Friday, November 23, 2007

I ponder why of all who profit from my existence, I do not

I am here thinking about what clever and wonderful post to do for today, except that I can’t breathe. Or rather each breath requires concentration, effort and pain; a whole sack full o pain. Indeed, I can barely see the screen it hurts that bad, and I’ve already taken my opiate painkiller. Now, you could reasonably point out, it seems a bit, um, hypocritical to deliberately go and try to literally tear down as many muscles as you can and then complain the next day about pain. Well, I DID mention The Plan has some drawbacks, the first of which is lying two days a week minimum in bed in agony. But when you are playing for life, death, mobility, functional internal organs, and degrees of independence, you don’t make small bets.

Which gets me to my question, what use am I as a human being? Why should anyone come to help me eat, or help me to the bathroom, or help me to bed when I can’t move? Why should I be taken care of? What purpose do I serve in our national and social framework? The plain fact is that I am not well loved by many people: my family whether immediate or extended isn’t interested in assuming the burden. The reality is that care isn’t coming from family. So it falls to society. And I, as a rational member of society (albeit only barely rational in this level of pain) don’t see the gain. I am not an “angel” spreading goodness by the love that shines out of me despite my disability. Nor am I an icon to be held up as a person who deserves what they got for leading the life they lead: a sort of living public service announcement. If I was taken to schools my message would be; drink more, have sex, act a bit wild because if you exercise daily, eat a healthy diet, never do drugs and invest in education and your future you could end up in a wheelchair like me.

There is, I realize a gigantic industry of people who make their living off my existence. I have a case worker, I have a occupational therapist, a recreational therapist, a physiotherapist, a GP, several specialists, middle managers at VIHA to allocate money to the listed workers as well as home care workers, home care schedulers, middle management for home care workers, respite managers and workers. Then there are the medical supply stores that sell you a bath bench for $250 which looks very much like a plastic lawn chair sold at Target or London Drugs for $25 (but if you don’t get it from the medical supply store then your insurance won't pay); there is the company which sells me oxygen, there are the people at the insurance offices, the disability assessment officers and the disability investigators. Those are but a few of the primary people who make between $40,000-$65,000 annually administering to a small collection of people like me. There are also secondary people who make money off of me, like the Inland Revenue/Revenue Canada people who spend time to send letters requesting more information or auditing your medical deductions, the administrators at all of the doctor’s offices, EMT’s, and all the technicians for the test that are ordered, bloodwork that is drawn by one person and processed by others. Then there are the drug makers, the sales reps and the pharmacists for the medications I am on. These people all make some sort of living which requires that people like me exist. They are all hired, judged on their skills, employed and paid to take care of people like me, without any input or involvement of people like me in the process. Nor, do we receive any share of the financial remuneration they receive, even if, for example during medical test, we do more labor than they do.

Being disabled is costly. This week I made $40 for coming up with a better word arrangement for a yellow pages ad by people who knew me before I was disabled. My average costs this year to keep me mobile, and as healthy as we currently know how along with emergency aid is averaging $250-$300 a week. So yes, you could get a very nice two or three bedroom condo and pay that mortgage, or you could be married to me; which Linda is, because that is legal in Canada. It is too bad that in Canada, as long as your partner makes enough money for both of you to be very, very poor, then they are required to pay for your costs. And yes, that is what we pay for AFTER insurance; without insurance, I cannot imagine how wretched my life would be like (no boxing for a start!).

I have been contemplating the amount of legislation that has gone through or is present in order to protect the people who take care of me (like they don’t have to lift me, that is a 911 call, which, whether they take me to the hospital or not has doubled last month to $85 per callout, whether I make the call or not). Legislation to make sure I am disabled; legislation on who can and cannot be considered disabled, legislation on how much disability money I must give back if I make money, and legislation and audits confirming I am disabled. I have not yet found any legislation to encourage or assist employers in actually hiring someone with a disability. As my home worker says; “I know Safeway hired people with Down’s to bag groceries.” Well, that is true, “Have you seen any workers there in wheelchairs?” Uh…no. Any in Starbucks? No. Any wheelchairs in ANY major public retailer with the exception of a medical supply store? Well, I haven’t yet nor had she. “But,” she pointed out, “They might be in the back answering the phones.” Well….yes.

Last year, I applied for government research jobs, writing government position papers and university teaching positions. This year I have had three job offers: one was to fold a pamphlet and put it in an envelope (a job I ironically did for 4 hours at age 16 before quitting, how we have turned full circle), a job answering phones and a job putting away DVD’s which after two days I was told that the able bodied staff could do it faster.

So today I called the company, Triumph, that the British Columbia Government has given 500 million dollars to get people off disability and into jobs. They have “courses” and career counselors. What I wanted to know was, “Do you have access to part time government jobs.” Errrrr….no. Because of the 140 government jobs offered weekly, about 139 of them are full time and a majority of them require the ability to work overtime, to travel or to drive (or all three, as for instance Linda’s job does). So I asked the person at the other end, "What I want to know is, could you get Stephen Hawkins a job?” She seemed confused.

“Well,” I said, “He needs an attendant, he can’t work every day and he probably can’t work full time, plus he has a VERY limited resume. He might be brilliant, but could you get HIM a job?”

“Uhhhhh….” There was a pause, “After the orientation there will be a time for questions.”

“I just mention this because I notice that all of the “success stories” on your web page involve people with depression and back pain and going into entry level positions.”

“You know, those are things you could ask in the question time.”

I plowed on, “Indeed, the one person who was closest to me was the woman who had a stroke and had a B.A. in Business Education and was a loan officer, the equivalent of a level 14 or level 18 administrator, and you got her into a “home business” of doing data entry, which is a level 5 or level 7 administration task.”

“Um….” Another pause, “That’s something you could bring up with your career team.”

“I just mention it because that’s one of six employment you list as a “success story””

“I have another call coming in!”

From what I can gather (I have an orientation meeting with them on Tuesday), that once I sign up, they get authorization from my doctor that I am disabled and then get authorized funding from the ministry to “help me.” What I have to wonder about is if this is going to be like my recreation therapist who wanted to hold endless meetings of which SHE got paid for each of them and in the end she arranged NO recreation for me (I did it all on my own). I mean, this should be Pay-or-Play, right. Because if they are paid whether they find me a job or not, I have to think they are not going to be very motivated to find a suitable job for someone like me who is severely disabled. While if they got paid ONLY when I found a suitable job, they might really go the extra mile.

I was even less impressed (read: enraged to the point of screaming at the computer) when I found out that they expect the “disabled” placements to perform as well OR BETTER than the able bodied employees and indeed asked the workplace to rate them on ATTENDENCE (“86% of persons with disabilities rated average or better on attendance”). My first thought is, “What kind of crap job is it where attendance is the most notable skill?” and my second thought was, “I am DISABLED you FUCKERS; this means I am not going to be able to compete on a level playing field with able bodied individuals.” Because if I am conscious and can concentrate for five hours a day and I am compared with someone who can concentrate for eight hours plus overtime; I will not be rated “as well or better” than ‘non-disabled colleagues.’ When I go boxing, I don’t box the same amount of time as the other people in the class; I need to take oxygen and cooling off breaks. Plus the next line was that “90% of employers had no increase in insurance costs” by hiring someone with a disability. Oh great! You mean the place PAID to help people with disabilities is trying to convince employers that I won’t have a higher insurance cost? What is wrong with this paradigm? Well, that only “certain type” of disabilities are then desired; and I am guessing the girl with the passing out problems, the need for oxygen and the inability to move at times (along with leaving work in an ambulance a few times a month) might NOT be the most desired “disability.”

Or as my home care worker bluntly put it, “Yes, a cinema COULD hire you to rip tickets at the door, by why take the liability risk when they can hire a 19 year old with no experience but has no medical problems? Yes, it might be discrimination but how are you going to prove it and in the end, it is what they are going to do anyway.”

Right. So, right now, my entire contribution to society seems to be the testing of vibrators. Which is I suppose a noble sort of pursuit. Certainly there is a crying need with Christmas tension coming for someone to say, “People, you need to keep your stress levels down, I’m BEGGING you, please masturbate EVERY day!” But is that really enough of a reason for me to be kept alive? Or am I like the coal industry or the BC timber industry where so many people rely on me for their livelihood that even though there is no economic sense in my existence, I am supported regardless.

Okay, I’m done. I’m still in pain and this isn’t a happy blog but it is a question I want an answer to. I am not a 85 year old who has had children, lived her full life asking, “Why am I still here.” I am a person who has a wonky but still impressively big brain, but in her present situation cannot see a cost ratio reason on a personal or societal level for supporting my existence (It is pretty easy to get rid of me, just lower the hospital bed until it is flat and don’t give me any oxygen).

Gee...that was thanksgiving?


Lisa Harney said...

Speaking on a personal level, I really do look forward to your posts every day. They do run the gamut from medical concerns to feeding psycho squirrels. I imagine others feel similarly. I mean, yes, I've been reading your blog for a whole month, but you have readers who have been here for much longer.

Your comments on my blog are welcome - I really like that you have everything from crime statistics to jokes to post there.

I think, also, that there's the matter of living for yourself and Linda. Do you feel that your life provides no value to either of you? That the emotional value has no personal meaning? I would be surprised - and probably disbelieving - if you said that was the case.

You absolutely should not feel guilty for not having a job, any more than you should feel guilty for being disabled.

You have value because of your humanity, not because of any job or lack thereof. You have value because of what you say and do. Who you're important to.

There's a lot of stuff in your post to unpack about how society treats people with disabilities, but I am way too tired to address it without my grammar going to hell. However, I will try to say something more when I'm not tired with a massive headache.

Zephyr said...

If you do the cost-ratio analysis reason for the existence of any disabled person, most of us would be pretty worthless. I stopped doing that because it made me nuts.

That being said, there are many hidden or lesser-seen things we give to the world. One of the things our existence does is forces TAB people to deal with us. That's always a good thing. We're not going anywhere, let's face it.

I doubt that's of comfort to you, though. I had to find my own reasons to find worth in my existence, I'm sure you will too. I've often undervalued my contributions to society, disability or not.

Zephyr said...

PS. You could just embrace the idea that your existence forces people to see an Amazonian redheaded wheelchair-user in corsets and faerie wings streaming down hills flashing their skull panties. That's a very valuable contribution to the world!

zara said...

Hi Elizabeth,

You raise some very interesting points. There are indeed a lot of people making a generally very good living off disability and a lot of them are not very motivated and often not very nice. It is kind of ironic, really, not to mention scandalous in so many ways. I remember one guy here saying that if you took all the money that is invested in the various programs and services for disability and divided it among people with disabilities, we would all be filthy rich and would not need to rely on these various programs. Personally, I would probably buy a nice little cottage near the sea with my cut, maybe in Italy or North Africa, and hire a gorgeous man-about-the-house to do all the stuff I practically need to beg for in the public sector now. He would be very well paid of coure but my only condition would be that he would have to work shirtless.

Anyway, you may have already explored this avenue but have you looked into the federal program [ironically] called the Opportunities Fund ?

And finally, well, I can not really say why you are here but I am just [selfishly] glad you are.

Ruth said...

The societal pressures exerted toward viewing humans' worth according to their 'market value' are strong and ingrained. Until I 'got' this, I begrudged taking care of myself every time I needed to practice self care. And if I couldn't work - well - I was taught by society that I certainly shouldn't cost anyone anything!

I was fortunate enough to learn from the wisdom of a child on this. My nephew puts it quite simply: We're all worth the same as people. Doesn't matter what we "do" - it's inherent in all of us just by being- a dignity, a worth. We don't have to earn this value. Even if our families don't embrace us. Even if society sends us 'guilt' messages that we cost too much to take care of (built into many programs and hard to ignore this message sometimes)!

I wish I could send the kid to you to give you a hug and impart some of this wisdom to you. I know if he was there he'd look you straight in the eye and convince you of your inherent worth, point out your wonderful way of being in this world, much better than I ever can. He's made me a believer!

Happy thanksgiving.

Marla Fauchier Baltes said...

I have never thought of it in that way. The number of people who profit off of my existence and health problems and my daughters. Ugh. Good food for thought.

alphabitch said...

I know I can always count on you for a quick and trippy happy-go-lucky dose of cheerfulness and light.

Sometimes I get so freaking grumpy about capitalism, and reality.

Gaina said...

Holy crap, I wanted to move to Canada at some point as I thought you had a better system than us but this sounds like the same garbage I have to put up with in England!

I agree 100% with you that the people who are supposed to be helping us find jobs should be paid on their performance. I actually worked in a job center for a few years and our Disability Employment Adviser was excellent, and really cared weather her clients would feel fulfilled in the jobs she was finding for them On the other hand, when was my turn to be in the clients' side of the desk, my DEA was utterly hopeless!! She's still in her job though, getting paid to 'hide' people in the Incapacity benefit statistics instead of trying to find people like me a job!

There was one chink of light - a training program I agreed to sign up to 7 years ago and technically it did get me a job and set me on the path that led me to this Art degree, but that only lasted about 9 months because the funding for the department I was working in was reduced. So once again I'm the one spending money and taking responsibility for my future (which I don't mind doing *at all* as long as the people who are supposed to assist me are doing their job too!).

The old motto is true 'if you want a job done properly, do it yourself!'.

And as for disability aides? Oh man, don't get me started on those! I had to buy my own crutches from america because the ones I needed aren't available on the National Health Service here. There seems to be this attitude that we should be grateful for anything the system does to make our poor unfortunate little lives a bit easier, whereas in places like america they treat you like a customer. I couldn't believe the glossy leaflets they have for new chairs etc over there, it's like they want to 'wow' you into buying their product. Y'know, like a normal consumer ;-)

Is the testing of products (adult or otherwise) from the point of view of a disabled consumer a possible avenue you could explore? I'm thinking you'd be able to do the job on your good days.

Listen, you're a human being not a commodity (although I totally understand how the system and some people's attitudes can make a disabled person feel barely human at times, trust me!) and reading your experiences in this blog has a value that I can't begin to express.

Despite being born with Spina Bifida, it's only very recently that I have begun referring to myself as disabled and talking about the issues that surround it because I was actually ashamed of it and didn't want to be associated with disability or disabled people. Your honesty is just another lesson for me in the fact that it's OKAY to talk about being disabled, just being matter-of-fact about it and that it won't turn people off or turn my friends away - in fact I have learned more about my friends by exercising my new found honesty than I ever knew before and as a consequences our love and appreciated for each other just grows.

I hope you feel a little better about things soon ((HUG)).

kathz said...

I know Dickens isn't your favourite author but he repeatedly makes the point that proper values are not to do with economics. I reckon he's right.

You contribute to the greater good of the world by blogging: you question people's perceptions and prejudices and also bring enjoyment to your readers. You confront prejudice on a daily basis and fight it - that will help other people as well as you. You are in a strong marriage with Linda and matter to her (as she does to you). And you test vibrators and give useful advice on the subject.

Sounds like a benefit to society.

Of course, there are people who make lots of money - like George W. Bush, Donald Rumsfeld and Dick Cheney. On a cost benefit analysis, they might argue they are valuable. And that would show one of the many things that is wrong with their thinking.

Lisa Harney said...

Oh, plus, you wrote Zed, which people will no doubt read in the future.

cheryl g. said...

You also serve the vitally important function of pointing at things and loudly proclaiming that they are ridiculous. Someone has to ask the questions that the job training woman was so desperate to get away from. Someone has to stand up to the bullies and you do it very well.

I too am selfishly glad you are here...

Elizabeth McClung said...

Lisa: I do appreciate your encouragement and yeah, I was in a bit of a sucky mood but it was also a question I have asked over and over again and gotten no reply - There is a core of us who are poor and have a disability, or many - why are we shut out of even the process of determining what makes a good worker for those who make money off of the services provided - for example, for all those I listed, for the 40+ home care people I have NEVER had a survey, follow up form or "how are we doing card" - I have never been invited to give feedback on what is in essense, a service industry - Why is that, why are people with disabilities treated different than those who fly or stay in hotels or rely heavily on other service providers?

I do feel guily that Linda has less choices and more responsiblity because I am around - how can I not? The hardest thing to believe is that she says, "It doesn't matter?" I don't believe in survival as a means to an end; I demand that at least my life be more that it; I have to wonder if it is? Overcast much?

Zephyr: Oh good, at least I am not alone in doing it, and in going nuts. I do like the concept that we ARE a part of society and the society in disincorporating us is losing part of itself - much as you "cure" everyone into similarity and you lose your Van Gogh's and the like. Yes, I guess I must stay until another is trained to flash skull panties in my stead.

Zara: I don't know if you noticed that the Opportunities Fund specifically excludes victoria (I had found it a while ago and that did some more screaming at the computer) - why there is a federal program which EXCLUDES the capital city I am unsure, but it does not amuse. I like your idea of taking our cut and having our own PA/eye candy. I guess I am having pain day angst and I will keep fighting that, but also the frustration of, yes, I know you are all getting rich off illness, but what is it for?

Ruth: I want more! I don't buy into capitalism, I haven't chosen jobs by their considered esteem yet, they did have to be jobs where I felt I could make a difference. Right now, I don't even think the people taking the salary to "aid" me think or CARE if they make a difference. My rec therapist could have 100% of her clients unhappy at her, could never get them integrated recreation and she would be paid EXACTLY THE SAME - and likely promoted too. I can accept like Milton that there are those who must sit and wait - but with the burden of recieving there should be those who are blessed in mind and outlook by the act of giving - I don't see this in the many, many people who "assist" me (there are of course a few exceptions - but generally).

Marla: I think it might be better not to think about it - this is why in life I am an Eyeore (becuase I think about this too much) while I wish to be a Pooh-Bear even if it means being a bear of little brain - I mean, There is honey, there is friends - what more does Pooh need in life?

Elizabeth McClung said...

Alphabitch: Yup, you know when to bring me to a party, get me in this mood and I am an official "wet blanket." I think I am a little too heavy on the physical part of the plan and need more frivolity and passion - it is passion that makes you care about living, or rather care less about the type of mundane which seeks to paint the world eternal and profitable grey.

Gaina: You know, that is a great idea about testing product. Or doing something - I am not an advocate because I don't believe I can accurately represent a large group and because well, I don't play well with others. But trying out toys and then saying "Hey this is really great." Or "This sucks: see the attached 43 page list of exactly why" is something I could do (actually something I have done - when I called to ask for a home care worker to be removed I started giving them the 11 point list of why - at point three they said, "No, no, that's fine, you don't need to continue, she won't be there anymore."

Kathz: True, money doesn't mean worth - it is just sometimes I get very tired of being in a society with no money of my own where all you are judged on is your money or your ability to spend it - but that is North American culture seeping in on me - all money mad. My value is what I make it, it just seems (insert whiney voice here) a bit unfair that those who are charged with caring for the most vulnerable have the least oversight on them and the least incentive to excel at meeting client needs or making them feel valued in society.

zara said...

Elizabeth, I must admit that I momentarily forgot you lived in Victoria, sorry :(

And moreover, excluding Victoria ? WTF is up with that ??!! AFAIK, in Qu├ębec, things do not work that way. It just does not make sense to penalise people on geography. Yeah, I will bring up the D-word but that sounds like some sort of discrimation to me. I am appalled and will definitely write to HDRC about this, FWIW.

Lisa Harney said...

Yeah, the way the medical establishment treats people who need assistance is really awful. Amanda Baggs has written about just this sort of thing on her blog.

Also, there's some discussion on this Neurotypical Personality Disorder page, especially Staff Personality Disorder.

You say you don't want your survival as a means to an end, but what's the end, and what do you do to survive? I mean, feeding squirrels, getting your legs waxed, getting out to train in boxing, going to the arcade, trying out new vibrators, shopping for socks, being with Linda - isn't there more here than just pure survival?

Plus, Linda totally tells you the truth because she loves you.

I'm not trying to make it sound like it's all wine and roses, or minimize your real experiences. I hope I'm not repeating myself too much, either.

Zephyr said...

You know, the average employer wouldn't hire me either. I get sick a lot and my attendance is poor, and when I get sick, I have to stop working and rest and let the medication do its work, ASAP. My pain and meds can also interfere with my concentration. I'm ordinarily not a great candidate to help get back into the workforce.

However, the Opportunities Fund I think are the people who funded me through the EPPD (Employment for PWDS). I sold them on funding me because I intend to study and work from home as either a consultant or run my own business. Maybe you could do the same? Obviously neither of us can do 9-5 office jobs, but we're both capable of working from home in some capacity. The government needs to explore this option more for PWDs.

Elizabeth McClung said...

cheryl g.: yes, I do have the uncanny ability to cause almost immediate discomfort, Linda laughed at that section because she said she could just hear me relentlessly attacking basically the same question in different and creative ways and them doing everything possible to avoid answering it (and even more so, avoiding being responsible for the content on their own website!)

Zara: I do have to wonder if we are some sort of vortex, that Vancouver was made defacto head of BC while I was away. Live 40 miles away and NO FUNDING for you! Actually I am going to see if there is a parrallel funding for the arts for people with disabilities, or are we all competing together on that too?

Lisa: Yes, I have to hope people in the Future read Zed, once it is brought down to a reasonable price (or better yet, get if from your library for FREE! Seriously, get it free! I never signed up for residuals). I did enjoy the links you provided a great deal, particularly a link off one of those sites. You really do get around and find some interesting stuff. Okay, focus on more dreams and less pain. I do what I do because, well, I am me and I haven't figured out how to stop being me (nor really has anyone else, regardless of attempts). I need to accept what battles cannot be won and focus on those which can - I think finding equity in the system set up to ensure dependancy within chronic illness is something I can't fight - the beurocratic obsession which is Canada, I cannot fight (for example, I cannot have my doctor tell my home care workers I need oxygen, I must have him tell my VIHA case manager who must recommend it to the long term nursing support team who will decide what aspects and action should be taken and then send the "Task 2" delivery designation to the Home Care Manager - who is the person who just refused to take that same information from my GP but will take it once it has been processed correctly - we are 4 weeks into the process of trying to get home worker to put on my oxygen mask when I pass out and have yet to get past step 1 - as the Case Manager is either away, or has "not recieved that information" even when told directly by the GP) - I think the Russians actually learned how to be super-beurocrats FROM Canada.

Sara said...

"[I]f you exercise daily, eat a healthy diet, never do drugs and invest in education and your future you could end up in a wheelchair like me."

You know, as much as it sucks for you to be a poster child for this, it's not a terrible message to put out there. Besides a reason to really live life to the fullest as long as we can since we really don't know what tomorrow may bring no matter how virtuous we might think we are, there's the whole thing about not judging other people and not running around gratuitously or lazily making other people's lives horrible. Understanding that it could be anyone in the wheelchair at any time -- yes, even you with the freckles, or you in the back row -- and that making all the "right" choices is no guarantee against stinking bad luck may even be a starting place for compassion in many people who might not otherwise get there until it happened to them -- or even then, honestly.

So I can't help but wish you could go around and talk to kids -- and putative adults! -- about this. And I wish someone would pay you to do it, too, and also to consult about accessibility. These would be great uses of your giant brain and heart, and your disability would be one of your best qualifications for the job.

Lisa Harney said...

That bureaucracy is obnoxious. It's almost so bad that it could be a joke, except that it's real.

There's something seriously broken there.

Elizabeth McClung said...

Sara: as much as it would delight me to educate people in such a manner, to do so would not only go against the west coast ethic (I think every day there is another article about how if YOU do the right thing, eat the right thing, exercise enough the you WILL be healthy) but also go against the tenets of Christianity AND the whole value system of the current America. So, I wonder who would fund it? Or how I would avoid being run out of town. You know the part I love now, it is having a new doctor and his asking things like, "How many years have you been slurring your words?" And I'm shocked and mumble, "Three months..." - It is less than a year and already this is the only image many people have of me, the only way they can see or envision me, not just in the present but in the past too!

lilwatchergirl said...

OK, started a long comment and somehow lost it... It was about how much I hate 'Western' society's obsession with a person's economic value to society, and how I'm afraid of how far society might go down this road in relation to disabled people.

I don't know if you've seen, but we're discussing a lot of your points on the Ouch message board, because of reforms to the British disability benefits system. The discussion has got me thinking in great detail about what a disabled person is 'worth', and why the Economic Model - for want of a better term - just doesn't work for a lot of us. And how a less economically-obsessed society might go a lot further with disability rights and equality.

It is too bad that in Canada, as long as your partner makes enough money for both of you to be very, very poor, then they are required to pay for your costs.

The Girl and I are in a similar situation to this. It became our situation about five minutes after I moved in with her, which makes me incredibly angry. The Girl is insistent that I have far more value to her than an economic assessment of the situation would suggest. I can relate to your concerns, though.

belledame222 said...

it's very existentialist, isn't it? me, i'd ask first why we support assmunches who design delightful "are there no workhouses?" situations like you just outlined for us. i'd rather have you around any day. your blog posts, your wit and humor and smarts and empathy, are worth a thousand thousand times more than any number of "productive" individuals who, like--well see this for my favorite temp assignment ever. who was the biggest contributor to society there? the asswad who served as my temporary boss? hey, he makes money! creates jobs! sort of! allows other people to live! sort of!

...and you know, i get that you probably know all this shit intellectually but it's really hard to remember it when -everyone- around you seems to believe in this strange alternate universe where "value" is a Happy Meal. it's difficult for me, frankly, despite all that i just said (i give very good advice but very seldom follow it); i can only imagine the black place this came from, knowing that these people may hold not just your livelihood but your life in their hands, and how much of your time and energy is spent dealing with these cogs, these automatons...

it sucks.


"Consider the lily."

funny how many so-called Christians forget that one, along with pretty much everything their supposed worshipee actually -said.-

but it's true. what's the point of lilies? they don't -produce- anything. they're short lived. some people think they look pretty; does pretty pay the taxman? No? So the fuck what? The taxman is beside the point. The universe has gone on for quite a long while before our petty concerns and it's going to go on a long while after.

belledame222 said...

Holy crap, I wanted to move to Canada at some point as I thought you had a better system than us

i was starting to go, "yeah! me too!" and then realized you're actually from ENGLAND.

terrific. apparently Michael Moore is not the shining prophet i believed in *sob*

well. i dunno.

yeah, actually, this brought it home to me: the problem isn't even the system, although the red tape and organization and shit are all part of it: the problem is way too many people do -not- value what is really valuable, and they suck. if more people were less sucky, maybe they'd make a better system.

there. My Theory Of Everything, by me [brackets Ms. brackets]. i'm so totally patenting that. i'll make a fortune!...

belledame222 said...

to see an Amazonian redheaded wheelchair-user in corsets and faerie wings streaming down hills flashing their skull panties. That's a very valuable contribution to the world!


Elizabeth McClung said...

Lilwatchergirl: I think what angers me the most about the "co-income" assessment used for people with disabilities is that being a loving caregiver is now what being a mother used to be, only without the deductions, the assisted child minding, etc - they have already taken the choice away from your partner becuase YOU are disabled - they have determined how your partner should act, must act, must assist you regardless of the reality of the individual situations. It is bad enough that so many of the "horde" which exist administering and evaluating my chonic condition, but they pass the responsibility off onto somone else. If I have a bad weekend and can't sleep or eat or must be carried to the bathroom - my case manager or my OT, or my PT or my government disability assessment manager isn't staying up to 2:45 am, holding my hand until I sleep - nope they went home at 5:00 (or 4:00 because it is a Friday) because they already determined IN LEGISLATION that it is Linda's problem.

Can I win in an economic based society, where it is "survival of the fittest?" -

Belledame: The problem is also that these types DO think I have a value, I mean can't I maybe fold pamplets or enter data entry or the types of jobs that people hate doing but still need to be done, and free up the people in those jobs to help the chronic work shortage which is taking place in BC (which is why for example, working at a donut shop in Victoria is a starting wage of $17 an hour PLUS insurance benifits and dental - and even so places like Domino's and others have had to shut down on a few days a week because there are so many people retiring that no one wants to work in a hot kitchen making pizza for low wages anymore when, for instance getting me a meal and helping me eat it gets you $20 a hour).

The problem is that with a society where is it easier to smash all people with disabilities into the same square peg hole than accomadate the hundreds of diversity within people with disabilities (and where it will always be easier) - How can I get people to see beyond the chair and the slurring of words?

Jesus told us to consider the lily, but by the time Paul got there, it was, "An yes, us ministers should get paid and plenty thank you!" - The core of the teaching of Jesus is, who you are is seen in how you treat those who have no one else to protect or speak up for them. The basis of modern Christianity is: God loves you if you are either a success or moving toward success. God loves the person who ACHIEVES! (God never said this, Jesus was after all a drifter who sponged off women for food)

Stephanie said...

Well, I have seen one worker at a major public retailer in a wheelchair. There is a guy at Thrifty Foods in James Bay in a wheelchair who stocks shelves and rounds up the stacks of empty baskets from the checkouts.

As a disabled person myself (though not in a wheelchair), I have also pondered what my worth is in society. I suppose in one way, we are an economic stimulus since our existence and continued living provides employment for quite a few people. Thus, we increase the province's GDP just by being disabled.

I do volunteer work a couple of afternoons a week at a non-profit neighbourhood newspaper (for which the government gives me an extra $100 on my disability cheque). I feel that there I am helping to create something that has much more worth to society than I did when I was a well paid film production worker helping to make some of the most godawful movies that had no socially or artistically redeeming values.

Our economic value as human beings isn't necessarily related to our value to society. In your case, you are contributing much value by your writing here and at Ouch.

andi said...

Chiming in from the states. One of our major grocery store Chains in my area has several disabled folks working for them. Wheelchair bound and other disabilities. If you *really* want to enter the hell that is retail.
Also Call centers also hire many folks with disabilities..if you want that type of work.
As for what 'value" folks like us have. Well...I think the value of a human being is much more than a cost/gain balance sheet can ever tell. But that's just me.
Either way, hang in.

Elizabeth McClung said...

Stephanie: Thanks for letting me know about Thrify's - Linda says once they redo the fairfield one there should be enough room there for a wheelchair too.

I think, like you, I want to find something that provides value, or meaning but part of me wants that status back because everyone ASSUMES I have no employment, I want to say, "Well, I am the assistant director of blah blah" and watch their faces struggle not to say, "'re in a wheelchair." So much for my grace and nobility.

I glad you say that my writing here and Ouch has value as one my pieces is part of the training manual for caregivers - that means something I think - I do try and I know that trying isn't always enough, but I hope that somewhere, in boston or Essex, someone occasionally says, "You that Elizabeth I read on the net, guess what crazy thing she did this week?" - Yup, I aspire to be the equivilant of a beer mat info fact - a conversation filler!

Andi: It is not like I choose retail, it is just I return to the devil I know (at Christmas time no less! That is hell). Phone work doesn't do to well because I start slurring after about 30-40 minutes. I do like the idea that humans have an intrinsic value (you aren't talking about selling organs on ebay are you?). I just wish I knew what it was? Thank for the encouragement - ever onward - and if you think I am all gloom, try a few posts back about "Swimming with the dolphin; a disability girls guide to vibrators"

belledame222 said...

which is why for example, working at a donut shop in Victoria is a starting wage of $17 an hour PLUS insurance benifits and dental


sorry, i know that wasn't your main point, i'm just reading that from the States and...


so what the hell is our problem?

hell, i'd work in a donut shop for 17$/hr, (plus benefits!) no problem!

d'you know that at least in some states here, if you wait tables you don't even need to get the minimum wage, because you get tips, lucky you? do you know what the minimum wage -is-? they just -finally- agreed to raise it to seven dollars and change over the next -two years.- it was the first raise in over a decade. it's been..five fifteen an hour. some food servers officially get like two something an hour. and there are all kinds of ways to -not- get health coverage even if you're working full time--if they want to give you not quite the number of minimum hours, say, or if you're an "independent contractor" whose job unofficially, suspiciously resembles the fulltime gig that was just axed. i bet there are other "exemptions" i don't know about, and that's not even counting the illegal under the table shit (but of course they're ruining everything anyway, the "illegal people")

sorry for the rant and the derail, that's just...damn.

belledame222 said...

Jesus told us to consider the lily, but by the time Paul got there, it was, "An yes, us ministers should get paid and plenty thank you!" - The core of the teaching of Jesus is, who you are is seen in how you treat those who have no one else to protect or speak up for them. The basis of modern Christianity is: God loves you if you are either a success or moving toward success. God loves the person who ACHIEVES! (God never said this, Jesus was after all a drifter who sponged off women for food)

"Would Jesus Wear A Rolex On His Television Show?" sure. and Paul was a putz. nonetheless.

we're starting to see a resurgence of the religious left--groups like Sojourners for instance, and other, less visible but even more progressive groups, Christian and otherwise. I wish they had more weight than they do, esp. compared to the decades-in-the-making behemoth that is the religious right, but it's a start.

Daisy said...

"[I]f you exercise daily, eat a healthy diet, never do drugs and invest in education and your future you could end up in a wheelchair like me."

You know, as much as it sucks for you to be a poster child for this, it's not a terrible message to put out there. Besides a reason to really live life to the fullest as long as we can since we really don't know what tomorrow may bring no matter how virtuous we might think we are, there's the whole thing about not judging other people and not running around gratuitously or lazily making other people's lives horrible. Understanding that it could be anyone in the wheelchair at any time -- yes, even you with the freckles, or you in the back row -- and that making all the "right" choices is no guarantee against stinking bad luck may even be a starting place for compassion in many people who might not otherwise get there until it happened to them -- or even then, honestly.

Amen! I was thinking, you are EXACTLY the person to go the schools and teach the children one of the hard messages of life: Nothing is certain but death and taxes. Life will go on if you don't get into Harvard, really it will!

And yes, you are beautiful and smart,which is worth more than all the boring, unimaginative corporate drones in the world. Do not compare yourself to these people! They are not worthy to share your airspace!

And my final, uniquely post-menopausal comment: which vibrator should I buy, then?

Daisy said...

And I've been told "The Disney Store" deliberately hires people in wheelchairs. Dunno if they have those in Canada? They sell Donald Duck coffee mugs and Mickey Mouse T-shirts at horribly inflated prices.

The person who told me this is a full-time wheelchair user and was deliberately recruited by Disney to work on the sales floor. He worked on commission, and therefore really had to hustle. As a paraplegic, he didn't have too many issues with low-energy, but still found it somewhat physically taxing. (I don't think he made any attempts to work only part-time, so that might be an option?) He actually enjoyed the job itself, except for the annoying Christmas-commission hustling.

Anyway, thought I'd mention it!

Elizabeth McClung said...

belledame: want crazy money, move to victoria. Get this, the government will pay off your entire student loan if you work for them for just three years (and they pay you your full salary too). Doctors get $40,000 off their loan if they become a GP. Um, the woman next door used to be a professional but quit and cleans rooms at night because it is easier with short hours and more pay. I think mechanics make $60-75 an hour. I know that in the US home care is about $7 an hour while private hiring here is $22-35 depending. Ironically, though the Canadian dollar is higher than the US, for example I have to buy a walker, because they need the one back I borrowed - it cost $329 retail in the US, you can get it for $280 in the US but to get it from a medical supplier in Canada (and thus get insurance to cover 80%- $500) - I don't understand why but that is how it is.

Daisy: Yes, it is just I think of Disney and the Devil on Earth - and if they have a regulation number of piercing I can have, I'd go and get more. AND a purple STREAK down my HAIR AND Henna tattoos on every part of my visable body. Sadly there isn't one here - I think Seattle is the closest.

I will however go around and say to kids; random crap happens, and yeah, it is going to mess with your head but you know what, your life isn't over - which would be more convincing if I didn't break down in tears and starting going "It IS OVER, oh my God, why don't I just kill myself?" as sort of a climax to the talk. Haha - that actually made me laugh, I would WANT to do something like that - because even if I don't have it all together, doing something like that is both SICK and FUNNY.

belledame222 said...


sort of reminds me of Dilbert's take on motivational speakers: a kind of unwashed, troglodyte-looking guy in an ill-fitting suit, droning,

"You should, like, work hard, so you don't get fired. Any questions?"

andi said...

Elizabeth, Definitely NOT talking about selling organs on ebay! I don't know how to explain it, but to me people have value because they are people...not because they walk, talk, see, nameyourconcernhere, people who ever they are- how ever they are made are worth more than their dollars and cents "contributions".
I'll go even further and submit that a person's real "contributions" have nothing to do with money.

em said...

People have made all the comments i would have made, if I had gotten to this post earlier.

So I'm just going to say that if the situation were reversed you would be supporting Linda and I would be very surprised if you would be bitter about not buying a house (I mean bitter at Linda, not the government-those bastards.)

And further, in the midst of your difficulties, you reached out to me with kindness. That is valuable as all hell. It's valuable to me, and it's valuable to all the others I know you are reaching out to, too.

Sage said...

Elizabeth, would you mind if I read this post to my class (grade 12 social issues)? We've been discussing the illusion of the level playing field, and later we'll be tackling discrimination. I won't use it without your permission.

As others have implied, one value you clearly add to the world is an ability to educate and/or entertain others like in this blog and the web of connections it creates. But I don't believe being productive is at all a necessary condition of being valuable.

Elizabeth McClung said...

Andi: Oh, bummer, I was hoping for some quick green! I think I see what you mean, but there is a part of me that says: quantify - and in North America the only things people seem to mark are money and/or fame. I guess I want to know what do I bring to the human family except to be the sibling who teaches the others about "responsiblity" because I have to be cared for.

Em: True, I would probably stay, I'm sure I would, but if I had to choose I would rather be the rock that is always there for Linda than the anchor dragging her down.

And you are right, I would much rather have real interaction, even online with someone than just "Here, have a dollar" - the interaction is more important to me.

Sage: Please, help yourself (and add in as many more people who make a living off of PWD, I know I left out a LOT). Well, since I am not very productive, so I would certainly like to be valuable (who wouldn't!)