TToT: Woman In Black Blouse Holding Black Bow – Shadow Bowing, #10Thankful

“I can never read all the books I want; I can never be all the people I want and live all the lives I want. I can never train myself on all the skills I want. And why do I want? I want to live and feel all the shades, tones and variations of mental and physical experience possible in my life. And I am horribly limited.”

–Sylvia Plath, “The Unabridged Journals of Sylvia Plath”

Caption: Woman in black shirt smiling and standing.)

There is an App for the visually impaired where you can take a photo of anything you are in need of describing and send it away and, within seconds, an answer is given by someone somewhere who has viewed it and explained it to the best of their ability. Well, that’s the first reply given when I asked what the above photo showed. The second I used for the title of this week’s TToT because I thought it strangely eerie.

🙂

Have you heard of “shadow bowing”?

That is what I am doing. Supposedly, (as YouTube is a totally reliable source on this), I’m quite sure – if you want to practice moving your violin’s bow in a perfectly straight line, you take an empty toilet paper roll and work at moving the bow through it, over and over again. Well, let’s just say, I thought it worth a try, yet highly amusing at the same time.

The week started out badly. It wasn’t a great week at all, to be frank, but I still think I can come up with 10 things to be thankful for. Come along with me and let’s see if I can.

🙂

I made a decision, as February and its extra day came and went and March began, that I will cut back from the daily blogging I’ve been doing since the start of 2016, and will cut back to only weekends and these blogging hops and link ups I so enjoy.

I will use my weekdays to focus on my violin and writing for other places, specifically the memoir I’ve wanted to write since I was fourteen years old.

TEN THINGS OF THANKFUL

For rare disease awareness.

I shared, back when it first came out, an article I wrote which was published on The Mighty:

Rare Disease Day, 2016: Even Rarer Than A Leap Year

Well, the official day of recognition was on a leap year this time round, making it extra special.

For a song that inspires me.

Scars – Emmanuel Jal Feat. Nelly Furtado

I was shown this one by a friend, but although I could tell just by listening that there was depth and significance in the words, the music, and in the visuals, I could not see what was taking place in the video for the song.

Well, my friend explained what happens throughout. I could tell it was important, with the sound of the train at the beginning, but I now listen to this every night before I go to bed. It reminds me that we all have our struggles and our burdens to shoulder. I want to write my story, to tell of my particular tale, while this song plays on repeat in the background in my head.

Check it out if you have a moment. It’s beautiful.

For books and their creators.

As the quote at the start of this post shows, I love books for so many things. I will never be all the things I want to be, but books get me a lot closer.

This week was World Book Day.

I found myself in my nephew’s room, one day in the middle of the week, and my mom began reading “What Pet Should I Get?”, unaware that its author was celebrating a birthday on that exact same day. I celebrate Dr. Seuss and the genus he was with words.

He was highly skilled with them, words that is. He was able to stand out, reach children, and as I would love to write a children’s book someday, I try to study his brilliance, hoping always that something of it may rub off on me.

For a much needed laugh or two to brighten up a rough week. I love the coming together of a child’s imagination and the acting talents to bring it to my screen.

I did not watch anything surrounding Academy Awards mania, but I think this is better than any of the movies that actually got nominated for a trophy.

🙂

I was riveted by both these performances.

Kid Theater with Tom Hanks (Bridge of Spies)

Hanks deserves the award for that, don’t you agree? Possibly even Jimmy. If you need to smile, watch only this one Oscar performance.

For a hot shower to help with head and limb pain.

For another chance to share my writing, as part of a wonderfully important blogger series:

#BeReal – KERRY KIJEWSKI

I was glad to get some of my feelings out and on the page in a supportive environment like Hasty’s blog.

For new car smell.

I don’t know exactly what that fragrance consists of, so feel free to enlighten me, but I know it is in the materials of a newish car and it doesn’t last forever – just like most things in life.

🙂

Whatever it emanates from, it brings back nostalgic feelings that are indefinable, but warmly welcome.

For my first actual violin recital.

Not playing. Oh hell no!

🙂

Just attending, but it was highly inspiring and motivating.

I write about the experience here:

Flower of the Night

For the chance to work creatively with my musically talented brother.

Caption: Smiling man playing violin.

🙂

This was the explanation we received for the photo of my brother holding my violin.

He is a guitar player mainly. He and I decided we would try to write a song together. He has written the music and now I am faced with the new challenge of listening to it, letting the music move through me, and feeling the words and letting them come to me.

I try to lighten the mood because I have written lots of things, but never song lyrics. It’s a bit like poetry and I always doubted my skill with that. I hope it is something I can do. The challenge to myself is a tough one. I just think it would be neat to do that with him.

For beautiful pieces of writing, from such creative and talented bloggers and writers. This lovely memoir post I just had to share.

Where Is Home – Yvonne Spence

Several months back I came across multiple beautifully written blog posts and shared them here, stating my intention to share a couple that were particularly influential on me, here on the TToT every week.

Well, I didn’t follow through, but better to do it when inspiration strikes.

Home – Phillip Phillips

“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You’re on your own. And you know what you know. And you are the one who’ll decide where to go.”

–Dr. Seuss, “Oh, The Places You’ll Go!”

Long Time Coming

It’s been a while, three weeks to be exact, since my last post for

The Redefining Disability Awareness Challenge.

I can see! I can see!

Well, while “I can see!” would have been a great reason to miss a weekly feature like this one, I was actually participating in a monthly blogging initiative and getting pulled into a stupid mistake.

More about that later this week.

***

Q: What things are most important to you when it comes to media representation for people with disabilities or your disability in particular?

A: There is a lot to this. Hard for me to choose just one thing, to even attempt to narrow down the subject matter.

I do know there was a lot of talk, in speeches at the 2015 Academy Awards, about being who you are and standing up for homosexuality, gender equality, and other rights for those with disabilities.

There were several films about people living with disabilities that were nominated or that won awards.

A blind person can’t act.

Well, okay they can, but they don’t. I think it’s a strange thing. I did it a few times.

Granted, it was only a small part in my eighth grade school play, but I admit I felt the adrenaline of being up there, on stage, in front of a crowd.

Not seen. Not heard.

There was a recent storyline on a popular daytime soap opera recently.

A character on The Young and the Restless went blind in a fluke and a terrible electrical accident.

At first he was really angry and threatened to return to his old habit of drinking, to dull the pain of feeling like a burden.

Okay, not so out of the question because going blind, so suddenly, that could happen.

Now, I am aware soap operas aren’t normally known for their authenticity. They often have crazy and outrageous plot lines.

This particular soap had a character, back in the nineties, that was blind.

This time, this particular character’s blindness was a temporary affliction. It was never intended to be permanent.

“What kind of a man can I be for you? I can’t even see.”

This line hit a nerve, when I heard it. Of course he said it while drowning in self-pity, but it’s all in how things are perceived and portrayed.

The character got a wake-up call and began to learn braille. He took on the responsibility of his own independence and began using a cane.

This storyline was used to run a certain course, to play it’s part. Then it was over.

Media is a very powerful force in most people’s lives, whether they want to admit that or not.

The media does have a certain responsibility for how it shines a light on disability in our culture.

As long as disability is seen as a burden and an affliction, in the medias eyes, that is how everyone else will see it too.

Change does come, if not interminably slow from the perspective of those eagerly awaiting the change in question.

I am currently checking out the Netflix original series: Marvel’s Daredevil.

A blind superhero. What do you know.

Netflix Begins Audio Description For Visually Impaired

What’s cooler than a Marvel superhero?

Making one of these cool guys blind can only help in the media representation, right?

Well, that is yet to be seen, but I have been reading about the outcry to make the show watchable for the very people who might want to watch this phenomenon play out and couldn’t.

The Accessible Netflix Project

Advocates, such as Robert Kingett, are fighting for accessibility. In some cases, it’s working, slowly but surely.

Of course then there’s the inevitable counter-argument to be made, and it has been made alright.

🙂

I read a recent Facebook status from a visually impaired guy on my newsfeed that questioned why only a series about a blind superhero would be given audio description.

Netflix seems to be making other shows accessible as well, but only time will tell how far this goes.

I haven’t even gotten this to work for my television.

At the start of certain shows now, I will hear an announcement to let me know:

“This show is available in descriptive for the visually impaired.”

Unfortunately, I haven’t even figured out how to access this most of the time.

It’s not made easy.

I am now working on Netflix. I would like to give Daredevil a shot, to see if it’s as brilliant a show as others have said and if I can let go of my own issues, to just enjoy the show and the character, and not let the hype bother me.

Because like a lot of human beings, I am rarely ever happy and satisfied.

When there are no visually impaired characters represented in the media I am upset.

Then, as soon as one appears (slow progress, like I said) I am still not appeased.

I can be as fickle as the next person. I don’t know what will bring the best kind of awareness and what is the best way to represent the section of society that is often seen as lacking or poor off.

I am off to see if I can figure out how to access audio description for Daredevil.

After Fan PRessure, Netflix Makes “Daredevil” Accessible For The Blind – NPR

***

Do you think disability is represented well enough in the media? What do you think could be done yet still?

Do you watch “Daredevil” and what are your thoughts on a blind superhero?

https://www.youtube.com/watch?v=qw-mItvdS7o

Redefiiong Disability on Facebook

My Free Five

It’s been a while, two weeks in fact, since my last post for

The Redefining Disability Awareness Challenge.

As a refresher, my previous post for the challenge, on Memoir Monday two weeks back:

Indefinable, Undefinable? Definitely

This week I am given free rein to speak on whatever just so happens to be on my mind.

🙂

***

#1 Emily’s Oz

On Facebook I came across a post about a commercial that would be aired during the Academy Awards. I watched the Canadian broadcast and saw no sign of what they were talking about all evening, but that is where the internet is so wonderful.

🙂

I am including both commercials: with descriptive and without,

(Emily’s Oz, without descriptive).

I recommend watching both short commercials, paying attention to compare the difference between what it’s like to watch, with and without the descriptive track.

It reminds me of those commercials: one has a woman arriving home with a bag of groceries and being frightened by something and the other is a woman panting and yelling and being told to push.

These are to advertise the need for descriptive services for television and films.

In the former, is she being frightened by a mouse or by a child?

In the latter, is she helping to move furniture or is she having a baby?

🙂

Just this weekend I tried to watch an important documentary on a brutal attack on a woman in India. I found I was unable to watch for a lot of the hour because there were only subtitles, which caused me to miss out on more than half of what was being said.

Of course, the example I give here is much more lighthearted, but I just wish something like descriptive for watching any programming wasn’t still so hard to come by.

Anyway, I thought that Emily was pretty cute and figured today was a good time to share her and the project built around her.

For a behind the scenes for the making of…check out:

The Making of Emily’s Oz

#2 TED Talk On Why Disability Does Not Equal Inspiration

I immediately heard the term this Australian comedian used, “Disability Porn” and I was drawn in, but not for what it might seem like.

🙂

All icky jokes aside, she makes some excellent points in her talk, of which I highly recommend.

Disability Porn – Definition: The objectification of one group of people (living with a disability) for the benefit of another group of people

She believes that having a disability does not make someone exceptional, but questioning what we’ve been taught to believe about disability does.

I couldn’t agree with this more.

I have grown very uncomfortable of late with the idea of being seen as overly inspiring by others.

I know. I know. This probably makes me come off as a bit self deprecating and the rest. I don’t mean to seem like I am being bashful or unwilling to accept praise when given it. I have been called inspirational before.

I just wish, sometimes, it was not all because people are so amazed I can function at any sustainable level. Yes, I can brush my own teeth, hair, dress myself, and cook a meal. Shock of shocks.

Just because someone can’t themselves imagine how they would do these things if they could not see, does not mean I should be praised for something I am saying I have no problem doing. If I say it I mean it.

Stella says in her talk that someone wanted to present her with an achievement award as a teenager, but her parents turned it down because, in their eyes, their daughter hadn’t done all that much to deserve special attention and praise.

This could be seen as mean-spirited or unfair, but I “admire” her parents for taking a stand, when they showed others that they didn’t really think of their daughter having done anything all that spectacular.

Others might not have taken such a stance, but I applaud them for not singling her out. We hear the word inspiring and that automatically must be a positive thing, right?

I may be called ungrateful or a jerk for seeming to push away a well-meaning compliment, but just think about what Stella and myself are proposing.

It isn’t our job as people, who just so happen to be living lives others can hardly fathom, to be here solely to inspire.

I myself have been guilty of it: of saying I must be grateful when looking at someone who has it worse off than me because it could always be worse.

How do you or I think that makes that other person feel to hear that? Oh, so they think we’re inspirational or they are just glad they aren’t us.

This speaker, unfortunately, has passed away now, but this awesome and cut-to-thecore TED talk made me think and it was just the sort of radical idea I guess I had been looking for myself, although I just couldn’t vocalize it in the way she did.

RIP Stella

#3
DRUMSTICK FOR A BLIND MAN, PLEASE!!!

One thing I like least is hypocrisy, but I am as guilty as the next person of exhibiting it.

As I grow older, I suppose, I become more and more uncomfortable with things like my number three today.

I even recently answered a question for this very challenge about the

Blind Bonus

sometimes given to myself and others.

When I was sixteen I got a trip to California from an organization who awards wishes and dream trips to young people with disabilities. I wouldn’t trade that experience for anything now, but as I look back I feel a strange discomfort.

A blind man holds up a sign, like they would have done hundreds of years ago, as beggars on a street corner. This feels wrong to me.

Don’t get me wrong…Dave Grohl was a stand-up dude for fulfilling the guy’s request, my own blind brother received a pair of drumsticks from R.E.M. once, but I just wish we didn’t have to use such a thing to get attention and gifts.

I make jokes and I share this story because it really was a nice thing to do and supposedly the Foo Fighter’s front man is known for granting such favours; there’s nothing wrong with giving a dying cancer patient something they greatly long for. I don’t mean to take it all so seriously.

Take what we can get, is the “blind bonus” motto, but I honestly don’t think, as an adult, I would want to hold up any sign.

#4 Would You Rather?

I recently came across a Facebook status on an author’s page. The game of “Would You Rather?” is played often on such FB pages.

This time the question was:

Would you rather…be unable to speak or be unable to see?

I generally do not like these kinds of questions. I have often thought would I rather be blind or deaf…and I guess that’s a question for another day’s post.

😉

I wasn’t so bothered by the question, in this case however, as I was to read the responses and to see that nine out of ten people said they would rather be unable to speak than see.

It just sort of shocked and saddened me to realize how much fear there is out there about losing one’s sight. I thought, to be unable to communicate one’s thoughts, feelings, and needs through words might be more of a concern to those answering.

A common response I saw was: “I could still write down what I wanted to say. At least if I couldn’t speak I could still read. I need to be able to read books.”

Coming from those on an author’s FB page I wasn’t so surprised to hear that, but I did reply with the solution that I assumed might be more well-known. There is always the technology to read without sight. Audio books are becoming more and more common. These things don’t immediately occur to most people and I get that.

I just know that people take for granted being able to relay to someone else what they want. I know of people who can not do this and I have seen how hard that is, for everyone involved.

The fear of blindness is just so common and I am left feeling like the monster everyone is afraid of. I realize it is the blindness not the person they are referring to, but here I share my biggest fears with disability. That is what this challenge is all about.

I will tackle the question of how I feel about my own blindness and whether I would choose to see if I could, in a few weeks time here.

#5 Disability Confident: Rethinking Disabilities

“Would you like to have higher employee retention, lower absenteeism, greater innovation, and profitability? It’s possible…if you change your thinking.”

Who wouldn’t want this, right?

🙂

This was the pitch by the Ontario Disability Employment Network to attract businesses to attend their one-day conference on the benefits of hiring people with disabilities.

At the start of February I was watching a program on my local television channel here in Ontario:

TVO.org – Creating a Barrier Free Ontario – On The Agenda with Steve Paikin

On their nightly program they focused on a conference being held the day after my birthday, at a hotel in Toronto, and I immediately perked up. It definitely sounded like something I would like to attend.

Ontario Disability Employment Network (ODEN) – Rethinking Disabilities Conference, Toronto

It goes on to say the benefits already found are that companies who hire those with disabilities are found to:

**revolutionize their workforces and delivering bottom line results.

And at the conference attendees would be:

**Learning how to leverage the latest in progressive employment practices to put your organization at the forefront of a new movement.

**You’ll hear from business leaders from across North America who have embraced this new approach to hiring and are now disability confident.

**Build your knowledge and learn about a whole new way to create an inclusive workplace and gain a strong competitive advantage through improved culture, loyalty and employee innovation.

Disability confident…hmmm.

I was intrigued to listen to the program and maybe even attend the conference. I knew it was for employers more than myself, and was happy to hear about the fact that these conferences were happening, but maybe if I were there I could represent more of those who are in need of the chances to prove our skills and worth.

I didn’t want to look at it like that.

I guess though everyone must prove their worth and skill to an employer and I have always wanted equal treatment and consideration.

The term “disability confident” was an interesting one to me, but I couldn’t quite figure out why.

I looked into the specifics of attending and emailed someone in charge. I received a reply very quickly, which was most appreciated.

It looked like they were happy to have me there, if I were willing to pay the price of admission.

I suppose businesses are able to afford hundreds of dollars for a one-day conference which might help them achieve everything I listed above, but I certainly could not afford it. I was not one of the people on Steve Paikin’s program: a lawyer or a politician. I was on fixed government income and assistance and one of those hoping to get off those one day.

This is not to complain because they gave me a discount, but unfortunately it was still more than I could spend, even on a worthy cause.

It was too last minute and they informed me:

Hi Kerry,

So sorry I didn’t respond to your email sooner. I was out of town at the end of the week and it slipped by me while I was trying to catch up.

Unfortunately there’s not much else I can do this time. Typically we try to keep 2 or 3 complementary passes for situations like this but we are running very close to the wire and may even lose money on this particular event. As a not-for-profit without any financial resources, we just can’t afford to do that. Our food costs for the day are running almost $200 alone, plus there’s all the other expenses.

I hope you understand our situation and perhaps we can accommodate you at a future event.

Thanks,

Joe

—–Original Message—–
From: Kerry Kijewski [mailto:kkherheadache@gmail.com]
Sent: February-05-15 9:35 AM
To: Joe Dale
Subject: Re: Inquiry

Hello Again,

Thank you again for looking into this for me and for offering me the discount.

Unfortunately I am unable to come, due to the cost.

This is really a shame because I saw the program on TV the other night and I am very passionate on the subject of it and this conference.

It’s unfortunate, again, because I am not one of the lucky and hardworking few, like on that program the other night, with a well paying career. I am one of the majority of people with disabilities who hasn’t had so much luck finding jobs and thus I am on government assistance and am unable to afford this conference.

I just figured that it might be a positive thing for me to be there, as I am one of those for whom the speakers are going to be speaking about.. I am not happy with the current situation and would love to see improvements on employment opportunities for myself and others with visual impairments.

I am saying this just to explain why I seemed so interested in attending your conference and why I now have to decline.

Is there any other conferences or public forums you could recommend that I could afford, that are about these issues?

Thanks for your time.

Sincerely,
Kerry Kijewski

I included the above email exchange to show that I did my best to inquire and explain my situation and they seemed to do their best to accommodate, however it was not enough and did not work out in the end.

“Join the movement that is changing the face of Canadian businesses and building a powerful new economy.”

http://www.crwdp.ca/en/rdc

I hope to find a conference of some kind, relating to these issues most important to me, sometime in the future. I would like to get involved somehow and am passionate on these issues and thought this would be a good topic to end with for this week’s free posting.

***

Hope you enjoyed my Free Five today. I borrowed the framework and idea from something new I am trying and of which I started a few weeks back, with the following:

In The News and On My Mind: #1000Speak Edition

I hope to continue, on Wednesdays mostly, but have already veered from the plan I had for it when I posted it.

🙂

I don’t know what the future of Redefining Disability is, as these things rarely go as planned when the bloggers who come up with them start out. Like #1000Speak, this one took off and Rose of

http://rosebfischer.com

had no clue anyone would even want to take part in the beginning.

I will go on because I like devoting my Memoir Monday to this topic and because Rose came up with a set of questions such as this one:

What would you tell someone who has recently been diagnosed with your disabilities or disabilities that you are familiar with?

I will answer that one in one week’s time.