The Hidden Thoughts of Vision Loss

Back in 2017, Dan Roberts made up this sweet, little list he named “Hidden Thoughts of the Visually Impaired.” He put these hidden thoughts out for discussion in group environments so we, the visually impaired of the world, can sort of “let it all hang out" as we ...errr, complain about some of the utter nonsense we have to deal with from those pesky, totally sighted people.

For example, Roberts talks about our ability to see things in our peripheral vision. This, to the sighted, is called “How the heck did you see that?!?! I thought you were blind!”

Explaining macular degeneration

Is there any use in trying to explain central vision loss? Probably, to some, but when it happens repeatedly, it does get old.

If you do manage to get them to understand you can see actually many things, you get embarrassed when you have trouble seeing things right in front of you but on a cluttered background without a lot of contrast. Now those pesky, fully sighted people are distressed because you told them you can SEE! “How come you can’t see that? It is right there.” See the sentences starting with “is there any use…” and insert here.

Trouble reading with macular degeneration

Taking forever to read and not being able to decipher handwriting I have touched on somewhere before, but it is relevant here as well. Somewhere I read - slowly - reading speed using the peripheral retina is something like one-sixth of your normal speed. The farther away from the macula your “sweet spot” is, the slower your speed. Refer back to “Is there any use…”

Vision loss is a communication disability

Trouble comprehending the meaning of statements is another hidden thought Roberts addresses. Once again, I wrote about this in my own blog a while ago, but my recollection is this: Something like 70% of all social communication is visual. Vision loss is not just a communication disability because you can no longer read. It is also a communication disability because you cannot clearly see faces. Would you pesty, sighted folks not have to question meaning if 70% of the input was filtered out for you? Thought so.

Toxic positivity and macular degeneration

Number 11 - in no particular order - on Roberts’ list is getting tired of overly positive people. I have frequently referred to myself as a Pollyanna. I know I can get on people’s nerves by being optimistic. However, I don’t feel I am being unrealistic. Right now I am getting progressively more centrally blind. Fact. There is nothing available right now that can stop that or restore the vision I have lost. Fact and fact. Just the same, I have been blessed with support from excellent people and excellent technology and I believe in my heart as well as my head, I will hopefully soon be blessed with excellent emerging treatments. Fact, fact, and fact.

Pity mongers and vision loss

Speaking on a personal note, my hidden thought is sort of the opposite of thought number 11. One of my pet peeves is about pity mongers. Give me anything but sympathy! Don’t “poor you” me. Pity tells me you think I cannot. I cannot function. I cannot succeed. I cannot forge ahead. Don’t weigh me down with your pity because I don’t have time for it. If you can’t help me, don’t hinder me. In the famous words of General Patton “Lead me. Follow me or get the hell out of my way”....huh. Saying that felt kind of good.

Roberts lists 30 hidden thoughts in his article. I added my own for 31. How many would you like to add? Go ahead. Get it off your chest. After all, you listened to me.