How hurtful do we go?

May 4, 2012 5:17 AM

This is largely a self policing community- but what are community thoughts on sharing every thought we have when someone who hasn't harmed anyone creeps us out?

Using metafilter as usual in this way to point out how revolting you think innocent people going through something terrible are is harmful- and might be the kind of time to rethink using metafilter as usual if it's going to hurt people.

Would it be ok to say that gay sex creeps you out and what kind of person writes a blog about their creepy gay sex asking for likes (creepy, attention seeking over something that should be private!) in order to raise money to prevent LGBT suicide?

Would it be ok to say that people with eating disorders are doing something so creepy and a blog where someone writes about their eating disorder and asks for likes to raise money to provide resources for people with eating disorders is so creepy, and what sort of person would do that?

What about severe burns? Is it empathetic to profess how creepy you think someone with burn injuries is for posting pictures of themselves on the internet and raising awareness and what sort of creepy person would make that public when they should keep themselves in secret and they should know the world will want to tell them how creepy they are?

These people did NOT sign up to be insulted by the whole world. If you're going to say "Well anyone who writes anything on the internet should be prepared for anything anyone else wants to say about it" cool.

Be prepared to hear what I have to say about that and how harmful and NOT empathetic your behavior is. Also really "They should have known what was coming" is rather creepy logic to justify saying hurtful things about people who probably had no idea how vicious the world is.

To find out many members of the community of metafilter feel like pointing out how revolting people are any time we have an emotional reaction no matter who that harms constitutes empathetic behavior is disturbing to me.

If the people who wrote that blog read this thread and are harmed by how callously people wrote their "reactions" to the blog, I am genuinely embarrassed to be part of a community that zealously defends such hurtful behavior.

I recognize I must have set my ethic meter too high at metafilter, and I may have misjudged the general community here, but is this really necessary to profess how creepy people are and defend that as being empathetic? I like that metafilter has a low level of moderation and the general community is self policing, so-- how should we handle this in the future? Is saying really harmful things to people who I really don't think are "asking for it" or deserve it during a really difficult period in their lives just for putting themselves out there to raise money really an important part of metafilter speak? I just really want to know if the general community here thinks this kind of behavior is empathetic normal behavior because if so, I need to adjust the level of respect I had begun to develop for the metafilter community as a whole.

I feel like if this is what we want to use metafilter for and don't care who it harms, I'm having a hard time understanding how we could call ourselves an empathetic community (but maybe collectively we aren't and that's what I need to adjust in my thinking).

posted by xarnop to Etiquette/Policy at 5:17 AM (160 comments total)

Can you provide some example links, please? I haven't really seen what you're describing, (or perhaps only in rare, isolated instances) so examples would be helpful.
posted by zarq at 5:19 AM on May 4, 2012

Oh sorry, it's this thread.
posted by xarnop at 5:21 AM on May 4, 2012

I just shrug and say it's probably better that they're saying it here instead of going to the site in question and telling the people directly. That way, they still show their true colors and the people with these confessional sites are spared. Everyone wins!
posted by EmpressCallipygos at 5:38 AM on May 4, 2012 [4 favorites]

The problem with making analogies is that people will just argue that your analogies aren't the same.
posted by smackfu at 5:45 AM on May 4, 2012 [2 favorites]

What EmpressCallipygos said.
I haven't read the original thread in any detail, but I've been scanning it for the past few minutes, and I am in the "Well anyone who writes anything on the internet should be prepared for anything anyone else wants to say about it" camp.

No, they don;t need to read it from trolls or griefers on their own blog, but here is not there, and while there are rules 'bout stuff and "don't be dicks to others", I figure most reactions to stuff here are coming from valid places, and we should feel free to discuss them.

That is the only way I have come to accept stuff that I have found creepy or disturbing or confusing in my life thus far.
posted by Mezentian at 5:45 AM on May 4, 2012 [1 favorite]

I read a bunch of that thread over the last couple of days and I think you are really misreading what it is a lot of people are saying wrt to their reactions to the blog.

In answer to you question, and in very broad strokes since I think you're operating from a very different basis, yeah, I think it's fine for people to say they are disturbed by something. I mean, here you are saying you're disturbed by something, and many of the commenters you're referencing may find that hurtful.
posted by rtha at 5:54 AM on May 4, 2012 [18 favorites]

I am in the "Well anyone who writes anything on the internet should be prepared for anything anyone else wants to say about it" camp.

I'm not, in so far as that yes, douches gotta douches and there will always be somebody who wants you to hget raped for daring to write that Star Wars is better/worse than Star Trek, but this should not be used as an excuse for this behaviour -- "bitch had it coming posting on the internet" and all that. MeFi should be better than that.
posted by MartinWisse at 5:56 AM on May 4, 2012 [2 favorites]

People are discussing their reactions and thoughts about the topic. This is not a homogenius society.

Just as someone may be creeped out by people posting in the voice of their dying child, you are creeped out by people saying they are creeped out.

Personally, I think calling someone out and saying they should be ashamed for voicing their opinion for their opinion makes you feel bad misses the point of what the discussion should be about.

People are using the example as a proxy for discussing a behavior. I don't see anything wrong with that. I think we've become such a politically correct-afraid to hurt anyone's feeling society that we tend to retreat from difficult discussions and hide behind being empathetic.

Do people go a bit far and emotional? Sure - because fingers type faster than brains work. Factor that in when reading.
posted by rich at 5:59 AM on May 4, 2012 [4 favorites]

If I understand your question (it's a bit verbose), what you're describing is not endemic to MetaFilter. It's a consideration everywhere people have discussions—across the Internet, in newspaper columns, in coffee shops. "What are the ethics of saying that [xxxxx] creeps you out, when [xxxxx-person] might be standing right behind you and could overhear?"

Is that your question? If so, then I think it's simple. Don't be hurtful. "Do unto others..." Any rule more complicated than that will be troublesome, and will get tripped over. Our society generally believes that more good than bad will result from having a free marketplace of ideas, a world where people can discuss being creeped-out by [xxxxx] and have their friends either reinforce that or disagree with it.

One of the "bad" effects is that sometimes people will be offended, or otherwise hurt emotionally, by discussion of those ideas. That part sucks. But collectively, I think we (society) have agreed that it's better than the alternative.

Separately, part of your question seems to be about having discussions about [xxxxx] directly with [xxxxx-people]. I think many people will change the way they discuss a delicate topic if they know that somebody in the conversation has a personal connection with it. Call that ethics, courtesy, manners, whatever. If you're asking whether that's appropriate, I think it is. I also think it's difficult to enforce if somebody chooses not to observe it. On MetaFilter, I think your only option is to just ignore that person.
posted by cribcage at 6:01 AM on May 4, 2012

I feel what rtha feels. I think you had a very different reading from many of the other people in that thread of those specific comments. Now this may be because my emotional responses to some of the stuff on that blog were probably more like tzikeh's than other people's may have been. So I stayed out of the thread. I found it personally distasteful.

I'm having a hard time understanding how we could call ourselves an empathetic community

We are not an empathetic community by design. We have empathetic members and we have snarky members and a lot of people in some other emotional place. Posting something where the only acceptable response is "Oh gosh, that is truly horrible" is a bad set up for a good post on MetaFilter. We ask people to be decent and not piss on people's graves and go on aggressive rants against people here or people in the larger world. Saying you find something that someone else had done "creepy" is a far cry from that as far as site standards go.

If the people who wrote that blog read this thread and are harmed by how callously people wrote their "reactions" to the blog, I am genuinely embarrassed to be part of a community that zealously defends such hurtful behavior.

Again, with respect, I think you are having a stronger-than-average response to this. I feel that you set the tone of that thread early with your "letter to god" comment and weren't happy with the way it went. I wish you'd taken this to MetaTalk sooner. This is not a community where we have a rule or even a guideline that says "Don't say negative things about the subject of a post"
posted by jessamyn (staff) at 6:08 AM on May 4, 2012 [25 favorites]

I found it all a bit creepy too. I didn't post about it, but I don't understand at all why you think that communicating that feeling would have been wrong. If the child's parents are concerned about their private feelings etc. they probably shouldn't be posting for internet attention.
That said, I am obviously sympathetic to their loss.
posted by bystander at 6:11 AM on May 4, 2012

Actually, I find the lack of empathy shown in that thread for people who have a negative visceral reaction to this blog itself somewhat problematic. (Not that I said "reaction", not "judgment".) It is perhaps legitimate to discuss whether one should report such a reaction on the internet (though not to attack someone over the issue), but the fairly aggressive attacks on the people's reactions themselves, reactions that were well out of their control, could have been much more tempered by some attempt to understand them.
posted by advil at 6:14 AM on May 4, 2012 [1 favorite]

I'd prefer people not refer to parents of a dead or dying child as creepy, but what has really bothered me is the the back and forth battle between 'don't judge their grief' and 'don't judge my reaction to their grief.' It's all very meta and name-cally and is no longer related at all to the original post. Arguments over whether or not it's creepy are one thing. Arguments over whether or not feeling creeped out by it is sociopathic are bothersome. I've been flagging stuff left and right as breaking the guidelines (although my flags are all still there - taunting me), and I expected to see it moved over here a while ago, but it seems like it's mostly fizzed out at this point.
posted by Dojie at 6:15 AM on May 4, 2012 [1 favorite]

I haven't really seen what you're describing

In the neighborhood of the poster's example, there's this - which also ended up in the grey.

Female bodybuilding is also on our Doesn't Do Well list.
posted by Trurl at 6:15 AM on May 4, 2012

If the people who wrote that blog read this thread and are harmed by how callously people wrote their "reactions" to the blog, I am genuinely embarrassed to be part of a community that zealously defends such hurtful behavior.

This has happened a few times here, where people (including myself at least a few times) will be saying "this book/blog/article sucks big donkey balls!" and then BAM! the original author shows up and you have that interesting moment of rereading what you wrote and thinking about how they might feel. That's good for us as a community; we aren't writing in a vacuum and there are real people with real feelings out there -- but equally, if they are going to participate in public forums, they also have to put on their big kid pants and deal with both positive and negative reactions.

I glanced at that FPP when it was new and found it so unbearably creepy that I closed it down and have made sure to not go back. Not something I want to participate in even reading, and by extension not a conversation I want to be part of, either.
posted by Forktine at 6:18 AM on May 4, 2012

People have said what I wanted to say, so I QFT:

'I think it's fine for people to say they are disturbed by something. I mean, here you are saying you're disturbed by something, and many of the commenters you're referencing may find that hurtful.
posted by rtha at 5:54 AM on May 4 [2 favorites +] [!]'

'I think we've become such a politically correct-afraid to hurt anyone's feeling society that we tend to retreat from difficult discussions and hide behind being empathetic.
posted by rich at 5:59 AM on May 4 [1 favorite +] [!] '

'I glanced at that FPP when it was new and found it so unbearably creepy that I closed it down and have made sure to not go back. Not something I want to participate in even reading, and by extension not a conversation I want to be part of, either.
posted by Forktine at 6:18 AM on May 4 [+] [!] '

------------
To me setting up a blog in the manner that it was, is creepy. And I also found it creepy that the OP of the FFP posted it, assuming the blue is for the very best of the internet. I understand we might need more awareness for Spinal Muscular Atrophy and many other diseases, however, I question if the FPP was 'properly' set up. In the end it seems (I have not read the thread myself) the discussion took a different course and was not pointing towards the actual issue of SMA and genetic screening.
posted by travelwithcats at 6:35 AM on May 4, 2012

Be prepared to hear what I have to say about that and how harmful and NOT empathetic your behavior is.

Be prepared to hear me say "fuck off and climb down off your moral paper horse". Your judgmental tone is annoying and dull in that it prizes empathy above any other virtues. It downplays and disregards other people's thoughts and feelings while hiding behind a self righteous, passive aggressive wad of narrow minded thinking.

Not every person is like you and there's not a goddamn thing wrong with that.
posted by Brandon Blatcher at 6:45 AM on May 4, 2012 [12 favorites]

I think the tail end of that SMA thread and the reasons behind this MetaTalk thread are due to the subtle distinction between saying the way the parents wrote in the voice of their deceased child was creepy and people saying the grieving parents are creepy. It may be subtle, but it is important to note how different they are, because I don't think anyone is saying the latter, which is what this thread presupposes.
posted by mathowie (staff) at 6:51 AM on May 4, 2012 [14 favorites]

The thread took an unexpectedly emotional turn when Avery died, this happened just after the post was made. The discussion went from "Ascribing thoughts and feelings to an infant that doesn't really have those thoughts and feelings is kinda weird way to raise awareness about SMA" vs. "They must really be going going through a lot, god bless them" to "Ascribing thoughts and feelings to an infant that doesn't really have those thoughts and feelings is kinda weird way to raise awareness about SMA" vs. "You can't imagine their pain!"

I stepped out but was unsurprised to see the argument still going. For what it's worth, I didn't see anyone being disrespectful in their discussion and it's hard to fault anyone for their choices or being overly emotional when a child's death is involved.
posted by Slarty Bartfast at 6:57 AM on May 4, 2012

To find out many members of the community of metafilter feel like pointing out how revolting people are any time we have an emotional reaction no matter who that harms constitutes empathetic behavior is disturbing to me.

This does not feel like an accurate summary of what has occurred in this case to me.
posted by robself at 7:02 AM on May 4, 2012 [1 favorite]

I too had a negative reaction to that blog, and so didn't post in the thread.

But it really bugs me that there seems to be a willful misreading of all the comments that begin with incredible sympathy for the parents and an acknowledgement that they are doing what works for them and which then go on to say the blog creeps them out or whatever. Several posters (I'm thinking of jokeefe of the top of my head) posted something along those lines and were attacked for it.

You may say "well, why post the second part?" Well, why comment on anything at all? The post was made so people could talk about the link, yeah? People are talking about the link.
posted by gaspode at 7:04 AM on May 4, 2012 [6 favorites]

I'd prefer people not refer to parents of a dead or dying child as creepy, but what has really bothered me is the the back and forth battle between 'don't judge their grief' and 'don't judge my reaction to their grief.' It's all very meta and name-cally and is no longer related at all to the original post

And it's so fucking BORING, too, and, unfortunately, totally predictable for posts like this.
posted by ThePinkSuperhero at 7:04 AM on May 4, 2012 [4 favorites]

I really do respect that human beings can't help what they feel. But then there is this reality where what we say and do with our feelings does hurt people. I guess I do assume that people like Brandon Blatcher and anyone else will say whatever they want in response to what I say. But it cuts so deep. I have huge traumatic reactions to conversations on the internet. Living with PTSD and traumatic grief means that hearing people words and responses and make your whole body suddenly go into shock and sweat drench out of your body and the room spin around.

I don't like to hide from the world because I want to participate in it but people's words DO hurt people. I understand that people can't help it when they want to sexually abuse people, physically harm people, avoid human beings in unbearable agony, feel creeped out by various diseases and conditions.

I just do think that words can genuinely harm people-- I am willing to say I signed up for it because I know that is how the world works. You participate- people don't care if they psychologically shatter you and leave you in a puddle on the floor. I understand that.

I'm just not sure these people understand that yet. I guess I just found it tragic that I community I was participating might cause that kind of harm to them at such a fragile time. I really genuinely worry about thier safety hearing the world freeform thoughts about how creepy they are. I don't think anyone is wrong for feeling creeped out-- I'm just not sure these people actually signed up to be psychologically shattered or understand that social contract they were signing.

I think it's a cruel thing to do to people just because you can, when you could also choose not to. I'm not sure if some people understand how traumatic the words of others can be.

I do believe everyone deserves compassion even if they harm others. I just wish I could beg the world to have mercy. Have mercy on people in unbearable suffering.
posted by xarnop at 7:06 AM on May 4, 2012

"bitch had it coming posting on the internet" and all that

I don't think I ever suggested that, just so we are clear.
posted by Mezentian at 7:08 AM on May 4, 2012 [1 favorite]

there will always be somebody who wants you to hget raped for daring to write that Star Wars is better/worse than Star Trek

Come on, do better.
posted by thinkpiece at 7:08 AM on May 4, 2012 [1 favorite]

The thing is, with stories like that, what can one say except how tragic it is?

I don't read those threads because I know they will upset me, and I can't come up with a useful response.
posted by mippy at 7:09 AM on May 4, 2012 [1 favorite]

I think the tail end of that SMA thread and the reasons behind this MetaTalk thread are due to the subtle distinction between saying the way the parents wrote in the voice of their deceased child was creepy and people saying the grieving parents are creepy.

People have been saying that about Madeline McCann's parents for years, and worse. Whatever tragedy you face, people will have an opinion on whether you're at fault, whether you're dealing with it appropriately, whether you need to shut up about it now. I'm not even a parent, so I can't get inside the head of someone who has lost a child or is facing that loss soon. I don't know what coping mechanism or behaviour I'd be showing. But the nature of the Internet Hate Machine, and the nature of humans, means it's easy to judge the parts of it we do understand.
posted by mippy at 7:11 AM on May 4, 2012

I really genuinely worry about thier safety hearing the world freeform thoughts about how creepy they are.

I don't understand what you mean by this. I don't think you're suggesting that saying "I think the thing they're doing is creepy" is threatening their safety, are you?


I think it's a cruel thing to do to people just because you can,

Jesus christ. Going to the parents' blog and being all "You suck and are horrible for doing this" is cruel. Saying on a totally different forum "I am creeped out/disturbed by their blog" is not cruel.
posted by rtha at 7:14 AM on May 4, 2012 [23 favorites]

Also, I put a link to this meTa in the fpp, because that is SOP, in case you didn't know, xarnop.
posted by rtha at 7:17 AM on May 4, 2012

Also, this comment made me incredibly sad. Just earlier today, I was feeling vaguely put out about the fact that medical issues mean I'll never be able to drive. In the grand scheme of things, it's breaking a nail.
posted by mippy at 7:17 AM on May 4, 2012 [1 favorite]

"bitch had it coming posting on the internet" and all that

I don't think I ever suggested that, just so we are clear.

Nor was it my intention to imply that you (or anybody else here) was suggesting that.
posted by MartinWisse at 7:20 AM on May 4, 2012

people don't care if they psychologically shatter you and leave you in a puddle on the floor.

Again, with respect, you are waging a battle that appears to have very little to do with this thread or even this community. I am sorry that this is difficult for you, I truly am, but I feel that you are projecting your own emotional responses on to the people who were the subject of this blog post and then arguing by proxy for them. I do not think it's normative that people who have a widely-read blog about their child who has a life-threatening medical condition, people who have chosen to speak publicly about it, are going to be psychologically shattered if some stranger on the internet finds their response creepy. Seriously. I could just as easily argue from my position, that maybe they're emotionally reserved and couldn't give a fuck about what other people think. Or maybe they have a completely different emotional makeup.

I think we all agree that they're going through some difficult shit. Some difficult shit that they have chosen to speak publicly about, I stress again, and people have different reactions to that. Your assertion is that people are willfully choosing to be cruel because your response to this, from your perspective, is that people are being cruel. And yet people in this thread are not having the same response to those comments as you do. And we all have to balance our own personal responses in order to be able to discuss things as a community. All of our emotional responses are just one-of-many. If some of us are unable to deal with the emotional responses of others--ones that are fairly standard by the general zeitgeist of this community--then it becomes our responsibility to insulate ourselves.

I can't deal with people's raw emotions. I stayed out of that thread (except to keep a loose eye on it as a moderator). At some level we can't rely on other people to keep us emotionally safe and if your responses are so extreme that single threads can evoke that reaction, this becomes something you need to learn to manage.
posted by jessamyn (staff) at 7:21 AM on May 4, 2012 [33 favorites]

I have huge traumatic reactions to conversations on the internet. Living with PTSD and traumatic grief means that hearing people words and responses and make your whole body suddenly go into shock and sweat drench out of your body and the room spin around.

I'm sorry this is true for you, but this is true for you and isn't really appropriate to project on other people. I read that post, I read the comments, I felt, if anything, that the people who were ill-served by that thread (and now this one) were jokeefe and tzikeh. This thread sounds very much like an attempt to mandate what types of discussions can take place here, based on criteria that exceed all others for what constitutes free and respectful conversation in our world. Yes, there are expressions of disgust and modes of bad behavior that are not supported here, and that is as it should be. Commenting on the mechanics of an internet project is nowhere close to the things that we should discourage.
posted by OmieWise at 7:24 AM on May 4, 2012 [22 favorites]

Be prepared to hear what I have to say about that and how harmful and NOT empathetic your behavior is.

Knock yourself out, but by your own logic don't expect people to care.
posted by cjorgensen at 7:29 AM on May 4, 2012 [1 favorite]

I have huge traumatic reactions to conversations on the internet.

Totally understandable, we all have subjects we're particularly sensitive about. The key is to recognize that and either avoid those subjects or take measures to become less sensitive to them.

Asking others to change is fine, but one can't expect or demand that. Nor does it help to assign negative attributes to how their views or emotions.

Be well and take care of yourself.
posted by Brandon Blatcher at 7:29 AM on May 4, 2012 [6 favorites]

I have huge traumatic reactions to conversations on the internet. Living with PTSD and traumatic grief means that hearing people words and responses and make your whole body suddenly go into shock and sweat drench out of your body and the room spin around.

I don't mean to be at all cruel or uncaring, but seriously, if Internet conversations affect you so deeply, you may want to stick to the Green. I can be pretty thin-skinned too, so I'm not judging, just suggesting (hell, *I* spend most of my time on the Green). The Blue is a place where opinions will be challenged, sometimes civilly, sometimes less so, and it can be hard to know which way the comment thread will go. But it's perfectly appropriate for there to be disagreements there: that's what it's for.

I agree with what many have said here, that it was the blogging as a dying-then-dead child that was disturbing, not the overwhelming grief these people have been feeling. The death of a child is traumatic and tragic, and we get that, and many of us probably feel for them. But Metafilter is not their blog, it is a completely separate online forum where people discuss things and that's okay.
posted by smirkette at 7:30 AM on May 4, 2012 [1 favorite]

Living with PTSD and traumatic grief means...

...different things to different people. Not everybody's PTSD is equal, or was caused by the same type of events, or is triggered by the same type of things, or makes them feel like the room is spinning.

I am sorry for what you are feeling. However, I would gently and respectfully suggest that if it's true that you "have huge traumatic reactions to conversations on the internet," that is a problem that MetaFilter will not change itself to fix. Maybe MetaFilter can/cannot, maybe MetaFilter should/should not, but it isn't going to happen. Therefore you might need a different solution. I honestly hope you find it.
posted by cribcage at 7:31 AM on May 4, 2012 [5 favorites]

OmieWise is right. There are certain topics which upset me because they bring up memories of things I'd prefer not to spend time thinking about - it doesn't come up so much here as this is more of a blog than a discussion board, but when I've seen the thread titles elsewhere, I have to blink and click elsewhere, even if it's just a word or two. But I can't tell everyone else to stop discussing the same topics, topics which may well be just mundane to others. At the same time, a friend of mine has dealt with some of the things that people tend to slap 'trigger warning' on on the internet, and she's perfectly happy to discuss them with me. We can't anticipate the reactions of strangers, and we can't treat everything as a trigger just in case. It's tough for those who need to protect themselves, but the world sadly cannot bend to our will.
posted by mippy at 7:31 AM on May 4, 2012

mippy: "The thing is, with stories like that, what can one say except how tragic it is? "

I have several friends whose infants did not survive long enough to leave the NICU. In each case, they found themselves entirely overwhelmed by what they were going through at the time, and the long-term impact and grief of losing a child is still very present in their lives. The experience altered them -- all of them -- in deep and profound ways that were not immediately obvious. Support groups for parents who have cared for a sick, terminally ill child, and for those who have lost a child, can make a huge difference.

There is a sense of futility which often accompanies terminal illnesses. For the patient themself, their friends and family, and for those who observe from afar. But it's not futile to talk about what is happening. Discussions about these issues can help raise awareness and empathy and spur positive involvement. They can bring support to those who need it. They can educate those of us who have not experienced something similar about things that may or may not affect us down the road.

Perhaps Avery's parents' site is an attempt to fight that feeling of helplessness. I don't know. But there is no harm in discussing the topic. Or of focusing attention on research, or lack thereof. Or learning of someone's lived experiences with a disease that we may not have been even minimally aware of. And for those MeFites who have lost a child, it might even give them an opportunity in this community to connect to others who might have done so and share their stories.

I miss bunnycup. She was such an eloquent, passionate voice of experience on this topic.
posted by zarq at 7:33 AM on May 4, 2012 [10 favorites]

In the spirit of your question, in very broad terms, I think being disturbed or confused by something is human nature and I would like to think that admitting to those feelings in a mature way would be greeted with equal maturity here. For me, it's only when someone closes their mind to something and starts imposing their views on other people that it crosses a line.
posted by londonmark at 7:33 AM on May 4, 2012 [4 favorites]

As the OP of the thread in the question, I want to apologize for even posting it. I don't think I framed it very well because, well, I was having a damned hard time finding links good enough to include.

But before reading Avery's blog, I hadn't heard of Spinal Muscular Atrophy, either. And it sounded so horrible to me -- being cognitively aware and intelligent and bright eyed and knowing what was going around you, but not being able to control your body. And then there was this family who wanted to live every day of Avery's short life to the utmost they could. They didn't sit back and cry their eyes out like I more than likely would have done. They took an amazingly positive approach to both give themselves as many happy memories as they could before Avery died and to raise awareness for this disease that has a cure on the horizon.

I wanted to bring this to Metafilter because I thought that

a) there are a lot of people here
b) there are a lot of people who haven't heard of Spinal Muscular Atrophy
c) there are probably a lot of people on Metafilter who are carriers of Spinal Musclar Atrophy and don't know it even though it is the number one genetic killer of infants and toddlers. It kills more kids than Cystic Fibrosis, even though the number of people who are carriers is roughly the same
d) maybe Metafilter will help spread the word of SMA, or maybe a Metafiler couple or a newly pregnant Metafilter member will know to ask for this genetic test if they choose to seek genetic screening

It never occurred to me that other parents didn't cutesy speak as their children. My husband and I will often quip, "FEED ME ALREADY!" as Rosalie when she is fussing because it is taking too long for the food to go from spoon to mouth. And when she's on the ground and crying, we may say, "Goddamnit, Momymy, pick me up!" I saw the blog as an extension of that --- an extension of an imagined voice for a baby. I never had any idea that other people didn't do this, though I guess it seems reasonably they don't, since it was so instinctual to me. I thought the blog to be nothing more than what a lot of parents -- or maybe just Dr.E and I and no other parents do do this --- do every day. Who knew it was creepy? And I suppose now I will make a concerted effort not to engage in this creepy behavior at home as I had been doing since Toddler Zizzle was born.

I regret how the thread went, and part of that my have been my poor phrasing. But more than that, I regret the possibility that Michael and Laura Canahauti would come here and read that thread and take it as a reflection of Metafilter. I hope they don't ever see that thread, and I hope if they do, they find their way here and accept my sincerest apologies for it. I am sincerely sorry for introducing Avery to this community, but I do hope, despite how the thread went, some good can come of it.

But I'm not feeling terribly optimistic about that possibility at the moment.
posted by zizzle at 7:37 AM on May 4, 2012 [15 favorites]

What bothered me in that thread was the way some people really assumed the worst about the parents' intentions and the way people harped on the fact that the baby was not going to remember/realize what was going on. That's something a lot of people use as an excuse for keeping people with disabilities, cognitive and otherwise, from participating in the world at large. No one has ever accused me of posing with my child "like a pet" or of "parading" him around. It seems to be objectifying verbiage reserved for people who our society sees as subhuman--the disabled and sick.
posted by the young rope-rider at 7:38 AM on May 4, 2012 [9 favorites]

zizzle, it looks like you framed your post as a "people *should* read this" rather than "people would like to read this". Which often does not go well.
posted by gaspode at 7:41 AM on May 4, 2012 [6 favorites]

Arguments over whether or not feeling creeped out by it is sociopathic are bothersome. I've been flagging stuff left and right as breaking the guidelines (although my flags are all still there - taunting me), and I expected to see it moved over here a while ago, but it seems like it's mostly fizzed out at this point.

For what it's worth, I saw the flags and don't really disagree with you but was mostly hoping the fizzle would happen sooner and the situation would self-correct, and given the clear degree of emotional investment driving at least one side of that argument I was hoping it'd self-correct indeed because having to jump in with an explicit "hey, seriously, cut this out" note when people were already feeling like mutually misunderstood seemed like it could end up stirring things up when maybe they'd already cooled down.

I really, really didn't think it'd keep going as a slow-burn thing; in retrospect I wish I had left another note sooner (taz had already left a note previously).

xarnop, I basically want to echo everything Jessamyn's saying. I both appreciate that you're coming from a place of feeling very strongly about this stuff and it being something that has strong emotional pulls on you, and feel like this is mostly an issue of you having different expectations about what's acceptable baseline discussion on this than pretty much the bulk of the mefi userbase. I get that it's a tough topic for you, and I'm sorry about that, but my feeling is folks weren't out of line in that thread at all as far as the level of their commentary and, yeah, this should have come to Metatalk, or at least have stopped been being a thing in that thread, much sooner.
posted by cortex (staff) at 7:41 AM on May 4, 2012

People express how they feel in all kinds of ways. Avery's parents did and the people in the thread on the blue did. You can't expect everyone to have the same emotional response to something; it's just not going to happen. I would love it if empathy and kindness were not so underrated but there are people who feel just as strongly about 'speaking their truth'.

The only thing you can do to protect yourself from the feelings of others, particularly if they run contrary to yours and hearing them express their thoughts is causing you pain, is to not engage. It is highly unlikely that you will change their minds. I understand how you feel - it is hard to hear people criticize others who are going through almost unimaginable pain - but as rtha said, this is not the grieving parents forum. We are one step removed here and so giving voice to misgivings over style and tone and whatever else on this site is nowhere near the same as going on to the linked page and telling the parents that speaking on behalf of their infant daughter is creepy.

There are many, many people reading the posts on the blue. Some speak up, some don't. I can't tell you how much I've learnt from Metafilter over the years. I don't always agree with all the comments but that's just to be expected, right?
posted by h00py at 7:47 AM on May 4, 2012

But more than that, I regret the possibility that Michael and Laura Canahauti would come here and read that thread and take it as a reflection of Metafilter. I hope they don't ever see that thread, and I hope if they do, they find their way here and accept my sincerest apologies for it. I am sincerely sorry for introducing Avery to this community, but I do hope, despite how the thread went, some good can come of it.

This reads as unmitigated condescending BS. What you appear to be sorry for is that not everyone feels exactly as you do, and what you appear to be afraid of is that the parents are as unable to recognize adult conversation, not about their grief but about how best to publicize it, in the same way that you are not able to recognize it. Your comment here certainly is not an attempt to respectfully further the conversation, as you explicitly characterize the behavior of people who you simply don't agree with as shameful.
posted by OmieWise at 7:48 AM on May 4, 2012 [34 favorites]

My personal feeling is it's always good to remember there are people with feelings attached to usernames and that stuff we post here often does get back to the people involved because of the influence of this site. That has happened to me with many of the FPPs I've made before. I'm not saying any comments in that thread were wrong, just that it may be naive to think what we say here won't get back to people given this site's popularity, and that oftentimes the subject of the thread can't control what gets back to them, whether it's good or bad.

Zizzle, I didn't AT ALL read your comment as condescending, and don't AT ALL agree with OmieWise.
posted by onlyconnect at 7:58 AM on May 4, 2012 [3 favorites]

This reads as unmitigated condescending BS.
posted by OmieWise

I apologize if it reads that way.

That certainly wasn't my intent.
posted by zizzle at 7:59 AM on May 4, 2012 [1 favorite]

d) maybe Metafilter will help spread the word of SMA, or maybe a Metafiler couple or a newly pregnant Metafilter member will know to ask for this genetic test if they choose to seek genetic screening

And finally, we get to why this was actually a bad post for MetaFilter, straight from the OP's mouth. This isn't a site for raising awareness or spreading the word, unless it about cool stuff you found on the web.

More cool stuff, please. Less "here is a thing you all should be concerned with."
posted by Edogy at 7:59 AM on May 4, 2012 [4 favorites]

OmieWise: " This reads as unmitigated condescending BS. What you appear to be sorry for is that not everyone feels exactly as you do, and what you appear to be afraid of is that the parents are as unable to recognize adult conversation, not about their grief but about how best to publicize it, in the same way that you are not able to recognize it. Your comment here certainly is not an attempt to respectfully further the conversation, as you explicitly characterize the behavior of people who you simply don't agree with as shameful."

I didn't read her comment that way. Respectfully, I think you may be projecting something here that was not what she intended.
posted by zarq at 8:00 AM on May 4, 2012 [2 favorites]

More cool stuff, please. Less "here is a thing you all should be concerned with."

I respectfully disagree. It's possible to have both.
posted by h00py at 8:02 AM on May 4, 2012 [1 favorite]

And finally, we get to why this was actually a bad post for MetaFilter, straight from the OP's mouth

The OP hoping the post would be educational doesn't mean it was a bad post for Metafilter, though. And the blog had already gone viral almost a full day before the Metafilter post, so I would think it fits the "cool stuff found on the web" rule (barring the debate on each person's individual decision on what is cool).
posted by ThePinkSuperhero at 8:03 AM on May 4, 2012 [3 favorites]

I think there were several good reasons for finding that blog at least somewhat questionable, and I think that those who expressed that view had every right to do so and, for the most part, did so reasonably. We talk about what gets linked here. That's what the comments section is for. We aren't always going to agree, and sometimes people are going to dislike stuff we like. They should be perfectly free to say so.
posted by Decani at 8:04 AM on May 4, 2012 [1 favorite]

I went to a funeral with my father. Afterwards I said, "I found that really disturbing." We talked for a while about how strange the funeral was-- mainly the view of the afterlife that was expressed. Would we have said those things if we thought there was a chance the family, who had chosen to grieve that way, would hear them? I don't know. We certainly wouldn't have said those things in the church. But I was thankful to have someone there to discuss it with, because it was disturbing. We're all going to die. We've all had people close to us die, or we will. (In the case of me and my father, our mother and another close family member had just died.) Looking at the way someone deals with death very often hits us in that place. I don't think that when people criticize the way someone does these things, it is fair to assume they are speaking from a position of blissful invulnerability.

I do think that losing a child is an especially horrible thing, one that most people don't deal with so it feels hands-off to a lot of people who haven't experienced it.
posted by BibiRose at 8:04 AM on May 4, 2012 [6 favorites]

I don't think I'm projecting. I'm not sure how else to read that last paragraph except as a (not so) coded condemnation for those who did not react with pure grief to the posting. All of the apologizing to the parents begs the question of whether or not there is anything to apologize for. This is quite difference, for instance, from simply saying "I'm sorry I posted that because I wish it had gone differently."
posted by OmieWise at 8:06 AM on May 4, 2012 [4 favorites]

And I suppose now I will make a concerted effort not to engage in this creepy behavior at home as I had been doing since Toddler Zizzle was born.

I either read this as exaggeration for effect or being way too concerned about the feelings of random other people on the internet. There is a big difference between your at-home baby talking to your family and deciding to put this on a public blog. And I'd be arguing strenuously if people were just like "Well they decided to have a blog so they deserve us insulting and humiliating them!" but I feel that commenting on how people choose to express themselves publicly as opposed to privately is something that reasonable people should be able to talk about.
posted by jessamyn (staff) at 8:19 AM on May 4, 2012 [15 favorites]

I have surprisingly (for me, for some, perhaps not for all) huge emotional reactions to threads about pets dying, so I don't go into askmes where people are asking about whether or not it's time to put a pet to sleep.

What's maybe a little weird about this is I don't have that reaction, or at least not at that level, to threads about parents dying, even though both of mine are dead and I have a lot of....feelings about that.

Different people are going to react differently to different kinds of sad/awful situations. That your your reactions are different from someone else's doesn't make anybody's automatically wrong.
posted by rtha at 8:31 AM on May 4, 2012

I have very strong opinions about sentimentality versus sentiment, namely that anything which evokes emotional responses to guide decision-making or as a motivating force is usually something for which it's important to dispassionately assess what ends that emotion is being harnessed to further. So I don't post in threads (or I try not to) that mash that button. But I'm honestly glad that people who have the ability to express those types of concerns speak up eloquently about things that are designed to motivate with emotion.

I'm sure that the suffering of those parents is unimaginable and it would be terrible if we mocked their grief or tore them to pieces while they are hurting. But I didn't read anything that was even remotely similar to that. Just because people didn't universally react as intended to a post doesn't mean they're sociopaths. I can't help but think it is almost as bad to say something like that to members of our community who made perfectly civil remarks in a thread (who are here to see that judgment) as it would be to make harsh judgment on the subjects of that post (which, unless something was deleted in that thread, wasn't even done here) in a public forum that they may never read.
posted by winna at 8:32 AM on May 4, 2012 [12 favorites]

I have huge traumatic reactions to conversations on the internet.

That would seem to be the problem.

MetaFilter is a place where adults talk about stuff. All kinds of stuff. Not all of that stuff is stuff you're going to find interesting. Some of it you're likely to find offensive or triggering.

It's on you, the reader, to avoid those threads, generally speaking.

I read no more than 10-20% of FPPs and of those, maybe only half will I read the comments. A big chunk of that is because, believe it or not, I can't actually spend all day reading MetaFilter. There's another decent chunk of stuff I don't read because it doesn't interest me. But it clearly interests other people, and hey, that's cool. There's a small chunk of stuff I don't read or comment on because my value system and beliefs are pretty significantly at odds with most of the rest of the user base, and I don't feel I'd have anything useful to add to those conversations. And there's a very small subset of users that I just completely ignore, 'cause I can't stand 'em.

Here's the thing though: that filtering rubric is all self-imposed. Which is really no different than the rest of life, when you think about it. I can only experience a tiny fraction of what's out there because I'm finite, and there's a bunch of stuff that I don't want to experience, so I don't go looking for it. MetaFilter is the same way. If something is going to provoke a "huge traumatic reaction," don't read that post. No one's making you. The fact that you aren't ready to deal with whatever it is doesn't say anything bad about you, but neither does it mean that other people shouldn't talk about it in ways that you can't handle but are otherwise civil and mature. You not being able to handle something does not make said something inappropriate per se, just inappropriate per you.

So if you don't like a post, don't read it. If you don't like a comment, don't read it or the responses to it. MetaFilter is still the best site on the web, and the fact that it has stuff I don't like is actually one of the main reasons. Even if I don't read something or interact with it, it's something I at least have to have on my radar as a thing, and that's good for me.
posted by valkyryn at 8:38 AM on May 4, 2012 [5 favorites]

OmieWise: "I don't think I'm projecting. I'm not sure how else to read that last paragraph except as a (not so) coded condemnation for those who did not react with pure grief to the posting.

Her last paragraph was quite vague about what she was objecting to. She did not say that people should be expressing nothing but pure grief in response to the post. She did not say that the parents should be above any sort of critique, either.

Did she do either of those things and I missed it?

All of the apologizing to the parents begs the question of whether or not there is anything to apologize for.

I don't know if there's necessarily anything to apologize for in the thread. Personally, I thought the comments decrying them as (paraphrasing here) self-involved, attention-seeking narcissists might have stemmed from ignorance instead of direct experience. I could be wrong. Dojie's comment in the thread seemed insightful.

Even though zizzle thought there was a reason to apologize, I do not see how her comment (as you said) attacks anyone who disagrees with her as shameful.

This is quite difference, for instance, from simply saying "I'm sorry I posted that because I wish it had gone differently.""

Would that really have been an improvement? It begs the question of how she would have wished it had gone differently. Seems like a circular argument.
posted by zarq at 8:41 AM on May 4, 2012

More cool stuff, please.

because parents with dying babies just aren't cool, you know?

how utterly shallow of you
posted by pyramid termite at 8:42 AM on May 4, 2012

If anything is shallow, it's taking something out of context so you can condem it and feel better about yourself.
posted by spaltavian at 8:45 AM on May 4, 2012 [1 favorite]

Every seems to be taking the "be nice" to heart, eh?
posted by smackfu at 8:45 AM on May 4, 2012 [2 favorites]

This thread reminds me of the memes on Facebook - people change their avatars to a picture of a favourite cartoon character 'to raise awareness of child abuse' and anyone who chooses not to (because they don't see the point, because they like to keep their activism off Facebook, or because they might be child abuse survivors and don't want to be 'confronted' with it when they log in to see their mum's holiday snaps) or criticises it in some way gets accused of NOT CARING ABOUT THE CHILDREN.

I think calling a blog about a child which is dying 'creepy' misses the point a bit - it's about a terrible disease and the parents can deal with that any way they damn choose - but it's possible to think this individual blog is creepy/not something they want to read about and still give a shit about infant terminal disease.
posted by mippy at 8:47 AM on May 4, 2012 [5 favorites]

I'm having a hard time understanding how we could call ourselves an empathetic community

Communities have all sorts of people. There are people into gay sex, eating disorders, and burn scars and there are those who are creeped out by those things. Most people are somewhere in between. In an "empathetic" community you listen to other peoples' points-of-view, even when they aren't your point-of-view. You can feel free to disagree and to voice your disagreement, but the "empathy" part comes in where you respect other people for having a point of view on their own.
posted by The 10th Regiment of Foot at 8:54 AM on May 4, 2012 [2 favorites]

And a lot of commuties are much more internally empathetic than externally empathetic. Like if someone had told a similar story to this blog post in a comment, I doubt people would have said the same kind of things to them.
posted by smackfu at 9:00 AM on May 4, 2012

pyramid termite: "because parents with dying babies just aren't cool, you know?

how utterly shallow of you"

Ouch. Jeez. That really was not fair. There was a larger context there.
posted by zarq at 9:01 AM on May 4, 2012 [2 favorites]

And I'd be arguing strenuously if people were just like "Well they decided to have a blog so they deserve us insulting and humiliating them!" but I feel that commenting on how people choose to express themselves publicly as opposed to privately is something that reasonable people should be able to talk about. -- jessamyn

Sure people should be able to speak about those sorts of things. Rarely, though, do discussions about about how something is twee/distasteful/etc result in interesting or productive output. With so much available to consume, ponder, discuss, comment upon why does this crap seem to attract so much attention? Having an embarrassing accident in public might invite rubber necking but it doesn't make the staring and snide commentary any less crass.
posted by mce at 9:07 AM on May 4, 2012

because parents with dying babies just aren't cool, you know?

how utterly shallow of you

It is also uncool to deliberately mischaracterize what someone has said.
posted by rtha at 9:18 AM on May 4, 2012 [3 favorites]

I feel that commenting on how people choose to express themselves publicly as opposed to privately is something that reasonable people should be able to talk about.

I fully agree. Though I stayed out of the thread, I also share a perspective closer to jokeefe's and tzikeh's. I don't, however, feel that I'm unsympathetic to the family's loss. I'm just critical of their approach to it.

Not insignificant in this critique is that the stated purpose of this approach is to promote disease awareness. However, the form chosen seems to reduce the success of the project. I say this because I first encountered it yesterday on a friend's Facebook. The friend has a new baby, and I'm sure she found the blog in one of the parenting blogs or FB groups she's reading. I took a brief look to try to understand what was going on here, and posted a comment to the effect that it "creeped me out a little" (yes, same terms). But added the addendum that I recognize that people cope with grief in different ways and resisted further judgment - something which MetaFilter discussions have significantly heightened my awareness to in the past. There was some followup discussion but it fortunately didn't turn into a shitstorm.

The thing is, had you asked me at any time between yesterday and this moment when I'm reading about its reception on MetaFilter, I would not have been able to tell you what the disease was, what its cause was, or what you're supposed to do about it. I spent a few minutes with the blog, but was so distracted by and put off by its approach - and frankly, so confused by the focus on activities and the "bucket list" - that any message about disease was completely lost to me. I knew only that a young baby died of disease, something that happens far too often. The medium obscured the message, in this case. Well, in fact, it became the message, as happens. In the end,it's clear that some people now know what SMA is and have so idea what to do about it. Perhaps that's enough of a success. For me and, I gather, a few others, the curiosity and confusion factors and distracting framing interfered with understanding this intended message.
posted by Miko at 9:19 AM on May 4, 2012 [2 favorites]

Yeah it sounded to me more like snide commentary rather than, I genuinely need to talk about my feelings in response to this blog.

I value self expression even if it may be hurtful to others, but I do think when you're inner thoughts are about something that really might hurt someone to express that you might put a little bit of effort into saying it in a way that refers they are your own emotions rather than that you really think badly of the person in question.

I also think inner thoughts have varying degrees of "need to be expressed". If'm sitting down with someone and notice that they have a lot of hair on their arms, the fact that I noticed that doesn't mean I need to say "Hey! I notice you have hair on your arms!" In fact, I don't even need to express that at all, anywhere. I don't feel the need to go to a secret group of people and whisper "OMG I sat next to someone and they're arms were hairy!"

I don't personally think it's a big deal whether people's arms are hairy or not. I have hair preferences but they don't matter particularly much to me at all, and I recognize that others feelings about things relating to themselves are probably a lot stronger than my random thoughts that go through my head that aren't really all that meaningful or relevant.

I don't know, I guess that was part of why I stopped hanging out with people in highschool. I couldn't understand why these people would jsut sit there and say bad things about each other "Did you see her shirt, I heard her mom is a prostitute, yuck!, she should really try to do her hair better" chirp chirp chirp, mean little birds. I have a very hard time with critical/judgemental speech that seems to be geared toward othering. That's ok I liked sitting behind the gym for lunch. Ants make very good friends and they don't gossip or say mean things at all! And they like my Dr. Pepper!

So I'll try to relax about that. Whatev, you think those wackos from Avery's blog are nutzo, you should hear about my wackjob coping mechanisms.

Miko-- I share the same reaction and find nothing offensive about talking about that. I just simultaneous doubt these people could do anything differently. However I don't think anyone can do anything differently. People can't help being creeped out, I can't help being a wackjob, people can't help think what a wackjob I am--- until we can.

The best way to make change is at least first to figure out what that change might be, and to understand there are often obstacles to changing those things that take time and understanding-- and possibly support and collaborative/systemic efforts.

Also, probably since my daughter's birthday was two weeks ago, I probably am probably not making any sense more than I usually don't make sense. I promise that I very much love everyone, even people who do terrible things and people who are nice, and people who are inbetween. Everything is ok, and also, I just hope that we can find ways to reduce suffering for others. I guess I was genuinely hoping metafilter would do more of that because metafilter often does those kinds of discussions very well.

but i agree with Miko's point -- and I think that if the people who wrote the blog were emotionally capable of doing it differently they should take into account the ways the blog tends to be unsettling and try to make it less creepy. But that also might be why they hit home with a lot of people and wound up with a lot of money. So-- maybe they did it right?

Anyways-- I still think super love will save us all, and better to express than not. So out with all the "I'm creeped out" thoughts! Let them be free! Into the light!

And her I dissolve into my own nutty coping land. Cheers to all.
posted by xarnop at 9:28 AM on May 4, 2012 [2 favorites]

I value self expression even if it may be hurtful to others, but I do think when you're inner thoughts are about something that really might hurt someone to express that you might put a little bit of effort into saying it in a way that refers they are your own emotions rather than that you really think badly of the person in question.

Are you saying that you don't think those who disagreed did that? Because I read their comments twice and thought they took pains to make that clear.
posted by Miko at 9:34 AM on May 4, 2012 [4 favorites]

I'll just echo jessamyn and cortex, as well.. but my final comment on this:

"I understand that people can't help it when they want to sexually abuse people, physically harm people, avoid human beings in unbearable agony, feel creeped out by various diseases and conditions."

Equating sexually abusing people to saying you are weirded-out by some disease or weirded out by the way someone deals with a disease or someone they care about having a disease) just seems like such a wide chasm to cross.

There are just so many layers between these things, and it just doesn't seem like you're applying a filter here.

To your hairy arms allegory - your initial complaint is that someone sat down with someone who *doesn't* have hairy arms, but might know someone who does, and doesn't share the same anti-hairy arm belief, and therefore the person shouldn't even bring up their distaste for hairy arms because it might offend.

Yes, there is room for discretion when dealing with potentially sensitive topics. But sacrificing a discussion or debate wholly to avoid potentially upsetting someone who may or may not be in the room, and may or may not even be upset is disingenuous, and detrimental to learning, and an overapplication of emotional self-protection.

If people are upset because they can't listen to other peoples' views with some level of understanding, even when disagreeing with it, then what's the point?
posted by rich at 9:38 AM on May 4, 2012 [1 favorite]

So I'll try to relax about that. Whatev, you think those wackos from Avery's blog are nutzo, you should hear about my wackjob coping mechanisms.

It's belaboring the point but nobody in the thread on the blue called them nutzo, nuts, wacko, wackjob, etc. I get that you were not feeling okay about people saying their subject experience of the blog was one of creepiness, but there's what people actually said and what you have been sort of declaring that people meant and the gap between those is pretty important because it feels like you are consistently mischaracterizing what was said as something other than anything that was actually being said or how it was being said.

I'm really genuinely sorry this is such a tough and personally-meaningful topic for you. I'm right there with you in spirit on the maybe love saving us all thing. I just think this is a situation where there's a mismatch between what you're expecting and maybe reading into a discussion and what's actually there, and I don't think what's actually there in this case is a very good example of the stuff you're raising otherwise reasonable-in-principle points about. This was not a thread full of people shouting terrible judgemental things about people being nutzo wackjobs.
posted by cortex (staff) at 9:39 AM on May 4, 2012 [9 favorites]

Miko-- I share the same reaction and find nothing offensive about talking about that. I just simultaneous doubt these people could do anything differently. However I don't think anyone can do anything differently. People can't help being creeped out, I can't help being a wackjob, people can't help think what a wackjob I am--- until we can.

The best way to make change is at least first to figure out what that change might be, and to understand there are often obstacles to changing those things that take time and understanding-- and possibly support and collaborative/systemic efforts.

You know, you do this a lot. You get tangled up in an emotionally fraught thread, repeatedly insist on the worst possible interpretation of someone's comments - even when they come back to clarify, explain, put into different words, etc. - and then end up saying something like "oh, I don't really mean you're horrible" or "I just got caught up, I can see what you're saying" or "yeah, you're right, you have the right to say what you said."

All of us misread each other sometimes. That's the nature of humanity, especially in a text-only medium. But I've noticed that you do it a lot. Maybe this is something you can think about changing.
posted by rtha at 9:44 AM on May 4, 2012 [4 favorites]

Maybe it's a communication issue then:

"I'm sorry; the use of first-person point of view to give a voice to someone who cannot speak for themselves seems unbearably presumptuous to me."

That certainly sounds like thinking badly of the people.

"It creeps me right the fuck out that they're fabricating some kind of adolescence their child isn't going to have while using their dying [now deceased] infant as a prop. Brrrrrrrrrr."

That sounds like thinking badly of the people.
I genuinely don't understand how thinking that sounds like thinking badly of someone is a misreading?
posted by xarnop at 9:48 AM on May 4, 2012

That certainly sounds like thinking badly of the people.

But you just said you're able to make distinctions between people and their behavior.
posted by Miko at 9:50 AM on May 4, 2012 [5 favorites]

So, I have a 10 month old, and due at the same time as him (one on the same date) were two of my friends' babies (one close friend, one less-close). Both were born early (one at less than 30 weeks) and spent considerable time in the NICU. Both sets of parents set up facebook pages for the kids.

These were both children I cared about, not just because they were my friends' kids, but also because I was pregnant with these women and we were expecting our babies at the same time. I helped watch their toddlers, who were about the same age as my toddler, when the parents were at the NICU sometimes, because I live not far away. And so there was a special horror for me in the early, traumatic births, in the NICU, in the touch-and-go, life-and-death situations. Obviously not even a little comparable to the families', but when you're pregnant too and there but for the grace of God go you ... it was hard, and I was emotional about it.

I know that people writing in the voice of their child is a thing, and it's not really a thing I enjoy, as much as I occasionally give voice to my children's (or cats') imagined inner thoughts. One of these families posted on facebook as parents: "Joey had a rough night, and gave us quite a scare around 4 a.m. We are continuing with kangaroo care and he will have another surgery in three days if he can gain another 25 grams of weight. We appreciate your support and prayers; this is very hard; we love him so much." The other family posted as the child: "I had a difficult day today, and threw up everything I ate, but I know mommy and daddy love me so much, and I can hear all of your prayers! I hope I will have my next surgery next week, the surgeon says I am almost big enough!"

This posting as the child was absolutely horrifying. And I'm not exactly sure why. But it literally made me nauseated -- not with disgust, but I think with sort-of fear and pain. I mean, babies don't have a whole lot of agency, I know, but somehow it seemed to turn the baby into an object? A blank slate on which the parents projected what THEY were going through and ignored what the baby was going through. Like they were trivializing the person at the center of the situation in order to put themselves in the center? Or, since I know they were keenly aware of what the baby was going through, and their entire lives were centered around that baby at that moment, maybe it was so hard because I knew they were sublimating the fear and horror they felt about their child's pain and struggle by projecting this sort-of Disney-movie internal monologue onto the baby?

A number of people in our social circle had the same reaction; some of them had to unfollow or hide the page where the parents were posting as the baby because they found it so upsetting. And, yes, creepy was a word that got used a lot, by a lot of people. My husband told me, "You have to give me the updates, I can't read that, it's too upsetting." It was just nightmarish, where reality is twisted into a sort of horrifying near-copy of itself.

Of course I never said this to the parents. Of COURSE not. They have the right to cope with their pain and fear in any way that they can. But a lot of people react to parents speaking in the voice of their voiceless children, and a lot of people have a visceral, physical reaction to it, as much as xarnop has a visceral, physical reaction to people calling it creepy.

I saw this blog about Avery's bucket list when it started to go viral a few days ago, and I thought it was a nice idea (though I'm not fond of the term "bucket list") to create memories with the child for her family. But when I opened it to read a little, and saw it was narrated as the child, I had to literally push the computer away from me, and I knew I wasn't going to be able to read it. It's just that upsetting. Plenty of people disagree, including my friends who wrote in their child's voice from the NICU, and I don't think less of them for it; I think they were coping with an unimaginably horrible situation as best they could, and I don't dare to think I would cope any better. I imagine I'd cope worse.

But it's really -- writing in a child's voice really freaks out a lot of people. I guess I wrote this comment for those of you to whom it's normal (which is fine!), to try to explain a little WHY it's so upsetting to those of us it freaks out or upsets. I don't know that I did a very good job, because it's really hard to explain, but, well, there's my attempt.
posted by Eyebrows McGee at 9:52 AM on May 4, 2012 [67 favorites]

In other words, it's possible to see someone's behavoir as presumptuous or creepy while still feeling sympathy for their awful situation.

So I'm not sure what you mean by "think badly of;" I can think people do some lousy, creepy, or clueless things without thinking they're terrible and awful. As a corollary, I don't think the lousiness of someone's situation automatically means that anything they choose to do or say must be met with unalloyed praise or acceptance.

It's possible to think they are doing things that are "creepy" even as you understand them as humans in a very difficult spot. And finally, it's not that they are doing it that matters so much, it's the idea that we are all as individuals being asked to endorse the idea, and it's an idea some of us are very uncomfortable with.
posted by Miko at 9:54 AM on May 4, 2012 [4 favorites]

My first Meta callout!

I just wrote a long paragraph about how Mefi is a discussion forum where we can parse out media events and the way modern life interacts with the internets and so on, and how I love that anything here can be up for discussion (not approval: big difference), and then deleted it, because I don't really feel like reiterating what I said over and over in the thread itself which is that there's an enormous gap between talking about the blog itself and condemning the parents for writing it. I don't believe there was a single comment that did so, and this constant accusation that "somebody called the parents creepy" is not what I remember from the thread at all (I remember tzikeh saying that s/he was "creeped out": again, big difference). I also found aspects of that blog to be really troubling as well, and tried hard to temper that by saying that I was terribly sorry for what the parents are going through. I think xanorp's expectations of how the thread should have gone, and it being unacceptable to say anything other than to express proxy mourning and sorrow in reaction to the post to be unreasonable. This isn't Facebook; it's Metafilter. We talk about stuff and its implications-- even difficult stuff. I'm allowed to find pictures of a terminally ill, limp, oblivious child "throwing the first pitch" at a baseball game and then supposedly getting all hubba hubba about the catcher to be... odd. And I can do this and still feel compassion for the parents! It's nuance, you know? Considering different aspects of things, like the wider interaction of a blog with mainstream media. The parent's choosing to fundraise through public spectacle. And so on.

I can't help but think it is almost as bad to say something like that to members of our community who made perfectly civil remarks in a thread (who are here to see that judgment) as it would be to make harsh judgment on the subjects of that post (which, unless something was deleted in that thread, wasn't even done here) in a public forum that they may never read.

Bless, winna. Thanks.
posted by jokeefe at 9:54 AM on May 4, 2012 [8 favorites]

Also, this, from winna's comment:


I have very strong opinions about sentimentality versus sentiment, namely that anything which evokes emotional responses to guide decision-making or as a motivating force is usually something for which it's important to dispassionately assess what ends that emotion is being harnessed to further.

Yes, a thousand times over.
posted by jokeefe at 9:56 AM on May 4, 2012 [9 favorites]

" But a lot of people react to parents speaking in the voice of their voiceless children, and a lot of people have a visceral, physical reaction to it, as much as xarnop has a visceral, physical reaction to people calling it creepy."

rtha- genuinely in hopes of having understanding-- why does it seem like people think I'm the one who is doing something wrong because I won't understand why they aren't doing something wrong.

Are we both wrong, or neither wrong? It gets confusing because people say things as a form of self expression and then when I say that seems hurtful, the response is that my feelings are less valid because I need to realize their self expression is more important than my self expression and when I do it it's wrong and when they do it it's not wrong.

I genuinely don't understand what's up with this.
posted by xarnop at 10:01 AM on May 4, 2012

I'm allowed to find pictures of a terminally ill, limp, oblivious child "throwing the first pitch" at a baseball game and then supposedly getting all hubba hubba about the catcher to be... odd.

The thing that gets me about this is that you think her being ill, limp and/or oblivious is like...a reason why her parents shouldn't take her places or take pictures of her. Like they shouldn't do things with their kid because their kid isn't 100% healthy and normal and comfortable for people to see.

Anyway, you're allowed your viewpoint, I'm allowed mine etc. I agree with TPS that that particular aspect of the conversation is deadly dull.
posted by the young rope-rider at 10:10 AM on May 4, 2012

rtha- genuinely in hopes of having understanding-- why does it seem like people think I'm the one who is doing something wrong because I won't understand why they aren't doing something wrong.

Other people have said, "wow, when I read that website, it makes me feel bad." You have said "wow, when I read other people's comments about that website, it makes me feel bad, and therefore the comments themselves are bad, and therefore the people who made those comments are bad." There is a difference between those two statements.

(I'm using "bad" in the first sentence here as a stand-in for creepy and the other words people used in the original thread, and in the second sentence as a stand-in for hurtful, not empathetic, vicious, callous, abnormal, and the other words and phrases you used in this thread.)
posted by decathecting at 10:10 AM on May 4, 2012

xarnop: "Are we both wrong, or neither wrong? It gets confusing because people say things as a form of self expression and then when I say that seems hurtful, the response is that my feelings are less valid because I need to realize their self expression is more important than my self expression and when I do it it's wrong and when they do it it's not wrong. "

Why does someone have to be wrong?
posted by Rock Steady at 10:10 AM on May 4, 2012 [6 favorites]

... and then when I say that seems hurtful, the response is that my feelings are less valid because I need to realize their self expression is more important than my self expression and when I do it it's wrong and when they do it it's not wrong.

I think part of the problem is that you say "the response is" followed by something that no one has said.

I'm responding because, whenever there is a dispute, people in my family say stuff like what you are saying: "So, I'm not allowed to have my feelings?" Yes. Yes, you are absolutely allowed to have them. What you don't get to do is express yourself and not have people respond.
posted by BibiRose at 10:13 AM on May 4, 2012 [4 favorites]

The fact that you see it as someone having to be wrong rather than how people approach and are affected by certain topics and express that here is pretty problematic. At this point, you've either never considered or given up entirely avoiding posts and conversations that upset you in favor of attempting to have the conversation controlled so that you can be comfortable. You have already told us you go into these threads with open eyes and expectations of being offended/horrified/criticized by the viewpoint of others, so perhaps it's time you examine the need to insist that the site mold to you and validate your feelings rather than you taking the responsibility of engaging or not engaging in threads that you're already certain will end up causing you distress. In my experience, that's not how MeFi, the Internet, or for that matter social interactions in general should work.
posted by zombieflanders at 10:14 AM on May 4, 2012 [2 favorites]

Are we both wrong, or neither wrong?

I think you're neither wrong as far as having your own reactions to the blog. You find it unremarkable and positive as a way to present their reaction to their struggle? That's totally fine and valid. Someone else finds it creepy or disturbing or off? That's totally fine and valid. And it's fine for both of you to talk about your subjective response to it, and to like discuss in general the difference of opinion.

I feel like the issue was one where giving people a pretty seriously hard time for having a different subjective reaction to it was where the problem was. Not that you didn't like their reaction; you don't have to, any more than they have to like yours, and at the level of just saying "this is my reaction to that" as a one-off bit of an exchange in the context of the larger discussion that's fine. But you kept coming back to it in the thread in a way that felt like you were basically not going to permit people to state what you saw as an incorrect reaction to the whole thing, and that's where I think basically all of the heat came from.

I think it's more of a state your take and let it drop sort of thing; at that level it wouldn't be an issue. It's that the thread was repeatedly taken back to that that was most of the problem.
posted by cortex (staff) at 10:16 AM on May 4, 2012 [3 favorites]

xarnop: I don't think you're "doing something wrong."

This is exactly what I was talking about.

I think the way you engage in threads like this sometimes is unhelpful - to the other people in the thread, and to yourself. I am not, and have not, compared your behavior to anyone else's.

I think you misread what someone says, then paraphrase it in a way that may feel emotionally true to you but leaves the other person feeling misrepresented, misunderstood, and perhaps defensive.

Which is exactly how you handled what I said to you. I think this is problematic.
posted by rtha at 10:17 AM on May 4, 2012 [6 favorites]

My first Meta callout!

You never forget your first time. Unfortunately.
posted by Trurl at 10:19 AM on May 4, 2012

The thing that gets me about this is that you think her being ill, limp and/or oblivious is like...a reason why her parents shouldn't take her places or take pictures of her. Like they shouldn't do things with their kid because their kid isn't 100% healthy and normal and comfortable for people to see.

No, that is not what I meant at all. Not at all. Feel free to look at the pictures I'm referring to, which were not taken during an everyday outing but during a fundraising event. I'm not happy with the implication that I simply don't like the idea of disabled children being "allowed" in public. Nothing could be farther from the truth.
posted by jokeefe at 10:23 AM on May 4, 2012 [2 favorites]

Eyebrows McGee: " This posting as the child was absolutely horrifying. And I'm not exactly sure why. But it literally made me nauseated -- not with disgust, but I think with sort-of fear and pain. I mean, babies don't have a whole lot of agency, I know, but somehow it seemed to turn the baby into an object? A blank slate on which the parents projected what THEY were going through and ignored what the baby was going through. Like they were trivializing the person at the center of the situation in order to put themselves in the center? Or, since I know they were keenly aware of what the baby was going through, and their entire lives were centered around that baby at that moment, maybe it was so hard because I knew they were sublimating the fear and horror they felt about their child's pain and struggle by projecting this sort-of Disney-movie internal monologue onto the baby?"

It's a coping mechanism. And as Miko said, people cope with grief (and I'll add: fear and trauma, especially to their child) in different ways. Worth noting that people also react to grief and illness in others in a wide range of ways. We've seen a bit of that here, in both threads.

A friend of mind did exactly this with her facebook status updates when her infant was dying. Others I know didn't. I haven't asked her why. But I suspect that it was simply therapeutic for her. Plus I know that she believed her friends seemed more likely to offer support and kindness when she gave her child a voice, than when she posted as herself. Maybe she thought they'd be able to better relate. Or it helped her do so.

Having a child in a hospital can be awful. They're so tiny and helpless and there's simply nothing you can do but have faith that the doctors will be able to help, or that they'll somehow get better on their own. When my son has been in the hospital, I've found it quite frightening and frustrating. Several friends have said they felt their baby wasn't necessarily being treated like a person in a NICU -- more like a patient to be treated. They may not have been able to hold their children, or if they were the babies would have been connected to monitor cables and tubes.

I can see why someone would choose to speak for their baby. I can also see why others might find it disturbing. But I don't think anyone should be condemned on either side. People cope in many ways.
posted by zarq at 10:27 AM on May 4, 2012 [3 favorites]

'The thing that gets me about this is that you think her being ill, limp and/or oblivious is like...a reason why her parents shouldn't take her places or take pictures of her. Like they shouldn't do things with their kid because their kid isn't 100% healthy and normal and comfortable for people to see.
posted by the young rope-rider at 10:10 AM on May 4 [+] [!]'


It has nothing to do with how they are, rather with who they are. They are minors. How does the concept of privacy apply to this? Offline we apply all sorts of restrictions on kids whereas online kids get to have homepages, social media sites etc. from age 0. And in this sort of blogs small kids are essentially utilized to whose advantage?
This is mho.
posted by travelwithcats at 10:30 AM on May 4, 2012 [1 favorite]

rtha- you're assuming my perspective is wrong. Just because I have been through a crapload of trauma and have a very different perspective doesn't inherently mean how I see others words as impacting those who are in terrible suffering inherently wrong.

I'm just looking at the impact of those words through a different lense. I have made many mistakes and others make mistakes and I think it's totally ok to make mistakes. In fact, I even think it's ok to not be able to change. But I want people to know how their actions affect others so that IF they can make change, they can take that opportunity.

And I too, do not want to cause others suffering. If I am an annoying gnat I can live with that, but if anyone is ever deeply harmed by my words I would hope they would let me know, and I could explain, work through, apologize for anything I may do/think/be that causes this for them. I can't always change who I am or how I cope, nor can others always change who they are or how they cope--- but I have to believe somewhere the ability to feel compassion is stronger than that.
posted by xarnop at 10:45 AM on May 4, 2012

rtha- you're assuming my perspective is wrong.

No, he's not.
posted by decathecting at 10:55 AM on May 4, 2012 [1 favorite]

She.
posted by zarq at 10:57 AM on May 4, 2012

"I think you misread what someone says"

Sorry, assuming my misreading is wrong. And the feelings related to it are wrong. My paraphrasing seems to be the problem possibly and not necessarily the feelings or perspective that follow?
posted by xarnop at 10:59 AM on May 4, 2012

So let me rephrase using exact wording.

You stated that I "misread what someone says" and I'm not sure that is always true. I may just have a problem with paraphrasing badly. That is helpful to know, but may be a different problem than a misreading problem. I am in fact, happy to work on that as best I can.
posted by xarnop at 11:01 AM on May 4, 2012

rtha- you're assuming my perspective is wrong.

No, I'm really not. I think it's probably totally right. For you.

Again, what I find problematic is that you tend you recast what someone else has said in ways that are inaccurate. This is pretty clear because the people you paraphrase come back and say "That is not what I said."

You totally get to say "A + B = cats."

Another person can express their belief that A + B = flowers. You do not get to say "You said A + Q = supernova, and this really hurts my feelings!"

On preview: I may just have a problem with paraphrasing badly. This.
posted by rtha at 11:04 AM on May 4, 2012 [10 favorites]

If I understand your question (it's a bit verbose), what you're describing is not endemic to MetaFilter. It's a consideration everywhere people have discussions—across the Internet, in newspaper columns, in coffee shops. "What are the ethics of saying that [xxxxx] creeps you out, when [xxxxx-person] might be standing right behind you and could overhear?"

Perhaps it's a bit of a stretch, but how different is this than me (an artist) overhearing someone talk about how awful my work is, or worse yet, telling me to my face not realizing that I'm the artist he's talking about. Both have happened to me. Both forced me either A. contest the opinions being offered and create a "situation" or B. suck it up and be glad I was lucky enough to get such an unvarnished response to my work. I chose B in both instances which also meant stoically accepting that I maybe had a long way to go toward becoming the artist I wanted to be. Both choices, I think, made me not just a better artist in the long run, but also a stronger person.

All of this reminds me of a Carl Jung quote. I can't remember how it begins but it ends with "... as ruthless as truth and nature." Which are the two things we can never really be protected from, even with all the empathy in the world.
posted by philip-random at 11:07 AM on May 4, 2012 [1 favorite]

I am sincerely sorry for introducing Avery to this community

But you didn't. You introduced the blog. People reacted negatively to a blog.
posted by heyho at 11:34 AM on May 4, 2012 [11 favorites]

xarnop, you are not wrong, tzikeh and jokeefe are not wrong, and the parents of the poor child who just died from Spinal Muscular Atrophy are also not wrong.

I would say the only thing that is wrong, if we have to judge, is the fact that prenatal genetic screening for SMA is not routine, when children die from it, we have screening for it, and doctors say that screening ought to be done.

xarnop, I think it might be easier for you if you look at the comments in that thread in a different way. In my opinion, when people say the parents are "creepy", what they mean is, "my boundaries are completely different than these parents' boundaries, and so I find the way they are handling this terrible situation personally disturbing".

Which, you know, is actually very similar to your reaction to the critical comments. They crossed your own boundaries for what you consider acceptable behavior when a child has died and the parents are grieving, and so you found them very disturbing and hurtful.

And that's totally okay, and perfectly understandable, btw. I know it is very hard for me, as a mother, to even contemplate losing a child. It's heart-breaking just to imagine that happening! But, also as a mother, and as someone who in addition had a "mommy blog," I personally found the parents' approach disturbing, too.

When my kids were little, I did what zizzle does, imagining what they would say if they were old enough to talk. I'd share anecdotes with my closest friends, also parents, and we'd talk about what our kids did, etc.

But on my blog, I felt uncomfortable even referring to my own kids by their real names. Actually putting words in their mouths, thoughts in their heads, and then putting those out into the public as if it were my kids writing them feels like crossing a boundary to me, for two major reasons (and lots of smaller ones, but these are the main reasons):

First, they are their own people. My kids are not my puppets, you know? I don't feel like I should put words in their mouths. It feels like i am staging things, pretending they are behaving in a way I want them to behave.

And second, as a parent the idea of child abusers seeking out kids is disturbing to me. I don't think everyone on the internet is an abuser, so I am okay with having a mommy blog. But putting stuff out there on the blog as if I were a child doing it feels wrong, like it is appealing to the kind of people who prey on kids so they will read the blog. That's the last thing I want to do.

So I wouldn't go there, and I might even say I am "creeped out" when other parents do.

But that doesn't make those parents wrong!

Apparently, a lot of other parents, like you, think what these parents are doing is just fine.

You also feel that the people who don't like the way the parents are handling this ought not to say anything negative, because it is disrespectful of their suffering. Is that right?

That's a valid feeling for you to have, born of compassion, and I respect that.

But I think it is instructive to other people to hear these criticisms of that blog, not because I want to be cruel or hurtful to those parents, but because I think maybe the parents, who are devastated by grief, may not have considered how their approach is keeping some people away, or attracting people they may not want to attract, to their blog. They may not realize how they appear to others by taking this approach.

Your example, about the hairy arms, was obviously hypothetical. But while as it might be hurtful to say to someone, "Hey, you have hairy arms!" or to gossip to others about the person's hairy arms, it could be helpful, if that person is trying to raise awareness about hairy arms, to say, "Hey, if you are going to do this, you might not want to do it from the perspective of talking arm hair, because that kinda creeps me out, and so I am less likely to tell others about your hairy arm blog."
posted by misha at 11:47 AM on May 4, 2012 [7 favorites]

"Hey, if you are going to do this, you might not want to do it from the perspective of talking arm hair,

This makes me snort with laughter. I'm going to take some time today to anthropomorphize my arm hair, just for my own amusement.
posted by rtha at 12:05 PM on May 4, 2012 [3 favorites]

Glurge (I can't think of a better or more direct way to describe it at the moment) is popular - so popular that it's why forwarded emails, you know the type I mean, go viral. Many people don't see a problem with this layer of sentimentality on something more profound (and I think many other people expect this is how they should act about these things, therefore they do).

I'm unlikely to start a conversation on Facebook about what's problematic with "liking" a picture of a little boy in camo saluting his soldier father's grave with a US flag in his hand with the people who are busy "liking" it because probably it just will make everyone feel bad - them at my criticism, "cruelty" and "coldness", me at their unwillingness to accommodate nuance, to think about the manipulation inherent in that sort of thing, to understand that I can feel sad (maybe for different reasons) but I can also feel other emotions, and that analysis is not automatically mean or coldhearted.

But I might very well have that conversation here on MeFi, because it's a degree removed, and I expect a higher level of discussion to be accommodated - one in which even if you disagree, you can be civil, not attacking; you can explore nuance; you can be exposed to other points of view in a way that isn't an us-vs.-them.

I assumed the reason the blog in the FPP was making the rounds is because it was very similar to the sort of thing that gets "like this if you agree!" on Facebook. Now, I sort of think that's smart of them that they found an angle that was touching to so many people because their intent to spread awareness about SMA succeeded in a big way. So I don't really think too much about it because that kind of thing is everywhere. But what bothers me is to see people who are being sincere and nuanced in expressing their thoughts and reactions basically yelled down that they're not being respectful to discuss those. I don't see it as hurtful to be carefully critical.

I agree that my ideal MeFi involves people being thoughtful of what they're saying because I think that's just a good way to approach life in general - but it's also good for allowing these nuanced conversations to happen. If every discussion was only one side allowed to talk, or even only two sides pitted against each other, there's very little to learn. I come to MeFi because these conversations can happen here more so than most places online.
posted by flex at 12:22 PM on May 4, 2012 [21 favorites]

I'd just like to note that this:

b) there are a lot of people who haven't heard of Spinal Muscular Atrophy
c) there are probably a lot of people on Metafilter who are carriers of Spinal Musclar Atrophy and don't know it even though it is the number one genetic killer of infants and toddlers. It kills more kids than Cystic Fibrosis, even though the number of people who are carriers is roughly the same

as a framing post, with supporting links to information about SMA as well as links to blogs and other resources (and with a "recently in the news" addendum about the Avery blog) would have actually made a good post for Mefi, and would largely have accomplished the aim of making people more aware of the condition and the need for testing.
posted by jokeefe at 12:46 PM on May 4, 2012 [4 favorites]

"Like" on Facebook is similar to "Favorites" on Metafilter, but different.

"Liking" something on FB doesn't mean you like it, just as favoriting things on Metafilter doesn't necessarily mean it's a favorite.

But what "Liking" on FB does, as opposed to Metafilter, is keep you in the loop on that conversation by giving you direct updates, and it also automatically shares what you "liked" with the people in your network so it can bring visibility to a topic, a picture, a link, etc.

I doubt anyone really "liked" Avery's story, but "liking" Avery's story brought visibility to it by sharing it with the networks of everyone who "liked it," some of whom "liked it" in return and so the story was shared with their networks, etc.
posted by zizzle at 12:47 PM on May 4, 2012 [2 favorites]

The thing that gets me about this is that you think her being ill, limp and/or oblivious is like...a reason why her parents shouldn't take her places or take pictures of her. Like they shouldn't do things with their kid because their kid isn't 100% healthy and normal and comfortable for people to see.

This is something that came up once or twice in the thread. It's a huge leap from 'There's something odd about acting like the baby threw out the first pitch.' to 'Disabled people shouldn't be seen in public.' Why? A baby in optimum health can't throw a baseball. I'd find that particular post really bizarre and, yes, a bit creepy regardless of the kid's health. Parent holding the kid while throwing the ball? Cute. Pretending the kid's doing it? A bit weird.

Is there a discussion to be had about the comments and attitudes towards disability? Maybe. Some of the comments along those lines probably did unnecessarily focus on Avery's physical condition. (I'm not going to go back and double check.) But the sentiment we've been arguing about is independent of it, I think.

Cue everyone jumping in saying there are pictures of them as babies where their parents posed them doing random shit.
posted by hoyland at 1:15 PM on May 4, 2012 [1 favorite]

I often wonder why I keep reading Metafilter threads, when most of the time I come away feeling appalled and depressed about the human race. I've decided that MeFi threads are like Hanon piano exercises for people struggling to obey Christ's commandment to "love your neighbor as yourself."
posted by El Sabor Asiatico at 1:19 PM on May 4, 2012

...you think her being ill, limp and/or oblivious is like...a reason why her parents shouldn't take her places or take pictures of her.

This doesn't follow at all. Saying "this particular way of framing your ill child's experience is tacky or feels exploitive" is very different from saying "your child is unfit to be seen".

I think everybody here agrees that:

1. The disease is terrible, and it's terrible that she had this disease and died from it.
2. What the parents are going through is terrible and it's understandable that they would cope in strange ways.
3. If we were talking to the parents, or commenting on their blog, we wouldn't say critical things about their blog (even if we secretly thought critically of it) because it would be horribly insensitive.

People are disagreeing over whether:
4. The rhetorical approach of the blog is a bit tacky, or creepy, or distasteful, etc.
5. We should be free to say it's a bit tacky (etc) on Metafilter, a place where as far as we know the parents are unlikely to see those comments.
6. Even if 4 is true, it's a bit tacky to condemn the parents for this basically harmless coping mechanism.
posted by LobsterMitten at 1:36 PM on May 4, 2012 [3 favorites]

Another thing to keep in mind whenever you feel like "the Metafilter community" is acting in a certain way (good or bad) is that it's usually just a handful of individuals who are making the comments that you're noticing. I absolutely know the temptation to think of it as "these few individuals represent a larger group", but I find it useful to check my own reactions by noting the number of people who have actually commented on the issue, and remembering that many people who don't feel strongly, or who want to avoid threads on a certain topic, have simply chosen to skip that thread or are choosing not to be drawn in, and those people are part of the Metafilter community too.
posted by LobsterMitten at 1:43 PM on May 4, 2012 [1 favorite]

So this is a super tender area for me, because I remember the thread on the Gray about how terrible and soulless all of us were who disliked the story about the cab driver who gave the lady a free ride to the hospice (which I saw as a self-congratulatory fake story based on its tone and details).

Some people really savaged me for, I guess, what they saw as my not caring about dying people because I didn't like the tone of someone's Internet Zorro story about how he was the hero of a random dying lady, at a time when I was volunteering several hours a week at an actual hospice (which experience was part of why the story didn't ring true to me).

Like winna, I think that obligatory sentimentality blocks the channels where true sentiment and human connection can flourish. I don't think it's cruel to Avery's parents to say that some of the choices they made in presenting her story make some of us uncomfortable (I actually haven't been over to the thread here, but I have been following the blog and I am terribly sorry for their loss and appreciate their commitment to publicizing SMA and its risks). I made a donation to Fight SMA in her memory, because I honor her life and her parents' loss. However, I don't think that means Avery's parents' communications strategies and choices are above critique.
posted by Sidhedevil at 1:48 PM on May 4, 2012 [15 favorites]

I don't think I'm projecting. I'm not sure how else to read that last paragraph except as a (not so) coded condemnation for those who did not react with pure grief to the posting. All of the apologizing to the parents begs the question of whether or not there is anything to apologize for.

I thought from the context of her earlier paragraphs that zizzle was just saying that it hadn't occurred to her that other people might have the "creeped out" reaction to the parents talking for the baby that they did (which they are allowed to do but was unexpected to her), and that she was therefore sorry for posting the blog here because that reaction and the subsequent comment fight etc. might get back to the grieving parents. I read that as thoughtful, not condescending.

On preview: I guess this would be a rare case of me disagreeing with LobsterMitten, to the extent that she says "as far as we know the parents are unlikely to see those comments." In general if the subject of the post is alive, I now assume that they are fairly likely to see what we write about them in the thread. (Perhaps in this particular case it is less likely due to their grief and particularly wide blog exposure.)

Finally, xarnop, I just wanted to say I appreciated you sticking your neck out and expressing your point of view here, because I know it is difficult to stay positive in MetaTalk when everyone disagrees with you, and I think you have handled yourself really well here. And I'm totally with you on winning the world through love and brotherhood philosophy (see, I don't paraphrase stuff well, either!!!). Carry on!
posted by onlyconnect at 1:50 PM on May 4, 2012 [1 favorite]

6. Even if 4 is true, it's a bit tacky to condemn the parents for this basically harmless coping mechanism.

I think the thing is that 4 does not necessarily entail condemning the parents.

This might be a really bad analogy, but it came up in my life today. I hate the game Mafia and find it quite upsetting. I am the only person I know who feels this way. I would prefer it if my friends chose some other party game to play. I'd maybe even argue that Mafia's kind of a problematic game, as it encourages us to take pleasure in persecuting others. (Or something.) But I'm not saying they're bad people for wanting to play Mafia. It's just something I'm going to have to sit out.

Tangent: I might even have to applaud the idea of using it as a department-wide activity, as it's a game that exists (or has a close analogue) in most of the countries people in the department come from, so there's a level playing field culturally.
posted by hoyland at 1:50 PM on May 4, 2012

Also, to me, "someone who hasn't harmed you" isn't the right standard. Again, with all respect to Avery's parents, nothing they do can "harm me," but the choices they made in presenting their daughter's story can become part of the public dialogue about how we talk about helping children with life-limiting genetic illness, how we raise money for research and advocacy initiatives, and how people living in the overwhelmingly difficult situation of parenting a child with a genetic illness as severe as SMA choose to engage in public advocacy.

The bottom line for me is that I have immense sympathy for their grief, and I'm not going to criticize them for doing whatever makes them feel better about it, whether it's the way they chose to construct the "Avery's Bucket List" blog. But I do feel I can step back and take a more Kantian view of their choices and say "If many other parents of children with SMA chose this particular style of communication about their child's illness, would that be productive or counter-productive? Are there ways we as a society construct the narrative of childhood illness that are rooted more in cultural patterns of sentimentality rather than in the lived experience of the children and their parents and other caregivers?" etc., and that doesn't make me (or anyone else) inhuman or uncaring or unempathetic.
posted by Sidhedevil at 1:54 PM on May 4, 2012 [5 favorites]

First sentence should have concluded "...or any other coping strategy that they find helpful."
posted by Sidhedevil at 1:55 PM on May 4, 2012

I am thinking I will take a break from metafilter--- not because i don't like metafilter, as I very much do, but I think it might not be the best space for me right now. I really really want to thank you, the mod team, and general community for having me and cultivating this space and I know I've probably presented a number of puzzling to mod situations here. I really appreciate that the space has a fairly low moderation policy, while I think still encouraging respectful and compassionate behavior. (Sort of? Going to re-evaluate what I am hoping for, seeing with regard to this in relation to metafilter)

In any case, I don't want to make a dramatic exit, but because it has been meaningful to me to have a space to communicate I was wondering if I could post something on my profile that says the mods have my e-mail and give it to you guys?

By the way, there isn't anything I think you guys could or should do better, I like the low mod, nature and the way that allows discussion. I just quite literally physically don't think I can handle the nature of some people free form thoughts right now and need a break for my healths sake. I am just devastated that I can't explain to people what that kind of grief does to people and I feel like I really can't bear that people don't understand. This is not unique to metafilter but the human race= and I'm not sure how to fix it because at the same time I don't really want anyone to understand traumatic grief because it's horrible, so in a sense it's really nice that many don't understand, immediately, why the parents response is perfectly natural in relation to how horrible their situation is.

I do think maybe in the future I will be in a place where I might be able to participate more productively at metafilter, with a different expectation of the site. I don't think I'm there right now. Right now I desperately crave human understanding for the level of traumatic grief I have been through. And I recognize providing this, is not the purpose of metafilter, which will make my participation here ultimately misery inducing for everyone.

Outside of grief communities, there is really no where to go. And grief communities are hard, because it's not like we can necessarily handle listenting to fifty peoples traumatic grief any better than one person could listen to our grief. I don't know if that make sense. Support groups are painful- so in that sense I understand why humans would want to avoid me while I'm in pain. I can't handle others pain at many times, and I understand. But to leave us so isolated and then critique how we cope "weirdly" with that level of trauma and isolation, I still can't help feeling it's cruel. If you want us to cope better, then listen to the sorrow. Be with us. Open your doors to hear the wailing and the screaming and the suffering. If you don't want to see it, hear it; that's ok. But don't critique us as if we are the same as you. Everyone's behavior gets weird when they are in excruciating pain.

I guess because my experience of metafilter is not one of people holding out their hand to hold mine while I scream in agony, but one of people who will critique my actions and behavior as I scream it-- I just-- I do. I find this cold. But perhaps many doing this critiquing are very supporting of people in traumatic grief and the statement they are in actuality empathetic is true. It doesn't feel true to me, because there is no empathy that I can actually see. It's hard for me to believe. But I hope that is explainable by something I don't understand because I'm in too much pain to think clearly. I wish you all a lot of love, and I'm sorry for any miscommunication/misunderstanding or anything I may have done that has hurt or confused anyone. I don't want anyone to feel harmed.

And I do still share the value that it's better to get thoughts out than keep them in, so... that just leaves me feeling like this is just not a good space for me right now. And though I haven't really made any friends here I will definately miss you guys as if you were my friends because I don't really have very many. : ) Take care.

I actually agree with you Sidhevil, and I think it's important to talk about choices and behaviors even in sensitive situations especially for the sake of ensuring we're handling these situations as best we can as a society and general community.

This is also why I DO try to participate in these kinds of conversations even though they are hard for me. There can be blindspots in how people in traumatic grief frame their decisions but there can also be blindspots in how the general community understands those behaviors/decisions because they really don't understand. So I think input from everyone is helpful. I guess for me, my general purpose in having these discussions is so that we as a society (world) can create better understanding of many subjects and human experiences so that we can do a better job of creating a humane, supportive, meaningful world with as little suffering as possible. I recognize some people are just offering critiques for fun, or sharing random thoughts because it's a thing to do, and metafilter doesn't have any explicit purpose in creating a better world or alleviating human suffering. Which is why I need to re-evaluate why or if I shoudl be participating right now.

Anyway. Thanks to everyone who took the time to read my words and try to understand if they didn't make sense. And I apologize sincerely for anyone who may have felt hurt by the ways I comprehend or try to respond in conversations.
posted by xarnop at 2:07 PM on May 4, 2012 [8 favorites]

xarnop, I really applaud you for doing what feels right for you right now, even though we will miss you while you're gone. I've taken breaks from here both for external reasons and because I was getting too emotionally involved (my rule is that if I lose sleep because I am upset about an interaction here, that's a good sign I need a break).

I appreciate your candor in being so frank about your own emotions and your own reactions here. All the very best to you.
posted by Sidhedevil at 2:11 PM on May 4, 2012

In any case, I don't want to make a dramatic exit, but because it has been meaningful to me to have a space to communicate I was wondering if I could post something on my profile that says the mods have my e-mail and give it to you guys?

Totally fine to leave a note on your profile. If you want to leave a forwarding address, it'd be much, much better for you to just list an email address on the profile page (even a throwaway address that you only use for that purpose) than to put us in a gatekeeper position of distributing your email address to interested parties.

Note that if you mean take a break as in just not log in / visit for a while, the above will work fine. If you mean take a break as in actually close your account formally for the time being, profile pages are mostly blanked out on closed accounts so leaving a note doesn't work that way.
posted by cortex (staff) at 2:12 PM on May 4, 2012

Good luck to you, Xarnop. I hope you find what you need.
posted by cribcage at 2:15 PM on May 4, 2012 [1 favorite]

No I don't want to close it, I went to that window and started crying a lot. So anyway, I will just lay low for a bit.
posted by xarnop at 2:16 PM on May 4, 2012 [1 favorite]

Gotta say, as a parent (full disclosure, not credentials) who is plenty critical and judgmental about Things People Write on the Internet, I am recoiling in hottor after reading tzikeh's perfectly entitled opinion as expressed. That's the creepiest sociopathic shit I've read in a minute, to appropriate some vernacular. Jesus. I am an atheist but that's how I'm putting it. Jesus.
posted by aydeejones at 2:17 PM on May 4, 2012

xarnop, I really applaud you for doing what feels right for you right now

Yes. It can be hard to protect yourself by definitively stepping away, but it's such a smart self-preservation move and I'm glad you are feeling up to it. I hope you are able to find people to connect with in your own area who can be there for you.
posted by LobsterMitten at 2:18 PM on May 4, 2012 [1 favorite]

I am just devastated that I can't explain to people what that kind of grief does to people

You've done this over and over. It's not an inability to understand, it's disagreement. There is a significant difference, and by saying this, you show that you have made no effort to comprehend what people are trying to explain to you.
posted by agregoli at 2:24 PM on May 4, 2012 [1 favorite]

Ack, hit post. I'm sorry you are hurting. I hope that your break is good for you and that you feel safer in conversation in the future.
posted by agregoli at 2:25 PM on May 4, 2012

That's the creepiest sociopathic shit I've read in a minute

Now why on earth would someone read this whole thread and conclude a little more name-calling and accusation of bad faith is exactly what's needed right now?

Especially when the specific accusatiois absolutely foundless?

Honestly, anyone who thinks that any critical view of this kind of thing is "sociopathic" has little understanding of what a "sociopath" actually is and is using the word ignorantly. It's quite insulting, really, to equate a legitimate criticism based on feelings with the inability to make any human connection at all and to tolerate cruelty because of that.
posted by Miko at 2:48 PM on May 4, 2012 [18 favorites]

Good Luck xarnop. I admire your openness, and your wisdom in deciding to remove yourself (temporarily) from this situation that's causing you such pain.

(And, as the Note at the bottom reminds us, have a *hug*.)
posted by benito.strauss at 3:29 PM on May 4, 2012 [1 favorite]

I guess because my experience of metafilter is not one of people holding out their hand to hold mine while I scream in agony, but one of people who will critique my actions and behavior as I scream it-- I just-- I do. I find this cold. But perhaps many doing this critiquing are very supporting of people in traumatic grief and the statement they are in actuality empathetic is true.

So this wasn't about baby Avery and her parents at all, really, but about your grief and your feelings of pain. Which makes sense, and I understand. Best wishes, xarnop.
posted by jokeefe at 4:36 PM on May 4, 2012 [5 favorites]

May I just respectfully remind you, xarnop, if you are still reading, that so many of us here on Metafilter have experienced profound loss, illness, trauma, tragedy, grief, pain, terror, abandonment, isolation, torture and loneliness. You have not cornered the market on experience or insight or understanding of those things. You just process it your way, and others process it theirs. It doesn't make them (us!) cold or bad. We are all in this together, really. I too send best wishes.
posted by thinkpiece at 4:46 PM on May 4, 2012 [16 favorites]

Bummer to lose a member - albeit temporarily - over this, but it sounds like it's the right decision for you Xarnop. Good luck to you, buddy.

I posted a comment in that thread - a strident comment, no less - and I kinda wish I could take it back now. I still believe largely in what I said, but I think my emotions were clouding the meaning and made the comment far more prickly and confrontational than it should have been.

Though this MeTa is most definitely not all about me and my feelings, I guess I'll attempt to elucidate why I posted what I did in hopes of reaching mutual understanding, much as other people with different reactions have done so.

First context is that I'm a new parent, of a six month old girl. This shaped my reaction to the post in that even contemplating something like this happening to her sends a shard of ice into my heart that simply wouldn't have been there a year ago. Since having a baby, I am more emotional in general - apt to tear up a lot more than previously! - and I especially find things about children being hurt or dying, especially when written from the parents' pov, much for effecting than before.

The other thing that happened, along with getting a new baby, is that my partner was diagnosed with post-natal depression, and so - difficult as having a new baby is already - it was even more difficult for us as my partner struggled to extract herself from a black pit of despair and especially anxiety that was unlike anything that she had ever experienced. In some respects, I felt like the depression meant that the usual stressors of dealing with a new baby were magnified and intensified for us.

I'm mentioning this because one of the big changes was anxiety levels. Prior to entering this strange otherworld of parenthood - even though I was a childcare worker for five years - I was largely unaware of how anxious being a parent can make you at times. And, for us at least, a big part of this anxiety comes from a combination of your own ignorance and the perceived judgment of others.

Both of us, my partner especially but I was by no means immune, felt - and often felt rightly - that we were being judged by just about everyone we met. Judged as parents and also as people, judged by friends, family and strangers alike. And I would have loved this to have merely in our heads - that would have been hard enough. However, it wasn't in our heads; I know this because an astonishingly large number of people had no problems expressing their judgment - in varying degrees of frankness and harshness - directly to us. I'm sure every new parent finds this difficult, but when you're dealing with post-natal depression it is simply abominable. Seeing my partner - the "strong" one in our relationship reduced to rubble by the casual censure of people who were meant to be supporting us at a difficult time, and strangers who just had no fucking idea, was very hard. And it reduced me, too, when they expressed it to me.

The result of this is that when you are with your baby in public or around others, you start producing this shadow play about what people are thinking and saying in their heads about you, and let me tell you it's not very positive. And this shadow play becomes even darker as more people express judgment to you and confirm your negative dialogue in your head. I had no idea that shame would be such a dominant emotion for me and my partner in the first few months of my child's life. Shame, and guilt. And I'm sure every new parent experiences the same to a greater or lesser degree.

This was just one facet of the post-natal depression experience, but I bring it up because that post pressed two buttons in me: 1) It was about a baby in a harmful and life-threatening position, and 2) when I saw mefites start to deconstruct it in the same way that we deconstruct posts about, say, lounge furniture in New York apartments, or someone's blog about paper planes, it felt insensitive to me, and - yes - it felt judgmental, and it started bringing up a lot of those feelings in me that are on a day-to-day basis thankfully becoming rarer. It extended the script of that shadow-play and made me feel that people are able, willing and very casual about expressing that kind of judgment. I felt like we were deploying the typical metafilter discourse about something, and I wanted to shout out, "No! This is not typical! This is not an appropriate discourse for this subject! It needs to be approached differently! With more tact, respect, and an excess of generosity!"

When I complained about the insensitivity of Tzikeh and Jokeefe to Avery's parents, what I was really upset about what their insensitivity to me, and to parents like me. And I should have said so instead of my summary dismissal.

Of course, when looked at that way, it's ridiculous; how are they - or anyone - supposed to know what's happened inside us over the last six months and what those kind of reactions mean? And, even if they did know, why should the be expected to temper their responses toward my irrational and largely unjustified emotional needs?

They couldn't know, really. And I don't know if anyone who hasn't experienced that level of anxiety could know or understand - which is why I now regret my comment. It wasn't helpful, and I would be very surprised if it helped anyone understand about the anxieties, fears, and struggles that new parents can grapple with. Moreover, I don't think it made that case the mefites should make any special accommodation to parents on account of that - like we do for, say, posts about touchy feminist or religious subjects. And I don't even know if such a case could even really be made.

So I offer Tzikeh and Jokeefe my apologies. My reaction was more about me, clearly, than about you - as Xarnop's may well have been. Perhaps, as a fellow community member - perhaps as a friend? - I could ask for some more sensitivity around these topics. You have every right to ignore the request, of course, just as you had every right to voice your opinion about that post and those parents in whatever language and tone you wanted to. You don't have to do anything because feelings may be hurt, but it would be helpful to me and at least a few others, I think. Either way, thank you for keeping this dialogue largely respectful.
posted by smoke at 4:51 PM on May 4, 2012 [12 favorites]

Oh, smoke, not to worry, we're good. I'm a parent too, though it's been a long time since I moved from that utter and necessary absorption in a new baby to working on a friendship with my son who is now an adult. But I remember, very much so. I've been there. And, yeah, this: "deconstruct it in the same way that we deconstruct posts about, say, lounge furniture in New York apartments, or someone's blog about paper planes": fair enough. Just another thought: parents need to be told more often that they're doing just fine, you know? I could sure have used that back in the day. So let me tell you right now that you are doing just fine. You love your baby. You're staying the course. That's what matters. Hang in there.
posted by jokeefe at 5:05 PM on May 4, 2012 [6 favorites]

Just want to point out that several people who were less than complimentary of the blog, me included, are parents.
posted by gaspode at 5:35 PM on May 4, 2012 [3 favorites]

The thing that gets me about this is that you think her being ill, limp and/or oblivious is like...a reason why her parents shouldn't take her places or take pictures of her. Like they shouldn't do things with their kid because their kid isn't 100% healthy and normal and comfortable for people to see.

I dunno, rope-rider. Have you ever seen someone post a photo of their (perfectly healthy) female infant who is pretty much just lying there, innocently and obliviously, and talk about what a "diva" she is being in the photo? Or dress their oblivious baby in a shirt that says "Boy Crazy Bombshell" or something? People make negative comments about those all the time.

So I think people are just feeling weird about adult sentiments that clearly don't belong to the child at all, being projected onto the child. Sometimes it seems like the parents are taking away the child's dignity. So I don't think this is at all limited to disabled children.

To be perfectly honest I don't think it is about othering disabled children, I think often people are imagining themselves in the child's position, and feeling empathy for the child. In the case of the healthy infants, I think the people who react negatively to that are thinking about whether the child is being kind of cast in an artificial, not entirely positive role by the parents. In the case of Avery, I think some people may be thinking, "If I were ill, would I want photos of me up in public like this? Would I want my mom posting them on the internet joking about how I was thinking flirty things, in the photo of me?"

Personally I just feel awful for them and I think if that is their way of coping then that's what it is. But I also think I understand the negative reactions as well and I don't think they are coming from any bad place.
posted by cairdeas at 5:59 PM on May 4, 2012 [4 favorites]

Best of all to you, xarnop. Take care of yourself. FWIW, I think your desire for people around you (even virtually) to show a little more grace is a fine one, and over time, you'll harden to some degree, like the rest of us, and start expecting more and more people to resist showing that grace. Not sure whether that's "right" or "wrong," just that it is.
posted by Joseph Gurl at 6:19 PM on May 4, 2012

smoke, big hugs to you and your partner. Post-Partum Depression is tough on a new family. I hope you all got the help you need. I found my way through--it does get better.

New parents in general are already just riddled with anxiety; I know I sure was! You're constantly wondering if you're doing the right thing for your child (and you never really get over that part), and thinking people are criticizing you silently whatever you do.

And not always silently, either.

My son had to wear a brace for hip dysplasia, a result of his frank breech presentation at birth (he was presenting feet first, with both legs stretched out straight, ankles crossed), for most of the first year of his life. The brace looked like a little parachutist's gear, and helped to hold his hips in position so the ball and socket would fuse properly.

I hated that brace. I hated that my son had to wear it. But I knew it was best for him, so I learned to diaper around straps, buckles and velcro, and tried to project a cheerful, everything-is-just-fine demeanor whenever I could because, as far as my little boy knew, every baby wore a hip brace like his, right?

Like many Moms, I would talk to my son as we ran errands, rode in the car together, etc., keeping him engaged, helping him learn vocabulary, and just generally soothing him with the sound of my voice. One day, we're out and about and end up at the baby clothes store, and of course he is in his little brace.

And some elderly man, a complete stranger, comes up to us, looks at my little baby boy as I am smiling and talking nonsense with him and says, completely out of the blue, "DID YOU HIT THAT CHILD?!"

I guess he thought the brace was bandages? That his legs were broken? I don't know. I get upset just remembering it all.

At first I was just completely shell-shocked. Then I felt everyone must be looking at us, thinking I was a horrible parent who hit my child--normal new-parent reactions!

And then I just got MAD.

"Did you hear that silly man?" I said to my son, smiling all the while, "Why would he say something so silly and ignorant and just plain wrong? That's called being rude! But we respect our elders, so we'll just pretend he didn't know any better, mmm'kay?"

And I kept on walking, smile plastered on my face, while the old guy fumed silently behind me.

Of course, once we were in the car and my son was safely behind me in his car seat, I cried my eyes out. Because, yes, it is horrible to be an anxious new parent and have all your fears of complete strangers judging you come true like that.
posted by misha at 6:19 PM on May 4, 2012 [11 favorites]

Miko, you're right and I got a little free and easy with the Metatalk venting in the heat of the moment. Apologies to tzikeh for the flames. Different people think differently, sometimes you think you've figured that out and then find yourself in the tunnel again. Shruggo
posted by aydeejones at 7:16 PM on May 4, 2012

Wow I just the entire blue post on this and the entire gray post on this on one sitting and

HOLY SHIT THAT WAS SO FUCKING INTENSE
posted by OsoMeaty at 8:46 PM on May 4, 2012 [2 favorites]

the young rope-rider, I kept thinking about your comment. You mentioned that their kid isn't 100% healthy and normal and comfortable for people to see. And I just want to say that I also agree that it is not comfortable for many people to see a very sick child. But I think it is actually a good thing and a sign of functioning human empathy for people to be made uncomfortable by that sight. How much worse would it be if they just didn't care. Oh well, there's an extremely sick child over there, where's my burrito. That doesn't mean it would be good for them to other that child or shun them or mistreat them, or make them be hidden away. But they *should* be alarmed and bothered at the sight of a sick child, that is empathy kicking in.

And so I think some of the differing reactions come from the fact that people have different instincts about how alarming, upsetting, and serious situations should be dealt with. Some people instinctively find it to be fucked up, disrespectful and tasteless to joke and be lighthearted about those situations. To them it seems like the people who do that must not be appreciating the seriousness of the situation, must be self-centered, etc. And obviously other people find comfort in reacting in a lighthearted way. Obviously since these are the girl's parents they can react however they want. But other people will still have their own instinctive reactions.

But either way, I don't think it's because they think parents of sick children shouldn't be allowed to take them anywhere or share photos of them.
posted by cairdeas at 9:13 PM on May 4, 2012 [1 favorite]

Xarnop (and any others who may be feeling similarly), I'd never try to persuade you not to take a break, because that can be really healthy and helpful, but I'd also like to remind people of "My Mefi" (also My Ask) where you can select tags you are especially interested in, and also exclude tags that you'd specifically like to avoid.

For example, though I haven't worked on them enough, my My Mefi tags currently are:

art artist photography photo photos photographer painting painter paint graffiti streetart history music musician language science literature design games game gaming food illustration illustrator children kids men women film movies cinematography documentary Google crime feminism architecture media fiction publishing book books ebooks novels novel story stories writing author authors experiment experimental biography blog blogs gallery images culture video poetry android technology apps computer puzzle puzzles cipher code encode encryption fashion advertising psychology internet web hack guide howto diy festival awards award prize fun funny humor mystery dog dogs cat cats pets animals travel archeology anthropology sociology paleontology philosophy museum space astronomy patterns strange scifi sciencefiction vintage comics comic cartoon animation Guardian recipes collection statistics infographic software flash html5 fonts typography css marketing review

Filtering the Filter this way can provide a completely different experience of the site, for the most part. Of course some people don't tag so well, so some things can slip through. (Make good tags, everyone!)
posted by taz (staff) at 3:23 AM on May 5, 2012

This is not a homogenius society.

homogenius

...?
posted by adamdschneider at 6:20 AM on May 5, 2012 [3 favorites]

Smoke, thank you so much for sharing. I started this thread firmly on the side of everyone has a right to respectfully(!) share their discomfort with the format of that blog, since that was my reaction, and I was having a hard time relating to the experience of xarnop. Your explanation really helped bridge the gap, and being able to find that kind of insight is what I most strongly associate with my experience of this site.

Best wishes to you, xarnop - hoping you can come back soon.
posted by skrozidile at 7:35 AM on May 5, 2012 [1 favorite]

homogenius

stephen fry
posted by elizardbits at 7:57 AM on May 5, 2012 [11 favorites]

aydeejones: I am recoiling in hottor after reading tzikeh's perfectly entitled opinion as expressed. That's the creepiest sociopathic shit I've read in a minute, to appropriate some vernacular.

Please do point out the part where I'm a sociopath. Is it the part where I say how shitty it is that this baby has died, and how horrific it is that the parents will suffer forever? Because a sociopath has no empathy for others' emotions.

As Miko points out above, you're using the word wrong. And if you mean the generalized "has no empathy for others' pain," you fall into the same category as the others who are making the mistake that "someone who reacts to a given situation in a way that I find upsetting or distasteful"=="sociopath."

I've always believed--and I have expressed this belief several times on this site, actually--that there cannot be any life experience worse than the loss of a child. My gut reaction to how the parents went about this has ZERO to do with the parents' pain. Nothing.

Since you can't see the difference between an emotional response to part of a story and an emotional response to the whole story, then here--I'll diagnose your problem over the internet based on a single comment in a discussion thread. Just like you did. My take on your single comment is that your emotional development is stuck at a very simplistic place--far less nuanced than mine.

Am I right? Going by your comment here, all the facts support my conclusion.
posted by tzikeh at 9:33 AM on May 5, 2012

Also -

I said it in the original thread, and I'll say it again. Nowhere did I (or, as far as I can tell, anyone else) say that disabled or special-needs children shouldn't be seen in public, or that their parents are somehow wrong for taking them out of the house. I have no idea where that response came from, but I'll venture a guess that the people who brought that up have experienced that kind of reaction from people in other areas of their lives, and mapped it on to the conversation here, and immediately got defensive and angry about something that hadn't actually happened in the conversation.
posted by tzikeh at 9:36 AM on May 5, 2012

argh - aydeejones, I'm sorry, I saw your first comment and went to reply before I saw your second. I had no idea this thread was here, since I left the original thread after having to explain myself over and over and over, and never saw the MeTa link.

Thank you for apologizing, and please accept my apologies for not reading all the way through before responding to your first comment.

Smoke, I'm so sorry you're going through that; it sucks.
posted by tzikeh at 9:44 AM on May 5, 2012 [1 favorite]

tzikeh, I almost memailed you about this meTa, since I wondered if you'd removed the original thread from your recent activity (as I would have done) and so might not see the meTa link. If we had a time-travel pony I'd use it to go back and memail you!
posted by rtha at 9:57 AM on May 5, 2012

rtha - it's totally cool. I check in on MetaTalk once in a while, so I'd have seen it eventually. I should try to check in every day, since I know how quickly things can move around here, but I'm not usually a part of things that end up on MeTa, so I don't.

I appreciate the thought, though!
posted by tzikeh at 10:28 AM on May 5, 2012

Metafiter E. Coyote: HOMO-Genius
posted by fifteen schnitzengruben is my limit at 11:19 AM on May 5, 2012 [1 favorite]

I think this is a pretty fascinating intersection of the public and the private. On the one hand, to say that the blog is creepy feels a little to me something like criticizing the parents for having an open-casket funeral. I mean, what the fuck, I don't really think that maybe Creative Nonfiction dos and don'ts were really on the top of their to-do list.

On the other hand this is a public document for the wide-world to see. Metafilter is an analytical, wordy community, and I appreciate the tendency to limit sentimentality to anodyne things like panda sliding videos. And here we have this grief in its horrible naked glory, made more horrible by the format that seems to take the evil of this loss and tie it up in a sparkly bow. It's like the great fear of infanticide during the Victoria era -- it seems pretty funny now (because it was a myth and people were freaking out about it anyway) as a cultural aspect, but jesus, an actual infanticide is not funny at all.

It's the cultural packaging that can make the presentation of loss seem ridiculous. And we criticize culture here all the time. Yet, I hope if the parents do stumble on this thread, they'll realize that it is the presentation that is drawing some upset, not their loss nor their efforts in drawing attention to a disease.
posted by angrycat at 7:26 AM on May 6, 2012

I said it in the original thread, and I'll say it again. Nowhere did I (or, as far as I can tell, anyone else) say that disabled or special-needs children shouldn't be seen in public, or that their parents are somehow wrong for taking them out of the house. I have no idea where that response came from, but I'll venture a guess that the people who brought that up have experienced that kind of reaction from people in other areas of their lives, and mapped it on to the conversation here, and immediately got defensive and angry about something that hadn't actually happened in the conversation.

That's an interesting guess, but actually I am thinking about the different ways people respond to my (mostly) healthy, happy seven-month old. I'm talking not about them speaking in her voice or saying she thinks dudes are hot. I'm responding to things like taking pictures, taking the baby out and showing her off, or giving her a taste of food. Those are basic things that parents do with babies because we're proud of them and we're getting community support and socialization. Yet in this instance the very fact of people taking pictures of her or taking her places is called treating her "like a pet"; she's called "oblivious". That is the dehumanizing language I'm talking about.
posted by the young rope-rider at 9:02 AM on May 6, 2012

Also, to be clear, I'm not saying anyone is doing this purposefully. I just hope that in the future everyone here remembers how it comes across and thinks twice about whether it's something they would say about a typically-developing child, and if not, maybe don't say it about a child who is not typical.
posted by the young rope-rider at 9:33 AM on May 6, 2012 [1 favorite]

the young rope-rider -- ah, I see what you're saying. Good points.
posted by tzikeh at 10:17 AM on May 6, 2012

I was having a lot of extremely stressful reactions to that thread, which is made worse by the fact that the daughter I placed for adoption had her birthday a few weeks ago. I haven't seen her or spken to her and I don't have a present. I have milk, from when I pumped milk and sent it to her.. it splashed on the headboard of my bed where somehow it still rests. I will never wipe it off. I have thought about taking pictures of it. Of milk drops on a head board, in case "something happened to them" to take that last physical remnant of that connection to her. To when she was my baby.

When we grieve things like this, the loss of children, our reactions often do not look normal to the outside world. I have been through years of having worsened memory and mental functioning, having to sob in the bathroom at work because I can't stop the tears. Watching reality feel like it could melt. Is this a dream? Has this really happened? Has it been eleven years? Did all of this really happen, it's permanent, it's real? It's really lost? Those years that my baby could have been mine? Those smiles and watching her color and watching her take her first steps, listening to soft sounds of her talking quietly with her toys. I have seen glimpses, these glimpses of what could have been my life. Little momments of bliss when everything feels ok and then it is not. I can not describe the kind of screams and howls that I have heard come out of my body in the human language. That they may come even now, eleven years later-- this is not the sort of loss that you do a grief workbook, or read a nice text about suffering and healing and it becomes "repaired". You don't go the therapy and sit with someone and "do the right things" and therefore it becomes ok. You don't find a med that erases the truth of the force of your love-- love that will never die no matter how many fight to destroy it because it is painful to witness what it looks like when it meets with such loss.

I find the parents behavior bizarre. Bizarre like buying dozens of childrens books about babies losing and finding their mothers, about parents searching for their small children and professing never ending love, books about how no matter what a parent will always find a way to be close to their children. And reading them as if the words could reach through space and distance and bring that love to the child I will never stop being there for but am not allowed to express it. We are responsable for trying to cope in a way that does not harm others, but unbearable grief itself can harm others.

So in this sense the parents were choosing between truth-- unbearable grief that would harm their child's experience of daily life-- and dissociation/delusion.Clinging to something that could allow them to focus on joy and celebration so that their child would not be harmed by their grief. I recognize many people look at the situation and see creepy-- and there is nothing wrong about any feelings we have--- but I don't think it is objectively the truth. I think you missing something.

I see two parents who did what everything in their power to protect their child from the profound suffering of seeing their grief. Who did everything they could to set it aside-- somewhere, maybe even so far from themselves they can't connect with it at all-- so they could keep her safe. And it may harm them. But I don't think it will have harmed the child at all.

The truth is very vast and our perspectives are very small. But for those who have not tried to parent while knowing they will lose everything that is dearest to their hearts-- to find joy and hope and beauty in spite of terrible anguish--- your reaction is very far removed from the full spectrum of truth you would have in being closer to the situation.

Since I believed, possibly wrongly, that mefites in general valued accuracy and in depth understandings of things-- I am simply surprised there would be a focus on creeped out reactions without exploring them further-- and valuing discussing creeped out reactions over seeing a more complete truth.

I'm honestly still surprised at how people responded to this. But I have done a lot of reading on parental loss, coping mechanisms, trauma etc. Parental loss is very different than other forms of trauma and I have been through sexual trauma and abuse and near death experiences and held hands with the dying and for me there is really truly no way to describe how much more deeply the impact of losing a child can shred a grown human being into a shell of torment and desperate anguish. So I respect that people each have their own perspectives and all some people want to see is "I'm creeped out" with out looking further or examining that or seeing anything more.
posted by xarnop at 8:06 AM on May 7, 2012 [2 favorites]

So in this sense the parents were choosing between truth-- unbearable grief that would harm their child's experience of daily life-- and dissociation/delusion.Clinging to something that could allow them to focus on joy and celebration so that their child would not be harmed by their grief. I recognize many people look at the situation and see creepy-- and there is nothing wrong about any feelings we have--- but I don't think it is objectively the truth. I think you missing something.

I see two parents who did what everything in their power to protect their child from the profound suffering of seeing their grief. Who did everything they could to set it aside-- somewhere, maybe even so far from themselves they can't connect with it at all-- so they could keep her safe. And it may harm them. But I don't think it will have harmed the child at all.

xarnop, so do many, many of the people in this thread. You have just not been listening when they try to tell you so. You are blocking them out because you want to focus on your own suffering. Which is understandable, but not at all what Metafilter is for.

I hope you find blogging about your personal loss cathartic instead. Good luck to you.
posted by misha at 11:46 AM on May 7, 2012 [4 favorites]

Since I believed, possibly wrongly, that mefites in general valued accuracy and in depth understandings of things-- [...]

I'm not feeling as patient as misha. Without listing my life's heartaches and losses -- believe me, not only profound but absolutely Jobian in quantity -- this is kind of insulting; I am sure you don't mean it to be. Countless folks on this site have suffered just as you have suffered over different tragedies, and yes, including the loss of a child as unbearably awful as that is. For goodness' sakes, we have a MeFi member who's imprisoned for his political beliefs!

If you could just stop saying that no one understands their pain as you do. Please.
posted by thinkpiece at 12:30 PM on May 7, 2012 [7 favorites]

Ah, xarnop, I am so, so sorry that you are in this much pain.

I think that your perspective on what Avery's parents are doing is an unquestionably valid part of that discussion. And I think what you told us about your own experiences and grief is also an absolutely valid part of the discussion, and not out of place. I think they are important.

And I agree with you that often people who are in a great deal of pain can be made to feel as if they are not allowed to express it. It is true that it can definitely make others uncomfortable and act like they want you to just get over it or not talk about it.

But I really do not think that is what's going on here. I really think that the main reason you are running into pushback here is not because you are talking about your experiences and your pain.

I think the pushback is coming from the fact that people feel like you are saying that if someone doesn't feel as you do then they must not have experienced deep pain. That if someone doesn't feel as you do or disagrees with you, they are wrong, or they misunderstand the situation, or they aren't interested in depth or truth, or they are shallow. And beyond that, this MeTa made it seem as if you want those other opinions and perspectives to be disallowed, or shunned, or looked poorly upon by the community in general.

I think it will be okay and good for you to keep posting your perspectives. But kind of attacking other people's perspectives in these ways is the source of the pushback. I know how strongly you feel about them and how much you disagree with them, and it is hard to just try to tune something out when one feels that strongly about it.
posted by cairdeas at 12:45 PM on May 7, 2012 [4 favorites]

I don't in a million years think I am "the only" one to understand their grief. At all. I see things through my own experiences and I'm not sure I understand their grief specifically at all. I don't understand why calling people creepy for how they cope is not considered an attack, but me thinking that it is an attack and is potentially hurtful and not particilarly empathetic-- is considered an attack. In any case, peace.
posted by xarnop at 2:01 PM on May 7, 2012

xarnop, with all respect, I really think that your instinct that you needed a break from at least this particular discussion was the correct one.
posted by Sidhedevil at 2:18 PM on May 7, 2012 [2 favorites]

Maybe let's be the change by dropping it.
posted by palliser at 2:32 PM on May 7, 2012 [6 favorites]

xarnop, please accept my best wishes and my genuine sorrow for your loss. I very much hope that you find peace.
posted by jokeefe at 8:32 PM on May 7, 2012

xarnop, don't be afraid to come back and participate on the threads you might find are a distraction from your grief rather than a reminder. There are a lot of good and sympathetic people here.
posted by mippy at 4:08 AM on May 10, 2012