Finding My Way Out of the Dark

This semester I am taking a course called “Counseling Students with Special Needs.” This course explores the various disabilities that a student/client may be diagnosed with and how to provide the best mental health care for these clients.  I’ve always had an interest in disability services and am excited to be able to learn some skills to help me work with my clients, and find ways to advocate for services for myself.  Last week, in class, was the first time that I spoke publicly about my disability.  I have friends and family who know about my disability, but I had never spoke about it in detail.  I am legally blind.

When I was two years old, I was diagnosed with limited vision.  While growing up I was provided services to help me in school, such as large-print textbooks, magnification devices, books on tape, and an aide who would come in once a week to make sure I was doing well in school and to see if I required any additional services.  When I was in kindergarten I can remember taking a van to school, rather than the regular bus.  At that age, I didn’t understand what I was dealing with, but now that I’m an adult and have experienced 19 years of school I realize how fortunate I was to have all of that help.

As I got older and moved to a new town, which meant starting at a new school, I decided that I no longer wanted to accept any assistance or support from my schools and that I’d be able to succeed without the help of special books or equipment.  I was too stubborn and proud to accept any accommodations that were offered to me.  Looking back, I realize how naive I was and how wrong my decision to turn away the help was.  It greatly affected my life and my ability to prosper in school.  Unfortunately, I did not know how to request those services in school and continued on while struggling, but was very successful.

Around my 16th birthday, I did what every other 16 year  old does, I went to apply for my learner’s permit. I was so excited, I couldn’t wait to drive.  I had been studying the practice material for weeks and knew I was going to pass the exam.  I did pass the exam, but the next part was not so great.  I was unable to pass the vision portion of the test.  No matter how hard I tried, I was just not going to get it.  I remember the woman behind the desk even telling me to take a break and relax, maybe my nerves were interfering with my ability to read the chart.  This didn’t help; I still failed.

This led to a long process of seeing an eye doctor, trying to get some answers to the question as to why my vision was so poor.  It took a few months, but I was finally given an answer. Right before my 17th birthday, I was told that I am legally blind and that I have a disorder called Ocular Albinism.  I can only remember feeling disappointed because I knew at that point that I wasn’t going to drive, ever.  I have what is known as Ocular Albinism Type 1, or Nettleship-Falls Syndrome.  Since I am a graduate student and I know that everything on the Internet is true, I have included a quick definition from Wikipedia so you can better understand.

OA1 is recognized by many different symptoms. Reduced visual acuity is accompanied by involuntary movements of the eye termed as nystagmus. Astigmatism is a condition wherein there occurs significant refractive error. Moreover, ocular albino eyes become crossed, a condition called as ‘lazy eyes’ or strabismus. Since very little pigment is present the iris becomes translucent and reflects light back.  However, the most important part of the eye, the fovea which is responsible for acute vision, does not develop properly, probably indicating the role of melanin in the development stages of the eye. Some patients may also develop photophobia (discomfort or pain to the eyes due to light exposure).  All these symptoms are due to hypo-pigmentation of the retina. Moreover, in an ocular albino eye, nerves from back of the eye to the brain may not follow usual pattern of routing. In an ocular albino eye, more nerves cross from back of the eye to the opposite side of the brain instead of going to the both sides of the brain as in a normal eye.

Now that you have the scientific definition of my disorder, here is what I see.  I have night blindness, I have a great deal of difficulty seeing in the dark, even if there is a small light source.  In my words, my eyes do not reflect the light that comes from the source, so I see things much darker than other people.  I also have color blindness.  I have a mild case, where I mix greens and blues and browns and greens.  As far as I’ve been able to research and figure out, this is called Deuteranomaly.  I also have trouble seeing certain colors on other colors.  For example, I have difficulty seeing black on white.  The black text seem to have shadows on paper and it makes it very difficult for me to read; the same goes for computer screens.  There are many other things that I struggle with, visually, but I won’t go any further.

Back to my point of this post.  My class, Counseling Students with Special Needs, triggered an urge to advocate for not only myself, but for others. I have found a way to succeed in school and will continue to succeed, despite my disability.  I’m going to continue to advocate for myself, but also hearing the stories of my fellow students has given me the urge to advocate for them and their families.  I see a new project in the future…keep an eye open!


About the Author

Steven DiMarzo is starting his graduate studies in mental health counseling at SUNY Oswego. He completed his bachelor's in human development in May, and served as president of Student Association during his senior year.
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