(This is Part Two in a series. If you haven’t read Part One already, you should)
In the last post, I described how spending my time hoping for a cure crowded out and actually worked against me pursuing my other hopes and ambitions.
It doesn’t just work that way for people, though.
The same thing happens on a societal level, when the quest to cure blindness takes place at the expense of those who are already blind.
This might seem counterintuitive, so I’ll give an illustration. A few years ago, a non-profit organization launched a fundraising campaign called #HowEyeSeeIt, which has since become infamous in the blindness community.
The goal of this campaign was to create a viral video sensation—kind of like the Ice Bucket Challenge, which raised so much money for ALS research. Instead of just doing a silly gag, participants were supposed to film themselves trying to do a basic task while blindfolded. Suggestions included making and eating lunch, doing household chores, or caring for your children.
But why would people watch the videos? Because it would create a spectacle, an amusing showcase of inept bumbling.
Blindfold yourself and make a mess of things—just like real blind people!
And why would people donate? Because participating would convince them of just how impossible it is to do anything without using their sight.
Blindfold yourself, and learn how unbearable it is to be blind!
Fortunately, the campaign never went viral, which is why you’ve probably never heard of it. Unfortunately, the other part does seem to be true. Blindfold simulations do make people more afraid of blindness and less confident in blind people.
A study by Dr. Arielle Silverman (herself blind) showed that participants in blindfold simulations actually leave with a lower opinion of blind people. From a blog post summarizing the research (the entire post is worth reading if you have time):
In one part of the study, after simulating blindness by having their eyes covered, participants believed people who are blind are less capable of work and independent living than did participants who simulated other impairments like amputation, or had no impairment.
In another part of the study, participants who were blindfolded said they would be less capable if they personally became blind and slower to adjust to their new world compared with study participants who weren’t blindfolded.
But isn’t it good that they’re learning what it’s like to be blind? Won’t it make them more considerate and sensitive to the needs of blind people? It would, if simulations really showed what it’s like to be blind. But they don’t. They only show what it is like to be blind with no education, skills, or experience.
It’s true that losing your sight can be scary and disorienting. But with education, skills training, and lifestyle adaptations, blind people can—and often do—live confident and fulfilled lives. The power of skills and experience cannot be communicated in a fifteen minute exercise, and participants leave with half the story.
The #HowEyeSeeIt campaign is just one example, of course, and most fundraising efforts aren’t quite so demeaning to the people they aim to help. But this one example reveals a fundamental question that looms over any effort to cure blindness: is it possible to respect the dignity and capability of people who are blind and still maintain the same urgency to find a cure?
For many blind people, thees two ideas exist in tension. Efforts to prevent or cure blindness are essentially good, but at the same time no cure is necessary to make life happy or worthwhile.
So go on, fundraisers, search for a cure. Just don’t frame it as the only hope for blind people. Don’t exploit sighted people’s fear of losing their sight. Don’t perpetuate false and frightening images of blindness. Don’t reinforce the low opinions and low expectations that have plagued the blind since time immemorial, because these burdens weigh much more heavily on the blind than blindness itself.
Low opinions and low expectations deny education when the students are apt and eager to learn.
They deny jobs when the skills are sufficient.
They deny a voice to those who are capable of understanding and advocating for themselves.
They deny the blind full inclusion and integration into society.
Prejudice and patronization are maladies that plague society, as real and as harsh as blindness itself. Any quest that seeks to cure blindness without also curing these is incomplete at best, destructive at worst. Let’s not pit these problems against each other. Let’s work on curing them both.
7 thoughts on “Dark Side of the Cure, Part Two: Mixed Messages”
Thanks for these last two posts. I struggle with this tension when trying to advocate for my son. Would we like for his sight to be restored, sure. Do we think he will live a fulfilling life as a blind man, yes, without a doubt. As you mentioned along with visionloss came education and adaptation. He gets around confidently with a cane, reads Braille and stays active. We are super proud parents. Thank you for exploring these topics and sharing your thoughts.
Thanks for the comment, Kim. I’ve had a lot of conflicting thoughts and feelings writing this series, and it’s interesting to explore them. And I’m very glad to hear you are getting your son skills training and teaching him independence—that is a great gift!
Incredibly well stated. I wholeheartedly agree.
Thanks for this thought provoking blog. Our culture has encouraged the value of fixing every problem. The result is that often the problem is not understood and the fix becomes a problem. Yes, we want a cure for blindness but so appreciate your focus on the person who is blind. Understanding and accepting an individual with a problem rather than jumping in and trying to fix it should be our focus. Great blog!
I had a random disturbing/entertaining thought while reading. The equivalent viral video for my disability (chronic neuropathic pain in my lumbar spine, sciatica, and muscle spasms in my left lower back, buttock, hip and thigh): pain-free person trying to do a simple task while someone followed them around sticking pins in them.
Dark. I think I need a nap.
Dark, but funny!