ERIC ED332430: Self-Advocacy, Feature Issue of IMPACT.

21 Pages·1991·0.82 MB·English

by  ERIC

DOCUMENT RESUME
ED 332 430 EC 300 292
AUTHOR
Hayden, Mary F., Ed.; Shoultz, Bonnie, Ed.
TITLE
Self-Advocacy, Feature Issue of IMPACT.
INSTITUTION
Minnesota Univ., Minneapolis. Inst. on Community
Integration.; Minnesota Univ., Minneapolis. Research
and Training Center on Commnnity Living.
SPONS AGENCY
Administration on Developmental Disabilities (DHLW,
Washington, D.C.; National Inst. on Disability and
Rehabilitation Research (ED/OSERS), Washington,
DC.
PUB DATE
91
NOTE
21p.
PUB TYPE
Collected Works - Serials (022) -- Reports -
Descriptive (141)
JOURNAL CIT
IMPACT; v3 n4 Win 1990-91
EDRS °RICE
MF01/PC01 Plus Postage.
DESCRIPTORS
Activism; Adults; *Advocacy; *Disabilities;
Normalization (Handicapped); Personal Autonomy;
Political Power; *Self Determination; *Social Action;
Social History; Social Support Groups
IDENTIFIERS
*Self Advocacy
ABSTRACT
This newsletter issue gives people with disabilities
the opportunity to educate others about self-advocacy. Twelve of its
17 articles are by individuals with disabilities who are
self-advocates, or by other representatives of self-advocacy
organizations. It includes information on self-advocacy strategies
and examples of its impact on lives. Article titles and their authors
include: "Out of My Old Life and into My New One" (Michael J.
Kennedy); "A Short History of American Self-AdvocacY" (Bonnie
Shoultz); "Starting Local Self-Advocacy Groups" (Nancy Ward);
"Advocacy in the Danger Zone" (interview with Debbie Robinson);
"Self-Advocates and the Legislature: Making Voices Heard at the
Capitol" (Walter Rupp); "Independence or Sponsorship: An Issue for
Self-Advocacy Groups" (Bonnie Shoultz); "Who Can Teach Change
Better?" (Beatrice Roth); "Elements of Choice" (Dennis J. Campbell);
"Confessions of a Professional" (Mary F. Hayden); "A New National
Organization? News from the First North American People First
Conference" (Bonnie Shoultz); "Self-Advocates on Boards and
Committees"; and "Tennessee Self-Advocates Conduct Quality Assurance
Surveys." A list of 11 resources is included. (JDD)
***********************************************************************
Reproductions supplied by EDRS are the best that can be made
from the original document.
***********************************************************************
'PERMISSION TO riEFRomous nva
GRANTED BY
MATERIAL HAS BEEN
RreGEIVED
'fiL444t
INSTITUTE ON COMMUNITY INTEGRATION
TO THE EDUCATIONAL RESOURCEI
INFORMATION CENTER (ERIC)."
iv
Abp.
.41111116.
U.& DEPARTMENT OP EDUCATION
Office of EdcationaI Research and Improvement
EDUCATIONAL RESOURCES INFORMATION
Volume 3(4). Winter, 1990/91
Feature Issue on Self-Advocacy
CENTER (ERIC)
(ihis
document has boon reproduced as
received from the person or organization
Points ot view or opinions stated in Ihit docu
originating it
ment do not nicessanty represent official
OERI position or policy
Out of My Old Life and Into My New One
From the Editors:
by Michael J. Kennedy
Many people believe that indi-
viduals with disabilities are unable
I grew up in three New York institutions. In 1982, when I was 21, I
to speak for themselves. This
moved into a group living situation in the community called a supportive
belief is held by the general
apartment. I lived with
public as well as by profes-
three other men with
sionals, policymakers,
cerebral palsy, and we were
parents, and legal advocates.
supervised by staff when-
The self-advocacy move-
ever we were home. The
ment has demonstrated that
supported apartment was
people with disabilities can
much better than the institu-
speak for themselves and
tion, but in the six years I
that they are valuable
lived there I learned every-
contributors to resolution of
thing I could learn and was
policy and service issues.
ready to be on my own.
This issue of IMPACT
Also, the program was
a
i_
-
gives people with disabilities
funded by Medicaid and had
"444136.
the opportunity to educate
too many rules and regula-
_
others about self-advocacy.
tions, like having to have
Michael Kennedy (right) at home with his roommates.
Twelve of its 17 articles are
goals and a service plan.
by individuals with disabilities who
I knew what I wanted, but 1 needed help to get it. So I started talking
are self-advocates, or by other rep-
to the director of the program about being on my own. I was listened to in
resentatives of self-advocacy
one way, but not in another way because nothing was happening. What I
organizations. It includes informa-
had to do to get my point across was to threaten to move back into the in-
tion on self-advocacy strategies and
stitution near my family in the Adirondack Mountains area. The director
examples of its impact on lives. It is
got wind that I was actually going to do it, and the agency staff didn't
our hope that these articles will
I know it would have been a mistake, and I didn't want to quit
want that.
affirm for all that people with dis-
the
my job at the Center on Human Policy, but I felt my back was against
abilities have the right and ability to
wall. Mat was the beginning of my getting my own home.
advocate on their own behalf, and
The agency told me about a new program they had just received
will encourage more persons with
funding for. It was called a Family Care program, but what it does is to
disabilities to be self-advocates.
match a person with roommates and the other supports he or she needs.
One of the staff at the supported apart-
CONTENTS
me into the office one
% ment, John, called
4\ day and asked me if I would consider
Informed Choke
10
2
Overview of lieltaAdvocsey
% setting
up a home with him and his
Confession
12
Stardag Sdkidvocacy Grow 3
roommate Gordy. I agreed, with the
Nodose' Conforms*
13
4
Advocacy to the Mager Zone
understanding that I didn't have to
Self.Advocatee ea
6
Self.Advoescy ud Logleladon
'w follow Medicaid rules or have a service
Boards sad Committees 14
7
Iadepeadeace or Spossoreldp?
Resource List
16
Advisor's Role
Life, continued on page 9
LL(
A report from the Research and Training Center on Community Living and the Institute on Community Integration (a University
Affiliated Program) at the University of Minnesota.
MT ERN mum
2 Overview
A Short History of American Self-Advocacy
by Bonnie Shoultz
others. A directory of self-advocacy groups prepared
"We are speaking for ourselves; No one else can do
early in 1990 by the Association for Retarded Citizens
as well...."
of the United States listed 380 groupsand there are
These first lines of a song written for Speaking for
many others they did not locate!
Ourseires of Pennsylvania aptly suinmarize the aims
The maturity of the self-advocacy movement has
and achievements of the self-advocacy movement for
consisted not just in the growth in numbers of groups,
people with developmental disabilities. The seeds of
or in the development of statewide organizations, but
this movement can be traced back as far as 1968,
also in the depth and complexit, of the issues people
when a Swedish parents' organization sponsored a
are tackling and in the ways mei ibers are thinking
meeting for people with developmental disabilities;
about self-advocacy as a whole. l'or example:
the participants listed the changes they wanted in their
Speaking for Ourselves in Colorado planned and ran
programs, and gave their list to the parents' organiza-
the First North American Conference on Self-
tion. During the next five years three other confer-
Advocacy, held September 27-October 1, 1990.
forums
ences were held around the world, designed as
in which persons with developmental disabilities
People First of Washington conducts statewide
could speak on their own behalf about their needs and
projects to help people with disabilities participate
wants. A small group of people from Oregon attended
meaningfully in areas that affect their livrs, such as
strongly that the
one of those conferences, and felt their Individual Program Plan meetings and in deci-
conference had not lived up to its promise because the
sions as to where and when they will move.
professionals had done all the talking. As a result of
People First of Nebraska has worked with the
their dissatisfaction, the People First movement began
Nebraska Legislature to eliminate outdated terminol-
on January 8, 1974, at a meeting of Oregonians
ogy (words such as "feeble-minded" and "idiot" )
discussing the idea of organizing a conference run by
from all the Nebraska Statutes.
and for people with developmental disabilities. Some-
being called
People First of Tennessee has conducted a consumer
one at the meeting said, "I'm tired of
.
retardedwe are people first." "People First" was
monitoring project in group homes in Tennessee; they
feel strongly that monitoring for quality should be
chosen as the name for the convention, which was
done by consumers because the other monitors often
held in October, 1974, in Oregon.
do not even speak to people who live in these homes.
Between 1974 and 1984, self-advocacy groups
sprang up all over the United States and Canada, and
Speaking for Ourselves of Pennsylvania has concen-
in other parts of the world including Britain, Australia,
trated on getting members onto important policymak-
and Sweden. Many were sponsored by parents' or-
ing boards and on negotiating delicate advocacy issues
ganizations or service agencies, but others were
on behalf of vulnerable members. They have advo-
formed as (or became) independently-operated groups.
cated for people at a facility in Philadelphia where
In 1984, the first International Self-Advocacy Leader-
many members lived, and were active in 1989 during
ship Conference was held in Tacoma, Washington.
a $6 million funding crisis in Philadelphia.
The self-advocacy movement continues to grow.
In the United States, several states have developed
Representatives of these and other self-advocacy
statewide organizations with numerous local chapters,
organizations are passionately conunitted to to what
and now there is serious discussion of forming a
they do and have a depth of experience to share. As
national organization. Statewide organizations
individuals and groups they are speaking for them-
include People First of Washington, with forty-five
selves and are at last being listened to. No one else
local chapters; Speaking for Ourselves in Pennsylva-
can do as well.
nia, with six local chapters; People First of Nebraska,
with eleven local chapters; People First of Tennessee,
Bon.;,e Shoultz is Associate Director for Training and
with twct.ve local chapters; Speaking for Ourselves of
Information at the Center on Human Policy, Syracuse
University, 724 Comstock Ave., Syracuse, NY 13244-4230.
Colorado with fourteen local chapters, and many
Self-Advocacy Strategies 3
Starting Local Self-Advocacy Groups
by Nancy Ward
advisor. The question is whether the person is willing
People First of Nebraska, Inc. has 14 local chap-
to put the group's interests above the interests of the
ters across the state. As a member and a staff person
agency they work for.
of People First of Nebraska, I have helped to start 10
of these. The suggestions for organizing a local self-
(3) The advisor should not be paid to be the
advocacy group contaii.:4 in this article are based on
advisor. People who have disabilities already have
my experience.
enough paid people in their lives.
The starting point is finding a place where people
(4) The meetings should not be held in the work-
who have a disability are (such as a sheltered work-
shop or group home. They should be held in the
shop), and talking to people about your organization
community (e.g., bank, library, church).
and what self-advocacy means to you. Ask them if
they know what their rights are. If they don't know,
Now that you have asked them to start a group,
then ask them if they think they should be able to say
explain to them how to get members. You don't need
where they want to live or work. More than likely,
a lot of members to form a chapter. You can start
they will answer "yes." Tell them this is one of their
with four people. Have the four people ask their
rights. Ask them if they can think of more. Then ask
friends if they'd be interested in becoming members,
them if they know what goes along with having rights.
and just keep building it up. It is important to get the
If they don't, ask them what "responsible" means.
community involved. This is a good way to do that.
Usually, they will see the connection between having
After you have been a chapter for awhile, you will
rights and being responsible for your actions.
want to elect officers. Usually, the officers are
It's very important, when you are explaining self-
Groups, continued on page 17
advocacy to people, that you explain it so they can
understand, but don't put people
down by talking down to them.
Give them examples of the self-
What Self Advocacy Means to Me
advocacy skills you and your
friends have. Ask them if they'd be
I didn't see myself as a parson because of all the labels that were
interested in starting a chapter.
placed on me. Now I see myself as a person. People First taught my
There are four things I think
how to say "Yes, I have a disability and that's okay." People First
you need to start a chapter:
disability" so people see us as
wants people to say "person who has
People
(1) The people you are trying to
a person fest and our disabilities second. Until I got into
First, I didn't know how to &eat my Mop They had this com-
get interested in becoming members
have to make the decision for them-
mercial on TV for Special Olympics where they paraded !Ms across
selves and they have to have a
the stage. The image they porttayed was "Pity us because we have a
disability." This made me mad so I yelled at the TV. A lot of good it
common goal.
does to yell at the TVl This is when my *lends talked to me about
(2) The group will need an
joining People First of thiC0111. There I leaned how to direct my
advisor, someone from the commu-
fbelings in a positive way. An example of this is when we mote to
nity who gives support to the
the Joaeph P. Kennedi Foundation, which sponsors Special Olym-
members. Ideally, the advisor
pics, about how we het about halting people pity us. This is the
should not be a person who works
worst thing people can do to people who have a disability because it
in an agency that serves the people
doesn't give us an oppotttudty to grow. The commercW was taken
in the chapter, because how are
off TV, perhaps because a lot of people wrote lettere like outs. Now
members going to address issues
I do a lot of public speaking but it took me five years to get confi-
about staff if stdff members are
deuce in myself to do it. And this is why my self-advocacy skills are
there? Sometimes, however, staff
so important to me. -Nancy Ward
members can be helpful in getting a
group started and in being a good
4
4 Self-Advocacy Strategies
Advocacy in the Danger Zone
how she was treated while she was there, and trying to
Note: During the First North American People First
find out what they were doing to find out what was
Conference, I had the opportunity to interview Debbie
wrong with her. They didn't seem to be doing any-
Robinson, President of the Board of Speaking for Our-
selves. She has been working within the self-advocacy
I didn't
thing, or not much, because she was still sick.
organization in Pennsylvania for five years. We talked
know. I was concerned.
about advocating for people in the Danger Zone.
So, I got in touch with a few contacts who were in
-- Mary F. Hayden, IMPACT Editor
the medical profession. I told them what I saw, the
situation as I saw it, and my concern that no one was
Interviewer: What is the Danger Zone?
really looking at her to find out what was going
on...We went to see the friend
Debbie: When you speak for
who was sick.[After the visit, ad-
someone, sometimes it is a job
ditional contacts were made to
that entails dangers. [For ex-
enable the member to obtain the
ample,] when you're talldng about
medical care that she needed.]
another person's health, when
[In another example,] mem-
they are not getting the proper
bers asked me to come down to
care. Sometimes I have to go and
the institution...see where they
try to find out why that particular
lived and see the situation. It
person is not getting medical
didn't look good either. They
care. [I have to do it] in way to
were not getting proper medical
not get him or her in trouble with
and dental care.
the people who they live with.
Inte rviewer: What type of con-
Interviewer: Using your ex-
.
cerns did your members have
ample about medical care, how
about the facility?
would it be dangerous for the
ening the First North
Debbie Robinson addr
person for you to help him/her?
Conference.
American People First
Debbie: We saw things there that
would turn your stomach. It was a disgrace...
Debbie: Well, mainly because you are stepping in a
medical situation. I am not a medical doctor...
Interviewer: Were people afraid of other people
I will use a story. I was involved with a member's
doing something to them?
medical health because she stopped coming to the
Debbie: Yes, that too. When you are dealing with
chapter meetings. I found out she was sick and where
people with disabilities [who live] in a setting like an
she was at. She was not getting proper medical
institution...[where] they are not getting proper care,
assistance...they were not taking proper care of her.
I
staff are not treating them right and some of them
visited her to try to find out what was going on...I tried
have been abused...something had to be done. On the
to find out as much information as I could. I tried to
other hand, we had to do it in a way that they [mem-
help this person get medical assistance. So, I paid a
bers] wouldn't get too much abuse from staff.
It was
couple of visits, talked to some people, and tried to
not easy. They still had to live there. I can go home.
find out what was really going on. I found out she
They had to stay there.
wasn't getting the care she needed to find out what
You can't just jump into it. There are a lot of
was wrong with her. This person needed to go into a
steps involved. It isn't something you can just jump
hospital setting to find out what was going on with
into and say "I'm going to save you". It isn't like that.
her.
You have to do it slowly and step by step. It was too
Interviewer: Why was she in danger while you were
big for the chapter and our board had to get into it...I
checking things out for her?
received permission from the board to step into it.
The board backed me up. I had to report what was
Debbie: The way the situation developed and seeing
happening. It was touch and go. It's hard when you
where she was at, and how they took care of her, and
5
Self-Advocacy Strategies 5
and see it for yourself." So, for a couple of weeks
see people crying. I've seen that. It's the saddest
thing. You can't jump in. It was a slow painful
people [from the state] went down there and saw the
same things that we did. The same exact thing...
process for our members.
Everybody came back with their report.
Interviewer: What did you get for people?
I really had to do something because members
Debbie: Not as much as I hoped. I was kind of
were really scared to go back there. The scary part
disappointed. I wanted to close the place...We were
was that they were afraid that they'd go back to their
able to get most of our members out that wanted out.
staff and get hurt again. Unfortunately, it did continue
We still have a few there that need to get out. The sad
to happen until I got it straightened out. Slowly but
thing about this whole thing is that two friends had to
sufely we were trying to get things done, but we had
separate because they were from separate
to get the report from them [the state] to find out what
counties[therefore, placed in their respective coun-
was going on. That is why we had a weekly meeting
ties]. I want to get these two back together.
with the state to say to them, "This is what is happen-
Speaking for Ourselves got the counties involved.
ing. You have to do something about it."
We were the first ones to see what was going on in
You have to be careful. You are dealing with
this institution. We called a meeting with the state
peoples' lives. They are in situations where it is easy
and said, "Look, we have the evidence right here.
for you to pack up and leave. I had to go home and
Members aa being abused. You have to do some-
leave people there, knowing in my mind that I couldn't
thing about it. Something has to happen now...I'm not
do anything. I would pray that no one else would
going to move until you say you will go down there
Danger Zone, continued on page 18
Tennessee Self-Advocates Conduct Quality Assurance Surveys
Twelve members of People First of Tennessee, Inc., conducted quality assurance activities at two agencies
in Tennessee during the summer of 1989. They split into two teams, each of which looked at two group
homes and two sheltered workshops. At the end of the site visits they presented the results to the agencies
at an exit conference. Members of the two teams describe their experiences in the following interview.
Those interviewed were Beth Sievers, State President; Samantha Sasnett, State Secretary; Sissy Heatherly,
Past State Officer; Walter Phillips, Past State Officer; and William Goodman, Staff Self Advocate. The
interviewer was Betty Henderson, Office Manager with People First.
Bill: People First members ought to see what we
Interviewer: Why did you all do the consumer
can do so they can go out and do it also.
monitoring surveys, what did you learn, and how
was it valuable to the agencies surveyed?
Beth: To show that we really do care about other
people and the services they receive.
Sissy: We've seen other people give a survey, but
we didn't know what it was like. We did a survey
Interviewer: What kinds of things did you look
so that we could be surveyors one day ourselves. It
for in the consumer monitoring survey?
was important so that the centers and group home
Bill: I looked for wiring and things that were dan-
people can't walk on their [clients'] toes, so that we
gerous and I reported it to the staff. I read through
can see that things are going right.
the clients' files with their written permission. I
Samantha: So they (the consumers) can have a
found out some interesting things, their strengths
better living and a better job.
and weaknesses. I asked questions about how
much they get paid per piece or bimonthly. I
Walter: To find out what they (the consumers)
asked the staff, not the clients. I talked to the
like about their agency and their jobs, and see what
it was like to live in the group homes.
Survey, continued on page 17
6
6 Self:Advocacy Strategies
Self-Advocates and the Legislature:
Making Voices Heard at the Capitol
by Walter Rupp
him. "It just takes a little practice, then it's easy",
Lobbying, policymaking, the legislative process.
says Richard.
The domain of the professional lobbyist or politician?
Bill Nelson, also an ACT member, stresses the
Not at all, according to members of Advocating
importance of knowing your representative. "We
Ch...ige Together, Inc. (ACT), a St. Paul, Minnesota,
elect our representatives to speak for us. If we don't
based self-advocacy group for people with develop-
tell them what we think, they won't have good infor-
mental disabilities. ACT members have q proven
mation to make decisions. We have to talk to them so
track record at the Minnesota legislature. They have
they can do their jobs."
shown that not only does the consumer's perspective
Cliff Poetz's experience with
count, but that the consumer's voice
influencing the legislative process
and presence at the legislature is a
takes many forms. He is active
powerful force to effect legislative
with ACT, ARC (Association for
change. In this article, ACT Board
Retarded Citizens), and UHF
members share their expertise and
(United Handicapped Federation).
experiences working with legisla-
At ACT and ARC, Cliff works hard
tures.
teaching self-advocacy skills to
Gloria Steinbring, President of
people with disabilities. For
Advocating Change Together, says,
example, at ACT Cliff has taught
"It is important tbr legislators to
people how to give testimony at
hear from consumers. That really
public hearings, and at ARC he
makes a difference. Legislators hear
helped with voter education for
from professionals a lot. When they
people with developmental disabili-
meet with us (consumers) about
ties. In addition to emphasizing the
issues affecting us, they really listen
importance of grassroots organizing
to us." She emphasizes the impor-
in order to be effective at influenc-
tance of getting involved in self-
ing the legislature, Cliff also em-
advocacy as the best way to learn
phasizes getting involved with
how to influence the legislature.
political campaigns. He says, "I get
"ACT has been my education. I
Ken Tice, ACT Consumer Advocate,
involved in the campaigns of politi-
has testified before the Minnesota
only finished 7th grade, but that
legislature many times. Here he speaks
cians I support. Door knocking,
doesn't mean I can't learn. I've
at an ACT meeting.
distributing campaign literature,
learned how to be a lobbyist, how
and helping with mailings at campaign headquarters;
the legislature works, and how to teach others what I
these are good opportunities to get to know the legis-
know."
lature and the issues." Cliff says that he used to be
Richard Mathison, an ACT Board member says
reluctant and somewhat fearful of getting involved in
that there are a couple of ways to learn about and
lobbying and giving testimony at hearings. "It takes
luence the legislative process in Minnesota. Rich-
time, but you get used to it. I'm not afraid to speak up
ard says, "I learned about the legislative process by
now."
joining Advocating Change Together, and Partners in
Ken Tice, Consumer Advocate with ACT, talks
Policymaking at the World Institute on Disability."
about giving testimony at the State Capitol. "I've
Richard points out that "hands-on" experience is the
given testimony many times. It's kind of scary at first,
best teacher. Through writing letters to state legisla-
but it's not too hard. I think it's very, very important
tors as part of his involvement with ACT, and visiting
that consumers give testimony on bills and laws.
the offices of Minnesota's state legislators as part of
They will listen to consumers because we are the best
his Partners in Policymaking training, Richard learned
how to communicate his views on policies affecting
Legislature, continued on page 1 5
110
Self-Advocacy Issues 7
Independence or Sponsorship:
An Issue for Self-Advocacy Groups
by Bonnie Shoultz
top of its list of concerns. In other words, it is likely
There are basically two ways in which self-
to be very difficult for a self-advocacy group to put its
advocacy groups function across the country. Some,
own needs first when everything has to go through the
like several of the statewide organizations, are inde-
pendent, autonomous organizations that have their
larger organization.
own boards of directors and make independent deci-
II The Independent Group
sions about their own affairs. Others, both statewide
and local organizations, are ,Tonsored by larger
The advantages of independence for a group
organizations such as an advocacy organization, a
include the opportunity for greater control over its
parents' group, or a service provider. For
own affairs, such as making decisions, getting in-
the Association for Retarded Citizens in a cominunity
volved in controversies, and applying for funding for
may sponsor the group or even consider tilt; group as
the projects it wants to carry out, it may be easier for
one of its "programs" for which they receive fanding.
the independent group to be part of a coalition of
Or, a group home or sheltered workshop may sponsor
groups that all want the same thing. The independent
a group on its premises. In either of these cases, the
group relies on itself, looking to its friends for assis-
group may have an outside volunteer as an advisor, or
tance, by not depending on any one organization for
may have a staff person of the sponsoring agency.
survival. An independent group that is well-estab-
This article lists the pros and cons of each model.
lished has a better chance of continuing to promote its
own goals in the long nm.
The Sponsored Group
One disadvantage of independence is that it may
be more difficult for an independent group to get
The advantages for a group that is sponsored by
started. More people will have to do more work
(and perhaps even begun by) a larger organization are
before the first meeting can be held. Another disad-
that finding things like a place to meet, a way to mail
vantage is that if the advisor leaves, the group may be
notices to members, and advisors are generally less
be
more likely to stop meeting. A third problem may
difficult than if a group is independent. The sponsor-
that the group may not have an easy time forming
ing organization may also have knowledge and
connections to the service system and the parent and
resources that can help the group to grow and learn
advocacy organizations if it is independent.
about self-advocacy.
Some independent groups have stopped meeting
The disadvantages are that the group may have
as a result of the problems listed above. But many
less opportunity to make its own decisions, to develop
other groups have worked through these problems and
the skills of self-advocacy, to learn about the rights of
are pleased that they are independent. The members
people with disabilities, and to apply for funding in its
of many independent groups have formed good ties to
own right than if it were independent. There have
other community organizations, to parent and advo-
been instances where sponsoring organizations steered
cacy groups, and to state legislators and other offi-
groups toward social activities, away from Exontrover-
sial issues, and away from real self-determination.
cials.
The groups that are independent feel that the path
There have been instances where the sponsoring
they've taken is the best way for a group to grow and
organization feels it can do a better job of speaking for
become strong. But, they do recognize that the groups
the people in the group than they can do for them-
that are sponsored by other organizations have
selves. In a few cases, groups have left the sponsoring
strengths and are a viable part of the self-advocacy
organization because of conflict over these issues.
movement, as well.
Even if the sponsoring organization does not try to
control a group or get into conflict with its members,
Bonnie Shoultz is the Associate Director for Training and
it would be rare indeed for a sponsoring organization
Information at the Center on Human Policy, Syracuse
to put the interests of the self-advocacy group at the
University, 724 Comstock Ave., Syracuse, NY 13244-4230.
8
8 Self-Advocacy Issues
Who Can Teach Change Better?
by Beatrice Roth
In the early days when first asked to be a chapter
background to freely speak out about what's hidden
advisor with Speaking for Ourselves, finding guidance
inside. But it's important for others to hear and
material on my role was almost impossible. I was
understand the effect of their often unintended wdons
told, "Your members and your heart will teach you."
that hurt. The story needs to be told. Again, the
How true, and the lessons began immediately.
advisor's part is that of a student learning from a
As a guest observing my third monthly meeting of
teacher, our members, who can best instruct from self
the group, the President once again welcomed me and
knowledge. Their insight gleaned through life's
expressed appreciation at my interest. Before fully
heartaches is the best teaching tool in bringing about
understanding what was happening, I found that I had
change. An encompassing circle of experience,
been nominated and voted in as a chapter advisor. I
learning, educating, and support is shared by members
and advisors alike.
To "assist" often meant to take over and
One way the story is told is as members speak out
do it myself. I learned that an advisor
on issues dear to them during the annual Speaking for
Ourselves Conference. This event, planned, executed
does not take over.
and presented from start to finish by Speaking for
know now that this was the start of a whole new way
Ourselves members, is directed toward educating the
of thinking, a way of reacting, or better still, not
world at large, parents, professionals and staff, on
reacting.
issues such as real jobs, community integration, and
To assist others, to step in and help, had been
instilled in me since childhood. But, to "assist" often
..the advisor's part is that of a student
meant to take over and do it myself. I learned that an
learning from a teacher, our members, who
advisor does not take over. An advisor supports and is
can best instruct from self knowledge.
a friend. The leadership role belongs to the members.
For example, my natural tendency is to push my
awareness of the many capabilities individuals with
own opinion of who's best suited for chapter officers,
which ate elected on a yearly basis. But, time has developmental disabilities offer to today's society. An
event of this size is only successfully accomplished
taught that an advisor listens first to what members
through the dedication, systematic planning, and
have to say. Their finger is on the pulse of what is
teamwork of members ftom all chapters. Throughout
best for them. Those with top leadership abilities have
already taken the foreground over the previous year this, the advisor is a strengthening backer, an affirm-
ing friend, providing transportation, paperwork and
and members have an instinctive knowledge of who
support backup. But, most important is the vital role
can best represent the group.
When an individual speaks out on his or her own
of encouragement, being there when needed to prompt
behalf, the message is from deep within. Who better
someone to take that scary next step.
knows what needs to be changed? Who can better
To me, my friends at Speaking for Ourselves
inspire me to greater heights in life. It's why being an
describe the pain experienced and the frustration of
advisor is one of the greatest enjoyments of my life,
unanswered needs? Who more has felt the effects of
just rubbing elbows with so many wonderfully coura-
people ignoring their simple entreaties for everyday
wants and desires? Individuals need only to be geous and determined people. It's a two-way street
encouraged to step forward and speak out. Expressing
where each learns and each teaches, where all of us
reassuring faith in our members as individuals, explor- together in Speaking for Ourselves educate those in
the world around us in the ways to a better life not just
ing options, affirming abilities, is a vitally important
role of an advisor. It can't be faked. It starts with
for individuals with disabilities, but for us all.
listening as a true friend, prompting someone who has
Beatrice Roth is Advisor for the Montgomery County
been devalued by society to expose their wounds, to
Chapter of Speaking for Ourselves, in Montgomery county,
trust you, to believe in him/herself. It's not easy for
Pennsylvania. Telephone: [phone].
people that have been repressed and relegated to the
9
Self-Advocacy Issues 9
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Life, continued from page 1
someone else as it was for me to set it up. The
important thing you have to remember is that you
plan. I wanted to make my owr decisions. I made it
should be involved in every aspect from start to finish.
very clear that when it was time to leave the program,
You, the individual, must have the supports built
I could just go, no strings or questions asked.
around you, and not be made to fit into a program that
As time went on, the coordinator of the Family
wasn't designed just for you. This is true regardless
Care program met with John and me. I told her what I
of how seven your disabilities are. It's very impotant
wanted in terms of supports and a home. Part of her
that you have the say about how your wants and needs
job is to help us find a place. The exciting part is that
are dealt with.
we have a friend who used to work for the agency
If you work at an agency, I would hope that you
who is into buying real estate. One day I was kidding
would go along with the individual on how he or she
with her and said, "Why don't you buy a house that
wants to live. You don't have to agree, but they have
would be easily accessible and I would rent it from
the right to live like anyone else.
you?" About a week later she told me she had bought
I've lived on my own for the last two years.
a house! At first I thought she was kidding, but then
Through this period John and I have talked about
when she took me and John over to see it I knew she
moving down south. We both like the South for a
was serious. We called the coordinator on the phone.
number of reasons. One is that we both have family
John and I then started meeting with her on a
down there, and they have been asking us to move
regular basis. It was actually pretty easy to set up the
down there for quite a while. The most important
supports I would need, like physical therapy and my
reason is that ooth John and I felt we needed a change
orthopedic doctor, because I could just take what I had
in our lives, we needed something new, and we
from the apartment and transfer them to my new
needed to move on. So, we are moving to a town near
house. The supports I didn't have at the apartment
Atlanta, Georgia. I am very excited about this move.
were just added on. For example, I had to arrange
attendant care with one of the agencies in town.
Michael Kennedy was formerly the Self-Advocacy Coordi-
Medicaid would pay for all of this when I was on my
nator at the Center on Human Policy at Syracuse Univer-
own because I kept my Medicaid eligibility.
sity, and is currently a consultant to the Center.
Always keep in mind that it may not be as easy for
1 0