National Site of Recognition for Thalidomide Survivors and their Families

Tania Rishniw:

Welcome ladies and gentlemen, survivors, families, friends. Welcome everyone to this very special day. My name is Tania Rishniw. I’m the former Deputy Secretary in the Department of Health and I’m going to be your MC today.

Over the past four years I’ve had the honour of overseeing the implementation of the Australian Thalidomide Survivors Program and working towards yesterday and today’s day of recognition and national apology. Yesterday we heard the apology from the Prime Minister which thalidomide survivors and their families and friends have been waiting a lifetime to hear. That apology recognised the thalidomide tragedy and its rippling impact on so many lives. Today I have the great honour of welcoming you all to the unveiling of the National Site of Recognition for thalidomide survivors and the families, a place of reflection and remembrance, a place to ensure we never forget. 

First and foremost we meet on Ngunnawal country and I would like to welcome Aunty Serena Williams to give us a welcome to this beautiful country which gratefully is a little dryer than it was yesterday. Thank you Serena.

Serena Williams:

Thank you Tania. I’d just like to mention on the weather yesterday I just believe it was a sign from the ancestors and from the heavens above of the crying, the tears falling, because I think it was recognising an apology was given and well overdue. So I think we’ve got a beautiful Prime Minister and I think he’s really for the people and I love that about him.

Before I go ahead I’m here to do a welcome to country and I’d like to thank Tania for inviting me here to do the welcome to country. It’s a respect of Ngunnawal protocols. Our protocols are over 65,000 years old and we have over 300 and something nations throughout Australia with over 500 and something dialects. So when you come onto country it’s about knowing people’s business on country. And I’d like to acknowledge that business and I’d like to acknowledge that today the National Site of Recognition for survivors and their families as well is to recognise and honour the pain and suffering experienced by the survivors as well as the impact on their loved ones, and is to serve an enduring reminder to all Australians that the lessons of the tragedy must never be forgotten.

Thank you again for having me here. And I say in my language and on behalf of myself and other Ngunnawal Elders and Ngunnawal family groups. I say:

(Speaking in traditional language)

Hello. Come. I will sweep the lands for you to leave your footprints. The water of the Marrambidya, the Molonglo, the Gudgenby and Ginninderry that will cleanse of you all harm. And Maliyan. Maliyan is a wedge tail eagle, the totem of the Ngunnawal people, and she will guide, protect and oversee you here on your journey. Welcome, welcome, welcome on behalf of all our families to this beautiful country. Thank you.

(Applause)

Tania Rishniw:

Thank you Aunty Serena. We promise we’ll walk gently on this land. Thank you for your beautiful welcome. I’d like to now welcome the Minister for Health and Aged Care the Honourable Mark Butler to make the keynote address today Thank you Minister.

(Applause)

The Honourable Mark Butler:

Well thank you. Thank you Tania and thank you Aunty Serena for a beautiful welcome to country. The idea of the skies crying yesterday during the apology and today, a still, quiet day for us to reflect and to commemorate this memorial is a beautiful way to start such an important day. Can I also acknowledge that we’re meeting on the lands of the Ngunnawal people and pay my respects to you Aunty Serena and to other Elders past, present and emerging.

It is an enormous honour to be with you all today, with survivors, with family, with friends. I’m here also with Parliamentary colleague Senator Reynolds representing the Opposition and Senator Steele-John representing the Greens party and symbolising the cross partisan nature of the work that has been underway under two Governments now for the last several years.

But that great honour is as the Prime Minister said yesterday because you have been survivors from the day you were born. But more than that you have been advocates, organisers, champions and warriors. Yesterday the Prime Minister acknowledged that fact as he delivered the national apology in the Australian Parliament along with the leader of the Opposition. And today we unveil a site that will acknowledge that fact forever more, a site that acknowledges a tragic period in our history, a time when expectant mothers were let down by a system that should have lifted them up, a system that assured them that this drug was perfectly safe when the truth was it was anything but. One dose was enough to cause devastating harm. One dose to spark a cascade of injury. One dose to cause a lifetime of regret, a lifetime of regret that might never be reasoned away, a lifetime of asking why, and asking that much harder question, what if. A decision taken in a moment that would ripple through a lifetime, through hundreds of lifetimes and thousands that never were.

As the Prime Minister said yesterday these parents did not fail their children. The system failed them both. And this National Site of Recognition is an acknowledgment of that and so much more. It will serve as a reminder and a permanent call for vigilance that as a people, as a Parliament and as a country we will never let such a tragedy occur again.

Yesterday as you all know marked 62 years exactly since thalidomide was withdrawn from sale here in Australia. Developed and produced in Germany between the late 1950s and early 1960s thalidomide was distributed across more than 40 countries and recommended to literally thousands of pregnant women. The drug was marketed around the world as something of a panacea, a safe and effective drug for treating insomnia, headaches, as well as nausea and morning sickness during pregnancy. But its effects on pregnancy had actually never been tested and as a country Australia had no way to confirm the drug maker’s claim of safety. All too late the truth became known. By the time it was removed from the market countless Australian mothers had taken thalidomide.

For too long we as a nation accepted the fiction that the thalidomide tragedy could not have been foreseen and could not have been averted. It was only because of the efforts of those here today and so many others besides that that longstanding fiction has finally been overturned. We now accept a hard truth too long denied that if the effects of thalidomide had been realised sooner the awful damage that it brought might have been prevented.

Today we have the Therapeutic Goods Administration, a national regulator of medicines and medical devices, to protect the Australian community. But 60 years ago we did not. Indeed at that time Australia had no meaningful or worthwhile way of evaluating the safety of medicines. The protection was not there exactly when it was needed. It was not there for the mothers, for the parents or for their children. And the ripples of that absence are what bring us here today.

As he delivered the national apology yesterday the Prime Minister also made a promise, a promise that your legacy and your example will never be forgotten. And with this National Site of Recognition we give form to that promise. We make it concrete through a lasting memorial here on the shores of Lake Burley Griffin in the nation’s capital. In view of the Parliament the National Site of Recognition will be exactly that. And as Health Minister I am truly humbled to be here to dedicate this site, to dedicate it on behalf of all of those who have fought so hard to bring it about, and all those who couldn’t be here to see it become reality, everyone who pushed for the Senate Inquiry, the committee members from across the Parliament, but most of all the survivors and their family members who gave their testimony and spoke their truth. 

Chief among them of course is Lisa McManus who you’ll hear from next. Over many years Lisa has been a constant and tireless advocate for survivors and for their families. It was Lisa’s lobbying that laid the groundwork for the Senate Inquiry in the first place. She then led negotiations with the former Government over the support package and earlier this year Lisa was quite rightly awarded a medal of the Order of Australia. She remains a source of reasoned and reasonable advice to the Government as we continue to work to support survivors.

(Applause)

The Senate Inquiry delivered its final report in March 2019 and the following year my predecessor Greg Hunt to his great credit overturned decades of neglect and delivered a much needed support package, one that acknowledged the physical and emotional pain and suffering that survivors have experienced, one that provides lifetime assistance above and beyond what is available through other programs of support. And yesterday the Prime Minister announced that we will re-open that program to new applicants to ensure that anyone who may have missed the previous opportunity to apply does not miss out on the support that they need and so richly deserve. And for all those who received the payment now and in the future the Government will also ensure that the payment isn’t locked in at a particular level but instead increases year on year through indexation.

That support will endure just as this site will, a National Site of Recognition that will provide in the words of Lisa McManus permanent recognition in a place of prominence, more than a plaque in a park. This is a place where we as an entire nation can focus our reflection. It will remind every member and Senator and public servant and passerby of the moral obligation that each of us holds as representatives, as decision makers and just generally as Australians. The National Site of Recognition has been designed in concert with survivors to do exactly those things. In April 2021 the Department of Health asked survivors, their families, carers and friends what their wishes were and from those consultations it was overwhelmingly clear that the site should achieve two things. It should recognise and honour the impact on thalidomide survivors as well as their loved ones and it should serve as an enduring reminder to all Australians that the lessons of this tragedy must never be forgotten.

In late 2021 the Department worked with a Steering Committee of survivors and a carer representative and with the National Capital Authority to select an appropriate location. They were looking for a place that struck a careful balance between being close to other attractions so that people would visit but also providing space for peaceful and private reflection. This location was identified and agreed to by the Canberra National Memorials Committee. And even on an overcast day like this it really is a beautiful spot. Close to the history of the National Carillon and within earshot of children playing at the Boundless park, easy to access, spacious and really peaceful.

Three design options for the memorial were considered with all survivors invited to have their say on the preferred design and the result that you can see out there is unique and it’s evocative. As visitors approach the memorial they’re met with this stunning glass brick gateway. And I’m no architect and I’m no art critic but I’m told that every single detail has been thoughtfully designed to be representative of the experience of survivors and their families. The void at the heart of the memorial represents loss while the gateway frames a view to the lake offering hope, offering fulfilment. The bricks represent strength and resilience but made from glass as they are they also reflect the need for transparency and the fragility of life. The ripple effect on the façade and through the glass echoes the effect that thalidomide had on the lives of survivors and their families. It’s really very beautiful but more importantly it has real meaning, will forever tell the story of this dark chapter. 

From the seating area visitors can see an information display with a short history of thalidomide in Australia. And as you enter the memorial later this morning you’ll notice that the last line is still vacant. That spot is where the national apology will be inscribed. And etched in the glass bricks of the gateway are words chosen by survivors including maybe some people who are here joining us today, words they felt were most relevant to their experience, words like determination, courage, strength, heartfelt words that speak to the resilience of survivors, a resilience that is endured for more than six decades. But there are other words too, words like suffering, injustice, heartache and anger, an anger most sincere and justified, a natural response when someone is confronted by another word that also features on the display, exclusion.

Through the national apology yesterday and the dedication of this monument today we seek to end that exclusion and offer in its place acknowledgment, recognition and respect. With this monument we give form to the promise that the Prime Minister gave in Parliament yesterday, that your legacy and your example will never, ever be forgotten. Thank you all so much.

(Applause)

Tania Rishniw:

Thank you Minister. Our next speaker as the Minister foreshadowed is Lisa McManus. And many of you will know her as the Director of the Thalidomide Group in Australia and a valued member of the National Site of Recognition Steering Committee. You’ll know her for her leadership and her tireless work to make today happen. I remember Lisa from the first time we met and where she made me promise that we would actually see this day happen and the apology happen. And I am thrilled to be able to deliver on that commitment.

(Applause)

Lisa McManus OAM:

Well we made it.

I don’t know if everyone here has not yet met – this is my husband Andrew and I’ve asked him to stand up with me here today because he’s just stood beside me every day so it was just natural that he should be here.

(Applause)

Andrew has fought every step of the way with me. He’s been my trusted, trusted, trusted mate. And for those of you that recognise the work that I’ve put into this campaign I can tell you now I couldn’t have done it without this fella. So we’re going to deliver this speech together side by side because it’s what we do.

(Applause)

I won’t be able to use the podium because it’s a little bit far away so I hope that I don’t make too much noise with the paperwork. So so many times I’ve been asked what does thalidomide mean to me and how has it affected me. In all its complexity the answer is quite simple. It’s affected me completely. Don’t touch me because I’ll start crying. I’ve got to be tough. It accompanies me wherever I go. There’s no escaping, no hiding and no pretending that it doesn’t exist. Thalidomide has robbed me, it’s robbed those I love, and it’s hurt me and hurt those I love as well.

Thalidomide came into my life before I was born and it’s been with me every day since. And like a weighted cloak I wear it and battle its constraints. It made it impossible to function without struggle and these days leaves me fearful, angry and in pain. On occasion it’s even broken my heart. It’s severely limited my life’s opportunities and it certainly is responsible for the path that I now walk. There is no doubt that thalidomide wreaked havoc on the lives that it touched. How could it not? Monsters usually leave trails of devastation and thalidomide was a horror amongst monsters. It maimed, it mutilated and it murdered. It destroyed marriages, families, lives and dreams, and it didn’t discriminate as it left absolute devastation and heartache in its wake.

For over 60 years thalidomide has been referred to as a monster. But the truth however, the title of monster doesn’t belong to that little white tablet. It belongs to those men that were in the background, the inventors, the manufacturers, the distributors, the politicians, all with blood on their hands.

Globally known as the biggest pharmaceutical disaster in history Australia certainly has its own black chapter to contribute to the tragic story of thalidomide. For us and our families our reality has existed beneath a constant cloud of struggle. Struggle. Let’s just have a think about that word for a moment. Struggle. The struggle to live in bodies maimed by thalidomide is unprecedented. We have fought against the odds of surviving infancy. We have battled for acceptance and normality. We have lived with disappointment and heartache but we’ve also strived for independence, dignity and worth. Today our bodies are failing at an alarming rate and our fears for tomorrow are terrifying. Struggle. The struggle of our parents and families as they were thrown into a downward spiral of disbelief, of shock, of grief, of shame, of guilt. And there was no support, no helplines, no public health officials focused on how to help this devastated community. Our parents were on their own.

Struggle. There’s that word again. The struggle against the greed of the manufacturer of thalidomide Chemie Grunenthal who still refuse to recognise and acknowledge our plight and their culpability. This is a company whose foundation is built upon the bodies of innocent babies. This is a company that is still welcome to sell their products here on our shores in Australia under licence and is even supported by the PBS with our Australian taxpayer dollars filling their multimillion dollar coffers.

Our Government has given more support to this company than it’s ever given to the survivors that they helped create.

You’re here for a reason.

Struggle. That word again. Struggle. The struggle against successive Australian Governments that have failed to acknowledge the damage caused by their predecessors and their stubborn refusal to concede the harm done to us and to our families. Governments worldwide have supported their survivors some for decades. All we’ve ever asked for and continue to ask for is parity. From the time the Australian Government was first notified about the dangers of thalidomide until today Australia has had no less than 17 Prime Ministers and 28 Health Ministers. All in their own ways have made claims about their commitment to equity, to justice, but none saw us.

It took the heart and the tenacity of the thalidomide voice to finally get their attention.

(Applause)

Struggle. The word again. Struggle. The struggle for recognition and redress when I as Thalidomide Group Australia took on the battle to gain acknowledgment and support from our Government. This has been an arduous and relentless battle, one that should never have needed to happen and one that I never imagined would be left to someone like me. It has come at a huge personal cost both personally, emotionally and definitely financially to myself and my family.

And ironically at the beginning of this campaign I was told by the Health Departmental staff that we would never receive an apology from the Australian Government. An apology implied fault and the Government didn’t believe that there was any fault of their own to be had. They were wrong and we proved them wrong and today we stand.

(Applause)

The next word struggle. The struggle continues today with our current Government as we try to refine our thalidomide program. There are significant wrinkles to be ironed out. Although designed under the previous Government Minister Butler you have been made aware of the shortfalls and not only can you make this a program that the ALP can be so proud of but also one of significance to those it was designed to support.

Late as it is and survivors – sorry. Little bit nervous still. Late as it is survivors and families are grateful to finally witness both the national apology and the unveiling of the memorial. This not only acknowledges the tragedy of thalidomide but it validates our lived experience. Regrettably in the time that it’s taken to get to this day too many of our loved ones deserving to hear these words have died. My parents, our parents, our partners, family members, even our survivors have gone.

I ask the decision makers here today to look around and to see the faces of thalidomide, to really see the faces. And I ask the faces of thalidomide to look around at each other and to recognise the 60 plus years that it’s taken to get to this moment, that we have survived. We have survived.

(Applause)

We are the sum of our own triumphs and our tribulations. Our story should be forever etched in the pages of history and cemented in the annals of time. Ours has been a unique journey filled with heart, hardship and grit. Australia should know today that we are a group that have lived this most horrific trauma and we have endured and we have played our part in building a better Australia. This Site of Recognition provides the platform to acknowledge those that have been impacted by the drug thalidomide. It serves to recognise those that have lived with profound and lifelong injuries. It serves to honour those who went unrecognised or who have died prematurely. And it serves to respect those, our parents, our families and our friends that have walked beside us. We should never be forgotten. Thank you.

(Applause)

Tania Rishniw:

Thank you Lisa. Such a speech I think that’s been in the coming for such a long time. Congratulations. Our next speaker is Mr Peter Gordon. Thank you Senator Steele-John.

(Applause)

Sorry. I couldn’t let you sneak out like that.

Peter Gordon the senior partner for Gordon Legal and all of you have either known Peter for a long time or benefited from his work of the redress of the tragedy. I welcome you. You’ve been working on this issue for such a long time. Please come and give us your reflections.

(Applause)

Peter Gordon:

Thanks Tania. Whoever invented the phrase hard act to follow probably had Lisa McManus in mind. So thanks for that. What a great speech. Well done. Can I also take the opportunity to acknowledge the traditional owners of the land that we meet on today and pay my respects to their Elders. And could I also take the opportunity to pay my respects to the Elders of the thalidomide community, those who are here today and those who as Lisa has said are no longer with us.

Robert Jackson at the end of the Nuremberg war trials in December 1946 in Germany in Nuremberg said this about the 20th century. He said it’s common to think of our own time as standing at the apex of civilisation from which the deficiencies of previous ages may patronisingly be viewed in light of what is assumed to be progress. The reality is that in the long perspective of history the present century will not hold such an admirable position. Just ten years later in that 20th century and in that same country Grunenthal unleashed thalidomide on the world. 

We should look back at that. We should look back at the years that followed in the last 65 years and our treatment of Australia’s thalidomide community with shame and with regret as the Prime Minister and the Opposition leader so eloquently put it yesterday but also with admiration. Shame and regret at their mistreatment, isolation and exclusion. But not just by Government and not just by pharmaceutical companies. Because we all in our different fields have to take ownership of this. Sure there was the pharmaceutical companies, the barbarism and the arrogance of Grunenthal, and neglect by Governments particularly after the disaster was known, but also by lawyers and also by the legal system and also by doctors. And crucially as Anthony Albanese said yesterday by exclusion and isolation in our own neighbourhoods, schools and workplaces. All of that happened. But admiration for the sheer heroism of their survival, of your survival, your perseverance and your achievements so often outstanding. As one of you said to me just earlier this week ‘When I knew that I had it, when I first understood about it, I chose to live, not merely to exist’.

I’ve had the privilege once Ken Youdale roped me into this in 2009 to meet so many of you. He dragged me up to Sydney to the Blue Hotel where he was negotiating with Diageo, and I first met people like Brett Neilson and Lance Fletcher and Trish Jackson and Mary Henley-Collopy and got to know them for the first time and the agitation they were struggling with at that time. And I also met people whose mums clearly took thalidomide but who’d been excluded. People like Lynette Rowe. And got to know so many of you who are with us today during the class action of 2010 to 2014. And I’ve had the privilege as you know over the last couple of years of working for both the previous Government and this Government to identify more than 20 new survivors. So all those longwinded determinations you got in your favour in the last couple of years that have driven the Australian Government crazy when I sent them, because they’re way too long, I wrote those and I feel like though I haven’t met you all I know your stories and I pay tribute to your struggle.

Some of Australia’s thalidomide community were in Australia’s biggest cities but many were in outer suburbs, regional and rural communities and the outback. And so as Lisa has said wherever you were so many of you faced the physical, mental and social horrors brought by thalidomide almost totally alone. And again this was so well expressed yesterday by the Prime Minister and the Opposition leader. Yesterday I must say was an overwhelming day for me as I’m sure it was for many of you. And to see so many friends and former clients whose stories I’ve had the privilege to come to know was itself just as today is, just as this moment is for me, a privilege I will never forget.

No country’s thalidomide survivors had it easy but Australia had it worse than many. Most country’s thalidomide communities were ignored by politicians, brutalised by an arrogant and uncaring legal system, and insulted by medical science which instantaneously in 1961-62 claimed expertise over an embryopathy syndrome that the world had never seen before and knew literally nothing about. And in so many countries the more obviously thalidomide like survivors, those with phocomelia malformations, were pitted by the companies against the less obvious and the company-imposed limits on funds were cynically used to divide survivor groups against each other. In England when the Distillers company arbitrarily divided thalidomide claimants into what it grotesquely called the X listers and the Y listers, the ones that Distillers accepted and the ones that they didn’t, at least both of those groups, the ins and the outs, could readily keep in touch, meet, protest and eventually force a House of Lords Inquiry. Those accepted by Distillers were grossly undercompensated here and in the UK and under supported as Lisa has said. While those arbitrarily excluded were left with no support at all but at least they had each other.

In Australia those accepted by Distillers and especially those who weren’t were on their own. And that’s why it’s such an outstanding thing and such an emotional moment that the Government and the Health Department organised the last two days in the way that they did. I’m so thrilled and emotional that you all got the opportunity to meet with each other yesterday. It’s an amazing thing to think that that’s the first time in 63 years that that’s happened. It’s extraordinary.

(Applause)

It wasn’t just the medical mistakes that went on. Information about thalidomide’s terrible effects were eked out to doctors by the company with nothing like the enthusiasm with which that same company was spruiking this drug to pregnant women only weeks earlier. The result was that a lot of Australia’s thalidomide population – and I hope you won’t mind me calling you out as an example of this Lisa – were born to mothers who took the drug after Distillers did what it said was a recall but in fact was never a recall at all. To compound that most families in Australia’s thalidomide community had to put up with isolation, economic hardship and successive Governments which prioritised the corporate brand protection of Distillers to support for the survivors. The medical research was also ignored by the Government and the legal fight was a David and Goliath battle that unfortunately ended differently to the real David and Goliath battle at the first instance and Australian thalidomide survivors were grossly under compensated. And those who didn’t fit the criteria were led to believe that you were the only odd one out, especially if you lived in a regional country town by yourself. As one of my other thalidomide friends said to me back in 2009 when she was told she was excluded for crazy reasons, ‘I felt like I was the only broken biscuit’.

I have so many friends, clients, former clients and people that I know and whose stories I admire that it’s hard to highlight a few people. And I apologise that I can’t acknowledge more people anymore but I do want to acknowledge a few people. Lynette Rowe is one of the children of thalidomide. At the tender age of 48 and having lived her life with no arms and no legs she nevertheless took the biggest thalidomide manufacturers in the world, Grunenthal and the Distillers company, Distillers Group to court in an historic class action. Grunenthal turned up in that action in 2012 in the Victorian Supreme Court and said with a straight face to the judge that if the armless and legless Lynette had the temerity to try and sue it she should emigrate to Germany to do it.

Lynette faced down Grunenthal and Distillers. Her win tripled the number of Australians who the companies and the courts accepted were genuine thalidomide survivors. Just as the financial recompense was overdue and helpful this group of over 100 new thalidomide survivors finally had in 2014 after 55 years of isolation and alienation an explanation, a meaning to the struggle they’d fought their entire lives. The nonsense excuses that they’d been given by different people, that you were born too early or born too late, or you had the wrong bones missing, or that your mum’s medical records were missing or inadequate. Lynette Rowe’s courage fixed all that. Because of Lynette and the scientists and the specialists prepared to stand with her to redress those defects in the medicine and the legal proofs of evidence, Australia today stands as the country which in the world has best addressed the medical and scientific fiasco which has seen less than half thalidomide’s true victims recognised, and the corporate three card trick which for 50 years had people believing that 99% of thalidomide magically disappeared from people’s kitchens and medicine cabinets on the 29th of November 1961 just because Distillers wrote a letter to a few GPs.

Australia now recognises three times as many survivors as the pharmaceutical companies were prepared to concede in the 60s and 70s. And that work of recognition has been properly completed because of the Australian Government redress scheme put forward under the Morrison Government and continued under the Albanese Government in the last three years in which some 25 new survivors have come forward, been identified and established their status. Congratulations to both Governments on that achievement.

(Applause)

Lisa McManus. What more can I say that hasn’t already been said. But she is the woman whose ceaseless and heroic efforts have brought about that program and also the events which see us gather in Canberra today. She took over in my own view the mantle of the late Ken Youdale, the man I’ll say a bit more about in a moment. And over the course of the last ten years of fighting she’s brought about these outcomes, outcomes for Australia’s thalidomide community including this current scheme. She and her husband Andrew worked tirelessly with the Senate Inquiry and since then in addition to her work and the work that she’s described herself I’m sure many of you would acknowledge that she’s become a councillor, a friend and a support for all of you and your families and a rallying point for so many in the Australian thalidomide community. We’re blessed to have her.

Before Lynette and Lisa there was a young Laura Thompson who was only six years old when in 1967 by the side of her father, with her father Arthur, the first leader of Australia’s thalidomide community, she first took the giant British corporation Distillers to the New South Wales Supreme Court at the age of six. She won that case. Then they took her on appeal and she’d nearly reached the age of ten when Distillers dragged its malicious legal fight against her to the Privy Council of the House of Lords in London where Laura also won, striking an enduring blow for all Australian thalidomiders. Her name and her legal triumphs are forever enshrined in legal precedents in the law books of both countries that every Australian law student gets to read today.

All children of course have parents and most have brothers and sisters. I know some of your stories better than others. The heroism of Wendy Rowe who you’ll hear from shortly and the late Ian who I wish could be here today. Arthur Thompson, Laura’s father is a man that I never met but obviously an incredible man. Not a lawyer but not at all afraid of lawyers or courts or giant corporations. Laura remembers him above all as a humble man. And the late Ken Youdale. But let’s not forget whilst calling those people out that every family has its heroes and its struggles. I know also of the heartbreak and the shame and the blame and the struggles of brothers and sisters who had to find ways to understand why most of mum and dad’s attention was directed elsewhere. We acknowledge all of that today and how it made your own lives harder.

I want to also recognise that there are some thalidomide survivors, probably some who are here today, but I also know some who chose not to come to Canberra, for whom the pain, the past treatment, the ostracism and the system proved to be just one too many poisoned pills, one that was just too big of a swallow. And can I say that the anger that you still feel is justified. What was done to you can never be undone. But it’s never too late to say sorry and to acknowledge wrongs done and suffered. I want to acknowledge the goodwill, compassion and leadership of Australia’s Government, Health Minister Mark Butler and the care and dignity of this scheme. And I think there’s a lot of people in the room who’d want me to acknowledge and want to be acknowledged the care and sensitivity of the officers in your Department led in particular by Tracey Andrews and Kate Piper and the effort that they’ve put into the quality of the last few days. It’s been fantastic.

(Applause)

I also want to recognise the role played by Minister Butler’s predecessor Greg Hunt, the first as Lisa has said in a line of 26 Australian Health Ministers since 1961 to actually take action to address some of the wrongs of the past.

Before I go I want to acknowledge the role and the legacy of our late friend Ken Youdale. I met Ken in September 2009 and he dragged me into this world of thalidomide and I’m so glad he did. He was then himself the tender age of 86 years old and he’d just returned from London where he had sat outside the office of the Chairman of Diageo all day every day for three weeks until the Chairman relented and agreed to let him make his case for better redress for Australia’s thalidomide community. It had then been eight years since Ken and his wife Janet lost their daughter Nikki to internal thalidomide injuries. Ken pressed his case relentlessly over the next 12 months out of his love and care for you, for the many people in the Australian thalidomide community who’d come to love and depend on him. He applied every bit of the same ingenuity and determination which had seen him 65 years earlier do two tours of duty in the RAF Pathfinder Squadron in World War II fighting Nazism and to later rise to the head of a major Australian company. He did that to fight for better rights for thalidomide families that the Youdales had come to know.

In 2015 my wife Kerry and I were privileged to be Ken’s guests at the home of the French Ambassador to see Ken invested with the Legion d’Honneur, the highest honour that country bestows. It was in honour of Ken’s 35 sorties over occupied France in World War II all under heavy German anti-aircraft fire. Just for context a tour of duty was 18 sorties and in the Pathfinder Squadron the attrition rate, the death rate, was 50% per tour of duty. Ken did two tours of duty. One was never enough for Ken, something I’m sure the Diageo Chairman came to appreciate over every one of those three weeks that Ken sat outside his waiting room in London.

It's sometimes been said that World War II was Australia’s greatest generation. As a member of it if Ken were here today I’m sure he would point with pride to you, to this generation, to the people who are here today who have endured and achieved. In late 2010 led by Ken we signed an agreement for a further $50 million for the then 46 thalidomide families recognised in Australia. No commemoration ceremony can be complete without acknowledgment of those heroes of the past, of Arthur Thompson, of Ian Rowe, of Ken Youdale, of all of the mums and dads who stuck up for their kids when no else was prepared to do it.

I’d like to thank you for the opportunity to speak today. I’m so glad that you’re all here. I wish you all the best.

(Applause)

Tania Rishniw:

Thanks. Thanks Peter. And can I also acknowledge Ken’s daughter Manon is here with us today somewhere in the audience. Thank you. Thanks Manon.

(Applause)

I now have the privilege of inviting Wendy Rowe up to speak. Wendy is Lynette’s mother and you’ve just heard the amazing story of Lynette. Thank you Wendy for sharing your story.

Wendy Rowe:

After all those other speeches mine will take about a minute.

61 years ago my life changed. Lynette was born in March ’62 with no arms and legs. We brought her home with no referrals or advice and I was told I’d probably had a virus that caused it. Take her home and she’ll probably die within six months. But here we are today with a very vibrant woman who is comfortable in her own skin. We’re so proud of her. We’ve had very little help for most of her life but since our legal case we were finally given some satisfaction. It only took 50 years before she was diagnosed as being a thalidomider. Things have been much better since then. We are very grateful that the Government has recognised this amazing group of people who have suffered for 60 odd years. I would also like to thank Lisa McManus and Peter Gordon for their persistence to get this result. Let’s hope and pray that this situation will never happen again. Thank you.

(Applause)

Tania Rishniw:

Thanks. Thanks Wendy. Our final speaker today is Timothy – can I call you Tim? See I’ve been calling you Tim all along – Tim Loughry who has been such a valued member of the Site of Recognition Steering Committee and I invite you to tell your story Tim.

(Applause)

Timothy Loughry:

Gee this mob can party. That was great last night.

That was great.

Excuse me. Sorry.

Adelaide. Summer 1961. It was a scorcher that broke records. Fair to say I was conceived that summer. I was number six in a family of eight. The two younger ones are here today, Matthew and Patrick. How are you boys? You all right?

While mum was pregnant with me she had five other rugrats at her feet all under seven years of age. I wore her out. A doctor was needed. When dad came home from work he drove mum to the doctor’s in our beautiful Plymouth. The doctor prescribed a tablet Distaval. Being suspicious of pharmaceuticals mum took one out of the box, cut it in half and took it. That half a tablet knocked her round to the point where she couldn’t keep up with her other kids and she just ended up throwing them down the toilet.

I was born on the 17th of October 1961. I was born with a shortened left arm, a little hand and half a chest. That was half a tablet. Excuse my self-indulgence. I’m going to read an open letter to my mother Dorothy Maud Loughry.

Dear mum. I know I drive you up the wall with stuff I remember in my childhood. Well here I go again. As a little boy in a family of eight I was always the first one out of the cot. Sometimes I’d catch dad before he went to work. Other times it was the hum of our Plymouth that woke me. In the kitchen I would sit on the lino floor in front of a two bar radiator and watch you prepare eight lunches, darn socks and polish shoes. I remember telling you that was the warmest I ever felt. Do you remember how we would always sit together in church and play with each other’s hands? You’d grab my little thumb, you’d pull on my pinky, you’d clench my little hand into a fist and then you’d demand I do the same to you. We’d both giggle our heads off. And this was in church.

Do you remember the day dad taught me how to tie my shoes? I think about it all the time. It was a Saturday and dad had just got home from work. He had a job to do on our front veranda. I sat on the step and with one untied shoe. The radio was on in the background and the Goon Show was on. We both fiddled and fumbled with our jobs while laughing our heads off. That day I learnt a greater skill. To live, laugh and love, a creed I hold to this day. 

Hey mum do you remember I got a little bit self-conscious about my arm? You took me on a bus to see a thalidomide specialist, a doctor Henry Rishbeth. While sitting in the waiting room there was a little girl tearing around in a trolley with a big grin on her head. She had no legs. I still see her grin to this day and I hope she’s still tearing round and maybe she’s in this room. I remember the doctor saying to us ‘Yeah. I can cut this and I can split that, lengthen this and straighten that. However it won’t operate as a normal hand’. His advice was for us just to play on and get on with it. It was bloody good advice we thought. I can catch tennis balls and I can mark footballs.

Mum when I left the nest I had to find my own love and I found it in spades. Woodville Gardens, YCW, Charlie Marlow, my very first boss Kevin Lewis who taught me the great art of preparing cricket pitches, the West Torrens Cricket Club and the mighty, mighty St Kilda Cricket Club of which I’m a life member. The badge I’m wearing today is my wedding ring. Mum you’ve always worried about what I’m up to. Well I’m standing in Canberra at a National Site of Recognition reading this letter to you. You are very much a part of it. Mum your foresight, your caution, your care and love drives me every day. Dad, Brian Alfonsis Loughry, your spirit full of humanity, social justice and humour shares the same driving. Keep loving, keep living, keep laughing. Thank you.

(Applause)

Tania Rishniw:

What a great note to finish today’s official proceedings. Thanks Tim. That does conclude the official speeches. We will have refreshments under the marquees and in here. Looks like the heavens have opened up a little bit again but can I now invite Minister Butler and Lisa McManus to stand under the umbrellas and actually cut the ribbon marking the official opening of the Site of Recognition.

(Applause)

Timestamp: 56:28 [Video footage of the Minister for Health and Aged Care, the Hon Mark Butler MP, and Lisa McManus OAM, standing next to each other in front of the Site of Recognition. They are standing underneath a white umbrella that Minister Butler is holding. There is a long blue ribbon in front of them, held up by bollards that are decorated with a blue and gold bow. Minister Butler cuts the ribbon with scissors. He then puts his arm around Lisa McManus’ shoulders.]   

[End of Transcript]