Dangerous Vision: Practical Advice for Those Living With Low Vision

Reprinted with permission.

My name is Randolph B. (Randy) Cohen.  I teach finance and entrepreneurship at Harvard Business School, and I am a partner in ExSight Ventures, a small money management firm that invests solely in technologies and therapies related to vision and blindness.  I created this site to share my experiences with vision loss.

One of my hopes for the site is that I and others can share practical advice with folks who, like me, are living with low vision.  I have received many valuable tips over the years from others with vision problems, and I’ve figured out a few things on my own, and I’d like to use this forum to share such ideas more widely.  Many of the most helpful pieces of advice I have relate to products, high and low-tech  both, that I use to be more efficient at getting around and getting things done.

In addition to technology, I’ll share thoughts on other choices one can make to minimize the ways low vision affects your life.  Plus I have a lot of stories about what it’s like living with this, some of which may help fellow sufferers feel less alone, some of which may give their friends and loved ones a sense of the experience, and some of which are just embarrassing enough to be pretty funny.  And I’ll feel free to ramble on about other subjects if I choose!  With luck I’ll also persuade friends and colleagues to pitch in with their thoughts and advice.

“Low vision” covers people in a myriad of different situations, all I can do is talk about what works for me and add the occasional comment about tweaks that might be valuable for people whose vision is poor in ways different from mine.  But I wanted to put this up because low vision is incredibly common but I haven’t seen that much written about managing it.  Most people who address sight disorders are addressing the challenges of the totally or almost-totally blind, and of course those folks are the most in need of assistance, so that’s fine.  But hopefully I can help some people in weird in-between situations like mine.
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Some of the ideas here will be helpful to people who suffer total blindness, but in many cases people in that situation will find other products and services more helpful.
It may be useful for some users to know the perspective I am coming from.  I suffer from Retinitis Pigmentosa, a degenerative condition of the retina that is closely related to the more common ailment known as macular degeneration.  Many RP sufferers have 20-20 vision but with very narrow visual fields (“tunnel vision”).  My situation is quite different.  I have substantially reduced visual fields, but not really a “tunnel.”  In addition I have extremely poor visual acuity and high light sensitivity.  As a result I can see things better on a computer screen than in “real life,” but only if the computer is set to “inverted” colors, i.e. black background with white text, or some similar high-contrast scheme.  Once again, the solutions I personally recommend will be of most help to those whose visual impairments are most similar to mine, though some may be helpful to a wide range of users.

A note on nomenclature.  I will use terms like “low vision,” “partially sighted,” “legally blind,” etc. as seems appropriate to what I’m writing about, and I’ll make little effort to distinguish between these terms.  I will also use the self-mocking term “dangerous vision” to describe what I deal with, as seeing the way I do can be physically dangerous, to myself and to those around me, but also because of the positive sense of living dangerously — my eyesight makes life an adventure.  And of course the name is an homage to Dangerous Visions, the seminal fiction collection edited by the great Harlan Ellison.

Read more from Dangerous Vision. 

Randolph B. (Randy) Cohen is a Senior Lecturer in the Finance Unit at Harvard Business School.

Cohen will teach FIN 1 and FIELD 3 at HBS this year; he will also be teaching Investment Management as a visitor at MIT Sloan School of Management.  He has previously held positions as Associate Professor at HBS and Visiting Associate Professor at MIT Sloan.

Cohen’s main research focus is the interface between the actions of institutional investors and price levels in the stock market. Cohen has studied the differential reactions of institutions and individuals to news about firms and the economy, as well as the effect of institutional trading on stock prices. He also has researched the identification of top investment managers and the prediction of manager performance, as well as studying the market for municipal securities. 

In addition to his academic work, Cohen has helped to start and grow a number of investment management firms, and has served as a consultant to many others.

Cohen holds an AB in mathematics from Harvard College and a PhD in finance from the University of Chicago.

Here to Help: Meet Steve Jordan, Director of Orientation and Mobility

By Brian Klotz

Steve Jordan has devoted his career to helping others achieve their goals. As the Director of Orientation and Mobility for the Massachusetts Association for the Blind and Visually Impaired (MABVI), Jordan helps to train individuals in how to navigate their environments safely and as independently as possible.

This desire to assist and motivate others can also be seen in Jordan’s other passion: coaching youth sports. A Massachusetts native currently living in Walpole, Jordan received his Bachelor’s from Framingham State University, and afterwards worked at Newton North High School as both a special education aide and a coach for football, baseball, and wrestling. Today, in addition to his duties at MABVI and as the proud father of five children (including a set of triplets born last February!), Jordan continues to coach all three sports at the Nobles and Greenough School in Dedham.

Jordan always knew he wanted to help people through teaching and coaching, but it wasn’t until he was working at Newton North that he discovered exactly how. As a special education aide, Jordan found that one of the students he was working with one-to-one would leave for 45 minutes twice a week, and Jordan never knew why until he asked if he could come along.

Giving Back

By Brian Klotz

Like many people, Cindy Wentz entered college unsure of what her career path would be. A New Jersey native, she moved to Massachusetts to attend Brandeis University, initially as a Psychology major before switching to Sociology. After graduation, Cindy worked at a bank, but was still unclear on her ultimate career goal until she decided to go back to school, obtaining a Master’s in Rehabilitation Counseling from Boston University.

“I remember in high school I always thought I wanted to work with people,” she says, at first thinking she would become a teacher like much of her family, before deciding it wasn’t for her.

Both Cindy’s desire to help people with disabilities and her tireless work ethic can perhaps be traced back to the discrimination she faced trying to gain employment in her younger years.

“In high school, when everyone else was getting their summer jobs, I had such a hard time,” she explains. Having been blind since birth, Cindy recalls how many employers rejected her because of her disability – and would say so outright.

Eyes in Your Pocket: “BlindTool” App Represents the New Frontier of Assistive Technology

By Brian Klotz

FastCompany calls it “a peek at an inevitable future of accessibility,” a new app called BlindTool that allows users to identify objects in real time using only their phone, and it was created right here in Boston. Developed by Joseph Paul Cohen, a current Ph.D. candidate at the University of Massachusetts Boston and a Bay State native, it aims to increase the independence of individuals who are blind or visually impaired by putting an extra set of eyes in their pocket.

“I’ve had a desire to do this for a while,” says Cohen, whose initial interest in assistive technology came from working with a colleague who was blind during an internship at the U.S. Naval Research Laboratory in Washington D.C., inspiring him to think of the ways modern technology could improve the lives of those with vision impairment.

The app runs on Android devices, and identifies objects it is pointed at in real time using a “convolutional neural network” that can understand 1000 “classes” of objects. While the technology behind it may be complex, its usage is simple: wave your phone around, and the app will cause it to vibrate as it focuses on an object it recognizes – the more it vibrates, the more confident it is. Once it’s fairly certain, it will speak the object aloud.

“It always has a prediction,” Cohen explains, regardless of where it is pointed, so the vibration function allows the user to zero in on objects the app has more confidence in identifying.

Ready to Launch: Assistive Technology Helps People with Visual Impairment Enjoy Public Places in a New Way

LaunchGuide in action at the Dennis Braille Trail

Post by Brian Klotz

If you’ve been to a number of locations in Massachusetts, including the Dennis Braille Trail in Dennis, MA, you may have noticed something new: a device with a QR code that can be read by your smartphone. Called LaunchGuide, this new device was created to help people with visual impairment enjoy public places with content that not only helps them navigate, but adds to the experience, and it is yet another example of the creative ways assistive technology is becoming more prevalent.

Designed by an assistive technology company called COMMplements (the brand name of products of Peacock Communications), LaunchGuide can be used by anyone with an Internet-connected device capable of reading a QR code. Each LaunchGuide location is equipped with a wire guide that helps the user position their smartphone so it can read the code. This takes them to a webpage with content unique to that location – for example, information about the exhibits in a museum or the stops along a trail, which the user can have read to them using text-to-speech as they explore.

An example of a QR code

By housing content on a webpage, users can select how and in what order they experience it, as opposed to a linear audio tour.

I Won’t Know Unless I Try

Post by Brian Klotz

Ellie Leach at MABVI’s Senior Connection 2014

Ellie Leach had never used a computer. No email, no games, no web browsing – as she puts it, “I had never even used a typewriter!” Over twenty years ago Ellie, now 78, was diagnosed with macular degeneration, a medical condition that causes vision loss, putting yet another obstacle between herself and tech-savviness.

Today, however, Ellie is the proud owner of an iPad, which she uses to email friends and family, play games, and listen to her favorite music.

“It’s like I’m alive again,” she says. “I feel like I’m a part of everything again.”

For the Love of the Game

Post by Brandon Cole

Brandon posing in front of a Lego Batman booth at Ohio Comic Con 2014

My name is Brandon Cole, and I am a gamer. Some people are surprised when I tell them this. “But wait, how can this be? Are you not blind?”

Yes, I am indeed totally blind, and no, playing video games is not an easy undertaking, but it is possible.

When I was young, though, I dismissed video games as something that I simply couldn’t participate in. After all, the word “video” is in there, right? Well, one day my older brother played a trick on me. He handed me a Nintendo controller and invited me to play Super Mario Brothers.  The game began, and before I knew it, I was slaying monsters, collecting coins and extra lives, conquering castles, saving the Princess… except I wasn’t. He had been the one really playing the game, and the controller he handed me wasn’t actually controlling anything. I was crushed. The trick had an unforeseen consequence, though: I got the itch. I vowed to try more games on my own, when he wasn’t around, and I vowed I would win on my own.

And that’s exactly what I did. I went back to Mario Brothers, and through a bunch of trial and error and learning what my limits were, I eventually completed the first level. That’s as far as I got, but it was enough to prove to myself that I really could do this. I began playing more games, experiencing both success and failure in varying doses, but I was hooked.

Visually Impaired? There’s an App for that.

Want to know how much money you’re holding? How about the color of your shirt? Or maybe you just want to curl up with a book? If you’re one of the over 20 million adults in America alone who suffer from vision loss, these everyday actions can be cumbersome and difficult. What can you do to help with these daily tasks while retaining your independence?

Reach for your iPad, of course.

As technology becomes increasingly intuitive and user-friendly, more and more visually impaired people are embracing high-tech solutions for their everyday needs. And while of the 20,000 apps developed each month, many are, shall we say, less than useful (for only $1.99, “Melon Meter” uses the iPhone’s microphone to measure the ripeness of watermelons!), several developers are using the capabilities of modern technology to aid visually impaired individuals in innovative ways. We’ve taken a look at just a handful of such apps now available for iOS (most of which you can get for the low, low price of FREE!):

Using Technology in Our Everyday Activities

Jennifer Kaldenberg at Senior Connection giving her keynote talk on technology

“How many of you use technology to complete your daily tasks?”

The speaker is Jennifer Kaldenberg, MABVI Clinical Director & Clinical Assistant and Boston University Professor. She has also worked for the New England College of Optometry and their clinical affiliate the New England Eye Institute, specializing in working with individuals with visual impairment. She is an expert in vision loss, facing a room of hundreds of low vision support group members, many of them seniors. Only about 25% of the adults in the room raise their hands.

“If I told you using a magnifier, or even a bump dot to identify the start button on the microwave is technology, how many of you would now answer that they use technology on a daily basis?” She asks.

All of the adults in the room raise their hands.

Two guests at Senior Connection raising their hands in response to Jen Kaldenberg’s questions

It seems these adults with vision loss use technology every day without even realizing it. Furthermore, it seems many have not been shown or assessed for what technology is appropriate for them. The key is training, according to Kaldenberg: individuals can be trained to use new tools to help maintain participation in the things that are important to them and improve their daily lives. Equally important is an eye examination by a low vision specialist. Yet only 75% of the audience self-reports having ever had a low vision exam. For individuals who have not had a low vision exam or know someone hasn’t, there are many barriers that may limit someone’s ability to access services including: o Lack of awareness of services or assistive devices o Giving up hope that there is help o Having heard “nothing can be done” o Other health issues like cognitive deficits o Lack of financial resources to afford or think they can’t afford technologies Additional barriers may include age, gender and ethnicity. Some of these barriers are the perception of the individual and others are placed on them by a healthcare practitioner, family members, or society. Of the 75% who have received a low vision exam, only 1/10 say their doctor has asked them what they want to be able to do. So how are visually impaired adults supposed to find the technology they need to remain independent?

“Be proactive and ask your doctors about technology,” Kaldenberg says.

Emerging technology is becoming more task specific and requires more training. Research indicates that the average person with a visual impairment uses 6.1 assistive devices, many which are task-specific. Often times, these devices are purchased by the individual through a catalog or are given to them by a family member of friends and not recommended by a low vision specialist. Recent studies report a high rate of assistive device abandonment, nearly 20%, among those with visual impairment. Reasons for device abandonment include the devices are ineffective, they are using other devices, they do not like the device, the device is defective, they have had a recent change in their vision, they do not have the space to accommodate the device, or they are unable to use the devices. Over the next 20 years, the number of individuals with visual impairments is going to increase greatly, so we need to explore new strategies to assist people in remaining active and help them retain their independence. “If individuals can be trained to use new technological devices properly, they will be able to do everything they could with sight.”

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More adaptive technology resources: Adaptivision The Carroll Store Freedom Scientific ABISee Let’s Go Technology Check out this video of Jennifer Kaldenberg discussing OT/vision rehabilitation from our YouTube channel:

From struggle to support

Support group members.

“How would you know?”

A question that has crossed all of our minds at some time or another. When someone gives you advice without ever having been in your shoes, it’s not always helpful. Often it’s more comforting to turn to someone in the same position as you, someone who can give guidance and understanding from personal experience. For those struggling with vision loss, support groups provide a place to share personal fears, coping mechanisms and resources as their vision changes over time.

MABVI Marlborough support group member Robert Marcotte explains: “The goal of the meetings is to give support and information to our members and also to give them a place to come and interact with other people who have the same issues. Many do not know where to turn or what is available to them, and just need to interact with other low vision people and discuss/share their problems.” (See Marcotte Helps Sight-Impaired)