The Image of the Cripple

Upon reading Beth's post about her monstrous body, I felt my reaction would be far too long for her comments section. So, you get a post from me.

So, what exactly is a cripple? What does one look like, and what can one show me?

I was told no less than three times last Summer while working with various -ologists and specialists things akin to, "I've never met anyone your age with your early onset." Translation: you onset at a year and a half, you should've been dead by 21, but you're 36. They all twitch. Then their eyes go all dinner-plate-ish when they learn I'm in a Ph.D. program. They damn near pass out when they hear I live alone. Further translation: I'm a freak.

I often find it funny when I -- who does NOT have a "normally shaped" body -- have to have a doctor's signature to get a disabled license plate for my van or a wheelchair bus pass. *looks down at twisted spine* Hello!

I used to not speak with candor about my disability because I got tired of people seeing me as "pessimistic" rather than realistic. I am not having babies, not with this short torso -- I'm OK with it, you can be too. Not only do I not sit around pining for Jerry Lewis to cure me, I recognize that a cure could be found tomorrow and I will still not walk. My body has undergone far too many changes because I can't bear weight to ever delude myself on that score. And when I say I got tired, I mean I was tired of the length I had to go to in order to explain WHY I will never walk in this lifetime. And even after all that, they just smile and look at me like they want to pat me on the head and say, "Whatever you want to believe, dear." Of course, they DON'T pat me on the head as they all seem to correctly interpret my look that informs them, "I bite."

Beth says she has a difficult time because she will be near comatose one minute and looking perky thirty minutes later. My problem is this -- the degeneration that can be fairly slow for quite some time and then takes a leap. My hospital stays seem to be responsible for many of the leaps. They suck, and I don't get them back. There hasn't been any return to lifting my arm off the table to put a bite of food in my mouth since it has had to rest on the table's surface to perform the same task. My best hope is to delay as long as possible the inevitable having to be fed by someone else.

I dream of visiting Scotland and Ireland, Germany, Greece, and even Africa. To have the grand experience, even with all the inaccessability issues, that Beth so recently had in going to Japan. The longer I live, the less likely it becomes because I cannot use an airplane bathroom. My scrunched spine couldn't handle the hours in an airplane seat as I flew over the Atlantic. My monstrous body just can't cope.

But the biggest hurdle with which I deal is in fact mental -- how my body is perceived by "normal" (ha!) people screws with my self-image. Slowly, ever so slowly, years and years of subtle and not so subtle messages from people around me -- including my own family -- have made me think of myself not as a confident woman, a go-getter, someone who goes after and gets what she wants, a woman who is a loving and supportive friend, but rather as a fat, twisted, undesirable burden on everyone around her.

I have had to fight for recognition wherever I have gone. I have, as my father so wisely told me I would, had to work twice as hard to prove I'm just as good. And Higher help me deal with the attitude I'm given if I'm better. But I'm not sorry for it. By fighting so hard, I feel I can appreciate my achievements more. There are times, though, when I'd rather work on my career than fight just to get in my own building which lacks an automated door.

Make little comments all you want. Deny me my automatic doors year after year. Pity my disability and my body. Pray for me all you want. But I have news for you.

This is the way my body looks. Deal with it.

Pray for my healing all you want. The Higher made me this way.

Set obstacles in my path. I will crush them or knock them out of the way with the help of my 300+ pound power chair.

I'm not courageous or inspirational. I'm not plucky or spunky.

I'm a loud-mouth of Scottish, Native American, and Swiss descent (and that's just through my dad).

I am a person of respectable intellect and ambition.

I am more than this monstrous body will show.