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.
​
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.

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.”

Why Not?

Post by P. Nina Livingstone

Nina Livingstone

Growing up, I always enjoyed my sighted life; I saw blue skies, the exquisite ocean and its waves embracing their shores, the colors of the seasons in New England and the colors of my socks, the expressions of others in all conversations… bliss! Now all the visuals, the beauty of nature, people, animals, the earth with its fields and farms, the flowing rivers and printed New York Times, magazines and books – everything remains dormant in my mind’s vault. Everything around me relies on memory, the reels of “film footage” from the past. I lost my sight completely in the year 2000 from a hereditary eye disease, retinitis pigmentosa (RP).

Adjusting to the world sight-lessly entails time and patience – both of which I find irritating, because time is precious and short, and patience – well, I have little patience. Perhaps I am infinitely in denial about my sight loss. My door remains open to the possibility of seeing again – why not?

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!):

Summer fun: no sight necessary

Post by Holly Hayes

Summer is the ultimate time for exploration and new experiences, especially in a place as vibrant as New England. Although this can seem daunting for someone living with a visual impairment, there are many accessible opportunities available. Today there are more options than ever to get out and enjoy the summertime, from theater and museums to outdoor activities and sports games.

THEATER

A majority of the theaters in Boston offer audio described performances on certain summer days, with some options listed below:

o   The Regent Theatre Located in Arlington, MA is one of the most accessible theaters in the area. The theater keeps the house lights on during every show which is helpful for those with low vision, and the entire venue is open and one level so it easy to maneuver for anyone with a disability. They have music and concerts, films and comedy and even family fun events depending on the day.

o   At the Boston Opera House there is going to be an audio described performance of Phantom of the Opera on Sunday, June 29^th at 1 pm.

o   At the American Repertory Theater there is going to be two audio described performances of the Tempest on June 4^th at 7:30 pm and June 7^th at 2 pm.

o   At the Huntington Theater, there are audio described performances of Smart People June 6^th at 10 am and June 14^th at 2pm.

The interior of the Boston Opera House, which provides audio described performances for visually impaired visitors.

MUSEUMS

The Museum of Fine Arts has an array of options for museum goers with disabilities throughout the summer. The MFA has the “Feeling for Form” program which takes place on the first Sunday of every month at 1 pm. Learn more. Pre-registration, which closes a week before the program date, is required but there is no additional fee. The program offers tours for all ages. If you’d prefer to explore the museum on your own, the MFA also has assistive listening devices available for the exhibits at the Sharf Visitor Center. See upcoming accessible MFA events here.

The Museum of Science also offers sighted guide tours, assistive listening devices for the museum and the available films as well as for selected planetarium shows. Learn more.

Thanks to the Highland Street Foundation, every Friday between June 28^th– August 30^th is Free Fun Friday with free admission to museums and cultural events around the state. The full list of dates and events can be found here. The MFA is a Free Fun Friday museum on July 18^th. The Isabella Stewart Gardner Museum also has an introduction to the museum in large print and braille as well as audio listening devices available. It is also a Free Fun Friday museum on August 1^st.

A MABVI client participates in the Feeling for Form program at the Museum of Fine Arts

SPORTS

One of the most accessible sports during the summertime is beep ball, a modified version of baseball for blind and visually impaired athletes. Beep ball involves a sighted pitcher and catcher while the rest of the team is visually impaired. The ball beeps after it is thrown to help players estimate when to hit the ball based on the closeness of the beeps. Players run to a buzzing base to try to score a run. According to the Boston Renegades, the Boston beep ball team, you don’t need to have any prior experience to play the game, only a commitment to the team.

Three beep ball players with blindfolds in the middle of a game

If you would rather experience a game from the stands, there are also options for accessible sports games in Boston. At Fenway Park you can use an assisted listening device that plays the radio description of the game in real time without the 10-second delay experienced by listeners at home. There are also ALDs available at TD Garden on level four outside section 4 for most games and performances.

A photo of a crowded Fenway Park, which offers assisted listening devices during the games.

OUTDOOR ACTIVITIES

There is also a variety of outdoor activities throughout New England including cycling, fishing, and accessible beaches and hiking trails. Some of these activities can be found through the the Department of Conservation and Recreation’s Universal Access Program. DCR hosts accessible activities throughout the summer such as nature walks led by park interpreters or assisted listening devices if requested. Learn more here.

The Carroll Center for the Blind offers summer events such as sailing trips, birding by ear, tandem biking, canoeing, and a New Hampshire White Mountains trip! Find more information here.

Do you know of other great accessible summer activities in your area? If so, leave your tips in the comment box below!

Check out the MFA’s A Feeling for Form Access Program

Wearing a white glove, Charles Tatum touches some of the artwork at the MFA’s Feeling for Form Access Program.

When MABVI staff members call our support group members to ask them if they would like to go look at works of art, we are often met with surprise. “Honey, you know I can’t see, right?”

Contrary to popular belief, it is actually easy for the blind and visually impaired community to enjoy a tour at the Museum of Fine Arts. A Feeling for Form is a program that offers a tactile exploration of select sculpture and furniture to visitors who are blind or visually impaired. For works that cannot be handled, there are verbal descriptions, tactile diagrams, and replica objects to help bring the art to life. The tours are which are led by trained museum volunteers or staff.

“I think it’s great that visually impaired and blind people can actually go to a museum and enjoy it,” says Barbara Duford, the coordinator of MABVI’s Medford and Somerville-Cambridge Low Vision Support Groups. “You never thought that would be possible years ago.”

These tours are available for a variety of events, including the Inspiration of Helen Keller tours and the Art in Bloom 2014 celebration on April 25.

The Massachusetts Association for the Blind and Visually Impaired partners with the MFA to schedule several tours a year for low vision support group members. When Duford went a few years ago, it was the first time she had ever been to the MFA. She has returned multiple times since then.

“I think it’s fascinating when they give you gloves and you can feel the different facets of the sculptures,” she says. “They have someone who describes the artwork and I get levels of fine detail that I probably wouldn’t have ever seen. It’s quite fascinating.”

Members of the Sharon-Stouton Low Vision Support Group attend a Feeling for Form tour at the Museum of Fine Arts. One support group member (left) is wearing gloves to touch select sculptures.

Another benefit of the tour is its pace, Duford says. She recalls that participants didn’t feel rushed and felt welcomed by the volunteers. “They do it at a pace where an older person could probably keep up with them, they seem very patient with people,” Duford says.

Ruth Adjorlolo, former coordinator of the Sharon/Stoughton Support Group, has also attended several Feeling for Form tours. As a painter, Adjorlolo says she appreciates people getting to connect with art in new ways.

“I’m always happy if people can appreciate what an artist is trying to demonstrate,” Adjorlolo says. “A painting can be like poetry, so they can get the feeling in the atmosphere…they can sort of appreciate the perspectives or play of light or contrast.” Adjorlolo said the MFA tour was one of several ways support members could come together and experience something new. “They look forward to getting out,” Adjorlolo said. “That encourages them to exchange ideas.”

A Feeling for Form tours are open to any visually impaired person. They can be scheduled on an individual basis or try out the info series, available the first Sunday of most months at 10:30 am. There is no fee for Admission or for the tour but pre-registration is required through the Access Department at the MFA. There are also other audio and tactile materials available for low vision visitors. Contact Valarie Burrows at 617-369-3302 or Hannah Goodwin at 617-369-3189 for more information. You can also send an email to access@mfa.org.

Upcoming events
The MFA offers more events and accommodations throughout the spring. See the details below.

Inspiration of Helen Keller Tours
This tour revisits Helen Keller’s experience from when she visited the MFA and includes a touch tour of the collection of Art of the Ancient world wit ha focus on Roman art. Tours can be requested whenever the museum is open, but registration is required. Please schedule the tour 10 days in advance. For more information or to register, email vburrows@mfa.org.

Art in Bloom 2014
Guided tours are available for the annual celebration of art and flowers for Friday, April 25. Pre-registration is required and attendance is limited. For more information or to register email vburrows@mfa.org.

For any visit, the MFA has an MFA Guide portable touch screen player, tactile and Braille materials and a large print map. Each of those items are available at the Sharf Visitor Center.

If you’re interested in hearing about news and additional upcoming events from the MFA, email access@mfa.org and join our distribution list.