(Download Acrobat Reader)Self Advocacy For Self Advocates: A
Leadership Guide
By Jeff Saucier, Alan Kurtz, Debbie Gilmer and
Members of Speaking Up for Us,
Maine's Self Advocacy Network
June, 1996
(c) 1996 All Rights Reserved
Self Advocacy For Self Advocates: A Leadership Guide
Self Advocacy For Self Advocates: A Leadership Guide
is available in PDF
(Download Acrobat Reader)
This publication is available on audiotape and, upon request,
will be made available in other alternative formats to
accommodate the needs of individuals with disabilities.
A limited number of copies of this material in color slides and
overheads are available for loan. Please call for more
information: (207) 581-1084 voice or (207) 581-3328 TDD
In complying with the letter and spirit of applicable laws and in
pursing its own goals of pluralism, the University of Maine shall
not discriminate on the grounds of race, color, religion, sex,
sexual orientation, national origin or citizenship status, age,
disability or veterans status in employment, education, and all
other areas of the University. The University will provide
reasonable accommodations to qualified individuals with
disabilities upon request.
Acknowledgments
This manual is the result of a three year project designed to
assist Maine citizens with mental retardation to create self
advocacy networks throughout the state. Our sincere appreciation
goes to all the people across Maine who taught us how very
important it is to listen to and honor people's wishes and
dreams.
We also thank the Maine Developmental Disabilities Council, the
Maine Department of Mental Health, Mental Retardation and
Substance Abuse Services, and the Administration on Developmental
Disabilities, U.S. Department of Health & Human Services, for
providing funding to support the creation of the statewide
network, "Speaking Up for Us."
Table of Contents
Chapter One: What Is Self Advocacy: Voices Of Maine's Self
Advocates
Chapter Two: What Maine's Self Advocates Say They Want
Chapter Three: One Self Advocate's Story: Jeff And His Experience
With Speaking Up For Himself
Chapter Four: How Self Advocacy Can Help You Realize Your Dreams
Chapter Five: What Self Advocates Ask For From Families, Friends
And Supporters
Introduction
This guide is designed to assist self advocacy leaders to teach
self advocates and others about self advocacy. The words come
directly from people with mental retardation who have
participated in self advocacy leadership education in Maine
during the past three years. These individuals, with their
committed advisors and Laurie Kimball, Project Coordinator, have
demonstrated the power of self advocacy to make real changes in
people's lives.
Chapter One
What Is Self Advocacy?
Voices Of Maine's Self Advocates
Self Advocacy Means...
...making your own choices
...supporting one another
...being your own boss
...setting goals for yourself
...talking about your dreams
...helping other self advocates
...having control
...standing up for yourself
Chapter Two
What Maine's Self Advocates Say They Want
Self Advocates Want...
...to close all institutions
...real homes and apartments of their own
...real work for real money
...job benefits like vacation and sick time
...respect
...to get where they want, when they want
...friends, relationships, and families
...people to have high expectations of them
...more independence
...people to see beyond labels
...to know and understand their rights
...equal rights
Chapter Three
One Self Advocate's Story:
Jeff And His Experience With Speaking Up For Himself
My Early Life
_ I was born August 19, 1961 at Loring Airforce Base in Maine.
_ I grew up in Caribou, Maine.
_ I had 7 brothers and 2 sisters. David died when he was a little
baby.
Going To School
_ I went to Opportunity Training Center at age ten because I
couldn't read too well.
_ I studied math, alphabet, speech, reading, and writing. I also
cooked, cleaned, and exercised.
At Home
_ I helped mom with cooking, dish washing, shopping, vacuuming,
mowing the lawn, shoveling snow, burning trash, and bringing
clothes off line.
_ I visited Uncle Frank, Aunt Laura, Aunt Dot, and Aunt Betty.
_ In 1976 I fell and broke my leg.
_ Sometimes I got sick. I started having seizures about 1976.
_ My brothers baby sat me.
_ In 1991 my father died and in 1993 my Mother died.
Leaving Home
_ I lived in four foster homes after mom died.
_ I got angry - I was not sure why. I got kicked out. I missed my
mom. I was very sad and was not allowed to talk about it.
_ I was moved to ARC.
Things I Liked About Aroostook Residential Center (ARC)
_ They helped me pack when I went on trips.
_ They helped me when I was sick.
_ Friends who still live there.
_ Camping in the summer.
Things I Didn't Like About ARC
_ Being restrained.
_ The food - sometimes.
_ Fire drills.
_ Staff shutting the office door in my face.
_ Too much noise.
_ Punishment when I ran away.
My Day Program At Work Opportunity Center
_ I recycled paper.
_ I did yard work.
_ I made tiles from clay.
_ I used to strip furniture but it had too many chemicals.
_ I also did silk screen printing.
and then.....
Self Advocacy
_ Debbie Haines signed me up in 1992.
_ I joined the Presque Isle Peer Group.
_ We talked about different disabilities.
_ We went camping at Roy Michard's.
_ I made good friends.
Self Advocacy
_ I went to meetings in Bangor, Augusta, Orono, Portland, Sunday
River and the TASH New England Conference in Connecticut.
_ I made lots of friends around the state - like Paige.
_ Self advocacy helped me get on the State Independent Living
Council.
_ It helped me learn to speak in groups and in front of people.
_ The Presque Isle Peer Group wrote letters to the Commissioner
to get me out of ARC.
_ Thanks to self advocacy, I now have a new home. I have my own
apartment in the new house my friends' Alan and Jay bought in
Bangor.
_ I spoke up for myself and my friends helped me out!
_ Now I make choices for myself and I am in control of my life.
_ I interview and hire my own staff.
_ I decide what to eat.
_ I decide what I do and my staff supports me to do what I want.
_ I have learned how to use the computer and helped put this book
together.
Chapter Four
How Self Advocacy Can Help You Realize Your Dreams
Self Advocacy Can Help You Get the Things You Want
_ Did you know that you can choose where to live? Jeff wanted a
new place to live and now has a new home.
_ Are you living where you want?
Self Advocacy Can Help You Learn About Your Rights
_ Did you know that you have the right to decide who provides you
supports? Julie learned that through self advocacy.
_ Judy learned that she has the right to request information on
tape.
_ Do you know your rights?
Self Advocacy Can Help You Learn New Things
_ Did you know that self advocacy can help you learn more about
things you are interested in? Dan and Jeff help each other and
have taught each other to cook better.
_ Who can help you learn about something you are interested in?
Self Advocacy Can Help You With Problems
_ Self Advocacy groups include friends with whom you can discuss
and solve problems.
_ Eugene and his friends have gotten their town to make the
railroad tracks accessible.
_ Do you have a problem you would like some help to solve?
Self Advocacy Can Help You Stand Up For Yourself and Your Friends
_ Julie helps students on the Transition Council by standing up
for their right to get diplomas.
_ Judy helps others by being on the Maine Disabilities Coalition.
_ Ruth always wanted to be her own guardian. She spoke up and now
she is.
Self Advocacy Can Help You Achieve Your Dreams
_ Jeff, Ruth, Julie and Judy have begun to realize their dreams.
_ What do you wish for?
_ Dan wants to hire a chauffeur if he wins the Megabucks!
Chapter Five
What Self Advocates Ask For From Families, Friends And Supporters
Encourage My Dreams
_ Timmie and Brenda dreamed about owning their own home. Now they
own a home where they have a dog, some birds, and a guinea pig.
_ They dreamed of having a car, too.
Listen To Me
_ I have lots to share, please listen.
_ Hundreds of people listened to Jeff and Danny talk about
self-advocacy on the radio. They talked about their dreams, their
choices, and being their own boss.
Offer Me Transportation
_ Make sure that I can get where I want, when I want.
_ Offer me a ride.
_ Help me find other people who might give me a ride.
_ Teach me to drive.
Don't Use Labels
_ Don't categorize me because I have a disability.
_ Treat me as an individual.
_ Talk to me like you would a friend.
Explain Things to Me
_ There are many things I can do if people take the time to
explain them.
_ Liesel works in an office. Debbie explains how to use the copy
machine.
Support Me to Take Risks
_ Help me to learn by supporting me to do challenging things.
_ Timmie got help from friends who taught him to drive.
_ Now Timmie can go where he wants in the car he and Brenda own.
Get To Know Me
_ Spend time with me to get to know me.
_ Let me tell you about myself.
_ Ask me questions about important things.
_ Ask me for help if you don't understand me.
Help Me To Read, Write, And Understand
_ I may need help to read and write because I was never taught to
in school.
_ I may need help to understand things.
_ Lanny talks to others by typing on a computer. Lanny's friend
Debbie helps him with his spelling and his typing.
Have Fun With Me
_ Let's do FUN things together!
_ Jay likes canoeing.
_ His friend Mary likes canoeing, too.
_ Mary and Jay have fun doing something they enjoy together.