Thank you to Ian Christy, Illustrator Extraordinaire, Designer, & Cool Rockin’ Dad for the fantastic illustration in this post!
Imagine you were walking down the hallway of an elementary school. As you walked, you saw brief glimpses through the slender window in each classroom door. In one class, a teacher stands writing at a whiteboard, her students taking notes. In another classroom, children gather on a rug for story time.
In the last classroom on the left, you see a similar scene. Students sitting at their desks, raising their hands, doing their classwork. You notice that one little girl’s desk is surrounded by a single layer of limestone bricks.
The next day, you walk down the hallway again to see the usual business of learning. Some children are walking around their room going from station to station. One class watches the teacher do a science experiment at the front of the class.
In the last classroom, however, you see the little girl’s desk is now surrounded by bricks stacked about 2 feet high. She is sitting quietly. No one seems to notice them. The teacher stands at the front of the class continuing the lesson. The students continue raising their hands.
You become concerned. You return every day. Every day you look into the last classroom on the left. Every day, the wall of blocks gets taller and taller. Every day, the little girl sits quietly, growing more isolated than the day before. Every day, the classroom moves on around her. You begin to feel anxious for the little girl.
She is being walled in, cut off from her teacher, her peers, her classroom, but no one seems to notice. You stand at the window day after day and watch as she disappears behind cold, hard stone. 
You knock on the door and ask the teacher why the little girl is being walled in. She looks at you as though you have lost your mind. She cannot see the wall.
You run to the principal’s office to tell him that the little girl is being enclosed in a kid sized stone tower. The principal goes to look for himself. He doesn’t see the wall either.
Every day the wall gets higher.
You demand a meeting with the principal, the teacher, and anyone else who works with this little girl.
You show them pictures of stone walls. You bring them research about limestone. You find articles from education experts who have studied children behind stone walls for decades, and, who have concluded (surprise!) that stone walls make learning very difficult.
Children cannot learn when they are cut off from everyone else. Stone walls = bad for learning.
The team considers your presentation. They reluctantly admit that – maybe – they noticed the wall from time to time. An aide admits she tripped over a brick once but didn’t want to make a fuss about it.
Someone suggests that the stone wall may not be the little’s girl’s only problem.
“Sure,” you reply, “ she may have other issues, BUT, that STONE WALL IS NOT HELPING.”
The educational team takes another couple of weeks to develop a learning plan for the little girl.
Every day, the wall gets higher.
At another meeting, the team tells you that a teacher who works with “stone wall children” will take the little girl out of the stone wall to another room for 30 minutes a week.
“But, she’s sitting behind the wall for every other minute of the school day!”
Then, Rod Serling comes out of nowhere, pats you on the head, mumbles something about how even The Twilight Zone wasn’t this surreal and disappears.
This seems ridiculous, right? Or, sadly, mind numblingly familiar?
I have spent sooooo much time trying to explain to people that my kid does not have easy access to the world with her visual system.
I have walked by “Library Time” (my personal pet peeve for children with vision loss in a traditional school setting) where I’ve seen children with CVI sitting passively at tables in the back of the library while the librarian reads a book the size of a magazine to the children grouped at the front.
I have found “art projects” in my daughter’s backpack that were clearly colored in by the well meaning aide who finished it while Eliza was self-stimming in the back of the room. (I know this because I went to art time one day and found everyone – Eliza’s aide included- sitting at the table coloring, except my girl, who was laying on the floor, rocking. I cannot make this stuff up.)
How are these examples any more ridiculous than watching in panic as a child is enclosed in stone, a situation that no one else seems to find problematic?
They aren’t.
To my fellow CVI families,
2018 is a new start.
There will be opportunities for us as a community to work together to raise awareness about Cortical Visual Impairment and to demand that our children be educated in a manner in which they can learn.
In this year and every year that follows, we must demand access and expertise.
Stay tuned
and
Happy New Year!
CVI Momifesto 
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