International Day For Persons with Disabilities 2016, #IDPD2016

Helen Keller…Stevie Wonder…Ray Charles…Rick Hansen…Stephen Hawking…

The Rick Hansen Foundation

There are so many more of us out here, only looking to have rich, full lives like anyone else, but what often stops us is not only society’s barriers, but our own.

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Since 1992, the United Nations International Day of Persons with Disabilities (IDPD) has been celebrated annually on 3 December around the world. The theme for this year’s International Day is “Achieving 17 Goals for the Future We Want” . This theme notes the recent adoption of the 17 Sustainable Development Goals (SDGs) and the role of these goals in building a more inclusive and equitable world for persons with disabilities.

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One note on the society part – some of you may not want to think a lot about it, if you don’t have to, because then it becomes clear that the possibility for anyone to become disabled is indeed a possibility for anyone..

I am a Canadian woman, living with a disability. I didn’t acquire my disability through an accident later in life. I did not develop it overtime, but from birth and still, who knows which direction my remaining vision might take.

On the day before the
United Nation’s International Day For PErsons with Disabilities
I felt a tired feeling that I sometimes get. I panic and assume my sight is worsening, but I am not sure, if that makes any real sense. I close my eyes and decide I will try to get back in to see my retinal specialist soon.

I don’t know what, if anything, he will be able to tell me, offer me as hope that I won’t be completely blind one day. He will probably see no changes or signs of the mysterious eye disease that took my left eye twenty years ago. He will speak to me of gene therapies in various stages of development, but I don’t know what hope lies in that for me. Maybe it will be my future. Maybe not. I’ve learned not to bank on anything.

That’s a part of my DNA, just like the genetic eye disease. I am conditioned to either think the worst or simply not want to hope for the things I may really really want, always fearing that the disappointment from possibly not getting them will break me. It hasn’t broken me yet, which does give me reason to be optimistic though.

I wanted to be able to see the truly unique show violinist Lindsey Stirling put on recently. Instead, I listened to all I could and relied on my helpful sister to fill in the blanks. I wanted to throw my white cane away and yelled my displeasure, and through the wish, but instead I sat and listened even harder.

I want to draw like I used to when I saw colours and when everything in my world was more clearly and brightly defined. I can’t. I want to scream in frustration but I’m resigned instead.

I want to take up the latest craze of adult colouring books, but I don’t.

Of course, nothing is really stopping me. I may not, as an adult, see the lines I may have hardly seen as a child, which are now nearly invisible to me. I could still get myself a Harry Potter or any number of other themed colouring books with a theme which fits my interest, and be damned if I miss colouring in the lines by a mile.

But I don’t. I don’t scream or rail at the world in an uproar. I find other ways to spend my time.

I want to travel and to go through life with an independent spirit and loads of self confidence, but I don’t. I try and I work at it, but I’m scared.

I find a travel series, a BBC documentary, available to me on Netflix. It’s Stephen Fry, whom I love, and he is doing a road trip across the United States in his British cab. I know him from his narration of the Harry Potter books and for his intelligent and witty character. After watching him visit all 50 states I now know he hates being on a horse, dancing, and skiing. He loves science and culture and literature.

Stephen Fry In America

I watch him on his trip and I long to go on one of my own, but I fear getting lost in the big, expansive world and I worry that my white cane will attract only pity. I want to grip it with extra determination and go anyway. It’s all in my attitude, right?

I can’t drive a cab across the country. I want to believe I will see more of the world anyway, even without definition of sight.

I don’t try to revisit childhood experiences of mine by colouring. Instead, I watch a travel show which I’ve heard of but only now decided to give a chance.

HELLO GOODBYE, #HelloGoodbye

The host speaks to one woman in her sixties, widowed after her late husband’s long battle with illness, but who has now found new love with a man from England. Her happiness is infectious. Her newly found love walks down the ramp in the arrivals terminal at Toronto Pearson International Airport and gets down on one knee. Love is lost and can be found again.

I feel warm just by watching and listening to her story.

The host also speaks to a young man and his parents. The son is on his way to participate in Rio, at the Paralympics. He was paralyzed from a diving accident and now plays wheelchair rugby.

And then there was the grandmother, daughter, and grandson saying their goodbyes. The young guy and his mother are heading back to Britain after a visit with Grandma. The mother has RP (Retinitis Pigmentosa). She carries a cane, but the son speaks of wanting his mother to have companionship with a guide dog, as he will soon be going out on his own and doesn’t want her to be alone. He has worried about her safety all his life. She admits to being unsure about going for a guide dog once they get back home, but her son’s words cause her to rethink things.

She grips her white cane. I grip mine. She has been losing sight for years. I’ve been blind since birth and losing since. Am I any further along in accepting my circumstances and my white cane than she is?

People ask me all the time if I am ever going to get another guide dog. I don’t quite know what to say. Yes, they may provide the necessary confidence boost for many. I consider it.

I don’t think any dog will ever compare to my Croche, But is that all it is?

I can’t put another animal through what I put Croche through. She was so well trained and so fittingly suited in temperament. She was given to me and I was trusted with her. A lot went into all that. We were a team, but I failed her.

My ever growing illnesses caused me to sleep and her to dutifully stay by my side, but she was prevented from shining. She was my pal, but I don’t take the responsibility of a working dog lightly. I don’t know what my future will bring and I can’t bring myself to bringing another animal into that.

I want to curse what stops me, but what often stops me is me. And so I would just end up cursing myself, again and again.

Or, I could take hold of my white cane and use it for betterment, for working for some of my dreams, and for hardening my resolve and building my often feeble confidence.

My feelings of shame when I walk with my cane are hard to describe and hard to fight off. I will never be happy if I don’t try. Fear and disappointment stop me from even trying. What a waste that would be.

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.

Mobility Matters

I will lead the blind by a road they do not know. By paths they do not know I will guide them. I will turn the darkness before them into light. The rough places into level ground. These are the things I will do. I will not forsake them.
– Christ

I found the above quote a few months back. Whether you are religious or not, it seemed to me an uplifting statement of a thought. I found

Amy Bovaird

through Facebook and online. Her mention of travel caught my attention and I hope to speak with her more on that in the future. Today, though, I am pleased to be featuring her memoir “Mobility Matters – Stepping Out in Faith” here on my blog.

Check out more on the memoir

Here,

and you can visit her Facebook page,

Here.

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Book Review: Mobility Matters – Stepping Out in Faith

By Amy Bovaird

In “Mobility Matters – Stepping Out in Faith” teacher, author, and ghost writer Amy Bovaird lets the reader in on a particularly difficult year in her life. She is in the midst of a transition from the sighted world into that of living blind.

Pity. Denial. These are the themes found throughout this memoir, but why should others not be pitying us if we pity ourselves? I didn’t know what sort of memoir to expect when I started to read, but I was soon drawn in by Bovaird’s storytelling style of some of the biggest hurdles of her life.

In her Spanish class she disguises her vision loss and develops tricks for getting around her hearing loss.

The Spanish word, “ceiga”, in Spanish literature, meaning destitute, old, and either ill-mannered or helpless woman. She has been teaching others for most of her life. She is about to need a teacher, someone to teach her about white cane travel and that is where blind orientation and mobility instructor Bob comes in.

She has been slowly losing vision for years, but up until now able to brush off the signs and pretend it wasn’t really effecting her life. Her Retinitis Pigmentosa, vision and hearing loss are getting harder and harder to ignore.

She has been to thirty-three countries and has lived in six and she is used to being highly independent. Now it is hard not to feel nothing but pitied. The first time she tries out a white cane and a whole new phase of her life is opened up, even if it takes her a while to see it. The white cane is meant to help the user stand out, but that is the last thing she wants to do. I was abel to relate with that, when all you want to do at times is to blend in and to fit in.

From reading I learned Terms like catastrophizing, a great way of summing up a trap people easily fall into. I could immediately relate to many of Amy’s battles in trying to adapt to a life with less sight than before.

Words like sight, vision, and seeing are explored throughout this book and the interpretations of each of these words vary with the person. Amy is learning to live with one foot in each world, but learns from those in her life that the two aren’t all that different in the end. These people remind her to, “filter her circumstances through a lens of laughter. This lesson in itself sums up the contents of this book. Even during her worst moments throughout this story humour finds its way in through the cracks of her fear of the unknown.

She finds herself caught in a trap of denial and fear of being honest to those around her and to herself. People like Bob show up and make her see that she can keep her independence, even as she navigates a new world with less and less sight.

This is a memoir of faith, but you do not need to believe in God to be touched by the lessons Bovaird learns along the way. This is a terrific book for anyone losing their sight and fearing an unknown and sometimes dark future or for anyone who wants to understand what it feels like to live in a world without the sight most take for granted.

In her own dark moments, the voices in her head (or Satan, whichever you believe) she hears things such as:

You should have stopped teaching years ago. How did you ever think you’d be a successful language teacher? You’re deaf, you know, and the way you manage your class is pitiful.

Would I ever feel like one of them? Or would my differences always set me apart?

I am sure we all feel that at one time or another, but as I read statements such as these from Amy, I was happy, at least, to learn I am not alone in feeling like the odd one out sometimes.

She speaks of feelings such as, “the hard bitter pit” in her stomach. Just such lines in this book spoke to me when I read them and are incredibly relatable. She can hardly imagine a day when she might feel comfortable with these new changes she is being forced into.

When the principal of her school asks her to speak to the students about her blindness she resists, unable to imagine finding the courage to make her situation public, but she soon discovers that she can teach others in more ways than she ever thought she could.

She slowly reveals her blindness to one student, showing the girl the tools she uses to help her read. The student shows her interest by looking into the magnifier, commenting how looking through the monocle makes her eye tired and a little dizzy, like blindness. It can be hard to trust others with what you are going through, the disorientation of it all. Amy’s story shows that it is important to let others know what it’s like because they truly do not know.

She will find acceptance from her students, the other teachers, and people she runs into everyday.

One of her fellow teachers makes her aware that she is not alone:

• We’re in this together Amy. God wants to use us all to the best of our abilities. Even when things don’t go as planned, God has his reasons. So don’t let it get you down. Just go forward.
• • By the end of this book Bovaird has come so far in a short amount of time. She leans on her faith in God and realizes the people in her life have been put there for a reason. She has been taught the tools to succeed and has discovered a motivation and the coping skills for success.
• Amy comes to a crossroads in her life and knows she has what it will take to live the best life possible.

Stand at the crossroadsAnd look; ask for the ancient paths and where the good way is, and walk it and you will find rest.
Jeremiah 6:16, NIV.