I am a multiply neurodivergent individual. I am Autistic, I have ADHD, I had numerous epileptic and photogenic seizures as a teenager, and I experience structuralized dissociation via Dissociative Identity Disorder. The largest source of stress out of all of these, is the executive dysfunction that permeates ADHD. Executive Functioning, I like to say, is the CEO of your brain. It prioritizes information, regulates emotions and inhibition, prompts you to begin and complete tasks, and involves your working memory.
If you’ve ever played the game “The Sims”, you’ll know that you queue tasks for your simulated person to complete. Your working memory is that queue, and if it doesn’t work properly, the queue keeps deleting before you can complete the tasks. This is a very basic definition of executive functioning. (In later versions of the game, you could give your simulated person a trait which made them forgetful, and the queue would actually delete, I found comfort in this feature. Seeing my disability represented made me feel more whole).
That said, I thought about how I felt like I was walking on eggshells around an ex friend of mine. Then I had a mini flashback to a memory where they reacted in a surprising manner to my idea of placing cards in each room of my house, detailing precisely how to maintain the respective rooms. They said folks would see these cards when they visited, and would think bad things about me. I left the conversation with the impression that they agreed it was pathetic for me to need this tool. This memory came to me nearly a year later, while I considered setting phone alarms, very thorough alarms, to guide me into establishing a routine. I thought about the implications of needing such extensive reminders to prompt me to complete “basic tasks”.
I did end up making cards for each room. But I couldn’t bring myself to use them. Each time I looked at them, I felt the crushing weight of years of ableism that told me I was less than a person because my working memory doesn’t hold information. I can’t prioritize the steps involved in tasks. I enter a room and stare, unsure of where to begin, panic rising to the surface. “Other people don’t need to google how to clean a toilet, every time they clean a toilet”, I say to myself as I google how to clean a toilet for the millionth time. I eventually took the cards down, too ashamed to even use the tool I’d spent hours creating for each room of my house.
I grew up surrounded by messages, both overt and implicit, that there’s something wrong with me for struggling with “basic tasks”. Folks were incredulous that I was smart in some respects, yet so painfully lacking in others. I was told I am ret*rded, that I’d never graduate high school, would never keep a job, would never attend college, and would end up on the streets if I didn’t end up burdening someone else. They couldn’t understand why I was capable of teaching myself foreign languages yet couldn’t bathe unless reminded. I could absorb stories about Greek Mythology but sarcasm and jokes went over my head. Alas, an imbalance of “intelligence” is a hallmark of autism.
Sometimes I stop to consider that in some ways, I’m incompetent. I desperately fight to retrain my brain to see worth as separate from ability, nevertheless, I cannot un-know that our society largely views and treats this incompetence with disdain. I cannot escape someone else’s perception of my humanity. I can however, keep trying.
When my spouse first suggested that I try to do certain tasks every single day so it becomes routine, I had little confidence in this endeavor. I was held back by my own internalized ableism.
And yet I think about how I’m trying to instill a sense of risk taking in my perfectionist child, who sometimes will not begin a task out of fear of failure, a word which here means: less than perfect. Am I not a hypocrite if I don’t even try? At the very least I might ingrain a routine that comprises of a small number of the tasks I have set out to do. Doing something is an improvement from nothing, it might very well be a non linear path to the end goal of a establishing a complete routine. Complete meaning: every task I’ve set out to do is done.
Again, I did ultimately establish a schedule via alarms. It includes reminders for things outside of chores, like contacting loved ones in a more consistent manner. I feel a particular type of shame about needing this. I consciously understand I cannot control that my brain “deletes” things, and that to judge myself for something I cannot change does nothing to improve the situation. I feel that because I care enough to set alarms to ensure I’m keeping in touch with them, it is evident that I’m willing to go to any measure to demonstrate my care for them. I eventually told these friends that I have to set alarms to remind me to contact them, and sure enough, not one of them felt it was a bad thing. Because they are good, kind people.
To return to the memory of my ex friend, I felt I was being judged for my disability. Their comments about folks seeing my visual aids and deciding I’m incompetent carries the implication that there will be further consequences beyond the opinion that I can’t care for myself or my space. Folks might also believe I’m not capable of caring for my children. These external sources of ableism inevitably become internalized, the idea that needing accommodations makes one less than, quickly becomes a message that others no longer need to push, because I tell it to myself.
It doesn’t have to be this way though. Maybe it’s naive, but I believe through our collective activism, disabled people can illustrate that needing accommodations doesn’t decrease our humanity. I want to believe that folks will be reasonable enough to recognize that I am worthy of personhood, worthy of being a parent, simply because I take necessary measures to make sure I can function.
I’m a Taurus, I am stubborn. I may encounter pitfalls where I momentarily believe that I’m better off dead because I can’t operate the same way neurotypicals can. Ultimately I return to the surface and dig my heels in, adamant that my personhood, my worth, is intrinsic. My worth is independent of externals, it doesn’t hinge on what I can, or cannot, do. We are more than a collection of deficits.
For Further Reading
-Tornado of Souls