Independent Living in the U.S. & Canada

Martinez, Kathy.  2003.  Independent Living in the U.S. & Canada.
Kathy Martinez is International Director and Deputy Director of the World Institute on Disability, Oakland, USA. She gives an overview of events in the U.S. and Canada that made the independent living movement possible. She also covers the basic philosophy of the U.S. IL movement, as well as emerging issues and trends that challenge the IL movement. Internet publication URL: www.independentliving.org/docs6/martinez2003.html. In the forthcoming English version of: Alonso, J. Vidal Garcia. 2003. "El Movimiento de Vida Independiente, Experiencias Internacionales." ("The Independent Living Movement: International Experiences.") Internet publication URL: www.independentliving.org/docs6/alonso2003.pdf (In Spanish).

by Kathy Martinez, 2003,
edited by Barbara Duncan

Contents

1. Origins of the Movement (1970-1980)

1.1. Background

1.2. Summary of the Early Years of the IL Movement in the U.S. and Canada
Out of the Public Eye
Windows of Enlightenment

1.3. 20th Century Developments
Education as a Catapult into the Community

1.4. Summary of the Early Years of the IL movement in the U.S.

1.5. Summary of the Early Years of the IL Movement in Canada
De-institutionalization
Independent Living in Canada

1.6. Early Sites of IL Activism in the U.S.
Parallel rise of National Cross-disability Efforts

2. Evolution (1980-1995)

2.1. National IL Organization Formed

2.2. International growth of independent living; relationship to international bodies

3. Contemporary Vision: Emerging Issues in the Second Generation of Independent Living

3.1. 1990 - Present: Highlights
1990: ADA Passed
1997: International Leadership Forum for Women with Disabilities
1999: International Independent Living Summit
2000: DisabilityWorld Founded

3.2. Evolving Philosophy & Definitions

3.3. Summary of Relevant Laws

3.4. Using Civil Disobedience Successfully

4. Conclusions


1. Origins of the Movement (1970-1980)

1.1. Background

As with most major societal changes or phenomena, the United States Independent Living (IL) movement did not happen over night. There were many significant events in the 1960s and the 1970s which led to its inception and continue to mold and shape its constant 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 chapter, I will attempt to provide the reader with an overview of events and leaders that made the birth of the independent living movement possible, together with information about basic philosophical tenets which have structured and guided the U.S. IL movement. I will also offer 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 examine the dilemma presented by ethnic groups who wish to benefit from IL services but are questioning the service models which are based on the values held by the dominant culture.

Also in this chapter the relationship between the U.S. IL movement and the growth of IL in other countries will be explored, especially through joint projects and international conferences and organizations.

1.2. Summary of the Early Years of the IL Movement in the U.S. and Canada

Out of the Public Eye

In the early 20th century, as was the case in most countries, many disabled persons in the U.S. either died due to lack of medical treatment, were sent to asylums or institutions or lived hidden away in the houses of their families. Almost every State had laws, (some staying on the books as late as the early 90’s), which either prohibited or strongly discouraged disabled people from being a part of public life. In the 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, ‘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’ (nondisabled 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.”

Windows of Enlightenment

Even with these laws on the books, the U.S. began to experience a slight shift in attitude toward primarily deaf and blind people. 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. “ (1992, Rehabilitation International, New York)

1.3. 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 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.

During the 1920s, 1930s and 1940s a number of charity organizations were established. The original purpose of these organizations was to obtain a cure for polio, paralysis and cerebral palsy. In addition, these organizations provided financial assistance to disabled people 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.

At this same time, advocacy organizations were springing up including The National Federation of the Blind, 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.

In the 1950s, the U.S. 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 around this time, the first disabled 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 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, the well known law professor and organizer, Jacobus tenBroek, graduated from Berkeley High. 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.

1.4. Summary of the Early Years of the IL movement in the U.S.

Thus, 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; new advocacy groups promoting self-representation; 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 literature.

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; and gay people decided to “come out of the closet” to advocate on their own behalf. Until this moment, the disabled population had been primarily represented in public or before Congress by doctors, academics and charity workers. Unlike ethnic and racial minorities, but similar to the gay community, disabled individuals often are isolated from other disabled children or adults and cannot rely on their families or those around them to develop their identity. 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.

Often in the early years of the disability movement, leading spokespersons were blind such as Helen Keller, followed by 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.

1.5. Summary of the Early Years of the IL Movement in Canada

Since the author is not an expert on Canadian IL developments, a few highlights are quoted below from the literature.

De-institutionalization

One of the first modern social movements in the disability and rehabilitation field to have a wide international impact was de-institutionalization, an attempt to move people, primarily those with developmental disabilities, out of institutions and back into their home communities. This movement, introduced in Sweden in 1969-70 and in Canada shortly after was led by service providers and parents of people with developmental disabilities and was based on the principle of "normalization" developed by Bengt Nirje of Sweden and Wolf Wolfensberger, a German sociologist working for the Canadian National Institute on Mental Retardation in Toronto, Canada.

His theory was that people with developmental disabilities should live in the most "normal" setting possible if they were expected to behave "normally." (The Principle of Normalization in Human Services,” Wolfensberger, 1972,) Dr. G. Allan Roeher, Ph.D., then director of the Canadian National Institute on Mental Retardation, was considered an innovator and brought international consultants to Canada to help develop more humane social services. This was a significant contribution from Canada. It appears to have been the first international movement focused on supporting the group considered the most severely disabled. It was radical for the times, suggesting that people with cognitive disabilities could be better served outside institutions. In many ways, this was the first movement that acknowledged their humanity and served as a precursor to the renowned international organization, People First, which was also founded in Canada.

Independent Living in Canada

According to a paper by Victor R. Willi on “Independent Living in Canada,” (www.cilt.ca/About): The IL movement, with its philosophy, principles and attitude was introduced into Canada by Gerben deJong at the COPOH (Coalition of Provincial Organizations of the Handicapped) national conference on ‘Parameters of Rehabilitation’ in Vancouver in 1980.

Willi states that: “IL evolved as a social movement or struggle for civil liberties by persons with a disability using self-help tactics. The idea of one disabled person helping another was revolutionary since it is not unusual, even today, for persons with a disability to avoid each other. Independent Living s really about interdependence, not living in isolation.”

Willi concludes that: “there are 25 thriving Independent Living Resource Centers across Canada, from Newfoundland-Labrador to Vancouver Island. In addition, there are number of new centers with pending membership applications with the Canadian Association of Independent Living Centers.

In 1985 the Canadian Association of Independent Living Centers was formed and information is available online: www.cailc.ca

1.6. Early Sites of IL Activism in the U.S.

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.

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. After a few such meetings, a group met in 1975 to put together 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., 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 Lex Frieden, Secretary, 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.

2. Evolution (1980-1995)

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, two 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).

2.1. National IL Organization Formed

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.

2.2. International Growth of Independent Living; Relationship to International Bodies

As the movement grew in the U.S., 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. The leaders of these groups and from the U.S. began to exchange information and visits during the late 1970s and many 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.

In 1981, 10 Japanese students with disabilities came to study and intern at U.S. IL centers. Each student lived in the U.S. 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 described 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.

3. Contemporary Vision: Emerging Issues in the 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.”

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, some CILs have begun offering outreach services to the Hispanic, Asian, Native American and Black 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.

3.1. 1990 - Present: Highlights

1990: ADA Passed

The Americans with Disabilities Act was progressive on many fronts. However, the essential difference between this and previous legislation is that it extended coverage and responsibility for change to the private sector. Previous civil rights legislation only pertained to entities receiving federal funds. Now, timetables were put into effect, gradually increasing levels of compliance with demands for accessibility of the workplace, the environment and communications.

As Paul Longmore, disability historian, often comments, “The ADA is the capstone to our civil rights legislation, because it offers us access to every aspect of life in the community.”

1995: Over 200 women with disabilities participate in UN Fourth World Conference on Women, held in China

Women with disabilities from around 50 countries participated in the landmark UN 4th World Conference on Women in Beijing. This meeting was important because it was the first time a significant number of disabled women from a variety of cultures and countries came together and were able to exchange information about their specific needs and issues. There was a large U.S. delegation of women from throughout the country who also had never before come together around a gender agenda. Among the results was a study, sponsored by WID and Mobility International USA, identifying disabled women’s needs for training and leadership development. This study led directly to the:

1997: International Leadership Forum for Women with Disabilities

Held in Washington, D.C., in June 1997, the Forum brought together more than 600 women from more than 80 countries and territories. With the sponsorship of 25 U.S. federal agencies, this event served to formalize the urgency for all disability and rehabilitation services, including IL, to recognize and respond to the needs of women and girls. Traditionally, disabled girls and women have less access to education and training and consequently are in lower and less visible positions in the world of work and the organized disability movements. The full report of the Forum can be read on Rehabilitation International’s website: www.rehab-international.org.

1999: International Independent Living Summit

Held in Washington, D.C., in September 1999, the Summit was organized by the Independent Living Research Utilization program of the Institute for Rehabilitation and Research, with support from the Department of Education. The IL leadership from 50 countries from all regions participated in the comparison and contrast of service provision, principles and philosophy. It was not only the first in-depth international conference dedicated to IL in decades, it was also the first major exposure of U.S. IL directors to their international peers. Chaired by international IL advocate Lex Frieden, this conference has resulted in increased collaboration between IL centers in the U.S. and abroad. The report of the conference is online: www.ilru.org/international/summit.

2000: DisabilityWorld Founded

In 2000 an electronic magazine, “DisabilityWorld,” was founded to provide a forum for reporting and analyzing progress in the international disability rights and independent living movement. This magazine, found only on the web (www.disabilityworld.org) is published in both English and Spanish. Reporters based all over the world, most having first person experience with disability, provide articles on progress in independent living, governance, legislation, employment, accessibility, technology, children’s and women’s issues, and mass media and arts. In November 2002, this popular website received 40,000 visits. DisabilityWorld is a collaborative project, produced by WID, RI, ILRU and the Inter-American Institute on Disability, with funding from the U.S. National Institute on Disability and Rehabilitation Research.

3.2. Evolving 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 was first described and developed 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 social and attitudinal 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 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.

3.3. Summary of Relevant Laws

The following description of relevant Civil Rights Laws is taken from Gina McDonald’s history of IL: www.acils.com/acil/ilhistor.html

“A chronological listing and brief description of important federal civil rights laws affecting
people with disabilities is in order.		 1964
Civil Rights Act: prohibits discrimination on the basis of race, religion, ethnicity, national origin, and creed -- later, gender was added as a protected class. 1968
Architectural Barriers Act: prohibits architectural barriers in all federally owned or leased buildings. 1970
Urban Mass Transit Act: requires that all new mass transit vehicles be equipped with wheelchair lifts. As mentioned earlier, it was twenty years, primarily because of machinations of the American Public Transit Association (APTA), before the part of the law requiring wheelchair lifts was implemented. 1973
Rehabilitation Act: particularly Title V, Sections 501, 503, and 504, prohibits discrimination in federal programs and services and all other programs or services receiving federal funding. 1975
Developmental Disabilities Bill of Rights Act: among other things, establishes Protection and Advocacy services (P & A). 1975
Education of All Handicapped Children Act (PL 94-142): requires free, appropriate public education in the least restrictive environment possible for children with disabilities. This law is now called the Individuals with Disabilities Education Act (IDEA). 1978
Amendments to the Rehabilitation Act: provides for consumer-controlled centers for
independent living.		 1983
Amendments to the Rehabilitation Act: provides for the Client Assistance Program (CAP), an advocacy program for consumers of rehabilitation and independent living services. 1985
Mental Illness Bill of Rights Act: requires protection and advocacy services (P & A) for people with mental illness. 1988
Civil Rights Restoration Act: counteracts bad case law by clarifying Congress' original intention that under the Rehabilitation Act, discrimination in any program or service that is a part of an entity receiving federal funding -- not just the part which actually and directly receives the funding – is illegal. 1988
Air Carrier Access Act: prohibits discrimination on the basis of disability in air travel and provides for equal access to air transportation services. 1988
Fair Housing Amendments Act: prohibits discrimination in housing against people with disabilities and families with children. Also provides for architectural accessibility of certain new housing units, renovation of existing units, and accessibility modifications at the renter's expense. 1990
Americans with Disabilities Act: provides comprehensive civil rights protection for people with disabilities; closely modeled after the Civil Rights Act and the Section 504 of Title V of the Rehabilitation Act and its regulations.”  

 

3.4. Using Civil Disobedience Successfully

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.

4. 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?

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, Adolf Ratzka, founder of the international Independent Living Institute, 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.


Parts available in English from the forthcoming English version of: Alonso, J. Vidal Garcia. 2003. "El Movimiento de Vida Independiente, Experiencias Internacionales."("The Independent Living Movement: International Experiences.") Internet publication URL: www.independentliving.org/docs6/alonso2003.pdf (In Spanish, PDFPDF, 1.46 MB).