大象传媒

• Posted by Elizabeth McClung
• 6 Aug 07, 3:36 AM

People always ask me 鈥淲hen did you have the accident?鈥� which to me sounds as if I am 16, waif thin and obviously pregnant. Oh, you mean the wheelchair! There is no simple answer, but I often think of what was said to Winston Churchill, 鈥淚 believe you are drunk...鈥� no wait, I think it was another saying about a mystery wrapped in an enigma. So no, I am not paraplegic nor did I fall from a tree while stalking the Queen Mum. I have a heart/neuro degeneration thingy. This is uncommon. But then I am finding out that there are many 鈥渦ncommon鈥� medical paths. There is MS, ALS/NMD, Lupus, Lyme disease, Parkinson鈥檚, Encephalitis, G-B Syndrome, Creutzfeldt-Jakob and PML. And these are just some of the neurological; there are dozens of ways to win the disability lotto, some temporary, some permanent. And it isn鈥檛 because you smoked or drank, or stopped too often to smell the roses; it just happens. That really frustrates doctors. Some of my many doctors are convinced that I did 鈥榮omething鈥�, probably 鈥榮omething鈥� like snorting industrial cleaner, to end up like this.

Have we established that I am the 鈥渃ould be any woman鈥� yet? That I was a walking Temporarily Able Bodied and didn鈥檛 even know it? I hope so, because medical talk is dull. What is interesting are all the incredible things people will simply come up and say or do if you are in a wheelchair. Like my first bus ride (actually my second as on the first one the driver refused to pick me up) when I, in wheelchair, am on one side of the bus, and a woman with Down鈥檚 Syndrome is on the other. She is going to work at the Red Cross, I am going home. A 鈥渃aring鈥� woman decides to talk to 鈥渢he disabled鈥� and does the slow, slightly loud 鈥淎nd how are you, dear? That鈥檚 nice dear!鈥� which some people believe to be the universal language of disability. The woman with Down鈥檚 and I are both slightly vexed that 鈥渃aring woman鈥� cannot tell us apart. I am in a wheelchair, she isn鈥檛. She has, as she slowly explains to 鈥渃aring woman鈥� both a job which makes money and a boyfriend (I have a girlfriend and my contribution most days is recycling carbon with my lungs). But 鈥渃aring woman鈥� doesn鈥檛 listen and goes on with the inane questions. So we ignore her and end up talking to each other. It is an easy conversation since she works at Red Cross which loans medical equipment and I have about 30% of their inventory in my apartment. Seriously, the Red Cross truck drivers wave to me as they drive by.

I鈥檓 not going to tell you all about what made me special as an able bodied person because those were the 鈥渂efore鈥� values. Values of a society that I can鈥檛 meet anymore, and got quickly tired of trying to. Now, I try to get outside every day. I try to do some sort of exercise twice a week (currently that is ). I work at not letting how well or bad or in pain I feel on any day or series of days determine my outlook. Still every month there are conversations with my partner Linda like this:

Me: 鈥淚鈥檓 cured! No really, I feel completely normal.鈥�

Linda: 鈥淎nd how long have you been 鈥榗ured?鈥欌��

Me: 鈥淔ive hours.鈥�

Linda: 鈥淗mmm鈥�.鈥�

NEXT DAY

Linda: 鈥淚鈥檓 pretty sure you don鈥檛 want EVERY human to spontaneously combust.鈥�

Me: 鈥淵es I do, I hate them all!鈥�

Linda: 鈥淵ou鈥檙e in pain, aren鈥檛 you?鈥�

Me: 鈥淧ain! Do you know how many nerve connectors go to the spinal cord? One billion!鈥�

Linda: 鈥淵ou want another pill?鈥�

Me: 鈥淜now how I know...I鈥檝e been counting them!鈥�

Linda: 鈥淭ake the pill.鈥�

The other thing I do is try to understand or at least record the way in which I and society bump up into each other. Like how a lot of women are randomly getting all maternal on me. I have 21 year old girls asking 鈥淵ou okay, sweetheart?鈥� This is pretty odd for someone who is over 6鈥�3鈥�, has an athletic build and has been more used to short men coming up and asking me to spank or dominate them. So no, I鈥檓 not exactly 鈥榙elicate.鈥� But when women ten years younger and half my size want to stroke my hand....I say YES and I don鈥檛 tell Linda but I鈥檓 still confused. And let鈥檚 not get into the women five to ten years older than me who hold me and say I remind them of their daughter. That鈥檚 a compliment right, I think?

I shouldn鈥檛 forget mentioning the benefits. As I said today to the woman painting the henna tattoo on my body, 鈥淭he old rules don鈥檛 apply.鈥� There is nothing like traumatic life-altering medical problems to help demolish that mental 12 volume set of 鈥淲hat Good Girls Do.鈥� Are all girls who wear thong underwear really tramps? Let鈥檚 order some and find out. A lot of my social concerns disappeared once I had something nastier to fear. I dress goth now, or wheelchair goth (always thought it was cool, always too scared to try). My female physiotherapist calls it 鈥減rostitute wear鈥� after I showed up in a miniskirt asking her to alter my wheelchair footplate for high heeled knee-high boots with buckles (PVC boots). But hey, she was the one who told me it was 鈥渋mpossible鈥� to wear a miniskirt in a wheelchair. That鈥檚 a challenge, right? Besides, her 19 year old daughter comes to me for fashion tips. People will try and tell you that 鈥淛unior miss鈥� sizes are not for wheelchair women in their 30鈥檚. I disagree; my clothes come from Sweet and Toxic, Morbid Threads, Slash N鈥� Burn, Arsenic, Lily and Remains, Trick Fairy, Kill City, Darque, and Demonia. Plus I have a vampire teddy bear in his own mini velvet-lined coffin. Cool, huh? Remember: the old rules don鈥檛 apply.

So that鈥檚 it; the quick 101 on Elizabeth McClung, disability blogger. I hope you weren鈥檛 looking for dignity or sensitive insight. Good.

• Visit

• Permalink
• Comments

< Previous Main Next >