HISTORY OF THE DISABILITIES MOVEMENT WITH PHILOSOPHY

HISTORY OF THE DISABILITIES MOVEMENT WITH PHILOSOPHY Leadership Training for Disability Advocates Kearney, Nebraska August 5, 2006 Presented By Eric A. Evans Nebraska Advocacy Services, Inc.

WHY SHOULD WE KNOW THE HISTORY??? THOSE WHO FAIL TO LEARN FROM HISTORY ARE CONDEMNED TO REPEAT IT. GEORGE SANTYANA

THE ROOTS OF EXCLUSIONfrom Charles Galloway • Unless we confront the history of public policy that created and maintained the exclusion of large number of people with disabilities, we are even more likely to perpetuate the unexamined assumptions and expectations on which those exclusionary policies were constructed. • Our collective understanding of mental retardation (developmental disabilities) today is a strange soup of modern scientific information, folklore, and fear of the unfamiliar.

1850-1880RESIDENTIAL SCHOOLING • Designed for a short-term stay • Designed to be small (success = small numbers) • Focus of the stay is to adapt to life in the community • Optimistic attitude - rehabilitation

1870 – 1890SHELTER FROM SOCIETY-AT-LARGE • Rapid growth in number of people served, system log jammed • Negative attitudes became acceptable - no expectation of rehabilitation • Stay lengthened • Failure became acceptable

1870 – 1890 • Object of pity: “a well-fed, well-cared for idiot is a happy creature. An idiot awakened to his condition is a miserable one.” • The economy of scale: the more people congregated in a single institution, the cheaper the per capita costs.

1870 – 1890 • A new philosophy begins to emerge: “The question of unimprovability then being established, the only practicable thing to do is to furnish a home where, amid cheerful surroundings, in accordance with the state of our Christian civilization, and in an age of practical economy, the mediocre imbecile may lead a happy, harmless, and measurably useful life in assisting to care for his fellows.”

1880 – 1925 PERIOD OF INDICTMENT • The IQ was first used to label people • Eugenics emerged: “As a fact, these girls---unless cared for permanently in an institution--usually become immoral or are led away into bad marriages. In either case, their children are apt to be mentally defective, with more or less pronounced animal instincts diseased and depraved, a curse and menace to the community.

1880 – 1925 • Controlling the menace: “The adult male becomes the town loafers and incapables, the irresponsible pests of the neighbor-hood, petty thieves, purposeless destroyers of property, incendiaries, and very frequently violators of men and little girls.” • Until 1963, persons committed to Nebraska’s state institution could be released only if they were made sterile or were otherwise incapable of reproduction.

1925 – 1950DRIFT ON COURSE • Fallacies of the eugenic scare become increasingly apparent. • Large institutions continued to exist even though many questioned their reason for existence.

1925 – 1950 • Institutions continue because: • nearby towns are dependent on the payroll and jobs (Economics) • absence of a powerful group with a contradicting philosophy (Advocacy)

HISTORICAL TIMELINE OF SELECTED EVENTS IN NEBRASKA • 1858: Nebraska’s first service provision: people afflicted with “idiocy, lunacy, or other unavoidable causes” were to be supported by their families or relatives, otherwise the law required county support. • 1867: Nebraska Statehood • 1885: Establishment of the Nebraska Institution for Feebleminded Youth at Beatrice

SELECTED HISTORICAL TIMELINE • 1900: Evidence of custodial philosophy, i.e., residents at NIFMY were educated to function productively within the institutional setting where they would most likely remain for life. • 1914: Evidence of new motive for custodial care, i.e., society perceives people with mental retardation as threats and the condition as hereditarily transmitted.

SELECTED HISTORICAL TIMELINE • 1915: Nebraska legislature enacts first civil commitment law to prevent reproduction by people with mental retardation, as well as first sterilization law requiring a determination of the need for sterilization before discharge. • 1929: Legislature enacts law eliminating the consent requirement for sterilization.

SELECTED HISTORICAL TIMELINE • 1935: Graves of deceased Nebraska Institute for the Feebleminded were identified only by number reflecting the disassociation of the person from their family due to the “genetic” scare. • 1949: Legislature provides for community educational services for children with mental retardation.

SELECTED HISTORICAL TIMELINE • 1951: GOARC, the Greater Omaha Association for Retarded Children established. • 1954: NEBARC, the Nebraska Association for Retarded Children established. • 1965: Interagency Committee on Mental Retardation and Citizen’s Committee on Mental Retardation formed. • 1967: Citizens’ Study Committee on Mental Retardation established.

SELECTED HISTORICAL TIMELINE • 1968:OUT OF THE DARKNESS documentary airs on Channel 7 television station and INTO THE LIGHT report issued. • 1969: Legislature passes 14 laws providing for the creation, funding and coordination of community based services. LB 885 establishes six community based mental retardation regions. • 1970: First comprehensive regional community services agency for people with mental retardation (ENCOR) formed by four county governments.

SELECTED HISTORICAL TIMELINE • 1970: First Citizen Advocacy Program started in Lincoln, NE by the Capitol City ARC. • 1971: Pilot Parents formed by GOARC parents. • 1972: Horacek v. Exon lawsuit. • 1973: Legislature passes law requiring appropriate educational programs for all handicapped children aged 5 to 18. • 1975: Nebraska’s People First movement begins.

SELECTED HISTORICAL TIMELINE • 1975: Horacek v. Exon consent decree approved. • 1984: U.S. District Court dismisses Horacek v. Exon. • 1991: Legislature passes Developmental Disabilities Services Act. • 1995: BLUEPRINT FOR ACTION addresses waitng list for DD services.

STEPS TOWARDS BRUTALIZATION • The first step isstereotypingwhich: • Is based on a recognition that they are different from us. • That results in an oversimplified opinion, effective attitude, or uncritical judgment.

STEPS • Step two is theattribution of deviance: When someone or some group is perceived as different and that those differences are devalued by others.

STEPS • The third step, de-humanization,occurs when their differences from us are so extreme as to preclude their membership in that largest group of uscalled humanity.

STEPS • The fourth step is brutalization: Since theycannot be considered humans, weare not obligated to treat them with the same rules of civilized conduct we expect of other humans.

SOME COMMON PERCEPTIONS OF PEOPLE WITH DEVELOPMENTAL DISABILITIES • The person as sick • The person as a perpetual child • The person as a holy innocent (incapable of doing bad things) • The person as an object of pity/charity • The person as an object of dread • The person as a sub-human • The person as a menace

SOME EXAMPLES OF HOW PEOPLE WITH DEVELOPMENTAL DISABILITIES ARE VIEWED TODAY • Adult Day Care( Life Enrichment Activities Program or LEAP) = eternal child, holy innocent, subhuman • Institutions (ICFs-MR) = menace, object of dread, sickly • Jerry Lewis’s Telethon = object of pity or charity

SOME EXAMPLES • Special Olympics = eternal child, someone to be pitied • Referents, e.g., consumer, mentally challenged, BD, MR, MI, retard = subhuman, less than human • Movies and Media = sub-human, object of dread, menace, eternal child, object of pity or charity

IMAGERY AND OPPRESSION • Imagery puts a face on oppression for people with disabilities. • When you are privileged, it is harder to really see how the other half lives. One can be unaware and, furthermore, not really care. • It is important to understand that imagery is just the surface of oppression.

Acceptance: From the moment of birth, unconditionally welcomed with the love of parents, family, friends, and the community. Rejection: Born broken and labeled young only to be moved into separate and special places. Often services encourage the breakdown of family and community connections. OPPRESSION: WHAT DOES IT LOOK LIKE?

Hope and privilege: education, employment, living wage, increased earnings potential the longer the person works. Despair and poverty: second rate education (if it’s an education at all), chronic unemployment, government benefits, life-long poverty, life-long vocational training. OPPRESSION

Control: choices - marriage & children or single life; career, spiritual life; hobbies, interests; friends, family and social life Powerlessness: no choices, destined to live with 4 or 5 other non-related people the rest of your life OPPRESSION

The sky’s the limit: potential, promise, dreams, and optimism Surrounded by people that love you: surrounded by the love and caring of family and friends There is no limit to how low this can go. Surrounded by three shifts of staff a day with a 70% annual turnover rate: no control over you comes and who goes, surrounded by the caring concern of people paid to be a part of your life OPPRESSION

Safety: we all live in a more dangerous world but....for the most part, we do have some control over our own safety. Abuse and neglect: 70 - 80% of all women living in group homes will be physically or sexually abused at some point and time. OPPRESSION

Positively valued roles in life: parent, spouse, employee, employer, member, neighbor, consumer, home owner, teacher, student, traveler, etc. Negatively valued roles: client, consumer, individuals, those, them, receives government benefits/services etc. OPPRESSION

Humanity is never questioned: at least not until we become one of “them” Humanity is always in question: from the moment of one’s birth until one’s natural or unnatural death, words like “quality of life” begin to creep into discussions about whether people should or should not receive basic treatment or health care OPPRESSION

Fairness and equal treatment: if things aren’t fair or right, we work hard to make them equal Separate and unequal: quit your complaining, things are a lot better than they used to be OPPRESSION

POWER • Power is based upon perception -- if you think you've got it then you've got it. If you think you don't have it, even if you've got it, then you don't have it. Herb Cohen

THE PUBLIC AND ITS PROBLEMS WHEN THE PARTIES INVOLVED IN ANY TRANSACTION ARE UNEQUAL IN STATUS, THE RELATIONSHIP IS LIKELY TO BE ONE-SIDED, AND THE INTERESTS OF ONE PARTY TO SUFFER. IF THE CONSEQUENCES APPEAR SERIOUS, ESPECIALLY IF THEY SEEM TO BE IRRETRIEVABLE, THE PUBLIC BRINGS TO BEAR A WEIGHT THAT WILL EQUALIZE CONDITIONS. John Dewey, 1927

EMPOWERMENT Mobilization is the active expression of our faith in the dignity and worth of the individual. To deny effective participation, including the opportunity to choose, to be heard, to discuss, to criticize, to protest, and to challenge decisions regarding the most fundamental conditions of existence is to deny the individual’s own worth and to confirm his impotence and subservience. Alfred Kahn, Principles of Social Planning,1971

TOWARDS A SOCIAL POLICY OF EMPOWERMENT WE ARE WITNESSING THE RISE OF THE IDEA OF RIGHTS OVER NEEDS. THE PARADOX FOR THE REMAINING YEARS OF THIS CENTURY WILL BE ENCAPSULATED IN A STRUGGLE BETWEEN OPPOSING VIEWS OF THE POOR, THE PHYSICALLY DISABLED, THE MENTAL PATIENT, THE RETARDED PERSON, THE JUVENILE, THE ELDERLY AND SO ON, AS DEPENDENT PERSONS TO BE HELPED OR AS CITIZENS TO BE ASSURED OF RIGHTS AND CHOICES. Rappaport, 1981

A SOCIAL POLICY OF EMPOWERMENT SYMBOLS AND IMAGERY WILL BE VERY IMPORTANT IN THIS STRUGGLE. IT MAKES A GREAT DEAL OF DIFFERENCE IF YOU ARE VIEWED AS A CHILD OR AS A CITIZEN SINCE IF YOU BELIEVE IT YOU ARE QUITE LIKELY TO ACT THE PART (SNYDER & SWANN, 1978; SWANN AND SNYDER, 1980), AND IF THOSE IN POWER BELIEVE IT THEY ARE LIKELY TO DEVELOP PROGRAMS, PLANS AND STRUCTURES THAT WILL HELP YOU BELIEVE IT. Rappaport, 1981

A SOCIAL POLICY OF EMPOWERMENT THE CONCEPT SUGGESTS BOTH INDIVIDUAL DETERMINATION OVER ONE’S OWN LIFE, AND DEMOCRATIC PARTICIPATION IN THE LIFE OF ONE’S COMMUNITY, OFTEN THROUGH MEDIATING STRUCTURES SUCH AS SCHOOLS, NEIGHBOR-HOODS,CHURCHES, AND OTHER VOLUNTARY ASSOCIATIONS. Rappaport, 1987

PRINCIPLES OF EMPOWERMENT What Good Is A “Right To Be In The Community” With No Role, No Respect And No Resources? What Good Is A “Right To Treatment” If Treatment Is Neither Available Nor Good? • Empowerment has as its aim enhancing the possibilities for people to control their own lives • Empowerment sees people as full human beings who have both needs and rights • Empowerment conveys both a psychological sense of personal control or influence and a concern with actual social influence, political power, and legal rights

IMPLICATIONS OF AN EMPOWERMENT MODEL FOR HUMAN SERVICES • CHANGES ROLE OF PROFESSIONALS FROM THAT OF “EXPERT” TO THAT OF “COLLABORATOR” • MANY COMPETENCIES ARE SEEN AS BEING ALREADY PRESENT OR AT LEAST POSSIBLE, GIVEN NICHES AND OPPORTUNITIES • POOR FUNCTIONING IS SEEN AS A RESULT OF SOCIAL STRUCTURE AND LACK OF RESOURCES WHICH MAKE IT IMPOSSIBLE FOR EXISTING COMPETENCIES TO OPERATE

IMPLICATIONS OF AN EMPOWERMENT MODEL FOR HUMAN SERVICES • LOOKS AT MANY DIVERSE LOCAL SETTINGS WHERE PEOPLE ARE ALREADY HANDLING THEIR OWN PROBLEMS IN LIVING, IN ORDER TO LEARN HOW THEY DO IT • DEMANDS FINDING WAYS TO TAKE WHAT WE LEARN FROM THESE DIVERSE SETTINGS AND SOLUTIONS AND MAKE IT MORE PUBLIC—TO HELP FOSTER POLICIES THAT MAKE IT MORE LIKELY THAT OTHERS NOT NOW HANDLING THEIR PROBLEMS IN LIVING, OR WHO AR SHUT OUT FROM CURRENT SOLUTIONS, GAIN CONTROL OVER THEIR OWN LIVES

IMPLICATIONS OF AN EMPOWERMENT MODEL FOR HUMAN SERVICES • WHEN NEW COMPETENCIES NEED TO BE LEARNED, THEY ARE BEST LEARNED IN THE CONTEXT OF LIVING LIFE RATHER THAN IN ARTIFICIAL PROGRAMS WHERE THE EXPERT IS IN CHARGE • LENDS ITSELF TO A VARIETY OF LOCALLY RATHER THAN CENTRALLY CONTROLLED SOLUTIONS, WHICH FOSTERS SOLUTIONS BASED ON DIFFERENT ASSUMPTIONS IN DIFFERENT PLACES, SETTINGS AND NEIGHBORHOODS

IMPLICATIONS OF AN EMPOWERMENT MODEL FOR HUMAN SERVICES • POLICY DEVELOPMENT CHANGES FROM A TOP-DOWN OR FORWARD MAPPING PROCESS TO A BOTTOM UP OR BACKWARD MAPPING PROCESS THAT STARTS WITH PEOPLE AND WORKS BACKWARDS TO TELL OFFICIALS WHAT SOCIAL POLICIES AND PROGRAMS ARE NECESSARY

Deontological Institutionalization Paternalism Death-making Technicism Teleological Community Imperative Autonomy Life-affirming Empowerment PHILOSOPHICAL CONCEPTS

Segregation Least Restrictive Involuntary Tx Other determined Substitute Judgment Integration Most Inclusive Voluntary Tx Self Determination Informed Consent PHILOSOPHICAL CONCEPTS

Call or email the office: (402) 474-3183 (Voice and TDD) (800) 422-6691 (Voice and TDD) (402) 474-3274 (Fax) nas@nas-pa.org Nebraska Advocacy ServicesThe Center for Disability Rights, Law and Advocacy How to Contact Nebraska Advocacy Services, Inc. NAS has a statewide service area—we accept direct contacts or referrals from any location in Nebraska All contacts are kept confidential Stop by or mail the office: 134 S. 13, Suite 600 Lincoln, NE 68508

HISTORY OF THE DISABILITIES MOVEMENT WITH PHILOSOPHY