Beacons of Hope

Mar 20, 2015

“You Don’t Look Blind”

People with retinal disease describe their experiences “not looking blind.”

Photo of woman wearing reflective sunglasses

Perhaps the biggest misconception about people affected by retinal diseases is that they see nothing at all. While some have, indeed, gone completely blind, most are in the process of losing their vision. And depending on the person, and the disease, this takes years or decades. In some cases, central vision goes first, in others, peripheral vision.

Either way, vision loss is a huge challenge for those going through it, both physically and psychologically. On the physical end, canes, guide dogs, assistive technology—they can all help. But psychologically, that’s another matter.

It doesn’t help that there are still many sighted people unaware of the vision-loss spectrum. So, when we posted an article on Facebook on March 20, about a bus driver who’d given a woman with RP a hard time for not looking blind, we coupled it with a question: “Have you had to deal with similar situations?”

We got 85 responses, some of which I share below:

“An old friend said, ‘Aren’t you sort of faking it?’ I asked for her car keys. ‘If you want to see real faking, let’s go for a joy ride.’”

“I was at the airport a while ago, and was sitting waiting for my flight and had my white cane with me. Two teenage girls sat across from me and got into a discussion that they did not think I was blind because I did not have those ‘funny eyes.’ This discussion went on for several minutes while I just sat there. I finally leaned forward and explained I was legally blind, which meant I had some vision and also I was not deaf. They both got up and almost ran, just to get away. The look on their face was priceless.”

“I was flying by myself for the first time, and when my husband purchased my ticket he clicked on the spot where it said ‘blind, needs assistance.’ They see a person wearing glasses and don’t believe it. And I got no help from the airline. I did get some strangers to help me find my way from one terminal to the next for my connecting flight. Very aggravating! I now have a shirt for travel that has a large ‘VIP’ on the front and, in smaller letters, ‘visually impaired person.’”

“I teach the blind, and students and I were traveling on the bus. The student who had a cane in his hand asked, ‘Is this bus #21?’ The bus driver said, ‘Obviously, are you blind?’ The student held up his cane and said, ‘Obviously.’”

“I have RP. I went to get a handicapped parking permit so anyone who drives me can park in a handicapped spot. The woman told me I didn’t look blind. I told her, ‘Good, I was going for that age-53, post-menopausal look.’ She didn’t know what to say.”

“I have a friend who refuses to believe I’m blind because once, in a very well-lit restaurant, I could read a menu. Good grief.”

“I am legally blind. I have retinitis pigmentosa. I’m 41 years old, and, yes, I have some vision, but not everyone understands, and I’m so tired of explaining myself. ‘Oh, maybe you need glasses.’ Nope, that is not the problem. Or going shopping and walking into stuff or people because my peripheral vision is bad. People look at you like you’re drunk, or they yell at me.”

“My father is legally blind. He uses a magnifying lens to read where to sign, etc. I try to take him to the same checkout ladies, who know him and have patience. I don’t want to take his independence away. Sometimes people don’t realize just how blind he is.”

“I was in a clothing store with my 15-year-old who has Ushers Type 2. The sales clerk literally questioned what disabilities she had, looking at her up and down as if she were normal. She didn’t want to let us both in the handicap dressing room. I was so pissed, and my daughter was so embarrassed.”

“A bus driver in Seattle did not believe I was blind. I have Stargardt disease and have my peripheral vision. However, I cannot read the bus number on the signs, and I asked him the bus number when he stopped, and he told me to read it. I explained I was visually impaired, and he just said, ‘Well, you don’t look blind.’ Unfortunately, those of us who are partially sighted hear that more often than not.”