I don’t get to talk about spoons

I don’t get to talk about spoons.

If you’re thinking Huh?, let me point you to The Spoon Theory by Christine Miserandino.

My partner has MS. She’s a member of the disability community. I’m not. She gets to talk about spoons. I don’t.

What this means in the simplest words I can find is: being a disabled-bodied person is a different experience from being an able-bodied person, regardless of other factors of race and class and so on. It’s different. Being a person of color in this culture is a different experience from being a white person, regardless of other factors of class and gender and so on. It’s different.

If you don’t share an experience of difference — the kind of difference that hampers your access to physical space, cultural privilege, opportunities, social respect, or being seen as fully human in the eyes of the people around you — please don’t turn around and make that experience about you so you can then participate in it.

I don’t want to hear about your personal “color-blindness” or your paean to how brave the crippled people are because they have so much more to deal with. Nor am I concerned today with whether someone else’s difference counts as much as yours. Difference is, people: can we just acknowledge it and deal with it? And part of dealing means that sometimes you just stand back and give people space to be, to speak about what’s different for them, and to understand that you don’t necessarily get to be different that way too. You can do this even if you don’t think their difference is important, or you don’t understand why it’s important to them, or you don’t see the problem, or whatever. You can, if you choose, simply acknowledge that it’s outside your experience, rather than going on at length about how hard your own stuff is. It does not diminish you if the occasional conversation is not all about you. There is a great vast amount of the world that is not about you, and sometimes people want to talk about it.

So stop making it about you and start listening to how it is for the people who are Not You. Take their word for their experience. And understand that sometimes they just don’t give a shit whether you have suffered too. And today neither do I. I don’t care whether you think it’s fair that the disabled community wants to own the idea of spoons, the same way I don’t care whether you think it’s fair that some people have spaces where white folks don’t get to speak their mind about the challenges of whiteness. I just don’t care right now.

And I’m not here to fight about it. It’s a big world and you can find your own space in another part of it, so if you believe differently, please go express it on your own blog. I will turn off comments in a New York second if things get even the slightest bit whiny or trollish. I’m just not in the mood. Is that unfair? Tough.

12 thoughts on “I don’t get to talk about spoons”

  1. As ever, an extraordinary amount of sense written beautifully. It captures what I keep trying to say to people about how I view/experience diversity and inclusion where I work. Thank you for sharing.

  2. ROTFL!

    And thank you. I wish I had a dime for every time some one tried to tell me that she could totally relate to my lupus because she occasionally felt achy/feverish/fatigued/brain-fogged. Arrrgh!

  3. Thanks all for your kind words.

    Phoenix, LOL right back atcha. Nicola and I would be rich if they gave out dimes for all the people who get “really tired too,” along with all the people who say But you look so good! (including the wheelchair-pusher guy at the Atlanta airport who nearly refused her a chair because Well, you look fine to me!). Arrrgh indeed.

    Zack, nothing in particular. An accretion of annoyance rather than a catalytic event.

  4. Oy. The Curse of the Invisible Disability. I’ve actually considered getting a cane so that I’m perceived as less-than-rambunctiously-healthy. (And, of course, so I can pound the crap out of people like wheelchair-pusher-guy. What an ass!)

  5. Thanks for posting this. My mind’s been going on similar lines lately… you put this incredibly well and I’m glad to see that at least so far you aren’t getting a flood of angry “I think I’m disabled so I should get to talk about spoons!” the way I did.

    1. Oh yikes, Lara, that hadn’t occurred to me…I’m sorry it’s been happening to you. I imagine it must be hard/tricky/delicate to tell an insistent person that by your definition, she’s not part of your community.

  6. Thanks for sharing this I’m sending it to my daughter who has F/M. Don’t worry, I’m going to respect your wishes and not talk about my own experiences with, “but you look fine to me.”

    I did want to say that I do wish there was something I could do to help.

    Okay there’s a Dodger game on TV right now and that’s pretty rare for this cable company so I’m turning my eyes and attention to that.

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