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I'm gradually going , with some expected pauses here in .

I haven't talked about it much, publicly anyway. Like most of anyone's life, it's nobody's business but mine. But, today I spent a few hours searching for information on what to expect during this process, and didn't find much. So, I thought I'd write my experience up as it happens, for the next person who needs it.

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Pinned toot

I will not post or boost images without image descriptions.

Most Mastodon clients have an interface to describe an image when you toot. For example, in Tusky: attach the image, press the button in the lower right of the image, and choose Set caption. Repeat for each image.

Blind, low vision, and bandwidth-limited people rely on image descriptions. Thanks for including them!

Pinned toot

I’m Bren. I like to hack , , cloth, and wood. I’m interested in hacking , mobile apps, , and . I read a lot of .

I live in Urbana, IL with two housemates, three , three , some servers, some radio gear, and a few chronic problems. If you want to meet me in person, stop by cu2600.org sometime.

@GrapheneOS pushed Android 12 to my phone this evening, and so far, I absolutely love two of the changes:

- The time on the lock screen is huge (see attached screenshot)
- There is an extra dim setting

It is difficult to refrain from shouting, I am so pleased.

It's that time of year. I brought the turmeric in for the season today, and turned on the daylight-spectrum fluorescent light in my office. One of the leaves has a little damage I don't recognize (diagnoses much appreciated!) and I'm guessing it's cold damage since it got several degrees lower than expected last night.

This is the first resident of my not-yet-tropical room, and I have some other herbs & spices planned, so this means it's time to build it out!

Everything is really blurry today, particularly depth. It is exhausting and nearly vertigo-inducing when I move my head. My assistant can't go in to work today, so there's no point in me doing so; I would not be able to do much, and would get a headache that might prevent me from working tomorrow, too. My plan is to shut my eyes and learn to use a screen reader better.

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tech anti-patterns 

That is tech's attitude towards users in general: it's the young white men with totally unfounded ideas and a willingness to abuse systems they don't understand who are important. People who have been buried in some context for years and can tell you absolutely everything about it and what would work perfectly for people in that context, they are mere consumers (or maybe whiners if the tech foisted upon them with no thought for its practicality does not work), never partners.

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ableism, othering 

The sad part of looking at 3-D printing patterns that incorporate is how many such patterns seem to be contest entries in which sighted people explain how the item will benefit "them", i.e. blind and low-vision people.

In some cases, even the creator has never printed the item, and in others there is a shaggy dog story about not bothering to look up the basics of Braille (like, it's fixed size) or consult anyone blind until after delivering something useless.

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There are several free designs for neat things to 3-D print at Pinshape, including clothing tags, light switch identifiers, a Sudoku board, and a dishwasher clean/dirty flag.

pinshape.com/search/designs?q=

I'm still learning (always), so I'm going to try out these fridge magnets. They have large letter cutouts at the top, which looks very distinguishable by touch, Braille at the bottom, and alignment triangles to chain letters together.

pinshape.com/items/34303-3d-pr

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Our local library does 3-D printing as a service. You email them files or URLs, they vet it, you pay, they print, you pick it up. Works as advertised, very low effort, no skill requirement if you use someone else's existing design. Highly recommend.

I know of multiple libraries that do 3-D printing, maybe yours does too!

song lyrics secretly about executive dysfunction 

"Beginning to think that I'm wasting time
I don't understand the things I do
The world outside looks so unkind..."

Drift Away, Dobie Gray version

I found this tiny tulip tree (Liriodendron tulipifera) sprout in an area of the lawn I am turning into a mulch bed.

When you read my experience, realize that I have a lot of healthcare , and this is not my first (or second) condition. Yet I had to level up my skills to get satisfactory healthcare from my providers.

I have good insurance. I am white, middle-aged, and historically middle class. I can (and at eye doctors' offices, usually choose to) pass as a "respectable", able-bodied, "fit", cis het white woman.

If you don't have these privileges, I see you.

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But, in the end, when you are going through , doctors are not going to help you adapt to the vision problems they cannot correct.

Sometimes they will even push medical solutions that can have negative practical impact for you. They may not mention or even realize this because they are so focused on the medical outcomes that they had just as much trouble hearing past patients' practical feedback as they do hearing yours.

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A particularly frustrating experience I suspect happens to many people with degenerative is when a doctor says your vision is 20/20, or is otherwise pleased with your medical condition, but in practice, you cannot see well enough to accomplish your daily activities, at least the way you are used to doing them.

Keeping notes on how specific vision defects affect specific activities, and insisting the doctor comment on the practical issues you encounter, may improve your treatment.

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I was still willing to drive at night for about a decade after I stopped during the day, because car headlights effectively extend the length of the vehicle. Some light always reached my working vision, and my brain filled in a car instead of empty roadway.

More recently, I've had enough trouble seeing as a pedestrian that I let my drivers' license lapse entirely.

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Subjective can be very different from what shows up in a doctor's office.

For example, my brain seamlessly fills in what it thinks is in my missing vision. I sold my van and stopped driving during the day after I realized that my left side mirror showed me what was to my left rear *the last time I looked at the mirror with my central vision*. Fortunately other drivers avoided the accidents I almost caused during the few weeks it took me to figure this out.

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Even with the same diagnosis, you may experience different from others.

The study in my previous toot says most people with want more light, but I became more and more , to the point of wearing sunglasses indoors, turning the brightness of all my screens down to the minimum possible value (which was still far too bright on iOS devices), and getting additional darker coatings on my glasses. Post about 6 months ago, this trend may be reversing.

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Here is a 2014 study about how patients describe their . Unfortunately, this was the only copy I could find, and the actual data seems to be in screenshots of tables, with the rightmost column or two truncated.

ncbi.nlm.nih.gov/pmc/articles/

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Regardless of your diagnosis and prognosis, know that , , and going , are challenging sometimes, but also OK. This is a normal life transition that some people go through. I can do it. You can do it. Hang in there.

And, if you're reading this because someone you know is losing their sight: Your friend is still the same person. They didn't suddenly turn into your project or become pitiful, and they don't suddenly exist to inspire you or anyone else.

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If you have just received a diagnosis of and are freaking out, know that these days, most people with glaucoma do not go , especially if they caught it early and you follow your treatment plan consistently. You can find information on the relevant statistics, the available treatments, et cetera, by searching online, reading books by glaucoma specialists, and asking your doctors.

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For comparison purposes, I was diagnosed with in my early thirties, over a decade ago. This was early in the progression of the disease, and I have followed my treatment plan better than average according to my doctors.

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I'm gradually going , with some expected pauses here in .

I haven't talked about it much, publicly anyway. Like most of anyone's life, it's nobody's business but mine. But, today I spent a few hours searching for information on what to expect during this process, and didn't find much. So, I thought I'd write my experience up as it happens, for the next person who needs it.

(pinned thread)

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hax0rbana.social

Mostly hackers, mostly in Urbana, IL, talking to each other & our friends on like-minded servers without giving our personal data to the marketing machine.