We Need to Talk About Ableism September 26, 2023 11:28 AM   Subscribe

The ableism in this thread was so blatant and astounding that we really need to talk about it. The notion that it’s ok because it’s a thread for caretakers to vent is nothing short of disturbing for a disabled person. We would not feel as though other forms of bigotry are ok to vent about in a thread and the people pushing back on it are just not understanding how necessary it is. This is not a matter of more moderation being a solution. This really is a matter for people to wrestle with and come to grips with. You are describing fellow Mefites as “grotesque.” You don’t view it that way, and we’re supposed to be ok with it because it’s your experience. But sometimes you really gotta challenge your experiences and ask yourself why you are treating something hurtful and subjective as an objective truth for yourself and learn how to change yourself. This is the work. This kind of ableism is rampant and that thread is a super distilled version of it.

Ask yourselves truly and deeply why you think it’s ok or desirable to say that if you become disabled you would like to be dead instead, particularly while posting about how once people become disabled they find that they desire the continue living. And that any conversation around assisted suicide can not be divorced from the reality that in Canada it is being pushed on disabled and poor people rather than treatment. People are actively already being killed against their will in Canada with assisted “suicide”, and if you search for those stories you will find them. I’m not linking them because it’s too upsetting for me to engage with any more than I already do.

I’m not asking the mods to delete the thread, nor am I asking for comments to be culled. I’m asking for people to understand that vent threads full of outright bigotry is a cause for reflection for everyone. This is not a matter of changing words, it is a matter of beginning to change your heart. If you resent your parents just resent your damn parents for being shitty, and allow yourself your true feeling instead of cloaking it in ableism. If your parent is grotesque, they can be that without you tying it to their disability. Reckon with your feelings so that you can dismantle your ableism.

Please.
posted by Bottlecap to Etiquette/Policy at 11:28 AM (50 comments total) 14 users marked this as a favorite

Unless I'm missing something, the only use of "grotesque" in that thread was describing a poster's own parent, not a member of the community. I do have Feelings about this but I also believe people directly involved in end-of-life care are entitled to be free from my judgement when describing their experience. mubba's comment closely parallels my take on this: it is not the same as deploying a thoughtlessly ableist slur in a different context.

Also, I'm far from comfortable with the prospect of lumping end-of-life situations involving e.g. terminal cancer and Alzheimer's into a monolithic category of "disability" when discussing the availability (and desirability) of assisted suicide. Like many people in that thread, I have been directly involved in the care of a family member with Alzheimer's, and while there is absolutely some quailty of life to be wrested from the disease its course is singularly inexorable and is terrible both for the person with Alzheimer's and their caregivers. Having had this experience, as I approach the end of my life, I will fight like hell for the option of ending it on my own terms if I need to.
posted by pullayup at 12:02 PM on September 26, 2023 [63 favorites]


Unless I'm missing something, the only use of "grotesque" in that thread was describing a poster's own parent, not a member of the community.

And if a member of this community has Parkinson's, I imagine that feels pretty shitty? I don't see a problem with asking people to examine their abelism regarding this topic.
posted by tiny frying pan at 1:11 PM on September 26, 2023 [17 favorites]


Like, calling a DISEASE "grotesque" would be fine with me. Not a person. Therein lies a big difference with me, that's my data point, not addressing anything else, want others to speak on it.
posted by tiny frying pan at 1:13 PM on September 26, 2023 [9 favorites]


Like, calling a DISEASE "grotesque" would be fine with me. Not a person.

I'll elaborate a bit on my Feelings. I have a relative with advanced Parkinson's. This disease literally warps and distorts the human body. Grotesque is not a word I would have ever, ever chosen myself but when I read this comment I immediately, viscerally understood what the poster was talking about. Like, I have very specific and vivid mental images that I'm pretty sure are close to what the poster saw in their mother's condition. I'm not going to say that the word choice was exactly apt but it was very effective.

Was it ableist? I don't disagree with your position, or Bottlecap's. But, again, I think this specific poster deserves some grace and forebearance considering the circumstances. They were caring for their own parent, and it cost them something, in their own suffering, even if it was not firsthand experience of the disease. It wasn't a flippant comment made about a stranger.
posted by pullayup at 2:12 PM on September 26, 2023 [29 favorites]


I have an immediate family member with Parkinson's. So maybe it hits close to home. I still think it's a perfectly fine thing to ask this community to examine their own abelism and remind them there could be people in the room you are affecting with your words.

There's not really anything to argue about here, imo. Feel sad in advance that this could be one of those contentious threads, when it's a reasonable request.
posted by tiny frying pan at 2:15 PM on September 26, 2023 [8 favorites]


And I am not making it about this specifc poster or word either. Stepping away now.
posted by tiny frying pan at 2:16 PM on September 26, 2023


There is a long history, on and off this site, of ableism being handwaved away because it’s coming from a family member and/or caregiver, because of how hard and painful their family member’s illness or disability is for them. That particular line of thought can do a lot of damage to disabled people, and cause a lot of pain.

I’m not going to say it is never appropriate in any situation, but I would suggest being very sparing and very thoughtful about when and how that particular argument is used. It’s not the slam dunk people sometimes think it is.
posted by Stacey at 2:49 PM on September 26, 2023 [35 favorites]


I don't think it's useful to deploy a term like "ableism" when caretakers are talking through their experiences, their pains and how they cope. There really isn't any sort of hidden -ism there that needs to be explained; the caretaker is more abled than the person they're taking care of, so that's baked into the relationship. But the caretaker isn't a machine. In the stories in that thread, the caretaker is a human being asked to do a difficult task with little support, and it would be absolutely inhuman to expect her to be stolid and unreactive and perfectly behaved, to essentially put on a performance so that other people don't have to see her pain. So that her pain doesn't bother anyone.

No one wants to feel like a burden, no one wants to feel grotesque. That's so valid. But it's not discriminatory to hear that caretaking has a cost. It's honestly the sort of conversation where you have to use your judgment, 'am I in the right place to hear this?', rather than necessarily jumping to the idea that people experiencing that cost should examine themselves before speaking. (Personally I don't think I'd ever want to know what my parents thought when they had to take care of me during my disabled period in my 20s, but I really put them through a lot, and I hope they talked to someone about it!)
posted by mittens at 5:37 PM on September 26, 2023 [72 favorites]


The ableism in the thread is being described as "blatant". Not sure I understand; is it the one time someone called their own parent grotesque?
posted by DanSachs at 5:52 PM on September 26, 2023 [4 favorites]


People who are caretaking for an older relative nearing death are often in an extremely emotionally, financially, and even physically fraught situation, which they handle while dealing with all the other issues of life, including other family members that may need care as well. I would expect that thorough self-examination in terms of the morality of their message board posting would be lowest on their list of priorities--and deservedly so.
posted by kingdead at 6:00 PM on September 26, 2023 [37 favorites]


I am not calling anyone out here: this place was an absolute lifeline for me when I was taking care of a dying parent, which was definitely the hardest and probably the most isolating experience of my life, and I'm sure I said all sorts of regrettable things that I wouldn't have said under other circumstances. And I am in favor of extending grace to people dealing with incredibly trying situations. But I still agree that "grotesque" is a dehumanizing way to describe a person, regardless of whether that person is someone you love. And when people are not dealing with an immediate crisis that is leaving them emotionally and physically depleted, I don't think it's too much to ask people not to use language that adds to the stigma against disabled people.

But I guess that I think that it's really important that people speak honestly about how hard caregiving is. It is really physically and emotionally difficult, and it's incredibly devalued, in ways that reinforce gender, race, and class hierarchies. Unpaid family caregiving is overwhelmingly done by women, and paid caregiving is overwhelmingly done by working-class women, who in the US are usually women of color. Caregivers, whether family-members or paid caregivers, aren't properly supported or compensated for their work. The situation really needs to change, for the benefit of both caregivers and the people to whom they provide care. And it won't change if we can't talk about it. So I guess that I would put in a plea both to speak honestly about our experiences and to try to do it in a way that doesn't reinforce stigma.
posted by ArbitraryAndCapricious at 6:25 PM on September 26, 2023 [28 favorites]


The use of metatalk for this sort of thing seems counter-productive. It was addressed in thread. If it needs more addressing then address it more in thread. One scenario is that metatalk workshops changes to the site "guidelines" but that's been pretty unlikely lately, and it seems the approach here of not really asking for concrete action is common.

What's the point of narrowing the audience? Is this really the sort of thing that needs to come out of the main thread?
posted by Wood at 6:58 PM on September 26, 2023 [19 favorites]


I understand caregivers' need to vent about some things. But is this community the right place to be quite so blunt?

I helped my dad settle his affairs before he died last year. It was wrenching, but the parts that were most difficult for me were not the failing of his body -- they were smaller (interpersonal things) and bigger (societal things, including gender ish, but also the pandemic and our utter failure to contain a disease that I absolutely could not bring into their home). Venting about his physical decline would demean him to no good end. We are all mortal. We will all decay.

What would help, I think, is a broader commitment to the supports that made this awful eight months technically possible for me -- because I had an incredible number of advantages, actually, decent pay, FMLA, and parents who were already living in a retirement community. Even with those things it was still so hard. But without them... I don't know that I would have survived it. And most people in America do not have them. And many caregiving journeys last much, much longer.
posted by eirias at 7:11 PM on September 26, 2023 [6 favorites]


There are many members here who are end of life and being cared for by relatives or strangers.
posted by Bottlecap at 10:16 PM on September 26, 2023 [12 favorites]


It is, I think, important to moderate threads as if they will be read by anyone. I don’t know if I agree with labels like “blatant ableism” and “bigotry”, but when people deploy those phrases they are having a strong reaction to the text and, in my very limited reading of the thread, that seems understandable. My pablum response is that it’s good to moderate threads to avoid setting off those alarms in members of the user base. (I have probably contradicted myself on this.) But for better or ill, you’re writing for a lot of different protected classes at once on here.
posted by Going To Maine at 9:34 AM on September 27, 2023 [4 favorites]


Bottlecap has buttoned. This is a sad turn of events.
posted by y2karl at 6:46 PM on September 27, 2023 [9 favorites]


I clicked on Bottlecap's account link. As noted, they have buttoned. What struck me for the first time is the verbiage on the account. "This account is disabled." I certainly appreciate there are several meanings for the word "disabled", but could we change the verbiage to something else like, say, "inactive"? This account is inactive or This account has been closed.
posted by JohnnyGunn at 1:47 AM on September 28, 2023 [23 favorites]


It bothers me that this thread has ended up centering caregivers. Caregiver experiences matter, but we seem to have done a good job of vanishing disabled people from the discussion. Which is, of course, itself ableism.
posted by hoyland at 4:08 AM on September 28, 2023 [13 favorites]


The thread has centered caregivers because bottlecap's complaint is about the speech of caregivers. The "you" of bottlecap's comment is the subject of the thread.

The greater problem of the thread--and I touched on this in my original comment--is a language problem. By phrasing things in terms of -isms, of asking people to examine privilege, to speak of vanishing--none of this is talking about real things, real feelings, real experiences. There's nothing more real and concrete and physical than having a disability. There's nothing that more sharply brings itself to your attention, over and over every day, that marks you off from everyday society. This more rarefied language simply doesn't help, because it gets us away from bodies and minds, into the realm of internet-politics-talking.

Now I'm not sure if the thread would've gone as bottlecap wanted it, if it was phrased more like: Being disabled fucking sucks, and hearing your sob stories about having to take care of your relatives with your poor sad fully-functioning bodies that will still be dancing and running around after your relative is dead, does nothing but infuriate and depress those of us who have to be taken care of, or have to look forward to that grim state of dependence.

But it would've been more honest to the conflict in the situation. (Honest but not complete, because it turns out being disabled isn't actually a state of moment-by-moment horror for every disabled person, and as people have mentioned, end-of-life eldercare works kinda differently from other disability experiences.)

Instead, everything just sort of collapses into this weird binary where you're an asshole if you feel bad for taking care of someone. That judgment in itself is kind of inhuman--we should want everyone to take care of everyone else, and we should expect that labor to have an impact, the same way all emotionally-draining work does, and we should leave a little room for that emotional exhaustion rather than punish it, and we should leave some room for that exhaustion to be a let-down if you have to hear about it as a disabled person. Otherwise we're just being dishonest, and what we're vanishing isn't a class of people, but our sense of care.
posted by mittens at 5:33 AM on September 28, 2023 [53 favorites]


I didn't circle back after commenting, so I did not realize until I read comments that I had used such a harsh word. It describes my feelings rather than my mother's appearance, but I unfortunately can't go back and correct it now.

I do apologize. I continually exhort myself to re-read what I've written but I don't think I have ever posted anything that I didn't have to edit at least once.
posted by Peach at 6:04 AM on September 28, 2023 [16 favorites]


I agree with mittens — the question put to us was about caregiver speech. What does community care require of us? In my own comment I was trying to articulate a view of where the line ought to be, because like ArbitraryAndCapricious I don’t think it’s helpful in the long run for this to be taboo, but I deeply regret it if my words contributed to Bottlecap leaving. I valued their contributions tremendously and I hope they return.

I think part of why my caregiving experience was so difficult is that we in the US (I won’t speak for others) have an extreme aversion in society to disability and death, and so what should not be a surprise, is a surprise too often. And we also have a narrative that in middle adulthood our lives are our own and we can choose things like where to live and whom to love — and surprise eldercare wrecks all of that every bit as much as an unplanned pregnancy does. Caring for my dad required me to separate myself from every single thing that makes me me, my work, my spouse and child, my home, because my parents chose to retire hundreds of miles away from me and I am their only child. I suspect people make choices like this because nobody much likes to think about the dependence that comes for just about everyone. If we talked about it more instead of hiding disability away in tidy little buildings, if we openly acknowledged the inevitability of life’s end, the sacrifices required to give people the care they need in those months and years might indeed be less — and if not, at least they would not come as such a rude shock to the people who must step up. Most things become more bearable when you can plan.
posted by eirias at 6:07 AM on September 28, 2023 [15 favorites]


Could we change the verbiage to something else like, say, "inactive"? This account is inactive or This account has been closed.

We should absolutely do that. Thank you for bringing that up.
posted by jessamyn (staff) at 8:21 AM on September 28, 2023 [30 favorites]


I'm a caregiver to a couple of elderly and incontinent people now, but I'm very aware that I will eventually get old too. And this dehumanizing langugage about old and disabled people bothers me a lot.

Especially all that stuff in the thread about how various people would rather kill themselves (or go out into the woods and die of starvation once they can't care for themselves) than end up in such a state. Some people are ALREADY in that state. Imagine reading that thread if you were old and disabled and needed help with toileting. It would sure feel to me like a bunch of people saying "kill yourself."

Caregiving is hard. It is brutally hard. Being severely disabled and old is harder.

And it seems to me like I can express the frustations (and fears!) that come with caregiving without punching down at people who may be even more stressed and frustrated and afraid. I can say "Seeing what happened to my mother in law's body made me feel afraid and sad" without saying "she was grotesque." I can say "thinking about my own future dependence on others scares me even more than thinking about my own mortality" without saying "I would kill myself if I ever needed to depend on someone to change my diaper."

I feel genuine respect for the people I'm helping to care for, so I don't think there's any conflict between being honest and being respectful. I can do both. And it doesn't seem like that much to ask of other caregivers, to me.
posted by OnceUponATime at 8:49 AM on September 28, 2023 [21 favorites]


I keep on thinking of the advice about how to cope with stress when you're the caregiver, and that is to "dump out instead of in". When you're taking care of someone, you don't go to the person you're caring for with the very real frustrations and stresses you're experiencing - instead, you go to people outside the situation to be your support system.

It strikes me that often part of expressing these frustrations may include saying things you don't mean - and that can include using ugly language to describe the person you're caring for. Which is 100% one of the reasons why you don't dump this in the lap of the person you're caring for; you have this incredibly ugly thought in your head and it's driving you crazy, but dumping it in the lap of the person you're caring for would be TERRIFICALLY unfair, so you save that for the conversation you have with your best friend because they know you don't REALLY mean it that you think your MeeMaw looks like an overstuffed baked potato or whatever it is you're thinking. You just need to get that thought out of your head, and once it's out of your head you can take a deep breath and think more calmly again and you may even say "wtf is wrong with me, why did I say that about MeeMaw" and your friend can say "you're stressed to the gills and you didn't mean it, I understand".

It's possible for a caregiver to think with compassion towards those they care for, but I doubt that it is possible for a caregiver to think this way 100% of the time. And so occasionally they do indeed need to "dump out".

So the problem I'm seeing - and I'm not sure what the solution might be - is that Metafilter has become a site people turn to as the "dump out spot". And - just like some of us are taking their comments as the "they're venting because they have no one else to vent to" situation it likely is, others of us are living with the very problems these loved ones have and it's sort of a dumping-in-by-proxy situation.

Also - not every friend is able to offer this kind of care-for-the-caregivers support. Some people just don't wanna hear about it for a variety of reasons. And so some of us in Metafilter may be getting this kind of dumping-out response and are not sure what to do.

Again - I have no solution for this scenario. I offer this perspective simply to suggest that maybe this isn't ableism, and to suggest that caregivers are probably not going to be perfectly compassionate with their speech 100% of the time, especially when expressing frustration with what's going on (because they're frustrated, which means they're emotional, which means their self-censor is probably on the fritz). But at the same time, it's also asking a lot of people who are suffering from physical or mental or emotional challenges themselves to hear that and just let it slide (because they got their own whole bag of stuff going on).

With apologies to the mods (because this may sound like "oh shit, ANOTHER thing we need to do?") maybe there's a call for some kind of SupportFilter, with threads offering support for different scenarios? Like, "I'm a caregiver for elderly parents" and "I'm job hunting" and "I have [insert condition here]", and so if you do need to find a community of fellow caregivers you can go get the support you need, and if you're someone who's struggling with needing care you can go there instead, and that way people who are facing the very real problem of living with a physical challenge don't run into the people who are also facing the also very real problem of being the person struggling to care for someone with a physical challenge.
posted by EmpressCallipygos at 9:41 AM on September 28, 2023 [31 favorites]


This all is a lot easier to understand when people remember that there is allowed to be more than one problem happening at a time; and caring about problem A doesn't mean you can't care about problem B
posted by Jarcat at 10:38 AM on September 28, 2023 [3 favorites]


I continually exhort myself to re-read what I've written but I don't think I have ever posted anything that I didn't have to edit at least once.

You and me both, sister, you and me both.

But only of late and imperfectly at that, I must add.

In this case, I had slowly been composing a comment a tad less diplomatic than Going to Maine's but thought to click on bottlecap's profile first before hitting post -- a step I heartily recommend to everyone -- before I posted it and am so glad I did. No need for it now.

Someone makes a comment on the spur of the moment and someone else more or less flys off the handle in instant response. In an ideal world, thoughtfulness should trump thoughtlessness but good luck with that. We are all too often all too human here. But that comes with the territory, I think. Which is why I recommend always clicking on the profile. It helps you see the other person. At least, sometimes.
posted by y2karl at 11:26 AM on September 28, 2023 [9 favorites]


Which is why I recommend always clicking on the profile. It helps you see the other person.

this is excellent advice
posted by kensington314 at 11:48 AM on September 28, 2023


So the problem I'm seeing - and I'm not sure what the solution might be - is that Metafilter has become a site people turn to as the "dump out spot". And - just like some of us are taking their comments as the "they're venting because they have no one else to vent to" situation it likely is, others of us are living with the very problems these loved ones have and it's sort of a dumping-in-by-proxy situation.

I think this hits the nail on the head. It's certainly accurate to the problems that I have had with caregivers on the other end of life generally: there is a real frustration and exhaustion that come along with the fact that the resources available for caregiving are wildly inadequate, leaving people to struggle alone well beyond their meaningful capacity. Add that to the reality that these are strongly gendered tasks, with women receiving more blame for imperfect or undone labor than men, and you hit a landmine. And yet.

I have handled a similar kind of venting in community spaces, many years ago when I was more active in the asexual community and it was less well known then it is now. Then, I often saw people who had been really pressured to engage in sex they did not want to have hit the asexual community full of bad feelings about sex bubbling to the top of their minds and mouths. As they settled into a new framework that didn't pressure them to engage in activities they didn't want, often this frustrated negativity would melt away and they could engage respectfully with other people without returning to that emotional state of feeling personally pressured again. I imagine there is something very similar for people who are actively immersed in caregiving and full of grief and frustration and exhaustion.

The thing is, handling that kind of venting is delicate even when it is restricted to appropriate, signposted spaces dedicated to helping release the negative feelings without amplifying them or hitting other people--say, other queer people whose sexuality has been repeatedly attacked for simply existing--in the crossfire. Is Metafilter the place for that? (Is it the place for venting the frustration that bubbles up when caregivers are centered again in a thread about disability? What are the unnamed assumptions of the space?) When that kind of venting leaks out in mixed spaces, it usually creates a lot of conflict and inflammation as people are burned by the metaphorical steam. I would like to see fewer people get burned here.

I am a firm believer in the utility of dividing space and time in order to allow people to self-curate the conversations they want to participate in and handle conflicting accommodation needs. I find that defining and labeling the 'center' of a conversation allows people to decenter themselves and center themselves more effectively as needed: we all need to have our experiences centered, examined, and validated sometimes, and the usual tendency to elide a 'dominant' group into an unmarked 'default' tends to create problems

In this case, I read the balance of the framing of the FPP as actively constructing a space for caregivers, but I also see a lot of ambiguity there and note that it is not clear what the guiderails on the space are. I don't think that there can be any pronouncement on what Metafilter as a whole site is for and not for in terms of this kind of emotional vulnerability--what I'm referring to as "centering" a group in attention and empathy--but I do think we could do a better job of centering individual discussion threads around particular types of viewpoints and experiences with an eye towards letting everyone have and create spaces to engage with.

Of course, it's hard to pre-emptively label things like that without setting off other issues. It's unclear to me how to solve this one, either.
posted by sciatrix at 12:05 PM on September 28, 2023 [15 favorites]


This all is a lot easier to understand when people remember that there is allowed to be more than one problem happening at a time; and caring about problem A doesn't mean you can't care about problem B

There are also a not insignificant number of caretakers who are more or less forced into having to manage care for a parent or relative who has . . . not been the greatest parent or relative. It is an extremely fraught and emotionally volatile situation that can make you* seem like a monster if you are anything less than absolutely dedicated. And just because age or illness has made a person more fragile, that doesn't mean that they are going to be any less of a narcissist/ asshole/trauma source/bigot even (ESPECIALLY) to the person caring for them. I'm not saying that gives anyone the right to use abelist slurs or make broad generalizations about the elderly or people with illnesses or
disabilities, but the anger and the hurt and the ambivalence. All those things are no joke.

*Especially if, say, "you" is a single woman without children. Without going into any details, I might have some experience here.
posted by thivaia at 12:48 PM on September 28, 2023 [20 favorites]


Is it the place for venting the frustration that bubbles up when caregivers are centered again in a thread about disability?

That article was about caregivers and so was the thread that followed.
posted by We put our faith in Blast Hardcheese at 2:30 PM on September 28, 2023 [11 favorites]


There are also a good many caregivers who are, ourselves, disabled. Sometimes we just have to accept that if we seek safe spaces to vent about our caregiving issues, we are also opening ourselves up to hearing pretty fucking terrible things about people just like us in the process. None of these categories are clean, none of this is easy, for sure.

Centering caregivers or even limiting something to only caregivers does not mean people with disabilities won’t still be right there in the conversation.
posted by Stacey at 2:32 PM on September 28, 2023 [24 favorites]


That article was about caregivers and so was the thread that followed.

My feelings also. I think the complaint would be relevant if we went into any thread about disability and dumped that being a caregiver is oh so hard. Let people have their space. Also people can move in and out of disability, for injuries, or other health reasons most of us will get old, so I'm not sure I agree that 'ableism' applies here. Most of us are just 'currently not disabled'. We can talk about our past and future selves, positively or negatively.

It also kind of gets into 'not all men' territory. Just because someone is disabled doesn't mean a mean comment on the internet is about them. If that's the way it's going to go, then just hurry up and rid of comments.
posted by The_Vegetables at 2:49 PM on September 28, 2023 [4 favorites]


Honestly if we're in a place where the most "honest" presumption is that caregivers are blithe assholes, always in perfect health that is never ruined by the stress of caregiving, who don't give a fuck when their loved one dies, I don't think these conversations can actually ever happen at all.
posted by We put our faith in Blast Hardcheese at 3:35 PM on September 28, 2023 [21 favorites]


It also kind of gets into 'not all men' territory. Just because someone is disabled doesn't mean a mean comment on the internet is about them.

Men and disabled people do not occupy even passingly similar status in society. One is frequently subjected to abuse, discrimination, social isolation, and the other is in a position of privilege.

I don't know, this is a unique situation with a conflicting needs of different groups of people who are regularly shit on differently by society. And you know, people are going out of their way here to be empathetic to caretakers and show that they understand they're hurting and stressed and suffering, but somehow that care doesn't get extended the other way? You know, it's a bit much to ask of a group of people who are usually treated really badly by society not to take it personally when people are talking about how members of that group really are "Grotesque."

I mean, look, I've been sitting on my hands this whole time because I'm mostly just kind of a ball of pain when people talk about how they'd rather be dead than have a condition, and like that's in large part a me problem. I have things in me that I want to say in response, things that are an expression of pain meant to cause pain. Cause you know maybe if other people feel pain I won't be alone. But, I don't say that, because the last thing the world needs is people who are hurting hurting each other.

But this idea that disabled people are what? Reading comments looking to get upset? That's not o.k., it's not o.k. to say about any marginalized group. If we're sensitive, it's because we've been sensitized by a societal system meant to constantly remind us that it sees us as less than. Just like people who are forced into the role of caretakers are. That door swings both ways.
posted by Gygesringtone at 5:15 PM on September 28, 2023 [9 favorites]


A general rule I try to follow is to center the experiences of people most marginalized by society and societal structures. It's the general "punching up, not down" idea, though hopefully with less punching. Just an acknowledgement that a lot of people are struggling with a lot of stuff, but we should not be harming even-less-privileged folks when we talk about any given struggle. It helps me clarify where the most harm is occurring or likely to occur, and work to right that.

Obviously if this were a caregiving support group, that wouldn't necessarily apply (though arguably it might still). But this is not a caregiving support group; it's a general-interest website and we're speaking in public to a wide range of people. So having some power analysis about how harm occurs based on societal biases and imbalances is important.
posted by lapis at 6:00 PM on September 28, 2023 [1 favorite]


But this is not a caregiving support group; it's a general-interest website and we're speaking in public to a wide range of people. So having some power analysis about how harm occurs based on societal biases and imbalances is important.

This is why I suggested the "SupportFilter" option - because you're right that this is a general-interest web site, but people were using that thread as a caregiving support group, and my presumption is that in part that was happening because such support groups are sadly fucking few and far between because we are in a capitalist hellscape, and many people likely had few other options. I mean, hell, the very post was about an article discussing the lack of "humorous takes" on the scenario, and speculating that it was because of such a lack of support for caregivers.

I proposed SupportFilter because a) there was clearly a need, and b) it would also be easier for those not seeking to get involved to not get involved.
posted by EmpressCallipygos at 6:51 PM on September 28, 2023 [3 favorites]


It's true: I said both "Is it the place for venting the frustration that bubbles up when caregivers are centered again in a thread about disability?" and "In this case, I read the balance of the framing of the FPP as actively constructing a space for caregivers," but it's funny how one of these apparently sparks--what? Correction? Emphasis? I'm genuinely not sure.

The basic problem with trying to determine who is more marginalized in a situation is that everyone in this situation is generally struggling with marginalization. Caregiving is isolating, exhausting, and extremely feminized work. On the other hand disability is also isolating and exhausting. You have these two broad groups of people who are both searching for connection and validation in a world where any kind of attention and support feels rare and precious and therefore is a treasure to be closely guarded.

And, as Stacey aptly points out, you have people who inhabit both categories: both caregiver and disabled, supplying care while simultaneously needing (and often not receiving) care and support on one's own behalf. My personal rule of thumb is that I find the best light to be shed onto conflicts between groups of people comes from people with a foot in both worlds. Ideally, how would we navigate a conversation or space from the perspective of making space for people inhabiting the intersectional experience of a disabled caretaker?
posted by sciatrix at 9:12 PM on September 28, 2023 [5 favorites]


Ideally, how would we navigate a conversation or space from the perspective of making space for people inhabiting the intersectional experience of a disabled caretaker?

I don't know that caregivers as a discrete category are oppressed societally in quite the same way that disabled people are (I mean in the sense that if you take away categories like "women" and "low income," there's not the same sheer quantities of societal structures that label "caregivers" as a disparaged class of people), but regardless, I think what you're saying is probably what I meant to say. Looking at things intersectionally illuminates that these groups shouldn't be used against each other.
posted by lapis at 9:19 PM on September 28, 2023 [1 favorite]


I am so sad Bottlecap has buttoned. And glad that Peach apologized.

I am a person with disabilities and getting worse as I age. I have also been a responsible party for my mother as she declined with Alzheimer's and eventually died. She was in assisted living because 1. we had the money, fortunately and 2. I physically could not have given her the care she needed. We also had a complex relationship; things my parents did would now be classed as child abuse. I am an only child so I was the one making decisions and the responsible party all the way to the end. I know some of my mother's friends judged me for things I did and didn't do; I judged myself for some of them. With a few years of distance I know I did the best I could under difficult circumstances.

I have a lot of feelings about how that conversation went and they're complicated, and I am trying to extend grace all the way around. This really is a topic where everyone needs a hug.
posted by gentlyepigrams at 9:38 PM on September 28, 2023 [21 favorites]


Could we change the verbiage to something else like, say, "inactive"? This account is inactive or This account has been closed.

Frimble has started this, the verbiage now reads "This account is closed". There are few spots where the verbiage might still appear, so if you see any examples of where it still says "disabled" please let us know. We're aware of it still being on the "Linked to" and "Linked by" pages and in a MeFi Mail notice. Those will be adjusted shortly.
posted by Brandon Blatcher (staff) at 6:14 AM on September 29, 2023 [30 favorites]


Something I am mulling over: When our needs have costs for other people, how much should we expect those people to work to hide those costs from us? Obviously in the dyadic caregiver-patient relationship it's churlish to bring them to the forefront, but I get the sense from some comments here that there's an expectation that the costs be hidden from all people who might find themselves in a similar situation. And I don't think I agree.

Trying to think of other contexts in which this might apply. Surely we have both adult children of alcoholics here, and also those who have struggled with substance abuse. Is it reasonable to expect the former to stay quiet about how the substance abuse affected them because they're the less marginalized party and the more marginalized party is in the room? We also have both parents of kids with serious disabilities, and teachers who teach children with serious disabilities. Should the latter stay quiet about the challenges they've experienced in the classroom because they're in mixed company?

I don't think polite silence that benefits just one party is productive. I actually think that in situations where needs conflict, it may be helpful to people in both roles to see and understand the struggle at something of a remove, as a third party observer instead of a participant. I don't say that it's easy or that it isn't hurtful and I do think that everyone needs to try not to be an asshole about it. I don't see any assholes in this MeTa thread, though.
posted by eirias at 6:38 AM on September 29, 2023 [8 favorites]


I am sad that Bottlecap has buttoned.
posted by praemunire at 7:34 AM on September 29, 2023 [11 favorites]


I am sad Bottlecap buttoned, too.
posted by AnyUsernameWillDo at 8:21 AM on September 29, 2023 [8 favorites]


Men and disabled people do not occupy even passingly similar status in society. One is frequently subjected to abuse, discrimination, social isolation, and the other is in a position of privilege.

This is really stupid. People can belong to more than one demographic ffs
posted by Jarcat at 9:17 AM on September 29, 2023 [6 favorites]


When our needs have costs for other people, how much should we expect those people to work to hide those costs from us? Obviously in the dyadic caregiver-patient relationship it's churlish to bring them to the forefront, but I get the sense from some comments here that there's an expectation that the costs be hidden from all people who might find themselves in a similar situation.

That's not what I'm saying, at least. But generally in groups that get pitted against each other, one group is societally oppressed and the other is struggling because of the other's group oppression. Special ed teachers struggle much more than they should because society in general does not put enough resources toward ensuring disabled people have equal access to things like education. (I think people struggling with substance use and people who were harmed by people who used substances can both agree that substance use can be a problem, so I'm not sure why that would comparable.)

I'm not saying to hide things. I'm saying to pay attention to where the actual problem is. Lack of resources and societal support around caring for each other, not disabled people, in this instance.
posted by lapis at 10:09 AM on September 29, 2023 [4 favorites]


To circle back to that metaphor about helping people vent their real and valid emotions so they can release themselves from internal pressure to be and feel a particular way without burning other people by proxy: how can we facilitate that without simply telling people to be silent?

For example, in the example about people who are temporarily REALLY into "sex is awful and so is anyone who pushes it and I am engaging in that a LOT right now," what I have found to be effective is validating a person's personal feelings about activities and experiences that were bad for them, and affirming their right to set boundaries for themselves and say "no" to things they feel pressured to engage in. At the same time, you redirect the more general (and more toxic) impulses to paint broad brushes about how to engage with complex and painful topics or make prescriptive comments about how other people should engage with them until the big burst of grief and frustration and pain has had some time to dissipate.

You humanize the people who can wind up representing bad feelings and emotions, and ideally you can say things like "oh, hey, Francakes over there experiences these things just by being a different kind of person. You know Francakes and you like her, and she's never pushed you to do or be anything in particular. Your feelings are valid, but your actions have consequences, so make sure you remember the people who aren't doing you any harm when you express your pain outside of this space. After all, that's the price of asking people outside your constituency to stand up for you when they are expressing their pain." (I'm thinking of a specific user, not herself asexual but who had had a partner who was, who often hung out in these spaces and chose to affirm people's choices to do whatever made them most comfortable and happy.)

It is hard to do that in such a way that people casually wandering by can't get hit in a sore spot. That's why ideally you do that kind of cathartic processing somewhere where the function of the space mentions this might be happening, so that people don't walk in and go "wait what--ow--what--fuck OW FUCK YOU FUCK" and, in their own startled pain response, create more conflict. You let the ugly feelings sit, you feel them and you practice thinking about ways to express them without hurting people who might be your allies.

I think this is a better way to express the conflicts inherent in these topics than trying to determine who is most marginalized. Fortunately, we have infinite space here in this virtual space, if not infinite attention.

That's not what I'm saying, at least. But generally in groups that get pitted against each other, one group is societally oppressed and the other is struggling because of the other's group oppression.

I'm right here with you, lapis, about the general thrust of what I see you trying to communicate, and I agree that we are on the same page generally. I'm just going to tweak this, literally the only point I think we are in minor disagreement on:

In my experience, groups that get pitted against each other in lateral conflict are both struggling because of the same group oppression that harms each group in different ways. So as you say, caregivers wind up struggling because society does not allocate enough resources to caring for disabled people, who are disproportionately older people in our society. Disabled people, who need care and often don't receive it, wind up struggling for the same reason. But the conflict winds up being perpetuated because two hungry groups are struggling for resources that each perceives as scarce and limited, instead of figuring out how to create solidarity between one another and learning to listen.

So: what circumstances help us figure out how to develop spaces where we can practice listening to one another effectively?
posted by sciatrix at 10:40 AM on September 29, 2023 [6 favorites]


I am also sad bottlecap buttoned.

I appreciate the call out and discussion of this post. Ultimately I think this is an incredibly challenging conversation. We are all learning and growing. I learned from this post.
posted by samthemander at 10:48 AM on September 29, 2023 [6 favorites]


Men and disabled people do not occupy even passingly similar status in society. One is frequently subjected to abuse, discrimination, social isolation, and the other is in a position of privilege.

This is really stupid. People can belong to more than one demographic ffs


I never said they couldn't? I'm a man with a chronic illness. I know that I belong to both demographics. I'm also pretty familiar with how being a dude puts me in a privileged positions and how my chronic illness puts me in positions where I have no privilege. Heck I'm even familiar with how the two interact so that the systemic problems I face because of my illness are lessened because of the privilege of being a dude, and how my dude privileges are lessened because of my condition.

The thing is, I wasn't responding to a comment about gender as it relates to disability. I was responding to a comment that was implying that people with disabilities being upset by seeing language that's used to dehumanize us being applied to other people was similar to men protesting that we shouldn't all be lumped together when talking about the privileges we all benefit from. I'm confident standing by the idea that two different situations are different.

So, no, it's not stupid to point out that, even if they overlap, "men" and "people with disabilities" are two different circles in a Venn diagram. No, it's not stupid to point out that being included in one gives you advantages and the being included in the other gets you discriminated against. No, it's not stupid to suggest that because of those differences reactions that may appear similar at a distance are actually not direct analogs once you factor in which of those circles the reactions are coming from.
posted by Gygesringtone at 12:12 PM on September 29, 2023 [13 favorites]


It's the nature of the public internet that anybody can wander into the D&D game or the serious political discussion or the consciousness-raising session or the venting circle or whatever and sometimes a particular space or conversation is Not About You even though you're reading it and having feelings.

Metafilter is both a website/space and a community. By the nature of participation here, we all have different degrees of (para)social relationships with each other, and our communities in this space rely more on some folks than others. It's like a series of interconnected webs and we're each more anchored to some users and topics than others, creating a complex community as a whole.

I like it here, but one thing I have learned is that sometimes discussions here go off in directions or to related topics that I wish they wouldn't. (I want to talk about A from this post; other people are talking about B from this post; I can't turn the conversation back to A!) Sometimes that overlaps with different kinds of discussion going on in the singular space of a post discussion in a really bad way. Combine that with the different communal webs we each have among the membership of this site and people can get really hurt by the wrong topic addressed in the wrong way FOR THEM even if everybody else is having a good time/an intense and meaningful discussion/etc. Nobody's wrong necessarily but people are still getting hurt.

I feel like that's all part of what happened in that thread (and not just in that thread) and I just wanted to put it out for people to think about in their approach to Metafilter and particularly to Metatalk conversations.
posted by gentlyepigrams at 2:21 PM on September 29, 2023 [4 favorites]


Nobody's wrong necessarily

I agree that this comment describes a thing that does frequently happen, but I think in this particular case, it was wrong to talk about people in a dehumanizing way, even if people didn't realize that some of those who might feel dehumanized were listening.

Peach has already apologized. Probably the "I'd kill myself if I had that condition" people aren't going to, but it would be great if the rest of us could just come to a consensus that this is a bad thing to say. Even behind the backs of the people who have those conditions.
posted by OnceUponATime at 8:30 AM on October 3, 2023 [11 favorites]


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