Tag: disability

Not another Royal Commission!

personby Gillian Polack
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This is a quick note because my week is just a tad busier than usual. First, there’s always catching up on paperwork to do after Yom Kippur, because people always send me things, assuming it’s a normal day. I’ve made a little list of some of the things that must be done by Wednesday afternoon. It’s 14 tasks long and some of them are quite hefty tasks.

The question is, why Wednesday?

I’ve talked about the Royal Commission into Antisemitism and Social Cohesion at great length, but I didn’t mention the other one. I’m giving my testimony as part of a group testimony on Wednesday afternoon. It’s into disability. I tick all the “Who has been left out in our current system” box.

I’m not doing a written submission for this. My right eye is problematic and my vision is even more impaired than usual, so it would be a lot harder than the earlier submissions. But the RC into disabilities is allowing for such things and a group of us is being brought together online to work through the framework and explain the things the Commission needs to know about our lives.

I’ve never done things for two Royal Commissions within six months before. I had a whole submission published and cited in the report for one, many years ago. They’re not an ordinary part of our lives, but they’re one of the places and times when we can interface with government on issues that are beyond the ordinary. They are terrifyingly expensive, but they’re also exceptionally valuable. Even when the government in power pretends to accept the outcomes of a Commission and never does anything, the process shifts Australia and makes us choose our paths more carefully. Initially, the RC into Antisemitism caused a tsunami of hate, but as people saw that tsunami and thought it through, I think the hate is diminishing a little. I won’t know, however, until the studies of it are in.

If I remember and if it’s not classified, next week I’ll let you know what happened on Wednesday. The government methods of other countries always entertain me, so maybe they will also entertain some of you.

If any of you would like a 101 on our parliamentary system and an explanation of how we vote, I’m happy to explain. We are so different from the US and Canada! And all this stuff used to be my meat and drink. Being Jewish excludes me from those circles right now, but I had 20 years of working to help people within the system and I loved it.

Limitation as a Virtue

personby Nancy Jane Moore
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Alex Washoe, a writer I follow on Facebook, posted this quote the other day:

Your style is a function of your limitations, more so than a function of your skills.

– Johnny Cash

It got me to thinking, which was her purpose in posting. It’s certainly something that applies to all kinds of artists.

There are many different kinds of limitations. I recently finished the book What Can A Body Do? How We Meet the Built World by Sara Hendren, who teaches design for disability at Olin College of Engineering. The book is much more than an explanation of cool methods developed to address various disabilities (created both individually and as systems); it also gets into discussions of social and philosophical complexities.

For example, she discusses the experience of Audre Lorde, who had a mastectomy and declined to use a prosthetic, only to discover the expectation that she should wear one to make other people comfortable even if it was not comfortable for her. Hendren observes:

Her post-op prescription for prosthetics was never solely about functionality; it carried a social meaning.

And a discussion of humans as tool users – one of the most basic things we do – leads her to muse “your everyday life offers non-stop evidence that the body-plus may actually be the human’s truest state.”

Because I’d recently read the book, my first reaction to the word limitations was to think of those that come with every human body. Even if you aren’t disabled, there are things your body won’t do that someone else’s does easily.

Some people are very physically flexible; others will never be no matter how much stretching they may do. Certain activities require certain body types – ballet dancers are a good example, one made most stark by the fact that so many of them are retired by the time they are forty because even with the perfect body they are doing things that cannot be sustained into old age.

However, a lot of people who have a passion for dance have found ways around that, ways that incorporate their limitations. There are dancers who perform in wheelchairs, dancers that have curvy bodies and big hips, dancers who are not remotely young. Their limitations are part of their style.

A singer might have a voice others find pleasing, but still have a limited range, which affects the songs they sing and the way they sing them. That is style. In fact, there are some singers whose voice is not necessarily pleasing to all – Bob Dylan comes to mind – who make a virtue of that necessity. Continue reading “Limitation as a Virtue”…

Who We Write About

personby Gillian Polack
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I just posted about one of my novels, Borderlanders, on Facebook. Let me share that post, and let me add to it.

Memories…
This was the book wanted by readers on FB. I noted (on FB, obviously) that my academic stuff had given me a way of writing a novel with a chronically ill protagonist where the protagonist remains the hero, is not cured, is not killed, and is not replaced. I was going to teach this method to others, but first COVID intervened and then antisemitism. I don’t get to teach much, these days. I may have to write another novel, having said this, because I learned so much in writing the novel that I could now write a much better one.
What’s very strange is, during these 5 years, more people I know have the illness my character had, due to long COVID. I’ve had it since I was in my twenties, but I’m one of the fortunate ones for whom it goes into abeyance. Right now, I’m trying to coax it back to sleep. Not everyone has that luxury, which is another reason why I should write another novel. Not yet, though. While it’s awake, every moment of every day is not straightforward, and I am behind on all my fiction.

This mysterious illness was known as chronic fatigue in Australia in the late 1980s, but these days it’s called ME and the fatigue is just a symptom. We know a lot more about it. One thing we know is why walking up the street can be so impossible. For some of us it can set the illness back, and for others it can destroy life entirely. This is why I consider myself so fortunate. I may have to not do much for a few months, but after that time I can do a little more and then a little more. This is just as well, because it’s only one of several illnesses I have and I have this daft desire not to be bedridden or die young.

For me, the most annoying symptom is when my executive function is not working. I lose time (sometimes weeks) and can’t do simple things. Oddly, I can still write books.

I always tell folks, do not assume someone can or cannot do a thing when they are ill. Ask them. And ask them each and every day if you must, because the small everyday can change. Some days I can walk up the street and back and I can write 6,000 words. Other days I can hardly get out of bed.

The illness is not just part of our everyday, it becomes part of who we are, for better or for worse.

I would like to see a superhero who has ME. It would be such a wonderful thing, watching them change the world… on days they can do more than toddle. And seeing how other people respond to the wild level of change they see when a powerful person has to watch what they do every minute would provide a great sub-text to a movie. It’s quite a different set of options than those for someone who cannot walk without assistance, or someone completely confined to bed who uses their amazing telepathic abilities to run the world.

There are so many amazing stories in the lives of the people we mostly prefer not to see. I now want to see a whole sequence of superhero movies or a TV series that focuses on those lives. There is a different sort of heroicism when one is not visible and has to fight just to get through the everyday, especially when they do astonishing things. Most of those astonishing things are attributed to someone else, because, of course, the invisible and half-seen can’t possibly be the heroes we dream of. Except, of course, they are. I get through my illnesses because of those people. Some of them are role models and some of them help when others don’t even begin to see that I might not be able to ask for help when things are bad.

One thing about this non-extent show: costumes would be far too problematic for some of the hidden heroes. So would heroic stances and being randomly interviewed by reporters. It would be such a different and fascinating set of stories.

In real life, I’ve met these invisible people in essential services. From a desk or from home they make a lot of the everyday possible for so many other folk.

One day, I will write that second book.