Explorez tous les épisodes du podcast Everything You Know About Disability Is Wrong

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 Moments

02:46 Redefining independence and interdependence

10:48 Becoming a therapist after anxiety and loss

16:18 Balancing Disability Pride with grief

25:39 Managing self-image as a content creator

33:00 Finding community with other disabled creators

41:36 Rethinking mental health care in schools

47:43 Know the facts: 1 in 4 people are disabled

Connect with Amanda Steijlen

Instagram: @amandasteijlen
Website: https://www.truebloomtherapy.com
Nonprofit: 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 everyone

Key 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 disability

Connect with Courn Ahn
Linkedin: https://www.linkedin.com/in/courtneyahndesign 

Website: https://www.courtneyahndesign.com/

Instagram: https://www.instagram.com/candy.courn/

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 Moments

00:00 Authentic casting matters

03:44 Frustration with film clichés

11:38 Tart cherry juice helps sleep

14:20 Joining Easterseals' campaign

17:14 Destigmatize accessibility

Connect with Lily Newton

LinkedIn: https://www.linkedin.com/in/lily-newton-3b0b5b229

Website: https://www.easterseals.com/

Connect with Erin Hawley

LinkedIn: https://www.linkedin.com/in/erinhawley2

Website: 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 Moments

00:00 Multi-faceted journey

06:24 Music and family enhance wellness

17:53 Opening up about Down syndrome

22:19 Perfect fit for the roles

27:26 Redefining Stereotypes Through Storytelling

45:25 Education integration fosters community

Connect with Madison Tevlin
Instagram: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 Moments

08:05 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 Schuller
LinkedIn: 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 Moments

13:41 Impact of Inclusive Marketing

26:34  Building Authentic Friendships

35:47 Mentor’s Advice: Pay It Forward

47:35 Remote Work and Inclusion

Connect with Rachel Lowenstein
LinkedIn: https://www.linkedin.com/in/rachel-lowenstein-49431a38

Instagram: 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.

Timestamps

0:00 Jennifer Gasner’s Story 

10:45 Finding Balance

20:30 Embracing Change

30:00 Breaking Barriers

45:15 Everyday Triumphs

55:00 Redefining Strength

1:05:00 Looking Forward

Connect with Jennifer Gasner

LinkedIn: 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.

Timestamps

08:27 Getting Into Writing

16:03 Having Relatable Characters in Fiction

21:16 Portraying Neurodiversity in Fiction 

25:09 Getting Published As An Independent Publisher

33:34 Advocacy on Autism, Race, and Queerness

44:12 Social Expectations, Codependence, and Autistic Identity

Connect with Lauren Melissa Ellzey

LinkedIn: 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 Moments

00:00 Embracing individuality

13:01 Life-changing question

15:12 Gaelynn Lea's inspiring violin journey

23:54 Grateful for diverse talent support

26:59 Joy in directing, beyond acting

37:43 University program: ADHD, autism support

49:50 Educators' role in accessibility

Connect with  Oliver Scheier

Website: 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.

Timestamps

09:19 Embracing wheelchair for comfort

21:02 Public perception and aging with disability

26:21 Masculinity, ableism, and disability

31:51 Susan B. Anthony's advocacy

35:09 Government, ableism, and organizing change

48:18 Theater accessibility solutions

52:19 Budget pushback on accessibility

59:55 Theater, friendships, and community

Connect with Lily Newton

LinkedIn: https://www.linkedin.com/in/lily-newton-3b0b5b229

Website: https://www.easterseals.com/

Connect with Erin Hawley

LinkedIn: https://www.linkedin.com/in/erinhawley2

Website: 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.

Timestamps

00:00 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 Bainbridge

Instagram: https://www.instagram.com/bainbridgejenna/?hl=en

Website: https://www.jennabainbridge.com/

Suff the Musical: https://suffsmusical.com/

Your co-hosts Erin & Lily have a special segment today called “Just Between Us!” Today’s episode is all about the importance of Disability Pride Month. They share their thoughts on why it's crucial to celebrate being disabled and not just focus on ableism. Erin & Lily also discuss how pride in their identities as disabled people and as friends empowers them. 

We hope you enjoy today’s real (and unfiltered) episode. Happy Disability Pride Month!

Timestamps

04:06 Claiming pride in queer and disabled identity.

06:46 I understand the need to educate, but...

13:14 Navigating disability pride in online content.

14:12 Discussion on sharing disabled experiences and challenges.

18:06 Experience of cultural recognition.

21:38 Embracing disability pride, simplifying routines for ease.

28:25 Being proud of oneself fights ableism.

Connect with Lily Newton

LinkedIn: https://www.linkedin.com/in/lily-newton-3b0b5b229

Website: https://www.easterseals.com/

Connect with Erin Hawley

LinkedIn: https://www.linkedin.com/in/erinhawley2

Website: https://www.easterseals.com/

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 Moments

06:01 Awakening to Advocacy

07:11 Diverse Representation in Fashion

19:02 My Disability Advocacy Journey

23:44 Redefining Disability Through Experience

34:37 Issues in Disability Fashion Inclusion

45:00 Empowering Disability Representation

Connect with Jillian Curwin

LinkedIn: https://www.linkedin.com/in/jillian-curwin-04827056 

Website: https://mascotsmatter.net/about-page/  

Amanda McGrory, a four-time Paralympian and seven-time Paralympic medalist shares her journey as an elite athlete. She addresses the pervasive stereotypes and misconceptions surrounding disabled athletes and how they are often misrepresented in the media.

Throughout the conversation, the importance of authentic representation in media and sports is highlighted, focusing on the significance of community support. She discusses her struggles with eating disorders and finding community through adaptive sports.

Amanda discusses the critical need for authentic representation in sports and media, highlighting how real portrayals can create a more inclusive society. Her insights reveal that being a disabled athlete is just one facet of her multifaceted identity. Amanda advocates for a broader recognition of the everyday achievements of people with disabilities without sensationalism.

Erin, Lily, and Amanda discuss disability pride and the power of community. Amanda shares about the lack of control she felt as a child and how that led to her struggles with eating. They talk about the power of finding community with other disabled people and how finding adaptive sports brought Amanda the community that led her to her own healing and sense of pride in her identity. 

Timestamps

08:53 Amanda’s athletic career trajectory.

12:19 Athletes and inspiration are both complex issues.

19:21 Realizing potential through disability and the inspiration narrative.

24:55 The harm of overcoming narratives, Disability Pride Month.

31:14 Amanda’s unexpected career in broadcasting.

34:12 Lived experience is crucial for understanding disability.

39:15 Amanda’s experience struggling with eating, finding support, and control.

48:57 Airline staff often disregard the needs of disabled passengers.

54:37 The importance of disability history.

57:16 University of Illinois Galesburg campus program summary.

01:02:18 Emphasizing the importance of accessibility, University of Illinois Accessibility

Connect with Amanda McGrory

LinkedIn: https://www.linkedin.com/in/amanda-mcgrory

Instagram: https://www.instagram.com/alittlechipped/?hl=en

Website: http://www.amandamcgrory.com/

In this episode, Chelsea Bear, a content creator and disability advocate, shares her experiences and challenges as a lifestyle influencer. Chelsea highlights the importance of embracing her disability wholeheartedly and the sense of community and validation it brings. She discusses how Disability Pride Month encourages individuals to own their disabilities proudly, even on tough days.

The co-hosts Erin and Lily resonate with Chelsea's experiences, sharing their struggles and triumphs in accepting their disabilities, while emphasizing the transformative power of community and shared experiences.

The episode showcases Chelsea's impactful transition from a public relations professional to a dynamic social media advocate. Her authentic and organic approach to content creation, driven by personal stories and unfiltered passion, sets her apart. Chelsea candidly discusses the pressures of being a disability advocate and the balance between addressing systemic issues and sharing her narrative.

Timestamps

00:00 Intros and Audio Descriptions

03:39 Addressing assumptions about living with physical disability.

08:24 PR career taught communication and brand values.

11:45 Creating social content to connect and share.

15:41 Pressure to advocate for disabilities in lifestyle.

17:29 Learning journey, advocacy, spread awareness, disability, daily impact.

20:34 Discussion on disability experience and authenticity concern.

24:25 Welcoming community addressing accessibility and disabilities.

29:20 Accepting disability empowers connection and self-worth.

30:50 Taking ownership of identity leads to pride.

36:38 Social media expanded my disability community connections.

38:29 Social media can connect and empower people.

42:37 Learning to navigate health challenges with openness.

45:53 Medical schools need to be more inclusive.

49:56 Embracing disability transformed my life positively.

Connect with Chelsea Bear

LinkedIn: https://www.linkedin.com/in/chelseabear/ 

Instagram: https://www.instagram.com/realchelseabear/?hl=en 

Website: https://chelseabear.com/ 

In this episode, Cory shares his experiences exploring the world as a wheelchair user, from group trips to international destinations to navigating the challenges of air travel accessibility. Learn about Cory’s blog, Curb Free with Cory Lee, and its company non-profit, The Curb Free Foundation, which funds dream trips for wheelchair users. Discover practical tips on accessible travel planning, insights on preparing for travel obstacles, and the importance of building a strong community for people with disabilities. 

Cory also talks about his children's books that feature characters with disabilities, aiming to educate and promote inclusivity among young readers. 

Don't miss hearing Cory's positive travel experiences and the joy of accessible tourism. 

Timestamps

00:00 Cory’s work includes a children's book and foundation.

03:34 Public disregard for me becomes increasingly unsettling.

09:24 Excited traveler faces job rejection, plans trip.

10:41 Lack of travel info inspired Curb Free with Cory Lee blog

14:34 Launched the Curb Free Foundation in 2022.

17:41 Promote travel to more accessible destinations.

23:04 Book promotes wheelchair travel and representation for children.

24:24 Children's books shape perception and combat ableist stereotypes.

29:40 Wheelchair broke, duct taped, urged DOT report.

32:24 Air travel for wheelchair users is improving.

34:17 Switzerland trip with incredible accessibility experiences.

38:15 Wheelchair user plans trips 6-12 months ahead.

40:14 Double-sided Velcro and Able Sling improve transfers.

45:12 Community brings joy and understanding to members.

47:18 Advocate for visibility and living full lives.

51:30 Travel insurance with preexisting conditions saves money.

Connect with Cory Lee

LinkedIn: https://www.linkedin.com/in/cory-lee/

Instagram: https://www.instagram.com/curbfreecorylee/?hl=en

Website: https://curbfreewithcorylee.com/

In today’s episode, we have Spencer West! From discussing the challenges of accessing queer spaces and nightlife to setting boundaries as a disabled content creator, this conversation sheds light on pivotal issues affecting the LGBTQ+ and disabled communities. 

Spencer shares his personal experiences, advocacy work, and the role of social media in promoting awareness.

Don't miss this engaging episode with Spencer West!

Timestamps

00:00 Spencer West: Keynote speaker, activist, trailblazer, author.

06:00 Navigating intersectional identities and privacy boundaries on TikTok.

12:47 The importance of sharing disabled experiences in media.

16:24 Relate stories to others, especially healthcare workers.

17:17 Sharing personal stories, lessons, and avoiding inspiration porn.

20:41 Learning boundaries from an older mentor, embracing self.

26:46 Struggles with queer identity in nightlife venues.

28:16 Toronto has organizations creating accessible spaces.

36:03 Creating regular content as a revenue stream.

38:04 Grateful for age and experience in authenticity.

43:23 Learning about disability justice, confronting internalized ableism.

46:02 RuPaul's reminder: love yourself, love others.

48:56 Recognition of mutual support in personal relationships.

51:34 Privilege of walking, trouble with wheelchair damage.

54:49 Agreement on disability visibility through social media.

57:35 Celebrate LGBTQ+ and disability pride this month.

Connect with Spencer West 

Instagram: https://www.instagram.com/spencer2thewest/?hl=en

TikTok: https://www.tiktok.com/@spencer2thewest?lang=en

In this episode, hosts Lily Newton and Erin Hawley sit down with actor, model, content creator, and CEO of the lifestyle brand Live Solo,  Lolo Spencer. Known for her advocacy work and trailblazing efforts in changing the narrative around disability, Lolo shares her incredible journey and vision for a more inclusive world.

We also explore the broader implications of representation in Hollywood and the importance of community building, with Lolo emphasizing the need for disabled actors to be cast in diverse roles. 

Tune in and be part of the movement towards a more inclusive society!

Timestamps

00:00 Lolo Spencer, actor and disability advocate, succeeds.

03:26 Misconceptions about ambulatory wheelchair users' disabilities.

07:51 Difficulty accessing doctor's office due to age.

10:48 Feeling judged for being young and able.

14:03 Friends collaborate, enjoy and resonate with humor.

18:28 Importance of clear communication for disability accommodations.

19:38 Production must fully support disabled talent's needs.

25:47 Enhancing audience experience through laughter and enjoyment.

26:34 Season's exciting trailer, surprisingly, accessible to all.

30:46 Creating community through inclusive lifestyle brand blog.

34:34 Bringing community together through events and activities.

38:19 US healthcare detrimental; bias against black women.

40:51 Questioning the healthcare system's dismissiveness towards accessibility.

45:15 Lily searching for EDS diagnosis and medical diversity.

47:18 Collaboration of traditional and alternative medicine beneficial.

50:55 Community ties into information sharing and health.

55:08 Attitude towards disability needs to change.

57:25 Lolo praised for support and collaboration efforts.

Connect with Lolo Spencer

Instagram: https://www.instagram.com/itslololove/

Visit Live Solo: https://www.livesolo.

In today's episode, Erin and Lily are joined by Tina Friml, a New York-based comedian who shares her unique experiences navigating the comedy scene. We'll explore the misconceptions about disabilities, the role of humor and radical self-acceptance, and turning casual ableism into comedy gold.

From the sometimes illogical things Tina can and cannot do, to her decision to only perform in ADA accessible venues, this episode is packed with insights.

Get ready to tune in, laugh, and learn as we welcome you to another episode of Everything You Know About Disability is Wrong. Let's get started!

Timestamps

00:00 Disabled with mild cerebral palsy needing accommodations.

09:39 Challenges of being labeled and misunderstood.

10:56 Navigating disability and others' perceptions and actions.

19:37 Comedy often exploits societal expectations for jokes.

25:25 Some struggle to understand disabilities, affecting interactions.

29:18 Prioritizing ADA accessibility at event venues promoted.

34:04 Struggling to find accessible venues in various cities.

43:59 Unexpectedly positive experience appearing on Jimmy Fallon.

50:27 Easterseals podcast highlights equity, access, and accommodation.

51:41 Traveling alone, finding increasing airport accommodations.

01:00:45 Comedy community support, challenges of being underestimated.

01:02:22 Disability can be both a benefit and drawback.

Connect with Tina Friml:

Instagram: https://www.instagram.com/tinafriml/?hl=en

In today's episode, your hosts Lily Newton and Erin Hawley have a heartfelt conversation with our guest, Rawan Tuffaha. Rawan is the lead singer of the ASD Band, a group composed entirely of autistic musicians, which shines a light on talent within the autistic community. Besides her music career, Rawan is an advocate for autism acceptance and disability employment, challenging misconceptions and pushing for more inclusive practices.

Join us as we delve into Rawan's journey, from forming the ASD Band to her academic pursuits at Metal Works Institute, her experiences with the documentary about her band, and her thoughts on the misconceptions people often have about individuals on the autism spectrum. We'll also hear about her challenging yet rewarding experiences managing school, autism, and her music career, including her exciting upcoming album, "Almost Flawless."

This episode is not only an exploration of Rawan's personal and professional life but also a broader discussion of the challenges faced by individuals with disabilities as they transition into adulthood, particularly in accessing employment and continuing to receive support.

Stay tuned as we celebrate the exceptional contributions of individuals like Rawan and discuss how organizations like Easterseals are paving the way for full access, equity, and inclusion for people with disabilities and their families.

Timestamps

00:00 Podcast featuring Rawan Tuffaha, lead of ASD Band.

04:10 Documentary creation, album release amidst COVID-19 impact.

08:18 Performed with Roger Hodgson, formed a band and overcame setbacks.

11:23 Started playing the toy piano and learned by ear.

14:41 Honest, raw music conveying autistic experience powerfully.

19:44 Gratitude for positive influences and values learned.

22:28 Struggle with identity and trust in popularity.

25:32 Teenagers realize the importance of loyal, caring friends.

29:47 Passion for the Jonas Brothers, autism acceptance.

31:58 Struggling with travel plans, rehearsals, and charity.

35:04 Understanding the travel process with help from family.

38:26 Autism diagnosis at 1, received varied support.

40:57 Seeking support in university, aiming for success.

46:00 Struggles finding a job as an autistic person. Need for inclusion and understanding.

49:51 Multitasking autism advocate defies stereotypes with grace.

Connect with Rawan Tuffaha

Instagram: https://www.instagram.com/rawansinger/?ref=tablehopper.com

Navigating Independence and Relationships: Subodh and Aarti's Journey on EYK | Season 3, Episode 2

Welcome to a special episode of Everything You Know, presented by Easterseals. Today, we've got a truly enlightening conversation lined up with our guests, Subodh Garg and his sister, Aarti Garg. Subodh, a charismatic individual diagnosed with autism at the age of 3, shares his journey towards independence, his exceptional memory, and his experiences with dating and social interactions. Aarti, who plays a crucial role in managing Subodh’s social engagements and safety online, provides insight into their sibling dynamics and the support systems that help Subodh navigate his challenges and aspirations.

In this episode, we delve into the importance of the diverse representation of autism in media, the critical role of technology in improving communication skills, and the universal struggles with dating and social skills. Subodh also discusses his participation in the show Love on the Spectrum, his employment goals in accounting, and his passion for travel. Join hosts Erin Hawley and Lily Newton as they explore these topics and more, offering a broader perspective on neurodiversity and the common human desires for love and connection. 

Stay tuned as we challenge the misconceptions about autism and celebrate the diverse capabilities and aspirations of individuals on the spectrum.

Timestamps

0:00 - Introduction to today's episode with hosts Erin Hawley and Lily Newton, featuring guests Subodh and Aarti Garg.

2:45 - Subodh Garg discusses his journey towards independence and his aspirations in accounting.

5:20 - Exploring the sibling dynamics between Subodh and Aarti Garg, including the misconceptions about their relationship.

7:40 - Aarti Garg talks about her role as a manager rather than a caretaker in Subodh's life.

10:15 - Challenges of making and maintaining friendships as adults, emphasized by Subodh's experiences.

13:30 - Subodh's take on his participation in Love on the Spectrum and developing his dating skills.

18:29 - The impact of "Love on the Spectrum" on Subodh’s life, as discussed by Aarti.

21:10 - Conversation about the universal struggle with dating and social skills.

24:05 - Subodh and community building: From online dating to maintaining connections with the show's cast.

27:50 - The transportation hurdles and Subodh's use of Access, a paratransit service.

30:16 - Subodh’s employment ventures at Teledelis and Insight, and his educational goals.

33:45 - Lily Newton and Aarti Garg critique the representation of disability in mainstream media and specific TV shows.

37:12 - The role of digital content in Subodh’s life, including his Instagram engagement and travel posts.

40:40 - Detailing the disability readathon initiative and its significance, shared by Erin Hawley.

43:28 - Reflections on maintaining friendships amidst life changes and busy schedules.

45:35 - Subodh’s exceptional memory skills and affinity for recalling specific dates and personal milestones.

49:20 - Deep dive into Subodh's past therapies, ongoing supportive services, and aspirations for travel.

52:15 - Discussion on the broader spectrum of autism and the personal ambitions of individuals with autism.

55:00 - Closing thoughts, upcoming initiatives, and a thank you to Subodh and Aarti Garg for their participation.

57:10 - Call to action for disability advocacy and an invitation to listen in to future episodes presented by Easterseals.

Connect with Subodh Garg

Instagram: https://www.instagram.com/traveling_subodh/?hl=en

Connect with Aarti Garg

Instagram: https://www.instagram.com/aartipaarty/?hl=en

Join our hosts, Lily Newton and Erin Hawley, as they sit down with the riveting Gaelynn Lea, whose voice and violin strings resonate with the force of change, challenging our perceptions of ability and accessibility.

Imagine being told that your dream career is not designed for someone like you. Now picture breaking that mold and redefining what is possible. Gaelynn Lea did just that. Born with a physical disability, Gaelynn transformed the way the violin is played, gripping it like a cello. With this twist, she orchestrated her way to stardom after winning NPR's Tiny Desk concert. But her journey is more than a story of musical success it's a powerful narrative of breaking barriers and rewriting the stanzas of inclusivity.

Tune in, and you may just find that the key to unlocking true inclusivity and happiness lies within the stories that defy silence and demand to be heard.

Key Moments

10:39 Disability is more than just assumptions.

12:18 Name experiences, avoid overgeneralizing, and amplify underrepresented voices.

27:01 Rant on marriage inequality and divorce advice.

30:49 Advocating for disabled rights and innovation.

35:18 Teachers adapt instruments without needing deep disability knowledge.

43:41 Importance of owning your work and feelings.

46:09 Discovering hidden desires through writing memoirs.

54:48 Recognize the knowledge gap, educate, and make events accessible.

56:47 Advocate for accessibility and supporting accessible businesses.

01:01:52 Inappropriate discussion led to realization and job.

01:09:53 Disabled community excels; companies should embrace inclusion.

Connect with Gaelynn Lea

Instagram: https://www.instagram.com/gaelynnlea/

Website: https://violinscratches.com/

In this exciting episode, Jameela Jamil, actress, activist, and television host, shares how she began to understand her own disability while navigating the entertainment industry. We're working through shame, making our own rules, and creating inclusive spaces together to break barriers. Are you in?

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 Moments

00:00 Intro and Audio Descriptions

06:53 Own Voices, Own Stories Award for Disabled Authors

12:33 Internalizing Blame; Autism, ADHD, and Trauma

21:50 Autism and Learning to Be Your True Self

26:49 Embracing Hyperfocus in a Positive Way

28:21 Job Challenges and Personal Struggles

44:44 Unique Traits of Autistic Girls

59:09 Understanding and Accepting 

Connect with Kyla Mora 

Twitter: https://x.com/kylapmora 

Website: https://cherrylakepublishing.com/shop/show/54094 

Jedidiah Mora

Website: https://cherrylakepublishing.com/shop/show/54094 

Erin and Lily are joined by award-winning recording artist, Youtuber and disability advocate Lachi. Lachi talks about her DEI work in the music industry and the nuances of ableism as it relates to trauma, class, race, and gender.

Collette Divitto, founder and CEO of Collettey’s Cookies, turned her love for baking into a successful business where half of the staff has a disability. She joins hosts Erin and Lily to chat about her successes, life as an entrepreneur, and the stigma many disabled people face while building their careers.

As a fashion model, actress, and disability rights advocate, Jillian has a lot going on! Throughout her career, she has encountered comments from strangers about her disability. Learn about how she became inspired by those experiences to create safe, inclusive spaces on social media.

Lindsey Rowe Parker, author of the children’s book, “Wiggles, Stomps, and Squeezes Calm My Jitters Down,” joins the podcast to discuss why disability representation is important in children's literature. This episode also explores the often challenging road toward self-acceptance.

Kaelynn Partlow, autistic advocate and Senior Therapist at Project Hope Foundation, Inc., was featured on the Netflix series called, “Love on the Spectrum.” She joins hosts Erin and Lily to chat about neurodiversity, social media advocacy, and more!

In this episode, we talk about disability pride with Vilissa Thompson, who is celebrating the 10 year anniversary of her work!

In this special episode, hosts Erin and Lily bring on their romantic partners to chat about their love origin stories, dealing with conflict as multiply-disabled couples, and the importance of strong communication in a relationship.

Dom Evans (they/he) is a filmmaker, activist, public speaker, and writer. They dig deep into discussions with Erin and Lily about health care and mental health. Plus, a live declaration of love!

Author of Demystifying Disability, Emily Ladau, discusses her experiences with ableism and invasive questions on dating apps, and dealing with breakups. Erin and Lily join Emily in sharing their cringiest first dates and how to know when love is real.

Erin and Lily are in conversation with comedian, actor, and founder of the Easterseals Disability Film Challenge, Nic Novicki. Nic talks about being a father and husband while working in Hollywood, and how your priorities shift when becoming a parent. The group discusses authentic disability representation in movies, popcorn betrayal, and a love story so sweet that it ended up on the big screen!

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 Moments

7:00 Overcoming Isolation and Disability

14:13 Collective Advocacy in Action

22:00 Disability Language Made Simple

23:25 Safe Spaces 

35:34 Beyond Assumptions: Tiffany’s Story

49:16 Mental Health 

01:02:22 Reaching Young Readers

Connect with Tiffany Yu

Twitter: https://x.com/imtiffanyyu 

Website:http://tiffanyyu.com/ 

The Anti-Ableist Manifesto: https://www.tiffanyyu.com/book 

Erin and Lily speak with award-winning filmmaker, musician, and creator of the Everything You Know About Disability is Wrong theme song, Jennifer Msumba. Jennifer shares her experiences in unrequited love as an autistic woman. The three women chat openly about the awkwardness of dating, being true to yourself, and farts!

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 Moments

09:14 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 Competence

52:36 Sensory Experiences Founder

Connect with Dr. Hoby Wedler

LinkedIn: 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 Moments

00:37:03  Initial Rejection

00:38:53 Mother’s Screening

00:44:50  Shared Experience

00:45:30 Cultural & Generational Factors

10:15 Neurodivergence vs. Mental Health

30:00 Empowering Language

45:15 Authentic Conversations

55:00 Cultural Pressures

1:05:00 Dyslexia Advocacy

1:30:00 Access Through Tutoring

1:35:00 Reclaiming “Inspiring”

Connect with Onyinye Udokporo

LinkedIn: linkedin.com/in/onyinyeudokporo

Personal Website: onyinyeudokporo.com
Company 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 Moments

13:32 - 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 Jacobs
Instagram: 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 Moments

06:27 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 Verdile
LinkedIn: 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 Moments

2:54Accessibility in spaces

18:27 Living with EDS

31:28 Experiencing medical gaslighting

52:45 Advocating for inclusive training and support

Connect with  Annie Segarra
LinkedIn:https://www.linkedin.com/in/anniesegarra 

Website:https://invisibleproject.org/annie-segarra/ 

Disability Pride looks different for everyone. Sometimes, it begins with something as simple as getting dressed.

 

In this special Disability Pride Month episode of Everything You Know About Disability Is Wrong, we are joined by Joshua Norris, CEO of Silverts Adaptive Clothing & Footwear and IZ Adaptive, and creator Sidney Raz to explore how adaptive clothing can be both a practical accessibility tool and a powerful form of self-expression.

 

Joshua shares the nearly century-long history of Silverts, the world's first adaptive clothing company, and the mission that inspired him to lead an employee buyout to preserve the brand. Sid reflects on his life-changing cancer diagnosis, total stomach removal, and the ongoing process of navigating disability, grief, and acceptance in the public eye. Together, the conversation highlights why accessibility, fashion, and disability pride belong in the same conversation.

 

The group also discusses the importance of adaptive clothing beyond function, how small acts of care can create meaningful change, misconceptions about cancer and disability, and why making accommodations for yourself is something to be proud of. Whether you're newly navigating disability, supporting someone you love, or simply interested in building a more accessible world, this episode is an honest reminder that disability pride doesn't require having everything figured out—it simply asks us to show up as we are.

 

This episode is in celebration of a brand-new partnership between Easterseals, Silverts, and IZ Adaptive! From July 6–31, 5% of every purchase at silverts.com and izadaptive.com supports Easterseals programs across the U.S. and Canada.

In this episode, we’re joined by content creator, beauty influencer, and disability advocate Steffi Gonzalez for a conversation about representation, disability visibility, and what it means to take up space online unapologetically.

Steffi shares how growing up around photography and beauty eventually led her into content creation, and how a simple moment with her husband changed the way she saw herself — and her wheelchair — on camera. From fashion and beauty influencing, to advocacy work and accessibility conversations with major brands, Steffi reflects on building a platform rooted in authenticity, confidence, and community.

The conversation also explores mental health and boundaries as a creator, navigating online comments, internalized ableism, and the importance of disabled representation in beauty and fashion spaces. Steffi also discusses her Instagram series “My Normal is Not Your Normal,” where she highlights the different ways disabled people navigate everyday life while reminding audiences that different does not mean lesser.

This episode is an honest, funny, and deeply thoughtful conversation about disability visibility, inclusion, and creating the kind of representation you wish you had growing up.

Voice actor Maria Pendolino joins Lily for an episode that challenges the narrow way society views disability. Maria shares her experiences as an ambulatory mobility-aid user, explaining how fluctuating conditions are often misunderstood or erased in media and medicine. With candid honesty, she connects her journey of psoriatic arthritis, knee replacements, and self-advocacy to building a career that truly works for her body, through voiceover and a fully accessible home studio.

The conversation also takes on fat bias in healthcare, how outdated tools like BMI continue to be used to deny or delay care, and the scripts Maria uses to set boundaries in appointments. Her message: you deserve to be treated as a whole person, not reduced to a number or assumption.

Maria details the creation of the Disabled Voice Actors Directory, now housed under the National Association of Voice Actors, which helps casting directors find authentic talent. It’s a resource born out of a belief that disabled people don’t just deserve representation on-screen, they should be hired behind the microphone, too.

Key Moments

02:50 Breaking the myth of disability as “all or nothing”

06:02 What fluctuating disability really looks like in practice

14:16 Age bias in surgery: when doctors refuse joint replacements under 50

21:31 Why BMI is flawed and how it blocks real care

29:46 Self-advocacy scripts: “I will not be weighed”

42:34 The audition turning point: “Are you limping?”

46:54 Building an accessible home studio and thriving as a voice actor

54:11 Founding the Disabled Voice Actors Directory

1:04:11 Know the Facts: fat phobia and systemic barriers

Connect with Maria Pendolino

Website: https://www.voicebymaria.com/ 

YouTube: https://www.youtube.com/channel/UCGkmvgiBP89fHUl9-8awQRA/videos 

Maria Pendolino - London Voice Over: https://www.londonvoiceover.com/artists/maria-pendolino/ 

Maria Pendolino - London Voice Over: https://voice123.com/voice-actor/voicebymaria 

Matthew Shapiro, founder and CEO of Six Wheels Consulting, joins hosts Lily Newton and Erin Hawley for a candid conversation about language, work culture, and the everyday practice of access. Matthew unpacks how assumptions show up in daily life, why “disabled” is a valuable identifier, and what it means to balance personal energy with public advocacy.

The conversation moves from nuance in calling out ableism to concrete advice for workplaces. Matthew shares practical examples that help everyone, like standing desks and curb cuts, and invites leaders to start with simple changes that reduce friction. He challenges listeners to rethink design from the ground up and to see access as standard, not a special add-on.

Across the episode, Lily and Erin connect language to outcomes. They underline that asking for what you need benefits teams, and that many improvements cost more thought than money. The result is a grounded roadmap for anyone ready to begin, learn, and keep going.

Key Moments

• 03:36 Assumptions and the myth of “needing to be fixed”

• 07:18 The push-pull of advocacy and fatigue

• 13:31 “Own the word”: why Matthew identifies as a disabled person

• 17:08 Ableism on social media and finding useful nuance

• 31:15 Standing desks, curb cuts and designing spaces that work for all

• 41:42 How to begin: start, listen, and make a plan you will actually use

• 45:19 It is not as daunting as people think

Connect with Matthew Shapiro

LinkedIn: https://www.linkedin.com/in/matthew-shapiro-16abb932 

Instagram: https://www.instagram.com/6wheelsconsulting/ 

Six Wheels Consulting website: https://www.6wheelsconsulting.com/ 

Your co-hosts Erin & Lily bring another “Just Between Us” conversation to Everything You Know About Disability Is Wrong. This time, they’re diving into disability language: why euphemisms like “differently abled” miss the mark, how identity-first vs. person-first language is used, and why words matter.

They share stories from their own journeys—how language has shaped their identities, how it can affirm or erase, and why offering grace and education is often the most powerful tool. With humor, honesty, and a few reframes, Erin and Lily show how shared vocabulary can build connection and strengthen advocacy.

Timestamps

00:38 Just Between Us: why language matters

01:40 Creating a disability language guide for Easterseals

02:40 Why euphemisms like “differently abled” don’t work

03:09 Identity-first vs. person-first explained

04:25 The importance of respecting personal preference

05:41 Autistic identity and self-definition

07:12 Erin’s shift from person-first to identity-first

08:55 Why treatment matters more than terminology

10:15 Writing and marketing with respectful language

Connect with Lily Newton

LinkedIn: https://www.linkedin.com/in/lily-newton-3b0b5b229

Website: https://www.easterseals.com/

Connect with Erin Hawley

LinkedIn: https://www.linkedin.com/in/erinhawley2

Website: https://www.easterseals.com/

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 Moments

05:47 “Disability is not a charity”: why it must be built into planning from the start

08:16 The business case for investing in accessibility and representation

12:38 Understanding the emotional labor behind self-advocacy

23:07 Why access means freedom of choice

28:58 Policy and personal experience: how one drives the other

Connect with Dylan M. Rafaty

Website: northtexasdisabilitychamber.com
LinkedIn: https://www.linkedin.com/in/dylanrafaty

Instagram: https://www.instagram.com/dylan_rafaty 

Dylan M. Rafaty website:https://dylanrafaty.com/
Podcast: Let’s Work Inclusively

• Listen on Spotify

Cole and Charisma Sydnor, known as “Roll with Cole & Charisma,” are digital creators with a global audience. Together, they share their lived experiences navigating life in an inter-abled relationship, challenging common misconceptions about disability, dependence, and support.

From early relationship vulnerability to navigating public perceptions online, Cole and Charisma reflect on how caregiving has shaped (but not defined) their connection. They also discuss the realities of sharing their lives publicly, including boundaries, mental health, and the impact of online visibility.

This episode unpacks how care exists in many forms—physical, emotional, and relational—and how it often flows both ways in relationships and communities. The conversation expands beyond romantic relationships to highlight a broader truth: caregiving is not limited to one role or identity.

It is something we all give and receive throughout our lives, often in ways that go unseen. It is dynamic, reciprocal, and deeply rooted in connection.

Easterseals is committed to meeting people where they are, with care that honors every role they hold. Learn more at easterseals.com.

On this episode of Everything You Know About Disability Is Wrong, we’re joined by Ron Funches, a stand-up comedian, actor, and recent cast member on The Traitors. Ron shares his perspective as both an autistic adult and a parent of an autistic son, reflecting on how his recent diagnosis has deepened his understanding of himself, his family, and the power of self-acceptance. 

Through humor and honesty, Ron discusses what autism acceptance looks like in real life—from recognizing shared traits with his son to navigating the transition to adulthood, caregiving challenges, and the importance of meeting people where they are. This conversation reinforces the importance of acceptance, accessible support, and empowering people with disabilities to thrive on their own terms.

Easterseals is committed to supporting autistic individuals and caregivers with resources, services, and community.