towards a new disability bingo card; and, a question for users of screen readers etc.

[the_jack]

Inspired by both the Physical Disability Bingo Card and the Invisible Disability Bingo Card (and IDBC the sequel), I'd like to make a bingo card highlighting the horrifically unhelpful things people with disabilities all too often hear from people who should really, really know better: doctors (and other medical personnel including but not limited to nurses and EMTs, but primarily doctors).

My personal "favourite" is when I see a doctor for a follow-up appointment after they've ordered some tests, and they announce to me, "Great news! You don't have [insert diagnosis here]!" without actually having the real good news that they've identified the cause of the symptoms I came to them about. Especially when this is then followed by them essentially washing their hands of me, as they've looked for "everything" and "all the tests came out normal." Thanks, genius, unless your statement alone magically makes my body work again, it's not helpful at all.

I know other people probably have their own contributions to this category of fail!statements and fail!questions, and other people may come up with better phrasing than mine for many of them. (Brevity, alas, is rarely one of my virtues.) So please, contribute your own "favourite" inanities you've heard from doctor after doctor.

Another favourite of mine is "I'm not filling out any disability paperwork for patients (any more)" -- sometimes phrased as, "If you want the doctor to fill out disability paperwork, there's a fee of $___ for each form, which your insurance won't cover because oh right, it's actually illegal for us to charge for that especially when we're already billing for the office visit."

Then there's "No, I won't prescribe that medication for you, even though it's neither controlled nor a risk for addiction, and I actually don't have any particular reason for refusing, I'm just being stubborn."

Yet another favourite, though I haven't run into it personally in years, is "Either you really have that symptom/condition, OR you know some technical terms used to describe it in medical literature and other exclusive content like WebMD and Wikipedia; any patient who comes in and uses the correct terms to discuss either a symptom they claim to have or a specific diagnosis they want to be checked for is obviously either a hypochondriac, a malingerer or both!"

edited to add:
"If you just go back to your regular routine, you'll be feeling yourself again in no time." (Yes, this is different when it's actual medical advice and also being given in place of appropriate medical care, as opposed to when some doubtless-well-meaning layperson says it.)
and
"Your presenting with both symptom A and symptom B is suspicious, despite the fact that at least a dozen recognised illnesses feature both symptoms as common and/or diagnostic."
and
"I see that you're taking medication X, based on which I will assume that you have condition B, even though you helpfully wrote right next to the medication name and dosage that the medication was actually prescribed to treat condition A, and even though you wrote in the medical-history section that you have condition A and made no mention of condition B."

Although I've heard things like "but you're so young!" and "you seem fine / don't look disabled" from doctors and other medical professionals, I'm aiming for things which are profession-specific and haven't already been addressed on one of the other bingo cards.

As you can see I need help trimming these down from rant-size to bingo-card size, so suggestions toward that end are appreciated.


While I'm here... I've been wondering how screen readers and/or other assistive technology handle emphasised text, be it bolded, underlined, italicised or formatted with some other HTML tag, and whether some tags are more likely than others to get dropped by (or become illegible to) people using various kinds of assistive technology. Toward that end, some examples so people can tell how their tech does at letting them know what formatting the writer has applied:

1. This sentence has no HTML formatting tags.

2.

This sentence is enclosed in HTML "pre" tags.

3. This sentence is enclosed in HTML "B" (bold) tags.

4. This sentence is enclosed in HTML "U" (underline) tags.

5. This sentence is enclosed in HTML "I" (italic) tags.

6. This sentence is enclosed in HTML "em" (emphasis) tags.

7. This sentence is enclosed in HTML "S" (strikethrough) tags.

8. _{This sentence is enclosed in HTML "sub" (subscript) tags.}

9. ^{This sentence is enclosed in HTML "sup" (superscript) tags.}

Those are most of the tags I use. If there are other tags other people use frequently and are willing to change their usage of, if necessary, so that their intended meaning can be better conveyed to those using assistive technology -- or tags that people who use assistive technology know don't come through for them -- please comment, and I'll modify this post to reflect those, too. Please also note which software and/or hardware you're using, not so much for me as for other AT users, so we can helpfully compare how text renders in different programs. I encourage people using magnification (or some other assistive technology) rather than or in addition to a screen-reader to contribute their experiences as well.

Finally, does the "fandom heart" emoticon, <3 (less-than / pointy-bracket numeral-three) get lost in translation for anyone? Would the ASCII ♥ be better?

(Please also suggest any tags -- post tags, that is, not html tags -- I ought to have included but didn't. Or, actually, other html tags would also be good! But for different purposes.)

Comments

[rydra_wong]

hope's Nerdy PSA: Accessibility tips for the casual coder gives a basic guide to HTML tags and screenreaders -- might be a useful starting point.

[jadelennox]

as a sighted person who's done a lot of testing with screen readers and has spoken to a lot of screen reader users, I've learnt that many frequent screen reader users turn off all punctuation, so most of the emoticons get lost in translation in less the person is a power user and has programmed them for recognition to the screen reader. In my own experiments, ♥ appeared as silence with JAWS and NVDA, although that's probably also a configuration problem. But that was the out-of-box behavior.

I can tell you how those various formatting issues appear to me in my testing but I have learned more and more that that's the kind of thing that is different for real-life users than for test users.

[lightgetsin]

As I just said to that post, I contest some of its basic facts. She's not wrong that out-of-the-box, screenreaders don't render HTML visual tags usefully, but I'm trying and failing to think of a single screenreader user I know who hasn't enabled HTML tag rendering in some preferred form or other. I certainly have -- bold, italic, strike, super and subscript, etc. etc. are all flagged to me.

[rydra_wong]

Thank you for the info!

[annaham]

I'm person who put together the Invisible Illness Bingo cards, and I think your idea is FANTASTIC.

One of my most favorite comments, from a rheumatologist for whom I waited over three months to get an appointment with: "Your symptoms just don't seem *consistent* with any existing disease."

*SO* HELPFUL.

[For context: I was later diagnosed with fibromyalgia by another rheumatologist.]

[the_jack]

"I'm person who put together the Invisible Illness Bingo cards, and I think your idea is FANTASTIC."

Thank you! Your cards are fantastic, and much of what inspired my idea for the medical-professional version.


Wow, that asshead failed at rheumatology, bedside manner and use of the word 'consistent.' Of course, the first so-called rheumatologist I saw after my onset deliberately used the decades-outdated term 'fibrositis' instead of fibromyalgia, specifically warned me away from support groups, and as if that wasn't enough, instructed me over the phone that I should stay out of work several days on doctor's orders but then sent a typewritten letter to my employer "rescinding any and all" documentation from his office on the subject of whether I was well enough to work, even though the only thing he'd sent them before that was an illegible note scrawled on a 3x4-inch scrip paper. I'd actually been going in and trying to work, and being useless halfway through even a half-day, so my bosses knew I wasn't well enough to work, but HR policy said they had to have medical documentation.

Sigh, and now I'm reminded of another couple of entries that should go on the bingo card.

Which leads me back to that rheumatologist not being able to figure out you had fibromyalgia, which is not exactly rare or obscure. (Or not wanting to tell you that was obviously what was wrong due to some issue on the MD's part with whether it's "real" or not.) Seriously, it's so easy to diagnose a cat can do it -- and is in fact one of the best diagnostic options for FMS.

[meloukhia]

I can't distill it in a pithy way because my brain is rather soggy right now, but I'm a huge fan of doctors who basically suggest that I am lying; either I am not reporting something (like my diet) honestly or I am leaving information out. Something along the lines of 'now, it's important to be completely honest' or 'are you sure you're telling me everything?' perhaps?

[hopefulnebula]

Oooh, here's one! I've experienced this myself and seen it happen to one of my favorite people.

When medical professionals say "this won't hurt a bit," it's at best clueless. When they say it to someone they know has sensory/chronic pain issues and will feel whatever "this" is, it's actively harmful.

(Seriously. This has happened to me more times than I care to count. I remember seeing it happen to a cousin of mine who's about on the same place on the autism spectrum as I am, as well. It set us way back, because it did hurt and he lost any trust he may have had in the doctor when it did.)

[the_jack]

Ooh, good one. And one doctors don't restrict themselves to inflicting on PWDs, but level at everyone they see, even if it's just a healthy person in for a checkup, or in getting a checkup for their child... but yes, it can and does get extra special when they have a not-quite-really-human patient.

My last dentist was convinced I was lying about sucking on long-lasting candies, even though the far more obvious and consistent explanation for the condition of my teeth was that my non-invisible disability affects my ability to manage dental care along with everything else. And because he was therefore so angry and disgusted that I would dare lie to him, he punished me by drilling my tooth without sufficient novocain for almost two minutes. If I'd had the spoons to pursue it, I would've pressed assault charges; but he's now blacklisted in the state's Medicaid dental provider directory, and since the way things work here dentists either take Medicaid and the majority of their practice is Medicaid patients, or they don't take Medicaid at all, hopefully his butcher shop will be closed soon. Also, I found a new, awesome dentist... though that took way too long, of course. Healthcare reform can't come soon enough.

[the_jack]

"I've learnt that many frequent screen reader users turn off all punctuation"

Anyone who knows me, knows how hard I had to work not to shriek "Nooooooo!" at the loss of punctuation. My brain is very picky about correct punctuation -- far more than my personality is, which is why no one has killed me in my sleep yet.

I just tried using the Microsoft Narrator utility built into Windows Tablet PC Edition (my tablet is a phenomenal assistive device in many ways, boasting excellent voice recognition, handwriting recognition, and on-screen keyboard options for use in conjunction with either stylus, touchpad or trackstick in addition to a full keyboard and all the standard Windows workarounds like keyboard-only navigation, StickyKeys, Magnifier, etc.) and wow, they are not kidding when they say "Most users with visual impairments will need a screen reader with higher functionality for daily use." I couldn't get it to read my post at all.

In all seriousness, these are excellent data points, and I thank you for sharing them. I knew there were different screen-readers out there, and considering how much I customise my own user interface it doesn't surprise me that many screen-reader users customise their setting to the point that it would be impossible to ensure that even two page visitors both using, say, JAWS would get identical readings of the page's contents. ('Readings'? Is that a/the correct term?)

It's not a problem, from my perspective, if different users' screen-readers render my writing differently. (After all, some people, sighted or partially sighted, view all DW posts in their own style, or in style=light, or use a browser or other override to alter or hide all styles. More or less the same thing. And some people's 'wetware' alters text they see displayed, independently of software or hardware settings; my own brain sort of does this.) It just means that taking screenreader users into consideration requires a little more thought. (:

My hope in finding out more about how screen readers, and screen-reader users, perceive the different formatting options I can choose from isn't so much to necessarily get that "everyone 'sees' the same thing" effect, as to try to avoid having my message be garbled... and maybe also to at least sometimes have something "extra" for those who use that type of interface.

To use a probably bad analogy, if I were designing a piece of fabric art, I could focus purely on colour and shape, or I could incorporate texture into what I was conveying, and use velvet to communicate dark or warm, silk to communicate cool / silky / metallic, and so on... so that the piece had an extra dimension which would be entirely missed by anyone who only looked and didn't touch, and which repeated or reinforced the visual elements so that the piece could be appreciated without relying solely on its visual elements.

I know I hate it when people with able-bodied privileges I lack exclude me by exercising those privileges, and I hate the idea of inflicting that same hurt on someone else just about as much.

[the_jack]

Thank you very much for this link! It may not be exhaustive, and parts of it may be misleading, but it -- and its comment threads -- are full of useful information, too.

I've been using the "em"/emphasis tag rather than the "i"/italic tag preferentially for years... I vaguely recall it having been something I learnt to do via LJ fandom, but I could no longer remember why I was doing it. So Hope's Nerdy PSA reminded me of that, if nothing else... and anything that helps with my impaired memory is awesome in my book.

[the_jack]

Thank you so much for these clarifications. I'm going to go on the premise that there will be some, maybe even many, users who will use their screen-reader app with its 'out-of-the-box' settings, simply because the internet is full of people like these lost, confused facebook users commenting on the ReadWriteWeb blog who wouldn't be able to find the settings menu in order to customise their copy of whatever screen reader they had someone install for them... That said, it's good to know that more computer-savvy users can and do set their readers to indicate formatting tags for them.

Do you have any specific suggestions for how to handle strikethrough text? I know I've seen people use it (and used it myself) in any number of venues -- forum sites, various chat programs, etc. -- where the tag's function wasn't supported, but since the "s" or "strike" tag would be visible, and most people were familiar with it, the sense was conveyed just as well as if the text had actually been displayed with a line through it. So, with that in mind, would it perhaps be helpful to combine a "real" strikethrough HTML tag with a "fake" tag, something like <linethrough>[text]</linethrough> or <crossed-out>[text]</crossed-out>? (This question is directed to everyone, not just lightgetsin.) I use the strike tag both for clarity and, perhaps even more frequently, for sarcastic or humorous effect, and I hate the idea of that nuance being lost when I could, with relative ease, code my posts inclusively enough that (nearly) everyone could still "get it."

[lightgetsin]

Ahaha, yes, continue on the assumption that people are kind of slow. And to be fair, the configuration manager for the dominant screenreader is . . . well, let's say less than intuitive.

I've seen people do what you just did with strikethrough. I think that would be the tag most confusing to miss. In fact I know it is -- I've surfed without any custom settings a few times, and you really can get by without the various emphasis tags and visual flagging, but there's nothing more confusing than someone having two ends to a sentence using strike sarcastically if you don't get an alternate intonation or a "strike" notification.

[lightgetsin]

That's silent for me too, Jade. Because honestly, even though I am a power user, I haven't been bothered to sit down and input every fiddly goddamn emoticon variation, at least on this install, brand new as of the hard drive suicide of 2010.

[keeva]

Download a screenreader and try it out.

[the_jack]

That would, unfortunately, only tell me what my own experience of one program (or more than one, if I downloaded others) was like for me.

Screen-readers could actually be a handy thing for me during some of my migraines, when visual stimuli are infinitely more painful -- or just not getting through properly -- than auditory ones... Although, given how much difficulty I often have parsing even actual human speech without visual "signal boost" in the form of lip-reading or captioning, I have my doubts as to how useful a screen-reader's computer-generated speech would actually be, for me.

In any event, trying out screen-readers myself would give me absolutely no data points regarding what screen-readers are most in use among fandom people (which might be entirely different from what the overall most-popular screen-reader software is) or how other people use their screen readers (punctuation on/off, html tags read/ignored, etc.) which is why I made this post. Extrapolating my own experience, as someone with severe-but-correctable myopia, migraine and occasional episodes of temporary neurological vision failure, to people with entirely different kinds of vision problems -- or even with no vision problems -- who use screen readers would be both insufferably arrogant and, ultimately, useless.

[the_jack]

Or "little pinch." Yeah. This one is actually part and parcel of a really problematic attitude a lot of medical professionals have, that even adult patients -- even college-educated adult patients of roughly the same age as the medical professional -- are to be treated like particularly ignorant children rather than as equals.

It's an attitude that affects how they treat all patients, not just those of us with one or another (or one and another, and another) disability, but there are absolutely some people whose particular condition can make that particular attitude not merely rude but outright harmful. Your example of someone with autism-related sensory issues was masterfully on point.

A couple of years ago I had to be catheterised (for the first and, touch wood, hopefully last time) during an episode of sudden-onset paralysis. When the paralysis passed and the hospital was getting ready to release me, a nurse came in to remove the catheter for me. I asked her to give me a moment to relax everything down there so it would hurt less, and she blithely told me, "Oh, they don't hurt at all coming out!" so I -- ill-advisedly -- stopped bothering with breathing exercises and deliberate relaxing of those muscles. Needless to say, it fucking well did hurt when she yanked it out fast and I clenched reflexively! And it would've been so much less uncomfortable if she would've just let me continue what I was doing instead of, well, treating me like an ignorant child who has to be lied to "for their own good."

It wouldn't surprise me in the least if there were some medical professionals who only treat patients who have a disability -- or only patients with certain disabilities -- this way, and have a perfectly respectful professional demeanor when dealing with other patients.

Possibly this one will go in the "free space" square in the center, to reflect that it's something some medical professionals do to every patient, but which can often disproportionately affect PWDs.

[the_jack]

So at least some screen readers ignore ASCII characters unless they're each individually inputted by the end-user? Gahhh interface design fail.

Sounds like a situation that could desperately use an add-on to inform the screen-reader software of the contents of the HTML/ASCII character set.

Ideally there would be things like a commonly-used-in-internet-discourse batch (which would thus include ampersand-hearts-semicolon, as well as the codes that make ampersands and the greater-than/less-than pointy-brackets display without being read as code) and sets for people who deal with languages other than English and so need things like accented characters and other diacritics, or Greek characters (used in a lot of scientific and mathematical notation, not just by Greek speakers) or IPA characters (since you don't have to be able to see to be a linguist -- or to find IPA pronunciation tips in dictionary definitions or Wiki articles useful) as well as the ability to just have all the html-supported ASCII characters recognised. I can't code in any programming languages other than HTML and (super old school, Apple II-era) Basic, and advanced stuff is beyond me even with those, but this seems like the sort of thing some PWD or ally with mad programming skills could reasonably-easily tackle, and release under GNU. I know at least some screen-readers are open-source, so being able to write a compatible add-on shouldn't be an issue with those, at least...

I'm boggling a bit at screen-readers not considering ASCII support a standard feature. How, for example, is someone supposed to shop online (or even comparison-shop online prior to going round to brick-and-mortar stores or ordering by phone) if they can't tell whether the price listed is in euros, pounds or yen?

Anyway, [hearts] at both of you for pointing out that neither less-than-three-heart nor html-ascii-ampersand-hearts-semicolon will necessarily be read as anything recognisable as a heart -- or, indeed, anything at all! -- for people using screen-readers.

...Hmm. I'm guessing I should continue using two hyphens, -- instead of using Character Map or an HTML-ASCII code to display an em-dash, if I want screen-reader users to be able to follow my Melvillean compound-complex-contorted sentences? Or do the double-hyphens get garbled, too?

I am learning so much. Thank you all!

[amandaw]

My doctor (whom I love!) recently gave me the corollary to the "I won't fill out your disability forms" one: "I won't fill out FMLA paperwork if you're expecting to have a day off every week, too many people abuse it, as long as it's just (some ridiculously infrequent span that is rather counter to the point I was making that *I can handle a FT job IF I know that I can take off some amount of time regularly)."

Sigh.

[zanzando]

Ugh, yes!

"I'll just gently run my hand over the joint to check the swelling." says she and pokes her finger nail-first right into the ligament.
Me: *jerks knee up, swearing*
Her: "That can't have hurt! Don't exaggerate."

I'm already in chronic pain lady and manage it relatively well, when I start swearing like a sailor then it really hurts.

[lightgetsin]

Yeah, there's a DIY scripts editor built in, and a lot of homegrown scripts for access to specific programs or unusual configs. Hmm, now you're making me wonder -- surely someone has dealt with this. I'm poking through settings, and all I've found so far is a way to get the hex value of characters spoken, which kind of cracks me up.

-- is fine, I think, or the Microsoftian m-. The thing about it is that it's punctuation with no or very little implication that you should pause the sentence, so even if they're not recognized properly, I can generally parse what's going on out of general auditory familiarity.

[hopefulnebula]

Another one! I haven't experienced this but I know enough people who have that I feel safe listing it.

"I won't give you painkillers because you're just addicted/going to be addicted."

(Which, dependence isn't the same as addiction anyway, so.)

[starwatcher]

.
I've recently asked some questions about coding fanfic for screen-readers in my DW studio. With no answers from my reading circle, I asked my question at accessibility_fail, where the post under mine linked to this comm and, voila! If you have time, would you mind passing on some information, or showing me a URL where I can find the answers I need?

Thank you.
.

[yarram]

One adapted from my (now fired) audiologist: "Use this brand of assistive device, they're all the same, there's no reason to test the different models!"

[ratcreature]

My dentist once implied that I was imagining my tooth pain or that it was psychosomatic or something (he kept asking whether I was "stressed", wtf?) when he couldn't figure out why my teeth hurt. In general that seems popular that when they don't know what's wrong: they can't be bothered to expend any effort and just assume it's all in your head, because that's a neat solution, and start patronizing you.

[ratcreature]

Yes! My ophthalmologist once insisted that getting the glass pressed on my eyeball couldn't hurt after the eyedrops, so when I kept flinching back, he kept pressing harder and got impatient. Afterwards I actually had a bruised ring of broken capillaries on my eyeball! (I still don't get why they couldn't give me some kind of mild sedative against the anxiety to relax me, but they just insist that it is not bad.)

Another annoying thing is when they lie to you about recovery, like I asked before an eye operation whether it would hurt afterwards, and whether I would feel what they'd do to my eye and they told me I wouldn't feel anything. And then after, when my eye hurt and itched inside (nasty, nasty feeling), I was really concerned and afraid, thinking that something must be wrong, but only then the doctor told me that it was normal and that the stitches on the back of my eyeball itched when they healed just like stitches elsewhere. And even now my right eye still sometimes hurts on the inside. I mean, obviously I'd still have gotten the operation, because I don't want to become blind, but they could have said, rather than downplay the issues.

[duskpeterson]

"'Either you really have that symptom/condition, OR you know some technical terms used to describe it in medical literature and other exclusive content like WebMD and Wikipedia; any patient who comes in and uses the correct terms to discuss either a symptom they claim to have or a specific diagnosis they want to be checked for is obviously either a hypochondriac, a malingerer or both!'"

The sad part is, I've heard that from a loved one.

Concerning formatting:

I'm partially sighted; I mainly read in large print, in braille, or through text-to-speech software. I only use screenreaders on the rare occasions when my reading eyes go out on me altogether.

Here's the problems I've encountered:

1) I read in Arial Rounded MT Bold because it has big, thick strokes. Since it's a boldfaced font, I can't usually tell when a word is specially boldfaced. This isn't a problem except when bold is used for emphasis.

2) When I'm using text-to-speech (TextAloud), it won't read aloud punctuation. This means that, even if the author uses asterisks to indicate scene changes (authors often don't), I can't tell when the scene is changed. Because of this, I developed my own scene-change indicator, which any text-to-speech software or screenreader should be able to hear:

o—o—o

That is to say: the lowercase letter O, repeated three times, connected by dashes or double hyphens.

3) Since I can't hear the punctuation, it really helped me for several years if there was some indication in the text of when there was a change in speakers. Dialogue like this--

"I went to the park."

"At night."

"Alone."

--was difficult for me to follow, because it sounded as though it was all being spoken by one character. TextAloud now offers a solution to that problem - you can set it up to have longer pauses between paragraphs - but other people may be using software that doesn't do this.