Disability and Accessibility

Just wondering if there is anyone living with HSP here. I also have PKU, which I think has an effect on the HSP, but it would be nice to talk with other people with similar challenges.

After having chronic pain for numerous years, I finally found a doctor who believed that a healthy 20-something could have chronic pain. Two MRIs later, arthritis was found in my spine (C3-C5, L3-L5). Since then, I've been put on pain medication and undergone radio frequency ablations.

I've never met anyone else with arthritis in their spine. If you're out there, please chime in!

"May we re-member and re-embody the knowing that resisting abled supremacy is a love practice. Reducing community transmission in the spirit of collective responsibility is a love practice that is liberatory to every bodymind where abledness is temporary. " A 2 part essay. Part2 is here: https://www.itsjiyounkim.com/blog/love-ethic-in-a-pandemic-2

As a person with ADHD I do enjoy spinning in my chair, and feel sad when it is missing. Do you think all chairs should spin so that people like me can feel happier?

Has anybody with ME/CFS found a way for reducing or preventing hand/wrist/arm pain and stiffness? Since it's not really muscle or tendon related, things l have tried (compression gloves, larger handles) have made very minor or zero difference. Any ideas?

I want to be able to write in a notebook, draw or play video games for longer than extremely limited short times or nuking my ability to use that arm for a while afterward. I recognize this may be an unrealistic goal, but I figured I'd ask anyway? I seek the wisdom of the ME collective on this one.

This article is two years old but still relevant to social media in 2023.

One of the biggest barriers is the assumption that blind people just won’t be interested in visual media. “Just because they’re visual doesn’t mean that they’re immediately not attractive to people who are blind or low vision,” says McCann. “I think that’s one big misconception: ‘Oh, well, they don’t care about pictures.’ But we do.” When culture is molded on social networks, it sucks to lose out on a shared social language because you can’t see the images everyone is talking about.

Christy Smith Berman, a low vision editor at Can I Play That, responded to a TT Games tweet that announced the delay of Star Wars Lego with text on an image. When she replied with a request for alt text, Smith Berman was met with responses from people expressing disbelief that blind people would even be on Twitter to begin with, let alone care about video games.

"This is the true harm of the hegemony of the overcoming disability narrative: the idea that your access needs are a mere hindrance that you should always be working to be rid of."

Via @[email protected]:

…consider tools like GitHub Copilot, which claims to be “your AI pair programmer”. These work by leaning on the code of thousands and thousands of projects to build its code auto-complete features.

When you copy broken patterns you get broken patterns. And I assure you, GitHub, Google, Apple, Facebook, Amazon, stacks of libraries and frameworks, piles of projects, and so on, are rife with accessibility barriers.

Colectomies, colostomies, ileostomies, j-pouches, colo-rectal cancers, Crohn’s disease, ulcerative colitis - I searched but did not find! Where are all my gutless wonder peeps?

Are you unfamiliar with how blind people use computers? Are you new to the concept of screen reader software?

NVDA is free, open-source software for Microsoft Windows used by many blind users to interact with their PC through non-visual senses. While NVDA's foundation, NV Access, subsists on donations, the software has become the second most popular screen reader in the world.

This half-hour documentary by ABC News serves as a great introduction to NVDA and the stories of its creators. This show won't tell you how to use NVDA or how it works, but instead will tell you why it exists and why it needs to exist.

(Also, follow NV Access on Mastodon!)

So long story short at my original pain mgt clinic the only thing they would prescribe me is buprenorphine and tramadol. Buprenorphine made my knees and below swell. They put me on 300mg tramadol daily. With that I still can barely do anything everyday. Due to their restrictions I went ahead and went to a new pain mgt clinic.

I’ve had a couple apts there along with physical therapy but today was the day they finally got my urine test results and we were able to talk about medications. Since the max dose of tramadol is 400mg daily I do not have much room to go. She wants to try tramadol xr with ir to supplement it.

We are going to do this for a month but she is completely willing to go to stronger opiates. Even with my tramadol dose I’m at a 6 or 7 everyday. I was completely honest with her and told her my thoughts on it and how much pain I’m in even with tramadol. She is probably late 20s or early 30s and I’m only 25 so I think she is able to relate to me more and understand how important is it for me to be able to participate in life.

It was incredibly reassuring that I have finally found someone who is actually willing to work with me and give me the medication that I need even if it won’t be for a month. This whole year I’ve been stuck in my apartment only going to the grocery store. This whole time I haven’t been able to see the near future where I would be able to do anything. Now I can with her being my new doctor. I’m really excited even though I need to suffer for another month but I understand that she probably just wants to show that she did try something before going stronger.

An article talking about the details of the health supremacy ideology that is inbuilt into the way our systems work.

A very educational post about a ME/CFS /Long Covid experience from the perspective of a person with an occupational/physical therapy background.

Here is a very interesting text from Itxi Guerra originally written in Spanish and translated to English by Anti. It talks a lot about the relationship of anarchism and disability, but I believe it can an be interesting perspective to read for any kind of activists. In the first section there is also an informative list of all the various models and definitions of disability.

Hello! I’ve got chronic pain and just wanted to make a post here. Today has been a pretty tough day. Cabinets under my sink flooded yesterday so I had to clean all that up and really ruined my day and I woke up today incredibly sore and just in so much pain. It’s been tough but the day is almost over so hopefully tomorrow will be better