I was going to work on my newest venture of writing fiction (thanks to my wonderful friend and mentor, Bryan) and send out some poetry submissions this morning, but then I entered the WP world and read a few different posts, from others in the Blind/VI community, about the #Birdbox challenge, and I felt compelled to respond with a post of my own.
I must begin by saying that I haven’t seen The Birdbox or any of the videos of the #Birdbox challenge, so you may read this post and say to yourself,” jesus Susan, do some fucking research before you actually write a post”….but what can I say, I am a risk taker and honestly, willing to rattle some feathers on this specific topic. That said…..
My understanding is that The Birdbox is about a woman and two children who are forced to remain blindfolded to stave off the attacks of monsters and ultimately stay alive. The challenge, as I have read, is something along the lines of putting on a blindfold and attempting to do anything from basic tasks to potentially dangerous undertakings. This all seems pretty foolish to me, but doesn’t strike me as having anything to do with being blind, or trying to understand what it’s like to be blind. It sounds like a gimmick that was derived from a movie made purely to entertain (if that’s your thing). Please don’t hesitate to correct me on any of this, if I have missed the mark.
I feel it is important for me to say that I am not a spokesperson for the blind community; I am just a blind woman with some, most likely, unpopular opinions. I find that my views often seem to be in opposition to many of those that I read from other blind and visually impaired people. I understand the importance of education and debunking stereotypes, especially regarding the idea that blind people are helpless, but you won’t hear me joining in the outcry against blindness as something to fear. Blindness scares the crap out of me. This is just my truth, but it has been so since the day I was told I was going blind. Before my RP diagnosis, I was actually less afraid because blindness wasn’t something that had even come close to touching my life. When it did, you better believe I was scared. I still am. But I am not helpless and I am not weak.
In regard to the blindfold challenges (this bird box thing is not the first) and the question of these challenges perpetuating the stereotypes of the helplessness and fear of blind people, I think hearing about the experiences of the sighted people who participate in the challenges is just as important as hearing the opinions of those of us who are blind/visually impaired. Talking specifically about the Birdbox challenge, I wonder if the sighted participants actually think being blindfolded and being blind are the same thing? Maybe we aren’t giving them enough credit.
As far as exercises of blindfolding sighted people to give them a small idea of how challenging it can feel to be blind, I won’t be one of those rallying against it. For those of you who have read my blog for a while, you may remember a few posts I wrote about being blindfolded for some of my O&M lessons, as an aid to learn how to better use Zelda (my white cane). If O&M instructors are using blindfolding as a tool for teaching blind and visually impaired people, the use of blindfolds to educate sighted people doesn’t seem like something unequivocally damaging to me.
Will being blindfolded give a sighted person the exact experience of being blind? Of course not. Is it a terrible thing to give a sighted person an idea of how scary it can be to be blind or visually impaired? I don’t think so.
My first experience of one of these blindfold challenges was through a video posted by an English poet named Dave Steele, who has RP. His wife was blindfolded and walked a block with his guide dog, Christopher. When she removed the blindfold, she was crying and said that for the first time, she felt like she had at least a small idea of how hard it must be for her husband, how challenging it must be to adapt to his ever-changing vision, to blindness, and how hard it must be to learn how to depend on aids like a cane or a guide dog. My take was that the feelings she felt from the blindfold exercise were the kind she couldn’t get from reading about his experiences, and this is a man who writes almost exclusively about RP.
Perhaps my view of these challenges isn’t negative because it was built from a positive foundation, from the reaction of a sighted person, rather than the opinion of a blind/VI person. Perhaps I am totally full of shit and about to piss off the entire blind community. I hope not, but I feel it is important to offer varying opinions. I welcome comments of any kind on this post. I just want to keep learning and understanding. I Just want the conversation to stay vital and alive.
January 10, 2019 at 9:20 am
I so appreciate you ❤️.
January 10, 2019 at 9:40 am
Thank you, my sister!!! Love you!
January 10, 2019 at 9:41 am
Love you right back 😊❤️
January 10, 2019 at 9:30 am
Blindness scares the crap out of me too. As it gets worse and worse I get more and more scared, especially being in a wheekchair also. I “see’ mymlufe dusapoearing more and more each day, until I feel more and more stripoed to nothingness. I have ni feeling in my hands and feet either, so that is another priblem. I DO agree that putting a blindfold on is no way of telling what it truly is like to be blind, because in the end it is not a lernanent state. The person knows that soon, the blibdfold will be off,and they will be back to normal again. Having said all of that, I for ine try to be pisjtuve and to fund ways through it whilst still desperately grieving themloss of my sight. Recently I have felt a lot of anger,vwhuch is not like me. But it is more anger at others than anything else, and the cancer or rather the chemo that made me blind.mm this is a great pist Sysan.
January 10, 2019 at 9:47 am
Loraine, my heart and love and respect go out to you! Thank you for sharing your story and your views on this. I know it is hard, but I think it is so important that we keep talking about all of this stuff, and I admire that you do so with unyielding bravery and a positive attitude. As for the anger, it is understandable and ok. I know you will not let it overtake you; it couldn’t. But, I do think it is so important to feel and to express it, talk about it, write about it. You are truly amazing!!!!
January 10, 2019 at 9:36 am
As I sighted person who was blindfolded to be shown what it is like to use a white cane. The overwhelming feeling I had was I wouldn’t do this without this cane or some kind of guide. The cane gave me a little more confidence in moving around and it serves both as an aid and as I sign to sighted people that I should be given right of way.
Losing sight is am sure very scary, I admire and respect those who do not allow such a thing to stop them functioning and in some cases excelling in their lives.
But I understand people can be stupid, insensitive, it’s only a game when you can take the blindfold off.
January 10, 2019 at 9:42 am
Thank you for giving your insight about your experience, honey. I think it would be really valuable if you wrote a post for my blog about your reality as the spouse of a blind/vi woman. What do you think?
January 10, 2019 at 12:00 pm
You are right I should and I will. xx
January 10, 2019 at 9:43 am
I’ve seen the movie. It’s about an invisible entity that can make people have hallucinations if they are exposed to it, and those hallucinations cause people to kill themselves. So, they must cover their eyes. I hadn’t heard of the challenge until I read your post. I can see why some might feel like it trivializes the independence of the visually
January 10, 2019 at 9:47 am
impaired, since it takes time to develop the skills required to go about a day. But I get your point! Being blindfolded certainly would give sighted people an idea of how it feels, and maybe some empathy (not pity). How is that kind of information bad?
January 10, 2019 at 9:51 am
As ever, you have said this so much better than I could. I don’t want to be pitied; I don’t imagine any blind person does, but a little empathy can be a good thing. Thank you for your feedback on this, my friend! xoxoxo
January 10, 2019 at 9:55 am
You said it wonderfully! No – no one does! Pity makes people want to come out fighting. But empathy is how we understand one another – it’s the language of gratitude and peace, I think. My pleasure, Susan!
January 10, 2019 at 10:56 am
You are so totally wonderful, Angela!!!! Thank you for always participating so beautifully and thoughtfully in the conversation!!!
January 10, 2019 at 12:59 pm
Thank you for having me! So are you. 💜
January 10, 2019 at 11:35 am
Angela said it so beautifully I can only nod in agreement.
January 10, 2019 at 11:43 am
In her beautiful and thoughtful comments, Angela so often helps me understand what I was trying to say. Thank you for reading and for your support, B!
January 10, 2019 at 12:56 pm
Thank you, Bojana. 💜
January 10, 2019 at 9:51 am
The movie sounds kind of good to me…did you like it?
January 10, 2019 at 9:56 am
I did! I like Sandra Bullock and the movie itself was well done.
January 10, 2019 at 10:57 am
I like her too!!!! Did you read the book? It is from a book, yes? I will give it a shot.
January 10, 2019 at 1:00 pm
Well, I didn’t even know it was a book! Damn. I like to read them first! But I may have to read it. They’re almost always better. Tell me what you think!
January 10, 2019 at 2:05 pm
I am not sure it is a book; I just thought I read somewhere that it was based on a book, but I may not be remembering clearly.
January 10, 2019 at 2:34 pm
It is! I looked it up and reserved it at the library. Lol
January 10, 2019 at 2:43 pm
I think I will read it before I watch the program! We can compare notes!!!
January 10, 2019 at 2:49 pm
January 10, 2019 at 9:48 am
Hmm, I hadn’t heard about any of this. Why can’t people do “A Quiet Place” challenge? That would make me happy.
January 10, 2019 at 9:53 am
Oh River, I love this!!! That would make me happy too!
January 10, 2019 at 12:06 pm
One word- Heaven.
January 10, 2019 at 10:16 am
you have offered a valuable take on the matter
January 10, 2019 at 10:57 am
Thank you, Billy!
January 10, 2019 at 10:29 am
The most knowledge I have about blindness is the info I’ve gotten over the years from our Blind Welfare Association here in Trinidad and I remember helping a blind lady in town last year, she had only recently gotten blind so she was telling what it was like, she was still learning how to use her cane… I think it’s good to experience how it feels though, it would make a person a bit more understanding when interacting with the blind community… And here in Trinidad the blind community does beautiful handcraft, we have had some splendid musicians, and they even play cricket and participate in special olympics!!!
I like when you write about your experience, it helps me learn some more…
January 10, 2019 at 11:02 am
Thank you so much, Marts! My take is that what you say here, about gaining more understanding, learning how to be more understanding, is exactly the purpose of these exercises. Sometimes and for some people they will work, others not. But, some is more than none. I so appreciate you sharing your experience of the blind community in Trinidad. Opening up and sharing our stories with each other is how we truly learn. Thank you!!!!
January 10, 2019 at 11:36 am
January 10, 2019 at 10:49 am
Well, your opinions are offered with a lot of humor and honesty, and if those are unpopular things then we’re all in a lot of trouble. And reading about people who’ve tried on blindfolds to get an idea of what it’s like to be blind seems admirable, and can give us sighted people a small idea of what it’s like, although, as blindzanygirl said above, it’s not a permanent state. It’s something I’ve tried but I knew I could get out at any time.
And the value of an unpopular opinion–although I hope it’s clear that I agree with you completely on this–is that it can remind us we’re all individuals. The blind community–like any other–isn’t monolithic and needs a variety of perspectives.
January 10, 2019 at 11:05 am
Thank you so much for joining in this conversation, Christopher! I always value your take on things! I love what you say about reminding us that we are all individuals, as that can help us hopefully, see each other through a more open lens.
January 10, 2019 at 11:08 am
Research I came across when doing my dissertation about blind/sighted interaction revealed that Americans feared only AIDS and cancer more than they feared blindness. The fear is real. When I decided to do my dissertation about my mother’s blindness I felt like I couldn’t breathe. I cried for two weeks. When I took down the insulation of humor and scoffing that she had taught us, and I really began to consider what she had lost to blindness, it was very upsetting. And for the record, I like it when you tell us how you really feel. (: xoe
January 10, 2019 at 11:35 am
Elisa, your in-depth experience of so many facets of blindness and seeing it from different views, is invaluable. We could all learn a lot from you. I know that I have and will continue too. Thank you, as ever, for your input and participation, and thank you for championing my tell it like it is attitude! Love you!
January 10, 2019 at 11:18 am
Fascinating post Susan! I tried watching Birdbox (someone got killed on it and I am having trouble with people dying, so I will come back to it later.) I watched her blindfolded-ness and wondered what you would think of it. I am reminded of the book Blindness, which I liked. And Have you read All the Light we Cannot See? I agree that the idea of something bad happening (going blind—being blindfolded—or the idea of my friend dying) is not as scary /tragic as the actual thing actually happening. When it is real, it is just totally different. All my love. S
January 10, 2019 at 11:37 am
I can’t believe, through everything, you have taken the time to read and comment on this. You are amazing, Sarah. Thank you! You know I love you and I am here whenever you need me!
January 10, 2019 at 11:22 am
I love your thoughts on this and totally agree! If they actually had to walk in our shoes it wouldn’t be so amusing to them!
January 10, 2019 at 11:41 am
Thank you so much for reading and commenting. Sometimes I feel like I am all alone, or a total asshole, for my opinions on this stuff. I so appreciate your sharing, and agree, if they could walk in our shoes….. I sometimes think there is no way to completely explain what it is like, especially as it is so different for each one of us. I suppose all we can do is continue to write about our personal experiences and hope that in doing so, we can educate. Thank you, again.
January 10, 2019 at 11:56 am
I agree, totally, Thank you for sharing, I love reading your blog, and am thankful you open up like you do.
January 10, 2019 at 11:59 am
Thank you so much! I enjoy reading your blog as well. Happy Anniversary by the way!!!!!
January 10, 2019 at 12:25 pm
Thank You so very much, I greatly appreciate your encouraging words and speaking through the struggles that come!
January 10, 2019 at 12:39 pm
Empathy and the willingness to learn from others… there’s such a short supply of those things these days. Great post, Susan!
January 10, 2019 at 2:04 pm
I agree…Thank you so much, Steven!!
January 10, 2019 at 12:58 pm
First of all let me say that I’m new to your blog and have been playing catch up. Your story is riveting, inspiring and I think most importantly informative.
After reading your post on the Bird Box challenge I read a few articles. One, published in The Guardian is written by Ria Andriani who I came to find out is a blind musician and freelance writer. Her article cites the conclusions of researchers that the Bird Box challenge leads to “negative bias towards blindness itself.” It goes on to say that people who temporarily blindfold themselves “underestimate the adaptive capability of blind people.” There’s a lot more to the article. I’ve included a link in my comment.
To me, for a sighted person to blindfold him or herself to try to gain some understanding ignores the reality that in most cases real blindness does not go away. I can challenge myself to go a day blindfolded but in the end if it becomes too difficult or if I’m afraid that I might set myself on fire turning on the gas stove I simply can take off the blindfold. There is that comforting reassurance I’m not really blind and there’s an end to the “blindness.” I don’t even know that blindfolding myself would allow me to cherish my gift of sight. Want to put a scare into me? Have a doctor tell me that I’m going to go blind. Now THAT will be the gut punch.
As to the challenge itself, it’s another bit of stupidity conjured up by the same sort of fools who came up with the Tide pod challenge or the gallon challenge or any other bit of stupidity that seem to be close cousins to some fraternity initiations. People need to find other things to do.
Yours is the only blog out of the many that I read that has sent me to the internet to do further research. Thank you. I wish you all of the best.
January 10, 2019 at 2:26 pm
Hi Paulie! Thank you so much for reading and for such an incredibly thoughtful and thought provoking comment. I agree that the bird box challenge is, as you say, a bit of stupidity conjured up by fools. I don’t equate it to blindness. The characters in the movie aren’t blind. I read the article by Ria Andriani and found it both interesting and informative. I appreciate your doing the research I didn’t do! I think there are a lot of mis-conceptions about what it is to live with blindness and what blindness itself looks like. As far as going to the doctor and being told you are going blind, and that being a “gut punch”; I can tell you from experience that it is. I have a disease that is most commonly inherited, but I am the only one in my family who has it. It was a shock, to say the least. Thank you again for taking the time to read and comment. I am looking forward to delving into your blog!!!
January 10, 2019 at 3:02 pm
In all honesty, blindness scares me the most. I remember as a youngster going into a haunted house that was completely BLACK inside! I was so scared I ran back out the entrance! I don’t think a sighted person, without empathy AND the knowledge of a partner, spouse, or child who is blind can understand what it would be like to go legally blind. I do not know what it is like to ‘go’ blind… I would be terrified. Watch the BirdBox. it was a pretty good flick. It was not about blindness but it WAS about not going insane because whatever your worst fear was… you would see it! (The is a lesson in there somewhere but it has nothing to do with knowing what its like to be blind.) You know, I consider myself to be an empathetic person but I have no idea when/if I offend someone who faces a physical challenge, especially all the different illnesses I have begun to learn about! Gwen has helped me with some understanding about the loss of a limb. Steve is teaching me about MS as well as Alyssa. I learn about my fibro from other fibro bloggers. My best friend’s husband has Parkinson’s, I learn about that the hard way as she reveals the struggles. Now you are helping me understand (as best a sighted person can) what losing your site is like. I think what a strong woman you are! All the time! xoxo
January 10, 2019 at 3:58 pm
Oh, Kim, the feeling is mutual! I just read this whole comment to Joe! I agree that the idea of and the reality of blindness are both really frightening. I think most people are probably pretty terrified when thinking of the possibility of going blind. I think the best way for us to learn about all kinds of human experiences is to do exactly what you do; read, ask questions and write! I also love what you wrote about the movie; it sounds really interesting and as you say, not about blindness. Thank you so much for sharing your thoughts about all of this!
January 10, 2019 at 4:06 pm
You are welcome! But I want to thank YOU, incredible lady! All the best dearest Susan. xo
January 10, 2019 at 3:36 pm
You nailed it, Susan. Dave Steele’s wife understands the permanence, the fact that the “blindfold” never comes off. My wife understands the permanence of my paraplegia and multiple sclerosis, which she says we share. That intangible permanence is the difference between a challenge and reality.
I should hope that people come out with a positive experience. “Hey, I did it!” I’d rather people appreciate what I can do than have the ableist notion that I am some kind of “inspiration.” I hope they already appreciate that adapting is hard.
January 10, 2019 at 4:08 pm
I couldn’t agree more, George! Thank you, as ever, for your kindness and support. By the way, your wife sounds pretty awesome….just like you!!!
January 10, 2019 at 4:22 pm
Thank you. She is indeed awesome, but applying the word to me is an overstatement. Best wishes!
January 10, 2019 at 6:48 pm
Have not seen movie. Do not plan on seeing movie. I have nothing relevant to add. I just wanted to let you know you are not alone in the not seeing the movie. 🙂
January 11, 2019 at 6:22 am
First off: A huge thanks for saying my name. Yes world, I exist!!!!! 🙂
I have not watched the show but I am curious. In my opinion if a person partakes in a situation where they have a better understanding what a person with a disability is going through I’m all for it as long as the person uses that experience as a learning tool and not entertainment. If they remember, long after the experience ends, then it was a success.
January 11, 2019 at 6:28 am
I totally agree, Bryan!!! Thank you for reading, my friend!!!!
January 11, 2019 at 6:38 am
I haven’t seen the movie either but agree with your premise. I don’t think there is a deep message intended but a different angle designed to titillate and suck people into the story line.
I think the challenge is interesting but other than that, my opinion is you don’t need to participate to be empathetic about another person’s plight. Maybe it is easy for me to say that because I have issues of my own, but I think I would have felt that way without those issues. I don’t have a compelling need for people to walk in my shoes because they either get it or they don’t and never will. Maybe that is my cynicism talking.
Having said that, I can see how it might be intriguing to try the blindfold thing, but with my balance issues, I honestly think I would fall down not being able to see. Then again, it would give me something to write about. The well has been dry lately and Superman saved my ass by having me participate in that writing relay.
January 11, 2019 at 8:43 am
I don’t recommend the blindfold thing, and clearly the well has been replenished!!!!!
January 11, 2019 at 7:11 am
Your opinions seem very reasonable Susan.
January 11, 2019 at 8:47 am
Thank you, Mark!
January 11, 2019 at 7:59 am
Although we cannot actually walk in another’s shoes, I would think an attempt to experience their situation would be a step in the right direction. I love your perspective! 😊
January 11, 2019 at 8:48 am
Thank you so much! I am totally with you; it is in learning about others and their experiences, that we grow.
January 11, 2019 at 4:42 pm
Hey you! Yeah you! Your opinions are always spot on! That is all. Except… love you 😊💛
January 12, 2019 at 5:56 am
Love you, Walt!!!!
January 12, 2019 at 7:11 am
Love you too! 😊💚
January 18, 2019 at 6:25 am
Such a great post. I love your perspective on it and have a similar one myself. The good thing about this film is that it has got people talking about such a complex issue ❤. Beautiful.
January 18, 2019 at 6:42 am
Thank you so much!!!! I am with you completely. The fact that the conversation is happening is a good thing. I don’t think a lot of people understand what a complex issue it is. I can’t tell you how much I appreciate your taking the time to read and comment on this!!!!
I wanted to tell you that someone referred me to your site a while back, and of course I was already reading your work, but I thought you would want to know that the word about you and the work you are doing is definitely being spread!!!
January 20, 2019 at 12:25 pm
I agree. Starting the conversation about the unknown is always great way to educate.
Oh wow. Thanks for sharing that with me and letting me know. It really does stun me how amazing it is that people read my work and it is so nice to hear.