Deafblind Awareness Week

What is deafblind?

Deafblind is a combination of deafness and blindness.

Some people think deafblind cannot hear at all.

Most deafblind people hear at least a little.  Most wear hearing aids.  Some wear CI’s.  Which are cochlear implants.  The look like round disks on the head, often hid by hair. There are many different kinds as the technology improves.

What can deafblind people hear?

It varies.  Some can hear high pitched tones.  Some can hear low pitched tones.  Some can hear and comprehend sounds, or even most speech with their hearing equipment.  The continuum can be constantly changing, based on weather, health (sinus problems and allergies), environment, background noise, and more.  If there are loud, non-speech sounds, they are often picked up before speech, which cancels out the speech.  This occurs with, or without, hearing aids.

The blind part.

Again, this is as compound/complex as the hearing.  To be legally blind means less than 20 degrees of vision.  Which is a small vision field.  Basically, looking through a single toilet paper roll.  For some – this 20 degrees is crystal clear.  It may be only central.  Or only peripheral.  Or a combination.  And then, comes the sliding scale as to how clear it may, or may not be.  Which, like hearing, can vary based on weather, lighting, health, sinus problems and allergies), environment, and more.  Some people only perceive shadows.  Others, only shapes. While some can still read large and bold print.

What can deafblind people do?

Anything they want to.  Or, maybe it should be, anything others allow them to.  They can work almost any job.  If employers will hire them. Some are very detail orientated, and can see the fly on the shed, and not the dog on the floor in front of them.  About the only thing not possible at this point is a driving job.  And yet, self driving vehicles are closer every day.

What age do people become deafblind?

Every age.  From birth to older adult. A person may go deaf first, and then lose their vision later.  They may lose them both together.  Or they may lose their vision first, and hearing later.

Can older adults learn to live deafblind?

Definitely.  Hearing aids may help.  Braille may help.  Canes may help.  There are many types of equipment that will allow a deafblind individual to access anything they want. Including phone calls, internet, and independent travel and shopping.

What is the biggest hurdle for deafblind people?

Lack of transportation and safe ways to walk to grocery stores, doctors, and even somewhere fun to relax.

What is the second biggest hurdle?

Communication.  Some deafblind people talk, make phone calls, and go anywhere they want, with, or without, a cane. Others only email, and travel with, or without a cane.  Still others have enough vision to lip read, or use sign language.  Especially if they were deaf first, and learned sign language as a child.

What assistance does a deafblind person need?

Ask.  No two have the same needs.  Some are happy to talk on the phone.  Others prefer to only communicate by email or text, and read it in braille or print to fully comprehend the message. Most important, don’t treat them different.  They have the same wants, needs, and desires as everyone else.


Introduction to Usher Syndrome

Introduction to Usher Syndrome

Usher Syndrome is considered to be a very rare combination of variable vision loss, hearing loss, and balance issues. Vision, hearing, and balance issues occur at different levels at varying stages of life.

Today, many children are tested for hearing issues at birth. This was not always the case. If there is reason to suspect that a person with hearing loss may eventually have vision loss as well, doctors may test for Ushers.

There may be many undiagnosed cases among adults who did not know that their vision and hearing loss are connected. In previous generations, including people who are middle-aged and older, many doctors did not know that Usher Syndrome existed. Or, did not connect the vision, hearing, and balance issues.

There are many genetic markers that can indicate whether or not a person has Usher Syndrome, and which sub syndrome they may have. However, insurance won’t always cover genetic diagnosis. Joining clinical trials increases the likelihood that a person may discover which sub syndrome they have.

Usher Syndrome 1 has nine sub syndromes. While each of these is a little bit different, Usher Syndrome 1 is marked primarily by profound deafness at birth. People with Usher type 1 will also have balance problems, first indicated by difficulty rolling over or sitting up as an infant. They will have some vision. Their night vision generally begins to decrease before age ten.

With intervention and education, a child with Usher Syndrome 1 can lead an almost normal life. While hearing aids and implants may not help, they can learn sign language to help them through the early years. They will also learn braille and be able to rely on a braille display in order to communicate with the world around them as their vision decreases.

There are new types of sign language that are being developed. Finger spelling, though slow, has been around a long time. However, unlike traditional sign language, people don’t have to rely on vision to see it.

A new form of haptic tactile signing is being developed, that is often done as signs drawn on the back by an interpreter. In many ways, this tactile signing is a form of contracted sign language that is felt, rather than seen.

Haptic Sign Language may not be appropriate for all children, or for all adults. Not everyone is comfortable with touch. Or, feels safe when touched by others, especially outside of a small trusted circle of family and friends. In these cases, a braille display may be a more comfortable choice.

Haptic Sign Language may also be very difficult in certain situations. Particularly winter, when multiple layers must be worn, along with heavy coats. It simply may not be felt, or felt correctly. In some places, having someone stand, or sit directly behind the deaf and blind individual may be impractical, dangerous, or not possible. Especially in places with high backed chairs. Again, this may be the place for a braille display, or one of the future braille Ipads.

Usher Syndrome 2 is categorized by moderate to severe hearing loss at birth. There are several subcategories of Usher 2. It is possible, that a child whose hearing is not tested at birth may not even be aware of the hearing loss until they prepare to enter school, or other busy noisy situations. Children with Usher 2, may not begin to show decreased night vision until late childhood, or early teen years. It is possible, that they may not realize they have night blindness until early adulthood, if they’re not frequently in low lighted situations. Balance problems do not usually occur with Usher Syndrome 2. However there is one subcategory that may have balance issues to a lesser degree than people with Usher 1 or 3.

Children with Ushers 2, are at a greater risk of not being aware that they will lose their vision until a very difficult time in their lives. Many times, ophthalmologists, optometrists, and other specialists are not aware of Usher Syndrome, and do not make the connection between hearing loss, and vision loss. Vision loss may only noticed by the child, and not recognized by the adults around them. Each time the child grows accustomed to their current vision loss, their clumsiness decreases. They suppose their clumsiness is age, or growth spurt related, and expect to grow out of it. It can often be difficult to get a diagnosis at this stage. And it can come as a greater shock to the parents, and teen, at often a most vulnerable age.

Many feel like all hopes and dreams have been totally shattered. At this stage, parents may recognize that it is going to be difficult for them to adjust to living in the world of the deaf and blind. It’s an unexpected situation, and often, they have no role models in the local community of a deaf and/or a blind person, much less a deaf and blind person, who has been successful at a career, and family, or even in their personal life.

The Internet is helping to change the feelings of isolation. There are now many examples of books and blogs of people who are both deaf and blind who are successful in careers, family, and life.

Don’t let the most difficult time of life, the teen years, keep someone from doing everything they want to do. Even though the level of deafness will increase, there are hearing aids and implants that can help. As those implants improve, they will be able to help even more. Even with vision loss, at this stage it is still easier to learn braille than at a later age. Braille can be used to label, read, and write. With a braille display there is no limitation to how far a person can go, or what they can do.

One part of life teens most often regret, is the loss of driving. Although it is a privilege, it is also required by many employers. Teens can plan for the day the self driving cars become available for the deaf and blind. Then they can program them for where and when they need to go.

Usher Syndrome 3 is referred to by some people with Usher Syndrome as the adult onset Ushers. This is the most frequently overlooked, and under-diagnosed version of Ushers. Hearing loss at birth is minimal. It will progress in childhood, teen years, and into adulthood. By middle adulthood, most people with Ushers 3 wear hearing aids.

It is often around this time, that ophthalmologists or optometrists are first beginning to notice vision problems. However, night vision difficulties may begin as early as in the teens, or early adulthood. This loss of night vision may simply be passed off as common, as it happens to a lot of people.

People with Ushers 3 often have balance issues, However they may not be as profound, or noticeable, as those with Usher 1. They may be noted as clumsy, or simply not paying attention to their surroundings.

People may be in their late 30s or early 40s before they begin trying to seek answers as to why they have balance issues, hearing issues, and vision issues.

Even with hearing tests at birth, Usher Syndrome 3 would be missed, due to close to normal levels of hearing. Unless a person has a reason to believe that they may have Usher Syndrome as an adult, they are less likely to have been tested for the genetic markers.

The strangest thing about trying to receive a diagnoses as an adult is convincing the ophthalmologist, optometrist, audiologist, and general doctors to understand the reasoning for wanting a diagnosis. After all, there’s no cure, so why does it matter? This is often why people with Ushers 3 may take ten, or more years, to receive an accurate diagnoses. Each doctor will treat their own individual areas of concern, while ignoring the correlation between the three.

The audiologist will give a hearing aid, if insurance will cover it, and pay no attention to the vision or balance issues. The optometrist, or ophthalmologist will prescribed eye glasses and other low vision devices for his long as they can, ignoring the hearing and balance problems. After all, lots of people have those. They’ll simply refer the patient back to their general doctor. And the general doctor will give medications for the balance issues, and simply refer the patient back to the audiologist, optometrist, and ophthalmologist for vision and hearing problems. Or, all three doctors may want to pass off balance, hearing, and vision issues as simply sinus and allergy symptoms.

It can be a vicious cycle.

The sooner a person with Usher Syndrome 3 begins learning braille, screen readers, and other assistive technology, the better they will do. It is still possible to learn braille at any age, although it becomes more difficult if the skin on the fingers has become hardened. Memory does play a part. However, learning is still possible.


Haptic Touch

“103 Haptic Signals English” World Association of Sign Language Interpreters accessed 03/01/05

“Social Haptics” Deafblind Information by Senses Australia accessed 03/01/05



“Usher Syndrome” Cleveland Clinic accessed 03/01/05

Wallber, Josara AuD, CCC-A “Understanding Usher Syndrome” ASHA American Speech-Language Hearing Association accessed 03/01/05

“What are the characteristics of the three types of Usher syndrome?” National Institutes of Health accessed 03/01/05

“What Is Usher Syndrome?” National Institutes of Health accessed 03/01/05

Websites for further Exploration:

#UsherSyndrome #Usher #deafblind #deaf #blind #Usher1 #Usher2 #Usher3

Blind School for Adults

Blind School for Adults

Two years. Yes. Two years. Actually, many, many more.

I’ll ignore the decades of unexplained bumps and bruises. As well as the decades of ghostly shapes appearing out of nowhere, and materializing as people, inches in front of me. Or cars appearing on my left front bumper, when none had been in sight.

I never had more than 3/4 of one eye of vision.

I’ll start with waking up with a nasty cold, and plastic wrap eye.

Usually, plastic wrap eye would improve in a few days.

Not so, this time.

And, to make matters worse, bright white lights appeared when I would close my eye at night. It was the brightest white I had ever seen. Even after being in the dark for a while before going to bed. It wasn’t the leftover flash of a turned off light bulb. And it lasted for hours.  I couldn’t sleep.

Before long, color changes occurred. Grey shorts turned purple before my eye. Now, colors may, or may not, be what I expect. I no longer trust my color vision.

While trying to get the training skills I would need to live blind, it was determined to include my deafness in my case.

This added a year to the process of getting into the state school for blind adults. I am glad I did wait. My hearing aid has made all the difference in my ability to listen and learn the skills I need.

Living in an adult school for the blind is somewhere I never thought I would find myself.

Goodness. I thought I had given up dorm life a few decades ago. I remember how wild and out of control some of those college students were. Especially during finals week.

As an older adult, it can be difficult to know what to expect.

My biggest fear of it was the fear of sound. Due to my hearing loss, sound often overwhelms me. I feared it would be a place where people would scream, yell, and play loud music all night long.

Would they be like me? Would they have only a tiny hole of semi clear vision? Would they be totally blind? Would they be confident? Or scared? Or even scary?

Well, I found a bit of everything at the training center.

I met people who were confident. A few who were arrogantly confident and selfish. And many who had little, to no confidence.

It wasn’t that bad. Actually, the dorm experience was mostly good. Except for a few males, of course.

Doors often slammed, as there was no way to close the doors quietly. And in the study room, across from my room, Jaws would jabber at all hours, if anyone walked by. Oh, and if all the computers jabbered at once, I would feel very sick.

I learned from those who were totally blind, and trying to navigate the building by cane alone just how difficult that could be. Trying to hear them speak, and give directions to them was not always easy. If I was facing them, I’d mix up “turn left” with “turn right” nine times out of ten.

I learned to navigate the building blindfolded. While doing so, I realized how vital sound is to knowing where you are in space. As much as I don’t like to talk, and have little to say, whenever my O and M instructor became too quiet, I wondered if I had gone somewhere, like a women’s restroom, and he hadn’t followed.

Obviously, with my hearing loss, sound is different anyway. Many times, I’m sure he spoke to me, and I couldn’t hear him. Even with my fantastic hearing aid, it can’t give me fully functioning hearing.

In fact, part of my time was spent re-learning to hear. I received my hearing aid only weeks before arriving.

Sure enough, the sound quota was overwhelming. At times, even a few people talking would make my head buzz, and I’d get dizzy. Jaws jabbers constantly. And usually, in an impossible to comprehend male voice. So, I learned VoiceOver in a female voice, at a slow rate of speed. Actually, at a normal conversation speed.

I gained confidence in my abilities, as I lose my vision to do many things. Maybe not everything, as no one has the time to do everything, nor will my physical disabilities allow me to do some things I can only dream of.

I want to be confident when walking with my long cane, and my mobility cane. I don’t want to be arrogant. I don’t want to be selfish. That’s as dangerous as arrogance. I consider my needs equal to the needs of others.

I look at selfishness in a few ways here. Some students had family members who felt the student was being selfish by being in the center, and learning independence skills. Well. No. In general, no. However, if an emergency occurred at home, and they refused to go home for a day, I might see that. In general, I see it as selfish to not learn to be independent. Or, at least as independent as possible.

I figured, I had two choices. Like with my physical disabilities, I could selfishly sit at home doing nothing, and prevent my husband from doing the things he wanted to do. Or, I could take my cane, and maybe even look at getting a wheelchair, for some outings, and go. Allowing both of us to lead an almost normal life.

Which was more selfish?

Now, yes, I considered taking a long weekend, about four days if needed, to get one of my books published by the expected date. Selfish? Not really. It would have given me a much needed physical break, and an experience using VoiceOver to publish. As it turned out, that weekend fell on a three day weekend anyway, and I was able to complete the project on that weekend.

However, some things I do have to be a bit selfish about. Due to serious food allergies, I cannot have gluten. My first night there, they had made sandwich bags for the students as a dinner. Every item in the bag, the sandwich, the chips, the cookies, were gluten. That was not a good night. Luckily, I had anticipated problems, and brought soup I could eat.

Some adult schools for the blind are still set up for helping those who are low tech only. For some people, low tech may be their only option. While it was neat to see and feel raised and large print checks, I haven’t paid anything by check in at least eight years. Though for some, that is the best, or only, option.

I used a lot of my time in home management covering cooking aspects with the blindfold on. That was a fun challenge.

Brownies with the blindfold. Sounds easy? Mix, pour, bake, and take out of the oven.

Not so easy.

Due to gluten intolerance, and to combine skills, I decided to check the box to verify gluten free, and test various apps on my phone to see if they could read the ingredients. No luck reading them with the apps I had.

I easily followed my blind instructor to the counter where she had set the mixing bowl and the other ingredients. While blindfolded, I did not set the box in the bowl.

I poured in the mix, added eggs, and a little liquid correctly as we talked about how to make sure that no egg shells made it into the bowl. I began mixing with a long wooden spoon, and lifted the bowl as I did so.


Something was wrong.

My hand holding the wooden spoon had gone way too far down. In fact, I couldn’t find the bottom of the bowl.

I peeked. Yikes! Brownie mix all over the counter, cabinets, and floor.

I cleaned it up while blindfolded. Then, while not blindfolded, I searched the cabinet the bowl had come from. Sure enough, we found the shattered bits of plastic in the bowl under it.

A real life example of things that can go wrong, in the best of kitchens. I’m sure I learned more from actually having this happen, and having to clean up the egg yolks and powered mix, than if I had read about it.

Before I had any O and M training, we had another unforgettable experience. Let’s call it grocery day. I went blindfolded with my instructor down the elevator, to pick up a cart loaded down with groceries.

I had done well with the cane, and no cane training. So my confidence up, I opened a hallway door. I only knew I was supposed to check to be sure it was clear to walk through.

I reached for the doorframe.

I missed. And my hand found someone standing there.

I had never been so embarrassed in my life.

It’s bound to happen to everyone when they first begin traveling without sight. As embarrassing as it was, I’d rather it happen there, than at some random business out in public.

It wasn’t funny. Though, I can laugh about it now.  I doubt I will forget the correct way to check a doorway, ever!

Learning braille as a newly blind middle aged adult is quite challenging. First of all, most sighted people don’t take care of their hands. The skin is often dry and rough. And they don’t practice feeling textures. After all, they can see them. In a society that discourages touching objects unless necessary, this is no surprise.

Braille gives blind and deaf people an opportunity to be on the same page as a print reader. Read a word in braille, and the pronunciation is the one the reader recognizes. Even for a deaf reader, especially one who loses their hearing later in life, they recognize the sounds the letters stand for. And if not, they can feel the vibrations from electronic recorders to help clarify a word’s sound.

Basic braille isn’t too difficult to learn, and I already had a basic understanding of it through a distance learning program.

Contracted braille, on the other hand was a challenge. There are 180 contractions in the current Unified English Braille Code. As a middle aged adult, retaining all the symbols was a challenge. More mental than physical.

After all, as a writer, I prefer spelling words out, and clearly stating what I intend to say. Using basically text speak, was something that made me cringe.

I finally decided I had to learn it to be able to read current brailled items. With my own flashcards, and my own learning style, I quickly moved on.

One of my favorite things was having one of my short stories brailled on an embosser. And yeah, embosser to me meant the shininess on photos before losing my sight. A two page print story became a six page story in contracted braille.

Some blind people think the use of braille will go away as people rely on screen readers and other speaking technology.

For people with Ushers, the spoken word, whether by person or machine, cannot replace the written language due to the fact that hearing disappears as well as vision. And sometimes, hearing goes first.

My thoughts on braille are complicated. I know its importance to me. Eventually my only way to communicate may be with a braille display hooked to a computer.

What kind of braille will I use? There are many kinds of braille. Computer braille, math braille, reading and writing braille without contractions, reading and writing braille with contractions, and personal contraction braille. Personally, I think I will eventually return to reading and writing braille without contractions for work on the computer.

In printed braille, one print page may be as much as three brailled pages. However, with a braille display, space is not an issue. Unless a word has more letters than braille dots available on the braille display. Those are few and far between.

The main reason I want to continue using uncontracted braille is so that I don’t forget how to spell. As a writer, that would be devastating.

One of the most challenging aspects of Ushers is being in that in between spot. Too blind too read, not blind enough to need a CCTV, or, not knowing if you’ll have vision for long enough to make it worth while to own one.

Not very long ago, CCTV’s were only recommended for people who retained enough vision to be able to position the pages or books on a table and move it about. Then, the tables went static. Now, there are portable options which are little more than a tablet on a stand! They can be moved, they can read, they can save, and even be useable with a braille display.  They may even have multiple stands of varying sizes and shapes to place the tablet or phone on.

Convincing the state to buy both a braille display and a CCTV has been a challenge for years because it was assumed totally blind people could not use a CCTV, and had no ability to access print materials with one.

Sure. I can read a few words in print. Very few. I can see enough to position a page. For how long? Unknown. With the new systems, it won’t matter. And, I can save documents to my computer that have been read by the newer CCTVs. I don’t have to buy, or use a scanner, and an expensive program to scan and read it back to me.

Luckily, I did pick up on my tech training very quickly. However, I’ve been writing, editing, and designing web sites for years, so that was not a surprise.

Even for people with less tech knowledge, it’s not so much the tech that is the problem, it’s the human memory. How much can the brain hold and retain in a short amount of time.  There are thousands of computer shortcuts.  Like contractions, they confuse the mind.

Screen readers are great, and have improved. Their ability to distinguish many words is not always accurate. Not to mention all the words that are homonyms, and sound the same when spoken. Or, words, such as roof, that are pronounced so differently in various regions as to be unrecognizable in others, or by screen readers.

With Ushers, we may have a little time from the moment we are legally blind until our sight may be completely gone. Couple that with little hearing, and learning as much as is needed takes time and practice.

And yes, there is twice as much to learn. Screen readers are only half the equation. They will mostly work, as long as hearing still works. Even before it goes, turning to a braille display will make life easier. Reading again, with the fingers, instead of the eyes.

Future Aspirations/Goals: A few more novels to finish. To reach those who want to be reached with enjoyable travel stories.

Gratitude: Glad to be able to prepare for the day I cannot see.

#UsherSyndrome #Usher #deafblind #deaf #blind #Usher1 #Usher2 #Usher3

Molly Watt – Usher Awareness

Molly Watt is a young British woman on a mission to bring awareness to Usher Syndrome.

Usher Awareness Day is September 19th!

I will post two blogs  that day.  An indepth look at Usher means to families of the individual who is diagnosed with it, and a blind school story.

However, Molly Watt, @mollywatttrust, will be posting all kinds of blogs, along with others who live with Usher’s Syndrome.  Recently, she has been posting photos of “What Usher Looks Like.” Like so many medical conditions, it is invisible.

She has a blog and website designed to help those learning to live with Usher syndrome.

Many of my followers may wonder Usher Syndrome is.  For a more indepth description, check back Saturday, September 19th!  For now: It is a medical condition characterized by changing combinations of deafness, blindness, and balance problems.

Check out Molly’s site to help spread the word and raise funds for people with Usher so that they may continue to live and work productive lives.

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