Two years after Russian ban, 'taboo' hangs over disabled children denied U.S. adoption

From Radio Free Europe:

Vitaly (pictured) was abandoned at birth.

With Down syndrome and a life-threatening heart condition, the Russian orphan's prospects looked bleak.

Luck unexpectedly struck in October 2012, when an American couple visited him at his orphanage in Moscow. The couple, Jenny and Aaron Moyer, explained they wanted to become his parents and promised to come back for him soon.

"He almost died once, before the adoption process started, so we were very happy to find parents for him," says Alyona Sinkevich, who worked for the U.S. adoption agency that put the Moyers in touch with Vitaly.
Two years later, Vitaly, who is now 6, still lives in an orphanage.

He is one of 259 Russian children whose pending adoption by American families was terminated when Russia abruptly barred U.S. citizens from taking in Russian orphans.

The ban, signed by Russian President Vladimir Putin on December 28, 2012, left Vitaly with nothing more than a handful of family pictures and a broken promise.

The Moyers have filed an appeal with the European Court of Human Rights.

But the odds of their ever taking custody of Vitaly, whom they already consider their son, are extremely slim.

'The Law Is Absolutely Horrific'

The ban has sparked international outrage, with human rights advocates accusing Russian officials of sacrificing children for their political agenda.

Sinkevich says children like Vitaly stand "almost no chance" in Russia, where most orphanages are woefully ill-equipped and staff often untrained to care for children with special needs.

Vitaly was able to obtain a pacemaker only after the director of his first orphanage raised money from private donors.

Boris Altshuler, a leading children's right advocate, says Moscow made a "terrible mistake" by introducing the so-called Dima Yakovlev law -- named after a Russian-born toddler who died in 2008 after his adoptive American father accidentally left him in an overheated car.

"This law is absolutely horrific," says Altshuler, who heads the nongovernmental organization Children's Rights. "Our deputies and politicians couldn't care less about children."

The ban was instituted in retaliation for a U.S. law that placed sanctions on Russian officials believed to be implicated in the prison death of Russian whistleblowing lawyer Sergei Magnitsky.

The Russian government has encouraged its citizens to make up for the loss of U.S. adoptive families.
But while authorities have touted a rise in the number of domestic adoptions, Russians are still reluctant to take on children with special needs.

There are currently more than 600,000 orphans in Russia, every fourth a child with special needs or suffering from an illness.

A Taboo Subject

Until 2013, the United States had been the top destination for adopted Russian children. U.S. families have taken in more than 60,000 Russian orphans over the past two decades, many of them children with special needs.

Rights activists are also concerned about the secrecy surrounding the fate of orphans whose adoption in the United States was cut short by the ban.

Altshuler says he has almost no information on these children and suspects authorities of imposing a moratorium, effectively making discussion of the matter "taboo."

Sinkevich herself has been unable to find out where Vitaly is currently institutionalized.

"We fear for his life all the time, every day, because there were several occasions when his cardiostimulator stopped," she laments.

The director of Vitaly's former orphanage, the one who helped buy his pacemaker, confirmed that Vitaly is alive and well but said she could not disclose his whereabouts.

Sinkevich had been processing six adoptions by American families when Russia introduced the adoption ban. None of the six orphans made it to the United States.

According to information she was able to glean from orphanages, four of these children were placed with Russian families -- a success she attributes to intense media coverage in the wake of the ban.

The sixth orphan, a toddler with Down syndrome called Dmitry, remains in an orphanage.

'Buried In The Village Of Fedyakovo'

At least one child, also with Down syndrome, is reported to have died after being denied adoption in the United States.

That child, Daria, never met her prospective U.S. parents. The ban came even before they were able to visit her at her orphanage near the central Russian city of Nizhny Novgorod.

Russia officials have categorically dismissed reports that Daria died last year of a heart ailment.

Both volunteers and Daria's would-be American parents, however, have been cited as confirming her death.
"Doctors did everything in their power; she underwent several serious heart surgeries," says Veronika Genkina, a journalist based in Nizhny Novgorod who was briefed by local officials about the case.

"According to volunteers, her death took everyone by surprise. Dasha is buried in the village of Fedyakovo."
The director of Daria's orphanage declined to comment on the case.

Orphanage No. 13 in St. Petersburg is one of the rare institutions willing to share detailed information about children left behind by American families.

Four of the city's 33 children whose U.S. adoption was derailed two years ago came from this orphanage, which is pioneering new methods allowing more bonding between children and their caretakers.

Three of them have already been placed with new families in Russia.

The Lucky Ones

Yana, a girl with Down syndrome, was taken in by a Russian couple who had recently adopted another orphan with the same condition.

Svetlana, who was just a few months old when the Dima Yakovlev law took effect, was also able to find a new home in Russia after undergoing a liver transplant.

"Thanks to the fact that Sveta's story was made public, a Russian family came forward," says Maria Solodunova, a psychologist at the orphanage. "They adopted her after the operation and are now raising her alongside their own biological daughter."

Timofei, another toddler with Down syndrome, has also found a home.

Like Vitaly, he had already met with his prospective U.S. parents when the adoption ban struck.

"He had photos of this family. He liked to display them for visitors. He was happy to show his new family," remembers Solodunova. "Unfortunately, the new law stripped this family of any possibility to take this child into their home."

Footage of Timofei sadly leafing through the photographs of his American family was widely broadcast in Russia, where he was soon dubbed "The Boy With the Album."

Solodunova says this helped Timofei draw "a lucky ticket." His biological parents eventually decided to take him back, while keeping in close touch with the U.S. family that had planned to adopt him.

"This is a unique case when a child was able to find not just one family, but two," says Solodunova.

Butterfly Children

Little Nikolas has not been as lucky.

The 3-year-old suffers from epidermolysis bullosa, a severe skin disease that requires intense daily care. Young patients are also known as "butterfly children," in reference to the fragility of their skin.

"We considered the family that decided to adopt Nikolas shortly before this law as his only chance," says Solodunova. "This family had friends who adopted a child with epidermolysis bullosa from a Moscow orphanage, so it was a very well-informed decision on their part. Unfortunately, it fell through."

Nikolas remains at Orphanage No. 13.

With the Kremlin showing no easing adoption rules for U.S. families, Nikolas, Vitaly, and thousands of other children face lifetime institutionalization in Russia.

The Russian children's ombudsman, Pavel Astakhov, has actually urged the Kremlin to extend the ban to other countries.

Known for his staunch support of Putin, Astakhov has described the international adoption of Russian orphans as a "semi-legal scheme of exporting children."

"There's a Russian proverb that goes, 'The further away from the tsar, the safer your head,'" says children's rights activist Altshuler. "These toddlers, these disabled babies found themselves too close to the tsar, to big politics, and to the zeal of our deputies. They were so close that we will unlikely find out anything about them now."

British actor Mat Fraser: 'Someone had the balls to make a drama starring freaks'

From The Guardian:

“I have the face of a pretty lad. A handsome face. Could you imagine this mug on a normal body? I could have ruled the world.”

So opines Paul the Illustrated Seal Boy in American Horror Story: Freak Show, currently in its final weeks on FX in the US.

British actor Mat Fraser (pictured), relishing his first American screen role, as Paul, contemplates the question. “Well, yeah, I can imagine that, actually. I would have been a complete arsehole. Some people probably think I already am one.”

Taking a day off in his apartment in New Orleans, where American Horror Story is being shot, Fraser, 52, splits his time between New York and his hometown of London. He has enthusiastically delved into the artistic weft of his temporary home, though, performing in the Dirty Dime Peepshow, a local monthly burlesque revue, between on-set duties. “It’s a really great city for freaks,” he says, smiling.

It’s a freakishly warm December day, and Fraser – handsome face and all – is basking in the vindication of a long-awaited role. “I knew that if I could tread water, someone would have the balls to produce a big-budget drama starring freaks. I’ve always visualised it.”

The dreaming started early, with art winning out over delinquency for young Fraser – “There but for the grace of my disability go I,” he muses. With forays into music, edgy cabaret and, occasionally, British television, he forged an artistic path revelling in the power dynamics of his appearance. His disability – phocomelia due to his mother being prescribed the drug Thalidomide during pregnancy – endowed him with a persona: Seal Boy.

While working in the actual Coney Island Circus Side Show in 2006, Fraser met his now-wife, the American neo-burlesque performer Julie Atlas Muz. Their ongoing collaborative relationship helped him land the part of Paul. Fraser was spotted in New York in Beauty and the Beast, a racy reworking of the fairy tale that had already gained critical acclaim from a run at London’s Young Vic.

“A woman came based on these rave New York Times reviews,” says Fraser. “She called her friend, who was producing American Horror Story. I got a call to audition, which I did via my laptop, and was offered the job the next day. It’s one of those chance castings you don’t think really happens.”

Paul’s character was originally a lizard man, covered head to toe in tattoos. When Fraser brought with him the Seal Boy persona, they compromised, arriving at Paul the Illustrated Seal Boy.

“I fought against having tattoos on my face,” says Fraser. “My face conveys my emotions and I wanted to be recognised. I wanted people to be able to see me acting. To see me.”

Fraser suspects the “normal body” line was an empathetic leap by the writers: “If so, they were woefully wrong, but what can you expect from non-disabled writers?”

“I don’t blame them,” Fraser continues. “I wanted to do the lines. I’m not going to say, ‘I don’t think a disabled person would think that.’ I used to be like that. I’ve learned a lot about disability portrayal, and sometimes you have to let that stuff go. Yes, it’s important and in my own work I talk about it, but sometimes you just have to want to do the acting.”

Questions arose around the politics of casting able actors in freak show roles in American Horror Story. Fraser hears the arguments, but wants to evolve the discussion.

“You’re talking about using able actors to play disabled roles now? I was talking about this in 1997. I’m kind of done talking about it,” he says. Fraser also wants to get beyond trite narratives of overcoming disability. “I won’t do inspiration porn, I just won’t. Yes, we can discuss how difficult it is getting work as a disabled actor, but let’s talk about the acting and the work and the art, and not about if I was bullied as a teenager.”

Fraser sees American Horror Story as groundbreaking, particularly Paul’s portrayal as a two-timing lover. 

“It’s profound,” he says. “Giving storylines like that to a deformed person is radical. We’re the first disabled people on US TV, but this is a show about freaks, so they see me and think ‘good casting’. A world where if even your teeth are wrong you don’t get gigs? It’s a tough nut to crack.”

As filming wraps up, Fraser is cheerfully pragmatic. “Friends encouragingly tell me this is it for me, but I’ve had enough dips to know its likely I’ll be back covered in fake blood at Bethnal Green Working Men’s Club.”

Will his new profile inform future artistic directions? “There are some things I won’t do any more. I’m trying to obey the rules with the arched eyebrow of possibility and not the furrowed brow of cynical negative assumption. But you know what? Maybe some rules don’t apply to me. They’re rules of thumb. And you know what I haven’t got? Thumbs.”

Deaf students in Iowa test run new movie tech

From The Des Moines Register:

During a week when “The Interview” dominated most movie-related headlines, a different film had students from three Des Moines schools talking.

Members of the Deaf Kids Club — an after-school program for deaf and hearing-impaired students from Capitol View Elementary, Hiatt Middle School and East High School — took a trip to Jordan Creek’s Century 20 theaters to see “Big Hero 6.”

Taking in an afternoon movie may not be big news for most kids, but some new technology made the experience special for club members.

Students were given devices that displayed captions to help them follow the plot, which involves a group of animated superheroes assembled to fight a masked villain. Students with cochlear implants also could use neck loops that transmit sound to the implants.

“Many of our students have actually never been to a movie before, or if they have, they haven’t had that closed-caption access,” Polly Fullbright, dean of students for the deaf and hard of hearing program, said through an interpreter.

“Movies for a long time have been a bear in the deaf community. This is pretty new technology they set up, but finally they have devices that we can access any movie (with).”

The Deaf Kids Club meets once a month after school. “It’s an opportunity for the hard-of-hearing kids to socialize and have some time with friends after school,” Fullbright said.

The students were excited by the opportunity to use the new devices.

Sembetu Dalay, a fourth-grader at Capitol View Elementary, attended a movie last summer, but she said she was unable to follow along completely because of her hearing impairments. After discovering the captioning devices — available for all films shown at the Jordan Creek theater — she’s excited to attend more movies in the future.

“Students didn’t know that they could come to any movie, at any time at this theater, and now they know this,” Fullbright said. “They know how to ask for the closed-caption device, and they know what it looks like.”

Cooper Myers, 7, of Clive, attended the movie with his mother. Molly Myers was excited for her son to have the chance to use the new technology.

“We saw this before, so it will be interesting for him to see it and have the wording there, too,” Myers said. “They’re not getting all the input that other kids are getting, and this gives them that input visually.”

The captioning devices and neck loops for cochlear implants can be requested at the Century Theater box office.

The Wynnsong 16 theaters in Johnston offers captioning devices for select movies. It’s in the process of upgrading its sound-amplification headphones for hearing-impaired people.

Fridley Theatres, which has movie houses in Ankeny, Indianola and Pleasant Hill, offers sound-amplification headphones.

Oregon disability rights activist, filmmaker: 'We're not inspirational. We're just us.'

From The Oregonian:

On Saturday, two Portland women will debut a series of comedic shorts exploring disability identity and culture. "Very Special Episodes" is not your typical disability-themed film. There is no inspirational obstacle-overcoming. No swelling music. No feel-good moral.

"We're not inspirational," Caitlin Wood said. "We're just us."

The Oregonian spoke with Wood, a 32-year-old writer and disability activist (pictured). Wood grew up in Arkansas then moved to Portland in 2000 to attend Reed College. There, her life changed, she said, when she took a disabilities studies class. She learned about activists who fought for the passage of the ADA and for accessible buses.

She teamed up with filmmaker Cheryl Green, 40, to create the comedic films.

Tell me about the project, Criptiques on Film: Very Special Episodes.
 
It started as an anthology I edited of all-disabled authors. I wanted to expand on that project. I started working with Cheryl Green. We decided we wanted to do some films. We received a grant from RACC to make some short comedy disability films. The goal was to present disability in a normalizing way that you just don't see elsewhere. You don't see this kind of representation. It's not inspirational. It's not tragic. It's just us.

We're both disabled and very strongly into social justice. But this is not that. This is just about fun and comedy.

What portrayals of disability do you see elsewhere?

There is a huge dearth of disability portrayals on TV and in film. Only 1 percent of characters in 2014 prime time were disabled. I think about that statistic a lot and how that affects the psyche of disabled people when we are completely erased. When there are disabled characters, it tends to be very stereotypical and hackneyed portrayals. The person always has to be inspirational. They have to overcome their disabilities. 

It's always presented as if the disability is the obstacle instead of the disabling society. Also, when you see a disabled character, 99 percent of the time, the actor isn't even disabled. The characters tend to be white men who are physically disabled. There's no diversity, no nuance.

That was one of the biggest motivations for the book. The goal was to have disabled people talking in their own words. It wasn't just white, physically disabled people. I wanted to have cross disability, people from different backgrounds.

What do you mean cross disability? Can you talk about the range of disabilities represented by Criptiques?

People with chronic pain, people with autism. There's a really great story from a blind burlesque dancer. This is actually what disability culture is. People are doing amazing work, but you just don't see it.

Tell me about the PSA you posted on YouTube. It starts with, "Dear Diary, today was inspirational. Scratch that, I was inspirational. ... I did a lot. I even brushed my hair."


It's called "Your Daily Dosage of Inspiration." It's a satire of what is referred to as inspiration porn, when disabled people are presented as inspiration. Like when you see posters that say "The only disability in life is a bad attitude" and other things that are there to make non disabled people feel good about themselves. It's not acceptable to view disabled people doing everyday thing as inspirational. It should be normal.

What are the effects of disabled people being pigeonholed into that role?

It's very damaging on a psychological level. Disabled people feel like they're not allowed to be disabled. They're supposed to be ashamed. Or they're supposed to be exceptional. They have to be put up as some sort of inspiration for non disabled people. That's their role. That's the only way they'll achieve value, if they're inspiring. It's just a really insidious approach to disability, labeling everything disabled people do special. That separates us.

On that note, can you tell me why the film is subtitled "Very Special Episodes?"

It's a play on disabled people constantly being labeled special and a comment how infantilizing that is. Also, I grew up watching after-school specials. I love them. I love how cheesy and corny they are. We thought it would be fun to make a play on that.

Tell me about the episodes. What will people see Saturday? 

There are several episodes. We're not necessarily likeable. We're not choosing to do the right things. We're not inspirational. We're just us. We're going to show four videos. They're all pretty short. Then we'll have a Q&A. We'll be selling the book and hopefully just having a really interesting conversation about disability culture. Most people aren't even familiar with that phrase. I'm hoping people who are interested in seeing a different perspective on disability will show up because I think it's going to be really fun.

Australian disability activist, TED speaker, former Ramp Up editor, comedian Stella Young dies

I had the honor of meeting Stella Young in July 2014 in Washington, D.C. when she was touring the USA as part of the U.S. State Department's International Visitor Leadership Program. This picture is from our meeting, and she proudly shows her tattoo, "You get proud by practicing," which is from a poem by the late disability writer/poet Laura Hershey.

She was a longtime disability activist, editor, writer, comedian, but more importantly, she was confronting ableist attitudes worldwide with her TED talk about inspiration porn and her comedy. In my opinion, she is the one who truly began the attack on patronizing inspiration porn about disabled people with her 2012 article, "We're not here for your inspiration."

Young had gained so much international recognition from her June 2014 TED talk that when news of her death became known on social media in the northern hemisphere Dec. 7, her name became a top trending topic on Twitter. Her most recent article, from Nov. 22, titled, "Stella Young's letter to herself at 80 years old," was being shared all over social media.

Although known for her disability activism, she was also a fierce advocate for women's rights and LGBT equality in Australia, according to Melbourne writer Sinead Stubbins. "Stella was a champion of non-normative communities, and a critic of the frameworks that exploit them," Stubbins writes.

She was editor of Australia's ABC Ramp Up, a news and opinion website by and for disabled people started in 2011, which was shut down by the network in June 2014. Most disability advocates in Australia felt the end of Ramp Up was a travesty. A Save Ramp Up movement began soon after. Dr. George Taleporos, who leads the Save ABC Ramp Up campaign, wrote in The Guardian in June 2014: “Our discussion space will be gone. The voice of people with disabilities, a voice the ABC has nurtured for the past three and a half years, will be silenced."

University of Wollongong journalism lecturer Shawn Burns, who is affiliated with Save ABC Ramp Up, said, "Ramp Up was providing space for people with disabilities and disability issues to be presented as a part of the greater fabric of society – with all diversity. The mothballing of Ramp Up is a retrograde step."  Its shuttering robbed Australia of much needed discussion of disability issues by disabled people. Taleporos chats with Burns in this video about the shut down of Ramp Up.

Stella Young has hundreds of articles and talks, most available online: 

• Her writings for ABC's The Drum, an opinion website and TV show:  http://www.abc.net.au/news/thedrum/stella-young/2831584
• A list of some of Young's writings that ABC curated: http://www.abc.net.au/news/2014-12-08/what-we-learned-from-stella-young/5950876  
• A list of some of Young's presentations and comedy: http://mobile.abc.net.au/news/2014-12-08/best-of-stella-youngs-comedy-and-public-speaking-engagements/5950766
• Social media tributes to her:  http://www.abc.net.au/news/2014-12-08/stella-young-tributes-from-social-media/5950776

The story about her death from ABC News in Australia:

Prominent disability activist, writer and comedian Stella Young has died aged 32.

Ms Young was the former editor of the ABC's disability news and opinion website, Ramp Up.
Her family said she passed away unexpectedly on Saturday evening.

"With great sadness we acknowledge the passing of Stella Young, our much-loved and irreplaceable daughter and sister," the family said in a statement.

"Stella passed away on Saturday evening, unexpectedly, but in no pain.

"A private funeral will take place soon, followed by a public event in Melbourne, with more details to come.
"Our loss is a deeply personal one. We request privacy during this difficult time."

Ms Young was born in Stawell, in country Victoria, with Osteogenesis imperfecta, a genetic disorder that causes bones to break easily.

Her advocacy began at the age of 14 when she conducted an access audit on the shops on the local main street.

She was an ambassador for Our Watch and has been a member of various boards and committees in the disability sector.

Ms Young proudly described herself as a "crip" despite objections by others.

"People get all up in arms when I describe myself as a crip because what they hear is the word 'cripple' and they hear a word you're not allowed to say anymore," she told 720 ABC Perth in 2012.

"Crip is a word that I find empowering the same way that some members of the gay community, but not all members of the gay community, find the word 'queer' empowering."

Ms Young was a member of the Victorian Disability Advisory Council, the Ministerial Advisory Council for the Department of Victorian Communities, the Youth Disability Advocacy Service and Women with Disabilities Victoria.

She was a two-time state finalist in Melbourne International Comedy Festival's Raw Comedy competition and hosted eight seasons of Australia's first disability culture program, No Limits, on Channel 31.

She had been a regular contributor to ABC's The Drum since 2011, writing about issues for disabled people in the wider community and the disability services sector.

Ms Young also wrote for Mamamia and The Punch.

She campaigned hard against the idea that having a disability made her exceptional or brave.

"I want to live in a world where a 15-year-old girl sitting in her bedroom watching Buffy the Vampire Slayer isn't referred to as achieving anything because she's doing it sitting down," she said in April this year.

"I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.

"I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in Year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user."

"Disability doesn't make you exceptional, but questioning what you think you know about it does."

Stella Young's background from her IVLP paperwork:

(Photo by BA Haller)

 From the story about her death from ABC News in Australia:

Stella Young was 'incisive, challenging and provocative'

ABC managing director Mark Scott described Ms Young as "an unforgettable communicator and a passionate advocate".

"As a writer and broadcaster Stella was sharp and incisive, challenging and provocative," he said in a statement.

"She was very warm and generous, the first to laugh and to make us all laugh.

"Stella helped us understand disability issues by sharing with a raw honesty about her own life and forcing us to reconsider how we think about disability and create an environment where those with disability can best get on with their own lives.

"She took great delight in challenging conventional wisdom and lazy thinking."

FCC creates disability advisory committee

From Broadcasting & Cable:

The FCC is creating a Disability Advisory Committee and will accept nominations for members through Jan. 12, 2015.

The new committee will be a place where consumers and stakeholders can make recommendations and get feed back on issues ranging from device accessibility and emergency services to hearing aid compatibility, closed captioning and video description.

Emergency services is a particular issue in the transition to IP networks and new tech support of old tech critical communications.

The commission will use the committee for "advice, technical support, and recommended proposals on those issues and more."

The FCC is looking for CEOs and CTOs to serve two-year terms on the committee, with at least three one-day meetings per year and at least one working group or subcommittee meeting, which can be conducted informally. The likely start date for the new committee is first-quarter 2015.

Anyone interest in nominating someone or serving can check out fcc.gov.

FCC Chairman Tom Wheeler signaled early on in his tenure that universal and nondiscriminatory access to telecommunications means doing some catch-up work on serving the disabled community.

The FCC unanimously voted in February to require program creators and distributors to make their best efforts to improve the quality of closed captioning. 

Itzhak Perlman, other musicians with disabilities make their voices heard

From the Wall Street Journal. Pictured is Itzhak Perlman in his motorized scooter.

At a New York Festival of Song concert in November, the organization’s artistic director and co-founder, pianist Steven Blier, zoomed onto the stage in his battery-operated wheelchair.

“This takes a minute, so study your program notes,” Mr. Blier said to the audience as co-founder Michael Barrett held a piano chair for him to slide into, and then tucked the wheelchair away.

Mr. Blier launched into a program he dubbed “Art Song on the Couch,” connecting late 19th- and early 20th-century German songs with the ideas of Sigmund Freud.

Mr. Blier, who has a degenerative muscular disease called facioscapulohumeral muscular dystrophy, is one of three New York-based classical musicians with coming concerts who have navigated substantial careers despite significant health challenges. The careers of these musicians illustrate the difficulties, decisions, discrimination and even advantages that occur when health intersects with the physical demands of being on stage.

“A performing musician has to deal with these issues in a public forum, in a way the average person doesn’t,” said Joseph Straus, a music-theory professor at the CUNY Graduate Center and author of the book “Extraordinary Measures: Disability in Music.”

“It’s a distillation and heightening of what any person with a visible disability does every time they step out their front door,” he said.

Renowned violinist Itzhak Perlman , who on Wednesday will give his first solo recital in New York in seven years, has dealt with these issues for most of his life. He contracted polio at age 4, and at least early in his career people focused more on what they saw—a child with crutches—than heard, he said.

“I had to actually prove more, with greater intensity, that I was a genuine article as far as my music was concerned,” said Mr. Perlman, 69 years old.

As the violinist’s career skyrocketed, his perspective on disability changed. Mr. Perlman shifted from despising what he refers to as the “Crippled Violinist Plays Concerto” headlines to advocating for people with disabilities of all kinds, especially with regard to accessibility.

But it isn’t always easy, even for a well-known violinist who zips around on an electric scooter faster than his two leg-bound companions can walk. “Just recently, I was sitting on a plane, and the flight attendant asked my wife if I had a chair,” Mr. Perlman said. “This person did not talk to me because I was the problem. People think if you’re in a chair, you have a problem digesting information.”

The cellist Alisa Weilerstein, 32, who solos with the New York Philharmonic this week, was diagnosed with Type I diabetes at age 9. She began playing professionally at 14 but made a conscious decision not to tell her manager about her condition.

“I didn’t want them to think there was anything I couldn’t do,” she said.

These days, Ms. Weilerstein’s diabetes is under control because she assiduously manages it, testing her sugar about eight times a day and wearing an insulin pump, which is inserted into her abdomen with a catheter.
When performing, she wears the pump in what she calls her “Bond Girl pouch,” hidden under her dress.

Mr. Blier, 63, hasn’t always used a wheelchair. His muscular dystrophy is progressive, so he has, until several years ago, used a cane. And while it has made some things hard, there have been silver linings, he said, like the way that being forced to relearn elements of piano technique has made him a better teacher.

While he has accompanied well-known singers such as Renée Fleming and Susan Graham, he counts his muscular dystrophy as partially responsible for focusing his career toward New York Festival of Song, which presents thematic recitals and is, he said, his personal passion.

“I had set out to play for the big names of the day, and I did,” Mr. Blier said, “but I honestly find what I’m doing now much more fascinating.”

Certain common threads connect the musicians. Most were frustrated with media coverage early in their careers, which focused on health or disability.

“I was simply a musician, and I wanted the articles to be about music,” said the percussionist Evelyn Glennie, 49, who is profoundly, or nearly entirely, deaf.

Yet the musicians interviewed, by a certain point in their career, became not only comfortable talking publicly about health, but now use their status as an advocacy tool.

This ranges from Mr. Perlman’s high-profile speeches at polio fundraisers to Ms. Weilerstein’s conversations with families whose children have recently been diagnosed with diabetes. The saxophonist and Prism Quartet executive director Matthew Levy, 50, who has tinnitus, which causes phantom sounds, including ringing, in the ears, gives presentations about tinnitus and other playing-related injuries to high-school students.

Many musicians spoke of the need to be overprepared. “It’s what black people say, it’s what Asian people say,” said the mezzo-soprano Laurie Rubin, 36, who is blind. “You have to be better than the average white person, because people are going to put you in that sort of box.”

Those with physical disabilities are bound to meticulous logistical planners of everything from accessible concert halls to transportation to bathrooms.

And then there is discrimination, which shows up in subtle, and less than subtle, ways.

“My manager says, ‘There are so many conductors who won’t even hear you because they know you’re blind,’” said Ms. Rubin, who is also co-founder of Ohana Arts, a performing-arts festival in Hawaii.

Added Mr. Blier, “I’m quite sure there are a lot of gigs I just don’t get asked to do, because everything has to be arranged very carefully.”

Musicians spoke of strong support networks, from spouses to, in Mr. Perlman’s case, his parents, to artistic collaborators.

At the conclusion of that New York Festival of Song concert, for example, Mr. Blier’s fellow pianist, Mr. Barrett, didn’t stand up to bow in the usual fashion. Instead, the two singers and Mr. Barrett gathered around the seated Mr. Blier in a kind of a group hug.

Mr. Blier grinned from ear to ear.