IL History and Philosophy: Orientation for IL Staff

A Production of the IL NETIndependent Living Research Utilization at TIRR and UtahStateUniversityCenter for Persons with Disabilities

This DVD was developed in collaboration with UtahStateUniversityCenter for Persons with Disabilities and funded by the Rehabilitation Services Administration, U.S. Department of Education, Agreement No. H132A020004. No official endorsement of the Department of Education should be inferred.

Copyright February 2006

DVD Contents:
Module One: A Brief History of Disability (16.54)
Module Two: Emergence of Independent Living (21:00)
Module Three: Codification of Independent Living - It is the law! (13:50)
Module Four: Disability Policy Framework and Advocacy (19:54)

Produced by Independent Living Research Utilization of the Institute for Rehabilitation and Research
Richard Petty, Executive Director
Darrell Jones, Associate Executive Director.

Developed by the Center for Persons with Disabilities
UtahStateUniversity
Judith Holt, Producer
Marilyn Hammond, Director

Writers
Cathy Chambless
Donna Gleaves
Helen Roth.

Additional Production Staff
Jeanie Peck

Narrator
Wendi Hassan

Music
Diane Coleman

Photographs, video and drawings courtesy of
ILRU
Center for Persons with Disabilities
Chicago Historical Society
Dread1myn productions
Gallaudet University
Library of Congress Prints and Photographs Division
Options for Independence
Not Dead Yet
Realistic Reflections
RESNA
and
Yoshiko Dart

Editing, captioning and DVD production
K-SAR Video and DVD Productions.

The IL NET is a collaborative project of Independent Living Research Utilization (ILRU) and the National Council of Independent Living (NCIL), with funding from the Rehabilitation Services Administration. The IL NET provides training, technical assistance and publications supporting the work of centers for independent living and statewide independent living councils.

MODULE 2: EMERGENCE OF INDEPENDENT LIVING

  • Screen Text:This DVD was produced by ILRU in cooperation with the Center for Persons with Disabilities, UtahStateUniversity.
  • Screen Text:Module 2, Emergence of Independent Living.
  • Photograph:An old picture from the early 1900’s of four high school aged students with disabilities, two in wheelchairs, with their teacher.
  • Photograph: A group of college students from the 1960’s talking together, three are in wheelchairs.
  • Photograph: A rally with a woman in a wheelchair talking on stage and a banner behind her that states, Injustice anywhere to justice everywhere.
  • Photograph: A large group of people with and without disabilities marching down a street.
  • Photograph: Justin Dart with his head down and his hand to his face, Orrin Hatch wiping his eyes, with Yoshiko Dart and other disability leaders clapping.

Audio: What is Independent Living? This module will discuss the ways in which Independent Living philosophy and concepts differ from the medical model and traditional rehabilitation. This module will also provide familiarity with some of the disability leaders and events that launched, developed, and now sustain the Independent Living Movement.

  • On screen text: What Is Independent Living?
  • On screen text: The following collage of names appear one after the other: Ed Roberts, Judy Heumann, Fred Fay, Lex Frieden, Justin Dart, Yoshiko Dart, Marca Bristo, Wade Blank, Max Starkloff, Andy Imparato, Mary Lou Breslin, Evan Kemp, Mary Johnson, Cindy Jones, Lucy Gwin; organizations: NCIL, ADAPT, DREDF, JFA, AAPD, ILRU; publications: Disability Rag, Mainstream, Mouth; and events: 504 sit in, capitol crawl, White House candlelight vigil.
  • On screen text: The words, Historical context.

Audio: As we learned in Module 1, disability was thought of almost exclusively as a medical, rehabilitation, and charity issue, from the 19th Century until about 1960.

  • Photograph from the 1940’s of a nurse wheeling a male patient in a wheelchair through a hallway with rows of hospital beds on both sides. Two nurses in white uniforms talk to children in hospital beds.

Audio: The focus was on searching for medical cures to alleviate disabling conditions.

  • Photograph: 1950’s doctor examines the leg of a male patient. In the background there is a built-in glass cabinet filled with medical supplies.

Audio: The goal was to either “fix” people with disabilities or to segregate those who couldn’t be “fixed” in institutions.

  • Photograph: The IndianaSchool for the Deaf, a large five story building with 40 teachers in long dresses posed on the front lawn.

Photograph: A large multistory brick institution.

Audio: Let’s take a look at how Independent Living philosophy significantly differs from this traditional medical model/rehabilitation paradigm. The medical or rehabilitation paradigm defines disability as a defect in the individual. This way of looking at a disability centers on a medical professional who intervenes in the person’s life. This inevitably leads to a social role for the person with a disability as a powerless patient who is dependent on the experts for direction and decisions. Most people in this situation either never gain control or lose any control they did have. Expectations by professionals are generally low in terms of the person with a disability holding a job or living a constructive life.

  • A detailed chart: White lettering over a dark blue background. The title is, A Comparison of Medical/Rehabilitation and Independent Living Paradigms. The first column is Item, the second column is Medical/Rehab, and the third column is Independent Living. Under Item is locus, under Medical is individual, and under IL is environment. The second row across reads social under Item; patient, client under Medical; and person, consumer under IL. The third row is control, professional, consumer. The fourth row is solution, professional intervention, and peer support, control barrier removal, and advocacy. The last row reads outcomes, maximize activities of daily living, and independence, control, and inclusion.

Audio: The Independent Living or IL paradigm and philosophy are very different from this medical model and call for a different way of perceiving and relating to people with disabilities.

  • Photograph: An older man in a wheelchair rolls on to his ramp inside an adapted van. A doctor with a stethoscope examines a young woman with Down Syndrome.

The problem has been that people with disabilities are often dependent on others to make decisions about their lives.

  • Photograph: A smiling young adult male with developmental disabilities cooks in a small kitchen.

Audio: In addition, widespread discrimination toward people with disabilities is a significant issue.

  • Photograph: Cute young girl in a wheelchair with an attached communication board wearing blue sunglasses poses with her young adult teacher. A young man and woman with developmental disabilities hug each other.

Audio: In the IL paradigm, disability is considered a natural part of the human experience.

  • Photograph: A young man with a long ponytail dressed in jeans transfers from a three wheeled bike to his wheelchair.

Audio: Independent Living means controlling what is done in your life and making your own decisions.

  • Photograph: A man in a wheelchair participates in a protest with a number of people scattered around him carrying a large banner. A woman in a wheelchair kisses a man kneeling beside her on the cheek.

Audio: The problem lies in the environmental, social, and economic barriers that people face.

  • Photograph: A man maneuvers his wheelchair to get over a sidewalk curb. A sign outside a building states, Disabled Access in Rear.

Audio: The solutions are civil rights protections, removal of barriers, and strong advocacy efforts to make change happen.

  • Photograph: A woman in a wheelchair presses an automatic door opener. Justin Dart and Marca Bristo talk underneath a large banner with Judy Heumann and others holding signs.

Audio: The desired outcome is a person who controls his or her own life, has opportunities comparable to other citizens, participates in the community as they wish, and who has economic security.

  • Photograph: An older woman in a scooter on the sidewalk outside the Legislative Office building. A young woman with dark hair and big earrings uses a TTY next to a computer in an office setting.

Audio: There are two different aspects of Independent Living.

  • Photograph: Smiling young adult man with Down Syndrome brushes his teeth in a bathroom.

Audio: Centers for Independent Living comprise the operational or programmatic aspect of Independent Living.

  • Photograph: A woman in a wheelchair talks on the phone while she types on the computer.

Audio: These centers are private, nonprofit, community-based organizations that are consumer controlled and work with people with all types of disabilities of all ages.

  • Photograph: Two women in wheelchairs and a man talk as they sit around a table in a kitchen display area. Older man with a hearing aid behind his ear sits next to a man who is blind in a room with other people.

Audio: By federal law, at least 51% of their staff and governing boards must be people with significant disabilities.

  • Photograph: Staff with disabilities representing a center for independent living hold a South Carolina sign. An older woman in a scooter is surrounded by other people with and without disabilities on a sidewalk.

Audio: The Independent Living or Disability Rights Movement is the other aspect of Independent Living.

  • Photograph: Justin Dart and two women in a chair participate in a march with four other people, one wearing a Free our People t shirt.

Audio: Various organizations, groups, and individuals have participated in this movement over the years, with the purpose of securing civil rights, legal protections, and policies for people with disabilities.

  • Photograph: Many individuals with disabilities crawl up the Capitol steps while cameramen shoot footage. Justin and a woman in a chair talk to a reporter while Yoshiko looks on. Many people with and without disabilities gather in the middle of the street bordered by restaurants and other buildings.

Audio: How, why, and where did this revolutionary change in self- and public perception of people with disabilities come about?

  • Text on the screen states: History and Early Leaders of Independent Living. A young woman using crutches assesses herself in a mirror with a medical professional looking over her shoulder.

Audio: Who were the leaders involved in initiating this paradigm?

  • Photograph: Justin Dart, Judy Heumann, and many other people with disabilities and advocates march underneath a large banner).

Audio: We will now address the answers to these questions with the emergence of Independent Living in the 1960's.

Note: The photographs in the following section are all from the 1960’s.

  • Photograph: Man in a wheelchair with other advocates hold an American flag with a wheelchair symbol in front of the U.S. Capitol steps.

Audio: The seeds for Independent Living were originally planted by war veterans who came home with disabilities.

  • Photograph: A couple of dozen veterans in wheelchairs wearing suits hold signs that read, Keep Faith in Disabled Vets, in a long line next to a building.

Audio: In addition, many more people survived accidents, disease, and birth impairments.

  • Photograph: A college aged man and woman in wheelchairs talk to another man with a beard in front of a large tie-dye hanging cloth.

Audio: Life expectancy also increased, often resulting in age-related disabilities.

  • Photograph: An older man wearing a white shirt and black pants works at a large machine.

Audio: During this time period, other movements such as the civil rights, self-help, and "normalization" movements were quietly building.

  • Photograph: Large crowd of mostly men in suits congregate on a plaza with a huge bullhorn in the center. Men and women protest outside a courthouse holding flags and signs.

Audio: Parents were starting to organize so their children with disabilities could receive a better education and acceptance.

  • Photograph: Youngcollege aged men and women walk across campus holding books. A boy with a tray of food drinks from a glass in a hospital bed by a window.

Audio: The time was right for social change.

  • Photograph: A college aged male talks to several reporters in front of a large column with an American flag.

Audio: During the 1960's and 1970's, a solid philosophical and organizational base was laid for Independent Living.

  • Photograph: A group of people with and without disabilities hold a huge American flag with the disability symbol in the corner. A wheelchair is mounted on a flagpole with a cameramen shooting footage.

Audio: Lex Frieden and other disability leaders came together at ILRU in 1978 to develop a definition of independent living, a definition still in use today.

  • Photograph: Early shot of Lex Frieden with his colleagues.

Audio: The movement and organized efforts to protect civil rights have further developed in the following decades.

  • Photograph: Man speaking at a podium to a crowd of people with some in wheelchairs, including Justin Dart.

Audio: New disability rights organizations and initiatives were launched with more collaboration and coalition building between national organizations.

  • Photograph: Crowd of children and adults with disabilities, including Justin Dart, family, friends, and advocates march with a large sign that says, We shall overcome, and a large American flag.

Audio: Many new leaders emerged.

  • Photograph: Justin Dart speaks to President Clinton with Senator Harkin watching.

Audio: Ed Roberts is known as the Father of Independent Living.

  • Photograph: Ed Roberts in his wheelchair speaks outdoors into a microphone with a long term care flag behind him.

Audio: He had polio at age 16, resulting in quadriplegia and the use of a wheelchair, ventilator, and iron lung.

  • Photograph: Old newspaper article and photo of Ed with a small boy behind him holding on to his chair.

Audio: He struggled to be admitted to the University of California at Berkeley.

  • Photograph: Large student protest at Berkeley under a large ornamental iron overhead gate.

Audio: First, he was denied financial help by the state Vocational Rehabilitation agency because they thought he was "not feasible for employment." Roberts successfully fought this decision but then Berkeley officials said that they had "admitted cripples before and it didn't work out." This is not surprising since accessibility was almost nonexistent.

  • White text is shown on a black screen as follows: Ed Robert’s struggle at University of California. Denied financial assistance – “Not feasible for employment”. Denied university admission, “cripples” didn’t work out. Admitted, but accessibility almost nonexistent.

Audio: With persistence, he was finally admitted in 1962, and lived in the student infirmary.

  • Photograph: Ed Roberts on campus talks to several television reporters with a large camera and microphone.

Audio: As Roberts learned about what he needed to function successfully at Berkeley, he pressured University officials to make needed changes such as wheelchair repair, ramps, transportation, and accessible housing.

  • Photograph: A man works on the spokes of a manual wheelchair. A man in his wheelchair is lowered on the lift of a large van while three people in wheelchairs wait. Before long, other people with significant disabilities joined him.
  • Photograph: College aged man with a beard and woman talk in front of a desk by a window.

Audio: They became known as the "Rolling Quads" and provided other students with assistance concerning disability-related issues.

  • Old blurry video footage: Seven “rolling quads” on the Berkeley campus.

Audio: Roberts and a colleague wrote a successful proposal in 1970 resulting in the Physically Disabled Student Program with John Hessler as the Director.

  • Photograph: Ed Roberts posing with Jerry Brown, two other men in suits, and a woman in a wheelchair.

The new program was overwhelmed with requests for assistance by people with disabilities within the community, so Roberts started a Center for Independent Living in 1972 with a $1 million grant.

  • Photograph: Three students from the 1970’s talk on a sidewalk, one in a wheelchair.

Audio: The BerkeleyCenter was a community-based, private, nonprofit, nonresidential program run by people with disabilities for people with all types of disabilities.

  • Footage of the BerkeleyCenter showing the Center for Independent Living sign, bulletin board, and people working.
  • Photograph: A man with a bushy beard in a wheelchair working in a lab.

Audio: When Roberts was asked what the three most important services were, he answered, "Advocacy, advocacy, and advocacy."

  • Photograph: Ed Roberts, Judy Heumann, and Joan Leone smiling in an office.
  • Text on the screen: Advocacy, advocacy, and advocacy.

Audio: In the early '70s, other programs were developed across the nation based on similar principles.

  • Photograph: Lex Frieden in a studio with two other women in wheelchairs.

Audio: The BostonCenter for Independent Living was organized under the leadership of Fred Fay.

  • Photograph: Fred Fay smiling as he lies prone in his bed.

Audio: Lex Frieden, another prominent leader in Houston, founded the Independent Living Research Utilization program in 1977.

  • Photograph: Lex Frieden being interviewed by a reporter with a big microphone in front of a rock wall.

Audio: In Denver, Wade Blank founded the Atlantis Community, which includes people who once lived in nursing homes.

  • Photograph: Wade Blank with long blond hair and sunglasses wearing a t-shirt in front of an American flag.
  • Photograph: Woman in a wheelchair eats at a table in a nursing home.

Audio: Blank was also the founder of the American Disabled for Accessible Public Transportation, now known as American Disabled for Attendant Programs Today or ADAPT.

  • Photograph: Woman stands in front of a large ADAPT and Free Our People banner.
  • Photograph: Young man with one arm raised wearing an ADAPT orange vest surrounded by other protestors with disabilities and camera men in front of the U.S. Capitol.

Audio: This organization carried out its first civil disobedience action in 1978, when it immobilized buses to gain attention for the need for wheelchair public bus lifts in Denver.

  • Photograph: Protestors with and without disabilities hold large signs that read, Freedom Now and No More Broken Promises.
  • Photograph: Woman in a wheelchair boards an accessible bus.

Audio: Roberts became Director of the BerkeleyCenter for Independent Living in 1974.