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ED 336 914 

EC 300 646 





snouitz, Bonnie; And Others 

Materials on Self -Determination. Se If -Advocacy : 
Speaking for Yourself and Annotated Bibliography on 
Self -Determination . 

Syracuse U.iiv., NY. Center on Human Policy. 
National Inst, on DisalDiiity and Rehabilitation 
Research (ED/OSERS), Washington, DC. 
Nov 90 


Syracuse University, Center on Human Policy/ 200 
Huntington Hall, Syracuse, NY 13244-2340 ($1.30). 
Reports - Descriptive (141) — Reference Materials - 
Bibliographies (131) 



MFOl/PCOl Plus Postage. 

• Advocacy? ^Developmental Disabilities; *^ Independent 
Living; Personal Autonomy; *Self Determination; 
*Social Support Groups 
•Self Advocacy 


This compilation of materials offers an overview 
paper and an annotated bibliography on self-determination. The 
overview paper on self-advocacy for individuals with developmental 
disabilities, aut.hored by Michael Kennedy and Patricia Killius, 
presents a defin.^tion of self -advocacy , notes that poor communication 
skills should not prevent an individual from participating in 
community living, emphasizes that self-advocacy means having choices 
and having a say about services, and presents guidelines for starting 
a self-advocacy group. An annotated bibliography on 
self-determination describes 13 articles, journals, books, and other 
resources. (JDD) 

w Reproductions supplied by EDRS are the best that can be made 
* from the original document. 


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Prepared by: 

Bonnie Shoultz, Michael Kennedy, and Nirmala Erevelles 
Center on Human Policy 
Syracuse University 
200 Huntington Hali, 2nd Floor 
Syracuse, NY 13244-2340 
(315) 443-3851 

November 1990 



by Michael Kennedy & Patricia Killius 

Annotated Bibtioaraphv on Self-Determination: Articles, journals books and 

other resources on self-determination. 

Prepartiofi of this information package was supported in part by the U.S. Department 
of Education, Office of Special Education ana Rehabilitative Services, National Institute 
on Disability and Rehabilitation Research (NIDRR) under Cooperative Agreement No. 
H133B00003-90 awarded to the Center on Human Policy, Division of Special Education 
and Rehabilitation, School of Education. Syracuse University. The opinions express 
herein are solely those of the authors and no endorseme.'rit by NIDRR should be 



EST COPY hmmii 


bv Michael Kennedy & Patricia Killias 
(Recorded and Edited 
by Deborah Olson, 1986) 

As self-advocacy coordinators at the Center 
on Human Policy, we speak to professionals, 
parents, and the general public to tell them that 
disabled people have rights. We want them to 
know that we can make decisions and speak out 
for ourselves. 

We also teach people with developmental 
disabilities and mental retardation that they have 
ihe right to self-determination and to live as 
independently as is possible for them. Both of us 
H\cd in institutions for years, so we know what it\s 
like U)T others. 

One way we do llus is to facilitate 
self-advocacy groups. In these groups, people like 
ourselves learn to speak out for themselves. 
People \uth all kinds oi disabuilics particif.alc in 
I he groups. Some of them still live in the 
institution, but most live in group homes, 
supportive apartments, wlh families and even 

In July, 1985. we held the first New York 
SlMlc conference of self-advocacy for people with 
developmental disabilities. The Purpose was to 
eive people with developmental disabilities the 
chance to speak out about their rights and the 
things they want to see changed. We also wanted 
prolessionals to see that we have a voice of our 
own. We want the same rights as everyone else. 
Nothing more, nothing less, 


Self-advocacy mean.s people with 
developmental disabilities; speaking up and 
speaking out for their rights. For people who 
ean't speak, it may mean having someone 
interpret what you want to say. People with 
developmental disabilities should have the right to 
speak up and teach other people about their 
rights. We wonH always have someone to kxik 
out for us. 

People need to listen to what wc want even 
lliough they might not want to. Speaking out can 
be takmg a risk. Sometimes you're afraid a staff 
person might say no. 

Some People Can't Sp?a k for Themseives 

Some people can't talk or communicate 
easily with others. Other people may be really shy 
or uncomfortable talking. This shouldn't mean 
thcv can't be part of cvrrvday life. Someone with 
a severe dii>.ibility can still live a good life in the 
community even though they can't express 
themselves very well or communicate thei'^ wants 
clearly. They may need a friend who can speak 
for them. The best spokesperson for someone 
who can't speak may be another person with a 
disability who can speak, maybe a friend of that 
person- Another disabled person knave's where 
that person is coming from; they've had similar 
experiences. Professionals may say they 
understand, but in reality they haven't lived as we 
have and haven't had the same exT>erience. 

MIKE: Ted and I were in ihe same 
institution together many years ago. When 
we met again recently I could sliil 
understand him, even though he has really 
difficult speech and it's hard for other 
people to understand him, 

PAT; IZven for someone who can't s{)eak al 
ail, another person who's disabled is still a 
good spokesperson just because you know 
what it is like to be a consumer or lo live in 
an institution. 

S e!f>Advocacv is Ahont Ifavinii C hoict^ s 

Lining in the institution you don't have the 
freedom to make choices. You arc inid what to 
do, for example, when to eat, when to sleep and 
when to get ready for work. 

You have no choice about going places \s hen 
ihc whole umi is going someplace. You can't go 
out on your own. 

MIKE: Now { can do things wuh oiher 
people or by myself if that's vshai 1 wani. At 
least 1 have a choice. 

Self-advocacy, or speaking for yoursell, is a 
big part of living in the community. People \Mth 
disabilities who live in the community should have 
the right to make their owti decisions, just like 
anyone else. For example, we should have the 
choice of who we want to work for us. In our 
apartment, the director will interview a person 
who wants to work with us. Then she svill bring 
them to the apartment and have us interview liie 
person. We ask things like, "Have you ever 
worked with disabled people before?'* "What kind 


of recreational things do you like to do?" We ask 
[his so that we can gel a good idea of what ihcy 
like to do and if we like the same thing. We also 
ask how they feel about transferring someone 
from one chair to another. We ask to get an idea 
of how they feel about being with us. 

After these questions, the person asks 
questions of us. We'll give them answers about 
where wc work and what we do. 

The following day wc together with the 
director and talk about that person. She takes our 
ideas to the board of the agency and the board 
usually approves who wc recommend for hiring. 

The choices you should have arc choosing 
vour own friends and having your friends come to 
see you, going to the church of your choice when 
you want to go, deciding whether to have a real 
job instead of working in a sheltered workshop or 
acti\*itv center, and lots of other choices. 
Sometimes people with developmental disabilities 
need help making choices, or even knowing what 
their options are. Tarenls, sial'f, and friends can 
help people learn about choosing, if they pay 
atienlion to the person. 

St'll' Advocacy Means Mavinu a Sav Ahout ^'our 

People with developmental disabilities can 
jnd should have an impact on ser\ices by 
participating in agency boards and councils. It's 
imporiant that we share our ideas because we use 
some of the .services. Many of us have been 
eelting services from agencies all our lives. We 
know I hat some services are good because ihey try 
[o meet our individual needs. We also recognize 
that some services arc bad because they don^t 
integrate people i.i the community and they don t 
provide programs to help us become more 
independent. We can tell agencies what kind of 
ihinus we need to live and grow in the community. 
But ifs not enough to have one consumer on 
J i)oard. If there are several with different 
disabilities or different experiences, providers will 
know more about your needs. 

When wc first got our self-advocacy jobs a lot 
of agencies asked us to be on their boards. They 
didn^L seem to be aware of other people with 
disabilities who could also speak on their 

PAT: The same two consumers shouldn't be 
on all the boards in the commun iy, because 

they're going to get tired of hearing from us. 
There are other consumers who would learn 
a lot from the experience and also contribute 
to the board. 

People with dLsabilities might need special 
supports to be on a board. For example wc might 
need aides to help us get to the meeting, to help 
us with personal needs, for writing and reading, 
for speaking for someone who can't speak or 
interpreting for someone who can't hear. It's 
important to have this support so that wc can 
panicipate on the board. Without this support 
we're just a token. 

Iveaminp .About Self-Advocacv 

All disabled people have the right t(^ learn lo 
speak for themselves. It*s important because 
there will be a day when our parents won't be 
able to speak for us. Disabled people can teach 
each other how to speak for themselves. 
Role-plaving a variety of problems or situations i> 
a good way to learn self-advocacy. 

There's more strength in formmg a group. 
One individual speaking out is easily over-looked. 
If you have a group of people who want the same 
thing, you have a better chance of people 

This L> what we did in Syracuse. Wc drew 
up a list of friends and other pct^ple we knew. 
We told them about seif-advocacv and asked then: 
if they wanted to become involved. That's how wc 
got started. 

We bramstormed some issues and talked 
about issues at every meeting. For example, we 
talked about transportation problems and 

To teach ourselves about our rights we used 
a tool called Rights Now! It contains cassettes, 
pictures and a slide show about different people i:: 
situations learning about self-advocacy. For 
instance, finding meaningful work instead of 
sheltered employment, finding time to be alone 
with your friends, or working out compromises 
with the people you live with. Rights Now! is noi 
available any more, but you might be able to gel ii 
from your state's Protection and Advocacy agency, 

Wavs to Start a Group 

Wc started our groups through the College 
for Li\ing, but not everybody has to do it the 
same way. There are many ways to start a grouj). 


First, you have to find a good place to meet. It 
should be easy for everyone to get to it. Then you 
have to make a list of people to be a part of the 
group. It's OK to start small. You have to let 
people know about the meeting cither by calling 
them or seeing them at work or where you live. 
You have to agree on a meeting date and time 
that would be good for everybody. 

When you have your first meeting, you have 
to be sure that everyone feels comfortable. You 
should have people introduce themselves and 
maybe say why they wanted to learn about 
self- advocacy. You may have to explain about 
scif-advocacy first. If you decide to use the Rights 
Now! material, you'll have to tell them about the 
cassettes and pictures. Or you could show a fdm, 
like the People First film, or a slide show, like 
Our Voice Is New (which we helped produce) 
about self-advocacy. After the film or slides you 
can talk about some of the issues, like speaking 
out, having someone speak for you if you can't 
speak well, or what it fccLs like to be labeled 
menially retarded. 

We and the people in our group think that it 
is good to form a group because: 

1. People aren't always going to be around lo 
make decisions for you, you have to learn to 
make your i)wn decisions. 

2. You can learn about each olher, everyone 
has different need.s. 

3. ^ ou can work together for new opportunities 
for people with c Mlitles. 

4. "t'ou can learn aiH)ul your rights as a cili/en. 

5. You can help other people who can t speak. 

(). You can have fun by meeting other people. 

By speaking for yourself you make olher 
people-group home staff, government officials, 
and the general public, see that you are a person 
just like them, not a '^disability." Self-advocac\' is a 
part of living in the community. Without it we 
might as well be shoved back into the institution. 


The fundamental right of speaking for oneself has long been denied to people with 
disabilities, who have usually had decisions made for them about every detail of their 
lives. They were, in other words, taught dependence. In the past twenty years, 
however, people with disabilities have organized movements (e.g., the self -advocacy 
movement, the independent living movement, the "psychiatric sun/ivors" movement) 
that prove that that people upon whom dependence was imposed can and must speak 
for themselves and determine their own futures. An exciting recent development has 
been that the leaders and members of the different movements are talking to and 
including each other, recognizing the commonalities between them and the issues they 

The materials in this section emphasize the self-advocacy movement, which was 
organized by and for people with developmental disabilities, but the section includes 
materials produced by other groups as well. 

TITLE; Learning about self-advocacy series 

AUTHOR: Crawley, B., Mills, J., Wertheimer. A.. Whittaker, A., Williams, P.. & 
Billis, J. 


Campaign for Valued Futures with 

People Who Have Learning Difficulties 
12A Maddox Street 
London, W1R9PL 

Telephone: 01-491-0727 

What is particularly important about self-advocacy is that it enables the 
empowerment of individuals who have been always spoken for. This five volume guide 
does this very effectively. Each of the five volumes begins with a "How to Use This 
Book" chapter. In this chapter, the authors encourage the individuals to use the book 
merely as support to the formation of their self-advocacy group, suggesting that the 
books be used based on the group's specific needs and to find answers to their 
specific problems. 

Each of these books deals with an interesting array of topics. The first book 
discusses the meaning of self-advocacy and its uses and helps to create an 
awareness of an individual's rights and responsibilities in a free society. The other 
books deal with some of the issues of setting up an advocacy group and the 
organizational guidelines that are necessary for its efficient functioning. There are also 
suggestions on networking with other groups and on dealing with issues of publicity. 


One of the most important features of the last book is that is highlights particular skills 
in areas that facilitate group dynamics like communication, listening, being assertive, 

A particularly strong feature of this set of books is the simple language that is used 
to communicate its intent. Another strength is that it emphasizes that it is alright to ask 
people for help if one needs it, and offers a section on how to choose an advisor for 
the group who will not lead but empower. Each section in each book has a number of 
exercises and summaries of the important points. Also provided are a list of resources 
that could be used to complement the texts. In terms of a book that offers good 
suggestions, without being didactic, this book scores high. 

TITLE: Charting a bold course: A self-advocacy curriculum 

AUTHOR: DeMerit, K. S., Halter, P. L, Jauron. G., Jirovetz, L., & Kruege*, M. 


Brown County Citizen Advocacy Program 
Brown Association for Retarded Citizens 
1675 Dousman, P.O. Box 10565 
Green Bay, Wl 54307-0567 

This curriculum seeks to document some of the skills a self-advocate needs to 
possess in order to make informed vocational choices. In particular, this manual 
assists the individual in the decision making process, in using one's own value system 
to set realistic goals that are compatible with the professed values. 

The curriculum is designed for a 12-week period of two sessions per week. There 
are several sessions that deal with specific goals. The first two sessions are intended 
to develop self-confidence and assist in strategies of self-assessment. This is followed 
by two more sessions on values clarification where individuals are encouraged to 
identify and prioritize personal values in order to make sound and reasonable value 
choices. Skills in decision making that call on reason rather than impulse or emotion 
are also included. The curriculum also deals with employment skills, confidence 
building in the face of interviews and answers questions on the "how's," "why's," and 
'when's" of both supported and community employment. 

Looking at the comprehensive list of skills it endeavors to impart, this book does 
prove to be very useful. Not only does it provide session plans, it also includes 
handouts and questionnaires that complement the sessions. However, this book is 
very instructor-oriented and preserves in its own subtle way the service model. People 
using the book might want to pick and choose so as to de-emphasize this orientation, 


TITLE: The last civil rights movement: Disabled People's International 

AUTHOR: Driedger, D. 


St, Martin's Press, Inc. 
175 Fifth Avenue 
New York, NY 10010 

The disability' movement appears to be the last of the social movements of the 20th 
century. At least this is the claim made by Driedger In this book. Based on interviews, 
reports, letters and documents by those involved in Disabled People's international, 
Driedger argues that people with disabilities have a distinctive history that cannot be in 
accordance with viewing them as clientr., patients or deviants dealt with by 

Driedger articulates what the Disabled People's International (DPI) defines as a 
disability: the inability of the social environment in the community to accommodate to 
the needs of people who have limitations. She also points out that historically people 
with disabilities had little to say in any of the policies that are affecting their lives. In 
light of these philosophies, DPI was born as an organization "of" handicapped 
individuals rather than an organization "for" handicapped individuals. The book goes 
on to describe the history of DPI, the early years of struggle to get to be a group, and 

its goals and objectives. 

One of the particularly redeeming features of this book is that it frankly voices the 
difficulties faced by an organization that claims to represent people with disabilities 
internationally. It lists the power politics among the "old boys" in the group, the elitism 
that often develops in leadership and the omission of people who are not powerful ana 
who may have a voice in decision making. Of particular im.portance was the issue of 
people with disabilities in developing countries whose extreme poverty and lack of 
resources often prevented them from participating in DPI sponsored events. Also 
mentioned are difficulties, political and otherwise, that affect an organization of 
international difiiensions. 

This book has inherent value in that it attempts a realistic portrayal of a self- 
advocacy organization with its warts and all. It also very effectively places the field of 
disability in the context of a social movement that can effect social change in the field 
of today. 

TITLE: How to be an effective board member: Manual for self-advocates, manual 
for facilitators 

AUTHOR: Eddy. B. A., Cohen, G. J.. & Rinck, C. 


University of Missouri-Kansas City 
Institute for Human Development 
2220 Holmes, Room 321 
Kansas City, MO 64108 

These two manuals are valuable additions to the sparse literature on how self- 
advocates can be effective as board members. The materials in these two manuals 
can be used to train self-advocates, or can be used directly by self-advocates who can 
read. The manual for self-advocates contains many drawings and pictures illustrating 
the text, which describes meetings, rules, board members' rights and duties (e.g. the 
right to ask for clarification, the right to voice an opinion, the duty to maintain order 
and sometimes confidentiality, etc.), and presents samples of board orientation 
materials. While the examples used are based on Kansas City or Missouri services 
and boards, the manuals would be useful to people in other states. 

TITLE: We are People First: Our handicaps are secondary 

AUTHOR: Edwards. J. P. 


Ednick. Inc. 
Box 3612 

Portland, OR 97208 

What happens when a group of former institution residents v^ho are tired of being 
misrepresented and devalued decided to do something about this? They form a self- 
advocacy group: People First. We are People First describes the origin of the 
movement and its philosophy. 

"People First" was started on January 8, 1974. Since then it has grown into a 
movement that has effectively articulated the needs of its members, The organization 
thus affords a chance to members to practice self-advocacy and self-assertion skills. 
A section of the book describes the early years, the difficulties, the conventions that 
were organized and the slow but steady growth of the organization into one of 
international dimensions. Some of the themes deemed important were the 
appreciation of help, the need and value for friends, pride in one's accomplishments 


and the neqative effects ot labeling. A section also describes how the members 
consider the role of the helper, a theme that today's self-advocates and professionals 
are still arguing about. 

This book makes fascinating reading. It describes how individuals who were 
formerly dismissed as nobodies and interred in institutions have managed to fight back 
and articulate a strong message. Behind the obscuring handicap, is a person with 
dynamism and a vision to effect change. 

TITLE: The self-advocacy workbook 

AUTHOR: Gardner, N. E. S. 


Technical Assistance for Seif-Advocacy Project 
Kansas Center for Mental Retardation and 

Human Development UAF 
University of Kansas 
Lawrence, KS 66045 

This workbook provides a framework for learning about self-advocacy, organizing 
a group, and undertaking group action 1 deal with issues of common concern. The 
materials are specifically geared for use by a group. Each chapter attempts to focus 
on only one discrete aspect of organizing. Also, the structure of each presentation is 
the same throughout in order to minimize any problems the group might have with the 
management of their meetings. 

TITLE; Changing ourselves and our community: Report of a leadership 
development process with a self-help group in mental health 

AUTHOR: Lord, J. 


Family and Friends 

Mental Health/Waterloo Region 

179 King Street, South 

Waterloo, ON N2J 1P7 



Centre for Research and Education 

in the Human Services 
P.O. Box 3036, Station C 
Kitchener, ON N2G 4R5 

mat leadership is innportant in self-help groups is undeniable. This book is an 
attempt to document a process of change for any self-help group. The purpose of this 
report is to highlight the unique nature of the 'eadership development process with a 
self-help group in mental health and also to raise questions, outline resources and 
suggest ideas useful to other groups concerned about change. Care has been taken 
to highlight that this is a "specific process" from which a linkage to "general principles" 
and issues can be made. 

The report deals with the purpose of having self-help groups and the importance of 
creating a context where members can gain skills and knowledge and expand people's 
awareness of values, strategies and processes which would be helpful in impacting on 
mental health issues. There are also sessions included where members can be 
involved in planning and implementation through role playing, sharing and examining 
individual needs. Further, this book explores the process of change in the group ana 
in the community in terms of identifying issues that need resolving and utilizing 
problem solving skills to address these issues. 

TITLE: Whatever you decide 

AUTHOR; Mohr, J. 


Available from author: 
Jennifer Mohr Johnson 
238 Hampton Drive 
Venice, OA 90291 

Decision making is one isshe that needs to be addressed when organizing a seif- 
help group. This book is an example in this endeavor, in that it helps consumers be 
better prepared in the practice of decision making. This book is aimed at staff, 
educators and advocates and is geared to meet the needs of people at differing levels 
of comprehension. 

The book first addresses the issue of the importance of teaching decision making 
skills. It also offers suggestions for forming groups, and various ways of improving 
group dynamics. Suggestions on how to choose an advocate and lead group 
discussions are also offered. A number of sample lessons pertaining to each topic are 
offered. This proves a good book for both advocates and self-advocates in the field. 

! 1 

TITLE: Speaking up and speaking out: An international self-advocacy movement 

AUTHOR: People First of Washington, & Self-Advocacy Project, Rehabilitation 
Research and Training Center, University of Oregon 


Ednick Communications 
P.O. Box 3612 
Portland, OR 97208 

This self-advocacy booklet, perhaps the best resource on the various aspects of 
self-advocacy, is written for people with disabilities who have an interest in organizing 
or becoming part of a movement which advocates for their own rights and services. 
The roles of self-advocates and their advisors are clearly delineated in the booklet, but 
at the same time there is a recognition that each self-advocacy group will be unique. 

The format of the booklet covers the planning and events of an international self- 
advocacy conference which was held by a group called People First (of Washington 
State). The conference participants share their experiences with words and pictures, 
providing a knowledge base to future self-advocates. Included throughout the volume 
are personal excerpts on people's thoughts and activities. The chapters cover basic 
issues such as describing self-advocacy, starting and supporting a local group, 
expectations about advisors, learning about self-advocacy, evaluating services, starting 
and supporting a state/province-wide organization, and other critical issues. An 
excellent resource. 

TITLE: Self-determination 

AUTHOR: Perske, R. (Ed.) 


Institute on Community Integration 
6 Pattee Hall, University of Minnesota 
150 Pillsbury Drive, Southeast 
Minneapolis, Minnesota 55455 

This is a summary of the proceedings of a national conference on self- 
determination to which sixty people were invited by the Office of Special Education and 
Rehabilitative Services, U.S. Department of Education. Over half the planners have 
disabilities of one kind or another. This was a first: people with disabilities, parents, 
and close supporters being asked to draft specific recommendations fc;r federal 



officials regarding future directions for people with disabilities. This booklet presents 
their recommendations, some viewpoints of people at the meeting, and each of the 
keynote presentations. 

TITLE: How we lived and grew together: An interstate seminar o;^ ^elf-advocacy 
for persons with developmental disabilities 

AUTHOR: Perske, R., & Williams, R. 



Clarence York, President 
39 East 51st Street 
New York, NY 10022 

This is a report on thj proceedings of a conference on self-advocacy for people 
with development?.! disabilities. Some of the topics dealt with in this conference were 
the nature of meaningful work and participation in community activities, consumer 
empowerment and the effects of attitudes of the community and labelling by 
professionals of people with developmental disabilities. The booklet has several 
quotes from several government officials as well as from many program participants. 

TITLE; People with developmental disabilities speak out on quality of life: A 

statewide agenda for enhancing the quality of life of people with disabilities 

AUTHOR: Vivona, V., & Kaplan, D. 


World institute on Disability 
510 16th Street 
Oakland, CA 94612 
(415) 763-4100 

This booklet provides a description of the World Institute on Disability's Quality of 
Life Project, a project that culminated in a senes of conferences in which people with 
developmental disabilities discussed and made recommendations related to four areas 
working, living, loving, and playing. Their recommendations are incorporated in the 
booklet, as are several appendices that would be helpful to those wishing to put on 
similar conferences. 



TITLE: We can speak for ourselves: Self-advocacy for mentally handicapped 

AUTHOR: Williams, P., & Shoultz, B. 


Brookline Books 
P.O. Box 1046 
Cambridge. MA 0223S 
(617) 868-0360 

This book tells the story of People First of Oregon, Project 2 of Nebraska, and 
similar efforts in England where participants have been building the skills necessary to 
take charge of their own lives. The book offers practical advice and support for 
parents, human service workers, and others interested in assisting self-advocacy for 
mentally handicapped people. It includes detailed descriptions of several 
organizations, lists teaching materials, and presents personal accounts by participants 
in self-advocacy groups both in the United States and in England. This book is also a 
valuable resource to sensitize the direct sen/ice worker, the administrator, and the 
public official to the importance of self-advocacy.