Having a type of anxiety dream lately where I'm trying to work, but am too sick to work. Sometimes it's school, or a formal job, or a household job like washing piles of dishes. I keep trying to push myself and it's not successful.

This is something that I did, of course, for maybe 15 years. My brain is still processing it and will be for a long time.

I re-read this lovely essay by my friend Nicasio Andres Reed:
"You Have only Your Trust in Me": Star Trek and the power of mutual belief.

https://uncannymagazine.com/article/you-have-only-your-trust-in-me-star-trek-and-the-power-of-mutual-belief/

How wonderful and empowering it is to believe people about their experiences, and to trust them. I didn't feel believed about my illness when it came to my family. I didn't fully trust people I worked with, even at my better jobs. I still don't get the sense that my doctors understand my experience (again, even the better docs), which is maybe why I have a persistent fantasy about being treated by a Star Fleet doctor.

The people I came to trust, the people that believed me, were my friends. People from fandom, mostly. Other disabled folks, people of color, trans and queer people. Thank you friends, for this.

jesse_the_k in particular demonstrates the "I believe you, what can I do to help?" attitude, and she brings this to access work. This is why we say, Access is first and foremost an attitude. It is this attitude, an open, trusting, non-judgmental attitude, that is so transformative. It is part of the future I want to inhabit.

1. What was the best compliment you ever received?

A friend on twitter recently said they associate me with "radical kindness".

2. What are your five best talents?

Writing; taking care of plants; taking photos; finding good stuff at the thrift store; being patient with animals and people.

3. What do you wish most people knew about you, and why?

I mostly want to be known as as a good person who tries to do the right thing. Taking this question a different way, I would like if people had a greater understanding of anxiety and pain, and how much I struggle.

4. What has been your biggest accomplishment so far, and why does it mean so much to you?

Working on Access at WisCon. I think that in a small way, the Access team helped to change the world. We showed that events can do a great job with accessibility even on a small budget. We influenced other conventions and events. I hope that we helped some people "come out" as disabled, and helped non-disabled people have a greater understanding. It was a team and convention-wide effort, but I was a big part of it, and I'm very proud of that. My mentor was jesse_the_k.

We also created wonderful documentation for all we did, and put those ideas out into the world for other folks to use. You can see some of that documentation at: http://geekfeminism.wikia.com/wiki/Accessibility

5. If you could achieve anything in your life, what would it be?

Overthrow capitalism, obviously.

I have been getting more into gaming lately. It's the best thing to do when I'm especially ill because it distracts me from feeling terrible, and it's just plain fun. Naturally, I think about accessibility in gaming.

I usually play with the sound off because I'm not super into the music on games. When on my PC, I'll listen to my own music while playing. I have arthritis and some dexterity-driven games are not for me. Very stressful games aren't for me either. The games below, I played on PC and purchased through Steam.

Stardew Valley: This is a wonderful, low-key game that involves farming, fishing, mining, and scavenging, and occasionally interacting with villagers. You can play at your own pace and sound is not required. I use my mouse left-handed*, and this game is designed for a Right handed mouse. Although I found a page for switching keyboard commands, I couldn't find a way to switch the mouse buttons. I ended up leaving the mouse button commands alone and still playing Left handed, and switching the keyboard commands to accommodate my right hand being on the keyboard. Fishing is difficult and requires dexterity. However, there's a mod that makes all fishing easy. I downloaded and installed this mod with the help of some internet tutorials. I played this game a lot and it was very relaxing.

Undertale: I gave up on this game mostly because it requires high dexterity. I admit that the art wasn't really my style either.

Never Alone: I gave this a try and it was rather stressful, as it involves a lot of running away from polar bears and such. The game play is also sometimes difficult and requires dexterity, and again I was using left handed mouse which didn't seem natural for the default controls. It's very beautiful and I might try again someday, but my favorite part were the "cultural insights" (Northern indigenous people talking about their cultures) which I could probably just watch on YouTube.

*I am not technically left-handed; but I have pain in my right shoulder so made this switch years ago. These days my left hand is my "good hand".

post is to be continued as I have more games to write about!

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.

I started a list of conventions/conferences with accessibility policies a while back At the Geek Feminism Wiki.

Anyone can edit this wiki. If you know of cons I can add, please suggest them!

I would just like to say that doing vid show warnings / content notes is actually quite simple.
Here are some examples:

Vidukon
Festivids

ao3 dot org

I'll have more to say on this later. Context if you ask for it.

Someone wrote to me looking for a nuts-and-bolts job description for Access work for conventions. They had already looked at WisCon's website and the Access Fandom Wiki at Geek Feminism.

Here is what I wrote back:

Here is the text from our "Big Book of Jobs" for the Access position at WisCon:

Access: works with all departments to ensure that all members and their limitations are accommodated. Includes designating areas in each program room for wheelchair seating, designating chairs reserved for lip readers, coordinating with publications to provide large-print publication material for vision-impaired individuals, maintaining clear pathways in all hallways and program rooms, working with hotel liaisons to limit use of scented products by the hotel, working with con suite/dessert salon to post menu/ingredients for those sensitive or allergic to certain food items, and many other things. The theme is to identify barriers to access and try to lower them. This is an advocacy and educational position.

more info:
If members want an accessible hotel room, advise them to contact the hotel. (A walk through before the convention can be super helpful.)

If members wish to rent a wheelchair or scooter, tell them to contact [Home Health United in Madison]. This company will drop off and pick up mobility aides at the hotel.

The Access Coordinator hires a CART (captionist) provider for the Guest of Honor speeches. In the past we've hired [Ginny D and Sarah F]. Provide this person with a list of common names and phrases that might come up during the speeches. If possible, provide them with the speeches themselves. Coordinate with the stage manager also.

The Access Coordinator coordinates the hiring of ASL interpreters if necessary. We used Purple Scheduling in 2012 (our first year of doing this). Bette Mentz Powell at Wisconsin DHS offered us a grant and helped us coordinate this service. Our interpreter's name was Rae. (In 2013 we expanded to 4 interpreters.)

If members need to store medicines, they can do so in the Green Room fridge. Make sure they are properly labeled and tightly sealed.

Try to make sure all stages are ramped. This has been an ongoing issue for WisCon and other conventions. Work with the hotel/event center to make sure this happens.

Have language on your website about etiquette and attitudes, and about barriers that remain. Announcements at opening ceremonies can also be helpful.

Large print program: Programming takes care of this and I'm not really involved, honestly. I think we make about 6 for our 1000-person convention. Documents are also available digitally.

In the last couple of years we have worked on getting people to use their microphones. This is part of moderator training and we have signs and announcements reminding them to do so.

The "traffic lanes"-- blue tape laid down to divide a hallway into a walking lane and a social lane-- are one of our most popular and visible features.

----
We do a lot at WisCon-- but we've built this up over several years and have some institutional momentum. Also, a lot happens before the convention, which makes things easier for me. The things that happen at the convention are mostly laying down blue tape, hanging up signs, and fielding any last-minute requests or crises that come up. In 2013, I did most of the before-con work and one of the other volunteers (antarcticlust) did most of the at-con work. It's easy to train other volunteers to lay down blue tape, and some committed volunteers have returned to do this for us several years running.

I am personally invested in and enjoy the work, and find it helpful to read blogs, talk to people, and keep learning. We seek feedback from members about how to improve. Members are the best ones to know about how to improve their experience. It's also extremely helpful that the concom is on board with these initiatives.

Leigh Ann Hildebrand: I explain radical hospitality to my classmates by referencing the experience of arriving at a table where all the seats are already taken. Even if you've been invited to the meeting/dinner/event, if you arrive and there is no place to sit, there's a momentary experience of not-belonging. That feeling happens *before* people get a chance to offer a chair or move down or make room, and if there are additional factors like being already marginalized, being the only POC, the only woman, the only PWD -- that first impression can cast a long shadow on the organization. So I tell people, "Always have an empty chair. And if someone arrives to fill it, get ANOTHER empty chair. Make sure that there is always room at your table -- literally and metaphorically -- for the unexpected guest as well as the expected ones."

As you probably know, I am one of a handful of people who run Access at WisCon. I've done this for a few years and learned a ton. Access initiatives at WisCon have largely been very successful and well-regarded.

Karen Moore recently went to WorldCon and was struck by the difference in the lack of accessibility there vs. at WisCon. She wrote us a letter to say so, and gave me permission to quote her letter in my blog. Excerpts from her letter follow:

----begin----

As difficult as it is to juggle 1,000 convention members through the Concourse Hotel’s [WisCon's event site] elevators, I have never seen a wheelchair or scooter user wait for 55 minutes to get onto an elevator at WisCon. I’ve seen that happen multiple times this weekend. It has never been necessary at WisCon to take one elevator to the ground floor, transfer to a second elevator to reach the below-ground floors, traverse a tunnel between two buildings to reach yet a third elevator in order to reach a different floor in the other building to go from one panel to the next. That is a frequent occurrence at WorldCon; in fact, one scooter user we spoke to had concluded that the best she could hope for was to be able to attend a panel in every other timeslot, because the lengthy waits at multiple elevators meant that it took her at least two full hours to navigate from one panel to the next one.

As much of a hurdle it was to move awareness of access into the forefront of people’s consciousness at WisCon, you achieved that very effectively, with announcements, signage, blue tape and multiple other means of communicating to the able-bodied that perhaps taking the stairs would not be a huge burden, and that it would be worthwhile to do so to free up elevator space for those who cannot move between floors in any other way. At WorldCon, there was nary a whisper of such messages, save for a brief blurb titled “Be Kind to your Wheel-Footed Friends” in the Saturday newsletter – and that was AFTER I buttonholed the con chair on Friday afternoon and gave him merry hell about it.

As challenging as it is to finagle a wheelchair/scooter parking spot in some of those oddly-shaped meeting rooms at the Concourse, you still manage to do so in every single one. There is absolutely NO awareness of the need for wheelie/scooter parking spaces at WorldCon. Wheelchair/scooter users are on their own to try to squeeze into space, move chairs around, and try to find a spot to settle.

And even though it is far from ideal for wheelchair/scooter users to have to use that little elevator to navigate the half-flight of stairs to reach the last two panel rooms on the first floor, at least there IS an elevator. There is at least one room in WorldCon’s venue that can ONLY be accessed if one can climb stairs, and they programmed events in that room in every single time slot of the entire con.

And finally, as much pushback as I know Access has gotten from within the committee over its mission, at least none of WisCon’s concom (that I know of) has ever seriously suggested developing an entire track of programming that doesn’t exist, located in a room that doesn’t exist, and then put the damn thing in the pocket program book, the online program and everywhere else. Evidently, someone in the WorldCon committee finds it immensely amusing to think of a convention member with no cartilage left in his hips struggling painfully down multiple escalators, across the tunnel, up more escalators, then searching through a maze of corridors for a program event, only to find a sign that essentially says “Ha, ha, gotcha, Sucker!” The con chair heard from me on that topic as well, by the way. His response? “Well, I’m sorry you don’t see the humor in it.”

-----end-------

WorldCon does have an accessibility department, but it sounds like it is not succeeding. It also sounds like, from this last paragraph, that the ConCom trolled its own membership.

I repost this here not to pick on WorldCon or to cause drama, but rather to say, here is a problem, at this covention and at others. What can we do to work on addressing this problem?

Initiatives at WisCon succeeded because of committed activists and allies. I suspect that each convention will need insiders on their con coms to bring initiatives forward-- that change will have to come from the inside.

At one convention that I won't name at present, I think that criticism around accessibility caused a very strong backlash, and that comparisons to WisCon only made the backlash worse. We were seen as condescending outsiders to their in group. My own perspective is that I have practical experience that I want to share, but, the criticism was not taken as constructive and relationships were damaged.

This is not my intention here. Better access improves things for everyone involved, and it is not as hard to implement as one might think.

Thoughts?

Please sign up for WisCon programming. Sign ups close on March 18!

Also of note: On your "edit bio" page, under "Preferences", you can request disability accommodations if you wish. Click the box and then type in what type of accommodations you request. This can be things such as ramping to the stages, types of seating, or whatever.

If you need an accessible hotel room, please call the hotel.

Send questions or comments to access35@wiscon.info

Something I want to write about is institutionalized access.

To begin with, there is the social model of disability. People are not disabled by diseases or conditions, but by society and how it is set up. People are disabled by a lack of accessible facilities, by the fast pace of life, by refusals for accommodation, by language, by discrimination.

It is somewhat arbitrary what needs society meets for its citizens and what needs it doesn't meet. For example, most of us reading the internet have electricity and water automatically delivered to our homes. With the flick of a switch or the turn of a tap, we have heat, light, power, and water (both hot and cold). However in order to get food, we have to be able to leave our houses and go get it. (Yes, there are some grocery delivery services, but they are expensive and not widely available.) Some information is easy to find, some is hard to find. Some needs are easy to meet, some are next to impossible. It is easy to go to a store for aspirin; it can be very hard to get a prescription for narcotic painkillers. It is easy to buy a bicycle in any city in America, but to buy a wheelchair? Very difficult. It is relatively easy to get plastic surgery on one's nose, but hard to get more controversial surgeries.

So for disabled people, suddenly the world is a lot harder to navigate because it is not designed for people with disabilities. It is designed for the "default" or unmarked human. This is a practical concern but it also sucks because it is discrimination. But this does not have to be so!

We can institutionalize access and incorporate universal design into our lives and events even in small ways. Language, attitudes, blogging practices, choosing accessible venues, listening to people and prioritizing access.

"Well," you might be saying, "can't people just ask for help? I'd be happy to help out anyone who needed it!"

It turns out that asking for help is HARD. Especially if you have to do it over and over and don't feel like you can give anything back. Especially if you have a communication disorder or social anxiety or something else that is disabling. Requesting or requiring people to ask for help is ok sometimes, but it puts the onus on disabled people. It also requires them to self-identify or "out" themselves as disabled, which for some people with invisible disabilities is not necessarily something they want to do.

jesse_the_k wrote a good post about this, Making Space for Wheelchairs and Scooters.

So instead, why not institutionalize access? Make it part of your venue, part of your event, part of your goals and expectations. Set the standards. Make a place for disabled people. It is the right thing to do.

( cut for two images )

I am thinking about cross-posting this to access-fandom, please advise. Comments very much welcome.