Tuesday, January 27, 2015

Public Stripping

I stood there, in my underwear.

They were pale blue, with small flowers on them. I remember it very clearly – mostly because there were four men in the room who I had never met before. They were looking at my body, and my mother wore a worried expression.

The tallest man touched me.

“You see, here and here,” he said.

His hands were warm. The other men were looking at my body, and none of them looked at my eyes.

“You can get dressed now, dear,” he finally said, and I scrambled to put on my clothes.

I was four.

I was not sure why that memory has always stayed with me, nor why it was a traumatic one. There was no suggestion of sexual impropriety – these men were doctors. Nobody ever acted inappropriately. It was not until the first time I looked at a medical image of a young girl with a disability that I blenched. A young girl in her underpants, facing the camera without a smile on her face. The image was posted online and I immediately recoiled. So did other women with a disability.

My disability is degenerative – I had limited intervention until later in life. But can you imagine the psychological trauma experienced by those now-adults who were routinely measured, prodded, photographed and inspected every month of their childhood?

In her scathing account about ‘public stripping’, Lisa Blumberg talks about this crude practice. Privacy in medical examinations may be the norm for ordinary persons, she says, but they’re not the norm for disabled people – and particularly not for disabled children. Doctors at hospital and clinics which specialise in paediatric conditions such as spina bifida, cerebral palsy, muscular dystrophy and brittle bone disease have traditionally displayed their patients in front of colleagues, residents, therapists and students. Public stripping is a degrading practice that has a lasting psychological impact on adults today.

Strap these to your feet, he said. They were sandbags, fashioned into clumsy calico bags that my mother could strap to my ballet shoes.

“They’ll strengthen your legs,” he said, and dutifully I went to my ballet classes – plie, plie, demi plie. Amongst all the other little girls in pink tulle, my feet weighed me down and I shuffled around the room. At the doctor’s, more public stripping, and a delighted inspection of my legs, hips and feet.

“I think she’s getting stronger,” he said at last, and my mother sent me back to ballet classes. Eventually, I refused to go.

“But you love ballet!” she exclaimed, and I did not have the words to tell her that ballet was now indelibly intertwined with doctors, pain and public stripping – with shame, embarrassment and a sure knowledge, instilled with a deft hand, that I was broken forever.

At a recent disability rights conference, Blumberg says, a 30 year old woman with spina bifida described her medical experiences in a voice shaking with pain and anger. All through childhood and adolescence, Anne told the group, the semi-annual orthopaedic examinations her doctors required her to have took place in a large hospital room, with 20 or more doctors, residents and physical therapists looking on. During the sessions, Anne was permitted only to wear underpants.

No one ever explained to Anne why she had to be examined in front of a group. No one ever considered whether she found it embarrassing or upsetting to be viewed nearly naked by so many people. No one ever acknowledged to her that she was being used as a teaching tool. No one ever told her or her parents that she had any choice in the matter.

What the medical profession does not understand, argues Blumberg, is that disabled people who seek medical advice are like anyone else seeking such advice. By and large, we want to be provided WITH a medical service, not to render one.

As an adult, I have an aversion to physicians. I can barely scrape up enough courage to attend for an annual medical examination – after a childhood filled with adult stripping and teenaged years filled with muscle biopsies and needle electromyograms, I am sufficiently traumatised to avoid any doctor, often to the exclusion of good general health. It is difficult for me to go into a doctor’s surgery without reimagining the worried look in my mother’s eyes or the doctor’s dispassionate tone. The smell of antiseptic or bleach makes my heart race still.

As disabled people, we are routinely discriminated against by the medical profession. We do not have access to regular medical facilities because of lack of accessible facilities or equipment – we are routinely denied basic treatment because we are ‘difficult’, not shaped or created in the same way that others are. We are killed at an alarming rate – we are ‘let go’ rather than resuscitated because of the opinion of the medical profession about our quality of life, in the name of mercy killing. The phrases ‘she’s not suffering any more’ or ‘he’s free now’, are sentiments regularly stated at the funerals of disabled people. We’re killed even before we’re born, in the womb, a staggering 90% of foetuses diagnosed with Down syndrome terminated on the basis of their difference. We are sterilised without our consent and have routine medical procedures carried out without our informed consent.

‘All the ladies in the group home go and get the shot every month,’ a woman living in a group home told my friend. Depo-Provera suppresses menstruation in many women, despite carrying side effects. Few of the women in the group home are sexually active, but menstruation is a messy business. None of the women were given any information about the side effects or about using other forms of contraception. It goes on every day, this casual breach of our rights in medical settings.

There’s a prevailing myth that people with disability should be ‘dealt with’ by the medical profession, and that leads to the belief that ‘doctor knows best’. People with disability certainly need access to good medical care. But why should that be at the expense of our dignity, our privacy and most of all, our basic human rights?

The next time I take my clothes off in front of a group of men, I expect them to throw money at me. As a middle aged disabled woman who isn’t prone to frequenting strip clubs, I don’t expect that to happen often.
You can read Lisa Blumberg’s account about ‘Public Stripping’ here.

Tuesday, January 20, 2015

I call myself an Australian

My parents arrived in this country on a boat, and yet I call myself an Australian.

As a disabled woman, I am in a minority group, yet I call myself an Australian.

But according to racist pages promoting a new rally - the 'Reclaim Australia Rally' - 'patriotic Australians' need to stand together and stop the minorities from changing our country. They're marching in April to tell the rest of Australia that they don't want halal certification, burqas and the teaching of Islam in government schools. In short, they don't want Muslims in our country, and they don't want our country to change to suit them.

3,306 likes in Perth, and another 500 or so in Bunbury. One in almost every state. It saddens me, because this is the message to anyone who is different - 'we will not tolerate diversity'.

My parents arrived on the 'right kind of boat'. They were ten pound Poms, and my father was skilled and the right shade of white. He was Dutch, and his peers were self described 'wogs' and 'dings' - people from Italy or Greece or Malta, paid to come to this country under the Skilled Migrant program. Nowadays, being of Italian or Greek descent is unremarkable - but all the kids with salami sandwiches, back in the day, were teased relentlessly. I'm a first generation migrant, but nobody ever told me to go away because my very British mother bought Polo mints and held tea parties. No Aboriginal person ever told me that I should leave their country because I was white. Nobody ever told me what I ate or wore or did was wrong, or bad.

We will not tolerate diversity.

'We don't want to change the country to accommodate their needs', they say, and I feel uneasy. Because there is no reason that 'they' need halal - but there is also no reason that 'they' need steps, no reason they need to adjust their teaching in schools to accommodate differences. There is no reason 'they' should make things accessible and available to others, because we are a minority. Yet we disabled people lobby for change - change for a minority group. We will only ever be 20 percent of the population. Why should 'they' tolerate us and not them? Why should 'they' change? Why should 'they' tolerate difference, let alone embrace and welcome it?

'They' - the intolerant - are not just the rednecks from down the street. Facebook has a neat way of throwing up an algorithm that allows you to see the comments from your friends first. From the 'Reclaim Australia - Perth' page, a comment by one of our former Scout parents, a staunch Christian woman -

'Putting one or two or fifty in prison doesn't prevent their being replaced. They have to be removed from the country, every Islamic man, woman and child. As long as one Muslim remains there will be someone with intent on seeking the Islamic state agenda.'


And these views, from others -

'Islam is islam, the quran is the quran. No such thing as moderate Muslim.'
'That is true, and only because the tenets of islam teach them to do these very things! The fact that the majority of muslims choose not to openly engage in jihad against non-believers, simply means they are not good muslims. Those who do engage in jihad are the ones who follow the qur'an and hadiths very closely.'

And I think about my yesterday afternoon, which was spent with my friend and her mother. She always feeds me too much and I regard her as my own mother. We talked about each having six children (she with four girls, me with four boys) and breastfeeding and how wonderfully hot the weather was. I told her that I couldn't wear a hijab and long sleeves, I would roast, and she unbuttoned her dress to show me the light cotton wear underneath. I would still roast, I told her, and she smiled. Family talk, more offers of baklava, and I went home, and slept, and woke to these posts.

I spent my yesterday morning talking to people, including an Aboriginal artist who chatted easily with me about country, and his mob and mine, and painting styles and cultural traditions in Aboriginal art. I'm as white as the driven snow, but I'm still accepted as Australian by our Aboriginal brothers and sisters, the original owners of this land. We invaded this country, and brought our culture with us - my culture included, there is a fish and chip shop on every corner, teapots in every store. I went to my friend's house, then home to sleep, and woke to these posts.

I am almost in tears.

They horrify me, those posts, the idea of a rally against difference. This is not the Australia I was born into. This is not the Australia I signed up for. I believe in an Australia where you can embrace diversity and still be a patriot. An Australia where it does not matter what other people wear and what they eat.

A few months ago, there was a campaign to boycott Vegemite on the premise that it has halal certification. I forwarded the comments to Vegemite, including the accusations that they were 'funding terrorism'. They emailed me back. So the last word on this, for me, goes to Vegemite, who state that they are against racism and bigotry and disrespect. For me, THAT is Australian.

Vegemite's response re halal certification, 2014:

The AFIC symbol has been present on some of our products, including Vegemite, for some time now and we are proud to make products that can be enjoyed by people of different backgrounds, beliefs and ethnicity. We are also proud of locally manufacturing our products, many of which are exported to markets throughout South East Asia. Our export sales are an essential part of business, and crucial to preserving investment and employment at our manufacturing sites in Australia.

One of the main reasons for the AFIC Halal symbol on our packaging is to assist people of Muslim faith, both here in Australia and across our export markets, to identify our products as including ingredients that meet their consumption requirements.
Further, we wish to advise the Vegemite formulation has not altered nor does the product contain any ingredients from animals. Halal certification warrants that, in accordance with Islamic law, the yeast has been processed to ensure the product is alcohol free.

The inclusion of the AFIC Halal symbol is not intended to offend any member of the public of any cultural or religious belief. We do not believe that it promotes one religion over another rather it simply provides people of Muslim faith with information about the food choices they make. Following other consumer inquiries, we have written formally to the AFIC in order to seek clarification on its business activities. In response, the AFIC provided us with verbal and written assurances that it is not engaged in unlawful activities. As such, we have confidence in AFIC as a reputable organisation. We pay a blanket administration fee that covers the certification of a number of our products. This cost is not a tax and is not attributed to a particular product or brand, therefore consumers don’t pay more for a Halal certified product versus a non-certified product.

As a business, we are founded upon values of integrity and respect and take a strong stance against any individual or campaign promoting racism, bigotry and disrespect.

We hope this addresses your questions and any concerns you might have. We produce products that bring joy and pleasure to millions of people across the world every day, and we look forward to continuing this tradition.

Image description - a map of Australia has a series of primary coloured pins placed upon it to symbolise diversity.

Thursday, January 15, 2015

A Different Kind of Attitude

Like other disabled people in Australia, I’ve been watching the new Attitude series on the ABC.

I don’t know what I’d expected. The first two episodes made me think a little, but not a lot. I considered them well made, but not terribly different from Four Corners. Stories about disabled people and their lives, which we tell every day.

But then I watched THAT episode, and it changed everything.

THAT episode is one that I would probably have not watched unless I’d been told to. It was about sport - I’m not the sporty type. It was about the Solomons, a country I’d never been to. And worst of all, it was narrated by a Paralympian – a good looking jock who’d rediscovered himself as a ‘motivational speaker’ – aren’t they all? I rolled my eyes and prepared myself for 'Kurt Fearnley meets The Third World', and watched with a sense of trepidation.

I couldn’t stop watching.

According to the blurb, Paralympian Curtis Palmer ‘has just one week to train Solomon Islanders with disabilities on how to become coaches and empower lives through sport.’ I’d prepared myself for a dose of inspiration porn, but this was neither pit nor pedestal. This was something different.

Palmer narrates this episode and his insights are startlingly honest. I imagine that he wasn’t in the least prepared for the physical impact of living in a tin shack, with no running water, let alone airconditioning. Drenched in sweat, he speaks frankly about having temperature regulation issues and the importance of a role model keeping a grin on their face – and the importance becomes apparent as the story moves on.

The sports clinic is filled with Solomon Islanders with disabilities – the twisted, the paralysed, the palsied and the limbless - but revolves around one man, David, a bilateral amputee. David has rarely left his home since having his legs removed. The show catalogues the inaccessible terrain, the harsh conditions, the 1930’s prostheses and the old medical model wheelchairs. A pivotal moment involves Palmer being carried by a group of people up a rocky incline, and realising that David never leaves his house because he simply cannot – it is built on a hill, between a river and a mountainous backdrop. His house is a simple structure, made of wood, and one of the most revealing moments comes when Palmer asks David how David thinks Palmer lives.

‘I think your life is easy…you probably have a big kitchen.’ Palmer concedes that he does.

‘And water in your house?’ Palmer’s face reveals a complicated progression of overwhelming emotions – in a first world country, a quadriplegic is often considered disadvantaged. Here, he is envied and considered amongst the most privileged of men, for basic amenities we take for granted.

All of that, remarkable. But the most important part of the story was this. It was a story about a country so far removed from our own that they could be in a different world. And yet, it could be the same place.

I noticed that David had built a rudimentary Freewheel, much like the commercial one I’d bought for my own wheelchair. I’ve been discussing Freewheels with some folk in remote Aboriginal communities of Australia; red dirt is not kind to wheelchairs. The Freewheel helps lift your castors off the ground in rugged terrain – whilst Palmer struggled with his expensive lightweight wheelchair, David’s old wheelchair travelled across the bumps and rocks with ease. Innovation is universal.

I watched David’s terror mounting on his first trip to town since becoming disabled, and recognised his fears. I look down, he said, when I go out. I am ashamed, because they stare. One man pulls out his camera to take a photograph of his legs and Palmer teaches him to ignore the stares, to develop self-confidence, to learn wheelchair skills, to know how to ask for assistance. Palmer notes David’s terror and connects it to his isolation – David is segregated, trapped inside an inaccessible house and within an inhospitable environment. He has never learned independence, and the thought of leaving the house without help, let alone trying wheelchair sports, is terrifying. And I think about the many men and women trapped in institutions around Australia, safely cocooned, both in care and dependence and fear. Segregation and isolation is universal.

And the most powerful moment comes when David learns to coach. His quiet voice grows in timbre and confidence – his eyes stop reflecting fear and start reflecting hope. When he runs his first wheelchair basketball game for able bodied students, he speaks with quiet authority, a far cry from the frightened man at the beginning of the show. Back in the village, he teaches the children to bounce a ball. He trades phone numbers with people who have been part of the Sport for Change program. In one short week, sporting became the universal language that binds that community, tying it together with peer support, respect and a mutual passion.

I can’t help wonder what the Attitude series will look like if it comes to Australia. The difference, for me, was watching the story of disabled people through the lens of other disabled people. That is what makes it unique.

I've changed my mind about wheelchair sports forever.

It’s a big ask, finding $50,000 to tell the stories of people with disability in Australia to the rest of the country, the rest of the world. But I watched this episode and thought that this kind of show might just bring the type of change that Australia desperately needs right now. We can stop living as third world citizens in first world environments. We can stop being invisible. We can start Australians thinking with a whole different kind of attitude.

I want that to happen. Today, I have donated $100 to the Attitude Foundation to bring the producers to our country. If you’re moved to do the same, please hit this link.

You can watch the Sport for Change (and the rest of the Attitude Live episodes) here.

The next Attitude episode screens on Saturday 17 Jan at 6:30pm.

Image description: Curtis Palmer shakes hands with David, a Solomon Islander. Both men are using wheelchairs. A man and two children look on. The ground is unsealed and made of earth and there is an almost vertical flight of stairs behind them.

Friday, January 9, 2015

I sat down too long one day - and then something happened.

I sat down too long one day, and something happened.

Your eyes stopped connecting with mine, but I expected that. After all, I was no longer on your level. Instead of being an Amazonian five foot ten inches, I was shorter – barely half your height, on wheels and a titanium frame. I expected that.

What I did not expect was for everything else to change.

I was no longer on your physical level, but neither was I on your level as a person. Why else would you think it was okay to treat me so differently?

I finished my Christmas shopping, and my son watched me unpack my wheelchair into the car. You came up to me and wished me a Merry Christmas. I smiled and thanked you, and then you said, ‘I’m always nice to people in wheelchairs. It is because I feel sorry for you.’

Why do you feel sorry for me?

I was buying asparagus, and a delightful small child came and asked me what ‘fruit’ that was. I told him it was asparagus, and we had an endearing conversation about the origins of ‘sparrow-grass’. He was on my level, your son – and so I was confused when you came over and tried to pull him away. I tried to reassure you that he was just making conversation, but you weren’t worried that he was annoying ME. ‘No,’ you said fiercely, pulling his arm, ‘I do not let him talk to people in wheelchairs in case he catches a disease.’

Why do you think I’m contagious?

I was shopping, and you offered to unpack my scant ten items onto the conveyor belt. I refused, with a smile, but you insisted. ‘I always help people in wheelchairs,’ you said. Then, your unwanted help given, you asked why I used a wheelchair. And if I was paralysed. And a lot of other questions, sympathetically, not noticing that my monosyllabic answers were delivered between gritted teeth. My favourite question was in response to the news that I have six children. ‘Are they all yours?’ you asked, confusingly. And at the end of our conversation, you told me that you worked at the shop across the road and if I ever needed anything (a back rub? A personal loan?) I was welcome to come and see you.

Why must I be your good deed for the day?

I see it in your eyes every day, despite the fact that I know that most of you sit down, too. In office chairs with wheels, on sofas and in train carriages. Interestingly, if my leg was bandaged, you would not treat me as ‘other’. You would laugh and ask me ‘what I had done’ to myself. You’d never ask me about my sex life, or my life expectancy, or the intensely private parts of myself that you now feel entitled to ask about. My sitting-down-ness did not give you permission to answer your questions, nor to accept rudeness or charity or pity – my sitting-down-ness did not give you permission to treat me as though I am no longer on your level, as though I am lesser.

I sat down, and it was though I had sunk into a pit, or had been elevated to a pedestal. Neither true, neither real. I ceased to be a mother, a carer, an advocate who could advocate outside of my own lived experience - I ceased to be a shopper, or a driver, or an employee, or a member of the community. I became invisible - just because I sat down.

I sat down, and something changed forever.

Friday, January 2, 2015

The Secret Lives of Us

The lives of people with disability are full of secrets.

Not secrets-on-purpose, but accidental secrets. Only a female wheelchair user knows the importance of a well-fitting bra so that your straps don’t fall down when travelling – only a sheltered workshop employee knows what it is like to sweat over some menial task and be paid three dollars an hour for a long day’s work. There are secrets associated with bodily functions, rarely talked about, to preserve whatever dignity remains to you – secrets associated with discrimination and shame and humiliation, inflicted upon you over and over. All of these secrets make up a rich tapestry of experience that is rarely observed by the rest of the community. Those secrets, sometimes divulged through the telling of stories, are the secrets that can lead to the changes that we desperately need to be included in daily Australian life.

I’ve just watched an RSA Animate video – you can watch it here http://www.upworthy.com/the-biggest-problems-of-our-times-all-come-down-to-this-word-that-starts-with-e?c=upw1 – which talks about the need for ‘outrospection’, rather than introspection. The author of the video, Roman Krznaric, says that in the twentieth century, we said that the best way to discover who we are was to look inside of ourselves. He believes that is something that needs to change in the twenty first century. I agree. For years, shows like Dr Phil and Oprah have told us to indulge in navel gazing in order to improve our lives. Has it worked? I don’t think so. Krznaric says that in order to discover who you are and what you need to do with your life, you need to step outside of yourself, be ‘outrospective’ and expand your empathic potential.

Empathy is a funny word, and frequently misunderstood in a disability context. It is often confused with sympathy, or pity. That’s not what people with disability want – who wants to be someone’s good deed for the day? There are two types of empathy – effective empathy, a shared emotional response, mirroring someone’s emotions. That’s the way that you feel when you see someone struggling with something or suffering terribly – you feel bad for them. But the other type of empathy is cognitive empathy. That’s the type of empathy we need. It’s dangerous empathy, the kind that leads to the understanding of another person’s world view, understanding the experiences that shape how they look at the world, creating lasting social change. Dangerous empathy, because it can create revolution.

How do we create this dangerous empathy? Why, by sharing the Secret Lives of Us.

I loved this idea. An empathy museum, not a dusty space full of Victorian relics, but an experiential and conversational public space. Imagine a human library where you could borrow a person with a disability who had lived in an institution - to sit and have a half hour conversation. Or a line of sewing machines and former sheltered workshop factory workers, where you could learn to do something really menial for an hour, and be paid two dollars fifty at the end of it. A café, where you would be served the same fare and have the same choices that a person living in a boarding house is allowed, and be able to sit and watch a video where you discover what twentieth century Australian life means for a bunch of people with disability. A place where you could make a connection by stepping outside of yourself and discovering the secret lives of people with disability.

By sharing the secret lives of us, we can tap into the evolutionary basis of human cooperation and create connections that were not there before. It’s a whole new challenge, exploring our capacity for empathy, especially under a conservative government who places more emphasis on the economy than on people. As people with disability and members of a community who care about fairness, we need to forget charity and altruism and put emphasis on the ‘other e-word’.