#deafblind

“You’re killing me,” I said. “I can’t take any more of that!”

Now serious, she said it was clear to her that none of that stuff about Mary’s clothes mattered, at least if her clothes weren’t the point. What mattered most about the image was that Mary was holding her diploma and smiling. “But,” she wondered, “do I say, Mary has a huge smile on her face as she shows her diploma or Mary has an exuberant smile or showing her teeth in a smile and her eyes are crinkled at the edges?”

It’s simple. Mary has a huge smile on her face is the best one. It’s the don’t-second-guess-yourself option."

The fearful are the ones who press themselves flat against walls as you pass by, the ones who see you coming and cross the street to not walk by you, the ones like the guy who walked into my path and then, upon seeing me, leapt two feet backwards shouting, "Oh shit!"

The fearful are an annoyance, but they're not usually dangerous. They don't seem to grasp that the path is generally wide enough for both of us, that my cane only takes up two more inches either side of me and isn't going to kill them. They're the ones that my friends remark on most, because once you realise what they're doing you can never stop noticing that people do this.

The aggressive, however, are a different story.

The aggressive are the ones who stare you down as you walk towards them like they're playing a game of chicken, the ones who wave and say hello and when you reply they use it as evidence you're not blind. They're the ones who try to hopscotch over your cane. They're the ones who will kick your cane and try to trip you up for fun. They're the ones that deliberately slow down, giggling as they look back at you, because they want you to walk into them and to hurt yourself. They're the ones who you'll walk by and, even though neither you nor your cane even brushes them, they'll get angry at you because don't you know you could hurt someone by walking around with that thing? Don't you know you should have someone with you at all times to make sure you don't hit someone?

There's a different kind of aggressive, too, and I don't know a single blind person who has not encountered this kind. This is the kind of aggressive who tries to "help" you, the kind who grabs your arm and drags you across roads without talking to you or asking. The kind who pull you into oncoming traffic and expect you to be grateful. The kind who pick up your cane to lead you. The kind who will get you hit by a car in the name of helpfulness. This kind does not realise or even care that it is terrifying to have an unseen person grab you and start dragging you away, who don't get that the cane is your contact with the world around you and they have stripped you of knowledge and safety by picking it up off the ground. This kind does not realise or care that it is still kidnapping, still assault, and they expect you to be grateful that they deigned to "help" you.

All three kinds don't see you as a person. The fearful see you as an obstacle, the aggressive see you as an idle amusement or a threat, and the helpful aggressive see you only as a way to feel good about themselves.

The second you hold a white cane you are unpersoned.

Mine happened as a result of long-term, debilitating and chronic stress levels, and after reading a few of the links in the pinned post, I feel like my experiences and the plot i had in mind helps avoid the problems with the traumatic-suddenly-I'm-blind-and-my-life-is-over trope.

Specifically (and pretty much the whole situation happens long before the story even starts, so she's very adjusted to the disability by the time we meet her) after spending her entire childhood with an abusive mother putting a Lot of strain on everyone in the household, and then another two years dealing with the court system dragging out a divorce and a major related case, and then her brother having a major health scare, she develops some form of psychogenic blindness and/or deafness.

Obviously that's scary for her, especially in the moment, but because it's a conversion disorder and also based on my experiences, that would mean that her ability to see/hear comes and goes, giving her a dynamic disability that changes based on stress/energy levels, etc.

I imagine a lot of the same advice regarding blindness would apply, but I'm curious how having blindness that comes and goes might affect some of that advice. Coming at it from the perspective of someone with a different type of conversion disorder gives me a lot of insight most other people wouldn't have, but I'm... not blind. I have visual snow syndrome that requires lighting adjustments sometimes, I'm mildly nearsighted, but I by no means consider myself truly blind, and certainly not in the way this character is probably going to be.

One thing I can probably make a good guess on is mobility issues and how often she might have to deal with getting accused of faking - because sometimes she literally can see as well as a sighted person, but if someone who only knows that she's blind/experiences blindness sees her doing something she normally wouldn't be able to do when having an episode of blindness, they might get up in arms about it. (Also something I have a bit of personal experience with and a fear i have a LOT of personal experience with thanks to my mobility issues being largely episodic and stress-induced).

Another one is the variety of types of blindness (and/or deafness) that might occur - my mobility issues stem from psychogenic versions of multiple variants of the same condition, so I'd imagine it'd be entirely possible for her to experience different types of blindness in different situations, especially at the start before things settle down when life gets calmer.

I think I'm rambling. Point is, I'm experienced with my type of conversion disorder, and I don't actually know how much of that translates to blindness (/deafness) from a conversion disorder, but I figured a good start would be to run it by an actual blind person who would, y'know, have experience with the blindness aspect of it, and someone among your followers might either have that type of conversion disorder or know someone who does, which would be even more helpful.

Episodic Blindness

Also tagging at @cripplecharacters for the Deafness stuff. I’ll try to help with the blindness here, but as always, a sensitivity read through would probably be best.

While I don’t have episodic blindness, my vision can decrease when I’m stressed, anxious, or tired. Or maybe the information I get from vision is decreased. These instances, as well as low lighting when trying to use my sight instead of resting, can also lead to eye strain. I have also dealt with glaucoma episodes that took away my vision, as well as severe post-surgery photophobia. Not the same, but some experiences are still similar.

One thing that helped me was having orientation and mobility skills already. I can rely on these skills rather than on my remaining vision. I was also able to use a screen-reader confidently. Blind people with residual vision are often expected to rely on it, but it won’t always be there even if your vision is expected to remain stable. Having these skills is helpful. Learning to use them when not under stress or big vision / health changes improves a person’s ability to use them in difficult situations, like during episodic blindness.

So it would help if she had experience with a cane or human guide beforehand. Knowing how to have someone else guide you and advocating for your needs is also an important skill. She should also carry a cane if an episode happens when she is not at home.

I’m also wondering if a Hearing dog or psychiatric service dog would help? I am not 100% sure about criteria for animal guides, in that I don’t know if she would be approved for one due to possibly not using one enough (2-3 times a week, at least), but other service dogs would probably be good for her. Not that a psychiatric service dog is different from an emotional support animal. But I’m let @cripplecharacters give thoughts on this option if they have any.

Since she’s adjusted to it at the start of the story, let me get to the other questions.

Blindness and Deafness exist on spectrums, of course, so she might not be totally blind often or even ever. However, the good thing about blindness is that canes and Braille and screen-readers can be useful even for those with residual vision. For there, you can add in things like lighting adjustments, using light for orientation, and zoom technology. Braille would also be good for situations where she happens to lose a lot of sight and hearing simultaneously. But that may not always be the case.

As for people getting mad, unfortunately blind people are accused of faking all the time. That will happen regardless. People simply don’t know enough about blindness. Being able to advocate for herself and calmly explain her needs will be important. Sometimes ignoring people is better than confronting them.

Migraines might be a good example to use. People get migraines episodically. Sometimes certain situations can trigger a migraine. A migraine can have varying levels of intensity and duration. So just because a person isn’t having a migraine right now, doesn’t mean they don’t have that condition.

I don’t know going from sighted to the blindness spectrum is like, though. Let alone bouncing back and forth between them. So if anyone else has thoughts, please share them.

You can also message me if you have more specific questions as you write.

It deeply saddens me that despite how long deaf and blind people have been advocated for, our world is so quick to forget about them.

I am guilty of this too. I’ve been called out for not making posts accessible and I had to check my privilege! It was shocking to me how quick I was to feel defensive at first before I took the time to educate myself.

Anyways — all I really want taken away from this is that you should really make a point of putting other communities on your radar. Interact with their posts, research how to include them, don’t let anyone slip through the cracks of the system.

There is no specific DeafBlind category on the Census.

Because of this, we do not yet have an official data count on the DeafBlind community in America.

This is a perfect example of folks trying to erase the existence of disabled folks in real time.

Transcript, spoken by interpreter: "Hi. I am DeafBlind. I sign like this"

A note from their interpreter

I told them about the note on their original anonymous ask to @this-is-linguicism that said their form of sign is interesting. They wanted to share how their signing works if this blog ( @share-your-language ) was ever made and it was. They aren't used to signing in front of a camera, hence the stutter in their signs. They were originally going to sign the alphabet and numbers 1 through 10, but they were anxious and this was our best attempt.

A brief explanation of how their signing works

Each finger is assigned a number. 1 through 5 from thumb to pinky, then 6 for closed fist and 7 for open hand. Letters are assigned one to two fingers on one or both hands. For example, "Hi" is signed [both hands: 2+3, right hand: 2+3], which is simply the letters "H" and "I" one after the other. Most words are shortened to their quickest forms. "DeafBlind" is signed [left hand: 2, both hands: 1] which is simply "D+B", and "sign" is signed [left hand: 5, both hands: 6] for "S+N".

To respond to them, I or another person will have them lift their hands to chest height, then squeeze the fingers for the corresponding letters. If I were to tell them "Hi", I would lift their hands, then squeeze the index and middle finger of both hands, followed by squeezing the same fingers on their right hand.