Disability and Accessibility

Via @nick@hkc.social: > Big update to Firefox (117) dropped if using a screen reader. YouTube video lists, and videos themselves, now scroll much better than before.

There is a heatwave over here, I hope everyone is surviving somehow?

Wish me luck tomorrow, I need to have some testing done,hopefully i will learn more about my conditions. I also hope the maskless staff does not infect me with fuckin covid, cause...long covid is most likely one of the main reasons i even need to get the testing done 🙃🙃 🙃

A decade after a Virginia woman with Down syndrome fought for her right to make her own decisions, people are still losing that right too easily

WP gift article expires in 14 days.

https://ghostarchive.org/archive/UekyB

Diagnoses: Autism, TR-Depression w/ suicidal ideation, chronic insomnia with delayed sleep phase, GAD w/ multiple sub anxiety disorders (including agoraphobia), IBS C & D, Fibromyalgia, BPD, C-PTSD & PTSD, Pelvic Floor Dysfunction, Overactive Bladder, MALS, Hypertension, Gastroparesis, GERD, parasomnia, RLS, Hypoglycemia, Recurrent SIBO, TMJ, Anal Fissures, and the list keeps growing.

I applied for SSDI in November 2020 after becoming unable to work in December 2019.

I rode that claim past the ALJ (denied in January 2022) and to the AC, which supported the ALJ's denial in October 2022.

I submitted my second claim in October 2022.

That claim was denied in May 2023. I got a SSDI lawyer and they submitted the appeal in July 2023.

Now my psych - who handles all of my mental diagnoses and treatments, including weekly Spravato sessions, refuses to fill out the SSDI paperwork sent to them because "it's against office policy to handle SSDI documentation."

But I can't get SSDI without thorough documentation from the treating provider.

My GI specialists already completed and submitted the documentation.

It's not even a fee issue. I would gladly pay the fee or see if my lawyer would front it if that's all it took.

But, no. It's simply "against office policy".

I've literally submitted over 3000 pages of supporting documentation for my disabilities, but according to our government, I'm "not disabled" just because my doc won't complete a simple form.

FML

Edit: I'm at my weekly Spravato session. My psych gave me this signed form basically saying "fuck off".

To be fair to him, he did run the forms he received up the chain of command and the Director of Psych told him he couldn't complete them. Six years ago this Director McFuck decided that completing any type of disability paperwork (federal or otherwise) was "too much work" because of the "risk of being dragged to court".

FML twice over.

I really wish all the people who decided to pretend that the pandemic is over would read this and finally understand what is at stake

I've got a wedding to prepare for in a few months, and, let's not gild any lilies, I've gotten pretty fat since I injured my right knee and hip and lost a lot of mobility. I get around with a cane most days, and running/jogging (which I used to do a lot of) is now no longer possible (although I can use an eliptical).

I'm kind of scared to join a gym, because I hear they're pretty predatory with their subscription policies, and I don't know how much use I'd get out of one. I don't know what classes I can attend or what equipment I can safely use, or even what equipment to use for weight loss rather than muscle gain (or can they do both?). Unfortunately, the no-brainer option of "use a swimming pool" isn't available in my area, either.

Does anyone have any recommendations for fitness activities, classes, or equipment that are low-impact on the lower body? Are there exercises I can do at home without equipment that will burn fat? I'm not looking to become an Adonis, I'd just really like to be able to fit into pants smaller than a 46 waist.

Unleash the true potential of inclusivity with WCAG Video Accessibility. This feature ensures that all users, regardless of their abilities, can access and enjoy video content, creating a more enriching and empowering online experience for everyone.

Someone told me they’re sure I’ll spontaneously recover anytime now, since my body is “resilient and naturally strong”. It encoded a fascistic form of ableism, which divides people between strong and weak, where the former are invulnerable and the latter are disposable

This person cannot accept that my body is in fact catastrophically non-resilient, and extremely weak, because that would make me worthless and disposable by their own lights, and I am important to them

So, they have to conclude that I cannot really be sick. In their more caring moments they deny the reality of my illness by making baseless claims about recovery; in their less caring moments they threaten to have me sectioned “for my own good”

It’s striking how impatient their approach is. The recovery will be spontaneous. The psychiatric intervention will slap some sense into me. The illness simply cannot be allowed to persist a second longer

Opposing this fascistic form of ableism is absolutely necessary for any kind of meaningful love. This person, despite the fact I am very important to them, has not once expressed any compassion for my suffering since I’ve become sick

In their inability to conceive that I might be both very weak and worthy of care, connection, and community; they have catastrophically and perhaps even irreparably degraded our relationship

Because love, like any project that revolves around the notion of solidarity, requires a profound acceptance of human vulnerability, including ill-health.

Only by truly seeing and accepting where and how we are vulnerable, weak, and needy can we put in place what might protect us and enlarge the scope of our agency and possibility to thrive.

The fascistic impulse towards an ideal of “natural strength”, with the attendant elimination of all those who fail to live up to it, is fundamentally opposed to solidarity, community, and love, and must be detected and opposed everywhere it pops up

In muted forms, this impulse absolutely saturates our current culture. For instance, the idea that the pandemic is over because it “only affects the disabled now” encodes both the invulnerability of the healthy and the disposability of the sick.

Pandemic denialism couldn’t have taken hold so deeply so quickly if this way of thinking didn’t already pervade our collective imaginary, and wasn’t already reflected in our material reality. Let’s continue the work of thinking otherwise.

Meta's new social media network, Threads, launches without taking into account how users with various disabilities access software.

As a follow up to a similar post from last month, here is a more detailed list of barriers to access, compiled by AbilityNet.

• Inaccessible images
• No headings
• Navigation issues
• Button trouble
• Reloading difficulties
• Color contrast problems
• Media issues
• Portrait-only orientation

As regular readers of Rethinking Schools publications, we have benefited from many strategies for addressing the prejudices of racism, classism, and sexism. We wondered, however, about a parallel prejudice that rarely gets attention: ableism, or discrimination against people with physical, mental, or emotional disabilities. Using a set of 10 guiding questions we developed (Rethinking Schools 2009), we decided to explore ableist stereotypes in winners of the Caldecott Medal, which is awarded annually to “the most distinguished American picture book for children.” Caldecott winners are often endorsed by schools and libraries, and therefore purchased by many families. Unlike books intended for older audiences, picture books rely heavily on visual art to convey meaning. Children can read these picture books on their own; they don’t necessarily have meanings mediated by an adult. Books with the Caldecott seal may provide children with their first impressions of our diverse society. What hidden messages will they learn about disability?

"There is currently no mutual recognition of disability status between the EU Member States. It can cause difficulties for persons with disabilities travelling in the EU.

The European Commission worked with persons with disabilities and their advocates to test the European Disability Card.

Eight countries already use the European Disability Card a voluntary system of mutual recognition of disability status and some associated benefits.

The card ensures equal access to benefits across borders for persons with disabilities, mainly in culture, leisure, sport and transport.

Based on this good experience, by the end of 2023, the European Commission will propose a European Disability Card that would apply to all EU countries.

The card will make it easier for persons with disabilities to get the proper support when they travel or move to another country in the European Union."

Stefanie Lyn Kaufman-Mthimkhulu began doing disability doula work long before they ever heard the term. From the time they were in middle school, they remember “being responsible for big, intense crisis situations” with their friends.

Throughout high school, a close friend self-injured. Kaufman-Mthimkhulu would drive to her house and listen. They would also take care of their friend’s wounds, spend time watching bad TV shows and eat ice cream. What they didn’t do is blame or shame their friend.

Now, years later, disability doula work is a core part of both Kaufman-Mthimkhulu’s personal practice and their job as director of peer support organization Project LETS, which works to organize community-based mental health support for people with disabilities.

Alexis Misko’s health has improved enough that, once a month, she can leave her house for a few hours. First, she needs to build up her energy by lying in a dark room for the better part of two days, doing little more than listening to audiobooks. Then she needs a driver, a quiet destination where she can lie down, and days of rest to recover afterward. The brief outdoor joy “never quite feels like enough,” she told me, but it’s so much more than what she managed in her first year of long COVID, when she couldn’t sit upright for more than an hour or stand for more than 10 minutes. Now, at least, she can watch TV on the same day she takes a shower.

In her previous life, she pulled all-nighters in graduate school and rough shifts at her hospital as an occupational therapist; she went for long runs and sagged after long flights. None of that compares with what she has endured since getting COVID-19 almost three years ago. The fatigue she now feels is “like a complete depletion of the essence of who you are, of your life force,” she told me in an email.

Fatigue is among the most common and most disabling of long COVID’s symptoms, and a signature of similar chronic illnesses such as myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS). But in these diseases, fatigue is so distinct from everyday weariness that most of the people I have talked with were unprepared for how severe, multifaceted, and persistent it can be.

For a start, this fatigue isn’t really a single symptom; it has many faces. It can weigh the body down: Lisa Geiszler likens it to “wearing a lead exoskeleton on a planet with extremely high gravity, while being riddled with severe arthritis.” It can rev the body up: Many fatigued people feel “wired and tired,” paradoxically in fight-or-flight mode despite being utterly depleted. It can be cognitive: Thoughts become sluggish, incoherent, and sometimes painful—like “there’s steel wool stuck in my frontal lobe,” Gwynn Dujardin, a literary historian with ME, told me.

Fatigue turns the most mundane of tasks into an “agonizing cost-benefit analysis,” Misko said. If you do laundry, how long will you need to rest to later make a meal? If you drink water, will you be able to reach the toilet? Only a quarter of long-haulers have symptoms that severely limit their daily activities, but even those with “moderate” cases are profoundly limited. Julia Moore Vogel, a program director at Scripps Research, still works, but washing her hair, she told me, leaves her as exhausted as the long-distance runs she used to do.

And though normal fatigue is temporary and amenable to agency—even after a marathon, you can will yourself into a shower, and you’ll feel better after sleeping—rest often fails to cure the fatigue of long COVID or ME/CFS. “I wake up fatigued,” Letícia Soares, who has long COVID, told me.

Between long COVID, ME/CFS, and other energy-limiting chronic illnesses, millions of people in the U.S. alone experience debilitating fatigue. But American society tends to equate inactivity with immorality, and productivity with worth. Faced with a condition that simply doesn’t allow people to move—even one whose deficits can be measured and explained—many doctors and loved ones default to disbelief. When Soares tells others about her illness, they usually say, “Oh yeah, I’m tired too.” When she was bedbound for days, people told her, “I need a weekend like that.” Soares’s problems are very real, and although researchers have started to figure out why so many people like her are suffering, they don’t yet know how to stop it.

Fatigue creates a background hum of disability, but it can be punctuated by worse percussive episodes that strip long-haulers of even the small amounts of energy they normally have.

Daria Oller is a physiotherapist and athletic trainer, so when she got COVID in March 2020, she naturally tried exercising her way to better health. And she couldn’t understand why, after just short runs, her fatigue, brain fog, chest pain, and other symptoms would flare up dramatically—to the point where she could barely move or speak. These crashes contradicted everything she had learned during her training. Only after talking with physiotherapists with ME/CFS did she realize that this phenomenon has a name: post-exertional malaise.

Post-exertional malaise, or PEM, is the defining trait of ME/CFS and a common feature of long COVID. It is often portrayed as an extreme form of fatigue, but it is more correctly understood as a physiological state in which all existing symptoms burn more fiercely and new ones ignite. Beyond fatigue, people who get PEM might also feel intense radiant pain, an inflammatory burning feeling, or gastrointestinal and cognitive problems: “You feel poisoned, flu-ish, concussed,” Misko said. And where fatigue usually sets in right after exertion, PEM might strike hours or days later, and with disproportionate ferocity. Even gentle physical or mental effort might lay people out for days, weeks, months. Visiting a doctor can precipitate a crash, and so can filling out applications for disability benefits—or sensing bright lights and loud sounds, regulating body temperature on hot days, or coping with stress. And if in fatigue your batteries feel drained, in PEM they’re missing entirely. It’s the annihilation of possibility: Most people experience the desperation of being unable to move only in nightmares, Dujardin told me. “PEM is like that, but much more painful.”

Medical professionals generally don’t learn about PEM during their training. Many people doubt its existence because it is so unlike anything that healthy people endure. Mary Dimmock told me that she understood what it meant only when she saw her son, Matthew, who has ME/CFS, crash in front of her eyes. “He just melted,” Dimmock said. But most people never see such damage because PEM hides those in the midst of it from public view. And because it usually occurs after a delay, people who experience PEM might appear well to friends and colleagues who then don’t witness the exorbitant price they later pay.

That price is both real and measurable. In cardiopulmonary exercise tests, or CPETs, patients use treadmills or exercise bikes while doctors record their oxygen consumption, blood pressure, and heart rate. Betsy Keller, an exercise physiologist at Ithaca College, told me that most people can repeat their performance if retested one day later, even if they have heart disease or are deconditioned by inactivity. People who get PEM cannot. Their results are so different the second time around that when Keller first tested someone with ME/CFS in 2003, “I told my colleagues that our equipment was out of calibration,” she said. But she and others have seen the same pattern in hundreds of ME/CFS and long-COVID patients—“objective findings that can’t be explained by anything psychological,” David Systrom, a pulmonologist at Brigham and Women’s Hospital, told me. “Many patients are told it’s all in their head, but this belies that in spades.” Still, many insurers refuse to pay for a second test, and many patients cannot do two CPETs (or even one) without seriously risking their health. And “20 years later, I still have physicians who refute and ignore the objective data,” Keller said. (Some long-COVID studies have ignored PEM entirely, or bundled it together with fatigue.)

Oller thinks this dismissal arises because PEM inverts the dogma that exercise is good for you—an adage that, for most other illnesses, is correct. “It’s not easy to change what you’ve been doing your whole career, even when I tell someone that they might be harming their patients,” she said. Indeed, many long-haulers get worse because they don’t get enough rest in their first weeks of illness, or try to exercise through their symptoms on doctors’ orders.

People with PEM are also frequently misdiagnosed. They’re told that they’re deconditioned from being too sedentary, when their inactivity is the result of frequent crashes, not the cause. They’re told that they’re depressed and unmotivated, when they are usually desperate to move and either physically incapable of doing so or using restraint to avoid crashing. Oller is part of a support group of 1,500 endurance athletes with long COVID who are well used to running, swimming, and biking through pain and tiredness. “Why would we all just stop?” she asked.

Some patients with energy-limiting illnesses argue that the names of their diseases and symptoms make them easier to discredit. Fatigue invites people to minimize severe depletion as everyday tiredness. Chronic fatigue syndrome collapses a wide-ranging disabling condition into a single symptom that is easy to trivialize. These complaints are valid, but the problem runs deeper than any name.

Dujardin, the English professor who is (very slowly) writing a cultural history of fatigue, thinks that our concept of it has been impoverished by centuries of reductionism. As the study of medicine slowly fractured into anatomical specialties, it lost an overarching sense of the systems that contribute to human energy, or its absence. The concept of energy was (and still is) central to animistic philosophies, and though once core to the Western world, too, it is now culturally associated with quackery and pseudoscience. “There are vials of ‘energy boosters’ by every cash register in the U.S.,” Dujardin said, but when the NIH convened a conference on the biology of fatigue in 2021, “specialists kept observing that no standard definition exists for fatigue, and everyone was working from different ideas of human energy.” These terms have become so unhelpfully unspecific that our concept of “fatigue” can encompass a wide array of states including PEM and idleness, and can be heavily influenced by social forces—in particular the desire to exploit the energy of others.

As the historian Emily K. Abel notes in Sick and Tired: An Intimate History of Fatigue, many studies of everyday fatigue at the turn of the 20th century focused on the weariness of manual laborers, and were done to find ways to make those workers more productive. During this period, fatigue was recast from a physiological limit that employers must work around into a psychological failure that individuals must work against. “Present-day society stigmatizes those who don’t Push through; keep at it; show grit,” Dujardin said, and for the sin of subverting those norms, long-haulers “are not just disbelieved but treated openly with contempt.” Fatigue is “profoundly anti-capitalistic,” Jaime Seltzer, the director of scientific and medical outreach at the advocacy group MEAction, told me.

Energy-limiting illnesses also disproportionately affect women, who have long been portrayed as prone to idleness. Dujardin notes that in Western epics, women such as Circe and Dido were perceived harshly for averting questing heroes such as Odysseus and Aeneas with the temptation of rest. Later, the onset of industrialization turned women instead into emblems of homebound idleness while men labored in public. As shirking work became a moral failure, it also remained a feminine one.

These attitudes were evident in the ways two successive U.S. presidents dealt with COVID. Donald Trump, who always evinced a caricature of masculine strength and chastised rivals for being “low energy,” framed his recovery from the coronavirus as an act of domination. Joe Biden was less bombastic, but he still conspicuously assured the public that he was working through his COVID infection while his administration prioritized policies that got people back to work. Neither man spoke of the possibility of disabling fatigue or the need for rest.

Medicine, too, absorbs society’s stigmas around fatigue, even in selecting those who get to join its ranks. Its famously grueling training programs exclude (among others) most people with energy-limiting illnesses, while valorizing the ability to function when severely depleted. This, together with the tendency to psychologize women’s pain, helps to explain why so many long-haulers—even those with medical qualifications, like Misko and Oller—are treated so badly by the professionals they see for care. When Dujardin first sought medical help for her ME/CFS symptoms, the same doctor who had treated her well for a decade suddenly became stiff and suspicious, she told me, reduced all of her detailed descriptions to “tiredness,” and left the room without offering diagnosis or treatment. There is so much cultural pressure to never stop that many people can’t accept that their patients or peers might be biologically forced to do so.

No grand unified theory explains everything about long COVID and ME/CFS, but neither are these diseases total mysteries. In fact, plenty of evidence exists for at least two pathways that explain why people with these conditions could be so limited in energy.

First, most people with energy-limiting chronic illnesses have problems with their autonomic nervous system, which governs heartbeat, breathing, sleep, hormone release, and other bodily functions that we don’t consciously control. When this system is disrupted—a condition called “dysautonomia”—hormones such as adrenaline might be released at inappropriate moments, leading to the wired-but-tired feeling. People might suddenly feel sleepy, as if they’re shutting down. Blood vessels might not expand in moments of need, depriving active muscles and organs of oxygen and fuel; those organs might include the brain, leading to cognitive dysfunction such as brain fog.

Second, many people with long COVID and ME/CFS have problems with generating energy. When viruses invade the body, the immune system counterattacks, triggering a state of inflammation. Both infection and inflammation can damage the mitochondria—the bean-shaped batteries that power our cells. Malfunctioning mitochondria produce violent chemicals called “reactive oxygen species” (ROS) that inflict even more cellular damage. Inflammation also triggers a metabolic switch toward fast but inefficient ways of making energy, depleting cells of fuel and riddling them with lactic acid. These changes collectively explain the pervasive, dead-battery flavor of fatigue, as “the body struggles to generate energy,” Bindu Paul, a pharmacologist and neuroscientist at Johns Hopkins, told me. They might also explain the burning, poisoned feelings that patients experience, as their cells fill with lactic acid and ROS.

These two pathways—autonomic and metabolic—might also account for PEM. Normally, the autonomic nervous system smoothly dials up to an intense fight-and-flight mode and down to a calmer rest-and-digest one. But “in dysautonomia, the dial becomes a switch,” David Putrino, a neuroscientist and rehabilitation specialist at Mount Sinai, told me. “You go from sitting to standing and your body thinks: Oh, are we going hunting? You stop, and your body shuts down.” The exhaustion of these dramatic, unstable flip-flops is made worse by the ongoing metabolic maelstrom. Damaged mitochondria, destructive ROS, inefficient metabolism, and chronic inflammation all compound one another in a vicious cycle that, if it becomes sufficiently intense, could manifest as a PEM crash. “No one is absolutely certain about what causes PEM,” Seltzer told me, but it makes sense that “you have this big metabolic shift and your nervous system can’t get back on an even keel.” And if people push through, deepening the metabolic demands on a body that already can’t meet them, the cycle can spin even faster, “leading to progressive disability,” Putrino said.

Other factors might also be at play. Compared with healthy people, those with long COVID and ME/CFS have differences in the size, structure, or function of brain regions including the thalamus, which relays motor signals and regulates consciousness, and the basal ganglia, which controls movement and has been implicated in fatigue. Long-haulers also have problems with blood vessels, red blood cells, and clotting, all of which might further staunch their flows of blood, oxygen, and nutrients. “I’ve tested so many of these people over the years, and we see over and over again that when the systems start to fail, they all fail in the same way,” Keller said. Together, these woes explain why long COVID and ME/CFS have such bewilderingly varied symptoms. That diversity fuels disbelief—how could one disease cause all of this?—but it’s exactly what you’d expect if things as fundamental as metabolism go awry.

Long-haulers might not know the biochemical specifics of their symptoms, but they are uncannily good at capturing those underpinnings through metaphor. People experiencing autonomic blood-flow problems might complain about feeling “drained,” and that’s literally happening: In POTS, a form of dysautonomia, blood pools in the lower body when people stand. People experiencing metabolic problems often use dead-battery analogies, and indeed their cellular batteries—the mitochondria—are being damaged: “It really feels like something is going wrong at the cellular level,” Oller told me. Attentive doctors can find important clues about the basis of their patients’ illness hiding amid descriptions that are often billed as “exaggerated or melodramatic,” Dujardin said.

Some COVID long-haulers do recover. But several studies have found that, so far, most don’t fully return to their previous baseline, and many who become severely ill stay that way. This pool of persistently sick people is now mired in the same neglect that has long plagued those who suffer from illnesses such as ME/CFS. Research into such conditions are grossly underfunded, so no cures exist. Very few doctors in the U.S. know how to treat these conditions, and many are nearing retirement, so patients struggle to find care. Long-COVID clinics exist but vary in quality: Some know nothing about other energy-limiting illnesses, and still prescribe potentially harmful and officially discouraged treatments such as exercise. Clinicians who better understand these illnesses know that caution is crucial. When Putrino works with long-haulers to recondition their autonomic nervous system, he always starts as gently as possible to avoid triggering PEM. Such work “isn’t easy and isn’t fast,” he said, and it usually means stabilizing people instead of curing them.

Stability can be life-changing, especially when it involves changes that patients can keep up at home. Over-the-counter supplements such as coenzyme Q10, which is used by mitochondria to generate energy and is depleted in ME/CFS patients, can reduce fatigue. Anti-inflammatory medications such as low-dose naltrexone may have some promise. Sleep hygiene may not cure fatigue, but certainly makes it less debilitating. Dietary changes can help, but the right ones might be counterintuitive: High-fiber foods take more energy to digest, and some long-haulers get PEM episodes after eating meals that seem healthy. And the most important part of this portfolio is “pacing”—a strategy for carefully keeping your activity levels beneath the threshold that causes debilitating crashes.

Pacing is more challenging than it sounds. Practitioners can’t rely on fixed routines; instead, they must learn to gauge their fluctuating energy levels in real time, while becoming acutely aware of their PEM triggers. Some turn to wearable technology such as heart-rate monitors, and more than 30,000 are testing a patient-designed app called Visible to help spot patterns in their illness. Such data are useful, but the difference between rest and PEM might be just 10 or 20 extra heartbeats a minute—a narrow crevice into which long-haulers must squeeze their life. Doing so can be frustrating, because pacing isn’t a recovery tactic; it’s mostly a way of not getting worse, which makes its value harder to appreciate. Its physical benefits come at mental costs: Walks, workouts, socializing, and “all the things I’d do for mental health before were huge energy sinks,” Vogel told me. And without financial stability or social support, many long-haulers must work, parent, and care for themselves even knowing that they’ll suffer later. “It’s impossible not to overdo it, because life is life,” Vogel said.

“Our society is not set up for pacing,” Oller added. Long-haulers must resist the enormous cultural pressure to prove their worth by pushing as hard as they can. They must tolerate being chastised for trying to avert a crash, and being disbelieved if they fail. “One of the most insulting things people can say is ‘Fight your illness,’” Misko said. That would be much easier for her. “It takes so much self-control and strength to do less, to be less, to shrink your life down to one or two small things from which you try to extract joy in order to survive.” For her and many others, rest has become both a medical necessity and a radical act of defiance—one that, in itself, is exhausting.

Via the Focus State newsletter:

>This is an article about a lawsuit filed against a digital accessibility advocate named Adrian Roselli. Adrian has been outspoken against a type of software called an overlay. This type of overlay promises to make websites accessible for disabled people with just one line of code.

Recently I had some moderately intense encounters with medical staff, but I managed to be assertive and advocate for myself with some success. I even received actually good advice from some of them. I am feeling tired but cautiously optimistic. How about you all? Did anything go well for you recently? What was some stuff that let you feel some positive emotions?

With Meta’s claim that Threads will “focus on kindness,” it remains unclear how accessibility aligns with the platform’s definition of inclusivity. As CEO and founder of web accessibility company UserWay, Allon Mason, stressed, social media should be accessible to everyone, including the 1 in 5 individuals living with disability.

Via @LFLegal@mastodon.social

>This is an article about the delay in web access regulations. The regulations will help state and local government agencies in the United States make sure websites work for disabled people. They will help people with disabilities fully participate in all activities of state and local governments. This includes education, recreation, citizenship, and more. The regulations have been delayed. They are now stuck in a part of the United States government called the Office of Management and Budget, or OMB. The OMB helps the President of the United States meet their goals about what regulations are needed. The wait for regulations has been too long. The Americans with Disabilities Act is about to have its 33rd anniversary. It is long past time for these regulations.

I fell down an escelator in 2015 and fractured my ankle in 4 places. Had 8 surgeries, a spinal cord stimulator, and tried ketamine infusions (had a REALLY bad reaction) and ended up having my leg amputated below the knee. Then this past December I had a total knee replacement on the other leg. I've been having severe pain in that leg and they can't figure out why. Finally it looks like I may have CRPS. I have every single symptom. It feels really good to finally have a name for the hell I've been going through for so long. I just needed to write it out. I'm basically home/bed bound except for medical appointments. I'm just tired.

The weight of living with chronic illness is getting to me again. Could use some empathy from others who understand and won't pressure me to explain what's going on (a dozen small triggers maybe), turn it into their problems, or tell me it will get better or the worst, "Stay strong."

We've all been here so here's a place where we can sit with each other.

It says my approval is still pending and I'm not seeing new posts?

I was approved for a morphine pain pump. Went through the psych eval etc. I'm waiting to be scheduled for my trial. Has anyone had one and what's your experience? Thanks!

Recently there was a thread in the IAAP discussion board about "dyslexia simulators," software that is meant to simulate the experience to people who do not have dyslexia. The simulators work by taking text on a web page and randomly switching letters around.

• Here is an example at Harvard's Teaching and Learning Lab.
• You can also go to the Google Web Store and get a Chrome extension that will do the simulation on any web page.

In the discussion thread, there was a dissenting voice who shared an article by Carolyn D. Cowen, who objects to the use of these simulators.

To quote Cowen:

>As a person with dyslexia, as someone with dyslexia running throughout generations of both branches of my family, and, finally, as an educator who has taught countless children and adults with dyslexia over the decades, I feel pretty confident saying that this simulation is NOTHING like what it is like for most people who have dyslexia. > >The simulation is a devilishly clever coding trick and well intentioned, but contrary to the dramatic headlines, it does little to deepen anyone’s understanding about what having dyslexia is really like.

...

> the simulation’s likely take-away for the casual viewer with little or no knowledge of dyslexia is that this problem primarily is in the visual domain. From there, it is a short hop to assume that the solutions lie in the same domain.

...

>And those notions can lure families into time- and resource-wasting wild-goose chases pursuing costly, ineffective interventions.

If you have dyslexia, would you be interested in commenting on these ideas?

• Do you think dyslexia simulations are dubious?
• Do you have a preferred way of describing your experience?

In her weekly Better Allies newsletter, Karen Catlin highlights the importance of using stock images featuring people from underrepresented groups.

She maintains a list of sources for such images, to which she has just added a collection of public domain images from the Consumer Product Safety Commission of the United States federal government.

Article by @amberhinds@fosstodon.org on the use of infinite scrolling in websites:

• How it can be difficult for users of screen readers or keyboard input, and for users with cognitive disabilities, attention disorders, or obsessive-compulsive disorders

• Ways to make it better for assistive technology

• Pros and cons of using it

I have a rare muscle condition, to the point where I feel like I have to be careful where I even mention it because it might make me identifiable. It's pretty lonely sometimes because of the subset of people who have this condition, most of them don't make it to adulthood and I really don't have anybody to discuss shared experiences with.

Anybody else here in a similar boat?

Via Project Gutenberg:

>Helen Adams Keller was born #OTD in 1880.  She lost her sight and her hearing after a bout of illness when she was 19 months old. She then communicated primarily using home signs until the age of seven, when she met her first teacher and life-long companion Anne Sullivan.

>"Our study finds that 67% of individuals with Long COVID are developing dysautonomia. That’s an estimated 38 million Americans with Long COVID dysautonomia, and millions more around the world,” says Lauren Stiles, President of Dysautonomia International and Research Assistant Professor of Neurology at Stony Brook University.

>"We need the National Institutes of Health to immediately address this crisis and begin funding research aimed at developing effective treatments for Long COVID dysautonomia,” says Jacqueline Rutter, a Dysautonomia International Board Member whose family has been impacted by Long COVID.

If you're hard of hearing, deaf, have an audio processing disorder or just like how subtitles look, this guide is for you.

Pre-written Subtitles For Streaming Sites

Sometimes, streaming sites don't have subtitles readily available, but the media itself already does in other formats. This is where directories come in.

• OpenSubtitles is a crowdsourced directory of official subtitles for movies and TV shows. You can use a browser extension like this one (available on Firefox and Chrome) to add the information from OpenSubtitles to your streaming websites.

Live Captions

Other times, you're on a phone call and don't know what that one guy with the barking dog in the background is saying (we all know it's you, John, we can see the microphone icon right there), luckily there are live subtitles! These are generated using speech-to-text machine learning, so they aren't always on the money but they can still give a general idea of what's being said.

iOS/Mac

• Go to Accessibility settings and enable Live Captions. [NOTE: This only works for ARM macs— not Intel]

Select Android devices

• Press the second volume button, open controls, and enable "live captions."

Linux

• Install the Live Captions app from Flathub.

Windows

• Navigate to Start, All apps, Accessibility, and then Live captions.

This should help you still enjoy the show while knowing what the hell everyone is saying (an issue I struggle with personally, which is why I made this guide). Happy watching!

cross-posted from: https://beehaw.org/post/778529

> >“Where are you from?” Hanna asks between bites. > > > >“Columbus, Ohio,” the family guest says. > > > >Hanna built the Columbus Zoo and Aquarium into one of the nation's best. He then captivated national audiences on David Letterman’s late-night talk show, "Good Morning America" and a number of his own Emmy-winning animal series that still run in syndication. He traveled the globe as a leading animal conservationist promoting Columbus. It was his home for decades. It’s even where he once said he wanted his ashes spread whenever he passes away. > > > >But in this moment, none of that history feels familiar. > > > >Hanna pauses, then asks a question. “Have I ever been to Columbus, Ohio?”

A Game Jam was just announced where the goal is to test the technology you want to use for bigger blind accessible projects.

Sign up here: https://itch.io/jam/bare-1

This is a mini version of this game jam: https://itch.io/jam/games-for-blind-gamers-2

If you're not a developer but want to help, make sure to stop by and rate the games and give feedback to the devs who make entries!

I make blind accessible games as a hobby and have participated in a lot of jams trying to make blind accessible games.

So if anyone has questions I'll do my best to answer them!

>School was pretty terrible. School is the hub of our communities, and I was segregated within school. So I was therefore segregated from my community. Within school for years, people talked about me like I couldn’t understand them. And even like I didn’t exist. I was easily controlled and manipulated by adults, restrained and secluded and made to complete repetitive tasks with the belief that I didn’t understand them or my surroundings. I was in a perpetual state of discomfort and dysregulation within my own body. There was so much I wanted to say, so much I wanted to add and so much I wanted to change that was all built up in my head.

(Note: Autism Awareness Month was back in April, but this is still a good article.)