Wednesday, May 11, 2011

The Secret Disability

- By Stephanie Hickey -

"I would never have known if you hadn't told me." People tell me this often. They're referring to my being disabled. I've previously mentioned that I am not visibly disabled. I, in essence, "pass" as--for desperate want of a better word-- "normal". And individuals make this remark in a flattering tone, when it's the least complimentary thing one can say.

I have no wheelchair or leg braces. I can walk heel-toe, heel-toe (as opposed to awkwardly stumbling on my toes) beautifully, but the little things get me. Muscle spasms go unnoticed under dinner tables, cramps fill my wrists, and after tiring, I can no longer walk my good walk. Strolling down the street, I fall suddenly--apparently for no reason. My ankles have tightened up and given out on me. I have constant back pain I hide well. It's challenging for me to use (control them with precision) a computer mouse or a manual can opener and I want a man who will cut my steak. It's not romantic, but all these tasks are thorny propositions for me. But none of these situations are really obstacles to my daily life. They are simply irritations, minor nuisances.

Most irritating are people's attitudes that I encounter--their frustrations because I do find some tasks challenging and they see no obvious reason why I should. I don’t look like I deal with constant back pain, which medication only eases and gives me the capability to do things. This attitude doesn't bother me because I know those feeling that dissatisfaction don’t know my history. They don’t know my first sixteen years of life were filled with leg braces, wheelchairs, surgeries, therapy, therapy and still more therapy.

I suppose the most upsetting thing about “passing” is the internal struggle with which I deal. I don’t always disclose my disability, for fear of being judged as fishing for sympathy. I feel like I'm hiding my disability as something of which I am ashamed when nothing is further from the truth. But what is most painful is the inner conflict I feel when I am around the “visibly disabled”. I do not feel sorry for them. I know they don’t want or need my sympathy. But I experience terrible guilt. Those first sixteen years were packed with so many difficulties, challenges and so much hard work that I'm incredibly proud of myself, knowing how far I've come--that I've improved enough to "pass". I also realize how blessed I am that my condition could improve to this point, but it stings when I see someone whose condition I know can only improve so far, or perhaps not at all. Why should I be so blessed? Why can I not trade some of my progress so that other disabled individuals' conditions can advance? These thoughts always haunt me when I am with the visibly disabled and it pains me that some may think I don't understand their struggles because I "pass".

My parents say I shouldn't feel any guilt; I should thank God for my blessing and leave it at that. But I can't. For every blessing I count, I also wish I could share my blessings, my advances for every disabled person I know. As much as the difficulty of cutting my own steak or controlling a computer mouse is with me, so is the ever-present twinge of guilt I have for "passing". And I have to deal with it like I do everything else: realize it's a challenge but understand it's not impossible and move on.

Is your disability hidden? How do you feel about having a visible/invisible disability?