Disability and Accessibility

For people with rare diseases—estimated to be between 263 and 446 million people worldwide—finding the right doctors and treatments can feel like a Herculean feat, a reality Alexandria knew all too well. “There is no long-term cure,” she wrote. “I’m very very very sick, things are progressing fast. I’m wheelchair or bed bound most of the time. I had 16 seizures yesterday and over 30 stiff person attacks.”

In the United States, rare-disease patients often go into significant medical debt to pursue treatment, even traveling to different states to see specialists with months-long waiting lists. In addition to the monetary burden, those seeking treatment for rare diseases also face a mental, emotional, and spiritual toll.

In the face of these obstacles, rare-disease patients like Durán must relentlessly call insurance companies and medical offices, create and share resources, and form care networks to lift some of the burden—and help keep them alive.

In this post, I seek to understand and explain the pervasive phenomenon of COVID denialism from the perspecitve of disability justice, specifically as someone who remains extremely cautious and anticipates doing so indefinitely. It's not intended to excuse this behavior—denialism is actively harmful to everyone the denialist interacts with and fundamentally eugenicist in effect whether or not in intention. But understanding and even empathizing with people who believe falsehoods and do harm can be valuable, especially when they make up such a huge portion of the world and for many of us are inescapably part of our networks and communities.

For unions, Covid-19 was a wake-up call. Large numbers of unit members were suddenly affected by disability issues: Workers needed paid sick leave, personal protective equipment, workplace accommodations, and help balancing caregiving needs. Disabled union members and organizers, who are often familiar with the Americans with Disabilities Act of 1990 and their rights under the law, became especially important. Many disabled workers told me that since the start of the pandemic, their unions have given them more responsibility and that a union’s willingness to collaborate with disabled members is crucial to determining how effective it can be in helping all of its members.

Bryan noted that the union framework provides an ideal avenue for ensuring that disabled people’s needs are heard. By design, unions uplift all workers by way of facilitating coordinated, collaborative actions. A collective union action pushing for better ventilation at work, for example, has a much higher impact than a single disabled worker asking for this accommodation. Solidarity between disabled and nondisabled members also makes it clear to bosses that workers are invested in inclusion for everyone—and as a marginalized community, disabled people are more vulnerable to discrimination at work that unions can help them fight. For the CFA, that inclusion started with advertising accommodations and supports at meetings to make it clear that disabled workers would be both welcome and heard, increasing meeting turnout and interest in engaging with the union. She said, “If you put the accommodations out there and let people know they’re there, they will come.”

The AIDS Coalition to Unleash Power New York (ACT UP), the flagship branch of the historic and global AIDS organization, attracted controversy on social media this summer around statements related to the Covid-19 pandemic. On July 19, ACT UP angered disabled and Covid cautious people with a Twitter thread that aligned people who criticize others for not wearing a mask with the historic criminalization of HIV patients. As many pointed out in response, people who wear masks are the vulnerable marginalized group currently being stigmatized and criminalized, not unmasked people who spread airborne disease. The thread also offered the nihilistic and deadly proposition that “people cannot prevent themselves from getting Covid in perpetuity.”

A question for those that may be hearing impaired, or otherwise use TV and movie subtitles frequently...

Do you have a favorite subtitle font? Do you have any further config preferences, like color or border?

I'm working on making a video player script UI more accessible, and I'd love some input.

cross-posted from: https://beehaw.org/post/15522654

This is more philosophical than practical and hopefully it's appropriate to the community.

This is something I've pondered over since I was young. What first got it running through my head was when my grandfather developed COPD and at about 10 I was tasked with helping him figure out his inhalers because I already had about a decade of experience using them. He was a very physical, active man. He was a WW2 veteran, he was a master carpenter and had built his own company, he was an expert woodsman and survivalist. Then he developed COPD and then Parkinson's. He had opportunities and accomplishments and a life that was forever closed off to me and that was a burden but I think he had at least an equal burden of having the knowledge, experience, and drive to continue to live as he previously had but no longer the physical ability. He had to relearn how to do lots of things with his new limitations as his Parkinson's progressed and it always seemed to me that it was an advantage that I never had to relearn things, I had figured out alternatives that worked for me to begin with. The biggest advantage to our situations was that we both had someone to have real conversations with about what we were dealing with. Someone it was ok to not be ok with.

Accessibility has come a long way since I was a child. Sports associations took way too long to decide that corticosteroids and anabolic steroids are not the same thing. You had to walk through the smoking section to get to the non-smoking section that was in the same room with no dividers or anything, sometimes even in medical offices. When I went to college I chose the one that I did because it actually had an office for students with disabilities. It was at the top of a hill in an old converted house that could only be entered using stairs and the closet disabled parking was a quarter mile away but it existed. The one counselor in the office basically set up a second office in a library study room so that students could actually meet with her and unfortunately she wasn't always convinced that invisible disabilities were legitimate. She did help with making sure I didn't have back to back classes on the opposite side of campus and she passed information from my doctor to the professor in my physical education requirement so I got what I needed from her without too much arguing.

A lot of the progress is really just awareness and destigmatation. It was very important to my parents and kindergarten teacher that I did not have autism, I have Asperger's. They thought that people with autism were mostly nonverbal, never did well in school, and had no future so the testing that said I was mildly autistic disappeared and I didn't find out about it until I was diagnosed in my early twenties and my grandmother told me that "we" already knew. I still don't disclose my disabilities unless I have to but it's kinda amazing how open people can be about their health issues and need for accommodation now.

There is no way to measure the cost of one form of labor in comparison to another in some generalized way. Less labor simply isn't the same direction for everyone, or even always a direction at all. Doing things faster may exhaust you longer, for example, it is always a trade off. On top of this, while many accessibility tools allow people to do things they could not otherwise, many instead allow people to do those things more safely or with another part of their body.

The key to accessibility has always been variety, being able to interact with things in as many different ways as possible. Making it simple isn't enough, making the requirements "low" isn't enough. You can't demand everyone take a specific path.

I have seen this as a big issue in art, in both ways. First people saying that one type of art takes "no effort", because they discount those types of labor. They see that one type of labor is not used that they expect, and do not realize or care that it must be replaced with another kind of labor. Different varieties of digital art often seem to experience this, especially those that don't start out with visual work and instead start with words or equations.

Then there are people saying that other methods of art are "easy enough" to be the moral option you must pick instead. I have seen so many posts of people saying "look, this person with no hands can pick up a paintbrush, you have no excuse to not being doing that instead".

Both of those are ableist, and sadly I see them in even "leftist" spaces all the time.

My best friend broke both of his arms and wrists, and will have zero use for 3-4 months. I'm trying to figure out some way for him to play videogames while recovering. Maybe some kind of foot controller? A mouth controller?

He's feeling miserable from the pain and I know that gaming would take his mind off of it.

Please let me know if you have any ideas.

I hope this is allowed here.

With the stuff happening in the UK atm. And honestly since 2010.

It really seems time we had a lemmy community specifically to discuse UK issues benifits and advice in general. These things are so specific to each nation. Such forums are a good idea.

While I am happy to set one up on feddit.uk . Or join and help anyone else setting one up.

Running such a community really will need several people willing to dedicate a bit of time moderating etc. More so as it is more likely for moderators to experience periods were they are less able to be involved. A decent sized mod team following agreed rules. Will allow any members to take a stress break as life gets complicated.

I am thinking about a community that allows posting of UK specific news. Asking advice. And rants as long as all members are friendly to each other. About life in the UK with any disability. Even self identified. Although depending on advice asked etc. Self identified disabilities are likely to need to be identified.

Please share you opinions.

Description: a toilet door with a multigender symbol and a disabled symbol. Text below the symbols reads "Inclusive| Ira tāngata katoa".

For context, this is the disabled toilet in the main art gallery in my country's biggest city. There are the standard male toilet and female toilet right there as well.

Edit: sorry, image upload isn't working for me. Basically the one disabled toilet has been turned into an inclusive gender and disability toilet. I love it that there is a gender inclusive bathroom but I don't love it that they siloed it into the disability accessible toilet instead of renovating a new one or changing one of the 4 standard ones instead or as well.

Amber Galloway doesn’t just do sign language to music – she uses American Sign Language (ASL) and her body, face and vibes to channel the live experience and energy to deaf and hard-of-hearing fans.

If you're wanting to build something accessible but not sure which tools / software to test it with, this is what you need to know: most used screen readers, web browser usage, braille usage, and more!

A while back I was in a business class, and I had this thought, that I really wish there was a way for me to log how many mental spoons* (how much mental energy) it takes to do a task. Something like a period tracker app, or a habit tracker, that could allow me to enter some data, and when it had enough it would be able to estimate how much energy a task would take, and how much energy I probably have on a given day, so that maybe I'd have an easier time managing my own energy. This idea developed into extending to physical spoons, as I've since developed chronic pain. It's not just that I suck at time management, although I do suck at that, it's that I have a hard time knowing how mentally or physically strenuous an activity will be for my mind/body, or how much energy I will have on a given day.

The hypothetical app would allow the user to input tasks, state how long they take, rate on a scale how strenuous the activity is both physically and mentally, or maybe have a number of custom scales. Like, for me it would be like, let's say i need to go get something from the pharmacy. I could input how long I need to get ready, how long the walk is, the fact that it involves bright lights in the store but it's usually pretty quiet, aside from cars on the way there and back. I could input that it involves talking to a cashier, which I hate doing but usually is only a few words. So I spend roughly 30 minutes on my feet, the task is low to medium Sensory Bad, has a small amount of Interacting With Humans, and takes a tiny bit of emotional energy due to the People Will Think I'm Stealing anxiety. Using this data and ideally previous data that the app has about my energy levels before and after other similar tasks, the app could then say "this will take 2 physical spoons, 1 sensory spoon, 1 mental spoon." So then I go to the pharmacy and when I get back, I note how tired I am, whether each of these aspects were worse/more draining than I thought, and whether the task involved more types of spoons than I thought, and it could adjust accordingly to future instances. There would have to be a means of quantifying everything, but I think this would help me as a Moss quite a lot. It would be even better if I could also input things like, how much i slept, spoons used the previous day, etc. so that the app could guess how many spoons i have on a given day. I think this would help me manage my energy levels better, both in reassuring me of what I am capable of and reminding me gently that I shouldn't overexert myself.

I looked into it briefly, and I haven't found many apps that specifically are made to help disabled people manage their energy levels like this. The closest I think is one called Flaredown, which is meant to help chronically ill folks track their symptoms and meds.

I was wondering if y'all had any thoughts on this? I know a small amount of java and C++ (I think, whatever tinkercad uses when you code virtual arduinos.) and while I would definitely need to learn a lot to make this happen, the logic of coding comes easily to me. My ADHD is likely to make it hard to follow through on this project, and it's pretty ambitious, but I still think it would be interesting to try and see how far I get. Do you folks think this is a good idea? Anything you'd like to see in an app like this? Any feedback or tips?

*For those who don't know, spoon theory is a framework for thinking about energy made by Christine Miserandino. It was originally used to describe her own Lupus, but has since been extended to a wide array of disabilities)

A relative wants to buy a wheelchair and I can tell there a lot to consider, but I'm having a hard time finding useful reviews of any model's actual usability, so I thought it'd be nice to get a discussion going on which chairs people loved, hated, or would otherwise like to rate. Is there something that is really great or really annoying about one?