Wednesday, June 25, 2008

Help, Accommodation, and Non-Standard Needs

One of my regular volunteer activities includes mailing books to Methuselah Foundation donors. I don't mind this task at all, though the transaction e-mails (I get the receipts in my inbox every day) can certainly pile up over time -- it's pretty straightforward, which makes it a sustainable activity given that my day job takes up the vast majority of my waking hours during the week.

But this post isn't about volunteer activities, per se -- that's just background. What I'm really here to write about today is the concept of assistance -- specifically in light of social perceptions regarding what kinds of help it is and isn't okay to need (or refuse, for that matter).

Since I get alternate Fridays off work, these Fridays present an opportune time for me to print address labels and mail out books. There's a mailing centre in a small strip mall about a quarter mile from my apartment, and I usually go there to send things off. Perfectly reasonable, right?

Well, I certainly think so, and so far nobody has tried to stop me from doing this, but I have run into some rather odd responses and attitudes in the course of this ongoing mailing activity. If I have a lot of books to send (more than 15 or so), I will wait until a Saturday or a convenient evening when my partner can provide car services (and nobody ever bats an eye at that; it's perfectly reasonable, I guess, to commandeer the trunk of a car and another person's arms for transporting books) -- but if I only have a few and decide to transport them on foot, things are very different.

For some reason, people seem to think it tremendously odd when I walk to the postal centre carrying the books, usually in two reusable shopping bags (one in each hand). I can carry up to around 15 books this way, and the way I see it, it's a win-win situation: I get a nice dose of much-needed exercise, and the books get mailed.

And yet, quite often when I'm walking down the street, I get people yelling out their car windows, honking their horns, and (if they are pedestrians) running up to me and asking if they can help. I'm not totally certain that the yelling and honking are directly correlated with my carrying the bags of books, as people have been yelling at me out car windows for practically as long as I can recall for some reason, but it definitely seems to happen more when I'm carrying stuff.

As for the pedestrians who offer to help, what amazes me about that is how hard it can be to fend them off at times! It's not enough to say, "No thanks, I'm fine", apparently -- this kind of response will more usually garner me an "Are you sure?" than a respectful retreat.

The mailing centre employees sometimes express concern as well -- I think they've gotten used to me at this point, but initially I had to reassure them that no, I wasn't being "abandoned" to carry the books unaided. I have been encouraged in no uncertain terms to solicit rides and pretty much insist on being helped, to the point where it's clear to me that it must be quite socially acceptable to get assistance carrying objects (perhaps especially if you happen to be 100 lbs and female). Not only is it not considered sad or tragic that I can't carry 30 books at once -- I apparently wouldn't be considered "burdensome" if I were to essentially demand help with carrying 15 books, even though I can easily manage 15 books on my own!

This sort of thing happens to me at work as well.

In my job as an electromagnetics engineer, I deal with a lot of weird-looking hardware, some of which is heavy, and some of which isn't. I've also been carting around a lot of empty boxes and piles of packing material lately, as we've been getting some nifty new items in. Anyhow, as a result of all this carrying-to-and-fro of Stuff, I've noted some interesting phenomena. Thankfully, there aren't any automobiles zipping through the building filled with occupants who like to yell out windows, but I still get a lot of people trying very hard to help me.

And...well, while I quite like having help when I'm trying to get a 90-pound amplifier onto a shelf, I am not so much about having people randomly hold doors open for me or try to grab light and easy-to-carry items out of my hand when I'm perfectly fine carrying them unaided. No, I'm not on some "macho woman" trip -- this has nothing to do with gender, at least on my end -- it's just that if I am in the process of trying to push a cart or open a door or even carry an empty box down the hallway, adding "human interaction" to the task tends to turn it from something perfectly manageable into something ridiculously confusing.

Seriously -- if I am carrying something or trying to open a door, and you rush over and either try to take the thing from me or manipulate the door yourself, you are likely to see me either dart away like a spooked squirrel, wave my arms, squeal, start repeating some phrase over and over again (usually something like "Get back! Get back! Just get back!"), or responding in any other number of (most likely) unexpected and odd-seeming ways. I do not react this way "on purpose", nor do I mean to be or seem rude -- it's just that I have a very sharp breakpoint in my response curve as far as navigating multiple environmental/perceptual variables goes.

Anyone who is around me long enough will probably see me react as described above at some point. I don't lash out and attack people physically or anything (my reactions tend far more toward "flight" or "freeze" than toward "fight"), but apparently I do manage to alarm, scare, or even offend people at times with my reactions to certain situations. I've gotten better at dealing with this, and at avoiding it in the first place over the years (particularly since finding out I was on the autistic spectrum), but it still happens from time to time.

Anyway, though, the thing that made me want to write this post was the realization that there seem to be:

- Certain kinds of help that are okay to ask for
- Certain kinds of help that people seem to think others are obligated to seek or accept
- Certain kinds of help that are almost impossible to explain the need for
- Certain kinds of help that don't seem like they require much (if anything) in the way of money or materials, but that people aren't supposed to ask for or need.

As far as I can tell, nobody thinks it's bad or weird for me to ask for help carrying heavy objects. In fact, if anyone so much as sees me trying to pick anything up or carry something, they are apt to not only offer help, but practically insist on giving it, even if I try my very best to make it clear that (a) I don't need it, and (b) they're making things more difficult for me by continuing to push it on me.

This also happens in other circumstances -- e.g., once I was in a software training class, and for some reason the instructor decided to single me out as needing "special instruction", so he stood behind me and kept pointing at things on the screen and telling me out loud what to do. I found this incredibly annoying, as I'd been doing fine on my own (I'm quite good at figuring out software interfaces) and he was distracting me with his pointing and commentary -- and I ended up having to tell him multiple times to go away and leave me alone before he actually did. I didn't need or want his help, and there were a zillion other things he could have been doing rather than micromanaging the contents of my screen, and yet, he didn't exactly rejoice at being freed from the "burden" of helping me.

On the other hand, often when I try to explain things that actually would help me (e.g., "If I'm opening a door, please don't run up and try to open it for me, because you will end up messing with my visual perception and motor planning"), people either tend to not believe me, not understand what I'm asking, or act as if I must be trying to impress them with my self-reliance or physical door-opening (or object-carrying) prowess. Which I'm not. Sometimes, quite frankly, the best way to help me is to avoid helping me, but this is extremely difficult to communicate to others.

And then there's the matter of "accommodations". I was authorized to receive some accommodations in school through the Disabled Student Services department, such as extra time on tests in college, and the opportunity to take tests in a quiet, less crowded room. When I was actually able to wrangle the logistics, I definitely did better on my tests (I still don't think I'd have been able to graduate without the accommodations I did have), but sometimes the teachers I asked to sign my test authorization forms reacted so negatively that I just didn't have it in me to push the issue. Some of them said things like, "It's too inconvenient for me to have you take your test outside the regular class period" -- and not having any real self-advocacy skills at that time in my life, I tended to just back down upon hearing that, figuring that I had "no right to special treatment" or even supposedly "reasonable accommodations" if they were truly that much of a hardship for my teachers.

If I were in school now, I'd be a lot more assertive. I used to feel as if I had to be "totally self-sufficient" otherwise I didn't even deserve to exist, and this led to a lot of really nasty periods of utter self-loathing, guilt, and "pushing" to the point of putting my health in danger (at one point in college I took a urine test and was told that I was "digesting my muscles and internal organs" due to not eating enough). I don't feel that way now, and in many ways I am a lot more "self-sufficient" than I used to be -- go figure.

I've had so many experiences of being offered help (help that clearly involved people "going out of their way") that I didn't need that anyone who tries to tell me that accommodations are a resource problem (and that people who don't want their differences "cured" are somehow selfish or lazy or worse) immediately goes on my "this person is lacking in clue" list. So often, when I see or hear of people complaining about having to accommodate someone else's non-standard need, it strikes me as a complaint about having to shift or disrupt the status quo rather than a rational complaint about a true and unfair hardship.

I really wish people would at least consider this before making knee-jerk arguments about nonstandard people being "resource drains".

Humans help each other. That's what we do as a (hopefully) civilized species -- we're supposed to have risen above all those harsh, ruthless "laws of the jungle" at this point! And sure, sometimes this is how things end up working out, as cooperation clearly exists -- but I still think a caveat is warranted regarding assuming you can just offer the same kinds of help to everyone and have it actually be useful to them.

Bottom line: Help shouldn't be about getting someone's gratitude or feeling like you've fulfilled your token obligation -- it should be about actually, you know, helping someone. Personally, I like it when people let me know when my actions aren't actually helping them -- I'd much rather them be honest than pretend to appreciate something they don't. And the fact that some people need different kinds of help than others doesn't mean that they are somehow objectively "diseased" -- it just means that the definition of what meaningful help is needs to become more flexible in order to create a more welcoming society for all.

8 comments:

jfehlinger said...

> [I]f I am in the process of
> trying to push a cart or
> open a door or even carry an
> empty box down the hallway,
> adding "human interaction"
> to the task tends to turn it
> from something perfectly
> manageable into something
> ridiculously confusing. . .

I too dislike unsolicited offers of
help, and my kneejerk reaction
tends to be to reject it (sometimes
not very politely) even when it
might have been, well, helpful.

Asking for help is always my plan
of last resort, never planned for
at all, and only resorted to out
of absolute desperation.

I tend not to like being asked for
help by others -- especially
strangers (like folks asking for
directions on the street) for a
number of reasons -- I tend to
dislike all human interaction;
I tend to go around in a bit of
a fog, and be startled when
somebody penetrates the bubble;
I tend not to think well in
stressful situations.

I tend not to notice, or notice too
late, when people need help but
aren't asking, like when somebody's
struggling with a door.

Nevertheless, I tend to feel
guilty for being so useless, even
while rationalizing that many
people (like you) would prefer to
be left to their own devices
unless they specifically request
assistance.

I too am annoyed, to the point of
contempt, by folks who **jump** to
my assistance, only to get in the
way. I **hate** "Alphonse &
Gaston" routines.

I tend to be so paralyzed by these
conflicting impulses that even in
a pretty clear-cut case of my
assistance being called for, I
stand around like a buzzing
Robby-the-Robot, "locked in a
sub-electronic dilemma".

Nevertheless, I'm sometimes able
to snap out of it in time to hold
open a door for somebody pushing a
baby stroller. ;->

AnneC said...

jfehlinger said:

I too dislike unsolicited offers of
help, and my kneejerk reaction
tends to be to reject it (sometimes
not very politely) even when it
might have been, well, helpful.


Yeah, I do that as well sometimes. Practically as a rule, my initial reaction to someone trying to get my attention (or get involved in whatever it is I'm doing) tends to be...not what people expect. Similarly, if someone asks me a question out of the blue, the first response I give is likely to be much less accurate (to the point of totally failing to make sense on occasion) than subsequent responses when I've had time to process things a bit.

(Which, of course, got me into no end of trouble growing up, as a lot of people seem to operate under the myth that a person's first response is most likely to be the "honest" one, whereas subsequent responses are more likely to be fabrications.)

Asking for help is always my plan
of last resort, never planned for
at all, and only resorted to out
of absolute desperation.


Same here.

Though when I was little I remember there being a few things that I always asked for help with by default -- not even necessarily because I needed help, but because I'd been taught to say the help-requesting words in conjunction with a particular activity and I didn't realize I even had a choice (nor did I generalize that asking for help with Thing X meant that asking for help with Thing Y was also an option). I remember one day, at around age six, asking for help with something in this category, and being told that I could do the thing myself (which, it turned out, I could), and finding this to be a bit of a revelation.

Mostly, however, I'm a raging do-it-yourselfer and always have been. As a child I did a lot of climbing on shelves and stacking furniture so I could get at things I wanted, and as an adult, my attitude is similar, though my actions are decidedly less monkeyesque. :) But at this point I've also recognized that needing help in some areas is nothing to be ashamed of -- the thing I still tend to struggle with is how to describe the kinds of help that benefit me the most.

(My partner is amazingly good at assisting me in these areas, though, and I am tremendously thankful for this -- I don't know how I managed to find someone who understands that sometimes I need to be physically steered out of crowds and away from moving vehicles in parking lots, and that no, my having a job, etc. doesn't mean I "can't possibly" need help with this sort of thing!)

I tend not to like being asked for
help by others -- especially
strangers (like folks asking for
directions on the street)


LOL, I dislike being asked for directions as well, but mainly because I am terrible at giving directions! It's especially bad if someone in a car stops and asks how to get to [location], as since I don't drive myself, I tend not to have a clue regarding freeway connections. (When you walk around as a pedestrian a lot, you navigate in different ways than people who are always in cars do.)

I tend to go around in a bit of
a fog, and be startled when
somebody penetrates the bubble;
I tend not to think well in
stressful situations.


Gee, are you sure we're not related? :P

abfh said...

Last night I saw an amusing advertisement by a barbell company. Two guys were struggling to lift some heavy weights onto the back of a truck. Then they noticed a pretty girl carrying books, put down the weights, and rushed over to offer to carry her books. The girl, who turned out to be a champion weightlifter, gave her books to one of the guys and thanked him sweetly. Then she did a perfect clean-and-jerk and put the barbells in the truck.

:)

AnneC said...

abfh: Hehe, that does sound rather amusing.

shiva said...

I am *exactly* the sam as this, both in regard to being offered help and being asked for help.

In fact, i was just thinking about the opening-doors thing (having read a discussion of it in a side-thread to a discussion about feminism somewhere on Livejournal). I absolutely hate having doors opened for me - because, for *some* of the common ways of holding a door open for a person, i literally *cannot* go through the door until the person lets go of it. (I think it's an interaction of my spacial perception/co-ordination issues and my anxieties to do with boundary-crossing/personal space.) So, the person *thinks* they are being helpful by holding the door open for me, but in actual fact they are blocking me from getting through the door... which it's pretty much impossible to explain to someone without deeply offending them. It's also deeply offensive (apparently) to stand and wait until they let go of the door, so in such circumstances i actually often walk away in a different direction, and either give up on going into that shop (or whatever), or come back to it later...

There are lots of similar things, like people apologising for brushing against me in the street, which distresses me *far* more than the unintentional physical contact (which, much of the time, i wouldn't even *notice* if the person didn't draw attention to it by apologising for it) - but the apology forces me to acknowledge the person as a person, which can break my train of thought so completely it throws off my whole day. Actually, i probably need to write a post about all these things...

Another one is if someone offers to help me cook a meal, or similar - i always say no, because, even though cooking a meal for several people, involving several things cooking at once, is somewhat stressful, co-ordinating instructing someone else what to do *and* cooking part of it myself is considerably more stressful than doing it all myself. People see me rushing around, "looking stressed", and think they are helping by offering to help, when in fact dealing with their offer *in addition* to what i am already doing will only stress me out more...

I have to say that your carrying bags one seems very odd to me, tho. In England, i don't think i would ever get those kind of unsolicited offers for carrying heavy bags down the street, and tho i'm a 5'11" bearded man, i really don't think a 5'2" woman (if she wasn't visibly disabled) would either. (I mean, i'd offer if it was someone i *knew* who i ran into in the street, and we were going in the same direction, but a stranger? Absolutely no way - in fact, a stranger offering to carry someone's bags in the UK would probably be presumed to be trying to steal something...)

Maybe it has something to do with the US's car culture? I am always horrified by how strong the assumption seems to be in the US that *everyone* drives, and that walking down the street is something undreamed-of - perhaps people assume your car has broken down or something?

AnneC said...

shiva said:

There are lots of similar things, like people apologising for brushing against me in the street, which distresses me *far* more than the unintentional physical contact (which, much of the time, i wouldn't even *notice* if the person didn't draw attention to it by apologising for it)...

Well, in my case I do notice when people brush against me, but I definitely don't like it when they make a big deal out of it. A quick "Oh, sorry" is fine, but if it goes beyond that, I tend to lose brainspace pretty rapidly.

The last thing I need in an overloading situation (like walking on a crowded street or in a busy hallway) is someone deciding that because they've brushed me, they need to touch me even more (usually via grabbing or patting my shoulders and/or arms) and try to strike up an impromptu conversation about the whole thing. My impulse in that situation is to struggle, push, and dart away as fast as I can away from that person.

you said: I am always horrified by how strong the assumption seems to be in the US that *everyone* drives, and that walking down the street is something undreamed-of - perhaps people assume your car has broken down or something?

Oh yes, I wrote a whole post about being a non-driver in the midst of the US car culture...it's definitely an interesting experience at times (though, I dare say, a valuable one, as I get a first-hand look at a lot of the assumptions most people probably don't even realize their culture holds).

It's almost funny sometimes how people seem to be practically grasping at straws for reasons why it's bad to be a non-driver over here -- sometimes I think I probably frustrate people with how little I care about playing status games. :P

AnneC said...

Clarification: in my last comment when I mentioned people "grasping at straws", I wasn't talking about you or other non-drivers commenting about the dominance of car culture in the US.

Rather, I was referring to drivers over here who like to go on about the "worlds of opportunity" opened up by driving, as if presuming I didn't get the memo on how being able to drive your own car means you can go to the store whenever you want without having to walk or take the bus or get a ride from another human.

I mean, it's all well and good for people to talk about the reasons they like being able to drive, but my failure to see those reasons as sufficient cause to feel sorry for myself for not being able to drive should not be taken as a sign that I'm somehow weak-willed or complacent. I just have other priorities.

Michael Anissimov said...

Car-addicted culture.