Well, I’m writing to you from the frozen north. And I mean that literally. Even though it’s June, when we woke up this morning, it was 32 degrees Fahrenheit. You don’t have to tell me how wrong that is.
I have been thinking a lot these past couple of days about how secondary disabilities can often be even more difficult to deal with than the ones that people think should be the most problematic. I know that many of us have additional challenges to contend with: psychological conditions like depression, or physical disorders like arthritis or chronic fatigue.
Nearly 7 years ago, I was in an accident that left me with five fractured vertebrae and a broken right wrist. As a result, I now have residual pain, a neurological condition called Restless Legs Syndrome, and what appears to be Fibromyalgia. I was speaking to another visually impaired friend about these types of disabilities awhile back. She told me that if someone appeared and offered to magically take away only one of her disabilities, she would choose her chronic fatigue in a second. I knew exactly what she meant.
Even though, on the surface of things, blindness seems like it would be the harder thing to live with (what with all of the technological bells and whistles and issues around access and accommodations), it is a known quantity. I know how to “do” blindness. I know braille, how to use a screen reader, and how to explain my needs to other people when I have to ask for their help. I’m used to all of the attention my dog gets when we’re out and about, and all of the tactile labels and talking gadgets around my house. In short, when I wake up every day, my blindness is still there–still the same. I know that isn’t the case for everyone. Some of you have eye disorders that are unstable or degenerative. For me, though, my eyes are prosthetic, and so I always see the same thing–nothing.
This, in and of itself, can be difficult to make people understand. I get asked all the time. “How much do you see?” When I respond with “nothing,” they persist with. “But you must see colors or light.” I continue to insist that I see nothing, and they continue to insist that I must see something, until I’m forced to tell them bluntly. “My eyes are made of plastic.” It horrifies them, but they definitely stop asking questions about my vision.
I think I could have a lot of fun with the fake eye thing, if I were just a bit more twisted than I already am. I was in a subway station one time, when the ticket taker asked to see my special photo ID transit pass for passengers with disabilities. When I showed him the ID, and pointed out that I probably wouldn’t be using a guide dog if I were sighted, he responded that I could have been faking it. Right. Because I want to ride the subway for free so badly, that I’m willing to make up a disability. I had this crazy urge to pull one of my eyes out, slap it down on the counter in front of him, and say. “Fake this, buddy.” People can be so incredibly dense sometimes.
In another subway riding adventure, I walked into the subway station, and when the person on duty saw me with my dog, they buzzed me through the turnstiles. As I was walking away, this guy yelled. “Hey. Why does she get to ride the subway for free?” I looked over my shoulder and yelled back. “It’s a perk.”
Speaking of perks. How many of you have had people say things to you like. “You’re so lucky you get to take your dog with you where ever you go.” Have you ever wanted to tell them. “You’re so lucky you don’t have to take your dog with you where ever you go, because … um … you can see.”
Anyway, in spite of all of that, I’d gladly keep my blindness if I could ditch the pain or the fatigue. Besides, without my blindness, where would I get the material for all of my strange stories?