BAM! Blindness Awareness Month is coming to a close, and we have a hot topic to discuss.
Joy 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.”
I am leaglly blind, however my center vision is still very good, so must people that I have told, don’t belive me or seem to think I am making it up (for what reason I do not know). I find it easer to just not tell anyone and let them think I am clumsy or a crazy person as I run into to them, when people come up beside me and I don’t know they are there so it scares me, they look at me like what is your problem, just to hard for people to understand what we are going though each day.
Yes, Brenda, it is hard for people to understand….it’s just a lack of knowledge that there’s a whole spectrum of blindness out there….some with more sight than others. I used to try to explain to parents at my daughters’ school why I seemed to ignore them when they waved and sometimes looked lost, and they also acted like they didn’t understand and like maybe they thought I was using it as an excuse for being ditzy or something. But since I got my guide dog, they finally realize that my vision is legally bad enough to need assistance and are now totally understanding. There are still those occasional people who act weird, but it just comes from a lack of knowledge.
It’s interesting to read the reasons people give for trying to hide vision loss. Our culture influences our behavior whether we realize or not. Thanks for exploring this. Ms. Mahoney’s book is on my TBR list, hopefully I will get to it in November.
Yes, it’s a great read….very interesting! Knowing how thoughtful you are and your taste in books/podcasts, I think you’ll find it very thought-provoking.
Thankyou 🙂
You have encouraged me to be fitted with a cane i made the call today and its the first step …
I have been hiding my vision loss for as long as i can remember.
I am ashamed and fearful and i just can’t seem to help it.
I was diagnosed at 8.
However my parents chose to hide it from me and i found out by accident when in a routine visit my Dr looked in my eyes.
I was 12 at that time and when i told my best friend she said don’t tell anyone you will never have a boyfriend!
My vision loss has progressed alot more rapidly in the last year and the reality of my condition is very scary.
A good friend of mine has told me several times that she thinks i am amazing that she has never in all the years heard me complain or talk about my eyesight.
In the last couple months its all i can think about .
I have a wonderful husband who is my guide.
Thank you Joy for your comment to me on the RP facebook page,your wonderful inspiring video , this blog and the comfort in knowing i am not alone in this journey xo
Thank you for your honesty, Catherine. And congratulations on getting a cane. (I’m not sure if “congratulations” is the right word, but I can relate to what a huge step this is)
It’s interesting that you were diagnosed fairly young, similar to Joy and me. And very interesting that your parents chose to keep it from you and that you found out by mistake. Joy and I have talked about how being diagnosed with a disability at such a young age has affected our feelings of shame, and perhaps even contributed to those feelings. Processing this information as a child / pre-teen can be confusing and scary. And then having friends/family weigh in like your friend did (don’t tell anyone b/c you won’t ever have a boyfriend if you tell) only adds to that confusion and shame. It sounds like you’re really spending time working through it now, and that your journey will be taking some new turns in the future. Your good friend is correct in saying that you’re amazing. None of this stuff is easy, but you’re working through it anyways.
Jenelle
Many thanks for this interesting article. It is something I explored in a blog I wrote about when the right time is to get a cane. I think that much of out fear is around how we will be perceived. I use a cane in busy public places, as it gives me more freedom and speed. The problem is that some people are thrown when I smile at them or they see me read something, as they don’t understand the concept of partially sighted. I think that some of our shame around blindness could possibly come from own previous perceptions. It would be a hard one to be honest about, but I’m trying to explore my own earlier feelings around this.
Thanks Michele. I think you hit the nail on the head regarding how our own previous perceptions about how we will be perceived affect us. And it can be a very tough subject to be honest with ourselves about. Can you provide me with a link to your blog that you wrote about the right time to get a cane?
Thanks!
Jenelle
Wow what a great article. I am visually impaired/legally blind. I have been for 22 years. I was 25 when I was diagnosed with stargarts macular degeneration. I can relate to being embarrassed and hiding my vision loss. I do not know many people like myself , so I felt I needed to hide it from co workers , boss, friends. I thought I was the only one who felt this way. It is hard to explain my vision loss to others so that is one reason I hid it. I did not want people to think I was incapable of doing a good job.
I did not want to accept my vision loss and I think that had a lot to do with keeping it a secret.
I still struggle with it. Thank you for your article.
Thanks for sharing your experience, Suzanne. I can relate to your feeling of not wanting people to think you’re incapable of doing a good job. And although the struggle to overcome those thoughts does not feel as strong as it once did for me, it is still there. I’m curious, do your co-workers and boss know about your vision impairment now?
Jenelle
Hi Jenelle
I am not working at this time. I started losing my vision at age 25, was just about to get married and move to another state. I was going to call off my wedding cause I did not want to be a burden to my soon to be husband. Well we have been married for 19 years.???? I am glad I did not call it off. I moved to a new state was not driving and was trying to find a job. Before I got married my current job had no idea of my vision issues, mostly cause I had just been diagnosed. I was leaving that job to get married and move to another state. I honestly had no idea how to deal with what was happening to me let alone let a potential employer know. I figured they would not hire me. I did to some extent let on. I had so vision issues but was not totally open about how much I really struggled. Trying to use a computer and read print was so difficult, but stubborn me just kept on pretending I could do this. I was embarrassed using a magnify glass( what would people think) I thought. I even felt that way in public at stores. I was so self conscious of my visual issue that it made my life maybe harder than it had to be. I did not even want friends that I made know about this . Because I did not want people to know I would pretend to be able to see pictures etc. that they showed me. I would laugh at a joke that they would show me cause they laughed, not cause I could read it and found it funny. I did not want people to know just how bad my eyes were. Honestly hiding it made it more stressful than just being open about it. I think I hid it also cause I was still able to drive during the day, so I think that kept me in some denial as to my vision loss. However 3 years ago I had to stop driving and my life came to a abrupt halt. How was I going to get around get my kids were they needed to go etc. what are people going to think . Why is she not driving did she get a DWI. I worried what my kids friends parents would think why is she not driving. So it was 3 years ago that I really had to come to terms with my vision loss and not just be honest with others but be honest with myself.
Now I struggle with having to ask for help with rides for me and for my kids. I feel like a pain in the butt. I hate asking. I also struggle with my kids meeting new friends and trying to set up play dates etc. well I do not drive , why? Well because . I just hate having to explain why.
Sorry for rambling but I just wanted to share why I hid my vision loss and where I am at today.
Thank you for responding to my post????
Suzanne, So much of what you wrote resonates with me……I also have made life SO MUCH more stressful on myself by hidiing my vision loss. But when you’re in the midst of it, you don’t see it like that, right? It’s not until the burden has been lifted that you feel just how heavy it was. How old are your kids? Mine are 2 and 6, and I can also relate to not wanting to constantly ask for rides, and I have a feeling that issue will only get more challenging as my children get older and involved in more activities. It sounds like, in some ways, not driving has been a “benefit” to you in the last 3 years in that it’s caused you to be more open about your vision loss. Okay, maybe “benefit” isn’t the best word choice, but I’m glad that you don’t have to deal with the stress of keeping it completely hidden anymore. Try to give yourself grace in dealing with the obstacles (both literal and metaphorical) that vision loss brings…..that’s what I keep reminding myself to do.
Thanks again for sharing parts of your story with us.
Jenelle
Hi Jenelle
My kiddos are 6 and 11 years old. I have 2 girls.
Thank you for your words . I agree I need to give myself grace. Yes not driving has made me have to open up about my vision loss. I try and let people know that if you see me and I do not engage or acknowledge you please say something to me, cause a lot of times I can not recognize people faces. People will say I was waving at you and you did not wave. Lol
I think a lot of hiding has to do with what “our” perception of others will be. And for what ever reason we think people will react in a negative way. When in reality there are a lot of people who want to help.
My husband works and his hours can be crazy, so I sometimes get mad at him because I feel like I can not depend on him to be there for me. I then am forced to reach out to others. Honestly I can say if it was not for my kids I would probably become a hermit. Lol
Thanks for your comforting words. I am so grateful I found this site. I finally feel like I am not alone, but can talk with others who are going through the same issues I am.
Suzanne
Thanks Suzanne! I definitely have my “hermit” days….but you’re right – kids force us to keep putting ourselves out there, even when it’s uncomfortable. And yes, most people respond with more helpfulness and kindness than we could have predicted. It’s just so much easier to be the helper than the person receiving the help (for me, anyways). I like to joke that someday the people who are helping me will see how hard it is to receive help as they grow older and need assistance. Perhaps we will be pros and growing old because of all our experiences needing help with rides now…..
Jenelle
I am learning so much from these blogs and comments!! Keep on informing us, For the benefit of those who see!
Yes, and we have you to thank for the book recommendation! Your book club may be curious to see the rabbit trail this topic has taken us down!