Tag: Disability

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Entertainment

Examine Exhibits Extra Incapacity Tales Onscreen, however Few Disabled Actors

Study Shows More Disability Stories Onscreen, but Few Disabled Actors

Let’s start with the good news: The significant representations of disability in film and television programs have almost tripled in the past decade compared to the past 10 years.

However, almost all of these titles still do not include disabled actors.

This is the conclusion reached by a new study published Wednesday by Nielsen and the nonprofit RespectAbility that analyzed the portrayal of disabled characters in film and television shows published from 1920 to 2020.

The titles come from a Nielsen database that contains more than 90,000 films and television shows that premiered in the last century. Of these, 3,000 titles were labeled with important topics or content on disabilities.

Movies fared better than television – about 64 percent (1,800) of depictions of disabled characters were in feature films and 16 percent (448) were in regular series. (The remaining representations were included in other categories such as short films, limited series, television films or specials.) The database also found a significant increase in the number of productions with disability topics from 41 in 2000 to 150 in 2020.

According to the report, about one in four adults in the United States has a physical or mental disability.

A survey accompanying the study also found that people with disabilities are slightly more likely to have problems with depictions of disabled characters. Viewers with disabilities were 8 percent more likely than those who were not disabled to describe a television presentation as inaccurate, and 7 percent were more likely to say that disabled characters are not adequately represented on screen.

Lauren Appelbaum, vice president at RespectAbility, said that although the number of disabled characters continues to grow, about 95 percent of those roles are still being played by actors who have no disabilities.

“When disability is part of a character’s story, content too often positions people with disabilities as someone to pity or heal, rather than portraying disabled people as full members of our society,” she said in a statement.

Several films with disabled characters made headlines with their casting last year: “Sound of Metal”, which tells the story of a drummer (Riz Ahmed) who loses his hearing, has been criticized for casting Paul Raci, a hearing actor who is a child of a deaf adult as a deaf mentor to Ahmed’s character. (Raci said he was comfortable with the casting because his character lost his hearing in the Vietnam War and was not deaf from birth.) CBS’s adaptation of Stephen King’s novel “The Stand” also opposed casting a hearing actor, Henry Zaga, as Nick Andros, a character who is deaf and signed throughout the series.

Last fall, “The Witches,” the Warner Bros. adaptation of the Roald Dahl story, starring Anne Hathaway as the witch with disfigured hands, was criticized for its split-hand resemblance or ectrodactyly, leading to the debate over the portrayal a disability flared up again as evil.

But there were also positive representations, such as Pixar’s “Luca”, which shows a character who was born without an arm and who takes the rare step of depicting a character with different limbs without making it a defining characteristic.

The report, coordinated to mark the 31st anniversary of the Americans With Disabilities Act, is the first in a three-part series by Nielsen and RespectAbility that also analyzes representations of disability in advertising and the media perception of viewers with disabilities. These reports will be published in August.

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Health

Biden says some qualify for federal incapacity assets

Biden says some qualify for federal disability resources

U.S. President Joe Biden signs a proclamation on the anniversary of the Americans with Disabilities Act (ADA), as (L-R) artist Tyree Brown, Sen. Pat Leahy (D-VT), former Rep. Tony Coelho (D-CA), House Majority Leader Steny Hoyer (D-MD), U.S. Vice President Kamala Harris, and House Speaker Nancy Pelosi (D-CA) look on in the Rose Garden of the White House on July 26, 2021 in Washington, DC.

Anna Moneymaker | Getty Images

President Joe Biden on Monday announced that some Americans experiencing long-term effects of Covid may qualify for disability resources and protections from the federal government. 

The announcement came as the president marked the 31st anniversary of the Americans with Disabilities Act in a speech at the White House Rose Garden with Vice President Kamala Harris. It also comes as the long-term symptoms of the virus, what some call “long Covid,” shapes up to be a major public health issue. 

“We are bringing agencies together to make sure Americans with long Covid, who have a disability, have access to the rights and resources that are due under disability law,” Biden said during his remarks.

Under guidance issued by Health and Human Services and the Department of Justice, “long Covid” can qualify as a disability under federal civil rights laws if it “substantially limits one or more major life activities.” 

This means individuals with “long Covid” symptoms that rise to a disability are entitled to resources and protection from discrimination under federal disability laws. An individual assessment is necessary to determine whether a person with “long Covid” qualifies for such protections and resources, according to the guidance. 

“Long covid” describes a wide range of new or ongoing symptoms that can follow four or more weeks after a Covid infection, according to the U.S. Centers for Disease Control and Prevention. This includes tiredness and fatigue, joint or muscle pain, loss of taste or smell and a fever, among other symptoms. 

Some people can also experience damage to multiple organs including the heart, lungs, kidney, skin and brain, according to the CDC. But “long Covid” symptoms are not consistent and it is unknown how many people have the condition. 

The Biden administration also released new guidance that addresses the needs of children with “long Covid” who may have disabilities. The guidance, issued under the Department of Education, outlines how schools and public agencies can provide services to children and students with “long Covid” that rises to a disability. 

Other efforts to support Americans with “long Covid” include a new guidance issued by the HHS that outlines community-based resources for those with the condition, and a new website launched by the Labor Department that includes resources for workers with “long Covid,” such as information on employee benefits. 

Most people who contract Covid recover within a few weeks, but reports of “long Covid” symptoms have been growing amongst Americans. 

Research released by FAIR Health last month found that approximately 23% of nearly 2 million Covid patients have developed at least one “persistent or new” medical condition more than four weeks after their initial diagnosis.

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Health

Erin Gilmer, Incapacity Rights Activist, Dies at 38

Erin Gilmer, Disability Rights Activist, Dies at 38

Erin Gilmer, a disability rights attorney and activist who campaigned for medical privacy, lower drug prices, and a more compassionate health system when faced with a cascade of illnesses that left her unable to work for long periods of time or even left her in bed, died Jan. July in Centennial, Colorado. She was 38 years old.

Anne Marie Mercurio, a friend who had given Ms. Gilmer a power of attorney, said the cause was suicide.

First in Texas and later in Colorado, where she ran her own law firm, Ms. Gilmer pushed for legislation that would better tailor health care to patient needs, including a 2019 state bill that would allow Colorado pharmacists to avoid certain drugs current prescription if the patient’s doctor cannot be reached.

She has been a frequent consultant to hospitals, universities and pharmaceutical companies, bringing with her extensive knowledge of health policy and even more extensive first-hand experience as a patient.

At conferences and on social media, she used her own life to illustrate the humiliations and difficulties she believed were inherent in the modern medical system, where she believed that patients and doctors alike were treated like cogs in a machine.

Her conditions included rheumatoid arthritis, type 1 diabetes, borderline personality disorder, and occipital neuralgia, which causes severely painful headaches. Her long medical record challenged doctors who were used to approaching patients on 15-minute visits, and she said it was often dismissed as “difficult” just for trying to stand up for herself.

“Too often patients have to ask themselves: ‘Will they believe me?'” She wrote on Twitter in May. “’Will you help me? Will they cause further trauma? Will they listen and understand? ‘”

She often spoke of her financial troubles; Despite her law degree, she is dependent on food stamps. But she admitted that her breed gave her the privilege of cutting curves.

“In the months when I couldn’t make ends meet, I dressed up in my pretty white girls’ clothes and went to the salad bar and asked for a new plate as if I had already paid for it,” she said in a speech to a medical doctor in 2014 Conference at Stanford University.

“I’m not proud of it, but I’m desperate,” she added. “It’s about survival of the fittest. Some patients die trying to get food, medicine, shelter, and medical care. If you don’t die on the way, you honestly wish you could because it’s all so exhausting and frustrating and humiliating. “

It could be violent, especially when people presumed to explain their problems to her or offer a quick fix. But she also developed a following among people with similarly complicated health conditions whom she saw as both allies and inspiration and showed them how the system worked for them.

“I used to think I had no choice,” said Tinu Abayomi-Paul, who became a disability rights activist after meeting Ms. Gilmer in 2018, over the phone. “She was the first to show me how to address medicine as an institution and not be written off as a difficult patient.”

Ms. Gilmer emphasized the need for trauma-informed care and urged the medical system to recognize not only that many patients enter the private parts of an already traumatized doctor’s office, but also that the health care experience itself can be traumatizing. Last year she wrote a handbook entitled “A Preface to the Legal Profession: What You Should Know As a Lawyer,” which she made available online for free.

“She expected the system to fail,” said Dr. Victor Montori, an endocrinologist at Mayo Clinic and founder of Patient Revolution, an organization that supports patient-centered care. “But she tried to make it so that the system wouldn’t let other people down.”

Erin Michelle Gilmer was born on September 27, 1982 in Wheat Ridge, Colorado, a suburb of Denver and grew up near Aurora. Her father, Thomas S. Gilmer, a doctor, and her mother, Carol Yvonne Troyer, a pharmacist, divorced when she was 19 and she became estranged from them.

In addition to her parents, Mrs. Gilmer also leaves her brother Christopher.

Ms. Gilmer, a competitive swimmer as a child, began developing health problems in high school. She had jaw and rotator cuff surgery, her father said in an interview, and she also developed signs of depression.

A star student, she graduated with enough credit to skip a year of college at the University of Colorado, Boulder. She studied psychology and economics and graduated in 2005 with summa cum laude.

She decided to continue her education at the University of Colorado law school to keep her student health insurance – “a cruel joke,” she said in a 2020 interview with Dr. Montori. She focused on health law and human rights and trained as both a policy expert and an activist; She later mentioned health as a human right on her blog.

She graduated in 2008 and moved to Texas where she worked for the state government and a number of health care nonprofits. In 2012 she returned to Denver to open her own practice.

At this point, her health began to deteriorate. Her existing condition worsened and new ones emerged, exacerbated by an accident in 2010 in which she was hit by a car. She found it difficult to work a full day, and eventually most of her advocacy was virtual, including through social media.

For all her mastery of the intricacies of health policy, Ms. Gilmer said the system needed more compassion.

“We can do this on a large scale by introducing trauma-informed care as a way to practice,” she said in an interview with Dr. Montori. “And we can do that on the small micro level by just saying, ‘How are you today? I am here to listen I’m glad you’re here. ‘”

If you have thoughts of suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). For a list of additional resources, see SpeakingOfSuicide.com/resources.

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Entertainment

In ‘Luca,’ a Character’s Incapacity Doesn’t Outline Him

In ‘Luca,’ a Character’s Disability Doesn’t Define Him

In a small fishing boat on the glittering Mediterranean Sea, Alberto Scorfano’s eyes land on Massimo Marcovaldo’s right arm, which ends at his shoulder. Massimo catches him staring and Alberto’s eyes pop out. Massimo looks at his shirt sleeve, which is pinned up with a fishhook.

“A sea monster ate it,” he growls.

“Hm? What? ”Alberto gasps.

Massimo relaxes into a laugh. “Mom, no. That’s how I was born. “

He hauls in his fishing net, clamps a lost piece of driftwood between his teeth and slices it out of the net with his left arm.

“Whoah”, Alberto exhales.

This scene, which appears roughly in the middle of “Luca”, the latest Pixar film (streaming on Disney +), takes the rare step of depicting a character with different limbs – without making them a defining characteristic. The story takes place in the fictional coastal town of Portorosso on the Italian Riviera and tells the story of Luca Paguro (voiced by Jacob Tremblay) and Alberto (Jack Dylan Grazer), both young sea monsters who explore the human world.

In Portorosso, Luca and Alberto meet Giulia (Emma Berman), a red-haired outsider who is determined to win the city’s annual triathlon.

Enter Massimo (Marco Barricelli) – Giulia’s single father – an imposing fisherman who sings along with arias on the radio while he cuts off fish heads for dinner. At first glance, his stature and fish spears intimidate the two boys. After the boat scene, however, the tide begins to turn: Luca and Alberto find their way into Massimo’s big heart.

Since the movie was streamed last month, the internet has praised Massimo’s character for skillfully showing a limb difference on screen. The filmmakers said the decision that the fisherman was born with one arm was very deliberate.

“We really thought long and hard about how we could achieve a representation that was true to the place and time,” said director Enrico Casarosa. “When the Massimo idea came up, I think we came up with the idea pretty quickly.”

The film is set in post-war Italy, where Casarosa spent his childhood, and originally the director imagined that Massimo, modeled on the anti-fascist journalist Italo Calvino, fought the Italian resistance during World War II. Maybe he lost his arm in battle, thought Casarosa.

Or maybe he was born that way. To ponder the details of Massimo’s character, the “Luca” team – including Casarosa and producer Andrea Warren – decided to consult with disability rights activist and filmmaker Jim LeBrecht.

“It was a really rich conversation,” said LeBrecht, co-director of the Oscar-nominated documentary “Crip Camp,” which was released last year.

Together they concluded that the line “This is how I was born” felt right. Like Luca and Alberto, Massimo was born differently. The fisherman was skillful with his limbs all his life and remained a loved, respected and vital part of his community.

“Let’s go beyond these tragic stories, these ancient tropics where someone with a disability only appears in a story when it is about their disability,” said LeBrecht. “And let’s do what we’ve done with other marginalized communities over the years and let’s just say, ‘Let’s look, we’re part of the fabric of society.'”

LeBrecht was born with spina bifida, a disease of the spinal cord, and now uses a wheelchair. “Crip Camp” accompanies him and other former summer campers from Camp Jened in New York State, which was created for young people with disabilities, years later through their fight for accessibility laws.

“Jim shared some very difficult stories with people responding to his physical presence and asking children,” Warren said. “But sometimes there is this interaction with children looking or wondering.”

These stories helped shape Massimo’s response as Alberto responded to his disability. And it’s not an uncommon experience for people with limb differences.

Sheriauna Haase, 14, saw “Luca” the day it came out when she and her family were visiting Niagara Falls for Father’s Day. (Her two brothers, ages 4 and 5, had been demanding to see it all day.)

The aspiring high school student and dancer is a congenital amputation; she was born without her left hand. She immediately noticed the fishing boat scene and laughed at the line “A sea monster ate it”. Sometimes she finds her own answer to the question “What happened to your arm?”

“If they stared I’d say, ‘Yeah, I actually got into a shark attack. My arm was bitten by a shark, ”said Haase. “And after that I feel bad because the look on their faces is so shocked and scared. ‘Oh my god, I’m so sorry.’ And I say, ‘No, I’m kidding, I’m kidding. I was just born that way. ‘”

Representation is important to Haase. And with nearly 2 million people living limbless in the United States, Hollywood is starting to take care. But there’s a fine line between organic representation and forced tokenization, as producer Warren pointed out.

“You can’t tick every box on every movie,” she said. “It has to be authentic to make sense. That connection and that recognition won’t happen if it feels like it’s some kind of symbolic addition, something that’s been pushed into it. “

But the authenticity portrayed in films like “Luca” only comes about when people from the communities represented on the screen work behind the camera. Every week, LeBrecht hears stories from and about the disabled community that could make for engaging television and film.

“The industry needs to make the same diversity and inclusion efforts that it has made for other marginalized communities towards the disabled community,” LeBrecht said. “It’s not a wish. It’s not a charity. It’s good business. “

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Health

Karen Killilea, 80, Dies; Turned Incapacity Into Triumph

Karen Killilea, 80, Dies; Turned Disability Into Triumph

When Karen Killilea was born in 1940, she was three months early and weighed less than two pounds. She spent her first nine months in a newborn intensive care unit.

When she finally returned to the family home in Rye, NY, her parents noticed that her limbs were particularly stiff, she never rolled over in her crib, and she did not reach for toys that dangled in front of her. Babies born this early rarely survived back then. Doctors told Karen’s parents to institutionalize her and get on with their lives.

That was the last thing James and Marie Killilea (pronounced KILL-ill-ee) would do. Far from forgetting Karen, they went to the United States and Canada to seek medical specialists who could help her. They saw more than 20 who all said Karen’s case was hopeless. One told them that in China, a child like Karen would be left behind on a mountain top to die.

They eventually found a doctor in Baltimore who recognized Karen’s intelligence, saw that she was aware of her surroundings, and discovered that she was suffering from cerebral palsy. With relentless dedication, her family spent at least two hours each day for the next 10 years helping Karen move her limbs, and eventually she triumphed over her prognosis.

In her early teen years, she walked on crutches, swam, typed, and went to school.

And she was 80 years old.

She died on October 30th in Port Chester, NY, in Westchester County, north of New York City. Her sister Kristin Viltz said the cause is a respiratory disease that leads to heart failure.

Marie Killilea told the world in two bestselling books about her daughter who was one of the first to detail the challenges of life with severe physical disabilities and who inspired many families in similar circumstances.

The first, “Karen” (1952), showed how she and her family had worked to overcome the odds against them.

Among the glowing reviews for “Karen” that has been translated into several languages ​​was Saturday’s review: “Extraordinary is the word that is used first, last, and repeatedly throughout this book. Anyone who meets Karen on paper will postpone the resignation of humanity. “

The sequel “With Love From Karen” (1963) followed Karen into young adulthood. Marie Killilea also wrote “Wren” (1981), a version of “Karen” for children.

Karen Killilea worked as a receptionist at Trinity Retreat House in Larchmont, New York for four decades. She traveled to Italy twice and both times met semi-privately with Pope Paul VI.

She was determined to show that her disability hadn’t limited her. Her activities included conducting obedience training for dogs. She had a particular preference for Newfoundland dogs, who were much taller than Karen, who was barely three feet tall and weighed only 65 pounds.

“She was the most independent person you can imagine,” said Ms. Viltz, her sister, in a telephone interview.

She never considered herself “disabled,” her sister said, calling herself “persistently harassed” instead.

Karen Ann Killilea was born in Rye on August 18, 1940. Her father was an executive with the New York Telephone Company; Her mother was a housewife.

Karen attended the Notary Lady of Good Council Elementary School in the nearby White Plains. With the support of her older sister Marie, who was a few grades ahead of her at the same school, Karen received good grades and graduated from eighth grade in 1959. She attended the academy’s high school in the middle of the tenth grade, but stopped after Marie went to college.

“Karen was a legend,” said Sister Laura Donovan, a former high school headmistress who studied there for several years after Karen.

“From what I heard, this young woman had great courage and determination,” said Sister Laura in a telephone interview. “She came to a non-disabled school and I never heard anyone say that she ever wanted special treatment.”

When Karen’s parents in Albany began advocating for the rights of the disabled, they met many other parents of children with disabilities who were desperate for information and wanted to share their own experiences. This led to the formation of what is now cerebral palsy in Westchester. Marie Killilea, along with other parents and volunteers, later founded what became known as the United Cerebral Palsy Association.

When her parents died (her mother in 1991, her father in 1994), Ms. Killilea was living independently, first in a rented apartment in New Rochelle and then in an apartment she bought in Larchmont.

Her survivors include her sisters Kristin Viltz and Marie Killilea Irish, as well as a brother, Rory Killilea.

After the books appeared, Karen and Marie Killilea were inundated with mail from around the world and answered at least 15,000 letters. Some were simply addressed to Karen, USA and still arrived.

Many wrote to thank the family for telling their story and to say that it had inspired them to become nurses or physical therapists or occupational therapists. Some readers even appeared on the family porch, eager to meet this “child prodigy,” as their mother called them, and to share their own situations.

In later years readers took part in online discussions about them. Many who noticed that the book Karen was about Karen and not about her longed to hear their own account in their own voice.

But she really valued her privacy and never gave interviews or wrote her own book. She declined almost all invitations to speak, including one from her old school to address the students, Sister Laura said.

Still, her voice appeared to some extent in her mother’s second book. After Karen experienced the freedom that came with using a wheelchair and decided that she would prefer to hobble around on crutches, which she found painful, her mother quoted her as saying:

“I won’t be a dull, slow little sparrow jumping around with my head bowed. I’ll be free, really free I will be an eagle with its face turned towards the sun. “