sometimes i struggle with this

sometimes i struggle with this:
i know that disabled folks dont look a certain way. i know that folks who are disabled but not perceived by the culture as disabled deal with a whole range of shit that i dont anymore. And i also know that there are things i deal with, as someone who is labeled disabled, who is identifiably disabled by an ableist culture (meaning, because i am identified by people living in an ableist culture as being disabled, because sighted folks can see that i am disabled, and because of that put all their bullshit about disabled folks on me, every day, all day, and i cant escape it for a moment), there are things i deal with that others dont. i want to be able to speak to that without that meaning im invalidating the experiences of folks with invisible [to sighted folks] disabilities. Because thats not what it is. i dont have that kind of power. i just want to be able to speak to my lived experience.

So. If i want to have a photo taken of me with someone/s else who is also identifiably disabled by an ableist culture, i think thats ok. If i want to sit around and chat with other folks who are identifiably disabled by an ableist culture, i think thats ok too. Its more than ok. Its super important to me to share those experiences, to support each other with the particular kinds of shit we get when we are identifiably disabled by an ableist culture, to make art about it, music, words, something i can look to when i feel so completely fucked up from having to deal with it every single day. Because while those experiences are hugely variant, there are some commonalities that i want to chat/complain/cry/create/laugh about with other folks who deal with it. When i have these moments with folks who also deal with this stuff, there's a connection there, an understanding--even in our differences-- theres this common experience of being seen[sic] & and yet not seen[sic] at the same time.

There are so many things i dont yet know how to talk about. But theres something to connecting with other folks who are also seen/not seen[sic] at the same time that means something to me. Not to any other disabled persons exclusion, holy fuck no, but to grow my heart, to figure out where some of the fissures are, to sew it up or let it bleed. i need this.

What do you need to help you heal your heart? And how will/do you find it/create it?

let's get real a minute

Please take the time to read this. It's not long, and will be (if you're doin' it right) mostly painless, i promise. Feel free to repost this.

Please, if you are putting on an event, make sure you indicate the level of accessibility in your promotional materials & callouts. Ensure that the indicated access level is actually the level offered at the venue and not simply what you wish or assume is offered. It gets old fast showing up having been told a space is "fully wheelchair accessible" only to discover it is actually only "semi wheelchair accessible", for example; or to be told an event is "accessible" but without sign language interpretation. Yes, this kind of transparency actually DOES make a difference for real live disabled folks & DOES impact whether & to what extent i'll support your event.
[And here's a novel idea i'd like people to consider: If your venue does have a wheelchair accessible entrance, why not make that the DEFAULT entrance, for everyone? Get people used the the notion that this matters to folks using wheelchairs and scooters; and yes, this matters to more than only those folks you identify as requiring a wheelchair accessible entrance; that more people will actually show up if you provide wheelchair access; that it actually does matter that it is disabled folks who are required to enter through some super secret, rocky, usually poorly lit, back alley entrance (at which there is never a safety or security person positioned, and often no reliable way of alerting staff to your presence). i promise, gimps are chock full of handy ideas!]

If you're unsure what level to identify your events, ask me (i say that just because, well, you know me, and we're talkin' here...) or any number of other folks equipped to provide accurate, up to date, critical information on accessibility. Use the skills and energy of those of us who have put ourselves out there on this stuff! Seriously. i dont do accessibility audits only because i enjoy them (which i totally do); i do them because i think it's critical that folks are aware of the spaces they're using, and not just the status quo able-bodied centric viewpoint, but from that of an actual disabled person (in conversation with several other variously disabled folks) who has to navigate the spaces you choose for your fine-ass events. i also know how important it is to me personally to have the information ahead of time, to not have to call 6 people to find accurate information, to not have to surf around the internet for an hour trying to find the info.
im personally invested in being part of creating a culture where it isnt always just gimps taking responsibility for this stuff, but all of our community. Part of that process is showing each other how its done, what information we need, and getting it out there consistently.

This really is just part of the work of organizing events, like any other part. i'm hopeful that more people will take this to heart, and apply it consistently, just as a matter of course.

i'm always open to conversation and questions about my take on this stuff, sharing resources, energy, time and experience. Let's get it the fuck on, people!

xox

not accessible? then don't invite me.

Not wheelchair accessible? Then please DON'T INVITE ME.

More specifically:
Let's get real, people.
Meaning, if you are putting on an event that you think will be fun and fabulous and you just want all your friends to attend? But that event is being held in a NON accessible location? Then yes, please do not invite me. i am tired of being put in the position -- by ENabled (able-bodied) folks -- of having to choose between solidarity with my friends and/or lovers and/or community members who are unable to access such spaces, and attending because the friends and/or lovers and/or community putting something on are ENabled and just arent thinking about access, and no matter what i'll just keep missing out on the good stuff.Tired of having to choose between dragging my ass up the stairs (which i often cant do) that you seem to think are no big deal, or staying home.

i am so. incredibly. tired.
There are times when i feel like i cant stand even one more incident of ableism in my communities. One more incident and my brain will fucking implode for good. One more incident and my heart will shrink back to its old, fucked up, defeated size; and i will go back to not going out, not being part of fun, educational, inspiring, challenging community events, not volunteering my goddamned gimped ASS off for them. And that is fucked up. All because way too many people cant get their shit together and do some actual, for real solidarity. That is a goddamned shame, and yes, even though im no fan of "shoulds", you absolutely should feel something for participating in it. You should want to change that. You should want this to be different. You just should. Dont you think so? It's just such incredibly basic shit.

And while i know that this will never be easy for anyone, particularly those of you who cannot or will not conceptualize what ableism means on the ground for those of us who live with it every day, i do continue to expect better. i expect more. i expect it in large part because so many people talk a streak about solidarity, but dont seem clear on how that is impacted by ableism. i expect it because i and so many other disabled folks put our gimped asses on the line literally every day for this stuff. We put in time, energy and what little money we have working on accessibility. i've certainly never asked for one single thing in return. Not money, not notoriety, not even your attention for more than it takes to consider something ive written on the topic. i do it because i need it to get done lol, and there are so few people doing it. i do it because my friends/lovers/comrades need it done, and so few people are doing it. i do it because its right. i just wish more people for whom this didnt directly impact would step up and do it too. Because, yknow, they tend to be the ones with the resources to make this stuff actually happen.

Please, think about the ways you have and havent been honestly looking at this stuff, and endeavour to do better. Listen to what disabled folks have to say about it, we are, after all, the actual experts in our own experiences--which is a critical piece so many ENabled folks seem to miss when it comes to disabled folks.

i know perfectly well what im missing out on because so so few are doing anything about ableism and inaccessibility in our communities. But i fear that so many have no idea what yer are missing out on by doing nothing. And that is a damn shame. (im not going to go to that other place, the one that is about how i know that some folks do know what theyre missing out on by excluding gimps, and because of their fucked up notions about disabled folks are quite happy to maintain the status quo...thats for another post.)