Podcast
Iconically Ill
Hosted by Laura Lyons · EN
Welcome to Iconically Ill, I'm your host Laura Lyons, where I interview other disabled and chronically ill people with humor and heart over the clinical part.
19episodes
Episodes
Newest firstAll episodes
We Talk Congenital Muscular Dystrophy
1w ago00:42:00Tap to summarizeWe talk Congenital Muscular Dystrophy with Kelly Berger and Avery Roberts Kelly and Avery are dynamic, empowered, rare disease warriors and disability champions who share their stories, spark conversations, and build a world that listens and activates real change. Their spirited advocacy is bold, personal, and impossible to ignore. They both live with the ultra-rare form of congenital muscular dystrophy (CMD), Collagen 6. They've turned their lived experiences into powerful platforms for global change. The fierce changemakers are driving visibility, authentic representation, and access, championing the next generation for a brighter, more inclusive future. Their podcast, Wheel Talk gives a front row seat to bold conversations about the thriving disability community. The show amplifies voices, breaks down barriers, and celebrates the power of disability identity. It's where wit, wisdom, and wheels are all part of the party. Follow Kelly at @thekellyberger and Avery at @Avery.nicole916 and their podcast at @thewheeltalkpodcast on Instagram Show transcript bit.ly/3UKUymI
Transcribe →We Talk Mast Cell Activation Syndrome and Screenwriting
2w ago00:43:35Tap to summarizeWe talk Mast Cell Activation Syndrome and screenwriting with Caitlin Rose Arcand. Caitlin is an award-winning screenwriter, producer and script exec. Her directorial debut feature, "Burn Baby Burn" (the chaotic gay mob movie), is currently in development after winning Best Feature Screenplay at Hollywood International Diversity, Best Feature Dialogue at Flight Deck Film Festival and Outstanding Achievement for a Feature Screenplay at the Massachusetts Independent Film Festival. She recently wrapped her directorial debut short "Starlyfe," to be released this spring. Previously, she produced the two award-winning queer short films, "Happy Hour" and "Oreo," in addition to working in production for Netflix, Luminant Media and Dirty Water Media. As a comedian and writer, Caitlin specializes in "the worst people you know," bringing to life all the unsavory characters that the East Coast has to offer. Her candid stories have been heard on stages all over the country, notably appearing at The North Carolina Comedy Festival, Solocom NYC, and The Portland Comedy Festival. In 2021, she was named one of CitiBank and Buzzfeed's Women to Watch for her women/LGBTQ+ centered humor platform, inspired by two sold-out years of Boston's only all-female comedy show, which she founded and hosted. Caitlin works in film and TV as a marketing & screenwriting executive through her company Arcand Entertainment & Creative. Follow Caitlin @caitlinrosearcand on Instagram Show transcript bit.ly/3UKUymI
Transcribe →We Talk Rheumatoid Arthritis
3w ago00:54:01Tap to summarizeWe Talk Rheumatoid Arthritis with Jennifer Chassman Browne. Jennifer has been an educator for over 25 years, and has experience working with students ranging from 3rd grade through the university level. Most of her work has been as an English, Creative Writing , and Social Studies teacher and a school leader. The majority of her leadership experience has been at the secondary level as an Assistant Principal, Associate Head, or Curriculum Director, where she has been focused on directing curricular programs and supporting teachers in developing instructional practices. Jenn has lived with Rheumatoid Arthritis since she was six years old and has recently founded a non-profit aimed at developing education and understanding around issues related to ability and advocacy for those living with disabilities. More Than a T-Shirt Company is a project that develops and sells t-shirts and stickers with disability positive messages. The company donates proceeds to partner organizations including the Arthritis Foundation and Autism Speaks. Five years ago, Jenn founded New Ground Educational Consulting. Her focus has been to develop and present workshops related to Inclusion and Belonging. She leads sessions on topics such as: Social Justice and Physical Space, Identity and Belonging, Implicit Bias, and The Weight of Disability for a variety of public and independent schools, non-profit organizations, and professional institutions. Jenn has been a featured guest on Pushing Limits, one of the only public radio shows focused on disability, and has also contributed columns to a variety of publications. Most recently, Jenn was the keynote speaker for the Pacific ADA Center's annual conference where she presented a session entitled, Beginning with Belonging; Reimagining the ADA. She has recently published a collection of poetry that includes pieces about living with a disability. Currently, Jenn is completing her book, See Us, Know US: Profiles of Disability which is a collection of profiles about people with disabilities. Each profile includes a portrait, a narrative biography, and an original poem written by Jenn for the person being profiled. Look for See Us, Know Us, which will be published in October. You can follow Jenn at @jenniferchassmanbrowne on Instagram. Show transcript bit.ly/3UKUymI
Transcribe →We Talk Endometriosis and Writing
4w ago00:40:35Tap to summarizeWe talk endometriosis and writing with Samara Breger. Samara is a writer and performer from Sleepy Hollow, New York. Her vampire Gothic, A LONG TIME DEAD, was named "the best Sapphic vampire book since...Carmilla" by the New York Times, as well as one of the best romances of 2023. She regularly performs musical improv in New York as well as around the country at comedy festivals. She lives in a little house with her wife and dog, both of whom are big fans of her work. Follow Samara at @yesjbreg on Instagram Show transcript bit.ly/3UKUymI
Transcribe →We Talk Congenital Central Hypoventilation Syndrome (CCHS)
Apr 2800:43:39Tap to summarizeWe talk Congenital Central Hypoventilation Syndrome (CCHS) with Jay Trivedi. Jay is a 34 year old individual diagnosed at birth with an invisible disability known as Congenital Central Hypoventilation Syndrome (CCHS). This disability is very rare and it involves a genetic mutation impacting the respiratory system. There are approximately 2000 cases of diagnosis worldwide. Patients diagnosed require mechanical ventilation during sleep. However, some patients require mechanical ventilation 24/7. Each patient's diagnosis is different. Some other symptoms of the diagnosis can include poor eyesight, poor temperature controls, and cognitive delays in young children. Most patients with CCHS can live full and healthy lives. They can achieve an education, build a successful career in the job market, and have families. Although there is no cure for CCHS and very little research is being done, CCHS Family Network and The CCHS Foundation are working together to continue raising funds and encourage friends/family to donate so the money can help go towards research and education. Although Jay has been living with this extremely rare and invisible diagnosis, it has never stopped him from achieving his two main goals, which are achieving an educational degree in Business Administration and gaining work experience needed to become successful in today's job market. Currently, he works full-time at one of the biggest retailers, Walmart. Jay is a volunteer advocate and member of two well-known disability organizations called The CCHS Foundation and Diversability Leadership Collective (DLC). On a professional level, Jay is heavily active on LinkedIn where he networks with individuals who can resonate with his life experiences. Follow Jay at jt.trivedi on Instagram Show transcript bit.ly/3UKUymI
Transcribe →We Talk Bone Tumor
Apr 2100:49:26Tap to summarizeWe talk bone tumor with Rachel Kenaston. Rachel is an actor, comedian, artist and filmmaker. She earned a BFA in Theatre from Marshall University and studied at Upright Citizens Brigade, the Squirrel and Magnet Theater. She can be found performing and photographing improv, sketch & standup comedy around NYC or working at House of Yes as Artist Liaison. Rachel is a founding member of Maxipad Productions, Flower Power Comedy, and the sketch team, Pitchfork Patty. Follow Rachel @rachelkenaston on IG/tiktok and rachelkenaston.com for her latest film & comedy projects Show transcript bit.ly/3UKUymI
Transcribe →We Talk OCD and Live Performing
Apr 1400:50:10Tap to summarizeWe talk OCD and live performing with Steve Whyte. Steve Whyte thought he had it all figured out until he left the womb. He was Elf #2 in the Old Greenwich Elementary School production of Twas The Night Before Christmas. Later, lured by the prospect of big money, Steve joined the improv world, and can be seen performing with The Armando Diaz Experience on Saturdays at 7:30 at the Magnet Theater in Chelsea. For money he edits video, and for fun he plays the drums. Follow Steve @steveinnyc on Instagram Show transcript bit.ly/3UKUymI
Transcribe →We Talk Functional Neurological Disorder
Apr 700:47:01Tap to summarizeWe talk Functional Neurological Disorder with Nieta Greene. Nieta Greene, a dedicated advocate for inclusivity and a sense of belonging, serves as the Chief Executive Officer and Founder of Disability Community for Democracy, Inc. She also serves as a member of the Cambridge Commission for Persons with Disabilities. She has experienced various disabilities since childhood that influence her daily existence. Yet, she remains resilient and proud as a Disabled Puerto Rican, Black, gender non-conforming, gay woman who openly champions her identity. Nieta's work is rooted in core principles of disability justice, emphasizing intersectionality, community-led solutions, and political empowerment. Her steadfast confidence precludes the need for her to apologize for her authentic self, as she diligently advocates for those unable to voice their concerns. Her inspiring determination motivated her to establish Disability Community for Democracy, Inc., following the 2024 election cycle, recognizing the need to safeguard the rights of individuals within the disability community and to provide a platform for political engagement grounded in intersectional disability justice. Her leadership exemplifies a commitment to transforming systemic barriers into opportunities for collective liberation and equity. Follow Nieta at @DCDinc12 on Instagram Show transcript bit.ly/3UKUymI
Transcribe →We Talk Cerebral Palsy and Journalism
Mar 1000:54:58Tap to summarizeWe talk Cerebral palsy and journalism with Erin Tatum. Erin is a Journalist, Copywriter, Project Manager and Entertainment Liaison. As a multidisciplinary journalist, she gravitates towards stories that illuminate an artist's perspective and highlight the unsung protagonists of the world around us. She is particularly invested in elevating subjects from marginalized communities and amplifying impactful social issues. She is passionate about spreading awareness for disability through laughter and sarcasm. Follow Erin at allegedly_erin on Instagram and TikTok. After this recording Erin's beloved mother passed away. We dedicate and honor her in this episode. Show transcript bit.ly/3UKUymI
Transcribe →We Talk ME/CFS and Live Performing
Mar 301:07:58Tap to summarizeWe Talk ME/CFS and live performing with Dan Fishback. Dan Fishback is a playwright and musician in NYC, with a two-decade body of work exploring the shadows of Jewish and queer life in the United States. His musical about Jewish socialists, The Material World, was called "the best downtown musical in years" by Time Out New York in 2012. From 2013 through 2020, Fishback ran The Helix Queer Performance Network--a series of programs designed to bring queer generations together and redress inequities in the world of queer arts and culture. In recent years, as Fishback has struggled with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), he has reoriented his artistic practice towards disability justice, with the rock musical Dan Fishback is Alive, Unwell & Living in His Apartment, which was commissioned by Joe's Pub at the Public Theater in 2024. Fishback is a member of Jewish Voice for Peace, and sits on the Joe's Pub Council. Follow Dan @dangerfishback on Instagram Show transcript bit.ly/3UKUymI
Transcribe →