Disactivism

Some rather stream of conscious thoughts on how a bad cripple like me attends events, badly.

You’re a bad cripple …

… when you get to an event, like for work or a community meeting, and find the room set up in such a way that it seems only the very nimblest of able bodied people could safely move through it…

… if you say something like “hey this lack of a clear safe walk way doesn’t work for me and my shitty joints and my dizziness and my cane. And there’s no way it works for anyone who’s got bigger mobility equipment than I do. So let’s all push these chairs back a little and make a hole…”

An impassable walkway at a work event.
An impassable walkway at a work event, 2013. I watched an agile young man trip and nearly fall while he walked down this narrow path between the chairs and the wall. Probably the many bags and coats strewn on the floor behind the chairs had something to do with it.

You’re a bad cripple …

… when they tell you the break out sessions will be BYO-Chair – “let’s all break out into groups clustered in the corners of this large-ish room, and everyone just drag your chair over to your group…”

… if you say something like “hey BYO-Chair doesn’t work for me because while I very much do need a seat, I can barely get around this room as it is. There’s no way I’m going to be able to safely get around with a chair while you’re all running around carrying chairs. It’s chaos! I will get hurt! Let’s figure out a different way.”

You’re a bad cripple if you take those kinds of steps to “officially complain” in the moment. Believe me, I’ve done it. It feels bad.

I think the BEST most likely outcome is that the organizers will feel bad (for you, about themselves, etc.), but also at least a little vexed. Best case, they try to find a way to accommodate you and your “special needs” in this (unnecessarily) inaccessible space. But it will be the worst kind of accommodation, which is to say it will be post-hoc and chaotic. Minimally it will be a big inconvenience for everyone, including you and maybe including other people with other disabilities who were doing ok until this sudden change of plans (person with limited vision who sat in the front but not right under the lights so she could see and who now has to find a new seat because now we are moving the seats around). Post-hoc accommodations like this mean things will start late. People will feel stifled and pissed off. It won’t feel be the fault of the organizers who failed to consider and plan for things like minimum accessibility for some really common disabilities in advance, it will be your fault. Because you complained.

Ok, so maybe just leave, that would be better right? But this is really important. You really want to be here. Or you really need to be here. Or your ride isn’t coming back until 2 hours from now.

So you stay. And you don’t officially complain.

BUT….

You’re also a bad cripple when you don’t “officially complain”.

When you don’t complain, and you don’t leave, you are choosing to try to self-accommodate. Self accommodating in an inaccessible environment over which you have minimal if any control means you are taking on bigger risks to your ability to participate fully and possibly to your safety.

Minimally, when you are self-accommodating in such an environment, your ability to fully participate in the task(s) at hand is attenuated. You are split between your reason for being there and your need to strategize about what you will sacrifice to be there, to keep being there, to be engaged while you are there, then to get out of there and to get home from there. For example:

The meeting is over. I want to get out of the hot room quickly, it’s been nearly two hours and I feel dizzy, nauseous, and fatigued. But I stay in my seat and let everyone get up and start moving out to avoid bumping and being bumped. I wait as long as I can, but the ringing in my ears starts. This ringing usually precedes the spots in my vision, which precede a loss of consciousness.

My estimate is I have about 5 minutes or so before I go into the faint in a way I can’t reverse. I get up. I am carrying my coat, which makes it harder to use my cane for balance, but if I put it on, I will be hotter and more likely to pass out faster. I didn’t bring my rollator today, because I was taking a cab to get here and my side hurts and I didn’t want to try to get it in and out of the cab. If I had the rollator, I’d have a place to put my coat. If I had the rollator, I’d have a place to sit. If I had my rollator, it would be harder to get through the narrow pathways in and around this room. Pros and cons. I chose no rollator. I am paying for it.

As I make my way out of the room, with the ringing and the spots and the heat and the heavy winter coat, I need to stay standing and continuously moving towards the door. This is to help signal to the stragglers between me and the doors that yes, we are all leaving the room, let’s keep moving. On the shortest path to the door, a Very Important Person has planted herself. She and her audience are in the middle of the closest, wide enough pathway through the maze of abandoned chairs. Do I squeeze past her or do I walk down the length of the room looking for a path which will accommodate me? I have about 4 minutes, I can do it. Wait, no, that way is blocked too.

VIP it is. “Excuse me” I say to the VIP’s shoulder. She doesn’t move. She doesn’t hear me? It’s loud. It’s been loud since the chairs were moved. Many people couldn’t hear in the breakout sessions. My throat is raw from speaking loud enough to be heard. And there are still enough people in the margins of the room that you can’t hear speech that is less than forceful.

“Excuse me” I try again, more forcefully. I don’t want to interject, I don’t want interrupt in a way that signals I want to join their conversation. I can’t stop and stand and talk. I am sweating, which seems normal for a hot room except the nerves that control my ability to sweat in the heat broke two years ago, now I only sweat like this when I’m about 3 minutes away from a faint. I’m about 3 minutes away from a faint. Do I sit? How much time will that buy me? Will they stop talking soon, or move out of the path? There’s no time to double back and take the long way around, and no guarantee that the people blocking that path will be any more inclined to move than the VIP. I move over a little as if to go around the VIP, although I can’t really go around her without hurting myself or stepping on her. Without looking at me, her back stiffens and she takes a little half side-step a little out of the way. Not enough to get through easily, but….

Fuck it. I’m a bad cripple. So I squeeze through and brush all my badness on the VIP. Cane, coat, sweat and all. And I’m out, in the hall. It’s cooler. Not as much as I’d hoped. I find a chair…oh nope. Not that chair, it’s unbelievably low – I’d never be able to get up on my own – and it’s actually sitting on a ramp. How is this safe? Will I slide if I try to sit in it? Will it tip over? So I keep walking and find another chair. I sit. It’s near the door. It’s glorious. The place is closing though, so I can’t sit for long. We have to go.

Photo of a woman laying on medical bed.
Me, at the doctor’s office after hurting myself trying to work in an inaccessible environment. This was only a few months after my gastroparesis started, so I am looking extra thin here.

UPDATE…
It’s April 12, 2018. Pardon the typos. I’m tired. I’ll proof later.
So it’s April 2018. I wrote the above post in January 2017. That’s about 15 months of my trying to re-engage, and with a handful of notable exceptions from a couple of exceptional people, in that time things have not improved access-wise in terms of organizations’ planning and programs.

In February, I finally chose to show a fraction of how outraged I was about repeated failures, exclusions, and invalidations – micro and macro. In February, my outrage was at the failure of my local democratic committee (DTC) to prioritize access at my town’s caucus to select delegates to the state’s annual democratic convention. The caucus is a big deal. Bigger than the regular meetings, parties, or local campaign and town events the DTC usually does. Exclusion at the caucus was a much bigger deal than, say, my having trouble using the little tiny not handicapped stall restrooms at the library where we have our regular meetings (if I am having a lot of pain or dizziness, I don’t go to our regular meetings because I can’t take on the higher risk of injury that dizzy me incurs in a tiny itty bitty stall).

So in January this 2018, over a month before the caucus, I worked with my DTC to try to ensure there was a plan for access at the location they chose, which has known access issues apparently. Despite my work on it, and my follow up (and follow up on the follow up), February came and I – as a person using a mobility device – ended up getting locked out out of the caucus when the DTC leadership didn’t prioritize ensuring that the accessible entrance was unlocked and didn’t prioritize ensuring that the hallways between the entrance and the caucus and between the caucus and the accessible restrooms were unlocked, marked, and passable. I tried, man, and they still screwed up. The day before the caucus, a friend (ally) and her partner had volunteered to help ensure the access plan was followed on caucus day. I found out on caucus day – shortly after finally getting in through the locked doors and down a hall filled with equipment – that my DTC’s leadership had specifically reassigned these volunteers… Away from ensuring access to a task which any of the many other volunteers could have done. This left no volunteers to check on and address access issues.

That day, right in the moment, I complained to the DTC officers & executive board members who I encountered when I got in. They immediately gaslit and invalidated me. There was lots of interrupting, lots of assuming I would be the only disabled person who would attend (and realistically, I probably am the only one since they do no outreach and their prioritization of accessibility is awful). I was already shocked and upset, and verging on outrage. The interrupting, straight up negating facts, telling me how to “be a better cripple” – that made me angry and no one likes an angry woman. No one likes an angry cripple.

The caucus was the biggest in a year of access and inclusion problems, posing difficult choices for me: some events I didn’t even try to go to because I knew there was no amount of accommodating that would help (like the State Convention), some I tried to go to but did a bad job of because my body and the event just didn’t fit. Sometimes I wasn’t able to participate other than to sit pretty passively. Sometimes I paid for even limited participation with an increase in symptoms bad enough that I wasn’t able to take care of myself properly for days after. Sometimes I paid for that with a trip to the ER. Sometimes “self accommodating” at a less than accessible event snowballed and turned into months of lost ground in the constant battle I have with my confused body.

Some of this year’s access failures were from other organizations, but – sadly – most of them were from my DTC. And this disappoints me so much, for so many reasons but the big two being: this is my party; and they keep talking about inclusion. As in “we are the party of inclusion”.

Last night, I got to hear one of the DTC leaders – actually the person who is supposed to be responsible for inclusion in this organization – tell a room full of people that she had no idea there had been access problems at any of events until after the caucus.

Bullshit.

If you’re an organizer, planner, or leader in any group I’ve been involved in for the last 15 months, don’t you dare say you didn’t know about any problems there may have been with accessibility in your events, your digital media, your meetings. I know you would know because I’ve spoken up. I’ve educated. I’ve tried to help. I’ve taken on often unrecognized or devalued labor to help make organizing, campaigning, and activism (more) accessible. And I’m not the only one! Others have written and spoken out about the need for our movement overall to be more inclusive of PWD and what that means in practical terms (other voices on this issue). One of my contacts leads trainings on it (one coming up May 12th in Baltimore!). So many of my friends who are disabled and who are allies are trying in their spheres of influence to, well, influence. But our organizational leaders still say that they don’t know accessibility and inclusion for PWD is a problem in our movement, that don’t know that they needed to be paying attention to it.

A leader in an organization that says they are committed to inclusion is someone who’s supposed to know how to include. They’re supposed to actively go out and learn how to do it, and then apply that knowledge. The knowledge shouldn’t need to be gift wrapped and hand delivered to them, but hey you know what? It was, and I know it was because I tied several of the bows on those fucking packages myself. And they still say they didn’t know.

Leaders’ claim of simple ignorance is neither a valid excuse nor an even remotely believable explanation at this point. Continued deprioritization of access and inclusion for people with disabilities in our movement can only be explained here by something much uglier than simple, innocent ignorance. Something inexcusably crappy and contrary to all of the pretty words and platforms that reference inclusion, social justice, and civil rights.

Minimally, #AccessibleOrganizingMeans Don’t lie. Don’t gaslight. Don’t exclude. Don’t discriminate. Oh yeah and I’m going to say it here because I have kept it to myself for a while now: don’t be assholes when you have failed repeatedly and been called on your failure.

It’s been 15 months for me (not counting disability / health related exclusion I’ve experienced at work and school). It’s been longer for others and it’s been this way this long because we are always told that now isn’t the time. It’s never the time, which means that this time is as good as any.

Pay attention. Get some knowledge. Learn. Do better.

Other voices and writing about the need to include people with disabilities in our resistance

Be the Change: Six Disabled Activists On Why the Resistance Must Be Accessible, by Carrie. February 13, 2017.

Crip the Resistance: Thoughts and Resources for Accessible Protests, by the Geeky Gimp. February 3, 2017. (lots of links at the end of this article)

Accessible Conferences and Conventions: Interview with Elea Chang, by Alice Wong/Disability Visibility Project. July 25, 2017.

#AccessibleOrganizingMeans on Twitter

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