on joining communities - how not to do it.

[maccaj]

Happy birthday (late) to tehsunny... glad it was a good one. I'm still working on various "five things" posts, but in the meantime, I have something more interesting to blog about. In my last post, I mentioned that I have friends with CF who know that I want to be a CF doc some day but (presumably) don't find me too terribly creepy, and that as someone

Comments

[indierockbird]

it just blows my mind that someone would be so presumptuous as to assume that they know more about a condition/disease than the people who have been living with it for however long.

[maccaj]

heh. mine too, but it happens all the time. They don't mean any ill, of course, which makes it awkward to call them on it... it's a lot easier to get angry with someone who's intentionally being a jerk. Simple well intentioned ignorance is hard to fight without coming off as though *you're* the jerk in the equation. :/

[nightengalesknd]

Welcome to the entire medical profession.

One of the things I say over and over to my coworkers (doctors) is that even the worlds leading expert in condition X is not the expert in condition X as it affects person Y who has the condition.

[maccaj]

exactly. And it's so awkward to try to convince someone of that when they are well intentioned, and have obviously studied/trained/devoted their lives to condition X. I respect those people very much... hell, I'm *alive* due to those people and their efforts. But they'll still never know more about my conditions than I do. I'm still trying to figure out a way to explain to medical professionals that knowledge and second-hand experience does not equal first-hand experience, without them feeling as though I'm in some way diminishing the importance/scope of their knowledge.

[ryotboi]

yeah, that's why hardly anyone if at all, responds to these inquests/surveys from the TAB community members. because it's so obvious they're light years away from understanding, and depending on their wording reveals more about their psychology and 'inner needs' than their professed interest in 'special needs'. i can see parallels in the social work industry, with many people who *don't* come from the communities they are serving having major personal issues themselves about 'proving' something or other to themselves or others. and if their fantasy of insider/outsider harmoney doesn't work, it's back to pointing fingers or labelling the 'other

[nightengalesknd]

As far as non-disabled (parents, friends, SOs, allies, professionals) in disabled spaces, I think it comes down to one simple thing.

Can that person conceptulize a PWD, real or hypothetical, as a peer?

[maccaj]

such a good point. I'd never really thought about it in those terms before, but I think that's the single most concise way it's possible to put things. Thanks for that.

[nightengalesknd]

I don't think I ever thought about it in those terms before either. But. . . I think it's right.

Hey,

[charlie_shadow]

prydera told me to say hi and friend you, so: Hi! I've added you.

Re: Hey,

[maccaj]

hiya! added back :)