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Guest Post: Why We Hide

Introducing Jenelle Landgraf

It gives me great pleasure to introduce you to Jenelle Landgraf, a new monthly contributor to Bold Blind Beauty. Jenelle and her twin sister Joy Thomas run Double Vision Blog and I’m so glad that we connected so that I can share some of their amazing posts with you. The following article which I can relate to so well, was originally posted on October 28, 2015 by Jenelle.

BAM! Blindness Awareness Month is coming to a close, and we have a hot topic to discuss.  

Image is a word cloud in the shape of a profile of a woman containing the words secrecy, vision loss, shame, coverups, fear, stigma, hurt, humiliationJoy and I used to think we were the only ones who tried to keep our vision loss a secret growing up and even into adulthood.  Then we started this blog, and we heard from so many people with similar stories of trying to hide the fact that they couldn’t see.  And then we read Not Fade Away and Now I See You, and discovered still more stories of cover-ups, secrecy, and shame over vision loss.

While it was comforting to learn that we were not alone in choosing to hide our vision loss, it also made us wonder…How many people have tried to hide their low vision at some point in their lives? And why?

Just to be clear, we’re not condoning hiding vision loss, nor are we condemning it. We’re exploring the reasons behind it.  

We couldn’t find any statistics on this online, so we created our own unofficial survey online.  We didn’t have a budget for this survey, so we had to rely on what SurveyMonkey would allow us to do for free, which was 10 questions to 100 people.

We posted the survey on a few blind and visually impaired facebook groups and had 100 responders within a couple days, which provided us with a small snapshot to begin our exploration.  .

One of the survey questions we asked was – Have you ever tried to hide your vision loss from others? 58% of individuals surveyed marked “Yes”.

After tallying the results, we proceeded to do some follow-up work, and asked people within different online visually impaired communities their reasons for hiding in the past or present.  Some of their answers included:

  • Talking about it hurt too much
  • I was afraid I would lose my job
  • I don’t want co-workers to think I can’t do my job
  • I didn’t want to seem different or strange
  • I don’t want to have to explain anything
  • I’m afraid people will treat me differently
  • I thought my boss would doubt my abilities
  • I was embarrassed

Over the years, a lot of our family and friends asked us why we weren’t more open about our vision loss growing up and into young adulthood.  “What is there to be embarrassed about?” they would question, “It’s not like you did anything to cause this.” For a long time, it was difficult to express a reason in words.  We now know that a lot of the reasons we hid stemmed from shame and fear. We have wondered where this shame and fear originated, and while we can figure out pieces of if within our stories, it wasn’t until very recently that we considered some of it might be coming inadvertently from culture.

We both recently read For the Benefit of Those Who See: Dispatches from the World of the Blind, a book intended for the sighted, which we will review on our blog in November.  We bring it up now because it fits into the discussion of culture’s influence on the blind.  The author, Rosemary Mahoney, explores the prejudices that exist in other parts of the world, primarily Tibet and India.

Though her observations took place in developing nations, where blindness is often equated with evil sorcery, Joy reached out to the author to ask her opinion on the prevalence of cultural prejudices in the U.S.  Joy ‘s original message to Ms. Mahoney was out of personal curiosity, but when she read her response, Joy realized that it fit with our exploration of why we hide.

“Blind people are not outwardly shunned in the US, but there is a whole conscious and even subconscious prejudice here against blindness that comes out of fear.  Fear comes out of a lack of information. Blindness is the most feared physical affliction in the US after only AIDS and cancer, yet in the US we have one of the lowest rates of blindness in the world.  That statistic reveals a very entrenched mindset about blindness.  We aren’t really exposed to blindness on a daily basis the way people often are in developing countries, so we don’t know much about how blind people live.  The not knowing is what prompts our fear.”

34 thoughts on “Guest Post: Why We Hide

  1. Reblogged this on Art by Rob Goldstein and commented:
    This is a blog post about vision loss and the problems of people who are affected by it. For me it is an important reminder of the stigma that all people with disabilities must live with.

    1. Thank you for reblogging this post Robert to bring awareness to the issue of stigma faced by people with disabilities.

  2. It seems so unjust that people should feel shame and stigma over losing their sight. For those of us with different disabilities it’s important to remember that there is a stigma that affects people with disabilities in general.

    It might be interesting to have a ‘Disabilities Awareness Month” to bring more awareness to the fact that people with disabilities are people like everyone else…

    1. Robert, thank you so much for your comment. Tonight my son took me to a couple of stores and each one we went to people were staring because I use a white cane. Some days are better than others but tonight my son got so irritated he told a couple of people “it’s just a cane” and they’d be embarrassed and look away. I tried to explain to him it’s not the so much the cane but the fact that I’m using it and I look like I an see. What some people fail to realize is that given the choice most of us would not want to use a white cane but it’s simply a tool to help us to remain independent. October is Disability Employment Awareness Month which highlights abilities and talents of people with disabilities. You are so right that people are people.

      1. Thank you for your response and for the work you do. I sometimes complain about having an ‘invisible” disability but the visible ones come with a price, too.

      2. You’re right, if it weren’t for the fact that I use a white cane to navigate no one would know that I have a vision impairment, that is, until I need to see something. My son had (I say he stall has) ADHD and it was another hidden disability unless he decided to have an episode.

      3. Right…when it’s invisible other people assume it’s just ‘bad’ behavior…all too often that includes people who should know better, like mental health professionals.

      4. Exactly. I love this quote by a friend of mine, Libby Thaw, “Everybody, including people with disabilities, makes assumptions. Problems arise when we are not open to learning our assumption was wrong.”

  3. That was a very interesting post. Naive as I am, I’d never realized that vision loss was such a common thing to try to hide. I feel I now have a better understanding why that should be the case.

    1. For me part of it was having to face my own feelings towards blindness so there was the shame and subsequent guilt and even more worrisome was thoughts of being victimized. It was and sometimes continues to be scary.

  4. Two things…the first is that I absolutely love this blog. I actually learn quite a bit and feel more aware because of it. The second is that I really had no idea that there was such a stigma centered on blindness. Thanks again for a great post.

    1. Hi Kathy, thank you so much for your comment. It’s so good to hear that the blog is raising awareness on the issues of blindness and the people living with blindness. It was only going through the loss of my sight that I learned that the word blind doesn’t necessarily mean total darkness and because of this I wanted to share the stories of others. <3

  5. This was a very informative post and brought up so many things we would have not knows! ! You are so strong! xxx Thanks

    1. Thank you Lynz!! <3

      1. So nice to understand more!

      2. I wish I would have know more before I began losing my sight but this is one of the reasons why I started to blog to enlighten others. Thx for your support.

      3. It is so important and brave of you to talk! xxx

      4. I’ve been around and number of people with disabilities most of my life and I just feel it’s important to build awareness around the issues and people living with disabilities.

      5. It really is important! Thank you!

  6. A moving post… I think that woefully we live in a very judgemental society… there many stereotypes concerning certain so called patterns, which are most times generally accepted… This applies to physical shapes and behaviours, I am guessing… there are personal factors that might be related with the fact of hiding the vision loss from others… I think that no one is perfect at the end, so it would be relieving to accept ourselves and embrace our virtues and flaws as part of our uniqueness… I know that it would be hard… even tough… but we would feel better and happy if we do so… so it’s worth it.
    All my best wishes. Aquileana 😀

    1. Thank you so much for your comment Aquileana. Yes, unfortunately we do live in a very judgmental society and I have to wonder this it has to do with it being part of the human condition. None of us like being wrongly judged but yet we do it to others all the time. The process of losing my vision has taught me to at least to be more aware of when I’m judging, reminding myself to keep and open mind in an effort to change this thinking. You’re right about the personal factors related to hiding vision loss. My main reason was the fear of being taken advantage of. however for the great majority of us who do end up self disclosing, since our mission then becomes to build awareness we then understand the importance of putting ourselves out there in the hopes that the message is being received. I love this bit “embrace our virtues and flaws as part of our uniqueness” because as you say we would be so much better off if we could only do this.

  7. I feel that not only our culture but evolution itself, supports the “survival of the fittest” credo, which leads many people to hide their ailments. I grew up with asthma and at that time, it wasn’t accepted like it is now with kids sitting in a classroom using their nebulizers. I can remember holding my breath so no one would hear me breathe and I just used my inhaler publicly, for the first time, a few years ago, and I’m 64 now.

    Our youth based culture, etc. is focused on being ripped, young, thin, perfect skin, faces and bodies and the health to go with it.

    So I feel that all of it is part of the shame and fear people have about their limitations.

    Even mental issues are still not talked about as much as they could be.

    1. Yeah I think there is too much focus on being perceived as “perfect” even though we all know there is no such thing for real but out perception is severely skewed. It’s a sad state of affairs and I’ve said it before but the truth is where disabilities are concerned anyone at any time can become a member of this group which happens to be the largest minority group in the world.

  8. Thanks for giving me a glimpse into your world. I have hearing impairment and I see similarities there.

    1. Hi Robyn, thank you for your comment. I have a couple of friends (they are twins as well) who have Usher Syndrome and since both hearing and sight are involved they have a double whammy. I lost my vision when I was 49 but because it appears I can see people don’t understand why I use a white cane.

      1. Gosh, that must be difficult for them. At first when I lost my hearing – only in one ear – I was distressed by the loss of directional ability. My students used to find it hilarious if a question was posed, I would direct the answer to the opposite side of the room. After an unsuccessful operation I had the additional problem of transference – extreme sensitivity to noise because of nerve damage.
        Reading about you and what you have to deal with makes me realise I have much to be thankful for.

      2. Like you said in your article it’s about perspective and making choices. When I first went through this process I had so many pity parties it was insane and then I had to realize either I just continue on the downward spiral or get up off my duff and work within my given parameters. Once I did that it became much easier. I still have bad days just like everyone else but it’s not nearly as bad as it was in the beginning. I would think hearing loss is very difficult because of balance issues and such. I know whenever my ears get clogged from being sick I can’t stand it.

      3. You know Steph, listening to other people’s challenges gives me a greater appreciation of my own, which are mostly small in contrast. But the real lesson for me is that we all have them – just in different forms. That’s sort of comforting to know that if others can prevail then so too can I.
        Yep, the balance is a nuisance but not unmanageable.

  9. I can’t hide it nowadays, but when I was a kid, I used any excuse for my reading or getting around issues except the true one. I wasn’t really paying attention when I fell down the steps. I just didn’t know those words when I had to read aloud in class. I wasn’t blind, I just had bad eyes. When I finally learned to use the computer, the first song I wrote about it had the theme that online I could be anyone, that people didn’t have to know about my shame. I never really tried to hide it as an adult; heck, I have a guide dog for Heaven’s sake. But, I still believe that people treat me differently before they find out, such as on the phone. Americans may not shun blind people as they do in other countries, but they do have a more subtle and just as effective way of keeping us on the outside looking in. Nice article and thanks for the work you’re doing on this topic.

    1. Hi Donna, I’d be interested to see data on people who lose their vision later on in life. My gut tells me that the percentage of people in this bracket would be pretty high. Thank you for your comment I’ll pass it on to Jenelle and Joy. Are you in this winter storm’s path? It just began snowing here about an hour ago and the roads got ridiculously bad in a very short amount of time and we’re on the outer edges of the path.

      1. Steph, IMO, the American Foundation for the Blind compiles the best stats on this. I think there are only about 85,000 blind kids registered in schools. The biggest group is over 65. We have only had a skim of snow, and I doubt we will get more than an inch. Strange being too far north for a major snow storm. Stay safe and warm.

      2. wow only 85,000 blind kids? the over 65 group was expected as far as numbers but I wonder how many in this group pretend they can see.

  10. Thank you Kerry. I wish I could say I never hid it but initially I did because I was fearful of being victimized and then other reasons came to the surface.

  11. I have never been able to hide it, but I used to be able to push through it better. Now that I’ve lost more site I don’t want to hide it per se. I just don’t want to stand out. I will admit I do like it when I hear someone didn’t realize I was blind, but that happens less and less. I know how much fear there is about blindness. It makes me sad.
    That book sounds very interesting. Looking forward to your collaboration.

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