on helpfulness

[adularia]

This Feministe post is required reading if you are inclined to helpfulness and you know anyone with a disability or chronic illness, which you do.

Yanked from phinnia's clickies for the day.

Comments

[qijm]

Speaking as someone for whom that post claims to be speaking for, I think the comments are also required reading, most particularly Arnold Layne, dananddanica, and Casey.

The post makes a assumptions, claims, and requests on my behalf that I'd really rather not have made in my name. If someone says to me "Oh, depression, have you tried St. John's Wort?" for the thousandth time I may be annoyed at the repetition, but it's not insulting, it's (possibly clueless) helpfulness. My frustration may be valid, but it is absolutely 100% my responsibility to deal with it, not theirs. I am responsible for my emotional reaction.

(And yes I have, and no it didn't work. And exercise did, funnily enough, although I refused to admit it to myself until I actually tried it for other reasons.)

[quiet000001]

*waves hello* *posted comment as Casey*

You summed it up quite well: "I am responsible for my emotional reaction." That's what I was trying to say.

[gement]

Yes, I was glad Arnold made his initial points, because otherwise I would have had to leap in with them. They inspired a much more nuanced discussion of what kinds of advice might be more and less considerate. Obviously there are outliers who want no advice or all advice, but there seemed to be a pretty good consensus on what considerate advice might sound like

[quiet000001]

I think a reframing would make me feel more comfortable with it- part of my issue with it as it stands is that I feel a lot of people who are genuinely well-meaning will probably take it to mean 'just don't say anything', and how do I KNOW that person doesn't know something that would be useful to me? I mean, having a medical condition does not automatically make me an expert on that condition, with new information just turning up in my brain whenever something is discovered, you know

[garpu]

I guess I'm in a strange position, being in a family of narcoleptics (my dad and my half-sister.) On the one hand, my dad's narcolepsy was something that was never spoken about. Ever. It (like his alcoholism) was this big thing you never talked about and never let on outside of the family unit, or even discussed within it. But, OK, I'm the privileged non-disabled person. His disability, his rules, I can cope. Even though he's been dead since 1995, I feel weird talking about it.

My half-sister, on the other hand, is very public with her narcolepsy and has even appeared on an MPR segment about it.

I guess if it's someone I know well, I'll default to letting them let me know what I can do. If it's someone like my half-sister, I may say that I've heard an interesting bit of research, article, etc. But I don't ever presume to know that I know better than her doctors, for instance.

[heinousbitca]

I swear if one more person authoritatively tells me that Coenzyme Q-10 will clear that right up, or that not eating wheat will mysteriously solve a genetic issue, i will just shriek like a banshee.

[quiet000001]

Are there any proper studies done to show CoQ-10 is good for all the things people like to say it's good for?

(I ask, because I am only aware of ONE study, pertaining specifically to migraines, where they found a decrease in migraine frequency in a group who took a relatively large dose- more than is in a typical little supplement pill- regularly.)

[stolen_tea]

Huh. This has helped me realize one of the things I don't like about the "privilege" concept, which I've been mulling over for a little bit...

It seems OK as a tool to help people get outside their own head, by making them think more about what it's like to be "abnormal" in ways that they themselves are "normal". But as a way of viewing the world in life, I think it's bad from an engineering standpoint. It seems like trying to avoid being offended by the Internet, by removing everything offensive from it, rather than by simply not being offended by as much stuff.

[adularia]

Can you expand on what you're thinking about privilege?

It's a recurrent theme in my thinking these days, since I just read a book on it, and living in NYC makes privilege issues painfully clear...

In re the article, I want to reiterate the part where she wrote "Stop. THINK." -- not "the polite thing is to say nothing." Clearly, there are and will be people who're interpreting it as "say nothing", but I'm not seeing how "stop and think" is bad advice.

[stolen_tea]

I can't promise very coherent thoughts, but it's been in my brain for a few months now, and I've done some web reading, but not actually a book-book

[stolen_tea]

My general beef with "privilege" as a day-to-day concept is that it is not conducive to a) persuading people who are initially hostile, and b) leading a happy life