My needs are not “special”, they are human: assistive aids in my life

I had a school project a couple of years ago where we were supposed to make a collage representing disability. I thought about the ways disability is tangible and visible in my life, and realized the most obvious images available to me were the assistive aids I have come to use as supports. So I started brainstorming a list of examples. It was not long before I came to the conclusion that there is not really anything at all in my life that I do without supports of some kind. Here is some of the most crucial of the list I developed – maybe you’ll see yourself echoed here, or find a new idea of something that might help you:

Applesauce: this is the only way I have a chance of swallowing my… what, eight daily prescriptions? Even this skill took very gradual practice with minuscule pill pieces long into my twenties. (As far as I can tell it’s texture sensitivity and oral motor skills problems causing the impairment.)

Earplugs/ear defenders: earplugs go in multiple times daily, most commonly for transit. Layering with ear defenders is the only way I have a chance of attending concerts (which, even then they have to be special interest related).

Baseball cap or sunglasses: again, these go on every time I leave the house. I have a really narrow window of tolerance for light level, so I’m commonly turning on the lights in my house yet can’t cope with direct sun.

Stim toys and jewelry: you know the catalogue. Every kind of fidget, scented plushies, chew necklaces and glitter-water bracelets and spinner ring, confetti wand and watercolor drip keychains, soft furry stuffed things of all sorts, weighted beanie creatures… yes, I have a bit of a collection. Just a smidge. I highly recommend Stimtastic.

Frozen meals: to abled people these may represent convenience, but for me they’re the only way to regularly eat main dishes that aren’t granola bars. Cooking is not in my repertoire. I’m trying to get some in home supports to help, but the county program is taking a million years to decide whether I’m too high-functioning. *rolls eyes*

Weighted blanket: yes, even when asleep I’m using assistive aids. It’s also useful for meltdown recoveries. Placing it on my lap is some kind of alarm bell for the house elf (my emotional support creature, another assistive aid in my life – Muggles think she’s a cat) instructing her to come sit atop and tend to my brain.

Text relay: I was stunned to find, after finally trying this, that I can now just… call people! I didn’t realize how much I avoided it until I got the accommodation that makes it possible. Question for doctor? Can now call. Appointment for food stamps? Can now call. Poking my senators for the third time this week? CAN NOW CALL. It’s honestly kind of life-changing.

Reading aids: I set my Kindle app to display books with a lot of extra spacing and the OpenDyslexic font – as far as I know I’m not dyslexic, but these adjustments make a huge difference in how likely I am to read on a regular basis. (I think it’s a visual-input-overload sensory issue.)

iPad/speaker: if you’ve read this blog at all you know I use AAC part-time. Now that I have an actual device I can’t imagine living without it.

Captions: like my iPad, I can no longer imagine life without these. As I rewatch old favorites I keep finding out there was dialogue I had no idea wasn’t just background noise.

Bus pass: I can’t drive. Access to public transit at a rate that is ~affordable for my poverty level income is the only way I’m able to get to the doctor, school, coffeeshop, etc. I also rely on the Trip Planner and Google Street View to orient myself in advance to unfamiliar trips. (Okay, truly I avoid unfamiliar trips, but when it’s absolutely necessary I need these tools to pull it off without a shutdown.)

To do list app: helps with some executive dysfunction issues. I need it to be on my phone so I can add to it anytime anywhere. I will stop conversations to do this, otherwise I’ll forget what it is I meant to add.

What is interesting to me about this list is how unremarkable many items are. Some don’t seem to have to do with disability, although that’s what I use them for, because they’re used by abled people too. It says a lot about the value society puts on disabled people that supports we need are labeled “special” or “extra”, while the tools abled people use are considered just mundane details, or perhaps cool lifehacks. We are shamed and invalidated for needing/using certain accommodations, while the things that make the world accessible to abled people are treated as value-neutral or positive. This is true even when the things we need closely resemble the things abled people do! Millions of people use Google Calendar to block out their day in color-coded rectangles, but if I use a different app to add images to my own agenda, it’s called a “visual schedule”, a disability thing. If every patient on the psych ward except me needs water to swallow their pills, the nurses happily bring water along for every dose. But since I need applesauce instead, the nurses’ realization that they’ve forgotten to bring it for the dozenth time is accompanied by a sigh of annoyance.

I want to use my assistive aids without getting weird looks and invalidating skepticism. I want them to be affordable, or even – *gasp* – free for people who need them. (Note that we should be able to establish our need without having to jump through… I think I’m up to seven months’ worth of hoops with the county program.) In situations they don’t interfere with anyone else’s access needs, I want them to be the default. I want them to be normalized, or at the least accepted. Hell, some days I’d settle for tolerated.

My needs are not “special”. They are human. Abled needs and their supports are not a natural default, they’re just privileged by virtue of the company they keep. Mine deserve just as much resources and respect.

Advertisements

2 thoughts on “My needs are not “special”, they are human: assistive aids in my life

  1. Another fantastic post that could have been pulled from my own head. I use almost all of the “human needs” supports you referenced, including my ESA, my parrot, who is currently watching me smugly from atop my lamp (which is turned on instead of my primary light because it bothers my eyes). I carry my backpack full of supplies with me, and never fail to get odd looks from people about my noise-cancelling headphones, my various stim toys or my palm-sized stuffed dragon. I wish people would mind their own business and leave us alone.

    Liked by 1 person

    1. Ah your parrot sounds awesome! Not to mention the dragon. I’m glad you have found supports that help you, and yes I too wish people would leave us be.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s