Not long ago, I wrote about discussing blindness with children who go to school with my son, Eddie. I wanted to portray individuals with visual impairments in a positive light. The problem wasâŚI was creating that identity, and certainly not speaking from personal experience.
Iâm a parent of a child who is blind, but Iâm not visually impaired myself. I openly admit that I donât know what it is like to be blind; I can only speak from other peopleâs experiences. I can say that I know someone who is blind and an attorneyâŚor I know someone who is blind and has a familyâŚor lots of people that I know who are blind like to use iPhones. These are not my own accounts, but still somewhat reliable.
The reason they have some validity, is because I learned these things from people with visual impairments. They told me what they did for a living, what technology they prefer, and about their children. Just like I often share about my own life, they are no different. There are lots of people that know about me from what Iâve shared. That doesnât make them âEmily Expertsâ but it does give them knowledge provided directly by meâŚnot by somebody else.
Due to Eddieâs speech delays, I was recently at a training on communication. If you want more information, you can go to https://www.communicationmatrix.org/. A colleague of mine who has insight that often amazes me, pointed out that communication gives us a way to have an identity dictated by us. Therefore, children with language delays are reliant on others to interpret their actionsâŚand then provide them with an identityâŚright or wrong.
For an experiment, I asked my daughters to describe Eddie. My youngest said, âBlind, on a diet, likes eggs and ham, and doesnât like macaroni and cheese.â My oldest said, âBlind, autistic, younger than me, likes Panda Puffs, and doesnât like to go to the bathroom.â Now, I think it goes without saying that Eddie probably wouldnât describe himself that wayâŚat least, thatâs my best guess.
We know that firsthand information is the most reliable. The more communication we are capable of, the better we can tell the world for ourselves exactly who we are. I want to thank my insightful colleague for bringing this to my attention, because itâs been on my mind a lot. Communication isnât just for getting needs met; itâs also for creating a self-identity that only each of us can do for ourselves.
My greatest hope is that one day Eddie will read my blogs and call me out on tons of misinformation. I canât wait to hear, âI didnât mean that!â âThatâs not why I chewed gum!â âI do like macaroni and cheese!â âYouâre so dramatic!â Until then, I have the luxury of saying whatever I feel like, and also the extreme responsibility of providing him with some kind of identity. Even if it isn’t perfect, it has to be better than “he’s on a diet” and “doesn’t like to go to the bathroom”…whatever that means.