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.

Just Jot It January: Starts, Stalls, and Blank Slates For Writing, #JusJoJan

I am equal parts afraid and optimistic. I am a lot hesitant and somewhat hopeful. The fear that I could go a whole year and not get anywhere at all clings on tight. On the other hand, I see a wide open year ahead as full of unknown possibility and promise of something great.

So Close – Shawn Hook

You never know the experiences you might have, the events in life that you just can’t plan for, and the people you may meet, who may come into your life for all kinds of reasons, for the short term only or for longer.

Just Jot It January #JusJoJan

It’s 2016 and I didn’t write a post about my hopes for the coming year. I focused on summing up all that last year brought, in the hopes that this year will deliver just as many delights and wonders.

I didn’t look too far ahead, while last year went along, but now it has arrived and all I see now is a whole lot of openness, life to be lived, but how…I can’t say for sure right this minute.

When I was a child, growing up in the 90s, the far-off date of the year 2000 seemed far enough off to me.

In 1996 I was feeling increasingly unwell and I would need all the strength I could muster to get through the following years.

I turned the big 16 when the new millennium hit. The thought of turning twenty, in 2004 was a strange one.

After 2000 the years seemed to blend into one another, being marked, here and there, by a memorable event or two.

This year, 2016, it will be ten years since my sister and I bought a house.

What do I know for sure about 2016: Will I keep writing? Will I take chances? Or will I shrink away from life?

Will I finally get as comfortable with my travel website as I am with this one? Will I fail at that, having to face the fact that I should have stuck to what I know, even if very slightly?

I am looking forward to

Girls – Season Five

next month. That’s really as far as I can see, yet, for the year.

I Will have been blogging for two years during this 2016 year. I will turn thirty-two in 2016.

I have not resolved to do anything this year. I read about how I too can become a freelance writer, that it’s just “that” easy to make happen.

I want to work toward more organization, in my emails and in my writing. My mind can’t fully organize and prioritize. I feel stuck and stalled a lot of the time.

I think it may be a January thing, as much as I try to fight it. I equal parts look forward and celebrate my birthday next month and dread its significance, just like I do the speed of which the years seem to come up on me. They hold me back from a lot, while simultaneously dragging me forward with them.

I see those twenty years older than me who are just now taking steps to better their situations. Do I have to wait that long?

What about the state of the world in 2016? The world’s human population increases, while our habitat encroachment and destruction threaten wildlife. There’s hunting and environmental devastation. Animals are going extinct. What will the state of all this look like in 2066, fifty years from now?

I focus on my own life for 2016 and then I think of the wider world. It’s an in-and-out focus.

I want something great, something grand to happen to me this year. I don’t want more mass shootings and political bickering. I don’t want a certain person to win the US presidential race next fall.

I want to skate again. I want to enjoy a concert. I want to celebrate that my brother is still with us. I want my loved ones, those who are wishing hard, to get everything they deserve. I want my niece to keep learning and growing. I want my sister to find strength and faith that my nephew will do great on his first day of school. I want to remember that 2016 includes the existence of all three of the children in my life, being here was a time, not so long ago, that they weren’t yet with us. I want my friend and her daughter to find their way together, starting a new adventure, somewhere out there in the world.

This year can be great, if I have faith myself. I can’t close off my mind to what could be, just because I can’t yet imagine all that it might be.

This is only January, the first month of 2016. I need to remember that the year’s just warming up, to pace myself, and to give myself a break and a fair chance to make it a good one, the best one.

The rules for Just Jot It January are right here.

For today’s prompt, Linda decided to list the things on her bucket list, one of my favourite things:

http://lindaghill.com/2016/01/05/just-jot-it-january-5th-2016-my-bucket-list/

Check out Fiona’s Favourites, for more here today,

on the new year of 2016.

A Day For Dreams

“Let us not wallow in the valley of despair, I say to you today, my friends.”
—Martin Luther King Jr.

On this week’s edition of

The Redefining Disability Awareness Challenge,

there are several things criss-crossing here.

Today’s Memoir Monday is not only about my memories and about redefining disability, but it’s known as Blue Monday, I am still spreading my message for #1000Speak, and in the US it is known as Martin Luther King Jr. Day.

so how are all these things connected?

So how can I speak about all of these? Well, I’m sure going to try.

🙂

Last week I answered a question for RDAC about the biggest challenge I face with my disability,

Making The World Accessible: The 75% PRoblem.

This week is asking about my family, but from my perspective on things and I feel the answer lies connected with my post from last week.

***

Q: What do you think are the biggest challenges that your family members face in regard to disability?

A: I think the biggest challenge, for my loved ones, is not the disability, but the rest of the world…

(Stop me if I’m way off here guys.)

:)))

I am lucky to have them and I know it. I was not neglected or mistreated. I was not loathed or resented or given up on.

So so far from all of those things.

My family love me for me, exactly who I am. It’s the rest of it that worries them.

Martin Luther King Day is mostly celebrated in the country of his birth and of which he lived. Although it is celebrated in the US mostly, I did learn that Toronto is one of the other places where today is a celebrated and a recognized special occasion.

I choose to use “I Have A Dream” to illustrate my point and to answer today’s question.

Martin Luther King spoke, in his famous “I Have a Dream” speech about segregation and about his dream of a desegregated population.

I know it can not be compared, not really, but I can’t help feeling a deep connection with this day, with this speech, and with the man who gave it.

I am white and I do not know what it’s like to be treated differently because of the colour of my skin, but I do know what it’s like to feel closed off from the rest of the world. I know how it feels to be segregated, in more ways than one, from the world around me.

I listen to King’s powerful words and I feel a tingly sensation to my core. I have dreams too.

So do my loved ones.

From the first moment it hit my parents that I was going to face some difficult times growing up, due to the fact that I could not see like everyone else, they had a dream.

They had a dream that my brother and I would be able to grow up and become adults, in a world where differences weren’t emphasized for their separateness and frowned upon, but instead celebrated and highlighted for the uniqueness introduced to the world.

They had a dream that I would find friends, get an education, and find my place in the world. That I would find employment, acceptance, and love and happiness, all the same things any parent would want for their child.

***

“That all men, yes, black men as well as white men, would be guaranteed the “unalienable Rights” of “Life, Liberty and the pursuit of Happiness.”

***

King was speaking about race, but not only that:

“from every village and every hamlet, from every state and every city,” and “black men and white men, Jews and gentiles, Protestants and Catholics,” were all mentioned here.

Disability was not. I believe we are embarking on the days of fighting for the rights of those with disabilities, in a way, like society was at with race fifty years ago.

I know these struggles are ongoing when it comes to race, but they extend to anyone with a disability. society is slow to adjust to the differences it sees and feels unable to cope with. This is the challenge my parents especially must handle.

They never stop worrying about us, not even as we’ve grown into adults. They will never stop.

What do they worry about when, one day, they won’t be around to watch out for us any longer?

What do my two sighted siblings worry about? Do they fear, not selfishly but realistically, once they must take on any perceived or real extra responsibility, with selfless concern for us?

When that day comes, where in life will I be and how much farther will the rest of society have come in regards to acceptance and inclusion?

It is a mostly silent and behind-the-scenes disregard. It is not openly hostile, like it has historically been for those of other races. There has been educational segregation. This has slowly lessened as time has gone on.

It’s hard not to feel feelings of bitterness and anger sometimes. I know my family have felt it for me, feelings of indignation for how the world sometimes looks down at me for daring to have a disability which makes a lot of people ucomfortable. The challenge, for me and them, has been to not let those feelings control how we’ve looked at the rest of the world.

King spoke of “their destiny being tied up with our destiny.”

Maybe one day soon the world will realize that we are all one, connected through being human, regardless of our differences, be them skin colour, religion, or our abilities.

King goes on to speak about dignity. The challenge, in my case, is to find this right to dignity that we all are entitled to. The challenge is to find it and I owe my family for all they’ve done to help me get my share.

I was lucky to be born here in Canada. My family have never truly had to discover what it felt like to be fearful for my physical safety.

I do not mean to say that the experiences MLK spoke of are all that similar to those of someone, like myself, born with a disability. However, there are just some similarities that I can not ignore.

It all boils down to dreams in the end, the dreams we all have for a more tolerant and loving society.

***

“I have a dream that my four little children will one day live in a nation where they will not be judged by the colour of their skin but by the content of their character.”

***

This is possibly the most famous line from King’s “I Have A Dream” speech.

My parents too had four children. Their biggest dream would also and always have been that the four of us (two born with disabilities and two not) would grow up in a world of less judgement of those differences that stand out, and more recognition of the way we treat others and conduct ourselves, as kind and decent human beings.

This is the challenge, to learn how to deal with an imperfect and fallible world, all while remaining happy and safe within that world.

***

King said: “the rough places will be made plain, and the crooked places will be made straight,” and this is a challenge that my family all must tackle. They must know how to trust that our path in life, literally and figuratively, will be a safe enough one for my brother and myself to walk along, whether with them or by our selves.

They had to discover, from the first time I fell or hurt myself on an object in my path that I did not see, that I would be okay and that they could not protect me from everything, all the time.

***

A huge part of King’s words were about discrimination, the word and the act of discriminating against someone because of the colour of their skin.

discrimination comes in many forms and I have felt discriminated against, of course, in my own way. I was spared violence and outright hatred, but I felt looked down on still. I felt lesser than and like something to be ashamed of and hidden away.

My family must look in on this sort of thing, often from the sidelines, and feel the helplessness of how far we have yet to come.

We may be fifty or so years ahead of King and his words, but the challenges to the dream we all have are still there.

***

So much of this speech stays with me and gives me hope whenever I hear these words, spoken so eloquently.

Over the next month I will be writing all my blog posts with #1000Speak on my mind.

1000 Speak, About

I will get through the cold winter days to come, speaking my own message of hope, with the words of Martin Luther King running through my mind, and the energy I feel from 1000 Voices Speak For Compassion because it all comes out to the same thing.

I have my own dream for the world and my compassion and the compassion of others is at the centre of all of it.

Martin Luther King Jr.’s I Have a Dream

“And so even though we face the difficulties of today and tomorrow, I still have a dream.”

Resource:

http://www.americanrhetoric.com/speeches/mlkihaveadream.htm