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CoverStory

Ebert’s Disability Mindset
Earns Him a ‘Thumbs Up’

By Mike Ervin

Roger Ebert

Roger Ebert’s Ninth Overlooked Film Festival (aka “Ebertfest”) was coming up fast in 2007. Of course, Ebert appears at the festival in his boyhood hometown of Urbana, Ill., every year. It wouldn’t be Ebertfest without Ebert.

But some people close to him were advising him not to go. This would be his first major public appearance since his surgery to remove a portion of his cancerous lower left jaw. As Ebert wrote in an entry in his blog “Roger Ebert’s Journal” that April, “I’m told that paparazzi will take unflattering pictures, people will be unkind, etc. Frankly, my dear, I don’t give a damn.”

Ebert wrote that he could no longer speak and that his mouth droops open. “I was told photos of me in this condition would attract the gossip papers,” he wrote. “So what? I have been very sick, am getting better and this is how it looks. I still have my brain and my typing fingers ... We spend too much time hiding illness. There is an assumption that I must always look the same. I hope to look better than I look now. But I’m not going to miss my Festival.

“Being sick is no fun. But you can have fun while you’re sick. I wouldn’t miss the Festival for anything!”

Roger Ebert giving the signature thumbs up sign

Four years and three unsuccessful surgeries later, Ebert’s speech still hasn’t been restored, and he has given up trying to get it back. “Three strikes and you're out,” he wrote in an e-mail interview for this profile. “After every surgery, more was missing. I'm holding on to what I have! Also, there's the ordeal of rehabilitation: I had to learn to walk again every time, because of muscle atrophy during enforced post-surgical bed rest.”

And so Ebert carries on with enthusiasm. He communicates using a speech application on his Mac computer or simply by writing notes. He continues to write eloquently and prolifically in the Chicago Sun-Times and in his blog, not just about movies but a world of topics.

He’s also back on television every week on “Ebert Presents at the Movies," which he produces, along with his wife, Chaz. The show is now airing on 320 public television stations nationwide. In the familiar format of his movie review shows with the late Gene Siskel, two film critics exchange critiques, and Ebert contributes a video-recorded review that he has written but someone else has narrated. And then Ebert appears on camera to give the film his trademark “thumbs up” or “thumbs down.”

No doubt some have discouraged him from appearing on the show, too.

“I refuse to hide,” he wrote. “What you see is what you get. Chaz and I are producing it, dammit. Why shouldn't I appear?”

The Pulitzer Prize-winning journalist and author of 18 books can no longer consume food or drink by mouth, so he eats through a tube. He employs a full-time, live-in personal assistant named Millie who, he says, “changes my dressing, cleans my mouth and throat, feeds me, prepares and juices fruits and vegetables to supplement my canned nutrition, and goes with me when I drive, because if you can't speak it can be tricky if you run into trouble.”

Even though Ebert is a wealthy man, one of the harsh realities of living with a disability, he has experienced, is the heavy price tag it carries.

“My medical expenses were astronomical, and I was lucky to have two good work-related insurance plans, one of which I maxed out. I was lucky also to have a good income for many years, and indeed today I still work for the Sun-Times. My major expenses right now are my caregiver, my medicine and my nutrition. One thing that shocks me is how hospitals price so many meds and other products that are clearly available for much less on the Internet, and how insurance companies won't reimburse you if you obtain such products outside ‘approved’ channels. My g-tubes, for example, are ridiculously cheaper on Amazon.”

Siskel died in 1999 of a brain tumor, and through it all he was very closed and private, preferring not to discuss his situation publicly. But Ebert continues to be wide open and up front about the turn his life has taken. “People will talk anyway,” he wrote. “I'd rather be part of the conversation.”

He writes about his new life with humor, as in his recent blog entry “Leading With my Chin,” about his new chin prosthesis: “After surgery, I studiously avoided looking at myself in a mirror. In my mind my face was still whole. This was not the case, and one day in the hospital Dr. David J. Reisberg came to visit. He was a professor of craniofacial medicine at the University of Illinois in Chicago, and a specialist in facial reconstruction.

“I suggested a false beard which I would wear suspended from hooks over my ears, like a kid playing Abe Lincoln in the school play. ‘It's not like I think I'm fooling anyone,’ I said.”

Ebert isn’t afraid to mourn. His blog entry “Nil by Mouth” is about not being able to enjoy food or drink. “When we drive around town,” he wrote, “I never look at a trendy new restaurant and wish I could eat there. I peer into little storefront places, diners, ethnic places, and then I feel envy. After a movie we’ll drive past a Formica restaurant with only two tables occupied, and I’ll wish I could be at one of them, having ordered something familiar and reading a book.

“What I miss is the society. Lunch and dinner are the two occasions when we most easily meet with friends and family. They’re the first way we experience places far from home -- Where we sit to regard the passing parade. How we learn indirectly of other cultures. When we feel good together. Meals are when we get a lot of our talking done -- probably most of our recreational talking. That’s what I miss. Because I can’t speak that’s another turn of the blade. I can sit at a table and vicariously enjoy the conversation, which is why I enjoy pals like my friend McHugh so much, because he rarely notices if anyone else isn’t speaking.”

Prior to becoming disabled, Ebert says his “disability consciousness” was higher than most nondisabled people. That’s partially attributable to his 25-year friendship with Marca Bristo, president of Access Living of Metropolitan Chicago. “ I observed her as I got to know her, and saw what a full life she was leading and what an effect she had on society.”

But back when Ebert was a sophomore at the University of Illinois in the 1960s, he accompanied a group of wheelchair athletes on a six-week tour of South Africa. “I was one of the able-bodied assistants, living, working, traveling and rooming with the wheelchair guys and girls.” U of I, a leader in accessibility at the time, had a very active wheelchair sports program.

“A disabled RAF pilot in South Africa found out about the program and wheeled his chair from one end of the country to the other to raise funds. A team of athletes was to give demonstrations. This was in a country where most 'plegics were simply parked in bed. I heard a lot, saw a lot, learned a lot.”

All these encounters helped ease Ebert’s transition into the world of disability. Being a writer with a large loyal following has also given him a positive focal point in his new life. He wrote about that in “Nil by Mouth”: “The food and drink I can do without easily. The jokes, gossip, laughs, arguments and shared memories I miss. Sentences beginning with the words, ‘Remember that time?’ I ran in crowds where anyone was likely to break out in a poetry recitation at any time. Me too. But not me anymore. So yes, it’s sad. Maybe that’s why I enjoy this blog. You don’t realize it, but we’re at dinner right now.”

Ebert isn’t trying to be an activist. He’s just trying to tell the truth, he says. But his honest writing and insistence on continuing to lead a public life on his terms are acts of affirmation and defiance that add great credence to the notion of disability pride. Ebert is putting his disability to good use.

“The best thing that has happened is that it forced me to slow down and contemplate life itself. It has forced a third act upon me.”

Mike Ervin is a writer and member of ADAPT, a group that works for the civil rights of people with disabilities.


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