Saturday, April 10, 2010

Those are These, and These are... Me.

Rage Disclaimer: Come on, you know the drill. I rage, I swear.
Disclaimer 2: Post contains some seriously bad language, but I used it in context. I apologize to anyone who might be offended.

I am about to rage. And this time, I don't want to rage. Because I am about to rage about people I love. And there are people I love who read this blog and will go all, "omg, is she about to rage at me?" And yes. Yes, I probably am, and you're just going to have to learn to suck it up and deal with it.

It's a shocker, so I want to give you a minute to wrap your head around it, but um. I am a person with a disability. I know, I know. I don't sit in a wheelchair, I don't drool all over myself, when I talk you can usually understand the stuff I say, and when you talk, you very often make sense to me. I do not, in any way, resemble any of the people with disabilities that you see on TV, in the news, or in really inspiring movies where the end result is we just want to be treated like everybody else. I don't, actually, want to be treated like everybody else, because there are a lot of ways in which I am Other. I don't look 'other' in any way, I can almost pass for normal. So what is so wrong with me, and why do I think so terribly about myself? Well, frankly, it's none of your damn business what is wrong with me, and secondly, as a side note to the amazing news about my disability, having a disability is not a bad thing. It's not a good thing. It's not any kind of thing, it's just a thing that happens sometimes. And it's a thing that happened to me. So please forgive if I do not see it as a compliment when you refuse to see me as the whole person that I am, a whole person who is funny and smart and talented and spiritual and nice, and also, in fact, brain damaged.

It's bad enough when strangers don't seem to get this, or when new people don't seem to get this. There are people in my life, that I work with, that I spend time with on a peripheral basis only, who I have to take this crap from. I get it. I truly understand that it's difficult, for people who see me on the day-to-day and don't know me well, to either see the disability or not see it. Enabled* doesn't have a whole lot of gray area; your body works or it doesn't. Your brain works right, or it doesn't. That means enabled people aren't used to having to see gray areas, the same way heterosexual only goes one way, and some heteros have a real hard time with the *cough* rainbow of LGTBAQI experiences. It sucks, and it should not be my problem, but it is, and I sometimes have to suck it up and deal because, hey, part of being encumbered with a disability is you don't always have the energy to fight for all the stuff that is worth fighting for.

But these are not strangers. These are enabled people, or sometimes, shockingly, other disabled people, who know me, and know me well enough that, if they cared enough to pay attention, could understand, should, after 25 years, 10 years, etc, know what it is they're doing wrong. But they don't. I have a great many theories on why they don't, which I will expound upon in a moment, but right now, I have a couple stories to tell, if you'll just bear with me.

Story #1
So, last weekend was Easter. Holidays with the fam are usually absolutely out of control. Sometimes, in the good ways. Sometimes, in the bad. To give you an idea, I have three biological siblings. We range in age from 29 to 21. My sister C has four beautiful children, and a boyfriend. The oldest of these is Perfect Nephew #1, who is 6. The rest are babies, 3, 2 and 6 months. I also have 4 gorgeous foster siblings. The oldest is 16. The youngest is 6. My mother has a huge german shepard, and I have 2 small dogs. And on holidays, particularly holidays when I work and then have to be driven home for holiday dinner with the fam, we all hang out at my parents' huge property. Sometimes this works, but often, there are arguments. We were raised with strong opinions, and mine tend to run the opposite direction of everyone else's.

So I had brought my dogs over to the house, and, as promised, I kept them outside. Now, Tootles gets a bit nervous around other dogs, so he was peeing all over everything in the yard, including a crumpled up kiddy chair. I laughed, which netted me a 20 minute lecture from older sister (who is, by the way, 3 years older than me) about how I do not show any respect to anyone, and I am selfish and should learn to take better care of my animals. (These are highlights.) This was closely followed by my brothers, who, once they were able to ascertain who was winning the argument, quickly leaped to my sister's aide in besmerching my general character. Which was then immediately followed by my overhearing the word retarded in my brother's conversation.

I have asked them, time and time again, to refrain from using that word, for reasons which would be pretty damn clear to anyone who might read this blog, but outside of The Internets, for some reason, this is less clear. Their attitude is if they're talking about inanimate objects, abstract concepts, hypothetical people, or a group of people, or, generally people who are not me, they are allowed to use that word, and I am not allowed to complain. This is not anything that makes any kind of Earth Logic, so, this time, because I had been up at six in the morning to work, because I don't like people making fun of my dogs, because I am tired of being made to feel like an inconvenience, when compared to my sister, who has four children and therefore, needs attention, or my brother, who still lives at home, and therefore deserves extra attention, and my other brother, who is never around, and therefore never gets attention, because of all those things, I lost it.

"Okay," I said, "let's talk about respect. Let's talk about how I ask you time and time again not to use that word, let's talk about how it feels when, not only do you shamelessly use that word, but you shamelessly use that word in front of me, ten minutes after butting in on some ridiculous lecture about 'respect' as if you can fucking talk about any kind of respect for any human being besides yourself and someone you want something from. Not one of you show me five minutes of respect at any given time." Now, here's where it gets nasty. Because here is where the world stops making sense, and I start being forced to see my big, well-meaning family for the selfish abilist pigs that they are. Because as usual, as I am angry with my brother, my sister feels the need to interject. I kid you not, this is the actual conversation that follows. I wrote it down for posterity.

"Do you, like, see yourself as retarded or something? Because I don't see how that can be so disrespectful to you."

"There are, actually, a lot of people who do see me that way."


"I have brain damage, you moron." (edit:  this is apparently ablist language. Live and learn. I will refrain from using it in future.)

"Okay, but that's not what it means."

At this point, a side note, interestingly, from the brother who made the original offense. You see how the family dynamics work, yes? Whoever is winning gets the backup (there's some patriarchal backstory to that, which I am not getting into here.) "Uh, yeah, it kind of does mean that," brother says, but does not apologize for his earlier offense. C becomes flustered.

"Okay, but we don't see you that way."

"Except for all the times you call me your 'stupid retarded sister.'"

"Okay, but I mean that as an insult, not like, as a real thing."

Okay, please let me take the opportunity to explain to the ignorant out there scratching their heads going, "y'know, she has a point." No. She does not. I would almost believe my sister's ignorance, that she truly is only saying it as an insult except A) my brain is not an insult, thanks very fucking much and B) the only time my sister refers to me as her 'stupid retarded sister' is when I am getting something she is not, or does not feel I deserve. And usually, the cause of my not deserving something is, in fact, my disability.

As in, "How do you think I feel that my stupid retarded sister gets to go to Europe, while I don't get to do anything, and never did anything with my life?"

"How do you think I feel when my stupid retarded sister goes off to college, and I'm like, stuck here in public housing because I have kids?"

"Seriously, don't you think it's odd that you live on disability and you get to have extra money to do things? I have four kids, and we don't have money. I don't think that's fair. You're supposed to only have the bare minimum. Don't you think you're being selfish? How do you think I feel that my stupid retarded sister has more money than me?"

Et cetera. But it is such a comfort that she doesn't actually mean I'm retarded. Just, y'know, that I am less than she is, that I was supposed to be the one lacking, and how bad must her life be, when mine is better? Which is fine, really. Totally acceptable. Sibling rivalry and all.

There is also C) that it is actually a real thing, that it is a real thing which essentially means you have brain damage which effects your mental faculties, cognitively and/or intellectually, and guess what? I actually have brain damage.

The actual conversation then degenerated into what my sister believes 'retarded' really means, which I cannot post here because it made me absolutely sick with rage and disgust, but various qualities were mentioned which many of my friends with disabilities share (drooling was mentioned, and the use of diapers). After she went over all the qualities of why and how I was 'normal' and 'not one of those' and therefore, had no right to be offended, and then talked about how it didn't even count because it wasn't directed at a person and how she's not even allowed to call her son a goofy kid, because apparently that is offensive (edit: apparently, this is a prison slang for pedophile.) and she was tired of it. Yes, folks, my sister was offended by the idea that she was expected to know or learn or even care about how to respect other people. And in her own family too! This, apparently, is what qualifies as a valid point in my family.

After this myriad of excuses, attention was successfully diverted from me and my rage, and I watched in growing horror while they discussed hypothetical Others, and how to treat them fairly while still managing to not change in the least. All the while a real, flesh and blood Other, who is a member of their own family, was sitting right in front of them telling them you're doing it WRONG! But apparently, only the hypothetical Others count, or maybe I don't count as Other, because... huh.

You know, I don't know. I can never figure it out. My family has a long and sickeningly proud history of racism, sexism, homophobia and ablism. They categorically and sometimes gleefully announce how and why they hate everyone who isn't like them, and all the ways they have a right to that, and are treated unfairly for it. And then expect me to believe they don't hate me. That I am the one person in the world that they can acknowledge is different, and make their peace with that. I can't figure it out. I really can't. I suppose this, then, is where the term "special" comes from. The kicker was after, when I replayed the conversation for my mother, who missed most of it, and she told me to stop thinking of myself that way, because I wasn't like that at all. That she was siding with my sister, because I was taking things way out of context.

Story #2
So, I have a lot of friends with disabilities. I went to the summer camps, the seminars, took part in the pen-pal programs, etc, all the 'specially designed for disabled people' programs that were offered. Sometimes, other people with disabilities give me just as many funny looks as enabled people give. It's understandable. I no longer wear braces**, or even glasses. When I speak, as I mentioned, I am pretty understandable. Usually. I stutter over words or drop words in the middle of sentences, and when I get angry, half-formed words tumble out of my mouth (which is the reason I write letters), but generally, I speak perfectly fine. I am independently mobile (no wheelchair, walker, crutches, etc) and cognitively and intellectually, I tend to excel, for the most part. I'm missing most of those things my father calls 'common sense', that is, I have zero short-term memory.  I forget to eat. I lose track of time. I can spend hours carefully mapping out exactly what I'm going to do in a day, then be rendered completely useless for several more hours, unable to work out the logistics of how I will get around to X when I've just been interrupted because Y has come up. I constantly exhaust myself, and have to factor in naps, and then am unable to sleep because I only have so many hours of the day when I will be able to concentrate to get things done. I have zero skills with numbers. I instinctively know that some numbers go together, and how this works in my head, I will never be able to understand or explain to others. But there are days when someone hands me $150 for a $130.90 hotel charge, and I cannot make correct change without checking and double-checking on the calculator. These all count as cognitive and intellectual impairments which may or may not be brought on by the brain damage. But to my family and friends, they are only personality quirks, or in some cases, personality flaws. Because I can't possibly have cognitive or intellectual impairment. Because I'm smart.

Anyway, I can recognize my own ignorance when it comes to the disabled community. I am fortunate where others are not. But occasionally, you run up against assholes in the disabled community, who, much like the assholes in the enabled community, have ideas of who you are, based on what you are. Because you see, people are people! And some people are assholes! In this instance, I had a friend who liked to give The Excuse for virtually every flaw in his personality. He was constantly going through women, desperate for attention, specifically, female attention, because he was in a wheelchair, and therefore could not hope to keep attention, and had to always be on the lookout for the one who would marry him. He could not be expected to go to class, despite the fact that his parents paid for his college education, because it wasn't like he was ever going to get a job, he was in a wheelchair. More importantly, I could not understand his pain, his isolation, because though I too had suffered academically, socially, financially, and professionally because of my disability, I was not in a wheelchair.

The problem with this scenario, as anyone with a less-than-visible disability would be able to tell you, is that I am visibly disabled enough that it is clear that something is wrong, even when it's never quite clear what is wrong. And to a frighteningly large portion of the the enabled community, there are only two disabilities: The ones where you can't walk, or the ones where you are... I want to say developmentally disabled or intellectually impaired like I've been taught to say, but let's be honest. They don't think of it like that. They think retarded. And every person who's ever used that word to not mean that, they know it. Because everybody who uses that word to mean stupid understands why it's a worse word to use than stupid, like when you say 'fuck' and you really mean 'sex' but you want to emphasize something - some bad inherent in the word prompts you to say it that way.

Anyway, that's not the story. The story is that I knew this guy who was a complete asshole and blamed his disability on things that were really his own totally shitty opinion of himself, and the fault of the shitty people who gave him that opinion of himself, or, his own fault, because at this point, he was in his early twenties, and the fact that he wasn't doing anything to work through these demons of his was kind of nobody else's responsibility. And eventually, I got tired of the constant complaints about how this friend and that friend was supposed to understand, because zie was also in a wheelchair, and I had to explain, "Maybe, uh, that's not the problem?" Only to be told how I did not understand because I could stand on my own two feet. So, eventually, we parted ways, because I do not like negativity.

One day, I was talking to a mutual friend of ours, who is enabled. We were both on the job hunt. My situation was compounded by the fact that there are only a few places that will hire a college drop-out (Long, messy, poor-me story. Don't ask.) and most of them are not disability-friendly. So when I bemoaned the fact that it is incredibly difficult to find a job in this situation, she said, simply, "I told you job-hunting wasn't easy. You were always on me about finding a job, now you see how hard it is." At which point, I reminded her that I was not always on her to find a job, that I was always on her about complaining that she had no job. And I also mentioned that it might be slightly easier for her to find a job than it was for me, owing both to the fact that she lived in a bigger city, and that she could conceivably apply anywhere she chose to, and chose not to apply to lots of places she had deemed as not something she wanted to do even temporarily. I, of course, was much shorter of options, and in addition, was expected to let someone find me a job, and then be grateful they had. (Seriously, do not get me started on that whole job support program. Why the fuck do we need a committee for every decision we make?) She hears this, gives a long-suffering sigh, and says, "You know, you sound a lot like *asshole* today." My bad. I forgot. Asking to be acknowledged as the person you are whose experience is different from someone else is the exact same thing as asking for constant pity and sad-eyes. Because the person who I am, and my experiences, are just that pitiful, the two things are utterly interchangeable.

It is hurtful, when a portion of who you are is deemed acceptably and universally bad by the rest of the world. And of course, when you say it like that, everybody knows that's hurtful. When you say it like that, it sounds like racism, sexism, homophobia, everything most of us acknowledge as wrong, even if only to be PC. But then. Everybody knows disabled means bad, right? It means not able. Oh, the conundrum. How difficult for the enabled community, who are expected to navigate a world they are not part of and actually listen and rely on the experiences of others to explain this world to them.

This is why I still use the term 'handicapped' when referring to myself. It has an adorably ironic sport connotation, (Ironic for me, I mean. I know lots of athletic people with disabilities, and they pretty much all kick ass. I, however, lack any athletic ability whatsoever.) and what it means is that I need something extra to do what other people do, to the same extent and ability. Which I do, unashamedly. And sometimes that is built in, somewhere in me, and sometimes, it has to come from the outside. Sometimes, it has to come from you, enabled people, and that means doing what we ask of you, not doing what you think is best and then asking us to be grateful for it, lest, as the great and generous force behind virtually every positive moment in our lives, you decide not to grant it next time.

A note to the enabled people who know me: I am a person with a disability. And I am happy this way, truly. Would I be happier if I lived in a way that my body was a reflection of my personal self? I don't know. I was never given that option. I don't believe, if I were given one wish, I would waste it on something as foolish as this body of mine, which, admittedly I have no great love for. But I will admit if there was a pill that could make this go away, I would probably take it. The fact that there isn't, though, has no real bearing on my life. Does the fact that I am relatively mildly disabled contribute to my happiness? Well, not as such, though it certainly contributes to my good fortune and the opportunities I am afforded. I do not know how I would feel if I were in a wheelchair, or if I were non-verbal, or if my cognitive or intellectual abilities were less capable, or even appeared less capable, than what they are now, because I can acknowledge that I don't know how people would treat me, and some people treat me pretty lousy now. I do, however, know a lot of people who could fit in either or all of those categories. Some are happy, others are not. Some care about disability rights, some only care about themselves. But I am a disabled person, and I am also a happy and optimistic person, and I have friends who are enabled, and friends who are disabled,  and it hurts me, when I see ablism, and it hurts me when people go out of their way to exclude me from 'those people.' Because sometimes I don't fit with you. And, shocker, I am a lot more comfortable with that idea than most of you seem to be.

I am one of Those People. I have friends who are Those People. That World, that you seem so quick to reassure me I am not part of? The world where every statement begins with a negative prefix, a non, dis, lacking-in, etc? That world of people who need things done for them, of people who take too long to do anything on their own, and get in everybody's way, and can't help but be inept, no one's blaming them, but god, do we have to humor them? I am part of that world. When you talk about Those People, you are talking about me. Or, you are talking about people very close to me. It's you that has a problem with that, not me. I am one of Those People who take this stuff personally because it affects the way people treat me, personally. Because if I don't speak, one of my friends and family will be able, in all honesty, to use those words, and carry around those stereotypes, because you have me, who appears to be okay with it. And because if I do speak, I am one of Those People, who only ever sees herself as Disabled, and who needs to get over that, because she has so much else going for her, if only she could ignore that part, and really, it's not as if it's that hard. Yes, I make this personal. This is the identity I have been given by the enabled, over and over again. This is how many people describe me to other people. I am the friend/sister/daughter who has Cerebral Palsy. I am the friend/sister/daughter who has a disability but is omg so smart though, you'd never know it. This is how, when I say that I am different, people think of different. This is that thing people hurry to tell me is totally unnoticeable. Regardless of how full of crap they are, or what I am actually talking about when I say I am different. That you oh-so-benevolently take it away once you have reassured yourself there is a real person in there, or whenever you need me to feel cut off from Those People, or reassure me that I am One Of You, as long as I keep my mouth shut about it and act grateful when the time comes? That is a blessing I can do without, thanks. You have given me this as an identity, you can learn to live with the consequences. Goddess knows I have to.

Please stop telling me who I am. Please stop telling me what I should be focusing on, what parts of me are worth your acknowledgment, and subsequently, which parts it's okay to pretend don't exist. Having me as a friend or family member is not a free pass to tell people how you're totes all about disability rights, obviously. Using that word is not about your accidental slip of the tongue, how you were raised, or your inability to come up with a more intelligent and accurate response. It is about your laziness. It is about your laziness not only to learn to watch your fucking mouth and show some respect, for Goddess' sake, but also, your casual disregard for me.

I wrote, in a recent blog post, about a friend of mine who is being less than supportive about this whole deal. I assume said friend knows who zie is. But really, it goes for all of you, all of you who use that word once you understand, not only what it means, but what it means to me. I am not, by nature, a social person, though I'm very friendly. I regret to say I have lost track of people, or closeness with people due to mutual disinterest, or my own genuine cluelessness. You make the choice to be in my life. This is a part of that. My body, my brain, and who I am, sometimes in spite of, sometimes because of, but always in addition to, all of that. What you are doing, when you use that word, is reminding me where we stand. How you stand on one side and I stand on the other. How it's still your world, and, though you love me and care about me and are interested in me as a person, you have no desire to venture into mine, and I have no right to expect you to. I am on my own, and I cannot expect you to 'deal' with this, because who in their right mind would, voluntarily? Which would be fine, except that I still have to live in yours. I don't have the option to opt out like you do. And the sick thing is, as much as you claim that it doesn't mean what I keep telling you it means, I'm pretty sure that there are a few of you out there who don't want to venture into my world, because, like my sister, you're not comfortable with the idea there may be some places we may need to lead you. Because that's just not how it goes, is it?

If I talk about this stuff and I'm being too sensitive because it's based on my own experience, and the people who 'love me' don't talk about it, because it's not that big a deal and I'm being too sensitive, and the people who don't know any better can't talk about it, because they don't have the experiences, when is it okay to talk about? Oh. Right. That's the point. Sorry, sometimes I miss that. You know how it is.

*Enabled - Ally's word for people who do not have disabilities. Blogosphere does not like able-bodied, as it left out people with neurological impairments and developmental disabilities, but also, I do not like the term 'temporarily able-bodied' for some reason I have yet to identify. Possibly because it's clunky. Enabled is my replacement, as I feel it encapsulates most of the problems within the community of people with disabilities, which are caused by, not the disabilities themselves, but the fact that society is built for bodies to work a certain way, and you get all kinds of nice things given to you and ascribed to you if yours does, while we have to content ourselves with whatever version of 'nice' you decide we are capable of comprehending, and often receive a cookie for your efforts.

** braces such as the ones I wore, for those of you who don't know, go on your legs, not your teeth. I wore several incarnations off and on from toddlerhood til I was about 13. It actually did take them ten years and one trial and error serial casting episode before they realized that it didn't really work for me. There was a lot of trial and error episodes in those days.

AN: If you have a squicky feeling of guilt in your stomach, wondering if this post is about you, then it probably is. If you're just really pissed at me right now for getting mad at this? That's okay, I'm probably pissed at you too.



  2. thanks for that. i actually looked that word up myself, but didn't find anything. Nor did my beta who knows such things. I'll edit.

  3. Wow, this was an amazing rant. (Got here via FWD).

  4. Also here via FWD.

    Having different disabilities, our experiences are different, but I'm listening!