So it seems that people feel sorry for me. I’ve been trying to understand why – my whole life – and I can never come up with any sort of rational answer. But I reached a point of exhaustion so long ago. I can’t even discuss the ongoing issues of my life because all people want to do is feel bad about it.
I’m not trying to make you feel bad. Continue reading
A slightly tweaked version of this piece appeared on Daily Kos
The funniest thing I do is watch people and how they react to me. It’s not just the chair – it’s the hand-controlled truck, it’s the handicap accessible apartment. Just seeing someone eye all this medical and accessibility equipment and gape all curiously makes me laugh inwardly. Has no one seen a shower bench before? A truck’s wheelchair lift? I can’t even tell you how many times I’ll be out in public, at a grocery store or movie theater, and someone just stands and stares while I use the lift to swing my chair out of the truck.
I attract crowds.
It’s like I always have a captive audience wherever I go. Everyone wants to stare at the poor little handicapped kid. And it’s strange – people have a way of looking right at me, of standing and watching my life play out; people are invasive, but even with the focus on me, people always look past me. They always look past what I’m actually doing. When I get out of my small apartment with its mostly bare, white walls and go drive somewhere, I manage to get myself across the city on my own, in my own truck with my own wheelchair lift. Then I can even get out of my truck and go inside these places, talk to people, get groceries, do everything I need to do… but somehow, people only see the poor crippled kid.
I would like to know why anyone would feel sorry for me, and it seems to be quite a bit of the people down here in the backwards abyss that is south Alabama, blanketed with humidity in the atmosphere that leaves anyone feeling choked. Honestly, I feel like it’s a huge waste of time to feel bad for someone in my situation, as seated as I may be. Do you know how many people have a worse life than I do? It’s a lot of people. Please don’t waste time feeling sorry for some guy who’s sitting down and still managing to do what he wants to do.
Feel bad, if you must, for the people who won’t try. The people who think it’s not worth it. The people who have just given up. And it’s so many people. You don’t have to go out to make a difference. I’m always surprised to hear from nurses and doctors who have worked with paraplegics for so long that it shocks them that I’m so active. I mean, what else is there to be? Do they expect me to lie around in bed all day feeling terrible and wishing I could walk? I’m not gonna walk, not ever again, and that’s the way things are. But who cares? What are the important differences between people who can walk to whatever places they want to go in life and people who wheel to those places? Can anyone think of any? I can’t. What matters is what you do. not whether you’re sitting down or standing up when you do it. It’s not even where you go. If you even leave your place to do what you want. It’s just not.
And I’ll always do things. Sitting down has done literally nothing to keep me from experiencing life the way I want, with the exception of the frustration I often feel from my lack of having local friends. Even there, though, I unquestionably have the best friends you could ever dream of having. They don’t live nearby but they treat me better than most of my family and all of the strangers here. They treat me like a real person with thoughts and feelings beyond just “how is your handicap doing today, Scottie? Just was curious since you haven’t mentioned the whole wheelchair thing in awhile. You’re in one, you know. Just to remind you.” I’ve never felt “disabled” with my friends. Never. My friends have done more for me than you will ever know – they mean more than I could ever just type out in a single piece of writing.
However, I was discussing my crowds of swarming fans I have here. Now back to your regularly scheduled programming.
People love to look. Watching me, I guess, is entertaining, or fun, or tragic. All of the above. If you’re just watching, it’s like a short movie. A sitcom. A few minutes of emotional involvement and sympathy, and then you can go about your day and forget the experience. Maybe you tell someone about it. Maybe they feel bad, too. You can keep it going if you try hard enough. With all the caring you’re soon to see a river of everyone’s sympathy tears. A flash flood. And then it’s over. It’s easy to care when you know ahead of time it will only last a minute. It’s easy to share someone else’s story, to make other people care too; it’s easy when it’s not your friend and you know you don’t have to reach out to anyone. You never have to understand, to feel empathy, to ask any questions. You never have to know my name. And still, your friends love you, because you care. And you get a good cry and attract attention of your own.
I’m glad that people have a keen interest in how my wheelchair lift works and how I can get in and out of said sitting accessory, but no one thinks to ask me any questions. No one wants to know what my life is like. No one ever wants to get too close to the poor, poor cripple. But everyone wants to stare.
I’ve seen the best sympathetic looks. Worthy of a photo-op, really. That alone is worth being paralyzed. When everyone knows they’re being watched in a crowd of sympathetic onlookers – because it’s never just one person staring, why stare with a look like that if no one can witness the performance? – they try so hard to look so pained. Because that’s the human response. But everyone is driven by curiosity. No one can help but stare at a car crash.
But nobody ever wants to know what happened. If I were ever asked, I don’t even know how I’d react. I would feel such immense happiness I wouldn’t know how to handle it. I know it’s on people’s minds. I know everyone wants to ask me. I know they’re holding back. But But satisfying their curiosity once and for all is just something that never happens.
I would be so happy if someone asked me what happened, I would probably cry.
I feel invisible when people pretend like I’m not sitting down unless they need to look at something pitiful. My favorite fiction book anyone ever wrote talks about this feeling. It’s about a supermodel who gets her face shot off and then road-trips with her friends, taking drugs and dosing them with hormones along the way. From Invisible Monsters by Chuck Palahniuk:
Until I met Brandy, all I wanted was for somebody to ask me what happened to my face.
“Birds ate it,” I wanted to tell them.
Birds ate my face.
But nobody wanted to know. Then nobody doesn’t include Brandy Alexander.
Just don’t think this was a big coincidence. We had to meet, Brandy and me. We had so many things in common. We had close to everything in common. Besides, it happens fast for some people and slow for some, accidents or gravity, but we all end up mutilated.
Birds ate her face, and I wear t-shirts saying “Keep Staring I Might Do a Trick.” We do what we have to do to deal with people. It’s the way you cope that matters. It’s the ability to adapt.
And then, of course, when people I’ve stumbled upon do talk, it’s always “can I help you out with something?” It’s “here, this is how you open this door, it swings the other way” because sitting down means you don’t know how to open a door. It’s tragic, really. You sit down and suddenly all cognitive function ceases.
Someone should work on a cure for this.
And, people always want to offer suggestions. “You can be a Wal Mart door greeter!” And, “you know they have wheelchair basketball!” And “you know there are people who can win marathons even in chairs!” No, I can’t even imagine! Someone can win a race using a chair that is propelled by wheels? Oh my.
That’s why this is so relatable:
“You know,” Evie tells me across a stack of Vogues, and Glamour magazines in her lap she brings me, “I talked to the agency and they said that if we re-do your portfolio they’ll consider taking you back for hand work.”
Evie means a hand model, modeling cocktail rings and diamond tennis bracelets and shit.
Like I want to hear this.
I can’t talk.
All I can eat is liquids.
Nobody will look at me. I’m invisible.
All I want is somebody to ask me what happened. Then, I’ll get on with my life.
And then, there are the guys.
You know what I mean: the guys who need to be seen helping the poor, defenseless crippled kid. They need all women everywhere to pay attention. Because they’re so good-hearted and helpful, even to unfortunate souls who can’t do anything but sit down. And we all know how women can’t resist seeing guys assisting a crippled person get into a vehicle. Or open a door.
Or, you know, something.
My friend Michael recently suggested I deal with this awkwardness in the only rational way anyone can approach it without clawing their eyes out: a snarky Craigslist ad announcing my goodhearted effort to assist desperate single guys in this endeavor – for a price, of course. It would read:
Are you having relationship problems? Are your straightforward attempts to woo women not working out so well? I am a paraplegic and I have something to offer you. It could change your life. I have found the true secret to gaining attention and respect from the opposite sex: I will drive to the location of your choosing and allow you to help me across the street in front of a gaggle of ladyfolk… for twenty dollars.
For fifty I will thank you profusely.
For a hundred I will pretend to cry.
Because really who doesn’t love screwing with people?
So this is an illustration of what life is like. This is the complicated mess of conflicting thoughts and inner processes that go on. This is the strange cognitive dissonance. I’m invisible – my disability is invisible – when someone’s up close. But when they can stand far away, it’s the only thing they notice about me. No one sees me but everyone looks at me.
This is how it is. Just thought you should know.
(Crossposted from my piece at The Huffington Post)
We are an invisible minority, Secretary of State Hillary Clinton said of us recently in a speech to the United Nations: unseen and unheard from in many parts of the world, even hidden away in parts of our own country. Our stories aren’t told, not even now, and our history has been wiped out, washed away to hide us from sight, to keep the history of the world, of our country, as clean as possible. Our faces aren’t seen, our voices silenced, by death or fear.
Our queer community, our people, our group of “others,” is invisible.
In the South, where I live, it’s still an exceedingly arduous task just toiling one’s way through the rough landscape of this sanitized atmosphere: everything seems so bleak, so far away. It’s as if you’re supposed to think, supposed to always be afraid, that there’s no one like you here, no one on your side.
Just coming out to anyone as gay is a process, a terrifying chore that you hope you never have to do. You dwell on it, agonize over it like nothing else in your life, knowing nothing you will ever experience will compare to this. But you know you have to do it. I had to do it to feel honest; I couldn’t deal with the dishonesty, not anymore. And the other choice I had was a coward’s choice — never something for me.
Living in a place like this, you make choices daily, hourly, about how open, how “queer,” how “other” you want to be, how much you want to expose yourself to the people around you, if at all. And then there are times when you don’t do it, and you’re left feeling empty, a shell, someone who’s not really “you,” because your community, the place where you grew up and work and make your home, doesn’t accept you.
Invisibility is so much more dangerous than the alternative. For me, coming out made me more visible. For others in the queer community, for people who are transgender, visibility means something different — but all of us are driven to be seen; we’ve earned our place here. Being seen can change you, and it changes everyone around you.
Being disabled, in a wheelchair, I deal with the contrast every day — one minority status that stays invisible, and one that’s left open, out in the light, possibly exposed to the whims of some bully, somewhere.
It seems so much more impossible to fight back against anti-gay attacks than it does when I’m targeted for being disabled. I have to wonder about opening myself up to confirming who I am, and the uncomfortable silences, the bitter looks, the angry sneers from the people who don’t, or won’t, understand. Only in that situation have I ever had to contemplate the fact that they would know, the people attacking me would know, the people around me would know, and only in that situation have I felt the utter fear, the anxiety of movement, the dread of knowing that any action I could take could go so wrong for me, could end friendships, could alter the rest of my life in ways I couldn’t even conceive of at the time because all I could focus on was the cold, paralyzing anxiety, the unease that never really goes away. People already know I’m disabled. You can see a wheelchair. If you attack someone in a wheelchair, they can fight back against attacks on disabled people, and there’s no revealing secret. They already see you.
I’ve always felt stunned when anyone even bothered to discuss my disability in a negative way, much less to outright attack me. I’ve always had back-up. I’ve never felt alone in that. I don’t think people always understand what they can see, but they will defend it if they feel the need. The very sight of a person in a wheelchair being hounded by bullies, being threatened or even physically hurt, can make your heart ache. And even more telling, it makes the other person look stupid. Who wants to be seen doing that? Anytime I’ve been hounded by people for being disabled, it’s always in secret, in the shadows. And I’ve always felt as if people try to be as subtle as possible, or as hidden as possible, when they’re bullying or discriminating. No one has outright refused to hire me for a job. But they’ve held job fairs where “everyone gets called back” and you can guess who didn’t get called back. They’ve wondered whether I can really do this job, because the counters are so high, or whether I can do this job, because my health seems so volatile. They always try to be careful. No one comes up to me in the middle of a crowd and attacks me for being in a wheelchair. But if I’m alone, if it’s just me alone reading an email, or me going down an empty hallway, or me alone in my truck at night, that’s when they go for it. They can type rude things when their friends aren’t around. They can turn their headlights on so bright at night and get so close to my truck when I’m driving alone at night that I have to pull off the road because I’m blinded — this has happened to me; I’m told by cops it happens all the time to disabled people, that people love to prank those who can’t fight back, in the dark alone.
But attacking someone for being gay? In Alabama? That’s something that’s completely accepted and almost a part of entry into Southern life. They’ll come right out and call you “faggot,”; they’ll scream their heads off that you’re a “tranny”; they’ll find you and beat you up in a classroom in a school filled with thousands of people. It’s almost no problem. No big deal. No skin off their backs. The worst anyone really gets for attacking a queer person is a slap on the wrist, even somewhere like the United States. I grew up listening to the worst type of language. I lived through the worst kind of verbal abuse — completely unintentional, and that was what made it so terrible, knowing they could just say whatever they wanted. I will probably always remember how easy it was for everyone in my family to throw around words like “queer” — used in a negative way, of course, because using the words our people use to celebrate ourselves as an insult, a talking point, a cheap line, is the easiest thing to do — and I could do nothing but sit there and take it. There’s nothing, no power against this type of attack, against this type of language, and you feel it directed at you, because that’s you, they don’t know, but it’s you, it will always be you, and you can’t change. You can’t change them. You wait in silence for the day you can finally leave and know it will be better. And there’s the powerlessness that always seems to come when you know, you just know, in the deepest part of your heart, where it always stays forever, that they wouldn’t do this if they knew, if they’d always known, if you’d just said something. It seems like it’s just words, really. It’s not that hard.
It’s only admitting who you are. But it’s the price — the price is always so steep and you can’t go back, ever. Thinking about it even now that I’m on my own, remembering the desperation I felt and the conflict that always seemed to be inside me, I just don’t want to keep things like that in my head always.
Hiding always leads to so much danger, whether it’s the danger of a queer person hiding themselves away from the world in hopes of making it through the day, or the danger of a bully hiding themselves away in a dark corner, in hopes of making it through an attack on an unsuspecting victim.
I’m around people all the time who feel like they can throw out comments about gay people indiscriminately because I don’t “look” gay. Because I’m not the one out in the open. Try to get someone to mock my disability and it isn’t as easy, because it’s not out in the open where everyone can see. And you wonder if you should stay or leave. Is it really different somewhere else, or is this all there is for you? You might even wonder if, after everything you’ve heard, everything you’ve experienced, this is what you deserve.
I think that matters — the difference between being invisible and being seen — if you want to eradicate hatred of queer people or anyone else. Making yourself visible changes everything.
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