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"My kid is nothing like me."It's a thought many parents have—but rarely say out loud. We all carry quiet expectations that our kids will reflect us in some way: our values, our temperament, maybe even our path.So what happens when they don't?Dr. Becky sits down with Dr. Andrew Solomon, author of Far from the Tree, to explore what it brings up for us when our kids are different from us—and how acceptance and curiosity can help us grow while deepening our connection with them.Today's episode is also brought to you by Sittercity. We talk a lot about support at Good Inside—emotional support, community, not having to figure out parenting on your own. Sometimes, you also need logistical support. Like, someone to watch your kid so you can make that meeting, run those errands, or finally catch up with a friend. That's where Sittercity can be a really helpful tool. Their platform gives you a trusted way to find sitters who are kind, experienced, and show up when you need them. You can read reviews from other parents, message sitters directly, and set up interviews—all in one spot. If you've been meaning to find a sitter but didn't know where to begin, this is going to make it feel a whole lot easier. Go to Sittercity.com and use the code “goodinside" for 25% off the annual or quarterly premium subscription plans.Today's episode is also brought to you by Great Wolf Lodge. As a mom of three kids, I'm always on the lookout for family adventures that offer something for everyone (including myself!). That's why Great Wolf Lodge is high on our list of future destinations! They offer a world of fun, all under one roof, including water slides, a lazy river, a massive wave pool, arcade games, mini golf and nightly dance parties! With 23 locations all across North America, and more on the way, chances are there's a Great Wolf Lodge just a short drive away from you. You can save up to 40% off on any stay at Great Wolf Lodge from now through August 31st when you book at participating lodges. Just visit GreatWolf.com and enter the promo code “GoodInside” – when you book.
In this episode I take an exhaustive look at the diverse perspectives of depression, that pervasive mood disorder that afflicts far too many people. I explore its gradual onset and chronic, often life-long course, and highlight the overwhelming features of depression, from low mood and poor appetite to poor sleep and loss of interest in pleasurable activities. I also explore the less appreciated dimension of the pain of depression.I illustrate the lived experience of depression with such fascinating patient accounts as that of Sally Brampton titled Shoot the Damned Dog, of Lewis Wolpert titled Malignant Sadness, of Andrew Solomon titled The Noonday Demon, and of William Styron titled Darkness Visible. Significantly, the memoirs stress the difficulty people have in recognising that their low mood has crossed the threshold into depression.The interplay of familial and environmental risk factors of depression is also a major theme of the podcast which emphasised such critical provoking life events as divorce and loss of income. I also discussed the risk of suicide that may complicate depression, a theme that I explored by relying on the book When It is Darkest by psychologist and suicide expert Rory O'Connor.I also discuss the different treatment modalities of depression, from antidepressants and psychotherapy to somatic therapy, the long road to recovery, and the ever-present risk of treatment resistance and relapse. Other themes the podcast covers are the shame and stigma that accompany depression.The historical themes of the podcast highlight the insights of Abu Zayd Al Balkhi in depression and cognitive behaviour therapy, that roles played by Sigmund Freud and Joseph Breuer in establishing psychoanalysis, and that of Nathan Kline in the development of the first antidepressant.
Guest: Andrew J. Solomon, MD Accurately diagnosing multiple sclerosis (MS) involves understanding the diagnostic criteria, recognizing red flags to avoid misdiagnosis, and keeping up with new tools. Dr. Andrew Solomon, Professor and Interim Chair of the Department of Neurological Sciences and Chief of the Multiple Sclerosis Division at the University of Vermont, walks through the most difficult aspects of diagnosing patients with MS and potential breakthroughs reshaping how we approach these challenges. Dr. Solomon also spoke about this topic at the 2025 American Academy of Neurology Annual Meeting.
Guest: Andrew J. Solomon, MD Accurately diagnosing multiple sclerosis (MS) involves understanding the diagnostic criteria, recognizing red flags to avoid misdiagnosis, and keeping up with new tools. Dr. Andrew Solomon, Professor and Interim Chair of the Department of Neurological Sciences and Chief of the Multiple Sclerosis Division at the University of Vermont, walks through the most difficult aspects of diagnosing patients with MS and potential breakthroughs reshaping how we approach these challenges. Dr. Solomon also spoke about this topic at the 2025 American Academy of Neurology Annual Meeting.
Notes and Links to Donna Minkowitz's Work Donna Minkowitz is a writer of fiction and memoir who author Mary Gaitskill has celebrated as “original, energetic, witty, and meaty.” Andrew Solomon dubbed her “utterly entrancing… a writer with breathtakingly fluent language.” She is also the author of the fantasy-influenced memoir Growing Up Golem and the memoir Ferocious Romance, about being an openly lesbian reporter covering the Christian right undercover. Growing Up Golem was a finalist for both a Lambda Literary Award and for the Publishing Triangle's Judy Grahn Nonfiction Award, and Ferocious Romance won a Lambda Literary Award. Donna, a former columnist for the Village Voice and The Advocate, has also written for the New York Times Book Review, The Nation, Salon, Slate, and New York magazine. DONNAVILLE, her first novel and third book, was recently published by Indolent Books. Buy Donnaville Donna's Website Book Review for Donnaville from Kirkus Reviews At about 2:05, Donna provides background on her formative reading and writing years At about 3:40, Pete and Donna talk about the benefits of reading works a bit too old for them At about 5:05, Donna responds to Pete's questions about the Torah and how its stories affected her writing At about 6:30, Donna talks about formative and transformative writers, including poets and Greek mythology At about 8:05, Donna responds to Pete's questions about representation in discussing the significance of Sappho's work At about 10:25, Donna discusses the nuances of the word “queer” and generational usages At about 14:00, Pete and Donna stan Honor Thy Father by Gay Talese, which receives a shout out in Donnaville At about 17:20, Donna expands on writers who inspired her as a high school and college student; she talks about the complicated legacy and work of Tolkien At about 21:30, Pete asks Donna and how the detail shown in Donnaville connects to her work as an esteemed journalist At about 23:40, Donna talks about her undercover journalism work, including a memorable white nationalism conference and purported former Olympic hopeful At about 26:40, Donna talks about the book's opening scene and connections to her real life, with regard to therapy and therapists and ways of finding growth At about 31:55, Pete describes the book's exposition and compliments Donna's At about 34:05, Donna cites Denise Levertov's and Delmore Schwartz's (“Narcissus”) work as inspiration for her book featuring a city inside her mind; Pete cites another wonderful Schwartz text, “In Dreams Begin Responsibilities” At about 36:40, Donna talks about Foucault and resistance in connection to an evocative line from her book At about 37:20, Donna expands upon how there are two characters in the book who are not pieces of her, and she explains the significance of Harlequin in the book At about 41:45, Donna responds to Pete's question about the lying nature of Harlequin At about 44:15, Donna and Pete explore ideas of connection and confusion between abusers and their young victims At about 47:50, Donna talks about early “action” that Donna in the book is urged to take At about 49:40, Pete highlights a beautiful quote regarding the “sacred divine” and Donna talks about expectations of hurt At about 50:30, The two discuss the contradictions of the book's jailer, and Donna further discusses ideas of shame At about 53:25, Donna expands on how she sees parts of her life and family in certain characters in the book At about 54:40, Pete shouts out a story, William Carlos Willams' “The Use of Force,” that explores ideas of sadism in similar ways as Donnaville At about 55:50, Donna muses over ideas of self-care, emotional regulation, and structure in our lives featured in the book At about 57:35, Pete gives details about the book's main focus, and Donna responds to his observations about Donnaville as “a happily queer book” as she also expands upon pleasures found in the book At about 1:02:05, Pete cites traumas alluded to in the book and a deep quote about traumas emerging in people's lives At about 1:04:10, Donna ponders Pete's question about a nurturing group of older people and connects the book to Joseph Campbell's “Hero's Journey” At about 1:07:30, Pete and Donna discuss a possible animated movie based on the book and possible voice actors At about 1:09:25, Donna shouts out as bookstores to buy her book, such as The Bureau of General Services, Queer Division, Stanza Books and Binnacle Books You can now subscribe to the podcast on Apple Podcasts, and leave me a five-star review. You can also ask for the podcast by name using Alexa, and find the pod on Stitcher, Spotify, and on Amazon Music. Follow Pete on IG, where he is @chillsatwillpodcast, or on Twitter, where he is @chillsatwillpo1. You can watch other episodes on YouTube-watch and subscribe to The Chills at Will Podcast Channel. Please subscribe to both the YouTube Channel and the podcast while you're checking out this episode. Pete is very excited to have one or two podcast episodes per month featured on the website of Chicago Review of Books. The audio will be posted, along with a written interview culled from the audio. This week, his conversation with Episode 255 guest Chris Knapp is up on the website. A big thanks to Rachel León and Michael Welch at Chicago Review. Sign up now for The Chills at Will Podcast Patreon: it can be found at patreon.com/chillsatwillpodcastpeterriehl Check out the page that describes the benefits of a Patreon membership, including cool swag and bonus episodes. Thanks in advance for supporting Pete's one-man show, his DIY podcast and his extensive reading, research, editing, and promoting to keep this independent podcast pumping out high-quality content! This month's Patreon bonus episode will feature an exploration of the wonderful poetry of Khalil Gibran. I have added a $1 a month tier for “Well-Wishers” and Cheerleaders of the Show. This is a passion project of Pete's, a DIY operation, and he'd love for your help in promoting what he's convinced is a unique and spirited look at an often-ignored art form. The intro song for The Chills at Will Podcast is “Wind Down” (Instrumental Version), and the other song played on this episode was “Hoops” (Instrumental)” by Matt Weidauer, and both songs are used through ArchesAudio.com. Please tune in for Episode 277 with Jahmal Mayfield, who writes gritty crime novels that touch on large social issues. His stellar SMOKE KINGS was inspired by Kimberly Jones' passionate viral video, “How can we win?” The episode airs on March 25.
Ever wondered what keeps two people together when the days are intense and the answers aren't clear? Kelly talks with Bob and Amy Allnutt about raising their son Jack, who is severely autistic. These two figured out something pretty special about making a marriage work - it's not about seeing eye to eye, but about creating room for different ways of handling things. When they finally found a way for Jack to communicate by typing, he told them something they'll never forget: "I'm trying and I'm really smart." Bob and Amy get real about the hard stuff - the violent episodes, the exhaustion, and what happens when you stop trying to be right and start trying to understand. It's a conversation that'll make you think differently about what it means to have someone's back. This episode was made possible by a grant from Templeton Religion Trust. To learn more, go to templetonreligiontrust.org. For more information on Bob, Amy and Jack Allnutt, check out Andrew Solomon's excellent book Far From the Tree: Parents, Children and the Search for Identity or the fantastic documentary Far From the Tree (based on the book). To learn more about listener data and our privacy practices visit: https://www.audacyinc.com/privacy-policy Learn more about your ad choices. Visit https://podcastchoices.com/adchoices
Från 2021. En brutal attack på lågstadiebarn i Connecticut ger ny glöd i den återkommande debatten om USA:s vapenlagar. Men den här gången sprids också konspirationsteorier om att dådet bara är fejk. Nya avsnitt från P3 Dokumentär hittar du först i Sveriges Radio Play. Det är fredag morgon, strax innan jul 2012, och barnen bakar pepparkakshus. Biträdande rektor Natalie Hammond ska just påbörja ett möte när hon hör ett konstigt ljud. Någon skjuter i skolan Sandy Hook Elementary.Händelsen leder till debatt om vapenlagar i USAEn 20-årig kille, beväpnad med ett halvautomatiskt gevär och hundratals patroner, inleder en massaker. Händelsen chockar en hel nation och USA:s debatt om vapenkontroller blossar upp, som så många gånger tidigare. President Barack Obama står bakom ett nytt lagförslag som ska begränsa tillgången på vissa automatvapen.Mitt i allt detta sprids rykten, från bland andra talkshow-stjärnan Alex Jones, om att det blodiga dådet i själva verket är en false flag – iscensatt med skådespelare av den amerikanska staten.Medverkande:Daniel Jewiss, Senior Detective.Michelle Gay, mamma till Josephine.David Wheeler, pappa till Ben.Natalie Hammond, biträdande rektor.Andrew Solomon, författare.Ginna Lindberg, SR-korrespondent.En dokumentär av: Karolin Axelsson.Producent: Jon Jordås.Dokumentären publicerades för första gången 2021.
A warning to listeners: The following conversation references suicide, suicidality, and content that is inappropriate for young listeners. Even before the pandemic, there was an increasing awareness of the decline in mental health of children and young adults. Researchers and scientists have talked and written about rising levels of anxiety in today’s youth, and many have pointed to the pervasiveness of smartphones and social media, which have exponentially magnified concerns for the mental well being of a generation. Andrew Solomon, writer and professor of clinical psychology at Columbia University Medical Center, recently penned an article for The New Yorker titled “Has Social Media Fuelled a Teen-Suicide Crisis? ” In his piece, Soloman investigates what’s fuelling the the spike in suicide among Americans between the ages of ten and twenty-four. Quoting the work of Dr. Judith Edersheim at Harvard, Solomon says: “It’s like taking little children and putting them in an all night casino where they serve chocolate flavored bourbon. It's designed to be addictive, it is addictive and that addiction has devastating consequences.” Solomon interviews dozens of parents and shares the poignant and heart wrenching accounts of how so many of them were totally unaware of the online world in which their children were living. As one father who had lost his son to suicide explained to Solomon, “I was, I thought, such a good father. I checked around the house every night. I locked the doors. I made sure my children were safe. I didn't know that the lion was already inside the house.” Solomon further explains that this all has so much to do with the insidious nature of the algorithms, which feed not on vulnerabilities, but bring about a sense of normalization. If a kid looks at content about being a little depressed, Solomon tells us that “then they start showing you people who are more depressed. “They want to hook you,” he continues, “what they send you has to gradually become more extreme and eventually you escalate to people who are killing themselves on camera and posting it on social media platforms while they are doing it.” Parents, educators and lawmakers are working hard to bring attention to this; some argue that social media is only “only one layer” in the crisis. Lawsuits have made their way to the Supreme Court but so far, Solomon informs us: “The Supreme Court has refused to overturn Section 230. The legislative work that was supposed to have an effect on placing constraints on the operations of social media companies, have all got stuck in committee, despite the ‘bipartisan agreement that there need to be restraints.’” Solomon advises parents to educate themselves and talk to their kids, though inevitably the younger generation who has grown up with technology is going to be ahead of the game. “The idea of being able to monitor all of what your children are doing is a ludicrous fantasy,” Solomon admits. “So I think that's all not very effective, but you can at least be aware and talk to your children.” Delve deeper into life, philosophy, and what makes us human by joining the Life Examined discussion group on Facebook.
What does it take to transform from a young person with a bit of ego to a powerful, inspiring leader? On this episode of the Leaders of Tomorrow podcast, Chris speaks with Andrew Solomon, an exceptional young leader who has been through Student Works as both a top operator and a coach, and now runs an $8 million division of Rydel Roofing. Andrew shares how his experiences at Student Works shifted his focus from himself to the people around him—and how that change fueled his success.Andrew discusses the value of integrity, accountability, and how showing up with consistency has been crucial in his journey from a young operator to a thriving business leader. Listeners will hear how Andrew made critical personal and professional transformations, dealt with major setbacks, and ultimately built a high-performing business by putting his people first.Curious about the importance of “leading yourself first” or how a personal vision can empower a whole team to achieve beyond expectations? Andrew reveals the mindset and actions needed to create not just a successful business but also a life full of purpose and fulfillment. Listen now and enjoy!In This Episode You'll Learn:A leader's main role is to create hope and a vision for a better futureSuccess comes from putting people first, not focusing on your own egoThe importance of integrity and how it affects leadership in both business and personal lifeHow the right mindset can turn failures into stepping stones for growthThe challenges and triumphs of transitioning from Student Works to a larger-scale businessThe value of focusing on trajectory over current position for long-term successPersonal practices that can improve leadership effectivenessAnd much more…Resources:Student Works
Here at the California Science Center in our Ecosystems gallery lies our kelp forest, holding 188,000-gallon tank with over 800 species! This kelp forest represents the type of ecosystem that you will find off the California coast and who better to help bring this kelp forest to life than our divers! Do you ever wonder what divers do at the California Science Center? In this episode we chat with the Marine Operations Manager, Andrew Solomon, who gives us an insight on how the dive teams not only help in bringing to life the kelp forest but also how they work together with other departments to maintain them. Andrew also gives us an idea on what it takes to be a diver and the risks that come with diving. Have a question you've been wondering about? Send an email or voice recording to everwonder@californiasciencecenter.org to tell us what you'd like to hear in future episodes.Follow us on Twitter (@casciencecenter), Instagram (@californiasciencecenter), and Facebook (@californiasciencecenter).Support the show
(00:00) Organising books that you don't read anymore(08:24) Jess' stay at the Writers' Residency in Bowral (14:30) Love Unleashed: Melanie Saward(17:14) Far from the tree: Andrew Solomon joy and the unique feeling of having kids(30:55) Blink Twice, mystery thriller and the fear of aging (40:40) Tokyo Swindler Asian Bitches Down Under featured as one of the Top 20 Intersectional Feminist Podcast by FeedSpot, listen to other amazing podcast programs HERE Facebook | Asian Bitches Down UnderInstagram | Asian Bitches Down Under Buy Me A Coffee | Asian Bitches Down Under
Today we are very fortunate to get an opportunity to talk to bestselling author Andrew Solomon, writer and lecturer on psychology, politics, and the arts and winner of the National Book Award for The Noonday Demon: An Atlas of Depression. He is an activist in LGBT rights, mental health, and the arts. His latest NY Times bestselling book, and the subject of our interview today, entitled Far from the Tree: Parents, Children and the Search for Identity, is also the winner of several awards, including being chosen at among the NY Times Ten Best Books of 2012. It has been called “A bold and unambiguous call to redefine how we view difference… A stunning work of scholarship and compassion (Carmela Ciuraru, USA Today) distinguished similarly by many other notables for its exceptional profundity, compassion and insight. Today we are going to take an intimate look at this entire concept of loving differentness. Don't miss this unique opportunity to gain insight into the power of love.
Our initial Everything Conference 2024 series comes to a conclusion with a conversation with the one and only Ned Andrew Solomon. The post ETC Series, Ep. 16 – A Lifetime of Changes, Surprises and Pivots with Ned Andrew Solomon appeared first on The Puttyverse.
In this episode of Raising Joy, we celebrate diversity and inclusion at Cook Children's with Jacob Hall and Tara Drake, co-leaders of the PRIDE+ Employee Resource Group (ERG). The PRIDE+ ERG fosters a supportive community for LGBTQ+ employees and allies at Cook Children's. We'll discuss the importance of ERGs in the workplace, the initiatives of the PRIDE+ ERG, and how Cook Children's is creating an inclusive environment for all.Join us as we learn about:The mission and goals of the PRIDE+ ERGThe benefits of ERGs for both employees and employersHow Cook Children's is supporting LGBTQ+ employeesWays to get involved with the PRIDE+ ERG and promote inclusion in the workplaceThis episode is a must-listen for anyone who wants to learn more about creating a diverse and inclusive workplace culture.
This episode of Raising Joy tackles a tough but crucial topic: youth suicide prevention, particularly among young people of color. Kristen Pyrc, M.D. welcomes Martha and Chris Thomas, founders of The Defensive Line, a nonprofit on a mission to end this epidemic.Martha and Chris tragically lost their daughter, Ella Elizabeth Thomas, to suicide at the age of 24. Inspired by Ella's vibrant spirit and the need for change, The Defensive Line is transforming how we communicate and connect about mental health.Join us for a powerful conversation about:Breaking the stigma around mental health in communities of colorEffective communication strategies to support young peopleBuilding a world where mental health resources are accessible and inclusiveThis episode is a must-listen for anyone who wants to empower themselves and others to have open conversations about mental health and create a future filled with hope.Learn more about The Defensive Line here: https://thedefensiveline.org/
In this episode of Raising Joy, we explore the incredible resource of MHMR and Help Me Grow North Texas. Miranda Holmes & Arrenia Thomas join us to discuss how Help Me Grow empowers parents and caregivers by connecting them with a network of specialists and community-based services to support their child's healthy development.We delve into:Who Help Me Grow North Texas can supportThe different types of resources and services availableHow the program can address both general parenting questions and developmental concernsThe benefits of collaboration across various sectorsAnd much more!This episode is a must-listen for any parent or caregiver seeking guidance and support in raising joyful, thriving children.
In this episode, we explore the unique educational environment of Jane Justin School at Cook Children's Child Study Center.Our guest, Tracie Mann, Ph.D., LBA, shares how Jane Justin School supports children aged 3-21 with developmental and learning disabilities.We'll delve into the school's philosophy, which emphasizes individualized instruction, small class sizes, and a focus on mastering skills. If you're interested in learning more about how Jane Justin School empowers students with complex needs to achieve their full potential, this episode is for you!Learn more about the Jane Justin School here: https://www.cookchildrens.org/services/child-study-center/jane-justin-school/
Warning: This episode includes conversation about youth self-harm and suicide. Recent news of suicides among teens in North Texas has sent shockwaves through our community. Raising Joy hosts Kristen Pyrc, M.D., and Wini King take a moment to acknowledge the heartbreak being felt by so many and to share resources for healing. Help is available.If you or someone you know is struggling, speak with someone today by calling 988 or visiting 988lifeline.org.Available 24 hours. Languages: English, Spanish. Additional resources: Mental Health America of Greater Tarrant Countyhttps://mhatc.org/loss-team/ GriefShareFind a Group - GriefShare Survivors of SuicideSuicide Loss Support Groups | Alliance of Hope The WARM Place
In this episode of Raising Joy, we delve into the critical issue of physician burnout with Kirk Pinto, M.D., a pediatric urologist, and Sara Garza, M.D., a primary care physician. These leaders in physician well-being at Cook Children's join us to shed light on this growing concern.We'll explore the signs and symptoms of burnout, its impact on doctors, families, and patient care, and most importantly, strategies for prevention and management. Drs. Pinto and Garza will share practical self-care tips, the role of health care institutions in fostering well-being, and resources available to physicians struggling with burnout.Whether you're a parent supporting a future doctor or a health care professional yourself, this episode offers valuable insights and hope for creating a more sustainable and fulfilling medical career.
In this episode of Raising Joy, we delve into a topic close to many parents' hearts: the mental health of children with complex medical needs. Our expert guests are Carla Morton, Ph.D., and Marsha Gabriel, Ph.D., neuropsychologists from Cook Children's. We'll explore:· What is neuropsychology and how does it relate to children's health?· Common complex medical conditions and associated mental health challenges.· Warning signs parents should watch for in their children.· Practical strategies parents can use to support their children's mental well-being at home.· The range of emotions parents of children with complex medical needs may experience.· Dr. Morton's personal experience as a parent of a child with special needs.· Things parents might not realize about raising a child with complex medical needs.
This episode of Raising Joy dives into the unseen but crucial work of building a strong and resilient community for children and families. Hosts Wini King and Dr. Kristen Pyrc welcome Breanna Anderson and Jammie Josephson, managers of the ACE's Team at the Center for Community Health at Cook Children's.The conversation explores:· Understanding ACES: They'll break down what Adverse Childhood Experiences (ACES) are and their impact on children's health.· The ACE's Team in Action: Learn about the team's mission and the programs they offer to support parents and families.· Building Hope: Breanna and Jammie will share a success story that highlights the positive impact of their work.· The Power of Community Outreach: Discover why taking these resources directly into communities is essential for building resilience.
This episode of Raising Joy saddles up for an inspiring conversation about mental health with Hallie Sheade, Ph.D., LPC-S, RPT-S, Executive Director of S.T.E.P.S. With Horses. Dr. Sheade, a licensed professional counselor who incorporates horses into her therapy sessions, will reveal the surprising power of these majestic creatures to help people and kids open up, learn, and heal in ways traditional talk therapy sometimes can't. Join us as we explore the unique benefits of equine-assisted services and discover how horses can become powerful partners on the path to mental well-being.Learn more here: https://www.stepswithhorses.org/
This episode of Raising Joy tackles a tough but crucial topic: child sex trafficking. Our guest, Stacey Henley, a child abuse expert from Cook Children's C.A.R.E. team, offers a powerful perspective. Stacey sheds light on the realities of child victimization, but also empowers parents with knowledge. Join us for this important conversation and learn how we can all work together to create a safer environment for our children.
What kind of impact can a single pair of shoes have on a child's life? According to Sam Sayed, a medical student at the TCU Burnett School of Medicine, the impact can be life-altering. At least this was the case for his own life. On this special episode of Raising Joy, Sam talks to us about his nonprofit, Dayna's Footprints, which he started with his brother Sharif Sayed. Their mission is, “To combat learning inequity by providing students shoes to wear proudly, subsequently increasing students' self-esteem and enthusiasm for attending school.”Sam tells shares his story of growing up underprivileged in Arlington, Texas, and how a pair of shoes gifted by his sister Dayna changed the trajectory of the brothers' lives. Watch their TedX talk: https://www.ted.com/talks/sam_sharif_sayed_a_day_in_their_shoes/transcript ABC News Story:https://abcnews.go.com/US/texas-medical-student-back-community-free-shoes-nonprofit/story?id=105805418
World Down Syndrome Day is March 21, 2024. Join us for an uplifting conversation with Alexis Pechek and Ileana Hamilton, two parents whose lives have been enriched by their children with Down syndrome. They'll share their honest journeys - from navigating the initial diagnosis to the beautiful ways their families have grown. This episode is a beacon of hope for any parent facing a new Down syndrome diagnosis, reminding us of the profound joy these incredible children bring to the world.
Life with a furry friend brings countless moments of joy, but for children, the loss of a beloved pet can be an incredibly difficult experience. This Raising Joy episode tackles this sensitive topic with empathy and guidance, featuring Laura Sonefeld from Cook Children's Sit…Stay...PLAY! program.Join us as Laura, a certified child life specialist and Cook Children's facility dog program coordinator, shares her expertise on how to help children navigate the emotions of pet loss.
Having a child in a neonatal intensive care unit (NICU) can be a traumatic experience. On this episode of Raising Joy, we're joined by Helen Thomas, LCSW, PMH-C. Helen is a clinical therapist and licensed social worker specializing in perinatal mental health. She shares invaluable insights into the challenges NICU parents face, offering support and understanding for those navigating this unique journey. This episode emphasizes the importance of mental well-being for both parents and their newborns.
Join me this week for an enlightening discussion with Priscilla Gilman, acclaimed author of the upcoming paperback release of her critically acclaimed memoir, The Critic's Daughter. Priscilla, a former professor of English literature at Yale and Vassar, brings a wealth of insight as we explore the intricacies of co-parenting and divorce. Beyond her literary achievements, Priscilla is one of my oldest friends, which adds a personal touch to our conversation. The Critic's Daughter becomes a guide on what not to do when faced with the complexities of divorce, providing a personal and poignant account of Priscilla's experiences. It's a rare opportunity to glimpse into my childhood, too, and witness the powerful narrative of Priscilla's parents' divorce – a tale of resilience, hardship, and the mistakes made during an era when people simply didn't know how to get divorced without deeply affecting their children. Learn more about Priscilla Gilman: Priscilla Gilman is a former professor of English literature at both Yale University and Vassar College and the author of The Anti-Romantic Child: A Story of Unexpected Joy (Harper), and The Critic's Daughter (Norton). The Anti-Romantic Child was excerpted in Newsweek magazine and featured on the cover of its international edition. It received starred reviews in Publishers Weekly and Booklist, was an NPR Morning Edition Must-Read, Slate‘s Book of the Week, one of the year's Best Books for the Leonard Lopate Show and The Chicago Tribune, and one of five nominees for a Books for a Better Life Award for Best First Book. Andrew Solomon called it “rapturously beautiful and deeply moving, profound, and marvelous.” Gilman's second book, The Critic's Daughter, was published by W.W. Norton in February 2023 (paperback February 2024); a memoir about her relationship with her brilliant and complicated father, the late drama and literary critic Richard Gilman, it is set in the heyday of intellectual culture in New York of the 1970s and 80s. The Critic's Daughter received starred reviews in Kirkus and Booklist; Nick Hornby called it “Beautiful: honest, raw, careful, soulful, brave and incredibly readable.” It was a Washington Post Best Book of 2023, a New York Times Book Critics' Favorite Book of 2023, one of the Los Angeles Times' book critic and Book Maven Bethanne Patrick's Top 10 Non-Fiction Books of 2023, one of the "18 Books Lilith magazine Loved in 2023," and 3rd on Bookreporter's Harvey Freedenburg's Favorite Books of 2023. Since 2011, Gilman has taught literature and writing in countless settings. She was the parenting/education advice columnist for #1 New York Times bestselling author Susan Cain's Quiet Revolution website. She speaks frequently at schools, conferences, and organizations about parenting, education, autism, and the arts. In 2018, she became a certified Mindfulness and Loving-Kindness meditation teacher. Resources & Links: Kate's book “The D Word Phoenix Rising: A Divorce Empowerment Collective Priscilla's websiteThe Critic's DaughterPriscilla on InstagramPriscilla on Facebook Episode Link: https://kateanthony.com/podcast/episode-251-reflections-on-the-critics-daughter-with-priscilla-gilman/ TODAY'S EPISODE IS SPONSORED BY: PRIMIS BANK Get started navigating your new financial picture with Primis Bank. For terms and conditions, visit primisbank.com/dsg. DISCLAIMER: THE COMMENTARY AND OPINIONS AVAILABLE ON THIS PODCAST ARE FOR INFORMATIONAL AND ENTERTAINMENT PURPOSES ONLY AND NOT FOR THE PURPOSE OF PROVIDING LEGAL OR PSYCHOLOGICAL ADVICE. YOU SHOULD CONTACT AN ATTORNEY, COACH, OR THERAPIST IN YOUR STATE TO OBTAIN ADVICE WITH RESPECT TO ANY PARTICULAR ISSUE OR PROBLEM.
In this heartwarming episode of Raising Joy, we meet Raymond Turner, the studio producer of Sparklefly Recording Studio in the Child Life Zone at Cook Children's. Raymond's story is one of resilience, compassion, and the transformative power of music.Join us as Raymond shares his inspiring journey to Cook Children's, where he found his calling in creating music for some of the hospital's youngest patients. We'll delve into the deeply moving experience of crafting heartbeat songs memorializing terminal children for their families, a testament to Raymond's unwavering dedication to bringing joy and solace during the most challenging times.Raymond's story is a reminder that even in the face of adversity, there is always room for hope, healing, and the power of human connection. His work at Cook Children's is a beacon of light, touching the lives of countless families and leaving a mark on their hearts forever.Raymond also gave a TedX Talk in the spring of 2023. You can watch his talk here: https://www.youtube.com/watch?v=MFLwwUj7gHg
When we think of the holidays, most of us think of good food, family gatherings and beautiful holiday decorations. For many, it's the happiest time of the year; but for others it's a very different story. The holiday season can be a difficult time for many, especially those grieving the death of a loved one. On this episode of the Raising Joy podcast, we're joined by Hannah Boyd, CCLS, a child life specialist, and Jennifer Hayes, MDiv, BCC, Director of Spiritual Care at Cook Children's. They share their insights on how parents can talk to children and navigate grief as a family during a time of the year that is supposed to be full of joy.
As I have always told our guests, our time together is a conversation, not an interview. This was never truer than with our guest this time, Andrew Leland. Andrew grew up with what most people would call a pretty normal childhood. However, as he discovered he was encountering night blindness that gradually grew worse. Back in the 1980s and early 90s, he was not getting much support for determining what was happening with his eyes. He did his own research and decided that he was experiencing retinitis pigmentosa, a degenerative eye disease that first affects peripheral vision and eventually leads to total blindness. I won't spend time discussing Andrew's journey toward how finally doctors verified his personal diagnosis. Andrew was and is an incredible researcher and thinker. He comes by it naturally. In addition, he is quite a writer and has had material published by The New York Times Magazine, The New Yorker, McSweeney's Quarterly, and The San Francisco Chronicle, among other outlets. He comes by his talents honestly through family members who have been screenwriters and playwrights. Example? His grandfather was Marvin Neal Simon, better known to all of us as Neal Simon. This year Andrew's first book was published. It is entitled, The Country of the Blind: A Memoir at the End of Sight. I urge you to get and read it. Our conversation goes into detail about blindness in so many different ways. I am sure you will find that your own views of blindness will probably change as you hear our discussion. Andrew has already agreed to come on again so we can continue our discussions. I hope you enjoy our time together. About the Guest: Andrew Leland's first book is The Country of the Blind: A Memoir at the End of Sight. His_ writing has appeared in _The New York Times Magazine, The New Yorker, McSweeney's Quarterly, and The San Francisco Chronicle, among other outlets. From 2013-2019, he hosted and produced The Organist, an arts and culture podcast, for KCRW; he has also produced pieces for Radiolab and 99 Percent Invisible. He has been an editor at The Believer since 2003. He lives in western Massachusetts with his wife and son. Ways to connect with Andrew: Website: https://www.andrewleland.org/ About the Host: Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog. Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children's Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association's 2012 Hero Dog Awards. https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/ accessiBe Links https://accessibe.com/ https://www.youtube.com/c/accessiBe https://www.linkedin.com/company/accessibe/mycompany/ https://www.facebook.com/accessibe/ Thanks for listening! Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below! Subscribe to the podcast If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can also subscribe in your favorite podcast app. Leave us an Apple Podcasts review Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts. Transcription Notes Michael Hingson ** 00:00 Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I'm Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that's a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we're happy to meet you and to have you here with us. Michael Hingson ** 01:21 Welcome to another episode of unstoppable mindset where inclusion diversity in the unexpected meet. And we're gonna get to have a little bit of all of that today. I get to interview someone who I've talked to a couple of times and met a couple of months ago for the first time, I think the first time at a meeting, Andrew Leland is the author of the country of the blind. And he will tell us about that. And we will have lots of fun things to talk about. I am sure he's been a podcaster. He's an author. Needless to say, he's written things. And I don't know what else we'll see what other kinds of secrets we can uncover. Fair warning, right. So Andrew, welcome to unstoppable mindset. Andrew Leland ** 02:01 Thank you. Thank you so much for having me. I'm happy to be here. Michael Hingson ** 02:04 Well, I really appreciate you coming. Why don't you start by telling us a little about kind of the early Andrew growing up in some of that kind of stuff? Oh, sure. A lot of times go in a galaxy far, far away. Yeah. Right. Andrew Leland ** 02:18 planet called the Los Angeles. I was born in LA. Yeah. And my parents moved to New York pretty quickly. And they split when I was two. So for most of my childhood, I was kind of bouncing in between, I live with my mom. But then I would go visit my dad on holidays. And my mom moved around a lot. So we were in New York, just outside the city. And then we moved to Toronto for two years, and then back to New York, and then to Santa Fe, New Mexico, and then to California, Southern California. So I lived a lot of places. And that was all before college. And yeah, what can I tell you about young Andrew, I, you know, I always was interested in writing and reading. And I come from a family of writers. My mom is a screenwriter, my grandfather was a playwright. My aunt is a novelist. And so and my dad, you know, remember when I was a kid, he had a column for videography magazine, and has always been super interested in digital technology, you know, from the earliest days of desktop publishing. And he worked for, like early days of USA Network, you know, so like this kind of shared interest that I inherited from my parents of, you know, creativity and media, I guess was one way you could put it, you know, storytelling and sort of like playing around with electronic media. And, you know, I grew up I was born in 1980. So by the time I was an adolescent, the internet was just starting to reach its tendrils into our lives. And I remember my dad bought me a modem. And when I was like, I don't know 14 or something. And I was definitely one of the first kids in my class to have a modem and you know, messing around on message boards and stuff. So that was very influential for me. You know, when it was around that time that I started to notice that I had night blindness, and I kind of diagnosed myself with retinitis pigmentosa on that early web, you know, before the days of WebMD or anything like that, but it just there didn't seem to be a lot of causes for adolescent night blindness. And so I kind of figured it out and then sort of just compartmentalized it like kick that information to the side somewhere dusty corner of my brain and just went about my life and then it wasn't until later my teenage years I'd already done a year in college I think in Ohio where I said you know what, this is getting a little more intrusive and then I've that my mom finally booked me an appointment at a at a real deal, you know, medical retinal Research Center and at UCLA. And then, you know, an actual retinal specialist said, Yep, you've got retina is pigmentosa. You'll you Will, you know, maintain decent vision into middle age and then it'll fall off a cliff. Once again, I just carried that information around for, you know, the next 20 years or so. And I'm 4040 How old am I? Mike? 22 years old? Right? Well, I actually I'm a December baby. So we gotta go, Okay, you got a couple of months to go a 42 year old medicine me. You know, and at this point in my life, you know, I had the, you know, I read about all this in the book, but I have a feeling that, like that part of his diagnosis way back when is coming true, you know, and I feel like, okay, it's all finally happening, and like, it's happening more quickly, but then my current doctor is kind of careful to reassure me that that's not actually happening. And that RP, you know, their understanding of it has evolved since then. And there's like, you know, different genetic profiles, and that, in fact, maybe I might have some residual useful vision for many years to come. But one of the things that I really wrestled with, both in the book and just in my life is the question of, you know, how much to claim to that site and how useful that site really is. And, and, and trying to figure out what, what it means to be blind, if I'm blind, you know, certainly legally blind, you know, I've half got about five or six degrees of, of central vision. You know, and so, so, so my so So, I've left your question behind at this point. But I wrote, I wrote this book, in some ways to answer that question of, like, where I, where I fit into this world of blindness? And am I an outsider, or am I an insider? like at what point do I get to be part of the club and all those really tricky questions that were really bothering me as a person, I got to kind of explore in the form of a book. Michael Hingson ** 06:52 The interesting thing about what you said in the book, however, concerning Are you an outsider or an insider, Am I blind? Or am I not? is, of course a question that everyone wrestles with. And I personally like the Jernigan definition, have you ever read his article, a definition of blindness? Andrew Leland ** 07:11 Oh, maybe tell me what he says. So what he says Michael Hingson ** 07:15 is that you should consider yourself blind from a functional standpoint, when your eyesight decreases to the point where you have to use alternatives to vision to be able to perform tasks. Now, having said that, that doesn't mean that you shouldn't use the residual vision that you have. But what you should do is learn blindness techniques, and learn to psychologically accept that from a blindness standpoint, or from a from a functional standpoint, you are blind, but you do also have eyesight, then there's no reason not to use that. But you still can consider yourself a blind person, because you are using alternatives to eyesight in order to function and do things. Andrew Leland ** 08:00 Yeah, no, I have heard that from the NFB I didn't realize its source was Jernigan. But I really aspire to live my life that way. You know, I think it's, there are some days when it's easier than others. But, you know, I'm here, learning, you know, practicing Braille, using my white cane every day, you know, like learning jaws and trying to try to keep my screen reader on my phone as much as possible. And it's funny how it becomes almost like a moral mind game that I play with myself where I'm like, okay, like, Wow, it's so much easier to use my phone with a screen reader. Like, why don't I just leave it on all the time, but then inevitably, I get to like a inaccessible website, or like, I'm trying to write and write a text message. And I'm like, Oh, am I really going to like use the rotor to like, go back up, you know, to these words, and so then I turn it back off, and then I leave it off. And I'm just like, constantly messing with my own head and this way, and I've heard from, from folks with ARPI, who are more blind than I am, who have less vision. And there is the sense that like, one relief of even though it's, you know, incontrovertibly, incontrovertibly inconvenient to have less vision, right? Like there's there's certain affordances that vision gives you that shouldn't make life easier. But But one thing that I've heard from these folks is that, you know, that kind of constant obsessing and agonizing over like, how much vision do I have? How much vision am I going to have tomorrow? How am I going to do this, with this much vision versus that much vision? Like when that goes away? It is a bit of a relief I've heard. Michael Hingson ** 09:28 Yeah, I mean, if it ultimately comes down to you can obsess over it, you can stress about it. What can I do if I lose this extra vision or not? Is is a question but the other side of it is why assume that just because you lose vision, you can't do X or Y. And that's the thing that I think so many people tend to not really deal with. I believe that we have totally an inconsistent and wrong definition of disability. Anyway, I believe that everyone on the planet has a disability. And for most people, the disability is like dependents. And my case from then my way from making that is look at what Thomas Edison did in 1878. He invented the electric light bulb, which allowed people to have light on demand. So they could function in the dark, because they couldn't really function in the dark until they had light on demand, or unless they had a burning stick or something that gave us light. But the reality is, they still had a disability. And no matter how much today we offer light on demand, and light on demand is a fine thing. No, no problem with it. But recognize that still, without that light on demand, if a if a power failure happens or something and the lights go out, sighted people are at least in a world of hurt until they get another source for light on demand. Mm hmm. I was I was invited to actually Kelly and Ryan's Oscar after party to be in the audience this year. So we went to the Hollywood Roosevelt Hotel, which is fun. I used to go there for NFB of California conventions, a great hotel, man. So we got there about three o'clock on Thursday, on Saturday afternoon, and it was my niece and nephew and I and we were all there. And we just dropped our luggage off. And we're going downstairs when suddenly I heard screaming, and I asked my niece, what's going on. And she said, there's been a power failure in and around the hotel. And I'd love to try to spread the rumor that it was all Jimmy Kimmel trying to get attention. But no one's bought that. But but the but the point is that suddenly people didn't know what to do. And I said, doesn't seem like a problem to me. And you know, it's all a matter of perspective. But we really have to get to this idea that it doesn't matter whether you can see or not. And you pointed out very well, in your book that blindness is not nearly so much the issue psychologically, as is our attitude about blindness? Absolutely. Andrew Leland ** 11:58 Yeah, I remember I interviewed Mark Riccobono, the current president of the National Federation of the Blind, and he made a very similar point, when we were talking about the nature of accommodations, which is something that I still I'm thinking a lot about is I think it's a very tricky idea. And a very important idea, which I think your your your idea of light dependency gets at, you know, in America, Bono's point was, you know, look, we have the the BR headquarters here in Baltimore, and we pay a pretty hefty electricity bill, to keep the lights on every month, and that, you know, the blind folks who work there, it's not for them, right? It's for all the sighted people who come and visit or work at the at the center. And in some ways, that's a reasonable accommodation, that the NFB is making for the sighted people that they want to be inclusive of right. And so that just even that idea of like, what is a reasonable accommodation? I think you're right, that we think of it as like the poor, unfortunate disabled people who need to be brought back to some kind of norm that's at the center. And there's the kind of reframing that you're doing when you talk about light dependency or that Riccobono is doing when he talks about, you know, his electricity bill, you know, it kind of gives the lie to puts the lie to that, that idea that, that the norm takes precedence. And the reality is that, you know, that we all need accommodations, like you say, and so what's reasonable, is really based on what, what humans deserve, which is which is to be included, and to be, you know, to have access equal access, that Michael Hingson ** 13:38 ought to be the norm. Jacobus timbre wrote a speech called the pros and cons of preferential treatment that was then paired down to a shorter article called a preference for equality. And I haven't, I've been trying to find it, it's at the NFB center, but it isn't as readily available as I would like to see it. And he talks about what equality is, and he said, equality isn't that you do things exactly the same way it is that you have access and with whatever way you need to the same information. So you can't just say, Okay, well, here's a printed textbook, blind persons that's equal under the law, it's not. And he talks about the fact that we all really should be seeking equality and looking for what will give people an equal opportunity in the world. And that's really the issue that we so often just don't face, like we should. The fact of the matter is, it's a part of the cost of business, in general to provide electricity and lights. It's a part of the cost of business to provide for companies a coffee machine, although it's usually a touchscreen machine, but it's there. It's a cost of doing business to provide desks and computers with monitors and so on. But no one views provide Seeing a screen reader as part of the cost of business and nobody views providing a refreshable Braille display or other tools that might give me an equal opportunity to be a part of society, we don't view those as part of the cost of doing business, which we should, because that's what inclusion is really all about. You know, we don't, we don't deal with the fact or sometimes we do that some people are a whole lot shorter than others. And so we provide ladders or step stools, or whatever. But we don't provide cost of doing business concepts to a lot of the tools that say, I might need or you might need. Yeah, Andrew Leland ** 15:37 yeah, it's one thing that I've been thinking about lately is, is really even just the challenge of understanding what those accommodations are. Because, you know, I think I think, practically speaking in the world, you know, you'll, you'll call up a blind person and say, What do you need, you know, like, we're trying to make this art exhibit or this, you know, business or this, you know, HR software accessible, what do you need, you know, and that one blind person might be like, well, I use NVDA, you know, or that one blind person might be low vision, right. And they might be like, I use a screen magnifier. And it's so difficult to understand, like, what the accommodations are, that would be, that would be adequate to cover, like a reasonable sample. And so just like, it's just so much more complicated than it originally seems, you know, when you have a really well meaning person saying, like, we really value diversity, equity and inclusion and accessibility. And but then like, the distance between that well meeting gesture, and then actually pulling off something that's fully accessible to a wide swath of the whatever the users are, is just, it's just unfair, quickly, huge. So that's something that I'm thinking about a lot lately is like how to how do you approach that problem? Michael Hingson ** 16:46 Well, and I think, though, the at least as far as I can tell, I think about it a lot, as well, as I think any of us should. The fact is that one solution doesn't fit everyone, I'm sure that there are people, although I'm sure it's a minority, but there are people who don't like fluorescent lights as well as incandescent lights, and neither of them like other kinds of lighting as compared to whatever. And then you have people epilepsy, epilepsy who can't deal as well, with blinking lights are blinking elements on a webpage, there's there isn't ever going to be least as near as I can tell, one size that truly fits all, until we all become perfect in our bodies. And that's got a ways to go. So the reality is, I don't think there is one solution that fits everyone. And I think that you, you pointed it out, the best thing to do is to keep an open mind and say, Yeah, I want to hire a person who's qualified. And if that person is blind, I'll do it. And I will ask them what they need. You know, an example I could give you is, was it three years ago, I guess, four years ago, now actually, I was called by someone up in Canada, who is a lawyer who went to work for a college. And we were talking about IRA, artificial intelligent, remote assistance, a IRA, you know about IRA, you wrote about it. And she said, you know, a lot of the discovery and a lot of the documentation that I need to use is not accessible through even OCR to be overly accurate, because there will be deep degradations and print and so and so I can't rely on that. And certainly, Adobe's OCR isn't necessarily going to deal with all the things that I need. So I'd like to use IRA is that a reasonable accommodation? And I said, sure it is, if that's what you need in order to be able to have access to the information, then it should be provided. Now the laws are a little different up there. But nevertheless, she went to the college and made the case and they gave her iris so she could read on demand all day, any document that she needed, and she was able to do her job. And not everyone necessarily needs to do that. And hear in probably some quarters, maybe there are other accommodations that people could use instead of using IRA. But still, Ira opened up a VISTA for her and gave her access to being able to do a job and I think that we really need to recognize that one solution doesn't fit everything. And the best way to address it is to ask somebody, what do you need in order to do your job, and we will provide it or work it out. And here in the US, of course, given although they try to renege on it so much, but given the definition of what rehabilitation is supposed to do, they're supposed to be able to and help make people employable. They should be providing a lot of these tools and sometimes getting counselors to do that. Just like pulling teeth, I'm sure you know about that. Yeah, Andrew Leland ** 20:02 I do. I do. I mean, it's interesting because I think in the face of that complexity of saying, like, Okay, we like interviewed a dozen blind people, and we like have this we know, our website is it's compatible with all the screen readers. And, you know, this event, like, you know, let's say you're doing an event, and the website is compatible with every screen reader, and it's got dynamic types. So the low vision users are happy, you know, and then the event starts and you're like, oh, wait, we forgot about the existence of deafblind people, and there's no cart, or captioners. Here. And, you know, and then the question for me another another thing I've been thinking about lately is like, how do you respond to that, you know, like, what is the? What is the response? And even just like on a kind of, like, a social level, like, is it scathing indictment, like you, you terrible people, you know, you have you have like, you don't care about deaf blind people. And so I hereby cancel you, and I'm going to, like, tweet about how terrible you are? Or is there like a more benign approach, but then you don't get what you need. And like, sort of, and I think, I think a lot of this is a function of my having grown up without a disability, really, you know, I mean, like, growing up, my I went through my, my full education, without ever having to ask for an accommodation, you know, maybe I had to sit a little closer to the board a little bit. But you know, nothing, nothing like what I'm dealing with now. And I think as a result, I am just now starting to wrap my head around, like, how when self advocates and what styles are most effective. And I think that's another really important piece of this conversation, because it's easy, I think, to walk into, you know, cafe x, or, you know, I just did it the other day, yesterday, last night, I saw this really cool looking new magazine about radio, which was an interest of mine, like great for radio producers. And it was print only, you know, and I wrote like, Hey, how can I get an accessible copy of this cool look in new magazine? And they're like, Oh, actually, we're, we're putting our resources all it were kind of a shoestring operation, all our resources are going into the print edition right now. You know, and then, so then I had a question before me, right? Like, do I say, like, Hey, everybody, like, we must not rest until you agitate for these people to make their accessible thing, or I just sort of wrote a friendly note. And I was like, there's a lot of like, blind radio makers out there who might find your stuff interesting. And I like, affectionately urge you to make this accessible. And then, you know, their hearts seems to be in the right place. And they seem to be working on making it happen. So I don't know what's your what's your thinking about that? Like how to respond to those situations. Michael Hingson ** 22:34 So my belief is whether we like it or not, every one of us needs to be a teacher. And the fact is to deal with with what you just said, let's take the radio magazine, which magazine is it by the way? Oh, I Andrew Leland ** 22:51 didn't want to call them out by name. Oh, I'm Michael Hingson ** 22:52 sorry. I was asking for my own curiosity, being very interested in radio myself. So we Andrew Leland ** 22:57 give them some good and bad press simultaneously. It's called good tape. Okay, it's brand new. And at the moment, it's as of this recording, it's print only. And, Michael Hingson ** 23:06 and tape is on the way up a good tape. No, that's okay. Anyway, but no, the reason I asked it was mainly out of curiosity. But look, you you kind of answered the question, their heart is in the right place. And it is probably true that they never thought of it. I don't know. But probably, yeah, they didn't think of it. I've seen other magazines like diversity magazine several years ago, I talked with them about the fact that their online version is totally inaccessible. And they have a print version. But none of its accessible. And I haven't seen it change yet, even though we've talked about it. And so they can talk about diversity all they want, and they talk a lot about disabilities, but they don't deal with it. I think that it comes down to what's the organization willing to do I've, I've dealt with a number of organizations that never thought about making a digital presence, accessible or having some sort of alternative way of people getting to the magazine, and I don't expect everybody to produce the magazine and Braille. And nowadays, you don't need to produce a braille version, but you need to produce an accessible version. And if people are willing to work toward that, I don't think that we should grind them into the ground at all if their hearts in the right place. And I can appreciate how this magazine started with print, which is natural. Yeah, but one of the things that you can do when others can do is to help them see maybe how easy it is to create a version that other people can can use for example, I don't know how they produce their magazine, but I will bet you virtual Anything that it starts with some sort of an electronic copy. If it does that, then they could certainly make that electronic copy a version that would be usable and accessible to the end. And then they could still provide it through a subscription process, there's no reason to give it away if they're not giving it away to other people, but they could still make it available. And I also think something else, which is, as you point out in the book, and the country of the blind, so often, things that are done for us, will help other people as well. So great tape is wonderful. But how is a person with dyslexia going to be able to read it? Yeah, so it isn't just blind people who could benefit from having a more accessible version of it. And probably, it would be worth exploring, even discussing with him about finding places to get funding to help make that happen. But if somebody's got their heart in the right place, then I think by all means, we shouldn't bless them. We should be teachers, and we should help them because they won't know how to do that stuff. Andrew Leland ** 26:10 Ya know, I love that answer to be a teacher. And I think there was I think there was a teacher Lee vibe in my, in my response to them, you know, like, this is a thing that is actually important and useful. And you ought to really seriously consider doing it. You know, I mean, I think if you think about the how people act in the classroom, you know, it's those kinds of teachers who, you know, who, who correct you, but they correct you in a way that makes you want to follow their correction, instead of just ruining your day and making you feel like you're a terrible person. But it's interesting, because if you, you know, I mean, part of a lot of this is the function of the internet. You know, I see a lot of disabled people out there calling out people for doing things and accessibly. And, you know, I feel I'm really split about this, because I really empathize with the frustration that that one feels like, there's an amazing film called, I didn't see you there by a filmmaker named Reed Davenport, who's a wheelchair user. And the film is really just, like, he kind of he mounts a camera to his wheelchair, and a lot of it is like, he almost like turns his wheelchair into a dolly. And there's these these, like, wonderful, like tracking shots of Oakland, where he lived at the time. And there's this there's this incredible scene where it's really just his daily life, like, you know, and it's very similar to the experience of a blind person, like, he'll just be on a street corner hanging out, you know, in somebody's, like, the light screen, you know, like, what do you what are you trying to do, man, and he's like, I'm just here waiting for my car, my ride, you know, like, leave me alone. You don't need to intervene. But there's this incredible scene where there are some workers in his building are like, in the sort of just sort of unclear like they're working. And there's an extension cord, completely blocking the path, the visible entrance to his apartment, and he can't get into his house. And he's just this, like, the, the depth of his anger is so visceral in that moment. You know, and he yells at them, and they're like, oh, sorry, you know, they kind of don't care, you know, but they like, they're like, just give us a second. And he's like, I don't have a second, like, I need to get into my house. Now. You know, he just has no patience for them. And it's understandable, right? Like, imagine you're trying to get home. And as a matter of course, regularly every week, there's something that's preventing you. And then and then and then you see him when he finally gets back into his apartment. He's just like, screaming and rage. And it's, you know, so that rage I think, is entirely earned. You know, like, I don't I don't think that one one should have to mute one's rage and how and be a kindly teacher in that moment. Right. But, so So yeah, so So I kind of see it both ways. Like, there are moments for the rage. And then I guess there are moments for the mortar teacher like because obviously, like the stakes of me, getting access to good tape magazine are very different than the stakes for read like getting into his apartment. Right? Michael Hingson ** 28:53 Well, yes and no, it's still access. But the other part about it is the next time, that group of people in whatever they're doing to repair or whatever, if they do the same thing, then they clearly haven't learned. Whereas if they go, Oh, we got to make sure we don't block an entrance. Yeah, then they've learned a lesson and so I can understand the rage. I felt it many times myself, and we all have and, and it's understandable. But ultimately, hopefully, we can come down. And depending on how much time there is to do it, go pick out and say, Look, do you see what the problem is here? Yeah. And please, anytime don't block an entrance or raise it way up or do something because a person in a wheelchair can't get in. And that's a problem. I so my wife always was in a wheelchair, and we were married for two years she passed last November. Just the bye He didn't keep up with the spirit is what I tell people is really true. But I remember we were places like Disneyland. And people would just jump over her foot rests, how rude, you know, and other things like that. But we, we faced a lot of it. And we faced it from the double whammy of one person being in a wheelchair and one person being blind. One day, we went to a restaurant. And we walked in, and we were standing at the counter and the hostess behind the counter was just staring at us. And finally, Karen said to me, well, the hostess is here, I don't think she knows who to talk to, you know, because I'm not making necessarily eye contact, and Karen is down below, in in a wheelchair. And so fine. I said, maybe if she would just ask us if we would like to sit down, it would be okay. And you know, it was friendly, and it broke the ice and then it went, went from there. But unfortunately, we, we, we bring up children and we bring up people not recognizing the whole concept of inclusion. And we we really don't teach people how to have the conversation. And I think that that's the real big issue. We don't get drawn into the conversation, which is why diversity is a problem because it doesn't include disabilities. Andrew Leland ** 31:16 Mm hmm. Yeah. I mean, that seems to be changing. You know, I mean, you have you know, you have a lot more experience in this realm than I do. But But But haven't you felt like a real cultural shift over the last, you know, 2030 years about disability being more front of mind in that conversation? Michael Hingson ** 31:36 I think it's, it's shifted some. The unemployment rate among employable blind people, though, for example, hasn't changed a lot. A lot of things regarding blindness hasn't really, or haven't really changed a lot. And we still have to fight for things like the National Federation of the Blind finally took the American Bar Association, all the way to the Supreme Court, because they wouldn't allow people to use their technology to take the LSAT. Yeah, lawyers of all people and you know, so things like that. There's, there's so many ways that it continues to happen. And I realized we're a low incidence disability. But still, I think, I think the best way to really equate it. You mentioned in Goldstein in the book, Dan, who I saw, I think, is a great lawyer spoke to the NFB in 2008. And one of the things he talked about was Henry, mayor's book all on fire. And it's about William Lloyd Garrison, the abolitionist and he was looking for allies. And he heard about these, these two, I think, two ladies, the Grimm case, sisters who were women's suffragettes, and they and he said, Look, we should get them involved. And people said, no, they're dealing with women's things. We're dealing with abolition, it's two different things. And Garrison said, No, it's all the same thing. And we've got to get people to recognize that it really is all the same thing. The you mentioned, well, you mentioned Fred Schroeder and the American Association of Persons with Disabilities at various points in the book. And in 1997. Fred, when he was RSA Commissioner, went to speak to the AAPD talking about the fact that we should be mandating Braille be taught in schools to all blind and low vision kids. And the way he tells me the story, they said, Well, that's a blindness issue. That's not our issue, because most of those people weren't blind. And that's unfortunate, because the reality is, it's all the same thing. Andrew Leland ** 33:41 Yeah, no, that's something, uh, Dan Goldstein was a really important person for me to meet very early on in the process of writing the book, because I mean, just because he's, he's brilliant. And yeah, such a long history of, of arguing in a very, you know, legalistic, which is to say, very precise, and, you know, method, methodical way. A lot of these questions about what constitutes a reasonable accommodation, you know, as in like, his, his, the lawsuits that he's brought on behalf of the NFB have really broken ground have been incredibly important. So he's, he was a wonderful resource for me. You know, one of the things that he and I talked about, I remember at the beginning, and then, you know, I had lunch with him earlier this week, you know, we still are talking about it. And it's exactly that that question of, you know, the thing that the thing that really dogged me as I pursued, writing this book, and one of the kinds of questions that hung over it was this question of identity. And, you know, like, the sense that like the NFB argues that blindness is not what defines you. And yet, there it is, in their name, the National Federation of the Blind by and like, Where does where does this identity fit? And, you know, and I think that when you talk about other identities like Like the African American civil rights movement, or, you know, you mentioned the suffragette movement, you know, the feminist movement. You know, and it's interesting to compare these other identity based civil rights movements, and the organized by movement and the disability rights movement. And think about the parallels, but then there's also I think, disconnects as well. And so that was one of the things that I was it was really, really challenging for me to, to write about, but I think it's a really important question. And one that's, that's really evolving right now. You know, one of the things that I discovered was that, you know, in addition to the sort of blind or disability rights movement, that's very much modeled on the civil rights model of like, you know, my the first time I went to the NFB convention in 2018, you know, the banquet speech that Mark Riccobono gave was all about the speech of women and the women in the Federation, you know, which, which someone told me afterwards like, this is all new territory for the NFB, like, you know, they don't, there, there hasn't traditionally been this sort of emphasis on, including other identities, you know, and I found that was, I found that interesting, but then also, I was so struck by a line in that speech, where Riccobono said, you know, the fact that they were women is not as important as the fact that they were blind people fighting for, you know, whatever was like the liberation of blindness. And, you know, so it's, there's still always this emphasis on blindness as, like, the most important organizing characteristic of somebody is a part of that movement. And it makes total sense, right, it's the National Federation of the Blind, and they're fighting that 70% unemployment rate. And, you know, I think by their lights, you don't get there by you know, taking your eyes off the prize in some ways. And, and so I was really struck by some of these other groups that I encountered, particularly in 2020, when a lot of the sort of identity right questions came to the fore with the murder of George Floyd, right. You know, and then I was attending, you know, because it was 2020 it was that the convention was online, and I you know, I read it, this is all in the book, I, I went to the LGBT queue meet up, and which, which is also like a shockingly recent development at the NFB, you know, there's this notorious story where President Maher, you know, ostentatiously tears up a card, at a at an NFB convention where there are LGBT. NFB is trying to organize and have an LGBTQ meet up and he sort of ostentatiously tears it up as soon as he reads what's on the card. You know, a lot of still raw pain among NF beers who I talked to about that incident, anyway, like that this this LGBTQ meetup, you know, there's, there's a speaker who's not part of the NFB named justice, shorter, who works in DC, she's, she's blind, you know, and she's part of what is called the, you know, the Disability Justice Movement, which is very much about decentering whiteness, from the disability rights struggle and centering, black, queer, you know, people of color, who are also disabled, and and in some ways, I've found the NFB struggling to, to connect with with that model. You know, I talked to a Neil Lewis, who's the highest ranking black member of the NFV, you know, and he wrote this really fascinating Braille monitor article in the wake of, of George Floyd's death, where he's sort of really explicitly trying to reconcile, like Black Lives Matter movement with live the life you want, you know, with with NFB slogans, and it's, it's a tough thing to do, he has a tough job and trying to do that, because because of the thing, you know, that that I'm saying about Riccobono, right, it's like he is blind is the most important characteristic, or where do these other qualities fit? So it's a very contemporary argument. And it's one that I think the the organized blind movement is still very actively wrestling with. Michael Hingson ** 39:02 I think it's a real tough thing. I think that blindness shouldn't be what defines me, but it's part of what defines me, and it shouldn't be that way. It is one of the characteristics that I happen to have, which is why I prefer that we start recognizing that disability doesn't mean lack of ability. Disability is a characteristic that manifests itself in different ways to people and in our case, blindness as part of that. For Women. Women is being a woman as part of it for men being a man as part of it for being short or tall, or black or whatever. Those are all part of what defines us. I do think that the National Federation of the Blind was an organization that evolved because, as I said earlier, we're not being included in the conversation and I think that for the Federation and blindness is the most important thing and ought to be the most important thing. And I think that we need to be very careful as an organization about that. Because if we get too bogged down in every other kind of characteristic that defines people, and move away too much from dealing with blindness, we will weaken what the message and the goals of the National Federation of the Blind are. But we do need to recognize that blindness isn't the only game in town, like eyesight isn't the only game in town. But for us, blindness is the main game in town, because it's what we deal with as an organization. Well, Andrew Leland ** 40:40 how do you reconcile that with the idea that you were talking about before with with, you know, with the argument that like, you know, with the historical example of, you know, it's the same fight the suffragettes and like it because it doesn't that kind of, isn't that kind of contradicting that idea that like, having the intersection of identities, you know, and these movements all being linked by some kind of grand or systemic oppression, you know, so it is it is relevant? Well, Michael Hingson ** 41:06 it is, yeah, and I'm not saying it any way that it's not relevant. What I am saying, though, is the case of the Grimm case, sisters, he wanted their support and support of other supportive other people, Garrison did in terms of dealing with abolition, which was appropriate, their main focus was women's suffrage, but it doesn't mean that they can't be involved in and recognize that we all are facing discrimination, and that we can start shaping more of our messages to be more inclusive. And that's the thing that that I don't think is happening nearly as much as it ought to. The fact is that, it doesn't mean that blind people shouldn't be concerned about or dealing with LGBTQ or color, or gender or whatever. Yeah. But our main common binding characteristic is that we're all blind men. So for us, as an organization, that should be what we mostly focus on. It also doesn't mean that we shouldn't be aware of and advocate for and fight for other things as well. But as an organization, collectively, the goal really needs to be dealing with blindness, because if you dilute it too much, then you're not dealing with blindness. And the problem with blindness as being a low incidence disability, that's all too easy to make happen. Right? Andrew Leland ** 42:35 Yeah. Yeah, it's interesting. Yeah, it's interesting, just thinking about that question of dilution versus strengthening, you know, because I think I think if you ask somebody in the Disability Justice Movement, the dilution happens precisely, with an overemphasis on a single disability, right, and then you lose these like broader coalition's that you can build to, you know, I think I think it comes down to maybe like the way that you are our analysts analyzing the structures of oppression, right, like, right, what is it that's creating that 70% unemployment? Is it something specifically about blindness? Or is it like a broader ableist structure that is connected to a broader racist structure? You know, that's connected to a broader misogynist structure? You know, and I think if you start thinking in those structural terms, then like, coalition building makes a lot more sense, because it's like, I mean, you know, I don't know what kind of political affiliation or what but political orientation to take with us, you know, but certainly the Disability Justice Movement is pretty radically to the left, right. And I think traditionally, the NFB, for instance, has had a lot more socially conservative members and leaders. And so it's, you know, that reconciliation feels almost impossibly vast to to think of like an organization like the NFB taking the kind of like, abolitionist stance that a lot of these disability justice groups take to say, like, actually, capitalism is the problem, right. So yeah, so I mean, the thought experiment only goes so far, like, what like a Disability Justice oriented NFP would look like. But you know, that I think there are young members, you know, and I do think it's a generational thing too. Like, I think there are NF beers in their 20s and 30s, who are really wrestling with those questions right now. And I'm really interested to see what they come up with. Michael Hingson ** 44:29 I think that the biggest value that the NFB brings overall, and I've actually heard this from some ACB people as well, is that the ENFP has a consistent philosophy about what blindness is and what blindness is. And and that is probably the most important thing that the NFP needs to ensure that it that it doesn't lose. But I think that the whole and the NFP used to be totally As coalition building that goes back to Jernigan and Mauer, although Mauer started to change some of that, and I think it will evolve. But you know, the NFB. And blind people in general have another issue that you sort of brought up in the book, you talk about people who are deaf and hard of hearing, that they form into communities and that they, they have a culture. And we don't see nearly as much of that in the blindness world. And so as a result, we still have blind people or sighted people referring to us and and not ever being called out as blind or visually impaired. But you don't find in the deaf community that people are talking about deaf or hearing impaired, you're liable to be shot. It's deaf or hard of hearing. And yeah, the reality is, it ought to be blind or low vision, because visually impaired is ridiculous on several levels visually, we're not different and impaired. What that's that's a horrible thing to say. But as a as an as a group. I was going to use community, but I but I guess the community isn't, as well formed to deal with it yet. We're not there. And so all too often, we talk about or hear about visually impaired or visual impairment. And that continues to promote the problem that we're trying to eliminate. Mm Andrew Leland ** 46:22 hmm. Yeah. Yeah, that question of blank community is fascinating. And yeah. And I do think that I mean, you know, from my reading the book, I certainly have found blank community. But, you know, if I really think about it, if I'm really being honest, I think it's more that I've met, it's, you know, my work on the book has given me access to really cool blind people that I have gotten to become friends with, you know, that feels different than, like, welcome to this club, where we meet, you know, on Tuesdays and have our cool like, blind, you know, paragliding meetups, you know, not that not that people aren't doing that, like, then they're a really, you know, I would like to get more if I lived in a more urban center, I'm sure it would be involved in like, you know, the blind running club or whatever, willing to hang out with blind people more regularly, but it doesn't feel like a big community in that way. And it's interesting to think about why. You know, I think one big reason is that it's not, it's not familial, in the same way, you know, Andrew Solomon wrote a really interesting book called far from the tree that gets at this where, you know, like, the when, when, when a child has a different identity than a parent, like, you know, deaf children of hearing adults, you know, there doesn't, there isn't a culture that builds up around that, you know, and it's really like these big deaf families that you have with inherited forms of deafness, or, you know, and then schools for the deaf, that, you know, and with deaf culture in particular, you know, really what we're talking about is language, you know, in sign language, right, creates a whole rich culture around it. Whereas, with hearing blind people, you know, they're more isolated, they're not necessarily automatically you have to, you have to really work to find the other blind people, you know, with, with travel being difficult, it's a lot easier to just like, Get get to the public library to meet up in the first place, and so on. So, yeah, it feels a lot more fractured. And so I think you do see groups more like the NFB or the ACB, who are organizing around political action, rather than, you know, like a culture of folks hanging out going to a movie with open audio description, although, I will say that the weeks that I spent at the Colorado Center for the Blind, you know, which is, you know, you can think of it as like a, you know, it's a training center, but in some ways, it's like an intentional blind community do right where you're like, that's like a blind commune or something. I mean, that is just a beautiful experience, that it's not for everyone in terms of their their training method. But if it is for you, like, wow, like for just such a powerful experience to be in a community, because that is a real community. And it nothing will radically change your sense of what it means to be blind and what it means to be in a black community than then living for a while at a place like that. It was a really transformative experience for me. Michael Hingson ** 49:11 Do you think that especially as the younger generations are evolving and coming up, that we may see more of a development of a community in the blindness in the blindness world? Or do you think that the other forces are just going to keep that from happening? Well, Andrew Leland ** 49:30 you know, one of the things that I discovered in writing the book was that, you know, and this is sort of contradicting what I just said, because there there is a blind community. And, you know, I read in the book like, at first I thought that blind techies were another subculture of blindness, like blind birders are blind skateboarders, right. But then the more I looked into it, the more I realized that like being a techie is actually like a kind of a basic feature of being a blind person in the world. You know, and I don't hear if it's 2023 or 1823, you know, because if you think about the problem of blindness, which is access to information, by and large, you know, you basically have to become a self styled information technologist, right? To, to get what you need, whether it's the newspaper, or textbooks or signs, road signs, or whatever else. So. So I do and I do think that like, you know, when my dad was living in the Bay Area in the 90s, you know, when I would go visit him, you know, he was a techie, a sighted techie. And, you know, he would always be part of like, the Berkeley Macintosh user group, just be like, these nerds emailing each other, or, you know, I don't even know if email was around, it was like, late 80s. You know, but people who have like the Mac 512, KS, and they would, they would connect with each other about like, Well, how did you deal with this problem? And like, what kind of serial port blah, blah, blah? And that's a community, right? I mean, those people hang out, they get rise together. And if there's anything like a blind community, it's the blind techie community, you know, and I like to tell the story about Jonathan mosun. I'm sure you've encountered him in your trailer. I know Jonathan. Yeah. You know, so I, when I discovered his podcast, which is now called Living blind, fully blind, fully, yeah. Yeah. I, I was like, oh, okay, here are the conversations I've been looking for, because he will very regularly cover the kind of like social identity questions that I'm interested in, like, you know, is Braille like, is the only way for a blind person to have true literacy through Braille? Or is using a screen reader literacy, you know? Or like, is there such a thing as blind pride? And if so, what is it? I was like? These are the kinds of questions I was asking. And so I was so delighted to find it. But then in order to, in order to get to those conversations, you have to sit through like 20 minutes of like, one password on Windows 11 stopped working when I upgraded from Windows 10 to Windows 11. And so like, what, you know, if you what Jaws command, can I use in and I was like, why is this? Why is there like 20 minutes of Jaws chat in between these, like, really interesting philosophical conversations. And eventually, I realized, like, oh, because that's like, what this community needs and what it's interested in. And so in some ways, like the real blind community is like the user group, which I think is actually a beautiful thing. Yeah. Michael Hingson ** 52:14 Well, it is definitely a part of it. And we do have to be information technologists, in a lot of ways. Have you met? And do you know, Curtis Chang, Andrew Leland ** 52:23 I've met him very briefly at an NFB convention. So Curtis, Michael Hingson ** 52:28 and I have known each other Gosh, since the 1970s. And we both are very deeply involved in a lot of things with technology. He worked in various aspects of assistive technology worked at the NFB center for a while and things like that, but he always talks about how blind people and and I've heard this and other presentations around the NFB, where blind people as Curtis would put it, have to muddle through and figure out websites. And, and the fact is, we do it, because there are so many that are inaccessible. I joined accessibe two years ago, two and a half years ago. And there are a lot of people that don't like the artificial, intelligent process that accessibe uses. It works however, and people don't really look far enough that we're not, I think, being as visionary as we ought to be. We're not doing what we did with Ray Kurzweil. And look, when the Kurzweil project started with the NFB Jernigan had to be dragged kicking and screaming into it, but Ray was so emphatic. And Jim Gasol at the Washington office, finally convinced kindred again to let him go see, raised machine, but the rules were that it didn't matter what Ray would put on the machine to read it and had to read what Gasol brought up. Well, he brought it did and the relationship began, and it's been going ever since and, and I worked, running the project and the sense on a day to day basis, I traveled I lived out of hotels and suitcases for 18 months as we put machines all over and then I went to work for Ray. And then I ended up having to go into sales selling not the reading machine, but the data entry machine, but I guess I kept to consistently see the vision that Ray was bringing, and I think he helped drag, in some ways the NFB as an organization, more into technology than it was willing to do before. Interesting. Andrew Leland ** 54:27 Yeah, I heard a similar comment. The one thing I got wrong in the first edition of the book that I'm correcting for subsequent reprints, but I really bungled the description of the Opticon. And my friend, Robert Engel Britton, who's a linguist at Rice University, who collects opera cones. I think he has got probably like a dozen of them in his house. You know, he helped me you know, because I didn't have a chance to use one. Right he helped me get a better version of it. But he also sent me a quote, I think it was from Jernigan was similar thing where like, I think they were trying to get the public I'm included with, you know, voc rehab, so that that students could not voc rehab or whatever like so that students could get blind students could use them. And it was the same thing of like, you know, this newfangled gizmo is not going to help, you know, Braille is what kids need. So I do that, that's all to say that that makes sense to me that resistance to technology, you know, and it's like, it's a, it's a, it's a sort of conservative stance of like, we understand that what blind people need are is Braille and access to, you know, equal access. And don't don't try to give us any anything else. And you know, and I think, to be fair, like, even though the Opticon sounded like an incredibly useful tool, as is, of course, the Kurzweil Reading Machine and everything that followed from it. There. There is, you know, talking, I talked to Josh Meili, for the book, who's who now works at Amazon, you know, he had this great story about his mentor, Bill, Gary, who, who would, who would basically get a phone call, like once a week from a well, very well meaning like retired sighted engineer, who would say like, oh, you know, what the blind need? It's like the laser cane, right? Or the Yeah, it's like, basically like a sippy cup for blind people like so that they don't spill juice all over themselves. And, you know, and Gary would very patiently be like, Oh, actually, they don't think that that would be helpful to do probably, yeah. Talk to a blind person first, maybe before you spend any more time trying to invent something that blind people don't need. So I think that resistance to like newfangled technology, there's a good reason for it. Well, Michael Hingson ** 56:26 there is but the willingness to take the Opticon. Look, I think the fastest I ever heard of anybody reading with an optical was like 70 or 80 words a minute, and there are only a few people who did that. Yeah. You know, Candy Lynnville, the daughter of the engineer who invented it, could and Sue Mel Rose, who was someone I knew, was able to and a few people were but what the Opticon did do even if it was slow, yeah, it was it still gave you access to information that you otherwise didn't get access to. And, and I had an optic on for a while. And the point was, you could learn to read and learn printed letters and learn to read them. It wasn't fast. But you could still do it. Yeah. And so it, it did help. But it wasn't going to be the panacea. I think that tele sensory systems wanted it to be you know, and then you talked about Harvey Lauer who also develop and was involved in developing the stereo toner, which was the audience since the audio version of the optic comm where everything was represented audio wise, and, and I spent a lot of time with Harvey Harvey at Heinz a long time ago. But the the fact is, I think the question is valid is listening, and so on literacy is literacy, like Braille. And I think there is a difference there is, are you illiterate, if you can't read Braille, you point out the issues about grammar, the issues about spelling and so on. And I think that there is a valid reason for people learning Braille at the Colorado Center, they would tell you, for senior blind people, you may not learn much Braille, but you can learn enough to be able to take notes and things like that, or, or put labels on your, your soup cans, and so on. So it's again, going to be different for different people. But we are in a society where Braille has been so de emphasized. And that's the fault of the educational system for not urging and insisting that more people be able to use Braille. And that's something that we do have to deal with. So I think there is a literacy problem when people don't learn braille. But I also think that, again, there are a lot of things that Braille would be good for, but using audio makes it go faster. It doesn't mean you shouldn't learn braille, though, right? Yeah, Andrew Leland ** 58:51 no, it's another I think it's interesting. And it's a related idea, this, this sense that technology, you know, this like, just sort of wave your hands and say the word technology as a sort of panacea, where I think, you know, it's, it's a tragic story where, where people will say, Oh, well, you know, little Johnny has, you know, some vision. So like, he could just use technology, like he doesn't need Braille. And it's fascinating to me, because I never really felt it. And maybe it's because I encountered Braille at a point in my development as a blind person that I really was hungry for it. But, you know, people talk about Braille the way they talked about the white cane, like the white cane, I felt so much shame about using in public, and it's such, it's just so stigmatized, whereas Braille, I just always thought it was kind of cool. But you know, you hear it so much from parents where they it's just like their heartbreak seeing their child reading with their fingers, which is, you know, and so as a result, they're like, why don't I just buy like a gigantic magnifier, that maybe in five years, you're not gonna be able to use anyway, but like, at least you're reading the same type of book that Michael Hingson ** 59:56 half hour or 45 minutes until you start getting headaches. Exactly. And that, you know, I worked on a proposal once. I was an evaluator for it. We were in a school in Chicago, and one of the teachers talked about Sally who could see and Johnny, who was totally blind, literally, it was Sally and Johnny. And she said, Sally gets to read print, Johnny has to read Braille. Sally couldn't read print very fast. her eyesight wasn't good. Yeah, she got to read print. And Johnny had to read Braille. Yeah, it's the kind of thing that we we see all the time. And it's so unfortunate. So yeah, I, I do understand a lot of the technology resistance. But again, people like Ray helped us vision a little differently. But unfortunately, getting that conversation to other people, outside of the NFB community, like teachers and so on, is so hard because so many people are looking at it from a science point of view and not recognizing it as it should be. The the NFB did a video that did it. Several, they have had a whole series of things regarding Braille. But they interviewed a number of people who had some residual vision, who were never allowed to learn to read Braille. And invariably, these people say how horrible it was that they didn't get to learn to read Braille, they learned it later. And they're, they're reading slower than they really should. But they see the value of it. And it's important that we hopefully work to change some of those conversations. Yeah, Andrew Leland ** 1:01:33 I mean, it gets back to our earlier in our conversation a
Does your child experience frequent and intense tantrums? Is their irritability and anger impacting their daily life and relationships? This episode delves into the world of Disruptive Mood Dysregulation Disorder (DMDD), a condition characterized by persistent irritability and severe temper outbursts.On this episode of Raising Joy, pediatric psychiatrist Rachel Talbot, M.D., of Cook Children's sheds light on this misunderstood but common diagnosis. She helps us navigate the complexities of DMDD, differentiating it from other mood disorders like childhood bipolar, and identifying its unique symptoms at home and at school.Whether you're a parent seeking understanding and guidance, a teacher hoping to better support students with DMDD, or someone interested in learning about this complex condition, this episode offers a wealth of knowledge and practical insights.
MS is misdiagnosed too often, which leaves some people who don't have MS receiving expensive disease-modifying therapy that they don't need, while leaving other people who do have MS still not receiving treatment with a disease-modifying therapy that will slow disability progression and preserve their quality of life longer. My guest, Dr. Andrew Solomon, is the lead author of a paper published by a team of international experts that provides updated guidance for healthcare professionals on clinical approaches to diagnosing MS. Dr. Solomon joins me to discuss why MS can be difficult to diagnose and how that situation can be improved upon. We're also sharing the results of a study that showed how neurofilament light chain levels in the blood can predict MS disability progression one or two years before that worsening occurs. For the past five years, we've been following the path of an investigative stem cell therapy through clinical trials. We'll tell you why the company behind this therapy announced it was stopping its Phase 2 trial. If you're a female living with MS, we're sharing an invitation for you to participate in an important online survey about a topic that's too often overlooked. And we'll tell you about the results of a study that underscore the value and importance of staying on your disease-modifying therapy. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The risks of misdiagnosing MS :22 Results from a study show that neurofilament light chain level can predict future disability progression 1:37 We've been following an investigative stem cell therapy since 2018. Now, the company developing this therapy is ending the Phase 2 clinical trial 4:59 If you're a female living with MS, we have an invitation for you to participate in an important survey 7:15 Study results underscore the importance of staying on your disease-modifying therapy 9:01 Dr. Andrew Solomon discusses why MS is difficult to diagnose and what experts are doing about that 12:54 Share this episode 30:41 Have you downloaded the free RealTalk MS app? 31:02 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/324 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Neurofilament Light Chain Elevation and Disability Progression in Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/article-abstract/2811628 SURVEY: Patient Education Preferences Regarding Sexual Health in Women with Multiple Sclerosis https://openredcap.nyumc.org/apps/redcap/surveys/?s=D7L4NKPWMJA98RXP STUDY: Impact of Adherence to Disease-Modifying Drugs in Multiple Sclerosis: A Study on Italian Real-World Data https://www.sciencedirect.com/science/article/abs/pii/S2211034823005953 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 324 Guest: Dr. Andrew Solomon Privacy Policy
Setting boundaries with kids is an important part of parenting, but it can also be challenging. In this episode of the Raising Joy podcast, we speak with Rebecca Clark, a licensed professional counselor at Cook Children's, about the importance of boundaries, how to set them in a loving and supportive way, and how to deal with common challenges. This episode is a must-listen for parents, teachers, and healthcare workers who want to learn more about setting boundaries with kids.
What's the state of mental health for kids? What are psychiatrists seeing in their patients? Have we turned the corner on the mental health crisis post-COVID-19 pandemic? On this episode of Raising Joy, Wini King interviews co-host Kristen Pyrc, M.D., co-medical director of psychiatry at Cook Children's. Dr. Pyrc shares what she's seeing in her office and how things have changed in recent years.
On this episode of Raising Joy, we hear the story of Megan Hodges Cook, community program coordinator at Cook Children's. Her story isn't easyfor her to share, but she hopes it will help other parents in similar situations, and provide some insight into a topic that has become extremely controversial.Megan is the mother of a transgender child. Her daughter came out to her when she was 12 years old, though she saw the signs nearly a decade prior. Megan isn't embarrassed or ashamed of her story, but she knows some will have a difficult time understanding her journey. We hope listeners of this podcast will embrace Cook Children's values of kindness and respect, and embrace Megan's story of unconditional love for her child.
In this episode of Raising Joy, we discuss a new peer-to-peer support program that is underway in Cook Children's Pediatric Intensive Care Unit (PICU). Chaplain Amanda Payne Lindsay and Katelyn Terry, RN, join us to talk about the program's goals, how it works, and the impact it's having on PICU staff.The PICU can be a traumatic environment for health care workers, and this program is aimed at limiting the impact of stress, depression, anxiety, and burnout. The program trains appointed PICU employees to serve as supportive peers to lean on in times of need.Listen to learn how they started the peer-to-peer support program and why similar programs could benefit workplaces of all kinds.
Helen Ramsbottom, RN, and Melody Hackfeld, RN, both case managers with Cook Children's psychiatric department, join the Raising Joy podcast to discuss how to manage a child's mental health care after they are released from an inpatient psychiatric unit. They also discuss resources and support groups for parents, such as Links of Hope.In addition, we learn about the ASQ tool, which is used by nurses in the emergency department at Cook Children's to identify suicidal patients. The tool is comprised of questions that are asked to every patient, regardless of their reason for visiting the emergency department. Since 2017, 640 suicidal children have been identified and received the support they needed. You can learn more about the ASQ tool in the Journal of Child and Adolescent Psychiatric Nursing and on Checkup Newsroom. In this episode, you will learn:· What to expect when your child is discharged from an inpatient psychiatric unit· How to create a transition plan to help your child adjust to being home· How to support your child's long-term mental healthListen in to learn how to help your child thrive!
Managing emotions as a parent when your child receives a complex medical diagnosis can be incredibly challenging. In this episode of Raising Joy, we talk to Katie Senter, a member of the Family Advisory Council at Cook Children's. Katie's daughter, Louise, has a very rare medical condition called 1p36 deletion syndrome, which is a chromosome disorder that typically causes severe intellectual disability.Katie shares her personal experiences of coping with Louise's diagnosis, and offers practical advice on how other parents can manage their own emotions during this difficult time. She also talks about the importance of finding support from other parents who are going through similar experiences.If you're a parent who is struggling to cope with your child's complex medical diagnosis, this episode is for you. Katie's story is both inspiring and informative, and her advice can help you on your own journey.Listen to this episode of Raising Joy to learn more about:· Katie's experience of receiving Louise's diagnosis and how she coped with her emotions.· Practical advice on how to manage your own emotions as a parent of a child with a complex medical diagnosis.· The importance of finding support from other parents who are going through similar experiences.
Having a child in the NICU can be a very stressful and emotional experience for parents. In this episode of Raising Joy, we talk to Landy Blackmore, whose daughter, Tillie, was born prematurely and spent time in Cook Children's NICU. Landy shares her personal story and offers practical advice on how to cope with the emotional rollercoaster that comes with having a child in the NICU.Whether you're feeling overwhelmed, scared, or simply exhausted, Landy's insights and support can help you navigate this difficult time.If you're a parent whose child is in the NICU, or if you know someone who is, be sure to listen to this episode of Raising Joy!
Sharon Herrera grew up feeling like she didn't belong. She was Mexican-American and gay, and struggled to feel comfortable in her own skin… even suffering from suicidal thoughts. But then, one supportive adult helped her turn things around. Now, Sharon is an advocate for LGBTQ+ youth in Tarrant County. She founded LGBTQ Saves, a nonprofit that provides a safe space for LGBTQ+ youth and their families to be themselves.In this episode of Raising Joy, Sharon shares her story of hope and resilience. She also talks about the importance of having supportive adults in our lives. Join us for this heartfelt conversation with Sharon Herrera.
In this conversation, mental health advocate Andrew Solomon challenges societal norms and explores the complex relationship between depression and identity. Andrew also strives to uncover the delicate balance between suffering and growth in his thought-provoking exploration of the complexities of mental health. In this episode, you'll be able to: Uncover why resilience and personal control are integral to overcoming adversities Gain an understanding of the multifaceted nature of depression as both a medical condition and a way of self-perception Understand the profound implications of social media on the mental wellness of today's younger generation Learn the necessity of a broader vocabulary to accurately represent non-traditional family dynamics Discern the interconnected impacts of neglect, poverty, and foster care on mental health To learn more, click here!See omnystudio.com/listener for privacy information.
Getting back into a routine after a long summer break can be tough for kids of all ages. In this episode of Raising Joy, we talk to Cook Children's psychologist,Whitney Appleby, Ph.D., about all things school. Dr. Appleby shares her expert advice on how to help kids get a good night's sleep, create a healthy routine, manage anxiety, and avoid burnout. As a mom of three, she knows the struggle is real, but she also knows that with a little planning and effort, we can set our kids up for a successful school year. If you're looking for some helpful advice on how to get your kids back into a school routine, be sure to listen to this episode of Raising Joy!
Andrew Solomon is a New York Times Bestselling author, a regular New Yorker contributor, and a person with clinical depression.Andrew's book, 'The Noonday Demon, An Atlas of Depression' was nominated for the Pulitzer Prize and won the 2001 National Book Award. The Noonday Demon's contribution to our understanding not only of mental illness but also of the human condition is stunning, examining depression in personal, cultural, and scientific terms.Drawing on his own struggles with the illness and interviews with fellow sufferers, doctors and scientists, policymakers and politicians, Solomon reveals the subtleties the complexities, and the agony of the disease. ,
The Katherine Massey Book Club @ The C.O.W.S. hosts the 2nd study session on Sue Klebold's A Mothers' Reckoning. Published nearly 20 years after the notorious 1999 Columbine High School massacre, where 13 people were killed, Mrs. Klebold is the White mother of Dylan Klebold - one of the cowardly White killers. After spending years in silence, Klebold stepped center stage to share her anguish over losing her child and her perspective on her child's attempt to slaughter hundreds of his classmates while disintegrating the high school. Denver Public Radio reports the book has generated over $400,000 for numerous mental health groups. They had no evidence of payments to Mrs. Klebold. Last week, we heard a chunky introduction from Andrew Solomon, a gay White man, who insists that the Klebolds and other parents of White shooters are not to blame for their homicidal offspring. She also tells us what a swell person and parent Sue is, and he joins Dave Cullen, another gay White Man, in affixing most of the blame to the "psychopath" Eric Harris. Sue recalls her intense denial about her child's involvement in the school bombing and shooting. She then details how her White homies constructed a modern underground railroad to sneak the Klebold family out of town away from the media frenzy. They tucked roast beef sandwiches in her hand and assured her she was still "one of us" - meaning the White race. #MotherSuperior #BomberMan #TheCOWS14Years INVEST in The COWS – http://paypal.me/TheCOWS Cash App: https://cash.app/$TheCOWS CALL IN NUMBER: 605.313.5164 CODE: 564943#
The Katherine Massey Book Club @ The C.O.W.S. hosts debut study session on Sue Klebold's A Mothers' Reckoning. Published nearly 20 years after the notorious 1999 Columbine High School massacre, where 13 people were killed, Mrs. Klebold is the White mother of Dylan Klebold - one of the cowardly White killers. After spending years in silence, Klebold stepped center stage to share her anguish over losing her child and her perspective on her child's attempt to slaughter hundreds of his classmates while disintegrating the high school. Allegedly, a percentage of the proceeds are donated to mental health causes. Given The C.O.W.S.'s recent and extensive research on this subject matter, we should be in prime position to interrogate what this Racist Suspect mother has to say. Gus finds it noteworthy that Andrew Solomon, a "gay" White male, Suspected Racist, authors the introduction to the book. Cullen is also a "gay" White male, and the both write to absolve Dylan of responsibility for killing children and practicing White Supremacy. #MotherSuperior #TheCOWS14Years INVEST in The COWS – http://paypal.me/TheCOWS Cash App: https://cash.app/$TheCOWS CALL IN NUMBER: 605.313.5164 CODE: 564943#
Have you ever felt like the challenges you experience in life are meaningless? According to Kabbalah, every single bump in the road is there to help us evolve into something more than we are today. We invite you to join us for this live-recorded episode of Spiritually Hungry as we discuss the purpose of darkness in life.“You have the ability to say, this isn't just a terrible thing I'm going through—there's a purpose to this. And not only is there a purpose to this, but this is actually the purpose of life.” - Michael BergFurther Readings:Far From the Tree, by Andrew Solomon
This month we've been talking about relationships.This week I heard Andrew Solomon speak about his book Far from the Tree – when parents have a child that has some kind of difference from them, and they struggle not to see that difference as a problem or something that needs to be fixed. I found his ideas fascinating – the relationship between parents and children – and how love is far different than acceptance. And how we as adults (or children) can struggle with not feeling acceptance from family but can discover it in social acceptance. So, let's dig into that topic a bit today and I'll add in my own ideas as we go. The listener email is from a mental health professional who tried to hide from her own depression for several reasons – but isn't now. She's kind enough to attribute that to my book and podcast. I'll tell her story and share some of her thoughts and hope that for any of you out there who feel that you simply cannot talk about yourself or your struggles with any transparency, that you'll pause and think about that for a second. Vital Links: Click Here for the fabulous offer from Athletic Greens - now AG1 - with bonus product with your subscription! Click this link to try out some of the best CBD out there! Ozark Mountain Medicine's CBD products and get 10% off! You can hear more about this and many other topics by listening to my podcast, SelfWork with Dr. Margaret Rutherford. Subscribe to my website and receive my weekly newsletter including a blog post and podcast! If you'd like to join my FaceBook closed group, then click here and answer the membership questions! Welcome! My book entitled Perfectly Hidden Depression has been published and you can order here! Its message is specifically for those with a struggle with strong perfectionism which acts to mask underlying emotional pain. But the many self-help techniques described can be used by everyone who chooses to begin to address emotions long hidden away that are clouding and sabotaging your current life. And it's available in paperback, eBook or as an audiobook! And there's another way to send me a message! You can record by clicking below and ask your question or make a comment. You'll have 90 seconds to do so and that time goes quickly. By recording, you're giving SelfWork (and me) permission to use your voice on the podcast. I'll look forward to hearing from you! Andrew Solomon's interview with Big Think on the difference between love and acceptance interview with Dr. Adam Hill here on SelfWork!
There are an infinite number of ways to be a happy family, and just as many ways to be an unhappy one, says Andrew Solomon. This hour, the author and psychologist discusses modern family dynamics — and how families can find joy even when life gets complicated.
Monica and Liz are all synced up in episode 9 (out of 10) of Race to 35. The two are feeling unexpectedly sad as this process comes to an end. They have resigned to the idea that their follicles are players and that they, the coaches, can only do so much. Liz re-visits trauma from her synchronized swimming days and talks about the time she interviewed for Anna Wintour. L & M chat with Andrew Solomon (Pulitzer Prize finalist author of Far from the Tree: Parents, Children and the Search for Identity and The Noonday Demon: An Atlas of Depression) about expanding the notion of the nuclear family, choosing surrogacy, his personal story of picking an egg donor and his experience interviewing polyamorous couples and parents of psychopaths. He, also, shares two new terms with the ladies: "supermarket people" and "the good enough mother".