Thursday, October 4, 2012

Examining Non-Typical Behavior part III: About "Teaching" and "Teachers"

And here we are again! Sorry it's been so long. Exams coming up. But I promised you one of my FAVORITE myths. Pay attention to this one. It’ll help a lot.

Myth 3: If you just teach a non-neurotypical person, they can learn how to be "normal."

Brace yourself, because I am about to say one of those really offensive things we are repeatedly told NOT to say.

You are not normal.

The problems with the assumption that a person with any kind of disability can be "taught" to function appropriately by a kindly and patient person who does not have a disability are so numerous that I could write several thousand words of rage covering the subject and still not be quite done with it. I promised myself I would not rage in this post, so I won't be doing that. What I do want to focus on with this is the assumption that any person with a disability obviously functions at a lower social level than any person without. Enabled people, round the world, listen up: 

You are not normal.

You have your own hang-ups, habits, and fears. You are sometimes over-sensitive. People have hurt you. Your expectations have been challenged. You have self-esteem issues. Your sense of self can be threatened. You can be passive-aggressive. You can have a morality message you deeply wish to impart. You are flawed. Whatever the reason, you are not always good mirrors of society as a whole. People who are non-neurotypical tend to try to behave toward individual people, the way they have been treated by those individual people, which goes back to why putting on social roles is so difficult for us to master. It also explains why we cannot treat you as you would treat other people.

Example: I once had a very passive-aggressive friend. She was one of those girls raised by women to believe that the reason those women did not treat her well was because, deep down, all women hated each other. So she was always very snarky and sharp with me, and unconsciously combative or competitive with me in public. I of course, could not, and did not compete, because I was mostly uncomfortable, but in private, when I was snarky, sharp or combative with her, she suddenly found that behavior offensive, and took to telling me the way I spoke to people was rude and I really needed to follow her lead, because I had no idea how horrible I could be. This came about because I honestly did not understand, in my high school years, why someone who considered me a friend would want to hurt me. Assuming she didn't intend to hurt me with things she did and said, as she said she didn't, I didn't think of my behavior toward her as being hurtful.

Same sort of thing, my dad and I had a hell of a time in my teenage years, because he was constantly telling us off for tiny little things, while regaling us with stories of his misspent youth driving motorcycles, tormenting college kids, smoking pot and dating three girls at once. Compared to him, I was a relative saint, but most kids know not to remind their parents that. Not so much me.

If you are hurt by something a non-neurotypical person does or says, I'm not saying, "Don't say anything, they can't help it." I"m saying watch your language. Lots of people with mental disabilities or other neurological differences take things far more literally than the rest of you. Ignoring it completely does not make it null and void, there are going to be times when you're going to be embarrassed by something zie has to say, or does, and just like with other people, you have to pick your battles. Say things like "I am pissed off right now." not the kind of thing I hear most often, which is, "I know you can't help it, but other people..." Because firstly, you don't know every other person, and non-neurotypical people are likely to take that literally, and assume every other person in the room is pissed at them, and secondly, we don't need you to do us any favours by putting up with us. It's just as hard for us to be friends with you. Social interaction is hard. We think you're worth it.

If we are not worth it to you, don't bother, we'll get over it. We don't look to you as teacher or as inspiration for what could be possible in our lives. Some of us are lonely, but it's not because there aren't a lot of people in our lives. There are a lot of people in our lives, and many of them take liberties they shouldn't. If we like you, it is because we think you are a good person we actually have things in common with. If you refuse to see a non-neurotypical person as an equal, well, my personal feeling is you're a pretty shit person, but experience has taught me, more than that, you are not worth the effort you require of me.

I'll be elaborating on the complications of the notion of the "teaching" and "inspirational" models of people with disabilities, as soon as I can get off my behind, and am not neck-deep in essays.

See you soon then!

Wednesday, August 22, 2012

Examining Nontypical Behaviors Part II: How To Behave In Public

Hi! See, I said I would be back, and here I am, I am getting better at this already! So again, I’m going off my own limited experience, and that of my friends, so if I miss something, or it’s different for you, please do add it in comments for me. This concerns the way non-neurotypical*, and also otherwise disabled people are talked about, and around, and most often at, and never really *to*.

Myth 2:  Non-neurotypical people don't realize they are behaving inappropriately, and if you tell them, they will stop.

Fact: Okay, this one's a bit dicey, if I'm honest. (And I always am, haha.) Imagine this for a second: You're invited to a fancy dinner party. You get all dressed up. When you get there, everyone else is dressed in their nicest clothes too. But when you sit down at the table, and the salad comes, there's no cutlery. People are eating, in their fanciest clothes, with their fingers. So you start doing it too, slowly and carefully, and trying not to look like you've never done this before. Then there's spaghetti and meatballs, and no cutlery. And then everybody starts eating with their fingers. They're all making a mess, sauces dribbling down their chins, clothes all stained with tomato. You're looking around, confused, for a minute, and you don't want to do it, you really like these clothes, but you think, "Oh well. Everyone else is doing it, must be fine." So you start eating with your hands. And you're getting into this, and getting comfortable, so that by the time dessert comes, you take one look at the big chocolate cake and you think, "Awesome!" And, completely missing the tiny dessert fork, you stick both hands in it. While everyone else looks on in horror. Because the fork is right there, and surely, you're not an animal.

That is how it feels for a non-neurotypical person all the time. Just when we think we have a handle on how things work, the rules change. We have to learn one set of rules for family and home, and one set of rules for the super-religious aunt who comes to visit once a month. We have one set of rules for the people we work with, but another for the boss. One set of rules for a boyfriend or girlfriend, another for casual friends, another for close friends. And to add to that, people who know about the diagnosis treat us different, from people who don't know, from people who actually understand what the diagnosis is, etc. So emulating other people? Is out. It is exhausting.  For you, it comes naturally. And we see that every day, but we don't see how you are doing what you are doing, and you can't tell us, if we ask, because it comes naturally to you. Just because you watch the same magic show 100 times, doesn't mean you're going to work out how to do the tricks. Some things we will remember, some of the time, but each time we make a new friend, meet a new person, find ourselves in another situation, what you call ‘common sense’ changes. Reminding us might help at that second, but it’s not likely to stick. Sorry.
This ties nicely into myth #3, which is one of my personal favorites, as it applies to any person, when they are friends with or working with, or tangentially aware of a person with ANY kind of disability or mental illness. Which I will get into sometime next week!

Still haven’t mastered actual deadlines. But I’m getting there!

* My love tells me there are better words to use than non-neurotypical, as it centres neurotypical as "normal." and so my language may offend people. I am, however, stubbornly atypical in all things, and like it that way. So the rest of you can go ahead and be typical, while I am over here playing with the fun crowd!

Wednesday, August 15, 2012

In Which I Embark On Something New

I have a hard time with this blog, because I talk too much. It's the exact same problem I have with Vampires. It's TOO LONG. I cannot possibly get it all right. So I decided, about a month ago, to chop it into smaller pieces, and then publish those pieces independently. It's working out really well. I don't want to shoot myself in the foot, but Book 1 is almost finished. So I think I will try to do that with this blog. Chop up longer posts into more manageable pieces.

To that end, I begin a series of blog entries.

I've been thinking a lot about Asperger's syndrome. Specifically, I've been thinking a lot about the fact that I don't have it.

I think.

I mean, I think I don't have Asperger's syndrome, if it's a syndrome in and of itself, but it's entirely possible my Cerebral Palsy is masking Aspergers syndrome, or I have a more severe form of Asperger's, which explains how I am able to do things most people with Cerebral Palsy cannot do. I am thinking about the fact that Cerebral Palsy is a catch-all term for brain damage causing muscular spasms and limited movement, and though it is considered to be a single thing, it is actually a collection of symptoms as many and varied as the ndividuals who embody it, not so much a condition but a symptom of a condition, in and of itself, and that we did not know that for years, and that Asperger's is similar, and also has similar symptoms, and it may be that I have Cerebral Palsy that behaves as Asperger's does, because similar parts of the brain are affected. And much of the time, I am thinking about the fact that I have an obsessive personality, and I will never never never know for sure who and what I am, and how, and sometimes, that has the ability to drive me more crazy than I am. I mean that literally, I sometimes sit and have panic attacks, not because there are things I can't fix, but because there are things I will never know for sure are actually broken. Sometimes.

But not all the time. Now that I can, with comfort and confidence, write about people with disabilities (I flatter myself to think that it is comfort and confidence that I am writing with, when it is, actually, simply the age-old "writing what you know"), I tend to write about nonspecific disabilities. Christine, for example, in the Damn Vampires, believes she has a rare sleep disorder called narcolepsy, when what she has is a strange virus, which is slowly turning her into a vampire. Last year's Nano, which I may or may not work with later on, featured twins, one of whom was decidedly not neurotypical, though no specific diagnosis was ever presented. I thought, particularly when writing this character, that might be considerably problematic. Part of the problem of being a person with a disability, is legitimizing that disability for other people. But the fact is, there is still a person under every diagnosis. And while I can appreciate the importance of a diagnosis in a medical sense, or in the sense of knowing what to do and what to expect, and certainly in the sense that society will hate us if there is no discernable reason to pity us, in a sense of intergration with wider society, a specific label does more harm than good.

This is what has me thinking about Asperger's. Because lately, it has been showing up a lot in the media, and usually, it's under the guise of "A guy who is a complete asshole but doesn't mean to be, and is totally antisocial/doesn't feel anything." And I feel, not only offended, as we're coming to the realization that it is not just a "man's condition" and also not that simple, but I feel a bit like we're all jumping the gun here. Nice as it is to see Asperger's portrayed at all (though generally by neurotypical people, which is. Oh, I could rage for several pages), it's a bit like what happened when psychiatrists uncovered schizophrenia and dissisociative identity disorder, and thought for years they were the same condition; we suddenly had a bunch of movies about the poor little crazy people, who killed because "the voices told them to do it," as if "voices" was, not only the defining characteristic of a person with the condition, but the only characteristic. Same with OCD. Until very, very recently, like, in the last five or so years, any film or television show, or vague mention in the media of a character or person with OCD, that person's only two symptoms were repeated handwashing, or repeating himself or herself (usually himself. For some reason, crazy women fail to illicit sympathy. Funny, that.) In fact, I had a friend with OCD who was germophobic, and as sensitive as I tried to be to her condition, whenever I had an issue of my own, she simply refused to believe I had OCD, because as "everyone knows" all OCD patients are germophobic. So all this saturation in Asperger's is a two-fold thing for me: Firstly, I think it's lovely that we are being shown non-neurotypically, but, as with most disability portrayals, they're not at all accurate, and I think, in about ten or fifteen years, we're going to be a bit embarrassed by them. At least I hope so.
So, as far as I know, I don't have Asperger's, and I'm not going to claim that I do. But I am not neurotypical, and I have many friends who are not neurotypical, and some of them have Asperger's, and some of them don't. And some of them have a diagnosis they will share, and some don't. But I did want to write a few helpful tips about the incredibly wrong assumptions neurotypical people tend to make about "others." So here goes.

1. Myth: Non-neurotypical people will say rude things, but it's okay because they don't mean it.

Fact: There are three parts to correct in this little untruth. Non-neurotypical people are not rude by nature. It's just our brains are wired differently than yours, and it's a bit exhausting for us keeping a filter all the time, and so sometimes, things slip out. Once, after a fight with a friend, where I told her I would not accept her apology, since I knew it was just an excuse to never talk about the argument again, I was proud to tell my mother I had not been rude. She told me I had been rude. I was absolutely flummoxed. I insisted could
not possibly be rude, since I hadn't actually said anything insulting, and what I had said, was true. She said, "Just because something is true, doesn't mean it's okay to say." To put this in perspective, I was not five years old at the time. I was 27. Further, apart from while I am having a panic attack, I never say anything I don't absolutely mean, and from what I have learned from friends, and from reading, that is fairly normal. Also, you should know, that some people who are not neurotypical can still be assholes. We are people. Each one is different. It's okay to dislike someone, even if they have a disability. It is not okay to dislike someone because of their disability, but is also not okay to like them for it.

Does anyone else get really annoyed at the fact that people think you don't mean what you say? Is anyone else getting a bit sick of the cliche "guy who says random rude things" under the excuse of Aspergers, in the media?

More later!

Monday, August 6, 2012

Stephen Fry Probably Doesn't Think I'm A Freak (But A Lot Of Other People Do)

Warning 1: This is not technically a rage post. But I got a bit angry, so there's some swears.
 Warning 2: I squee a bit over Stephen Fry in this, but then I also said some not nice things about people that I admire quite a bit. I was as kind as I could be, but I don't want to hear any whining about it in comments.
Warning 3: Trigger warning for short, frank discussions of non-physical sexual harassment and some sexual coercion. Again, I kept it short and sweet and with a minimal amount of detail, but if it's the kind of thing that will upset you, please proceed with caution.

Okay, so recently I learned, along with everyone else, that Stephen Fry is in a happy celibate relationship. And then I whooped really loudly and ran around the house going, "ONE OF US! ONE OF US! ONE OF US!"

I wish I was making that up. Seriously.

Truthfully, I have loved and respected Stephen Fry for a long time, and this just brings the Ace Spectrum that much higher up on the "Things that are awesome" list of the universe. And I know a lot of people are like, "He said CELIBATE, not ASEXUAL." And I know for those of us in the community, that is a serious distinction, because it implies that Stephen Fry could change his mind, and we are not going to. But I'm counting it, because, at least according to the article, he's fairly sure he's not going to either. Also, I don't think that distinction matters so much anymore. Like, when I first realized this was a THING, I thought asexuality was a group of people who did not want sex or relationships, because that's what I was. Then there were people who did not want sex but did want relationships, and I felt a bit like the freak, again. Then there were people who did not want sex, but then did actually meet one person they were attracted to, and did that still count? Then there were people who felt attraction, but not at a physical level, and what did that mean? Then there were people who had considered themselves sexuals, but due to some sexual trauma, did not feel sexually interested anymore. And every time, there was this debate about who is a real asexual? And every time, the community came back with arms wide open going; a real asexual is someone like us. Stay as long as you need. Take some cake for the road. So, while Stephen Fry does not identify as an asexual, and I do not know if, when he said, celibate he meant something closer to asexual, what I do know is that he likely does not think I am a freak for what I do (not) do in private. Which makes me feel good, solid, more rooted to the world, and a tiny bit more awesome because, lets be honest, Stephen Fry is awesome. Which is something I appreciate, because, as it turns out, most of the other people I admire do in fact think I'm pretty weird. And, again, for the sake of honesty, can I just say, it's really starting to piss me off.

David Tennant gave an interview where he said "I don't think the Doctor is neccessarily asexual, just a bit, you know, sexually unaware." Hmm, David? The Doctor is a 900 year old supergenius who spends most of his time in the company of women who are obviously in love with him. I think he's fully aware of what sex is, at least as far as any outsider could be.

Stephen Moffatt made a joke about what hard-core Dr. Who fans believe would and would not happen in the French Revolution, which is ostensibly about historical accuracy, but is actually a thinly-veilled comment about the then well-accepted fact that the Doctor is asexual, on an episode of Doctor Who Confidential - For the record, I loved "The Girl In The Fireplace." What I hated was that since that episode the TARDIS has had an invisible, "You must be able to provide THIS much sexual tension to ride this ride" sign on the outside the door.)

Stephen Moffatt again when he admitted that though the Sherlock Holmes stories are pretty clear on the fact that he is not interested, there is no real proof that he is asexual, and he would not write it that way when he didn't want to, because it would be boring. right, because another last-minute love story has never been done before, and will be a complete surprise.

Benedict Cumberbatch gave an interview where he said that it's really cool when his fans send him like, riding crops and stuff, because it means they're huge fans, but when fans approach him and say "Thank you for making asexuality look cool." it's weird, because he doesn't think Sherlock is asexual just... busy. Ben? When someone thanks you for not making them feel like a freak, it is not nice to turn to your friends and go "what a weirdo." while they're in earshot. We may be one percent of the population, but we're a big chunk of Sherlock's fanbase. There are plenty other roles that are not asexual icons, if that would make you more comfortable. Trust me, I know.

Then of course, there was that episode of House. I swear, I loved that show before the whole thing became about who was getting laid by whom. Now I'm just glad it's over.

And what is annoying about all this is that the absolute ignorance, which we have been dealing with all this time, has given way to something darker, meaner, and with teeth. Because we are not being ignored anymore, because we can't be. So instead, we're being mocked. And all the discrimination that people will tell us we don't experience is starting to come out in full force. So before it gets really ugly, while we're still pretending it's coming from a place of misunderstanding, not a place of hatred, I  just wanted to ask one thing.

What EXACTLY do sexuals think "real" asexuality is?

I am genuinely curious, and for all the inappropriate questions I have answered about my sexuality, I think I deserve a few answers myself, so please, comment. Because I cannot speak for other asexuals, but I took on this label, when I did, because I didn't have one, and everybody else thought I should. Because when I told people, "I just don't get how this is so important." I was told that one day I would grow up for real, and I would become sexually aware, and then I would understand. When I said, "I've just got better things to do." I was told it's okay to be a lesbian, this is the 21st century. When I said that I was too busy to even think about it, I was told that I really should make it a priority, or else people would think I was weird. Every time I told people there is nothing wrong with me, I'm just not interested, I was told that normal, healthy straight people did not feel that way. My sexuality was the source of family concern, and the gossip of my friends and peers. Inquiries were made, genuine inquiries, on whether I had ever been sexually assaulted, or when I thought I might grow out of this, was it because of the brain damage, or did I at least masturbate? (I really fucking hate that question. Sexuals actually ask that question expecting an honest answer. I meet my friends boyfriends. They try to get me to go on a double date with their friends. My friend says, "no, she doesn't do that." and when we explain what that means and why, without fail, eight times out of ten, "do you at least get off?") When I repeatedly expressed disinterest, or when I go so far as to say the whole process was made too much of, and was faintly disgusting, I was sexually harrassed. And I'm not even talking about the times when people would snicker and go, "Pfft, you just haven't had me yet." I'm talking about the times I'd be having what I thought was a heart-to-heart with a friend, and he would smile sweetly, put a hand on my shoulder, and say, "Why don't we just try something, and you can tell me if you like it?" The times I would be asked, by female friends, to at least give a guy a chance, any other girl would be happy for the attention. (See, Benedict. I sympathise. I don't like it when I'm mistaken for one of you either.) Or one memorable occasion, with a guy who swore he was over his crush on me, he invited me on a trip with himself and his family, and when we were short of beds, they suggested I just get in with him, we're all adults here. Apparently, he'd told them we were seeing each other because it was "just easier to explain."

In short, we have this label because you, sexual people, made it perfectly clear we are not like you. We have this label because in a world so sex-obsessed, we needed a line of defense, because it wasn't so long ago that too busy, not feeling like a sexual being, not interested, don't want to wasn't fucking good enough to call yourself straight (or gay, or, for that matter, a fully functioning adult). So now we have this, and its ours, and you don't get to pretend that it's not just because you've suddenly realized it's not that you really didn't think it was possible, it's that you really don't want to have to think about it. It's like if you're homophobic and your best friend is gay and in order to get comfortable with it, you tell people, "No, it's not like he's gay, it's just that he thinks dudes give the best head." Or when you say to a friend who comes out to you, "Are you sure you're not just bi?" (And how much I hate that bi has become quasi-mainstream,  as long as it reinforces the idea that you really can choose to be attracted to whoever. I'm all for fluid sexuality, but this myth that 'everyone is a little bi' is damaging, firstly to actual bisexual people, whose sexuality is often discredited based on that, but also by those people who identify as bi because they are uncertain about an accurate description, or are afraid of how they will be treated. And also, quite frankly, to people like me. Best case scenario is they use that definition, like we sometimes do, to offer some kind of explanation when required, worst is they get to use it to beat their 'open-mindedness' over the heads of other people, whose sexuality is not as fluid. Sorry to burst the bubble, but there is just nothing on the planet that applies to everyone.)

My point is I don't get bogged down in the actual label because it feels like siding with the same people who want to tell me how we're so rare we can't even be measured. And any time there's anyone who says, in any capacity, "This is a real thing." I get really freaking excited. Because the level of denial is getting ridiculous. I don't know what I personally did to deserve the treatment I got, because it certainly wasn't that I was so irresistable everyone wanted to sleep with me. Not only that, despite our best efforts, we as a society can still be astonishingly puritanical. Sex is interesting, because it still holds a note of taboo. So with that in mind, I don't understand why asexuality is such a damn threat. But for every sexual asshole who ever said these words to me, allow me to give them back:

I don't think you really understand what you're saying, and I really hope you grow up soon, for your own sake.
To the rest of us tho:

GUYS! WE GOT STEPHEN FRY!!!!! If that bit about Alan Rickman is true, I think it`s fairly safe to implement that world takeover we`ve all been talking about in secret. Who wants to start?

*cackles evilly*

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.

Saturday, January 7, 2012

It's New Years. I Make Lists.

I love New Years. In fact, as I get older, I think I love New Years almost more than Christmas. I love optimism. I am an incurable optimist, and I always think something great is coming. Like, you know, some people look at the world and see that the glass is half empty. Others see the glass is half full. I’m one of those people who look at the glass and goes, “Okay, everybody get ready, because this thing is about to fill up, and I don’t want to miss it.” Sometimes, this is a good thing. Sometimes, not so much. But usually, even when it does nothing else, it reminds me that I am okay, even when nothing else is.

Example: This year, I began my first year of University after a five-year absence where something happened and it took a long time for me to recover from it. But I felt like I was ready, and more importantly, I felt like I was tired of being an uneducated smart person. Unfortunately, I failed to take into account that A) the last time I was in post-secondary education, it was college, and B) Distance education is complicated. At least three times this year, I wanted to quit. I loved it for the first three months, and after that, I felt like I hated everything about it.

I’m still in school. Presently, I don’t know if I should be. But I am, because it was something that was taken from me, and that is unfair. Also because people make a big deal about my being smart, when really, they’re just amazed I can hold a normal conversation, and dammit, if that many people are going to call me smart, I am going to make sure they’re doing it on MY terms. It is a new year, and I will continue doing all the things I did this year: I will work hard to write every day, and I will read every day. Those are the most important things. But there are a few other things which fell by the wayside, and I’d like to change that. So here goes:

1.    I will post more often, because writing every day is no fun when no one’s reading it.
2.    I will keep my house clean and stop eating like a student. Not only have I gained a lot of weight, thanks to the constant stress eating and being too lazy to cook food, which, by the way, has NEVER happened to me, but I’ve been sicker this year than ever before, and this is coming from someone who is never altogether healthy.
3.    I have always taken pride in the fact that I enjoy food without being overindulgent, and I’ve always been good about money in the same way. I have no problem spending money on things just because I want them (see: multiple trips to England), but I don’t need to leave the house with money in my pocket in case there is something I want. Stress, however, has the unique and horrible side effect of massively lowering my impulse control. I’ve been through some rough roads with depression before, but this is just ongoing stress and struggle. So I buy things I don’t need or want, hoping they will cheer me up. They don’t. I must stop doing that.

Basically, I just want to get back to Ally before Ally was a student again, and still be Ally The Student, because another thing about distance education? You think it’s going to take you next to no time, because you can customize it. But it is complicated and often takes more time than regular schooling, and I cannot live like this for four or five years.

I am taking up the Goodreads challenge again, because it was a lot of fun last year, and helped me to read more. I am also writing more, and in fact, I have a little announcement, more on that later. But another thing I have been doing while being stressed is I have been noticing that the crazy goes a bit deeper than I realized, which, of course, is to be expected and is still a surprise. But. To combat the crazy and the self-loathing that goes with it, I promise every day to do something I am proud of. This year, in fact, right now, I am doing something I always wanted to do and becoming a child sponsor. I chose the Because I Am A Girl program with Plan Canada for 3 reasons:
1.    I’m a feminist, duh.
2.    It’s not an organization which promotes religion as the answer to feeding starving children, so there’s no conversion going on here. That’s important for many reasons, firstly, I don’t think a person should have to give up the faith they may have acquired to pull them through the hardships, in order for it to, uh, not be so hard. Secondly, I’m not Christian, so I don’t like the idea of my money going to spread ideas I don’t believe myself.
3.    I like that I can direct my funding to the countries and communities with issues that matter to me. I am currently sponsoring a little girl in the Togolese Republic, where the foundation works to provide infant and mother care, education for young girls, and bringing women’s political issues to the forefront. I was a preemie baby who struggled to attend regular schooling and now, occasionally, writes about social justice. It’s a no-brainer, really.

There are of course, other reasons, but those are the main reasons. So today, I will be doing that. Dunno what will make me proud tomorrow. Maybe I’ll perfect my ham sandwich or something. (Trust me, if you’ve seen me in the kitchen, you would understand the achievement.)

Now, I must head off. I have to read Joseph Conrad for an English class, and something on sexuality for my Health class.

Oh, while we’re on the subject, can we talk about sexual education? Firstly, I don’t know how it is for anyone else, but our sexual education classes in high school always went with our phys ed classes. So for those of us who didn’t take phys ed, we missed out on all that. Talk about desexualizing the disabled.

Seriously, someone talk about that, because I’m ace, and I can’t.

Also, an asexual taking sex ed must be the world’s most annoying student. I actually considered briefly writing an email to my instructor explaining that I was having a hard time with a textbook that described lack of interest in sex among females as a serious health problem, similar to impotency in males. I am not stupid, and I understand that some people with a lack of a sex drive have serious health issues, but THESE ARE NOT THE SAME THING!

I have not written the email. What do you think?