Do I look like Yoda? I hope not, I certainly don’t act like Yoda. Update: I have both the emotional maturity and dress sense of a 17 year old, okay! So please, stop trying to put me on Disability Time.
Disability Time is how society assumes that by becoming ill or disabled that you are now patient, ever waiting, mature, looking far into the future, wise and always ready. That’s Yoda. Me? I am the goth version of the girl from Clueless.
Ever Ready: My relationship with the medical system is much like a spy and her controller. I am supposed to sit, all day, waiting by the phone for a call from my doctor, specialist, home care, case manager, medical test booking, O.T., P.T., etc. The phone rings. I pick it up. A voice asks, “Elizabeth McClung?” I verify the code name, they continue, “Medical Imaging, the 11th, 3:00 pm, third floor.” I am to silently pack my gun, a copy of Der Spiegel (spy reading), my Medical Card and go meet my contact.
These days, I am going rogue. I know that I should hang up but occasionally I will break cover and ask, “Just out of curiosity, what test is this?” They stammer, stutter, check the book and say, “CAT scan angiogram.”
“Oh.” I try and remember what specialist might have ordered this, “Is that the one where you put an IV of liquid metal through my heart which makes me feel like my chest is on fire and that I am peeing uncontrollably simultaneously?” (This is a REAL medical test I am having in a week.)
“Check.” They hang up.
Seriously, if I had the energy to sit by the phone all day, wouldn’t that mean I also have the energy to, for example, sit at a bar sipping colourful drinks with umbrellas?
Patient; Wise; Mature: Since my energy patterns resemble a feline (16 hours of sleep, 8 hours of scratching someone’s leg to feed me), I have to take the local disability transit system called Handydart. Regular People buses come every 10 minutes and you decide to go when you are ready (radical concept huh?). Handydart has to be booked at least FOUR DAYS in advance and comes with a 45 minute pickup window; and the trip may take 20 minutes or over an hour. This means, for example, if I need to go buy more batteries for my....um....happy toys, I need to know four days in advance? And the round trip could take three and a half hours? Is the same true for all of life’s necessities: for buying gummy bears; for going to see the Zombie Film Festival, for getting fishnet stockings and a PVC pirate outfit? If I was the type of person who knew what they were doing four days from now, I would have stocks and shares and use words like “maximizing potential” instead of “pretty, mine!”, “dead people are my friends” and running (wheeling) away from home to hide in the video arcade until Linda finds me. I mean, I try to play Lazer Tag in a wheelchair. Does this sound like someone who has developed maturity through disability?
Looking to the Future; Extreme Patience: In a nationalized health care, getting referred to a specialist, getting a test done or (worst of all) needing an actual OPERATING THEATRE for something like exploratory surgery is akin to planning a lunar launch. You are looking at months if not years. My PT told me that my overall diagnosis should be complete sometime during 2009 (true!).
For a short version of disability time, just walk into ER on a long holiday weekend with an infected toe – you will be waiting so long that people will assume you are staff.
My favorite personal UK NHS story was when my GP, after consultation, contacted mental health for immediate assistance. I got a phone call from mental health. They wanted to know was I depressed, severely depressed or imminently suicidal. I said probably imminently suicidal.
Fine, they said, a letter from the local mental health counseling centre should be sent out to me within two to three months.
“So I will get counseling in two to three months?” I asked with a mix of hope and despair.
Oh no, they assured me, the letter would tell me when I would have my assessment for counseling, which with current waiting lists would probably be in six to seven months.
“And if I wasn’t imminently suicidal?”
That would be a much longer wait.
- Six Months Later- (during assessment)
I asked, “When can I talk to someone about my anorexia?”
The Gatekeeper responded, “Oh…not anorexia. There’s only one anorexia counselor in the whole region. That’s a two year wait at least.” She looked hopefully at me, “You don’t happen to be bulimic are you? I could get you to see someone in a few months.”
I had the expression on my face you get after being repeatedly run over by a shopping trolley. “Two years! Do you understand what anorexia is?”
As she gave her ‘my hands are tied’ speech I finally understood that Monty Python wasn’t wacky comedy or satire, but rather a biting in-depth documentary of various British institutions.
Oh Disability Time! Don’t even get me started on how I was given the slap down by medico (medical enforcers, kind of like mob leg-breakers) for suggesting that my home care (“for assisting in independent living”) might come with me when I leave the apartment. Hey, someone has to carry the Starbucks’ frappachinos. This manual wheelchair didn’t come with a cup holder.
I know there is another “Disability Time” which is about the before and now time. Before I used to roll out of bed, brushing teeth while I put my hair in a pony tail so no one noticed how greasy it was. I drank OJ while jumping up and down into my hip huggers and I was outta there: bed to door in 10 minutes. Now that is around 90 minutes. I’ll talk about that kind of disability time some other day, what I want to know is when are 'they' (the society and medical people ‘they’) going to starting thinking about ME. When will 'they' provide an alternative structure for us shallow, fun loving, often impulsive, impatient and high emotional maintenance people with disabilities? Face it, I want to be the medical system’s bouncy, needy and easily distracted girlfriend. “Oh it sparkles, buy it for me?”
I want to know when Disability Time will be changed to meet MY needs. Hey, while you’re here, can you pass me another of those umbrella drinks.
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