Growing Up Blind- My Story

Some teachers look at this box of crayons and think back-to-school time and get excited. For me, I have those thoughts too for a few moments.  Then all those insecurities and past memories of what school was like for me as a child come rushing back. Those thought flood my mind, filling it with sadness and sometimes traumatic incidents.
living with achromatopsia a teacher's story
Today I’m sharing with you a more personal side of myself. I was born with a rare birth defect called achromatopsia; I won the lottery on this one!!
Tiffani Mugurussa teacher blogger at time4kindergarten.com
Achromatopsia is an autosomal recessive disease that affects approximately 1:30,000 individuals and is associated with complete loss of cone function. It is most commonly caused by mutations in the CNGB3 and CNGA3 genes and is associated with severely reduced visual acuity and extreme photosensitivity, resulting in daytime blindness.  Due to a loss of cone cell function, patients have complete loss of color discrimination. Most patients with achromatopsia have an average visual acuity of 20/200, resulting in a diagnosis of legal blindness. Profound sensitivity to light during the day results in significant impairment in visual function, and many patients cope by wearing darkly tinted glasses to lessen the effect of light sensitivity.

When I was baby my parents new something was wrong. I had no depth perception and walked right off our deck.  You can only imagine how scared my parents must have been.  They said I went back walking with my hands out on the ground in front of me. Even at 15 months old, I was already finding ways to adapt.
Tiffani Mugurussa teacher blogger at time4kindergarten.com tells her story of growing up with achromatopsia
At age 3 they took me in to see the eye doctor.  It was determined I needed glasses.  It was still unknown at the time what was really wrong.  By the time I was 5 years old,  they had found an ophthalmologist in San Francisco who had made the diagnosis.  Some of my visual acuity could be corrected through the help of glasses, but there wasn't really much else they could do.  

Kindergarten- it is supposed to be magical; you are supposed to remember it.  I do remember it, but it wasn't magical. The only thing I remember is my teacher actually putting an F on my pumpkin because it wasn't cut in the shape of a pumpkin. I knew it was a pumpkin and it was supposed to be a pumpkin type shape. So I cut in the shape of a pumpkin. I couldn't see the lines and she didn't know that I couldn't see the lines. I was five. I didn't know I was supposed to tell her that I couldn't see it, again I was five.  Or maybe I just thought everyone was freehand cutting without lines and that everybody else was just a better cutter than I was. Either way, what I only remember is her writing the F on my pumpkin.

Going through grade school wasn’t easy, as kids pick up quickly that you are different. We moved a lot when I was a kid, I was always the new kid and the kid who was different. Kids can be unkind. Teacher weren’t always very accommodating either. I remember changing schools in third grade. My old school had just started to learn cursive, but the new school had learned it in second grade. The teacher, just said you can look above the chalk board on how to make the letters.  That was fine, if you could see that far.

As the years went on school became increasingly more difficult. I had large print text books- no need to go the gym in junior high- just carry around 20 pounds of history, math and science books.  Not being able to see the board in class was always an obstacle growing up. When I stared Junior high it really started to have an impact on my academics. Imagine what it would be like if you were to sit in a math class and close your eyes all year and just hear your teacher.  For me this is what it was like.  The only difference is that I would see my teachers up there waving their arms around the board saying things like “( a x b3=24}”.  While my teacher was talking and waving his hand, I’m thinking, I wonder what I’m going to eat for lunch.   

They tried to help me be successful- they gave me devices, but what 13-year-old is going to want to wear these- lets be real. Grade school were unkind, but middle school kids were worse even the teachers who thought they were being funny could take jokes a little too far.


When I started high-school I wanted desperately to fit in. I had moved again to yet another school; it was my chance to start over. I wanted no large print books. I found my small group of friends who accepted me for me.  I made it through those teenage years, but the words of the guidance counselor stuck with me.  "your not college material" . Who says that?  Not once did they call me in and guide me to take the right classes to be on the college track. No one guided me to take the proper classes you needed to apply for college.  

Although the guidance counselor didn't believe in in me, I did what I thought you were supposed to do after graduating high school, go to college. I enrolled in our Junior College.  Luckily for me, they had great counselors and support services.   They had somebody that would sit in my math and science classes and take the notes from the board for me.  My math teacher would let me copy his notes before class so I would know what he was writing on the board while he was teaching.  After two years, I transferred to a state college to finish my degree, my teaching credential, followed by my masters degree.  Not college material, I think someone might have misspoke. 

When I was in college, UC Berkely was conducting a study on my eye condition.  They contacted me and asked me to be a participant. I jumped at the chance if it meant helping them find solutions, a cure, something to help me in the future or other people later on. Sadly, the study ended and nothing significant came about for me, but there is always hope that in the future there can be. 

Today my vision is 20/300.  It will get worse with age, just like everyone else.  I need to wear sunglasses when I am outside or in places that have bright lights, such as grocery stores. My lenses are specifically color designed by my ophthalmologist and me. Although achromatopsia is hereditary, thankfully neither of my children have it.  I wear mostly black clothes, it just makes life simpler, My husband, used to work at a wedding shop, so he is great with colors. He can help with matching when I need it.  My kids have been known to mismatch my colored socks on purpose.  

If you were to see me on the street or meet me in person you wouldn’t know.  If you saw me reading you would think- she needs glasses- yes, I do for reading.  Most people who know me, know that I am legally blind, my close friends are amazing when we go places, they remember that my eyes don’t adjust to light as quickly as most peoples do so they need to tell me when there is a step, in case I don’t see it.

I’ve had instances where people who don’t know or they’ve forgotten, just thought I was being rude because they might have waved hello and I didn’t respond.   My sincerest apologies from the past and into the future, I wasn’t intentionally being rude, I more than likely didn’t see you.  Something else that makes living with this so hard is that I have a hard time recognizing people in general. I’m good with remembering names, but faces not so much. So, if you do see me you just might have to tell me your name. 

There are times in my life when I get sad, I feel down, I even get a little depressed because there's things I cannot do because of this disability. I hate the word disability but that is truly what is. It is a visual disability. I can't drive, I can't see things in the distance. I can't see all colors.  I can see colors, I just might not see them the same way as other people do. So, I'm not always sure of what colors they really are. A great example is nail polish. One day I had my nails done and afterwards everyone kept asking me if I was a San Francisco Giants fan. At first, I didn’t know why people were asking me this, until a friend told me my nails were bright orange, not pink.  Now I bring my own color, and if I don’t, I tell my nail technician and he knows that I can’t tell colors.  Here is another great example that happened just today.  I went shopping and had a few different pairs of shorts in my hand which I thought were white.  My son informed me that one pair was neon yellow and that I that I needed to put them back.

I've been asked more than once how I can be a teacher if I can't see.  First of all, I can see, just not as well as other people. Further more, I think it makes me a great teacher,  it means I can't be stationary in my classroom.  I have to be on level with my students. I am constantly moving about, down on the ground and joining them at their tables. 

To this day some people are still uncomfortable with my disability, but I have come to accept that is on them not on me. You can’t catch blindness. If I make you uncomfortable, you need to ask yourself why that is.
So here I am, I made it. I was that shy kid in the back, that wallflower afraid to draw any more attention to herself than there already was.  I pursued a career in teaching although it wasn’t my original path, it was where I was meant to be. I know hold a Master’s degree in Education with an emphasis in Curriculum Development and ESL When I list all of my accomplishments, I know I have come a long way. 
  • Co-authored two books for Creative Teaching Press
  • CA kindergarten Conference Presenter
  • CRA Presenter
  • Intell Teach to the Future Teacher of the Year 1999
  • Blog writer since 2011
  • Teachers Pay Teachers Author Since 2011
  • Scholastic Top Teacher Blogger  Author 2012-2013
  • 21st Century Teacher of the Year 2016
  • Scholastic Top Teacher Blogger Author 2017-2018
However, when I see those boxes of crayons hit the shelves at back to school time. I can’t help but think of all the times that the teachers would tell us to take out our box of coloring crayons. Immediately I’d feel that pain in my stomach as I knew I’d have difficulty knowing which one to use and the print of the words would be to small to read. To this day I have to look at the wording on the crayon or I ask one of my special helpers to hand me the color that I need. When you are a kid, you don't know to ask for help and when I did I surely wasn't going to even if I did need it.

People ask me all the time if there is something I wish I could be able to do? Drive is usually my answer. I am lucky that I have a supportive family. However, there are some days when you just want to wander the aisles of Target by yourself. Thanks goodness for online shopping; Amazon Prime has become my life-line.

I've learned a lot over the years, no matter how much we have evolved as a society some people just haven't.  People say things without thinking such as "do you need glasses". I'm a grown woman, don't you think that if glasses could fix the problem I'd wear them.  I used to try and make excuses and say I forgot them at home. At some point I realized, I shouldn't make excuses for myself and I shouldn't try to make others feel good even though they are being insensitive. Now I tell them the straight up truth. I'm legally blind, glasses can't fix what I have.  People are curious and I am always willing to talk about it,  I'm a rare lucky individual, 1 out of 30,000.  

So, why did I write this post? I wanted you to know a little more about me. I also wanted you to think what it would be like if you were looking through my rose colored lenses. I know teachers now are much more accommodating to students with disabilities and more aware or at least I would hope so. Should you ever get a student with this condition, feel free to reach out to me. I’ve got lots of tips and tricks, that if only someone had known about for me could have helped me be more successful along the way.  


Tiffani Mugurussa teacher blogger at time4kindergarten.com tells her story of growing up with achromatopsia

1 comment

c2hoff said...

Thank you for sharing your moving and inspirational story, Tiffani!