Haggerty Papers: The “r-word”

Considering the recent amendment to Pennsylvania Senate Bill no. 458, I thought I would take the time to discuss part of the Dennis Haggerty papers that reflects on definitions of intellectual disability.  Pennsylvania Senate Bill no. 458 changed the Mental Health and Mental Retardation Act to the Mental Health and Intellectual Disability Act.  It also changed the text of the Act’s use of “mental retardation” to “intellectual disability.”  This amendment is part of a larger program to eliminate the derogatory use of the word “retardation,” or the “r-word.”

The current use of the r-word is both derogatory and exclusionary, and although the word was acceptable during Dennis Haggerty’s time, there were concerns about words being exclusionary, such as the meaning of developmental disabilities.  Dennis Haggerty was involved in redefining the meaning of “developmental disabilities” through his involvement with the National Task Force for the Definition of Developmental Disabilities (NTF DDD).

In the late 1970s, Dennis Haggerty and a number of other colleagues began working on the new definition of developmental disabilities.  The Developmentally Disabled Assistance and Bill of Rights Act of 1975 required a report to Congress on the definition of developmental disabilities and it was here that Abt Associates received the contract to work on the task from the Developmental Disabilities Office of the Department of Health, Education and Welfare.  The purpose of the NTF DDD was to create a unified definition of developmental disabilities for states and organizations to abide to and help in the formation of uniform services.  Elinor Gollay was the project director for this report and the NTF DDD was comprised of many notable individuals including Gunnar Dybwad, Elizabeth Boggs, and Dennis Haggerty.

What makes the records of Dennis Haggerty’s involvement with the NTF DDD interesting is the process used by the group to form the definition as well as the variety of opinions expressed in the creation of the definition.  The NTF DDD solicited numerous organizations and individuals about their thoughts on a definition of developmental disabilities.  The NTF DDDD sent a chart to these individuals and organizations that offered examples and suggested the options for the definitions.  Some used the chart, but other sent their state’s definition or wrote their own definition.  Organizations such as the Mayo Clinic and the New York Association for the Retarded all weighed in on the definition of developmental disabilities and each definition varied.

One of the most prominent disagreements in the definition was whether it should be defined categorically or functionally.  Individuals who wanted the definition to be categorical extended the definition of the developmentally disabled to include epilepsy, autism, or cerebral palsy, and others wanted to include spina bifida and muscular dystrophy, blindness and deafness, dyslexia, and birth defects.  Each organization had different reasons for the categorical definition or the functional definition.   The Epilepsy Foundation found that when it was part of the categorical definition of developmental disabilities, services increased for the foundation and individuals.  Others groups, such as the National Association for Private Residential facilities for the Mentally Retarded, felt categorical definitions limited services and was unfavorable to individuals not in listed categories.  Other arguments against a functional definition included that it may make the definition too broad to be effective.  Proponents against categorical labeling argued that it created programs developed around a category rather than an individual.

Overall, the main concern of what to include or not include in the definition of developmental disabilities affected which individuals would be excluded or included, much like how the r-word affects how individuals are excluded today.   The various opinions expressed in the redefining of developmental disabilities are documented in the Dennis Haggerty papers through correspondence, newsletters, reports, minutes, and memoranda of the National Task Force on the Definition of Developmental Disabilities.

Megan Atkinson
Archivist, Haggerty Papers

Subjects:

  • r-word
  • Developmentally Disabled Assistance and Bill of Rights Act of 1975
  • Gollay, Elinor
  • Haggerty, Dennis
  • National Task Force for the Definition of Developmental Disabilities
  • Mental Health and Mental Retardation Act of 1966
  • Mental Health and Intellectual Disability Act
  • Developmental Disability
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