Same old, same old

[nightengalesknd]

Today I attended a conference largely aimed at parents of children with a particular condition. The specific condition doesn’t matter here. The information sheet handed out about the agency that sponsored the conference, an agency which, I might add, does a lot of great things, wrote that this condition is “one of the most devastating of all”

Comments

[androgenie]

I just wanted to quickly say that I would have loved to meet other disabled kids growing up (mine is too rare to actually get a matched peer group, but anything would have been great). [im on my phone & can't do a long resposne]

[nightengalesknd]

Yeah. I know many many adults with disabilities who feel this way and who value their adult friendships with others with disabilities (including cross-disability.) That's why I was so amused by the professional who has worked with adults with disabilities for years acting as though this was a completely new concept.

[wotyfree]

Have you ever read _With Love From Karen_?

That book meant a lot to me because... _Karen_ was all about therapy and miraculous recovery. How she learned to walk, and learned to walk up stairs and how she learned to write.

And then _With Love From Karen_ was largely about the price of that being very, very high. And their decision to stop therapy. And the book ends with her deciding not to walk anymore.

I didn't understand why that meant so much to me. I do now.

[nightengalesknd]

I have read both Karen and With Love From Karen many many many times. Most recently, last month

[wotyfree]

Yes. It was an honorable mistakes at the time, I think. I think Karen got hurt badly by it. But it wasn't the same as someone doing that now. They didn't know better.

(I think insisting that she learn to write before letting her get a typewriter was much less defensible though.)

[nightengalesknd]

Yes.

And both things still happen now. Well, for typewriter, substitute computer/iPAD/dictation software. But yes.

And as badly as Karen got hurt, I suspect she fared better than many many of her agemates with disabilities because her parents generally made a good faith effort to consider her as a whole person. They even sought the input of disabled adults - something we still have difficulty getting most parents to do.

[shehasathree]

Do you feel like an anthropologist, sometimes, when this stuff happens?
(I find it helps, to feel like an anthropologist. Amusingly, sociology is actually closer to being my disciplinary home than anthropology is, although i find they have much overlap.)

[nightengalesknd]

Yes, although more in medical school and in medical contexts. It definitely helps me to remind myself that medicine is a culture, with it's own history, beliefs, rites and rituals, and that what I am experiencing is often not the result of specific people being jerks but that of people who have been indoctrinated into their culture of medicine without the benefit of cultural relativity or the knowledge that other cultures exist. (There are also specific people who are jerks. In all cultures

[shehasathree]

Molecular biology + medical anthropology - what a wonderful combination! Thank-you for the reminder about [problematic (sub/)culture] vs. [being a jerk]. I do find the perspective(s) of medicine-as-culture helpful for that, too (although I also spend a lot of time being angry about the screwed up norms of said problematic cultures).

Thanks for the rec - sounds like something i would like to read.

[nightengalesknd]

Oh I am quite outspoken about the problems with medical culture.

It just helps me to remember that frustrating people have been successfully enculurated.
And that part of belonging to a dominant culture is the privilege of not realizing your views come from culture at all but rather seeing your views as The Truth.
And that I only noticed the enculturation process because I had previously been involved with disability culture

All of this restrains me to using my - admittedly sometimes patronizing - teacher voice, rather than screaming, when I attempt advocacy. . .