Activism Is Not Accessible: How To Include Disabled and Chronically Ill Folks in Your Movement
Sept 6, 2018 at 11:40am
DIANE MURRAY: Hi. It's really exciting to be here. This is kind of my pet peeve/the axe that I will continue to grind until I die. I'm super excited to be here. So this presentation draws on my own personal experience as a disabled activist. But as it turns out, disability is not a monolith. So I went and did a survey of other disabled activists and asked them what sorts of barriers they encountered, what sort of needs that they had around activism, and just learned a little bit more about what they had experienced.
What I'm gonna talk about today is really just an overview, with the survey results and with stuff that was sort of floating around my head. I produced a document called the Accessible Activism Checklist. And I'm gonna link to that at the end of this presentation so you all can check it out.
I just wanna mention that the quotes that you're gonna see on these slides are anonymous unless I specifically source them, and those are people who chose to remain anonymous. And I'm gonna read or paraphrase everything you see on these slides. So if you can't read along, just know that you're not gonna miss anything.
So to get started, I want you to know that we are everywhere. Sometimes you don’t see us. But disability is one of the few marginalized groups that a person can join at any time, and we intersect with every other group out there. So we're literally everywhere in all of your activisms. We’re mostly pretty angry, especially now. [audience laughter]
And you know, [chuckles] we're very motivated, and we are super powerful. But despite that, we're routinely excluded from activism. And a lot of the time, it's actually just by accident, which can sometimes hurt a lot more than if it were on purpose.
So I'm gonna start by covering some of the barriers that we face. And I think that knowing these and sort of adjusting your behavior—and honestly, just having an awareness—is a really good chunk of that battle. So that’s gonna take up about half the presentation. Once we discuss those, we’re gonna move on to a very brief overview of some specific ways you can make your action more accessible to everyone.
A lot of the barriers to disabled folks in activism are shame and a lack of awareness. Disabled activists are often misunderstood and treated poorly for being unable to get involved in certain “mainstream” activities. They're told, you know, in the case of this respondent, that they're not really activists. And they're also called armchair activists, which is pretty mean, and some of you might be shocked by that. ‘Cause like I said, it’s pretty mean. But honestly, that lazy stereotype is a huge pillar of ableism, and that's something that you wanna be aware of. As an organizer or a participant, one of your jobs is to be inclusive and speak out against this rhetoric and make it very unwelcome in your spaces. So just something to know going forward: be loud about it and be angry.
Above all, please remember that a disabled activist knows their body and needs better than you ever will. I mean, they've been living in that body for several years after all. This activist, Jeanne Tanksley, mentioned that some activists that seem pretty chill still tried to tell her what she could or couldn't do, which is pretty bonkers to me. But you also need to know that our disabilities aren't always visible. And even invisible illnesses like mine can be very debilitating. So don't assume a person can do something just because they look like they can do it.
If all that weren't enough, the inaccessibility of spaces and actions creates a really big barrier to joining. We kinda come into this with a once bitten, twice shy mentality. We deal with inaccessibility everywhere we go. So our tolerances and willingness to fight what is probably gonna be an uphill battle are super low, and folks can and will be put off from your organization or from activism in general if they meet barriers, particularly barriers related to their disability. One respondent said, “They don't think about whether or not we're present, and if I were to guess, I’d think it might be because they don't believe we can contribute anything worthwhile to the cause.” Now, that sounds like a pretty extreme interpretation of not finding a ramp when you go somewhere, but honestly, it's pretty accurate to how a lot of us feel. I mean, we’re already used to being swept under the rug here and there and everywhere, so why not in activism, as well?
The bottom line here is that inaccessibility sends a message. Either we're gonna feel unwelcome, or we’re gonna just see you as an amateur or maybe just both. As Ren K. mentioned in their survey response, they don't really “take an activist seriously if they use ableist language” or don't seem to know or care what they're doing. I mean, this is really how we see you guys when we see a lack of accessibility.
Now, you need to know going into this that you're never, ever gonna get it 100% right. I set up my survey and immediately got feedback from respondents that, oh, “You said this ableist thing here. You messed up here.” I got feedback on my slides that I had used a triggering phrase that I didn't even know about. And that's fine. Get excited when you learn something new. Really fight that initial urge to push back and say, “Oh no. But I'm not ableist. I'm not trying to hurt anyone.” Take your feelings, set them aside, and talk to an able-bodied friend about them later.
So now that we've covered the barriers in the abstract, I wanna look at a case study to see how this sort of thing is playing out in activism today. So today, I wanna talk about the Amazon boycott. Listen. I hate Amazon so much. I hate everything they're doing, and particularly the workers’ rights abuses are very near and dear to me as well. But honestly, the ease of access that it gives me to weird supplements and medical devices people have never heard of. I've got these cool little arch support things. I don’t know where I would find that in a store. I would have to kick around the Internet, find out where it's sold, pay an individual shipping cost or drive all over town to just get my regular meds together, my regular daily wares together. It's not gonna happen when I'm this tired and this busy and sleeping as much as I do. And honestly, there are plenty of other non-disabled folks who need Amazon and Amazon Prime for the exact same reason. I mean, living near the right shops or having a car to get something, having time and having the cash, those are huge factors in one's ability to participate in a boycott. So honestly, it’s an intersectional issue, and it’s not really getting a lot of attention.
Apparently, people were going around calling people who weren't participating in the boycott “scabs,” which is first, inaccurate to the definition of the word scab. [audience laughter] But also it's like they knew better than us what we were capable of. And that prompted this grumpy tweet I have here criticizing people for attacking marginalized folks and not really considering our needs. And that’s the kind of anger that this sort of thing generates. So you know, they thought we were too lazy, or we were choosing to side with a terrible corporation, ‘cause you know, how could we ever care about things like that? And I know that for me, I already had a lot of internalized guilt about that just because it mattered to me, and I couldn't participate. So what we were seeing from people around us really added to that feeling. So we don't need the additional shame. We've already got it. I know I got frustrated and judge-y when I would run across a post about the boycott that even just mentioned it without acknowledging that some people couldn’t participate. And there really weren’t a lot of other ways to get involved. So I was kinda just sitting there, spinning my wheels. So that was no fun.
There was a one-day boycott, and that was fantastic ‘cause I could participate, even though I tried to open up the Amazon app like 10 times that day because I kept needing to refill stuff. Even that was challenging for me. Anyway, I just really wish that people had talked more about the other things we could do to support the cause. Because with just one action, we were a little limited in what we could do.
So all that was a lot and maybe a little depressing. But now that you know the shape of a problem, let's move on to some specific solutions. First, just know that all activist activities are gonna be inaccessible to some people. You really wanna vary your actions and offer alternatives. As one respondent mentioned, “Remember that it's activismS,” plural. Remember also that we can do a lot of behind the scenes work: we can do spreadsheets, we can call people, we can get whatever permits you need. So let folks know you're open to that. I'm sure you want help. You'd love to have an assistant. I bet there's someone who would love to assist you. But you know, having different actions available diversifies your approach, and that's gonna be good for everybody. That’s gonna be so good for your cause. So it's definitely a win-win.
So it's also important to create a culture where people aren't shamed if they choose not to participate or if they're unable to participate. And the best way to do that is just to say, “If you can,” before you suggest an action. It’s just as simple as that. Avoid saying, “Oh, you should do this,” or “You're a terrible human being if you don't do this.” You know, don’t be that person. And it's also really worth putting out a statement in solidarity with people who can’t participate in an action where appropriate, particularly the marches. I know that I was sad and felt really left out when I couldn't go to some of the big marches that happened, I guess, last year. It was so nice when someone took a moment to acknowledge that and to say, “We see you. We're with you.”
Also just recognize how important social shares and awareness are. This is the thing that generally gets called “armchair activism,” but for some people, this is all they can do. And I know for me, who wants to get involved with everything, that's about all I can do for most causes. They're undervalued ‘cause they take just a few clicks. But I gotta tell you, as someone who just posts a lot of articles on Facebook, I’ve had people come out of the woodwork and say, “Hey, I've been reading your Facebook posts, and you've changed my perspective on x, y, z.” And that’s not to toot my own horn. That’s just to sorta drive home, ‘cause I still don’t feel like I’m doing much. But every time I hear that, it drives home just how important this stuff is.
Now, it's important to talk to us in a certain way, to be inclusive of us. But don't forget to direct some of your energy towards talking to all your other participants. Because if you are a very kind person who’s very nice and inclusive, but your actual participant base is just an ableist mess, it's not gonna do much. I mean you need to shut people down if they don't follow an inclusive culture, and you need have your eyes peeled for all that stuff.
So let's hit just a couple specific types of activist action and the ways that you can make them more accessible. First, we've got legislator outreach. And with this, specific instructions and scripts help a lot. Having alternatives like telling people to go through ResistBot so they don’t actually have to call somebody for people who can’t use the phone, etc. That's great, and these things reduce barriers to entry really significantly to non-disabled users as well. So really, you're getting everybody involved more.
As for events, it's really good to have accessibility info front and center in the event description. It tells disabled folks that you're thinking about us, and it actually gives us the tools to decide whether or not we can or should go. I’m gonna talk about sorta what goes in that in the next slide. So put a pin in that, and we’ll move on.
For events, you wanna have somebody live-tweeting if you can and taking questions by tweet or whatever communication method makes sense. But find ways to draw people in if they’re at home. It's also good to make documents and presentations available. What you're seeing here at Affect Conf, just do this. They do a great job, and I love it. So look to them for cues.
Now, onto marches. You want accessibility information, again. But in addition to sort of the regular stuff for events, you're also gonna want a map of your march, and you’re gonna wanna go through and actually figure out what the terrain is like. Are you going over gravel? Are there curb cuts at every crossing? Those things are important. It’s also important to mention any potential risk of counter-protest, violence, or arrest because that kind of stuff is more dangerous for disabled activists than it might be for very privileged folks. And that goes for a lot of other marginalized identities as well. So it’s just a good practice.
And you can also participate from home in a march, contrary to popular belief. The easiest thing is just to have folks register their names, a little blurb about themselves, whatever to add to your numbers. That shows that they’re marching in spirit. But you could also connect folks with a march buddy who is just a volunteer that’s willing to carry a photo or a sign on behalf of that person, talk with them online during the march, send them photos, or even vid chat them in. We’re part of the community, and marches are such an important community-building space. Let us join that. There are ways. We have the technology. We can build it.
So really, just get creative. There are ways to include us that are fun and everyone will enjoy.
So moving on to accessibility considerations, I'm gonna blast through these here. And I just wanna get them on your radar, but you should know they're all more complicated than they look. So be sure to check out the document at the end if you're organizing anything. Save it for your next event. It breaks things down in very excruciating detail.
So first, just know that there are nuances to things like accessible bathrooms and ramps and parking. All of those things, if you just say it's accessible, that gives us so little information. So be sure to describe that space, go into some detail, and that's gonna help us out.
Also important, don't just list the things that are accessible. Please let us know when something is not accessible as well. If there are a couple steps, we need to know that just as much as we need to know that there’s accessible parking. So don't hide that stuff; we need it. Other stuff to put in accessibility info includes travel information, pub trans information, the type of seating available, and you know, whether you're gonna have enough for everybody. If there's a couch available, things like that are a really big deal. Lighting, if you're gonna have those awful, headache-inducing lights, that’s useful to know. Sometimes you’re stuck in a space like that. And temperature: do you have control over the AC or the heat, or are people gonna be in the sweltering heat? We need to know these things!
Have interpreters or live captions. Let people know if that’s gonna be happening. And if you can, announce to everybody a scent-free environment and make a note of it in the accessibility information. But that's something you have to include very front and center, so all participants are on board with it.
It’s good to let people know whether there will be food or drinks, what’s in there, and sort of point out any common allergies or sensitivities. One thing that was suggested through this survey was to describe the space; let people know what they're getting into. ‘Cause for some people, that's very make or break. And don't switch it around very last-minute. Apparently, that has happened to people, and it’s very stressful.
Good to have a "break" or a "rest" room, like we have here. Make sure to note whether you have one of those.
Include a schedule. Let people know exactly what to expect. That also lets them decide, “OK, well, I can go this day. I can only go one day. Which day am I gonna go, basically?” Which I have definitely had to do.
And finally, include your contact information and really encourage people to ask questions and make requests. We are overall used to being met with doubt and criticism. So if we know that you're anticipating our questions, we're gonna feel a lot more comfortable reaching out to you and asking that our needs be met.
So something you should know, that you may not know, is that access needs can and will clash. Sometimes it's as simple as one person being really heat sensitive and the other person being cold sensitive. There's no such thing as a perfect environment for everyone, and that's totally OK. We all get it. It's just a tension that exists in our world. So be ready to deal with and balance all of these things. Talk to the participants who are affected. Have a dialogue, do it respectfully, and then make a judgment based on what everyone's telling you. Do what you can.
Side note: do not make it a jousting match like on this slide. That's more for nerdy visual flair. [audience chuckling]
So finally, just know that we're trusting you when we come to an event, and you really need to respect that trust by putting in the effort. Also remember that it's not our job to make a space accessible. It’s yours. You’re the person doing this. So do it right. And a good way to do that is to involve us in leadership and planning. Make a point of it. It might feel a little token-y, but I tell you what, you will be glad that you did it because we're gonna bring some good perspectives and great ideas for making your space better.
And finally, as I’ve mentioned a few times, just remember that making your activism accessible also reduces barriers to entry to non-disabled folks. So you're just improving your activism in general here, which you can't go wrong with that, right?
So we've come to the end. I want to make sure you know how to access this checklist, ‘cause what I discussed today is absolutely the tip of the iceberg. The checklist is about 23 pages and counting. It’s covered the things that I’ve mentioned, but it also goes into stuff that I haven't been able to get to, like web accessibility, image descriptions, and captions for video. It covers some disability discourse resources and a whole lot more. So please check it out, particularly if you're an organizer, but also if you're just a participant ‘cause you never know when you could pipe up and help somebody who doesn’t feel safe enough to bring it up themselves. So you can download it at dmurring.com/accessibleactivism. And for people who don’t see the slide, dmurring is spelled d-m-u-r-r-i-n-g. This is a living document. So if you look at this, and you're like, oh, there’s this thing missing, or oh my god, I can’t believe she wrote that, let me know. I will be delighted to hear from you and make changes.
And finally, if you're curious about the survey and wanna have a good read of what people had to say, there's a lot more than what I put here. You can also go over to this link to check out the results that people were comfortable putting publicly.
So that's it. Thank you so much for listening and hearing what I had to say. [applause]
You guys are great.
Diane Murray is creating resources for a better, more intersectional world in her Portland, OR home with the company of four cats, two partners, and a sweet baby nibling. Her primary project is Spoonie Living, a resources blog for disabled and chronically ill folks, but her other work can be found at dmurring.com. You can also follow her on Twitter.