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Lives and legacies of people with intellectual disability

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View the page of Kenneth Keith

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Kenneth Keith provides a new way to view the personal and cultural contributions of people with intellectual disability.

Image courtesy of interviewee. August 21, 2024

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In a conversation recorded on August 20th, Ken discusses his experiences and insights regarding individuals with intellectual disabilities (ID). He shares his personal history, having grown up near a facility for people with intellectual disabilities where he interacted with them and later worked during his studies. His book, co-authored with his daughter, addresses the neglect and abuse many individuals with ID face, stemming from a long history of dehumanization.

Ken defines intellectual disability traditionally as subaverage intellectual capacity accompanied by impaired life skills, manifesting before the age of 18. However, he advocates for viewing it as a social construction, emphasizing the interaction between individuals and their environments. This video perspective highlights the need for supportive environments that help bridge the gap between personal abilities and community needs.

He mentions the evolving "supports model" in literature, emphasizing that creating an accommodating environment can lead to improved quality of life for people with ID. Ken calls for enhanced community services and integration within existing community frameworks to ensure meaningful participation for individuals with ID.

Looking ahead, he stresses the importance of research focused on enhancing quality of life, not just by describing it but by identifying effective supports that contribute to a new moral community. Ultimately, he wishes for readers to recognize that people with intellectual disabilities can lead meaningful lives and make valuable contributions to their families and communities, underscoring their legacies should be acknowledged like anyone else's.

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X-TIMESTAMP-MAP:LOCAL=00:00:00.000,MPEGTS=900000

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As a child, I lived,

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near a large facility serving people

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with intellectual disability, so I've always known people

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with intellectual disability.

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My grandfather was a painter at that facility,

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and I would sometimes stop in

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after work with my grandmother to see him at the paint shop,

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and, and I would see men working there

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with intellectual disability,

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and they were always kind to me, invited me

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to play horseshoes and things of that sort.

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Uh, but then later when I, was a student, I returned to

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that facility and worked there summers

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and later, of course became a psychologist.

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And over the years did consulting work

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and other kinds of projects with, agencies serving

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and people with intellectual disabilities.

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So both long and short term motivations.

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Uh, and over those years, both my daughter,

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who is my co-author for the book,

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and I saw people with intellectual disability in situations

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of neglect and abuse.

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And of course, we have a long history of dehumanization

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of these people, not just in the United States,

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but in other cultures as well.

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Did several kinds of things.

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We actually interviewed, quite a number of people

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with intellectual disability

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with whom we became acquainted in our communities.

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We also, draw Drew on our own experience,

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to tell stories about people.

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We had known people with whom we had worked

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and we reviewed, literature fairly extensively,

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not just in intellectual disability,

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but in the more specialized area of, death

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and dying, of people with intellectual disability.

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Although our book is not about that, we wanted

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to have some acquaintance with that.

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It's one of the, groups of disability known

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as developmental disabilities.

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It essentially has traditionally meant, sub average

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intellectual or iq, capacity in conjunction

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with impaired life skills

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and presenting prior to the age of 18,

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hence the term developmental disability.

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Uh, on the other hand, we think that

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that's a rather limiting view of intellectual disability.

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We came to believe that it would be more productive to think

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of intellectual disability in terms

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of a social construction, the, interplay

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between the person and environment.

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The traditional definitions have essentially focused on

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characteristics of the person, often biological,

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genetic, neurological.

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And the assumption has been

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that these are fixed traits of the person.

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Uh, we think that it's a more humane

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and more productive point of view to think

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of intellectual disability as a social construction.

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Uh, the connection between person

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and environment that is, malleable.

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Uh, depending upon the context, depending upon

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how the re environment responds to people

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with intellectual disability, we think it has

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Prospect to create what we like

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to call a new moral community.

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Uh, the idea that environment can support people in ways

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that, focus on their traits may not.

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Uh, we think of, the notion

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of a supportive environment in terms of, being able

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to bridge the gap between personal traits

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and characteristics of the environment.

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And if the environment is responsive in, in sufficient ways,

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individuals can behave in much more normal ways.

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There's an evolving literature in the last, decade

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or so, in what's called the supports model.

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And this is the idea that,

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I was just discussing the idea that environment should serve

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to respond to individual needs in a way that

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that bridges the gaps between what a person can

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and cannot do, in their environment, whether

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that's family, community, school, workplace.

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Uh, so we could, for example, perhaps think of a person who

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is unable to live independently because he

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or she is unable to cook.

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Uh, there are lots of ways to solve that problem.

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The person could live with a roommate who can cook.

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The person could be supplied with packaged meals.

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The person could be taught to use a microwave oven.

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Uh, any variety of ways, could overcome

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that if we're sufficiently creative to provide the supports,

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to bridge that gap.

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There are a variety of ways to do that.

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Uh, one is of course to have improved community services.

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Uh, another is to improve access to, normal

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existing community services.

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And I'm, I'm the distinction I'm making there.

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And when the former would be

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agencies in the community dedicated

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to providing services and supports.

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Uh, the second would be, what we would call normal

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community activities and institutions

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and agencies that ought to be, more integrative

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and that ought to be more open and accepting

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and supportive of people with intellectual disability.

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I spent much of my career doing quality of life research

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for people with intellectual disability,

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and I'd like to see that research continue,

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but with a particular eye, not just to describing quality

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of life, but to, improving our research to be able

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to more effectively prescribe, the kinds of supports,

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the kinds of community and social services

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and supports that, that, we think are important to

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what we calling a new moral community.

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Perhaps the most important message is that people

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with intellectual disability, like everyone,

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can live meaningful lives.

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They are important contributors to their families

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and their communities,

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and we want their legacies to be recognized in the way

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that we recognize the legacies of any family member

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or any important member of the community.

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