We Are Not Like the Other Kids

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We Are Not Like the Other Kids

By Merlin Missy

(Merlin Missy has been active in online fandom since 1994. She likes

fanfics with plots and happy endings.)

Published 04/25/2008

Fandom and disabilities and how these are not mutually exclusive.

Before we begin, I will have you know I have put off writing this

column, although it was specifically requested by my lovely editor.

When she first brought the idea up, it was partially in response to

my previous essay " My Boundaries, Let Me Show You Them " (which was

itself in response to two very similar experiences by two friends of

mine the previous week regarding fellow fans who Did Not Get It).

In " Boundaries, " I laid out a series of helpful rules for dealing in

social situations with other fans. My lovely editor thought we ought

to provide context for our readers regarding the reputed high rates

of social disorders such as autism and Asperger's in the general

fannish population, whereas I simply took it as a given.

Like probably quite a few of you reading this essay, I (and my lovely

editor, who is writing her own essay on the subject) are undiagnosed

Aspies. There are many reasons to think this. I have a lot of

difficulty with tasks if my schedule is disrupted unexpectedly. I

pace obsessively when I'm agitated or trying to think, and have since

middle school. I can't read facial cues, which means I don't tend to

get sarcasm or even a lot of humor in regular conversation unless

it's telegraphed. I tend to prefer animated fandoms because I don't

have to try to figure out what the actors are trying to portray with

their body language. I can't drive well because I can't process the

amount of change involved in traffic patterns around me (the terrible

vision adds to this, but honestly, it's the variables that send me

into the fetal position). I've had to train myself into various

social courtesies, usually by mimicking someone else. (This was

unfortunate in the case of patterning a particular behavior after

that of a friend who actually has an Asperger's diagnosis now.) I

settled early into " Jeans go with everything " as a fashion rule

because I don't get clothing, and I didn't wear makeup to my own

wedding because I didn't see the point.

And there's the matter of Boychild, who has an educational autism

diagnosis and spent his first year of preschool in a classroom geared

towards kids who need extremely intensive structure in order to

function. He started to talk just before he turned four, and while he

still has meltdowns when he's overstimulated -- he broke his lamp two

weeks ago over something that escalated from wanting to wear a

different PullUp -- he rarely punches me in the face anymore. His

wiring is not like the other children's, not even his sister's, and

it's something easily traced back to the same (lesser) damage that

his father and I exhibited when we were young, and still do today.

(Not for nothing are we both training to be chemists. I for one was

born to serve stoichiometry. *pause* Look it up.)

I talk about these things in my Livejournal, usually under a Friends

lock because I have issues about letting personal information like

this out to the world at large rather than a handpicked group of

confidantes. It's hard to talk about things for which I don't know

the outcome, and it's hard to say that yeah, this damage is my damage

and his dad's damage. But it's also important, because this explains

a lot about why we do what we do. Mr. Merlin spends his evening

playing Dungeons & Dragons Online, because then he can interact with

people from a safe distance. And I'm here in fandom. I first got

online in 1992 when students at my college were given email accounts.

I found my first online Star Trek fanfic by a Gopher search. (*longer

pause* No, really. Look it up.) The people online made so much more

sense than the people in the real world ever did, and I never looked

back.

And that's where I'm coming from.

I'm not alone. Not by a long shot. Fandom is a gathering place, not

just to squee about our favorite shows, but also for people who

really do have a better time of it when others are safely at arm's

distance.

Mara, who has social anxiety and panic disorders, said, " I find it

much easier to talk to people online. I love having the ability to

read over what I said, to make sure I didn't say anything wrong, and

also being able to think about my response before I make it. Although

I've certainly screwed up online, I do it a lot less frequently. "

Mara has been online since 1989. " I have the best network of friends

and support in both places ... but that's mainly because a bunch of

my online friends have become real life friends and some real life

friends have also become online friends. In terms of support, my

online friends are the best ever, no matter where I know them from

first. Getting me through a difficult pregnancy, all my anxiety and

panic issues, and many many family problems ... well, I couldn't have

done it without the folks online. "

, who has Asperger's and severe arthritis, said, " I find it

easy to talk to people [both online and in real life], but I am

generally better able to interact with people online than in person.

I have a far better network online than I do in the " real world. " My

father does not use the internet, and my mother only sporadically. I

see each of them about once a month. Online, I see friends in faraway

places every day and keep up with their lives on a much more personal

and detailed way. "

Jane agreed. " I find it much, much easier to talk to people online,

and I have a better network of friends online, but I do have strong

friendships and interpersonal relationships in the real world, too. "

Jane has a classic autism diagnosis, but as she puts it, " [M]y

outcome has been quite a lot better than my best-case prognosis was. "

Matt, who also has Asperger's, had a different opinion. " It's easier

for me to talk to people in real life, hands down. While I can

articulate my thoughts better on-line I'm always worried that I've

upset someone and get upset if I don't get immediate responses. I

keep these feelings to myself and don't try to get a lot of online

sympathy for myself but these feelings are very real and hard for me

to deal with. I'm more annoying in real life but at least the people

I've talked to have gotten used to me. It's a lot easier for people

who don't know me and have the luxury of internet anonymity to be

rude and mean to me. I think a LOT of people are more mean-spirited

online than they'd ever dare to be in real life and that's something

I often have to keep reminding myself. " He added, " I have MANY more

friends online than I do in real life because my ticks and behavioral

quirks would likely drive most 'normal' people away. And since I've

made no secret of my illness online I'd like to think these same

friends would treat me kindly in real life too. "

Amy said, " I find it easier online with many, though I enjoy talking

to people I already

know in the real world quite a lot. I often prefer to do much of the

preliminary discussion online so that I can think through my answers

and ideas, so that I can get a feel for the topic and where everyone

(or the other person) is coming from. I do like direct, in-person

discussion, but I find that it's easiest with only one other person.

Talking to two people at once is manageable, but requires more

energy. When the count goes over two people in a conversation, it

becomes very difficult. " Amy's official diagnoses include PTSD,

Asperger's, depression, and anxiety. Social cues are a problem for

her. " When I am dealing with people--especially those with whom I am

not highly familiar -- I have to work hard and thus spend a lot of

energy to discern whether they're joking or serious, and often to

understand what they mean when they talk. I've learned, by rote, a

great many expressions and tones, but since those vary from one

person to the next, and since they can be feigned, I'm often not

certain what is expected of me or where I stand in a conversation or

an activity. " She added, " Real people often have a lack of

directness. Worse, they often employ political and interpersonal

games or teasing, and I cannot tell when those are being employed and

when they're not. Sometimes I guess right, sometimes I miss vital

cues, sometimes I assume an inaccurate degree of sincerity, sometimes

I am overly suspicious without cause. "

Jane has similar difficulties. " I'm not naturally good at interacting

with others, reading social cues or conversational cues, reading

faces, etc. I've got other minor problems -- specific habits,

repetitive activities -- but mostly it's the interacting with people

that's hard. I compensate in a number of ways. I pay close attention

to body language, for example, since faces are so hard for me to see

or read. I try to interpret social interaction and conversation as a

puzzle, and the great part is, I'm never bored - I always have

awesome puzzles to solve. " She added, " People tend to think I'm

stupid or dishonest, because unfortunately a lot of my natural body

language -- avoiding eye contact, for example -- reads that way to

them. I do terribly at job interviews and any situation where first

impressions really count. "

Fandom gives Jane another option. " One of the biggest ways I adjust

my life is fandom -- in other words, I do most of my social

interaction in the relatively controlled, limited venue of the online

world. Online, my disabilities are far from obvious; I'm a strong

written communicator. And I sometimes think that there's an advantage

in being weak in face-to-face interactions online; a lot of the

stupid mistakes people make that cause wank and unhappiness come from

people relying on skills and behaviors that aren't present online --

expecting others to hear sarcasm, for example, or know something is a

joke, or correctly interpret something that's got several potential

meanings. All of those things work well in conversation, because so

much non-verbal communication goes on, but not so well in written or

online communication. I don't ever rely on those things, so I have an

advantage online. "

" Although I love social interaction, " said , " I have immense

trouble reading other people's cues. I often talk a blue streak and

don't realize that people are bored, uncomfortable, or wanting to end

the conversation. I have a tendency not to realize I've transgressed

other people's boundaries. I'm often held responsible for

not 'hearing' things that I don't have the equipment to 'hear' --

it's like people expect me to see and understand their vocal and

visual cues, when I'm functionally blind and deaf to them. "

Mara said, " I think the hardest thing [in the real world] is talking

to other people. I constantly worry that I might have said or done

something wrong, and if I make the smallest social blunder, I obsess

about it for days (if not years). I try to avoid making phone calls,

because I find that especially uncomfortable. And I'm terrified by

the thought of arranging a get-together, even to have lunch or a

playdate with the kids. I do manage it sometimes, if there's a way it

can come up in conversation or something. But the thought of just

contacting someone and saying 'Hey, let's have lunch!' freaks me out.

It's very frustrating trying to explain to people that I didn't call

because I was terrified to do so, not because I don't like them!

Sometimes I manage it, but usually not. I don't even call my best

friends, who I've known for decades, unless I absolutely have to. "

Sami, who has been online for about twelve years, said that her

primary psychological issues are " depression with a side order of

anxiety. Sometimes things are just too difficult or too terrifying,

and it can be really, really hard to overcome that. I've had to

adjust my lifestyle to maintaining a careful attention to all the

things that help prevent triggering episodes of anxiety or extreme

depression, which is somewhat wearying. The list is long. Frustrating

from the point of view of my psychological issues is the people who

don't understand that depression and anxiety can both be a real, even

debilitating problem. That sometimes, no, it really is absolutely

beyond me to overcome it with willpower alone, and that yes, it

really is critically important that I take my medication every day

and eat properly or my brain ceases to function. " Sami also has

chronic pain due to an accident. " Physically, being long-term injured

and in a lot of pain makes a huge difference, and not just because I

can't work or study right now. I have limited capacity to do things,

because the pain gets to me, and pain is exhausting, as is not

sleeping well because of pain -- I have to take breaks to lie down a

lot, and I take a lot of painkillers, and there's some things I used

to do for myself that I now have to wait until someone's around to

help me. Also, getting out of the house at all is hard - I used to be

free to go where I wanted when I wanted, but now I can't operate a

motor vehicle, so I'm dependent on bus timetables. Which is bad

enough, but buses are also very painful for me, because they're kind

of jerky and so on -- it's agonising and exhausting. "

Badger, who's been online since 1986 and on the same MUSH since the

early '90s, has severe arthritis in addition to depression. Her

mobility problems affect much of her lifestyle, including " [g]etting

about our small condo in various ways, never mind getting OUT of the

house frequently. Our couch is sagging, and I can't get off of it

without assistance of some ilk. Also, I can't get out of (and

sometimes into),the tub/shower without making sure someone is

available to help me out. Between the lipedema in my legs which mean

my legs need to be elevated, and the more than occasional arthritis

and back problems, I've been spending a lot of time in bed, which

sucks. The condo unit we're in is on the second floor, which brings

another whole set of hassles. " What's the most frustrating thing for

her about other people? " Frustrating? 'Oh, you're just fat and need

to lose weight and everything else will be fine,' (which usually

sends me deeper into Bipolar II depressions.) " She added, " Online,

generally, my mood swings and random pain are taken as part of who I

am and always have, to a certain extent, been. Or, as some friends in

both places put it: 'What'd you hurt NOW?' ;-) "

Jane said, " When I tell online people [about my autism], I get either

curiosity or acceptance; the online world is very welcoming to those

of us with, um, limited social skills. The exception to this was the

first time I told anyone, when I broke into a discussion where people

were considering whether or not a character was autistic. I argued

no, based on personal experience and knowledge, and pretty much

killed the conversation dead; I've since learned not to wander into

that particular argument, which crops up in many, many fandoms. "

" In fandom, online and IRL, " said Amy, " there is a tolerance for an

even an expectation of most folks having something 'off' about them.

One of my friends recently met someone through work whom she

suspected of being fannish. She didn't have the chance to drop the

key phrases and 'code words' but she felt certain he was 'one of us'

when they had lunch and he said he had quite a few food allergies and

sensitivities. The fact that it is essentially a given means that far

more people in fandom are knowledgeable about people with differences

and are knowledgeable about many of the more represented disabilities

(depression fibromyalgia, anxiety, Asperger's/geekiness) and are

willing, for the sake of someone who loves the same niche of

entertainment, to make modifications and accommodations for my

differences or someone else's. It's also more likely, since other fen

often have their own challenges, that they will be more compassionate

toward and understanding of my challenges out of solidarity. "

Matt said, " In the same way that I try not to make my illness define

me in real life I try not to do it online. I'm not one who does a lot

of 'Goodbye Cruel World' posts if I can help it even if I'm not

afraid to call someone out for being a butthole about it. That said,

I have seen a LOT of cruelty from online fandom for people who

haven't managed to integrate with fandom as well as I have

(relatively speaking). There is STILL a huge stigma against mental

illness in society and it extends to online fandom as well. "

Mara said, " The best example is a friend from fandom named ly,

who called me while I was on bedrest during my pregnancy, and asked

if she could drop by and visit. She showed up with Kerrie and Nate

and in tow, and the four of them brought me books and comics to

borrow and toys to play with, and kept me company much of a day. All

of them folks I'd met in person maybe once or twice, and they did

more for me than many of my real life friends. I have good friends in

real life who aren't also online, but I just don't get to talk to

them as much...partially because of my phone and contact issues. But

online, I can put my worries and anxieties out there, and I don't

feel like I'm calling or even e-mailing someone. "

Badger said, " I find it fairly easy to talk to people in general,

although I find fandom to be more accessible and family-like. I've

got an equal amount of friends and support in both areas, but having

not been social lately, I seem to like best when people come to me,

or at least call me up and ask me to do things RL. When I'm online,

though, the friendships are just as strong, but the only assistance

that can be really had is emotional. (although if I got the hugs RL

that I got VR I'd be a happy Badger indeed!) Having been online a

good long time does help in that respect, though. My long-term

friends both VR and RL have followed me through the series of

incidents that brought my legs to where they are today, as well as

the car accidents that have affected my neck and back (and shoulders,

etc). " She said, " I've been honest with most things all the time,

although I do wish that people would understand what the

word 'esque' means, without me having to explain it. (look it

up, people! ;-) I'm proud of being fat, and comfortable inside my own

skin after years of self-loathing. Of course, it also helps to have

been re-diagnosed as Bipolar II, rather than as just depressed.

Medication and therapy help, but are not the whole solution. Patient

friends are good for me, as I find my way through the maze of medical

doctors who seem to have no clue what best to do for me, even after I

tell them where I want to be referred. Nobody can be patient all the

time, of course, so I have to be patient too. Learning things as I go

along and sharing them with friends is the healthy way to go. There

were some parts of various bits of online fandom which were extremely

unpleasant when I was younger, and I've learned from that where I can

safely hang out online. Aside from those experiences, online fandom

of various natures has been fairly decent towards me and my needs.

Between TinyTIM, blogging, and a few other places, I find myself

mostly comfortable, but I have to try not to rock the boat with my

mood swings. [What would I] change? Hrm. A little more kindness

wouldn't hurt. I mean, I'm not made of porcelain, but gentleness and

kindness are up there on my list of things I want more of, although I

think I have always thought so and probably will always think so. I'd

like to spend more time with my VR friends that are local RL. I have

no desire to be the queen, but I'd like to be princess! ;-) (less

responsibility, more cuteness!;-) "

said, " I wish people would use emoticons! It's so hard to

read tone into people's typed speech without them. The best thing is

that most of the time, if I make a mistake we can sort it out and

have a record of the conversation or interaction that we both can see

(unlike in real life, where things degenerate into 'you said I said'

all too often). "

" Fandom tends to relate more to my psychological problems, " said

Sami, " and fandom tends to be fairly strong on things like including

trigger warnings and so on. If I were to change anything, I'd

probably want to push for a little more detail on those warnings - I

know it's possibly a little spoilery, but " potentially triggering "

doesn't give enough detail. Triggering of WHAT? And I would also want

everyone to be aware of that stuff, because sometimes people aren't,

and it can be kind of traumatic. [if I had a magic wand] I might also

change it so that the canon sources had to do that too, since I've

had shows I really didn't expect to be upsetting hit me in the Bad

Place. "

Jane said, " There are two most frustrating things [about interacting

online]: first, people expect me to be in real life the way I am

online. And I am. If you know me well. But until then, well, I'm not

going to be using my real personality in our face-to-face

interactions, because I'm going to be working too hard just to

function. And, second -- well, this isn't exactly frustrating, but

I'm bad at figuring out what my social obligations are in an online

venue, just as I am in real life. It took me forever to understand

that I was actually supposed to read my friends page -- I'd been on

LJ for six or more months before I figured that out. (The social part

of social networking doesn't come naturally to me.) It took me years

to understand that I needed to reply to comments, and that replying

was important, and even now, I'm very bad at replying to comments.

(It's social interaction, in a way that LJ posts are not. And it

drives me crazy when people say, 'Replying to comments is so easy! I

can't understand why anyone would be rude enough not to -- it takes

thirty seconds!' Uh, no, it doesn't, not for everyone. I love getting

comments and I want to reply to every one, but it can take me ten

minutes to figure out what to say and then say it.) The best thing

about how people relate to me online is that they take me for totally

normal. "

" I think that my needs fit in really well with fandom, " Mara

said, " so there isn't much I'd like to change. I guess the thing I'd

really like is less wank and hate, even if it rarely touches me

directly, because part of my social anxiety is that I actually become

physically ill when I see that kind of anger. " What about meeting up

with online friends in the real world? " I think I've met about 50 or

so people in real life after meeting them online. On the whole, it's

gone really well, although I do freak out a bit beforehand and

afterward. I do great when I'm meeting a big group of people, because

then there aren't any awkward silences or anything, and if I get

nervous, I can just be quiet for a bit. Fandom people seem to be made

of sheer awesome "

, who's been online since the early '90s, has been blind

from birth. She tells people up front about her visual impairment,

and she said she does notice a difference in meeting online friends

in the real world, " but I don't know that that has much to do with

the blindness. I think people set up certain expectations in their

head about people online and the real person doesn't match up to

those. "

disagreed. " I am of the firm belief that people are no

different online than in real life, and that's generally what

happens. " He offered a bit of advice for people meeting him for the

first time. " Speak slowly and clearly. Look at me so I can read your

lips. Learn the basic ASL signs for 'help,' 'okay,' and 'need' -- I

use them when I become nonverbal. Don't touch me unless I

specifically say it's okay to do so, and don't take one permission to

touch as a blanket permission from then on, either. Try to keep us

out of fluorescent lights, and away from noisy or crowded situations,

because those will make me melt down. Yes, it's okay to open doors

for me, especially if I'm in my chair. Be careful not to put your

foot between the wheels of my chair -- this has happened more than

once, with disastrous results and, in one case, a nearly broken toe

for the person who did it (I didn't know her foot was between the

front and back wheels of my chair). Online, please don't read

anything into anything I say (that actually goes for 'real world,'

too). Please tell me if something I say hurts your feelings; it's 99%

certain that I did not mean it that way (again, this counts for 'real

world,' too). Please let me initiate contact if I don't already know

you very well. "

" I repeat things A LOT in real life, " Matt said, " and the best thing

people can do is accept it and move on. If you really think about it

it's annoying, but me repeating things is a shorthand for 'ummm'

and 'uh' in every day conversations. I oftentimes have my own lexicon

or language for speaking with other people but I try not to use it

for people I've just met who aren't professionals but I oftentimes

can't help it. It's similar to Tourette's Syndrome even though I've

never been diagnosed with that. The best thing to remember when

dealing with me is that I can be very silly or affectionate and that

I don't mean any harm in that even if it might make other people

uncomfortable. I try my best to limit it among strangers but if I'm

comfortable around someone I sometimes think it's okay to just be

myself. "

Amy said, " Jokes: for me, they ARE still funny if you have to explain

them. In fact, if I don't get it and you don't explain it, it WON'T

be funny since I will never know WHY it was funny. I will still laugh

out loud -- several minutes or hours later -- when I finally do get

it or get it explained. " She added, " I have a tendency to over-share

on just about everything from personal to factual information. It is

helpful to tell me, 'I got it,' or 'That's plenty,' or 'TMI,' to cue

me to stop since my filters are poor. I also tend to be long-winded

about the Entire History Of Everything in telling a story, and it's

often necessary to ask me to get to the point already. "

Badger said, " Don't discuss how horrible it's been for you to loose

that last five pounds -- especially if you're skinny to begin with.

Overall avoid weight unless I bring it up. I'm not breakable, but I

am relatively easily damaged, so don't go suggesting 10 mile hikes. ;-

) (or even 1 mile ones!) Please be patient with the fact that I walk

extremely slowly, and don't like being left behind with nobody to

talk with. If I'm using my scooter, be careful of the wheels, but

don't make wide swings around it either, I'm not likely to run people

over! (and I'm overcautious in crowded places, like at SF/F

conventions.) Be nice, be honest about who you are. If you aren't

comfortable hugging (or have a religious prohibition against it) tell

me! I'll pout for a minute or three, but I'll adjust. I find out a

lot about a person by hugging them, somehow, though. Oh! And I love

to talk. ;-) "

Sami said, " If there's things I can't, physically, do for myself, or

can't do without a lot of pain, it's great for you to help me. I

might even ask. But there's ways to do this that reduce the

embarrassment for everyone. Basically, if you think you see something

I'd need help with, and you want to help, offer; if I decline, accept

that, I probably have reasons. If I accept, I'll be grateful, and

I'll thank you, but understand that having to get help with simple

tasks is somewhat humiliating for an adult, so just acknowledge the

thanks and move on, don't talk about it further. My friends are

awesome examples of how to be around someone with a disability. There

are some things they do for me automatically now; it's just less

embarrassing for all concerned that way. For example, my best friend

intercepts my plate when we're eating together, cuts up my food for

me, and then hands it on without breaking the flow of conversation.

I'm grateful for this. I always thank people for doing things for me,

but the way to make it easiest on someone with a disability is to

treat these things like they're not a big deal. We know you're

helping us and we're glad of it, but at the same time, needing that

help is a miserable feeling. Strive to make it easier on the disabled

person to accept that help without embarrassment. Trust me, we notice

the help, but if no-one else did, that's pretty much ideal. And last,

but actually MOST IMPORTANT: if you know someone has a painful

physical injury, avoid jostling them, don't touch the place where you

know they're in pain, and try not to forget the injury exists,

because we'll probably be really polite about it, but ow. "

Mara said that the advice she would give is: " 'Mara looks like a

complete extrovert with no issues whatsoever, but inside she's

freaking out that you're going to hate her. Just keep that in mind.' "

" Normal people don't do well with the atypical under most

circumstances, " Jane said, " but if they're prepped, they're generally

a lot more comfortable. So, as I said, I try to manage their

expectations, prepare them for what I'm like. I do give the advice,

although it's not so much advice as it is a sort of bulletin: this is

what I'm like, this is what I'll do, this is what it means. "

said simply, " Relax. Have fun. Don't be afraid to laugh. "

I'd like to thank everyone who took the time to talk with me. It's

not always easy opening up to someone you don't know, especially when

it's going to be posted for the world to see. The folks who

volunteered have been very kind. There's more folks out there, with

physical, mental, social and other difficulties, and it's likely

you're friends with them, or even that they're you. This is fandom.

We are not like the other kids. Some of us have trouble getting from

place to place, and some of us have trouble talking to people, and

some of us flat out dislike the real world because it makes no sense,

but all of us wear ducks on our heads, and we're gonna be here as

long as there's a " here " to be had.