And here is my thing to say:
I talk a lot about what's it's like to live with my particular disabilities, and I've posted PSAs a couple of times about Stuff Other People Could Do To Help That Are Actually Helpful To Me Instead of Just Comforting To The 'Helper'
and Why, When You Ask Me How I'm Doing, I Usually Shorthand The Truth To "Fine" Even If It's A Complete Lie
and like that. So today's lesson will not be about those things.
Today's lesson is about retraining the way you look at, and think about, and respond to disabled people. Or at least the types of disability that I have enough experience with to talk about.
So here goes:
We are not babies. We are not helpless. We are not stupid. Before you rush to help a disabled person with something that seems obvious to you, STOP. Think. Do you actually know this person well enough to know what they are capable or not capable of doing? Have you considered that, if you're wrong and they ARE capable, it is surely really fucking frustrating to have people always assume you can't and rush to your aid like you're in need of saving? Because, sure, helping your fellow man is nice, and opening doors for someone else or helping them pick up something they dropped are general kindnesses that make us Good People. But please, consider: You are probably not the first person to rush in to save the day. Probably not even the hundredth. And when everyone around you, day after day, week after week, year after year, assumes you can't do something, it stops being kind and starts being a message about how everyone sees you. It is a constant BARRAGE, and the amount of it really does matter.
Let me reframe this with an example:
If you were perfectly capable of spelling your own name and yet every single time
you ever gave your name to someone, the person standing behind you or next to you interrupted you to add, "That's spelled N-A-M-E," and then smiled at you cheerfully in a silent "you're welcome!", or patted your arm sympathetically, that would suck. Not only are they all assuming incorrect things about you, but then they act like you being grateful for it is just a given. At first, sure, you would think it was an honest mistake or this was just one isolated busybody. You would assume the best and let it go. But it kept happening. After awhile, you would start to get annoyed. You would start to just find it rude, but you would politely put up with it anyway because you don't want to seem bitchy. After all, clearly they all mean well. And then at some point you would stop politely putting up with it and snap, "I CAN SPELL MY OWN NAME, THANK YOU." And then if it still didn't stop (after all, why would yelling at one person suddenly make everyone change?), if for years this continued, it would be beyond really frustrating. Maybe even depressing, that so many people thought you incapable of spelling your own name. Maybe it would start to affect your self-esteem. Maybe you would go back to not saying anything -- not because it didn't bother you but because it had ground you down and picking a fight over it for the thousandth time seemed like a pointless waste of energy.
And what if you actually did have some slight trouble spelling your name? What if you could do it, but it took you a second to think about it and arrange the letters properly? What if nobody ever gave you a chance? What if they noticed your pause, even if it was just for a second or two, and jumped in to spell your own name for you? EVERY TIME? And smiled at you like they were so sure they'd done good and you should be grateful to them? I think I would hate having my trouble rubbed in my face that way every time. I think I would not see the intercessions on my behalf as a helpful thing, because it's not as if the me in this scenario couldn't do it herself. It's just that everyone assumed she was stupid. And I think that would seriously start to affect me.
And now imagine if it wasn't just that one thing. Imagine if the problem had many facets, many situations where that could happen, all kinds of variations on the theme. But none of them happened any less often. They ALL happened ALL the time, and it wasn't just strangers. It was your friends, your family, your lovers. Your coworkers. Your boss. It affected how well people thought you could do your job. It affected your livelihood, and it also affected your ability to fight for that livelihood. And on and on like that.
So think about that before you rush in, assuming you know what's best. If someone is genuinely in distress and nobody helps, that's a terrible thing, but it doesn't have to be either/or, black/white, act like a hero or be a villain. Learn to wait a second and see what happens. Learn to ask. Understand that there is a difference between someone in a wheelchair figuring out how to manage his or her groceries and someone choking to death in a restaurant. Sometimes being kind is saving the day, and sometimes being kind is realizing it's not your day to save.
So yeah. We are not babies. We are not helpless. We are not stupid. We just have a thing that makes life different, sometimes harder, but we are still humans like you.
And this one is especially important for the families, friends, and caregivers of someone with disabilities: If we are over the age of eighteen, then we are also adults. We want to be treated like adults who have a thing, not overgrown children who need to be managed. If you are a person who regularly helps out someone who is disabled in ways that need helping, that is very awesome of you, but do not for one second think that this is All About You. Do not for one second think that you are somehow parenting us, that you get to make All The Decisions for us and speak for us just because you're the one helping, or that you have the right to put all your stuff ahead of ours because you are doing us a favour. (Like, you know, if you offer to drive me to or from somewhere, please don't leave me stranded in your car while you also run two hours of errands. If I needed the ride, it's because I was already in pain or low on energy, etc, and the net result of your actions is that I am worse off after your help than I would have been without it. Seriously, that can wreck me enough to make me miss work on subsequent days. I completely understand that you are doing me a favour, but favours that make people miserable are not actually good. I could have found someone else if it was going to be a problem for you!)
If you wouldn't do it to a healthy adult, don't do it to us. If you cannot do it respectfully, get out. Learn to ask. Learn to negotiate, like with anyone else. You need to plan together
, in as much as you're both able, like your priorities are both
important, because to do anything less is to assume that we are not really as real as you, that we don't matter as much, that we are burdens or accessories or projects, not people just as valid and feeling as you. The fact that you are healthy enough to do more than I can and
help me out does not diminish me as a person. It does not make you better or more important and it does not turn off my brain or how I feel.
Even if I was
"helpless", even if I was incapable of feeding myself or wiping my own ass, I'd still be a person, and I'd want to be spoken to and listened to and considered as one, just like you would if I was your perfectly abled neighbour. Even if my level of mental competence was lower than the norm, I'd want to be treated like it's where it's at, at 80% or 50% or wherever, but like my feelings and personhood were at 100%. Not like it's all at zero. Because I'm still a real human being inside this body.
To conclude: You don't like being patronized, probably. Neither do we.
(Blogging Against Disablism Day 2012