Table Of Contents
Foreword by Donna Meltzer
Foreword by Dan Ohler
Chapter 1: An Introduction to Self-Advocacy
Chapter 2: NACDD’s Leadership Circle
Chapter 3: Learning and Practicing Self-advocacy
Chapter 4: Becoming an Effective Leader
About the Author
Foreword by Donna Meltzer
I serve as the CEO of the National Association of Councils on Developmental Disabilities (NACDD). I work each day with committed individuals like each of you to create change and make our world a better place for all. Sometimes we enact change through new laws and policies. Sometimes we create change through education and strong school curricula. Sometimes we create change by speaking out to groups of people or by talking with people one-on-one. We also create change simply by being ourselves and silently showing others who we are and what we are about by living the life we choose.
All of these pursuits for advocacy are equally important. It is up to us to figure out for ourselves which ways work best for each of us. The goal is to become an advocate and to inspire others to create change too. Self-advocacy means finding ways to speak out about change that can help you and others.
This book, The Art of Impact, explores the power of self-advocacy. It also presents the thoughts of a core group of committed leaders on NACDD’s Self-Advocate Leadership Circle. Scott Michael Robertson, Ph.D., wrote this book with input from these Leadership Circle members. Their book shares tips, tools, and strategies for advocacy to help you live a self-determined life and become an advocate for change.
We titled this book The Art of Impact because self-advocacy is an art form. Art means the expression or application of creative skill and imagination. NACDD’s Leadership Circle is full of creative skill and imagination! They are expressing their views and creating change through their own aesthetics. Some of the Leadership Circle members have artfully crafted testimony or presentations. Other members have given public performances, such as at comedy shows. Knowing all this creativity, we had to share it with you! We also wanted to emphasize our art theme through this book’s cover created by someone empowered by self-advocacy.
On behalf of NACDD and its Self-Advocate Leadership Circle, I invite you into this book. You can begin your own journey into self-advocacy or feel inspired to take your journey further. I hope you will learn something new from the examples shared here. We encourage everyone to speak up for themselves. We want you to lead a healthy and meaningful life and stay involved in your community.
Donna A. Meltzer
CEO, National Association of Councils on Developmental Disabilities
Foreword by Dan Ohler
The National Association of Councils on Developmental Disabilities (NACDD) has made self-advocacy a priority, evidenced in part by their creation of a Self-Advocacy Leadership Circle and other initiatives designed to foster the growth of self-advocacy that will span the nation.
At OPTUM, we are proud to have partnered with NACDD in funding the development of this e-book to reach as many people as possible. We believe that every person has the right to speak for themselves and the right to be involved in the decisions that impact their life. This ebook, titled A Handbook for Self Determined Living, is available on a computer or a variety of mobile devices, including an iPad or a Smartphone; of course, it can also be printed for people that would prefer a paper version. It was written by a self-advocate, who himself was assisted by people just like you that wanted to speak for themselves and to help you understand how to become your own advocate. Their stories are included in this handbook.
President Franklin D. Roosevelt, a man who himself had disabilities, was quoted: “The test of our progress is not whether we add more to the abundance of those who have much, it is whether we provide enough for those who have too little.” All of us at OPTUM, as well as our partners at NACDD, want you to pursue your dreams and have a great life. We hope that you find this handbook helpful in your efforts to become a self-advocate. This is your life and you have the right to speak for yourself and to be involved in the decisions that impact your life. If you are ready to get more involved in the decisions that impact you, this handbook is a great place to start. Your journey begins here!
Vice President for State Government Programs, OPTUM
OPTUM is a leading health services company committed to making the health care system better for everyone.
Chapter 1: An Introduction to Self-Advocacy
About this Book
In the first chapter of this e-book, you will read about what self-advocacy is. You will learn about how people from diverse backgrounds self-advocate every day. You will also learn about your rights and what it means to live in the community.
In the second chapter of this e-book, you will read about the Self-Advocates Leadership Circle. The members of this group come from several states around the U.S. and the territory of Guam. They have achieved success with self-advocacy in many different ways. They will write about how they learned about self-advocacy and what it means to them.
In the fourth chapter of this e-book, you will read about leadership. You will learn about what it means to be a leader in your community. You will also learn about how to start and run groups and organizations.
What does living in my community mean?
Practicing faith is an important part of living in the community for many people. Communities often have churches, synagogues, temples, and other places of worship. Attending these places in the community is a way of life for many people. It can also help them stay connected with their friends and family members.
Going to school is also key to staying connected with your community. Communities include schools for children and adolescents. Communities also often include schools for adults, such as colleges, universities, and vocational schools. They learn new knowledge and skills in these schools to help to get a job. The places where people work can also be an important part of the community.
Self-advocacy can help you to participate actively in your own community. You can speak up and advocate for what you want to do in your community. You can advocate for making your own choices in life. You can also speak up and advocate for the rights of other people.
How can I vote in my community?
The right to vote means you can help decide whom to elect to the government. Some people vote by going to a place in their community like a school, library, or police station. Other people vote by mail or with an absentee ballot.
The first step in voting is registering to vote. You can register to vote at the library or the Board of Elections. Some communities also let you register to vote online. If you need help registering to vote, visit your town hall or city hall. You can also visit the website www.vote411.org.
How do I stay healthy in my community?
Places in your community can help you stay healthy. You might go to the doctor’s office for check-ups to make sure you stay well. You might also visit your doctor or a hospital to help you get better when you get sick.
Health and fitness places can also help you to stay healthy. Many people have memberships to gyms, recreational centers, and pools. They exercise by using fitness equipment or playing indoor sports like swimming. Other people stay healthy by jogging, playing outdoor sports like baseball. Sometimes, people add other activities to make staying healthy and fit fun. They might take photographs of places they visit while exercising and staying fit.
Eating healthy foods can also help you stay fit. You can include fruits, vegetables, and protein to maintain good health. Drinking water and other healthy liquids can also help you stay healthy. Your doctor can help you select nutritious foods for your diet.
While enjoying a healthy diet, make sure to get a good night’s sleep. Stay away from activities that are not healthy. For example, refrain from smoking cigarettes or e-cigs. Your doctor can help you take steps to quit smoking if you need help.
How does good language make communities welcoming?
Language that is not respectful can demean the lives of people with disabilities. It also harms their sense of self and self-worth. Slurs like the r-word have no place in our society.
You can advocate for others to use respectful language. When people do not use respectful language, you can speak up to express your concern. You can teach them about what respectful language is. You can also let them know how important it is to you and many other people.
What does self-advocacy mean?
Self-advocacy has a few different important parts to it. Self-advocacy requires that you:
Know yourself well.
Know your rights and resources.
Learn how to express yourself well.
Serve as an active leader.
The first part of self-advocacy is getting to know yourself better. Getting to know yourself better means thinking about all that makes you, you! What do you do well and not do well in life? What are you dreams and goals for your own life? What are your beliefs and values?
The second part of self-advocacy is getting to know your rights and resources. Getting to know your rights means learning about federal and state laws that protect your rights. Getting to know your resources means learning about what can help you exercise your rights. It also means finding resources that can help improve your self-advocacy.
The third part of self-advocacy is getting to know how to express yourself well in life and work with others. Expressing yourself well means sharing what you need and value in a way others understand. It also means listening to what others have to say. Effective self-advocacy requires that you learn how to negotiate with others and make your case. You cannot simply tell others what to do.
The fourth part of self-advocacy is becoming an active and engaged leader. Leadership can mean leading things in your life and driving your life forward. Leadership can also mean starting a group to help others achieve self-advocacy. It might also mean helping to run groups or organizations.
- Self-Advocacy is…
- Exercising your voice.
- Working with others to help get your needs met.
- Listening to what others say.
- Expressing yourself clearly.
- Knowing your rights.
- Knowing your resources.
- Advocating for healthy living for yourself
- Self-Advocacy is not…
- Letting others speak for you.
- Commanding others to meet your needs.
- Tuning out what others have to say.
- Expressing yourself without clarifying your thoughts. others to meet your needs.
- Relying on others to know your rights
- Not knowing about your resources
- Not advocating for your right to a healthy life.
How diverse is self-advocacy?
Self-advocacy means something different to everyone in life. For some of you, self-advocacy might mean advocating for where to live and work. For others of you, that might mean advocating for the rights of other people.
Self-advocacy also means something different at different stages in life. For students in middle school or high school, self-advocacy might mean advocating for what classes you take. It might also be about advocating for your participation in clubs, school activities, and sports.
For those of you who have finished high school, self-advocacy might be about where you want to work and live. Self-advocacy might help you ask for supports or help to get your job done. It might also be about advocating for your right to find a partner in life and raise a family.
This is your journey. Self-advocacy means taking control of your life. It also means doing what you need to do to help you realize your dreams.
What are my rights?
However, this was not always the case for many people with disabilities. People with disabilities in our country have often found barriers that stopped us from accessing opportunities. Schools, workplaces, and events were often not accessible to people with disabilities. People without disabilities often did not want to accommodate people with disabilities.
In 1990, the Americans with Disabilities Act (ADA) helped change all this. The U.S. Congress passed the ADA to improve opportunities available for all people with disabilities. The ADA protects our civil rights. Other laws help ensure that we can vote and participate in our communities.
The federal government has a law called the Developmental Disabilities Act. This law helps protect the rights of people with intellectual and developmental disabilities. Many states have also passed similar laws.
Chapter 2: NACDD’s Leadership Circle
What is NACDD?
NACDD also partners with other national organizations to help them do their work. For example, NACDD made this e-book in cooperation with OPTUM. OPTUM is a national health services company. OPTUM works to bring quality heathcare to everyone.
The Councils work on how to improve services for people with disabilities. They also support work to improve advocacy for people with disabilities. Members of the Council come from three roles. Most Council Members are people with developmental disabilities or their family members. Other Council Members represent state agencies in the government and partner agencies.
Members of NACDD’s Self-Advocates Leadership Circle have served on the Councils in their home states. They have also served as leaders in their home communities. You can also find more about your own Council in your state or territory by visiting NACDD’s website.
What is the Leadership Circle?
Members of the Leadership Circle have achieved success in school, work, and advocacy. Many of them have led or started new organizations. Other Leadership Circle members have advocated for laws to improve opportunities for people with disabilities. They joined the Leadership Circle after their Councils nominated them. NACDD selects new members to join the Council from a pool of nominations.
You will learn more about life achievements of the Leadership Circle members in this chapter. You will also learn firsthand from their stories and experiences. They will also share what self-advocacy and living in the community mean to them.
Leader: Santa Perez
Home State: Nevada
Santa has served as the president of People First of Nevada, a statewide group with seven chapters. Santa has also served on the Nevada Governor’s Council on Developmental Disabilities. In 2013, NACDD awarded Santa their Champions of Equal Opportunity Award.
“[The] best [part] about me is being a mom. It took a long time, but I love it.”
What does the word self-advocacy mean to you?
“Self-advocacy means knowing who you are, showing who you are, and defending who you are. [I’m a] fighter and will never back down if I know something [is] not right.“
Leader: Aaron Snyder
Home State: Wyoming
When meeting new people, Aaron self-identifies quickly as a speaker with cerebral palsy. Aaron feels a need to disclose because people can make judgments about his disability. Aaron thinks that self-advocacy is important to have a strong voice for people with disabilities.
“I’m doing what I enjoy of doing disability [themed] comedy” [and] challenging] stereotypes of people who have disabilities. It’s about being who you are. There is a lot of pressure to not be yourself.”
What do you want other people to know about self-advocacy?
“Their voice in the world matters regardless of what one says.”
Leader: Sandy Houghton
Home State: Massachusetts
Sandy has written a book called Wealth of Relationships. She was also the first recipient of the Barbara Gopen Fellowship.
Why is living in the community important to you?
Do you self-advocate at work or in school?
Leader: Eric Stoker
Home State: Utah
He has testified at the Utah State Capitol on behalf of the Council and services for people with disabilities. In 2014, NACDD awarded him their Champion of Equal Opportunity Award.
What is most important about your personal life story?
How have you helped other people improve their self- advocacy?
Leader: Shiloh Blackburn
Home State: Idaho
Shiloh has served as the treasurer of the Idaho Self-Advocate Leadership Network. She also served as president of the group when it transitioned to an independent nonprofit organization.
What does living in your community mean to you?
Why is self-advocacy important to you?
Leader: Erlinda (Lynn) Tydinco
Home Territory: Guam
Leader: Janice Cathy Enfield
Home State: Missouri
Cathy has served as the vice president of Self-Advocates Becoming Empowered. She has also served on the Planning Committee for the Disability Policy Seminar. Cathy advocated for better access to technology. She also advocated for the Senate to ratify the CRPD, a treaty on disability rights.
Leader: Kathy Bates
Home State: New Hampshire
Kathy served as the group leader for the Leadership Series of the New Hampshire Institute on Disability. She also served as an advisory board for New Hampshire People First and as SALT’s facilitator.
Leader: Carrie Raabe
Home State: Arizona
Carrie has presented at TASH’s conference and at the Arizona Department of Education. She has also presented at Northern Arizona University (NAU) and Arizona State University. Carrie has served as a disability expert for NAU as a workgroup member.
Leader: Cindy Bentley
Home State: Wisconsin
Cindy has worked as an advocacy specialist for 14 years. She has presented to more than 4,500 students and spoken around the country. Cindy co-founded People First Wisconsin. She was the first self-advocate to serve as its Presidents.
Leader: Marisa Laios
Home State: Virginia
Marisa has served as Vice President of the Arc of Northern Virginia. Marisa is a member of the Virginia Developmental Disabilities Council and Voices of Virginia, a People First chapter. Marisa volunteers with a lost dog and cat foundation. She has also served on several workgroups about Medicaid and a settlement with the U.S. Department of Justice.
Leader: William Lovell
Home State: Tennessee
William assists Meals on Wheels and the heritage festival in Tennessee. He is a certified trainer for Person-Centered Planning through the People Planning Together Project. William helped lead his chapter of People First Tennessee during a rough period for the group. In 2008, he received the Self-Determination Award for Tennessee.
Leader: Kelly Holt
Home State: Utah
Kelly has served on the Advisory Council for the Center for Persons with Disabilities. She has also served on the Board of the Disability Law Center. In 2005, she inspired Utah Governor John Huntsman to name March as National Disability Month. She spoke out about how respectful language matters. Kelly has also spoken out against bullying. Kelly advocated for a law, HB-230, that removed unwelcoming language.
Chapter 3: Learning and Practicing Self-advocacy
Improving your Communication
Some people have found public speaking helpful to improve how they communicate with others. Public speaking is like any skill that gets better with practice. It can feel very uneasy at first when you set out with little experience. However, public speaking can become much easier when you do it regularly. Try practicing public speaking with your friends and family members.
Try speaking at first to smaller groups of people. They might even be people you know well and who have supported you. You can even do mock speeches in front of a friend or family member. With support, you can speak regularly to small groups. When you feel comfortable, you might start speaking to larger groups. You could speak at conferences and rallies, for instance.
Practice can also help you learn to express yourself better in writing or with pictures. If you write more often, you will find it easier to write letters, emails, and documents to help you self-advocate.
Interviewing can be another way to practice how you can communicate. You can try interviewing friends and family members to learn more about them. Before you do this, think of some questions to ask them. You might want to practice asking interview questions in a mirror first before you interview someone.
Learning About Your Rights
You can learn more about your rights under these laws through many activities. You can read about your rights by visiting websites, watching educational videos, and reading books. (The last c hapter about resources shares some of these books, videos, and websites.)
You can also learn about your rights by talking to your friends and family members. You and your friends and family members can discuss your rights together. You can also have mock sessions in which you do role-play how about how laws protect your rights.
For example, you could do role-play about your rights when speaking with policy officers or going to court. You might also do role-play about your rights where you work or go to school. Your family members and friends can also share with you books that can teach you more about your rights.
You can also learn more about your rights by visiting a resource center. If you are a person with a disability, you can call or visit a nearby Center for Independent Living (CIL). More than 500 CILs around the U.S. provide information on how to help people with disabilities live independently.
Learn more about yourself
These activities can teach us to think about what we do well and what we do not do as well. We can also learn to think clearly about our goals, aspirations, and dreams and what will help us to get there. This includes supports and services that can help us live healthy lives in our communities.
Sometimes, participating in an interview can help us to learn more about ourselves. The person interviewing us might ask us questions we might not have thought about that often. The interview might also help us think about our goals and dreams, and how we could accomplish them.
Learn about leadership
Help from technologies
Chapter 4: Becoming an Effective Leader
How can etiquette help my leadership?
Meeting others’ expectations for how we present ourselves is a big part of professional etiquette. For instance, others may expect you to wear certain clothes for meetings with leaders. You may also want to make sure you hair looks presentable. This might mean using a comb.
You will usually want to wear formal clothing to meet with legislators, their staff, and other officials. Big meetings (known as conferences) often expect you to wear formal or semi-formal clothing to events. Sometimes people call this clothing style business casual.
However, these big meetings may also have casual events that do not require formal clothing. For example, some conferences have dances or events like karaoke. If you have any doubt about what to wear, you can always ask others attending the conference or event.
How can mentors help me be a leader?
Mentors will be there to help you handle challenges, and they will provide advice. You can meet mentors at conferences and other gatherings of people. You may also meet mentors through your friends or while talking online.
Sometimes, some people may be a better fit to be your mentor than other people. A good mentor is someone who can listen to you, broaden your views, and help you grow. Good mentors should also be willing to learn from you, as well. They can learn from your experiences to help themselves grow.
Mentors often wish to give assistance as a way to pay it forward for help they received. Many of you mentors have had their own mentors to help them handle challenges in life.
How can teamwork help me become a leader?
You can practice teamwork by working with others on group projects. You can work with other persons to write an article together. This article might be for a newsletter, a book, your group, or something else.
You could also work with others on other projects. You might build or create things together, such as a large artwork or photography project. You might also volunteer with a group of others at a community center, shelter, or other place.
How can I start and lead a group about self-advocacy?
If you find a group for self-advocacy in your state or territory, ask them about how you can get involved. Tell them why you are interested in joining the group. Share your own personal story with the members of the group. Then, listen to and learn from the group members’ stories.
You can tell the group about what you want to help them accomplish. You can talk about what you do well and how you can help the group to get things done. Talk to them about your leadership skills and what else you can contribute to help the group be successful.
You can also start a new group for self-advocacy with help from other people you know. They may be leaders in your state or people in other states who run groups. You may also be able to get support from your state government or other organizations.
How can I meet with policy makers?
Usually, you will want to call their office or make an appointment on their website. Sometimes, you can also meet with policy makers at town hall meetings and similar forums. Below is an example of an email sent to make an appointment with a state legislator:
Subject: Scheduling an appointment
Dear Mr. Darrow,
I would like to make an appointment to meet with you. I would like to meet to discuss the SB502 bill.
Let me know if I could meet with you this week. I am available to meet after 1 pm on any day this week.
Sarah Lagndon, Biloxi, MS
Make sure you bring a business card or other way to contact you to the meeting. The staff member or elected official may want to contact you to meet with you again. They may also be interested in meeting with other people you know who can talk more about your issue.
If you belong to a group, your group may often meet with policy makers. Ask your group leaders about how you can get involved. You might attend meetings with other members from your group. You could also help prepare notes and other documents that your group might need for the meeting.
Meeting Public Officials
- Prepare for your meeting.
- Dress professionally.
- Bring your notes with you.
- Practice meeting with others.
- Find transportation to the meeting.
- Take notes during the meeting.
- Listen actively to the discussion.
- Come to your meeting without preparing.
- Dress too casual.
- Leave your notes at home.
- Forget to practice with others.
- Have no way to get to the meeting.
- Have no way of taking notes during the meeting.
- Speak over others without listening to them.
You can also contact public officials by writing a letter. In this letter, you can express your view on an issue. Below is an example of a letter written to a state representative:
50 Fern Drive
Jackson, MS 39202
June 1, 2015
The Honorable John Blackridge
PO Box 542
Jackson, MS 39202
Dear Representative Blackridge,
My name is Richard Appleman. I live in the eastern section of Jackson, MS in your district. I have cerebral palsy.
I write to you to express my interest in increasing funding for services. Mississippi needs better services to help people with disabilities. We need services to help us get and keep jobs. We also need better services to make sure that we can live well in our own community.
I ask you to please show your support for SB502. SB502 is a new bill that increases funding for services.
Thank you for reading my letter.
Setting an example in your leadership
You can set a good example by showing respect for others when you lead. You can also learn and help others practice good etiquette.
The Sandy Houghton Story
Film Trailer Number 2:
Film Trailer Number 3:
Aaron Snyder’s Disability-Themed Comedy Shows
Sir Disney video (2014):
Eric Stoker’s Testimony before the Utah State Legislature
I am here representing the Council and to thank you for your past support of programs that promote opportunities for people with disabilities. Today, I ask you for support in this year’s legislative process to continue the basic programs at DSPD that helps each year thousands of families and individuals with disabilities across Utah.
I am here today because I know the basic supports and services like respite care, self-administered services, support for people to remain out of more expensive institutions, and other programs work—these programs work well.
DSPD works closely with us on the Council. We consider at each Council meeting how to improve each program. DSPD’s basic budget is basic—many families are waiting for support—to cut services from these core programs may place families in higher cost needs later or even in crisis.
We support the Governor’s budget this year for DSPD. Paul Smith, DPSD’s director, will give you the details of each program. I am here to give the statement of support and to let you know we work every day build better programs that provide just a bit of assistance families need. This support makes all the difference.
We ask for your continuing support to Utahns with disabilities and their families that need DSPD’s services.
Sandy Houghton’s Testimony to the U.S. Administration on Intellectual and Developmental Disabilities (2010)
First, I’d like to take a moment to tell you a little bit about myself. Growing up as a middle child, I experienced first hand the challenges a student with a disability faces. My older brother could do no wrong. My little sister had the looks and the brains. But I was the disabled kid. I did not have the same opportunities that my brother and sister had. I didn’t have the friends or social experiences they had such as sleepovers, big birthday parties, or attending school dances.
As for my school years, the way that I talked, walked and dressed made me a target for bullying. It was difficult to succeed in an environment that did not offer any services to support my needs. It was near impossible to make friends. There were some caring teachers that offered support, but as a whole, systems were not in place to help me. I graduated at the bottom of my class. And I struggled as a young adult to find meaning and purpose in my life. Unfortunately, this sounds no different than what most students with disabilities still face decades later.
I was fortunate as an adult to connect with people who helped me to eventually find an identity and a purpose. It was a long and often painful experience. But I am a better and happier person for it. And what I learned from that journey is that the skills that were most important for me to grow didn’t come from a textbook or a classroom. They came through developing what professionals today refer to as “soft skills”. Joing a self-advocacy group, being a member of the DD Council and serving as a Gopen Fellow provided me a great opportunity to hone these skills, and I have dedicated my career to working with people with DD to also develop these skills in order to succeed in life.
As a self-advocate who teaches self-advocacy and leadership to people with developmental disabilities, I believe that it is critical to teach self-awareness and social communication to students in transition. Youngsters and teenagers without disabilities learn these skills through peer interaction, social opportunities, school sports, and the like. Skills such as making and keeping friendships, being a good listener, being a team player, and being assertive as opposed to aggressive are what contribute to future success as an adult. It is through these experiences that students get to put such skills to practice and build self-confidence. But the school environment provides little or no opportunities for most people with disabilities to develop these skills.
While it is true that many of these skills are introduced in the home, in today’s society many households rely on two incomes, parents are inundated with multiple responsibilities trying to support the household and take care of their other children, on top of trying to navigate the complicated systems to find support for their children with disabilities. There is little time to teach soft skills to a child with a disability in the home. The workforce that students in transition are preparing to enter, have an expectation that they will possess the fundamental skills needed to work with others, and that they understand the importance of basic things that we all take for granted, like good hygiene practices.
The leadership series that I created and teach to adults with disabilities uses an interactive learning environment that focuses on the person, teaching them about themselves, about their strengths and abilities. It introduces different ways that people communicate. The way our body language speaks to people even when we don’t, and how attitudes and feelings influence our behavior towards others. It teaches students how to work together, how to dress for success, and how to be part of a team. This program improves a person’s self-esteem, increases confidence to try new things, and assists them to develop the soft skills needed to succeed.
I struggled to get where I am today, and it pains me to see that young people are still facing the same struggles decades later. Understanding who we are, making a good impression and exercising basic social principles are a recipe for success. I propose that ADD must invest time and effort to develop and expand similar trainings and programs for students in transition, as well as young adults. Focusing on soft skills will enhance opportunities for students and young adults with disabilities to improve their social skills, increase their self-confidence and be productive members in the workforce.