This post originally appeared at Neurodiversity Matters.
I grew up hearing two things:
- You only have a disability if you can’t do something. At all.
- “Can’t” only means “physically incapable of doing so.” Otherwise, it’s “won’t.”
The bottom line was that no matter how much I struggled, I wasn’t “disabled” because I was physically capable of doing the things I struggled with. Eventually. With extraordinary effort. With the addition of self-discovered workarounds to mask both how much I was struggling and how much effort I was putting in. But I was, eventually, succeeding at things.
I also, eventually, burned out. I’ve written about my burnout before, but I’d like to emphasize here: burnout is what happens when you tell someone their entire lives that they’re not allowed to say “no” unless they are actually physically incapable of saying “no.” In order to say “no,” I had to be actually unconscious. In order to be disabled, I had to be incapable of saying “no.”
I’ve been fighting this idea a lot lately.
I struggle with executive function. A lot of autistic people do. And in the past week, two things related to that topic have floated across my Facebook feed in ways that made me strongly reconsider what it means to be disabled. What it means to “can’t.”
The first was a post from an autistic professor friend who was looking for more effective ways to manage her workload. Her system: limit herself to three work/adulting things per day, plus one household chore and one professional development task. That was it. As she put it, “Teaching is one Thing. Grading is one Thing. If I need to take [one of my kids] to the orthodontist, that’s one Thing.”
The second was a post from an autistic lawyer friend, who saw herself in the diagnostic criteria for ADHD and was asking who else she knew with both autism and ADHD, and who might be willing to offer some perspective. At one point in the comments, she mentioned that a big part of her hesitation about bringing the question up to her doctor was self-doubt. Maybe she was just being lazy. After all, she can make herself focus on things and keep a schedule together…if she expends enough effort.
I decided to try the first scheduling thing, because I live in a state of being perpetually overwhelmed by my to-do list. It’s not even that my to-do list is that onerous; it’s more that I live in a perpetual state of believing that I cannot say “no.” If I have a free moment, I need to be Doing Something Productive. As a result, my work week typically looks like this:
Monday: Try to do All The Things
Tuesday: Do nothing while I recover from Monday
Wednesday: Do nothing while I recover from Monday
Thursday: Try to do More Things. Have a panic attack about having not done anything since Monday.
Friday: Do All The Things while still panicking about how little got done.
Saturday and Sunday: Recover from two-day panic attack.
This is not an efficient or healthy use of my time. It is, however, the best use I can make of my time when I am struggling with an inability to prioritize tasks or pace myself. Most of the methods I’ve tried to help me with this have themselves been more work than I can handle. How do you use a calendar or phone alarms to keep things straight when setting them up and maintaining them is more work than your usual scatterbrained fight-or-flight method?
The point of the 3+1+1 method is actually to make sure I don’t do too much in one day.
The point of my friend’s ADHD post questions, at least for me, was the realization that being “disabled” means more than just being “physically incapable.” Yes, I’m capable of keeping track of my to-do list and of doing things. But I’m incapable of doing so efficiently, and I am incapable of doing so at all without expending significantly more energy than the average person expends on doing so.
Thus, I’d like to propose a more capacious definition of disability. Something like this: One is “disabled” with regards to a particular task when the effort one has to expend to perform that task is higher than the effort the average non-disabled person would require for the task (and that society generally sees as appropriate to the task, given the non-disabled person’s effort level).
For example, consider my ongoing struggle to organize my day and keep track of my to-do list.
Am I physically capable of using a day planner? Yes. I can flip open the pages, read the words, understand the layout, and write things in the various spaces.
How much effort do we think the average person expends on putting stuff in a day planner? My estimate is “not much.” It may be more effort than not writing things down at all, but it seems to require significantly less effort than memorizing 20 or 25 tasks along with their corresponding due dates for most people. I’ve even heard people say that, once using a day planner becomes a habit, it feels as if it requires no effort at all.
How much effort do I expend on putting stuff in a day planner? A lot. About as much effort as I put in to the drafting phase of this article I wrote for Disability Studies Quarterly. Considerably more effort than I put into answering questions for this interview, or writing the blog post you are now reading.
No, I’m not exaggerating. Using a day planner takes about as much mental effort for me as producing a 10,000-word scholarly article.
Keeping that memorized list of 20 to 25 tasks with corresponding due dates, by the way? Less effort than the day planner, for me. Which isn’t to say no effort; the memorized list is about as much effort as the interview was, only it’s constant effort. (Imagine giving an interview eight hours a day, seven days a week.)
For decades, I believed that because I could work a day planner (or because I can microwave leftovers, a task that requires similar effort), I wasn’t allowed to consider myself “disabled” with regards to executive function. I was physically capable, so the amount of effort required was moot.
Except it’s not moot. It’s a disability. I am still disabled.
Asking about relative levels of effort is essential, I think, not only for combating our own internalized ableism, but for interrogating whether public spaces and social goods really are “accessible” for disabled people. If I have to travel all the way around the block to my school’s one barrier-free entrance, while my classmates can just duck in the nearest door, I’m expending considerably more effort. If I have to travel to the fourth floor to use the only accessible bathroom while everyone else can use the toilet on whatever floor they’re occupying, I’m expending considerably more effort. I may no longer be incapable of participating at all, but I still cannot participate equally.
We need to do better than “can’t.”