By January 23, 2015 Read More →

Communication & Imagination

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Living with Ocular Albinism I’ve always tried to define the word accommodation?   My definition for accommodation recently changed.   I’m an Information Technology professional; naturally my definition of accommodation has revolved around technology.   Here are the solutions I’ve found to the problems I face with Ocular Albinism.

 

Light Sensitivity

My irises are translucent so they cannot control the amount of light that enters my eyes.   This is almost worse than being legally blind; because of dynamic lighting conditions I am effectively totally blind forty to sixty percent of the time.   I use a hat, tinted lenses and filters to control the light entering my eyes.   The filters I use are not equivalent to the sunglasses you can buy. The filters are similar to what welders use when they’re working.

 

Navigation

Being blind it’s safety first.   I identify as totally blind since it’s easier to explain to people.   I have about five percent “normal” vision.     Being safe navigating requires extreme discipline and structure. I also use a white cane with a wheel. Its funny a lot of people think I’m measuring for carpet.   The cane keeps me from breaking or spraining my ankles and minimizes the perpetual injuries on my shins from running into things.   It also simplifies the conversation when I run into small children. My smartphone gives me directions and more importantly tells me where I am.

 

Work

As a disabled person we solve problems every day.   I’m lucky I get paid to solve big business problems with technology. Most of my work is listening and designing solutions.   I do have to read more than I want and write. I’ve come to love writing.

 

Because of my vision I have a horrible typing position. Even though I touch type I lean forward to see the monitor. I use a 55” monitor and use a lower resolution on the computer achieving the magnification I need.   To compensate for my bad ergonomics I use a Kinesis keyboard, a Microsoft ergonomic mouse and a Herman Miller Aeron chair.

 

Reading

When you can’t see, reading is one of the hardest and most expensive things you do. My disability dictates that I manage my day based on PEFs, pain, energy, fatigue, all determine how much and how long I can use my eyes for intensive tasks. Ironically I’m a visual learner.   Give me a person to work with and a whiteboard and I’ll be an expert in two weeks.     Unfortunately manuals and other books are the best way to learn new things. To read a book that is not available on Kindle or ITunes means purchasing the book and preparing the book for scanning by cutting the spin off. Scan the book with a Canon departmental scanner to convert a thousand two sided pages to digital images in about an hour.   Use Kurzweil K3000 that converts the scanned images to text and text to speech.   When there are books I need when I’m not at home I use Kurzweil Firefly on an iPad.

 

Meeting / Presentations / Performances

When I’m enjoying a performance or participating in a meeting I’ll use a monocular or a Jordy. A Jordy is essentially a video camera with TV screens that sit in front of your eyes; unfortunately the Jordy is no longer available

 

General

I use my iPhone 6 Plus to take pictures and magnify things to see them.   The iPhone 6 Plus is large enough I can do basic email management and manage my social media presence as well.

 

The simple things are often the hardest. For example telling time is very hard.   When I worked at Microsoft I was a top ten presenter presenting at global conferences and the executive briefing center.   I couldn’t see the presenter’s clock and sticking my face into a watch or checking my phone to check the time sends the wrong message to the audience.   The Tissot Silen-T vibrating watch allows me to feel the time.

 

My technical accommodations cost about twenty thousand dollars, half of that cost is just for reading a printed book.

 

My definition of accommodation changed recently I went back to school for radio broadcasting.     During the admissions process I worked closely with the program and the disability student services team to arrange accommodations. When I started classes it was clear that it was up to me to work with each instructor to accommodate myself.      At the end of the semester it was surprising to see that the level of communication I had with each instructor directly correlated to my mark in the course.   Great communications equated into an A or A+ bad communications equated into a D+.

 

It’s a mystery to me how I live my life as it is a constant journey in problem management.   Encountering obstacles and then finding a way to make it work has become my normal.   Really I think life is magic and delightful fun.   Communication was critical in shared problem solving with my instructors. Equally important was my instructor’s ability to “imagine” that I could find a way to do my studies.   When I applied for the program a totally blind person applied and was not admitted.   The program couldn’t imagine a totally blind person working in radio.   There are several blind or legally blind people in broadcasting.   I had one instructor who I had great communication with but he couldn’t imagine a nearly totally blind person like me working in radio either.

 

One day I hope to have the conversation with an instructor or manager.   We’ve worked together to focus on the “what”, the thing that needs to be done.   We’ve worked together to figure out the “how”, to get the thing done.   Together we’ve not been able to find a way to do it. I would relish that day.   So far there haven’t been many things I’ve not been able to find a way to do.

 

My definition of accommodation now is based on communication and imagination.   Technology is still an important factor for accommodation but it’s no longer the only or primary factor.  

Kyle Bergum

About the Author:

Kyle has ocular albinism and has been legally blind since birth. Kyle leads a very active live and is besides his professional career involved in many projects for persons who are different.

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