Performing in Blindface

 Photo shows a pink fuzzy I'm ask on a white background 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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30 Comments Add yours

  1. Let me start with a simple “Amen.” I have two blogs currently being written, one of which is along these same lines. You beat me to publication.
    The same situation occurs when we have people perform tasks using a wheelchair. They are given a hospital type wheelchair, the ones used for wheeling someone around in the hospital, and are asked to open a door. Perhaps there is an obstacle course.
    They have inferior equipment and no training. They also cannot experience the permanence of the disability. There is no removing the blindfold, no standing up and forgetting the chair, today and not tomorrow. It is something we simply cannot demonstrate.

    1. Thank you and great example with the wheelchair tasks. There’s no scarcity of space on the Internet for more opinions, write that post!

  2. Joy says:

    This is such an eloquent, insightful post ….so many beautiful lines I can hardly choose my favorites! . I can support both a cure for blindness as well as inclusive societies. I can hope for the future and live in the present. I think the FFB should do the “keyless” campaign…. I’ll jump on board!

    1. Thanks for your consistent and awesome support, Joy!

  3. Susan, this is a brilliant post! I love how you offered an alternative solution which could be more beneficial to everyone. Great job!

      1. Thank you for putting into words what I was only able to think on.

  4. Reblogged this on Bold Blind Beauty and commented:
    I couldn’t have said this any better and I love that Susan has offered an alternative solution.

  5. Susan I also meant to tell you I really like your blog’s new format👍🏽

    1. Thanks! I think it freshened it up nicely.

  6. floweringink says:

    Thank you for this post Susan. It is a much more thoughtful and, I think, reasonable response to the #HowEyeSeeIt campaign than others I have read. I love that you suggest an alternative approach and that you express your continued support of the FFB. As a woman who also has RP, I appreciate that you do not claim to speak for me or the blind community but share your feelings in a very personal and eloquent way.

    1. Thanks for your comment! It’s such a tough topic with conflicting feelings. My voice is but one. By the way, been thinking about you since I read the Yappy Hour post. I forgot my sunnies and was not on my A game catching the bus the other day. Glad you made the best of it. And I’m requesting more Yappy hour photos on Instagram please!

  7. Casee says:

    You eloquently stated what I feel. Imitating blindness with a blindfold just won’t do it. I like the notion of not driving for a week to show what life can be like when you must depend on others to get where you are going. To step up for the low vision folks, I like the eyeglasses that can be purchased which simulate various degrees of vision. Perhaps people can spend a morning trying to do tasks with tunnel vision glasses and the afternoon with vision of only eight or nine degrees. I don’t want to make it a disability contest but low vision folks outnumber blind people. I like the idea of raising money to cure blindness but shutting out the voices of those blind people that disagree with your methods is wrong. I even think it is condescending. It’s as if you want those little people who disagree to be quiet because they don’t understand that they are being ‘helped.’

    1. Yes, when someone with a different opinion is silenced it does not go over well. Any campaign–charity, marketing, political–sets out with intentions and a product and the audience may not react as expected.

  8. Kathy peterson says:

    Susan, I havent followed the campaign closely. I only saw one example on Facebook. But I really appreciate how respectfully you explained and disagreed with it! Plus you offered an alternative plan.Thank you for your humanity in this dialogue that has gotten out of control partly because of social media. Well done Susan!

    1. Thanks, Kathy. Appreciate your thoughtful comment!

  9. herheadache says:

    Reblogged this on Her Headache and commented:
    Conflicted. This disability advocate and blogger writes a fair and true post on why this whole thing feels like a conflict. She is right. Finding hope for the future while still living well in the present.

    1. It’s a difficult topic and thank you Kerry for your honesty.

  10. So many appeals for money tap into non disabled people’s fear and pity but, as you say, disability is a complex matter both physically and psychologically. And it takes so much energy to redress the negative messages these appeals offer. I love the alternative approaches to showing how to live with blindness and low vision that you offer. For instance, if you have been a driver, it does take a while to get used to alternatives ways of getting around, taking longer to get places, carrying less shopping and running errands but with ingenuity and common sense it can be done. I have mixed feelings about driverless cars too. Will they add to more congestion and pollution? Certainly, in cities wouldn’t more money spent on public transport be worth considering? Anyway, Susan, this is a terrific blog and I hope it will reach a wide audience.

    1. Oh yes, the considerable energy to redress. Thanks for your insightful comments, Bridge. And I agree on considering the mass transit options to fatten up over more and more cars, even if they are autonomous.

      1. I would be interested to hear what you and your readers think of this. I will admit I’m not happy. https://www.macularsociety.org/Mac

      2. That’s a lot of rhyming and horrors and plight featured in that animation. A missed opportunity to perhaps interview people who benefited from services from the society to showcase how they are living full lives with “Mac”. A mini tour of the lab where research is done would have been nice as well. Put faces and stories behind the services please not fear.

  11. blindbeader says:

    Reblogged this on Life Unscripted and commented:
    “I can hope for the future and live in the present.”
    If you are unfamiliar with the #HowEyeSeeIt campaign by Foundation Fighting Blindness, this blog post is a good way to get yourself familiar both with the campaign itself and the emotional backlash that followed. I have very mixed feelings regarding the campaign, but do believe that it’s bad PR for an organization to block, ignore, or otherwise censor respectfully provided negative or neutral feedback.
    That being said, this blog post not only laments the blindfold simulation itself, but offers an alternative solution.
    Thanks for providing some much-needed clarity to what has proven to be an emotional topic for many over the past several weeks.

    1. Thank you! This is becoming The Little Post That Could. I appreciate your thoughts on it.

    2. Thank you for your interesting and constructive reply. On a personal level I am offended by the portrayal of someone with MD but, as you point out, what a missed opportunity. Particularly as it was provided by the makers of Wallace and Grommit.

      1. I was wondering if the animation was done by a known group, it seemed more than a little effort.

  12. Susan, excellent article! I’m a 66-year-old writer who has been legally blind from RP since early childhood (doc said from birth). I first heard about you from Steph’s blog. I remember when they were the RP Foundation. I was 20 before there was any organized research on retinal diseases. When I wrote to the Library of Congress at age 16 for a bibliography on the subject, I got an apology and three mimeographed copies of the only articles they had in their vast collection – no books. So, I know how devastating it can feel when no one is even studying the condition you have. I participated in their early studies, sending many tubes of blood their way. That said, when they changed their name to FFB, I felt a bit like a target. This campaign reinforced that.

    I like your suggestion about giving up driving for a week – a month would be even better, since most people could probably plan for a week without running into the problems that come up even in situations where a person has a good support system. What happens the day everyone has a conflict, there’s a major transit system problem or some unexpected family or personal emergency?

    I would like to show sighted people the kind of thinking/planning/coping skills we need to develop and convince them that those alone make us a population with uncommon and valuable skills that far outweigh the hassles of initial discomfort and accessibility issues.

    1. Thank you, Donna for the insightful comments. I appreciate that you included your personal experiences, too. The discussion improves when we put our discontent into context.

      A month of no driving would certainly bring up many more interesting problems for participants to work around. It would be quite the challenge.

  13. Beautiful. I think the blindfold thing would only work if people spent more than just a few minutes – or even hours – with the blindfold. They would need to go several months wearing it all the time for the experience to even remotely resemble the experience of someone who is actually blind. And I am all for your suggestion of going keyless. I have said since I was little – having been blind since birth – that I can find workarounds for all sorts of challenges, but the inability to drive is one I just can’t fix. Especially because I’ve almost always lived in rural areas with zero public transportation.

    If FFB raised enough money that one day led to a cure for blindness, I’m pretty confident I would not take it. However, that does not mean that I have the right to say that other people who are blind should not take the opportunity if it came about. This does not mean that blindness is “bad” and should be “fixed” or “cured.” For me, it simply means that it is a personal decision and should not be judged by others.

    1. Thanks for adding your thoughtful perspective to the discussion, Marissa. You words ring clear and true.

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