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

Legacy Pronunciation: 'le-g&-sE Function: noun Inflected Form: plural -cies Etymology: 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.

The Kennedy Legacy 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). In 1960 President John F. Kennedy, with the urging of Ms. Shriver, established the President’s Panel on Mental Retardation, which included Dr. George Tarjan, President of this association from 1959 to 1960. The panel issued 97 recommendations, many of which formed the basis for legislation and funding streams that benefit people with intellectual disability and their families to this day. Only weeks before his assassination, President Kennedy signed legislation taking this nation’s first steps toward a community-based system of supports, as shown in the photo on your left, and then spoke with members of The Arc about that historic legislation, as shown in the picture on your right.

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. ….” In 1965, Senator Robert F. Kennedy, toured the Willowbrook State School on Staten Island. Afterwards, the visibly shaken Senator addressed the press.  Click on Picture of Kennedy to Play Audio The Kennedy legacy in our field has been profound; the actions of these Kennedy siblings—who were compelled to act by their devotion to their sister, Rosemary—left a tangible legacy of community-inclusion and civil rights for people with intellectual and developmental disabilities for which we, today, owe a great debt. Image and audio from Parallels in Time, Minnesota Developmental Disabilities Council http://www.mnddc.org/parallels/

Pennsylvania Training School, Media PA The AAIDD Legacy Isaac N. Kerlin, M.D. President 1891 to 1892 Pennsylvania Training School, Media PA Edouard Seguin, M.D. President 1876 to 1877 G. A. Doren, M.D. President 1878 to 1879 H. M. Knight, M.D. President 1879 to 1880 June 6-8, 1876 George W. Brown, M.D. President 1881 to 1882 Second Annual Meeting June 12-15, 1877 Hervey B. Wilbur, M.D. President 1877 to 1878 Charles T. Wilbur, M.D. President 1880 to 1881 The AAIDD, of course, has its own legacy; both intertwined with and separate from the legacies of the Kennedy family. That legacy began almost exactly 134 years ago, on June 6, 1876 when seven men, all physicians and superintendents of training schools and institutions for people with intellectual disability, met at the Pennsylvania Training School in Media, Pennsylvania, to form an association of medical officers of such facilities. To Initiate Movement of Picture of Ohio Institution The first meeting at which professional papers were presented, as they have been every year since up to and including this year in Providence, was June 12 to 15, 1877 at the Ohio institution in Columbus. Those of you who know the history of our field and know the history of the institutions at which many of these founders worked know that the legacy of these facilities, and a portion of the legacy of our association, is a checkered one. But you should also know that the legacies of many of these founders were, in many ways, every bit as significant as those of the Kennedy family. To Initiate Movement of Picture of Seguin For example, our first president, physician Edouard Seguin can rightfully be called the Father of Special Education, having, in the early 1800s, created the first systematic and programmatic efforts to educate people with intellectual disability. The text he wrote on his system became the manual for social reformers, like the founders of the association, to establish schools for people who, previously, were abandoned to their fates in alms houses or poor houses. To Initiate Movement of Picture of Wilbur Another of the founders, Dr. Hervey Wilbur, who succeeded Seguin as the second president, established, in 1848, the first school in America for people with intellectual disability in his own home in Barre, Massachusetts.

1876 1976 The AAIDD Legacy Burton Blatt, EdD President 1976 to 1977 Of course, the AAIDD legacy has been added to and refined by leaders and members in the post-World War II era. To illustrate the significant role played by the association, its members and leaders in the modern era, consider the legacy of the President of the association during its 100th anniversary year, Dr. Burton Blatt. A decade before serving as president, compelled by Robert Kennedy’s pronouncements about Willowbrook and similar institutions, Blatt arranged to tour five institutions and brought with him photographer Fred Kaplan, who surreptitiously snapped photographs of the horrific conditions in these facilities. To Initiate Movement of Picture of Christmas in Purgatory The resulting photoessay, titled Christmas in Purgatory, juxtoposed stark and startling black and white photographs of inmates or rows of iron beds with children confined to them, with poetry verses and essays selected by Blatt, beginning with the words: “There is hell on earth and in America there is a special inferno. We were visitors there during Christmas, 1965.” Burton Blatt’s legacy—and part of the AAIDD legacy as well--is one of championing the cause of basic human rights, dignity, and community inclusion. Christmas in Purgatory catalyzed the deinstitunionalization movement and along with the federal focus on community services begun by President Kennedy and Ms. Shriver, ushered in the independent living and community supports era. So, as we, as an association, make the transition from our long-standing executive director to a new leader, I think it is apropos for us to ask ourselves what our legacy will be. What will or can we, individually but more importantly as an association, do that will have the kind of impact that our predecessors have had? In considering this, I want to return to Senator Robert Kennedy’s comments to the press in 1965 after touring Willowbrook. Edouard Seguin, M.D. President 1876 to 1877

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. ….” What has always struck me most about Senator Kennedy’s statement, and what led to the idea of Imagining the Future as a theme for this conference, was his list of reasons that, in his words “children were living in filth and our fellow citizens were suffering tremendously.” As one cause, Senator Kennedy cited a lack of attention. I take that to mean societal attention; the responsibility of citizens of our nation and of caring people to pay attention to the needs of members of our society who are at the greatest risk for discrimination and maltreatment. It refers to attention from legislators and policy makers as well as attention from average citizens. We can relate to this issue: it is with us yet today; we continue to have to fight and advocate for more attention to and for people with intellectual and developmental disabilities. Senator Kennedy also cited lack of manpower as a cause: there were too few people working in Willowbrook that day he toured, and there are too few people and resources committed to people with intellectual and developmental disabilities and their families today. We are aware of the critical issues associated with recruiting and retaining direct support professionals to support people to live better lives; issues related not only to recruitment and retention, but to the quality of the lives such workers can live on the meager wages they earn. But, I wonder if many of us would wholly embrace the third reason given by Senator Kennedy on that day as he stood outside Willowbrook: There it sits, right there between the oh-so familiar issues of lack of attention and resources. Lack of imagination. Lack of attention and lack of manpower … those were indictments of the system; of government, of society; and of others, by and large. Lack of imagination? That sounds like an indictment of our efforts, quite frankly. I’m certain no person in this room wants his or her legacy, or that of the association, to be characterized by future generations as evincing a lack of imagination. So what can we do about that? Individually, certainly, there are some members of our association that may leave a legacy to rival Edouard Seguin or Burton Blatt; but if we’re honest, the truth is that few of us will do so. The problems are so big, our resources, energy, and time so limited, what can we really expect to achieve? That is why, I think, this association is critical in my professional life and why it is critical in your professional life. If you or I want to leave a legacy that matters, a legacy of better, richer, fuller lives for people with intellectual and developmental disabilities, then I would argue that your chances of doing so are much greater within the AAIDD then on your own. Why join AAIDD? Why give of your limited time and resources? Fundamentally, I believe, it is because within AAIDD we—you and I—can leave a legacy that far exceeds that which we might leave individually.

Establishing a New Legacy 1983 2010 1977 1959 1973 1961 1992 2002 Let me mention two examples of how this association is creating a legacy that is fundamentally altering our field. One of our legacies, clearly, is our role in conceptualizing and defining the constructs that are used in our field. This year the association released the 11th Edition of its influential terminology and classification manual. The impact on the field of this effort, carried out by members who volunteer their time and talent, is significant. In the 9th Edition, the T&C task force, led by past-president Ruth Luckasson, introduced a fundamental shift in the way in which intellectual disability was understood, and with the 11th edition, under the leadership of past-president Robert Schalock, that shift comes full circle with the adoption of the term intellectual disability. You may think that the change in terminology to intellectual disability is just pro forma and, to some degree, yesterday’s news. But, the change to the term intellectual disability in the 11th Edition of the manual is not just the adoption of yet another term. I don’t have time today to go into any depth on this, and will just refer you to a series of articles in the AAIDD journal Intellectual and Developmental Disabilities or to the 11th Edition of the Manual itself for a more in depth treatment of what all of this means to our field.

History the Disability Movement First Wave: Professionals

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.

Historical Understandings of Disability Personal Incompetence

History the Disability Movement First Wave: Professionals Second Wave: Parents

The Parent Movement

The Parent Movement

The Parent Movement

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.”

A Self-Made Man by 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).

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.

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.

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

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

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

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

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.

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.

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.

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

ChangingUnderstandings of Disability Environment Personal Incompetence Personal Competence But, you should recognize that the change in the term better communicates and captures the radically different way of understanding disability introduced in the 1992 manual, away from being a problem that resided within a person … To activate motion … and, instead, focusing on the fit between a person’s capacities, their strengths, and the demands of the context in which he or she might live, learn, work or play. This understanding, in turn, introduces a supports model that challenges us to use our imagination to figure out not only how to increase personal capacity, but also to modify the environment and context and to put in place supports that will enable people to function successfully in typical environments.

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. So, the question becomes, what do we know about intellectual disability from a strengths focus?

Supports Intensity Scale A second example of how our association’s efforts are impacting the field involves the development and wide adoption of the AAIDD Supports Intensity Scale. Frustrated that the fundamental changes in how intellectual disability should be understood introduced in the 1992 manual were not being adopted, Doreen Croser asked Bob Schalock to spearhead an effort to create an instrument that would measure levels of support needs and provide an instrument or a tool to that might propel the adoption of the understanding of intellectual disability introduced in 1992. Under the leadership of committee chairperson Jim Thompson, over a five year period, a task force of AAIDD members designed and evaluated the Supports Intensity Scale. The scale’s development and implementation has provided a catalyst for fundamental changes in practice in our field. Through the leadership of Doreen and national staff in the publications department, particularly Bruce Applegren and Anu Prabhala, the SIS has been adopted by 15 States and Canadian Provinces for use in making decisions about resource allocation and supports provision, is being considered for adoption by another dozen more states or provinces, and has been translated into more than a dozen languages for use in numerous othre countries. Why? Because the SIS changes the focus of evaluation. It measures the pattern and intensity of supports necessary for a person to participate fully in activities linked with normative human functioning; it aids in the funding and design of supports that not only enhance individual functioning, but that promote the development, education, interests, and personal well-being of a person. The SIS asks users to imagine what type, intensity, and duration of supports will be needed for a person to function successfully in all aspects of his or her life; in meaningful work experiences, in community living, in establishing friendships and meaningful relationships; in living a better life. I’ve worked enough with the SIS to believe that there is really only one thing that will limit the potential of these innovative advances for fundamentally changing how we do business … Lack of imagination. The lack of imagination to envision how a person with an intellectual or developmental disability who hasn’t ever had the opportunity to work can be provided supports that enable him or her to work alongside non-disabled peers; the lack of imagination to envision the types of supports that would enable a student with intellectual disability to be successful in post-secondary education; the lack of imagination to envision what types of supports would enable a person with intellectual disability to live in his own home. To Next Slide (Plays Smart Life Video)

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

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).

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.

Establishing a New Legacy “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.” 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