Archive for the 'jo/e' Category

social anxiety + fibro + ballet … what was i thinking?

Written on October 13, 2009 by jo/e and matt. 0 Comments

i took a ballet class last night for the first time in five and a half years. it was my first ballet class as a boy. it was familiar and beautiful and hard and so right. it might have been a mistake to take beginner/intermediate instead of very beginner, but it didn’t seem like i was so behind the others, or even the worst in the class. none of the material was beyond me – even the “pirouette prep work” that sounded so intimidating, i realized, my body still has some muscle memory about. when i got a glimpse of myself, in black tights and a white undershirt, doing jumps, it was incredibly beautiful. even though my form sucked, i was still beautiful.

i also got an official diagnosis of fibromyalgia last thursday. (that’s still sinking in, even though i knew it was possible or even likely.)

i became so exhausted over the course of this hour-long class that breathing was incredibly painful and both my legs were shaking uncontrollably when i put weight on them with a locked knee. i left early, which i knew to be rude and embarrassed the hell out of me. i should have left earlier. after i left, i made it to the men’s restroom, got some water which hurt to drink, and sat on the toilet (wishing i could collapse on the floor) for five minutes before i could even begin to take my dance clothes off. more rest before getting the street clothes on. luckily the bus stop was very close, but i had a five block walk home from the other end. i limped, though of course insiders accused us of faking. i could walk without a limp, but it hurt.

as i recovered from the exhaustion at home, the pain started to set in. i am still in bad pain, especially from the hips down. and my lower back around my tailbone is hurting so sharply it’s hard to believe i’m not injured. excuse the complaining.

in my head i’m thinking, “god, you’re so worthless. why on earth would you try to do such a physically demanding thing, when you clearly aren’t up for it? you have no business signing up for a ballet class when you have fibro. that’s taking space away from people who are able to dance. that’s not something you have to do.”

but the thing is, how can i wait to start my life? why is it not my business just because it’s physical? and i mean, maybe this is just my head being overly critical (heh, don’t know why i am sidestepping multiplicity so much. i guess it just didn’t feel needed for the point i’m trying to make.) but i got the criticisms from somewhere. i don’t think the attitude is incredibly rare. i certainly know i am scared of trying to talk to the instructor because i feel like i have no business taking the class. she will probably be nice, but you never know.

ballet is something i’ve seriously wanted to get back to since – well, since i quit, but especially since i started planning my transition in 2006-2007. i’d been intending to return as soon as i felt well enough after the surgery – well, that got delayed a year, but shit happens. i feel like it’s been delayed long enough. i feel ready.

so now i have to wade through my social anxiety and figure out what to do about this situation. i could try to change to a more beginning class, but the only open class is too late at night for me on a full day, i’d be even more prone to exhaustion. plus, i think i fit in well as far as technical ability. i’m on the lower end, maybe, but i also will probably improve fairly rapidly at first, because of how much ballet skill i’ve earned in the past.

but there is no way i can do that to myself again. (i say, and was sure of last night, but already today i’m wondering if i can just make it work next time, say by not trying quite as hard so i can make it to the end – but i don’t know how not to give it my all!) so i need to do something.

i don’t know what, i don’t know how. i’ve thought of talking to the instructor before class and asking if i can stop early on a regular basis, but it was very scary just getting to the class in the first place. i hate to draw attention to myself. i’m already the only boy. (and my head stupidly thinks it is even less acceptable for a boy to – i don’t know – take care of himself, have fibro, be weak… problematic stuff of course, but it still is there making my fear bigger.) i don’t want to drop out of the class; plus, i’ve already paid for the quarter.

i need help, and it’s not unreasonable that i get enough to be able to do something that has been a major part of my life goal/vision since i was about 11 or 12 – dancing. dancing ballet.

i’ll be all right. i’ll figure it out. but it’s discouraging to have this barrier. i’m sure it will probably be okay for me to leave early. but it is still scary.

mistakes and language

Written on October 7, 2009 by jo/e. 0 Comments

i have always been ok with the label of “politically correct”. there is a lot of shaming of people who are committed to using non-offensive language, but i still think it’s worthwhile to use language that doesn’t perpetuate the marginalization of marginalized groups.

so why are there some things that i’m having trouble letting go of? i think i’m doing a lot better now, and i think that not living with aeron has a lot to do with that. but i still have to own my choices and i want to think about it here. from the perspective that i have reasons for what i do and just yelling at myself is not going to get me anywhere.

so, i object to “retarded” or “retard” and i am vocal about it now. however, telling aeron that it’s offensive is an uphill battle. he says “give me a word with the exact same connotations and effect and then i’ll stop using it”. i think there’s something to think about there. why do we feel that we have a right to a certain set of associations? isn’t it possible (probable) that those connotations come from a word being offensive? maybe it IS the marginalization in the language that he wants me to provide for him in another word.

i have the same problem. one of the words i haven’t chosen to let go of for a long time, even though i knew it was offensive, was “lame”. i reasoned to myself that language change lets me off the hook (it doesn’t, when people *who are targeted by this word* clearly state that they find it offensive), but i think the real reason i didn’t want to let go of it was for the same reason aeron doesn’t want to let go of “retarded”. i want a word that will have precisely the effect of “lame”. but isn’t that the problem?

i think part of it has to do with claiming a male identity. language is one of the ways we have allowed ourselves to signify our masculinity, and there is a cultural trope that “boys are allowed to be crude/informal”. two other words i started using around the same time i started rationalizing “lame” to myself are “sweet” and “nice”. (as interjections.) i have been craving a space that wasn’t mine, and in taking steps towards that space, maybe i wasn’t acknowledging the reasons for the nature of the space. i mean, don’t get me wrong, i have been very concerned about stepping into male privilege throughout my process; but i think there’s a reluctance to examining the nitty-gritty details of some aspects of that privilege.

there are other ways to legitimize my identity. for example, some things that are new-ish in the body’s language (it gets too complicated for now to talk about who inside uses which things, although that is a valid conversation) are: “nice”, “sweet”, “no worries”, “it’s cool”. i have no problem with any of these terms. “no worries” is one that i notice myself using a lot, even with people i don’t know. it’s often a response to an apology. i really like it.

so having done some more reading, especially on disability rights blogs, i realize that lame is not okay. even “stupid” is not okay, which will be very difficult for me because that’s a lot more ingrained into our language. but trying doesn’t mean not making mistakes. it just means trying, and being all right with others’ reactions to the mistakes. (i think that’s a crucial missing step for many, including me often: just as we are not bad for making mistakes, so are people not bad for having reactions, even angry reactions, to those mistakes. they are not saying we’re a horrible person for making a mistake; they’re saying that they have feelings and would appreciate our continued work in that area. or just, they have feelings. period. and those feels are valid, and they are not indictments. edges has helped us with this a LOT.)

actually, i’d like to write about that (feelings/mistakes) more in detail at some point. but it’s a school morning and i really should stop now.

race and spoons and many many things

Written on September 5, 2009 by cynthia, jo/e and sg. 2 Comments

today was the first day of workshops for gender odyssey. it was very very fun and good and the bigs got a lot out of the workshops. we went to one about trauma and health (though sadly a bit too DBT oriented for us) and with the other two sessions we went to a two-part one about dealing with our own racism – it was very very good.

then, instead of going to the friggin keynote speech, we had to come home, because we were trembling with exhaustion. and pain. but we are still glad we got to go to what we did. probably we realized we won’t be able to participate in this conference beyond the workshops. there is just only so much we can do.

but we are proud of ourselves for coming home.

since then we’ve just kind of been hanging out and being in pain and discomfort. we’re feeling lonely right now which i guess is why we’re writing. it is hard to make room for littles in grownup spaces. but we like the thoughts our head gets filled with.

recently beth and other bigs have been thinking about how we have felt called as a healer for a very long time. claire is embarrassed by language like this but matt is good about it. claire is still around a lot you know, it’s just inside. i think we already do stuff with co-facilitating the support group and stuff. but it’s also cool to think of other ways. like with touch or massage. we are very sharply intuitive actually and beth is even more so than the rest of us. ej thinks we give good massages and they don’t normally let people massage them. heck even our mom told us we have a good touch. (squick)

i’m a little writing about big things but you know what? they wouldn’t have. they never say event stuff like this. it never makes for good writing, at least not for them, because our writing style doesn’t really do well with describing things happening. it is better at speculation and exploration and emotions and stuff.

we really really liked the racism workshop, which was called “beyond shame” and was aimed at white people. the facilitator was absolutely amazing. there was such good discussion, and it was all about making mistakes and acknowledging, let’s face it, that we’ve learned and taken part in racism as part of the background of the messages we’ve gotten our whole lives.

we really loved the discussion and we were talking it over with edges afterwards and thinking how amazing it would be if there were an ongoing group type venue for mentally ill people to talk about oppression. just to engage and dialogue. the reason we go there is that i think being a survivor and being multiple affects how we act in the world so deeply. and we think that we don’t have a right to exist, and it’s not necessarily so easy as it is for others to challenge ourselves. we have to do it carefully and there has to be even more focus on self care. at the same time, we want to think and talk about and work on our part in some really privileged groups. we think of our *main* privilege, though certainly not the only, are being white and being educated. we would say middle class except we’re NOT, we’re mixed class. we grew up super poor, though we did always have food (not necessarily varied food, or the food we would most want, but there was always food) (except when we got locked in a closet! but that’s a whole separate thing!) but despite being poor, we had a lot of cultural and educational privilege. some of that is being white and is heavily affected by being white, particularly the cultural aspect, but it was also “class” based. if by class you mean education, having our version of english thought of as standard or better, and stuff like that.

would you believe i’m still little? well, 12 is little right? more or less.

ANYway, so we were just thinking about how much there could be to talk about on a regular basis. we read a lot of blogs online about this stuff but we don’t so much talk about it in real life except with a few close friends. sometimes we are frustrated that we can’t bring a challenging outlook to group – it just doesn’t work for a support group for people that are so broken down already. the focus needs to be on support, not challenge. whatever! we’re saying things wrong and making mistakes. but that’s the whole process.

part of why we wanted that too was like the facilitator was encouraging step up/step back which is like if you have been talking a lot, maybe let other people speak up, and if you haven’t been talking, speak up. and when we went around the room saying something we were afraid would happen when we made a mistake and acted racist, he said “remember, we’re taking risks.” which, absolutely, but i just think our risk level is totally different for different amounts. we gave that workshop our all and we still were one of the quiet ones. it would be so amazing to have a space where we could talk about that with that frame. compassion and self care. gentle acknowledgement and work on how to be more respectful next time. recognition of the limited number of spoons we all have. for example, we have social anxiety, right? so we’re not able to interact with people very much in the world. but the way we avoid also happens to be something that POC and visibly disabled people have to deal with all. the. time. i really hate to add to that. so we will push and push on ourselves to be friendly and normal with especially those two groups, because we just don’t want to be another person who seems scared of getting cooties. but if i do that too much, i think i’m probably taking away from my ability to be an ally and work on my racism in the long run. i think like instinctively you can always get further and like be more effective with self care. at the same time, people are going to have feelings if we avoid them, and those feelings are totally valid. and acting more actively scared of people is this to an even bigger degree – and almost always we’re not scared of the people, we’re just scared. period. and that shows in our body language and stuff. and it might hurt because it is just one more thing on top of the mountain.

we went on longer than we meant to! we weren’t able to write without cynthia or other kids being like out and using the language because the kids can be braver and we don’t care about good writing and stuff, but we were definitely talking to the bigs and they were feeding us some of the stuff to say (but we don’t mind) especially jo/e.

we MEANT to write mainly about how now we’re overwhelmed and little and scared because it has been such a long day and even good things can be stressful and we feel like we are in some kind of little bubble or cocoon and we’re going to be alone forever and no one is ever going to care and it is just, it feels like our vocal cords wouldn’t work if we tried to use them because the silence is so much bigger and heavier than we are. like a big blanket around everything. alone. let down. we are ok and have a fairly hopeful attitude, but we also have a lot of sad and scared and hurt emotions.

and it’s not fair that we don’t get to do as much stuff as other people! and it’s not fair that our body hurts it hurts so bad! and it’s not fair that this is a result of people being reckless with our body years and years ago – outside people i mean. we’re like disposable or whatever. and so 20 years later we have to deal with how it fucking HURTS because you just can’t DO that to a body without consequences. and it’s not fair that we have so much social anxiety. and we want to cry but we can’t. and we don’t even know if we want someone to be here or not. maybe there’s nothing we want, except we are so restless and it is so hard to have such a bad headache so it’s not easy to do ANYthing so like… we are bored.

ok that’s all! did we talk enough for you?

social anxiety and the disability rights movement

Written on August 2, 2009 by jo/e. 0 Comments

more than anything else, my social anxiety sets me apart. more than anything else it blocks me. it is so insidious because it affects access at every level – it affects access to accessible spaces. it means even though i have accommodations for school, i am usually scared to use them. i am scared to leave the apartment. i am scared to use social networks. i am so careful of ever bothering anybody that i write myself out of my life. i feel like i live in a box with no in, no out.

it makes me overly dependent on the few safe people. it blocks participatory access to basically everything. it seems like a cruel joke that i’m so crazy about languages, because i can never overcome the anxiety enough to become fluent in another language.

it’s easy to hate and rage against the anxiety. and given that my treatment has been in the frame of the medical model (even defining it as “treatment” speaks to that), i think to some extent that’s been supported. agreeing on the enemy, if not the way to handle it.

i’m really interested in how things like social anxiety and what we call “nonfunctionality” for lack of a better word fit into the disability rights movement. i have gained so much more hope from the movement and the social model of disability. it actually really helps to think that i will probably never be “normal”, that i’ll always experience access limitations because of it. the social model (for a poor quick paraphrase) says that the disability lies in society’s failure to treat everyone equally, to provide equal access to public and private spheres. i love what a powerful example of reframing that is for me. i feel fired up when i see my “weakness” in a political light. it allows me anger, something that has always been in short supply. it helps me to feel connected. (for example, i always want to smile in some vague collegiality when i see someone in a wheelchair now, whereas before so much reading my concern was always to make sure i wasn’t in the way or being offensive.)

i want to know how i can participate and advocate for myself when i have a panic attack every time i am noticed. i want to know how i can contribute to the movement when i do not have consistency or many spoons. the thing i hate about my social anxiety is that i don’t have any kind of decreased need for social connection. i just find the connection to generally be painful. so when i read these blogs and look at other things online relating to the disability rights movement, i have a longing to somehow enter into that sphere. i have become increasingly attentive as a passive participant – but there’s something, too, about dialogue. edges and indigo are really good for talking about issues with, but we’re just three people, none of whom has much energy ever. it’s different from communicating with bloggers by commenting or something. but i get a panic attack every time i comment anywhere – i think i’ve done it twice, and once sent a few tweets to a blogger i admire. each time has cost me incredible amounts of energy.

is it fundamentally contradictory to think about accessibility when the disability involves the need to be invisible? i don’t think it should be. i long for community, but it does feel out of reach for me. one of the problems is that i’m not ever going to be able to be consistent. i can’t build up a blog that people will come to and engage with because i can’t write about social issues very often. so much of the time, i can only write about the pain i’m in that day. so much of the time, i can’t write at all.

i can’t build up a persona, because i have been able to say something three or four times in a year. when it’s that rare, each interaction is taken individually and will never be connected to anything else, or remembered. and when each interaction is taken individually, the energy cost remains very very high. if i had some kind of continuity i could know that x blog tends to be receptive to me or that i would even have some tiny amount of credibility there, even when i have brain fog or anxiety that shuts down cognitive functioning.

i want community even more now that it looks like i might have physical issues too. i have severe chronic debilitating headaches and it looks as though i fit so many symptoms of fibromyalgia. (not saying those two are necessarily unrelated, but i tend to split body pain/head pain in myself. like somehow head pain is easier to concede, but less significant; body pain might mean something, but is more debatable.) more and more i turn to a world aligned with “disability” because it just gets more relevant each year.

i don’t know what accessibility would look like for me. i know or feel that i don’t have it, in some of the ways i mentioned. but it feels impossible, maybe oxymoronic, to think of finding a way to participate in community while remaining invisible enough to not trigger my anxiety. i do not see a way to get over feeling inferior (my words would waste everyone’s time), or to work with it.

flexibility

Written on May 1, 2009 by jo/e. 23 Comments

this is a post for Blogging Against Disablism Day. this is my first year doing it and i’m excited and nervous. please do follow the link; there were such amazing things to read last year, and i’m sure this year will be equally rewarding.

why is the accommodation of flexibility so hard for people to provide? does it have to do with the fact that it would benefit everyone? i can think of so many scenarios in which i just need a little flexibility in order to be a part of things.

i’m not in school this quarter, because financial aid does not care why you need to be part-time; it won’t pay a dime if you want to go less than half-time. my graduate program is hard, invigorating, wonderful, but it requires so much out of me that i consistently struggle when taking two classes. i want to give the program the attention it deserves. i want to do my best. hell, i’m doing this whole thing in the hopes of getting off of disability income – i’m doing computational linguistics, not theoretical linguistics. i’m being practical. but i can’t go to school, because i cannot pay for it myself, and i can’t seem to do well in two classes at once. not without borrowing heavily from the future. i don’t know yet how i’m going to manage in the fall. just hope that my time off recharged me enough so that i have reserves to spend again. and start the whole cycle over.

and anyway, what if i couldn’t do even one class? i’m motivated, smart, suited to what i’m studying, but sometimes life crashes in and i spend the week in pain and fear, with not even enough good time and energy to keep myself fed. i am so jealous of everyone else in my program, who can spend 80 hours on a homework. who can work and go to school. who can flake off sometimes, counting on being able to make up for it later. i have to push so hard to make sure i’m doing work whenever i possibly can, because i never know when i’ll get thrown back into the abyss. why couldn’t i do the work in my own time? these classes are made entirely of homeworks, for the most part. why couldn’t they record the lectures, have me watch at my own pace, do work at my own pace? so many restrictions seem needless to me. accommodations in education have the delightful caveat that if anything is too hard or too different – too accommodating - they don’t have to worry about it.

stress makes my disability worse, which unfortunately tends to work out to mean that the more i need to do something, the less i can. the more important a homework is, the harder it is, the closer to the deadline i am, the harder it is to buckle down and focus. i have to fight through worse and worse panic attacks. i work so hard at just doing it, not caring, not worrying what it will make anyone think of me. but i can’t. sometimes it’s hard to type a single line of code, because i’m afraid the grader will be judging me, laughing at me, looking down on me. when i get a 94 out of 100 i have this barely controllable impulse to run to the teacher or grader and apologize profusely. it’s my job to learn the material; to turn in something that is not right, that i know is not right, feels just awful. it feels like i’m throwing away any chances to be liked or respected.

sometimes i want to scream when i encounter the subtle stigma that hangs around me. i already have terrible social anxiety, so interacting with classmates is exhausting and requires lots of recovery time. but it’s worse to stand out, so i make the effort to interact pleasantly and normally. i always show up early, so i end up having to try to make conversation with the others that arrive early. the first conversation always goes the same: they ask me what else i’m taking, i say that i’m just going part time. they say, “oh, are you working somewhere?” because that’s the story for i think every other part-time student in this program. they have fancy jobs at microsoft or another cushy place; often, their work pays for them to get the degree. (i don’t even want to think about how much debt i’m going into for this. all without the guarantee that i’ll be able to work afterwards – yes, this degree “pays for itself”, but you do have to be able to work for that to happen.) if i say “no” they ask what i do with my time. if i say i’m disabled, they ask me what’s wrong with me. the second that i mention that it’s psychiatric, that’s the second their eyes shut off and glaze over. they retreat from interest and friendliness into politeness.

and when we have to do projects together, i know i’m frustrating to work with. i know they think i’m being lazy when i don’t finish my part quickly. but i swear i spend far more hours than they do, psyching myself up, fighting with bugs for hours when i can concentrate because it triggers my anxiety so very badly to ask for any kind of help. they dash off a quick email to me, letting me know where they are, even asking questions, and it takes them under ten minutes. i spend an hour agonizing over a 10-line email, and i have aeron or edges read  it because i worry so much about sounding perfectly normal and appropriate. sometimes i can’t hit “send” and have to have someone else do it for me. then i panic, knowing i can’t take it back, worrying about how they’ll take it. if i can experience any relief at having sent the email, then they reply a day later and the cycle starts all over again. and that’s not even talking about all the time it takes to code, all the hours when concentration completely eludes me.

i don’t mind hard work, but i hate that everyone thinks i have it easy when i’m putting every waking breath into either doing the work, or charging up to do the work. i end up having no time or energy for housework or eating, because those things are already hard for me. and when self care falls by the wayside, then of course it makes it even harder to concentrate and do the work, which makes me struggle with it all the more, leaving even more self care by the wayside. i am so humiliated and frustrated at how hard this is for me. i feel like a failure for this empty spring and summer. eventually, i need to do an internship or a thesis project. i can hardly even handle ordinary classes; how am i going to actually finish?

and when i do, it’s just going to get worse, because i have to try to enter the workforce. getting a part-time job as a programmer is already a rare occurance; what if i need to work less than 20 hours some weeks? why is it so unthinkable to have a variable number of hours? and what if, sometimes, i’d only be up for some of it? what if i needed to telecommute, sometimes or always? they don’t have entry-level computer science jobs like that. not to my knowledge. and of course, on top of that, my social anxiety means that even scheduling the interview will take everything out of me, let alone going to it, let alone shining in it. i’m pretty sure i could never do a technical interview; the pressure would blot out any ability i had. and if i need accommodations for the interview process, then they can decide not to bother with my disabled self, and give some other reason for not hiring me. (like when i applied for an apartment, was turned down because i was on section 8, and then when i informed them it was illegal to refuse me on that basis in seattle, suddenly there was no reason, just “a lot of other applicants”. even though they let me put a deposit down when i applied.)

some of the accommodations i might need, like telecommuting, are already in place, but not for disabled people. they are for people who have “proven themselves” for years, they are not available to people who need them. 

people act like receiving disability income is a cardinal sin, a drain on society, a negative. but the same people make it impossible for me and people like me to be employed. we want to “contribute to society”. society doesn’t want to let us; it just wants to complain about us and call us lazy.

i’m not lazy. but sometimes i’m tempted to give up.

i am not pathetic

Written on April 3, 2009 by jo/e. 0 Comments

maybe it’s because i’ve been catching up on my rss feeds, which include many wonderful activist blogs, but i found that a political frame is helping a little with dealing with my pain and fatigue.

it came into my head most consciously yesterday when i was tempted umpteen times to call myself “pathetic” for being so exhausted. we’re in a habit of criticizing ourselves without much regard for implications… but i think it’s incredibly fucked-up and ableist to say that someone with extreme fatigue is “pathetic” because of what they can’t do or what is exhausting for them. i don’t like to claim to be a part of any group that should be protected in that way; but the implication holds. if i call myself pathetic for these things, i’m saying it is pathetic to be experiencing these things. if i minimize my experience, i can’t help but minimize by implication the experiences of others.

i’m broken and hurting and tired and even a little vocal about it. (on twitter at least.) and there is (should be) nothing wrong with that. it doesn’t give anyone the right to question or criticize me and it’s fucked-up of me to do it myself before others get the chance. because words make ripples.

that’s hard to hold to.

multiplicity and autism?

Written on December 4, 2008 by jo/e. 3 Comments

i know that i am not autistic, and i do not claim to be. i want to think about some things, but i’m working through stuff – i don’t necessarily offer opinions here, or endorse those that i seem to be offering. i’m wary of encroaching on space that isn’t mine. but there are some thoughts.

some observations:

  • there seems to be a higher than average co-incidence of multiplicity and autism
  • there also seem to be quite a number of multiple systems who have people inside who identify as autistic (of course i am thinking of my best friends indigo)
  • they’re both defined as “disorders” in the dsm but have huge contingents of members that don’t feel it’s a disorder at all
  • some traits (i don’t want to say symptoms because i don’t think either is a disorder) seem to be shared at least somewhat between the two groups
    - I’ve never met a multiple system that didn’t have someone inside, usually someone young, who didn’t stim, if i understand that term correctly
    -  i know many multiples, include myselves, that have insiders who have significant sensory difficulties or differences from the norm
    -  i have never met a multiple system or heard of a system that didn’t have insiders with significant speech or language difficulties
    - a lot of multiples, including myselves, have a really hard time with all kinds of social interactions
    - maybe it’s “just” part of ptsd, but multiples i’ve known, including myselves, seem to have trouble with certain stimuli (in my case, noises, crowds, unfamiliar situations, movement, almost anything associated with people being around)
    - i know a lot of multiples with OCD-like symptoms, and it seems like maybe a lot of autistics do as well? 
  • both groups are often considered incapable of self-diagnosing, or of having self-awareness, which seems to be complete and utter bullshit
  • mainstream people seem to be unnerved in similar ways by both groups
  • both types of being involve significant and intimate cognitive differences from some (perhaps mythical) “normal” template – perhaps why we’re so unnerving? 
  • many/most multiples have been abused, and autistics are at a much higher risk for being abused
  • i read a lot of people involved in the disability rights movement, and i often feel most at home at the blogs of autistics, maybe even more so than people with mental illnesses like bipolar, depression, panic disorders (though i have two of those three)
  • obviously these are getting more personal and thus more spurious, but our system has a weird fascination with autism that we try to keep under wraps because it feels like it’s not our place. we don’t want to be voyeurs or intruders.
i know the list should be longer and i am forgetting some things. i was talking about it with edges a little last night. i really want to hear indigo’s thoughts on this, since they obviously have much more of a claim/handle on this intersection than i do. at least what i would consider a more valid perspective. though i don’t know… it’s possible my fascination might have to do with parts inside that we don’t let out. we have some parts, that haven’t been out in years because we do all we can to keep them inside, that have some really strong echolalia. 
and i have a track record of not allowing myself identities that particularly belong to me – NOT that i’m suggesting i have anything that would ever be diagnosed or allow me space to claim that title, but that some inside might be like indigos – that there are people who seem to have a similar set of traits. 
i realized lately that i’ve always been a little jealous of people with physical disabilities – oh god, so much here could be taken wrong, but i swear i don’t pretend to any of this – and ej has actually been helping me realize that i have a lot more pain than i think the average 27-year-old does. again, i don’t think this makes me count as having physical problems – but having manifestations of body pain and such due to my multiplicity/ptsd/whatever might be some of the source of my envy. we (the myriad) always seem to envy who have claims on things we experience, even if we experience in a different or more mild way. it’s like if we don’t have severe crippling pain all the time, we must be fine, and can never consider it, even the migraines, when trying to go about life. i don’t know.
i know there are huge differences between experiencing some similar features and having any claim or any idea what it’s like for others. i know there are many people who don’t think of social anxiety as a disability, because everyone gets anxious of people sometimes. no; experiencing it on a daily basis, in swamping amounts, is an entirely different kettle of fish. someone in a thread for disabled queer people said he didn’t think people with mental/psychological disabilities belonged there or even were “disabled” because he thought of a disability as something that is always on. leaving aside the huge numbers of people with physical disabilities that can be incredibly variable, i don’t think people understand just how much the anxiety/depression/whatever IS always on.
i’m so afraid of not being sensitive enough. of being a privileged oppressor. but i guess… sometimes i just have to speak, and be willing to back down and to learn.

i only came here to talk

Written on December 1, 2008 by chris, jo/e and we don't know who. 1 Comment

what if we stopped running? o my god, please no. the nature of the thought is to avert. running is intrinsic. it feels like acid in my mind, we need containment, we need walls. this is ridiculous. nothing so bad could have happened. and if it DID then it wasn’t happening to US so what do we care? we should not be traumatized. ok, even the minimizers have to concede that was a dumb thing to say. but sometimes, yes, it feels like not our grief. i don’t think we even knew her. or if it happened more than one year. i know it didn’t happen every year. though something did.

should have been us, should have been us! the guilt is strangely not what’s dominating right now though. it’s the barbeque burnt hair smell, orange licking pink and making black, good lord we can’t even say it. we can’t even say it here. i don’t understand why. we’ve told people. everyone knows we have these spurious memories of b… i can’t type it… of sacrifice by fire. our fingers are jolting, stuttering, this is tough.

good lord, is it really true that we’ve always been oblique about this? no wonder our therapist forgot. her forgetting still stings. shouldn’t make such a big deal. it wasn’t us getting hurt.

it’s not the guilt, it’s the horror. all day, someone inside went hunting for the gruesome and the tragic. tsunami pictures. stampedes. that kind of thing. we didn’t know why until edge was asking questions and asked how long we’ve had trouble with therapy and we realized it was rather neatly traceable to the beginning of the month. and then we realized what we haven’t let go of, why we had to see. we’re usually pretty good at desensitizing ourselves to triggers – we pick at the scab until it’s all scar and it takes a lot to get under. so why the flinching, today, tonight? why seek it if we flinch? are we trying to get to where we don’t?

i want to throw up until all i can smell is vomit. i want to go so far away.

there’s no sound. there’s a little heat, but not really. just our face some. but the smell and the sight are fucking enough. 

i don’t fucking CARE if you don’t believe me, i know how it sounds and i’m doing this my way. of course we have people clamoring for a chance to deny, voluminously. but fucking fuck it. this is really fucking hard and i do it any fucking way i can. i’m tired of being alone. i’m tired of being all safe and gold-silence. and in the end i have to consider the possibility that this is real. i’ve certainly been struggling, there’s a lot of stuff to explain away in a denial.

really there’s not much though. what else is there to say? sometimes in the summer when i walk down the street and there are barbeques i want to run into backyards and smash their grill to pieces, shake them until they see how their stupid picnic affects others.

you have no fucking idea.

incoherent ramblings because i’m restless

Written on September 3, 2008 by jo/e and renee. 0 Comments

one of the things we talked about a bunch on sunday, with indigo and ej, was the privilege that functional people have. we talked about our own lives and came up with so many many examples. it was really eye-opening. it’s privilege that they even get to define as functional – because society is structured in a way that allows them to hold down a job. there is so much we non-functionals could do if we didn’t have to waste all our time and energy fighting with a system that won’t bend for us. (for example, in my view, agoraphobic people should be able to telecommute… so many things. have you ever noticed that telecommuting is granted only to those who have already proved themselves somehow?)

i’m all over the place. and i know this isn’t a new movement and we are all three extremely inspired by (and would maybe identify as a part of) the disability rights movement. but i think it is especially hard to create change when the thing that’s going on with you makes it so that you cannot ever follow a set schedule, makes it so some things (like organizing events) are just closed, not possible. blogging is good, but even here i don’t make my points clearly like some of the blogs i read. i can’t necessarily struggle out of my fog enough to refine my writing and be perfectly cogent. so i feel like my words are stupid and don’t matter.

anyway. this isn’t my real post on this. i’d like to write better. i do have moments when i’m able to write. but god, it felt so good to talk about these things and recognize a million little stigmas we buy into about ourselves. to consciously remember that we are not lazy, we are not choosing this path. we are not just going through what the normal people are going through – i swear, people seem to think that if they get anxious sometimes, they understand what it’s like to live with an anxiety disorder, day in and day out.

even therapists – they all wax so friggin enthusiastic about how we can heal fully, we can integrate or whatever, we can be fully functional. my therapist in santa cruz signed the disability stuff for me but she had to give me a little talk about how it wasn’t permanent. and i do hope to be able to work part-time someday. (otherwise this degree i’m trying for is kind of silly.) but i doubt i’ll ever be able to work full-time. i’ve come to the realization that some of the ways i’m limited are forever. i’ll never feel easy and natural with acquaintances. i’ll never be able to relax in public all the way. even if i achieve moments, i suspect that they’ll only ever be moments.

but i have a lot to learn from the social model of disability. and i think being labeled nonfunctional is like saying it is my fault, my problem, i am disordered. but i’m thinking about the society in this alien shore by cs friedman, where people could participate as their abilities allowed. and were able to use their strengths. there is so much i could do if i could spend my time doing it, instead of all this fighting. i’d need flexibility and more breaks, yes. but why does that prevent me from working? it’s so completely fucking society that’s not allowing me to work. then stigmatizing me for not working, and keeping me in the poverty it thinks i deserve.

i’m not together at all. i’m having a hard night. i’m so panicked about the move. the place was supposed to try calling today and then call me – i think i need to go prod them again, even though i did yesterday. another fucking wonderful “coincidence”… things like renting a place require so much more of me than they would a person who was able to afford to pay rent themselves, at a place of their choosing. so because i am not functional, i am expected to have to function so much more in order to get this place rented. and it wears on me so fucking much, every day. i love aeron but i can’t stand him, the closer i get to away the more i need it. 

i have never been safe in my home.

privilege and being a survivor

Written on August 19, 2008 by jo/e. 3 Comments

i want to try to write a post that is focused on a single topic. i feel nervous and shy, shaky (even though the types of blogs i’m modeling this after will probably never see it.) there really is a huge difference between journal entries and blogs-as-informal-journalism. is there room for both, here? i’d like to think so.

i have a great deal of privilege. as i start to pass for male (which still doesn’t happen all the time, despite what my friends might kindly think), i have yet another thing to add to the list, which already includes: white, educated, dominant culture, able-bodied, non-stigmatized weight/appearance, and probably more (please let me know if you think of something i should add!) clearly, if i want to be a part of social change, my role is going to be frequently, maybe primarily, that of an ally. i’m really interested in being a good ally, and i think one of the most important behaviors is to be able to admit when i make mistakes, run into blind spots, act on prejudice, ignore the experience of others.

i also belong to some oppressed groups: poor (though for me it is a privilege to live in the city, and being poor is part of the cost), disabled, queer, trans, survivor.

what i want to write about is the intersection between that last (which of course interacts a lot with being disabled), and the privilege i do have. i don’t have a thesis or everything figured out. i’ve just noticed something that really bears thinking about. before the other day, it didn’t even occur to me to include being a survivor as being part of an oppressed group. but via questioning transphobia, i found this: non-survivor privilege and silence. wow, that was an amazing thing to read. i was having a hard time already, but there were some definite tears of recognition in my eyes from reading that. really, go read it.

as a survivor, i’m pretty experienced at doubting myself, at deferring. if i disagree with someone, i’m liable to defer to them before i think (or even suppress the disagreement before i’m aware of it.) i tend to think i don’t have the right to take up space. i spend a lot of time trying to be invisible. i’m not saying that these things negate my privilege. hell, i am able to be invisible in large part because of my privilege. but i do think they interact.

part of being a good ally is not being silent and therefore complicit. if i keep my mouth shut when people are fucked-up about groups i don’t belong to, then i am participating in the atmosphere that allows oppression.

the other week, i had a really eye-opening experience. i was with ej at a social gathering (that makes me sound like i have so much more of a life than i do), and a person came into the group who made a lot of people uncomfortable. he made a racist comment, saying that at a bar the person he was with abandoned him for “some mexican boy.” prosody is part of meaning and the emphasis (on top of mentioning race when it did not seem to be relevant) was clearly racist. in hindsight, this is really clear. and at the time, when he said it, i remember feeling surprised/uncomfortable at the comment, but quickly assuming i did not understand the full context of the story. i was concentrating on being social and likable, which is a huge strain for me anyway. i accepted what he was saying without much of a blip in my consciousness at all, because these processes are so automatic for me.

later in the afternoon, he had gone away, and the people that were still there spoke of relief about him being gone. they congratulated one person for going out of her way to mention racism rather pointedly while talking about her classes (she is a sociology professor… i know i sound even more like i have a real life, but this was the only time i’ve been in that cool of a crowd, i swear.) i didn’t notice the pointedness, though i did really appreciate what she was talking about and was frankly fascinated by everything she had to say. when people congratulated her, i realized which comment had been racist, and remembered my discomfort. i felt really bad, really backwards, that i hadn’t been more critical of the guy in my thoughts earlier. but that’s the thing. i never feel i have a right to be critical.

i could give so many other examples from my life with aeron. (he thought it was a huge joke to nickname our anorexic part “fattie”. he practically defines hipster bigotry.) and as i was saying yesterday, i think not criticizing aeron has/had been a part of my survival for years.

i also really worry about my social anxiety making me seem like or become an asshole. i am quiet, tense, deferential around strangers. i give them a lot of space, especially when i’m having a hard time. for example, on the bus, i generally prefer standing to sitting right beside a stranger. if aeron is there though, i’ll try to find him a seat even if i can’t have one, since he has hip problems. i was doing this on the muni in san francisco and a large black woman noticed and patted the seat next to her. normally i would just try as politely as i could to say no, but i worried so much she would think it was because i didn’t want to be next to her. so when aeron wouldn’t sit, i did.

also in san francisco, on a crowded bart car, a person in a wheelchair was having a lot of trouble getting in… the door didn’t line up very neatly to the platform. they had to try like four times. i really wanted to help, but there was no way i could handle that level of interacting with someone. i was really pissed at the rest of the car for just ignoring this person, but how could i be when i didn’t get up and help? (they finally made it in on their own.)

i want to find my way through this thicket without making excuses for myself. when does my valid experience end and the making excuses start?

on the plus side, healing from my abuse will make it easier to be assertive. but in some ways my personality has been permanently shaped by what i went through. how can i be an ally if i am not able or willing to speak up, help, challenge privilege? is there a solution, or can i only notice the problem?

even noticing the problem is a part of this whole interaction, because at times we really beat ourselves up over it. we beat ourselves up over everything. when is the beating-up valid shame at my privileged place in society, and when is it just an excuse to be down on myself?

as i said at the beginning, i don’t really have answers.