Wednesday, June 27, 2012

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.

Thursday, June 21, 2012

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!

Sunday, June 17, 2012

How Many Retrievers could a Retriever Retrieve, if a Retriever Retrieved Retrievers?

For some time now, I've been realizing just how many things Mill'E-Max does for me through out the day. As she ages, I know that eventually she will get tired of being the house elf, at my every beck and call. After thinking about this, I started realizing all of the every day things she does for me, that I don't even really think about while she's doing them. And then I think about teaching all of this stuff to the next service dog, and my mind just boggles at the mir thought of this monumental task.

All in all, Mill'E-Max does six kinds of retrieving at different times through out the day. It's an awful lot once you break it down like this.
The first kind of retrieve is the Regular Working Retrieve. An example of this is when I drop something, and she gets it with a "take it" cue.
Second kind is the Named Retrieve. This is when she retrieves something by name. Some examples are shoes, Coke, leash, hearing aid, water bottle, phone, or her dish. (water bottle means my metal water bottle. Coke means any plastic bottle). She may have to search the house for the named objects in question before retrieving them.
The third kind of retrieve is the Matching Retrieve. Sometimes I want her to retrieve a specific item which has not been formally named. If I get a similar looking item and show her, she will search the house and find the thing that looks closest to the thing I showed her. This is helpful if Gracy has stolen an item of clothing to sleep with, and I can't find it. Gracy is actually the reason I trained this retrieve to begin with. I have used this retrieve to find everything from a medicine bottle to a laptop bag.

The next retrieve is the repeated retrieve. This is used if I need her to do something multiple times. This is used for things like unpacking suitcases, emptying the dryer, or helping me to unload groceries. It is not a one shot deal; several things need to be retrieved, usually not from the floor but "out of" something. She will either bring this to me, or put the item somewhere else.

One of the most useful retrieves is the Thinking Retrieve. All retrieving requires some thought but this relies upon the dogs observation and problem solving skills. Sometimes I will drop something which does not have a name, and which does not have a matching item. If I do this out of her sight, I still need her to get it. She needs to come into the room or area where I dropped said item, and search the room for the thing that doesn't belong. If something is in the wrong place, she will bring it to me if I ask.

The final kind of retrieve is the Retriever Retrieve. Bristol, my retired goddess has lost all of her hearing. when she is off leash somewhere, or in the back yard, Bristol may not see me sign to her, and can't feel the vibrations of me stomping to recall her. She wears a short traffic leash, and I can send Mill'E-Max out to grab Bristol's leash, and bring her back to me. This took a lot of training-- for both Mill'E-Max, who needed to learn to walk slowly, and pause before going up the steps, before bringing me the leash. Bristol needed to learn to trust Mill'E and how to walk with her.

Mill'E-Max performs between 20-30 retrieves a day. She has retrieved a dime from a hardwood floor, and has carried a gallon of laundry soap to the laundry shed. She used to love going to the mini-mart because I would let her carry one of the items the two blocks home. One time someone saw Mill'E-Max leave the store with a bag of chips in her mouth. The person went to store management, offering to pay for the chips. She assumed that Mill'E-Max had stolen them while I wasn't aware.

Mill'E-Max can have a sense of humor about retrieving. She likes to cary wrapping paper tubes in her mouth. She holds it by the end, and enjoys walking around the house making a ggrrr sound into the tube. She looks like a dog smoking the worlds biggest cigar. Also it is very hard not to collapse, helpless with laughter while she is walking around the house, tail furiously wagging, with this tube sticking about 2 feet out in front of her. I need to get video of this!

And that, my friends, is probably more than you ever wanted to know about the retriever who retrieves retrievers!

Tuesday, June 12, 2012

Morning Chaos

This morning, things were going along rather smoothly, for a morning, that is. I'm not really a morning person. Because of this fact, I tend to do everything the night before so I don't have to do any thinking before I have my tea. Since I don't get my tea until I get to work, I am basically on autopilot until around 8 am.

This fine morning, I woke up, toileted the girls, fed them, got ready to go, packed all of my gizmos-- Braille Note, iPhone and its accompanying display, meds, lunch, etc. etc. My bus usually comes around 7:30. I finished getting ready around 7:20, and went to put on my hearing aid... only it wasn't in its usual spot in my top drawer.

Thus began the mad search. I first tried a sort of half-assed search, hoping it just got jostled a bit and I could find it quickly. I soon realized that this was not going to happen. Around 7:22, Mill'E came up to me and alerted to the arrival of my bus. She was quickly followed by Laveau alerting to the same, then Gracy who is here for a visit, but who obviously still remembered how to alert. And I ask you, how the heck am I supposed to find anything if I have three dogs telling me the same thing over and over again?
Part of it was the driver who seems to have an unnatural love of his horn-- he loves to honk it. Several hearing people have noticed this and commented upon it to me.

So the whole thing went something like this.
Me: *starts taking things out of drawers*
Driver: *honks horn*
Mill'E-Max: *nudge nudge!* "Bus is here!"
Me: *acknowledges Mill'E-Max and begins sorting through contents of drawer, removing various items.*
Laveau: *nudge nudge!* "Bus is here!"
Me: *acknowledges her, and begins removing more drawer contents... lip balms (why do I have four tubes of the stuff?) lotion, allergy meds etc.*
Gracy: *nudge nudge!* "Bus is here!"
Me: *acknowledges Gracy, grits teeth, thinks fluffy bunny positive trainer thoughts. Searches through more stuff-- puts Bristol's eye drops in pocket so as not to forget to do them before leaving*
Driver: *honk! honk!*
Mill'E-Max: *nudge nudge!*

Eventually, I found the damned hearing aid, got my dog harnessed, and my iPod set to play music for my dogs while I'm at work. While I was plugging the iPod into the speaker thingy which is on Baylee's crate, I managed to lock Gracy in there, some how! I only realized this upon my arrival home and not finding her anywhere, which freaked me out and caused me to think she had died, or something.

I also forgot to give Bristol her eye drops because I got so flustered from all of the honking and searching, and nudging.

So now I'm home early to give Bristol eye drops and to let Gracy out of the crate.

Woo! What a morning!

Tuesday, June 5, 2012

Doggie Drivel; What's in a Name?

So dog/cat owners, I have a question for you. I've kind of been wondering this for a while, and decided to ask. It seems, Some of my dogs will end up with a nickname which doesn't faintly resemble their given name. But I say it so often that they respond to that name also. It hasn't happened with all of the dogs, but the two best examples are Gracy and Baylee.

Gracy is also known as "The Cheez" or "Cheez Wizard." There are millions of adaptations of "Cheez" but where did I get Cheese to begin with? Gracy some how got stuck with an additional name after I adopted her, and became Gracy Louise. I was living near to a Baskin Robins' store at the time, and got their Cheese Louise ice-cream, and liked it, so then Gracy Louise Became Gracy Cheese Louise. And there you go.

With a name like Baylee, you knew the Herbalist would call her dog things like Bay Leaf, Sweet Bay, and Bay Laurel, but the most frequent name was Bay Rum. Bay Rum became Rum Punch, and is now Rummy Rum Punch.

Last week, I was sitting on the porch with my friend and without thinking, I said: "RummY Rum Punch, sit!" And my friend looked at me like I was crazy! Who, exactly was I talking to? So I had to explain about the nicknames thing, and he thought that was weird. But I don't think I'm alone in making crazy nicknames with these huge long stories and meanings behind them, am I? Help me out here, Blogville!

I mean, not all of my dogs have these long Nicknames. Laveau has the least of them with "Veau Head" being her only Nickname. Which doesn't count for things like "Sister," "Girl," or "Chica." Which I call all of them. Am I just crazy? Do I want you to answer that? I think I'm becoming "That crazy dog lady."

Monday, June 4, 2012

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.