Boundaries

[eschatonic]

I'm from Los Angeles and it really is OK here to ask that kind of thing.

Have you asked local disabled people whether they think it's okay?

You know that thing I said above about Californians, and how they will ask you ANYTHING?

All the disabled people I know were kids I went to school with.  And I went to school in Berkeley, where for assorted historical and political reasons, the University* tends to encourage a very up-front, in your face attitude about all kinds of minority issues, from sexuality to disability to religion to everything else.  So....no, I've never asked anyone if it was ok to ask about their disability.  Generally they come right out and tell you if they think you can't figure it out on your own.

I dunno, I guess we will ask really anything.  And it IS considered polite here.  The other day a friend of mine mentioned that she was having surgery, and the rest of us immediately asked why.  It's not a serious problem; she isn't in pain and hasn't recently been injured.  But if she was in pain, or had been recently injured, and we didn't ask, she'd have felt that we were indifferent to her problems. And regardless, if we didn't ask, she'd feel that we were indifferent to any anxiety she might feel about having surgery.

It's so normal here that when we do this to East Coasters and they're all "none of your business!!" we're actually a little offended. 


*I mean the larger community of the university staff and faculty and students, as well as the city of Berkeley.  The University of California, as far as I can tell, does not give a damn about anything except collecting money and perpetuating their reputation.

[miminnehaha]

I've been giving this a lot of thought... it is probably different for me, since my health issues are invisible.  So people already know something if they know enough to ask-- no strangers on the street wondering where my colon went!!!  But I do find that I only get irritated with people who are irritating.  Most of the time, talking about my problems with my body isn't much different than talking about my problems with my car*--  I'll chat about it with anybody.  I think it's the few people who want to make it a big deal, like pouring on the pity or feeling big for "helping", who make it tougher to get through the day.  They impinge upon my shrug the shoulders, keep moving, it's just the way it is vibe. 

*Less personal, actually-- I didn't choose this body, but I actually paid money for my car!

[Elizabeth Bear]

I've been giving this a lot of thought... it is probably different for me, since my health issues are invisible. 

My health issues are invisible, too, largely. So I have to out myself if I want anybody to know.

Although sometimes I think 'disabled' is the default state. I don't know all that many totally able-bodied people. *g*

I agree that it's very much an individual thing. for me, the politest thing is not to assume ANYTHING is open for discussion--but again, I am a Yankee. And as a Californian noted above, my polite is their scathingly rude.

[DavidG]

I've been giving this a lot of thought... it is probably different for me, since my health issues are invisible. 

My health issues are invisible, too, largely. So I have to out myself if I want anybody to know.

I have both a visible disability in that I walk with crutches and invisible disabilities in chronic pain and HMS and probably dyspraxia. To a considerable degree the visible disability is a symptom of the chronic pain and hypermobility rather than independent, but there's a definite difference in how people react to them. Because they can see my crutches that seems real to them, but because they can't see the pain or the hypermobility that doesn't seem as real to them and I think that's a problem faced by many people with invisible disabilities.

[CJ]

So much of what is and isn't appropriate or offensive depends on the individual. My rule of thumb is to keep an eye out in case someone with a visible disability seems to need help, and then ask rather than jump in.

My officemate has a very visible twitch/tic type of thing. I have no idea what causes it and he has never seemed forward about it. I haven't asked, and won't unless he brings it up himself. On the other hand, I have essential tremor, which is also visible although often mistaken for being cold/nervous/etc. And I don't hesitate to talk about it. Our other officemates and classmates have picked up on our different way of dealing with our minor physical oddities. Nobody asks my officemate about his tic. People sometimes ask about my tremor because they know it's not a problem.

The regional differences in this conversation are fascinating!

[Felicia1066]

Sometimes it's not out of line--it may even be courteous--to offer some assistance in a dangerous or wearying situation.

But make sure you offer first, don't just do it! What seems like 'help' to you may be anything but! People inevitably try to open doors for me, even though I can open them just fine, and someone holding the door inevitably means I'm left with less space to get through and with crutches I'm 50% wider than most people to start with..... I've even had people dive in front of me to get to a door, threatening to knock me over, and then insist that they would do the same again because they were being 'polite' and whether it helped me or not didn't come into it. A friend of mine hates having people hover over him when he's climbing stairs, they make a difficult task far more difficult. Other friends who use wheelchairs actively loathe having people grab their chairs to try and 'help', they usually don't need it, it's an invasion of their personal space, and several have had their chairs damaged by unthinking 'help'.

I literally shuddered with horror at this description. Yes, literally. That's just such an incredible trespassing inside someone's personal boundaries. I don't have any experience with physical disability myself - the worst I've ever had to deal with was seven stitches in my hand and a bandage for two weeks - but I do have a great need for boundaries. Part of it's being Swedish, part of it's just me. (Okay, pretty much everyone on my dad's side of the family.) You just don't push yourself on someone that way. You don't.

I do ask "Do you need any help?" but I do it the same way I'd offer to help a mother with a pram, or offer my seat to an elderly person on a crowded bus or subway.  At least, it sounds the same to me - I obviously can't speak for how the other person hears it. And if they say "No, I'm fine" then you damn well take their word for it! Anything else is an insult, IMO.

[miminnehaha]

... there's a definite difference in how people react to them. Because they can see my crutches that seems real to them, but because they can't see the pain or the hypermobility that doesn't seem as real to them and I think that's a problem faced by many people with invisible disabilities.

For sure.  I also struggle, when folks are aware, with the difference between ^1.those who neglect to take the challenges into consideration and think I'm lazy, and ^2.those who like to tell me not to bother and seem to prefer I'd go sit in the corner and shut up.  I find that an interesting corollary to how people treat the visible challenges, too: try harder or get lost! 

[miminnehaha]

... my polite is their scathingly rude.

The regional differences in this conversation are fascinating!

And full circle!  Since moving only 500 miles put me in a surprisingly contrasting culture, I'm fascinated.  So my question now: (how) do the "manners" implications of our regional cultures affect how we read the exchange between Brady & Gray?  

[tylik]

I have both a visible disability in that I walk with crutches and invisible disabilities in chronic pain and HMS and probably dyspraxia. To a considerable degree the visible disability is a symptom of the chronic pain and hypermobility rather than independent...

Oh, now that's interesting. I am increasingly suspecting (well, okay, this has been mentioned by a couple of PTs and a couple of physicians, so it's more than a suspicion) that my tendency towards hypermobility and lax joints plays a role in some of my physical issues. I am thinking there's likely a minor connective tissue disorder. Of course, that was there before the car accidents, and at this point my training regiment encourages muscular stability, but also some kinds of hypermobility, and my body is hacked within an inch of my life, so who can say? But the hypermobility clearly runs in the family, if probably at a fairly low level. I do have this suspicion that my joints aren't really supposed to randomly pop out of place as often as they do. (I've gotten very good at putting them back. Sometimes I think I'm going to write a book about adapting osteopathic manipulations for use on one's self, but then it occurs to me that that might just be a horrible idea...) One of the faculty members seems to have similar issues, though I haven't spoken to her about it recently and she seems to be doing better.

My issues are generally invisible, but I'm pretty public about them. It's one of the ways I battle my own neuroses there. K claims that we are both wont to crawl off into the woods and hide at such times (though he generally does not have the injury history there)... but that has not been a particularly useful approach for grad school, for me. (And people in my department have been wonderfully supportive. And people in my other department... probably would have had they much clue what was going on.) And I do confuse people - most people know about the martial arts, and the spine stuff, and I tend to get a lot of random concern about whether I should be lifting heavy things. (No one ever says "How long have you been at your computer? Shouldn't you take a break now?" Well, except me, to myself.)

"There's two ways to pronounce I-N-V-A-L-I-D."

...which I'm quoting just because it's such a brilliant line. I *still* waste energy feeling guilty about my body not working. Not even to get into the "don't tell anyone because then they'll know you're weak and come and get you!" gremlins...

*Less personal, actually-- I didn't choose this body, but I actually paid money for my car!

For me it's been useful to remember that I *am* my body. But it certainly doesn't make it less personal.

[jimsmyth]

I have molded shoes for my feet, and one of them has a brace with it, transferring some of the weight from my foot to my leg, to avoid further damage.

Usually, people ask me about it after they've known me a bit, and I happen to have not minded when they do, despite my being in Yankee-land, but it's always that put-on-the-spot feeling of "do I want to be the ambassador from diabetes-can-cause-bone-damage-in-feet-lad today?"

Today, a woman I was working with simply said "I noticed you have a brace on your shoe."  Period.  What to say in response, or indeed whether to say anything, was left totally up to me.  Even the most sensitive of manners on my part would have required nothing more on my part than "Yes, there is."

I thought that was pretty cool.

[Elizabeth Bear]

I bet she's from here.

That was a TREMENDOUSLY New Englander thing to say.

"I notice you have a six inch spike sticking out of your skull."
"Yes, I do."
"Need a ride to the ER?"
"Figured I'd give it a day and see if it slides out on its own."
"More pie?"

[DavidG]

So my question now: (how) do the "manners" implications of our regional cultures affect how we read the exchange between Brady & Gray?  

They can, but there's multiple levels of communication going on here. If the words say 'you're a Yankee ass' and the conversation says 'I'm really glad you came' and the sub-text is 'In bed, now', then it's a sure sign you need to go back and think about whether you may be misunderstanding something.

People are strange, people from the next village are stranger, any further than that and we're getting into seriously wierd. We shouldn't try to force every conversation into the perceptions we'd use at home. It's possibly easier for those of us who aren't American*, all of the team are foreigners and there's that distance no matter whether they come from the South, New England or Hawaii.

*having worked extensively with Americans and Germans and holidayed elsewhere in Europe I'm convinced I'm culturally closer to the Europeans than to the Americans, no matter the language differences or similarities.

[miminnehaha]

So my question now: (how) do the "manners" implications of our regional cultures affect how we read the exchange between Brady & Gray?  

They can, but there's multiple levels of communication going on here. If the words say 'you're a Yankee ass' and the conversation says 'I'm really glad you came' and the sub-text is 'In bed, now', then it's a sure sign you need to go back and think about whether you may be misunderstanding something.

People are strange, people from the next village are stranger, any further than that and we're getting into seriously wierd. We shouldn't try to force every conversation into the perceptions we'd use at home. It's possibly easier for those of us who aren't American*, all of the team are foreigners and there's that distance no matter whether they come from the South, New England or Hawaii.

*having worked extensively with Americans and Germans and holidayed elsewhere in Europe I'm convinced I'm culturally closer to the Europeans than to the Americans, no matter the language differences or similarities.

I love your synopsis of the scene!  I'm glad you didn't offer it earlier in the thread, or we may have missed out on all this... but it's spot-on!

[DavidG]

I have both a visible disability in that I walk with crutches and invisible disabilities in chronic pain and HMS and probably dyspraxia. To a considerable degree the visible disability is a symptom of the chronic pain and hypermobility rather than independent...

Oh, now that's interesting. I am increasingly suspecting (well, okay, this has been mentioned by a couple of PTs and a couple of physicians, so it's more than a suspicion) that my tendency towards hypermobility and lax joints plays a role in some of my physical issues. I am thinking there's likely a minor connective tissue disorder. Of course, that was there before the car accidents,

Like you I've got a mix of things going on, the hypermobility wasn't spotted until about a decade into investigating the problems (and the rheumatologist still denies I'm hypermobile -- yeah, right, everyone with severe back problems can put the sole of their foot on the top of their head), everything before that was focussed on a fall where I'd jarred my back and done bony damage to the lumbar facet joints (and c-spine damage as well, though fortunately that eventually healed when I started using crutches -- the limp without them was apparently aggravating the damage). Everyone initially thought the hip and pelvic problems were simply referred pain from the lumbar spine stuff, but when you realise that my hips are very hypermobile, though fortunately not quite to the point of dislocating, and that even my S-I joint will physically shift at times, then you realise you can't consider the lumbar spine stuff in isolation. Add hypermobility to the diagnosis and then compound it with probable dyspraxia -- my sister's a teacher, went on a course to be told how to spot dyspraxia in her kids and immediately rang me to say I hit every feature she'd been told to watch for -- and suddenly my entire childhood makes sense, not just the adult-onset disability.

at this point my training regiment encourages muscular stability, but also some kinds of hypermobility,

I never could figure out my physio emphasizing I needed to work on core stability and then teaching me stretches -- hello, hypermobile, not being challenged here!

hypermobility clearly runs in the family, if probably at a fairly low level.

Ditto, my sister's an ex-gymnast and still as flexible as when she was competing.

K claims that we are both wont to crawl off into the woods and hide at such times (though he generally does not have the injury history there)... but that has not been a particularly useful approach for grad school,

Yeah, I'm upfront when I'm in control of things, but when it's bad I just want to curl up in a hole and hibernate. Unsurprisingly that lead to lots of criticism about my communication skills at work -- hello, hurting, dyspraxic, INTP personality here!

No one ever says "How long have you been at your computer? Shouldn't you take a break now?" Well, except me, to myself.

I'm under instruction from my physio to not sit at the PC for longer than 15 minutes without a break and to physically change from one type of seat to another when I do that. Given what being disrupted every 15 minutes does to your ability as a programmer it's no surprise my career became problematical. Of course finding something you can do that's intellectual and doesn't need you sitting at a PC or a desk is problematical in other ways 

"There's two ways to pronounce I-N-V-A-L-I-D."

...which I'm quoting just because it's such a brilliant line. I *still* waste energy feeling guilty about my body not working. Not even to get into the "don't tell anyone because then they'll know you're weak and come and get you!" gremlins...

I worked on a project for USAF in the mid-80s and the project guidelines had obviously been written by someone who had gotten all of the wrong messages about being politically correct and tried to insist that the opposite of 'enabled' was 'disenabled' It's taken a long time to get to accepting my body as it is, and I've become increasingly confrontational towards people who see disability as a license to be negative about someone, in whatever way.

[txanne]

I never could figure out my physio emphasizing I needed to work on core stability and then teaching me stretches -- hello, hypermobile, not being challenged here!

Ex-dancer has a guess: strength reduces flexibility (bodies are either naturally strong, or naturally flexible). When a flexible person reduces  flexibility by gaining strength, they need to stretch it back out again. I have the opposite problem, FWIW--I've always had lots of strength and balance, but I fought for every degree of flexibility (and promptly lost it as soon as I quit dancing, alas).