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Art of Impact

In 2015, NACDD, in coalition with Optum, released The Art of Impact, an e-book written by self-advocates, for self-advocates.

Leader: Kathy Bates

Home State: New Hampshire

Kathy Bates has worked as a teacher, writer, advocate, and public speaker in New Hampshire. She has also served as the Chair of the New Hampshire Developmental Disabilities Council. Kathy has a degree in elementary education with an emphasis on special education from St. Andrews Presbyterian College in North Carolina.

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: Cindy Bentley
Home State: Wisconsin
Cindy Bentley grew up living in foster homes and the Southern Wisconsin Center. In 1991, Special Olympics awarded her their International Female Athlete of the Year Award. She carried Wisconsin’s banner in the 1995 Special Olympics World Summer Games. She has also served as a Global Messenger for Special Olympics since 2000.
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 President. During her life, Cindy has had dinner with two U.S. Presidents.

Leader: Shiloh Blackburn

Home State: Idaho

Shiloh earned an associate’s degree from the Ricks College and a bachelor’s degree from Idaho State University. She studied mass communications. Shiloh has served on the Idaho Developmental Disabilities Council and testified before the state legislature.

Shiloh 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.

Leader: Chris Blake

Home State: Connecticut

Chris Blake has been active as a self-advocate for many, many years. He had a brain injury at a very young age, has intellectual disabilities and some significant speech challenges. As a child, his parents were active in advocating on his behalf, and as an adult he has become a strong advocate for himself and others in the state. He is very well known by self-advocates, agencies and providers. In 2012 he was invited by the DDS commissioner to serve on a committee designing the new mission for the agency. This is where I first met Chris, and was amazed at his passion for the issues and his sense of fairness and justice. He has been active with the CT Cross Disability Alliance since its first meeting in 2012 and is actively involved in the advocacy efforts of the Alliance with Medicaid, DDS and the legislature. He takes an active role on at least three committees of the Supporting Families Community of Practice where he has made significant contributions to their work.

Chris lives in his own apartment in East Haven, CT and has support staff as needed. In 2014, he developed his own job description and then convinced one of the area providers to hire him. Chris is now employed in a paid consultant position by SARAH Tuxis Inc. as a policy liaison, and also serves on their Board of Directors. He is the first self-advocate to serve in this role.

Leader: Diana Braun

Home State: Illinois

As an eight-year-old child, Diana Braun found herself living in a state-run nursing home in Freeport, Illinois. Taken away from an abusive family, Diana and her brothers and sisters were scattered. At 12, she was sent to the Dixon Developmental Center. She vowed to one day close state run institutions and has devoted her life to doing just that. In her own words, “Institutions are not a safe place to be.”

At 19, Diana left Dixon. After meeting Kathy Conour at a sheltered workshop, a friendship began that lasted 42 years. She took on the ambitious job of personal assistant to her friend and housemate, Kathy. Fearful of being shut away in a nursing home or forced into an institution, they escaped the system. Determined to live independent, non-institutionalized lives and to earn more than menial wages at a sheltered workshop, Diana and Kathy moved to Springfield, built a house and successfully integrated into the community. The relationship between Diana and Kathy was documented in a film called “Body and Soul” that is described as:

“Body & Soul: Diana & Kathy, a PBS award winning film, looks at an unusual, symbiotic relationship between two people some would call profoundly disabled. In the film, two of the country’s most remarkable advocates for people with disabilities, Diana Braun, who has Down Syndrome, and Kathy Conour, who has cerebral palsy, met three decades ago and vowed to fight to live independent lives. Told in an intimate, vérité style, the film is a story of a compelling, creative friendship.”

Leader: Adonis Brown

Home State: North Carolina

Adonis Brown is a leading advocate for justice and equality for people living with disabilities. He focuses his efforts to promote socio-economic empowerment, independent living and community inclusion. Adonis co-chaired the NC General Assembly’s Developmental Disabilities Transitions Task Force, contributed to the designation of the NC protection and advocacy organization from the Governors Advocacy Council for Persons with Disabilities (GACPD) housed within state government to Disability Rights NC, a private not-for-profit and served on its board from 2007 through 2012. Adonis currently serves as President for The Arc of North Carolina and serves as Associate Chair for the NC Council on Developmental Disabilities. Adonis has also served on the Mayor’s Committee for Persons with Disabilities from 2002 through 2009. Adonis created EnVisioned Independent Living in 1998 to provide independent living and life skills consultation, provide mentorship, advocate for community inclusion and equality in areas of housing, education, recreation, transportation and employment.

Adonis is passionate in his efforts to change perceptions, promoting high expectations for all people. He works to eliminate low expectations and promotes the value of people with disabilities being fully included and contributing members of their community.

Adonis, for a time, worked closely with the Association of Self Advocates, NC (ASANC), serving on the board of directors. As a person with a disability, he seeks and serves in leadership roles designed to impact policy and opportunity. His efforts included supporting all with disabilities to be included in the self-advocacy association. He educated the board of directors regarding strong governance. He worked with members and the board of directors to strengthen the visibility and impact of ASANC. Adonis shares his personal story and uses current data and other information to strengthen his message. Adonis mentors self-advocates to be prepared when meeting with members of the public, potential employers, state-level policy makers, state and national level legislators.

Leader: Monica Cooper

Home State: Arizona

Monica Cooper was born in Illinois, and took the adventure of a lifetime as a child when she moved with her family to Israel for three years. She now lives in Arizona and enjoys reading, cooking pasta and arts and crafts—especially crocheting. She tried telemarketing once, and wasn’t a fan.

As an outspoken self-advocate, Monica is laser-focused on inclusion in all aspects of life. “I believe that all people with disabilities should have the same opportunities as everyone else,” she says. “All my life I was always given the opportunity to do something for myself. I’ve always made my own choices.”

She attributes that in part to growing up in general education classes alongside able-bodied schoolmates. Monica is a big believer in educating others, both individuals and those with disabilities.

Monica isn’t afraid to speak up to share her view and to fight issues for the benefit of others. After blazing through causes from ending the use of the “R” word to supporting service animals and minimum wage laws, she’s ready to tackle the limited opportunities for recreation among people with developmental disabilities like herself.

“Keeping quiet doesn’t get you anywhere,” she said. We agree, Monica.

Leader: Morgan Davis

Home State: Oklahoma

Morgan Davis is currently a student at Rose State College (RSC) in Oklahoma City, where she is studying Special Education. Recently Morgan was appointed to the Oklahoma Developmental Disabilities Council (ODDC). In addition to that, Morgan is a graduate of the Oklahoma Youth Leadership Forum, the ODDC’s high school leadership and advocacy program for students with disabilities. She is also a stakeholder on the Oklahoma Communities of Practice, discussing ways of helping to support families.

Morgan plans on continuing her advocacy by attending Partners in Policymaking (PIP), the ODDC’s adult disability advocacy training program. Morgan has begun speaking to audiences about her experiences as a person with a disability. She spoke to Teacher Assistants about disability awareness and most recently at the Take Root: Red State Perspectives On Social Justice, speaking about sexuality and disability.

When Morgan isn’t attending class or meetings, Morgan enjoys hanging out with her friends and indulging in her love of pop culture.

Leader: Janice Cathy Enfield

Home State: Missouri

Cathy Enfield is the vice president of People First of Missouri. She serves on the Missouri Developmental Disabilities Council and chairs the Home and Community Living Committee. Cathy has also chaired the Board of Directors of Missouri Protection and Advocacy Services. In 2008, she received the Anita Carroll Self-Advocate of the Year Award.

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: Kelly Holt

Home State: Utah

Kelly Holt lives with her sister and father in Utah. She is self-employed as a beauty consultant. Kelly has served as the chair of the Utah Developmental Disabilities Council. In 2008, the Council awarded her their Self-Advocate of the Year Award. NACDD awarded her their Champions of Equal Opportunity Award in 2012.

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.

Leader: Sandy Houghton

Home State: Massachusetts

Sandy Houghton was featured in the documentary, The Sandy Houghton Story: An Inspirational Journey. She started working with people with disabilities when her daughter was diagnosed with Alpers Syndrome. She started an open door club as a local self-advocacy group.

Sandy has written a book called Wealth of Relationships. She was also the first recipient of the Barbara Gopen Fellowship.

The Interview
Why is living in the community important to you?
“I have lived in the town of Hadley, Massachusetts most of my life. … The community is important to me because I have connections in the town I grew up in. It has a family history.”

Do you self-advocate at work or in school?
“At times it can be hard to self-advocate at work for something I might need to make my job easier. … Sometimes it takes a co-worker to up on my behalf.”

Leader: Tina Jackson

Home State: Kentucky

Tina Jackson’s reality for the past 30+ years has been one of PEG tube feedings, total silence due to stroke and increasing issues with vision and balance.  Yet, she feels blessed to live in a time of great advancements in technology.  When she was born, the doctor saw that when she cried she turned blue around the mouth.  By 18 months, her mother noticed that when she crawled she was pulling herself with her right hand and foot across the floor.  An enlightened pediatrician took one look at her and said two words that were completely unknown to Tina’s family…Cerebral Palsy.   At that point, Tina began her formal education of learning to be an independent person.

Between the 1980s and ‘90s, she worked in the fields of social work and medical records.   It was during this time period that Tina suffered a number of physical setbacks, from the onset of seizures to having a stroke.  Several new disabilities resulted, including the loss of her speech and part of her vision, as well as problems with eating and drinking. Swallowing tests showed she was aspirating and this led to the placement of a PEG feeding tube.  Soon after this, Tina decided that she could no longer work in the traditional work force.  By 2000, more assistance was needed due to progression of CP, post stroke central nervous system damage and vision/balance problems.  She used a small cart for assistance in balance, which allowed her to continue being ambulatory and active in the community.  Vocational Rehabilitation gave her a communication device which allowed her to be a speaker at several events including keynote speaker at the Perkin’s Center graduation in 2011.  She was a governor appointed member of Kentucky’s Commonwealth Council on Developmental Disabilities and is an active volunteer at her church.  Tina and her husband have co-chaired a committee for the past 14 years that organizes the annual Appalachian Bike Tour Scholarship Ride.  She is currently self-employed in marketing and selling a patented assistive device, The Jackson Peg Tube Stand, invented by her husband to assist people in regaining/maintaining their independence. 

At 59, Tina considers herself blessed to be able to continue being productive and enjoying life.  She has joined a Crossfit group to gain strength and flexibility and recently competed in a regional event.  She also did her first “truck pull” and has learned to use a rowing machine and to toss an atlas ball with one arm.  She says that the hard times are softened by her successes and that she is grateful for the strength she has gained from them.

Leader: Jennifer Karner

Home State: Oklahoma

Jennifer Karner is currently a student at Oklahoma City Community College (OCCC), where she is studying Child Development.  She is a student employee of OCCC’s Child Development Center, working with Preschool Teachers, Teacher Assistants, and Preschool-aged children. 

Jennifer is a member of the Oklahoma Developmental Disabilities Council (ODDC) as well as a student in the ODDC’s Partners in Policymaking (PIP) program.  PIP is a disability advocacy program for individuals with disabilities, parents and/or family members who have children with a disability, and professionals.  Jennifer is a 2009 graduate of the Oklahoma Youth Leadership Forum (YLF), which is a leadership and advocacy program designed for high school students with disabilities.  She has returned to YLF for several years, acting as a mentor to students. 

Jennifer has presented nationally on subjects concerning disability and disability advocacy.  Her topics include self-advocacy in the hospital and in higher education.  Recent conferences include the 2014 Self-Advocates Becoming Empowered (SABE) Conference, Transition University, and the Association of Interdisciplinary Studies National Convention in 2015. 

Jennifer is involved in her church, playing trumpet, and is an avid runner, participating in many 5Ks and recently completed her first 10K.  She enjoys spending time with her family and friends.

Leader: Marisa Laios

Home State: Virginia

Marisa Laios is a 2013 graduate of Virginia’s Partners in Policymaking program. She is also a 2011 graduate of the Virginia Youth Leadership Forum. She received her associates degree in general studies from Northern Virginia Community College.

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: Kathy Leigh

Home State: Florida

Kathy Leigh is a self-advocate who has owned her own home since April 1, 2000 and lives independently in her community with supports. She has been a Council member since August of 2010, and served in numerous capacities with the Council. Kathy moved to Florida to live with her sister in 1992. She initially attended the local Arc, but by 1994, Kathy was living in her own apartment and working for Boone Waste as a receptionist. She left Boone Waste late in 1994 when the company transitioned to a computerized process. She secured employment as a greeter at WalMart in 1994, and retired after nearly 15 years of employment. She later worked as a receptionist for the Arc for five years. Since 2012, Kathy has performed some consultant work as a receptionist, and more fully vested her energies into the work of the Florida Developmental Disabilities Council as an active, appointed member.

Kathy has conducted a number of presentations in surrounding counties for such entities as the Arc and an institution in order to share information and build interest in inclusive community living and supported living. She has served as a panelist for Support Coordinator Statewide Training, explaining transitioning into supported living and the impact on her life. Kathy also served as a Charter Member of Lions Clubs International in her community. She was engaged in many of these activities long before coming to the Council. She has also been featured in her local newspaper and in newsletter articles, speaking on such topics as living with disability and what it means to dream and succeed. Kathy is a Florida Partners in Policymaking graduate, and she has participated in state and national events such as the annual NACDD conference and Florida SAND annual conference.

Leader: William Lovell

Home State: Tennessee

William Lovell has worked at Walmart since 2002. He attended Buffalo River Services vocational development program after high school. William is a member of People First Tennessee and the Lewis County Historical Society.

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: Santa Perez

Home State: Nevada

Santa Perez owns her own house in Nevada. Santa is the mother of a 13-year-old son. Santa thinks that self-advocacy is very important to being active in life in the community.

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 Interview

What do you like most about yourself?

“[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: Carrie Raabe

Home State: Arizona

Carrie Raabe serves as the chair of the Arizona Developmental Disabilities Council. She is the first person with a developmental disability to serve in this role. During high school, Carrie served on the speech and debate team and the forensics team.

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: Robbie Reedy

Home State: Minnesota

Since the age of 18, Robbie lived in group homes, including living in a “rough place” for seven years. He enlisted the help of family and “great friends” to move out of that environment and is “now very happy to be where I am in life.”

Robbie likes music, being with people, enjoys a good cup of coffee and is working on his first book.

Robbie is thoughtful, reflective, and reserved, yet speaks from experience and directly to the issues that impact individuals with developmental disabilities and families. He is an exemplary model for self-advocates. He has always wanted to be a self-advocate and life circumstances have given him opportunities to hone the self-advocacy skills that he seems to come by so naturally.

As a Partners graduate and Council member, Robbie has effectively demonstrated to other people that anyone can do what they put their heart and mind to. He teaches by example and is open to learning more from individuals around him. At his graduation from Partners, Robbie said that he “learned a lot. I have new friends to teach me about disability even though I don’t have any kids. You parents have taught me.”

Robbie is a Partners in Policymaking graduate. During the Partners training program year, he freely shared his story, acquired a new network of like-minded individuals, and was not reluctant to encourage other self-advocates to speak up and be heard as the policymaking process was explored at county, state, and federal levels of government.

Robbie is currently serving as co-chair of the Council’s Public Policy Committee where he will add his input and opinions as policy issues are discussed.

Leader: Tricia Riccardi

Home State: Florida

Tricia Riccardi is a self-advocate, wife and mother of a four-year-old. She has been a Council member since September of 2010. In this time, she has been very involved and attended everything possible. In 2011, she was selected as co-chair of the Self-Advocacy Leadership Task Force, and then became chair of the Task Force in 2012, where she continued to serve through 2016. Tricia also served as a member of the Community Living Task Force from 2012 – 2016.

Tricia was voted in as a member-at-large in 2012 and served the full two-year term on the Executive Committee. After serving as a member-at-large, she served as vice-chair of the Council from 2014 – 2016. She has participated in the Maryland Alliance for Full Participation conference, two annual NACDD conferences, two Disability Policy Seminars, and two SABE (Self Advocates Becoming Empowered) conferences. She is a graduate of the Delaware Leadership Institute. Most recently, she became a 2016 Florida Partners in Policymaking graduate and received the 2016 Partners in Policymaking annual award.

Tricia holds a Bachelor’s degree in Public Administration with a minor in non-profit management. She worked for Easter Seals in the administration department from 2004-2005, and she founded and operated a non-profit to assist people with disabilities from 2006-2010. Tricia stated that she believes the biggest accomplishment of her time on the Council was getting income limits into the state plan. She noted that it will impact so many self-advocates if we can bring about this change.

Leader: Ross Ryan

Home State: Oregon

Ross Ryan is a paid Community Advocate who represents people with intellectual and developmental disabilities across the state of Oregon. In his role as a Community Advocate, he speaks on behalf of other people with disabilities that cannot speak up for themselves.

He currently is a member of many committees that drive important systems and policy change including the Oregon Employment First Executive Order Stakeholder Group, the Oregon Health Authority, Ombuds Advisory Committee, the Intellectual and Developmental Disability Budget Stakeholder Group, the Oregon Medicaid Advisory Committee, the Office of Developmental Disability Services Individual Support Plan Revision Work Group, and the Department of Labor Work Group. He is the lead for Oregon’s Developmental Disability Advocacy Days at the State Capitol, the co-creator of Oregon “peer-to-peer” employment project to transition people out of sheltered workshops, a leading voice in the Lane v. Brown Settlement Agreement and a well-known local, state and national speaker on disability rights.

Leader: Aaron Snyder

Home State: Wyoming

Aaron Snyder works as a comedian and a motivational speaker in Wyoming. He has served on the Wyoming Governor’s Council for People with Developmental Disabilities.

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.

The Interview

What is most important about your personal life story?

“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: Eric Stoker

Home State: Utah

Eric Stoker lives with his family in West Jordan, Utah and works for the Utah Developmental Disabilities Council as the Information Specialist. He has served on the Utah Parent Center Board of Directors, People First of Utah Board of Directors and the Consumer Advisory Council at Utah State University representing the voice of self-advocates. Eric is also the consumer faculty for the URLEND program at Utah State University.  Eric has spoken nationwide about issues that affect people with disabilities, autism and his life experiences. He received the Champion of Equal Opportunity Award from the National Association of Councils on Developmental Disabilities in 2014. In his free time, he attends Utah Utes basketball and football games with his family and he is also the manager of West Jordan High School’s basketball team. He is also an avid train buff and has amazing knowledge about the past and current railroad systems in Utah and throughout the United States. He is also a huge basketball fan.

The Interview

What is most important about your personal life story?

“Teaching and telling others about autism when I speak up at Weber State [is important]. It’s been hard because people don’t understand my disability.”

How have you helped other people improve their self-advocacy?

“I spoke at West Jordan High’s Special Ed classroom about self -advocacy. I also helped mentor South Valley’s People First group on voting.”

Leader: Erlinda (Lynn) Tydinco

Home Territory: Guam

Lynn serves as the president of People First of Guam. She also serves on the Guam Developmental Disabilities Council. Lynn is in her second term as Chair of the Council. She has worked as a telephone operator, and statistics coordinator. Lynn has also worked as an office manager and entertainment promoter.

Leader: Andre Williams

Home State: Massachusetts

Andre Williams is a young leader in the self-advocacy movement. He is a successful trainer, public speaker and advocate for himself and others with disabilities. Andre has a passion for empowering people with disabilities, possesses an exceptional talent for teaching other self-advocates, and is considered a leader among his peers. In addition to his job as a self-advocacy leadership trainer, Andre is active in Best Buddies and serves as an ambassador for Best Buddies at the National Best Buddies Conference. Andre says, “I like teaching the SALS classes because it allows me to follow my goals in life- one of my goals is to be passionate about something that I love—being an advocate and teaching others how to advocate for themselves are two of the things I am most passionate about."

For the past 3 years, Andre has worked as a Lead Trainer for the Self-Advocacy Leadership Series (SALS) sponsored by the Massachusetts Developmental Disabilities Council. In his role he leads and facilitates discussions and group activities focused on the fundamentals of self-advocacy and leadership. To date Andre has taught over 105 students with developmental disabilities.

Andre also works as a trainer for Massachusetts Advocates Standing Strong, the statewide self-advocacy organization. Andre teaches the Explore, Prepare, Act program providing monthly trainings to individuals with disabilities on how to find a job in the community.

Andre was selected to begin training the new Legislative Advocacy class under the Council’s Independence College program. This program helps people with developmental disabilities learn the important skills needed to pursue a life of independence.

In high school, Andre joined his school’s Best Buddies chapter. Being involved in Best Buddies boosted his confidence and opened him up to meeting new people and engaging in new experiences. Upon graduating high school in 2010, Andre began serving as a Buddy Ambassador for Best Buddies International and eventually became a member of their Young Leaders Council. As a Buddy Ambassador, Andre has done numerous public speaking engagements including addressing a crowd of over 2,000 people at the annual Best Buddies Challenge bike ride. As a member of the Young Leaders Council, Andre works with other young self-advocates to develop improvements to the Best Buddies program including by teaching workshops at the International Best Buddies Leadership Conference. Andre is also a member of the Best Buddies Suffolk University chapter, dedicating himself to raising public awareness about the “spreading the word to end the word” campaign. Andre has both written a blogpost and spoken publicly about the need to limit the use of derogatory words and to promote respect for all people with disabilities.

In his work as a trainer for the Self-Advocacy Leadership Series, and as a teacher for Explore, Prepare, Act and Independence College, Andre has personally supported and mentored over 150 self-advocates in less than 3 years, and has reached hundreds more through public speaking and his services to Best Buddies.

Andre possesses an exceptional talent for connecting and bonding with people. He has a passion for empowering people with disabilities and encourages them to follow their dreams and believe in themselves. Andre Williams is a most worthy candidate for this award.

Leader: Betty Williams

Home State: Indiana

Betty Williams is a very well-known individual, not only in her local community, but also throughout Indiana, and on the national level. Betty is known for her determination and leadership, commitment to advocacy, but most importantly, she is recognized for making a positive difference in the lives of people with intellectual and developmental disabilities.
Betty Williams is the Consumer Education and Training Coordinator at The Arc of Indiana, a position she has held since 2006. Ms. Williams has served as Secretary of Self-Advocates Becoming Empowered since 2012 and as a Lay Member of the Indiana Developmental Disabilities Legislative Commission since 1998. She served as President of SABE from 2010 to 2012 and as President of Self Advocates of Indiana (SAI) from 2005 to 2010. As Past President of SAI, Betty was one of the first individuals that Darcus Nims, founder of SAI, sought out to join her with her advocacy efforts. Betty accompanied Darcus across the state to speak with and advocate on behalf of people with intellectual and developmental disabilities. Betty was actively involved in the efforts that closed Indiana’s state institutions, and advocated with Darcus for the people who were moving out of those institutions and into the community.
In 2014, Betty was appointed to the Presidents Committee for People with Intellectual Disabilities, bringing her advocacy experience and leadership to the national level where she works with others from across the nation to address the lifelong issues facing people with I/DD and their families. She continues her life’s work of advocacy in the disability movement through her leadership and commitment to the various committees and taskforces she serves on, as well as maintaining a continued presence in the community.
Betty has participated in numerous committees to help move Indiana towards a state that is known for inclusion and accessibility; she has served on numerous local, state, and national committees, both government and non-government related, as well as various committees comprised of other local leaders, such as herself. These committees include, Self-Advocates Becoming Empowered (National), Self-Advocates of Indiana, The Arc of Indiana’s Governmental Affairs Committee, the Indiana Division of Disability and Rehabilitative Services Advisory Committee, and the Indiana Institute on Disability and Community Consumer Advisory Committee to name a few.
Betty Williams shares her story with just about everyone she meets. She knew that the life she was living was not one that she would have chosen for herself, and in response she adopted the “I can, I will, and I should” attitude when all she would hear was “Can’t, won’t, and shouldn’t”. Her dedication to achieving her own independence, by speaking for her wants, needs, and “cans” led her to a job where she shares those skills with others through trainings, interviews, speaking engagements, and one-to-one peer support. There is not a person Betty has not met who has not been proud to know her as a colleague, but also a mentor. When Betty shares her story, her audience listens, and more often than not begins to feel comfortable enough to share their own story.
Betty has lead numerous training sessions and workshops for Self-Advocates to help develop public speaking skills, as well as other ways that Self-Advocates can communicate effectively and broadly within their own community. She keeps an open mind about communication techniques, and when she has a new idea immediately begins to put together a plan on how to implement it; when one hears Betty say “I have an idea, and I know what I want to do and what it will look like” one knows that a plan is already forming and she will begin to implement it to further her advocacy work and support and empower others as they find their voice. One of Betty’s most outstanding and longest lasting impact is her involvement in assisting with the closure of Indiana’s state institutions. She and other leaders of Self Advocates of Indiana, met with people with developmental disabilities who were living in state institutions to listen to their concerns about the future and help them understand the possibilities. By helping to close the state’s institutions, Betty has given people with disabilities in the opportunity to truly live, work, and play in their community. More recently, Betty has worked with the My Life, My Choice project to help individuals living in group homes and/or nursing homes explore community living options. Betty not only helped to develop the initial interview questions, but also conducted interviews with teams of self-advocates, as well as provided training to new interviewers as part of a training team.

By continuing to share her knowledge and leadership skills, Betty is providing the education and fundamental tools for self-advocates to advocate and be the change they wish to see in their community. Her continued participation in local, state, and national committees where she brings her knowledge and ideas to the table, help to get those around her thinking in terms of “I can” for everyone, and to ensure that no matter what, those initiatives are led by self-advocates. When Betty presents a new idea to continue advocacy, it always “Self-advocates can, will, and should be”, so that when change happens it happens through the leadership of the individual, not someone speaking on their behalf.
“[Self-advocacy] has taught me a lot about myself and shown me some strengths and weaknesses I have. It’s given me a purpose in life, a way to ‘pay it forward’ by helping and serving my peers with disabilities.” -Shiloh Blackburn
“At times it can be hard to self-advocate at work for something I might need to make my job easier.… Sometimes it takes a co-worker to up on my behalf.” -Sandy Houghton
“I believe that all people with disabilities should have the same opportunities as everyone else. All my life, I was always given the opportunity to do something for myself. I’ve always made my own choices.” -Monica Cooper
“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.” -Santa Perez
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