I read a blog post recently by a woman with muscular dystrophy and her experiences going out to eat in restaurants. The author mentioned how wait staff rarely give her a menu, or give her a children’s menu instead of the standard menu. When this happens, she often just looks on with her mom’s menu rather than asking the wait staff to give her her own adult menu. She described that as a “bad activist moment.” While I enjoyed and appreciated the rest of the post, and marveled at the ableism she routinely experiences – wait staff giving her a sippy cup to use?! – the idea of “bad activist moments” particularly stuck with me.
A “bad activist moment,” if I understand it correctly, is a potential opportunity to highlight ableism, educate TABs on the abilities of a PWD, and instruct people on the correct way to interact with a PWD. It could also apply in other contexts – the opportunity to highlight and correct patriarchal or sexist behavior, or racist behavior, or ageist behavior, or any number of other discriminatory and oppressive behaviors. In this context, the person experiencing or observing the problematic behavior is a member of the class negatively affected by such behavior, but it could also, for example, extend to me as a white woman observing behavior that discriminates against Latinos.
I definitely think this idea has value and recognize that the term “bad activist moment” is likely shorthand for “an identifiable moment of opportunity for direct personal activism that I didn’t take” rather than a judgment on whether the person is actually at heart a good or bad activist. But I’m concerned that framing it as a “bad activist moment” suggests that to be a good activist, we must speak up and speak out Every Single Time we observe negative behavior, not just that affecting PWDs, but that affecting or oppressing any minority group or marginalized class. I know that I do not do this and if I did, I would likely suffer significant consequences. I feel I’m already on the edge of being characterized (and thus dismissed) as the girl who has a problem with everything and is hyper-sensitive on these issues and cannot in any way ever take a joke ever – and that’s with me pointing out about 1 in ever 10 problems I see. I worry that if I devoted more time and energy to those issues, I’d be pigeonholed as “politically correct girl” and nothing I said would be taken seriously or considered.
More seriously, though, it is infinitely more risky to raise issues of discrimination and oppression when you are part of the group that is being discriminated against or oppressed. Not only might this require someone who is “passing” to identify and out themselves, but explicitly claiming membership in the targeted group can lead to further discrimination and marginalization. In the racial context, it’s often characterized (and thus dismissed) as someone “playing the race card.” I’m not aware of a similar term in the disability context, but the trope of an “uppity” activist who “thinks they’re entitled to something” extends to all oppressed or marginalized groups. Identifying as such opens a person up to further attacks and discrimination and even physical violence.
Even without these very real risks, I believe that we should all allow ourselves the option to pass up potential opportunities for activism while still considering ourselves to be good and powerful activists. Even if all we did was live our lives as PWDs, that in itself would be an activist act, demonstrating that PWDs have interests, passions, relationships, emotions, LIVES. We would qualify as activists even if we passed up every single potential opportunity to do affirmative activism work.
My ultra-wise co-contributor Chally once told me that taking care of myself was a feminist act. Placing myself at the top of my priorities – even though I am a woman and “should” prioritize caring for others or building a family, even though I am a PWD and thus “have minimal value or worth to society” – is an act of activism. Can I do more than that? Yes, and I do, but I always try to keep in mind that my activism is and should be secondary to my own well being. In part because I’m not going to be able to do any activism at all if I burn out or hurt myself physically or mentally doing activism work. But also because the simple act of prioritizing myself is, in itself, activism.
So take the opportunities for activism that you feel you can. And let the others go by. And remind yourself at the end of each day that you were a good activist that day.
Hear, hear!
This woman does not have to turn every family outing into an activist moment. Every now and then, you just need to enjoy dinner.
just a quick note that i’d appreciate it if comments could focus on how we could or do implement this in our own lives, rather than determining what the actions of others should be. i think it’s up to each one of us individually to determine how much activism is appropriate or desirable for our own individual situations.
Thank you. This is a really useful post and something I’ve been trying to keep in mind since my EpicActivistBurnout(tm) of a couple of years ago.
I’m not arguing over whether self care is activism or not – it’s an interesting concept I hadn’t quite thought of, and I’m not yet sure what I think. But for me activism is primarily collective, so I think of it in a more indirect way – keeping myself in a state that I can be useful.
(It’s harder, of course, when problematic behaviour comes from fellow activists – so what if you can’t sit on bar stools/chalking on the footpath hurts/you find that bloody phil ochs song really ^&*(%*( triggering. Can’t you see we’re organising a revolution here? /bitter side rant).
.-= anthea´s last blog ..When accessibility doesn’t help =-.
Yes. Recently I was at dinner (the food — tom kha soup with fried tofu and tod mahn plah — was lovely) and one of the people at the next table over was in training as a physical therapist. The school had done disability simulation stuff with goggles that represented visual impairments, tape on fingers to represent range of motion/strength impairments, and so on. The person was really! Super! Excited! about the whole thing and convinced that it had been all enlightening and shit.
I had my stick with me that day; my own mobility impairments were readily visible to the sighted. I suppose I could have taken the opportunity for a teachable moment and gone into all the things that are so very, very wrong with disability simulations. (So did y’all take meds that made it hard to think and gave you constipation diarrhea spastic bowel all of the above? Get to live with knowing that your family considers you an unreasonable burden? Did your simulation have an end? Oh it did huh.) But I really just wanted to eat my damn dinner in peace. Since that had already been taken from me I should’ve used more of my very limited time and energy and ability to talk to people I don’t know so I could bash my head against a big wall of We Meant Well/We Were Just Curious? That’s difficult enough when I can do it in text without having to look at people. Face to face it is so not happening.
Whatever kind of activist it makes me it’d better be good enough. This is all there is.
k0: Whatever kind of activist it makes me it’d better be good enough. This is all there is.
and that IS good enough. i trust you to determine when you can engage in that kind of activism and when doing so would be detrimental to you. i trust others to do the same.
anthea: for me activism is primarily collective, so I think of it in a more indirect way – keeping myself in a state that I can be useful.
this is really interesting, because while i also think of activism as a collective activity, when writing and thinking about this post i was imagining only individual opportunities. but i think it applies to participation in or leadership or or otherwise involvement with collective activist activities as well. its an interesting point and one i’m going to mull over some more. thanks for raising it.
I think the best activism is just living. (For any group really – you mean this minority does what I do?)
Anything else is icing on the cake, and you choose the icing.
Kaitlyn,
You said it! Sometimes my best activism is living and being seen still functioning as best I can.
Today I considered myself an activist for parking in the disabled spot at the store and then walking in on my own two feet. “No wheelchair! GASP! What could that woman be doing in the disabled spot with a permanent pass?!” Maybe that got someone thinking.
I actually struggle with this when it comes to blog entries. Every day I get moments where I think “you know, this really is something I should talk/write about” but the majority of the time I don’t because I don’t have the energy after coming home. Lately I’ve been spending all my energy on recovering from work, trips to the store and the likes and I just don’t have the energy to write. The fact that I’ve only managed to finish two entries since I created it only makes matters worse.
It’s difficult to feel like you’re doing something when you don’t even have the energy to do what you’re already doing.
Thank you for this – I think it’s something I need to put into more consideration for this season.
I struggle with this too, particularly the balance between advocating for stuff that directly affects me vs. stuff that is wrong that doesn’t affect me directly.
On the one hand, it’s easy for me to make a case for things that bother me. It’s not very credible to tell someone: “It didn’t bother you when I called that woman a bitch or when I said that depressed people need to snap out of it.” I mean, I guess people do, that’s where “You’re looking at things to get offended at” comes from. But there’s another layer of abstraction when I say something like, “It’s offensive to trans people when you call them trannies or make up hypothetical situations where they’re acting out stereotypes and expect people to treat them like they’re real.”
I try to do a mix of both, because it’s important to me to believe that my social justice issues come from a sense of equality and fairness and not from a desire for personal gain (plus I’m TAB so I have more energy to spread around).
But I do end up being “that PC girl” and it bothers me that even my friends will openly mock my beliefs and certainly don’t take them seriously. But what am I supposed to scale back on? Advocating for others or advocating for myself? Both seem untenable.
And I would say I should just invest in a higher quality of friend, but these are smart, sensitive people I’m talking about who are largely liberal and do care about these issues, when they recognize. They just seem invested in not recognizing more of them. And it’s hard to tell someone whom I care about, who is making an effort, that they’re doing it wrong. (See: My Dad’s jokes or comments that he thinks are inoffensive, but that really aren’t.)
I’ve been thinking about this recently, because I had two situations come up in close proximity where activists told me I take too many of those moments. One said, “well if we deconstruct everything then where will we stand?” But I’ll take someone balking at me holding the second door for them after they held the first door for me as a moment to challenge the underlying assumption. “It’s just a door,” a feminist said, “if I focused on those things it would distract me from my real social justice work.”
I think I’ve concluded that no one can decide what moments anyone else should take. For me, it’s easier in that moment to challenge that person than not. I’m not ruining my fun by pointing out that someone is marginalized by a joke; my fun was already ruined, and I think other people’s fun at marginalized people’s expense should be ruined. I try especially to take those moments when the cost to me is low, because the cost might not be low for other people in the room. I build up a collection of frequently-low-cost responses (like “that’s not okay!”) that register my objection without forcing anyone else to engage with it (as long as they stop doing it). I have also decided that if my friends don’t accept that I will call them on their crap eventually I’d have ended up feeling left out and alienated anyway; that’s not a choice I expect other people to make.
Some people take my speaking up in those moments as critique of their activist credentials (or are just annoyed at having their privilege challenged), but that doesn’t mean I was wrong. Even if what I spoke up about was “less effective” than someone else’s activism, maybe I don’t have time or energy or resources for whatever that person considered “real” social justice work. I do believe these small moments can have an impact, but they also bear a cost. We live in a messed up, oppressive society; no one will ever perfectly challenge every manifestation of that every time.
I can find things in common with people who challenge it, however and however often they challenge it. Accepting that no one else can judge the costs and benefits for me has freed me from both my self-recrimination and the worry that if I do challenge something small people will think I’m humorless or overreacting.
This reminds me of the Terrible Bargain that Melissa McEwan wrote about a few months ago. Basically the choice is “Swallow shit, or speak up and ruin the afternoon.”
Struggling, bad activist here. I have been thinking about this issue lately. I certainly wish I could do more activism than I do. I take more discrimination towards myself based on disability than I used to, and I worry about the consequences fo rother disabled people at times. For example, I am not allowed to go to weekly swimming at my institution unless a staff member accompanies me. This isnot because I can’t swim or my mental state makes it unsafe, but because the people in charge at the swimming pool and the recreational folk at institution are worried because I am blind. Note that the staff/participant ratio is already 2/8, and I have absolutely no need for extra staff to accompany me. The same discrimination is likely keeping me from attending fitness classes given by the same people from my institution who go to swimming with us (officially they say there is a waiting list, but people who signed up after me, are already attending), while I was able to go to a “normal” community fitness center without any extra staff several years ago. I could go on fighting the people who deny me access to these activities, and it is bad for the next blind person institutionalized here if I don’t (and for me, cause lack of day activities is really not good for my mental state). On the other hand, I just really don’t have the energy to fight the large number of people who just swallow this discrimination and the people at swimming pool and institution who initiated it, and I am really not sure what it’d take for me to prove them wrong; I believe that the few things I need assistance with, can be done by the people already attending, but I guess they are just plain unwilling to do that and the only way to prove I can cope without a staff accompanying me 1/1 is to prove I am totally independent. I thinkt his is unreasonable, but I can’t do that, and I don’t know hww to shove the unreasonability into the people’s face, so I just swallow the discrimination and hope the staff can get someone to accompany me on a regular basis. I know this makes me a horrible activist in a way, but I am not sure how to change this really.
I also struggle with the concept of activism by just living. As I said, I live in an institution (psychiatric), so in that sense I personify disability stereotypes. I tried living on my own, going to university, all that, and fell flat on my face, and I so far haven’t been able to find suitable community services. The only way my life disputes stereotypes, is that I have a boyfriend (and I do attend distance education, but at my pace it’d take thirty years to get a degree). I am really not sure at this point how I could be showing disability activism. I used to,w hen I was in an academic magnet high school and got all the “oh wow a blind person can do THAT?!” nonsense from random strangers, and often educated them. But at this point I don’t know.
@astrid – for what it’s worth, i see your “just living” as activism. i think it’s very dangerous to prioritize within the wide range of activities which are activist, and i strongly believe that thinking and writing and very powerful forms of activism. so you are not only “just living,” you’re thinking, you’re interacting with staff and other residents at the institution – all of that is powerful and important activism.
we are not so far away from the days when women like us would be burned as witches or cast out of society or killed or otherwise completely erased. that’s why i value our “just living” so highly, even if the only activist statement we ever make is “i exist.” as kaitlyn said, anything beyond that is icing.
This is an excellent post. The struggle to decide in these moments is difficult, and sometimes it is nice to realize I can’t ALWAYS deal, and I should be okay with that.
This is a really good point. My disability is invisible, and while that comes with the attendant difficulties of fighting for accommodation, it comes with the inestimable privilege of being able to pass. So it’s a question I really struggle with – am I failing as an activist when I don’t disclose? I know I would never expect someone else to, and I try not to hold myself to an unreasonable standard…but still. Am I a self-hating wimp when I keep it to myself? Or am I a snake in their able-bodied grass, lying in wait and occasionally jumping out to challenge their privilege with my assumed TAB credibility? I can’t pretend that’s why I don’t disclose – I don’t disclose if I don’t have to because disclosure pretty much always means unfair treatment – but I feel like I have to rationalize that decision with Good Activism. Which is all kinds of messed up.
Oh Abby Jean, I probably msiunderstood Kaitlyn’s “just living” comment. Within many subdvisions of the disability community, “just living” is not enough, and you have to set an example of disputing stereotypes by being somehow as capable as the nondisabled are. I for one hate that conditional assumption behind disability rights (if we have something to add to civil rights that many other minority groups have failed at until recently, it’s the fact that you shouldn’t have to prove you earn a right that comes naturally to the majority), but I see it a lot of the time and was sort of expecting it behind Kaitlyn’s comment. Sorry for that misinterpretation.
Reading this made me kinda sniffly ,_, thank you … I guess I really needed to hear that. <3
I don’t always have the time or energy to bother trying to educate people about my disability. I have severe fibromyalgia and related conditions, which include fatigue and weakness along with the chronic pain. If I’m hurting too bad and am tired — no, I really don’t have the energy to correct someone who is making a huge gaff.
I educate where I can. I’m outspoken on my LiveJournal and — truthfully, most anywhere I frequent online when the subject comes up, because I have more energy and mental coherence sitting at my computer than I do out and about. If I have the “spoons” to educate, I will. If not… then I don’t.
I don’t think that makes me a “bad activist.” I think that makes me a human being with necessary priorities. 🙂
Astrid – I’m sorry if I hurt or offended you in anyway. That was not my intention and I’m really sorry.
I wrote the blog post that abby jean referenced in her post.
But I’m concerned that framing it as a “bad activist moment” suggests that to be a good activist, we must speak up and speak out Every Single Time we observe negative behavior, not just that affecting PWDs, but that affecting or oppressing any minority group or marginalized class.
That was certainly not my intention. If you read my following post (titled Activist Burnout), I talk about just that. How I’m NOT a bad activist because I don’t speak up every time – that isn’t my job and I don’t have to feel guilty about it. When I said “bad activist moment” I was really using it sort of tongue-in-cheek, like “oh, I’m sure people would think I’m being a BAD ACTIVIST!”
I do feel guilty sometimes when I don’t say anything, and I know I should not. I’m sure a lot of us feel that way – and it’s only natural. But I know I am not a bad activist, and I’m not saying anyone who doesn’t speak up is a bad activist – I am framing that term sarcastically, while also recognizing the “opportunity” I missed. I hope that makes sense.
@ErinH – hi! thanks for dropping in! i really enjoyed your original post and just saw the followup post today. i definitely understood that you were using the term to mark an opportunity that you chose not to pursue than to mean “bad” literally. i was hoping to speak more to the feeling that i often have that i’m “slacking” when i let an opportunity go by, and as you say, i think a lot of us feel that way. i hope the post was clear about addressing the latter feeling than your individual use of the term and if it wasn’t – i apologize!
@abby jean:
Thanks for responding to me. I understand what you were writing about, but I felt it came across as “Her use of ‘bad activist moment’ can be damaging” rather than “This is how I feel about my own activism”, especially because you used my wording – I’m referencing specifically to the part I quoted above. I also think some of the commentors thought that way too, especially reading #1 (which, I actually was offended by) and #4.
@erinh – again, i sincerely apologize that it came across as targeted as you. i intentionally didn’t name you as the author to try to recenter focus on the overall concept of pressuring oneself to do more, but i understand that wasn’t sufficient and i apologize. i was also very frustrated with comment #1 and perhaps i should have effed on the side of deletion. as for comment #4, i’d prefer to let k0 speak for herself.
again, i enjoyed your original post a great deal and am very sorry that using it as a jumping off point led to you feeling attacked.
@abby jean:
Thanks. I appreciate your dialoge with me. I think the whole topic is a lot to think about, and it’s a sensitive issue for a lot of people (*raises hand*) – I’ll probably write more about it in my blog.
Also, I wanted to say this:
Not only might this require someone who is “passing” to identify and out themselves, but explicitly claiming membership in the targeted group can lead to further discrimination and marginalization.
I deal with this a lot. I pass as white, but I am Latina. I have some nurses who will say things about Latin@s, or immigrants, and I usually don’t say anything because I fear their judgement. And, even though I think it’s a privilege to be able to pass, it’s scary when you think you’ll be outed among a group or someone who is racist. So, thanks for bringing that up.
i look forward to reading more about your take on the subject! i agree that it’s a sensitive issue and appreciate you commenting here to discuss it further. i think for people concerned about rights issues, it can be very difficult to prioritize self-care over a potential advocacy opportunity. i struggle with it on a daily basis, it seems. and have a much easier time applying my “whatever advocacy a person does is exactly the right amount” principle to everyone else. 🙂
re passing: i sometimes feel like being able to pass as neurotypical only lets me see just how much people seem to hate neuroatypical folks. i’m not sure whether that’s a benefit – i definitely get that scary/fear feeling. it seems especially difficult for identities where just to claim the identity is a political/activist act – like having been raped, or having had an abortion, or being an immigrant without legal status. not only does it require identifying yourself with an identity they’ve already judged, it requires telling them intensely personal information in order to be an activist. the people being offensive never have to disclose their sexual history or health history or recount the past three generations of their families in order to make their points – it seems especially unjust to require the member of the oppressed group to do so.
My apologies, Erin H. I was trying to get at my own feelings of inadequacy and cowardice and doing a poor job of it. In the process I hurt you. I’m sorry for that.
Thank you for posting about this issue. It’s a struggle to balance self-care with maintaining creditibility with doing what awareness-raising we can, and I guess a lot of us need encouragement sometimes that it is okay to let things slide now and then.