As is quite apparent from my blog, I am blind (visually impaired, if you want to be kinda politically correct). Because of this, my sense of hearing is used for many more tasks than by those who can see. Because I cannot see, my exposure to the deaf community around me, which I do realize does exist, is definitely limited…. and I got curious about daily life, culture, and hobbies of those who have limited or no use of the one sense that is so integral to my life. Just as blindness and its social structure, perceived limitations, and ways of adapting is far too much of a topic to tackle in one blog post, I have found deaf and deaf-blind culture, use of language, and social interactions far too broad to discuss completely here. So please don’t tell me how I don’t know anything… because I know I don’t have a clue… and I’m OK with wanting to know more.
It all started about fifteen years ago when I joined an email pen pal web site and began corresponding with a young deaf man (in Edmonton, no less( who communicated with the world around him using American Sign Language (ASL). We both ended up marveling that two people who would probably never have met in person – and couldn’t have communicated fluidly if we had – ended up carrying on a months-long e-mail correspondence with no problems. We lost touch after a few months, but I never did forget him. Over the years, with the advent of social media and more affordable technology, I’ve been able to correspond with many who are deaf, hard-of-hearing, or deaf-blind, and am constantly challenged to re-think my own ideas about what life is like, what hobbies can be enjoyed, and how those who cannot hear well or at all can communicate with the world around them. It’s a proverbial eye-opening experience, as I constantly feel I have to challenge those stereotypes myself. And yet I put labels and restrictions on those who cannot hear, just as many around me put them on me because I cannot see.
Earlier this year, a documentary was released about the lives of musicians who are deaf or hard of hearing. I was blown away by it, not because it was particularly well-done (though it is), but by how hard many of these musicians had to fight to break in to the music industry. Many of them faced skepticism and doubt, but kept on kicking and fighting until they got a spot somewhere doing what they loved, in feats eerily similar to what many blind people have to do in order to gain employment.
Coincidentally, over the past six months or so, I have done some reading – biographies by parents of deaf children, one of whom went on a quest to discover the science of sound and language. I have also read (or am currently reading) autobiographies of women – Rebecca Alexander and Joanne Milne – who have a condition called Usher Syndrome, which leaves them with both hearing and sight loss. Both Alexander and Milne have chosen to be fitted with cochlear implants so they can hear the world around them; Milne’s experience in particular was recorded and went viral on Youtube. Reading about this condition in general made me curious about deaf-blindness in particular.
Over the past year, I found myself befriending people through social media who are deaf-blind – some whose deafness is acute while others have been adapting to an ever-changing hearing landscape. When I posed the question to my friends, I received very different responses to my questions. Many whose hearing loss has been progressive after years as a blind person have expressed both publicly and privately their desire for a cure for these conditions. In a very eloquent response, my friend Bruce describes losing his hearing as infinitely scarier than losing his sight, and how he would jump at any scientific advances to improve it. But another friend of mine whose deafness was unexpected and fairly sudden has chosen not to hope for a scientific cure. She says that deafness is now just a part of who she is, “Deaf, red hair, short, blind, sarcastic,” and how she wouldn’t change it.
All of this reading, communicating, and learning leads me to a very uncomfortable place. I’ve unwittingly put so much emphasis on hearing in my own life as many around me do on sight. As I know I have just scratched the surface on deafness or deaf-blindness – communication styles, employment, daily life – I need to understand that my own disability is as foreign to others as deafness is to me. While patronizing language, rudeness, or presumptions are never okay, they are, at their core, born out of ignorance. Ignorance due to lack of knowledge is understandable; remaining in a place where perceptions refuse to change is not.
So for those of my readers who are deaf or deaf-blind, please accept my stumbling, my inadvertent insensitivity, and my seemingly nosy questions. It’s only because I care about you and your life that I want to know more. If I have presumed you are less capable than you are, or placed restrictions on your hobbies or career path or education choices, may I hang my head in shame, because I know all too well what that feels like. And if I have remained silent, or failed to ask questions you wish I would, may this post be a conversation starter that brings our shared humanity to the forefront.