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 therefore have worked 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 your ideas for diverse candidates for our governing Board and soon-to-be-formed Advisory Board at any time to firstname.lastname@example.org.
India Ochs (Chair)
Born with a speech-related communication disability, India Ochs, JD, MPA, 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 staff officer, 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. 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.
Clarissa Kripke (Vice Chair)
Clarissa Kripke, MD, FAAFP, is Clinical Professor of Family and Community Medicine at the University of California San Francisco (UCSF). Dr. Kripke also leads the Office of Developmental Primary Care, which is dedicated to building the health care system’s capacity to serve adolescents and adults with developmental disabilities. She also founded and directs CART Services, a mobile health care consultation team serving adults with developmental and intellectual disabilities in Northern California who are transitioning from institutions to the community or are at risk of losing community placements. She regularly provides in-home primary care to medically fragile and behaviorally complex adolescent and adult patients. For over a decade, Dr. Kripke served as Associate Editor of American Family Physician, the peer-reviewed journal of the American Academy of Family Physicians, where she helped introduce the journal’s evidence rating system for clinical review articles and the Cochrane for Clinicians program to encourage deployment of the highest-quality evidence into clinical practice. Dr. Kripke serves on the founding editorial board of the journal Autism in Adulthood, and is a long-time member of the American Association for Intellectual and Developmental Disabilities (AAIDD), the Society of Teachers of Family Medicine, the American Academy of Developmental Medicine and Dentistry, and the National Association for the Dually Diagnosed. She writes frequently on the topic of access to health care for people with developmental disabilities, and served on the US Interagency Autism Coordinating Committee Working Group on Improving Health Outcomes for Individuals on the Autism Spectrum. Dr. Kripke earned her undergraduate degree from Harvard University and her medical degree from Temple University. She resides in San Francisco with her family. Her preferred forms of expressive communication are typing and speech, in that order.
Susie Lotharius (Treasurer)
Susie Lotharius, MEd, is 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. She also 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 her preferred form of expressive communication is speech.
Allison Thurman (Secretary)
Allison Thurman, MBA, is a federal contractor with a service-disabled, veteran-owned business and a volunteer advocate for children and adults with significant disability-related support needs. In 2015, she co-founded a citizen-led task force to help transform Virginia’s prevailing outdated educational model of segregating students with significant disabilities into a more evidence-based and social justice-oriented inclusive paradigm. Ms. Thurman has served as the School Board-appointed chair of her local school system’s Special Education Advisory Committee, as an active member of the Arc of Virginia’s Education Committee, and as a volunteer organizer of statewide and local disability and special education-related conferences. She spent over a decade at Deloitte Consulting, and five years at nonprofits supporting organ donation and placement. Ms. Thurman is a certified Project Management Professional, earned an MBA in Technology Management from the University of Phoenix, and graduated from James Madison University with a BA in International Studies. She is a COPAA-trained special education advocate, and is a proud member of the 2011 Virginia Partners in Policymaking class. Ms. Thurman’s preferred forms of expressive communication are speech and text.
Melissa Crisp-Cooper (Director)
Melissa Crisp-Cooper is a freelance writer and disability-focused health care advocate. 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 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 currently serves as Chair of the WITH Foundation’s Self Advocate Advisory Committee. Ms. Crisp-Cooper 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.
Gita Gupta (Director)
Gita Gupta, MS, MSE, 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 her preferred form of expressive communication is speech.
Judy Heumann (Director)
Judy Heumann, MPH, is a founder and leader of the international disability rights movement. At age 5, she was deemed a fire hazard and denied the right to attend kindergarten due to her mobility-related disability. Ms. Heumann, who survived polio at age 2, later had to challenge the discriminatory denial of her teaching license to become the first person in a wheelchair to teach in New York City public schools. Her early career included stints at the US Senate Committee on Labor and Public Welfare and Berkeley’s Center for Independent Living. To protest delays in federal disability rights regulations in the 1970s, Ms. Heumann famously organized sit-ins at US Department of Health, Education and Welfare (HEW) offices around the country, including one in San Francisco that lasted 28 days, an action memorialized in a 2018 episode of Comedy Central’s Drunk History. Her other accomplishments include helping to achieve passage of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act of 1994 and its predecessors, the Americans with Disabilities Act of 1990, and the United Nations Convention on the Rights of People with Disabilities. She has served as Assistant Secretary for Special Education and Rehabilitation Services at the US Department of Education, Director of the District of Columbia’s Department of Disability Services, the World Bank’s first advisor on disability and development issues, and the US State Department’s first Special Advisor on International Disability Rights. Ms. Heumann co-founded Disabled in Action and the World Institute on Disability, and is a senior fellow at the Ford Foundation, where she works to advance the inclusion of people with disabilities in the media. She is the host of the weekly disability rights-focused show The Heumann Perspective. Her 2018 TED Talk, “Our fight for disability rights — and why we’re not done yet,” has been viewed more than 1.1 million times. A 2016 interview with Ms. Heumann conducted by high school-aged AAC user Samuel Habib can be viewed here. Her memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, will be released in early 2020. She received her undergraduate education degree from Long Island University and her Master in Public Health degree from the University of California, Berkeley. A Brooklyn native, Ms. Heumann resides in Washington, DC, with her husband Jorge Piñeda. Her preferred form of expressive communication is speech.
Ido Kedar (Director)
Ido Kedar is a nonspeaking autistic writer and activist based in Los Angeles. He is the author of the highly acclaimed Ido in Autismland: Climbing Out of Autism’s Silent Prison (2012), a memoir written during his early teenage years. Ido in Autismland has helped thousands of people understand that, contrary to prominent theories, in many instances nonspeaking autism is a motor rather than a cognitive disability. His acclaimed second book, In Two Worlds (2018), a novel, tells the story of a profoundly misunderstood autistic boy trapped within his own body and unable to communicate until he is finally and powerfully liberated through letters. Mr. Kedar graduated from his local high school, the first nonspeaking autistic person in his school district to do so (with a 3.9 GPA), and is enrolled in college part-time while continue to pursue a career in writing and advocacy. His writing, speeches, and profiles about him have been featured in The Wall Street Journal, the Los Angeles Times, NBC, the Canadian Broadcasting Corporation, and the 2019 United Nations World Autism Day Program. Mr. Kedar blogs at http://idoinautismland.com. His preferred form of expressive communication involves typing on an iPad with voice output, or on a Bluetooth keyboard attached to the iPad. He also communicates effectively by pointing to letters on a low-tech laminated alphabet board.
Erin Sheldon (Director)
Erin Sheldon, MEd, 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 AssistiveWare. 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. Her preferred forms of expressive communication are speaking and typing.
Sue Swenson (Director)
Sue Swenson, MBA, is the president of Inclusion International, the United Nations-recognized organization for children and adults with intellectual disabilities and their families. Previously, Ms. Swenson served as Deputy Assistant Secretary for Special Education and Rehabilitative Services at the US Department of Education, overseeing 200 employees and $15 billion in funding. Ms. Swenson learned about disability from her nonspeaking son Charlie, who lived for 30 years with disabilities that had a profound effect on the whole family. She is a graduate of Partners in Policymaking, was a Kennedy Fellow in the United States Senate, served as Executive Director of both the Kennedy Foundation and The Arc of the United States, and was Commissioner for Developmental Disabilities during the Clinton administration. Ms. Swenson was educated at the University of Chicago (AB, AM) and holds an MBA from the University of Minnesota. A native of Minnesota, she currently resides in the Washington, DC, area. She communicates most effectively by speaking.
Tauna Szymanski (Executive Director & Legal Director)
After a 20-year career in environmental policy and law, Tauna Szymanski, JD, MPA, was appointed the founding Executive Director of Communication First in April 2019. For more than a decade at a multinational law firm in London and Washington, DC, Ms. Szymanski represented clients in high-profile cases before federal and state appellate courts, in federal regulatory proceedings, and in environmental commodity transactions. While in private practice, her pro bono and volunteer work focused on disability rights and inclusive education. She represented the National Disability Rights Network as amicus curiae in the US Supreme Court case of Fry v. Napoleon Community Schools, 137 S. Ct. 743 (2017), which unanimously upheld the rights of students with disabilities to seek justice under the Americans with Disabilities Act and other civil rights laws. Ms. Szymanski has been recognized as a leading lawyer by Chambers Global, Chambers USA, Who’s Who Legal: Environment, and Law360. She received her JD from Stanford Law School, MPA and MA in Urban Planning from Princeton University’s Woodrow Wilson Center for Public and International Affairs, and BA from Carleton College. She is licensed to practice law in New York and Washington, DC. Ms. Szymanski grew up in Asia, has multiple disabilities, and expresses herself most effectively by typing, though is able to communicate using speech.
Bob Williams (Senior Strategic Advisor)
Bob Williams joined Communication First as Senior Strategic Advisor in June 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.