“So, what does Oprah smell like?”
People ask me this question all the time, because in the fall of 2010 I got to sit across from Oprah Winfrey for twenty minutes. It was during the second-to-last episode of Your OWN Show as part of a press junket challenge where the final three contestants were interviewed by TV Guide and Entertainment Tonight, and then at the end were surprised by the queen herself for a one-on-one pleasant chat/most important job interview of our lives. The only difference between me and the other two contestants vying for their own shows was that I was not surprised. When Oprah came up behind me, tapped me on the shoulder, and said warmly, “Hey, fancy meeting you here!” my response was a casual and generally muppety, “Hellooo! I was expecting you!” I’d put two and two together that this was how the day was going to end as soon as I saw that producers who normally wore jeans and an eternal five o’clock shadow were now clean-shaven, wearing sport coats, and whispering about somebody with the code name “Big Bird.”
Big Bird and I hit it off instantly, probably because I didn’t lean in to sniff her wrist as soon as we met. She asked me a question I’d gotten used to answering over the past couple of months since my audition video had gone viral.
“When did you realize that you were different?”
“Well, I knew I was in a wheelchair, obviously,” I quipped. “They didn’t shield that from me!”
Oprah laughed, but the truth is that I’d lived with CP my entire life and I’d rarely had to articulate my feelings about it—that is, until I was inadvertently thrust into the role of advocate and spokesperson for everyone with a physical disability.
I’d wanted to be famous for as long as I could remember. First, I thought I’d be an actor. Growing up in the early ’90s gave me great hope that the advent of CGI would one day allow me to play the action hero Bruce Willis/Harrison Ford-type roles, with a pair of fully functioning running and jumping legs inserted during post-production.
When I was five years old I auditioned for the role of Tiny Tim in A Christmas Carol. Seeing as I was the only applicant who was both tiny and crippled, I thought I was a shoe-in for the part, but I didn’t even get a callback. Undeterred, I continued to audition for school plays and musicals with zero success. I chalked up my lackluster career to a lack of mobility until college, when I realized the truth—I’m just a really, really shitty actor. The only two characters I can play convincingly are myself and a dumber and sweeter version of myself. So sometime in early adulthood, I consciously stopped attempting to act. I decided instead to hone my skills as an on-camera personality rather than holding out for computer-generated movie stardom. If I was gonna make it in entertainment, I was going to have to do it on the virtue of my charisma alone. I just had to find my voice and my angle to break in. I knew that cerebral palsy would probably hinder my leading man status, but I’d be lying if I didn’t also say I recognized that it set me apart.
When I was filming my audition video, I checked my friend Aaron’s opening frame and gave him a direction I would normally avoid: “Go wider. They’ve gotta see the wheelchair right away.” I knew it would be off-putting to just see a guy with a lazy eye flailing his arms around like E.T. fleeing the CIA. But my instincts told me that if I showed the wheelchair and then went straight for the funny, I’d be more relatable than if I tried to hide it, and if I did this right, then by the end of the video my electric wheelchair and erratic movement would just be background noise.
Over the years, I learned that in my career, unlike in life, sometimes my wheelchair is its own automatic door opener. I was able to win the OWN competition by applying one simple principle: be funny, and admit you suck before anyone else can call you out on it. In other words, make the narrative of your failure a comedy.
I knew I hit the mark when John Mayer posted a vlog about me on his blog, saying that while watching my video, “the chair simply disappears,” which means that to the singer of “Your Body Is a Wonderland,” my body was not the focus, or, if taken literally, it means I can levitate. Both things are pretty cool. John Mayer even made good on a promise to write the theme song for Rollin’ with Zach and posed with me for goofy pictures backstage at a concert in Buffalo. But the storm of media attention surrounding my video brought with it some things that were far less comfortable than having a rock star sit on my lap. I was given a title I wasn’t prepared to own: Disabled Celebrity.
I think we can all agree that Peter Dinklage is the best (technically) disabled person there is. When I was a kid, I didn’t have any dwarves to look up to, let alone any role models in wheelchairs. When people ask me who my heroes are, I never know how to answer that question because all the people I admired growing up were comedians and filmmakers and none of them had physical challenges. And though as a six-year-old in a tiny red wheelchair I could see virtue in FDR’s New Deal, Roosevelt’s reported womanizing barred him from idol status in my mind.
Today the landscape has changed. People with Down syndrome star in movies, pop stars pretending to be in wheelchairs are on sitcoms, and, for the first time, people kinda maybe know what cerebral palsy is. Josh Blue won Last Comic Standing, and RJ Mitte became a household name by being the worst character on one of the best shows of all time. People with disabilities are more mainstream than ever. But there’s still one big problem that I see. Usually, the disability still comes first.
Even on brilliant shows like Breaking Bad, where smaller ancillary characters are given emotional scenes and complex arcs, the guy with CP is used primarily as a device to make Walter White more sympathetic. Isn’t this drug kingpin’s life difficult? He has a son with a disability! RJ Mitte might be a good actor, but he’s given absolutely nothing to do besides whine and eat cereal. They only show his parents reacting to the prejudices he faces and they never give us any story lines about how he actually goes through life. Where are the episodes of Breaking Bad where Walt Jr. gets drunk at prom, or where he gets caught smoking pot with friends or masturbating into a meth beaker? So many missed opportunities to flesh this kid out! The reason we never see what he does or how he feels about anything is because characters with disabilities on television aren’t really portrayed as people. They’re just around to make you feel either good or bad by virtue of how other characters in the show respond to them.
In 2008, when a show I was doing at the University of Texas called The Wingmen started getting some attention, a Hollywood agent sent me a script that he thought I’d be perfect for. It was a network sitcom about a crappy after-school chorus called Glee. To get me the audition, the agent had enthusiastically lied, “You need a guy in a wheelchair who’s a great singer? I got ’im!” I may have looked the part, but I can carry a tune about as well as I can carry an unborn baby. I was a horrible actor, but nevertheless, I put myself on tape reading lines and singing a rousingly pitchy rendition of Bruce Springsteen’s “Dancing in the Dark.” In the script, the character of Arty is locked in a porta-potty by cruel football players, only to be rescued by Finn, the quarterback with a heart of gold. Once again, the guy in the wheelchair is the helpless one. In this sitcom universe, the majority of the world is populated by prejudiced, narrow-minded jocks who trap cripples in toilets, and the one person who would not do that is the best person who has ever lived. I don’t know if that show ever went anywhere, but I didn’t get the role. It didn’t resonate with me.
When Oprah Winfrey asked me, “What do you think the biggest misconception about people with disabilities is?” my answer was, “That people think they’re helpless and that their personalities are defined by their disabilities. . . . Get to know the person; the chair is incidental.” Unfortunately, more often than not, the entertainment industry gets it backward.
When my Oprah audition went viral, I was given the chance to finally share my perspective on what it meant to actually live with cerebral palsy. People with disabilities are given a platform so rarely that as soon as I had the chance to speak, it was assumed that I would and could be the voice for everyone with any physical disability—paralysis, muscular dystrophy, whatever it was that the elephant man had, and the anomaly that caused Bill Murray to relive the same twenty-four hours over and over in Groundhog Day.
When I spoke about my own life and how humor helped me face down discrimination and other challenges, most people were very receptive to my story. Others were adamant that in order for me to be seen as an individual, I needed to be on message, reciting a rigidly scripted, politically correct monologue every time a journalist asked me about my experience with CP. I had apparently gotten my own life wrong.
That week when I became a household name overnight, I was getting about a hundred calls a day because it hadn’t occurred to me to take down a promo reel on my YouTube channel that ended with my personal phone number. Most of the calls were from fans—fathers whose children were disabled and were moved to tears by my message of hope, shrieking teenage girls, even other OWN show contestants who called to wish me luck and give me advice.
There was one phone call in particular that made me super-stoked that my phone number was public knowledge.
“Hey Zach, this is Stephen Colbert. I heard you might be interested in doing a buddy cop movie. The writers and I had this idea to shoot a trailer where you would play a character called Rollin’ Thunder.” Somehow, Stephen had seen the Reddit AMA where I mentioned that he would be my ideal partner in an action movie.
“That’s awesome!” I exclaimed, trying to wrap my head around the fact that I was talking to one of my idols. “We could put a sidecar on my wheelchair that you could ride in.” See? Even with Stephen Colbert, I was still angling to be that leading man. We never got to film it, but my friend Kevin Scarborough did the most amazing concept poster. So, Stephen, if you’re reading this, I’m still totally onboard.
My phone just kept ringing, which was overwhelming and exhausting, but I was happy to talk with almost everyone. My work was finally making a positive impact. But amid all the well wishes and positivity, there were also bizarre calls that were tinged with resentment and slightly creepy vibes I couldn’t place.
“Are you the guy I spoke with a year ago about my idea for a travel show for people with disabilities? I think we’ve had this conversation before . . .” a woman from Maryland accused. Her tone was very menacing. She kept me on the phone for an hour, grilling me, as though she were recording the call and trying to get a confession out of me. It was unsettling, to say the least.
There were also chats that started off friendly and then quickly revealed another agenda.
“I absolutely love your work, and you’re very inspiring, but I was e-mailing with a friend of mine, and let me just read you what she wrote: He’s got a great attitude, but the stereotypes he’s perpetuating are undermining everything real advocates have worked for. Maybe he could get us in touch with Oprah and we could all work together on this show?”
And then there were the people who were downright furious that I had chosen to describe myself as a “wheelchair-bound lady-magnet.” “You’re not bound to your wheelchair!” they’d yell into the receiver, with all the misplaced anger of a drunk dad at a Little League game. “Your wheelchair is not part of you!” a stranger would insist.
Now, I’ll tell you what, when I travel with my wheelchair on a plane, they don’t stuff us both in cargo. I get to ride separately in economy. But on several occasions, airlines have lost my wheelchair in transit, and those unfortunate separations have taught me something.
For instance, when I was heading back to Los Angeles after meeting with New York publishers to secure the deal that would eventually become this book, my electric wheelchair made a connection in Phoenix that I missed. The next flight to LA wasn’t until the following morning, so an airport employee brought me one of those gigantic airport wheelchairs with a pole sticking out of the top of it, pushed me to what would eventually be my gate, and left me there with my bags to spend the night. At my size (a robust youth medium), I’m unable to propel myself in a manual chair that seems specially fitted for The Mountain in Game of Thrones. So I spent the night on the floor at my gate, counting ants, unable to leave my bags to crawl to the bathroom. In that moment, I was forced to recognize that while I may not be physically bound to my chair, my autonomy most certainly is. My wheelchair is like the Canada to my Quebec—I wanna be free of it, I have my own identity, but if we split up, all I’m left to do is think of weird things I could put gravy and cheese curds on. Of course, the terminology traps didn’t end at “wheelchair-bound.”
Other callers were distraught that I had chosen to describe myself as “a disabled person,” rather than their preferred “differently abled” or “a person with a disability.” I fully understand the intention behind person-first language. I agree full-heartedly with the goals of this movement. But here’s the thing: first of all, saying it my way is a full four syllables faster than “a person with a disability” and a whole lot less clunky. These are things that matter when you’re struggling to get yourself across in a fifteen-second sound bite on TV or trying to stand out to a casting agent who’s read ten thousand descriptions of ten thousand people in two weeks.
And as for the whole “differently abled” thing, do we ever talk about anybody being “differently abled” when they are extraordinary at something, or does it always imply a disadvantage? We don’t say Tiger Woods is a differently abled golfer because he’s better than anybody else in the world. I’ve never seen a poster that says: Differently Abled Cellist, Yo-Yo Ma, Live at Carnegie Hall! It just never rang true for me.
But my main problem is that with all of the emphasis placed on phrasing, I’ve found that people outside the disability community are wary of even starting a conversation with me because they’re afraid that if they use the wrong term, I’ll be profoundly offended. I never want to discourage anyone who’s genuinely interested or curious from asking an honest question. I always wanna be approachable.
Now, anyone has the right to disagree with me. You have the right to be angry, even. This is just my personal take on a much larger issue. But before you craft a differently-abled effigy in my likeness and use this book as kindling, remember— whether or not we see eye to eye on the best route, we’re all trying to get to the same place.
Learning how to stay true to yourself while some people expect you to speak for everyone has been a tightrope walk— which is very hard to do on four wheels. I never expected to be a disability advocate. I was a comedian first, a storyteller second, and probably a connoisseur of fine bathrooms third. But in that audition video I jokingly stated that “I have cerebral palsy, which I believe is the sexiest of the palsies.” The line caught on, and people with CP started adopting the title. As I was reading through YouTube comments, I was surprised to find that that little phrase was starting to change perceptions. Somebody wrote that they were out to lunch with their family and saw someone in a wheelchair who was severely disabled, and their first thought was not one of pity but of recognition, Oh, sexiest of the palsies! This guy was able to see a person in vastly different circumstances than his own and feel an instant sense of familiarity, like that person was somebody he could imagine grabbing a beer with.
One of the reasons Oprah is the best interviewer in the world is because she’s able to make whoever is sitting across from her feel like they’ve met a new best friend. When Oprah and I hugged good-bye, I left knowing that I’d made an impression, but I thought it was along the lines of Someday I’d like to have this young man over to my house and we’ll split a quesadilla! I’d felt we’d shared a moment of mutual understanding, but when I watched the episode months later, I was surprised to see that after our brief encounter, when they cut back to Oprah for commentary on our exchange, she was in tears. “Zach makes you want to be a better person, with his humor and his heart, and everything he’s had to deal with from the time he was born. I’ve never met anyone like him, and I’ve met a lot of people.”
On the one hand, that’s one of the nicest things that anybody has ever said about me, especially from a person who has interviewed so many of the world’s most extraordinary people. On the other, I couldn’t help but feel that this emotional response was at least in part due to an assumption that I had it a lot tougher than I actually did. Here was an African American woman born in 1950s Mississippi who had elevated herself to become one of the most influential and powerful voices in the world. I, on the other hand, have all the privileges afforded to every white, middle-class American male. On top of that, I have a loving family who has supported me in almost every endeavor I’ve undertaken. My single disadvantage is that I was born with cerebral palsy.
I couldn’t help that. Instead of fighting against it, I worked with everything I had in my personal arsenal: humor, intelligence, empathy, curiosity, creativity, and hotness. Funneled through all those positive traits, my wheelchair and my diagnosis became tools rather than obstacles. I apply them when they can make my work better and try to check them at the door otherwise. They get in my way sometimes, but they also pave it. So when I’m sitting across from Oprah, or anyone else, my goal is to be seen not as someone who is forced to sit down, but rather as someone who chose to stand up. To me, that’s putting the person first.
Oh, and for the record, Oprah smells lovely.
Excerpted from "If At Birth You Don't Succeed" by Zachary Dean Anner. Published by Henry Holt and Co. Copyright 2016 by Zachary Dean Anner. Reprinted with permission of the publisher. All rights reserved.