Commentary: Is Blindness Really That Scary?

According to a recent survey, most Americans fear blindness. In fact, they fear it more than losing their hearing, speech, a limb or their memory. Nearly 88 percent of people surveyed considered having 20/20 vision vital to good overall health, while 47 percent believed that losing their sight would have the gravest effect on their daily lives. Loss of independence and quality of life were the top concerns for respondents. Over 60 percent were aware of common eye conditions like cataracts and glaucoma.

I have been blind practically all my life, so naturally, my first reaction would be to say that blindness is not as scary as it seems. Growing up as someone who is blind, I have no concept of what it is like to be able to see, and therefore I have successfully adapted to living without sight. Nevertheless, I realize how significant good vision is on people’s everyday lives – if anything, it is the sense used the most by human beings. I lost my sight as a toddler, but I am sure I would have had a much harder time adapting had I lost it as a teenager or adult, for instance.

I think the main reason why most people are so afraid of blindness is because of the tremendous lack of awareness about different ways to cope with vision loss. Today more than ever before, numerous resources and equipment are available to help individuals with vision loss live happy and rich lives. Organizations like The Chicago Lighthouse offer a wide array of programs, services and technologies that allow people with varying levels of vision loss to remain independent. Furthermore, research is constantly being done to both find cures for eye disease, and to help those affected by low vision to better live with their visual impairment.

These findings are not new or surprising – living in darkness is a natural fear humans have had for centuries. This survey only underscores the importance of doing further research on eye diseases, as well as providing more services and resources for people living with vision loss. Unfortunately, many individuals will have to confront this fear in the near future, because the number of people with vision loss in the United States is expected to double by 2050. Although not all forms of vision loss can be prevented or avoided, people can start by taking a few simple steps that will help them keep their eyes healthy in the long run.

For me, losing my memory or being diagnosed with cancer are my worst fears. As someone who has successfully adapted to vision loss, I know all too well that there are far worse things than being blind or having a disability for that matter. There’s no doubt that blindness can present challenges and inconveniences in our everyday lives, but thanks to the countless services and resources available in the United States, it is possible for people with vision loss – like me – to lead equally fulfilling lives. Most of the fears and misconceptions about blindness and visual impairments are surmountable, and we should all work to help people understand that losing one’s sight does not have to mean losing independence.

How Can People Who Are Blind or Visually Impaired Tell Different Things Apart?

How Can People Who Are Blind or Visually Impaired Tell Different Things Apart?

I recently came across an article about Braille labels being added to beer bottles in Japan. It brought up one of the questions I often get – how do people who are blind or visually impaired tell everyday things apart without being able to see. With most things having labels only in print, we have to come up with other tips and tricks to keep them organized. Labeling and organizing methods are endless, and these are just a few suggestions to get started.

Keeping things organized

More often than not, I can tell different items apart simply by keeping them organized and in different places. Of course, I first find out what they are  from someone else when grocery shopping. I know, for example, that the cereal boxes are on one shelf of the pantry, and crackers, canned food, etc. are on another. The shape and size of different packages also helps – a can of soup feels very different from a bottle of dressing. Simple things like listening to the sounds of each product also help. Shaking a box of uncooked pasta sounds very different from a box of cereal bars.

Labeling with easy to find household items

There are times when I inevitably have to label things that feel or look identical. Often, using things like tape, rubber bands, paper clips or safety pins helps. Food cans are often identical, and I have to label them as soon as I know what they are. By putting a rubber band around a can of soup, I can tell it apart from a can of vegetables. Using rubber bands on medication bottles is also very helpful when organizing them. Putting safety pins on clothing tags helps me know what color it is. This post gives more information about organizing and matching clothes as someone who can’t see.

Using Braille or large print labels

Labeling things like important documents, CDs, DVDs, etc. can be done with Braille and large print labels. The Chicago Lighthouse’s Tools for Living Store sells a variety of labeling materials ranging from special Braille labeling paper to large print stickers. Generally, I like to label things like folders, binders, CD and DVD cases in Braille. There are also other products for people who are unable to read Braille. The bump dot tactile stickers, also sold by the Tools for Living Store, are a great option for microwaves, stoves, computer keyboards and other electronics. These are sold in a variety of colors and sizes.

Assistive technology devices

There are a variety of “high tech” devices that can help people with vision loss label things and stay organized. The Talking RX Pill Bottle Recorder is a great tool for labeling medications. Other devices, like the PenFriend Voice Labeling System, can be a good alternative for organizing CD and DVD collections, medications, important documents and so on. Similar assistive devices and smartphone apps are constantly being developed.

You can see these and other products offered at the store here. For more tips on how to label and organize household items as someone with vision loss, visit this site from the American Foundation for the Blind. What other labeling methods have you found helpful as someone who is blind or visually impaired? Please share any suggestions with our readers!

Commentary: Including Voters with Disabilities in the Election Process

Voters with disabilities are projected to play a significant role in the 2016 presidential elections, or so a recent report indicates. Researchers at the Rutgers School of Management estimate that 35.6 million individuals with disabilities will be eligible to vote by November 2016. On the other hand, only 28.7 million African Americans and 29.5 Latinos will be eligible. The number increases to 62.7 million when taking into account families, caregivers and anyone affected by disability matters.

Around 56 million people in the United States have a disability, and many go as far as describing us as the largest minority in the United States. This new report about voters with disabilities suggests that such description might be right. People with disabilities are everywhere, and we also want our voice to be heard. The reality is that we are all prone to becoming disabled, and more attention should be given to this group by politicians. Access to better health care, more employment opportunities and accessible housing are just some of the topics of concern to the millions of Americans living with, or caring for, someone with a disability.

The number of eligible voters with disabilities is without a doubt significant, but it leads me to wonder how many will actually cast their ballots independently? Laws like the Americans with Disabilities Act and Help America Vote Act insure that everyone has equal access to polling places and voting equipment. Unfortunately, many Americans with disabilities are still unintentionally excluded from the election process. Polling places might be inaccessible to wheelchair users, or staff is unaware about how to operate the special equipment that can help those with vision loss vote independently. More attention should be given to the difficulties voters with disabilities encounter.

These and other issues should be brought to light by the media. More often than not, media places a lot of emphasis on topics of concern to minority groups like Latinos and African-Americans, but not much is said about those who have or know someone with a disability. This, I think, is partly why the general public often overlooks this group. Challenges faced by all minorities are important, and those encountered by people with disabilities are not the exception. Not only can exposing these important issues shed light about the things that affect us the most, but it will also help everyone become better informed and elect the best candidates.

What pressing issues do you have as a person with a disability? Do you think the media and politicians in general need to pay more attention to these concerns? Please share your thoughts! Stay tuned to Sandy’s View, where we will discuss how people who are blind or visually impaired can vote independently in the upcoming elections.

Becoming ‘Aware’ of Your Surroundings Through Modern Technology

Becoming ‘Aware’ of Your Surroundings Through Modern Technology

Going on my own to unfamiliar places has always been one of my biggest challenges. People with sight can easily scope out an area and figure out where things are, but this is not always the case for someone who can’t see. New assistive technology is being developed that will make it easier for us to navigate independently when out and about. The Aware app, made by Sensible Innovations, is one such technology. We at The Chicago Lighthouse are currently involved in a pilot project testing the app, and I recently got a chance to see how it works!

Background

The Aware App was developed by Sensible Innovations of Springfield, IL. Rasha Said is the company’s founder and CEO, and she was inspired to develop the app by her son, who is legally blind. Said saw her son’s need to know what was around him in unfamiliar places, and realized that millions of individuals worldwide with vision loss could also benefit from the emerging technology.

How It Works

Using Apple’s iBeacon technology and the Aware iOS or Android mobile app, users get verbal information and directions to different locations in a building. The iBeacons, which are installed throughout different areas of a facility, transmit information via Bluetooth to a user’s phone. The app then announces the places as users approach them. It will also give directions and guide them to different locations.

The Aware app uses information and navigation beacons. Navigation beacons give directions to different places in a building. Users can choose a desired location in the app’s directory (a feature I particularly like,) and once selected, the app will guide the person there. At The Lighthouse, it can give me directions from the lobby to the cafeteria and vice versa. Information beacons give more specific details, such as the description of a room’s layout. When in The Lighthouse lobby, for example, the app announces where the information desk and seating areas are. These beacons can also read things like restaurant menus and items in vending machines.

Beacon information for each building is managed through an online portal. The website, which is also accessible to assistive technology users, allows those in charge of configuring the beacons to add or update information as needed. This can be useful when making a correction or updating the description of a room’s layout, for instance. The portal can be accessed at any time of day, and information can always be updated.

My Thoughts about the App

Aware is fully compatible and accessible with iOS’s voiceover screen-reader. After installing and opening it, the app automatically began searching for beacons around The Chicago Lighthouse. Seconds later, it announced that I was in the lobby. When I hit the “more information button on the upper right of the screen, it told me that the information desk is directly straight ahead from the entrance, and that there are seats all around the lobby. Beacons are also installed in three of The Lighthouse’s vending machines. After tapping the information button when I was near the drinks vending machine, the app read the different items and prices.

This app is an emerging technology that I believe has a lot of potential. It is easy to use, and very accessible to people with varying degrees of vision loss. Directions are clear and easy to understand, and the app constantly announces the areas users are approaching. This is of tremendous help for orientation purposes. I hope that one day more places will adopt this remarkable technology so that people with vision loss have the freedom to venture out and explore at their heart’s content. Kudos to Rasha Said and the entire Sensible Innovations team for their hard work. The possibilities for this technology are endless!

Commentary: Giving Paralympians The Media Coverage They Deserve

The 2016 Rio Olympic Games are in full swing, and so is the excitement and anticipation of both athletes and audiences alike. Those who can’t get enough of the Olympic Games have the Paralympics to look forward to, starting on September 7th. Considered the second largest sporting event in the world, the Paralympics are held in the same venues as the Olympic Games, and feature athletes with physical disabilities and visual impairments from throughout the world. Although the sports are adapted for players with disabilities, they are governed by the same rules of the Olympic Games.

It is easier now more than ever before to keep track of the Olympics, thanks to the Internet, television and social media. Unfortunately, I am not sure we can say the same about the Paralympics. Not much is said in mainstream media about the Paralympic Games or athletes, so I don’t blame the average person for not knowing about these events. For the first time in U.S. history, NBC and NBCSN will broadcast 66 hours of Paralympic events, including the September 7th opening ceremony. Compared with the thousands of hours of Olympics content available on TV and online from these channels, this coverage is minimal at best.

Just like all other athletes, those with disabilities deserve equal media coverage and recognition from the audience. Athletes with disabilities are no more or less inspirational than those without. Disabilities set aside, these athletes need to work just as hard as Olympic athletes to achieve Olympic glory. Take the example of U.S. Paralympian Tucker Dupree, who is on the quest for his first gold medal in swimming. Fellow team member Lex Gillette hopes to continue his winning streak in the long jump category. Both athletes are visually impaired, but had to train and work equally as hard as their sighted counterparts to qualify for the Paralympics.

Besides giving more attention to the Paralympics, the media should portray athletes with disabilities in a positive and enlightening way. I often see stories where more focus is given to an athlete’s disability, rather than their athletic career and goals. While it is true they have overcome obstacles foreign to most people because of their disabilities, Paralympians have other interesting characteristics. They are first and foremost people, and – like athletes without disabilities – have other goals and aspirations.

Kudos to NBC for its commitment to broadcasting part of the 2016 Paralympic Games. This is a step in the right direction, and I hope coverage will be expanded in the future. All athletes, regardless of abilities or disabilities, are inspirational in my book. Paralympians are not participating in the Paralympic Games because of their disabilities, but rather because of their incredible athletic abilities. This, I think, is worthy of more attention from media in the United States and throughout the world.

Interested in watching the Paralympics? This website lists the different TV channels and websites that will broadcast the games around the world.

Top 5 Burning Questions about Blindness

Top 5 Burning Questions about Blindness

Most people have never met, let alone interacted, with someone who is blind. Naturally, they have many questions, both about blindness and visual impairment and how we go about our daily lives. Those of us who are blind often get questions from curious individuals who have always wondered about what it is like to be blind. Below are five of the most frequent questions we get.

  1. Do people who are blind or visually impaired have stronger senses?

Most people find it amazing to see someone who is blind or severely visually impaired crossing streets, being able to tell different noises apart and so on. This can only mean that after we lost our sight, our other senses improved. Actually, there is no research or proof that our senses of hearing, taste, smell or touch are physiologically stronger. Without being able to see, we have to rely on them to do just about everything. Simply put, we have to pay more attention and use our remaining four senses a little more than everyone else.

  1. Can people who are blind see in their dreams?

This really depends on each person, and when they became blind. People who were born without sight or – like me – lost it early on – do not have any type of visual images in our dreams. Still, we are able to feel, taste, smell and even hear things in our dreams. People who lost their sight later on in life still have visual images in their dreams, even years after the vision loss. Interestingly enough, a recent study showed that people who are totally blind are four times more likely to have nightmares than people with sight.

  1. What do guide dogs do?

A guide dog is specially trained to safely guide someone who is blind or visually impaired. The handler tells the dog where to go by giving him directions (such as forward, left and right), and the dog leads the person. Guide dogs are allowed in all public places in the United States. This list of frequently asked questions about guide dogs gives more information on what these animals do.

  1. Do all people who are blind read Braille?

Only 10 percent of people who are blind have absolutely no vision, and the remaining 90 percent are able to see at  least some print. Even among people with no vision, only 10 percent read and write Braille. Most people use audio or large print to read print materials. Adaptive technology like screen readers, magnifying software and many other devices have made it much easier for people with vision loss to access print materials.

  1. How long does it take to learn Braille? Learn to travel with a cane or dog guide? Use computers?

Again, this really depends on each person. Everyone learns at a different pace and style, and training can take from a few months to years. Learning things like Braille or assistive technology might be easier for someone who has been blind all or most of their life, while people who lose their vision later on may have more difficulties. Having information and resources as well as maintaining a positive attitude and being persistent are keys to overcoming challenges!

What other questions do you have about living with blindness or visual impairment? Please share and we will answer them in future posts!

Finding Vision and Hope Through Modern Technology

ANDY FB

Last week, CBS 2 Chicago aired a story about Chicago Lighthouse patient and avid Chicago Cubs fan Andy Fabino. The piece showcased the BrainPort V100, an innovative device which helps people who are totally blind identify letters and numbers, recognize objects and become more aware of their surroundings. The device, which is currently offered at The Chicago Lighthouse, transmits visual information through gentle electric stimulation on the person’s tongue. I caught up with Andy to learn more about the renewed sense of hope he has found thanks to the BrainPort and The Lighthouse.

Andy’s life was forever changed on September 28, 2011 when he suffered a brutal assault and was left for dead. After spending 14 days on life support and in a coma, Andy realized he could no longer see when he woke up. He figured his doctors would be able to “turn the lights right back on,” and everything would return to normal. After coming to terms with his blindness, Andy knew he had to take the next step and learn how to live without sight. He enrolled at the Illinois Center for Rehabilitation and Education (ICRE,) where he received training on assistive technology, orientation and mobility and other activities of daily living for nine months.

During a visit with his Ophthalmologist, Andy learned about the BrainPort V100, a new device developed by Wicab Inc, a company based out of Middleton, Wisconsin. Months later, he was contacted by Meesa Maeng, assistant director at The Lighthouse’s low vision research laboratory. Andy began working with Meesa to learn how to use the BrainPort V100. The device was approved by the FDA in 2015, and is offered at The Chicago Lighthouse.

Patricia Grant, director of clinical research for Wicab, explains that the device consists of a digital video camera, hand-held controller, base unit and a small electrode array which rests on the top of the user’s tongue. The images captured by the camera are translated into vibrations that are felt on the tongue, a sensation described by patients as similar to the popping of champagne bubbles. The training, which generally takes 10 hours, consists of learning how to interpret the sensation and operate the device. Patients are then able to do things, like identify and reach for nearby objects, identify objects from a distance, follow a pathway without veering off, and avoid colliding with obstacles.

After using the device for over a year, Andy says it has dramatically changed his life. He can “see” with his tongue his grandson waving at him and the cars passing by when out and about in the street. Although the BrainPort does not allow him to visually see things, he can get a better sense of the people and things around him.

“It doesn’t make the lights come back on … what this device does, it gives a little bit of brightness to an otherwise dark place,” he says.

A major drawback is the cost of the device. With a price of $10,000, it is a major financial commitment for the average person to purchase the BrainPort. Since the device is currently not covered by health insurance, many patients turn to crowdfunding websites like Go Fund Me or KickStarter. Wicab is in the process of working with insurance providers and other parties to develop more purchasing alternatives. Ultimately, the cost will not be a burden for those that can potentially benefit from the device.

Andy encourages anyone who is interested to learn more about the BrainPort, and to try it out if they have the opportunity.

Those interested in learning more about the BrainPort V100 can visit Wicab’s website for more information. There, they can see a videowhich demonstrates and explains the BrainPort.