Dear Friends and Family Members:

Perhaps you’ve noticed that I’ve been posting a lot on social media in the past week about the #HowEyeSeeIt campaign, a social media challenge that encourages sighted people to put on blindfolds, engage in a list of everyday activities, and then share what they’ve learned about how difficult or impossible that task would be for a blind person and how sad that is. You’ve likely seen me post that, while I certainly support research into the causes and treatment of retinal diseases, the National Federation of the Blind, the oldest and largest organization of blind people in the United States, opposes this campaign.

You’ve probably also seen me post about the psychological and sociological research that’s been done, showing that disability simulations lead to greater stigma and misconceptions about the capabilities of people with disabilities. One particular study conducted by blind social psychologist Arielle Silverman demonstrated that sighted people who participated in a blindness simulation activity were less likely than those who did not to believe that blind people could work as accountants, work as chefs, run their own businesses, live independently, or walk alone in a downtown area.

The misconceptions and fear generated in these “awareness activities” have a real negative impact on my life.

You’ve probably also seen me post about a video produced by the campaign that purports that it’s impossible for blind parents to monitor their children in a park. The video shows children playing in a park and the screen slowly goes black, simulating progressive retinal disease. As the screen grows cloudy, text tells you to “Follow your kid.” (Obviously, “your kid” is not wearing bells on his shoes and you’re not talking to your kid as they play. Finally, as the screen ominously goes black, text informs you that “Diseases rob ten million Americans of this.”

I wish I could post that this video is laughably inaccurate. Blind parents take their children to the park every day. My husband and I are both blind and we take our three-year-old son to the park on an almost daily basis. We personally know dozens of blind parents who do the same.

In actuality, there is nothing laughable about this video. Although the Americans with Disabilities Act (ADA) outlaws discrimination against people with disabilities and some states have additional laws protecting parents with disabilities, blind parents regularly face custody challenges from social service agencies and medical professionals based solely on a parent’s blindness. Videos like this destroy families.

My husband and I live in a nice home and have fulfilling careers. When I was pregnant with our son whom we wanted very much, I had several doctors ask if I had considered abortion. Less than twenty-four hours after our son was born, I woke up to a team of thirteen doctors surrounding my hospital bed, interrogating me about how my husband and I planned to care for our son. We are hoping to have a second child either biologically or through adoption. Do you want the doctor who delivers our baby or the social worker who decides if we get to adopt a child to watch this video?

Finally, here is how the #HowEyeSeeIt campaign feels to blind people: It was frustrating and frightening enough when the campaign was first launched and we watched people putting on blindfolds for three minutes to try to tie their shoes, make dinner, put on their make-up and lament about how hard it was to be us. Then, the National Federation of the Blind and thousands of blind people spoke up politely to say, "You’re hurting us. Please stop,” and presented them with academic research proving that disability simulations lead to increased stigma and misconceptions about what it’s like to live with a disability. Campaign organizers essentially said, “We hear that we’re hurting you. And we don’t care. We’re going to continue hurting you no matter what you say. And we’re going to enlist other people to hurt you as well. And they’re going to think we’re doing the Lord’s work and you’re crazy.” For a community that often has our voices marginalized and disregarded, this was devastating. As my friend Nicole Schultz-Kass said, "I honestly feel disregarded. This entire thing has left me feeling like my reality doesn't matter, like it doesn't matter that this is demeaning and disrespectful and discriminatory."

It takes courage to speak out. I have major respect for everyone who has posted, Tweeted, blogged, made videos, and signal boosted over the past week. We’re gonna stop this thing! As Martin Luther King said, “The arc of the moral universe is long, but it bends towards justice.”

We are also grateful to the many friends, family members, and allies who have joined with us and magnified our voices. And for all of our friends and family members who have stood by and not taken action, it’s not too late to support your blind friends and family members. Share a video, a blog, or a press release. Just Like (or Love) a friend’s post to show support. This campaign demeans the blind people in your lives. Step up and show them you're not okay standing by while they are hurt. Stand with the National Federation of the Blind against this harmful campaign that will lead to greater misconceptions about blindness that have the power to do real harm to the people you love.

FOUR WAYS YOU CAN GET INVOLVED:

1. Tweet your support for your blind friends and family members. Be sure to use the hashtag #HowEyeSeeIt (with the word “eye” instead of the letter “I”) and also tag the National Federation of the Blind, @nfb_voice.

2. Post a video explaining why you don’t support the #HowEyeSeeIt campaign and how it impacts your loved ones. Some of the most moving and persuasive videos yet have been by allies.

3. Share your blind friends and family members’ statuses, videos, and blog posts about their opposition to this campaign.

4. Tell the Foundation Fighting Blindness on their Facebook page that you do not support this campaign and why. You can also send them an email at [email protected].

Inaccurate perceptions of blindness negatively impact my life, my husband’s life, and the lives of thousands of people just like us. Won’t you help us in ensuring that not one more job, home, or child is lost?

Thank you!

Stacy Cervenka