Warning, folks – this post is going to be long. However, I really hope you will read to the end to understand this very important issue that means so much to me and thousands of blind people across the United States. There are many links throughout this post. For those who are sighted, you can click anything that is underlined and a different color and it will show you what I’m referring to in that sentence/paragraph.
Many of you have read my Open Letter to Foundation Fighting Blindness sharing my strong opinions and concerns regarding the #HowEyeSeeIt campaign, urging them to modify their campaign to be less damaging to blind people and include blind people in creating their campaigns. This would be much more inclusive and supportive of the blind community but would also strengthen their fundraising efforts as they would have an ally in the blind community, instead of enemies. If you haven’t read the letter, I encourage you to do so before you continue reading as this might make more sense
I feel very strongly about this issue. In my letter to FFB, I wanted to be direct and share my concerns with some emotion but not too much. (We all know that would go on forever if I did so.) However, I wanted to share more of my concerns and emotions with you here.
The #HowEyeSeeIt campaign encourages supporters to make a donation to FFB and create a video of themselves blindfolded doing simple daily activities. The video is hash tagged with #HowEyeSeeIt and is shared across Facebook to encourage others to donate and make videos to continue spreading the word. It is a influencer to social followers model campaign. The #HowEyeSeeIt website has campaign materials, including a printable blindfold/mask with the words #HowEyeSeeIt on them, branding, and social media graphics. They also have “example” videos and “featured videos.” They make it pretty easy for someone to participate and spread the word, which is great. However, the message that they are conveying through encouraging these videos and simulations is deeply damaging.
To be very clear, I fully support Foundation Fighting Blindness’ research efforts. I fully support them launching a digital initiative to increase public awareness about retinal degenerative diseases and the important work of the Foundation Fighting Blindness. I DO NOT support marginalizing the population they work (blind people) by employing a campaign that encourages its supporters and viewers to pity blind people and fear blindness.
Many people have become quite upset about this campaign and have written FFB privately and/or posted on their Facebook page. These are blind people and sighted alike. Many of their posts have been deleted, blocked from commenting, and/or blocked from viewing their page altogether. This shows that they are not open for discussion and are just wanting to silence us. I get that they don’t want all the negative publicity but they could encourage those with concerns about the campaign to contact them via another method to at least hear the voices of the group they work with. But they didn’t.
National Federation of the Blind (NFB) has also spoken very publicly about their concerns regarding this campaign. FFB hasn’t listened or even been receptive to dialogue. Therefore, they are encouraging their Federationists to post a positive video of themselves as blind people doing important or everyday tasks and showing how they are very capable. While I am not a Federationist/a member of NFB, I do intend to do this as yet another way of spreading awareness about the harmful effects of this campaign and how we, as blind people, live amazing fulfilling lives.
Research shows that disability simulations aren’t very effective and actually can do more damage than good. Several years ago, I would have been all over this kind of simulation. However, since going through grad school and working in the disability field and being so immersed in the disability community both professionally and personally, I am not a fan of them anymore. I will say that there are can some simulations that are pretty good if done professionally. For example, the Division for Blind Services came and did a sensitivity training with my office at work since we are going to start working with more blind people as consumers, but also because they work with a blind person (that’s me!). Many of my co-workers found this pretty useful in understanding basic things, such as why moving things in the refrigerator, especially my food, causes me so many problems or why taking a pair of scissors from my office and putting them back in a different place can be so frustrating. However, I wouldn’t encourage them to try and navigate out of their house to a vehicle, put on make-up, play a sport, try and count the appropriate money and pay at a store, etc., because that will just lead to frustration, and then pity, and then fear.
One of the videos specifically instills fear about parenting while blind. This is gut-wrenching to me. One of my very good friends is blind, got divorced, and was going to go through a child custody legal proceeding but was given advice not to, because the Judge in our area for this type of legal proceeding would likely consider her incapable of safely taking care of her children due to her blindness and her blindness alone. So she didn’t do it and has worked it out other ways. But how sad is that?! I have so many different friends now that are blind parents and do a fantastic job. Their kids are absolutely amazing and in many cases I think are better citizens because of different situations they have experienced and faced due to having a blind parent. I am going to (hopefully) be a parent in a few years and sure, there are a few things that I have wondered about how I am going to do with my vision loss.. but it’s do-able and we don’t need all these people, especially law enforcement, legal personnel, and social services agencies thinking that we are inept solely based on our blindness.
I was already a bit upset and thinking about speaking out about this campaign a few days ago and then when I saw the Today Show segment, I literally became sick to my stomach. Rebecca Alexander has Usher Syndrome, which is a combination of hearing loss and vision loss. The vision loss is caused by Retinitis Pigmentosa, the same condition I had. Her brother is an NBC Correspondent and went on the TV show with her to talk about the #HowEyeSeeIt campaign. Together Rebecca and Peter went to a nice restaurant and attempted to eat a meal. Peter experienced difficulty with drinking out of the glass which had a piece of fruit on top, cutting his meal, figuring out where his food was, etc.. all things that do happen to the visually impaired. However, I will say that we also have methods to help us with this, such as when we place food on our plate we will remember where we put it or when we first get the food if it was served by somebody else, we will ask for a description of where it is on the plate. (I was pretty impressed with the waitress who said that she was bringing something in on his right – that announcement was pretty awesome and most wait staff don’t do that sort of thing, unfortunately). Rebecca is an amazing, beautiful woman who has accomplished a lot, from climbing some of the highest mountains, to some pretty impressive swim times, etc. So for her to say that she has become comfortable with other people cutting her food just completely rubbed me the wrong way. If you can climb a mountain, you can cut your own food. She also said something about wanting to experience everything while she can. I have mixed feelings on this. The way she said it sounded like she had a death sentence.. blindness isn’t deadly. Now if she had said she wants to VISUALLY experience things while she can, I would totally understand that. I have a few “vision bucket list” items of my own. It’s just really sad that two individuals who are very much in the spotlight already went on the Today Show, which has a wide following, promoting these ideas and this campaign. Ugh.
These simulations may somewhat portray what it is like for those who lose their blindness overnight (which can happen) or have sudden vision loss, but for those of us who have been living with vision loss for awhile, it is not accurate. We still can get pretty frustrated, don’t get me wrong, but we develop skills and techniques over time with practice to be able to do the same things we did prior to our vision loss or those with congenital blindness, those that their sighted peers do. For example, putting on make-up can be quite the challenge. Joy Ross has some pretty excellent videos about how she has learned to put on make-up as well as other daily tasks. People who play sports and are visually impaired have had a lot of training and practice to be able to perform at the level they do.
Assistive technology of course helps greatly.. we can go to a restaurant independently (of course after we have figured out transportation), and read the menu with the help of an app on our phone. We can determine what cash we have in our wallet with an app on our phone, the US Treasury money reader, or by folding our cash certain ways for each denomination (very l0w tech yet easy way). We read our mail with the use of a CCTV (closed caption television to enlarge font and change colors/contrast if needed) or with a PEARL camera and OpenBook software which converts printed documents to text and then reads it aloud. We can cook with different adaptive techniques and equipment.
I live alone. I do everything completely independently. The only thing I really need assistance from others for is transportation, but if a friend isn’t around, I can just call an Uber or Lyft. I work a full-time professional job and absolutely love it. I hang out with friends all the time and have a very active social life. I volunteer in the community. I lead several different groups and organizations. I am a huge family person. While blindness does suck sometimes and get frustrating, I don’t need anybody’s pity because of it. I don’t need others fearing blindness because that just only leads to more unemployment of people with visual impairments (it’s already incredibly, disgustingly high), leads more people to think that blind individuals can’t parent, and becomes the reason that blind people have trouble… not the blindness itself. I also don’t need people thinking I’m inspirational because of what I do as a blind person. I am just taking the deck of hands I was dealt and playing the game of life. When people have called me inspirational in the past, I have gently told them this and added that I’m okay with if they think my perspective and positivity is inspirational, but don’t want them thinking me just living is inspirational.
Don’t encourage this ableist campaign. Please don’t donate to the #HowEyeSeeIt initiative. If you make a video, pair up with a blind person and create an uplifting, positive video about how they are living their daily lives. Don’t post a video that shows how frustrating it is to be blind.