Recently the Foundation Fighting Blindness launched its #HowEyeSeeIt campaign to raise awareness about blindness caused by degenerative retinal diseases and to push for a cure. As part of the campaign, people are participating in a blindfold challenge, where they post two minute videos of themselves trying to do daily tasks while blindfolded. One of the suggested tasks is having a friend give you an unknown amount of cash and then you try to pay for a meal with that cash. Another is having a friend ask you to take care of their child for two minutes while blindfolded. These and other activities in people’s videos are offensive.
I’ve talked a bit on Facebook about my problems with the campaign, but I felt like I needed more space to explain myself more fully and thoughtfully. So here is how I see it.
First, let me be clear. I have no problem with medical research, and no problem with a search for a cure. Personally, I wouldn’t want a cure, but I don’t have a degenerative retinal disease. I’m not going to pretend I know what it’s like to slowly lose my vision. I have some vision, but I have been blind since birth. Three years ago, when the retina in my right eye detached and my eye had to be removed, I lost some vision, and yes, if someone offered me that vision back, I would take it. But I wouldn’t take more than what I had before, because I don’t know what perfect vision is like, so I don’t miss it, and I don’t want it. Also there’s all sorts of brain science that shows that getting your vision back doesn’t mean you’ll be able to see, but I won’t go into that because I only vaguely understand how it works. Suffice it to say that if I had a choice between perfect vision and a million dollars, I’d take the million dollars every time. But that’s me, and I’m not representative of every blind person, and I’m certainly not representative of someone who lost their sight over time due to a degenerative retinal disease. So if they can conduct medical research and find a cure, that’s great.
But I find the FFO’s campaign to be deeply problematic. Two-minute videos of people struggling to perform daily tasks while blindfolded does not promote awareness of blindness. Instead it promotes fear and ignorance. If I had to perform some daily task with earplugs in, you bet I would have a hard time doing it, and you bet I would be afraid. But if I was losing my hearing, of course it would be scary, but I would learn, just as so many people who are losing their sight learn to live just as independently as they did before they lost their vision. Two minutes blind can in no way represent years of practice and training. It just can’t. It reduces the blind person to someone who must be pitied, cured, and worst of all, feared. It is a backwards, old-fashioned way of seeing the blind (and I use the word “seeing” deliberately). It is the idea that when you see someone who is blind, or someone with any disability, you are afraid, because you are afraid that could happen to you. It is the same sort of ignorance and fear that I encountered, not everywhere, but so often, when I lived in Italy. These attitudes about blindness can be changed, but what FFO is saying is that it is impossible to be blind and live independently—going blind is the worst thing that could happen to you—and the only solution is a cure.
Which brings me to my second issue with the #HowEyeSeeIt campaign. As I said, I have no problem with research for a cure. But there are other options, options that are hampered by the notion that being blind is to be feared. Braille, assistive technology, white canes or guide dogs, independent living skills training, positive public awareness campaigns, these are the ways we combat blindness.
Not being able to see is not the end of the world. Trust me, I know. There are strategies for handling money without sight—everything from folding bills to smart phone apps. And a blind parent is just as capable of taking care of a child as a sighted parent. In the midst of efforts to prevent social services from taking children away from blind parents, many times before the parents can even bring their child home from the hospital, this is particularly egregious. It is a result of ignorance, and it is this ignorance and this fear of blindness that FFO is promoting.
By living independently, we open the public’s eyes to what we can do and how we can do it. By being open to talking to people and answering their questions, we educate the public, and we break down barriers. If we let the public see us as incapable, as #HowEyeSeeIt does, we only reinforce stereotypes.
I have said it before, but I think it bears repeating here: I will answer any question you have. I won’t get offended. I am happy to do it, because every question I answer is one more step towards a society that accepts diversity and does not view blindness as a “disability.”
This is how I see it. I am a daughter, a sister, a friend, a student. I write. I play the clarinet. I am a huge nerd. This is who I am. I am blind, yes. But blindness does not define me. Blindness does not stop me. And this is the message that needs to be shared.