FOR MORE, go to http://www.brookespublishing.com/comprehensive-guide-to-IDD

A Comprehensive Guide to Intellectual

and Developmental Disabilities

Second Edition

edited by Michael L. Wehmeyer, Ph.D. University of Kansas

Ivan Brown, Ph.D.

Brock University

Maire Percy, Ph.D.

University of Toronto Surrey Place Centre

Karrie A. Shogren, Ph.D.

University of Kansas

and Wai Lun Alan Fung, M.D., Sc.D. University of Toronto

Baltimore • London • Sydney

Excerpted from A Comprehensive Guide to Intellectual and Developmental Disabilities, Second Edition edited by Michael L. Wehmeyer, Ph.D., Ivan Brown, Ph.D., Maire Percy, Ph.D., Karrie A. Shogren, Ph.D., and Wai Lun Alan Fung, M.D., Sc.D. Brookes Publishing | www.brookespublishing.com | 1-800-638-3775 ' | All rights reserved

Contents

About the Editors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Contents

14 Down Syndrome Anna J. Esbensen and William E. MacLean, Jr. ..... 195

15 Fragile X Syndrome Cynthia J. Forster-Gibson and Jeanette Jeltje Anne Holden. ..... 209

16 Autism Spectrum Disorder Adrienne Perry, Julie Koudys, Glen Dunlap, and Anne Black ..... 219

17 22q11.2 Deletion Syndrome Nancy J. Butcher, Erik Boot, Joanne C.Y. Loo, Donna McDonald-McGinn, Anne S. Bassett, and Wai Lun Alan Fung ..... 231

18 Fetal Alcohol Spectrum Disorder, Part I: Diagnosis, Neurobehavioral Functions, and Interventions in Children Catherine McClaim, E. Louise Kodituwakku, and Piyadasa W. Kodituwakku ..... 243

19 Fetal Alcohol Spectrum Disorder, Part II: Challenges in Ad

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Contents

31 Speech, Language, and Communication Assessments and Interventions Nancy Brady and Laura Hahn ..... 447

32 Augmentative and Alternative Communication Cathy Binger and Jennifer Kent-Walsh ..... 461

V Intellectual and Developmental Disabilities Through the Life Span

33 The First 1,000 Days of Fetal and Infant Development Maire Percy, Karolina Machalek, Ivan Brown, Paula E. Pasquali, and Wai Lun Alan Fung..... 475

34 Early Intervention for Young Children Elaine B. Frankel, Kathryn Underwood, and Peggy Goldstein ..... 495

35 Maltreatment of Children with Developmental Disabilities Ann Fudge Schormans and Dick Sobsey ..... 509

36 Education for Students with Intellectual and Developmental Disabilities Michael L. Wehmeyer, Karrie A. Shogren, and Ivan Brown ..... 527

37 The Transition from School to Adult Life Ivan Brown, Michael L. Wehmeyer

VI Health 45 Ethics of Decision Making and Consent in People with Intellectual and Developmental Disabilities John Heng and William F. Sullivan ..... 655 46 Physical Health Tom Cheetham and Shirley McMillan ..... 665 47 People with Intellectual and Developmental Disabilities and Mental Health Needs Jane Summers, Robert Fletcher, and Elspeth Bradley ..... 679

Contents

48 Nutritional Considerations for Children with Intellectual and Developmental Disabilities Diana R. Mager ..... 695

49 Alzheimer's Disease and Dementia: Implications for People with Down Syndrome and Other Intellectual or Developmental Disabilities Vee P. Prasher, Matthew P. Janicki, Emoke Jozsvai, Joseph M. Berg, John S. Lovering, Ambreen Rashid, Wai Lun Alan Fung, and Maire Percy.....709

VII The Future

50 Future Trends and Advances in Intellectual and Developmental Disabilities Michael L. Wehmeyer and Karrie A. Shogren.....737

Index.....745

About the Editors

Michael L. Wehmeyer, Ph.D., Ross and Marianna Beach Distinguished Professor of Special Education; Director and Senior Scientist, Beach Center on Disability; Co-Director, Kansas University Center on Developmental Disabilities, University of Kansas, 1200

Developmental Disabilities, University of Kansas, 1200 Sunnyside Avenue, Room 3136, Lawrence, KS 66045. Michael L. Wehmeyer is Ross and Marianna Beach Distinguished Professor of Special Education; Director and Senior Scientist, Beach Center on Disability; and Co-Director, Kansas University Center on Developmental Disabilities, all at the University of Kansas. Dr. Wehmeyer is the author or coauthor of more than 350 peer-reviewed journal articles or book chapters and has been an author or editor for 35 books on disability- and education-related issues, including issues pertaining to self-determination, conceptualizing intellectual disability and supports, applied cognitive technologies, and the education and inclusion of learners with extensive and pervasive support needs. Dr. Wehmeyer is Past President and a Fellow of the American Association on Intellectual and Developmental Disabilities (AAIDD); Past President of the Council for Exceptional Children’s Division on Career Development and Transition; a Fellow of the American Psychological Association, Intellectual and Developmental Disabilities Division (Division 33); and a Fellow and former Vice President for the Americas of the International Association for the Scientific Study of Intellectual and Developmental Disabilities. He is former Editor of the journal Remedial and Special Education and is a founding Co-editor of the AAIDD journal Inclusion. He is a coauthor of the AAIDD Supports Intensity Scale (2004) and the 2010 AAIDD Intellectual Disability: Definition, Classification, and Systems of Supports manual. He has been recognized for his research and service with awards from numerous associations and organizations, including the American Psychological Association Distinguished Contributions to the Advancement of Disability Issues in Psychology Award, the AAIDD Research Award, the Distinguished Researcher Award for lifetime contributions to research in intellectual dis-

Michael L. Wehmeyer, Ph.D., Ross and Marianna Blatt Humanitarian Award from the Council for Beach Distinguished Professor of Special Education; Exceptional Children (CEC) Division on Autism and Director and Senior Scientist, Beach Center on Dis-Developmental Disabilities, and the CEC Special ability; Co-Director, Kansas University Center on Education Research Award for 2016. Dr. Wehmeyer Developmental Disabilities, University of Kansas, 1200 holds undergraduate and master’s degrees in special Sunnyside Avenue, Room 3136, Lawrence, KS 66045. education from the University of Tulsa and a master’s degree in experimental psychology from the Michael L. Wehmeyer is Ross and Marianna Beach University of Sussex in Brighton, England, where Distinguished Professor of Special Education; Direc-he was a Rotary International Fellow from 1987 to tor and Senior Scientist, Beach Center on Disabil-1988. He earned his Ph.D. in human development ity; and Co-Director, Kansas University Center on and communication sciences from the University Developmental Disabilities, all at the University of of Texas at Dallas, where he received a 2014 Distin-

President and a Fellow of the American Associa-Journal on Developmental Disabilities tion on Intellectual and Developmental Disabilities (AAIDD); Past President of the Council for Excep-Ivan Brown is an internationally recognized expert tional Children’s Division on Career Development in intellectual and developmental disabilities. He and Transition; a Fellow of the American Psycho-has a strong history of community involvement in logical Association, Intellectual and Developmental disability, serving on numerous government, legal, Disabilities Division (Division 33); and a Fellow and and community agency committees, task forces, former Vice President for the Americas of the Inter-and boards and acting in leadership roles with sevnational Association for the Scientific Study of Intel-eral professional organizations. In particular, he lectual and Developmental Disabilities. He is former was a longtime member of the Board of Directors Editor of the journal Remedial and Special Education of the Ontario Association on Developmental Disand is a founding Co-editor of the AAIDD journal abilities and served a term as its Chair. For almost 2 Inclusion. He is a coauthor of the AAIDD Supports decades, he has held positions in the International Intensity Scale (2004) and the 2010 AAIDD Intellec-Association for the Scientific Study of Intellectual tual Disability: Definition, Classification, and Systems and Developmental Disabilities, is a Fellow of that of Supports manual. He has been recognized for organization, sits on the governing Council, and his research and service with awards from numer-is currently Co-chair of the Quality of Life Special ous associations and organizations, including the Interest Research Group and Director of its Acad- American Psychological Association Distinguished emy for Education, Teaching, and Research. Dr. Contributions to the Advancement of Disability Brown has published widely in the academic litera- Issues in Psychology Award, the AAIDD Research ture and has written or edited 14 scholarly books Award, the Distinguished Researcher Award for and many journal articles and book chapters, and lifetime contributions to research in intellectual dis-he has authored numerous reports and measure-

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

About the Editors

viii About the Editors he has edited three editions of the highly successful text Developmental Disabilities in Ontario. In addition, he has been a member of the editorial boards of several journals in the field of intellectual and developmental disabilities over the years and has contributed hundreds of peer reviews. During his career at the University of Toronto, he initiated several major quality of life studies and managed two national research centers with a special focus on disability issues as they relate to health promotion, child welfare, and indigenous populations. As a retiree, Dr. Brown remains an active contributor to the field of intellectual and developmental disabilities through ongoing lecturing; leading workshops; writing and editing; consulting; volunteering with disability organizations; serving as Director of the International Association for the Scientific Study of Intellectual and Developmental Disabilities’ Academy on Education, Teaching and Research; and teaching as an adjunct professor of Applied Dis-

Maire Percy, Ph.D., Professor Emeritus, Departments of Physiology and Obstetrics and Gynaecology, Faculty of Medicine, University of Toronto; Former Director of the Neurogenetics Laboratory, Surrey Place Centre; Vice-Chair, Research Ethics Board, Surrey Place Centre, 2 Surrey Place, Toronto,

ON M5S 2C2, Canada Maire Percy is an internationally recognized Canadian neurogeneticist, a full emeritus professor of the University of Toronto (Physiology and Obstetrics and Gynaecology), and Vice Chair of the Research Ethics Board at Surrey Place Centre (an organization dedicated to improving the quality of life for people with developmental disabilities and their families). From 1989 to 2012, she was Director of the Surrey Place Centre Neurogenetics Laboratory. She obtained degrees from the University of Toronto (B.Sc., physiology and biochemistry; M.A., medical biophysics; Ph.D., biochemistry; and A.R.C.T. from the Royal Conservatory of Music of Toronto, piano). As a Medical Research Council postdoctoral fellow, she trained in immunology and genetics at the Agricultural Research Council of Animal Physiology (Babraham, United Kingdom) and the Hospital for Sick Children (Toronto, Canada). Supported initially by a National Health Research Scholar Award, she

About the Editors he has edited three editions of the highly success-training/mentoring programs to identify genetic, ful text Developmental Disabilities in Ontario. In addi-metabolic, and environmental risk factors caustion, he has been a member of the editorial boards ing or contributing to serious human diseases and of several journals in the field of intellectual and disorders, including dementia among older people developmental disabilities over the years and has with Down syndrome. Material from an innovative contributed hundreds of peer reviews. During his and interactive graduate course that she developed career at the University of Toronto, he initiated (called The Neuroscience of Developmental Disseveral major quality of life studies and managed abilities) motivated the conception of two textbooks two national research centers with a special focus co-edited with her colleague, Ivan Brown: Developon disability issues as they relate to health promo-mental Disabilities in Ontario (now in its third edition, child welfare, and indigenous populations. As tion) and the first edition of A Comprehensive Guide a retiree, Dr. Brown remains an active contributor to to Intellectual and Developmental Disabilities. Although the field of intellectual and developmental disabili-formally retired, she continues to publish research ties through ongoing lecturing; leading workshops; articles and book chapters, review articles and grant writing and editing; consulting; volunteering with applications, organize community courses for laterdisability organizations; serving as Director of the life learners, and serve on the editorial boards of International Association for the Scientific Study of two journals (Journal on Developmental Disabilities Intellectual and Developmental Disabilities’ Acad-and International Journal of Developmental Disabilities). emy on Education, Teaching and Research; and Honors include the Ontario Association on Developteaching as an adjunct professor of Applied Dis-mental Disabilities Award of Excellence and the June Callwood Award for important contributions to the field of developmental disabilities. Asteroid 32207 is

Avenue, Room 3136, Lawrence, KS 66045 Maire Percy is an internationally recognized Canadian neurogeneticist, a full emeritus professor of the Karrie A. Shogren is Professor of Special Education; University of Toronto (Physiology and Obstetrics Co-Director and Senior Scientist, Kansas University and Gynaecology), and Vice Chair of the Research Center on Developmental Disabilities; and Associate Ethics Board at Surrey Place Centre (an organiza-Director, Beach Center on Disability, all at the Unition dedicated to improving the quality of life for versity of Kansas. Dr. Shogren’s research focuses on people with developmental disabilities and their self-determination and systems of support for peofamilies). From 1989 to 2012, she was Director of the ple with disabilities as well as applications of posi- Surrey Place Centre Neurogenetics Laboratory. She tive psychology and strengths-based approaches to obtained degrees from the University of Toronto people with intellectual and developmental disabil- (B.Sc., physiology and biochemistry; M.A., medical ities; she has a specific interest in contextual factors biophysics; Ph.D., biochemistry; and A.R.C.T. from that affect student outcomes. Her work focuses on the Royal Conservatory of Music of Toronto, piano). developing and researching the efficacy and effec- As a Medical Research Council postdoctoral fellow, tiveness of assessment and intervention approaches she trained in immunology and genetics at the Agri-for students with and without disabilities to procultural Research Council of Animal Physiology mote self-determination, with a particular focus (Babraham, United Kingdom) and the Hospital for on the role of these approaches in the transition to Sick Children (Toronto, Canada). Supported initially adult life and engagement in meaningful adult roles by a National Health Research Scholar Award, she and responsibilities. Dr. Shogren has published

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

About the Editors is the author or co author of 10 books, and is a coauthor of Intellectual Disability: Definition, Classification, and Systems of Support, the 11th edition of the American Association on Intellectual and Developmental Disabilities’ (AAIDD’s) seminal definition of intellectual disability (formerly mental retardation). In addition, she is a co author of AAIDD’s Supports Intensity Scale— Children’s Version and Supports Intensity Scale—Adult Version. Dr. Shogren has received grant funding from several sources, including the Institute of Education Sciences and National Institute on Disability, Independent Living, and Rehabilitation Research. Dr. Shogren is Co-editor of Inclusion and Remedial and Special Education and Associate Editor of Research and Practice for Persons with Severe Disabilities. She has received the Council for Exceptional Children’s Division for Research Distinguished Early Career Research Award and the American Association on Intellectual and Developmental Disabilities Early Career Award. Dr. Shogren completed bachelor and master’s degrees in psychology at Ohio State University and the University of Dayton, respectively, and her doc-

Wai Lun Alan Fung, M.D., Sc.D., Assistant Professor, University of Toronto Faculty of Medicine; Chair of Research Ethics Board and Medical Director of Research, Department of Psychiatry, North York General Hospital, 4001 Leslie Street, Toronto, ON

M2K 1E1, Canada Wai Lun Alan Fung is a medical specialist in psychiatry who is also board certified in the subspecialties of Behavioral Neurology & Neuropsychiatry (United Council for Neurologic Subspecialties, United States) and Sleep Medicine (American Board of Psychiatry and Neurology). He serves as Medical Director of Research of the Department of Psychiatry, as well as Chair of the Research Ethics Board, at North York General Hospital—an affiliated teaching hospital of the University of Toronto Faculty of Medicine in Toronto, Ontario, Canada. He is also Assistant Professor of Psychiatry at the University of Toronto as well as Affiliate Scientist of the Toronto General Research Institute. As a neuropsychiatrist focusing on genetic disorders, he has

About the Editors author of 10 books, and is a coau-deletion syndrome (22q11.2DS) and Huntington disthor of Intellectual Disability: Definition, Classifica-ease in adults and in adolescents making the trantion, and Systems of Support, the 11th edition of the sition to adulthood. His interests in intellectual American Association on Intellectual and Develop-and developmental disabilities were first ignited mental Disabilities’ (AAIDD’s) seminal definition through a medical school research project as part of intellectual disability (formerly mental retardation). of Ivan Brown’s pioneering Family Quality of Life author of AAIDD’s Supports in Intellectual Disabilities study. Dr. Fung has sub- Children’s Version and Supports Inten-sequently continued his professional involvement sity Scale—Adult Version. Dr. Shogren has received with intellectual and developmental disabilities grant funding from several sources, including through his work in 22q11.2DS. He was the lead the Institute of Education Sciences and National coauthor of the first set of guidelines for manag- Institute on Disability, Independent Living, and ing adult patients with 22q11.2DS, endorsed by Rehabilitation Research. Dr. Shogren is Co-editor the 22q11.2 Society (the international professional of Inclusion and Remedial and Special Education and organization dedicated to the study of chromosome Associate Editor of Research and Practice for Persons 22q11.2 and related disorders). He has also served with Severe Disabilities. She has received the Coun-as Founding Knowledge Officer of The 22q11.2 cil for Exceptional Children’s Division for Research Society. During 2012–2015, he served as Found- Distinguished Early Career Research Award and ing Co-Director of the Dalglish Family 22q Clinic the American Association on Intellectual and at Toronto General Hospital in Canada—the first Developmental Disabilities Early Career Award. comprehensive, multidisciplinary clinic of its kind Shogren completed bachelor and master’s worldwide fully dedicated to the care of adults with degrees in psychology at Ohio State University and 22q11.2DS and their families. He is a member of the the University of Dayton, respectively, and her doc-International Consortium on Brain and Behavior in 22q11.2DS as well as an investigator member of the Huntington Study Group. He has also served in leadership roles in such professional organiza- Wai Lun Alan Fung, M.D., Sc.D., Assistant Profes-tions as the American Psychiatric Association and sor, University of Toronto Faculty of Medicine; Chair the American Neuropsychiatric Association. His of Research Ethics Board and Medical Director of other professional interests include neuropsychiat- Research, Department of Psychiatry, North York ric genetics and pharmacogenetics; the cultural and General Hospital, 4001 Leslie Street, Toronto, ON spiritual dimensions of mental health care; medical quality improvement through knowledge mobilization, utilization of information technology, intra- Wai Lun Alan Fung is a medical specialist in psy-and interprofessional collaboration, and education; chiatry who is also board certified in the subspe-and patient- and family-centered collaborative care. cialties of Behavioral Neurology & Neuropsychiatry He has published in leading journals such as Journal (United Council for Neurologic Subspecialties, of the American Medical Association, JAMA Psychiatry, United States) and Sleep Medicine (American Lancet Psychiatry, American Journal of Psychiatry, Brit- Board of Psychiatry and Neurology). He serves as ish Journal of Psychiatry, World Psychiatry, Neurology, Medical Director of Research of the Department of Genetics in Medicine, and Social Science and Medicine. Psychiatry, as well as Chair of the Research Ethics Dr. Fung completed his undergraduate and medical Board, at North York General Hospital—an affili-degrees, as well as his residency training in psychiaated teaching hospital of the University of Toronto try, at the University of Toronto. He also completed Faculty of Medicine in Toronto, Ontario, Canada. a master’s degree in epidemiology at the University He is also Assistant Professor of Psychiatry at the of Cambridge, United Kingdom, and a research doc- University of Toronto as well as Affiliate Scientist of torate and research fellowship in neuropsychiatric the Toronto General Research Institute. As a neuro-genetic epidemiology at Harvard University. He is psychiatrist focusing on genetic disorders, he has a Fellow of both the Royal College of Physicians of

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

Changing Perspectives on Intellectual and Developmental Disabilities

Michael Bach

WHAT YOU WILL LEARN

WHAT YOU WILL LEARN • How the term intellectual and developmental dis-

• How the term intellectual and developmental disabilities is currently understood • Three perspectives on disability: legal, biomedi-

• Three perspectives on disability: legal, biomedical, and social and human rights models

cal, and social and human rights models • The historical roots in law of these perspectives • Limitations of perspectives that focus only on

• Limitations of perspectives that focus only on “deficits” and “impairments” • How the claims to human rights are changing

munity, and state obligations to this group?

predominant perspectives on disability This chapter looks at three different perspectives on intellectual and developmental disabilities and at how these have influenced supports to people with disabilities. Perspectives have shifted over time as the limitations of certain concepts of disability became apparent and alternatives were put forth. Underlying the shifting perspectives are different responses to the following questions: What is disability? How should society identify and come to know the needs of people labeled this way? What are family, com-

used to refer to people whose intellectual capacities, communication skills, and/or behavior are How the term intellectual and developmental dis-determined to be developing, or to have developed, at a slower rate or to a lesser extent than what is deemed to be typical. In defining intellectual and developmental disabilities this way, the focus is on what scientific, legal, and service communities have determined to be “normal” paths of human development. These terms suggest that there is a normal path to human development and to human intellectual activity and that people who are deemed to have disabilities in these areas are somehow differ- This chapter looks at three different perspectives on ent because they do not fit within the normal path. intellectual and developmental disabilities and at The notion that normalcy can be reliably defined how these have influenced supports to people with in these areas—as well as the advisability of even disabilities. Perspectives have shifted over time as the doing so—have increasingly come into question limitations of certain concepts of disability became since the mid-1990s (Amundson, 2000; Davis, 2010;

often understood to be one of a cluster of categories Author’s note: The author is grateful to Maureen Connolly and Ivan Brown for their helpful suggestions and additions to

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

36 the world. For example, McIntosh (2002) and Peters (2000) showed how others actively socially construct people with disabilities as being passive and in need of control and management. Also, as Fawcett (2000) suggested, those humans with the power to generate and control the use of knowledge and language often pathologize other humans because of their particu-

and control the use of knowledge and language often pathologize other humans because of their particular intellectual, physical, and genetic characteristics. However, even deeply rooted and accepted truths can be challenged. New social constructions are born as those who have been objectified by dominant ways of seeing and knowing speak back and challenge so-called truths that do not actually reflect their own ways of seeing themselves—often experienced as violations to their dignity and equal respect. This is certainly the case as women, ethnoracial, and sexual minorities challenge dominant gendered, sexist, racialized, and heteronormative labels and categories. Similarly, people with intellectual and developmental disabilities, and their advocates, increasingly challenge the idea that intellectual and developmental disabilities are by definition “deficits” or “impairments,” and instead some are beginning to call for recognition of “cognitive diversity.” Around the world, people with intellectual and developmental disabilities and their families are calling for an end to poverty and exclusion, for a right to live in communities outside of institutional care, for full inclusion in quality education, and for the right to have their legal capacity and decisions over their own lives respected, including the right to vote, to marry, and to control their own bodies and their own property (Inclusion Interna-

bodies and their own property (Inclusion International, 2006, 2009, 2012, 2014). In this respect, legitimate knowledge about disabilities emerges from the diverse voices of people with disabilities themselves rather than from others talking about them. These and other views may seem to compete with one another, and indeed many do, but each represents its own “truth” about how disabilities are understood. Together, these views aid understanding that intellectual or developmental disability is not a fixed and absolute fact or feature of a person. It is a human-made lens shaped through culture, law, and political struggles throughout history (Carlson, 2010). The starting point is to recognize, as critical theorists in this area have done since the latter part of the 20th century, that intellectual or developmental disability—or one of its predecessor categories such as mental retardation, mental deficiency, or

Bach the world. For example, McIntosh (2002) and Peters categories. As Carlson noted, they are constructed (2000) showed how others actively socially construct through various disciplines and power relations that people with disabilities as being passive and in need often end up leaving people with intellectual disabili-

people with disabilities as being passive and in need often end up leaving people with intellectual disabiliof control and management. Also, as Fawcett (2000) ties objectified as different from the norm: suggested, those humans with the power to generate What is fascinating about mental retardation as a and control the use of knowledge and language often classification is its persistence. Perhaps it is precisely because of, not in spite of, its heterogeneity, instability, ability to generate prototype effects, and its place within various constellations of power that it However, even deeply rooted and accepted survived for so long. As long as there are experts truths can be challenged. New social constructions in different disciplines to define them, institutions are born as those who have been objectified by to house them, schools to teach them, scientists to dominant ways of seeing and knowing speak back study them, psychologists to test them, educators and challenge so-called truths that do not actually tolassify them, people to judge them, and theorists c to debate the validity of the label itself, persons with reflect their own ways of seeing themselves—often intellectual disabilities will continue to be objects of

intellectual disabilities will continue to be objects of experienced as violations to their dignity and equal knowledge. (2010, p. 101) respect. This is certainly the case as women, ethnoracial, and sexual minorities challenge dominant Three of the most important lenses for viewing gendered, sexist, racialized, and heteronormative intellectual and developmental disability—legal, biolabels and categories. Similarly, people with intel-medical, and social and human rights perspectives— lectual and developmental disabilities, and their are discussed in this chapter, and an emerging

advocates, increasingly challenge the idea that intel-“radical disability” lens is touched upon as well. lectual and developmental disabilities are by definition “deficits” or “impairments,” and instead some DEVELOPMENTAL

DEVELOPMENTAL are beginning to call for recognition of “cognitive DISABILITY AS A LEGAL STATUS diversity.” Around the world, people with intellectual and developmental disabilities and their fami-There are many legal and social histories to the terms lies are calling for an end to poverty and exclusion, intellectual disability and developmental disability (and for a right to live in communities outside of institu-similar terms that predate them). They evolved in tantional care, for full inclusion in quality education, dem with the institution of legal personhood, which and for the right to have their legal capacity and expresses what defines individuals to whom rights decisions over their own lives respected, including and responsibilities apply in any particular legal conthe right to vote, to marry, and to control their own text. Early Roman law established the legal category of bodies and their own property (Inclusion Interna-personne, and thus provided a legal norm from which those now thought of as having intellectual or devel- In this respect, legitimate knowledge about dis-opmental disabilities began to be marked as different. abilities emerges from the diverse voices of people Carrithers, Collins, and Lukes (1985) reviewed the with disabilities themselves rather than from others development of notions of personhood in different cultalking about them. These and other views may seem tures over the centuries preceding and succeeding this to compete with one another, and indeed many do, early Roman innovation and showed how the category but each represents its own “truth” about how dis-of person, just like the category of intellectual disabilabilities are understood. Together, these views aid ity, is subject to shifting perspectives and conflicts over

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

Changing Perspectives provide for those deemed incompetent to manage their personal or financial affairs. Chapter IX of the law states, “The King shall have the Custody of the Lands of natural Fools, taking the Profits of them without Waste or Destruction, and shall find them

without Waste or Destruction, and shall find them their necessaries” (Shelford, 1833, p. 10). Determinations of incompetency to manage one’s estate or person were made by jury trials at inquisitions called for the purpose. These determinations were the purview of the courts and juries exclusively, but they acted on the royal prerogative— the parens patriae power (Neugebauer, 1996). As Foucault (1965) argued, it was from the 14th century on that reason and rationality became the defining feature of what it meant to be a person, and culture, science, and public policy since that time rests largely on this assumption. Development of statutory law during this period suggests that what reason comes to mean is constructed in tandem with the legal

during this period suggests that what reason comes to mean is constructed in tandem with the legal articulation of lunacy and idiocy. State obligations to people with a disability were consolidated in England with the passage of the Poor Law in 1601 (Hirst & Michael, 2003; King, 2000; Rushton, 1988). This statute established a distinction between the “worthy” and the “unworthy” poor and was later adopted in many of England’s colonies. Adults with disabilities considered unable to work were, by this law, deemed worthy and entitled to state provision. The law contributed to a marginalized economic and social status for people with disabilities that still continues. By linking disability and inability to work, the law and its ensuing amendments institutionalized the idea that people with disabilities did not fit into the labor market, an assumption that still drives much employmentrelated policy. In addition, by considering people with disabilities as “worthy poor,” the state promised slightly better provision than for the “unworthy” poor—those who were deemed able-minded and able-bodied but unwilling to work. However, the cost of obtaining richer provision was the adoption of disability as a legally sanctioned charity status, one that people with disabilities are still trying

Changing Perspectives provide for those deemed incompetent to manage industrialization and the infrastructure of contract their personal or financial affairs. Chapter IX of the law that supported it established requirements for law states, “The King shall have the Custody of the what it meant to be a person at law and to be recog- Lands of natural Fools, taking the Profits of them nized as such in social and economic relationships without Waste or Destruction, and shall find them (Cossman, 1990; Poole, 1985, 1991). People with intellectual or developmental disabilities thus came to be Determinations of incompetency to manage seen as a threat to the upholding of contract law— one’s estate or person were made by jury trials at they were not seen as having the necessary reason inquisitions called for the purpose. These determi-and rationality to exercise responsibility in entering nations were the purview of the courts and juries into and fulfilling contracts. So a means other than exclusively, but they acted on the royal prerogative— providing them a right to enter contracts had to be

exclusively, but they acted on the royal prerogative— providing them a right to enter contracts had to be the parens patriae power (Neugebauer, 1996). As Fou-found to ensure their basic needs were met. cault (1965) argued, it was from the 14th century on The 1890 English Lunacy Act was a successor that reason and rationality became the defining fea-to De Prerogativa Regis and consolidated legal proviture of what it meant to be a person, and culture, sci-sions related to lunacy and the parens patriae jurisdicence, and public policy since that time rests largely tion of the courts. The legislation was made effective on this assumption. Development of statutory law under colonial law in many other countries under during this period suggests that what reason comes British colonial rule. By conferring a differential to mean is constructed in tandem with the legal legal status on people with a developmental disability, the parens patriae power helped to institutionalize State obligations to people with a disability the idea that what made a human being a person were consolidated in England with the passage of was the ability to meet certain tests of reason. Instithe Poor Law in 1601 (Hirst & Michael, 2003; King, tutional care for people labeled as “idiots,” “fools,” 2000; Rushton, 1988). This statute established a dis-or “lunatics” grew in succeeding years for those who tinction between the “worthy” and the “unworthy” were not considered to have the requisite “reason” poor and was later adopted in many of England’s to be recognized as a person, and thus to enter concolonies. Adults with disabilities considered unable tracts or take on other rights and responsibilities. to work were, by this law, deemed worthy and Consequently, such people were shut more and more

centuries-old assumption (Bach & Kerzner, 2010). As contracts between people increasingly came

to work were, by this law, deemed worthy and Consequently, such people were shut more and more entitled to state provision. The law contributed to a away from the mainstream of society. marginalized economic and social status for people The traces of these legal boundaries of intellecwith disabilities that still continues. By linking dis-tual and developmental disability are still embedability and inability to work, the law and its ensuing ded in law. The statutory equation in guardianship amendments institutionalized the idea that people law, for example, between legal capacity and menwith disabilities did not fit into the labor market, tal capacity demonstrates the deeply entrenched an assumption that still drives much employment-assumption that in order to have legal power over related policy. In addition, by considering people one’s life respected and protected, one must meet with disabilities as “worthy poor,” the state prom-certain standards of intellectual functioning. ised slightly better provision than for the “unwor-Despite international human rights treaties to chalthy” poor—those who were deemed able-minded lenge this equation between the right to legal capacand able-bodied but unwilling to work. However, ity and having certain levels of mental capacity, and the cost of obtaining richer provision was the adop-the obligation to provide support in decision making tion of disability as a legally sanctioned charity sta-rather than to rely on substituted decision making, tus, one that people with disabilities are still trying domestic law in many countries is still shedding this

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

38 committal to institutions. The growing medical profession was called upon to play this regulatory role and, over the 18th and 19th centuries, the powers to determine competence shifted from juries of inquisition under the courts to physicians. By the end of the 18th century, the Royal College of Physicians in England was responsible for the licensing of “madhouses.” By mid-19th century, resident physicians were required in madhouses of more than 100 people. In the same period, the Association of Medical Officers of Hospitals for the Insane was established, and the organization published a diagnostic manual that included such categories as “mania,” “melancholy,” “monomania,” “dementia,” “moral insanity,” “idiocy,” “imbecility,” “general paralysis,” and “epilepsy” (Weistubb, 1990). The manual is one of the precursors of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (American Psychiatric Association, 2013), widely used to “diagnose” intel-

precursors of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (American Psychiatric Association, 2013), widely used to “diagnose” intellectual, developmental, and other disabilities. The idea that disability was not a status that was conferred, but was in fact an individual deficit, gained strength in the early 20th century when Binet and Simon developed the first intelligence test to identify children in France who were not progressing in school. The test was adapted and, increasingly over the 20th century, became the most common instrument for diagnosing “feeble-mindedness,” “mental deficiency,” and “mental retardation.” Standardized intelligence tests were developed for different age ranges and normal deviations were constructed as a means of identifying as subnormal those who fell below the range considered to be normal. Developmental tests were later designed to measure how closely individuals met “developmental” targets at each age. The discrepancy in measures on language, motor, and behavioral development assisted in defining various categories of what is

assisted in defining various categories of what is now called intellectual and developmental disability. These various strands in the evolution of the law and science of disability converged with research and public policy in disability generally. Many definitions were generated over the 20th century and, in 1980, the World Health Organization (WHO) suggested three elements of a definition within what came to be known as the International Classification

Bach • Disability. In the context of health experience, fession was called upon to play this regulatory role a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range con-

from an impairment) of ability to perform an and, over the 18th and 19th centuries, the powers to activity in the manner or within the range considered normal for a human being. sition under the courts to physicians. By the end of • Handicap. In the context of health experience, a the 18th century, the Royal College of Physicians in handicap is a disadvantage for a given individual, resulting from an impairment or disability, houses.” By mid-19th century, resident physicians that limits or prevents the fulfilment of a role that is normal (depending on age, sex, social and cultural factors) for that individual. (Wood,

were required in madhouses of more than 100 peoand cultural factors) for that individual. (Wood, ple. In the same period, the Association of Medical 1980, pp. 27–29) Officers of Hospitals for the Insane was established, and the organization published a diagnostic manual This definition, with its focus on abnormality and that included such categories as “mania,” “melan-lack of ability in relation to a norm and on placing choly,” “monomania,” “dementia,” “moral insanity,” pathology within the individual’s body (Siebers, “idiocy,” “imbecility,” “general paralysis,” and “epi-2008; Straus, 2010), is consistent with the language lepsy” (Weistubb, 1990). The manual is one of the of intellectual and developmental disability since its precursors of the Diagnostic and Statistical Manual of inception in law more than 600 years ago. It is also Mental Disorders, Fifth Edition (American Psychiatric consistent with the many other definitions where Association, 2013), widely used to “diagnose” intel-developmental or intellectual disability is related to “deficits” or “impairments” in conceptual, practical, The idea that disability was not a status that and social intelligence (Greenspan & Driscoll, 1997) was conferred, but was in fact an individual deficit, or lower than “normal” functioning in intellectual gained strength in the early 20th century when Binet abilities (e.g., reasoning, acculturation knowledge, and Simon developed the first intelligence test to short and long-term memory, visual and auditory identify children in France who were not progress-processing, processing speed, quantitative knowl-

identify children in France who were not progress-processing, processing speed, quantitative knowling in school. The test was adapted and, increasingly edge; Horn & Noll, 1997). over the 20th century, became the most common The main limitation of the biomedical view is instrument for diagnosing “feeble-mindedness,” that it categorizes individuals as abnormal in rela- “mental deficiency,” and “mental retardation.” tion to norms of intelligence, even though these vary Standardized intelligence tests were developed for through history. Thus, as Goodey (2011) suggested, a different age ranges and normal deviations were person identified in the 21st century as “intellectuconstructed as a means of identifying as subnor-ally disabled” would not have the same qualities as mal those who fell below the range considered to be a person seen to be lacking the needed capabilities to normal. Developmental tests were later designed to meet norms of intelligence in the classical Greek era. measure how closely individuals met “developmen-Intellectual disability is always defined (by others) tal” targets at each age. The discrepancy in measures in relation to norms of intelligence and intellectual on language, motor, and behavioral development capacity, which are themselves bound by social, culassisted in defining various categories of what is tural, and economic contexts. For example, the most recent definition of intellectual disability adopted by These various strands in the evolution of the law the American Association on Intellectual and Develand science of disability converged with research opmental Disabilities (AAIDD) uses these norms and public policy in disability generally. Many defi-(AAIDD, 2013; Schalock et al., 2010). To AAIDD, intelnitions were generated over the 20th century and, lectual disability is a disability that becomes apparin 1980, the World Health Organization (WHO) sug-ent before the age of 18 and that is characterized by gested three elements of a definition within what significant limitations in intellectual functioning came to be known as the International Classification (general mental capacity; e.g., learning, reasoning, problem solving) and in adaptive behavior (everyday social and practical skills), both measured against

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

Changing Perspectives “norms” of development, but these norms remain just that—statistical constructions. Deviations from the norms do not signify “abnormal” development; they merely represent statistical deviations from a presumed norm. In this view, if children, youth, or adults do not proceed developmentally through a set of common functions, developmental stages, or critical developmental periods, then they are to be considered abnormal or to have deviations in physical, emotional, or skill development. This assumption, which has served to frame much of the practice in education, developmental psychology, and social science research, is increasingly being called into question (Amundson, 2000; Skrtic, 1991). It has been suggested that rather than being scientific and objective, the concept of functional normality reflects the beliefs, preferences, and cultural expectations of a majority of the members of society. As Amundson suggested, if what it means to be normal is indeed a product of the culture, then the yardsticks for measuring normalcy lack universal and scientific validity, and “disadvantages experienced by people assessed as abnormal derive not from biology, but from implicit social judgments about the acceptability of certain kinds of biological variation” (p. 33). The definition of normal becomes arbitrary, relative, and specific to the historical context in which it

at a population level, trends in development can be found across children and subgroups of children. Mackelprang and Salsgiver (1999) pointed to some of the intellectual foundations of a broader view of developmental theory that begin to address the cultural biases of predominant approaches based on normalcy. This work stresses that the focus in developmental theory must be shifted from measuring the gap between age and expected developmental achievements and measuring the standard deviations of that gap to focusing on the conditions that enable children and adults with disabilities to carry out “developmental tasks” that are culturally shared and defined. To be able to communicate with

Changing Perspectives “norms” of development, but these norms remain achievement need not be measured by verbal lanjust that—statistical constructions. Deviations from guage skills in the dominant language. Moving into the norms do not signify “abnormal” development; adulthood need not be defined by the capacity for they merely represent statistical deviations from a independence, which would exclude from successpresumed norm. In this view, if children, youth, or ful adult achievement those who require ongoing adults do not proceed developmentally through a personal supports. It can also be defined by the conset of common functions, developmental stages, or trol one is given over one’s supports; development of critical developmental periods, then they are to be mutually supportive, interdependent relationships; considered abnormal or to have deviations in physi-and the opportunity to develop and pursue a wider

considered abnormal or to have deviations in physi-and the opportunity to develop and pursue a wider cal, emotional, or skill development. This assump-range of goals. tion, which has served to frame much of the practice The WHO definition, its antecedents, and its in education, developmental psychology, and social contemporaries all placed disability firmly within science research, is increasingly being called into the individual while recognizing that it often brings question (Amundson, 2000; Skrtic, 1991). It has been needs for support from others and social stigma for suggested that rather than being scientific and objec-not measuring up to the norm. This is also the case

not measuring up to the norm. This is also the case with the AAIDD definition, which recognizes that beliefs, preferences, and cultural expectations of a In defining and assessing intellectual disability… majority of the members of society. As Amundson additional factors must be taken into account, such suggested, if what it means to be normal is indeed as the community environment typical of the individual’s peers and culture. Professionals should a product of the culture, then the yardsticks for also consider linguistic diversity and cultural difmeasuring normalcy lack universal and scientific ferences in the way people communicate, move, and

chances. A social and human rights perspective on mental achievements and measuring the standard developmental disability can help to shed this light. deviations of that gap to focusing on the conditions

measuring normalcy lack universal and scientific ferences in the way people communicate, move, and validity, and “disadvantages experienced by people behave. (2013, p. 1) assessed as abnormal derive not from biology, but A biomedical view of disability is not inherently from implicit social judgments about the acceptabilharming to people with intellectual or developmenity of certain kinds of biological variation” (p. 33). tal disabilities. It can provide an understanding of The definition of normal becomes arbitrary, relaa person’s genetic differences and possible consetive, and specific to the historical context in which it quences. It can provide information (e.g., through a diagnosis) at an early stage of a person’s life about A critique of normalcy does not suggest that the particular challenges to be faced in communicaparticular individuals do not have real limitations tion, motor, and behavioral development, and thus it and difficulties or face barriers as a result or that can encourage access to early intervention programs they do not require early intervention to help remeand other developmental supports. Such informadiate limitations or address diseases and ill health. It tion is vital to a child and to his or her family seeking simply means that each person must be considered

diate limitations or address diseases and ill health. It tion is vital to a child and to his or her family seeking simply means that each person must be considered to nurture as many life chances as possible. as a unique person. A person’s developmental prog- The “harm” in a biomedical perspective comes ress will proceed like no other person’s, even though from using it as the only way of viewing a person. at a population level, trends in development can be This often leads to the assumption that all the chalfound across children and subgroups of children. lenges to be faced arise from genetic or other differ- Mackelprang and Salsgiver (1999) pointed to ences. In order to address the challenges that arise some of the intellectual foundations of a broader from a devalued legal and social status, a broader view of developmental theory that begin to address perspective for viewing a person is needed—one the cultural biases of predominant approaches that sheds light on how the legal system and ecobased on normalcy. This work stresses that the focus nomic, social, educational, and other environments in developmental theory must be shifted from meain which a person lives can determine his or her life suring the gap between age and expected developchances. A social and human rights perspective on mental achievements and measuring the standard

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

40 model—has been advanced by those who find in the WHO and other definitions a “reductionist” tendency—reducing the disability to individual characteristics (Barnes, 1991; Oliver, 1996; Pothier & Devlin, 2006; Rioux, 1996; Rioux, Basser, & Jones, 2011). In a social model, disability arises from the discrimination and disadvantage individuals experience in relation to others because of their particular differences and characteristics. This shift in thinking finds a primary source in feminist and other identity theories of “difference” wherein the challenge is to recognize such differences as gender, race, sexual identity, and disability without assigning social or economic value on the basis of these differences (Carlson, 2010;

ities (see, e.g., Davis, 2010; Hosking, 2008; Meekosha & Shuttleworth, 2009; Pothier & Devlin, 2006). The social model, in today’s context, embraces human rights as a key method for society to assume its responsibility to ensure equal treatment and opportunities for all of its citizens (Rioux, Pinto, & Parekh, 2015). This reintroduces the notion of people with disabilities as legal entities described at the beginning of this chapter but stresses equality and citizenship rights in a way that brings into question the status that was first carved out for them under statutes such as De Prerogativa Regis and also questions the forms of institutional and community care that have taken away their basic rights to self-determination, citizenship, and freedom from discrimination in employment. Instead, the social model suggests a reconstruction of the legal, social, and economic status of people with disabilities, starting with recognition that, first and foremost, people are full, rights-bearing citizens. The purpose of this

Bach model—has been advanced by those who find in the ensure that opportunities to a full life are protected WHO and other definitions a “reductionist” ten-and enhanced and that these will be appropriate to dency—reducing the disability to individual charac-capabilities of people with all disabilities (Brown,

dency—reducing the disability to individual charac-capabilities of people with all disabilities (Brown, teristics (Barnes, 1991; Oliver, 1996; Pothier & Devlin, Hatton, & Emerson, 2013). 2006; Rioux, 1996; Rioux, Basser, & Jones, 2011). In In a social model of disability, the “pathology,” a social model, disability arises from the discrimi-to use Rioux’s (1996) terminology, is not individual, nation and disadvantage individuals experience in but rather social in nature. The unit of analysis shifts relation to others because of their particular differ-from the individual to the legal, social, economic, ences and characteristics. This shift in thinking finds and political structures that calculate value and staa primary source in feminist and other identity theo-tus on the basis of difference. Informed by principles ries of “difference” wherein the challenge is to recog-of human rights and an equality of outcomes that nize such differences as gender, race, sexual identity, takes account of differences, the social model does and disability without assigning social or economic not reject biomedical knowledge of impairments value on the basis of these differences (Carlson, 2010; and research on individual rehabilitation. Rather, it celebrates impairment as part of the human condi- A parallel and closely related body of theory tion and looks at achieving equity for people with in disability, critical disability theory, contends impairments in terms of the social, cultural, and

A parallel and closely related body of theory tion and looks at achieving equity for people with in disability, critical disability theory, contends impairments in terms of the social, cultural, and that past and current conceptualizations of disabil-political contexts (Goodley, 2011). ity and their accompanying policies and practices There remains some question about the place of have been both discriminatory and oppressive, and “impairment” within the social and human rights that redress is necessary through overt action that model of disability. In the response of Disabled Peoseeks to situate disability in a full and value-neutral ples’ International (DPI) to the WHO definition, the way within the human condition. Critical disability term handicap was dropped, but “impairment” and theory’s value-based approach, which identifies and “functional limitation” were kept as the foundation brings into focus past and current harm from social, of the definition (DPI, 1982). Oliver (1996) suggested cultural, and political relationships, and emphasizes that this emphasis reinforces normalizing tendenthe need to redress this harm, lends a call to action to cies within the definition that need to be questioned. the social model that is helpful to society assuming In keeping with Oliver’s view, Shakespeare (1996) its responsibility for providing in an equitable way suggested that only by turning to the stories and for all of its citizens, including those with all disabil-experience of people with disabilities themselves ities (see, e.g., Davis, 2010; Hosking, 2008; Meekosha can a legitimate place be given to their lived realities of impairment as the meaning they give to their The social model, in today’s context, embraces physical and intellectual differences. He also called human rights as a key method for society to assume for recognition that with impairments can come its responsibility to ensure equal treatment and “intrinsic limitations” (Shakespeare, 2006, p. 41), opportunities for all of its citizens (Rioux, Pinto, & a reality that must be figured into understand- Parekh, 2015). This reintroduces the notion of peo-ing the disadvantage people with disabilities face. ple with disabilities as legal entities described at the Thomas (2004) continued this thread in her outline beginning of this chapter but stresses equality and of a “social relational model” of disability, which citizenship rights in a way that brings into question recognizes that physical or cognitive impairments the status that was first carved out for them under can have real effects and limitations in a person’s statutes such as De Prerogativa Regis and also ques-life. These approaches acknowledge the reality of tions the forms of institutional and community care impairment while challenging the assumption that that have taken away their basic rights to self-deter-one person is given the status to define another as mination, citizenship, and freedom from discrimi-“impaired” from some “objective” criteria of “nornation in employment. Instead, the social model mal” functioning. It is argued that by their very suggests a reconstruction of the legal, social, and nature, such assessments reinforce a norm at the economic status of people with disabilities, start-same time as they define someone as deficient in ing with recognition that, first and foremost, people relation to the norm. Rather, impairment is a lived are full, rights-bearing citizens. The purpose of this and subjective reality, given meaning within the

Changing Perspectives

Changing Perspectives people with disabilities themselves and those who are in personal relationships with them. Frazee (1997) has stressed the importance of creating a “culture” of disability wherein people’s differences, or impairments if they define them as such, can be named, given meaning, celebrated, and thereby transformed into a cultural and personal resource, even while people may experience limitations and

transformed into a cultural and personal resource, even while people may experience limitations and needs for support. The notions of a “social model of disability,” “personal experience of impairment,” and a “culture of disability” may not at first glance provide much hope of liberation to people with more profound intellectual and developmental disabilities, and indeed there has not been nearly as much attention in critical disability studies to the lived realities of this group. Many who are labeled with an intellectual or developmental disability have very challenging needs, are unable to communicate in ways that most others understand, sometimes act in ways that bring alarm to others, and sometimes demand attention from family and support workers. Those who advocate a social rather than biomedical perspective for understanding disability argue that it is most important to bring this perspective to individuals who are in such a situation. It is they whose voices about their own lives and life conditions are least likely to be heard but need to be for an understanding of disability (see Charlton, 1998, 2010; Couser, 1997, 2010). It is they who are most at risk of being devalued in society for their differences, who are defined as furthest from the norm, and who are perceived to be lacking a personal story or narrative that others value. As Eva Kittay—a philosopher who has a daughter with a profound intellectual disability—argued, the differences people with intellectual and developmental disabilities have in relation to others cannot be defined away as “social constructions.” These differences are real. It is the defining of

tions.” These differences are real. It is the defining of them as “problems” that must be addressed: The cognitive impairments of the severely and profoundly retarded are not merely contingently disabling. Unlike many disabilities, Sesha’s [her daughter’s] are not simply social constructions. Someone such as my daughter could not survive, much less thrive, without constant vigilant attention.…We might say, however, that in the case of developmental disabilities, especially severe ones, though the disability itself is not socially constructed, the view that mental retardation is a “problem” rather than a possible outcome of human

Changing Perspectives people with disabilities themselves and those who CHALLENGES IN MOVING

people with disabilities themselves and those who CHALLENGES IN MOVING are in personal relationships with them. Frazee A SOCIAL MODEL INTO REALITY (1997) has stressed the importance of creating a How can a social and human rights model best “culture” of disability wherein people’s differences, be moved into law, policy, and practice in a way or impairments if they define them as such, can be that makes a practical difference in addressing the named, given meaning, celebrated, and thereby inequalities and disadvantages experienced by peotransformed into a cultural and personal resource, ple with intellectual and developmental disabilities? even while people may experience limitations and How can that be done in a way that also recognizes that the term intellectual disability does not signify a The notions of a “social model of disability,” homogenous group and is but one of the identities “personal experience of impairment,” and a “cul- (although often the dominant one) that people live ture of disability” may not at first glance provide with at the intersection with their gender, ethnomuch hope of liberation to people with more proracial-cultural identity, sexual orientation, and other found intellectual and developmental disabilities, identities—the intersections that the “radical” model and indeed there has not been nearly as much attencalls upon everyone to recognize (Withers, 2012)? tion in critical disability studies to the lived reali- Through the 1980s and 1990s, much was accomties of this group. Many who are labeled with an plished in codifying in law human rights protecintellectual or developmental disability have very tions for people with disabilities and prohibitions challenging needs, are unable to communicate in against discrimination on this basis. In 2006, the ways that most others understand, sometimes act United Nations’ Convention on the Rights of Persons in ways that bring alarm to others, and sometimes with Disabilities (United Nations, 2006) established demand attention from family and support workers. a comprehensive human rights standard to guide Those who advocate a social rather than biomedistates (countries) in developing their own human cal perspective for understanding disability argue rights and to provide a basis for global monitoring that it is most important to bring this perspective of human rights and disability. The dilemma now is to individuals who are in such a situation. It is they

that it is most important to bring this perspective of human rights and disability. The dilemma now is to individuals who are in such a situation. It is they how to put those commitments into reality. whose voices about their own lives and life condi- Although human rights laws have advanced, tions are least likely to be heard but need to be for an not as much has changed in the lives of people with understanding of disability (see Charlton, 1998, 2010; disabilities in terms of poverty rates, unemploy- Couser, 1997, 2010). It is they who are most at risk of ment, exclusion from regular education, exclusion being devalued in society for their differences, who from community activities, exclusion from housing, are defined as furthest from the norm, and who are and rates of abuse (especially neglect; see Chapter perceived to be lacking a personal story or narrative 35). Moreover, the inequities affecting people with that others value. As Eva Kittay—a philosopher who disabilities within countries and between countries has a daughter with a profound intellectual disabilgrow. The WHO, for example, estimates a far lower ity—argued, the differences people with intellectual participation rate of children with disabilities than and developmental disabilities have in relation to children without disabilities in primary and secothers cannot be defined away as “social construcondary education (WHO, 2011). In the more affluent tions.” These differences are real. It is the defining of countries of the world, where children with disabilities are required to go to school, it is still challenging The cognitive impairments of the severely and to move from a segregated to an inclusive approach, profoundly retarded are not merely contingently as the social model would require.

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

42 and knowledge required in these sectors to make full inclusion a reality is often missing. Closing the gap between exclusion and inclusion will require new roles and partnerships, including actors who for many years advocated for legal change working alongside service providers and people with disabilities themselves. For example, more individualized and person-centered planning, funding, and support services are essential if people with intellectual and developmental disabilities are going to be supported to maximize achievement, contribution, success, and belonging, each person along his or her unique developmental path. However, funding arrangements and service delivery systems in education, residential, employment, and community supports still largely foreclose this possibility because of their emphasis on congregate and often segregated approaches. Systems are beginning to change as individualized and person-directed approaches are tested and increasingly adopted (Kendrick, 2011). Nonetheless, the limits of reform will depend on the extent to which a fuller transformation can be made from the predominant biomedical view of disability to a social or

mental possibilities. IMPORTANCE OF A

dominant biomedical view of disability to a social or human rights approach and even more radical views. In addition, recognition will be required that people with intellectual and developmental disabilities are not a homogenous group. They are located simultaneously in gendered, racialized, and culturally defined roles and relationships that also structure the limits and possibilities of reform at any point in time and place. For a social and human rights model of disability to take full account of the realities of people with intellectual and developmental disabilities, it must also attend to this more radical perspective on the multiple, sometimes conflictual, and always evolving nature of social identities. This perspective helps people to better understand the double and triple disadvantage some individuals face and also to identify opportunities to build common understanding and solidarity with groups who share forms of social and economic exclusion. These alliances can help to further unsettle the hold that negative and devaluing constructions of intellectual disability have held over people’s lives and develop-

Bach and knowledge required in these sectors to make historical roots makes clear that there are different full inclusion a reality is often missing. Closing the ways of making sense of the terms intellectual disabiligap between exclusion and inclusion will require ties and developmental disabilities. Since the late 20th new roles and partnerships, including actors who century, a broad perspective has begun to take shape for many years advocated for legal change working that goes significantly beyond delineating norms to alongside service providers and people with disabil-guide the assessment of disability (e.g., intelligence, ities themselves. For example, more individualized adaptive behaviors, social competencies, genetic and person-centered planning, funding, and support structure), focusing instead on what needs to be services are essential if people with intellectual and done so that people, whatever their personal chaldevelopmental disabilities are going to be supported lenges and social and economic disadvantage, can

services are essential if people with intellectual and done so that people, whatever their personal chaldevelopmental disabilities are going to be supported lenges and social and economic disadvantage, can to maximize achievement, contribution, success, and exercise their human rights and full citizenship. belonging, each person along his or her unique devel-The discourse of human rights has not yet opmental path. However, funding arrangements and influenced thinking in the area of intellectual and service delivery systems in education, residential, developmental disability as much as it has in other employment, and community supports still largely areas, such as gender, race, sexual identity, or physiforeclose this possibility because of their emphasis cal disability (Carlson, 2010). Nonetheless, with on congregate and often segregated approaches. Sys-the recognition that the label has brought with it a tems are beginning to change as individualized and devalued legal, social, and economic status, a human person-directed approaches are tested and increas-rights framework now has an irrevocable impact on ingly adopted (Kendrick, 2011). Nonetheless, the understanding intellectual and developmental dislimits of reform will depend on the extent to which ability. Since 1948, when the Universal Declaration of a fuller transformation can be made from the pre-Human Rights was adopted, and more recently with dominant biomedical view of disability to a social or the United Nations Convention on the Rights of Perhuman rights approach and even more radical views. sons with Disabilities, human rights provisions have In addition, recognition will be required that been successively passed by national and state or people with intellectual and developmental dis-provincial governments. The implications of these abilities are not a homogenous group. They are changes are being witnessed in the reform of federal located simultaneously in gendered, racialized, and and regional statutes—for the right to vote, the right culturally defined roles and relationships that also to participate on juries, the right to have access to

located simultaneously in gendered, racialized, and and regional statutes—for the right to vote, the right culturally defined roles and relationships that also to participate on juries, the right to have access to structure the limits and possibilities of reform at health care, the right to education, and other rights. any point in time and place. For a social and human The adoption of a human rights perspective rights model of disability to take full account of the for understanding state obligations to its citizens realities of people with intellectual and developmen-is arguably the most profound conceptual advance tal disabilities, it must also attend to this more radical for understanding intellectual and developmental perspective on the multiple, sometimes conflictual, disability since the terminology was first born in and always evolving nature of social identities. This law hundreds of years ago. Human rights proviperspective helps people to better understand the sions have become indispensable foundations for a double and triple disadvantage some individuals social model of disability and indeed have helped face and also to identify opportunities to build com-make a social model perspective on disability posmon understanding and solidarity with groups who sible in law, policy, and practice. They are a crucial share forms of social and economic exclusion. These instrument in challenging the discrimination and alliances can help to further unsettle the hold that inequality that arises from assigning people with negative and devaluing constructions of intellectual intellectual and developmental disabilities differendisability have held over people’s lives and develop-tial and devalued legal, social, and economic status on the basis of assessed, or assumed, intellectual

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

Changing Perspectives and the biomedical consequences and challenges they bring. A social model recognizes a biomedical view as one source of information for understanding disability. However, it changes the vision and purpose of intervention from “fixing,” “impairments,” and “abnormalities” to supporting people to exercise their human rights and thereby become full and val-

and “abnormalities” to supporting people to exercise their human rights and thereby become full and valued members of society. Although the implications of human rights obligations are still to be fully worked out, the vantage point they allow helps to reveal the inequalities in status between people with disabilities and the rest of the population and among people with disabilities themselves. They provide a legitimate ground on which to restructure the institutions and policies that have brought inequality in the past and to consider what entitlements people require in order to fully exercise their citizenship and equality rights. They also demand a restructuring of outmoded approaches to service delivery that still congregate and segregate people on the basis of intellectual and developmental disabilities. As understandings of these inequalities in status inch further and further into public consciousness, it can be hoped that genetic, behavioral, communicational, and intellectual differences will be seen for what they are—signs of diversity, horizons of human possibility, and a

place to nurture support, belonging, and reciprocity.

SUMMARY Intellectual and developmental disability is usually thought of as an intellectual deficit or developmental delay arising from a genetic “deficiency” or other condition, which becomes visible in the early years of life. Stepping back from this assumed definition, it can be seen that disability is, first and foremost, a term applied by some people to others. The term is rooted in legal distinctions that go back hundreds of years to a time when the state first became concerned with distinguishing those considered to have the requisite “reason” to manage property and

Changing Perspectives and the biomedical consequences and challenges and “delays.” It aims to shed light on the social, they bring. A social model recognizes a biomedical economic, and political barriers to full citizenship view as one source of information for understanding that come when a person is labeled as intellectually

they bring. A social model recognizes a biomedical economic, and political barriers to full citizenship view as one source of information for understanding that come when a person is labeled as intellectually disability. However, it changes the vision and pur-“delayed” or “disabled.” pose of intervention from “fixing,” “impairments,” The legal, biomedical, and social perspectives and “abnormalities” to supporting people to exercise on disability all underlie public policies for people their human rights and thereby become full and val-with intellectual and developmental disabilities. There has been a gradual shift in public policy from Although the implications of human rights obli-“care” for people with disabilities to policies that gations are still to be fully worked out, the vantage enable greater social and economic inclusion of such point they allow helps to reveal the inequalities in people. However, concerns are growing that there status between people with disabilities and the rest is a “re-medicalization” of disability underway that of the population and among people with disabili-will be used to distinguish between those who are ties themselves. They provide a legitimate ground deemed worthy of public support and those who on which to restructure the institutions and poli-are not. With human rights commitments now in cies that have brought inequality in the past and to place, the next step is to develop the knowledge consider what entitlements people require in order needed for all sectors of society to build inclusive to fully exercise their citizenship and equality rights. policies and practices that enable people with intel- They also demand a restructuring of outmoded lectual and developmental disabilities to take their

and segregate people on the basis of intellectual and developmental disabilities. As understandings of these inequalities in status inch further and fur- FOR FURTHER

FOR FURTHER ther into public consciousness, it can be hoped that THOUGHT AND DISCUSSION genetic, behavioral, communicational, and intellectual differences will be seen for what they are—signs 1. Why do you think it is that a person with a disability has a right to health care and medical interof diversity, horizons of human possibility, and a ventions in many countries (even if this right is place to nurture support, belonging, and reciprocity. not always fulfilled) but can only obtain disability-

place to nurture support, belonging, and reciprocity. not always fulfilled) but can only obtain disabilityrelated supports as a matter of charity? 2. What arguments would you use to encourage a potential employer who would like to hire a Intellectual and developmental disability is usually person with a disability but who is concerned thought of as an intellectual deficit or developmental about the functional and behavioral assessments delay arising from a genetic “deficiency” or other

rooted in legal distinctions that go back hundreds turns to you for advice on whether she should of years to a time when the state first became conabort her fetus. How do you counsel her? cerned with distinguishing those considered to 4. Children have a right to education. However, some have the requisite “reason” to manage property and are excluded from attending their neighborhood school because they do not have the communica- The biomedical view, in which intellectual and tion capacities or the needed augmentative comdevelopmental disability tends to be seen primar-munication systems are considered too expensive ily as a delay in normal human development, arose or cumbersome in the classroom. Should education as the medical profession was increasingly called be a matter of right or of capacity? Can functional upon to determine to whom the category would be and other biomedical assessments be used to help applied. A social and human rights model of disabil-a child and a school to more fully exercise the right ity has more recently emerged to question the exclu-to education? In what ways might they undermine

thought of as an intellectual deficit or developmental about the functional and behavioral assessments delay arising from a genetic “deficiency” or other provided by a vocational counselor? condition, which becomes visible in the early years 3. You are supporting a young person with a develof life. Stepping back from this assumed definition, opmental disability and her parents. The mother it can be seen that disability is, first and foremost, a is 3 months pregnant and finds out that her secterm applied by some people to others. The term is ond child will have Down syndrome. The mother rooted in legal distinctions that go back hundreds turns to you for advice on whether she should

Excerpted from A Comprehensive Guide to Intellectual and Developmental edited by Michael

44 5. What is the difference between a physician’s knowledge about the human rights of a person with a disability, knowledge about how to provide medical care to a person with an intellectual disability, and knowledge about how to ensure that a person with an intellectual disability can have access to the physician’s office and be supported

to make health care decisions?

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