Wednesday, April 15, 2020

People with disabilities fear pandemic will worsen medical biases

From Joe Shapiro at NPR. In the picture is Angel Miles. She says her PhD and her job as a health policy analyst aren't enough to win her respect when she goes to the doctor's office. She recently sued a hospital for what she says was poor care.

It's a moment that people with disabilities have long feared: there's a shortage of life-saving equipment, like ventilators, and doctors say they may be forced to decide who lives and who dies.
People with disabilities worry those judgments will reflect a prejudice that their lives hold less value.
State health officials have drafted rationing plans that exclude some people with significant disabilities from ventilators and other treatment.
Mostly, though, the belief among people with disabilities that they will get lesser treatment is based on something even more concrete — their own harsh experiences in the medical system before the pandemic.
Almost every person with a disability, or their family, can tell a story of a time when they were treated dismissively or even denied the care they needed.
That includes people like Lex Frieden. He's a research scientist and a professor at the University of Texas Health Science Center at Houston now and was the staff director of the federal agency that wrote the first version of the Americans with Disabilities Act, which prohibits discrimination against people with disabilities.
But none of that helped Frieden when he went to the emergency room.
"A car ran a red light and hit us on the side of the vehicle," he recalls. "The impact literally threw me from the wheelchair onto the floor of the vehicle."
Frieden is a quadriplegic — the result of another car accident, years before — so couldn't tell if he'd been injured.
But at the emergency room, the doctor told him his hip had been crushed.
"The doctor who was attending me said: 'You've got a badly broken injured hip. We've also observed that you're not walking.'" Frieden says. "And I said, 'No sir, I broke my neck in 1967 and I haven't walked since then.' And he said, 'Well, we're not going to repair the hip then.'"
The doctor's decision — that it didn't make sense to fix the broken hip of a man who would never walk anyway — led to years of pain for Frieden.
He still needs to sit up in his wheelchair, but now can't put weight on his broken hip. All the weight on his good hip causes pain, limiting how many hours he can sit in his wheelchair. And that limits how much he can get around.
Months after the accident, in 2006, Frieden went back to the hospital and argued he got the wrong care.
The hospital changed its policy.
"People who go to that emergency room with disabilities are looked at in a different framework," says Frieden. "And I'm happy about that."
Three laws protect the civil rights of people with disabilities in medical settings: The ADA, Section 504 of the Rehabilitation Act, and the Affordable Care Act.
In April and March, disability groups cited those laws when they filed complaints against the "crisis of care" guidelines in several states. Kansas and Tennessee, according to lawyers who filed the complaint, would cut care to some people who rely upon home ventilators to breathe, although many use them to lead active lives. New York's plan says that a person who shows up at a hospital with their personal home ventilator could have it taken from them and given to someone else. And Washington State would factor in old age and disability. Similar complaints have been filed from Pennsylvania, Utah and other states.
On March 28, the Office for Civil Rights at the Department of Health and Human Services announced it had opened or would open investigations based on these complaints and warned states that any guidelines for triage of care could not put disabled people and the elderly "at the end of the line" for care.
On April 8, the civil rights office announced its first case resolution in one of these investigations. Alabama said a policy no longer applied that would have allowed doctors to deny ventilators to some adults and children with intellectual disabilities or people with "moderate to severe dementia."
"Particularly, we're concerned that crisis standards of care may start relying on value judgments as to the relative worth of one human being versus another, based on the presence or absence of disability," Roger Severino, director of the HHS civil rights office, told NPR. "We're concerned that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care."
People with significant disabilities, including quadriplegics like Frieden and even those who use home ventilators, say their lives are full. They work, go to school and are part of families. They are not — as some rationing plans suggest — people close to death. Some are, however, because of their underlying health conditions, at a higher risk if they contract COVID-19.
But the public, and many in the medical community, can underestimate the lives of people with disabilities.
Dr. Lisa Iezzoni, a physician and researcher at Havard Medical School recently conducted a nationwide survey that aimed to assess doctors' attitudes about disability. A "vast majority" rated the quality of life of people with significant disabilities as a little to a lot worse than that of others.
"I was horrified," Iezzoni says.
People with significant disabilities tell Iezzoni they rate their lives as the same or better than others. Iezzoni is one of them. She has multiple sclerosis and has used a wheelchair since 1988.
"There's a lot of us roaming around with significant disabilities and who feel we have a pretty good quality of life," she says.
Those misconceptions have come up in other moments when the health care system has faced decisions to ration care. In the days after Hurricane Katrina in 2005, doctors and staff at Memorial Medical Center — where generators, lights and sewage went out — first rescued patients who could walk. One doctor said he left when colleagues spoke of euthanizing other patients. A state homicide investigation later found 20 had died with elevated levels of morphine in their system, even though only a few of them had been prescribed it for pain. A grand jury later declined to bring charges.
People with disabilities often have complex relationships with their medical providers. They distrust the system, but they work hard to find understanding doctors who provide care that keeps them healthy and independent.
"Any doctor we know we can trust is practically a secular saint in the community," says Riva Lehrer, a Chicago writer and artist who was born with spina bifida. At the start of the pandemic, her personal care physician called her at home and "read me the riot act." Stay at home, her doctor told her, and if you go outside and someone approaches, make sure you turn your body away from them.
Growing up in California, Rebecca Cokley's parents took her to conventions of little people where doctors who specialized in dwarfism would come and give free medical care.
At these conventions, little people formed friendships - including Cokley as she grew up - with the sympathetic doctors. "I've sat at the bar and had scotch and cigars with my neurosurgeon," Cokley says. "I've sung karaoke with geneticists. These are people I have known pretty much my entire life and I would trust 100 percent with my care."
So she was caught off guard in 2013 when, lying on the operating table after she'd just given birth to her second child, she overheard the anesthesiologist talking to the obstetrician.
"He made a comment to her and said: 'While you're down there, why don't you go ahead and just tie her tubes,'" she recalled.
Cokley and her husband objected: "I said what are you talking about? And he said, 'Now that you've had two, you don't need to have more kids.'"
"It was really mind-blowing to me," she says, "in that position of ultimate vulnerability — literally, being opened up on an operating room table — that I would have to sit there and actively advocate for my rights at that moment."
A few years ago, Cokley, who runs the Disability Justice Initiative at the Center for American Progress, went back to that same hospital in Washington — with no problems — for the birth of her third child.
It's easy for doctors and health care providers, she says, to pick up the biases of a system that views people with disabilities as "the problem."
Doctors, for example, Cokley says, "are trained to prevent birth defects. They are trained to provide a level of care so that people don't acquire underlying conditions."
When Alisha Hauber's son, Lane, was born with life-threatening disabilities, and rushed to the neonatal intensive care unit of a Fort Worth hospital, she and her husband noticed paperwork on the baby's crib with some unfamiliar letters: DNR.
When her husband asked a nurse what it meant, she was silent. Later, the Haubers were summoned to a room with doctors and hospital administrators. DNR, they were told, stands for Do Not Resuscitate. Without asking the parents, the doctors decided they would not do anything to rescue the boy if he went into distress. And the doctors declined to perform the surgery they said was needed to repair the baby's heart.
The Haubers were given no choice in the matter. "I just didn't know any better how to fight for him at the hospital at the time," Alisha Hauber says. "When you have big people at a huge hospital, you know, looking at you, telling you: You don't have a choice. So I trusted what they were telling me."
Their doctors sent the Haubers home with their son and told them to be ready for him to die.
But the doctors were wrong.
Lane is 11 now.
"He is full of personality," Hauber says with a laugh. "He is the sweetest boy."
Lane doesn't walk or use words but communicates with sounds and can shake his head yes or no. He laughs at jokes. He smiles when his mother reads books to him and he turns the pages. Hauber says he is more at risk because doctors declined to give him that early heart surgery.
"He's a huge part of our family. All of his siblings love him. We love him. He makes us laugh all the time," Hauber says.
Many people with disabilities fight, not just for life-saving care, but even to get access to care at all. Research shows disabled people get lesser routine medical care. Sometimes it's simply because an examination table is too high to get up on, or a doctor declines to give a full exam to someone who can't easily get out of a wheelchair.
That happened to a close friend of Iezzoni, Michael Ogg. Iezzoni has written in medical journals about how Ogg's doctor said he could not lift him out of his wheelchair to give him a physical exam. It was an assertion that "lacked merit," Iezzoni wrote in the New England Journal of Medicine. "Merely lifting his shirt would have revealed his protuberant abdomen," a sign of the untreated cancer.
Studies have found that disabled women are less likely to get mammograms and Pap tests. Another study found that those who get breast cancer are less likely to receive standard treatments and, as a result, are more likely to die.
Angel Miles has a PhD, and is the health policy analyst at Access Living, a Chicago disability center, but she still fights to be treated seriously when she visits doctors.
Even with her expertise, when she seeks treatment, she says she's dismissed as a black woman in a wheelchair. She reels off a list of frustrations: The doctor's office that insists she bring someone with her to help her get onto their inaccessible examination table; the people in medical offices who don't even talk to her directly.
"I'm often ignored," she says. "I'm often spoken at, and not to. Sometimes, the person next to me is addressed instead of me. And I don't even know them half the time."
In February, Miles sued a hospital that, twice, gave her hospital rooms that she says were inaccessible for her with her wheelchair.
She sued, in part, because — with her education and her job — she feels she can make change. And that's especially important in a pandemic.
"Right now...we cannot afford to have these barriers. We can't afford to have these biases. Because they literally are life and death," she says.
Alice Wong worries about those biases, too. Now 46, she was born with a progressive neuromuscular disease.
Wong's portable ventilator is on the back of her wheelchair. She speaks through a plastic mask and the tube to the ventilator.
She says people, including medical providers, see her and underestimate the quality of her life.
"It's not easy," she says, "but my life is so rich."
She's an on-line organizer, a founder of the Disability Visibility Project. A book she edited about disability will be published this spring.
"It's ironic," Wong says from her home in San Francisco, "but at a time when I'm really the most disabled I've ever been in my entire life, I've been the most active in the things I want to do in my life and in choices I'm making."
Technology and the medical system — especially some devoted doctors — allow her to live that active life.
But she's still afraid of a system that's overwhelmed, by the pandemic. "I really don't think I could survive if I was affected," she says. "I think about that a lot. I think about how much of a priority will I be given? Will I even get tested? Will I even have access to treatment?"
Late last year, the little known National Council on Disability released a series of reports looking at discrimination in health care against people with disabilities. It highlighted problems like insurance companies that use "quality of life" scores to deny medications and treatment; and organ transplants refused to people with autism, intellectual disabilities, mental illnesses or with HIV, even though scientific studies show their results with transplants are as good or better than the population at large.
The studies, from those months before the spread of the coronavirus, did not consider discrimination in medical care during a pandemic.
"But for people with disabilities, almost every day is a pandemic," says Neil Romano, chair of agency that issued the reports. "Because quite often they have to worry about what kind of care they're going to get, the quality of care, or if someone's even going to give them care."

Thursday, April 9, 2020

‘The Peanut Butter Falcon’ star Zack Gottsagen inks talent deal with Kapital Entertainment

From Deadline:

Aaron Kaplan’s Kapital Entertainment has signed a talent deal with Zack Gottsagen, the breakout star of The Peanut Butter Falcon. Under the pact, Kapital intends to develop a series-starring vehicle for Gottsagen, who made Oscar history this year as the first person with Down syndrome to present at the marquee awards show. 
The Peanut Butter Falcon marked the feature acting debut for Gottsagen, who had studied acting since he was a kid and worked as an usher at his local movie theater while pursuing his dream of becoming a movie star. 
Kaplan watched the movie, in which Gottsagen stars opposite Shia LaBeof and Dakota Johnson, with his family over the holiday break in December. Everyone was blown away by Gottsagen’s performance, leading to Kaplan’s decision to seek out the actor for a potential TV series. 
“I was so moved by Zack from the moment he was on screen,” Kaplan said. “His gentle, optimistic and authentic performance helped to make The Peanut Butter Falcon one of the best films of the year. I am honored that Zack is allowing me to be his partner.”
This marks the first talent deal for Kapital. It is not a business the indie studio plans to be in except for unique cases like Gottsagen. The actor will serve as producer on a show developed for him, which his manager, Joel Zadak, will executive produce through Artists First. 
Gottsagen’s role as aspiring wrestler Zak in the buddy comedy-drama The Peanut Butter Falcon has earned him accolades, including the Rising Star Award at the 2020 Palm Springs Film Festival and the 2020 Newcomer Award from the Hollywood Critics Association. The film, which premiered at South by Southwest, was a sleeper hit, pulling in over $20 million to become the highest-grossing indie film of 2019. 
Gottsagen’s agent is KMR’s Gail Williamson who represents a lot of actors with disabilities and has been a longtime advocate for actors with special needs. Both Williamson and Zadak have sons with Down syndrome. 
Additionally, Gottsagen is repped by attorney Priya Verma at Morris Yorn.

Friday, April 3, 2020

NBC’s ‘Zoey’s Extraordinary Playlist’ enlists Deaf performers In April 5 episode for unique television musical experience

From Deadline

The new NBC Sunday night musical series Zoey’s Extraordinary Playlist, which is about the title character, played by Jane Levy, who has the ability to hear the innermost thoughts of people around her in terms of  popular songs and big dance numbers, has been building a dedicated following and is a priority I am told when it comes to the network’s Emmy campaign plans. This coming Sunday’s special episode, “Zoey’s  Extraordinary Silence” ought to add to the buzz with a storyline involving the deaf community, and in particular a musical number produced in association with the Deaf West Theatre Company set to the Rachel Platten pop tune, “Fight Song”. You can see a featurette about the making of the episode by clicking the link above. 
The number takes place  in the deaf dorm on a college campus , and features the primary deaf character in the episode, Abigail, played by  Sandra Mae Frank who had performed in the Deaf West production of Spring Awakening in L.A. and on Broadway. The series’ choreographer, as well as a producer of it, Mandy Moore worked closely with Deaf West Artistic Director David Kurs in putting together the cast for the number, about ten of them coming from different regions of the U.S. to round out the versatile performers needed, all of them deaf and using American Sign Language. It was a unique challenge for Moore, who has had her share of them, including as choreographer of the Oscar-winning La La Land.  
In a phone conversation earlier this week she told me the idea to do the episode and the number came from the show’s creator Austin Winsberg, who was familiar with Deaf West in L.A. and had seen a bunch of shows there and was excited about the idea of bringing them into his series.  A lot of work went into it. “I realized very quickly that I was going to need to do some preproduction on my end, not only to make the routine, but also just to learn ASL because people think that dance and ASL go very beautifully together. I think ASL is so fluid and kind of looks like dance of the hands and stuff,”  she said while acknowledging part of the difficulty was in making a clear translation of “Fight Song” into American Sign Language, but also learning there really was about a hundred different ways it could be translated. a very tricky assignment. 
“And in that rehearsal process it was very telling. Holy smokes, everything I thought I knew I threw out as soon as I got in the room which was really beautiful, fun and scary, but very cool. And we worked for about three hours I think in that initial preproduction rehearsal, and it was trying not only to understand what signs we were going to do for what words, but also adding a bit of movement to it. So say you’re signing a certain word with your hands, but then you might stomp with your feet, or you might turn around 180 and turn the other direction. Funny enough, that can really take away from the beauty and the clarity of the ASL, so that communication and that understanding and that creation took a long time to figure out,” she said. 
Of course Moore, who is also an Emmy winner for So You Think You Can Dance and Dancing With The Stars, has conquered challenging numbers before including staging that amazing opening musical number in La La Land set entirely in a traffic jam on a Los Angeles freeway, but this was different as she explained. “I think each number honestly has their challenges. I will say that this is probably one of the most challenging things I’ve ever done because you’re going into a situation where you don’t have the tools, like part of the tools you need to build a house you don’t have, you know? I just wanted to respect the language because I just didn’t want to make some stupid dance that just made a mockery of this beautiful language, right? It was really hard tonally just to figure out what was right and to make sure that all these performers felt trusted and heard in a way that they could express how they feel about something, because they’re all really incredible performers and actors, you know? And so, it was really interesting to hear them, which is so weird to say hear, but to listen to them, and to the translators and debate what was the correct sign for a certain emotion or certain word.” 
Moore is happy she was able to part of such a groundbreaking kind of performance on network television, a performance of a song but with no singing. From the beginning Winsberg was adamant that it would be done this way, without subtitles, even though Moore says some people may not get it, but that’s okay. “It’s very beautiful when you watch it and you feel it. You know I think you watch it and go like, wow, this is something I don’t really know anything about,” she says adding that it is really exciting and gratifying to not only be a choreographer of a weekly series with ever changing needs, but also becoming a producer on the show and getting in on the ground floor of decisions, being able to help guide and craft the musical content. 
“It is its own little unique thing. You know people watch it and they just go like, wait, what is this?, and then you’re somehow like drawn into it in a  kind of quirky, weird way. Obviously Jane is a superstar, like I just cannot say enough about her,” she said. “And I mean personally, I love the writing. That’s also why I was drawn to the project, because I love the writing, I love the idea that dance can live in a very different world in Zoey’s world, you know that it doesn’t have to be sequenced and turns and jumps and kicks, but it can be real-world people moving through a real space singing in a real way. I just think there’s something very unique about it. It’s a really beautiful show.”Zoey’s Extraordinary Playlist airs Sundays on NBC.

How disabled activists are fighting isolation collectively in California's Bay Area

From In These TimesPhoto: Yomi Wrong, who is participating in the Disability Justice Culture Club’s mutual aid network, sits outside her East Oakland home as Katie Loncke (back right) cleans Wrong’s cat’s litter box. (Brooke Anderson)

OAKLAND, Calif.—“I already disinfected the door handle, so come on in!” Yomi Wrong says. A rambunctious puppy eagerly eyes us through the gate. “Shiloh can’t wait to see you.”

As a healthcare compliance manager, Wrong is used to being out in the world—from going into her office to taking the dog for long strolls around Lake Chabot. All that changed when she began sheltering in place to lower her chances of contracting COVID-19.

“I’ve lost so much human connection,’’ Wrong says. “My sister lives in Alameda, but I haven’t seen her in over a month because she is immunocompromised. The two of you are the people I most consistently see.”

My friend Katie Loncke and I have been stopping by Wrong’s home every other day for the past three weeks as volunteers for a mutual aid project launched by the Disability Justice Culture Club (DJCC), a collective of five disabled and neurodivergent queer people of color in Oakland. Mutual aid projects like these aim to bring people together to help meet each other’s basic survival needs.

“Many of us don’t have support from our families—especially the queer elders who don’t have kids or [who] live by themselves,” says Jay Salazar, a DJCC member and a mutual aid network architect. “They carry so much knowledge and vision. Knowing these people are some of the most at risk pushes us to do this work.”

As coronavirus cases in the Bay Area increased in mid-March, DJCC began pairing people who were at higher risk, disabled or elderly with allies who could provide mutual aid during a shelter-in-place order. According to its sign-up form, DJCC “prioritizes [Black, Indigenous and people of color] who need to limit exposure to others because of health concerns.”

Members also made and distributed 100 anti-coronavirus kits to unhoused neighbors living in tent encampments. The kits included surgical masks, gloves, homemade scent-free hand sanitizer, and a vitamin mix.

Loncke and I connected through the network with Wrong, who welcomed the extra support after buying her first house, going through a difficult breakup and recovering from an illness. Between the two of us, we run Wrong’s dog Shiloh, scoop dog poop, empty her cat’s litter box, go with Wrong to get groceries, and do other tasks while maintaining six feet of distance and following other safety protocols.

This is about more than just helping to take out the trash, however. The three of us are—as DJCC puts it—“fighting isolation, collectively.”

“Our mutual aid is also a form of collective rebalancing, because we are prioritizing people that the government deems disposable,” Loncke says. “Officials are already talking about rationing care and withholding life-saving medical treatment from patients deemed high-risk of fatality. To us, this logic is flawed and deeply misguided. We choose to live in a way that truly values everyone.”

This isn’t DJCC’s first time mobilizing mutual aid practically overnight. In fall 2019, California’s largest utility, Pacific Gas & Electric (PG&E), implemented rolling blackouts, leaving millions without power in a widely criticized move aimed at preventing wildfires. Fearing that many in their community would be unable to power ventilators, recharge wheelchairs, or refrigerate insulin, DJCC pooled funds to buy generators and found accommodations outside the blackout zones for people who needed power. Similarly, when the Bay was blanketed in toxic wildfire smoke in fall 2018 and 2019, DJCC made do-it-yourself air filters, distributed masks and sealed up homes.

“We talk about the foundational principles behind disability justice and what it means to be in community and interdependent, we talk about it, we organize around it,” Wrong says. “But with the PG&E shutdown and now this global pandemic, I’m seeing it in action to ensure our community survives.” Disability justice principles, such as those articulated by the performance project Sins Invalid, include leaving no mind/body behind, centering the leadership of the most impacted, and committing to intersectional, cross-movement organizing.

The practice isn’t always easy, however. Salazar notes that many disabled people have not only “had to stop working, isolate ourselves, and worry about our families, but also worry about where to get our next meal. The physical and mental toll that takes on us is real. We shouldn’t have to do the work [of helping meet people’s basic needs] that elected officials—who, unlike us, are still getting paid every single day—should be doing.”

Still, many activists say that in a system not set up to meet everyone’s needs, help from elected officials won’t come fast enough or reach those who need it most. Instead, communities across the country are self-organizing. These bottom-uphyperlocal solidarity networks often reveal the system’s failure to protect people, teach neighborhoods to self-organize, and permanently reshape social relationships.

“It’s an elegant way of supporting people—organic, grassroots, authentic, not rigid. It allows each person to show up as they are and contribute what they can and not be ashamed, on the need side or the giving side,” Wrong says. “It’s a beautiful spiritual exchange between people.”