Ouch weblog: individual blog entry
5 Sep 07, 8:15 AM - Yoda, drinks with umbrellas and Disability Time
Do I look like Yoda? I hope not, I certainly don鈥檛 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鈥檚 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, 鈥淓lizabeth McClung?鈥 I verify the code name, they continue, 鈥淢edical Imaging, the 11th, 3:00 pm, third floor.鈥 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, 鈥淛ust out of curiosity, what test is this?鈥 They stammer, stutter, check the book and say, 鈥淐AT scan angiogram.鈥
鈥淥h.鈥 I try and remember what specialist might have ordered this, 鈥淚s 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?鈥 (This is a REAL medical test I am having in a week.)
鈥淐heck.鈥 They hang up.
Seriously, if I had the energy to sit by the phone all day, wouldn鈥檛 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鈥檚 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鈥檚 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 鈥渕aximizing potential鈥 instead of 鈥減retty, mine!鈥, 鈥渄ead people are my friends鈥 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 鈥 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.
鈥淪o I will get counseling in two to three months?鈥 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.
鈥淎nd if I wasn鈥檛 imminently suicidal?鈥
That would be a much longer wait.
- Six Months Later- (during assessment)
I asked, 鈥淲hen can I talk to someone about my anorexia?鈥
The Gatekeeper responded, 鈥淥h鈥ot anorexia. There鈥檚 only one anorexia counselor in the whole region. That鈥檚 a two year wait at least.鈥 She looked hopefully at me, 鈥淵ou don鈥檛 happen to be bulimic are you? I could get you to see someone in a few months.鈥
I had the expression on my face you get after being repeatedly run over by a shopping trolley. 鈥淭wo years! Do you understand what anorexia is?鈥
As she gave her 鈥榤y hands are tied鈥 speech I finally understood that Monty Python wasn鈥檛 wacky comedy or satire, but rather a biting in-depth documentary of various British institutions.
Oh Disability Time! Don鈥檛 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 (鈥渇or assisting in independent living鈥) might come with me when I leave the apartment. Hey, someone has to carry the Starbucks鈥 frappachinos. This manual wheelchair didn鈥檛 come with a cup holder.
I know there is another 鈥淒isability Time鈥 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鈥檒l talk about that kind of disability time some other day, what I want to know is when are 'they' (the society and medical people 鈥榯hey鈥) 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鈥檚 bouncy, needy and easily distracted girlfriend. 鈥淥h it sparkles, buy it for me?鈥
I want to know when Disability Time will be changed to meet MY needs. Hey, while you鈥檙e here, can you pass me another of those umbrella drinks.
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At 10:29 AM on 05 Sep 2007, Dave Hingsburger wrote:
"Pretty, mine!" I burst out laughing at the perfect description of how I like to shop. The idea of 'Disability Time' is perfect ... everything does move differently in time. Brilliant piece. By the by, no one ever mistakes me for Yoda, primarily because I look a lot like Jabba the Hut ... handsome devil.
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At 01:29 PM on 05 Sep 2007, wrote:
Great post... the one bit that doesn't quite ring true to me, tho is the NHS reaction to the words "imminently suicidal".
In *my* experience, your description of months or years of waiting lists is very accurate for trying to get any kind of non-drug therapy (counselling, psychoanalysis, etc) for depression - UNLESS you mention the "S" word. If you do, then *instantly* they will send an ambulance, possibly accompanied by large numbers of police, round and you will be forcibly drugged and dragged off in it, to be put "for your own protection" in an institution that you may never win the legal right to get out of.
Despite all their so-called "lack of resources", they seem to have plenty for punishing people for the "thought crime" of considering voluntary death as an option...
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At 05:49 PM on 05 Sep 2007, Rachel Officer wrote:
Good grief, this was so accurate, but is not just about being disabled. I can remember getting very stroppy when I was pregnant and insisting that I couldn't make a medical appointment because I had another appointment (Hair appointment). Their world nearly ended. Medical people in general seem to think you have nothing better to do than sit and wait around for them and that when eventually you do get an appointment, you will be so pathetically grateful that you'll move heaven and earth to attend. This applies if you are non-disabled, disabled or a carer.
Best example was when I asked for an appointment after 4pm - and was asked if 2.30pm was ok. I've never worked out by what time keeping that is after 4pm.
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At 05:51 PM on 05 Sep 2007, wrote:
Dave - thanks, I have honed my lust for sparkly and shiney things to a fine art.
Shiva - it is true that S word (Suicide) in North America gets you lots of attention, often unwanted, however as I found in the UK, at least in my NHS area - it meant relatively nothing at all - that anecdote is true, Linda was there - they might ask, "Do you want to be assessed for being sectioned" and if you said, "No" then they were like "Okay." - I had a student who heard voices and his GP told him "That's not significant" and gave him a pamphlet (which he showed me), on Support for people who hear voices. While in other parts of the world that gets you immediate meds if not sectioning.
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At 12:15 PM on 06 Sep 2007, wrote:
Brilliant post.
The NHS is incredibly inflexible about appointments. Hospital clinics are normally on a fixed day of the week and only held between 9.30 am and 3.30 pm meaning if you are randomly allocated an appointment it usually means taking the whole morning or afternoon off work.
By the time you get to phone them back to rearrange it to a more convenient time, the next available date is another three months in the distant future.
Some employers can be equally inflexible about time off, giving you the third degree and asking for your appointment letter from the psychiatric clinic as evidence. Yeah right, like I'm really going to show you that.
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At 02:10 PM on 06 Sep 2007, wrote:
I wasn't trying to say your experience wasn't true - just that it was, IME, *very* atypical of the UK NHS. Things might vary from area to area...
I know one person who posted on a messageboard i used to post on (guess why i don't go there any more) that she was considering suicide. The webmaster of that board tracked her down by her IP address, called the police, they broke down her door to get into her house (finding her sitting at the computer) and she was sectioned. You, i think, were very lucky...
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At 07:05 PM on 06 Sep 2007, wrote:
Eating disorder therapy in the UK is just atrocious - one half-hour period per MONTH, just about long enough to argue about weighing me with my shoes on or off... That's definitely Disability Time! Got an illness that took years to develop and stagnate into a whirling pool of crazy in your noggin? We'll ... Sort something out for you. When we get round to it. The NHS is actually run by Microsoft...
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At 01:19 AM on 07 Sep 2007, Kate wrote:
that was funny but also quite horrifying! why is it so bad in the UK? thank goodness i live in australia and have private health insurance. about half of all australians have private health insurance and our public system isnt great but not as bad as yours.
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