Grace Tame: 'To my fellow survivors – it is our time', National Press Club - 2021

3 March 2020, National Press Club, Canberra, Australia

In April of 2010, I was battling severe anorexia. Truth be told, I still am.

This illness had nearly taken my life the year prior, and seen me hospitalised twice. Bone thin and downed in fine down hairs from malnourishment, I was picked on for the way I looked. My mum was eight months pregnant at 45. I was a 15-year-old student at a private girls’ school in Hobart.

I arrived later to discover the rest of my Year 10 classmates were attending a driving lesson off campus I had completely forgotten about. Lapses like this weren’t uncommon – I was barely there. One of the senior teachers saw me walking around aimlessly in the courtyard. He was very well respected, the head of maths and science at the school for nearly 20 years. He taught me in Year 9. I thought he was funny. He told me he had a free period and asked me to chat with him in his office. He asked me about my illness, I talked, he listened. He promised to help me, to guide me in my recovery.

As a teenager with no frame of reference, and thinking nothing odd of this, I told my mother about the conversation. My parents had a meeting with the school principal, requesting the teacher stay away from me. In (a) meeting I then had, I think to apologise to him for putting him in this position in front of the principal. I was told I had done something wrong.

Thus, the first seeds of terror, confusion, and self-doubt were sewn in my mind. Indeed, it didn’t make sense. In secret, he was adamant I still come to see him. To talk. My parents were against me, he insisted. I was not to tell them because they wouldn’t understand. Pregnant women, he said, were full of hormones. That must be why my mother and I were arguing.

He gave me a key in his office, where it was always music playing, and the same music always, Simon and Garfunkel. Over a period of months he made me feel safe. I was sexually abused as a six-year-old by an older child who told me to undress in a closet before molesting me. He told me he would never hurt me. Until he did. By way of a masterful re-enactment I didn’t see coming. With a closet. And an instruction to undress.

Most of you know the story from there. That is, how I lost my virginity to a 58-year-old paedophile and spent the next six months being raped by him at school nearly every day on the floor of his office. When I reported him to police, he found 28 multimedia files of child pornography on his computer. As per the lasting impact of and manipulative grooming and a four months after the abuse, I effectively defended him in my statement. I was terrified he would find out I betrayed him and he would kill me. He was two years in jail for maintaining a sexual relationship with a person under the age of 17.

Repairing myself in the aftermath of all this was not a simple, linear undertaking. For every step forward, there were steps back and to the side, and some almost off the edge. I saw counsellor after counsellor. But I also abused drugs, drank, moved overseas, cut myself, threw myself into study, dyed my hair, made amazing friendships, got ugly tattoos, worked for my childhood hero, found myself in violent relationships, practised yoga, even became a yoga teacher.

I starved, I binged, and I starved again. One of the toughest challenges on my road to recovery was trying to speak about something we were taught is unspeakable. I felt completely disconnected from myself and everyone around me. Many people didn’t know how to respond. That said, the ones who listened, the ones who were eager to understand, even when they couldn’t, made all the difference.

Still, the doubt lingered. How could I have been so stupid, as to not see what this man was doing from the outset? Was it my fault? Should I have known it was a lie when he said he learned more from me than any of his other students? Maybe I should have been more alarmed when he asked me if I knew where my clitoris was. It was when the perpetrator was released after serving 19 months for abusing me, correction, maintaining a sexual relationship with me as a 15-year-old, and then spoke freely to the media about how awesome it was, I realised we had this all around the wrong way.

Add the fact this man was awarded a federally funded PhD scholarship to the only university in my state. My mother was studying there. She soon dropped out because of his presence. In fact, he was put in student accommodation. Despite multiple reports to police by fellow students of his predatory behaviour, and once again convicted and jailed for his vulgar public comments during his PhD tenure, he was eventually awarded a doctorate.

After all this, it became quite obvious to me why child sex abuse remains ubiquitous in our society, while predators retain the power to get what they want, to objectify their targets through free speech, the innocent, survivors and bystanders alike, are burdened by a shame-induced silence.

I connected with groundbreaking fellow survivor and journalist, Nina Funnell. I needed to raise awareness and educate others about sexual abuse and the prolonged psychological manipulation that belies it. After months of recounting, retraumatising details, tearfully transposed by Nina, we discovered we were barred by section 194k of Tasmania’s evidence act, that made it illegal for survivors of child sexual abuse to be identified by the media, even after turning 18, even with their consent. Nina created the Let Her Speak campaign to reform this law. We were then joined by 16 other brave survivors who lent their stories to the cause. The law was officially changed in April last year, almost 10 years to the day from the beginning of my story.

It is so important for our nation, the whole world, in fact, to listen to survivors’ stories. “Whilst they’re disturbing to hear, the reality of what goes on behind closed doors is more so. And the more details we omit for fear of disturbance, the more we soften these crimes. The more we shield perpetrators from the shame that is resultedly misdirected to their targets. “When we share, we heal, reconnect, and grow. Both as individuals and as a united strengthened collective. History, lived experience, the whole truth, unsanitised, and unedited, is our greatest learning resource. It is what informs social and structural change. The upshot of allowing predators a voice but not survivors encourages the criminal behaviour.

Through working with Nina, finally winning the right to speak, and talking with fellow campaign survivors and countless other women and men who have since come forward, it has become clear that there is the potential to do so much more to support survivors of child sexual abuse to thrive in life, beyond their trauma. And more so, to end child sexual abuse. It is my mission to do so. And it begins right now. As a fortunate nation, we have a particular obligation to protect our most vulnerable. Our innocent children, and especially those further disadvantaged through circumstance, being part of a minority group, or geographical location. And there are three key areas that we can focus on to achieve this.

Number one, how we invite, listen, and accept the conversation, and lived experience of child sexual abuse survivors. You have heard me say it before, it all starts with conversation. Number two, what we do to expand our understanding of this heinous crime, in particular, the grooming process, through both formal and informal education. Number three, how we provide a consistent national framework that supports survivors and their loved ones, not just in their recovery, but also to disempower and deter predators from action.

So, what is it that we must do? First and foremost, let’s keep talking about it. It’s that simple. Let’s start by opening up. It is up to us as a community, as a country, to create a space, a national movement where survivors feel supported and free to share their truths. Let’s drive a paradigm shift of shame away from those who have been abused and onto abusive behaviour. Let’s share the platform to remind all survivors that their individual voice matters amongst the collective. Every story is imbued with unique catalytic educative potential that can only be told by the subject. Let us genuinely listen, actively, without judgment, and without advice to demonstrate empathy and reinsure it never was our fault. Further to this point, while I must express my unflinching gratitude for this new-found platform, I would like to take this particular opportunity to directly address the media with a constructive reminder – the need for which has become starkly apparent to me this past month.

Hosts, reporters, journalists, I say to you – listening to survivors is one thing – repeatedly expecting people to relive their trauma on your terms, without our consent, without prior warning, is another. It’s sensation. It’s commodification of our pain. It’s exploitation. It’s the same abuse. Of all the many forms of trauma, rape has the highest rate of PTSD. Healing from trauma does not mean it’s forgotten, nor the symptoms never felt again. Trauma lives on in ourselves. Our unconscious bodies are steps ahead of our conscious minds. When we’re triggered, we’re at the mercy of our emotional brain. In this state, it’s impossible to discern between past and present. Such is retraumatisation.

I cried more than once while writing this. Just because I’m been recognised for my story doesn’t mean it’s fair game anywhere, any time. It doesn’t get any easier to tell. I may be strong, but I’m human, just like everyone else. By definition, truths cannot be forced. So grant us the respect and patience to share them on our own terms, rather than barking instructions that take us back to your darkest moment, and ‘tell us about being raped’. The cycle of abuse cannot be broken simply by replaying case histories, we cannot afford to back track. Else, we’ll go around in circles, trapped in a painful narrative, and we’ll all get tired, both as speakers and listeners. We’ll want to switch off and give up. And retreat once more into silence.

On average, it takes 23.9 years for survivors of child sexual abuse to be able to speak about their experiences. Such is the success of predators at instilling fear and self-doubt in the minds of their targets. More so than they are masters of destroying our trust in others, perpetrators are masters of destroying our trust in our own judgment. In ourselves. Such is the power of shame. A power, though, that is no match for love. When I disclosed my abuse to another of my teachers, Dr William Simon, his absolute belief in me was the only assurance I needed to tell the police. It helped me recover a little of my lost faith in humanity. There certainly isn’t a single rigid solution. Solutions will naturally come in due course by allowing and enabling voices to be heard.

Certainly, talking about child sexual abuse won’t eradicate it, but we can’t fix a problem we don’t discuss, so it begins with conversation. Which brings me to my second point: from there, we need to expand the conversation to create more awareness and education. Particularly around the process of grooming.

Grooming – it’s a concept that makes us wince and shudder and as such, we rarely hear about it. To the benefit of perpetrators. While it haunts us, and we avoid properly breaking it down, the complexity and secrecy of this criminal behaviour is what predators thrive on. In turn, we enable them to charm and manipulate not just their targets, but all of us at once, family, friends, colleagues and community members, and this must stop. Our discomfort, our fear, and resulting ignorance needs to stop giving perpetrators the power and confidence that allows them to operate.

As a start, we should all be aware of what has been identified as the six phases of grooming, that certainly ring true in my experience. Number one, targeting. That is, identifying a vulnerable individual. In my case, I was an innocent child, but I was anorexic, with significant change happening at home. Number two, gaining trust. That is, establishing a friendship and falsely lulling the target into a sense of security, by empathising and assuring safety. For me, that is what I thought was listening to my challenges. Empathising with my situation, and providing me a safe space to retreat to when I needed it. Number three, filling a need. That is, playing the person that fills the gap in a target’s mental and emotional support. In my case, although I was surrounded by an incredibly attentive family and team of medical professionals, most of their support came in the form of tough love. The teacher thus assumed the role of sympathiser, telling me what I wanted to hear. Number four, isolating, driving wedges between the target and their genuine supporters. This involves pushing certain people away, but exploiting others. I remember studying the film Iron Jawed Angels in history. The main character is force fed, much like I had been. Aware of my distress upon seeing this, my history teacher quietly led me out of the classroom. I said nothing. But she took me straight to his office. Where she left me with him. Panicked, in tears. It wasn’t until many years later I questioned why she and other staff would take me to him when I was upset. Staff he privately mocked and referred to as ‘the menopausal virgins club’. He must have told them. Number five, sexualising. That is, gradually introducing sexual content as to normalise it. In my case, in conjunction with subtly explicit conversation, I was carefully exposed to material that glorified relationships between characters with significant age differences. There was one film in particular he made me watch, called The Prime of Miss Jean Brodie, the last line of which, ‘Give me a girl at an impressible age, and she is mine for life’.

And remember how I said Simon and Garfunkel was always playing? Their music was the soundtrack to The Graduate. He made me watch that too. It was, both literally and figuratively, The Sound of Silence. You know the lyrics. The vision that was planted in my brain, still remains, within The Sound of Silence. Number six, maintaining control. That is, striking a perfect balance between causing pain and providing relief from that pain. To condition the target to feel guilt at the thought of exposing a person that also appears to care for them. Abusers scare you into silent submission. At over six foot, he towered above me. He once told me a story about a friend of his who sought revenge on a woman by digging her eyes out with a spoon. He told me he killed people as a soldier. He’d also sit outside on my street at night in his car, to watch me undress through the window. I was already embarrassed by my shape as a young teenager in eating disorder recovery. I remember standing naked behind his desk after he had just raped me, and asking him if he thought I was fat. He looked me up and down and said, ‘You could do with some more exercise’. Like I was a dog. But he also told me I was beautiful. See, how it is all stiflingly, painfully complex?

But as we talk more about child sexual abuse, our lived experiences and what we know, our understanding of this premeditated evil will continue to develop. We need to warn our children, age appropriately, of the signs and characteristic behaviours, while educating how to report it, should it happen to them, or to those around them. This is a serious enough topic, unfortunately too common in occurrence for us to hope that kids know this. So I challenge our education system to look for ways to more formally educate our children. Because we know that education is our primary means of prevention.

And finally, to my third point, we need structural change. A national system that supports and protects survivors and deals with crimes in proportion to their severity. Let’s start by considering the implications of linguistics related to offences. Through Let Her Speak campaign efforts, we saw the wording of my abuser’s charge officially changed from maintaining a sexual relationship to a person under 17, to the persistent sexual abuse of a child. Think about the difference in the crime according to the language of both of these. Think about the message it sends to the community. Think about the message it sends survivors. Where empathy is placed, where blame is placed, and how punishment is then given. We need to protect our children not just from the physical, mental, and emotional pain of these hideous crimes, but from the long lasting sometimes lifelong trauma that accompanies it. Whilst national structural change is no small feat, nor is educating our children on the dangers and the complexities of grooming, it is work that needs to be done and we need to start somewhere.

Let’s start by reviewing our linguistics and agreeing between ourselves. We have eight different state and territory jurisdictions and eight different definitions of consent. We need to agree on something as absolute as what consent is. We need a uniform, state and federal, national standard definition of consent. Only then can we effectively teach this fundamentally important principle consistently around Australia.

Since I was announced as Australian of the Year just over a month ago, hundreds of fellow child sexual abuse survivors have reached out to me to tell their stories. To cry with me. Stories they thought they would take with them to the grave, out of shame for being subjected to something that was not their fault. Stories of a kind of suffering they had previously never been able to explain. Stories of grooming. I am one of the luckiest ones. Who survived, who was believed, who was surrounded by love.

And what this shows me is that despite this problem still existing, and despite a personal history of trauma that is still ongoing, it is possible to heal, to thrive, and live a wonderful life. It is my mission and my duty as a survivor and as a survivor with a voice to continue working towards eradicating child sexual abuse. I won’t stop until it does.

And so, I leave you with these three messages – number one, to our government – our decision-makers, and our policymakers – we need reform on a national scale. Both in policy and education. To address these heinous crimes so they are no longer enabled to be perpetrated. Number two, to my nation, the wonderful people of Australia – we need to be open, to embrace the conversation, new information, and take guidance from our experiences so we can inform change. So we can heal and prevent this happening to future generations.

Number three, and finally, to my fellow survivors – it is our time. We need to take this opportunity. We need to be bold and courageous. Recognise that we have a platform on which I stand with you in solidarity and support. Share your truth. It is your power. One voice, your voice, and our collective voices can make a difference. We are on the precipice of a revolution whose call to action needs to be heard loud and clear. That’s right. You got it. Let’s keep making noise, Australia.”

Alfonso Calderon: 'We will not be discouraged. We will not falter. We will not stop this movement', Testimony to Florida lawmakers about gun reform - 2018

21 February 2018, Tallahassee, Florida, USA

First and foremost, I''d just like to thank everybody for giving us this platform. And Senator Rayder, from Parkland, who came here.

If there's one thing I want everyone to remember here today about this, is we're just kids! I know myself, I'm only sixteen, I'm a junior in high school. Most of my worries are, what show am I going to watch at 6pm, when do I do my homework, how do I fit in rehearsals for theatre.

I know for my other colleagues it's sports, or maybe film

But everybody needs to remember, we are just children.

A lot of people think that that disqualifies us from even having an opinion on this sort of matter. As if because we've been through a traumatic experience, that we don't know what we're talking about that we're speaking irrationally.

And I want everyone to remember, that is not the case. We, more than anybody else, understand the violence that comes through certain guns. We more than anybody else understand what it feels like to lose somebody. We more than anybody else understand what if's like to have a beautiful community like Parkland, and have it taken away from us by the media, and by everybody else, and by Nikolas Cruz, who just ruined its image.

Parkland is a beautiful, safe town. And it's now ruined.

I know personally, I'm going to live there for a pretty long time, and it's not going to be the same. It's always going to be, 'oh, I'm so sorry to hear that you're from Parkland'.

I want everybody to remember, we are just kids. I'm sorry, it's difficult to talk about this sort of thing, because not even more than a week ago, I was worried about a math test, I was worries about having a school show for he children in the elementary school, just a road down.

The way people today have greeted us, or not greeted us, is acknowledged by Ryan.

We aren't being taken seriously enough. Now I personally don't know the steps that we're going to havewe're going to take, but once we figure that out, we're going to take them, and you better believe, we're gong to take them as soon as possible.

Because, although we are just kids, we understand.

We know. We are old enough to understand financial responsibilities. We’re old enough to understand why a senator cares about reelection or not. We are old enough to understand why someone might want to discredit us for their own political purposes, but we will not be silenced.

It has gone on long enough that we… Just because we are kids, we are not allowed to understand.

But trust me, I understand.

I was in a closet, locked, for four hours with people who I would consider almost family, crying and weeping on me, begging for their lives. I understand what it’s like to text my parents, “Good-bye. I might never, ever get to see you again. I love you.” I understand what it’s like to fear for your life, and I don’t think we should ever be discredited because of that.

I don’t think we should ever be silenced because we are just children.

I feel that that is powerful, and it is one of the only reasons this movement is where it is right now. I am extremely, extremely angry and sad. And I don’t know if I’m going to be traumatized because of this. I don’t know if I’m gonna have faith in my state and local government anymore, because what I saw today was discouraging. But I want everybody here today to know we will not be discouraged. We will not falter. We will not stop this movement, because this is more than just us.

This is everybody in America. This is for every single kid who fears for their life. This is more than Parkland. This is more than Florida. This is more than the United States. This is something serious. This is about human lives. Please, I beg, and I demand that every single person in power who has the ability to change the fear that kids feel going back to school, that they do something.

Because I want everybody to know: I’m supposed to be going back to school — back to school in less than a week, and I’m not ready. I don’t think anybody here is ready. I don’t think anybody here is ready to go back to class and just have an empty seat, and you know that that empty seat is because — ’cause someone’s — 'cause someone’s dead, because somebody lost their lives. And I don’t know how I’m gonna cope with it. I’ve spoken to grief counselors, but grief counselors can only do so much. What we need is action. And we need it now, more than ever, because people are losing their lives, and it is still not being taken seriously.

I don’t know what it’s gonna take. I don’t know what it’s gonna take to get some people to realize, this is more than just reelections. This is more than just political gain. This is more than conspiracy theories and people trying to disqualify us from even having an opinion.

This matters to me more than anything else in my entire life, and I want everybody to know: I personally, I’m prepared to drop out of school. I am prepared to not worry about anything else besides this, because change might not come today. .

It might not come tomorrow. It might not even come March 24th when we March for our lives down in Washington. But it’s going to happen, and it’s going to happen before — in my lifetime because I will fight every single day — and I know everyone here will fight for the rest of their lives — to see sensible gun laws in this country and so that kids don’t have to fear going back to school. Thank you.

Edwin Cameron: 'HIV is a virus, not a crime', AIDS Conference - 2008

8 August 2008, Mexico City, Mexico

Justice Edwin Cameron is a Judge of the Constitutional Court of South Africa. He has lived with AIDS since the 1990s and is a passionate advocate for decriminalisation and destigmatisation of the disease.

Good morning, ladies and gentlemen.   It is an honour to be able to share an important issue with you in this plenary today.

Let me tell you what I want to do in the next twenty minutes.  

I want engage your minds, your feelings and your reactions, and I want to do so in three ways – through information, response and commitment:
·    First, I want to offer you information about one of the most serious issues in the epidemic at the moment – the use of criminal statutes and criminal prosecutions in the epidemic.
·    Then I will invite you to feel disquiet about what you know.
·    Lastly, I want us to consider resolving here, in this morning’s session, to engage in positive action about the issue.
Let me start by taking you to three very different places – to Texas, to Zimbabwe and to Sierra Leone.

In Texas, just three months ago, a homeless man was sent to jail.  He was convicted of a committing serious offence while being arrested for drunk and disorderly conduct – namely, harassing a public servant with a deadly weapon.  Because of his past encounters with the law, the system ratcheted up the gravity of what he did, and he ended up being sentenced to 35 years in jail – of which he must serve at least half before he can apply for parole.

Well, that’s very sad, you might say, but what is our concern with the case?  It is this.  The man had HIV.  The ‘deadly weapon’ he used against the public servant was his saliva.  He was jailed because he spat at the officers who were arresting him.

After sentencing, Officer Waller is reported to have said he was elated with the jury’s decision: ‘I know it sounds cliché[d], but this is why you lock someone up … Without him out there, our streets are a safer place.’

Let’s note some quick points about the case:

First, according to the most assured scientific knowledge we have, after nearly three decades studying the virus, saliva ‘has never been shown to result in transmission of HIV’.  

So the ‘deadly weapon’ the man was accused of wielding was no more than a toy pistol – and it wasn’t even loaded.  Ratcheting up the criminal law because the man had HIV was thus inappropriate, unscientific and plain wrong.

Second, we must note the length of the sentence.  Whatever his past conduct, it stuns the mind that someone who has not actually harmed anyone or damaged any property (or otherwise spoiled the world) could be locked away for 35 years. 

The inference that his HIV status played a significant, probably pivotal, part in sending him away for so long is unavoidable.  In short: the man was punished not for what he did, but for the virus he carried.

Let me take you now to violence-wracked Zimbabwe.  There, a 26 year old woman from a township near Bulawayo was arrested last year for having unprotected sex with her lover.  Like the homeless Texan, she was living with HIV.  The crime of which she was convicted was ‘deliberately infecting another person’.  

The strange thing is, her lover tested HIV negative.  The woman was receiving ARV therapy, so that is not surprising.  Before sentencing her, the court tried to get a further HIV test from the lover – even though reportedly he didn’t want to proceed with the charges at all.  She was eventually sentenced to a suspended term of five years’ imprisonment.  The threat of imprisonment, and the shame and ordeal of her conviction, will continue to hang over her.

Let me tell you about the statute under which she was convicted, s 79 of the Zimbabwe Criminal Law (Codification and Reform) Act 23 of 2004.  It is an extraordinary piece of legislation.  It doesn’t make it a crime merely for a person who knows that she has HIV to infect another.  It makes it a crime for anyone who realises ‘that there is a real risk or possibility’ that she might have HIV, to do ‘anything’ that she ‘realises involves a real risk or possibility of infecting another person with HIV’.  

In other words, though the crime is called ‘deliberate transmission of HIV’, this is a misnomer.  For you can commit this crime even if you do not transmit HIV.  In fact, you can commit the crime even if you do not have HIV.  You merely have to realise ‘that there is a real risk or possibility’ that you have HIV – and then do something – ‘anything’ – that involves ‘a real risk or possibility of infecting another person’.

Stranger upon strange, this statute offers a defence when a person really does has HIV.  In such a case, if the other person knew this, and consented, then the accused is exempt.  But, the way the statute is drafted, this defence can not apply where the accused does not in fact have HIV, or does not know that she has HIV – by definition, in that case she cannot engage the informed consent defence by telling her partner she has HIV!

In short, this law creates a crime not of effect and consequence, but of fear and possibility.

What is more, the wording of Zimbabwe law stretches wide enough to cover a pregnant woman who knows she has, or fears she may, have HIV.  For if she does ‘anything’ that involves a possibility of infecting another person – like, giving birth, or breast-feeding her newborn baby – the law could make her guilty of ‘deliberate transmission – even if her baby is not infected.

In all cases, the law prescribes punishment of up to twenty years in prison.

In Sierra Leone, lawmakers have gone even further.  They have avoided subtle lawyers’ arguments about whether their law applies to pregnant women.  So they have enacted a statute that removes all doubt.  Their law also creates an offence of ‘HIV transmission’, though it too criminalises exposure to HIV, even without transmission.  

The Sierra Leone law requires a person with HIV who is aware of the fact to ‘take all reasonable measures and precautions to prevent the transmission of HIV to others’ – and it expressly covers a pregnant woman.  It requires her to take reasonable measures to prevent transmitting HIV to her foetus.  No one doubts a mother’s will and duty to take reasonable steps to protect her baby, but the law will make it more difficult for her to do so.

In addition, a person with HIV who is aware of this fact must not knowingly or recklessly place another at risk of becoming infected with HIV, unless that person knew of the fact and voluntarily accepted the risk.  This, too, applies to pregnant mothers.

The provision criminalises not merely actual transmission of HIV from mother to child – but makes a criminal of any pregnant woman who knows she has HIV but does not take reasonable measures to prevent transmission to her baby.

I can carry on giving examples.  
·    In Egypt, Human Rights Watch reports that men are being arrested merely for having HIV under article 9(c) of Law 10/1961, which criminalizes the ‘habitual practice of debauchery [fujur]’ – a term used to penalize consensual homosexual conduct in Egyptian law.
·    In Singapore, a man with HIV has been sentenced to a year in prison for exposing a sexual partner to the virus – even though the risk to the partner (whom he fellated) was minimal, if not non-existent.  
·    In Bermuda, a man with HIV who had unprotected sex with his girlfriend has been sentenced to ten years’ imprisonment, even though he did not infect her.
·    In June 2008, the highest court in Switzerland held a man liable for negligently transmitting HIV to a sexual partner when he knew that a past partner had HIV, even though he believed, because he experienced no seroconversion symptoms, that he himself did not have HIV.

These laws are stunningly wide in their application, and fearsome in their effects.  They attack rational efforts to lessen the impact and spread of the epidemic with a sledge-hammer.  They represent a rash phenomenon that is taking place world-wide:
Ø    law-makers are putting on the statute books new laws that create special crimes of HIV transmission or exposure – in Africa, the continent that carries the heaviest burden of the epidemic, at least a dozen countries have already adopted laws similar to the Sierra Leone law (though not all of them expressly include pregnant women) – many countries have done so with the proud help of an American-funded organisation;
Ø    courts and prosecutors are targeting men and women with HIV for special prosecution.

These laws and prosecutions are creating a crisis in HIV management and prevention efforts – and they constitute one of the biggest issues in the epidemic right now.

Let us try to understand what lies behind criminalisation.  

HIV is a fearsome virus, and its effects are potentially deadly.  Public officials should be able to invoke any available and effective means to counter its spread.  This includes criminal statutes and criminal prosecutions.  Moreover, in the abstract and from a distance from social reality, there seems a certain justice that criminal penalties should be applied against those who negligently, recklessly or deliberately pass on the virus – even against those whose actions create only the risk of doing so.  

African lawmakers and policy-makers, in particular, have reason to look for strong remedies.  Many African countries face a massive epidemic with agonising social and economic costs:  all effective means, including the mechanisms of the criminal law and criminal prosecutions, must be in-spanned.

In addition, many lawmakers are spurred especially by the plight of woman.  Many (including very young women) are infected by unwary or unscrupulous men – they need especial protection, and a criminal statute may give best voice to their entitlement to protection.

But these reasons are bad.  Bad.  And they need to be countered, rationally, powerfully and systematically.

Let us start right here, this morning, by setting out the ten plainest reasons why criminal laws and criminal prosecutions make bad policy in the AIDS epidemic.

FIRST, criminalisation is ineffective.  These laws and prosecutions don’t prevent the spread of HIV.  In the majority of cases, the virus spreads when two people have consensual sex, neither of them knowing that one has HIV.  That will continue to happen, no matter what criminal laws are enacted, and what criminal remedies are enforced.  Criminalisation will not stand in the way of the vast majority of HIV transmissions.  

SECOND, criminal laws and criminal prosecutions are a shoddy and misguided substitute for measures that really protect those at risk of contracting HIV.  We know what we need in this epidemic.  After more than a quarter-century, we know very well.  We need effective prevention, protection against discrimination, reduced stigma, strong leadership and role models, greater access to testing, and, most importantly, treatment for those who, today, this morning, are unnecessarily dying of AIDS.  

AIDS is now a medically manageable condition.  It is a virus, not a crime, and we must reject interventions that suggest otherwise.

I speak with passion about this, since nearly eleven years ago, in November 1997, my life was given back to me by anti-retroviral therapy.  Since then I have been blessed to live a vigorous and productive life, and continue to enjoy excellent health with no few if any side-effects.

But I also speak without complacency and with a sense of fragile humility, since too many unnecessary deaths – especially in Africa – continue to occur.  

We must focus on ending deaths, on ending stigma, on ending discrimination, on ending suffering.  And on ending irrational, unhelpful and resource-reducing measures – like criminalisation.  

For the uninfected, we need greater protection for women, more secure social and economic status, enhancing their capacity to negotiate safer sex and to protect themselves from predatory sexual partners.  Criminal laws and prosecutions will not do that.  What they do, instead, is to distract us from reaching that goal.

THIRD, far from protecting women, criminalisation victimises and oppresses and endangers them.  In Africa most people who know their HIV status are female.  This is because most testing occurs at ante-natal healthcare sites.  The result, inevitably, is that most of those who will be prosecuted because they know – or ought to know – their HIV status will be women – like the Zimbabwe woman who now has a five-year prison sentence hanging over her.  

As the International Community of Women living with HIV and AIDS has pointed out in a powerful consultation process, many woman cannot disclose their status to their partners because they fear violent assault or exclusion from the home.  If a woman in this position continues a sexual relationship (whether consensually or not), she risks prosecution under the African model statutes for exposing her partners to HIV (even when she does not pass HIV on to him).  

The material circumstances in which many women find themselves – especially in Africa – make it difficult and all too often impossible for them to negotiate safer sex, or to discuss HIV at all.  These circumstances include social subordination, economic dependence and traditional systems of property and inheritance which make them dependent on men.  

These provisions will hit women hardest, and will expose them to assault, ostracism and further stigma.  They will become more vulnerable to HIV, not less.

FOURTH, criminalisation is often unfairly and selectively enforced.  Prosecutions and laws single out already vulnerable groups – like sex workers, men who have sex with men and, in European countries, black males.  

Women who are already marginalized, such as sex workers and drug users, are placed at risk of further targeting by government officials and agencies.  This targeting is made more acute by the fact that, thus far, these laws have been relatively rarely applied.  Such prosecutions as there have been, have resulted from individual and sometimes idiosyncratic decisions by particular police officers and prosecutors.  The fact is that, if we leave aside cases of deliberate transmission of HIV, the behaviour that is prosecuted – namely, sex between two consenting adults – is common.  The prosecutions there have been have therefore been necessarily arbitrary.

FIFTH, criminalisation places blame on one person instead of responsibility on two.  This is a hard but important thing to say.  HIV has been around for nearly three decades.  For nearly three decades the universal public information message has been that no one is exempt from it.  So the risk of getting HIV (or any sexually transmitted infection) must now be seen as an inescapable facet of having sex.  We cannot pretend that the risk is introduced into an otherwise safe encounter by the person who knows or should know he has HIV. The risk is part of the environment, and practical responsibility for safer sex practices rests on everyone who is able to exercise autonomy in deciding to have sex with another.

The person who passes on the virus may be ‘more guilty’ than the person who acquires it, but criminalisation unfairly and inappropriately places all the ‘blame’ on the person with HIV.  It is true (as I have pointed out) that the subordinate position of many women makes it impossible for them to negotiate safer sex.  When a woman has no choice about sex, and gets infected, her partner unquestionably deserves blame.  But the fact is that criminalisation does not help women in this position.  It simply places them at greater risk of victimisation.  Criminalisation singles one sexual partner out.  All too often, despite her greater vulnerability, it will be the woman.  Criminalisation compounds the evil, rather than combating it.

SIXTH, these laws are difficult and degrading to apply.  This is because they intrude on the intimacy and privacy of consensual sex.  I am not talking about non-consensual sex.  That is rape, and rape should always be prosecuted.  But where sex is between two consenting adult partners, the apparatus of proof and the necessary methodology of prosecution degrade the parties and debase the law.  The Zimbabwean woman again springs to our attention her: her lover wanted the prosecution withdrawn, but the law vetoed his wishes.  It also countermanded her interests.  The result is a tragedy for all, and a blight on HIV prevention and treatment efforts.

What is more, the legal concepts of negligence and even recklessness are incoherent in the realm of sexual behaviour, and incapable of truly just application.  No one suggests that a person knowing he has HIV, who sets out intending to infect another, and achieves his aim, ought to escape prosecution (such deliberately stabbing someone with an injecting needle containing blood with HIV). He has set out deliberately to harm another and he has achieved his purpose as surely as if he had wounded his victim with a firearm or a knife.  

But in cases where there is no deliberate intention, the categories and distinctions of the criminal law become fuzzy and incapable of offering clear guidance – to those affected by the laws and to prosecutors.  Some laws target ‘reckless’ or ‘negligent’ transmission of or exposure to HIV.  Others advocate criminalising ‘reckless’ transmission of or exposure to HIV.  We know that the ‘reasonable person’ often has unprotected sex with partners of unknown sexual history in spite of the known risks – that’s why we have an HIV epidemic, and that’s why interventions to reduce unsafe sex are so important.  

When it comes to sex, with its potent elements of need, want, trust, passion, shame, fear, risk and heedlessness, normal, reasonable people simply do not always follow public health guidelines.  With the best of intentions, they may make assumptions (suggesting condom use = “I am HIV+”), avoid issues (no need to disclose if we just do oral sex), or just hope for the best. HIV is a risk, but it is balanced in both parties’ minds by the possibility of pleasure, excitement, closeness, material or social gain, and maybe love. That, for better or worse, is customary –  yes, reasonable – behaviour.  

But in court, looking back (especially looking back at an encounter where the worst outcome happened), a different standard is applied.  

As Matthew Weait’s insightful account of British prosecutions has shown, the risk of HIV is treated as inherently unreasonable, and the decision of the putative victim to run the risk is

It is simply unfair to judge people, particularly a more or less arbitrarily selected small segment of the population, by legal standards of sexual behaviour that bear little relation to the standards of behaviour in real life.

SEVENTH, many of these laws are extremely poorly drafted.  Partly because it is difficult to prove an offence that involves consensual sex, and because of the difficulties of applying the categories of the criminal law, many of these laws end up being a hodge-podge of confused legislative intent and bad drafting.  

For instance, under the ‘model law’ that many countries in east and west Africa have adopted, a person who is aware of being infected with HIV must inform ‘any sexual contact in advance’ of this fact.  But the law does not say what ‘any sexual contact’ is.  Is it holding hands?  Kissing?  Or only more intimate forms of exploratory contact?  Or does it apply only to penetrative intercourse?  The law does not say.  

What it also does not say is what ‘in advance’ means.  Must it be before any sexual contact is initiated?  Or is it only before actual intercourse occurs?  Will people be prosecuted for intimate conduct intended to lead up to intercourse?  We do not know.  The laws do not say.  Worse, millions of West and East Africans who must now live their lives under fear of prosecution by this law do not know.  

The ‘model’ law would not pass muster in any constitutional state where the rule of law applies.  The rule of law requires clarity in advance on the meaning of criminal provisions and the boundaries of criminal liability.  

But who will venture to challenge the laws as they have been enacted in eleven countries?  Perhaps there will be challenge in Kenya.  But until someone does, the terrifyingly vague provisions remain on the statute books.

EIGHTH, and perhaps most painfully to those of us living with HIV, criminalisation increases stigma.  From the first diagnosis of AIDS 27 years ago, HIV has carried a mountainous burden of stigma.  This has been for one over-riding reason: the fact that it is sexually transmitted.  No other infectious disease is viewed with as much fear and repugnance as HIV is.  

Because of this, stigma lies at the heart of the experience of every person living with or at risk HIV.

It is stigma that makes those at risk of HIV reluctant to be tested; it is stigma that makes it difficult – and often impossible – for them to speak about their infection; and it is stigma that continues to hinder access to the life-saving ARV therapies that are now increasingly available across Africa.

Legislators bewildered, or baffled, or at a loss as to how to respond effectively to the epidemic may be seduced into taking recourse to criminalisation, because it seems attractive, effective and media-friendly.

But it is not prevention- or treatment-friendly.  It is hostile to both.

This is because, tragically, it is stigma that lies primarily behind the drive to criminalisation.  It is stigma, rooted in the moralism that arises from the sexual transmission of HIV, that too often provides the main impulse behind the enactment of these laws.  

Even more tragically, such laws and prosecutions in turn only add fuel to the fires of stigma.

Prosecutions for HIV transmission and exposure, and the chilling content of the enactments themselves, reinforce the idea of HIV as a shameful, disgraceful, unworthy condition, requiring isolation and ostracism.

But HIV is a virus, not a crime.  That fact is elementary, and all-important.  Law-makers and prosecutors overlook it.  

We must fight this new burden of moralising stigma and persuade them of how wrong their approach is.

NINTH, criminalisation is a blatant dis-inducement to testing.  It is radically incompatible with a public health strategy that seeks to encourage people to come forward to find out their HIV status.  AIDS is now a medically manageable disease.  Across Africa, the life-saving drugs that suppress the virus and restore the body to health are becoming increasingly available.  

But why should any woman in Kenya want to find out her HIV status, when her knowledge can only expose her to risk of prosecution?  The laws put diagnosis, treatment, help and support further out of her reach.

By reinforcing stigma, by using the weapons of fear and blame and recrimination, criminalisation makes it more difficult for those with or at risk of HIV to access testing, to talk about diagnosis with HIV, and to receive treatment and support.

We therefore have a dire but unavoidable calculus: these laws will lead to more deaths, more suffering and greater debilitation from AIDS.

Criminalisation is costing lives.  

The International Community of Women with HIV and AIDS has rightly described laws like this as part of a ‘war on women’.

They are not just a war on women.  They are a war on all people with HIV, and they constitute an assault on good sense and rationality in dealing with the epidemic.

The rush to legislation has resulted in rash, inappropriate and in all too many cases excessive laws.

The laws often constitute an assault not just on civil liberties, but on rational and effective interventions in the epidemic.

And this brings us to the TENTH and last point, which is about belief, and hope – words all too seldom heard in this epidemic.  Criminalisation assumes the worst about people with HIV, and in doing so it punishes vulnerability.  The human rights approach assumes the best about people with HIV and supports empowerment.  

As Justice Michael Kirby – who powerfully lights a pathway of justice and hope and reason in this epidemic – has argued, countries with human rights laws that encourage the undiagnosed to test for HIV do much better at containing the epidemic than those that have ‘adopted punitive, moralistic, denialist strategies, including those relying on the criminal law as a sanction’.

The prevention of HIV is not just a technical challenge for public health. It is a challenge to all humanity to create a world in which behaving safely is truly feasible, is safe for both sexual partners, and genuinely rewarding.  

When condoms are available, when women have the power to use them, when those with HIV or at risk of it can get testing and treatment, when they are not afraid of stigma, ostracism and discrimination, they are far more likely to be able to act consistently for their own safety and that of others.   

The global consensus on human rights and the enabling environment captures this positive vision of HIV prevention.  When compared with the punitive and angry approach embodied in criminalisation, is clearly more important now than ever.

The principal effect of criminalisation is to enhance stigma, fear, isolation, and the dread of persecution and ostracism that drives people away from treatment.

Let us use our plenary meeting this morning to send out a firm and clear message:–
·    Criminalisation is a poor tool for regulating HIV infection and transmission;
·    there is no public health rationale for invoking criminal law sanctions against those who unintentionally transmit HIV or expose others to it;
·    the sole rationale for criminalisation is the criminal law goal of retribution and punishment – but that is a poor and distorted aim for public health law;
·    Criminalisation is in general warranted only in cases where someone sets out, well knowing he has HIV, to infect another person, and achieves this aim.

In other cases, we are left with the sad burdens, but also the hopeful initiatives, that are available to us in this epidemic.  

Let today be the start of a campaign against criminalisation.  

Let one of the conference outcomes be a major international push-back against misguided criminal laws and prosecutions.

Let us return to our countries, determined to persuade law-makers and prosecuting authorities of the folly and distraction of criminalisation.  Let us return strengthened in our resolve to fight AGAINST stigma, against discrimination, and against criminalisation – and to fight FOR justice, good sense, effective prevention measures and for access to treatment.

Edwin Cameron: 'The biggest problem is stigma. Stigma, stigma, stigma, stigma!'21st Annual AIDS Conference - 2016

17 July 2016, Durban, South Africa

I'm really very, very pleased to be here today and I'm very, very pleased that this has taken place. This is an issue which should have a greater prominence in this conference.

We know that the central issue in this epidemic- we know medically and socially, what to do. We know what to do. We know that HIV can be medically managed. I've been on antiretrovirals for almost 19 years. I'm fitter and healthier than I was in 1997. We've got the world's biggest antiretroviral treatment program publicly provided in South Africa. We know that if we can get to enough people, the algorithm showed, if we can get everyone tested and everyone treated, in South Africa, we've committed from September to two important things: Which is to treat everyone with HIV and secondly, as importantly, to give sex workers pre-exposure prophylaxis. Are there any sex workers here?

Audience member: Yes!

Well done, ma'am!

I'm so proud of you. And I'm proud of our country. I'm proud of our country, that we're going to be providing people whose work is one of the most difficult and dangerous, and despised occupations, and one that deserves our support and our respect and our love with pre-exposure prophylaxis.

All of that we know. We even know how we can try to persuade people. Prevention is more difficult. We don't know what to do about prevention, ladies and gentlemen. I always refer to the fact that by 196 1- 10 year after Sir Richard Doll published his ground breaking articles inThe Lancet and the British Journal of Medicine about the link between cancer and cardiopulmonary disease and smoking - by the end of that decade, the governments of North America and Western Europe had accepted that smoking causes cancer. Smoking in the United States - 44%. Where is smoking in the United States now, anyone tell me?

Eighteen percent

So don't tell me ... Don't come to Africa and say, "Why don't those girls in the townships just use condoms? 'Cause we're talking about health seeking behaviour, we're talking about health seeking choices. So, I accept prevention from the broad mind that we know how to manage it, but medically and otherwise, physiologically, virologically, we know exactly what to do.

The biggest problem is stigma. Stigma, stigma, stigma, stigma. Stigma remains a barrier to prevention, it remains a barrier to behaviour change, it remains a barrier to people accessing treatment. Stigma is causing deaths, we know that. Because people are too scared to test. We, in this country, still have between 150,000 and 180,000 deaths from HIV every year, linked often with TB, also an intractably hard disease, much more medically difficult to deal with than HIV. But the cause of the undiagnosed cases of HIV, the cause of the untreated cases of AIDS is stigma.

Beyond Blame has offered today a rare and a crucial opportunity to build the movement that tackles that stigma frontally. Back in 2008, on the final day of the International AIDS Conference in Mexico, I called for a sustained and vocal campaign against HIV criminaliation. Along with many other activists, I hoped that that conference eight years ago would result in a major international resistance movement to misguided criminallaws and prosecution. And I want to credit Edwin J. Bernard, have you got credit today, Edwin? Come and stand in the front. Have you got credit?

Edwin Bernard:

Thank you.

The difference between me and activists like Edwin is that they don't get the judicial salary and the free car. So you take all the credit, Edwin. I really, really honestly mean that. And you working with us, you, ladies and gentlemen, are working with us 24 hours a day, 7 days a week. I bring honour and credit to you for doing that in difficult circumstances.

The work of HIV Justice Worldwide, who put together this conference, shows how far we've come. The fact that you had such a successful meeting is itself, a signal of our success.

The movement against these laws and prosecutions, which started a decade ago, is really gaining strength and some heartening outcomes. As you've heard today, laws are being repealed, they've be enmodernised, they've been struck down. From Kenya to Switzerland, from the state of Victoria in Australia, to the state of Colorado in the United States.

I've been living with HIV for over 30 years, ladies and gentlemen. It is especially fitting for me to be able to note that much of the necessary advocacy for this, has been undertaken by civil society. Can I ask, how many government officials are there in the room today? Put up your hands. There, we've outed you, sir!

We're very proud of you. One government official; we pay honour to you. Thank you for coming. And you too, ma'am. Three. Yep, three government officials. The fact is, ladies and gentlemen, you are civil society activists ... every single major breakthrough for treatment, for governmental action against criminal laws, against stigma, has been driven by civil society activists.

Since the beginning of the HIV epidemic 35 long years ago, policy makers and politicians had been under sore temptation to punish us for the fact that we have HIV. Sometimes they have been propelled by public opinion. Sometimes they themselves have not justly propelled public opinion. But they've tried to find, in punitive approaches, a quick solution.

There's no quick solution, ladies and gentlemen. And one way has been this particularly hyper stigmatising way of HIV criminalisation: criminal laws against people living with HIV who don't declare that they have HIV, or to make potential or perceived exposure or transmission that occurs, when it is not deliberate, criminal offences.

Most of these laws are appallingly broad. I've been working this week with Section 79 of the Zimbabwe Criminal Code. Where are our Zimbabwean brothers and sisters?

Is there anyone here who was involved in the case of Pitty Mpofu? I'll come to it in a moment. But appallingly broad. If you do anything that puts anyone at risk of HIV exposure, you are guilty of deliberate transmission of HIV. We've heard today on the panel, I believe, very moving accounts, deeply moving accounts about people who have survived the hyper stigmatsing assault of these laws. We also know a very helpful fact, ladies and gentlemen, that scientific evidence about how HIV is transmitted and how low the risk of transmitting the virus is, is the key way.

People come to South Africa and they speak about President Mbeki, who disregarded evidence, who would not accept the overwhelming scientific proof that HIV caused AIDS, and much more importantly, that if AIDS was virally caused, if its aetiology was viral, that you could treat it. And they look condescendingly at President Mbeki - but Western governments all over, Australia, North America and the rest of Africa, African governments, in equal measure to President Mbeki, are ignoring scientific evidence.

The last 20 years has seen a massive shift in the management of HIV. It is now completely medically manageable, as I've said. I was dying of AIDS 19 years ago in November 1997. I had access to antiretroviral treatment.

Nineteen years later, as I've said, I'm stronger than I was as a younger man then. Despite thisprogress, despite the progress in prevention, treatment, and care, that overwhelming issue remains, which is stigma. And I want to mention a difficult issue and an important issue, which is the internalised form of stigma.

I'm glad that there is going to be quite a lot of attention here. Ladies and gentlemen, internalised stigma is when we as people with HIV or at risk of it, take deeply within,to the recesses of our own consciousness and subconsciousness, the hatred, the ostracism, the fear, the rejection, the prejudice, the discrimination of the external world, and that often is a causative effect when people don't get treatment, when they don't get testing. It's a hard phenomenon to describe. It's hard to act against but its powerful effect on our epidemic must be recognised.

The enactment and enforcement of laws that criminalise HIV, even the threat of their enforcement, fuels the fires of stigma. It fuels the fires of internalised stigma. It reinforces the idea, both externally and internally of those with HIV and at risk of it,that HIV is shameful, that it is a contamination, that it is disgraceful, that thosewho have it are criminals, that they're vectors for passing on the disease. And by reinforcing stigma, HIV criminalisation makes it much more difficult for those at risk of HIV to access testing and prevention. It makes it more difficult for them to talk openly about living with the virus and to be tested and to be treated and to be counselled to behavioural change. I know that I'm preaching to the converted here, but HIV criminalisation is profoundly bad policy. There is no evidence that it works. Instead, it sends out misleading and stigmatising messages. It undermines the remarkable scientific advances and proven public health strategies that we know are effective in dealing with this epidemic.

In 1997, the Chair of the Justice Portfolio Committee in South Africa's Parliament, Mr. Johnny de Lange , called for laws to criminalise HIV. Our epidemic was burgeoning. Treatment was not yet available except to the privileged few like me, who fell severely ill at the end of that year. And of course, you take the easy fix. You pass a law. You pass a law that targets those with HIV. Mr. De Lange was a powerful man. He steered a lot of laws through Parliament at that time, including our version of minimum sentencing laws, which are now being reconsidered in America but not yet reconsidered here. He steered unbailable offences laws through Parliament. He did a lot of legislative steering.

But very fortunately, the matter was referred to a committee of the South African Law Reform Commission, which was chaired at the time by Justice Ismail Mahomed. He asked me to chair the committee, and one of our projects was a project on the criminalisation of HIV. It's worth getting the report, ladies and gentlemen. I don't say this in vanity, because most of the work was done by a superb lawyer and researcher at the Law Reform Commission called Anna-Marie Havenga, so I claim no credit for the report. I claim credit for editing it and for steering it. But that report is worth downloading. It's a 200 - page report that exhaustively looks at all the options. It's 20 years old now, 18 years old, but we decided against criminalisation.

You know what was the pivotal breakthrough? We had a two-day conference where we called all the civil society organisations together in Pretoria to debate this issue. We called especially the organisations dealing with women and with children's rights. We called those who sought protection for women, who sought the prevention of paediatric HIV, and we realised by the end of the second day, we had a unanimous consensus that these laws were bad for women. They were bad for children. That those targeted by these laws are the women themselves, and it's been borne out. Many of the first prosecutions in Africa had been prosecutions of women. The first prosecution under Section 79 of the Zimbabwe Criminal Law Amendment Act, which I've mentioned before, was of a woman, when her partner went and laid a charge against her.

So we decided against it Ladies and gentlemen, I just want to be rude about Canada. Let me summarise. Where's Richard? It's so nice to be rude about Canada. Even though Richard [Elliot, Executive Director of the Canadian HIV/AIDS Legal Network] tried to make Canada sensible,

There's been a decision recently of the Zimbabwe Constitutional Court, a full panel of seven judges where they refused to declare this appalling law .... It's an appallingly broad and vague law. They said they're not going to rule it unconstitutional. And the premise is that everyone with HIV has got to disclose. I want to give you the quote. Paragraph 12 of the judgement:

“Public policy requires of a person with HIV that he make full disclosure to his intended partner, in order to afford that partner the opportunity to make an informed decision." Ladiesand gentleman, I ask why? Why? Why does someone with HIV, either who's on treatment or who's going to take appropriate prevention measures, have to disclose? That's the premise. And that - Richard Elliott, I won't make you stand - is the premise of[the] Mabior [decision].

Obviously it's shameful. Did I say shameful? A bad, bad, bad, bad, bad unanimous decision of the Canadian Supreme Court, which I equate with the judgement andthe reasoning in State vs Pitty Mpofu. Pitty Mpofu's challenge failed. And Mabior ... Mr. Mabior did not transmit HIV. He was on successful antiretroviral therapy. He did not disclose his HIV. He was found, in effect, guilty of rape, because he didn't disclose.

Richard, you argued the case; I honour you and the Canadian HIV/AIDS Legal Network for your valiant attempts. I was in Canada just before the case was argued. Was it 2012? And you were full of hope. You werefull of hope. We now know there's been a study released last week, which shows that 58,000 instances of serodiscordant intercourse have not led to a single transmission of HIV. That was known to the nine justices of the Supreme Court of Canada at the time, but the evidence has been mounting up even more incontrovertibly, since then.

Ladies and gentlemen, let me wrap up. I want to congratulate you for being at this conference today. I want you to feel energised. I want you to feel informed and empowered and energised to take out into this conference today the message of today's meeting. And when Edwin and I were debating what I should say, I wanted to add something to his suggestions for my speech. And what I wanted to add was the fact that we must not let our administrators and officials and politicians arrive at this conference. They arrive, ladies and gentleman, with cars. And they arrive with delegations. And they go back to their countries, 30 of them in Africa, with criminal laws that target us irrationally, unscientifically, stigma enhancingly, stigma magnifyingly.

We must not allow them that peace and comfort. We must challenge them.

We must take the message of this conference out of your meeting today into the halls, into the podiums, and into the individual meetings with those people. Find the ministers and the officials from the African countries that target. We have suffered no harm in this country, because we didn't stigmatise. We did the right thing.

Those countries must do the right thing. They must repeal those laws. And your energy today, your vision, andyour activism, will make sure that that happens. Thank you

Zach Wahls: 'The sexual orientation of my parents has had zero effect on the content of my character', Opposition to House Joint Resolution 6 Banning Civil Unions - 2011

1 February 2011, Iowa State House, Dew Moines, Iowa, USA

Good evening Mr. Chairman. My name is Zach Wahls. I'm a sixth-generation Iowan and an engineering student at the University of Iowa and I was raised by two women.

My biological mom, Terry, told her grandparents that she was pregnant, that the artificial insemination had worked, and they wouldn't even acknowledge it.

It wasn't until I was born and they succumbed to my infantile cuteness that they broke down and told her that they were thrilled to have another grandson.

Unfortunately, neither of them lived to see her marry her partner Jackie of 15 years when they wed in 2009.

My younger sister and only sibling was born in 1994. We actually have the same anonymous donor so we're full siblings, which is really cool for me.

I guess the point is our family really isn't so different from any other Iowa family. You know, when I'm home we go to church together, we eat dinner, we go on vacations. But, you know, we have our hard times too, we get in fights...

Actually my mom, Terry was diagnosed with Multiple Sclerosis in 2000. It is a devastating disease that put her in a wheelchair. So we've had our struggles.

But, you know, we're Iowans. We don't expect anyone to solve our problems for us. We'll fight our own battles. We just hope for equal and fair treatment from our government.

Being a student at the University of Iowa, the topic of same sex marriage comes up quite frequently in classroom discussions... The question always comes down to, well, "Can gays even raise kids?"

...The conversation gets quiet for a moment because most people don't really have any answer. And then I raise my hand and say, "Actually, I was raised by a gay couple, and I'm doing pretty well."

I scored in the 99th percentile on the ACT. I'm actually an Eagle Scout. I own and operate my own small business. If I was your son, Mr. Chairman, I believe I'd make you very proud.

I'm not really so different from any of your children. My family really isn't so different from yours. After all, your family doesn't derive its sense of worth from being told by the state: "You're married. Congratulations."

No. The sense of family comes from the commitment we make to each other. To work through the hard times so we can enjoy the good ones. It comes from the love that binds us. That's what makes a family.

So what you're voting here isn't to change us. It's not to change our families, it's to change how the law views us; how the law treats us.

You are voting for the first time in the history of our state to codify discrimination into our constitution, a constitution that but for the proposed amendment, is the least amended constitution in the United States of America.

You are telling Iowans that some among you are second-class citizens who do not have the right to marry the person you love.

So will this vote affect my family?

Would it affect yours?

In the next two hours I'm sure we're going to hear plenty of testimony about how damaging having gay parents is on kids.

But in my 19 years, not once have I ever been confronted by an individual who realized independently that I was raised by a gay couple.

And you know why? Because the sexual orientation of my parents has had zero effect on the content of my character.

Thank you very much.

Andrew Denton: 'Watching my father, Kit, die remains the most profoundly shocking experience of my life', National Press Club - 2016

10 August 2016, National Press Club, Canberra, Australia

I’ve come here today to try and light a fire.

Let me strike the first spark by telling you the story of 90-year-old South Australian Eileen Dawe. As she was dying of cancer last year, Eileen kept a diary. Despite her clearly-stated wish to die she was forced to endure 17 painful weeks until the disease finally took her. Hoping to hasten nature’s course she began to starve herself to death. In her diary she wrote “My country’s laws decree ‘Death by a thousand cuts for me’”. 

If you've ever dieted for a week you know how unpleasant that is. Imagine a month of it. Or more. Weaker and weaker, with all the unpleasantness of starvation PLUS the symptoms of her cancer. Weaker still, and still not dead. 

How can our laws allow such a thing? Not just allow but insist on it. And why – despite polls which consistently show Australians overwhelmingly support a law that would have helped Eileen to die humanely - has no Australian parliament responded to the public will?

I’m going to come back to that, but first a quick rundown of how I get to be standing in front of you today. The two-times failed Gold Logie nominee now deeply engaged in what is literally a life and death issue.

Watching my father, Kit, die remains the most profoundly shocking experience of my life.

He was 67, and though clearly dying of heart failure, and obviously in great pain, dad was assisted to die in the only way that Australia’s law then (and now) would allow: He was given ever-increasing doses of sedatives, to settle the pain.

When your heart fails, fluid backs up in your lungs and you spend all day, every day, fighting for breath. Its like waterboarding - trying to suck air through a damp mask, drowning and being revived again. Of course Morphine couldn't relieve his distress. Not his and not ours. He never got a high enough dose to actually kill him. The images of those final days will never be erased.

That was 19 years ago. In the years since, whenever I’ve talked about it, I’ve been struck by how many respond with similar stories about people they love dying slowly, in pain, and, and sometimes terror, while being denied proper medical help.

So 18 months ago I set out to discover why good people are being forced to die bad deaths.  

I travelled to places where laws to assist dying have been operating successfully for many years… to Belgium, The Netherlands and Oregon.

I discovered that, contrary to what I had heard in Australia, it IS possible to construct laws with strong safeguards and protections.  I discovered that after up to 20 years living with these laws, they have strong and widespread public support; that the fears have not been realised. There is no slippery slope.

I discovered families profoundly grateful that, thanks to these laws, people they loved had been offered a choice, and the reassurance of control, over what would, otherwise, have been cruel, lingering deaths.

Perhaps most significantly of all, I discovered a golden rule that applies the world over:  And that is most people do not want to die.  They will do just about anything to stay alive, to be with family, to celebrate a grandchild’s birthday, to wake up and marvel at the beauty of a sunrise.

Take Oregon, where the number of people legally helped to end their life is less than 0.5% of all deaths annually. By law they must be dying of a terminal illness to be prescribed life-ending medicine. Yet nearly 40% of them choose, in the end, not to take it.

People give up only because the suffering or the daily loss of dignity they experience every day means they that for them there is, indeed, something worse than death.

I documented this journey of discovery in a podcast series called Better Off Dead -- 17 episodes in all, culminating in a call from Bob Hawke for Australia to introduce assisted dying laws.

It’s still available freely online but what’s changed since I launched the series earlier this year is that both Canada and California have enacted their own voluntary assisted dying laws. Meaning there are now over 100 million people in the world who have full choice about what happens to them at the end of their life.

None of them Australians.

It’s not that we lack the desire: polls show support for voluntary euthanasia in this country consistently runs at over 70 pc. It’s not that we lack the wit - I mean we’ve done it before. It was Australia which enacted the world’s first assisted dying law.

Many of you will remember - the Northern Territory, 20 years ago, and the first man to use it was a 66-year old Darwin carpenter called Bob Dent, dying from prostate cancer.  Both his testicles had been removed, he’d lost 25 kilograms, wore a catheter and leg bag and, as he said himself, couldn’t get a hug in case his ribs cracked.

Under that law, Bob and 3 others got the release they so desperately wanted – but in less than a year, the Howard government overturned not the law itself, but the law which permitted Territories to make such laws.  Just to make sure. 

“One of the most effective political campaigns in recent history” is how Fairfax’s Michael Gordon described it at the time. “It is also the story of a network - all the principals are Catholics - its influential connections, its single-mindedness and the tactics it employed”

A network which kept its profile so low …”as to be almost subterranean”. This, Gordon wrote, was “an integral component of the strategy”

We’ll come back to those subterranean forces. As I have discovered – they are still with us, working against the clear popular will for assisted dying laws. Using the old, crude but sadly effective weapons of denial and deception.

But first, let’s look at the consequence of their work. Let’s face the truth about what’s actually happening across our country in the absence of such laws. The Damage Done – as we’ve titled this book – describes the landscape with shocking clarity.

The daughter whose dying mother beseeches her to end the pain … who actually picks up the pillow, and hovers above that loved face .. but reels away, unable to go through with it.  We can name that daughter: she was TV journalist Tracy Spicer.

The grandfather so wracked by late-stage cancer he writes a farewell message on his “TO DO TODAY” pad before hanging himself on the clothes line behind the house.  His name’s Ken. Here’s the note. The son who found his body has Downs Syndrome.

A woman dying of Motor Neurone Disease, desperate for release but too ill to fly to a jurisdiction with kinder laws “It’s so much worse than I imagined”, she scrawls on a blackboard, and asks her friend Elisabeth to make sure these words are seen. Her own contribution to law reform.

Just 3 of the 72 testimonies within. Written by the dying and their loved ones; detailing trauma and suffering on a staggering scale.

These testimonies come from people aged 14 to 100 and from all walks of life. They represent almost every Australian State and Territory. They are blue collar, white collar, devoutly religious, avowedly not. The diseases they have faced are mostly cancer, but also MS, Motor Neurone Disease and other medical horrors.

What brings them together is the cruel way they all suffered – or suffer still, with descriptions such as “akin to torture” and “like a horror movie”. What strikes the reader are the repeated expressions from those left behind of shock, anger, and helplessness, sometimes reaching back decades.

Perhaps bravest of all are the testimonies from doctors and nurses, some of whom openly admit to committing the crime of assisting a patient to die. The trauma many of them have had to deal with in the face of their patients’ suffering is palpable. The guilt others still feel because the law forbade them from helping, just as keen.

Had the abuses, cruelty, and harm inflicted by our laws, and so vividly captured in this book, happened within one institution, our politicians would surely have acted on them long ago.

But because they have happened in many places – palliative care wards, nursing homes, general hospitals, people’s houses – and because each has been a private tragedy, they have been invisible. Ignorable. Deniable.

What is undeniable is that desperate people take desperate measures. And here we turn away from anecdote and private pain to the formal findings of the cross-party Victorian Parliamentary Inquiry into End of Life Choices, the most extensive inquiry of its kind ever held in Australia, which reported in June this year. And which mirrored the anguished testimonies listed here.

It found repeated examples of inadequate pain relief and of deep suffering beyond the reach, even, of palliative care. It found doctors breaking the law and relatives being put on trial to relieve the torment of their patients and loved ones. Most shocking was the testimony of Victorian Coroner, John Olle, who detailed the horrific ways in which desperately ill Victorians were – are -  taking their own lives to end their suffering.

His evidence rocked the Committee, and was so distressing the Coroner had to collect himself three times while speaking – including the case of a 90-year-old man with cancer who killed himself by repeatedly firing a nail gun into his head and chest. Coroner Olle went out of his way to stress that these were people without a history of mental illness, from loving families, faced with the slow, ‘irreversible decline’ of chronic disease.

He said his office saw no way of preventing these deaths, quoting directly: 

“To my knowledge the people we are talking about have made an absolute clear decision. The only assistance that could be offered is to meet their wishes, not to prolong their life”

He estimated the number of elderly Victorians dying in this way - by suicide to escape the ravages of disease - at 1 a week.

Faced with such evidence, the Committee found that maintaining the status quo was unacceptable and this was a clear case for law reform.

Its recommendation, by a majority of 6-2, was that voluntary assisted dying - with strong safeguards - be introduced as another option at the end of life.

How, you might ask, can all this evidence – all these experiences, all this torment– not lead to a change of the law in this country? How can we turn our backs on what we know is happening, this terrible and widespread suffering?

Well, let us see how it happened last time. 

~ - ~ - ~

The story of how the Northern Territory law came to be repealed by Parliament bears repeating, because the forces that stopped it then are still in play.

The joint operation was led on the Liberal side by a young Kevin Andrews – a leading member of the conservative Lyons Forum, dubbed by some the “God Squad” – who worked in tandem with rising Labor star Tony Burke.  Only 25 and not even in the Federal parliament, Tony was an ambitious young foot soldier with the Shop, Distributive and Allied Employees Union.

They were supported by a grouping of conservative politicians, from both parties.  Their campaign was also given significant extra-parliamentary support from two wealthy and well connected Catholic businessmen.

Looking back now, two things are striking.

First is that on the questions that are most fundamental to how we live, love and die, religious belief trumps everything.  This is the theocracy hidden inside our democracy.

Second is that what Kevin Andrews and Tony Burke engineered was an outright denial of the will of the people of the Northern Territory, as expressed through their elected representatives.

It’s an issue where denialism is still rampant today. Denial of the public will. Denial of the evidence.

I learned first hand how this works when I attended an international conference hosted by the HOPE anti-euthanasia organisation in Adelaide last year. Convened by a one-time senior officer of the Catholic Archdiocese of Adelaide, the conference heard a lot about how to influence politicians. This was how former New Hampshire legislator Nancy Elliott, spelt out the tactics that had worked for her in the States.

“When you have lots of arguments,” she said, “if one argument gets blown out of the water, you still have more, and each argument will reach somebody else”

For instance, one way to oppose assisted dying is to suggest it is a threat to disabled people. I'll explain why this is untrue later, but as Nancy enthused: “Right now the disability argument is really kicking it. It's very powerful. Will it always be powerful? We don't know. Two, three, four years from now that may have holes kicked in it, just for different reasons, so we have to be flexible.”

Citing elder abuse and suicide contagion as other possible arguments, she went on to say: “You only have to convince legislators that they don't want this bill. You don't have to win their hearts and minds; all you have to do is get them to say, ‘Not this bill’, and then you have got your win”

I call these tactics FUD….Fear, Uncertainty, Doubt. Sow one seed of FUD and you can reap a harvest of political inaction. Just scare the hell out of people. Without ever engaging with the evidence accumulated over 20 years in countries with assisted dying laws.

And here it is: ONE, the majority of the people who access these laws overseas are dying of cancer, and are in the last weeks, or even days of their lives.

TWO, the groups most in need of protection from abuse under these laws – the elderly and the disabled – have faced no increased risk under them.

THREE, these laws have not adversely affected the relationship between patients and doctors but in fact, its opposite.

And FOUR, that there is a powerful palliative effect in simply giving people the means of ending the horror. Some sense of control. Even if they choose not to use it.

This evidence is overwhelmingly accepted by the people, medical professions, media, courts, and parliaments in the places where these laws exist.

If you aren’t even going to proceed on the basis of evidence, what are you doing? You’re engaging in a deliberate strategy of denialism and the propagation of myths.

Myths that have been planted in the minds of many as the truth because, at face value, they sound plausible. I went to test them.

Myth 1. The slippery slope.

The idea being that, once you write a law to assist people to die, there is no way of controlling it. Let me take that face on. It’s such a potent and alarming proposition, I searched assiduously for credible evidence of it in countries with assisted dying laws - and found none.

Nor did the Victorian Committee, which travelled overseas to the same countries to speak with doctors, medical and legal experts, palliative care specialists, disability rights groups, and opponents of these laws, to see how they were working. Instead, they found:

 rigorous safeguards, monitoring procedures and high levels of compliance sitting within robust regulatory frameworks focussed on transparency, patient-centred care and choice. 

Instances of assisted dying are rare, they reported, and assistance in dying is, in the vast majority of cases, provided to people in what would otherwise be the final weeks of their lives. 

They concluded: We found no evidence of institutional corrosion or the often cited ‘slippery slope’. 

Neither did the Quebec Select Committee before them, which spent two years on its own investigation before recommending for a law on assisted dying. It reached the same conclusion as Victoria: no slippery slope … and tiny numbers of people using the law.

The numbers? In The Netherlands, according to official data accepted by their Parliament, those assisted to die comprises less than 4% of all deaths each year. In Belgium, it’s less than 2%. And in Oregon, remember, it’s less than half of one percent.

In all three places, after decades of operation, public support for these laws is in excess of 80%; opposition under 10%. All these numbers have been stable for many years.

So let’s say it clear, and move on: no slippery slope.

Myth 2. No law can be written to safeguard the vulnerable.

The most frequent dog-whistle used by opponents of assisted dying. The insinuation that those most vulnerable in our society, the elderly and the disabled, will be coerced to die under these laws because they have become a ‘burden’.

As Archbishop, Anthony Fisher, so cleverly put it at a public debate last year:  Putting granny out of her misery so easily becomes putting granny out of ours.

As with the slippery slope, there is no credible evidence from overseas to support this. Rather, there’s a mountain of widely accepted, publicly available, peer-reviewed, evidence to disprove it.

Representatives of peak elderly and disability groups who I spoke with in Belgium, The Netherlands and Oregon reported no abuse – or threat of abuse – to their members in all the years these laws have operated.

Australian palliative care physician Dr Linda Sheahan used her 2012 Churchill Fellowship to explore how these laws work overseas. Not an advocate for assisted dying - but an advocate for an informed debate about it - Dr Sheahan concluded:

The Slippery Slope in terms of risk to vulnerable groups has not been demonstrated by the data.

Why? Because once you understand how these laws work you understand how they protect the vulnerable. More on that later.

Myth 3. If things get bad doctors will help you anyway.

They might and, as the Victorian Committee found, some Australian doctors do. I suspect many of us in the room know such cases. All these doctors are liable to prosecution and some -  for ethical or legal reasons - refuse to take the risk.

And if they do help it must be done covertly. Which results in a terrible irony, the very situation anti-euthanasia campaigners seek to avoid. People despatched in secret - for who knows what motive? No supervision. No record. No regulation.

That is the current status quo. Patients have no right to insist on relief from their suffering. Doctors have every right to refuse. Its not only dangerous and murky, but also deeply unfair. Because, while the person in bed 2a may get that extra morphine, the person in bed 2b may not.

And what if the person in bed 2b is you?

Why should any of us be put at this risk?  No one is protected. Not the doctor and not the patient. That’s why we need laws, and open, transparent decisions. 

Myth 4. Powerful drugs and palliative care can eliminate pain and distress at the end of life.

Australia has one of the best palliative care systems in the world. We should be proud of it. Any serious proponent of assisted dying supports their work and agrees they should be better resourced. But all the resources in the world won’t address everybody’s suffering and Palliative Care Australia knows it.

In their own words they “cannot relieve all pain and suffering even with optimal care”. Their statistics, collected every year from 106 palliative care units around Australia, prove it. The Victorian Inquiry found the same.

This is not to criticize their work. The numbers of people truly beyond their help are small. But they exist. And their suffering, as recorded in this book, is savage. This is the reality of modern medicine. Yes, it can keep us alive longer. But it can’t always treat what comes with that.

It is also a statistical fact that those who might seek assisted dying aren’t all in hospital. Some are struggling to cope in nursing institutions and old-aged facilities. Others at home. In his evidence to the Victorian Inquiry, Coroner Olle stated clearly that many of those whose suicides he recorded, were people ‘unlikely to qualify for palliative care’

And, of course, there are others suffering with long-term, incurable illnesses, such as advanced MS and Motor Neurone Disease, whom no amount of palliative care will adequately help.

As to the argument made by some doctors that ‘powerful drugs at the end of life can treat all pain’: It’s a medical sleight of hand. True in most cases, but not in all. Here is Professor Richard Chye Head of Palliative Care at St Vincent’s Sacred Heart, Sydney:

I’m not going to say I'm going to control everybody's physical pain … because there will always be some patients who will have pain that is not controlled … but I also make sure that I tell patients ...  I am going to help you live with that pain’.

But pain is only part of the story. Because the relevant word here is not ‘pain’, but ‘suffering’.

I don’t want to force you to sit through a litany of symptoms that can create suffering but they include panic brought on by suffocation, delirium, nausea and mental anguish.

Sometimes they overlap. Often they are compounded by multiple side effects from multiple drugs. The option most usually taken when they can no longer be controlled is palliative sedation - being put into a coma.

For many patients and their families this is perfectly acceptable.

But not every patient wants to die in a coma while their family watches on. And it neatly sidesteps the reality that this option is a response to suffering has already happened. Suffering that may have lasted days, weeks, even months.

And if this was your mother, your sister, your father, would that be enough? Would you want them to be ‘helped to live’ with that suffering - or should they be offered the chance to escape it? What would you want for yourself?

Everyone I spoke to in palliative care, whether they believed in a law or not, acknowledged the existence of ‘bad deaths’. Patients who they ‘wish they could have done more’ for.

And in these hardest cases no one is spared. As one palliative care physician told me:  The dying are the witnesses to their family’s pain just as the family are witnesses to theirs.

~ - ~ - ~

The leadership of Palliative Care Australia opposes a law for assisted dying. This opposition is more than purely medical. Almost 60% of Australia’s palliative care services are provided by the Catholic Church. Their core ethos is to ‘neither prolong nor hasten death’.

Yet the conversation within palliative care is slowly changing, partly due to the research of Dr Sheahan. Her study of practices overseas show that in places where these laws exist palliative care services have actually strengthened.

Significantly, the Victorian Inquiry recommended strongly in favour of increased resources and funding for palliative care in conjunction with an assisted dying law.

It also highlighted the words of the ‘father of Australian palliative care’, Professor Ian Maddocks, who said:

Rather than fighting a rear-guard action, I suggest the proponents of palliative care join forces with advocates of assisted dying, and with mutual respect and dialogue ensure that laws are framed with a care and precision that allows no abuse and promotes best outcomes.

He’s right. The aims of palliative care – to alleviate suffering and make possible a ‘good death’, for the dying and their families – are also the aims of those who seek a more compassionate law.

It is important, in writing that law, that palliative care be brought to the table.

~ - ~ - ~

And then there’s disability communities, with their own unique concerns and divided opinions.  

Some strongly oppose assisted dying. This comes from their lived experience of being viewed as having lives of less value. I have no doubt this experience is genuine.

Others are strongly in support. They want the same choices available to them as for anyone else.

Both rightly demand to have adequate safeguards in place so that a person is never pressured into ending their life. They, too, must be heard when writing a law.

~ - ~ - ~

So what might that law look like?

Based on those that have been successfully written overseas, it would have three bedrock principles:

To access it, you must be a mentally competent adult. This excludes children or those with dementia or Alzheimer’s disease.

Your request must be voluntary.

You must suffer from a physical illness. This excludes purely psychiatric suffering.

At a minimum, you should be diagnosed with a terminal illness. This is defined in Oregon as “an incurable and irreversible disease which will, within reasonable medical judgment produce death within six months". Though some, like myself, would argue against a time limit because some conditions have a longer prognosis but are nonetheless intolerable.

For example: There is a strong case for a law that will also help those suffering from chronic, degenerative illnesses such as MND and MS. The suffering which can last months or years in these conditions may be, in some ways, greater than that of an illness such as cancer.  Almost half of the cases listed by Coroner Olle fall within this definition.

Before excluding them we have to ask ourselves ‘is that fair?’ If not, I would argue that the criteria for acceptance be an “irreversible and incurable physical condition which is unbearable to the sufferer”, a broader law closer to those in Europe and Canada.

The gates someone has to go through to qualify are the same in either case. They are many.

The first gate is you and your natural aversion to being dead. Only you can ask for assistance. And only if you are of sound mind.

The second is to convince two doctors, independent of each other - at least one of whom practices in your disease - that your symptoms are either terminal or irreversible, incurable, and unbearable.

As in the Netherlands, the first consultation should be without the family, so the doctor, usually your GP, can determine if this is, indeed, your considered wish.

The third gate is that a request for assistance to die must be put once in writing - independently witnessed - and twice orally.

The fourth: both doctors have to explore all treatment options with you, including palliative care.

The fifth gate is that should either doctor consider that any psychological disorder is impairing your judgement they will refer you to a psychiatrist, as happens in Canada, California, Oregon, Belgium and the Netherlands.

Once your primary doctor is satisfied you have met all the criteria, she will then write you a prescription for life-ending medicine, which you can drink.

Having received it, you have to complete a form attesting this is your decision and you fully understand its consequences. This to be included in your medical record.

All of which leads to the final gate: Again, you.

Only you can decide to drink the medicine. As Oregon shows, many choose not to. You can rescind your request for it at any time.

If your disease means you can no longer swallow, a doctor may legally inject you.

Your written requests and medical record, both doctors notes and, if required, the psychiatrists’, all go to the Coroners office and also a committee of review. In the Netherlands this consists of a doctor, lawyer, and ethicist. Both bodies have the power to call in doctors for questioning and to refer their conduct to police for prosecution.

That is what a law for assisted dying would look like. Not a license to bump off granny. A carefully written law you can access only if you have an extreme medical condition and which protects doctors from prosecution should they follow strict criteria.

I want to emphasise that what I'm proposing is a law to make legal a practice that’s already happening in Australia. But happening - as the Victorian Inquiry found - “without regulation, without support, without transparency or accountability, and from the evidence received, sometimes without consent."

~ - ~ - ~

In Australia right now, if you are dying and wish to end your suffering, by law you are allowed to commit suicide, with all the darkness and trauma that entails.

Also by law, you can opt for a slow exit, refusing treatment, including food and water, even if its life sustaining. This can take days, even weeks, and was described to me by a senior palliative physician as psychologically painful, both for the person going through it and their loved ones watching on.

How extraordinary is this, to live in a society where it is legally and ethically acceptable for a dying patient to endure a slow, tortuous death by dehydration and starvation – or to end their life violently and alone … yet it is legally and ethically unacceptable for that same dying patient to choose a quick and painless end to their suffering.

Yet this is the position that the Church and the AMA continue to lobby for. Not their constituencies, surveys suggest - only 29 pc of Australian doctors are actually members of the AMA; a majority of Catholics polled support assisted dying laws.

But their well-connected hierarchies are not for turning.

And those most affected by the power of these vested interests – the elderly, the sick, the grief-stricken, the traumatised – are, often, those least capable of pushing back. It’s an unfair fight.

So I have formed an organisation to fight for them. It’s called Go Gentle Australia. Our aim is to bring awareness to the suffering that is happening in our community and to galvanize that 70% of public support so that politicians can no longer ignore it.

We are being supported in this by people representing many groups –  doctors, nurses,  palliative care, cancer support, the disability community, the elderly, the legal fraternity, and politicians from all parties.

We don’t argue for a ‘right to die’. Death is not as a right. Death is a fact at the end of life.

We do argue for the right to have a choice about what happens to us at the end of our lives. Not to be coerced, when we are at our most vulnerable, into cruel and avoidable suffering.

Our first priority is to get a law properly debated – on the evidence - within every State parliament. Our second is to get a sensible and compassionate law passed. To stop this damage.

We have received financial backing from a number of organisations and some of Australia’s most respected business names. We’ll be saying more about them in due course, but I would like to mention one: Peter Joseph, Chairman of the Black Dog Institute and former Chair at St Vincent’s Hospital Sydney, who is here as our guest and has offered this statement:

"It's simple: a good life includes a good death. Just as we should live free from needless suffering, so we should die. In my opinion the suicide rate in this country would drop significantly if assisted dying was seen as part of assisted living ". 

We are also working closely with a key medical group that officially supports an assisted dying law. Significantly, the one that see the suffering of patients daily and up close: Australia’s nurses’ union, the ANMF.

But we are under no illusions about the behind-the-scenes power, and deep pockets, of those who oppose reform.

This book is the first part of our campaign. We have also created this print ad. It’s full page and we can’t afford to run it, so this might be the only time it’s seen. But we’d be delighted if someone would like to run it for us.

~ - ~ - ~

The Damage Done is not intended as a critique of Australia’s palliative care services or the dedicated doctors and nurses who give of their best. Rather it reveals what happens despite their efforts.

It is intended, however, as a rebuke to those politicians who have been derelict in their duty these past two decades, when 28 attempts have been made in different State parliaments to pass an assisted dying law. Not one has got to a stage where even the detail of such a law could be debated.

By failing to properly examine the claim that ‘no safeguard can be devised to protect the vulnerable ‘, our politicians have failed, instead, to protect the people they represent.

After all, who could be more vulnerable or in need of protection than the dying and their families?

There is every reason to believe the damage and despair found unacceptable by the Victorian Inquiry exists across Australia. And will likely increase as our population ages.

That harm, and the testimonies collected here, ask hard questions of us.

Simply opposing laws on moral or ethical grounds is not an answer to these questions. Denial and manipulation of evidence is not an answer. This is a serious public health issue.

That elderly Australians are killing themselves violently at the rate of more than one a week, because there is no other way they can be legally helped to end their suffering, is a national tragedy.

And for all those who do end their lives, how many others lie in nursing homes and hospitals, wishing they could be helped, mercifully, to do the same?

How many patients are dying without enough pain relief because doctors are terrified to give them more?

How many doctors, confronted by the suffering of their patients, are being forced to break the law, knowing they have no protection?

And how many Australians are suffering years of chronic, unrelenting pain … while their families are scarred with trauma and guilt because they can do nothing to help the ones they love when they most desperately need it?

In the words of Coroner Olle: There is a cry for help.  It may be muted, it may be veiled, but it is there nonetheless. And they all know it - including doctors.  They know that this person is screaming for help but no one is going to answer this call.  Not in this society.  

I believe that no compassionate society would knowingly support this.

We are a compassionate society. But we have not been aware of the scale of the damage.

That’s why I’ve come to light a fire.

A fire for all the people in this book and also for those whose stories we do not yet know. I invite them to come forward and make it bigger.

I invite those doctors and nurses who’ve seen this suffering, and know it to be wrong, to add to this fire and light it in their hospitals and their communities.

I invite all state coroners to build it higher by joining Coroner Olle in casting light on how our elderly are dying.

Let us make a fire so big no politician can ever again ignore it.

To those whose beliefs instruct you that only God can decide how a human being should die, I urge you, step aside. May your beliefs sustain you and those you love, but do not impose them on the rest of us.

To those doctors for whom ‘doing no harm’ means that you cannot, in conscience, participate, I urge you, too, to step aside.  Do not stand in the way of other doctors who, in equally good conscience, see leaving a patient to suffer when they are beyond meaningful medical help as doing more harm.

Step aside and let no one question your right to do so. The very core of these laws is that they are voluntary. For doctors and nurses as much as patients.

And to those doctors who are sitting on the fence because you think it’s all being taken care of, or because you don’t understand how these laws work, educate yourselves.

The safeguards written into these laws protect, not just your patients, but also you.

To the politicians of South Australia, who, for the 14th time, have a Bill before them – and to those of Victoria, Tasmania and NSW, who can expect new Bills within the year – I urge you: Do your duty.

Debate these laws properly. Understand what they are. Look at the evidence from overseas about how these safeguards work. And read this book.

Enough copies have been printed for every State and Federal politician in Australia.

Should you continue to stand in the way of a law for assisted dying, let it be in full knowledge of the suffering taking place in our community because of that refusal.

Write this law. And right this wrong.