When I first heard that there were people out there who pretended to be wheelchair users (called pretenders) and even worse, people who wanted to injure themselves to become actual wheelchair users (called wannabes), I was steamed. I mean, who would want to do such a thing? Their very existence seemed to mock my very existence, like black-faced white people in minstrel shows used to mock black people. Plus, these crippled con artists are probably stealing precious disabled parking spots all over America.
Then I calmed down, got off my paralytic high horse, and tried to see this taboo weirdness from another point of view. Let’s face it: pretending to be something you aren’t is pretty endemic in America. Pamela Anderson pretends to be an actress. Donald Trump pretends to run for President. One of this country’s most hallowed literary characters, Jay Gatsby of The Great Gatsby, is a rank pretender, a Jewish bootlegger from the Midwest pretending to be a West Egg, Long Island, WASP patrician who dresses like Tom Wolfe and throws massive parties. Would it have been any more egregious if the counterfeit Gatsby had been a patrician in a wheelchair?
Self-invention — or self-delusion — is as American as Lady Gaga.
The medical literature on this wheelchair pretender form of self-invention is pretty thin, though there are whole books written on a parallel phenomenon called “factitious disorders.” A factitious disorder is when some needy soul feigns cancer to the point of starving themselves and shaving their head to look cancer stricken. Or a nurse — true story — who injects herself with live bacteria to make herself sick with life-threatening infections.
There is also something in the mental-illness lexicon called “Body Integrity Identification Disorder,” or BIID. People with BIID want to severely alter their body image, like amputating their right leg or taking a drug that will make them permanently paralyzed. I decided to focus on the pure pretenders and sidestep the self-mutilators. That seemed a level of pathology better left to the experts.
As for pretenders, they are generally seen by clinicians as having a mental disorder. In a long article in the journal Sexuality and Disability, researcher and clinical psychophysiologist Dr. Richard Bruno reviews the history of pretenders, devotees and “wannabes” and describes two pretenders. Bruno concludes that pretending is, at root, a cry for love. He describes the origin of pretending “as the pairing in childhood of a disabled person with the expression of love or sympathy by normally cold and emotionally aloof parents.” Pretenders discover very early in life,” Bruno says, that “having a disability is the only way one can be loved.”
Type in “wheelchair pretender” on Google and you’ll see right away that sex definitely has something to do with it. There are sites full of pretend ladies in wheelchairs calling themselves “paracuties” selling their photos to those who are aroused by such images; the arousees, technically, are called “devotees.” There are mega-sites leading you to other sites devoted to pretenders or devotees (www.devguild.org) and a Facebook gathering place for the like-minded. They’re clearly out there. But who are they and why do they want to pretend to be me?
Fellow NM contributor Jeff Shannon gave me a starting point of understanding, a little-known (to me) 2008 independent film called Quid Pro Quo. Written and directed by Carlos Brooks and produced by the highly-regarded team of Sarah Pillsbury and Midge Sanford (River’s Edge, And the Band Played On), it’s the story of a guy paralyzed by a car accident, played by Nick Stahl, who meets up with a pretender, played by Vera Farmiga, later an Oscar nominee for the George Clooney film, Up in the Air. If pretenders are looking for a poster woman to show their subculture in a glowing light, Vera Farmiga would be an excellent pick. She’s beautiful, clever, cagey and utterly believable. She is a devotee’s wet dream.
Her character, Fiona, tells a great story from childhood that underscores her own fascination with wheelchairs. As a little girl, she says, she thought about aliens coming down to earth and seeing people in wheelchairs. “Those must be the kings and queens,” the aliens would conclude, because “they get to sit all the time.”
The first time Fiona shows the paralyzed guy, Isaac Knott, her favorite leg braces, part of her arsenal of pretend tech, she says, “This is a deep secret. I’ve never shown this to anyone.” Then they make mad, passionate love. Later, when asked why she wants to be paralyzed, she answers, “I’m already paralyzed. I’m stuck in a walking person’s body.” Where have you heard that before? Let’s see, transsexuals stuck in the wrong gender, skinny people who want to be fat, fat people who want to be skinny, Broadway dreamers stuck in Iowa, etc. The first time Fiona goes out in public in her wheelchair, she uses a classic gay reference: “I have decided to come out.” With Fiona it is about sex, for sure, but it’s also about something much deeper.
The movie takes a decidedly strange turn at the end [SPOILER ALERT!] where it’s revealed that Isaac Knott (as some read, “‘I Sick Not”), through the discovery of some sturdy shoes, really isn’t paralyzed after all, just a victim of an hysterical paralysis, and that Fiona caused the wreck 15 years before that killed his parents, thus explaining her need to seem paralyzed. She doesn’t abandon her quest, though; she just rolls off into the sunset, perhaps making good on her darker wannabe urges and orchestrating a broken back or something.
Vera Farmiga’s performance as a pretender does not make you think of people feigning cancer or injecting themselves with toxins. She’s got a good job, a fetching personality, and a lust for life that doesn’t seem the least bit mental. If the medical view is that pretending is a sickness to be cured, much as most solid citizens used to think of homosexuality, Fiona belies the diagnosis. She sees it more as a deep-seated urge, neither a lifestyle choice nor a perversion. Maybe it’s a bit of both. I don’t know, but only by making contact with an actual, flesh-and-blood pretender, I decided, would I get beyond either simplistic explanation.
So I put out a blast on those Internet sites mentioned above and got incredibly lucky. A veteran pretender with her own blog, www.paracathy.com, wrote back and offered to answer all my questions, anonymously, of course. I asked away and she didn’t pull back. [What follows is a self-portrait of a pretender and a frank and articulate one at that.]
Paracathy, aka Cathy, describes herself as “middle-class, urban,” and gay. “I live in a modest-sized apartment with my girlfriend in a not-too-awful part of town,” she says, and she holds down “a pretty run-of-the-mill customer service job.” The next time you call Best Buy to complain about that GPS that doesn’t work, the young lady listening to your whining could be Cathy.
With the complete complicity of her companion, Cathy has lived in her wheelchair full-time for the last three years. Her earliest attraction to what she calls a fetish came while watching the Jerry Lewis telethon with her grandmother. She saw a girl her own age, 8 or 9, “wearing a pretty, frilly dress and full metal leg braces,” and she was mesmerized to the point that “I just wanted to be her, or be like her.” A couple of years later, she was alone in a basement playing with an old push wheelchair out of earshot of Granny, and something happened. Sparing us the details, she “ended up having my first orgasm sitting in a wheelchair in my grandmother’s basement.” And her course was set.
Moving out on her own at 20, she saved up for two years to purchase a rigid-framed basic institutional chair. Although her girlfriend-to-be wasn’t necessarily into chicks in chairs, she quickly accepted Cathy’s fetish, having a few of her own, and they set up house. Then the two of them were in a serious car wreck, one that turned the car into a pretzel but left both women relatively unscathed. But, as fate would have it, says Cathy, “it gave me a vehicle to allow me to live this way full time.” The “official story” is that she suffered a back injury so painful that she can’t stand or walk more than a few seconds. She had the perfect cover and everyone bought it — the folks back home, her co-workers in customer service, and the nice guy at the coffee shop who rearranges the tables so she can slide right in.
One of the greatest surprises, she says, is that “nobody questions me about my wheelchair. It’s like they don’t even want to know.” Afraid she’d blow her cover and get caught, “what I really found out was that able-bodied people just don’t bother, don’t pay attention, and even avoid the topic all together.”
Back to the big question: really, why would you want to live your life in a wheelchair? Cathy ably sums it up, at least from her perspective:
“As for me, being in my wheelchair, it’s far deeper than sexual — I only feel ‘complete’ or ‘right’ when I’m in my chair. It’s completely psychological; when I’m in my wheelchair, I am more self-confident, more outgoing, more able to focus, and I feel much more attractive. I’m much more open to meeting new people, much more fun in public settings like parties or clubs. I’m simply happier.”
Cathy knows she’s not alone in her deception. Her website gets an average of 12,000-15,000 page views a month, she says, indicative of a decent population that is at least interested. Other pretenders, she says, run the gamut from “a very happy family man” to “a couple of pretenders who are alone and looking for a partner” to “a wannabe who is a little out there and can be disturbing to chat with.” It’s such a social abnormality, she figures, most practitioners stay deep in hiding, even with the anonymity of the Internet. “The pretender/wannabe subculture,” she says, “is the most secretive group I’ve ever known.”
She agrees that real wheelchair users are often timid, shy and self-conscious. “For me,” she says, “it’s a little ironic because I’m timid and shy until I get in my wheelchair, then I’m very open and friendly and outspoken.” Which is why she liked Quid Pro Quo so much. Vera/Fiona was the same way. Or in Cathy’s words, “I thought Vera was really hot in her wheelchair!”
This particular pretender is a case study of one and shouldn’t be held up as indicative of all pretenders and their brethren in fakery. Still, her life and attitude beg the inevitable question: Is this sick? Is such a condition only a gateway to clearly off-the-chart behavior like asking a doctor to whack off your left arm? Is Cathy, like most drug takers and closet alcoholics, simply in denial of her “disease”? Should we stout-hearted real cripples be exposing these people who live in this perverted dream world where they never experience a problem wound or a staph infection or the irreversible, all-too-real experience of being genuinely impaired? “Hey, Cathy, try a UTI. That’s when the fun really starts!”
Think what you wish — however far outside the culture of “normal” they may be, pretenders are out there, and we all might as well try to learn something from them. Lesson number 1, at least for me: Learn to love yourself, no matter how wounded you might think you are, mentally or physically. “Embrace it!” as Cathy suggests, “it’s you! It’s who you are!” In a reversal of Cathy the pretend para, pretend you are not paralyzed and maybe the bad feelings you associate with it will not keep cropping up in conversation.
As for her own situation, I’ll let my anonymous pen pal have the last word. After all, it’s her life. I’m just the rubbernecker staring in from the outside:
“Pretenders don’t hurt anyone, as long as they’re not trying to scam government benefits or taking services away from people who actually need them. We have a ‘fetish,’ an ‘interest,’ or even a ‘disorder’ — call it what you will, we’re just living our lives in the only way we really can, for the most part. For me, I could bury this deep in my subconscious and live a miserable life on two legs, or I can embrace my soul and live happy and content, and in a wheelchair. That doesn’t make a real wheelchair user any less ‘legitimate.’ It doesn’t diminish you in any way. It’s just me, sitting in a wheelchair, living my life.”