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!

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.

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.

393: VRI... Sign Language! Access!

This Friday night in NYC my darling Zlotte will be leading a really important discussion at Morton St.:

Important DIRC meeting Friday, January 19th! Your support is needed!

Are you now or have you ever been a patient at Beth Israel Hospital? Did you know that Beth Israel is planning to fire their sign language interpreters and switch to Video Remote Interpreting (VRI) for all their Deaf patients?

How do you feel about using a VRI service during your medical appointments? Are you comfortable working with a TV screen when your doctor asks you how you're feeling? Will you trust the VRI interpreter to understand your sign language and your medical history? Do you want to work with a TV screen when you're getting serious information and instructions about your health?

When Jane Fernandes was hand-picked to be President of Gallaudet University her ASL skills came under discussion repeatedly. Hearing people didn't really understand what the problem with Jane was, and because it was a Deaf university, they pointed to what was different - her use of sign language and her Deafness. It was easier to accept what they already knew to be different as the problem, rather than seeking a true understanding of the issues. It was easier to find a reason to dismiss the concerns of the protest.

VRI (Video Remote Interpreting) uses videoconferencing equipment to present an interpreter on a TV screen. The interpreter is in a different city. When I went to a hospital in Brooklyn one day with a friend and found that they had been using VRI with him, I was curious. I had never seen it before. Another friend is doing a dissertation on the issues surrounding VRI, and I was excited to get my hands dirty, so to speak. My experience was abominable. The hospital staff took an hour to find the equipment, and another hour because "the guy who knows how to hook it up isn't here." The friend understood nothing on the screen, and I wound up having to "deaf interpret" everything. The friend was really frustrated. Why?

1. He didn't understand a three-dimensional language in two dimensions.
2. The technology was good, but this portable VRI technology was still not Sorensen - most VRI doesn't seem to be as high quality as what Deaf people use.
3. They were talking about VERY personal things. Because he'd never met the interpreter before, my friend had no comfort level. Because the interpreter was on TV, he had no way to develop that comfort level.
4. The terp itself sucked. He had no experience with the hospital staff or with this particular person and no connection to the person's history. In the past I've requested the same interpreter for my medical appointments because it makes things a lot easier when you don't have to take a half hour to teach the terp names for things. That's if the terp ASKS - they may just brave it out and fingerspell stuff, and because you (as a Deaf person) are LOOKING AT THE TV SCREEN you don't have an opportunity to try to lipread the doctor and suss out if the terp is correct.
5. The terp didn't understand the patient. He was apparently from Minnesota, and didn't understand the NYC dialect of ASL. (There's correlations to this in spoken language - interpreters do not always understand spoken variation.)
6. Erfo wants me to add that the Doctor was standing BEHIND the patient at this point and prattling on, then left the room. With no visual or audio connection to the patient, they had no reason to bring out their bedside manners.
   

"But he has sign language!" cried the hospital staff, three hours after we started, when the client's 15-minute appointment was completed. "That's access! You can't complain!" But we did complain, and legally: it's the hospital's responsibility to match the needs of the patient, not focus so hard on finding ways to save money that they reduce the quality of their own service. When I was a youngster in the NYC public school system, the school was frustrated with the cost, and to save money once gave me an interpreter - who sat down in my French class and began speaking Italian.

I imagine that's how many hearing people felt about the Gallaudet protest. And like the Gallaudet protest, the underlying problems are very similar. But like the advertisement for the meeting on Friday states, do you feel comfortable telling a TV screen about your health? The most effective health care for Deaf people comes about when Deaf people's self-expressed boundaries, in terms of communication, are established and respected. VRI was initially created as a means of providing access to people in remote areas where there are few or no terps - not to become standard in big cities where hospitals have STAFF who are interpreters. It's expensive, in terms of money but especially time (there were four hospital staff standing around for an hour trying to hook up the television - certainly their time cost more than the interpreter!)

God. One day you KNOW some nurse is going to show up saying "Sorry, we couldn't find the terp, the television, or anything else, but... we did find this!" And when she pulls the signing puppet bear from behind her back and we complain, they'll say, hey, it's sign language: it's access... (Yeah, and they speak English on subway car announcements. Sure.)

Let me close on a personal note. The other week in Florida I was walking with my father on the side of the road. I asked if we could switch sides; he was puzzled and frustrated, but agreed. I noticed his frustration and asked if he understood why I wanted to move - he said yes, because we were now walking on the left side of the road, into oncoming traffic! I explained that as a Deaf person I could see traffic in front of me, but not hear it behind me, so I'd rather walk on this side so I could protect myself. His eyes cleared and he understood. (Then we got into an argument about why I had to be so bloody independent. But that's another story.)