Little boxes made of ticky tacky ...

[jeshyr]

It’s fascinating how strongly our brains want to put people into categories and label them even when we know logically how crappy and unhelpful and inappropriate those labels/categories can be… I have some friends now who are disabled in ways that I don’t recognise, and the urge to ask them what their disability is called keeps popping up and surprising me. Consciously it makes no difference to me and I want it not to matter and I try *very* hard not to box people in with their labels … but there’s still that little bit of my brain that demands to know.

Odd psychological dichotomy.

Comments

[dragonsally]

I think that is just being human, shows curiosity and interest in people.

[acelightning]

i agree with dragonsally. i don't think asking "what is your disability called?" is a way to label people; i see it as curiosity, and as a way to understand what the person's individual needs might be.

come to think of it, luv, i don't actually know what your disability is formally called - i'm pretty sure it isn't still "CFS", or am i wrong about that?

*hugs*

[jeshyr]

Most of the time, knowing the label doesn't actually help you appropriately accommodate people though - I can think of at least three disabilities without trying where I have friends with the same diagnosis/label but all spread along the spectrum from "works full time and raises a family" to "quadriplegic" or "bedridden". Knowing somebody has that label gives me zero information about accommodations, obviously - much better to actually ask directly about what accommodations are needed.

At the moment I have three diagnoses - 'Ehlers-Danlos Syndrome, Hypermobile/Mixed type', 'Dysautonomia', and 'Mast Cell Activation Syndrome'.

The CFS one is up in the air - I don't tend to say it now I have other things to say but it's hard to say whether it's there or not. Technically for a CFS diagnosis you need fatigue not otherwise medically explained, and EDS and Dysautonomia and MCAD all three cause fatigue ... so to know whether I actually had CFS I'd have to have all three of those under complete medical control, which has never occurred (and may never occur).

[acelightning]

i meant about the same thing that echan said, about wanting to know as part of being friendly. in my weird brain, identifying a problem is the first step in dealing with it. you tell me the names of your diagnoses, and i can go look them up. now i know that Ehlers-Danlos Syndrome has to do with ligaments, joints, and connective tissue in general, dysautonomia is a malfunction of the body's ability to maintain various types of homeostasis, and mast cell activation syndrome involves inappropriate allergic responses. now i know what kinds of questions to ask, in order to adjust things so as to minimize the risks of problems when you're around me. (incidentally, i note a great deal of overlap among the three, which leads me to all sorts of speculations, which i won't bother you with because you've probably figured out the same things long ago.)

in other words, knowing what someone's disabilities are is like knowing what kind of music they hate, or that they don't drink alcohol, or they're uncomfortable around dogs - it helps me be a better friend.

*hugs*

[echan]

I think there's a difference between asking for information to start understanding from and the less friendly just wanting a word or phrase that will be the end of the whole story. The friendly one is good!

[jeshyr]

I LOVE THIS THANK YOU SO MUCH!!!

The difference between asking about a label in a way that starts understanding versus a thing that shuts down further understanding is so very important.

I posted this same paragraph of musings on Facebook and was genuinely surprised that almost everybody disagreed with me about the acceptability of asking - it's fascinating how varied unwritten rules are. On further reflection, I suspect I have some sort of internal "don't stereotype people with labels" mental rule and it's spilled over into "never ask".

Hmm...

[ysabetwordsmith]

Guess that's an example of how totally differently I think. I don't care what the underlying condition is, and prefer to avoid medical details anyhow. What I want to know is if there's any kind of accommodation I need to make. If the person doesn't want to say, fine, I'll ignore it. But if I need to measure my front door or make sure there's a chair in the ritual meadow, it's a lot easier to know that before it becomes an issue.

Re: Hmm...

[jeshyr]

Asking how you can best accommodate people is totally 100% OK even in my messed-up head. Most of the time, knowing the label doesn't actually help you appropriately accommodate people though - I can think of at least three disabilities without trying where I have friends with the same diagnosis/label but all spread along the spectrum from "works full time and raises a family" to "quadriplegic" or "bedridden". Knowing somebody has that label gives me zero information about accommodations, obviously - much better to actually ask about what accommodations are needed.

I posted this same paragraph of musings on Facebook and was genuinely surprised that almost everybody disagreed with me about the acceptability of asking - it's fascinating how varied unwritten rules are. On further reflection, I suspect I have some sort of internal "don't stereotype people with labels" mental rule and it's spilled over into "never ask" in a larger way than most people's heads. On a related topic I would never ask somebody what country they're from - it seems crazy rude to me that it's most people's first question to a stranger with a strong accent or who seems to have English language difficulties.

How you describe not caring about the underlying condition is what I want to feel, and I suspect it's how I *act*, but it's definitely not what I actually feel. I've noticed that almost anybody I interact with ends up bringing up their diagnosis at some point in some context though, so I just wait and file it away when they do - and if they avoid ever saying it then I figure they *definitely* don't want to talk about it so that solves that anyway.

[feyandstrange]

I am interested in medicine, so I always want to know more about these things, especially from the more personal perspective. But I know that not everybody wants to know about this stuff or wants to talk about it. But I think that, at some point in a friendship, everybody wants to have an understanding of "what it's like to be you", including the good and the bad stuff. This doesn't necessarily have to mean "what diagnoses do you have" so much as it may mean "oh, so you have to use a wheelchair" or "oh, cooking is hard because you're sensitive to heat" or even "I wish I could see as many colors as you can!". Which is somewhere between "what accomodations should I make/how can I help best, please no gory details" and "oooooh can I read your medical file pretty please?" I guess.

And it is very human to want to have labels and put people in files with some check boxes. Everybody's arthritis is different, but folks who have arthritis may want to borrow that magazine with the article about an arthritis cure in it, whether or not they can walk (today). And now that I know/remember that you have EDS I want to hook you up with another nice lady on EDS so you can share ideas and snarky comments (assuming you don't already know her), partly for EDS but also because I think you'd get along. And if Bob and Mindy both have gut issues, they might both want flyers for the Crohn's fundraiser, and so on. It *is* because you care about them, mostly, I think.

[jesse_the_k]

I'm with you — with the wanting it not to matter and the wanting to know as well. Human brains have amazing capacity — they contain multitudes, I've heard :,)

(no reply needed.)