This past week I honored those on the margins. I did a presentation on disability. It was nice to speak my truth, and to have others receive that truth from me.
There are realities that those of us with both vision and hearing loss face. When we step out our front doors, the world can be a hostile place.
My sister, who was more blind than I have been, expressed her issues with appearance this way: “If you cut your hair, I may not recognize you, so identify yourself.” As for me, I need several hours of “face time” with you so that your facial features get imprinted on my brain. Putting it all together for me is difficult because I spent the first year of my life blind.
The first year of development is when our brains learn to recognize and discriminate objects and people. As humans, we need to be able to identify people in all their detail, unlike how we would look at simple chimps or monkeys. We need a highly effective visual discrimination ability, and I have had to learn to do it because visual recognition skills develop during the first year of life. It’s been hard to do, and I’ve done much of it as an adult when I’ve been able to fully understand what I’ve needed to do to learn people’s faces.
Stepping outside of my house also unleashes so much helpfulness in others. Then, suddenly, when I need a helpful soul, they are nowhere to be found. I think this sense of helpfulness is more about people being uncomfortable with the disabled, and needing to relieve their own discomfort. I’m fine with who I am and what I must do—even the difficult things.
Right now, the city I’m in is redoing the main street to create a better bus line. I’m cut off from my universe! The city didn’t ask me how I’d be affected, and once again I’m out in the nowhere, and they’re already two months behind.
“Where’s my village?” is something I ask more frequently now. I think those in the disabled community are asking this just as much as I am these days. With the fact that villages are disappearing, I shouldn’t be shocked that, once again, I’m posting on the cruel nature of what life can look like for those of us who must cope with a less-than-abled body.
I reflect back to being asked if I’d change it all for sight. My answer is still a resounding NO! It is all about who I am and what my disability represents. To be honest, I can’t imagine who I would have become without the disability. As much as I’d like to be able to see like you and hear like you, I wouldn’t be able to deal with it now. It would be as if my brain would struggle to make sense of it all. That really is a gift I would refuse.
Just as much as I love my petite body, I do love who I am in it. So, maybe living on the margins is also about accepting ourselves on the margins.
I have said that disability is an equal opportunity discriminator: it doesn’t discriminate at all. It doesn’t care about gender, race, age, intelligence, financial status, or anything else. If your number comes up, you’ll need to learn to cope with it. So, be kind to me, as someday it could be you needing the same help you want to give me when I may or may not need it.
I was saved the trauma of having to deal with disability later in life. In an odd sort of way, I’ve had it a little easier than my siblings, who had to greet their disabilities in their thirties and forties. I grew up this way. They each had to deal with another type of existence and coming to terms with the losses that disability brings, as well as the belief that they can still do it all.
I step out my front door, walk to the bus, and then a train, and am thankful that they are there for me. I still am dwelling on the margins of society. I’m self-sufficient in a world that prizes ability.