Not buying much

I’ve had several periods during my life when I’ve made a real effort to reduce my spending on consumer goods. Buying stuff is bad for the environment, and it’s not good for the wallet either. Almost everything we buy used electricity to make it, used ungodly amounts of water, contributed to water and air pollution, came in packaging that will go to landfill, was often shipped here from another country, driven to our city on a truck… you get the picture. Much of what is available in shops in Australia is also made by people working in miserable conditions. Every time we buy something, we are sending a message to the manufacturer saying “Great – please make another!” And just as we need to reduce our electricity use by turning off lights when we aren’t using them, and unplugging appliances at the powerpoint, we also need to reduce our “virtual” use of resources – that is the resources used to manufacture the things we buy. If this seems obvious, my apologies – it took me quite a while to “get” this particular point, and to connect my buying as clashing with my desire to live sustainably.

I read a great book called Affluenza, which examines the way we spend our money in Australia, and it included quite a few tidbits of eye-opening information for me. The authors point out that the government says we’ve had a good year if we’ve experienced economic growth – that is, if we as a society spent more money than we spent the year before. The only measure of “success” is this – financial – there is no attempt to measure wellbeing, health, contentment or other indicators of a successful society. Similarly, on a personal level, most Australians aspire to financial growth – ie to earn more than we do currently, to own more or more expensive stuff, and to move into a bigger house in a better area when possible. This attitude that “growth is good” forms the backbone of our lives, for most of us.

The government and the marketplace work hard to establish this attitude and keep us operating this way. Much of the message is achieved through advertising. Advertisers, rather than giving us factual information about a product, strive to make us feel discontent with our current situation, and aim to build anxiety and uncertainty, which leads to buying more.

Interestingly, although most Australians believe our society is too consumerist and too materialistic, most of us believe that we as individuals are not, and that we have barely enough money to meet our basic needs. This holds true regardless of how much we earn: most Australians have come to see luxuries as basic necessities, and we deny that our purchases are materialistic. Advertisers capitalise on this, by telling us “You deserve it”, whether it’s a holiday we can’t afford or a fashionable piece of clothing.

When large corporations worried that we might stop spending, they introduced the credit card, so that we could spend money we hadn’t even earnt yet. The convenience of the credit card has led to a culture of instant gratification, which will have to be paid for later. Australians pay for their debts by working longer hours than workers in any other country in the world. These long work hours are causing individuals numerous problems – relationship breakdowns, children who long for more time with their parents, depression, fatigue, ill health, and an obsession with money. Even though most Australians would like more time with their family and friends, this goal is often deferred until later in life (generally retirement), while long hours are put in now to pay for luxurious “basic necessities”.

Almost one quarter of Australian adults, however, have decided to step outside of this cultural model, and “downshift”. Lacking public role models for this, we each operate in isolation, often with the disapproval of those around us, despite the fact that so many of us are doing it. Downshifting means working less hours, working for less pay, and/or consciously consuming less than before. While the income drop can be challenging, especially at first, 90% of downshifters end up with less stress, more time for meaningful activities, better community networks and participation, less anxiety – and the obsession with money generally melts away.

That, in a nutshell, is what I understood from the book. Wow – one quarter of us are downshifting – and there’s no mention of it in the media or anything to help us realise how common our actions are. My readership on this blog has skyrocketed since I started blogging about living sustainably – so it seems there is interest out there.

After making a strict budget for myself for consumer goods one year, I found I didn’t want to spend it on things like socks, undies, watches and so on. So my biggest challenge was to find a way to meet as many of my basic needs as possible in a way that doesn’t involve buying anything new. Op shops meet a lot of my needs.

A few tips for not buying stuff:

  • stay out of shops and shopping centres.
  • don’t read magazines (or if you do be very strict and avoid looking at the ads).
  • don’t watch ads on TV.
  • if you catch yourself fantasising about various new things you might like to own, try to nip it in the bud and think about something else.
  • focus on being happy with what you have, and making do with stuff you have on hand or can find.
  • go to op shops and maintain a running list of items you are watching out for.
  • try borrowing from a friend instead of buying.
  • make stuff (from second hand materials), and give gifts that are homemade or provide an experience or service (a gift voucher to a restaurant, to a bath house, a massage voucher). Or give plants, ideally some you’ve raised yourself, preferably in a pot you didn’t buy new.

And a few tips from readers:

  • make use of your local library rather than buying books
  • take a good look at why want to shop – are you avoiding something or trying to fulfill an emotional need?

Please send in any more tips!  Thanks to those who already did.  Read the comments for more insights 🙂

So what about you, is there anything you’re not buying? Have you found any solutions for the ordinary, every day things we “need”?

Royal commission into violence, abuse, neglect and exploitation of people with disability

I found out just a few days ago that there is a royal commission into violence, abuse, neglect and exploitation of people with a disability. Making a submission to an inquiry is an excellent way to instigate change because the powers that be are actually listening. So I decided to make the effort to write a submission. I’m posting it here in case you’d like to read it. If this inspires you to write in something, please do, as they are accepting submissions until 12 September. It doesn’t have to be as lengthy as mine. Even one short description of an issue that bothers you makes a difference. Or send a link to this post and tell them it matches your experience. You can email them or send an Auslan video if you prefer. I hope that reading my submission will inspire you to make some small changes that will help make the world more inclusive for Deaf people. Here’s my submission:

I am a Deaf woman who communicates using Auslan. For me the biggest barriers to inclusion are peoples’ attitudes, lack of knowledge about our rights, and the fact that Deafness tends to be a forgotten/invisible condition.

Deafness is forgotten

As an example of how we are forgotten, the train station closest to where I lived for 20 years has rubber strips on the ground and braille on machines for blind people, and it has ramps for people who use wheelchairs, but there is no accomodation for Deaf people. To find out when the next train is coming or other information, one must press a button and listen. It is clear that efforts have been made to ensure the station is accessible but it seems the efforts did not include Deaf people.

Here are some more ways in which we are forgotten:

The emergency department of the hospital closest to me has an intercom in order to access it late at night. One time I drove a friend to emergency at two in the morning. I left my friend in the car while I went to get hospital staff, but was unable to talk with them through the intercom to explain what was needed. It was very stressful. I had to get my extremely ill friend to come and handle the access side of things! It means that it is difficult for me to be a good support person and carer when the need arises, as I am actually more of a liability on the person I am attempting to support!

For quite a time I lived in a small town, and the police station was not staffed around the clock. They have an intercom that connects people to the police station in the next town. So if I went to the police, I could communicate with them!

When filling in forms, it is routinely required to give a phone number, but there is nowhere for me to tick to say that this is for text messages only, no voice calls. 

When deliveries of parcels are made by courier or postal services to my address, sometimes they will call me to clarify about when they can deliver or where to leave the parcel. It doesn’t occur to them that I might be Deaf and cannot take their call. When entering phone numbers on parcels there is no box to tick saying that I am Deaf and to contact via SMS.

The support departments of numerous organisations can only be contacted by phone, and will only deal with me by phone call. We live in an era where email is prolific but many organisations refuse to deal with me by email. For example, the ATO, Centrelink and more. I use the national relay service (NRS) to call such organisations but I am frequently on hold for a long time, and the chance of the NRS cutting out before the call is complete is high. Even then, I can’t convince the organisation to start the conversation by email. Organisations regularly ask me to call them and it doesn’t occur to them that I might be Deaf – it would be better if they said, ‘please call or email,’ and then provided email contact details as well as phone details.

Given how we are forgotten, I assume there’s a high chance that contact-tracers for Covid-19 will not consider the possibility that the person they are trying to contact is Deaf. Usually when people call me voice on my phone I ignore it, because the alternative is to hassle someone into ‘helping’ me and usually that is intensely frustrating. I will talk about that further below. However, now I am worried that a covid-19 contract tracer will try to call me and so I have started getting people to answer the phone when it rings, leading to a large amount of stress. If only I could be confident they would send a text message as well as attempting a voice call.

The frustration of a phone call

Even organisations that are supposed to service us, such as NDIS, do not seem capable of Deaf-appropriate practices. As part of the approval process to get a plan with NDIS, I sent them my audiogram, showing a profound level of Deafness, which they passed on to a doctor for verification. This doctor called me on the phone to confirm that I am deaf! Any doctor who knows anything about deafness would have glanced at my audiogram and known that a phone call was fruitless. Why this person was considered qualified to assess whether I really am deaf is beyond me. It astounds me that this person did not remember that Deafness = difficulty on the phone. 

Now to explain the stress involved when hearing people call me and I need to ask for help from others to handle the call. On this occasion, I handed my phone to a friend who told the doctor that I was deaf, and unable to speak on the phone. The doctor spent several minutes trying to convince my friend to put me on directly, then finally accepted this as ‘confirmation’. For some strange reason, this bizarre encounter was required, despite my sending in an audiogram signed by a professional audiologist and confirmed by my GP. The friend on hand that day was not a qualified interpreter, and didn’t know how to assist communication between me and the doctor. Instead she spoke to him on my behalf and I don’t know exactly what was said! This is hardly an inclusive and respectful way of handling my affairs. It also didn’t afford me any privacy – I didn’t know it was an NDIS doctor calling at the time I handed the phone to my friend, and the conversation had gotten quite out of hand before I even know who was calling and what it was about. I consider details about my disability and NDIS funding highly personal and private. By calling me on the phone instead of contacting me in a Deaf-friendly way, the doctor set up a breach of my privacy.

Now for another example regarding phone calls. When I had an issue with accessing my NDIS portal, I used a professional interpreter to call NDIA (the organisation that administers NDIS), to ask for some technical assistance. The person I spoke to refused to put me through to the IT department and said someone would call me back. I explained that as I am Deaf, I would need the person to email or text me. Although I had an interpreter with me at that time, she would probably not be present at the time the call was returned. The person assured me that a member of IT staff would email me promptly.

The following day, my phone rang. Thinking it was likely a different organisation, I handed the phone to someone nearby and asked her to say that I am Deaf and so please email me, but unfortunately it was NDIA IT department. I gathered the response was that they are unable to email outside the department, so that was impossible. I attempted to reply, ‘We are living in the 21st century, and presumably you, as an IT specialist, have access to a phone with email on it. You could use that phone, even if it is your personal phone, to send me an email, since your company clearly has not made accomodation for the possibility of needing to contact a Deaf person.’ But the person holding my phone did not relay what I wanted her to say. I think she felt uncomfortable about being so sharp.

The phone call was lengthy and highly frustrating as I kept saying things that were never passed on. By the time the person on the other end said, ‘How wonderful that your friend was there and could help us resolve this!’ my blood was at boiling point from anger and frustration.

For me it was not wonderful at all. I want to handle my own affairs myself, and to communicate directly with the people involved, not via unqualified interpreters.

By the time the call had ended I was angry with the person who had accepted my phone, for not passing on the things I was saying, but it was not her fault – she was just trying to be helpful. When NDIA refused to allow deaf-friendly methods of communication, they created a rift between me and the person helping me.

The government provides us with the national relay service (NRS) for phone calls. While it has been life-changing to be able to make calls independently through the NRS, this is not a solution for me for phone calls in most circumstances. There are a number of reasons for this:

  • First, often when I want to make a call, the relay service will be busy, so I will be put on hold for a period of time. For time-critical calls this makes a problem.
  • Calls through the NRS take MUCH longer than voice calls and so take a significant portion out of my day, which is why I always get a professional interpreter to make calls for me if possible.
  • Another issue is that the NRS frequently disconnects before the call is complete. When I have been on hold for a long time and been transferred through multiple departments and am finally making headway with an issue, for it to suddenly cut out and have to start again is devastating.
  • The biggest problem for me with using the NRS is the time lag between rounds of communication. I type what I need to say to a person, and then I have to wait for their reply and the relay officer to type it out. The wait can be quite lengthy. There are also significant waits if I am on hold. If I sit there and stare at the screen while waiting, I go insane with boredom. Therefore, I need to do something else while I wait. That means my eyes go elsewhere. Unfortunately, I can never remember that I am on the phone for an extended period of time while I engage in another activity. There is no auditory sound to remind me to check the NRS window for activity. When I was younger I could remember to check all the time, but now I am older my brain doesn’t work as well and I simply don’t remember. So, over and over again I start calls to organisations, get put on hold, forget I am on the phone, do something else for too long, then suddenly remember about the NRS call and realise it’s far too late, the person answered and then hung up because I didn’t respond! Hearing people don’t have this problem because they hear music while on hold and when the music stops it catches their attention. Or a person speaks and they hear it.

NDIA – lack of cultural appropriateness

I know a woman who was an Auslan interpreter with a deep knowledge of the Deaf community, who became an LAC for NDIA (the LAC is a case manager for clients who are Deaf or have a disablity). I was very excited, and told her how wonderful it would be if she worked with Deaf clients because she would automatically contact them in appropriate ways, would not ask stupid questions about Deafness, and would understand already the types of barriers we face in everyday life. She would also be able to sign directly with clients so that the appointments could be entirely in our own language rather than conducted via an interpreter.

But unfortunately she told me that NDIA will not allow her to work with Deaf clients because they will not have case managers who know the clients personally. As someone who had worked in the Deaf community for many years, the ex-interpreter knew them all. And this is the catch-22: if there is someone involved in NDIA who truly knows about Deafness and Deaf culture, chances are we know each other already. It is so wrong to prioritise anonymity over our cultural needs. In the Deaf community we do not have the luxury of anonymity, much as I and others might like it. It is vitally important that we work with people who actually understand us.

Dealing with the medical profession

Attitudes towards Deafness are a major problem for me. While they are systemic in every aspect of our society, examples from the medical profession are perhaps a good way to highlight them.

Recently I have had to see three different new doctors due to an anomality in my iron studies blood test. Every single doctor, instead of focusing on my iron issues, spent an inordinate amount of time discussing my Deafness. They wanted to know when I became Deaf, and why. They wanted to tell me how well I speak (even though I was not speaking during the appointments), and marvelled over the amazingness of Auslan, and asked questions such as why my interpreter had become an interpreter, and so on. I am accustomed to being told my time is up during medical appointments before I have finished with my questions to the doctor, and I really didn’t want to waste time on this. I felt that if I cut the doctor off and insisted we focus on the task at hand (my iron studies!) then I would come across as rude, which is not a good first impression to make when I am trying to establish a relationship with a new doctor. So I tried to strike a balance between being polite and friendly while at the same time cueing them to pay attention to my medical issues, not my Deafness. This is irritating in the extreme as I spend so much of my life fielding questions about my Deafness, and now I feel aggravated and stressed if I am asked to see a new health professional. Eventually I found a way around this by connecting with an old friend (formerly an Auslan interpreter) who lived interstate, who had become qualified as a GP. We had appointments via Telehealth where we discussed my medical issues, not my Deafness. However, he then informed me that he had been notified that Telehealth is only a temporary measure during Covid-19 and that we will soon be required to have in-person appointments again. I can see this particular solution closing off to me in the near future. 

Before Covid-19 hit, I was seeing a psychologist. Due to the fact that I know all the interpreters in my area, and I wanted my sessions to be confidential, I decided to do the sessions directly and see if I could lipread and speak during the appointments. She had to repeat herself a lot but overall we managed to make communication work. Then with Covid-19 I was informed the appointments would now be via Telehealth. However, when the time came for the appointment, the clinic had not emailed me connection details. I was emailing them, and meanwhile my phone was ringing. As you know I don’t usually answer my phone when it rings, and I didn’t have anyone with me who I could have asked to answer it as I had planned to be alone for the appointment. 20 minutes into our session, the clinic finally emailed me details and I connected online. However, the time lag between video and sound and missed frames meant that lipreading was impossible. I had anticipated this and had an Auslan interpreter on stand by. However, the connection was poor and I could not understand the Auslan interpreter either due to freezing of images and other technical problems. About 40 minutes into the session we cancelled her involvement. For the remaining 20 minutes, the psychologist and I attempted to communicate, which was pretty futile, and made worse by the fact that she kept talking to herself, seemingly oblivious that trying to decipher every word was giving me a major headache, and making me unnecessarily work on words I didn’t need to decipher was a waste of my effort. I asked her if she could type what she was saying but I did not understand her response. No typing occurred. Somewhere in there she let me know that it was she who had been calling me on the phone, to have our appointment. I was astonished – had she not grasped at any of our previous appointments that I was Deaf? We only managed a few successful communication exchanges about emotional topics, and then she informed me it was time to end the session.

I contacted the clinic to ask about the access policy, and asking if I could have longer sessions to compensate. They cited Medicare as their reason for refusing this. I quoted from the disability discrimination act indicating that it was the responsibility of their organisation to take steps to give me the same level of access as a hearing person would have.

I also passed on resources I had found online published by Metro Health South in Queensland with specific guidelines for mental health practitioners working with Deaf clients – one of their suggestions was to allow for longer appointments. The clinic responded that they had sought the advice of NRS, and that they had excellent news: the NRS had advised them to conduct my psychology appointments through the NRS! If you have read my issues with the NRS above, you will know already that this is not a suitable platform for me to have psychology appointments! It would be against the law for a relay officer to do a psychology session as they would not have the appropriate qualification. The clinic ignored the resources I provided as to how to best provide access.

I no longer felt that my psychologist had any rapport with me, any understanding of my Deafness or barriers I face, nor caring for my plight, and felt there was no point attempting to continue the fight for access, so I abandoned the effort. I felt exhausted by the need to advocate for myself, frustrated by the fact that my efforts at advocacy went unheard, and I experienced a significant mental health crash due to feeling like a nuisance and the disappointment of realising that it seemed my psychologist did not actually care about me. It would have been better for my mental health if I had never had any psychology appointments at all to begin with.

The challenge of taking classes

Only a week later, I ran into another problem with regards to the painting class I was enrolled in for professional development. While the teacher had already moved his classes online, he refused to have me in his online class, and the excuse he gave implied that it was because of my Deafness. He said he would have me in his class later when we were back to in-person classes.

I had also made the request that when he wants to demonstrate something, he talk and then demonstrate. This is because I would need to look at him to lipread or look at the interpreter to watch their signs, and thus would not be able to simultaneously watch him paint or point. So he would need to alternate between talking and painting. He told me that this would be far too time consuming and thus was impossible.

I ended up cancelling my enrolment in the class, and felt bitterly disappointed. Meanwhile a friend who was also enrolled was easily accepted into his online class, which rubbed the exclusion in my face as I watched her do the classes each week. Not only that, but I was particularly galled to note that during the term he did only a single demonstration of ten minutes! It was clear that the teacher did not want to have to think about inclusion and simply preferred to get rid of me.

I wish I could say this was a one off situation but I have encountered it repeatedly since leaving school. Sometimes I battle hard, advocating for myself and my rights and doing my best to sell myself to the teacher and convince them it is worthwhile teaching me. Usually it fails. Once it succeeded. Now I just feel so angry and exhausted that i would rather not even try. When I hear about classes these days I just think that I can’t face the likely upcoming battle.

Barriers to careers

When I was a young circus performer, I contemplated joining a professional circus company, but none were able to afford to provide the interpreting support I would need to be included. I tried to get work as a freelance performer by registering with agencies, but although my friends were successful, I was not. I think the agencies did not have confidence in me so didn’t put me forward for jobs. I had to spend my own savings to pay someone to call festivals for me (this was before email was widespread) and promote me. I got bookings this way, including repeat bookings, and slowly my career grew. I ended up running my own theatre company which toured nationally and internationally with a successful show of my own creation. It was no accident that I ended up working for myself. No-one else would have me. Most Deaf people I know do not have the right personality to run their own business – it takes a particular kind of courage, organisation, self-accountability and discipline that is not especially common. There are further barriers, such as not having the confidence to spend their own savings, or not having the required savings to begin with, nor a job with which to build those savings.

Licencing boards for many careers actively discrimminate against us. I have had Deaf friends knocked back from careers as a pharmacist, teacher and nurse. In all cases the licencing boards refused to give them a licence, despite their excellent skills and results when graduating from study. Some people have fought with the relevant boards and ended up settling rather than with a career. Others have fought hard and eventually succeeded, after long and exhausting battles. Assuming they can get a licence, the next hurdle is the attitude of people working in the relevant industry – who often don’t have confidence in the idea of a Deaf staff member. Most Deaf people I know end up either working for a Deaf organisation for low pay, or working in a menial job, also for low pay, where they are unable to climb to higher positions. To make this especially painful, it these barriers are not spoken of to young Deaf people. They certainly never were to me nor many of my friends. Hence, Deaf people waste valuable years of their lives studying for careers that they will never be able to have. Realistic pathways are not set out for us.

Watching movies

When I grew up, I did not watch TV, because there were no subtitles. My family used to go to movies, and there were no captions and I was bored, but I still wanted to go because I wanted to be a part of my family. When I was an adult and still with my ex-partner and son, the two of them would go and see new releases that I was excited to see too, but I didn’t go with them because I knew I would find it too frustrating to not understand what was going on. Later, when the movie came out on DVD, I would sit and watch it alone. Although the two of them had enjoyed discussing the movie after seeing it, by the time I saw it and was ready to discuss it with them, it had faded from their memories.

Eventually captiview was introduced, or ‘craptiview’, as we call it, in the Deaf community. This is supposed to tick access for us by providing a device that gives us closed captions, while other movie-goers are freed from the supposedly onerous task of having to watch a movie with open captions on the screen. I will point out here that when I was in Norway, almost all the movies came from other parts of Europe, and hence were shown at cinemas with Norwegian open captions. (Open captions means the captions are shown on the screen and everyone sees them. Closed captions mean that the captions are provided in a way that only Deaf people access them.) In Norway, movies were as popular as they are here, so I gathered that the public will accept open captions and still embrace movies, if they have to. I long for Australia to require open captions for movies – there could be special sessions without captions (perhaps on Tuesday mornings at 10am) for people who object to the captions.

I wrote a blog post in 2016 about access to open captioned movies, which you can read here to understand the issues involved with open captions and ‘craptiview’.

Watching TV

Since the advent of Covid-19, I have started to watch the ABC news, via Apple TV. Although the news has closed captions, which I have set to be switched on, there are numerous technology problems with this:

  • The live-stream news almost never has captions that work.
  • Therefore I need to wait until the segment has been loaded as an individual episode, in order to watch it, but the captions are never loaded immediately – for some reason they don’t become available until about an hour after the live news, so I have to watch quite late.
  • Sometimes the captions don’t work on the news segment I want to watch, so I have to compensate by watching news from another state instead. Sometimes I surf state after state before I find one that works!
  • The captions have an extreme lag time – so much so that I watch the action on the screen while reading the text belonging to the action a whole scene ago, and then I have to try and read this while simultaneously remembering the current picture so that I can mentally sync it with the text when the text finally appears. This is so exhausting that often I would rather not watch.
  • The captions have so many errors that in addition to the mental gymnastics I am already doing to cope with the lag, I have to do further mental gymnastics to try and work out what the ludicrous sentences say.
  • This is compounded when I do succeed in watching live-stream news, because behind the captions there is often rolling text with breaking news – the combination of text overlaid over text and the scrolling adds an immense strain to my brain to try and distinguish the two.
  • I would have thought that given the fact that I am watching the segment a whole hour after it was published, the captioners could have used that hour to sync up their captions and correct the errors. I understand the lag is necessary when something is genuinely live stream, but I almost never watch it live-stream due to the subtitles not working live!

I emailed ABC to raise these issues with them but they never got back to me.

Now on Sunday nights, if I watch the live-stream news at the right time, I can see an Auslan interpreter on the screen. I LOVE this – it has been so unbelievably good to see Auslan on the screen. The news is very fast though, and I watch the interpreters signing unnaturally fast to keep up. This is a bit hard for me to watch, especially if the topic is one I am not familiar with. At the end of the segment is 5 minutes of news for the Deaf community. It is presented by a Deaf person, in Auslan, at a natural speed, in a style that explains issues clearly and appropriately for Deaf people. This is a highlight of my week. I cannot even begin to express how thrilling it is to see my language on the screen, to be able to watch in a relaxed way as someone explains the news in a format that is clear and accessible to me – no brain gymnastics required. The analogies given to explain news concepts relate to the Deaf community, unlike analogies given at breakneck speed by the interpreter, which are much harder to figure out. Seeing actual mentions of my own community on the screen has brought me to tears. It is such a relief. It is confirmation that we exist, we matter, we are important enough to be considered on the news.

Despite this incredible highlight, it strikes me as extremely sad that I can only access 5 minutes of this per week. I would like to watch all the news, every night, presented by a Deaf person, in unhurried Auslan, with references to my own commmunity. Come to think of it, this is what hearing people get, not only with the news, but every time they turn on the TV. They get shows in their language, reflecting their community, their lifestyle, their people and customs and ways. We get… five minutes. And to add insult to this, for some reason I cannot figure out how to access it after the live-stream. It doesn’t seem to be published anywhere. How I would love to watch that five brief minutes twice, if only for reinforcement that we really exist.

I am so hungry for movies (and books!) that depict Deaf people and sign language, preferably Auslan. (Sign language is not universal – America has its own sign language which is very different to Auslan and I don’t understand more than a few words.) One night a Deaf friend and I searched Netflix for movies with sign language. We found MVP: Most Valuable Primate which features a little girl and chimp who sign to each other… using gibberish! Yes – made up sign language! Not even American sign language! We were soooooo disappointed. I have only once watched a movie in Auslan, and it was about ten minutes long, and I saw it about 15 years ago. How I long for movies in Auslan. When I was 19 I watched Children of a Lesser God (American sign language), and this was the first time I had ever seen sign language in a movie. The character was so strong and proud of her own Deafness, I was blown away. The movie was life-changing for me.

Imagine the effect on Deaf people if we could see movies and storied depicting our language, our culture, our lifestyle, and the barriers we face! How I long for this… with every part of my being.

As I am a writer, not a movie-maker, I decided to write the book I wanted to read. The book is coming out in October this year, published by Allen and Unwin – Future Girl, featuring a Deaf protagonist. If you want an insight into the barriers faced by Deaf people, and the incredible value of the Deaf community, read it. It will help with your inquiry. It demonstrates how the media can be used to put foward our stories in a valuable way that are both educational to hearing/able bodied people, and validate our own lives and experiences.

How can we change

Remember Deafness

This means when you make or update something, whether it is a service, a form, a website, a product, a building or a course, you ask the question:


This needs to become normalised. We need a huge campaign to get people to change their approach to start incorporating Deaf access. The more people who do it, the more forms there are that allow you to tick that you are Deaf, the Auslan interpreters and open captions there are, the more others will think to do the same. A campaign to kick start this, and having the government lead the way, would be excellent.

Eliminate the phone call

With the enormous amount of technology available to us today, it should never be essential for Deaf people to make phone calls. It needs to become normalised that phone calls are not expected of us. Organisations such as Centrelink, NDIA and ATO as well as telecommunications service providers, energy service providers, banks and so on all need to establish Deaf-friendly ways of communicating with clients via text-based means such as email, SMS and instant-messaging. This will be valuable not only to Deaf people but the numerous hearing people who hate making phone calls or don’t want to be put on hold for lengthy periods of time. To lead the way, rules need to be established with a date by which organisations need to make the change.

Create an advocacy service

Create an advocacy service with case managers. Then people like me who are exhausted from self-advocacy can contact them to ask for help in dealing with people who refuse to provide access. This advocacy service could provide you with valuable information about issues that arise, and thus provide ongoing advice about legislation changes and programmes that would be most helpful to mitigate the need for their service. This will need to be a LARGE service with a lot of case managers to begin with. But hopefully over time, if their advice is followed, they will eliminate the need for their own organisation.

Create a Deaf department within NDIS

Since it seems to be too difficult for NDIA to train all staff in Deaf appropriateness (which would be ideal), an alternative would be to create a Deaf department. We have different needs than other types of disabilities – different communication needs, different language needs, different cultural needs. So make a department especially for us. Employ a Deaf person as the head of the department and listen to them when they advise how to make your organisation Deaf-appropriate. Hire multiple staff from the Deaf community to work in this department. Any client who registers as ‘Deaf’ or ‘deaf’ should automatically be allocated to this department for any contact with the NDIA.

Instilling better attitudes in people

How can we help people like my psychologist and the teacher of the painting class I wished to join develop a more inclusive attitude? Having our rights legisltated doesn’t really make a difference in practice. I believe the following strategies would be effective to enact widespread change:

  • Start young, at school. Children need to receive an education, at every year level, that fosters positive, inclusive and empathic attitudes towards us. This is best developed through real life examples – teachers who are Deaf and have a disability would provide strong role models and would be well placed to help children build appropriate attitudes. The way staff respond to students with a disability sends a powerful message too. Stories, films and documentries that develop empathy and insight are critical.
  • It is difficult for a person to understand the damaging consequence of their non-inclusive behaviour when they never see how it affects the person involved. Thus, we need stories in the media. Films, books, documentries that demonstrate exclusion and the consequences, as well as showing viewers alternative behaviours and providing role models are critical. These need to be incorporated into mainstream media, not sideline projects. As an example, since same-sex marriage was legalised, the change in the media has been striking. There are now casual examples of LGBTIQ characters and relationships portrayed in mainstream films, TV shows and books. Before the legislation, LGBTIQ characters were mostly only included in niche material. This has helped to normalise LGBTIQ experience. If we make the same change to incorporate the stories of people who are Deaf or have a disability, the effect could be very very powerful. Note here that it is essential that people with the actual disability need to be consulted and used as actors, writers etc in the development of this media, to ensure authenticity.
  • Nothing fosters respect like seeing people who are Deaf or have a disability in positions of authority. We need roles in parliament, we need to become teachers and doctors and nurses and school principals and lawyers and CEOs and actors (as per the previous point). Right now the barriers to these positions are insurmountable – we don’t have these positions because current attitudes prevent us from gaining them, not because we are incapable. So programmes need to be developed to help us get there.

Legislation and funding guidelines can help achieve these items

  • Start with the school curriculum and make changes.
  • Require licencing boards to develop Deaf and disability-friendly policies.
  • Provide funding for films and books only if they include a character who is Deaf or has a disability, and provide the additional funding required for the sensitivity checks and the support that will enable the Deaf and disabled actors and consultants to fulfil their roles. Encourage media that not only includes a Deaf/disabled character but that highlights real life issues experienced by that group.
  • Create a specific well-funded programme that aims to help Deaf/disabled people gain employment in positions of authority. This may involve case managers for young people who advocate for them, guide them, and ensure they have sufficient support to perform their roles.
  • Require cinemas to switch on Open Captions upon request.

One more thing you can do

Fix up the ABC in terms of access. Ensure that access is working properly on ALL platforms! Have the captioners stay behind and fix their errors and sync up the subtitles after the live-stream, for anything that will be published on TV.

What is it like to be the only Deaf person at a social event?

This is one of my favourite artworks. It hangs above my bed. It’s not that I don’t like socialising. There is nothing I love more than an intense, in-depth catch up with a good friend. But what I hate with a vengeance is going to events filled with hearing people who can’t sign, and being expected to somehow enjoy myself, while forbidden from doing any activity that is actually enjoyable.

Don Grushkin captured the problem exactly in his blog post about how boring it is for us.

‘Don’t dare bring a book or watch tv instead.  That’s “rude” (but it’s not rude to basically exclude a person who is supposed to be there?).  Don’t bring a Deaf friend to chat with and have the temerity to not use your voices to chat with them, thereby depriving the hearing people of knowing what you two were talking about (even though we have been sitting there among you, and nobody checks to make sure we know what they’re talking about).’

Countless times I have brought along a book, only to be told how rude it is for me to sit at the table in a restaurant reading. Tired of dealing with this accusation, I have branched out. I bring knitting, hand-sewing, or drawing instead. Then I am branded (somewhat unkindly) as weird or nanna-like. I try to wear the badge of weirdness proudly and just stick at it. But wouldn’t it be nice if it was socially acceptable instead?

One time, after spending all day with a group of hearing people, and wandering off for a cry, I was fetched back by someone who noticed I wasn’t handling things too well. We set up my phone and keyboard at the table and she typed for me some of the jokes people were sharing. I started to understand why they were all having such a rollicking ball while I was swallowing back tears. I felt a bit guilty about the effort this woman was making on my behalf, so to make it more worth her while, I typed back witty little quips in response to the things various people were saying. She laughed. Everyone stopped and stared at her. ‘You two are sharing secrets! That’s rude!’ The person mimed us huddled together, typing away wickedly. I didn’t want to make my typist feel awkward, so I just laughed it off. But what I wanted to say was, ‘How can you possibly accuse us of sharing secrets when you have spent ALL DAY laughing over jokes you wouldn’t share with me?!’

Faced with the pressure to attend family events, I tried bringing along a signing friend. Sure enough, I was later accused of being ‘anti-social’ when she was there, because we tended to sit together and chat with each other in Auslan, and didn’t mix with others much. They didn’t want me to bring her in future. It’s far less anti-social for me to sit there wondering what they are all talking and laughing about and whether they will take a pot-shot at me if I whip out my book or knitting.

If you are inviting a deaf person to a social event, stop and think about how they are going to access it. Perhaps you could book an interpreter (pay for it yourself – don’t ask the deaf person to – our interpreting bills are already high!) or invite some other deaf/signing people too. If there’s a movie involved, ensure it has subtitles. If there will be speeches, ask for a print out. Make sure the deaf person you invite knows the efforts you are going to to ensure their inclusion, so they know they don’t need to ask or try to figure it out themselves.

Inner-City Independence


This article was published in Grass Roots magazine…

Many people imagine you need acreage to be independent, but my ex-partner and I enjoyed 80% self-sufficiency on a small inner city block. At the time this article was published in Grass Roots magazine, we were marionette performers and had spent the previous four years touring with our show, The Grimstones. Our son, Jesse, was eight years old and we homeschooled him. It was a real challenge to manage our sustainable home life and eco farm with busy full-time jobs and a son to educate. But  when we’d neglected the sustainable lifestyle in the past, I’ve felt I’d lost my soul, spending too much time in sterile hotel rooms. Although I always took a craft project on tour to work on, it was when I got home that I could throw myself into the garden and all the new projects that I’d had time to dream up.


I never strove for complete ‘self-sufficiency’, but I aimed to produce food and products for as many of my family’s needs as possible, from materials as close to the source as possible. As well as producing from my block, I scavenged a lot from my neighbourhood.
The list of things we produced includes:

  • Cooking almost everything from scratch. We grew most of our fruit and vegies, and what we couldn’t grow, we bought locally from the farmer’s market. We bought meat from the market too, though soon I hope we won’t need to. I also scavenged from neglected local trees, and collected food for the animals from dumpsters. We bought salt and wheat grain in bulk, and were working our way through honey given to us by a friend. Raw dairy products came from a local farmer.
  • We tried not to buy too much other food, instead focusing on ways to feed ourselves well on these base ingredients. I made bread, pasta, pastry and lots of fermented foods. We bottled excess fruit (from our own and neighbouring trees, and from the farmer’s market) so we could still eat locally in winter, and we bottled all our tomatoes – often buying 100kg from a local farmer.
  • I had made my own soap, which has lasted us about five years. A project for one day was to work out how to make soap from ash lye and the fat we scraped off the top of our cooking stock. We bought in laundry detergent in bulk.
  • I was working towards a closed system of fertility for my garden. We composted all our waste, including humanure, and scavenged leaves and grass clippings from our local area to use for mulch and additional compost. I collected seaweed, dead animals and fish for fertility. My aim was to garden without buying in new products and ingredients, though I still needed to buy a few things.
  • We had a grid-connect solar electricity system that produced about two-thirds of our needs. Our solar heater used a tiny bit of electricity to produce lovely heat in winter. We had solar hot water, but used LPG to boost it and also for cooking. We had a greywater recycling system which we used when necessary. The 40,000lt rainwater tank provided for our house and garden, so we were completely self-sufficient in water most of the time – quite unusual in Melbourne.
  • We bought as little as possible, especially new items. We got most of our clothes and consumer goods from op shops, or made our own. From a ream of recycled office paper I made notebooks, and did art and craft with upcycled materials that we found or got from op shops. A lot of making happened as a result of trying not to buy: felted ugg boots, baskets and string from local plants, boxes made of papier-mâché, knitting from fleece I’d spun myself, making candles from wax I’d found in the hard rubbish and so on.



I’d always known I wanted to homeschool. The reasons we homeschooled were numerous:

  • The hierarchy and social structure of school is damaging to kids.
  • School tends to make kids less inquisitive and less keen to learn by stamping out the questions, the ‘whys’.
  • By home educating we could tailor the education to Jesse’s level for each activity, and find ways to engage him that were meaningful to him, so he was more likely to hold onto information.
  • We couldn’t have had the travelling performing lifestyle that we had if Jesse was in school.
  • Jesse learned so much through incidental life experiences, especially as we travelled, that his education was rich with doing rather than learning about doing.
  • Neither of us wanted to miss the fabulous Einstein moments as Jesse learned some new skill. It was wonderful to be there with him and share his journey.
  • We could choose Jesse’s curriculum. I believe that schools are gearing our kids for a life where oil is as abundant and cheap as it is now – and that Jesse would be better to learn skills that are more likely to be needed by the time he becomes an adult, when all experts agree we will no longer live in an economy fuelled by cheap oil.

We all loved it. We did have regular ups and downs, and changed what we were doing regularly to see what worked best for us. We’d noticed that Jesse was more satisfied and stimulated with a structured approach. We spent a few hours each morning homeschooling. Generally I tried to do two or three topics with him a day, and then handed him over to his other mother, who did another couple of topics. But if life was more interesting, or one topic ended up taking over for the day, we went with that. It was great to be able to be flexible. We gave Jesse a lot of input and he was pretty keen to do most of the topics we offered him, but, like any kid, at times he preferred to wander off and play Lego or read a book than do his homeschool work.

Asphyxia wove a basket cover for the chook food to keep wild birds out.

Asphyxia wove a basket cover for the chook food to keep wild birds out.

The sign says ‘Real Food’ and the gates keep the chooks out most of the time. Behind the lattice is a 40,000lt rainwater tank, Jesse’s favourite place to sit.

The sign says ‘Real Food’ and the gates keep the chooks out most of the time. Behind the lattice is a 40,000lt rainwater tank, Jesse’s favourite place to sit.


I built my own house on my block when I was 22. I’d just graduated from a computer science course and was being lured to work at the banks. I couldn’t think of anything more depressing. When I visited some handmade houses in NSW I was totally sold – I knew I wanted to spend my time building a my own home, making it an enormous artwork, rather than working nine to five under fluorescent lights on a computer to pay off a mortgage. I did work in computers for another year to save the money, but I didn’t mind that, knowing that the day I reached my savings goal, I would quit. And I did. My family was horrified that I threw away my job to do something I had no skills or experience in.

I paid for a contractor to dig and pour the concrete footings, and from there I did most of it myself. Friends came and helped me, and were as inexperienced as I was at building. I had no skills whatsoever – I had to work out how to hammer in a nail from a book. There was no-one who could take charge and say ‘This is how you do this’. My friend Andrew stayed with me for the first three weeks and helped me put up the timber frame – I learnt so much from him. After that it was just me showing my friends what to do. It took seven months until I moved in, but at that point it was really just a lock-up shell – there was no kitchen, no running water, nothing!

I hoped that through building I would become competent in many areas. And I did become a semi-decent bricklayer. But I’m still hopeless at carpentry – most of the woodwork came together as a fluke. I wired the house myself and learnt how electricity worked. But the plumbing wouldn’t remain leak-proof for me and in the end I had a professional come in to finish the job.



My house cost me $10,000 (about $25,000 today). Most of the materials were second hand. I assumed that this wouldn’t be my ultimate home for the rest of my life – I figured if I stayed more than three years, I’d be financially ahead, as that’s what I would have spent on rent. I was still here 15 years later and I hoped I would die here. I did wish I’d made the house a metre bigger in each direction, and a metre higher in the loft – but at the time I couldn’t afford that extravagance! As it was, the three of us squeezed into a tiny place that was 4m by 6m with a low sleeping loft overhead, a tiny room I added later which was just big enough for a double bed, and an outdoor bathroom. Our home had a beautiful soul. The whole place was filled with a sense of old-world romance. Everyone who visited felt it. There was nothing sterile; the lumpy whitewashed walls, the gothic arched stained-glass windows, the clawfoot bath in the loft right next to our beds: they were all enchanting and soothing. I like to be in beautiful spaces, and our home was one.



Although our block was only 450m2, because our house was small we had room for animals. We kept chooks for eggs and a recent experiment was raising our own broilers for meat. Worms provided castings and the worms themselves were also food for the chooks, as well as doing lovely digging in my garden. I was raising my first batch of silkworms and hoped to spin and use the silk, though I expected I’d only produce a small amount. Believe it or not, I was experimenting with breeding maggots as chook food. Yum! I also had bees for honey and wax.

City Bees

I wanted bees for years, but had trouble accessing information about how to keep them. The best way to learn is from an experienced beekeeper. I tried going to workshops, but since I’m deaf, I couldn’t lip-read the teacher through his bee-helmet. I tried bringing an interpreter, but she could no longer sign when she was suited up with thick gloves! Finally, a friend introduced me to Martin O’Callaghan. From him I bought a top-bar hive, complete with bees, and every time something needed doing, I rang him up and he came over to show me what to do. He was very visual at communicating with me, no lip-reading needed, and the one-on-one tuition worked perfectly. Usually I try to do things like this on the cheap – I would have liked to build my own hive, catch my own swarm etc. But what I was paying for was the private tuition, and for a deaf person like me, that’s the only way to go. I’d only had the bees for six months so was yet to harvest my first bucket of honey. I couldn’t wait!

Productive Bunny

I also kept an Angora rabbit for her fur, which I spun and knitted into clothes. The second-rate fur I felted and used as lining for shoes. I’d had her for about 18 months and her fur was amazing, seven times warmer than wool. The items I’ed made were exquisite, so soft, not a hint of itchiness. I wanted to understand if sustainable textiles were possible. And in small quantities, it seemed so. It seemed unbelievable we can make gorgeous garments from a rabbit that mostly ate weeds from my garden. I bought her a small amount of pellets, and planned to see if she could produce the same amount of fur just free-ranging in the garden. I learnt to spin from a lovely old lady at the Handspinners and Weavers Guild – I think she was a bit taken aback by my excitement and enthusiasm. I used a spindle rather than a spinning wheel; it was easy to take on tour, and I could spin a length of yarn while waiting to go onstage at the theatre – a good way to make use of ‘dead’ time.


I am competent with the sewing machine and sewed a lot of homewares for my family – bags, cushions, pouches, toilet cloths (to use in place of toilet paper), and much more. I tried not to buy fabrics – rather I collected good sheets from op shops. But I loved making artistic dolls, toys, wheatbags etc, and I got to a point where my really special fabric stash had completely dwindled, so eventually I lashed out and bought a handful of new fabrics. I used them very sparingly, as accents, to complement the second-hand fabrics.

I did make clothing – usually special items that I couldn’t get second hand. We found so many good clothes in the op shop that I tended to put my sewing energies into homewares, but I’d a few clothing projects on the go such as some down jackets for winter. I was very into art and made books and a lot of miniature dioramas in boxes – all from recycled materials.


Jesse’s garden includes the three sisters: corn, beans and zucchini.

Jesse’s garden includes the three sisters: corn, beans and zucchini.


My garden took a few years of learning, but for the most part we now had a constant flow of food without too many gluts. Every so often there’d be a failed crop, such as when the chooks got into the bed of seedlings I’d planted to eat in September – there was a gap that month and we bought from the local farmer’s market instead. I grew the food, and harvested several times a week. I picked anything that seemed ready, and as much of it as I thought the plant could cope with. I delivered it to Paula, who worked out how to process it all so it wasn’t wasted. She was amazing at getting through everything, especially when I give her a single stalk of asparagus, three pods of peas, and other items that don’t quite make a meal.


We also had a family culture of harvest feasts – sometimes it was a single item like the artichokes when they were ready. I made mayonnaise, then we sat down together and celebrated the exquisiteness of the artichokes. Other times the feast had several dishes. The main point was that they celebrated the deliciousness of home-grown foods.

Jesse really absorbed the celebratory atmosphere, and I think because of this he loved artichokes and spinach and many other vegies that traditionally kids don’t like. We had a delightful ritual at the time of taking a bowl of homemade ice-cream into the food forest, topping it up with berries, and then sitting down to eat in the midst of all the greenery. It felt so special and abundant.

We’d spent so many years touring with our show that I was looking forward to spending more time at home and I was thinking of projects like raising bunnies and pigs to eat, and learning to live without a fridge. I’d recently became a writer when I was commissioned to write a book series about my family of puppets, The Grimstones, published by Allen and Unwin.

Meet my new book, Future Girl 

My new book, Future Girl, is coming out in October. If you’d like a signed copy, pre-order now.

Future Girl is an own-voice coming-of-age novel set in near future Melbourne, that bursts with passion, resilience, optimism and joie-de-vivre. Presented as 16-year-old Piper’s stunning visual-art journal, the book is an instructional environmental call-to-arms, which explores my detailed experience of Deaf culture and what it feels like to be d/Deaf.

It’s taken me eight years to write and create artwork for this book, and with the final draft, my publisher said to me, ‘This is going to be your masterpiece.’ Aside from wanting to change her word to ‘mistresspiece’, I really hope she is right. You tell me.

Piper’s mum wants her to be ‘normal’, to pass as hearing and get a good job. But when peak oil hits and Melbourne lurches towards environmental catastrophe, Piper has more important things to worry about, such as how to get food. When she meets Marley, a CODA (child of Deaf adult), a door opens into a new world – where Deafness is something to celebrate rather than hide, and where resilience is created through growing your own food rather than it being delivered on a truck. As she dives into learning Auslan, sign language that is exquisitely beautiful and expressive, Piper finds herself falling hard for Marley. But Marley, who has grown up in the Deaf community yet is not Deaf, is struggling to find his place in the hearing world. How can they be together?

If you have shared my posts about Deafness, please share this one. I’ve learnt that there’s an overwhelming desire out there to understand Deafness and Auslan better. This book is your opportunity to dive in deep, and have a rollicking ride of art and urban food production at the same time. I will be so grateful if you can help me spread the word.

Pre-order here.


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 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.


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.


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.


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.


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.


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.




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.


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.


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.


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.




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 gender stereotypes are created

Do you ever wonder why our society is so obsessed with gender? What makes it SO important that most of us simply cannot relate to a person unless we know their gender? Are boys and girls innately different or is it society that shapes us? I have wondered this for a long time, and finally I found a book that offered real, evidence-based answers:

Here’s what I learnt from the book

We are obsessed with gender.

The first thing a baby is likely to hear when out of the womb is a pronouncement of his/her gender. Every day, for the first weeks and months of a child’s life, they hear their parents announce over and over which gender they are. We use gender to label, sort, segregate and even colour-code people. It becomes the most important category to which a child belongs. it is like saying to our children, “Your gender is really, really important. It determines what activities you’ll like and how you will behave. Please pay attention to how boys and girls behave and act and shape your preferences accordingly.”

We humans love to categorise things.

Creating stereotypes is an innate trait – it’s a way for us to quickly and easily understand our world, and we do this from a young age. The reason that so many stereotypes centre around gender is because that’s the focus our society gives it. If we give children a different focus, they will just as quickly create stereotypes around that.

A study on stereotypes.

Rebecca Bigler, a professor of developmental psychology at the University of Texas, shows that simply labelling a group leads children to develop stereotypes about that group. For example, students in a primary school class were each given a red or blue T-shirt and told to wear it every day for six weeks. The teachers treated these colour groups in the same ways they would treat gender. They said, “Good morning, blue kids, red kids!” “Let’s line up blue, red, blue, red.” Names were written on a blue or red bulletin board and students had a card of that colour on their desk. Students weren’t asked to compete with each other and the teachers showed no favouritism towards either group. They simply labelled the kids as being red or blue, over and over again.

In the next classroom, a ‘control’ group of children wore red and blue T-shirts but the teachers never mentioned the colour.

The result?

After only four weeks, children formed stereotypes about their colour-coded groups. They liked their own group better than the other group. Red-shirted children would say, ‘The blue kids are not as smart as the red kids.’ Just like with gender, they said that all blue kids act one way and no red kids act another way. They began to segregate themselves, playing with kids from their own colour group more than those with the other colour group, and were more willing to help kids in their own group.

The children in the control group didn’t form any stereotypes based on colour. If adults ignored the groups, even when there were very visible differences, children did too.

Simply by mentioning gender all the time, and sorting our world based on gender (think separate toilets for men and women, separate sporting events for men and women, separate clothing areas in department stores…) even if we never say anything stereotyped about a particular gender, our children will form the stereotypes for themselves.

We shape ourselves to fit our group.

Through similar classroom experiments, Bigler showed that children teach themselves to like and remember the activities favoured by their group, and tend to dislike and forget the details of activities favoured by the other group. This explains why boys may like remember every make and model of cars, while girls might like and remember details of how to use make up. Children quickly identify which group they belong to, and set about shaping their own knowledge preferences to fit.

We trick ourselves into believing our own stereotypes.

Children (and adults too) tend to forget exceptions to the stereotypes. For example, many children form the stereotype that women like cooking. Even when researchers show children a photo of a man standing in front of a stove, and tell the that this man likes to cook dinner for his family, if they ask the children about the man later, it doesn’t alter their stereotypes about cooking. Some children, when shown a picture of a female school principal would later remember her as the ‘lunch lady’ or ‘secretary’, while they’d remember the male cook at a hospital as being a doctor. We actually alter our memories to fit our stereotypes, rather than allowing our stereotypes to be altered by experience.

What can we do?

Because stereotypes are so hard to change, it’s good to get in at birth if possible. But we can all start to shift things now by ending the way we label and divide our world by gender. Instead of saying ‘fireman’ say ‘firefighter’. Instead of saying ‘See that man over there?’ say ‘See that person over there? The one with the blue shirt?’ Instead of saying ‘Good girl,’ say ‘Good kid’. Don’t invite ‘the girls’ over, invite your ‘friends’ instead. As shown in the  classroom with red and blue T-shirts, language is powerful. Small alterations can make a big difference.

Let’s get started today. Who wants to join me in going gender-neutral for one week? Watch your language and see if you can delete gender from it as much as possible.

If you’d like a print of this painting to remind you to stay on track with going gender-neutral, you can order one here.

Happy unChristmas cards

This is a card for those of us who don’t really do Christmas but don’t want to give a total slap in the face to those around us that do, by ignoring it entirely. If, like me, you’re an un-Christmaser, maybe you’d like a pack of these? They sold out quickly last year so grab them while they are available if they take your fancy.

Check my shop around Christmas.

Colourful quirky prints

If you’re looking for something sweet, quirky and colourful to brighten up a room, maybe one of my prints will fit the bill?

I’ve got prints about girls who want to be rabbits and birds, lots of lovely faces to bring life to your room, lots of birds, and plenty of prints about Deafness too.

Check them out here

if you have a blank spot on your wall that needs sparking up.