Me Before This Blog, Part 1

(Note: This blog entry contains spoilers from the film Me Before You.)

If you go to the movies, spend time on social media, or have friends with disabilities, you have probably heard the outcry over the film Me Before You, the new teary-eyed romance from director Thea Sharrock based on Jojo Moyes’ best-selling novel of the same name in which a cheery caregiver (Lou) of modest means falls for a wealthy quadriplegic (Will) who seeks assisted suicide. The controversy surrounding this film along with the swirling of my own emotions, from frustration to anger to anxiety and even depression, have been so intense, in fact, that I have begun to look back fondly on the man I was before I tasked myself with writing this blog!

With so many well-written critiques of the film from writers with and without disabilities, which you can find in this media roundup or by simply doing a Google search for the film, I will not bore you with yet another recap of the film and why it has angered so many people with disabilities worldwide. Rather, I would like to use this two-part blog entry to respond to some of the arguments in defense of this film voiced by the actors, writer, director, and myriad online commenters on the 50+ positive and negative reviews I have read. As in so many debates around sensitive topics, I have noticed that each side repeatedly spouts the same arguments, but there is little interaction between the two positions, beyond outright dismissal or plain disagreement. In the hopes of starting an honest and open discussion about the social impact of the film and how it fits into larger trends of disability representation in film and the extremely complex issue of assisted suicide, I would like to offer my own thoughts as a person living with Muscular Dystrophy.

 A promotional image from Me Before You in which a dressed-up Emilia Clarke
smiles among the film's infamous taglines "Push yourself. Don't settle. Just live"
and "Live Boldly." These taglines have drawn fire from many in the disability community
who argue the implication here is that you cannot live boldly if you are disabled. If the film's
message truly is "live boldly," does it make sense that its main character ultimately ends his life?

I have seen the film and did find certain aspects of the film positive and charming (for more cool-headed reviews of the film, read more here and here), but all together I do agree with many activists that the film’s implied messages about disability, intentional or not, reflect larger ableist trends in our culture that are harmful to actual people with disabilities. As Karolyn Gehrig explained in her recent critique of the film, “When the disability community at large protests the ableism in a film, it is not only the film we protest. We protest the culture which nurtures detrimental ideas about illness, disability, and our lives.” I am also honestly grateful for the film because it has initiated a much-needed, widespread discussion about disability representation in film, united so many people with disabilities via social media and in-person protests, and may even mark a turning point in films about disability.

The film is about the freedom to choose. Yes, it is, and all people should have the right to make their own decisions about their own lives – this is, after all, the whole basis of independence on which the disability rights movement is built – but why does this discourse around choice seem to disappear when nondisabled people seek suicide? People without disabilities, especially when they’re young, are encouraged to seek counseling and other resources when they experience severe symptoms of depression and/or thoughts of suicide. Think also of the It Gets Better Project designed to give hope to young people of the LGBT community dealing with harassment and considering suicide. Why don’t we extend the same messages to people with disabilities? Why do we insist on preventing suicide for so many people, but instead invoke this notion of choice when it comes to people with disabilities? When people with disabilities protest a film showing a disabled character ending his life, it is not the character’s choice they protest; it is this cultural double standard which suggests all lives are worth living unless you have a disability.

Cartoon created by Amy Hasbrouck of Not Dead Yet
 shows a person in a wheelchair looking at a building
 with stairs leading towards "Suicide Prevention Program"
 and a ramp to "Assisted Suicide."

The film simply expresses one opinion. Yes, but one opinion in the absence of others becomes more than one opinion; it becomes truth. Consider these films, which all contain characters with disabilities who either ended their own lives, sought the right to die, or effectively enlisted someone else to assist them in dying: Whose Life Is It Anyway, Gattaca, The Sea Inside, Million Dollar Baby. If that seems like a short list, consider the scores of other films that treat disability as a negative experience, use characters with disabilities to inspire a nondisabled audience, or devolve into melodrama. At the positive end of the spectrum, disabled characters overcome their disabilities and are deemed inspirational; at the most negative, disabled characters seek death. In nearly all, disability is something to be avoided: you can overcome it, you can choose to die because of it, but you can’t live happily with it. There are exceptions to the norm, like Rory O'Shea Was Here, Music Within, The Intouchables, and The Sessions, but they are typically independent films with smaller distribution, not mass appeal, Oscar-winning films that perpetuate stereotypes about disability. Also, despite portraying disability in a more positive light, these films all cast nondisabled actors in the roles of disabled characters, and they paint disability primarily as a privileged white man’s experience rather than the nearly ubiquitous cross-cultural experience that it is. Defenders of Me Before You also explain that no other character in the film agrees with Will’s decision, but I think it’s worth noting that none of these other characters are disabled. In a way, this invalidates their arguments because they cannot truly empathize with Will’s actual experience, and this is in part why I think they ultimately accept his decision. Perhaps if the film included different perspectives from other characters with disabilities, this would have felt more like a single opinion.

Click here for Part 2 of this blog in which I continue to discuss the problematic aspects of the film. In the meantime, if you have any thoughts about what I have discussed above or about the film itself, please share in the comments section below!

Eric Clow
OMOD Project Coordinator
VSA Texas

Sight. Sound. Soul.

Hello friends, Celia here. I am in Boston getting ready for our Inclusion by Design performance at the Americans for the Arts Convention. In Austin, this performance is better known as Sight. Sound. Soul. In 2007, I had the pleasure to join my friend Charlie Washburn of VSA Massachusetts in Idaho to participate as an audio describer in my first fully inclusive concert that featured New Orleans based musician Henry Butler. It was a blast. And I was hooked. Since then, we have done concerts in Boston at the WGBH studios and as part of the annual LEAD conference, in Albuquerque at the Southwest Conference on Disability, and in Austin at the late, great La Zona Rosa and the Palm Door. This performance will be live streamed, a new feature for our merry band of inclusive by design performers, at https://www.youtube.com/user/americansforthearts/

These concerts feature musicians, painters, ASL interpreters, open captioning, and audio description. The audio description is written as the performance is happening and delivered at agreed upon times during the live performance. At some performances, audio description is also delivered via the traditional method, although it is still offered without a preview as there is no opportunity to preview a one-time performance. It is nerve-wracking because as a describer I have to write as I see and I don't have any time to review or edit. What occurs is more spoken word description that gives a sense of the environment of a live performance, which I hope brings the patron who is blind or visually impaired more completely into the experience.

This time, in Boston again, Henry, Nancy, and I will be together after several years, hoping to stir up the magic of the arts for a brand new audience of folks. I am not sure what we will create, but I can assure you that people will be talking about it for days and weeks to come.

Nancy poses beside a colorful mural of Henry Butler.

If I don't see you in Boston, maybe you will bring us to a theater near you to create the magic of inclusive performing arts in your community!

National Convening on the Future of Integrated Dance in the US

Group photo taken at National Convening
on the Future of Integrated Dance in the US

Two weeks ago Olivia and I flew to NYC for the 2016 convening on the future of integrated dance in the US organized by AXIS Dance Company (axisdance.org).  We were excited to meet many people that we had read about, seen their work and listened to their talks about mixed-ability dance.  There were 46 people in attendance including integrated dance company founders like Mary Verdi-Fletcher from Dancing Wheels, Judy Smith from AXIS, Alito Alessi of Joint Forces and DanceAbility International; there were also funders, administrators and teachers as well as disability scholars Carrie Sandahl and Simi Linton; alongside second and third generation dancers from Heidi Latsky Dance and Marked Dance Company.  

The convening came at a great time for us as we are in the midst of planning the next steps for Body Shift. One of the ideas we are most excited about is developing strategies to open our Body Shift community to be more thoroughly included in the larger dance community in Austin.  Our hope is to reach out to local dance artists and studios and offer lecture demonstrations to present about integrated dance that is happening at the international, national, regional, and local level.  We also hope to discuss ways that we can begin working together to create a truly inclusive dance culture. The dream of anybody being able to take part in a dance class and feel good about it is that much closer.  The idea being that when the description of a dance class or workshop says open to all, it really means all.

During our three days at the Gibney Dance Center in Manhattan we also learned about the international model of integrated dance.  The keynote speaker, Jo Verrent, from Unlimited shared the story of the extremely inspiring and inclusive work being done to fund and support individual artists with disabilities in the UK.  Check them out at: http://weareunlimited.org.uk/ and you will be wanting to move to the UK. :) 

One of Jo’s slogan was that you need to be “professionally interruptible” meaning that we need to have mentors who have lots of experience and connections in the field so that they are available to support the new generation on their path of integrated dance.  She reminded us all of the power of working together! Check out Jo's blog post about her experience at the convening here: http://www.unlimitedimpact.org.uk/biting-the-big-apple/

They had a video booth set up for participants to go and share their thoughts about the convening.  One of the questions they asked was: “What makes this gathering unique?”  For me it was that we were in the same room with doers, thinkers, writers and funders.  It was also unique in that first, second and third generation dancers and dance makers were in conversation with each other in open discussion.  It was a great mix of people who all have similar goals as creators and supporters of integrated dance.  The consensus was that we must work together to continue to secure the same opportunities for people with and without disabilities.

Talk about an inspiring and thought provoking time! 

PS.  Gibney Dance Center hosted the convening.  On the second morning they had a fire drill and we couldn’t help but make an improvised dance to the sound of the sirens as we waited for the drill to be done.  In the video you will see me (Silva Laukkanen), Olivia O'Hare and Connie Michael (from the board of directors of DanceAbility International).  The video was shot by Alito Alessi (founder of DanceAbility International.  Check it out below:

Crockett High School New Media Arts

Hi blog readers! This is April letting you know what I have been up to lately. For most of this semester I have been visiting Crockett High School on many Tuesday, Thursday, and Friday afternoons to be a part of our New Media Arts Program there. For five years now, the wonderful Mrs. Jane Comer has invited us into her Life Skills classroom to teach New Media Arts classes that combine traditional arts and technology. This year, we had a powerhouse team of teaching artists including Johnny Villarreal of The Edge of Animation Station who brought in his portable stop motion animation studio. We had Jo Ann Santangelo teaching photography skills with photo assignments in the classroom and outside around the school. And we had Stephen Sprague teach the process of filmmaking from storyboarding to filming to editing. I came in to tie it all together with art lessons and everyone’s favorite: quizzes!

Co-teachers Johnny, Jo Ann, and Stephen

The group of 15 students did a great job in all aspects of this class, which they were graded on. The showcase this week was a big success with parents, friends, and administrators in attendance. They were impressed with the photos, storyboards, and artwork on display in the classroom.

Student photos

And in the library, the students led the presentation of their movie premiere with each student standing up and talking about what they learned. Their film was called “The Big Show in the Big Storm” and included a tornado, a talent show, a theft, and a capture. Animation was included in parts of the movie, and a short reel of the student’s animations was also shown. I am very proud of all of the Crockett Life Skills students who participated in this program. We look forward to doing it again next year!

If you want to see the movie, subscribe to our VSA Texas YouTube Channel here, and you will be notified when it is ready to watch online.

A sign welcoming guests to the movie premiere

A Tale of Two Showcases, Part 2

After the whirlwind journey of our OMOD showcase in Austin, we hit the road to do the same thing in Houston. (Read all about Austin in Part 1 here!) Despite our hopes for an early departure last Friday (the 13th, as it turned out), we arrived at the Alley Theatre with only 15 minutes to spare before our rehearsal was set to begin. Houston welcomed us, as always, with traffic, a feud with our GPS, and massive, many-lane freeways we had to cross instantaneously to reach our exits.

Soon, the other van from Austin carrying Celia, Chris, Jennifer, and Adrianna arrived, the participants from our Houston program filtered in, and we began acquainting ourselves with the beautiful Alley Theatre Texas Room, running through the blocking of the showcase, and offering notes to each performer on how to best make their stories come alive. As in Austin, we were tremendously thankful to have Chris Strickling of Actual Lives fame on our team, and she, along with Alex, our Houston facilitator, Celia, and Nicole, worked wonders to bring out everyone's best performances yet. We wrapped up the rehearsal at 8pm and returned to our hotel for a desperately needed dinner and glass of wine (or two). By the time I collided with my bed, I was out like a light.

Chris coaches Adam on his speech during rehearsal.

The next day we all met at the Alley Theatre at noon, and soon after, the wave of stress that normally precedes a big showcase impacted us like a speeding train. I remember looking over the Texas Room at the fury of activity – participants practicing speeches before coaches, Alley Theatre employees arranging paperwork, ice water, and plastic cups on a table by the door, my attendant Nic gaffer-taping mic cables to the floor with the lightning speed and precision of someone with ample experience on film sets – and thinking, "there's no way we're going to be ready in time." Of course, I was wrong, and each heart-dropping problem was solved swiftly and intelligently.

A sign in the lobby of the Alley Theatre directs
audience members to our showcase in the Texas Room.

The showcase itself was certainly not free of bumps – the immediate failure of the lavalier mic mirrored a collision of wheelchairs at the start of the Austin showcase just a week before – but even so, the stories were simply too good to fail, and besides, what in life doesn't involve a bump or two? The unflinching demeanor of the participants in the face of each technical hurdle also reflected their impressive growth in the past six months as well as their confidence in their stories and their speaking ability. Every story resonated with humor, humanity, and the unique personality of the speaker telling it.

Special thanks to our friends at the Alley Theatre and Theatre Under the Stars, but more specifically Mary Sutton, Mara McGhee, Eileen Edmonds, and David Oliver, for their crucial support of our Houston program and making this all possible. Thanks also to our facilitators, staff, and other assistants including Alex Odom, Chris Strickling, Celia Hughes, Nicole Cortichiato, and Una Lau. Finally, a big congratulations is in order for all of our Houston and Austin speakers who gave excellent performances across the board. It was a wonderful honor to work with all of you, and I look forward to see what you all accomplish next!

The OMOD crew poses for a photo after the showcase.
From left to right: Adrianna, Alex, Jennifer, Veronica,
myself, Adam, Alisha, Russell, and John.

A Tale of Two Showcases, Part 1

(Photos by Camille Wheeler)

I have a bad habit of doing things backwards. In college, I completed my freshman composition requirements as a super senior. I moved to Austin before I had a job or even a place to live. Most recently, I completed an OMOD class as a student after having led several OMOD classes. Now I would not advise anyone else to do these things in the same order I did, but for me, the reverse order seemed fortuitous. After waiting ‘til my final semester to fulfill the composition requirement, UC Berkeley offered a "Disability in Film" class for the first time since I started school there, and that class gave me the opportunity to sink my teeth into material I truly cared about. Moving to Austin without a plan allowed me to find a unique organization that I literally rolled into one day not knowing it was the start of a powerful four-year journey into the world of self-advocacy and a kind of storytelling I never thought imaginable.

Similarly, if I had taken the OMOD class when I first began this job, I would have been so caught up in my post-college ego that I would have hardly learned a thing. Taking the class also came at a time when changes in my disability forced me to accept dictation as my new permanent way of writing. While I resisted this change as long as I possibly could because of how restrictive I imagined it, I realize now that dictation – and this whole class, for that matter – allowed me to break free of what always scared me most about writing: revision. Since writing without a mistake is virtually impossible through dictation, I learned to let the mistakes go, to accept the crappy first draft, to see a story as more than the nuts and bolts that hold it together.

Of course, the OMOD class experience was far from being one man's stubborn battle with Dragon Dictate, and I must mention Chris Strickling, our rock star facilitator, and the OMOD process itself, which is almost magical in its transformative power. Chris has the uncanny ability to cut to the heart of a story, and she always seems to say exactly what a writer needs to hear. One five-minute conversation with Chris caused me to rethink my use of verbs entirely, and I have had verbs on my mind ever since. I realized that my verb vocabulary has not grown an iota in the last four years, so I most certainly have my work cut out for me in the coming months!

Chris laughs while I present my story in class.

Beyond Chris, working in a class with seven peers with a range of disabilities and all in the same nerve-racking boat of writing and presenting personal stories instilled camaraderie, confidence, and a true revelation of what is good in a story. Unlike any creative writing class in college where feedback is either presented in cold online forums or shared around a circular table where you are asked to sit quietly while your peers report back on what they thought about your story for a grade, OMOD allows you to see the effect of your story on the actual faces of your peers as they hear it for the first time, to experience the thrill of their genuine laughter at humorous moments in your story or their heartfelt response when you reveal a part of yourself just like them.

The OMOD class culminated in a showcase for an audience of 40 people that resulted in a (well deserved, in my opinion) standing ovation. We began with an ensemble piece entitled, "Listen to My World,” in which we all described the sounds we hear or the images we see, if hearing is not possible, and what those sounds or images mean to us; Carlos Orellana closed the showcase with a beautiful piece showing that these sounds can actually present a complete picture of who we are and left us with the line, “It's not the footrests, the brakes, or the wheels that make the wheelchair, it’s the person inside,” to which we answered, “It’s always the person inside!”

The OMOD crew! From left to right: Sheri, Jennifer, Nissi,
Chris, Carlos, me, Michael, and Peter

Creativity Saves Lives – Art Heals

It is April here… I mean May. What I mean is, this is April writing the blog this week. And my favorite month of April is over. So that means it is May, which is Mental Health Awareness Month. Did you know that mental health has been observed in this month since 1949? Here at VSA Texas we want to stress the importance of art and creativity to mental health. We work with many artists in the community who use their artistic expression to relieve the pain of mental illness and to release thoughts and feelings that could be detrimental to their health if kept inside. We encourage everyone, whether you are diagnosed with a mental health disorder or not, to express yourself through art. Because as artist SylviAnn Murray says, “Creativity Saves Lives – Art Heals.” Here is one of her poems:

the M A N I C rainbow

First time I flew

The M A N I C rainbow

I told the world every thing

I knew I could BE

and thought I already WAS

though no one could see

Declared me “CRAZY”

for believing in my self

t o o    m u c h

Tied me down

left me ALONE

to  d e s p a I r

Convicted me of a  “crime”

Called  IN SANITY

They said

“There is NO  RETURN”

Here is SylviAnn with her book of poetry
currently for sale online and at local bookstores.

Poet Bryan Rowland says, “I write poetry to express myself when I am depressed or emotionally drained. This poem was written at a very dark time in my life, when I was going through a med change. It tells of being rejected because of my illness. But it also provides hope and acceptance.”

LIGHT

IN TO THIS WORLD WE ARE BORN

THRU BLOOD PAIN AND SIN

THIS IS HOW LIFE BEGINS           

LIFE IS SHORT AND DEATH IS SWEET

BUT IT’S FOR THE LIGHT WE REACH

IT IS WHEN WE ARE A CHILD

THAT WE LEARN TO

LIE STEAL AND CHEAT

LIFE IS SHORT AND DEATH IS SWEET

BUT IT’S FOR THE LIGHT WE REACH

FROM THE HEART THESE THINGS SEEP

HATE WAR AND MURDER

USING DRUGS AND BOOZE

CHASEING A HIGH TO GET BY

LIFE IS SHORT AND DEATH IS SWEET

BUT IT’S FOR THE LIGHT WE REACH

ON THIS PAINFUL RIDE WE CALL LIFE

LOVE FAITH AND HOPE

WE MUST KEEP THESE IN SIGHT

AS WE REACH OUT FOR THE LIGHT

LIFE IS SHORT AND DEATH IS SWEET

BUT IT’S FOR THE LIGHT WE REACH

You can hear from Bryan and SylviAnn at our monthly The Lion and the Pirate Unplugged Open Mic held at Malvern Books. Maybe you will be inspired to bring your own poem to share with us! Or just post it here in the comments section of our blog.