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    Should Famous People Be Telling Us This Much About Their Illnesses?

    For some celebrities, revealing all is part of the product. For others, it looks like a deeply unpleasant chore.This past summer, Celine Dion manufactured a breathtaking cultural moment. It was at the opening ceremony of the Paris Olympics, just after a long, daffy and highly maximalist buildup to the lighting of the Olympic cauldron. Suddenly, there she was, standing on a terrace of the twinkling Eiffel Tower in a scintillant Dior gown. As she sang, a swell of both applause and what sounded like a collective moan of pleasure rose from the audience. Celine Dion was alive and singing. And if you didn’t cry, it could only be because you didn’t know.It was hard not to know. A few weeks before the Olympics came the release of “I Am: Celine Dion,” a well-publicized documentary that took viewers inside what had become of her life since she became largely housebound with stiff-person syndrome — an exceedingly rare disorder that, in Dion’s case, causes terrifying whole-body spasms so severe that they can break bones. Anyone who has watched “I Am” knows what these crises look like, because Dion allowed herself to be filmed during one of them, for 10 minutes, her body frozen in agonizing contortions. By that point, we were already familiar with Dion’s universe of deep illness; we’d seen her holed up in her Las Vegas compound, surrounded by doctors, unable to walk properly, unable to sing properly, often supine, her body distended, her skin raw. In terms of radical transparency, “I Am” is a milestone: a completely new standard for Bravely Baring All.Dion is far from the only celebrity to have invited the public to witness life with a serious illness. Lady Gaga’s 2017 documentary, “Gaga: Five Foot Two,” revealed the star’s daily struggle with fibromyalgia, and in last year’s “Still,” Michael J. Fox — a groundbreaking figure in celebrity-illness transparency — further tugged down the curtain on how severe his Parkinson’s disease has become. Selma Blair, who spent a portion of her career hiding symptoms, eventually revealed a diagnosis of M.S. and then began posting intensely personal bedside updates on social media. Last year an issue of British Vogue had her on the cover, in a skinny beige column of a dress, patent pumps and a cane, with a headline announcing her as “Dynamic, Daring & Disabled.”For fans, these narratives can create a kind of whiplashing feelings roller coaster. You see Lady Gaga diminished and sobbing because of unrelenting full-body pain — and then, soon enough, suspended from the top of a Houston stadium for a Super Bowl halftime performance. You witness Celine Dion in a heartbreaking, horrible fit and then belting out an Edith Piaf song from such great heights. The intention here, surely, is to show that such stars are only human, that their lives and bodies have the same potential for suffering as ours. But the insane highs and pitiable lows these stories offer us feel almost inhumanly extreme. And in watching them, I began wondering if the stars in them didn’t end up feeling caged by the seemingly necessary Hollywood framing in which inspiration and drama need to take precedence over nuance and open-endedness. Dion and Gaga have to adapt to illnesses for which there is no known cure. So what do they do now? The answer is synonymous with their job: perform.Middleton’s video just feels so weird.We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

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    Ford and Mellon Foundations Name 2024 Disability Futures Fellows

    The 20 recipients, including a Broadway composer, a Marvel video game voice actress and a three-time Pushcart Prize-nominated poet, are the initiative’s final cohort.The Ford and Andrew W. Mellon Foundations on Wednesday named the 2024 Disability Futures Fellows — the latest class of disabled writers, filmmakers, musicians and other creative artists who will receive unrestricted $50,000 awards.This year’s recipients include Gaelynn Lea, a folk artist and disability rights activist; Natasha Ofili, an actress and writer who in 2020 became one of the first Black deaf actors to portray a video game character — Hailey Cooper — in Marvel’s Spider-Man: Miles Morales; Warren Snipe, a.k.a. Wawa, a deaf rapper and actor who performed in sign language at the 2022 Super Bowl; and Kay Ulanday Barrett, a three-time Pushcart Prize-nominated poet and essayist whose work focuses on queer, transgender people of color.Lea said she almost missed an email telling her she got the award. “Because the email said, ‘We’re excited to offer you $50,000,’ it went to my spam,” Lea, 40, said in an interview. (She later received a follow-up email.)“It’s very validating that I’m doing this stuff I really care about, and now it’s being recognized,” added Lea, who won NPR Music’s Tiny Desk Contest in 2016, and composed and performed original music for a Broadway production of “Macbeth” starring Daniel Craig and Ruth Negga. Lea plans to use the award to fund the writing of a memoir to be published next year.The initiative, which is administered by United States Artists, named its inaugural class of fellows in 2020, with the goal of increasing the visibility of disabled artists and elevating their voices. (About one in four adults in the United States has a disability, according to the Centers for Disease Control and Prevention.) The second class was announced in 2022, and this is the last cohort in the program. The fellowship supports people at all stages of their careers.Elizabeth Alexander, the president of the Mellon Foundation, said in a statement that the program reflected the foundation’s support of the “work, experiences and visions of disabled artists — both in their individual practices and in the collective power they wield in the arts at large.”We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

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    What if the Disabled Characters Were Just Going About Their Day?

    Madison Ferris and Danny J. Gomez star in the meet-cute “All of Me” — proof that depictions of disability onstage don’t have to be “a buzz kill,” as Ferris puts it.A bizarre thing happens when the actors Madison Ferris and Danny J. Gomez are out and about in public together, using mobility aids to get around: she a scooter, he a wheelchair. Inevitably, she said, strangers approach, presuming that the two are somehow in distress.“People will be like, ‘Are you OK? What’s going on?’” Ferris said the other afternoon at the Pershing Square Signature Center in Manhattan, where they are starring in the New Group’s Off Broadway production of Laura Winters’s romantic comedy, “All of Me.”And if several wheelchair users should roll down the street together, Gomez said, “then it’s like the circus is in town.” Such as the night a few friends of his from the Los Angeles dance team the Rollettes came to the play, and he and Ferris left with them afterward.“Everywhere we went,” he said, “just stares, left and right.”To Gomez, who was paralyzed from the waist down in a mountain-biking accident in 2016, that kind of othering underscores the need for theater, television and film to depict more disabled people, and do it more matter-of-factly.“Then it wouldn’t be so weird in real life,” he added. “It would just be people going about their day. Like, I don’t stare at you when you’re with your group of friends.”Not that “All of Me” is intended as pedagogical, but he does think it could help.In “All of Me,” Ferris and Gomez play characters who rely on electronic text-to-speech devices to talk. Kyra Sedgwick, left, plays Ferris’s mother.Richard Termine for The New York TimesWe are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

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    New ‘Richard III’ Raises an Old Question: Who Should Wear the Crown?

    A production at the Shakespeare’s Globe theater faced criticism because a nondisabled actor plays the scheming king. But disputes like these miss the point, our critic writes.When Michelle Terry, the artistic director at Shakespeare’s Globe theater in London, decided to put on a production of “Richard III” with a feminist twist, she probably didn’t expect accusations of discrimination. But that’s what she got. The run-up to the show’s premiere on Tuesday was overshadowed by a controversy over the fact that Terry had cast herself as villainous title character despite not having a physical disability.The play depicts a set of murderous machinations whereby Richard, Duke of Gloucester, achieves his ascent to the English throne in 1483, and the events leading to his demise at the hands of Henry, Earl of Richmond, who would become Henry VII, the first Tudor king. Richard, described as “deformed” in the play’s opening lines, has traditionally been portrayed as a hunchback — almost always by able-bodied actors, with only a few notable exceptions in recent years. (In 2022 Arthur Hughes, who has radial dysplasia, became the first disabled actor to play Richard for the Royal Shakespeare Company.)When Shakespeare’s Globe announced its casting earlier this year, the Disabled Artists Alliance, a British organization, published an open letter condemning it as “offensive and distasteful,” since Richard’s “disabled identity is imbued and integral to all corners of the script.”Shakespeare’s play, the statement added, “cannot be successfully performed with a non-physically-disabled actor at the helm.” The Globe issued a robust response pointing out that Richard would not be played as disabled in this production, and adding that, in any case, “the Shakespearean canon is based on a foundation of anti-literalism and therefore all artists should have the right to play all parts.”The Globe pushed back strongly against organizations like the Disabled Artists Alliance, which said Richard should be played by a disabled actor.Marc BrennerUntil relatively recently, it was uncontroversial to have a nondisabled actor play a disabled role. Dustin Hoffman’s portrayal of an autistic character in “Rain Man” and Daniel Day-Lewis’s protagonist with cerebral palsy in “My Left Foot” both won best actor prizes at the Academy Awards in the late 1980s. These days, the practice is increasingly contentious: Jake Gyllenhaal received blowback when he played an amputee in “Stronger” (2017), as did Dwayne Johnson in the action movie “Skyscraper” (2018); Bryan Cranston was similarly criticized for playing a quadriplegic in “The Upside” (2019).We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

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    Pedal Steel Noah’s Covers Charm Fans Online. Up Next: His Own Songs.

    This 16-year-old from Austin, Texas, plays New Wave and post-punk hits with his brother and dog beside him. This week, his first EP, “Texas Madness,” comes out.Like many American teenagers, Noah Faulkner, 16, is obsessed with music. He’ll spend hours going down rabbit holes, listening to every note played by his favorite artists and studying new discoveries. He recently came out of a monthslong deep dive on Clarence Ashley, a banjo player who recorded during the Great Depression and “makes me feel like I’m an old man,” Faulkner said. Ashley’s music “feels very spooky, and I imagine it’s like an abandoned place somewhere.”Unlike most teenagers, Faulkner is translating these influences into a dedicated music career. Using the handle Pedal Steel Noah, he posts daily covers of ’80s New Wave and post-punk hits on Instagram and TikTok, interpreting the work of acts like the Smiths and Tears for Fears on one of the hardest instruments to master. Along the way, he’s made fans of Neko Case, Big Thief, Grandaddy’s Jason Lytle and scores of others drawn to his emotive playing and charming setup: a big Texas flag in the background, his brother, Nate, 13, on bass and a shaggy Aussiedoodle panting along.Faulkner’s interest in pedal steel stems from an early plunge into country music. “I was listening to George Strait when I wanted to listen to something that’s cheerful and faithful,” he said. Eli Durst for The New York TimesIn March, the brothers and their father, Jay, played several showcases during the South by Southwest festival in their hometown and opened for the Black Keys’ keynote address. Dressed in a Western shirt, black cowboy hat and the colorful Crocs that have become his signature footwear, Pedal Steel Noah put a Texas stamp on songs by Duran Duran and the Cocteau Twins.“It was amazing,” he said via video call from the dinner table, his family gathered around him, “but it was exhausting. Hopefully, I can give myself a reward of a party for my friends.” On Monday, he’s taking the next step in his young career, releasing “Texas Madness,” an EP that includes three covers and two original tracks.

    View this post on Instagram A post shared by Noah Faulkner (@pedalsteelnoah) We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

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    Cola Boyy, Indie Singer and Disability Activist, Dies at 34

    Cola Boyy, whose real name was Matthew Urango, sang and produced his own brand of disco music. Born with spina bifida, he had been a vocal advocate for people with disabilities.Cola Boyy, the California singer-songwriter who collaborated with MGMT and the Avalanches and advocated for people with disabilities, has died. He was 34.Cola Boyy, who was born Matthew Urango, died Sunday at his home in Oxnard, his mother, Lisa Urango, said. No cause was given.A self-described “disabled disco innovator,” Mr. Urango assembled diverse instruments to create a brimming mixture of funky rhythm and colorful sounds that accompanied his alluring voice, a striking balance of silk and chirp.Mr. Urango was born with spina bifida, kyphosis and scoliosis and had used a prosthetic leg since he was 2.As Cola Boyy, he released a debut 2021 album, “Prosthetic Boombox,” that garnered millions of streams on Spotify and other platforms and boasted lively and introspective tunes such as “Don’t Forget Your Neighborhood,” a collaboration with the indie pop group the Avalanches.He used his burgeoning platform as an artist to speak out for social causes, including those related to people with disabilities.We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

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    Livestreaming ‘Made All the Difference’ for Some Disabled Art Lovers

    When shuttered venues embraced streaming during the pandemic, the arts became more accessible. With live performance back, and streams dwindling, many feel forgotten.For Mollie Gathro, live theater was a once-a-year indulgence if the stars aligned perfectly.Gathro has degenerative disc disease and Ehlers-Danlos syndrome, resulting in joint pain, weakness and loss of mobility. Because of her disabilities, going to a show meant having to secure accessible seating after hourslong phone calls with her “nemesis,” Ticketmaster; finding a friend to drive her or arranging other transportation; and hoping her body would cooperate enough for her to actually go out.But when live performance was brought to a halt three years ago by the coronavirus pandemic, and presenters turned to streaming in an effort to keep reaching audiences, the playing field was suddenly leveled for arts lovers like Gathro.From her home in West Springfield, Mass., Gathro suddenly had access to the same offerings as everyone else, watching streams of Gore Vidal’s drama “The Best Man” and of a Guster concert at the Red Rocks Amphitheater in Colorado. For a while, it seemed, everything was online: performances by the Berlin State Opera or the Philadelphia Orchestra; dances by choreographers like Alonzo King and a New York City Ballet Spring Gala directed by Sofia Coppola; blockbuster movies that were released to streaming services at the same time they hit multiplexes; even the latest installment of Richard Nelson’s acclaimed cycle of plays about the Apple family for the Public Theater was streamed live.“I was overjoyed, but there was also this tentative feeling like waiting for the other shoe to drop because they could take the accessibility away just as easily as they gave it,” Gathro, 35, said, “which feels like is exactly what is happening.”It is happening. With live performance now back, and some theaters and concert halls still struggling to bring back audiences, presenters have cut back on their streamed offerings — leaving many people with disabilities and chronic illnesses, who have been calling for better virtual access for decades, excluded again.While many presenters have cut back on streaming, there is still more available than there used to be. In September the San Francisco Opera streamed a performance of John Adams’ “Antony and Cleopatra” starring Amina Edris. Cory Weaver/San Francisco OperaLivestreaming “opened up the door and showed us what is possible,” said Celia Hughes, the executive director of Art Spark Texas, a nonprofit that aims to make the arts more inclusive and accessible. The door, she said, has begun to close again.Aimi Hamraie,​​ an associate professor of medicine, health and society at Vanderbilt University who studies disability access, said that the decisions to cut back on streaming options “were not made with disabled people in mind.”“We’ve all been shown that we already have the tools to create more accessible exhibitions and performances, so people can no longer say it’s not possible,” Hamraie said. “We all know that that’s not true.”One in four adults in the United States has some form of disability, according to the Centers for Disease Control and Prevention. But more than three decades after the passage of the Americans with Disabilities Act made it illegal to discriminate based on disability, advocates say that it remains difficult for many disabled people to navigate arts venues: gilded old theaters often have narrow aisles, cramped rows and stairs, while sleek modern spaces can be off-the-beaten-path or feature temporary seating on risers.To be sure, there are far more streaming options available now than there used to be. The San Francisco Opera has been livestreaming all of its productions this season, and last month the Paris Opera announced new streaming options. Second Stage Theater simulcast the last two weeks of its Broadway run of “Between Riverside and Crazy” and “Circle Jerk,” a Zoom play that became a finalist for the 2021 Pulitzer Prize for drama, returned for a hybrid run last summer for both live and streaming audiences. The Cleveland Orchestra has joined the growing number of classical ensembles streaming select performances. And this year’s Sundance Film Festival was held in person in Park City, Utah — but also online.Second Stage Theater simulcast the last two weeks of its Broadway run of “Between Riverside and Crazy.” From left to right: Stephen McKinley Henderson, Victor Almanzar, Common.Sara Krulwich/The New York TimesBut venues and producers have cut back on streaming for a number of reasons: the costs associated with equipment and the work required to film performances; contracts that call for paying artists and rights holders more money for streams; and fears that streams could provide more incentive for people to stay home rather than attend in person.Arts lovers with disabilities are feeling the loss.“It made all the difference because I felt like during the pandemic, I was allowed to be part of the world again, and then I just lost it,” said Dom Evans, 42, a hard-of-hearing filmmaker with spinal muscular atrophy, among other disabilities, and a co-creator of FilmDis, a group that monitors disability representation in the media.The recent experiments with streaming have raised questions of what counts as “live.” Some events are heavily produced and edited before they are made available online.“It’s better than nothing, but it’s not the same,” Phoebe Boag, 43, a music fan with myalgic encephalomyelitis, who lives in Scotland, said in an email interview. “When you’re watching a live performance at the same time as everyone else, you have the same anticipation leading up to the event, and there’s a sense of community and inclusion, knowing that you’re watching the performance alongside however many other people.”More venues are providing programming specifically for people with disabilities and their families. Moments, at Lincoln Center for the Performing Arts, for example, is geared toward people with dementia and their caregivers. “Our main goal is that everyone has choice, everyone can get access to what they want in ways that work best for them,” Miranda Hoffner, the associate director of accessibility at Lincoln Center, said.Moments, at Lincoln Center, is geared toward people with dementia and their caregivers. Ayami Goto and Takumi Miyake, of American Ballet Theater’s Studio Company, danced.Lawrence SumulongThese types of programs have been welcomed. But others say that presenters must do more to make all of their programming accessible.“We need arts programs that are fully integrated,” Evans, the filmmaker, said.Even as presenters have cut back on streaming options, many have stopped requiring proof of vaccination and masks — placing new barriers to attendance for some of the estimated seven million American adults who have compromised immune systems that make them more likely to get severely ill from Covid-19.“It’s easy to feel just like you’re farther and farther behind and not only forgotten, but just completely disregarded,” said Han Olliver, a 26-year-old freelance artist and writer with multiple chronic illnesses who would like more access to the arts. “And that’s really lonely.”Still, new opportunities have led to more connections for and among disabled people.Theater Breaking Through Barriers, an Off Broadway company that promotes the inclusion of disabled actors onstage, has presented more than 75 short plays since 2020 that have been designed to be performed virtually. Last fall, it streamed a series of plays, including some that were created on Zoom and others that were performed in front of live audiences. Nicholas Viselli, the company’s artistic director, said the goal is to make streaming more regular.There is an idea that “‘doing virtual stuff is not really theater,’ and I don’t agree with that,” Viselli said.“It’s not the same as being in the room and feeling the energy from the audience and the actors,” he said, “but it is when you have artists creating something in front of your eyes.”Gathro continues to take advantage of streaming options when she can from her home in West Springfield. But she hopes that more presenters will stream their work in the future.“I wish I always had options for livestreaming, for really everything, because I would,” Gathro said. “For me, it’s worth paying as much as I would pay to see it in person. The accessibility is just that much more helpful.” More

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    Lauren Spencer Is a Sex-Positive Disability Influencer

    Name: Lauren SpencerAge: 35Hometown: Stockton, Calif.Now Lives: In a two-bedroom, two-bathroom apartment in Los Angeles.Claim to Fame: Ms. Spencer, who goes by Lolo, is an actress, model and disability influencer who is best known for portraying the quick-witted, sex-positive freshman Jocelyn on “The Sex Lives of College Girls,” currently in its second season on HBO Max.“Jocelyn was the college version of myself,” she said. “I was partying all the time, having sex — maybe not as often as Jocelyn is, though.” Ms. Spencer, who has muscular dystrophy and uses a wheelchair, also createsvideos debunking disability myths and shares fashion and dating tips on Instagram and YouTube. “I wanted to create content that would answer that question and eventually dispel stereotypes about how disabled people live their lives,” she said.Big Break: Ms. Spencer started her YouTube channel, Sitting Pretty Lolo, shortly after graduating from California State University, Northridge in 2012. The channel caught the attention of a Tommy Hilfiger executive who hired her for a fashion campaign. With the help of an agent, she landed the lead role in “Give Me Liberty,” a 2019 independent film about Tracy, a disability advocate, and her relationship with a medical transport driver.“I’m just going to share my truth,” Ms. Spencer said. Carlos JaramilloLatest Project: She recently voiced Jazzy on “Firebuds,” a Disney Junior animated series about a team of first responders. Jazzy, who has spina bifida, uses a combination wheelchair and car. “It’s very important for kids to start learning about disability at a young age,” Ms. Spencer said. In September, she started Live Solo, an online resource that helps young adults with disabilities live independently. “I wanted to challenge myself to figure out how I could make a greater impact on the disabled community beyond me just talking in front of a camera,” Ms. Spencer said.Next Thing: Ms. Spencer will release her first book, “Access Your Drive & Enjoy the Ride,” in February. “My goal is not to inspire anyone,” she said. “I’m just going to share my truth — a different perspective on something that’s been misrepresented for so long.” But, she added, “if people get inspiration, that’s dope.”Dating With a Disability: Ms. Spencer, who is single, said her wheelchair isn’t quite the “no big deal” apparatus it is for her character Jocelyn. “The men I have dated or interacted with haven’t necessarily freaked out or been weird about anything,” she said. “But certain things they’ve either said or done made it feel they didn’t fully accept the fact that I had a disability.” More