I am looking for a word that doesn't yet exist, at least to my knowledge. This word would ideally describe the particular grief that results from wanting to do things, and being unable to do them due to disability. For instance I want to read novels and non-fiction books, but mostly can't. I want to crank out fanvids but have had a hard time learning the software and concentrating. I write very slowly, which means to me that writing is very important to me-- I work at it despite my pain and other barriers.

This grief involves frustration, stymied ambition, sadness, bargaining. What words come to mind for you? Can we create such a word?


I had my nerve block today. Dramatic immediate pain reduction. It's easier to breathe, talk, think, do stuff. My doc gave me a little more of the drug than last time, as I told her that it hadn't seemed to work as well over this last winter. Hopefully with the weather improving, my sinuses will be less awful.

There is something peculiarly awful about pain in the face. Even a horse will turn her hindquarters into the wind to protect her head.

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The dog I'm sitting is an Italian Greyhound with one eye and i LOVE him. It's especially nice to have an extra dog around when my roommate is away; it's good company.

1. what are the words you do not have yet? [Or, “for what do you not have words, yet?”]

Those things that are small traumas, "it's not really a trauma but"; like microagressions but not so micro.

More words for coming out: are you coming out to yourself? to others? Are you in the long process of de-brainwashing yourself? Are you still de-brainwashing yourself after years and years? Do you hear a song on the radio, a love song without any gender specified, and assume it's about straight people?

More words like "Hangry", which is a good word; I'm cranky because I'm hungry, I'm cranky because I'm in pain; I'm cranky because....

More words for different kinds of love. Love is love doesn't work for me. I like distinctions and nuance. Love for the world; love for nature; love for friends; love for fandom; sudden and gradual loves; ones that fade and ones that endure. And what are things that help make love happen? What are those things?

Words for surviving, for getting through, for recovering, for dealing with shit that you have to do but can barely get yourself to do.

And more words for physical, chronic pain, which is so boring, and so difficult to describe.

Thanks to Gregg Beratan on Twitter for this idea.

Spoon Theory is useful to many people as a measure of energy and fatigue. It is difficult to wrap your head around what chronic pain, fatigue, and illness are actually like, and I say this as someone who has them. We all tend to normalize our experiences and we think that everyone around us must feel like we do-- and yet other people are somehow accomplishing more. So spoon theory is helpful in validating our fatigue and providing the phrase "out of spoons".

Yet a limitation of this theory is that it's a deficit model: It assumes that something is wrong with us, rather than something being wrong with society.

Instead of saying "I'm out of spoons," try saying "The world needs to give me more time to rest" or "Accommodations for my fatigue will help me accomplish this task."

The deficit model is the dominant narrative of illness. And it can be seductive: it feels like there is something wrong with me. But the social model of disability states that it is society that disables us-- that it is moral and normal to need more time and more support and more rest.

Content note for discussion of cursing, violent language, rape culture.

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I said earlier on twitter that I hate the internet meme-speak that goes, "you're all fired for not telling me about" X thing.

I could probably write hundreds of words about why I hate this phrase, some of which have to do with how I was fired and how horrible an experience that was. Some of which have to do with guilt, and entitlement, and how instead we should be supporting each other.

I'm going to skip over that and say: thank you to all my friends, acquaintances, and internet strangers who alert me to cool things. Thank you to those of you who post reviews, recs, and anti-recs of media in your journals and on Twitter or Facebook or Pinboard or anywhere else. Thank you to those of you who maintain and moderate communities, web sites, and blogs such fancake and Geek Feminism. Thank you to people who run fan works challenges. Thank you to those of you who code, or work on anti-spam, or tag wrangle for these websites that I use and love. Thank you to people who help run conventions.

You're not hired, or fired, because most of you do this for fun-- without any kind of material compensation. I don't consider it your job to tell me about something that I could, after all, look up myself (but it would take a ton more time, and I might never find that awesome fic!). You do this to contribute to your community, and because you feel passionate about the things you like and love, and I appreciate and value that.

Just so you know, I would never fire you. ^_^

Occasionally I wonder if maybe I *am* the language police! Maybe I *am* too sensitive and it's not my job to tell other people how to talk or write, etc.

A few things reassure me.

One, lots of other people pay just as close attention to language and its political uses as I do, and some of these people blog about it. Some people blog about things I've never thought about, so maybe the things I notice are worth writing about.

For example:
Dave Hingsburger: Non-traditional doesn't mean unimportant.

The term I use, I insist that others use when they are speaking with me about someone they support is: non-traditional communicator. (As opposed to "non-verbal".)

Lydia Brown: Why the term 'psychopath' is racist and ableist. (Note: this post contains some upsetting language.)

Antisocial Personality Disorder, the diagnostic category that comes closest to approximating the lay definition of psychopathy, is most often a tool for criminalizing poverty, blackness and brownness, and disability. It is the diagnostic label that legitimizes non-compliance as a mental health problem.

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Two, I find language and its uses fascinating. I will think about it anyway, so I might as well write about it.

Three, there are some phrases I use that make sense to me because not only do they seem like more accurate metaphors, they make the world a little kinder to live in.

For instance, when we speak of "lowering barriers" or obstacles, that seems kinder and easier than "overcoming obstacles". Lowering barriers is a group effort, a structural accomplishment that is done by many and benefits many. It agrees with the idea of the social model of disability. Overcoming obstacles might take teamwork, but it tends to focus on one person's drive, ambition, and success, and falls in line with the "supercrip" stereotype.

The same is true of interdependence vs. independence.

Language is subtle and it influences the way we think about ourselves and our world.

I hope you all know by now that language and its effects are an issue near and dear to my heart. Language can be hostile or welcoming, centering or othering. This is particularly on my mind as I look at various "accessibility" policies for conventions in the SF/F world.

I am creating List of such conventions for the Geek Feminism Wiki. (This was inspired by their List of cons with anti-harassment policies.)

First, why is it helpful to have such policies online?

Because information is good access. The more information you can provide to people, even if it's to say that there are barriers to access, the better people can plan for their trip.
Secondly, if people have to ask to receive information, that in itself is a barrier. As many of us with anxiety, fatigue, or other disabilities know, it can be difficult to make that phone call or send that email. A lot of us are used to dealing with people on the other end of the line who aren't our allies and might make our lives more difficult when we ask for information.

As and someone working access, do you really want to give out the information again and again? Why not just do it once, and then point people at your webpage or printed materials?

I know there are some conventions that have had good access but don't have their policies online. Open Source Bridge, I'm looking at you. :)

Other conventions have their policies online (good!) but then make all kinds of mistakes with language. They send signals that they really don't want PWDs to attend at all, that they think people are faking disabilities in order to get good seats or other services (no one does this! seriously), and otherwise hostile language.

Several of these pages use the term "special needs". I don't think very many people on this planet have special needs. Most people have the same needs, it's just that some of us need accommodation in order to enjoy the same events at conventions, like getting to the programming rooms in a timely manner, being able to move through the hotel, being able to understand what is going on, being able to visit with friends, etc. I realize special needs is an introduced PC term for disabled people, but I am just not sure that it fits or is accurate. It makes it sound like disabled people want "more" (like champagne) when what we really want is the same stuff as everyone else (water in a glass we can hold).

Whenever you want to say or write "special needs", I suggest you substitute "accommodations" instead.

Let's Break down some of the specific policies and why they are problematic:

DragonCon

"We will have the Con schedule in large print available (to be read at our table or we can email a copy to you to print or download to your screen reading device)

If you have low vision, you better have a device for reading the program. Otherwise, you have to sit at the registration table to read the program! It's apparently too hard for them to print off a few more copies for low-vision attendees. (Remember, this is a for-profit con.) I really don't know why you would want people clustered around your reg desk that way.



We offer 5 stickers for badges, based on needs:

Wheelchair seating: for our wheeled folk, of course.
Chair in Line/End of Row: for non-wheeled folks with mobility impairments.
Proximity/ 50 ft. to Screen: for visual/lip reading access.
Sightlines: for access to the interpreter, safe space for working animals, and certain other unique situations.
Medical: This sticker is merely a place to put emergency information if you have a medical condition that the EMT needs to know about before they put you in the ambulance. It does not entitle you to any other services.

A person has to out themselves in order to get any of these services. It's right there on one's badge: everyone you interact with at the convention then knows you are a disabled person. It also positions whoever gives the sticker as an authority. I know a lot of people with mild hearing loss who don't consider themselves disabled, but who might benefit from line-of-sight seating. Such people wouldn't want to get a sticker even if they might use an otherwise reserved chair.


One important thing to remember: we will do our best to make sure events are accessible to you, but that does not mean we guarantee you a front row seat, or head-of-the-line privileges. If you are going to a very popular event, you must get there extra early to get a good seat, just like everyone else. The accessible seating will not be in the front row.

I guess if you move slowly, are delayed by crowded elevators, etc., you are screwed. Several other websites said this. Maybe these conventions should put a cap on their membership? (Oh wait, DragonCon is for profit.)

Phoenix Comic Con This is the worst one.

You get a special badge! Lucky you.

But the badge doesn't get you:

· Early access to panels and special events
· Guaranteed access into special events, photo ops, autographs, or panels.
· The ability to skip lines

So fuck you I guess! Especially if you are someone who can't stand for a long time!

Service Animals are always welcome at the Phoenix Convention Center. Animals are sometimes questioned if the need is not apparent, so we suggest attendees carry documentation with them for their companion.

Does anyone know if this is actually illegal? It sounds illegal to me. [eta: it is, see comments] Then again, it's Arizona... I don't think "welcome" means what they think it means, also, to be pedantic, you won't get very far questioning an animal!

Some of the other policies are much better, including for ReaderCon, FogCon, and Arisia (and WisCon, but no need to toot my own horn--plus, I always want to improve.) Some suggested bits of activism for those involved with conventions, or even those who aren't but who can do emailing:
*Encourage Conferences and Conventions to develop Access policies and list them online. Professional and Academic conferences, trade shows, etc can be included here.
*Encourage those with bad policies to improve them.

Comments and suggestions welcome.

I really appreciate that hc_bingo has changed its prompts to reflect events rather than identity categories (for instance "loss of vision" rather than "blindness").

Thanks, mods.

The "Ehrmagerd" meme needs to die.

Perhaps it is making fun of the way certain disabled people talk, in which case it is mean-spirited and ableist. Perhaps it is making fun of Valley-girl speech, in which case it is misogynist and still mean-spirited.

I am not humorless: I love memes; I just think they work best when pointing fun at those in power, not those who already lack power. In other words, I don't like it when humor is use to reinforce existing oppressive structures.

Feel free to link this post.

I had a rather involved, mostly non-heated argument (as much as I can be non-heated in an argument) with a friend the other day about language and I'm still thinking about it so I want to write it out.

My premise is that if you are a gay man, don't say "ew" or other such words in describing your reactions to women's genitalia. At the very least, be more tactful, because it's just rude to refer to someone's body that way. (I got him to agree on this point). Furthermore, you might think it's just about your own personal reaction, but we live in a misogynistic world, and your reaction is colored by structural misogyny. My friend didn't agree with me on this point, but I still think I'm right.

I didn't say it quite so clearly in the actual argument, of course! This is one of the reasons I stopped reading Dan Savage's column: I got tired of him saying things like this, of him not getting it, not understanding the power of language. Writers in particular, you think they'd understand. But a lot of people don't make that connection between "my personal opinion" and "systemic oppression".

Then I got to thinking today about how I don't ever hear lesbians refer to men this way. I can only think of once-- in the pilot of "The L Word," when a woman says, "Ew, I can't believe I used to swallow this stuff," when referring to the semen she's using to try and get pregnant. And that's the one and only instance I can think of. In fact most of the lesbians I know read and write m/m slash fanfic, which celebrates male anatomy, and celebrates queer men. This may be due in part to our own internalized misogyny, or it may not be, but it's interesting to notice.
UPDATE I am wrong about this last part apparently!