Fancy Walker

If you have the pleasure of being even slightly unconventional looking, whether it be through aesthetics or genetics, you’re very familiar with meeting the gaze of a small child. Tiny pupils locking in on their prey before an oncoming observational verbal assault. Like little Jerry Seinfelds in Light-Up Sketchers (a horrifying thought). Ready to make or break your already fragile ego. The seconds leading up to that whirlwind of a word vomit are very special. In fact, they are almost exhilarating. You see them, they see you, their parents see them seeing you. It’s one of my favorite recurring moments as someone who has been disabled for the last thirty-four years. It’s a moment that can be both incredibly pure and absolutely unhinged. It’s why I chose it as my first subject to write about and where the name of this blog derives from.

   In my daily life, I take long deep breaths before venturing out of the house. It’s not a matter of if I’ll have a strange encounter but rather when… and who with… and what will they say and why (actually not why–I know why, you know why and he who shall not be named knows why… that’s right, I’m talking to you John Stamos). Whether I like it or not (I don’t) I have the power to evoke emotions simply by rolling along in my wheelchair. From awe to guffaw and everything in between, I am a mood magnet. A conversational conductor. A wrangler of the ridiculous and obscene. Need I go on? A vessel for–I’ll stop. Without my consent I know every single neighbor of mine within a mile radius, and I know everything they think about me: 

   There is ‘SUV Guy’, who I see every morning while walking my senior chihuahua pug. He sits in his SUV, with his cup of coffee, all morning long. He is there when I walk down the street toward the train tracks and he is there when I walk back up the street toward my scaffolding covered humble abode. I presume he is waiting for the street sweepers to come through so he can move and then quickly repark so as to not lose his spot. I have never gotten to witness that magical moment firsthand, so it’s just an educated guess. Perhaps he just really loves his SUV. It is a very nice SUV. He likes to yell positive things to me, “Keep going buddy!” and “You’re doing it!” are in heavy rotation. Getting daily affirmations shouted at you doesn’t seem like such a bad thing but it gets old, real fast. 

   There is also the self-titled ‘Fitness Coach’, who maintains the little garden outside his brownstone that he shares with several other tenants. He likes to compliment my physique. I have decent biceps as a byproduct of pushing my own weight for years in a wheelchair. I also have a decent level of confidence in myself which, again, I would presume he doesn’t think I have. And that he believes his daily pep talks give me a boost in morale. You would need to be a fitness coach to exercise this kind of ableist thought process. Every time he compliments the “big guns” he reminds me that he’s a fitness coach and that’s why he is complimenting me. The constant need to clarify shows he has an awareness that it could be perceived as weird or inappropriate or uncomfortable, yet that awareness certainly doesn’t extend to… stopping himself from still doing it. I truly love people. 

   You may be thinking “So far these examples sound like very positive, light, somewhat joyful things.” You get praised daily and you’re upset about it? Stop complaining. And all I have to say to that kind of response would be… no. I won’t stop complaining and you can’t make me. Honorable mentions can also go to the various people who shout “ARE YOU OKAY?” in my direction (I’m not). In the words of John Mulaney,”It’s like I’m the Mayor of nothing” and frankly? It’s exhausting. But, I continue on because I literally have no other choice. I mean I do. We all do. But how about we save that discussion for a later time? One thing that does keep me going is my encounters with children: 

   On one particular day back in 2011, I took some wobbly steps into a Target Superstore in Canyon Country, California. Canyon Country–the dustier, edgier, neighboring city to the prim, proper and polished city of Santa Clarita, where the moms sell weed and the cannibals roam free. I walked the aisles of this particular Target quite often during these days. Sometimes it was as a civilian and other times I donned my red shirt and khakis, as a proud Target Team Member (Oh did I beam with such pride…). It was here, standing with my cane, looking around aimlessly. Bedded between the freezer section of various frozen veggies and rows of beer, from every brand you could imagine–yes that’s right, from Budweiser all the way to Bud Light. It was here in this Target where I’d met the gaze of a small boy.

   He was no older than four, sitting in the front of his mom’s shopping cart, the captain of his ship. He was ready to set sail and he had his sights set on me. He looked at me curiously (as they all do), then toward his mom, then back to me, then back to his mom. The hamster wheel in his head turning. It only took a second for his mom to realize what was happening. Her eyes raised to mine, then back to her wild card child. We both waited with bated breath. What would he say? How would he say it? Would she have to apologize profusely? She already had a knee-jerk wince on her face for fear her knee-high son would soon be a jerk. 

   Finally, his mouth opened, “Mom, why does that man walk so fancy?” he whispered in the way that a child whispers… which is to say he didn’t whisper at all. Not one bit. It came out so casual yet confident that it took me by surprise. It wasn’t “Does he walk fancy?” or “Is he walking fancy?” in his eyes my fancy walking was objectively true.  

   But WHY did I walk so fancy? Why do I walk the way that I do? If you are someone who has stumbled upon this blog (much like I stumbled into many Targets) without previous knowledge of who I am, you may be asking that same question. So, let’s get into it. I was born as so many are, in a womb, over the course of nine months, you know the basics, Yada-Yada. But, the not so basics unfolded as such: 

   I was born a twin, we were born HIV positive, our HIV affected our neurological systems causing a form of cerebral palsy and my twin brother, John, passed away at 16 months. I was given until four years old to live, if I did, I’d never walk. I ended up living (surprise!) and I went from a wheelchair to a walker, walker to crutches, and crutches to a cane. When I’m on my cane I strut around the world like a weeble that wobbles and does fall down. These days though I toggle between all my mobility aids based on how I feel on any given day (like a Ken doll, accessories included). My t-cells are in a normal range, viral load is zero so my HIV is undetectable. Undetectable equals Untransmitable for those of you in the know. Meaning that for all it’s worth, I’m just like anyone else. I’m happy and healthy and filled with just your daily amount of anxiety. Yada-Yada. 

   So, back in Target, we stood there for a moment, without words. The mother with her curious child and me with my frozen broccoli florets and Corona. We pondered the fanciness of my feet through furrowed brows and laughter. Of all the things I’ve ever been called “Fancy Walker” was certainly not on the list, until now. I guess it made sense, if I was standing with my left leg crossed over my right foot, hand propped on my cane, you could draw comparisons to me and Mr. Peanut. Mr. Peanut is certainly high on the fancy scale–definitely among the salty snack gang. Don’t even come at me Chester Cheeto–-you degenerate scoundrel. Pedal your cocaine cheeto dust somewhere else. 

   So how does one respond to being called a Fancy Walker? How does one respond in general when a child points out the thing you’ve dealt with your whole life? Like me with my disability. Over the years I’ve heard everything under the sun from children. Things like:

  “Are you a Transformer?” 
  “Can I have your stick?” (Cane)
  “Why does he get to roll around but I don’t?”
  “Are you an X-Men?” 
 “You look like a spider” (For when I’m dual-wielding my crutches). 
  “I wish my legs didn’t work!” 
“My dad walks like you when he drinks” (Followed by the face of a humiliated mother…)
  “Did you get into a fight?”
  “Can I have your chair?” (Kids really want to steal your shit). 

   So on and so forth, all the way to the very matter of fact “What’s that?” which can really set off the existential peril. I look in the mirror everyday and wonder “What’s that?” myself, kid. But, more often than not, they compare me to something far cooler than I could ever hope to be. Transformers, X-Men, Spiders and Fancy Walkers are more awesome than an occasionally working actor who writes because he has too many thoughts and even more time. 

   So what’s my response? It’s a delicate moment, a chance for awareness, if you are the type to want to bring awareness. It’s also a chance to completely traumatize, if you are the type to want to completely traumatize:

  “I forgot to eat my vegetables” or “I didn’t color inside the lines” or “I didn’t listen to my mom about brushing my teeth” are certainly options to widen their little eyes and cause their parents to pull them away in disgust. I’m not here to judge what you decide to do, merely stating the options you have in front of you. 

   For me, I’ve learned that simplicity is key. The biggest mistake I made in the early days is believing their question deserves an answer so eloquent, so well thought out, so life changing. An answer worthy of a power-point that leaves them pondering the very fabric of society’s inequality and injustice. When in reality, all their question deserves is… an answer. Any answer. Preferably short and sweet so their parents can go back to filling their target shopping cart with the $700 food haul that will be gone in less than a week. 

   So is this really a moment for me to explain that my father’s infidelity led to a transmission of a deadly virus that wreaked havoc on the gray matter of my brain? And then said virus caused me to grow up struggling physically, in fear mentally, and isolated emotionally? And due to social stigmas, I had to hide my status and sharpen my comedic timing in order to be accepted, which resulted in a career as an entertainer and eventually writing long-winded blogs cataloging my experiences? Perhaps not. Maybe “I was born with a disability and this helps me walk / not be in so much pain” will do just fine. And it does. 

   More often than not they just nod, ask their parents if they can get a candy bar and off they go. And then I regroup and grab my own candy bar before venturing into whatever the next encounter will be. These amusing moments occur far less than my interactions with adults, but they are exactly what keep me from losing my god-forsaken mind when having to interact with.. well, adults.

   Especially adults whose presence extends beyond being cheerleaders to the friendly, neighborhood cripple. Like literally inserting their presence by grabbing my wheelchair and rolling me down the street in an effort to “help” me. Help me from what exactly? I always have to wonder. I don’t think I look particularly helpless. I take good care of myself. I dress fairly nice, I even color coordinate with my bright yellow wheelchair. I walk my dog four times a day. I recycle, I pay my taxes, I feed my three senior cats. Yes, that’s four senior pets if you’re keeping count. Sometimes I audition for roles as an actor and those auditions sometimes even turn into work. I enjoy lovely date nights with my wife where we both get to experience ableism (she is also disabled and what we have to deal with as a couple is an entirely separate blog in itself). All in all, I’m a very non-helpless kind of guy. But the existence of my wheelchair, my cane or my crutches–the existence of any mobility aid at all means I am, in their eyes, helpless. I am unable. I am an obstacle of my own design. I am a reality roadblock. Need I go on? I am a sore for sighted eyes–I’ll stop. It’s not lost on me that for many people, I am a sidequest in their game of good deeds:

   It was sometime in the summer of 2012. I remember it was summer cause my shoes were burning as they dragged on the pavement. A small hole just started to form around where my big toe would be, revealing a little piece of ripped white sock. Which revealed a little piece of ripped white skin. Which revealed a little piece of ripped red blood. Around this time I’d go through shoes monthly. Ruining every pair with great ease. I was walking along on my cane, heading to my job in Hollywood, which was teaching at a film school that I had just graduated from six months prior, so you know it was a credible place. I was turning the corner of Hollywood & Vine and I spotted a dingy, off white, Toyota Corolla abruptly pull into a red zone behind me. 

   The man driving the vehicle raced over to me on foot, though trust me, he need not rush, he would for sure catch up to me. He lightly tapped me on the shoulder “Hey, I happened to see you on Hollywood blvd and I had to stop to say hello”. He said, staring me down with the most unnervingly shiny smile. 

   Did you have to stop? Did you absolutely really just have to stop? I wanted to say, but instead I said something more eloquently succinct like “Oh.” 

   He continued on “I would love to pray for you to be healed, do you mind if I pray for you?” Before I could even rebuke he had his hands pressed on my leg, his eyes closed and he began muttering through a prayer.  I really wish I could go into great detail about the contents of this prayer and its specific verbiage. But I simply can’t. I can’t because my mind immediately went blank as I stared at his hand, firmly pressed against me, clawing my upper thigh. An unknowable amount of time passed and he finally released his grip. He looked me up and down and eventually his eyes met mine with a hopeful kind of look, as he plainly said “Well?…” There was a very long pause at this point. I had no idea but apparently this was supposed to be one of those instantaneous prayers. He seemed so ready for me to drop my cane and in a Willy Wonka like fashion just roll over, hop to my feet, wave my top hat and ta-da! But alas I was very much ta-da-less. There was no golden ticket. There was a cane but there would be no able. I couldn’t stand to see him disappointed. Need I go on? You can’t cruciFIX this–I’ll stop. 

   I stared right back at him. How dare he think he could just fix this with a snap of his fingers? How dare he stop me in the middle of MY day and thrust his beliefs upon me? I wanted to say, but instead I said “Oh. No.” again… very eloquent, very succinct. But that’s all I could think to say. Though I am constantly confronted I am simply not one for confrontation. I much rather simmer on the experience for a decade and some change and eventually get around to writing about it from the safety of my dining room nook. 

   He seemed pretty bummed out that his drive by prayer hadn’t worked but he just shrugged it off and said “I gotta jet or I’m gonna be late.” He’s gonna be late? Really? And he began to jog to his Toyota Corolla still parked in the red zone with his caution lights blinking (where was parking enforcement when you needed it?) He then stopped in his tracks, turned back to me and said “Oh, by the way, I meant to ask… what’s wrong with you?”

   I looked him straight in the eyes and said “I’m a fancy walker.”