Thinking about institutionalized access

[sasha_feather]

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.



I would like to see less of this:



Description: sign with wheelchair access symbol, with circle and cross through it, indicating that wheelchairs are not allowed. Text reads, "steep path."

And more of this:



Description: Blue sign next to a ramp. Text reads, "Please - Respect the disabled. Do not chain bicycles to ramp."



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

Comments

[rhivolution]

I think crossposting is an excellent idea. This was really useful as a guide.

[were_duck]

I definitely think you should crosspost

[sophygurl]

Great post, and well worth cross-posting!

[sasha_feather]

Thanks! I cross-posted it.

[themeletor]

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.

i'm going to bare myself to possible embarrassment and admit that until i read this it hadn't quite struck me how TRUE and ACTUAL this is. (and i've heard this idea a lot! it just didn't click until just now.) i mean, it seems self-evident, right? but the inculturation (and that's just what it is) is so deep and so pervasive that i really *hadn't* noticed how simple (perhaps deceptively) it is -- "disability" is at least as constructed as anything else. wow.

thank you.

[sasha_feather]

Thank you for this comment!

The inculturation is indeed so deep that it takes a while to teach ourselves a different way of thinking.

[cesy]

It's worth noting that the social model doesn't cover every disability - there are some disabilities that would still be painful even if society catered to them as much as possible. However, it is a very useful tool in thinking about many disabilities.

[eruthros]

Thanks for this post!

Some babbling: One of the things that I'm working hard on is asking for help, or just flat-out saying what I need. I find it really difficult to say "I need to sit down now" instead of "hey, could we sit over there?" -- and in spaces that require me to ask for help, sometimes the second doesn't even come off as asking. For me, it's been useful to think about those difficulties when there are things that a con/community/etc doesn't do by default, like braille programs. If there's a form letter or a routine or specifics (all of which are institutional, and imply that folks with disabilities are expected and wanted), then asking for help becomes a lot easier.

[sasha_feather]

Thanks for saying this! I do this sort of thing all the time, "Can we walk around?" or "Can we go somewhere else?" which I say because I am uncomfortable, but it is not heard that way by others, and why would it be? I have tremendous trouble talking about my pain, party because of acculturation, and I think partly because of my selective mutism. Also because of people's strange reactions when I do talk about it. So to me, "asking for help" is "talking about my pain", which I would really rather not do except in a political or activist context or in a very safe space. Around particularly safe people or in particular environments, asking for help is easier, for sure.

[kaninchen]

And asking for help can be fucking humiliating. Having to ask for help -- with, say, the pain meds it's very clear you take first thing every morning but the nursing staff at psych hospital keep saying 'just a minute' and holy shit but it's two and a half hours of 'just a minute' and then four hours before your next dose and they took your cane away so walking already kind of sucks -- puts your needs at the mercy of someone else's schedule. Policy may well state other than what they do. Policy at hospital said I was supposed to get my fucking meds when I asked for them first thing in the morning but see I have this thing where I do not want to come off looking like someone who is drug-seeking so I don't push. (Also it's hard to push.)

Oh but hey environment | policy design doesn't have to take our needs into consideration. There's always some nice CND person about to help right?

[sasha_feather]

puts your needs at the mercy of someone else's schedule.

That is very powerfully said. Thank you for saying this.

[kaz]

This is an amazing post.

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.

And, you know, there is a huge difference between when you out yourself only to immediately ask something of them as opposed to just outing yourself in normal conversation. HUGE difference, between, say, "I have [invisible disability] so could you please stand up so I can sit down?" and "I have [invisible disability] so I really want to go to the Disability and Fandom panel" or whatever, both on the side of the disabled person asking and on the side of how the CND person is likely to react. I do not see why people are having such trouble with this concept!

[sasha_feather]

Very, very good point!

[antarcticlust]

Thank you for this post! I think you should definitely cross-post.

Asking for help also puts the responsibility of accessibility on the person who needs it, instead of the people otherwise responsible for the space. We have institutions for building maintenance/management - it just makes sense to incorporate accessibility into those institutions! Plus, like we've talked about before, accessibility has lots of collateral benefits!

[nachkomme]

thank you for this. I've been thinking about it a bit too but i can never quite *talk about* it. the other day i was telling people i had on my grumpy pants and it was surrounding the fact that too many people just demand that i be able to talk on the phone. I feel bullied, and i respond to that feeling with anger. I am just figuring some of this out now.
thanks.

[happydork]

Thank you for making this post.

[sasha_feather]

Thanks for commenting!

[gloss]

Thank you so much for this post. I'm going to treasure it.

[sasha_feather]

I'm glad! Thank you!

[jonquil]

". Especially if you have to do it over and over and don't feel like you can give anything back."

Yes, thank you, *yes*. It makes me feel conspicuous and like a burden.

To take it away from my feelings for a moment -- every time I say "I can't do that, I have [my disability]", I run the very real risk that people will give me medical or paramedical advice. No. I don't want to hear about your sister and acupuncture. Really.

[sasha_feather]

But Jonquil! Don't you know that if you got reiki/massage/took supplements/drank aloe juice/TRIED HARDER and spent more money, you'd make all the able-bodied people less uncomfortable?

Becuase SURELY the body can be controlled! Surely!

It is about the myth of control, I think--by being ill without reason, by not getting better, we are undermining their faith in this myth, and they must do something, say something, to re-establish that faith and right their worldview. I'm saying "they" but I have probably done it, back in those days before illness.

Well, that was a ramble... Your point about being conspicuous is a good one.

[green]

Excellent post, thank you.

[sasha_feather]

Thanks!

[beccatoria]

Hi, I'm, um, randomly showing up on your journal - I was linked here via cathexys. This post is very interesting. Your comments about it often being hard to ask are particularly well-made. I was wondering if you had any thoughts on how one would go about institutionalising access for people who suffer from invisible disabilities, particularly issues such as social anxiety problems? Issues like that seem to me to be far harder to provide for in a blanket fashion so that those with similar conditions can make use of appropriate assistance as a default, similar to providing ramps for wheelchairs, etc. It seems that at some point, the ability to "out" oneself would be unavoidable since often the nature of the assistance needed is with regards to interpersonal interactions.

Again, I'm not trying to say that makes it impossible (indeed I very much hope it does not!), I'm simply genuinely curious since you obviously know a lot more about this than me, what the primary ways of institutionalising access for those with invisible disabilities/disabilities that are not directly tied to physical interactions with the world, would be? If you know of any?

[jesse_the_k]

Luckily, there are many ways to improve access for people with social anxiety. The first step is moving away from a medical label and thinking about "what are the functional limitations?"

In addition to anxiety, other impairments (like autism, epilepsy, PTSD) can make it difficult:

• to talk with strangers
• to use short term memory
• to think in a noisy environment
• to listen closely under bright or moving lights

For #1, email is a very wonderful thing (since talking on the phone can be hard due to 1, 2, & 3). Setting out the "common sense"* interaction rules in advance is invaluable, so that people know what's expected of them. Creating guided social events for newcomers creates a space where wallflowers are explicitly welcome.

For #2, copious, super-legible signage unburdens one's working memory.

Some environments are inherently noisy: it's helpful if people know that up front so they can plan their schedule. Depending on the event and the venue, one can make a quiet retreat room where folks can take a calm break. Contrariwise, sometimes amplifying an event makes it easier for us to separate the background noise of an audience from the foreground noise of presenters.

For #4, organizers can reconsider whether the laser lights or disco ball or twinkly holiday ropes are truly required.

* "Common sense" is generally a slippery and inadequate guide. Briefly describing shared values and outline behaviors that are not permitted helps everyone have a good time.

[beccatoria]

Thanks, this is all very interesting and useful information. One of the reasons I asked, in fact, is the ongoing process of learning how to cope with such a disability in my immediate family (PTSD) so this is practically useful to me as well as theoretically interesting.

It probably sounds ridiculous that these aren't things I am able to intuit already; I think it's partly because so much of the anxiety involved is focused around other people, whose behaviour is not knowable, it becomes easy to incorrectly assume there are no other factors. And, indeed, to start feeling a little hopeless about really being able to effectively help improve that for the person in question.

But reading through your list I found myself realising that yes, these are all things I've seen assist in creating a calmer environment already.

I absolutely agree that setting out clear guidelines for any planned event or professional conduct in public spaces is very useful, but I also think that it's probably the area which is most likely to break down simply because it's not as static an issue as putting up signs or choosing (not) to have certain light/sound features. Especially if we're talking about a general attitude to access issues rather than planning around a specific event.

But the idea of looking at the functional limitations beyond the more obvious "social interaction" issues is very useful and you're right, yields immediate, obvious, practical solutions.

Not to say that there aren't good practical solutions to the social interaction issue either - you named some of them, and I know there are others including making an environment welcome for a friend/relative/support worker to also attend if necessary/desired. But I still think it's the most difficult issue to solve because it's the most fluid and dependent on the most changing factors.

Thanks again for taking the time to put together such a thoughtful and clear reply. It really has helped me organise my thoughts on the issue and has given me a new framework in which to consider things.

[sasha_feather]

Hi! Random commenters are always welcome here! (Also I really like your vids.)

What Jesse says is great and I just want to add some of my own thoughts onto it. When I am working access there are some basic things I do: Provide information, provide options, and respect that people know their own needs better than me. I take people at their word and don't demand explanations.

With social anxiety in particular, I know that I personally like to have an "out" of some kind, a way out or a way to say no that won't have bad consequences, so I might offer that to someone. I am thinking right now of kaz's post about fandom challenges. Suggested there is a form letter for withdrawing from challenges to make it easier for anxious people.

Also general strategies for stress reduction can be planned into an institution. Check out WisCon's accessibility statement, in particular the "stress management" portion. Places that are quiet, dark, and/or not crowded can be helpful for social anxiety, among other things, and either creating such a place or simply providing information about where these places are can be very helpful.

Does this help?

[beccatoria]

Yes, thank you, this is very informative and useful - thank you very much for taking the time to write it up for me. (And I'm glad you like the vids!)