Living with vision loss in a sighted world

Braille might help when reading a book, but it won’t help you read a room! Two moms and a teen share tips on how they cope—or help someone else cope—when somebody in the family has an inherited retinal disease (IRD). 

 
 

Transcript

[On screen text]
Living with vision loss in a sighted world.

[On screen text]
Lorie
Living with RP

Lorie: We live in a sighted world. It’s not made for people with sight impairments.  You learn to maneuver through this world in a whole new way because you start to use touch and hearing as your primary senses.

[On screen text]
Sofia
Living with LCA-IQCB1

Sofia:  I don’t usually read in braille or in large print.  I generally listen to books on audio.

[On screen text]
Laura
Sofia’s Mom

Laura: We’ll do sighted guide, where she will hold my arm.  Or, she has the cane to be independent.  But I try to tell her, and she’ll look to me to cue her, on the things that the cane can’t tell her or my arm won’t.  Which is, you know, “everyone is wearing jeans” and “you’re blending right in.”  I’ll sort of cue her like we are on a movie scene so she can kind of tell who is where, what’s going on, if she’s got friends, you know, at one o’clock…. 

Lorie:  My husband and I, we have a code.  Where we will be in very dim lit places, it’s very difficult for me to navigate.  I don’t have my cane out, per se, and he’s acting as my guide. And, somebody will come up and he’ll introduce me and I won’t even know that their hand is out for me to shake it and he’ll just whisper in my ear, “hand.”

Sofia:  At school I have a BrailleNote®, which is like a brailer, a sort of a typewriter for blind people.  I have technology so that I can see what a teacher is doing up on the board on a screen that is closer to me. 

Laura:  I fully expect her to live as normal a life as she could.  She’s probably going to go to college and rule the world someday, the way she is headed.  So, I don’t so much worry about her. 

Laura:  Overall I live a very healthy, fulfilled life.  Yes, I’m being robbed of my eyesight, but I’m not being robbed of living. 

Share this story!

You might also be interested in:


 

Disclaimer: The opinions and references found in this patient story belong to the author alone, and do not necessarily reflect the opinions of aSharedVision.com or Spark Therapeutics. Spark Therapeutics is not responsible for the accuracy of any of the information supplied by third-party sites referenced in this story.