Because accessibility means more than ramps. I am an autistic psychology student and spoonie trying to overcome ableism and adapt life to my needs. To create an accessible life I am arming myself with an understanding of autism, a validation that ableism is real, and an exploration of different accommodations. Main blog: www.anaccessiblelife.com. Submit your own accessibility success of the day!
Do you ever feel like someone you know is suddenly a stranger? Like they may be a nice stranger but still, you don’t feel like you know them intimately? Or is that a trauma/dissociation thing?
I can work or study from bed sometimes but otherwise I pretty fully relate to this. Inability to hold a conversation is no joke. I think I hit that point a bit earlier in the scale than most because my auditory processing is absolute shit.
when signing out forms to apply for disability / filling out a form for diagnosis
you’re supposed to fill it out as you on your worst days
like, I filled out forms that said I could do most things usually
like, my doctor added in the conditions like “yeah, they can feed themselves when not stressed” “they can do this when not stressed”
but how I should have filled it out was more like
“some days I can’t feed myself” “some days I can’t leave the house”
My doctor didn’t even know this, but I talked to someone who had worked with people with both developmental and intellectual disabilities for a number of years, and she told me to write down how it is for your bad days
this should be a thing they tell you, but it isn’t
part of the reason I didn’t get my autism diagnosis as soon as I should have is because I filled out forms wrong!
This also goes for filling out forms for disabled parking rights. I’ve been rejected multiple times for a pass cause I didn’t find this out till recently.
Wow
Also you’re generally supposed to fill it out as you are without help.
That throws me too. Because the more help I get, the more capable I get. It’s easy to forget what happens when the help falls away even partially let alone completely.
Echolalia, monotone voices, stuttered speech, slurred speech, labored breathing between words and sentences, mechanical AAC voices, AAC or sign users who consider those to be their voices, selectively mute voices, disorganized speech, speech with vocal tics, speech considered to be of “inappropriate volume”, speech with vocal stims, all disabled voices and the ways they present
So the Spoon Theory is a fundamental metaphor used often in the chronic pain/chronic illness communities to explain to non-spoonies why life is harder for them. It’s super useful and we use that all the time.
But it has a corollary.
You know the phrase, “Stick a fork in me, I’m done,” right?
Well, Fork Theory is that one has a Fork Limit, that is, you can probably cope okay with one fork stuck in you, maybe two or three, but at some point you will lose your shit if one more fork happens.
A fork could range from being hungry or having to pee to getting a new bill or a new diagnosis of illness. There are lots of different sizes of forks, and volume vs. quantity means that the fork limit is not absolute. I might be able to deal with 20 tiny little escargot fork annoyances, such as a hangnail or slightly suboptimal pants, but not even one “you poked my trigger on purpose because you think it’s fun to see me melt down” pitchfork.
This is super relevant for neurodivergent folk. Like, you might be able to deal with your feet being cold or a tag, but not both. Hubby describes the situation as “It may seem weird that I just get up and leave the conversation to go to the bathroom, but you just dumped a new financial burden on me and I already had to pee, and going to the bathroom is the fork I can get rid of the fastest.”
I like this and also I like the low key point that you may be able to cope with bigger forks by finding little ones you can remove quickly. A combination of time, focus, and reduction to small stressors that can allow you to focus on the larger stressor in a constructive way.
This is great accessibility advice. Focusing not only on having a reduced resource of energy to start with, but also on which events are particularly bad energy thieves.
this is my dashboard on desktop (they have a really convenient, easy to use app, too!)
What habitica does is it turns your daily tasks, your habits that you want to form, and your to do list into an rpg game. You level up, gain experience, and play the game just by marking things as done on your to do list. You can put literally anything in there, too. whenever i have a big project i’ve gotta do, I put every step, down to the letter, in habitica (which is a fucking superb way to xp farm while still staying organized).
The game is super fun because if you’re like me, and you work best with a rewards-based system, you’re literally in heaven. Everything you do gets you points, and bonus stuff, and helps you unlock parts of the game.
If you struggle to get your shit done, seriously check out habitica. It’s free and I’ve only been using it for like 2 weeks and I already have a vastly different mindset than I used to about keeping myself on track.
anybody know any songs centered on disability experiences (that are written by disabled people)?
i only know ‘seizure boy’ by watsky, but i figure there’s gotta be some more out there!
There’s a band called the Idealistics and they’ve released a song called “Here Come The Zebras” to raise money for Ehlers-Danlos Support UK. The vocalist has hEDS.
If you count mental illnesses you could add the song Ana’s Song (Open Fire) by Silverchair which is about his battle with an eating disorder.
I just remembered another one.
Her Diamonds by Rob Thomas. It’s about his wife Marisol’s struggle with an auto-immune disease. She sang backup on the track and also helped produce its arrangement.
Great resource. I’d like to add that Avril Lavignes new song “Head above water” is about Lyme disease.
An electric toothbrush and an escalator are two things that can stop working and still accomplish their original goal.
Ah, wonderful! This post can help me illustrate something I’ve been trying to articulate for awhile: the concept of benign or unintentional abelism.
Escalators and electric toothbrushes are perfect examples of things that many able-bodied people assume exist for their own convenience, and this post is a perfect example of that unconscious assumption.
An escalator that has broken down is still perfectly functional, right?
Well, sure–if you could have used the stairs to begin with.
But for people like me, for whom the escalator was not a convenience but a mobility device, a broken down escalator is not functional.
An electric toothbrush might seem like something that could be just as easily used turned off as turned on, but for someone with Parkinson’s, or any other number of nerve, coordination, or grip issues, the function of the electric toothbrush is a necessary feature, and without it, the task at hand becomes far more arduous (or even impossible).
I’m not angry or trying to point out why this post is “bad” or “wrong”–I’m simply trying to point out that people who assume every time or energy-saving invention was created as a means to help able-bodied people be lazier should consider re-examining those assumptions. It might help you become more compassionate toward your disabled friends and family, or at least more aware of the struggles we face daily.
I’ve had plenty of folks ask for examples of abelism and I am terrible at coming up with them on the spot, so here you go. This is a great one: assuming every modern convenience is only a convenience for everyone, when for some, it is, in fact, a necessity.
This is a great explanation of how inaccessibility is maintained through unintentional ableism.
I really can’t grasp the concept of telling someone about a problem if you don’t want help fixing it. I mean I guess I get it if it’s something that can’t be fixed and you just want to vent like if someone close to you died or something, but if you tell me about a problem why would you not want help with solutions????? What else am I supposed to say???
I’ll ask “Do you want advice, or do you just need to get this off your chest to a listening ear? I’m cool with either.”
Good things to say when someone only needs to vent are things like:
“Wow, that really sucks!” “Really? Dang, I’m sorry that happened to you.” “OMG, that was crappy of them to do / say.” “Geez, I totally don’t blame you for feeling (emotion) about that.”
I want to comment on this because for the longest time I didn’t understanding the concept of talking to other people for emotional, rather than practical support. This led me to see people as negative, irrational or needy when they told me about things but didn’t seem to want me to offer solutions.
The thing I realized was that my understanding, empathy or validation might in itself be the solution for the other person. They may be in a space where they are really unsure about the validity of their own experience and they need my help with that.
You may not understand why they need what they need exactly, but you don’t need to understand it in order to respect it. If you’re not in a space in your own life where you rely on other people for validation that’s ok, but that’s not a reason to dismiss the people who do. Their need to feel seen or heard is not unusual or wrong.
If, like me, you’re pretty bad at this kind of conversation, here are some pointers:
1. Ask, without judgment, whether they are after emotional support or solutions. 2. Validate that you heard them - this can be as simple as saying “yeah that makes sense” regularly. 2. Validate their experience by for instance repeating back what you understand of the situation they are describing. Try hard to see it from their perspective, but feel free to add your own insight, as long as you are not offering solutions (”you are thinking too much about this” or other statements which tell them they need to process things the same way you would do not count not insight).
If in doubt ask the person you’re preparing to give emotional support to beforehand what they find helpful in this kind of situation.
This is one of a series of images by Artur de Menezes that are “created to explore the fails of accessibility that surround us every day.” I don’t know about y’all but as a disabled person I can certainly relate to that big golden ball heading for an uncomfortable encounter with that column. Cool art project.
