Being disabled & chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better.
When you don’t - they abandon you.
People understand illnesses like cancer - you get sick & get better or you die. They can support & empathize with that.
When it comes to chronic illness … that support & empathy dries up. The idea that someone could be sick FOREVER & not die is too much for people.
I understand it’s not something anyone wants to think about. The idea of being sick forever with no end in sight is understandably scary. But just because something is scary doesn’t mean it’s not real. It doesn’t mean it’s fake or an exaggeration.
The unwillingness of people to confront their own frailty - to consider the possibility that they could lose their health one day - leads them to isolate those of us who are chronically ill. They disappear us so they don’t have to face it.
It often starts with comments like “I’m sure it can’t be THAT bad” or “you just need to try harder”.
Gaslighting remarks that are disguised as kindess when in reality they tell us you don’t believe us. Then people start asking “are you better YET?”
That one really hurts because the emphasis is always on the “yet”. It’s as though our still being sick is an inconvenience to THEM. No thought is ever given to how awful it makes us feel to have to explain for the millionth time that we aren’t ever getting better.
These exchanges go on for awhile until they succeed in either pushing us away - or they inevitably ghost us. But the result is always the same. Friends and family lost from our lives & us facing our illness alone.
This loneliness drives a lot of people to look for community on social media. It’s an invaluable place to connect because we can find like minded people & engage without ever getting out of bed. We don’t have to shower or try and look “our best”. We just have to show up.
Unfortunately there’s people who seek to tear down the connections you make online - either by invalidating them or by incessant trolling which render it nearly impossible to use the website. This has gotten much worse since Covid.
All of these things lead to an isolated and lonely life - one where there’s a lot of longing. I long for someone who will show up for me & help me without judgement. Without dismissing my concerns or insinuating I’m not really “that sick”. I long for safe & loving connection.
I worry that Covid has only intensified the loneliness for the vast majority of chronically ill people. Those who are desperate to believe Covid is over NEED us disappeared. We are a constant reminder of the fact that they’re risking their health - and they don’t like it.
I understand why they don’t want to face us. No one wants to face a reality of lifelong chronic illness. But turning away won’t save you. We can HELP protect your health. We can help build better safety nets so if you ever DO become sick you won’t struggle the way we do.
Plus you can help us. We’ve already lost so much. Our health. Our independence. Our agency in many healthcare decisions. Our ability to safely access public spaces. Our friends and family.
We need allies we can count on to be there to support us. Who believe us.
My ask of all people tonight is to take a moment and think of the sickest you ever were - whether that be a flu or Covid, food poisoning or surgery recovery - and imagine feeling that way for the rest of your life. Imagine knowing there was no end in sight.
Once you imagine that - consider how hard that reality might be in a world that’s screaming at you to “just stay home” or blaming you incessantly for covid mitigations. In a world that doesn’t even think you deserve safe access to healthcare. In a world embracing euthanasia.
Now reach out to a disabled or chronically ill person in your life. Tell them they’re cared for. Ask if they need any support. If you don’t know any disabled people …
Find an account on here & follow and amplify them. I promise we need that support now more than ever.
The proposed mask ban in North Carolina will turn people who are trying to protect their health (and the health of others) into criminals.
While the action of the government doesn’t surprise me - the response of the public does. I expected most people to find this type of law appalling - and instead I’m seeing people celebrating what I consider to be eugenics in action.
I wrote about the proposed bill, the public response and the disability community’s right to survive:
This is great but can we please also have Fedora (& Ubuntu, etc.) acknowledge they started shipping operating systems without a functional screen reader when they switched to Wayland and that that’s still the case?
This is not to name and shame. Unless we acknowledge this as an error on par with shipping without monitor support and unless the culture is altered to make accessibility a showstopper, it’ll happen again.
For Global Accessibility Awareness Day, we want to recognize the work being done on accessibility by @matt as part of the @gnome Foundation. He is the lead for @accesskit and is currently working on Newton, a Wayland-oriented solution for assistive technologies that can modernize accessibility on the Linux desktop!
I'm asking because it is really difficult to find a place for discussing accessibility in Fediverse posts beyond the limits of any one Fediverse server application....
I think a good approach could be to think about how you could reach users of different platforms.
A lot of Mastodon users follow hashtags, so including relevant hashtags (#accessibility and #blind seem like good starting points) might be a good idea. Tagging groups, such as @accessibility, might also help.
I think Kbin/Mbin might be better suited for this than Lemmy, as it integrates better with other federated networks. You can follow microbloggers and boost content, which in turn makes them likely to follow you back and creates a community beyond which Lemmy community you choose to post in. Your Mastodon followers will see your posts, but it won't matter to them which community you post it in.
It's hard for content to make the jump from Lemmy to Mastodon as Lemmy does not make itself discoverable, but as soon as content reaches Mastodon users nothing stops them from interacting with it (by boosting or replying).
Sadly Kbin.social lacks sufficiently active moderation these days, so you might be better off with an mbin instance. I also have no idea how accessible Mbin is to blind users.
Edit: I over-emphasized the point about reaching a broader audience. If you want to discuss a narrow topic but you don't want most ActivityPub users to see it because you don't value their input, I guess Lemmy is as good as it gets.
A lot of Mastodon users follow hashtags, so including relevant hashtags (#accessibility and #blind seem like good starting points) might be a good idea. Tagging groups, such as @accessibility, might also help.
As I've already said, for someone who is not on Mastodon, it's pretty much worthless to try and discuss Fediverse post accessibility as applied on something that isn't Mastodon with people who are on Mastodon. And Guppe is practically exclusively used by Mastodon users.
One example: Many Mastodon users have stuck in their heads that you can't post more than 500 characters in the Fediverse. For even more Mastodon users, "alt-text" and "image description" are 100% mutually synonymous and mean the exact same thing. Image descriptions, no matter what they contain, always go into the alt-text. It's like a law of physics, deviating from which is unimaginable.
If you talk about describing or explaining something in the post text body, whoosh, it flies over their heads. No matter how much sense that'd actually make.
Not to mention that you have to keep every post and every comment at 500 characters or below, otherwise a large number of Mastodon users will pretend you aren't even there or mute or block you outright. I know that from personal experience. And there are things that simply can't be discussed in glorified tweets.
Also, Mastodon seems to only know two kinds of pictures. One, screenshots of social media posts. The stuff that requires transcripts. Two, simple real-life photographs, especially cat pictures.
Edit: I over-emphasized the point about reaching a broader audience. If you want to discuss a narrow topic but you don’t want most ActivityPub users to see it because you don’t value their input, I guess Lemmy is as good as it gets.
Ideally, I'd discuss this topic with people from all over the Fediverse. And I want these people to discuss it with each other within the comments section. Mastodon users who really care a lot for accessibility, who want everyone's needs to be catered to, and who are shooting for WCAG level AA, just as well as users of Pleroma, Akkoma, Misskey, Firefish, Iceshrimp, Sharkey etc. etc. who have much higher character limits in their post and users of Friendica, Hubzilla and (streams) who do not have a character limit.
I don't just want a bunch of one-on-one discussions between myself and someone else. I want to discuss such matters with Mastodon users and non-Mastodon users, and I want the Mastodon users and the non-Mastodon users to read and reply to what the other side has written.
I want people on non-Mastodon projects to tell Mastodon users who only know Mastodon what things are like on other projects. I want Mastodon users to tell non-Mastodon users how important accessibility is and which aspects of accessibility is how important. And I want to learn from this discussion.
I want to read opinions and ideas from all over the Fediverse. And I want users from all over the Fediverse to read these opinions and ideas.
And in particular, I want to discuss with them edge-cases in accessibility that go far, far beyond Twitter/Mastodon screenshots and cat photographs.
@FediTips I'd love to see an article containing tips & tricks to improve #accessibility when using an instance's website and popular mobile clients. A couple of suggestions... stress how important describing media is for equal access & what options might be available in an instance's settings that could improve accessibility for a user. I know I'd certainly appreciate the tips, and imagine others with various disabilities would as well. #A11Y#EqualAccess
NC are proposing a bill to ban masks (including medical masks) in public settings. This is not only discriminatory - it’s dangerous. It’s removing the LAST tool we have to protect against COVID.
It also sets dangerous precedent & fuels damaging narratives about COVID.
The proposed bill would see all masks banned in public settings. If a person requires a mask - they would need to have a medical exemption. Disabled people are exhausted. We’ve been forced into dangerous situations for 4 years thanks to “you do you” COVID policy.
To now expect us to do additional work to procure a medical exemption just to be able to wear a respirator to help us prevent death or further disability? It’s unnecessarily cruel. Doctor’s appts & notes cost money. They’re not accessible to everyone.
COVID mitigation is already a significant social justice issue. By virtue of the fact our governments and public health have done nothing to protect people - individuals are left to procure protection for themselves. This protection isn’t affordable for everyone.
Respirators, HEPA filters, rapid tests, far UV… all these tools are out of financial reach for many people. We have fantastic organizations attempting to get respirators into the hands of those who need them - but some people are always left behind.
Now we’re adding an additional barrier by putting the burden of proof that a mask is required on the disabled individual. We’re forcing them to risk exposure to go to a doctor, spend money out of pocket for a note and then carry it around in the hopes they don’t get arrested?
If governments and public health would take Covid more seriously -
People wouldn’t need to don respirators nearly as often. But when the powers that be take away access to vaccines & anti-virals, refuse to clean the air, provide testing or paid sick leave? We have no choice.
Even if everything goes perfectly (which rarely happens) and a person has access to a respirator, can afford to see a doctor & obtain medical exemption… there’s still a good chance they’ll be forced to remove their mask while law enforcement analyze the exemption’s legitimacy
COVID infects extremely quickly. Breaking the seal on your respirator - even briefly - can result in infection. We’re asking people to jump through an inordinate amount of hoops and spend ridiculous amounts of money only to quite possibly end up infected anyways.
There’s also a bigger issue that stems from the idea that the “medically vulnerable” can and should obtain an exemption. It continues to drive the narrative that Covid is ONLY a threat to people who are already vulnerable. Which we know is untrue.
COVID is a multi system disease that has a 10% chance of causing disability. The odds of Long Covid go up with each infection. It’s not 10% in those that are already vulnerable - it’s everyone. Many young & healthy people have had their lives ruined by this disease.
The lie that only the vulnerable need to be concerned is one of the most devastating of the pandemic. People are getting infected over & over & think they’ve “gotten away with it”….When there’s good odds that they’ve got silent damage & their next infection will disable them
It also propagates the notion that the vulnerable are expendable. That it’s ok if we die or become further disabled because the rest of the world needs to “go back to normal”. There’s nothing normal about a society that turns its back on others.
This desperation to return to the way the world was in 2019 is quite literally killing people. It’s ruining lives. It’s dividing people, straining healthcare systems and causing long term health consequences that will have ripple effects for decades to come.
This NC bill to ban masks is just the latest in a string of terrible decisions that are costing lives. And it didn’t have to be this way. Had we admitted Covid was airborne and worked to implement clean air standards - we wouldn’t be in such a dire situation now.
Please boost in the hopes of reaching someone who can answer:
Can someone direct me to a form and/or a person responsible for ensuring ADA compliance (not a defensive "cover your ass" thing, but actually caring about accessibility) at USDA?
I'm looking for benchmarks.
For @mucConf we want to provide accessibility information online.
Please send me links to events/conferences that did a good job communicating accessibility information!
>>
Blind Sonos users have an important and rare opportunity to make our presence felt and our displeasure heard about the massive #accessibility regression in the new mobile apps.
Next Tuesday 14 May between 2 and 5 PM US Eastern time, three senior Sonos staff are conducting an “ask me anything” (AMA) session in the Sonos community. In attendance will be Diane Roberts, Senior Director of Software Development, Kate Wojogbe, Senior Director of User Experience, and Tucker Severson, Director of Product Management.
These are the key people in the company who agreed to the app being released in the inaccessible state it’s in, and they are the key people who need to take fixing it seriously.
Many people want to take some action that makes a difference. This is something you can do.
You can bookmark the page for the AMA. It is, https://en.community.sonos.com/events/sonos-app-redesign-ama-6
Try to become familiar with the forum before Tuesday, because while it isn’t completely inaccessible, it’s not the best and a little quirky. You should be able to sign in with your Sonos ID.
Perhaps compose your question thoughtfully ahead of time and have it on your computer, so you can paste it into the AMA when it goes live. It will not hurt for Sonos to understand how upset and inconvenienced many of us are by what they have done. We can do that firmly while remaining polite.
They need to understand, the best way to make us go away is to fix what they broke. We won’t be quiet until we get back what they took from us.
Happy contributing.
A brief reminder that our Call for Presentations for the next #id24 (scheduled for 12 September 2024) is still open until 7 June https://inclusivedesign24.org/2024/
(and a small note: have an idea for a talk, but perhaps you're not comfortable doing a whole presentation in English? let us know anyway ... in the past we've had a few presentations in other languages, so it's not necessarily a hindrance)
How much thought do you give to public drinking fountains? @sean_hollister has been pondering them more than most. For @verge's "Button of the Month" feature, he wrote about their history and future, construction, how a bubbler turns into a dribbler, and what the Americans With Disabilities Act says about them.
I've been working on a subtitle editor plugin for #peertube !
It adds a extra button on the update video page, and can do most of what you find in other tools, like visualize audio, basic formatting, and makes it easy to switch language.
The goal is that it should be "good enough" for most who just want to add subtitles/captions, but don't want to spend time finding and downloading dedicated software for this.
Instance administrators can install it via the plugin page. #accessibility#a11y#foss
At least 3 things missing from UC's Global Accessibility Awareness Day event:
The idea that there's any accessibility issues beyond the type digital technology tools could potentially help with
and
Actual diversely disabled UC community leading the event.
Statement up front as to what accessible options are available for this event.
Keeping the emphasis on digital tools allows abled people to continue their hegemony by simply training to be "experts" on accessibility, keeping jobs & control in abled hands. It allows UC to keep refusing to hire human captioners, human notetakers, as well as keep NOT addressing making things as accessible as possible as the default at UC.
⚠️ Avoid using flashing images or emoji on posts or profiles, as they can be physically dangerous to people with certain neurological conditions. (It's okay to post animations and videos, they just need to avoid rapid flashing.)
There is an option in Mastodon for people to prevent GIFs autoplaying, but not everyone is on Mastodon. A lot of people may be seeing your post through a shared web link.
More info on this topic (including how to switch off flashing) here:
@FediTips
I can't even stand autoplay animations. I think they should be disabled by default, but I always have to dig into the settings to turn them off.
And it seems that every single website I visit wants to put a video playing in the bottom corner.
Flashing ads, looped animations, autoplay videos, and the like send my brain into a frenzy.
I don't suffer seizures or migraines from blinking and flashing content, but I do recoil from the excessive, unnecessary visual noise.
Please, I beg of you, just allow for the fact that I am reading your post or visiting your web page because something enticing brought me there.
Don't drive me away by so-called attention grabbers that stoop to the level of flashing an LED flashlight in my face or making me watch jazz hands out of the corner of my eye.
If you're posting a video clip or an audio clip attached to a post, remember to include a text description which describes the sound. This is important so that the video or audio is accessible to deaf people.
Also, if it's a video, it's important to describe both the sound and the visuals so that it's accessible to everyone.
Text descriptions for audio and video are added just like text descriptions for images (exact steps vary depending on which app you use).
For discussing Fediverse accessibility, where would you recommend me to go? Or stay here?
I'm asking because it is really difficult to find a place for discussing accessibility in Fediverse posts beyond the limits of any one Fediverse server application....