Tuesday, April 10, 2012

"The System" Or, The One Where I Am "Just Like Everyone Else," Except When I'm Not

Disclaimer: It's RAGE time again! Did you miss me? You know the drill. I rage, I swear. Get used to it or go home.

Also, this is a long one and there’s lots of tangents in it, but they are all important, because I didn’t know how much you needed to know. So. Feel free to take it in bits and pieces.

Oh, I am about to get SO much hate...

Because, people hate us. They really do. Those of us sponging off the government, I mean. Oh, how they hate us.

*sigh* Here we go.

So, a couple months ago I took a media course as part of my university courses. In that course, we were asked to choose a facet of the media to explore and examine, either in chronological or thematic order, and I chose the presence of disability in the media. I thought it was something that I knew about that a lot of people didn't, and it would be a good topic, since it is one often ignored completely.

It was a good topic. I got a good grade. It did not help with the depression.

It was months and months of wading through articles with headlines that read, "Blind student achieves top honors" where the article contained all the nauseating hero worship you find in such things, and quotes that read, "It's not that producers don't want to hire actors with a disability, it's just that there really aren't any good roles being written for them." While Kevin McHale giggles about the fact that "people actually thought I was disabled, OMG weird!" And then I found a few articles of particular interest to me. They were recent, and Canadian, and outlined a so-called scam which cost the government billions of dollars.

The scam was, apparently a company was posing as a charity, was getting people with disabilities to pay huge fees, and then doctoring paperwork to ensure those people got the maximum amount of money, with themselves taking a percentage.

Okay, here's what was actually happening:

This company had apparently begun its life as a charity, but eventually, had to start charging fees to avoid going out of business. Which it started doing about two years previous to this incident, apparently. The particular benefit being offered is not one I’m familiar with, but if it’s anything like say, the Disability Tax Credit, it had very strict guidelines of who could apply, and for what, and every form has to be signed and read by a doctor familiar with each applicant. Like everything else involving asking the government for money, it involves a lot of intimidating paperwork, and long waits. As far as I can glean, this company actually meets with the clients, who do pay for the service, to fill out the paperwork on their behalf and with their input. Which is a hell of a lot more accurate than leaving your paperwork with a doctor to get back to you in three months or so. Let’s try really hard to wrap this around our heads, shall we? Doctors know things about illnesses. They chiefly know about sickness, and how to end sickness, and the symptoms of a sickness, and the progression of a sickness. They also know about injury. They know the way an enabled person's body is put together. They understand that when something breaks or is damaged in that enabled person's body, there is an ideal way in which it should be put back together again.

Disability is neither sickness, nor injury.

Okay, admittedly most people with disabilities probably see doctors more than I do, as I am mostly in decent health. But people, including doctors, tend to forget many of us don't have progressive disabilities, and our illnesses and injuries are often no more related to our disabilities than our hair colour is related to our eye colour. Yes, I trip and fall and bruise myself more often than most people. I don't bruise more easily. My bones break when I fall, I fall because I have CP, CP does not cause broken bones. My doctor is not my specialist. She is my doctor as yours is yours. We are long gone from the days where we all lived in hospital care our entire lives. And good riddance to them. I have no idea why we still have this archaic practice of asking a doctor if we're really really really sure this person is disabled, when it is the person, not the doctor, who is ordered to ask for help, while doctors are reluctant to do so since they’re not specialists. I understand the need to prove a legitimate disability. When applying for OSAP I sent my ODSP paperwork without complaint just like everybody else. Because I could do that, because I receive my ODSP paperwork, and what I do with it, is my responsibility. Because somebody has to take responsibility for this disability of mine, and, while there is inherent unfairness to that, I would rather it be me than anyone else. I was born disabled. So I was eighteen when I was put on disability. The day I received my first cheque, I turned to my mother and said, "Okay, so how do I get off it?" and she said, "Honey, don't ever ask them that. You work hard and do whatever you want to do, but for God's sake, don't ever tell them you want off it."

Sorry, Mom.

I want off. I want that to be possible more than the average enabled person wants to win the lottery. It’s about as likely, too.

Here's the thing about me. I do work hard, and, in a lot of ways, I do get to do whatever I want to do, more so than my mother and every doctor I've ever had has ever imagined I would. And “the system” is still in charge. Because ODSP has a rent cap, a maximum allowance for housing, I live in a small town I hate, with people who have known me since I was six years old, and still look at me from the limp up. A small town that has no public transportation, and no disability-centered recreation programs, and a miniscule amount of non-physical jobs on offer. Because ODSP has a maximum savings allowance, I cannot save for anything important, like a house, or my own education, and even if I did, all of my assets would be in files where ODSP could decide, not only how much I earned, but what I get to keep. Last year, I wanted to go to film school and couldn't, because in my position, I am unable to get a line of credit, and I’m not allowed to save that kind of money myself. They take a full 50% of everything I earn, and expect regular updates on how much I am earning, and if my paperwork is so much as a day late, they have a handy automatic process, and you just don't get paid til it comes in, and they can be bothered to send it to you.

I do well. I am pursuing post-secondary education. I was always able to do a lot with a little, so I have some fairly high credit cards. I have a decent part time job that I enjoy, and where I am only occasionally reminded I am not like other people. Whenever my savings does hit its maximum allowance, or I don't owe anything on credit cards, I do some travelling. I'm single, and so far my only dependents are my dogs. I live on my own. It's not a terrible life. The problem has never been that it is a terrible life. The problem has always been that it is not mine. That when I wanted a place to live, I had to go before a committee, and convince them that a group housing situation would not work for me. That when I wanted a job, I had to go through another committee, who then had to decide if I was ready and willing to work, on their terms, before I even spoke to a potential employer. And that before I approached the employer, someone else did, supposedly, on my behalf. I would like to have children someday. But right now, I don’t know if that will ever be possible. And apparently, I am one of the few who got it "right."  As I am told, condescendingly often, I am not like those other people on Disability, just as I am not like those other people who have disabilities (funny, that, isn’t it? Nobody ever sees the connection between those two things.) I am told, often by those same strangers who see me from the limp up, that I work hard, and I am smart, and I should be proud of what I’ve done. I should be proud. I should be allowed to be proud.

But I’m not. Because every once in a while, depending on the person, the circumstances, whatever, stuff comes out. I am asked why it is that I get to go to Europe while I am on Disability and should be receiving the minimum needed to keep me fed and clothed (yes, people do say that. Yes, they say it, in exactly that way, and right to my face. Yes, these are people I know.) If a friend or family member is struggling with their finances, and I offer sympathy, because I also struggle, the response is usually, “Yeah, I know. It sucks.” But sometimes, “Well, you’re lucky, at least you’re on Disability.” And even, if I don’t know the person very well, “Well, you should feel grateful you at least have Disability to fall back on.” On a few memorable occasions, when I have been ‘proud’ in front of the wrong people, I get, “Yeah, but it’s not really your money, is it?” And everytime that happens, I want to shake the living crap out of the person, I want to slap zir across the face and ask when the last time zie was told to feel grateful for the opportunity to ask for help from people who don’t actually want to give it, and need to make sure you understand that you have to be fairly pathetic to need it first. And you know what sucks? I don’t even have a body that would allow me to shake someone. My mother’s advice about not telling people how much I hate the system was not her first advice regarding ODSP. Her first advice was when we were applying, when she turned to me and said, “Don’t do what you do at the doctors office. Please don’t tell them you’re fine. I know it’s hard, but you have to tell them how bad it is, and you have to tell them everything, or they won’t want to help you.”

All of this is relevant. All of it makes me angry. All of it is important. But none of it is why I am angry today. So here’s what happened:

I am on ODSP with a part-time job, but as a full time student, I am exempt from losing 50% of my pay cheques to ODSP. However, they can apparently still cut me off if I don’t hand in my pay stubs on time. “On time” is part of the problem, since your pay stubs are always two months behind (ODSP comes at the end of every month, not the beginning, and I hand in the pay stubs for the previous month before that, but I have to hand them in before a certain date or my file is put on automatic hold. Understand? Me neither). Since February is a short month and I was two days away from getting paid on the due date, I was a couple days late with my pay stubs, and sent them in a week before cheques were due. I didn’t get paid on the day I should have, but I had expected it to be late, so that was fine. When my landlord called a week later, and asked why her ODSP cheque hadn’t come in, I told her I wasn’t sure, and called them. Where my worker told me I hadn’t handed in my pay. I reassured her I had. She checked again. “Oh! Here they are! I must have misfiled them!”
   “Really?” I said, “Because I dated them.”
   “Yeah I see that. They were late.”
   “Right, but they had the dates right on them.”
   “Yeah... You’ll get your cheque in a few days.” A few days. And this is halfway through the month.

But whatever. I have a job, I know my rent will be paid, my bills are caught up. Responsible with money, remember? Good at being broke. So I let it go. This month rolls around. I don’t get my cheque for this month. Which is odd, as I remember handing in my pay. I call.
   “I don’t have your pay at all for last month.” I sputter, for a second, in a panic.
   “Wait, how do you not- I handed in a lot last month, and two this month. You have all of them.”
   “Can you resend them?”
   “No. I always throw them out afterward, otherwise I get them all mixed up.”
   “Right. Um. Well. I don’t have them. I’m sure I don’t have them.”
   “Well you must.“ and I’m frantically trying to wrack my brain, trying to work out how I could have sent her the wrong pay stubs, what I may have done wrong, and she goes,
   “I’ll have another look.” and I say,
   “Thanks.” and hang up. Twenty minutes later, she calls back,
   “I found them.” She said, “you sent them early, so they were with the others.”
   “Right, because I always send them all at once.”
   “Right. Well, it’s all fine now, you’ll get your cheque by Monday.”
   “Okay.” She hangs up, and that’s it. No apologies, and that’s twice she’s tried to blame me for her mistakes. That’s twice I’ve almost blamed myself for her mistakes. Oh, but we’re not done yet.

Monday rolls around, and still no cheque. So I call ODSP, skip going through my worker, and go right to the head office, where I must have sounded pretty terrible. I don’t remember my exact words, but I do remember that I told her that because of my worker losing my paperwork, my cheque is late, and I was told it was to come in today, and it hasn’t, so when is it coming in? And I know it was bad, because for the first time in my life, the people in that office jumped. The person on the phone stammered that I should really talk to my worker, she would go find her. She left me waiting on the phone for about fifteen minutes then came back and said, “She’s on break, so I have no idea where she is, but I’ve looked at your file. It should be in later today, or tomorrow. If it’s not, please call us.” Which I assumed meant, because that would mean something is really wrong. So I said,
   “And if it’s not in by tomorrow, and I call you, what then?”
   “We’ll sort it out, okay? Don’t worry.” And because the secretary of the head office is usually not someone who deals directly with clients, (though apparently, neither does my worker, har har) I let her off the phone.

Still here? Still not done.

So, later on that day, my landlord calls to ask if I will be paying her myself this month. See, if I made too much money, before I started school, disability would halve my paycheque and there wouldn’t be enough left over to pay my landlord, which means they send the full amount directly to me. It really only happens during the holidays, since the rest of the year I work part time. But it does happen. Interestingly, if you’re a day behind sending in your pay stubs those letters telling you you’re cut off and may need to speak to a tribunal go out “automatically” but no one thinks to send you a letter that says, “Hey, so please make sure to have your rent money socked away because you’re getting a full cheque this month.” and they’re all very convinced that ODSP sending the cheque to your landlord is a surer thing than just doing it yourself. Because we all keep copious records of our income, but not one of us can manage writing a post-dated cheque. So I explain to my landlord that disability has lost my paperwork again but they swear up and down that they’ve found it, and cheques have gone out, and should be arriving any day now. My landlord’s response?
   “I don’t understand how they can just cut you off. If it’s their mistake, how can they just do that?”

Have to stop here for a sec, because that sentence, right there, is a large part of the problem, and I hear it all the time. My sister called me up one day to ask me how much disability raises your cheque if you have a baby, because her friend is pregnant and on disability. At the time, it was $200, and now it’s nothing. (There are apparently good reasons why it’s nothing, but I don’t have kids, and if I have to read any more of this nonsense than necessary, I may headdesk hard enough to cause another hemorrhage. Who knows where I’d be then?) So I told my sister what the maximum rent allowance was and she said, “but that’s ridiculous. She needs a two bedroom apartment.” and I said, “They don’t care. That’s what it is.” and she said, “But that doesn’t make any sense. That’s not fair.” At which point I took three deep breaths, counted backwards from ten in my head, and said, very slowly, “No. No, it’s not.”

It’s not fair.

Disability is not fair. It’s not fair to us, anyway. It wasn’t designed for us. It was designed so that the people who are not disabled are able to feel good about paying money they don’t really want to pay to people who need it, and may or may not deserve it depending on your personal feelings. Because disability is nobody’s fault, but, like I said, somebody has to be responsible for it. It was designed because it’s cheaper to pay us to stay below the poverty line than it is to build a society where we can be responsible for ourselves. It was designed for you, the enabled, and, like my landlord, like my sister, like my boss, you believe it works, because my life doesn’t suck. You believe it works because I work hard to make it look good, because I am grateful, I do know how lucky I am, not in the way you think of it, but because I am one of the people who are able to work, able to live without attendant care, and who never bought into or was forcefed all the socialization that makes us ultra passive dolls who are just happy to “contribute to society.” You tell yourselves “at least it’s not welfare” (which is a whole lot of problems in and of itself) and mostly, you think it works because you don’t understand how it works.

Back to my landlord. Because the next words out of her mouth are, “Is she going to increase your rent this month?” My landlord upped my rent three months ago. I was instructed to send in a letter to ODSP from my landlord, which I did, and they would increase the cheque they send to her. Since I don’t pay my landlord, I had no idea she wasn’t getting the right amount. So I apologized. I reassured her I did send the letter. She tells me,
   “Yeah, I know. I called, she said she’d got it and she’d take care of it, but she never did.”
   “I’m really sorry,” I say. “Honestly, this worker I’ve got is really unreliable. I did some screaming. I’ll deal with it.” My landlord laughs, and apologizes for adding to my stresses, and we hang up.

So. That’s my Monday. Now, before anyone starts on me, this is not isolated, or rare. My cousin is also on disability, and has similar problems; missing paperwork, not getting a full cheque when she is eligible, and a worker who is constantly out of the office, sometimes for weeks at a time. A friend of mine is constantly fighting her brother’s battles for him, because there is a constant fight over what he deserves, and who should be responsible for it. This is what you’re asking us to be grateful for.

Go back through my story, and think. Think about how lucky I really am, before you remind me to think of it for you. Think about how I’m lucky enough to need no physical therapy, or assistive devices, that require maintenance I’d have to pay for, and/or wait for. Think about how I have a job, so a cheque a few days late won’t impact me much. Think about how my landlord is okay with waiting. Think about how “hard I work.” How I’m one of the few who is, because she is able to, doing Disability the “right’ way, and the impact it might have on how people see me.

Then think about how my worker hasn’t apologized. Think about how my landlord doesn’t understand ‘how they can just do that.’ Think about how quick I was to blame myself, I, who have never bought into the socialization, because I am not like the others.

Then take five minutes, and think about the others.

In 2003 I was receiving As in every class in a course that admitted only 75 students a year. So the Registrar was surprised enough to ask, when I dropped everything. I couldn’t tell her. I couldn’t tell her about months of being passed back and forth between program head and disability office, of “this is not my area” and “I’m not sure what you want me to do.” until finally, they gave me a choice. Stay, and pay, to study, and learn, and never graduate, or go. And by then I was too shell-shocked and battle scarred to argue, and I just left. And when she asked, I could only mumble, “personal stuff.” Because I couldn’t tell her, I couldn’t face having to say I was like ‘the others’ after all. I was too ashamed. And I stayed ashamed, until last year, six weeks before starting school again, when I confessed my shame to a dear friend, confessed that what bothered me most was that I had been wrong. Everyone had told me this was impossible, I should have listened, but I was stubborn, I had fallen on my own sword, and then run like a coward. He said,

“Don’t you fucking dare.

These were the same people who told you you couldn’t learn to walk. The same people who said it would probably be better for everyone if you were in special ed in high school, even when you got straight As in public school. They told you you couldn’t live on your own. How the fuck were you to know when they’d get one right? If somebody should have done something, it wasn’t you.”

I am not ashamed now. I am angry. When I came home afterward everyone I had ever known was as stunned as I was, even the ones who thought I would never actually finish. They kept saying, “How could they just do that?” But “they” do it the way everyone else does. Because this system, as it is now, is designed for us to fail. It is built so that we’re comfortably on the losing side, and we are taught to be good sports about the whole thing. It is built so that everyone is “doing their best” but nobody has to do a whole lot. And everyone who manages to beat the system is meant to feel so grateful, so special and rare, that they never even think about the how and why things were different for them. We’re a political tactic so complete and complacent, we never come up in politics. People ask me why somebody as political as I am never votes, and I always say the same thing, “There’s nobody speaking for us.” I have had enough. Somebody get me a fucking megaphone.

If you have a story, tell it. If you don’t, post this everywhere. I’m done being ashamed, I haven’t got a whole lot of pride left. I don’t care. We don’t talk about this often enough. Too many people don’t know, don’t understand, might want to help if they did, and if they don’t, well, at least nobody could lie anymore about who was on the right side. This system is broken. It wasn’t made for us, it wasn’t made by us, so it shouldn’t be our responsibility. Like so many other things. But like so many other things, I am fucking tired of it going to someone else.

Pass it on.