Boundaries

[MadGastronomer]

Yes, that.

[DavidG]

There's also, of course, the issue of personal preference. Some folks with disabilities are perfectly comfortable discussing it, and are interested in doing outreach. Others are not.

It very much depends on how I'm feeling. If I'm trying to control my pain levels by ignoring them, then talking about my disability is actually going to hurt. If the pain levels are under better control then I'm quite capable of discussing the details of how it affects me (which is essentially what I'm doing here). But because we don't come with labels saying 'I don't mind talking about disability today' you really need to let the disabled person take the initiative. Beyond that it's my experience that people don't actually want the real details, they want something that confirms their comfortable misconceptions. I've had people who've clearly concluded that I'm lying when I talk to them about my normal pain levels. Long term pain is so far outside their experience that they can't imagine living with it, therefore I can't be living with it. QED.

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'.

[DavidG]

I wish I'd gotten serious about asking to take written exams at a computer sooner than the last exam of the last course of my graduate career... and that's just ergo issues, because writing by hand is harder on me than typing, and all my writtens were turning into endurance sports.

I actually had a final pre-A Level school report that said 'he'll pass, provided they can decipher what he's written". Everyone knew my handwriting was an issue, but we were a decade or more too early for anyone to take that knowledge a step further and start thinking about dyspraxia and hypermobility and reasonable adjustments. Fortunately my results were good enough to get me where I needed to go, but I wonder how much better they might have been if I'd been able to type my papers and the examiners to read them without struggling. Knowing what I know now, some of the treatment I got at junior school in particular starts to look much more like abuse than the actions of concerned teachers. Idiots, particularly idiots in education, who insist that tidy handwriting is essential or admirable, despite the evidence that a significant part of the population will have physical difficulty with it, is something I get very angry over.

I just started a German course, there's not much writing involved, but the nurse I'm sitting next to took one look at my scribble (printed scribble at that!) and asked 'Are you a doctor?

[DavidG]

But if I met you more than a few times, as friends, I'd ask eventually.  Mainly for practical reasons:  if you've had this problem for more than a few years (or all your life), you don't need help and I shouldn't offer, and you'll ask if you need something.  But if it's a recent development, you're probably still adjusting, and I should be a little more thoughtful. You know?  Like if you were born with only one leg, you already know how to manage stairs and grocery bags and revolving doors and so on, but if you just lost your leg in an accident six months ago I should be a little more alert to stuff like how good your balance is and whether the revolving door totally freaks you out or not.

From my PoV, I'd prefer you to let me make the choice to bring things up or not, and if I need help, I'll ask.

[Triffid Breeder]

Er, speaking as an averagely able-bodied person, I have to say that I hold doors for just about everyone. It's just not polite to let a door slam in someone's face.
I always let go of it once they've got it, though. No point in blocking the doorway.

[DavidG]

I have to say that I hold doors for just about everyone. It's just not polite to let a door slam in someone's face.

I'm not talking about normal door-holding behaviour. If it was just that then it wouldn't be a problem. The problem is people insisting on opening doors even when I ask them not to, or darting around from behind me to open a door I'm perfectly capable of opening myself. In one memorable case someone hurled himself at a door from three steps up a staircase, while heading away from it. It was sheer luck he didn't flatten me. Then once the door is open, people insist on holding it and waiting for me to go through, even though they've seen me deliberately put my crutch against it to hold it in place and I've said 'It's fine thanks, I've got it now' or words to that effect. Or think about a door that opens away from you, normally people only hold doors that open to the side they're on, with me they try to lean through the open doorway to hold it open on the opposite side, which means they're taking up half the doorway with their body and expecting me to squeeze through what's left, even though I need much more space than usual to get through. There have been times I've explained to people that I need the full width of the door to get through and can't because they are in the way and they've made if clear that they think I'm being ungrateful and unreasonable.

It's actually very bizarre to see and definitely not normal, and other friends with crutches report exactly the same experience and annoyance, so it's not just me being picky.

[Triffid Breeder]

If it was just that then it wouldn't be a problem. The problem is people insisting on opening doors even when I ask them not to, or darting around from behind me to open a door I'm perfectly capable of opening myself. In one memorable case someone hurled himself at a door from three steps up a staircase, while heading away from it. It was sheer luck he didn't flatten me.

Sounds like extreme training for the Olympic door-holding event. And yes, very unhelpful. Inconsiderate, even.

(I am British. We understate.)

[Emma Bull]

It's frequently mentioned as one of the reasons for buying colourful crutches -- trying to give people a hint that no, we haven't just sprained an ankle.

Is it inappropriate, in that circumstance, to burst out with, "Awesome red crutches! That's a great color!"? Because I know myself well enough to realize that would come out my mouth if I didn't control myself.

[Jezabella49]

I spent a year and a half on crutches after breaking my leg through the reconstruction, so I have some appreciation of the difficulties attendant.  I don't remember how I dealt with people on crutches before.  Nowadays, I always ask if assistance is needed before I go out of my way to help.

Oh, yes, I do hold the door for someone coming behind me if the door opens in the direction we're going, and I won't be in the way.

My daughter was on oxygen for the last 9 years of her life.  She was an outreach person most of the time, especially if it involved a curious child on the street or in a restaurant.  I let her handle it her way.

She might see a child trying to look, with a parent admonishing them not to stare.  She would walk over, and introduce herself to the child, then explain, "I was born with a heart defect. That made my lungs get sick so they don't take enough oxygen from the air like yours do.  This (pointing at the tank) is oxygen to help me keep going," or something reasonably similar, and then ask if the child had any questions.  Some of them would get very shy, and shake their heads.  A few had questions, and a very very few asked if they could touch the tank.  She would answer, or let them touch.

She had Pulmonary Hypertension, which isn't terribly common, and often has sufferers spending years of going from doctor to doctor before they get a diagnosis other than, "you're fat,"  "you need to get more exercise," or "you're just doing this to get attention" which might come with a referral to a mental health professional.

[eschatonic]

But if I met you more than a few times, as friends, I'd ask eventually.  Mainly for practical reasons:  if you've had this problem for more than a few years (or all your life), you don't need help and I shouldn't offer, and you'll ask if you need something.  But if it's a recent development, you're probably still adjusting, and I should be a little more thoughtful. You know?  Like if you were born with only one leg, you already know how to manage stairs and grocery bags and revolving doors and so on, but if you just lost your leg in an accident six months ago I should be a little more alert to stuff like how good your balance is and whether the revolving door totally freaks you out or not.

From my PoV, I'd prefer you to let me make the choice to bring things up or not, and if I need help, I'll ask.

I get that, and I've been told off before for asking personal questions.  But I think we're back to that regionalism thing here, because I'm from Los Angeles and it really is OK here to ask that kind of thing.  Not asking actually sort of implies that you don't care.  And not in the good way of "your disability has no bearing on our friendship."

[DavidG]

Is it inappropriate, in that circumstance, to burst out with, "Awesome red crutches! That's a great color!"? Because I know myself well enough to realize that would come out my mouth if I didn't control myself.

No more inappropriate than to say 'Ooh, gorgeous heels!' when someone turns up with a new pair of shoes. It's a fashion statement after all! The inability of most of the health profession to produce stylish sticks, chairs and braces is a regular complaint on disability fora.

[DavidG]

she was an outreach person most of the time, especially if it involved a curious child on the street or in a restaurant. 

Yeah, kids get a bye on questions. Parents saying 'don't stare' or slapping them for saying something (as happened to a poor kid who saw me and asked 'why does his ankle go over like that') are teaching kids that there's something scary and abnormal about disability. If we can teach them it isn't scary, just a little different, then we can save ourselves a lot of hassle in the long run, so that outweighs the normal privacy issues.

[DavidG]

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?

[Elizabeth Bear]

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?

[ArtemisHi]

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?

Maybe this is rude, but I've always assumed that if I ask *anyone* a question that isn't ok, it's on them to let me know. I have worked with a large number of visually-impaired and legally blind people, and none of them have expressed discomfort with my asking if they needed assistance, or how they were doing, or even (with ones I became friends with) what type of blindness they had. I don't think you're talking regional differences at this point, but personal preference of the person with the disability.