The first time I ever really thought about Roger Ebert it was because I knew he was warm, dry, and celebrating and I was cold, wet and furious. It was January 2005 in Chicago, and unsurprisingly it was snowing on me and members of Not Dead Yet as we staged a protest outside the Union League Club, surrounded by a row of news trucks. Two weeks earlier, on Christmas Day, my boyfriend and I had sat, horrified, at a screening of Million Dollar Baby. We’d been stuck right in the middle of a long row of people, unable to escape, watching Hilary Swank go from a strong and fearless heroine to fully balls-out suicidal the moment she became a crip. A quadriplegic crip, in fact, like many of my friends, including the people now huddled beside me. Behind the club’s ornate facade, Roger Ebert was awarding Million Dollar Baby the Chicago Film Critics Award for Best Movie of 2004.
Ebert had defended MDB on grounds of artistic integrity and its connection with great human dramas of the past. His opinion upset my boss, Marca Bristo, who was a founder of Access Living of Metropolitan Chicago, a politically active organization that provides services by and for people with disabilities, and, more to the point, a longtime friend of Ebert’s. Marca had expected him to see the movie for what it was, influenced perhaps by their friendship, and since he was known as a boldly liberal progressive. Marca was a hero to me. She’d told me about trying to explain to Ebert why the disability community was so very upset about this film. After I talked to a bunch of pals who were just as dismayed, we decided that Roger needed to hear the message a wee bit louder. The signs we clutched outside the Union League, accordingly, were magic-markered in all caps:
MILLION DOLLAR BIGOT
EBERT SAYS: THUMBS WAY UP FOR KILLING THE DISABLED.
CRITICS SAY: WE LOVE DISABILITY BIGOTRY
At the time, I was the visiting artist in the Gross Anatomy cadaver lab at UIC, and we happened to be studying the area beneath the mandible when I’d seen the film. I knew exactly how delicate and closely packed that area was, how much like a Swiss watch, with its tightly coiled vessels, tiny bones of the ear, and spongy pad of salivary glands. Watching Swank’s face being pummeled by boxing gloves made me nauseated. I had to look away from her bruises and swellings, though I knew they were mostly special effects.
The hinge of the jaw was the exact spot where a very real cancer would emerge in Ebert’s face one year later.
I had never protested a movie before—and haven’t since—but Swank’s character’s descent from pride into self-loathing mattered to me. MDB was right in line with every horrible picture I’d ever seen—moving and still—that had taught me to hate my own body. I am an artist and a disabled woman. I’d been drawing and painting portraits of people with disabilities for about ten years, in part to lift the smothering weight of shame from my own life, and from those of my collaborators. People like us mostly turned up in films like Freaks, Tod Browning’s roundup of the morphologically variant. Freaks had become a sort of mascot to the disability community. It wasn’t hard to identify with the violent sideshow performers as they closed in on their able-bodied torturers. And I’d come to MDB all excited after seeing Hilary Swank in Boys Don’t Cry, which had meant a lot to me as a queer woman—even though she’d died at the end of that one, too. At least she hadn’t asked for it.
Ebert’s defense of the movie was infuriating but hardly surprising, given that I couldn’t recall a single other mainstream critic ever questioning the frequent deaths of disabled characters in films. Dying nobly seemed to be the main reason to include a cripple in a script, unless said cripple was Monster of the Month. I did not know that Ebert already had had to contemplate his own mortality after multiple treatments for thyroid cancer. I saw him on television defending Eastwood’s movie, and he looked to me like an imposing and powerful presence.
On top of this, I’d found out about and was in contact with the very not-suicidal artist Katie Dallam, whose amazing life was the basis for F.X. O’Toole’s original story. Dallam’s life had a much more hopeful and interesting arc than the one traced in the movie, and yes, I understand what art is, thank you very much. As a narrative artist, I would not want someone to tell me that a story must hew to the facts or that what I want to explore in human experience is invalid. Come to think of it, I’ve been told the latter many, many times, over the course of a career that was slow to take on disability after being discouraged, to say the least, by professors, gallerists, collectors and critics. However, our culture has continually told the disabled that their very lives have no value. It has seldom supported art that tells a different story. Art that continues the damage of centuries should, at the very least, be shown as a failure of human potential. And as I learned about Katie Dallam, a boxer who had been severely brain-injured after a title fight, had gone through a long, slow recovery after a months-long coma, and had become a tough and ferocious artist, I couldn’t help but think about what a movie that followed her story would have meant to me. She too was enraged with the depiction of impairment in the film, so it felt like we were in each other’s corner.
Anyway, all of this had combined in anger and disappointment with Mr. Ebert, until I found myself standing in the falling snow, clutching a wet cardboard sign and trying to explain myself to the reporters who were shoving big fuzzy microphones in my face. They just kept asking, Don’t people have the right to die, but mainly, Why are you here? Why are you here? which at times felt to me like Why haven’t YOU died yet? Why do you want to go on as a cripple?
We never even saw Ebert that day. I’m sure he had come in much earlier, or through the bat-cave entrance for VIPs. The group of us watched for his big familiar body—it would’ve been hard to miss—but finally we gave up, never having made any contact with anyone at the dinner, and cold and hungry ourselves. My boyfriend and I saw ourselves that night on the evening news, the Officially Angry Disabled, flickering between snippets of Ebert and Eastwood talking about the Rights of the Artist. I thought, protest makes you look stupid and simpleminded and humorless, but at least there were actual scenes of people in wheelchairs on television. I wished I could just have hung a row of Dallam’s blazing paintings outside the club and gotten the message through via—well—art.
Then, in 2006, cancer came back, this time in Roger Ebert’s mouth. His doctors removed it, but immediately a blood vessel ruptured and caused irrevocable damage to the tissues of his face. In order to save his life they were forced to remove his entire mandible— the bones of the jaw.
I did not know about what had happened to him until after it became clear that the doctors could not restore Ebert’s original face. All of a sudden, I was seeing the most astonishing pictures. Roger Ebert did something virtually unprecedented in the history of media: he invited the cameras, the reporters, the great electric eye of the world to come see his new and permanent self. In pictures he often posed in a black turtleneck that made his face slightly more puzzling: was part of his jaw tucked into the fabric? There was one article in particular, in Esquire, with a photograph that I looked at over and over. I’d put my finger over the strange shape of his chin, and there was startling presence of fame, that plinth of forehead and observer’s gaze we all knew so well. How many times had I watched him and Siskel argue before I headed out for a Saturday night at the movies? Now Siskel was gone, and Ebert’s face was bisected by ravenous cells and the surgeon’s knife. There have been a handful of famous people who did not hide away after a transformative injury. But many, like Christopher Reeve, used their bodies to beg for a cure, or others, like Richard Pryor, were seen as saying good-bye to their professional lives. Ebert’s brazen presence was as new as the altered geometry of his bones.
Marca began telling Roger that he should sit for a portrait by me. She told me I had to convince him to be painted. So I sent Roger a proposal, and was thrilled when he said yes. That June, Roger Ebert was the “Lead On” Honoree at the 2011 Access Living Gala. I put on my best velvet frock and went to meet the man.
Ebert gave a funny and moving talk, using his voice board, and holding onto his wife Chaz’s arm as he moved slowly on and off the Navy Pier stage. He was no longer a rock but a reed. I went to sit down at his table. He was curled into a huge leather recliner that was docked like an ocean liner next to his wife’s chair. Chaz watched me closely, ready to chase me off if I drained his limited energy. As I settled in across from him, I looked at this face I wanted to paint.
His upper face was still sturdy and certain, a firm scaffold for the loose, soft flesh that draped down from his cheekbones. Because there was no mandible left, I could see his shirt through the open aperture of his mouth. There was no tongue I could see, no lower teeth, just black cloth shifting weirdly behind the V-shaped gap of his lips. I wasn’t entirely prepared for the effect. This was what I had tried to understand in all those photos, and as an anatomist and a portrait artist, I wasn’t immune to a disturbed fascination with what the doctors had done. Yet, undeniably, Roger’s smile was sweet and welcoming. Maybe the shape of his mouth had been created in the operating room, but it was echoed by the expression in his eyes. It was as if he could channel his entire being through the tiny, delicate muscles that rim the lids, like a dancer using the smallest inflection of fingertips and toes to bewitch the audience.
We spoke for a little while, physically and electrically, and made a plan to make a plan. He said, Call Chaz, she’ll set it up. But when I did, it was only to hear that Roger was back in the hospital, or was traveling in the last months he could do so, or was too fragile to work just now.
Last week, I made a note on my desk that said Contact Chaz. The next day Ebert announced his Leave of Presence. And the next day he was gone.
I’ll never know what we would have done together. The images I make are narratives, born of long, intensive conversations about my subject’s life and work. Ebert was going to send me his autobiography, but that did not come to pass either. A part of me was afraid to do his portrait. Two people I worked with have died, and each time I went into it knowing it was possible, in one case definite, making me feel a heightened responsibility to do them justice. There is a specific grief I felt after losing the kind of intense and intimate relationship that came as I looked at them and they looked back at me. People have told me that I should do Ebert’s portrait anyway, but when I work with someone, able-bodied or disabled, I do it in part to be changed myself, to be made different and bigger by entering the universe inside their skin. The portrait is meant to allow my collaborator to exist in a way he or she cannot do alone. Copying photos of the dead would have no point at all.
Yet I have been changed by Roger Ebert. When he let us see the fact of his face, he made us all bigger, he made a space free of shame but full of intention and intelligence. I’m not capable of believing in beauty that is not twinned with pain and survival. The body as history is, for me, the deepest and truest form of beauty. Each such body strips away the concrete veils that have covered and imprisoned me in my life.
And yes, I know that you’ve read a zillion tributes and I-Met-Roger-Ebert-Once blog posts this past week. I’ve met a lot of amazing people in my life. But no one else who has done quite this specific, invaluable thing.
I found this quote, from Life Itself, Ebert’s autobiography. It seems to say that he kept his own body out of the fray of the world: “I used journalism to stay at one remove from my convictions: I wouldn’t risk arrest but would bravely report about those who did. My life has followed that pattern. I observe and describe at a prudent reserve.”
It isn’t true. Because Roger Ebert was so fierce, so smart, so skilled, and so much in the world, he brought his face to us as a gift, a vast map to free and unfamiliar lands.