Intellectual Disability in the 21st

Century: Self-Determination and the Third Wave of

the Disability Movement

Michael L. Wehmeyer, Ph.D., FAAIDDPast-President, American

Association on Intellectual and Developmental Disabilities

aspire forums 2012

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Legacy

Pronunciation: 'le-g&-sEFunction: nounInflected Form: plural -ciesEtymology: Medieval Latin legatio, from Latin legare to bequeath

1. anything handed down from the past, as from an ancestor or predecessor: a legacy of religious freedom.

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The Kennedy Legacy

President John F. Kennedy gives Eunice Kennedy Shriver the pen he used to sign intellectual disability legislation in October, 1963 (photo from the collection of David Braddock, used with permission).

President Kennedy addresses the 13th Annual Convention Luncheon of the National Association for Retarded Children on October 24, 1963 at the Mayflower Hotel, Washington, DC (photo from the author’s collection).

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The Kennedy Legacy“… I think that particularly at Willowbrook, we have a situation that borders on a snake pit, and that the children live in filth, that many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, lack of adequate manpower. There is very little future for these children, for those who are in these institutions. ….”

Image and audio from Parallels in Time, MinnesotaDevelopmental Disabilities Council

http://www.mnddc.org/parallels/

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The AAIDD LegacyG. A. Doren, M.D. President 1878 to

1879

Isaac N. Kerlin, M.D. President 1891 to

1892H. M. Knight, M.D. President 1879 to

1880

George W. Brown, M.D. President 1881 to 1882

Pennsylvania Training School, Media PA

Second Annual MeetingJune 12-15, 1877

Charles T. Wilbur, M.D.

President 1880 to 1881

Hervey B. Wilbur, M.D. President 1877 to

1878

Edouard Seguin, M.D. President 1876 to

1877

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The AAIDD Legacy

Burton Blatt, EdD President 1976 to 1977

1876

1976

Edouard Seguin, M.D.President 1876 to 1877

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Establishing a New Legacy“… I think that particularly at Willowbrook, we have a situation that borders on a snake pit, and that the children live in filth, that many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, lack of adequate manpower. There is very little future for these children, for those who are in these institutions. ….”

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Establishing a New Legacy

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History the Disability Movement

• First Wave: Professionals

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The Professional Movement

1. Disability attributed to deficit and disease. People with disabilities were seen as broken, diseased,

pathological, atypical, or aberrant.

2. Disability was viewed as a characteristic of the person; as residing within the person.

3. Associated with negative stereotypes; moron, menace to society, vegetative states.

3. Reliance on monolithic conceptualizations of intelligence as measured by IQ tests.

Disability

Historical Understandings of Disability

PersonalIncompetence

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History the Disability Movement

• First Wave: Professionals• Second Wave: Parents

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The Parent Movement

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The Parent Movement

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The Parent Movement

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The Parent Movement Earlier stereotypes of disability

replaced with more humane, though still in many ways debilitating, stereotypes.

People with disabilities seen as objects to be fixed, cured, rehabilitated and pitied; as “victims” of their disabling condition, worthy of charity. Holy innocents; eternal children

Increased emphasis on “mental age.”

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A Self-Made Manby Raymond J. Gagne

“My name is Raymond J. Gagne. This is a true story. I was born on January 10, 1945 in Attleboro, Massachusetts. I am a person with cerebral palsy” (p. 327).

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Eight Years of Power• My mother felt there was something wrong

with me. She took me to many doctors and hospitals to see if they knew how to help me. They told my mother I would never walk.

• At the time, there was no school for me. I stayed home with my grandmother, who took care of me. She had her hands full.

• When I was 8, my mother told me I was going away.

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A Life of No Power:Eighteen Years in an Institution

• After arriving at the state school, I was put in Building 7.

• Every morning we would wake up at 6:00. An attendant would help me put on the clothes he had laid out the night before. I didn’t have any say about what I wore.

• The staff never seemed to prepare me for living outside the institution. They didn’t seem to think I would make it on my own. Up until the age of 14, I wasn’t allowed to go to school.

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History the Disability Movement

• Third Wave: Self-Advocacy Movement– Community Inclusion

– Empowerment

– Self-Determination

• Independent Living and Disability Rights

• People First

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The Normalization Movement1. Normal rhythm of day.

2. Normal routine of life.3. Normal rhythm of the year.4. Normal developmental experiences of the life cycle.5. The person’s choices, wishes and desires have to be taken into consideration as nearly as possible, and respected.6. Living in a bisexual world.7. Normal economic standards.8. Standards of the physical facility should be the same as those regularly applied in society to the same kind of facilities for ordinary citizens. Bengt Nirje

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Independent Living and Disability Rights Movements

• Hand in hand with civil rights and disability rights movement.

• Emphasized access and equality of opportunity, with a focus on independent living.

Ed Roberts

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Self-Advocacy Movement

• People with intellectual disability forming social and advocacy groups.

• People FirstJustin Dart

at signing of ADA

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Twenty Years in the Real World: A Struggle for Power

• The day I moved out, some staff told me I would be back in a month. They may be still waiting for me to come back.

• That same year I went on a vacation to Washington, D.C. by myself. This was the first time I had ever done this.

• During the fall I moved into my own apartment after a counselor at a camp for people with cerebral palsy told me she thought I could.

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• I learned about Section 504 of the Rehabilitation Act and helped found a self-advocacy group. I learned the skills of leadership, advocacy, consumer organizing and assertiveness by watching people, participating in group meetings and asking questions. My ability to communicate my ideas and to facilitate work toward changing the status quo developed over time.

Twenty Years in the Real World:A Struggle for Power

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• Unlike the staff at the institution, the human services professionals I met at this job treated me with respect. They gave me a chance to contribute my input and feedback and believed in many of my ideas. My colleagues also adapted the working environment to help me communicate with them.

Twenty Years in the Real World:A Struggle for Power

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History the Disability Movement

• Third Wave: Self-Advocacy Movement– Community Inclusion– Empowerment– Self-Determination

• Independent Living and Disability Rights

• People First• Consumerism• Deinstitutionalization

Disability

ChangingUnderstandings of Disability

PersonalIncompetence

Environment

PersonalCompetence

Implications of Changing Understandings of Disability

• Strengths-based • Focus on environment/context fit, not

“fixing” the individual.– “The most fundamental theme [with regard to working

toward a new agenda for ID within global context] is a refocus from a concentration on individuals with a disability to studying them within the social contexts in which they live” (Emerson, McConkey, Walsh, & Felce, 2008, p. 79). Emerson, E., McConkey, R., Walsh, P.N., &

Felce, D. (2008). Intellectual disability in a global context. Journal of Policy and Practice in Intellectual Disabilities, 5(2), 79-80.

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Supports Intensity Scale

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(1) Supports pertain to resources and strategies, including individuals, money and other assets, assistive devices, and education and training;

(2) Supports enable individuals to access other resources, information, and relationships within integrated environments; and

(3) Supports use results in increased integration and enhanced personal growth and development

What are Supports?

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Array of Supports

• Luckasson and Spitalnik (1994) suggested that “supports refer to an array, not a continuum, of services, individuals, and settings that match the person’s needs” (p. 88).

Person

Family & Friends

Nonpaid Supports

Generic Services

Specialized Services

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Establishing a New Legacy

AAIDD Mission Statement

AAIDD promotes progressive policies, sound research, effective practices and universal human rights for people with intellectual and developmental disabilities.

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“You have to have a vision. It’s got to be a vision you can articulate clearly and forcefully on every occasion. You can’t blow an uncertain trumpet.”

Establishing a New Legacy

Father Theodore Hesburgh

“When the bellman is dead, the wind will toll the bell.

So hurry wind, or revive yourselves

noble bell ringers.”

Burton Blatt