As a blind person and the President of the National Federation of the Blind, a recent campaign by another organization got me thinking about the lives of blind people today and what they might be in the future. Should we invest in improving the lives of blind people living today or focus only on planning for those who might live in the future? I believe that we can, and should, do both. The Foundation Fighting Blindness (FFB), on the other hand, seems exclusively focused on future treatments or cures for conditions that cause blindness. Unfortunately, the FFB’s recent fundraising campaign will jeopardize the dreams and aspirations of blind people living today in pursuit of uncertain promises for the future.
FFB recently launched a social media-based fundraising campaign branded with the hash tag #HowEyeSeeIt. The FFB says that it wants people to understand the challenges blind people must overcome, and so it asks that people post videos in which they put on a blindfold and perform any one of several suggested tasks, like making breakfast. The campaign has garnered some positive publicity and celebrity participation. Sadly, however, it will do much more harm than good in terms of helping the sighted to understand what blindness is like.
“Adjusting to blindness does take training, time, and effort, and the process is not always a smooth one.”
I do not mean to denigrate the FFB’s efforts to fund medical research, nor do I mean to minimize the initial impact that blindness has on an individual. If blindness comes, and if the condition causing it cannot be corrected, then an extensive process of adjusting to it begins. Blind people and those who are losing vision must learn non-visual techniques in order to accomplish the tasks for which they previously used their sight. In order to travel safely, blind people use white canes or guide dogs. We learn to read Braille, a system for reading and writing based on raised dots. We learn techniques for cooking, cleaning our homes, washing and sorting our laundry, handling our finances, and more. There are computer applications that can read the content of a computer screen to us using synthesized speech, and devices we can connect to our computers or phones that display the content on them in Braille.
Adjusting to blindness does take training, time, and effort, and the process is not always a smooth one, which is one reason why the National Federation of the Blind exists. We advocate for blind people of all ages to receive the tools and training that they need to live the lives they want, including through three model training centers we operate. We also provide support by connecting them with other blind people so that we can all continue to learn from one another. Sighted people who wear a blindfold for a few minutes, however, haven’t had this training, and usually they don’t have an experienced blind person around to explain how a task might be accomplished non-visually. So more often than not, the experience is disorienting and frightening, the task is not accomplished successfully, and the participant comes away from it believing that blind people can’t possibly perform the task that he or she has just attempted.
There is research showing that methods of vicariously experiencing disability don’t work, and in fact have the opposite effect from what they intend. In one study, a blind doctoral candidate compared the attitudes toward blindness of people who had attempted to perform a task under blindfolds and those who hadn’t. The views of the blindfolded subjects as to whether blind people had capacity and could actively participate in society were more negative than the views of those who had not attempted the task under a blindfold.
“The views of the blindfolded subjects as to whether blind people had capacity and could actively participate in society were negative.”
Negative perceptions of the capabilities of blind people have serious consequences. For example, the unemployment rate among blind people is between sixty and seventy percent, depending on the estimate you consult. This isn’t because blind people can’t work or don’t wish to do so. It is because people do not know, and cannot imagine, how we can perform most jobs, even though many of us are already doing them. That’s why the National Federation of the Blind also works to educate the general public about the true capabilities of blind people.
One of the things that has distressed me and other members of the National Federation of the Blind most about the #HowEyeSeeIt campaign is that, on the list of “challenges” people could perform, the Foundation Fighting Blindness initially included watching one’s child for one minute under blindfold. Blind parents have had children removed from their custody, not because there was actual evidence of abuse or neglect, but because a judge or social worker believed that a blind person could not possibly care for a child. In just one such horrifying incident, a couple wasn’t allowed to take their newborn baby home from the hospital, and didn’t regain custody of the infant girl for two months. The National Federation of the Blind has had to go to court many times to defend the rights of blind parents. My wife Melissa and I, and thousands of other blind parents, live with the fear that this nightmare could happen to us. In this context, the FFB’s suggestion is not only wrongheaded but dangerous.
“This strategy ultimately jeopardizes the dreams and aspirations of blind people by reinforcing inaccurate stereotypes.”
There is nothing wrong with raising funds for medical research to treat or prevent blindness. It is deeply unfortunate, however, that the Foundation Fighting Blindness is using a fundraising strategy that relies on spreading the fear, misconceptions, and low expectations that already make up most of society’s current perception of blindness. This strategy ultimately jeopardizes the dreams and aspirations of blind people by reinforcing inaccurate stereotypes.
We are therefore demanding that the FFB cease or redirect its fundraising campaign. Until it does, I am asking all readers of this post not to take the #HowEyeSeeIt blindfold challenge, and not to donate to the Foundation Fighting Blindness. I am also asking blind people and their friends and families to start telling the true stories of how blind people are successfully living their lives and doing all of the things fully participating members of our communities are expected to do. You can read many of these stories in our Kernel Book series. Make videos or post stories in social media using the #HowEyeSeeIt tag, but telling the true story that is represented in the lives of hundreds of thousands of blind people. The truth about the capacity of blind people living their lives today should not be hidden to fund the promise of research in the future.