
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.