Naturally Good at Being Undead and Hungry

Post by David Kuhn

David Kuhn running with MABVI's Andrea Croak as part of Team With A Vision at the Boston Marathon

David Kuhn running alongside MABVI’s Andrea Croak as part of Team With A Vision at the 2012 Boston Marathon

To date I have been in three plays, all of them after losing my eyesight. The first play I had a leading role; the next play, three smaller parts; and for the third, Night of the Living Dead, I was only in a couple of pre-recorded video shoots. I guess I’m going downhill, and the next step will probably be – oh no, director!

For the Night of the Living Dead I was one of the zombies. A few days before my Ironman in Wisconsin, the director of the play, Tim, assembled all of us zombies for a little walking dead training. Tim gave a number of visual examples of how to “walk like a zombie.” Well, since they were visual, of course, they didn’t exactly work for me.

“Hey Tim,” I asked, “Do you have a couple of minutes to work with me so I understand what you just did?”

Before he could answer, a woman next to me who I had just been talking with, grabbed my arm and said, “I’ll be glad to help you,” and off we went a few feet from everyone else. Continue reading

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Why Not?

Post by P. Nina Livingstone

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? Continue reading

For the Love of the Game

Post by Brandon Cole

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

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. Continue reading

Doing Good: A Volunteer’s Story

Post by Ilana Bergelson

Ilana and Kate posing together at the gym

Ilana (right) and Kate (left) at the gym.

Having participated in a volunteer program called Service of Sight through Delta Gamma at the University of Chicago, I wanted to carry on the same type of community service following graduation. One moment when I knew I wanted to volunteer with the visually impaired was seeing the blind runners and their guides during the Boston Marathon. Their perseverance was amazing, and even though I was happy to volunteer in whatever way necessary, I secretly hoped I could be a running guide too. I heard about the Massachusetts Association for the Blind and Visually Impaired (MABVI) through the Delta Gamma alumni group, and with an upcoming training session and a location nearby, I knew I had to join. Continue reading

Gingham Style and Other Calico Dreams

Post by David McCord

David McCord in Arizona, as part of the year he ran in all 50 states

David McCord in Arizona, as part of the year he ran in all 50 states

Occasionally I have a thought. Usually when I announce this, my friends all scream and run for cover. My having a thought is like announcing the end of the Mayan Calendar; nothing good can come of it.

But in 2013, I ran my very first marathon: Boston. Boy, did I pick a year to run Boston! After the bombing occurred, I was stuck eight blocks from the finish line, my brain in a fog, hurting, unclear as to what was happening, trying to stand up for over an hour until we were told by the police, “Go home.”

I went home through back alleyways, since so many streets were closed due to the bombing. No finish. No medal. And it didn’t occur to me until the next day that maybe I could have opened my home to other runners who were visiting Boston, staying in hotels that they could not return to because their hotel was now a part of a crime scene.

A few months later, I had my “big thought”: When I return to the Boston Marathon next year, why not open my home to a visiting visually impaired runner? Continue reading

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!): Continue reading

Why You Should Always Wear Clean Underwear

Post by Benjamin “Tracy” Minish

Benjamin “Tracy” Minish holding a NASA sign in front of an artificial space backdrop.

Benjamin “Tracy” Minish

I have been married for over thirty-six years and have three wonderful sons. My wife is totally wonderful too – let’s just say I married above my pay grade!  I’ve worked for NASA for over thirty years and plan to keep on this amazing rocket ride for at least five more. I have a BS in Computer Science from the University of Georgia (go Dawgs!) and I currently serve as the Chief of NASA’s Mission System Operations branch.  Ouch, I had to pinch myself to see if it was true, and dang if it’s not.  I am uno lucky man and I fall asleep each night counting my blessings.

And, oh yeah, I also only have about five degrees of my field of vision remaining, and those five degrees stink, but I believe my vision loss has made me stronger.

It does lead to some interesting situations, though. One day I told my division chief I was stinkin’ tired of running the ISS Recon branch and was in need of a change.  He came back a few days later and asked if I was interested in traveling the world as the ISS Ground Segment Control Board Chair.  He knew I was legally blind, but still provided me the opportunity.  I strongly believe this is the way the world should spin: give people with physical challenges the opportunity to make their own decisions.  I went home and prayed it over with my wife, and took him up on his offer.

No, no, that ain’t the story – that’s just the intro, so fasten yourself in for warp speed:  I arrive in Moscow after a very long trip – about 18 hours between stepping out of my house and arriving at our hotel.  The hotel is like a maze and has step-ups and step-downs in every room. A nightmare for the “walking dead” – and I’m dead tired!

I wake up several times, trying to adjust to “rocket lag,” and at one point I stumble to the bathroom, half asleep.  I see myself in the mirror and step closer.  Strangely, my image in the mirror turns and briskly walks away.  I do that pinch thing again, and nope, I am not sleeping.  I look around and notice my bathroom is incredibly large, so large it could be… A HALLWAY.  Yikes! Continue reading

Life in the Fast Lane

Post by Thomas Panek

As a guide dog user, I am accustom to calm, rational explanations to strangers of how my dog helps me navigate and why my service animal is allowed in public places, but perhaps my most exhilarating experience as a person who is blind came from living a bit of life in the fast lane – literally.

Most car dealerships won’t turn away a customer with a certified bank check in hand, but some years ago I strolled into a slick Porsche showroom with my guide dog in harness, and it took some loss of patience and assertive posturing to convince Shawn Young, the rep, to brush off the yellow dog hair from the leather seats and hand over the keys to the fastest, newest mid-engine coupe on the market. I was of course blind, and three letter words like the ADA were replaced with four letter words until a shiny black Cayman S, perhaps the most beautiful car ever designed, was hand delivered with a red bow to my doorstep.

Thomas and his guide dog by his Porsche

You see, two decades earlier when I was in college and met my wife Melissa, we had a choice between eating, paying tuition, and buying a rusty old 911 Porsche, the latter lost out. At that time I promised that if I ever am able to do so, I would buy one. That day had come, but the day also came when I no longer had enough vision to keep my drivers license. Continue reading

Shining the Light on Devil’s Snare

Post by Richard Hunter

In Harry Potter and the Sorcerer’s Stone, the reader is introduced to Devil’s Snare, which is a magical vine-like plant that strangles its victims but wilts in sunlight. The more one struggles in its grasp, the tighter its hold. Adversity can be a noose that zaps one’s will. It is suffocating. Where can we find that light that loosens its grasp?

There is not a person that leaves this Earth without facing adversity. It is a given. Loss, illness, injury and broken relationships leave us bumped and bruised, both physically and emotionally. Our response to these normal life occurrences can leave us wounded, broken and bitter. We find others to be inspiring when they respond to adversity in an overtly positive manner. The assumption is that it is nearly impossible to remain positive when bad things are happening. We put ourselves in the other person’s shoes, and conclude that we would never be able to manage that kind of stress. While I’m challenged over and over again in my own thought process, I can’t afford to buy into that way of thinking. Simply put, it would hurt too many people I care about.

At 47 years old, I feel like I’ve had many do-overs already. My original career aspiration was to be an officer in the USMC. However, within 10 months of being commissioned as a 2nd LT, I was diagnosed with Retinitis Pigmentosa, told I was going to go blind in the future, and was medically discharged. While it took several years to be able to think long-term again, I ended up going to graduate school to become a school psychologist. Within 10 years, I could no longer observe students in the classroom or administer one-on-one learning disability assessments. Disability applications risked defining me by my limitations. It was not a good time in my life. Continue reading

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 of the guests at Senior Connection raising their hands in response to Jen Kaldenberg's questions

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.”


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: