Paralyzed for Life. No laughing matter, right?
Think about it. Those three words strike terror in the hearts of the nondisabled population. They carry a freight-load of negative cultural baggage, perpetuated by tear-jerking television melodramas that present “paralyzed for life” as a fate worse than death. This damaging mainstream perception is gradually fading as society grows more enlightened about the realities of disability, but echoes of it remain stubbornly persistent.
Allen Rucker must have known this when he titled his book The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed For Life. Note the ironic counterpoint that craftily piques curiosity: A casual book-browser may well ask: How can being paralyzed for life give you the “best seat in the house?”
As an established writer in Hollywood with experience in a variety of show-biz occupations, Rucker is uniquely equipped to answer that question with engaging candor and personal revelation. A T10 paraplegic since 1996 due to a rare, paralyzing case of transverse myelitis at age 51, he also has a valuable perspective that combines the wisdom of his nondisabled experience with the physical and psychological complexities of becoming suddenly disabled at an age that defies the statistical norm.
Rucker’s established penchant for jaded humor, along with his willingness to indulge the reader’s curiosity, makes The Best Seat (now in paperback from HarperCollins) one of the most engaging disability memoirs to date. And while some long-time readers with disabilities may respond with a “been there, done that” attitude regarding Rucker’s 11-year perspective on disability, it’s clear that he (now 62) is primarily writing for a nondisabled audience.
Bolstered by an abundance of glowing reviews, celebrity blurbs, and almost unanimously positive reader comments on Amazon.com, The Best Seat is a probing quest for meaning from a wheelchair user who’s still relatively “new” to his disability experience. Essentially, Rucker shares a “virgin crip” perspective as he continues his transition from life on two feet to life on four wheels. It’s an ongoing process, and it’s only natural that Rucker hasn’t completely bid “A Farewell to Legs,” a humorous spin on Hemingway that he originally considered as his book’s title.
“To be perfectly honest, I don’t think of myself as disabled,” said Rucker during a recent telephone interview. “I’d rather walk than not walk, and I don’t define myself as disabled because I’d lived so long before it happened. I also think it’s just a healthy attitude to not let yourself be labeled or think of yourself that way. I’d lived a relatively long life and had that perspective, whereas the book only covers the first four years of my disability. I’d given thought to writing the book earlier, but in retrospect I’m glad I waited, to gain more perspective. Prior to that, I was working my way out of the fog.”
Merging ‘Before’ with ‘After’
With the sudden onset of TM, Rucker found his life utterly changed within hours. Barring any miracle cures, “paralyzed for life” appears to be an accurate prognosis. Like anyone who’s newly disabled, Rucker was forced to confront his own pre-established attitude toward disability.
“For the first two years, disabled people were the last people I wanted to hang out with,” Rucker said. “It was like that Groucho Marx joke: ‘I wouldn’t want to belong to any club that would have me as a member.’ Disabled people made me feel freakish. As time passed, I realized that they’re just like everyone else. Writing the book changed my perspective as well. I gradually discovered that the more you accept your disability, the less you feel defined by it and the more you feel connected to other people with disabilities. There’s some irony there, but it works.”
The transition didn’t come easily. Described on his book’s hardcover dust-jacket as a “baby boomer, husband, father of two, and aging Hollywood also-ran,” Rucker had to confront challenges that many younger, newly disabled people never experience. Although he frequently felt isolated during his adjustment process, his wife Ann-Marie and two sons were intimately involved, and their familial crisis adds a crucial dimension to his book, along with the anger, confusion, and anguish that accompanies the initial trauma of paralysis.
Some of Rucker’s before-and-after perspective is potentially offensive, or at least mildly controversial, to those with deeper disability roots. Others may dismiss specific passages as “rookie mistakes,” and Rucker (in a recent article for Ability magazine) openly admits that “even after a decade, I still feel like a babe in the disability woods.”
So, when Rucker writes in his closing chapter that seeing wheelchair users trying to dance makes him feel “inadequate, embarrassed, and resentful,” he’s clearly wrestling with an awkward, nondisabled mindset. “When you have no legs, or no use of your legs,” Rucker writes, “you can’t dance, and that’s that.” However understandable that opinion might be to nondisabled readers, it’s likely to puzzle people like Charlene Curtiss, a paraplegic who has brought international attention to the art of wheelchair-integrated dance.
More often than not, however, Rucker proves himself a savvy observer of disability even as he’s growing accustomed to his own. One of his book’s funniest chapters, “Cripple Dos and Don’ts” (see excerpt) should be required reading for people of all abilities. It’s loaded with hilarious observations about wheelchair etiquette, parking permits, and exploiting the sympathy of others for the sake of “special consideration.”
It’s here that Rucker’s “before and after” perspectives merge: By humorously instructing nondisabled outsiders from a disabled insider’s position of authority, both sides benefit from Rucker’s middle-man position — especially those so deeply invested in their own disabled identity that they’re incapable of appreciating any other viewpoints. With 51 years of nondisabled experience to inform his take on disability, Rucker’s claim to “the best seat in the house” seems particularly valid as he simultaneously enlightens the ignorant while preaching to the choir.
The Dream Factory
For Rucker, achieving his dual perspective was complicated by the challenge of putting his 30-year “so-called career” through an unexpected crash-course in occupational rehab. Born in Texas and raised in Oklahoma, Rucker (with master’s degrees in communications and American culture) has lived in Los Angeles since the early 1970s. As a writer and producer of network TV specials, documentaries, and original teleplays, he made a decent living in an industry where careers can flame out overnight.
Rucker enjoyed modest success in the ’80s with a variety of projects, including the satirical cable series The History of White People in America (along with former writing partner and co-creator/comedian Martin Mull), followed by a short-lived TV spinoff of Fast Times at Ridgemont High, an HBO movie with Anthony Edwards (Hometown Boy Makes Good), and scripts for movies and TV pilots that never left the launching pad.
“By the early 1990s,” writes Rucker, “I had no career. I was just another schmuck in Hollywood, looking for any low-level assignment to pay the rent.” With self-deprecating humor, Rucker relates how he occupied “a marginal niche in the Dream Factory,” churning out TV tributes to shows like The Brady Bunch and All My Children, and writing for awards shows and talk shows that Rucker calls “the TV version of skywriting.”
Rucker writes with funny yet painful candor about his Hollywood pitfalls, but in a chapter sarcastically titled “Immobility as a Career Move,” he charts a course of post-paralysis recovery that ultimately leads (courtesy of college classmate David Chase, creator of The Sopranos) to writing three non-fiction humor books inspired by the phenomenally successful HBO series. One of these, The Sopranos Family Cookbook, was number one on The New York Times bestseller list.
Rucker has kept busy since then with numerous writing projects, including the Emmy-nominated documentary Christopher Reeve: A Celebration of Hope, which furthered his awareness of disability issues. As co-chairman of the Writers with Disabilities Committee at the Writer’s Guild of America, Rucker joined a group of other writers with disabilities in the picket lines of the recent Hollywood writer’s strike, and now feels “a long way from where I started” in terms of relating with people with disabilities. He’s now a card-carrying member of the club he never wanted to join, and The Best Seat has enlightened many of Rucker’s show-biz friends, some of whom were largely unaware of Rucker’s personal and professional crises.
For the brilliant satirist Harry Shearer (who met Rucker while working on The History of White People in America), Rucker’s paralysis was “a scary reminder of the random ways in which life can smack you.”
Responding to questions via e-mail, Shearer candidly writes that “reading Allen’s book made me realize that I’d fallen for his public act. It changed my perception of Allen, because his ‘hey guys, I see the humor in all this’ façade was so very convincing, if, on reflection, a bit improbable. I knew his comedy mind, but I didn’t know much about the rest of him. I had no grasp of Allen’s pre-paralysis sense of drift and desperation, which he had also kept private. We worked on another project some years after
That anger still lingers, and perhaps Rucker will never fully accept his paralysis. But as his disability experience gains depth, Rucker has grown increasingly active in the disability community, which can only benefit from his talents. This includes a 2007 trip to Qatar for an international disability conference, a recent visit to disabled Iraq war vets at Walter Reed Army Medical Center, regular contributions to Ability magazine, and ongoing disability activism aimed at discrimination in Hollywood.
On this latter point, Rucker says, “A lot of it has to do with the nature of Hollywood, which is all about cliques and friendships. People with disabilities don’t get into the right social groups, and it has more to do with social habits than any kind of deep-seated neglect. But if you look at shows like Curb Your Enthusiasm and Extras, you see that the smartest guys know what’s going on with regard to disability. If you project ahead, you can see things shifting to the mainstream. It’s a slow process, but I’m optimistic about the way things are moving forward.”
When Rucker notes that two recent disability-related sitcom pilots were produced in Hollywood (one by the disability-friendly Farrelly brothers, the other an American version of the BBC series I’m With Stupid), he happily reports that both shows were rejected “not because of any anti-disability sentiment, but for the same old reasons” of quality, timing, and network priorities.
In other words, it’s only a matter of time before “paralyzed for life” becomes a laughing matter after all. And won’t that be something to see?
Excerpted from Allen Rucker’s chapter, “Cripple Dos and Don’ts” in The Best Seat in the House, by permission of HarperCollins Publishers, with minimal editing for contextual calarity.
Having outgrown the caring paralytic nursery of Cedars-Sinai and now venturing ever farther from my home base into the world at large, I felt as if I were back in Mrs. Wright’s fifth-grade class, trying to learn the intricacies of how to present myself. I had all the emotional maturity of a fifth-grader — I was shy, scared, and deathly afraid of doing or saying something colossally stupid. I needed to know the basics, the adult equivalent of how to make small talk with the mother of a girl I had a crush on. “Good afternoon, Mrs. Anderson, that is an awfully pretty dress you’re wearing,” I came to find out, would get you a lot farther than “Hi, toots, where’s that trashy daughter of yours?” As unschooled as a 10-year-old Romeo, I really didn’t know how to be a paralytic, how to behave in public so that people wouldn’t treat me like their grandfather or walk away mumbling, “Jeez, what a bitter, angry, sad person he is!” You don’t want the coddling, you don’t want the confrontation. You just want to make a good impression, as you did with Veronica’s mom, assuming your hair was combed, your shirttail was tucked in, and you didn’t refer to the size of her breasts.
There were educational films on how to deal with a school bully, who was, after all, just a lonely kid looking for attention. In the fifth grade of paralysis, hateful bullies are a rarity, at least where I live. Friendly bullies, the overly kind types mentioned earlier, were the ones freaking me out. Along with the people who just flat-out ignore you, these were the segment of society toward whom I had to learn the proper behavior.
Take the common experience of not being seen, for instance, because you are forever 54 inches tall or, if you slump, 52 inches. There is a right way and a wrong way of dealing with, say, a self-absorbed, aisle-blocking chatterbox at a crowded party. The wrong way would be to say, with a certain snap in your voice, “Could you get the hell out of my way, please?” That would only peg you as the belligerent disabled guy who no one will ever invite back to their party. The right way is a nonthreatening tap on the shoulder while you say, “Excuse me, sir,” and keeping to yourself the thought, “What an insufferable prick.” The person will smile the kind of smile he reserves for old ladies and homeless guys with tin cups and politely step aside. You then give a little thank-you wave and go on your way.
See? It’s simple when you know the rules.
Let’s face it: Proper wheelchair etiquette demands fresh thinking in the area of social problem solving and, in some cases, crisis management. And often you don’t see the problem until it is right in your face. At the same party where the blowhard blocks your path, for instance, your host will worry that people will trip over you, as they will, repeatedly, forcing the host to work hard to find just the right spot for you to park so that “you can see everybody.” That spot will probably be in the corner, far away from the foot traffic and the fully stocked bar … “the best seat in the house.” The host will then leave to mingle. Everyone is mingling. Parties equal mingling. Mingling in a wheelchair is impossible in most homes and apartments. Remember the famous elbow-to-elbow party scene in Breakfast at Tiffany’s? A person in a wheelchair in that madhouse would have been crushed like an errant bonbon.
So you’re parked, you’re drinking, you’re smiling and waving, hoping someone you know will wander over to chat. But they rarely do, even your closest friends. First you’re hard to see behind the potted plant and the 12 guests standing in front of it; and, second, they’re all mingling! Mingling means maintaining standing eye contact with the other standing guests when you’re not moving from room to room, looking to make more eye contact with more standing guests. The seated guest in the corner is completely out of everyone’s line of sight. You’re like the little kid tugging on his papa’s jacket, saying, “Hey, talk to me, talk to me!”
You have no choice but to wait, nursing that watery Scotch right down to the last chip of ice. There’s not a chance in hell of getting to the bar for another. Finally, someone sits down who knows no one at the party, including you. This person invariably loves to talk about chronic illness, the Canadian health care system, the restorative power of prayer, or all three. He or she figures that you, in your impaired condition, know about all these topics and will love to trade “war stories.” Soon you’re either diagnosing your new friend’s mother’s pesky diverticulitis or fending off signing up for their Prayer-a-Day phone service. There is no way that you can gracefully slide away on spotting “my very oldest friend” coming in the door. Graceful exits and wheelchairs don’t mix. You’re stuck, dude. Either you join in the discussion of the diseases of man or you feign narcolepsy and nod off, which is extremely rude and rarely convincing. What to do?
A wheelchair counterpart of Miss Manners would offer you three choices. One, ask the person to get you another drink, and while he or she is gone, locate the host and repark in another room. Two, introduce this medical magpie to someone who appears to have just been sick or to be getting sick and hope they’ll hit it off and wander off together in search of vitamin C. Three, announce that you’re leaving the party. You immediately head for the door, scraping shins and damaging toes along the way, and if no one stops to talk to you before you get to the exit, you’re forced to go home, hours early and with hardly a buzz. Since you’ve yet to learn to drive on your own with hand controls, you have to drag your spouse along as your chauffeur, and she was having the best time she’s had since you became paralyzed. You then have to fake a severe gastric problem to trump her disappointment.
You go to bed, depressed, promising yourself that in the future you will limit your social outings to grocery shopping or small sit-down dinner parties with non-hypochondriacs.