Tuesday, November 13, 2012

'The Sessions' -- Polio and Sex on the Big Silver Screen

(NOTE: The following has just been posted on Post-Polio Health International, and on International Ventilator Users Network. I'm biased toward this important organization, which also operates the wonderful Polio Place , but then I am on the PHI board.)
By William Stothers

Hollywood has a history of portraying people with disabilities as objects of pity, inspirational “supercrips” or embittered villains. So going to see a film about a man with a disability seeking to lose his virginity sets alarm bells clanging. “The Sessions” puts those expectant fears to rest.

Beyond “disability correctness,” however, for polio survivors this film stirs deep memories of our own growing up experience.

Based on the writings and life of Mark O’Brien, a poet and writer who had polio and spent most of his time in an iron lung, the R-rated film is an engaging, often lighthearted, portrayal of a 38-year-old severely disabled man who lives independently in an apartment in Berkeley, California. Mark manages his personal care attendants, gets out into the community on a gurney, writes poetry in addition to essays and articles for several publications.

He’s no wallflower or shut-in, but, like all of us, he has his self-doubts and struggles. He yearns for love and intimacy. He falls for Amanda, one of his personal assistants. Finally, he screws up his nerve to tell her he loves her. Pause. For while Amanda cares a lot for Mark, “love” and all that that means frightens her off. Mark is left feeling his old sense of low self-worth and shame. I’m sure many of us with disabilities have felt the sting of hearing “I really like you, but…only as a friend,” or words to that effect. I can relate.

Deeply distressed, Mark, who is a devout Catholic, consults his priest about his desire to experience sex. He wants permission to follow his therapist’s urging to hire a sex surrogate. After some dramatic reflection, the priest says he thinks God will give him a pass on having sex outside of marriage. “Go for it,” he says.

The film follows Mark’s halting journey with sex surrogate Cheryl. Sensitively played by actor John Hawkes, Mark stumbles and is awkward in his first encounters with Cheryl, who has her own learning curve but is very matter-of-fact and professional.

In their first session, Cheryl asks Mark: "Do you have any area of unusual sensitivity? Any parts of your body you don’t want me to touch?"

Mark responds, "I have normal sensitivity all over. It’s just that my muscles don’t work. You can touch me anywhere."

That’s polio for you.

You’ve got to see The Sessions for yourself to see how it plays out. But the context of the film is pretty realistic in showing that a polio survivor with a significant disability can live a remarkably normal life and experience mature feelings of real intimacy and love.

Kathi Wolfe, a writer and poet herself who has a disability, writes: “… it was with Mark as it has been and will continue to be for so many of us: joy, pain, hurt, pleasure, humor, shyness and chutzpah are indelibly intertwined in life. Keats spoke of what he called ‘negative capability’ – of the poet being capable of being ‘in uncertainties, mysteries, (and) doubts...’”

In reviewing the film, long-time disability advocate and scholar Anthony Tusler said, “O’Brien was one of those polios that used his intellect and sense of humor to connect with the wider world. We’ve known many of them, and most are now gone. I’m not sure what it is about polios. One theory of mine is they gained confidence in who they were in the open wards and the polio camps of the 50s. They found their disabled brothers and sisters early on, and they changed the world…. [T]hey refused to believe it was Okay to exclude their disabled brothers and sisters, their community, from life, liberty, and the pursuit of happiness.”

The reaction among people with disabilities has been overwhelmingly positive. People embrace the honesty and matter-of-factness of how disability, especially polio, is portrayed.

The credit goes to Ben Lewin, the screenwriter and director who is a polio survivor. He has said that he wanted Mark to be depicted as a human being who could, like all of us, be at times, "a jerk." The cast, Hawkes as Mark, Helen Hunt as Cheryl and William H. Macy as the priest, are spectacular, and bring the great script to vibrant life.

The Sessions is now in theaters across the country and in Canada. Go see it. I would be surprised if it doesn’t unlock some memories, both good and uncomfortable. It did for me.

© 2012 Post-Polio Health International

Saturday, October 27, 2012

Really Little Italy

One of a series taken during a photowalk of San Diego's Little Italy a week ago.

Thursday, September 27, 2012

Saturday, July 21, 2012

MY FEET, SIX INCHES FROM THE GROUND: Disability and Our Connection with Nature

(NOTE: The following has just been posted on Children and Nature Network. It is a version of a piece written for PHI Communique, a publication of Post-Polio Health International. I'm biased toward this important organization, which also operates the wonderful Polio Place , but then I am on the PHI board.)

When I was 8 years old, my family moved from a big city to a tiny town (pop. 600). We lived in a rented house, complete with an outhouse. I loved it.

There were farms nearby, and I got up-close to a different world, helping to herd and milk cows, “assisting” in the fields, and “riding” farm horses.

There was a small creek down the hill from our house. My buddies and I fished from the bridge over the creek. (I am on the right in this photo taken by an area newspaper photographer.)
I wandered along the mostly ankle-deep creek, looking for fish or turtles. About a half-mile from home, a little railway bridge went over the creek; at times, a couple of us would try to catch fish there, and while we did, we would build a little fire to heat up a can of pork and beans.

Riding my bike around
country roads, exploring the woods, climbing trees, getting caught in the rain, jumping into puddles and off a bridge and swimming in a deep pool said to be filled with old tires and other discarded trash, consumed summers.

I loved it all. There is something about getting dirty, touching and feeling the real natural world that thrills and energizes me at some level.

Two years later, when I was 10, polio came calling and for the next three years I worked (“worked” is the right word isn’t it? for polio people for sure) my way through rehab institutions away from home.

Then I returned to our newly built house in town. No more outhouse – thank heaven, since that old one was not accessible!

And there were many other “no more’s” No more wandering along the little creek, no more fishing from the bridge, no more exploring the woods, no more riding my bike.
Now when I went out, someone pushed me in my wheelchair. My feet stayed put, about six inches off the grass, the sidewalk, the gravel roads.

The natural world seemed to slip away, vibrancy fading out of touch. After a while I didn’t notice, caught up with just getting used to doing as much as I could on wheels.

Fast forward several years, and I was back in a big city, working at a newspaper and living on my own (praise be to power chairs!) in a downtown high-rise apartment building. It was there in that ninth-floor apartment that I began to feel a certain anxiety.

I finally realized that I was going back and forth to work and leading a busy life, but that I was going for long periods of time without seeing anything green and growing. No grass. No trees.

I tried growing corn on my balcony. No corn either.

After three years, I was able to buy a house, with a backyard and elm trees. It was wonderful.

I took up photography and found myself spending lots of time in local parks, getting close to and making pictures of flowers, plants and outdoor life. That anxious feeling ebbed.

Nature, like the rest of society, is becoming more accessible to people with disabilities of all ages. Due to the efforts of people with disabilities, parks national, state and local are providing accessible trails and features that make it possible to get closer to flowers, trees and even animals – without paving paradise. And people with disabilities are more active than ever in outdoor sports, recreation and games. Or just hanging out in neighborhood yards and little parks.

But the truth is that people with disabilities, especially kids, still tend to be more isolated, and participate less in social and community activities with their peers. More home alone, even, than playing outside or exploring their world by themselves. Organizations such as Easter Seals (and many local and regional groups) offer more organized activities, from summer camp and sports.

But I fear too few kids get much unregulated, unorganized time encountering the natural world. Kids with disabilities love to touch the wonders of the earth, getting dirty in the grass, trying to grab a lizard or a worm or a bug. I still do too.

In the many years since then, I have kept up my picture making my picture making and it helps me connect with the real world around me.

My feet continue to skim six inches above the grass. Still, I can stick my nose closer to the roses in my front yard and take in the perfume. I can rub my hands over the bark on the big tree in my back yard. And even though the techs tell me not to, I can’t stop powering through puddles. Splashing and grinning. Life is good.