White Coat Underground

Before I started medical school I worked at a clinic that served the deaf and hard-of-hearing community. I was the “front office”, greeting patients, answering the phone by TDD/TTY or by relay service (this was before the existence of text messaging, instant messaging, or anything else that relied on cell phones or on the internet—none was in common use). I learned some rudimentary ASL (simple, polite phrases), and was introduced to the deaf community. It was simply fascinating. I learned about the controversies surrounding deaf culture (such as cochlear implants, assimilation, and literacy). We had an interpreter on staff, and many of the clinicians were fluent in ASL, so interpretation service wasn’t usually a problem.

But what about out in the community at large? Sharing the same space as our office was a program dedicated to HIV in the deaf community. The deaf are at increased risk of HIV disease for a variety of reasons, many of which center on communication. Many deaf Americans are fluent in ASL, but not in English. Educational materials aren’t widely available. Communication with the health care community can be a nightmare—for example, “positive” in ASL refers to something good, so if you tell an ASL’er that they are “HIV-positive”, this can be a disaster without a very skilled interpreter. When I was at the center they developed a variety of materials, including a (very explicit) picture book on how one can or cannot acquire HIV.

The deaf often have critical communication needs when seeking health care. Proper communication can be the difference between life and death. So what is a deaf person to do when visiting a doctor? How can they meet their communication needs?

The Americans with Disabilities Act places a great deal of responsibility on doctors to provide proper interpretation services. Court cases have regularly favored plaintiffs when doctors are sued for inadequate access, and doctors are expected to pay for interpretation services for their deaf patients, regardless of cost (or at least effectively regardless of cost). Most doctors have very small businesses and cannot afford to do this. If they provide interpreters, they risk the financial viability of their practice; if they do not, they risk being put out of business forever.

How do we approach this as a society?

Item 1: Deaf people have special needs with regards to interactions with the health care system.

Item 2: The government mandates that proper interpreters be provided for doctor visits.

Item 3: Neither patients nor doctors can afford to provide this service.

Now don’t go telling me that “all you rich doctors can afford to get the interpreter”—we most emphatically cannot. That is a simple fact, and if you don’t believe me, then you don’t. Epur, si moeve.

There is not a great deal of support for an expensive government mandate that would pay for interpreters for the deaf. How do we provide this critical service?

Comments

#1 Blake Stacey
February 18, 2009

Communication with the health care community can be a nightmare—for example, “positive” in ASL refers to something good, so if you tell an ASL’er that they are “HIV-positive”, this can be a disaster without a very skilled interpreter.

Now that sounds like a flammable — or maybe inflammable — situation!
#2 Elissa
February 18, 2009

Kind of sad that we don’t already have something in place to serve the healthcare needs of deaf people…

I’m not an economist. This might be wrong. But it seems to me that things which increase people’s wellness and decrease health care costs are in the best interests of the patient, providers, and insurance companies. It’d be nice if some sort of partnership could be forged where nobody has to bear the entire cost by themselves.
#3 Brian X
February 18, 2009

Would it be practical to help create a medical translator’s collective so that the cost can be spread across a number of practices?
#4 KristinMH
February 18, 2009

Maybe hearing-impaired advocacy organizations can coordinate volunteer interpreters to accompany deaf people to doctors’ appointments etc. I know there are similar programs for the visually impaired – my aunt used to volunteer for one. The volunteer is paired with one or two individuals and helps them with banking, grocery shopping, medical visits and so on.

Though I suppose there aren’t that many people who have the free time to do it that are also fluent in ASL.
#5 Donna B.
February 18, 2009

KristinMH — that sounds like a wonderful idea for retirees who still want to be productive. It’s certainly something I’d do. I’ve donated to our local ‘deaf action center’ but I’ve never thought about volunteering there.

Thank you for the idea!
#6 Kay
February 19, 2009

I’ve seen phone translation services, which allow doctors to buy time with a remote translator as needed. Perhaps as video-conferencing services improve, this will be possible with ASL?
#7 Spencer
February 23, 2009

It appears that a communication mode common to both doctor and patient, writing, is being overlooked in this discussion.
#8 Dr. Free-Ride
February 24, 2009

Ping
#9 Cat Faber
February 28, 2009

Spencer’s suggestion of writing will only work for some ASL speakers; those who are also fluent in English.

As an analogy, imagine that you were learning, say, Russian. Only you don’t ever get to *hear* the Russian, just to 1) learn what it looks like on the speakers’ lips (remembering that only 40% of sounds are actually visible on the lips, even for a skilled lip reader) 2) learn the meaning of the word, and 3) learn its catalog number. The catalog number is random, bearing some relation to what the word looks like on the lips, but none at all to its meaning.

Now in order to use Russian you have produce the catalog number for every single word you want to use. And when people write to you, you have to recall the meaning for every single catalog number.

That’s what it would be like to be Deaf and trying to read and write English.

ASL speakers who are very good memorizers and very good at language will be able to write and read English fluently. I only know a couple of native ASL speakers, so maybe I don’t have a handle on how common this degree of ability is, but neither of them (and one has a Masters’) are very good at writing English. We struggle along with my halting ASL and their patience and occasional production of a written English word. I think we mostly understand each other, but I wouldn’t like to have any lives depending on that!
#10 Emily
March 9, 2009

Maybe hearing-impaired advocacy organizations can coordinate volunteer interpreters to accompany deaf people to doctors’ appointments etc. I know there are similar programs for the visually impaired – my aunt used to volunteer for one. The volunteer is paired with one or two individuals and helps them with banking, grocery shopping, medical visits and so on.

The problem with volunteer interpreters is that they tend not to be qualified interpreters. Anyone who took an ASL class in college can say they know ASL, but they won’t necessarily have the ethical, cultural, and language training that is required of a qualified, certified interpreter. Medical interpreters (and really any interpreters in academic, legal, and medical settings) are required to be certified, so that both the hearing person and the Deaf person know that the message the Deaf person is receiving is the correct message. Medical interpreting requires special training and for one to be very fluent in ASL. As Pal mentioned above with his HIV-positive example, there are many places where interpretation can go wrong. You can’t just relay the information word-for-word; only someone who is very skilled in ASL will be able to convey the correct message.

For background information, I’m Deaf and minored in ASL in undergrad (which required several interpreting classes, for whatever reason).