What I want to Remember
By Ann Chiappetta

I lost my sight at the age of 28, and resigned from my job because of it. I worked as a designer for an acrylic furniture company and could no longer perform my job duties, which were all visual in nature. I mourned this part of my life more than any other because I didn’t know how to take all the creative energy and transfer it into something else. One night, out of sheer frustration, I began to write. First it was poetry, most of it fanciful and meaningless. This turned into journaling and short stories, which led to some successful small press literary magazines publishing my work. It wasn’t until much later, when I was in college, that I realized I’d made the transition from expressing myself with the visual arts to those of the literary kind. From this point, I resolved to develop my talent because I knew it would become an essential part of learning how to successfully live with a disability.

What I didn’t realize back then was that re-training my mind was the cornerstone of the transition into blindness. I will always remember what life was like before it and I am grateful that I do have the visual references of the first 26 years of my life to help me go forward.

Images have a way of tattooing themselves to the psyche. If they are referenced enough, one will never forget them. All writers use this sensory recall as an essential tool to enhance the craft. What I didn’t know at the time was that developing it would one day help me deal with losing my sight.
I call this my soul sense, and it incorporates personal visual experiences with other sensory skills, like touch, sound, smell, and taste.

For instance, when I hear a jet plane, my mind cues up the image; when someone points out a beautiful sunset, I recall one. I use the power of observation to keep the memories close, that way I will never be without a reference.

Of course there will be surprises, like when I expected the Napa leather bag to be black or brown and the sales clerk told me it was electric blue. I’d never seen electric blue leather bags, so it took me a moment to put the image and the color together in my mind.

Blindness is a way of being, a distinct circumstance in which a person learns how to navigate through life. To ignore it means we are ignoring ourselves and denying the personal growth to cope with the emotional nature of living without it.

Retinal degeneration has made my world monochromatic. I do, however, remember the colors I can no longer detect. In my mind’s eye, the flat grey and black bushes dotted with stark white blobs are blooming forsythias lining the sidewalk. The vivid yellow flowers and light green leaves under the blue sky are only memories.

Does this sadden me? Frustrate me? It used to but not now. It happened so gradually that I had time to adjust. I already knew what forsythia looked like so for me, even when the color blindness began, the reference guide in my head kept me from feeling like I was missing out on something.

Retinal degeneration has also rendered me night blind. Since I was about ten years old, the lack of any form of light filled me with anxiety. It made me feel so helpless. Now, however, I do my best to face the dark with courage, though I don’t always succeed.

If I could impress just one piece of advice upon a young visually impaired person I would tell them to never give up, learn Braille, mobility skills, and trust themselves to know when to ask for help. I would ask this young person to remember the golden rule of true Independence: know when and how to ask others for help to achieve it. We are, after all, interdependent, learning how and when to ask for assistance will open doors and prevent social isolation.

What I miss seeing the most: faces of those I love. What I don’t miss: the ugliness of suffering and violence.

What advice to I have for someone who is progressing into blindness? Do the best to let your mind file away what you want to remember visually.
If you’ve seen a breathtaking view of the Grand Canyon, even if it was only a photo, when you are actually standing at the rim, it won’t really matter. You will be smelling, tasting, and listening to the majesty of that wondrous place. Your soul sense will aid in the expansion and creation of new memories.
Ask yourself what you want to remember and make it happen.

Explore, ask questions, and refine your skills for those times you will need them most.

The Second Year: a retrospective in dog guide land

I give the forward command and we begin to cross the street; I hear the car lurch from its place ahead just as Verona walks us out into the cross walk. She stops as the car makes an erratic right on red even though we have the right of way.
“Good dog, “I say, then give the forward command again, and we step out a second time.
The car behind the car that just lurched around the corner on the red decides to do the same and Verona not only stops but backs us up to the curb and does her little dance. I know this dance, it means, “mom, don’t go, we’re in trouble.”

A year ago I didn’t know this signal and felt the whap of a concrete bench on my knee even though she tried to tell me not to take another step. She did her dance then and after that incident, I pay attention to it.
“Okay, Ro, let’s wait a bit,” I tell her and line us up again at the curb. She tries to take me to the perpendicular curb but I tell her no, we need to go this way and she complies reluctantly.

This is where humans and dogs digress in terms of thinking; I know it will most likely be safe this time but she is thinking, wow, it’s going to happen again, and we better get out of here. This is when our mutual trust comes into play and although it seems like we’ll never get across this street, we do it together and do it safely. As we step onto the up- curb, I praise her for being such a great dog by giving her a doggie snack and petting, and we move on to go get lunch.
January 4, 2011 was our second anniversary, what guide dog users call ‘dog day’. I’ve written poems and short essays about this and other aspects of being a first-time guide dog user and this month means we’ve made it past the first two years and our bond is solid and reliable. Verona, whom I now call ro, is a four year old black Labrador retriever weighing in at 60 lbs and about 23” at the shoulder. She is a serious worker but she is also a very playful dog when not in harness. Her ears are too big for her long, wide head and her tail is a rudder like weapon when she’s wagging, which is just about all the time out of harness. She has happy pants syndrome, a constantly swishing rear-end and it hurts if you happen to be in the line of fire of her tail.

But, who, exactly is Verona – and perhaps more importantly, why is she, and other service dogs like her so special?

Her history is fairly typical for a program trained dog: she was a planned birth, her litter the result of Cooper, a black Labrador male, and Eileen, a yellow Labrador female. She is the second of five puppies born on November 24, 2006 at the Guiding Eyes breeding facility in Patterson, New York. At 10 weeks, she was given to her puppy raiser, Carol, who taught her good manners and social skills. At 18 months, she moved from New Hampshire to Yorktown Heights, New York to be proofed for advanced training. She and Carol said goodbye until graduation. Upon passing the test, Verona and her siblings began training for guide dog work.

She lived in the kennel with her buddy, Sawyer, another yellow Labrador until January 2009, when she and I met for the first time. The moment I touched her, it seemed as if the entire time of struggling with vision loss finally held meaning. For the first time, blindness held promise instead of limitations and let downs.

Fast forward a bit, and after years of avoiding events and independent travel, I’m no longer so limited, thanks to Ro and Guiding Eyes for the Blind. I now go wherever I need to with confidence and a safe way to accomplish it.

Ro is more than just a mobility tool, she’s a co-therapist. We’ve visited a local children’s hospital wherein we helped the social worker to ease a nervous teen who was having trouble adjusting to his new environment. She was often the reward for a group of unruly teens as incentive to settle down and work in a group. If they did well, I’d take off her harness and happy pants would take over and relax all of them. We visited our sick friends and recovering clients in hospitals and nursing homes, too. She is now my co-therapist at my new job helping Veterans with disabilities.

Happy Anniversary, Verona, and May your butt always wag so happily.
I love you.

Well, don’t know how it happened but I’ve been nursing a sore elbow and hand. Woke up a few days ago and noticed it hurt to bend my elbow and it worsened to not being able to even hold anything in my hand. So, took Advil and slathered on Tiger Balm and figured the weekend would help ease the pain if I rested it. It’s Sunday and as you can tell by my posting, I’m still typing. Not the end of the world but the pain and the limitations are just so frustrating. I’m already blind, what more do I need? Gripe, gripe.

At least I got my nails done and my feet prettied up at the salon today. That made me feel much better.

I’m certain my sighted friends and family have wondered how I deal with disability discrimination when it occurs. For the most part, situations present themselves and then rectify themselves without much effort on my part once I call attention to it. Occasionally, however, a situation presents an ongoing and frustrating set of circumstances, like the one I will describe below.

Last month, after starting a new job counseling in a community based mental health clinic, it was recommended that I read a specific book. This book was provided free of charge to our clients, their families and mental health professionals at the clinic. Since I couldn’t read the book in the current format available, (printed material), I contacted the publisher and the author asking for a reasonable accommodation. Specifically, I asked if there was a chance a recorded version could be made and in the interim, perhaps I could be sent the text files of the book so I could read it with my equipment.

In short, the foundation who funded the publication of the book said no and they would not consider a recorded version due to the fact that only one other person asked for it to be recorded. The co-authors asserted that they would not agree to offer the text files as an alternative, stating “…We will not release our text files for individual use.”, which is a form of discrimination if the person asking for an alternative format can prove he/she cannot access the primary materials in the current format. A publisher must, under ADA policy, offer an alternative if one is requested

As it stands, I’ve sent the letter and don’t really know what to do next. I could let it go, but these folks need to know that refusing my request is unacceptable.
Anyway, read on and remember the last line whenever you’re faced with an uncompromising attitude.

To All Concerned;

Let me preface this by stating that I am also a writer and would not allow unauthorized individuals to exploit any of my own work. But I am not attempting to do that with my request. I’m only trying to obtain “equal” access to this particular book. I hope you can appreciate my perspective as I’ve acknowledged yours. I respect and admire the sacrifices undertaken to create and distribute this book and that is why I’m writing this letter. Your book is an essential and valuable tool for ****s, their families, and the general public and should be available to everyone, not just those with vision.

Going forward, what follows this introduction typifies the struggles I face living in a sighted world. I would ask you all to put yourself in my shoes. I am a mental health professional who happens to be blind, assisting combat ****s and their families, some of these ***s may also be blind or visually impaired. I require access to this book in order to help them. I have reached out; put my disability in the forefront in hopes of achieving the goal of finding a cooperative attitude regarding my legitimate request. Imagine my surprise when I’m informed that my request is not going to be granted even though it is the law.

But, let’s go back to my original suggestion, that providing the computer generated text files would be more accessible and most likely cost little or nothing but a few clicks on a mouse in a word processing program and one or two compact discs. If I am wrong, please tell me.
What cost or copyright risk would it be to just send a text file via email? Or burn the text based files onto a disc? I’d pay for the disc and mailing costs just like a regular print book and it would not infringe on the author’s copyright because it’s for my personal use. For proof of this, go to Amazon.com or Barnes & Noble.com and look at the eBooks just waiting for distribution. Publishers and authors alike seem to have no trouble with releasing books in alternative formats. Additionally, you would be in control of what goes on the disc, including your copyright and the ISBN number, which is your protection from unauthorized distribution of the disc. It is the same as a hard copy book, just in an electronic format.

Incidentally, what would stop a person with your hard copy book from scanning it and making copies for others? Isn’t that what you mean by limiting access to your files?
Going one step further, the entire book could be scanned saved and distributed electronically for people with print disabilities without being a copyright infringement. Just go to www.bookshare.com. What would that cost?

My next thought was, do I need to quote ADA Code and access Laws to obtain equal access to your book? Would you turn away a **** requesting the same consideration?
I think you need to think about your decisions and what they mean to someone like me.
What if I was a disabled **** who could no longer see print? Would I be unable to access your book, which, by the way, was meant for ****s and professionals assisting them? Is the fact that I am blind the single remaining factor in not being able to read your book? If the answer is yes, then that is against ADA policy and a form of discrimination.

“Sorry, we can’t do that.” Just isn’t good enough.

You see, from my line of thought, I don’t believe, even without quoting ADA law, that you can remain a barrier to my request. It would be really disappointing to know that something I know is available to only those with sight is not available to me just because I’m blind.

It’s been 20 years since the passing of the Americans with Disabilities Act and yet there is a barrier where one would least expect it. I hope you reconsider your hesitation, and, I will send you the internet links to whatever ADA documents you request about literature for the blind and physically handicapped, once I gather the information.

Sometimes the most difficult barrier isn’t a curb or a set of stairs, it’s an attitude.

Sincerely,

Ann Chiappetta

The Booty Dilemma
By Ann Chiappetta
Inspired by Verona, the guide dog
November 2010

Yes, it’s that time of year again, so dust off those fleece lined boots and air out your winter coats, gloves and hats. Don’t forget the lip balm and sunglasses for chapped skin and snow glare.

While we’re on the subject of winter accoutrements for the two-footed species, being a dog owner and most importantly, a guide dog handler, I am reminded to make sure Verona has her winter outerwear as well.

The type of doggie gear I am referring to is the dreaded booties. I don’t think any dog likes them, but rather, dogs tolerate them. Some dogs refuse to wear them. Verona, thankfully, is putting up with them, preferring them to the ice crusting between her toes. Brrr, sounds uncomfortable, right? So, then why do dogs dislike booties? Why, if they are above the grade in intelligence because they are guide dogs, can’t they at least embrace the booties?

This is what I say to Verona when she assumes a defeated posture whenever I bring out her footwear and ask for a paw.
First, the tail drops, then the head droops and the ears hang low, and finally, dejectedly, she picks up her foot and turns her head away from me as if to say she is philosophically opposed to her pretty, insulated red booties. I tell her that I love the fact that her red footwear matches my red coat, and, isn’t that great? She tells me she isn’t moved by my cajoling by keeping her head turned away and sighing.

If that isn’t bad enough, she assumes the duck walk, which is very humiliating for a dignified Labrador. I realized how much she disliked her booties by the mere fact that she will not take the proffered treat after a paw insertion. Thankfully, after ten minutes or so, the duck walk becomes a prance and the tail and head return to almost normal as we tromp outside into the cold, wet, salt sprinkled weather,
“It’s better than cold feet, right?”
I say to her as the wind whips past my collar and stings my face and cheeks. She shakes and I wish I could read her thoughts. My mothering instincts know that her ears are getting colder by the minute. I wonder if someone has considered inventing doggie ear muffs, and if I could get her to wear them.