Crafting Disability

a hand points a brown wand into the airIt can be a bit boring, my visual impairment. At least  as my condition remains stable. All dark on the left, light-sensitive and unclear and peripherally compromised on the right. At worst, the junior high stage crew runs the lights for the scenes of my life. At best, it’s as if a dedicated, seasoned local theater volunteer throws my optical switches. That’s life.

Why can’t disability be more sensational? It would be awesome if we could choose visual disabilities featuring the soft lighting and pleasing angles of Annie Leibovitz photography. I dream.

One summer my optics delivered a dazzler. For a few months due to extra light distortion, I acquired Impressionist Vision. At least that’s what I called it. Places full of many pieces–seats in an auditorium, cars in a parking lot–became blobs of mottled color. By considering my vision in the style of my favorite artists though, it distracted me from the uncertainty of my medical condition. Whatever works, right?

One afternoon after an additional surgery, I sat on the warm brick steps of my porch. I held my cell phone to my ear, listening to my dad. He asked about my current visual acuity. I stared into the grass and tipped my head in thought.

“Well. It used to look like waves of green, maybe some yellow.” I said, “but today it’s like I can kinda see…individual blades again.” We both fell silent. A tear rolled down my cheek. After a few moments, my dad praised the improvement. I’m pretty sure I heard a sniffle alongside the support.

After things stabilize, it becomes routine to live with a visual disability. Your get used to what your eyes and brain perceive. And, better yet, it’s possible to be grateful for the things like rude gestures you miss. Boring or interesting, I don’t take my vision status for granted. Meanwhile, perhaps the future in science will reveal artisan retinal cells. Creativity requires imagination.

If you could gain a tailored disability, what would you create? Symmetrical and vibrant Wes Anderson redecoration in sight? The calm zone of underwater hearing? The Willy Wonka version of taste? The world could be at your fingertips with an acquired disability. Tell me about it.

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12 Comments Add yours

  1. When you talked about a tear rolling down your cheek it took me right back to (I wish I could say that one time, but it was quite a few times) when things got so rocky. I remember one time when I was at the retina specialist’s office and I heard a lady say “I have 20/400 vision?” At the time mine was 20/200 and I thought (more like I actually said to the doc) “I hope this is stable because I can’t imagine what 20/400 vision would be like. It went to 20/400, 20/800 on down to now finger counting but as you say it’s stable now and there are some days when my silly brain convinces me that I can see more than I can. I’ll have to think on a tailor made disability.

    1. Oh yes, those times when you think more loss is unbearable but somehow we manage. Also, I’m so curious what your tailored condition would be!

      1. Just the thought is straining my poor little brain 😄

  2. Trisha says:

    I would choose some type of hearing disorder, like the neighbor’s drumming sounding like a waterfall. Or, the inability to hear rap at all. Instead, I seem to have bionic hearing for some things and yet can’t hear when my phone is ringing. :/

  3. Casee says:

    I can’t think of a tailored disability but my dream superpower is invisibility. I want the kind where even my clothes and anything I am holding can be invisible too. I don’t want to get naked to use my superpower. 🙂

    I live in fear of my eyes getting worse. They have stabilized but as I have watched someone close to me struggle with vision loss I know that you can manage but it is one thing to watch someone else adapt and another to have to do it myself. I am a coward about these things. I know there is a way to live on with bad vision but I don’t know if the will is there for me. Some things I won’t know until I have to deal with them. Hypotheticals about my future health do me no good. I will enjoy the vision and health that I have now and hope that whatever the future brings I will be strong enough and have the support system to face it with dignity.

    1. Fear can take the joy out of the present so quickly. It’s hard to cope with loss, but adapting and learning is rewarding. I thing struggling is as human as overcoming. You’re not alone, Casee.

      Invisibility would be neat, too!

      1. Casee says:

        I’ve given it some thought and my tailored disability would be the inability to hear cruel and unkind comments said about others or myself. Such things are never edifying to the spirit anyway.

      2. To paraphrase a quick witted Irish great aunt ‘all cuts should be taken as compliments’. I absolutely agree with you, Susan.

  4. My sight loss is age related and with increasing age come other, smaller, disabilities like dodgy knees and fallen arches. On reflection, I think I will stick with the disability I am learning to adapt to. You are right, Susan, it can be rewarding to adapt to new skills and attitudes but, speaking from experience as someone approaching 80, I wouldn’t wish for invisibility. It will come soon enough and is no fun.

    1. At least wisdom continues to be gained alongside age! Good to hear from you, Bridget.

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