I've been trying to have a good attitude about people opening the door for Anna but today it all boiled over and I almost told someone, "Excuse me. Do you have any idea how rude you are and how stupid you look? Just leave us alone."
This is a little extreme since people are "just trying to help," but it is SO annoying and stressful. Here's the situation: Anna can walk, but she needs someone to walk with her and she also needs her wheelchair nearby. So if only one person is with her, she just rides in the wheelchair. She can't operate a chair so she is just passively riding.
One thing Anna can do is press buttons with prompting and support, so her parents always have her press the buttons for her chair lift, elevators, and doors. They taught me to have her do it and it made sense to me because a)pressing buttons is an important skill if all your communication devices involve pressing buttons, b)it's something active Anna can do to help herself get around.
We go to Starbucks a lot and they have a closed door with a wheelchair button that opens the door. This should be a good opportunity for Anna to open the door for herself, right? WRONG because just as I move Anna into position to press the button, someone leaps up to open the door for us.
Why does this happen? A cursory glance shows that I am putting Anna's chair close to the button, moving her arm in front of the button, and encouraging her to press the button; and she is extending her finger to do so. It's obvious that our goal is for her to press the button and it is not helpful to take away her opportunity to do that. Yet people rush in to press the button or open the door out of some instinct of "that's what you do for disabled people."
I know they're just trying to be polite and for some people in Anna's neighborhood, she is a familiar figure who they want to be friendly to. Plus, I'm sure I've done something similar to a wheelchair user in the past. I honestly have tried for so long to not resent people for opening the door for us, but today it hit me: every trip to Starbucks has become a race against the Door Police.
All I want is for Anna to get to perform a skill that she can do. But every time we enter or exit Starbucks, I take in the situation and see if people are close enough that they can immediately leap in to save us, or if it will take them a minute to get over to the door. If they're close to us, Anna doesn't stand a chance--she just isn't fast enough to push the button before someone puts an end to our imaginary predicament. But if people aren't that close to the door, Anna might be able to push the button!
If Anna pushes the button in time but pushes it too softly for it to work, there is no way she'll have time to try again.
I always feel disappointed when Anna doesn't get to open the door herself--frustrated that the button is not more sensitive or that I didn't move her hand more quickly before people noticed what I was doing. But why should we have to rush or get it right on the first try? If people would actually look at us instead of assuming we need help because Anna's in a wheelchair, then she would always get to open the door. Instead she doesn't get to most of the time, but if I ever expressed how annoying it is that people won't let her do it, I would be the asshole for not appreciating their good intentions.
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This is good to know. I tend to get doors for everyone, if I'm in the right place to do it, and it never occurred to me that opening a door oneself is a Good on its own.
ReplyDeleteI know you might not always have the verbal readiness to do this, but it seems to me that people would probably react well if you just told them what you wrote here, that it's helpful for Anna to practice pressing buttons. I know if someone told me that, I would stand aside and let the person open it on their own.
Though maybe not, if they are still trying to get the door when she's in the middle of opening it herself.
My favorite thing about your posts has always been that they make me really really consider things in ways I hadn't thought to prior. And I guess that's just another way of saying I'm prone to thoughtlessness, but I have a question, Does Anna want to push the button? I know she's been taught to, and that you've been taught to have her do it, and I get all the reasons why. But it wasn't clear to me whether this was something Anna wanted to do for herself, or if it's therapy for her.
ReplyDeleteThat's a good question, a lot of Anna's desires are a big mystery. She really likes Mardi Gras beads, ribbons, the frozen food aisle at Whole Foods, and a few other things but she also does things like refusing food and then if we make her try it she laughs and looks happy, or acting serious/bored when she's with a friend and then laughing and communicating she had a good time as soon as the friend leaves. So sometimes we have her do stuff because we think she might like it.
DeleteIn my opinion, pushing the buttons might be something that makes her day slightly more positive/interesting because she gets to be more independent (which is important to her I think) but it's kind of the same as just running my mouth off when I am with her because it's possible that she might be following and entertained by some things I say--maybe she doesn't understand/isn't interested and it's not like her day would be bad if I didn't talk to her, but it's just something I think you might as well do.
Also she is pretty clear when she doesn't want to do stuff (pushing things/person away, making herself hard to move, obviously angry, etc.) and she never acts like that about buttons, so she's certainly willing to push them.
I don't know if I would call it "therapy" even though it is practicing a skill but maybe that's just semantics.
It's tough to know what to do - but if you have her in a place where she can push the button, then that should signal to people that it's HER button push.
ReplyDeleteI know my kids always liked to push the button - shy not Anna?
OTOH (there's always an 'other hand'), I find that many of the buttons for opening a door are placed far away (because that's convenient for installation, not users), and I really resent the extra steps on days when walking is painful - and there are always clueless people who could have made my life easier if they'd just been normally courteous (nothing special just for me) and not let the door slam in my face because I'm slow and using a walker.
I think, "Please let Anna push the button herself," or "Thanks, but she'd rather do it herself," should work with most people. If it's a regular problem, smile (important), and then let the door close, get Anna ready again, and take your time. I assume you aren't in such a hurry that you have to rush.
Even well-intentioned people need to learn - and each person with a disability may need something different.
It's the better version of the Golden Rule: "Treat others as they would like to be treated." Harder - but ultimately better for all concerned.
Keep thinking, keep writing - I learn something every time I read your posts. Thanks.
ABE
That's a really good idea to just ask them to close the door and then have Anna push the button. Then Anna will get to press the button and the person will understand without me having to seem mean or angry.
DeleteI haven't noticed the buttons being far away but there are some places that Anna and I go where I feel like they would not be accessible to a wheelchair user traveling alone (like I have to lift up her chair to get it through a supposedly accessible entrance etc.)