October 1st is the start of Blindness Awareness Month.
Okay, so SoCS usually means Stream of Consciousness Saturday, but well Saturday, Sunday, either way.
Many visually impaired people, writers and bloggers specifically, are blogging every day and many are speaking about one particularly controversial hash tag and campaign making its way around Twitter and social media lately.
I re-blogged about this just a few days ago, and though I don’t mean to rehash or restate, I figured I would offer my own thoughts on the whole thing.
When I tried to think of what is AWKWARD,
I thought about these very topics. Blindness means I face many awkward situations, all the time in fact. I try to improve my social skills and interacting with a mostly sighted world, but I often struggle to fit in and feel like I am seen and yet that I don’t stick out, stand out, and get in the way.
I often feel as if I am in someone’s way, but I recognize this is often more in my own head. The thing about the world is I skip past a lot of the more awkward situations, simply because I don’t see that they are even taking place at all.
🙂
As for the idea of a sighted person putting on blindfold for a few minutes and attempting to walk or cook or whatever, I thought on it awhile, as I pondered the thoughts of others.
There is a lot of awkward nonsense going on in the world these days. Why should anyone with a visual impairment feel like they must always be cast as the awkward ones in this nonsensical world?
The Foundation Fighting Blindness Canada (FFB)
They state that their mission is “leading the fight against blindness” and they are doing that through social media campaigns like this one to raise money:
People who are blind share stories and videos of how they do certain, every day tasks, and then their friends or relatives who are sighted will put on a blindfold and try those same tasks.
I know people are curious. I’ve often been asked how I pick out my clothes or how I use the stove. I get that. Most of us don’t mind answering a genuine question when asked. It’s just a fine line when it crosses over to patronizing.
I know foundations who raise money and do research to fight blindness are needed and necessary. I get that also.
I am often told I over think things or am too sensitive, and perhaps I can be, but perhaps that’s an easy, bandaid response for a bigger issue. I often can’t tell the difference anymore, and not sure I ever could or ever will.
😦
On one hand I hate the statement put out there of fighting blindness, like it’s some enemy that needs to be destroyed. I should understand language and its uses better than anyone, but I feel icky when I hear that. I am fighting a constant battle with myself, never mind some war against blindness in a wider context.
However, I would take a cure, sure I would. If it were real and lasting, but blindness isn’t quite so simple. I want attention put on finding ways to stop progression of or slowing down of retinal eye disease. That’s what I have and I often wonder what my life would be like if a cure were suddenly found. Would it be the answer to all my prayers of life? Would it automatically make things easier?
Yes and no, I think the correct answer is, which isn’t really any answer at all to my satisfaction.
So I could rant on and on about this, such a giant thing that I cannot contain, to hope that someone somewhere will understand me, after all I don’t think some lousy blindfold is the answer.
Apologies if this post is long and rambling, with a few links thrown in for good measure. I feel like I am always apologizing for something, to someone. Stop it Kerry, stop it.
But going back to some of my “In The News and On My Mind” posts I’ve shared on this blog in the past, I’ve usually opened those with a line from a woman I know on Facebook who is also blind and living life well. So Here’s her take today, to start:
“The Foundation Fighting Blindness is doing a screwball campaign in which they have sighted people wear a blindfold for a few minutes and try to complete some everyday household task. Naturally, they’re lousy at it, because they don’t have any training. The FFB then has them share their horrifying experiences under the hashtag “how eye see it”, the idea being that blindness is terrible and scary and must be stopped. Well, obviously, we can’t have that rumor going around! For the next week, I’ll be stealing this hashtag to share cool stories about blind people’s actual everyday experiences. If you have a story I should share, send it to me in a message. Today, I’ll share my story. I’m 27 years old and live independently in a gorgeous little apartment in Austin. I’m happily married, work in the field of higher education, and have a wonderful close-knit family and group of friends. I love yoga, hiking, music, poetry, and have recently taken up martial arts. My life is abundantly rich, and has not been diminished by labels or other people’s preconceived notions. This is #howIseeit.”
I do feel it’s simplification for someone who does not live with blindness to put a blindfold across their eyes for a matter of minutes and try to tackle something they won’t feel they could handle without their sight. If they had it all their lives, a few bloody minutes trying without will only muddy things up even more, further blurring the lines between reality and something else entirely.
It feels pitying to me. It feels dumbed down. It feels wretched really.
You panic when suddenly all your world goes dark. Of course. Nothing is how it is compared to if you’ve had time to process and work out solutions we have worked hard to find for ourselves and our independence.
Debates began popping up on people’s social media and on FFB’s Facebook page, in the comments, from both sides. People have accused Foundation Fighting Blindness of blocking or deleting comments that oppose what they’re trying to do with #HowISeeIt and FFB replied that it must have been a misunderstanding, but they usually put the blame onto Facebook and their rules for commenting. Things are getting ugly. People don’t feel heard. It’s impossible for something like this to speak for all. I just want to share opposing views and keep the conversation going.
The point was made that the ALS Ice Bucket Challenge may have had similar responses. I don’t know how many ALS patients felt about it truthfully. Not sure you heard much about that amongst all the screams of shivering cold horror and shock captured in all those videos that went viral. Money was raised. A good thing. Don’t look a gift horse in the mouth I suppose.
But that challenge did not have people living in wheelchairs, unable to move. See the difference?
I see all sorts of lives lived by those who are also blind. Some are doing life more successfully and happily than others. But that’s no different than the rest of the population.
I first heard about a Twitter campaign going around known as How I See, which I wrote my own post for here several weeks back:
Life is neither, sometimes one, sometimes the other. No different for me.
When I heard #HowISee vs #HowISeeIt, I admit I was originally confused and wrote on FFB’s Facebook page, asking for clarification. I did not jump to participate or to get anyone sighted in my own life participating either once theirs was explained to me.
Some more well known visually impaired advocates are taking part in #HowISeeIt, by helping spread that message of FFB, such as a UK poet with RP (Retinitis Pigmentosa):
Stand By Me RP awareness page on Facebook
Of course, different people are going to have different opinions on which hash tag campaigns, websites, and organizations are doing good work and which are furthering myths, stereotypes, and negative views about what blindness is and what it’s like to live with.
Here one visually impaired young Canadian has her story told through FFB.
I have watched many of her awareness videos on her YouTube channel and she has been working with The Foundation Fighting Blindness Canada since she was young.
This may not seem like stream of consciousness writing exactly, with all these links inserted, but I knew it would be close enough, as I feared before I began that if I started to write about my own thoughts on this topic, I may never stop.
Here are a few places where I think we’re on the right track:
Blind New World, #BlindNewWorld
&
Of course I mention all sides because I don’t necessarily think there is a total right or wrong here. People with all sorts of experiences deserve to feel how they feel about these things.
I just make it work with where I’m at today and keep as much positivity and hope alive inside as I know how.
Thanks for listening.
Her Headache 
I think that there’s a likelihood that any hashtag campaign will almost HAVE to oversimplify the matter in order to make it ‘accessible’ to the (arguably able-bodied, sighted) masses. I think I can understand your distaste though – to me it feels a little like suggesting that people ‘black up’ for a while to see what it’s like to wear a different colour of skin – it diminishes the people who live with it and completely skews the perspective of those who ‘try it out’ – it’s not a halloween outfit – it’s people’s actual real lives, and as the other writer said, often those lives are rich and abundant and varied, and it’s insulting to reduce it all to one inaccurate premise.
*sigh*
I think campaigns LED by the people who are in the positions of living these lives are far more likely to spread truth and hope, than ones led by people who are misguidedly trying to help from outside.
Exactly right Lizzi. Over simplification indeed. We need to work together, everyone, but there will never be a total consensus on something like this. Just the way it is. I hope I told this story in a fair and inclusive way. Thanks for reading and offering your own perspective.
Thank you for the mention Kerry!! I like what Lizzi said b/c I’ve been trying to put my thoughts into words but keep coming up empty. I do believe the FFB’s intentions were good afterall Gordon Gund, co-founder and prior chairman of the FFB is blind and he’s spent a great part of his life and a boatload of money seeking a cure. When I was working and raising money for the VisionWalk one of my team’s fundraiser was a dining in the dark luncheon however we had an in-depth discussion following our meal to discuss some of the social issues when it comes to blindness. Attendees came away a little more enlightened even though they were blindfolded for a little while.
Yes Steph. You are welcome. Your efforts deserve a mention for sure.
I don’t mean to come off judging this guy’s intentions. I don’t know him. I am just as hopeful of a cure in the future, but I don’t hold my breath for it. I feel differently about it every day when I awake.
I have thought before that I’d like to work in one of those dining in the dark restaurants. There is one in Toronto I believe. I never did have the fairly common job of waitressing or whatever and always think it must be a great observation post for the customers that you inevitably encounter and I always excepted this job would be a valuable experience, or was I lucky I didn’t have to do it, or perhaps a little of both?
🙂
Hmm.
I hear you, Kerry – and I had some of the same thoughts. I inherently think it’s better to strive for something than to fight against – a lot of energy is spent dealing with the resistance.
Once, in high school, my psychology class took a field trip to an institutional living facility. It just so happened that my profoundly disabled uncle, who has been blind since he was a toddler, lived there. Each of us was given adaptive gear to simulate some disability, and I was given blindness –
It made me frustrated and disoriented to be blindfolded – especially since I don’t do so well finding my way from here to there under the best of circumstances, and these were unfamiliar surroundings.
On the other hand, I’ve experienced total darkness on several occasions. There was no window in my childhood bathroom, so, if the door was closed at night, it was completely dark. My husband and I have gone deep enough into a cave to have no natural light, both underwater in scuba gear and on dry ground.
I never had anything particular I was trying to do at those times – so it was all about the experience. The dark was rich, textured, and strangely intimate. It was far less oppressive than embracing – rich with the possibility of what might be there, unseen.
The thing is, it’s still not the same, because I knew each time that I could turn on a light or open the door, and see again. There is something dismissive about comparing the voluntary experience with a condition of someone else’s existence. It makes certain assumptions.
It’s always thought-provoking and perspective building to read your posts. I wish you far less awkwardness than feeling that the place you occupy is right and natural, if that makes sense.
I would love to reblog this post, if you’d be OK with that.
Wow. This was a beautiful comment. Thanks for your thoughts and the sharing of your experiences.
I apologize for my delayed response. You can absolutely share it. I would appreciate it actually. I know a blindfolded simulation works well on social media, but hearing your thoughts and sharing mine, that’s what will improve understanding and bring us together, all of us.
Those cave excursions sound wild and I wish my claustrophobia weren’t an issue, but I was in one cave, in Germany.
That swimming with scuba gear part sounds exhilarating to me. Where was that?