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Haddayr Copley-Woods [userpic]

On understanding

September 16th, 2011 (01:15 pm)

Every wheelie has an experience similar to the one I had today: I pushed open the door to the bathroom and began to wheel through it. A coworker was standing at the sinks, washing her hands. She looked up, a totally panicked expression on her face, and abandoned her hygiene to leap in front of me, completely blocking my entrance, and to grab the door -- the door I had just opened and was passing through easily and dare I say gracefully.

Because I have mad door opening and multitasking skills, I grabbed my wheel and prevented myself from crashing into her while at the same time keeping the door open.

She stood there for a minute, hands dripping, and then realized the weird predicament she'd put me in. She, embarrassed, let go of the door and stepped out of my path. I proceeded to the stall.

Thankfully, she let me take it from there.

On the face of it, this is a kind of funny story. Awkward moment, panicked coworker, wheelchair. Hilarity ensues.

And when I tell able-bodied friends stories like this, even when I try to make it light and funny to cover up my frustration, their response is nearly always the same: you have to understand they meant well. I've panicked and done the same thing! You just don't know what to do when you see a person in a wheelchair. Do you look away? Do you look at them? Do you offer to help? Will you be insulting them?

You have to understand, they tell me. You have to understand.

I leave these interactions and the follow-up conversations feeling bad. Why am I so angry? I think. The person meant well. They just freaked out when they saw me. Anyone would.

But then it occurred to me: people are telling me to understand that my very presence is so monstrous as to be panic-inducing. I am supposed to understand that just by existing, I send people into paroxysms of fear. Surely I, with my freakish freakish use of a scary scary chair on wheels, should understand that.

I mean, you don't run into disabled people every day, after all. Folks just aren't used to us.

But there's the rub: you SHOULD run into disabled people very day. We are, after all, one quarter of the population. However; our medical, employment, economic, and transportation systems all conspire to keep disabled people off the streets and skyways -- and to confine us to our homes, institutions, treatment centers.

Panicking when you see me forcibly reminds me of how hard society has worked to keep people like me away from 'normie' eyes. I am transgressing, just by daring to go to work for a living. Or enjoy the zoo with my family. Or buy groceries. And that's hard to take.

So please don't tell me that I 'have to understand' in situations like this. Here is what I would like you to understand: going through life in a chair or on crutches, I have the same experience again and again: people pull unconsciously away from me, a disgusted look on their faces, or get that bright, false panicked look of covering up their fear. Then they just lose all rationality with their panic and trip on me, get in my way, run half a block to open a door I am already opening, grab my chair's handles to push me, or merely giggle nervously at the very sight of me, trying not to stare.

It isn't all people. On good days, it's maybe a small handful.

But how would you feel if this happened to you every day, even if it were only a few times each day? Would you begin to feel monstrous? As if perhaps you are a dangerous, infected thing? Would you begin to feel you didn't belong -- not only in that bathroom, but to the whole of the human race?

And wouldn't you start to become . . . well, angry? Very, very angry, and alienated, and sad?

Well, I know I do.

So when something like this happens, and you tell me I "have to understand," you are telling me that I need to reach out to people who are cringing away. You are telling me it is totally natural for most people to view me as a terror-inducing life lesson, or simply a contagion to be avoided.

Well, I don't think it should be natural. And I will never agree to understand.


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Posted by: mia_mcdavid (mia_mcdavid)
Posted at: September 16th, 2011 06:21 pm (UTC)

We're all terrified of sharing your fate. It's something we'd as soon not think about; like dying or mental illness having to live on the street. I understand your fury.

Posted by: sturgeonslawyer (sturgeonslawyer)
Posted at: September 16th, 2011 09:39 pm (UTC)

Why are "we" all "terrified" of sharing her "fate"? This is not death, it's a change.

I recently had a change in my health. It caused significant changes in my lifestyle. I was trepidatious, but "terrified?" No. Each of us will face changes in our health, unless we die first.

To say "we are terrified of sharing your fate" is to put haddayr into a box, to say, "your life is worse than mine." It probably isn't.

Posted by: M.K. Hobson (mkhobson)
Posted at: September 16th, 2011 06:23 pm (UTC)

So if the coworker saw you coming through the door and said, "you got it?" (with the implicit message being, "willing to help if necessary") and then went about her business, how would that strike you? OK? Or still too invasive? (I'm aware, of course, that you're not answering for every disabled individual in the world, I'm just curious about your personal response.)

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 16th, 2011 06:41 pm (UTC)

Totally frustrating in a completely different way! Presumably the one asking 'you got it' is not panicking; however, she is assuming that the person who clearly HAS got it might fall apart at any moment and need aid, because her chair has wheels.

Posted by: DebW (deborahw37)
Posted at: September 16th, 2011 06:30 pm (UTC)
applause bendy1

Oh well said! As always!

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 16th, 2011 06:45 pm (UTC)

Thank you, dear.

Posted by: Ayesha (browngirl)
Posted at: September 16th, 2011 06:31 pm (UTC)
My eye (bikergeek/tigerbright)

their response is nearly always the same: you have to understand they meant well.

Is there a non-gender-based synonym for "mansplaining"? Maybe "Ablesplaining"> in this case? I dunno.

Saying you are the one who has to understand reminds me of when I've been told that as a woman or a Black person or a fat girl or whatever I'm the one required to make the change, reach out, be graceful, finesse the situation, swallow the kindly meant insults. It sounds like another example of how the person in the marked group, or rather the group seen as marked, is the one required to make the effort; the person from the group seen as normal and/or unmarked does not have to make the effort and/or is seen as making sufficient effort in whatever effort they put forth no matter how inappropriate or inadequate.

Or am I overgeneralizing? But this is what this reminded me of.

I hope your coworker didn't drip on you too much.

Edited at 2011-09-16 06:32 pm (UTC)

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 16th, 2011 06:34 pm (UTC)

No, you are not overgeneralizing. You are totally understanding. Thank you. :big hug:

omg omg I get to use my new hug icon

Posted by: yasonablack (yasonablack)
Posted at: September 16th, 2011 06:42 pm (UTC)
Dark background Martha Jones

Hear hear! I hate the 'buuuutt they meeeeaaan well'. No they usually do not. (Like the people who are obviously doing it for karma points or whatnot).

Posted by: Tithenai (tithenai)
Posted at: September 16th, 2011 06:49 pm (UTC)
Not that kind of story

But -- you clearly DO understand. Everything about this post shows you understanding what they meant, and further understanding the context that produces the well-meaning beyond even what the well-meaners mean.

So to ask you to understand is sort of superfluous. To ask the asker if THEY understand would probably be more to the point.

Posted by: Jon Hansen (jonhansen)
Posted at: September 16th, 2011 06:56 pm (UTC)

I don't think they're really asking for understanding, I think they're asking for forgiveness.

Posted by: dd-b (dd_b)
Posted at: September 16th, 2011 06:55 pm (UTC)

I was never taught you (disabled people) were monstrous; I was taught I had a duty to help (you, and older people, and generally the less fortunate). And I wasn't taught what help was useful very much at all. If somebody is caught here, panic could result -- I have a duty to a real person right in front of me and I don't have the faintest idea what to do! Panic!

More recently I've been taught, by disabled people online and in person, that mostly I shouldn't jump in to help, unless asked. So no need to panic. But if people have missed this step (and fandom and online puts me in touch with and aware of a lot more disabled people than I ever see at, for example, work), they may still be panicking.

Yes, I certainly see how annoying it is from your end to have people go all weird whenever you show up.

(Sorry, Mia, first posted this wrong place in thread.)

Posted by: benrosenbaum (benrosenbaum)
Posted at: September 16th, 2011 07:02 pm (UTC)

From "monstrous" to "poor unfortunates needful of help" is a step up, I suppose, but you might consider that it would also be alienating to have everyone around you feeling instantly burdened, upon seeing you, with the duty of somehow personally doing something to alleviate what they imagine to be your need and distress -- especially when you experience the situation (say, moving about as you usually do) as neither.

Posted by: kellyhul (kellyhul)
Posted at: September 16th, 2011 06:56 pm (UTC)

Great post. Thanks.

Posted by: I'm nobody! Who are you? (capriuni)
Posted at: September 16th, 2011 06:58 pm (UTC)

I'm currently working on a song on this theme (on how the disabled are "monstrous" and how dare "they" insist on inclusion).

I've got a thread up in the Mudcat forum on it, now: Monster Song (?) from CapriUni -- Help? (it's going through the draft stages; I'd appreciate your input as a "monster" with a musical ear, btw).

Just giving you a heads-up that I will now post a link to this entry in that thread, and maybe quote a bit, too.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 16th, 2011 07:29 pm (UTC)

I really liked this, and I really REALLY liked that the ABs didn't have an epiphany. I am not used to using MudCat; did you post a midi file or recording that I am missing?

Posted by: Mary Dell (marydell)
Posted at: September 16th, 2011 07:56 pm (UTC)

That is some bullshit. You don't have to understand. People should learn to be fucking polite. Disabled people are not CHILDREN, except for the disabled children, I mean, and at the very least compulsive helpy people (of which I am one) should OFFER help or ASK about help, but not just leap in to take shit over. Because that's RUDE RUDE RUDE. (And I have trained myself to not offer help, either, becaus strangely if I just say HI to a person, they know they can ask for help if they so desire, and if they don't want help we can have a nice exchange of hellos).

Meanwhile I think you should trick out your wheels like this and then tell people whose calves you slice open that they just have to understand that's your natural response to people who stand too close to you.

Posted by: Calluna V. (callunav)
Posted at: September 16th, 2011 08:02 pm (UTC)

I have to say that pretty much regardless of context, the words, "You have to understand" are already going to put me well along the road to rage.

No. No, I don't. And that's not even what is actually meant, because clearly, you do understand - and in different situations I understand - all too well.

Ohhhh, we understand. We have to.

Socially diminished groups - whether actual minorities or not and honestly what does it matter whether you have 51% or not? - /always/ have the burden of 'understanding' placed on them, and they always /do/ understand. It's part of the process of institutionalized oppression: they don't have to understand us. Their world order says that we are the abnormal ones, which apparently translates to, 'you will probably understand the others because you are inundated every day with their worldview, but just in case you don't already get it, it's your obligation to master it.'

But the actual message isn't just comprehension, it's of never-ending, unlimited allowance-making. 'You have to accept what you're given, you have to accept not just that you're abnormal but that being abnormal puts an obligation on you to work double-time. You're not allowed to mind. You are required to accept the intentions and perceptions of the other, over your own perceptions and reactions, and even over practical reality.'

And you know what? No.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 17th, 2011 05:13 pm (UTC)
never-ending, unlimited allowance-making

Yep. Tired of it.

Posted by: burgundy (burgundy)
Posted at: September 16th, 2011 08:48 pm (UTC)

Up until, say, 2003 or 2004, or maybe even later, I never really thought about disability much. And then I started making friends on LJ who wrote about disability, and then I had meat-space friends who talked about it, and that got me to start reading on my own. And I don't think I was ever as bad as the "you have to understand" people, but maybe I was.

But the point is that I am much more mindful and aware now, and more politicized about it, and LJ is the primary reason why. So for what it's worth, maybe that's a very, very small silver lining? I wish people weren't jerks. I wish disabilities were not so thoroughly othered that non-disabled people freak out. I wish privileged people didn't try to put all the onus of understanding on the non-privileged. But given that they are, and they do, I'm glad that people like you are writing posts like this, because it really does make a difference.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 17th, 2011 05:13 pm (UTC)

Thanks; this is good to know.

Posted by: dryadjuna (dryadjuna)
Posted at: September 16th, 2011 09:27 pm (UTC)

2 ill-formed things:

1) Yes, we should see disabled people all over the place and be accustomed to it. BUT, we shouldn't need accustoming (apparently that's a word) to avoid treating them differently.

2) I think a huge player here is careful instruction from parents. If I can make a gender parallel here, I get male coworkers positively fainting and contorting in discomfort if they can't make sure I know they tried to open the door or offer me a chair or whatever. Just today, one wanted to make sure 'I didn't go telling people he wasn't a gentleman'. You know, because I didn't let him arbitrarily hop out of his seat when I showed up late to a meeting and instead went to get my own chair. I think a very similar teaching applies to people with visually apparent disabilities. Parents instruct their kids to always defer to them, be on the lookout to help, etc. It's totally illogical, but programmed in so young they can't get past it being part of being a good person.

Posted by: Jessie (orbitalmechanic)
Posted at: September 16th, 2011 09:32 pm (UTC)

Yes, pre-programmed children are SO much less offensive. It is so painful to see them running around all: "Hey you have a cane! How come? My shoes are green!" while their parents are like OMG STOP LOOK AWAY IT IS A SECRET THAT THAT MAN HAS A CANE.

Posted by: Tiger Lily the Ginger Cat (tigerbright)
Posted at: September 16th, 2011 09:29 pm (UTC)

Yeah, I don't get the jumping for people and getting in their way. I'll hold the door for anyone if we're passing by each other and it's a "hold the door or let it fall on the other person" situation.

There's a weekly lunch for the seniors who live in the apartment building on the JCC grounds in the conference room in my floor, and I have witnessed much oddness, from deliberately looking away from the old lady with the walker to obtrusively helping.

Besides, these are Jewish old ladies from BOSTON. If they need help, they're certainly not going to sit in the dark! :)

I had a lovely experience this morning where two nice, slow-moving older gentlemen insisted on opening the automatic door for me because I was carrying a box of papers. (I probably would have hit the button with my butt for that reason, but the not-getting-in-my-way courtesy was sweet.)

Posted by: Cinemagique (cine_magique)
Posted at: September 16th, 2011 11:19 pm (UTC)
the Dread Pirate Amy

Thank you for this post! ^_^

Yes, people being unhelpful in order to feel good about themselves for "helping" really sucks.

I use a powerchair, and the other day I was on the train with a takeaway cup of coffee (with a lid) that was still half-full in my hands. The cup was causing no bother to me or anyone else.

Random stranger: Here, let me take that cup for you, and throw it in the bin - I am getting off at the next train stop.

Me: No, thank you.

Random stranger: Really, it's no trouble

Me: No, thank you.

Random stranger: Really, it's no trouble

Random stranger: starts walking towards me to take my coffee cup

Me: Holds my hand out in front of myself in a blunt "Stop!" gesture.

Stranger: slows down a little, but doesn't back off.

Me: No, the coffee is still half-full, I am going to finish drinking it when I get off the train.

Stranger: reluctantly gives up.

It was clear that his "Help disabled people" program had kicked in, and his need to *feel* that he was being helpful, over-rode anything that I said or did.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 17th, 2011 02:16 am (UTC)
wtf who


Posted by: Cinemagique (cine_magique)
Posted at: September 16th, 2011 11:22 pm (UTC)
the Dread Pirate Amy

Dave Hingsburger wrote about this recently, as well:

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 17th, 2011 05:15 pm (UTC)
typing wheelchair

Thank you for this link; an excellent post.

Posted by: isallybananas (isallybananas)
Posted at: September 16th, 2011 11:50 pm (UTC)
You have to understand

This is Minnesota, and we aren't supposed to be mad at all, at all. ;)

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 17th, 2011 02:16 am (UTC)
Re: You have to understand


Posted by: A Wandering Hobbit (redbird)
Posted at: September 16th, 2011 11:57 pm (UTC)

"Oh, I do understand. I understand that s/he was being an asshole. What I don't understand is why you're telling me I should let people mistreat me."

Posted by: That Wisconsinwriter chick (wisconsinwriter)
Posted at: September 16th, 2011 11:59 pm (UTC)

Please come work with me. We would totally frickin rock the house.

Posted by: Thida (waterowl)
Posted at: September 17th, 2011 01:01 am (UTC)

If someone said to me, "you have to understand." I'd have said "Yes I can see why someone would panic if they didn't have a towel."

It is like mansplaining or whatever, but with the added bonus that the "polite thing to do" is offer aid to you poor helpless crip without actually asking what you need.
Plus the defense of "oh we fear you, because we don't want to become you. Nothing personal."

As you can see, I often deal with it with humor.

Posted by: LdDurham (lddurham)
Posted at: September 17th, 2011 02:16 am (UTC)

Ok, I've been off LJ for awhile, so I might be missing a part of the greater story, here. But I want to understand.

I open doors for people. I don't break my neck to try to help someone who has clearly got things under control. But if I see someone with a mobility-assistance device coming toward a door I'm sitting/standing by, I'll open it. I'm there, I'm not doing anything, I'll be polite and helpful. Not for any karmic brownie points, but just 'cause I figure I can be helpful. Are you saying that's wrong to do?

I used to be the aide for a woman with CP who used two canes to walk. She was always happy to have someone open the door for her. She enjoyed the brief interaction with the person she viewed as kind enough to offer her help. She didn't need the help. She could get the door on her own (I assisted in other capacities). But for her, it seemed to be just folks being polite. I was an aide to another young woman who was in a wheelchair. Again, she took a moment to smile and make a brief contact with the person who was jumping up to do something for her. Both these woman were very confident and lived on their own.

I wonder if the impact of others' help is viewed differently for people who were born with a disability, versus those that have it occur to them later.
But that doesn't really help me to know when to be helpful and when not to be. How do I know when a person will appreciate, or at least patiently accept, my actions? Or will they see it as me thinking they are incapable of living a life without my few seconds of interference?

However, telling you you need to understand is going too far. I assume they mean it to be more of a plea for patience for those of us who are trying to be helpful without being hindering or insulting. Their wording, though, isn't very polite. And hopefully my own wording hasn't come off as more than my earnest desire to better understand how to be a better human to all sorts of people. Because it seems that even if I do it from a place of just seeing someone needing a little help to make their life easier (picking up a dropped paper, offering a pen when someone is searching for one), it may be interpreted as believing someone on wheels is a monster or an idiot. And that makes me sad to think anyone would assume that is what I am thinking.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 17th, 2011 02:35 am (UTC)

I'm confused. The situation I described was a woman going out of her way to BLOCK THE DOOR I was already halfway through, in her panic. How does this relate to your situation?

FWIW, in the situation you describe -- which is again not remotely the situation I just described -- the way you know if someone would like help with a door is that you ask them.

Posted by: Stone of stumbling and rock of offense (wordweaverlynn)
Posted at: September 17th, 2011 09:43 am (UTC)

It's horrible and wrong. People need to learn -- preferably in childhood, but *sometime*, eventually -- that human beings come in all sorts of bodies, and that every one of us uses some sort of electronic/mechanical aid. Your use of a wheelchair to help you get around should be no more shocking or distressing than my use of a cell phone to help me talk to people 3000 miles away.

I'll link to this -- everybody who is temporarily able-bodied should read it. Then they can understand.

Posted by: gailmom (gailmom)
Posted at: September 17th, 2011 03:07 pm (UTC)
tree dancer

Thank you so much for this. As so often happens, you manage to say things I can't find the words for.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 17th, 2011 05:16 pm (UTC)


Posted by: Killer of Sacred Cows (griffen)
Posted at: September 17th, 2011 06:40 pm (UTC)
yes that

As a disabled fat person, I completely identify with this. I have both physical and neurological handicaps (hard of hearing, arthritis and high-functioning autism) and to top it off, I'm overweight. I know about the moue of disgust or the terrified look or the freaked-out panicky bubbly smiling person. I hate them all. I'm a person, dammit, not a public obscenity or a freak show.

Thank you for saying something that needed to be said. Found you through a friend, and glad I did.

Posted by: Anissa (AnissaFord)
Posted at: September 17th, 2011 06:46 pm (UTC)
i have really bad eye contact

so I don't look at people. handicapped or otherwise. my son is autistic and mentally retarded. yes, there is a conspiracy to hide the mentally disabled from public view and from participating in public events.

Well said. As far as the awkward bathroom situation. It's like the guy who holds the door so women can pass through. Only to brush up against his body. The wise woman refuses.

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