Seeing From All Sides, #HowISee #HowISeeIt #SoCS

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:

#HowISeeIt on Twitter

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:

Black Or White #HowISee

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

&

Bold Blind Beauty

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.

TToT: Busy Filibustering and Multiple Blooms, #10Thankful #Bloomsday #CityAndColour

“All your friends seem like enemies, when you’re broken down and empty. “So say goodbye to love, and hold your head up high. There’s no need to rush. We’re all just waiting, waiting to die.”

Waiting – City and Colour

Okay, so why are those lyrics so darn relatable?

Kind of depressing lyrics/quote to start things off with, no? Well, keep reading for further context.

Technology update from this week is just more of the same with my mail program. My new computer seems to be unable to function properly because there are so many. VoiceOVer’s favourite thing to say, when it just can’t work well enough to let me even send an email: “Busy…busy…busy…” I’m beginning to hate that word.

😦

Do you ever feel like you’re so far behind and you’ll never catch up, in emails or just life in general?

Well, I feel that way, but I know it’s small in the grand scheme of things, as this week has been full of more heartbreaking headlines and tragedies and some political filibustering too. (Just love that word.)

Once more, I make the effort to find things for which I am intensely thankful.

TEN THINGS OF THANKFUL

For a successful video chat connection with my writing mentor.

She helps me narrow in on what I’m doing with my writing. I’m glad the technology allowed us to speak again.

She writes about “multiple blooms” – getting more than one chance in life, to become something or create something worthwhile, to bloom like flowers bloom.

This week, on June 16th, it was Bloomsday, like on every June 16th, going back one hundred years.

Irish writer JAmes Joyce’s Bloomsday explained.

I’ve spent so much energy and time coming down hard on myself because I haven’t read all the things there are out there to read. I haven’t written all I want to write yet. Talking to a mentor helps me realize that’s okay. I work on trying not to look at it like I am far behind in these things. It’s not a race.

So, Bloomsday is a day to celebrate James Joyce and his novel “Ulysses” which I haven’t managed to read, though I started it a few years ago.

For a winner so far for best writing group night.

We are a lovely little core group who mostly show up each week. We help each other, cheer each other on, remember one another’s writing and ask how it’s going.

This time involved popsicles.

🙂

The challenge was to write as much as we could, while holding our popsicles, to see how far we could get before they melted.

This is where I feel irritated because I can’t fit in, necessarily do the same as everyone else, and so I adapt. I write on my Braille Display with one hand, while holding and eating my popsicle with the other. It’s not easy to type braille letters and words with only one free hand. I don’t like to get all sticky from a melting popsicle. I managed two sentences, which ended up turning into a pretty cool bit of writing by the end of it all.

This particular time just seemed to produce some awesome ideas and stories from all of us. A few of us may have been sleep deprived, but that lead to some cool storylines.

For a return from trouble with technology.

And so I’d started a story last time, thanks to unforeseen real life events with the group, mostly unexpected religious discussions, and I came out of that awkward situation with the seeds of the perfect story to submit to a Canadian short story contest.

Well, I finished it last week and brought it to read for the group. They loved it. I could tell they were moved. They commented on my incredible level of insight, which they really did say.

But then I pressed a wrong button, overrode that story with my new one, and so I had the opportunity to rewrite it, this time keeping the basic structure and plot points, but narrowing it down to the word limit of 750, as the contest requires. I plan to submit and I like what I’ve got.

Sometimes things work out.

That I get to witness another year of marriage for my wonderful parents.

They arrived at 37 and it is a beautiful thing to see. It’s teamwork at its best. It’s my foundation. (No pressure there guys.)

For time to sit and observe by the lake that bears my province’s name.

I am trying to become more aware of my surroundings. I can’t go to the ocean so easily, but I am lucky to live near the Great Lakes. This time it was Lake Ontario.

I sat and watched the boats and the listened to the birds and felt the breeze off the water.

For opening acts that don’t entirely suck.

Shakey Graves

Many concerts I go to I am unimpressed by the musical act that opens the show. This time, the guy was weird with some of the things he said in between songs, but I was undeniably swept up in how catchy his lyrics were. The sound was great and I was able to sit comfortably and enjoy his Austin, Texas accent. He was a bit of a musical Matthew McConaughey and, surprisingly, I liked it.

For a perfect night for a concert and a lovely outdoor venue to be able to make the most of it.

I love live music, but all the noise and commotion is often enough to cause me head pain that leaves me questioning why I put myself through that.

The answer is because I get headaches, but I won’t let that stop me from enjoying music that I love.

Well, this is an outdoor venue, by the water. It’s open and I sit on the grassy hill and I let the evening air and the music wash over me.

For lovely time spent with my father.

It was Father’s Day Eve and I knew he’d like the band. I know many would do anything to be able to enjoy something like that with their own fathers. I was happy to be there, with as he said, was probably the oldest person at the show. Well, I felt old listening to all the twenty-something’s all around me. So we focused on the incredible show before us.

For the song lyrics I wrote getting their first live performance.

My brother and his musician friends played a selection of covers and the song he and I wrote, which has a phenomenal singer. The drummer is the best around.

A family reunion and the woman at the helm of it all wanted my lyrics to be played, as entertainment for her family day. I wished I could have been there to hear it, but my brother said the whole thing was a big hit.

For a band like the one I just saw live.

Music and family are, once more, at the heart of my gratitude list.

A band like City and Colour has a very mellow sound. That’s why I love them, the lead singer’s voice. Many of their songs allow me to express the sadness I feel, the crappier parts of life, but somehow, listening to these songs helps.

Comin’ Home – City and Colour

“I know that we’re takin’ chances, you told me life was a risk. But I just have one last question…will it be my heart or will it be his?”