Intellectual Disability
in the 21st Century:
Self-Determination
and the Third Wave of
the Disability
Movement
Michael L. Wehmeyer, Ph.D., FAAIDD
Past-President, American Association
on Intellectual and Developmental
Disabilities
Legacy
Pronunciation: 'le-g&-sE
Function: noun
Inflected Form: plural -cies
Etymology: Medieval Latin legatio, from Latin legare
to bequeath
1. anything handed down from the past, as from an
ancestor or predecessor: a legacy of religious freedom.
2
The Kennedy Legacy
President Kennedy addresses the 13th Annual
President John F. Kennedy gives
Eunice Kennedy
the pen he used
Convention
LuncheonShriver
of the National
Association
Retarded
Children
on from
October
to sign intellectual disability legislation
infor
October,
1963
(photo
the
24,
1963
at
the
Mayflower
Hotel,
Washington,
collection of David Braddock, used with permission).
DC (photo from the author’s collection).
3
The Kennedy Legacy
Image and audio from Parallels in Time, Minnesota
Developmental Disabilities Council
http://www.mnddc.org/parallels/
“… I think that particularly at
Willowbrook, we have a
situation that borders on a
snake pit, and that the
children live in filth, that
many of our fellow citizens are
suffering tremendously
because lack of attention, lack
of imagination, lack of
adequate manpower. There is
very little future for these
children, for those who are in
these institutions. ….”
4
The AAIDD Legacy
G. A. Doren, M.D.
President 1878 to 1879
Pennsylvania Training
School, Media PA
Isaac N. Kerlin, M.D.
President 1891 to 1892
Edouard Seguin, M.D.
H.1877
M. Knight, M.D.
President 1876 to
President 1879 to 1880
Hervey B. Wilbur, M.D.
Charles T. Wilbur, M.D.
President 1877 to 1878
George
President 1880 to
1881 W. Brown, M.D.
President 1881 to 1882
Second Annual Meeting
5
June 12-15, 1877
The AAIDD Legacy
1876
1976
Edouard Seguin, M.D.
President 1876 to 1877
Burton Blatt, EdD
President 1976 to 1977
6
Establishing a New Legacy
“… I think that particularly at
Willowbrook, we have a
situation that borders on a
snake pit, and that the
children live in filth, that
many of our fellow citizens are
suffering tremendously
because lack of attention, lack
of imagination, lack of
adequate manpower. There is
very little future for these
children, for those who are in
these institutions. ….”
7
Establishing a New Legacy
8
History the Disability Movement
•
First Wave: Professionals
9
The Professional Movement
1. Disability attributed to deficit and disease.

People with disabilities were seen as broken, diseased,
pathological, atypical, or aberrant.
2. Disability was viewed as a characteristic of the
person; as residing within the person.
3. Associated with negative stereotypes; moron,
menace to society, vegetative states.
3. Reliance on monolithic conceptualizations of
intelligence as measured by IQ tests.
10
Historical Understandings of Disability
Disability
Personal
Incompetence
History the Disability Movement
• First Wave: Professionals
• Second Wave: Parents
12
The Parent Movement
13
The Parent Movement
14
The Parent Movement
15
The Parent Movement
 Earlier stereotypes of disability
replaced with more humane,
though still in many ways
debilitating, stereotypes.
 People with disabilities seen as
objects to be fixed, cured,
rehabilitated and pitied; as
“victims” of their disabling
condition, worthy of charity.
 Holy innocents; eternal
children
 Increased emphasis on “mental
age.”
16
A Self-Made Man
by Raymond J. Gagne
“My name is Raymond J.
Gagne. This is a true
story. I was born on
January 10, 1945 in
Attleboro, Massachusetts.
I am a person with
cerebral palsy” (p. 327).
17
Eight Years of Power
• My mother felt there was something wrong with
me. She took me to many doctors and hospitals
to see if they knew how to help me. They told my
mother I would never walk.
• At the time, there was no school for me. I stayed
home with my grandmother, who took care of me.
She had her hands full.
• When I was 8, my mother told me I was going
away.
18
A Life of No Power:
Eighteen Years in an Institution
• After arriving at the state school, I was put in
Building 7.
• Every morning we would wake up at 6:00. An
attendant would help me put on the clothes he
had laid out the night before. I didn’t have any
say about what I wore.
• The staff never seemed to prepare me for living
outside the institution. They didn’t seem to think
I would make it on my own. Up until the age of
14, I wasn’t allowed to go to school.
19
History the Disability Movement
•
Third Wave: Self-Advocacy
Movement
–
–
–
•
•
Community Inclusion
Empowerment
Self-Determination
Independent Living and Disability
Rights
People First
20
The Normalization Movement
1. Normal rhythm of day.
2. Normal routine of life.
3. Normal rhythm of the year.
4. Normal developmental
experiences of the life cycle.
5. The person’s choices, wishes and
desires have to be taken into
consideration as nearly as possible,
and respected.
6. Living in a bisexual world.
7. Normal economic standards.
8. Standards of the physical facility
should be the same as those regularly
applied in society to the same kind of
facilities for ordinary citizens.
Bengt Nirje
21
Independent Living and
Disability Rights Movements
Ed Roberts
• Hand in hand with
civil rights and
disability rights
movement.
• Emphasized access
and equality of
opportunity, with a
focus on independent
living.
22
Self-Advocacy Movement
• People with
intellectual disability
forming social and
advocacy groups.
• People First
Justin Dart
at signing of ADA
23
Twenty Years in the Real World:
A Struggle for Power
• The day I moved out, some staff told me I would
be back in a month. They may be still waiting for
me to come back.
• That same year I went on a vacation to
Washington, D.C. by myself. This was the first
time I had ever done this.
• During the fall I moved into my own apartment
after a counselor at a camp for people with
cerebral palsy told me she thought I could.
24
Twenty Years in the
Real World:A Struggle for Power
• I learned about Section 504 of the
Rehabilitation Act and helped found a selfadvocacy group. I learned the skills of
leadership, advocacy, consumer organizing
and assertiveness by watching people,
participating in group meetings and asking
questions. My ability to communicate my
ideas and to facilitate work toward changing
the status quo developed over time.
25
Twenty Years in the
Real World:A Struggle for Power
• Unlike the staff at the institution, the
human services professionals I met at
this job treated me with respect. They
gave me a chance to contribute my
input and feedback and believed in
many of my ideas. My colleagues also
adapted the working environment to
help me communicate with them.
26
History the Disability Movement
•
Third Wave: Self-Advocacy
Movement
–
–
–
•
•
•
•
Community Inclusion
Empowerment
Self-Determination
Independent Living and Disability
Rights
People First
Consumerism
Deinstitutionalization
27
ChangingUnderstandings of Disability
Disability
Environment
Personal
Personal
Incompetence
Competence
Implications of Changing
Understandings of Disability
• Strengths-based
• Focus on environment/context fit, not “fixing” the
individual.
– “The most fundamental theme [with regard to working toward
a new agenda for ID within global context] is a refocus from a
concentration on individuals with a disability to studying them
within the social contexts in which they live” (Emerson,
McConkey, Walsh, & Felce, 2008, p. 79).
Emerson, E., McConkey, R., Walsh, P.N., & Felce, D.
(2008). Intellectual disability in a global context. Journal
of Policy and Practice in Intellectual Disabilities, 5(2), 7980.
Supports Intensity Scale
30
What are Supports?
(1) Supports pertain to resources and strategies,
including individuals, money and other
assets, assistive devices, and education and
training;
(2) Supports enable individuals to access other
resources, information, and relationships
within integrated environments; and
(3) Supports use results in increased integration
and enhanced personal growth and
development
31
Array of Supports
• Luckasson and
Spitalnik (1994)
suggested that
“supports refer to an
array, not a
continuum, of
services, individuals,
and settings that
match the person’s
needs” (p. 88).
Specialized Services
Generic Services
Nonpaid Supports
Family & Friends
Person
32
Establishing a New Legacy
AAIDD Mission Statement
AAIDD promotes progressive policies, sound
research, effective practices and universal human
rights for people with intellectual and
developmental disabilities.
33
Establishing a New Legacy
“You have to have a
vision. It’s got to be a
vision you can
articulate clearly and
forcefully on every
occasion. You can’t
blow an uncertain
trumpet.”
Father Theodore Hesburgh
34
“When the bellman
is dead, the wind
will toll the bell.
So hurry wind, or
revive yourselves
noble bell
ringers.”
Burton Blatt