Lucky Number One Hundred

It’s Monday and this is usually the day of the week where I post an answer for the Redefining Disability Awareness Challenge, but I must admit that I am not feeling up to much today.

A lot can happen in one week’s time,

But Trust Me On The Sunscreen.

I have come down with another sore throat. I’d originally hoped I would get through with the colds I had over the winter, but here is my first one of spring. Hope this one is only a minor nuisance.

😦

Instead of my usual Memoir Monday post, I will simply announce my place in this past Friday’s March 20th 1000 Voices Speak For Compassion edition:

Bystander

I included a link to my post and below I include one to the spot where you can find all the Building From Bullying posts, if you want to read any others.

#1000Speak Link-Up: Building From Bullying

I hope this movement isn’t losing steam already, but even if it is I believe even a little bit of kindness and compassion can go along way.

It seems the next big thing in the blogging world is the A to Z Challenge in April.

WHAT IS BLOGGING FROM A TO Z?

I recently heard about this one and I thought about taking part, only for a second, before common sense returned: perhaps next year.

I already have enough on my plate, so much that I am letting this blogging thing take over my entire life practically.

Okay, that’s a tad over-dramatic perhaps, because I really do enjoy it.

🙂

I have a place where I can go to write about all the things that are important to me. I feel, even for a few moments, that I am doing something worthwhile, even if I can’t do all I would like.

I just need to keep things in perspective, if I can, and try to maintain a balance in my life.

This blogging universe, I am learning, is really quite a small one. It’s a bit, I’ve noticed, like school.

It’s like the playground, I suppose you could say. It would make a good metaphor, especially for the topic of bullying I’ve just mentioned.

It’s not a bad thing. There seems to be a lot of support, from what I’ve seen and experienced so far. I haven’t witnessed a lot of bullying or judgment, but then again I didn’t see that constantly when in school either, but it did exist.

I just see a lot of the same bloggers, on any particular blog I might click on. I end up feeling a bit like I always did in school, a part of it, yet not really. It was like I was on the outskirts, looking in. I just keep doing it for my own reasons, doing what feels right for me, and that’s all I can ask for.

I continue to write about what matters to me, what my heart tells me to write.

I should be back again for my usual Monday post next week, with hopefully a few more in between, if I don’t let all this technology trouble get me down in the meantime.

Great week to all of you.

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.

Special Magnificence

It’s the start of a new week once more and once again, on this Memoir Monday, I participate in:

The Redefining Disability Awareness Challenge.

Last week I answered Part A of this question:

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

And

HEre, was my answer.

And Now, in Week Four, Part B: My mother speaks to the following:

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

A: Disability is such a broad term, it can be physical, developmental, very minor in it’s effects or all encompassing.

When you’ve had little experience with someone with disabilities, you often only see what someone is unable to do. The longer you know or more people you know with disabilities, you see them first as the person that they are and don’t even see their disability.

Everyone does their best to cope and deal with their own disability.
One of the hardest parts is when you are closely related, feeling helpless to fix or make it all better for the people you love.

Thank you to my mother and father for their sincere and heartfelt answers to the questions I have asked them to answer these last few weeks.

Next week, together, we answer the following question:

What have your experiences been with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

***

“The Bagginses had lived in the neighbourhood of the hill for time out of mind, and people considered them very respectable, not only because most of them were rich, but also because they never had any adventures or did anything unexpected. This is a story of how a Baggins had an adventure and found himself doing and saying things altogether unexpected.”

The above quote is from J.R.R. Tolkien, on this the eve of the first day of autumn and Hobbit Day.

This, in Middle-Earth, is when the celebrations take place: The Big Birthday.

This, around the world, is the start of the autumn season and Frodo, Bilbo, and Tolkien are celebrated by fans everywhere.
I love this particular season, feeling a shift and a change.

September 22nd is a big day for Frodo and Bilbo in those books and for me, I feel it too.

This week and day were first recognized and celebrated back in 1978 and since then parties have been thrown, food consumed for the occasion, and Middle-Earth literature and films have been screened. Both Tolkien and his son Christopher (just like Bilbo and his nephew Frodo) are celebrated all week long.

In past years my favourite holiday was always Christmas, but this year in particular I am looking forward to the theme of harvest, the apples and the pumpkins, and the bright colours of the leaves and the cool and crisp fall air.

It was the start of a new journey for both Bilbo and Frodo. Sure, the journey was just beginning and their were many cold, dark, and difficult days to come still.

I know winter naturally follows fall, but these autumn months are just the break from the crazy days of summer that I have been waiting for. Those two loveable creatures of my favourite stories in literature give me so much joy.

“Today is a day of special magnificence!”

Happy Hobbit Day to you all.

Literally

For this week’s instalment of

The Redefining Disability Awareness Challenge

I thought it might be helpful to ask the next question to the two people in my life who could best answer it.

These two were, if you believe in that sort of thing, meant to be mine and my brother’s parents. Whether you call it God or fate or whatever, I believe it to be true. They had no previous experience with children with “special needs” when I was born and they had no choice but to dive into the world of specialists and specialty teachers and programs, to give me the best possible chance at a happy and successful life.

As if that weren’t enough. They didn’t just do this at home. They go out into the world and make a difference in people’s lives every single day. Here is more on how they care.

Week Two: Part B
(Part A can be found here

Awareness.

Q: Do you have loved ones who live with disabilities? Do you work with people who have disabilities?

A: (My mother was a stay-at-home mother while I was growing up. It wasn’t easy for her to jump into the working world after so many years removed, but she stepped up to the plate and used her skills wisely. She does a job each day that not a lot of people could or would be willing to do. She makes lives better and she treats her clients like human beings, doing all she can to bring light and fun into their lives.)

I work in a group home with individuals with both physical and developmental disabilities. Our job is to give them a home and help them contribute. Whatever each person is able to do, look after each of them and help meet whatever their special needs may be. 

For example: food and Meals.
Some individuals can help shop for groceries, one can do a great job of barbecuing, some can make their own breakfast, one needs assistance to steady their hand in order to get a spoon of food to their mouth, and one needs to be spoon fed every bite. Everyone is unique and you assist each special need and even more important is to promote each ability.

(My father worked in a retail setting for over twenty years, until he grew weary of the long hours and high demands and went in search of more meaningful work. He did something I will forever be in awe of: he walked away from a highly stressful situation, left a steady paycheque, and regained his sanity and his self through the unknown of a future career he did not yet know he would find. This leap of faith brought him to the necessary and valuable work he has done for over ten years now.)

I’m the owner and driver of a wheelchair cab. About 20% of my clients have disabilities such as strokes, amputees, MS and the elderly. My service gives these individuals the ability and access to travel  in their community, anywhere that they may need or want to go.
Having had two children with disabilities, this is my way of feeling good about a job that contributes to the special needs of others.

My parents are the two best examples I know. They do what they can, in every aspect of their lives, to help others. They are selfless and kind, generous souls, literally working every day to make the world a better place.

Next week’s two-part question starts with: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not? If you don’t have one, how do you view the concept of disability or the people in your life who have them?

***

Happy International Literacy Day

Rilke wrote:

“You ask whether your verses are any good. you ask me. You have asked others before this. You send them to magazines. you compare them with other poems, and you are upset when certain editors reject your work. Now I beg you to stop that sort of thing. You are looking outside and that is what you should most avoid right now. No one can advise or help you. No one. there is only one thing you should do. Go into yourself. Find out the reason that commands you to write; see whether it has spread its roots into the very depths of your heart; confess to yourself whether you would have to die if you were forbidden to write. this most of all: ask yourself in the most silent hour of your night: must I write? Dig into yourself for a deep answer. And if this answer rings out in assent, if you meet this solemn question with a strong, simple “I must”, then build your life in accordance with this necessity; your whole life must become a sign and witness to this impulse.”

I MUST!!!

As I read this quote, deciding to include it in today’s post, I stopped and looked at the individual words that made up each thought. I felt a wild connection and a fierce excitement about how each little word can come together to create something so powerful and meaningful. I was in awe of the written word and I thanked all of this for enriching my life and making it a better place every day.

I know I am lucky to have it, to have the gift of literacy. Where would I be without it? I would be lost.

So on this day and every other I appreciate the fact that I have this most precious entity and I realize that not all my fellow humans on this planet are as lucky as I am. For all the girls and young women around the world who are being denied the chance of literacy I write this. For every child who can not go to school for whatever reason, I speak up here today.

On this important day I owe everything I have to literacy. Go

Here.

I can never thank those enough who brought the gift of literacy into my life.

What does International Literacy Day and literacy in general mean to you? How has it impacted your own life?