A Broken System.

I’ve written about dealing with inadequate hospital accommodations. Most anyone in the Deaf world knows that last-minute interpreting requests are tricky, at best, to accommodate, especially with specialized medical appointments.

I happen to know Christopher Rawlings from my UW-Milwaukee days. He has three children whom he adores. Recently, his oldest daughter went in for surgery; and later on suffered life-threatening complications that required a stay in the ICU. She’s doing better now. However: someone at the hospital seriously dropped the ball on this one, because at no point– save for a one-hour block after the crisis had died down– did the hospital secure a professional, in-person sign language interpreter for Chris, despite all his efforts to arrange one.

Here’s the story in his own words, after which I will proceed to dissect where the hospital fucked up– and yes, this situation warrants the f-bomb on what is normally a fairly family-friendly blog, because his kid almost died. Watch on and try not to rage, because this happens far too often in the d/hh world, and we really, seriously need workable solutions for hospitals, interpreting agencies, and deaf clients here.

 

Now, the promised reaming.

  1. This wasn’t an emergency or a walk-in. The hospital had time to prepare. Chris requested an interpreter well in advance– an in-person interpreter, specifically not a Video Remote Interpreter (VRI).
  2. He followed up three times– three!– to ensure that his request would be met. No dice.
  3. Instead of a live interpreter, the hospital consistently provided a VRI machine that took time to set up, biting into valuable communication access for Chris while the rest of the room exchanged vital information about his daughter’s state and care; and regularly shut down without warning. 
    1. Now, VRIs can work, sometimes and in some situations. However, in this case, it wasn’t even close to enough for high-risk procedures nor highly-charged emergencies, much less one that involved multiple speakers. Chris covers a bit of the difference at 10:30 -“I couldn’t care less about nurses checking in for this or that — the VRI system is enough. But anything that involves my daughter’s doctors and her prognosis? I NEED a live, in-person, ASL interpreter!”
    2. VRIs run on high-speed Internet access, so having a good connection is vital– and often lacking, as happened hereWhen Chris brought this up at 11:05, their solution was to provide two VRI units.
  4. The hospital had time, during what turned out to be a 9-hour wait for his daughter’s initial surgery to finish, to contact several state agencies for an interpreter.
  5. The staff tried to recruit his wife, ex-wife (mother to the daughter), and his 14-year-old daughter– the patient— as interpreters. OK, it’s bad enough that they tried to ask the mother, then the wife, to interpret. Emotional investment, lack of impartiality, lack of expertise, etc., etc.– but the daughter?! A minor?! Who was also the patient?!
  6. When they did send an interpreter, they sent a Spanish one– twice.

    Spanish.For a deaf man who uses American Sign Language. And whose family members all use spoken English.

There is more, but you get the idea. Someone dropped the ball, enormously, and kept dropping it throughout. This wasn’t an understaffed rural hospital; Children’s Hospital of Wisconsin is located in Milwaukee with decent-to-excellent national rankings in several fields. These people should know better. While Chris’s experience is one of the more egregious examples I’ve seen to date, stories like his are depressingly common in the d/hh world. Now, I don’t like to jump on the outrage train without looking into solutions. Chris is right; the system is broken and it needs to be fixed. But how?

I don’t have answers yet. I do have some specific questions to start off with. First, what can hospitals and interpreting agencies do in advance to prepare for and address situations like this, especially last-minute or emergency requests? Can a partnership be set up with local agencies where interpreters agree to be “on call” (much like nurses)? Can agencies or advocacy centers reach out to the relevant authority at hospitals to educate them? How feasible is it for a hospital to have a staff interpreter on retainer? How do they manage it with other language interpreters (e.g., Spanish)? Which hospitals do it right, and how do they pull it off?

If you know me, you know I’m spamming all the relevant friends I have for answers on this. And hopefully soon enough I’ll have a new post with answers beyond “He should sue!” (I think he should.) and “They’re breaking the law!” (They are.) What Chris went through was the aftermath of someone’s else’s fuck-up. What can local agencies, hospitals, and deaf clients do beforehand to ensure that they don’t run into more fuck-ups?

Ching-Chong Cued Speech Chang

The Deaf community takes up arms, and rightly so, when a celebrity or comedian mimics gibberish ASL. Latest offender: Jamie Foxx on the Jimmy Fallon show. Others include Chelsea Handler, Cecily Strong, and pretty much any SNL show to do with sign language.

Now, I consider myself a hard person to offend. Gibberish ASL has made the rounds so often by now that I just consider it a cheap shot, comparable to putting on horn-rimmed glasses, fake buck teeth, and chattering out a “chinky chinky Chinaman” routine. It’s been done to death, it’s connected to negative and insulting stereotypes, and it’s nothing like the original language or culture, so it doesn’t even make enough sense to be funny.

In other words, it’s pulling random gestures out of one’s ass. It’s lazy, tacky, and trite. Hearing comedians can be bad enough about this; you’d think Deaf comedians would know better.

You’d think. If you don’t have three minutes to spare, skip right on to 2:10.

Now, the joke itself starts out OK. The driver decides to weasel out of a speeding ticket by pretending that he knows Cued Speech– so of course, he bungles it up, thinking the cop won’t know better. The cop recognizes the driver’s attempts at Cued Speech, holds up his finger, and returns to his squad car…

…and takes out a paper with cue words printed on it, replying with his own version of cue gibberish.

OK. A few things to say here.

  1. Remember, this is at Gallaudet. The only university for the Deaf in the world, one that hosts a multitude of sign languages from all over the worlds. It is, in fact, the birthplace of Cued Speech, with a vibrant Cued Speech community in the DC, Virginia, West Virginia, and Maryland area. How hard would it have been to find someone who knew Cued Speech to play as the policeman, or even to have the policeman flag down someone who happened to know both ASL and Cued Speech?
  2. He couldn’t at least have mouthed with the cues? That’s how Cued Speech works– it clarifies lipreading. There is no Cued Speech without lipreading!
  3. What’s up with the paper? It’s not… you can’t just cue right off a sheet of paper without knowing Cued Speech already. Yes, I talk about how you can learn the system off a sheet of paper in a weekend… but that doesn’t mean you can start cueing fluently right off the bat. Again, I think the video would have worked much better if the policeman started cueing fluently, and/or called in someone who knew Cued Speech.

I don’t know if the original author intended to insult Cued Speech. I don’t think so; my impression is that Cued Speech was a handy option for tricking a policeman who most likely only knew sign language. To be honest, I was glad to see Cued Speech getting recognition at Gallaudet! Unfortunately, making up random cues, instead of taking the time to reproduce a reasonably accurate version, cheapened the humor for me.

 


 

On a more positive note, this is one of the very few sign language parody videos I actually liked. At risk of ruining the humor by overanalyzing it: first, her “signs” actually have some relation to what she’s trying to say, so part of the fun is seeing how she acts out several concepts. This requires effort and on-the-spot thinking. In fact, a lot of deaf comedy acts incorporate this element; they try to “sign” without actually signing. Second, while the video pokes fun at both the interpreter and the mayor– especially on the Spanish bit– it isn’t insulting or demeaning to the broader d/hh community (at least, I don’t think). While its execution isn’t perfect, I’d say they got the idea on this one right.

Where the Americans with Disabilities Act Falls Short

The ADA is a marvelous legislative tool. I have, however, noticed a disturbing tendency to rely on it as a blanket solution, or worse, a legal bludgeon. Here’s the thing. In practice, its compliance rests on three conditions:

1) the needed accommodations fall within the definition of “reasonable”
2) the owners are aware of the requirements
3) the owners are willing to comply

Now, larger businesses usually have the money and the sense to ensure that they’re accessible. Smaller businesses, especially those in older buildings… well, it depends.

Take those smoke alarms with flashing strobe lights, for example. A small-to-medium hotel may get a grand total of 1-2 deaf guests a year, if that. Legally, new hotels or hotels undergoing renovation are required to purchase and install strobe lights in a portion of their units, and ideally, they’d do so posthaste because, yannow, preventable death by immolation tends to puts a damper on business and common decency.

But. What if it’s a tiny bed-and-breakfast? What if the accessible rooms are full? Or the hotel is in an older building and hasn’t gotten around to updating the alarms? Or the hotel is newer, but for whatever reason, they aren’t ADA-compliant?

You could always file a Title III complaint. First, though, you’ve gotta collect proof of the discrimination (photos, written documentation, etc.), write a letter, and mail it to the US Department of Justice, where it will be filed along with, I don’t know, 10,000 or however many other cases they’re handling on that given day.

Or, better yet, you can have a sit-down with the owners and tell them, “Hey, just so you know, to make your rooms accessible to anyone with hearing loss– especially older tenants– and ensure their safety, you can swap out your smoke detectors with these alarms and write it off as a business expense. Plus, you’ll be in the clear legally. If finances or labor are a concern, you can start with the legal minimum required and swap out as you replace older alarms.”

However, neither option resolves your immediate problem when the hotel isn’t already ADA-compliant. Let’s say you’ve been driving for eight hours straight, you are in the middle of nowhere, you need a place to crash, and this hotel is the least seediest place in town. Not exactly a plethora of options there, unless there’s an appropriate alarm immediately available and they’re able and willing to install it right away.

Apartments are a bit more clear-cut, but again, that relies on 1) the owners’ and builders’ awareness of ADA requirements and 2) the owners’ and management’s willingness  to accommodate you, rather than give you a difficult time over the “reasonable” stipulation. (It also depends on whether you rent from an individual owner vs an apartment complex.) If and when the apartment does install flashing smoke alarms, you won’t be able to take it with you when you move. So, you’ll have to repeat the process all over again with the next place.

Instead of relying on others’ foresight and goodwill in being ADA-compliant, why not focus our energies on finding solutions that allow for accessibility on our own terms? I reference the flashing smoke alarm because it’s a perfect example for how that gap between ADA mandate and reality can be closed. Modern technology allows us to create portable smoke alarms that we can take with us when we move to a new place, visit a friend’s house, or travel. In fact, Gentex  and BRK both have their own lines of flashing smoke alarms that are portable. Although the ones I’ve looked at seem to be a bit cumbersome (and friends’ feedback confirm this), it’s a start.

This applies to captioning and interpreters as well. I’ve been looking and looking for a reliable transcription app, because straight up, finding a qualified interpreter or captionist– especially for nonprofits, churches, or volunteer events– is a royal pain in the ass. Typically, these organizations don’t have the funds to pay professional rates, and often, things come up last-minute.

While automatic speech recognition software right now isn’t perfect (often not even intelligible), a decent transcription program packaged as a phone app would make spoken presentations much more readily accessible when an interpreter can’t be secured due to funds or time. I can only dream of the day when automated speech transcription software will hit a point that it’s virtually error-free– in fact, I’ve noticed significant improvement on YouTube over the years.

The ability to create devices that can provide access, that we can use wherever and whenever we need it– that, to me, is true accessibility. Not going through a lengthy explanation with just about every vendor on what the ADA requires and hoping they don’t find some excuse to wiggle out of it, trying to determine who’s going to pay for it, or weighing if it’s worth the hassle.

The Art of Disclosure: when do you tell an interviewer you’re d/hh?

In all my nagging at other people for their opinions on when to disclose hearing loss, I’ve yet to find any other d/hh topic so cleanly divided between hearing and d/hh respondents. Hearing loss isn’t something you can really keep on the downlow, even if you’ve got amazing speechreading and speaking skills. At some point, it has to be disclosed. The question is when.

In asking around, I’ve found that the breakdown usually goes as follows:

Hearing viewpoint: Best to be upfront; it has to come out at some point. If they have a problem with it from the beginning, you probably won’t ever convince them otherwise. No point in wasting either your or their time.

D/HH viewpoint: Leave any mention of hearing loss off your resume. If they call, don’t tell them you’re deaf or have the relay interpreter introduce herself. Don’t say anything about it until you get an interview, preferably in-person. (Note: Some d/hh people in my network reported applying to hundreds of positions with no bites; when they removed any mention of their hearing loss—such as having attended a residential school for the deaf—they finally started getting responses. I’ve yet to hear about any of these responses ultimately ending in a job, however.)

My experience: When I job-hunted after graduation, I seemed to get more traction when I disclosed my hearing loss earlier rather than later. Now, I didn’t see any reason why it needed to go in my resume or my cover letter, unless being d/hh could lend strength to that position, like diversity or accessibility. Usually, I’d disclose it when we discussed setting up a phone or in-person interview, saying something like, “I use a relay service due to hearing difficulties.” I preferred to use “hearing difficulties” instead of “deaf” because 1) my cochlear implant does make me functionally hard-of-hearing, and 2) I thought it sounded a bit less intimidating. I also emphasized that visual/text communication could easily substitute for spoken communication. Usually, the response was that hearing loss wasn’t an issue in this job. (Of course, it’s not like they could’ve told me otherwise without incurring a massive HR headache, but they could’ve also opted to say nothing at all…)

Despite what my DVR counselors had advised me, I’d found that I hated surprising potential employers with that information at a phone or in-person interview. It felt awkward, there was always fumbling, and I didn’t feel like anyone were adequately prepared. About halfway through my job search, I decided to just be upfront about it when it came up. Yeah, it probably narrowed down my job opportunities, but at least they were narrowed down to employers that I could safely assume would be open to hiring d/hh people.

(What I did run into more than once was that millennial catch-22: “You’ve got great credentials and we’re very impressed with your writing, but we need someone with more experience.” Go figure.)

Now, I’ve talked to other d/hh people who have had different experiences. So, I invite you to come share in the comments.

 

 

Signing Impaired: the Double Standard

I’ve posted about the use of “hearing impaired” and how it doesn’t bother me, though I do take care not to use it because many of my d/hh friends find it offensive. In the Deaf community, though, I’ve occasionally come across attempts to turn the tables by using the term “signing impaired” to refer to hearing people.

Perhaps ironically, even though “hearing impaired” doesn’t bother me, “signing impaired” has never felt right to me. Sometimes it’s used in the d/hh community as a joke, sometimes as a pejorative. Either way, it’s never made much sense to me. Here’s why:

  1. It comes off as hypocritical. You don’t like it when people use the term hearing impaired, so in turn, you use “signing impaired” to… I don’t know, teach them a lesson? What lesson, exactly?
  2. The way most people use the term “hearing impaired,” they’re just referring to your level of hearing. Despite its overt focus on hearing, it’s not intended to diminish you as a person. “Signing impaired,” though, definitely carries an insulting connotation– in my experience, it is usually intended as such. See #1 for my confusion on what it’s supposed to accomplish, exactly.
  3. It doesn’t mean anything. Ears are designed to hear. That’s what they’re for. If they don’t hear, then they are nothing more than funny-looking flaps of skin on your head. That’s what “hearing impaired” refers to. Hands… well, your hands work fine whether you use sign language or not. “Signing impaired” is more about language proficiency, not physical ability; and that makes about as much sense as calling a Chinese native “English impaired.”

In the grand scheme of things, it’s pretty minor. On the other hand, words have power, and the little things add up into big things  . If we, as a community, want courtesy and respect from others, we need to model it in turn.

Discrimination in the D/HH community

I was asked if I perceived there to be discrimination between various groups of those with hearing loss. More specifically, did I see a difference in attitude between those who have hearing loss through either work or life experiences compared with those that are born deaf or hard of hearing?

My answer was yes, although the discrimination I saw and heard of didn’t necessarily fall along those lines. They had more to do with communication modality (if someone cued or spoke vs. using ASL), and additional disabilities like blindness or cognitive impairment.

For all the isolation and loneliness that so many d/hh people experienced growing up, you would think they’d be more inclusive than the mainstream hearing world. Turns out, they’re human just like the rest of us.

I can still remember the pain in her voice as Candace Lindow-Davies told us, through tears, about how badly her deaf-plus son wanted to fit in, to have friends at his residential school. “Deaf kids can be very cruel,” she said, and I nodded with complete understanding. Kids in general can be cruel, but combined with that characteristic Deaf bluntness… whether it’s cultural or neurological, we really don’t sugarcoat anything.

Moreover, I did some volunteer work with deaf-blind people in college, and I’ve heard some pretty sad stories of deaf-blind people being treated like lepers as soon as they started losing their vision– almost like the other d/hh people were afraid of “catching” the same thing.

Regarding communication modality, I’ve known of d/hh friends getting criticized for being “too English” when signing. While I haven’t really experienced anything worse than pointed disinterest in Cued Speech, I do know of cuers at Gallaudet and RIT who did not publicly share that fact about themselves because of the possible societal backlash. Nowadays, I think Gallaudet is more open-minded, but back in the 80’s and 90’s, especially during the Deaf President Now! movements, it probably wasn’t the best idea to advertise that you knew and used Cued Speech.

RIT, unfortunately, was not quite as progressive as Gallaudet; from what I gather, it is/was very much an ASL-only campus. It was not too long ago that a fellow cuer, Rachel, struggled with getting even captioning access to her classes. The way RIT had set it up was that, if you wanted captioning, you had to pick the one class section that offered it: all the others would provide only sign language interpretation. And forget about Cued Speech transliteration– in 2003, Nicole Dugan had to file a formal complaint against RIT after they failed to provide her with CLT services for two years. (In fact, Dugan had avoided becoming fluent in ASL for two years so that RIT would not be able to use that as a reason to continue using sign language interpreters instead– which I find absolutely shameful on RIT’s part.)

The long and short of it is that, yes, sadly discrimination within the d/hh community does happen. Quite often from those who most strongly claim to advocate for inclusion.

Hearing Impaired = Broken?

Last week, I bought a giant canvas. It did not fit in my car. I spent the next hour or so texting local friends trying to find someone with a jeep or a truck, contemplating the logistics of strapping it to the top of my car, and snarking about it on Facebook.

Batman would not have made this mistake.

behold. my l33t planning skillz.

What on earth does any of this have to do with “hearing impaired”?

Well, I ended up asking the store to hold the canvas until I could get someone with a bigger car. I came back the next day after work to ask the staff if there was a way we could take the canvas apart so it could fit. When we walked to the front of the store, where the canvas was sitting behind the counter, I spotted a note taped to it that read:

CUSTOMER WILL COME BACK LATER
HEARING/SPEECH IMPAIRED

My first thought: “Yay! They left a note so they know I’m the one who bought it!” I didn’t think to say anything until after a very nice and accommodating store representative helped me try to fit the Giant Canvas into my car. When both of us gave up and agreed that I needed a bigger car, I walked back inside, motioned for a pen and paper, and wrote:

“I saw that the note on the canvas [now gone] said ‘hearing impaired.’ I just wanted to warn your staff that many d/hh people find that term very offensive. I don’t personally care, but some people do, a lot.”

The very nice and accommodating store representative apologized– from her gestures, I could tell she knew a little sign and was familiar with Deaf culture– and explained that she had taken down the note for that very reason before we’d carried the canvas out to my car. I reassured her that it didn’t matter to me; I just didn’t want them to have a bad run-in with other d/hh people because of an innocent slip.


The term “hearing impaired” has never bothered me. I used it growing up because I saw it as an useful umbrella term that encompassed all varying degrees of hearing loss. It wasn’t until I took ASL classes in college that I learned its secondary implication for many d/hh people: the idea that we’re broken and/or need to be fixed.

I don’t quite agree with that definition of “impaired,” by the way; I interpret “impaired” as more like “lacking.” You just don’t have a particular thing– or you don’t have as much of it as others do– that doesn’t have to mean it’s broken, or that you are broken. There’s no value judgment in it for me.

I do understand why other d/hh people interpret it that way, though. And I understand the larger picture it can reinforce. What I don’t understand is the level of ire it seems to generate sometimes, particularly when the hearing person who uses that term has no reason to know that it’s offensive to some d/hh people, or why it would be offensive. The thing is, unless you’ve spent some time around the d/hh community (and even then, a somewhat specific segment of that community), you won’t know. And to add to that, to the uninitiated, often “hearing impaired” does sound like the more polite, PC term to use.

Basically, 99% of the time, when someone uses that term, it’s not meant to be hurtful or offensive. It’s generally other d/hh people who use it as a pejorative (“signing impaired,” anyone?), and who object to its use.

I’m not saying that we shouldn’t ask people not to refer to us as “hearing impaired,” or educate them about its implications. Words have power. We would do well to be aware of that, and to respect it. At the same time, should it be taken as an insult if the intent isn’t there, if you have to contrive meaning out of it to turn it into an insult? And how far do we want to go into policing the terms that others can use, especially if other d/hh people use “hearing impaired” to identify themselves?