It took a year for me to go from seeing spots to being completely blind. During those twelve months Mike and I were determined to keep doing all the things we’d enjoyed doing together when I still had 20/20 vision.
Going to movies, for example.
Mike would hold my hand in the theatre, warn me where the steps were, lead me down an aisle and direct me to a seat. If I kept my head still I could find a clear opening in-between the blobs in my field of vision and narrow in on the action up on the screen.
I saw Prince’s body in “Purple Rain,” Darryl Hanna’s fin in “Splash.” I remember the round hat on the little Amish boy in “Witness.” I didn’t need Mike’s play-by-play back then. I could see well enough to figure out who was saying what to whom.
Except for that one time we went to see a foreign movie. What a mistake! I know some French and German, but I couldn’t concentrate on the words I was hearing while working so hard to see. Trying to track the subtitles was ridiculous—they just moved too quickly. We walked out on “La Cage aux Folles,” the first time I’d ever left a movie early.
My eyesight diminished quickly after that. Eventually the screen went totally black. Nothing the doctors could do. I gave up on movies.
But then film critic Roger Ebert started his Overlooked Film Festival in Champaign Urbana, where we were living at the time. The before-and-after lectures make the overlooked films more accessible to people like me. My guess is Roger didn’t have people with disabilities in mind when he decided to host talks and panels before and after films there, but hey, ain’t life grand when ideas like that turn out to be “universal design?!”
Roger Ebert’s Film Festival, affectionately known as “Ebertfest” by locals, helped me realize I can still appreciate movies. Among my favorite Ebertfest films over the years: Murderball, The Secret of Roan Inish, and American Movie.
Roger Ebert accepted an award from Access Living at the disability advocacy organization’s annual gala last night in Chicago. Access Living’s “Lead On!” award recognizes national leaders who have helped reframe the understanding of people with disabilities and who have helped to remove the barriers-physical and attitudinal-that exclude people with disabilities from career pursuits and everyday life.
Roger Ebert represents the very embodiment of what the award stands for. Thyroid cancer has left him unable to speak. He has no lower jaw, and friends tell me his face can be difficult to look at. Others might stay inside, slow down, retire. Not Roger. He just keeps on doing the work he loves-reviewing movies, Blogging, attending film festivals and continuing to manage his own festival, too.
Roger Ebert uses a text-to-speech program called “Alex” to make presentations at film festivals and conferences now. “For me, the Internet began as a useful tool and now has become something I rely on for my actual daily existence,” he told an audience at the Ted Conference earlier this year, explaining why he considers himself fortunate to be born in this era. “[If this had happened before], I’d be isolated as a hermit; I’d be trapped inside my head. Because of the digital revolution, I have a voice, and I do not have to scream.”
Thank you for your courage and your fortitude, Mr. Ebert, and congratulations on receiving this well-deserved “Lead On!” award. All of us benefit from hearing your voice.