At-Home Coronavirus Tests Are Inaccessible to Blind People

With visual cues and complex steps, at-home coronavirus tests are often inaccessible to blind people. But some low- and high-tech workarounds could help.Christy Smith has never been tested for the coronavirus. As a blind person, she can’t drive to testing sites near her home in St. Louis, and they are too far away for her to walk. Alternative options — public transportation, ride share apps or having a friend drive her to a test site — would put others at risk for exposure.The rapid tests that millions of other people are taking at home, which require precisely plunking liquid drops into tiny spaces and have no Braille guides, are also inaccessible to Ms. Smith.Many people who are blind or have limited vision are not being tested as often as they would like — and some are staying isolated because testing is too difficult.“Not all of us have access to somebody sighted to help with things on a regular basis,” Ms. Smith said. “It’s kind of a mix of frustration and just feeling a bit helpless,” she added.When Ms. Smith’s husband, who is also blind, fell sick with a sore throat, stuffy nose and fever last fall, both of them isolated at home until his symptoms disappeared. They never found out what pathogen caused the infection.Some blind people manage to take at-home tests with the help of video call apps, like Be My Eyes and Aira. These services pair blind individuals with a sighted person who can describe their surroundings and guide them through a test, step by step.But these interactions are difficult, and not everyone who is blind owns a smartphone or is able to use a smartphone. What’s more, relying on others can erode a blind person’s privacy and independence.“It’s your personal health information,” said Martin Wingfield, the head of brand at the Royal National Institute of Blind People in Britain. “You should be the first to know.”Mr. Wingfield is part of a team that created a home pregnancy test that delivers results through raised bumps that can be felt by a blind person. The prototype uses a battery-operated motor that transforms chemical changes on a strip into raised bumps.Known as a lateral flow assay, it is the same type of test used to detect the coronavirus at home. So in theory, the institute’s prototype could be modified to make at-home coronavirus tests more accessible, Mr. Wingfield said. The cost of so-called tactile tests would be roughly $20 to $30, he said, though manufacturers might be able to make them for less.Another way to deliver test results could be through a change in smell or temperature, according to Hoby Wedler, a blind chemist and entrepreneur. Currently, most at-home tests use substances that change color after a chemical reaction. But “there are all sorts of things we can have these indicators do other than change color,” he said.Although a change in scent might not be useful for Covid patients, who often lose their sense of smell, Dr. Wedler argued that other types of at-home tests could be made more accessible through concepts like this.Hoby Wedler, a chemist and entrepreneur, has spent his life as an advocate for the blind. He believes new science could employ temperature or smell changes to make coronavirus tests more accessible.Bryan Meltz for The New York TimesCoronavirus tests can be tricky to carry out. Many require the user to dispense liquid into small holes and not touch the testing strip.“Blind people do most of what they do using touch in some way,” said Kim Charlson, the immediate past president of the American Council of the Blind. “Even guiding the swab into the tube without touching something or touching it can be very difficult, even for people who have been blind for a long time and are pretty confident.”Ms. Charlson has worked with health agencies to create more walk-up test site options, and she is now asking manufacturers to make more accessible home tests.The Coronavirus Pandemic: Key Things to KnowCard 1 of 6The global surge.

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‘The Music Man’ Once Had a Disabled Character. Then He Was Erased.

At the urging of producers, Meredith Willson cut a boy in a wheelchair from the early scripts for his 1957 musical. A look back shows what was lost.Many know Meredith Willson’s 1957 Broadway musical, “The Music Man,” as a light comedy centered on a cheeky scam artist who pretends to be a musician and sells the idea of starting a boys’ band to a small town in Iowa. The show is being revived on Broadway starring Hugh Jackman and Sutton Foster, and will begin performances this month.But several newly recognized drafts of the musical, written between 1954 and 1957, show that originally, the story focused more on the town’s persecution of a boy in a wheelchair — carrying a much more serious message than the final draft. At the time, children with disabilities were routinely institutionalized in horrid conditions and denied an education.In the version that debuted in 1957, the only character that doesn’t fall for the scheme is Marian Paroo, a well-read single woman who has a shy younger brother with a lisp, named Winthrop. But the con man, Harold Hill, manages to charm Marian and wins her over in part by being kind to Winthrop and including him in the band.In the earlier drafts, Marian’s younger brother was a character named Jim Paroo, a boy in a wheelchair who, in some versions of the show, has limited use of his arms and could not speak. Wherever Jim goes, townspeople want to lock him up, and in some versions, this drives him to hide and live in the school basement instead of at home.Then, Harold comes along and challenges the community’s assumptions about Jim by bringing him into the band and finding an instrument he’s capable of playing with his limited range of motion. An early title for the show, “The Silver Triangle,” highlights Jim’s instrument of choice and contribution to the band.“I think that Jim was very much at the heart of the show,” said Dominic Broomfield-McHugh, a musicology professor at the University of Sheffield in England who discovered many of the earlier drafts in 2013 at the Great American Songbook Foundation in Indiana. These discoveries were published in May in Broomfield-McHugh’s new book, “The Big Parade: Meredith Willson’s Musicals from ‘The Music Man’ to ‘1491.’” The book explores the musical’s journey from “The Silver Triangle” to “The Music Man” we know today — and has a chapter devoted to the various early drafts of the show.“When you read the first draft, it feels quite thin until you get to the scenes with Jim or about Jim, and suddenly it becomes very dramatic and serious,” he said. “I still feel astonished when I look at it.”Most of the songs and scenes in earlier drafts are also significantly different, according to Broomfield-McHugh. In one deleted song, Jim, who is nonverbal in this version of the show, starts to sing onstage alone.“What Willson was trying to do was to sort of say, even though he can’t physically speak, he has all these thoughts and ideas going around in his head,” Broomfield-McHugh said.Though Willson’s writing of disability was sometimes gimmicky in ways that could now be seen as offensive — in one scene, music inspires Jim to stand up for the first time — Broomfield-McHugh believes that the playwright was trying to spark a conversation about how people with disabilities were treated at the time.He found evidence that the playwright had visited organizations for disabled children but couldn’t find any other personal reasons that Willson may have had for writing about this issue.Just 10 months before the show opened, Willson dropped the character of Jim, replacing him with Winthrop at the urging of producers who felt there was no place for serious representations of disability onstage.“But I sense such a frustration in him that he really, really tried for years to make it work like this,” Broomfield-McHugh said.One memo urged Willson to change the character, stating that “physical disability in a child is impossible to view in any terms but pity and sentiment, the problem is to find some other form of disability besides physical.” The memo is undated and unsigned, but Broomfield-McHugh believes it was written in early 1957 by an employee of a producer. He found it in Wisconsin Historical Society archives, tucked in the back of a script that belonged to the producer Kermit Bloomgarden, who took over production of the show in 1957.A 1955 letter from the playwrights Jerome Lawrence and Robert E. Lee.The Great American Songbook FoundationAnother letter to Willson, written in 1955 by the playwrights Jerome Lawrence and Robert E. Lee, says, “The easy solution is to dump Jim Paroo,” but that doing so “might conceivably reduce a major work to the dimension of mere entertainment.”Today, audiences can more regularly see disabled actors onstage thanks to efforts by small theater companies like The Apothetae, which produces works centered on the disabled experience; and Theater Breaking Through Barriers, an Off Broadway organization that regularly casts actors with disabilities.But on Broadway, which can elevate shows into mainstream commercial hits, authentic representations of disability are still few and far between, said Talleri A. McRae, a founder of National Disability Theater.There have been some successes. Ali Stroker made history in 2019 as the first actor in a wheelchair to win a Tony Award for her role as a flirty fiancée, Ado Annie, in ‘Oklahoma!’; Madison Ferris, who has muscular dystrophy and uses a wheelchair, played Laura in a 2017 production of “The Glass Menagerie.” There was also the casting of a disabled actor in the role of Tiny Tim in “A Christmas Carol” in 2019; a 2015 revival of “Spring Awakening” by Deaf West Theater, which featured deaf and hearing actors side by side; as well as Martyna Majok’s Pulitzer-winning 2017 Off Broadway play, “Cost of Living,” about people with disabilities.Even with this progress, many disabled characters are not written in well-rounded ways, and actors without disabilities are often cast in these roles, McRae said.To her knowledge, the character of Nessarose in “Wicked” — who uses a wheelchair — has never been played by a disabled actress on Broadway, and the same was true for the character of Crutchie, who uses a crutch in the show “Newsies.”“Look how far we haven’t come,” said Gregg Mozgala, an actor with cerebral palsy and the founder and artistic director of the Apothetae. “Or how far we have yet to go.”Part of the problem is inaccessibility for acting training programs, said Mozgala, who is also the director of inclusion for the Queens Theater’s program Theater for All, which helps support and train disabled playwrights and actors. In his own acting program at the Boston University School for the Arts, he was the only person who identified as disabled and said many actors with disabilities have been told to sit out of certain classes, such as movement classes, because professors felt uncomfortable teaching students with disabilities.Another barrier is the perception of audiences. Nicholas Viselli, the artistic director of Theater Breaking Through Barriers, said audiences still feel uncomfortable watching disabled actors or characters onstage. For the plays he stages, he said he often receives donations from people who say they think the work is important but don’t want to come see it.“When you advertise disability, it becomes a turnoff,” Viselli said. “People are like, ‘I’ll feel bad for them. It will perhaps diminish my experience.’”In the end, the version of “The Music Man” without Jim was a hit; it won five Tony Awards, including best musical, ran for 1,375 performances and was adapted into an Oscar-winning movie in 1962.“The Music Man” has since been criticized for making light of its con artist’s problematic, predatory behavior, such as a scene in which he follows Marian home and tries multiple times to seduce her.The legacy of “The Music Man” may have been different if Willson’s original vision had made it onto the Broadway stage in a way that authentically represented people with disabilities. Many of the stigmas and barriers it tried to confront still persist, according to Penny Pun, the managing director of the National Disability Theater.“A lot of these works are being put down before they even see the light of day,” Pun said. “So how do we know if they have mainstream appeal? They never get a chance.”

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Seeing a Future for Astronauts With Disabilities on a Zero-Gravity Airplane Flight

People with different types of disabilities tested their skills and technologies on a research flight with the goal of proving that they can safely go to space.Eric Ingram typically moves through the world on his wheelchair. The 31-year-old chief executive of SCOUT Inc., a smart satellite components company, was born with Freeman-Sheldon Syndrome, a rare condition that affects his joints and blocked him from his dream of becoming an astronaut. He applied and was rejected, twice.But onboard a special airplane flight this week, he spun effortlessly through the air, touching nothing. Moving around, he found, was easier in the simulated zero-gravity environment where he needed so few tools to help.While simulating lunar gravity on the flight — which is about one-sixth of Earth’s — he discovered something even more surprising: for the first time in his life, he could stand up.“It was legitimately weird,” he said. “Just the act of standing was probably almost as alien to me as floating in zero gravity.”He was one of 12 disabled passengers who swam through the air aboard a parabolic flight in Southern California last Sunday in an experiment testing how people with disabilities fare in a zero-gravity environment. Parabolic flights, which fly within Earth’s atmosphere in alternating arcs, allow passengers to experience zero gravity on the upward arcs for repeated short bursts, and are a regular part of training for astronauts.The flight was organized by AstroAccess, a nonprofit initiative that aims to make spaceflight accessible to to all. Although about 600 people have been to space since the beginning of human spaceflight in the 1960s, NASA and other space agencies have long restricted the job of astronaut to a minuscule slice of humanity. The American agency initially only selected white, physically fit men to be astronauts and even when the agency broadened its criteria, it still only chose people that met certain physical requirements.This blocked the path to space for many with disabilities, overlooking arguments that disabled people could make excellent astronauts in some cases.But the rise of private spaceflight, funded by billionaires with the support of government space agencies, is creating the possibility of allowing a much wider and more diverse pool of people to make trips to the edge of space and beyond. And those with disabilities are aiming to be included.Eric Ingram, who typically gets around in a wheelchair and who has a condition that has prevented him from becoming an astronaut, on the flight. “It was legitimately weird,” he said.Al Powers/AstroAccess/Zero G CorporationThe flight’s passengers, from left to right, back row, Mary Cooper, Cheri Wells-Jensen, Eric Shear, Apurva Varia, Sina Bahram, Zuby Onwuta, Mona Minkara, Viktoria Modesta; and front row, Sawyer Rosenstein, Dana Bolles, Mr. Ingram and Ms. Mazyck.Al Powers/AstroAccess/Zero G CorporationThe participants in Sunday’s AstroAccess flight argue that accessibility issues must be considered now — at the advent of private space travel — rather than later, because retrofitting equipment to be accessible would take more time and money.The Federal Aviation Administration is prohibited from creating safety regulations for private spaceflights until October 2023. Initiatives like AstroAccess are aiming to guide the way that government agencies think about accessibility on spaceflights.“It’s crucial that we’re able to get out ahead of that regulatory process and prevent misinformation or lack of information or lack of data from making bad regulation that would prevent someone with disability flying on one of these trips,” Mr. Ingram said.The group also hopes that making everything accessible from the get-go could lead to new space innovations that are helpful for everyone, regardless of disability.For example, Sawyer Rosenstein, another AstroAccess passenger, is quick to point out how the lightweight metal alloys used in his wheelchair are a byproduct of NASA innovations. Mr. Rosenstein, 27, has been paralyzed from the waist down since an injury in middle school.Barred from space itself, Mr. Rosenstein became a journalist who often reports on space, including for a podcast, Talking Space.During Sunday’s flight. Mr. Rosenstein wore a specially modified flight suit with a strap he could grab to bend his knees and maneuver his legs.“I was in control of myself and my whole body,” Mr. Rosenstein said. “It’s almost indescribable to have that freedom after having it taken away for so long.”He also found he was more flexible in zero gravity, where he could finally test his full range of motion. And the chronic pain he usually experiences throughout his body disappeared during the flight, he said. Like Mr. Ingram, he also could stand up on his own. They both suggested that their experiences signal that zero gravity or reduced gravity could have potential therapeutic applications.With just a few modifications for each type of disability, Ann Kapusta, AstroAccess’s mission and communications director, said the dozen participants in the flight had a roughly 90 percent success rate getting back to their seats after 15 tests — 12 in zero gravity, two that mimicked lunar gravity and one that mimicked Martian gravity.AstroAccess conducted these tests — each lasting 20 to 30 seconds — to ensure that people with disabilities can go on a suborbital flight, like the one Jeff Bezos took in October, and safely get into their seats in the limited time before re-entry. This is typical training for suborbital flights, but not for orbital flights, which don’t have the same time crunch before re-entry.The physicist Stephen Hawking during a parabolic flight by the Zero Gravity Corporation in 2007.Steve Boxall/Zero Gravity CorporationHayley Arceneaux, upside-down, with the rest of the SpaceX Inspiration4 crew, became the first person to travel into orbit with a prosthetic last month.Spacex, via ReutersThe relative ease of the flight surprised some on the team, including Tim Bailey, the executive director of Yuri’s Night, a nonprofit organization focused on space education that sponsors AstroAccess. At first, he said he was concerned that people with disabilities were more fragile and would require extra medical precautions.“My biggest takeaway from this is my initial reaction of, ‘Oh my goodness, this is going to be hard,’ was wrong,” he said. “They didn’t need a lot of extra stuff.”But moving around the plane was not without some challenges, said Centra Mazyck, 45, who was injured and became partially paralyzed while serving as a member of the U.S. Army’s 82nd Airborne Division.“It’s very hard because it’s like you’re floating, you’re light as a feather,” she said. “You don’t know your strengths or your weaknesses.”Sunday’s parabolic flight was reminiscent of one in 2007 with Stephen Hawking, the physicist, who had amyotrophic lateral sclerosis, or A.L.S. But unlike Dr. Hawking’s flight, this one was geared toward researching the ability of disabled people to function independently in space and developing tools they could use to do so.In addition to modified spacesuits for mobility impaired passengers, researchers tested special lighting systems for deaf passengers and Braille and navigational devices for blind passengers.To navigate the shuttle as a blind person, Mona Minkara, 33, tested an ultrasonic device and a haptic, or vibrating, device, both of which signaled her as she approached the plane’s walls and other objects. But the most helpful device, she said, was the simplest: an extendable cane.“What was surprising to me is at some points, I knew exactly where I was and how I was facing,” she said.Dr. Minkara, a bioengineer at Northeastern University in Boston, pointed out that making spacecraft navigable for blind people would also help keep other astronauts safe if the lights go out during a spacecraft emergency.Some on Sunday’s flight once dreamed of becoming professional astronauts, and hope this research could open the door for other disabled people to get the job.The European Space Agency announced this year that it is accepting astronaut applications from those with leg amputations or who are especially short, and hopes to expand to include more types of disabilities in the future. Courtney Beasley, a spokeswoman for NASA, said the American agency is not currently considering changing its selection criteria.Some private space companies’ rules are more forgiving than those of government agencies. Although SpaceX did not respond to requests for comment, Hayley Arceneaux became the first person with a prosthetic to travel to orbit in September during the Inspiration4 flight aboard the company’s Crew Dragon capsule.Axiom Space, which is booking flights on SpaceX’s vehicle to the International Space Station, and Virgin Galactic, which flies a suborbital space plane, do not have a list of disqualifying conditions for astronauts, and say they consider accommodations on a case-by-case basis.Dr. Tarah Castleberry, the chief medical officer of Virgin Galactic, said the company will conduct medical screenings for each astronaut to ensure safety and is currently considering flying people who have prosthetics, hearing impairments, paralysis and other medical conditions and physical disabilities.Mona Minkara, who is blind, in zero gravity. She tested an ultrasonic device and a haptic, or vibrating, device, both of which signaled her as she approached the plane’s walls and certain objects.Al Powers/AstroAccess/Zero G CorporationDazzled by a space shuttle launch when he was in high school, Apurva Varia wrote to NASA to ask to apply to be an astronaut. NASA wrote back to say he could not, because he was deaf.Al Powers/AstroAccess/Zero G CorporationBlue Origin, the company owned by Jeff Bezos, the founder of Amazon, said in a statement that passengers must meet its own list of functional requirements that may exclude blind, deaf or mobility-impaired individuals from flying.Apurva Varia, 48, is deaf and one of the people who would continue to be excluded by such rules.“Space organizations told us that we can’t go to space, but why? Show me proof,” he said.In ninth grade, Mr. Varia recalls watching a space shuttle launch on TV. The channel didn’t have closed captions, so Mr. Varia didn’t understand what the shuttle was, or why people were sitting inside wearing orange suits. When the countdown hit zero, he said he was amazed to see it blast into the sky and disappear.Soon afterward, Mr. Varia wrote a letter to NASA asking if he could apply to be an astronaut. He got a reply saying that NASA couldn’t accept deaf astronauts at the time.Mr. Varia went on to earn advanced engineering degrees and has worked for NASA for two decades to direct space missions and help design propulsion systems for satellites.On Sunday’s flight, he got a little closer to his dream. He found himself bumping into the walls and ceilings as he tried to sign in American Sign Language and attempted drinking a big, floating bubble of water, which splashed on his face.“It was an out-of-this-world experience,” he said. “I hope to go to space someday.”

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