Andrea Campos

On Being Invisibly Visibly Disabled

Being invisibly visibly disabled may seem like a contradiction. On the one hand, you’re just like everyone else—normal to all appearances, fully functioning, unimpeded by the physical landscape. On the other hand, you can’t form a fist because your fingers don’t have the ability to bend or move in any dexterously significant way.

I am a disabled woman—a visibly disabled woman, but more often than not, an invisibly disabled woman. I was born under strange circumstances where the entire right half of my body was significantly weak, much like what may happen if you suffer a stroke and one side of your body loses function or becomes paralyzed. Indeed, most doctors I have seen theorize it was a stroke that caused my disability, though no one can say for certain. It’s a mystery that will never be solved, only named: hemiparesis, or more generally, cerebral palsy.

At first glance, you likely wouldn’t be able to tell I have a disability. I’ve learned from my experience that most people aren’t especially observant, based on how many people are shocked to learn the presence and extent of my disability. “I never noticed!” is a common refrain. However, I’ve also learned that those few people who are observant are remarkably so. These people have a fascinatingly heightened awareness of others, if not of someone’s subtle physical differences, then of someone’s behavior in, as has often been the case for me growing up, trying to hide that difference.

On a second glance—or fourth, or twentieth, or when my disability is on full display (such as when I’m typing, or when I have my arm resting comfortably in a twisted, contorted manner, you would definitely be able to tell I’m not your average able-bodied lass. My arm appears thin to a worrisome degree and because my triceps are particularly weak, I have a permanent bend at my elbow that can’t be fully straightened. My palm is very flat, and my fingers are splayed out in a near calcified state. For whatever reason, I am only able to bend my ring finger slightly, which has been extraordinarily useful – nearly making up for all my other deficiencies (I can’t tell you how many things are possible with one “functional” hand and a bendy ring finger)!

My right leg is thinner than my left leg and a touch shorter. My face has a vague asymmetry and I definitely have a crooked smile. On the whole, I am physically and visibly disabled. But I am also invisibly disabled, because it’s often not obvious, and this has been tricky when navigating the waters of relationships and identity.

Because my body is in a sense cleaved into two differing halves, I have struggled with a cleaved sense of self – am I able bodied? Am I disabled? Am I disabled enough to warrant the term? Should I tell people about it or keep it hidden? For the majority of my life, I’ve opted for the latter. Since my disability is most often invisible, I tried not to bring attention to it, and by extension, to myself. I kept it out of the way, an inconvenience to ignore if not actively hide, and if someone noticed or brought it up, I minimized it.

But somewhere in my personal bildungsroman, I started not to care as much. Maybe, as my fellow peers matured, and grade school cruelty began to wane, I began to feel safer being seen, and when asked, to divulge a little bit more about myself rather than quickly explaining myself away. Somewhere along the way, I woke up and felt sick to death of hiding.

Thanks as well to an amazing Disability in Literature college course taught by a professor who was herself disabled, my own preconceptions of disability — and the shame that so often goes with it — were challenged. I learned that disability is not so much a “lack” of ability as it is a lack in the physical environment to accommodate people of all kinds of abilities. For instance, most people can use two hands, so it stands to reason that most restaurants will supply you with a fork and knife with which to eat your food. But if you can’t, then you’re in a bit of a bind — not because of your own abilities, but because most restaurants simply don’t provide an adapted one-handed rocking knife, for example. Cars were designed with the thought that everyone has adequate strength in their right leg, so the gas pedal is positioned for use on the right. Even something as banal as opening a bottle of soda requires two-handed coordination and strength that I certainly don’t have. Does this mean that none of these tasks can be accomplished and that there’s something defective with the person who can’t? Heavens no! The design of our social landscape is just unimaginative, limited, and limiting for a great number of people termed “disabled”.

With a little bit of knowledge and pride under my wings, I have come a long way from the shy, awkward girl I once was. However, I’m still pretty awkward and shy, and I still have a long way to go. Sometimes the prevailing narrative that disability is something inherently negative creeps up and colors my own thinking. I’ve started to accept that this will likely be a lifelong battle, and I will need to constantly remind myself of the very basic and objective fact that there is nothing wrong or lacking in me.

I am undeniably, and on the path to proudly, a disabled woman. If other people cannot see this, I will let them notice on their own terms. I don’t believe I owe an unprompted explanation or demonstration of the simple reality of my being to everyone I come across. Just as you have no need to shout “I am able-bodied!” when you enter a room, I have no desire to clue everyone in to my disability wherever I go. I accept the fact that my disability will be invisible to some. Sometimes it becomes invisible to myself, simply because it is the only thing I’ve ever known, and it’s my normal experience. In other words, it’s nothing special or different to me. But if you happen to notice and ask about it? I will happily tell you. Thanks for your interest.

Publish Date: August 13 2017
Categories: Life

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