Tag: Disabled

Categories
Health

How Disabled Individuals Are Pushing to Overhaul a Key Advantages Program

How Disabled Americans Are Pushing to Overhaul a Key Benefits Program

Once, this recipient said she was too sick to leave home for two months, and as her daily expenses fell, her account balance went from just under $ 2,000 to $ 2,135 without her realizing it. When the Social Security Agency found out about this, they had to repay all of their SSI benefit for those months, which lasted two years.

The organizers of #DemolishDisabledPoverty also want Congress to increase funding for home and community-based services; Abolish a law that allows companies to pay some disabled workers far less than the minimum wage; and update Social Security Disability Insurance or SSDI which is different from SSI but has many similar limitations.

Melanie Waldman, 30, who has lupus, Ehlers-Danlos syndrome and an amputated arm, has been unemployed since she left a job that she said “destroyed my body”. She receives about $ 800 a month from SSDI

She has a background in theater and said she wanted to pursue roles but would have to ask for a lower salary. She is allowed to make $ 10,000 a year in external income and, prior to joining SSDI, earned about $ 13,000 from acting. Although SSDI pays less, she cannot afford to lose it as it would mean loss of health care.

Mr Cortland said the current legislative initiative is focused on SSI because it can be changed through a budget reconciliation while SSDI cannot legally. But he stressed on the virtual forum last week that proponents would also be working to improve SSDI

The forum, organized by the Century Foundation, was attended by Mr. Bowman and Rep. Ayanna Pressley, a Massachusetts Democrat, who both urged the 17,000 or so audience to put pressure on Congress and the White House.

Categories
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.

Categories
Health

Ford and Mellon Foundations Increase Initiative for Disabled Artists

Ford and Mellon Foundations Expand Initiative for Disabled Artists

The Disability Futures initiative, a fellowship established by the Ford and Andrew W. Mellon Foundations last fall to support disabled artists, is expanding. The foundations announced on Friday that they will commit an additional $5 million to support the initiative through 2025, which will include support for two more cohorts of 20 fellows.

The fellowship, which was created by and for disabled individuals, was conceived as an 18-month initiative. It provided 20 disabled artists, filmmakers and journalists, selected from across the United States, with unrestricted $50,000 grants administered by the arts funding group United States Artists.

But Margaret Morton, the director of creativity and free expression at the Ford Foundation, said it was clear from the beginning that it couldn’t just be a one-off venture.

Projects undertaken by members of the first cohort will be showcased at the first Disability Futures virtual festival, on Monday and Tuesday, with programming from some of the country’s leading disabled artists, writers, thinkers and designers. It is free and open to the public.

Among the highlights: A session on disability portraiture with the filmmakers Jim LeBrecht and Rodney Evans, the painter Riva Lehrer and the journalist Alice Wong; a conversation exploring the connections between climate justice and disability justice led by Patty Berne; and a virtual dance party hosted by the garment maker Sky Cubacub, with music by DJ Who Girl (Kevin Gotkin). Evening runway performances from models wearing items from Cubacub’s Rebirth Garments and a meditation experience with the initiative Black Power Naps, featuring Navild Acosta and Fannie Sosa, are also on tap.

“It’s been really profound for me to see how much the fellows chosen in the first cohort were interested in elevating others in the community,” Emil J. Kang, the program director for arts and culture at the Mellon Foundation, said in an interview on Thursday.

The next class of fellows will be announced in 2022. They are chosen by peer advisers who are themselves disabled artists.

But the feedback from the first class, Morton said, was frank: Do even better in the selection process.

“One of the fellows challenged us,” she said, about there being only one Native American fellow. “And we appreciated that and were challenged to get it right and make sure we have a deeper pool.”

The grants offer flexible compensation options. The money can be distributed in a lump sum, in payments or even be deferred, depending on what works best for the artist.

The fellowship “has made an incredible difference in my life and career,” the writer and photographer Jen Deerinwater said in an email. “It’s allowed me more financial freedom, without the risk of losing my disability and health care services, to pursue more artistic pursuits such as music.”

The pandemic has made foundation leaders “deeply aware” of the challenges disabled professionals face, Morton said. About one in four adults in the United States has a disability, according to the Centers for Disease Control and Prevention.

“We gained a deeper impression and perspective about what it’s like to navigate through the world,” she said.

The program’s overarching goal is to help the artists make connections, Morton said.

“Our biggest dream is visibility,” she said. For audiences to see the artists and for funders to see that “they should start investing in disabled practitioners.”

Categories
Health

How a Nursing Scarcity Impacts Households With Disabled Kids

How a Nursing Shortage Affects Families With Disabled Children

Many had placed their hopes on the Biden government’s infrastructure plan, which would allocate $ 400 billion to improve home and community care. But with the President and Republicans arguing over the scope and scope of the proposal, it is unclear whether that part will survive.

Parents, meanwhile, are increasingly carrying an inexorable burden alone.

A nurse who cares for a medically weak child at home has the same duties as in a hospital, but no emergency medical assistance. It’s a tightrope, and experts say prevailing wages don’t reflect the difficulty.

Federal guidelines allow state Medicaid programs to cover home care for eligible children regardless of their families’ income, as the price of 24/7 care would ruin almost anyone. But states generally pay nursing staff at much lower rates than they would for equivalent care in a hospital or other medical center.

“They’re effectively setting a benchmark for employee compensation that puts this area at a competitive disadvantage,” said Roger Noyes, a spokesman for the New York State Home Care Association. In return, government-approved home health insurers that provide nursing families with nurses pay meager salaries and rarely offer health insurance or other benefits to the nurses they employ.

Although home care is better suited to medically ill children, hospitals get about half of Medicaid spending on these cases, compared with 2 percent on home care, studies show.

And Covid-19 created competing demands on care that further reduced the number of home care workers. In light of the pandemic, the state’s largest healthcare provider, Northwell Health, hired 40 percent more nurses in 2020 than the previous year, and hired 1,000 additional temporary nurses once the local hiring pool ran out.

Robert Pacella, the executive director of Caring Hands Home Care, the agency that oversees Henry’s case, noticed the change in January as nurses began reducing shift opportunities and decreasing new applicants.

Categories
Health

Edith Prentiss, Fierce Voice for Disabled New Yorkers, Dies at 69

Edith Prentiss, Fierce Voice for Disabled New Yorkers, Dies at 69

Edith Prentiss, a fiery disabled attorney who struggled to make the city she loved more navigable for all, died on March 16 at her home in the Washington Heights neighborhood of Manhattan. She was 69 years old.

The cause was cardiac arrest, said her brother Andrew Prentiss.

In 2004, the city’s taxi fleet had only three wheelchair-accessible taxis – minivans with ramps – and people like Ms. Prentiss had less than one in 4,000 chances of calling one. “They’re like unicorns,” she told the New York Times earlier this year. “You have to be clean to catch one.”

The number of vehicles available would eventually increase to 231, but it took nearly a decade and a class action lawsuit – of which Ms. Prentiss was the plaintiff – before the city’s taxi and limousine commission agreed to make the fleet 50 percent accessible by 2020. (This deadline has been postponed due to the pandemic and other issues; the fleet is now 30 percent.)

Ms. Prentiss also fought for accessibility in subways and in police stations, restaurants and public parks. And she fought on issues that did not directly concern her, such as those that could hinder people with intellectual, visual, acoustic, or other disabilities.

When the city held a hearing in 2018 on banning plastic straws, a matter close to environmentalists but not the disabled community, they made sure a group was put together and an opinion was given. There are those who cannot hold a cup the group wanted to point out, and straws are an essential tool when visiting a restaurant.

At the meeting, group after group testified in favor of the ban. But Ms. Prentiss and her colleagues were not called.

“It’s hard to miss us – most people are in wheelchairs,” said Joseph G. Rappaport, executive director of the Brooklyn Center for Independence of the Disabled and communications and strategy director of the Taxis for All Campaign. Prentiss was the chair, “but it went on and on and finally Edith had it. She said, “Hey, we’re here to speak. We have an opinion on this bill. ‘“The group was allowed to speak.

“She worked inside, she worked the angles, and when she had to scream, she did,” added Rappaport. “And she did well.”

She was bristle and relentless and always prepared. Woe to the city officials who failed to keep their promises or did their homework. She knew up to an inch how long a ramp was and how high a curb should be cut. She drove her motorized wheelchair while she spoke with tremendous confidence and sometimes a little deliberate recklessness; She wasn’t overwhelmed with riding the toes of anyone in her way.

Among the many New York officials who made statements about Ms. Prentiss’s death were Gale Brewer, president of Manhattan District, and, in a joint statement, Mayor Bill de Blasio and Victor Calise, mayor’s commissioner for people with disabilities.

In May, Ms. Prentiss will be inducted into the New York State Hall of Fame for Disability Rights, and Mr. Calise will appear in her place at the virtual ceremony.

“She was brilliant,” Ms. Brewer said in a telephone interview. “She didn’t take any prisoners. She skipped the finer points, but her heart was so generous. “

Edith Mary Prentiss was born on February 1, 1952 in Central Islip, NY, on Long Island. She was one of six children (and the only daughter) of electrician Robert Prentiss and social worker Patricia (Greenwood) Prentiss.

Edith was an asthmatic and later a diabetic. She started using a wheelchair when her asthma became severe when she was in her late 40s.

After graduating from Stony Brook University on Long Island with a degree in sociology, she attended the College of Art and Science at Miami University, Ohio.

Early in her career, Ms. Prentiss was an outreach clerk for ARC XVI Fort Washington, a senior services center. She worked at the Port Authority’s bus station, doing blood pressure tests, and helping elderly people apply for city services and other benefits. She later worked with Holocaust survivors. Fern Hertzberg, the executive director of ARC, said Ms. Prentiss’ last job before she retired around 2006 was at a physical therapy center in her neighborhood.

Ms. Prentiss was president of the 504 Democratic Club, which focuses on disability rights, and has held positions with many other interest groups.

She was not only known for her strong arms. Years ago, Susan Scheer, now the executive director of the Institute for Career Development, a working and training group for the disabled, was a government official in New York City, and she met Ms. Prentiss the usual way: being yelled at in hearings. But when Ms. Scheer, who suffers from spina bifida, started using a wheelchair about a decade ago, she called Ms. Prentiss for help. She realized she had no idea how to navigate the bus from her East Village apartment to her town hall job.

“Don’t worry,” she remembered Ms. Prentiss. “I am on the way.” (It took a while, with the usual obstacles like broken subway elevators.)

Once there, Ms. Prentiss led Ms. Scheer out of her building and through the growl of traffic on 14th Street, blocking the vehicles that threatened her as she trained Ms. Scheer through her first bus launch which was rocky. As she ping-pong down the aisle, she ran over the driver’s toes. “Not your problem,” Mrs. Prentiss called from behind her.

Ms. Prentiss then instructed the less enthusiastic driver to secure Ms. Scheer’s chair (the drivers are not always diligent at this step). And when the passengers groaned and rolled their eyes, said Ms. Scheer, Ms. Prentiss stared at them and announced: “We’re learning here, folks. Let’s be patient. “

On her extensive travels, her brother Andrew said, Ms. Prentiss has had many road accidents and was hit by numerous vehicles, including taxis, a city bus, and a FedEx truck. She was often in the emergency room, but if there was a community board meeting or hearing in town, she made sure to call from the hospital.

In addition to her brother Andrew, her other brothers Michael, Robert Anthony, William John and David Neil survive.

In early January, Ms. Prentiss received her first dose of the Covid-19 vaccine at the Fort Washington Armory. Needless to say, she had some ailments when she told Ms. Hertzberg: The pens used to fill out the health questionnaire were known as golf pens and were too small for people with certain manual disabilities. The writing on the questionnaire wasn’t big enough. And the chairs in the waiting area after the vaccination didn’t have arms that many people can use to stand up.

She called the hospital that administered the program there – and Ms. Hertzberg said you can be sure that it would not take long to fix the problems.

For the past three years, photographer, writer and filmmaker Arlene Schulman has been working on a documentary entitled “Edith Prentiss: Hell on Wheels,” a title that originally addressed the subject. She didn’t think it was strong enough.

Categories
Health

Christina Crosby, 67, Dies; Feminist Scholar Wrote of Turning into Disabled

Christina Crosby, 67, Dies; Feminist Scholar Wrote of Becoming Disabled

Christina Crosby, an athletic woman who had just turned 50, was three miles on her cycling program near her Connecticut home when her front spokes caught a branch. The bike stopped and threw Dr. Crosby on the sidewalk. The impact hit her face and snapped at her neck. Immediately she was paralyzed for the rest of her life.

That was in 2003. She lost the use of her leg muscles and much of her upper body. But over time, she regained limited function in her arms and hands. And two years after the accident, she returned to work part-time as a professor of English literature and feminist studies, gender and sexuality studies at Wesleyan University in Middletown, Conn.

Finally – by dictating with speech recognition software – she was able to write a treatise: “One body, undone: Live on after great pain” (2016). It was an unsentimental examination of what she called the “surreal neurological wasteland” that she was poured into, and that forced her to search for her self-esteem.

In bottomless grief over everything she had lost, Dr. Crosby preserved her intellect and her ability to speak. Yet sometimes her pain was beyond the reach of language.

“I feel an unassailable loneliness,” she wrote, “because I will never be able to adequately describe the pain I am suffering, nor can anyone accompany me into the realm of pain.”

Late last month she was hospitalized in Middletown with a cystitis and learned she had pancreatic cancer, her partner Janet Jakobsen said.

Dr. Crosby died a few days later, on January 5th. She was 67 years old.

In her book, Dr. Crosby, to learn proper lessons about overcoming difficulties, or to come wiser from their disastrous injury. That made it a prominent text in disability studies and activism.

The typical disability narrative “leads the disturbed subject through painful exams to livable accommodation and lessons learned, and all too often the note sounds triumphant,” she wrote. “Don’t believe it.”

Christina Crosby was born on September 2, 1953 in Huntingdon, rural central Pennsylvania. Her father, Kenneth Ward Crosby, was a professor of history at Juniata College, where her mother, Jane (Miller) Crosby, taught home economics.

Christina was athletic as a child. She and her older brother Jefferson were age-related and physically competitive.

Christina attended Swarthmore College, where she majored in English and graduated in 1974. She wrote a column for the student newspaper called “The Feminist Slant” and helped found Swarthmore Gay Liberation. As a strange feminist, she remained committed to social justice and sexual liberation throughout her life.

She studied at Brown University in Providence, RI, where she completed her PhD in English in 1982. There she was part of a socialist feminist caucus that dealt with issues such as domestic violence. She and the caucus set up a hotline for abused women and established a women’s shelter called Sojourner House in 1976, one of the first of its kind in the country.

During this time she met Elizabeth Weed, then director of the Sarah Doyle Women’s Center in Brown, where the feminist caucus was holding its meetings. They were partners for more than 17 years and continued their relationship long after Dr. Crosby went to Wesleyan in 1982. Dr. Crosby’s papers are said to be kept at the Pembroke Center in Brown.

Dr. Crosby’s dissertation with Brown became her first book, “The Ends of History: Victorians and ‘the Woman Question'” (1991), which examined how Victorian literature excluded women from public life and raised questions about how history is told .

Though hired by Wesleyan’s English department, Dr. Crosby became a central part of the university’s women’s studies program, which she established as a major and later redesigned as a feminist, gender and sexuality study.

“She was the heart and soul of this program for decades,” said Natasha Korda, an English professor at Wesleyan University, in an interview.

“She was also a rock star on campus,” she added. “She was charismatic and lively, she had so much energy and she cut a very dashing figure.”

The students loved her, said Dr. Korda because she could make complex theoretical arguments “crystal clear” and because “she was not only an incredible storyteller, but also a great conversationalist”.

In the early 1990s, one of her students was the writer Maggie Nelson, whom Dr. Crosby advised on her thesis on denominational poetry. Dr. Crosby initially had little regard for denominational writing, but she later credited Ms. Nelson for opening her eyes to her worth when she began writing her memoir.

In 2003 the university faculty selected Dr. Crosby as chairman of the faculty. She chaired meetings and represented her colleagues in meetings with the President and the Board of Trustees.

She had just started her year-long tenure in this position when she had her bicycle accident. “Your life was brilliant,” said Dr. Jakobsen, Professor of Women, Gender and Sexuality Studies at Barnard, who has been Dr. Crosby’s partner and is her only immediate survivor. “Christina was a person who burned very brightly.”

In an eerie parallel, Dr. Crosby’s brother Jeff, an attorney with whom she was always closely associated, was multiple sclerosis in his twenties and quadriplegic in his late 40s. She wrote in her memoir that after her accident, her childhood fantasy of being her brother’s twin – Dr. Weed had once referred to them both as “beautiful physical specimens” – “was maliciously recognized because there we were, each with seriously incapable damage to the central nervous system, each in a wheelchair. “

Mr Crosby died in 2010 at the age of 57. It was his death, seven years after her accident, that Dr. Got Crosby to begin her memoir. It was unanimously chosen by a committee of Wesleyan students, faculties, and staff as the book all incoming students would read in 2018.

Towards the end of the book she wrote about the struggle between the fear that she would stop to mourn her past life, which would mean that she would “have come to terms with my deeply changed body” and the fear that she would not stop to grieve, a sign that she refused to move on and perhaps didn’t want to live.

“To move on, I have to actively forget who I was,” she concluded. “I am no longer what I used to be – and yet I no longer think about it. All of us who continue to live are not what we were, we will, always will. “