Isaac's tale

The Sunday before the hurricane was when I realized that it would probably hit us. My biggest and most pressing worry was for Bristol as she is almost 15 years old and would not do well in our home without power to cool the place down. I was also worried about her ability to toilet independently in a hurricane. My backyard is sheltered, but I needed her to be able to move quickly and I was worried that she'd not see where she was going. Because of these worries, I called a local friend who usually watches her if I'm out of town. She had just brought her back to me when I returned from New York. And she very kindly drove back over and picked her up. Her, her family, Bristol, and Gracy who is now her pet dog, and who was my retired guide, drove to Arkansas to ride out the storm.

Now it was me, Mill'E-Max, and Laveau. My first order of business was to get my supplies ready. I filled every container I could find which could be completely closed with water, and stuck it in my freezer. I bought things like crackers and peanut butter and some fruits or veggies which did not need refrigeration. I took all of my chairs and table off of my porch, and I charged up all of my electronics.

My power went out for the first time around 6 that Tuesday night. I was frustrated because I had just put my last frozen pizza in to bake. However it came right back on and lasted until around 10 that night.

The rain really started to pour, and the wind picked up. I could feel my house vibrating. I walked through my house, making sure everything was ok, when I felt a drop of water on my head. I thought I was imagining it, so I stood in the same place, and a few seconds later felt another drop of water. I then said a whole bunch of very bad words and went to find a large pot to catch the water from the leak in my roof.

Since I really couldn't do anything else, I mean, I can't really see or hear the hurricane, and I surely do not want a tactile hurricane experience! I curled up with my book (it was "The Red Tent" by Anita Diamond and will officially be known in my head as "the Hurricane Isaac book."), and went to sleep. Yes, I'm so deaf that I can sleep through a hurricane.

Mill'E-Max curled up to my back, and Laveau lay on my legs. Eventually I fell asleep, but was awakened by the dogs alerting me to a sound. They lead me to it and it was part of my ceiling in the room with the leaky roof. It had now become part of my floor, and there was soggy sheetrock, dust, and paint chips everywhere. I said some more bad words, and drug a chair to block that area off, so the dogs couldn't get into that mess.

I then huddled up with the dogs and used my iPhone and braille display to talk to my parents, to friends, and to check the alerts. My connection with the world narrowed down to a phone, and the fragile pins which make up my display. These things alone made it possible for me to know what was happening beyond my shaking house.

And that is basically the way things went for a day or so. This storm was like that unwanted houseguest... it just! would! not! go! away!
When I went to take the girls out, I felt more water hit my face. I was worried that there was yet another leak in my roof, but it was only the wind, driving the rain in sideways through the gap between door, and jam.

I got out a 30 ft. leash, tied one end to my fridge, which was the strongest thing I could think of, and clipped the other end to Mill'E-Max's collar. I was worried how'd she'd manage out there and was ready to help her if she needed it. Both she and Laveau were troopers, though and went out, took care of their business and came back in. Laveau was patient and waited her turn until Mill'E was done. After that, I gave them some pig tails to chew on, and did some more texting/checking of weather reports.
It was a very long 24 hours. But we made it through and I went on my first post-hurricane walk on Thursday morning.

A neighbor said that there were no down power lines in this area, so I felt safe in taking the girls and hitting the streets. Laveau gets a gold star for guiding me around all of the debris on the sidewalks. There was a man working on removing a tree which had fallen across his yard, and so many people out, looking around and assessing the damage.

The first two days or so were not too bad, temperature-wise. But Thursday afternoon, things got pretty nasty, and by Friday, I had made up my mind to go to a hotel after having a very vivid dream in which my dogs died of heatstroke.

Before I left, I cleaned all of the freezers and my fridge, as well as picked up all of the large chunks of drywall from my ceiling. My parents found me a hotel in the central business district and Laveau, Mill'E-Max and I were off on Friday afternoon.

Let me tell you, that air conditioning felt sooooo good! I took a shower and got ready for a nap, when Mill'E-Max told me she needed to use the bathroom. The CBD doesn't have much grass, so we wandered around for a while until we found some. By then, I was very confused as to where I was. I didn't wear my hearing aid and I had forgotten to bring my iPhone so I couldn't ask for directions back to the hotel. Yes, I'm aware that this was not one of my brightest moments, but my brain was pretty well fried by that point.

Thankfully, Mill'E-Max remembered where to go, and we arrived at our hotel room in no time. I touched the braille to make sure, and the sign said room 323. I said yet more bad words and stomped off to the elevator. The whole time Mill'E-Max protesting that the room was right. I looked at the little braille placard on the outside of the elevator and it said floor 2.... I was confused. Mill'E-Max guided me back to the same room and nudged the door handle with her nose. I looked at the braille again, and it still! said room 323. I then felt a little higher, and noticed that there were raised print numbers. I read them by touch and it said room 215 which was my correct room. So the dog was right and I should have listened to her. If she were human, she'd have never let me live this down!

I talked to the lady at the front desk about this issue, a few days later, and she said "Well just read the print, it's right..." I made a bad face at her and explained, using small words, about braille. Then I explained to another worker just because I wanted to be sure the hotel got the message and I did not trust the first lady to deliver the message.

I enjoyed my time at the hotel. I basically slept for the first day I was there, only waking up to take dogs out, to drink water, and eat a bit. I came home on Labor day, and some friends helped me vacuum the rest of the sheetrock dust and paint flakes.

Now pretty much everything is back to normal and Bristol came home, so we are together once again!
I'm crossing my fingers for a hurricane-free rest of the season.

New York State of Mind

This is going to be super, super long. It will also be posted in multiple places, so I'm just warning y'all. If you are interested in the trip, grab a cup of your favorite beverage and a snack and relax, it's gonna be a bumpy ride!

My SSP and I left MSY an hour and a half late. This meant that we arrived at LGA an hour and a half late. We found our driver waiting, and threw our suitcases into the back of his car. After some words about the dog (no, she doesn't bite), we headed to HKNC. New York was a lot greener than I Imagined it to be. It was about a 45 minute drive to the center.

We arrived and were shown to our room. My SSP, Laveau and I all shared a room. We quick freshened up and then ran to the pre-conference meeting.

First order of business was for Laveau, and the other guide dog, Walter to say hello. The other instructors were Bapin, and Scott Davert from HKNC and Bruce Visser from Seattle. We all chatted for a while and then got down to business, planning out the week and dividing up responsibilities.

I taught the Apple Mac portions of the program, and shared the Apple IOS section with Scott who, I might add, was a joy to work with. We got the interpreter situation mostly straightened out (so we thought) and broke up for the evening. I went and got dinner with my SSP, then it was back to the room where I fell into bed.

Monday started with more interpreter issues. We had five student trainers at this seminar, two were blind/hearing, one was sighted/hearing and two were Deafblind, in addition to the 4 Deafblind instructors using ASL either tactually or with close up tracking. Once we settled the interpreter situation, some people from HKNC talked about various things.

That afternoon, I worked with students, describing the keyboard layout of an Apple Mac, and using Apple mail. Once the classes were finished, we had a quick staff meeting where it was decided that we'd offer night labs for the rest of the week. After the meeting, Scott and I met in his office for a while and planned out the next day's sessions. And where I banged my head on his desk repeatedly and bemoaned my failure as a teacher.

Tuesday morning, I gave a presentation on the basics of using Apple Mac with the built-in screen reader, Voiceover, and braille support. I also talked about the differences between a screen reader for a PC and the Apple Voiceover. I introduced the finder, and screen layout, as well as the Voiceover keys and the Trackpad commander. I came away wanting a newer Mac, because mine doesn't have one of those nifty trackpad thingies.
That afternoon, I did more hands-on instruction-- watching as my student explored the finder.

That night, a few of us decided that all of the wholesome HKNC country living was making us crazy. We left the lab in the capable hands of Bapin and Bruce and went to a bar where we drank too much, laughed too much, and generally had a wonderful time, although we stayed out too late!

Wednesday morning, Scott and I presented on using Apple's iDevices with braille. I also did a demo of using IP Relay on an iPhone to make a phone call. We demonstrated other iOS apps such as Messages and Safari. Scott and I have the same sense of humor so made a good team.
That afternoon, I worked with students on using the rotor to change ways of navigating iDevices. That night I helped a student in the lab send her first email with a braille display and an iPod Touch. It is always my favorite part of teaching when my students accomplish a goal, which my student did, after some struggle. I also got to look at her Focus 40 Blue braille display. It was the newer model and I liked it.
Thursday was the Bruce Visser show, where he taught us all about screen magnification solutions for both Mac and PC. Bapin also showed us how to work with Window Eyes and Non Visual Desktop Access NVDA, which is a free screen reader for Windows machines.

By Thursday afternoon I was really dragging. I spent that time, working with hearing students. They each got to make a relay call, which was wonderful. It was also quite a bit of fun, as we kept finding things to laugh about during the session.

That evening, between afternoon and evening sessions, Scott, my SSP and I went into Port Washington where we met my friend Kerri for pizza. We had fun talking/texting across the table, and I got to try New York Pizza which was delicious. I was a good girl, and only had Coke.
That night's lab was more of the same working on making relay calls. After the lab was over, we had a bit of a gathering in my room which didn't break up until the early hours of the next day.

Friday was a killer day. I was really dragging. That morning, we learned more about NVDA and news apps for the iOS platform. I skipped lunch and instead went to my room and lay on my bed and tried not to fall into a deep sleep.

That afternoon was final tests, evaluations, and a funny incident involving another guide dog chewing on my chair and making it vibrate which startled me and made me laugh. It was probably made more humorous because I was very sleep deprived by that point.

That night turned into a big party. A bunch of us met at a bar in Port Washington. I decided that since I was on Long Island that I'd drink Long Island iced tea. I had about three of those, and then switched to a drink called the Motherfucker which had about seven different kinds of alcohol in it. I shared about five of those.

Now, since what happens in New York, stays in New York, I won't get into specifics. But I will say this. Some Deaf/Deafblind people may have gotten up and danced. And some Deaf/Deafblind people may have even sung kerioke. And some Deaf/Deafblind people may have even gotten pictures of them singing kerioke posted to Facebook. It was a very fun night, bruises and all! I wanted to be the designated driver, because alcohol improves my driving skill! However nobody believed me, and so I was bundled into a cab, and I staggered in around 2 ish.

The next day we went into New York City. My SSP and I had all of these plans about when we'd leave, and lets just say that we missed that 7:30 AM train. However we were on the rode by 11. We arrived in Penn Station, and after fortifying ourselves with the universal hangover cure of Star bucks, we took a subway to the Majestic Theater for Phantom of the Opera. While in the subway, I tried to walk off of a train platform, but thankfully, Laveau put herself in front of me and shoved me backward. Good dog, I guess I'll keep her!

I had originally called the Majestic in late June, to ask about ASL interpreters for Phantom. Their reply was that Deafblind people didn't go to the theater so I'd have to bring my own. So I talked to my SSP who happens to also be a law intern, and she worked her way up the chain of command. Nobody wanted to give me interpreters. They wanted to give me the script, and they wanted to do braille CART, but finally! PAH! A demand letter was written, and signed by a lawyer, explaining the law and requesting that they comply. And they did, four days before we were scheduled to see the play, we got word that I'd have interpreters.

I ate a New York hotdog, and showed up to the theater. It was old and beautiful, with intricate ironwork. I walked up a long and winding flight of steps to find that we had gotten our own private box.

It was so cool! So, so sosososososo! neat! There were comfortable chairs, and a table, complete with pillow, for me to rest my arms upon.

The play was amazing! I really enjoyed it, and loved the difference between everyday signing and this which was much more stylized and just, expressive in a totally unique way.

And since you are all probably falling asleep, I'll end this entry here and write another one all about my day in Manhattan!

To Read

When I was in first grade, my class took a field trip to the Public Library. I remember that library smell-- dust, and paper, mixed with the aroma of focused silence. We trooped around, looking at the brightly colored books. I don't remember anything of what the teacher or the librarian said, but I do remember how I felt. After the talk, explaining the library and probably the Dewey Decimal System (something I still do not understand to this day), all of my classmates broke up into small groups to explore. I sat, on a hard wooden chair and waited to go home. It's the only time in my life I've ever wished to be sighted.

I could read using a closed-circuit television (CCTV) which magnified the text of a book onto a screen. While I managed to get my school work done using this device, it left little time, nor inclination, to read for pleasure, so I didn't. But I always wanted to read, just like the other kids in my class, I wanted to look at the different books, pick out a few, and take them home.

The reading opportunities for people with print-related disabilities have expanded a great deal in the last twenty years. We have
<"The Library for the Blind and Physically Handicapped">
and
<"Book Share">
As well as other options.

We can get books on tape or CD, in Daisy format, either audio or print, in specially formatted files for braille displays, and in MP3 format to put on an iPod or one of the small special-made reading devices for hearing blind people. We could even buy a regular print book, and scan it with a flat-bed scanner if we had one, or had the time to do that.

It's only been very recently that we have had truly instant access to books equal with our sighted peers.

A few months ago, I started a series of fiction books. I read about ten in this series before I got to a stopping point. The next book in the series was not available. I searched, I asked friends if they knew where I could get this particular book. I have more than enough books to stop reading this series and wait for the book, and read something else in the meantime. But I wanted this particular book and I wanted it right then! In the old days I wouldn't have had a choice. I'd just have had to wait until someone scanned a copy or until the Library for the Blind got a braille copy. I would have been waiting a while because this book was of a subject matter not of mainstream interest.
Thank goodness for technology! Since nobody had this book, I went to the store, got the book, and read it. It was the first time in my whole life, I've ever been able to do that. The store was the iBookstore run by Apple, and the book was some kind of text file. I used my iPhone and braille display to read it. Because of Apple's commitment across the board to people with disabilities, I was able to do something I've wanted to do since I was six years old.

The book won't find itself on to my annual list of "Top Fifteen Best Reads" for the year. But it will always stand out in my mind as the first book I've ever bought to read just like anybody else. Now that I've had that experience, there is no stopping me!

Happy reading, y'all!

Sense on the Edge-- my review of new products from Hims

Today I met with a rep. from Hims and got a look at the Braille Sense U2 and Braille Edge. I came away really impressed.

The Braille Sense U2 is a traditional notetaker with Perkins-style keyboard. It has 32 cells, a 1GHz mobile CPU and a 32 gb hard disk. It has a small screen on the top of the unit which a DB person could use as part of a face-to-face communication system. The screen can also be disabled if you are so inclined.

The unit comes with the usual suite of applications found on most blindness-specific PDAs. Word processor, planner, file manager, email and internet, database manager and games as well as media such as mp3 player and memo recorder. I obviously didn't check out any of the media functions but I looked at all other programs and they seemed straightforward and easy to use. The unit also comes with GPS and a client for Twitter, Google Talk, and MSN messenger. I really liked that they included a switch to lock the keyboard and braille display when not in use. I can't tell you how many times my Apex has gotten buttons pushed while in my bag.

The unit seems sturdy and well-made. It also has a vibration feature-- great for DB people. You can get alarms, and system alerts as vibrations instead of sound.
The unit has 3 standard A USB ports, an ethernet jack, as well as a VGA port, and SD card slot. It has built-in WIFI and supports USB 3g modems.


The Braille Edge is a new 40 cell braille display with some note-taker functions. While the Braille Sense U2 has synthetic speech output in addition to braille, the Braille Edge does not have any speech and uses only braille.

In addition to its use as a display, this unit has a notepad, alarm, count down timer, stopwatch, calculator, and scheduler functions. This unit does not come with either a screen or built-in vibration.
The Braille Edge can be used as a USB or bluetooth display. It also has a slot for an SD card for storing files.
Over-all, I was very impressed with these products. While I personally don't see myself relying heavily on blindness-specific PDAs due to their smaller size and limited available to run third-party applications, something like the Braille Sense U2 would be great for a person who is not interested in an iDevice, or other off-the-shelf option. I can see both of these products being of great benefit to students, and people first learning braille, or assistive technology.

The products are repaired in Austin, TX. Hims says that repair time is five business days. If the unit cannot be fixed during this time period, Hims will send the user a loaner unit until the repairs are complete.

Random brain dump

Part of my job requires that I do presentations on various topics to groups of people (mostly school children). Today I attended an "Abilities Awareness Day" held at a middle school. My interpreter arrived just shortly after I did. We have known one another for a couple of years now, but rarely get to work together. We spent a while just chatting and catching up which was nice.

Then the presentation started. As did the questions. One young gentleman asked me if I was married. A young lady asked me why I needed a dog if I had an interpreter. I think I'll pass on the guide human, thanks. One young man called Laveau a "statue" because she was holding so still. He was wondering if she ever moved at all. I kind of laughed at that because when she's not working, she never stops moving.

At one point I was demonstrating how I use my iPhone and Braille display for texting and the like. I had the display on my lap, and a teacher held my iPhone. I read the information on my display with my right hand while the left hand sat atop the interpreter's right hand so I could answer people's questions. Yes, it is possible to receive tactile ASL and read braille simultaneously. It kind of breaks my brain though. The ride to the school was one hour each way, so it was a very busy day, and very tiring.

Baylee is getting spayed tomorrow. I am nervous. Bristol is also going in for labs, and this also makes me nervous.
Also I think I'm losing more hearing. I know, who'd have thunk I'd have any more to lose at this point but there you go. I'm going to have to make an appointment with my audiologist soon to see if she can turn up my hearing aid again. Honestly I am putting this off because hearing aid adjustments are one of the auditory things that triggers an increase in vertigo symptoms. I really hate those. I don't care about being deaf but I hate being dizzy and sick. I didn't really even realize how much I've been struggling lately until I used an interpreter today and didn't have to struggle at all.
I always have to struggle to hear, it's just a fact. That makes it hard to notice an increase in the need to work when one is already working hard. But today really brought it home to me how stressful listening has become.

bla, bla, bla!
My brain is so fried right now I'm not making sense. gonna plug in all of my gizmos and go to sleep. We leave for the vets at 8:45 tomorrow with Baylee and Brissy. Good juju/happy thoughts/prayers to the deity/s of your choice are appreciated.

Deaf is not a four-letter word

"You don't look blind!"
"You don't sound deaf."

People tell me those things on a weekly basis. I might be slow on the uptake, but what does "blind" look like? What does "deaf" sound like?

When you think of "deaf" or "blind," what are the images which pop into your mind? The man wearing sunglasses, stumbling along, white cane in hand, trying to find his way along city streets? The woman who doesn't voice, and instead uses an interpreter?
Stumbling? Not as intelligent as "normal" people? Unable to "speak?" Clueless? Dependent? Helpless? Uneducated?

This is how history, and the media defines people who are deaf or blind.

I'm not what you think I am, and because I don't fall into line with stereotypes, I am told that I don't look or sound the way someone thinks I should.

Blindness is a spectrum term. Deafness is a spectrum term as well. There are many faces of deafness and blindness, not to mention deafblindness. We are not just one type of person with many faces. We are a cross-section of society just like "normal" people. I walk confidently, and look at people when I speak to them. Unless people see my dog or my braille book or display, you would think I were sighted. I voice for myself because I'm post-lingually deafened. I don't have any kind of "speech impediment," because I'm post-lingually deafened. I'm not ignorant, nor am I any more special than the next person. Unless you see me signing, or talk to me over the phone via relay, you would never know I am deaf.

Because I don't conform to people's standards of what they think blindness, or deafness should be, some people seem to be afraid to use the terms "deaf" and "blind." This is especially true of the word "deaf."
"She's d-d-d-... d-d-d ... ... hearing challenged." This was spoken by someone who knows me quite well. Someone who interacts with me extensively every day. Why is it so hard for her, and for others to say it? DEAF! I'm deaf. If you look at my audiogram, I have a 105 decibel loss in my "good" ear, and a 135 decibel loss in the ear that is there strictly for decoration. That's pretty darned deaf. I wear a hearing aid because I have to, in order to work where I do. I don't wear it at home, or when I'm relaxing. I self-identify as deaf, and have always thought of myself this way. So why is it so hard for others to say the D-word? I think it's because I don't comply with the stereotype of deafness, whatever that is.
I am involved in the Deafblind community. I use American Sign Language, both at work and with friends. I self-identify as culturally Deafblind. If there was a "cure" for my deafness, or my blindness, I wouldn't take it because I am who I am, and I like myself this way.

I've asked people why they continue to stumble around, searching for terms to describe my hearing loss when a readily available one is at hand? A word which i, myself use? It certainly isn't in order to save my feelings, because if the word deaf bothered me, I wouldn't use it when referring to myself. The most common answer I get is this:
"I don't want people to get the wrong idea about you."
And what idea would that be? That I can't hear? Because I can't hear. That is the simple truth, right there; I can't hear. Or is it really because I don't fall into line with our society's pre-conceived notion of what "deaf" is. If other people are discomfited by my word choices, then they should get over it, because I am not changing. Since it is me I am talking about, I have the right to identify myself in the way most appropriate. And that is deaf. People are going to just have to swallow their resistance and say it; because I will keep correcting them, and I will continue calling them out on it.
I am not impaired, or challenged. I am deaf. I voice, I use ASL, I read braille. I have several methods of communication at my disposal, and I will use whichever meets my needs for that moment. I am not helpless, nor lacking in intellect. I have a work and social life, made up of friends and coworkers, deaf and hearing, blind and sighted. I am a wife, a teacher, a dog trainer, a herbalist. I love dirty limericks, ASL poetry, and long books. I am fond of dark chocolate and cold tea. And I am Deafblind.

Independent Living Without Sight and Hearing

Yesterday I read a book called "Independent Living Without Sight and Hearing." It was written by Richard Kinney and was published in the 1970's. While reading this book, it really hit me how much technology has really changed the lives of deafblind people within the last thirty years.

In Mr. Kinney's day, there was no way for a person who was blind as well as deaf to use the phone. You couldn't access a TTY for sighted deaf if your couldn't read print. In his book he mentions a couple of devices for using the phone with someone who knew Morse Code. These devices were called the Tactaphone and the Sensicall. They were attached to a phone and the hearing caller could tap out messages in Morse Code which were felt as vibrations by the deafblind person on the other end. If the deafblind person could voice they could speak back. Reading about the lengths a person who was deafblind went through just to place a simple phone call, made me so thankful for my iPhone and braille display.

In the book he also mentioned that the
<"National Library Service for the Blind and Physically Handicapped">
had 10,000 braille books available for loan.
10,000 books sounds like a lot... at first... But if you really think about it, and compare it to what sighted/hearing people have, it is only a drop in the bucket. If you had special interests, such as growing carnivorous plants, you were basically out of luck. If you were Christian, there were several charities which would provide you with religious material in braille. There is even a Jewish Braille Institute which provided materials, however if you were another religion, you couldn't get any material easily available in braille.

Today we have
<"Bookshare">
which has, at last estimate, over 125,000 books. The content is largely user driven, so if you are interested in a particular title, or area of interest, you can scan books for the collection, or have a friend do it for you. There are books on almost every topic you can think of. There are sacred texts from many different religions from around the world. There are fiction books, cook books, self-help books, and text books for school. If you have a braille display and a computer or smartphone, or a note-taking device specially designed for the blind and deafblind, you can read. What's more, you can keep the books you like. Braille is three times the size of print. As an example, the first book in the Harry Potter series takes up four volumes in hardcopy braille. I think the book is somewhere in the range of 300 pages.

If I kept every book I loved and wanted to reread or own in hardcopy braille, I would need entire building devoted to housing my book collection. While something like this sounds like the closest thing to heaven on earth, to a bibliophile like myself, it is not financially feasible at this time.

Thanks to technology, I can keep copies of books on a jump drive to be read later. I can keep reference books, and cook books. My braille display weighs 2 pounds whether its hard drive is full of books or not.
Mr. Kinney's book also goes into great detail about the communication methods used by deafblind people during this time period. Although most DB people were using
<"The Rochester Method">
Which was made most famous by Helen Keller and her teacher Annie Sullivan. It is the one-handed American Manual Alphabet-- the same one used today. This book does not discuss the use of ASL or other signed languages at all.

It does discuss the use of morse code and the British Two-Handed Manual Alphabet. This Alphabet is still in use today around the world, by deafblind people from Canada to Scotland. The books gives very detailed descriptions of all three types of communication. I have always wanted to learn the British Two-Handed Manual Alphabet so that I may more easily chat with DB people from other parts of the world. I already know the One-Handed Manual Alphabet but I don't know Morse code and I think it might be interesting to learn so I have it in my "communication tool box."
Although much of the information is out-dated, this book was still a fascinating read. It really brought home to me how blessed I am to be a DB person living in this current time. I have access to information at my fingertips and on demand. I can call a taxi, read a recipe for curry chicken, or place an order for new shoes by myself. I have frequently heard some people say that technology cuts people off from one another. This may be true to some extent. However for a deafblind person, I believe the opposite is true.

The Three Things

I've been thinking back over my life, and how I have become the person I am today. What things have influenced my life the most? What were the choices I've made which improved my life and overall well-being? And I came up with three things that I think have made me who I am today and which have changed the way I see myself, and the way others see, and interact with me, and how I look at the world. I can't put them in order of importance because to me, it is my independence and my life rests on these three things equally. So in no particular order...
1. Partnering with an assistance dog.
When my only disability was blindness, having a guide dog was nice, and it made traveling easier and much more pleasant, but it wasn't a necessity. Now that I'm deaf and blind, and have a balance and vestibular disorder, my dog is literally my independence. She guides me around obstacles, retrieves items I drop, leads me out of buildings when the fire alarm is activated, gets my medications when I literally can't move from vertigo. She stands between me and moving vehicles. She helps me up when I fall, and lets me know when to wake up in the morning. She is my eyes, ears, hands and vestibular system. It would be extremely difficult to be without her.

2. Learning Braille.
It may surprise you to learn how few blind people learn or use braille. I didn't until I was an older adult and started having trouble with my hearing. Today I use braille for everything. To interact with my computer, and my cell phone. I can read books, keep informed about the news, look up phone numbers, make relay calls, use a GPS, read and respond to emails, and label the poisons herbs in my herb cupboard. I am able to interact with the written word in a hands-on way. Because of the marvels of modern technology, I am able to do use a computer and a phone because I can read braille. Computers and smart phones open up so many doors to people, and level the information playing-field.

3. Learning American Sign Language.
When A blind person loses their hearing, it is so catastrophic. For so long I was isolated. I lived in uncertainty and outright fear. It wasn't even the social aspects which had me so upset, but how could I go to doctors, manage my own shopping, or go to meetings at work if I couldn't hear or see? I qualify for a cochlear implant, but for many reasons it is not an option I'll take. I didn't want to be "fixed." I wanted to be independent. And yes, I wanted to have a social life. I will be forever grateful to the strong Deaf and Deafblind role-models in my life. I am thankful for their patience, for taking me to Deaf and Deafblind events, for helping me, for encouraging me. I am thankful for a fantastic teacher who manages to challenge me while making me laugh. I am thankful to all of the SSPs I've ever had, both in New Orleans and at Deafblind conferences and camps around the country. I am thankful for the gift of language which allows me to make independent medical decisions, to have informed choice when I shop, and which allows me to participate in company meetings and training sessions on an equal footing with my hearing coworkers.
I can honestly say, without those three things I'd be a totally different person than I am today. And with all of that navel gazing out of the way, I think I'll go read a book with my dog!

Tech? No!

I wanted to blog a bit about technology, and describe what kinds of technology are out there for Deafblind People.

The word Deafblindness is a broad term. It can mean someone who is hard of hearing, with low vision to a person who is profoundly deaf and totally blind. most deafblind people have a bit of sight, or a bit of hearing, or a bit of both. I, for example have a small bit of sight, but not enough to use for reading print, or signed conversations. I use braille and ASL tactually. I can also hear a bit but can only hear speech in quiet settings. If I am going to listen to audio long term, I plug a device called a streamer into my computer or iPod, and it links it directly with my hearing aid-- eliminating background noise and cranking up the volume. Since there are so many different combinations of "deafblindness" what works for one won't work for all.

I use a Macbook with a braille display. The display runs off of USB, and is "twenty cells" long which means that it displays twenty characters or spaces at a time. There is a program called Voice over which will either speak what is on the screen, or will translate it into braille to be read on my display.

I also use an iPhone with a braille display. I learned to operate the iPhone using the touch screen and various gestures. The iPhone has opened up new worlds for me. Until I got an iPhone, I couldn't make phone-calls independently when away from my computer. I use relay to make calls. I use AOL Instant messenger to connect with relay operators who call the number I want. They type in what the other party is saying. I read the conversation on my screen, and type back my answer. The relay operator then reads my answer back to the hearing person. It is a newer version of the TTY. But I could only use this on my computer. Until I got an iPhone and downloaded an application for AOL Instant Messenger and could now make phone calls to anyone, from anywhere.

This meant that I could call a cab for myself, when out doing the shopping. It meant that I could call the pharmacy to get refills for my meds while I was on the buss. It meant real independence. The iPhone has many other apps. I can identify money, the color of a shirt, the label on a can, and get hurricane warnings all on my iPhone. I can also do texting, which opens up a huge new world of communication possibilities for friends and family. I can also use GPS.

On Friday I took a buss from my office to the grocery store, I got on, paid my money, and opened up my iPhone and braille display. I started my GPS app, and it began naming the streets we were crossing, as well as the street addresses. I had told the driver where I was going when I got on, and also that I was deafblind and could she tap my leg when we got to my stop? But by watching the addresses move by on my braille display, I could know if we were coming close to my stop, could remind the driver about my stop, and could know when we arrived. This is more information about the environment than most deafblind people have ever had.

I also use a Braille Note. It is a small device-- about the size of a net book-- and is akin to a PDA. I can do things like compose documents, keep an address book, and read trashy romance novels, all on my Braille Note. This unit can also act as a braille display for my iPhone-- using bluetooth, it will reflect what is on my iPhone's screen or the screen of my Mac, when requested to do so. I also use my Braille Note to facilitate face-to-face communication. When going to a store, or an office, I can ask the person with whom I wish to communicate to type their message on my Braille Note's QWERTY keyboard. The message then appears in braille. The unit also has a USB port for a keyboard for use to caption meetings when I can't get an interpreter. The Braille Note can also go on the internet but I don't use this feature much because I find the speeds faster using my iPhone. I can read books from
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on there. Bookshare's collection is growing every day, and I can read books on almost any topic using my Braille Note.

There are also programs designed for computers and cell phones, for people who have low vision which make the font larger and the colors contrasting for easier reading. All of the programs I described have speech, so if a person has remaining hearing, they can use that. Whether you prefer Mac, Windows, or Linux, you use a braille display or large print, there is a computer out there which can meet the needs of almost everyone.

Since the iPhone is gaining in use amongst the deafblind population, I would like to start a series of blog entries about apps which are usable by, and helpful for, deafblind people. I will start out with my personal favorites, but would love to hear from any DBP out there who have a particular favorite app!

Deafblind Awareness Week

This week is Deafblind Awareness week. But for me, and for the many people I meet every day, it is always Deafblind Awareness week/day/moment. I sometimes feel like my life is a lesson in awareness.

It has its good sides. I would hope to think that when people see me in public, doing regular things like shopping or having coffee that they will one day, just think of me as a regular person who happens to be unable to hear or see. Everyone has things that they cannot do, some are more obvious than others. I would hope, through mine, and others actions that we can show that people who are Deafblind can work, go to school, have families, and all of that.

But sometimes, sometimes I just want to be unremarkable. I wish people weren't so "aware." Of my braille, my dog, my ASL, my difference. I sometimes wish that I could spend time in public without some curious person asking me questions, invading my space, or making stupid inane remarks like "I think sign language is so beautiful! I love watching people sign."

I know they mean well. I know that when people think of Deafblindness, they think of Helen Keller and Annie Sullivan, and how does their life-- lived almost one hundred years ago-- fit into our world today? People want to know things. How do I cook, or schedule doctor's appointments, or cross roads. They want to watch me texting or reading braille, or chatting with friends in ASL, not because they are mean, but because it is new and different and "interesting." In this day and age, our society thinks that they have the right to learn and know anything about anybody. Look at all of those reality television shows, the blogs and the twenty-four-hour news coverage. We are a nosey society who believe that we have the right to ask-- to know-- and that privacy is not meant for those who have lives which are different from the norm.

I try, in my personal life, in my work, and in my community efforts, to educate, to advocate, and to continue to grow as a person. But sometimes being aware of deafblindness means being aware that your attention, your questions, your comments, aren't always welcome. If a person wants to know how a Deafblind individual crosses a road, they can look it up on Google. Which isn't nearly as interesting as asking me directly and watching my conversation partner interpret their words into my hands. But if it's truly information being sought, there are a wealth of resources out there. There are even Youtube videos of tactile ASL. Use these resources and educate yourself if you are so inclined.

I don't mean to come off as a grouchy curmudgeon. But if I could make people "aware" of just one thing, it is that I'm a regular person, just like someone who is sighted or hearing. That I'm out in the big world, trying to live my life as best as I can, and that I'm not some kind of carnival freak show exhibit to be stared at, or remarked upon. Be aware, use consideration, think!