Michael L. Wehmeyer, Ph.D., FAAIDD

1. Intellectual Disability in the 21st Century: Self-Determination and the Third Wave of the Disability Movement Michael L. Wehmeyer, Ph.D., FAAIDD Past-President, American Association on Intellectual and Developmental Disabilities aspire forums 2012

2. 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.

3. 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). 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). The Kennedy Legacy

4. 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, Minnesota Developmental Disabilities Council http://www.mnddc.org/parallels/

5. Pennsylvania Training School, Media PA Edouard Seguin, M.D. President 1876 to 1877 H. M. Knight, M.D. President 1879 to 1880 Hervey B. Wilbur, M.D. President 1877 to 1878 Charles T. Wilbur, M.D. President 1880 to 1881 Isaac N. Kerlin, M.D. President 1891 to 1892 George W. Brown, M.D. President 1881 to 1882 Second Annual Meeting June 12-15, 1877 The AAIDD Legacy G. A. Doren, M.D. President 1878 to 1879 June 6-8, 1876

6. The AAIDD Legacy 1976 1876 Burton Blatt, EdD President 1976 to 1977 Edouard Seguin, M.D. President 1876 to 1877

7. 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. ….”

8. Establishing a New Legacy 1959 1983 1992 1977 2010 1961 2002 1973

9. History the Disability Movement • First Wave: Professionals

10. The Professional Movement • Disability attributed to deficit and disease. • People with disabilities were seen as broken, diseased, pathological, atypical, or aberrant. • Disability was viewed as a characteristic of the person; as residing within the person. • Associated with negative stereotypes; moron, menace to society, vegetative states. • Reliance on monolithic conceptualizations of intelligence as measured by IQ tests.

11. Personal Incompetence Historical Understandings of Disability Disability

12. History the Disability Movement • First Wave: Professionals • Second Wave: Parents

13. The Parent Movement

14. The Parent Movement

15. The Parent Movement

16. 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.”

17. 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).

18. 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.

19. 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.

20. History the Disability Movement • Third Wave: Self-Advocacy Movement • Community Inclusion • Empowerment • Self-Determination • Independent Living and Disability Rights • People First

21. The Normalization Movement 1.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

22. 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

23. Self-Advocacy Movement • People with intellectual disability forming social and advocacy groups. • People First Justin Dart at signing of ADA

24. 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.

25. Twenty Years in the Real World:A Struggle for Power • 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.

26. Twenty Years in the Real World:A Struggle for Power • 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.

27. History the Disability Movement • Third Wave: Self-Advocacy Movement • Community Inclusion • Empowerment • Self-Determination • Independent Living and Disability Rights • People First • Consumerism • Deinstitutionalization

28. Environment ChangingUnderstandings of Disability Disability Personal Incompetence Personal Competence

29. 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.

30. Supports Intensity Scale

31. What are Supports? • Supports pertain to resources and strategies, including individuals, money and other assets, assistive devices, and education and training; • Supports enable individuals to access other resources, information, and relationships within integrated environments; and • Supports use results in increased integration and enhanced personal growth and development

32. 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).

33. 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.

34. “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

35. “When the bellman is dead, the wind will toll the bell. So hurry wind, or revive yourselves noble bell ringers.” Burton Blatt