Wednesday, December 30, 2020

Oscar-worthy ‘Sound of Metal’ a ‘wake-up’ to Deaf culture


From Variety:

Amazon’s “Sound of Metal” is a piece of terrific filmmaking — and its achievements are even more impressive considering Hollywood’s depictions of deafness in the past.

“Sound of Metal,” directed by Darius Marder, stars Riz Ahmed (pictured) as a heavy-metal drummer who begins to lose his hearing. The film has a three-act structure: Attempts by drummer Ruben to cope; his time spent in a deaf community; and his attempts to re-create his life as it was before the hearing loss.

The heart of the film is the middle segment, when community leader Joe (the excellent Paul Raci) tells Ruben that deafness “is not something to fix” and his assignment is simple: “Learn how to be deaf.”

Director Marder tells Variety, “This film is a wake-up. Most people think of deafness as a physical disability. We don’t understand that it is in fact a culture.”

In the past, most onscreen characters with any disability have been played by able-bodied actors. “I made it very clear that I wasn’t going to represent deaf people unless the actors were deaf or from a deaf culture,” Marder says. By way of example, he adds, “Joe is such a demanding role and some money people saw that as a role for a name actor. It was difficult to tell financiers, ‘We’re not gonna do that.’ ”

This respect of deaf culture makes the film an exception to Hollywood history. Oscar winners include Jane Wyman (“Johnny Belinda”) and Patty Duke (“The Miracle Worker”), and nominees include Alan Arkin (“The Heart Is a Lonely Hunter”) and Rinko Kikuchi (“Babel”). All four played deaf characters, and all four are hearing actors.

Sometimes movies introduce deaf characters for laughs (the Neil Simon “Murder by Death”), or as a plot device in thrillers (the 1987 “Suspect,” “The River Wild,” “Hush,” et al.)

Frequently a film tries to make a supporting character unusual by making them deaf or hard of hearing, including “Creed,” “Four Weddings and a Funeral,” “In the Company of Men,” “Mr. Holland’s Opus” and “Nashville.” In the vast majority of these films, the deaf character is alone in a hearing world, with no sense of community.

There are notable exceptions, such as “Children of a Lesser God,” starring Oscar winner Marlee Matlin, and characters played by CJ Jones in “Baby Driver”; Russell Harvard in “There Will Be Blood” and the biopic “The Hammer”; and Millicent Simmonds in “Wonderstruck” and “A Quiet Place.”

Did Marder consider casting a deaf actor to play drummer Ruben?

“I didn’t, because there’s a process that Ruben goes through as a character, and that the actor and the audience will go through. It’s a process of being thrust into a world that’s unfamiliar. Hearing people become the minority. You would lose that element if the actor was deaf, because they would come from a place of comfort.” The audience learns “how to be deaf” at the same time Ruben does and part of the dramatic tension in the film — scripted by Marder, Derek Cianfrance and Abraham Marder — is wondering if Ruben will ever adjust.

After Hollywood’s sad history of deaf depictions, Marder says, “Movies that try to appropriate deaf culture and represent it without proper connections are pretty offensive. Deaf people always remember when someone pretends to be deaf. But I have noticed a generous spirit in the deaf culture. They’re not looking to tear things down.

“The deaf community unfortunately has gotten used to being ignored and dismissed. They are moving from feeling grateful that people even notice that they exist, to realizing that they should be noticed.

“As Paul always says, ‘Nothing about us without us.’ ”

Sunday, November 15, 2020

"Run" on Hulu, an excellent thriller starring wheelchair user Kiera Allen, moves disability representation in positive direction

 Review by Beth A. Haller, Media dis&dat

Note: “Run” was originally slated for theatrical release in May, but when the Covid-19 pandemic shut theaters, Hulu bought distribution rights in August. “Run” will premiere on Hulu November 20, 2020.

“Run” is a bold thriller with “American Horror Story” staple and Emmy winner Sarah Paulson and newcomer Kiera Allen, who is a wheelchair user. The Lionsgate film, directed by Aneesh Chaganty, is the first Hollywood studio film to star a wheelchair user since 1948, when Susan Peters starred in “Sign of the Ram” for MGM. (Peters, already an Academy Award-nominated actor, became disabled in a gun accident in 1945.)

Allen is the true star of the film and has the most screen time as the home-schooled teen, Chloe, who begins to suspect all is not right in her isolated, rural home that she shares with her mother Diane (Paulson). Chloe is ready to break free and go to college and that sets off the terror. 

Unlike other films that disable characters to make them vulnerable, the Chloe character's disability in “Run” is just another character trait - one that aids her resourcefulness, as her home schooling does. Several scenes feature Allen's character MacGyvering her way around obstacles. It is thrilling to watch, and the audience becomes invested in Chloe figuring out the secrets and out-maneuvering Diane’s control. It also confirms that Hollywood studios should be casting many more disabled actors for all kinds of roles: Allen gives a brilliant physical performance because she has a number of scenes with no dialogue. Chloe ingeniously figures out workarounds when presented with any difficulty.

Paulson’s Diane shows her finesse with the thriller genre as her character subtly shifts from motherly to menacing. Chloe and Diane’s relationship arc takes the audience on a psychological ride through the awakening to the secrets around Chloe. Diane believes she can control Chloe because of her disability, not realizing she has raised a resilient young woman who is every bit her match. 

The film also uses CGI in one scene in a way I have long advocated - to show a wheelchair-using character walking in the past or in the future, but through CGI, a disabled actor is used in the scene with CGI’d walking.

“Run” illustrates how the representation of a disabled character can have depth and nuance, but having a disability is not the only memorable thing about the character. Director Chaganty took a collaborative approach in working with Allen to make sure she, as a disabled person, help craft an authentic character. Read about their work together here.  

“Run” feels like the beginning of a new positive trajectory for disabled characters in film. I hope that all Hollywood studios continue on this path of authentic representation.


Tuesday, October 27, 2020

Entertainers discuss disability representation in Hollywood

From The Associated PressIn this combination photo, Marlee Matlin, from left, arrives at the 38th Annual Daytime Emmy Awards on June 19th, 2011 in Las Vegas, Millicent Simmonds arrives at the 24th annual Critics' Choice Awards on Jan. 13, 2019, in Santa Monica, Calif., Danny Woodburn attends the premiere of "Dead Ant" on Oct. 10, 2017, in Los Angeles and Maysoon Zayid attends the Women's Media Awards on Oct. 22, 2019, in New York. Matlin, Simmonds, Woodburn and Zayid are just a few of the Hollywood insiders who participated in a series of virtual panels Monday, Oct. 26, 2020, examining the state of disability representation in Hollywood. The series is hosted by the Academy of Motion Picture Arts and Sciences in celebration of the 30th anniversary year of the Americans with Disabilities Act.

It’s an old cliche that if an actor wants to win an Oscar, he or she should consider playing a character with a disability. And it’s not entirely unfounded advice: 61 actors have been nominated for playing a character with a disability and 27 have walked away winners. But only two of those actors actually had a disability — Marlee Matlin in “Children of a Lesser God” and Harold Russell in “The Best Years of Our Lives.”

That’s just one of the things that needs to change, according to a group of entertainment industry professionals with disabilities including actors Danny Woodburn, “A Quiet Place’s” Millicent Simmonds and “Peanut Butter Falcon’s” Zack Gottsagen. They and other creatives with disabilities, from directors to VFX artists, spoke about the state of representation in front of and behind the camera in series of virtual panels organized by the Academy of Motion Picture Arts and Sciences that debuted Monday night. The panels, funded in part by a grant from the Ruderman Family Foundation, coincides with the 30th anniversary year of the Americans with Disabilities Act.

“It would be really helpful to have a disabled (Disney) princess,” said actor and comedian Maysoon Zayid, who has cerebral palsy.

Zayid noted that people with visible and invisible disabilities make up about 20% of the American population but a miniscule number of characters on television and in film.

“The message being sent out to disabled kids is you do not belong in this world,” Zayid said. “People with disabilities face enormous amounts of bullying, violence and discrimination. Positive images of disability can stop that.”

Part of that is casting actors with disabilities to play characters with disabilities. Simmonds, who is deaf, said she’s had to go up against non-disabled actors for disabled roles. She recalled that her “A Quiet Place” director John Krasinski had to fight to cast a deaf actor and that producers wanted someone who was hearing.

“Deaf roles should be played by deaf actors,” she said through an interpreter.

At times she’s even taken it a step forward to advocate for herself.

“I’m not above calling directors or producers and suggesting that they have a deaf actress for a particular role,” she said.

But another part of the equation is giving actors rich and nuanced storylines that go beyond the three they usually get: “‘You can’t love me because I’m disabled,’ ‘heal me’ or ‘kill me,’” said Zayid.

Woodburn, who has dwarfism, remembers watching actors like Michael Dunn when he was young and seeing only stereotypes and tropes like the “sad little man” or the “devious little man” and storylines that were the same.

There is also the issue of working and how productions can be more accommodating to people with disabilities both on screen and behind the scenes. Many noted that they don’t want to ask for special accommodations.

Zayid remembered being unable to get into her trailer on the set of “You Don’t Mess with the Zohan” and basically had to ask a production assistant to help hoist her up.

“Adam Sandler saw and said, ‘What is happening? Make her trailer accessible!” I said I didn’t want to be high maintenance,” she said. “He said ‘look around, we’re in Hollywood.’”

Jim LeBrecht, who directed the Netflix documentary “Crip Camp,” said it could help if the industry re-thought its own barriers to entry, like starting as a production assistant who has to carry 14 cups of coffee and work 20 hour days to get a foot in the door.

“Instead of asking what you won’t be able to do, ask is there anything I can do to help you do the best work you can,” LeBrecht said. “None of us got to your door by being oversensitive and mad at everybody...we are comfortable with our disability.”

VFX supervisor Kaitlyn Yang said that people with disabilities can be particularly effective in post-production roles. She’s also found a silver-lining in the video conferencing realities of COVID-era filmmaking: She doesn’t have to wonder now if she should address her wheelchair.

“Video conferencing is taking away the uncomfortableness that people might have if I were to take a meeting and roll into the conference room,” Yang said. “It puts us on an equal playing field.”

Talent manager Eryn Brown hopes that disability representation reach the same level of discussion as LGBTQ and racial and ethnic diversity. She said the ingrained stigma around it has even made her reticent to discuss it with her clients.

“A raised awareness in this moment of cultural reckoning is imperative,” Brown said. “Anyone at any moment can become disabled so it’s in everyone’s best interests in the world to be accommodating.”

The film academy, which puts on the Oscars, has been working to increase diversity in its own ranks and in the industry and recently set inclusion standards for best picture nominees.

“As the Academy continues to examine longstanding issues of representation within the film industry, it’s imperative we bring conversations about disabilities to the forefront,” said Christine Simmons, who heads the Academy’s office of representation, inclusion and equity.

Sunday, September 27, 2020

BBC America’s ‘Crip Tales’ features the talent of people with disabilities

from BBC America

BBC America has announced in September that October 1 would be the world premiere date for CripTales – a collection of six short films curated by Mat Fraser (His Dark Materials, American Horror Story) – each one written, directed and performed by a person living with disabilities.

The six 15-minute monologues will premiere on Thursday, October 1 at 10pm ET on BBC America and the entire collection of films will also be available to stream at the start of National Disability Employment Awareness Month across the digital platforms of the AMC Networks Entertainment group: BBC America, AMC, IFC, SundanceTV and AMC+.

Each film is a fictional monologue capturing a life-changing moment for a person with disabilities, based on factual research and lived experience and spanning the last 50 years of British history.

The monologues are written by Mat FraserJackie HaganJack ThorneGenevieve BarrTom WentworthMatilda Ibini; performed by Mat FraserRobert Softley GaleRuth MadeleyJackie HaganLiz CarrCarly Houston; and directed by Ewan MarshallAmit Sharma and Jenny Sealey.

The films cover a variety of experiences, from an actor (played by Fraser) in the present day waiting to go into an audition and dreading how it will be, to a young woman in 1968 (played by Madeley; Years and Years, BBC America’s The Watch) contemplating the future of her pregnancy.

“I’m so proud and excited to present these wonderful stories for mainstream TV audiences around the world, thanks to BBC America and BBC Studios,” said Fraser. “The authentic voices, taut direction and shining performances combine to make a series of diverse and dramatic monologues that are compelling, refreshing, and above all, entertaining.”

CripTales brings to our screens a beautiful collection of short films, curated by the incredibly talented Mat Fraser, shining a light on stories that don’t often make it to primetime,” said Courtney Thomasma, Executive Director of BBC America. “At times hilarious and at others heart-breaking, these monologues exemplify both the diversity of experience among people living with disabilities and the thoroughly relatable dilemmas we all face in life.”

During the broadcast and online, AMC Networks will share with viewers how they can support the efforts of The American Association of People with Disabilities (AAPD), one of the leading national cross-disability civil rights organization that advocates for the full recognition of rights of over 60 million Americans with disabilities.

To mark the launch of CripTales and October as National Disability Employment Awareness Month, AMC Networks will share a Visibility Collection that includes CripTales, Critics Choice Award winner Push Girls, and This Close, which has received the Ruderman Family Foundation Seal of Authentic Representation. The Visibility Collection will be available to stream free (no log-in required) across the apps and websites of BBC America, AMC, IFC and SundanceTV for the month of October.

CripTales is a BBC America co-production with BBC Studios’ Documentary Unit, with Debbie Christie serving as executive producer. BBC America began co-producing and premiering innovative short-form monologue series with the GLAAD Media Award-nominated Queers and later the BAFTA-nominated Snatches: Moments from Women’s Lives.

Saturday, July 25, 2020

‘Rising Phoenix’ – Netflix to broadcast ground-breaking Paralympic documentary August 26

From the IPC. The photo features Italy's Bebe Vio, one of the athletes featured in 'Rising Phoenix.'

Featuring Paralympians from across the world, 'Rising Phoenix' tells the extraordinary story of the Paralympic Games
On Wednesday 26 August ‘Rising Phoenix’, a ground-breaking movie about the Paralympic Movement, will premiere in over 190 countries worldwide on Netflix.
The film release was planned to coincide with Tokyo 2020 but will now form an important part of the celebrations leading up to the Paralympic Games next year. 
Featuring Paralympians from across the world, Rising Phoenix tells the extraordinary story of the Paralympic Games. From the rubble of World War II to the third biggest sporting event on the planet, along the way sparking a global movement which continues to change the way the world thinks about disability, diversity and human potential.   
Athletes featured in the film include Bebe Vio (Italy), Ellie Cole (Australia), Jean-Baptiste Alaize (France), Matt Stutzman (USA), Jonnie Peacock (UK), Cui Zhe (China), Ryley Batt (Australia), Ntando Mahlangu (South Africa) and Tatyana McFadden (USA).    
Rising Phoenix is an HTYT Films and Passion Pictures production in association with Ventureland and Misfits Entertainment.

Netflix orders two documentaries about Deaf community in America

from Deadline:

Netflix has ordered Deaf U and Audible, two documentaries centered around the deaf community in the U.S. 
Deaf U is a coming-of-age documentary series following a tight-knit group of Deaf students at Gallaudet University, a renowned private college for the deaf and hard of hearing, in Washington, D.C. 
As the group of friends navigate the high, lows, and hookups of college life together, their stories offer an unprecedented, unfiltered, and often unexpected look inside the Deaf community. 
The doc, which will premiere on October 9, consists of eight episodes of around 20-minutes. It will be exec produced by Eric Evangelista, Shannon Evangelista and Nyle DiMarco. 
Audible is an immersive film, documenting the journey of Maryland School for the Deaf high school athlete Amaree McKenstry-Hall. 
Amaree and his closest friends face the pressures of senior year while grappling with the realities of venturing off into a hearing world. They take out their frustrations on the football field as they battle to protect an unprecedented winning streak, while coming to terms with the tragic loss of a close friend. This is a story about kids who stand up to adversity and demand to be heard. They face conflict, but approach the future with hope – shouting to the world that they exist and they matter. 
The 36-minute film is directed by Matt Ogens, produced by Geoff McLean  and exec produced by Ogens, Peter Berg, Matthew Goldberg, Brandon Carroll and Nyle DiMarco.

Monday, June 22, 2020

Kayla Cromer: ‘Everything’s Gonna Be Okay’ inspired me to go public about being on the autism spectrum

from Hollywood Life:

Kayla Cromer plays Matilda in the series ‘Everything’s Gonna Be Okay.’ Kayla spoke with HL about autism representation on TV, Matilda’s evolution, and season 2 hopes.

Everything’s Gonna Be Okay premiered in Jan. 2020 and became an instant critical darling. The show follows Nicholas, Matilda, and Genevieve as they come together and grieve the loss of their father. Over the course of the first season, the trio experiences all of life’s ups and downs with laughs aplenty.

Kayla Cromer, 22, was a standout performer as Matilda in the first season. Her terrific performance at the funeral for Matilda’s father set the tone for the series. In an EXCLUSIVE interview with HollywoodLife for our Emmy Contenders series, the neurodiverse actress and activist opened up how the show “inspired” her to come out about being on the autism spectrum, the season 1 scene that sticks out to her the most, and her hopes about the future of Hollywood for any actor with a difference.

What was your first impression of Josh Thomas [the show’s creator and star]? Had you heard of him before this project?
Kayla Cromer: I hadn’t heard of him but did research him before submitting to his casting. My first impression was, “Wow, he conducts auditions differently!” He came across real. He wanted to get to know me. I wasn’t just a number. We spent time chatting, even before I read for the part.

Did you draw on your own experiences as someone on the autism spectrum to help build the character of Matilda?
Kayla Cromer: I believe in finding something within the character that is you in order to create a more organic performance. Yes, I definitely revisited experiences and pulled from them. From the start, I found some similarities to Matilda that resembled me when I was younger. Autism is a very board spectrum, so I also researched by watching documentaries, movies, and read, too, so I could relate to more people.

How do you feel about Matilda’s evolution from the beginning of the season to the end?
Kayla Cromer: For it only being a 30-minute show, the writers penned her experiences very well. One key strength Matilda and I both possess is perseverance. Matilda really pushed through hurt, displayed humor without even knowing it, and showed struggle and growth. She kept it very real and relatable for viewers.

How has Matilda inspired you in real life?
Kayla Cromer: The eulogy scene was part of the audition process. It impacted me a lot! Just like Matilda, I’ve been open about my differences, except in my career. Matilda and the show inspired me to publicly come out about being on the spectrum, which turned into a snowball effect. So many people have reached out to me in a positive way.

Is there a season 1 scene that sticks out to you the most — whether it’s your favorite or the most challenging? The eulogy scene remains one of my favorites.
Kayla Cromer: The eulogy speech is also a favorite of mine. The Peach Schnapps scene that went viral was challenging in a comedy sense. In real life, I choose not to drink and I’ve never been drunk. I watched Youtube videos of people recording someone drunk and studied speech and mannerisms. My glass in the scene was filled with water [laughs].

Matilda loses her dad at the start of the series. What was it like exploring the many facets of grief through the character?
Kayla Cromer: I climbed inside and really wanted to feel her hurt. You can feel emotionally spent revisiting experiences. I lost my Grandma Shirley and tapped into that, which left me sad and happy. It’s like a tug of war with emotions exploring inner challenges in one scene and then pushing forward with healing humor in another.

The show has been renewed for a second season. Is there anything you want to explore with Matilda in future episodes?
Kayla Cromer: Advocating more for herself in school, life, and a job, driving, learning life skills, benefits of working through change, exploring romance options, too. She’s in an experimental phase. Watching her evolve will be fun and amazing.

Do you think we’ll see Matilda go back to New York to try again?
Kayla Cromer: With COVID-19, they’ll be lots of changes in production. But, hey, sets can be made! I want Matilda to realize she faced her fears head-on, to get back on track and look at it as a life lesson. It has the potential to empower people to be resilient with their goals and not give up!

Since the show premiered, have you heard from other actors and actresses on the autism spectrum? If so, what’s that experience been like?
Kayla Cromer: I mainly receive messages and fan mail from the autism community, more than actors with differences. But it’s always the same: “Thank you for representing us,” and “finally seeing myself on the small screen!” Sometimes it’s quite heartbreaking, having some pour their story into a DM. To have girls say “I look up to you” warms my heart and inspires me to do more.

What are your hopes for the future regarding actors on the autism spectrum in Hollywood?
Kayla Cromer: Not just actors with autism, but any actor with a difference. To toss stereotypes out the window! I don’t want production to think their budget will go higher with accommodations if we cast this person. Frankly, we work harder than the average person. I strongly believe we should be able to audition for characters without disabilities, too. We made a lot of progress in 2019, and I want that to keep flourishing. Casting needs to reflect the real world. Now more than ever, entertainment audiences are seeking imperfect role models! It’s time to cast them in the big and small screens!

Wednesday, June 3, 2020

Disability advocates fear losing fight for inclusion in post-pandemic Hollywood

From Forbes. In the picture, Tobias Forrest, who plays Patrick in Daruma, on set, filming the trailer for the film.

For almost a year, Kelli McNeil has been fundraising for her movie Daruma, a film she calls a “dysfunctional family road trip.” 
The big twist: the two main characters, Patrick and Robert, are disabled. Patrick is a paraplegic and Robert is a double-arm amputee, but unlike most Hollywood narratives, the disabilities aren’t the focus of the script, nor are they an obstacle to overcome. And, after a nationwide search, McNeil cast two actors with disabilities to play the lead characters. 
Her work is notable in an industry still grappling with a dearth of disability-centric storylines and characters. Although representation has seen some improvement over the years in television and film, advocates argue it is still all-too-rare to see people with disabilities working in front of or behind the camera.  
Now, with the presence of a worldwide pandemic – and Hollywood virtually shut down – they fear the fight for inclusion will only get more complicated once productions start back up. 
“We don’t know how things will turn out, but there is a lot of fear among activists,”  said Deborah Calla, Co-CEO of The Media Access Awards, a nonprofit organization that celebrates and creates opportunities for people with disabilities in media. 
“Once production begins, there will likely be fewer opportunities because of modified production, lower budgets, less money, and modified storylines. We have a good chance of going back a few steps in terms of inclusion.” 
And if disability inclusion falls behind, Calla and her co-CEO Allen Rucker say, it will be detrimental. 
“You have to understand that in the field of diversity, people with disabilities were not even included until a few years ago in Hollywood, they were just left out,” Rucker said. “But about three years ago, because of the ‘Me Too’ movement, all of the sudden people with disabilities were getting hired to be guest stars on shows, then to be stars and then people with disabilities were creating their own shows.” 
“It was a real positive feeling,” he said.  
“But with the COVID pandemic, who knows what’ll happen next.”
In mid-March, COVID-19 forced the vast majority of Hollywood to come to a screeching halt. Theatrical releases were cancelled, and everything from indie film productions to entire festivals were shut down or postponed indefinitely. Everything stopped.  
Many Hollywood professionals have been out of work since, including Tobias Forrest, a quadriplegic, cast by McNeil to play one of the leads in Daruma. While it was his first lead role in a 15-year career, Forrest has seen much success in recent years, and fears how the Pandemic will impact him and other professionals with disabilities. 
“I’m really hoping the big movie people, the Spielbergs and big time producers and directors, will be like, ‘Now is our chance for authenticity,’ because they were having to watch what all of us have been having to watch during this quarantine,” Forrest said. 
“I don’t want to go back to being the ‘guy in the wheelchair.’ I want to be the lawyer or doctor… the person who just happens to be in a wheelchair.” 
Although strides have been made in recent years, doors have typically been closed for people with disabilities in Hollywood, despite being the largest minority in the United States. A quarter of the population – about 61 million Americans – identify as a person with a disability, according to the CDC. 
According to a GLAAD's 2019- 2020 Where we are on TV report, the amount of regular primetime broadcast characters counted who have a disability was at an all time high of 3.1 percent— but still a severe underrepresentation of people with disabilities in the American population. Then there's the fact that 80 percent of disabled characters on television are portrayed by able-bodied actors, according to the Ruderman Foundation. 
“We’re also fearful, post-pandemic, that people with disabilities won’t be hired because they are considered the most fragile group in terms of COVID-19,” Calla said. 
Rucker agreed, adding, “There may be producers out there and showrunners who suddenly don’t want to take that chance.”
Rucker and Calla aren’t the only advocates trying to prevent this from happening. 
Lauren Appelbaum is the Vice President of Communications for RespectAbility, a nonprofit that works to fight stigmas and advance opportunities for people with disabilities. Over the last three months, RespectAbility has been conducting virtual training sessions for numerous studios in Hollywood, including The Walt Disney Company and Sony Pictures Entertainment. They’ve worked with people in marketing, development and even screenwriters. 
“The fact that these studios are creating these opportunities for their employees to have training during this time is a good thing, because we can talk about how it’s not just the right thing to be disability-inclusive, but also the best thing to do economically,” said Appelbaum. 
The numbers don’t lie: according to Nielsen consumers with disabilities make up a billion-dollar market. When their families, friends and associates are included, that total increases to more than $1 trillion.
“There is money to be made by ensuring disability-inclusive content,” said Appelbaum. 
“People are always looking for new stories, and since there has been so few authentic disability stories told, it’s just a huge option for new material.” 
RespectAbility will also be holding a lab program during the summer for people with disabilities who want to work behind the camera. NBC Universal, The Walt Disney Company, and Viacom are among the studios sponsoring and providing content for the lab. The individuals who take part will be introduced and have the chance to network with industry professionals, with the hope that it will lead to job opportunities for the participants. 
Only time will tell how Hollywood executives handle a post-pandemic reality. In the meantime, filmmakers like McNeil are fighting for their projects to see the light of day. She hopes her film inspires other TV creators and filmmakers to create more inclusive content and make hiring people with disabilities, and writing about disabilities, more mainstream. 
“I am afraid if we don’t make this film, it’ll be years before someone tries again,” McNeil said. 
“But we’re doing everything in our power to get this made.”

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."