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

[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.