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16 September 2009 @ 11:49 am
National Invisible Chronic Illness Awareness Week  
I see that this is National Invisible Chronic Illness Awareness Week, and that I have many friends and acquaintances with chronic invisible illnesses.

Most of these I have known about; others I didn't know until the person mentioned it recently.

Because I like to think that I'm a decent human being, I try to be aware of my friends' and acquaintances' abilities, limitations, and preferences, and to accommodate them whenever possible without crossing the line into overprotective nagging. Conversely, I try to avoid saying stupid, hurtful things. I hope that my friends and acquaintances will correct me when I'm wrong.

On the other hand, one thing I've learned from the discussions this year about institutional racism and institutional sexism is that even saying, "I hope you'll correct me when I'm wrong" comes from privilege -- that doing so lets me abdicate responsibility for treating people well by claiming that I didn't know I was doing wrong, or that "my other friend with this condition said it's okay". It is my responsibility to treat people appropriately, not the responsibility of a person I'm harming to point it out to me. My only excuse is that, even more than race or sex or gender, chronic conditions are going to be unique to each person, that generalizing is likely to be unsafe, and that what is helpful for one person may be harmful to another.

I've also learned that doing a right thing so that I can think of myself as a decent person is almost as bad as not doing it at all; I should do it because it's the right thing to do, without any sense of self-interest. I'm far too self-centered for that to ever happen, though.
A Wandering Hobbitredbird on September 16th, 2009 04:45 pm (UTC)
I am not convinced that my motive for doing the right thing is that important. If I treat someone decently—including all the small things that can be invisible when done right, like not condescending to people, not calling them names, not taking credit for someone else's work—they benefit whether my motive is that I don't want to get into legal trouble, that I want others to think well of me, my own self-esteem, or because I care about them. This only becomes a problem, in my experience, when relatively privileged people start demanding credit for not being schmucks, for not groping strangers or using racist terms. Results matter, and your soul and mine are our own problems.
aedificaaedifica on September 16th, 2009 06:03 pm (UTC)
Yes, I agree.
The Redhead at the End of the Barjilesa on September 16th, 2009 06:08 pm (UTC)
This. Oh, this, in SO many different contexts.
zemhitchhiker on September 17th, 2009 07:17 pm (UTC)
yes, that.
Surrendering to the mysteryjenett on September 16th, 2009 05:47 pm (UTC)
Excellent points.

There's a thing for me about distinguishing between the personal and the general. Saying "Tell me all about asthma" is a general question: if someone wants general info, any number of sources can give them the basics.

But I'm always delighted (assuming reasonable time and such) to have conversations with people about what works for me, and I'd much rather do so than have them make assumptions about what's most helpful.

I do some of that proactively (both because it makes things easier for me to have resources people can check back on, and because I think the more people talk about what works and doesn't for them, the more people around them will understand some of the possible variations and needs.) But questions are also good.
Barbrahirah on September 16th, 2009 06:55 pm (UTC)
Personally, I am more concerned that the right thing be done than that the motives for doing it be utterly pure.
Johnjohnpalmer on September 16th, 2009 07:25 pm (UTC)
I've also learned that doing a right thing so that I can think of myself as a decent person is almost as bad as not doing it at all; I should do it because it's the right thing to do, without any sense of self-interest. I'm far too self-centered for that to ever happen, though.

Herm. I'm not sure I agree with the logic there.

Doing something good so other people think you're good is risky; the obvious risk is, you might do bad when no one's watching (or fail to do good if it's not impressive).

But I think avoiding evil and doing good both require active awareness. You need to think about what you plan to do, and what effects it will have, and that means you need some motivation, something that tells you to expend that effort.

So you need a motivation. And "I want to do X because I want to be a decent person" isn't that different (from what I can see) from "I want to do X because it's the right thing to do."

This rests on the assumption that we can define "a decent person" as "someone who tries to do the right thing in general."

TSJAFOtsjafo on September 16th, 2009 08:49 pm (UTC)
"It is my responsibility to treat people appropriately, not the responsibility of a person I'm harming to point it out to me."

People with invisible disabilities do have a responsibility to tell folks what unique requirements they need when they are not obvious. I have diabetes, folks who know that won't usually offer me extremely sugar-laden foods. Depending on the situation, I just say no thanks because explaining to someone I'm diabetic isn't necessary. I try not to wave my problems like a flag. But I don't expect them to be mind readers either.

It is my not so humble opinion that treating folks the way you'd want to be treated yourself is usually a good general policy. If that is hurting someone because of their unique invisible needs, it's their responsibility to let you know and why.
Bladerunnerbldrnrpdx on September 17th, 2009 12:31 am (UTC)

Not just people with invisible disabilities, but *anyone* with limits and preferences. Not any one of us are mind readers. If I do something you don't like, can't stand, or harms you, tell me! Is it better that I embarrass you by asking direct questions? ("Do you need help with the toilet?") Or is it better that I assume competence? (Not accompanying you to the bathroom and listening carefully at the door in case you fall or have a stroke or get stuck or...)

I don't necessarily need lots of detail either. "Give me a moment" is perfectly fine when you need to catch your breath or think extra hard for a word you can't find. Are we not going for a hike in the mountains together because you have a mobility issue? or because just don't like walking around outdoors with all the bugs & dirt? Doesn't matter! We can go see a movie instead. But I'm likely to offer because you're my friend and I want to share with you the things I like doing. And unless you tell me you don't want to go hiking, I won't know.
just the gurl you wantgirlgoyle on September 17th, 2009 03:25 am (UTC)
totally agree. I don't know what you were told in you institutional racism class but apparently we are supposed to be psychic. I see way more issue in assuming something based on visual evidence rather than inquiring about the facts.
Annetxanne on September 16th, 2009 09:24 pm (UTC)
Hah. You're one of the *least* self-centered people I've ever known. And I agree with everybody else--your motives aren't my business.
Bladerunnerbldrnrpdx on September 17th, 2009 12:41 am (UTC)
Also! Treating people fairly, IIRC, involves a certain amount of individualization of people-treating. Just because I know facts A, B, C, and D about a particular disorder or illness doesn't mean that all four of those things apply to you, it doesn't mean that any one of those facts occur to the same degree as anyone else, it doesn't have anything to do with your coping strategies and or the adaptations you use, and it doesn't mean you don't also have to deal with facts E, H and Q that most people with that illness or disorder don't have to deal with.

A prime example: I have a form of bipolar disorder (cyclothymia). It runs in my family. However, most people in my life don't know anything about it unless I've told them or they're very familiar with the signs & symptoms, and even then only if I've spent significant time around them.
My bipolar doesn't look anything like my brother's - his is much more severe, results in much more aggressive behaviors, is turned outwards as much as inward, is inconsistently treated, and generally has a much much higher impact on his life and that of everyone around him. His is sterotypical bipolar I. Mine is... smaller in every dimension than his.
Should he and I be treated the same way? No, that wouldn't be the least bit appropriate to either one of us. It also doesn't factor in my added limitations of chronic tendonitis (I get worn out mentally from the bipolar, and I get worn out physically by the pain from the tendonitis, and I get worn out mentally by the tendonitis keeping me from doing what I want to do - which sometimes is a trigger for the bipolar) or being short (hey, it has limitations as much as any other physical condition).

une idee fixeideealisme on September 17th, 2009 08:52 pm (UTC)
Invisible Illness
My boyfriend has ongoing sinus problems related to asthma. I've learned that the one most irritating thing to do is to say "Have you tried X?"
Bladerunnerbldrnrpdx on September 19th, 2009 12:19 am (UTC)
Re: Invisible Illness
More irritating, at least to me, than being asked if I've tried X is someone *insisting* that you should try X. I don't care if it worked for your brother, your mother, your cousin's co-worker's daughter-on-law or your dog's yoga teacher. I've either tried it and it doesn't work, it had benefit-negating side effects, or there's a reason I didn't try it. I resent the hell out of someone who won't take my word when I say "No thanks" or "It doesn't work for me".