Foundation Fighting Blindness, I am Not Against Medical Research for a Cure for Degenerative Eye Conditions, Just Your #HowEyeSeeIt Method of Raising Money

Disclaimer… this is an emotionally charged post, so pardon my neglect to catch all my typos.  I just got off the phone where I was interviewed by a woman in the Louisiana Tech Professional Development and Research Institute on Blindness.  This woman is currently in the graduate program for teachers of blind students.  It wasn’t until I was recounting with her what it was like for me as a child with vision loss, not until I shared with her my struggles with self-worth, struggles in school, and comical attempts to hide my blindness that I realized why I so strongly oppose the Foundation Fighting Blindness Campaign.

Some of you have been following my blog since the beginning over five years ago, and some of you have just recently discovered it.  For my dedicated readers, I apologize for letting so much time go by between real posts.  Life gets real crazy when you’re busy living it, and before you know it you find yourself in the first days of fall and you’re still working on your,” How I Spent My Summer Vacation,” blog post.

So what is all this hype on the Foundation Fighting Blindness #HowEyeSeeIt Campaign exactly?  Basically, FFB is asking people to partake in their blindfold challenge to attempt to see how hard it might be to sort coins, keep track of children at a park, and do every day tasks while wearing a blindfold.

Let me get something straight.  I am not opposed to Foundation Fighting Blindness and medical research for degenerative Eye conditions.  I may not have an eye condition that effects my retina, but both my daughter and I do have a degenerative eye condition.  It may or may not come as a surprise to many of my friends and family that I have lost a significant amount of eyesight.  Does the possibility of loosing every bit of my remaining eyesight scare me?  Absolutely not!  Does the possibility that my daughter might also lose a majority if not all of her eyesight scare me?  No, not at all!  People ask these questions to my husband all the time who works in EMS, so he’s seen his share of tragedy, and his answer is usually something like, “Whether or not she looses her remaining eyesight doesn’t change the person she is.  She’ll still be an awesome mom, and partner in life.”

So here’s a little bit about me, my story, and why I oppose the Foundation Fighting Blindness #HowEyeSeeIt Campaign.   Note to the blind people reading this that the eye in #HowEyeSeeIt is spelled with the word “Eye,” like eyball and not with a capital I.

My family immigrated to the U.S. just before my second birthday.  After fleeing Cambodia, spending years in Red Cross refugee camps in Thailand and the Philippines, my parents found themselves in Northern California searching for an answer to their daughter’s vision loss.  They barely spoke the language, drove up and down the state seeking specialist and being told things like, “She’ll get her eyesight back,” to “We have no idea what caused this,” to “She may possibly one day  go blind.”  I can’t even imagine to put myself in their shoes.

My first memory of my blindness making me feel different, and beginning the, “Fake it till you make it,” phase of my life came in Kindergarten.  A boy held a book to his face and asked me why I read like that.  So, from then on I pretended to see, pretended to be what I wasn’t, pretended that nothing was wrong.  I went through the motions of pretending to do my school work in the classroom and spent hours on hours really doing it at home.  It finally got to where the students and teachers would just skip over me when it was time to read out loud in class.  My blindness was never spoken about, never acknowledge, I, we, just pretended it wasn’t there.

One question I was asked tonight was, “If you could go back in time and change one thing, what would it be, and what wouldn’t you change.”

My response?

If I could go back in time and change one thing, I would have made sure that my mom and dad found the National Federation of the Blind during those first scary years dealing with their daughter’s blindness.  As for what I wouldn’t change, I would not change the fact that I am blind.  Without my blindness, I wouldn’t have a vast network of friends whom I consider family all over the country.  Without my blindness, I would not have had the opportunity to travel to China to speak to blind children.  Without my blindness, I probably would have never met my husband and had my beautiful children.  Without my blindness, I would not be an advocate for blind people and blind children like my own daughter.

The #HowEyeSeeIt blind fold challenge is degrading to all blind people.  It perpetuates the low expectations and negative misconceptions about blindness.  For the person facing the possibility of loosing their eyesight and going blind, these videos make blindness and blind people look like blindness is the end of the world.  I’ve read comments from supporters of the campaign that blindness was so scary for their friend, it nearly drove them to ending their life.  The loss of eyesight is not the end of one’s life.

The worst part of this whole campaign is, in this current day and age blind parents are being questioned on their abilities merely on the fact that they are blind.  Babies are being taken from blind moms because social workers believe the blind mom has no possible way of knowing how to take care of a baby.  Meanwhile, crackheads child abusers, and neglectful parents continue to keep their children.

As the hour is getting late and my kids need me, I will leave by saying, “That’s all I have to say about that.”

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4 thoughts on “Foundation Fighting Blindness, I am Not Against Medical Research for a Cure for Degenerative Eye Conditions, Just Your #HowEyeSeeIt Method of Raising Money

  1. Pingback: Performing in Blindface – Adventures in Low Vision

  2. Pingback: Guest Post: Performing in Blindface |

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