So You Have a Disability? Part 1

Snellen

A Blind Man’s Insights Into Daily Life For A Disabled Person

Part 1

By: Mark T. Stanford, Master of Arts in Teaching-MAT

Every person, who has some type of disability, and is capable thinks of their predicament in one of two ways, either as a burden that gets in the way, or an obstacle to overcome.

I paint this concept in such black and white terms because I know this pain far better than most realize.  My name is Mark, I am a masters degree holding teacher with some training in special education, but more importantly I am colorblind and legally blind, which basically means that I have absolutely terrible eyesight. Seriously it’s bad…like throw something at me and it hits me in the face bad.  In this piece I will be walking you through a brief summation of my life with my disabilities so far, and will continue my story through a series of articles.  The most important part of this entire piece is this disclaimer; please read this before reading any further: All stories I tell about myself are meant to be taken lightly.  Please do not consider this a rant of a bitter, disabled man.

I was born in August, 1987 to a loving family with few if any real genetic problems, so naturally I was the runt.  Although it was not discovered until I was about four years old, I was born with colorblindness and a degenerative disease called Cone-Rod Dystrophy.  This condition I would consider the red headed stepchild of eyesight disabilities, you know the one that never gets any attention and gets glossed over in medicine?  Yeah, that one.  My parents always assumed it was me being a goofy maybe even stubborn kid. No one thought maybe the little kid walking into a wall head first was a problem; kids do that kind of stuff all the time right?

After many potential concussions it was time to take me to the doctor and see if I was trying to walk through the walls like a superhero or if I did not actually see the walls.  After a few years and too many frustrating hours in the ophthalmologist offices staring at animal shapes my doctor was able to narrow it down. My doctor, who is an absolute genius, does not normally see patients my age but he decided to stick with my case.  I was finally diagnosed with Cone-Rod Dystrophy.

My parents were heartbroken, convinced it was all their fault and that I was ruined for life.  Like any good parent, mine were searching for treatments and any form of help for me, while I was silently dreaming and hoping for a miracle cure.  As a child I grew up knowing I was different, knowing I would have to learn to adapt to my situation. When my family reached out to the government for aid, as so many do when they need it the most, we were turned away and told I did not qualify for ANYTHING.

At about this time I was starting school. I remember my first teachers attempt to help me while other students hated the attention I was receiving, which obviously I did not want in the first place.  I learned to hate my disability and find ways to ignore it or keep quiet about it.  It only got rammed back in my face when I was told I had to go to a transitional grade, which was a polite way of saying “You did not pass kindergarten.” Way to go Mark… black marks that early on your permanent record.  While others, who suffered from colorblindness like my father, are told they are being stubborn when they refuse to learn the colors of the rainbow and are held back a grade. I was extremely fortunate to be sent to a special classroom for people with learning disabilities.

Once I finished this transitional grade and entered into the first grade, I met some of the best people, who are still part of my life today.  I had friends and teachers, who helped me every step of the way, while my parents fought tooth and nail to provide for my sister and I. My sister and I were lucky enough to attend a private school, paid for by my mother doing bookkeeping and my father painting classrooms at the school. This small private school had my disability in mind every step of the way, even though they did not benefit from state funds or disability and special education programs.  I do believe, I received a better education at that small school than I would have ever received in a public institution with all of the necessary amenities.

As I continued to grow and change my eyes did the same but they steadily worsened, since this is a degenerative disease. My grandfather blamed himself for my eyesight, as did my parents, and it has plagued them my entire life. The truth is it has never been anyones fault. If you are a parent or family member of a disabled person, the truth is there is nothing you have done to make this “your fault.” Some call it a test of faith from on high, some call it bad luck, I call it bad genetics. You cannot blame a gene for creating someone unique and special, if you could then there would be far more people that looked and acted the same. Let’s face it, who wants more than one of our current and oh so LOVELY pop culture icons?  I know I can do without some of these “individuals”, let alone more of them.

As cliché as it sounds we are all snowflakes, so unique and individual that even twins may look the same but they are invariably different.  Please remember, it is never anyone’s fault for a disease or an illness caused by genetics.  If you think you are alone there are thousands if not millions of other people thinking the exact same, wondering what happened to their child or  grandchild. If and when the disabled person says it is your fault, this is only because they are upset with their situation not because they truly believe it is YOUR fault.  I told my parents this many times throughout my life but I never meant it. I was upset because I couldn’t do what others could and take advantage of every day.

Some who suffer from disabilities are bitter, others are proud and strong, while I myself feel I am an educated individual trying to help others understand what it is like to walk a mile in my shoes. No really, since I legally cannot drive, I walk everywhere.

 

photo by Daniel Novta CC BY 2.0

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