We believe CommunicationFIRST cannot be effective unless we are led and guided by the people whose interests and rights we seek to defend and advance. We work to ensure the majority of our leadership experiences a communication-related disability or health condition, or otherwise identifies as disabled. In addition, we strive to ensure that our community’s great diversity is reflected both on our Board and in our work. We seek improved leadership representation in the following areas: (a) disability type/health condition, including whether acquired at birth or later in life, (b) type of AAC supports used, (c) race and ethnicity, (d) gender and sexual identity or expression, (e) age, (f) geographic location, (g) professional experience and skills, and (h) life experience and perspective.
Please send ideas for diverse candidates for our governing Board and Advisory Council at any time to info@communicationfirst.org.
Board of Directors
- Jordyn Zimmerman (Chair)
- Pancho Ramirez (Vice Chair)
- Chris Williams (Treasurer)
- Gita Gupta (Secretary)
- India Ochs (Past-Chair)
- Susie Lotharius (Past-Treasurer)
- Melissa Crisp-Cooper (Director)
- Tim Jin (Director)
- Toby Latham (Director)
- Lateef McLeod (Director)
- Godfrey Nazareth (Director)
- Erin Sheldon (Director)
Advisory Council
- Grant Blasko
- Niko Boskovic
- Ben Breaux
- Samuel Capozzi
- Rachel Kripke-Ludwig
- DJ Savarese
- Lisa Vallado
- Angelica Vega
- Matthew Wangeman
- Alice Wong
- Alyssa Hillary Zisk
Staff
Emeritus Board and Council Members
- Jack Brandt
- Judy Heumann (z"l)
- Devva Kasnitz (z"l)
- Ido Kedar
- Clarissa Kripke
- Maria Ott
- Sue Swenson
Jordyn Zimmerman (Chair)
Jordyn Zimmerman, MEd (she/her), is the Chair of CommunicationFIRST’s Board of Directors. During the day, Ms. Zimmerman serves as the Program Strategy Manager at The Nora Project, which supports educators in their efforts to teach all students about disability as a valued and expected part of human diversity. She earned her master’s degree in Curriculum and Instruction at Boston College in 2021. Before graduate school, Ms. Zimmerman interned at the National Disability Rights Network and completed her bachelor’s degree in Education Policy at Ohio University, where she founded the seventh inclusive collegiate cheer team in the nation. As a nonspeaking autistic student who was denied access to effective augmentative communication until she was 18, Ms. Zimmerman has personal experience challenging the educational status quo, experience that is featured in the 2021 documentary This Is Not About Me. In 2022, Ms. Zimmerman was appointed to serve on President Biden’s Committee for People with Intellectual Disabilities. In April 2022, she was the only AAC user invited to provide remarks to the first US Interagency Autism Coordinating Committee meeting in years focused on the needs of nonspeaking autistic people. She is also featured in the Anthem Award-winning See Us, Hear Us video series, and was profiled by 19th News in April 2023, under the headline, “Jordyn Zimmerman is Redefining Communication as a Nonspeaking Advocate for Disability Rights.” More information can be found on her personal website which is www.JordynZimmerman.com and she can be followed on X/Twitter at @Jordynbzim. She communicates most effectively by typing.
Pancho Ramirez (Vice Chair)
Pancho Ramirez (he/him) was elected to the Board of Directors of CommunicationFIRST in 2021 and became Vice Chair in April 2023. As a Mexican immigrant farmworker, he acquired his speech disability in 2003 at age 20 from a brain stem stroke after a car accident, and has lived in hospitals and nursing homes in Northern California ever since. Mr. Ramirez has taught himself English, earned his GED and a web developer certificate from Santa Rosa Junior College, started learning French, and has become an instrumental member of a research team at the University of California, San Francisco, that is developing groundbreaking communication technology to produce words from thought. A one-minute video about this technology featuring Mr. Ramirez can be accessed here. He was profiled in the July 2021 New York Times article “Tapping Into the Brain to Help a Paralyzed Man Speak.” CommunicationFIRST hosted a webinar called “Brain to Text Technology?” in September 2022 featuring Mr. Ramirez and members of the research team he is part of. When not designing websites and participating in pioneering research, he visits his local community in his power wheelchair as much as possible. Mr. Ramirez currently communicates using facial expressions, gestures, a head mouse to type on a computer, a laser pointer to point at a laminated letterboard, and (most recently) a speech-generating device. His personal website is https://panchoderancho.com/.
Chris Williams (Treasurer)
Chris Williams (he/him), elected Treasurer of CommunicationFIRST in September 2023, is a disability advocate who founded the “Neurodiversity” and “Of Size” Employee Resource Groups (ERGs) at the financial services corporation Block, where he processed payments to workers in the form of stock. One public event he organized at Block was Autism: A Vision for a More Equitable Future (2019), a talk between NeuroTribes author Steve Silberman and John Marble. Chris has over 15 years of experience in the equity compensation industry and learned he was autistic at the age of 36, after his daughter Cassidy was diagnosed. The impact of the Neurodiversity ERG and stories about the Williams family are both featured in Eric Garcia’s book, We’re Not Broken: Changing the Autism Conversation. Chris communicates expressively through typing and speech, though environmental and social factors often dysregulate his communication patterns. He currently works as a Senior Stock Administrator for GitLab. Chris and his family recently moved to Maryland from the Bay Area of California and are excited to build a network of community and support.
Gita Gupta (Secretary)
Gita Gupta, MS, MSE (she/her), is the Secretary of CommunicationFIRST and is a disability advocate, community organizer, researcher, and Executive Director of the Anurag and Gita Gupta Foundation. She spent over 20 years in Silicon Valley in senior executive roles focused on market strategy and marketing execution in both startups and global Fortune 100 companies, including SAP and Oracle. For the past decade, she has managed a several-thousand-member global online forum to help raise awareness and disseminate pioneering medical research to help families find answers to complex medical symptoms. Ms. Gupta has a special interest in scientific developments surrounding the pathophysiology of autism, and collaborates with researchers in the fields of neurology, mitochondrial disorders, metabolic medicine, immunology, and the microbiome. Ms. Gupta received a Bachelor of Engineering (Computer Science) degree from Anna University in Chennai, India, Master of Science (Computer Science) from Rutgers University, and Master of Science in Engineering (Information Systems Management) from Purdue University. She lives in the San Francisco Bay area, and communicates most effectively with speech.
India Ochs (Past-Chair)
Born with a speech-related communication disability, India Ochs, JD, MPA (she/her), is Past-Chair of CommunicationFIRST, and has been a social justice advocate her entire life. Currently a US government attorney, she previously worked on juvenile detention reform at the Pretrial Justice Institute and served as Legal Officer at the Robert F. Kennedy Memorial Center for Human Rights, coordinating human rights initiatives in 24 countries. She also established and ran a nonprofit at AmeriCorps VISTA to unite youth with and without sensory disabilities through sports and service-learning activities. Since 2006, she has variously served the augmentative and alternative communication (AAC) community as President and Director of the US Society for Augmentative and Alternative Communication (USSAAC), Vice President of the International Society for Augmentative and Alternative Communication (ISAAC), and member and/or chair of ISAAC’s Bylaws, Family Engagement, and AAC Awareness Committees. Her other volunteer activities have included representing children in foster care as a guardian ad litem, serving as a US Coast Guard Auxiliary Flotilla Commander, and leading the parent-teacher association at her son’s school. Ms. Ochs earned her law degree from Syracuse University, where she was elected president of her class, taught a “street law” course in a local high school, and assisted with the Pan-Am 103 bombing trial from 2000-2002. She graduated from the University of North Carolina at Greensboro with a BA in Political Science and an MPA with a certificate in Nonprofit Management. In December 2021, she shared her experience in a CommunicationFIRST webinar about Running for Office with a Speech Disability. She resides in Maryland with her son, and communicates expressively using handwriting, typing, or with speech, depending on the context and familiarity of her conversation partners.
Susie Lotharius (Past-Treasurer)
Susie Lotharius, MEd (she/her), is Past-Treasurer of CommunicationFIRST and a disability advocate, community organizer, and educator. Over the past ten years, she has created and fostered several large communities to help support and mentor people with communication disabilities and their families. For nearly a decade, Ms. Lotharius taught reading and English language acquisition in US public elementary and middle schools. After college, she served as a full-time juvenile probation officer in Illinois. Before that, she spent two years teaching in rural Namibia. Ms. Lotharius received a BS degree in Foreign Service with a certificate in African Studies from Georgetown University, and a Master of Education degree with a certificate in K-12 English as a Second Language from George Washington University. She resides near Atlanta with her family and communicates most effectively using speech.
Melissa Crisp-Cooper (Director)
Melissa Crisp-Cooper (she/her) is member of the Board of Directors of CommunicationFIRST and is a freelance writer and disability-focused health care advocate. As the Associate Director of Participant Experience at The Arc San Francisco, Ms. Crisp-Cooper helps participants use their voice to advocate and tell their stories. Her moderate athetoid cerebral palsy affects her coordination and speech, and she navigates the world in a purple power wheelchair. Ms. Crisp-Cooper grew up and was mainstreamed in public schools in Southern California. She was lucky to have had a very good speech therapist who advocated on her behalf, and parents who had high expectations and instilled in her a strong ability to adapt and solve problems that has served her well. Ms. Crisp-Cooper has served on California’s State Council on Developmental Disabilities and helped to interview hundreds of Regional Center consumers near Sacramento as a Consumer Visitor with the Life Quality Assessment Project. She received a BA in Human Development from the University of California at Riverside. She loves travel, yoga, and spending time with family, friends, and her cats. Ms. Crisp-Cooper resides in Northern California with her husband, and communicates expressively by typing with word-prediction software and speaking with the assistance of a revoicer. She has yet to find a dedicated AAC device that accommodates her thinking speed and snarky sense of humor.
Tim Jin (Director)
Tim Jin (he/him) is a member of CommunicationFIRST’s Board of Directors. Born with cerebral palsy, he is passionate about expanding communication access for all, having used an augmentative and alternative communication (AAC) device since elementary school in the 1980s. Mr. Jin serves on multiple boards, government task forces, and committees, and frequently speaks at conferences and training seminars. He is a strong proponent of self-direction, recognizing its crucial role in empowering individuals with disabilities to have greater control over their lives. To advocate for these principles state-wide, Mr. Jin is employed as Community Program Specialist II at California’s Department of Developmental Disabilities. His work has been featured by both TEDx and ABILITY Magazine (video). In September 2021, Mr. Jin testified by video for a US Senate Judiciary Subcommittee hearing on guardianship reform. Mr. Jin graduated from California State University in Long Beach with a degree in speech communication. He lives in the Los Angeles area.
Toby Latham (Director)
Toby Latham (he/him) was elected to CommunicationFIRST’s Board of Directors in August 2024. After more than a decade of service as a lawyer with the National Labor Relations Board, Mr. Latham left the federal government in 2024 to practice employment law and disability rights advocacy. Mr. Latham is active in his community advocating for and with people with disabilities, especially students in public schools. He served for several years on the Fairfax County School Board’s Advisory Committee for Students with Disabilities, and was a founding member of the Fairfax County Special Education Parent Teacher Association. Mr. Latham’s current volunteer advocacy includes leading efforts to establish state and local minimum standards for public schools regarding training and support for teachers and staff who support students who use augmentative and alternative communication (AAC). Mr. Latham is also a veteran, having served in the U.S. Army for eight years, including deploying to Kuwait and Iraq in support of Operation Iraqi Freedom. Toby received his Juris Doctor, with a concentration in labor and employment law, from the Maurice A. Deane School of Law at Hofstra University. He grew up in Norfolk, Virginia, and earned his Bachelor of Science in Business Administration from Old Dominion University. He identifies as neurodivergent and has two children, including one who relies on AAC. His most effective means of expressive communication is either speech or typing, depending on the context.
Lateef McLeod (Director)
Lateef McLeod, PhD, MFA (he/him), is a member of CommunicationFIRST’s Board of Directors and is a writer, poet, performer, and scholar in anthropology and social change. He was awarded a PhD from the California Institute for Integral Studies in San Francisco in 2024 for his dissertation on peer supports among people who need and use augmentative and alternative communication (AAC). His books of poetry include A Declaration of a Body of Love (2010) and Whispers of Krip Love, Shouts of Krip Revolution (2020). He has co-hosted the podcast Black Disabled Men Talk with Leroy Moore, Keith Jones, and Ottis Smith. He has also performed on stage with Sins Invalid, a disability justice-centered performance project. Dr. McLeod received a bachelor of arts degree in English from the University of California, Berkeley, and a master of fine arts in creative writing from Mills College. He currently works as a Community Research Associate at OSHU University Center for Excellence in Developmental Disabilities (UCEDD). He is featured in the Anthem Award-winning See Us, Hear Us video series, and he lives in Oakland, California.
Godfrey Nazareth (Director)
Godfrey Nazareth, MS (he/his), was elected to the Board of Directors of CommunicationFIRST in August 2024. He is a Pennsylvania-based entrepreneur, biomedical engineer, research scientist, keynote speaker, and full-time user of augmentative and alternative communication (AAC) tools and supports. Mr. Nazareth is co-founder of X-Biomedical, Inc., a medtech spinoff from the Children’s Hospital of Philadelphia. Mr. Nazareth has made significant innovative contributions to various industries including healthcare, medtech, assistive technology, aerospace, avionics, pharmaceuticals, and foods, having collaborated with the US Air Force, US Space Force, American Heart Association, and the University of Pennsylvania, among others. Mr. Nazareth has been battling motor neuron disease (ALS) since 2004, and he has designed and built a variety of custom assistive devices to help him communicate, function, operate, and interact as efficiently as possible. He was born in India, has Portuguese and Indian heritage, and is a Roman Catholic. His master’s degree is in biomedical engineering from Drexel University. He has a teenage daughter. He lives outside Philadelphia, and serves on the Pennsylvania State Assistive Technology Advisory Committee. Mr. Godfrey communicates expressively with the self-designed and -built AAC speech generating device strapped to his left forearm. You can learn more about his interesting life in this 2021 Superhumans podcast.
Erin Sheldon (Director)
Erin Sheldon, MEd (she/her), is a member of CommunicationFIRST’s Board of Directors and is a thought leader, writer, speaker, and consultant in the areas of assistive technology, literacy, and school inclusion. Professionally, she serves part-time as the CEO of Integration Action for Inclusion, Ontario’s nonprofit association for school inclusion, and as a part-time consultant for a company that makes AAC software. As an independent consultant, Ms. Sheldon gives professional development workshops and webinars on communication and literacy supports for students with significant disabilities for audiences of educators, speech therapists, and parents. In addition to speaking regularly at major professional conferences in the field, including Closing the Gap, ATIA, and ISAAC, she has written journal articles, book chapters, and manuals for educators. She also developed several dozen free webinars on AAC and literacy instruction for students with significant disabilities for the Angelman Syndrome Foundation’s Communication Training Series. Ms. Sheldon entered the field after her first child was diagnosed with deletion-positive Angelman Syndrome and autism. Previously, she was a negotiator and organizer for labor unions. In her free time, she manages several popular Facebook groups for communities of professionals and families who support individuals requiring expressive communication supports. Ms. Sheldon received an MEd degree in special education from Queen’s University in Ontario, an undergraduate degree in Labor Studies from Western Washington University, and is a graduate of the Partners in Policymaking program. Ms. Sheldon lives in Ontario, Canada, with her family. She communicates expressively by speaking and typing.
Grant Blasko (Advisory Council)
Grant Blasko (he/him) is a young adult nonspeaking autistic student who communicates using augmentative and alternative communication (AAC). He lives in Mercer Island, Washington, where he currently attends Bellevue College. He is also a University of Washington DO-IT Scholar, an active member of TASH’s National Communication Access Workgroup, and an Advisory Council member of the civil rights organization CommunicationFIRST. Since the age of 11, Grant has been advocating for himself and other non-speaking autistics at schools, conferences, and universities throughout the United States. He is passionate about curriculum accessibility, Universal Design for Learning (UDL), and inclusive practices. He has served as a stakeholder on panels guiding autism professionals at the American Occupational Therapy Association, CAST, and the International Society for Autism Research (INSAR). Currently, he is co-designing a course for classroom support considerations for AAC users at New York University’s Program for Inclusion and Neurodiversity Education (PINE). In 2021, Grant completed the Autistic Self Advocacy Network’s Autistic Campus Inclusion Leadership Academy. He was featured in the short, award-winning film LISTEN and his essay was published in the book Leaders Around Me (2019). Grant shares a unique and compelling perspective as a non-speaker with autism and is motivated by the opportunity to stand up for the systemic change needed to improve the lives and educational access of disabled individuals, especially those impacted by autism and communication challenges. His personal website is www.grantblasko.com. For Autism Acceptance Month in 2022, he wrote a guest blog about the need to recognize and accept communication stress. He also shared his reflections on the 2022 Interagency Autism Coordinating Committee meeting. He communicates expressively by typing.
Niko Boskovic (Advisory Council)
Niko Boskovic (he/him) is a nonspeaking autistic man living in Portland, Oregon. He graduated high school in 2019 with a regular diploma, and is pursuing his Associates degree at Portland Community College. Since gaining access to augmentative and alternative communication (AAC) at age 11, he has dedicated himself to writing about life as a nonspeaking autistic, and finds that he is best able to express his lived experience through poetry. Niko is a columnist for Spectrum Life Magazine, and wrote a monthly blog for four years for the Oregon Council on Developmental Disabilities. He regularly presents at conferences and virtual events. Niko’s poetry has been published in Montana Mouthful (2020); Lunch Ticket’s Amuse-Bouche: Spotlight (2019); In Parentheses Magazine (Fall 2020); The Pointed Circle (2021); MediaRites’ The -ISM Youth Files (2022); and Kind Writers Literary Magazine (August 2022).
Ben Breaux (Advisory Council)
Rachel Kripke-Ludwig (Advisory Council)
Rachel Kripke-Ludwig (she/her) is a nonspeaking autistic advocate and college student. She is a Community Partner in the AASPIRE Community Based Participatory Research Group. She is working on a five-year study to develop tools to measure outcomes for adult autism services and is developing a suicide prevention project for autistic adults. Rachel leads The Other Option, a workshop and program for AAC users with high support needs who want to direct their services. The program models how to run a successful group of self-advocates who require Communication Regulation Support. She is on the organizing committee for the Stanford Neurodiversity Summit, and is a frequent speaker on neurodiversity and the rights of nonspeaking autistics. To learn more about Rachel, please visit Rachel Tells It All.
DJ Savarese (Advisory Council)
David James “DJ” Savarese (he/him) works to disrupt ableism as an artful activist, public speaker and scholar, multi-genre writer, teacher and practicing optimist. Co-Chair of The Alliance for Citizen Directed Supports, he designed and directs the Lives-in-Progress Collective, a national, grassroots project focused on expanding and transforming self-direction. A 2022-2023 Iowa Arts Fellow and Zoeglossia Fellow, he is the author of Swoon, whose title poem is nominated for a Pushcart Prize. DJ has also published Studies in Brotherly Love, a co-authored chapbook based on the artwork of minimally speaking autist Malcolm Corley, and A Doorknob for the Eye, a poetic series focused on the artwork of seven autistics. Co-producer, narrative commentator, and subject of the Peabody Award-winning, Emmy-nominated documentary film Deej: Inclusion Shouldn’t Be a Lottery (2017), he teaches inclusive, multigenerational, global poetry writing classes through Listen2Us, and poetry writing courses for alternatively communicating autistics through the LYNX Project in Chicago. An advocate for the communication and literacy-based educational rights of all students, he founded Listen2Us: Writing Our Own Futures as an Open Society Foundations Human Rights Initiative Community Youth Fellow. A Pushcart Prize nominee and a notable essay in Best American Essays (2018), his lyric essay “Passive Plants” in The Iowa Review disrupts the cultural assumptions underlying communication and movement biases. A public scholar, he teaches and presents nationally on a range of topics, including a National Endowment for the Humanities-sponsored talk on “Disrupting Ableism Through Artful Activism.” His published scholarship includes an article on multimodal communication in Logic magazine, “Disrupting the Garden Wall” (2021); the co-authored essay “Enmeshing Selves, Words and Media, or Two Life Writers in One Family Talk about Art and Disability” (2021); an essay in Autism in Adulthood on his embodied experience, “Coming to My Senses” (2019); and “Unearthing the Concepts That Bury Us,” a chapter forthcoming in the scholarly anthology Disability in Dialogue. One of only two AAC-using American autistics to be fully included from kindergarten through college graduation, he has been actively disrupting the status quo since he was five years old. Before moving to Iowa City, DJ graduated with a double major in Anthropology and Creative Writing from Oberlin College in 2017.
Angelica Vega (Advisory Council)
Angelica Vega (she/her/hers) is a May 2020 graduate of American University in Washington, DC, where she earned both department and Latin honors in Philosophy. Angelica is a passionate advocate, and served as a 2021-2022 Law Fellow of The Coelho Center for Disability Law, Policy and Innovation at Loyola Law School. She has continued her work with The Coelho Center as Chair of its Advisory Committee on Diversity, Equity, Inclusion, and Access, a committee that she proposed and co-created. In 2018, she was a Lime Connect Fellow, a leadership training program for college students with disabilities. Angelica has interned on Capitol Hill for Representative Frank Pallone, Jr. (NJ-06), and for The Arc of the United States. In 2022, she, along with other prominent disability activists, met with the White House Gender Policy Council and the White House Office of Public Engagement to discuss reproductive health care in the disability community. Angelica has written several guest blogs for CommunicationFIRST, including “When Professors Are Welcoming: Disability Inclusion in the Classroom,” and “This Black History Month, It’s Time for Disability Justice,” and “Communication Disabilities and the 2020 Presidential Debates.” As an Afro-Latina with multiple disabilities, including a speech disability and PCOS (Polycystic Ovary Syndrome), her long-term goal is to advocate for people with communication disabilities to be included in all aspects of society. She also aspires to run for public office, as she described during CommunicationFIRST’s December 2021 webinar, “Running for Office with a Speech Disability,” which she co-moderated. Angelica lives in New Jersey and currently works at JPMorgan Chase & Co. as a Data Management Associate.
Alice Wong (Advisory Council)
Alice Wong (she/her) is a disabled activist, writer, media maker, and consultant. She is a relatively new AAC user and nonspeaking person. Alice founded and directed the Disability Visibility Project, an online community dedicated to creating, sharing, and amplifying disability media and culture. Alice is the editor of Disability Visibility: First-Person Stories from the Twenty-First Century, an anthology of essays by disabled people and Disability Visibility: 17 First-Person Stories for Today, an adapted version for young adults. Her debut memoir, Year of the Tiger: An Activist’s Life, is available from Vintage Books, and Disability Intimacy, her latest anthology, was published in 2024. Alice resides in the San Francisco Bay area, and was named a MacArthur Fellow in 2024. Upon acceptance of the prestigious award, Alice reminded us that, “Everyone has a voice and collectively we can move mountains.” Twitter/X: @SFdirewolf.
Alyssa Hillary Zisk (Advisory Council)
Alyssa Hillary Zisk, PhD (they/them), is a member of CommunicationFIRST’s Advisory Council and a consultant for the AAC Counts Project. They are an Autistic part-time AAC user. Alyssa does AAC research, some of which is related to their own AAC use and needs and some of which is not. They completed their PhD in Interdisciplinary Neuroscience in May 2021 at the University of Rhode Island, working on brain-computer interfaces for people with ALS. Their undergraduate degrees were in Chinese, Mechanical Engineering, and Mathematics, and they have a master’s degree in Mathematics. Alyssa is the AAC Research Team Lead for a company that makes AAC software and one of the moderators of the popular Facebook group, Ask Me, I’m an AAC User. They also teach neuroscience at the University of Rhode Island and mathematics for The Art of Problem Solving.
Tauna Szymanski (Executive Director & Legal Director)
Tauna Szymanski, JD, MPA (she/her), is the Executive Director and Legal Director of CommunicationFIRST, the only civil rights organization led by and for and dedicated to protecting and advancing the rights and interests of the estimated 5 million people in the United States who cannot rely on speech alone to be heard and understood. Before joining CommunicationFIRST in 2019, she spent more than a decade practicing international climate change and renewable energy law. Ms. Szymanski received her JD from Stanford Law School, and an MPA in economics and public policy and MA in Urban Planning from Princeton University’s School of Public and International Affairs. She studied international relations and environmental policy as an undergraduate at Carleton College. She is licensed to practice law in New York and Washington, DC, and serves on the Boards of Directors of the Disability Rights Education and Defense Fund (DREDF) and the Disability Rights Bar Association (DRBA). Ms. Szymanski grew up mostly outside the United States, is neurodivergent and multiply disabled, and expresses herself most effectively by typing, though is usually able to communicate using speech.
Bob Williams (Senior Advisor)
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.
Bre Mercier (Communications Director)
Bre Mercier (she/her) is CommunicationFIRST’s first Communications Director. She grew up in Lawrence, Massachusetts, a self-declared “Immigrant City.” Lawrence helped develop Bre’s passion for advancing Diversity, Equity, Inclusion, and Accessibility (DEIA). Her focus on these issues grew in three sanctuary cities where she tutored refugees, supported migrants, and raised awareness about the migrant experience through her writing. Bre previously worked at the tourism office in Cambridge, Massachusetts, where she assisted the office in integrating DEIA principles into its marketing and outreach. At Syracuse University’s S.I. Newhouse School of Public Communications, Bre earned a B.S. in Public Relations. She has won departmental and national awards for her writing on the intersection of advertising, society, and music. In her first job, Bre was responsible for marketing musical acts signed to major music labels. Early in her career, she also managed and collaborated on lyrics for a Boston-based rock group. She now lives in central Massachusetts. There you can find her taking yoga classes, enjoying nature with her husband, and introducing music and movement to her daughter. Bre is a neurodivergent person with ADHD and anxiety, and she expresses herself through writing and speech. She frequently supports her cousin who has aphasia. Bre feels absurdly fortunate to be learning from incredible colleagues in the disability rights community.
Marrok Sedgwick (Program Manager)
Marrok Sedgwick, PhD, MFA (he/they), is a Program Manager at CommunicationFIRST. Dr. Sedgwick completed his PhD in Learning Sciences, the science of human learning, in May 2024, at the University of Illinois at Chicago. He studied how autistic AAC users, especially those with intellectual disabilities, learn. He focused on the ways that new media tools, stimming, and pursuit of interests collectively become epistemic practices when students are given the freedom to determine what to do and when. Epistemic practices are things people do to try to understand the world. For example, a biologist might use a microscope to study bacteria. A chemist might heat up an unknown liquid to see how it responds. These are epistemic practices, or approaches to understanding something about the world. Dr. Sedgwick’s research showed that autistic AAC users use stimming, photography, AAC, and pursuit of interests to understand the world. He also developed a participatory design study that was published in Disability Studies Quarterly, and emphasized the ways that curriculum designers’ assumptions about what AAC-using students might do in the future are interwoven in their processes of design. Dr. Sedgwick is also an award-winning documentary filmmaker whose films have screened internationally at festivals and won multiple awards, including Best Short at the 2020 Society for Visual Anthropology Film Festival for People Like Me, and the PK Walker Innovation Award at the 2018 Superfest International Disability Film Festival for Stim. His MFA in Social Documentation is from the University of California, Santa Cruz, and his undergraduate degree in Decision Science is from Carnegie Mellon University. Whether he’s practicing science or art, Dr. Sedgwick’s goal is always to nudge society in a more inclusive, more equitable direction, especially for people who need AAC. Dr. Sedgwick is a queer, trans, and multiply-disabled autistic person who became a full-time AAC user as an adult after acquiring an additional neurological disability. Dr. Sedgwick remains engaged in animal welfare and LGBT+ volunteering and activism in addition to his professional focus on supporting the rights and self-determination of AAC users. He looks forward to someday having his own horse to dote on.
Jen Schonger (Operations Manager)
Jen Schonger (she/her), is CommuncationFIRST’s Operations Manager. Jen previously served as the Program Manager at New Jersey's Autism Center of Excellence under Dr. Elizabeth Torres, based at Rutgers University. In this capacity, she organized well-attended national webinars bringing together scientists, community members, and practitioners to try to shift ableist research, practices, and beliefs within the autism community and beyond. Earlier in her career, she worked at the country's largest human relations management and payroll processor, and later as payroll administrator for a global macro hedge fund. Jen earned a Bachelor’s Degree in Business Management from Fairleigh Dickinson University, and continues to educate herself on the topics of Neurobiological Perspectives in Autism, as well as Diversity, Equity and Inclusion (DEI). Inspired by her AAC-using daughter, she has spent the last decade working to dismantle ableist systems, and to fight for disability rights and communication access. She feels very lucky to have been able to meet, work, and learn alongside numerous disabled friends and colleagues in the disability rights community. Jen’s disabilities include migraine disease and ADHD. She is married to her high school sweetheart and has two neurodivergent children, one of whom is a multi-modal AAC user. She is also raising four adorable dachshunds. Jen communicates best through speech, though she also enjoys communicating with memes and gifs whenever possible.
Ren Koloni (Program Associate)
Ren Koloni, MA (they/them), is a disability justice worker and Program Associate at CommunicationFIRST. As a multiply-disabled and chronically ill autistic person, they’ve been doing justice work from the sickbed for over a decade, beginning with their work as a community moderator for a transgender youth support blog in high school. They earned a bachelor’s degree in Sociology and Gender Studies from the University of Mary Washington and a master’s in English from George Washington University, where they focused on disability and racial justice. Ren’s background in linguistics, pedagogy, and trauma studies, combined with their passion for disability justice, drives their interest in communication access, including plain language and AAC. This is articulated in one of their articles, “Can Being Denied Augmentative and Alternative Communication (AAC) Cause Lifelong Trauma?” Ren is semi-speaking, conversational in Irish Gaelic, and they communicate most effectively by typing.