Working together on ableism May 30, 2022 11:50 AM   Subscribe

What can we as community members learn from each other and help each other improve about posting and commenting around issues that relate to disabilities/differences?

This Metatalk post is inspired by the discussion in this thread.

I would like to invite us to have as respectful and calm discussion of what we as community members can contribute to helping discussion around disability, disease, differences, and neuroatypicality as positive as possible on the site. I would like to move this discussion away from moderation practices if possible, because I think that as the community we are, we have many strengths and abilities that are not related to moderating that we can bring to bear.

My personal invitation/suggestions:

Bring your questions and concerns! No Dumb Questions in this thread!
Bring your self-care - if this thread will upset you, it's okay, others who are feeling grounded can have the talk today.
Let's not make it personal - no ad hominem remarks; discussing specific comments is not the same as discussing a person's whole self or approach.

Here's some reading from my extensive 5 minutes of Googling just now (just a starting point):

What is ableism?
Disability-inclusive language guidelines (there are a lot of these out there!)

And since this was inspired by a post on the topic of treatment and mental health, here's one on stigma and discrimination in that area. The "STOP" framework in that article can be particularly helpful.

I'll probably say more in the comments but I definitely catch myself being ableist over and over, both in language and in thoughts. I personally never mind "101" discussions because for me, getting back to basics is almost always positive -- it's okay to be a beginner, or to have a moment to go back to beginnings.

Additionally, in case it needs to be said, this is not a post that is coming from my role on the Transition Team - obviously I am the person I am, but this is an invitation for us to work together as people who participate on the site and in no way reflects my views on policy past or future.
posted by warriorqueen to Etiquette/Policy at 11:50 AM (196 comments total) 39 users marked this as a favorite

warriorqueen, I'd like to thank you for this post. For my own self-care, I likely won't be active here, but I really appreciate you starting this discussion and hope it is productive.
posted by epj at 1:08 PM on May 30 [9 favorites]


Oh, thank you for hosting this discussion! I really appreciate the time and space you've taken to frame it here.

One of the things that I think is really important to any discussion of ableism is the concept of conflicting access needs (or sometimes "conflicting accommodations"). That is, sometimes two people in the same place will need things out of a conversation that conflict with one another. While ideally we can allocate resources to create a maximally inclusive environment, sometimes the only way you can solve a set of conflicting access needs is to partition space and time to allow everyone to access a key resource (for Metafilter, that resource is probably best described as conversation) in ways that are partitioned by space and time. For example, one common use case is situations wherein one colleague uses a service dog and another is severely allergic to dogs. The maximally inclusive situation may simply be partitioning the space such that the colleague who uses the dog does not share physical space with the colleague with severe allergies.

When it comes to discussion spaces like Metafilter, one thing that I think is really important to signpost is that we often have a community with wildly divergent needs and abilities when it comes to discussion topics. For example, we have a very wide range of education and experience levels in any given subject matter. We have people whose only real exposure to questions of ableism and to any specific disability is whatever media depictions they've passively absorbed in a room cheek-by-jowl with people who have a lifelong experience with the specific disability under discussion and have developed a number of painful sensitivities to ways in which their broader cultures tend to fuck things up, and we have everything in between.

Note that when I characterize the community this way, I am explicitly assuming that everyone in the room means well, wants to be respectful, and is trying to figure out how to engage constructively... but that not everyone may be capable of predicting and avoiding the pain points for most-closely-affected folks without aids, and not everyone may be capable of breathing through a sudden pain response to be a gracious teacher at all times on zero notice in a peer-focused environment. I can tell you, I have been in both positions, and neither is easy to negotiate on short notice.

I honestly think structural notes at the beginning of a thread cueing people about what the expectations for a specific thread are can be helpful, although I know those can be anxiety-inducing or dismissive for other people. Particularly if the original poster wants to hold a conversation that is centering the experiences of directly-involved folks, it can be really hard to stave off the constant well-meaning but painful comments of folks passing by without listening intensely. For example, in conversations about autism, it's not that I never want to hear from allistic parents of autistic children, but as an autistic adult I really want those parents to be very cognizant about how much space they're taking up and how much their perspectives are foregrounded, centered, and privileged relative to those of autistic adults (and autistic parents of autistic children!) in discussions of autism. Signpost comments can, in my experience, help with that.
posted by sciatrix at 1:26 PM on May 30 [68 favorites]


So just a few things I will draw out from that thread specifically that might help a discussion.

Disclaimer: I am not actually a great expert on this so please take it with that in mind. I can only speak for myself really.

Statement of love of MetaFilter: I appreciated the article being posted very much. I don't think "MetaFilter" (not sure that is a monolith either!) does ableism any worse than most environments I've been in that are not explicitly for that purpose. I'm sometimes frustrated but it's just frustration, not injury or really deep upset.

Disclaimer 2: Sometimes people like me are the worst ableists because we've had to marinate in the requirement to Be As Normal As Possible, Okay? forever. So whatever mistaken thing people might say or ableist remark there might be, I’ve probably been equally culpable. So I speak from that perspective also, because even with a mental difference…I am still a person, and sometimes a jerky one.

3. For me, I’ve learned to improve my discussions around ability and social models of disability by taking it seriously when people have both discussed their experience openly (whether with the thing or with ableism), and I’ve learned when someone’s gone to the effort to point out when my own statements or beliefs or way of doing things was ableist.

Sometimes I feel like there’s a mild culture on MetaFilter that sort of on the one hand, people should do better and be perfect. And on the other hand, I feel like there are people who aim for that (which is a good thing) but at the price of not wanting people to point out they are supporting what I will call a Bad Narrative, whether that's an -ism or a -phobic.

(I have done this myself too, just saying.)

What I would like to see is a space where as a community we do work to be aware that the people we’re talking about are also us, and to centre people’s lived experience. That can include the lived experience of caregivers/friends/medical professionals/etc. but as sciatrix says, that might need some signalling.

But “centering lived experience” can’t mean “in a vacuum” either, at least not if we’re sharing which I think is a great thing.

And so I think when someone like me wades into a discussion about Hearing Voices it is on me to know that I will probably read some things I don’t like, or be basically…not overwhelmed, but whelmed. And that’s okay; if it’s going to really get under my skin I think it’s on me not to read it.

And also at the same time, I think if people want to discuss a topic where there will be people with direct lived experience discussing it as well, they also will have to risk having the things they choose to post about it discussed, or challenged or that people might share how statements come across as ableist to them. And maybe think about it.

Like, if I can handle my discomfort at reading a few posts about how if people are permitted to just listen to their voices (reminder, I both listen to them and am one) they might push Asian people in front of a train,* then I’m going to have to ask you to listen to me when I point out that quite frequently the stories people tell about people who hear voices are stories that support a particular narrative.

And that’s really all I ask, I mean, I am not here to judge anyone.

I hope lots of people will share their thoughts because I feel like I've already kind of said a lot in both threads.

* This post took this long because I was trying to come up with an example of why this is so ableist and it was hard to find one that wasn’t likely to set off an argument.

I guess...it's like, if you knew that out of 100 people you know, 1 of them heard voices (which is statistically not unlikely) but you didn't know which one because they never mentioned it, would you be comfortable in your ability to predict which of the 100 people you know are likely to be raped, commit a violent crime, believe they personally are charged with changing the world for the better, or need anti-psychotics?
posted by warriorqueen at 3:26 PM on May 30 [25 favorites]


IMO this convo has at least two parts. First would be for recognition of the range of any disorder or group of disorders. There is a wide range of lived experiences that are not always represented here.

Leading to my second thought, which is that we need to recognize the “privilege”, if you will, of being able to participate in this discussion at all. Metafilter is a lovely place but to participate, one must first know it exists and then access it via computer, reading, and comprehension and then have the requisite abilities to respond in a timely manner in a way that conveys the desired response.

The voice of those who are not here either because they do not know of this site or that this conversation is on-going or because they literally cannot participate for language/physical/intellectual/psychological reasons—who will represent them? Their family and caregivers have often led the fights for medical, educational and legal rights, and IMO should not be shut out here if the only reason is because they themselves do not have the diagnosis.

And thanks to warriorqueen and sciatrix for starting this discussion.
posted by beaning at 3:42 PM on May 30 [4 favorites]


MetaFilter has had more than one -ism problem over the course of its existence, some of which have settled down and others which have not been confronted directly with any degree of focus. I damn near buttoned over one of the former over a decade ago and wound up taking a very extended break instead. Ableism is a great example of the latter.

My lived experience of the site has been that users often have low awareness of ableist language. This is an area of growth for me as well as I have many habitual language idiosyncrasies. As with most bias problems, though, the issue runs a little deeper than word choice and into things like assumption of context and ability.

As an example I've encountered more than a few Ask answerers -- especially about social matters -- who automatically assume the Asker is NT, is uninfluenced by trauma, and free of mental health impairment. Occasionally those answerers sound astonished that their "obvious" answer wasn't already considered. I have, myself, been guilty of this multiple times in my edgelord past so it sticks out to me when it happens.

Ask represents to me something of the best and most authentic side of us, community-wise. When bias shows up there it's worth examining and reflecting on.
posted by majick at 4:09 PM on May 30 [11 favorites]


who automatically assume the Asker is NT

Hey, could you clarify what NT means? Thanks in advance!
posted by Brandon Blatcher at 4:14 PM on May 30 [3 favorites]


Rather than use my own words (I have Opinions on this matter and it's best I leave them out for the moment) I will quote the Google Suggest answer:
“Neurotypical” is a term that's used to describe individuals with typical neurological development or functioning. It is not specific to any particular group, including autism spectrum disorder. In other words, it's not used to describe individuals who have autism or other developmental differences.
posted by majick at 4:24 PM on May 30


“Their family and caregivers have often led the fights for medical, educational and legal rights, and IMO should not be shut out here if the only reason is because they themselves do not have the diagnosis.”

But too often it's those very people who are the most ableist while also being, by a large margin, the most defensive when called on it and, even worse, take it upon themselves to speak authoritatively on the topic.

My sister and I are both disabled and while I don't think our mother is especially ableist, she's ableist enough that she says some very hurtful things but becomes incredibly defensive when told that she has. I don't actually know if my mother would speak authoritatively about me and my sister's experience publicly, but I can say that if she did, she'd get most of it wrong. She's not a bad person — she's a good person. But her experience as the mother of two disabled children, as well as the sister of a Deaf woman, does not, in fact, make her an expert on disability or ableism.

Honestly, she's willfully ignorant about both my aunt's experience being deaf, and her two children and ex-husband's experiences being chronically ill and disabled . . . because it all makes her very uncomfortable.

I've listened to so many people on the autism spectrum describe extremely ableist parents who have been their chief antagonists that I now have a deep distrust of those particular "advocates" in general. Then I consider how my late maternal grandmother — who was very dear to me — was both clueless and hurtful with regard to my aunt's deafness, and I have too many counterexamples of a supposed sensitivity and authority on disability among family members to retain any faith that close relation or association counts for much. They can actually be particularly pernicious because other people will often take their self-proclaimed authority on the topic very seriously.
posted by Ivan Fyodorovich at 5:00 PM on May 30 [24 favorites]


I'm grateful this thread exists, but I feel, and have always felt that this can't be handled in a similar manner to racism, sexism or homophobia. As a person with a disability (cerebral palsy) who has been traumatized by people who hear voices, I know enough to bow out when an affected individual is using a thread to serve as an outlet for their lived experience, but actively working to build solidarity in the same manner as I might from the position of allyship in those other cases is a bridge too far for me.

Lumping me in with such a person and describing us as subject to the same phenomenon honestly feels insulting to us both, from my perspective, and I think that simply recognizing not everyone belongs in every discussion is likely to be more effective than squeezing me, a person on the autism spectrum, and someone with a rare genetic disorder onto the same airplane seat and shouting "YOU SHOULD ALL FEEL EMPATHY FOR THESE OTHER PEOPLE FOR STRUCTURAL REASONS". Well-meaning, but counterproductive, like the idea that everyone who's ever been victimized should be part of a restorative justice process.
posted by StrikeTheViol at 5:09 PM on May 30 [30 favorites]


I am a disabled and neurodivergent person, and also the long term partner of another disabled and neurodivergent person. One of the very hardest things for me is separating those things out. I *do* have a very rich, deep, and in some ways unique experience to share in my partner role. But I feel very strongly that I need to really watch when and how I jump into threads where that part of my experience is what I'd be bringing to the fore. I very intentionally did not jump in on the voices thread because my experience is not what needed to be centered there, but it was hard to sit on my hands and not comment. I still think it was the right choice and I'd really encourage other people in my situation to say least take a deep breath and think about whether "I know a guy who", even when it's "I've spent twenty years supporting and loving a guy who", is a story that needs to be told in a thread already hopping with "I am a person who" stories. Even if in a very closely related discussion we ourselves would be "the person who."

So that's one thought. The other is just that I want to put my own situation out there to note that it's not always as simple as "people with lived disability experience vs people with close secondhand experience." A lot of us are both, and trying to navigate that, and not always doing so gracefully. I could do better at being clear when I'm speaking from which lived experience, and will work on that.

For whatever it's worth, persistent ableism on the site is one thing I flagged as an ongoing problem in the steering committee survey. I hope I'm not the only one, and that enough people will weigh in on that here or there that it becomes something site leadership takes more seriously and becomes more educated about in the future.
posted by Stacey at 5:48 PM on May 30 [20 favorites]


“Lumping me in with such a person and describing us as subject to the same phenomenon honestly feels insulting to us both...”

A key aspect of ableist bigotry is essentializing a medicalized condition and viscerally "othering" people with it.
posted by Ivan Fyodorovich at 6:47 PM on May 30 [5 favorites]


The covid ableism around here in particular is really hard to stomach - so much advice in ask completely ignores the fact that immunocompromised people exist and need to stay safe and isolated. This strikes me as something that can be moderated, but the few comments I've flagged (one where an answerer told someone to just go see a movie in a theater because they deemed it "safe" - despite the prolonged indoor exposure with strangers - comes to mind) have stayed up. No one really cares about us anymore, but an online community that doesn't even acknowledge that some people are now forced to live indoors, in isolation, with only virtual interactions... it is a bit surprising to encounter here, in nearly every thread about covid.
posted by twelve cent archie at 7:26 PM on May 30 [34 favorites]


The voice of those who are not here either because they do not know of this site or that this conversation is on-going or because they literally cannot participate for language/physical/intellectual/psychological reasons—who will represent them? Their family and caregivers have often led the fights for medical, educational and legal rights, and IMO should not be shut out here if the only reason is because they themselves do not have the diagnosis.

So I'm going to nudge this very gently: this is especially loaded on the topic of autism in part because one of the ways that families and caregivers often respond to autistic perspectives is by attempting to invalidate the autism of anyone who contradicts their perspectives and opinions. If I am capable of sitting here in this conversation speaking for myself, why: I must not be really autistic, not like those poor children who can't advocate for themselves, or who can't live alone, or who will never hold a job or get married or have friends--

Allistic* parents of autistic children tend to catastrophize about their children, is the thing. And they tend to try to cast autistic adults speaking to them as perpetual children, as if we never grow up, and act as if autistic adults who contradict them are not capable of providing insights or viewpoints that are relevant to their children's experiences, especially if our points make those parents uncomfortable. Not all parents, to be sure, but an awful lot of them. So this is partly what I mean about sore spots: there are a lot of autistic people who would see this comment, flinch, and go "Ah, you're signaling some very specific things about whose perspective you find valuable there" and proceed to either write you off or react quite angrily to protect their ability to speak in the space. This is a broader issue with many kinds of disabilities, but it is especially close to the surface in communities of autistic adults precisely because adult autistic self-advocacy has been so consistently been spoken over by allistic parent advocacy for children. This soreness is why "Nothing About Us Without Us" is something of a touchstone as slogans go.

I don't think you meant to press into a giant painful wound of thirty years of history and activism here by suggesting that the perspectives of caregivers might provide insight into the lives of disabled people who just can't be present in the conversation, is the thing? But... in some ways, centering caregivers makes it much harder to be visibly disabled in a conversation, in part again because of that history of caregivers invalidating the disability experiences of people who contradict them. Caregivers have different concerns about disability treatment and management than disabled people do. They have different areas of expertise. And they have an incredibly different perspective.

Having to lay this out repeatedly is a huge part of what makes having conversations about disability generally and my own lived experiences about neurodivergence specifically difficult and painful for me on this site. (That said, I agree with winterqueen that Metafilter is not in any way particularly unique or standout in any direction on this topic relative to the wider culture in which I live.) That doesn't mean that I don't think that allistic* caregivers don't have perspectives that can be important... if they are aware of this history, and these tendencies, and they know how to signal that they are not interested in shoving autistic adults out of conversations about autism again. It is, frankly, easier to signpost that at the beginning than wait for it to inevitably show up and then have to figure out how to patiently react, and easier yet to just... focus on issues that aren't so close to my own home community.

*non-autistic, used here in rather than "neurotypical" or NT because it is possible to be neuro-atypical and not be autistic
posted by sciatrix at 7:30 PM on May 30 [34 favorites]


rather than "neurotypical" or NT because it is possible to be neuro-atypical and not be autistic

Thank you for addressing this point directly; I feel seen. I will now step aside for a while in hopes of following a rich conversation.
posted by majick at 7:37 PM on May 30 [7 favorites]


I'm grateful this thread exists, but I feel, and have always felt that this can't be handled in a similar manner to racism, sexism or homophobia. As a person with a disability (cerebral palsy) who has been traumatized by people who hear voices, I know enough to bow out when an affected individual is using a thread to serve as an outlet for their lived experience, but actively working to build solidarity in the same manner as I might from the position of allyship in those other cases is a bridge too far for me.

This is a hard one because like homophobia, ableism references a constellation of many loosely related little communities with their own localized experiences, not all of which always interact clearly with one another, and some of which experience one another as active threats. I am asexual, right? My lived experience does not closely align, on the face of it, with the lived experiences of some of my queer colleagues. For me (and for all of us in the LGBTQ+ community, in fact) allyship for people whose experiences don't directly mirror our own must be an active process, not a passive one. It involves a lot of listening and thinking about ways in which I can see my experiences reflected, sometimes obliquely, and thinking about ways in which coalitions are stronger with more groups. It also means thinking about the ways in which our marginalizations sometimes bait and switch us to think that some of these groups are personifications of our own hurts. My asexuality can sometimes invoke a trauma reaction from gay people who have been told all their lives that my reality is what homophobic messaging wants for them, for example, and navigating around that for both of us is part of the work that allyship entails.

Another of the things I see that degrades coalitions in the queer community is respectability politics, right? When you get one group in the community that another groups feels might make them look less palatable to the mainstream, and there's an impulse to distance yourselves from them so you don't all get ejected together, because embracing them might lead to loss of progress for yourselves. And that's definitely a thing in disability organizing just as it is in queer organizing. When, for example, Deaf folks have been barred from accessing education and told it's because they're just like autistic people or intellectually disabled people who couldn't benefit from those things anyway, it can be very frightening to suddenly have an increasingly vocal autistic community looking up to the Deaf community as a potential model and thanking it for the strides it has made.

So I guess: I am intensely sympathetic to the problem of having been traumatized by something that looks like a group of people you feel like you are being pressured to engage in allyship with. I suppose here I'm thinking about two different questions I have about your position: first, do you think that coalitions are politically less viable than organizing purely as individual communities within disability? and second, you're describing a very viscerally emotional reaction to lumping these different smaller experiences together under a big conceptual "disability"; how do those feelings interact with and inform your position? Like... okay, I'll be frank, I think trauma in and of itself is a disability, right? Is this a position that is personal to you (I can't extend allyship here in this direction because it hurts me to do so, but other people doing it is fine) or is it a more philosophical position that's being informed by your experiences?
posted by sciatrix at 7:53 PM on May 30 [16 favorites]


but the few comments I've flagged (one where an answerer told someone to just go see a movie in a theater because they deemed it "safe" - despite the prolonged indoor exposure with strangers - comes to mind) have stayed up.

That comment did get taken down. I think it took a minute, but it's definitely gone. I'm glad.

There was also an AskMe this week about an Asker's life being "over" due to the frequent infrequencies of their out-and-about social life, with a lengthy lament about not wanting to be a shut-in, and how not having a social life is the equivalent of just giving up on life in general.

As with the movie theater commenter, I truly believe that this particular person intended zero harm whatsoever. Both have been really helpful and insightful contributors here in our community. I think maybe that they had just simply never fathomed that here at Metafilter, we have lots of community members who are currently shut in and isolating at home and making a life for ourselves -- and have been for literally years due to immunocompromise or other disabilities that preceded the pandemic. And there's this implicit assumption that a disabled life -- my life -- is a life that's less than. Less than what's normal, less than what's acceptable, less than what's theirs.

And really, folks talking about their outside lives and trips and parties, that's all totally fine with me. I'm happy and excited that most of us can return to a level of something resembling normal, at least from the vantage of the US, where I live. It's just the offhand, thoughtless let-them-eat-brioche kinds of comments that really seem to hit hard and hit ugly. It's hard not to take those personally.
posted by mochapickle at 8:09 PM on May 30 [37 favorites]


the few comments I've flagged (one where an answerer told someone to just go see a movie in a theater because they deemed it "safe" - despite the prolonged indoor exposure with strangers - comes to mind) have stayed up.

I agree those kind of cavalier comments can be incredibly frustrating to see over and over again. In the most recent thread I saw, two comments saying "Go to the movie in the theater" were deleted but the OPs "This is why I can't do that" was left. But it did take a while and not knowing if something will be deleted (and sometimes seeing things not deleted, as you state) is a problem. And the OP shouldn't have to wonder, either. Sometimes we coach people how to be really clear about what they're saying in terms of who they're saying it for and letting people know if they are making assumptions that go into their answer. That's not always enough but it's a start and something I try to do in my answers here, not just presume that someone is an asker who has the same general makeup as I do.

I've mentioned before that my partner is a caregiver to his adult son who has a serious mental illness. I've worked on talking about our lived experience without either overgeneralizing or trying to posit what his son is thinking or feeling because I don't know. My challenge is to not see threads on other people living with serious mental illnesses (or being a caregiver) as a chance to talk about some of the really difficult times we've had, or the really scary times we've been through. Because as much as it can help me sometimes, to talk about those things in a community where I feel safe, and comfortable, my talking about those bad times isn't always setting the right tone for those threads to evolve in a positive way and can make others feel less safe.

One of the hardest things for me in the larger world is trying to find a balance between doing what I feel is necessary for my own anxiety load and specific neurodivergences, and trying to help work with other people who are managing their own specific issues along similar but not identical lines.
posted by jessamyn (staff) at 8:21 PM on May 30 [20 favorites]


So I guess: I am intensely sympathetic to the problem of having been traumatized by something that looks like a group of people you feel like you are being pressured to engage in allyship with. I suppose here I'm thinking about two different questions I have about your position: first, do you think that coalitions are politically less viable than organizing purely as individual communities within disability? and second, you're describing a very viscerally emotional reaction to lumping these different smaller experiences together under a big conceptual "disability"; how do those feelings interact with and inform your position? Like... okay, I'll be frank, I think trauma in and of itself is a disability, right? Is this a position that is personal to you (I can't extend allyship here in this direction because it hurts me to do so, but other people doing it is fine) or is it a more philosophical position that's being informed by your experiences?

I don't presume to speak for anyone else, but I can say that it's both personal and philosophical for me. It feels to me that other equality-focused movements have come to rest at what seem to be understandable (if not contested) points regarding just how large tents should be, while the state of "disability-as-movement" is in flux in this regard. Just as basically every queer person I've ever met would have issues with cishet otherkin, for example, taking center stage to argue that LGBTQIA+ spaces also belong to them, I draw the line here. I don't mind if the ultimate community consensus is more open, but I wanted to gently push back on that being an ideal, especially given that no one is forced to post in a thread, and painful discussions don't always HAVE to happen here, with embracement and acceptance of everyone equally at all times not necessarily the most helpful outcome for this community. To use another analogy, I'm glad we had the BIPOC threads, generally I think it's best if people just post as they like and "read the room", but I think both are better than trying to create norms which would enable Rachel Dolezal to participate here in threads on the black experience, if that makes sense.
posted by StrikeTheViol at 9:30 PM on May 30


I have to admit that I don't really understand the Rachel Dolezal reference with regard to this conversation, but I will say that bitter experience has taught me that analogies are almost always a bad way to go when trying to describe something ... Here on Mefi, they cause relentless, endless derails as people debate how the "analogy does / doesn't hold up," what would be a better analogy, why the analogy is / isn't offensive, etc. It becomes all about the analogy, and certainly here I can see people being like, "wait, who is the Rachel Dolezal in this analogy?" Hopefully, this can be addressed with a bit more explanation and not derail the good discussion that is ongoing at the moment!
posted by taz (staff) at 11:20 PM on May 30 [10 favorites]


>To use another analogy, I'm glad we had the BIPOC threads, generally I think it's best if people just post as they like and "read the room", but I think both are better than trying to create norms which would enable Rachel Dolezal to participate here in threads on the black experience, if that makes sense.

Rachel Dolezal is a woman born to standard white/European American parents. As an adult she said many things that weren't true/lied a lot, but is primarily known for claiming to be a black woman and speaking authoritatively and at length on that, to the degree that she taught number of college courses about black people in America and was president of her city's NAACP chapter.

If I understand StrikeTheViol's analogy correctly, they would prefer people generally all comment together in the same conversation, while trying to be sensitive to others who are also participating. However, they also recognize the need for some protected/separate conversations, because there are malicious and fraudulent voices that chime in. (
posted by cult_url_bias at 12:34 AM on May 31 [2 favorites]


IDK, I see this kind of stuff then I'm reminded that people who take non-ableism political shit too seriously or happen to see it in the "wrong" (meaning, socially considered "wrong") context (a classic autistic behavior) are apparently ok to be labeled things like "vengescolds" and told basically at length that they're ruining the website.

(That combined with the fact that one of the topics people are being too serious about and "vengescold"-ing about tends to be racism is just icing on the fucked-up cake).

IDK, I feel like understanding ableism requires an understanding of the way it intersects with other privileges, including white privilege, and that this is a massive blind spot for at least some of the people here who are currently holding forth on ableism, and it would be healing for there to be some (read: a lot) of acknowledgement there.
posted by Rock 'em Sock 'em at 5:13 AM on May 31 [6 favorites]


StrikeTheViol, I'm sorry that happened to you. :(

The Rachel Dolezal analogy will be familiar to most multiples (and StrikeTheViol clearly is speaking from experience). To sum up: A lot of people think people who identify as multiple are making it all up. (This actually directly relates to the Hearing Voices movement, even though its a much broader tent than multiples.)

I think there is a very good point as well being made which is that (at its most general) disability or ableism is like suuuper broad. I would be incredibly uncomfortable linking the kind of stigma I experience to a lack of accessibility, for example. To sciatrix's point that's important to think about in conversation.

For me, I don't see MetaFilter as the cure for creating an in-identity and an out-identity group. Not in general and not thread-by-thread. We're a discussion forum, and a group of people who like to read, learn, and discuss. I don't think there will be any way to say who is in a group and who is out of a group other than taking people at their word, and trying to create a culture that is respectful.

So if that's part of a definition of "safe space" -- people from a group only being affirmed by people with direct experience in that group -- I don't know if we can aim for that. Can we?

But *I* think MetaFilter is very good at helping each other identify bias and prejudice and outdated/negating language and assumptions and thoughtless interactions.

So maybe that's one collective form of addressing -isms that we can share?
posted by warriorqueen at 5:14 AM on May 31 [9 favorites]


I'll probably say more in the comments but I definitely catch myself being ableist over and over, both in language and in thoughts. I personally never mind "101" discussions because for me, getting back to basics is almost always positive -- it's okay to be a beginner, or to have a moment to go back to beginnings

I think it’s important to note here that 101 discussions almost always end up having value because of the emotional labor of disabled people willing to help educate beginners for the Nth time.

This is normal and not inherently bad or anything, but it’s important to me to encourage folks who feel like they need repeated refreshers on the basics to consider seeking that out on google on your own rather than repeatedly externalizing the labor to satisfy that need onto fellow community members.
posted by lazaruslong at 5:31 AM on May 31 [16 favorites]


For sure, lazaruslong.

And Rock 'em Sock 'em, it's a good point - that discussion came to my mind as well.
posted by warriorqueen at 5:33 AM on May 31


I'm somewhere between impressed and dismayed at the response to a series of gatekeeping, exclusionary comments which uses words like "insulting", evocative language like "squeezing onto the same airline seat", and then uses the example of Rachel Dolezal (!) to validate what amounts to a those people aren't like me, yuck attitude.

"Impressed" because a few answering comments have been extraordinarily carefully worded, bending over backward to gently provide multiple opportunities for the commenter to reconsider with more generosity.

"Dismayed" because that was some outrageous shit that should be self-evidently beyond the pale.

Maybe I'm angry because having a "rare genetic disorder" was used as a badge of actual legitimacy because, as a person also with a "rare genetic disorder", I'm displeased to have this being used an example of who should be allowed in the tent of those who regularly deal with the harms of ableism but shouldn't have to.
posted by Ivan Fyodorovich at 6:39 AM on May 31 [8 favorites]


AskMe comments along the lines of "just pick up the phone" or "this needs to be done face-to-face" (i.e. don't communicate with a text/email/note) can sometimes be ableist or dismissive in a way that I suspect commenters don't realize or understand.

Language processing difficulties, some kinds of neurodivergence, hearing difficulties, anxiety and other things can make it harder for some people to communicate as effectively in those ways, both in terms of taking in information and in terms of expressing themselves accurately. Of course in interpersonal situations there are a lot of factors to take into account when choosing a mode of communication, but I think it would be helpful for commenters/advice-givers not to silently and automatically prioritize the comfort of the (presumed-)neurotypical/not disabled person whom the question-asking MeFite needs to communicate with.
posted by needs more cowbell at 7:11 AM on May 31 [10 favorites]


Okay, I haven't seen anyone say it specifically, so I will:

The Hearing Voices Movement story is about how some people, as part of a carefully managed therapeutic regime, choose to reject some aspects of the pharmaceuticalization of psychiatry for their own good. And a bunch of people (including people who I genuinely would have thought were better than this) decided that what really needed to happen in that thread was sharing tragedy porn stories of people they knew who they're pretty sure went off their meds at some point and something bad happened. Some of them were nuked; some remain in that thread.

That was gross as hell.
posted by Etrigan at 7:30 AM on May 31 [31 favorites]


Ableism is such a broad issue that coming at it from a lot of different directions is inevitable. Some of those directions are going to seem (and maybe be) contradictory, and that's going to bother some people. I would encourage folks who are bothered by contradictory approaches to be willing to live in that discomfort and not immediately lash out against it.

I've learned so much about so many things on MetaFilter. I'm grateful for all the 101-ing I've received here and I try to pay it back by taking on 101-ing myself whenever I can, so that people who shouldn't have to be spending that emotional labor don't have to do it all.

Modern medicine has provided a lot of miracles for a lot of people, but it directly harms a lot of people too. For those of us raised to see doctors as "the good guys" it can be very shocking to see the other side of things. It can be hard to create a space that validates both views that an organization like NAMI, for instance, has saved some people's lives but also ruined some people's lives.
posted by rikschell at 7:43 AM on May 31 [18 favorites]


Thank you (warriorqueen, AND all the commenters) for this thread.

I definitely catch myself being ableist over and over, both in language and in thoughts.

From another recent MeTa:

I don't think the mods or community don't care, but we may be blind and/or ignorant. Hopefully we with your help we can start getting this problem rectified.

Using blind as a synonym for ignorant / unaware / uninformed on an issue is ableist language, for a start.



That has engaged my mind since I read it. It really brings home the point of how easy it is to be ableist and not even realize. I like to think of myself as pretty conscious of other's. As with everything, I can always be better.

This is an important discussion to have. Thanks again, all for commenting.
posted by a non mouse, a cow herd at 9:27 AM on May 31 [8 favorites]


I'm sorry if hurt the feelings of Ivan Fyodorovich, well-meaning people who identify as multiples, or anyone else who holds this topic dear. My first thought was how to express my feelings without a reasonable expectation of a content warning, and that's what I came up with.

I am reacting to the sentiment that "Group of people x who have personally hurt you, and you yourself, are both the same, because you're subject to the same ableist context. Your interpretation of encounters that viscerally scared you shitless is solely on you, probably the result of internalized ableism, and very disrespectful to the people whom I have decided you aren't any different from. All experiences are equally valid, harms deriving from that are systemic, and that's the consensus we're trying to build here."

If that's the direction the majority of people with a stake in the matter would like to go in, that's actually fine with me! I DEFINITELY wasn't goiing to shit in the thread where people were sharing deeply personal experiences alien to me, and it's not my intention to argue that people with these differences can't or shouldn't be here. I simply wanted to share my experience and cast a vote for "having different people in different threads and NOT having a consensus doesn't necessarily mean we've failed as a community."
posted by StrikeTheViol at 9:41 AM on May 31 [8 favorites]


First I’d like to state that I absolutely agree that those with lived experiences should speak first and with priority in conversations about ableism. I regret and apologize that this was not more clear on that in my original comment. I have complete respect for the lived experiences offered in this and other posts on disabilities/chronic diseases. And I agree that many activism efforts have both good and bad sides, and that these often are difficult to assess, especially for their impact on specific individuals.

I’m not going to out myself/unknowing family members as to what our specifics are but suffice it to say that our experience is with the types of disorders that frequently lead to childhood death even with the best of ever-improving care. Think Trisomy 13, Trisomy 18, and severe childhood neurological degenerative conditions.

I mourn that individuals with these severe conditions are not here to speak for themselves because the vast majority are dead by age 18 yrs. And the affected adults are not able to routinely communicate with the written word's complexity, fluency and nuance that MeFi expects; I myself am failing in this.

Again, the range of disability is wide, it's a privilege to be here, and coalition communities may overlap without merging. I will read to learn more about the MeFi communities and not comment further as this discussion continues.
posted by beaning at 9:54 AM on May 31 [5 favorites]


“I'm sorry if hurt the feelings of Ivan Fyodorovich, well-meaning people who identify as multiples, or anyone else who holds this topic dear.”

I do appreciate your apology and it makes it much easier for me to interpret your comment very generously, as some others have.

Most of us have experienced trauma, and I think many people here have probably negatively generalized about a whole class of people as a result of being victimized by a member or members of that class. That's just how our brains work.

But I also think that most of us here have some understanding of the many bad things which arise out of this tendency. It's easy to think of examples, of course, but as is often discussed, making such comparisons can create more heat than light and are best avoided.

So, let's just think specifically about people who hear voices. Just the linked thread alone, not to mention the article, has already informed me of how the diversity of experience among this group of people is much wider than I was aware, but more importantly, that often it's neither socially or interpersonally problematic and, even when it is, it can be accommodated or ameliorated. Clearly, it is a fallacy to generalize that all people who hear voices are a threat, because most are not. So, the stigma attached to and the othering of people who hear voices is unwarranted. It's common and often unquestioned — but it shouldn't be.

Far more important for the purposes of this conversation is that stigmatization and othering is, like, one of the most obvious ways that ableism manifests against those of us who are disabled. Those of us with mobility challenges have reclaimed "crip" because that term has been viciously derogatory and it really is a prime example of how all that stigma and othering and disdain and, tellingly, disgust can be distilled down to a single word.

The thing is, in my observation, people who have challenges in the area of what we call "mental health" are to this day notably even more stigmatized and hurt by other people than those of us with other illnesses and challenges. Honestly, I've lived almost all my life with a mood disorder that's been far more challenging for me in our culture than even my genetic skeletal dysplyasia has been, and in my personal experience it's been more stigmatized by other people and I've more often felt excluded on that basis. I don't have any personal experience of living with hearing voices and with similar issues, but my observation of other people lead me to believe that these things are especially stigmatized.

I honestly can't see any reasonable argument that would exclude this group of people from those who experience ableism — what I observe aimed at this group is a lot of ableism in some of its distilled and most virulent forms.

Again, I'm going to avoid specific comparisons, but I think we can all think of examples where people have said, or say, something to the effect of I, and people like myself, have a valid grievance, but those other people don't and I resent being grouped with them. In fact, doing so makes a mockery of the issues at stake. I've seen this happen here on MetaFilter, and specifically MetaTalk, over and over again and usually these objections are very sincere and quite impassioned. Nevertheless, they were wrong — and, usually, the community as a whole after some years comes to a consensus that they were wrong. Sometimes the individuals themselves do. I know I have.

Inherent in this is something really important. I might even say that it's a hill that is, in fact, worth dying on. And it's this: it's very easy to include ourselves in an aggrieved group seeking consideration and redress, and it's almost as easy to include others unlike ourselves who are, nevertheless, generally seen positively, but it's much more difficult to include people we don't think of as being similar to ourselves and who are generally seen negatively — but that very difficulty is the point.

The "friction", so to speak, in getting people to question their exclusionary assumptions about people who hear voices is the ableism. That's what ableism is, that's how it works. If those of us who include ourselves — because we feel we have a self-evidently valid complaint about ableism — won't make an attempt to question our own assumptions and be more inclusive, then we're a poor example to the people we're asking to question their ableist assumptions.

On a personal note, as an abuse survivor I don't have the opportunity to really "other" my abuser. My abuser was my father, who had the same genetic mutation I do and spent cumulatively years in hospitals as a child (as I similarly felt abandoned into a distant hospital as a child), who lived with chronic pain and mobility issues, suffered through numerous surgeries and recoveries, and also suffered from a serious mood disorder as I do — and all these issues and experiences factor into who he was and why and how he was abusive and, furthermore, it's even now still tempting for me to say, "well, given all that, he deserves credit for not being worse". But, even so, all these things weren't the essence of him, nor were they excuses for his abuse. He bears the responsibility for his abuse on his own, as an individual who did the things he did. I don't do the things he did, for all our similarities. Linking his disabilities to his abusiveness somehow lets him off the hook while falsely implicating all of us with similar experiences.
posted by Ivan Fyodorovich at 11:56 AM on May 31 [10 favorites]


One of the abelist things that I would like to see stop - including and especially from other disabled people - is disability olympics. Whether it is more stigmatizing to have a mental illness or physical illness presumes a lot about other people’s experiences. I have seen people say things like “no one would tell a wheelchair user to stop using their wheelchair!” when talking about psychiatric medication.

And yes they would. People say things like that here! They say things like people just need more exercise or that they need to walk or that muscle atrophy should be avoided at all costs - including pain and worsening of conditions.

People ALSO say here things about how XYZ medication is terrible and people should get off it! I got off it and so can you! It is ruining your life even if you don’t know it and feel better and more functional on it. I have seen people say this about psychiatric medication and … um … other? medication.

The other huge abelism scourge that plagues this site is being very hard on people who do not word things Perfectly. There is no space to not be the smartest person in the room. I think this is baked into many people’s identity and it comes out in how people interact with comments that are more messily worded than they would have liked. Immediate presumption of bad faith or maliciousness or ignorance rather than just … having fewer words to express an idea or thought.
posted by Bottlecap at 1:31 PM on May 31 [57 favorites]


Oh sorry one more thing is the abelism of how people talk about people who are able to do less than them. “Just cook every meal!” Or about housekeeping standards or hygiene standards or working or volunteering or calling their representatives…

In general, I just would like to see much less judgement of how people use their energy and time. Less assumption that disabled people who are capable of less aren’t in the conversation! We might even be more represented here because it is a text forum where many of us have the ability to participate where we would not other places. But then we are shut out of conversations around health in particular because we don’t fit the model of Just Be Healthy. And the conversations where we might have the opportunity to really create community and support and understanding for one another, we are hesitant to participate because there is already a flood of comments about how people should just be healthy and would be if they did one simple step of not being disabled.

For instance, it would be amazing to ever have a covid thread that didn’t exclude anyone who thinks “hey maybe I don’t actually have the health to decide to downplay it! Maybe I can’t risk long covid!” Or that maybe there be some room for us to enjoy our lives in solitude and grieve our social lives and be many things but to talk about the pandemic in a way that isn’t deeply othering to our experiences. Or hey, what about a thread about fatphobia that didn’t ever devolve into how not to be fat. Or a thread about cardiology that had space for people who are never going to have good cardiovascular health and aren’t forced to wade through 40 comments about how their lives are shortened and what a tragedy and they should just walk and work their way up to having a well formed heart.

What about just like ANY thread about health and disability not being about how we are So Tragic and how people have avoided through their moral Righteousness to not be like us.
posted by Bottlecap at 1:42 PM on May 31 [57 favorites]


Yeah, I think you hit the nail on the head in terms of concrete Changes I'd Like To See around disability in this space, Bottlecap. I hope more people will visit this thread and listen to what you have to say.
posted by StrikeTheViol at 5:38 PM on May 31 [4 favorites]


Yes, plus a million to everything Bottlecap said
posted by lazaruslong at 12:39 AM on June 1 [1 favorite]


FPP from 2011.
Things have gotten better at Metafilter.. Read the comments.
posted by Ideefixe at 5:41 AM on June 1


I’m not sure they have as very few of those comments suggested that she was likely to push people in front of a train or whatever, but a lot of the language is jarring.
posted by warriorqueen at 6:16 AM on June 1 [1 favorite]


The other huge abelism scourge that plagues this site is being very hard on people who do not word things Perfectly. There is no space to not be the smartest person in the room. I think this is baked into many people’s identity and it comes out in how people interact with comments that are more messily worded than they would have liked. Immediate presumption of bad faith or maliciousness or ignorance rather than just … having fewer words to express an idea or thought.

Well said. This is precisely why I do not comment on any post that isn't about music or silly stuff anymore.
posted by sundrop at 6:34 AM on June 1 [21 favorites]


Immediate presumption of bad faith or maliciousness or ignorance rather than just … having fewer words to express an idea or thought.

...Well said. This is precisely why I do not comment on any post that isn't about music or silly stuff anymore.


That is a really tough one and it's one reason I started this thread. Like most MeFites I think, I've been on both ends.

I think it is fair to ask everyone to dial down their emotional reactions to threads like the Hearing Voices one and be aware that people are all learning, etc. That's the ask directed at people who are lived-experience or directly impacted - to manage our responses.

At the same time, what can we ask from the non-impacted or non-lived-experience people who are participating in those threads? (I don't have an answer to this, but I am asking.)
posted by warriorqueen at 7:39 AM on June 1 [5 favorites]


Immediate presumption of bad faith or maliciousness or ignorance rather than just … having fewer words to express an idea or thought.

...Well said. This is precisely why I do not comment on any post that isn't about music or silly stuff anymore.


This is pretty much where I am now as well - probably going to quit commenting on the Blue altogether from here on out and just stick with Ask. I'm no longer willing to subject myself to that kind of unkindness or try to figure out whether my lived experience counts enough for people here.
posted by FencingGal at 7:47 AM on June 1 [15 favorites]


what can we ask from the non-impacted or non-lived-experience people who are participating in those threads?

I have a chronic pain issue which, because it's "invisible", is an ongoing source of frustration, both for me and for those who must deal with me (not always, just sometimes, some particularly shitty days).

A few years back, when I finally had to accept that this condition wasn't going to magically go away (that I was likely going to be stuck with it for the rest of my life) I did some proper research. I guess I wasn't surprised to find (via a piece on living with people with chronic pain) that one of the expected symptoms is anger/rage. Which didn't suddenly make me feel good or justified about unleashing on people who "just didn't fucking get it", but rather get better at feeling such moments coming on and, if I possibly could, just excusing myself, leaving the situation ... because who needs yet another grouchy middle-aged man making noise?

And it does go both ways. I find I'm now much better at handling other peoples' eruptions -- not taking them personally etc. It all gets back to the old wisdom that everybody we ever meet (or just pass on the street) -- they're dealing with something, even if they're smiling. It could be pain, it could be grief, it could be addiction, depression, sheer existential devastation. Who knows? You certainly don't, often even if they tell you what it is, because some things are profoundly inexpressible ... or we're just too thick to fucking get it.

Which gets me to the one hill I will die on in this regard. Please don't get amateur psychologist on me and try to suggest that my anger-stress-whatever is what's causing the f***ing pain.

(bites proverbial tongue -- looks back at the question he was intending to answer)

what can we ask from the non-impacted or non-lived-experience people who are participating in those threads?

a simple tldr, I guess. Please don't assume you even begin to know what's really going on with any internet stranger (or friend for that matter), because we're all wrestling with some kind of invisible monster. Better just to step back, take a breath, give a little space every now and then ... and hope you'll get the same when it's your day to be at least a little crazy for completely sane reasons.
posted by philip-random at 8:18 AM on June 1 [9 favorites]


I'm sorry you feel that way FencingGal. I tried to go out of my way to say that I could tell your comment came from a caring place, and I appreciate your comments in a lot of threads.

I admit I'm at a loss to balance this one out. To zoom in, the "I worry that if you act strangely you'll get raped" thing is a pretty painful narrative to encounter because it has been such a common means of control of women. I know that as someone with a history of PTSD and DID that I would probably never win a case that was my word against anyone else's, and it's a reason that I have overlooked sexual harrassment in the workplace in the past. It's even worse for people with a history of psychosis.

It's a stick that's often used to try to get people to comply with various treatments - or even to constrain their lives.

I am sorry that history played into my response. I was on the other end in the Daniel Lavery thread and I understand your feelings.
posted by warriorqueen at 8:22 AM on June 1 [10 favorites]


I am really hesitant to comment in this thread for the reasons mentioned above but I would really like it if it was clearly written which threads are only for people affected (themselves) by the exact thing in question and which threads are open to other types of personal experience and opinions. It often seems like there's an informal expectation that most (all?) threads related to disability are the first type - and that's fine if it really is black and white like that - but often it's said that all experiences are welcomed but then they aren't actually, and I find it really stressful to try to guess what the expectations are. It's also very unclear for me when negative experiences with a thing are ok to talk about (even a thing that you experienced in yourself or saw directly in another person) or only positive experiences. I do understand that it's hurtful for some to hear any negative experiences and that acceptance of differences is best. On the other hand, I find that this can sometimes erase people's lived experience (like my own) with certain types of disability or ND that causes harmful effects in their own lives that aren't resolved by just accepting and celebrating the differences.

I'm various flavours of neurodivergent so I really struggle with these unwritten expectations and I really don't want to hurt anyone by expressing my opinions/experiences in a way people don't like so I usually just avoid these threads entirely. Which may just be the best solution anyway and that's fine if so, not every thread has to be open to me at all. (I'm not going to say how long it took me to write this but I did try my best to not word it offensively, for what it's worth, and I'm sorry if I didn't succeed).
posted by randomnity at 8:54 AM on June 1 [15 favorites]


For a little while we often had a MetaTalk open thread about disability and for disabled people ongoing, for disabled people to chat about anything and everything. Would people enjoy having that happen again/more often?
posted by brainwane at 9:21 AM on June 1 [4 favorites]


(thanks to warriorqueen for setting this up)

I commented early in the Hearing Voices thread about a personal experience with a schizophrenic who heard voices, was a super nice guy, and ended up performing a mass shooting. I'm also a cishet white male, so that's my starting point here.

With these metas, I never know whether to focus on the specific topic (HV movement and article) or the bigger issues around how we interact with others on Metafilter. I think both are important, so I'll address both, but maybe in separate long comments.

With regard to the article and my comment, I certainly did not mean to offend people who hear voices or have other mental issues/disabilities/illnesses. I was responding to the specific article from my own perspective, which includes:

* I was very close to a mass shooting and was in social circles with the shooter for several years prior and saw how he deteriorated after quitting meds.
* I have been close lifelong friends with a family whose male members all hear(d) voices and have seen them interact with medications, the health system (which sucks!), group homes, etc. The father killed himself long ago. One of the sons suicided by walk into traffic in his 30s. The other is hanging on with a combo of group home and meds. The mother is ... having a hard life. At no point did I think of any of them as "less than" or treat any of them as other than just members of my social circles with hopes and dreams and talents and senses of humor.
* I personally have attempted suicide and was in an inpatient ward (25 years ago) and have experienced lots of meds, therapy, etc. I don't hear voices though.
* My wife was a respected psych nurse in a state facility and we have had many conversations about these topics. We discussed the article at length. Also, her own mother was head nurse at the same facility until she died and was beloved of many patients.
* I know the history of the facility (Dorothea Dix in NC) in question, including the 60s/70s movement away from institutionalization and its eventual closure and conversion to a park. My wife refuses to go to events there because in our current health system, setting all those folks free to self-actualize did not have the positive results expected.

I did not read the thread as a support discussion for people with voices, but as a public policy discussion. For what it's worth, here's my/mrs. freecell's combined take: Our health care system in the US is not good and mentally ill people are badly served overall. All of the history in the article is pretty much right (past drugs that turned out bad, over-medication, paternalism, etc). Also, peer counseling such as in the HV movement is a fantastic idea. Also, if people are hearing voices and it doesn't affect them negatively or can be incorporated into a functional life, great. They may not need medication or even therapy (although for certain mental illnesses left untreated, they progressively damage the brain; someone who has been untreated for schizophrenia for years or decades can get to a tough place).

However ... my partner has dealt with hundreds of patients who are at the nexus of multiple problems: serious mental illness, dark voices, homelessness, poverty, lack of family, etc. For many of them, medication is the difference between "can exist in the world and do ok" and "dead or hospitalized". She thinks the idea that we can solve all that by tossing the meds and western medicine and having support groups is preposterous (her words). The woman profiled in the article is maybe not that representative of everyone with voices, and not a good example of someone who can just "live with" voices: She has extensive support resources (parents both lawyers - lucky her!); she has abused a bunch of recreational drugs, which is a terrible idea if you have certain mental illnesses; she has ended up in barter-for-sex and been abused; she's tried to kill herself even after stopping meds and being involved with HVN; her voices tell her to kill herself and other people. I have no idea how her life would have been different without all the variables (meds, street drugs, etc.) but she is clearly *not* one of the vast majority of mentally ill people who don't pose a danger to themselves or others. It's easy to read her story as a funhouse mirror image of a "bootstraps" story and feel doubtful that things would turn out so well (?) for others. I was responding partly to that and not to any fellow Mefites with disabilities.

Anyway, that's my take on the specific topic. Lots of others in the thread had similar positive experiences with medication, either personally or with family members. Which, actually, that's a good last point; if someone has mental issues that cause erratic or destructive behavior like in the article, it impacts everyone around them. So I don't think it's right to say we should listen only to the people with the disabilities, although we should center them. During the years I had depression/bipolar disorder (which I made it through, and arguably resulted in better artistic output than the current "stable" me), I was a major pain in the ass to a lot of people without meaning to be. I sometimes fantasize about a "My Name is Earl"-like road trip where I go apologize to everyone, but that's not possible for lots of reasons.

I'll try to come back later with thoughtful comments on ableism.
posted by freecellwizard at 10:39 AM on June 1 [11 favorites]


See, this I think is getting to part of the issues we have in discussing things on the site. I'm not really sure how you got from that article to public policy.

To generalize it I'm at a loss for how to resolve that but it seems like that initial difference could account for a lot of friction.
posted by warriorqueen at 10:54 AM on June 1 [8 favorites]


> I'll try to come back later with thoughtful comments on ableism.

Yes, something relevant to this thread (how to deal better with ableism on the site) would be more helpful than a detailed, spirited defense of your behavior and a restatement of your position, which reopens the same wound we were trying to heal. Note the parenthetical take-back off your one allowance to people who hear voices:

> They may not need medication or even therapy (although for certain mental illnesses left untreated, they progressively damage the brain; someone who has been untreated for schizophrenia for years or decades can get to a tough place).
posted by thoroughburro at 11:58 AM on June 1 [10 favorites]


For a little while we often had a MetaTalk open thread about disability and for disabled people ongoing, for disabled people to chat about anything and everything. Would people enjoy having that happen again/more often?

Yes, those threads were helpful. The framing of those threads was quite extensive and well-done. Thank you for bringing it up.
posted by cynical pinnacle at 12:49 PM on June 1


I often struggle reading threads about disability here because a big contingent of folks are totally bought into the social model of disability and another the medical model. Both illuminate aspects of disability and both have serious flaws and gaps and they conflict in places. So there’s a lot of taking past one another.
posted by congen at 1:46 PM on June 1 [10 favorites]


I just think maybe it would be good if people stopped approaching other people as “public policy.” Like it’s just our LIVES and maybe it would be great if disabled existence weren’t politicized. Maybe that would be a super great place for everyone to start on working on abelism. “Am I treating someone just living their life as a political/policy/whatever?” If Yes, maybe just decide that you don’t need to make that comment. Maybe understand how othering and alienating it is to have people not interact with you as a PERSON but as an extension of public policy.
posted by Bottlecap at 3:30 PM on June 1 [25 favorites]


Like the dichotomy isn’t “support group” vs “public policy” those are not the two options for having a conversation. In both instances, you have placed disabled people at a remove from yourself. People who require a special safe place for their delicate feelings and therapizing OR as a place where everyone else can gather and talk about Those People. Instead, one could approach conversation as being WITH one another. People who are just like you. Who are in the same space as you. Who probably don’t want to encounter a wall of text about how you don’t see them as being in the same category as you. Perpetuating that we’re scary and should be held at a distance.
posted by Bottlecap at 3:35 PM on June 1 [27 favorites]


These last two comments by Bottlecap get to the heart of the matter, I think. I feel like if we all took them to heart, it would help a great deal.

Of course the HV thread would involve "public policy" discussion because that's implicit. Just as it is with many other sensitive topics. It's how we talk about policy that matters — if you're talking about a group of people but you're not writing with an awareness that members of that group are reading your words, that's a big problem. The comment above by freecellwizard contains a lot of credible info but it's talking about people as if they're not in the room.

I've been struggling with how to understand and articulate what has upset me so badly about the HV thread and this one. I guess the most succinct way to put it is that the HV discussion and this thread on ableism has strongly involved respectability politics. It reveals that sensitivity and care are contingent.

And I'm getting very strong "I'm so tired of the grievance mob" vibes that I am so incredibly fucking sick of after almost 20 years of MetaTalk. People always act like it's such a huge, unreasonable demand that they change how they engage about something and then, later, it turns out it wasn't actually that big of an ask.
posted by Ivan Fyodorovich at 8:41 PM on June 1 [19 favorites]


There's a surprising stat out of the UK that 8% of children hear voices — about the same incidence as asthma or dyslexia — but 75% of those kids only hear them once.

This is public heath data of course, but I think it matters for us because it shows just how many of us probably have had the experience, yet I think I must have seen a hundred comments mentioning having dyslexia and maybe ten mentioning having asthma for every comment mentioning hearing voices.

hearing voices.org says about 4% of people hear voices (the same incidence as asthma, according to them).
posted by jamjam at 8:51 PM on June 1 [5 favorites]


Ok I have one more thing to say. It is none of us our job to judge for anyone else what they want their life to look like. And yea a lot of people end up doing sex work because it’s accessible to them while disabled and it’s a choice they make and want more than the alternatives available. A lot of people have precarious housing situations because they’re disabled. People self medicate. Like. All the things in your comment that are supposed to be reasons why it’s ok to Other and say you know how to live her life better than she does? Those are just things about being a human who is not you. I really tried to let that go because in some ways this thread is not the place. But in other ways it is EXACTLY the place. Because a big part of abelism is for sure pointing at the knockon impacts of disabilities and saying how undesirable and outside of normal society they are.

I have a very hard time articulating this part of abelism, but it’s really pervasive. To be judged for the choices you make as a disabled person. People who aren’t disabled (yet) get to be imperfect and make imperfect choices and even make choices people don’t agree with. But disabled people have to be perfect. All the time. We have to be compliant to nurses. We have to be compliant to social workers. We have to be compliant to doctors. We have to be compliant to therapists. And fucking forbid any of those people disagree with each other and you are in a bind of how to thread that needle! Your life is ruled by petty tyrants. And when you make choices that give you back autonomy, forbid that those choices are not the perfectly socially acceptable ones. Forbid you do drugs (or don’t do drugs! Medication is also drugs) to escape your reality for a bit. It’s ok for abled people to relax, but not disabled people. And now everyone is an expert on how medical marajuana will cure everyone and everything unless it makes you worse and you should have never tried it, you bad disabled, you.

But yes, living at the margins of society and being judged for it is part of the disabled experience and it is part of enduring abelism. It makes me near about spit teeth to read people judging how if disabled people were just more perfect things would be better. Almost all disabled people have PTSD and the attendant hyper-vigilance. It’s not a good thing to feel like you have to be perfect. It’s traumatizing. And maybe your nurse wife should spend some time actually living at a homeless shelter and figuring out how to live on $10 a day *total* before deciding what disabled people should do with their lives. Yes, the system has certainly failed disabled people. But the idea that institutions are the answer and widespread locked wards should return is frankly fucking HORRIFYING. And instead we should actually support disability benefits that are big enough to live on and don’t require people to be perfect and never let their guard down and actually have some space to heal.

What do I want out of a less abelist metafilter? To have people acknowledge that disabled people get to make choices just like everyone else and we get to decide for ourselves what our best life looks like. Don’t tell me I have to be healthy to be happy. Don’t tell me that my happiness is worth less because it doesn’t look like yours.
posted by Bottlecap at 8:58 PM on June 1 [37 favorites]


Oh yes; actually ivan fyodoyorvich said it just right: I am sick of respectability politics about being disabled. I could delete my whole comment and just point at that with emphasis.
posted by Bottlecap at 9:00 PM on June 1 [4 favorites]


Yeah see I guess where I am hoping to come to is rather than asking about impact, because I think we know what the impact is (and it's really hard not to talk about that) is what can we do?

So like, people who want to discuss policy* and their support of the current practices- what approach would you like those of us who find those discussions to reinforce stereotypes and to other us to take?

I hear that you want to Not Be Thought Of As Bad. I don't either and don't love being called out, so I get it, and I get that we all have a concern, a really valid concern, that the community we care about is being harming collectively by all the individual requests about it, because we all stick our foots in it in sometime if we talk about those things.

But what's the solution, for you? Do you want us to pass over your comment assuming good intent and walk away instead? Like, is that the community you want? (We want, because I've stuck my foot in it plenty of times here!)

Some options are:

- stay out of the conversation/manage our emotional responses

- assume that if you feel like we can manage our emotional responses, you can manage yours if we point out they are coming across as condescending/stereotyped so we can converse

- have a code phrase where we could kind of flash "person with issue noting this is a painful stereotype" like...polkaroo or something

- should we start a community practice of pre-framing discussions and trying to keep to the OP's intent? Because that might help.

* As far as I know you can be fully medicated AND go to a Hearing Voices group. I would have to re-read the article but I didn't see a call for changes in policy around commitment and 48h holds etc. - for those whose actions lead there, despite Phantom Girlfriend's assertions.
posted by warriorqueen at 5:05 AM on June 2 [6 favorites]


I appreciate this post and the discussion and comments made by everyone thus far. I hope this is not a derail: I truly wish commenters would stop posting comments in a small size. This does not affect me personally but several people have repeatedly asked us to stop that practice. Those are only the folks who have spoken up. It seems reasonable that the practice affects others we have not heard from. That is absolutely ableism in practice and we need to cut it out so as many people as possible can read comments as easily as possible.

To the larger discussion, humans seem to be plagued by the belief that we, as individuals, know better than whomever we are contemplating. We know better than our parents. We know better than our kids. We know better than our siblings. We know better than our neighbors. We know better than our coworkers, and the list goes on. I do not understand, like literally do not understand, why Americans (in particular, because I am American) are so judgmental of others and so willing to share that judgment both casually and cruelly. I try to fight that impulse but often fail. Anyway, I appreciate this thread. Thank you to the OP and the participants.
posted by Bella Donna at 5:07 AM on June 2 [6 favorites]


But disabled people have to be perfect. All the time. We have to be compliant to nurses. We have to be compliant to social workers. We have to be compliant to doctors. We have to be compliant to therapists. And fucking forbid any of those people disagree with each other and you are in a bind of how to thread that needle!

I just want to underscore this with a reference to the language of public health policy: what do we call it when someone takes their meds on time in exactly the way that a doctor would want in an ideal world, regardless of whether that mee schedule is achievable?

medication compliance.

And to be clear, when I say achievable, I am thinking about reasons that actual people I know who have been trying their actual best to take meds as prescribed have had serious difficulties with doing so: time blindness combined with severe ADHD executive function issues; series of overlapping meds prescribed every two hours with no attention paid to patient needs for sleep; meds that produce constant painful, frightening or exhausting side effects; extremely expensive meds for patients on limited incomes. I am currently watching a close friend with severe migraines follow a medication and supplementation regimen that is not in keeping with the current guidelines of the medical literature because the local headache specialist saw them, apparently decided against all evidence that more exercise and less pain medication would help their chronic pain condition, and set them the regimen. It will be easier to access care that doesn't contravene the literature if my friend, who is a long term disability advocate with considerable experience in the sphere, remains compliant with the medication regimen and carefully documents that it is not working for months, and so they are currently doing so (in conjunction with a complaint against the doctor, documentation of the relevant literature guidelines, and documentation of the probable reasons the doctor is behaving in the way that they are).

We call this obedience to a doctor compliance, as if the only reason a patient might struggle to take medication as prescribed by a doctor is a question of will. As though medical care providers are infallible. Anyone who has dealt with long term disability knows, painfully, that this is not true. And yet.
posted by sciatrix at 5:14 AM on June 2 [30 favorites]


Yes, something relevant to this thread (how to deal better with ableism on the site) would be more helpful than a detailed, spirited defense of your behavior and a restatement of your position, which reopens the same wound we were trying to heal.

This is what is bad about Metafilter. You're singling out my behavior as bad, when I was willing to step up to provide context for what seems to be a bunch of others who have become reluctant to speak, and signaled that knowing more about why I posted what I did is meaningless to you. Perhaps you require an "out group" to feel good and you'd like to place me in that group. By the way, go read the other thread and note the various people who were honestly mystified about how the thread was "going badly". I'm sorry, I just cannot handle this pattern:

* Person A makes a comment about their own experience or opinion from a place of good faith.
* Person B decides without evidence that it's directed at them personally or that it's harmful in an unspecified way to some other group they've decided to speak for despite not being appointed to do that.
* Person B personally attacks person A, or makes a brief and generalized comment about how much they hate Metafilter.
* Person A takes one more step towards self-censoring and turning this place into an echo chamber that benefits no one.

This is literally the only place on the Internet I care about and I don't appreciate the us-versus-them mentality that's being cultivated. After spending so long on a thoughtful comment to be responded to like that, do you think I feel motivated to cautiously give my thoughts on ableism? It feels like people are dealing with their own internal trauma or anxieties by sniping at others. I don't think that's fair, especially since the various social norms being imposed are not universally agreed upon and evolving at warp speed due to social media.

Thank you to warriorqueen though for keeping it decent. Your last comment was a perfect example of disagreement (or more likely misunderstanding) without being mean. R.e. your comment, I think of the Blue as "here's a place to share interesting things that are happening in the world" versus the Green which is more personal.
posted by freecellwizard at 5:33 AM on June 2 [17 favorites]


Let me explicitly add: this is also a part of discussing policy and structural experiences with illness, disability, and care. I think I mentioned earlier that I think that pan-disability coalition building is a matter of active alliance between communities that have different needs and goals, right?

Frameworks like this one, in which the language of patient care frames patients as "noncompliant" for not successfully taking meds as prescribed regardless of the cost or systematic reasons that patients might not be able to do so, apply to people with all kinds of conditions. Take this specific topic as an example; it's a struggle that pertains to:

-people who, yes, hear voices, as well as a wide variety of other mental health conditions
-people with chronic pain conditions
-people undergoing chemotherapy
-people struggling with substance dependency issues
-poor people who have been prescribed expensive medication
-people of color, fat people, and other groups who are more likely to be framed adversarially by a medical system generally regardless of specific condition

There are a lot of issues like this that seem like they might only affect some kinds of disabilities but actually turn out to be much broader. I think it's worth having these kinds of conversations that speak assuming that affected parties might be on the room because that's the only way, in my experience, that we start to learn about problems like this that resonate across lots of different experiences but tend not to be obvious unless you've spoken to people with perspectives that tend not to be showcased in general discourse. And I think that this, too, raises questions about policy that are worth considering and thinking about.

My bias is that I generally want to hear from perspectives that don't frequently get aired because I think those perspectives can inform policy discussions in a useful way. Especially when we're talking about stigmatized groups, whose perspectives by definition don't get into broader discourse, I think it's important to always act in the expectation that someone who has a perspective we often do not get to see will be present, and to act in the hopes that those people will feel comfortable sharing.

But that's assuming that other people also value these opportunities to listen, you know? StrikeTheViol, you've said that you find comparing these experiences under one banner to be somewhat offensive upthread, and you've invoked cishet otherkin in queer spaces--cishet to underscore that these people have no right to queer space, and otherkin as a highly stigmatized group of their own, of course--as a comparison. I think we disagree very much about how we should talk about ableism here and how we should handle stigma within the disabled community, such as it is, here. That's okay--consensus doesn't have to be present, of course, for us to remain in conversation. But if we're going to be seeking a better way to have these conversations, I do think it's important to ask ourselves what kinds of conversations we're actually trying to have, and what values for those conversations we want to prioritize.
posted by sciatrix at 5:44 AM on June 2 [11 favorites]


I don’t think I made a value judgement about your behavior, other than stating that you are spiritedly defending it in a way counterproductive to this thread, which is focused on reducing ableism... not for understanding the (yes, sympathetic) reasons ableism persists in the medical community. It’s not the behavior per se, it’s the place.

I would repeat my most important point: in your defense of your behavior, you extended one olive branch. You allowed that, maybe, some, in certain cases, individuals might not need medication and supervision. But you couldn’t countenance that for a full sentence before you backsied that attempt at respect.

I don’t accept that I am being incivil.
posted by thoroughburro at 5:45 AM on June 2 [4 favorites]


Actually, on reflection I may be setting up more obstacles than I’m knocking over. I’m making genuine observations, but they probably shouldn’t come from me here, now. Apologies, freecellwizard; I should have tempered my phrasing more. You don’t see it, but what you’ve said here is experienced by me and others as an attack on our right to exist. So it’s hard to remain entirely passionless, and the result comes across as cold and calculated or loud and angry.

Anyway, now I have to write a new pepper post, so it’s not a complete loss.
posted by thoroughburro at 6:00 AM on June 2 [1 favorite]


Let me tease this out a bit:

First, I’m not sure I agree Person B is deciding something is “directed at them without evidence.” I mean, the original article was not directed at you but you feel it’s important/interesting to comment. So I think we can at least extend that to others.

So let’s just say Person B feels/believes that your comment is contributing, either by content or volume, to creating either a stereotype (which harms people in general) or an environment where someone like me, who hears voices, has to kind of extend graciousness about it because MetaFilter is “just” reflecting the society in which I do live.

What would you like Person B, say me, to do? Walk away from the thread and potentially the site in exchange for keeping MetaFilter healthy? Do you think that your comment should not be responded to? Or is it short comments that bite?
posted by warriorqueen at 6:27 AM on June 2 [9 favorites]


I realized in the shower that I may have gaslit myself into believing I targeted freecellwizard’s behavior with my initial response. I did not. The only person who introduced freecellwizard’s behavior to the thread is freecellwizard, unless I missed something.
posted by thoroughburro at 6:33 AM on June 2 [2 favorites]


Please, if anyone refers to a specific (and not generic) "you", it would be very helpful to make clear who that "you" is.
posted by NotLost at 6:38 AM on June 2 [6 favorites]


My you is directed at freecellwizard, good point.
posted by warriorqueen at 6:41 AM on June 2


So I've spent the last while trying to figure out what it was exactly that I have to say about this, because I do have something to say. And like, here's my problem: I'm not entirely sure that my voice is the right one for this conversation; my experience of my condition is comparatively short, I've only had it for a little over two years, and as far as my brain is concerned, most of that didn't actually happen (the weirdness of having missed that much of my own life is just... a thing). It's also possibly not permanent. But, even with all that self doubt I often find myself consistently being the one who speaks up for the fact that we have long-haulers here reading what others are writing, because as Bottlecap points out, COVID threads can be bad, and they're bad in a few different ways.

So like, there's the obvious stuff: how dismissive it is to only focus on the athletic person who is a long hauler and ignore all the rest of us; that occasional weirdness with people bringing up their pet theory that long haulers are going to cause all sorts of societal harms because of brain fog. Also though, it can be pretty draining to read people catastrophize about what for me is just life now. At the same time, I don't want to downplay what other folks are feeling. Like, you should be scared of COVID, it's a serious illness that can cause death or lasting harm. People should be reminded that while they might feel o.k. going out and returning to normal they're forgetting about people who just can't do that. So that leaves me what options? Feeling shitty that people I agree with are using my struggle in a way that feels like it's disconnected from recognizing me as a person; spending energy I don't really have trying to explain that you can in fact live a life worth having with long haul; or feeling shitty that I don't get to participate in conversations that I have a very real place in.

I've mentioned before that I think there are different stories that are true about the Pandemic, and that those truths don't always work well in the same conversation. Honestly I think the truth of my experience learning to live with everything I've learned to live with and the truth of why immunocompromised people (rightly) feel forgotten, might be two of those truths. And it just seems like there's something fundamentally wrong with that. I see the discussion of "returning to normal" and how it forgets everyone for who that's not an option. I want to just shake people who are so damn complacent because there's so many stories of folks had the mild "get over it in a couple weeks" variety of COVID that how this disease can have such serious effects gets drowned out in the cultural narrative.

At the same time though, nobody likes being talked about as if they're not in the room. Nobody likes to be talked about as a warning. If I'm hearing folks right, that's what went wrong with HV discussion, and seems to be the main thesis of this Meta. Everybody deserves a chance to tell their own story.

So, what's the solution? I don't know. People's lives are on the line, and immunocompromised folks, and others who are being left behind, need to be heard. Their lived experience is being lost, and part of that is a justified fear of COVID. It feels like asking so much to say "hey please remember I'm real too", to people who are already struggling so hard to be remembered and who already have so many more obstacles than most.

But... I'm real too.
posted by Gygesringtone at 7:16 AM on June 2 [26 favorites]


The only person who introduced freecellwizard’s behavior to the thread is freecellwizard, unless I missed something.

None of this discussion seems very specific about what freecellwizard’s behavior is - perhaps the original reference is to the other thread but whatever happened there isn’t there anymore. I think I can characterize the issues with freecellwizard’s post here though. It’s quietly pretty tendentious:

- first anecdote that comes to mind is a mass shooting?

- jab at deinstitutionalization thrown in

- really when did this conversation become one about public policy?

- rather uncharitable assessment of the person profiled in the article

I don’t know if it’s actually the continuation of a deleted argument or the beginning of a new one but there are four or five arguments that could be had based on that comment, even though the tone is polite. Which I think is not what a lot of people were looking for out of the thread. Is that a fair assessment?
posted by atoxyl at 9:45 AM on June 2 [6 favorites]


I am sympathetic to the idea of having something one wants to say somewhere that feels important, that is contrary to the thrust of the article, and finding that the thread has implicitly declared it off-limits. Family/friends absolutely have biases but it seems like we should be able to recognize that the emotional, traumatic associations of, say, having lost a partner to mental illness are both biasing and valid, and to read those comments with an understanding of that. Professionals absolutely have biases, but - there’s a very delicate thing here because on one hand questioning the ability of people with mental illnesses to be treated as reliable narrators of their own lives is treated as problematic for very good reasons, but on the other literally nobody is a reliable narrator of their own life. It’s not bad to have the perspective of professional remove, understanding that professionals also are biased by what they’re taught and their institutional role.

So I guess my take is that there’s a place for all of that, but if I wanted to question, for example, whether the program described in the article works for most people, I would try to approach that via research about the program, other people’s experience with the program, and related medical literature, not just dropping scary anecdotes or diagnosing the subject of the profile as a danger based on instinct.
posted by atoxyl at 10:07 AM on June 2 [8 favorites]


Assume good intent.

Default to compassion and curiosity.

Others can benefit from speaking your experience, but you can benefit more from listening to theirs.

Speak when it is Necessary, Kind, and True.

Amplify voices, not your experience of someone's voice.

The kindest intent can still cause harm. Accept responsibility for unintended harm.

Never about someone without someone.
posted by majick at 10:22 AM on June 2 [16 favorites]


I've mentioned before that I think there are different stories that are true about the Pandemic, and that those truths don't always work well in the same conversation. Honestly I think the truth of my experience learning to live with everything I've learned to live with and the truth of why immunocompromised people (rightly) feel forgotten, might be two of those truths. And it just seems like there's something fundamentally wrong with that. I see the discussion of "returning to normal" and how it forgets everyone for who that's not an option. I want to just shake people who are so damn complacent because there's so many stories of folks had the mild "get over it in a couple weeks" variety of COVID that how this disease can have such serious effects gets drowned out in the cultural narrative.

I too have watched all of the COVID threads go variously poorly and I'm just kind of at a loss for what it would look like if they went well. am really hoping that some of the people who are finding themselves so enraged and hurt by them might be able to say how a "good" COVID thread would look. Would the post itself be framed differently? Would folks like me, who did have the "get over it in two weeks" variety, just kind of step back and not really discuss much? (And to be clear, that's fine.) Caveats applied religiously throughout? What kind of discussion, basically, would immune compromised/long COVID/parents of unvaccinated kids/cautious-for-other-reasons folks not find excludes them? Not being snarky, I am sincerely thinking of all of the above as potential ways for someone like myself to avoid making those threads feel exclusionary.

(If it seems weird or rude to single COVID threads out when so many other types of threads also go badly, I apologize--it's just a topic that probably draws participation from more of the site than most, as it is currently affecting absolutely everyone on some level. But the same questions apply to all of these topics under discussion!)
posted by We put our faith in Blast Hardcheese at 12:29 PM on June 2 [6 favorites]


As stated above, I assume that threads on the blue, especially about novel or controversial ideas, can and should provoke spirited discussion, anecdotes, debate, and so forth. I have no stake in the current treatment system for mental health. I do have plenty of people in my life who struggle with mental illness, and a lot of them seem to do better when meds are part of the mix. Others don't. Based on the thread, I'm not alone, and I don't want (or have the right) to do the heavy lifting for all the other people who got lumped in with me or who have commented here or elsewhere about how they feel they can't speak plainly on Metafilter anymore.

I hope the current state of the site is adding value for people's lives and well-being. More and more as it's grown, it seems like just another too-big online space where people self-segregate into teams and try to make the site what they want it to be. Maybe that's good, who knows? It's certainly gotten more inclusive over the years. But it's getting less useful to me as a place for consensus-building or hearing all sides of issues. I mean, I consider myself pretty leftist and progressive based on my generation's standards, and am most comfortable around that ilk, but I do wonder: how many Republicans still exist here? How many cops? How many (insert group that we feel pretty comfortable piling on)? Is this meant to be a safe space from Those People? I spend most of my time IRL and it's a lot easier to deal with the opinions at a dinner table of 4 people with whom I have some existing relationship than it is to navigate what 5 billion Twitter accounts think. I've 100% opted out of Twitter, Reddit, Instragram, Tiktok, everything (except Facebook, which has relatives on it). I like engaging with Metafilter and I learn things. But I worry that a lot of people just lurk and don't speak up because they know they'll get attacked. Sometimes the attacks are valid, sometimes they aren't.
posted by freecellwizard at 12:40 PM on June 2 [5 favorites]


Yes but why is this thread about reducing abelism on metafilter about psychiatric medication? Why is that the part you are engaging with over and over to the exclusion of everything else? Because really truly, this just feels like you trying to get into rehashing something that is a whole entire derail here instead of LISTENING to the actual conversation.

The people in this thread are saying they’re already here on metafilter and feeling excluded from conversations. Why pull out of the woodwork hypothetical people who aren’t speaking up here in this very thread?

It feels as though you are engaging with this thread as though it is AT you, instead of engaging with it as one participant among many and reacting to what is being said that’s not just an entrenched argument about medication and your personal opinions on that. There’s so so much more here.
posted by Bottlecap at 1:00 PM on June 2 [12 favorites]


I too have watched all of the COVID threads go variously poorly and I'm just kind of at a loss for what it would look like if they went well. am really hoping that some of the people who are finding themselves so enraged and hurt by them might be able to say how a "good" COVID thread would look.

So just from my point of view, I don't think there's A perfect COVID post. Literally everyone on Metafilter has been effected by COVID in one way or another, we're all suffering and hurting, but we're all suffering and hurting in different ways that can kind of fit into a few different broad categories, so we all have our own needs around what story we can tell. I think the problem is that we're all trying to tell them all the time in every conversation. My story isn't particularly useful in a thread about grieving lost relatives, or about the challenges faced by people who are still vulnerable have to face. What I think would be the most helpful would be if we all just recognized that none of us have the whole truth of what happened and is happening still and to practice sitting on our hands and really think about if the conversation is about our individual hurts or just reminds us of them. I don't know how we do that, and it's a lot to ask of people who are hurting, and I think that's pretty much all of us one way or another.

I think this thread, link, about a lab researching long haulers went about as well as I could ask for with a general audience. Also Asks about COVID tend to go better as well, because we're all used to the more limited scope of the green.

I occasionally think about the Emotional Labor thread for various reasons, and it's struck me recently that part of what made room for that magic was as much the people who weren't talking that normally would be.
posted by Gygesringtone at 1:12 PM on June 2 [15 favorites]


You all realize that this thread was started because of the hearing voices thread right? And that people are going to that thread and coming here? Read warriorqueen’s framing; I thought the meta was about how we all handle these discussions on the site . This is not specifically a thread where non-disabled people were asked to sit aside; it’s the opposite .
posted by freecellwizard at 4:15 PM on June 2 [4 favorites]


I think we can have both disabled and non-disabled people together in a thread to talk about ableism on the site, as pointed up by the HV thread, and still set aside “what if cops aren’t comfortable here” as outside the scope of this discussion. Maybe ESPECIALLY “what if cops aren’t comfortable here” given how unsafe cops, specifically, often are for disabled people.
posted by Stacey at 4:31 PM on June 2 [27 favorites]


Yeah, no. A "silenced all my life" / "echo chamber" discussion doesn't belong in this thread and it's shitty that freecellwizard thinks that it does. We have that discussion every fifteen minutes in MetaTalk, but you know what it is we don't often have? Threads about ableism. Maybe we could talk about that.
posted by Ivan Fyodorovich at 4:46 PM on June 2 [16 favorites]


So I guess my take is that there’s a place for all of that, but if I wanted to question, for example, whether the program described in the article works for most people, I would try to approach that via research about the program, other people’s experience with the program, and related medical literature, not just dropping scary anecdotes or diagnosing the subject of the profile as a danger based on instinct.

Just wanted to say as a person diagnosed with mental illness and Autism, this take really helps me process and approach the thread personally. I was having trouble balancing personal experience with professional experience related to the subject matter, and honestly I'm going to remember this any time I'm posting/saying something potentially contentious. Thanks Atoxyl
posted by Jarcat at 5:16 PM on June 2 [12 favorites]


I thought the meta was about how we all handle these discussions on the site

I believe the point is that is that talking about how we handle discussions of disability or mental illness on the site is not the same as iterating, reiterating, or relitigating one’s arguments from the “Hearing Voices” thread. Nor the same as open-ended musing about whether MeFi is a big enough tent politically.
posted by atoxyl at 5:33 PM on June 2 [4 favorites]


As I said in my critically acclaimed comment (sorry, thanks Jarcat) earlier, I for one totally understand the desire to share, say, something of your wife’s professional perspective. But I am suggesting that a more constructive thing to do right here would be, well, meta-talk about how we might integrate different kinds of perspectives with mutual respect.
posted by atoxyl at 5:59 PM on June 2 [6 favorites]


Okay, I haven't seen anyone say it specifically, so I will:
...
That was gross as hell.


I'll be specific again: freecellwizard being allowed to repost and relitigate a comment that was deleted from the Hearing Voices thread, with pushback against that reposting and relitigation being deleted here, is also gross as hell.
posted by Etrigan at 6:01 PM on June 2 [13 favorites]


As stated above, I assume that threads on the blue, especially about novel or controversial ideas, can and should provoke spirited discussion, anecdotes, debate, and so forth....But I worry that a lot of people just lurk and don't speak up because they know they'll get attacked. Sometimes the attacks are valid, sometimes they aren't.

I definitely want a community where overall and in general, it feels okay to have discussions. I love the discussions here. It's just hard where discussions resonate or impact people differently.

I think in the early days of the Internet, the assumption was that if you were particularly upset by something, it was entirely on you to manage that and in fact, being too earnest about something was mockworthy.

However now, in 2022, I think we have a greater understanding that it's not always on those who are experiencing the worst impact of something to just manage their feelings. That can represent either people who are experiencing ableism on the site or people who are experiencing a sense of being put down all the time.

Instead, we can collectively look to each other for awareness of the impact of discussion.

That's what I hope for from this thread - that if we understand the impact, we can all, as caring people, make informed decisions about how we approach each other, knowing that that will be imperfect. In this case I started it to talk about the impact of people stumbling onto some things -- and I do believe it is stumbling, not deliberate.

It surprised me completely in HV thread that people were genuinely not seeing the ableism/stigma, so that's really why I started this thread - because it does feel weird to be posting not knowing what the issues are. I know I miss that kind of thing all the time myself. I didn't want to derail that thread any further so here we are.

Again, speaking for me, I find the "people who hear voices and say they are okay just talking to them are Causing Others To Kill People" is - really tiring. It sort of puts me in a box where sharing my experience is considered a) false or b) harmful. I know it too is not strictly about psychosis but I guess I had the background that hearing voices groups are also for multiples - I don't think the article made that clear.

The times I've felt shut down posting because I had stumbled into a sort point, I've also felt that way.

For me, I was hoping that in highlighting areas that resonate hard with people impacted by them, in this case ableism, we would all improve our discussing going forward. I don't see it as an either/or. I see it as a let's chip away at this together by hanging in there and being present. Hopefully that works out.

I certainly will not see Covid discussions in particular the same way again, as well as baseline assumptions in AskMe, and have learned a lot all around already.
posted by warriorqueen at 6:55 PM on June 2 [19 favorites]


At work I often say, "You don't know who's in the room with you," and I think the related assumption that whichever group of people you're talking about is in the discussion here with you is a helpful one. (Yes, even those people whom you think are "too disabled" to be in the room.)

Working from that assumption doesn't negate your personal experience, but it may change the way you frame it or present it. That's a good thing. It *should* change the way you frame it or present it.
posted by lapis at 7:02 PM on June 2 [12 favorites]


This has been upsetting me for the last couple of days. I didn't even realize till just now that my comment got deleted, which is fine, whatever. I think that's the first time that's happened to me; I thought I'd get a memail or something. But there doesn't seem to be anything I can type to get people to say, "Hey man, no big deal. Sorry we picked you out of all the others in that thread and this one and kept addressing everything to you instead of just moving on. I'm sure you meant well and sorry about all your friends who died from mental illness." All the tools I thought I had to communicate don't seem to be landing well (or at all) here. Why would they? I'm just a username in the internet crowd.

It does clarify things; sometimes relationships just end. I am going from this page to the sub page to close my account after 13 years. I have a loving family IRL and my energy is better spent there than typing things here that just rile people up unintentionally and make me feel bad. Please resume your scheduled discussion in progress.
posted by freecellwizard at 9:14 PM on June 2 [4 favorites]


At this point I shouldn't be, but I'm still surprised that comment was deleted. Sorry to see you go, freecellwizard.
posted by A Thousand Baited Hooks at 9:41 PM on June 2 [1 favorite]


I've been holding off on posting anything in this thread. I wanted to wait until I felt like I had the spoons to word things carefully enough that I wouldn't attract anyone's ire for accidental clumsiness and also until I felt like I had the spoons to deal with the consequences if I didn't succeed. What's happened with freecellwizard makes me realise I will never be able to word things carefully enough that I won't offend someone and that I am unlikely to have the spoons to deal with the consequences of offending. And yet here I am posting, mostly to confirm freecellwizard's worry that "a lot of people just lurk and don't speak up because they know they'll get attacked". Yep, that's me!

I already have so much internal conflict around whether I count as "disabled" or not, so much discomfort with claiming that label because I don't think I'm disabled enough. It would be nice to feel like there was a welcoming space where I could explore that and be forgiven for any missteps I make along the way, but MetaFilter clearly is not it.

freecellwizard, I'm sorry to see you go, and I'm sorry about all your friends who died. It sounds like you have a full and rich IRL and I'm glad of it.
posted by Athanassiel at 10:38 PM on June 2 [27 favorites]


I think the deletion of freecellwizard's comment from the HV thread was bad moderation.

I had multiple disagreements with what freecellwizard said in that comment, including and especially a reiteration of a widely held mistaken belief about what happens to the brains of unmedicated schizophrenics over the long haul, but the comment was made with good intentions, and was a perfect setup for really outstanding comments in reply by warriorqueen and others, and without it those excellent comments are less motivated and robbed of some of their force.

The thread is now actually a weaker and far less focused vindication of the rights of people who hear voices than it was when the comment was still up.
posted by jamjam at 11:14 PM on June 2 [6 favorites]


> Sorry we picked you out of all the others in that thread and this one and kept addressing everything to you instead of just moving on.

I’m sorry you felt you needed to leave the site. I do want to correct this again, though. The person who brought anything to do specifically with freecellwizard into this thread was freecellwizard. Feel free to read back and verify that; I know I didn’t trust my memory, with how genuinely aggrieved that are about being targeted.

This thread was framed not to focus on specific posters, and it was doing very well until a specific poster insisted on being focused.
posted by thoroughburro at 4:15 AM on June 3 [11 favorites]


the comment was made with good intentions, and was a perfect setup for really outstanding comments in reply by warriorqueen and others, and without it those excellent comments are less motivated and robbed of some of their force.

We shouldn’t let horrible comments stand because deleting them decontextualizes good responses.
posted by Etrigan at 5:35 AM on June 3 [5 favorites]


Casting something that is misinformed as being horrible is not a helpful descriptor in my opinion, at least not when there aren't other exacerbating factors also present.

In the vast majority of cases here on Mefi, nobody is setting out to be an ass so I'm of the belief that we shouldn't assume that they are even when someone does stick their foot in their mouth. Obviously, doubling down on it and graduating to being aggressively misinformed may warrant reconsideration in individual cases, but even then we all have days where we double down on stupid for whatever reason, so even then I'm inclined to give people here the benefit of the doubt unless it becomes a pattern of behavior.

Thankfully this isn't Twitter or Reddit, where it seems at least half the userbase is there to dunk on people, troll, and otherwise expose their inner asshat.
posted by wierdo at 6:03 AM on June 3 [22 favorites]


> Obviously, doubling down on it and graduating to being aggressively misinformed may warrant reconsideration in individual cases, but even then we all have days where we double down on stupid for whatever reason, so even then I'm inclined to give people here the benefit of the doubt unless it becomes a pattern of behavior.

I very much agree with your take in the general. However, in this instance the misinformed (and resistant to becoming informed, note) aggression, which was directly applicable to various of our members here, was brought into the very thread where we were discussing how to reduce the harm caused by such behavior.

I can scarcely think of a worse thread to double down on medical authority in without any allowance for the other conversants. Maybe if they simultaneously opined that cops feel unwelcome here, these days. I hope cops feel scared of being criticized here as much as we feel scared that cops will murder us.
posted by thoroughburro at 6:38 AM on June 3 [10 favorites]


I read the comment as explaining the reasoning behind the comment in the HV thread and as at least being open to, if not directly inviting, discussion about that reasoning.
posted by wierdo at 7:30 AM on June 3 [10 favorites]


It's a good and important thing for allies to work on how they manage feelings of fragility and defensiveness if they are engaged in a fraught topic.

There are many reasons for why this is good, but the most important reason is so that the ally can get past those feelings and back to the discourse with the people they are trying ally with.

Often, allies need handholding while managing those feelings, and the conversation shifts from being centered on the topic (ableism on MetaFilter) to the managed (or un-managed) feelings of allies who feel defensive or attacked when engaging in the topic. Then we spin out in doing Good Work That Helps Allies and the original point of the discourse is lost or de-emphasized.

I think it would help me a lot as a disabled person and it would help MetaFilter's ableism problem if we could shift some of the resources we pour into the ally-helping-with-feelings-stage and back into whatever discussion led to the hurt-ally-feelings.

It seems to me that this is a bit out of balance in this community.
posted by lazaruslong at 7:47 AM on June 3 [27 favorites]


Casting something that is misinformed as being horrible is not a helpful descriptor in my opinion, at least not when there aren't other exacerbating factors also present.

Take another look at what remains in that thread and tell me that "misinformed" is what might have got a comment deleted.

You know what, never mind. I don't want to contribute further to a derail from "Working together on ableism" into "Assuaging an ally that their feelings are too important to ignore".
posted by Etrigan at 8:06 AM on June 3 [5 favorites]


The dude isn't even on the site anymore, any chance y'all could rerail?
posted by Jarcat at 9:13 AM on June 3 [13 favorites]


Agreed: let's talk about structures. Or, hell, let's talk about de-escalation.

Athanassial, you mention being worried about clumsiness or offending anyone, and about internalized... feeling very badly about claiming the term, because of not being sure if it fits or not. One of the things I have found as I engage further in disability advocacy is that almost everyone I know struggles with that feeling to some extent, even (and often, especially) people who need to use visible and obvious aids. I think in particular because the way that ableism often manifests is by defining "real" disabled people in terms of dramatic challenges that seem unfamiliar and insurmountable, many of us have a hard time applying the same concepts to our own boring, familiar lives. The aids that would be useful are not for us to use; they're for some other, "realer" disabled person to use, and if we use them, we're just faking for some unknowable reason.

Right? At least, that's the narrative that sits in my head; I don't know if it's the narrative in yours.

Again, politically, my position re disability advocacy and ableism is that embracing a wider definition of disability and encouraging people to consider applying concepts from disability advocacy to their own lives helps to broaden access for everyone, no matter what their specific needs are. If we frame conflicts over spaces as incompatible access needs rather than as conflicts of people "stealing" resources they're not "entitled to", I find that it's easier to think about how we can make structural changes to minimize the conflicts at their bases rather than emphasizing questions of hierarchy and who is entitled to what kinds of things. And I find that the outcomes of the first method of solving conflicts wind up being more pleasant for everyone, in the end, than the outcomes for the second one.

So... because that's my standpoint, my impulse is always to invite people to talk more about what has them worried about whether their difficulties are real enough to count. At the same time, I deeply understand the fear of being told that you're being offensive because you don't have the right language to describe the things you're trying to articulate, even if you're trying not to be.

Upthread, I think beaning wandered into just that kind of reaction (probably most strongly from me), right? That kind of thing is exactly what I'd describe as someone who means well, is trying to communicate in good faith and seek connection, and accidentally stumbled into a sore point. The thing is, it's not wrong for them to say, "I'm thinking about the kinds of things where the people I knew with those conditions didn't survive to adulthood, and that shapes the way I automatically approach the conversation." Even if that approach hits sore points, it should be okay to make mistakes without that being a signifier of all-consuming Badness. Yes?

I am often vocally frustrated about the emphasis on vocabulary choice and language when we talk about ableism online, especially because there is a cognitive load on language choice that isn't always easy to negotiate if you're already restricted on mental spoons. On the other hand, speaking for myself, when I hear certain things in this space, I brace and tense up because I've learned to associate those things with being ignored or stigmatized if I continue interacting in the space without heading those off.

How can we be better at communicating those "I feel tense and worried about being erased again in a space theoretically to discuss my perspective" feelings--both to hear them and to express them? I worry about the knock-on effects for other disabled people about being too rigid about acceptable ways to negotiate disability, in no small part because it's not a one-size-fits-all thing. That's kind of the whole point of accommodation: understanding that different challenges and different needs may need different responses. For people who are sort of on the edges of disability discussion as pertains to themselves and their own experiences negotiating the world, how can we make these things less terrifying to comment on?
posted by sciatrix at 12:42 PM on June 3 [26 favorites]


Thank you sciatrix.
posted by 15L06 at 1:19 PM on June 3 [2 favorites]


One step towards avoiding ableism in my mind is to let go of eccentricity as a form of mental illness. People who are different, even in ways that make you uncomfortable, are not necessarily harming anyone. People who are different, and who harm or are harmed, can't be taken an indication of a 100% correlation between the difference and the harm. People notice eccentricity and harm both in conjunction and easily conflate them.

But I also think it becomes important to separate out the ways that some aspects of an issue may be eccentric in an individual, or even within a particular society, rather than having an actual negative effect on anyone.

If people can work to consider when they do that, that would be a step in the right direction.
posted by Chrysopoeia at 9:39 PM on June 3 [2 favorites]


At the risk of sounding a little like a circular firing squad I feel a little uncomfortable with this response, Chrysopoeia, and I'm hoping you can add some depth to your thoughts to help me avoid jumping to conclusions. I agree strongly with the idea of considering eccentricity decoupled from and orthogonal to harmfulness. People who are odd should indeed go ahead and be odd or better yet accepted and destigmatized!

The bit that I'm unclear about and that provoked me is that it seems like mental illness/harmfulness were getting conflated in just that same way we both want to avoid framing eccentricity/mental illness. I deeply apologize if this is a bad read of what you're saying because clearly your sentiment is coming from a place of care. It's just that some of us are mentally ill and not harmful.

As a way of establishing context it's entirely possible I'm being particularly sensitive to this since it speaks toward my own life situation.
posted by majick at 6:18 AM on June 4 [2 favorites]


sciatrix, you made a suggestion up top that I've been thinking about a lot in relation to my own experience on the site: "...structural notes at the beginning of a thread cueing people about what the expectations for a specific thread are can be helpful, although I know those can be anxiety-inducing or dismissive for other people."

I am grateful when I see signposts like this--I see them most frequently here on the gray,* along the lines "this is a space for people affected by (x) to discuss (x); if you're not, please step back in this thread. Also we're not discussing externalities (y and z) because we've already discussed them ad infinitum / they're harmful / this site doesn't do them well." The framing of this thread itself is an excellent and clear example of spelling out expectations.

Sometimes people blow past the signposts, yes, and then it's up to the community or moderators to rerail. And sometimes when more focused guidance is floated as an idea (e.g., in the recent Can we stop directing threads meta), there's some anxiety about the downsides: a wearisome and worrisome need to establish one's bona fides on the topic at hand; worry that humor or differences of opinion or tangentially related comments would be squelched; etc. My personal feeling is that some of these fears are overstated and that some would just take practice to work through.

But mostly I want to note that there's already a part of the site that sets expectations much more clearly, generally with less pushback, and with fewer folks blowing past signposts: AskMe. It's part of the guidelines and culture and usefulness of AskMe to be very clear with constraints in framing. If I'm someone with anxiety about commenting or worry that I'm not qualified enough to join the discussion, I would spend a lot more time on the part of the site where my suggestions are being actively sought and where it's much clearer to me what the rules or requests are. (I am, and I do!) That seems analogous to good accessible design, like curb cuts. Those AskMe guidelines weren't set up in order to make things easier for people with my stripe of neurodivergence, but they really really work for me. Are there tricks or lessons we can mine from the green to use in the more freewheeling discussions elsewhere on the site? Maybe not, but it seems worth asking, as it's work this community has done before, and well.

(* Brainwane described some framing efforts along these lines on the blue in that same "directing threads" meta; relevant here, I think. I acknowledge that a lot of the discussion & heat in that thread was about OP-vs.-commenters providing such direction, which isn't really the question here.)
posted by miles per flower at 8:09 AM on June 4 [18 favorites]


Re: framing: I'm finding myself saddened to compare the framing of this post vs how it went. I had been considering taking warriorqueen up on their offer of this being a space to ask potentially-dumb questions, but now I'm glad I didn't.

To be clear this isn't a "silenced all my life" screed. I'm perfectly comfortable with the notion that some threads aren't for me. But it's frustrating to see an open invitation and then pop open the thread and see that it's absolutely not a space I'd be comfortable participating in from a place of relative ignorance.
posted by dorothy hawk at 4:00 PM on June 4 [21 favorites]


You don’t want to ask “dumb” questions in here because you’re afraid of being attacked for them? Is that it?
posted by lazaruslong at 1:34 AM on June 5


I feel like we’re reading and experiencing different threads. I suppose the fear is that they’ll be treated like freecellwizard, if they ask any questions? But freecellwizard didn’t ask any questions (literally). They reiterated why they think a broad swath of people, including people present in this thread, should be medicated and controlled. They literally never wound up engaging with the topic of ableism in the thread.

I don’t feel like those of us with mental health issues were the ones who derailed a productive thread. What about the only person who came in and explicitly made it about them, in contravention of the framing? No blame for them making things hostile, only for the scary radicals who felt they had to respond to yet another attack?

To be clear, this is not itself meant as an attack! I am legitimately reeling from the gulf of interpretation between myself and others. I feel like I watched something happen, and nobody around me saw it.
posted by thoroughburro at 5:05 AM on June 5 [17 favorites]


I don't think we have to declare a loss, since being aware of how conversations impact each other is kind of the point no matter which perspective people are coming in with.

If you are a person who feels silenced in this thread, I hate that because that definitely was not my personal goal. I would encourage you to risk your feelings and go for it anyway, if you are in a good place with it and feel like it might be ok even if something Goes Wrong(tm).

I'd also really like to ask, I'd actually plead -- since we got there, it wasn't really where I saw this thread going -- what would work to make you feel okay posting, and still leave room for people to response if they do feel that your post contributes to stigma/ableism/negative stereotypes? Like, is there a way to approach it that isn't negatory?

If you're a person who cares, like freecellwizard, and you believe that what you have to say is important to represent people who are not in the conversation but your post is badly impacting others or contributing to stereotypes,** how would you want to know about it? That's not a trick question. (Yes, it is shifting the focus. A new thread might be great but I'm on the 7-day restriction and also am about to feel like I've say waaaaay beyond my piece.)

I'm going to leave this part here because I think it's a really interesting question about community practices. And make a new comment to share a bit as well.

** There is research to support this, some of which was presented in the original HV piece.
posted by warriorqueen at 5:37 AM on June 5 [14 favorites]


Okay so here's my continuation of the above as a person who hears voices and is demonstrably neuroatypical on MRI, and has also had to function in society for 50+ years.

I am interested in how we can flag things for each other. I say that not just as the person who selfishly would love to have a great-if-imperfect conversation.

I say that also as a person who sometimes, even often, is on another side because I am neuroatypical and privileged, and white, and swim in ableist waters and work in a wellness-aligned industry and have all my own points of ignorance.

But also I say that as someone who finds it really hard to read comments that boil down to "we can't let the idea of a peer support group where people advise listening to the voices in their head go unchallenged because murder and rape will result."

I feel like - okay if we have to challenge that "for public safety," then why is it toxic to - challenge the challenge? If we take as a given (which I do) that people in that thread really felt that they had to share their stories in order to Prevent Bad Things or let people Know The Bad, why is my sharing that those stereotypes are also Really Bad -- statistically worse as the article points out -- considered evidence that Metafilter Sucks?

I'm not sure if this helps but I guess if people are saying that we need to all chill out, please make sure you mean all and not just those presenting the majority view.

I say that as a person whose post in that discussion spawned an entire Reddit thread, which has thankfully largely been moderated, which called me both an imaginary friend and a threat to MetaFilter.* I say that as a person who would not have made that post 5 years ago, because I know that I'm identifiable and because at that time, my kids' social lives/playdates were also at risk of my multiplicity 'getting out.'

In other words, I say that as a person who has to cope with a very related feeling every time she expresses her actual lived experience, that what I actually experience in my mind every day is incredibly abnormal and wrong, and yet gets up every morning and has a great life. I love my friends, even those I cannot trust with core information about myself. I self-censure even when someone asks me what my favourite soft drink is.

I kind of sit with that and I think "and really, people aren't willing to hear that there's an impact when they "just ask" if peer support groups where they listen to each other will lead to murder and rape? Like, that's the toxic bit here??

But then I have to recognize that a) we're all in the original society, b) my line is probably not most people's lines and c) actually I feel that way about MetaFilter sometimes too.

So that's why I ask the question above, because I know I personally am glad I didn't conclude years ago when I was in my coming out phase that the best result would be to stop interacting with the human race. I suspect if we find ways to listen to each other -- by which I don't mean just people like me accepting that the conversations will be just as bad here and I ALSO don't mean "if this isn't you don't comment."

* If you're worried about this and have tracked down the thread, I dunno how to help. I've been a privacy officer for 3 separate organizations and have extensive training in online privacy and am a big advocate of it. Plus everyone in my head understands ethics and does not confuse that with decluttering CDs.
posted by warriorqueen at 6:33 AM on June 5 [21 favorites]


I am legitimately reeling from the gulf of interpretation between myself and others.

To kind of use this as a jumping off point:

One thing I've noticed about this thread is that the vast majority of people in it are being so incredibly careful in their wording. I know I spent a lot longer on my two comments than I normally would, because I wanted make it clear that I don't think my experience with COVID gives me conversational priority over others. It was frankly exhausting and I almost didn't post it, and that's as someone who was working WITH the over all mood of the thread. I imagine coming in with something that may change direction could be especially daunting. Also like, the one prominent example of someone who wasn't being careful can make it look like the issue was with their lack of precise phrasing, instead of with the over all content. Like, nobody wants to be the one who steps in it and suddenly becomes the star of a conversation about what not to do. So, I don't know, I don't think it's quite as bewildering as other people do that someone got a "stay out!" read of the conversation here. Which doesn't mean that I agree with that, just that I can see how they got there.

Like, I'm sure none of you meant this, but the next 3 comments after dorthy hawks's could easily be read as an intense combination of "you're wrong" and "explain yourself". From my personal read of this conversation, it's a very thoughtful and kind expression of wanting Metafilter to be BETTER and trying to come up with a strategy to do that. Since I'm in that mode those comments read much differently than if I was in "I need to watch what I say, or else" mode. And that's just a central challenge of text as a communication method, tone's hard, and it's especially hard to switch between what you mean and what other people may think you mean if they're coming at it from a completely different frame of reference.

So I don't know, at some level this may just end up being one of those things where dealing with humans is messy, and there's no perfect system for everyone. It's possible for two people to have needs that can't both be met by the same conversation. All anyone can ask is that, as a group, we try and take turns getting our needs met here. Luckily, there's nothing saying that any one conversation has be THE CANNONICAL CONVERSATION about a topic.

Tangentially, and not directed at anyone specific in this discussion, I want to say if the conversation's with a member of a marginalized group, and is about that group, it's on the non marginalized person to consider things from their point of view. Often time the first step is making yourself listen so you can find out that point of view. As someone who's won most of the privilege lotteries, my choice to sit on my hands and listen more often has contributed to people getting to tell their stories. As a bonus doing that has made my understanding of the world richer, but mostly it's just the right thing to do, and that'd be true even if I didn't learn a thing.
posted by Gygesringtone at 8:40 AM on June 5 [14 favorites]


Well, and also, to build off on what you're saying, Gygesringtone, so much of this topic of ableism generally is so vulnerable for people. Like, I keep turning over and over in my head the thing Athanassial said about wondering about whether the word "disability" can even be said to apply. When you're trying to figure that kind of thing out, it's terrifying to consider, and the rejection for owning the term really is going to be everywhere around you.

*rubs at face* I suppose one of the tension points in any thread that's trying to open space like this is that it's hard to both leave space for messiness and trying to articulate impact points at the same time. I've got two faces when I'm talking about parts of myself that I'm used to people coming in clueless about, right: I have my teacher face, where I have to be in control of myself and put quite a bit of energy into being approachable and welcoming and gently redirect stuff that is ouchy into something that's less... that. And then I have my off-duty face, where I get to be, y'know, a messy person who has feelings talking to peers, who talks with her mouth full and gets frustrated and confuses people's names and has some enormous irrational pet peeves.

The issue is that a thread to Talk About Ableism kind of draws my attention, at least, both in terms of Teacher Mode and in terms of Human Mode. The thing about existing in a space with friends who don't share every kind of marginalization with you is that you can wind up in situations where you're relaxing in Human Mode, say dozing half asleep on your friends' couch, and suddenly that facet of your experience comes up and you can either be shoved into Teacher Mode or you can just be hideously uncomfortable and squash a part of you into a tiny ill-fitting box. Either way, it ain't a comfy way to find connection. So having someone say HEY let's have a chat about the experience of this thing in your friends group naturally summons Human Mode self who wants to talk about how it's tiring and grouch-making to have to do all this teaching all the time, right? But also, it summons people who are feeling shy and anxious and want to learn, and that tends to pull Teaching Mode out of the woodwork, and people being people those things tend to fluctuate sort of unpredictably--particularly for me, and particularly since Teaching Mode requires a lot of emotional control that isn't always easy to produce.

I used to do Q&A with Queers panels in college that were explicitly for people to ask dumb questions they really wanted to know but were too embarrassed to ask, or who didn't want to offend anyone by asking. We used to let folks ask anonymously (often via text) and then people on a panel could answer (or not) as they felt like. If something was plain offensive you could explain why or you could ignore it. Obviously, doing that shit on the internet is going to leave the question-answerers open to some pretty crappy shit from anyone who decides to foul the anonymous pool with questions that are intended to cause harm, but... hell, I don't know, would a pair of spaces for each Mode be useful? If we did a "disabled people talking to one another" thread alongside a "here's a place for people to anonymously drop questions, with disabled users being welcome to answer them or not as they choose in thread?" I don't wish the experience of being a pre-announced panelist on such an open thing on anyone, but I think that something like that could certainly spur some interesting conversations--and the anonymity of askers would probably make it harder for anyone to double down if they then got an answer that they didn't like.
posted by sciatrix at 10:17 AM on June 5 [19 favorites]


I really like the idea of anonymous questions threads accompanying reserved space threads!
posted by thoroughburro at 10:22 AM on June 5 [4 favorites]


Also like, the one prominent example of someone who wasn't being careful can make it look like the issue was with their lack of precise phrasing, instead of with the over all content.

A few unfocused thoughts about the thread and people indicating that it reinforces their sense that it’s intimidating to contribute:

- I think one has to face that people don’t necessarily distinguish “I have to be careful about my content” from “I have to be careful about my wording” as far as the way seeing people get piled on generates a level of anxiety about engaging

- that freecellwizard’s comments were inappropriate for this thread seems way more obvious (i.e. actually signposted) than whether they were appropriate for the original thread. I think one could discuss the moderation of the original thread, but this one was explicitly not about moderation!

- on the other hand maybe sometimes it’s better to let a comment slide than to engage with it, because engaging with a “derail” is a self-fulfilling prophecy?

- My instinct here was to try to “translate,” to meet where I thought the derail was probably coming from and to try to tie back to the sort of thing that I thought the thread was supposed to be about (and to try to explain why some of the content might be offensive). That didn’t really work, as far as getting anybody to reverse the direction they were digging.
posted by atoxyl at 2:22 PM on June 5 [5 favorites]


We can’t address any -ism without discussing that some opinions are harmful and backwards and unhelpful. Abelism can not be changed without people having to sit with the fact that at the very least they don’t need to be saying that kind of shit out loud into the world where the people they’re judging are going to read and be harmed by it.

This isn’t about phrasing things “correctly.” This is about “no sometimes what is being said is uneducated and actively harmful and should be corrected and those attitudes need to change.”

If this isn’t about moderation and is instead about community - which I agree with! - then that also means taking responsibility for it when it turns out we have some abelism that we need to unpack and let go of. The problem was never about phrasing. The problem was about digging in and not being willing to engage with people saying “hey, this is really harmful.”

I agree that it’s scary to confront that we might (do) have opinions and thoughts that when we express them turn out to be hurtful. I have accepted that when I say something ill informed and hurtful that I don’t necessarily get to choose how that’s going to feel when it gets pointed out to me. But if I want to continue doing better by people, I accept that engaging in uncomfortable conversation is part of that. Where I see that it goes wrong is not when things are worded messily, but when someone is convinced that if they just worded something better that the abelist thing they are saying would somehow turn into an acceptable thing to be saying.

Like, there’s not a way to phrase “I would be more comfortable if people like you were locked up” in a way that’s not offensive. Offensive things are offensive.

That’s not someone coming in with questions. That’s someone coming in with a hardened position that people like me do not belong in society. And even then, I think that someone with the opinion that people like me should be in wards or medicated against our will is willing to come in and actually have that conversation and not just entrench entrench entrench, there’s still a way for that to be a product and non-hurtful conversation *for everyone.* Although freecellwizard chose to frame it as “there’s not a way to word this carefully enough” I don’t think people should read that uncritically. Because when someone is saying something offensive, it’s not about how sensitively they frame it. It’s not about messy wording or crafting the right words. It’s that sometimes you have to be able and willing to hear “you have said something offensive.”

And that’s true of abelism, racism, classism, homophobia, transphobia, everything. When you are offensive, the best thing you can hope is that someone will let you know so you can reassess the things that you are believing uncritically. In this case, that hearing voices is more likely to make you violent. That’s simply untrue in every way, and knowing one person it was true of doesn’t mean you Know A Fact. It means you know one person.

I truly hope that people are willing to say things messily. To talk with one another in messy ways. To consider that they are worthy - you are disabled enough to have an opinion about how you like to be treated and the barriers that exist for you! And if you aren’t disabled yet, you are absolutely capable of engaging in conversation with disabled people and even saying offensive things (disabled people also say offensive things!) and then apologizing if someone lets you know and just… changing up the way you interact.

The person who made this high stakes was freecellwizard. And I feel like it’s important to say that plainly. No one asked him to leave. He was certainly asked to engage with the actual conversation rather than to continue reiterating his abelist points over and over again. And he CHOSE to leave rather than to consider that what he was saying was offensive and harmful. That was certainly not my ideal outcome! I would always prefer to have a conversation with someone where there’s something productive and good that comes out of it. But it is not the duty of me to not say something is offensive when it is. That’s how we are where we are. That people make things high stakes instead of just engaging in conversation.

I am a huge advocate for saying things messy. My grammar is mostly shit. I curse. I write too much or not enough. But I also come through all that with this boundless optimism that we’re all meeting each other with integrity and curiosity and compassion.
posted by Bottlecap at 10:13 PM on June 5 [39 favorites]


Following this discussion with interest.

Here's something I've been wondering about, and that keeps popping up. I think it happens in the Hearing Voices discussion.

When people say "Metafilter is bad at..." what does that mean exactly? In most cases, it's not directed at the owner-and-moderators, or is it?

I've seen people say, for example, "Metafilter is historically bad at x issue, here's proof " with a link to a thread where one person in the discussion is being transphobic, or racist, or abelist and everyone else pushes back with varying degrees of strength/harshness/constructive criticism. Which to me, seems proof that Metafilter is pretty good at...

Maybe I'm just uninformed, and missing a lot of offensive stuff in those threads. That's definitely possible.

When people say "Metafilter is bad at x so I'm not even going to discuss that topic" I don't know where that places me. Am I part of the Metafilter that's being intolerant? Is the fact that I have no idea what that person means, proof that I'm part of the problem?

Or does "Metafilter is bad at" mean that individuals who make objectionable comments are allowed to go on doing it because the majority of the community and the moderators turn a blind eye? So it's not really relevant that they are a minority?

Abelism is an area that I agree needs a lot more attention as it's so insidious. A particularly important topic right now as the pandemic has really brought into focus how willing we are to just dismiss the needs of vulnerable people because that's more convenient to us.
posted by Zumbador at 10:22 PM on June 5 [3 favorites]


once again Bottlecap nails what I would say if I had the spoons.

it's so exhausting to constantly get sucked into the meta-conversation for allies in need of comforting and reassurance. here we are again.

allies, you have to get messy to stay an ally. you're gonna fuck up, that's part of learning. i do it all the time in some unlearning-racism and unlearning-us-centrism spaces that i am in. it's how we learn.

i swear to christ for every word i have typed in an online community about my disability or mental health shit, i've typed 10 to comfort a well meaning ally who is afraid they fucked up or offended because they did fuck up and don't know how to handle it.

just get over it! get back to the work! the work is being the ally to your disabled colleagues, not remaining in a perpetual state of needing to be talked down or comforted because hard talks are hard.
posted by lazaruslong at 12:36 AM on June 6 [19 favorites]


Fuck, Bottlecap, you've been incredibly on point in this thread. Yes to absolutely everything you're saying. Thank you for being here and showing up like this.

I do want to be clear, though, about one point: when I'm suggesting that kind of "ask questions, get answers" thread, I'm not necessarily doing it with the growth and education of allies in mind. I'm thinking about such a thread as a place where learning and questioning is a little easier and a little less frightening for, well, the folks who are peering wide eyed at the concept of disability and wondering, is this a thing that could apply to me? Is it okay if I sit here? Can I learn from this to make room for myself? If I do apply this concept to myself, is that offensive? Especially with regard to ableism, I see so many people going "well, I need that aid--I need this assistance--I struggle through that pain--my body just can't be relied on--but that's not really disability, and if I said it was I would be taking away from real disabled people." We internalize a lot of that, and the historical isolation of visibly disabled people from non-disabled people makes the problem worse.

I'll reinvoke the queerness parallels from earlier: I've found that a lot of people who are questioning and who are intensely interested in a topic are coming from a place of shyness and insecurity and wanting to learn without offending. Like... my lived experience is that when you really sit down and look at the people who show up for themselves and hang around under the "questioning" label, or even the "ally" label, fervently interested in discussions but not yet willing to claim them... well, no matter how those people then go on to identify, there's usually a reason that that interest is pulling them back and around to the topic, if you listen. Sometimes we just need a place to talk about things that we're collectively processing without having to take on an Identity about it right away.

I don't necessarily think that a format like this would stop folks who march into a thread about a specific experience and drop all their moral panic-inflected anxieties, right? It might help some people sit with their thoughts, but only the ones who are proactively going out of their ways to listen before they wind up in a conflict. But mostly I think that such a thing would relieve pressure on people who are, by and large, not causing the direct problems in the first place.
posted by sciatrix at 4:58 AM on June 6 [14 favorites]


Especially with regard to ableism, I see so many people going "well, I need that aid--I need this assistance--I struggle through that pain--my body just can't be relied on--but that's not really disability, and if I said it was I would be taking away from real disabled people." We internalize a lot of that, and the historical isolation of visibly disabled people from non-disabled people makes the problem worse.


just want to +1 this as a thing that definitely happens a lot. i remember asking something about an accomodation in school on mefi or ask or something, and mentioning something to the effect of my chronic pain != a disability and someone set me straight and that was very helpful.

despite having chronic pain that interferes with daily life, 3 pretty intense mental health diagnoses that I'm still working on finding the right treatment regimen for, an autoimmune disease that i need quarterly injections to manage AND a recently acquired permanent oromandibular facial dystonia, i didn't self-identify as disabled until like a month or two ago.

the reason i didn't is internalized ableism and i'm ashamed of that -- i now know that i was internally resistant to that label because i think of disabled people as automatically stigmatized and less-than. that really fucking sucks to learn about myself, but i'm grateful to that person on MeFi who validated my chronic pain. that kicked off a snowball that really helped me get my arms around what's going on with my body.

if there's a way i could pay that forward i'd do it in a heartbeat, and the sort of convo you are describing here might be that:

I'm thinking about such a thread as a place where learning and questioning is a little easier and a little less frightening for, well, the folks who are peering wide eyed at the concept of disability and wondering, is this a thing that could apply to me? Is it okay if I sit here? Can I learn from this to make room for myself? If I do apply this concept to myself, is that offensive?

i'd be game to give it a try.

and i also just want to say to anyone who finds themselves thinking some of those questions that sciatrix posted, wondering about their bodies and if disability applies to you, and in need of information or just to ask some questions...you are safe with me, and every single disabled person i know as well. solidarity is a default in so many disabled spaces that i am in...you can ask what you want and i will do my best to help you.
posted by lazaruslong at 5:34 AM on June 6 [9 favorites]


The person who made this high stakes was freecellwizard. And I feel like it’s important to say that plainly. No one asked him to leave. He was certainly asked to engage with the actual conversation

I agree - again I think I was one of the people most clearly trying to offer him a way to engage with the actual conversation and he didn’t respond to any of it - but I’m not dwelling on it because he left. I’m dwelling on it because one of the first issues raised in the thread was people having difficulty navigating unspoken expectations or feeling like the bar is too high for the right sort of engagement. And then after he left a couple of people indicated that the exchange reinforced that feeling. So it still leaves me with a question of - was there a better way to do that?
posted by atoxyl at 7:15 AM on June 6 [5 favorites]


i'm sympathetic to the desire to try and solve for root causes after something undesirable happens (a member leaves) but i have to say that asking this question (is there a better way to do that) is yet again centering the needs of allies to feel comfortable in challenging topics instead of how to reduce ableism on metafilter.

the inital impetus for this thread as described in the op is:

What can we as community members learn from each other and help each other improve about posting and commenting around issues that relate to disabilities/differences?

and the title of the thread is

working together on ableism


so why is it that the conversation is repeatedly being yanked back to answer

how can we make allies more comfortable

-----

maybe bottlecap or sciatrix or some other disabled and engaged person will have the spoons to try answering this question yet again but it's just so fucking exhausting to me personally.
posted by lazaruslong at 7:26 AM on June 6 [8 favorites]


i feel like i'm repeating myself and only being negative so i'm going to make a concrete suggestion:

perhaps allies can make a thread in the grey just for allies where they work on answering these questions for themselves without the presumed labor of disabled mefites on call?

allies could pose questions and discuss among themselves things like:

- 101 level table-setting
- phrasing
- how to manage feelings of defensiveness or fragility when they make a mistake
- how to manage hurt feelings when allies have difficulty navigating unspoken expectations
- how to hop in and get messy and make a mistake and learn instead of holding back because an ally is scared and feels like the bar is too high for the right sort of engagement.

etc

disabled folks with a surplus of spoons could hop in if they feel like helping or answering questions but allies could know that it's safe space to make BIG mistakes and learn, like asking "dumb" questions etc.
posted by lazaruslong at 7:35 AM on June 6 [7 favorites]


What can we as community members learn from each other and help each other improve about posting and commenting around issues that relate to disabilities/differences?

and the title of the thread is

working together on ableism

so why is it that the conversation is repeatedly being yanked back to answer

how can we make allies more comfortable

Possibly because they are tied together? I am struggling to articulate what i mean properly in English, but i feel that telling allies, or would be allies, Go Google this, or, keep your feelings of inadequacy (or fear, insecurity etc) to yourself is very alienating. Human interactions cause emotions, fears and insecurity.

In real life, i live on both sides of this problem. I have mental health issues and physical issues, both combine and make each other worse.
But also i am an ally (i hate that word tbh) to my 13 yr old and my ex. I used to be an ally with my mother until her death 2 yrs ago, and with my younger brother until i realised that i simply had no strenght left, and what little remained i needed for my 13yr old son to advocate for him in the system of public mental health and also just to be his mom.
As a recipient of allyship, i feel often humiliated, misunderstood, angry. As an ally i often feel humiliated, misunderstood and angry.

I have no solution obviously.
posted by 15L06 at 8:17 AM on June 6 [10 favorites]


but i feel that telling allies, or would be allies, Go Google this, or, keep your feelings of inadequacy (or fear, insecurity etc) to yourself is very alienating. Human interactions cause emotions, fears and insecurity.

has this actually happened in this thread?
posted by lazaruslong at 8:20 AM on June 6


PS i like what sciatrix wrote above:
I've found that a lot of people who are questioning and who are intensely interested in a topic are coming from a place of shyness and insecurity and wanting to learn without offending. Like... my lived experience is that when you really sit down and look at the people who show up for themselves and hang around under the "questioning" label, or even the "ally" label, fervently interested in discussions but not yet willing to claim them... well, no matter how those people then go on to identify, there's usually a reason that that interest is pulling them back and around to the topic, if you listen. Sometimes we just need a place to talk about things that we're collectively processing without having to take on an Identity about it right away.
posted by 15L06 at 8:31 AM on June 6 [5 favorites]


But also i am an ally (i hate that word tbh)

thank you for saying this. I too find it rather annoying. I could give reasons but this likely is not the time or place.
posted by philip-random at 8:53 AM on June 6 [4 favorites]


Yeah, I think there’s a little poisoned well going on with the word “ally” because so many people who apply it to themselves are not.

However, as a disabled person I consider it my duty and place to strive to be an ally to all disabled people. And “disability” has got to be one of the biggest umbrella groups out there. I can only speak directly on my own experiences with my own disability. I can’t even speak on the experiences of other people with my disability, although I might have a slightly better understanding than someone who doesn’t share that commonality. But disability impacts everyone in deeply individual ways.

So, in this way, I do think it is correct and right for disabled people to also be in the camp of allies, although I wish there were a better word.

For me, talking about abelism and how to do better is partially about breaking down that wall between “disabled” and “ally” and helping people understand they are both. There is no Other here. And part of that is firmly believing that anyone who considers themselves abled should confront that it’s a temporary position and they are one bad day away from disability. The work I do is for able people, too. Because there is no difference between us except for time. (FWIW, I do not heavily subscribe to the social or medical models of disability. I think they are both inadequate. I would be disabled even in a society that perfectly supported me, AND I would like to be understood as a person just like everyone else who has needs that are unique to me, just like everyone else.)
posted by Bottlecap at 9:22 AM on June 6 [16 favorites]


asking this question (is there a better way to do that) is yet again centering the needs of allies to feel comfortable

That’s specifically not what I meant - see Athanassiel’s comment, and see the comments from Bottlecap and sciatrix (if I recall correctly) early in the thread in which unclear or intimidating community expectations are cited as an accessibility issue. This isn’t about “I think people were too hard on the guy who left” - it’s about feeling a certain irony that people (and not just “allies”) again came away from that exchange with the broad sense that there are too many obstacles to participation.

“Is there a better way to do that?” isn’t a question I feel like I have the answer to, though - as I said I felt like I tried my best - so I’ll leave it there.
posted by atoxyl at 9:27 AM on June 6 [4 favorites]


and not just “allies”

Quotes there because, like - if I am talking about people with a psychiatric diagnosis, I’m part of the group, but if I’m talking about people who have a schizophrenia diagnosis I’m just an ally, right? Disability is not a rare “club” to be part of in some way, but it’s not all exactly the same thing (as some good comments earlier in the thread already pointed out) and individuals may be more insiders to some kinds than others.
posted by atoxyl at 9:41 AM on June 6 [5 favorites]


From sciatrix: I think in particular because the way that ableism often manifests is by defining "real" disabled people in terms of dramatic challenges that seem unfamiliar and insurmountable, many of us have a hard time applying the same concepts to our own boring, familiar lives.

From sciatrix: If I do apply this concept to myself, is that offensive? Especially with regard to ableism, I see so many people going "well, I need that aid--I need this assistance--I struggle through that pain--my body just can't be relied on--but that's not really disability, and if I said it was I would be taking away from real disabled people." We internalize a lot of that, and the historical isolation of visibly disabled people from non-disabled people makes the problem worse.

From lazaruslong: i also just want to say to anyone who finds themselves thinking some of those questions that sciatrix posted, wondering about their bodies and if disability applies to you, and in need of information or just to ask some questions...you are safe with me, and every single disabled person i know as well.

Thank you both. I sometimes wonder whether I belong, and you helped set my mind at ease. I think that people in general struggle with whether they belong, in many contexts.

I am autistic. That mainly manifests as hypersensitivity to sound. I had a couple of outbursts this past weekend because I couldn’t handle the sound.

Disabilities are defined as limitations. Given that I am mainly limited to avoiding noise, I ask myself, “Does that count? Is that enough of a hindrance to matter?”
posted by NotLost at 9:20 PM on June 6 [6 favorites]


To clarify, I had to leave both those environments this weekend.
posted by NotLost at 9:42 PM on June 6 [2 favorites]


i feel you re: sound sensitivity. it's something i struggle with a lot.

used to manifest as misophonia and the sounds of eating was my trigger.

now it's everything, the total sound budget hitting my ears. i finally could afford to invest in a pair of airpod pros that have active noise cancelling -- they help for tasks that can trigger, e.g. putting away dishes (why are dishes the LOUDEST THING EVER?)

also i recently moved from south philly to the netherlands and WOW the reduction in the amount of automobile noise pollution combined with the added white noise of basically constant bird song here has been SO helpful. i've only had rage / crying meltdowns due to sound ONCE in six months which is a huge improvement.
posted by lazaruslong at 1:05 AM on June 7 [8 favorites]


As far as getting back to the original purpose of the thread: I think two leading ideas were framing of FPPs, and some type of Q&A thread(s) on Talk.
posted by NotLost at 7:12 PM on June 7 [1 favorite]


I'm extremely grateful that Bottlecap and others are pointing out that the comments that were criticized were offensive in substance, it wasn't just infelicitous phrasing.

Well-intended? Sure, I think so. But people — including me — will sometimes say very ugly things unknowingly, even with the very best of intentions. Taking criticism because of it and learning from the experience is how we figure this stuff out and, hopefully, not make that mistake again.

It seems incredibly unfair to expect the people who been offended to also be the people expected to react in the "right way" and to ensure the offender is comfortable.
posted by Ivan Fyodorovich at 8:41 PM on June 7 [11 favorites]


I'm arriving wayyy late to this thread, apologies. As the mom of a kid on the spectrum, I wanted to put in a word for being very open and assuming the best when parents post for advice for their kiddos. This is a place to hear a diversity of voices and it is great for parents to hear from adult people with autism. However, it is not useful to anyone (including the child in question) to have aggressive stereotypes thrown around about parents without any basis in fact. Especially since that critique almost always focuses on "moms" for reasons I think we all know. AskMe is HUGE resource for getting good information. Nobody should be shouted down or castigated because they ask about ABA or whatever. That kind of ganging up is more about tribalism than an authentic attempt to provide information and support.
posted by haptic_avenger at 5:10 AM on June 8 [5 favorites]


So: where is the line between lived experience and stereotypes?

Seriously, that's pretty much all I got for that. When I reference particular patterns of behavior from allistic parents of autistic children, I'm referencing observed patterns of behavior from my own experiences: patterns from my own parents, from the parents of friends, from the parents in my spaces, from people I interact with who know I'm autistic, from people I interact with who don't know, from the lived experiences of autistic friends interacting with allistic parents, from--

It's not a flattering portrait. That doesn't mean that all parents are like that, but it does color how braced I am for outrage in the space.

Like: there's a big contention you're making there at the end. "this kind of ganging up is about tribalism." Is it? How do you know?

Critique often references moms; is that about misogyny or is it a fact that for patriarchal reasons women do the majority of caregiving work, and when we talk about the ways in which caregiving and parenting can get toxic, it's kind of unavoidable to find ourselves focusing on women?

How do you know why people are objecting to certain things?
posted by sciatrix at 7:16 AM on June 8 [11 favorites]


So: where is the line between lived experience and stereotypes?

I'm talking specifically about AskMe, where the goal is to provide useful information. Responding to a parent with your thoughts about "all moms of autistic kids are like this" would be stereotyping and not useful. Responding with your lived experience about what therapies worked for you (or your kid! plenty of autistic parents parenting autistic kids) would be useful.

Basically AskMe should not be a venue to propound about your "portrait" of any group of people.

when we talk about the ways in which caregiving and parenting can get toxic, it's kind of unavoidable to find ourselves focusing on women?

I'm not sure how to understand that comment. All I can say is that criticisms of parenting are generally criticisms of mothers, so keep that in mind. Gendered stereotypes absolutely impact how people react to mothers of kids with disabilities - talk to any mom who is the "crazy mom" in the IEP meeting, then her husband says exactly the same thing and everyone nods along ... labels of "toxic" definitely related to gendered view of how it is acceptable for women to express themselves.

How do you know why people are objecting to certain things?

Do you mean ABA? Specifically in the context of AskMe - I think if you're going to be useful in answering a question, it should be clear why you object to a certain thing. If people want to discuss or have a debate about ABA in general, that can be in a different context like an FPP.
posted by haptic_avenger at 8:09 AM on June 8 [2 favorites]


haptic_avenger, while AskMe is not not a topic of this MeTa thread, it is primarily in response to discussion in a post on the blue and some of the ways that got derailed at times. Please take the time to be aware of the context, as this makes your comment read quite differently than perhaps you intended. I think it is important for those of us who are allistic or otherwise neurotypical or otherwise traditionally abled to be aware of in discussions like this to pay extra careful attention to details like context; and to be aware that even though we know and love folks who are neurodivergent or differently abled and may have spent more time thinking about such issues than the average neurotypical or traditionally abled person, we may still have some blind spots, and need to be careful of responding defensively when those are pointed out to us.
posted by eviemath at 8:29 AM on June 8 [6 favorites]


I am a mom of a kid on the spectrum. If I feel a strong need to answer an AskMe about autism from a parent, I usually try to do it by directing the questioner to sites that offer perspectives from autistic adults. I feel a responsibility to amplify those voices because most online sites and organizations only offer parents' perspectives. I haven't noticed any egregious pile-ons of autistic adults trying to shout down or castigate non-autistic parents here on Metafilter.

It's understandable to me if a parent asking about ABA for an autistic child would get a chorus of "NOPE NOPE NOPE" from autistic people on AskMe, because that is actually the right answer. It seems unfair to expect autistic people to be gentle and kind while also trying to dissuade an asker from doing something terrible to their child. If a parent of a non-autistic child came in and asked about whether it was a good idea to behave abusively toward that child, I would hope we wouldn't expect a gentle, kind, affirming discussion that made that parent feel like it was an okay thing. There are some discussions that really shouldn't admit of "diverse perspectives"; whether it's okay to abuse disabled people is one of those in my opinion.
posted by Daily Alice at 8:30 AM on June 8 [22 favorites]


It's understandable to me if a parent asking about ABA for an autistic child would get a chorus of "NOPE NOPE NOPE" from autistic people on AskMe, because that is actually the right answer.

ABA is an accepted therapy covered by insurance, and it's going to be offered to many, many parents of autistic kids, and it is not all abusive. I have no problem with the "NOPE" viewpoint and linking to sources written by autistic adults. I think that's great and I have benefitted from those perspectives myself.

I DO have a problem with pile-ons and shut-downs, when parents (especially those with recently diagnosed kids) need to gather information from lots of different perspectives. Otherwise they'll have no way to distinguish between therapies that harm their kids (not limited to bad ABA of course) and therapies that help their kids.

My overall point here that relates to this discussion (which is how to post about disabilities) is that I don't believe AskMe is a place where a certain dogma is the only viewpoint, and other viewpoints are shouted down.

Please take the time to be aware of the context, as this makes your comment read quite differently than perhaps you intended.

Not sure what you are getting at. I believe AskMe was discussed in other places on the thread. My point is really that certain types of discussion that may be appropriate on an FPP are less appropriate on an AskMe, where the goal is to be useful to a specific person with a specific question.
posted by haptic_avenger at 8:42 AM on June 8


I mean. It used to be medically accepted to do all sorts of things that we now recognize are abusive. Forced sterilization, involuntary psychiatric commitment of women for being “hysterical” or disagreeing with their husbands, electroshock therapy for being gay. None of that is in the distant past - there are living people with such experiences. Some really harmful practices are still common when trans youth or adults seek health care; not to mention the abusive legal restrictions or requirements surrounding trans health care. Kids labeled as disruptive or “defiant” may legally be sent by their parents to outright abusive “schools” (see past Metafilter post on the “troubled teen” industry, such as the one on the Elan School). That ABA is an accepted therapy covered by insurance is not a guarantee that it isn’t also abusive. I would hope, for example, that any parent asking on AskMe if they should send their child to a residential program for troubled teens would get a very strong chorus of discouragement - yes, even though there are no doubt a very small minority of such programs that aren’t outright abusive or kids who have found even some of the abusive programs helpful.
posted by eviemath at 9:01 AM on June 8 [13 favorites]


It is a useful point that technically - and, in my book, ethically - all legal guardians of a child are equally responsible for care decisions made on behalf of the child. That it is common for dads in cis-hetero parenting couples to, by inaction, force moms to be the voice of the parents when it comes to allistic parents speaking about autistic children is something we should acknowledge in discussions such as this, and ensure that when critiquing such parental decisions we place responsibility equally, since that category of oversight also often comes back to bite non-neurotypical moms at least twice as hard, from what I have witnessed of friends’ experiences.
posted by eviemath at 9:07 AM on June 8 [6 favorites]


I think you're just making my point, eviemath. Unless an AskMe parent is literally asking about abusing their child (like, "how hard can I hit my child"), I do not think that we should pile on to parents asking about ABA or any other therapy on AskMe with dogma like "ABA is abusive" and no further information. AskMe is supposed to be about more nuanced discussion than that and we have all the pixels and links to enable that. I hope that's true for any questions on AskMe that touch on disabilities.

Just for the record - the current goals I'm working on with a BCBA for my kid include: washing hair independently, ordering at a restaurant, tolerating water on face to maybe learn to swim to reduce drowning risk. None of this is done with negative reinforcement or in a way that causes any distress. Things I previously worked on were: reduce aggression so child can stay in school. Saying "ABA is abusive" is really no help at all for a parent trying to figure out what appropriate therapies look like, what kind of goals you want, etc etc.
posted by haptic_avenger at 9:17 AM on June 8 [1 favorite]


If members of a marginalized group are telling you something is harmful to them, they're not saying it to punish you for being not in that group. They're telling you that because the thing was harmful to them. Like you'll either listen or not, but this idea that it's tribalism for a bunch of folk with similar experiences to tell you that they all had similar experiences when asked about those experiences is just insulting and shows a deep lack of respect.

I believe you, and others, when they tell me that the expectations put mothers by society are harmful. I also believe sciatrix when they tell me that specific actions and attitudes of allistic parents towards their autistic children are harmful. Both things can be true.
posted by Gygesringtone at 9:45 AM on June 8 [23 favorites]


To reiterate: I'm not at all saying that talking about abusive ABA and the views of some autistic adults is inappropriate for AskMe. What I'm saying is that it is generally unhelpful on an AskMe to just say "that's abusive" without more; and it would also be contrary to the purpose of AskMe to create an environment where MeFi members like me who discuss how behavioral approaches have been successful are accused of being ableist or toxic for doign so.

I also think it's generally against the ethos of AskMe to reflexively attribute bad qualities to the Asker, so no, I do not think it would be appropriate to answer an AskMe from the parent of an autistic child with your negative view about parents in general. That does not help at all.
posted by haptic_avenger at 9:59 AM on June 8 [5 favorites]


Soooo… what you are saying, if I understand it correctly, is that you are unwilling to take the word of a majority of autistic people that some practice is abusive, without making some members of the group that has less societal power and faces significant stigma convince you with some unspecified arguments? Or that you are unwilling to accept others’ experiences as real unless or until you, yourself, feel like you understand them? That would certainly be an example of an ableist way of interacting with a Metafilter thread, when applied to discussions of disability or neuro-atypicality. Good illustration of a pitfall to avoid.
posted by eviemath at 10:19 AM on June 8 [7 favorites]


The implication of that would be that you also disbelieve what your child tells you about their experience whenever it is outside of your own experience and they aren’t able to easily explain it to you?
posted by eviemath at 10:24 AM on June 8 [1 favorite]


Also, just personally, as someone who has a problem with large chunks of text right now (hi Long COVID!), I appreciate short answers mixed in there. I find that helpful. That's why I reacted so strongly to the simplified language thread awhile back, because the idea that information has to include EVERYTHING to be helpful actively makes my life more difficult.

Like, folks process information differently and recognizing that is a big step in helping reduce some forms of ablism.
posted by Gygesringtone at 10:27 AM on June 8 [10 favorites]


For that extra bit of context, I'm coming from primarily the Blue (not Ask) and was the only person commenting here from a specifically autistic position early in the thread. I would generally like to have longer, slower discussions here, actually, so I don't mind about coming in later to a thread, but I was certainly confused about where the comments were coming from.

The thing is, ABA isn't only harmful as a therapeutic approach because it's often punishment-based. It is harmful because it by definition removes the perspective, needs, desires, and personhood of the child themselves from the dialogue between therapist and patient on what the goals of therapy are. It's a therapeutic approach based around maximizing easy management, not about developing skills that allow patients to access broader worlds.

I am very sympathetic to your struggles with your child, and if you are finding something that is working for you to help your child develop self care skills, I am glad to hear it. I also understand that ABA tends to get tacked onto a wide range of therapy approaches because insurance recognizes it, and that this makes it difficult for many parents to figure out which occupational therapy options are both accessible (including financially accessible) and unlikely to abuse their children.

However, I think that the philosophy of ABA, in context of applied behavior analysis, is fundamentally ableist, and I would under no circumstances submit any child of mine to that approach. I think it is ableist because it uses the same techniques we use to effectively manage animals, which is the mindset its roots are deeply entangled with, and I do not believe that treating children in the same ways that we treat animals allows children to practice the skills for autonomy, self-regulation, and boundary-setting (particularly for activities that are sensorily unpleasant) that they will need as adults. At least, they will need those skills if they are ever permitted to exercise autonomy as adults, even with support. The approach and philosophy of ABA trains parents to ignore and even squelch the budding desires for autonomy that any child, allistic or autistic, begins to reach for. It is poisonous.

And I would not mince words about this if I was answering a thread in which a poster was asking about ABA for their child. In fact, the last time this came up for a friend's toddler, I did not mince words with it. I don't know what you are asking me to say here.
posted by sciatrix at 10:30 AM on June 8 [22 favorites]


Soooo… what you are saying, if I understand it correctly, is that you are unwilling to take the word of a majority of autistic people that some practice is abusive, without making some members of the group that has less societal power and faces significant stigma convince you with some unspecified arguments?

No, what I'm saying is that a statement that "ABA is abusive" provides little of value to parents on AskMe because there is no one single thing that is "ABA" that has been ruled to be abusive by a majority of anybody. AskMe is supposed to be about answering questions with nuance, and that's not nuance. If you want to say "repressing stims is abusive," OK, that is getting closer, but then you have to talk about self-harm etc. If you want to say "here are the reflections of an adult who did this particular type of ABA," also good. Getting comments deleted that are supportive of behavioral approaches are not good, or getting into a shouting match or shaming parents is also not good (on AskMe).
posted by haptic_avenger at 10:34 AM on June 8 [1 favorite]


But you don’t see how your original comment, in the context of this thread and it’s previous discussion (which does not include your personal context and Metafilter history, because the rest of us are not privy to your personal thought processes), came across as dismissive of believing autistic people about their own experience? You didn’t include any context about meaning something broader when you mentioned ABA, and you assumed the intentions of other folks, for example.
posted by eviemath at 10:42 AM on June 8


It's a therapeutic approach based around maximizing easy management, not about developing skills that allow patients to access broader worlds.

That is absolutely not true, in my experience. I'm sorry if that's what you experienced. And without more detail about specifically, what you think in behavioral approaches "squelches autonomy," I'm not sure we have any basis for a discussion.

I also note you seem to carve out OT as an acceptable approach ... when my OT is actually the person who first taught me some behavioral approaches.

For the sake of discussion, here's the behavioralist approach I used to teach my child to shower at 8 years old, developed with advice from OT and behavioral psychologist, so he could have the maturity and autonomy to bathe himself at an appropriate age. Previously he only took baths with my supervision and was terrified to get any water near his face.

1. Buy big bag of trinkets that are motivating to my child
2. Tell child we are starting on super fun shower training!
3. Make list of the most incremential steps possible for showering. I think it went something like this:
- put foot in shower stall (water off)
- put foot in shower stall (water on)
- put body in shower stall (water off)
- but body in corner of shower stall (water on)
- let shower hit feet
- let shower hit legs
- let shower hit back
- let shower hit top of head for a second
- let shower hit top of head for count of 3
- let shower hit top of head for count of 5
(and so on until he could tolerate getting his whole head wet)
4. Work down the list a day at a time, with reward for each step
5. Within about 2 weeks, child able to shower himself (albeit not really washing his hair well, but good enough).
posted by haptic_avenger at 10:43 AM on June 8 [2 favorites]


Can we please rerail this discussion?
posted by Etrigan at 10:46 AM on June 8 [13 favorites]


Nobody should be shouted down or castigated because they ask about ABA or whatever.

Nobody* should be systematically denied things that make them safe, or have emotional support and empathy deliberately withheld in order to coerce them into behaving in a manner that someone else finds more acceptable.

*I would like to point out here that I am a person, something ABA doesn't recognise.
posted by ambrosen at 1:05 PM on June 8 [11 favorites]


I think that those of us who are coming from a place of relative privilege in discussions such as this (whether the context be ableism or any other axis of privilege) need to take greater care to avoid responding defensively, to ensure that we understand the context and background of a discussion more fully before jumping in with any comment, to give the benefit of the doubt in proactively or affirmatively believing those who are less privileged in their accounts of their experience or how something affects them (including, eg., whether some common practice is abusive), and to be as clear as we can when expressing our experiences or asking questions. In other words, we should bear a little extra responsibility to keep in mind that, although no one likes being called out, the distress we may feel in having our comments seemingly misinterpreted is likely not at all equivalent to the distress someone with trauma related to the topic of discussion may be experiencing based on our ignorance, assumptions, or lack of generosity in interpreting their words and perspective.

Just in general, if we find ourselves about to complain that we aren’t being heard or that other Mefites are being unfair or un-generous to us, when we are speaking from a position of relative privilege on a topic (even one that affects us or people close to us) we bear a relatively greater responsibility to pause and first double check that we are being at least as fair or generous to others.
posted by eviemath at 1:27 PM on June 8 [15 favorites]


Point: Nobody should be shouted down or castigated because they ask about ABA or whatever.

Counterpoint Nobody* should be systematically denied things that make them safe, or have emotional support and empathy deliberately withheld in order to coerce them into behaving in a manner that someone else finds more acceptable.

I can't quite tell if the counterpoint is an argument for or against Askers being shouted down/castigated.

My read of the original point was not that anyone should be denied an opportunity to express their experience as forcefully as they see fit, but that some space be carved out in the Green for parents to initiate their questions in an environment of respect.
posted by Press Butt.on to Check at 1:37 PM on June 8 [2 favorites]


Does that not already happen on the Green, though? I thought the discussion upthread before this most recent exchange had concluded that people were more careful and generous in interpretation in Ask than in discussions elsewhere on the site.
posted by eviemath at 1:41 PM on June 8 [2 favorites]


The last ABA discussion on Ask that I recall was….it’s been a while, but, ‘heated’ or ‘a shit show’ or ‘comment graveyard’ are terms I would use.
posted by bq at 7:49 PM on June 8 [1 favorite]


Trying to do a search to educate myself about this - you probably aren’t referring to this one, since it seems quite respectful, but I’m on the phone version of the site and the non-Metafilter google search isn’t coming up with others?
posted by eviemath at 8:19 PM on June 8


Maybe ABA should be spun off?
posted by NotLost at 8:22 PM on June 8 [2 favorites]


That is, an ABA discussion has merit, but it is narrower than the original topic of this thread. This thread seems like it gets subsumed by subtopics.
posted by NotLost at 8:24 PM on June 8 [3 favorites]


There are very many extremely good threads on metafilter about ABA. And yet it constantly needs to be relitigated by parents who come in to say that it’s great! Their kid is Good now. And just staunchly refuse to read any studies about how it gives autistic people PTSD. Like literally traumatizes children into obedience. And if we’re on the topic of abelism and how we should listen to the people who are actually disabled, I would love it if we stopped doing this particular dance. Parents wanting easier children coming in to say how they should be allowed to do this thing with an absurdly high chance of giving their child disabling PTSD on top of autism …

I am exhausted. I do not know why this continues to be an acceptable line of conversation on metafilter. I do not understand how it is framed as “shouting down” when people say “that is actually abuse and would not be acceptable for ‘normal’ children.”

Compliance training is bad. It leads to bad outcomes. It is literally saying “I should be allowed to abuse my disabled child and groom them into having no acceptable boundaries rather than taking the time to understand the actual barriers for them.”

(Like showers can be actual sensory hell. Being bribed to do something that is torturous is abusive even if you never hit someone. Being constantly pressured into being Good is setting up terrible power dynamic issues that are life long. Being told that harming yourself is something someone who loves you will do and then praise you for is a set up for abusive relationships throughout your life. I can not believe how many different times and different ways we have to say this.)

Having to debate whether or not something that creates PTSD is acceptable because it makes you easier is so deeply abelist. Disabled people always are expected to be easy at a deep cost to themselves. And one of the costs I would like to stop paying is reading apologia about how it’s ok to give us PTSD as a form of love.
posted by Bottlecap at 1:55 AM on June 9 [23 favorites]


We’ve already had a MetaTalk discussion on ABA as well. That’s not to say we couldn’t have a new one if there’s something new to say, but someone coming in hot with a position that sounds a lot like “but autistic people aren’t doing enough to justify their opinions about their own abuse” doesn’t feel like something we need to dig into right here.

This DOES feel like another example to me of the bigger pattern I see where the problem isn’t someone having an opinion or question that hits some ableist hot buttons, it’s that when that’s pointed out the response isn’t “okay, I’m listening and I’ll think about what you’ve said and see what I can take on board”, it’s digging in for a series of continued arguments and provocations. I think that pattern is the (a?) problem, not any one example of it.

It truly is okay, with many situations and not just ableism, to take critique by more directly affected people seriously and commit to thinking about what you’ve said and learning more even if you don’t necessarily immediately agree that they’re right and you’re wrong, and to leave it at that. I would like would-be allies to do that when this kind of situation arises. Perhaps it would be helpful for those nervous about asking a question to sort of mentally be prepared for that as a potential outcome and know that if it goes that way, that’s okay. I have a world of respect for allies who can listen and learn with a minimum of defensiveness, and it’s something I try (and don’t always succeed) at doing myself in conversations where I am the one out of my depth and learning how to speak and act as an ally.
posted by Stacey at 4:02 AM on June 9 [22 favorites]


Stacey, I remember that ABA discussion.
What do people think of the suggestion made there about having resources at hand to direct people to, for particular hot button topics like this one?
Is it too much of a load on the moderators to expect them to post links to specific resources?
Doesn't metafilter already have pages that set out what is meant by micro aggressions etc.
We could have a "read this first" document about a selection of topics like ABA that people could link to rather than having to restate the same argument over again?
posted by Zumbador at 5:46 AM on June 9 [1 favorite]


This DOES feel like another example to me of the bigger pattern I see where the problem isn’t someone having an opinion or question that hits some ableist hot buttons, it’s that when that’s pointed out the response isn’t “okay, I’m listening and I’ll think about what you’ve said and see what I can take on board”, it’s digging in for a series of continued arguments and provocations. I think that pattern is the (a?) problem, not any one example of it.

yes.

also a frequent corollary to this common pattern (especially in community-scale discourse) is that a meta-conversation about how to avoid this pattern from the start spins up, which focuses efforts on reducing the potential surface area of error for future theoretical button-pushers. usually the types of solutions offered for reducing said surface area consist of shallow behavorial or community culture changes that place most of the burden on the hurt party. basically a special case of what Ivan Fyodorovich said upthread:

It seems incredibly unfair to expect the people who been offended to also be the people expected to react in the "right way" and to ensure the offender is comfortable.

possibly a good way to reduce the total sum of ableism is to try and reshape the pipeline that starts with the mistake.

a common current path could be described like:

1. discussion is happening
2. commenter says something ableist
3. commenter gets pushback for ableist thing
4. commenter digs in and side argument spins up, often subsuming the discussion from (1)
5. at some point during argument begun during (4), meta conversation on how to reduce instances of (4) spins up, further subsuming discussion from (1)
6. possibly someone (like me being an annoying broken record in this thread) tries to offer pushback to (4) and (5) in order to get back to (1)
7. meta conversation about the appropriateness of (6) spins up, usually in defense of the person who did (2) to begin with
8. at this point (1) is distant history, disabled people are rolling eyes so hard at this VERY COMMON DISCURSIVE PATH that they fall outta our heads, repeat ad infinitum

a perhaps better path that would reduce the total sum of ableism on mefi and keep the conversation where it was in the first place might look like:

A. discussion is happening
B. commenter says something ableist
C. commenter gets pushback for ableist thing
D. ideally commenter acknowledges pushback on their own and commits to managing their feelings about the pushback on their own so that the discussion can return to (1/A). If the commenter can't do that, their ability to engage in (4) is removed.

it's clear to me that we can't currently rely on metafilter members avoiding (4-6) since this is a common pattern here. This needs mod intervention, otherwise the burden of labor to try and avoid 4-6 will just keep falling to the aggrieved parties, in this case disabled mefites.

idk. maybe metafilter needs the ability to kick a specific commenter out of a thread entirely, like a ban but just for one thread ID#.
posted by lazaruslong at 5:58 AM on June 9 [10 favorites]


I'm just fucking tired, right? Like, the problem with ABA vs other types of therapy is that the goals aren't set by the patient, because the implicit assumption is that the patient isn't competent to set their own goals. That is fucked up.

And I'm trying, very hard, not to derail into it, but this is such a great object lesson of exactly the same caregiver-focused defensiveness I've been talking about. It's paragraphs of "but my TECHNIQUES for training my child to do a thing the child finds aversive and doesn't see the point of aren't bad!" and I can't figure out how to explain in small words that maybe if being immersed in large bodies of water is aversive then simply avoiding large bodies of water until the kid feels differently is okay. Maybe it's okay to think about different ways to accomplish safety.

Like, I have a friend, her kid got so attached to the family car that she'd melt down and run from social situations and go stare at the car any time they did a public thing. It was inconvenient and bizarre. They printed the kid a blanket with the car on it and encouraged her to take it everywhere, they spent time with the car when the kid was fixated, they went "kid needs the car to feel safe right now, so let's figure out how to help that happen without having to physically be near the car at all times."

Couple years later, kid learns that the car isn't gonna go anywhere, feels safe. Kid learns that if she's upset her parents will comfort her, decides on her own that actually maybe spaces without the car are cool, especially with her blanket with the car on it to remind her. It's not as necessary now as it used to be, partly because the person who decides if they need the blanket is the kid. Her goals and desires matter. She paces her comfort levels as much as humanly possible.

I'm just tired of trying to figure out how to communicate this shit. It's not the techniques you use to accomplish the goals that's the problem. It's the point about who decides what the goals are. Which brings me back to the broader point of this thread: what are our goals? What kinds of discussions do we want to foster here? Who is our audience?
posted by sciatrix at 6:00 AM on June 9 [23 favorites]


Is it too much of a load on the moderators to expect them to post links to specific resources?
Bluntly, yes. Look, we don't have the money on the site right now for 24/7 moderation. We just don't. There's a reason this thread is explicitly structured around community responses, and that's because whatever model the site moves to, we the community need to be taking a more active role in shaping the discussions we want to have.

The mods aren't magic, and they don't always have the lived experience to make the right calls in the right moment, and anyway everyone's opinion of what the right call is differs. We are burning out our mods. They cannot be the fiat solution here.
posted by sciatrix at 6:04 AM on June 9 [14 favorites]


It's hard to figure out a solution that doesn't rely on burdening the people most affected and most qualified on the topic to keep explaining their point of view or compile resources and link to them.

Would it help for me, as an ally, to look out for hot button topics being discussed on Metafilter and call attention to examples of these, and post links to explanations by people more qualified than I am?

I ask because it can feel like a really patronising thing to do, speaking on the behalf of other people.
posted by Zumbador at 6:20 AM on June 9 [1 favorite]


because it can feel like a really patronising thing to do, speaking on the behalf of other people

While i think i completely understand the impulse to offer this, i think you make yourself extremely vulnerable if you do this. I personally would be worried for you being then on the receiving end of the potential anger of those who bring up the hot topic, eg ABA.
posted by 15L06 at 7:35 AM on June 9 [2 favorites]


In a way this ties in with your question above, what does "metafilter does not do x well" mean.
I think this is a good question but also a fraught question.
I personally interpret "metafilter does not do x well with" as a stand-in, a working solution, a shortcut for threads like this, when it is clear that a solution is not imminent but meanwhile posts and comments are made all over the site and subsites.
posted by 15L06 at 7:43 AM on June 9 [2 favorites]


So bringing this back specifically to the question of disability and parenting on AskMe, here are what I think are a few good guidelines, not focused specifically on "ABA."

- The purpose of AskMe is to provide useful information to the asker.
- Useful information requires a diversity of opinion and experience, not a single response. Even though I have a strong blanket belief in certain things, I'm not always right and don't always see the whole picture.
- Useful information generally means being responsive to the question, and having a basis in fact or personal experience to relay.
- Useful information generally does not come in the form of unqualified, polarized statements.
- Useful information generally avoids creating broad "bad" categories and then slotting everything you disagree with into the "bad" category.
- AskMe is not the place to center the *answerers* beliefs or engage in fights between answerers. That's what FPP and Meta are for.
posted by haptic_avenger at 7:58 AM on June 9 [1 favorite]


I would like to invite us to have as respectful and calm discussion of what we as community members can contribute to helping discussion around disability, disease, differences, and neuroatypicality as positive as possible on the site. ... Bring your self-care - if this thread will upset you, it's okay, others who are feeling grounded can have the talk today. From the OP


I TAUGHT my child how to take a shower so he could bathe himself in an age-appropriate way, be independent, and clean. ... I'll say that what absolutely doesn't work (for daily living skills for a kid with autism, or any other parenting issue) is a rigid belief system that has nothing to do with my actual kid and his actual needs. From haptic_avenger

Dear haptic_avenger, please step away from this discussion for a bit. This thread IS NOT about your parenting, although you seem determined to make it about your parenting. Moreover, this thread is primarily about the blue, not AskMe. So as someone who is NOT on the spectrum (but has other issues), please chill and stop the derail. You are not helping this discussion. You are derailing it and distressing actually autistic members. Cut it out. You wanna have this discussion, create a different post. Thank you.
posted by Bella Donna at 8:18 AM on June 9 [21 favorites]


posted by Zumbador:

It's hard to figure out a solution that doesn't rely on burdening the people most affected and most qualified on the topic to keep explaining their point of view or compile resources and link to them.

Would it help for me, as an ally, to look out for hot button topics being discussed on Metafilter and call attention to examples of these, and post links to explanations by people more qualified than I am?


For me at least, this is a fantastic example of what active allyship would look on MetaFilter.

posted by 15L06
While i think i completely understand the impulse to offer this, i think you make yourself extremely vulnerable if you do this. I personally would be worried for you being then on the receiving end of the potential anger of those who bring up the hot topic, eg ABA.

You are 100% correct as well, 15L06. By engaging in this active allyship behavior, Zumbador would be vulnerable to the anger and attacks of folks that push a hot button.

This is a feature though, not a bug. By taking that heat, Zumbador is doing labor that would otherwise either not get done at all (leaving ableism unchallenged, not good) or be done by disabled mefites. Active allyship can look like stepping up and doing the 101 tablesetting and trying to take the obvious ableist grounders when they happen. And it can absolutely look like taking the heat for doing that from people being ableist. This is community service.

also from Zumbador's comment:

I ask because it can feel like a really patronising thing to do, speaking on the behalf of other people

totally understand this too -- and hey, when engaged in active allyship behaviors like we are talking about, it's possible you might screw up. A disabled person feeling patronized by your work is probably among the least likely ways that this could be challenging for you, but it could happen. You also might link some outdated materials when trying to provide resources, or you might mis-speak when trying to explain something that you don't have lived experience with, or some other mistake.

That's also part of active allyship, and is also a feature and not a bug. It means the ally gets to practice getting better at taking these actions, and it means that they get better at managing defensive feelings when they fuck up, and so on. All of these are net wins, even if they can be messy and uncomfortable.
posted by lazaruslong at 8:42 AM on June 9 [12 favorites]


I would only suggest, Zumbador, that in a case like that you hold back a little bit at first. Give people with lived experience a chance to join in and share that if they wish, and then if no one bites or if you think you have a useful resource that touches on an angle not already covered, by all means, a respectful "hey, I don't have personal experience with this but I thought X article or Y previous comment or Z thread we did on this topic last year" could be a welcome addition.

I can also see some ways this could go wrong - for example, I have in the past been the well-intentioned person sharing Autism Speaks links which I would not do now, or just yesterday I saw on another site someone trying to explain that person-first language is always required, which is just not true, but someone without much personal contact with disabled people might very easily think that it is true. So maybe be prepared to have a bit of a thick skin and accept constructive criticism if you do happen to wander into a hot button you weren't prepared for. But I would agree that yes, learning to sit with those experiences and come up with better materials to offer next time could be part of what active allyship looks like.
posted by Stacey at 8:58 AM on June 9 [8 favorites]


So as an example, what about the current discussion going on in Askme about Covid guilt.
I guess this is not a great example for this discussion as it's Ask, where (as far as I know?) people aren't really supposed to be responding to one another's comments or having a discussion.
But anyway, I tried, in my comment there, to at least mention the existence of immunocompromised people (which I'm not).
I imagine that that particular thread is a difficult one for a lot of people to read? Is that an example of abelism on Metafilter?
posted by Zumbador at 9:14 AM on June 9


Mod note: A few comments deleted. Please avoid turning this (or any) thread into a one-on-one discussion. Rather than using this thread to talk about issues that you care about but are not directly related with the thread itself, feel free to create a different post instead.
posted by loup (staff) at 9:48 AM on June 9 [4 favorites]


For what it's worth, I saw and appreciated your comment, Zumbador, although I don't always look at names so I hadn't made the connection that you-in-this-thread were also the person who made the comment I appreciated. That thread has me feeling quite alienated - not in a way I think is specific to Metafilter, just in the general way that it is difficult in American society currently to be a person who has high risk conditions, or cares for people with high risk conditions, and is watching the rest of the world decide they don't really matter enough to take some basic precautions. (In case you end up here, Asker of that question, I do not feel that way about you, but only about some of the responses you got.) Ask probably isn't the place to charge in with a bunch of resource links, as you note, but at least for me that was a small but solid act of allyship and made me feel ever-so-slightly less invisible and othered. So thank you for that.
posted by Stacey at 9:56 AM on June 9 [4 favorites]


I imagine that that particular thread is a difficult one for a lot of people to read? Is that an example of abelism on Metafilter?

Yeah, that was a tough thread for me. There were a lot of great answers there, and I felt like the Asker and so many of the responders were coming from a point of compassion, which was really reassuring. Other responses? Uh, not so much. But that's kind of how it is out there, everywhere, right now. Especially as covid risk is such a personal thing and constantly changing.

I'm still trying to figure out exactly what's ableist and what simply makes me feel sad because from my lived experience, it feels maybe a little careless and entitled. So I have to tread carefully, and a lot of times I just avoid the conversations altogether.
posted by mochapickle at 10:01 AM on June 9 [8 favorites]


I personally interpret "metafilter does not do x well with" as a stand-in, a working solution, a shortcut for threads like this, when it is clear that a solution is not imminent but meanwhile posts and comments are made all over the site and subsites.

I was talking to my sister the other day about all the world's problems and used the term "conflict resolution".

Which you might say, angled things into her wheelhouse. She knows a lot about conflict resolution etc (ie: it's part of her job, her ongoing studies). "Actually," she said ...

(and now I'm paraphrasing)

"The latest thinking seems to be (and I mostly agree with it), that the notion of conflict resolution maybe causes more problems than it resolves in some situations. Or more to the point, we need to accept that certain conflicts are pretty much NEVER going to resolve, certainly not on our particular timelines. They're too complex, too loaded, too everything.

"So what do we do? Well, maybe we get serious about replacing conflict resolution studies and strategies and tactics with ... Conflict Management."

Which a quick Google tells me is definitely a thing.

The basics are pretty simple, I guess. Conflict management is for those situations where the two (or more sides) will pretty much never see eye to eye for reasons oft related to fundamentally different morals and/or principles and (no doubt) experiences (or lack thereof).

Of course, all of that is simple to say ...

None of it is simple to apply, to actually figure out. Which, I figure, is where we find ourselves on all manner of topics both here on MeFi and everywhere else. In olden times, I suppose we could just arm up and bash each other until somebody prevailed but then we (humanity) went and split the atom and so now even unlimited violent imposition of will must now have limits imposed ... or we're all gonna die.

We are where we are. I very much appreciate this discussion. I don't think we're going to resolve anything anytime soon beyond (I hope) figuring out how to overall treat each other better as we continue to ... fumble along.
posted by philip-random at 10:01 AM on June 9 [10 favorites]


I ask because it can feel like a really patronising thing to do, speaking on the behalf of other people.

Not that I'm perfect, but the solution I've found to this is to amplify rather than speak for people. I wish I could remember the context I first heard the term, but you know... brain stuff. Basically my approach is when I'm speaking out to support a group, I quote or otherwise give credit to members of that group who I've learned from. (for example, notice earlier I made sure to explicitly mention sciatrix).

Because, and to bring this conversation around full circle, I think this helps avoid one of the most insidious traps of ablism out there: when people who have experience being near the disability speak as though that gives them experience WITH the disability. It's where this thread's gone off the rails a few times, and where the incident that sparked this discussion happened. It can seem like a subtle difference, but my wife knows what the challenges around having a partner with a chronic illness are, but she doesn't really know what it's like to have it.

It's about who gets to be the protagonist in the stories and who's stuck being a side character.
posted by Gygesringtone at 11:40 AM on June 9 [16 favorites]


Thanks for the advice.
Just spotted another example of what seems to me to be abelism, this thread about the gut biome.
I'm not sure if I would have read the "just eat healthy already!" comments in the same way if I hadn't read the comments here and elsewhere about how that comes across to people who can't easily make that choice.
posted by Zumbador at 9:10 PM on June 9 [5 favorites]


But a question, I'm actually not sure about the etiquette of the various parts of metafilter, when it's acceptable to comment on another person's comment, and when that's considered a derail? And when it would be better to flag a problematic post or comment?
posted by Zumbador at 9:13 PM on June 9 [1 favorite]


OK sorry for the multiple posts but, another question, more generally about how to deal with online conversation.

A lot of my training in how to speak with people online is as a community moderator and as a teacher. For those situations, I have a rule to avoid general statements when I'm *actually*speaking to a particular individual.

It's a bit like management sending out a vague general email berating the entire staff not to smoke in the office toilets, rather than directly speaking to the actual individuals who are, you know, smoking in the office toilets.

But I'm not a moderator or a teacher here so I'm not always sure what the etiquette is about calling people out directly. My gut tells me it's better, because vague, general statements are more likely to be missed by the people they are actually aimed at, and feel like attacks to random others who read them as being aimed at *them* even if they aren't.
posted by Zumbador at 10:47 PM on June 9 [3 favorites]


NB: i should have been more clear before Zumbador -- when I said that's what active allyship could look like on MeFi for me, I should have said on the Blue specifically. Not because i think that model can't work elsewhere on site, but rather because I just don't spend a ton of time on Ask and so I don't know how things have evolved community-norm wise over there.

okay carry on :)
posted by lazaruslong at 12:58 AM on June 10 [1 favorite]


But a question, I'm actually not sure about the etiquette of the various parts of metafilter, when it's acceptable to comment on another person's comment, and when that's considered a derail? And when it would be better to flag a problematic post or comment?

There are no rules it is chaos! Kidding, sort of.

As someone with ASD who loves figuring out the black and white rules of things, in my experience it's more effective to flag and ignore when its problematic. When I've responded to what I perceived as a problematic comment I've consistently felt....well, regret. This is just a data point for me personally, but the anxiety I feel around not knowing the hidden social etiquette I imagine is something that's not just a "me" experience.
posted by Jarcat at 11:15 AM on June 10 [6 favorites]


leads me to believe we could use a new flag reason option:

"is it just me, or?"
posted by philip-random at 1:07 PM on June 10 [9 favorites]


I try not to do the call out specific people/comments thing, but this comment right here is reading as particularly crappy to me. I mean, the thread goes off the rails pretty quickly with some throw away comments, but hey it was a teachable moment and at least one person apologized.

Then this huge "just so" story comes in about how really Nazi Germany is totally the fault of people with neurologic damage from a virus. Which just feels like a someone going out of their way to derail a thread, turn people with neurological damage from a virus into some dangerous other, and dress the whole thing up in some weird mismatched ted-talk quilt of scraps of SCIENCE!. Like, ideally I wouldn't have to start my day reading about how dangerous I am, but if there's not going to be a deletion, can we at least get a mod note re-railing the conversation?

I've flagged it and moved on, but I think there's a legitimate policy discussion to be had about how comments that treats conditions like that as fodder for this sort of "here's there REAL TRUTH" rant, and this seems like a good place to have it.
posted by Gygesringtone at 7:14 AM on June 22 [1 favorite]


Yeah - I actually flagged that thread earlier this morning to ask the mods to re-rail things onto a less ableist track. It's been a mess in there. I considered doing that flag yesterday but frankly did not have the spoons for it; I wish I had, as it just kept on being a mess.
posted by Stacey at 7:24 AM on June 22


Both that thread and the Queen of the World one. I've been arguing in there, would it have been better to say nothing and just flag?
posted by Zumbador at 8:09 AM on June 22


I can delete that comment right now, but is this the best for what's being discussed here and there? (not a gotcha question, I'll do whatever people prefer!)

What happened there is that I saw a flag on that comment juuuust after I went off duty. I thought maybe this is an easy call and I can take care of it quickly, and clock out. But no, I couldn't understand at all how a post about this guy Greitens (sp?) became about Nazi Germany and Covid or some other virus. So that means I would have to read through the whole thread, figure out where that started, follow it down, and if deleting write up a reason short enough to not become another talking point (people angry about / arguing with the reason), but clear enough to say what the problem is, which takes some time to put together ... so it was either spend another 20-30 minutes minimum working, or let some combination of thread responses and the next mod (coming on hours later) sort it out. I saw it had already been responded to, and figured that was a beginning to people in the thread working it out themselves.

That's it. I'm not supposed to do free work; even though sometimes I'll grab an email, or make an easy mod action if I notice something, and I don't add it to the time sheet. But I'm part time. There's one more person part time to cover for me two days a week. There are two full time people, but one of them is also is in charge of handling admin duties. And those two people should also get two days off ... so on some days we have only me working three hours, and one other former staffer occasionally peeking in for a few hours at a later point on those days just in case of some big site blow-up. The reason I'm laying this out, is that I don't want a narrative of "mods don't care" to take hold on this. We are too few to do always-on highly work- and attention-intensive modding, with all the monitoring, and nudging and communicating that involves. The site very simply cannot afford the sort of moderation that we had for many years.

And now I'm writing this, and yes, I'm going to put it on my time sheet, even though it's not actually doing much that's productive for the site, but I've seen the stories that get told about what is in the moderators' heads, and I'd like to avoid much more of that, so am hoping to keep this from becoming something along those lines. I won't be keeping up here until I'm back on duty again, but I will delete that comment if you all think it's best. And the immediate response, if you think that's best.

And god help me, I'm going to make an analogy: to understand a bit, try to imagine you are staffing a 24-7 convenience store. You have basically 3 people, but not actually enough to pay 3 people full time. You also need to take care of stuff like bookkeeping, banking, ordering stock, re-shelving, keeping the place clean, etc. You have one extra person who can keep an eye on things for a few hours a couple of days a week, enough just to basically try to keep someone from coming in and stealing everything. Now how do you arrange that schedule? Also everyone should get at least two days off, and nobody should work unpaid or overtime.

I put it this way just to hopefully make it easier to understand that if things aren't happening in real time, it's almost always going to be because there just isn't a mod working at that point, or there is, but they have their hands full with something else. Also, people complain when things are deleted and there isn't an explanation of what happened ... again, we don't actually have the staff capacity for that. We did once, and we don't now, so some things are just going to be A-B decisions: leave the comment or delete and move on. When I have the time during my shifts, I will do all the reading to figure out what's going on, delete or not and leave a comment about why. If I don't have that kind of time, I have to choose.
posted by taz (staff) at 8:27 AM on June 22 [8 favorites]


Thanks for explaining, taz. Sounds like you're caught between the immovable object and the irresistible force.
Deleting any of the comments without a note doesn't seem like it would be a good idea.
But I'm only peripherally affected by the arguments in those threads (not being disabled, although am neurodivergent) .
posted by Zumbador at 8:48 AM on June 22


I can delete that comment right now, but is this the best for what's being discussed here and there? (not a gotcha question, I'll do whatever people prefer!)

Speaking just for myself, I'd LOVE to see at the very least a quick mod note saying something about how it's not o.k. to blame the problems of society on folks with mental illness/neurological issues. Just some visible pushback from authority would make me feel a lot better. I understand you are all doing the best you can with limited resources, and that's what I would suggest it involves.

I also don't actually think you need that much context about the conversation to understand WHY it's not o.k. to blame NAZI Germany on (unproven) neurological issues that MAY have happened (based only on scientific studies about something else) that MAY (if you're willing to make some assumptions about people with psychosis that don't follow from the linked studies) be linked to a virus.
posted by Gygesringtone at 8:50 AM on June 22 [4 favorites]


Then this huge "just so" story comes in about how really Nazi Germany is totally the fault of people with neurologic damage from a virus.

You are referring to my comment of course.

I happen to have narcolepsy myself, probably because of very low vitamin B12 levels resulting from untreated pernicious anemia.

And you want to tell me that I cannot discuss or even acknowledge potential awful consequences of my own illness??

What could be more ableist than that?

And quite frankly, I find it contemptible and disgusting.
posted by jamjam at 8:52 AM on June 22


Hmm that last sentence doesn't make much sense. I'm trying to say that there's a WHOLE lot of guessing and unfounded assumptions going on to try and set up a group of "others" to blame.
posted by Gygesringtone at 8:52 AM on June 22 [2 favorites]


Thanks, taz. I do understand that mods can't be everywhere all the time and I figured you might not even have seen that thread, which was why I flagged it.

Perhaps others who've been involved with that thread on an ongoing basis can speak to what they'd like to see. Personally, I'd be happy with a mod note to keep focus on people's actions and words rather than medical conditions we don't and can't know about, and to remember that community members with those conditions are here 'in the room' for these conversations. I think going back and trying to pick out all the ableist nonsense in there would probably be more effort than it is worth, and a mod note and perhaps some proactive attention moving forward to the extent possible would be a better use of limited resources.
posted by Stacey at 8:53 AM on June 22 [3 favorites]


For what it's worth, I 100% support your right to talk about your experiences. I draw the line at you diagnosing folks 100 years after the fact and using that to blame them for fascism. ESPECIALLY when the clear parallel you're drawing in the conversation is that people like ME are to blame for the rise of fascism in America. THAT has nothing to do with your experience with narcolepsy.
posted by Gygesringtone at 10:54 AM on June 22 [10 favorites]


I’m confused. Is the claim that you have narcolepsy and you can trace in your personal life how that directly led you to fascism? There’s still a major reasoning error there of over-generalization (anecdote =/= data, etc.), but at least it would make your claims slightly less outrageous.

If the claim is that you have narcolepsy and it hasn’t led you to fascism but you think it could happen for other people with narcolepsy at a statistically higher rate than for the general population, you’re going to have to supply actual data and statistics about the “led to fascism” part of that, which has so far been wildly lacking in your comments, jamjam.

It is, of course, glaringly lacking because there is no such connection. And this is one of those situations where we note that members of a group that is discriminated against or structurally oppressed can also be involved in perpetuating that oppression or discrimination, unfortunately.
posted by eviemath at 11:22 AM on June 22 [6 favorites]


And you want to tell me that I cannot discuss or even acknowledge potential awful consequences of my own illness??

My read on the pushback you're getting is that online discussions of diagnoses often results in people seeing generalizations that are hurtful. The feelings you're having about the pushback are likely similar to what other's were describing feeling upon reading your comment.

People saying they don't like something you said is very different that you not being able to talk about it, but I agree that it can be hurtful to feel like that conversation is difficult or hard to have.
posted by Jarcat at 12:07 PM on June 22


jamjam, I'm giving you a day off. IF you had said "blah, blah, narcolepsy, which I myself have," it would have given people a different frame of reference, though not, probably a different opinion about the content of what you were saying. To come in with guns blazing to call people contemptible for not taking into account information that was never offered is way out of line. This is how people make Metatalk unusable, and Metatalk needs to be usable.
posted by taz (staff) at 12:09 PM on June 22 [6 favorites]


To maybe speak up for jam jam: they did mention that in they suffered from neurological issues in another comments the original thread. So there is some reasonable expectation that that contex could be known. It can hard to switch between conversations and remember what’s said where. But I knew where that was coming from.

Without trying to bring that discussion here: I have no problem with that comment at all because it’s based on their experience. In my mind the only problem is when they expanded beyond that.
posted by Gygesringtone at 2:04 PM on June 22 [3 favorites]


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