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.

IN YOUR FACE

Last Monday, for the

Redefining Disability Awareness Challenge,

I shared a wonderful post from my very own parents, which I called:

Literally.

Last week’s question was answered by my parents, from the perspective of raising not one, but two children with a disability. They will be back again next week with another thoughtful response, but this week it is my turn once more.

🙂

Week Three: Part A

Q: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not?

A: I probably would not be here answering these questions if my answer were no.

🙂

I have had several of these in my lifetime. The main one was the LCA, see

Here.

Then there was the Senior-Loken Syndrome, which included the renal failure and scoliosis.

These, to say the least, made my teen years interesting ones.

I have had many different diagnosis suggestions from neurologists with the headaches and chronic pain I have dealt with over the last ten to fifteen years now. However, unlike the obvious medical signs that I am blind or that my kidneys stopped working or when an x-ray clearly showed signs of a curvature in the spine, chronic pain shows no signs that can be clearly and medically spotted.

All of this is true and yet, I can not let any of it weigh, drag, or generally bring me down for very long. Whether it’s one medically diagnosed disability or multiple, if it is at all possible to get on with the business of living, I would highly recommend doing so, to myself and anyone else out there.

I did not come up with the term and I do my best to deal with it in this society of labels.

I am so pleased to participate in this awareness challenge of disability because I know I must live life, not just with disability, but in spite of it. I have had it in some form all my life and this makes it very difficult to live in any sort of denial, not that I haven’t had my moments. It just becomes a part of you and something that it would do no good to refute. It’s not that it wouldn’t occur to me because I am human and I have my bad days, but I know I must take control of my own life, to take the power away from the cruelty and the harshness that living with the label of disability often causes.

Yes, the short answer is that I have disability as a part of my life and the person I am. This is the cold, hard, in-your-face reality of the situation. I look forward to getting further into the issues surrounding life with disability, with some of the questions I have yet to answer, in the weeks to come.

Check back next Monday for more.

Next week my two parents will be answering the following, Part B:

If you don’t have one, how do you view the concept of disability and the people in your life who have them?

***

Speaking of in-your-face.

🙂

With September being Chronic Pain Awareness Month I wanted to share here an initiative being organized by the ones fighting to lessen the stigma surrounding chronic pain and a new way to hopefully bring attention to this silent and invisible scourge.

I asked to do what I could to help migraine, headache, and chronic pain ambassador JP Summers, and this is what she had to say:

“Here is the information for the Pie Challenge. I hope we get some media attention for the sake of all of us that are tired of our condition not being considered severe.”

Please check out the links below to see what’s being done:

Twitter,

Facebook,

and

Website.

Of course this is a take on the:

Ice Bucket Challenge for ALS,

because every person has their own unique story of suffering and deserves to be heard and helped, whether it’s by way of ice cold water being poured over the head or a pie in the face.

Whatever works and get’s peoples’ attention, right?