The Verbessem Brothers: The truth be told

On December 14, 2012, deaf twins in Belgium (Marc and Eddy Verbessem) were granted their wish to be euthanized. It was reported that they had fought for the right because they were going blind and were distraught at not being able to see each other ever again (e.g., http://abcnews.go.com/blogs/headlines/2013/01/belgium-euthanizes-deaf-twins-going-blind/,  http://www.ibtimes.com/deaf-twins-euthanized-belgian-brothers-marc-eddy-verbessem-wanted-die-because-they-were-going-blind).

They were 45 years old, lived together, worked as cobblers, and used home signs to communicate with each other and their family. From this, I assume they weren’t connected with the Belgian Deaf community (Fevlado). They were born deaf, and a few years ago started losing their vision to a genetic form of glaucoma. It was reported that they would have, within a short time, become completely blind.

Marc and Eddy Verbessem

They searched for 2 years to find a doctor, and they fought for the legal right to be euthanized. (Belgium law allows physician-assisted suicide, but usually the patients are terminally ill.) Their family was against it, but were finally convinced that this was what they wanted. One of the reports said the twins were concerned about being a burden on their family. They were also worried that they would be institutionalized if their parents died before them.

It is not my place to judge or second guess them. I wouldn’t want anything that I said here to bring any more grief to their family. If they have been fighting for this for a few years, they had time to change their minds, and others could have intervened to show them other options. The one thing that was clear to me in what I read was that their minds were made up. But the rest of the story just didn’t feel right. It is an easy mark for sensationalism because it is controversial. Do you support doctor assisted suicide? Would you support it in the case of terminal illness? What if you had a condition that would make life intolerable?

I know that isolation and loneliness can be intolerable. A friend of mine with genetic hearing loss in her family told me how several members of her extended family had committed suicide over the years when their hearing loss had become severe enough that they were cut off from family and friends. These people weren’t connected with a hearing loss community, weren’t aware of other technology beyond hearing aids, and weren’t connected with anyone who could tell them that there were options for coping. Even though they had jobs, maybe Eddy and Marc didn’t have a community outside of their family. Isolation could have been a very real fear for them.

I don’t know what the services are like in Belgium. For that matter, services in the US for people who are deafblind leave a lot to be desired. Imagine having only an hour a week of a support service provider (SSP) who can help you with shopping and interacting with the world. The truth is there are plenty of deafblind people in the US who would be thrilled to have that much time with an SSP. Many states don’t provide any, and even if they did, there are not always enough trained people who can provide the service. If Eddy and Marc were using home signs, that would have made it more of a challenge to find SSPs who could work with them.

I also know families who are worried about what will happen to their adult son or daughter with a developmental disability when the aging parents who are supporting them are no longer able to care for them. I’m not making light of their concerns. Eddy and Marc’s reported concerns could be very real.

The thing is, there just had to be more to the story. I couldn’t imagine that two people who were creative enough to develop their own language between them couldn’t imagine other solutions for themselves. After doing quite a bit of searching I finally found out the brothers also had other serious physical issues they were dealing with (http://deafcapital.blog.com/2013/01/16/the-belgian-twins-euthanasia-and-the-myth/). One had spinal damage so severe that getting around was difficult for him, and the other had to sleep sitting up because of respiratory problems. One had just had surgery on his heart. There were limited medications they could take because of the glaucoma.

That’s the sticking point. They did not wish to die just because they were going blind. They were dealing with multiple health issues. The media reports I found took it for granted that it is reasonable for anyone who is deaf and blind to wish for death. The subtext is that such a life would not be worth living. If Belgian law stated that anyone who wished to die for whatever reason could seek out physician-assisted suicide, that would be one thing. But the media reports wrongly stated that the twins were able to convince a doctor to euthanize them because they were going blind and that being blind in addition to being deaf was intolerable to them. This is not what happened. The media either wanted this to be the story, or thought that was the story the public wanted.

The media is playing a dangerous game when they take such liberties. If you are posing the question of the acceptability of euthanasia in the case of an intolerable condition, the real question is, “Intolerable according to whom?” What if you have a condition that would make life intolerable in the eyes of others? How marginalized would you feel if, because of the tone of these stories, people were now looking at you as if your life were intolerable? At some point, will it justify others making euthanization decisions for you? Which is worse: euthanization or simply being locked away? What about sterilization? The days when this was true are not that long ago (and I’m sure are still true in many places. There are many stories of children with disabilities being kept locked up.). I am not against doctor-assisted suicide, as long as it provided after a well informed decision by the individual. The problem for people with hearing loss is that there is a history of bias in what information is given to them and their families. The media is perpetuating myths and stereotypes about life with disabilities. It can and does result in policy driven by misinformed public opinion that affects millions.

January 22 Update:

The National Association of the Deaf (NAD) and the American Association of the Deaf-Blind (AADB) have issued a press release to respond to the media bias in the reporting on Belgium’s Euthanasia of Deaf-Blind Twins: http://www.nad.org/http%3A/%252Fnad.org/news/2013/01/beglian-twins-deaf-blind.

Photo credit: http://www.telegraph.co.uk/news/worldnews/europe/belgium/9800378/Belgian-twins-had-first-request-to-die-refused.html

The Mighty Telecoil

I haven’t focused a lot on the specifics of hearing assistance technology in this blog, but I can’t think of a better item to talk about than the telecoil. Wait, really? Isn’t there something sexier to talk about?

No, not really. This simple, unsung hero of an option on a hearing aid or cochlear implant can make the difference between tuning in or tuning out. Hearing aids and cochlear implants may be very effective in quieter settings, but when noise is introduced, the hearing device alone may not be able to adequately create a satisfactory signal-to-noise ratio. For people who have a hearing loss, the sound that they want to hear (signal) needs to be significantly louder than the surrounding background sound (noise) in order for it to be understandable. Although hearing aids may have some technology to reduce background noise, it can also compromise the speech signal. This is why using an additional assistive listening device (ALD) is so important. Telecoils are a simple option to hear better on the phone and to connect with ALDs.

How Telecoils Work

To understand how telecoils work you need to know a tiny little bit about physics. A wire with a current running through it naturally gives off a magnetic field. If another wire is placed near it, the magnetic field in one induces a field in the other. Magnetic fields carry signals. Sometimes the information is disorganized (e.g., static), and sometimes it is organized (e.g., music or speech). Telephone and stereo speakers give off this magnetic field unless the equipment has been shielded to prevent it. In ALD terms, an induction loop is a loop of wire connected to a sound collection system (like a microphone and amplifier) that gives off a magnetic field carrying speech or music signals.

So what’s that got to do with hearing aids and cochlear implants? Well, the telecoil itself is a small metal rod wrapped in wired (oooh…see where this is going?). Telecoils were first put in hearing aids to assist in hearing on telephones when it was realized that they could take advantage of the leakage of this magnetic field that telephone speakers emit. The user simply flips a tiny switch on the hearing aid to turn it on. When the user places the phone speaker near the telecoil, the signal is picked up (i.e., the magnetic field from the phone induces a magnetic field in the hearing aid telecoil) and the hearing aid converts it to acoustic sound waves, amplifies the signal according to the individual’s hearing aid prescription, and sends the new amplified sound into the ear canal. Cochlear implants now have telecoils, and some telecoils automatically come on when a magnetic field is brought close to the ear.

The trick is to get the best signal reception from the telephone speaker to the hearing aid. The phone earpiece might need to be moved around the hearing aid to get the best reception. For example, early hearing aids were often body worn, not the compact components worn behind or in the ear. This means that the telephone speaker would be put over the aid (even if it was in a shirt pocket or hanging around one’s neck), not over the ear for this signal reception with the telecoil.

How Telecoils can be Used

If hearing better on the phone isn’t enough, telecoils are an exciting option because they can also be used with a variety of ALDs. If a room or area is looped with an induction system, the user does not need any additional equipment besides the hearing aid to enjoy improved listening. As long as someone is speaking into the microphone attached to the system, the signal will be sent out from the loop of wire through the magnetic field. Newer induction systems come in a variety of styles, such as free-standing small panels, chair pads, and floor mats that can be used in a variety of settings. See Beyond Hearing Aids  for some examples.

Even if the room isn’t looped and an FM or infrared system is being used, a telecoil can be useful. For people who need more amplification, removing their hearing aids to use headphones to listen through an FM or infrared transmission system is not a viable option. They need the specialized amplification provided by their hearing aid prescription. Covering the hearing aid ear molds with headphones can result in feedback. Listening through a neckloop and telecoil prevents this. A neckloop is a coated wire that is worn around the neck and plugged into the headphone jack on the FM or infrared receiver. Like its room loop big brother, a neckloop gives off a magnetic field that is picked up by the hearing aid telecoils. For people who can’t use headphones or who would prefer a more discrete set up than headphones, the neckloop is a desirable alternative.

Get in the Hearing Loop Campaign

A movement started in Holland-Zeeland, Michigan by David Myers to Loop America is spreading. The Hearing Loss Association of America and the American Academy of Audiologists worked together to help consumers and professionals Get in the Hearing Loop. I was honored to be invited to participate in this committee, and helped to develop the informational brochure on Assistive Listening Devices. Those interested in looping Oregon should contact Duane Smelser www.yourhearinghealth.com.

If you are working with someone who is getting ready to purchase hearing aids, or if you know someone with cochlear implants or hearing aids who has trouble hearing in noise, make sure he or she is aware of the inexpensive telecoil option. The consumer needs to advocate for this, as audiologists may not realize that the individual will be using ALDs. Especially in newer hearing aids and cochlear implants, the telecoil must be programmed. A great deal of confusion stems from consumers trying to use it without checking with the audiologist first to be sure that it has been activated and that it is adequately powered to provide a strong enough signal.

My Telecoil Haiku

Wire-wrapped metal rod

Carries magnificent sound!

Sexy enough now?

ALDs: The best kept secret…but why?

I can’t believe the difference this has made in my life. You can’t imagine what a relief it is to me to drive home after a day of classes and be headache-free. For the first time, I feel I can be successful in my coursework…or even a career.

These are the comments of “Mary,” a college student.

 Understand, my family often became frustrated in trying to communicate with me. I always thought that if the people who loved me most had problems talking to me, why would a teacher or employer take the effort with me. But this changes everything. If I had had this equipment when I first went to college, I might already have my degree now and the whole course of my life would have been different. I have to admit that even though I am thrilled with the difference this has made for me, once in a while I feel sparks of anger that no one told me about assistive listening devices before now. I’ve been wearing hearing aids since I was a child, and I’m just now finding out about them? Explain that one to me.

Mary’s discovery began when she went into the Disability Services Office at her college and requested a tape recorder. Being hard of hearing, understanding class lectures was a struggle even though she had hearing aids and used speech reading. Mary had never thought of herself as disabled, and had always managed on her own without help.

In my dreams I fill this room with people wildly interested in ALDs

Recently, though, she was beginning to recognize it took a lot of energy for her to keep up in class. After doing poorly on a test that she thought she was well prepared for, she decided she needed help. Even though it would mean taking more time from her family, she knew she would not succeed in her classes if she did not do something. Reviewing the lectures seemed to be her only option, thus the request for the tape recorder. She reasoned that if she couldn’t understand it, maybe her husband or daughter could repeat what was said for her so that she could understand it.

The disability services coordinator had served students experiencing difficulties similar to Mary’s in the past. She spent a few minutes talking with Mary about her problems in class to determine the kinds of accommodations that might be useful to her. She was delighted to find out that Mary done several positive things to advocate for herself, such as talking with her professors to let them know about her hearing loss, sitting near the front of the room to hear better and to improve the line of sight for speech reading, and that she was a long-time user of hearing aids. She also found out that Mary was not familiar with assistive listening devices (ALDs), but was willing to try. She related the following:

I brought out the FM transmitter and receiver. I pinned the mic to my lapel, and gave the receiver and headphones to Mary. With my back to her, I asked if she could hear me. When she didn’t respond immediately, I though maybe her hearing loss was too severe to benefit from the system. I turned to see Mary looking shocked and tearing up. She exclaimed that it had been years since she was able to hear someone without seeing their face to speechread. It was a very emotional moment for her.

After discussing her particular class settings and needs, they decided on a microphone system and listening option that would work for her. The Disability Services Coordinator gave Mary and her professors instruction on using the devices, and provided them with a tip sheet for trouble shooting.

Requesting Services

This is not just one student’s story. Many people could benefit from assistive listening devices, especially in group settings such as classes, religious or spiritual gatherings, work meetings, and even family gatherings. Hearing aids are not required to benefit from these devices. They can also benefit cochlear implant users, especially in settings with background noise.

If you are a student at a public institution of higher education and you have a hearing loss, you may be eligible for assistance. In college settings, that assistance may include assistive listening devices, notetakers, interpreters (oral or sign language), and/or a speech-to-text service, depending on your hearing needs, the listening requirements in the class (e.g., group discussion or lecture), and the amount of specialized terminology in the course.

Identify yourself to the disability services coordinator on your campus. If you have trouble identifying this office, contact the ADA (Americans with Disabilities Act) coordinator and ask what office provides accommodations for students with disabilities. You will be required to show documentation of your hearing loss and describe how your hearing loss impacts your ability to access communication. In advocating for yourself, you should be able to describe to the service provider what situations you hear well in, what situations present the most problems, coping skills you have developed for various listening situations, and your preferences for accommodations. The more you can describe what helps you and why, the more likely you will be to receive that accommodation or one that achieves equivalent results.

Many, many hard-of-hearing students go through school on their own without requesting accommodations. They enter college using the same coping tools they used in high school, and find out the hard way that it is very different. The school service provider may have never served a hard-of-hearing individual before, especially since many never ask for services. If this is the case, or if your service provider is not familiar with ALDs and is struggling with how to provide accommodations for you, suggest they contact an office of the nationwide network that provides technical assistance to programs serving hard of hearing and deaf individuals: pepnet 2 (http://www.pepnet.org or 503-838-8642).

About This Post

This is a revised version of an article I wrote over a decade ago for the WROCC Express, the newsletter of the PEPNet Regional Center serving the Western US. (Over the years, WROCC became PEPNet West, and today there is just one center serving the entire US (pepnet 2) rather four regional centers.) It is based on a true story I heard from our Disability Services Coordinator, and it is just as true today as it was then. Many people who are hard of hearing have never heard of assistive listening devices and are unaware of the benefits of them, even though they have been seeing hearing health professionals for years. The question that still begs to be asked is “Why?” or maybe “How?”. Most hard-of-hearing adults I know learned about ALDs through consumer groups like the Hearing Loss Association of America. If there are some 36 million people in the US with hearing loss (approximately 17% of the population), and 10,000 people are members of HLAA (this number was from 2004), there are a whole lot of people out there who haven’t gotten the word yet, and whose quality of life could be greatly improved with this technology.

Photo credit: http://www.sxc.hu/browse.phtml?f=view&id=630271 by Fredik

The One about the Zombie Apocalypse and Family Gatherings

I love getting together with family over the holidays. I enjoy reconnecting with everyone and always learn new things…recipes, tips about using an iPad, or websites like Pinterest. This year it happened to be why kindergartners need to be reassured that there are no zombies hiding in the ditches next to the school. Apparently, older teens like to watch a series called “The Walking Dead,” and then they scare their little brothers and sisters with stories of zombies. Then those children bring the stories to kindergarten and scare other kids, so much so that one teacher wrote a note to parents in the school newsletter that started off with something like “If you are wondering why your son or daughter came home with a story about how I helped them check the ditches for zombies, here’s what happened…” Kids are even playing Zombie Tag on the playground.

My sister-in-law (who was telling the story and is a reasonable and normal person) is a fan of the show, so we went out and bought the first two seasons. I never thought a series about zombies would keep my interest (a movie, maybe, but a whole series??) but it turns out this is a really good show. The salesperson at the checkout counter said “It makes you think, “What would I do if there were a zombie apocalypse?”” Although in my mind I snickered smugly and unkindly at her statement, I’ll be darned if that’s not exactly what I wondered after chewing through one and a half seasons over the long holiday weekend. (Warning: The series is graphic. After all, to kill a zombie you do have to shoot for the brain! And zombies eat only live people. ‘Nuff said. )

Roaming zombie herd, not my family gathering!

While this one interaction at Thanksgiving has led to hours of entertainment for myself and my partner, family gatherings (or any large get-together) are something that lots of hard of hearing people dread. It’s a challenge to communicate under normal circumstances, but with background noise, music, television, and lots of conversations going at the same time, what is a happy gathering for others is often very stressful for people with hearing loss. Isolation, withdrawal, and depression are big problems for people experiencing hearing loss. Unfortunately, the very gatherings that are meant to help build connections can increase these negative feelings when communication goes awry.

Imagine, you are surrounded by family and friends, can’t understand 3/4 of what is being said, are laughing (or not laughing) at jokes you didn’t hear, and are praying that no one will single you out for conversation requiring a specific response. First, how do you feel? Stressed? Tired? Depressed? How do you cope? Do you try to be polite and fit in? Maybe you try talking a lot so that you don’t have to respond to anyone. Or maybe you sit in front of the TV to avoid any conversation at all. Without letting others know the reasons for these behaviors, they are left to their own devices to interpret what they see. Hearing loss is probably not the reason they’ll come up with for your behavior.

It’s not surprising that family members don’t really know how to respond when very often the hard of hearing people themselves don’t know what to ask for. Sam Trychin is the guru of communication for people who are hard of hearing. He has a series called Living with Hearing Loss http://www.trychin.com/hearing_loss_series.html that includes the book Communication Rules. There is a free preview available on the website, too. It’s not just a few tips, it is a workbook that helps people learn how to advocate for their communication needs (something that we might all find useful!). Effective communication is a two-way street, and requires changes in the behavior of the speaker and the listener.

As you plan or head out for your next holiday celebration, here are a few tips.

If you are hard of hearing:

1. If you can, find a quiet place away from the noise to talk. You might even ask the hostess if there is a spot he or she might recommend. If you host the party, there are even more variables under your control!
2. Keep a small pad and piece of paper with you to at least get the context or topic, if not the whole sentence.
3. Avoid asking “what?” Instead, repeat what you think you heard and ask about the specific part you didn’t hear. The misunderstandings can be quite humorous. A little laughter often helps put people at ease.
4. Let people know that what they are saying is important to you, and that you want to understand them.
5. Check on-line for tips for dealing with holiday gatherings. It is a common topic on listservs among people who share the experience of hearing loss.
6. Try out a personal sound amplifier like a PockeTalker or a Sound Wizard. People speak into a small microphone and the sound goes to headphones, earbuds, or straight to your hearing aid if you have telecoils.

If you are talking to someone who is hard of hearing:

1. Don’t talk with your mouth full or put objects in front of your mouth when you are speaking.
2. If someone doesn’t understand you, try rephrasing, but please don’t say “nevermind.”
3. Slow down, speak clearly, but don’t over-enunciate or shout.
4. Suggest moving to a quieter spot. If it is possible, get closer to the listener. A few feet can make a big difference in background noise.
5. Be patient. Please don’t be annoyed if you are asked to repeat or write down a phrase.
6. Make sure you have the hard of hearing person’s attention before you start talking. If they aren’t looking at your face, they’ll be less likely to be able to understand what you are saying..
7. If you have suddenly changed topics, it is sometimes helpful to indicate this.
8. If you are planning a party, try setting up a space that is purposefully quieter. Many guests will enjoy a space to get out of the hustle and bustle of a noisy party.

Why avoid family gatherings? After all, you might miss out on finding out about the next zombie apocalypse! If you have tips you’d like to share, please leave a comment below!

Photo Credit: http://screenrant.com/the-walking-dead-season-3-amc-sandy-137627/

Synthetic Sound: sussing out mire and myth from magic

Back in the early 80’s when I was first learning about cochlear implants (CIs), I was dead set against them. I heard they made voices sound like Donald Duck, and I thought it would be cruel to force children to hear like this. I thought embracing American Sign Language and being a part of the Deaf Community made more sense. Fast forward a few decades (yes, I said decades). I finally meet and become friends with people who identify as hard of hearing, people who use cochlear implants, and people who rely on amplification, technology, and speech reading to communicate in their day-to-day lives. These are people who might respond, “Why would I learn sign language? I don’t know anyone who is deaf!”

Not surprisingly, I found out many of the assumptions I had made over the years were wrong.  Now I strive to make sure service providers and students in our programs understand and respect the communication choices of anyone with hearing loss, recognize the benefits and limitations of those decisions, and understand the accommodation needs people will still have in different environments.

There is a new video that goes a long way to help people understand both the benefits and the limitations of cochlear implants (thank you Cassie Franklin of pepnet 2 for sharing this!).   Hearing…but not as you know it. Helen Willis lost her hearing to meningitis when she was 2 years old. When she was three, she had cochlear implant surgery. (This was about 18 years ago, so the pictures show her with a partially shaved head and a very large scar. Current procedures require a much smaller incision.) Helen provides an honest view of what her life with a cochlear implant is like, how much of a benefit it is to her in so many situations, how she continues to use sign language in some situations, and how she is still left out in other situations. She talks about still needing accommodations in her college classes, something many fear will be taken away from them because they are not seen as “disabled enough” with the cochlear implant.

The video includes a really nice animation and explanation of how a cochlear implant and the hearing mechanism works. More than this, the video includes simulations of what speech, speech in noise, and music sound like through a cochlear implant. This was the one part of the video I was concerned about. The sound is so limited, it is a challenge to understand how hearing this would be beneficial. I didn’t want people to get the wrong idea and misjudge the benefit of cochlear implants. I checked with audiologists at the Oregon Health and Science University Cochlear Implant Program to find out about the accuracy of this part of the video. I was told that it is actually accurate, but that the difficult part to communicate is that people perceive sound differently, and thus will have different reactions or results from cochlear implants.

This is an important concept, and I found I was falling into the same trap I warn others about. Perception refers to how a person assigns meaning to a certain sound or combination of sounds. Cochlear implants generally accomplish what they are designed to do: they stimulate a nerve that relays auditory information to the brain. When a person gets a cochlear implant, he or she must go through a learning process, pairing sounds with meaning and source, until the brain learns to connect the new pairing. Implantees might start by listening to children’s books while following along with the text, and then move to more complicated and faster paced speech. This is the reality of what we mean when we say CIs do not magically restore normal hearing. It’s an excellent video (under 10 minutes) and is open captioned. I highly recommend it.

Other Experiences with Cochlear Implants

If you are curious about what the real-life journey to hearing with a cochlear implant in real-time might be like, Wendy Harbour, a recent implantee, has just started her blog Wendy’s World: Adventures of a Deaf Disabilities Studies Professor.  As she is learning to use and getting accustomed to the new sensations, she describes sounds she enjoys, sounds she doesn’t enjoy, and the ups and downs of dealing with her own expectations and those of others. It is really a delight to read.

One of my favorite books about CIs is an older one now, called Wired for Sound by Beverly Biderman.  She does a magnificent job describing being a child, adolescent, and then adult with a progressive hearing loss and its impact on her life. She provides in some chapters reviews of the research about the success rates and outcomes for people getting CIs (information she was using to decide whether or not she wanted to go this route). I enjoyed, in particular, the  chapters where she describes how the dynamics of her relationship with her husband and children changed as she became more independent with her hearing.

Another interesting documentary is the HBO special Hear and Now. This is the story of a very dear couple in their 60s who both get CIs. I would not have expected that they would be candidates for CIs, since they had both been deaf since childhood. The documentary doesn’t address how they became candidates. The woman is just curious about sound, and noticing how other people and animals respond to something she does not hear. Her husband seems to get the implant mainly to go through the experience with her.  Not surprisingly, they don’t respond positively to hearing sound, don’t embrace the technology, and rarely tend to use their CIs. From the wife’s perspective, it is not at all what she expected.  The filmmaker is their daughter, and the father was one of the inventors of the TTY.

The Medical Model/Cultural Model Miasma

It is  common for  both deaf and hearing individuals to expect that when a person receives a cochlear implant they become “hearing” or have normal hearing restored. The assumption on both sides is that the individual will no longer have a hearing disability and won’t need to sign. From the Deaf perspective, though, this isn’t a positive statement about removing a disability and the need for accommodations, but rather a negative one about losing or rejecting one’s Deaf identity (let alone how the magical thinking ignores the reality of life with a cochlear implant).  Sound and Fury is one famous documentary following the families of two deaf brothers as one decides to have his child implanted and the other decides against it. It shows at a very raw level how the Deaf community and their families viewed cochlear implants at the time. The brother whose family chooses against it does a good job researching what is required for the implant to be a success and evaluating their family’s ability to provide that environment. Interestingly, there is a followup to this (Sound and Fury: seven years later) which shows how people worked through their fears and how attitudes can change.

I’ve seen many an innocent hearing person bring up the idea of cochlear implants to people who identify as culturally Deaf, expecting that they will be interested in getting a CI. They leave these interactions feeling confused, as if they have said something wrong, but they can’t imagine what that was. They don’t grasp that the cultural equivalent might be to walk up to a Black person and ask “If you could be white, would you?”  One video tries to get the audience to experience this:  My Son is DEAF, Finally!   This video is a challenge to watch if you are hearing and don’t understand the Deaf identity perspective, but it is supposed to be. If you can stick with it, you might start to see what it would be like to be a hearing minority in a society that values something you inherently are not (Deaf), and is willing to surgically alter you to make you more like them. The feelings that it brings up for you should be examined so that you can better understand their perspective. (Spoiler alert: no one (including the dog) is actually deafened in this video.)

Is it Possible to Identify as Culturally Deaf and have a CI?

I was on a Cochlear Implant panel several years ago at a Vocational Rehabilitation conference. One of the panelists was a man who identified as culturally Deaf and who had a cochlear implant. He said that his family, who were also all Deaf, had a difficult time accepting that he wanted a CI. To them it meant that he no longer wanted to be Deaf. His response was clear: “You wear a hearing aid, right? That doesn’t make you hearing, does it? A hearing aid doesn’t do anything for me. The only way I can get that same benefit you get from a hearing aid is to get a cochlear implant. I wouldn’t mind being aware of environmental noises around me. My goal is not to stop signing or to start talking, it is simply to get more auditory information to help me in my day-to-day life.” It took some time for the family to work this out. Everyone had to examine their values and why they felt threatened by his decision.

Cochlear implants do what they are designed to do…they bypass dead hair cells to get sound signals to the brain that the brain must then apply meaning to. Cochlear Implants don’t change your identity. I would posit that if you identify as Deaf, you will likely continue to cherish all of the things about Deaf culture that you have always cherished. You might, however, find yourself interacting with the world somewhat differently, which might result in changing the dynamics among family and friends. They might label this as denying your Deaf identity, when in reality you are just growing and changing as a person. They need reassurance that your new behaviors don’t mean that you value them any less.

What do you think? If you have experiences you would like to share, I’d love to hear them!

ASL Interpreter takes New York By Storm

I was supposed to be in DC this week for a Project Directors meeting, but at the last minute decided to pay attention to this thing they were calling Frankenstorm and stayed home. Watching the news yesterday and today, I am so glad I decided not to go. My heart goes out to all the people dealing with it now.

Since I have family in Virginia and friends on the east coast, last night I was watching all the storm information and caught Mayor Bloomberg’s press conference. I noticed his ASL interpreter, Lydia Callis, was doing a great job. Then this morning I’m watching the news and it seems she has developed quite a following! Here is a snippet of her work I found on YouTube:

http://www.youtube.com/watch?v=c_ktVn_86tw 

And here are a couple of other links about the impression she has created:

http://nymag.com/daily/intel/2012/10/bloomberg-sign-language-interpreter-lydia-calas.html

http://signlanguagelady.tumblr.com/

The poster of this YouTube video labeled it “Michael Bloomberg Warns and Interpreter Entertains.”  She’s actually doing a great job, not just being entertaining. If you want to see an entertaining interpreter, here is the Spin City version of the Mayor of New York being interpreted:

Unfortunately, neither of these videos is captioned, although I did see that the emergency information was captioned on television. Can you imagine going through this storm without being able to get this emergency information? It has been only recently that it is required that emergency information on television be captioned.

Unfortunately, captioning for on-line video is still optional.  Try turning on YouTube’s automatic captioning feature (click on the CC) and see if you can understand anything that is being communicated in these videos. It simply isn’t adequate.  The Greater Los Angeles Agency on Deafness (GLAD) is suing CNN over their lack of captioning of news videos on the internet. CNN is claiming it is a violation of their first amendment rights to have to caption material before posting it. If CNN wins this argument, it will be devastating to the recent successes in captioning access.

Favorite Resources #1: YouTube Fun

This week’s post is to share some of my favorite video resources with you all and invite you to share your favorites with me. This group of videos make me laugh, give food for thought, and provide good material for discussion.

http://youtu.be/c593mFEoB4k Call Me Maybe ASL/VRS Version: There are a bunch of Call Me Maybe videos out there, and many are in American Sign Language. This video is one of my favorites because it incorporates making the call through a video relay interpreter. They really did a great job with this one! To turn on the captioning, click to play and then hover the mouse over the lower part of the video and click “cc”. There are several different caption tracks for it.

http://youtu.be/K3ai5IVfFdE Coming out Deaf: The sad thing is you only have to “come out” about things that society shames. This awared-winning video manages to put a humorous spin on it. It puts a new twist on denial and hidden disability. The son comes to his mother to tell her something he has been hiding from her, only it’s not what you expect. The flashbacks are perfect, and the twist at the end makes it even better.

http://youtu.be/us7nAFSfo1U Deaf Mugger: The reality is that interpreters often find themselves working in situations they wouldn’t normally place themselves, in this case, working with a deaf mugger. The interpreter explains to the victim how she came to be there.

http://youtu.be/VArCXBqArQY Read My Lips: This video from the New Zealand National Federation for the Deaf is about speech reading and very cleverly captions the video on the mouth that is speaking. They’ve also muddied the sound a bit to give the experience of a high frequency hearing loss.

http://youtu.be/1cqv84ywBSE A Few Minutes in the Life of a Sign language Interpreter, the Classroom: Every profession has its stresses that are commonly known among people in that profession. One way to work off the frustrations of the day is to make fun of the things causing the stress. This video is one that most interpreters can relate to. It has about every misconception they’ve heard except the offer of Braille to the Deaf student. I share this one with a little caution, because I don’t want to make fun of people who make these mistakes simply because they don’t know any better…and at the same time, I’m wondering where is the equivalent video for hard of hearing folks? I’m sure they have a few pet peeves they’d like to share!

That’s it for Favorite Resources #1. As the name implies, I’ll share more as I get them. So, what are your favorite videos? Leave a message below with a link to your favorite videos (doesn’t have to be YouTube!) and why you liked them. I’d love to add some more to my list!

Audism Redefined: The Dictionary and the Mad Man*

That’s “mad” as in angry…

I remember hearing a story on the radio several years ago about atheism. The reporter defined atheists as people who don’t believe in God. An atheist caller took umbrage with this and responded that the definition the reporter provided presupposed there was a god not to believe in. Atheists take the position that there are no deities, period, not that they don’t believe in the gods that everyone else knows exist. It was a fascinating point to me. Unchecked, we interpret the world and those in it through our own perspective. It is a privilege that those in the majority rarely explore unless some cognitive dissonance requires it.

More recently, a colleague and friend, CM Hall, shared with me her ire over a radio broadcast she had heard. A story on Oregon Public Broadcasting was covering a speech recognition technology for captioning Youtube videos that was developed by a Deaf employee. The reporter referred to the individual as “hearing impaired” several times. CM sent this feedback: “We don’t say straight-impaired for members of the lesbian, gay, or bisexual community. We don’t say white-impaired for people of color. I just think it’s way beyond time that we as hearing folks who, I believe, are attempting to be culturally sensitive, begin using the language that Deaf and hard of hearing people prefer.”

Which brings us to the Dictionary and the Mad Man. The dictionary was the American Heritage Dictionary (AHD). The mad man was John Lee Clark. He didn’t start off mad; on the contrary, he was excited to hear that audism had finally been added to a dictionary on that sunny day in July, 2012. So imagine his surprise when he looked it up and found audism defined as follows:

With synonyms like these, who needs enemies?

“Discrimination or prejudice against people based on the fact that their ability to hear is impaired or absent.”

Please take a moment to consider this definition. Does it seem reasonable to you? At first blush, maybe (especially if you don’t experience hearing loss yourself). But compare this definition with the new one that replaced it:

1. The belief that people with hearing are superior to those who are deaf or hard of hearing.

2. Discrimination or prejudice against people who are deaf or hard of hearing.

The first definition draws a conclusion and practically leads the reader to discriminate (i.e., if someone is impaired aren’t they “less than” in some way from those who aren’t?). The second definition leads the reader to questions: Do some people think they are better than others based on their hearing status? What does that behavior look like? Have I ever acted like this? What does being treated equally look like? The new definition leads to a completely different mindset.

How did this dramatic change come about? John Lee Clark wasn’t just any mad man. He is a deafblind poet, blogger, and advocate, and quite eloquently dissected (and I do mean dissected!) the definition and the assumptions behind those words in an open letter to AHD, which he also posted to his blog http://www.johnleeclark.com/?p=52. Clark got an almost immediate response to his complaint from the Executive Editor of AHD. Because he spoke up, the definition was changed. Kudos to AHD for their receptiveness!

What does discrimination look like? It may be obvious like refusing to provide interpreters or a speech-to-text transcription service. It may be more hidden in employment practices. Sometimes it comes out in attitudes, expressed as “Why do they need internet captioning? They should be happy that most television programs are captioned now.” (Tip…if you hear yourself saying “they,” pause and reflect!) People who are hard of hearing or Deaf face regular microaggressions (“What did you say?” “Nevermind. It’s not that important.”) that build up over time.

Interestingly, I don’t see the word audism used by people who identify as hard of hearing. Discrimination is a word they relate to, but not audism. I’d be interested in hearing your thoughts on this!

*Title Redefined…

I thought I was being clever with this title and giving a nod to one of my favorite books which is about the development of the Oxford English Dictionary. I remembered the title as “The Dictionary and the Madman.” Perfect, right…mad man/madman…get it? When I was doing my final research for this post, I found out the correct title is The Professor and the Madman: A Tale of Murder, Insanity, and the Making of The Oxford English Dictionary. Argh! Thwarted again! Still, it’s an excellent book even if the author made my loose association even looser. This is the description from Amazon.com: The compilation of the “OED,” begun in 1857, was one of the most ambitious projects ever undertaken. As definitions were collected, the overseeing committee, led by Professor James Murray, discovered that one man, Dr. W C. Minor, had submitted more than ten thousand. When the committee insisted on honoring him, a shocking truth came to light: Dr. Minor, an American Civil War veteran, was also an inmate at an asylum for the criminally insane. See how I snuck a book recommendation into this blog? Now if I can figure out a way to work The Immortal Life of Henrietta Lacks in, I’ll have really done something!

The Lap Dance over Fluoride and Other Dubious Tales

Tango-not Lap Dance

I walk in on a discussion and ask, “What’s up?” The reply I get is, “Oh, we were just talking about this article in the paper The Lap Dance over Fluoride.”  Whaaa? First I try picturing it and immediately decide that’s not a good idea. I know there’s a big controversy in Oregon because we don’t fluoridate our water, but no matter how I try to rework it in my mind, I can’t figure out what point the author is trying to make. Is there some corruption around the decision by policy makers? I notice my friends are looking at me strangely, so I know my face must be reflecting my mental gyrations (ha!). Finally, I look over at the table and see the headline: “The Tap Dance over Fluoride”. Ooooh. Well. That’s different. And it actually makes sense.

Forcefeed/ Four-speed

A few days later, I was in the car with my partner and we were having our usual discussion about whether or not the car in front of us was going to be a slowpoke through town or not. Susan said, “I bet he’ll be speedy unless he’s a forcefeed.” A forcefeed? Is that a new type of fuel injection engine (that sounds like it could be forceful). It turns out the darned thing was a four speed, and we did have to cool our jets behind it.

And so it goes. When we don’t quite hear the message, we sometimes massage the story into something that could make sense, and other times we just end up completely lost. Small misinterpretations of the message can lead to misunderstandings, awkward pauses, and very often misattribution by the speaker for why the communication is not quite going as expected. This can happen even with seemingly minimal amounts of hearing loss or even a loss in just one ear.

It turns out these are the early signs of high frequency hearing loss, the most common form of hearing loss. People experiencing this may think others are mumbling or not speaking clearly. The reality is that those high frequency sounds carry meaning, and without them, sound becomes mushy and unclear. It is tempting to ignore these symptoms, but it can cause real problems in the classroom and on the job.

Demystifying Hearing Assistance Technology

You might be thinking you have experienced some of these things, but aren’t ready for hearing aids yet. There are often things you can do, and there are technologies you can use with or without hearing aids (or cochlear implants), to improve your hearing situation. If you are looking for more information about assistive listening devices (ALDs) or hearing assistance technology (HAT), try searching for either of these phrases in your favorite search engine. I also have a book posted on my website that covers many of the options: http://www.wou.edu/~davisc/Demystifying.pdf. The Hearing Loss Association of America http://www.hearingloss.org has a lot of great information posted there. The membership is very inexpensive, and the monthly magazine has GREAT articles in it. Local meetings are a great way to find out what others are doing to cope. There are also on-line support groups like the Say What Club www.saywhatclub.com. The PEPNet 2 website http://www.pepnet.org (Postsecondary Programs Network) also has a great deal of info posted there that is useful to students, employees, employers and service providers. Finally, a shout-out to Becky Morris’ wonderfully informative website http://www.beyondhearingaids.com.

Pay attention to the circumstances around when you have trouble hearing. Is it at home, work, out in public, or all of the above? What is the common denominator? Can you understand conversations fine without the TV on, but once the volume is up you lose clarity? Do people tell you you missed their phone call or doorbell when you have the TV on or when you aren’t near the sound source? Do you have more trouble hearing people with higher pitched voices than lower pitched voices? Do you hear “fine” in your office, but when you go to lunch at the noisy diner, you notice you have more problems? Do you have trouble hearing in the car? Background noise and distance from the sound source are to real problems for people experiencing hearing loss.

The last time I had my hearing tested a few years ago I did not have any measurable hearing loss in the speech frequencies (mine dropped off at 8 kHz; generally our hearing range is from 20 Hz to 18 kHz). I do, however have a constant high-pitched tone ringing through my head. This is called tinnitus and if you want to know what it sounds like for me (different people experience different sounds), listen to this: http://www.hear-it.org/external_files/Hylendetinitus.mp3 (although I don’t listen to this kind of music that often!). I am noticing more and more that if I am in a noisy setting or if I am in a poor acoustic environment with noise, I have trouble understanding the message (and clearly I’m not very skilled with filling in the blanks!). And by the way, if you can’t hear the high-pitch tone being played in the example above, you may have a high frequency hearing loss, yourself.

Mild is a misnomer. Even “having a little trouble hearing” can have a devastating impact in poor acoustical environments for people who are accustomed to hearing and getting information auditorily. While the impact starts off subtly, people react by slowly withdrawing from situations that challenge their ability to communicate (often without realizing it). If you think you might be experiencing hearing loss…don’t lap dance around the issue!

photo credit: Tango Couple Silhouette http://www.freepik.com/free-photo/tango-couple-silhouette_18203.htm

Other photos: Sound waveform using Camtasia of Cheryl saying forcefeed and four-speed; Cover of Demystifying Hearing Assistance Technology book.

Handhelds handy? Hardly!*

What is the attraction that public venues have to handheld captioning devices? I am part of a group that is advocating for captioning in public venues such as movie theaters, live theater, and sports events. We have had many positive responses from these venues. Some may be reluctant initially, but are won over when they see the positive responses from the public. For some reason, most venues have heard of handheld devices and gravitate towards them, even when they are told that they are one of the least-preferred options by consumers.

So what’s the big deal? Why don’t people like using handheld devices to receive captioning? To answer this question, I challenge you to try it out yourself, and you can do it in the comfort of your own home.

If you have a smart phone, look for free captioning apps. There is one for the iPhone called “Subtitles.” It gives you access to subtitles for many, many TV programs and movies. I was watching a DVD of Sons of Anarchy. There is an Irish character in the program, and for the life of me I can never understand a word he says. I searched for the episode on my iPhone in Subtitles, picked my language, started the subtitles, and started the episode. (Once you start the subtitles, it advances automatically at the pace of the program. You don’t have to do anything else unless you pause the program. It doesn’t identify who the speakers are unless there is the “slash-ear” icon next to it.) Now, the iPhone is light weight and unobtrusive. The episode is only an hour long. I held up the phone to read the captions when the character was on. On one level, it worked beautifully, and I finally understood this character.

But let’s examine this a little deeper. The reality is I was laying in bed and watching the show. As small and light as the iPhone is, I was propping my arm up in many different locations to stay comfortable, and scootching down in the bed so that I could more easily look back and forth between the captions and the TV. I didn’t need the captions to understand all the characters, so I had the luxury of looking away from the phone for several minutes at a time. Normally I don’t use glasses to watch TV, but now I needed my reading glasses to read the captions. This meant I was looking over my glasses to see the TV and having to refocus to watch the fast moving captions on the screen.

Cheryl demonstrating iPhone Subtitles App

If I had been in public, this would have been more of an issue. Have you ever sat in the middle seat on a flight, with strangers on either side, and gone through that silent negotiation for who will use which half of the armrest? Imagine needing to explain the captioning device to the person. Now imagine having the conversation when you really don’t hear very well and the lights are down. What if you had something else in your hands, like popcorn, a drink, a program guide, or a tissue? What if you wanted to hold hands with a loved one? What if you couldn’t get comfortable reading the captions and seeing the stage/screen unless you held the device slightly outside of your seating area in the next theater-goer’s space? What if that person is bothered by the light from it no matter where you hold it?

Then I thought of the people I know in the Hearing Loss Association of Oregon who would be likely to use the devices. Many are older, have had a stroke, or have other physical difficulties. How would they manage to hold this in a way they could read it for a 2 hour program? Not a very attractive option.

The stories from people who have used them in real venues include having to get up in the middle of a show to get a different device when the one they have malfunctions; having to replace batteries; and being inconvenienced by needing to hold on to it, stand in line to get it, and stand in another line to return it. One person got her ticket refunded and was able to come to a different show when her device malfunctioned. The next time she checked out two devices. Sure enough, one of them malfunctioned again, but this time she had a backup.

Another issue my friends call “the ick factor.” Who disinfects these devices between uses? As you are juggling things in your lap, do you put it on the floor? How many people have sneezed and coughed with it? What about going to the bathroom? What do you do with it while you are there? Do you wash your hands? Come on, inquiring minds want to know!

For some reason, it takes a lot of convincing to get venues to understand why the handheld devices are not well received. It’s not just hard of hearing people being picky or difficult. If they install a system that interferes with people’s ability to enjoy the show, it will be a waste of money because the public won’t use it. And it is a public smart venues should be courting. Beginning 1/1/11, 10,000 Baby Boomers reach the age of 65 daily until 2030, and well over a third of the population over 65 experiences hearing loss.

Which brings me to my final point: with handheld devices, you can only reach an audience equal to the number of functioning devices you have on hand. Every new customer means more devices, maintenance, and storage. At the same time, many people who are becoming hard of hearing tend to avoid these activities because they expect they will not be able to  follow the dialogue. They stop attending because they aren’t aware of access devices they could request. In venues where it is possible, reader boards really make the most sense for the customer and the business.

Slowly but surely, people who are hard of hearing or deaf are not limited to the Tuesday 2:00 show of the movie that least interests them at the one participating theater within 50 miles of their home. The most successful venues have relied on input from individuals with hearing loss as they make decisions about where to place reader boards, what types of devices to use to deliver the text to the user, and how to incorporate assistive listening devices with the text delivery. As advocates, we are learning about what challenges they face, and they are learning about the challenges and needs of the hard-of-hearing public.

If you want to read more about captioning, legal issues, and success stories, check out Hearing Loss Law at http://www.hearinglosslaw.com/articles/washcap-1/ and www.or-cap.org.

*My thanks to Clark Anderson for the title!