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In this episode, Jenelle and Joy talk with their longtime friend Terri Rupp about identity, disability, motherhood, leadership, and ultra running. Terri shares how she moved from holding many leadership roles to finding balance through running, while also navigating blindness, hearing loss, and the everyday realities of raising teens in Las Vegas. They also explore what it means to be visible without becoming an “inspiration” object, and how mentorship, community, and self-acceptance shape Terri’s life both on and off the racecourse. Key topics Terri introduces herself through her many identities: mom of two teens, wife of a firefighter, immigrant, blind athlete, ultrarunner, and someone newly adapting to hearing loss.She reflects on saying yes to too many leadership roles in the National Federation of the Blind and why she used those titles to fill a gap when she didn’t feel like she had a career.Running becomes her source of peace, structure, and joy, especially because it gives her time away from constant calls, emails, texts, and meetings.Terri explains how she got into running as an adult, starting with a 5K, then a marathon goal, and eventually moving into 100-mile and timed ultra races.She breaks down what ultra running actually looks like for her: planning food, using walk-run strategies, and fueling every 45 minutes.Terri describes how she runs with sighted guides using a nylon tether, plus verbal cues like left, right, and “my way” or “your way.”She shares how her guide dog Trinket is specially trained for running and can handle weekday runs up to about 6 miles.The conversation explores the mental side of endurance, including sleeping during fixed-time races, hitting the wall, and learning when to push through versus when to stop.Terri opens up about the emotional strain of balancing disability, parenting, volunteering, and caregiving, especially as her children become more independent.The hosts and Terri discuss the gap between how a blind person wants to show up and what the environment allows, especially in social situations where seeing and greeting people is harder.Terri reflects on identifying as blind, even with usable vision, and how blindness skills training and the blindness philosophy helped her accept that “blind is blind.”She talks about supporting her daughter, who also has a degenerative eye condition, by exposing her to positive blind role models and programs without pushing too hard.Terri names mentors and “expanders” in both blindness and running, including Joanne Wilson and Pam Allen, and explains how other runners have helped stretch her sense of possibility.The episode closes with Terri discussing a rare OPN1 gene variant that affects her hearing, balance, and nerves, and how she’s adapting through health, nutrition, and movement.

Joy and Jenelle talk with 15-year-old musician and advocate Lyla Eileen, whose five-song EP ups & downs is out today. Her songs come from lived experience, and the conversation covers her early start in music, growing up blind, and the challenges of school and social life, including what it was like having a paraeducator follow her around in middle school. She shares how songwriting became both self-expression and healing. Along the way, they listen to clips from her new music and hear the stories behind the songs. Lyla talks about her influences, including Fousheé, Claire Rosinkranz, and Olivia Rodrigo, and about a new opportunity to consult on audio description at the Seattle Opera House. Listen to ups & downs: Spotify | Apple Music Listen to our interview with the Jeremy Lewis, the founder of EQ Records, who is helping bring Lyla and other's magic to the world! Catch her live: Lyla performs October 10, at the We Are Not Forgotten Showcase in Tacoma, and Joy and Jenelle are thrilled to be there. If you’re in the Washington State region, come say hi! We Are Not Forgotten Showcase Presented by the Alliance for Accessibility and sponsored by the City of Tacoma. Music, poetry, comedy, dance, community, and family, with various artists with disabilities performing and displaying their talents. Date: Saturday, October 10, 2026Location: Star Center, 3873 S 66th St, Tacoma, WA 98409Admission: Free, with a voluntary $10 donation suggestedAccessibility: ASL interpreters and sighted guides will be availableAdditional accommodations: Contact Tony at 206-434-6793 or [email protected] the event: @alliancefor.accessibility on InstagramFollow Lyla Eileen on Instagram

This week, Joy and Jenelle sit down with Jeremy Lewis — financial advisor, entrepreneur, father, and founder of the nonprofit EQ Records. Jeremy lost most of his vision at 17 due to Leber Hereditary Optic Neuropathy (LHON). Over the next 25 years he built a financial practice, Fortitude Financial, the registered investment advisory firm he leads today. Along the way, his love of music and his own experience with disability led him to found EQ Records, a nonprofit recording studio now home to six studios and live-performance spaces in Spokane, WA, dedicated to helping blind, visually impaired, and under-resourced youth thrive through music. Event Info 📍 EQ Records Block Party — September 26th, 4–9 PM, Spokane, WA Live performances, DJ set, food trucks, vendors — free entry, donations welcome. Proceeds support Union Gospel Mission and local wildfire relief.  https://allevents.in/spokane/eq-records-annual-block-party/200030552302624#google_vignette

Joy and Jenelle explore how comparison shapes identity, self-worth, and belonging, especially through the lens of growing up as twins and living with vision loss. They move from childhood memories and a Health Chicago billboard campaign into a broader conversation about how comparison can wound, motivate, or reveal what we value in this episode, Joy and Jenelle talk openly about the ways comparison shows up in families, disability communities, work, creativity, and everyday life. They also reflect on how curiosity, timing, and values can turn comparison into something more useful than self-criticism. Key Topics Joy and Jenelle revisit their brief childhood modeling career for Health Chicago, including the “they like the same boys, they like the same clothes, they like the same food, but they need different doctors” ad.Why twins are so often compared, and how people tend to force them into binaries like “the funny one,” “the smart one,” or “the pretty one.”The familiar phrase “comparison is the thief of joy,” and whether comparison is always harmful or can sometimes be neutral or even helpful.How comparison can point toward values, like humor, writing, creativity, stability, or stamina, instead of just triggering shame.Why scarcity thinking often appears in disability communities, especially when people see others succeeding and assume there is not enough possibility to go around.The “flower” metaphor: tulips, hibiscus, and sunflowers each bloom in their own way and timing, which mirrors how people develop differently.The pressure toward exceptionalism in disability culture, including the feeling that blind people have to be “more than” everyone else just to be valued.How comparison can become a tool for growth when it is paired with pausing, naming the real desire underneath, and asking what is actually being admired.Practical examples from home decorating and creative work, where admiration turned into comparison until values were clarified.Joy’s meeting with Marianne Williamson, who said that no person is more or less important than another, a moment Joy connects to belonging and self-worth.

Joy and Jenelle explore disability joy... the practice of noticing and naming joyful moments that emerge specifically from the disability experience. Sparked by their earlier conversation with Lachi, they dig into a working definition (identity, community, self-acceptance, and self-advocacy) and share personal stories: a sourdough baking day turned into an unexpected bonding moment, a talking birthday card that restored a lost ritual, a bedazzled cane and a walk with a daughter, and finding the words to redirect a well-meaning stranger's help. They also talk about the difference between joy as a fleeting state and joy as a trait you can build over time, and why naming pain matters just as much as naming joy. Connect With Us: Leave a voice message: 949-414-8336 Email: [email protected] Related Episode: Ep. 18: Celebrating Disability Pride Month with Lachi

Joy and Jenelle revisit a blog post they co-wrote about ten years ago: "8 Things We Wish People Would Know About Losing Vision from a Degenerative Eye Condition." The post gained nearly 7,500 views at the time, resonating with family members, friends, and the guide dog puppy-raising community who wanted a better understanding of what vision loss is really like. A decade later, and with both sisters having lost significantly more vision over the past two years, they go through each point together. Jenelle, who works as a psychotherapist supporting clients adjusting to degenerative eye conditions, brings a clinical lens. Joy brings the lived, day-to-day experience. Together they talk about what still holds true, what has shifted, and what they'd add now. Read the blogpost "8 Things I Wish People Knew About Going Blind from a Degenerative Eye Condition" Get in TouchHave thoughts on this episode, or something you feel they missed? Joy and Jenelle want to hear from you. Email: [email protected]: 949-414-8336

Guest host Adam Mock joins Joy Thomas and Jenelle Landgraf for a special 15th anniversary celebration of DoubleVision, the blog they started in 2011 while learning to navigate life with Retinitis Pigmentosa. Together, they reflect on what they thought DoubleVisionBlog might become, what it actually led to, and the unexpected ways fifteen years of storytelling shaped not only their own lives, but the lives of thousands of readers. From favorite blog posts and behind-the-scenes writing stories to surprising analytics, lessons learned from one another, and wisdom rediscovered in essays written nearly fifteen years ago, this conversation is both a celebration and a reflection on a journey that is still unfolding. Posts referenced in this episode: "Eight Things I Wish People Knew About Going Blind from a Degenerative Eye Condition""An Open Letter to…""Grief Gone Wild""Reclaiming Our Lives""Midwinter Break: Musings on Badassery, Vulnerability, and Strength""Why We Hide" Want more? Browse our full library of 327 blog posts spanning over a decade of stories on vision loss, resilience, and everything in between. Special thanks to our dear friend, Adam Mock, for his skillful and human hosting of this special episode. For more info about Adam's work as a Leadership Coaching Specialist and author of "Rescue Your Dreams: A Guidebook to Save the Life You Forgot You Wanted", visit adammock.com.

In honor of Disability Pride Month, Joy and Jenelle welcome Lachi, 2024 USA Today Woman of the Year, award-winning recording artist, Recording Academy National Trustee, CEO of RAMPD, and author of I Identify as Blind. This is a conversation that challenged the way Joy and Jenelle think about disability. Days after recording, they were still processing Lachi’s invitation to consider disability joy. One story Lachi shares from speaking to a room full of disability advocates sparked both internal and external conversations long after the recording ended. In the days that followed, Joy and Jenelle found themselves rethinking daily experiences through the lens of disability joy and even began planning a future episode dedicated to sharing those examples. Lachi invites listeners to rethink disability, not simply as something to accommodate or overcome, but as a culture, an identity, and even a source of joy. She also challenges listeners to explore their own disability identity, arguing that disability is a far broader umbrella than most people realize. Along the way, Lachi breaks down the different ways society understands disability through funny, memorable, and surprisingly easy-to-understand examples, shares her journey from masking her blindness to embracing it publicly, and explains why confidence can transform the way the world responds to disability. Whether you already consider yourself part of the disability community or not, this conversation invites you to explore your own disability identity, rethink what disability pride can mean, and consider where joy fits within your story. In this episode: What disability joy really means and why Lachi calls it an act of resistanceWhy Lachi believes disability is a much broader umbrella than many people realizeA funny, easy-to-understand framework for understanding disabilityHow masking, identity, and self-acceptance shaped Lachi’s journeyWhy community is often the first step toward disability pride and disability joyResources for continuing to learn about disability culture Resources mentioned: I Identify as Blind by LachiRAMPD (Recording Artists and Music Professionals with Disabilities)Glam CanesMagnificent, Lachi’s children’s albumBeing Human by Judy HeumannThe Anti-Ableist Manifesto by Tiffany Yu

This is Part 2 of our conversation with Krishna Washburn, founder and artistic director of Dark Room Ballet. What begins as a conversation about dance becomes a much deeper exploration of memory, identity, belonging, and what it means to be fully seen. Joy and Jenelle talk with Krishna about the importance of trusting our own experiences and perceptions, especially when they don’t fit other people’s assumptions. Along the way, Krishna shares fascinating insights into the world of blind dance education, the rich oral traditions that have preserved knowledge across generations, and the ways art can help us heal, connect, and better understand ourselves. The conversation also takes an honest look at inclusion, challenging listeners to consider who gets welcomed into our communities, workplaces, and cultural spaces, and who is too often left on the margins. Whether you’re interested in dance or not, this episode offers a powerful reflection on the universal human desire to belong, to have our stories honored, and to contribute our gifts to the world. What You’ll Hear in This Episode • Reflections on memory, self-trust, and honoring our lived experiences • The connection between identity, belonging, and the stories we tell ourselves • How blind educators have preserved knowledge through oral tradition and innovative teaching methods • Why dance can be a powerful tool for healing, self-expression, and personal transformation • The emotional impact of being excluded from spaces where you know you belong • What true inclusion looks like, and practical ways we can all help create it • Why accessibility is about more than accommodation and is ultimately a matter of human dignity Guest: Krishna Washburn Krishna Washburn is a ballet educator, audio description specialist, and blind professional dancer. Through Dark Room Ballet, she has trained more than 1,500 dancers and developed tuition-free collegiate and pre-professional arts training opportunities for blind and visually impaired adults. She is also a contributor to the upcoming Oxford Handbook of Ballet Pedagogy. Links & Resources Dark Room Ballet https://darkroomballet.com Double Vision Podcast https://www.doublevisionblog.com Voicemail Line 949-414-8336

This is Part 1 of a two-part conversation recorded in honor of Mental Health Awareness Month. Joy and Jenelle sit down with Krishna Washburn, founder and artistic director of Dark Room Ballet, for a fascinating deep dive into the world of audio description, blind-led arts, and what true accessibility in the performing arts really looks like. What You’ll Hear in This Episode • What audio description is, and why even sighted audience members often end up loving it • Krishna’s story of attending a live performance with audio description and realizing something fundamental was missing • Why audio description designed for television often fails when applied to live dance, and what needs to change • How Pacific Northwest Ballet is doing it right by integrating audio describers as full members of the production team • What to look for, and what to avoid, when buying tickets to an audio described performance • Krishna’s upcoming free 5-week Audio Description course beginning May 30th, open to everyone with no dance background required Guest: Krishna Washburn Krishna is a ballet educator, audio description specialist, and blind professional dancer. Through Dark Room Ballet, she has trained more than 1,500 dancers and developed tuition-free collegiate and pre-professional arts training for blind and visually impaired adults. She is also a contributor to the upcoming Oxford Handbook of Ballet Pedagogy. Links & Resources Dark Room Ballet https://darkroomballet.com Email Dark Room Ballet [email protected] Free 5-Week Audio Description Course https://darkroomballet.com Joy’s “Blind Dance Mom” post Pacific Northwest Ballet https://www.pnb.org Double Vision Blog https://www.doublevisionblog.com Voicemail Line 949-414-8336

Expanding on a conversation Joy and Jenelle began in an earlier episode, “How to Handle Over-Helpers”, they are joined by one of their favorite authors, Rebekah Taussig, for her first appearance on the podcast. Together, they dig into surprisingly similar stories, from growing up with internalized shame around disability to the awkwardness of being prayed for in public to delicately navigating well-meaning people and organizations. Along the way, they unpack the layers inside stories that are sometimes uncomfortable, sometimes funny, and always deeply human. Rebekah Taussig is a writer, speaker, and author of the bestselling memoir Sitting Pretty and We Are the Scrappy Ones. Connect with Rebekah Taussig: InstagramSubstackWebsite

Join us as Dr. Kierstyn Napier-Dovorany, an optometrist specializing in low vision rehabilitation, shares her journey into eye care, her work supporting individuals with vision impairment, and her insights into emerging treatments and clinical trials. With over 20 years of experience, Kierstyn brings a unique perspective as both a practitioner and a clinical researcher. She helps us explore the intersection of lived experience, mobility, and the evolving science of vision care, while also offering practical guidance for navigating resources and opportunities in the field. In this conversation, we dive into topics such as: * Why many people are not hearing about clinical trials from their eye doctors * How to find and evaluate clinical trials * The role of low vision rehabilitation in supporting independence and quality of life * The balance between identity, self-acceptance, and advancements in treatment * How Dr. Kierstyn approaches conversations with individuals who feel strongly connected to their blind identity and may not wish to pursue treatment * What’s on the horizon in research for genetic retinal conditions This episode weaves together science, accessibility, and real-world insight in a way that is both informative and deeply human. Resources Mentioned: * ClinicalTrials.gov: https://clinicaltrials.gov * Foundation Fighting Blindness: https://www.fightingblindness.org * Ray Therapeutics: https://raytherapeutics.com Guest: Dr. Kierstyn Napier-Dovorany is an optometrist who has practiced low vision rehabilitation for twenty years. She is a vision scientist specializing in vision impairment and mobility and currently works as a clinical researcher at Ray Therapeutics, a company developing treatments for genetic retinal diseases.

What would you do if someone offered you a cure tomorrow? For Joy and Jenelle, that question is anything but simple. In this episode, they explore the deeply personal tension between accepting who you are and wanting something more, unpacking cure culture, disability identity, and the vulnerability that comes with allowing yourself to hope. Plus, a sneak peek at their upcoming conversation with Dr. Kirstyn Dovorany.

We've all been there — someone swoops in to help before you've even asked, grabs something out of your hands, or insists on doing something for you when you were handling it just fine. It's well-meaning. It can also be exhausting. In this episode, Jenelle and Joy get into the messy, nuanced world of helping — when it's welcome, when it crosses a line, and how to handle it when it does. Drawing from their own lived experiences as people with disabilities, they unpack why our culture tends to put helpers on a pedestal, and what gets lost when the focus shifts from the person being helped to the person doing the helping. In this episode: Why everyone needs help sometimes — and why that's not a disability thing, it's a human thingHow apps like Be My Eyes flip the script on what "helping" can look like when it's actually mutualThe difference between helping someone and taking over for them (and why that distinction matters)Unsolicited touching, moved belongings, and other "helpful" behaviors that can feel anything butWhere the fear of being a burden comes from — and why it's worth examiningThe gap between good intentions and real impact, and how to have the repair conversation when harm happensPractical ways to set boundaries without feeling like you have to justify yourselfWhat it actually means to see someone as a whole person — not just their disability If you've ever struggled to speak up when help crosses a line, or wondered how to offer support without overstepping, this one's for you. Resources: "How to Handle Overhelpers" on DoubleVisionBlog

Blind and unemployed is still the statistical norm in America. So what actually changes that? In this episode, we talk about the advocacy skills most blind and low-vision people are never formally taught, and why storytelling often moves policy faster than data ever could. We unpack the persistent employment gap, the power of learning how to speak your lived experience in professional spaces, and how programs like ASPECT are equipping blind advocates to influence real change. Joined by Janetta Price and Julie Grutzmacher from Prevent Blindness, the conversation explores the history behind the name, the tension between statistics and human stories, and what it takes to shift public perception. If you care about employment, equity, or learning how to advocate more effectively for yourself or others, this episode gets practical and personal. We close with a powerful spoken word piece from Janetta Price that reminds us why voice matters. For more info on the ASPECT program visit the Prevent Blindness website and their YouTube Channel.