Tuesday, January 15, 2008

Fortune Cookie Omen's, a surprise (naughty) gift and dying by fire!

This weekend we got some Chinese takeout in an attempt to “lighten the mood” and at the end of the meal, Linda was in the kitchen and I was in the living room when I opened my fortune cookie. “Linda, can you come here?” I said an odd deadpan voice.

She came.

“What did your fortune read?”

She read: “Soon your kindness will be rewarded at work.” She looked at the paper I was holding, “What does your say?”

I handed the paper over, “You read it.”

She read it. “Oh.”

“It’s the Fortune Cookie of Death.” I said.

“Um…maybe you could look at it another way.” Linda tried to cheer me up.

“What other way! It is what doctor’s tell you. Hello! How more explicit can it be? Why is it you get, “kind, reward at work” and I get, “You will die!”

“It doesn’t say that exactly.”

“Close enough” (the fortune cookie is here: tell me, who would make this as a fortune?)


Needless to say we are not getting Chinese next time.

In better news I received a mystery gift in the post: My home care worker with the pierced tongue was here and I shouted for her to quick, quick bring some scissors so could I open it I suspected what might be inside!).

I pulled it out in all its magnificence. “What is it?” the home care worker asked.

“It’s my vibrator bag!” I stated proudly.

“Cool, I want one!” she said, “I can’t believe someone actually MADE you a vibrator bag.

“Me either.”

The back had some buttons on it. One read, “I have animal magnetism: when I go outside squirrels stick to my clothes.” And another read: “Speak your mind, even if your voice shakes.”

My home care worker said, “Someone REALLY knows you.”

I just grinned and chortled. The bag is by Sara of Moving Right Along and I know she sells crafts so if you need a handy and stylish vibrator bag for keeping them organized and out of sight of home care OR for handy travel trips, I would talk to her. It is not subtle or something your mother would approve of, another two big pluses in my mind (kind of just says to the customs agents ‘open me, I dare ya!’).

I am keeping on in getting to the meetings, another one tomorrow at 10:00 a.m. which is terribly important and could determine my care for the next year. Which means I can only swear under my breath.

Today I went to Triumph, the disability employment assistance something (the government pays them to get people with disabilities OFF of disability by getting a job – but they seem to freak a bit with people who have, like, serious physical disabilities). I had to do 10 pages of paperwork and sign all these sheets which included a sheet that I had been instructed what to do during a fire (exit the fire exit and wait at the meeting point which it happens, is the second oldest cemetery in Victoria). I asked, with the center director in the room. “Um, is the fire exit wheelchair accessible?” There was about 90 seconds of silence before the director said, “No, no it isn’t.” Then I signed to say I had been completely informed of fire safety regulation.

Errr....the director and eventually the head director of the entire region were called into the room because I wouldn’t sign the forms. There were a host of reasons.

Reason 1: On the confidentiality page there was no guarantee that my confidential medical information would not be passed between members of Triumph who were not directly involved with my case. The director of the center said, “But it already has been passed on to different members; the person who checked it from intake, the person who inputted it into the computer, the person who evaluated it for your case manager…” She pulled back and did the government speak, “Triumph is entirely a voluntary program and if you are unhappy with how things are being done you are free to leave at any time.” Oh yeah, that might have scared me nine months ago the first time I heard that implied threat.

I countered with, “Well, passing on confidential medical information is illegal, whether you have already done it or NOT, and the fact that I am here voluntary has nothing to do with that.” (an additional line was added in by the director to hold each member of Triumph personally responsible for maintaining confidentiality).

Then there was the line: At Triumph you will be not discriminated on age, race, gender, sexual orientation or religion. I know the list because it is the list of human rights which can be prosecuted by police in the province of B.C. They wanted to know why I wouldn’t sign. “You need to add ‘disability’ to the list. It needs to read that I won’t be discriminated on the basis of my disability at Triumph.” The director of the center looked at the region director so I said, “You ARE an organization to assist those with disabilities right?” Apparently no one had thought to add it (and I was the only person in over a year of their existance to notice). At that point they changed my case manager to M. who is “more experience with people with physical disabilities.”

She knew me, I liked her, I grilled her anyway. Well actually I was grilling the regional director on how or could Triumph could apply for the Federal Opportunity Fund so I could get a grant to write a book on the first year in a wheelchair. There were stammers from the director. M. said, “What about blah blah fund.”

I looked at her, “Never heard of it.” To me this is a GOOD thing, the reason I came to these people it the first place.

“Oh, they are a good source of money for grants like that.” YES!

When the two directors left the room she asked in a whisper, “Do you have a crap computer?” a pause, “Cause I can get you a better one…for free.”

Suddenly I was like M. a LOT MORE. Particularly when she told me that she would get me a copy of Dragon Voice by Friday so I can keep up with all these people who email me by talking while I have to respond by typing with one hand. Only down side...I have to fill in 14 MORE pages of paperwork to take back to them by Friday (that is TWICE the amount in order to be listed as a Person with Disability at the Federal level in Canada.....just mentioning.)

So exhausted and still have many, many meetings but it turns out being ornary sometimes gets rewarded by getting the person who actually knows how the pimp the system instead of waving the row of medical trucks to roll over you.

Still not sure exactly what I am supposed to do in case of a fire if I am there. Die I guess?

25 comments:

lilwatchergirl said...

I am so impressed that you got that many changes added to the forms. Good on ya.

And YAY for screwing the system. I reckon it owes you. :D

Hermes said...

Good for you. They are too used to 'grateful' (if only they really knew their feelings) disability receipients who take their shit and don't complain.

Heather said...

Dear god. Maybe they should apply for a grant to get a suitable fire escape installled?

elizabeth said...

SERIOUSLY. Who does write a fortune cookie that says that?? That could only happen to you - blog material and all. ;-)

Love the vibrator bag. I feel so left out. Maybe for my birthday.

Lene Andersen said...

Heaven help us. Not that I'm religious much, but it's the only thing that fits. If I could get my hands up to my head, I'd be tearing my hair out. CanNOT believe the insanity (well, I can, because I have memories of similar insanity, but I prefer to repress them). So glad you got stroppy! And that you found someone who a) knows what they're doing; and b) willing to do it.

Re: the fire thing. Back in the days when I worked in an office, we spent a long time figuring out the procedure on what to if I wasn't on the ground floor in case of a fire. Found out that the Fire Dept will rescue, but not evacuate, so essentially, this meant I'd have to sit on a staircase landing, waiting until the fire was bad enough to warrant rescue. Very reassuring. For weeks, we made bad jokes about being toast.

p.s. love the bag.

saraarts said...

(Sorry if this is redundant. Google ate my first attempt to post, and with the expectation that that has now gone off irretrievably into the ether, I have taken the liberty of reconstructing. If I'm wrong and you end up with both, please just pick the one you like best and discard the other, with my apologies.)

I am just SO GLAD that thing finally got to you! I am also very glad you like the buttons. I was (and still am) looking for another copy of the black "I do all my own stunts" button with the skull and crossbones on it, but meanwhile I found these irresistibly appropriate, too. :)

For the record, you won this as a finalist in my very silly Second Annual NaBloPoMo Midway Contest. Also, you told me what you wanted, including dimensions and style notes, so you deserve concept credit and at least partial design credit, too. So if this ever does become a lucrative product for me, I shall have to find a way to slip you some royalties or something. :)

Now about that fortune cookie. Understand that I am only pointing this out in my capacity as eccentric aunt, but Linda is perfectly correct; there is another way to look at this.

If one is to believe the omen-casting power of fortune cookies, then it makes equal sense that one should also believe in astrology. According to astrologers, the planet Mercury rules communications here on earth at every level -- not just how we talk to each other, but things like contracts, applications, and other paperwork. When Mercury goes retrograde, that is, appears to travel backward because of an optical illusion of genuinely astronomical proportion, astrologers tell us that all that stuff gets ridiculously fucked up down here on earth.

Mercury goes retrograde a few times a year for a few weeks at a time, and astrologers warn that the effects can be felt sometimes for weeks in advance and/or for weeks after. The next time Mercury is scheduled to go retrograde will be January 28 through February 18, 2008.

So, given that, I'd say the fortune cookie meant to be quite helpful. In its own way, in its own little universe of magical objects and interplanetary influences over strictly terrestrial minutiae, it was just giving you a little reminder memo, nothing more.

Finally, I love, love, love the Triumph story. I love that you took them through all that, and I love that you might actually get rewarded for it with some concrete assistance. You rock, and you deserve good things.

glassroses said...

I've been known to protest forms as they're written, too. Not sure if other people don't read them as carefully or if they think there is just no choice. Good for you--that changes things for other people, too.

One office's forms automatically said they'd send info back to the employer (must have had lots of workers' comp claims). I x-ed 'no' all over that puppy and made sure from them that they wouldn't.

Disability is never included in the discrimination statement. It's maddening. With some employers (current), I assume it's because they do discriminate against people with disabilities. "I'll get back to you" is a convenient, indefinite kind of statement when you need access to something or a reasonable change, such as a door lock that's lower than 5 1/2 feet high on the disability-access restroom stall.

In a lot of buildings the escape route for people with disabilities is to park their wheelchair in the stairwell at the top of the stairs.

Good for you. I hope that will also change things for other people. Oh, no, people who think and ask questions... ;)

glassroses said...

PS. What kind of nutso fortune cookie writer would write something like that? Must have been having a bad day.

alphabitch said...

That is totally freaky about the fortune cookie. I mean, it's the kind of advice that's always true and a good idea, but it's only slightly ominous if you're not, you know, seriously ill.

I love it that 'disability' was not on the list. I sometimes teach a workshop in how to design forms, and it's amazing what people leave off sometimes. I will add that story to my collection of examples, if I may.

But I'm heartened to hear that you've finally crossed paths with someone who is more than a mindless automaton of a bureaucrat. And the book grant sounds like a great idea.

ms bond said...

1. You have to add the words "in bed" to every fortune you get. If you do so then your fortune reads "Now is the time to resolve all unfinished business...in bed". And that just sounds like a whole hell of a lot of satisfaction and goes hand-in-hand with...

2. Awesome bag. And you can think of squirrels while enjoying...nevermind.

3. Wow. You are my hero. Not only did you ask the right questions but you actually are getting cool stuff. Really...do they ever think about disabled people when they design fire exits? I mean it makes sense to shut down the elevators but is the purpose to kill off all wheelchair users? Ok...ya gotta choice. You can either suffocate from smoke inhalation while burning to death or you can break every bone in your body while slowly tumbling down multiple staircases. Ya wanna third choice? Throw yourself out of the window....aim for the grass...blood is hard to wash off pavement.

Elizabeth McClung said...

To be honest, the part about the "fire escape" that perplexed me the most is that Triumph is on THE GROUND FLOOR - so they must have some steps at the fire exit either up or down - it isn't like the third floor or anything, so yes, maybe a grant for them to get a wheelchair accessible fire exit would be good!

Veralidaine said...

Hurray for the new voice software! Does this mean we can expect multiple entries a day? ;)

And Ms. Bond, I always did the same thing, but with "between the sheets"- only slightly different.

...I guess unfinished business between the sheets could be dirty, or it could be that you lost your favorite fuzzy socks in there while tossing and turning and still haven't found them...

Lene Andersen said...

Ms. Bond - I suspect your question regarding whether the goal being to kill off people with disabilities is rhetorical, but so, so much could be explained by a secret policy of culling the herd.

Not that I think too much or anything...

Gaina said...

I liken that kind of message in a fortune cookie to the 'Death' card in a Tarot reading - it freaks people out but it's acutally a good card because it means you're moving forward and shedding things that are no longer of use to you.

If you keep going at 'The Man' like this you're going to get yourself a job as an advocate! You'd be perfect for it :).

I'd relay the story of my skirmish with Motability yesterday to you, but I'm a bit too frazzled just now. Might blog it on Friday :).

I think the fire exit thing is the same reason you can't get a wheelchair in a nuclear fallout shelter or get a seat on the plane next to the emergency exit - a polite form of ethic cleansing. (Half joking! hahah)

Elizabeth McClung said...

lilwatchergirl: Well, only to MY forms, but it is a start - and yes, I plan to take the system for all it is worth (and distribe it too maybe, a modern disability robin hood)

Hermes: Well, I did say when I came into the room, "Hello, it's trouble again." And the first form had at the bottom page 2 of 4, the second page had 'page 4 of 4' - the asked, "Any questions?" So I said, "Where are the other two pages?" And they say, Uh, they were cut but head office makes the copies (one other person at the meeting who was on disability said, "Gee, you're smart!" (because I can count to four?)) - so I said, "How about an immediate turn-around on disability employment and you subcontract me to repaginate your document?" Answer: No.

Heather: Yes, I am ALL for this, especially as Linda told me at the uni in cardiff just HER building had two "escape walkers" for people in wheelchairs which sort tank-tread down the stairs - and this building Triumph is on the GROUND FLOOR.

Elizabeth: I have been getting depressing fortune cookies for years like, "Friends will turn against you." or "Now is not the time to try anything" but this was so....blunt! Yeah, contact Sara - it is the perfect birthday gift!

Lene: Well, I didn't go over the BIG one where they tried to boot me because I asked, "When do you get paid, for each meeting you require me to attend or when you find me a job" The director was, "This is a business and I don't have to divulge the business practice to you and you can leave if you are unsatisfied (hint! HINT!)"

So I said, 1) You are paid my the ministry of income and assitance, so you are a subcontracted public servant which means that "I" pay you, and as you point out, you are a business, so since the ministry is representing ME, then I think I shoudl know what incentive you have: to have me in meetings or to get me a job - is it pay or play? (meaning you don't get me the goods, you don't get the payout) - that went over like a sack o bricks.

Re fire: Linda said the UK university she was at when making the regs for evaculation found the exact same thing - firecrews will only rescue, so each building/department bought a stair walker and the first aider on duty was notified of all people in wheelchairs in the building to ensure proper evacuation of ALL people.

Me, I'm just still shocked that the fire crew has to WAIT until you are in danger before they do anything.

Sara: I really like the bag and VERY much like the buttons and show it around and people here seem insterested so I hope it is a rocking seller for you (Everyone GET your ORDER in before Valentines Day!).

I like your explaination of how there is another explaination for it, which would be great if I had the slightest clue what the date of the month was (I was in a meeting the other day and people talked about how hard it is to remember to put on checks that it is 2008 and I thought to myself, "Take a note....It is 2008!")

Well, I am hoping that things work out and in a week or two I will have a better idea of whether M. is the person for me and hopefully she is and we can get a grant and go and DO something instead of going to meetings, and more meetings...and more paperwork.

Elizabeth McClung said...

Ms. Bond - exactly, I mean they wanted me to sign at the bottom of each form, for some liability thing right? But I am not expected to read them?

I too wonder why they wouldn't automatically put it in unless they were keeping thier options open, like there was a REALLY bothersome disability...then they could discriminate; or as you point out, just DELAY on making needed building or policy changes.

Another fire story: I worked at a multiplex as sort of senior events planner thingy and in the building was a room which was for wheelchairs and was supposed to be heat proof and hold 24 hours of oxygen. I was the person who instructed that each person assigned a screen was to bring the person/s in a wheelchair/scooter in the Safe Zone and STAY WITH THEM. Inevitably, there were at least 1 or two poeple in each group who would say, "But I don't want to stay with them."

And I would say, "You are staying with them a) to keep them calm and b) to show the interests of the company in keeping ALL our patrons safe"

And they would say, "But I don't WANT TO DIE!"

And I would squeeze that space at the top of my nose and say, "Nor, I think, do the people in the wheelchairs and scooters who come here to see a film, and if you rush them in here and then RUN OUT while yelling how you DON'T want to DIE....maybe they won't feel very SAFE or SECURE here." (ironically, for a book I am working on, I have figured out how to easily kill about 2,800 people in a 12 screen multiplex cinema with a fire, however, killing the people in Wheelchairs in the Safe Zone is virtually impossible, I have been thinking for a couple years on how to do it - but maybe it would make a better book in only the people in the safe zone survived?)

Alphabitch: It was one of those moments when I felt the fortune cookie was actually TALKING TO ME!

Please use the story in your workshop, I will check on the table and see if I brought the form with me home (I doubt asking them for a copy now would make me popular).

Yes, the grant, as I said the case manager at Triumph, working for three hours a day on a book while BEING PAID seems far more attractive use of my waning energy than just working three hours on a book each and every day.

Ms. Bond: I will have to go back to the rest of the fortunes we have had and see how that works, I imagine some of them could be quite rude "A friend will show you thier appreciation"......in bed!

My advice on saving yourself in a fire is just grab onto the highest manager you can find; they don't get that high up without some pretty strong survival skills so I think if they have to leave a burning building dragging a clinging person with them...they will.

I do like the throwing self from window, just for the aethetics.

Veralidaine: No, but maybe I can spend more time outside doing more exciting and dynamic things so that the blog entries have zip and vim and all those sort of words.

Between the sheets - what a good name for a memoir!

Gaina: Oh good, I need to shed some stuff, leave behind some mental baggage.

As for the advocate, I think the all know to run now; except the two "Case managers" from VIHA (the one we were trying to reach for months and scheduled the meeting.....didn't come). Afterward, with the NEW case manager looking a bit shell shocked Linda said, "I thought you said you WEREN'T going to do much talking today."

I winced, "Yes.....but....but" (Oh, I really grilled her - but as I said, "See, once all this is resolved, then I won't call you for a LONG, long time" - I like to give them an incentive.)

I'm looking forward to the story of your mobility - and I think you are right, eveyone is so worried now about liability that they forget the purpose of human dignity and equality (Wheelchair dancer has a good post from last month when the airline people threated to call the police and fire department to remove her from the plane because.....she wanted to use her wheelchair to leave the plane on her own (insert ominous music here))

Daniel, the Guy in the Desert said...

I'm somewhat in awe of your ability at calling the bureaucrats bluffs...That's sounds like a good name for a game, doesn't it?

Daniel, the Guy in the Desert said...

Oh, and cool bag. I'm always losing my vibrator, you know.

Marla said...

I can not believe that fortune cookie. That is just too weird. I did not even know they printed ones like that.

Tom P. said...

Great entry! I had to read the Triumph stuff to Michel. We were both laughing. Michel's short term disability ran out so she is now in the process of filling out the thousands of pages for permanent disability so she appreciated what you went through.

Lisa Harney said...

The next time you say that you aren't able to advocate on any level, I think you should come back here and re-read this post. Yes, this is self-advocacy, but it has the potential to positively impact others who enter Triumph after you.

I don't know if it will, obviously, but if you can get them to go as far as even adding a gorram ramp to the fire exit, that's something.

Whoever wrote that fortune is an evil person.

Elizabeth McClung said...

Daniel: It does sound like a good game....if only the stakes weren't so high. And I recommend maybe getting a "clapper" for your vibrator if you can't buy a bag from Sara. (Clap and it whistles or something?)

Marla: Yeah, the guy at the fortune cookie factory was having a BAD day.

Tom P. - Well, I am glad that you and Michel find it amusing even in what must be pretty darn frustrating times yourself. I did pick up the 14 pages and it is full of things like: List all known conditions and symptoms whether occasional or frequent (and then leave a two inch box - hahahahaha.....sigh!)

Lisa: Oh, this is advocacy? I just thought this was putting the fear of red heads in wheelchairs into them? I do hope they change things, if repeated sarcastic comments are any help, I am sure it will be speeded along.

KateJ said...

Well, I hope you get to write that book. I'll certainly buy it,so put me down for one. And that you get a substantial grant for it... and that it goes on to win lots of prizes.

Zephyr said...

Oh My God, what the fuck is up with a disability agency that is so clueless about disability!

I have Dragon too. Haven`t used it much.

Lisa Harney said...

You're trying to make them change stuff, at least for you. And they are, at least for you. That may ease the way for the next person (hopefully).

So, it's totally advocacy! Even if you're not explicitly saying "You need to do this for everyone," they'll probably get that message.

Of course, they may just dig in their heels for the next person, which just shows they're assholes.