I Am Going to be a Transformer or Bionic Women Some Day

I came across an article in Wired Magazine online titled "Vision Quest: Futuristic Fixes That Could Help the Blind See Again." This article struck me as interesting because for some time now I have been referring to myself as a "transformer" because of all the gadgets and accessibility tools that I use on a daily basis. Now, it looks like that just might be a reality someday. Read the article for yourself and let me know what you think.

Vision Quest: Futuristic Fixes That Could Help the Blind See Again.

A Real Ally

I love to read. Unfortunately as my vision has diminished, this once pleasure has become a time consuming and frustrating process. I thought that Audible.com was going to be my savior until I realized that not all books are available in audio/mp3 form. The irony is that many seminal works about vision loss, its medical and emotional effects as well as inspirational stories are not in audio form.  Many reading services for the blind often require you to order a device or cassette player from them in order to listen to the recordings. I find the screen readers to be distracting and hard to comprehend. These are in no way portable situations. I am a 21^st century person with a visual impairment and I want 21^st century access.

Recently, a friend of mine (also visually impaired) casually mentioned the audio book provider Learning Ally to me. I immediately checked it out and was blown away. I wondered what rock I had been living under that I did not know about this! One possible explanation for my ignorance could be that it is marketed to individuals with learning disabilities like dyslexia and not the visually impaired. Therefore, I never came across it in my searches. Nevertheless, I think it would be very helpful to people with a wide range of visual impairments. They offer a nice selection of textbooks, classics and new releases. The cost is $99.00 for a year’s subscription. There is an app for the iPhone and iPad so that you can take your books with you on the go. The one time cost for the app is $25.00.  On the surface, this may seem costly. But when you take into consideration that this includes unlimited downloads of textbooks that cost upwards of $100 - $200 each, Learning Ally starts to pay for itself.

There are a few things to keep in mind about Learning Ally.   The registration process was not the easiest I have ever experienced. The website is sometimes confusing and my husband (who is fairly tech savvy) and I had a difficult time downloading the software to my Mac computer. We had to reach out to the customer service department, which is only available Monday thru Friday. Learning Ally requires verification of your disability, so you will have to provide an email address of a doctor or rehab counselor. Despite these factors, I am encouraged by the portability, the wide selection of books and the human voices that read them. 

The Power of the Pen

The Livescribe Smartpen is great note-taking tool for students with a variety of learning disabilities. In addition, I think it would also be useful for students with low vision (20/70 – 20/200). The Smartpen not only functions as a regular pen but also simultaneously records the professor’s lecture as you write. Your notes are synced with the lecture so that when you tap on any part of your notes, the pen will play back that portion of the lecture. You need to purchase special notebooks to work with the Livescribe Smartpen because the controls for operating the Smartpen are at the bottom of the page of these notebooks. The Smartpen is compatible with both Mac and PC. You do need to be somewhat tech savvy to set up the Smartpen and to learn to use the Smartpen most effectively. Most users reported slight difficulty with set-up, but said once they were past the set-up; they quickly were won over by the Smartpen’s efficiency. Depending on whether you decide to purchase the 4 GB or 8 GB Smartpen, the price will range from $140 - $150 (US dollars) at retailers like Amazon.com. Check out the video demonstration of the Livescribe Smartpen.

Another useful tool for people who are legally blind or blind (20/200 - no functional vision) is the Pen Friend. This British company's devise looks like a large pen but it does not actually write. It is a recording devise good for labeling files, objects, medication, CDs and more. The Pen Friend comes with well over 100 sticker dots (about the size of a dime) that have bar codes embedded in them. You place a sticker on the object you wish to label and hold the Pen Friend atop the sticker and press the record button. Speak and the Pen records the name and any other instructions you wish to include. Any time you place the Pen Friend over that sticker, the Pen Friend will play back your recording. Uses I have found for the Pen Friend include: labeling spices with recipes, CDs, files containing important documents, medications, electronic devises for which instructions are needed and clothes and shoes of similar colors. The Pen Friend is fairly inexpensive compared to other products on the market for the visually impaired and the stickers are cheap enough that you can afford to place them on some objects you may eventually throw away. The Pen Friend will costs approximately $140 (US dollars) and comes with 127 sticker (variety of shapes and sizes) and over 70 hours of recording time available on 1 GB internal memory. In my opinion, you do not need to be tech savvy in order to operate this devise. Check out the video demonstration of the Pen Friend.

Channeling Andy Rooney

You know what burns me? The exorbitant cost of assistive technology for the visually impaired. I recently had to replace my 15-year-old CCTV.  I optimistically thought that over the last 2 decades the cost would have surely gone down significantly and the devices would be smaller. Oh was I in for a surprise! The price has not decreased relatively. CCTVs cost anywhere from $3,000 to $5,000 (depending on how outdated the monitor is) for the same technology that was not revolutionary 15 years ago! I have to have this machine. It allows me to stay viably employed, competent and competitive. Considering that, you might think that the price is justifiable. But my iPad is equally if not more assistive in certain circumstances (because of portability) than my CCTV, plus it does not make me feel like a transformer. And, it only cost $750.  Why do CCTVs like Merlins, Graduates, Clearviews and Jenny Pros cost so much?

I think I know the answer to my own question. Many people ordering and receiving these devices are doing so through financial assistance they receive from government and nonprofit agencies. Vendors know the government and agencies will pay inflated prices (just take a gander at healthcare). Therefore, the price is artificially high.

Let it be said, I have no beef with people with disabilities receiving aid from the government. My issue is, what about the little guy (or girl) who works full time for peanuts and makes a few peanuts above what it takes to qualify for any assistance? What happens when he or she has to replace this artificially overpriced, outdated technological piece of equipment that is the size and weight of a small tank with his or her own peanuts? Can’t we do better? Either the technology needs to wow me or the price needs to be commensurate with the (low) technology. It’s a video camera, for crying out loud! This is not military grade technology. There is no Navy Seal in Pakistan tracking terrorists and globally positioning predator drones using a CCTV. 

Furthermore, these cameras come on just about every cell phone these days. Buying a CCTV makes me feel like I am getting a cordless phone from the 1980’s for the price of an iPhone.

I have noticed in my search for aid - technological or otherwise - that there is a well-meaning attitude that reinforces old and insidious views about persons with disabilities that unwittingly degrades us: that people with disabilities should be grateful for whatever we get even when it’s unfair, substandard and doesn’t take into consideration our dignity. Well, as long as I am footing the bill, I am going to demand better. And frankly, in the interest of their budgets, government agencies and nonprofit agencies  should demand better technology or prices too. 

Words That Hurt Like Sticks and Stones

I am a sensitive person. I admit it. I really listen to what people say and sometimes what they do not. As a person with a disability, I am especially sensitive about issues surrounding my visual impairment. Acceptance and coming to terms with vision loss happens interpersonally and intra-personally. Many of the ideas I have about what it means to be “disabled” and to lose my vision are inevitably informed by the way society views people who are visually impaired or blind. I do not live in a vacuum. I have met plenty of people who say they are not concerned or are not hindered at all by what people think and to them I say good for you. I am not there yet. For example, I am deeply disturbed by the way people use the term “blind” and the associations they invariably create. In literature dating back to ancient times, the term "blind" has had a negative connotation and is quite frequently still synonymous with foolishness, ignorance or the inability to “see” or understand something that is apparent to everyone else who is wiser and more intelligent. Take for instance the story in the Bible (John 9) of Jesus healing the blind man. It is a metaphor for someone “seeing the light of truth” for the first time. Ponder the following quotes and the contexts in which they are used.

“The blind leading the blind." Or “If the blind lead the blind, both shall fall into the ditch.” Jesus in Matthew, 15:14

“Hate and mistrust are the children of blindness." William Watson Now I know that I do not have perfect vision and there are things I do not see. However, the results of my last IQ test suggest I have no problems in the intelligence department. Therefore I am bothered by the connection made in many everyday quotes between the mental capabilities of the brain and blindness. If you do not think that this subtext sinks into our society, just follow a blind person for a day. Count how many times someone speaks slower or louder to them or insults their intelligence. Watch how they are infantilized and robbed of their independence and dignity simply because the person’s eyes do not function optimally. I work as a high school teacher. Daily I observe how the opinions and ideas of young people are shaped. Young people are not born with prejudice and stereotypes but are taught these things. Rarely does it happen with an earth shaking realization but a slow exposure to and a steady diet of information, modeling and reinforcement. I am not asking for a complete abandonment of symbolism and metaphor in literature and the vernacular, but rather awareness about the messages we are sending about persons with disabilities through common speech. Speech conveys values. I would like for my visual impairment to be seen as something that makes me unique; a part of this diversity on this planet. I would like for people to have an open mind about my abilities and fewer assumptions. Losing vision is difficult enough but dealing with the ignorance of others about vision loss can sometimes be tougher. 

"There's none so blind as those who will not listen.” Neil Gaiman

“To crooked eyes truth may wear a wry face”  J.R.R. Tolkien

“In the valley of the blind, the one-eyed man is king.” “ August Wilson,

Double Vision

In my opinion the point of recreation is to rejuvenate, to have fun, loosen up and engage in physical activity. Recreation is essential to sanity and a good quality of life. Finding recreational opportunities when you are visually impaired is challenging. Often what a fully sighted person finds easy and mindless- throwing a ball into a basket or tossing a Frisbee around, a visually impaired person might find stressful and the opposite of relaxing. I often find myself in this position. For example, I love to bike. Now granted as my vision has worsened and I moved to New York, biking solo became a terrifying and life threatening activity. Not relaxing. But never fear, when it comes to biking I have found a solution- tandem biking!  The ideal (least stressful) way to tandem bike is with a sighted person in the front seat and the visually impaired person in the back. Both riders pedal, therefore everyone gets a work out.

In New York City, there are many places to rent bikes and most of these places rent tandem bikes as well.  My favorite place to tandem bike is Governor’s Island.  But here are several other places:

Central Park

Riverside Park

Battery Park

East River Park

If you want to take your tandem biking to another level, there exists a Tandem Club of America  which hosts bike rides all over the US. A list of their upcoming events can be found on their website. Many of their rides end with potlucks, apple picking and other really cool activities. They are open to persons with visual impairments. You will need to provide your own bike for these rides.

The Lighthouse International is hosting a fundraiser and event for the visually impaired called Double Up 4 Vision 5K Bike Ride. It is scheduled for October 22, 2011 at Riverside Park, NYC at  10:00 AM. 

There are other organizations like, Cycle for Sight which offer biking events all over the US and Canada specifically for the visually impaired. These groups raise awareness and money for research. There is a yearly Cycle for Sight event in Lancaster, NY. Look for the Cycle for Sight event in your area.

Grab a helmet and some biking shorts (preferably the padded ones if you haven’t biked much) and go recreate yourself! Happy Cycling!

Being Visually Impaired is Stressful! Meditation Can Help

Being visually impaired can be very stressful! There is no escaping it sometimes.  As soon as my eyes open in the morning I am plotting, assessing, calculating and evaluating my to do list for the day. Daily tasks like turning something on or off, plugging an appliance in, walking up or down stairs, pouring the coffee in the cup and not on the counter, distinguishing between blue and black,  finding an  item camouflaged by the floor all require intense focus and energy and often result in frustration. And the day has just begun! The real stress awaits me outside.  If I am not careful this can consume me and rob me of any joy in life. I am constantly looking for things to reduce the anxiety and frustration that seems to come with being legally blind.  A couple of years ago I took a beginner meditation class at the Shambhala Center in NYC. I was immediately hooked. I would start by visualizing all of my anxiety and fear as a ball floating in the palm of my hand. Once the "ball" was outside of me, I turned my attention to my breathing. I feel free and weightless when I am meditating.

There is no mystery here. People have been touting the benefits of meditation for centuries. I recently read an article in  Psychology Today which explained it best. 

"Neuroscientists have found that meditators shift their brain activity to different areas of the cortex - brain waves in the stress-prone right frontal cortex move to the calmer left frontal cortex. This mental shift decreases to negative effects of stress, mild depression and anxiety. There is also less activity in the amygdala, where the brain processes fear." 

Need I say more? So give it a try. And more than once if you can. What have you got to lose except the stress?!? And hey...it's cheaper than therapy!