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.

Deafness: Is It Really A Disability?

In college, I was taught about two approaches to deafness: the medical approach, and the cultural approach. Essentially, the medical approach regards deafness as something to be fixed or cured; the cultural approach regards deafness as something to be embraced and celebrated. Now, I won’t lie: after years of fighting to be “normal,” the Deaf community was a welcome respite that helped me solidify my identity outside of my hearing loss. But that niggling feeling remained: it wasn’t the whole story, especially when it came to job-hunting.

Deafness is pretty unique in that it’s one of the few disabilities that affords near-complete independence. We can drive, we can move around, we can hold down jobs in any physical and intellectual capacity. The only thing we– most of us– struggle to do is communicate in a hearing world.

Unfortunately, that last one is a pretty big deal, especially in networking and securing employment; or in seeking information and education. It’s much like being a perpetual foreigner– without communication, you miss out on language, social cues, and local culture. And not everyone is willing to accommodate, or they don’t know how.

In part, that’s what gave rise to Deaf culture. At various points throughout recent history, a bunch of deaf people got together, worked out their own communication and social norms, and out of it came a distinct language and culture. Over time, a social network for education and employment also developed– it wasn’t and still isn’t uncommon for Deaf people to find jobs in residential schools, ASL courses, and municipal social work.

Outside of those niches, however, our options become… more complicated. A whole lot of  service and sales professions– for example, reception, hospitality, and nursing– rely heavily on verbal communication. At least, as most people understand it. Mind you, several deaf people have found workarounds for succeeding in these types of jobs (many of whom are cuers!)*; often, their biggest challenge lay in convincing their employers that they could do it, albeit in a different way. Quite a few have just gone ahead and started successful businesses, notably in Austin, Texas.

These people, however, are a bit of a rarity.

A paradox: if deafness isn’t a disability in most senses of the word, then why do so many of us end up on SSDI? Or worse, straddling the poverty line?

Any objective measure comes up with two answers:

  1. Deaf people struggle to access secondary information in an auditory environment. We don’t usually overhear things like hearing people do; direct communication is how we learn and retain information. This has major implications for education.
  2. It’s harder to convince employers to hire and retain deaf employees at a living wage. We take longer to find jobs, and we get promoted at slower rates.

The best reconciliation I’ve heard for that paradox so far came from this Australian deaf blogger,** who defined deafness as a social disability. Once I thought of it that way, all those niggling pieces in my mind finally fell into place. See, one of my biggest hurdles in the Great 2014-2015 Job Search was networking at social events and job fairs. Imagine a patchwork conversation like this:

Me: So what kind of job do you do?
Them: Oh, I work at …. [unintelligible]
Me: Say again?
Them: [unintelligible] administrations at [unintelligible] in Dallas.
Me: Oooh. Administration? That sounds interesting.
Them: Yeah, we do a lot of paperwork and [unintelligible].

Not really a whole lot to work with, so the conversation peters out. And that happens everywhere: church, work, parties, social events. Building relationships is the whole point of networking, and how do you fluidly do that with persistent communication breakdowns?

The social model also explains why deaf people so often flourish in a variety of roles within deaf/disability/diversity-related occupations. Those occupations are designed to facilitate deaf-friendly communication, which in turn enables deaf people to build personal connections with coworkers, supervisors, and educators.

We’re not disabled, for the most part, unless our environment makes it that way.


*This does not include the relatively few professions where safety unequivocally relies on verbal communication, like armed services, police field work, and firefighting. I do know deaf people who work in these professions, but they tend to be in volunteer or support roles, not in active duty.

**Sadly, I lost the link to the Australian deaf blogger, because I suck. If anybody knows who I’m talking about, please feel free to drop me a line so I can credit him. It’s really an excellent article.

We Aren’t Outliers

“You had strong family support.”

“You went to a good school.”

“You got lots of one-on-one time, didn’t you?”

“You were exposed to other cuers.”

Sometimes, when I tell others about what Cued Speech had done for me growing up, someone will mention the above, as if those factors somehow negate or diminish Cued Speech’s efficacy. It’s like they’re implying that Cued Speech itself didn’t work, that the other factors had to compensate, or that I was the exception that proved the rule.

It’s true that family and educational support are immensely important, and often if not usually a deciding factor in a child’s success. Home and school are where the child spends most of his time. However, communication access and literacy depend highly on what the people in those environments are equipped to provide.

In a residential school, or a mainstreamed program with a strong Deaf presence, everyone is either d/hh, more visual-oriented, or have (ideally!) received training and support to meet language requirements. Staff are able to act as appropriate language models, so that ensures communication access and, to some degree, academic success.

Outside of residential schools, though, getting that access to appropriate language models can be much more challenging– not to mention the complexities of using a manual language to impart literacy in a completely separate aural language. That’s if you have access to ASL; more often, what I’ve seen is a mixture of auditory-verbal therapy and manually-coded sign systems, and the results can vary just as much from very, very good to very, very bad. In fact, many cueing parents took up Cued Speech precisely because their local programs or residential schools were not a viable option for one reason or another.

In evaluating different approaches in d/hh education, we need to look at that approach’s overall results, not just specific examples. We can’t cherry-pick outliers to prove our point. That’s probably why those statements at the beginning somewhat annoy me, because in my experience, success at attaining language and literacy through Cued Speech is the norm, not the exception.

In my experience, signing d/hh people who can write or read well tend to be in the minority. On the flip side, cueing d/hh people who have those odd grammatical or spelling flukes– not typos, but more like what you might see from ESL speakers– are the exception; the rest read, write, and talk like native hearing speakers (with varying degrees of a “deaf” voice). I’ve had more than one person tell me that they wouldn’t know I was deaf just by reading my posts.

The studies on Cued Speech that I’ve read bear this out– in fact, I haven’t yet found any studies with negative results on Cued Speech’s use. (I do recall one with “meh” results in a group of hard-of-hearing students, but that’s about it.)

I suspect that you won’t see such consistent results among deaf signers mainly due to these reasons:

  1. The learning curve involved in picking up any manually-coded or signed system, which demands greater commitment and effort from parents and teachers over the long term, so you’re much more likely to see a wider variation in usage and proficiency.
  2. The linguistic and conceptual gap between sign language and spoken language (or even just two different languages). You can patch that gap somewhat, but it’ll never replace incidental learning through full linguistic immersion (and not necessarily just reading and writing).

This isn’t to make Cued Speech out to be a magic bullet that bestows language and literacy the instant someone starts using it for their kid. What it does do is enable one to visually “recode” a language she already knows, without the delay of learning and translating through a second language. In this way, the d/hh kid is put on the same playing field as a hearing child for literacy and language acquisition, so d/hh cuers are much more likely to pick up spoken/written language at the same pace as their hearing counterparts.

“If you could restore your hearing, would you?”

The first time I thought about this scenario, I hesitated.

As I’ve mentioned in another post, I grew up with the impression that deafness was this great obstacle to be overcome, to be excised out of my daily life as much as possible. To boot, I grew up in a very religious community that was big on faith healing. My mom, especially, prayed regularly for my hearing to be restored, and I went along with it as a kid. So when I started reading news articles about new advances in treating hearing loss…

By all rights, I should’ve responded with a resounding “yes.” But I didn’t. I was afraid that I would be changing myself. This, even though I’d already gotten a cochlear implant and knew that it didn’t take anything away; it just gave me more access. Whether I wanted it or not– mostly not, for most of my formative years– deafness had already shaped my identity. So, when I thought about taking that away… I paused.

But when I dove deeper into it, I realized that regained hearing couldn’t erase my past experiences, which helped shape the perspective and strengths that I have now. I would still think and feel “deaf,” if that makes sense. It wouldn’t make me un-learn ASL or Cued Speech, or stop hanging out with my d/hh friends; why would I have to give any of those up just because I could hear?

On the contrary, when I started speech therapy last year, I started using my cochlear implant a lot more– I mean, really paying attention to sounds around me and picking out what made people tick when it came to music and spoken language. And things started falling into place, and my world broadened just a little bit more. I stayed me, but now I had more access to the hearing world, and more potential to speak for myself without having to go through interpreters or transliterators. And to me, that’s a good thing.

Choosing Your Cultural & Linguistic Identity

Cherokee blood runs strong in my dad’s side of the family. Both my grandparents spoke Cherokee, and my grandfather won awards for his work teaching the Cherokee language. My siblings and I are registered members of the Cherokee Nation, with tribal cards to prove our ancestry. Yes, we have literal, honest-to-God race cards, and I’m playing mine here.

The thing is, I don’t speak nor read a lick of Cherokee, although I’d love to change that this year. I was just not exposed to it growing up. Hence, it’s not my natural nor native language. My physical makeup—other than the neurons in my brain that drive language development—had nothing to do with that. My dad tried to expose us to Cherokee history and culture as much as he could during our annual visits to Oklahoma, and we picked up on some Cherokee mannerisms from his side of the family, but for the most part, I was raised in working/middle-class settings, with predominantly German/Irish/Polish Americans. I live in the South now, and people here can often tell that I’m from the North; that’s closer to my cultural norm. So I think I can safely say that Cherokee is not my “natural” culture. I could learn a lot more about Cherokee, and grow to identify with the culture, but it would still be a learning curve, about as much as if I moved to China and tried to immerse with the natives there.

In that same strain, I am biologically deaf. But I don’t consider myself predisposed to ASL or Deaf Culture, especially Deaf Culture from those more than 2-3 generations before me. My native language is English, and I’m much more familiar with hearing culture than I am with Deaf culture. And I’m not the only one. Due to cochlear implantation and mainstreaming, the d/hh community (including the Deaf subset) has seen much more diversity in the past 20 or so years.

Another thing to consider is that, had the Cherokee Nation required that every one of its members speak Cherokee and live in Cherokee communities, regardless of any other considerations like the living standards of these communities, our access to resources, our interactions with non-Cherokee, our personal preferences, etc… I am quite certain they would have met with strong resistance, especially from my dad’s family. Not because their members don’t value Cherokee language and culture, but because people generally don’t like being told what to do.

I’m grateful that I learned ASL and studied Deaf history and culture. It helped me solidify an integral part of my identity in my early 20s, a time when I think pretty much everyone struggles with that kind of thing. I’m also grateful that Dad took us to Cherokee museums and re-enactments, and had us read books on our ancestors, and told us stories about his childhood in rural Oklahoma. But the thing is, it was all a gift. It wasn’t forced on me, and I didn’t have to trade off one culture for another.

Times are changing, as they always have and always will. I think most of us would like the freedom to determine our own cultural identities, not according to someone else’s cultural ideal.

A Croaking Dalek with Laryngitis.

What’s up with the name?

Long story short, I am deaf. I got a cochlear implant when I was ten. No, my parents didn’t ask me for my input. No, I didn’t and don’t resent them for it. No, it’s not a cure, and yes, it does help.

The title comes from a late-deafened British member of Parliament, Jack Ashley, who got a cochlear implant in his 70’s. He described the sound as “a croaking dalek with laryngitis,” and the phrase stuck with me. Coming up with unique URL names is ridiculously difficult, so I’m copping this one while it lasts.

No, I haven’t seen Dr. Who yet, and yes, I plan to watch the series.

OK, so what’s up with this blog? 

Well. Most deaf kids are raised with sign language or spoken language– which are often referred to as manualism or oralism respectively (quit snickering)– or a combination of both. Now me, I grew up with Cued Speech. Because it’s not terribly commonplace, there are a lot of misconceptions out there about it, so this blog is my attempt at sorting it out.

Cued Speech? What’s that?

Cued Speech is one of those things that is just difficult to explain because nobody has a frame of reference for it; it doesn’t neatly fit into any one box. The way I try to explain it, whilst floundering all over myself (“no, it’s not sign language, yes, it uses the hands but it’s not sign language, no, it’s not visual phonics, I don’t know why they’re different, they just are, no, you don’t need to voice it, yes, it represents sound but you don’t need to SAY it…”), is this:

Cued Speech is a system of visually representing the sounds of spoken language in conjunction with lipreading. It’s got eight handshapes, with about three consonants per handshape, and four movements/placements with three or four vowels per movement/placement. They’re arranged so that sounds that look the same on the lips are assigned to different handshapes– for example, /m/ goes on handshape 5, while /b/ goes with handshape 4 and /p/ with handshape 1. As you mouth/voice the words, you put the cues together like a puzzle, and presto! Cued Speech.

There are plenty of sites out there that explain it far better than I ever could, and they have video too. The National Cued Speech Association is a good place to start: www.cuedspeech.org. CueEverything has an excellent collection of damn near every Cued Speech video out there, at www.cueeverything.com.

What I’ll be doing here is sharing my experiences and observations with Cued Speech, as well as forwarding research or news related to it, on a regular basis (approximately once a week is my plan) until… I run out of things to say, I suppose. Down the road, I’d like to publish brief vlogs in both Cued and sign language. Whichever way it goes, I’ll post all about it right here.