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“You Don’t Look Blind”

EyeCure - don't look blind 2 bPerhaps 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.”


31 Responses to '“You Don’t Look Blind”'

  1. Odysseus says:

    I wrote a poem addressing the daily challenge:

    MORNING IN MIST
    (Reflections on Subdued Light)

    Good morning,
    or will it be?
    Avoiding the unseen,
    others unaware

    “Sorry” in reserve
    (will be repeated so many times);
    Didn’t mean to bump into you,
    seriously, I didn’t

    My near blindness
    has given me vision,
    to see what others cannot

    Maybe one day
    I can join the others,
    and show them
    what life is about

    OM
    January 2014

  2. This article hits home because I’ve experienced some of these situations and it’s sad at times.I’m not waiting on the world change, I’m going to be the change the world needs. We have to educate people on blindness.

  3. Susan says:

    Living with a visual impairment is never boring. I would love to read more responses, it was so helpful and even entertaining to see the range of experiences people have encountered while just trying to go about their days. Thanks for putting this together.

  4. Sharon R. Long says:

    I am in the exact position with the very same eye disease.y experience mirror this young lady’s experience. People can often make it even harder than it is. Pit is difficult to have to put so much confidence in others to guide and assistance no matter who it is. However, I trusty God. I want to help others who face the same issues. May God richly bless you all. Oh I neglected to mention my diagnosis was made in 1978.

  5. Sharon Kohn says:

    Am legally blind; but with good large vision, not small. Always am told, you don’t look blind. In our support group we say: if you don’t have a guide dog, or a white cane, or bob your head like some famous personalities, people do not believe you are blind. lol

  6. Hailey Foster says:

    I didn’t see this original post, but one time I was walking across an intersection in San Francisco near a BART station. I have RP, so I still have my central vision, but no peripheral vision. I was using my cane, but could see a man was walking directly toward me, so I moved to one side. As I did so, he shouted “I knew you weren’t ****ing blind!” I was so stunned I just kept walking with a bewildered look, but you can imagine what I wished I’d said later!

  7. CHUCK says:

    I HAVE Stargardt disease=I’M 63 AND HAVE BEEN LEGALLY BLIND FROM MY EARLY TEENS –AT LEAST THAT IS WHEN I WAS PROPERLY DIAGNOSED YA KNOW –THE BUS THING HAPPENED TO ME WHEN I WAS YOUNG A LOT —ALSO WHEN I TYPE ON FACE BOOK OR IN EMAIL’S SOME FOLKS THAT DON’T KNOW ME –SAY BECAUSE I TYPE IN CAP’S ===WHY ARE YOU SHOUTING –SO I HAVE TO EXPLAIN ==BUT AS FAR AS PEOPLE NOT BELIEVING YOUR LEGALLY BLIND THAT RUN’S IN THE HIGH PERCENTAGE— EVEN CLOSE OR SUPPOSED CLOSE FRIENDS—LIKE I SAY TO FOLK’S THAT HAVE LOW VISION ==FRUSTRATION IS YOUR MIDDLE NAME NOW –SO DO THE BEST YOU CAN=== AND NEVER STOP TRYING TO DO ANYTHING A PERSON WITH NORMAL VISION CAN DO AS LONG AS IT WON’T HURT OR KILL YOU —–GOOD LUCK ALL MY LOW VISION AND TOTALLY BLIND FRIENDS

    • Alex says:

      Thanks for your information a Chick. I like to hear from ppl in the same situation.I also have stargardt’s disease. I try to maintain a normal life. Sometimes it is more difficult then others. But like you said I try to so everything someone with normal vision does. Hopefully they will find a cure soon

  8. Jen Ack says:

    I think we should start hashtagging with either #visuallyimpaired in general or the specific condition, #stargardts, to help raise awareness.
    If this is already happening, I haven’t seen it yet.

  9. this is so disheartening to me! My 8 y/o has congenital Nystagmus, and people just don’t understand visual impairments, I am constantly asked “can’t she just wear glasses?” Seriously did you think I forgot to go that route!?!? Ps she does wear glasses!

    • Ben says:

      I too have Congenital Nystagmus. I was diagnosed when I was 3 months old, I’m 31 yrs old now. I’ve deal with many ignorant people. Glasses don’t help at all, so I don’t bother wearing any. Random people have pointed at me while walking down the street yelling “you’re on cocaine” or a group of early 20’s girls “Crazy eyes, crazy eyes, crazy eyes”

      Joanne, have you heard of The Gavin Herbert eye institute in California? There is a relatively new treatment, not a cure. They’ve only treated about 31 people. Look into it. Don;t get your hopes up and think before you do this.

  10. Zuby Onwuta says:

    I face this issue at work, home, with family, everywhere.
    So I’ve done something about it !
    I’ve invented a way for visually impaired folks to see better just by thinking.
    My work is at
    http://www.thinkandzoom.com

    Pls put me in touch with Dr. Rose & Ben S.
    I met with them at the FFB HQ in 2013.

  11. Gloria Saavedra says:

    I get that all the time. I have peripheral vision and or depth perception soon top of it all I am amputee so I have all my service dog does all

  12. Jason says:

    People say if you are blind why do you look at me when I am talking to me and I say don’t believe me here hold my eyes,of course I take them out.

  13. AJ says:

    Well, I have a friend who has a friend that has just discovered she has Retinitis Pigmentosa. She’s quite afraid because she’s pregnant and might as well pass this disease to her child. The story moved me. If only I could help her. Thanks for the post. 😀

  14. David J says:

    A friend of mine in NC was signing up for blind services and the social worker said he needed a eye doctors note. After some heated discussion that he was totally blind, he took out his prosthetic eyes and put them on her desk. Ended the discussion quick but he still needed to get a Doctors note.

  15. Roz says:

    Yes, I am legally blind, I have partial vision in my right eye, blind in the left, I have no perephial vision but as you go blind, you also learn to cope with it to some extent. When I was working at a hospital, mostly on night shift the administrator told me I was a hypocondriac even with proof in front of him of my vision loss. When I happened to work afternoon shift occasionally, I was told I was not a “team player” when I asked the staff I was working with to put things back where they belonged so that I could also find them. I was sacked for my visual impairment as I “might be a hazzard to myself and to others” … the pressure they put on me make me so sick and stressed that I was beginning to make mistakes, so that only gave them another excuse. The boss refused to buy anymore “visual aids” so that I could continue working. Now I am on a blind pension, it has definately made me suffer the loss of feeling a part of a community and have the ability to work.

  16. raul guevara says:

    i have RP too & it looks like my bro in law doesn,t like me to stay in their house anymore is there a place where i can be accepted to stay wid people like me so we can help each other, im a new immigrant came here last august 2015 and badly need help here in SF thanx

  17. Tracy Stine says:

    I’m Deafblind & get a lot of comments too.
    I’ve made a blogpost about just that.
    http://www.deafblindconfessions.com/blog/throwback-thursday-are-you-that-clueless

  18. Aleshia says:

    I have RP. I’ve only got 17 degrees of vision, but my central vision is still 20/25. This is VERY confusing to MANY people. A woman at Target, who I bumped into, yelled at me and then told me that I ‘didn’t look legally blind’ when I apologized and tried to explain that I didn’t see her.

    Luckily, most people are nice. However, if I get another such comment, I have a very witty and profanity-laden response prepared.

  19. Cher says:

    I have Optic Neuropathy. I have had many, many upsetting experiences, but this is the one that really upset me. I was at my new lawyer’s office to sign some papers. Unfortunately the print was too small, and even bringing the paper to my face, I couldn’t read it. I asked him if he would please read it to me. He smiled and said that it’s okay, most people who are illiterate use the same excuse. I stood up, told him his services were no longer needed and left. Because of that incident, I no longer ask to have anything read to me.

  20. Angela says:

    I’m glad I’m not the only one. I often get “You don’t look like your vision is that bad. Your glasses aren’t that thick” or “Looks like you need some new glasses.” I’ve given up on trying to be nice about others ignorance and bluntly say with a dead serious face that I have an eye disease. I’m on the boarder line of legal blindness because of Stargardt’s. I’ve lost my drivers license and hate traveling now because a lot of people do not want to help when I ask what signs say. I won’t travel unless I’m with friends or family and I used to travel by myself all the time.

  21. l says:

    It is so nice to know that I am not alone in this. I was in a grocery store once, picking something up from a shelf to read it, when a guy nearby said, “I thought you had to be blind to get one of those dogs.” My guide and I had been working for a few years already,and besides tthat, the school name was stamped into the back strap of the harness! All he had to do was look. Another time, I was in a store with my cane. Sometimes, I pull the cane in and trail a bit. I am in crowded aisles or amid densely paqqcked clothing racks. A couple of teenage or twenty something girls behind me saw me do this, and said that there was nothing wrong with me. Shortly after retiring my dog, I participated in a newspaper article to raise awareness about an unsafe street crossing. Several months later, I was going to the same grocery store, and I heard some guy say, “You never see her with her dog.” Like my guide was just for show or something. No, she is just better suited to being a pet.

  22. that’s a great article, I have had low vision all my life and people telling me that I don’t look blind. You just learn to deal it and educate people on it.

    I have a blog on low visions and journey with it

    Please check out one of post about dating and going out to clubs meeting people. All by taking a bus..

    http://demarcocastillo.com/dating-through-my-eyes/

  23. Michael Stone says:

    Thank you for writing this article Rich! Anytime you can write an article that unites those of us with perhaps different conditions but similar experiences you’re giving us quite a gift! Every now and again we need a reminder that we are in this together! Thank you!

  24. Stacey says:

    I was diagnosed with Stargardt’s Disease at 39. I wear yellow lenses which help make things brighter in the dark and allow me to go outside in the sun without getting migraines from the light.
    The comments I get about wearing my yellow lenses cracks me up sometimes. “Are you going to the shooting range?”, “Why are you wearing safety glasses?” “You are just faking it”. I’ve heard it all.
    It’s very disheartening, but all we can do is keep trying to educate the public on our struggles. My boyfriend sometimes forgets I can’t see things and we live together.
    If people knew the depression and struggles we go through on a daily basis, they might be a little more considerate of us.

  25. Daro says:

    I have severe glaucoma no peripheral vision 20/400In left eye 20/100in right so i can see just in the last year is when i started really losing vision fast also have axenfeld mild case they say alot of people dont beleive me neighbors see me working my garden picking up sticks never realized how embarrassing. It can be they make me feel like ive done somthing wrong

  26. Janie Boland says:

    I have RP and although my central vision is 20/50 I have 5 degrees of peripheral vision left. I live this struggle everyday. What makes it even worse for me is the lack of knowledge regarding RP even when going to eye doctors and retinal specialists. I have even been told that I am “not legally blind” by the office manager at my retinal specialist office because my central vision is still fairly good. Everyone treats me like I am fine, like no big deal. It makes me just wish they could try to walk in my shoes with my eyesight for just one day.

  27. Tim Henderson says:

    I have interesting experience being an Ex-Pat in Hong Kong. I was given a guide dog by the Hong Kong Guide Dog Association and absolutely grateful for him. The most common thing people ask me is if I am training the dog. I am going to just start saying yes, as it is easier than explaining about RP. It very funny here, half the people love my dog and the others are terrified. It makes getting through crowds easier.

    The worst thing for me is being tired all the time. I am 49 and have a 3 year od son, so working and then coming home to the Energizer Bunny is difficult somedays. I love to work, but the pressure in my eyes really makes reading a long time and looking at the screen a problem, especially when I am doing graphic design! I am sure I have to work 2 or 3 times harder than everyone else, to make sure I do not make mistakes. Luckily my Law Firm is very supportive. I get to bring the dog to work. Nothing better than that!

  28. Amaya says:

    The ones with the bus drivers hits home and the rude people. I was born with congenital cataracts and received surgery at around age age five or five years old which only made me able to get around without walking into drain pipes.Then two years ago I was practicing for my driver’s test and my glasses suddenly quit working. A few weeks later at work I list full vision in one eye than had it back a minute later like a light switch.It turned out that I had developed Optic Neuritis, well when I went to the specialist appointment my neighbor who drove us there, tried to snatch my hospital papers because he thought I was making it up.

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