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There’s BOUND to Be One, JusJoJan

I languish in the calm here. I try to convince myself it won’t happen here, or even anywhere close to where here is.

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Canada is my peaceful place, but that isn’t the case for so many, I feel even the circumstances here are biding their time before something shifts and cannot be put back right.

Just Jot It January, #JusJoJan

Governments and corporations like the money and the power, as humans tend to do, when presented with either. It is classic stories that make this clear for me, but shut the book and I am back in cold, hard reality where there is no cover to close.

How long people like myself stay mostly ignorant before blowing it all up in protest is the question on my mind sometimes.

It’s protests in the streets, but often even the biggest of those fizzles out. Or maybe not really. What will Iran do, I wonder.

It’s a rebellion I read about in history class, in Canada’s not so distant past. Those seem like heroic tales from long ago. I stay out of such things. I try to keep away.

The ridiculousness of politics baffles my mind most days. Countries are just trying to function, their citizens only wishing to live a nice life, and all this thought/talk of rebellion and revolutions is simply stirring things up.

My mind gets carried away often and I have to struggle to get it back under control, to where I need to listen to something like the rushing and roaring of the waves, the only thing that puts it all in perspective and calms my racing thoughts.

Fears I have of such discourse as what’s happening in Canada’s neighbouring country ending up no other place than
open revolt of some kind
keep me unable to let it go. It’s ongoing.

As I picture what history books one hundred years from now might look like, I am starting to see that writing in that book in my mind.

I’m being silly, right? Tell me that I’m just being overdramatic. Go for it.

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A Stranger Returning Home, #MLKDay #JamesBaldwin #JusJoJan

Just. Juice. Prejudice.

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These are three things that come to mind when I think of the word
“justice”
because they look similar in my mind, not because they have anything really to do with the word itself.

Just Jot It January, #JusJoJan

Okay, well, maybe justice and prejudice are related, but really I say this now because I am delaying the moment when I have to write about serious things.

Today hasn’t shaped up the way I was expecting it would. I was trying to figure out how to write something about Martin Luther King Jr. and then Dolores O’Riordan died.

Well, that’s not really a topic of justice. It only adds to my blue mood on Blue Monday as it stands.

I relate to the fight for racial justice, in that I can take my disability and think how discrimination manifests. Still, the subject is a sensitive one, as it should be.

It’s like the reconciliation discussion I learn about, with Indigenous Peoples, daily, here in Canada and in other places, all over the world. I am just sad, sad we haven’t come far enough and in some cases, have slid backwards with time.

This is the type of writing that evolves and changes throughout a day. I started this (mid month Monday) thinking about how to address MLK Day.

I’ve spent most of today lamenting the death of a one-of-a-kind voice in music, and I’m ending it by watching a documentary I have known about for months about writer James Baldwin, being shown on PBS.

I haven’t read his stuff and I know very little about him to be honest. I do know that these issues of rights, of where privilege lies, and on how to fight oppression and for justice, are bound to be found throughout Baldwin’s doc, in his own words, years before I was born.

He watched the young girl try to attend school and be spit on, chiding himself for not being there to help her.

Disgust and anger. How to move past this and into making it all better?

Baldwin didn’t miss America while he was in Paris. He didn’t miss it, but he did miss his family and his culture.

MLK knew he wasn’t likely to live long to see any sort of change.

It is painful for James to return, though he is home again.

James Baldwin said: The line between a witness and an actor is a fine one.

This feels so intensely true right now.

So poignant all these years later.

All about class and culture and race and so many other classifications I cannot seem to parse.

James did not stay, as witness. He was free “to write the story and get it out.”

He saw Martin and Malcolm X both go and he wrote about it.

Malcolm, Martin, martyrs both. Baldwin was the writer.

He writes: I Am Not Your Negro

How to reconcile any of this?

And so goes the clicking of the typewriter’s keys.

If you get the chance, watch I Am Not Your Negro.

Things sure have changed, since last century, but we writers still will write.

The story of America,” Baldwin said, “is not a pretty story.” “Aimless hostility.”

“This is not the land of the free.”

—James Baldwin

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Bumps Under Fingers #WorldBrailleDay #JusJoJan

January 4th is Louis Braille’s birthday, French inventor of the braille code.

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I think two of the best qualities any person can have are passion and compassion. I believe we’re all passionate about something.

Just Jot It January, #JusJoJan

I am passionate about braille literacy, as an extension of literacy as a whole.

Braille is hard to learn for many people who lose their vision later in life. I’ve known braille since I started to slowly learn it in my first five-seven years.

I am practically allergic to math and numbers. I am deeply passionate about words and braille.

In this world of technology, there is less and less push for blind people today to need to learn braille at all. That, to me, would be like never learning to read. Though many prefer to listen to the talking programs on computers and phones, I still wouldn’t trade that for the feeling of those bumps beneath my fingertips.

Thank you, Louis Braille, for what you did so long ago.

This first-Thursday-of-the-month JusJoJan post comes from
Rosemary Carlson, Writer
with her prompt word-of-the-day: passionate.

What is it you’re passionate about?

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A Reckoning: 2018 and the next 100 years #Disability #Equality

Today I am giving a friend a platform. Since he no longer has a blog, and I do, I am sharing this here.

***

Today, I’m so angry, I can’t concentrate on my labs. This morning when I checked my email here is what I read:

“With sight loss, everything you have ever known becomes unfamiliar. Your favourite T.V. chair, your reading nook, your computer desk: all become symbols of the quality of life you feel vision loss has robbed you of.

When you donate to CNIB, you help give that quality of life back. You help people learn new ways to enjoy their favourite movie. To read a book. To connect with loved ones.

Friend, your donation today can give families back their life.”

This has been eating away at me for a while now, but I am finally sick of it and I have to say something.

My friends, everything in the quote above is an absolute lie. If you were to dress up as a beggar on weekends and hit people up for money even though you have a good job, it would be no different from what is happening here.

“With sight loss, everything you have ever known becomes unfamiliar.”

Wrong! In fact, just the opposite is usually true. In my experience serving hundreds of people over the years, I have found that familiar things take on special significance and offer tremendous comfort to the newly blind.

This email says that newly blind people resent familiar things, that those become unfamiliar, mocking, threatening, icons of a supposed life we have lost. Get that monkey off your heart strings for a minute and try and think about this logically.

If you undergo a major life change, no matter what that is, wouldn’t you rather be in your familiar home surrounded by your possessions?

This email says that sight robs people of their life, but that isn’t true at all.

I have seen this countless times for myself. A newly blind person is not going to deny themselves their morning coffee just because they went blind. No, they are going to fiddle and futs and do what comes naturally until they get their coffee. They may not be confident of making coffee at a family member’s house, but they aren’t going to go without at home. In fact, something as simple as fixing coffee for a guest can be an outstanding source of pride and self-confidence for someone. There are always variations in situations, experiences, and coping mechanisms, but generally speaking, people take pride and comfort from being surrounded by familiar things.

Losing sight requires a person to develop new skills and use new tools, but it doesn’t rob most people of their life.

Only a very small percentage of us actually commit suicide because of losing sight. Many of us are turned away from daily activities because of the fears, low expectations and preferences of the sighted.

“don’t pour that coffee! It’s hot! you’ll burn yourself.”

We can damage some one’s fragile outlook by so denigrating something they take pride in. The newly blind person pours coffee for himself every day when the sighted person isn’t there, but it’s too much for the sighted person to watch. Thus, something the blind person worked hard to accomplish and may have been looking forward to sharing with the sighted person is diminished because of the low expectation of the sighted person.

Low expectations are the damaging factor here, not blindness.

Promotions like this one add insult to injury by demeaning the actual bereavement process people go through because of something like vision loss. As much as people learn, adapt, and go on to lead full lives, being blind in a world designed by and for the sighted is not without it’s sense of loss, of being singled out in a negative way.

We get through it, not because of money, but because of family and peer support, and the tenacity of the human spirit.

Playing on the natural grieving process of the newly blind to tragify us and scare you into giving money is an insult.

According to
Charity Intelligence
there are an estimated 500,000 blind Canadians, and CNIB provides approximately 560,000 hours of service delivery across canada each year. You can do the math in your head.

That’s just over one service hour per blind Canadian.

The annual budget of CNIB is just under $30,000,000 per year

– 54 cents of every dollar goes to programs.

The top ten earners at CNIB earn approximately $2,000,000 per year collectively, with the president earning $350,000 per year.

I believe this aspect of the pay structure is not reflective of the income experience of most blind Canadians, and I choose to be insulted that this one person makes so much money from the blind while the actual state of the blind continues to be abysmal and expectations continue to be oppressively low.

Can we do better? I think we can.

Is CNIB the answer? Maybe at one time they provided real value, but in my view that value is at an end.

How can the blind achieve dignity, respect, inclusion, equality, and increased quality of life if people who haven’t experienced blindness believe life ends with blindness?

If blindness is an irrevocable, life shattering tragedy, why will a human resources person want to hire someone who is blind?

How can we convince people to design all things inclusively, …that including every one in design benefits every one?

How can we convince people to rent us places to live, include us in social orders other than those specifically for the blind, or let us raise our own children in freedom?

If blind people are viewed as perpetually broken, how will we ever have our ideas, accomplishments, and opinions respected?

How can we lie to people and beg for money and expect to teach those same people that blindness is not hopeless, …that blind people are successful in their own right and deserve equal participation in society?

Please be angry. It is time. As long as we channel that anger properly, it can be a source of passion and determination blind people can use to build a future for ourselves where-in we are included as equals, not tagging along as third class citizens.

It would mean more to me as a blind person, if you would take the money you would have donated to CNIB, buy yourself some beer and pizza, and spend an hour or two a month coming to CFB meetings where we can work together to find sustainable ways of delivering needed services that don’t require us to lie, grovle, and debase ourselves to get the crumbs left over from sighted executives.

The blind community is not made up of deficient and damaged people. We have creators, innovators, educators, technology, legal, medical, and financial professionals, and thousands of hard working talented people who can be successful in their own right with real support, tools, reduced societal barriers, and sustainable services.

The blind community has society, culture, political agendas, philosophies, all intertwined with, having things in common with, connected to but not completely the same as those of the sighted or any other social political group.

Let’s build our own movement large enough to provide a valid alternative the state we have now that sells us at a premium, yet far short of our true abilities.

***

Here is my take!

I was born with vision loss (blind) and so was my brother. We grew up with the CNIB who sent us braille/audio books and where we learned how to properly use a white cane to get around safely.

The CNIB is the organization most people would name if asked, have heard of here in Canada, mostly because it has been around the longest. It is celebrating its 100th birthday next year, but things aren’t the same as they were back in 1918 and that can reflect how things are, here and now in this moment.

I don’t want to just be angry either, to demand without being willing to listen, but I do think there has been a reckoning.

We are all individuals of course and I don’t dare speak for all people with sight loss by any measure. This is only one woman’s opinion, mine, and my friend’s reaction to the status quo.

From what I’ve seen and experienced lately though, the disability community, as a whole, are declaring the intention for more equality and rights. I know some of it rests on our shoulders, and that’s why I believe it is time I used my abilities and talents to make life better for the next one hundred years and beyond.

I do wonder who wrote that bit for the newsletter though.

There are only a few weeks left in 2017, but this next year of 2018 is when I plan on becoming more active, both with the American Foundation and Canadian Federation of the Blind.

American Foundation for the Blind

We need to make more changes and to do that, we need to use our collective voice.

Canadian Federation of the Blind

Signed,

Chair and Secretary of the newly formed Ontario chapter of the CFB

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Lay Down Your Weapons #RemembranceDay #SoCS

I am trying to write about war.

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On this November 11th, I try to put myself in the place of, say, my grandmother. She lived through World War II and yet I feel like I never even scratched the surface with her. She spoke of that time in her life, more than most, but yet not nearly enough.

I am trying to get down the words, at least a beginning to what could become a novel some day. November is not only Remembrance Day, but it is also National Novel Writing Month and, at this rate, I am not likely to make the fifty thousand words that is the ultimate goal.

I have a near stroke when I think of the setting I want my story to have. I worried that this piece of writing required too much research. NaNoWriMo isn’t supposed to be about doing research. That comes later. Just write.

In a way though, I feel I’ve kind of being doing my own form of research, for many years. I’ve been fascinated by history for as long as I can remember, most especially World War I and II and the 20th century. I’ve watched documentaries and read up on lived accounts of those years. Still, as much of an empath as I feel I am, it is hard to put myself in that place.

How would it feel to be living during World War I or World War II anyway?

I listen to true and up close accounts of soldiers, in the trenches, between 1914 and 1918 and the rats and the mud and the stench of death all around you.

I’ve listened hard to personal accounts in interviews, Jews and other victims of the carnage. I am writing a story about a woman, her mother, and trying to raise three young children/grandchildren during such days. I am trying to put myself in their shoes. That seems, though I am a human too, to be a difficult task, a goal, one I am fighting hard to reach.

I love my country, am happy to be Canadian, but I am no patriot. I wish political parties and affiliations didn’t exist. On a day like November 11th, I don’t glorify war, just like I don’t glorify it any other day of the year. My goal, in learning about it and writing about it, is to try and make it not repeat itself, like I have that power.

All the talk of bravery gets to me. Of course, it would be scary to be caught in a war, but to make the decision to go and fight in one is different altogether.

I feel like I am being disrespectful. I know it’s a sacrifice to risk losing a leg, an arm, or one’s life to war. I speak the truth of it, but what it is is ugly and awful and, I believe, unnecessary.

I heard a song on the radio earlier today, one that very nearly brought me to tears, about how we’re all one, all family, every one of us. We are from different countries, continents, cultures, and races certainly. Some say this makes us different in ways that cannot be altered. Others sing those songs of coming together as one, in humanity.

Stream of Consciousness Saturday, #SoCS (Remembrance Day Edition)

I wish walls were never built and lines never crossed in anger. I am not in control of most of this. Losing limbs seems, to some, to be a possible price to pay for freedom and democracy. I just want to write about war. I don’t want to see any more. People say, when it comes to us imperfect and often boastful humans, that will never be the case.

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TToT: Words Don’t Make The Rain Go – And So Forth, #10Thankful

“No dress rehearsal. This is our life.”

Gord Downie, The Tragically Hip

Tragically Hip frontman Gord Downie dead at 53 – Toronto Star

A man who was never widely known outside of Canada for his musical abilities is now gone. Maybe, though, he was meant never to have worldwide fame, but instead to be Canada’s musician and to do what he did, to speak powerfully about how we’ve treated Indigenous people in this country, Indigenous youth for more than a century.

Ten Things of Thankful

I am thankful Canada has a leader who can show emotion.

A friend died, a fellow Canadian, and I know people still thought it silly that Justin Trudeau became emotional.

Why not?

He is human, isn’t afraid or so unfeeling and dead inside as to let his emotions out, and I will take that over other options, in other countries, right now and any day.

I am thankful for a comforting and hopeful yet bittersweet mid week medical appointment.

I felt a true disappointment when I realized she was coming to the end of what she, herself, could do to help me.

She is one of the best physicians I’ve ever seen and that is not always so easy to find. She did her best for me and I could sense she felt truly bad that I wasn’t feeling better from any of her treatment ideas. Again, hard to find, feel from some doctors.

So, she is always open to seeing me, if I ever need something, but has given me suggestions for what to try next and where to go.

I really did feel sad when I left her office this time. I guess that is a sign I’ve seen too many doctors in my life.

I am thankful for the ability to go into my local bank and deposit a cheque I earned all by myself, into my account.

This shouldn’t be such a big deal for someone my age, but it is.

That’s just the honest to God truth of it. More where that came from, but my fear is always there that it won’t last.

The pressure now feels compounded, though still thankful, this week anyway.

I am thankful for a writing group evening that started out moodily and ended wonderfully.

I must have been in a bit of a mood, myself, but the personalities of the writers in that room soon brought me out of my funk.

That’s why I go. Sure, it’s nice to write and hear some good old stories, but it’s those minds where the ideas for said stories come from that I am most grateful for, why I keep on going back.

I am thankful I was able to keep up with my first evening of secretarial duties.

We had our first official meeting of Ontario’s chapter of Canada Federation of the Blind.

I wanted an app to record the conference call, but I couldn’t be sure any were accessible and so I took notes. I did better with that than I thought I would.

We have multiple issues I feel are important enough to take on and hopefully tackle, to make even a slight difference.

I may never have a child to leave behind, but I do want to leave behind something. Maybe I can make a difference somehow.

I am thankful for a day of rejection and acceptance.

I pitched to two places. One came back thrilled for me to tell my story and the other had to pass.

I had a feeling on the second one and it hurt at first, but what I have to say isn’t right for every place. It might be the wrong time, though I would like to write about being a woman who may never have a child, not because I don’t want one, but for several different factors.

This writing journey brings both acceptances and rejections, and from what I’ve heard and read, it isn’t always about the writing. Sometimes it’s timing or luck. I’ve been very lucky this year so far.

I do like the lessons I am learning, over and over again, and I hope that sting of rejection will continue to happen and teach me that it isn’t the end of the world and that maybe something else can come along another date and time.

I am thankful for a lovely dinner with family and friends.

My mom went to a lot of work to make everything look nice. She is a lovely hostess. She put coloured peppers in the chicken. She baked a new fluffy casserole recipe for the yams. She put time and attention into welcoming a new friend into her home.

We all had a lot of fun and laughs.

I am thankful for wine.

And the wine I had with the evening didn’t hurt any either. It was nice to be able to wind down, at the end of a busy week, wind down with wine.

I am thankful for a short walk for mail.

I still haven’t been sleeping well and I needed a brief Saturday morning walk in the sunshine, with my neighbour, down the street to the mailboxes.

It was a beautiful morning and I came home refreshed and fully awake for the day.

On a day like that, it isn’t so bad that my mail doesn’t come right outside my door anymore.

I am thankful for the attention a dying man brought to what Canada’s next 150 years should look like.

Gord Downie cared about his country and knew he was leaving it and leaving this life. He wanted to take a step toward bringing us all together before he went.

I watched the live broadcast of the concert he put on a year before his death. It is a sad story, what happened to this one boy and so many other boys and girls and their parents and families for so long.

The lonely death of Chanie Wenjack – Macleans (READ THIS)

Different circumstances of course, but I see it as Chanie Wenjack was a symbol of so many other children here in Canada being forcibly removed and reprogrammed, just like Anne Frank went on, after her death, to symbolize all the children during the Holocaust in Europe during World War II.

I can easily imagine being taken from my home and forced into residential school. What a scary thing, especially if forced to speak another language and be separated from everyone and everything you know and love.

What were Canada’s governments and churches thinking?

RIP Gord, (1964-2017)

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The Heather By The River, #SoCS

Journalists. Photographers. And I use the term loosely.

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As a woman in my thirties, one who writes about things as my oxygen, I wonder what any of us would do for enough money. Would I write about people, even intrusively, for a living if given the chance?

Have I done it now? Already? Before?

How can it make anyone feel good about themselves to hound another human being, with their camera or their pen?

Responsibility: direct or indirect.

A world’s grief. Anger toward someone, needing to direct blame somewhere, the press. The press reports. The papers are printed. People buy the papers and mags.

More. More. More. We always want more.

From birth,
the two boys asked for none of it. That’s mostly where my thoughts return to.

I am not British and barely knew who Princess Diana was when she died. I wasn’t alive for the wedding seen around the world.

A sea of people, rather than water. That is what Diana must have seen when she looked from her vantage point, after saying her vows.

I would rather see a sea of Red or Black, blue or green, but the press fed off of the woman and she fed off of them, in a way, at least at first and for a long time afterward.

She was a fashion icon and a princess, but not only that. She used her position as a bit of an outsider, under the thumb of the monarchy, to become a change maker, by reaching out to those in need, those no one else wanted to associate with.

HIV and AID’s, in the 80s, when the hysteria about both was growing and at its greatest fever pitch. She shook hands, hugged those diagnosed and dying of the feared and misunderstood disease.

She came here, to Toronto, to sit by the beds of dying patients in hospice care. She walked a minefield, literally and figuratively. Danger signs.

Such grief of so many, I would not cry. As a fourteen-year-old child, fresh off of a kidney transplant and a thrilling wedding – I attended, my first of my oldest cousin. That was my wedding of the century.

Of royalty, I knew nothing. A fairytale life gone wrong is more like it.

Fairytales. I was familiar with these…the concept, the ideals, as a young girl. My Disney fairytale movies were my favourite. Cinderella and Sleeping Beauty, with the bright pink dresses and dancing with their handsome princes. I may have had similar dreams at the time, but what did I know? A lack of life experience and my own understandable immaturity.

What do titles represent, really? Sometimes, they bring just the right kind of attention and sometimes the wrong kind.

Now, upon reflection, twenty years later I do feel sad. I know of celebrity of her two sons. They are the British royalty of my generation.

I do perk up when I hear their names on the news. I bought the fake imitation giant ring, modelled after that of the one worn by both Kate and her mother-in-law, still lounging in my drawer. I woke to watch the wedding, once again broadcast live.

Prince William and Kate came to Canada after their marriage, the same date as my big brother’s own marriage took place. I hope one generation learns from the previous one, in certain cases, that sometimes it happens we grow wiser with enough knowledge.

They’ve come again since, since then, and with their two small children, touring parts of the country in which I live, that still sees itself as the child of Britain, past and present.

What is Kate wearing? Where are the couple going next? Are they in love, for real, or is it all just another fairytale?

But I do feel for two boys who, in August of 1997, woke up to the loss of their mother when I clung to mine for dear life, during some of the hardest and scariest times of my own childhood.

Are those boys/men in some ways like their mother, under scrutiny of duty, feeling hunted or like outsiders, wanting to reach out to those in need, perhaps not born with some of the advantages? They grew up with cameras as their mother tried to navigate a life of celebrity and being followed. She was hunted, more even than Prince Charles.

Now that I am more aware, I watch documentaries on the weekend after the anniversary of her death. I listen to stories of a nineteen-year-old who got married much too young, to an older man who shouldn’t have ever proposed to her in the first place, who was likely always in love with another woman. He should have been with this other lady all along and now appears that he is.

People marry the wrong person all the time, every single day and have babies with them. In these cases it is my hardest task not to judge because none of us are perfect. This challenges me as an adult who wants to see everyone happy, no matter whether they’re famous or not.

As a writer, this is my obituary of sorts, no matter how stream of consciousness based it may be, twenty years on.

From birth to death: Diana, 1961-1997

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