Introduction
by Bob Williams
There is credible evidence that people who are denied effective access to AAC, especially language-based tools, experience high rates of segregation, illiteracy, institutionalization, extreme isolation, dismal health care, violence, social death, and euthanasia. Some research exists on these matters. But far more comprehensive, rigorous, and participatory action research and development efforts are critically needed. We need to gauge and document both the magnitude and the real life toll such widespread cruel injustice has on individuals, families, communities, and the American people writ large.
To move toward communication equity and justice, we need research grounded in ethnographic, oral history, video storytelling, and similar research methods that chronicles the lives, dreams, aptitudes, and fears of both those who are. caught up in the cycle, as well as those of us who have escaped it. For we, possess much of the knowledge, insight, and urgency, that is pivotal to freeing others like us.
As I look back over the decades, it is clear that I am extremely fortunate to know, love, learn from, and emboldened by, other people who need AAC. Richly diverse, in their race, disabilities, so called intelligence quotients, languages, age, gender identity, culture, and life station. External and internal, oppression. Gnaws away, at one’s spirit, when we know we are completely alone. Misunderstood. Dismissed as someone, or something, who we know we are not. When there is no one we can turn to who has lived, felt, and experienced, our truth. Someone or better yet, several some, ones, around us who have lived lyves that if not the same, are vastly similar to our own. People who we can mutually support, learn with dream, and grieve with, and co create a more just world with. It is called peer support, among other things. And many of us freely offer and receive it every day without thought. It is essential and ubiquitous to us personally and for throwing off oppression of all degrees.
We at CommunicationFIRST believe greater justice will only come when people who need AAC bring it about together for all of us. This is why we are proud to be partnering with the Association of University Centers on Disabilities, and the Oregon Institute on Developmental Disabilities on a project funded by Administration for Community Living. The goal of this project is to explore ways in which people who need AAC are currently engaged in peer support as well as how such efforts can be made more universally available
Interview
by Lateef McLeod
As a person who uses AAC, please describe your earliest experiences meeting peers who also used AAC for communication.
My earliest memories of having peers who use AAC is when my friend Brent transferred to my elementary school, Springhill Elementary School. He was in the second grade and I was in the fourth. We were the only two students who use AAC at that school. The other experience I have is attending a camp put on by The Bridge School where I was able to meet and interact with other children who use AAC.
How did meeting peers who also used AAC influence your life?
Meeting other people who use AAC at an early age helped me understand that my method of communication was used by other people who were successfully navigating through life. Since I saw other people communicate with AAC successfully, it made me come to believe that there was nothing wrong with me or with the way that I communicate and if I met with resistance from other people because of the way that I communicate the problem is with them.
Have you previously been involved in peer support, either providing or receiving peer support? Please describe how that worked.
When I was the VP for people who use AAC at ISAAC I briefly set up an AAC mentoring program that had an international scope. Even though the mentoring program didn’t go exactly as planned, because it was hard to keep the mentoring program together throughout the months with people from around the world. But the project peeked my interest and I researched and studied AAC mentoring programs in my dissertation for my dissertation and saw how effective they were in teaching self-advocacy and leadership to people in these mentoring programs.
What do you hope this project will achieve?
I hope this project will achieve a better understanding of how peer supports currently work for people who use AAC and how we can improve of these peer supports for the future.
How can USSAAC help support this initiative?
I think USSAAC are already actively supporting this initiative by being active members of our AAC Consortium and that is a tremendous help. I also think if Speak Up or the AAC Journal could publish our findings after we finish the project that will be a tremendous help too.
About the Authors
Bob Williams
Bob Williams (he/him) co-founded CommunicationFIRST in 2019, after retiring from a distinguished four-decade career in federal and state government and the nonprofit sector, most recently as Director of the US Independent Living Administration at the US Department of Health and Human Services (HHS). He is a nationally recognized leader on policy issues relating to supporting people with the most significant disabilities to live, work, and thrive in their own homes and communities. When Mr. Williams was born with significant cerebral palsy in the 1950s, his parents were told to put him in a state institution and to never look back. His parents rejected that advice; he did not enter that institution until he was an adult assisting with the lawsuit that closed it down. As a teenager, he led a successful strike of students in his segregated special education class to fight for equal educational opportunities and inclusion in regular education classes. After graduating with a degree in Urban Affairs from George Washington University, he joined the team appointed to monitor the closure of Forest Haven, the District of Columbia’s institution for people with intellectual and developmental disabilities, advocating on behalf of 120 residents with complex communication, developmental, and health needs. Mr. Williams has also served as Deputy Assistant Secretary of HHS for Disability, Aging, and Long Term Care Policy, and Commissioner of the US Administration of Developmental Disabilities. He was HHS Secretary Donna Shalala’s principal advisor on the Americans with Disabilities Act (ADA), and he co-led the task force that developed the US government’s successful arguments in the Olmstead v. LC case before the US Supreme Court. Subsequently, he led HHS’s efforts to facilitate state implementation of the Olmstead decision to reduce the unnecessary institutionalization of people with disabilities and ensure they receive services in the most integrated setting appropriate to their needs. Mr. Williams has also served as head of the Social Security Administration’s (SSA) Office of Employment Support Programs, Senior Advisor to the Deputy SSA Commissioner for Retirement and Disability Policy, and has held positions with the United Cerebral Palsy Association, the Youth Policy Institute, and the US Senate Subcommittee on the Handicapped. He has served on the Boards of TASH, Quality Trust, and Hear Our Voices. A video of Mr. Williams answering questions about the passage and implementation of the ADA on its 20th anniversary can be viewed on YouTube. For over 60 years, Williams has relied on an array of AAC strategies, including a series of speech generating devices over the past three decades. He lives with his wife, Helen Rader, in Southwest Washington, DC, where they enjoy visits with the grandkids, walking along the riverfront, Netflix binges, and all things Springsteen.
Lateef McLeod
Lateef McLeod, MFA (he/him), is a member of CommunicationFIRST’s Board of Directors and is a writer, scholar, performer, and PhD student in anthropology and social change at the California Institute for Integral Studies in San Francisco. His books of poetry include A Declaration of a Body of Love (2010) and Whispers of Krip Love, Shouts of Krip Revolution (2020). He co-hosts the podcast Black Disabled Men Talk with Leroy Moore, Keith Jones, and Ottis Smith. Mr. McLeod was formerly on the Board of Directors of the International Society for Augmentative and Alternative Communication. A full-time AAC user, he has consulted for assistive technology developers and providers on technical aspects of AAC. He has performed on stage with Sins Invalid, a disability justice-centered performance project. Mr. McLeod received a bachelor of arts in English from the University of California, Berkeley, and a master of fine arts in creative writing from Mills College. He is featured in the Anthem Award-winning See Us, Hear Us video series, and he lives in Oakland, California.
Editing for this post by Deirdre Galvin-McLaughlin