As a disabled person, I have experienced failure a lot in my time. I have experienced the kind of failure that can be turned into success by fine tuning the failure. I have experienced the failure that comes from being sabotaged by low expectations or unreasonable demands. And I have experienced the kind of failure that comes from just not being able to do what I am trying to do.
What does this have to do with presuming competence?
Well, the first part of presuming competence is presuming capacity. Presuming that the ability to learn and understand and do new things is there. This is good. I like this. Please, keep believing that I can do things, or at least should be able to give them a good honest try before doing them for me or moving on and putting it in the permanent failure pile. Assuming what you are asking of me is possible here in reality land (deciding to not have a seizure in face of triggers doesn't fall in this category, FYI. And is the inspiring events, plural, for this post), let me try it. I want to try it. I want to fine tune it. Probably.
So, presume I can learn. If I tell you I can do something, or may be able to do something but I need to try it first, run with that. Allow me to try. Help me fine tune if I'm close but not quite. Rephrase. Demonstrate. Whatever. If I think it's in my eventual capacities, and you support that, that is presuming competence and is good.
But. I have failed a lot in my day. There are things I just cannot do. It doesn't matter that I can speak usually or can do a backflip or follow complicated written down chemistry lab instructions or calculate gymnasts' trajectories preternaturally fast, I still cannot hold more than 2 auditory directions in my head on a good day. I still can't read a map in any useful fashion. Whether I can make food without setting it on fire is iffy. I cannot just block sounds out. I cannot sit still and think at the same time. I cannot always make decisions without substantial field narrowing. I cannot always write a thing on demand without significant scaffolding. Et cetera.
When I tell you I cannot do something, presume that I am competent to understand my own limitations. I am not being lazy. I am not manipulating others into doing things for me. I have legitimate support needs. I have workarounds for most of the things I listed above. Slow, ponderous, time and spoon consuming workarounds, but workarounds nonetheless. But the truth of the matter is there are things I cannot do and I know that I cannot do them.
Assume that when I tell you something is not in my skillset and never will be, that I know from experience, or am making an educated guess. If you want me to cross an unfamiliar city on transit using nothing but maps and paper timetables without getting lost? You are dreaming. That is not going to happen. Have I tried this in recent memory? No I have not. But I know:
-I cannot read a map in realtime
-I am significantly time agnosiac
-My ability to navigate places I know very well is pretty iffy, much less new places
-I know the above well enough to struggle deviating from any initial plan, even if the initial plan deviates from me.
So it isn't a stretch at all to say that this is a thing that is not going to happen. This is an educated statement based on my knowledge of my skills and skill holes.
If I say I cannot do something, I do not need to prove to you, and myself, yet again, that I cannot do it. To demand that I show you my inability is presuming incompetence: you are telling me that I am wrong about my inabilities, and my ability to know them, until you determine otherwise. This undermines both my own agency and the ideal of presuming ability. We all have inabilities. It's ok to have inabilities-unless, it seems, you are disabled. Acknowledging a difficulty is not the same as presuming global inability. It's part of seeing me as a whole, really real person. Really real people are allowed to not be able to do things.
Proving yet again that I cannot do something so that you can say you presumed competence, even when I told you something is not a thing I can do doesn't do wonders for me, either. The chances of me waking up one day with that set of skills in infinitesimally small. Forcing me through that particular failure above rather than meeting me somewhere or giving me detailed written directions for several options? That's anxiety attacks. That is an anxiety attack squared, because being late makes me panic, not knowing where I am makes me panic, and plan changes that I have no good way of dealing with? Those are near inevitable, and also make me panic! Putting me through that because maybe I magically obtained abilities heretofore unprecedented? That's actually really mean. Don't do that. It sucks.
The ideal of presuming competence is lovely. I am all for it. But one of the skills we need to develop, and have acknowledged, is knowing where we struggle, where we fail again and again. Do not undermine this very important skill by telling us we are able to do everything but describe our own inabilities. That's not presuming competence. That's something else.
This might be tied in with the "anyone can do anything!" BS they feed to kids: Never say never! Don't say can't! Etc.
ReplyDeleteThe fact is that some things for me are can't. I can't stay in a hotel room full of stale cigarette smoke. I can't go for a run on a smog alert day. I can't write neatly. I can't stay organized without some serious accommodation. I can't converse and concentrate on something at the same time. I can't make eye contact while thinking.
Those are all can-not-do things for me. Full stop. I can work around them to some degree, but they are real limitations on my life.
A lot of people by that, "never say never!" baloney. Fact is, some things are never for me. Unless there's serious advances in modern medicine before I die, I will never be able to go running on a smog day, for example. It will remain a cannot do thing for me forever, since spontaneous remission of asthma is vanishingly unlikely after childhood. And that's okay. It's far, far better to acknowledge that some things are cannot do things than to pretend that cannot do things don't exist and then punish me for insurmountable limitations that are both not my fault and out of my control.
It is not that I'm not trying hard enough to overcome a challenge. It's that I have a disability. Given that the docs gave me a coin toss at life when I was born, gave me a coin toss at never being able to run at all because of my asthma, and have on more than one occasion given me less than a coin toss at surviving an attack, pretty sure I've done my share of overcoming. Stop telling me to overcome moar. Some things can't be overcome by the ableist "No limitation or other sign of disability" standards our society has. Just like my coworker with dyslexia will always need to ask me how to spell stuff when she's stressed, I will always need to plan my activities around the air quality and accommodate my executive function problems. That's not pessimism or lack of willpower or laziness or defeatism or whatever the fuck else the Beat It! Brigade wants to call it, that's reality.
(Can you tell I've been getting a lot of "Willlllpowwwerrrrr!" bullshit in meatspace lately?)
I get this. And to me, it's the difference between therapy and trying to "fix" the person and SUPPORTS to help with the disability.
ReplyDeleteOh I can tell, ischemgeek. Based on our interactions, you've got that thing I have where if it can be out stubborned, it will be out stubborned. That's just not always an option here in realityland.
ReplyDelete(Being forced to overcome sucks, but I'm glad you kicked the coin tosses in hte ass, btw)
@Brenda EXACTLY. And presuming I am competent to know when I need supports. I'm actually really good at that game.
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ReplyDeleteYeah.
ReplyDeleteI've done a martial arts tournament with bronchitis and 65% lung function. If it's possible to out-stubborn something that matters to me, I'll out-stubborn it.
One time, my father threatened to kick me out of the house if I didn't admit to something I didn't do. It was something petty, wreck a form he could easily reprint with staples. I was sick and fucking tired of being the family scapegoat and accepting punishment and blame for shit I didn't do, so on principle, I started packing a bag and spent half the night outside. He told me before I left that he was more stubborn than me. I looked at him and said, "No, you're not. And I didn't staple your form."
My mother talked him around and came out to find me, and I told her I'd return on the condition that he admitted I didn't staple his damn form. I didn't tell her that I had enough cash in my savings to buy myself a bus ticket and show up on my aunt's doorstep - an aunt who knew shit was fucked up at home and had promised previously that her door was always open to me and that I could finish out high school with her if I wanted.
Now that I'm an adult, I wish I'd hitched a ride while still seeing red and just left. But going cross-country when I'd never travelled on my own and I'd had my head filled with horror stories and belittling by my mother, which made me certain that if I did get on the bus, I was probably going to get killed or sold into slavery or something before I arrived because I wasn't capable of looking out for myself (no, really, that was how she taught me to think - I realize as an adult that such thought is pretty unrealistic, but my mom had me brainwashed but good).
I know people are trying to be helpful when they say things like, "it's easy" or "just do it", but, personally I want to yell, "if I could do it, why wouldn't I?" Sometimes it's more important to know what you cannot do and will never be able to do as it is to be able to do things that are just hard and not impossible. Appreciate us for the gifts we do have and stop trying to make us like everyone else.
ReplyDeleteThank you for writing this!! I had a huge break with a good friend a few years ago over this issue. She really, really, REALLY wanted me to do things I couldn't do. One was the map issue. She was so upset with me because I "wouldn't even try" to read the map her way (I was in my late 40s at the time, and had plenty of experience "trying.")
ReplyDeleteThe good news of that situation is that she finally came around to understanding that it is what it is, but it was a hard, hard time. I'm so glad you put this into words!
I've had to face this before, too. Once, I was in Oviedo, a non-touristic (at least for foreign tourists) in Spain, at a non-touristic time of year, when it was very dark out. My traveling companion, an aunt, had gone back to the hotel while I stayed in a park talking to an internet friend, a local who was otherwise a truly amazing host while we visited. He wanted to go home and so left me on a street, even though I told him I didn't know the way back to the hotel. He said that was ridiculous, it was just that way, and pointed. I couldn't tell which street he was pointing at (there was kind of a v-shape of two streets I think). He wouldn't walk with me to the correct street, and sure enough I got lost at night in an area with not a lot of people, fewer whom would speak English, cold and hungry and too anxious to try approaching someone for directions. Before I became desperate enough to attempt overcoming that anxiety, I luckily wandered past the hotel and recognized it before I hit a breaking point.
ReplyDeleteA couple similar things happened on that Spain trip, right after I graduated college, which both reinforced my abilities and my understanding of my limitations. Just because I can survive while lost in a foreign city doesn't cancel out the fact that I can't remember the way in the first place! Although in one case, Sacromonte in Granada, where we stayed the longest, my aunt did teach me a landmark that allowed me to remember the main path I'd take a few times a day.
Probably the thing that's hurt me the most over the years was when I lived with my brother or other roommates who wouldn't believe my need to NOT HAVE THEIR MUSIC COMING THROUGH THE FLOOR/WALL AT ALL TIMES OF THE DAY AND NIGHT, or that certain (bass) pitches physically hurt. That sensitivity's gone away I believe, but overheard music can still break me down to the point where I can't function anymore. Interestingly, the same aunt is probably the only family member of mine who's ever believed me and accommodated my need for less background noise--once, I was exhausted and we had to pack and leave a hotel for the next one in the morning, but I was barely moving and with the TV on in the background, I couldn't focus enough to pack my suitcase. When I told her that, she didn't understand it, but she turned the TV off with little fuss. And I was magically able to pack again. At the time, I didn't know I was autistic so I didn't understand why other people found links like background music/dialogue = unable to do simple tasks so incomprehensible, but I definitely appreciate people who don't make the lack of mutual understanding into some big power struggle, who don't deny my reality.