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recent Salt Lake City gathering.

A fundraising drive related to the blind community went viral. The organization finances great medical research, yet the campaign premise doesn’t sit well with me. I’m split, so I’m reflecting on #HowEyeSeeIt from the Foundation Fighting Blindness (FFB). Yep, I’m diving into the deep end.

FFB’s digital awareness campaign encourages people with vision loss to ask others to wear a blindfold and do a task together. They record it for social media and label it #HowEyeSeeIt. Amateur, professional, and nationally broadcasted stories were created. Some people pushed back and expressed opposition and rejection of the blindfold usage. The National Federation of the Blind released a letter written by President Riccobono admonishing it. People in the blind community reported censored comments or blocks on FFB’s social media accounts. FFB, a private organization, has the right to delete/block communications on their accounts, but has publicly stated it is not blocking or banning users. It’s sticky when blind people voice dissent about a campaign intended to support the blind community and they feel silenced. It’s emotional when you go deep.

When I gained low vision, I needed help to learn adaptive techniques and to accept my disability. I won’t deny it was hard. I won’t deny there were days I felt overwhelmed. Most importantly, I won’t deny my period of depression and the emotional journey I traveled to accept my vision loss. I meet the challenges. I’m married. I’m employed. I love to cook, read, and go places. I live with satisfaction; my blindness doesn’t define me, it’s a part of me.

When I see others donning a blindfold to “experience blindness,” I cringe a bit. The first moments of any experience don’t encapsulate the complexities and challenges over the rest of it. Are participants remembering we don’t wake up everyday new to vision loss? Do participants understand the time spent learning skills and the successes gained and the love shared living with vision loss? Or do they stay rooted in the first moments of disorienting darkness, the rush of adrenaline?

Research in 2015 by Arielle Silverman at the University of Colorado proved simulating blindness negatively effects perceptions of people with visual impairments. We know Americans fear blindness more than death. We don’t need to validate blind fear with activities that reinforce it.

People ask me all the time, “what do you see?” It’s hard to answer without including props like, “reduced degrees of vision is kinda like looking through a paper towel roll.” The time to explain how we adapt and cope and continue to live well is not always available. At times, I’m not having a great day and I don’t want to be an Ambassador of Outreach for Blind People Everywhere.

Meanwhile, I harbor guilt for wanting a cure for retinal diseases like Retinitis Pigmentosa. I’m not dying from my vision loss. Millions of people support curing all kinds of medical conditions. Is it only worthy to support research for terminal illnesses? My eyeball sitch is a bit out of the diagnosis box, but with autonomous cars on the horizon, I believe brilliant scientists are developing splendid bionic retinas and fine optic nerves. I value a cure while I accept my vision loss. I’m a disability advocate. I can support both a cure for blindness as well as inclusive societies. I can hope for the future and live in the present.

It’s important to examine strong emotions, to find the root of the pain and anger. Do we get annoyed with #HowEyeSeeIt not only because of the fear factor, but the money aspect, too? What opens donor wallets? Is it out of a common sense of shared duty to help others? Is it for the creative efforts spent for a good cause? Or is it due to…groan…pity? Cut to nightmare-triggering ghosts of telethons past.

While I don’t support blindfolds as a substitute for living with blindness, I refuse to criticize an organization working hard within the blind community without offering a suggestion. We can’t stand in our corners and expect to move forward.

Perhaps FFB will reboot this fund drive. I propose this: next time, #HowEyeSeeIt v 2.0 won’t feature blindfolds. It’s gonna use a symbol of American independence, the automobile. I would love for the FFB to do a campaign challenging those without vision loss to go keyless for a week. Go on a vehicular diet. It’s not like your car will break down in the middle of the night in the middle of nowhere without cell service. Darkness! Fear! Uncertainty! No, no. It will stay parked at home for a week. Take the car keys away from an American adult and watch things get real.

Photo shows a Key chain with keytags next to a monoccular on a wooden surfaceIt feels different to walk places. Or ride a bike places. Or to ask for a lift places. It feels different to plan ahead rather than rely on hop-in-the-car instant gratification action. Catch the bus.  Ride the metro. Use the sidewalk. Count how many people do, too. Notice the places devoted to cars, and consider the money supporting that civic infrastructure.

Notice how it feels to move under your own power. How it feels to spend time with loved ones who support you. It’s fun to do activities together. It feels different because it is different. Not driving shows one way we adapt and cope and continue our lives with vision loss. If you lose vision, fear not, the quality of your life can increase. #HowEyeSeeIt

Do you support charities funding medical research? Have you worn a blindfold to simulate blindness? If you’re sighted, do you fear blindness? What would improve the HowEyeSeeIt campaign? Would you give up driving for a week? Tell me about it.

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15 thoughts on “Guest Post: Performing in Blindface

  1. Great article Joy. I remember when I was training to be a chaplain and they talked about the importance of never thinking in terms of pity but rather true empathy. They said pity is poison. I appreciate the thought here that to walk in someone else’s shoes needs to be done in a way that honors what they’re actually walking through. No car keys would be difficult indeed. Thanks for the reminder this morning!

    • Thanks Becky! Yes, Susan did a great job with this post. That is so interesting about your chaplain training. I think it’s awesome that they take pity that serious and call it poison. As someone who is visiting sick and dying people, the importance of empathy is exponential. And knowing your or all these years, I can just imagine the incredible empathic presence you bring to the people you visit!

  2. We have daughters with low vision that’s degenerative, they’re 11 yrs old. We do support funding medical research and hope for treatments. It’s not that we feel our children will have a less fulfilling life or something if / when they lose the majority of their vision we know, and we raise them knowing, they can do anything they set their minds to they just might do it differently than most. That being said life has enough challenges, if we minimize challenges of any kind we’ll do it.

    When I’m alone I often close my eyes to do random tasks around the house and despite the fact that I know where I am it’s intimidating. It gives me insight on how to relate to my daughters’ future and the skills they should sharpen. It doesn’t make me take pity on my girls and those with vision loss, it gives me more respect for them. When I see a person walking down the sidewalk or crossing the street with a white cane in my mind I commend their courage.

    Going blind, or my children going blind, is not my biggest fear. They have a genetic condition, BBS, that causes their vision loss and it’s usually accompanied by kidney problems, cognitive delay and many other symptoms,we consider ourselves blessed these things are not an issue. Our girls are happy, healthy, carefree girls rocking their accommodations for their vision. They never complain, they never ask why me, they’re grateful for their family, friends and just love life. We’re blessed.

    Now for the tough question, would I give up driving for a week? Being a mom with 3 kids and two jobs the thought of that gives me anxiety. I can’t imagine how I would juggle all that with no car, another reason I give those with visual challenges much credit!

    I can’t say what I would do if anything to change HowEyeSeeIt, sadly I do not know enough about their campaign. I have to say I do not feel their challenge is offensive and believing in funding for medical research I think the exposure would be great. I can’t see turning down a way to fund medical research.

    As usual thank you for the enlightening post! <3

    • I am blind. I do not want to be sighted, although I do understand how somebody who was born that way would want to go back. For example, if I became deaf, I would want to become hearing again. Doing things like cleaning and walking around my college campus are not that hard for me, but interacting with sighted people has become harder and harder for me over the years. It becomes really hard for me to learn anything in class when my professor and classmates think I have so much courage for just using a computer. It is difficult to be proud of my work, only to have people come along and say it is good, but think of how much better it would be if I were sighted. Sighted people always think they are better at everything and that their lives are more worth it, and it is starting to annoy me more and more. This one time, this glass jar broke, and I was the only one who could clean it up because my roommates could not see the tiny pieces of glass. I want to live in a world where people actually want me to be there instead of praying for the day when I won’t exist. Granted, they would say they would be fine if I still existed as a sighted person, but that is like saying that you would be fine if a black person still existed as a white person or if a female still existed, but just in male form. It makes me sad that if I were at and Nfb meeting and I did not set up the chairs in a straight line, they would tell me to go back and fix it, but if I were at a meeting with sighted people and I did that, they would just tell me that I did a good job and fix it once I was gone. I remember when I was in PE, The coaches would expect everyone else to do the exercises, and I wanted to do a good job like everyone else, but when they came to me, they would tell me I was close enough even if I wasn’t doing it correctly. At an NFB banquet, I would be expected to wear formal clothing, but if I went to a banquet with sighted people, they would be happy if I was just wearing something that matched. Sighted people say they are nice for treating me this way because it boosts my self-esteem, but I don’t understand how that works. I am at the point where I can’t even invite a sighted person to my apartment because a lot of them think I live with my parents or at a school for the blind. I guess they think blind people go to school there and then live there for the rest of their lives or something. They would not want to come over to visit. They would want to come over to evaluate every aspect of my life, which is why I can’t invite them. I suppose I will just have to except that unless I can make it hundreds of years into the future, I will always be isolated from them regardless of whether we are physically in the same room. They will always think of interacting with me in any way to be an act of charity. Even an elementary school, the kids had to get stars and stickers for interacting with me. That is how undesirable I was to them. Laws will always be the only thing that give me access, but sighted people automatically get access to things because everyone thinks they are worthwhile human beings. I on the other hand, and just a drain on society’s resources who should be applauded for waking up each morning, And who should be physically altered as soon as science allows. They are all fine and should not be physically modified, but according to them, I am just a mistake like a shriveled berry or a squished protein bar.

      • Sabra,
        Thanks for sharing your personal experiences. It’s frustrating when it feels like people don’t take actions seriously. Self-advocacy helps to make intentions and expectations clear. Organizations like the NFB understand the great potential people living with vision loss embody. It recognizes the importance of continuing to educate people who do not grasp the capabilities of people living with visual impairments. You’re setting a great example by choosing to do things you are capable of and which you enjoy. And you have a flair for words, too: squished protein bar! Consider using your experiences to fuel a creative project.

        Susan

    • Thank you so much for your thoughtful response to this post, Vickie. Your daughters sound so grounded, and your family does a great job of focusing on all the wonderful aspects of life. I love that you try to put yourself in their shoes by closing your eyes during household tasks.

      The controversy over this campaign surprised me initially, and I can certainly see it from both perspectives. I really like the way Susan approaches the subject in this post, and the discussions her insights have prompted.

      Thanks again for sharing your perspective, Vickie.

      Jenelle

    • Thanks for continuing to read our blog, Vickie, and thank you for sharing your thoughts! Your daughters are luck to have a mom like you, with such a balanced perspective. I think supporting medical research is important, and I think you’re right about life being challenging enough without one more thing!

  3. Insightful, indeed! Thank you for you eloquent words. It has given me something to think about, and I feel a bit of “my” onion skin has been peeled away, and new thoughts and opinions growing in its place. Thank you again, for sharing your thoughts and feelings.

  4. What an absolutely amazing article and gives so much perspective! To answer your questions…I do support charities funding medical research. I have not worn a blindfold, but have used the visual simulators. I do not fear blindness. I would and will give up driving for a week! I think it would be an extremely valuable experience, although very challenging even though I live in Chicago with good public transportation. Thank you for your post.

    • Thank you for sharing your thoughts on this post, Hillary. Yes,living in a city with reliable public transportation makes a HUGE difference when considering hanging up the car keys for a week.

      Jenelle

  5. Great article! I am surprised and totally accept your opinion that the HowIseeIt campaign is more likely to invoke pity, not empathy, for low vision/ blind people. Why do I read this blog page? Certainly not to pity you! I am trying to enhance my education to understand life in your shoes. I am a nurse and a guide dog puppy raiser, the more insight I have, the better I can do my jobs. My perception is if you feel pity from certain individuals, most likely they are people who haven’t bothered to educate themselves. And yes, their pity is driven from fear. Some people are disabled with stupidity and don’t recognize they have a problem, not you! Thanks and keep writing!!

    • Thanks so much for reading our blog, and for commenting on Susan’s guest post about the HowISeeIt Campaign. It’s always a pleasure to hear from puppy raisers who are doing the selfless work to benefit others. I love that you take the time to learn about blindness.

      Jenelle

    • Yes, thanks Kathy! I know that most people, especially puppy raisers like you who want to educate themselves, do not have pity on people who are blind! I actually do a number of “simulation” exercises in the classes I teach and don’t feel like they invoke pity or fear, but I think it’s all how it’s framed. I think the studies that Susan cites in this post say a lot, though, and definitely help me to see the fine line that exists with blindness simulations, especially ones involving blindfolds!

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