Saturday, February 18, 2017

Medicaid reform advocate, writer, blogger, artist, disability rights activist Nick Dupree dies


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:

Nick’s Crusade

Superdude Comics

Wynn Newhouse Awards

VENTure eVent

Bunnies in Space comic

Unconventional Aid

Wikipedia page about Nick Dupree

Nick's YouTube channel
https://www.youtube.com/channel/UCOaGemDNp79DVtWHJomhekQ 

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.

Nick’s Crusade 
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.”

Monday, January 23, 2017

Ed Roberts activist Google Doodle honors leader of the disability rights movement


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.

Sunday, January 22, 2017

Disabled veteran, Illinois Sen. Tammy Duckworth delivers impassioned speech at Women's March on Washington


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. 

Tuesday, January 10, 2017

Disability activists in Hollywood on Meryl Streep’s Golden Globes speech

From Buzzfeed:

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.

Monday, December 19, 2016

Lights! Camera! Access! 2.0 works to move young disabled people toward media careers


By B.A. Haller
©Media dis&dat
Transparency statement: I participated as a mentor for all three Lights! Camera! Access! 2.0 events.

All photos by B.A. Haller. The photo at right is from the November 14 White House event with Maria Town, left, senior associate director in the White House Office of Public Engagement, and Towson University mass communication student, Ben Pearce. 

In three summits during fall 2016, Lights! Camera! Access! 2.0 (LCA 2.0) provided mentoring and networking for young disabled people interested in media careers.

Tari Hartman Squire, CEO, EIN SOF Communications and the Loreen Arbus Foundation, in collaboration with City University of New York (CUNY LEADS & CUNY Coalition of Students with Disabilities), Deaf Film Camp, DisBeat, Gallaudet University, National Disability Mentoring Coalition, PolicyWorks, SIGNmation and NY Womenin Film & Television, hosted events at CUNY’s John Jay College of Criminal Justice (October 31), the White House (Nov. 14), and Gallaudet University in D.C. (Dec. 12).

“Loreen and I are proud of Team LCA 2.0 collaborative Phase I accomplishments, including two Think Tanks that coincided with ADA25, adoption by the Clinton Foundation as a ‘Commitment to Action,’ co-branded CBS News/LCA 2.0 Internship, three Resume Review, Speed Interviewing and Flash Mentoring Summits, and expanded partners," Squire said.

“We look forward to launching Phase II with adding Summits in Hollywood, Informational Webinars, expanded Internships, deeper focus on the Disability Narrative Imperative, collaborations with Industry Associations and Unions, and building the groundwork for our LCA2.0 Mentoring Data Tracking System. We welcome new partners and collaborators who want to support the next generation of media professionals with disabilities,” Squire explained. 


Becky Curran (pictured left), coordinator of EEO and diversity at SAG-AFTRA and who participated as a mentor at the Oct. 31 LCA 2.0, explained how important these events are for young disabled people: "LCA 2.0 is a wonderful opportunity for college students, who happen to have disabilities, to find mentors in people like them, who are in professions that they want to seek out for the near future."

The summits drew high school students, college students and recent graduates with disabilities who participated in resume reviews, flash mentoring, networking discussions and heard from speakers and panelists with disabilities about how they got into media work.

Rutgers University journalism/media studies/theatre 2013 graduate Melanie Waldman said the events she attended gave her a new perspective on the vibrant and diverse community of people with disabilities: “Before attending the summit, I don't think I truly realized just how broadly the disability community extended. Between mentors, mentees and the event organizers, whether able-bodied or not, every single person in attendance was working towards the same goal.

“I think that it's incredibly empowering to know that my community is not just around to be present as a support system, but that they are truly working at their utmost capacities to further our future careers into the world of entertainment and media. It's given me the motivation to take a look at my own work and realize the true power I have within myself to help change the ‘disabled narrative’ as a millennial post-grad with disabilities,” she explained. 

Waldman blogs about her experiences as an amputee at Where’sWaldman.

Ben Pearce, a public relations student at Towson University who graduated in December 2016, attended the Nov. 14 LCA 2.0 at the White House. He said, “more than anything, this event opened my eyes to the lack of media representation of those with disabilities. I'd gotten so used to it, I never even thought about it. It's refreshing to see efforts being made to change that trend. What I took away from it is that I want to be a voice for the disabled community in the media, to show what we're capable of and hopefully because of it, one day my disability won't be much of a factor anymore.”

LCA 2.0 Partners also invited select high school students to measure impact on career exploration of youth with disabilities.  The mother of a high school student with cerebral palsy said, “My teenage daughter attended one of these events a few weeks ago at the White House, and I believe it may have changed her life… What you don’t know is that she has had a challenging time in middle school, feeling increasingly isolated and stigmatized by her ‘typical’ classmates. You offered her a radically different narrative for her life—and gave her a stronger sense of her own future than she otherwise would have had at her age. After the networking session ended she immediately marched over to Maysoon (Zayid), asked her to exchange business cards, and said ‘I hope we can work together someday.’ That is not something she would have done before.”

Lights! Camera! Access! began seven years ago as a “Call-to-Action” Summit produced by EIN SOF for the Office of Disability Employment Policy (ODEP) and the Television Academy’s Diversity Committee. Current LCA 2.0 events were in response to the growing awareness that to make positive change in the representation of people with disabilities in the media, disabled people need to work in the media. LCA 2.0 reports its objectives as: “1) Increase disability employment in-front-of and behind-the-camera/keyboard; 2) Improve authentic disability-inclusive diversity portrayals in television, film, advertising, and digital platforms; 3) Expand accessible media with captions/audio descriptions to those who are Deaf, blind, or have other disabilities.”

LCA 2.0 summits are also a response to the July 2016 Ruderman Family Foundation WhitePaper about lack of TV representation of disabled people: “Although people with disabilities make up nearly 20% of our population, they are still significantly under-represented on television. What compounds the problem is the fact that even when characters with disabilities are featured on the small screen, they are far too often played by actors without disabilities.” 

At the November 14 White House summit, Scott Silveri, creator of the ABC network comedy “Speechless” that features a main character with a disability played by a disabled actor, spoke about his focus on authentic casting. The show is based on Silveri’s family; he has an older brother with cerebral palsy.

In picture right, the creator/producer of the ABC comedy "Speechless" Scott Silveri speaks to attendees via a telepresence robot named ALF (Accessible Life Form) that resides at the USDA TARGET Center.  


“Because there is so little representation of people with disabilities on television, we cast a net far” to audition a disabled actor, he said. He saw quickly that Micah Fowler, who plays the disabled character JJ, would be the best actor for the role because “he brought warmth and humor to the role, without the benefit of lines.” (The JJ character on Speechless is a wheelchair user with cerebral palsy, like Fowler, but is nonverbal, unlike Fowler.)

“It was important me that we cast someone with a disability because first of all. Just for the reality of the show, we didn’t want to be faking it,” Silveri said. “And to do a show about inclusion and to get it wrong so fast... I didn’t want to mess it up in the most obvious way. Because the show has found a home on the network, I am hoping that experience will be replicated, because people are seeing that these stories are stories that can find an audience.”

Maria Town, senior associate director in the White House Office of Public Engagement, helped organize the White House summits. Her work focuses on connecting the White House, the federal government, and the disability community.   

At the White House summit at Gallaudet University on Dec. 12, Town questioned “Breaking Bad” actor RJ Mitte about what he wants the future of disability media to look like. Mitte has cerebral palsy.

“I look forward to seeing more people with disabilities on television. There is such a small percentage of characters that actually have disabilities on current television. We need people to see people with disabilities and bring the normality of it,” he said.

Mitte added that he thinks through events like Lights! Camera! Access! 2.0, the media will make a positive turn in disability representation.

“I hope to see more realism, more honesty, and more truth in our television because that’s what people are hungry for,” Mitte explained. 


Mentor Emily Ladau (pictured left), communications consultant and writer at Words I Wheel By and Editor in Chief of Rooted in Rights, said she wanted to give back: "I attribute much of my early career success to mentors who provided guidance and support, so when I was offered the opportunity to serve as a mentor for LCA 2.0, I knew what an honor it would be to pay it forward to the next generation of media-makers in the disability community."


Anna Pakman, director of Digital Strategy, Empire StateDevelopment in New York, moderated panels at all three events on the topic of media careers. Speakers on the Dec. 12 panel Pakman moderated were:  Scott Lewers, senior vice president, TLC Productions; Tyrone Giordano, community engagement strategist, Communication Service for the Deaf; and Roger Purcell, director of Customer and Competitive Intelligence, Conde Nast.


Pakman said: "Whether it’s the boardroom or the writer’s room, if you don’t have a seat at the table, you don’t exist. It’s important to build a talent pipeline, not only so that this generation has more of an opportunity in the industry, but also so that our stories get told for years to come."

In the picture right, Pakman, right, does a resume review with a Deaf student filmmaker from Rochester, N.Y.


At the Oct. 31 LCA 2.0, Vanderbilt University’s Next Steps Ambassador Program and Eye to Eye were inducted into the Susan M. Daniels Disability Mentoring Hall ofFame.


Thursday, December 15, 2016

Assisted Suicide: a British musical that asks us to think critically about the portrayal of euthanasia


In November, Colorado voters approved a ballot that made it the fifth state to legalise physician-assisted suicide (excluding Montana, which allows it via court ruling). Discussions around this issue are understandably fraught. 
At a time when legalisation is becoming more common, it’s now even more important that we consider how the debate around assisted dying is framed. Not only the news – but also documentaries and fictional entertainment such as novels and films contribute towards the public understanding of euthanasia. And in the main, such fictional depictions and documentaries are largely in support of assisted suicide. Unless handled carefully, such media could work to stifle the debate. 
A musical attempting to highlight this dynamic was staged this weekend at Liverpool’s Unity Theatre as part of DaDa Fest – an arts festival which delivers events based around disability. Assisted Suicide: The Musical is described by its creator, Liz Carr, as “a TED talk with show tunes”. 
Carr is a well-known disability activist, comedian and actress, who has spent a lot of time campaigning against the legalisation of assisted dying. The musical finds Carr, alongside a small cast of actors, singing a collection of catchy tunes which draw attention to various issues surrounding the debate, including the contested notion of choice and the various social barriers faced by those living with disabilities. 
The musical is refreshing for many reasons – not least because it addresses the bias of creative work exploring this contentious issue. As Carr points out, it’s very rare to see people with disabilities being shown to lead happy and fulfilling lives. It’s the stories in which individuals request to end their life that receive most attention. 
Setting agendas
A film released this year called Me Before You played a large role in highlighting this bias. Carr and other campaigners from the group Not Dead Yet protested against what they saw as the film’s romanticisation of euthanasia at its premiere in June of this year. 
Based on a 2012 novel by Jojo Moyes, Me Before You tells the story of Will, a young man who is left quadriplegic after being hit by a motorcycle. On realising that his paralysis is permanent, Will requests to travel to Switzerland where he can be helped to end his life. Much of the novel is concerned with the romance that develops between Will and his carer, Louisa. Despite their feelings for one another, Will maintains that he will not change his mind about ending his life. Louisa struggles to understand how their relationship is not enough for him to want to live. 
Criticism of Me Before You was certainly justified – the film doesn’t do enough to criticise the social barriers Will faces nor does it delve into the mental health side of things. And yet there are individuals living with disabilities who are not wholly disappointed with the way in which the film raised the issue of assisted suicide. The dialogue which emerged in response to Me Before You raised questions over the way entertainment explores these issues and its role as a means of engaging the public with the ethical debates around euthanasia. 
Documentaries also have an important role in setting the agenda of these debates. Assisted Suicide: The Musical pokes fun at these, too. Carr believes such documentaries are intended to pull at audiences’ heartstrings by showing disabled people as pitiable – and euthanasia as a suitably compassionate response. No specific examples are mentioned but documentaries such as the BBC’s How to Die and Terry Pratchett’s Choosing to Die undoubtedly fit the bill here. 
Once again, the issue is representation. It’s not so much that these portrayals are maliciously insincere, only that so few documentaries consider how disabled individuals should be assisted to live, not simply to die. 
Better alternatives?
There do exist books and films which are, at least to my mind, more adept at handling the topic of euthanasia and disability. 
You’re Not You is both a novel and a film which centres on the life of Kate, a classical pianist who is diagnosed with ALS. Kate employs a carer – Bec, a college student desperate for money, who applies for the job despite a lack of experience. The narrative ends with Kate being taken off life support. Or there’s the 2011 French film The Intouchables, loosely based on a true story in which a wealthy aristocrat hires a young man from the projects to be his caregiver. The film ends with Philippe marrying the love of his life. 
The difference with these narratives is their capacity to reflect nuance – to show the characters as indecisive, to show the realities of their condition while also showing them enjoying life. The key point here is uncertainty. Disability rights groups who reject physician-assisted suicide focus on the idea that it’s understandable to want to end one’s life but also that this is never permanent, just a phase. 
Whether you agree with this perspective or not, the high book sales of Me Before You and Carr’s sold-out musical demonstrate that the arts are a prominent platform for engaging people with social and bio-ethical issues. They may not always be successful in terms of appropriate representation, but they still promote reflection on how they participate in and frame these discussions.
And such reflection is to be promoted. It encourages future books, plays, films and documentaries to acknowledge the complexity of this issue and avoid attempting to provide a blueprint that must be followed in order to achieve clearly defined positive or moral outcomes.

Friday, December 9, 2016

Micah Fowler on Booking His Speechless Role and Playing a Character With More Severe Cerebral Palsy Than Himself


Speechless brought a new household to ABC’s block of family sitcoms: the DiMeos, led by Minnie Driver as a fired-up, helicoptering mother named Maya to a special-needs child named J.J. Eighteen-year-old high-school senior Micah Fowler plays J.J., who like his character has cerebral palsy, but has a different disability level. Where J.J. is non-verbal, communicating with the use of a laser pointer and a chart of commonly used words and an alphabet, Fowler can speak given some time. I had a conversation with J.J. around the premiere of Speechless, which was picked up for a full season just a few episodes into their season. Since a conventional phone interview wouldn’t be logistically possible, we decided to email over the course of several weeks through his mother, Tammy Fowler, who wrote down his responses. Vulture talked with Fowler about juggling school with acting, the representation of disabled actors on screen, and how he found out he got the part on his 18th birthday. 

First off, I'd just love for you to tell me about yourself. What do you like to do?
I'm 18, a high-school senior, and grew up in Barnegat, New Jersey. I have cerebral palsy and use both a walker and a wheelchair. I use the wheelchair for longer distances. Unlike J.J. in Speechless, I do communicate verbally but have to work very hard at it. I am an avid movie fan and especially enjoy the Marvel and DC franchises. Oh, and I am a resident expert in all things Star Wars. I love playing video games, acting, and playing sled hockey. I also collect vintage cell phones. 
Who's your favorite superhero? My favorite superhero is Batman. I think he is my favorite because he was the first hero I was fascinated with as a child. 
How did you get cast in Speechless? What was the audition process like?I credit my love of acting to my sister Kelsey who is a veteran Broadway actress and currently a junior at Pace University in New York. We are very close, and I developed an interest in acting when I was younger through watching her many shows. My sister’s agent asked if I was interested in acting, and I eagerly jumped on board. I made my television debut on an episode of Blue's Clues when I was 9, and later appeared on several episodes of Sesame Street. When I was 15, I played the role of Barry in Jason Reitman’s movie Labor Day, with Kate Winslet and Josh Brolin. 
To answer your question of how I was cast in Speechless, I have to go back a year and a half when my agent was asked to have me send in a "personality tape" for an "untitled Scott Silveri project." I put together a tape of me just talking about myself and joking around. Time went by, and I never heard anything else. A year later, my agent called and said they had requested another personality tape for the same project, now titled Speechless. So I again put together a personality tape just talking about my interests and joking around. A few days later the agent said the casting director was sending six scenes over. I spent an entire Saturday putting together the tape of the six scenes. My parents verbalized all of the other characters lines (off-camera) while I reacted to all of the dialogue on-camera. My sister was at school, so my mom sent her the audition footage to upload to the agent. She texted my mom, "This is hilarious, he is totally going to book this." How crazy is that? She called it. The agent told us they loved the tape and would be in touch. About two months later, I found out I booked the role on the day of my 18th birthday, BEST BIRTHDAY PRESENT EVER! 
What a birthday! That’s incredible. What’s it like working on a television show for the first time? I know that the hours must be long because you have to shoot so many episodes.I love working on Speechless. It has been a blast and I am enjoying every minute of it. We do work really long hours, 10–14 hour days, five days a week, but we get a one-week hiatus off a month. I was not used to working full time, but to tell you the truth, it never feels like work to me, even on the really long days. I guess that's because I am doing something that I love. 
Everybody on-set is so invested in this show and loves that it is impacting so many people, so it is a great working environment. So everybody including the actors, the writing staff, the directors, the producers, and even the crew get along great, appreciate each other and are grateful to be part of such a great project. We laugh a lot while filming and in-between scenes we chat, share stories, and Kyla does magic tricks. 
What does your schedule look like on a day-to-day basis?My schedule greatly varies from day to day. I am usually at the Fox Lot or on location filming, and I have tutoring 10–12. [During our] one-week hiatus every month, we usually fly back to New Jersey. As far as my daily schedule, one day I might be in every scene and only able to tutor during lighting setups and in between takes; another day I might have a scene off and go to tutoring intermittently throughout the day. I get 15 hours of private tutoring in a week. Once in a while, I do get a day off during the week because I am not in any of the scenes scheduled to film that day. When I come home at night, I read through and prep for my scenes for the next day, watch a television show, and go to bed. 
There’s an episode where Minnie Driver's character, Maya DiMeo, gets the principal to cancel a bonfire party. It was a great way to think about accessibility and how the majority should handle minority concerns. What would you have wanted in that situation?If I was in that situation, I definitely would not have wanted the event canceled. I would have wanted a solution for me to get to the beach, a zip-line to the beach or an all-terrain beach wheelchair. 
The writing seems "lived in" to me. Would you agree with that? Do you have input with the writers regarding J.J.'s plotlines or character development?Yes, I agree. Many of the writers have someone in their lives that they are close to who is dealing with a disability so they are able to draw from those personal experiences. The show also consults with The Cerebral Palsy Foundation regularly. 
Yes, my parents and I have shared many of our personal experiences with the writers as well; some have already been used in episodes we have shot. I have also given input during filming certain scenes, input concerning J.J.’s disability level and the equipment he uses. 
What are some of your personal experiences that have been incorporated into the show? What was some of the input that you gave regarding J.J.'s disability level?There have been several of my personal experiences incorporated into the show. One is: My mom had a “Micah Manual” for when my grandparents watched me for extended amounts of time growing up. In one episode, Mia hands a book to Kenneth and he says, “This kid comes with instructions?” Another is: I like to watch The Bachelor, and it was incorporated into one of the episodes of J.J. watching The Bachelor
As far as J.J.'s disability level, J.J. was written as having a more severe form of cerebral palsy than I do. So there are times, especially in the beginning when we had to work out J.J.’s abilities and struggles. My parents and I would think about the abilities and struggles of others we know with more severe cerebral palsy and say, "J.J. would probably not be able to do this or would adapt and do it this way." An example is: I can brush my own teeth and pick up a knife and fork and feed myself. J.J., not having much dexterity in his hands, has difficulty with these tasks. 
It's rare to see a disabled actor on TV: A recent study showed that less than 2 percent of actors onscreen were themselves actually disabled, despite the fact that people with disabilities make up nearly 20 percent of the U.S. population. There have been a few notable exceptions like RJ Mitte in Breaking Badand Daryl Mitchell, who is currently on NCIS: New Orleans. What do you think of the state of representation of disabled people on TV and film?I have not seen NCIS: New Orleans, but I have seen Breaking Bad and I think RJ Mitte is great! 
I think it is sad that less than 2 percent of actors on screen are themselves actually disabled. Growing up a huge television and movie fan, I couldn’t help but notice the lack of representation of both disabled actors and disabled characters being portrayed on television. So I am so very excited that Speechless, a prime-time network-television show, conquers both of those missing links by having both an actor actually living with cerebral palsy as a main character and by having a “character” in the story line living with a disability. 
I think there is a lack of auditioning opportunities and a lack of hiring of disabled actors due to misconceptions and generalizations of people with disabilities, a lack of breakdowns for roles of characters with disabilities, and a lack of handicap-accessible auditioning rooms. 
Look at the last ten years of television — regular exposure on a regular basis causes viewers to change their perspectives and become comfortable with diversity in families. As they get to know J.J., it will bring understanding and relatability towards those with disabilities. This really is a groundbreaking experience, a person with a disability hired as an actor portraying a main character with cerebral palsy on prime-time television! I think Speechless will make people more comfortable around people with disabilities. I think Speechless will encourage viewers to look beyond the physical or other limitations of special-needs people who come into their own lives and discover their love, personality, and even their humor! 
What has your favorite episode of Speechless been so far?My favorite episode so far — wow, that is hard! I would have to say the Halloween episode is definitely my favorite that has aired so far. I loved all the amazing costumes our incredible crew created and had a blast trying out the R2D2 costume, and the Back to the Future's DeLorean. I had a blast driving the DeLorean, crashing the DeLorean, and playing drunk! It was fun to watch, too. I love that episode!