Thursday, June 15, 2017

Gregg Mozgala, Katy Sullivan unpack the fear, anxiety, and power of disability onstage in Manhattan Theatre Club’s Cost of Living

From Playbill:

Who: Gregg Mozgala & Katy Sullivan
The Theatre: New York City Center – Stage I 
Martyna Majok’s Cost of Living, is a play about love, class, intimacy, and loneliness. It dips in and out of these themes in a way that is moving and unexpected. It isn’t necessarily a play about disability, it just so happens that two of the four characters are physically disabled—as are the actors who play them: Gregg Mozgala, who has cerebral palsy (CP), and Katy Sullivan, who was born a bilateral above-knee amputee. The two actors open up about their experience of working on the play, and what it means to be a disabled performer in the entertainment industry. 
What is your experience of being a disabled performer—is it challenging to get work? KS: I feel like it’s a bit of a double-edged sword. In this industry, you hope to have something that makes you stand out from the other performers, so, [disability] can be a really cool thing to incorporate into a show. That being said, disability can be a scary thing to the world in general because we’re not represented in the entertainment industry, considering how large the community is—it’s the largest minority in the country, [and yet] less than 1 percent of characters on television are disabled. I didn’t grow up seeing myself anywhere. The first time that I saw a woman that looked like me on TV was me. My hope is that when people start to see themselves reflected in art and in work, younger people will have something to point to and think: ‘I can do this.’ I feel like we’re at a tipping point with this—people are trying to be more inclusive. It’s about figuring out how to do it in a way that’s powerful. 
Cost of Living certainly has some powerful moments. Gregg, in one scene, you are completely naked and being showered. How do you feel about that?GM: I think that is one of the most beautiful moments in the play. To see a disabled body nude onstage, and in that vulnerable, intimate scenario—that’s a theatrical dream of mine. To have audiences see that, I think is really powerful. 
Do you feel like disability can be used onstage or onscreen in a misguided way? KS: I feel like when people are incorporating disability into a project, it’s either about it being inspiring or sad. [The disabled person] is not ever just a human being with needs and wants. I feel like Cost of Living does a really good job of just presenting people living their lives, rather than disability being this elevated thing or a big tragic event.
GM: I feel like to put a disabled person onstage in 2017 is a radical experimental act. The standard practice is to cast non-disabled actors as disabled, and that’s what people are used to. 
Why do you think we haven’t set a practice of casting disabled performers in disabled roles? GM: Katy touched on disability being a “scary thing”—there is a lot of fear and anxiety built into being disabled and how people perceive it. The context to disability is trauma, loss, and pain—really, scary things, and the fear is real. Also, from a pure acting perspective, actors like working through constraints [such as that].
KS: There’s a layer of challenge [for the actor] but also, there hasn’t been a breadth of opportunity for performers with disabilities. A lot of that is because a show hinges on whether it’ll draw an audience so you put an A-list actor in a wheelchair and [voila]. But performers with disabilities will never get to that level unless we’re given opportunities to play the roles that make the most sense for us to play. 
Gregg, I know that you worked with playwright Martyna Majok in helping write some of the lines in the play. Can you tell me about that? GM: Before we took the play to the Williamstown Theatre Festival, we did a workshop of the play and added a scene with a lot of description about what cerebral palsy is and how it feels in the body. She asked me about [how CP feels] and we figured that scene out together. What’s cool is that people with CP have come to see the show and [can relate to what the character is saying]. That’s amazing to me. Not only is it great to embody a character that has the same disability as me, but also, as an actor, I’ve never seen myself reflected back onstage. So to have people in my community see a character that is like them and articulate that experience, is really powerful. 
Lastly, there’s a line in the play that makes fun of the term “differently abled.” Should non-disabled people stop saying it? GM: No one really knows but, in my experience, people within the disabled community prefer “disabled.”
KS: I’m just thrilled to have the conversation. Let’s not be scared. I’d rather someone just ask me. 
Cost of Living is playing through July 16. Tickets are available by calling CityTix at (212) 581-1212, online by visiting, or by visiting the New York City Center box office, located at at 131 West 55th Street, New York.

Wednesday, May 10, 2017

In Australia, TV show deals directly with disability stereotypes

From the Attitude FoundationImage: Dr George Taleporos and Dani Di Toro from the Wheelchair Users episode of You Can’t Ask That(ABC TV).

The best way to shatter a disability stereotype is to let the people with disabilities do it for you. The ABC television series You Can’t Ask That provides a forum for doing just that. 
The format of the program is very simple. It is people fronting the camera with no backdrop, studio sets or other scenery to distract you. They read out questions sent in anonymously by the general public and provide their answers, in their own words. 
Six things that we love about the show:
1. It’s not just about disability, although people with disabilities are well represented. That shows that stereotypes and lack of understanding extends to a range of people.
2. The questions are honest, not politically correct and get an honest answer, sometimes showing that there is often no straight-forward answer about some issues – like should short statured people use their small height as a means to earn money?
3. The program is long enough to allow a range of range of questions and answers to give a full picture of a person’s life experience. That takes it beyond mere curiosity to seeing a well-rounded person with the same aspirations, frustrations and needs as everybody else.
4. By focussing on a different area of disability in each episode (e.g. blindness, wheelchair users, short statured people, facial difference, Down syndrome) it shows the massive range of disability within a “category” and how different the experience of each person is. This helps to show that people with disabilities are not just a “condition”.
5. The people with disabilities are identified at the end, along with which state or territory they live in. This reinforces that they are real people, living real lives.
6. It helps to educate the general public about what is okay to ask and acceptable ways to deal with different types of disability. Always it’s about treating the person as a person, not a disability – just like how you want to be treated. 
You Can’t Ask That screens on ABC1 on Wednesdays at 9pm.

Monday, May 8, 2017

Experts estimate 7,000 bodies of former 'Insane Asylum" patients from late 1800s buried on University of Mississippi Medical Center campus

From USA Today

JACKSON, Miss. — Experts estimate up to 7,000 bodies are buried on the University of Mississippi Medical Center campus. 
They are former patients of the state’s first mental institution, called the Insane Asylum, built in 1855, and underground radar shows their coffins stretch across 20 acres of the campus, where officials have wanted to build. 
But those officials have faced a steep cost — $3,000 to exhume and rebury each body, as much as $21 million total. 
Now UMMC is studying the cheaper alternative of handling those exhumations in-house, at a cost of $400,000 a year for at least eight years. It also would create a memorial that would preserve the remains with a visitors center and a lab that could be used to study the remains as well as the remnants of clothing and coffins. 
Ralph Didlake, who oversees UMMC’s Center for Bioethics and Medical Humanities, believes the lab would be the first of its kind in the nation — giving researchers insight into life in the asylum in the 1800s and early 1900s. 
The Mississippi Lunatic Asylum included a main building and several wings. 
“It would be a unique resource for Mississippi,” said Molly Zuckerman, associate professor in Mississippi State’s department of anthropology and Middle Eastern cultures. “It would make Mississippi a national center on historical records relating to health in the pre-modern period, particularly those being institutionalized.”
Didlake, Zuckerman and others have formed the Asylum Hill Research Consortium, made up of anthropologists, archaeologists, historians and even an expert in dating the wood of the coffins. 
It was the consortium that developed the memorial/visitors center/lab plans. 
“We have inherited these patients,” Didlake said. “We want to show them care and respectful management.” 
Asylum's historyMississippi’s first mental institution became a reality when reformer Dorothea Dix rallied support among state lawmakers to fund construction of the $175,000 asylum, completed in 1855. 
Before the asylum, those suffering from mental illness were chained in jails and even attics, said Luke Lampton, chairman of the state board of health. 
While the asylum provided a better place for patients, life remained harsh. Of the 1,376 patients admitted between 1855 and 1877, more than one in five died. 
After the Civil War, the facility expanded to house 300 patients, and the area became known as “Asylum Hill,” a neighborhood that included houses, a school and Cade Chapel Missionary Baptist Church, a church for former slaves. 
At its height, about 6,000 patients stayed at the asylum, and the facility provided many jobs to the area. 
In 1935, Mississippi moved the asylum to the present location of the State Hospital at Whitfield. 
Two decades later, construction began on the same hill for UMMC.
In 2013, UMMC officials discovered 66 coffins while constructing a road on the 164-acre campus. 
When the university began work in 2014 on a parking garage east of the dental school, underground radar revealed 1,000 coffins. More radar work revealed more coffins. 
Didlake said current estimates put the number as high as 7,000.
The consortium is hoping grants can make it possible for other researchers to join the study, he said. 
Personal connection
Karen Clark of Clinton says her great-great-great grandfather, Isham Earnest, is believed to have died at the Mississippi's mental institution between 1857 and 1859.

Karen Clark of Clinton would like to see a grant given to collect DNA from all the patients. “It would make these people identifiable if family members came forth,” she said. 
She is willing to donate her own DNA to see if it matches her great-great-great grandfather Isham Earnest. The War of 1812 veteran moved to Neshoba County in 1842, was ruled “insane” in the 1850s and is believed to have died at the asylum between 1857 and 1859. 
“Hundreds, if not thousands, of descendants are here today because of Isham Earnest,” she said. “Many are teachers, nurses, educators and ministers.” 
When she recently went through old asylum records and read about patients there, she felt overcome with emotion, she said. “I thought, ‘This person could be saved if modern medicine were there.’ ” 
Her sympathy runs high for those in the asylum “because I’ve had mental issues in the distant past,” she said. “No one took me and dumped me.”

Tuesday, March 28, 2017

Australian non-profit plans new documentary TV series that will focus on people with disabilities

Frustrated by representation of disability in the media, particularly in television, the Attitude Foundation, founded by former disability discrimination commissioner Graeme Innes, is seeking to change the story. 
A 13-episode documentary series will feature “interesting people who happen to have a disability” telling their story. 
Alex Varley, the foundation’s CEO, told Pro Bono News the portrayal of disability in television didn’t reflect real life. 
“When we were looking at where are the issues, the problems around the portrayal of people with disability, we recognised that the big area is the way that people with disability are portrayed in the media,” Varley said. 
“You’ve really got two dimensions for that. One is that you don’t necessarily see many people with a disability actually in the media, particularly… television programs where you have normal drama. 
“There’s some Screen Australia studies which have shown that around 4 per cent of characters in Australian drama are people with disability, whereas of course the general population is around 18 to 20 per cent. 
“And then when you actually see people with disability in things like television programs, there’s a lot of stereotypes.” 
One of the stereotypes, according to Varley, is the idea that disability needs to be cured. 
“Particularly when you’re watching things like the news where a very typical scenario is the scientist or the doctor who has discovered some miracle cure for a poor disabled child who is helpless and pitiful, and really focusing all the time on those extreme stories and extreme portrayals of disability,” he said. 
“Whereas in fact we know… most people with disabilities are not helpless.“They’re just ordinary people getting on with their lives and sometimes their disability and the way that society deals with it may impact on their lives, but it doesn’t define them necessarily.” 
The Attitude Foundation said other common stereotypes included “disabled villains”, with disability framed as the as the basis of resentment or “objects of total inspiration”, where a person is shown to “overcome” their disability. 
Varley said accurate representations of other minority groups have been proven to change societal attitudes. 
“Television still has a major impact,” he said. 
“There’s a few research studies that have been done over the years and in fact one of the more famous ones was the ‘Will and Grace effect’, after that American TV show, which was actually about attitudes towards gay people. 
“What that showed… is that it actually helped to change mainstream attitudes towards gay people as just being part of society as your colleagues, your friends and neighbours and everyone else.” 
There are some guidelines that television studios are supposed to follow around the portrayal of people with disability. 
But Varley said, despite these measures chipping away at the issue, it wasn’t enough. 
“We look at it and say: ‘Can we actually change every single television program that appears?’ and of course the obvious answer to that is: ‘Well no you can’t,’” he said. 
He said there were a number of reasons to produce TV series featuring people with disabilities. 
“The reason for us doing it and making a series from it is that you get prolonged exposure,” he said. 
“And what you get to see then is the variety of people with disability, and it’s not all about the stereotypes like every blind person has a guide dog or carries a white cane… or every person with a physical disability is in a wheelchair. 
“It’s about us focusing on something that we think is achievable, that we know will have an impact, and that we can help to control that message and get those proper stories made by people with disabilities.” 
Varley said the series would be in a similar style to Australian Story.“It’s about telling an individual’s story – someone with disability – and it’s not going to be sensationalist,” he said. 
“But obviously the people who will be involved in the programs will have interesting stories in themselves. No one watches boring television and you don’t change attitudes if no one watches it. 
“But what it will do is really give you more nuances and tease out how they live and what happens when their disability impacts on them because of what society does.” 
The Attitude Foundation is fundraising to produce the pilot episode.

Thursday, March 9, 2017

Ruderman Family Foundation challenges TV content creators to audition, cast more actors with disabilities this pilot season

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 widelycovered Ruderman White Paper on the Employment of Actors with Disabilitiesa 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 SpeechlessNCIS: 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  
We look forward to seeing your creative and innovative commitment to inclusion. 
Disability-Inclusive Diversity Resources:
  • Breakdown Services/Actors Access (over 4,000 performers with disabilities):
  • Changing the Face of Beauty:
  • Disability Film Challenge (open to aspiring filmmakers with disabilities):
  • DisBeat (authentic disability sources for journalists):
  • GLAAD Where Are We On TV: Annual Diversity Report:
  • Inclusion in the Arts (performers with disabilities and portrayals):
  • LCA 2.0 Clinton Global Initiative (Commitment to Action):
  • LCA 2.0/EIN SOF Communications (employment-in front of and behind the camera/portrayals):
  • Media Access Awards:
  • Meet the Biz:
  • SAG-AFTRA Diversity Committees (including PwD):
  • Writers Guild of America West – Diversity:

Wednesday, March 8, 2017

In honor of International Women's Day, a Helen Keller essay on women and peace

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. 

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 

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.”