ERIC ED344359: Supporting the Growth of the Self-Advocacy Movement: What We Can Learn from Its History and Activists.

39 Pages·1991·0.52 MB·English

by  ERIC

DOCUMENT RESUME
EC 301 085
ED 344 359
Brunk, Gary L.
AUTHOR
Self-Advocacy Movement:
Supporting the Growth of the
TITLE
History and Activists.
What We Can Learn from Its
Center on Families and
Kansas Univ., Lawrence. Beach
INSTITUTION
Disability.
P0-11
REPORT NO
91
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39p.
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*Developmental
*Advocacy; Change Strategies;
DESCRIPTORS
Autonomy; *Self
Disabilities; Interviews; Personal
Social History;
Actualization; *Social Action;
Analysis
Sociocultural Patterns; *Trend
*Self Advocacy
IDENTIFIERS
ABSTRACT
that have
This study identifies the factors
people
growth of self-advocacy among
contributed most to supporting
by examining the history of
with developmental disabilities,
and
interviews with six self-advocates
self-advocacy and reporting on
that
movement. The study concludes
six advisors of the self-advocacy
of
has been greatly assisted by the power
the growth of self-advocacy
emphasized learning by doing, that
example, that the movement has
and safe environment where
self-advocacy groups provide a supportive
able to gain a new sense of
persons who have been undervalued are
self-advocacy requires material
confidence and possibilities, that
important
and that self-advocacy is
support and ideological support,
supported by persons and institutions
enough that it is worth being
Specific recommendations are made
outside the self-advocacy movement.
professionals who work with persons
for ways in which agencies and
support the further g:owth of
with developmental disabilities can
(JDD)
self-advocacy. (32 references)
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Supporting the Growth of the
Self-Advocacy Movement:
What We Can Learn from Its History
and
Activists
P0-11
Gary L. Brunk
1991
IAN
© Beach Center on Families and Disability
The University of Kansas, 1991.
Supporting the Growth
2
Abstract
The self-advocacy movement in North America
among people with
developmental disabilities has grown rapidly since its beginnings
in the mid-1970s.
This study identifies the factors that
contribute most to supporting growth of self-advocacy by
examining
the history of self-advocacy and reporting
on interviews with
leaders and veteran advisors of the self-advocacy
movement.
It
then makes specific recommendations for how agencies and
professionals who work with persons with developmental
disabilities can support the further growth of
self-advocacy.
4
Supporting the Growth
3
Supporting the Growth of the Self-Advocacy Movement:
What We Can Learn from Its History and Activists
in the United
In 1974 the first self-advocacy conference
disabilities in
States was organized by persons with developmental
Since then hundreds of local self-advocacy
the state of Oregon.
States and Canada and around
groups have formed across the United
self-advocacy
the world, helping justify the frequent use of
First of
movement in descriptions of thir development (People
Washington, 1985; Rhoades, Browning, & Thorin, 1986).
from
Many self-advocacy groups exist in relative Isolation
well
each other, but in several states there are now either
developed networks of groups or formal statewide organizations
Furthermore, national self-
with elected officers and paid staff.
advocacy organizations have recently formed in Canada and the
While it may still be accurate to describe the
United States.
self-advocacy movement as fragile, it is clear that it is more
than just a passing phenomenon (Brunk, 1987).
The purpose of this study is to understan6 why self-advocacy
has grown as rapidly as it has in order to identify the factors
The study first
that contribute most to supporting its growth.
the
examines the history of the development of self-advocacy in
This section is based primarily on written
United States.
by persons with
sources, including speeches and articles
developmental disabilities who have been involved in the self-
advocacy movement.
Supporting the Growth
4
The second section is based
on interviews with leaders of the
movement and nondisabled self-advocacy advisors.
The interviews
were used to draw information from the persons who are currently
most directly involved in the self-advocacy movement.
The third
section summarizes the information from the first
two sections and
draws some conclusions.
Understanding the Growth of Self-Advocacy
The North American self-advocacy movement
seems to have its
roots in the social clubs for people with mental disabilities
that
existed in Sweden in the 1960s (Williams & Shoultz,
Those
1984).
social clubs emphasized the importance of
decisionmaking by their
members and supported that emphasis by providing
training in
parliamentary procedures and real experience in decisionmaking
through the election of officers and participation
in committees
(Nirje, 1972).
As those clubs developed they began exchanging
visits and
organizing regional meetings.
Those interactions culminated in
a
national conference in Malmo attended by 48
representatives from
throughout Sweden and two guests from Denmark.
The purpose of the
May 1970 conference in Malmo
was to discuss concerns related to
leisure activities, residential living, and
employment, but the
real significance of the conference
was that it was perhaps the
first organized articulation of
a desire for greater self-
determination at a national level by
persons with mental
retardation (Nirje, 1972; Will:ams & Shoultz,
1984).
Supporting tne Growth
5
That desire found expression throughout the conference, as
findings
evidenced by the following excerpts from a summary of the
of the conference:
in
We all agree that we want more rights to participate
decisions, especially in planning and carrying out our
leisure time activities.
We all think one should decide oneself what to do
There should be student councils [in
during vacation.
Sweden's special schools] which can take part in decisions
in
about the curriculual, the choice of books, leisure time
school, etc.
We want to choose our vocations ourselves, and have
influence over our education.
We think we should be present when our situation is
discussed by doctors, teachers, welfare workers, foreman,
(Nide, 1972)
etc.
The Malmo conference inspired conferences in Britain in 1972
Five persons from Oregon
and in British Columbia in 1973.
Three were
attended the conference in British Columbia.
residents of the Fairview Hospital and Training Center, a state
institution, and the other two were staff members from Fairview.
The Oregon group returned enthused about the idea of a statewide
conference and organization and were able to convince other
value of
persons, both inside and outside of Fairview, of the
Their efforts led to a conference in
organizing a conference.
Supporting the Growth
6
1974 that attracted 560 people .and
a second conference in 1975
that was attended by 750 people.
Persons with mental disabilities
were involved in all aspects of planning, organizing, and leading
both conferences.
While nonhandicapped persons did provide
support and advice, they did so in
ways that would encourage the
development of skills and leaders
among the persons with
disabilities (Edwards, 1982; Williams & Shoultz, 1984).
Oregon continued having annual conferences, but perhaps
more
importantly, it became a model and
source of inspiration for the
formation of other self-advocacy
groups across the country who
contacted them or who saw a film about the second conference
called Peop7e First (Edwards, 1982; Rhoades, et al.,
1986;
Williams & Shoultz, 1984).
In addition to the groups that had
been inspired by Oregon, there
were also self-advocacy groups that
began forming independent of the events in that state,
as well as
some that had pre-dated the Malmo conference (Williams & Shoultz,
1984).
Several hundred self-advocacy
groups involving several
thousand persons with mental disabilities have formed
in the U.S.
and Canada since the first two Oregon conferences.
One study in
the early 1980s identified 152
groups and estimated that those
groups had a total of 5,000 members (Browning, Thorin, & Rhoades,
1984).
We can make a more current estimate based
on a recent
directory of self-advocacy groups which lists 380
groups
(Association for Retarded Citizens, 1990).
If we use the same
Supporting the Growth
7
of
formula used by the Browning study, the estimated number
These numbers underestimate the real
members would exceed 12,500.
growth of self-advocacy because the ARC directory does not include
York, Kentucky, and
groups the author has contact with in New
Kansas, and there may be other groups that are not included.
In the last decade one of the significant developments has
been the growth of viable statewide self-advocacy organizations.
People First of Washington was one of the early statewide
organizations with the funding needed to maintain staff, offices,
Since
and communications essential to a functioning organization.
1981 it has opened three offices, hired a staff (over 50% are
46 groups
persons with developmental disabilities), and grown to
(Association for Retarded Citizens, 1990; People First of
Washington, 1985 & 1986; Rhoades, et al., 1986).
In New
Statewide organizations have formed in other areas.
Jersey, the United Self-Advocates held their sixth annual
The conference was attended by 450
conference in June 1990.
people representing over 50 groups (New Jersey Self Advocate,
Almost 300 people from five groups attended the Speaking
1990).
for Ourselves conference in Pennsylvania in May 1990 (Speaking for
Ourselves, 1990). And in New York, a new statewide organization
drew 250 persons to its first self-advocacy conference in th9
undated).
summer of 1990 (Self-Advocacy Association of New York,
More recently, self-advocates in the United States have taken
At a conference in Estes
steps to form a national organization.
9
Supporting the Growth
8
voted to form
1990, 400 self-advocates
Park, Colorado, in September
steering committee to make
organization and elected a
a neional
and structure of the
recommendations about the mission
Committee of Self Advocates,
organi.1.0-- (National Steering
in Nashville,
Then at a second national conference
1991).
ratified a
700 self-advocates
Tennessee, in September 1991,
local self-
coalition of state and
proposal to form a national
of
Steering Committee composed
advocacy groups, coordinated by a
(8. Carabello, personal
elected regional representatives
communication, September 9, 1991).
from regional
Likewise in Canada representatives
March 1990 to debate a draft
organizations met in Winnipeg in
People
the formation of National
constitution that will lead to
First (Laroche, 1990).
growth in self-advocacy among
What explains the extraordinary
to
I suggest that the clue
people with mental retardation?
the one
the conflict between, on
understanding this growth lies in
relegated
construction of disability that
hand, an existing social
segregated
to an inferior and
people with mental retardation
of
hand, a new ideology and practice
status and, on the other
acute
That conflict became particularly
equality and integration.
and a
in the process both motivation
in the mid-1970s, creating
In what
self-advocacy.
encouraged the growth of
new space that
argument.
follows I will seek to elucidate my