Contributor Erin Jepsen – The Blindness Spectrum
An event stands out from the haze memories in my childhood. I sat in a van with several other grade school aged kids. Taking off my thick glasses, I rubbed my tired eyes with a sigh. This led to questions from the others about how much I can see without my glasses. Rather than attempt a detailed explanation, I said the obvious, the trope that society expects from thick-glasses-wearers. “I’m blind without ‘em,” I foolishly said.
Immediately, this led to bored children asking me to count fingers, try to get me to blink or look. When it eventually worked, and a movement caught my eye, they accused me of lying and faking. As I look back on it, I both cringe and sigh. Finding out much later that I actually do have a mild vision impairment makes me look at that past encounter differently. To me, it forcibly demonstrates a fallacy in our modern culture and language. To most people who haven’t had to think about it, the word “blind” means “no light perception.” Period. Blind means black. You can see, or you can’t. Hollywood hasn’t helped us combat this stereotype, and for thousands of blind people who have a degree of sight, confusion occurs daily, causing people to think we’re either faking blindness, or that we should act solely as a sighted person, since we can obviously see something. We are forced to choose one or the other, blind or sighted, and for those of us living in the borderland between, life can often be very difficult.
In my thinking, we could correct this problem by taking a page from autism. Everyone accepts that autism contains varying degrees of severity, because the language we use to identify it clearly shows this. We say “They’re on the autism spectrum,” and people get that the person may be high-functioning, or they may be more impaired. There even exist separate conditions that are similar to high functioning autism, such as Asperger’s Syndrome. A person who is diagnosed as having Asperger’s might need only a few supports to be successful in school and work.
With blindness, we need a similar clarity of language. Instead of “I am blind,” although completely acceptable to use; it might be clearer to say something like “I am on the blindness spectrum.” For me, I have enough sight to function as a sighted person for a good portion of my time, but I still need some non-visual techniques to be successful, and I don’t drive. My daughter, who has a limited field of sight in only one eye, is in a different place along the spectrum. Instead of “legally blind,” which still seems vague, it would be easier to have the concept of a continuum, with different flavors of vision, from photophobia to reduced field, to loss of central vision, to night blindness, to lowered acuity or other experiences.
Maybe I’m an idealist. I just wish that our language accommodated a clear concept of the experience of blindness with regard to low vision, not just blackness. As a blind community, it might be worth continuing the dialogue regarding the language we use to identify ourselves in order to make it as clear as possible. Perhaps the answer is education, to teach people that the word “blind” actually means a spectrum. I’d love to hear your own stories and ideas in the Reader’s Forum.