December open thread: disability, neurodiversity, and d/Deafness December 6, 2019 1:57 PM   Subscribe

Just as in previous MeTas, this thread is a conversational space for disabled folks and other folks affected by ableism to talk about their experiences on the site. You get to decide whether ableism affects you -- this is not a space focused on gatekeeping. That said, this thread is for everyone to read and for disabled people to (mostly) participate in.

In the past, we have opened these threads by talking about different models of disability and about the needs of neurodivergent people on the site. To open this thread, I'd like to talk about conflicting needs and accommodations.

Lately, I have been sitting with the concept of conflicting needs. Often, when people first start thinking about disability, they think in terms of accommodations for a disabled person. They think about how non-disabled people must strive to accommodate disabled people. But it is quite possible, and common, for the needs of two people with disabilities to conflict, and sometimes to conflict severely. This topic has come up in previous discussions on neurodivergence in particular, which makes sense: the needs of autistic people are often rather notorious for coming into conflict with one another, sometimes in difficult-to-resolve ways. For example, both my partner and I are easily overwhelmed and frightened by loud voices during arguments, but both of us also have poor volume control when we are emotional. These conflicts also apply, however, to other kinds of disability. For example, people with allergies may have difficulties tolerating the service animals that other disabled people rely on. Learning to negotiate conflicting needs can be challenging.

One principle that people use to resolve these conflicts is: be clear about expectations for a given space, so that people can judge their participation accordingly. For example, how can we design a space for the Deaf? We need to consider that sometimes it's hard for Deaf people to interpret feedback about how loud a noise is, so it is sometimes difficult for Deaf people to completely control noise volume. So maybe we hedge it with some expectations for hearing participants. We explicitly say that hearing participants should be aware of sudden loud noises, and that these might be startling to people with PTSD or other sensory disabilities.

Another method that people use to reconcile conflicting needs is to talk carefully about exactly what it is that each person needs from another. Perhaps arguments over text can circumvent problems with controlling the volume of speech.

And sometimes, there is no universally accessible option in one place. Sometimes, the best approach is to create a whole bunch of non-overlapping options. That way, there's something that everyone can participate in, even if it's not possible to make every space accessible to every person.

Perhaps these approaches might be helpful to making MeFi better for everyone.

But we don't need to stick to just this topic. What have you been thinking about or feeling?

This thread is a place for us to talk about what ableism is (explaining models of disability and other useful concepts), and provide a place for people affected by ableism to talk to one another. We're trying to make this a space relatively free of pressure from people who AREN'T hurt by ableism. You get to decide whether ableism affects you. This thread is for everyone to read and for disabled people to (mostly) participate in. We encourage you to talk about yourself and your own experiences. In this thread, please don't talk about other people's imagined experiences.

Some ground rules for this discussion, to help with those goals:

Disabled and neuroatypical people should be talking most of the time. Neurotypical people without disabilities, take a step back and mostly listen.
Some neuroatypical people identify as disabled. Some don't.
Some people prefer person-first (such as "person with autism") or identity-first ("autistic person") language. Please respect others' preferences and let them talk about themselves however is comfortable for them.
You don't need a doctor's diagnosis to identify as disabled.
Different people sometimes have conflicting access needs. Sometimes a group can't accommodate them at the same time.
"I'm here" and "I agree with this (quoted) point" comments are helpful and welcome.
Even more than usual, please try to be gentle with each other and yourself in this thread. (Especially because some of us, because of our disabilities, have a particularly difficult time dealing with expressions of anger.)

This is a followup to previous posts about disability in Metafilter, linked in the first paragraph. As with previous posts, this was drafted on the MeFi wiki. I would like to thank brainwane, who helped write this post and kickstarted this series again.

And -- hi. Glad you're here.
posted by sciatrix to MetaFilter-Related at 1:57 PM (49 comments total) 23 users marked this as a favorite

I would be really grateful if it became site policy to not allow AskMe questions that are basically "diagnose this person you don't know" or "give me permission to attribute this person's assholery to XYZ mental illness".
posted by FirstMateKate at 2:09 PM on December 6, 2019 [34 favorites]

Hey, I didn't think that was aimed at me. This is a space to talk about what you're thinking and feeling, especially with regards to Metafilter itself. It's okay to not feel great right now if that's what is going on with you.

And of course that's not a derail at all. I meant it when I said this ought to be an open thread, not a defined one.
posted by sciatrix at 3:05 PM on December 6, 2019 [5 favorites]

And--oh, hell, I'm trying to aim for a more inclusive definition than just autism here. Everything that falls under the umbrella of disability: physical, mental, all of it. If ableism is hitting you then you belong in this discussion if you want to be here.
posted by sciatrix at 3:11 PM on December 6, 2019

The degree to which Metafilter is NOT a safe space for disabled folks has me spending a lot less time here. Twitter is supposed to be such a trash fire of drama and Naziism, but on my Twitter timeline, I don’t hear “crazy”, “lame”, “moron”, and dozens of other ableist slurs. When I point out obvious ableism (“point me to examples of real people having manic episodes”), I get commiseration and even action rather than radio silence. I’m so tired of trying to make people here (outside this MeTa) see that ableism is even a problem.
posted by epj at 3:25 PM on December 6, 2019 [10 favorites]

I'm also struggling with internal ableism as my body breaks down.

That is so much me. Wasn't going to post here, but... yeah. I hear you.
posted by It's Raining Florence Henderson at 3:25 PM on December 6, 2019 [7 favorites]

sciatrix, thanks for working with me on writing this, and for posting this!

In one of the previous MetaTalk discussions about disability, after ArbitraryAndCapricious mentioned and linked to a new front page post that might go awry, sciatrix said:
I didn't realize until just now how important it feels to me to be able to signal boost to people who have some experience with this shit to go run and look when we talk about this topic. It matters not to be alone.
So I want to encourage you: if you see ableist things, yeah, flag them, the mods want your flags. And also, if you're just wary that a thread might go in an ableist direction, feel free to post about it here and link to it.

And kanata: if you weren't sure whether this MetaTalk discussion meant to invite you, then, in my opinion, that means that sciatrix and I didn't write the post clearly enough. Because you are welcome here. :)
posted by brainwane at 4:12 PM on December 6, 2019 [5 favorites]

Thanks for this. It's cold, and it's dark, and the meds aren't quite right and it's the season of misanthropy. I mean cheer, and familial glad tidings and social obligations. On second thought I think I had it right the first time.

Seriously though - thank you for this. I think I'm about metafiltered-out for today; but not because of this.

Peace, inner and outer, to all and to all a good night.
posted by mce at 4:58 PM on December 6, 2019 [3 favorites]

I have always found MetaFilter to be a safe and welcoming place. I'm autistic and use a wheelchair. I have felt very accepted and rarely have had any bad interactions, except for a few times when I was the one who was too plainspoken in my autistic way.

Sure, there have been lots of opinions expressed that I don't agree with, and many topics I don't give a damn about, but I've always been able to roll my eyes and forget it or break out in a spot of tut-tuttery. I haven't felt compelled to flag more than a few comments.

Words like lame or crazy do not bother me at all but I'm trying to be more sensitive to others who may feel hurt by them. I have inhibited my tendency to blurt out snark, but I don't feel "silenced." Instead interacting with so many smart, compassionate, and funny MeFites has increased my level of socialization in real life. The evolution of my personal growth in relating well to other people has been matched by the increased level of awareness on this site of the many ways we can be more humane to each other. Despite not knowing many of you in real life, the friendship and comradery I experience here makes my life infinitely better. Thank you my MeFriends™
posted by a humble nudibranch at 11:28 PM on December 6, 2019 [21 favorites]

This isn't about the site, but I need to talk about it. I am struggling in a weird limbo in regard to having a disability in a legal sense, I guess? My health has been declining for some time, but I've been on medical leave since February, when I had the flu. By that point, I had already used all my sick and vacation time for the year, so my GP extended the leave so I could see the first of several specialists, which happened to be a sleep specialist, at the end of May. I thought it was going to be a waste of time because I didn't think I have sleep apnea (and I was right, I don't) but to my great surprise, I was told I showed signs of narcolepsy. I did the overnight sleep test, went to the follow up appointment a few weeks later, now it's July and I just need one more test for a formal diagnosis. My August test had to be canceled and we rescheduled for October, and the practice canceled that test on me. At this point, for a number of reasons, I decided to switch from a pulmonary based sleep medicine practice to a neurology based practice where the specific doctor I'll be seeing does research on narcolepsy. But that appointment isn't until... May... next year.

In the meantime, my employer disability insurance has denied my short term (and subsequent long term) disability claim AND my appeal, which I now need to escalate. My GP has prohibited me from driving (and rightly so) until I get this sorted. My GP, at this point, especially given some family history that has since been discovered, is convinced I absolutely do have narcolepsy, but because she's not board certified in sleep medicine, she's not going to give me an official diagnosis. So on paper, I have nothing that would qualify me for any sort of disability resources.

So here is my problem. My in-laws are snowbirds and are in Florida. My parents are leaving January 1st for Myrtle Beach until the end of April. Kid Ruki (who will be on her second day of being 18 at that point and I guess should be called Young Adult Ruki?) is driving down with them, then flying to Florida, and won't be home until the 16th. My husband will be away for most of that time on business.

That's me, mostly entirely alone, without my usual support, unable to drive, unable to use the stove unsupervised (because I've fallen asleep standing up while cooking), without any income, for two weeks. I have no idea what to do. And not a single family member has considered the impact this is going to have on me and offered any help to address it.

I just needed to get that out. I needed to tell people who would understand. Thank you. <3
posted by Ruki at 4:51 AM on December 7, 2019 [29 favorites]

Ruki, maybe you could appeal to the sleep specialist, or have your GP do it for you, telling them of the difficulties being undiagnosed is causing you? Good fortune to you.
posted by Kirth Gerson at 7:59 AM on December 7, 2019 [1 favorite]

oh i'm so glad to see this thread again and so glad to see the people here again <3 kanata, i'm always very happy to see you in a thread, but i understand why the site feels alienating towards you. very relatable

i've been thinking about the area of cluster b PDs, because i'm always interested but especially now that i'm living with my best friend who has bpd and is a fantastic roommate because we're good at accommodating each other's needs. i'm not confident i have the right knowledge or language to talk about my thoughts in a way that feels good on metafilter at large but also in a thread where i don't want to be haphazard. just, that group is just so terribly, obviously understandable to me and it's incredibly demoralizing to run into just gross ableism about them literally everywhere, including therapist resources?

[deleted a bunch of personal life stuff] but mostly i'm doing emotionally great, physically bad, monetarily bad

site-wise, i'm thinking i should have flagged a lot of answers in a recent ask that, to me, went off the rails in an ableist but very mefi way and is making me mad to remember now. i never think of it as an option until [checks] a month later, so i've still never flagged anything, but i should do my part, huh?
posted by gaybobbie at 9:24 AM on December 7, 2019 [9 favorites]

I am so goddamn sick of living on a planet of space aliens. I just want to go home.

I can feel myself slipping into a familiar cycle of embrittlement, exhaustion and rupture that I have followed with so many online communities. (This is not my first MeFi account, although I left the other one behind for non-dramatic reasons.) It's probably time to move on, again, but I'm just so goddamn tired.

I'm sure this isn't an original thought, but I wonder if this cycle is driven by an underlying problem in the design of human language that's been capturing my attention lately -- the built-in (and arguably necessary) presumption that all experiences are ultimately commensurable and interchangeable.

If I was having these interactions in person, it would be easier to capture those little clues, that subtle hardening of the expression in the first half-second of an interaction that says "oh. I see you're not really one of us then." Text strips off these exclusionary markers and, because of those built-in linguistic presumptions, lets me imagine that I can actually be part of some shared conversational journey. Meatspace's exclusion is swift, and often surprisingly unambiguous. Online, the truth comes out more slowly, so that a community I would have just known myself to be excluded from at the outset becomes instead a relationship that gradually breaks down until it cracks.

Anyway, I've been thinking about going back to Wikipedia these days, which happens to be the first place where I noticed myself going through this repetitive cycle of burnout, a decade and mumble ago. Sure Wikipedia's a garbage fire, but what isn't anymore? And however slight they may have been, my contributions to the Wikimedia projects are pretty much the only thing in my life that I can point to and say "here's something I did that has actually provided meaningful benefit to others over time." Pity it's part of the nonprofit-industrial complex and run by a bunch of ableist shitweasels to boot, but there's plenty of work to do that doesn't involve interacting with those folks.

So if I button, I guess I'll probably be over there someplace, editing something.
posted by Not A Thing at 9:55 AM on December 7, 2019 [7 favorites]

Thank you, sciatrix. These threads really are helpful to me.

I'm getting to the point where I probably should have a disabled tag for my car. Like this morning, I was out at the shops and I nearly collapsed, but I managed to make it out to the parking lot and my car and just sit there for a very long time.

I'm 44, and I don't yet use a cane or a walker, but there are some days, especially mornings after treatment, when it could be helpful and maybe save me from exhaustion the rest of the day. For my art class last fall, it was always the day after treatment, first thing in the morning. The location is blocked in by university buildings, and if you don't get there 45 minutes early to grab one of the few available general parking spots, you have to park way over on the side of the museum. It's up a hill, then a bit of a walk, and then down the same hill on the other side. I'd be so exhausted that it took a lot of focus to enjoy the class.

But I'm afraid of taking the space of someone who needs it more than I do, and I'm afraid of nasty notes on my windshield because I have no apparent disability.

I'm increasingly grateful for my friends who ask me how I am. Last month I flew to visit my extended family out of state. I used to love to travel, but now it's exhausting, and I get sick on the plane, and it takes days to recover each way, but it's family so I go. I've been back a few times these past four years or so, only one of my relatives ever asks me how I am, how all this is going, how dialysis treatments are going, what it's like to hang out on the kidney waitlist for years and the uncertainty that surrounds all that.

My mother says they don't ask because they don't want to put me on the spot, and that they always ask her and they've gotten the details already. And I'm usually in a pretty good space mentally with all of this, but it'd be so nice to be asked.
posted by mochapickle at 3:15 PM on December 7, 2019 [11 favorites]

i've been thinking about the area of cluster b PDs, because i'm always interested but especially now that i'm living with my best friend who has bpd and is a fantastic roommate because we're good at accommodating each other's needs. i'm not confident i have the right knowledge or language to talk about my thoughts in a way that feels good on metafilter at large but also in a thread where i don't want to be haphazard. just, that group is just so terribly, obviously understandable to me and it's incredibly demoralizing to run into just gross ableism about them literally everywhere, including therapist resources?

Yeah, I have a lot of unhappy feelings about the PDs generally but about the cluster B PDs in particular. Part of the problem as far as I am concerned is that these diagnoses seem to be less intended to treat the people who receive them and more intended as ways to help people who have suffered various forms of abuse understand and process that abuse. This bleeds into the way that we talk about both these PDs and also the way that we ascribe the features of PD behavior to people who are being described in terms of their abusive behaviors. It can be useful to understand the patterns of abusive behavior, for sure, but I don't think it's necessarily a useful therapeutic category.

BPD in particular is really problematic because its diagnostic criteria are so very much... "has trauma, has no coping skills, probably female." But I think that understanding trauma and understanding the ways that people respond to it are really central to the formation of these PDs, and they're certainly central to treating and supporting people who have them. One of the true crime podcasts I've been mainlining lately keeps saying "hurt people... hurt people," and that is very true of the PDs. But... with stuff like DBT and interventions that actually help to process the trauma involved, someone who is diagnosed with a PD but has developed new coping mechanisms isn't necessarily someone who is going to be abusive to others going forward. So how do you handle that?

I wish we would cleave towards describing people in terms of abusive behaviors rather than trying to identify ways to call people abusive persons. I think the monsterification of abuse makes it harder for people being abused to understand what is happening, and I also think that it makes it easier for bystanders to justify abusive behavior as not really bad enough to warrant intervening. I'm pretty sure it happens in the first place largely because people who are recently traumatized tend to interpret the world in a very black-and-white way--nuance is for people who feel safe--but it's not really helpful in the long run.
posted by sciatrix at 3:15 PM on December 7, 2019 [10 favorites]

I also have a bunch of frustrated feelings towards gatekeeping and the internalized shame that stops people from asking for help because from experience, rejection and minimization is the most common response, and how that just compounds on everything and--god. I'm sorry.

I'm really sorry that you two are struggling so hard right now, Ruki and mochapickle.
posted by sciatrix at 3:24 PM on December 7, 2019 [7 favorites]

I've been here for a few years and split my time between a few online communities. I'm old GenX (1965), on the autism spectrum, have treatment resistant depression and am in recovery from a couple of compulsive behaviors. My sensory and motor issues are getting worse as I age. Whew. That's probably a long enough list.

I feel like there are enough people here who share some or all of my experience and worldview to where I don't often feel alienated here for ableist reasons.

I hope this is not a derail, but I was thinking about how ageism is a specific manifestation of ableism. Again, in the posts I visit, enough older folks show up, or the post and comments are quite understanding of the issues people face as they age. As some folks have already indicated, age interacts with disabilities in various ways: physical deterioration that might not be that big a deal to folks with money and partner/family support can be devastating to those who live on their own and can't afford assistants or home care. How that plays out on Metafilter is something I'm not sure of, but it's an area to be aware of.

If I see something that seems off the beam to me, I call it out. I do need to start flagging, though.
posted by Sheydem-tants at 4:01 PM on December 7, 2019 [9 favorites]

I’m in a place right now that feels more challenging than my baseline. Trying to juggle 1.5 full time jobs with pursuing a bachelors and masters degree, my marriage which is newish, my aging dog best friend who is recently blind (SARDS) and still chasing a confirmed Cushings diagnosis, and an increasingly pressing internal need to express my queerness...

My psychiatrist has concerns about my alcohol use which I didn’t think was super problematic but I guess I get it. We decided to add and start ramping up some Prozac on top of my 450mg bupropion daily meds in order to try and get my baseline anxiety down which will hopefully reduce the urge to drink. I’m basically just so over scheduled and burdened that I’m just sort of letting my body take me from room to room and hope that my brain is up to the task scheduled for me when i get there.

I’m still trying to find an LGBTQ+ therapist here in philly that takes my insurance and has appointments in evenings or weekends. I think that will help. In the meantime I’m just keeping headphones in, trying to avoid misophonia triggers, keeping my fidget toys in my backpack, and trying to just keep my OCD behaviors, anxiety levels, and everything else corralled in service of the day.

I’m exhausted all the time. But it turns out I look pretty good in makeup, and that’s not nothing.
posted by lazaruslong at 4:04 PM on December 7, 2019 [10 favorites]

I have torn my rotator cuff. This should in no way be disabling, but thanks to our pathetic insurance, I am looking at basically never being able to get this fixed. It's not the first time I've had physical restrictions added to my psychological issues, but it's definitely the one that has added the most wide-ranging problems. Everything is either too high or too low to reach. Things that used to be simple, like making coffee, now take a lot of thought, switching things from one hand to another. Sleeping on that side is impossible, except that as part of my anxiety-sleep I constantly turn from side to side, which means that every few minutes I wake up in pain. Arm-flapping and body-hugging to calm myself are suddenly either painful or impossible. Flinching, which I do a lot, often winds up with me in pain. I'm learning to cope, learning what I can do and what I can't, but y'know, I really didn't need one more problem.

Meantime and possibly related, the worrying part of my anxiety disorder has strengthened, a constant gnawing, nagging sense that something is about to go terribly wrong. Is it my shoulder? My teeth? A surprise bill? What could go wrong next? I spend so much of my day cycling through the possibilities. Everyone's saying I'm a grouch, as the worry takes its toll on my mood and outlook. I'm constantly self-monitoring for new symptoms, new problems.

It's not all horror and devastation! For the past few months, I have been much more physically active, exercising most days of the week (compared to prior, when I was very sedentary). I've lost weight, my endurance for activity is much higher. My blood pressure and resting pulse are better. I have been pressing myself to do frightening things. I'm trying. I really am.
posted by mittens at 5:49 PM on December 7, 2019 [9 favorites]

I'm undiagnosed as anything because I've chosen to live outside of the NHS for 20+ years (mostly undiagnosed depression-driven). I've found ASD-centric forums useful whatever my actual status. I've lived alongside schizophrenia in my close family plus separately in latter years deafness and mental decline too.

I don't know what to say, I'm torn between feeling I don't belong in the conversation and wanting to explain, shout, beg for help with my close family member who won't accept or acknowledge the need for it.
posted by I'm always feeling, Blue at 7:03 PM on December 7, 2019 [3 favorites]

Since having a kid that's neurodiverse and seeing what he does over the years and realizing all his quirky behaviors are similar to ones I had growing up, I started asking relatives about me as a kid. My mom a couple years before she died admitted she had me tested for autism as a kid in the 80's because I did a lot of strange things like rocking myself in any chair I sat in, huge social deficits, and odd eating habits. But like most girls in the 80's tested for autism, she said the doctor said I wasn't autistic but just weird.

Fast forward to now though, and I really believe I'm somewhere on the spectrum. So I've been slowly accepting the self-diagnosis because there's so many reasons against and obstacles to getting a professional one - the biggest one being I'm a single mom under a constant threat of eviction and with crippling depression at times because of finances and no medical insurance, and the cost of chasing it is to staggering to think about.

And online there's so much gatekeeping in the autism community against those self diagnosed claiming any sort of, I don't even know what to call it, "disability clout."

But I also use a cane now because of hereditary neuropathy in my legs and feet causing weaknesses in my one leg, and it also feels like in a lot of disability conversations online that I'm not the right kind of disabled to participate in them.

Idk. I just end up feel like I'm unwelcome in any disability discussions, and even feel slightly uncomfortable posting here because my physical disability doesn't affect my time here and my mental and possibly developmental stuff feels like I should be showing a card or something to be able to participate.

I will say, as a member, there are times where I over explain and try to be a straight as possible because I'm always worried I'm not being understood and people assume a tone that's not meant, and I've never figured out if it's just the case of the internet and not seeing people's facial expressions and hearing their voice, or if it's just that weird social divide I always find myself standing on one side of.
posted by 80 Cats in a Dog Suit at 5:11 AM on December 8, 2019 [15 favorites]

Yeah, the thing with autism is that diagnosis access is so stratified! And the way people talk about diagnosis in adults is so frustrating: it's like to be diagnosed as an adult, you must be frozen in early childhood without learning any of the skills you need to survive as a human being. It's as if we insisted that you could only identify dyslexia in people who can't read yet, as if dyslexia only affects young children. (Glumly, I acknowledge that this is absolutely something that less hyperbole and closer to the way many people think about dyslexia than I would like.)

My disability experience of autism isn't actually, at this point, of being excluded from social circles or unable to form strong connections. I am, by this point, pretty good at that: I've worked very hard at forming theories of community, which is one of my perseverations, and I preferentially hang out in places influenced by the nerd culture that is itself relatively influenced by autistic people to begin with. It's not a coincidence that y'all are talking to me on the internet.

Rather, my disability experience of autism is of exhaustion from maintaining my capacity to pass, tension and fear at the consequences of being honest about my thought processes and experiences, and associated compounded issues when the effort I put into all of that erodes my ability to engage in self care. And here's the bitter part: that calculus of self protection from the consequences of openness isn't irrational. I spend a lot of energy figuring out how to pass as a different person because when I fail, I get thrown out of social groups, punished by my supervisors, and isolated from support structures. The stigma heavily compounds the actual inherent issues I grapple with, like eating and drinking regularly or switching focus from one task to another or handling heavy crowds of people.

Often I find people complaining about the "cultural appropriation" of gear, concepts, or ways of doing things that are developed for and by disabled/etc people. Here is the thing: sharing in those things often makes it easier for us all to use them by destigmatizing them and making them, ha, accessible. Gatekeeping about who "counts" as disabled or autistic or any other thing is often justified as a way to protect us, but in reality it mostly serves to isolate people who really are struggling and need community, support, and help. Together, by speaking with one another and engaging in solidarity, we can start to erode the isolation wrought by stigma.

So again: if you are affected by ableism and you are fretting nervously at the door, wondering whether your participation here is an affront to the people who "really" struggle with this marginalization, you are welcome here. Your isolation does not lighten my burden. Your struggle does not trivialize mine.
posted by sciatrix at 7:21 AM on December 8, 2019 [22 favorites]

Often I find people complaining about the "cultural appropriation" of gear, concepts, or ways of doing things that are developed for and by disabled/etc people. Here is the thing: sharing in those things often makes it easier for us all to use them by destigmatizing them and making them, ha, accessible.em

Weighted. Blankets. They have gone from an expensive specialty item to being widely available and sold in department stores and that is an excellent thing. I was able to get one last year, before I even knew I had a sleep disorder, to help with lifelong sensory issues and it's been an absolute game changer.
posted by Ruki at 11:12 AM on December 8, 2019 [12 favorites]

With regards to conflicting access needs, I'm in a bit better spot right now, but used to have problems a bit like what Acheman is describing one post over (Acheman says they are made suicidal by posts about environmental collapse). For me the triggers are hyperbole about the end of the world, and language that dismisses other people's humanity, both of which unfortunately have the ability to send me time-traveling and into extreme mood states.

I understand why people want to talk in these ways -- and also that giving voice to rage, extreme pessimism and despair may be meaningful for other people's mental health too -- but it means I have to stay out of a lot of places online. (Of course this problem happens offline too.)

In a more perfect world maybe there'd be a way online to divide rage/anguishfilter and gentle/cautiouslyoptimisticfilter so people could all get more of what they need.
posted by sockanalia at 12:39 PM on December 8, 2019 [13 favorites]

Hey 80 Cats in a Dog Suit. I want to assure you that some of us people with more obvious disabilities do want to hear about and recognize your struggles. Wheelchair users are kind of the official poster children of disability, but we know damn well that we are not the only "real" disabled people. In fact, I have a high opinion of people who walk with canes because I know it's hard, in some ways much harder than using a wheelchair. I'm the kind of wheelchair user that will open and hold a door open for you.
posted by a humble nudibranch at 1:13 PM on December 8, 2019 [11 favorites]

The ethical consensus of Metafilter is something that I personally find incredibly alienating, and I know that other disabled people I've spoken to feel the same way. I can't count how many AskMe's I've seen where people whose mental illness or other disability makes it difficult for them to find work, or to keep the house clean, or who need a lot of reassurance from those around them, or whose illness doesn't completely resolve despite treatment, are dismissed as leeches with whom it's necessary to cut all ties. People keep repeating that story about the person who's hanging off the bridge on a rope. I think most MeFites instinctively identify with the person crossing the bridge, who just wants to get somewhere else and is frustrated by having someone else's needs, which don't even make sense to them, take away from that. Nobody thinks about what it's like hearing that story if you're one of the people who's spent a lot of your life at the end of a rope somewhere, always just waiting for someone to decide that you're not doing enough to help yourself and they have no choice but to let you plummet.
posted by Acheman at 2:38 PM on December 8, 2019 [18 favorites]

And, to add to that - I recognise that that's definitely a competing access needs thing, bc I know that there are some people whose main struggle in life has been not to let people walk all over them, not to let family members demand that they drop everything to service their needs, etc. Those people really benefit from an atmosphere where it's generally agreed that everyone's primary responsibility is to themself. And some of those people are themselves disabled or neurodivergent. But at the same time, that constant reiteration of the ethics of self-sufficiency inevitably makes spaces unwelcoming-to-hostile to those of us who are only able to survive in a world that recognises and celebrates interdependence.
posted by Acheman at 2:47 PM on December 8, 2019 [13 favorites]

(Acheman's MetaTalk post is How to block a specific post category. And a few other recent MetaTalk posts that are maybe relevant to people in this thread: on how MeFites feel about comments that say things are not getting better and will never get better, a thread where there is some discussion of competing needs, and putting together a group of "parents on Metafilter wrestling with the practical, social, and other challenges of raising kids with mental health challenges or diagnoses".)
posted by brainwane at 4:54 PM on December 8, 2019 [4 favorites]

sciatrix, I also want to ask how you are doing and follow up on the (new?) health issues you mentioned a few months back.

(I know some people would feel picked-on and singled-out-in-a-bad-way if I asked them a follow-up question about something they'd mentioned in a past disability MetaTalk thread, but I get the sense that it probably won't bother you -- please do let me know if I've made the wrong guess.)
posted by brainwane at 4:59 PM on December 8, 2019 [1 favorite]

I just want to say that I'm thinking of all of you and holding you in my heart right now. My own flavors of neuro diversity aren't as prominent right now for whatever reason, better controlled by meds and being very selective about the environments I put myself in, but my intense trauma-related food scarcity and culture of poverty upbringing have been greatly exacerbated by my birthday and the holidays and other triggers. I cried for probably 90 minutes the other night just wishing so hard that I could be "normal" and feeling like I'll never belong in the world of so-called normal people who don't drop their lunch on the floor and go into an immediate and all-encompassing fight or flight response. It resulted in panicking and eating dirty food, something I hadn't done in years. You all being here and being so raw and real is a great comfort to me. Much love.
posted by fairlynearlyready at 5:58 PM on December 8, 2019 [10 favorites]

It doesn't bother me, no.

I'm still juggling way too many health appointments, and I might or might not have mild seizures happening. Hard to say. I've jumped through a whole battery of tests, and I am really just fucking sick of them. As far as anyone can tell my issues with swallowing are proooobably within the normal range and almost definitely not degenerative, which is reassuring. The last nurse practitioner I spoke to couldn't tell me why he was giving me the prescription for anti-seizure meds, and there's a national shortage in the generic for it but my insurance doesn't actually cover the name brand, so I haven't gone on them until someone can sit down and explain to me in more detail why going on it might be helpful and what the theoretical therapeutic benefits are likely to be. (I also need to wrangle the surgeon over the aforementioned other thing; I'm not entirely satisfied that anyone knows what the fuck is going on and/or is actually taking me seriously, and I wound up freezing up and going over-compliant at the last meeting with the surgeon. Joy.)

I am under a tremendous amount of stress and pressure for work reasons on top of every other damned thing, very very tired, and constantly beating myself up for not managing to wrangle applying for jobs, finishing my PhD, juggling all of these health problems, keeping the house neat, handling familial obligations, and maintaining all my social relationships all at once. I have a really strong social network and I'm constantly terrified I'm over-stressing that. And I keep wondering if I'm just making a huge fit over nothing, whether I'm just being fat and lazy, and whether my complaints about my body (generally things I've figured were normal since childhood) are just... shit that's all in my head. Also, I would like to not find myself suddenly dozing off in the afternoon and ideally not soaking the bed with sweaty nightmares at least twice a week. That'd be great, thanks.

I'm not really okay, but I keep saying I am because I literally do not know what else to do or how to handle it. I've got the same scripts in my head about not really being deserving of support and accommodation as anyone else, and I really want to sit down and throw a screaming fit about how it's all not fair, but I don't have any time to really do that: so. Hey. I'm gritting my teeth, trying to figure out how far I can get by working my ass off under honestly not really achievable conditions, and trying to remind myself that the situation in which I find myself is genuinely not fair because the alternative is to blame myself. I'm self-advocating as hard as I dare to.

Also, the holidays are exacerbating everything. At least I'm getting a break from teaching for the moment.
posted by sciatrix at 6:04 PM on December 8, 2019 [10 favorites]

Heh. I am not a positive person. But just because I briefly buttoned mainly so I didn't spew some hateful shit in you know who's way means I spawned a metatalk. Like- the one fucking time I go out of my way to be cheerful... makes me wonder if I just shouldn't embrace my natural fuck-everything-fuck-you-fuck-your-mother attitude. But... that's not good for my overall mental health. SO here I am trying to use my Autistic nature for good for once instead of leaning into the cynicism that a lifetime of being bullied for my condition has taught me... and I'm bullied for the positivity too. It's just bullying all the way down. Like I'm not *mad* about the metatalk- I'm mad it had to happen. But it's like people in it were fucking giving me hagiography that I don't fucking deserve and now I'm worried when I post my usual stuff people are going to complain I lost my *positive* way or something. I guess I'm really nice in person or in letters I suspect and it's like I try to bring my *real* personality over to the blue and *PHHHHHHHHHFTTT* firehose of shit. And now I'm all like what is my real personality? What's a personality? UGH.
posted by Homo neanderthalensis at 9:04 PM on December 8, 2019 [17 favorites]

I have a chronic illness that means I'm sometimes disabled and sometimes not. Lately I am. It sucks so much. Friends who have been friends for years and are more than familiar with my difficulty are still getting sick of me bailing on things at the last minute, which is one of those completely natural consequences of just having no idea how functional I'll be on any given day. I hate it. Hate it. Hate it.

All of that is to say that I have been in a particularly bad place mentally lately, and that has definitely affected how I relate to the site. I go from participating in Ask a lot to just finding it infuriating and wanting to fight with too many answerers even though it's not allowed, especially over stupid ableism shit. And I definitely feel driven to attack people all over the site who I perceive as talking out of their butts when I went to grad school for 9 fucking years and it just about killed me.

I also added my negativity to your positive post, Homo neanderthalensis (I always feel like you deserve italics), and I'm so damn sorry about that.
posted by hydropsyche at 7:51 AM on December 9, 2019 [6 favorites]

I was about to write that I'm glad to see people are participating in the thread. It was at 3 comments when I first saw it and I thought it might have staid that way. But then I thought, people are participating mostly because they are in pain (mental or physical) and struggling with MF or with life in general. So I'm not sure gladness is the right way to go. But I am glad that we have this space to talk. (Yes, I read Pollyanna at an impressionable age.)

I've been thinking about a short-term user of Ask who left the site I think in 2018. The user had been explicit about their disabilities and mental health conditions, and clear that they wanted to use MF both as a resource and to support others by answering questions. The user found it difficult to accept feedback from others and other users evidently found it difficult to understand the user's problems and phrase things in ways that worked. I found it painful to read their questions because there was so clearly a disconnect between what the user wanted and the site's ability to fulfil that. We were not able to start from where this user was. And I've been wondering about something I think I see in answers (may be a confirmation bias). It seems to me that responses often say "you should" or "you must" or "Do". (Partly because questions sometimes say "What should I do?") I would like to see more of us responding tentatively, in a kind of "it sounds as if you're having a problem with … "; "you might want to try … ". (Some of this may also be a US-UK usage thing.) And more of us thinking "do I really understand what this user is asking?" and something about identifying emotional sub-text. Which makes responding much harder I know.

And good wishes to everyone who has posted. kanata, I know you have a very difficult time, and I'm sorry. Ruki, that is awful, and I'm so sorry your family has not been able to consider the situation helpfully, or at all from the sounds of it. Not A Thing, I know that community engagement and burnout of which you speak. mochapickle, one of the hardest things about disability I think is dealing with how it changes, and how people around you respond to that. I'm sorry. I would respond to others specifically but I have run out of spoons for the moment.
posted by paduasoy at 3:45 AM on December 10, 2019 [12 favorites]

I don't know if the user I think of sometimes is the same person (nor does it matter, I suppose) but there was a similar person who comes to mind. I followed their personal blog for a while after they left MeFi and it seemed as if they continued to have that problem in other spaces, until they got frustrated and closed the blog down too. I hope they found a good fit for themselves eventually, and was sorry that we couldn't manage to be that place.

Anyway, I'm still around, still muddling through mental health stuff which is always at its worst for me in November (trauma-versaries, the most fun!) So I'm sort of coming out of the worst of it now, just in time to buckle down for Christmas family stuff. Which will probably be...fine, more or less, depending on how much I am able/willing to play up to Being Intensely Normal for a few days. It's better since I now stay separately from my family but nearby, so I can sort of come and go when things are overwhelming. Still tiring to think about.
posted by Stacey at 5:59 AM on December 10, 2019 [5 favorites]

I think one thing I think about a lot is explicitly how the way moderation here interacts specifically with PTSD, or at least, how it does and has with mine. I’m not sure it’s solveable, but I figured I’d talk about it anyway.

So the way moderation often works because of mod capacity is, one person will say X thing, a bunch of people will get upset and say Y thing, which is often mean or aggressive, and the mods will be like “this is a trash fire, we are deleting comment X because it obviously is getting people reacting badly and should have anticipated that people would react badly to it (read the room).” The deletion reason will usually be to the initial commentator.

Now, that has a lot of problems of assuming people who live in very different cultural contexts and with neurodiversity can all tell what’s going to provoke a reaction, but beyond that, it causes a situation where things are being said that feel harmful and even verbally abusive, but the only thing that’s said by the community enforcers is that you shouldn’t have started talking about whatever it was in the first place, with the implication that you deserved the terrible things that are being said to you and about you. It’s extremely rare that I see notes like “This is clearly something Metafilter isn’t capable of doing well, but this kind of mean spiritedness is also inappropriate for the community.” Or “It looks like you’ve been commenting negatively about this specific commenter a lot in kind of a pointed way. This isn’t what meta filter is for”. And if you get deleted too often, there’s the possibility of a ban - bans right now are at the personal decision of the moderator, rather than being about violating clear and explicit rules.

So as it is I always feel paralyzed whenever something is deleted in that kind of situation, because it feels like the mods, who control access to the community, could take it away at any moment for any reason with little warning and no ability for you even to say goodbye to people you’ve been interacting with for years. And it makes me super agitated and focused on the site, in a way that is really awful. It makes me engage less overall, that fear that there is no way to check to see if you’re right about.
posted by corb at 12:02 PM on December 10, 2019 [12 favorites]

Hi, I’m here, though I haven’t read through the thread fully. I realised lately that I really have some trauma to deal with over the ASD assessment I had a few years ago (it didn’t lead to a diagnosis, and it took almost another year before I got diagnosed with ADHD). I tried to meet a friend tonight after her own assessment for ASD and ended up breaking down in tears before the first sentence was out of her mouth. She ended up comforting me. I feel ashamed and full of self-loathing and tbh I’m writing this because I can’t send her another text apologising for making things all about me when she has actual, real problems, even beyond the question of how much autism has affected her life.

I’m sorry for dumping this on you all, MeFi. My therapist agrees that the assessment was traumatic for me but her approach to dealing with it seems to consist of reiterating that it’s a good thing I’m not autistic and moving quickly on to addressing my perfectionism instead. I can’t wait to be less of an emotional mess but I can’t really see a clear path to getting there yet.
posted by daisyk at 1:11 PM on December 10, 2019 [9 favorites]

Huh. I hadn't considered that interpretation of deleting conflicts. I think about deleting as being largely about allowing someone who does say something that kicks off a lot of aggressive pushback to save face, honestly--the thing that upset many other people isn't still sitting out and incurring further aggression, and you can pause and breathe and figure out how to re-regulate. Especially for cases where someone is coming in a different cultural context or dealing with misreading of social situations, I think it's not necessarily less harmful for someone who has blundered to have the comments left up so that people keep repeatedly coming in and feeling like they need to push back.

I also am not sure I assume the deletion and the ban things are directly related to one another, and I don't necessarily think that clear rules are likely to fix that terrifying anxiety--in part because... look, I've been ejected from a community I cared deeply about with very little warning. I couldn't even see the conversations I used to have anymore. There were rules there! But they weren't followed, based on the specifics of the situation and discussions behind the scenes I didn't have any access to. I've also been shaped by other forum cultures where you had formal rules that were not, in practice, uniformly followed--in part because human interactions are very hard to uniformly and fairly categorize, and in part because the mods were afraid of conflict and making the wrong decision--and those can be really toxic. The thing is, erasing the appearance of conflict without addressing the underlying issues can cause resentment and frustration to fester under the surface, like an abscess. If many people are angry and mods prevent people from saying or expressing open anger or frustration but don't resolve the underlying conflict in their roles as authority figures, rifts build up that are way, way more dangerous than allowing people to express frustration in public.

And the other thing I am thinking about is that often the really aggressive responses happen because several people find that their trauma has been casually minimized or smacked, and moderators need to be able to work out how to balance a strong community response without exacerbating the trauma of everyone involved. I have no idea how to fix that, either.
posted by sciatrix at 1:20 PM on December 10, 2019 [2 favorites]

corb, i feel like i've also seen threads go that way where abusive pushback doesn't get reprimanded, and it is offputting even not being the one it's aimed at. i can see how that would be an anxious-making experience.
posted by gaybobbie at 1:39 PM on December 10, 2019 [2 favorites]

I think that I was kind of following the same user of ask that you two are mentioning. I worried about that user a lot and wished that they were able to stay. I also followed their blog for a while until they closed it and since then I haven't heard or seen them anywhere. I had a lot of compassion for that user and often thought of reaching out to them but ended up not having the emotional energy to spare and so I didn't. Sometimes I still wish I had.
posted by fairlynearlyready at 6:26 PM on December 10, 2019 [3 favorites]

I would love it if MeFites didn't say that other posters' brains were "broken." I would also love it if people didn't let those statements pass without comment, let alone favorite them.
posted by PMdixon at 7:35 AM on December 13, 2019 [3 favorites]

kanata: You know those coily keychains, like old-timey phone cords, that are supposed to let you wear your keys around your wrist? I attach one of those to the handle end of my cane. That way, if I let go of it, the cane doesn't fall, just sort of dangles from my wrist.

With practice, I've learned to sort of... flip my wrist, to pull the cane handle back into my hand once it's dangling, rather than fumble for it with my other hand, so the whole thing looks more like a practiced dance maneuver than disabled-person-with-cane, which is honestly helpful to my ego. But your mileage may vary.

As for the disabled parking: I never, ever, ever get out of the car without using my cane. Even if I don't think I need it. Having and using the cane signals disability in a way that pretty much goes unchallenged despite the blue mohawk I wear (because don't'cha know, disabled people aren't supposed to have funky hair). Yeah, it's a load of ableist bullcrap, but if people are going to carry around ableist bullcrap, then I am bloody well going to unapologetically use that in my favor, because life is already hard enough and I will take any sliver of advantage I can get.

Anyhow, that's how I deal with my stuff. I hope nothing about my delivery here rubs anyone the wrong way, but this is how I own and deal with my slowly increasing disability, so there ya go.
posted by WaywardPlane at 5:45 PM on December 13, 2019 [7 favorites]

I would love it if MeFites didn't say that other posters' brains were "broken." I would also love it if people didn't let those statements pass without comment, let alone favorite them.

Just in case my comment in the other thread was missed - I think it's totally fair to ask that people not import that meme as clearly at least one person has already found it hurtful. But I think it is likely that the person who said it and the people who faved it simply failed to consider that this idiom - frequently used elsewhere more along the lines of "the internet has broken all of our brains" rather than characterizing individuals as mentally defective - might translate poorly.
posted by atoxyl at 12:00 PM on December 15, 2019

The Front Page Post thread in which there are comments about brains being "broken," and about whether that's an okay thing to say about someone else, is "What harm can it do."
posted by brainwane at 6:01 AM on December 16, 2019

Rather than posting the same two long paragraphs again, I will just say that the "broken" comment managed to land very squarely on one of the uglier stories I tell myself about myself, that detail was completely unobvious to anyone not me because I made sure not to say it, and I understand that no malice was meant.
posted by PMdixon at 8:42 AM on December 17, 2019 [2 favorites]

In the "conflicting needs and accommodations" category, I was thinking of something sciatrix wrote back in August:
.... I want to point out that this is a place where needs/wants are conflicting a little bit with respect to both disability and neurodiversity. (My preferences are usually to move fast-fast-fast and be super-sure I'm understood and to throw communication down on the page at high volume, and keeping that in check takes cognitive effort and time... but then again, so does processing all those words I'm slapping down, and those needs aren't always compatible for everyone.)
Sometimes it's hard for me to be concise, and I know that my unedited writing style is on the wordy side. So I'm working on brevity. And I'm working on noticing when I really do want to write at length, and then structuring for skimmability. Boldface for key words, short paragraphs, clear explicit structures (such as subheadings), that sort of thing -- they seem helpful.

But when I read or write that kind of accessible, skimmable prose, I come across my own reflexive judgment that says: that looks so corporate, or like a standardized textbook, or like an advertisement, like a self-help book trying to trick people into something. And I get a bit self-conscious, because I don't see many other MetaFilter comments that are structured in that kind of conscious way.
posted by brainwane at 7:55 PM on December 20, 2019 [4 favorites]

brainwane, i'm coming from the opposite direction where my natural way of speaking/writing is half-formed sentences that also trail off and just forgetting whole words and having funky grammar. i try to make sure i'm writing legibly and expanding my ideas into complete and contextualized sentences on metafilter, which takes attention to notice and a lot of editing. it's very common that i spend upwards of an hour or two trying to get it right, which is why i skip commenting most of the time. i'm also trying to remember other accessibility things, like link etiquette and such.

i definitely appreciate the people i see making similar efforts to be accessible when i notice it, because it makes the post a treat to read, and i often note when they've done something nice with their writing so i can use it for my comments. but i do get embarrassed that it takes so much work for me to write a single comment, which doesn't seem shared with most other users.

i also have my own fears about coming off inauthentic or, like ... cheery robot voice, and it is partly because my words have to be so carefully chosen when i actually want to participate. that isn't something i'd connected to the fact that i'm adapting to my speech issues till now, which puts me a little bit at ease about it, at least!
posted by gaybobbie at 10:15 AM on December 21, 2019 [5 favorites]

Hi everyone. Just wanted to say that I'm thinking of all of you today and tomorrow and hoping that you are connecting with people that love you. Sending all my warmth and good thoughts to each of you.
posted by fairlynearlyready at 10:07 AM on December 24, 2019 [7 favorites]

I appreciate the kind thoughts, fairlynearlyready, and the similar-from-another-kind-of-experience perspective, gaybobbie.

I started a draft for a January open MetaTalk thread on the wiki, in case anyone would like to join in, or has something they would like to have spotlighted as a focus for the next one.
posted by brainwane at 9:48 PM on December 27, 2019 [2 favorites]

MetaFilter is hiring a new part-time moderator:

We especially encourage people of color, women, sexual and gender minorities, people with disabilities, and members of other marginalized or underrepresented groups to apply.
posted by brainwane at 10:19 AM on January 6, 2020 [1 favorite]

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