Struggling with Identity for My Child Who is Blind

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 was…I was creating that identity, and certainly not speaking from personal experience.

I’m a parent of a child who is blind, but I’m not visually impaired myself. I openly admit that I don’t know what it is like to be blind; I can only speak from other people’s experiences. I can say that I know someone who is blind and an attorney…or I know someone who is blind and has a family…or 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 I’ve shared. That doesn’t make them “Emily Experts” but it does give them knowledge provided directly by me…not by somebody else.

Due to Eddie’s speech delays, I was recently at a training on communication. If you want more information, you can go to 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 actions…and then provide them with an identity…right or wrong.

For an experiment, I asked my daughters to describe Eddie. My youngest said, “Blind, on a diet, likes eggs and ham, and doesn’t like macaroni and cheese.” My oldest said, “Blind, autistic, younger than me, likes Panda Puffs, and doesn’t like to go to the bathroom.” Now, I think it goes without saying that Eddie probably wouldn’t describe himself that way…at least, that’s 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 it’s been on my mind a lot. Communication isn’t just for getting needs met; it’s 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 can’t wait to hear, “I didn’t mean that!” “That’s not why I chewed gum!” “I do like macaroni and cheese!” “You’re so dramatic!” 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.