Dear Foundation Fighting Blindness,
Hello! My name is Jessica Naert. I have been a supporter of yours for several years, especially with the VisionWalk. I have co-captained several teams over the years, including “The Way Eye See The World” and “The Eye Catchers,” along with my best friend, Misty Allen. Both Misty and I have Retinitis Pigmentosa (RP). Misty is now totally blind. I have a little vision remaining. Retinitis Pigmentosa is one of the leading causes of inherited retinal degeneration vision loss and one that your organization readily researches to find a cure and fundraises to continue this important research. I support this type of research and applaud you for the work you have done. However, after your #HowEyeSeeIt campaign, I am not so sure that I can continue to support YOUR work. There are many ways to touch people’s heartstrings and encourage them to donate. Instilling fear of blindness into your donors or potential donors should not be one of them.
Your campaign is very misguided, encouraging supporters to fundraise by showing how difficult certain tasks are under blindfold. It is conveying that blindness is something to be feared, that blind people should have low expectations for themselves, and that society should also hold low expectations for blind people. Many are aware of the Muscular Dystrophy telethon, which aired every Labor Day. It was discontinued several years ago and one of the reasons it was is because people who actually HAD Muscular Dystrophy, along with their families and friends, were tired of the telethon portraying them as helpless victims, implying that without a cure individuals with MD have nothing to contribute. That is EXACTLY what you all are doing, FFB. This campaign has many similarities to the ice bucket challenge to raise funds for ALS. However, that challenge did not have their supporters pretend to have ALS for the day and the overall premise did not instill fear about the disease. You all could have done many different other creative things to follow the influencer to social followers model. Why this? If it was because you didn’t realize the dangerous impacts it would have, many of us can understand that and forgive. But instead of accepting this might be a problem, you continue to silence us.
I’m very disheartened by your censorship and lack of willingness to discuss this concern. Many blind individuals and sighted individuals alike have posted on your Facebook page expressing their disappointment and disapproval of this campaign. Some of these posts were very neutral, including Nicole Schultz-Kass‘. She is no longer able to post to the page. I too posted a very neutral post explaining my longtime support of your organization and while I wasn’t blocked from posting, my post was deleted and other comments were deleted. Many many other blind people have posted that they were blocked as well. You then proceeded to post and say that you weren’t doing this when we could easily show that you did. By doing all of this, you are fighting the blind PEOPLE, not the diseases. It would have been more helpful to the situation and cause if you all could have responding acknowledging our viewpoints and changing this campaign some so that you worked WITH the blind people, not against them.
I am not a member of the National Federation of the Blind (NFB) but understand that they have reached out to you about this. They are a leading organization in the United States for people and of people with vision loss. While you don’t necessarily have to agree with their viewpoints all the time, when an important issue like this arises, why not welcome the opportunity to continue to build the bridge between another leading organization for blindness in the United States (like yourself) and have an open dialogue?
As previously mentioned, Retinitis Pigmentosa is the cause of my blindness, but the fear our society has about blindness and the misconceptions surrounding blindness is the cause of most of the issues I have today. The perception that blind people need to be taken care of, that they would be a financial, physical, and/or emotional burden to hire and work with, that they are incapable of safely and effectively parenting, that they cannot be independent and contributing members to their families, communities, and a society as a whole… THIS is what hurts us. Several of the videos on your campaign webpage show professionals (film makers, chefs, football players, DJs, etc) who put on the #HowEyeSeeIt blindfold and try and do it without sight, many times with the guidance of somebody who is actually blind. This tactic is not appropriate because the blind chef, Christine Ha, has had YEARS of experience and skills training to get to that point, as did Jake Olson with football and Joe Mons as a filmmaker. The campaign has also encouraged more simple tasks be completed under blindfold, such as counting cash. Of course somebody who has not had to every do this before isn’t going to know how to do it but somebody who has been blind and had to learn how to adapt might pull out their iPhone and pull up the LookTel app which will tell them what each bill is, or pull out their money reader from the US Treasury, or feel the particular way a bill is folded to know which denomination it is. One of the most spread videos is about how blind people have trouble taking care of their children. This is so deeply painful for me. I am not a parent but plan to be in a few years. I have many many friends who are blind parents and have done a fantastic job at raising such sweet, responsible, loving, intelligent, fabulous children. One of my friends once was told that she shouldn’t fight in court for child custody because the judge will just look at her blindness and assume that she’s inept. THAT is absolutely disgusting and EXACTLY what your campaign is encouraging and encouraging our society to believe.
Through this campaign, you are suggesting that the only “hope” those who have been blinded by retinal degenerative diseases have is to wait for a cure. This is NOT the case. Depending on your geographic area, there are so many wonderful resources and support services out there to help these individuals be independent, obtain and maintain competitive integrated employment, have families, etc. I was diagnosed with RP at 14. I am now 27. I am a full-time state employee (Transition Vocational Rehabilitation Counselor), helping high school students with disabilities plan for their transition out of high school and into living productive lives. I am a devoted daughter to my beautiful mother, and a sister to my amazing sister in medical school. I am a leader in many organizations. I am a disability advocate. I am a best friend to many beautiful people, a girlfriend to a fabulous guy. I am a volunteer. I am ALSO blind. Blindness is a huge part of me, partially because I choose to let it be, but it does NOT define me.
There has been a lot of research done on these types of simulations. A blindfold simulation by a blind person will never be accurate. Arielle Silverman conducted blindness simulations as part of her research her in Ph.D. program at the University of Colorado. Several individuals were blindfolded, while several were not. The individuals that were blindfolded left the activity left with the perception that blind individuals are less able to hold down basic professional jobs and were less able to live independently. This simulation did absolutely no good for those with visual impairments. As Arielle has said, “Blind folding yourself is not much like living with blindness. When people develop permanent blindness, they get used to it. Research shows that most people who develop disabilities eventually adjust. The fear, frustration and distress go away over time. It is just part of the human condition to adapt to any new circumstance. Further, when people become blind, they learn techniques and adopt tools, such as the white cane, that give them independence.” This type of simulation does not help them realize this. I will say that there are a FEW occasions, I believe, that disability simulations may be okay but there is a lot of thought and planning that goes into them to make them appropriate and not harmful.
In addition to your #HowEyeSeeIt hashtag, you can also add #ableist, #damaging, #dangerous, #misguidedfear, #oppression, #counterproductive, #mockery, and several more. I would love to talk to you about how we can remove those extra hashtags in reality and add more positive ones. While this campaign will end (hopefully sooner rather than later) and the sensation will die down, people with vision loss and their family and friends will have to live with the harmful effects of this campaign for a very long time. Do you employ anybody on your PR/Marketing team that is actually blind and actively part of the blind community? If not, I encourage you to do so. Maybe then you can find ways to fundraise for medical advances while not compromising the dignity and well-being of the population you apparently work for.
We, thousands of blind people from across the United States, look forward to hearing from you soon to have an open discussion about this issue. Until then, we will use #HowEyeSeeIt to speak AGAINST this campaign and post positive, empowering, and ACCURATE everyday depictions of blindness, showing our independence, success (at home, at work, as active citizens in our communities), and hope that we can help shine a light for you and your supporters on what blindness really looks like and how teaming up with us, not against us, will further your campaign and fundraising efforts drastically.
(A follow-up post will be live later this weekend which will further discuss my opinions and reactions to this and explain more. Stay tuned!)