Guris Thesis

I arrived at the Crowne Plaza Hotel in White Plains a little after 9, where the 56th annual convention of the National Federation of Blind (NFB) was being held this past weekend. When I entered the room the dramatic theme from Phantom of The Opera was playing. As part of the convention, a big group of the participants had gone to Broadway the night before to watch the show. Since I don't have any friends that are blind, I was curious of what this day had in store for me as I passed all the guests that had found their seats and folded their canes together or placed their guide dogs underneath their chairs.

Some of the topics that were on the list to be discussed this day was safety for blind pedestrians, how we can encourage more entrepreneurism amongst blind people and ensure that visually impaired people don't work for less than minimal wage. Carl Jacobsen, President of NFB called to order and introduced each guest speaker of the day. His wife, Mindy Jacobsen, chanted a welcome hymn out to the audience, led raffles and moderated discussions throughout the day. They are both blind and made the perfect hosting team throughout the convention.

I was struck by so many inspiring people this day, and will share a few of the things that left a big imprint.

Carl Jacobsen told a story from when New York got hit by superstorm Sandy a few weeks ago. More than 300 blind people lost their power, and Carl reached out to the government asking for help with food and fresh water. Help from this level did not seem to come together very soon, so he made calls to supermarkets and asked for deliveries of non-perishable food and fresh water that the blind people hadn't had access to in 3 days. He was fortunate that the chain manager of Food Town was on the line, and they agreed on a delivery of food worth of $1,500 to be distributed. When the driver came to deliver the food, people were so happy that they were crying. The guy from Food Town said to Carl: "I know that you want to pay for this, but I need to make a donation."

Ron Brown is the 2nd Vice President of NFB and a former beep ball player and world series coach. He speaks up for the unemployment issues and demands "real work for real wages". 300.000 people with disabilities are working for less than minimal wages in the US. And over 70% of blind people are unemployed. Through a program called "Vendor Shepherd" they encourage people to expand their horizons. Through the use of new innovative marketing and strategies for blind business people, they show people how to run a hotel and not just "candy stores".

Blind role models push the boundaries and take away excuses for what a blind person is capable of doing. Cassandra McNabb is one of those people. She was one of very few women in the South who decided to go to mortuary school. She is also blind. When she started studying, the teachers didn't know how to teach her. Cassandra knew she could perform the job, but she didn't know if anyone would believe her. She shared fascinating human body proportion facts and how she uses her hands to feel the shape and temperature to find the right veins to open. The day she performed the embalming exam and officially passed as a mortician, she knew that she had made history.

The main discussion this day was around training and building confidence. Shawn Mayo, Executive Director of Blindness Learning In New Dimensions pointed out that skills can be learned quickly, but that motivation and confidence is harder and takes longer time. She emitted a very positive attitude and the statement that becoming blind doesn't have to be a tragedy. Emily Gossiaux was sitting next to her and a living example. She was a Visual Arts major at Cooper Union, but had a terrible bike accident on her way to work 2 years ago. When she woke up at the hospital, it became clear that the accident had made her completely blind. She said she could handle all the broken bones, but she didn't know what to do about her blindness. Her biggest fear was that she couldn't finish her art major.

A long rehabilitation process and several operations later, Emily is able to walk again. She has done cane training at Visions and she moved to an apartment where she had to learn how to be independent. According to herself, she needed to be challenged to prove confidence. After she was introduced to other blind artists, she also learned how to look at art in a completely different way. She is now studying sculptural art and is interested in a career within art museum management. 

The misconceptions about what it's like to be blind, is what makes people hesitant to use canes. People who are experiencing vision loss, but refuse to do cane training, is more a subject to attitude training. The cane training is also an important step for people who want to get a guide dog. If you get lost with a cane, you will probably get lost with a dog as well. The skills you learn by travelling with a cane is a necessary foundation to get a dog. 

At the end of the day I had heard so many good stories backing up what was repeated a few times: "You're in control of your life, not the blindness controlling your life." The convention gave me a much better understanding of how blind people work to overcome challenges within our society. I was fascinated by how casual and conversational this convention was. People were moving around a lot, using their canes and hands to find empty seats. Not everyone cared about sitting up straight or even facing the stage. They were there to participate in the music, mishmash of voices and laughter.

On the first day of snow, I met with Karen Gourgey at Computer Center for Visually Impaired People (CCVIP) at Baruch College. The weather probably discouraged others from coming to the Open House that day, so I was fortunate and got to sit with Karen and talk for a while.

Karen is the education director at the CCVIP where they offer several programs for blind and visually impaired people. They teach how to use different applications such as Excel and Word, in addition to software that enables text-to-speech and devices that translate text to Braille.

A lot of the students at CCVIP are sponsored by the New York State Commission for the Blind and Visually Handicapped. The unemployment rate of blind people in the US is estimated to be around 70% and people with visual impairments are having a hard time getting jobs that match their skill level.

Karen was fortunate and was taught Braille while she was young. Fewer and fewer blind people know Braille today, and software that translates text to speech is key to the Braille illiterate. Karen pointed out how much easier this operation used to be with DOS and speech synthesizing character for character. The ratio between visual output and audio was 1:1. When the pixel was introduced, this changed.

Today, there are rules for how websites should be laid out to function with screen readers such as JAWS. However, a lot of people don’t follow these rules, and the content creates conflicts when it is processed by the reader software. One of the issues may be sites that refreshes themselves when an image changes, and so the reader resets to the upper left corner. The web hierarchy becomes very important since the software makes a list of all the headings to ease the navigation. Coming from a program where design of websites and applications often is a part of the deliverables, all though not taught directly, I was surprised that this isn’t something we have discussed in school at all.

After showing me the basics of JAWS, Karen wanted to see what the SVA website was like. The site was recently redesigned and has a grid structure with student and alumni work displayed. Unfortunately, it turned out that the images had no alt text, and every image was read out loud with their directory and pixel size instead. This is another major issue browsing the web as a blind person.

I started to get a better understanding of what this experience is like, even if I could only make sense of half of what the voice was reading on the screen. Karen had to slow down the speed several times. Tracing what was being read and what I could see on the screen, also turned out to be challenging, depending on how the websites were laid out. Another really great thing about CCVIP is that they offer usability testing of websites.

A Talking Tactile Tablet that Karen had on her desk led us to discuss how tactile displays can help to build mental pictures. The machine is a touch sensitive screen where sheets with tactile print is laid on top and calibrated with the sensors in the tablet. The sheet she had on display corresponded to a textbook in statistics, but maps and games are also popular to use with this device. It is connected to a computer that reads where your finger touches and gives information according to that.

Tactile displays can be helpful to explain math models and metaphors, but Karen pointed out the difference between someone who is born blind and someone who lost their vision but still relies on some visual memory. If you are born blind you can’t just put your hand on something and understand what it is. Metaphors such as the spreadsheet, can be hard to grasp for someone who was born blind. It takes time to build that image.

Karen showed me her Braille keyboard that she uses every day, separately from her computer. As with the computer keyboard, her fingers ran across the six keys on the Braille board at an incredible speed. You can choose to either listen to what you type, or have it displayed in the metal Braille display. Karen told me how beautiful she found this particular Braille display. When I asked her how much it cost I was shocked to hear that it was twice as expensive as my MacBook Pro.

Before I left, Karen wanted to give me an index card with my name in Braille. She first showed me the “old school” stylus where you lock a piece of paper in a metal grid and punch holes through the paper with a needle-like device. She also showed me a retro looking green braille writer that works the same way as a type writer, except that the keyboard has six keys.

The word blindness conjures an image of a world engulfed in black; one from which there is no escape, but most blindness is not always blackness, but sometimes it is loss of visual perception.  For example, put your hand behind your head.  Your hand doesn’t appear in your vision; you can’t perceive it.  Many types of blindness are “lack of perception” blindness.  If you have glaucoma, macular degeneration or a host of other retinal diseases or genetic causes of retinal blindness, you lose the ability to perceive – the object does not appear in your visual field, like the hand behind your head. It’s not “blackness” as blindness is commonly understood to be.

“Blackness” type blindness happens when one of the forward sitting optical elements of the eye becomes opacified, causing light to not be able to enter the eye.  The most common causes of this type of blindness occurs when the cornea, or domed front surface of the eye is injured by trauma, chemical burns, parasitic or bacterial infection or genetic defect.

This past Friday I went to Dialog in The Dark to get a better understanding of what it’s like to be blind in New York City. To try this in a safe environment, the audience goes through four rooms that are created to represent different spaces in New York. This involves cobblestones and fountains in Central Park, grocery shopping, a subway ride and the traffic madness at Times Square.

My first reaction when they dimmed the lights down was panic. I wasn’t sure if I would be able to go through the experience without the sensory input that I’m relying on the most in my daily life. I was scared, but a very mirthful guy named Kerry came to introduce himself as our guide and told us to just follow his voice. Kerry gradually lost his vision when he was 18 years old and have been blind for 30 years now.

The tour involved soundtracks of the different environments, smells and lots of objects or surfaces that helped us navigate. We use our mental memory of objects and situations to interpret the exhibition, but I was surprised by how exhausting this was. I spent a great amount of energy compensating with my other senses and in my brain trying to create an understanding of my surroundings. And still, this was in a constructed environment without true dangers.

Kerry still relies on his mental memory from when he could see, but adjusting to the dark was very challenging for him at the time it happened. There are so many new things to learn and ways that you need to restructure your life. Somehow I imagine that your brain must create more connections and that the amplified input from other senses may help you evolve in directions you wouldn’t have otherwise. But it is not hard to understand that people struggle with accepting the change and become depressed.