Thursday, June 23, 2016

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!

Friday, June 17, 2016

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!

Thursday, June 2, 2016

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: