include the following:

  • Even though the U.S. has some of the most far-reaching disability rights legislation, the majority of the disabled population does not identify as being so;
  • In cultures where disability pride is an oxymoron, there is very little utilization of services being offered by IL centers;
  • Given that the fastest growing disabled population is those who are aging, how will the IL movement position itself to ally with advocates for senior citizens?
  • Is it time to rethink the roles of IL centers? One provocative article featured in Ragged Edge Magazine asks "Are IL centers just glorified sheltered workshops?"
  • Although it is well-established that children and adolescents with disabilities would benefit from role-models and mentors, we do not seem to have found the way yet to connect the IL movement with its future leadership.

In 1997, Adolph Ratzka, founder of the international Institute for Independent Living, based in Sweden, wrote:

"Because we have been told we cannot do much for ourselves, we have relied on other people to fight for our cause.

"Because we have been ashamed of our disabilities, we have stayed in the background.

"We are the last minority to fight for our rights and we will not go away. Even with the most sophisticated prevention, early detection and rehabilitation services, there will always be people with disabilities and we have to build our societies in such a way that everybody can live in them with dignity and self-respect. And we have to start now." (www.independentliving.org/toolsforpower/tools7.html).

As we enter our fourth decade of independent living, there are more disabled children attending public schools, more disabled people visible in the workplace, the flowering of disability culture has begun and there is an increased exchange of information among disability groups on the world wide web-all this is beginning to result in a more accepting and accessible society for all America's disabled citizens.

Recommended readings and resources on IL

In addition to above mentioned sources, please check out:

A Little History Worth Knowing, Timothy Cook, www.acils.com/acil/il/histknow.html

Are IL Centers Just Glorified Sheltered Workshops? Nicolas Steenhout in www.raggededgemagazine.com/0903/0903/ft3.html#bio

Cultural Adaptations of the Independent Living Philosophy: some preliminary observations, Kathy Martinez, Portfolio 1996, published by Rehabilitation International and the World Institute on Disability (www.wid.org)

Cultural Components of Independent Living in the USA: a discussion, summarized by Barbara Duncan with the assistance of Tanis Doe, Ph.D., Portfolio 1998, published by Rehabilitation International and World Institute on Disability

Deaf President Now: the 1988 Revolution at Gallaudet University, John Christianson & Sharon Barnatt, Gallaudet University Press: http://gupress.gallaudet.edu/2877.html

The Disability Rights Movement: from Charity to Confrontation, Doris Zames Fleischer & Frida Zames, 2001, Temple University Press, Philadelphia

FDR's Splendid Deception by Hugh Gregory Gallagher, 1985; second edition 1994 & 1999, Vandemere Press, Arlington, VA.

From Charity to Disability Rights: Global Initiatives of Rehabilitation International 1922-2002, by Nora Groce, Ph.D., published 2002 by RI (www.rehab-international.org)

History of Independent Living by Gina McDonald and Mike Oxford, www.acils.com/acil/il/history

Independent Living definitions, philosophy & comprehensive international library on all aspects of IL and disability rights movements, developed under the direction of Adolf Ratzka: www.independentliving.org

Independent Living Outcomes for American Indians with Disabilities: a factsheet www4.nau.edu/ihd/airrtc/factshts/fact6.html

Issues in Rural Independence Revisited, Bonnie O'Day, a publication of IL Net, 2001, available from Independent Living Research Utilization, 2323 S. Shepherd, Suite 1000, Houston, TX 77019 (www.ilru.org) (ILRU has developed a comprehensive library on IL at this site)

Jacobus tenBroek: Speeches, www.nfb.org/tenbroek.htm

Lift Every Voice: modernizing disability policies & programs to serve a diverse nation, 1999, National Council on Disability, 1331 F St., NW, Suite 1050, Washington, D.C. 20004 (www.ncd.gov)

The New Disability History: American Perspectives, edited by Paul Longmore & Lauri Umansky, 2002, New York University Press

No Pity: People with Disabilities Forging a New Civil Rights Movement, Joseph Shapiro, 1993, Times Books, Random House, New York

Normalization: the principle of normalization in human services, 1972, Wolf Wolfensberger, National Institute on Mental Retardation, Toronto, Canada

Personal Assistance Services in Europe & North America: report of an international symposium, edited by Barbara Duncan & Susan Brown, 1993, Rehabilitation International, New York (www.rehab-international.org) and World Institute on Disability, Oakland (www.wid.org)

Refrigerator Mothers (film), Fanlight Productions, www.fanlight.com

The U.S. Role in International Disability Activities: a history and a look towards the future, Nora Groce, 1992, Rehabilitation International, New York

International Independent Living Timeline and a comprehensive library and series of IL publications by ILRU: www.ilru.org/international

Disability History Timeline: www.conyilp.org/RRTC/lm/training/disabilityrightstimeline.doc

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