Monday, December 31, 2007

Hey New Year, wish you didn't look like the Old one.

I couldn’t talk for part of today. I thought I was clear enough but no one, not even Linda could understand me. My home care worker told me that I was “pretending” and started to make fun me and my talking, and saying how convenient it must be for me to “pretend” I can’t talk when I don’t want to. Linda told her that, no, this was a part of my condition. But the worker laughed that off because she had seen me a couple weeks ago and I could talk okay then. “You pretend” she tell me. Since I couldn’t make myself understood any other way, I had an overwhelming desire to strangle her.

Yesterday’s hours of erratic heartbeats had caught up with me last night when I was “out of it” though Linda said I was in considerable pain but only able to moan instead of talk. I had already recorded and demonstrated the weakening of the right side of my tongue as well as my vocal cords before Xmas but neither the GP or I knew what we should do about it. Over the break, there had been two instances of the gag and swallow reflux failing as well as waking up choking because saliva had collected in my lungs and stopped enough air for me to wake up gasping and choking. I didn’t know that could happen.

Later, after several hours of rest, when I was understandable, I called the manager of the home care whose response to the home care staff telling me I was a liar and a faker to my face before making fun of my speech disability was 1) “That seems odd.” 2) “I am sure she didn’t mean it” and 3) “I am sure it didn’t happen that way” at which point I handed the phone over to Linda who confirmed that it did happen that way. The manager never said that the action was inappropriate, but that the person would be spoken to. After dealing with this particular manager that if a case worker had told a black client with Parkinson’s not to feel bad about having a brain fog because black people are by nature less intelligent and they complained, I am positive she would say, “I’m sure they didn’t mean that.” What I find so dehumanizing is that assumption that after being verbally abused and mocked about your disability by the person paid $19.59 an hour to assist you; that I, the person who slurs and is a ‘client’ must be wrong until Linda gets on the phone and says, “No, it actually happened.” Why are the disabled automatically to be disbelieved? Not only did this manager NOT ever apologize for the care worker’s behavior (Instead of “statements like that are unacceptable!” I got, “Well you do have a LOT of different conditions” – that justifies human right violations and verbal abuse now?) but also said that they were technologically incapable of reducing that care giver’s number of days; so until a replacement is found, they will be returning. In fact, they will be the next home care giver I get (oh the laughs we will have!).

In somewhat unrelated news, after four weeks of attempting to go to the office of the Income Assistance for British Columbia to apply for Person with Disability Status, I was told on the phone that I had to complete a 10 minute on-line process and then await a call, maybe on Wednesday. Then, if I passed the phone interview, I would have a 90 minute meeting to determine if I qualified for “Welfare.” The person on the phone was adamant; “You can only become a person with disability and apply for that once you are eligible for Welfare.” The on-line session was completely about my requirements for job searching and how I would be required to provide proof of job searching for three weeks before I would be eligible to even apply to receive Welfare. What did this have to do with being a PWD and getting a subsidized bus pass again? It ended with a two page list of things I must bring to the meeting not limited to: “Proof of application to Employment Insurance”, “A current Resume”, “Proof of job Search” and that I could be rejected without sufficient examples of cold calls, applications to advertised jobs and similar evidence of attempts at employment.

I returned to the BC government webpage on the Fact Sheet on Persons with Disability where the application for asssistance states clearly that forms are available to individuals eligible for disability OR income assistance. I called the Ministry back and was put on hold for over 30 minutes to be told that, “I don’t have to go into that now, someone will contact you on Wednesday.” When on Wednesday, as I may be ill, incapable of picking up the phone or in the hospital. This seemed to throw the person on the other end of the line in a panic. “Do you have shelter?” they asked. (Dude, you just made me take a 10 minute on line test to determine if I am looking for work enough and NOW you ask me if I have shelter? Do you have a lot of homeless with laptops and wireless access?) Yes, but I have a severe medical condition. No, no, they couldn’t talk about it, but I HAD to pick up when they called. It was very strange as, according to the Ministry, only if I qualify for welfare, act as an able bodied person and bring a resume do I then get past the gatekeeper to apply to be a person with disability. And if I have a house, or stocks, or anything that can be sold for cash; I can’t be disabled, at least not officially, in the province of BC in Canada.

Why is the agency in charge of people with disabilities, when they have a person on the line asking them what day it is today (me, because I didn’t know) does not check what is the person’s disability. They never asked, because unless I qualify to go on welfare, it didn’t matter to them. Regardless if my disability impairs me from understanding the demands and tasks to be done at very specific times and days. That does seem a puzzler, no?

The point of this New Years post is that though I am ready to try and get a jump on my condition, set up a stable environment and push myself in social, physical, cultural and activist goals, activities, dreams and hopes, there is no point listing them. Why? Because today I was told from my home care company that the only person who could authorize care workers assisting me in taking a bench shower is the same case manager I, my GP and my previous GP have been trying to contact since October so care workers can help apply my oxygen mask. Or to put it bluntly; since I am currently dependant on others to enable basic functions or advance my medical and social stability it looks like this year is going to be a continuation of last. And last year was a time when the time and personnel wasted ensuring that I KNEW that as a disabled person I was not equal to or should try to dream, desire or imitate the life of “normal” people versus any sort of empowerment was at least 15:1 if not 50:1.

The only people who on a regular basis who are telling me that they believe in me, that they are rooting for me, that I DO make a difference in the world and I can continue to do so are the people who read this blog. That is the positive difference in my life. That is what I am thankful for in this New Year. I wrote on my intro in Ouch that “blogging makes a difference” – well, the people who are there, who read you and respond and let you know that my thoughts (while completely and totally wrong) are going to be taken as seriously as the next persons. Right now, that is of tremendous importance to me. People take what they want from what I write and I write so can they do that. But I have to thank all of those, especially those who have disagreed, corrected, dissented, argued against or rebutted my ideas that you NEVER dismissed me because I slur, or because I am in a wheelchair or because I am in some way different. Right now, that isn’t how I am generally treated. And if it wasn’t for the people who comment or email me, I don’t think the self image of myself as YES, being just as equal, just as important, just as worthy a voice would have survived. No one deserves to feel they are a ‘lesser human.’

Anyway, Happy New Year? I hope to amaze and astound you with my latest trick: Hang gliding (hey, they have tandem rigs, so what if I am scared of hieghts!)


Lisa Harney said...

I've been hit with the "I'm sure they didn't mean it" thing from a friend that I no longer speak to (and no longer consider a friend) over something related to a really nasty trans stereotype (I mean, a trans woman who wears a dead woman's skin to become a woman level of nasty). It's like a fucking wall - "I'm sure that s/he didn't intend to be hurtful or insulting." and "Yeah, well, results matter more than intentions" just gets the same response.

It's a privileged response, one that shows the person you're talking to not only doesn't spare your complaint a moment's thought, but has the luxury and privilege of ignoring it altogether. Care services absolutely shouldn't work this way, but, well, you remember the Staff Personality Disorder website I linked a few weeks ago? :(

Not justifiable at all, but it's fucking institutional. It might be good to just scorch it all down to the ground and start over. I'm not sure how to purge able-bodied prejudice (or any other kind) except maybe by making people experience what it's like to be treated to it - like an experiment that was done in a classroom a few decades ago. The teacher separated the students into blue-eyed and brown-eyed sides, and encouraged the blue-eyed students to act as if they were better than the brown-eyed students. Probably should've gone both ways, but still.

Lisa Harney said...

Darnit, hit publish too soon.

Anyway, seriously, this kind of stuff should be normal, but society's built on this notion that you can pretend to not be bigoted, which only allows you to be bigoted as much as you like as long as you don't use the wrong (emotionally loaded) words, and even then, some are acceptable.

Elizabeth said...

God, Elizabeth, discovering your blog was an f'ing revelation for me. I read a TON of blogs, way too many, but clearly not way too many because if I didn't read them, I wouldn't have come across what you are doing here.

What are you doing here? Well, I couldn't categorize it, but that's sort of the point. You're waking up everyday and at some point, nearly everday, letting us know what's going in your life and your mind and your body.

I suspect that you would write a highly interesting blog if nothing nasty had happened to your wheelchairs, no pain, no medicos....and that's what hooked me into the blog first. You're a cool, interesting person. And then there's the other stuff.

If the blog is making you feel heard, that's a good thing, because you are *heard*. (Nevermind that I'm getting a wee bit of a girl crush..... :) )

hugs, E

Katrin said...

"You can only become a person with disability and apply for that once you are eligible for Welfare"

What?!?! You mean if I just had never applied for SSDI (gov't disability assistance here in the states), I wouldn't have become a PwD? I could have avoided being disabled that easliy??!! Is it retroactive? Can't I just call them up and say, "I'm done being disabled, can't I have my old life back please?" and it will happen?? Oh please, please tell it works that way! That I can once again walk my dogs for 5 miles and not have it take 6 hours, or cause me to stay in bed for 3 days straight after. I'm sure they would very much appreciate it. That I can work a 40hr (or even 15hr) a week job with excellent benifits. I can afford to move out of this house without my wack-o family. That I will stop falling down, walking into door frames, dreading door knobs, I can eat a regular meal anytime I want? Please, please??!!

And round and round you go. Where does this logic come from???

"that I DO make a difference in the world and I can continue to do so are the people who read this blog."

Then you will hear it once more, "You DO make a difference in the world!" and I hope you decide to continue to do so for as long as you so desire.

Gaina said...

Hmm...I wonder how the parties concerned would like to see their faces and a catalogue of their abominable behaviour pasted on the front page of your local newspaper?

Hasn't this bitch broken some kind of law by verbally assaulting you in that manner?

Next time you lose the power of speech, give her the the middle finger - that'll get the message across.

You and Linda could have fun writing some flash cards for these occasions with various colourful phrases :D.

So let me get this right, you have to qualify for welfare before you can even *begin* to apply for disability benefits? That sounds typical of the arse-about-face logic of our benefits system, and with this new 'initiatives' to get disabled people of benefit, I don't see it getting any better.

How much of a pain would it be to get a new care agency? I think these people need reminding that YOU are the customer, and as such you have every right to take your business elsewhere if you're not getting the service you expect.

Lene Andersen said...

Sometimes, your posts make me want to cry. Or throttle people.

Is there a disabiltiy advocacy group where you live? I've only been reading for a while, so you may already have covered this, but I can't help but think that maybe an advocate could help you, so you don't spend precious energy on navigating the bureaucracy. Or your MPP? Isn't that what elected officials are for? The care agency is funded by the government, right? So if the MPP's office called, maybe they'd find you a care worker who isn't abusive. Or maybe the MPP could help with navigating welfare, because they're full of shit and there's a way around the rules (it's called accommodation, the bastards), they're just not telling you. Can you talk to that person's supervisor or your provincial minster of social assistance? I have a friend who works at the supervisor level of social services and through her, I've seen some of the tricks. And back to the disability advocacy group... in Toronto, we have ARCH (legal) or CILT (Centre for Independent Living in Toronto - maybe there's one in Victoria?

Sorry. I got all problem-solvery. This shit you're going through makes me so mad.

Elizabeth McClung said...

Lisa: Yes, in this day where it seems people are fired or retired left and right to find the "I'm sure they didn't mean it" which translates to that they said it out of ignorance - HELLO!? Isn't that where all predjudice comes from? That doesn't make it good or acceptable (I am thinking here of verbal comments made of both trans and people with disabilities).

You are right, because there is only one government funded care facility, and becuase there is no oversight, management have become the problem. The worker was bad, but it became clear that the management was the real issue, that this worker would be sent out to someone else, without retraining, to someone who isn't "so sensative". I remember the blue eye/brown eyed experiment and I agree, no one really gets it anymore because in our wonderful utopian society, surely there isn't anyone who is treated differently; it is unimaginable (to those who simply cannot imagine it; along with not being able to imagine people exist who can't afford an SUV or go to Starbucks)

Elizabeth: Yeah, what AM I doing here? I seem to have lost the plot, or rather, lots of plot but no chapter headings. I am glad that people do come here for reasons other than gay dolphin sex (not that isn't important too - it is a post on Poro, or Poco the gay dolphin of New Zealand who was, not joking, pink - which got this all started).

Katrin: Yes, I love how they pour all this money into getting PWD "into the workforce" but not much at all on things like living expenses which they only just raised last year - assistive animal costs were raised finally from $62 a month to $95. Ah well, nothing like the joy of having to humilate yourself first by showing how truely worthless you are in the workforce before applying to show how truely worthless you are as a functional human being. I point out to "Welfare" yesterday that of the 129 government jobs offered this week - two were part time, one was 4 days a week and the other was as a corrections officer (prison guard) which requires night shifts and overtime. The one place that REALLY seems to have wierd part time work is VIHA, the Victoria Island Health Authority, who has to authorize my shower - my "case manager works 2 days a week, but has been on vacation 7 of the last 9 weeks, while my Occupational Therapist works...1 day a month. Now that is the kind of job I could handle.

Gaina: I tried the name and shame with the GP's and it did no good. I mean the treatment is SO bad, that last month, a nursing home which was treated by the SAME care worker agency (there is only two, and one is quitting next month to be taken over by the other) had I believe hundreds of complaints but it was only after a dozen or so negligent deaths that it was investigated and reported in the paper; the solution, put a person from VIHA, the group which authorized the agency in the first place to regulate the same care workers of whom the complaints were made.

The homeless group, Cool Aid, who are my doctors, was actually given an entire building full of people like me because VIHA was 'supposed' to be monitoring and helping them and supervising care there but the people from VIHA were missing or absent so often (wierd how that happens) that the people in the building ended up in worse shape so it was simply given to an independant organization because VIHA (the official health organization of the island) admitted they couldn't handle running it.

There is a grant, called the CISL grant in which i have my own funding and hire my own carers; however my "case manager" has told me that if I apply for it, I will have ALL my care removed (she never approved my level of care and doesn't believe I should have it). I told her I wanted to apply anyway; that never happened. I'm not a "consumer" I am a "client" which means that other people will decide what is "best" for me without ever informing me or asking consent.

Lene: Vancouver has those groups, Victoria does not. There is a "disability resource centre" but even it admits that it does not advocacy and its list is several years out of date. BC is the only province which wrote a law to get rid of the ombudsperson for human rights as well as the human rights tribunal, which means if you feel there has been a human rights violation, you have to fork over the money to fight it yourself, for many years (which is why government agencies play fast and loose around here). Even though the party in power has reduced the parliment session to two months (I know, surreal), writing my MPP is an idea, probably better one than writing the Governor General - which was my other idea. The person I got the "I'm sure she didn't mean that" and "I'm sure it didn't happen" WAS the supervisor OF the supervisor of the care worker. There really isn't anyone above her, and with them closing in six weeks, I don't think they give a damn. I could try the minister of social assistance route. It is just every time I get enough courage to complain about mistreatment and am brushed off, it seem to take more courage and energy to try calling the next person. Or as the EMT supervisor said to me; "It does matter what they say to you, it is not like anyone is going to lose their job." or as the College of Physicians and Surgeons of BC told me when GP's were dropping right and left; "There are serious things, like accidently chopping off someone's foot and then trivial things, like what some doctor might have said to you."

Anonymous said...

My GP thinks I'm faking 5 weeks of acute illness (unrelated to my disability), or at least that I'm too focused on it. Whatever. Sometimes I think the vast majority of those who do understand are others who have disabilities or chronic illness. While I think there are many people who would/do have empathy for people with disabilities, they may not know/realize how difficult accessibility and getting basic human respect are.

The good news is that the more disability blogs there are, the more people without disabilities will read them at some point, changing perceptions and minds about the hurdles and obstacles (from prejudice and rudeness to ridiculous government agency contradictions about "too disabled" versus "not disabled enough").

I think disability rights is slower to get recognition because we have to spend so much time on day-to-day and immediate needs and aren't necessarily able to protest in the same way that feminists and civil rights activists were able to do. And not as many disabled people have access to resources and information (such as the internet) so that they can advocate for themselves, or they are often unable to advocate at all.

It's unbelievable sometimes. My insurance co. thinks that a wheelchair or a scooter is not a necessity if it will be primarily used outside the home for work, as that's not a medical necessity. Nevermind that the insurance is through an employer! The ultimate irony. And since ADA doesn't include personal medical devices like wheelchairs or scooters under employers' requirements, it seems as if the insurance co. would pay for them.

Need to make my own blog, and I'll provide the link as soon as I do.

Happy New Year--hope the red tape issue works out quickly so you can get the financial help you need.

Katrin said...

"assistive animal costs were raised finally from $62 a month to $95."

You guys get an allowance for that??!!

God I wish! After my health insurance, dog food and vet care is the remainder of my check every month. Some states have small stipents for it (if you are luck and you SocWork will push for it, or if you even have a SocWork to help with stuff like that, which I don't) but the most I've heard anyone ever getting was $50 per month and no one in the state I live in has ever gotten any assistance AFAIK.

I even talked to Medicare to see if an assistance dog could be written off as "medical equipment" which they do pay some for. No one knew. After 4 people, they sent me to SS, no one knew there either. Finally I was told "try submitting a claim and see what happens."

Gotta love it, just gotta love it.

Devi said...

I'm furious, I'm honestly furious at how you were treated. Some people shouldn't be allowed to work with human beings.

alphabitch said...

That totally toast my tits, the way people want to tell you that something isn't really happening when you know damn well it is: "Oh, you're not losing your memory -- everybody forgets stuff, welcome to the real world," or "They're probably not being racist; maybe they just don't know any other black people," (I really heard somebody say that to a scientist with a PhD who had been mistaken, yet again, for a secretary and told -- not asked -- to make some photocopies).

Let me know if you need a tandem skydiving partner. I'm not so much afraid of heights as I am of jumping off of them.

Zephyr said...

Hmmm, when I applied for PWD, I was allowed to skip submitting the job search results, etc, because I got a note from my doctor saying I was too sick to do so. Maybe you could do the same? Ask the worker who calls about that option.

Sfrajett said...

You are an amazing person and clearly a strong one. I love hearing you fight back. If anyone can hang glide it's you. I am a spotty blogger and commenter but know that people are out there, including me! happy New Year--I'm sending out wishes for this one to be better for you in all ways.

Donimo said...

Thank goodness the Blogosphere helps temper some of the shit you are dealt . I am with everyone else in stating how outraged I am with the care worker and with all the gov't bureaucracy.

I've been on Dis. welfare for years now and I'm thankful that I didn't have to apply during this climate of hatred and exclusion. I have had to do some appeals for coverage and was helped immensely by The BC Coalition for People with Disabilities. Their advocates have helped me get the most coverage possible in many categories. I assume they help anyone in BC and not just Vancouver. If you would like more details, just email me.

I f'ing hope you can clear some of this away so that you can get the most out of 2008.

Elizabeth McClung said...

Anon: yes, I think the problem is that people with disabilities are generally have less power, both literally and in society - I mean, we aren't going to protest en-mass becasue many of us are just too sick to get there.

The scooter logic is classic government thinking - I hope you get your issues with them sorted in your favor. I'm sorry you have been under for the last five weeks - Linda and I noticed that a lot of people with disability blogs seem to have health issues in the fall, whether that is weather or stress or demands or some combo, I don't know. Any theories?

Katrin: yup, but there was no increase for humans with disabilities - still the same $375 housing allowence - for a capital city. It is almost unbelievable that assistive animals which have been around for a couple generation is something the system has never dealt with - this year, for the first time the Canadian government will allow you to deduct 1/2 of your air condition if you bought it on a prescription due to heat intolerance (the cost of running it full time is not deductable).

Devi: Yeah, what scares me is that "home care" is sort of seen as the "mcdonalds" of jobs, in that, if you can't get a "real job" or don't want to go to school, do home care because they will take ANYONE. In fact, one home care worker told me straight out, "Why did I choose home care, because I failed my nursing courses and I just don't care anymore." - what a charming and reassuring opener.

Alphabitch: yeah, that, "I'm sure it was an accident" or "a slip of the lip" just one that keeps happening.

Hanggliding, no problem, I'll push off and you can do the navigating while I am busy screaming.

Zephyr: That is a really good tip, thanks, I am talking to my GP tomorrow so I will see if he can write something and get Linda to pick it up at the office.

Sfrajett: I'm sorry I haven't been around at your blog as much as I wanted - thanks for coming by and letting me know you still read - and yeah, I am totally going to hang glide, I am trying to come up with some record of every possible sport someone could do from a wheelchair.

Domino: Yeah, when every announcement is about "Yo, you disabled better go get jobs!" kind of not a good time to be saying, "Help me!"

Thank you for letting me know about the BC coalition - see how blogging helps! And I hope we both get a better year this year!

saraarts said...

This completely enrages me -- not the good bits, the bits about finding community and all. I mean the rest, the parts about being discounted, contradicted, and made to jump through ridiculous, nonsensical hoops.


Sorry. I have nothing more intelligent or amusing to say at this time. I am very grateful that you bother to write this stuff down, though. I think this is very, very valuable and important documentation, and I even go so far as to say sometimes that those of us who are able to document the things we go through (and it's not always the same people every day) are sort of obliged to document the things we go through. No record = no change, you know?

Of course, the molasses of change moves very, very slowly, and it is January after all, but change can't and won't happen as long as the truth of how this all works in real life is not exposed. So as painful and horrible as all this is, I repeat: Thank you for recording what you can, especially so cogently. Good work.

Marla said...

Oh my God. I can not believe that woman. What a sicko. I am so glad you called. Sucks Linda had to say something too. What are these people thinking?

Anonymous said...

Re. illnesses: I'm not sure, Elizabeth. It hadn't occurred to me that I get more ill and also have more pain in fall and winter, but I do. I think stress and working more hours than is optimum for my body may have a lot to do with it, though that doesn't explain all of it. I was at an unusually bad pain level when I got respiratory illness that's been going around, and that's probably been why it's more difficult to shake.

On bitchphd's blog, there's a discussion of the nonconsensual use of women's photos from their online photo albums on porn sites--do you mind if I give a link to your 12/18 post about finding your photos on other websites, or would you rather I didn't?

Elizabeth McClung said...

Sara: Well the good news is that Linda called and went postal and I guess the voice of the able bodied is heard louder because they called to tell me the same worker WON'T be coming tomorrow - horaay. Small victories - I'm probably labelled a "problem client" now.

Marla: I don't know, I am surprised how many care workers really know nothing at all about the variations within disabilities. I mean if she had a MD client and saw her standing would she say, "Pretending" next time that client used her wheelchair?

Anon: I think the stress is something to do with it to. I just turned down contract work tonight because I don't want to be in the state I was last week again. Right now, even a limited improvement in health is worth more than someone else's project - I'm sorry, but I just have to take a break.

As for the link - sure, I should go over and she what she says about it - that sounds like an interesting topic.

Liz said...

Maybe take a photo of that bitch home "care" worker and post it... with this story and her full name.

Wouldn't it be awesome to report on her to the newspaper? Well, you're the media and you're a citizen journalist. Get on it and embarrass that bitch in public.

And everyone else like her. Seriously, we need our own disability Hollaback site.

*BOILING MAD ready to kick some ass *