Journal Volume 3 - June 2008
I am so pleased and proud to announce that Allen Rucker will be a regular contributor to The Journal of the Transverse Myelitis Association. Allen contracted TM in 1996 at the age of 51 and was paralyzed from the attack at the T-10 level. Allen recently published a memoir about his life after getting TM; “The Best Seat in the House” is now available in paperback. As his memoir so brilliantly conveys, Allen is on a journey. That journey has taken Allen into a life as a speaker and an advocate for the transverse myelitis and disability communities. Through his many speaking engagements, his appearance on the Montel Williams Show, and as a contributing writer for ABILITY and New Mobility Magazines, Allen is raising awareness about transverse myelitis. Allen has such a human perspective on life; Allen is such a mench. I am so honored and grateful that Allen is willing to share his wonderful perspective with our community as a contributing writer.
Allen Rucker was born in Wichita Falls, Texas, raised in Bartlesville, Oklahoma, and has an MA in Communication from Stanford University, an MA in American Culture from the University of Michigan, and a BA in English from Washington University, St. Louis. He is the author or co-author of nine books of humor and non-fiction. “The Sopranos Family Cookbook,” one of three books he’s written about the Sopranos, was a New York Times #1 bestseller. The memoir co-written with country music star, Gretchen Wilson, “Redneck Woman,” is currently #29 on the New York Times bestseller list.
As a TV writer-producer, he co-founded the experimental video group, TVTV, and has written numerous network specials, documentaries, and teleplays, including the series, “The History of White People In America,” with Martin Mull; “Christopher Reeve: A Celebration of Hope” (Emmy nominee); the original HBO movie, “Hometown Boy Makes Good,” starring Anthony Edwards; “CBS: The First Fifty Years;” “Big Guns Talk,” a history of the Western; and “Family Values: The Mob & The Movies.”
His most recent TV project is an adaptation of David Maraniss’s bestselling book on Vietnam, 1967, “Two Days in October,” originally broadcast on PBS’s “American Experience” in October, 2005. The highly-acclaimed program won both the 2006 George Peabody Award and the 2006 Emmy Award for Exceptional Merit in Nonfiction Filmmaking.
He is the recipient of the duPont-Columbia Journalism Award, the Writers Guild Annual Award, and two CableACE Awards, among others. In 2005, he received the special WGA Joan Young Award for career distinction as a writer with a disability. “The History of White People In America” was honored by the Museum of Television & Radio in 2001 and TVTV was given a full MTR retrospective in 2004.
Allen also teaches at the USC School of Cinema-TV. He lives in LA with his wife, Ann-Marie. They have two sons.
Learning on the Job
From the moment I began to flog my memoir about life after transverse myelitis, “The Best Seat In The House,” I shamelessly passed myself off as a world-class expert on this strange malady. It was easy – not one radio, TV, or print reporter I encountered had ever heard of it. For all they knew, I could have been talking about the bird flu or lumbago. As I told a group of TM cognoscenti at a recent symposium in Anaheim, I could say anything and the half-listening media types would eat it up. “Yeah, researchers now believe TM comes from UFO’s and largely attacks people living in trailer parks in rural Arizona…” Mad Mel in The Morning, the AM radio jock on the other end of the phone, would invariably go, “Wow, man, that is so f-ing cool – you got a disease from Mars, man!”
I was on semi-safe ground. I certainly knew what is was like to be hit by TM and to try to figure my way out of the fog, but I had only a George Bush-level of knowledge of what actually hit me. I could have easily picked up a world of insight from others who already had it, but frankly, in the early years of living with the condition, I didn’t want to know other people who already had it. I didn’t want to hang out with disabled people of any sort. If you think you’re a freak, you don’t want to broadcast it by joining a freak parade. I saw it like being obese and going to a convention of other obese people. “Jeez, I’m the fattest one here!” I was in that nether world between abled and disabled and felt uncomfortable and out of place in both. I was both an outsider among insiders and an outsider among outsiders, too.
So I first set my sights on feeling comfortable in the able-bodied world, since that was the universe of a) most of the people I knew and b) most of the people I’d be getting a job from in my newly disabled state. A big chunk of the book I wrote deals with just that – how to use humor, one of the only arrows in my personal quiver, to negotiate my way through all the awkward and embarrassing public dealings with “them.” As I wrote, I felt like the paralyzed equivalent of the only black man at an all-white Kiwanis Club meeting. Beyond the Kiwanians who avoid you all together, you have to face the walking-on-eggshell nervousness of the ones who called you “my man” and wanted you to know that they knew who Miles Davis was. Hey, they’re just being nice, you tell yourself, patronizingly nice. To this day, my wife can’t understand why I grit my teeth every time someone sees me getting out of the car and runs up, grabs my half-assembled wheelchair, and says, “Can I help you, sir?”
“No!” I want to shout (but never do), “How do you think I got into the g-d car! I’m not helpless! I’m just paralyzed!”
Anyway, somewhere along the line, despite my best efforts to only associate with “normal” people, even the jerks who wanted to treat me like their granddad, I began to mingle with other disabled types. A representative at the Writers Guild of America, my union which just won a big strike, called me to give me an award – the WGA Joan Young Award for distinction as a disabled writer. I was terribly flattered and ended up at an industry award ceremony honoring disabled performers, writers, producers, and fellow travelers in TV and film.
“Hey,” I said to myself, after a couple of glasses of free wine, “I like these people. They’re just like me!”
Soon I was going to regular meetings of the Writers With Disabilities Committee at the WGA. The mission here was simple: get more disabled writers jobs so they can write more disabled characters for more disabled performers. For a host of reasons, Hollywood has an anathema to including the disabled in the zillions of hours of entertainment it pumps out annually. A studio will knock out a film every few years starring Dustin Hoffman or Tom Cruise as a heroic cripple, bag a shelf full of awards, and feel they’ve done a bang-up job of promoting diversity. You try to let them know that there are 56 million disabled people out there and only a pathetic .05% of all speaking characters on TV in a given year are disabled. They’re getting the point, slowly. Really, really slowly.
But the cause is only part of the reason I make these meetings. Mainly I show up for the other members. They are a collective hoot. One of my favorite lines ever about who should be counted as “disabled,” a constant debate in the diversity world, came from a longtime WWD member named Karol Silverstein, disabled since birth from a rare arthritic bone condition. In response to the view that anyone from marijuana abusers to neatniks should be included, Karol made a droll announcement.
“I think a disabled person is someone who has to put their underwear on with a stick.”
Amen. Next item.
The more Karols I ran into, the more I realized I was operating under a culture-wide delusion, even after I had become paralyzed. I always thought disabled people came in three distinct personality types – Mean, Crazy, or Pathetic. Sure, there are occasional media idols like Christopher Reeve, but I figured even the celebrity crips were probably mean, crazy, or pathetic after they got home from a day of holding Oprah’s hand. The heroic-seeming stiff upper lip, I know from personal experience, is a face many of us put on just to make the full-bodied feel better. Unfortunately, the myth of the Heroic Disabled feeds the misperception, even to ourselves, that we aren’t just, you know, normal.
So, in only a few short years of laughing it up and learning from all kinds of people who just happen to be disabled, I’ve come full-circle. I don’t avoid them now. I go looking for them. This search has led to all kinds of memorable encounters, from kindred souls like Sandy Siegel to speaking before the disabled employees of the Nashville branch of Goodwill Industries, a great organization, to spending a day with single and double amputees from Iraq and Afghanistan at Walter Reed Hospital in Silver Spring, Md. That was a hell of an experience, believe me. I left that building with my first deep connection with the wars being fought in our name.
Whenever I can, I steal a line from a report by Dr. Adam Kaplin from Johns Hopkins on TM, MS and their relation to depression, a report I first read in this very journal. He quotes a study done by a researcher named Steven Mohr from UC-San Francisco, wherein Mohr and his troops simply called up a broad sampling of people with MS and asked them how they were doing. The statistic that I tout to anyone who will listen is that a full 60% of the respondents said that having MS had enriched their lives. I repeat – to these people, MS had enhanced the full measure of living. They went on to say that it had made them more sensitive, more tolerant, even more motivated to achieve.
I love to mention this stat because first, people like to hear it, and secondly, it’s true. At least it’s true for me. After TM, my life didn’t become more circumscribed and less varied, more worrisome and less free-spirited, more inward and less outward. It became richer in the variety and soulfulness of the people I’ve encountered, richer in the friendships I’ve made, and richer in purpose.
Unfortunately, it didn’t make me any richer financially. I guess that will come with the movie version of ‘‘The Best Seat In The House.” If George Clooney were in a wheelchair, he’d have a clean shot at playing the lead character.