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?

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.

Those Oh-So-Cool Signing Gloves

You know a video’s going viral when at least three people ask or tell me about it in as many days. 

On one hand*, COOL. And surely a good starting foundation for more advanced technology. On the other hand*, you know there’s a but coming…

  1. It doesn’t seem to address facial expression or body language, which are two essential components of sign language. Those two don’t just add flavor; they add meaning. Not sure how you can track these things just yet.
  2. “Pure” sign languages (i.e., ones that haven’t been adapted for speech) also tend to be more spatial than linear, plus the grammar is typically wildly different from spoken language. Even sign systems designed to transliterate speech generally don’t catch all components of spoken language, so I’d expect the voicing to be piecemeal at best.
  3. There’s no reverse translation; it’s sign-to-voice only, so it doesn’t make spoken language visually accessible for d/hh people.
  4.  The translation would probably be akin to running something through Google Translate– if not worse.

More than that, not all d/hh people know, use, or even prefer sign language. Even among signers, quite a few prefer to use transliteration rather than interpretation. Anecdotally, I’ve heard of captioning gaining far more popularity in colleges than sign language interpreting. Personally, while I have no qualms about using sign language to converse directly with other signers, I’ve had way too many interpreting mishaps to trust it for anything beyond basic conversation with English speakers. It’s far too much reliance on a third party’s understanding and expertise for my liking. I’m not that much more optimistic about a machine.

On the other other hand*, I could see these gloves working better for straight fingerspelling or Cued Speech, especially if they were combined with an automated transcription software. Unlike sign languages, cued speech has a finite set of eight handshapes that can be matched with a similarly finite selection of phonemes to produce words. I expect it’d sound incredibly robotic– which would certainly add an extra twist to the blog name, A Croaking Dalek— but there would likely be less potential for word jumble like what you’d get with ASL or Signed English. 


 * I promise these puns are completely unintentional.

In A Perfect World

Some weeks ago, I watched this clip from ABC Family’s Switched at Birth:

Then, yesterday, I saw a Facebook video of a deeply upset Deaf man in a hospital waiting room as one of the nurses held up an iPhone with a VR interpreter on the line:

Transcript, with original commenter’s permission to copy-and-paste:

Nurse: ..can’t be in the video.
VRI (assumingly SIM-COMing): Hello, my name is Kathleen; I’ll be your ASL interpreter #664403
Nurse: I can’t be in the video.
Interpreter: And I’ll interpret everything you say and keep… (not audible due to nurse speaking)
Nurse: You’ll have to delete it if I am, it’s-it’s against the law.
Nurse: Can you see her?
Interpreter (voicing for Deaf patient): Yes. The internet is not .. is very, very slow. I can see the interpreter; it’s very, very slow. It’s not a valid fair communication because the internet is not working.
Nurse: Ok well then you’ll have to tell him our director is coming. You’re our only option. I don’t know what else to do, this is the best we have at the moment.
Interpreter: Ok, um, just for your information, I don’t.. I don’t need to see you. If you could just keep the video camera on the Deaf patient, that would be great. … I only need to hear you, can you say that again please?
Nurse: I just said that this is the only option that we have until our- my director gets to the facility. I understand that the internet is slow, but this is the only thing that I have at the moment.
Interpreter (voicing for Deaf patient): It’s not the only option, period. It’s not the only option. VRI is not the only option because the internet is not working. It’s not the only option. We need to get (unintelligible) here now.
Nurse: OK we don’t have one.
Interpreter: This is the interpreter speaking, could you put the camera lens down on the patient and keep it there. Because right now it’s going all over the place so I cannot see his hands. Could you please stabilize the camera and keep it there. Make it stop moving. (Voicing for the Deaf patient: ) See this is an example: the interpreter can’t see because the camera keeps moving around and around and around. And so do you think this is fair communication?
Nurse: Yes ma’am I understand that.
Interpreter: What’s your name?
Nurse: My name is Tanisha.
Interpreter: Could you spell that for the interpreter please?
Tanisha: T-A-N-I-S-H-A
Interpreter: Tanisha, T-A-N-I-S-H-A, Tanisha.
Tanisha: Yes ma’am.
Interpreter: And what’s your last name Tanisha?
Tanisha: Akins.
Interpreter: Could you spell that for the interpreter please?
Tanisha: A-K-I-N-S
Interpreter: I’ve got K as in Kathleen, I, N-S. Is that N as in Nancy or M as in Mother?
Tanisha: N as in Nancy.
Interpreter (voicing for Deaf patient): So,.. can we go ahead with this appointment? (unintelligible – “I’m fed up with this?”)
Tanisha: If, if that’s what he, I mean if he’s okay with this, until we can get someone here. I-I’m just doing what my director told me.
Interpreter: Can we still get an interpreter to be on the way and use VRI to communicate until the interpreter er.. uh.. until the live interpreter gets here..
Tanisha: Exactly.
Interpreter: It’s already been an hour and a half. So… I’d like to, I would like a live interpreter to come here and uh.. and we’re waiting for an hour and a half. Can you call and request a live interpreter. We need an in-person interpreter.
Other Nurse: [unintelligible]…you can’t be recording.
Cameraperson(?): We are.
Tanisha: You’re going to have to delete that.
Other Nurse: I’m going have to del-
[END OF VIDEO]

Ech.

I have such mixed reactions to these clips.

Legally, both the Deaf man and Daphne from Switched at Birth are in the right. The ADA does mandate accommodations, and there’s probably no other scenario more important than when your life or health is at stake.

Pragmatically… they didn’t really help the hospital find any workable solutions. Honestly, I felt sorry for the nurses in the second video, who genuinely seemed to be doing the best they could with what they had at the time.

But d/hh people shouldn’t have to deal with this!  

You’re right. They shouldn’t have to. In a perfect world, they wouldn’t. But this isn’t a perfect world: internet connections fail; on-site interpreters aren’t available, or take a long time to arrive; the call comes in at 2am; hospitals struggle with budget and staffing limitations.

In all the times that I’ve wound up in the hospital– fortunately none of which were immediately life-threatening– I had an interpreter maybe twice. The on-site one took about an hour to arrive. I didn’t request one; the hospital took the initiative and called one in when I showed up. That is how long it took for him to come in at short notice. The other one was a VRI on an iPad, and that one actually worked really well.

The other times, I either talked directly with the doctors/nurses, or we wrote back and forth. Because English is my native language, I didn’t have any language barriers with the written communication; it just took more time. It wasn’t ideal, but like the doctors and nurses there, I was doing the best with what I had. We all were.

That’s why reactions like these bother me. Sure, they rile people up, but they don’t really change anything about the financial or logistical challenges that institutions face in providing accommodations for deaf and hard of hearing clients, especially last-minute. It’s all complaint and no solution.

Worse, they reinforce some harmful perceptions. First, many d/hh people prefer accommodations other than sign language interpretation. Case in point: I am OK with sign language interpretation for basic conversations, but for in-depth medical explanations, I really prefer exact transcription (and Signed English usually doesn’t really cut it). Moreover, I really don’t want to have to wait an hour for an on-site interpreter to show up when we can have the whole business done in fifteen minutes of writing back and forth.

Second, these reactions can portray a very simplistic, adversarial stereotype of d/hh people as angry, demanding clients– and with the power of the ADA behind them to boot. Yeah, it’ll probably get you accommodations, eventually, but at what price– especially when dealing with institutions that are already overstretched and under-budgeted?

Fundamentally, communication is a two-way street. And no matter which route you go, it’s going to take time, effort, and patience– for everyone involved. This much I can guarantee you, though: being argumentative, confrontational, or otherwise difficult isn’t going to get you a solution any faster– and in some cases, can even impede your communication access.

Cued Speech and Sign Language: Spoken Language Accommodation

Disclaimer: This is not meant to be a value comparison between ASL and Cued Speech. I’m sharing my personal experience with both in different areas, and it depends on several factors.

For spoken language accommodation, my personal preference is Cued Speech, hands down. Not ASL, not Signed English, not CASE, not LOVE.

Since leaving college, I’ve usually used sign language interpreters because that is what is available here in TX, but it really is not my preferred method. Captioning is fine for lecture-based presentations, but a bit slow for discussion-type forums.

It’s my opinion that signed language cannot accurately represent all of the nuances of spoken language on the hands alone. Or if it can be done, it’ll be difficult and cumbersome. That’s why Dr. Cornett designed Cued Speech the way he did: half of the information on the lips, half on the hands, and all based in phonemes, not meaning.

With Signed English, if you already know English and/or have enough hearing or enough context, or you happen to be a superb lipreader/prolific reader… basically, if you have extra support, you can fill in the gaps. Somewhat.

I have had some less-than-ideal experiences with interpreters because my native language is English, and the other person voicing in English, but we have to communicate through a sign language medium, and it’s quite challenging to be precise… especially when the interpreter is used to interpretation rather than transliteration. It’s worse when the interpreter does not have any background information, especially in specialized fields like medicine or engineering. Often (but not always), she can relay that information to me– even if I have to mentally translate it back into English– but if I try to feed it back through her, it falls apart.

Knowing the context is, I think, more essential for sign language interpretation because you are working with vocabulary and semantics. Context does help cued language transliterators too, but I think there is less demand for it, because CLT is word-for-word (well, really, cue-for-sound) and not concept-to-concept. With a CLT, I usually feel like I have a much solider grasp of the other person’s message than I do with a sign language interpreter; there is far less reliance on her understanding of the subject matter or the context.

Cued Speech and Sign Language: Availability of Services

Disclaimer: This is not meant to be a value comparison between ASL and Cued Speech. I’m sharing my personal experience with both in different areas, and it depends on several factors.

American Sign Language beats Cued Speech in terms of availability, especially for socialization and finding real-time accommodations. Most everyone knows of sign language or some variant of it (Signed English, LOVE, CASE, etc.). Although a lot of cuers, particularly those affiliated with the NCSA, are trying to expand resources so it’s more available, Cued Speech is still very much in the minority.

Hence, you can find sign language interpreters in just about every sizable city. Cued Speech… it depends on the area. That said, Daily Cues is working on this nifty Cue Connector that will show you a geographical concentration of cuers all around the world so you can see what the availability is in various areas.

For sure, I know that Chicago, Minnesota, central Colorado, the East Coast, and maybe California and Seattle, have a sizable population of cuers and cueing service providers. Austin, TX, also has a small cue community.

I am the only cuer in DFW that I know of, and was the only known cuer in Milwaukee– maybe the entire state, since I first learned it in 1994 or thereabouts. That isn’t an unusual scenario for cuers, incidentally: being the only one in the school, or even the entire state, that uses Cued Speech– although it’s getting better as we develop more cue communities around the nation.