Horses are good company -- The Witcher

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.

Lately this song appeals to me as an activist and person:

Am I Wrong (Nico & Vinz -- Official -- You Tube)

The video shows two young black men searching for and eventually finding each other. At the end, they joyfully reunite. Through their journeys, they are each carrying around an old black and white TV that seems to be giving them clues to the other's location. They set these TVs down at the end. They also seek advice from villagers and various people.

Lyrics version:
https://youtu.be/zKX_zR022QY

It can be hard to have different opinions, desires, ways of being than the rest of the culture and especially from your friends. If fandom, and all subcultures, the feeling to go along with the crowd is strong, because you feel like these are "your people". We all seek connection with our friends. But for many of us we can't just go along with the crowd, because we have different beliefs, or we just aren't into what the crowd is doing, even within our own subculture. This can be painful.

We can still connect and love each other even when we disagree. It's hard, it's confusing and there is no script. The signal is fuzzy. But we can do it.

I seen a few people praising this exchange from Arnold's facebook page. The photo is: He changed his user icon (an image of himself as the Terminator) to the rainbow-overlay, which many folks are doing.

A commenter says: "What's wrong with you Arnie? I have to unlike."

Arnold replies: "Hasta la vista."

I get it, people think this is funny. A lot of people probably don't know that Schwarzenegger blocked same-sex marriage in California when he was governor. He did so using his veto power not once, but twice.

This is no secret and not that obscure; for example, George Takei has spoken of Schwarzenegger's homophobic policies as part of his motivation for coming out publicly.

Links for sources (thanks eruthros)
http://www.religioustolerance.org/hom_marl10.htm
http://www.religioustolerance.org/hom_marl8.htm

Pursuant to my post about conferences, I've been thinking about how making events affordable is an access issue.

Making your event affordable attracts people of different classes and backgrounds and locations. It also makes your event more welcoming to disabled folks / PWD. People with disabilities are more likely to be poor for structural, societal reasons. Being disabled can affect a person's earning potential due to discrimination and impairment-related reasons; it also is just plain expensive. For me, for example: There are co-pays on prescriptions and doctor appointments; health services that are not covered by insurance; supplements to buy; expensive shoes that don't hurt my feet; the list goes on and on. For people on special diets, food can be more expensive. A 2008 study found gluten-free products to be much more expensive than their gluten-containing counterparts.

Worry about money is a near-constant source of stress for many people, and some studies link this stress to negative health effects.

If we are planning events, what can we do to help make them more affordable?

Here are some ideas:

Registration and Programming
Sliding scale registrations; day memberships
Member Assistance Fund or Scholarships
ConSuite (hospitality suite)
Free Childcare
Kid, Teen, Youth programming tracks at fan conventions so people can bring their kids
Rebates or refunds for volunteering or presenting

Lodging
List area hostels
Have a room share board on social media

Transportation
Provide cab vouchers and/or mass transit fees so people can get back to their lodging late at night
Have a ride share board
Choose a venue that is on bus or mass transit lines

Food
List local restaurants, grocery stores, and markets. Note if the markets accept food stamps. note if the grocery stores deliver.
Note if they hotel has fridges or microwaves in the rooms or lobby.

Miscellaneous
Look for grants and sponsorships to help off set costs.
Ask for donated items for prizes and gifts.

In June I had the privilege of attending SDS2014, the Society for Disability Studies conference in Minneapolis. SDS did a lot of things right concerning accessibility for people with disabilities. It did not appear that the organizers had put as much thought into economic accessibility. For instance, the venue was an expensive downtown hotel. The nearby restaurants were mostly sit-down restaurants. The convenience shop in the hotel had some bottled beverages and foods at airport prices. Lunch time meetings at the conference felt inaccessible to me, because I didn't know where to grab a sandwich or take out food at a place that I could afford to eat, and get back in time for the session. So I skipped the lunch time sessions; I need to eat according to a set schedule, as I'm sure many folks do. (Note that SDS' discussion of anti-harassment policies occurred during a lunch time session.)

Many academic conferences are similarly expensive, and do not seem to care about being affordable. The registration prices alone can be close to a thousand dollars. This is before hotel, travel, food, and any incidentals for conference participants. Presenters many want to get new clothes or travel gear, for instance. Many people attending academic conferences have their institutions pay for these expenses, or get grants or scholarships to cover them.

Check out two price listings for conferences, just as examples:
An epidemiology conference in Spain
Grace Hopper Women in Computing

I attended SDS as a community member rather than as an academic-- ie, not affiliated with an institution. A friend paid for the reg fee and hotel, and we carpooled there and brought some of our own snacks. SDS does have a sliding scale for their reg fees. Disability studies, unlike many other academic disciplines, values the role of community members and lay people because your lived experience counts. Your embodiment and activism count. You don't necessarily need classes, degrees, and publications to contribute. (I do have some independent-of-the-academy publications.)

My main convention and social event of the year is WisCon, a fan convention, which prioritizes affordability. Many of our affordability issues intersect with other social justice issues, such as disability access and emotional access.

For instance, WisCon provides late-night cab vouchers to get people home from the convention. I imagine the original intent of this service was safety: prevent drunk driving and the like, since alcohol flows fairly free at convention parties. But it also provides an affordable means for people to get home without having to pay for a cab or rely on bus schedules or friends, and means that some people can stay other places than downtown hotels, such as on the outskirts of town at their own or friends' houses or cheaper hotels. It provides independence-- the means to leave the convention when you want (also a safety feature). The cab service we use is a co-op and a union, allowing us to support a local business with shared values. And cabs can be reserved online, which is another accessibility feature.

All of these things intersect. Feeling like your finances are stretched and you can barely afford to be somewhere is stressful and adds to cognitive and emotional load. It means you can't be as present and contribute as fully as you might like. Worrying about affording a meal when you want to go out with friends or colleagues can be embarrassing.

So why are academic conferences so expensive? Not having organized one, or even gone to many, I really have no idea. Looking around on the internet, people say that the fee covers venue, food, and keynote speakers, etc. Probably professional conference organizers plan these things, and take their cut. But conferences can leverage their power as clients to negotiate better deals with hotels and convention centers. They can use university or public venues which are sometimes cheaper. First and foremost, they can simply think about how to lower costs and reduce the economic burden on their participants, instead of assuming everyone who comes is able to blithely afford it.

I do know that charging so much money functions as a gate-keeping mechanism to keep people out. It creates a space where the conference itself is an in-club for people who can afford to be there: a country club effect. The privileged rub elbows and make connections with each other.

This affects the quality of academics. Science, my field of employ, has a myriad of problems with diversity. These things are connected.

I slightly unwisely got into a discussion around this article on Jezebel: Will Everyone Please Eat Gluten Because You are Literally Killing Me Kind Of.

I disagree with the article. Full disclosure: I'm not celiac; I have done dietary restrictions but felt no better when I was on them so gave them up.

Point 1:

You see, when something that is medically necessary for some of us becomes something cool and trendy for the rest of the world, shit gets messed up. Waiters, thinking I am just another ankle-boot wearing Gwyneth wannabe, no longer take me seriously. It is actually harder for me to eat out now than it was a few years ago because a little dusting of flour on a piece of flounder equals a few days in bed for me.

The problem is people who prepare food wrongly. They are the ones responsible for the error and should be blamed. The article writer is placing blame on "fad dieters" and people who are doing it "just because". People can eat what they want and shouldn't have to defend their choices. Food preparers who make mistakes don't get to blame their mistakes on these people or these resulting cultural beliefs that "it's no big deal".

As an aside, this is also the reason I had a rare disagreement with a column by s.e. smith, this one about allergies: Food Allergies, Food Politics, and Taste. S.E. instructs us not to lie about food allergies, for similar reasons that Ms. Strauss does. I say, don't lie about what is in the food you make!! You can lie about your food allergies all you want, in my book.

Reasons people might dissemble about food allergies:
--It's easier than explaining your complex Syndrome
--It's more polite than explaining that said food gives you the runs
--Because someone actually is slightly allergic but wants to eat that chocolate anyway (my old boss)
--Because *!$#* why should people have to defend their food choices!


Point 2:
As I mentioned already, gluten-free is not the answer to your dieting needs.

This assumes that people do GF for dieting (weight loss) reasons, which may be true, I don't know. Most people I know do it for general health-related reasons: they want to feel better. They, like me, have Syndrome (TM) and are trying different things to see if anything works. They might be cutting down on gluten rather than eliminating it, because it's hard to change your whole diet at once. But I honestly don't care if people do this for weight loss reasons, as long as they don't talk about weight loss in front of me at length.

Point 3:
For those of you who swear off gluten not because you want to lose weight, but just because you think it will make you healthier: please stick with the whole wheat. Fiber is one of the most important things you can eat for health's sake and it is extremely difficult (and pricey, see below) to get your hands on when you are strictly gluten-free.

Fruits and vegetables have plenty of fiber!

Point 4:

Also, this life is expensive!

I imagine most people doing it "just because" have the funds for it. And actually, their demand might drive down prices for the celiacs!

Here are some reasons ("just because") people might decide to go GF:
--In solidarity with someone who is ill (I know someone doing this)
--To see if it helps them feel better
--Because they have an autoimmune disease, diabetes, or other illness
--Because sometimes fashions are actually on to some kind of good idea (see blue jeans)
--Because *$*%&^*! why should people have to defend their eating choices!


There is my rant for the evening.

It seems like YouTube is finally taking off as platform of quality amateur content!

This is a parody making fun of Mitt Romney, based on a One Direction song (I've never actually hear the original song). It's pretty gay, for real-- not just slashy.

Lately the media, and people in general, are talking about queerness again because of Chick-Fil-A and whatnot. I posted something earlier, filtered, that I am going to repost publicly because I believe it strongly and I seem to be in the minority in my belief.

---

I keep thinking about something I call the "choice dialog" (a term I may have heard somewhere, or may have made up). Watching Coming Out stories on Bravo, I see people say to homophobic relatives, "It's not a choice." My heinous former co-worker P. asked it of me at lunch one day, "Do you think that being gay is a choice?", to which I had to say, "Of course not, but wouldn't it be nice if it were?" (I was cornered.)

In reality I think things are more complex. They are always more complex. There seems to be some debate here that is controlled by homophobic ultra-Christian right-wingers that say we are choosing a sinful path, and that we need only to alter our choices to come back to the right path. Saying that we are born this way is a way to respond to these folks, and I respect that as one activist tactic. But I am no longer interested in engaging with such people, because to say these things is to start with an assumption that being queer is bad. If you change that assumption, then you change the dialog.

If queer is something good, to be celebrated, or if it is neutral, than you can choose to be queer.

And some people do. Some people's partners transition, and they choose to stay with their partners, or not. Some people are bisexual and they choose to act on it, or not. Some people choose celibacy, or not. Some queer people certainly stay in straight marriages. Some people simply choose to have experiences that don't fit inside labels.

That's the other thing about embracing a choice dialog: it opens up possibilities for people who identify as straight. You can choose to date someone of your same gender, and see how it goes! It doesn't have to mean you are one thing or another.

What I like about classifying things as choices is that it emphasizes autonomy and free will. Sure, neuroscience and biology probably do govern us. But I'd rather think that I have some choice in the matter.

Other excellent posts on this topic:

Fauxgress Watch: Born this way

thingswithwings: Who would choose this?

Frank Bruni: Gay Won't Go Away, Genetic or Not

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!

I went to the protest for an hour in cold and snowy weather; I stood with cabell and laceblade to hear Bradley Whitford and Gabrielle Carteris speak. They talked about being a part of actor's unions and Brad spoke about being from Madison and gave a shout-out to East High School students who walked out of school. Gabrielle said she was paralyzed doing a movie and it was her union who helped her. A physics prof from UW-La Crosse spoke to say that they just voted to unionize in support of this effort.

There were many good signs, I am uploading some photos to Flickr as I write this. There were also some signs in very bad taste, including several calling Walker a "Koch whore". I said to laceblade, "I see no reason to disparage whores! The working girls could benefit from unions."

I also overreacted and yelled at a man telling us to cross the street while we waited for a cop to direct us. Perhaps I'm wound a little tight. "I think it's OK to over-react to mansplainers," laceblade reassured me. I've been fighting on Facebook again too! I need to chillax.