I’m Not Answering That

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The rims of his flat top glasses were the same shape as the gold buttons on his blazer and I couldn’t stop staring at the spot where one was missing — probably forced from the fabric after working hard to tuck in his impressively large frame.

“Wheels, you’re over here,” he grumbled, waving a clipboard as he lined up the rest of the Hollywood Hopefuls.  There were kids of all sizes and skin colors, but I was the only one who earned that nickname.

Next to me, a girl in a purple polka-dot dress was talking a mile a minute. She slowed down long enough to ask if I was nervous.

“Maybe a little,” I said nonchalantly, but inside I was lit up with nerves. This was my first television audition. I had never performed anything except the Basement Theater productions my cousin and I starred in regularly.  I put on my best show–a massive hissy-fit–when my mom told me I should go to the audition, and that it would be a “good experience.” My act of defiance was only a mask covering my true anxiety.

I would voluntarily clean my room and unload the dishwasher before ever admitting I wanted to be in this commercial. The open call was looking to fill a role I played well: Kid in a Wheelchair. This character they wanted was a label I wore every day, and I knew it made me different. There was no kid like me in my class or in my Girl Scout troop. I understood that sitting in a chair meant that I stood out. But even then there were times I felt unseen. This chance to be in a commercial was an opportunity to be seen.

I tried to act confident as the spotlight sent blinding jabs of florescent light into my eyes.

Glasses Guy towered over me.  “Demonstrate what your favorite animal sounds like,” he ordered, his voice gravelly, likely from years of stale cigarettes and bad coffee. I don’t know if I was paralyzed under the strong, relentless grip of nerves or overcome by the assault of his breath hitting my nose, but I froze. Hard. The bright room went black and I forgot everything Old McDonald taught me. Do cats bark or does a dog meow? Does a duck quack or is that a cow?

One disappointing display of animal impressions, and that was it. I went home and back to my ordinary life, but not without an entertaining anecdote from the time 10-year-old me floundered at an audition for a television commercial. Everybody’s favorite ice-breaker games wouldn’t be the same without my brush with almost-but-not-quite-fame.

Now the closest I come to the lives of the rich and famous are in the made up, albeit colorful, stories between the pages of my gossip rags, each dripping with lurid scandal.  I know it’s grub, but I eat it up like the deliciously hot fodder it is. (Seriously, my living room could double as a waiting room for a dentist’s office. I freely admit a problem). Still, as I scan the pages full of sought-after stars, I don’t have to travel far outside my own life to imagine what it feels like to dodge stranger’s stares or field ridiculous questions from curious voyeurs.

My mantra has always been: I would rather people ask me questions than make assumptions about my disability and how it impacts my life. I don’t often draw a line through my willingness to be open so even I get surprised when a question crosses over to “I’m Not Answering That.”

Here are my Top 5 Favorites:

So, you dressed yourself today? I’ve never put much thought into appropriate salad bar etiquette (until this question came at me in line for some greens). I assume I’m not alone in that unless there is a Salad Bar for Dummies book I don’t know about. In that case, I’m going to “Amazon Prime” this compelling read and hand it to the next person spending more time pondering details of my daily routine then deciding on the dietary benefits of kale or spinach.

My truth is that I would rather stay in my underwear all day – clothes can be cumbersome – but since society, and HR, frowns heavily on public nudity, I must fight my urge to wear as little as possible and get dressed – with the aid of some fancy tools – before I leave my house.

To the peeking passerby who stopped mid-sesame seed sprinkle to question my appareling abilities: It was a wicked workout at times, but I did dress myself today. And I think I look pretty damn good. Enjoy that salad!

So, you go to work – like every single day?  Unless a marathon of Gilmore Girls is more appealing than a marathon of meetings (this has never happened, obviously) then yes. Yes I do.

I think most adults will admit that sometimes all this responsibility is a bummer. All we really want to do is stay home, do arts and crafts and eat macaroni and cheese. (No, that’s just me?)

Harder to admit, though, is the real truth.  No matter how severe the Case of the Monday’s or how much we loathe the incessant noise of our alarm (sometimes multiple) or the inevitable traffic jam, we like getting up every morning knowing we have places to be and things to do. The innate desire for your unique contributions to make an impact and to matter is the same for every person, disabled or not.

And usually with simple workplace accommodations – for me that’s some pretty sweet voice to text software to expedite the story interview process, and the ability to work from home a few days a week – many people with disabilities are able to hold their place in the job market.

To the older gentleman who surveyed me in my chair and asked, “But how can you do real work in that?”: I’d love to stay and chat about real vs. fake work, but I have a board meeting to attend.

So, how do you stay so fit? Health and fitness is important to me. Thankfully, the spaghetti noodles I call legs don’t stop me from being as active as possible and sweating out the stressors of each day.

I can lift weights with the best of them and I am a rock star at pushups (of the chair variety).   But for people whose heart rate responds only to the rush of friendly competition, there are plenty of adaptive team sports.

To the fellow fitness fanatic perusing a rack of workout clothes at Target: We both know the struggle is real. Even though I would rather eat an entire sleeve of Oreos for dinner and working out can feel like a chore, society has told us to keep it right and tight. And we listen.

So, are you a virgin, I mean, how is sex working?  It seems this question is no longer reserved for my Ob-Gyn.  I get it: Sex is fun. Sex is intriguing. And people (read: men who see an attractive woman and their minds start going, but they forget to close their mouths) will always be curious about it.

To the well-dressed and equally endowed man – judging by his ballsiness – who wanted to discuss details of my sex life while waiting to catch a bus downtown: Dude. It’s 7:45 in the morning – I don’t talk about sex until at least 8 am.

So, you really think you’ll find someone to marry? Lucky for me, we live in a time when most people accept that marriage doesn’t look one particular way for one particular kind of person.

I once thought I wasn’t the “marrying type,” whatever that means. I figured that I come with too much “stuff” and that no guy would be willing to take my “stuff” as his own. But it’s not true. Watching my friends and family in their relationships, I’ve learned that’s all marriage is: finding one person who is so crazy in love with you that they want to share all the “stuff” and work through it together, every day.

To Nosey Nancy who inserted herself into my future upon overhearing a retelling of my dating hits and misses: By the look of that ring on your finger, you got married. So there must be someone for everyone.

Choose Your Battles Wisely is quite applicable advice in any one of the aforementioned scenarios. In all of these small vignettes of the big picture of my life, I chose to respond with sarcasm or silence over a sour standoff. It is not cowardice, rather it is confidence in knowing I am a strong, capable woman and I do not have to prove myself to anyone. Sometimes I just laugh, shrug it off and say, “Well, it’s a show pony day!”

I am acutely aware that most people mean no harm. Their ignorance is an unfortunate slip of the tongue or a misguided attempt to connect. The blatant intrusiveness into my life comes not from malicious intent, but from misunderstanding.

We are deep in the Digital Age, and as directed by the hyper-saturated culture, much of the information we receive and collect about the world around us comes from the media, often misguided itself. It’s impossible to ignore that many of the stories told about disabilities and the people living with them are punctuated with pity or soaked in sadness. The character you root for is usually a little shy and unsure of themselves. They’re sidelined until someone shows enough mercy to bring them into the fold. People living with disabilities are often painted with broad strokes from the same brush – ill equipped for life and lacking capacity to achieve any real accomplishments. If the bar of expectation is exceeded, then it’s thanks to the aid of others and not from success of their own abilities.

My perspective of the world has always been uniquely sharp, with eyes wide open to injustice and inequality – intentional or not. What 10-year-old me observed at that commercial audition – that people with disabilities are missing from the scene – remains largely true today.

Our presence is lacking and it’s challenging for people who do not live with or around disabilities to conjure up any semblance of normalcy when thinking about what disability might look like. The truth is it looks different for every person – just like life.  People with disabilities can lead full, well-rounded lives, complete with love and, yes, sex. That fact is inadequately represented, forcing people to ask embarrassingly forward questions or create their own preconceived notions about what it means to be disabled.  It’s time to redefine disability. It’s time for disability to be seen.

I want to see real people with real disabilities in real-life roles. I want to see people with disabilities commanding conference rooms and consulting fellow doctors in a hospital trauma ward. I want to see women with disabilities negotiating a deal with clients and then coming home to negotiate bedtime with a three-year-old. I want to see people with disabilities finally find a hole in a busy schedule for dinner with their friends or date night with their love. I want to see people with disabilities living life.

Hey, Hollywood – I’m available. And ready for the red carpet. I’ve had plenty of practice saying, “I’m Not Answering That.”

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Pray

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Her doe-like eyes, alive with curiosity, watched me with innocent wonder. In sync with each move I made, her brow furrowed, little creases on her forehead growing deeper as she worked to grasp what she could clearly see but not quite understand. Carefully, she hid stolen glances behind the splat of a chair she knelt on, sinking farther into the cushion each time my stare caught hers.

The waiter came, breaking our connection for only a second before her inquisitive gaze fell back on me. Try as it might, The Mighty Grilled Cheese and its sidekick, Impressively Large Chocolate Milkshake, were powerless against this tiny spy’s strong will to solve the mystery of The Woman Trapped in the Large Machine with the Even Bigger Wheels.

It was impossible not to chuckle as I watched this bright-eyed gumshoe’s own wheels turning: “How did she get in that thing?” she asked herself. “Does it hurt?” she wondered. Big questions like “What does she need it for?” “How come I don’t have one?” and “Why isn’t she walking like me?” filled her little head.

I had all the answers and I wanted to give them to her. I held down a desire to motor over to the table she shared with her family and tell her that this is called a wheelchair and I sit in it because my legs aren’t as strong as hers. I’d ask if she likes to dance (she’s wearing neon pink ballet slippers and a glittery tutu over her jeans – it’s a pretty safe bet) and tell her I do, too. I needed her to know it’s perfectly okay to ask questions and it’s absolutely fine to wonder why people look or act differently than she does. And it’s especially important to love all our friends, even if they aren’t quite the same as us.

I settled for a toothy grin and a quick wave before returning my attention to the conversations bubbling up around my table. Taking a sip of water, I could see her face through the foot of my glass and I hoped our silent spiel was enough. I hoped I made the right kind of impression and taught an observant child a lesson in being comfortable with people and things different than what she’s used to seeing.

When I looked up again, she was out of her seat. I had been too busy picking at whatever was on my plate to notice that she had bravely walked up to me. I turned toward the little voice saying, “You’re pretty, can we pray for you?”

We. I knew then that she hadn’t been the only one watching me. Adults are just a little better at being subtle. I also knew that while I enjoyed dinner conversations with my family, this family was having their own conversations about me.

I had a nano-second to react before mom was beside me, too.

“You are stunning,” she told me. “You look just like that girl in that movie, but, oh shoot, I can’t think of her name.”

A small, nervous laugh escaped her lips and I thought maybe, just maybe she realized she should take her daughter and sit down.

Nope. That would be too easy.

“Anyway, we just came from church and I told my daughter we would not be doing our Christian duty if we didn’t pray for you.”

You mean from your seat over there or later tonight at bedtime, I thought, giving her benefit of the doubt. Oh, nope, you’re going to do it right here, right now. In the middle of a restaurant. In front of all these people. But at least I look like some famous chick?

Before I could make a beeline to the bathroom, the little one grabbed my hands. Ah, man. I was trapped. Well played, lady. Well played.

“God, we pray that you heal this beautiful woman,” she said. “Please fix what You are able and bring strength to her legs so that she can walk.” Plus something I don’t remember. But I do remember her parting words to me:

“Later when you feel comfortable I want you to try walking again. God performs miracles every day.”

Still waiting for that miracle.

I’d like to say it was, but this was not the first time a similar scenario had played out. I need more than my two hands to count the times perfect strangers approached me to offer their condolences for my “condition.” And to beg and plead with their highest power, wondering why “such a beautiful girl” was condemned to an “unfair, hard life.”  When they don’t get the answers they seek they are soothed by prayers for my salvation and healing.

I don’t know where this calling comes from or why people think it’s their charge to change me. If I ventured a guess, it’s ignorance bred from fear. It’s scary to look at things we don’t understand but we know could easily happen to ourselves or people we love. It’s uncomfortable. Well, lady on the bus or man in the grocery store, you are making me uncomfortable by putting your hands on my shoulders (or head – it’s like a bee to honey every damn time) and making an unnecessary scene. You are not God. Or a magician. Just stop.

After shaking off another delightfully awkward moment, I say a prayer of my own, for enlightenment. I pray for a day when our differences aren’t so easily seen. I pray for a day when the beauty of our souls matters more than the value of our temporary aesthetics. And I pray to let go of my own petty thoughts.

This time, though, annoyance that would be gone before I hit the parking lot was replaced by lingering disappointment. You see, most of these impromptu prayer circles are led by full grown adults already set in their ways. They’ve had time to form their opinions about the world and they’ve decided on their own how to act in it.  But this sweet, impressionable girl – no older than three – hadn’t been given that chance. Instead her mother was molding her right in front of me. And it made me sad. She was learning that differences are wrong and that they need to be fixed.

I can’t help but wonder, is this where it starts? Is this the moment when the distance and disparity is created? Is this when the seed of intolerance is planted?

The praying woman had an opportunity. She could have set an example for her child and quietly taught her that no one is the same and that’s okay. But she chose to use my disability as an example that our differences separate us. And that we can only come together if they’re remedied.

We’ve made practice of judging and convicting each other for the ways we look, think and feel. Why do we insist on expending energies this way, casting our brothers and sisters as aliens to fear and enemies to fight? This is what’s wrong. This is what needs to be fixed.

I do have hope – as I recall the kindness in the big, brown eyes watching me from a chair – that the grating rancor of today’s world cannot compete against the unlimited power of a child’s desire to understand.

I don’t know when love and peace will be restored to our world. I don’t know when we can feel safe to be who we are. I don’t know when we will stop fighting against each other and begin uniting together. I do know that it will start with the lessons we teach our children.

I pledge to teach my nieces and nephews and my future children how to love completely, without condition. How to speak kindly, without spitting hatred. How to notice and care, without making a scene. And how to accept fully, without casting judgement.

And I will teach them to pray.

For people: Happiness, abundant.  Safety, guaranteed. Understanding, given and received.

For the world: Peace, always. Love, unquestioned. Acceptance, universal.

At First Blush

We spend hours in the bathroom and hundreds of dollars in our favorite shops making certain our hair is perfectly coiffed with not one out of place, our outfit compliments our best assets – just in case our date forgets to – and our makeup is effortlessly applied, masking and filtering our flaws.  All for the best first impression.

Who we are at first blush is hardly ever the best version of ourselves.

That’s hard to hear above a noisy pop culture. The one flooding our ears and filling our minds with false ideals of perfection. And illusive promises that the perfection we chase is the reflection of our significance.

We’ve listened to the clamor of clichés far too long. We’ve normalized criticizing and critiquing and swiping left or right for sport. We are blinded by desires to attain unreachable standards, for ourselves and others, and we cannot see beyond the veneers each of us tries so hard to keep polished.

When the day is done – when the makeup is washed off and the fancy clothes are stripped down – we can allow ourselves to take a breath and stop pretending that we have it all together all the time. We need to accept ourselves as the imperfect beauties we are, letting our truest colors seep through the cracks like light through a kaleidoscope.

I’m full of cracks and jagged edges. But I spent the better part of my young adult life fighting my body, cursing it for all the things it was and all the things it wasn’t. I wasted time shaming my imperfections and hiding my scars, forgetting to appreciate what they are: badges of strength and survival, meant to be celebrated and not condemned.

Our society’s voice does a spectacular job at reminding us that we’re a few crowns short of a beauty queen (unless you are one. Then get it, girl). What that annoyingly opinionated voice doesn’t tell us – maybe we just forget to listen – is that the things making us most flawed, tarnished, too complicated or broken are also the things that show our strength and fortitude, our sassy brassiness and our general badass-ery.

It’s taken a long time to fill the space that I’m in now. Where I realize we’re all just trying to make a mark in this world bold enough to keep our place in it. And I am not alone in all the times I have over-analyzed or under-estimated myself.

I know plenty more women have felt the way I have. That your form or style doesn’t fit a narrow mold so you question your worth and value. That you aren’t beautiful enough to talk to that charismatic guy you’ve been eyeing across the bar (you are, by the way, just as much as that leggy blonde next to you) so you settle for fighting over a bowl of bar nuts with the dude whose conversation skills are seriously lacking. That you won’t find The One so maybe you should just give up and finally adopt those cats (you will, by the way, but go get that cat. Make your own cat videos and send them to Ellen. She loves that shit).

I’m declaring it once and for all: ladies, we are all beautiful and worthy of every single good thing.  Whether you are short and curvy or tall and slim. Whether your skin is delicately pale or richly dark. Whether your hair falls in heaps of curls or hangs sleek and straight. Whether you rock heels or wheels. We are Queens. And fuck anyone or anything trying to tell us we aren’t.

Keep putting yourselves out there. Keep fighting against self-doubt and stereotypes for the sake of love. And everything else that makes you happy.

Be weird. Be different.

Be free and unabashedly proud of who you are.

BeYOUtiful

 

Year of Yes

I don’t know how it happened. I turned 30. I am legitimate. Kids are calling me ma’am.  Instead of feeling terrified of the milestone, I choose excitement. I like the woman I’ve become as I’ve gotten older; confidence comes much more naturally and so does a desire to try new things. I’ve declared a Year of Yes to explore new places, meet new people and find new interests. I’m ready to challenge my comfort zone and shake things up.

After months of saying but never doing, I have finally created a space where I will reflect, rejoice and release.

 

Take Your Best Shot, Cupid

He spit questions at me rapid fire, taking a breath only to suck down a glug of beer as dark as the V-neck sweater he wore. Unfazed by such a stiff, impersonal exchange – beginning to feel painfully more like a job interview than a first date – my answers came just as quickly, each a variation of the same smart, witty response I’d catalogued and pulled out what felt like 100 times before. We had both switched on Conversation Auto-Pilot, and if either one of us noticed, we didn’t care. We had accepted this loose interpretation of “getting to know someone” as “just part of the process.”

I was half way through a canned explanation of what I want out of life, laced with just enough pithy sarcasm to show him that I’m breezy, when he asked me the one question guaranteed to make me cringe: What’s the craziest thing you’ve ever done, he asked. For the first time all evening, I could see a glint of personality behind his bored eyes, and as one corner of his mouth turned up into a lazy grin, I knew he was looking for scandal. I slowly shifted in my seat, anxiously biting my lip and hoping a bit of red lipstick hadn’t snuck onto a tooth. I wanted so badly to be able to tell him stories of the times I zip lined in Hawaii or skinny dipped in a hotel pool, but the truth is that I’ve played life safely. I am an introverted creature of habit spending more time inside her head than outside her comfort zone.

At the risk of this guy finding me dull and uninspired, I answered honestly:

“This whole online dating thing is pretty crazy, don’t you think?”

I never thought I would be scrolling through faces until I found one I deemed attractive enough to skim their Self Summary, then scrolling back up to study their pictures to decide if they meet silly, superficial standards. I’m embarrassed to admit how many times I’ve looked at a guy with good hair and an even better smile and thought, ‘he must be a great guy, but there are hundreds more to see.’  This is dating now. And I am sitting in the front row of the bandwagon.

When I created my profile, I had zero expectations. It was simply an exercise in stretching myself, the girl more terrified by the idea of being vulnerable and open than by the thought of voluntarily free-falling from a perfectly good plane.

True to form, I showed my disability in pictures only, refusing to write about it. I didn’t want to expose too much of myself, fearing the kind of men I’m attracted to would pass me over. More than that, I wanted the focal point to be my personality and all the ways I take a bite out of life, not that I go through each day on wheels.

My plan worked until I received salty messages from men who felt duped by my, as one fellow e-dater described it, “calculated dishonesty.” His claim made me out to be manipulative and cagey, like I was intentionally hiding who I am, all for a laugh at the expense of a man foolish enough to be attracted to a woman who uses a wheelchair. The reality is that I am cautious to a fault, and after coming off the bench and getting into a game whose playbook is riddled with laws of physical attraction, I felt justified in my decision to be guarded. More unsolicited comments like, “you’re pretty for a quad,” and  “I can’t help but feel sorry when I look at you” and “you are an inspiration for looking for love,” validated my choice to be veiled.

But no matter how exhausting these brazen and bold opinions were, they weren’t shared in vain. After taking a beat from my quest for online love, I realized it didn’t matter what anyone thought but it did matter that I wasn’t being true to myself. Before I started this journey, I pledged complete authenticity. And although my disability does not dictate the impact I will make or the mark I will leave, it surely affects how I experience our world and has influenced who I am. Looking inward, I began to understand that in choosing to omit details of my life, I was silently admitting that a part of me believed who I am isn’t enough for what I want, what I deserve. In that moment, I was no better than these ignorant men perpetuating a stereotype that perceived differences equate lesser value.

That isn’t the message I want to send.

So, I logged in, clicked edit, took a deep breath (or five) and explained the muscle and nerve damage. With some quippy joke about how I earned my wheels early. I said I’m self-aware enough to know that the idea of dating a woman with mobility challenges may be intimidating to some men, but there’s more to me than that one piece. I am kind and compassionate. I have a creative mind and a quirky sense of humor. I work hard. I am fiercely devoted to my family and friends. I am so much more than what tries, but never limits me.

And suddenly, I was inundated with messages from interested men whose caliber finally met mine. Because I chose originality over perfection. And because I was brave enough to embrace the woman I am.

Don’t be fooled, I did swoon for some smooth-talking stinkers. One whose mom apparently never showed him Bambi, otherwise he would know: If you don’t have anything nice to say, don’t say anything at all. That sage advice didn’t stop him from making sure I knew, “you’re hot, but your chair is a boner killer.” If I ever see him again, I’ll thank him for giving me what is absolutely the title of my memoir. Then I’ll run him over.

I’m getting gassed out from our dating culture. I’m done keeping score with all the game playing. And don’t get me started on the ghosting. What the f**K is that, guys (and gals – we’re not innocent in this circus). Can we all just be adults here and say what we mean and mean what we say?  If you aren’t interested and would rather not see someone again: Tell them. It’s not hard.

Despite all the bad dates and all the disappointments, I have met some wonderful men, to be sure, who have each taught me necessary lessons about love and life.  What’s best are the things I’ve learned about myself. I’m comfortable on my own. I don’t need someone in my life, but I want to share it with someone. I like the woman I’ve become as I’ve gotten older. I’m not perfect, but I’m beautiful. I’m small, but I’m strong. I’m quiet, but I’m confident. I know my worth and what I deserve. I won’t settle for anything less.

So, Cupid, keep shooting those arrows. If you miss once in a while, I’ll be okay.