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Lives and legacies of people with intellectual disability

View more insights in Social Sciences - Psychology - Developmental Psychology

View more figures from University of San Diego

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

00:00.105 --> 00:01.605
As a child, I lived,

00:01.875 --> 00:04.245
near a large facility serving people

00:04.245 --> 00:07.925
with intellectual disability, so I've always known people

00:07.925 --> 00:09.205
with intellectual disability.

00:09.305 --> 00:11.365
My grandfather was a painter at that facility,

00:11.425 --> 00:12.965
and I would sometimes stop in

00:12.965 --> 00:16.605
after work with my grandmother to see him at the paint shop,

00:16.665 --> 00:18.685
and, and I would see men working there

00:18.685 --> 00:20.245
with intellectual disability,

00:20.265 --> 00:22.765
and they were always kind to me, invited me

00:22.765 --> 00:24.685
to play horseshoes and things of that sort.

00:25.305 --> 00:30.125
Uh, but then later when I, was a student, I returned to

00:30.125 --> 00:32.125
that facility and worked there summers

00:33.065 --> 00:35.085
and later, of course became a psychologist.

00:35.085 --> 00:37.325
And over the years did consulting work

00:37.325 --> 00:41.445
and other kinds of projects with, agencies serving

00:41.545 --> 00:43.365
and people with intellectual disabilities.

00:43.385 --> 00:47.085
So both long and short term motivations.

00:47.225 --> 00:50.565
Uh, and over those years, both my daughter,

00:50.625 --> 00:52.085
who is my co-author for the book,

00:52.145 --> 00:56.525
and I saw people with intellectual disability in situations

00:56.685 --> 00:57.965
of neglect and abuse.

00:58.065 --> 01:01.805
And of course, we have a long history of dehumanization

01:01.825 --> 01:04.045
of these people, not just in the United States,

01:04.185 --> 01:06.045
but in other cultures as well.

01:06.345 --> 01:07.525
Did several kinds of things.

01:07.705 --> 01:10.445
We actually interviewed, quite a number of people

01:10.475 --> 01:11.885
with intellectual disability

01:12.475 --> 01:15.405
with whom we became acquainted in our communities.

01:16.265 --> 01:19.885
We also, draw Drew on our own experience,

01:20.225 --> 01:21.845
to tell stories about people.

01:21.905 --> 01:24.645
We had known people with whom we had worked

01:25.345 --> 01:28.045
and we reviewed, literature fairly extensively,

01:28.145 --> 01:29.645
not just in intellectual disability,

01:29.705 --> 01:33.645
but in the more specialized area of, death

01:33.745 --> 01:37.325
and dying, of people with intellectual disability.

01:37.645 --> 01:40.165
Although our book is not about that, we wanted

01:40.165 --> 01:41.765
to have some acquaintance with that.

01:42.115 --> 01:45.285
It's one of the, groups of disability known

01:45.285 --> 01:46.805
as developmental disabilities.

01:47.585 --> 01:51.885
It essentially has traditionally meant, sub average

01:52.405 --> 01:57.205
intellectual or iq, capacity in conjunction

01:57.315 --> 01:59.165
with impaired life skills

02:00.105 --> 02:02.645
and presenting prior to the age of 18,

02:02.935 --> 02:05.045
hence the term developmental disability.

02:05.985 --> 02:07.765
Uh, on the other hand, we think that

02:07.765 --> 02:11.205
that's a rather limiting view of intellectual disability.

02:11.425 --> 02:15.285
We came to believe that it would be more productive to think

02:15.285 --> 02:17.685
of intellectual disability in terms

02:17.685 --> 02:21.085
of a social construction, the, interplay

02:21.085 --> 02:22.805
between the person and environment.

02:22.905 --> 02:26.885
The traditional definitions have essentially focused on

02:27.385 --> 02:31.525
characteristics of the person, often biological,

02:31.525 --> 02:33.085
genetic, neurological.

02:34.225 --> 02:35.485
And the assumption has been

02:35.485 --> 02:37.365
that these are fixed traits of the person.

02:38.025 --> 02:40.445
Uh, we think that it's a more humane

02:40.465 --> 02:43.005
and more productive point of view to think

02:43.005 --> 02:45.645
of intellectual disability as a social construction.

02:46.305 --> 02:48.085
Uh, the connection between person

02:48.145 --> 02:51.325
and environment that is, malleable.

02:51.545 --> 02:54.165
Uh, depending upon the context, depending upon

02:54.265 --> 02:56.685
how the re environment responds to people

02:56.685 --> 02:58.845
with intellectual disability, we think it has

02:59.245 --> 03:01.205
Prospect to create what we like

03:01.205 --> 03:02.725
to call a new moral community.

03:03.265 --> 03:07.965
Uh, the idea that environment can support people in ways

03:08.075 --> 03:11.405
that, focus on their traits may not.

03:12.025 --> 03:14.925
Uh, we think of, the notion

03:14.925 --> 03:18.205
of a supportive environment in terms of, being able

03:18.205 --> 03:20.485
to bridge the gap between personal traits

03:21.025 --> 03:23.085
and characteristics of the environment.

03:23.385 --> 03:26.285
And if the environment is responsive in, in sufficient ways,

03:26.795 --> 03:29.485
individuals can behave in much more normal ways.

03:29.595 --> 03:32.685
There's an evolving literature in the last, decade

03:32.905 --> 03:35.925
or so, in what's called the supports model.

03:36.545 --> 03:38.645
And this is the idea that,

03:39.165 --> 03:43.005
I was just discussing the idea that environment should serve

03:43.105 --> 03:45.765
to respond to individual needs in a way that

03:45.955 --> 03:49.165
that bridges the gaps between what a person can

03:49.225 --> 03:52.525
and cannot do, in their environment, whether

03:52.525 --> 03:56.085
that's family, community, school, workplace.

03:57.105 --> 04:01.685
Uh, so we could, for example, perhaps think of a person who

04:02.385 --> 04:05.005
is unable to live independently because he

04:05.005 --> 04:07.005
or she is unable to cook.

04:08.365 --> 04:11.575
Uh, there are lots of ways to solve that problem.

04:12.315 --> 04:14.535
The person could live with a roommate who can cook.

04:14.635 --> 04:17.455
The person could be supplied with packaged meals.

04:17.635 --> 04:19.935
The person could be taught to use a microwave oven.

04:20.515 --> 04:23.575
Uh, any variety of ways, could overcome

04:23.575 --> 04:27.255
that if we're sufficiently creative to provide the supports,

04:27.635 --> 04:28.975
to bridge that gap.

04:29.145 --> 04:30.895
There are a variety of ways to do that.

04:31.755 --> 04:36.135
Uh, one is of course to have improved community services.

04:36.875 --> 04:41.335
Uh, another is to improve access to, normal

04:41.935 --> 04:42.975
existing community services.

04:43.555 --> 04:45.455
And I'm, I'm the distinction I'm making there.

04:45.475 --> 04:46.895
And when the former would be

04:47.775 --> 04:49.815
agencies in the community dedicated

04:49.875 --> 04:52.375
to providing services and supports.

04:52.715 --> 04:55.495
Uh, the second would be, what we would call normal

04:56.085 --> 04:58.815
community activities and institutions

04:58.835 --> 05:02.575
and agencies that ought to be, more integrative

05:02.755 --> 05:05.135
and that ought to be more open and accepting

05:05.135 --> 05:07.375
and supportive of people with intellectual disability.

05:07.615 --> 05:10.735
I spent much of my career doing quality of life research

05:11.035 --> 05:12.855
for people with intellectual disability,

05:13.435 --> 05:15.695
and I'd like to see that research continue,

05:15.795 --> 05:18.735
but with a particular eye, not just to describing quality

05:18.795 --> 05:23.415
of life, but to, improving our research to be able

05:23.415 --> 05:27.695
to more effectively prescribe, the kinds of supports,

05:27.715 --> 05:30.455
the kinds of community and social services

05:30.555 --> 05:33.735
and supports that, that, we think are important to

05:33.765 --> 05:35.575
what we calling a new moral community.

05:35.685 --> 05:38.135
Perhaps the most important message is that people

05:38.135 --> 05:42.015
with intellectual disability, like everyone,

05:42.235 --> 05:43.495
can live meaningful lives.

05:44.085 --> 05:47.015
They are important contributors to their families

05:47.015 --> 05:48.055
and their communities,

05:48.675 --> 05:51.415
and we want their legacies to be recognized in the way

05:51.415 --> 05:54.575
that we recognize the legacies of any family member

05:54.675 --> 05:56.215
or any important member of the community.

00:00 - As a child, I lived, near a large facility serving people with intellectual disability, so I've always known people with intellectual disability. My grandfather was a painter at that facility, and I would sometimes stop in

00:12 - after work with my grandmother to see him at the paint shop, and, and I would see men working there with intellectual disability, and they were always kind to me, invited me to play horseshoes and things of that sort. but then later when I, was a student, I returned to that facility and worked there summers and later, of course became a psychologist. And over the years did consulting work and other kinds of projects with, agencies serving

00:41 - and people with intellectual disabilities. So both long and short term motivations. and over those years, both my daughter, who is my co-author for the book, and I saw people with intellectual disability in situations of neglect and abuse. And of course, we have a long history of dehumanization of these people, not just in the United States, but in other cultures as well. Did several kinds of things.

01:07 - We actually interviewed, quite a number of people with intellectual disability with whom we became acquainted in our communities. We also, draw Drew on our own experience, to tell stories about people. We had known people with whom we had worked and we reviewed, literature fairly extensively, not just in intellectual disability, but in the more specialized area of, death and dying, of people with intellectual disability.

01:37 - Although our book is not about that, we wanted to have some acquaintance with that. It's one of the, groups of disability known as developmental disabilities. It essentially has traditionally meant, sub average intellectual or iq, capacity in conjunction with impaired life skills and presenting prior to the age of 18, hence the term developmental disability. on the other hand, we think that

02:07 - that's a rather limiting view of intellectual disability. We came to believe that it would be more productive to think of intellectual disability in terms of a social construction, the, interplay between the person and environment. The traditional definitions have essentially focused on characteristics of the person, often biological, genetic, neurological. And the assumption has been that these are fixed traits of the person.

02:38 - we think that it's a more humane and more productive point of view to think of intellectual disability as a social construction. the connection between person and environment that is, malleable. depending upon the context, depending upon how the re environment responds to people with intellectual disability, we think it has Prospect to create what we like to call a new moral community.

03:03 - the idea that environment can support people in ways that, focus on their traits may not. we think of, the notion of a supportive environment in terms of, being able to bridge the gap between personal traits and characteristics of the environment. And if the environment is responsive in, in sufficient ways, individuals can behave in much more normal ways. There's an evolving literature in the last, decade or so, in what's called the supports model.

03:36 - And this is the idea that, I was just discussing the idea that environment should serve to respond to individual needs in a way that that bridges the gaps between what a person can and cannot do, in their environment, whether that's family, community, school, workplace. so we could, for example, perhaps think of a person who is unable to live independently because he or she is unable to cook. there are lots of ways to solve that problem.

04:12 - The person could live with a roommate who can cook. The person could be supplied with packaged meals. The person could be taught to use a microwave oven. any variety of ways, could overcome that if we're sufficiently creative to provide the supports, to bridge that gap. There are a variety of ways to do that. one is of course to have improved community services. another is to improve access to, normal existing community services.

04:43 - And I'm, I'm the distinction I'm making there. And when the former would be agencies in the community dedicated to providing services and supports. the second would be, what we would call normal community activities and institutions and agencies that ought to be, more integrative and that ought to be more open and accepting and supportive of people with intellectual disability. I spent much of my career doing quality of life research

05:11 - for people with intellectual disability, and I'd like to see that research continue, but with a particular eye, not just to describing quality of life, but to, improving our research to be able to more effectively prescribe, the kinds of supports, the kinds of community and social services and supports that, that, we think are important to what we calling a new moral community. Perhaps the most important message is that people with intellectual disability, like everyone,

05:42 - can live meaningful lives. They are important contributors to their families and their communities, and we want their legacies to be recognized in the way that we recognize the legacies of any family member or any important member of the community.

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