Category Archives: Asphyxia’s Life

My Eccentric Uncle

I think many of us have an eccentric uncle lurking somewhere in our family. Back in 2012, I went to visit mine, and I came away stunned, in a very good way. Let me give you a guided tour of the photos I took that day.

Here he is: Mark, my father’s twin brother.

My Eccentric Uncle 1

Despite being as Australian as they come, I think Mark would prefer to be English. He dresses like an English gentleman, every single day. I remember him from when I was very young, skulking in the background of my grandparents’ stunning and magical garden – all Mark’s work. Mark has never had a paid job, nor a driver’s licence – jobs and the driving of cars are terrifying prospects, he told me once.

When I was a child he bought a large, empty block of land, and set about creating an English manor, along with his very own garden. He and his partner, Michael, dreamed, planned, schemed and worked together. Here’s the result:

house 2

My Eccentric Uncle 2

Lacking the funds to fit it out in the true Victorian English style he longed for, they went for a DIY method for creating grandeur. For the main lounge room Mark painted portrait after portrait. He wasn’t having any prints – they had to be the real thing. He copied old masters.

inside house 1

When I expressed my amazement that he was so skilled with a paintbrush, he pffted and told me not to be silly. “They’re just copies.”

They created a true gentleman’s library:

inside house 2

However, most of the books are empty covers. But you can’t tell they’re fake unless you look real closely. In a closet, Mark has a real library, winding shelves upon shelves of reference books that have helped him create this dream. When I was a child, he opened his books about Queen Victoria’s doll’s house for me, and I think the intricate details I fell in love with then planted the very first seeds for my love of miniatures that eventuated in The Grimstones.

The rest of the house is peppered with decorative shelves of old books:

inside house 3

Mark made these shelves himself, including the ornate gold trimmings.

The house has many guest wings. My favourite is this one:

inside house 4

inside house 5

Mark made the four poster bed himself. He sculpted these mouldings, made a cast, poured them in resin, and painted them:

inside house 6

However, after fitting out about half the rooms of their magnificent home, Michael became ill with AIDS and died. Tragically heartbroken, Mark wondered what was the point? Why create this beautiful place when he had no-one to share it with? For years, the project floundered.

He did maintain his garden, however, which was magnificent. Filled with beautiful pathways, they led us as if through a complex maze:

outside house 1

pathway 2

pathway 3

Last time I visited, which I think was about ten years ago, the garden was a series of these lovely nature walks. I set off with Jesse to walk and enjoy.

Before long, we came upon something that wasn’t there the previous time I visited:

zues 1

Curious, Jesse and I ventured in. We discovered the stone floor had a hole:

zues 2

Beneath the grate, there was a statue! And maybe two metres below that, burbling flickering water! I glanced around, thinking the ground had been flat, wondering how this came to be. Was it a glorified well? I realised that beside the path, the hillside cut away, and that by walking down it further, we could see under the floor. We climbed down, and found:

zues 3

A cave! Hidden from view from the pathway – a little gothic surprise. We went inside:zues 4
There stood a statue of Zeus, surrounded by green-tinged stalactites, and a magnificent burbling pond. Wow!

zues 5

At that point, Jesse and I went back to fetch Mark, to ask him about it. We didn’t realise that if we had continued the way we were going, we would have come upon many more surprises. Mark led us a different way towards Zeus, and we found:

Yarra and Barwon.

A pond guarded by the river gods, Yarra and Barwon. And then the jaw-dropping piece of information: Mark sculpted these enormous, larger-than-life statues himself! Just like the four poster bed mouldings, but on a much grander scale, he used clay to sculpt the gods, then latex and plaster to create a mould, and poured them in concrete. They were made in several pieces, so that each could be carried down individually and set into place. It seems Mark has moved beyond the English Manor and into the realm of ancient Roman gods. it also seems that he’s no longer floundering, since Michael’s death.

Hidden amongst the greenery was this, invented and sculpted by Mark himself, not based on any ancient god:

lion 1

And then we came upon a grotto, so hidden by the trees I couldn’t get a photo of it. But we went inside to meet the god of Pan, represented by a pair of statues:

Goodofpan

Goodofpan 2

Once again, these were entirely sculpted by Mark, along with the stalactites and all the mouldings in the columns. With the head of a goat at his hips, Pan is ornate and magnificent. Mark is waiting for the day when he is stained and mossy, reflecting the true ruin he is supposed to be,

We found serpents guarding the gates of hell (hell must be a spectacularly beautiful place):

gateofhell 1 gateofhell 2 gateofhell 3
And enormous fish:

 

victoria 1

And fountains set in the junctions of the pathways:

victoria 2

Again, everything was envisioned and sculpted by Mark, realised with the aid of Sebastian, who poured the concrete and lugged the massive pieces into place.

At one place we came across a pallet of pieces that had not yet been constructed:

Marion and Hawksbury 1 Marion and Hawksbury 2

These, Mark told me, are to be Marion and Hawksbury. “They’ll be set into the hillside here, feet to feet. Shadowy. You’ll hardly see them. Perhaps you’ll do a double take.”

And that’s when I realised that the surprise Jesse and I had when we discovered Zeus, the magical moment when the impossible seemed to be lurking far below the surface, was all planned by Mark. A sort of theatre, as an innocent garden walk of overgrown trees rustles to reveal murky but magnificent surprises. He’s waiting for the plants to grow over his constructions, to hide them so that you see them from one angle but not another, and for time to age everything so that they blend into the garden.

As Jesse said to me, “When Mark’s dead, this will be a museum.” And I imagine his home will be an incredible guest house. I asked Mark once, years ago, if he would have his house as a bread and breakfast. “God no,” he replied, “Imagine doing all that work. I couldn’t bear it.” And yet, this is a man whose work is so prolific, I cannot believe he’d created so much in the ten years since I visited.

He told me he only does an hour or so of sculpting a day. Mark rises in the afternoon, and ventures into his garden. He comes in to eat an evening meal and some chocolates, do his hour of sculpting, and then watches television until dawn. As the sun rises, he retires to the most modest of his bedrooms, scarcely more than a closet, to go to bed.

Organising My Memorabilia

You might have heard of Marie Kondo, who wrote The Life-Changing Magic of Tidying Up. She suggests you only keep things which bring you joy. That may sound a bit impractical, but I decided to follow the programme she created to find out for myself. It was a mammoth job, to put every single aspect of my life in order, and complete all undone tasks. I thought I didn’t have much stuff, but it took three months of being my major project.

The rewards were huge – not only was all my stuff sorted, organised and well-stored, but I learnt significant skills along the way which I believe I will use for the rest of my life. I highly recommend giving it a go.

By far the biggest area for me was organising my memorabilia. I can’t tell you how amazing felt to have sorted and made accessible every photo since the day I was born, every old home video, every newspaper clipping and poster I want to keep. In retrospect, the most challenging thing was working out systems for storage of these items. Kondo doesn’t give precise guidelines for how to do that, so I had to make up some of my own. In case you’d like to have a crack at getting your memorabilia in order, I thought I would share my process. I can see that with my systems in place, it will be much easier to keep incoming photos, videos and other momentoes sorted, without letting them build up to the chaotic mess that I had when I started.

PHOTOS

First thing to do is gather all your photos into one place. Digitally that means into some kind of photo-organising software such as iPhoto or Lightroom (which I use). In real life that means you get your albums and boxes of photos and make a pile.

I started with the pre-digital era. I had an album my mum gave me when I turned 18 of photos of my childhood. Looking through it gave me much joy. I could have kept it as it was. But the problem is, my photo albums, when gathered together and stored in a large plastic tub are just too heavy to carry. They lived in our shed, so if I wanted to look at a photo, I’d have to heft the tub off the shelf, at great danger to my back, and then I could only carry one or two albums into the house at a time. The result: I didn’t do it, and never looked at the photos. We don’t have space in our small house to store all our photo albums, so keeping them on a bookshelf in, say, the lounge room, was out of the question. I decided to remake the album in its entirety.

Using an iPhone app, I scanned each photo. I didn’t want to damage the album in case I changed my mind half way through, so I opened up the plastic covering, left the photos in place, and positioned my phone above each one to snap a photo of it. I started at the beginning and worked forward, so that if I sorted by date, the photos would be in order. Then I imported into Lightroom and spent a bit of time with each photo, increasing the contrast, adjusting the colours and orientation. I created a folder on my harddrive called Family Photos, and a subfolder within that called 1974-1989 My Childhood, where I stored all the photos.

For my remaining albums, I decided that I had too many photos – multiple photos of the same event, too many of people I barely remembered. I also had boxes of extraneous photos. I sorted the loose photos, choosing only the best to keep, and chucking the rest. I put the loose photos wil the album that most closely corresponded to that time in my life.

Then I started with the earliest album and removed just the best photos, which I would keep, adding in the loose photos at appropriate spaces. Often I ended up ditching the loose photos when I realised I had a better one in my album from the same event. I made a stack, ordered chronologically, of just my favourites. I took them to Officeworks for scanning – I found using the iPhone app tedious, and later I felt that the quality of the Officeworks scans was much higher. The scanning cost me $0.40 per photo. I did this step in batches – first the era between my childhood until I met Paula, then Paula’s and my early life together, then baby photos once Jesse was born, and so on. To do them all at once would have been too unwieldy and overwhelming.

Once all my photos were tweaked and stored digitally in folders corresponding to that era, I imported them into iPhoto to make Apple photobooks. I don’t think the Apple books are necessarily better than any others, but I had already printed a couple of these books, was happy with the quality, and liked that my new books would be the same size and shape. They would be pleasing sitting together on my shelf.

For most pages I used the 6-photos per page design, which meant that many of my photos were printed quite small. Even in small size, the image jolts the memory and makes me happy, but doesn’t take up too much space. It meant that my entire life, up until now, could fit onto four photobooks.

Memorabilia-4

I stored them on a shelf in my wardrobe. They are small and light and already have been passed around interested visitors, in a way that I would never have done with my old albums. The old albums I threw out, except for that childhood one which Jesse wanted to keep. I’ve put it in the box of stuff I’m keeping for Jesse for when he’s grown up. Whenever I print a photobook of our family life, I print an extra copy for Jesse and add it to his box. As my mum did for me, I’ll give them all to him when he turns eighteen.

Finally, I exported all my Lightroom folders of photos, and stored them on Dropbox, and also on a USB stick and an external harddrive, so I’ve got plenty of back ups. It’s easy to find a photo because there’s not too much to wade through, and they are sorted by era, and in more recent cases, by year.

VIDEOS

I got all my old VHS and mini-DV tapes and paid to have them converted to DVD. Then I used the free software Handbrake to rip from DVD to my computer. While Handbrake can rip at full size, I ripped a bit smaller. Like with the photos, I don’t need the highest quality image to enjoy it – I just want the memory. By ripping my videos smaller, it meant I could make a folder of home videos that is small enough to keep on my computer and Dropbox and that USB stick.

I used iMovie to edit the videos into small movies of around 5-15 minutes each, with a theme. I had a lot of videos of Jesse playing with his friends, dancing around wildly, so I created a dance video with clips of them from that time, all mixed up. It’s bright and fun and captures just their funniest moves. I made another video of my circus training days, that includes snippets of training on trapeze, web, cloudswing and more. I made a video of our family life for a particular era, and another video of my extended family. Each video I exported with the filename as YEAR_WHAT IT IS. Eg 2003 A day in the life of Jesse aged 7 weeks. That means that by sorting by title, they will be arranged in chronological order, and it is easy for me to scan through and find a video that would be of interest to show others.

I stored all my edited video clips in a folder called Home Videos.

WRITING

I had a whole box of my creative writing from when I was a child. Novels and short stories I’ve written over the years. Many were print outs for which I didn’t have a matching digital file. I discovered that one novel I’d written had disappeared altogether. Although every time I’ve moved computers, I’ve been meticulous about transferring across my writing files, and I did have them all in Word orginally, obviously some files have not come across and I didn’t realise at the time. Hence the importance of keeping hard copies of these sorts of things. I was glad I had the print outs. It’s also why I made sure to print photobooks of my favourite photos.

I used Evernote app Scannable to scan in my documents – I found that easy and straightforward. The result was a PDF for each novel. I then loaded the PDF onto Google Drive and opened it with Google Docs – that automatically used OCR software to turn it into an editable document. Some docs came across fantastically and only needed a bit of editing to fix them up. Other, older pieces, that were printed back in the 80s, didn’t come up so well, and needed a lot of work to restore.

I decided to use Lulu to print a single book that contained all my creative writing and novels. Lulu is a print on demand self-publishing platform and the prices per book are very reasonable. The books look incedibly professional. I downloaded a Word template, and pasted in all my stories, making sure to follow the formatting. Using Heading 1 style for the title of each story, I could then generate a table of contents. I wrote a little introdution which describes each story, so that later if I or others want to read them, it’s easy to find one that will appeal in the moment. For the cover of my book, I ripped off Penguin’s classic book cover. I created a file in Photoshop with my book design.

Memorabilia-1

I used the same templates for inside and book cover to create books with different coloured covers and titles, to print other items, such as my old digital journals, and a book I’d written about building my house. After I’d printed them all on Lulu and arranged them on my shelves, I was thrilled with how they looked. A key thing in creating these books was to keep it simple. I just used default templates and didn’t add fancy designs or fonts. All the books I printed have the same cover format. This saved me time and stress.

Memorabilia-5

Memorabilia-6

FOLIO

Over the years I’ve collected many press clippings from newspaper and magazine articles about me and my work. I arranged the best of these into plastic pocked folders, again in roughly chronological order, and included folded versions of my favourite posters and flyers from shows I made. I also kept a handful of posters which I rolled into a tube, which I might use later.

I ended up with three plastic pocket folders of clippings, which I’ve arranged on my shelf, along with a fourth one ready for future clippings, should there be more!

Digitally, I also organised my press clippings and work related memorabilia. For example, I had video clips of showreels for each of my circus acts, and I had videos and photos from various shows that I did. Since I do a lot of public speaking and am often asked to talk about my experiences, I find it’s helpful to have photos that reflect my history, but when the time comes, I can never find what I’m looking for. I’ve now made a single folder called Folio, in which I keep a record of publicity photos for my shows, key newspaper articles, and other achievements that reflect things I often speak about, such as building my house. I included a few photos of me as a child making dolls, and as a goth during my teenage years, to illustrate the way these fed into my creative life later. Again, every file has the year first, followed by a description of what it is. If I sort by title, they are in chronological order. Now if I give a talk about, say building my house, or obstacles I faced becoming a Deaf circus performer, I can grab the relevant images from my folio folder to illustrate my talk.

This digital folio also forms a wonderful record of my achievements to date and gives me much joy. Once I’d compiled everything and sorted by year, it was easy to include key files with my photobooks, so that my new albums also contain images of the shows I was working on at that time and articles in the press that made a difference.

I made a separate photo of Work Videos, again, each one titled with the year first, to put them in chronological order.

WRAPPING UP

The final step was to create a folder called Memorabilia May 2016, and store all my sub folders in it. Once a year or so, I plan to add in new photos, videos, writing and folio items, and then I’ll update the date on the folder name. I’ve backed that up by storing it on Dropbox, an external hard drive, and a pair of USB sticks, each stored in a different physical location. Having put so much work into organising my memorabilia, I’d don’t want to risk losing it!

All my physical items I arranged at the back of my wardrobe shelves. They take up about 1.5 metres of shelf space, and consist of my journals (that’s most of it), my photo books, a copy of each book I’ve had published, the Lulu books I made of my writing, and a few miscellaneous items such as some scrapbooks, a folder of drawings from when I was a child and a book my mum made about our ancestors. Also filed as if it was a book is a small book-sized box, in which I keep a few physical treasures.

Memorabilia-3

Since my wardrobe is deep, I also store other items in shoe boxes in front of my memorabilia. I don’t need to access my memorabilia every day, but now when I want to find something, it’s right there, not buried in a box in my shed, and it’s easy to move the shoe boxes out of the way to find what I’m looking for.

Memorabilia-2

There you have it. Pardon the somewhat tedious descriptions. I wanted to show you HOW it was done. I would have found a guide like this really helpful, back when I was looking at boxes and boxes of stuff which didn’t, as a whole, bring me joy, even though the individual pieces did. Like I said, it took me about 2 months to do this, spending around 20-30 hours a week on the project. I wish I’d done it sooner. But now it’s done, I doubt I will ever let my memorabilia spiral out of control again. My systems should make it easy to maintain and catch up, with a bit of attention once a year or so.

All my creative things are stored and arranged neatly at my studio at the Abbotsford Convent.

 

My studio-4

My studio-3

My studio-2

My studio-1

All this organisation makes for much less clutter in my brain It’s easy to find things, and I feel lighter and clearer.

When I threw out most of my clothes, I was a little worried that I hadn’t kept enough. I could later see that I had plenty, and could easily pare down further. Here they are, arranged in shoe boxes so they all stand on end. I took these photos when some items were in the wash so you could see the box system.

Memorabilia-8

Memorabilia-9

 

We really don’t need much stuff to live well. It was amazing to have put my life in order, completely, and caught up all the un-done tasks that have been at the bottom of my to do list for years. I felt I learnt skills that I will apply for the rest of my life, for managing and storing my stuff. It was worth the huge life focus it took. I highly recommend it!

How to put up local food for winter

 

 

 

 

 

 

One of the best ways we can reduce our resource footprint is to cut down on food miles. By learning how to preserve local food ready to eat in winter, we can end up with a pantry full of cheap food that is tasty beyond anything you can buy in the supermarket. You also avoid producing heaps of waste, another plus for our planet.

It’s actually not that hard nor time consuming. I can fill these shelves with a few hours a month from November to February, and then in March I spend a few days on the tomatoes. The hardest bit is doing it for the first time – collecting your jars and preserving equipment, and figuring out where and when to get the best local surplus food.

Although it may seem strange to think about winter when the weather is just warming up, now is the time to get organised to make sure you can eat local food all next year. Start with cherries and apricots in November and December, and finish with tomatoes in March or olives in June.

I’ve written about how to do this in more detail here.

Don’t forget to help improve access to the arts!

If you haven’t already had your say and told the government how they can improve access to the arts for people who are Deaf/deaf, have a disability or mental health condition, now’s the time! Seriously, please don’t delay. This is SO important. We all have the opportunity to make a huge difference to the lives of so many Australians – let’s do it.

If you’ve only got five minutes, email Arts.Disability@arts.gov.au and say:

– Access needs to be built into all creative projects from the start, and this includes creation, promotion and presentation of arts projects. The government should fund this.

– Provide open captions for all public screenings of movies and laws to support this.

– Create an awareness campaign to remove the stigma, lack of respect, and discrimination experienced by people who are Deaf/deaf or have a disability or mental health condition.

If you’ve got more time, head to my blog post for more details:

 Here’s our chance to improve access to the arts!

Here’s our chance to improve access to the arts!

The government is working to improve access to the arts for those of us who are Deaf/deaf, have a disability, or a mental health condition. People, this is super-important! It’s an amazing opportunity for us to make a difference!

The government is not sure how to provide access, and they need us to tell them. They want to know everything about all the barriers and discrimination we experience in accessing the arts. The arts includes movies, books, theatre, multi-media games, fashion design and everything creative. You can fill in a survey or send them an email. You don’t have to be Deaf/deaf, have a disability or mental health condition yourself – the government also wants to hear from you if you are our friends or family members, or work with us, or want to work with us in the future.

As well as filling out the survey, I am sending an email which I have pasted below. I have outlined three things the government can do that I believe will make the biggest difference. If you feel these things will help us, please contact the government and let them know, or tell them what YOU think will help. The more voices they have, the more likely they will make the change, and the right change. Scroll to the bottom to find out how to contact the government.

Please pretty please, help let everyone know about this amazing opportunity by sharing this post!!

Dear Cultural Ministers,

Thank you for working to make the arts more accessible for those of us who are Deaf/deaf, have a disability or mental health condition. I am a professional Deaf artist who has been working in the field for 18 years. In this time I have experienced a significant amount of discrimination, and I have had to fight hard to become professional and overcome numerous frustrating barriers.

THE TYPE OF BARRIERS I HAVE FACED

Let me tell you about just some of the barriers I have experienced:

  • As a young performing artist, I could not find a professional company that would take me on as they would also have to hire interpreters and this was prohibitively expensive.
  • I decided to freelance and tried to get an agent. But no agent had confidence in me and I received no bookings.
  • I invested my personal savings to pay a friend to call festivals and events and tell them about me. I posted them my promotional material and started to receive bookings. Once they had booked me once, repeat bookings were easy as they loved my work.
  • I became a writer, had a book series published, and was invited to speak at writers’ festivals. However, I had never done this type of speaking before and I wanted to go and watch some other authors speak, so I could get an idea of what types of things they said. I could not access any author talks as there were no interpreters. So I had to make up my talk ‘blind’, without knowing the context. To this day I do not know how my talk sits in the context of others’ talks. I only know that I get repeat bookings.
  • I went to a writers’ festival and was invited to opening night networking and drinks. However, while the festival had hired an interpreter to interpret my presentation, there was no interpreter for the networking and drinks. I could not connect with others on the scene. I remain isolated as a writer.
  • At one festival, a writer who I am absolutely in awe of was presenting. I begged the festival to provide interpreters for her talk. I was told they would not, because the previous year they had a budget for interpreting but no Deaf people came, so they scrapped that budget and it’s not available this year. I thought to myself: maybe the Deaf people who didn’t come are like me – I don’t even look at programmes for writers’ festivals because it’s like looking at a candy bar full of lollies I am not allowed to eat. How would I know to look at that one festival’s programme?
  • I became a visual artist. I applied for a course in how to best sell art online. I emailed the teacher and asked if the course content was accessible. He said it was not. I asked if he could make it accessible. He said no. I asked if he would teach me privately. He said, ‘This course is not suitable for you.’ I sent him a long and persuasive list of my credits and experience and outlined exactly how I thought he could help me. He relented and gave my private sessions via type-Skype. He told me later I was among his best students.
  • I applied for another course and they said it was not suitable for me. I was ill at the time and felt too tired to fight. I gave up on that one. I often give up. I have to pick my battles.
  • I wanted to go to a film festival, but when I looked at the programme it didn’t say which sessions had captions. I called up and asked. I could book for a session with three movies, one of which had subtitles but the other didn’t. That would hardly be a fulfilling experience, so I didn’t go.
  • I wanted to go and see some shows at the Melbourne Fringe. But in past years the programme did not indicate which shows would be accessible to me and there was no central office I could call that would know which shows were suitable – I’d have to call up each show individually. I did not even get the programme nor look through it. Best to focus on things I CAN access.
  • My family and friends love to go to the movies. So do I. But I cannot go with them because they like to see new popular movies, and I can only watch foreign films as they have subtitles. So they go and watch the movies and talk about them and I am left out. Then a few months later I watch it by myself on DVD. I want to talk about it with them but they have moved on or forgotten – they are talking about this week’s movie.
  • NDIS, since it was rolled out, now provides me with some funding that I could use to book interpreters for events and pay for course content to be transcribed. This has been amazing and life-changing for me. However, my current plan gives enough funding for one booking (max 2 hours) per week. I have to choose between using this for a medical appointment, a social event, a cultural event, a fitness or creative class, or access to something I want to learn online. For the other 166 hours each week I am still without access.

Please help make this easier for artists who come after me, and for the rest of my career as an artist and my life as a consumer/creator of the arts. In this email, I outline the key things the government can do to make a huge difference to accessibility in the arts.

BUILD ACCESS INTO CREATIVE PROJECTS FROM THE START

Access needs to be built into all artistic projects from conception. Just as funding bodies require artists to present a budget and a marketing plan, so should artists be required to develop an access plan in order to secure funding. This access plan must be funded by the government, so as not to inhibit artists’ capacity to create. For example, arts courses, shows, movies, exhibitions etc should all be required to include captions, transcripts and visual information. Artists should be encouraged to think creatively about how to meet access requirements in an integrative and innovative way, rather than seeing access as something to lump on at the end of a project. Creators should ask the question: how will people who are deaf or have a disability or mental health condition access this? A guidebook needs to be made in consultation with Deaf/deaf consumers, those with all types of disabilities, and those with mental health conditions, that help artists and organisations understand how to provide access. Funding organisations need to fund this as a crucial part of the project.

Access needs to be incorporated at the promotional stage too, so that programmes routinely indicate the type of access provided/available to audiences. Booking systems need to be made accessible. For Deaf people, sometimes the barrier is small, such as that we are required by the computer system to enter a phone number but there is no box to check to indicate that that number is for text messages only, and sometimes the barrier is larger in that we are expected to make phone calls (cumbersome through the National Relay Service) or are required to book through a special organisation rather than through mainstream channels. People with other disabilities, such as those who are blind, face different barriers to booking. The guidebook needs to cover all aspects of creation, promotion and presentation of arts projects.

WE NEED ACCESS TO MOVIES

Movies are an intrinsic part of life for most Australians. Going to the movies is seen as a way to switch off at the end of a week, a way to ignite romance on a date, a way to get together socially with friends, and to celebrate the conclusion of a project or course of study. Discussion of new and popular movies is part of life. Deaf people are left out of this because most movies do not have open captions. There are so many barriers to the current Captiview system of providing access that it is useless. To provide true access, we need open captions to be displayed on all movies. Legisltation needs to force this to happen, as cinemas are afraid that they will lose audiences if they do this under their own initiative. Legislation needs to require that movies can only be imported into Australia if open captions files are provided too. Australian made movies must be required to develop captions during the production stage, as part of the funding requirements. Australians will quickly become accustomed to watching movies with captions. In European countries where the main language is not English, almost all movies are shown with captions, and they still experience a strong audience in cinemas. Perhaps cinemas could offer special screenings for those who oppose the use of captions in less popular timeslots (think Tuesday mornings ‪at 9am‬ – which is currently when we generally get to access the movies if access is provided at all).

I have focused here on Deaf access, as that is my area, but naturally access needs to be provided on all levels, audio descriptions included.

ATTITUDES NEED TO CHANGE

Peoples’ attitudes are a major obstacle. Art/creative teachers don’t want to go the extra mile to make their courses accessible to me. Agents are reluctant to take me on. Festivals are reluctant to book me. Professionals are nervous about giving me commissions and residencies. They don’t think it will be worthwhile, because they have never seen Deaf artists, performers and so on. This is a systemic problem, which creates barriers in the arts as well as in all aspects of society. In order to improve access to the arts, we need to change peoples’ attitudes. There are few Deaf people in positions of power and authority because licensing boards don’t accept us. It is a huge fight to become a teacher, a nurse, a doctor, a pharmacist and so on. Some people win, and many lose or give up. With few of us in role-modelling positions, the public doesn’t see us. They assume we are not in those positions because we lack the capacity to perform them effectively. This feeds into an assumption by the mainstream that we are stupid and incapable.

The government can address this firstly by placing new, stringent legislation in place that force organisations and licensing boards to stop discriminating. They can set up an organisation that we can contact when we experience discrimination, who will fight on our behalf to rectify this. Currently the legal system is inaccessible and ridiculously expensive. Fighting discrimination is impossible for most of us. The government should be doing this.

The government also needs to put in place initiatives to get Deaf people, people with a disability and people with a mental health condition into the top tiers of jobs in all professions, so that we can become role models and be seen in the public. When the public sees us in professional roles of authority, the stigma and fear surrounding us will be vastly diminished. They will come to respect us. This can mean extra support for education to help us achieve the knowledge and skills we need, as well as whatever support we need to fulfil the role given our limitations, and financial incentives for employers to take the risk in hiring us.

The government can create an awareness campaign, much like those we have had for drink driving and sun protection, to help people understand how to relate to us in an inclusive, respectful way. In Australia, even though many of us are not religious, we have a strong cultural understanding of the Ten Commandments as a kind of moral code that we are not to break. In Scandinavian countries, there is a similar cultural understanding known as Jante’s Law.

The laws are:

  • You’re not to think you are anything special.
  • You’re not to think you are as good as we are.
  • You’re not to think you are smarter than we are.
  • You’re not to imagine yourself better than we are.
  • You’re not to think you know more than we do.
  • You’re not to think you are more important than we are.
  • You’re not to think you are good at anything.
  • You’re not to laugh at us.
  • You’re not to think anyone cares about you.
  • You’re not to think you can teach us anything.

When I go to these countries, I am treated with respect and not discriminated against to the extent that I am here in Australia. I believe it has to do with the cultural foundation that was built on these laws. People who believe in Jante’s Law cannot look at a person who is Deaf or has a disability and assume they know more than us, are smarter than us, nor are better than us at anything. Instead, people relate to me as though I am more skilled and knowledgeable than them, just as they do with everyone in their culture. I mention this because cultural understanding and awareness is critical to how we are related to and treated. I don’t believe Australia should adopt Jante’s Law. But I do believe that a strong awareness campaign that promotes respect for the skills, knowledge and insight that people who are Deaf or have a disability can bring to our community would make a huge difference.

Much of the stigma I face from individuals and organisations that deny me acess is due to a lack of awareness, fear and uncertainty. By providing an awareness campaign about what it means to be Deaf/deaf and how people should relate to us and include us would be very helpful. Obviously this is needed for those with other disabilities and mental health conditions too.

WHY I NEED ACCESS TO THE ARTS

The art is the most important part of my life. It brings me great pleasure and keeps me sane, as well as earning me an income. I am a voracious reader and always have a book on the go, and have written numerous books myself. How I wish I could access networks of authors. All types of craft – knitting, sewing, art journaling, drawing, painting, mosaicing, sculpting and jewellery making (to name just a few) are activities I do for fun. Spending time making things with my hand brings me peace and calmness in a way that nothing else can. Learning the skills to do these are crucial to my enjoyment, as is accessing and becoming inspired by creations made by others. Dancing and circus skills keep me fit and healthy and again I love to participate in classes for these. When I go more than a week without being creative, I feel depressed and life does not feel worth living. I know that I need to be proactive in staying creative, for my mental health.

Many thanks for considering us and being prepared to make a change. I am happy to be contacted to help make a difference in terms of designing suitable campaigns and law changes and an access handbook for artists.

Many thanks for considering us and being prepared to make a change.

Yours faithfully,

asphyxia-signature.png

Asphyxia

 

WHAT YOU CAN DO

  • Fill in the government survey:
    People who are Deaf/deaf, have a disability or mental health condition click here.
  • Carers, family and friends of the above group click here.
  • Organisations who work with or want to work with the above group click here.

Email Arts.Disability@arts.gov.au and say:

• Access needs to be built into all creative projects from the start, and this includes creation, promotion and presentation of arts projects. The government should fund this.

• Provide open captions for all public screenings of movies and laws to support this.

• Create an awareness campaign to remove the stigma, lack of respect, and discrimination experienced by people who are Deaf/deaf or have a disability or mental health condition.
If possible, give examples from your own experience to support these three ideas. Tell stories about what happened when you tried to access something and couldn’t, and how you felt about it, and how it affected those around you. Let them know why it is so important for us to access the arts. Share your email online to encourage others to have their say too.

You can also make your submission public or upload a video of yourself signing in Auslan – see here for how to do that.

For more info from the government, read here.

Please encourage those around you to have their say as well – share this post to let everyone know about this amazing opportunity to MAKE A DIFFERENCE!!!

Ever thought of raising your own meat on a city block?

I was vegetarian for 20 years. I’ve never had anything against people eating meat, though I’ve always thought it would be most ethical to raise the animals yourself, and probably kill them too. When I started to eat meat again for health reasons, I decided to put my money where my mouth is, and raise and kill my own meat. I felt that way I would truly understand and appreciate the animal I was eating.

There are other reasons why I believe it’s good to raise our own meat. The meat industry can be pretty cruel. I only eat meat from local farms where I’m pretty satisfied that they raise their animals well and kill them humanely. But even so, surely I could give them a better life in a suburban backyard than when they are raised on a commercial scale. After all, our home-produced eggs were so much better than the most expensive organic free range eggs we could buy. Like the eggs, I expected the meat to be more nutritious. Also I am concerned about the amount of wastage that occurs commercially. Despite repeated requests, I’ve never been able to obtain chicken heads or feet for soup. What happens to them all? Are they chucked out? We are in the habit of eating the muscle meat but not the organs (though they are very good for us), and in our society it’s rare to make stock from bones these days. By processing my own meat I could ensure minimal waste.

I also want to really understand how much food I could produce in my backyard. I already produced 80% of my family’s fruit and vegies. Could I produce a good portion of our meat onsite too? I wanted to find out.

I’ve blogged about my journey raising chickens for the first time.

https://helloasphyxia.wordpress.com/blog/living-sustainably/raising-chickens-for-meat/

Nightmare

It has been almost two years since I moved out of the house I built myself. In one fell swoop, I lost my health, my home, my partner, my son, most of my larger extended family, most of my friends, and my financial security. My life has had a nightmarish quality to it, as I have struggled to adjust. I kept thinking I would wake up and find myself in the familiarity of my old life, to Jesse slipping into my bed for a morning cuddle. I have been homesick for not just my home, but my life.

I am adjusting now. In many ways my new life is better. Except for the thing that matters the very most: my beloved son is not with me. In that way the nightmare continues, day after day after day.