Friday, April 29, 2011

no comment

One frustrating thing about working an assistance dog, is that suddenly everyone you know, and everyone you meet seems to be a dog trainer. They watch "It's Me Or The Dog" and "The Dog Whisperer" and suddenly Victoria and Cesar have taught them everything about how to train, and interact with, a dog.

These people seem to feel perfectly justified in making comments about the way my dog does, or does not, do her job. Most of these same people either do not have a dog of their own, or they have small dogs who are spoiled, under-socialized, and out of control. The fact that these people cannot even train their own dogs to a reasonable degree does not seem to stop them from being "armchair dog trainers."

We have the "Pack Leaders." They believe that I need to "dominate my dog. Be the pack leader!" This usually involves a metal training collar of some variety or other, and corrections with a leash when the dog engages in undesirable behaviors.

Laveau does not wear a metal training collar because she has a very soft trachea and cannot physically handle collar corrections. I am a clicker trainer. I prefer to , train and maintain Laveau's behaviors using the principles of operand conditioning; mainly positive reinforcement, negative punishment, and extinction.
When one of these "pack leader" types sees my dog make an error, and then sees me stop, do some re-focusing work, and give her another chance to do the correct behavior, they come up to me, tell me I'm spoiling my dog and "rewarding her for misbehaving." They tell me that my dog won't "respect you unless you are the dominant one!"

There are people who use leash corrections with their assistance dogs. While this is not a training method that I, myself use, I respect the fact that others use it successfully and humanely. Clicker training works for me, and it works for my dogs. It doesn't make them "spoiled" and it doesn't make them "disrespect me."


Then there are the ones I've named the "Anthropomorphites." They attribute human emotion to my dog. They "feel so sorry that she has to work." They try to sneak her food under the table in restaurants because "she looks so hungry." They lecture me for "bringing that poor dog" to events such as outdoor concerts and Mardi Gras parades. They get angry when Laveau is panting heavily and I refuse to give her water. Laveau has a soft trachea and she cannot drink large amounts of water when she is panting or she will throw up. I have learned this from hard experience. I understand how it looks to people, but at the same time, my dog is obviously well cared for, people should trust my judgement. This also goes for bringing her to events such as outdoor concerts. I realize that most dogs can't handle events like this, but Laveau does just fine. If she couldn't handle these kinds of things, and even enjoy working in this environment, she would not be my assistance dog. As for people attributing emotion to her because of the way they interpret her facial expression.... I don't even have words. My dog eats, and is a healthy weight. While humans, (me included), may look at their job with a mix of irritation and exhaustion, dogs don't think that way. You can't "force" an assistance dog to work. They work because they love to do it. I wish I loved my job half as much as Laveau loves hers.


Then we have the "commentators." People who love to give me a running commentary of my dog's perceived wrongs. "She's getting distracted." is a frequent one. My dog is a Doberman. This means that she is very cautious of my safety, and very aware of, and curious about, her environment. Sometimes she will take her time with me-- especially if she feels that I'm unsteady on my feet. She will frequently look around while walking slowly or while pausing on a step or curb. Apparently this looks as though she is distracted. Does she get distracted sometimes? Yes! Absolutely. We all do; dogs aren't perfect because nobody is perfect. I sometimes get distracted, so does most everyone else I know. However when my dog gets distracted, or makes an error, the "commentator" loves to make some remark along the lines of "is she still in training?" or "you should call the program who gave her to you and ask about retraining."
This is very frustrating. People watch too much animal planet and have a very unrealistic expectation of what assistance dogs are, and are not. If I wanted a robot who never made mistakes; I'd get a robot.

Like I said; Laveau makes mistakes sometimes. This does not mean that she isn't a "real guide dog," or that she "needs more training." When people make mistakes are they then "not real?" or do they need "more training?" From time to time I may focus on improving a skill or behavior with Laveau. This is my decision, and mine alone. For the most part, she's an awesome dog.

If you meet an assistance dog team who seems to be having a hard time, my best advice is to shut the hell up, and mind your own business. It is neither necessary, nor advisable to comment on someone's assistance dog. I don't care if the person is a friend, a family member, a coworker, or stranger. It is rude to offer unasked for advice. Like my mama said-- "If you can't say anything nice, don't say anything at all."

Wednesday, April 27, 2011

A Question of Manners

I have a question for all of you in blog-land.

I have an iPhone. It is connected, via bluetooth, to my braille display. Apple has built a "screen curtain" into all their products. This feature blackens the screen so people can't read it. Usually I have this feature enabled, but sometimes not. I find that when I'm in public, either texting, or using my Mac, and the screen curtain is not enabled, people will stand near me, to watch, and read my screen. I find this rude, annoying and intrusive. This is why I usually have the screen curtain turned off on both my Mac and my iPhone when out in public. It doesn't keep the nosys from staring, but at least they can't read my screen.
I know people don't mean to be rude, and that most people don't think about it, that they are just so fascinated with my technology, bla bla bla. I really don't give a tinker's damn that their intentions are good; I want to be left alone.

So my question to you, is it normal for sighties to do this to one another. In other words, if you were to see a sighted person in a coffee shop who had a laptop or cell phone, would it be socially acceptable to stand there and visibly read their screen? Am I just too prickly and should just chill out? If sighted people do it to each other and it isn't considered "rude" I'm more than willing to look at this issue differently. Right now, however, it just feels like a huge invasion of my space, and like because people know I'm blind, they think it's perfectly ok to engage in behaviors which are not acceptable to do if I were sighted.

Monday, April 25, 2011

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.

Sunday, April 24, 2011

Reactions to Laveau's Brain

This post is for
<"The Third Assistance Dog Blog Carnival">
This time around, the topic is "reactions."

To be honest, I didn't think I'd write for this carnival. The topic of the publics' "reactions" to the presence of assistance dogs in public places has been pretty well talked out, and I have nothing new to add. Then a conversation with a friend got me thinking.

My current assistance dog, Laveau, is a Doberman mix. People like to say she's mixed with lab, but personally, I don't see it and am leaning more toward hound of some kind. People frequently ask me, "What breed is she?" I reply, "Doberman mix." Then it starts...
"That is dangerous to have a Doberman out in public. Don't you know that Dobermans have a condition where their brains outgrow their skull? When this happens, they go crazy and start killing people."
If I had a dollar for every idiot who has spouted some form of this untruth, I could retire and live the high life with my crazy Doberman.

There is a disease where the brain can put pressure on the skull. It is called
<"syringomyelia">
This condition is most frequently found in Cavalier King Charles Spaniels, although rarely can be found in other breeds. It is not normally found in Dobermans, however. The disease does not "make the dog go mad and start biting people."

But it never fails. If I give a presentation, at an elementary school, inevitably, some six-year-old will start spouting the "brain outgrows its skull" nonsense, and I have to explain that no, my dog will not suddenly start biting the heads off of random children.
I have even heard a well-known guide dog trainer talk about this same issue. She was explaining why Dobermans aren't used much as guides any more and out came that old reliable "brain out growing its skull" song and dance. Apparently, one of the ways a Doberman guide dog owner can tell if the dreaded condition is upon them is that the dog will begin spinning its handler in circles, usually in the middle of the street.

You will be relieved to know that Laveau has not started doing this, or maybe I just have such chronic and terrible vertigo that I don't notice because life is one giant circle for me, anyway.

I have fallen in love with the breed; the watchfulness, work ethic, easy-care coat, size, and Velcro tendencies make the Doberman an ideal breed for my service dog. This means that I'm probably going to be hardily sick of the reactions of the uneducated masses who are worried that my dog will see them as a two-legged snack.

Laveau makes up for all of the misinformed folks out there by being a devoted and careful worker. Hopefully, when people see her work and her calm demeanor, their reactions will change.

Saturday, April 23, 2011

A pocket-full of hardware, and other randomness

I've been quiet on the blog of late because things have been somewhat hectic. On Monday Bristol went to the vets' for her checkup and lab work. The vet was very happy with her physical exam and said that everything looked great. He drew blood for labs and said they'd be in by Tuesday morning. The labs weren't in until Thursday afternoon. I was not a happy camper and kept calling the vets' office who was probably equally unhappy at being bothered by the crazy obsessive dog lady. Finally they came in on Thursday afternoon and everything was normal. My vet said that she has the blood of a six-year-old dog. For a thirteen-year-old dog, I'd say she's doing pretty darned good.

I had yesterday off because it was Good Friday and I live in predominately Catholic New Orleans. I went shopping and to lunch with a friend.

Today I helped Mister Pawpower assemble our new barbecue grill that I bought yesterday. I am assembly impaired, or something. I do not know the difference between a washer and a wing-nut. Mister Pawpower, however is the assembly master. I was the official holder of the hardware. Once he explained the differences between washers, wing-nuts, nuts, bolts and lock-washers, I was good to go. We got the barbecue grill put together and I screwed the handle onto the lid of the grill all by myself, and I didn't even break anything!

After we finished with the grill, we went to the store for beer, but alas, they don't have their liquor license as of yet. This is very sad because in my humble opinion, beer is an integral part of any proper barbecue. Hopefully we can solve this problem by tomorrow which is the big day.

We used to live in another house about three blocks away from our current one. Our neighbor was this elderly lady who was at least eighty-five years young.
Well one day, shortly after we moved in, Mister Pawpower and I decided to do a barbecue. We had some friends over and Mister Pawpower took the charcoal, the lighter fluid and the matches outside. He had just lit the coals and the flames were kind of high when our neighbor stepped outside. all of the color drained from her face when she saw the blind man with the matches and she yelled "OH SWEET LAUD!!" You could tell that her horror of the blind man playing with fire was doing battle with her proper civilized southern lady sensibilities. The sensibilities won out and in a very calm voice, she said "Ah, you're barbecuing... I see...."
I did not make any sarcastic remarks about her need to overstate the obvious, but instead offered her some food as any proper Southerner would do. She declined and went back into her house.

However she still didn't trust my husband not to burn down the entire block, and our sighted friends frequently saw her twitch the curtain aside to look out the window. Guess she wanted to make sure that our back yard didn't become an inferno while she was unaware.

We have not barbecued yet since we've been in this new house, so the reactions from the neighbors might be interesting.

It's that whole assumption that blind equals incapable. Educating by doing, I guess that's how I'll teach 'em.
I really want to learn to barbecue so Mister Pawpower is going to teach me how to set up the charcoal and set it alight and how to cook on the grill. I'm very excited about this, but I promise not to burn down our house!

Wednesday, April 20, 2011

Owner Training?

Sometimes people ask me, "What are the qualities that make a person a good assistance dog owner trainer?"
I've been pondering this quite a bit, actually so thought I'd blog about it.

Disclaimer number one: This is my blog so these are my views. My ideas and observations may not align with another owner trainers views on the subject.
Disclaimer number two: I think the word "good" in the question stated above is too ambiguous. I prefer the term "effective." I am not in the business of deciding if anyone else besides myself is an "effective" trainer.

So what are the qualities, according to me, which make an effective owner trainer? I'll list the most important ones and then go into greater depth on each one.
• love of dog training
• willingness to learn
• patience
• a working knowledge of the applicable assistance dog laws in your country

• good orientation and mobility skills (this is guide dog specific)
• ability to keep accurate records
• ability to be honest with yourself
• a backbone

Love of Dog Training:
There is a very big difference between getting a dog from a program and starting from scratch with a dog who may not even know its name. A dog from a program will have learned obedience cues such as sit, down, stay, and loose-leash walking, or LLW. The program dog may have a few bad habits such as scrounging for food, or dog distraction, but your program dog should have most of its training completed.

People who have never handled a completely green dog have no idea what they're getting into. People who have worked only program dogs and who have had no other dog experience may be in for a very rude awakening if they attempt to owner train using the skill set taught by the programs. Programs don't really focus on teaching you to train dogs; they teach you how to communicate with your already trained dog. They may teach you how to train things like how to follow a person or how to target, but a green dog is just that, green.

If you are going to owner train, you have to want to be involved in the process. This could include everything from house-training to teaching the dog its name. You only get to do the public access stuff once the basic obedience, appropriate behaviors such as toilet training and food refusal are fluent.

Training a dog is hard, back-breaking work. It is hot, and sweaty in the summer, and cold and icy in the winter. Dogs don't care if you're tired or busy or that you "don't feel like it." If you want a dog to behave consistently, you need to train consistently.
Willingness to Learn:
Your dog will teach you things about yourself and the training process. Sometimes you aren't going to like the lessons. Owner training is very humbling. If your dog isn't responding or learning, then you need to look for a new way to teach what you want. You may need to go to obedience school with your dog. I have done this with all of my dogs. Sometimes I didn't even really like the trainer much, but I learned something about my dog or myself or about the training process every time I went. As an owner trainer, I'm wrong sometimes. Wrong about what my dog can handle, wrong in my approach, or wrong in my actions. You have to be able to learn from your mistakes and the first part of learning, is admitting that there is an issue.

PATIENCE:
Owner training is a long process. Be patient with your dog and yourself. Patience actually starts before you get a dog. I first learned about patience when looking for an assistance dog candidate. If you go with the first dog you like because you want a dog now! You may end up washing out that dog, and having to start again. Be patient, do research, slow is fast as my friend Karyn over at

<"Pawsitively-k9"> likes to say.

A Working Knowledge of the Applicable Assistance Dog Laws in Your Country:

When you owner train, you're on your own. When you run into access problems, there is no program to back you up, or to tell you what the laws are. Thanks to the wonders of the world wide web, this information is easily accessible, however. You will want to know these laws before you even make the final choice whether or not to owner train. In some contras your dog must come from a an official program, and people with disabilities do not have the right to brain owner trained dogs into places of business. Know your rights and responsibilities.

Good Orientation and Mobility Skills:
This is guide dog specific. If you don't know where the hell you are, or how to get to point B from point A, you are going to have a hard time training your own guide dog. All guide dog programs insist upon good orientation mobility skills before a person is accepted for training with a guide dog. They have good reasons for this. I think it is even more important as an owner trainer to be comfortable with your environment, and be able to navigate it without regular problems. This is not to say that you should be perfect. Heck, I get lost all the time. However I have good problem-solving skills and know how to get myself unlost, if that is even a word. I'm not talking about some "superblindy" who never makes an O&M mistake. I'm talking about a good set of travel skills, and the ability to stay calm and problem-solve. The ability to keep an accurate map in your head is a definite plus, but not a requirement.

Ability to Keep Accurate Records:
If you get into an access denial situation, you could appear in front of a judge who may want to know if your dog is really trained to do work, or perform tasks which mitigate your disability. If you have a program dog, then of course the program trainers will probably come down and testify on your behalf. They will also be able to show written records of your program dog's progress through the training.
If you are an owner trainer, you don't have anyone to do this for you. Keep a training log. Make videos of your dog working in various situations. Keep all documents such as certificates of completion from an obedience school. These certificates may not prove that your dog is an assistance dog, but it will show that you have been training your dog for X amount of time. Do not make the mistake of buying some kind of "certification" for your assistance dog from some schmuck on the internet. In the united States, there is no "certification" and any "certification" you may buy is only worth the paper its printed on. The company who sells you this "certification" won't come down and prove to the judge that your dog has been trained. So keep records!

Ability to be Honest With Yourself:
Sometimes a dog isn't suitable for assistance dog work and you may have to wash it out and start again. In the records you've kept, be honest. Lack of truthfulness with yourself will only come around to bite you in the butt in the end. It may take a while (see Patience, above) but be honest, and if a dog isn't fit for the work, do yourself and the entire service dog community a favor and don't take it into public. I'm not talking about a dog who has its off days, because no dog is perfect. I'm talking about a dog with a serious issue like reactivity or health problems.

A Backbone:
Owner training has become more widely accepted over these last five or so years. However, you are going to run into people who have issues with it. It could be anyone from your family, friends, other people with disabilities or assistance dog handlers. I've met some trainers from programs who have been pretty unpleasant. I've also dealt with all of the people stated above, who at one time or another had a problem with owner trainers and owner training, for a number of reasons. If this is something you want to do, if you've done your research and are determined to do it, you should be aware that you're probably going to encounter resistance, and sometimes outright hostility. If you can't handle that, then reconsider.

When you owner train your assistance dog you are the trainer, the advocate, the public relations, and the handler of your dog. You may have friends and fellow trainers who will advise and help you, but ultimately, you are responsible. If you can't handle that, reconsider.

I owner train because I love the process. I love dogs and dog training. I love the hours of work involved. When I stop loving it, then I will get a dog somewhere else.

Wednesday, April 13, 2011

All About Gracy

Some of you may be asking yourselves "Gracy who?" Whereas many of you already know who Gracy is. However since I'm doing this "all about" feature, I have to include her even though she mostly lives at my friends house these days.

In 2002, I began doing volunteer work at a kill shelter in the city where I lived. I had just moved into a huge house and the landlords didn't care that I was "the crazy dog lady." I was then able to begin fostering dogs in my home who weren't doing well in the shelter environment. However I wanted to adopt a dog-- not just foster one. Bristol had some weird dog social issues which needed to be addressed sooner rather than later if she were to live with me and my new guide when she retired. Not to put too fine a point on it or anything, but out of harness, Bristol was a bossy bitch who had no idea how to have appropriate social interactions with other dogs. I decided that we needed a pet dog in our family who would help her learn these things.

I started my search and on the first day at the shelter, I fell in love with a beautiful yellow lab. She was awesome and so pretty and even though I couldn't take her out of her cage because she was still in quarantine because she had been found abandoned, I knew I wanted this dog. Yes, I was a shallow idiot back then. I waited the mandatory two week period for someone to claim her, and nobody did. Meanwhile, I visited her daily when making my rounds at the shelter. She shared her kennel with the saddest looking black dog I'd ever seen. She was filthy, covered with huge open sores and was not doing well in the shelter. I snuggled her too because she was just so pathetic. However she wasn't my dog, and I waited for my yellow lab to get the green light for release.

The day finally arrived. I went to the shelter, sprung the yellow dog from her kennel and instantly knew that this would never work. She was extremely dog reactive, and I couldn't have a dog like that around my guide dog. Back in the cage she went and because I felt bad for her, I took the dirty black dog out for a little love. She was sweet and instantly warmed up to Bristol. My fellow volunteers encouraged me to adopt her. However, see above, re: shallow! She was dirty and sad looking and not the image I had when I saw myself bringing home my new dog. I really felt bad for this dog though, so I decided to clean her up a bit in hopes she'd get adopted if she were a bit more presentable.
While readying her bath, I looked at her file. Her name was Jewel, she was a border collie mix who had been turned in by her owners for chasing the chickens and eating their eggs. I put Jewel in the tub and tried to clip all of the hair away from her open hot spots. I shampooed her, and when I was done, both my friend and I were covered with black fur. Once she was clean, I put her on the grooming table to brush out some of the undercoat. During this entire process, Jewel submitted quietly to the hands and warm water.

When I began brushing her, I started to sing. This was a ritual which had started with my first dog, that of music and grooming. I went through all of my old favorites and when I was done, I ended with the song "Amazing Grace."

"Amazing grace, how sweet the sound
which saved a wretch like me.
I once was lost, but now am found.
Was blind, but now I see."

As I finished the first verse I had what would probably be called "A lightbulb moment from Mother Universe." I knew this was my dog and that I would be leaving with her that day and that her name was Gracy because it was grace which brought us together.

Gracy couldn't come home with me that day because she needed to be neutered. Two days later I picked up an even more pathetic-looking black dog(although still clean) from the vet office at the shelter. She had been spayed, vaccinated for every canine disease known to man, and treated with antibiotics for kennel cough. I took her home in the Elizabethan collar (aka the cone of shame) and put her in my bed where she stayed for the next four days only leaving to take trips outside to relieve. I fed her ground turkey and probiotics and vitamin C. I took her off the meds they gave me and treated her with homeopathy. A week later I had an entirely different dog.

We began taking walks together, Bristol guiding and Gracy on the right. It wasn't long before Gracy started modeling her behavior after Bristol's. There are scientists and dog people who will tell you that dogs don't learn behavior by watching other dogs and I say that they have never worked with border collies. This is the way they seem to learn best.
I knew Bristol was retiring probably within the next year so began tossing around the idea of training Gracy as her successor. Even if she didn't work out as a full-time guide, it would still be a great experience for me to have as a trainer.

Back then, I still subscribed to the "yank and crank" school of training which involved chain collars and harsh leash corrections. It is how I was taught to train, and was the only way I thought guide dogs could be trained. These methods did not go over well with Gracy. The more she screwed up, the more I corrected and the more she shut down. Sometimes we'd do great together but sometimes our relationship turned into a modern day "War of the Roses."
I had moved to New Orleans by this point and made the choice to wash her out as a guide because I just didn't know what to do. She was a great pet but I couldn't handle the not knowing if she'd work for me or not, the inability to take correction and my own irritation with the entire process.

I began training Mill'E and some events in Mill'E's situation lead me to have a sort of Training renaissance. I realized that there was more than one way to skin a cat and began using exclusively clicker training.

One day, I decided to see how Gracy would react to this new method and it was like her inner light came on.

As my disabilities progressed, I decided that it would be beneficial for everyone if I had two working dogs at the same time. I don't mean that I take two dogs everywhere I go-- I mean that I have two dogs so that one dog can guide, and one dog can help out at home. Because I'm Deafblind I need a dog to do sound alerts, and because of my vertigo I needed a dog to do retrieve and carry-based tasks. It is really not fair to ask one dog to work both jobs for a person who is as active and busy a I am.

Gracy blossomed under the new method of training and I began using her as a guide more and more. We traveled for work and pleasure together, via train and plane and bus.
One of my favorite stories of Gracy happened while in an airport. Now Gracy was a farm dog who liked to chase small animals. We had some wild chickens in our neighborhood (don't ask me how we had wild chickens in the heart of the inner city because I had no idea). She had been known to escape from the yard and to chase said chickens which was no surprise seeing as that's what got her sent to the pound last time.
So we're in this airport and I'm relaxing between flights and talking to the lady next to me when suddenly she began describing the following events.
Apparently birds had gotten into the airport and would fly around. Well, one of these birds saw Gracy just laying there and decided to investigate. It landed about 18 inches away from her and walked a complete circle around her, with its little bird head cocked at an angle, just staring at her. I was very worried about what she'd do but I stayed calm and gave her the cue to stay. The bird inched closer and closer, and Gracy didn't so much as twitch a whisker. Eventually it flew away with all of its feathers intact.

Another time I had met my good friend Lisa in the Philadelphia airport. She and I, with our two guide dogs had planned to fly on to a conference together. We made it to our gate, got our dogs settled at our feet, when a lady with one of those little dogs in a carrier sat down across the row from us. The little dog saw our dogs and commenced to barking its little dog bark. "Yip! yip! yip!" Several minutes later, a person with a German Shepherd guide dog entered our gate area. The dog got settled on the floor. Then the GSD began barking back at the little dog in the carrier who was still yipping. So it sounded like this: "Yip! Woooof! yip yip! woooooooooof!! Woof! yip yap!" Gracy had, in the past, been a very vocal dog. She was whiney and tended to bark when startled. At home, she loved nothing more than a good bark fest. However she, and my friends dog lay quietly at our feet while the other dogs yipped and barked until they called our flight.

In 2008, Gracy began showing more and more signs that she wanted to retire. I wanted to let her do that if it was what she wanted, however I knew that she wouldn't be happy to live in the city in my house with its tiny yard. I had moved to New Orleans with my friend Barb and she had had known Gracy since day one. Barb lived in a less densely populated part of the city and owned a huge piece of land with ponds and gardens and trees with squirrels. Barb wanted to take her and I made the very hard choice to let her go.

Now Gracy has a happy retirement getting back to her farm dog roots. She guards the property, keeps tabs on the squirrel and rodent population-- reducing it when she gets the chance and shares her yard with a Bouvier and an Am Staff. Every couple of weeks she comes to stay with us for a few days and we get a chance to love up on her and for our other dogs to see her also.
Gracy has always had a special relationship with Bristol. For many years it was just Gracy, Bristol and me. They were the best of friends and as Bristol ages, I want her to be able to spend lots of time with her border collie buddy.

Gracy was one of the hardest dogs I've ever worked with, however she was one of the dogs who made me grow the most as a trainer. She will be ten in May, and she's starting to get gray around the muzzle now. Ever since I got her from the shelter, she has had the oddest nose; it is dry and pebbly like lizard skin. It's how I can tell her apart from Laveau, by the nose, since they're both black. One of Gracy's nicknames is "The Cheez." I don't even remember how she became known by this moniker, but she will answer to "cheez" or "cheez wizard."

This entry has made me miss her; I may have to call Barb and ask for a visit this weekend!

Monday, April 11, 2011

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.

Saturday, April 9, 2011

Bitches in Brace

Since I was a complete slug this morning, laying in bed with my book and a cold bottle of tea, the dogs were rampy as hell by around noon. My lazing about had abruptly come to an end; whether I willed it or no.

The sky was blue and the sun was shining so I decided to take all three of my bitches for a walk. Once my dogs figure out the concept of loose-leash walking, or LLW, I start taking them on walks with other dogs. All of my dogs are now very used to the way we do things and each knows her place.

Mill'E-Max is the designated guider. She wears the harness, halti and leash and walks on the left. She takes this very seriously and on these walks she does a fantastic job at staying focused and finding the best path which will accommodate all of us. Laveau and Bristol wear a brace. It is a V-shaped piece of equipment with an O-ring at the bottom of the V. Nylon straps make up the sides of the V and each end terminates in a bolt snap which attaches to the rings of Bristol's and Laveau's collars. I attach a leash to the bottom O-ring. Using a brace, I can walk two dogs with one leash.

We took a ten or so block walk around the streets in our neighborhood. Spring has truly arrived and here in the swamp, this means that things are growing rapidly and that vines, shrubs and trees are already crowding the sidewalk. Mill'E-Max did a great job of picking the best way for us all, and when I needed to go right, Laveau would pull slightly ahead of her LLW position, and exert a small amount of tension on the leash so I could feel which way to go. Bristol walked between Laveau and Me. The only issue I encountered was Laveau's need to sniff everything because she wasn't guiding. She seems to have two modes; working, no sniffing, and not working, sniff everything. This issue will need to be addressed, because it is neither safe nor necessary for her to sniff everything. It's not safe because she could easily eat something off the ground and since I can't hear; I can't tell the difference between nose down to sniff, or nose down to eat. I'll be doing a lot of clicking and treating for head up, llw, face forward.

Bristol was pretty tired when we finally made it home. She used to be able to go for miles and miles, but for a thirteen-year-old dog, I'd say ten blocks is pretty good. I think these walks are good for her; she's experiencing some muscle weakness in her hind end, and the more we can do to strengthen those muscles the better she'll be.
Once we got home, Laveau tried to take a swim in her water dish. This resulted in water all over my hall, all over Laveau and an almost-empty water dish. Once I cleaned up the floor, and cleaned the dish (because who really wants to drink out of a dish which has been used for a foot bath) it was cold water for the dogs and cold tea for me!


I have an insane jones for nachos so once I cool down and Laveau gets a chance to rest, we're off to the mini-mart for nacho fixings.


Happy Saturday!

Tuesday, April 5, 2011

Helen and Me

Helen Keller is probably the most well-known deafblind person of our time. Born in a century when people with disabilities were institutionalized, kept at home with their families or forced to beg on the streets, Helen accomplished so very much in her lifetime.

The way the public views deafblind people and many of the opportunities we have now are a direct result of the work of Helen Keller and Anne sullivan.

Using the manual alphabet, Anne would spell words into Helen's palm. Helen's first comprehension of language was memorialized in the movie "The Miracle Worker."

Helen was the first deafblind person to graduate college. She spent her life educating others and bringing awareness to the issues of deafblindness.

There is a very rare film which shows Anne Sullivan explaining the process she used to teach Helen Keller to speak and to speech read using her hand. You can see the video
<"here">

At first it seems like a wonderful thing, encouraging her to speak, and to speech read. I would agree that having as many tools as one can in your "communication toolbox" is a smart idea. But honestly, something about this video bothers me; it bothers me very much.

I feel like Helen is treated like a circus performer in a show. Not there to be of real benefit to others but to "show" what she can do and to "inspire" people. Hearing people think of speech as the "normal" way of communicating. We all want to be "normal." But what is "normal" worth when it doesn't fully meet our needs?Speech reading is hard to do and is an impractical skill for most deafblind people to acquire. However the general (hearing) public feels inspired when they see it. But how much did the ability to speech read by touch really improve Helen's life? Was it more a benefit to the hearing/sighted people around her, to be used as some kind of spectacle?

I know how it feels to be treated like an object on display. When I'm in public, minding my own business people stare at me. They stare at the dog, at the braille PDA, at my hands as they sign and as they touch the hands of my friend or SSP. I deal with the staring, the intrusive questions and constant interruptions because it is the nature of my existence. If I want to be out in public at all, I have to accept the fact that people feel like it is their god-given right to ask me personal questions and invade my personal space. I don't have to answer their questions and I usually try to be polite, but firm when I make it very clear that I'm busy and don't have time to talk right now. However in professional and personal situations I've been asked by people to "put on a show" for others so they can see what "it is like to be deafblind." I understand Helen's need to educate, but at what cost?

Helen really never had a life of her own beyond that of "the famous deafblind woman." People never seemed to see her as an ordinary person. She was always amazing! inspirational! clever.

She is not amazing and inspirational because of her deafblindness, no more than I am. What made Helen special was her drive to learn, her ability to connect with all different types of people, her constant striving for knowledge and self-improvement.

I can't help but be sad when I think about Helen Keller. Would she have wanted to do something else with her life? Something that didn't involve her deafblindness? Was this need of hers, to be able to speak, and to speech read, born out of a desire to be able to better blend in with everyday folks?

I sometimes wish that I could talk to her-- to ask her questions and to tell her what a difference she has made for all of us. She will never benefit from the work that she did, but I will.

Helen Keller was a pioneer. She had no deafblind role-models because she *was* the deafblind role-model. Every day I thank the universe that I was born in a time of great technological advances. Because of the internet, I have met many of my Deafblind role-models both in person and online. Through their example I have learned to be proud of who I am. I have learned that it is OK to be different-- to sign in public, and that if people stare, so what. I have learned that I am not just a deafblind person. I am a deafblind person who is a teacher, a wife, a dog trainer, an herbalist, a pack leader, a friend and a role-model in return.

When people meet me, I want them to see the whole picture-- all of the things that I am and am not. Deafblindness is an important part of who I am, but it is not everything I am.

Monday, April 4, 2011

All about Bristol

Thinking about my blog-- I realized that many readers don't have a very clear picture of each of our dogs, how they came to us, and their individual stories. I decided to remedy this because even if everyone else finds this dead boring; I can still come back and read it and remember them as they were. Since she's the oldest, I'll start with Bristol.

Bristol is a thirteen-year-young female golden retriever. She was my guide dog and worked from July of 1999 until August of 2003. I received her from a program after my first guide-- Rhoda-- died of cancer when she was three.

I really didn't want another dog. I needed another dog because I had just begun experiencing bouts of profound hearing loss and I wasn't safe with a cane. It was a struggle to love this dog who was so different from my first. Rhoda was aloof and frequently distractible. Bristol loved everyone, but was very focused when she worked. When she wasn't working, she wanted to be right next to me, and that hasn't changed at all.

When I got her from the guide dog program she was very ill and malnourished. She struggled with serious health concerns which were brought on by the diet she had eaten as a puppy, and which the program continued to recommend. Ear infections, skin infections, chronic vomiting or diarrhea. It was a living nightmare.

Once I got her home from the guide dog school, my vet took one look at her and told me to send her back. "She's got two, maybe three years before she will have to retire." He was very matter of fact about it, but I couldn't stand sending her back there.

In between vet visits, and the many medications we tried to fix her various problems, I did research. I read about diet, about vaccine reactions, about herbs and homeopathy. I made the choice to put her on a raw diet in summer of 2001.

The only problem with that? She wouldn't eat it. She was normally not a big eater anyway but she seemed especially opposed to the idea of eating raw meaty bones. I didn't give up and eventually got her to eat raw. Once she got all of the cereal grains and vaccines out of her system, I had a different dog. She was actually healthy! It was amazing.

We traveled all over the country together. She was very laid back about everything. She didn't care where we went, or what time we would leave or come back. The most important thing to her was that she was with me. Whether she was guiding in an airport or on a hiking trail, she did her work with so much care and style.
One of my favorite stories of Bristol is about the day we took a hike. I went with a friend and decided to let my friend take me sighted guide so that Bristol could run around off leash with my friend's dog. We were walking down a wooded trail, when suddenly I felt the world fall away from under my feet. I fell at least fifteen feet and landed in a patch of thorny bushes which were growing on the side of a cliff. If those bushes hadn't cushioned my fall; I would have died because the cliff was hundreds of feet high. I remember the feel of the thorns stabbing into my hands, knees and feet. I remember looking down and seeing the green tops of trees on the ground far below. I looked up and saw several feet of very steep cliff between me and the trail above. I called for my friend and she knelt down on the side of the trail, poked her head over and told me that due to her back problems she would be unable to get me out. Forget about the fact that she hadn't been paying attention in the first place and "sighted guided" me right over the cliff to begin with.

I sat there, feeling my ankle swelling and pondering my situation. I heard the rustle of bushes, and looked up to see Bristol, channeling her inner mountain-goat, climbing down to get me. Boy was I ever glad to see her. I put my hands on her shoulders, pushed with my feet, and with Bristol walking backward and me pushing along like a snake, we made up the cliff and onto the trail. We both were covered with thorns and I spent the next six weeks in an ankle brace.

Bristol's favorite activity was swimming. It was actually by accident that she learned to swim. One summer, I was at a pool party. One gentleman had partaken of the available alcoholic beverages to excess and this led him to think that it would be very funny to throw people into the pool. He scooped me up, and threw me in. Bristol came running in after me, and sank like a stone to the bottom. She did not know how to swim and I dove to the bottom and brought her back out. I determined that she needed to learn to swim so I took her to the river and taught her how. Once we moved to New Orleans and moved near the dog park on the levee, she spent many happy afternoons swimming in the river.

I could always count on her when I got lost. Once I attended a large conference with hundreds of other blind people and guide dog teams at a hotel in another state. We hadn't even been there an entire day, when I decided to look through the exhibit hall which was a gigantic room, packed with people, dogs, white canes, and assistive technology gizmos being sold by many venders. I strolled around for a few hours just taking it all in. Once I decided I had seen my fill, I wanted to leave. Only by that point I was so exhausted and confused-- I didn't know how to get out. Bristol took over, wove me through crowds, down halls, found elevators and I pressed the button for our floor. Once out of the elevator, she went straight to our room and nudged the door handle with her nose.
She retired in August of 2003 from degenerative joint disease. Retiring her was honestly one of the hardest things I have ever done. She didn't want to retire, I didn't want to have to work with another partner. I cried every day for a year when I would have to leave her and go off with Mill'E-Max or Gracy. I felt guilty and desolate and when I would come home to find her laying in the same spot on the floor where she was when I left her it nearly did me in.


We did a lot of massage, tried many herbs and dietary supplementation. Eventually she regained the use of her leg. She still guides from time to time-- little trips to the mini mart or the corner store. She still loves to work.

In 2006 she was diagnosed with uveitis as a result of Toxoplasmosis. She was on antibiotics and herbal concoctions for two months. She lost all of her night vision, but regained it after treatment, although she still sees a veterinary ophthalmologist every few months to keep tabs on her eyes.

She is deaf, has thyroid disease and high blood pressure, but other than those things which are typical of her age and breed, she is a pretty healthy old lady.

She is still willing to go anywhere with me and when I'm at home, she is always by my side. I wake up every day thankful for all the gifts she has brought to my life and glad she has stayed so long to share them with me.

Bristol's name, in one of the old English dialects means "A bridge, or a meeting place."
This is the song that will always remind me of her.

Bridge Over Troubled Waters
When you're weary
Feeling small
When tears are in your eyes
I will dry them all

I'm on your side
When times get rough
And friends just can't be found
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

When you're down and out
When you're on the street
When evening falls so hard
I will comfort you

I'll take your part
When darkness comes
And pain is all around
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

Sail on Silver Girl,
Sail on by
Your time has come to shine
All your dreams are on their way

See how they shine
If you need a friend
I'm sailing right behind
Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind

Friday, April 1, 2011

Ramblings of a synesthete

Lately I've been thinking quite a bit about writing and cooking. Both of these favored activities of mine are inextricably linked. I think about writing when I cook, and I frequently write about cooking. The two things are the same in many ways for me. Both letters and words, as well as ingredients for cooking, can be used to make something which is enjoyed by myself and others. The process of creating, and the end product itself are very important. Rarely in life do I enjoy the journey as much as the destination. With writing, and cooking however, I can say that the journey is at least half of the pleasure.

I have
<"Synesthesia">
This condition is neurological in nature. Synesthesia is the stimulation of one sense evoking the involuntary stimulation of another. I can "taste" words, "smell" music, and "see" the colors of days, weeks, months and years. When I read, I enjoy the very act of reading for not only the story's sake, but because reading plunges me into a colorful land of lush scents and powerful tastes.

I have at least ten different types of synesthesia. The one I talk about the most is Grapheme/Color synesthesia. I also experience Grapheme/Gustatory synesthesia. words, letters, and numbers all have their own unique texture, scent, color, and taste.
The letter "B" is kind of peachy colored, and very soft like old warn velvet. It smells fresh-- like spring-- but doesn't have a taste. The letter "Y" is very bright red in color, is kind of slimy (but not bad slimy more like fun slimy) and it tastes very strongly sweet. My least favorite letter is "U" because it is gray, rusty in texture, smells like decay and tastes like old pennies.
A word will most often be a blend of its component letters. So the word "May" is dark blueberry purple-blue for "M", light green for "A" and red for "Y." However the first one or two letters in a word tend to have the strongest influence over the word's general appearance, texture and taste. Because I don't like the letter "U" I really avoid words like ugly, understand, or umber. Even words like just or cure are not very attractive because the "U" is so close to the start of the word that it muddies the rest of the word. I almost gave Laveau a different name because of its final letter. However because her "U" comes at the end it is bearable-- most of the time.

Words can also have their own associations independent of their component letters. Take the word "Tuesday," it tastes strongly of oatmeal cream pies and is squishy and I like it very much. Even though it has a "U" I still love tuesdays and every time I say or read, or see the word Tuesday in ASL, I taste oatmeal cream pies. I am rather fond of oatmeal cream pies so this is a positive association. The word "Didactic" has the taste, texture and scent of green apples. Like the kind of apples which are so tart they make you pucker and your teeth hurt when you bite into them. The component letters of this word in no way suggest this association, and the word's definition itself has nothing to do with the way I experience it. It is truly a pity that I don't have a reason to use the word didactic more often, because it is one of my favorite words.

Sometimes I want to insert a particular word into a phrase not because it would be appropriate to use for the topic at hand, but because that word evokes such a strong synesthetic response relating to the topic I'm discussing.

Being a synesthete has strongly influenced the way I view the world. All of my senses are bound together and engaging in a hobby which most people would find boring, such as reading the dictionary, is for me, a fun and exciting experience. Just like I love to go shopping for new and unusual herbs or ingredients, I very much enjoy reading the dictionary to learn new words. I do it because I like expanding my vocabulary, spicing up my writing but also because the words themselves, are for me, works of art and I love experiencing them.

I could go into my kitchen, take a head of letups, chop it up, add some tomatoes, baby carrots, some celery and an onion. I could pour some Kraft Ranch Dressing over the whole thing and would have, what most folks would consider, a perfectly respectable salad.
I would much rather work with red spinach, baby Romaine, Nappa Cabbage, sun-dried tomatoes, red peppers, Greek olives, snow peas, red onion, and some lovely lemon basil Feta cheese topped off with a hand made gorgonzola dressing.
This is what I think a salad should be, made with care and skill.

Writing and reading are the same way. It is a craft-- an art form-- and something which should give as much pleasure to the writer as to the reader.

I can't explain what it is like to have synesthesia to someone who doesn't have it. All synesthetes will not experience letters, numbers, music and other stimuli inn a universal way. Each synesthetic experience is unique-- just like we are all unique. (and there goes that "U" again!)
For me, my synesthesia brings the world into sharper focus-- I imagine synesthesia is almost the same thing as experiencing movies in 3d.

It can also be very distracting sometimes. Especially if I learn a new word or phrase-- I can get so focused on "experiencing" that word that I tune everything else out and pay little attention to the actual meaning of said word or phrase. This got me into quite a bit of trouble in school as a kid. I could never explain why I would not understand new material sometimes. I didn't have a word for synesthesia and just assumed that everyone had the same sensory input going on in their head as I did.
I think it would be fun to write a book and include all of my favorite words. It probably would not make logical sense at all, but it sure would be wonderful to read.