Disability/ableism thread: access intimacy, taking care of each other January 21, 2020 1:18 PM   Subscribe

Like previous MeTas, this thread is a space for people affected by ableism to converse, about experiences on and off the site. 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.

A few threads ago, gaybobbie mentioned the term "access intimacy". As Mia Mingus describes,
Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level.
Does access intimacy make sense to you? Do you have reactions or feelings about it to share? Or perhaps experiences of growing and providing it, as well as receiving it?

Relatedly: I have thought, over and over again, about some comments you have made in previous threads. I've remembered the end of a comment Marie Mon Dieu made a few threads back, about a kind stranger. I've reflected on something mittens wrote, about guarding others from one's own reactions: "But what am I going to do with all this righteous anger? What can I do with all this hate?" Both of those are about how we can be kind to each other. And they're about the thoughtful choices of being kind to a particular person or group.

Recently I came across the philosophical movement called "the ethics of care", which (per Sophie Bourgault) is
an ethics that gives pride of place to the fundamental vulnerability and interdependence that are constitutive of the human being. It is also an ethics that attaches great weight to particulars, contexts, and relationships in moral and political judgment. It is an ethics that places human needs (rather than rights) at the forefront of its account of socio-political life, and it is an ethics that is primarily concerned (as Carol Gilligan’s early work showed well) with answering the following question: “how should I respond?” (instead of ‘what is right?’).
Here's another way of thinking about it. Carol Gilligan defines "the ethics of care":
As an ethic grounded in voice and relationships, in the importance of everyone having a voice, being listened to carefully (in their own right and on their own terms) and heard with respect. An ethics of care directs our attention to the need for responsiveness in relationships (paying attention, listening, responding) and to the costs of losing connection with oneself or with others. Its logic is inductive, contextual, psychological, rather than deductive or mathematical.
Is this a useful approach, in particular, to people affected by ableism? I think it might be, in particular because of a point colorblock sock stated in a previous thread:
Disabled people are not burdens. People who need care for a day, for a lifetime, are not burdens. We are not burdens.

And we don't have to talk about any of that, in any case! How are you?


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:
  1. Disabled and neuroatypical people should be talking most of the time. Neurotypical people without disabilities, take a step back and mostly listen.
  2. Some neuroatypical people identify as disabled. Some don't.
  3. 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.
  4. You don't need a doctor's diagnosis to identify as disabled.
  5. Different people sometimes have conflicting access needs. Sometimes a group can't accommodate them at the same time.
  6. "I'm here" and "I agree with this (quoted) point" comments are helpful and welcome.
  7. 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 three previous MetaTalk discussions of disability.

This is a collaborative post produced by brainwane listening to input from the previous threads. Thanks to gaybobbie, colorblock sock, mittens, and Marie Mon Dieu for replying to my MeMail, checking this draft, and approving my use of their comments. If you are interested in working on collaborative posts, the Collaborative FPP Drafting page is available at the MeFi Wiki.

And -- hi. Glad you're here.
posted by brainwane to MetaFilter-Related at 1:18 PM (136 comments total) 44 users marked this as a favorite

Thanks for posting this.

Having a tough time at the moment (just lost my job; family health stuff; etc). In applying for jobs I always declare my disability (less stressful for me if they know upfront). For a couple of jobs recently I've ticked the "I am disabled and therefore want a guaranteed interview if I meet the essential criteria", which is a thing for public sector jobs in the UK. Don't know if it's a thing in other countries. Anyway, I always feel conflicted and guilty about doing so.

That's all I've got at the moment, except to note that there are currently 219 MF posts tagged disability. There is some interesting stuff there. There are 437 in Ask. Not as big a discrepancy between the two subsites as I thought there might be.
posted by paduasoy at 3:03 PM on January 21, 2020 [9 favorites]

hey, i have a not-outwardly-visible mental health disability and i do not have the spoons to go deep in this thread today but i just wanted to pop in and say i am glad that this thread is here, i'm grateful to all of those who worked together to make it, i feel more seen and included as a result of this thread being here, and i hope to have spoons to come back in more depth because the questions posed for discussion are interesting and thought-provoking.
posted by lazaruslong at 4:20 PM on January 21, 2020 [19 favorites]

I have several mostly unrelated thoughts, but first: thank you for this thread. I'm excited to see where it goes. Also, good vibes to paduasoy and others going through a rough time.


I've only ever felt access intimacy with my partner, and a lot of it comes from having a shared language to quickly convey what I need and having that immediately understood and acted upon. "Too many" and "I can't because motor stuff" and "it's sensory bad" and etc. Sometimes I'm too disabled to properly explain what I need. Having someone who gets it with a short signal and can immediately help me in the way I need is something I think I take for granted, but it's so incredibly relieving.


One thing I keep thinking about is the difference between accommodating and welcoming disabled people. Last year, I started attending a Unitarian Universalist church. The service started with announcements and a reading, and then came time for worship.

"Please rise in body or in spirit," said the reverend, and I almost started crying.

I had never felt so seen and validated. Growing up, I was constantly berated for not being able to stand during worship or other church activities, adults only backing down when I finally figured out the magic words: "I have a heart condition!" I'm so used to having to justify myself. It was incredible to be told point blank that I didn't have to.

I didn't realize the true power of that phrase until our reverend was out one Sunday. Someone else lead worship, and he said: "Please rise..." He halted, a little, here, as if he'd forgotten something. "...if you're willing and able." I was surprised by how qualitatively different that felt, how disappointed I was.

I eventually figured out the difference between the two phrases. One said, "Please join us, but it's okay if you're disabled and can't." The other said, "Join us, and if you're disabled, join us in a different but equally beautiful way." That's the difference between a space accommodating my disability and welcoming me as a disabled person. The thing is, if I hadn't previously heard "please rise in body or spirit," I probably would have found "please rise if you're willing and able" perfectly acceptable. I would have been so relieved that I had permission not to stand, that I don't think I would have even thought about the way it excluded me. I didn't even realize what I was missing. I think there are probably a lot of times and spaces in my life like that.


I'm tired of justifying myself in general, I think. I've always been really good at self-advocacy. At the beginning of every semester, I go to my professor with my accommodations letter and explain my chronic illness and what it means for my participation in the class. After 13 semesters, with 2-5 classes per semester, plus jobs and internships and what-the-fuck-ever, I'm just... so fucking tired of it. I know I have to, but I'm so tired. Even though I've only ever had one conversation that required me to do anything more than say "hey, here's what up" (and even that wasn't particularly aggressive, just a sort of weird paternalistic but I guess ultimately helpful "I believe you but you're going to need official accommodations later on in life so I'm going to ask you to go through that process"). I'm just tired of having to do that, over and over again, to each new professor, practicum supervisor, advisor. I'm tired.


I've been noticing a trend on MeFi where, particularly in regards to climate change initiatives, a particular policy or change is suggested, someone mentions how that limits access to disabled people, and the answer is always, "Well OBVIOUSLY there will be an exception for disabled people." No, actually. Again, and again, and again, and again, there obviously won't, because no one thinks of it until enough disabled people have a problem loudly enough that maybe, I guess, they might consider shoehorning access in as an afterthought, if we're lucky.

Often the "disabled people exception" also relies on some identification or gatekeeping system to determine who is disabled and gets the "special treatment." A recent example was banning cars on certain streets, but of course disabled people with placards/plates can go through. Easy, right? Not to anyone who's actually been through the process of getting a placard/plates. There are so many steps where that can break down: you need insurance/money to see a doctor, you need to have somehow who believes you about your pain/fatigue, you need to get in to see the specialist that books a year out, you need to even know this is something you can ask for, etc. etc. etc. Getting "official" documentation as a disabled person is actually really fucking hard and absolutely a privilege. Any proposal that requires identification or gatekeeping can and will hurt disabled people.


Chronic illness jam I recently rediscovered, for anyone who needs it.
posted by brook horse at 5:53 PM on January 21, 2020 [59 favorites]

Posting in the weekend loneliness thread left me feeling even lonelier. I regret sharing my experience. My disability is the cause of my loneliness because it left me homebound without transportation and there's nothing I can do about that right now. It hurt so much to see people so glibly wish they could have more alone time. There's a time and a place, and that thread was not it.
posted by Ruki at 6:31 PM on January 21, 2020 [44 favorites]

I'm going to the opera tomorrow night. This is one of my absolutely favorite pleasures, something I hold inside myself to think about at my lowest moments. I've convinced one of my closest friends to attend with me - she's not an opera fan but she's open minded and is willing to give it another go for me.

But on Saturday I had a sensory overload day; the days leading up to Saturday I'd been really nocturnal and sluggish and properly depressed. Since Saturday I've had tremendous anxiety, although the overload dialed back down. Often after an episode I'll get a migraine the next day, but a migraine never happened, just slow mounting anxiousness and weird bodily pains and a low grade headache in my eyes and neck and constant heartburn. It's like I'm being gaslit by my migraines or something, I feel like there's ominous music in the background all the time.

Because I know my companion really likes the composer of this opera and because I've never sat there before in this space, I got tickets sitting us really close to the orchestra. Often, the all-enveloping auditory sensation of the opera can transport me and give me a really transcendent experience, so when I bought the tickets I was thinking how hopefully this will give me a huge boost and take me out of my winter doldrums so I'll be able to push through the cruelty of February.

But I'm currently worrying myself in circles because I'm terrified that instead of being transportive the noise of the orchestra and being so close to the bright lights of the stage with the contrast of the dark theater and having to stay seated with good theater etiquette is going to trigger that elusive migraine. I'm worried that my dear friend who is giving opera a second try for me, because she knows how much I like it and how sad I am that I have nobody to go with me, will end up having to take care of me instead. I'm worried that I won't be able to sleep and I'll end up asleep in my seat halfway through the second act and wake up shouting because apparently there's a gunshot effect. I'm worried that my anxiety is being caused by my physical symptoms and not what rationality and experience tells me which is that it's the other way around and if I just give myself time and care it'll go away. I hate that I have all these things that make enjoying life so goddamn difficult.
posted by Mizu at 11:01 PM on January 21, 2020 [13 favorites]

I hid being sick for many years, both out of unawareness and shame. I try now to be blunt about it and say I am sick, not I’m tired or I forgot about that, but straight out, I’ve been sick or I’m sick and can’t do that. It’s clear who will and won’t accommodate disabilities, but it’s a lot easier on the people directly in my life to have clarity over what’s actually happening.

The most annoying work part about a chronic illness that flares up is the lack of a schedule. I can plan around it with flexible work or working from home where I have adaptations, but a weekday office commute is just unthinkable. Unless there’s an office where I could work under a pile of blankets with ice packs on my head, soundproofing headphones and sunglasses, not speaking to anyone for twelve hours, emerging only to gulp hot tea then crawling into my tiny cave beneath a desk.... I know, data server farms.

I’m really lucky to live with a lot of noisy talkative family and have forced socialisation and physical help daily. I have relatives living alone with chronic illnesses, and they have different cost/benefits, but I like my set. Metafilter is one of the online coffeeshop places I stop by for conversation and the disability and neuroatypical community here is a major component.

Shoutout to Sciatrix (Sp?) who has spoken with candour and clarity about autism and was instrumental in my pursuing diagnosis for my daughter and me.
posted by dorothyisunderwood at 11:20 PM on January 21, 2020 [15 favorites]

Hi, everyone. Thanks so much to brainwane and everybody else who’s doing the work to keep these threads as a regular thing. <3

On access intimacy: I’ve been amazingly lucky for the last twelve years; my partner Zarkonnen and I have supported each other and learned about each other’s access needs for our weird brains. I am successful at work and have a social life and hobbies with him to support me, but I honestly don’t think I could ever live alone. University was bad enough (I almost failed out) and that was easy mode in a lot of ways. Without other people around me, I just grind down into inactivity.

Last year we went from being in a couple to a triad with one of our closest friends. She’s moving in with us soon and I’m both excited and nervous about how the three of us will manage supporting each other: she’s also neuroatypical and dealing with other health issues. Of course, I’m trying to stop my brain creating some kind of hierarchy of who’s most deserving of what support, or who’s ‘most neuroatypical’, or other non-helpful but still persistent framings... I really hope that living with us will be as beneficial for her as living with Zarkonnen has been for me.

- - -

After I had a trauma response to my friend talking about their ASD assessment in November, I decided I really had to start dealing with that trauma. Progress has been uneven so far. My therapist was quite unhelpful and wants me to work on my perfectionism. Talking to my mum over the holidays helped a bit. She remembered weird things about the assessment that I’d forgotten.

I decided I want a second assessment, this time from someone with a 21st-century understanding of autism. So far I’ve written to someone who seemed suitable, but heard nothing back. I think I’d be fine with a positive or negative answer, so long as it’s from someone whose judgment I can trust.

In the meantime, I’m trying to be better at redirecting conversations before I get overwhelmed with horrible emotions. That’s working to some degree.
posted by daisyk at 11:59 PM on January 21, 2020 [9 favorites]

brook horse, your pastor’s greeting is beautiful. I’m glad you have somewhere to go that will welcome you so clearly.
posted by daisyk at 12:03 AM on January 22, 2020 [2 favorites]

Hi all, gifted with bipolar awesomeness here, as I've never hesitated to point out.

(Adbusters' Mad Pride & Anti Big Pharma movements probably had a bit to do with that).

Not sure if I have much to add to this particular one, except a shoutout to fellow bipoes & I'll be off reading over here.
posted by UbuRoivas at 1:30 AM on January 22, 2020 [2 favorites]

If anyone feels like it would be useful for them, I'm part of a slack group that is for disabled folks who work in 'tech' or a tech-adjacent area/role. MefiMiail me if you think this would be something you are interested in. (A previous slack has been without moderation for a long time so we recently moved to a new one.) We are a new space and are hammering out rules and norms at the moment so it's a good time to join if you like to talk about that sort of thing. I've personally found it really supportive.
posted by Space Coyote at 6:31 AM on January 22, 2020 [5 favorites]

yay i look forward to these threads! won't be commenting proper for a few days but in the meantime i'll be looking at the links here. i did look back at the original neurodivergency thread and some surrounding threads the other day and was uh struck by how much worse things were just half a year ago. like, i'm still witnessing what brook horse is talking about and other hurtful things, but just reading the old threads had me badly physically reacting for a while which was surprising and now at least i either feel alright about speaking up for myself or otherwise feeling like at least people here understand. so . grateful to y'all!
posted by gaybobbie at 7:13 AM on January 22, 2020 [7 favorites]

So after so many years being physically disabled due to surgeries- and now being physically capable enough to have a really tough but fulfilling menial job, I sometimes forget that i'm pretty mentally disabled too in some contexts. Like without shoes I limp- I really need to look into better management of my scoliosis, so far getting swole seems to be kinda helping that, my plantar fasciitis is just OOF, and I can't really run except for emergencies. But c'mon I can regularly and daily lift 30-50 pounds and sometimes more and I'm on my feet all day! That's a huge victory right?

But like- for years I was on anxiety meds and they worked great. I was still an unemployed autistic mess sometimes but I hadn't had a gory nightmare or a panic attack in years. And that horrible little voice in my head that told me I'm a terrible person who should just go home and stay there because everyone hates them- had largely been silent or at least muted. And I only sometimes disassociated in grocery stores. I got a great job and it was all due to me- but also that my anxiety was well managed. But then, I started getting heat exhaustion from the drug. I've been through this before, I naturally have a propensity to over-heat and some psychiatric medicines have a tendency as a rare side effect to make this worse. Because that's the thing with me- I'm allergic or have bad reactions to a huge class of medications, and my whole life it's been a matter of sort of anticipating when I can't take a thing anymore. I can't even take Sudafed or Robitussin anymore, not to mention the whole class of antibiotics that will give me hives. The problem is- this drug was the last one- a newer one, and... there is no alternative that wont have worse side effects.

So I got off of them. I had to- I couldn't keep my job if in summer I'd have to be carted off in an ambulance. And now, for the first time, since I was 8! I am completely off any psychiatric drug. And I'm coping well all things considered- having a job I love is definitely grounding. The fact that this is happening when my father's health issues are really coming to the fore isn't... great timing- But I can cope.

But oh god the voice is back. Every social interaction I have it's like a copy of me is telling me in my head that I'm terrible and I botched it and all my coworkers/customers hate me. It's not an actual voice mind you- I'm not having auditory hallucinations, it's that little self-monologue most of us have only instead of telling myself I nailed it, it's telling me i'm only fit to go live in a cave.

Honestly? That little gem was my entire childhood so I'm largely over it. I'm very good at ignoring it so... I'm doing that. The really bad thing is that I can disassociate in grocery stores. This was always a thing, it's a autistic sensory overload thing not really an anxiety thing but combine the two and OOF. The luckys we've been going to my whole life? it's like there's two copies of me walking down the aisle looking for oil, and I can't tell which head is really mine. We tried the Safeway that's actually closer to us and nicer anyways, and I panicked and snapped at mom a few times and had a moment where I had to leave the store. The real problem is that with dad back home from the hospital mom can't leave to go grocery shopping so it's on me to pick up things on my days off and after work. And the most convenient way to do that... is trader joe's. That.. is not a good store for sensory issues. I had a heavy disassociation a few weeks ago and called/texted my mother in a panic. I still managed to get the stuff that I needed to and got it home on the bus but oh man did I not miss this. The other day when I was on the ferry I disassociated too- one of the ferry workers asked if I was lost because I looked lost. Which was embarrassing to say the least.

The only thing about this that's ok- is that apparently I've done this my whole life, and it's one of the reasons mom accepted my late in life autism diagnosis. So as bad as this new/old stupid autism trick is- my mother is totally aware of it and isn't mad at me for having it. SO it is very nice to have an issue and have a parent (one of them anyways) be completely aware and sympathetic. But with things the way they are- I still have to collect the groceries.

One good thing though- I recently got a costco membership and I don't have a negative disassociation there. the ceilings are so big and everything is so stacked and symmetrical it's like taking several hits off a vape- I feel wonderfully light and slow and nice. So- that's a thing?

Sorry for the multi-paragraph barf- I just feel like this a really weird thing and some of you might grok it. I hope everyone is in a good space or is about to be.
posted by Homo neanderthalensis at 8:13 AM on January 22, 2020 [18 favorites]

I'm in one of those delicate spaces that come up with two disabled people in a relationship, where the balance of abilities/supports/needs changes for one person in a way that affects the other's ability to cope with their own shit, and everyone sort of holds their breath while things settle so as not to knock anything further out of whack. It'll be fine - in the grand scheme of things the new stuff seems manageable - but it's an adjustment nonetheless and I feel fragile about it today. Better tomorrow, hopefully.

It was a relief to see this thread come back; I'm glad you're all here.
posted by Stacey at 8:37 AM on January 22, 2020 [11 favorites]

kanata, I figure one way these threads work is that disabled people talk and non-disabled people (including mods) listen and learn.

I'm sorry you didn't feel like you belonged in past threads. I'm glad you are sharing your thoughts in this one.
posted by brainwane at 9:15 AM on January 22, 2020 [3 favorites]

Jesse the K and I are both members of a Dreamwidth community focusing on "Access and disability issues in Fandom":
Access Fandom is a learning & teaching space. It's about how to improve access at conventions and conferences and how to make online fandom more disability-friendly. It's an open community where we welcome free-ranging discussion: Share interesting, relevant links. Talk about your experiences creating or participating in accessible events. Post links to fanfiction, fanart, recs, etc, and/or original works featuring characters with disabilities. Self-promotion and cross-posting between different communities is welcome.

This community seeks to be open to a variety of cognitive styles. We welcome members with and without disabilities. All members may post.
It's worth checking out if you enjoy scifi/fantasy or talking about media in general.

Also: it's interesting to read the posting rules for the community, which include "Provide image descriptions for any graphic or photo. If you are not able to describe images, please ask for others to crowdsource a description in comments" and an explicit "Pasting bare links is OK". I wonder which of their rules might be transplantable to MetaFilter to help make MeFi more accessible?

(I met Jesse the K via WisCon, a feminist scifi/fantasy convention in Madison, Wisconsin, USA. I posted a MetaFilter IRL event about this year's WisCon, May 22-25, 2020, in case you would like to join me there. The thorough Disability Inclusion Services, Quiet Place room, Safer Space for People with Disabilities, and cheap childcare make it a pretty welcoming place to meet up. If you need a bit of financial help to get to the convention, let me know by Feb. 28th and I can nominate you for assistance.)
posted by brainwane at 9:16 AM on January 22, 2020 [9 favorites]

Homo neanderthalensis, that grocery store thing is extremely relatable. Picture me making an ASL "me too" sign at the screen* (gifs here). They recently revamped the supermarket near my work, which took almost a year, during which first one half and then the other was walled off and everyone shopping was squeezed into half the store. I was excited to see what the end result was, but it's terrible! Way brighter, louder, busier and less predictable somehow.

For some reason, one of the worst parts of shopping for me is that they always have music playing and as well as that being generally too much sensory input, it always seems like the songs are super melancholy ones, so it's emotional contagion as well. I try to listen to podcasts when I'm in the supermarket, which is extra sensory input but better than the music. The other day I just wore earplugs and it was a huge improvement.

* I don't really know ASL, but I learned a few signs while living with my awesome ex-housemate, who sometimes couldn't speak. The ones I know best: me too, yes, water, cute, cat, delicious.
posted by daisyk at 9:23 AM on January 22, 2020 [4 favorites]

So the added layer to the grocery store thing is that autistic people often have neophobia. I certainly do- basically we’re better off in places we’re familiar with and very nervy prone to overstimulation in new places. Hence my year long agoraphobic freakout when I was 19-20 and I didn't leave the house, and why my job is perf- its at a store I've gone to since I was a kid. So the place we’ve always gone to for groceries always set me off but it was nbd- BUT just like daisyk’s place- they just did a remodel And now while the shelves are in the same place everything on the shelves is in a different place! Hence the two heads one brain moment when looking for the goddamn olive oil. Because they moves the cooking oils to the aisle that used to have soda and the bread to the aisle that used to have soup and ARGGGHHHH. I cant use in ear headphones so maybe next time I go I’ll bring my over-ears and just podcast down the aisles. Thanks for the tip!
posted by Homo neanderthalensis at 10:08 AM on January 22, 2020 [11 favorites]

For some reason, one of the worst parts of shopping for me is that they always have music playing and as well as that being generally too much sensory input, it always seems like the songs are super melancholy ones, so it's emotional contagion as well.

Daisyk, I have the same issue, my grocery store plays just the worst selection of music, either terrible old pop songs I would have been happy to never hear again (which often give me the worst earworms that last for weeks) or else very tear-jerky country songs. Grocery shopping makes me melancholy anyway, seeing old people who remind me of my grandparents, moms shopping with their grown kids (mine lives far away), shopping for family meals & barbecues, etc. It all just reminds me of how far away my family is and how much of that stuff I've missed out on. Then comes some weepy song about daddy's hands or whatever. It's such a bummer for me. I keep meaning to bring earbuds so I can listen to something of my own but somehow I never seem to have them in my purse when I need them.

I don't understand why the music is so awful. I'm sure there must be some "research" behind it that shows it makes people spend more or something.
posted by Serene Empress Dork at 11:02 AM on January 22, 2020 [4 favorites]

I switched to online grocery shopping as soon as I possibly could for that reason. I can do it, but it's a lot of extra exhaustion vs the small delivery charge.

Which is one of the accessible/capitalistic things that goes on all the time - do i spend the money to get the accommodation so I can be ok and have energy, or do I yell about how unfair it is that I and others need to spend money on this access? Like i am almost literally uninsursable in my country and the autism diagnosis for my youngest has now pretty much excluded her from almost all private plans although she is a healthy young child. It's just a routine exclusion for mental illness. She can be excluded from state school based on her diagnosis now in a way she wasn't pre-diagnosis because of they only *just* decided that children with special needs should have compulsory primary education. Rich parents here get the diagnosis privately and don't inform the system to protect their children. I struggled with that decision. Part of it was - do you hide a child's diagnosis of who they are? Do you fight an unfair system by simply existing outside of unacceptable norms? We already do in so many ways and it's exhausting but lying was so much worse .
I am so glad there is space for us to talk and yell, even if it feels cramped and tiny and frequently poked at. I remember being little in libraries searching for books that explained what was going in in my head and why everybody was so weird, and the constant feeling of exhaustion and suffocation. These days there feels like enough air to scream.
posted by dorothyisunderwood at 11:10 AM on January 22, 2020 [10 favorites]

Serene Empress Dork: It is all in the mix: The interactive effect of music tempo and mode on in-store sales


Slow & mournful = greater sales; "Given that both slow tempo and minor mode are associated with negative affect (i.e., sadness), music-induced sadness may well explain increased spending behavior in a shopping environment."

My grocery shopping issues encourage shopping at odd hours, when stores are less crowded, and having orders delivered when possible (incl. from Costco, Homo neanderthalensis -- though if your route involves a ferry, I imagine that limits shipping options).
posted by Iris Gambol at 1:11 PM on January 22, 2020 [8 favorites]

kanata: I don't think you were harsh; I know this thread started pretty theory-heavy and I know that I could have chosen an opening that felt more inclusive and readable. I like and value you. It's ok for you to take a break if you want, and, it's ok for you to stay and keep chatting. *tele-hug* if that is welcome.
posted by brainwane at 1:39 PM on January 22, 2020 [8 favorites]

Yeah I totally just glossed over the theory stuff and popped in to complain. Then I was like "oh no this doesn't fit" but after sleeping on it I'm like "it totally fits, screw it"
posted by Mizu at 1:45 PM on January 22, 2020 [4 favorites]

kanata: I would miss you if you left.

I give out favorites like candy but even so, I know there is a ton of your comments in that list.

posted by some loser at 3:55 PM on January 22, 2020 [8 favorites]

kanata, I am sorry that you are not doing well. I see that you disabled your account, but I just wanted to let you know that I was specifically thinking of you when I posted my comment in this thread about the loneliness thread and I wish I had called you out by name because I wanted to talk about it with you but was afraid to reach out. I was hoping you would take the lead. I am very out of practice with human interaction really and I am really sorry I failed you.
posted by Ruki at 4:00 PM on January 22, 2020 [17 favorites]

kanata, I also value your comments and participation here. If you decide not to come back, I get it and will miss you.
posted by Bella Donna at 9:09 PM on January 22, 2020 [10 favorites]

kanata, anyone who asks (like you have) how to help a friend who had to say goodbye to their cat is good people in my book. I understand if you feel like you need to take a break, but I hope you come back.
posted by virago at 12:42 AM on January 23, 2020 [4 favorites]

I found out a couple weeks ago now that after years upon years of being borderline diabetic, that the family history has caught up and there was sugar in my urine.

Like I need another thing on top of everything else.

But having had the hereditary neuropathy for much longer, my younger sister a nurse has started sending me pictures of charrto foot, and we'll meaning friends keep sending me information about diets and food I should stop eating, etc. It's just a wall of noise at this point.

I've grown up around diabetics and always treated them like they were capable people who communicated with their doctor and didn't need my input or opinion, and it's stressful beyond belief to not be afforded that same courtesy by people in my life.

Anyway, I just needed a place to say that without them seeing it.

But in better news, I've been doing a lot of aqua therapy and have managed to go a week without needing my cane after breakfast. Before then it's like my legs have forgotten to be legs, but after I walk pretty steady. I was told not to get too cocky because it's a short term victory as the neuropathy progresses. But I'm just so proud of myself.
posted by 80 Cats in a Dog Suit at 3:52 AM on January 23, 2020 [17 favorites]

On access intimacy, I had a dear friend visiting last year, and both of us have Chronic Stuff. There was a point when we were out doing something, when I said "I'm at the edges of my spoons, how about we do this easy thing and then go find food?" and she said "Oh, yes." and it was great, having it be that easy. No need to justify or explain.

I mostly keep the friends who can do that, or get how it works, these days, and take several steps back from the ones who don't get it. My life is so much better for it.

I'm feeling a bit complicated at the moment. I had a migraine last week, and this week has been like swimming through molasses. I don't think anything in particular is flaring, but I've had more issues with (unusual for me) anxiety that might be medication side effects, or might be something else shifting, who knows.

I cancelled the thing I was supposed to be teaching (coven class) on Saturday, which felt really good as soon as I'd done it, so I can spend two days without anything I have to do on a schedule, and I suspect there will be napping (or at least curling up under the covers with a book and the cat).
posted by jenettsilver at 7:35 AM on January 23, 2020 [6 favorites]

The dissociating in grocery stores is such a thing, and it drives my partner nuts. ("I am not your seeing eye dog!") I... need to explicitly talk about how this is dissociation rather than not paying attention, come to think of it. Fuck. (I didn't realize that's what was going on until like... a year ago, and then it feels like cheating or being dishonest to name it and reframe it properly, which is my own internalized shame. hahaha, god.)

I'm in the same kind of delicate space right now that Stacey mentions, actually, and... it's hard to negotiate. I think right now (as ever), I'm struggling with a lot of internalized shame at my own limitations. I keep trying to insist that maybe I can do this thing and the other thing and also these others, because I have no sense of what is reasonable and what isn't, and saying "I can't do this" seems absolutely terrifying. And because we both understand disability in theory but are not always good at self-advocating for ourselves on points when the other person hasn't thought about a thing as disability, sometimes these conversations aren't always as productive as we all might theoretically hope. We all internalize the beliefs of the world we live in, and rooting them out is really difficult.

I'm trying out saying "no, that won't be possible" more. I backed out of something that I was honestly really looking forward to because I just don't have time to travel and do it right now, and I don't have the energy to balance it and do it right. (I still get to do some of it, but in a much reduced capacity.) I'm trying to ask explicitly for what I need, too--but I gotta convince myself that I need it, first. That is, I think, the hardest brain trick, and I think that's a part of why access intimacy is so incredibly healing when it happens: the work of convincing someone that you need, even the work of convincing yourself, is totally pre-empted and done for you without any of that extra cognitive effort even needing to begin.
posted by sciatrix at 7:52 AM on January 23, 2020 [11 favorites]

And kanata: you've done nothing wrong by coming in here and complaining or venting without directly engaging the theory stuff. I won't speak for brainwane, who did this one on their own, but I can say that in previous threads when I started by introducing academic/theory concepts I did so not necessarily expecting that anyone would discuss those things. Rather, I hoped that people might read them, tuck the ideas away for later if they seemed useful, and then talk about whatever seemed most pertinent to them under the banner of disability. I hope your break feels restful, and I hope that you feel welcome to return when you feel safe again.
posted by sciatrix at 7:55 AM on January 23, 2020 [7 favorites]

So my ex partner is a super sweet guy and he let me leave some stuff at his home in California when I relocated. Then my dad had another stroke and I desperately needed to locate his power of attorney and his will. My friend volunteered to sort through the three boxes of papers to see if they were there.

He is a total hero because he went through the boxes and he did indeed find those papers and mail them to the appropriate people. But he couldn’t just do that. He had to semi lecture me about how these important legal forms were just randomly stuck among completely unrelated stuff. He also held up a bag of decade-old receipts in a plastic bag to visually illustrate, because we were on FaceTime, the kind of shit he had to go through.

And I understood that this was the price I had to pay to get the help I needed. But it’s both frustrating and enraging. He volunteered to look for the documents. And when he volunteered I warned him that he would not find like with like. He kept asking what kind of envelope he should look for and I explained at least twice that there was no envelope to look for.

I do work dates on occasion with a friend who also has ADHD and we have an understanding that probably one of us will be later than the agreed-upon time to start. And that neither one of us will be upset with the other person for not being there at the appointed time. That makes my life so much easier. The guy I married literally 40 years ago continues to be surprised by my audio processing disorder, which I only discovered a few years ago and did my best to educate him about.

Now I’m at my dad’s place because I moved out of the very nice place where some very nice family members were hosting me. My lovely relatives cannot understand why some neuroatypical people cannot hold down a job or even get hired to begin with because they know exactly one person like that who managed to get disability so why doesn’t one of my dad’s roommates have a job? Like, what’s the problem?

How I most often experience ableism is within myself with my unrealistic ideas about what I should be capable of doing, how I should be capable of doing it, and in what timeframe. It sucks when someone who I know cares about me feels obligated to humiliate me for my own good. Or maybe he simply was proud of the good job he did and wanted to demonstrate the many obstacles in his path to finding the documents I needed. Like I didn’t know.

I don’t have control over other people. I am getting better at realistically viewing myself and my capabilities. I just wish I always started from a place of love and acceptance rather than a sense of being broken and never, ever measuring up. I do somethings very well but somehow, as humans do, I get stuck on the things I don’t do as well and blame myself.

Ableism: It’s not just for the able. That fact about myself is both true and hard to manage. Thanks to all who created and have contributed to this thread.
posted by Bella Donna at 8:08 AM on January 23, 2020 [19 favorites]

(Just on the topic of grocery shopping: on the blue we talked a while back about a grocery store that "implemented sensory-friendly shopping on Sunday nights", and I'm realizing I should look for resources on how to talk to my local grocery stores about implementing something similar. Like, my local transit museum offers visitors free sensory kits for checkout "including noise quieting headphones, a visual schedule, and list of quieter spaces", and I know a lot of supermarkets couldn't do that, but they could do something like "here's a photocopied map of what's where and a free cheap pair of earplugs, and once a week we'll quiet the music and dim the lights a bit for an hour". I don't have trouble talking to strangers or using grocery stores so this is something I could work on as an ally.)
posted by brainwane at 8:17 AM on January 23, 2020 [3 favorites]

I'm trying to puzzle my way through the dichotomy of conflicting, indeed completely incompatible needs and expectations, from different groups. I don't know if there's an answer. This affects me on a deep level as depression, anxiety and ADHD are a huge tangling growing and shrinking ball inside me that demands a sacrifice. I'm the sacrifice if it had its way. I imagine many feel the same way.

Anyway, conflicting ideas... the most recent example I can think of is hearing both, "Un-affected people should say what they'll do to fix this on their end." and also "Un-affected people should stay out of this space and not try to take it over." Like, both can't exist in the space.

This affects every conversation on inclusion, accommodation here and on the web as a whole, I feel. It seems like "the only way to win is to not to play" with play meaning participate in the internet. But I love so many people, have had the kindest individual and group interactions and learned so much so I want to play, damnit!

My personal solution is to take the kindness when I can both internally and externally, assume good intentions if I can and disengage when I sense the intentions are otherwise. I hope it's working. I tried to stop taking my anti-depressant because I thought it might be... but now I'm 3 days back on it because it wasn't going great.

kanata, I hope you are kind to yourself today if you read this. And everyone else who reads it too.
posted by OnTheLastCastle at 9:19 AM on January 23, 2020 [8 favorites]

I have bipolar disorder that was only correctly diagnosed and treated five years ago, even though I had been dealing with horrible depression for 25 years. My entire life I have severely struggled with getting up in the morning and it's been really disruptive to my work life. I finally got my medications adjusted well enough that this past year has been the best I've ever experienced in terms of getting up and getting to work. But I still wind up having mornings where I wake up and I just cannot do it and call in sick (such as today). I never call out when I have something important on the calendar, and I never go over my allotted days, but I always feel so guilty taking the day off. Especially since I usually sleep for a few more hours and then wake up feeling fine. If I had the flexibility to come in hours late I would opt for that but it's just not a possibility.

I have a performance review coming up and I'm terrified that my boss is going to call me on it. My last review wasn't horrible (I got a very small raise) but not great and part of it was that I was working from home too much and they thought it was getting in the way of my work. I totally shaped up and have not worked from home once and got back on therapy/tweaked my meds and I think I've been doing a much better job, but the sick days haunt me. It doesn't seem productive to spend the whole day feeling guilty but I just can't shake it. I did have to tell them about having a mental health condition when I had an emergency hospitalization, and accommodations came up during that, so I think they're at least aware there are disability issues at hand. And they're a generally accommodating workplace to everyone's needs (like I have an approved work from home day once a week to go to therapy). So I know all this but still feel so lousy about needing more days off than most people. Ugh. It makes me feel like no matter how good I am at my job, the bipolar is always going to hold me back.
posted by Neely O'Hara at 10:35 AM on January 23, 2020 [10 favorites]

I'm still trying to figure out both (a) what's going on with me and how to navigate that better, and (b) whether and when and how to engage with that on MeFi, and man there's just a lot of stuff wrapped up in that which is why it's still pretty slow going as far as talking about it. And I've been explicitly welcomed a couple times to talk about it and I really appreciate that, and appreciate the existence of these threads more broadly as a community-level resource. It's hard not to feel like my presence is an inherently complicating factor and if the choice were to be either I participate or other people more broadly feel more comfortable, I'd pick the latter, but part of what I'm trying to work through is the reality that a lot of that is probably in my head and if I'm feeling a sense of isolation that ties directly to telling myself that I shouldn't talk about shit here, maybe I should stop telling myself that? So, yeah. Hi, basically.

I feel that impostery thing some folks have talked about at times, about operating from a place of only fairly recently having recognized that there's stuff going on, and not having a formal or clear diagnosis, and so feeling like I don't have the bona fides. And to some extent feeling like, hey, I'm doing an okay job of being functional, so maybe this isn't a place that needs space for me? And then at the same time recognizing, as much as I'd like there not to be, a degree of fear and internalized stigma about mental illness and mental health shit where it'd be a relief to be proven an imposter, to just be having a bad month with an otherwise normative brain and whoops got that one plug back in the outlet and everything's fine now, never mind! Except it's not a month, it's a year, or maybe a few years, or maybe a lot of years, and it's really just things coming to a head that's made me stop and really recognize that this stuff is an issue and has been affecting me to some extent for a long time. Or maybe more to the point if it's really only been hitting me hardest the last year, that doesn't make it any less real or valid or worth trying to understand and work with.

So I've been increasingly taking steps to try and identify and get help with a clump of stuff, that same Venn diagram people talk about of anxiety and depression and ADD/ADHD, possible intersection of spectrum stuff, with no obvious "it's this one thing" sort of diagnostic angle so far. I've been having a much harder time lately finding the will and energy and confidence to push through on stuff that used to feel more doable. And changing my priorities so that stuff that I can let slide slides has been part of getting out from under some of the weight of that but it's scary and worrying in its own right because I have spent years building up scaffolding and levees on the assumption that it'd all hold just fine, and if it's not holding after all what all exactly needs to change and how, and how do I roll in my serious dislike of change into that process, and, and, and...

I've never used the "disability" framing for thinking about my own stuff, and I still don't know what to think about it because of the newness of the impact this has been having on me. Impostery feelings, worrying about appropriating a framework that isn't mine. On the other hand: I am seriously struggling at times to handle things I used to feel capable of handling without seeming effort. Shit overwhelms me, shit loops and feeds back on itself, and that's a real thing having a real impact on my life and my work and, yeah. I'm not able to tackle the totality of things lately the way I was five or ten years ago. I'm hedging where I can and doing what I can and trying to sort out how to rearrange and reprioritize and share work and burdens, and I'm kind of...managing? But fuck it's spotty going, and as much as part of what I'm trying to work on is not catastrophizing about letting little things slip that it's okay to let slip a bit, the anxiety about something really slipping that I can't afford to let slip just loops it all back on itself.

It's hard for me to talk about this stuff on the site partly because I feel like I can't every really stop being cortex-the-moderator completely even when that's notionally the context, and I feel so incredibly on the spot about every word I write here and for that matter elsewhere. And I need to try and believe a bit that that's me psyching myself out, that along with everything else I've just spent 12+ years letting myself get a little too tangled up in a sense of other people's perception of me and that it's okay to try and compartmentalize that a bit and trust other people to mostly give that the benefit of the doubt. But I feel so uncertain about that in practice. A lot of staring at a blinking cursor here debating hitting post.
posted by cortex (staff) at 11:39 AM on January 23, 2020 [60 favorites]

Ah, it's like you plundered my brain, cortex. I see you.

On the other hand: I am seriously struggling at times to handle things I used to feel capable of handling without seeming effort. Shit overwhelms me, shit loops and feeds back on itself, and that's a real thing having a real impact on my life and my work and, yeah.

Knowing this is happening is the first part. That's such a huge step that I usually (to myself, about me) laugh like DUH YOU IDIOT OF COURSE but when I take a step back I realize it's a huge step. The loop is very real, and while you probably know this, it's okay to let others help you. Whether it's doctors, friends, family, therapists, whoever.
posted by OnTheLastCastle at 12:18 PM on January 23, 2020 [8 favorites]

I just want to leave a little crumb here: The best thing when you have a chronic illness is when you have a friend with chronic illness and either of you can call some outing off at the last minute and neither of you are grumpy about it. Because you know that next time it might be you, and that your friend may really want to Do the Thing, but they can't, and that's OK.
posted by fiercecupcake at 1:58 PM on January 23, 2020 [18 favorites]

Sup. Things coming to a head is a thing. One can be a high-functioning neuroatypical person with mental illness and not realize it for many years. You'd think one or one's friends and family might take a look at the bad job one stayed in for years and consider the discrepancy between that and one's youthful academic achievements and determine that there's maybe something wrong, but you'd be incorrect.

That's pretty incoherent, but that's all I got. Sorry if I yelled at you while I was hypomanic in the autumn. I was real, real sleep deprived. I'm only kinda sleep deprived now, but I'm also depressed and overwhelmed. Thanks to LobsterMitten for the advice on that really quite urgent AskMe that I haven't had the spoons to write and post even with advice. It was super helpful. Ms C and I have just had a lot of appointments.
posted by Caduceus at 4:27 PM on January 23, 2020 [14 favorites]

But fuck it's spotty going, and as much as part of what I'm trying to work on is not catastrophizing about letting little things slip that it's okay to let slip a bit, the anxiety about something really slipping that I can't afford to let slip just loops it all back on itself.

God, yeah, I hear that, man. I think--a common thing for folks who are kind of holding it together on neurodiversity shit by sheer force of will is total rigidity on certain things. I must be out the door ten (twenty, thirty) minutes early because if I let myself dither to leave on time I'll be late again; I must do the grocery run on a specific day or I'll go hungry again; I must hold this routine with no flexibility because if I allow flexibility I'll lose track of time and drop things. You wind up holding on white-knuckled to all the treacherous things that might fall and slip away.

And sometimes that lists of "must do"s add up to a total we can't maintain anymore, and then things really go to shit. If you were already clinging white-knuckled to life and then your hands start developing a tremor... what then?

Yeah. I hear you. It's hard. But... speaking purely for myself? I am glad you trusted us here with that, and I am glad that you are seeking help and support so that you can set some things on a shelf instead of trying to hold it all, or let a few things bounce and find their own holding place. It's good for you and also for the work you do--and I'm saying that as a person who chronically values myself purely in the work I produce rather than any innate value as a person, and I think you might have that tendency too. (Stop me if I'm projecting.) But.... it's good to rest. Truly. It's good to build up personal energy and focus and cognitive reserves. I am really glad to hear that you're working on that, too.
posted by sciatrix at 5:47 PM on January 23, 2020 [18 favorites]

I must be out the door ten (twenty, thirty) minutes early because if I let myself dither to leave on time I'll be late again

I am NEUROTICALLY early to work and shit and this is why! I don't think I've been late for stuff since I was a kid but I remember that and drastically overcompensate whoooo not alone!
posted by Homo neanderthalensis at 6:01 PM on January 23, 2020 [10 favorites]

Cortex, I'm so glad you were able to participate in this thread. The work you've done has made MeFi a space where we can have these conversations, and I'm seriously grateful for that. I hope you can benefit from the space you've built as much as I and other disabled/neurodivergent MeFites have.

I want to say this for you and others reading the thread: you don't need anyone's permission to call yourself disabled/neurodivergent/autistic/ADHD/etc., but if it makes you feel better, I diagnose people with psychological conditions (not a licensed psychologist quite yet--but I regularly perform assessments and provide diagnoses as a student clinician) and I still believe that no one knows you better than you know yourself. What you're experiencing is real and valid, and if there's language that helps you describe it, please use it, "formal" diagnosis or no.

I hear you on "I'm functional, I'm managing." I come across as extremely functional, and for a while I've felt really good at how well I've been doing re:chronic illness and disability stuff. It wasn't until I started taking a closer look at some of my peers' lives that I realized how much of that is due to how I've structured my life to make me as functional as possible, some of it intentionally but a lot of it without consciously thinking "I am doing this because I am disabled." Where I choose to live, how I set up my apartment, the kinds of activities I engage in, the career I chose--all of that was centered around setting up a life I could live. Some examples: finding a quiet apartment on the first floor, because background noise makes me completely check out from anything I'm doing, and because taking the stairs requires 20-30 minutes of rest when I get home, which I can't do because I need to make dinner and do homework. Figuring out recipes that are a mix of pantry and frozen food, because I don't have the spoons for grocery shopping more than about once a month. Not going out to bars or parties or late-night events (or only going for an hour or so and then giving an excuse to leave) because the noise is too much, and because I need to keep a strict sleep schedule or I end up a wreck. Having way too many clothes because sometimes I'll go weeks without being able to do laundry, and I need to make sure I don't run out. Aggressively forcing my school schedule to allow for an extra day off a week, because I get hardly any work done if I have to leave the house for more than a few hours, so going to school 12pm-4pm Wednesday/Thursday means both of those days are gone and useless, while going 12pm-8pm on Wednesday and having Thursday free means I have to spend Thursday morning recovering, but then I have the evening to work. I set my life up for success in ways abled people... don't have to, in order to be functional. But because it's become such a habit, I kind of forget that. I arrange my whole life so I don't run into the kinds of barriers that I can't surmount because of my disability, but that doesn't mean the barriers aren't there--just that I've charted around them, often by eliminating opportunities or activities abled people get to engage in if they want to. And it's a very tenuous situation to be in, because my situation could change in ways that don't allow me to set my life up in this way.

I also often forget how much work goes into keeping myself stable. I have to do a lot to keep my symptoms under control--this includes sleep/diet stuff, but also a lot of organization, planning, preparing scripts, repressing "quirks" in public, aggressive challenging of anxious thoughts... I'm always doing things to manage my symptoms. Like the above more "structural" stuff, this has become a habit, so I forget that I'm doing all this extra work to stay stable. But I am, and it is work. And I experienced a pretty bad burnout the end of last semester, and just... stopped doing all that shit for like a month. I hadn't realized how exhausting it was. Of course, I felt like shit because I wasn't doing what I needed to take care of myself. But it made me realize just how much energy I'm putting in on a daily basis.

So yeah. I'm "functional," and there a lot of days I don't "feel" disabled. But when I stop and think about it, I realize that my disability has affected my life in significant ways, and I need to put in a lot more work than my peers to be "functional."

Trying to stand for 2 minutes, walk for 5 minutes, or sit still for 10 minutes is also a good reminder that I am, in fact, still disabled. I've just set up my life so I don't have to do those things.


I am NEUROTICALLY early to work and shit and this is why! I don't think I've been late for stuff since I was a kid but I remember that and drastically overcompensate whoooo not alone!

Same hat! Same hat!
posted by brook horse at 7:10 PM on January 23, 2020 [25 favorites]

brook horse, can I subscribe to your newsletter... your comment and Bella Donna's comment and cortex's comment have me reflecting on my own internalized ableism, and how hard I push myself to "get better" at the expense of the work I also need to be doing to adapt.

I had started writing a comment last night, but I've been focusing my mental energy on keeping watch over the pyre of US democracy in the impeachment thread and didn't feel like I could quite synthesize my points. I've sometimes thought about my disability as 'going through the looking glass,' where I no longer seem to fit as well as I previously did in the societal structures that exist, and now they are even more exhausting, demanding, and sometimes dangerous. I'm still so new to this, but I am mesmerized by your description of adaptations, brook horse, in a 'wow, why have I been only accidentally figuring some of these things out,' instead of proceeding with more intention and self-compassion.
posted by katra at 9:02 PM on January 23, 2020 [8 favorites]

Also if you're a creative who goes through intense cycles of inspiration and creative block, you might want to talk to someone about bipolar disorder.
posted by Caduceus at 9:14 PM on January 23, 2020 [1 favorite]

I've been thinking about this thread alot. Right now I'm doing really really well, and I'm not feeling particularly like I have a disability.

But my spouse is one of the few people who actually know what's going on in my head, have an idea of my diagnoses and all of the stuff that's happened to get me here.
It's isolating in many ways . Like my story and path many of my coworkers would outright not believe if someone told them my actual life. But that's what invisibility does. It straddles me between the needs I pretend I don't have to most the world and the refuge of the few who do.

I know that I've put in a significant amount of work, that I've adapted and fought and pleaded for the care I've needed when I needed it. I'm sure I'll need something again eventually .
My problems aren't gone just.... Minimized. Under control. Regulated. I don't know.

My access needs are complicated more so because of internalized stigma and lack of education around what's going on. I just hope one day it's different. I have been so lucky to be able to recieve the care I recieved, to travel for it, to pay for it. To find able and caring practitioners when I need them. Looking back, I now know that I was so desperate for those needs to be met that I spent time with people who really weren't meeting those needs or understood what was going on at all. And that I would take just any as semblance of someone meeting those needs. It skewed my perception and also really harmed my care.

And then everything was related to it. My health suffered. I took medications I didn't need . Things weren't addressed because it "obviously" it was "the disability " they said. It wasn't though. My health needs and my mental health needs were in fact seperate things that needed separate treatment. As my mental health got better, as I became a better advocate, as I presented more neurotypical, and some just dumb luck those things got separated out. I got what I needed, or atleast I think I did.

This isn't super coherent, but I appreciate this space. I hope that it is a supportive place. I hope that I'm able to support others.

And kanata, I hope you feel up to returning. I appreciate your posts.
posted by AlexiaSky at 10:02 PM on January 23, 2020 [9 favorites]

First I must send love to kanata, I hope you take whatever time you need and come back to us refreshed a bit. Your voice and your words and presence are greatly valued here and I would miss you, certainly.

Second, I also feel my own imposter syndrome droning at me in the back of my mind despite my various diagnoses etc, because right now I am functioning for the most part remarkably well...and then I was overwhelmed with recognition by the commenters who have talked about how much time and energy and rigid attention it takes for them to maintain that level of functioning. Here are just some of the things I have to do:
Take 9 meds divided up into 3x per day
Set 4 alarms to be able to wake up on time
Constantly be thinking ahead to how to exactly plan my Adderall so that I can get anything done at all
Use an additional supplement to be able to sleep on top of 2 sleep meds
Keep my office door closed so that the noise and distractions don't either derail me completely or make me red hot angry
Avoid as much small talk as possible because the sound of it is like nails on a chalkboard and makes me feel like I'm going to start screaming
Keep my after work evenings free and not go out or make plans Monday eve thru Thurs eve
Go to bed weeknights by 11pm
Only do 1 thing outside of the house on my free days, more than that and I get panicky and angry and hot and anxious and feel like all my sensory issues are suddenly at level 10
Keep all my necessary items in a carefully structured assortment of zip pouches so I can just grab the ones I need for the day
Do most of my "morning routine" the night before because it's so overwhelming in the morning that before I developed this method I would literally just start crying and call in sick to work
Have a sensory lovey near me to sleep (my friend knitted a huge wonderful magical hatscarfbag and I love it so much)
Get regular neck and upper back massages from my wife because my neck muscles are both too tight and too weak and go into spasms, also because sometimes I just shut down and cant regulate without the deep pressure
Take Lyft to work and back because my sensory issues are so bad I can't drive (failed Driver's Ed 4x)
Have the groceries delivered because the grocery store feels like a nightmare to me and I get so flooded that I have to leave

There are more, so many more but that's a start. About access intimacy, I am lucky that my wife is really on top of what's going on for me usually, and just gets it if i say, "SENSORY!!" and that's all I can manage, she will help with the thing...which is usually something like helping me find black leggings in a basket of black clothes because my visual discrimination is terrible and then I get hot and feel like I'm going to burst into tears. My wife gets me on a deep level most of the time, and many of my friends do, too, and I consider myself so fortunate that they get it and don't get upset or offended. When I met my best friend, we immediately made a plan that if either of us has to cancel on the other one, no hard feelings ever because we each have our Stuff, and so since we both feel safe to do that, we end up hanging out more.

It feels so safe to be here in this thread with all of you, I see you, and I know you see me. Much love.
posted by fairlynearlyready at 1:55 AM on January 24, 2020 [17 favorites]

yeah, whiteknuckling my way through everything was my sole MO for like 23 years. honestly if i had not been fortunate enough be able to finally access some medication, i would still only be doing the whiteknuckle thing.

feedback loops are one of the most insidious parts of mental health illness for me. i successfully negotioated against myself down to where i thought a win was successfully whiteknuckling through life using a complex web of self-medication and fine tuned coping systems. like, i really thought that was a win. and compared to where i was before, i suppose it is, sort of? but that's not what i want my life to be.

for me, it takes getting my head even a little bit above water to realize i'm even drowning. otherwise it's just the background radiation of everyday life and i can't even see how fucked up everything is.

i've been slowly reclaiming my life from my disability and it's excruciatingly painful, not just for me but for people i care about and that care about me. but it's worth it.

up next on the reclaiming board: alcohol and physical exercise. wish me luck.
posted by lazaruslong at 6:20 AM on January 24, 2020 [12 favorites]

the water thing was prompted by the old joke:

two young fish are swimming in a stream. an older fish is coming the opposite way. the older fish nods and says, "the water sure is mighty fine today, isn't it?"

after the old fish passes, the two younger fish look at each other, and one of them says

"what the fuck is water?"


mental health illness and disability can put you in a hole where you don't realize that sun ever existed, and you're happy just to get some filtering through a fog.
posted by lazaruslong at 6:22 AM on January 24, 2020 [7 favorites]

On the topic of "must do's", I describe it as rules. (Or jokingly to myself, Dwarven Vows, sounds very wise.) Often, I don't even know they're rules and something happens then I try to articulate that I've built this system that I wasn't even totally aware of when it causes a minor conflict in my relationship.

One happened last Sunday when I realized that as the night closes down, I need to retreat to safe, non-challenging media so I can relax and be ready to sleep. We watched The Outsider (a book I've read, not challenging) and my partner wanted me to watch a music performance by an actress in it. I had a weird panicky reaction, declined saying tomorrow please then relented and she was hurt by my "lack of interest".

My point is that we construct these coping mechanisms, and if we honestly and with compassion, interrogate ourselves as to why, we can work with them or modify them. I hate going to work on Monday because of my job so adding anything stressful just doesn't work for me and I'm not in the right headspace to truly enjoy something 5 minutes before a bedtime I'm dreading.

The rules aren't inherently bad. And they're not inherently the functions of a broken person. I assure every single person here that neurotypical people have just as many strange rituals or "must do's", many of which probably involve wearing the same socks when the Cubs or Eagles play. ;)
posted by OnTheLastCastle at 6:35 AM on January 24, 2020 [10 favorites]

I see myself in so many comments in this thread, about internalised ableism and about doing well so long as our routines and rituals hold up. Some of it is painful to read, but I'm glad we're here together.

kanata, I always enjoy your comments and I hope you will be back here after a refreshing break.
posted by daisyk at 6:46 AM on January 24, 2020 [5 favorites]

I grew up in a family where we were all on the spectrum, except there wasn't a known spectrum yet. My oldest sister had the only label which was "hyperkinetic" because they weren't throwing the words attention deficit around yet. There was the usual rough and tumble, cooperation and competition, love and quarrels and the rest of it that you get in a family of kids, maybe a bit closer than some families because of the social isolation, as with a few brief exceptions none of us had any friends. You would not believe what an advantage this was.

We all grew to understand those a-typical needs that are non-negotiable and learned to work with them, including the all important situations where two mutually exclusive needs have to be met at the same time. By the time we were in our teens we had good access intimacy with each other. This is not to say it was perfect all the time but if any one of us demanded an accommodation and said flatly they had to have it they never had to justify it. "I need quiet." "I need to be alone." "I can't eat this." "I can't do it." "I want you to just listen while I tell you in detail about the obscure subject that currently is fascinating me. You don't need to give feedback, but I'd like to share it." "I can't be quiet. I am reading and that is so stimulating I have to laugh, kick and argue with the book." All that kind of stuff was everyday and if one of us need to read and laugh loudly and kick and another one needed to be quiet we simply found spaces for it.

There were never any shoulds about these things, as in someone should listen to me excitedly talk about cartilage and bone growth, or someone should be able to be silent, or someone should be able to tolerate noise, or someone should give up their love object or someone should just eat the food that was cooked for them. We got that shoulds were nonsense, like wanting magic powers. My sister should be quiet when she reads and I should be able to turn invisible and you should be able to turn food you don't like into food you do like - but obviously that's nonsense so how do we deal with the situation we are in. Shoulds are what get said when someone is trying to get their own way by dominating someone else, a form of bullying. Should is a properly phrased as want. There were good boundaries. I knew I couldn't make my sister be quiet, and I also knew that if she was hooting and banging the couch while she read she didn't want it to distract me and didn't want to upset me. There was a good understanding between intention and result, and we understood how critical it was to solve these issues not to win them over our siblings.

Of course there was none of this practiced access intimacy outside of the family. I think it worked with my siblings because we were inter-dependent and peers. It was much harder to establish that kind of intimacy in other families that I have belonged to because things were muddied by too much dependency. If you are in charge you can't ask the dependents to allow you accommodations because they can't fend for themselves the way siblings can, and it is difficult to judge if claiming your accommodations is turning into neglect or bullying. Even when I had migraines I had to look after the kids because a two year old cannot accommodate a thirty-five year old.

I think often access intimacy has failed in my relationships later in life because the person who needs to make accommodations just can't figure out how to. Often there have been situations where one of us knows that they are causing distress to another person, but for example they don't know how to stop being upset and venting. They couldn't turn off the emotional storm. It becomes impossible to solve when the person who can't turn off the venting goes into denial about how much they are distressing their partner. At that point it's just torment for both of them and the only solution I have ever figured out is to end the relationship.

Another example of not being able to figure out how to accommodate each other is when you have two people sharing a home and one of them only knows how to cook greasy fried food and has limited executive ability, so they don't know how to cook anything else, can't keep up with their dishes, and can't change what they are able to bring themself to eat, so they end up at loggerheads with someone who has olfactory sensitivity so they they can't cope with the smell of hot grease and a kitchen always full of burnt frying pans with a half inch of grease in all of them. They both end up miserable and withdrawing. That kind of thing has happened to me later in life a lot, where both people feel like a burden and feel unloved and feel incompetent because they have opposing needs. One has poor gross motor ability and the other has executive ability and can't put things away and the first one keeps getting hurt from tripping over the second one's things.

When I end up with a supposedly neurotypical boss or customer or member of the public who doesn't make accommodations and just gets pissy or contemptuous, I tend to think of them as having their own disability that they are unable to deal with change or be flexible. I don't tend to think of them as being right, and the way they want to do things as being right. I think of their inflexibility as being a matter of emotional and ethical challenges. Ah, they are struggling with empathy. No point trying to work with them on that. This is not the time and place. But I imagine that it gives them lots of relationship problems in their personal life.

Being disabled seems to me to be the most natural state. If I meet someone who appears not to have any disabilities I tend to think that I simply haven't figure out what their disabilities are yet, or they are pre-disabled, but barring a sudden death they will be disabled before much longer. We are all disabled in the wrong circumstances. You throw a life preserver to someone who can't swim and you get the dolphin back into the water when it beaches. Some situation is going to be sub-optimal for everyone and everything.

It's just so fascinating. How do I work and why? How do you work and why? What works for you? What do they do in other countries? What do other species do when they have this challenge? What's amazing is how often things work in so many different ways. Often there are multiple workaround and solutions. They all begin with figuring out what is going on and what their different needs are.
posted by Jane the Brown at 12:09 PM on January 24, 2020 [24 favorites]

It's just so fascinating. How do I work and why? How do you work and why? What works for you? What do they do in other countries? What do other species do when they have this challenge? What's amazing is how often things work in so many different ways. Often there are multiple workaround and solutions. They all begin with figuring out what is going on and what they different needs are.

yes yes yes yes yes yes ALL of this, fantastic comment, yes. I am so glad you had that environment to grow up in. I didn't at home, but I spent three years of elementary school with a "gifted and talented" class pulled from all over the county, almost all of whom were some form of neurodiverse. So at least among peers, I got to learn similar lessons from a bunch of other children who had their own obsessions and difficulties and didn't judge me for mine, either. It was probably, in hindsight, one of the most valuable opportunities of my childhood.

The worst thing is when internalized and externalized shame and stigma gets in the way of the ability to have those kinds of frank conversations. I've really struggled with what to do when I see that someone else has a thing they have a lot of difficulty with, but openly acknowledging that thing results in lashing out and a lot of aggression directed at me. It's really hard seeing that shame, wanting to say "I see you, you don't need to be ashamed, I get it--how can we accommodate each other's needs?" and getting an explosion back. I find that really frustrating and upsetting, like I have to watch unnecessary misery... even as I absolutely understand how it happens. Internalizing that ableism is a very common goad to force yourself to keep functioning at a high level without actually taking part in supports, especially for people who don't grow up with anyone else who Gets It around them.
posted by sciatrix at 12:17 PM on January 24, 2020 [6 favorites]

I just wanted to add that I am really enjoying the sharing and variety of experiences that you all offer here - it's a privilege to get to hear you all describe your ideas and needs and philosophies. Thank you all.
posted by fairlynearlyready at 12:44 AM on January 25, 2020 [6 favorites]

It's funny (well, entirely predictable, thanks ableism) how the goalposts moved. I got diagnosed with ADHD in November (plot twist!) which you'd think would make my participation here feel legitimate. But it's not like I had that endless neuropsych evaluation AskMe will tell you about. I saw a new psych who said "Uh... this sounds like ADHD actually." and had me fill in some short screening questionnaire, which I'm sure was more about convincing me than her. So maybe I'm really really obvious and systemic bias and lack of knowledge about neurodiversity stopped anyone from noticing until now? But, uh, holy shit Adderall. This is how other people experience the world? I cleaned my fridge a month ago and it is still clean. The first part of that sentence alone was record-setting.
posted by hoyland at 5:44 AM on January 26, 2020 [13 favorites]

oh god i'm so hungry to experience if adhd meds work for me. one day
good job and congrats on getting that diagnosis, hoyland! even if it wasn't as much work as presented as standard
posted by gaybobbie at 8:25 AM on January 26, 2020 [1 favorite]

Something I’ve been struggling to feel safe enough to say here at the moment:

I was frustrated by the recent AskMe about confronting a person without a placard parked in a handicapped space. I felt like it was a question that should have been answered by disabled people. The sense of crusading that permeated a lot of it - that kind of crusading can be a real double-edged sword. I’d rather err much on the side of wrongly giving someone in that space the benefit of the doubt rather than on the side of confronting someone who might legitimately need it.

I didn’t want to start a MetaTalk directly about it, because I felt like that would *again* be opening the floor for people without disabilities to weigh in, and I never have the energy for the conflict such a thread can be, as conflict of any kind raises my adrenaline, and raising my adrenaline uses my 1%-of-normal-level energy at about ten times the normal rate. It's not a safe option for me.

So I decided to wait until we had another one of these threads to say this, and I have continued to wait until now because it’s uncomfortable to say this publicly given how that thread went. I probably should have flagged it at the time, but it had so many answers by the time I got to it that I felt like it was already too late.
posted by jocelmeow at 9:35 AM on January 26, 2020 [15 favorites]

I've only experienced access intimacy with a few members of my immediate and extended family, principally my sister and our father. We all have the same heritable skeletal dysplasia.

It is tremendously comforting that my sister and I share access intimacy. For me, the gulf between what she understands and the rest of the world understands is vast. Otherwise in my life, it must be explained. If explained, I'm usually not listened to. If listened to, I'm usually not understood. If understood, everything else still requires explanation because apparently people lack imagination and empathy enough to generalize from what they've learned.

In addition to the quite disabling skeletal dysplasia, I suffer from either atypical depression or bipolar type-II. This has affected my life far more profoundly and pervasively than the dysplasia; though now in late middle-age the progressive physical disability, the two are about equal.

"I have bipolar disorder that was only correctly diagnosed and treated five years ago, even though I had been dealing with horrible depression for 25 years. My entire life I have severely struggled with getting up in the morning and it's been really disruptive to my work life."

I share this and it's comforting to know I'm not alone in it.

I've lost almost every job I've had for this reason. The only jobs where this didn't become an issue were those I worked at night or overnight. Late in my career I had enough cachet to negotiate a very late-morning start time, but even then it was a problem.

This interfered with my education. Indeed, it was only when I was at a college I loved, where I thrived, where for the first time I felt I belonged, where I excelled, where I felt happier and more myself than I'd ever felt ... and this was severely jeopardized because I couldn't get out of fucking bed in the morning, that I realized there was some sort of a serious problem that wasn't, you know, a moral failing.

The mere thought of having to get up anytime around 9am fills me with tremendous anxiety to this day and I do everything I can to avoid any such commitments. When everything depended upon this, every night was a minefield. Would I get to bed early enough? Would I fall asleep? Would my anxiety about insomnia and the (possible) coming absenteeism itself keep me from falling asleep?

Whether I'd fallen asleep or not, when that time came in the morning I experienced this absurd and extreme mental and emotional struggle. Telling myself it was vital I get out of bed just made me more anxious. Frequently, I would lie there and try to move, say, my arm, just a little? How hard could that be? And the minutes would tick by. Past the point of no return, now I had the struggle of calling in. Just do it! I'm kind of compulsively honest, learning the hard way to train myself to some social niceties and limiting disclosure, but this never stopped me from lying when (on the occasions I did) call in to work. It's virtually the only lying I've done in my life, but I did it for literally decades. When I would eventually lose the job, I always believed myself to be both lazy and a liar. Then usually a depressive crisis would result — suicidal ideation was insistent.

When, at the age of 36 and having the advantage of the excesses of the dotcom era, my physical disability had progressed to the point of justifying a decision to quit working, and with that money in the bank I jumped at the opportunity.

In the years since, I've still struggled with this depression and the occasional crisis and the increasing chronic pain and limited mobility — but I would never go back to that earlier time. It is impossible for me to describe what a relief it is to no longer be fighting that battle, every day, and often losing to disastrous result.

Between the mental and physical disability, I've had a very difficult time and still am. That I ever managed to successfully function as much as I did was only because of being privileged on several axes, being intellectually gifted, apparently being moderately likeble, not having a tendency toward an addiction, and having a great deal of support from friends and family. All these advantages and support have obscured just how fucked-up much of my life has been. My sister once asked my mother incredulously how it was that I kept getting fired and then hired on to a better job. How, indeed? I had a fuckton of advantages most people in similar situations lack.

It has, though, I think, kind of made it easy for all the people close to see mostly only my physical illness and not recognize the severity of the mental illness or how much pain it's caused me and how much I've struggled with it.

Sometimes I am grateful for this very obvious physical disability because no one asks me to prove it exists. Other times I resent that it seems like no one has ever understood how painful all these years of mental illness have been. Or that I'm still struggling with it — it's just that now my circumstances are more tolerant and I've been forced to find ways to cope and avoid the worst of it. I'm quietly sad. I would really like to find a way to enjoy life. But at least as long as nothing rocks the boat, I've mostly avoided the crises, the intense desperation, the feeling that I was always clinging to a cliff with the tips of my fingers. It may seem absurd, or sad, but I am deeply thankful for that.

Ever since the osteoarthritis caused by the physical illness reached a sufficient severity in my early thirties, my daily life has always been a negotiation within myself between getting things done and pain. I didn't like paying the pain price, but given my depression/bipolar, I had to take what opportunities of motivation were available, and I usually did. I never really minded being bedridden for a few days if it meant I'd cleaned house or whatever — it was a bargain I was willing to make.

In the last year, however, something has happened I never expected: the pain has become so severe, so easily worsened, that for the first time in my life I'm afraid of it. I should be clear: I've lived with chronic pain almost all my life. So did my grandmother, uncle, father, and still does my sister. Negotiating with pain is a family fact of life. I've long said that I don't so much mind the pain of chronic pain, but rather how tired it makes me, and the other secondary effects.

But now? I will wake up with that elusive motivation and want nothing more than to "jump" out of bed and do X, Y, and Z — because they are invariably greatly overdue and it would feel good — but the thought process stumbles to a stop when I think, oh, it's going to hurt so much. And so I find I am not lately even managing to do many of the few things I'd counted on myself to get done. What I feel in response is a kind of profound degree of disability that I'd not known existed. I don't know what to do in response.

My sister and I live most of our lives in bed. Our elderly mother does much to help each of us — here with me, and traveling to Colorado to my sister when my brother-in-law has to be out-of-town. They have two boys. (Both with the mutated gene, but at 8 and 13, while both show some clinical signs in x-rays, neither are affected to the degree to which every other member of our extended family has — which is unlikely and unexpected, but a huge relief.)

Okay, and so here's the thing: our mother is a really good person, a retired RN, and she's always done so very much for my sister and me — but she doesn't "get it". I mean, even in the sense that she doesn't fully understand that pity is toxic, she seems to invariably forget what we can and cannot do, what we need help with and what we don't, or when we would prefer none, or when and why some help is very difficult to accept.

I have limited movement of my hips — I can bend at the waist only so much that I barely reach below my knees. My feet are inaccessible to me. And so, when I can't put it off any longer, I'll ask my mother to cut my toenails. One time, when I was a little grumpy about it and, for the first time, tried to explain why — I confessed that someone cutting my toenails for me was one of the most humiliating things I experience. Unfortunately, she interpreted that to mean that it was a male gender insecurity thing and dismissed my confession with a wave and assertion that men also get pedicures. And I was stunned. It hurt me terribly that it wasn't even on her radar that what was humiliating to me was that I couldn't manage for myself such a basic act of personal hygiene.

And then, of course, when I expressed my hurt and anger, then the discussion immediately became all about how difficult for it is for a mother to deal with her kids' illness and disability, she feels powerless and sad, and so forth. And when I tell her that maybe right then wasn't the right time to discuss how emotionally difficult my disability was for her — well, that's when the ableist fragility really kicked-in. And the thing is, my mom is a kind and thoughtful person. If I can't count on her to "get it", for her to really try, then I can't expect that anyone else in the world will. And mostly, they don't.

They don't here. I have zero expectations that MeFi will noticeably improve about ableism. I work so hard as a cishet white man to check my privilege and be aware of my fragility response — not that I'm a paragon — but so many people here who are otherwise pretty woke seem unable to ever learn to recognize and apply the lessons they've already learned to something new. If someone says, hey, that wasn't okay, we go through the same dance yet again. This new thing just is never like those other things, we're told. No, in this case it really is up to others to educate and to support their arguments, to use the right "tone" when hurt, to prove that their feelings matter. Every damn time. There are some things that many people talk about much more than ableism, that progressives are more aware of, that nevertheless they have to be dragged and kicking to shut up and listen and take seriously. When I watch that happen, as it always does, I think, well, there go any hopes I have that people here will take ableism seriously.

I engage so enthusiastically on so many other issues here, you'd think I'd be eager to engage about this one. Well, no. Very much no. I can't get some of the people closest to me to hear me and listen. How much will it hurt when I try with people here, and they don't? And why is it that members of affected groups, such as in the case of those of us here, so often explain to mefites in MetaTalk just how hard it is to speak up, that they're vulnerable and have much at stake in way others don't, that they are tired, and so few people notice the pattern and learn from it?
posted by Ivan Fyodorovich at 10:24 AM on January 26, 2020 [10 favorites]

I hadn't even seen that AskMe, but I share many similar concerns. I'm often very struck by how much that kind of gatekeeping crusading serves less to keep resources available to disabled people and more to make sure that no "undeserving" person takes advantage of anything that might not be "rightfully" theirs.

I had hoped that these threads would be a place that people felt comfortable bringing things like that here, but I also totally get why that can be an intimidating thing to do. There is a tradeoff here between access and privacy - - would you have felt more comfortable bringing that up in a private space, like a Slack? Or is it just a function of wondering what this space is for?
posted by sciatrix at 10:40 AM on January 26, 2020 [3 favorites]

It's about putting it out there on the open internet, yes, but also substantially about its potential cost to me. That cost is incalculable in advance and that's dangerous.

ME/CFS means I must be extremely disciplined about staying within my energy envelope; if I don't, it leads at least to a temporary worsening of all symptoms, and the effects of disregarding one's envelope can be permanent; the reason I'm disabled to the point of being housebound and horizontal now is because of not having gotten good advice about respecting those limits early in my illness. How much I can improve now has a hard ceiling and an unstable floor. Getting into conflict risks the floor.

The energetic cost of conflict is extremely high, so bringing up something that may result in conflict is a dangerous gamble. It may cost much more than I have, and I'm at a massive disadvantage in a conflict with people who don't have the same energetic limitations. If conflict does arise, I quickly won't be able to take my own part - I will have to give up simply because I won't have the energy to continue mentally or physically.

I sometimes use the metaphor of finding oneself in a crowd of friends with much greater financial resources than one has. They may be able to spend without thought on pastimes where one can't even consider joining in, because they don't realize such spending is a barrier. In my actual literal life, I can't take care of my own activities of daily living, thus I don't have extra to spend on conflict - or anything else.

So conflict itself, and that if it arises I may have to carry around having had to walk away defeated or having communicated insufficiently because of my limitations, are all outcomes that suck energy. The safest move is not to bring this sort of thing up at all.

I gotta stop now; I wrote the previous comment early in the week and pasted it into the comment box today. Right now I'm trying to recover from a dental appointment I had three days ago.
posted by jocelmeow at 11:34 AM on January 26, 2020 [10 favorites]

And I guess, relatedly: would people feel safer talking in such a private space, or would people feel too intimidated about whether their own disability status is valid enough to join, and thereby lose access? That would minimize conflict for folks who are afraid of risking that, for sure.

Because man! It's terrifying to take these identities on publicly or try to publicly self advocate, even once identity has been disclosed. I was just speaking last night with my partner, who is back in nursing school, about whether or not it's even safe to request that their formal accommodations for classes be handled in a way that isn't singling them out or whether that will trigger, yes, abled fragility from the instructors. The class was divided randomly into groups to be seated throughout the room, and as my partner is hard of hearing and needs to be at the front, they had to move their group around the classroom several times and appear very inflexible and singled out in order to stay in a place they could fucking hear. And the group work was totally unnecessary to the purpose of the class; the mixing students randomly was apparently designed simply to "shake things up", and had the effect of disrupting my partner's accommodation and requiring them to stand up and self advocate again or else needlessly struggle beyond what the abled students needed.

It was the inverse of access intimacy, where the teachers clearly hadn't ever considered the possibility of my partner's needs intersecting with this group assignment in an unproductive way. An abled friend of ours suggested that my partner email the instructor and request that she plan things differently in the future, and my partner wearily pointed out that abled fragility would then be very likely to bite them in the ass in the future, based on similar experiences with the school and program. There weren't resources to take on that conflict, not and continue to simply be the first disabled student ever in this program and also handle everything else going on in our lives. So the only solution as they saw it (and I see it) is to just... acknowledge that it is unfair, grit their teeth, and choose battles wisely, because limited resources mean that picking such a fight might be dangerous.

On preview, I think that we might be thinking along the same lines, jocelmeow. Open question, then: consider a private Slack group for MeFites who are either disabled or... call it grappling with whether "disability" applies to them, disability-questioning. Is there interest in forming and using such a group, in addition to rather than instead of this series?
posted by sciatrix at 11:48 AM on January 26, 2020 [8 favorites]

yeah i was a little surprise-disturbed by how that AskMe went, even after multiple people explained the gatekeeping aspect of policing people's access. and i completely understand the difficulties in addressing it (especially on preview! i keep saying it takes a lot of energy to engage on this site and you explain a lot of the reasons very well; i give up a lot of times because of the calculus about how draining the possibility of conflict would be). i'm glad you brought it up here.

just immediately i can think of a handful of other threads recently that felt to me like people dismissing disabled people's explanations/perspectives so they can continue harmful behavior and that's frustrating and i'll keep trying to be better at backing people up when i can
posted by gaybobbie at 11:54 AM on January 26, 2020 [6 favorites]

Here's a fun story about placards.

At the apartment I lived previously, there was a disabled spot right next to the sidewalk leading to my door. Once I had a car and placard, I gratefully used that spot every day for years. There were others — but they were, as you'd suspect, at the sidewalks leading to other buildings. So, that particular spot was most useful for a disabled person in one of the six apartments in my particular building. I was the only one; at least the only one with a placard.

One year an old friend of mine was down on his luck and I offered him a place to stay. He was there for about a year. Not working myself, and he without a car, I was happy allowing him to use mine. I don't know if he misused the placard — I hope not. I did need him to use it when he returned home. That's an example of an actual able-bodied person using the placard in the spot for a completely valid reason. If he had to always park it elsewhere, that would have eliminated half of the placard's utility for me.

One day, I noticed the placard wasn't in the car. My roommate said it was "lost" but had no explanation for how that came to be. I told him to be sure not to park in the disabled spot anymore and I no longer did. I drove infrequently, so replacing it wasn't a high priority for me and, per my previous comment, it's really fucking hard for me to get shit like that done.

Not long after, my friend and roommate was involved in a minor accident in my car — which he didn't disclose to me. I learned of it only when the insurance company called, which pretty much blew my mind and, I won't lie, infuriated me. I told my friend he could no longer use my car.

Three days later he announced he was moving out which, on the one hand was reasonable but, on the other, I'd asked him and he'd agreed to contribute a couple hundred dollars a month because my meager disability benefit was just barely not quite covering my monthly expenses and a mere two-hundred dollars actually made a big difference to me. As a result of his sudden move, I was forced to solicit some financial help from friends and family, which was super-difficult to do, and a few months later I moved here to Kansas City. Which is a bit of a digression, but I mention it because, frankly, I'm still a little pissed-off.

But what about the missing placard? Well, I just parked my car in the next spot over. I didn't get out much, so it wasn't that big of a problem.

At some time during this period, someone pulled the entire pole and sign for the disabled spot out of the ground and it just wasn't there. The faded pavement marking still was, though.

Soon thereafter, however, someone without a placard began regularly parking in the spot. The first time I went out and came home to find no nearby empty spaces and a placard-less vehicle in the disabled spot, I was pretty annoyed. As it happened, I had to park quite far away because it was late at night and I had to walk much farther than usual. And I'd have to walk that far to my car the next time I needed it.

So, after a few weeks of this, I went out and returned one night to find only the disabled spot empty. And I thought, well, I don't have the placard but my car had literally been parked in that spot almost continuously for most of the prior three years and I figured it'd be okay, not the least because a placard-less white truck had parked there almost every night for at least a month.

As such things often go, I inevitably got immediately ticketed. I figured that it was mostly my fault — I'd ought not parked there.

And then I noticed that on the ticket the officer had written a note that, in addition to the painted marking, there was a prominent sign in front of the spot. The police officer had helpfully underlined the word "sign". Of course, all the other spots did have signs as far as I knew, but that particular one didn't. I looked out my window to double-check. Nope, no sign. Not even the pole.

My theory is that the officer wrote a number of tickets that night and, as I mentioned, the other spots did have signs. Did they not look? Did they add that bit later? Who knows? But this really rankled — it felt like adding insult to injury.

I mailed the citation where directed, notifying the court that I was contesting the ticket but I never got a response. At least I didn't get a response before I moved away about six weeks later. For all I know there might be a failure to appear warrant for me back in New Mexico. That would be the cherry on top, wouldn't it?

To sum: my friend took advantage of me and eventually "lost" my placard, some vandal tore down the disabled parking sign in the spot by my apartment, some neighbor decided that lacking the sign it was acceptable to park there, and when I, an actual disabled person, made the mistake of doing so in kind, I was ticketed and the ticketing officer wrote and emphasized something that was quite evidently untrue in an effort to ensure the judge appropriately punished me, a supposedly very deserving offender. On behalf of all disabled people, I say "Thanks! Y'all are helping so much!"
posted by Ivan Fyodorovich at 12:10 PM on January 26, 2020 [7 favorites]

The other day I told my new boss about my disability, in the vaguest terms possible, as suggested in the prior disability thread. It was a difficult conversation, made more difficult, I'm sure, by the fact that it took me like two years to work up the nerve to bring it up.

It went...fine, I guess. I did the thing you do, where you try to make it okay for the person listening to you, so they aren't too distressed by your horrible life. Keeping it vague was part of that. "A medical condition." No need to get too far into the weeds, to that time the other day I had to stop mid-conversation so I could grab my chest and try to hold on to the counter while I calculated the risk that I was having a heart attack versus a panic attack. Oh my god, where are the aspirin, I should take an aspirin, why aren't they around, where did I put them, but of course it wasn't a heart attack, just panic, and after a little breathing spell I got back to normal. I didn't tell my boss about that. Nor about the way I have to sit differently in the car now, because my usual posture--holding on for dear life, clinging to the handle, feet pressed firmly into the floorboards--was killing my shoulder. I must look much calmer in cars now, with my hands held in my lap, elbow carefully removed from the arm-rest.

So I didn't say all that, or the stuff about how I'm suddenly afraid of the mail and the phone again, and the way I'm not enjoying anything in my life anymore, and how all the fear and depression just seems here in a way that I can't avoid, as much as I usually try to block it all out. I keep getting into stupid arguments and I can't cry so I don't have anywhere for all these emotions to go.

Instead I tried to think about my boss's feelings, and kept things light and positive, I may be disabled but I'm not, like, y'know, disabled-disabled, ho-ho, not me, no reason to even think about firing me, I'm a valuable member of the team, yes indeed! I'm so used to hearing about white fragility, and thinking about straight fragility, yet it never occurred to me that there was an ableist version, except that I spent my entire life tiptoeing around exactly that. The kind of thing you know, that you're perfectly aware of it, yet until someone names it for you, you didn't even realize it, you weren't aware of what you were aware of.

All that has happened from this conversation is that I've found a whole new level of impostor syndrome to deal with. Sitting in that same seat in the car, hands carefully held in my lap, I go through all the possible logical arguments to explain why this seat in this car going to this store is possible, while business trips are not possible. Realizing how convoluted the rationale would sound. How much like a lie. As though I were making this all up, so I could get out of a task I didn't want to do. I get to feel the guilt of making it all up, without the relief of it not being real.

I was thinking just now about those posters at restaurants, you know the ones that show you what to do if someone is choking? And those videos that go around every summer, "Can you spot the person about to drown in this pool?" I'm so bad at those. I'd make a terrible lifeguard, even if I were brave enough to learn to swim. But I think about how bad everyone is at recognizing when someone needs help. Help is so out of bounds in our cultural language, we literally have to draw a stick figure choking, so we'll know what to do. It's not something we talk about. We hide it away. Everybody talks about how GoFundMe and similar projects show the horrors of capitalism and all I can think is, no, no, I mean, yes, but also no: At least someone has been given the ability to ask for help, and there's only two possible responses, click the button or don't click the button, and there's no confusion about it. Asking for help is so fraught, so terrible...and so easily missed. If only there were some kind of GoFundMe for times when you needed something other than money.

I don't know how to talk about anything. I'm caught, because I feel guilty if I get too self-indulgent with the morbid stuff, like all those depressing meirl memes, I don't want to be one of those people where everything's always bad, but...like...a lot of things are bad? And I don't know how to be honest about that, without having a negative effect on other people? Oh, wait, haha, it just occurred to me, this is the whole "burden" thing, isn't it? Literally the word didn't hit me until I was just writing this out. I'm talking in circles around it.

See, I think what people don't understand is, when you're disabled, it affects everything. If you had a condition that just affected one or two things, you'd...well, you'd call it a condition. An illness or something. That's the problem with that lack of access intimacy. People think it's one thing. Oh, I knew someone who had a panic attack once. Yes, great, but I'm structuring my entire life around the idea of avoiding pain and fear, and it's really distorting everything around me, it's like when you look through someone else's glasses and the world is curved in ways that don't make sense.

In the last thread, I mentioned my shoulder, and my torn rotator cuff has served as kind of a nice distinction between the two things. I have to do some adjusting so I don't hurt my shoulder worse than it already is. I'm careful getting things down from the top shelf. I'm careful at the gym, holding my arm just so. But it's different. I'm not having to totally restructure my life around my shoulder. The pain has mostly gone away, I've gotten some mobility and range of motion back, I'm fairly optimistic that if I'm careful, I'll be able to do most of the stuff I could do before.

But with the anxiety, I will never be able to be careful enough to make this feeling go away. There is always a new level of danger, a new level of existential crisis, awaiting me. And it's so exhausting and demoralizing to have it come back in its fullest form. Even while I'm trying to be healthy! I've lost weight! I'm exercising! I'm sticking to good bedtimes! I'm talking about my feelings instead of hiding them! I just read a really good book! I'm doing all the things! It doesn't matter. The baseline is this terror of death, and this sorrowful dread, and I return to it over and over like a dog licking itself bald.

Anyway. Enough of that. I can't stand to hear myself. I want to say to you how much I am enjoying this thread, how much I enjoy hearing other people talk about their experiences in this language. I mean maybe it's weird to say "I sure do like to hear how angry you are!" but...like...I sure am glad to hear the anger in your voices, the frustration. It's a language I understand.
posted by mittens at 12:57 PM on January 26, 2020 [16 favorites]

I was frustrated by the recent AskMe about confronting a person without a placard parked in a handicapped space.

One of the things that thread really exhibited was how when disabled people express that something is hurtful or ableist, abled people come in and tell them why they're wrong or it doesn't actually hurt them because xyz. Xyz is of course, false, or not taking into account a host of other barriers/issues. It's incredibly condescending. The dynamic that gets set up is, "I know better than disabled people how to solve their problems." And it's a very common attitude, not just on MeFi, but everywhere. Abled people just keep trying to solve disabled people's problems without actually asking disabled people what they need or what would be useful. My research focus is basically just asking autistic people what their proposed solutions are to the problems they face, and it baffles me how little research asks this question. We've finally gotten to the point where there is some research asking autistic people about their experiences and the difficulties they face, but almost never does the researcher then ask, "Okay, and how do we fix this? What do you need?"

So, if abled MeFites want some advice, maybe come in with humility, asking questions. Don't tell us what disabled people can or should do; ask us what we need. If you desperately need to weigh in on why you think a disabled person is wrong, at the very least phrase it as "I was under the impression that invisibly disabled people could get parking placards if they need them. Is there something I'm missing?" rather than "Invisibly disabled people can get parking placards if they really need them." And if you think you somehow have a suggestion that disabled people have never thought of despite it being a common problem, maybe run the idea by a disabled person who has that problem before spouting off something that may be offensive or ridiculous to people who actually experience it on a day-to-day basis (not to re-litigate that thread, but "handmade placard" sent me through the roof).

To sum: my friend took advantage of me and eventually "lost" my placard, some vandal tore down the disabled parking sign in the spot by my apartment, some neighbor decided that lacking the sign it was acceptable to park there, and when I, an actual disabled person, made the mistake of doing so in kind, I was ticketed and the ticketing officer wrote and emphasized something that was quite evidently untrue in an effort to ensure the judge appropriately punished me, a supposedly very deserving offender. On behalf of all disabled people, I say "Thanks! Y'all are helping so much!"

That is so frustrating and condescending, and another example of all the stupid little bureaucratic things we have to deal with. I have my own placard story, where I was trying to avoid the exact situation you ended up in. Back in college, the building I had night class in didn't have any parking that I could even get near via wheelchair--there were steps to get to any of the street parking. So I always had to go halfway across campus to the library, which only had three parking spots: two disabled, and one 15 minute spot for the adjacent college coffee shop. We had just gotten a car, so I was still waiting to hear back from my doctor about qualifying for a placard. My partner was working the last shift at the coffee shop, but their shift ended about an hour before my class. After closing up, they went to get our car (parked far away and not accessible via my power wheelchair) and parked it in the 15 minute spot, as I didn't want to get in trouble for parking in the disabled space, and surely there's no problem parking in the spot for the coffee shop they had literally just closed? They then walked to my building and waited there for me, and walked back with me to the car, because I didn't feel safe making the trip alone at night, and it had recently snowed and my chair would sometimes get stuck.

We came back to a ticket for parking in the coffee shop spot. Which, okay, pointless, but I would probably have accepted it (I did break the rules, after all) if I hadn't noticed something. The way the parking ticket was set up, the parking officer just checked a box for the violation, and it happened to show the fines for all of the violations. The fine for parking in the coffee shop space was $50. What would the fine have been if I'd parked in the disabled spot without a placard? $25. Apparently, it's more important that people get their coffee than disabled people can get to classes!

So yeah, I contested that, and got to see the extremely embarrassed looks on the college judiciary panel's faces when someone had to rush over and open the other half of the very narrow double doors, because my wheelchair couldn't fit through just the one they had open. They cleared the fine with no argument.

And sure, there's a way I could have avoided all that: my partner could have waited until I was out of class before moving the car, but there was no earthly reason to think that it would be a problem. If there had been non-disabled spaces there that weren't for the coffee shop, or my doctor had gotten around to responding to me, it also could have been avoided. But sometimes, life doesn't work out perfectly for disabled people, and we do what we can, and then get punished under the assumption we're just lazy abled people who don't deserve the "special service."
posted by brook horse at 1:51 PM on January 26, 2020 [10 favorites]

I hear you, mittens.

All those depressive crises I mentioned, all the times I was filled with panic and self-loathing and suicidal thoughts and I desperately, desperately hoped that someone could say something, anything to help me? I'd reach out. So frequent when I was younger; it's something I never do now. Never.

And that's because it disrupted other people's lives, that it always felt self-indulgent and melodramatic, that I knew the people who loved me worried about me and it was exhausting for them.

My thought process has been: well, it's so hard to help myself, I've never made as much progress as I've expected of myself — but the one thing I can do, the one thing I can feel good about, is that I never pull people into my crises anymore, that I'm much less a burden on others. In fact, when I do experience suicidal ideation, I find that my resistance to doing something that would be so hurtful to people I love ends up being the main argument against it. And when I do continue to consider it, I spend effort looking for ways to do it that somehow wouldn't hurt those people.

This is a very sub-optimal outcome. It's self-evidently not a good way to resolve these issues, but it's better than the prior status quo and I feel much less guilt.

Ableism is a barrier to entry and if you just don't bother surmounting it and don't complain about it, that suits everyone else just fine. If you do surmount it, you're often made to feel like you don't belong; and if you do complain about anything, you're made to feel that you're a nuisance or burden for doing so. Disability is socially constructed — and when a disabled person fights for accommodation, it's another burden to bear for people already staggering under a heavy load. When the abled take the initiative and embrace accommodation, redrawing the circle to include instead of exclude, it is so much easier and more pleasant for everyone involved. If only they knew this was so.
posted by Ivan Fyodorovich at 1:56 PM on January 26, 2020 [4 favorites]

Oof, I’m kinda shaking with - anger? frustration? I don’t know, alexithymia is a great time! - over the new Ask and responses about whether kids are safe around a teen with bipolar and ADHD. Just mentioning it here in case people want to either stay away from that Ask for your own equilibrium, or to go share your thoughts.
posted by Stacey at 2:23 PM on January 26, 2020 [9 favorites]

The Ask Stacey has mentioned. I will go there now and, based on what Stacey has said, probably flag a few things for the mods' attention.
posted by brainwane at 2:38 PM on January 26, 2020 [3 favorites]

Yeah, it's very not good.
posted by Ivan Fyodorovich at 2:45 PM on January 26, 2020

I just looked at that thread and, as a parent with bipolar disorder, I have to say I feel like absolute garbage now.
posted by thatwhichfalls at 3:36 PM on January 26, 2020 [5 favorites]

Hugs if you want them, thatwhichfalls. I keep typing and erasing and retyping my comment, I've got so much anger on the behalf of my friends and family with bipolar disorder that I can't come up with anything coherent. The insinuation that bipolar people are a danger to kids is indefensible. My grandma had bipolar disorder and watched us many times as kids. Not once did I ever feel unsafe around her, and not once was I ever unsafe around her. My neurotypical parents were much more of a danger to me than she ever could have been. Fuck. I'm so upset, but I'm sure that can't compare to what you and other people with bipolar disorder are experiencing reading that thread. I'm so sorry.
posted by brook horse at 3:56 PM on January 26, 2020 [9 favorites]

It's a bit difficult finding a way to articulate this, but what really upsets me is the tone (and occasional explicit assertion) that it's a difficult but self-evident truth that the asker's concerns have merit. You know, that validating them is "straight talk".
posted by Ivan Fyodorovich at 5:16 PM on January 26, 2020 [6 favorites]

Hm, that thread sure is full of some weird implicit assumptions, and I'm saying this as a bipolar person and a parent.

I'd guess a lot of that is just born of ignorance, not really knowing how things are for people like us, because for most of the time nobody would know that we have the condition. Medication, sleep, diet and exercise can control symptoms very well for many, and therapy can be especially useful for the down side of the pendulum, e.g. CBT.

That's why I really like the whole Mad Pride movement. Borrowing from Gay Pride, part of the idea is to come out of the closet, so to speak, and allow people to realise that the totally normal friend or colleague of theirs is actually living with a manageable condition, and not a strange and scary freak to be feared and stigmatised.
posted by UbuRoivas at 5:24 PM on January 26, 2020 [7 favorites]

That AskMe thread is one of the spaces here that I just could not bring the energy to fight back against. It made me existentially exhausted in a way that made me feel like throwing my hands up and just walking away. I still get very nervous about disclosing my mental health Stuff and diagnoses because of stigma and years of being shit on and disbelieved and mocked and eye rolled and argued with, but I am just comfortable enough here to say that I identify at least as bipolar adjacent sort of (ugh awkward to try to say things without saying them! I'm trying! And feeling ridiculous for still feeling like I can't just say it but the fear is so intense!) and the insinuations and just plain wrong and in my opinion ridiculous remarks in that thread hurt me deeply on a level I didn't expect. It made me nauseous. It made me feel like crying. We're all out here just trying to do our level fucking best and this is what people think of us. It's heart-rending.
posted by fairlynearlyready at 6:01 PM on January 26, 2020 [9 favorites]

Well, flagged a comment that was extremely blatant in its ableism and it was deleted in a few minutes. We'll see about the rest of the thread.
posted by brook horse at 6:32 PM on January 26, 2020 [4 favorites]

Mod hat on briefly to check in about that daycare/teenager Ask: I've been reading through it, reviewing flags, and trying to basically figure out a strategy for a mod note. We've deleted a few things in there and there's a couple others I'm still looking at to try and make up my mind about.

My feeling is there's two distinct things at play: some unexplained, unfounded, or outright erroneous assumptions built into the question text itself, and the texture/content/priorities of some of the answers responding to the question. For the issues in the question itself, it's a question for me of: is this problematic enough to have deleted and had the asker rework/reframe their questions, or is it better to let folks in the answers explicitly address those issues in the answers and try and help the asker change their understanding/assumptions? For the answers, that's something where we can selectively delete stuff and also try and steer with a mod note; we've done some of the former today (and, yeah, I nixed another a few minutes ago), and I'm thinking about appropriate content and phrasing for the latter.

I'm (mod hat half-off for a sec) kinda running on reserves tonight on what's turned out to be a surprisingly busy/complicated Sunday on the site, so it's slower going sorting it out than I'd like. I appreciate the patience, and the discussion and the help trying to navigate this.
posted by cortex (staff) at 6:40 PM on January 26, 2020 [9 favorites]

I definitely figured that was the conversation (I just typed 'cortex', also running on reserves haha) y'all were having, cortex, and I think it's an extremely valid one that might deserve its own MeTa at a later point--do we leave up problematic asks w/the purpose of education, or delete them to protect marginalized users? I don't expect you to have an answer to that at the drop of the hat, and I'm not sure I have an answer myself, though in the immediate rage reaction my brain is going "DELETE DELETE DELETE" but that might not actually be the correct course of action. Appreciate the check in and the work you're doing. Best of luck and hope you get some time to take care of yourselves tonight.
posted by brook horse at 6:43 PM on January 26, 2020 [4 favorites]

It is possible that some of the people in this thread would not fully approve or agree with my response in the teenage son ask. That said, I appreciate the speed with which cortex deleted an especially nasty/ill-informed comment I (and perhaps others) flagged.

cortex, I found several of the push-back comments very powerful. I can’t speak for everybody in this thread only myself, but I’m not convinced the thread should be pulled. I thought the range of responses was telling and the pushback on the ableism truly educational. For that reason, I would like to see the thread stand. But I am not a parent with bipolar disorder who feels like someone kicked me in the stomach, so my views may not be helpful.
posted by Bella Donna at 7:00 PM on January 26, 2020 [3 favorites]

UbuRoivas, I had never heard of Mad Pride before. Totally checking it out. Thanks so much!
posted by Bella Donna at 7:07 PM on January 26, 2020

Left a note in there that I hope is coherent.
posted by cortex (staff) at 7:11 PM on January 26, 2020 [5 favorites]

Thanks, Cortex. I appreciate your input here. FWIW, while there probably is a larger conversation to be had, in this specific case I have no issue with the question being there as long as we can allow pushback; the totality of questions and responses was what really upset me earlier. The balance of responses is better now (or was, last I looked.)

But I am a loved one and sometimes caregiver for someone with bipolar, but my own diagnoses are different, so I'd gladly stand aside for other opinions from people more directly affected.
posted by Stacey at 7:19 PM on January 26, 2020 [2 favorites]

Bella Donna, it's almost never been mentioned here before, which is quite amazing.

There's even a course about it at NYU.

I've been toying with creating an FPP about it, although if anybody else wants to run with it then that's OK also.
posted by UbuRoivas at 9:41 PM on January 26, 2020 [8 favorites]

I've been thinking about this thread and meant to come back earlier, but it's been a week.

I'm so sorry to see that kanata has left, hopefully temporarily. I really value her perspectives - especially on that intersection of class and disability (and crochet) and also calling us out on US-centrism. And I like her writing style and what comes across of her personality. I'll miss her if she stays away, though obvs I hope she does what's best for her.

I will say I also found the access intimacy stuff a bit alienating - absolutely no point intended towards those who find it useful and are excited to think about it, it's just not for me. Hopefully we can accommodate lots of perspectives here.

Cortex, I admire your honesty in what you've said here - tremendously difficult when you have a particular standing in a community.

Thanks to those of you who've answered or flagged in the Bipolar teenage son question.

I'm starting to think about how the disability of family members is affecting me and additionally working with my own disability ... my father has Alzheimer's dementia and I spend two days a fortnight with him in London on a research project, which I find really tough. The journey back last time was hard partly to do with my own disability and I'm thinking about ways I might be able to ask the research people how much they would fund other ways of transport to make it easier.

Sorry, I've gone slightly random here, but a book I found useful in helping me think about disability is Passing for Normal by Amy Wilensky.

One thing that nagged at me when I looked through questions tagged disability earlier was the couple of people asking about representing disability in fiction they were writing - what sort of disability should I give my character? The questions I looked at were pretty sensitively phrased and I don't want to suggest that people should not be writing about disability of course. But it just twitches at me somehow in a kind of "tell me your stories and I will glue them on to this character I'm writing" kind of way. I am being over-sensitive.
posted by paduasoy at 11:41 PM on January 26, 2020 [4 favorites]

When the youngest was seven someone went around the apartments near us and told them a dangerously crazy person lived in our apartment. She asked me why her friends weren't allowed to play with her anymore.
I've had CPS turn up, multiple times, because someone gave them a call. They were very nice and went away each time when I signed a medical release so they could check I was taking my meds.
I have been told, to my face, I had no right having kids.
Even when I try to keep it quiet it always, always leaks.
posted by thatwhichfalls at 4:37 AM on January 27, 2020 [8 favorites]

I'm so sorry that has happened to you, thatwhichfalls.

My partner leans toward the 'open disclosure' end of the spectrum partly for Mad-Pride-like stigma pushback reasons. But no one should have to share their personal medical details if they prefer not to for whatever reason, being a parent of course complicates that decision, and I'm sorry that your choice and privacy has been disrespected in such a hurtful and violating way. You deserved better and more respectful treatment.
posted by Stacey at 5:39 AM on January 27, 2020 [7 favorites]

On flagging:

A few times in these threads, people have said "I have never flagged a comment" or similar statements. I know that for some people, it's scary to click on something they've never clicked on before, especially something that might lead to an interaction with authority figures. And the Frequently Asked Questions about flagging are useful, but I know that some people appreciate a step-by-step guide to an unfamiliar process.

So I added more details to the "Flag" page on the MetaFilter wiki, and Pronoiac let me upload some screenshots so you can see what it looks like when you flag something.

Moderators rarely contact you to ask for an explanation of why you flagged something or tell you whether they took any action on your flag. Also, assuming the mods' process is still pretty much how it was when they were talking about flagging in 2011, most of the time they don't even look at who is flagging something, just that someone flagged it. In case that helps you worry less and flag more. (Mods, please correct me if I am wrong on any of this!)
posted by brainwane at 6:41 AM on January 27, 2020 [14 favorites]

thank you brainwane!!! that helps a lot
posted by gaybobbie at 9:23 AM on January 27, 2020 [1 favorite]

brainwane's got it right, yeah; flagging is a really useful tool for us, and very rarely something we actually need to look up let alone follow up with a specific user about based on the fact that they've flagged stuff. It's totally okay to just give something a flag because you're in a "man I wish someone would look at this" sort of place on it, without having to do any other calculus about it. That's what they're there for.

The handful of times I've reached out to someone about a flagging habit it's always been more of a "hey, here's a heads up on what's useful vs. not for us" than anything, and that generally has only come up with folks who are flagging a whole lot more than average and isn't a great big deal in any case.
posted by cortex (staff) at 10:37 AM on January 27, 2020 [2 favorites]

So someone I love won their disability case And found out about it today. And instead of being thrilled they are feeling bummed. Their self-esteem took a hit for having it officially confirmed that they are unsuccessful in life. That is their phrasing, not mine. This internalized ableism stuff is so insidious, I think it is kind of like fish and water or me and oxygen. Anyway, I was forced to go to a 6-week ADHD course in order to get additional help with it (apart from medication). I was super resentful but in the end it turned out to be helpful mostly because sitting in a room with more than 20 other people with various flavors of ADHD made it so obvious that my neurodivergence was not the result of personal failings or a lack of character. I wish I didn’t need that reminder, but sometimes I do.

Hang in there, everybody. There’s a super corny reading in Al-Alanon that I find wonderful. I think it’s from the closing reading and it includes this part for newcomers: “Although you may not like all of us, you will come to love us in the same way that we already love you.” On this particular day, which has had some extra challenges, I am especially grateful for MetaFilter and for this and other threads that make me feel welcome. Thanks, folks!
posted by Bella Donna at 2:57 PM on January 27, 2020 [10 favorites]

Thanks for this thread as I don't comment much but I do read the replies. I'd be interested in a Slack invite if a group is created someday (is it similiar to discord?).
posted by chrono_rabbit at 3:59 PM on January 27, 2020 [4 favorites]

Commenting to say that I would also be interested in a Slack if one gets created.
posted by heurtebise at 4:50 PM on January 27, 2020

But like...what are these useful differing opinions that you want to hear? Do you have an example other than the "isn't really a disability" kind?
posted by mittens at 5:39 PM on January 27, 2020 [7 favorites]

I haven't seen the mods delete anything just because it's unpopular or controversial. I've seen them delete posts because multiple users of a marginalized group have stated that they are harmful. Perpetuating stereotypes about mental illness is harmful. Telling someone their disability "isn't really" a disability is harmful. Comments like those actively harm MeFi users. Saying "I ascribe to the medical model of disability" or "I use person-first language" is unpopular in a disability activism context, but not directly harming other disabled people unless you insist they can't ascribe to the social model or use identity-first language. I've never seen comments like those deleted.

Also, as a disabled person, I am hearing different opinions all the time. The opinions of abled people are inescapable, and MeFi is where I come when I don't want to have to relentlessly defend my right to exist. There's plenty of other places to get differing opinions, and I still get plenty of differing opinions on MeFi. Just less of the ones that actively attack my personhood and dehumanize me.
posted by brook horse at 5:40 PM on January 27, 2020 [17 favorites]

Hm, I respect the want to hear different viewpoints. I think that's part of what I meant by how we could not realistically accommodate all wants since they were at such opposing ends sometimes. (The clearest example still being, should a NT person explain how they will be an ally or just be silent? I know people who believe one or the other, but clearly that cannot be accommodated in the same thread as they are completely opposite.)

But I, like mittens said, am not sure what "your disability isn't real" would bring to a discussion. I'm sure there are other examples, but personal/identity attacks shouldn't be allowed on Metafilter. We wouldn't allow someone to be racist or transphobic just as we wouldn't allow someone to dismiss disability. The difference is in a trait vs. say a preference that you could have an opinion about. If you hate mustard, go have a heated debate about how it sucks. We don't need people to explain why they hate a particular race, trans people or think a particular disability is not real.
posted by OnTheLastCastle at 7:39 PM on January 27, 2020 [5 favorites]

I think I'd talk more here about myself if it wasn't accessible to a search engine. I'm very worried that, when I finally have the spoons and meds and therapy and ability to get back to working, hopefully soon, someone will google gryftir because it's related to me, see this, and decide not to hire me. I'm very worried that having struggled with my disabilities and not having found work after being laid off, I may never get another job. I don't know how realistic those worries are, my brain regularly distorts my perceptions and anxieties, but I know they have some basis in fact. Able people (and privileged groups generally) have this very narrow normative set of expectations around behavior, and anything that differs is bad. I'm worried on preview that I talked too much, but I'm trying not to over-analyze and rewrite so much.

But, I'm also proud of myself. I'm keeping going. I dealt with a bunch of drama as a staff member in a hobby organization, with at least one if not multiple other non neurotical people involved, and I did very well, with no support from anyone, and it was very draining, and it wasn't necessarily the healthiest choice, but damn, I'm proud of myself for doing it well because it's not easy, a lot of skills involved don't come naturally.

I'm not giving up on friendships, on dating, on finding a job. Giving up was my childhood coping strategy, and it's still very easy to give up on the few spoons I have and just curl up in bed. Oh so easy. I'm also upset with myself because there was something my therapist wanted me to try, and I completely bailed on it, and I knew in therapy that I was going to bail, but I instead committed to trying it. And I don't think my therapist is going to judge me, but I judge myself.

This thread also helps me be a better person, to think more about the needs of others, in addition to thinking about my own needs. I don't regularly think about wheelchair access as much as I should, and I'll try to do better. I do think about sensory overload because I have my own issues, but I don't necessarily remember to generalize them, and I appreciate homo neanderthalensis's thoughts on that for reminding me (and the pineapple mint they gave me, and the talk we had at that meeting). Also I too find costco a little soothing compared to trader joes, except that it's a little loud at times. I often use Safeway, even if it's slightly more expensive, because it's open until midnight, or for one store in SF, 24 hours. late night is better for me.

I want to thank everyone who is participating in this thread, and everyone reading it. In particular brane wave for messaging me, expressing appreciation for my past thoughts in a previous meta post, and inviting me to participate in this one, which I probably would have missed.
posted by gryftir at 8:54 PM on January 27, 2020 [12 favorites]

This is a great FPP that I wish had more discussion over the actual meat of the articles (about a few robot and AI situations where disabled people are an afterthought, if thought about at all) rather than just jumping to more generic criticisms of AI and capitalism.
posted by mittens at 5:52 AM on January 28, 2020 [8 favorites]

Last night I went on a Tinder date. That was a first. Tinder is not really my jam because it's all about the photos and even if I were motivated to go to all the trouble for a one-time hookup, which I'm mostly not, the disability issue will have to be dealt with first thing, there's no avoiding it. Well, no need to talk about my mood disorder yet, obviously, but as soon as you see me walk, with a cane, or even just move, you can tell something's wrong. I walk and move like someone in his late seventies or early eighties. I'm not going to be out on the dance floor and, um, let's try not to think about how this affects sex.

So. Notwithstanding we're on Tinder, I've been acting like an OKCupid guy and spending a few weeks exchanging some information and agreeing on a meet. One of the things she mentioned on that minimal Tinder profile was that she liked live music, so I'd been just mentioning some shows that various artists I listen will be doing around town in the next few months. But we eventually just settled on meeting in a jazz club — Kansas City has a long history with jazz.

And so how I handled it was to say that I had a condition that caused advanced osteoarthritis and that I couldn't dance or anything, to set expectations. The day before yesterday she sent me a very endearing message about how she hoped I wasn't nervous and she thought we'd be delighted and intrigued with each other. I took the opportunity to reply that I was a little nervous because I feared she wasn't aware of the severity of my health issues. She predictably wrote something reassuring in response, and mission accomplished, expectations realistically adjusted.

The date was delightful — there's no avoiding some awkwardness, but that aside it was probably one of the two or three most enjoyable first dates I've been on.

Our server, she actually got on stage and sang a couple of songs and was pretty good. When we sincerely told her we enjoyed it and that her expressivity was especially notable, she was embarrassed but clearly very happy for the praise.

With my date, our conversation was never one-sided and it made me happy to validate her feelings and support her decisions, which it seemed to me she doesn't get enough of. I disclosed enough to provide a fairly complete outline of who I am and where I am and she seemed accepting; the things that are attractive about me possibly compensating a bit.

I felt like a more real person than I have in a long time. Or, perhaps, more a living person. The last thing she said to me before we parted ways for the evening was a kind of impulsive blurting, "You're handsome — I think you are handsome and that's why I swiped right." I most certainly did not expect that particular compliment and, you know, it was unexpectedly meaningful and encouraging to me because between being late middle-aged and gone to seed, and being physically disabled, it's not how I think of myself at all anymore, if I ever did.

When I got home, I was so incredibly tired. And hurting. It was all I could do to get my clothes off and collapse into bed.

There's nothing I want and need more than to get out of the house and actually live life. I really don't know how much I can do. But I want to give it a try.
posted by Ivan Fyodorovich at 8:11 AM on January 28, 2020 [39 favorites]

Holy shit, Ivan Fyodorovich, that is the happiest news! Way to go!
posted by mittens at 8:19 AM on January 28, 2020 [9 favorites]

I think I'm just jaded and tired out in a lot of ways but I wanted to participate and share some thoughts. I'm very neuro-atypical (multiple/diagnosed DID/PTSD).

I'm just coming out of the midlife U-curve, I think (I am maybe 5-7 years behind myself in some ways for various reasons, so perhaps I'm not yet at the bottom of the U) and so that's a lot of my tiredness but one thing that has struck me lately is that my life went like this:

- dissociative even to myself, so my growing up experience was fragmented and weird
- the process of coming out and understanding that and developing better understandings and responses
- coming out to friends and family and experiencing sort of large spikes of acceptance and rejection + a lot of activist energy and writing and finding other multiples, etc.
- learning to build the life I/we want better given all the constraints
- recognizing that very, very few people will ever understand my/our experience of living and basically mostly giving up on the kind of intimacy you get when you interact without a filter.

The fact is that I am lucky in having 3-ish people in my life who want to get the entirety. But we're kind of increasingly a little mournful that we will always interact with a filter. Even simple questions of opinion are fraught because one of us might like chocolate and another person can't stand it. And most people can't hold that in their minds for us (or else it's a very LONG process, who's present, how do they signal that, how do they make their likes and dislikes known, who remembers that...and it's stressful on the other person.)

So we have muted our selves down to the lowest common denominator a lot of the time when it comes to relating to other people, and that's had an impact. I think that's kind of our current access struggle, it's really a question of accessing ourselves and being in the world. And what with working and parenting and stuff, there's just no time.

One thing that nagged at me when I looked through questions tagged disability earlier was the couple of people asking about representing disability in fiction they were writing - what sort of disability should I give my character?

OH YEAH. Back when I was very involved in multiple activism on mailing lists and maintaining a blog I dealt with "will you talk to me so I can make my multiple personality character great?" all the time. I always felt torn because I wanted to improve representation (and in fact, one of the best fictional representations, Matt Ruff's Set This House In Order came out of his exploration) but it was so tiring to be treated like a stock character.

Recent ask

I just wanted to share a formative experience I had on a multiple support community that was pretty heavily activist in nature. It definitely was ableist, which was partly due to the times, but also a real source of support. Anyways, a multiple system posted that their therapist had reported them to CPS for being multiple and a risk to their daughter and everyone exploded in support, including me. A few days later that same multiple system reported to the community that there HAD been a serious risk to their daughter.

It was such a deeply jarring experience because a lot of people who don't understand multiplicity are going to freak out about it with respect to their kids and if you look at it even from a self-knowledge aspect how can someone who has been that dissociative ever make assurances that take self-and-selves awareness. This was our favourite therapy topic for years leading up to the birth of my first child, just for ourselves. It's a tough one.

It's made me personally gun shy about providing individual reassurances just the same as I don't think there should be blanket concerns, if that makes sense. I'm not saying this to spark controversy; I personally was trying to get that parent to look at their safety concerns as part of a global approach and not focus just on that one word 'bipolar.' But I wanted to share that whenever I have treated people with a diagnosis as a monolithic entity in any direction it's been wrong.
posted by warriorqueen at 8:32 AM on January 28, 2020 [6 favorites]

In response to seesom's comment above (and I'm sorry this is so long; I'm boldfacing for better ease of reading):

Hi, seesom! I am glad you are here, and I appreciate you sharing your thoughts, and I thank you for working to talk with everyone else to both support having a supportive atmosphere (on MetaFilter in general) and to talk about what you find discouraging.

One thing I noticed is that you spoke about "the usefulness of having different perspectives" and said:
I find it useful to hear differing opinions, I don't want to be in an echo chamber of like-minded people.
I am a little unclear on whether you're concerned about MetaFilter in general becoming an "echo chamber of like-minded people," or whether you're saying that this particular thread is not particularly conducive to the kinds of conversations you'd like to have.

In this thread and in previous disability threads on MetaTalk, we have seen some diversity of perspectives. Some examples: people finding "access intimacy" particularly useful or useless as concepts, the expression of anger being constructive or destructive to conversation, whether moderators should correct people publicly or privately, about whether the neurotypical parents of autistic children should have room to speak in threads about autism, and so on. I recognize that these may not read to you as major disagreements. But, just as it may have been a bit scary for you to wade in and share your disagreement in your comment just now, to ask for what you want, it took fortitude for other people to ask for what they wanted, and engage in conflict.

When you said "echo chamber" it reminded me of something the late rtha said in the big emotional labor thread in 2015, and something Aya Hirano on the Astral Plane said in a MetaTalkthread about discussions of racism also in 2015. Those comments talk about how useful it can be to have threads where people agree on fundamental principles and believe each other by default, and push back against insinuations that agreement is sanitized, sterile, unproductive.

I do not think you are like the man rtha was talking about, or the person Aya Hirano on the Astral Plane was responding to. I am guessing that you recognize that it's useful to have specific spaces like this thread, "a conversation that spawns epiphanies, new strategies, opens windows, and allows for the sharing of experience". (But I could be wrong; please tell me if I am wrong.)

I think you are concerned about the rest of the site becoming "an echo chamber of like-minded people." I think what you mean is MetaFilter in general -- that you want to make sure that, in Ask and on the blue and everywhere else on the site, it's actually okay for MeFites to have and share diverse opinions, including ones that do not fit with, as you put it, "the current thinking by disability theorists and the disability activism movement". And I understand and can sympathize with that. I think one trouble spot here is that the example you mentioned is one that, if it were said to approximately any disabled person I know, would sound really demeaning, condescending, and invalidating:
IRL, people have had told me that my disability 'isn't really' a disability. I'm sure such a comment here would be deleted immediately.
It sounds like you valued hearing that comment, which I would like to understand. Could you talk about that, while keeping the focus on your own experience? Was it useful information? Was it the start of a dialogue that helped you educate your acquaintances, or helped you think about the category "disability" better? Did it give you a perspective that helped you live your life better?

And, in a larger sense, I'd like to know your perspective on the point, the usefulness, of disagreeing in a conversation? I presume that we're trying to teach each other, understand each other better and, maybe, persuade each other. And the example you've mentioned, "your disability 'isn't really' a disability," is hard for me to understand as a conversational turn that will likely teach, understand, or persuade anyone. In my experience, unless I know someone well and have a trusting relationship with them, it's pretty hard to engage in Socratic questioning or other argument about categorizing their own identity and experiences that will actually persuade them. Only when someone's opted in to that kind of vulnerability, to being changed (like on the "changemymind" subreddit, for example), will an online stranger have a good chance of changing their mind about what they're going through.

Then again, maybe I'm missing something? If your experience here is different from mine, I'd like to know. For example, maybe I am over-privileging the vulnerability of commenters, and under-estimating the benefit, to non-commenting readers, of reading a broad variety of opinions, including ones that many disability activists don't like.

But here I think we come back to -- what are some examples of opinions/perspectives that disability activists wouldn't like, yet are not demeaning to disabled people? And maybe here we come to the difference between descriptive and prescriptive, and the difference between talking about one's own experiences and making policy suggestions or assessing other people's lives. I recognize that Ask MetaFilter is a particularly hairy place for this distinction, since it's literally a place for commenters to assess others and prescribe action!

Which brings me to another thing you said:
So, after last night, I am pretty sure that this comment is going to be deleted.
Can you talk a little bit more about what caused you to think that the comment would be deleted, and whether you have had cause to re-think that level of certainty?

You mentioned "after last night" -- are you unhappy about the turn of events in the Ask MetaFilter thread we were discussing, the one about a parent's concern involving their child's daycare situation?

Because yeah, I think that was messy, for the reasons cortex stated in his mod comment there, and because of the reason warriorqueen just mentioned.

This comment is so long already! If you've read this far, thank you. I appreciate you working alongside everyone here to figure out what MetaFilter can and should be. I hope you are being gentle and kind to yourself, and that it is easy for you to have your needs accommodated, and that you will be able to talk more about your experiences here.
posted by brainwane at 9:08 AM on January 28, 2020 [9 favorites]

I want to highlight something in brainwane's comment because I think it's important to reading all of our messages: let's assume we're each acting in good faith and our questions or thoughts are not traps or attacks, but they are genuine calls to respond with your thoughts and experiences.

Certainly people can act with ill-intent, but I am going to assume we all are not unless someone is quite aggressive/dehumanizing. It's okay to express your hurt, confusion, etc. as they relate to you.

It's the difference between "I find this line of thought upsetting or detrimental because..."/"I disagree, and here is why..." vs. "You are for that comment you made."

A large part of my mental health routine is to consistently ground myself in the first mode rather than the second one. If I don't, I see enemies literally everywhere and in every thing.

posted by OnTheLastCastle at 9:53 AM on January 28, 2020 [6 favorites]

I just saw this thread ("Dear abled parents of disabled kids... ") (in ThreadReader) by jendatabasegeek. In it, she says to some parents, "You've become so wrapped up in the idea that you have to protect your child at all costs that any suggestion about letting your child make their own decisions becomes an attack. And we get concerned about whether or not you will listen to your child when they voice an opinion" -- I get the sense that's an experience some of you have had, as disabled children....
posted by brainwane at 1:04 PM on January 28, 2020 [4 favorites]

Well, yeah, I experience that to this day as a 55 year-old man with a 74 year-old mother. It's not just her, but she's by far the worst offender because she just can't get her head around that loving someone isn't inseparable from worrying about them which, in turn, justifies doing or saying disempowering things. Given that disability itself is already essentially disempowering, this is a cruel irony.

She's not actually that bad about doing this sort of thing to either of her children; I've frequently seen much worse. It really bothers me, though, that she can't even really follow the reasoning that there's something problematic going on.

She was always the competent and safe parent relative to my dad's abuse. But neither of our parents were ever much able to fully and deliberately put their children's welfare over their own neurotic impulses. I've always thought this was partly because they were very young and unintentional parents and they started off parenting very immature and in a troubled relationship. My sister was born when I was ten, and from the beginning, I basically had the words "her welfare comes first" written in fire in my brain and that governed all my interactions with her when she was a child. I pretty much instinctively feel this way about all children to this day.

When I was in my twenties and my sister was in her teens, my sister's hip became dislocated from an apparently minor slip-and-fall. She had a lot of pain, but we always have pain. But she couldn't walk and was insistent there was something quite wrong. Our father was out-of-town on business. My mother called him for advice on what to do instead of, you know, taking my sister immediately to the hospital; and my dad being both abusive and having deep, unresolved issues about passing on to his children a genetic illness that had distorted most of his life, yelled at my mom that my sister needed to just learn to deal with pain and not think everything an emergency. My mom subsequently called me, in tears, for advice and although I understood her fear of my dad's wrath for doing the wrong thing, I was just boggled and aghast and said, a bit harshly, that "your daughter is seriously injured and in pain and that is the only thing that matters — take her to the hospital right now."

It's really hard to be a parent — I understand that as well as I can without being a parent myself. And it's ubiquitous for parents to struggle with their own issues in ways that place their children's welfare as secondary.

But this is amplified with parents of sick children, especially when they're chronically ill or disabled. This hits parents where their deepest fears live and, especially, makes them feel powerless, traumatizes and overpowers them. I get it. I do. But when it comes down to it, they have one job, and that's protecting and nurturing these children they brought into the world. With sick or disabled children, the job is that much harder, but also that much more critical.

Parents can educate themselves about what parenting a disabled child means, what kinds of resources that may be available to help them work through the confounding issues, get support from other parents facing similar challenges, and develop parenting habits that help everyone involved. You don't just go with your gut-instinct of love and protection as filtered through your fears and insecurities to initiate some response that — let's be frank — most likely chiefly makes you feel better. No, you educate yourself and listen to what your children tell you and proceed from that basis.
posted by Ivan Fyodorovich at 3:05 PM on January 28, 2020 [4 favorites]

Ivan Fyodorovich, I agree entirely with you. The only reason I’ve been able to forgive myself for parenting sins involving my own fears and insecurities is that I did not know what I did not know. At the time, I did my very best to educate myself and to protect my daughter to the best of my ability. But my ability was limited and inadequate; so were the resources available to me at the time. That doesn’t relieve me of my responsibility. That does not get me off the hook in any way. It is still true, however. I did my best, and my best was inadequate.

I think of my damaged parents, I think of myself, I think of my adult child who is raising children. The disability part I am learning to manage and accept. The seemingly unnecessary pain and damage? I have to believe that my parents did not inflict any of that on me deliberately. That doesn’t absolve them any more than I am absolved for my poor choices as a parent. But it helps me cope with my memories of the shitty stuff. YMMV.

Hugs to anyone who wants them. I just spent an hour with a hospice social worker trying to figure out what few pleasures life might still hold for my dad. My main goal before I leave for home is to get the nursing facility to serve my dad vanilla ice cream, which is the only kind he likes, instead of just randomly handing him whatever.

My dad cannot communicate well courtesy of his most recent stroke. But he is the one who noticed when a table mate, who needs weighted utensils to eat, was eating with his hands because nobody gave him those weighted utensils. My dad started grunting and pointing toward an orderly and pointing at his table mate until the orderly figured it out. Today at lunch I got myself some water and the same table mate, a guy named Ed, asked if he could have some water. I handed him my untouched glass and went off to get myself another one. The staff just fucking completely forgot to give Ed and the third man any beverages. My dad got his milk because I was sitting there harping about it.

Everyone who works there has been kind but it’s clear that the system is broken or sloppy or understaffed. Everyone who lives there is disabled in one or multiple ways. About 25% of the residents are part of an outside hospice program. Every visit makes me think about class issues, about disability, and about my passionate hope to die in a different situation than the one in which my father finds himself. So hugs. Lots of hugs would be good.
posted by Bella Donna at 4:01 PM on January 28, 2020 [10 favorites]

Bella Donna - hugs. I hear you about the vanilla ice cream.
posted by paduasoy at 12:56 AM on January 29, 2020 [1 favorite]

I may be disabled but I'm not, like, y'know, disabled-disabled, ho-ho, not me, no reason to even think about firing me, I'm a valuable member of the team, yes indeed!

this. this. this. when i was hospitalized and diagnosed with heart failure, i made the very bad mistakes of a) being open with my employer about it, and b) making light of how very fucking serious it was so that they wouldn't fire me.

the company is so small that neither ADA nor FMLA protections apply. i took 2 whole weeks off "to recover" and then was back at work, continually downplaying the seriousness of my illness. i downplayed it so well in fact that coworkers don't understand/care that sometimes i just can't. and every time i'm like "i have heart failure guys" they're like "that's no excuse har har har!" and because we're so small, i can't MAKE them care with legal stuff.

i don't think of myself as disabled, even though i totally am. i don't think of myself that way because i still go to work 45 hours a week, and i still do all the things that need doing (mostly), and i've tried not to alter my life too much to accommodate my new reality. unfortunately, i think i'm stuck now. if i had it to do over i would not have been so open with what was going on with me, i would have vaguely made clear the seriousness of my disability and that it is, in fact, a disability. but i'm stuck. and, since laws don't apply, fuck me anyway.

i also don't know if it's okay to even think of myself as disabled? like, i have heart failure and that causes me mobility and accessibility issues, but so does my extreme morbid obesity. and i certainly don't want to claim "being fat" is a disability. but when people look at me all they see is fat, not heart failure. and when i had a handicapped placard for parking (temporary, woo) i got called out for being a scammer and wanting it because i was fat and lazy, when really it was the fact my heart was working at maybe 10%.

and, i'll stop rambling.
posted by misanthropicsarah at 2:27 PM on January 29, 2020 [21 favorites]

Internet hugs to everyone in this thread.

After waiting a month, I finally heard back from the therapist’s office about getting an online ASD assessment, and I’ve paid for the first part, so I guess I’m actually doing this. I’m super nervous and hoping either a positive or negative result will be helpful.
posted by daisyk at 4:48 AM on January 31, 2020 [8 favorites]

There's a current Ask about disabilities for creative writing. Seems to be going ok, with some pushback and discussion about language.
posted by paduasoy at 12:36 AM on February 4, 2020

i also don't know if it's okay to even think of myself as disabled?

There's so much searching for validation, when you're disabled. If there's one thing this thread has taught me, it's even people where you're like, yeah, that person is way disabled, also have doubts about whether their condition 'counts,' whether it's bad enough, whether they should just pull themselves up by the bootstraps.

I remember sitting in my doctor's office--not even my doctor, just some random doc my mom found for me, someone who could fit me in that afternoon in the days before urgent care clinics came to town--and he was this kindly, youngish guy, who laid out what a panic attack was, and even though he was so totally, laughably wrong when he said the condition often goes away after a few weeks (so, so wrong), that validation was like the sun breaking through stormclouds. Oh, there really IS something wrong with me! Which is kinda silly, right, because I already knew something was wrong with me--I'd been to the ER twice, I was missing school, I was sitting around for hours, clutching my chest, waiting for the next attack to hit--it's just, he gave a name to it, he put some parameters around the wrong. Nothing had really changed, except some stranger who had an open slot in his afternoon validated me.

And similarly, when I applied for social security. By the time I did that, I'd lost a bunch of jobs, I was dead broke, unable to leave the house, unable to answer the phone or get the mail or cook or anything. I couldn't eat, for fear that my food was infected or poisoned. (Ironically, I could still smoke, which was literally poisoning me...) I couldn't drive because I was convinced the car would break down, leaving me stranded. And when the acceptance letter came in, saying the government agreed I was disabled, that was validating too. Even though nothing had changed, except I'd managed to navigate some bureaucratic process.

For some reason, that sense of validation kept having to come from outside. Which is so silly.

You, of all people, know how your heart affects you. You know your limits, you know which things you used to be able to do, that now you cannot. It's okay to think of yourself as disabled. You're not taking up anyone else's accommodations by thinking of yourself that way--hell, you're not even getting enough accommodations, it sounds like. And yeah, the fat adds a layer of cultural difficulty, because daaaaaamn people like to make that into a moral issue even when they say they're thinking about one's health. But however others think of us, or how systems think of us, we're the ones who know what limits our bodies and minds have placed on us. So it's okay to think of yourself as disabled, of course it is. It's okay to think of yourself that way, and still work, and still try to do everything you used to do, as well as you can.

And maybe you won't want to think that way. Maybe you'd prefer to describe yourself in some other way than disabled. That's fine too. But the word, the label, the way of thinking, is there if you find it useful, it's yours if you want it, if it helps.
posted by mittens at 3:48 AM on February 4, 2020 [10 favorites]

There's a current Ask about disabilities for creative writing.

i saw this and remembered a comment probably in one of these threads about someone going back through askme and seeing several like this and being bothered by people, like, shopping for disabilities or asking for people's life stories so they could use them for writing, but i still don't have the spoons to find it (doesn't look like it was this thread, but apologies if i've missed it). anyone able to link it or have any current thoughts about it?
posted by gaybobbie at 8:29 AM on February 4, 2020 [1 favorite]

gaybobbie, it's in this thread, from paduasoy: "One thing that nagged at me when I looked through questions tagged disability earlier was the couple of people asking about representing disability in fiction they were writing - what sort of disability should I give my character? The questions I looked at were pretty sensitively phrased and I don't want to suggest that people should not be writing about disability of course. But it just twitches at me somehow in a kind of "tell me your stories and I will glue them on to this character I'm writing" kind of way. I am being over-sensitive."
posted by jocelmeow at 8:39 AM on February 4, 2020 [2 favorites]

Thanks, jocelmeow. And warriorqueen's comment after mine.
posted by paduasoy at 9:26 AM on February 4, 2020 [2 favorites]

Since I'm the commenter on the current creative writing thread who was the first to push back against that language, I want to share some of my thoughts. I'm also disabled - specifically I have Usher Syndrome (basically born hard of hearing and slowly going blind).

I have to say that it made me a little uncomfortable to even have to bring it up. And I spent some time thinking about whether to be gentle in my approach (which was ultimately my decision) or to say something different. Mostly, I didn't know if I should write a long comment about how, if a person is already that clumsy and clueless with their language around disability, whether or not they should even be writing a story that has a disabled character in it at all. Especially because they were asking for which disability would work in their predesigned context. I wanted to write about how they need to spend time doing real research. I wanted to ask if this was going to be a minor, major, or the main character of the story. I wouldn't mind them writing a minor character but maybe this author should not be writing this story if it's the main character and they don't seem to understand what they're talking about. All they had to say in their question was, "this character has an invisible disability." They chose instead to clumsily explain what an invisible disability is and used inappropriate language to do so.

So all of that was going on in my head when I wrote my short response. And maybe I could have written all of this in that thread but then that seems like a potential derail. Askme isn't necessarily designed for that. And after the debacle of that recent metatalk, I didn't want to risk another potential fragility response.
posted by acidnova at 12:12 PM on February 4, 2020 [11 favorites]

acidnova, I get it completely...and I thought all of the same things as you. I also wasn't sure about interjecting when I didn't want it to go really badly. But I thought your comment was well done and much needed.
posted by fairlynearlyready at 4:07 PM on February 4, 2020 [4 favorites]

I sympathize. I didn’t engage because my version of an emotional response to that thread was that “PTSD doesn’t fit with the character” felt like a kick in the gut, as if there are certain kinds of people who are immune to the most painful of my personal diagnoses. And that it seems like either a poor choice of words to describe an issue of plot rather than character, or an indication that a sensitivity reader might be in order.

I similarly decided that trying to address that at the length it would be a derail, and wandered off having used up all the time/energy I had at that point for screwing around on MeFi, without actually managing to post anything. I appreciated those who did respond.
posted by Stacey at 5:41 PM on February 4, 2020 [9 favorites]

Stacey, thank you for putting that feeling/sensation into words - "as if there are certain kinds of people who are immune to the most painful of my personal diagnoses." I no longer meet criteria for PTSD, but the layers of the trauma onion always keep falling open, and I did also have a sense of sadness, anger, indignation, that I couldn't put words to when I read that.
posted by fairlynearlyready at 6:00 PM on February 4, 2020 [2 favorites]

Thanks, acidnova and Stacey, for those comments.

I've just done some volunteer proof-reading and angsted backwards and forwards about whether to comment on the use of "schizophrenic" to describe inconsistency or changes in the direction of books. Finally did, but totally get that feeling of " … should I? Am I right? Will I get a response that will make me feel crap?", and am grateful to those who have pushed back here about language. (I got a response which expressed gratitude for my proof-reading and asked me to do some more [in which the word appeared again] - I won't know until the book is published whether that specific word choice was changed.)

Slight derail - but I have some job interviews coming up where I ticked the "I am disabled - give me an interview if I meet the essential criteria", and I really wish I hadn't. I'm going through a circle of "if I get the job I won't actually deserve it; will I look disabled "enough"; will I seem weird for having made a point about it … " Argh.
posted by paduasoy at 2:15 AM on February 5, 2020 [6 favorites]

acidnova and Stacey, just as an external opinion and not any pressure to do more than you did, i think you both explained your internal responses to the question really well and i hope longer comments along those lines wouldn't be considered a derail anymore.

(thanks jocelmeow also and sorry paduasoy for missing your comment in a reply to you! oops!)
posted by gaybobbie at 9:01 AM on February 5, 2020 [1 favorite]

Linking to Disability-related posts appreciation on Metatalk for those, like me, who might have missed it because they mostly read through Recent Activity.
posted by paduasoy at 10:53 AM on February 5, 2020 [2 favorites]

As far as casual ableism goes, there are a lot of people lightly throwing around the term "sociopath" in this thread: Two unstoppable forces, or two immovable positions?
posted by Lexica at 10:54 AM on February 5, 2020 [1 favorite]

All right, folks who want a slack: go nuts.

(Link will expire in 30 days; after that, we'll work out how to handle on-boarding newer folks longer-term.)
posted by sciatrix at 10:56 AM on February 5, 2020 [3 favorites]

[social anxiety intensifies]
posted by mittens at 11:28 AM on February 5, 2020 [5 favorites]

I am interested in posting more about disability issues, but can't take part in the Slack as I don't currently have access to a computer that can cope with Slack. Not a problem for me at the moment but wanted to let people know.
posted by paduasoy at 2:02 AM on February 6, 2020 [2 favorites]

I'm also interested in posting and supporting the posting of more FPPs about disability issues, but won't participate in Slack for a variety of reasons. However, I do have disability-related research collected that I'd be happy to share and I may be able to assist with research, depending on the issue, and I've tried to help edit the Collaborative FPP Drafting MeFi wiki page so it supports collaborative posting, similar to the US Politics FPP Draft wiki page.

What I have learned from working with other MeFites on collaborative posts is that there is always more to learn about what seems obvious about the process to me and what is not actually obvious about the way the technology works - ongoing updates to the pages reflect the ongoing learning process in an attempt to add more helpful information about using the wiki. I am also happy to try to answer questions, though.
posted by katra at 9:00 AM on February 6, 2020 [5 favorites]

Autistic people might be interested in the FPP I just posted about Nicole Cliffe's recent essay. I have added the "disability" tag to ease findability; I am allistic and if I shouldn't have done that, please let me know.

I haven't joined the Slack and I probably will not, for a few reasons. I hope people are finding it useful!

There's a placeholder page on the wiki for collaboratively drafting the next MetaTalk post about disability and brook horse has stepped up to be the person who posts it. Thanks brook horse!
posted by brainwane at 2:53 PM on February 9, 2020 [8 favorites]

Do you reckon we could or should do some backtagging of older posts which haven't used the disability tag? This one on autism, for instance. Would involve either contacting the OP or asking mods to add tags.
posted by paduasoy at 11:14 PM on February 9, 2020 [5 favorites]

Two disability-related questions on front page of Ask at the moment - About "Henrietta Bulkowski" and Finding a font with certain characteristics for reader with blindspot.
posted by paduasoy at 11:20 PM on February 9, 2020 [2 favorites]

mittens: in a comment earlier in this thread you explained, about your anxiety:

I will never be able to be careful enough to make this feeling go away.

You have helped me better understand the friends of mine who have anxiety. Thank you.
posted by brainwane at 5:53 AM on February 10, 2020 [6 favorites]

I'm the OP on the Autistics Speak thread. It was my first and only post. I don't know how to add tags, but I'm happy to do it if someone will point me in the right direction.
posted by ruetheday at 6:58 AM on February 10, 2020 [6 favorites]

If you look at the post in a non-mobile browser, you should see the tags on the right side, with a little box for adding them! (You can add tags to your own posts and those of your mutual contacts.)
posted by restless_nomad (staff) at 7:09 AM on February 10, 2020 [2 favorites]

Done, thanks, restless_nomad.
posted by ruetheday at 7:20 AM on February 10, 2020 [2 favorites]

I'm enthusiastically in favor of adding tags late. I believe contacts of people can also add tags to their FPPs and posts, and here is a blanket encouragement to do that with my posts.

I'm excited by the autism post that brainwane just put up and will be rolling around in it shortly, but on a quick scan, thank you to the folks who have come in already and smacked down the uh, obvious kneejerk reactions to create a better space for discussion.
posted by sciatrix at 8:37 AM on February 10, 2020 [1 favorite]

most of my close friends have MIs

Sorry, what does MI stand for?
posted by hoyland at 4:14 AM on February 12, 2020

Sorry, what does MI stand for?
mental illness in this case i think? but correct me if i'm wrong
good to see you, captain afab!
posted by gaybobbie at 8:17 AM on February 12, 2020 [2 favorites]

It's really hard for me to be interactive right now. Trump is basically a constant PTSD trigger for my childhood abuse and that makes it really hard to contribute in a way I would consider kind and useful. But I don't want to let myself be completely driven from the conversations I would otherwise be in by that. So I'm trying hard to judge when I'm capable of playing nice with others and when not, in the knowledge I'm going to get it wrong a lot and snap at people in ways that I am honestly ashamed of. I'm sorry to anyone I've hurt by that, I'm trying every day to do better. I don't want to let myself be imprisoned by that shame again in the way I did for a good long while. I'm trying to accept that the current stressor mean I'm not going to be able to consistently present myself in the way I would like and that's part of being human.
posted by PMdixon at 11:32 AM on February 12, 2020 [8 favorites]

I had an experience yesterday in a job interview that I wanted to mention. I had declared a disability (and indeed was given a free pass to an interview based on that, which I won't do again as it was hugely stressful). The interviewers had clearly talked before the interview about my disability and decided to modify one of the questions so it didn't sound as if they were referring to it. This came up because the interviewer asking that question got the wording wrong and immediately said "how could I have done that! We talked about this! I'm so sorry!" and the other interviewer said "yes, how could you have done that?! We meant to say [different wording]".

As it happens this was fine with me and I was able to discuss my disability directly in answering the question. But I'm really aware that this is because my attitude to my disability has changed over the years, especially with age, and I'm able to "own" a lot of parts of me, including my disability, that I would have found much more difficult to acknowledge in the past.

So I guess I'm mentioning it because on this site we're all going to be in different places of "acceptance" (not a great word, sorry), recognition, awareness, dealing with … our disabilities. And indeed I could have had a day when I was feeling differently and reacted differently.
posted by paduasoy at 1:19 AM on February 13, 2020 [4 favorites]

^ "acceptance", recognition, awareness, dealing with … our disabilities and other people's reactions to them.
posted by paduasoy at 1:21 AM on February 13, 2020

Hi everybody. Thanks to brainwane for organizing this.

It has dawned on me this year that I probably would have qualified for a diagnosis of autism spectrum disorder as a child, if the criteria and the assessment strategies in the 1980s had matched what they are today. Like lots of MeFites I have taken the odd Simon Baron-Cohen quiz in idle moments before, an impulse borne of a suspicion that I was different in some way, but for Reasons it got a lot realer this week and I'm trying to parse my feelings about that. Do I belong in a thread like this one? "Disabled" has never been part of my identity; I still feel socially awkward sometimes, but I also feel pretty well adapted to the parts of the world I spend time in, and have learned a ton about how to adapt to new settings, how to read people, though I suspect it takes more work for me than it does for some. I don't think most people would read me as having ASD and I am also not sure I'd meet the current criteria as an adult -- the most ASD-characteristic quirks are joys I left behind as I aged. Nevertheless, I smiled in recognition at the comments above about grocery store sensory overload (I really thought that was just me!). I dunno. I may be different but I'm so, so privileged.

Access intimacy is a good topic for me to be thinking about, also for Reasons. I'm reminded of an idea from the Imperial Radch trilogy (which I am loving to pieces on reread) -- AIs having favorites among the humans in their vicinity, and expressing those feelings by subtly easing their way: anticipating their needs before they're stated. Maybe this week's new understanding of myself as part of a group will help me identify ways that my experiences might generalize to more people than I thought, or opportunities for me to provide that sort of ease for others.
posted by eirias at 4:18 AM on February 14, 2020 [7 favorites]

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