The Deafblind Journey

June is Deafblind Awareness Month, and this week is Deafblind Awareness Week. Today is also the birthday of
<"Helen Keller">

Even when I was blind and hearing, I've always had an interest in Helen Keller, and her life.

We all know that she was truly a pioneer of her time. But rarely, do we stop to think about what her time was like. Things were different, then. Attitudes about disability were radically different, and Helen Keller never had the opportunities that we-- as Deafblind people have today. She is often portrayed as an amazing woman, an angelic figure-- admired for her strength of will, and ever-hungering mind. But how did Helen Keller feel about her own situation? How did she feel about her own deafblindness.

In 1906, Helen Keller asked the author Mark Twain to give a speech at the association of promoting the interests of the blind. She was unable to preside herself, and sent her good friend to speak to them. She also sent him with a letter to read at the meeting. It gives us a very clear look into her feelings about blindness.
"To know what the blind man needs, you who can see must imagine what it would be not to see, and you can imagine it more vividly if you remember that before your journey's end you may have to go the dark way yourself. Try to realize what blindness means to those whose joyous activity is stricken to inaction. It is to live long, long days, and life is made up of days. It is to live immured, baffled, impotent, all God's world shut out. It is to sit helpless, defrauded, while your spirit strains and tugs at its fetters, and your shoulders ache for the burden they are denied, the rightful burden of labor. The seeing man goes about his business confident and self-dependent. He does his share of the work of the world in mine, in quarry, in factory, in counting room, asking of others no boon, save the opportunity to do a man's part and to receive the laborer's guerdon. In an instant accident blinds him. The day is blotted out. Night envelops all the visible world. The feet which once bore him to his task with firm and confident stride stumble and halt and fear the forward step. He is forced to a new habit of idleness, which like a canker consumes the mind and destroys its beautiful faculties. Memory confronts him with his lighted past. Amid the tangible ruins of his life as it promised to be he gropes his pitiful way. You have met him on your busy thoroughfares with faltering feet and outstretched hands, patiently "dredging" the universal dark, holding out for sale his petty wares, or his cap for your pennies; and this was a man with ambitions and capabilities."

When I read this for the first time, my heart broke. I can't imagine how a person could carry on, believing such things about themselves. But it is because she did carry on that deafblind people have the lives we do today.

We can work, we are enjoying life, we travel proudly with confidence. I myself have work which is wonderful and satisfying. I have encouraging friends and family, and meaningful social activities. I have the ability to travel independently, where ever, and when ever I wish-- only limited by finances and time, and responsibility. And the fact that my travel can, at times, be curtailed because of my responsibilities is indeed a blessing. People rely on me, they need me to do various things. I am important, and as much as traveling is a pleasure and a blessing, returning home is an even bigger one.

In the beginning of her letter, Helen Keller states:
"It is a great disappointment to me not to be with you and the other friends who have joined their strength to uplift the blind. The meeting in New York will be the greatest occasion in the movement which has so long engaged my heart: and I regret keenly not to be present and feel the inspiration of living contact with such an assembly of wit, wisdom and philanthropy. I shall be happy if I could have spelled into my hand the words as they fall from your lips, and receive, even as it is uttered, the eloquence of our Newest Ambassador to the blind. We have not had such advocates before. My disappointment is softened by the thought that never at any meeting was the right word so sure to be spoken. But, superfluous as all other appeals must seem after you and Mr. Choate have spoken, nevertheless, as I am a woman, I cannot be silent, and I ask you to read this letter, knowing that it will be lifted to eloquence by your kindly voice.."
These things are now possible. Through the use of relay Services, Captioning, and Transcripts, as well as VRS, SSP's and Interpreters, we are far more able to be a part of our own world. I have instant access to books, to information, to things which never have been even dreamed back in Miss Keller's day.

I have never been ashamed to be Deafblind. I have had the blessing of a loving family, with high standards, good and patient teachers, fabulous role-models, and supportive friends. If I want to do something badly enough-- I will do it, and nothing can stop me.


At the closing of her letter, she says:
"It is because we know that these ambitions and capabilities can be fulfilled that we are working to improve the condition of the adult blind. You cannot bring back the light of the vacant eyes; but you can give a helping hand to the sightless along their dark pilgrimage. You can teach them new skill. For work they once did with the aid of their eyes you can substitute work that they can do with their hands. They ask only opportunity, and opportunity is a torch in the darkness. They crave no charity, no pension, but the satisfaction that comes from lucrative toil, and this satisfaction is the right of every human being."

It is because of people like Helen Keller that we have the freedoms and opportunities we do today. My most profound thanks go out to Ms. Keller, and every other person who has worked to make a better tomorrow. It is now, our responsibility as people who are deafblind, to continue the fight for improvement. If we are hoping to go forward, we must fight, every day. It means writing to Congress Men and Women, it means going to meetings and letting your voice be herd. It means teaching and it is about learning. Most of all, it is about never accepting second best-- standing up,being proud, and knowing that we are making a better future.

Deafblind Awareness week: Fun with Pronouns and other randomness

Many people who have never spoken to a deafblind person through the use of relay service or an interpreter may feel rather flustered when they have a conversation ith someone who is deafblind. They want to have a conversation, but it seems intimidating and they are afraid of saying the wrong thing. This is actually a simple process and if you keep these simple rules in mind, you should do fine.
The first thing to remember is that the interpreter or relay communications operator is there for one purpose-- to facilitate communication for a person who is deaf blind. Just pretend they aren't there. This means using the correct pronouns. If you say "Does she want a morning or afternoon appointment?" the operator or interpreter will say exactly that, and I will look at you funny. Talk directly to the deafblind person, just like you would anybody else. "Do you want a morning, or afternoon appointment?"

Talk at a normal speed, at normal volume. The communication facilitator will tell you if they need you to slow down, or speak louder. Look at the deafblind person when you talk to them. Understand that there may be a slight delay while the message is being relayed.

Understand that the interpreter or relay operator will relay *everything*. This means, if you get a phone call from a person who is deafblind, and you turn to your coworker and say: "It's one of those stupid deaf people, can you take this call? I hate this sh*t." This conversation will be relayed to the deafblind person and you will look like a rude jackass. Same thing with an interpreter. If you whisper behind your hands and point at me, I will know about it. If you try to sneak pets of my service dog, when I have asked you to ignore her, I will know about that, too. If you sound pissed off that you have to talk to me, the communication facilitator will tell me. Treat me just like you would a sighted/hearing person. Maybe you are just consistently rude to everyone, but that has not been my experience. People say things about me, or too me, that they would never say if I were hearing. They make gestures at me, or try to do things that they'd never do if I could see. Then when I call them on it, they feel really stupid, angry and embarrassed.

If you are a business owner, you are required by law to take relay calls. There is no excuse valid enough to exempt you from the law. People have gone to court and have won against businesses who will not take relay calls. If you are a business owner, train your employees to be educated about this. Ignorance of the law is no excuse.

If a deafblind person is using an interpreter, everything the interpreter hears while working is privileged and will be kept confidential. Even if you are a family member or spouse of a person who is deafblind, the interpreter cannot share information with you about their client.

Ever since I started using the various kinds of communication facilitators, I have had some very interesting experiences. If I want to call and order a pizza, a task which takes hearing people two minutes takes me ten minutes-- if I'm super lucky. Sometimes it won't happen at all. I'm surprised at the number of people who will just stair at me in public if I use ASL. Many people have no compunction about telling me they are staring. My favorite was a lady, who was taking an ASL class. She was watching my conversation as some kind of self-test. Then she had to come up to me and tell me that she understood all of our conversation. And she acted like I should be proud of her. I said: "So... You get an A in eavesdropping on conversations which don't involve you, then?" The woman was mortified, and tried to make all kinds of excuses. I do admit to feeling a juvenile glee in her discomfort.


If you have stuck with me through this long entry, you deserve a cookie!

Deafblind Awareness Week: Communication, baby!

June is National Deafblind Awareness Month. I had all of these plans about different things I could do in my blog to bring attention to Deafblindness and ASL.
And then life happened and I have been busy. But I'm trying.

Thursday I'm attending the 4th annual
<"Helen Keller Deafblind Awareness Day">

We are doing a tour of where I work, and then having a lunch and going to the French Quarter.

People may be thinking how something like this works-- a huge gathering of Deafblind people, who by nature of their condition must only have communication with one person at a time.

So the way this works is that ideally, each Deafblind person would have an SSP or interpreter or two. Two is the best so they can switch out and take breaks. These interpreters or SSPs do several things. They interpret the speaker's words. Even if the speaker, themselves is Deaf or Deafblind, and using ASL, we can't see it, so we need an interpreter to interpret what is being signed. People use ASL tactually, where we actually touch the hands of our interpreters. This is some of the most exhausting work for an interpreter. They usually have a partner so they can give each other breaks. It is just as exhausting for the Deafblind person, because there is only one of us. I am using muscles I didn't even know I had until I became Deaf!
Some deafblind people are hard of hearing and can use speech for communication. They might use a Cochlear implant or hearing aid paired with a sound loop or an FM system, to wirelessly hear the words. If the person who is presenting is voicing for themselves, they will talk into a microphone so everyone can hear, but if the presenter is Deaf using ASL, the person who is hard of hearing will have the words interpreted back into English and spoken into the microphone of their FM System.
Some Deafblind people can see well enough to read ASL visually. Their interpreters use close space signing, where they sign in a smaller area and may need certain lighting accommodations so that the Deafblind person can best make use of their remaining sight. Tracking is where a Deafblind person places their hands atop the signer's wrists. It's kind of like the bridge between close space signing and tactual signing.

Then again, some Deafblind people can see well enough to see the platform interpreter on the stage. It is also there for the people who are Deaf and sighted. So there are a lot of people, requiring all kind of communication styles. It is always so neat to see how it all works. The SSPs also help with things like getting the plates for people, orienting a person to their food on the plate, interpreting any spoken conversation at the table.

Usually when I go to events like this, everyone at the lunch table says who they are, where from, and if they are Deafblind, Hearing/interpreter, SSP, Deaf, or blind and hearing, etc.

I really like eating lunch with Deafblind people because I don't feel like eating is this huge stressful thing to accomplish before I have to stop so I can participate with hearing people.

After the lunch, we are all going to the French Quarter. I love playing tourist there! It is so much fun. I hope I can get lots of pictures taken.
I will try and post something about Deafblindness every few days. If you have any questions, nows the time to ask 'em. I don't want to write about things that people have heard before.

Misadventures in the Red Stick

On Thursday I needed to travel to Baton Rouge for a meeting. This requires four buses and then a ride to the meeting place once I arrived in BR. The first bus picked me up at my house around 9 am. I was dropped off at the public library where I waited to take the bus to Baton Rouge.

I read email and texted. A Deaf friend of mine saw me waiting and came over to chat. Apparently the supervisor for the bus had been trying to talk to me and didn't know I was deaf so my friend's friend who was hearing came over and through a series of he said/she said/he said kind of translations, the supervisor told me that the bus was coming at 10:50. I would have gotten out my gizmo for face-to-face communications but I didn't know someone was trying to talk to me.

I got on the bus and amused myself for the two-hour long ride. Eventually I ended up at the station in Baton Rouge and walked around until I could find someone to show me to the rest room.

When I got out, my ride was there to take me to the building where the meeting was. We arrived and I met my interpreters. The meeting was three hours long, and after about two hours my arms were hurting and I needed a little break. I was a bit embarrassed to ask for one but I did anyway. Everyone got up to take a break and I asked my interpreters to show me where the bathroom was.

I should probably back up and say that interpreting for deafblind people is different than for sighted deaf. With deafblind interpreting, there is a lot more describing of the environment that goes on in addition to just straight interpreting. For example, before a meeting starts, an interpreter for a deafblind person describes the room, how it is laid out, who is doing what, any identifying characteristics of people. There were a couple wheelchair users at this particular meeting so my interpreters told me about that. This way I'd have a better idea that those people would be taking up space differently than a person who doesn't use a wheelchair.

So I had my SSP guide me to the restroom. We reach the door, and I step inside and turn around to ask my interpreter to explain to me how the restroom was laid out; e.g. where was the toilet, soap dispenser, paper towels and sink. Obviously, a bathroom is not the kind of place you want to explore tactually! Ewww! Only when I turned around to ask, my interpreter wasn't there. I stepped back out of the bathroom, and asked someone to explain the bathroom lay-out to me, but the person wasn't my interpreter. However, she did kindly fetch my interpreter who explained where everything was. I joked about getting lost and never coming out again.

Eventually!!! PAH!!! The meeting was over, back to the bus station, only this time the transfer to the bus didn't go smoothly. The bus driver demanded "an identification card for the dog." However under federal law, a business owner or employee may not demand such identification as a condition of access. The person may ask if I am a person with a disability, if my dog is a service dog, and what tasks my dog does to mitigate my disability/s. This driver did not ask those questions, however. He kept insisting on identification. I told him that I'd call the police and press charges. Denial of access to a person with a disability accompanied by an assistance dog is a class-C misdemeanor in the state of Louisiana which is punishable by a fine and/or jail time. The bus driver yelled, and told me that it was his bus and he didn't have to obey the law because his only rules were that of the bus company. I asked if he'd care to place a wager on that. He yelled some more and told me that people would be afraid of my dog (who was being very threatening and fear-inducing by standing next to me calmly doing counterbalance work while I held her handle) The driver then called his supervisor. To his surprise, the supervisor made him let me on the bus.

The driver then told me that if anyone was afraid of my dog that he would park the bus and refuse to move and that I would make everyone late and that he would announce to the bus at large that we were not moving because I refused to remove my dog from the bus and that the dog was causing fear amongst the other passengers.

Too bad for him, nobody was afraid of the dog and she lay under my seat while I read email and blogs for the ride home. Once again I was dropped off at my public library and waited for the last bus of the day to take me home. It was over an hour late, and it was ten p.m. when I finally walked through the front door. I was gone again the next day by seven-thirty am.

I'm glad I don't have meetings like this often!

This and That

Everyone in my office seems to have the winter crud, so it's no surprise that I got it. It has hung on for over a week and I am wishing it would just go away. In other news, I'm changing up the equipment I use for Laveau. She managed to break her guide handle for the harness, so Mister Pawpower is spending the day today making me a new one since I have to attend a board meeting in Baton Rouge tomorrow and need my harness. He is also going to add a light mobility handle on her back strap. As my inner ear disease progresses, I am finding myself in need of more and more Mobility tasks from Laveau. Due to my lack of proprioception, I have a hard time telling where I am in space. Having a handle to hold when I'm standing for long periods helps me. I have also taught her to counter balance for those times when I think I'm standing straight but am really canted far to one side or another about to do a face plant. We will put that handle on my harness sometime this weekend. I am super excited.

Tomorrow I'll be gone for twelve hours as I am traveling to Baton Rouge. This takes two bus rides and a cab ride each way, and then a three-hour meeting which means three hours of solid tactile interpreting. My arms hurt just thinking about it.
Baylee is filling out and continues to have boundless energy. We have a nice man walking her several times a week. Well actually it's more like jogging; but it really helps make her energy levels more manageable.

Bristol and Mill'E are doing well. Today when we were about to leave, Mill'E-Max grabbed one of the straps on Baylee's "in training" backpack and took off with Baylee running behind her. That dog just wants to be in charge, I guess.

I hope everyone in blogland has been well!

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.

take my hand, or maybe not!

Friday was my birthday, and since I've been under a bit of stress lately, I decided to party it up and have some fun. We started out at a rotisserie place called Zea. I had some pesto-crusted trout and two Mojitos, which are my new favorite drink. After that, some friends and I went to a party at a lawyer's house. I don't know this person but my friend goes to law school and was invited.

So we get there, and I have some rum and coke. I was chatting with a lady I know who works at the Advocacy Center, and then turned around to chat with my friend. I put my hand atop hers and tapped it, which means that I wanted her attention. She just laid her hand there and didn't give me any response, so I thought she must be talking to a hearing person. So I just laid my hand atop hers and sat there and waited. ... and waited, and waited, and waited. Then I tapped her hand again this time she wiggled it back and forth, in that universal gesture hearing people do when they want to talk to me but don't know how. I didn't know what she was doing. Suddenly, my friend tapped me on the shoulder and said that she had quick left and gotten another drink but didn't tell me because I was talking to someone else. So Another person had taken my friend's place-- one that didn't know us. Lol! I had been touching a stranger. Her hands were the same type and shape as my friends, and I didn't notice! Talk about embarrassing! Gotta love those Deafblind moments!

I AM! the Inspiration! Baby!

This post is for the November edition of the <"Disability Blog Carnival">

I sit with my ASL teacher in a coffee shop. Today's lesson is about drugs, alcohol, and swear words.
My teacher begins, and I rest my hands atop hers. With her right hand she spells out "cocaine" and then makes the sign. I repeat it back to her. My teacher pauses, and then tells me that someone has walked up to our table. My teacher then begins interpreting this lady's words. "I saw you sitting over here and I wanted to come and tell you how inspirational you are. I think it is so amazing that even though you are both deaf and blind, you can come here all by yourself, and get coffee all by yourself. It's wonderful that you have special friends who can talk to you. I love watching you, and I think you are so inspirational." Before I can begin to compose something sufficiently snarky, she walks away. My teacher laughs, I laugh, and we joke about cocaine being inspirational. Then she jokingly says that the ASL sign for "inspirational" should be my new name sign, because I AM! the inspiration, baby.


I am in the mall with my SSP, and we are waiting at the Apple Store for the Geniuses to fix my Mac. We are deep into a discussion of dog poop, when a young woman comes up to us and says: "I think sign language is so beautiful. I just love watching you guys signing to each other. That is so special, and wonderful. Tell her that she's inspirational." The young woman leaves, and we roll our eyes and make my new inspirational name sign, which has become a joke amongst all of my friends.

I have a staff meeting for work. The room we are using is full because another meeting was taking place in there and had run late. My interpreters arrive, and we sit down in the lobby and begin chatting while we wait for the room to empty. I am telling a funny story about a misadventure I'd had earlier in the week, and then I leave to check to see if the meeting room had emptied. a client of my agency says: "Wow, is she deaf or deaf and blind?" My interpreter tells her that I'm Deafblind. The lady's eyes widen and she says: "Wow! and you have the biggest smile on your face when you talk to her. That is so amazing, I'll bet it's like talking to an angel from heaven." My interpreter tries not to laugh, and replies that no, she is smiling because I was telling her a funny story. The client then tells my interpreter that it is such a blessing that she can still laugh even though she is deaf and blind, and that I am an inspiration. Upon my return, my interpreter repeats this entire conversation back to me, and we roll our eyes and make the sign.

Whenever my friends or family tell embarrassing stories about me, or tease me, or play practical jokes on me, I remind them that I am an angel from heaven, and an inspiration and that they'd best give me the proper reverence or I may stick a whoopee cushion under their chair the next time we're at a restaurant. Don't mess with me! I AM! the INSPIRATION, baby! And don't you forget it!

The Pawsuit of Happiness

Today we went to a festival, which is hardly newsworthy, seeing how New Orleans seems to be the festival capitol of the world. This was a festival which was different than most; it was for pets. They had different booths and activities. It was me, Laveau, Mister Pawpower, Baylee, and my SSP.

We arrived and my SSP laughed because as we were entering the festival grounds, Laveau had to walk by a large lake. The path was right next to the lake and at one point, she took me near the edge so she could stare with great longing at the water. I am blind, and can't read her facial expression, but even I could feel her mental wheels turning. She loves to swim. But this was not on our schedule for today. After she gazed her fill upon the forbidden water, we entered the festival area.

My SSP started describing to me all of the booths set up by different vendors. We stopped at a booth selling collars and got Baylee a new collar with "Who Dat!" written on it. The collar is black and gold which matches Baylee's coloring really well. She was also growing out of her puppy collar, which was pink and Mister Pawpower needed a more manly collar for his dog. Then we stopped by a booth set up by a local pet shop, and I bought Laveau a hard rubber ball which looks to have great bouncing potential. This should make Laveau quite happy as chasing the ball is tied with swimming for her favorite activity. We passed a bunch of other booths, and saw loads of dogs.

There was a giant bucket of water out for the dogs to drink. I let Laveau have some, but she surprised me by hopping into the bucket with all four legs and swishing around in it. Guess she was getting even with me for not letting her swim in the lake. Once I was able to stop laughing and talk, I told her to get out of the bucket, which she did, reluctantly.
We met a family who had an English Mastiff. That dog was HUGE! He weighed 220 lbs, and his owner said that he ate 45 lbs of food every week. You know you are a dog owner when your mind immediately runs to the amount of poop that dog must deliver to his humans every day. It's like having a horse, only one that sleeps in bed with you! We also met a little girl who was around 5 or so. She was learning some signs and wanted to talk to me, so was showing me all of her ASL. It was so cute, and she had such tiny hands.

We went to a kissing booth run by Boxer Rescue. They were doing the booth to raise money to help pay the vet bills for sick Boxers.. The dog they had today was so cute. She was brown and gave sweet little kisses. The kissing booth was kind of a table thing. The dog was at like chest height on me, and would give kisses. Well she saw Laveau who was being very good at keeping "four on the floor" but who really wanted her own Boxer kisses. So the Boxer leaned down, and Laveau leaned up, and it was like a scene from Romeo and Juliet when their noses finally touched.

We walked and walked and walked some more. Laveau flirted with some more dogs and eventually we ended up getting some lemonade because it was hot. I got water mellon lemonade which was very good. We finally left the festival around 3:30. both Baylee and Laveau are exhausted.
I think Mister Pawpower is cooking French Toast for dinner, with sausage and syrup. I am getting hungry, so shall go prod him in the general direction of the kitchen.

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.

Rocket Rox!

Laveau and I made it to Massachusetts without incident. On Saturday morning, we went to a garlic festival held in Vermont. It was really neat. There were many different tables set up and you could try all kinds of different things with garlic in them. We had garlic cheeses and dips, garlic mustard and pesto, salsas, and infused oils. I ended up buying a few things to bring home. We also got an order of fried garlic cloves and fried pickles to share. It was a lot of fun.

Yesterday we stayed around home in the morning, but in the afternoon we drove to Saratoga Springs, New York with our friend Lynn. We went to an Irish pub for dinner and I had some lovely Irish cider with my dinner. After we had eaten, we went to the Saratoga Performing Arts Center to see Elton John in concert.

I would like to publicly thank John Huff and Kevin Appler of the Saratoga Performing Arts Center and Live Nation tours for finding me two very skilled tactile ASL interpreters for the show. The entire staff at the SPAC were very professional and courteous, and they helped make this evening an unforgettable time for me.

We were supposed to sit on the lawn, but we were moved to an area directly in front of the stage so we could be close to the interpreters. My two interpreters were really great and we spent time chatting before the show.

The opening act were cellos, and apparently they played popular music by Michael Jackson and Guns and Roses. My friends said it was quite odd.

Elton then came on and he was wearing a suit with roses embroidered on the sleeves and across the back. The pinstripes on his pants were diamonds.

He had a full band and a chorus. I couldn't really hear much at all. His piano was a full grand, and I could feel it in my chest when he played it. My interpreters were great at describing his playing. At one point he was sitting on his piano and playing it, another time he sat on the bench like you'd sit a horse.

He played many old favorites-- Daniel, Benny and the Jets, and Your song to name a few. My favorite by far was Rocket Man. We all stood up and were dancing. My interpreter had her hands up over our heads for the rockets and we were basically doing an ASL dance. The energy in the room at that moment was really amazing. He also played Crocodile Rock and that is very fun in ASL.

Elton walked through the audience shaking hands and making autographs. My interpreter got his autograph for me which is so exciting! It is my first ever autograph.

Laveau and my friend's dog, Yancy, both did really well. Laveau laid with my friends Lynn and Nancy because it was more out of the way. I had to sit facing my interpreters and there was not a place for her where she wasn't in the way, so I sent her back to lay with them and she did fine.

Before the concert started, we got a great deal of rain, complete with thunder and lightning. I was glad we weren't sitting on the lawn, let me tell you! The drive home was quiet; we stopped for caffeine and doughnuts and for the first time ever, Laveau slept in the car she was so tired.

We got home around two in the morning and I went right to bed and slept until eleven. I am still tired believe it or not! Tonight my friend's husband is making his special lamb recipe. It is my favorite ever lamb dish, and I am looking forward to it. Her husband is a very skilled cook and we have had everything from blackberry pancakes to hot wings.

Today we are going to just relax around the house. It is rainy and gray outside and we could all use a day of chillaxing. I think there will be Scrabble and Uno games later in the day.

Happy Labor Day y'all!

I want to be like Durga!

Durga is a Hindu Goddess frequently pictured with eighteen arms. As a Deafblind person, I frequently feel like I should be given more arms than a sighted/hearing person. I'll give you a prime example.

Last week I needed to re-certify for CPR and first aid at work. It was a six hour class for which I had two tactile ASL interpreters. Yes, my arms were really, really stiff after it was all over. The CPR instructor played a video which described the CPR procedures and the members of the class were supposed to "practice" along with the video. We were given a dummy to practice with and the video began. Only how do I "watch" my interpreters interpreting the video and perform CPR on the dummy at the same time. Also the entire thing became so ridiculous that both of my interpreters, and myself could not stop laughing.

I "watched" the video, and then began my work on the dummy. One interpreter tapped me on the arm to mark chest compression, and the other breathed on me to indicate when it was time to give rescue breaths, otherwise known as mouth-to-mouth.

I really could have used some extra arms then, that's for sure. So if anyone has connections with Durga, please kindly ask her to lend me some of her arms!

Hands

When folks think about someone who is deaf and blind, most people's immediate response would be to think about how much that individual is missing. They can't see, they can't hear, so what else is there?
...

There are hands. I have never realized how widely people's hands differ from one another until I became deafblind. One of my interpreters has large hands. He has a chunky ring on his left ring finger. It has engravings on it and I think it is beautiful. His hands move confidently, sketching the words in the air. I would know him anywhere by those hands.

My friend has small hands. They are the hands of an older woman-- hands which have seen many years. They are graceful and gentle. They flutter softly against my own, but will then suddenly become emphatic. She tells funny stories with her hands-- has given me so much encouragement with her beautiful old hands.

I talked to a man who had more hair on his hands than most men have on their faces. I felt like I was having a conversation with Bilbo Baggins because of all the hair. For years I couldn't remember his name. I continued to think of him as "Bilbo."

Her hands are long and slender. She usually does musical interpretation for me. She is the song made flesh. She brings the music to me once again through her hands.

I never knew I could learn so much about a person by their hands. Their mood, their body type, their taste in jewelry,or fancy nail polish. I met a lady once who had a ring on every finger. Talking to her was very distracting. I imagine it's the same for a hearing person with food in their mouth, only less gross!

Hands guide, they communicate and teach. They read and answer questions. When I became deafblind, it never occurred to me how hands would open my world.

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
<"Bookshare">
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!

Why do you do it?

Mister Pawpower's search for an assistance dog candidate has caused some interesting reactions and these reactions have made me think-- about myself, my reasons for owner training and how it is viewed by the larger assistance dog community. Until around five or ten years ago, it was not common at all for blind people to train their own guide dogs. It was done, just not by very many at all. Owner training was an option used more by persons with other disabilities. People who are deaf or hard of hearing, or people with mobility or medical issues were more likely to train their own assistance dogs. This is because programs which serve these populations tended to have a longer wait list, to have more stringent requirements for acceptance, and to require the payment of large sums of money for their services. A blind person could get a guide dog from a program in under a year after the first application, and more times than not, the dog was given with no fee owed. Guide dog programs didn't have rules about having other pet animals in the home, or other rules about keeping one's retired assistance animal.

However, due to several factors, more and more blind people have made the decision to owner train. I don't think most people understand that this decision isn't made lightly. Owner training is costly, both in financial and time resources. It takes a very specific skill set. The dog has to go through the process of training and the handler has to put in a great deal of focused, intensive labor. The dog could then wash out and the handler is back at the beginning.

Most people put serious thought and consideration into their decision, but many people seem to be asking my husband why? Why would he want to owner train? Why doesn't he go to a program?

I can't speak about Mister Pawpower's feeling and own personal choices. I am not him, and his tale is not mine to tell-- his reasons not mine to explore. However, I can give some general reasons why someone would want to owner train.

Many people owner train because they cannot attend a program. Perhaps their disabilities make attending a program, or working with a trainer from the program in their own home unmanageable. The person may have Multiple Chemical Sensitivities (MCS), they may have such a unique combination of disabilities and considerations that no program feels equipped to train an assistance animal to meet their needs. They may have work, family, or medical commitments which prevent their going away to a program for the specified period of time (usually a month).

Many programs have very specific rules. These programs put these rules in place because they feel it is in the best interest of the populations they serve, and the dogs they train. However, many people don't want to follow these rules. It is highly preferable to find another alternative than to submit yourself to a program whose rules you cannot or will not follow. Many programs reserve the right to repossess the dog if these rules are violated, and the horror and grief over losing your partner due to such a dispute would be much more painful than the impatience of a longer wait for an assistance dog either owner trained or from another program. An example of one of these rules is that some programs state that you may not have other pet, or retired assistance dogs in the home with your working dog. They have their reasons for feeling like this is an important rule, but many people have beloved pets and have managed to go on to have a happy working assistance dog partner and a pet or retired dog living together.
Many programs will not transfer ownership of the dog upon completion of the program. For me, personally, this is a huge sticking point. My choice of programs to attend-- already limited by being Deafblind and using American Sign Language as a primary means of communication, is even more limited because I will not submit myself to a program which will not grant me full and total ownership of my dog upon completion of the training period. People can argue with me until they are blue in the face about this issue, but my mind is very thoroughly made up. We all have "that one thing" which we will never compromise on, and for me it is ownership.

Some people do not want to attend a program because they have firm beliefs in certain training, and rearing methods. Out of necessity, programs have a pretty cookie-cutter approach to dog training and care. They do try to meet every dog's needs, but most dogs will have their needs met-- both behaviorally and physically-- by the training/rearing method of choice. Again I can speak from personal experience. As a clicker trainer and a big proponent of Natural Rearing; it is extremely important to me that my dogs be fed a raw diet as soon as possible, and that they be minimally vaccinated, and treated using a blend of standard medicine and herbs. It is also extremely important that my dog be operant. This means that the dog has realized that she can operate on her environment and that the clicker or other marker has been established as a tool for communication. Many programs use it as a behavior marker, but clicker training is so much more than the clicker. It is a way of thinking-- for the person, and their dog.

Finally there are people who honestly enjoy the process of owner training. I'll grant you, we are few and far between. There are many good reasons for this-- see the part about intensive work above. But we do exist, and for us, it is a true passion and enjoyable experience to train dogs to this level.

The words "harder" and "easier" are very subjective. When people ask Mister Pawpower, "wouldn't it just be easier to go to a program?" They are speaking from their subjective view of what is "easy." For many, it is "easier" to train a dog themselves then to risk exacerbating medical issues, leaving home for a month, obeying rules which chafe, or which go against your grain. For the majority of the folks out there, this is not true. But there are always exceptions.

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!

Only Words?

I've been wanting to talk about language, and how its used, for quite some time now. Especially as it relates to how we describe ourselves as people with disabilities.

We each have our own identity, and my identity is just that-- mine. I don't believe that my identity or the terms by which I describe myself should be used by everyone. It is up to the individual to define their own identity. This blog entry is about my identity and the language I use to define it.

I'm Deafblind. There-- I said it; Deafblind. Two of the most dreaded words in any language compounded into one. Deafblindness is its own unique state of being. It is neither deafness, nor blindness, but both, together. This means that the technological, social, and practical alternative techniques used to live a full and happy life are not the same as those used for those whose only disability is deafness or blindness.

I am a Deafblind person who is learning American Sign Language, which is its own unique language. It is not English broken down into gestures. ASL has its own grammar, syntax and idioms. I am becoming more involved in the Deafblind community. Each day that passes I am becoming more and more culturally Deafblind.
I guess I should go back and explain the difference between Deafblind (large D), and deafblind (small d.). Deafblindness is cultural. People who are Deafblind use American Sign Language (or other local signed languages) to communicate. Deafblind people have their own history, set of values, and traditions. Now we get to deafblindness, which is the medical condition causing the hearing and sight loss. There are many people who can be deafblind but who still prefer to use spoken language to communicate. These people are usually not involved in the Deafblind community, and do not accept Deafblind cultural norms for their own.

When people speak of my lack of vision or hearing I want them to use the word "Deafblind." I eschew ridiculous terms such as hard of seeing or hearing challenged. The term sightless is annoying, archaic, and brings to mind the image of a man begging on the street. It is putting the focus upon what I do not have.

The term hearing impaired is offensive. Hearing people were the first to use it, in an attempt to be more politically correct. Again, the person who cannot hear is described as being lesser. Hearing is seen as "normal" and therefore better. A hearing person is not better than me. I have my own identity and I want to be described as Deafblind.

Think of it this way. We have many different religions world-wide. Imagine if we took one religion, lets say... Mormonism and made it the "norm." Everyone who wasn't a Mormon would then be called religion impaired. Would you like that? Would you like for your identity as a Catholic, or Muslim, or Wiccan to be dismissed as not the norm, lesser than, Mormons?
When people use the phrase (fill in the blank) impaired, the focus turns to what the person is lacking, not what they have. I do not want to be defined by what I am not. At first it may seem polite to use the word "impaired" lest the label deaf, blind, hard of hearing etc. be seen as offensive to the person. Some people don't mind being defined as impaired. Some people keenly feel the loss of a sense such as vision or hearing, and do feel as though they are lesser than a "normal" person. However, as I said, this is my blog and we're talking about me.

Our society is afraid of deafness and blindness. We are afraid of offending the deaf or blind person so we come up with all of these politically correct workarounds. I also think there is another element of fear involved; the fear of deafness and blindness itself. If you use words like "sight challenged" it sounds a great deal less final, and scary than "blind." Our society doesn't like saying the words because we don't like to think about deafness, or blindness, or even more so, deafblindness. I have noticed this particularly with blind people. I have met many blind people who do not like to use the word deaf. No matter how many times I remind them that I'm deafblind, some people continue to refer to me as a bit hard of hearing, or hearing challenged. Just like sight loss is one of the biggest fears of many sighted people; hearing loss is one of the biggest fears of many blind people.

I want to be referred to as deafblind. Deafblind is what I am. The label of deafblindness does not seek to put limits on me; or to make me seem lesser than, the norm.

Deafblindness is another characteristic of mine-- like my red hair, my freckles, or my ability to wiggle my ears.

Deafblindness itself doesn't limit me; society does. Every time a deafblind person doesn't get an interpreter for a doctor's appointment because someone in the office didn't think they needed it, or forgot to schedule it, we are being limited. Every time a deafblind person is denied access to a restaurant due to the presence of their assistance dog, that is another way society limits us. Every time a deafblind person is dismissed from a job interview before it has even started because the person doing the interview is ignorant about the capabilities of deafblind people, that is another challenge put in the deafblind person's path. The people doing these things make up our society. If I'm impaired in any way; I am societally impaired.

Words matter. My words matter; your words matter. We should all think before using them.

Live What's Given

While looking at blogs today, I read a post from our friends over at
<"Ruled By Paws">

She wrote about some of the positive ways blindness has impacted her life. She had read another person's blog talking about these same things and this inspired her to write her own post. The original blogger ended their post with the words "Live What's Given." The posts I have read have encouraged me to write about my own disability.

I was born blind. I went to public school, and my family treated me like any of my other four sisters. Ever since I could remember, my goal was to be a musician. I played many instruments-- guitar, drums, and piano but my true love was singing. I took private voice lessons, sang in choirs, and when I graduated high-school, I packed my bags and went to music school. During the third year of music school I went to bed one night, and woke up the next morning profoundly deaf.

It would not at all a melodramatic statement for me to say that I felt like my world was over. I didn't read braille fluently, all of my books were on tape. I couldn't listen to music, I couldn't read, I was afraid to leave my house. The doctors didn't know what was wrong with me. They tried antibiotics, steroids, ear drops, nose drops, and nothing worked.
Eventually I was diagnosed with
<"Meniere's Disease">
This is a progressive inner ear disease which causes hearing loss, vertigo and tinnitus or ringing in the ear. Most people have it in one ear, but I number among the 5% who has it bilaterally.

This disease caused my hearing to fluctuate from day to day. I'd be profoundly deaf for a while, and then gradually my hearing would come back. However not to the level it was before. One doctor told me I'd have about ten to twenty years before I became profoundly deaf, while another doctor told me that I may not lose all of my hearing. Meniere's disease is the great unknown.

Obviously I couldn't be a music student any more. I was devastated by this because I had never wanted to be anything else. Life, however doesn't stop just because you think it should. I moved on and eventually went to school for a marketing degree (which I hated but I hated everything so...)
In 2003, I packed up my life and move to New Orleans. In 2005, our city was devastated by hurricane Katrina and the subsequent failure of the federal levees and we lost everything. I spent seven months in Memphis, aka Elvisland, and hated every moment of what I saw as forced exile. Eventually I was able to come back home to New Orleans.

On March 26, 2006, I arrived in my new (to us) home in the big stinky. By the middle of May of that same year I was irreversibly, profoundly deaf. Doctors were puzzled but eventually they decided that allergies to the great amount of mold in the city at this time, had triggered my Meniere's disease, and caused such severe damage that the hearing wasn't coming back.

I could no longer use the phone, have conversations with people, hear the fire alarm, read traffic on the street or teach large classes at work. I was too deaf in my right ear to benefit from a hearing aid, but could use one in my left, so I began the long process to try and persuade the government that they needed to buy me one, since my insurance would not.

People had all kinds of ideas about how I should live my new life. Stay home, they said. "You might get hit by a car, let us go to the store for you."
"Get a cochlear implant, then you can be normal again."
"Go home and let your family take care of you."

I was not having any of that. I made up my mind that I was going to learn American Sign Language (ASL) and that I was not going to live the rest of my life being afraid to leave my house, and that I was not going to get some surgery just so that I could be "normal."
Many people told me that I shouldn't bother learning ASL.
"You're blind, you can't see it! Deaf people won't like you, they won't talk to you because you are blind. You aren't going to find anyone who will teach you, or who will talk to you. Just get a cochlear implant!"
I refused to listen, and began work to advocate for ASL lessons from the Department of Vocational Rehabilitation.

In October of 2008, I met my ASL teacher and began learning. Earlier, in April of 2007, I met a deaf woman here in New Orleans and she began taking me to Deaf and Deafblind events all around the city and the state.

The people at these events didn't live their lives in fear, they didn't live them apologizing to the world for their deafness or their deafblindness. They signed, they had friends and families and had rich, active lives full of love and fun and personal growth. At first, when I went to these events I was terrified. I felt awkward and like a huge fumbling moron. I was just sure that everyone was staring at the weird deafblind lady with the dog who was trying to sign. But I never met with a word of unkindness or cruelty. People were patient, and they taught me by their example to be proud of who I am, to live what's given and to do it loud!

In September of last year I was accepted to the Seabeck Deafblind retreat in Seattle, Washington. Not only was I accepted but I was asked to teach a tea making class. I was so nervous. I'd been studying ASL for two years by then, but I was just so afraid of making a mistake. That week in Seattle was unforgettable. I met Deafblind people from all over the world. I participated in activities like tandem biking, boating and even dancing. People came to my tea making class, and I did not make an ass out of myself, and what is more, people said that they liked it! They liked me! When I made signing mistakes, people patiently corrected me, and I learned so much from their kindness.

In June of last year I got an SSP who helps me go shopping, takes me to the doctor and helps me fill out forms, and does many other things with me. The SSP makes my life so much easier.

I use interpreters now for large meetings at work and it is a huge reduction in my stress level.

My deafblindness has changed my life, it has brought me into contact with so many wonderful people who have given of themselves with no thought of what "they'd get out of it." What is more, I have found strength inside myself that I didn't even know I had.

I remember those first weeks after I came back to New Orleans. The distinctive post-levee-failure aroma, the sidewalks crowded with the sodden, moldy remnants of what had been, someone's life. The stories I heard day in and day out of waiting of roof tops for rescue, of floating in filth-infested waters on kitchen appliances, of the ones who didn't make it. Then I lost my hearing, after losing everything I owned, or nearly.

Deciding to live what you are given is not a choice you make once and then move off into the "great happy ever after." When you decide to live what's given, it's a choice you make every morning. You can choose to stay in bed, to bury your head in the pillow and hope it goes away. Or you can decide to get up and get on with life. There are days I took the bed and pillow rout, I won't lie. But at the end of those days, I wasn't a better person for having done it.

People ask me, would I have still moved back to New Orleans if I had known that the mold in this city would leave me deaf in six weeks. My answer is yes. I would rather be deaf in New Orleans than hearing anywhere else in the world.
The novelist, and New Orleans native Poppy Z. Brite said:
"If you belong somewhere, if a place takes you in, and you take it into yourself, you don't desert it just because it can kill you. There are some things more valuable than life."
Hurricane Katrina and the failure of the levees was a dark and horrible time. We all lost so much. However, as I look at my life today, living in a place I love, surrounded by people I love, with services which allow me to live a free and independent life, I would say that I am luckier than I have any right to be.

Ya Gotta Start Somewhere, I Guess

Hi,
This is my very first post in my very new public blog.

I guess I should start this thing by explaining who I am.
I live in New Orleans and am married to Mr. Pawpower and together we own
<"Pawpower Creations">
We have many dogs, and they are always doing crazy things. I'm Deafblind. This means that I can't see or hear very well. I can still see and hear a small bit, but more often than not, using my residual sight or hearing tends to land me in hot water. My husband, Mr. Pawpower is blind, but hearing. Our dogs are either retired or working assistance dogs. We have three golden retrievers, and one Doberman mix, three females and one male, and no the Doberman isn't a male! This is like, one of those logic puzzles.

Bristol is almost thirteen years old. She is retired and is, herself, losing her vision and has lost most of her hearing.
Mill'E-Max is the brains of the outfit. She also has a wicked sense of humor. Don't let people tell you that dogs don't have senses of humor because I know differently. Mill'E-Max used to be my guide, hearing and service dog, however she has some joint issues so has to limit her guide work. Instead, she mainly does in-house chores such as retrieving dropped objects, alerting me to sounds in my environment, Bringing objects from one person to another, and retrieving my beer from the fridge, and no, she doesn't drink it!
Rudy is my husband's guide dog. He's seven? He's the only guy and is bossed around shamelessly by his female counterparts. He drools a lot, and likes to take up lots of floor space on airplane flights.
Laveau is my guide dog, she's three and is the Doberman, something-something mix. She was named for Marie Laveau and that's another story within itself.

I'm learning ASL. Teaching a person who's been blind since birth a visual/spacial language is kind of an exercise in patience. Well, patience and humility. I'm kind of starting to like humble pie. I have a great teacher and our lessons are always full of laughable moments. Usually at my expense, but I don't mind!

I like to cook. I have a thing against using recipes. I usually just make shit up as I go along.
I'm a qualified Herbalist, and make Aroma Therapy Products. In my Medical Herbalism work, I deal mostly with dogs, and sometimes cats. They don't complain as much as people.
I'm about to sit my qualifying exam to become a Certified Canine Massage Therapist. I have lots of willing volunteers to practice on, let me tell you.
I do have a grown-up day job. I teach Braille to blind and deafblind adults. Since I love to promote literacy, and since I think Braille is beautiful, and since I love to read, this is a great job for me. I love my clients!
As mentioned above, I love to read. I use my Braille Note, which is a small PDA with pins that pop up or lay flat to form braille letters. All of my books are in electronic format, and are loaded on the Braille Note. I take it everywhere.
I also love technology. I have a Macbook and an iPhone which I love. I hook my iPhone to my Braille Note via bluetooth and the information which appears on my iPhone screen now pops up in braille on my Braille Note.
I'll stop blabbing now, and will begin backdating some entries I have written previously but never got around to posting.
WAGS!