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OHIO VOICES: LEARNING FROM FOUR SEASONS OF CONVERSATIONS ABOUT SELF-ADVOCACY

Learning from Four Seasons of Conversations about Self-Advocacy

Spring - Panel Discussion, Summer - A Gathering, Fall - Becoming an Advisor, Winter - Sourcebook

A Collection of Key Conversations, Activities and Reflections

Ohio Voices is published by Removing the Mask and developed through a grant from the Ohio Developmental Disabilities Council. All opinions are those of Removing the Mask and do not necessarily reflect those of Council.

How our project got its name...

"The masks of love and care can obscure the critical political issues of modernized societies; the necessity to manufacture needs in order to rationalize a service ecomony... It is clear, therefore, that "care" is a potent political symbol... Removing the mask of love shows us the face of servicers who need income, and an economic system that needs growth." - The Professional Service Business by John McKnight. Found in Social Policy, Nov/Dec. 1977

HOW YOU MIGHT USE THIS PUBLICATION

YOU MIGHT USE this publication.....

AS A WAY TO LEARN (if you were not at the events) or recall (if you were there) the words and ideas from conversations on self-advocacy sponsored by Removing the Mask.

AS A GUIDE for finding further information and ideas. Resources are listed in the winter section. You can add your own and ask your friends for additional ideas.

AS A WAY TO BEGIN to engage in new activities that carry the ideas forward. Talk about the questions in this book with a friend or with your group. Use the spaces to write words, draw pictures, or paste pictures or photographs.

AS A SOURCE OF INSPIRATION. People whose words guide us and light our way can be a source of inspiration. Consider creative ways to share the poetry found in the summer section. Set the words to music. Add interpretive movement or sounds. Share this in ways that will inspire others.

AS A STIMULUS FOR FURTHER REFLECTION. The ideas, information, and quotations in this publication are a beginning. They need our continued individual and collective reflection.

ACKNOWLEDGEMENTS

We have named this publication "Ohio Voices" out of gratitude to the many who gave voice to their lives and spoke so that we could learn together. We thank those who came to our project events, invited us into their homes and shared their lives. Your companionship has blessed our journey.

Certain individuals were particularly generous with the contribution of their time and talent to the events that form the "seasons" of this publication.

For the spring "Panel discussion" we wish to thank Melody Brauninger, Brian Welty, David Long, Deb Schmieding, Barb McKenzie, John Hannah, Stella Gola, and Kelley Allen. Your words that day compelled us to continue the conversations and inspired the subsequent events.

For the "Summer Gathering" we are indebted to the one hundred people whose voices we quote in this publication. We are grateful, as always to John O'Brien who facilitated this event and provided relentless encouragement to see this publication come to life.

For the fall session on "Becoming an Advisor" we are indebted to Deb Schmieding, Jill Wallace, and David Hartinger and to their self-advocacy group: People First of Athens County. They shaped a day of experience and reflection for participants that allow us all to benefit from their years of learning.

Many others participated in making the events possible. Deb McCuin and the leadership of People First of Ohio supported the events with their thoughtful participation. Countless others made arrangements for people to come, drove vans, left home early, and came home late. We know who you are and--we thank you.

We thank our friends that we tortured with the many drafts of this publication: Mary Beth Paul, Barb McKenzie, Melody Brauninger, and Jack Pealer. You helped make sense out of our words.

We thank Jim Hazelbaker and his students in the graphic arts class at the Adams County/Ohio Valley Vocational School for their patience and guidance in producing this publication. Special thanks to James Fisher.

And finally, to Fatica Ayers of the Ohio Developmental Disabilities Council - we thank you for the cheerleading from the back of the room (YEA!) at the mention of "Removing the Mask". There were many ways and times that you made this project work for people, and refused to make the people work for the project.

Many lives, many voices, many thanks.

Candee Basford & Jo Krippenstapel

TABLE OF CONTENTS

INTRODUCTION: A NEW STORY WITH A RICH HISTORY
Hopes and Dreams
Worries and Concerns
Opportunities to Gather and Reflect in the Year 2000

SPRING 2000: PANEL DISCUSSION ON SELF-ADVOCACY
Spring Panel on Discussion on Self-Advocacy
Self and Self-Advocacy
Self-Advocacy ... and Groups (or not)
Getting to Know Yourself
Speaking up for Who You Are
Seeing Capacities
Graphic Recordings
Activities and Reflections

SUMMER 2000: A GATHERING ON SELF-ADVOCACY
Summer Gathering on Self-Advocacy: Morning Session
What Might Make You Might Fall Silent?
What Happens to People Who Have No Voice?
Why Would Someone Take Away Another Perons's Voice?
How Do Voices Get Stronger?
What Are the Good Things that Happen When People Use their Voices?
What Problems Come Along with Having More Voice?
Summer Gathering on Self-Advocacy: Afternoon Session
How do we Get Started in Self-Advocacy?
How do we keep Self-Advocacy Growing?
How do we Educate others to Listen?
Being a Good Advisor - What does it Mean?
How Self-Advocacy can Get the System Moving
Self-Advocacy and Self-Determination - what's the connection?
What can Parents do to Help Self-Advocacy?
Graphic Recordings (not available in text only version)
Activities and Reflections

FALL 2000: BECOMING AN ADVISOR
Fall Becoming an Advisor
Getting to Know One Another
Making Time for People's Stories
Arranging the Logistics
Helping People Prepare
How do We Get Involved In Self-Advocacy?
What do You do if the Advisor Starts to Take Over?
What is Self-Advocacy? What is it not?
What helps People Speak for Themselves When no one has Listened so far?
Stories and Advice
Stories that Make you Cry
Graphic Recording (not available in text only version)
Activities and Reflections

WINTER 2000 - RESOURCE PUBLICATION
Resources
Organizations
On-Line Information and Conversations
On-Line articles from the Center on Human Policy
Books and Publications

Closing Quote

OHIO VOICES: LEARNING FROM FOUR SEASONS OF CONVERSATIONS ABOUT SELF-ADVOCACY

A NEW STORY WITH A RICH HISTORY

The story of self-advocacy in Ohio is a new story with a rich history. The history of self-advocacy includes the legacy of countless citizens with disabilities who have used their individual and collective voices to right wrongs and build stronger communities. Since the first self-advocacy conference in the United States was held in Oregon in 1974 a vast network of formal and informal groups has emerged across the country. In Ohio, several self-advocacy groups have been active for years. Now more organized self-advocacy efforts are underway as the momentum and urgency for change is increased.

A new story builds on this rich tradition. The new story has witnessed the recent charter of People First of Ohio in 1998. Numerous local groups have organized in recent months. Some are affiliated with People First and some operate independently. In addition, in many communities people are gathering informally to explore the possibilities of full citizenship associated with self-advocacy.

HOPES AND DREAMS

As with any story of change and growth, the story of self-advocacy is filled with the hopes and dreams of many people. Ohio citizens with disabilities and their allies hope that self-advocacy can become a way to speak out about vital issues, both personal and public. Family members carry hopes that their loved one will find strength and support to work toward change while building strong connections to the community. Organizations look to self-advocacy to learn how to become more responsive in these dynamic times.

WORRIES AND CONCERNS

Along with hopes and dreams, the story of self-advocacy contains worries and concerns. How do we keep Self-Advocacy from turning into another buzzword? Are there risks that self-advocacy can become a tool that larger systems use to promote their own ends? How do we support people, who often have a lifetime of silence, to begin to find their own voice? How can we attract and nurture effective advisors?

OPPORTUNITIES TO GATHER AND REFLECT IN 2000

Removing the Mask responded to these hopes and concerns about self-advocacy by organizing a series of opportunities for people to gather and reflect, and build capacity.

SPRING: A panel discussion offered in conjunction with the Ohio Association of County Boards of MR/DD (OACBMRDD) Spring Conference in May provided the occasion to hear from panelists who have begun a journey into self advocacy. The panelists represented a rich and diverse view of the experience of self-advocacy. Several panelists have been active members or supporters of self-advocacy groups for many years. One panelist is a family member engaged in assisting her daughter in expressing who she is and what she wants. One is a leader in the Ohio People First movement. The panel discussion began with a focus on three questions: Why is self-advocacy at the heart of this work? How can people strengthen their voices about who they are and what they need and want? What are the pioneers in Ohio doing and learning? The reflections for the spring panel are included in the spring section.

SUMMER: The "Gathering on Self Advocacy" in August offered over one hundred participants an opportunity to reflect on the experiences of silence and finding a voice. John O’Brien of Responsive Systems Associates, Atlanta, Georgia facilitated this session. In the morning, participants engaged in a series of small group discussions focused on these six powerful questions that are listed below.

What might make you fall silent?
What happens to people who have no voice?
Why would someone take away another person’s voice?
How do people’s voices get stronger?
What are the good things that happen when people use their voices?
What problems come along with having more voice?

As the large group came back together to hear and gather their responses to these questions patterns began to emerge. These patterns were shaped into poetic verse.

The afternoon session of the Gathering allowed an opportunity for participants to gather in discussion groups around questions of their own making. Small groups organized to considers these questions:

How do we get started in self-advocacy?
How do we keep self-advocacy growing in powerful ways?
What does being a good advisor mean?
How do we educate others to listen?
What is the connection between self-advocacy and self-determination?
How can self-advocacy get the system moving?
What can parents do to help self-advocacy?

FALL: A daylong session in November gathered those interested in building the capacities of people acting in the role of advisors and supporters of self-advocacy efforts. Deb Schmeiding, Jill Wallace, and David Hardinger of First, People of Athens County planned and led this session. Participants engaged in a discussion and exercises designed to stimulate reflection and skill building around the themes of telling others who we are, recognizing and sharing our gifts and holding high expectations of ourselves and others. The graphic recording of this conversation and selected excerpts of this discussion are included in the fall section.

WINTER: This publication was created to be a container for some of the local wisdom and heartfelt hopes and worries that have been gathered from these yearlong conversations. Most of the words in this document are real words, spoken by real people in Ohio.

Because this is only the beginning of our story about self-advocacy in Ohio this publication is offered in a format open to possibilities. In addition to the wisdom found in the voices of many Ohioans who participated in these conversations, you will find inspiring quotes from others and ideas about additional resources and activities.

We hope you use your continued involvement in self-advocacy to contribute to our collective learning.

SPRING - PANEL DISCUSSION ON SELF ADVOCACY - COLUMBUS, OHIO - MAY 31, 2000

SPRING PANEL DISCUSSION ON SELF ADVOCACY

On May 31st, 2000 Removing the Mask sponsored a Panel Discussion on Self-Advocacy in conjunction with the OACBMRDD Spring Conference. Members of the panel included:

Melody Brauninger works for the Hamilton County Board of MRDD and supports a self-advocacy group.

Brian Welty is a resident of Hamilton County and a member of a self-advocacy group.

David Long is a resident of Athens County and a member of the First, People of Athens County Self-Advocacy Group Group.

Deb Schmieding is a resident of Athens County and a supporter of the First, People of Athens County.

Barb McKenzie is a Franklin County parent who supports her daughter’s efforts to speak up and help others know Erin.

John Hannah is a Champaign County resident, staff of Champaign County Residential Services, and Treasurer of People First of Ohio.

Stella Gola is a supporter of emerging self-advocacy efforts in Butler County.

Kelley Allen is resides in Butler County and is active in self-advocacy efforts in her community.

The panel discussion began with a focus on three questions:

  1. Why is self-advocacy at the heart of this work?
  2. How can people strengthen their voices about who they are and what they need and want?
  3. What are the pioneers in Ohio doing and learning?

The panelists shared personal experiences, told stories, and engaged in conversation with people who came to listen. Their diverse life experiences and pioneering efforts around self-advocacy allowed room for many perspectives on these three questions. The following pages contain some of the themes that evolved during the course of this two hour conversation. These themes are also represented in graphic recordings included at the end of the spring section. These recordings reflect the words and images of the gathering.

SELF AND SELF ADVOCACY

Panelists were clear that self-advocacy is not just about self. Kelly Allen, one of the people committed to the emerging self advocacy effort in Middletown, expressed her pride in this aspect of self advocacy when she said, "Everyday people are asking me to help somebody out who goes to the workshop in Middletown. They call me the voice of Middletown."

David Long also expressed this sentiment in his reflections on the people he remembers as he engages in his lobbying and legislative reform efforts. "I can’t leave them behind," he said.

Panelists also offered powerful testimony that self-advocacy is not just for people with disabilities. John Hannah, a long time member of a self-advocacy group, pointed this out when he said, "Everyone is an advocate and tries to help themselves." In this spirit, the focus of self-advocacy is about what we all do, with help from those who care about us, to help ourselves become what we know we can be. It’s about finding one’s place in this world. When we make this territory the exclusive province of those with disabilities, we diminish the experience for all.

SELF-ADVOCACY....AND GROUPS (OR NOT)

Many stories reflected the power created when people come together, get to know one another (and themselves), and engage in collective action around issues of shared concern. Seeing results from collective action creates the eagerness to engage in another effort together. Brian Welty and Melody Brauninger, for example, spoke of their satisfaction in influencing the Strategic Plan for the Hamilton County Board of MRDD.

Panelists helped the audience understand that Self-advocacy is not limited to what happens in organized groups. Stella Gola, a supporter of self-advocacy in Butler County, reminded those present that "it’s about the small everyday ways we find to support people to say what’s on their mind and respond to them." Self-advocacy, if relegated to a monthly meeting, becomes another "program" and separate from people’s lives.

GETTING TO KNOW YOURSELF

Many in the audience had questions of the panelists about what happens in their self-advocacy groups. We heard about rallies, fundraisers, forums, lobbying.....and getting to know yourself. Brian Welty, a member of a Hamilton County group, spoke of the work involved in "just being comfortable with yourself." He reminded listeners that getting to know oneself is not something one can do alone. Becoming a part of a group that knows and cares about you is a powerful way to grow and know more about yourself.

Panelists spoke at length of the importance of people in the group getting to know one another. Some spoke frankly about the work involved in listening and caring for those in the group who hadn’t yet found a way to like themselves. It was Deb Schmieding, an experienced supporter of a group in Athens County, who reminded us that this is not the exclusive work of the advisor. "Support the group to learn how to support the person", she said.

SPEAKING UP FOR WHO YOU ARE

These panelists were quick to point out that getting to know yourself, for any of us, is made easier by having lots of ways to express who we are. If one has difficulty communicating it is even more challenging to find creative ways to express who you are. Barb McKenzie, whose daughter Erin is in High School in Franklin County shared the approach she uses to help Erin speak up and be more involved in her meetings. Erin has an ‘About Me Box’, or in Erin’s case, an ‘About Me Bag’. It’s a collection of pictures and items that represents Erin’s interests, talents, and experiences.

"When Erin uses this 'About Me Bag' to share who she is, it becomes an opportunity for the school team to learn about Erin’s capacities as opposed to her deficits. We want her known this way," said Barb.

SEEING CAPACITIES

Those on the panel talked in many ways about the gift of being able (or willing) to see capacity in people, in situations and in community. Panelists spoke with optimism and energy about people with disabilities, their families and supporters, and the communities in which they live.

This theme of seeing capacity resonated again when audience members asked Melody Brauninger, one of the supporters of a Hamilton County group, about what she had learned through her engagement with the group. Melody spoke of learning about capacity, "I believe in my inner most heart that these people have capacity. My biggest learning is that I haven’t had to do much teaching. The group supports each person. The whole experience (of supporting a group) has blown me away. People are able to eloquently express their opinions."

It was Deb Schmieding, a long standing supporter of First, People of Athens County, who reminded everyone that those considering the role of supporter/advisor can find capacity to do so. "It was clear to me that it was possible to be terrible (at advising a group) My goal was not to be terrible, and I wasn’t. We mutually pulled one another along. Don’t shrink from advising. Know yourself and your background. It’s a complex and important job - aspire not to be terrible." This capacity-finding work is mutual work. When we think "I can’t", it may be an indication that we have forgotten our mutuality - the capacity of others.

The words and ideas generated during this panel discussion are reflected in the graphic recording included in this section (Editor's Note: graphic recording not available in text version). Following the graphic recording, at the end of this section, are activities and reflections to carry forward these ideas.

ACTIVITIES AND REFLECTIONS

HOW CAN MEMBERS AND SUPPORTERS ENGAGED IN A SELF-ADVOCACY GROUP INVEST IN GETTING TO KNOW THEMSELVES AND ONE ANOTHER BETTER?

PLAY THE "NAME GAME"

  1. Sit in a circle. Say your name, tell something about what you like to do or who you are. Make a sound or gesture that represents this. (For example, "My name is Joe. I like to fish" - making a casting motion).
  2. The next person introduces Joe and repeats the sound or gesture and then introduces himself/herself and includes a sound or gesture, ("This is Joe, he likes to fish" - maing a casting motion. "My name is Sarah, I love the Reds." - gesture a swinging bat).
  3. The next person introduces both Joe (and casts) and Sarah (and swings bat) then introduces themselves and so on and so on. If someone forgets, the group helps and the person has an opportunity to practice the art of looking at someone and saying, "Sorry, I just forgot your name."

"Get to know yourself. You'll like what you see." David Long, Member of First, People of Athens County.

ENGAGE IN "ICE-BREAKER" ACTIVITIES. Good suggestions about icebreakers are found in many training and team-building workbooks.

SPEND TIME TALKING IN GROUPS about interests, hobbies, hopes and dreams. Help people make connections around similar hopes and interests.

LEARNING TO SPEAK UP ABOUT WHO YOU ARE.

SUPPORT PEOPLE TO CREATE AN "ABOUT ME BOX" bag, or shoebox...). Collect objects, artifacts, or pictures that represent the persons's intersts, hobbies, passions, hopes and dreams and place them in a container that can be carried and shared with others.

ASK PEOPLE TO PAIR UP AND INTRODUCE THEMSELVES to a partner, each using the "About Me Box" to support the introduction. Then support people to introduce their partner to the group, using their partner's About Me Box.

FIND CREATIVE WAYS TO SUPPORT PEOPLE who have difficulty communicating to create and share their "About Me Boxes".

"When Erin uses this 'About Me Bag' to share who she is, it becomes an opportunity for the school team to learn about Erin's capacities as opposed to her deficits. We want people to know her this way." Barb McKenzie, mother of Erin McKenzie, a high school student in Franklin County.

The "About Me box" has been developed and used with much success by Advocates in Action in Rhode Island. If you want to learn more see the Resource section for information on how to contact Advocates in Action.

SUMMER - GATHERING ON SELF ADVOCACY - COLUMBUS, OHIO - AUGUST 30TH, 2000

SUMMER GATHERING ON SELF ADVOCACY

MORNING SESSION

On August 30, 2000 Removing the Mask sponsored a "Gathering on Self-Advocacy" in Columbus, Ohio. Over one hundred people gathered at round tables in a large room. The group included people with disabilities and their supporters, staff and family members. John O’Brien of Responsive Systems Associates, Atlanta, Georgia facilitated this gathering. During the morning session, people focuses on these six powerful questions:

  1. What might make you fall silent?
  2. What happens to people who have no voice?
  3. Why would someone take away another person's voice?
  4. How do people's voices get stronger?
  5. What are the good things that happen when people use their voices?
  6. What problems come along with having more voice?

People at each table examined these questions one by one. Participants use chart paper on the tables to write down and remember their responses as they discussed each question. After some time spent in reflection on a question, John invited those from each table to share their responses with the larger group.

The pages that follow are the words spoken by the participants as they shared reflections with the large group. After the event, when the spoken words were joined and put on paper, a pattern of rhythm and beauty emerged as the poetry that is shown on the following pages. The words have not been changed. They have been joined into a pattern of rhythm that highlights the inherent dignity in the words and in the speakers.

WHAT MIGHT MAKE YOU FALL SILENT?

IF you talk all you want
But nothing really happens,
If you don’t have opportunities to learn,
If people treat you without respect,
If people act stupid and you can’t get away
And they are in charge - you might fall silent.

IF you live in a place
Where people don’t take time to listen,
If you try to escape people might use fear
As a way to keep you there,
If everyone else acts like the staff people
are the important people - you might fall silent.

IF people around you talk around you
And make decisions without you,
If people pass you as if you’re not there,
If you live in a world where what you have to do
Is wait and wait - You might fall silent.

WHAT HAPPENS TO PEOPLE WHO HAVE NO VOICE?

PEOPLE WHO HAVE NO VOICE
Might lose skills,
Go numb,
Or shut down.
They might walk away.
If they can’t walk away
They have to hold that stuff inside.

PEOPLE WHO HAVE NO VOICE
Might get depressed.
Get upset and yell.
Get a behavior plan.
Get medication.
Get a reinforcement program.
Get labeled.

PEOPLE WHO HAVE NO VOICE
Might experience reckless behavior,
A loss of self-worth.
They might feel helpless.
They might stop hoping,
Stop dreaming.

WHY WOULD SOMEONE TAKE AWAY ANOTHER PERSON’S VOICE?

Someone might take away another person’s voice
Because they want control.
People think they know better.
They’re afraid of what might happen.
People want to talk for us.
It takes too much time to listen.

Someone might take away another person’s voice
Because some people think they have a self advocacy organization,
but the organization is in a box.
There are things that happen when you speak out and fight with people.
Others might want to put you out.

Someone might take away another person’s voice
Because when we’re disturbing things people get scared and people and systems push back.
It’s the power of money,
It’s job security,
It’s the evaluation of people.

Someone might take away another person’s voice
Because it’s too easy and comfortable to do things the way we’ve always done it.
People think of themselves.
People are well meaning and have good intentions
Even if it’s wrong.

HOW DO PEOPLE’S VOICES GET STRONGER?

Voices get stronger when we
Learn to listen
To one another’s stories,
Not step on them like a carpet.

Voices get stronger when we
Speak to and find others
Who haven’t found
Their voice yet.

Voices get stronger when we
Find our voice by speaking up and
Working for change
In something we care about.

WHAT ARE THE GOOD THINGS THAT HAPPEN WHEN PEOPLE USE THEIR VOICES?

When people use their VOICE
They gain respect and confidence;
Self control and choice.

When people use their VOICE
It can help people live the life they want,
Make more money,
Work where they want to work.

When people use their VOICE
They become participating citizens.
As participating citizens they get results.
More voice means more freedom.

WHAT PROBLEMS COME ALONG WITH HAVING MORE VOICE - WITH MORE VOICE

You might invite scrutiny and criticism
Lose your job
Struggle with the system
Get busier.

WITH MORE VOICE

If you see a problem
You might become responsible
To do something about it.
Responsibility means consequences.

WITH MORE VOICE

You might experience
Backlash and resistance
Fear of failure
Loss of security.

WITH MORE VOICE

People won’t always agree.
They might attack you
Instead of saying, "I don’t agree."

We need more people WITH MORE VOICE.

SUMMER GATHERING ON SELF ADVOCACY

AFTERNOON SESSION

The afternoon session at the Gathering on Self-Advocacy allowed an opportunity for participants to gather in discussion groups around questions of their own making. Small groups organized to consider these questions:

  1. How do we get started in self-advocacy?
  2. How do we keep self-advocacy growing?
  3. How do we educate others to listen?
  4. Being a good advisor - What does it mean?
  5. How can self-advocacy get the system moving?
  6. Self-advocacy & self-determination - What's the connection?
  7. What can parents do to help self-advocacy?

People selected the question that mattered most to them. Then they gathered into small groups to explore their question together. The reflections of the small groups are contained in the following pages. At the end of this section there are actions and reflections to carry forward these ideas.

HOW DO WE GET STARTED IN SELF-ADVOCACY?

  • Visit other groups.
  • Help advisors meet parents who might want to become involved.
  • Raise money.
  • Come up with a name.
  • Consider joining up with People First or Self Advocates Becoming Empowered (SABE).
  • Get people involved.
  • Get leadership trained.
  • Get help for those who want to get involved.
  • Make it fun and people will come.

HOW DO WE KEEP SELF-ADVOCACY GROWING?

  • Consider keeping it secret for a while - you may have more flexibility.
  • Establish only a few policies and rules.
  • Align work or action with other local interest groups.
  • Find and use lots of outside support- advisors from other groups might be able to help.
  • Choose advisors from lots of different places.
  • Work on common interests with local agencies.
  • Stay in touch with each other.
  • Network - resources are not just money.
  • Do what you need to do to keep people going until they get strong.

HOW DO WE EDUCATE OTHERS TO LISTEN?

  • Help others focus on our sameness, what we have in common.
  • Become a friend.
  • Earn people’s respect.
  • Learn to listen better to ourselves.
  • Help people join conversations and groups. It helps some people join a conversation when another person reaches out to them.
  • It helps some people when word problems are used, like "what would you do in this situation?"
  • It helps to know how someone communicates. Some people might use sign language, for example.
  • When people don’t use words to speak we can listen to their body language.
  • Earn respect of friends and family members.
  • Take time to listen, especially when people don’t talk that well.
  • Respect other people’s ways and ideas on how to go about doing things in the community.
  • When you have a strong voice, people listen.

BEING A GOOD ADVISOR - WHAT DOES IT MEAN?

  • To listen.
  • Help organize.
  • Be careful not to influence too much.
  • Ask questions to help the group define the issues.
  • Model, teach, encourage, support.
  • Help people state likes and dislikes through role-play or practice.
  • Help the group define a project.
  • Help people tell stories and speak about who they are, use their voice.
  • Know when to be quiet.
  • Help people learn words & procedures.
  • Help people make real life choices.
  • Begin by leading, modeling and then backing out.
  • Question yourself and your motives.
  • Support each other as advisors.
  • Ask the group what they want.
  • Have fun.

HOW CAN SELF-ADVOCACY GET THE SYSTEM MOVING?

  • Get to know your legislators and legislative aides.
  • Write letters.
  • Family members testify.
  • People with disabilities testify.
  • Educate many people about the issues.
  • Educate people on how the money works.
  • Network.
  • Speak up and out for yourself.

Self-Advocacy & self-determination - What’s the Connection?

  • Self-Advocates are the pioneers. They will become stronger in telling others what they want and need. Being able to do this is the foundation of self-determination.
  • When self-advocates become involved in self-determination they can change their future.
  • When self-advocates change their own futures, they also change the possibilities for better futures for many others.
  • Self-advocacy and self-determination are "long roads". It takes time and thoughtfulness.

WHAT CAN PARENTS DO TO HELP SELF-ADVOCACY?

  • Be persistent.
  • Be present.
  • Model self-advocacy.
  • Open the doors of opportunity.
  • Provide opportunities to belong, to learn.
  • Honor the voices of our sons and daughters.
  • Make sure our children are present.
  • Be a support to a self-advocacy group.
  • Listen.

GRAPHIC RECORDINGS NOT AVAILABLE IN TEXT ONLY VERSION

ACVITIES AND REFLECTIONS

HOW CAN MEMBERS AND SUPPORTS OF SELF-ADVOCACY GORUPS LEARN AND SHARE EXPERIENCES WITH SILENCE AND VOICE?

ENGAGE PEOPLE IN YOUR GROUP TO REFLECT ON THE QUESTIONS, ONE AT A TIME.

Use the questions from the Morning Session of the August 30th Gathering on Self-Advocacy:

  • What might make you fall silent?
  • What happens to people who have no voice?
  • Why would someone take away another person's voice?
  • How do people's voices get stronger?
  • What are the good things that happen when people use their voices?
  • What problems can come along with having more voice?

You might:

INVITE GROUPS OF PEOPLE TO MAKE A POSTER that reflects their responses to one of the questions. The poster could be words, pictures, or images that reflect people's reactions.

INVITE THE GROUP TO CREATE A COLLAGE, made of pictures from magazines, found objects, etc. that represent their responses to a question.

INVITE PEOPLE TO PAIR UP AND EXAMINE ONE OF THE QUESTIONS TOGETHER. Encourage people to practice sharing their experiences and listening to another person's experiences.

COLLECT PEOPLE'S RESPONSES TO ONE OF THE QUESTIONS AND PUT THEM IN VERSE (as we have in this publication). Have one person read them back to the group.

CREATE A "CHORAL READING" of the responses by creating a "choir". Have two or three people recite one line, followed by two or three others reciting the next line, and so on. These dramatic readings, with words written by people who "perform" them, make a powerful presentation. It takes practice and an investment of time, and is a powerful way to grow a stronger voice. Some groups have used volunteers from theatre groups to help them raise the artistic quality of their performances so that they could perform for wider audiences.

SHARE WHAT YOU DO WITH OTHERS. Invite yourself to a board meeting, offer to do a workshop at a conference, invite other self-advocacy groups to see and hear what you've created.

WHAT CAN YOU DO IF YOU ARE INTERESTED IN SUPPORTING THE DEVELOPMENT OF A LOCAL SELF-ADVOCACY GROUP?

TALK TO OTHERS IN OHIO WHO ARE ACTIVE IN A GROUP. Use this workgroup to find the places and people in Ohio that are involved in self-advocacy groups. (See the Map of Ohio in this section). Talk with people about how they got started.

CONTACT PEOPLE FIRST OF OHIO. Contact information is in the Resource Section of this workbook. Ask if someone can assist you.

FIND SOME ALLIES in your organization or community. Connect with others who share, or might share your interest in starting a group. Get a small group of interested people together and invite someone from People First of Ohio to come and talk about some first steps.

GET OUT! LOOK FOR OPPORTUNITIES to attend conferences that have sessions on self-advocacy. Take your allies with you. Go early and stay late. Talk with the presenters about how they got started. Ask them for their ideas. Find out who is in the room. Maybe someone lives near you and is willing to exchange information and ideas. If you are a person with a disability or a family member and need support to attend the conference, contact the Ohio Develop-mental Disabilities Council. See Resource Section of this workbook for contact information.

FALL - BECOMING AN ADVISOR - LONDON, OHIO - NOVEMBER 7, 2000

FALL SESSION ON BECOMING AN ADVISOR

On November 7th, 2000 thirty-four people came together at the Procter Center in London, Ohio to consider the role of the advisor or supporter of a self-advocacy group. These thirty-four people included those who have been members of groups, some for a long time, others only recently. Experienced advisors and supporters, and those new to the role were present. Family members and staff of provider organizations participated as well.

Removing the Mask (RTM) arranged and supported the event. RTM invited First, People of Athens County to plan and facilitate the day's conversation. Deb Schmieding (advisor), and Jill Wallace and David Hartinger (members) shared the leadership. These three brought their years of experience with self advocacy and their learning from their life experiences to shape a day of conversation and reflection on the role of the advisor.

GETTING TO KNOW ONE ANOTHER

The day began with an opportunity to get to know one another. One by one, people were invited to say their name and then respond to these questions

  1. What is an interesting way you spend your time?
  2. What is one way you have helped end the oppression of others?
  3. What is the highest expectation you have for yourself?
  4. On a scale of 1-10 how good are you at asking for help?
  5. Who is your "best bet"?
  6. State VERY PROUDLY one thing you want us to know about you?

This exercise engaged people completely. It took a lot of time - almost two hours. Here are some reflections that participants offered about this exercise:

"If we don't know each other, we have only ourselves. If we know one another we have one another's strengths and gifts to lean on and learn from."

"We were often surprised by the interesting ways we spend our time".

There were moments of "wow!" and "you're kidding?" and "me too!"

WE LEARNED:

  • That it's easier and more fun to build on introductions by connecting with another person around something you have in common, or something that the other person does that you want to hear more about.
  • That we sometimes have a hard time stating the highest expectations we have of ourselves. We're not sure why that is. We could probably get better at this with practice and support.
  • That as a group, we're lousy at asking for help for ourselves. This is worth thinking about (both for ourselves and the self-advocacy groups we are involved in). Among other things, it suggests how much our cultures values "self-reliance".
  • That each of has a "best bet" - a person we can turn to. This person is invaluable to those who venture into the advisor role and need honesty and support from people who know them well.
  • That some of us had a hard making a proud statement about ourselves. We noticed that this is worth our attention and practice. For some of us it may mean, "breaking the rules we grew up with".

These reflections made it clear that advisors of self-advocacy efforts can take steps to encourage people to explore who they are, find the words to talk about themselves, and share this with others.

MAKING TIME FOR PEOPLE'S STORIES

Those in the group with experience as advisors spoke of the importance of "making time for people's stories." Sometimes advisors cut off the telling of stories because "it's not on the agenda", or "we've all heard that one before". The story is sometimes the way into hearing what is important to that person and exploring that with the group. It sometimes is a way for people to connect around common experiences.

ARRANGING THE LOGISTICS

The experienced advisors in the group also noted that advisors can support people to participate by paying attention to the "logistics" like transportation, comfortable meeting space, and personal supports that enable participants to free up their energy enough to make contributions.

HELPING PEOPLE PREPARE

Those who had experience as group members pointed out the importance of helping members come to the meeting prepared. The advisor doesn't have to do all this alone. Members can do this together, and others who know the person can be involved. Preparation will mean different things to different people. For some, it may mean a chance to think things over alone in advance and "get my thoughts organized". For others, it may mean talking over the agenda items and getting some help in making notes or pictures that remind me what I want to say or ask. As one advisor said, "Support the preparation so that people's capacities are clear".

BURNING QUESTIONS

Most of the day was spent in identifying and discussing the "burning questions" that people brought with them. Some of these burning questions and the discussions around them are outlined below. At the close of this section is a graphic summary of the day's discussion.

BURNING QUESTION #1

HOW DO WE GET PEOPLE INVOLVED IN SELF-ADVOCACY?

We noticed that it helped when we thought about "How did I become involved?" The same reasons that pulled us toward involvement will pull others as well. Here are quotes from some of the participants that express "Why me, why did I become involved?"

"Someone with passion around an issue invited me to do something. I wasn't sure about the invitation, but was attracted by the passion. Someone I trusted invited me. Someone was persistent until I said yes."

"I was inspired by a person with a disability. I was floored by the stories they told and just wanted to be connected with what they were doing."

"I heard a grown woman (with a disability) say, 'When I grow up...' Something happened in my heart. I still hear her voice. At the time I was involved in civil rights work in Louisiana. It made me see how connected civil rights and self-advocacy can be."

"Someone said to me 'you have a hopeful attitude.' I appreciated hearing that and I think it is true. It made me see what I could offer if I got involved."

"People with disabilities were part of a training that my agency did. It gave me a chance to see things in a new way. One person with a disability said, 'You professionals make me sick'. This challenged me to think about myself and to change."

"Early in life, around age eleven, I remember what people said about my disability and what my life would be, and I said to myself, 'This just isn't right!'"

"Because of my disability, I didn't have an opportunity for an education. Self-advocacy is a way for me to make up for this and let out my frustration in a positive way."

"I'm a good listener and I want more. I saw self-advocacy as a way to listen and get more."

"I went to one self-advocacy meeting and came away thinking, 'This is the foundation, this is central - the rest feels like a joke."

"Moving from 'I can't' to 'I can' is the most awesome feeling. This is what self-advocacy has meant to me and why I'm still involved."

"It's clear to me that the people who are involved in self-advocacy in my area are the 'shakers and movers'. I simply wanted to be connected with them, so I got involved."

BURNING QUESTION #2

WHAT DO YOU DO IF THE ADVISOR STARTS TO TAKE OVER? IF YOU ARE THE ADVISOR, HOW DO YOU KNOW IF YOU'RE TAKING OVER?

"Build in some up-front features (at the start of the group) that reduce the chances that advisors take over. For example, have a pair or a team of advisors that share roles, have experienced outsiders sit in on your meetings and offer feedback, etc."

"Plan a partnership going in. How can we do this TOGETHER in a way that supports your life direction?"

"Encourage everyone to be open to new ideas and to compromise. Invest early in training in group skills and meeting skills and simple etiquette and manners."

"Have lots of ways to check in with one another about 'How is this going?'"

"Hold the meetings on the turf that feels most comfortable to the members."

"Support members to become increasingly able to create and lead their own agenda."

BURNING QUESTION # 3

WHAT IS SELF-ADVOCACY? WHAT IS IT NOT?

Self-Advocacy IS...

An opportunity to change my life

A way to find the steps to change

Helping others

A fire within you

Creating momentum

Understanding your rights as a human

Talking about what offends you and what words do you like better

A vehicle for equity (we have a long way to go)

Moving beyond protection

Empowering others

More than the choice at the pop machine

Building bridges

A change of power

Opening doors and connections

Help to meet goals

A natural outcome of being human

Self-Advocacy is not...

Getting something free

Special rights or special treatment

Complaining without doing anything

For a select few... the insiders

A program... a fad of the year

Just a group that exists on paper without being a part of your community

Just for or about people with disabilities (lots of us need this)

About independence... but creating a circle of connections among people who care about me not FOR me

Saying that we don't need our parents or breaking ties with our families

BURNING QUESTION # 4

WHAT HELPS PEOPLE SPEAK FOR THEMSELVES WHEN NO ONE HAS LISTENED SO FAR?

  • Tell each other our stories. It's a two way street.
  • Support people to figure it out - Find our own answers.
  • Respect. Practice equality. Really listen.
  • Have an open heart.
  • Liking people.
  • Time.
  • Trust, time, and consistent relationships.
  • Capacity building. Practice and develop the skills and capacities that support people to talk and listen to what's important to them.

STORIES AND ADVICE

Included in the day was time to hear stories and advice from the hosts. David Hartinger and Jill Wallace shared these thoughts:

"People with disabilities in Ohio have a history of speaking up for themselves and fighting for our rights. We need to continue to do this. We need to keep chipping away at this question: "what is self advocacy?"

Sometimes people with disabilities are told, "You don't have the skills to (do what you want), so you'll just have to do what you hate." This is not our only choice. We can still work toward trying to figure out what it would take to do what we really want.

We all have deficits and difficulties. Ask for what you want and work for what you need. Don't just do things for me, give me the tools and support so I can do it myself!

Find your courage to share your vision and change your world. Remember: "Nothing about me, without me."

STORIES THAT MAKE YOU CRY

Advice from Deb Schmieding:

"Keep close to yourself "stories that make you cry". Share these with others. Let them help you remember what your work is about. Allow yourself to be touched deeply on a regular basis."

Don't forget: It's not your show. Inspire people to help you. Especially people with drivers' licenses. Be clear about accounting and finances. How are things being paid for? Make it easy to know and understand. Be very clever about accommodations so that nobody gets left out.

Be aware and respond to the fact that some people with disabilities think that others with disabilities aren't worth it (because this is what they have been told).

GRAPHIC RECORDINGS NOT AVAILABLE IN TEXT ONLY VERSION

ACTIVITIES AND REFLECTIONS

FINDING AND HOLDING THE COURAGE TO THOUGHTFULLY ENGAGE IN THIS WORK

KEEP TRACK OF WHAT YOU ARE LEARNING about the role of advisor/supporter. Notice the surprises along the way. Keep a journal - or use this workbook to record some of your thoughts over time.

FIND A MORE EXPERIENCED ADVISOR TO TALK WITH about your experiences. Contact People First (see resource section) to get the names of advisors in your area. Contact some of the people referred to in this workbook.

SHARE THE ROLE OF ADVISOR/SUPPORTER. Find time to talk and reflect together on your experiences. Find ways to get feedback from group members about how you can become more helpful.

"Don't shrink from advising. Know yourself and your own background. It's a complex and important job - aspire not to be terrible." Deb Schmideing, supporter of First, People of Athens County.

WINTER - RESOURCE PUBLICATION - DECEMBER 2000

RESOURCES

ORGANIZATIONS

Advocating Change Together (ACT).

Web address: www.selfadvocacy.com. Phone: 1-800-641-0059

ACT is a nonprofit disability rights organization run by and for people with developmental and other disabilities. Act is committed to freedom, equality and justice for all people with disabilities. Act has a series of videos that are helpful for groups to view together. Removing the Mask purchased some of these videos with the hope that new and established groups will use them to enhance their work. The videos feature people with disabilities and use song and art in creative ways. Videos include a facilitator's manual with discussion guides, exercises, and tips for trainers. If you would like to find out about the videos that are available for loan at no cost, contact the Ohio Developmental Disabilities Council. (contact information can be found in this section)

Self Advocates Becoming Empowered

Home page. www.sabeusa.org

The SABE USA’s Online Directory. The starting point for Self-Advocates Becoming Empowered. The mission of SABE is to ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities and chances to speak up to empower themselves; have opportunities to make new friends; and to learn from their mistakes.

Advocates in Action.

Web Address: www.Aina-ri.com. Phone: 401-785-2028. E-mail: anina@aina-ri.org

Advocates in Action is a statewide Self-Advocacy Organization. This group has members who have videos and CD-ROM Publications on their life experiences. Members have consulted across the U.S. and their supporters have experience in creating user-friendly materials (especially graphics) to support the understanding and engagement of people with disabilities. Advocates in Action sponsored the National Self Advocates Becoming Empowered Conference in August, 2001. A CD-ROM of the conference highlights is available.

Capabilities Unlimited (CUI)

Web Address: brugold.com/cui.html

CUI is a private non-profit organization committed to the inclusion of all people, with or without disabilities, to reach their full potential in their communities.

Central England People First

(formerly Northamptonshire People First. Web Address: www.peoplefirst.org.uk

An organization from the United Kingdom of people with disabilities speaking up for themselves. This site includes links to several other self-advocacy organizations, and has two internet mailing lists on self-advocacy, one for self-advocates to speak with each other and one for self-advocates and the people supporting self-advocates to speak with each other.

The Ohio Developmental Disabilities Council (ODDC)

Web Address: www.ohio.gov/ddc. Phone: 1-800-766-7426. Fax: 614-466-0298. TTY: 614-644-5530. Address: Ohio Developmental Disabilities Council, 8 East Long Street, 12th Floor, Columbus,Ohio 43215.

ODDC is a planning and advocacy body committed to community inclusion for people with developmental disabilities.

People First of Ohio

Web Address: www.peoplefirstofohio.org. Phone: 1-888-959-8838. Fax: 740-397-6118. Address: People First of Ohio, P.O. Box 988, Mount Vernon, Ohio 43050.

People First of Ohio believes that all people with disabilities should be treated as equals and be able to speak up for what they want by serving as leaders and working together as a team with all members of the community. The goals of People First are to teach our communities about people with disabilities; To increase the statewide awareness and support of People First of Ohio; To work toward seeing that people with disabilities have the right to do what they want in their lives and are responsible for choices. Also, to make sure that people with disabilities have the right to live in the community like other community members; To help people with disabilities leave institutions by providing and advocating for community support they might need; and to work on helping people with disabilities get health insurance.

The Self-Advocacy Leadership Network

Web address: www.hsri.org/leaders/leaders.html

The Self-Advocacy Leadership Network is a team of self-advocates and professionals who will train anywhere to train others on self-determination, community integration, participant-driven supports, and systems change. The purpose of the Leadership Network is to prepare self-advocates to play a leadership role in guiding developmental disabilities systems change in ways that promote self-determination, community integration and participant-driven supports.

Speaking for Ourselves

www.speaking.org/

Speaking for Ourselves seeks to be an independent community organization controlled by people with disabilities who help us.

  1. Find a voice for ourselves.
  2. Teach the public about the needs and wishes and potential of people with disabilities.
  3. Speak out on important issues.
  4. Support each other through sharing, leadership development, and helping and encouraging each other.

ON LINE INFORMATION AND CONVERSATIONS

Self-determination in Ohio

self-determination.com/State/Ohio.htm

Links to organizations, resources, news, happenings, events and announcements about what's happening at the state and local level.

Advisor List Serve

Deb Schmieding is the moderator of a new list serve for current advisors or people interested in becoming an advisor of a self-advocacy group in Ohio. To join the list serve send an e-mail to ohioadvisors@list.svaha.com

ON-LINE ARTICLES ABOUT SELF-ADVOCACY & SELF DETERMINATION FROM THE CENTER ON HUMAN POLICY AT SYRACUSE UNIVERSITY

Web Address: soeweb.syr.edu/thechp/selfadvo.htm

A Chance to be Made Whole: People First Members Being Friends to Tear Down Institution Walls

Fact Sheet on Self- Advocacy

Fact Sheet: Summary of Self-Determination

Focus on Self-Determination in Vermont

"Learning Community" Discussion Paper - Self-Determination in Vermont

Making a Move - Advice from People First Members...

More Thoughts on Self-Advocacy: The Movement, the Group, and the Individual.

The Self-Advocacy Movement

The Self-Advocacy Movement: Opportunities for Everyone

Self-Determination

Thoughts About Self-Advocacy

The Value of Trust: The Perspective of a Person with a Disability

What Do Members Want from People First?

Books & Publications

Advice for Advisor from the National People First Project. By Bill Worrell. 1988.

Lost in a Desert World: The Autobiography of Roland Johnson. By Roland Johnson, Karl Williams

"The Bruises are on the Inside" by Ruthie-Mae Beckwith. Found in Dybwad, Gunnar, and Bersani, Hank (eds). New Voices :Self-Advocacy by People with Disabilities. Cambridge, MA.: Brookline Books. 1996.

Nobody, Nowhere. Donna Williams. 1992 Time Books

Somebody, Somewhere. Donna Williams. 1992. Time Books

Like Color to the Blind: Soul Searching and Soul Finding, Time Books. 1996.

Thinking in Pictures. Temple Grandin. Doubleday. 1995

American Dreaming, Stories of Change. Ohio Developmental Disabilities Council. 1999. Published by Removing the Mask. Stories with a focus on the themes of citizenship, status and opportunity as told by family members and people with disabilities living in Ohio. Available on-line at: www.ohio.gov/ddc/Pub/Self.htm

CLOSING QUOTE ....

"So how can we understand and help people who call themselves self-advocates? Only by watching them, simply watching them - and cheering them on."

Robert Perske. "Self-Advocates on the Move: A Journalist's View". Dybwad, Gunnar., and Bersani, Hank (eds). New Voices; Self-Advocacy by People with Disabilities. Cambridge, Ma; Brookline Books. 1996. P. 32.

I am glad to have you all as partners in this humble task we have taken on; which is, simply, to change the world. - Herb Lovet

 

 

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