Editor’s note: Jenelle Landgraf and her sister, Joy, are identical twins who have grown up with retinitis pigmentosa (RP). They created the Doublevision blog to show that there is no right way to go blind. Below is a post that has been reprinted by permission dated October 2015, from their blog.
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 the books “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:
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.”
So, after reading this blog post what do you think? Do you think that people with vision loss try to hide their vision impairment? If so, why? Do you think it is entrenched in American culture to be afraid of the blind? Do you think that contributes to why people hide their vision loss? Share your comments and thoughts with us and let’s chat about why we hide.