HISTORY OF THE DISABILITIES MOVEMENT WITH PHILOSOPHY

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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.

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WHY SHOULD WE KNOW THE HISTORY???

• THOSE WHO FAIL TO LEARN FROM HISTORY ARE
  CONDEMNED TO REPEAT
• IT.
• GEORGE SANTYANA

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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.

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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

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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

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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.

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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.

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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.

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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 Nebraskas state
  institution could be released only if they were
  made sterile or were otherwise incapable of
  reproduction.

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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.

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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)

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HISTORICAL TIMELINE OF SELECTED EVENTS IN NEBRASKA

• 1858 Nebraskas 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

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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.

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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.

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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.

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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 Citizens Committee on Mental
  Retardation formed.
• 1967 Citizens Study Committee on Mental
  Retardation established.

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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.

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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 Nebraskas People First movement begins.

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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.

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STEPS TOWARDS BRUTALIZATION

• The first step is stereotyping which
• Is based on a recognition that they are different
  from us.
• That results in an oversimplified opinion,
  effective attitude, or uncritical judgment.

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STEPS

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

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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 us called humanity.

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STEPS

• The fourth step is brutalization
• Since they cannot be considered humans, we are
  not obligated to treat them with the same rules
  of civilized conduct we expect of other humans.

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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

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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 Lewiss Telethon object of pity or
  charity

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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

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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.

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OPPRESSION WHAT DOES IT LOOK LIKE?

• 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.

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OPPRESSION

• Hope and privilege education, employment, living
  wage, increased earnings potential the longer the
  person works.

• Despair and poverty second rate education (if
  its an education at all), chronic unemployment,
  government benefits, life-long poverty, life-long
  vocational training.

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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

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OPPRESSION

• The skys 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

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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.

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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.

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OPPRESSION

• Humanity is never questioned at least not until
  we become one of them

• Humanity is always in question from the moment
  of ones birth until ones 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

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OPPRESSION

• Fairness and equal treatment if things arent
  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

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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

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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

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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
  individuals own worth and to confirm his
  impotence and subservience.
• Alfred Kahn, Principles of Social Planning, 1971

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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

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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

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A SOCIAL POLICY OF EMPOWERMENT

• THE CONCEPT SUGGESTS BOTH INDIVIDUAL
  DETERMINATION OVER ONES OWN LIFE, AND DEMOCRATIC
  PARTICIPATION IN THE LIFE OF ONES COMMUNITY,
  OFTEN THROUGH MEDIATING STRUCTURES SUCH AS
  SCHOOLS, NEIGHBOR-HOODS,CHURCHES, AND OTHER
  VOLUNTARY ASSOCIATIONS.
• Rappaport, 1987

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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 conveys both a psychological
  sense of personal control or influence
  and a concern with actual social
  influence, political power, and legal rights

• Empowerment sees people as full human
  beings who have both needs and rights

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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

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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 PUBLICTO 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

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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

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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

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PHILOSOPHICAL CONCEPTS

• Teleological
• Community Imperative
• Autonomy
• Life-affirming
• Empowerment

• Deontological
• Institutionalization
• Paternalism
• Death-making
• Technicism

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PHILOSOPHICAL CONCEPTS

• Segregation
• Least Restrictive
• Involuntary Tx
• Other determined
• Substitute Judgment

• Integration
• Most Inclusive
• Voluntary Tx
• Self Determination
• Informed Consent

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Nebraska Advocacy Services The Center for
Disability Rights, Law and Advocacy
How to Contact Nebraska Advocacy Services, Inc.

• Call or email the office
• [phone] (Voice and TDD)
• [phone] (Voice and TDD)
• [phone] (Fax)
• nas_at_nas-pa.org

NAS has a statewide service areawe 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