Serenity and the Frail Petunia

Dear Reader:

I am blind and getting more blind by the decade. It’s not all I am, not by a long shot, but it’s a core part of me that I wrestle with every day, some days more in a nuisance way and some days it brings me down.

I wrestle with how to balance that part of me with the rest, in my interactions with people: if I bring it up too much, I’m using it as a crutch; if I pretend it doesn’t have an influence, I won’t ever speak up for what I need or get those needs met in any way necessary.

Different blindness organizations have differing views, but as I grew and went along, I felt I had to get involved in something I felt represented me, without letting the activism and hard work of advocacy take over my life entirely either.

It’s hard enough to focus on ourselves, let alone having to work or worry on or about the issues someone else might be living with. Some prefer to get things squared away in their own lives and leave it at that.

I am like most in Canada and those living in North America in 2019 – I only recently heard of
the Canadian Federation of the Blind (CFB)
recently, but I found people and projects there that did make me feel like I belonged and had something worthwhile to contribute.

Just a few of the things we are constantly fighting and working to improve:

The guide dog discrimination and misinformation issue just won’t go away. In fact, depending on who you happen to ask, it’s grown worse in recent years.

People get refused service from businesses and things like Lyft or by Uber drivers. Sometimes a cab will see the dog and then pull away, intending to pretend that they were never there, leaving the person waiting in vane for a ride.

Blind people are one of those groups of people who can’t simply get behind the wheel of a vehicle and get somewhere themselves. Public transportation and rides from helpful friends or family are our best bet if we want to leave our homes. PSST…we do.

Those who say: “no guide dog allowed” claim it’s an allergy issue or a cultural one. These do give the issue a two-sides-to-every-story feel for many people, but it matters to those who depend on their guide dog to give them back their independence.

Also, I am trying to get my local library to offer me as much access to literature as possible. People unable to read print have only about ten percent of the access to the written word and books as those who can see. A library should want to do all it can to get me access to books, as I can’t pick up any book on their shelves and read at will.

Being in my local library now makes me sad and resentful. I can deal with the fact that I’ll never see print again, like when I was a child reading large print, but I go to my library twice a month (to attend a local writing group) and I am surrounded by some of the things I love most in the world, yet they are just out of reach.

There are places to get more access to books:
National Network For Equitable Library Service
and
Centre for Equitable Library Access,
but they are not just duplicates of each other. If one has even one more book than the other, that the other does not, don’t I deserve access to both?

Libraries in Canada have always kind of passed the buck of literacy for the blind onto the
Canadian National Institute for the Blind (CNIB),
but (in my opinion) they should care for every client and want to offer inclusivity and a welcoming atmosphere for all.

Instead, I am disregarded and left not wanting to even step foot into the building most times, even to see writer friends I love and to share stories with them, because the library has become a bittersweet and even painful place.

And finally, there’s this…

****

The antidotes to job-seeker deceptions presented here reduce but don’t eliminate employers’ risk of getting snookered. For example, I’ve had clients with a disability who withheld that information, knowing there now are laws that limit the interviewer’s ability to ask about them. And then as soon as hired, they disclose the disability because now they’re protected by the Americans with Disabilities Act.

****

Go ahead and read the
full article (for full context),
but many do not and so I’ve decided to paste in the above paragraph separately.

I really don’t want to give this article more views, but I also think people should be aware of where stigma like this persists from. I happen to believe the written word is a powerful thing.

I am not into shaming or attacking anyone/not without cause or reason, but I do believe we should do more calling people out on something if it is hurting a whole group of people.

I believe this writer disguised this attack by inserting this as one of his final points of proof of his main article’s point of view.

Most people won’t see this because attentions are short in 2019 and reading to the end of an article is often not practical for those on the go and with mile long to-do lists. I probably shouldn’t have even made this blog post this long and left this part for the end. This is not an accusation, as I understand people’s time is precious. I just wish people were more thoughtful about things )like this writer) and I hope someone does get this far in my post.

I believe, in life, we should all pick our own battles, but I am getting tired of visible ablism and the perpetuation of stigma.

The reason I wanted to start a support and resource group, which we’ve called our Employment Mastermind Group or EMG, and through some Canadian Federation of the Blind members and others, we are doing it, is because of writers such as Nemko.

We can argue all day about the real unemployment rate for people with disabilities and who are blind, but either way it’s much too high still.

Of course, the ways in which we’re told we can reach people and change minds are things like social media, Twitter private messaging, but I don’t really think a tweet sent from me to him will get me anywhere. I came here, though I write here less often than I used to, because I have a place to speak openly and honestly about something that hurts, as much as I try not to take it to heart.

Do guys like this truly think he’s helping anyone, to warn unsuspecting employers? What was the editor of this article thinking, putting the Psychology Today name on this?

I may have thought, as a freelance writer, of writing for this publication at one time, but I don’t think I want to now. (One to cross of the list.)

The question of whether to disclose disability on a resume or application for a job is often asked in the blindness community. People only want to find meaningful employment like anybody else, to feel useful and for independence and self sufficiency.

We are honestly afraid we’ll be weeded out before we’re given a chance to prove our skills. We’re not saying we deserve special treatment, given a job even if we aren’t up to it, but employers are often afraid to hire someone with a disability because they think it’s not going to be worth their time/money/energies, that it will be too much of a hassle or a risk to them because not everyone understands that blind people aren’t helpless and don’t need to be watched over every minute.

Who would admit they do this? Doesn’t mean it isn’t exactly what some employers (not all) would do, hoping not to be caught doing it.

It’s like when you want a person to like you, on a date, so you hold back on something you think it may be too soon to share. You do have to take the risk sooner or later, but you have no idea how they will take it when they find out. This is where it can get tricky. Maybe…you think…if they get to know you a bit first, then when you do finally bring it up, you’ll have left such a wonderful impression that all will work itself out. Sometimes it does and sometimes it doesn’t.

I happen to think being upfront, as soon as possible, is best (in all types of relationships/be they personal or professional), but I know it’s a nerve racking thing when you think you’d be good at a certain position and you don’t wish to be pitied for the rest of your life, wishing to carry your weight and support yourself, but fearing the injustices of the real world.

This writer is including people with disabilities as “the deceivers” of those poor employers. Aren’t we just so incredibly evil, pulling the wool over innocent eyes and those eyes must be warned that we’re coming?

Maniacal, aren’t we?

Inaccessibility is everywhere you look. I couldn’t and wouldn’t include everything it is here because I would be writing for days. Let’s just say that even the comment section for the article, when I went to share my thoughts, was no simple thing to tackle.

So if it sounds as though I’m complaining too much, you’re right because I do get tired of having to bring these things up all the time. Really, I do. I wish I didn’t have to and I could go back to staying quiet and saying nothing, just so I don’t rock the boat, but that doesn’t get us to a better place.

If you are on Twitter and you feel like helping this writer and career coach learn why what he said was so harmful, he can be found @MartyNemko and you can also try @PsychToday.

Thank you for listening/reading/considering.

Signed,

KKHerheadache/Kerry

TToT: Yes, I Really Really Care – Do You? #AccessibleCanadaAct #10Thankful

I care. It’s right there, in my name (Kerry) if you listen carefully.

A lot of wonderful things can happen in twenty-one years time. Right Mya?

Ten Things of Thankful

I’m thankful for a smooth appointment to mark my twenty-one years.

My creatinine was up over 80 last time, but it’s right back down to 76 and I can’t argue with that.

My potassium seems to be up some, but we’re retesting, to be sure. Strange, but it could be worse.

I’m thankful for once a year.

I was told I can cut back, from twice-a-year visits to the kidney clinic, to now once only, with the other being for only checking my blood.

What is better, after more than twenty years, is that my brother was told the same thing and he’s only now coming up to five years with his kidney, second one for him.

I’m thankful for a wonderful local resource for women in my community.

Women’s Employment Resource Centre (WERC)

From my first call to inquire, to my first intake visit and subsequent ones, I’ve felt welcomed and have been offered wonderful assistance. I am glad I went for it.

I’m thankful for help with my first resume and cover letter, from an expert on both.

I feel, I look younger than I am, and I feel as if I am at least ten years behind in other ways too.

Since I’d taken a career preparation class, back in high school, I’d been afraid to take steps to write a resume for myself. I was in my twenties, depressed, and feeling ashamed that I hadn’t done anything to warrant placement on a resume.

I heard about a particular internship and it required a resume, so I went for it. I found some excellent help to create one. I was intimidated by the visual aspects, structure and formatting and things.

I had help, lots of concentrated help, to bring one into existence. I am so pleased with the results.

For months and months, I’ve built more of a list of publications, but interacting with editors over email was all that was required, until now.

I’m thankful for an eye doctor I can trust to give me his honest opinion.

His soft, steady voice has always calmed me, simply by hearing it.

He saw nothing new, both on the tests (ERG) and from looking in my eyes with his brightest of bright lights.

This is a good thing, of course, but the genetic eye condition I have is so rare and the cells are dying out on my retina and it is nearly impossible to spot the slow decline of sight I’m experiencing, leaving me with less and less as the years pass.

Still, even if there are more and more well discovered gene therapies, none are for me at this time. I trust him. I am still scared, but I trust him, and it takes years to show that level of trust.

I’m thankful I heard back from an editor I thought was long gone.

I’ve got contracts now, writer agreements, and so hopefully it’s a go this time.

I’m thankful for progress in Canada.

Minister Duncan introduces the proposed Accessible Canada Act

I am taking steps toward finding work for myself, but things like this take us one step closer to accessibility and equality for things like employment and much more.

I’m thankful for the return of the pease.

I’m thankful for
Lizzi
and
Josie
and the passing of the torch.

I’m thankful for
Kristi of Thankful Me
and her stepping up to host a place for gratitude.

I can See! I can see!

Spring has sprung!

Well, almost nearly.

Even so, I am loving the talk of blooming cherry blossoms, tulips, and just the other night it was another blood moon and short eclipse.

April is daffodil month.

April showers. Bring on the rain.

Another Memoir Monday and edition of,

The Redefining Disability Awareness Challenge

In my post, from one week ago, which I fittingly called:

Social Media,

I introduced the new Facebook page.

Please feel free to join me there, where more will be introduced in the months to come by myself, Rose, and others.

There’s just a lot going on right now, as spring arrives, and always in the world of blogging.

🙂

***

Q: If you could “cure” the disabilities that affect your life, would you?

Why or why not?

A: Do any of you remember the Barqs Rootbeer commercial with the blind man?

Perhaps not. I searched all over YouTube and found every old Barqs commercial but the one I wanted.

😦

Well, the blind man is offered a Barqs and, upon drinking, he proclaims:

“I can see! I can see!”

With this the other guy says:

“Really?”

“No. But it’s got some bite to it though.”

Funny stuff when I saw it, at the time. I quote it now and again, but it raises some interesting questions.

I like to imagine I were the one taking a drink of pop one day and suddenly I am able to see, just like the commercial promised.

😉

I used to answer the above question from this post with a defiant “NO” because I thought that meant I was accepting and proud of my situation and my life.

Does the fact that I have changed my tune on that mean I haven’t accepted anything after all?

I don’t know. All I know is that if I had the chance, suddenly to see, I would be a fool not to take it.

I am not talking about literally, as science stands now.

All the time I read about some new developments in the world of medicine, allowing the blind to see. I usually don’t jump at the chance because it isn’t as the headlines would make it seem.

Most times it’s speaking about some contraption or device, worn on the head, wired up and with a battery pack. It’s some pair of space-aged glasses that send some sort of signals and produce outlines or shapes, giving the wearer some kind of ability to sense objects in front of them.

This is how I see now. Anything more than that gets more complicated.

There is no pill to take and no surgery in the world can bring back the sight I used to have, let alone the sight I have never had before.

If, in some futuristic or magical moment, true and full vision were possible I would be first in line.

I won’t stand here anymore and say I am happy with my life and don’t need to be fixed or cured. I wouldn’t get in my own way like that.

If I could see things would…well, they would still be complicated as life often is, but they would be easier. It would make things a whole lot easier on myself and on others.

I could see colours again. I could see the expressions on my family’s faces.

I could drive. I could write. I could walk unassisted and unaided.

It would be easier to find employment and the job prospects would grow exponentially.

I am not too proud to say I could use the help.

Wanting that and wanting more for my life than I currently have does not mean I am not happy right now.

Being blind has taught me to appreciate things and to not take life for granted. I might not have that same perspective if it weren’t for blindness, not that I would be a bad person had I never experienced all that.

I am glad I did not have parents who couldn’t accept my disability and who went on a determined search for some magic cure. Some parents did or do just that.

I was taught to work with what I’ve got and to make the best of it. I’ve had a mostly happy life. I am lucky.

IF I could see though, I would. I would take that huge gift, if science or some other entity offered it. I would experience things I have only dreamed of.

I would take it and rush to stand in a bookstore or library, surrounded by my beloved books, of which I could finally pick up and read.

The world would look strange to me and I can’t quite imagine it, as I write this. What kind of world would that be? What would it look like to me?

I recommend a movie now, all about a man’s journey to almost having his sight back.

At First Sight: starring Val Kilmer and Mira Sorvino.

I saw it in the theatre in 1999, it struck a cord, and I have wondered seriously on the question ever since.

It’s about finding love and what two people do to stay together and to make it work.

She wants only the best for him and that, she thinks, includes helping him get his sight back.

Was it his blindness that got in the way of their happiness or the fact that she couldn’t accept him for him?

This is a question, in a way, for another time. It only demonstrates how complex it really is, to suddenly get one’s sight back.

I answer this question with a yes, while others may answer differently, but in the meantime I like commercials that can make a joke out of something so hard to fathom for anyone who has been blind all her life like I have.

***

Would you choose to get rid of something about yourself, anything, if you had that choice?

Why or why not?

Spread the word.

The Redefining Disability Awareness Challenge: Redefining Disability, on Facebook.

Like, like like.

Share, share, share.

And until next week:

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

https://www.youtube.com/watch?v=oIY0AcBZm28

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.

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

National Disability Employment Awareness Month

Last week I spoke on a strictly medical point-of-view with

Diagnosis and Treatment.

For this week’s post I thought I would highlight the need for integration and awareness, for a cause so important to me: October is National Disability Employment Awareness Month in Canada.

Q: Do you think that its more important to emphasize medical treatment, life skills, community integration, or a combination of these things?

***

A: I am a big fan of not choosing one thing. In this case, just one won’t cut it.

Of course physical health is important. Any medical treatment that is required should not be ignored, whether through denial or fear.

In my case, eye doctors were vital when my remaining vision was in question and in danger.

Yet, there is so much more to the picture than eye health. Life skills and community integration are things that can not be ignored, or suffering and isolation follow.

I can’t express enough how vital my parents were in these elements. Once the medical condition of blindness was established it was time to get on with the business of living.

I do for myself as much as I can and those skills were taught to me as a child, as they were for any other.

Community integration brings me back to the start of this post.

Of course nothing is yet easy and simple. It is important to feel like you are a part of something bigger, community is that something. I know a lot of the work of integrating people with disabilities is still needed.

Nowhere is this as clear as in employment. We are not yet at a place where the numbers of people with disabilities, especially visual impairment, are high, integrated into the community and working alongside.

Integration can be a big and daunting word, for everyone. Both sides need to be able to communicate and play their part, if there is to be any real success. There needs to be an effort put forth by all involved.

My blindness doesn’t have to impede everything. There are certain jobs I could perform very well, if given the chance. This is really only possible because I was once taught many life skills others take for granted and don’t really think about.

The integration is then required to complete the process.

Medical treatment, life skills, and community integration are accomplished, for people with disabilities, in steps, one building on the other until the person is as well-off and well-adjusted as possible.

***

For more information on National Disability Employment Awareness Month, go

Here.

And next week on the

Redefining Disability Awareness Challenge,

What are some significant moments/events in your life that connect to disability?

I am betting I will have a lot to say for that one.

🙂

Going Blue For Equality

Last week it was go purple for Epilepsy and this week it’s blue for Autism. April 2nd is World Autism Awareness Day and I just watched a very interesting documentary on TV Ontario about the challenges people with Autism Spectrum Disorders face, specifically when it comes to employment. I wanted to watch this particular doc because I felt a certain empathy and understanding with this topic and with the people involved.
The spectrum for conditions such as Autism and Asperger Syndrome is wide and varied. It includes many people at many different levels of function and ability. I would never presume to say I know what people with diagnosed Autism and other disorders like it and their families go through every day, but I can relate in my own way.
A lot of the characteristics of Autism and other disorders like it can be similar to some that go along with blindness. People with autism are most often introverted and in their own little worlds, isolating themselves from the world around them, unable to interact socially and to cope with the rest of society.
When you are born without one of your key senses, sight, a lot of those same things can happen. These things make it difficult to grow up in a world of the sighted. I was lucky to have been raised by two amazing parents who did everything they could to teach my brother and I how to function in social situations and with others. They put us in school in our neighbourhood with our peers. That environment was crucial in our development. I can’t say my brother and I aren’t prone to want to remain in our own heads some of the time and in certain circumstances. It’s hard to know whether that’s due to blindness or not. HE is a musician and I a writer; both these things are known for a lot of time spent in isolation and alone. We can both be shy and were at risk of becoming much more withdrawn if it weren’t for the stellar upbringing we received. Not all are so lucky, for a number of reasons.
The documentary focused on the problems people with autism have finding meaningful employment opportunities. This is where I can relate.
Of course it hasn’t been the norm in the past for people with disabilities, mental or physical to work like the rest of the world. It just wasn’t done. The number of people with disabilities not working hovers somewhere around 80% and I feel sad when I hear that figure.
People with disabilities, blindness and autism both, have generally been known to remain separate from the working world because we weren’t thought to be able to keep up and contribute in any real way. This is hopefully beginning to change.
In the documentary things were discussed such as mentors and other training programs specifically set up to accommodate those with special needs. Certain hiring practises such as the interview process can be difficult for those with autism, but each person has their own unique gifts, strengths, and abilities.
People with autism are often masters of detail. Some do well at certain repetitive tasks and jobs. One example is of a gentleman who loved to shred paper. HE could sit for hours and do this and so his family found a way to work with that ability. These people can be useful if given the proper chances.
Another case is of the guy who has been in the news lately, who suffers from autism, but has opened his own restaurant, including lots of hugs. A lot of people on the autism spectrum don’t like to be touched, but he does and he found a way to incorporate that into a warm and welcoming small restaurant atmosphere.
Of course these are only a few examples, shredding paper and food service, but when special needs are taken into account, a person with a disability in the workplace becomes less frightening and intimidating to all involved. Each and every disability is different though; this can not be emphasized clearly enough. The stereotype is that they are all the same in the end and the people with them are all at the same exact ability level.
This term “special needs” is all that’s needed to scare employers and companies off from even trying. What is in it for them after all?
I think a lot on this subject and wonder what I can do to have a part in making things better for people, like myself, with disabilities to find meaningful employment. I don’t believe in sitting back and waiting for employers and companies to make all the effort. We with autism or blindness or whatever it may be, we need to make ourselves available and productive and show them what we have to offer. It has always been a company’s job to make a profit and do business. They shouldn’t spend all their time making exceptions. Most times companies don’t know what they need to do and they need to be given the correct tools.
There are a lot of things people with autism or the visually impaired can’t do and a lot of other things we can, but we still deserve to feel like we are a part of the communities we inhabit. We can’t just sit back quietly, secretly and hide behind closed doors anymore. It does nobody any good. We as a society need to require more of all of us.
The colour blue is the colour of World Autism Awareness Day. Blue is often the word used for feeling depressed. Not feeling like one is contributing can certainly cause feelings of depression. I prefer to look at it as blue as a bright blue sky and the bright future it is possible to have for people with all sorts of disabilities and the workplaces they are just as deserving to be a part of and of whom could benefit enormously from what we have to offer.
“It is a call to action. I urge all concerned to take part in fostering progress by supporting education programs, employment opportunities, and other measures that help realize our shared vision of a more inclusive world,” UN Secretary-General Ban Ki-moon, World Autism Awareness Day, 2014
***
One of the roadblocks in finding real employment is technology. I just had a guest post to share on this very thing on a friend’s blog. You can read it here.
changeitupediting.com
Reading Challenges of a Visually Impaired Writer in the Digital World