Let's talk about privilege some more because we never talk about privilege

[sabotabby]

Though it was written awhile ago, this article on non-survivor privilege is making the rounds on FB today. It horrifies me to think that there are families and supposed friends who pull this kind of shit, but yes, it happens, and I understand that it happens quite a bit. I've seen it happen in communities that I've been a part of, where cohesion and harmony became more important than the wellbeing of survivors.

Not to disability-jack an article on an entirely different sort of privilege, but it really did remind me of living with a disability/chronic/terminal illness. The first duty of the invalid is not to look after her own health, but to ensure that no one around her is inconvenienced by her condition or made to feel uncomfortable by being reminded that not everyone is in perfect health, that bodies fail, and that eventually we all die.

"You're exaggerating, you bitter crip! No one is actually making these demands; you're just imagining it!"

I can't count the number of times these demands have been made on me. It's everything from the "oh God, I don't want to hear about this" face when I'm too tired to lie about how I'm feeling, to the times people have explicitly told me that they don't want to hear about it, to the constant efforts of everyone around me to minimize what I'm going through. It's the bike activists who cheerfully tell me that I should take up cycling because it's soooo good for me and the environment and then look aghast when I tell them that my spine is brittle and if I fall, I die. It's the people at work who, when I quite bluntly say that there is no guarantee whatsoever that I'll recover or ever lead a normal life, reassure me that this is impossible. But it's not reassurance. It's silencing, an attack on my lived experience as a person inhabiting a failing body.

You can't turn disability off, any more than you can turn trauma off, or gender, or skin colour, or sexual orientation. It colours every aspect of your interaction with internal and external realities. It's an added burden to have to lie about it for the sake of other people's comfort, to not greet every, "How are you this fine morning?" with, "well, I'm still tired and I'm still in pain and I'm still terrified about the future." I get it. It's not the nicest thing to be in close proximity to a negative person. You want to shine a bright light on his negativity to make those bad-feelings cockroaches scuttle the fuck back under the rug. But it doesn't work like that.

Part of why I'm so bitter is knowing that in all certainty, I will never have the feeling of a pain-free body, never ride a bicycle, never skateboard, ever again, that there's a good chance that I won't live out my natural lifespan, that even if the tumor is removed, there will always, until I die, be a strong chance of a recurrence. But I'm also bitter because it's exhausting to be around people who demand that I lie to them and tell them that everything will be okay even when I know it won't be. Our entire culture buys into the myth that anything is possible with a can-do attitude with no acknowledgment that certain groups of people are automatically excluded from this truism, and that they are in fact tangibly hurt by its existence.

So got that, non-survivors? Don't ask survivors to lie to you. Able-bodied people? Don't ask disabled people to lie to you. It's not rocket science, but it can sure as fuck make the world a better place.

Comments

[grimreaperess.livejournal.com]

Yes.

[tanyahp.livejournal.com]

Yes. Spot on.

[mistersmearcase.livejournal.com]

To be fair, I'm going to say people sometimes say the wrong thing because they don't know what the right thing to say is. They guess and get it wrong. I don't think it's always because they're wanting you to stop inconveniencing them. I think for better or worse, a lot of people are very socialized to respond with something that sounds positive, and believe this will be welcome.

[sabotabby]

This is true in a lot of cases (and hell, I never know what the right thing is to say either). But I also know how boring it is to listen to someone whine about their health shit. And I recognize the "grandpa's talking about his hemorrhoids again" face.

[franklanguage.livejournal.com]

Yeah; it's uncomfortable to listen to anyone's tale of misfortune. I remember at my sister's wedding—for which I had scraped up to buy her a gift—I watched my aunt squirm when I talked my food stamps benefits.

[sabotabby]

But also, I make these posts in part to educate other folks about what the wrong thing to say is.

[franklanguage.livejournal.com]

Some people will never get it. There was a magazine called Mouth, The Magazine of Disability Rights that sadly isn't publishing anymore. (The editor-in-chief was ailing last I heard, and apparently they were preparing for the inevitable.)

I've been disabled all my adult life—with an invisible disability, which many people will assert isn't "real," but it's prevented me from getting hired plenty of times. Every so often, someone will say, "What's wrong with you, anyway?" "Are you drunk?" "Are you retarded?" So, yeah, I hear you; you can't say it loud enough, in my opinion.

[sabotabby]

And of course, many disabilities rob people of the time and energy it takes to agitate.

[pofflewomp.livejournal.com]

I am glad you do as even though I think I am more aware and tactful (when I want to be!) than most people I would still say wrong things on the spur of the moment, so it is good to be told what NOT to say so I am a bit better trained. It is hard because people are socialised to say positive things to offer reassurance, and in some situations I WANT people to say positive things, but also I find people being unrealistically positive very upsetting. When things are really bad I just want noises of caring and sympathy.

[smhwpf.livejournal.com]

*nods* - really, really trying not to ask you to lie, and will try not to do so with others.

I think a lot of people think they are helping (not the one's who actually say "I don't want to hear this" maybe) with the positivity thing, but so did Job's comforters.

[sabotabby]

I highly doubt you do this with anyone.

[terry-terrible.livejournal.com]

1 up.

[metalana.livejournal.com]

I frequently have difficulty with the "How are you?" greeting. I keep trying to answer the question honestly, when the only appropriate answer is "Fine". Before 11am, my answer is usually "Tired" or "Sniffly". Even those little revelations upset my office colleagues briefly.

So I can only imagine how your colleagues get discombobulated by your answers to polite inquiries. It's hard to find a little phrase that would counteract a lifetime of minimization training.

For myself, I might try responding with "And good morning to you too!" or "Thank you for greeting me" and ignore the literal question. Though usually I'm not alert enough to think of clever distraction strategies.

[ironed_orchid]

I used to pre-empt them by asking how they are first, and getting the polite interaction out of the way before they could ask about me.

[sabotabby]

I do that if I have the energy. Usually in the morning I don't.

[ironed_orchid]

That's the catch 22

[sabotabby]

Yeah, it's the not-alert-enough factor in my case. When I'm tired, I'm actually tired and my brain doesn't work.

[bcholmes.livejournal.com]

Some time ago, back on alt.poly someone explained that "How are you?" is the human equivalent of sending a ping to a server, and that the protocol says that a simple ping response ("I'm well; and you?" or "Not too bad") is the right response. Now I always mentally translate it that way.

As a geek, that worked for me.

[sabotabby]

This does make sense. But it still feels like lying to me, and that overwhelms rationality and even geekiness.

[ironed_orchid]

That's a great article, and your application of the same phenomena with regard to disability and illness is totally valid.

[culpster.livejournal.com]

I'm going to repeat here what I said on Heather's link: denial is not tantamount to ignorance. It IS tantamount to fear. And very often that fear comes from familiarity.

In the case of abuse, I observe that it does often run in the family, and that some people tragically decide that the proper response is to 'keep the peace' and protect the abuser. Absolutely these people need to be challenged, but who says they know nothing of abuse themselves, firsthand? I've been there; sometimes I backslide.

Your little wrinkle has the misfortune of terrorizing the entire human family: mortality.

[sabotabby]

Good point.

[lienne.livejournal.com]

Oh, man, "how are you?". I have an aunt who every time she sees me, without fail, asks "How are you?", and every time I answer honestly (usually with one of "I don't know" or "tired" or a shrug), she says "No! You should say you're GREAT! Why are you never GREAT?"

No. I shouldn't. Because I'm not.

And one time, I actually WAS great, and cheerfully informed her of this happy circumstance, and it was almost like the whole you-should-be-great thing was actually a funny running joke between us. And then the next time, I was I-dunno again, and she said "C'mon, you always say that. You should say you're GREAT!"

I say I'm great when I am great. The rest of the time, nope.

[sabotabby]

Yeah, I am honest to a fault. If I'm tired, I can't lie. One of my co-workers was trying to encourage me to say that I had a good weekend. I said that my weekend wasn't awful, but he kept pressing me. Finally I said, "An awful weekend is when I end up in the hospital. A not-awful weekend is when I don't. The other kind doesn't happen anymore."

[lienne.livejournal.com]

/hugs

i know the feeling

well not the hospital part, but the other one

[misslynx.livejournal.com]

I really hope my saying "How are you doing - I mean, besides all the recent horribleness you've been posting about?" or whatever it was (can't recall the exact words, but I know it came out really awkwardly) the other day didn't come across like that - although in retrospect, it probably did. :-( What I meant was more along the lines of "I really have been reading your posts and am not as totally oblivious about what's going on in your life as it may have just sounded by my beginning this sentence with 'how are you doing?'," but it sort of came out all wrong.

For the record, it is always OK to talk to me about anything you need to, and to answer any how-are-you type question as honestly as you feel like at the time, even if the honest answer is "totally crappy" or "I'm really sick of dealing with that question, can we just move on to the cookies please?" or whatever it may be.

[sabotabby]

It totally didn't! The opposite, really. Acknowledging that the default state for me now is horribleness is a gazillion light years ahead of any of the people this rant is actually about.

Also, even if it wasn't cool, cookies make up for a multitude of sins. :)

[kryss-labryn.livejournal.com]

Ugh, I SO hear you there.

I am over the virus I was fighting off, but I've been coping with the strep throat for about a month and a half, now. For the first three or four weeks, while I was still fighting off the hand, foot, and mouth thing as well, I would get up as usual to get the kids up, make sure Karl got dressed for school, get everyone breakfast, make Karl and Hubby lunch, get Karl brushed and out the door to catch the bus, find a movie for Alvena, and go back to bed and die until either the movie ended or Alvena needed something. At which point I'd get up, deal with it, and then fall over again.

For dinner I'd get Mike to cook up a frozen pizza for him and the kids. I didn't have any; with my sore throat, I couldn't even swallow liquids. I would have a yoghurt cup and try and choke down my meds (which at that point involved not only antibiotics, but also five different kinds of painkillers), try and choke down a mouthful or two of juice, and then head back to bed, genuinely concerned that I would/will develop kidney stones or failure from drinking so little. One of my meds (which I've been on for years) is not considered good for long-term use due to the risk of kidney failure it carries. But I should be fine so long as I drink lots. So this isn't entirely an empty worry.

I lost fifteen pounds just in that first week. No one has noticed (or, apparently, cared) that I can't eat or drink, or that I lost so much weight so abruptly. Except the dog; he comes in and checks in on me, as does Alvena. So the preschooler and the retriever care. Hubby, not so much.

Fifteen pounds off, okay, bright side, I suppose, but I'd rather not have dropped that much weight at the potential cost of my kidneys, yeah? Also, losing several pounds a day isn't healthy, especially if you can't even stay hydrated.

And I'm still fighting with the damned strep throat, so I still can eat very little and drink less (I mostly subsist on Freezies and yoghurt these days), although I am drinking a hair more than I was. Still not enough, though.

Meanwhile, Hubby used every damned dish in the place and didn't bother doing dishes or sweeping the floor once the whole time I was bed-ridden, so for about three weeks. At that point I gave up and did them my own damned self. I did ask him to help with the dishes, but he refused, citing the mess I had left the kitchen in. Which, after the last time I did the dishes before getting ill, consisted of a lot of clean dishes and five glasses and mugs, which I didn't wash because I didn't have any more room in the dish rack.

Apparently that mountain of dirty dishes was my fault, because I didn't ask him to help with them until it was really bad. Far too much to expect one person to do, and so I, the infectious sick person, should do them. And cook. And clean. And do the laundry.

And yet, when I say, "I feel like shit, I'm going upstairs for a bit," the response is, "So you're going back to bed. So nothing's going to get done. Again." And when I point out that I am, in fact, still sick, he just points out that I've been sick "for months" and he's sick of hearing about it and about how I can't do anything.

Yeah. Well, you know what I'm sick of? I'm sick of not being able to swallow. I'm sick of having muscles so weak after a month and a half in bed that, even discounting my bad hips and back and knee and arm (which I know he is also sick of hearing about, because it's been going on for over three years now and he is tired of me grunting and wincing in pain and generally making a huge production out of it--I'm hurt, WE KNOW) that it takes me literally about 30-60 seconds just to stand up from a chair. Or longer, depending on which chair I'm in and what there is to grab to haul myself upright and whether or not I need to call the dog or kid over to hang off while I do it.

(Continued)

[kryss-labryn.livejournal.com]

(Continued)

I am sick of not being able to wash my hair whenever I want but have to choose to only do it on days when I can lift my left arm high enough to get that side of my head. I am sick of having to be a Napoleonic tactician just to figure out how to roll from one side to my other in bed without screaming. I am sick and tired of expecting every time I change position in the slightest to hurt, and being right about it every damned time. I am sick of being the only one who ever does any housework around here, yet whenever I do manage to get something done, it not being noticed. But if I didn't get something done? What's that? The stairs really need vacuuming? Well let me drag my sick-as-a-dog ass out of bed and get right on that, okay? Because obviously I am only being "sick" as an excuse to get out of doing housework. You know. Despite him being there at the doctor's with me and the doctor telling him to take a couple of days off work (it being a Thursday) to look after things for me and help with Alvena so I could put more energy into getting better. By which I mean, yeah, I was (and am) still changing her bum and helping her with the potty. And cooking. And doing laundry. But hey, at least he was around to keep Alvena company and semi-occupied, so there's that.

I am sick and tired of being guilted for being sick. I am on my third damned course of antibiotics (and that's with the second one getting extended) and it's still not helping. But, you know, I really should just shut the hell up about being sick, get on with my chores, and, like, have early nights or something.

Because he's sick of it.



/rant but I've been stewing on this for weeks. >:(

[kryss-labryn.livejournal.com]

I mean, yeah, it's not life-threatening or anything, but it bloody well is life-altering, and it causes me a lot of grief. Which I should just shut the hell up about and get over or something, because it's annoying, even though the only time I bring it up anymore is when I tell him I'm heading back to bed so he has a clue where I am if he's looking for me, instead of just disappearing on him.

Be as sick as you like, but do it on your own time.

[pofflewomp.livejournal.com]

Bloody hell. Ok, your husband needs special classes in how to be an equal partner in a relationship and pull his weight. As well as in sympathy and supportiveness!

Sorry not got back to you via email - have been a ranting wreck myself. I hope you do get properly well soon and get more housework help (though it sounds like you'd need a miracle).

[sabotabby]

Oh honey. I'm sure you love him but I kind of want to bitch-slap him right now. You are ridiculously ill; he should be taking care of you and the kids, not sitting around like a lazy-ass still expecting you to pick up after him when you can barely roll over. The last time someone pulled that shit on me I smashed the dishes rather than clean them.

Also, get well soon. This sounds like a brutal ordeal.

[silmaril.livejournal.com]

I do not understand people sometimes.

I mean, here the burden of making myself understood is on me as the privileged person. I have to be careful and find the right words so I can tell you "I understand it when you tell me how hard/painful/difficult what you are going through is, even though I do not feel it myself on a visceral level; I have empathy for you but I also have the sense to know it is never goging to be 100% accurate so I do not flaunt that empathy in your face; when you tell me things about your condition I take you at your word; and I am really, really sorry that you are going through all of that."

And then there are people who want you to tell them that it is going to be all all right, to make themselves feel better (because ultimately, such assurance can serve no other purpose). I guess that's the crook of it, right? It makes it about them, instead of about you.

Hrm. OK, maybe I do understand. But I don't like it much.

[sabotabby]

Yeah, that's pretty much it. I feel like I'm partially at fault for being such a doormat my entire life, so that people who know me are shocked when I'm like, "hey, I'm a person with needs and stuff." I'm very used to being inoffensive and accommodating and making sure that everyone else's needs are taken care of before my own, and no one seems to be used to the idea that my fundamental purpose in life isn't to make them comfortable.