A few years back, late one night, I sat in silence and I thought. I thought and I wrote a letter to a special little girl in my life, about how she could be a superhero or a princess, or both. I wanted her to know she could do anything, be anyone, and go anywhere.
I wish I believed that, even here and now, for her and for myself and for all girls and women. I don’t, but I believe in our feminine spirit. We will. We are already accomplishing so much, more than women long ago likely ever would have hoped for, dreamt of.
It was really only one hundred years ago now since women were to be granted the same rights as men, voting rights, to help decide the direction of their own country. Canada started with Manitoba.
Women had to be polite, nice, and ladylike. They had to be whatever men wanted or needed them to be, but of course, not all of them were. I can’t judge, either way, as I can scarcely imagine what it was like in those days.
Heck, these days it still feels like we haven’t progressed nearly far enough. I must be patient, keep telling myself to look again at how far we’ve come, but then I say to myself that I don’t need to stay quiet and just be satisfied with the progress thus far. I can and should want more, expect more from the world. Us nice women are never happy I suppose.
We can all pretend misogyny didn’t play a part in the US election of 2016, but that would be as dishonest and disingenuous as saying that neither did racism show its true colours…yes, even after a black man was in charge for eight years. There were many factors, of course, but all the denial is nothing new. It just continually surprises me how prevalent the need is to pretend we’ve come far enough in our efforts to accept each other, to recognize all we have to offer for our gifts and talents and viewpoints.
I am not from the country that just voted yet another man to run the show. Actually, I am from Canada and we did that last year. He will do, for now, but somewhere in Canada there is a young girl who will be the woman next in line.
We had a female prime minister, over twenty years ago, but for only a brief moment in time, set up against all the nearly 150 years of being run by men.
This means we keep moving forward, not going back. Any good election slogan is one that will stick in people’s minds. The most recent example, Make America Great Again, this is one of the most baffling things I’ve heard in a long time. No part of North America was all that great for women, during this period of “again” everyone loves to reference.
I miss all the memes meant as activism, because I can’t see, that circulate on Facebook nowadays. I read and I write because I can. I blog about all that will never stop being important to me and to the better world I want to see the next generation grow up in.
It’s funny how the slogan from a century ago fits into a lineup of words that can’t possibly hold down or peg down any human being.
What else is there to do when “nasty” is used to describe a strong woman or when “deplorable” is used to label any sized group of your opponent’s voting base? If you can’t beat em, join em, is that it?
All I can say is, we’ve all got our work still cut out for us.
When it comes to blessings, many have been bestowed upon me in my life. That’s why I continue to write my weekly thankful post, going on fifteen months now.
I am drawn to this challenge and Ivy is one of the good ones, always supportive and hosting an always interesting blog.
I just struggle with not seeing anywhere near to do any sort of visual art in the last several years. I can find blessings, but losing my ability to see colour has been a tough reality to accept.
I will never stop celebrating and appreciating art, in all its forms.
So thank you Ivy, for everything you do.
For my childhood home and my access to it even after I’d moved out and so had my parents.
My sister loved that house so much that she lives there now with her own family.
This means I didn’t have to give up the place where all my early memories were made. I can see it whenever I need a reminder that I am safe, loved, and always welcomed home again.
That I got to meet one of the closest people in the world to my oma while she was alive. That my parents took me to Germany to visit my oma’s cousin, as I’d probably met her several years previous to our trip in 1998 but I could not recall.
RIP Gerti. You are at peace now, with my oma perhaps. If you are, I am certain there are some most excellent talks happening between you two, (half in English and half in German) like the good old days.
That I got to hear the song that means so much to me, one I wrote lyrics for that are very close to my heart, and now have life and breath brought to my words.
After I listened and let it all just sink in, I am dying to share “Decade Adrift” with the world, but I must hold back because it is not complete just yet.
It is still so strange a feeling to hear someone sing words I wrote. I love it though, don’t get me wrong. It’s an incredible feeling actually. I am blessed that anyone at all would use my words in a song, like my brother has, that he’s put so much energy into. Then to hear them sung capably is just the best thing.
For a special Mexican writing workshop discussion on Skype with my writing mentor.
We had one of our hour long Skype conversations, but this time we didn’t just speak about my writing in general, in other areas. We spoke about when I travel to Mexico to attend her multi sensory writing workshop.
She explained how the week will likely go. I listened, leaning in so as not to miss a single detail.
She is making so much happen for me and I owe her so much for that.
For my brothers and their determination and computer knowledge and persistence, for Imgur, and a once more functional wireless keyboard.
Every single time I find myself starting fresh with a different computer, I must set things up the way that works best for me, for my writing and blogging and VoiceOver settings for all of those things.
So, maybe you’ve noticed lately, I have not included photos in any of these posts.
Well, it’s because I’ve had to get used to a new Mail program, updates, and so much more. I struggle with whether or not to include photos at all, as I can’t see them and, unlike words, images are unclear and vague concepts to me now.
It’s nice, however, for most of my readers here, of which can mostly see and do enjoy images. I wanted to get this stuff all straightened out and then, to top it all off, I couldn’t get my keyboard working through BlueTooth anymore.
And so, one trip to visit my brother and with the help of my ever trusty younger sibling, we’re (that’s to say I’m) BACK IN BUSINESS!
My brother discovered I needed something entirely new to me which is a program called Imgur. He, well both my brothers, they are much better at following instructions and all the proper steps to make such changes work properly.
My oma (spoken of above) once gave me a stuffed bear wearing a suit, glasses, and a hat, on a stand. She told me:
“Here’s a man for your bed.”
This was my European grandmother, not realizing the hilarity many would find in that one innocent statement.
Well, now we keep the joke going by saying I need a man, but in this case, for practical everyday reasons – a guy, to help me with all the tedious computer and technology stuff I struggle with.
So, instead of waiting for a man/guy, I have my awesome brothers and their readiness to help me fight through these issues that seem to be never ending.
For an enjoyable day spent out in the back yard, in lovely August weather, with family.
If I am starting to use photos once again, I wish I had certain photo evidence that carrots can, indeed, grow on trees, apple trees to be exact.
😉
A squirrel likely had a carrot in its mouth and left it dangling from the apple tree in my brother’s back yard. He is a photographer, but did not get this as any sort of photographic proof.
But balls were thrown. A dog was pulled along on his leash by an excited little girl. Gardening was discussed. Birthday presents were opened enthusiastically by all involved.
For this most excellent little sighted guide.
She is now at the age where we can play “guess which one of your aunt’s eyes is the real one” and she understands. Not freaky at all, right?
She gives her little left hand to me and her right to my brother and leads us out of the restaurant, all in a bendy row, our white canes out as well, just in case..
**Our Mission is to demonstrate that more awareness needs to take place for visual impairment and blindness.
For the awareness campaigns I am able to take part in, such as
Superman was always one of the last of the superhero stories I would choose. I was always more of a Batman girl. I don’t know how many Superman films I watched there for a while, but none of them stuck with me as being particularly interesting. I didn’t understand the whole backstory or even the definition or importance of kryptonite.
That’s why, when I read this week’s FTSF prompt, I froze in my tracks, unsure if I would write anything at all, have anything to link up with.
I looked up the meaning, refreshed my memory, but still drew a blank. Kryptonite meaning, basically, weakness and still I was coming up with nothing.
Come on, I nudged myself over the last few days. You’ve got to have a weakness. What is it? What would be the main one?
I am working on writing my memoir. It seemed like a perfect moment in time to start again, as I think back on the twenty years, exactly, that I was diagnosed with kidney disease as a frightened twelve-year-old.
Since that point I have been called brave and inspirational many many times. How did I do it? How was it that I managed to survive feeling so sick, dialysis, and surgery to have a transplanted kidney from my father?
I am not as strong as all those well-meaning family, friends, medical professionals, and acquaintances assumed. I don’t want what happened twenty years ago, what was only really a few years out of my whole life, to define me forever. I try to get past it, really, but I keep going back to it and writing my story down is a big part of that.
Sometimes I wonder if that’s even a good idea. Maybe I should just move on and look ahead. That’s what I am doing, but then I turn my head round and admit to myself that what happened during those rough months, all those years ago now, that stuff left its mark on me and I can’t honestly say I don’t look back in reflection.
My kryptonite is the past. It’s the affect a physical illness had on my body, my mind, the girl I was trying to grow into.
It influences my body image even now, as a grown woman.
When I was treated I was clearly under-weight and malnourished. I was lacking proper vitamins and minerals, things the kidneys are supposed to take care of.
I stayed stable on dialysis and I had the transplant. This got me back to a healthy state, but I went from being barely eighty pounds, maybe less, at age twelve. My puberty was hugely disrupted. I was not growing.
Once I had a working kidney, one being all you technically require, I began to gain weight. I gained weight as a side effect of more than one of the medications I had to go on.
I remember standing on our bathroom scale, realizing I was ninety-two pounds, and starting to panic. I wasn’t relieved I was gaining. I was horrified.
I was weighed every time I went on and off the dialysis machines. This was necessary, to monitor my fluid loss and gain, but it played havoc with my head. I was shown to focus on weight, at a time I shouldn’t have had to, when only months before I was pushed to put on the pounds.
Now, the weight was coming on abnormally quickly and I was visited by dieticians who went over the list of foods to stay away from if I didn’t want to gain even more weight.
So now I like my chocolate but I also like my fruit.
At Easter I love chocolate eggs, but come summer I go nuts eating strawberries, peas straight from the pod, peaches, and apples for weeks and weeks on end. They are really all I want to eat.
All in moderation. Diets don’t work. Or avoid some foods entirely?
I can list all the excuses in the book as to why exercise and weight loss hasn’t been easy for me, but I know I am not alone. I must keep plugging away at it, remaining mindful of it. I don’t want to make excuses, to use chronic pain or my blindness as reasons why I am now gradually gaining weight over time. I only get my kidney checked twice a year, but they still take my weight at the start of these appointments, and I am forced to look back and try to recall what the scale read six months before, to keep track, somewhat, of where I’m at. So although I don’t keep checking my weight on my bathroom scale every morning, I’m made to be accountable, every time November/April rolls around.
Yes, the meds have decreased, things are more moderate now, but the damage is done – floodgates have been wide open for twenty years. I deal with something so many people deal with, I know. Emotions also play a part and my psychological state becomes a factor.
Can I keep things under control? Can I not let the events of my past rule my present or influence the future?
My kryptonite are the stretch marks I’ve had (not from a pregnancy, like most women my age), but since I was on high doses of prednisone, when I was fourteen years old. I can feel the clear visible evidence of how it all began and I feel weak because I can’t keep things in balance as much of the time as I’d like, but that’s why I write about it all. I hope that part doesn’t make me weak. I don’t feel all that brave or inspirational and I don’t want the weaknesses I live with to bring me down. They do serve as reminders of the scars of my past and the toughness, as they’ve driven these bits of my past in deep.
Well, while “I can see!” would have been a great reason to miss a weekly feature like this one, I was actually participating in a monthly blogging initiative and getting pulled into a stupid mistake.
More about that later this week.
***
Q: What things are most important to you when it comes to media representation for people with disabilities or your disability in particular?
A: There is a lot to this. Hard for me to choose just one thing, to even attempt to narrow down the subject matter.
I do know there was a lot of talk, in speeches at the 2015 Academy Awards, about being who you are and standing up for homosexuality, gender equality, and other rights for those with disabilities.
There were several films about people living with disabilities that were nominated or that won awards.
A blind person can’t act.
Well, okay they can, but they don’t. I think it’s a strange thing. I did it a few times.
Granted, it was only a small part in my eighth grade school play, but I admit I felt the adrenaline of being up there, on stage, in front of a crowd.
Not seen. Not heard.
There was a recent storyline on a popular daytime soap opera recently.
A character on The Young and the Restless went blind in a fluke and a terrible electrical accident.
At first he was really angry and threatened to return to his old habit of drinking, to dull the pain of feeling like a burden.
Okay, not so out of the question because going blind, so suddenly, that could happen.
Now, I am aware soap operas aren’t normally known for their authenticity. They often have crazy and outrageous plot lines.
This particular soap had a character, back in the nineties, that was blind.
This time, this particular character’s blindness was a temporary affliction. It was never intended to be permanent.
“What kind of a man can I be for you? I can’t even see.”
This line hit a nerve, when I heard it. Of course he said it while drowning in self-pity, but it’s all in how things are perceived and portrayed.
The character got a wake-up call and began to learn braille. He took on the responsibility of his own independence and began using a cane.
This storyline was used to run a certain course, to play it’s part. Then it was over.
Media is a very powerful force in most people’s lives, whether they want to admit that or not.
The media does have a certain responsibility for how it shines a light on disability in our culture.
As long as disability is seen as a burden and an affliction, in the medias eyes, that is how everyone else will see it too.
Change does come, if not interminably slow from the perspective of those eagerly awaiting the change in question.
I am currently checking out the Netflix original series: Marvel’s Daredevil.
Making one of these cool guys blind can only help in the media representation, right?
Well, that is yet to be seen, but I have been reading about the outcry to make the show watchable for the very people who might want to watch this phenomenon play out and couldn’t.
Advocates, such as Robert Kingett, are fighting for accessibility. In some cases, it’s working, slowly but surely.
Of course then there’s the inevitable counter-argument to be made, and it has been made alright.
🙂
I read a recent Facebook status from a visually impaired guy on my newsfeed that questioned why only a series about a blind superhero would be given audio description.
Netflix seems to be making other shows accessible as well, but only time will tell how far this goes.
I haven’t even gotten this to work for my television.
At the start of certain shows now, I will hear an announcement to let me know:
“This show is available in descriptive for the visually impaired.”
Unfortunately, I haven’t even figured out how to access this most of the time.
It’s not made easy.
I am now working on Netflix. I would like to give Daredevil a shot, to see if it’s as brilliant a show as others have said and if I can let go of my own issues, to just enjoy the show and the character, and not let the hype bother me.
Because like a lot of human beings, I am rarely ever happy and satisfied.
When there are no visually impaired characters represented in the media I am upset.
Then, as soon as one appears (slow progress, like I said) I am still not appeased.
I can be as fickle as the next person. I don’t know what will bring the best kind of awareness and what is the best way to represent the section of society that is often seen as lacking or poor off.
I am off to see if I can figure out how to access audio description for Daredevil.
Her Headache 
