Everything You Know About Disability Is Wrong

Dylan M. Rafaty, President and CEO of the North Texas Disability Chamber, joins Lily Newton and Erin Hawley to talk about disability acceptance and advocacy. With clarity and conviction, Dylan outlines why disability should never be treated as an act of charity. Instead, he frames it as a strategic investment that drives innovation, empowers communities and strengthens organizations from within.Dylan reflects on his personal experience navigating the world as someone who is deaf and hard of hearing.. He explains that advocacy is often misunderstood as self-promotion, when in reality it is rooted in service to the broader disability community. His message is clear: individual success stories matter, but collective action is where lasting change begins. Through storytelling, policy engagement and local civic work, Dylan models what authentic opportunity can look like in practice.This episode is a deeper understanding of how to move beyond performative allyship and into meaningful participation for all policymakers, business leaders or members of the public.Key Moments05:47 “Disability is not a charity”: why it must be built into planning from the start08:16 The business case for investing in accessibility and representation12:38 Understanding the emotional labor behind self-advocacy23:07 Why access means freedom of choice28:58 Policy and personal experience: how one drives the otherConnect with Dylan M. RafatyWebsite: northtexasdisabilitychamber.com LinkedIn: https://www.linkedin.com/in/dylanrafatyInstagram: https://www.instagram.com/dylan_rafaty Dylan M. Rafaty website:https://dylanrafaty.com/ Podcast: Let’s Work InclusivelyListen on Spotify

Amanda Steijlen is a therapist, lifestyle creator, and founder of Wheelie Big Dreams, a nonprofit that helps people with disabilities pursue their goals. She also leads True Bloom Therapy, supporting clients through life transitions with strategies that are both practical and grounded.In this episode, Amanda shares her path to mental health work, the ways we misunderstand independence, and how caregiving can be reciprocal. She speaks candidly about online self-image, burnout, and the importance of showing up as your real self especially when people expect you to hide what you’re going through.Amanda also reflects on Disability Pride Month and how it intersects with mental health, personal growth, and finding purpose. Whether she's guiding clients through the five core human needs or cultivating supportive friendships, Amanda emphasizes the power of real connection and redefining what success looks like.Key Moments02:46 Redefining independence and interdependence10:48 Becoming a therapist after anxiety and loss16:18 Balancing Disability Pride with grief25:39 Managing self-image as a content creator33:00 Finding community with other disabled creators41:36 Rethinking mental health care in schools47:43 Know the facts: 1 in 4 people are disabledConnect with Amanda SteijlenInstagram: @amandasteijlenWebsite: https://www.truebloomtherapy.comNonprofit: https://www.wheeliebigdreams.org

Courn Ahn is a designer, content creator, and advocate who cares deeply about accessibility and social justice. Their work focuses on helping people see disability, identity, and community support in a new way, especially through the lens of queerness, race, and being neurodivergent.As a Queer, nonbinary, mixed-race Korean creative, Courn shares from personal experience and speaks honestly about the challenges that come with being disabled in a world full of assumptions. Courn's journey has been about unlearning shame, accepting who they are, and understanding that using visible accommodations isn’t something to hide, it’s a powerful way to take care of yourself.Courn also talks about how people often assume you don’t need help if you look like you’re doing well, and how sharing online as a disabled person can be both meaningful and exhausting. Through their design work and presence on social media, Courn is not just creating content, Courn Ahn is also  creating space for real conversations, celebrating differences, and reminding us that accessibility should matter to everyoneKey Moments 00:00  What people get wrong about autistic people 06:43  Struggling with what to share online 14:18  Tools that make life easier 20:42  How style helps show who I am 27:01  Feeling free to be myself 33:13  How different parts of my identity connect 52:57  Finding confidence through disabilityConnect with Courn AhnLinkedin: https://www.linkedin.com/in/courtneyahndesign Website: https://www.courtneyahndesign.com/Instagram: https://www.instagram.com/candy.courn/

Jillian Curwin, Director of Communications for the Mascots Matter Campaign, is an advocate, storyteller, and content creator reshaping the conversation around disability, access, and representation. In this episode of Everything You Know About Disability Is Wrong, she joins hosts Lily Newton and Erin Hawley for an insightful discussion.Jillian shares her experience as a little person navigating an often inaccessible world, particularly in the fashion industry. She reflects on what sparked her advocacy, how misperceptions about disability motivated her, and why authentic representation matters. Jillian also talks about embracing a disabled identity, the value of lived experience, and the role of community in fostering self-acceptance and empowerment.Her story offers fresh perspectives on adaptive fashion, confidence, and finding one’s voice, both in the disability community and beyond. Listeners will gain valuable insights that challenge perceptions of disability and redefine what it means to be seen and heard.Key Moments06:01 Awakening to Advocacy07:11 Diverse Representation in Fashion19:02 My Disability Advocacy Journey23:44 Redefining Disability Through Experience34:37 Issues in Disability Fashion Inclusion45:00 Empowering Disability RepresentationConnect with Jillian CurwinLinkedIn: https://www.linkedin.com/in/jillian-curwin-04827056 Website: https://mascotsmatter.net/about-page/  

Kyla and Jedidiah Mora are a neurodivergent couple, writers, and advocates. They are the authors of “Today My Brain Is a Dinosaur,” a popular children’s book that helps kids understand autism, ADHD, and different ways of thinking.  Their journey started with their own diagnoses of autism and ADHD as adults. After years of confusion and challenges, they found clarity, self-acceptance, and a desire to help others feel less alone.  Kyla is a high school teacher and journalist who is passionate about education and storytelling. Jedidiah works in the water industry and has a strong interest in mechanical engineering. Together, they combine their skills and personal experiences to create stories that celebrate neurodivergent kids and families. Through their writing, they aim to break down stigma and spark conversations. Key Moments00:00 Intro and Audio Descriptions06:53 Own Voices, Own Stories Award for Disabled Authors12:33 Internalizing Blame; Autism, ADHD, and Trauma21:50 Autism and Learning to Be Your True Self26:49 Embracing Hyperfocus in a Positive Way28:21 Job Challenges and Personal Struggles44:44 Unique Traits of Autistic Girls59:09 Understanding and Accepting Connect with Kyla Mora Twitter: https://x.com/kylapmora Website: https://cherrylakepublishing.com/shop/show/54094 Jedidiah MoraWebsite: https://cherrylakepublishing.com/shop/show/54094 

Tiffany Yu is a disability advocate, entrepreneur, and author of The Anti-Ableist Manifesto. She started her career at Goldman Sachs before becoming a leader in disability inclusion.  After acquiring a disability as a child, she struggled with loneliness and self-doubt. Over time, she turned her experiences into advocacy and founded Diversability, a community that celebrates disability pride and fights stigma.  She works to break barriers, share personal stories, and create more inclusive spaces. Through her efforts, she shows that disability is diverse and that working together can create real change.Key Moments7:00 Overcoming Isolation and Disability14:13 Collective Advocacy in Action22:00 Disability Language Made Simple23:25 Safe Spaces 35:34 Beyond Assumptions: Tiffany’s Story49:16 Mental Health 01:02:22 Reaching Young ReadersConnect with Tiffany YuTwitter: https://x.com/imtiffanyyu Website:http://tiffanyyu.com/ The Anti-Ableist Manifesto: https://www.tiffanyyu.com/book 

Experiencing the world isn’t just about sight, it's about tasting, touching, hearing, and smelling, too. Using all our senses helps us connect more deeply to the world around us.Dr. Hoby Wedler is a chemist, entrepreneur, and advocate for inclusivity. He holds a Ph.D. in physical organic chemistry from UC Davis and founded the Wedland Group to explore how our senses shape emotions and connections. He creates unique food and drink experiences that help people appreciate the little things in life. He also works to break stereotypes about disability, inspiring others to reach their full potential.Dr. Wedler is also the founder and CEO of Hobie and Company (Hobie and Co online), part of Wedland Group. His company offers amazing blindfolded tasting experiences that help people explore their nonvisual senses. He shares his passion for sensory experiences on TikTok, where he has around 200,000 followers. Lastly, he runs Emotitec (emotitec.com), a company based in Italy.Key Moments09:14 Embracing Unseen Experiences  16:17 Empowerment Through Disability  19:19 Redefining Independence  28:24 Diversity Fuels Success  34:43 Supporting Blind Children  39:47 Parents Presuming Competence52:36 Sensory Experiences FounderConnect with Dr. Hoby WedlerLinkedIn: https://www.linkedin.com/in/hobywedler CEO at Wedland Group: https://wendland.efsadvisors.com/ President at EMOTITECH: https://emotitech.com/ 

"Just because you can’t see it, doesn’t mean it’s not real."Onyinye Udokporo, CEO and founder of Enrich Learning, dives into a conversation that’s both eye-opening and deeply personal, exploring the differences between UK and US disability cultures. From how each country approaches accessibility and support to the ways people talk about neurodivergence, it’s clear that culture shapes the disability experience in ways we don’t always realize.A big theme in this discussion is the power of language—how the words we use can either create understanding or reinforce barriers. Onyinye shares why being intentional with language isn’t just about being polite; it’s about making the world more inclusive and accessible for everyone. This conversation is a reminder that small shifts in how we speak and think about disability can make a huge difference.Key Moments00:37:03  Initial Rejection00:38:53 Mother’s Screening00:44:50  Shared Experience00:45:30 Cultural & Generational Factors10:15 Neurodivergence vs. Mental Health30:00 Empowering Language45:15 Authentic Conversations55:00 Cultural Pressures1:05:00 Dyslexia Advocacy1:30:00 Access Through Tutoring1:35:00 Reclaiming “Inspiring”Connect with Onyinye UdokporoLinkedIn: linkedin.com/in/onyinyeudokporoPersonal Website: onyinyeudokporo.comCompany Website: enrichlearning.co.uk

Richard Jacobs is a dedicated gamer and member of the esports team QuadGods. He discusses his journey of resilience, the pivotal role gaming plays in his life, and the misconceptions he faces as a disabled individual.Richard shares about the power of community and how his streaming “family” has allowed him to harness his competitive spirit and embrace his emotions. Key Moments13:32 - Inspiration and belonging.21:57 - Supports family through streaming.31:24 - Prefers controller over keyboard/mouse.43:23 - Handles losses calmly; focuses on perseverance.59:44 - Builds deep community connection.Connect with Richard JacobsInstagram: https://www.instagram.com/breadwinner1007/Website: https://quadgods.com/the-players

Humor can educate and challenge, but it must highlight issues without mocking the disability community. In this episode, we explore how satire can play into advocacy and ask, “What exactly makes good satire?”. Steven Verdile, Founder of Squeaky Wheel Media, shares his insights on the critical intersection of disability and content creation. Steven discusses the significance of focusing on specific issues, particularly those impacting the disabled community, and the protective measures taken to ensure writers' safety. Key Moments06:27 Humor exposes accessibility challenges.08:41 Accessible platforms empower disabled writers.23:11 Disability experiences and representation vary.38:13 Humor addresses disability policy.49:07 Steven’s school experience.Connect with Steven VerdileLinkedIn: https://www.linkedin.com/in/steven-verdile Website: https://thesqueakywheel.org/ Squeaky Wheel Instagram: https://www.instagram.com/thesqkywheel/?hl=en

Navigating a medical system that dismisses your pain ignites a fire to advocate for others who are overlooked.Annie Segarra is an activist and content creator dedicated to disability rights, body positivity, and social justice. Annie opens up about her deeply personal experience living with Ehlers-Danlos Syndrome (EDS), discussing the emotional and physical toll of navigating a medical system that often dismisses or misdiagnoses those with chronic illnesses. She shares her frustrations with being gaslit by medical professionals and the resilience it has taken to continue advocating for herself.Key Moments2:54Accessibility in spaces18:27 Living with EDS31:28 Experiencing medical gaslighting52:45 Advocating for inclusive training and supportConnect with  Annie SegarraLinkedIn:https://www.linkedin.com/in/anniesegarra Website:https://invisibleproject.org/annie-segarra/ 

Your co-hosts Lily Newton and Erin Hawley return with a candid "Just Between Us" segment on this episode of Everything You Know. They discuss the importance of authentic storytelling in media, using recent casting choices in "Wicked" and Disney adaptations as a jumping-off point. The hosts explore why representation isn’t enough without real inclusion and the need for self-accommodation to destigmatize accessibility. Lily and Erin also reflect on highlights from the past year, sharing their "All I Want" asks for better support.Key Moments00:00 Authentic casting matters03:44 Frustration with film clichés11:38 Tart cherry juice helps sleep14:20 Joining Easterseals' campaign17:14 Destigmatize accessibilityConnect with Lily NewtonLinkedIn: https://www.linkedin.com/in/lily-newton-3b0b5b229Website: https://www.easterseals.com/Connect with Erin HawleyLinkedIn: https://www.linkedin.com/in/erinhawley2Website: https://www.easterseals.com/

Advocacy is not just about raising awareness; it’s about creating real change.Madison Tevlin is an actor, Host, Model, and Advocate. She is known for her impactful work in the "Assume That I Can" campaign for World Down Syndrome Day and her role in "Champions" alongside Woody Harrelson. Madison shares her wonderful journey and passion for music and storytelling.Madison talks about her upcoming podcast, "21 Questions," featuring stars like Paris Hilton and Nelly Furtado. Madison opens up about the challenges of breaking stereotypes associated with Down syndrome and emphasizes the importance of community support in her life.Key Moments00:00 Multi-faceted journey06:24 Music and family enhance wellness17:53 Opening up about Down syndrome22:19 Perfect fit for the roles27:26 Redefining Stereotypes Through Storytelling45:25 Education integration fosters communityConnect with Madison TevlinInstagram:https://www.instagram.com/madisontevlin/?hl=en Website: https://www.madisontevlin.com/ 

Humor is a bridge to understanding; it transforms conversations about disability into moments of connection.Pamela Schuller is a passionate disability advocate and stand-up comedian. Pamela shares her journey with Tourette syndrome and how humor has helped her tackle tough conversations about disabilities.Pamela opens up about finding the right balance between vulnerability and oversharing, the challenges of accommodating disabilities in public spaces, and her unexpected shift from stand-up to storytelling. Pamela discusses the impact of her experiences on her mission to create more inclusive environments.Key Moments08:05 Challenging stereotypes.14:27 Humor fosters resilience.17:37 Goals: laughter and inclusivity.30:53 Accepting emotions reduces judgment.43:45 Tourette's and performance.Connect with Pamela SchullerLinkedIn: https://www.linkedin.com/in/pamelaschuller Website: https://pamelacomedy.com/ 

Rachel Lowenstein, Founder and Culture Expert at Rachel Lowenstein Consulting and Divergent Convergent, joins Lily Newton and Erin Hawley on the show. Rachel talks about why neuro-inclusion is a crucial part of workplace accessibility and how her work with Divergent Convergent is making a difference. Rachel also opens up about her own experiences with finding her true identity, avoiding burnout, and shifting from a corporate job to running her own business. In this episode, Rachel shares her thoughts on creating inclusive work environments, the challenges of traditional corporate settings, and the importance of community support.Key Moments13:41 Impact of Inclusive Marketing26:34  Building Authentic Friendships35:47 Mentor’s Advice: Pay It Forward47:35 Remote Work and InclusionConnect with Rachel LowensteinLinkedIn: https://www.linkedin.com/in/rachel-lowenstein-49431a38Instagram: https://www.instagram.com/rachelissan/?hl=en Divergent Convergent: https://parsnip-tetra-f2ny.squarespace.com/ 

"The journey of self-acceptance is ongoing and deeply personal."Jennifer Gasner, author of *My Unexpected Life: Finding Balance Beyond My Diagnosis*,shares her journey of self-acceptance and understanding of her own identity. She explores the importance of supportive workplaces, the power of tell your own story, and addressing misconceptions about disability.Jennifer also highlights her personal growth in accepting help and fostering inclusivity. Her story is a powerful testament to self-acceptance, resilience, and the push for a more inclusive world, providing guidance for anyone navigating their own journey.Timestamps0:00 Jennifer Gasner’s Story 10:45 Finding Balance20:30 Embracing Change30:00 Breaking Barriers45:15 Everyday Triumphs55:00 Redefining Strength1:05:00 Looking ForwardConnect with Jennifer GasnerLinkedIn: https://www.linkedin.com/in/jennifer-gasner-4b1aaa50/ Website:https://jennifergasner.com/ My Unexpected Life by Jennifer Gasner: https://www.amazon.com/My-Unexpected-Life-Finding-Diagnosis/dp/B0CCCPG1ZJ 

Author and Activist, Lauren Melissa, shares a powerful story of resilience and creativity. Diagnosed with autism in her twenties, Lauren Melissa turned the challenges of the COVID-19 pandemic into an opportunity, hand-writing a novel that was later accepted by Bold Strokes Books. Based in New York City, she passionately advocates for the representation of queer, BIPOC, and disabled individuals in fiction, bringing to life diverse, multiracial, neurodivergent, and queer characters. Her journey is a powerful testament to the strength found at the intersections of identity and creativity.Timestamps08:27 Getting Into Writing16:03 Having Relatable Characters in Fiction21:16 Portraying Neurodiversity in Fiction 25:09 Getting Published As An Independent Publisher33:34 Advocacy on Autism, Race, and Queerness44:12 Social Expectations, Codependence, and Autistic IdentityConnect with Lauren Melissa EllzeyLinkedIn: https://www.linkedin.com/in/laurenmellzey Website: https://laurenmelissaellzey.com/ 

"I don't concern myself with what they get wrong. I like to just show up as myself and then let any preconceived notion, if there is any, flow like, float away”Oliver Scheier, is a 19-year-old filmmaker, artist, and sophomore in college. Oliver discusses his approach to authenticity in both his work and personal life. He shares insights on his short film "Read a Page," his journey as a young artist, and how he navigates the perceptions of others.Key Moments00:00 Embracing individuality13:01 Life-changing question15:12 Gaelynn Lea's inspiring violin journey23:54 Grateful for diverse talent support26:59 Joy in directing, beyond acting37:43 University program: ADHD, autism support49:50 Educators' role in accessibilityConnect with  Oliver ScheierWebsite: https://news.tulane.edu/news/tulane-freshman-muscular-dystrophy-finds-joy-and-fulfillment-campus Read a Page: https://www.youtube.com/watch?v=h9SfkFG3lL4 

Your co-hosts Erin & Lily have a special in-person segment for the first time ever on the podcast. They Kick things off by discussing the significance of Disability Pride Month and the joys of creating content together as friends who are both disabled.They also discuss some light-hearted topics like newfound interests—Erin’s evolving relationship with pizza and Lily’s dive into the world of fantasy books, including some great disability representation in certain titles. They get real about the power of virtual friendships, especially within the disability community, and how these connections help navigate their experiences authentically.Timestamps09:19 Embracing wheelchair for comfort21:02 Public perception and aging with disability26:21 Masculinity, ableism, and disability31:51 Susan B. Anthony's advocacy35:09 Government, ableism, and organizing change48:18 Theater accessibility solutions52:19 Budget pushback on accessibility59:55 Theater, friendships, and communityConnect with Lily NewtonLinkedIn: https://www.linkedin.com/in/lily-newton-3b0b5b229Website: https://www.easterseals.com/Connect with Erin HawleyLinkedIn: https://www.linkedin.com/in/erinhawley2Website: https://www.easterseals.com

In this episode, hosts Erin and Lily interview Jenna Bainbridge, an actress, singer, and accessibility advocate. Jenna shares her journey as the first wheelchair user to perform in a new musical on Broadway, debuting in the award-winning "Suffs." She discusses her career and daily life as an ambulatory wheelchair user, challenging misconceptions and emphasizing the importance of accessibility and personal freedom.Jenna explains how her wheelchair enhances her ability to navigate New York City, offering independence in an often inaccessible environment. She highlights the spectrum of capabilities and needs, breaking down binary views of disability. Her role in "Suffs" underscores the power of collective activism and the importance of every action in contributing to a larger movement.The episode also touches on Jenna's work with Consultability, a consulting company she co-founded to make theater spaces more accessible. Her experiences offer a rich discussion on the intersections of art, disability, and advocacy, providing listeners with a deeper understanding of inclusivity's importance in all areas of life.Timestamps00:00 Wheelchair allows freedom and less exhaustion.09:19 Embracing wheelchair use for everyday comfort.12:06 Navigating public perception of disability is exhausting.21:02 Disability euphemisms conceal the reality of aging.26:21 Masculinity and ableism 31:51 Susan B. Anthony's advocacy, protests, and power.35:09 Messy government, ableist viewpoints, organizing for change.43:06 Inclusion in SUFFs provides representation for disabilities.48:18 Theater accessibility efforts focus on practical solutions.52:19 Budget pushback about accessibility improvements. 59:55 Theater creates close friendships and community quickly.01:01:42 Interview wrap-up Connect with Jenna BainbridgeInstagram: https://www.instagram.com/bainbridgejenna/?hl=enWebsite: https://www.jennabainbridge.com/Suff the Musical: https://suffsmusical.com/