Tuesday, March 28, 2017
Thursday, March 9, 2017
Ruderman Family Foundation challenges TV content creators to audition, cast more actors with disabilities this pilot season
From the Ruderman Family Foundation:
The Ruderman TV Challenge was designed to continue our work in Hollywood and advocate for greater inclusion of performers with disabilities. At a time when the discussion around the need for greater diversity in Hollywood is garnering great attention, disability is still being left out. But disability is a fundamental part of the human experience and needs to be included in depictions of diversity.
This project by the Foundation builds on the widely–covered Ruderman White Paper on the Employment of Actors with Disabilities, a study which found that only 5% of all characters with disabilities on screen were portrayed by performers with disabilities. It also comes as the next step after we hosted the Ruderman Studio-Wide Roundtable on Disability Inclusion in Los Angeles attended by around 200 industry insiders this past November.
The context that demonstrates the need for more inclusion of people with disabilities on screen is self-evident. Approximately 20% of people have a disability, which makes them the largest minority in the U.S. However, depictions of disability in film and television are consistently around or under 2% of all characters—a statistic that shows a staggering discrepancy of representation.
What we’re asking is a simple request for television content creators to audition and cast more performers with disabilities this pilot season.
As pilots are still being announced and filmed, several roles remain to be cast. While it would be great to have far more performers with disabilities in principal roles, we challenge content creators to raise the visibility of the disability community in a much lower-stakes, higher-impact approach: cast any minor role or even background character as a person with disabilities. Do you still need to fill the role of the bank teller or the woman taking her dog for a walk in the background? Audition talented actors who are wheelchair-users, or amputees or any other disability.
We will track the pilots this season and study the results of this challenge to learn which show and/or network excels in its commitment to inclusion and diversity. The results will be published in advance of the 2017 Emmys.
How can this be done?
Scripted shows like Speechless, NCIS: New Orleans and Switched at Birth for example are authentically portraying disability and successfully demonstrating not only that there are incredibly talented performers who are people with disabilities, but that audiences embrace these characters. Audiences are hungry for representation of themselves and their family members on screen. Television has the power to shatter disability myths.
For this project we have teamed up with two remarkable industry influencers: Daryl “Chill” Mitchell, a long-time advocate of diversity and inclusion, producer, and actor well-known for his current role in the CBS hit NCIS: New Orleans. And with Tari Hartman Squire, the creator of Lights! Camera! Access! 2.0 Collaborative, a veteran of the disability inclusion movement in Hollywood and the builder of school-to-screen pipelines for inclusion.
With her help we have compiled a list of resources to get you started. If you have any questions, please contact Kristina Kopic, the co-author of the Ruderman White Paper on the Employment of Actors with Disabilities, and one of the collaborators of the Ruderman TV Challenge. You can reach her at firstname.lastname@example.org
Disability-Inclusive Diversity Resources:www.breakdownexpress.com http://changingthefaceofbeauty.org http://www.disabilityfilmchallenge.com www.adalegacy.com/DisBeat www.glaad.org http://inclusioninthearts.org https://www.clintonfoundation.org/clinton-global-initiative/commitments/light-camera-access-20 www.EINSOFcommunications.com http://mediaaccessawards.com www.meetthebiz.net https://www.sagaftra.org/content/committees http://www.wga.org/the-guild/advocacy/diversity
Posted by BA Haller at 8:19 PM
Wednesday, March 8, 2017
A column from Helen Keller, called “Women and Peace” that she wrote for Home magazine in February 1930. (Read more of Keller's essays in Byline of Hope from the Advocado Press.)
We are standing on the threshold of the New Year. The world goes on from year to year with its burden of suffering and misery that need not be.
Some of us are asking ourselves if the time has not come for women to put the world-house in order. We are weary of groping among the shadows of old sins! We want more light, more life, more love! Above all, we want peace—peace of mind, peace in the world.
Since the beginning of history women have dreamed of a day when the Dove of Peace should descend upon the world, and no one should make them afraid. That day has always been postponed, defeated, the lovely vision retreating with their retreat and advancing with their advance. Always the women, the sweethearts, the young wives and mothers have looked forward to that day, mocked at by the old, the politicians, the militarists. The sacred, perfect world of love and harmony has ever seemed like a spirit without a body; but it has lived on in the hearts of profits, seers and women, and that which liveth shall take shape and stand forth incarnate, manifest unto all eyes.
I believe that the idea of peace is more alive in our hearts today than ever before. We do not need to go to the Scriptures of the sages of a thousand years to find it. It is within us. We contain all things—the past with its hate, cruelty and greed; the future radiant with the hope of a world where the nations shall be in love with each other, without fear and without danger; and the present in which to work, and bring strong desire to renew and reorganize our habits. Ours is the mission of universal peace, since in us alone is the life of the generations. Let us, then, resolve, while we ache with the memory of lovers, husbands and sons dead, that no more battlefields shall be covered with their young bodies. Peace will not begin until women everywhere make the idea of peace live in their home talk, their books, their art and their lives.
She should say not, then, “I am only one woman, I can do nothing. Men make war and peace, it is their affair, not ours.” True, men have been the masters of the world—the autocrats of statecraft; but, what have they done to put the world-house in order? Have they not imperiled the human race with their diplomacy?
Let us not be deceived by talk about war to end war. That is propaganda which closes the mind and prevents education from opening it to the facts. Violence does not, and never will, yield to violence. There is a great, vibrant renaissance coming through women. They will not continue to tolerate the old hateful things their eyes have opened upon New Year after New Year.
When women in all lands are fully awake to their missions, their efforts will ensure the final triumph of justice. They can do more than any conference of diplomats to help usher in the dawn of a new era of good-will and peace and righteousness. When such patriotism is taught in our schools and churches, there shall arise the warm, throbbing, one-hearted Empire of Brothers.
Posted by BA Haller at 4:55 PM
Saturday, February 18, 2017
Nick Dupree, 34, died at New York Presbyterian Hospital February 18, 2017. A true Renaissance man, Nick fought for Medicaid reform in his home state of Alabama before moving to New York City in 2008, where he continued blogging about the issue at Nick’sCrusade, as well as writing, painting and creating comics. (The painting to the right is one of Nick's self-portraits.)
Stone Brook University Disability Studies professor Pamela Block, who worked with Nick through the VENTure Think Tank that focuses on the needs of people like Nick who are dependent on ventilators, said: “He dared. He persisted. He defied. In the end, it wasn't his will or even his body that failed him, it was the system that betrayed him by sending him again and again into places that were deadly to him.”
Nick also gained national social media attention when he and his partner decided it was safest to stay in their 12th floor apartment in lower Manhattan when Hurricane Sandy hit NY City in 2012. In addition to people on social media rallying to make sure Nick and his partner were safe, their experience brought national attention to the inadequacy of New York City's disaster preparedness for people with disabilities. NPR's Talk of the Nation devoted a show to the problem. New Mobility magazine wrote about the issue and featured Nick in a 2013 cover story.
Here are links to Nick’s writings and artwork:
Wynn Newhouse Awards
Bunnies in Space comic
Wikipedia page about Nick Dupree
Nick's YouTube channel
Instead of a formal obituary, I will let Nick tell his own story.
Instead of a formal obituary, I will let Nick tell his own story.
Nick Dupree’s story:
“I’m Nick, a disability rights and Medicaid reform activist, writer, comic creator, painter…. I’ve been advocating for ending the institutional bias and other long-term care reforms for years. I fight especially hard for awareness and action on issues that affect those of us who, like me, have complex care needs and are vent-dependent. We are a vulnerable population that spans multiple diagnoses and every age group, and, to stay in our homes and communities, we need change in long-term care.
I was born with a super rare metabolic disease, as was my younger brother Jamie. I’ve been on various forms of life support since age 9 when an infected surgical site—the destructive Luque rods surgery occurring on Friday, September 13th, 1991—triggered a crash, a “metabolic domino effect” that killed what little muscle tone I’d had previously. I got my first feeding tube in October 1991, my first vent in February 1992 (full-time BiPap) then was trached and vented in November 1994.
I grew up in and around the Spring Hill College campus in Mobile, Alabama, where I studied from Fall 1998 when I entered at age 16, until 2005. The Jesuits’ social justice teachings heavily influenced me.
I’m most known for my two-year campaign to change Medicaid in Alabama, dubbed “Nick’s Crusade.” It has, I hope, created a positive ripple effect.
Then, as now, states were required to care for kids, but once you hit age 21 (too often) you’re cut off. I call it Medicaid’s 21 cut-off. “Aging out” of home care needed to survive and thrive, have a life and stay outside of institutions, though widely ignored, is an ongoing defect in our system that’s actively harming people who are usually the least equipped to
bribe lobby the powers that be, to speak
out. So much preventable harm is not prevented because the state Medicaid
system (in whichever state you’re in, varying wildly)
is so purposefully bare bones or too slow to adapt.
This is such a dire problem in many (especially Southern) states, particularly for those of us who are the most severely disabled, on “life support,” as we tend to be marginalized, looked on as “vegetative” or borderline not “here.”
That someone died due to their home care getting yanked because of an arbitrary age cut-off, the 21 cliff , in America, in the 21st century, should shock you. It points to a broken gov’t, broken health care models, broken state-to-state Medicaid systems, broken nonprofit sector, broken ideologies that do not account for the realities of human frailty, disability, chronic illness and what these really mean day-to-day, the sheer funk and squishiness inherent to mankind, political brokenness in the South, and a deep spiritual brokenness and hardness of heart writ large. I agree with certain religious thinkers on the Right that America needs a change of heart not just a change of regime, not just more funding for X, Y, Z, but insist care for the most disabled be expected in any virtuous system. I want the meanness of spirit that’s spread like a virus to change first and foremost, and for the concept that we are all images bouncing from the same prism, we are all tentacles of the same divine octopus, to replace the hate.
In the Southern states, long-term care in the home, and more broadly, Medicaid—the only source of such care for most people—is more hotly disputed than in the North. To put it mildly.
Alabama Medicaid Agency had no plan for continuing home care for people beyond age 21, even for the most severely disabled ventilator-dependent Alabamians. By January 2001, too many other vent-using young adults had already received their bloodless form letter or slip with computer code from Montgomery announcing the “termination” of their life-sustaining care, and had “aged out” of federally-mandated EPSDT care, and been dropped by home care just for turning 21, put in awful positions.
Seeing the writing on the wall, I launched “Nick’s Crusade” in March 2001 soon after my 19th birthday. I appeared in the following WPMI-TV Mobile, AL local news feature “Nick’s Crusade” August 2nd, 2001.
Another story on WPMI aired autumn 2002, Bruce Mildwurf reporting on what happened to the Morris family after Alabama Medicaid arbitrarily ended care for Patrick, who has Duchenne’s MD and depends on a ventilator to breathe too, when he turned 21. Nonetheless, the Alabama legislature balked at any proposals to deal with the 21 cut-off problem. Medicaid’s legislative liaison had home field advantage in Montgomery, up and down the halls of power week after week vs. my infrequent visits up I-65, and she constantly lobbied the relevant committees not to spend on home care, touting ridiculously inflated cost estimates. The proposed Nick Dupree Adult Care Act never made it onto the Alabama Senate floor. No action was taken. The reprieve for me, (younger brother) Jamie, and future vent-dependent Alabamians reaching 21 came not from the politicians, but from newly appointed federal Judge Mark Fuller, who compelled Alabama Medicaid to fix the issue.
On February 10, 2003, U.S. HHS secretary Tommy G. Thompson announced approval of Alabama Medicaid’s waiver program that’d fund in-home services for 30 vent-dependent people hitting the 21 cliff in the future. After the feds quickly greenlit the program—the uncharacteristically speedy end to the labyrinthine CMS waiver approval process coming largely thanks to the committed efforts of Mobile’s then-U.S. House Rep. Jo Bonner—it was kicked back down the line to Medicaid in Montgomery, and they had to iron out the details and the implementation. They eventually did… at the 11th hour before I turned 21 on February 23rd, 2003. The program has since expanded to help more people, but initially only covered me. The TA (Technology Assisted) Waiver was created for the care of Alabamians on mechanical ventilation, and endures, as do we.
My advocacy and eventual plea in federal court in Montgomery led to local and national coverage of my fight to maintain a life outside of hospitals and other institutions, and the fights of others on vents.
Independence from institutional models of care remains so important, socially, spiritually, medically, in every area. Though it can be extremely difficult maintaining in-home care day-to-day, staying healthy and in the community is pivotal. I continue advocating for those of us, who, like me, have complex and intensive needs, to be allowed the in-home support necessary to stay out of high-risk hospital settings. People misunderstand… I was talking survival, and they were talking rights, independence, more abstract concepts.
Community is survival. The greater the medical needs, the greater the necessity to hold fast to kith and kin, to have a circle of support protecting and looking out for you.
My primary skill-set is in writing. I come out of the Spring Hill College writing program, where I gravitated toward creative nonfiction and poetry. Though problems maintaining nursing care in the wake of my “victory” in the Medicaid battle prevented me from completing my degree at the Jesuit college, I’ve never stopped writing.
Since August 28, 2008, I’ve lived in New York City alongside/with my partner Alejandra – first, in Coler-Goldwater state rehab hospital (for 378 days), and later, at home in our community.
I have continued creating both fiction (online comics I paint with the trackball mouse, such as Theodore Roosevelt and the Rough Riders vs Zombies, and Bunnies in Space) and nonfiction (essays on history, politics, and health care). One of my essays, on the impact of cuts in the federal budget and universal health care as a human right, was published as part of Greenhaven Press’ reference volume Health Care: Opposing Viewpoints in 2008.
Dive into my writing, diaries, op-eds, reports on the past and present; there are over 300 entries, many reflective long-form pieces. Begin exploring the blog posts here: List of My Must-Read Posts about Health Care
or here: The Coler Chronicles: Collected Bloggings of the Institution Days.”
or here: The Coler Chronicles: Collected Bloggings of the Institution Days.”
Posted by BA Haller at 8:20 PM
Monday, January 23, 2017
From Search Engine Land:
Google Doodle pays tribute to Ed Roberts, an early leader of the disability rights movement and co-founder of the World Institute on Disability.
After contracting Polio at age 14, the disease left Roberts paralyzed from the neck down. In spite of spending the rest of his life in a wheel chair and unable to breath without a respirator, Roberts fought for his rights – starting in high school when he was told he wouldn’t receive his diploma because he had failed to complete phys-ed and driver’s ed requirements.
Roberts petitioned his school and was awarded his diploma. He went on to be the first University of California Berkley student with severe disabilities.
The Google Doodle Blog on Roberts shared the following quote from Roberts’ mother, Zona: “I watched Ed as he grew from a sports-loving kid, through bleak days of hopelessness, into self-acceptance of his physical limitations as he learned what was possible for him to accomplish. His years at UCB were great ones as he both enjoyed his college status and got in touch with his leadership qualities. He took great pleasure in watching people with disabilities achieve greater acceptance.”
Among his accomplishments as a disabilities rights actives, Roberts created the Physically Disabled Students Program at his University. California Governor Jerry Brown named him Director of the California Department of Vocational Rehabilitation in 1976. Seven years later, Roberts co-founded the World Institute on Disability – a nonprofit focused on disability rights policies, research and consulting.
Marking what would have been Roberts’ 78th birthday, the doodle leads to a search for “Ed Roberts activist” and is being displayed on Google’s U.S. homepage.
Posted by BA Haller at 10:05 PM
Sunday, January 22, 2017
Disabled veteran, Illinois Sen. Tammy Duckworth delivers impassioned speech at Women's March on Washington
From NBC Chicago:
Illinois Sen. Tammy Duckworth delivered a passionate speech at the Women’s March on Washington, telling the massive crowd that she “didn’t shed blood… to have the Constitution trampled on.”
A combat Army veteran, Duckworth lost both legs co-piloting a helicopter in Iraq in 2004. She handily defeated former Sen. Mark Kirk, a Republican, in the 2016 election to reclaim former President Barack Obama’s Senate seat for the Democrats.
“This is about our country,” Duckworth said Saturday, “I didn’t shed blood to defend this nation – I didn’t give up literally parts of my body — to have the Constitution trampled on.”
“I did not serve, along with the men and women in our armed forces,” she continued, “to have them roll back our rights.”
Duckworth, who said she brought her 2-year-old daughter to the march, made specific mention of the Americans with Disabilities Act because “without the ADA, I would not be here today.”
She also encouraged the crowd of approximately 500,000 people to stay involved and active in the political process.
“This is what it’s about – it’s about you going home after today and standing up and fighting in your communities,” she said. “Don’t take what you do today and don’t let it end. Take it home, run for office yourselves. Get out there,” she added.
The rally in Washington was the largest of more than 600 "sister marches" planned around the world - including the Women's March on Chicago that drew an estimated 250,000 people.
Posted by BA Haller at 10:18 PM
Tuesday, January 10, 2017
As she accepted her Cecil B. DeMille award on Jan. 8 at the Golden Globes, acclaimed actor Meryl Streep sharply criticized President-elect Donald Trump for ridiculing a journalist’s disability. “The person asking to sit in the most respected seat in our country imitated a disabled reporter — someone he outranked in privilege, power, and the capacity to fight back,” she said. “It kind of broke my heart when I saw it, and I still can’t get it out of my head.” Streep was referencing a moment in November 2015 when Trump mocked Serge F. Kovaleski, a New York Times reporter with arthrogryposis.
Streep denounced Trump’s incivility toward Kovaleski: “Disrespect invites disrespect. Violence incites violence. And when the powerful use their position to bully others, we all lose.”
In response to Streep’s speech, Oscar-winning actor Marlee Matlin tweeted, “SPEAK THE TRUTH!”
Comedian, writer, and disability rights advocate Maysoon Zayid (pictured) responded similarly to Streep’s speech. “She won’t get the Cecil B. DeMille Award again — it’s once in a lifetime, and she chose to use that platform to condemn something that was so painful to so many of us,” she told BuzzFeed News on the phone.
The speech, however, was a reminder that Hollywood itself has a long way to go in destigmatizing disability. “Last night, the only mention of disability was Meryl Streep reminding the world that Donald Trump mocked us and became president,” Zayid said.
According to the US Census Bureau, people with disabilities make up nearly 20% of the population, and yet — as Zayid said — they were not represented at the Golden Globes. A recent study by the Ruderman Family Foundation confirmed that those with disabilities are grossly underrepresented in television — and when they do appear, they are almost always played by actors who do not have a disability themselves.
Danny Woodburn, an actor who is on the Screen Actors Guild’s Performers With Disabilities Committee, wrote in an email to BuzzFeed News: “To progress as a people, we need to embrace those who have been excluded.”
Matlin, speaking with BuzzFeed News via a Twitter direct message, said that Hollywood needs to “make disability and actors with disabilities part of the diversity conversation, which includes hiring actual people with disabilities to play disabled roles.”
As Woodburn put it, “My industry, [which] has always been the standard-bearer for addressing injustice … needs to continue on the path that has really only just begun for the disabled.”
Zayid offered concrete steps. She said Hollywood needs to “make sure that studios and auditions are ADA-compliant so that the disabled community — the largest minority in America — can actually have representation on television. Right now, we’re barely there.”
Streep’s speech has come under fire from conservatives, for illustrating a “liberal bubble.” Countering this charge, Matlin said that increased inclusivity on TV shows and movies can work to puncture a bubble that mostly excludes people with disabilities. “When you create a role for a character with disability, you get a potentially richer, more interesting story that accurately reflects the varied fabric of America,” Matlin wrote.
Posted by BA Haller at 10:38 PM