Friday, July 27, 2007

415: I Can't Watch the NY Times

Sigh. It's been a long month. I'm starting a new career and have no time for blogging. But to this I make an exception... this follows hard on the heels of Shane Feldman's recent blog about the lack of online captioning on CNN.

In the middle of an intense course of study this summer, I decide to purchase the TimesSelect. I love the New York Times and always have. While reading this newfound addition to my computer, I notice the Times has video. Unfortunately, none of the specific videos produced by the NY Times or posted on their website are subtitled.

I emailed their access dept., the TimesSelect people, and a couple others on their list. I'd love to be able to use this stuff or at least watch it myself.

Nope. They don't have captioning. Well, I shot back, do you have a schedule to include captioning? We'd like to do it one day, but we don't know when this will happen. Uh-huh. As Shane implies, this is getting tired. Subtitling comes included with most video editing programs, which means it's free. The only reason not to include subtitles is laziness.

I keep emailing one person a week. If you'd like to email people also, click on this link. What's really ironic? By using the TimesSelect Article Archive, I can go back to 1989 and read every single article of support the New York Times had for the Americans with Disabilities Act.

I guess it's a case of monkey say, monkey not do. But when the entire country is concerned about reading skills of Deaf people, shouldn't we get a little more respect when we're fighting just to get to the point where we have words to read? And, I mean, what about the kids?

Thursday, June 14, 2007

414: The Not-So-Good-Now Cochlear Implant?

17 months. That's one year, five months. Are people implanting children too fast? That's the opinion of one researcher at the University of Haifa in Israel: that there are children who are currently being implanted too early, before the cilia in their ears have time to develop. These children might have been better served by hearing aids, or by being left alone:
He then found another five children who had been referred to him for pre-operative testing. At the end of his clinical research, he identified a "window of opportunity" of 17 months during which deaf children may begin to hear. "A child whose deafness is caused by a malfunctioning connection between hair cells and the auditory nerve should not have a cochlear implant in the first 17 months. Research shows that at least some of these children undergo the procedure for nothing," Atias explained. He added that some of these children only develop partial hearing, which can be augmented with external hearing aids. He is now researching "temporary deafness" among young children, looking for a way to identify those who will recover.

Cochlear implants are wonderful technology, but they are still new technology. I'm still cautious about them, and for just this reason: the unexpected always happens, especially when messing with that piece of marvellous technology, the human body. I remember when I studied in England and the numbers of Deaf children who became infected with meningitis as a result of the surgery started to trickle out.

I'm not against implants, but I think individuals should be given the opportunity to decide for themselves. I was given the choice by my supportive family at the age of 13. Likewise, we as the Deaf community have a responsibility to make sure we look at this info. What do you think of this article? It creeps me out. Even creepier is the fact that JUST as we find out these implants may not be such a boon after all, up crops the next generation, even better-and suddenly implants look even worse:
If the idea pans out in further animal and human studies, profoundly and severely deaf people would have another option that could allow them to hear low-pitched sounds common in speech, converse in a noisy room, identify high and low voices, and appreciate music - areas where cochlea implants, though a boon, have significant limitations.

"In nearly every measure, these work better than cochlear implants," says U-M researcher John C. Middlebrooks. He led a study requested by the National Institutes of Health to re-evaluate the potential of auditory nerve implants. Middlebrooks is a U-M Medical School professor of otolaryngology and biomedical engineering. He collaborated with Russell L. Snyder of the University of California, San Francisco and Utah State University. The two co-authored an article on the results in the June issue of Journal of the Association for Research in Otolaryngology.

The possible auditory nerve implants likely would be suitable for the same people who are candidates today for cochlear implants: the profoundly deaf, who can't hear at all, and the severely deaf, whose hearing ability is greatly reduced.

Or, if you want to read it the way my brain read it, the first time:
The possible auditory nerve implants likely would be suitable for the same people who are candidates today for cochlear implants: the people whose ability to stand up for themselves is greatly reduced.

Which is why language is so important. Without language, how can you stand up for yourself?

Wondering what the future holds - RAINMOUND

Thursday, May 10, 2007

413: No Deaf Child Left Behind?

How does No Child Left Behind affect the Deaf community? The No Child Left Behind program has been receiving heavy criticism over at DailyKos lately. Check out this article by teacherken:
The multiple choice questions on the AP are almost always of high quality. And, like the SAT, there is a correction for guessing: there are 5 answers, and it is the number correct minus 1/4 the number wrong. If you can eliminate one answer guessing has a marginal positive answer, and if you can eliminate two you really should answer. ON the state's HSAs there is no correction for guessing, so I have to encourage my students to answer every question, even if they have no idea of the answer. Further, there are often multiple answers or no answer that is technically correct - the answer the state might want is the Brown v Board overturned Plessy, even though it did not. The students have to look at all the answers and take the one that stinks the least.

Teacherken is highly concerned that regular students will be wasting their classroom time and focusing instead of on their education on passing tests. Passing tests is important, but how important - and how useful, especially if you have to learn a whole bizarre system just to take the test? And what happens with Deaf children? From the American Annals of the Deaf:
NCLB has 10 titles, none of which address the education of disabled children, of whom almost 7 million are identified as attending public school. Three components of NCLB have major implications for all children, including deaf and hard of hearing students: assessment; demonstrated annual yearly progress; and the mandate for highly qualified teachers. The implications for deaf and hard of hearing children, many of whom will not be identified in the present statewide assessment system, are mixed but, on balance, negative.

Oh yes, unbalanced. I would DEFINITELY say unbalanced. Especially when this happens:
But for Corona, the tests simply mean that his third-grade son, Albert, will come home from school tired and frustrated. Albert attends a program for hearing-impaired children at Loma Vista School in Ventura. Last year, he and his classmates sat through six days of tests, only to find out months later that their scores wouldn't be counted.

Their teachers used sign language to give them the test questions a modification that the school and parents said the children "rightfully and legally" deserved. Deaf children, who can't learn language skills by hearing, typically fall behind grade level in reading, they said.

State officials, however, decided that the use of sign language invalidates the scores on reading, language and spelling tests.

As James Tucker said in this conversation between heads of Deaf Schools on the NAD website:

The No Child Left Behind (NCLB) Act’s logic-defying “Adequate Yearly Progress” provisions also put many public schools including schools for the Deaf students at risk.

With all the challenges on the table, the most frightening and daunting challenge is the proliferation of pediatric cochlear implant surgeries. While many children demonstrate improved hearing after receiving cochlear implants, most children with implants are visual learners and need sign language and visually-oriented classroom environments found in schools for Deaf students.

Sure. No child left behind - unless they use ASL to have the test rules explained to them. Thanks Bush! Create a WHOLE WEIRD Uuhif@&@&*!!'ed up system just to test people, then deny Deaf people access to the test-taking information... *shaking head* Worse, it seems to provide no oversight for Deaf schools. Check out this note from this essay on schools and NCLB:

A couple of depressing examples of why I trust teachers' ground-level input over their better-informed bosses' were in yesterday's and today's local newspapers -- and that's probably about as far as anybody else would have to look anywhere in the nation! The July 12 Rome [Ga.] Tribune gives this year's AYP results, and despite all the hype and PR of the past two years, the local schools are, to put it nicely, turning out cheap labor, and that's about it.Today's paper describes the sentencing of our state's previous superintendent to eight years for stealing $600,000 from the Georgia School for the Deaf. The School for the Deaf, for God's sake!

So with a huge government program not providing oversight, should we really be upset when Deaf people show heightened concern about Deaf schools? And what do YOU think about NCLB?....

In other news, it's the birthday of one of my favorite girls today... she knows who she is. Be good, Starlet!

Tuesday, May 01, 2007

QUESTION: How do you contact NAD at their national office?

UPDATE: NAD has contacted me and I will be posting information about our conversation soon!

(gripe)I've been trying to send them questions about VRI on their online contact form but it keeps telling me there's a data error. Nobody picks up on the TTY line. The voice line has a message that people will respond to me via e-mail. Plus - their website is really S-L-O-O-O-W. Does anyone still work at NAD's national office or have they gone fishing? (/endgripe)

I'd really like to know NAD's official position on the use of VRI. I have not heard anything from NAD on this issue and don't see anything on their website (anyone who knows something feel free to respond.)

But honestly - you really need to have live people answering ttys/phones at a national organization serving Deaf people. Anyone else have trouble contacting NAD?

UPDATE: I have not been able to get in touch with anyone after 2 more phone calls but I was able to finally get something through the NAD website form after using Google's cache of the NAD "Contact Us!" website. (THANKS GOOGLE!) In a few minutes I recieved this:
5/1/2007 9:42:37 AM (Pacific Standard Time)

Thank you for contacting the National Association of the Deaf. We will respond to your question, comment, or request as soon as possible.


Receptionist/Information Specialist

National Association of the Deaf
8630 Fenton Street, Suite 820
Silver Spring, MD 20910

So I guess I'll wait and see. I'm sure NAD is trying to limit pointless phone calls but...

Update: NAD has responded. Will let you guys know soon...

412: tuesday morning news & coffee

The Pet Food Crisis: It's worse than you thought. UPDATE: Another diary posted over at Pam's House Blend. How long before this starts hitting human beings?

VRI: We're not the only ones dealing with the VRI issue in hospitals. This is becoming a national problem. To be honest, most Deaf people are not willing to speak out on this issue. Peggy Johnson is different. Reverend of a Deaf church:
Johnson watched a congregant suffer in the hospital with severe back pain, while staff members tried in vain to communicate through Deaf-Talk.

“She had to lay flat,” she said. “You can’t see a TV that way,” she said.

What's been the response so far from DeafTalk?

Deaf-Talk operates in 350 hospitals nationwide, including 13 in the Baltimore area. The company that produces Deaf-Talk has had three complaints from Baltimore Hospitals, said Dave Stauffer, company vice president and co-owner.

“There is one lawsuit in Maryland; everyone else loves our system,” he said.

He categorized Johnson’s church as troublemakers.

“I know which church [The Examiner is] talking about. It’s a deaf congregation and they’re talking about trouble that doesn’t exist.”

Unfortunately this has also been the problem here in New York. You know what the culprit is? DEAF NOD YES. Deaf people don't complain to the administration. Many Deaf people have gotten so used to accepting whatever services are provided that they don't think about or ask for their rights. People who fight back are rare. But Alma Andrews is an amazing fighter.

And here in New York our own fight continues...

And in Japan: Deaf Japanese are swindled in yet another business:
The majority of the invested money was reportedly used to pay off her company's debts, which had grown to 4.4 billion yen following a failed campaign to sell "memo phones" to deaf people.

Two of Kobayashi's employees -- Eiko Machida, 55, and her son, Norikyo, 28 -- were also indicted for their involvement in the alleged fraud. Eiko denied she defrauded the deaf people, but her son acknowledged doing so and admitted he tricked his clients into handing over their money.

With all of the pyramid schemes and business deals floating around the country lately... are Deaf people just gullible, or so greedy they have to try to make a buck - who knows! The Japanese scam was for spa memberships - maybe Deaf people just need to be pretty.

And how was the news in your week?

Saturday, April 28, 2007

411: Firm of Scratcher & Low Leaving RNID; DeafRead Too American?

I kept trying to find time to write about this, but life once again overwhelms me! But this is very important news and recent developments make me think it's important to provide some context. The RNID is the largest charity organization for Deaf people in the UK, claiming to represent 9 million Deaf and hard of hearing people - think the largest GOVERNMENT nonprofit. They provide tons of services for Deaf people in the UK. Scratcher, also known as James Strachan, was a source of a lot of controversy - and a much clearer-cut case of audism than our own Gallaudet protest. You can read Doug Alker's book about his own experiences, Really Not Interested In the Deaf? (also with video in BSL.) You can also catch up on the news at GrumpyOldDeafies where alison did an AWESOME job on the news roundup.

Doug Alker after his experiences working at RNID became Chair of the British Deaf Association. He was the chief executive of the RNID until he was replaced by Strachan. From The UK Guardian:
So fraught has been debate on this question that on the appointment of Strachan - who lip-reads and speaks, rather than uses sign language - the RNID was plunged into a bitter internal feud. Supporters of the displaced chief executive, Doug Alker, a signer, accused the organisation of pandering to the "oralist" school that encourages deaf people to lip-read and develop speech. Three years previously, after the departure of Stuart Etherington, deaf people had staged demonstrations to persuade the charity to appoint a deaf chief executive such as Alker, reflecting the growing sentiment among "users" that nothing should be done about them, without them.
Basically Strachan seems to have oppressed signing Deaf people in favor of oralism, technology, and has connections to corporations. He did not support the BSL recognition movement. He didn't like having to allow a diversity of opinion and didn't respect signing Deaf people. He doesn't sign himself. While I was in the UK, there was also a lot of controversy over the appointment of Dr. John Low, a man with ties to cochlear implant corporations, as chief executive of RNID, and there were in fact protests on the street, and the Deaf Liberation Front met with Dr. Low and drew up a list of 5 demands. The cartoon below was published in Federation of Deaf People Magazine and shows public sentiment:

Imagine Jane Fernandes had been appointed President of Gallaudet University and imagine after five years she left with Paul Kelly. Imagine the kind of atmosphere and potential for positive change. This is what the Brits are experiencing now.
The reason I finally forced myself to sit down and write about this is because of the concerns raised by Alison about how DeafRead's methods of filtering affect its audience. This is a HUGELY important post which everyone should read. People need to remember that there are people at DeafRead making choices of how to categorize the news. Their definitions don't necessarily have to be the same as yours. In this case DeafRead have apologized and promised to learn and improve, and you can see the up-front responses from DeafRead staff in the comments of Alison's blog. (It's cool seeing people respond directly, isn't it?)

I have personally had some experiences where my blogs don't appear on DeafRead. This is mostly when they feel my blogs are advertisements - reviews of performances are often problems. I'm divided on this, since I'd like to expose people to criticism of and material about Deaf art. (And besides, I'm not always complimentary!)

I think sometimes we have to be content with the fact that there are going to be situations as the Deaf blogosphere develops in which there is no clear "right" or "wrong." But it would be nice if the Deaf community was global enough to recognize international news more readily. On the other hand, how long have we had the internet?

Maybe we need a global DeafBloggerCon with a panel to develop directives on how to shape internet to improve relations in the global Deaf community so we can develop a truly international response to ...

*sigh* I so wish I was going to Spain this summer.
Note: Thanks to Rob Wilks for some feedback on this post!

Tuesday, April 24, 2007

410: Late Night News and Coffee Roundup

I had way too much curry last night, so I had some extra time to check out the news...

OBI-WAN, PROTECT ME DEPT: OK-WARN is a new emergency service specifically designed to warn Deaf people in case of emergency:
"About 80 percent of the deaf and hard of hearing population feel uncomfortable because they feel they don't get the proper notification in an emergency event," said Comanche County Public Information Officer Chris Killmer.

That's where OK-WARN steps in. OK-WARN is sponsored by the Oklahoma Department of Emergency Management and the National Weather Service--Norman Forecast Office. OK-WARN will send out a page to pagers, cell phones, even email when an emergency or weather event occurs in your area.

I believe they're starting to do this in cities across America. Isn't technology wunnerful? Geo shares his perspective.

HOT GERMAN BOMBSHELL WILL BLOW YOUR MIND DEPT: In the San Francisco Gate, a cool article about a Deaf therapist...
A doctoral candidate in psychology, she's doing her internship at San Jose State University, where she sees 16 to 20 students per week. Some are vexed by relationship problems, others by the stress of exams and heavy course loads. For foreign students, loneliness and cultural isolation are big issues.

They confide in Ulrike, even though she is deaf and requires a sign-language interpreter to be present at each therapy session. Deaf since birth, Ulrike came to the United States from her native Germany 21 years ago. She's fluent in American Sign Language, or ASL, but says she can't lip-read English speakers the way she can German speakers.
STILL HAVING TO PROVE ASL IS A LANGUAGE DEPT: It's old news to most Deaf people that we spend a significant portion of our lives having to convince and re-convince others that ASL is, yes, a language. Banjo and Ben Vess take their turn stepping up to the plate. (I want to include some hearing people in the capital D crowd - my friend the Butterfly once, in medical school, contradicted an idiot who said that Deaf people couldn't think because they couldn't speak to think and therefore didn't have language to think with, or some such nonsensical bullshit. So you see, it's not just us.)

YOU CAN'T PUT THAT UP YOUR NOSE DEPT: DeafAdvocacy.Org discovers the government actually blocked something related to cochlear implants... what do you think it all means?
409: Sprummer?

Too hot for spring, too cool for summer, check out this panoramic photo of thousands gathering for sun and fun in the city: The Sheep Meadow in Central Park, one of the undoubted benefits of being a Deaf New Yorker. My first attempt at using panoramic 'stitching' software - I tried Calico 1.3 on the Mac, and I think it did a pretty good job, although I notice some ghosting, and there's a pretty big chunk taken out of the lady walking by the tree in the center. For now enjoy! (Warning: Big image!) (And please post recommendations if you know better Mac stitching software...)

Each year on Earth Day, I make sure to go to Grand Central's Earth Day Festival, and get pizza from Two Boots, which has arguably some of the coolest pizza in NYC, although for me the best will always be from Brooklyn.

Happy Belated Birthday to Wally, who flew to England to care for and support a friend undergoing surgery and chemotherapy instead of have one of his epic birthday parties...

Sunday, April 22, 2007

408: RANT: We Can't See the Jailbirds Signing

So Daphne Wright's story has come to the next chapter. The Argus Leader reports:
Daphne Wright, spared a death sentence by a Minnehaha County jury, soon will join five other women serving life without parole in the South Dakota Women's Prison in Pierre.

Wright, 43, is deaf. While state Corrections Department officials say they'll make accommodations for that, in most respects the Sioux Falls woman will be treated the same as the other lifers and for the most part, the same as the other 320 or so inmates in the prison at the east edge of the capital city.

"The same?" Just once I'd like hearing people to understand that when you put a Deaf person in jail you condemn them to several years of enforced and almost total isolation. I'm just saying. I think jail is a bitch for Deaf people, much more than for hearing people. Does this mean Wright doesn't belong there? No, she does. But...

The Alternative Solutions Center talks about this same issue:
As deserving of their punishment that some Deaf criminals might be, none of them deserve the cruel and unusual punishment of inaccessible communication during their prison time. Even with the ADA and constitutional guarantees, too many Deaf prisoners have their rights violated every day. They are denied access to certified sign language interpreters for court hearings, disciplinary meetings, and educational classes. Deaf prisoners have been punished unfairly for not following guards� orders because the guards did not know they were Deaf or were unable to communicate with them. Many prisons lack flashing light systems, TTYs, videophones, and captioned televisions. Deaf prisoners also face dangers of physical abuse and isolation.

It's more than just that though: they lack regular and consistent access to any of the rehabilitation facilities afforded to normal prisoners. Unless jails suddenly start having ASL interpreters available - or require all their prison staff to learn ASL - Deaf prisoners probably won't get the same kind of rehabilitation and preparation-for-release training that prisoners who can hear can access. This demands a bit of pity for the prisoner, but also worry - is this person ready to be released to our community?

Oh, yes, legally the jail is required to provide such access. But debates about what access is necessary - debates about whether the cost places undue burden on the jail - and of course the never-ending obsession some hearing people have with saying "Those Deafies just want everything and never stop complaining!" - are sometimes insurmountable obstacles. But it's not just for the benefit of the prisoner - it's also for the benefit of the communities to which that prisoner is going to be released. Deaf Civilians have a responsibility to make sure that access happens in prisons, because the prisoners are eventually going to be released to the Deaf community.

This is not just an American problem. In the UK, the BID Services with Deaf People have a "Deaf Prison Project:"
The aim of the project is the reduce the sense of isolation and the Double Sentence experienced by Deaf people within the Criminal Justice System, primarily those who are in prison, by improving access to information and services.

Prison was also the subject of a Deaf TV Programme Soap Opera called VEE-TV in which one of the main characters, Nicky showed with agonizing clarity what a Deaf prisoner's experience could be like.
Because of bad behaviour, Nicky, who is in prison after a string of incidents culminating in the theft of a computer from the college, has been transferred from an open prison to one with a much harsher regime. The prison officer warns him to keep in line, but Nicky can’t lipread or understand what’s being said. His incomprehension is interpreted as insolence.

Wright will be in jail for life. While I feel her crimes were such that she needs to be there, it's hard for me to see how this system helps her rehabilitate and change. (And isn't that the point?) If anything, the enforced social isolation might make her more dangerous, and might be a danger to her mental health. Just wish I had an easy solution.

Thursday, April 12, 2007

407: Poll Results: Deaf Economy?

So the poll results look really interesting at this point! Of course this is totally unscientific, but still fun to do! I've left the polls up in case more people want to join in, but at last counts:

12% unemployed is almost three times the national average. And this isn't even taking into account some interesting points - that my blog is a blog and therefore you have to have a computer to see it, for example, limiting my population to those who can afford a computer or have access to one...

61% of respondents feel the effects of a difficult economy. Nobody was able to buy Benson Hall.

This question was inspired by some reading about the gender wage gap in the USA. Surprisingly, almost half of respondents felt they earned less than their hearing peers. You'll notice the numbers are lower for the last two questions: some of the respondents don't work, and some of them might not have felt comfortable answering this question.

12% find it impossible to find work... but a whopping 45% of DITC respondents feel their chances of finding/keeping a job are better than in the past. I spoke about this with one friend whose interpretation is that Deaf people are guaranteed token positions - but often have a hard time moving up or showing their abilities to the boss to get a raise.

What do you think it all means?

Tuesday, April 10, 2007


Please take these 4 confidential informal polls! I'm curious to poll Deaf in the City's Deaf, deaf, and hard-of hearing readers to see the state of the Deaf economy in America. So check out the poll and please respond! (It is COMPLETELY anonymous.) People do not even check for Deaf on the US Census, so I am curious to find information about Deaf America...

Are you currently:
Employed full time.
Part time.
Free polls from

How are you doing financially?
I'm doing so well I bought Benson Hall.
I'm able to save money and plan for the future.
I can save money, but any emergency would kick my ass.
I'm breaking even.
I think I owe T-Mobile something or other.
I'm so deeply in debt I have to ride my bike to make electricity while I VP.
Free polls from

If Deaf/deaf/hard-of-hearing, do you...
Feel you earn more than your hearing peers (people with same job?)
Feel you earn the same as your hearing peers?
Feel you earn less than your hearing peers?
Free polls from

FINAL: How would you rate your job security OR your chances of getting a job?
Better than before, very good!
Not as good as before, but okay.
It'd be tough/I spend all my time in programs
I could lose my job any time/It's impossible to find work!
Free polls from

Thank you for your responses!

Saturday, April 07, 2007

405: Murder Will Out

But Ridor has a good point about needing to have a Deaf juror.

There's been a lot of furor over the Daphne Wright case. A lot of Deaf bloggers are complaining that the trial is unfair, especially the always-great MishkaZena, who here asks for native ASL users to evaluate Daphne's ASL skills and voice their opinions on her need for a CDI (certified Deaf interpreter, a Deaf person skilled at communicating with Deaf people of all language levels and usage in American Signed Language who would ensure the defendant understands everything clearly.)

For the record, I agree with them. Yes, the evidence is strongly against Ms. Wright. I think she did it, for what it is worth, although I am not there and it is not my place to judge. But irregardless of her actions, she still has the right to a fair trial and there should be a right way to do it, and I think one of these ways should be to include a Deaf person on the jury, at least! It's not just about making sure that there is a jury of peers, but also giving the jury the benefit of the information from someone inside the culture.

I admit the evidence seems strongly against Ms. Wright, but the jury is asked to sort of be detectives and sift through lots of information to the truth.
Suppose there were a trial of a Deaf man and one of the points against him was he did not call 911 for help. If there is a Deaf person on the jury he might say, well, if there was no TTY around, how could he call for help? And that's a point the jury might overlook. Deaf people don't tend to think about running to the phone immediately.
Or vice-versa - a Deaf juror might be able to see a defendant signing in their native language and "catch" a lie where an interpreter would not. They could independently inform the group and the Judge if the interpreter is doing a good job. They would be able to explain certain slang phrases in ASL to other jurors better than an interpreter. For the same reason, a court SHOULD want a Deaf interpreter. The court turns this down because of 1) cost and 2) fear of giving too much support to the defendant. But it is silly because the Deaf Interpreter can be the ally of the court too and help get at the truth.

I suppose I think of having a Deaf person on the Jury as equivalent to giving the Jury its own Deaf interpreter... as well as provide the Jury with a more accurate view of the Deaf defendant, their facial and signing expressions... and any witnesses who may be Deaf... and any family members, whether Deaf or hearing...

On the other hand, you could also claim that the Deaf community is so small it's impossible for any Deaf community member to be impartial. Can you imagine?

Thoughts? Have a good weekend.

P.S. Someone asked about RSS feeds - I have no clue how to use those or post them on the website, if anyone wants to explain feel free!

Thursday, April 05, 2007

404: Deafhood and the Media

Have you been following the commentary about that Law & Order episode online? It's interesting seeing what people's reactions are... I notice a lot of aggressiveness in the Deaf community, with people clamoring "Everything must conform to MY idea of the Deaf identity" – or to some imagined ideal Deaf person. To me this is like someone saying the same thing about Black identity and woman identity: “Everyone must be like THIS to be Gay, like THIS to be Christian”, and to me people are saying this for much the same reason: fear. People are afraid, so they seek control. But this is counterproductive. Bernice Johnson Reagon* once said “There is nowhere you can go and only be with people who are like you. Give it up.”

She also said, “If you're in a coalition and you're comfortable, you know it's not a broad enough coalition.” The American Deaf community is nothing if it’s not a coalition, a melting pot of people of complex ethnicities and identities and diversities united by the common bonds of experience as Americans, a language, and a history. It makes sense we would deal with being Deaf in different ways. To really understand Deaf people and Deafhood, you have to let go of your personal illusions. These illusions are made by the baggage which forms our lives–the attitudes we encounter from doctors and priests and family members and each other which we react to, take in, accept or reject. We've moved, in human understanding, from the religious perspective to the medical perspective to the sociocultural perspective, and garnered our very own cultural and personal baggages from each. By understanding ourselves we get rid of this baggage. We discover our Deafhood. We find out what's been packed away. Like those exhibits at the Museum where you start with the Universe and end with enlarged microscope photographs of atoms and electrons. The outer to the inner.

But by focusing too hard on other people we are counter productive. So many of us have our own set beliefs delineating what it means to be a Deaf person–I've got my own, I'm honest about it. They're sometimes helpful, because they're part of our personal identity constructions. For example, I believe a Deaf person should stand up for Deaf people's rights, because by extension I stand up for my own. That's part of my identity construction of a Deaf person. And a lot of what I’m reading online is anger about the identity construction of specific Deaf ... television characters. What we saw on Law & Order was a well-researched and FICTIONAL story about a crime, one that broke some stereotypes by portraying a Deaf person as an active antagonist. Much criticism of the show was based on the fact that people couldn't see the situation happening in real life. The fear, apparently, is that hearing people will watch Law and Order and automatically think all Deaf people are hiding automatics. People fear this episode will create another stereotype for us to have problems with as Deaf people. I am not so sure. People know this is fictional. I watch the Sopranos, but I certainly don't think every Italian in a track suit is a mobster.

I think a lot of people were looking for this show to validate their identity construction of Deafness, and unfortunately that's impossible. Everyone has their own identity construction. The question should be, did you relax and enjoy the movie like you enjoyed the even-more-unrealistic Spiderman, or did you put the weight of validating your entire personal cultural identity on one episode of Law & Order (or History Through Deaf Eyes, which got similar criticism for including Deaf people who graduated from Clarke?)

One example of this is comments I’ve seen about how characters in this episode had varying levels of speaking ability. They were concerned people would walk away with the idea that all Deaf people could speak if they wanted to. Therefore, the logic goes, no Deaf people on television or in the movies should speak. Yet there are Deaf people who do speak! Today we call them hard-of-hearing; in Dr. Ladd’s book he describes the BSL term as DEAF-CAN-SPEAK, which might be considered more Deaf-friendly. So this identity construction IS possible. To the people who are complaining, it just isn’t their identity, and it might be threatening to their identity. Like Bernice Johnson Reagon said, they aren’t comfortable. They find themselves in a coalition, and it is difficult. Some things they see go outside of their boundaries of comfort. Some of them may go back to memories of pain. And one of the most important things to remember during all this is that their discomfort, their pain, and their perception that there is a threat must be respected! The thing is difficult!

Other cultural groups have exactly this same problem, which is cool because, you know, parallel experiences are yet another validating stamp on the passport of Deafhood. Black people were very frustrated by the portrayal of Black people on television, and in many ways still are, declaring stereotypes unfair just like we have been. So has the Gay community; so too did women in the past – and there was a day women weren’t even allowed on stage, and all women were portrayed as simpering, huge-breasted fools by men who knew little better and little else… (The first Juliet Capulet was a boy.)

Another major criticism of the show I saw while reading comments and essays was that the storyline focused on an issue polarizing to the Deaf community. I think that’s an unfair criticism–the show generally tackles tough issues. Should they change for the Deaf community? Do a Google search for Deaf and Cochlear Implants come up almost immediately. I think if people were able to suspend their disbelief a little instead of scrutinizing every minor detail they'd probably have enjoyed it just as they enjoyed every other episode. (And how much of Law and Order is realistic anyway?) The cool thing is that I bet quite a few hearing people did, and learned a lot about Deaf people as a result. But I do wonder, after all this: are we doomed to these battles on identity and politics? Is it possible that the personal and the political, in the Deaf community, are so closely tied they can't be separated? Time will tell....

*Ms. Reagon is part of Sweet Honey in the Rock, which includes an ASL interpreter in its roster for tours, and performed at Gallaudet University.

Tuesday, April 03, 2007

interlude: are you deaf? take this survey!

UPDATE: I didn't mean to appear discriminatory in this post! Hearing graduate students should feel free to advertise too...

Take a ten-minute survey! From a grad student friend of mine, Mel:

Hello dear friends,

If you are DEAF, I am calling upon your kindness in hopes that you will take 10 minutes to copy/paste (or click) this link, into your URL and complete a very short multiple choice survey about the barriers that Deaf people experience in terms of accessing mental health treatment. It's for my thesis, so I need at least 30 responses in the next month, and anything you can do to help will be repaid by the karmic forces that govern the lives of graduate students. ANY Deaf person from any state, any educational level, any language usage, and so on would be welcomed as a respondent.

Please forward this to every Deaf person in your address book. When you follow the link, your responses will be entered completely anonymously.

Thank you in advance,
Mel Whalen

Deaf people doing research on Deaf people for the betterment of Deaf lives? Rocks! DEAF ROCKS! DEAF PET ROCKS! DEAF PETS ROCK!

Other Deaf graduate students doing projects? PLEASE! Feel free to advertise any surveys, links etc. in the comments!

Wednesday, March 28, 2007

403: ASL Paradoxii

My own response to Allison Kaftan's "Silent Hands Sculpt Epitome of Beauty... Not," with a nod to the Deaf Pagan Crossroads.
ME (after being told how beautiful my sign language was): Do you know there's over 100 different signed languages?

HEARING PERSON: No, really! That's amazing!

ME: And few of them make any sense to each other, they are all completely different.

HEARING PARROT: That's so stupid! Deaf people should only have one language!

ME: You would destroy that much beauty? (Walk away)
But then there's:
DEAF PARROT, SIGNING VERY FAST TO SHOW HE CAN: Me use only ASL! No English! English hard!

ME: Well, yes, but they're both languages, and therefore English is as beautiful as ASL, just sorta... leaky. Dribbling.

DEFF PERRAULT: But ASL have own grammar, own structure, own vocabulary, etc., etc., same English! (smiles, as if he's proved a point)

ME (pause): So... why is English so much harder? Do you know any OTHER signed languages? What do you think of BSL? LSF? If we're a cultural group do we still have the right to demand interpreters under the Americans with *Disabilities* Act? But then don't we gain rights under language charters? My point is, if we're saying we're a culture and a language group, don't the boundaries change?

DEAF MAN: No! Because we're Deaf! We have to have rights!

ME: So we need a totally new group, because we're not disabled, but we're not just a culture, either? (And maybe we do.)
HEERING PEEPUL: ASL! (siiiiiiigh) So pretty!

RAINMOUND: Can I tell you a story about sign language?


RAINMOUND: Do you know in the old days signed languages were the inspiration for what we know as magic? Witches knew signed languages. They were wise old women and healers who would go round the country and be nosy and check on people, and being nosy and intelligent they could talk to Deaf people. Witches would meet the poor Deafie in the woods and bring him food and dance with him and sign with him, and the jealous townspeople would say, See that witch, she goes to speak with the Devil, the duyvil, the Deaf-ill, the Deaf man, we must burn him, we must end her, we must drown her heart... They hated the nosy old ones who were smarter than they were and far more pitiless so they said, knowing perfectly well the truth, that the moving hands were witchy gestures, and they had their excuse and burned the scary gesturing witch but they never caught the Deaf man, who ran naked through the woods and through the high alcoves of roaring trees.

Deaf people never forgot the witches, and the witches never forgot the Deaf, and even today Deaf people are blessed always with the wonder of a witch's last dance, all because they could speak our language, all because these hands had meaning... and witches, even on television, still twitch their noses and wave their hands...

DID THEY EVEN UNDERSTAND?: But... sign language is SO beautiful!
And then there's:
DEAF WOMAN: I not trust VP (videophone) interpreter, no! But I want to communicate in my sign language!

ME: But you have to accept that not all hearing people have VP. Suppose you accept go ahead VP, must accept ASL interpreter will see your SSN number!

DEAF WOMAN: No, no, no, me not accept, no! Must direct VP to bank with my beautiful sign language!

ME (exasperated:) Fine. How you think the bank person will understand you, with your beautiful sign language?

DEAF WOMAN (pause): Can they get an interpreter?
And so, to quote Kurt Vonnegut: And so it goes.

Tuesday, March 27, 2007

402: Guest Review: Garrett Zuercher's "Judgment Day"

Last night I had various personal committments and couldn't go see a reading of Garrett Zuercher's "Judgment Day," accordingly, I asked Erfo to give her take on the show!
Judgment Day passed without incident: chairs weren't shoved aside, an empty bottle of seltzer water was left undisturbed behind a chair, and the audience was captivated. If Garrett Zuercher has written worthier productions, luckily this was my first. In fact, donning blue metallic Lycra was the hardest decision I made last night.

Though it was hard to determine which parts were song (if watching a voice actor was my idea of fun, I would have tracked the chanting, which in itself was bizarre)—Judgment Day is after all a musical—I found my eyes riveted to what I would normally discard as another Deaf theatre experience that smacked of trying too hard and eludicating too little. Most of the voice actors were instructed to be more English in their signing; that unfortunately worked only when I lipread. The room was small so I was close enough for the luxury. Anne Tomasetti carried the reading. Unlike a story unfolding onstage, this was a very direct connection with the audience, but I can only imagine a heightened experience seeing the musical. Darren Fudenske also leapt into excellence once he settled into character (a terrific multitasker!). Seasoned actors clearly took the stage and charmed the audience.

To feel my shoulders jog with amusement? Surprise of the year. A slipshod lipreading career and thick lenses do not normally a happy Deaf theater-goer make, nor do I understand anything in between ASL and English for sustained periods of time. A well-told story is one of my favorite things and for two hours I didn't evaluate how well I could feel my seat. Just don't ever try mint soda; chewing gum and bubbles can very nearly ruin a beautiful man's Channing-channeling number.
Thanks, Erfo! Anyone else see the show? And now off to another day in the great big city....

Friday, March 16, 2007

401: The Signing Family.

Cool video. Click on the link. It's from the association known as the BDA:
‘Signing Family' , produced by Deaf Association of Northern Ireland, is an information resource for parents of Deaf children, Deaf parents of hearing children and professionals. It is a multilingual information resource parented in British Sign Language (BSL) and Irish Sign Language (ISL) with English voice over and subtitles.

The DVD presents the most current research to demonstrate that a bilingual approach and introducing sign language to your child early on will give them the best opportunity in life.

This is so smart - create a resource based on modern research and maximise your audience to three groups instead of advertising it only to one.

Thursday, March 08, 2007

400: Freedom to Choose Deaf

When we met with the hospital administration they made a throwaway comment which bothered me tremendously - they compared the provison of on-site interpreters to giving everyone luxury cars. I was like, WHAT? To me, it didn't make sense. To me we were fighting for a car that works. 60% of the time, we don't have a car at all, according to statistics from Rockland County Mental Health; there just aren't enough interpreters. But Beth Israel thinks they're giving us luxury cars. Uh-huh. Interpreters are not a luxury - and we must stop people when they call then luxuries. Interpreters are, in many cases, survival equipment, and it is equipment we fought for.

It's always about money. The hospital needs to save cash. Why? Because they're losing some. Eliot Spitzer has been making budget cuts to the support the state gives to hospitals; Unions across New York as well as independent organizations have been contacting his office on this issue. Yet these cuts haven't taken effect yet. But whether they do or not, money is always going to be an issue.

Still - the hospital MUST respect the Deaf person's choice of communication. At the heart we're really asking for the freedom of choice. God, in some ways this is like the abortion argument: People arguing for morality, in this case the morality of fiscal responsibility rather than the morality of chastity. "We have to save money!" Because we Deaf people aren't worth the spending of it, is the unspoken second line. Our freedom of choice and comfort in an issue of such importance as our health isn't worth the cash.

Yes. Yes it is. Yes, we are. But the case must be clear: I have no issue with the use of VRI in the emergency room. There are not enough ASL interpreters. Some of the interpreters we do have, do crazy things like get sick or go on vacation. VRI is a reasonable pinch hitter. We are advocating against people thinking it's Derek Jeter. But the hospital can still save - by giving people choice, instead of taking it away. Here's three points:
  • My first point: the hospital is starting from a baseline of zero (0.) This means the hospital has zero (0) users of VRI. Were they to make use of VRI an option for all regularly scheduled appointments as well as emergency appointments, this number would increase, resulting necessarily in a savings for the hospital.
  • My second point: most of the problems hospitals have, have to do with their complete LACK of policy regarding the provision of ASL interpreters. We all know you need to request 1 week 2 weeks in advance? Most hospitals do it the same day - then get pissed when nobody shows up and blame the interpreting service and use this as an excuse to switch to the "always-available" VRI.
  • My third point: the hospital wastes money on interpreters unnecessarily for jobs that are not strictly interpreting. A hospital with a large Deaf population could, e.g., hire a few Deaf employees the way they hire other groups for diversity. And these employees would be responsible for orientation, support, and basic services for Deaf consumers.
Interpreters go over forms with clients - why pay someone $100 an hour to do THAT? Hire a Deaf person as a counselor or receptionist. Spend a quarter of the money and get twice as much done. Save the on-site interpreters for the crucial parts - doctor's appointments, surgical procedures, pre-operative and recovery. How many hours do your ASL interpreters spend explaining what aspirin is and how many times to take it? Hire a Deaf person instead for education and nutrition. Concerned about compliance in cases of Acts of God? Get a Deaf person to maintain a list of Deaf patients in the hospital and their locations in case of emergency or terrorist attack to organize and facilitate the communication with and evacuation of those patients. Get a Deaf person to ensure compliance. Do you see now? Rather than reduce the quality and quantity of communication at its most crucial points, save money by reducing in unnecessary areas- while at the same time increasing the number of available services - CHOICE - to Deaf consumers.

We're not asking for a free ride. But hearing people never include us in their Big Plans, and then they fail to see what, to us, are obvious ways of saving money. Other ideas?
399: VRI: Finding the Way

Activism is a spiritual effort for me. You close your eyes and stand in a roomful of angry people and find the balancing point; then you make a world dance on it.

Work still continues as we struggle to get to grips with the situation at Beth Israel Medical Center, which I blogged about here, here and here. When people began to send BIMC letters addressing their concerns regarding VRI, a friend of mine was contacted to go meet with the administration of that agency. I was invited to go along with advocate and friends Zlotte.

This was a pre-emptive attempt at education for myself and my community, especially underserved and disadvantaged Deaf people.

The meeting went as you'd expect. We brought two interpreters and met with the COO and Patient Services Representative, and also the woman in charge of the interpreting department. I can sift through semantics better and more quickly than anyone I know. They promised nothing and said they'd decided nothing - what were we concerned about? (Hearing people don't get that Deaf people gossip faster than lightspeed, and any business working with Deaf people had better stay on the up and up, or the old deaf grannies will be reading about it on the blogs these days.)

Our technique was mostly to ignore their denials. Instead we simply brought out legal points and social points. Deaf interpreters, educators, social workers and counselors described what people experienced and the problems with the technology. New problems came to light as we explored ones we already knew.

Bottom line? They took our feedback and will create a policy and share it with us in a few weeks. We asked for a draft, to provide feedback, but got a very haughty "No, feedback, what do you mean, feedback? I've never heard of this feedback stuff. Can you get it out in a restaurant?" So, we wait.

Which is fine. Another important technique is to remember the role and position of these people. But I have my own ideas about how VRI could be positively incorporated in a hospital, under a more Deaf motivation. And speaking truth to power is never out, right?


Wednesday, March 07, 2007

398: Because Learning Rocks.

Sometimes I really miss academia.
The world’s first sign language dictionary available from a mobile phone is launched today by the University of Bristol’s Centre for Deaf Studies. is a video dictionary with over 5,000 British Sign Language signs. Produced by staff at the Centre for Deaf Studies, it is a mobile accessory to people who work with Deaf people, have Deaf customers or just want to learn to sign.

There is also help for parents with signs included that are specific to children like “Father Christmas”, “potty” and “naughty”.

...although why the University chose to showcase those particular three child-related words on its website, I have no idea. Read entire article here.

...and also this whole thing demonstrates how behind in technology we are in the states thanks to "capitalism" which should really be signed MONEY-MILK (just ask me for a demonstration...) Basically, this great technology has been around for AGES, but it would "cost too much" for companies to upgrade (read: we have to get rid of our old inventory) so we're stuck with obsolete crap. Do you know they already have mobile video phones in Japan?

Tuesday, February 27, 2007

397: Served With Hot Milk

I had jury duty yesterday and thought I'd document my experience, which may or may not show how good the NYC system is. I was contacted via mail on February 2nd for an appointment in the morning on Monday February 26th. Concerned about interpreters, but willing to serve cos I believe all the cheezy stuff about loving your country (go, country!) and the spirit of democracy (Weeha!) I immediately called the 1-800 line to discover that there was no easily available option for sign language interpreters - you had to call back during the week to get a live operator.

Does anyone else hate that? Maybe it's no problem for hearing people, but with the buffer time injected by relay, I hate having to make phone calls during the day. I work outside the office much of the time so VPs are not immediately available.

But on the website I found an e-mail address which got a prompt reply, even on a Sunday, and in a very short time I knew the name of my interpreter. So, okay. Good.

On the day I went to 100 Centre St., the location mentioned on my Juror Information Form, and easily found my juror room. One of the five televisions in the large room, which easily sat about 300 people, had closed captioning. I was able to find a seat in front of the TV, but since it was mounted on the ceiling, had to be lying almost flat on my back to read the words spoken by the Judge Judy look-alike advocating national responsibility. But as the terp said when I met up with her later, she was surprised even one had captioning on at all.

Yes, I said later, because she wasn't at 100 C. - apparently I was moved to 60 Centre St. and she believed I was late, when in fact I'd been trying to read closed captioning from 500 feet below. I'm SURE someone tried to contact me, saw it said no phone number, and let the matter drop. As Deaf people get older we realize how many of the problems in our lives have to do with the laziness of hearing people... but I digress.

Luckily 45 minutes after I arrived at 100, the juror facilitator came forth and with a short phone call I was directed to Julia in room 139 at 60 Centre St. Had I been there on time, I would have had to wait - the interpreter had just arrived. But I was lucky, I suppose - we found each other relatively quickly.

We went to the 4th floor to our jury room and ended up chatting, with much in common - one of those pleasant wonderful real live interpreter experiences you have sometimes when you meet up with a good conversationalist. We had seven hours to spend together, so again, lucky: people rarely consider personality in terms of interpreting, but it can make a huge difference.

I wasn't called today, and ended up dismissed. So that was my jury duty, relatively pleasant. I had some other appointments yesterday evening, so I took the time to walk in still-white city snow through the blatantly egotistic marble of the city hall complex and thought how nice it had been to sit and do nothing for an entire day but chat and relax.

My routine has been disrupted for a few weeks as I rearranged my personal life, learned to knit (one of my New Year's Resolutions. I guess I'm getting older: starting to keep them;) and became obsessed with the first and second seasons of M*A*S*H. (Now looking for a used copy of the third.)

Had a disappointment over the weekend - offered to film a bunch of testimonies about using VRI to share with the world the experiences of the people I saw at the DIRC meeting. Did manage to get one person on film, and promises of two more, but honestly, I want so much more... so I'm trying to figure out how to capture video from videophone and I want to offer to do interviews over VP about your personal experiences with VRI! If interested, e-mail me. I'm more interested in HONEST experiences than exaggerated terrible stories.*

Not mentioned on this website before, mostly because of blushing - I was nominated for Best Essayist in the Deafread awards. The award very deservedly went to Elisa of ElisaWrites, whose skill I have seen her develop and perfect over the past year. I had been hoping to show up at the banquet (at which, we were told firmly, we would get TWO free drinks, which in New York City is like half a month's rent at the prices in bars these days) but my ride got pinkeye.

I'll be sporadically blogging over the next few weeks till I get a routine settled again, then hopefully I'll get to try the vlog project. But - argh! - I have another filming project coming up also.

One final point - Breenie gives a good example of a cool Deafhood analysis, looking for her place, her relationship to others, where she came from as a person and a Deaf person and a woman... it's cool. She does this in context with the Gallaudet protest, which is cooler, and shows how one localized event can cause such pondering in individuals around the world
* Seriously - a honest experience is more than enough to show anyone why we have concerns about this. Really, just thinking about what would happen during a blackout or some other sort of emergency is enough to show anyone why we have concerns.

Tuesday, January 30, 2007

396: Wednesday Morning News and Coffee Roundup

Some news from England:
COURAGEOUS Oliver Westbury is launching an expedition to become the first deaf person to reach the North Pole on foot. Oliver will trek 70 miles through one of the world's most hostile landscapes to raise money for deaf children.
But before he can start planning the challenge of a lifetime he needs to raise £27,000.
Want to help him reach his goal? Click here and donate!

And speaking of England, University of Bristol PhD student Mike Gulliver has started his own blog, about his Deaf Studies research. Already he's posted links to lots of interesting information about Deaf communities worldwide, providing a refreshing change from American Deaf Culture:
Hi also to Miles who has mailed me about a presentation I’m doing this Friday at CDS in Bristol on ‘Who owns Deaf history’. Miles is the author of a vast amount of research into the Deaf community in Africa, South Asia and the Middle East. There is a great reference bibliography here , information on South and South-West Asia, on Africa, and the Ottoman Court. Along with Groce’s information on Martha’s Vineyard, this is amazing stuff on early Deaf communities…

I've been reading up, especially on the African Deaf link. Here's a taste of some of the fascinating material available from Miles through the links above:
Some Saharan folk tales from Mali, involving a deaf wife, seem to emphasise the need for patience and understanding (Calame-Griaule, 1987, pp. 452-54, 459, 468), rather than assuming stupidity. While African folklore often links disability or deafness with negative or pejorative beliefs (Odebiyi & Togonu-Bickersteth, 1987; Devlieger, 1994; Sarr, 1981), the physician and ethnographer Hugh Stannus (1910, pp. 299-300) noted a more neutral or positive belief in Nyasaland. The mzimu, which is "a good spirit and does no harm", leaves a dying person's body and goes upward (heavenward, to Mlungu). "The only people to visit Mlungu and come back are occasionally children who die, for a short time their mzimu goes to Mlungu and returns; they live again, but are deaf-mutes."
I've always been fascinated with the concept of a Deaf spirituality. For myself, spirituality has nothing to do with religion or gods, but rather how we try to understand each others' spirit. We each have personality, memories, a reality and perception of our own. How can we possibly understand another person's mind, without being that person? Stories, poetry, literature, art, vlogs are all attempts to do so - and so is research into history and anthropology, which by analyzing what people leave behind, tries to reconstruct the people themselves. Miles' research gives us an interesting glimpse into a not-often-seen literature:
The Kenyan author James Ngugi (Ngugi wa Thiong'o) wrote into A Grain of Wheat (1971, pp. 6-7) an admirable young deaf labourer, Gitogo, "handsome, strongly built", popular with other young men, who cared for his elderly mother, and "spoke with his hands". During a government raid on Gitogo's village, he ran to protect his mother. A soldier shouted "Stop!". Gitogo ran on and was shot. Apparently that character was based on Ngugi's own deaf step-brother Gitogo, shot by government troops in 1954 or 1955. [10] The lengthier battles of an intelligent Ghanaian woman, deafened in early adulthood, are depicted in a largely autobiographical novelette by Frances Serwaa Oteng (1997), set amidst the petty politics of a boarding school for deaf children.
Fascinating. Check out this research - and do give Mike and Miles a shout-out from America - after all, the Deaf nation has many tribes!

Monday, January 29, 2007

395: A Television Has No Bedside Manner

You show up at your doctor’s office. In the past there was an interpreter there. The terp helped you through the intake process; if you had questions you could ask them whilst in the waiting room. If your doctor was late, the interpreter would tell you, and they would make sure that when the so-forgetful hearing people called your name, you would know. (You tell them you're Deaf every time you go. They always forget.)

Now they've decided to use VRI. This means no interpreter meets you at the office; the VRI system itself isn't very portable, requiring plugs and high-speed internet, so they wait till you're actually in the doctor's office to set it up. When you ask why they say it's a small clinic, they have no money, and VRI charges by the minute instead of the usual ASL-interpreter-two-hour-standard. Although you've mentioned accessibility is tax-deductible, they've convinced you to try this for a few months. But now any communication you attempt in the lobby is written; you can’t trust yourself to lipread whatever accent the receptionist has, and in any case they don’t have the patience or time to communicate. After a few short messages they ask you to sit down and be patient. You wait nervously on high alert in the waiting room, afraid to read your book, afraid to miss any movement in case it might be someone out of sight calling your name. You have questions about your insurance and how it works, but you have to wait until you see the doctor. You can speak and lipread pretty well, but you’re nervous about doing so in a medical situation – you do it now and then and they instantly expect you to do it all the time. You tell them you can't, not consistently, but they just nod, and you know they aren't really listening.

You get called in-they forget to come get you, again, but thank Goddess you were paying attention. A nurse writes (rolling her eyes with frustration; she repeatedly tried to speak to you until you fiercely pointed at the pad; she doesn’t want to take the time) that the equipment is on the way and will take another half hour. You have a book but are afraid to read in case someone calls you or something happens and you miss it. Doctor’s visits are important. This is your health at stake, and you’re very aware of how important health is. You wait nervously for an hour and when nothing happens you try to go outside in the hallway, look for someone to remind of your existence. A nurse walks by, sees you, says something like OH! and mouths ONE MINUTE – your insides grate at her patronizing expression, but at least someone’s doing something. Or that's what you tell yourself.

The doctor comes in and talks loudly and isn’t looking at you – you want to bang on the table and remind him that it says PT IS DEAF on the cover of your folder where you insisted on writing it several months ago in the vain hope it would remind people to be aware of your communication boundaries, but you know he would get pissed off and leave and write comments about PT INTRACTABLE in your folder again. So you smile and in a soft voice which he doesn’t hear at first you remind him to look at you when he speaks. He smiles and ignores you. You repeat your request. When he finally gets it he sighs, and you realize he’s frustrated again.

At this point you’re concentrating so hard on lipreading that you forget all your questions. Insurance? What's that? The equipment is on the way, or maybe not – you’re not sure. You’re trying so hard to catch all the words and make sense out of them – maybe a complete sentence will make more sense than just these few words? you think – that it’s hard to find the time to stop him. Finally you ask him to write down what he says and he just writes WAIT HERE on a piece of paper and goes off.

The equipment finally arrives and takes 15 minutes to set up, and another 20 to connect. The interpreter is tolerable, is totally new to you, since VRI interpreters are randomly selected. (You have mixed feelings about this. On the one hand they're not in town, so you have privacy of sorts; on the other hand, you have a new interpreter every doctor's appointment, so many more people know your medical situation. Also, the terp has to ask the doctor to spell out the names of every medically-related term he uses, sometimes several times. Since this has happened every time you've visited, you're kind of used to it - it's amazing the things you learn to get used to. But the doctor hasn't gotten used to it at all, and he stamps his foot impatiently; you're the one in the room, and you get the psychic brunt of his frustration. Deaf people see expressions the way hearing people see sirens.

The doctor informs you of your diagnosis rapidly, and, frustrated at the waste of time, rattles off a list of medications. By the time the VRI terp finishes spelling out everything, the doctor has taken off, and so has the nurse. You couldn’t stop them without taking your eyes off the VRI terp, you couldn’t ask any questions, and you didn’t have the chance to tell him about any new problems. You aren't sure you have the energy anyway: the terp doesn't seem to understand your fingerspelling unless you sign at a tiny fraction of your usual speed, and you have a sneaking suspicion the interpreter may not be interpreting what you say totally correctly. You're divided between paying attention and trying to judge the quality of communication through VRI. The doctor didn’t waste any more of his time making sure you understand what to do; in his opinion that’s the job of the interpreter. He’s fulfilled his responsibility and provided access. What more do you want?

What you want is to check the spelling of some of the meds, since the doctor’s handwriting on his prescription pad is about as legible as Egyptian heiroglyphs, but you can’t. The television is off; the technician has come to take it away. You’re angry, but also exhausted, and sick. You just want to go get the medications, hope they’re the right ones, and go to sleep. On the way out you have a bad scare: you left some document on the floor in the waiting room, and the receptionist, who unbeknownst to you had been screaming your name, came up behind you and jerked you roughly for attention, then pointed, annoyed, at the paper on the floor. Harried, you pick it up and leave, aware of all eyes on you.

On the way out you think fondly of the days when you had a live person and your entire trip was interpreted; when the same interpreter came to all your visits and knew your case and was able to help you far more effectively; when you didn't have to waste so much time on waiting for technology, and when your Deafness wasn't a point of embarrassment and frustration. Oh, people looked at you before, talking the small talk with the terp, but at least they were looking at something you could be proud of: ASL. You don't mind if they use the VRI when they have to, but to have to go through this again and again? Ugh. And the truth is, you know no more about your health than when you started.
NOTE: I think VRI is a powerful, wonderful tool which can and should be used when a live interpreter is not available. It has its place in our lives and rightly so, because there are far too few terps to suit the extant need. But I've heard and witnessed a lot of problems, and I compiled them into this fictional account. Can these problems be dealt with? Maybe. Maybe not. Maybe this story is exaggeration. Maybe it's understating the case. But there are no unilateral studies of the use of VRI in a health care situation. The one study I found online compared VRI... to using tty-based relay systems. It's been used to show Deaf people prefer VRI. But it was not a comparison of VRI to a live interpreter at all! Anyone else have links to studies out there? I hope this fictional account helps us move forward in our understanding of the place and value of VRI, for both doctors and patients.

Sunday, January 21, 2007

394: VRI at Beth Israel: the plot thickens

When interpreters at Beth Israel Medical Center were told they would be replaced with televisions, their responses were incredulous. So too were the responses of Deaf community members at the New York City DIRC meeting on Friday, January 19th, 2007. They claim that Video Relay Interpreting (VRI) systems are meant for emergencies, situations where no live ASL interpreter is available to provide the best mutual access for doctors and patients in the medical care system. So why would Beth Israel suddenly start telling people to watch TV for information?

Follow the money. American Sign Language interpreters are highly skilled hearing and Deaf individuals who interpret between ASL, a manually-expressed language, and spoken English to allow the two groups to communicate. Furthering their value is the fact that they can often communicate with a variety of individuals, from the mentally ill to the genius. Combine this with their rarity - reports claim over 30 per cent of requests for interpreters go unfulfilled in New York State - and you have an expensive commodity. Beth Israel Medical Center has recently come under new leadership, and one of their first steps is... to cut costs, especially in light of State-sponsored budget cuts to hospitals around New York. The plan is to cut the live interpreting staff and replace these with video-conferencing equipment which allows a person at a remote location to video-conference and interpret for the patient. VRI is cheaper in that they charge by the minute, rather than by the hour, something billed as a great savings for the hospital. (In my view this is short-sighted; clients given inadequate information require more visits and more time and money from the hospital.)

The head that takes the blow - this particular part of the blow - is the Deaf community. Beth Israel is not only in close proximity to a residence dedicated to Deaf individuals, it's also possessor of a pioneering interpreting team which drew patients from all over the city. This may now be gone. Worse, the video-conferencing system known as VRI (video relay interpreting) is woefully unequal in terms of access (see my previous blog on the subject here.) And, too, a large percentage of New York's mentally ill Deaf population receive services at Beth Israel, due to their sterling interpreting staff (read about the importance of language to the mentally ill Deaf population here.) So it's no surprise that over 200 Deaf, hard of hearing, and deafblind people gathered for an impromptu meeting to discuss the issues, led by Deaf community leaders who called for calm action. Their options were discussed. There was no community representative from BIMC available, although the meeting had been advertised for days.

But what we didn't know at the time of the meeting is that the actions of Beth Israel may be in violation of the law. What's ironic is that Beth Israel may not be aware of it either. Reader-and fellow blogger-MishkaZena reports that a landmark Department of Justice case previously thought to apply only in Maryland, the state in which it was decided, in reality is effective in all states; a link to the decision is here, and her blog about it is here. She comments:
Since the Dept. of Justice is federal, their content decree in [this] landmark case applies to all states, including New York. This case is viewed as a model where all hospitals must follow.
What were some of the specific issues of unequal access pointed out by the decision? MishkaZena continues:
in the landmark case, Dept. of Justice had deemed that the VRI may not be the best appropriate choice for the deaf, contrary to the hospital's insistence it is. Some deaf people are too sick or too incapicated to use VRI. VRI cannot be taken to other rooms, like prep rooms, surgery rooms, CAT Scan rooms, etc, so it has its own limitations, unlike a live interpreter who can accompany the deaf person to different rooms.
One interpreter spoke about a client who was woozy. She, being the one who could communicate to the person, had to keep them awake if they were to live. Doctors could not get them to talk. Could a television?

The goal of the Deaf community is to ensure that when we need health care, information is being relayed by qualified individuals. Televisions have no bedside manner - and the VRI system was never intended to be used except in other than an emergency situation where a live interpreter could not arrive in time; indeed the DOJ decision which MishkaZena describes specifically states that is the best use of VRI. Some of the stories of VRI experiences I witnessed at DIRC were highly disturbing. I want to close with a story one interpreter told which stunned me, but may help explain why Deaf people like real, live, heart-beating interpreters. Here's the story as best as I can remember it:
I worked with a client who had cancer. The client had been going to the doctor for several years and believed she was going to be well. The doctors knew she was going to die, but they had been keeping this information from her for several years out of fear of how she would react. One day she asked me to explain something when the doctor was out of the room, and... I ended up explaining that she was going to die. The client got very upset and started to interrogate the doctor, who attacked the interpreter. Now this client had a daughter in another country. She kept telling the daughter to wait till she was healthy again before visiting. But once she knew the truth she asked her daughter to come immediately, and they were able to say goodbye before she died.
This kind of intervention, which gave the client information she could not hear but should have had access too, is not possible with VRI. Doctors sometimes have low opinions of Deaf people, possibly reinforced by certain traditions in medicine; they see the problem, not the person. My friend Butterfly (name changed to protect the innocent!) told me once how as a medical student she witnessed another student stand up and ask their teacher if Deaf people could think. Interpreters have often been the cultural link which helps people get over their personal issues about deafness and connect with Deaf people. Should this link go.... what might not happen?

And televisions have no bedside manner. They may be cheaper, but you get what you pay for. To be continued...

ADDENDUM: Deaf blogger Ridor describes his own experience with VRI here.

ADDENDUM: What should you do if you're concerned about these issues? My primary concern is EDUCATION. Sick people aren't always good at advocating for themselves. Have you experienced VRI? Share your experience and your story. Help further the discussion.