While standing in line at my local Wal-Mart earlier this week, I had the opportunity to hear the conversation of two young women immediately ahead of me. They were speculating on the real reasons behind two or three nearby folks using scooters to get around the store. “You can tell there’s nothing wrong with her,” one of them said. “Oh, of course there isn’t,” the other one replied. “The only reason she’s riding a scooter is because she’s a big fat blob and she’s a big fat blob because she’s a lazy bitch. That’s all.” Other than make me wish, once more, that people came equipped with mute buttons you could push to silence their mindless babbling, it got me thinking about some of my own experiences as a disabled person.
Several years ago, when I was still able to work, I was helping out a friend while her car was being repaired by giving her rides to and from where we worked. One morning, the weather had traffic tied up, causing us to run a little late. The lot we normally used was entirely full—except for a few handicapped spaces in the first row. Even though I was entitled to use these, I seldom did, but was not up to a half-hour hike if I parked elsewhere. As I pulled into one of these spaces clearly designated Disabled Persons Parking, my passenger and colleague looked the incredibly full lot over and said, “You know, I bet most of the people with these tags aren’t really disabled; I bet they’re just like us.”
“What?” I asked, switching off the ignition. “What do you mean by ‘not really disabled’?”
“Well, you know,” she told me, “people like my Mom; people in wheelchairs and stuff.” I eyed her curiously for a moment while I considered my reply. Considering her educational background, and the responsibility of the position she occupied in my division, I was truly surprised to find this woman held such an opinion of disabilities and disabled people.
We’d been working long hours on an important project for the past several days; it was the combination of physical exhaustion, my surprise at her revelation, and the unpleasantly steamy temperature of the morning that inspired my next remark. When I am hot and tired, it gets really difficult for me to mask the symptoms of the pain that I feel round-the-clock. “Janet,” I said, struggling to keep up with her powerful, long-legged stride, “you might have noticed my limp.” She nodded. “Haven’t you ever wondered why I limp?”
“Well, yeah,” she replied, “but still…”
“Still, I’m not in a wheelchair, don’t carry an oxygen tank around with me, don’t have to use a cane or crutch or walker that you know of, have a decent education, a good job, and speak several languages?” I asked, and she nodded again. “And it’s really hard to think of someone as being truly disabled if they look normal, isn’t it?”
She sighed, relieved. “So you see what I mean,” she said. “Good; I was worried.”
I touched her arm and she looked down at me. “Janet, my friend, I think we need to have a talk later,” I told her, “because not all disabilities are visible on the surface.”
It’s a curious attitude that I encounter in people from all walks of life and backgrounds, that expects ‘real’ disabilities to be as plain on the folks who have them as copper is on a penny. But the plain truth of the matter is that disabilities don’t necessarily appear on the surface of those who bear them. Some conditions simply are not visible without specialized equipment, training, and/or tools. And, sometimes, a disabled person will do a great deal to hide her disabilities. A very great deal.
I know this because I am one of those people. No, it’s not my favorite thing about myself; I didn’t even realize that I was consciously doing it for several years after becoming disabled. Why I do it can be summed up neatly by saying I don’t want to be considered disabled. I don’t want to be disabled. But, of course, it’s really not that simple at all.
I think it’s probably the rare individual who has not, at least once or twice, looked at a disabled person and said, thought, or felt something rude or uncharitable; I know I can’t say that I haven’t—but that would be true of me were we speaking of disabled or non-disabled people. I can be just as sarcastic and snarky as the next guy, and I frequently am. But what I’m talking about here is looking at the morbidly obese man who just took the last scooter at Wal-Mart and saying, “If he wasn’t such a lazy blob, his ass wouldn’t be that fat and someone who really needs that scooter could use it!” We know nothing about that man; maybe he just had knee surgery. Maybe he has a metabolic disorder and can’t lose weight. Maybe he has a heart or lung condition that makes it difficult, if not impossible, for him to take any real exercise. The point is we just don’t know, but that doesn’t stop us from assuming that we do.
It’s not precisely that I am ashamed of being disabled. It’s more that I don’t want to be thought weak or vulnerable or useless. I didn’t ask for a doctor with a drug problem to be stoned and stab me in the spine during a surgery that was supposed to repair damage and let me get on with my life and career. I didn’t ask for the extra pathway in my heart that screws with its rhythm and makes my life bloody difficult when it acts up. I didn’t ask for that damn rock in North Carolina to slip and send me tumbling forty feet down a mountainside, smashing into every tree and boulder in my path. I didn’t ask for my gallbladder to secede from my bodily union and develop a neuropathic pain syndrome as a result of the surgery that removed it.
I didn’t ask for the elderly man out getting his wife’s prescriptions to forget he wasn’t supposed to be driving on his new meds and fall asleep at the wheel of his car. I didn’t ask for him to then strike my driver’s side door at nearly 60 mph when he shot through a red light and plowed into me. I didn’t ask for my ex-hellsband to get wasted out of his mind on half a dozen drugs, combine that with several kinds of alcohol, and then try to kill me after being served with divorce papers. I didn’t ask for any of that to happen, but it did. I didn’t ask to be disabled, but I am.
Generally, people have no idea that I am disabled just by looking at me. If you’re in the emergency room when I come in shaking, sweating, and unable to speak because the tachycardia is in full swing, you might have an inkling. If you see me on a bad pain day and I’m limping heavily or unable to use my left arm, you might have a sneaking suspicion, but since I only use a cane in private, a wheelchair when forced, and refuse to ride on a scooter on the grounds that I would likely injure people more than I would help myself get my shopping done, you probably wouldn’t ever get to the point where you realize that I am disabled.
On my first visit to him as a patient, one Ohio doctor exclaimed, “I had no idea you had so many problems! That you were in so much pain—that you were disabled!” I remember thinking, of course not, because there was no reason for you to know when I wasn’t your patient, only accompanying my husband to his appointments. While in hospital thanks to tachycardia a couple of years ago, one doctor said, very surprised, “But you’re too intelligent to be disabled.” No, I’m not kidding; it was a real doctor—a cardiologist, no less—who said that. One emergency room nurse gave it as her opinion that I was “too young” to be disabled. Fools.
I’ve lost track of the people who’ve told me that they envy me not having to work. No person in their right mind would choose this. Would you? Would you choose to never know when your heart’s gonna go wonky and you need emergency help to frigging breathe? Would you trade having to get up and go to work for having to stay home and not be able to support your family? Would you trade knowing the only raises you’re ever going to get are going to be cost of living allowances, and possibly tiny increases in the Federal Standard Deduction for the paycheque you get now? Hell no, you wouldn’t. I wouldn’t. I admit to possessing my fair share of the basic human inclination to laziness, but I would much rather have a career, a real career, and a real income, than being disabled and not able to earn a real living.
At the heart of this, I suppose, is the fear that I’ve lost any chance I had to reach my true potential in this lifetime, along with a certainty that others must also see that about me. Living in constant pain alters your perception of yourself, of your life, of everyone and everything around you. Things you used to be able to do without a second thought now require special help or tools, or just cannot be done at all. Holidays have to be planned around medication refills and doctor visits. Your life changes, you change, when you become disabled. Your heart and soul are screaming, “It’s still me! I’m still me!” But deep down, you know you’re not.
You are forced to face what can be frightening limitations. Where once you possessed reasonable confidence in your ability to take care of yourself, you see that you need help. You watch others watching disabled people, see the looks of revulsion or pity on their faces and know you cannot bear strangers to see you thus, let alone family and friends. You cannot bear for those you love to see you as any less than what you were before. You lose faith in yourself; in all you ever have been. And that’s when it hits you.
Maybe the biggest problem of all isn’t how others see you when you’re disabled; maybe it’s how you see yourself.