Friday, January 18, 2008

Betrayed by govt (again!), I need some sympathy sex.

I put two fingers on my chest, “oaffarrs”

Linda was leaning over me, as I was struggling to breath, “Two offers?”

I nodded, “Exxx!”

“Sex?” Linda asked in a “what the?” voice.

I grinned and nodded my head.

My care worker, H., who was currently holding my body so that I could take in air, said in a ‘I’m going to kill you later’ voice, “Only you!” before laughing. She had previously told me that she would get me breathing again and then, MAYBE, I would be allowed back in my chair and if I didn’t come to go to sleep when she told me, she would throw me over her shoulder and carry me off to bed. Sounded like a pretty darn exciting offer to me. So I was giving my, “What can you do to the cripple?” grin as H. (VERY heterosexual) was explaining this (with dagger looks at me) to Linda. Sex tends to be a common conversation in our late night sleepovers for some reason; her and her romances with tall broad shoulder men and me showing her the manga porn girls that my publisher had sent me as a “get well present” (more on that tomorrow).

Linda meanwhile told how coming back from boxing, she had a mix-up of words and offering to push me through our horrid hallway carpet we call “the quicksand” she looked back to me and ask, “Should I do you?”

I paused the half second for it to sink in and then started nodding eagerly. Linda was, “You know what I mean?”

“No I don’t,” I protested, “There haven’t been enough offers like that recently.”

Anyway, being thrown over my night care workers shoulder and carried off to bed competing with Linda wanting to “do me!” was sounding pretty darn good. If you can’t make sex jokes while unable to breathe, well, I guess you’re not me.

Lots of problems breathing last night and this morning I was woken by the phone ringing and ringing (you know those ones where after 20 rings you think maybe they ARE important). “Heeeeeello?”

There was a crisp voice on the other end, “This is the MRI department; do you have any shards of metal in your eyes.” God, this is why I struggled to get the phone? Why do medical departments call so early?

I was in slo-mo today, getting up late and by the time my home care worker came, I was still working on contacts, brushing hair, getting dressed etc. My regular wasn’t there and there was a woman from several months ago who excelled in what we in the medical home-care industry call: being lazy.

First she came into the bathroom to ask me, “Where is your dishwasher?” I rolled my eyes and prepared to laugh until I realized she was serious. “There is a tub under the sink.”

Well, once I got dressed and in the wheelchair it was, “You have some sort of party? What are ALL these dishes?” I also found out that she was there because my Home care agency is closing in Feb., so everyone is calling in sick, including my evening worker from yesterday (who called in sick, a replacement was assigned who never showed). When this worker, K. found that my regular overnight worker was there last night, she got really angry. “How come she be here so many hours and not do the dishes!”

I told her that my overnight worker, H.’s job last night was to keep me breathing, and that she couldn’t do that AND do dishes. “She should do them later!” K. stated.

“It was after 11:00 p.m., my partner was asleep.” I told her.

“Should have done them anyway. I would have.”

“Well, doing the cutlery at 11:30 p.m. next to someone sleeping, must be a delight.” I said. Sorry, but when the woman who has kept me from going to the hospital at LEAST six times gets slammed because keeping me breathing for two hours when I couldn’t do it on my own seemed more important than doing dishes, I get a bit stroppy.

The care worker couldn’t find anything for me to eat so I got my gatorade and then after being there 30 minutes (she is supposed to be there an hour), she started heating up her OWN lunch in our microwave, while telling me how much weight I had lost since she had seen me last. “Yes, I keep losing weight.” I said. And she told me to make sure not to lose any more, took her warmed up meal and then left. Okay. That was surreal.

I had to back to Triumph for my interview with M. my “employment case manager.” The first words I told her were, “I want to leave here with Dragonvoice 9” (where you speak and it types it for you, slurring or not). She had told me should/could get me DragonVoice the first day. That was all I was coming in for. Well, it turns out not to be that easy. She needs to call some government department, (EES?) and I have to be assigned a case manager there. We are hoping for Bruce, but I get Lynne, who it seems won’t do anything unless ALL the paperwork is done perfectly. Lynne talks to us but says she will call next week “once she has the paperwork” and then we will see. M. tells me I have to call Lynne every day. I tell there is usually a list of people I spend most of my day calling to try to move things along and Triumph is one of those places. She goes off to fax the paperwork and I notice there are pictures of M. with a baby, then a little girl. So when she returns I blurt out, “You progenitated?”

There is some nervous laughter about yes, I guess she did. I just think about how I am mucking about in this medical stuff and how Linda and I talked about it last year and here she was replicating herself. Before you classify me in the weird grouping, she looked at my birthday on the chart and laughed and said, “A typical Taurus.” Eh?

Anyway, after an hour my feeling is that like every OTHER group to do with government, I go to meetings, M. is paid to do the meetings but is paid nothing to do work for me in other capacities while I am away. So I am the one who leaves being told to “write a letter to the Rick Hanson Foundation for a grant” after being asked, “Why not write pamphlets for new Neuro wheelchair users?” So, I have another octopus: I have to do all this work while they get to assess if I have done enough. Crap on that. I HAVE a damn good resume and would have a $45,000 job if I decided to “settle” and just take something like clerking if I wasn’t, you know, disabled (and unable to work full time). And the corporation who is paid to help me get employed needs to understand that I don’t need help with a resume/CV (I gave them one of mine today). What I need is someone who can go out there and sell me in a marketplace and country which not only doesn’t seem to like part time employment but actively discriminates against disabled employees (legally!). That is the ‘accommodation’ I need because if I was NOT disabled, if I was strong enough to spend hours a day searching this, then I wouldn’t need them, I would HAVE a research or teaching job. I was infuriated that I had been sucked into at least four meetings on the promise of individual advocacy for my by a pro WHILE I was sleeping and getting medical tests so I could work when I was not. And instead I get told to go cap in hand myself.

By the way, the reason I told her I am not doing pamplets is that I have as much impact as I can hope or desire in the now with my blog but that in a short time, I will be gone, and the blog will wash away with the tide of internet time. I want a book so that the next person, so every person who cares can know what it is like emotionally and socially to be in a wheelchair and the medical system during the first year. The year you think “this isn’t me” and “Who am I now” and “Am I sort of pretending, I’m not a spinal cord injury and I’m not really THAT sick yet” and “I’m sure this next test will show what the problem is, and I won’t be using this, I’m not like those people who are ‘wheelchair users’” and “For gosh sakes, it has been over 100 tests so far, when are they going to find something, or when are the doctors going to start agreeing?”

So, it was all, “It is 3:00 on Friday, you need to try again Monday” because apparently being degenerative only occurs on weekdays for diseases? You may guess that I am not amused. I’m not: I was stopped from entering a disability advocacy office because I was told, “We’re closing.”

I looked at my watch. “At 3:30”

“We close at 4:00 but we like to leave early on Friday.”

“Of course you do.”

I really wanted to believe for once that you could go into a government or subcontract government building and walk out with a disc instead of TWO case managers, a prospective phone interview, and two more appointment times to meet with M. M, who has not asked for my writing portfolio or anything and I think has no real contacts with employers but like the people there who do 1 hour sessions on “Writing a Resume” at the end of the day it is all up to me. Well if so, why didn’t they say so up front and I could have been spending all that time…I dunno, FINDING a JOB instead of trusting that these people would make reasonable accommodation to help me in finding one. I have the energy to go out 2 to 3 times a week by myself in the wheelchair: this week 2 of those were to Triumph. Was that a good investment in mobility?

Well, that was one long whinge wasn’t it? I just don’t know what to do, I mean, besides having to be monitored by the freaking minute on breathing last night, I STILL made my deadline only to find out this morning that my editor is on vacation until next week. Just wondering, do disabilities get vacations, or only when you get a job? Sorry, it is just that I literally worked myself until another attack, then slept, then got up, explained to the person making $20 a hour that we don’t have a dishwasher. Then went to be told that I have to have another interview and more appointments and I have no disc, no software, no computer (much less leads on work or inquires on my behalf with local papers or magazines). It is just that I don’t know if I have enough endurance or energy to fulfill all the demands on being disabled until something finally happens.

I am so fucking tired of able bodied people putting me in disability time.

I think I really do need that sex. Pretty badly.


Gaina said...

Is this speech software A.K.A Dragon Nuance 9? It's £60 from Amazon for the 'preferred' edition and £40 for the 'standard' edition in England.

I never understand why you can't just say 'look this is what I need and this is where I can get it for the best price, I'll give you the receipt and you pay for it'. Government officals always want to go to the 'fart end of a fart' and do things in such convaluted ways, it's infuriating!

And no, even the AB'd with the best intentions in the world have NO concept of DMT (Disabled Mean Time) and that it can shift from one day to the next.

kathz said...

I can't think of anything good or witty to say about all the awful things you are going through - besides, you (being amazing) still manage good and witty. I hate the way that people who are supposed to help you have been sucked into this big bureaucracy and act like automata instead of proper human beings. I hope you soon encounter someone who can act like a human being and treat you as a human being. Very best wishes to you both.

Raccoon said...

Nuance Dragon NaturallySpeaking 9 is what I use. Don't get the "standard" edition. If you like using a lot of medical or legal terminology, you need the "professional" version.

Talk to me privately about this.

Elizabeth McClung said...

Gaina: yes, it appears it is, and now that I see it is a piece of software for that price, I really am paying quite a bit by the hour for it.

Kathz: Yes, the problem is when you start using the 80/20 rule on people and government and when people with disabilies in particular are not the same, or anywhere near the same in the minuta of thier specific needs and they try to make fit all forms and demand paperwork and more paperwork when perhaps by definition the person is too disabled to endure the process to get the help from the Ministries set up to thoeretically help them (or employ several hundred able bodied people, it is hard to say).

Raccoon: Yes, I want the 9 professional but am now realizing I will need a significant computer upgrade to use it correctly - I would like to speak with you, can you email me, it is on my profile page for the blog?

Lene Andersen said...

I'm beginning to find your experience with the disability bureaucracy (a.k.a. hoops) incredibly fascinating. Your description of these endless meetings, forms, etc., is very accurate, but seeing it through the eyes of a newly disabled person makes it new to me, as well. I have lived in this world almost my entire life and have gotten used to the insanity, to the point where that's just the way things are - I know that if I need any kind of assistance, be it financial or practical, I should assume that it will take months to get it. When you wrote that you came into the meeting saying that your goal was to leave with Dragon in your hot little hands, I couldn't help laughing at your optimism, because I knew that would never happen. That you'd be lucky if you had it within a week or two. And the more I thought about it, the more I realize that you saying that your goal was to leave with Dragon was so very clearly able-bodied thinking. Which made me realize in yet another way (might that be the 17,459th?) how you're not treated like a real person when you have a disability.

A practical suggestion. When I upgraded my Dragon from version 8 to version 9 (the Preferred version), I passed on my old program to a friend who couldn't afford to buy it. They claim that it isn't much difference between the two, although I've noticed 9 having high recognition and that is that thing about how it will work with Firefox and Thunderbird, as well as Bluetooth microphones, so it's definitely worth it. However maybe there's someone out there who has a copy of version 8 that they could lend you until you get your own? Or, if they were willing, to let you borrow their program, as I am almost entirely sure that you can use Dragon on two computers.

Good luck on getting’ some. ;)

Moggy said...

I believe that I landed on your blog through a link over at Ouch! but could be wrong... You're in my Google Reader now, though! ;)

I thought I'd mention a little idea, in case the book-writing grant doesn't go through (or perhaps even if it does)... A group of disabled women got together several years back, created an impressive anthology of their experiences, and used a self-publisher ("1st Books") that also marketed it into all of the top bookstores. I believe it has done really well, though I imagine that splitting the cost between a bunch of authors probably made it feasible regardless. (Might be useful if you don't get a grant; divvying the work up might be useful if your energy levels decrease more.) I've got a copy that a good friend gave me, and the quality does seem top notch -- it's "Women From Another Planet? Our Lives In The Universe Of Autism", editor Jean Kearns Miller, if you want to see it on Amazon.

I don't remember noticing any links between you, so I'll also mention that you might find it useful/good to read the blog Gimp Parade. Hopefully you aren't dire enemies or something... Primarily recommending her because you mentioned being worried about being put "in a home" on a vent -- she's been a vent user for a year or two now, seems to be happy that way, and gets to stay in her own home. It's good to see that it's not the big nightmare we're all led to believe it is.

OK, last thing, then I'll shut up...if getting Dragon via gov't soon isn't feasible, and you have a good 'net connection (or a friend that does), I'll simply say that btjunkie dot org is a very useful place to visit. ;)

Elizabeth McClung said...

Lene: Yes, it must be interesting to watch me running the mazing with fresh eyes. I think one of the greatest changes for me is that before I was "Dr. Elizabeth McClung - Ranked Athlete in US and Canada, Award winning Novelist, blah, blah" now I am "Disablity Meat" - I have at least 4 degrees more than the people who give me a lecture on "When applying for a job, trying to type it, or if you can't, don't use a crayone" - which I guess was about 10 years down the crapper, if I knew I would win the magic ticket to the automatic underclass - places I go now are more interested if I can hold a pen steady than if I ran my own bookstore while doing two other jobs and a degree because I didn't like being bored. They could care less if I am 2 minutes in the chair or 25 years, I am wheelchair disability meat - please fill out and return and your case will be considered by someone who has never met you, doesn't even know what your medical condition is and will never see you: they will determine your the name of the Canadian government.

Thank you for the tip but with non-fiction, I really want to secure either a backer or a publisher. I mean, I wrote about 300,000 words last year, so I am not worried to much about the work and since I live on an island, I am not sure how to collaborate (and since Vancouver eliminated it's women's book prize and grants...). Actually, I would like to try submitting to anthologies, I guess, so that is an idea. It is just, I really want to do this work while the wounds and memories are fresh in my mind (and thanks to Ouch! not bothing with a contract, I can use a lot of my material from there - not my recent piece, that can stay behind).

I know Kay from the Gimp Parade, in an online way. I don't know why she isn't in my blog roll, probably because I haven't updated it in at least er....four months. I have no problems that I know of with her, she is just runs more of a dedicated advocate blog and I run more of a memoir style (wheelchair boxing, wheelchair whatever I can dream up to do, squirrels, lesbian stuff, vibrator reviews, and essays on Neuro and Chronic conditions - and attacks on devos!). Thanks for the tip, I have a big fat connection becuase I USED to be a bit of a downloader (not movies, I owned a DVD distribution business) - so I have like, something rather obscene - I think 1 gig takes like, 16 minutes or something like that. Maybe I played games once - also thanks to Linda and her govt. management job and needs, I have my own server! How crazy is that?

Elizabeth McClung said...

oops, sorry, moggy and lene: first paragraph for lene, second and third for moggy!

elizabeth said...

I also have nothing witty or interesting to say - but I do hope you do indeed get sex. Fantastic earth shattering sex. I hope I get it too for that matter. Hell - hope we all do ;-)

glassroses said...

I hope you get the Dragon software soon. In terms of anthologies, you might want to edit an entire volume (I think this is what Moggy was suggesting)--that would work for a book proposal, too, since coordinating that kind of project can take a while. Most people I know who've edited anthologies have done much or all of the work by email at a distance. I'd be glad to contribute an essay to such a project, maybe something about invisible disabilities, about accessibility as a civil right and what the AB people may not "see," about violence and prejudice against people with disabilities, or about degrees of disability (the huge area between completely abled and what most people recognize as clearly disabled). (Apparently my disability is no longer invisible at all, given the office secretaries' reaction this week.)

I love the term "Disabled Mean Time"; very useful. Healthcare bureaucracy is maddening (the only advantage in my case is it's given me time to figure out, do I really need this? to "I want my mobility equipment now or tomorrow at the latest, dammit").

As far as vent use goes, one of my friends has used one for five years and still writes and teaches online. I don't know how your illness progresses and if that's something that's far down the road or not, but you can email me at any time if you would like me to put you in touch with her.

VK said...

I'd offer sympathy sex, but I'm on a different continent and in a monogamous relationship.

Consolation pretty boys kissing?

Marla said...

I hope you got your sex! Sounds like a lot of red tape to get the program you need. I am proud of you for not giving up.

I feel for you with these care workers coming and going. That would be frustrating and yet you need them.

Liz said...

Yeah sex makes up for a lot and also.... adrenaline good for breathing. Heavy breathing! 8-)

Donimo said...

I often swing by here late in the game comments-wise, don't I? Me and my cracked and disintegrating/waiting-on-a-gov't
-approved-crown tooth empathize with you and your adventures in the labyrinth. Hate it. I'm with Kathz and hope you meet a real,live respectful human being in the gov't. I've seen them, they do exist and they can make a difference. But mostly, it's a grind and somehow, you have to keep going. Tried an advocate yet?

A word about Dragon: 9 is supposed to be better than 8 (which I have), but there will still be times when you hate it and its mistakes. "I said cooking, not cocaine, dammit!" It takes a lot of training and patience. If you want to up the chances that it will recognize your words, you might want to try getting a Parrott mic - it is much better than the one that comes with the software.

TomCollins said...

thank you for your comments on my blog. i have a hard time responding because more often than not it's just : ditto.

i have similar troubles with the US disability system, the first time i filed i was denied because i wasn't considered chronic and i had not been sick long enough. i have an appointment on friday to see one of their people. most of the time it feels like a major waste of time.

Ms. Pet said...

Great rant! And sounds like you've got more sex happening just talk wise then me at the moment! LOL Onto other stuff...

Okay. I hope you won't take this as demoralizing or anything, but those advocats and folks to help you find a job,etc.? All of the jobs they are talking about are basically low end, minimum wage, dishwasher style jobs.

They never helped me find even basic secretary work. I don't know if there is one, but if there is, I'd try a professional agency that deals with folks with disabilities. You'd have a much better chance. The government stuff is NOT for PWDs, it's make work projects for social workers, counselors, life coaches and the such. Now, I've had some great experiences, especially with the Employment office for PWD in Nanaimo, but the truth is....

They don't deal with folks with higher education. The programs, all of them, are set up to deal with those considered "most in need," and although you have a terminal illness, etc. Since you have a higher education, you are not considered to be one of the "most in need." I've dealt with this bullshit for over a decade and I'm telling you...You will NOT get a job through government employment programs. Now...

if you are like me, and you needed help on such things as maintaining work, dealing with social skills, office politics, conflict resolution, time management and all that, they can REALLY help in that regard. But I don't think that this is what you need.

It is assumed that if you have all the skills you have and a higher education that you can get yourself the job and don't need help. And compared to someone who doesn't have your skills etc. it's true. The system isn't set up for higher functioning, whether that be physically, or skill wise individuals. I personally, wouldn't waste your strength with these folks, they will NEVER ever get you a job. Their focus is too simply keep themselves employed. That's what most of these programs are for, keeping people in the Poverty Industry Employed.

About the blog...I was thinking about it and wondering if Linda might not want to keep it going? I'd like to be here for her, if she needs it. Which she probably will. It's the least we can do. And we could all work on getting your blog published. your writing is so good and "well written" as they say, and that's actually becoming more common. Blogs being published as books. Or did I miss something and that's what you're talking about? *hugs*

Honey, if you want me to visit you, it needs to be soon, because my finances have just taken a major nose dive and I'm not going to be able to afford it, I might not even be able to afford it now. I keep talking with Zeph but nothing is happening. Please email me at if you are not getting through in the sexability email. *hugs*