Robert Rummel-Hudson beat me to the punch this week in his discussion about the HBO movie, Temple Gradin. I haven’t seen the movie yet—one of the downsides of not having cable television and having a 4-year old who doesn’t go to sleep until 10pm. But given the chance, I would like to see it, since I do think that Gradin’s story about how she came to design cattle chutes is compelling. I also haven’t seen Extraordinary Measures, but aside from time and mediocre reviews, that movie seems too close to home for me— I like my movies to be a bit more of a relief than a reminder of my daily burdens and responsibilities. I’ve been thinking about movies like these that attempt to depict the often indescribable worlds of those living with a disability and/or life threatening illness. And I think what grinds at me is not the attempts to represent physical/developmental disabilities and the struggles that go with them, but the heroic depictions that inevitably make for a good story. Like the trailer for Extraordinary Measures claims “Don’t hope for a miracle, make one.” Well dammit, I’ve been trying to make a miracle since the days we first found out that our daughter has a rare and fatal neurological disease. But it takes more than one single person to address these large scientific mysteries.
The heroic tales we tell can often leave out the messy parts of life. Most doctors, as altruistic as they may be, cannot single-handedly hurdle over all the barriers set up by the insurance companies, the FDA, their colleagues, capitalism, and their own body of knowledge. There is no Harrison Ford out there working day and night to save Sylvie and the others like her. There are perhaps small hoards of researchers who are trying to figure out how to slow the disease down or detect the disease earlier. There is a disjointed pool of doctors and scientists that are trying to unravel how and why genetic mutations occur and how to treat them. But there is more money to be made improving and selling Viagra® than there is in finding a cure for rare and complicated diseases. And even if I had trillions of dollars to throw at the problem, money may still not create a miracle.
Movies like Extraordinary Measures, Lorenzo’s Oil, My Left Foot, or The Miracle Worker are said to be inspired by true stories of real people. I’m still waiting for someone to call me for the movie rights to my family’s story! I’ve been thinking of how we could possibly be an inspiration for an HBO movie where we get to be superheroes. First, in my superhero saga we are wearing pajamas a lot of the time. And the house is a bit messy, and both parents are a bit frazzled in a Homer Simpson kind of way. A bulk of the story would include some sub-plot relating to fairies and princesses—where papa is the huntsman, sister Sylvie is the princess mermaid, and mama sometimes plays the queen, sometimes the giant, sometimes the dragon. It depends on who is needed to complete the storyline and/or performance. On the other hand, maybe we would look a little bit more like The Incredibles—that quirky Pixar animated family that tries hard to fit in with “normal” society by hiding their super abilities. My twins would have unpredictable wonder powers, such as turning invisible at opportune times, running at 200 mph or turning slightly demonic if provoked. Papa and mama are adventure-seeking crime fighters, saving lives and battling evil with their buff physical strength.
Ideally we would galvanize the multiple families from around the nation to gather on the steps of the White House and Congress and demand that more medical research and funding go into treating our sick family members. We would demand, with rousing speeches and colorful banners and snappy slogans, that our educational system be better funded and equipped to deal with all children, including those with special medical/educational needs. Bills would pass with lightening speed, political and religious difference would be put aside, and there would be enough toilet paper in all the port-o-lets. Did I mention the great music, dancing and food that is available to everyone while we are rallying for this immediate and effective change? I am still working on the list of musical guests, but most definitely Chrissie Hynde and The Pretenders, Michael Franti and Spearhead, and They Might Be Giants will be invited. If you are looking for someone to play me in the movie about our life, I’d like you to contact Dolly Parton to see if she would be willing. She is absolutely charming: she has a lot more style, panache and spunk than I’m able to conjure up on most days. Aside from her singing voice, she has these great dimples, huge crossover appeal and a huge fan base.
The reality is that in my family’s superhero sage, papa feels a great sense of accomplishment if he gets both girls out the door to preschool by 9am and that Sylvie hasn’t choked on her breakfast. Papa also has an extraordinary skill of longitudinally recording over 20 months of Sylvie’s seizure activity to wow and impress the pediatrician and neurologists. It’s a good day if there are few tantrums and everyone has gotten enough rest.
In the review of Temple Gradin the New York Times the critic noted that the life stories of extraordinary individuals with disabilities are viewed by parents as “a yardstick for their own hopes.” I’m not sure I agree. One of the other reasons I am not eager to see Extraordinary Measures is that it is my fears, not my hopes that the film measures. These “tales of valor” may be extraordinary, but I think we can find hope and inspiration from the ordinary. Most of us—with or without a disability— are lucky just to get out of bed and get dressed each morning. In our quest for the superheroes or remarkable acts to serve as quick fixes to our children’s predicaments, we may fail to acknowledge the tons of people behind stage that are serving as emotional-financial-social support and providers for us. In fact, most of us must find hope in the ordinary, because most of us are superheroes only in our own minds.
Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 4-year old twin girls.