Op-Ed: The Disability Known as Ignorance Is 100 Percent Curable
As a filmmaker, I spend my life dreaming up stories and characters and making movies out of them. Over the years, I have developed a certain knack for imagining myself into another person’s shoes, into feeling what they’re feeling, thinking what they’re thinking, knowing instinctively how they will respond to the challenges life hurls their way. That’s what being a writer and director demands; being a student of human nature and of life, a craftsperson, a thinker, a tinkerer.
I have always been fascinated by the complex relationships between brothers and sisters, but rarely see films about brothers and sisters that “get it right.” As a brash young man, I decided that I was going to wow the world with my talent by writing that great brother/sister story. After beating my head against the computer for what felt like decades, I realized that I was not a good enough writer to “get it right” either; so I abandoned the project.
One night after expressing my frustrations to a documentary filmmaker friend, she suggested that instead of writing a script, I should interview my younger sister Alyssa—who is challenged by a developmental disability and epilepsy—when she came to visit me in California.
“You never know what’ll happen.”
She was right. Lost Child?, the film I ultimately made with and about my sister Alyssa changed my life profoundly—as a filmmaker, as a person, as a brother.
I shot the first of many interviews with Alyssa in the summer of 2004. Looking back, I realize that I did not have a real relationship with her at that time. I saw her once or twice a year. I thought I knew what her life was like. In reality, we were strangers to one another. We had lived on opposite coasts for 20 years, and the distance had seeped into our relationship.
To make the film, I followed Alyssa around Chicago for weeks at a time with camera in hand. As I did so, “acceptance” revealed itself to be an overarching theme in Alyssa’s life, and “ignorance” a recurring theme in mine.
I was shocked at how ignorant I was to the challenges that Alyssa faces daily. How had I missed this? And if I was so oblivious, how could I expect others to understand the depths of her struggles, or even just care?
Alyssa has learned to accept her physical and intellectual limitations, to accept the lack of opportunity and limited job prospects for someone with her challenges, to accept her need for medicine to control her seizures and keep her body “functioning properly.” She works hard to articulate the challenges she—and everyone like her—faces, and has looked deeply inside and come to accept herself for who she is, warts and all.
How many of us have done this same hard work?
For me, I was shocked at how ignorant I was to the challenges that Alyssa faces daily. How had I missed this? And if I was so oblivious, how could I expect others—who might have no real connection with someone with a disability and whose attitudes have been shaped by a media that rarely tells their true stories—to understand the depths of their struggles, or even just care?
Leading up to the U.N.’s International Day of Persons with Disabilities 2012 on December 3, I wonder if it is fair that Alyssa must also accept the failure of other people to see her as someone worth knowing.
Must she also accept being dismissed as less than fully human by many people who cross her path?
Should she have to accept living in a society that does not value what she has to contribute?
Or can we—as a nation and a people claiming to be committed to the dignity of all—work toward true inclusion for all our kin, including those challenged by disabilities?
Making Lost Child? brought Alyssa and me closer together than we have ever been, and we talk nearly every day. She turns to me for help and advice, and I do the same, calling her when I’m feeling down or when I just want to share a laugh or hear hers.
More importantly, Lost Child? gave Alyssa a voice and an opportunity to share her experience with the world. She has her own blog now (The Wild Frog Blog), and being heard is something she has begun insisting upon.
Documentary and fiction films about and by individuals with disabilities, sharing their stories honestly and openly, can help change people’s preconceptions and lead to a more inclusive world. Such films are one way to start changing the world for the better, and I hope we see more of them over time. But it is not enough to wait for someone else to change the conversation, and I implore you to take the first step yourself.
The next time you cross paths with someone challenged by a disability, please don’t turn away. Instead, stop and ask them their story. Like my sister Alyssa, every individual challenged by a disability has something to teach us about their lives, and ultimately our own.
Who is the person closest to you that is challenged by a disability? Tell the story in COMMENTS.