My Week With @WeAreDisabled: Thread from 21st August
A couple weeks ago, I took part in my third time hosting the twitter account @WeAreDisabled, which invites guests to host on a rotating basis. Given the ephemeral nature of Twitter, I’ve decided to re-post much of that writing here (as well as some thoughts from previous times I’ve hosted), as well as the Wakelet links to the original tweets. Tweets are reproduced as-is:
I’m also refusing to feel guilty for not posting the last couple of days, by the way. My body and mind need a *lot* of rest, and there are days where pretty much all I can do is drag myself through any non-movable responsibilities and lie on the couch. It is what it is.
My ability to do pretty much anything varies from day to day. Sometimes I can clean my whole apartment in an afternoon, sometimes I literally cannot even read (my mind will just refuse to make sense of the words). I do what I can when I can, and it has to be enough.
Since it’s my first week of class, and my first week back at work, my guess here is I overdid myself earlier in the week, and crashed a bit as a result. The last few days have been a lot of low-focus/energy video games and puppy snuggles. Who knows what tomorrow will look like?
I’ve gotten better at noticing when I’m at my limit over the years, but when I’ve been looking forward to something, I tend to push through and only notice afterwards that I’m having a hard time keeping up with myself.
The biggest tell for me is when things feel like more of an effort than usual. At my best, things happen easily. On normal days, I need to poke at myself a little to get moving. During flares, trying to do anything feels like wading through mud.
I have a bit of a habit of biting off more than I can chew, and then having to withdraw from commitments pretty suddenly (and thanks to my less than stellar memory, sometimes I even end up unintentionally ghosting the people I’ve been working at). It’s hard to break that.
Even before the onset of the pandemic, though, I’d started to work on honoring my capacity and saying no to things. As an organizer, sometimes it’s shame-inducing and lonely to tell people “I’m at capacity, but I wish you well in your effort” but it’s necessary.
Recently, I’ve had more people than before approach me to get involved with work they’re doing. All of it has been so interesting to me, and I wish I could get involved in all of it, but I’d collapse so quickly if I said yes to even half of the asks I receive.
Sometimes, the biggest act of love and care I can offer is to cheer on friends and comrades from the sidelines. It can be isolating to do so, but I’d rather preserve the relationship by being honest about my limits than not come through on something I committed to doing.
Is there an underlying feeling of “I wish I’d been involved in that”? Absolutely. But there’s also a beautiful feeling of “look at my friend soar! I want to add my breath to the breeze that keeps you in the air”
The most helpful knowledge, tho, has been knowing that I don’t have to commit 110% to everything I do. Sometimes it’s enough to show up to a zoom meeting, or hand out flyers for an hour. I don’t have to offer to carry the whole load on my own.
My first year or so at City College, I was in the thick of student organizing. I showed up to every meeting (in an inaccessible building, no less), helped organize demonstrations, helped keep things running day-of. That’s not sustainable for me.
Now, I make myself available when needed (I get asked a lot to jump in as a speaker for events, which I’m always happy to do if time and energy permit), but I can’t and won’t run myself ragged. That refusal is an act of love for myself and for our broader movement.
I’ve even had fellow organizers text me, thanking me for saying no to things they asked me to do, because it has modeled for them that we can honor our capacity and set our boundaries without letting the movement down. Modeling sustainable engagement is a role I love to take on.
I make change in student organizing by living up to my ideals and engaging in practices I’d like to see in the world. I give visual descriptions at events. I fight for captioning. I direct people to local Indigenous groups when acknowledging stewards of the land. I say no.
When I treat these principles not as things I think *should* happen, but as regular practices, it communicates to people that we don’t have to put our movements together based on the current paradigms. We can dream up an accessible world, and then live in it.
Sometimes it’s not a matter of asking “what would we like the world to be?”. Sometimes it’s a matter of acting as if that world already exists.
I would like the world to be accessible, a place of community care, cared for by Indigenous stewards and their accomplices. So I make my world look like that, and when I do, I find that others in my life start to do so as well.
It doesn’t always work out that way, and I don’t want to pretend that it does. I’ve removed myself from countless environments where people could not follow through on commitments to accessibility, or they would reproduce systems of exploitation, or just treat each other poorly.
Sometimes it’s worth the fight to stay involved, sure, but sometimes the most loving thing to do is to disengage and take care of myself or the people impacted. I can work with people to improve our collective environments, but I can’t do the work *for* them.
If I’m the only one asking for alt text, for example, and people don’t follow through with it, it’s not a good use of my time anymore to stay involved. It drains me and keeps me from doing the broader organizing work. I won’t let my only role be reminding people about access.
That’s not always a bad thing, honestly. My refusal to go along with it, even my exit from a space or group, sends a clear message. Sometimes it takes people leaving the group for other organizers to realize they’re ignoring something important.
At the end of the day, it keeps coming back to rest. Things that undermine my ability to rest, or to engage sustainably, or to give my all when I really need to, are things that can’t stay in my life, even if I really want them to stay.
If that means disengaging from a group I otherwise enjoy working with, or taking a few days off from a commitment, or even withdrawing from classes (which I did a *lot* last year), then that’s what I need to do. I can always try again (or something new) another time. Rest first.
Speaking of, my words have very suddenly ran out, so off i go to lie down again. Hopefully tomorrow I’ll be back to talk about how my disabledness informs the work I do with the T-House, but my exhausted ass makes absolutely no promises.
