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.
It 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.