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.

Happy birthday, Paul

Today is my little brother's birthday.

He would have been 31.

He died last November at 30 of respiratory problems due to spinal muscular atrophy.

Our sister (between us) died seven years ago January at 27 for the same reason.

She would have been 35 this coming August.

I'm an only child now, and holidays and birthdays mock me, laughingly remind me that my two strongest allies in fighting this disease are gone.

I've cried four times today. Cried four times for my little brother who lived with nerve pain for years, who took asthma medications and breathing treatments every day, who loved to read Philip K. Dyck and Shakepeare and had a paper of the history of Narnia published in his professor's book (how bittersweet it will be to watch the new film this Summer) and had two poems published, who gave you a nickname to prove he liked you, who could do a perfect imitation of Timmy from South Park (I'm sure he was actually the model for him), who loved to feed Cheezits to my dog.

I miss him so much I think my heart will just shrivel up.

HAPPY EARTH DAY!

Only within the moment of time represented by the present century has one species -- man -- acquired significant power to alter the nature of his world. (Rachel Carson, Silent Spring)

It is a wholesome and necessary thing for us to turn again to the earth and in the contemplation of her beauties to know of wonder and humility. (Rachel Carson, Silent Spring)


HAPPY EARTH DAY!!!




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Expressing an opinion?

I just finished watching the Hallmark presentation movie "Sweet Nothing in My Ear" (ignoring the horridness of the title) starring Marlee Matlin and Jeff Daniels. The story is about a deaf woman and a hearing husband who eventually come to legal separation from each other over whether or not to give their eight-year-old son (born hearing but slowly went deaf around age four) a cochlear implant.

I liked that the movie ended before the parents made a decision. I felt that it was a good way to not pass judgment either way, to let the ending speak to individual choice.

But just then, they advertised Hallmark magazine. In the current issue, there is a story about a woman who was born severely hearing impaired but chose in her mid-30s to get a cochlear implant. Before anyone starts flaming me, I have no judgment about Ms. Olson. She made the decision she felt was right for her. What I care to submit is the way Hallmark magazine only put in a story about one person receiving the implant and didn't round out the issue with a story of a person who lives every day with no sound. Even within the story they have, they gloss over the fact Ms. Olson will be battling balance issues for the rest of her life due to a surgical complication. Granted, it doesn't happen in all cases, but I feel as though the article was geared toward "the small miracles of sound" and the "funny" anecdotes about fixing the refrigerator because it was so loud ("No, Mom, it always sounds like that" -- oh, isn't that quaint).

I know, I know. Hallmark is give-you-diabetes sweet (their commercials were giving me the jitters), but I can't help feeling that an opinion is being expressed. I probably shouldn't even have watched it because I'm easily made cranky these days.

Did anyone else see the movie? What are your opinions?

In the news, on the web

An article about a girl born in India last month with two faces. Rather than being scorned or despised, she's being hailed as a reincarnation of Durga, the Hindu goddess of valor. She is apparently not suffering any of the health problems that usually accompany craniofacial duplication.

"20 Minutes" calls him a musical savant. I call Derek Paravicini still more proof of not judging the inner workings or the heart of a person by her/his dis/ability.

Making disability a campaign issue

My friend Kim sent me this link earlier today in an email titled, "Another reason to love Obama." Obama is the only presidential potential to list disabilities as its own separate issue on his campaign website. I have only skimmed through Clinton's and McCain's campaign websites, but so far I have not even seen where they address disabilities in connection with another topic (like health insurance or ethics). I've read through the first two points of Obama's plan -- providing PWDs the educational opportunities they need to succeed and ending discrimination/promoting equal opportunity -- and I like what I've read. I'm interested in reading how he plans to address his last two points -- increasing the employment rate of PWDs and supporting independent, community based living -- but alas, I have more immediate academic problems to ponder such as:

Why have I lost approximately 210 of my original 240 fish I just bought a month ago?

I often wonder . . .

. . . what Reba sees when she wags her tail in her sleep.