Emergency Preparedness for the Deaf and Hard of Hearing: Tips for Coping with Natural and Man-Made Disasters

Emergencies happen. This month alone, the country has seen floods, tornados, wildfires, terrorist attacks, not to mention power outages, water-main breaks, and a host of other catastrophes. It was also the 15th anniversary of 9/11, which ushered in a new era of emergency awareness.images

The definition of “emergency” is “an unexpected and usually dangerous situation that calls for immediate action.” That means you need to be prepared.

For people with hearing loss, the preparations go beyond the usual.

Everyone should have an emergency plan. New York City Emergency Management suggests essential elements of an emergency plan on its website.

NYCEM also has a site for emergency planning for people with disabilities.

And everyone should have an emergency kit. The Red Cross suggests what you need in your emergency kit.

Last week the New York City Chapter of the Hearing Loss Association of America hosted a presentation on emergency planning for the deaf and hard of hearing. Two representatives of NYCEM offered information about basic emergency planning. Jeffry Adelman, who has Meniere’s disease with severe hearing loss, is a volunteer with NYCEM and he offered some specific thoughts for adults with hearing loss.

He began by stressing the usefulness of what he called “legacy technologies.” These include good old pen and paper for communicating with friends, family and emergency workers if you do not have access to your hearing aid or cochlear implant. Beethoven, who was profoundly deaf in his later years, left 150 notebooks full of his communications with people he couldn’t hear.

Another legacy technology is a landline telephone. Even when cell phones, internet, power and everything else goes, a landline, which relies on underground cables, may still work.

For those with hearing loss, emergency kits, like those specified above, also need to include extra batteries and chargers to keep your hearing aids, cochlear implants and assistive listening systems safe and working. Hearing aid batteries are usually disposable, so make sure you have several packets of back up batteries.

Make sure you have a sealed waterproof container in your emergency kit, for your hearing aid or cochlear implant. The bag or container should be big enough for extra batteries, chargers, and assistive listening devices. Don’t forget to include your medications, written copies of your medical information, your prescriptions, and your driver’s license and passport.

Cochlear implants are more of a challenge. They work on rechargeable batteries, which generally last at most about eight hours. This is where a portable battery charger – or two, if you want to be extra careful – may be useful.  The chargers themselves need to be charged, however, so be sparing in how you use them.

Don’t forget your car as a power source. Even when all other power is out, your car (depending on model, and as long as you have gas) will have some power for charging things like a cochlear implant battery pack, your cell phone, and so on. These will be charged through the USB port, not a conventional wall plug.

Flashlights, a must in anyone’s emergency kit, are especially important for the hard of hearing. If it’s dark, you may need a flashlight to help in reading lips.

If cellular phone service is still working, you might want to use your smart phone to access Facebook’s Safety Check feature. Safety Check allows Facebook to notify you in the event of a disaster in your area and ask if you’re safe. You click the “I’m safe” button and the message will go to your Facebook network. Facebook can also give you a list of friends who might be affected by the disaster. Facebook is selective in the disasters it covers with Safety Check, and has been criticized for implementing it in some disasters and not others, but it’s still a good way for the deaf and hard of hearing to check on friends and relatives.

If you live in an area where tornados, hurricanes, floods, landslides or other natural disasters are not infrequent, you may want a NOAA (National Oceanic and Atmospheric Administration) weather-alert radio. These come in all price ranges and a variety can be found by Googling “weather alert radio.” If you are deaf or hard of hearing, you can activate a warning light. Some weather alert radios have an LCD screen for alerts.

You can also sign on to alerts issued by your community. In New York, the city’s official emergency notification system: NotifyNYC, can be modified for the kinds of alerts you want to receive.

Finally, and this applies to anyone who lives alone, whether or not you have impaired hearing: Form a support network – ask two or three friends, neighbors, coworkers to be in your network. You don’t want to go through an emergency alone.

Your network partners should make a plan to stay in contact during an emergency. You might exchange house keys. Your network partners should know your medical conditions and needs, and where to find emergency and medical supplies.

As the Boy Scouts taught us, Be Prepared.
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Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

Step Up, Speak Up, and Walk4Hearing

Sunday after next (September 25) is New York City’s Walk4Hearing. This is a fundraising* event but, more important, it’s also a way to stand up for people with hearing loss. We expect hundreds of participants of all ages, who represent the millions of Americans of all ages with hearing loss. Other Walks will take place during the year across the country.

new-york-cityThis year’s Walk, in the words of HLAA Executive Director Barbara Kelley, is a Call to Action for Communication Access. “Ask for something you need to help you with your hearing loss. If you tweet, post it on Twitter@Walk4Hearing using #CommAccess.”

Here are some suggestions:

  • At the movies, ask for the captioning devices now mandated at all chain theaters. Ask the manager to help you set it up and to make sure it’s captioning the right movie. Take a picture of yourself with the device and tweet it!
  • At the theater or at a lecture, ask the manager or the concierge desk what kind of assistive listening devices they have. And then use them. Some also have captioning devices. And check out TDF-TAP’s special open-captioned performances.
  • At meetings, classes, or on the phone, speak up if you’re struggling. There are some easy fixes, especially if you wear hearing aids with telecoils. All you have to do is ask for them. In my experience, you may be surprised by the quick and positive response you’ll get.
  • At a store, ask store clerks or cashiers to speak clearly, or to write down the price or other information. If it’s a store you use frequently, especially a chain, ask them to install the kind of cash registers that show you what you owe. You can also ask them to install a portable loop system at the information desk, the register and/or the pharmacy counter.
  • At a place of worship, ask about installing an assistive listening system. Go armed with this information from the Hearing Loss Association of America.
  • At an exercise class, ask the teacher to wear the transmitter for a personal FM system.  Your audiologist can suggest the best system for you.

If you’re still wondering why you should speak up, I encourage you to read my colleague Shari Ebert’s blog post “Why Hearing Loss Advocacy is So Important.”

Many of us have had different kinds of successful experiences asking for accommodations. Please share yours in the comments section below.

 

*If you would like to make a donation to the WALK, to help support HLAA’s many important advocacy and educational initiatives, support our advocacy by joining or contributing to the Walk4Hearing. If you’d like to support the Walk in my name (I have not yet met my fundraising goal!) click on my name and then move your curser to the right and click on Donate. Better yet, come walk with us.

 

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Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

 

 

Driving While Deaf: Not Taking My Own Advice.

I am not Deaf and not a sign language user, but I am extremely hard of hearing and I know how frightening it can be when the police pull you over and you’re unsure you’ll be able to understand them — or be able to make yourself understood. I also realize, thanks to my own recent traffic stop, how easy it is to make the kind of common mistakes that can get you in trouble.

These thoughts were prompted by the recent police shooting death in North Carolina of 29-year-old Daniel Harris, who was Deaf, is a reminder for all of us with hearing loss that we need to be extra cautious when pulled over by a police officer.

According to news accounts, Harris, who uses American Sign Language, was shot and killed after failing to pull over during a traffic stop near Charlotte. He was pursued by a state trooper as he drove to his own neighborhood, where he then got out of his car. The North Carolina State Bureau of Investigation is conducting a criminal inquiry into the incident and has declined to give further details.image3-1

Did the trooper not understand what Harris was saying to him, or vice versa? Investigators have not commented on whether Harris’ deafness played a role, but his brother believes that if the officer had known he was Deaf, things might have ended differently.

So what happened to me?

This summer as I was driving on the Massachusetts Turnpike (not speeding, I might add) I noticed a police car behind me in the lane to my left. He stayed there for many miles before finally turning on his lights to pull me over. The turnpike is a dangerous road, so I drove on to the next exit before pulling over.

As the officer got out of his car, I should have left my hands on the steering wheel where he could clearly see them, but instead I reached up to get a visor card identifying me as a deaf driver. I also reached over to the glove compartment (a risky move, I now know) to get my registration.

I should have watched as he approached the car so I would know on which side of the car to expect him, but I was too busy reaching for things. The next thing I knew, the officer was at the passenger side window. I was already confused about why I’d been pulled over, and I was completely nonplussed to see him on that side of the car. I’m not even sure I remembered to say, “I’m very hard of hearing,” which I normally do.

He ignored my offered registration and the “Driver is Deaf” visor card and said brusquely that, according to his computer, my driver’s license was expired. I didn’t understand what he was saying. I have a valid driver’s license. But then I remembered that four years ago I had replaced my Massachusetts driver’s license with a New York one, which is my official mailing address. I handed him the New York license. He looked it over, then grudgingly handed it back and walked away.

“Wait!” I cried. “I don’t know how to get back on the highway.” He didn’t turn around. I tried shouting. I thought about getting out of the car but decided that would be really stupid. I tried to wave him down as he drove by, but he ignored me. I was flustered and furious, but I eventually found my way back to the highway.

Other than his rudeness, nothing bad happened. If I weren’t a middle-aged white woman driving a VW Golf — who has learned to control her temper — it might have been different.

But I realize this kind of situation can be difficult and even dangerous for someone with hearing loss. Remember, a police officer can’t tell by looking at you that you’re Deaf or hard of hearing. Even if you tell the officer you have hearing loss, he’s still going to expect you to answer his questions. You need to be careful that you understand what the officer is asking. For example, unless you are sure he is asking for your registration, do not just reach over to the glove compartment to retrieve it, which could be misinterpreted as reaching for a weapon.

The situation is even more difficult at night, when the headlights from the police car behind you may blind you and make lipreading (also called speechreading) difficult. What if the officer doesn’t even get out of the car, but blares through his loudspeaker, “Get out of the car!” Or did he say, “Don’t get out of the car”? This kind of misunderstanding could get you killed, or at least roughed up. Unfortunately, the addition of hearing loss to a tense situation increases the likelihood things can escalate.

The American Civil Liberties Union and the actress Marlee Matlin, who is Deaf and married to a police officer, teamed up to produce an excellent video on how to handle a traffic stop if you are Deaf or hard of hearing. It has useful advice both for those with hearing loss and for those who hear perfectly. Matlin uses American Sign Language in the video, but it is also captioned and there is a voice-over for the hearing.

Another thing that can help is a visor card, informing police that you are Deaf or hard of hearing. The Driver is Deaf card from the Center for Hearing Loss Help can be ordered for $4.95.

There has been a lot of discussion on my website on exactly where to display the card. One suggestion, to tape it to the back window so an officer can see it as he walks up to the car, was nixed by those who thought such a prominent display would make drivers a target for muggers. The center suggests clipping the visor card to the driver’s side visor. You might also consider a second one for the passenger side visor as well.

The center also offers these other tips if the police pull you over:

  • If it is dark and you are able to, stop under a street lamp, or pull into a lighted parking area. This will make it easier for you to read lips.
  • Open your driver’s side window all the way so the officer can see you.
  • If it is dark, turn on your dome light.
  • Place both of your hands on the steering wheel well before any police officer approaches your vehicle. Police officers want to see both your hands at all times. Keep your hands on the wheel until after you establish effective communication with the police officer.
  • Show the officer your visor card and the instructions on the back so he knows how to effectively communicate with you.

You should also watch the officer closely as he gives you instructions. If you don’t understand the officer’s words, repeat: “I am Deaf [or hard of hearing]. I did not understand what you just said because I couldn’t hear you. Would you please write down what you just said?”

As the Harris case shows, those of us with hearing loss need to be extremely cautious if we are pulled over by the police. The visor card, and watching the video, is a good place to start.

 

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Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

 

For My Summer Vacation, I Went to Hearing Camp

Who says only kids get to go to summer camp? Last week I went to hearing camp. We didn’t sleep in bunks, but we did have sing-alongs, games and picnic lunches. And we spent a lot of time talking and, more importantly, listening.
 Hearing camp was a four-day program at the University of Connecticut at Storrs, sponsored jointly by the university’s Aural Rehabilitation Laboratory and photo-HRFthe Hearing Rehabilitation Foundation, run by Geoff Plant in Somerville, Mass.

Most people may know UConn because of its championship women’s basketball team, but the school also has a well-known Department of Speech, Language, and Hearing Sciences, of which the lab is a part. Four of the lab’s graduate students, who are earning dual degrees in audiology, led the one-on-one aural rehabilitation exercises — 90 minutes in the morning and afternoon daily. The warm-up for the morning sessions was rollicking sing-alongs, led by Plant. Even for an aging cynic like myself, it was fun. And combined with plenty of coffee, it did get the brain working.

Aural rehabilitation, in the broadest sense, teaches you to listen better. It is often used for people getting cochlear implants and sometimes for those getting hearing aids for the first time. It can take many forms, from computer programs to group sessions to individual sessions with an audiologist or speech-language therapist. The American Speech-Language-Hearing Association (ASHA) has a good description of auditory rehabilitation.

For this camp, four people with severe hearing loss (three of us with cochlear implants, one with two hearing aids) worked with the four audiologists. Each camper and each audiologist had at least two sessions together.

The technique that was used is called KTH speech tracking, a program originally developed by Swedish researchers. The version we used was designed by a team at Gallaudet University, a Washington, D.C., institute of higher learning for deaf and hard-of-hearing students.

Here’s how speech tracking works: In alternating five- and 10-minute sessions, the audiologist reads from a prepared script, stopping at the end of each line whether or not it’s the end of a sentence or even makes sense. The client repeats what has been read. The audiologist’s computer keeps track of how fast the client is responding. This is done with the speaker’s face visible, and with it covered. Not surprisingly, most everyone does better when the speaker’s face is visible. The exercises are designed to enhance the speed and agility of the brain to hear sound and repeat exactly what was read.

Program director Plant wrote the text we listened to — a supernatural suspense story about a boy and his mother from Australia. You might not want to sit down and read it, but it was effective for this kind of training.

If you’re new to hearing aids or a cochlear implant, auditory rehabilitation helps your brain adjust, which ultimately helps you hear better. The result is improved, faster, more accurate word recognition. If auditory rehab isn’t offered in your area, there are lots of ways to create your own version.

The easiest is to have a companion read to you from a book, stopping at the end of a line and having you repeat the words back. You can also listen to a recorded book, pausing it every few minutes to look at the written text to see how much you understood.

There are also several computer programs available online. The best-known of these is the L.A.C.E. program, which uses increasingly difficult exercises, usually with an increase in background noise. Background noise is the one thing, more than any other, that stymies people with hearing loss. There is also a fun computer game called Read My Quipsthat is designed to challenge you to understand speech amid noise.

So how did I do? I don’t know yet. The audiologists will enter the KTH results in a computer, along with the results from a speech-in-noise test (QuickSIN) conducted at the beginning and end of camp to measure my improvement. I am hearing better anyway, because I recently got a new hearing aid, but hearing camp gave me an excellent chance to try it out. I look forward to getting my results.

But I’m not finished yet — and I never will be. As Plant says, auditory rehab is an ongoing process. He likens it to going to the gym to stay fit. If you stop, it doesn’t take long for things to go back to the way they were.

Photo Courtesy of the Hearing Rehabilitation Foundation

This post first appeared on AARP Health on August 25, 2016.Living Better jpegshoutingwonthelp

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

The Hazards of Driving While Deaf

The death last week of 29 year-old-Daniel Harris, who was Deaf,  is a reminder for all of us who are Deaf and Hard of Hearing that we need to be extra cautious when pulled over by a police officer. Here’s a link to the New York Times article, which also includes heart-breaking photos of this very young man.image3-1

The risk is even greater if you’re black, as the Pearl Pearson case in 2014 showed. Pearl Pearson—a grandfather (with both a son and son-in-law in law enforcement), who was Deaf and black—was pulled over by a highway patrolman. When he failed to respond properly, the patrolman handcuffed him and put him in the police car. The incident was videotaped, and he was treated roughly enough to require medical attention

What should you do if you’re pulled over? This can be difficult and even dangerous for someone with hearing loss. Even if you tell the cop you have hearing loss he’s still going to expect you to answer his questions. Remember, you don’t <I>look<I> deaf. “Lady, do you know how fast you were going?” The correct answer is not to reach over to the glove compartment for your registration.

This situation is even more difficult at night, when the headlights from the police car behind you may blind you. What if the officer doesn’t even get out of the car but blares through his loudspeaker “Get out of the car!” Or was that “Don’t get out of the car!” That kind of misunderstanding can get you killed, or at least roughed up. This is even more of a possibility if you also happen to be young, male, or black. Add hearing loss and the situation is even more likely to escalate. (Harris was white.)

The Pearl Pearson case got a great deal of attention among the Deaf and HOH community, and a fund-raiser was held to help with medical and legal expenses. The local law enforcement community also paid attention. Pearson had a note on his car visor saying he was Deaf, but unfortunately he didn’t get a chance to show it before he was handcuffed and bundled into the police car. That visor message is something that all of us with hearing loss should have. You can download a copy and print it out from Google images.

Neil Baumann offers a visor card you can order for $4.95 that is laminated. His 2005 column on visor cards relates some alarming instances of people with hearing loss being pulled over and having their hearing loss misunderstood. Get yourself a visor card.

Then what? If you’re pulled over, the first thing you should do is unclip the visor message and place it on your steering wheel. Tell the officer that you are Deaf or hard of hearing and point to the visor message. Watch the officer closely as he gives you instructions. If you don’t understand the officer’s words, repeat “I am deaf (or hard of hearing). I did not understand what you just said because I couldn’t hear you. Would you please write down what you just said?’

Make sure the visor message is on the visor, not somewhere in your purse or the glove compartment where you’re going to have to shuffle around looking for it. The ACLU and the actress Marlee Matlin teamed up to produce a video on how to handle a traffic stop if you are deaf or hard of hearing. It has useful advice for both those with hearing loss (and those who hear perfectly). Matlin uses ASL in the video, but it is also captioned and there is a voice-over for the hearing.

As the Harris case shows, law enforcement didn’t learn much from the Pearl Pearson incident. Those of us with hearing loss need to be very very cautious when you’re pulled over. The visor card is a good place to start.

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Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

*This essay is adapted from “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids.”

How Dogs Can Help with Hearing Loss

One of the dangerous side effects of hearing loss is isolation. You have trouble hearing in social gatherings, so you tend to say home. Isolation can lead to depression, and depression is a risk factor for cognitive decline. Cognitive decline can end up being dementia.

Max in snow
It was a very cold day!

You can’t cure hearing loss, but you can treat it. The most direct way is with hearing aids, but sometimes hearing aids aren’t enough to make socializing easy, and so the threat of isolation, depression, cognitive decline and dementia is still there.

Here’s another way to treat hearing loss: Get a dog!

I don’t mean a service dog — though they can be very useful for people with hearing loss. I mean a pet.

I’ve always liked long walks, and for years I distracted myself over three- or four-mile jaunts with recorded books. I listened to everything from Moby-Dick and Anna Karenina to novels by Carl Hiaasen and Elmore Leonard.

But then I went deaf. Or, more accurately, my hearing declined to the point where I could no longer hear with headphones. I had sometimes walked with friends, but around the same time they dropped away for one reason or another. I was often left walking with my thoughts. Nothing wrong with that. Sometimes I’d even take a notepad along in case I thought of something particularly brilliant.

But thinking — brilliant thoughts or not — was not enough to get me out day after day. So I got a dog, a puppy. At first I was out four or five or six times a day, for short puppy-relief walks. As he got older, we resumed my long morning walk.

A dog is not for everyone. Weather is no deterrent to a dog’s need for a walk, as you can see in the picture of my dog Maxie on a sub-zero day. If you are unsteady on wintry days, you might want to consider a small dog. Or even a cat.

I like all kinds of weather, and I appreciate the push out the door on a cold day. A dog prompts conversations with strangers, and over the years I’ve made new friends, whom I know mostly by their dogs’ names, and a slew of casual acquaintances. It’s easy for me to hear in the open air, and I often have conversations at the dog park, or sometimes stopping for a chat mid-walk. We would talk about dogs at first, but as time went on, some of my dog friends became real friends, and then we talked about everything.

Plus, a pet has other health benefits. It can lower your blood pressure and cholesterol, says the Centers for Disease Control and Prevention, and — thanks to its boundless, unconditional love — help reduce your stress. Also, dog owners get more exercise than non-pet owners, and the physical activity helps older dog walkers have greater mobility inside their homes than others, according to studies funded by the National Institutes of Health.

I miss listening to recorded books, but on the other hand, walks with my dog have helped me become much more aware of the sights around me — cherry trees in the spring, branches glittering with ice in the winter, a hawk soaring, a raccoon in the crook of a tree — and the sounds as well, including conversation.

A baby probably would have the same result — everyone talks to parents with babies — but I’ve had my babies, and my babies are not yet ready to have babies of their own. So for now I enjoy the benefits of a different kind of child — a furry, four-legged one.

 

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

This essay first appeared on AARP Health, August 17, 2016.