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.
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10 comments:
Well, I like this response very much, and I think it would be of great value if you decided to submit part of a memoir (250 words) to the anthology.
Yes, never going to spend time "passing" as AB but sitting down or explaining again that looking 'healthy' doesn't mean you don't have to use a chair.
What is funny is that it took three readings for me to "get" the "funny...have to have a doctor's signature..." - and I'm thinking, "Why is that funny, becuase people would assume she wouldn't own a van?" - and then it is like "OH, because she actually looks....well, kind of obviously...see, can't say it - hmmmm, twisted? In both a good AND a bad way?"
It is such a refreshing perspective. And while I think there is more to the story than the obvious, "Well then I wouldn't stay in the hospital", and I see that particular stretch of future ala food/feeding with a bit of, what, anger/frustration/inevitability - Can I indulge in the "not fairs" without being run over?
Not a big fan of the voices, and I didn't have the chorus you had. Or rather am only now getting to meet that PARTICULAR chorus, and what a group of dickhead voices they are, that what you see or what mobility aid actually tells you anything?
You are a person of intellect to be respected, don't know about the ambition - but do you really not want to inspire your students to study your field? Or do deeds of daring like run over the feet of particularly dull and irksome police? I tend to find that having being handed the "courage" platter for taking a morning dump by society, we (me too) undervalue the word - to act against fear - you told me you moved 1000 miles and that I should take a leap, and now you want to disown "courage?" Hmmmmm, well, there is no way I am using "spunky" - my God, if you have lived in the UK, well, that terms means you had sex with an entire dorm floor in one night.
This was absolutely beautiful and very well put. I had tears rolling down my face as I read this. I know where you're coming from because I have shared Some of the same experiences.
Beth -- What anthology? Regarding "twisted" -- *giggle*. As far as inspiration for my students to love biology, that's a WHOLLY different sense. The way the word is typically used around me is, "You're out and about, going to movies and clubs and restaurants. You're such an inspiration!" You know -- the demeaning sense, the implication being that a lot of cripples don't. I'm living my life with the same goals as maybe their sister -- do they tell her she's inspirational?
I don't want to own the word "courage" if the implication is freak. I recognize that not many people with my type of disability can move 1000 miles from home, but a lot of things had to fall into perfect place for me to do it.
Michelle -- I know you have. We all did. Thanks for your sweet words.
Dawn you rock! I think that often when I read your posts on Beth's blog. You are fun, witty, smart and kick ass.
I love the way you live your life as you see fit. Get your degree, go to the clubs, catch a movie... There is no reason for any of us to stop living just because we are disabled.
So if Beth is my sister and you are Beth's sister does that make me your sister?
Cheryl -- Thanks. I forget sometimes that I can be a fun chick when I'm otherwise consumed with read these papers and measure those fish. My friend Liz here in New Orleans would read this post and remark, "I love it when you're sassy!" And yeah, I suppose that would make us sisters. Groovy!
I'm not disabled, but I don't feel any less connected to you.
D, you and I have had some great conversations and you have gotten me through so much...never once did I think less of you because of your disability, and I don't believe I've ever looked down on you for it. I feel like you and I connected on a different level, and I've always appreciated that connection.
If anything, I think you're an amazing woman, and when I talk about you to my family, I tell them that you're so intelligent. You talk about and are doing things that I would never begin to understand. I'm not saying that I'm stupid, but you just blow me away with your field sometimes. And in my thinking, I don't even think about your being disabled.
I love the last bit that you wrote. I think that can apply to more than just disabilities. I would say something very similar, except mine is weight, not disabilities.
I'm not so good with typing out what I want to say, so I hope my feeling got across properly. *hugs* I love you, hun, and I think we made a connection for life. :o)
Beautifully said my darling!! You are a very beautiful person and you say it better than any of us ever could.
Okay, take the close parking spot but I'm still hitting the automatic door from time to time.
Amanda -- I think I know that when you said you don't think about me being disabled, you meant that you don't think that my disability makes me less of a human and less capable of contributing to society. I used to foolishly think that someone saying they "forgot" I'm disabled was a compliment, but I don't think that anymore. I want people to see my disability (of course, who can really miss the 300 pound chair?) and still treat me as though I have a brain and an valuable opinion. I want to be able to go to the same restaurants as everyone else, to go for walk without having to be in the street, to come and go from my apartment as I please. People who don't see the disability (or don't care) keep me from doing these things. So, think of my disability as just another piece of me, because that piece helped shape a lot of the other pieces of me that you like. ::hugs::
Stacie -- Thanks, hon.
Brian -- The only time I really care about the close parking spaces is when it's raining or down here in NO when you can't get one because ABs illegally park in them EVERYWHERE due to chronic selfishness. However, I will not begrudge you the auto door button if you have Sam and/or new baby Bri/Bree in a stroller.
I knew you'd understand what I was trying to get across to you. :oD That is exactly what I feel, I never once looked at you as less than human.
*hugs*
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