By April 2012 I was finally ready to ask Woody Woodhouse to swear an affidavit as to what he knew about thalidomide in Australia. I had spoken with him many times, asked him hundreds of questions. I had also to come to like him a lot. Woody was quick and clever and interested, and I enjoyed visiting him and Ursula at their home. I also suspected there was more he could tell me. I had never believed Poole’s story that Hodgetts and Strobl had kept their dark secret to themselves. Hodgetts had written an extensive report about his meeting with McBride. Why would he keep that secret? It was a farcical notion.
Woodhouse, though junior at the time, had worked at head office, worked closely with Poole, and worked with the salesmen. I thought it likely that Woodhouse would know something about McBride’s first report and why it was not acted on. But I knew that talking about this would be hard for him. After more than a year of working with thalidomiders and their families I was very aware how painful the subject was for many people. Still, it was getting late in the piece. Lyn’s trial was only six months away. I wanted a sworn statement from Woodhouse and could not wait much longer.
So in early April, I flew up to Sydney to see Woodhouse again. Was there any further information he might volunteer? I showed him a statement I had drafted for him, which covered his university days, Ursula’s period as a film star, living in London, moving back to Australia to work for Distillers, the drug disaster and his reflections on the whole sorry thalidomide saga. Woodhouse read it carefully. Then he suggested we go for a drive and look around his neighbourhood. ‘We can talk about this again when we get back.’ I was happy to do that. Woodhouse was good company, and he lived in a beautiful corner of Sydney. On the drive he pointed out former prime minister Bob Hawke’s spectacular harbourside home and the playing fields where his own sons had played football as children. Then we drove to the bottom of the hill, parked and walked down the steep path to the sea baths.
It was a stunning Sydney autumn day, sunny and bright. The baths sparkled and a couple of tough elderly locals churned up and down in the chilly water. Hundreds of tiny fish flitted in the shallows. I remarked how lucky Woodhouse’s children were to have grown up here. After lingering on the boardwalk beside the sea baths, we walked back up the hill to Woody’s car.
I told Woodhouse I’d love to see the Distillers building in Artarmon where he had worked in 1961. Would he be able to find it? No problem, Woodhouse replied. It was a short drive, and true to his word, Woodhouse immediately identified the building. It was now a car rental premises, painted a garish green. Woodhouse and I walked across to the building. Pointing up at the second level, Woodhouse said: ‘That’s where my office was, over there. Poole was over in that far corner and Skinner [the accountant] and Strobl were in the middle. Often the four of us would stay after work for a drink. Around the back was the warehouse. We had a lot of thalidomide in there.’
Standing outside the building with Woody felt like peering into the past. It helped me understand what went on: not just who did what to whom, but the colour and movement; the extra, ostensibly irrelevant, detail. Woodhouse had been in his early thirties when he worked in the building, with a young family and a long career ahead of him. Now he was in his eighties, comfortably retired, and helping a lawyer who he knew was going after the company he had worked for. I was grateful to him. We talked for a while and then, after I took a few photographs, we drove back to his home. At the small dining table where he and I usually talked, Woodhouse got right down to business. ‘This affidavit is pretty right so far as it goes,’ he said, gesturing at the stapled pages in front of him. ‘But it’s not everything.’
OK, I thought, I knew that.
‘We have to talk some more about McBride’s warning in the middle of 1961,’ Woodhouse continued. ‘I know that’s what you’re really interested in. What I have to tell you is this: I knew what McBride had told the company. So did a lot of other people.’
I held my breath. What Woodhouse was volunteering was dynamite. I desperately wanted it for the court case, for Lyn, for Wendy. And after more than a year of digging into thalidomide history, I badly wanted to hear confirmation of what I suspected.
Woodhouse was not going to disappoint. ‘I don’t know how Bill Poole found out about McBride’s concerns but he definitely knew about them. Bill Poole and Ron Skinner [the accountant] were both aware around the middle of 1961 of what McBride believed.’
There it was. Confirmation that Bill Poole had been lying and the authorised Distillers version of history was a fiction. But Woodhouse, who later swore an affidavit detailing the information he provided that day, continued. He painted a picture of mid-1961 at Distillers’ Sydney office that was ever more compelling. ‘There were only a few employees at [head office],’ Woodhouse said.
Often in the evenings after work Poole and Skinner—and sometimes Strobl—and I had a whisky and a chat together. These chats could go on for some time and sometimes I arrived home quite late.
At that time, about June or July 1961 and afterwards, Poole and Skinner—and Strobl when he was there—often talked about McBride’s concerns that thalidomide was causing the deaths of babies and the implications for the business and our sales if McBride’s suspicions about that were correct. The conversations were sometimes lengthy and Poole and Skinner especially expressed great concern at the possibility McBride was right. Both Poole and Skinner believed, and stated, that the future of the business hinged on whether McBride was right or wrong.
At the time these conversations were going on I assumed that Poole had referred McBride’s report to [Distillers] in London and that it was being investigated. While it was just one doctor and the report was not confirmed by anyone else, it was a very serious matter with major ramifications. It was a matter that should obviously have been immediately reported to London. We were not equipped to assess or investigate McBride’s report [in Australia]. We had no medical or other technically qualified staff. On the other hand [the London head office] had a well-staffed medical division plus pharmacologists and others.
Woodhouse, it must be stressed, was a junior employee in 1961. Poole, Skinner and Strobl were older and far more senior. Poole ran the drug business in Australia and reported to (and frequently met with) Ernie Gross, the Distillers board member with responsibility for all of the Australian operations, including alcohol and pharmaceuticals.
Poole had clearly understood the gravity of McBride’s report. There was no doubt about that. He insisted that Woodhouse speak to nobody about it. ‘Poole told me I was not to discuss McBride’s report with other staff or anyone else. The only reason that I unofficially knew about McBride’s report was because Poole, Skinner and Strobl discussed it frequently and openly during our after work drinks.’
So Distillers’ three key men in the Australian drug arm—Poole the boss, Skinner the money man, and Strobl the national sales manager—knew that a Sydney doctor they had asked to trial their beloved drug now thought that it might be malforming and killing babies. The three senior men sat around drinking and talking about how, if McBride were right, it would devastate their business. ‘During this time I thought we were waiting for London to conclude some investigations or give us instructions,’ Woodhouse said. ‘Poole and Skinner discussed McBride’s concerns in front of me from time to time during this whole period.’
Remarkably, as these drinking sessions continued through the second half of 1961, Poole and Strobl kept telling their salespeople to promote thalidomide as safe and effective, including to obstetricians. And, incredibly, they were still fighting to get a government subsidy for the drug, which if granted would have seen sales rocket, and a far worse thalidomide disaster in Australia. In anticipation of the government subsidy, and the sales surge sure to follow, Poole had built up a huge cache of thalidomide drugs. Government records show just how big the stockpile was. In the aftermath of the disaster, when sales had been suspended, there were more than eight million pills plus 30,778 bottles of liquid thalidomide in Distillers’ warehouse. Poole had been planning to flood the market with a drug he knew might be a baby killer.
The government’s final refusal to admit Distaval to the free list came in October 1961. By this time, Poole had known of McBride’s report for three or four months and not a word had been mentioned to the government.
In late October or November 1961, McBride complained again, and Woodhouse was sent to see him. Woodhouse is quite clear that McBride’s November 1961 complaint was not his first. ‘I was aware that McBride had first voiced his suspicions to [us] some months earlier.’
Woodhouse’s revelations were critically important: a major advance of Lyn Rowe’s claim. We could now prove, with sworn evidence, that Distillers’ Australian arm had received a clear warning from McBride in June 1961. This warning, which might have saved Lyn Rowe and thousands of others, had not got lost with two foolish salesmen. The warning had in fact ended up with the senior men running the business: Bill Poole, the managing director, and Ron Skinner, the accountant. Poole had a direct line to his bosses in London and to Ernie Gross, the Distillers board member in Australia. We could now mount a variety of legal arguments that the UK parent company was liable for Bill Poole’s disgraceful behaviour.
When Phil Lacaze, who was in Melbourne, received the shocking news from Sydney headquarters about thalidomide’s withdrawal, his sales team was dispersed around Victoria, visiting country towns. Lacaze sent word that they were to return to Melbourne immediately and they met at his home the next day. ‘I told them that Distaval was suspected of causing birth deformities [and] would no longer be available for sale and we were not to promote it.’ Lacaze described the news as ‘a bomb’, which ultimately shattered the company. ‘I knew the implications were terrible.’
Throughout 1962, Lacaze continued to visit specialists on behalf of Distillers. Several obstetricians told him they had delivered malformed babies who died before or shortly after birth. The doctors now knew that these births were the result of Distaval. ‘They said that these babies were often not shown to their mothers, who were told only that the babies had died.’ Lacaze quickly realised there was ‘a greater number of thalidomide deaths than was publicly known’. Disillusioned with Distillers, Lacaze quit the company in October 1962. Very helpfully for us, Lacaze had kept some material, including a letter Bill Poole wrote to him in December 1961, immediately after the sale of thalidomide had been suspended.
At the time Poole was in full damage control, which meant lying constantly. Poole crafted his letter to make Lacaze feel he was being admitted into the inner sanctum of thalidomide knowledge. ‘I think I had better put you fully into the picture in so far as I know it myself and the facts are as follows,’ Poole began. He dishonestly claimed that McBride had told only Hodgetts about his thalidomide suspicions in mid-1961, and that Poole himself did not find out until October or November 1961. ‘You may imagine the concern with which I later received this news,’ wrote Poole. ‘Certainly I think we have done the humane and proper thing in discontinuing sale of the product and a long road now stretches before us…to see if there is any foundation for the theory.’
Poole then set out Lacaze’s orders: as little information as possible was to reach the public about the disaster. ‘We must take every precaution to see that no news of this information leaks out to the public generally or to the national press or to the weekly magazine press.’ Poole was paranoid about publicity—publicity which would have helpfully alerted pregnant women not to take the drug that may have been lurking in their medicine cupboards.
Even the sales reps who reported to Lacaze were to be kept in the dark. ‘It would be as well not to give very much information to the other representatives. I am sure they are all very sound people at heart but I can see no useful purpose being served by telling them too much at this stage and, knowing human nature, some of them will be sure to pass too much information on to other people.’ Poole also told Lacaze not to mention that the ‘weight of evidence’ against the drug came from Australia: instead he was to refer to ‘circumstantial evidence’ received in London.
Poole’s next mission was to sell his lie to the Australian Government. On 28 February 1962 he wrote to the director-general of health complaining of ‘sensational and rather distorted reports’ in some newspapers. Poole wanted to correct the record by providing the ‘full story’. First Poole offered a self-serving account of how safe the drug had proved during clinical trials in Germany: ‘completely non-toxic’. Then he got down to his central purpose. ‘On the subject of the malformed babies, we received a telephone call from the Sydney consultant Dr W. G. McBride, sometime in October [1961] and as a result of that we paid several personal visits to him.’ McBride’s information had been ‘extremely worrying and I lost no time in sending it to England for evaluation and instructions’. No mention of Poole’s personal knowledge from June 1961, or his drinking sessions where he worried that McBride’s report would destroy his business, or his insistence that staff keep McBride’s warning secret.
The fictional history Poole provided to the government concluded with a flourish: ‘I think this puts you in full possession of the true story. I am sorry to have written at such length but I feel that you will at least now be in a position to inform the Minister, or anybody else, of what actually happened.’ Soon afterwards, Poole received a note from a senior government bureaucrat assuring him that his letter would be a ‘most valuable aide memoire on the subject’. Mission accomplished for Poole. His letter deceived the Australian Government, which thereafter showed no inclination to investigate the disaster.
In July that year Poole was still lying—but now to the media. The Sunday Truth of 29 July 1962, under the headline ‘Sydney Doctor Stopped Horror’, carried Poole’s insistence that he had acted promptly on receiving McBride’s warning. ‘Mr Pool [sic] said the doctor’s report shocked him so much he sent it to England and the drug was withdrawn from sale two days later.’
Poole never gave up on this fairytale. In the 1970s Poole swore an affidavit in the UK litigation between the Sunday Times and Distillers over the thalidomide story. Poole denied ever knowing about McBride’s concerns until October 1961, denied that thalidomide had been withdrawn at the Crown Street Hospital in June 1961, and accused Hodgetts and Strobl of keeping McBride’s devastating report to themselves. Lying on oath held no fears for Bill Poole. Distillers adopted Poole’s fiction, advising inquirers that Poole knew nothing about McBride’s suspicions until October 1961 at the earliest. If Distillers did not know this was fantasy, it should have. A few questions of any number of its own staff in Australia would have elicited the truth. As an exercise Lyn’s legal team tallied the number of people in Distillers’ Australian office who knew in mid-1961 that McBride believed their number-one drug was maiming and killing babies. We counted eight staff, and there were in all likelihood more.
Some people have always known Bill Poole was a liar. Barbara-Ann Bishop (later Hewson) was born in July 1961 with severely malformed hands and arms. Her father, John Bishop, was another Distillers salesman who had studied medicine before becoming a pharmaceutical salesman. A spitfire pilot during World War II, he had joined Distillers in June 1960. He later developed a great deal of resentment towards his former employer and was writing a book that covered his thalidomide experience at the time of his death in 1978. During our investigations we were disappointed to discover that this material had been largely destroyed. Fortunately an affidavit survives in which Bishop recounted critical aspects of his employment with Distillers.
Marie-Louise Bishop had given birth to the couple’s sixth child in July 1960. In October 1960, she was upset to learn she had fallen pregnant again, and was given thalidomide tablets by her husband to calm her anxiety. Then, during June 1961, just before the baby was due, John Bishop and his immediate boss John Creswick had dinner with Bill Poole, who had flown in from Sydney. According to Bishop’s affidavit:
During the course of the dinner Mr Creswick mentioned to Mr Poole that the Children’s Hospital in Adelaide was very pleased with thalidomide. Mr Poole then said ‘don’t count your chickens before they are hatched. We had a report from a doctor in Sydney last week about Distaval and abnormalities in the foetus.’ It was plain that Mr Poole was worried and disturbed about this report. He was clearly not taking the matter lightly.
Shortly after the dinner, on 28 July 1961, Barbara-Ann was born with severe malformations. Her parents were devastated. Then Bishop remembered giving his wife Distaval tablets. ‘I also remembered what Mr Poole had said a few weeks earlier over the dinner table. It looked to me as if thalidomide might very well have been the cause for my child’s deformities. I mentioned this to Mr Creswick, my immediate superior.’ Bishop had no doubt whatsoever about the timing of his dinner with Poole: it was just weeks before his daughter was born, and the warning Poole gave at the dinner only assumed terrible personal significance with the birth of his daughter.
Nothing came of Bishop’s report to Creswick and Poole did not contact him. Years after the disaster, Bishop was still angry with Poole and Distillers, and willing to help the Sunday Times in its fight with his old employer. Poole’s response to Bishop’s allegations? He swore that he had never said any such thing to Bishop and had not known about the potential danger of thalidomide until much later. It amounted to accusing Bishop of lying. Poole had no shame.
John Bishop’s daughter Barbara-Ann has never had any doubt about her dad’s story, but was pleased to hear that Woodhouse’s account made it clear her father was right. ‘Dad was a highly principled man, honest to a fault,’ she said. ‘Poole was a liar, plain and simple. And the liar tried to smear the good man. You have to wonder how Poole lived with himself.’
Shortly after the sale of thalidomide was halted in Australia, London head office asked the Australian branch to get hold of a thalidomide-damaged foetus and send it to London so that Distillers’ medical advisers could examine it. Why the Australians were asked to supply a foetus is unclear: there was a much greater epidemic of malformed and dead babies in the UK. Perhaps the Australian branch had developed a can-do reputation within the Distillers organisation.
The Australian office set about the task and somehow managed to procure the required foetus, which was duly packed up and shipped to London. There is no clear information about the source of the foetus, however a curious letter written by McBride a decade later suggests that he may have assisted.
In 1973, McBride wrote to Distillers asking what had happened to the Australian foetus sent to London eleven years earlier. Distillers wrote back advising that on arrival in London the foetus had been sent out for post-mortem at Queen Charlotte’s maternity hospital. The fate of the foetus was now unknown. The Distillers letter writer concluded: ‘I am told that it is unlikely that the foetus itself will have been preserved but there may well have been some slides.’
Another issue for the Australian office in the wake of the disaster was what to do with the eight million thalidomide tablets at its Sydney warehouse. The company’s first move was to attempt to persuade the Australian Government to assume responsibility for the dangerous pills and use them for medical research. The only condition attached to the proposed ‘gift’ was that the tablets be repackaged in plain cartons, without Distillers’ name mentioned anywhere.
The government refused. Distillers then lobbied various other medical research bodies, but could find no takers. Finally the company had no choice but to destroy the surplus thalidomide, and in July 1963 the job was given to Woodhouse (he now worked for Eli Lilly, to whom Distillers had sold its pharmaceutical business). Woodhouse organised for a truck to make repeated trips carrying the millions of pills from the storehouse to a furnace at Pyrmont in Sydney. ‘The truck tipped the pills in their glass containers straight into the furnace,’ Woodhouse remembered. ‘This went on for so long that the manager of the furnace complained that the amount of molten glass in the furnace had clogged it and the furnace had to be turned off and the glass allowed to cool before it was removed.’
The generosity and cooperation Woody Woodhouse extended to Lyn Rowe and her legal team did not end with his sworn affidavit. In 2013 he welcomed me and a filmmaker into his home for several hours, where we recorded him reading his statement and answering questions about his thalidomide experience. Woodhouse’s evidence was so crucial we wanted to preserve it on film. We were also considering showing it to Diageo’s lawyers to forcefully impress on them the strength of our case, the lengths we had gone to in preparing it, and the risks they faced at trial. Later that year I had dinner with Woody and Ursula Woodhouse. I told them I was planning to write a book and that if he agreed, Woody’s revelations would form an important part of the story. Woodhouse was enthusiastic and supportive, but I still had gnawing concerns about revealing his role. Would he be criticised for speaking out after so long, for opening old wounds? Would he be criticised for not speaking sooner? The fact is that Woodhouse’s willingness to speak the truth about a matter he could easily have left forever buried was courageous and laudable. Many Distillers employees who knew that McBride’s ghastly report had been ignored for months had taken that secret to their graves. Some, like Poole, had actively lied about it. Woodhouse had peeled away the deceit and exposed the truth. In doing so he played an important role in winning compensation for many thalidomide survivors.
I met with Bill McBride just once: in March 2013 at his Sydney apartment. His health was fading and his memory was not running at full speed. Initially he mistook me for an electrician he had booked to fix a hallway light. Once that was cleared up he ushered me into his lounge room, which enjoyed a spectacular view of the Sydney Harbour Bridge. Books about medical greats were stacked on the coffee table, including a thick tome about the scientists who unravelled the mystery of DNA’s double helix structure and won a Nobel Prize as a result. Once McBride imagined himself achieving similar distinction, though that had been long ago. Much of his wealth had been spent on court battles and his name conjured up fame and infamy in equal measure.
Yet, back in his glory days, McBride revelled in the attention his thalidomide triumph brought. In 1962 a Sydney newspaper named him man of the year. In 1971, he flew to Paris to accept a 250,000 franc prize from L’Institut de la Vie for his thalidomide work. In 1972 he was named Australian Father of the Year and used the occasion to promote a ‘good smack on the backside’ for errant children. Honour piled upon honour.
Were the fame and adulation deserved? As we’ve seen, McBride was conducting a ‘trial’ of the drug for Distillers. He was therefore obliged to be on the lookout for problems and that takes some of the shine off his achievement. But it was still a clever deduction. In the UK, there had been hundreds of thalidomide births by that time. In Germany there had been thousands. Yet no doctor in the UK or Germany implicated thalidomide before McBride. As Hans-Rudolf Wiedemann, one of the German investigators who helped identify the epidemic and who came close to identifying thalidomide as the cause, wrote years later of McBride’s June 1961 observation: ‘It is astonishing that in Germany where by [early 1961] far more than a thousand similarly malformed infants had been born, no obstetrician had then suspected a similar connection.’
Once McBride realised that thalidomide was maiming babies, however, his attempts to raise the alarm were mixed. McBride immediately reported his concerns in June 1961 to the Crown Street Hospital, telephoned Distillers and possibly wrote to a medical journal. A month later he warned another Distillers salesman. Several months later, after further malformations, and after a delay, he warned the company again and wrote (definitely this time) to multiple medical journals. Later in life McBride regretted not having forced the immediate withdrawal of the drug in mid-1961.
Now compare McBride’s efforts with those of Widukind Lenz, who did not suspect thalidomide might be maiming babies until early November 1961. Unlike McBride, Lenz did not have the advantage of having given thalidomide to dozens of his own pregnant patients. Yet within two weeks Lenz had done enough to force the drug’s withdrawal in Germany. In that period he worked feverishly gathering evidence, consulting with other doctors, confronting Grünenthal, involving the health authorities and speaking publicly, which ensured the thalidomide story got into the media.
So despite suspecting thalidomide almost five months after McBride, it was Lenz who, within days, compiled the evidence and created the pressure to have the drug withdrawn. That meant McBride, despite his head start, always shared with Lenz the distinction of having been the first to connect thalidomide with disaster.
McBride’s attitude to Grünenthal in the years afterwards also appears to have differed from Lenz’s. During the lead-up to the German criminal trial, McBride met with Grünenthal executives twice. The German company was especially interested in enlisting McBride to help with the offensive argument that thalidomide was a drug which somehow saved malformed babies from aborting and thereby allowed them to survive to birth. (As Grünenthal put it in a 1968 letter to McBride, the theory was that far from being a malforming agent, thalidomide might actually ‘protect’ an already damaged foetus from ‘early death’. Grünenthal told McBride this perverse thesis was ‘based primarily’ on McBride’s cases; McBride had not raised this thesis himself.)
As it turned out McBride did not give evidence at the trial, which was halted mid-stream. But he obviously felt his advice had been valuable to Grünenthal. Years later, in 1974, he tried to persuade the company to pay him for his work and was met with a firm refusal.
In 1972, at the height of his fame, McBride established Foundation 41, so named for its focus on the forty weeks of pregnancy and the first week of life. McBride courted publicity, leveraged his reputation to raise funds, and combined his work as a doctor with scientific research at the foundation. To what extent that research added to the sum of human knowledge is the subject of some debate. One respected embryologist has spoken of his excitement at meeting McBride in the 1970s.
I was young and McBride was the hero of thalidomide. So when he came into my lab to spend an hour with me I was thrilled and honoured. We started talking and within about five minutes I felt shattered. It was clear that McBride had only the most basic grip on embryological concepts. I soon realised he was a medical doctor who’d been in the right place at the right time and had cleverly connected thalidomide with the deformities he’d seen. But he had no claim to being a medical researcher.
McBride also developed a reputation for making public pronouncements about drugs without having assembled compelling evidence. Perhaps he was determined to avoid another thalidomide-type tragedy. Or maybe he was determined to have a second heroic success. In 1972 he caused a media storm, and a flurry of activity by health authorities, by accusing a well-known antidepressant of causing birth malformations. McBride produced no persuasive evidence for his claims, and the drug is still not classified as a teratogen. Yet that episode was only a warm-up for the career-ending disaster which followed.
In the late 1970s McBride became convinced that the morning sickness medication Debendox (Bendectin in the US) was a ‘low grade teratogen’ capable of causing severe limb damage. He gave evidence in several high-profile US trials for alleged victims of the drug, once clashing with Lenz, who gave evidence for the manufacturer. There was never clear proof the drug was a teratogen, and a significant body of research has proclaimed it safe. The FDA, for example, even today considers it safe for use in pregnancy. But McBride’s status as the man who had unmasked thalidomide carried great cachet. The number of claims against the manufacturer ballooned, and eventually the drug was withdrawn from sale. In the course of this anti-Debendox crusading, McBride had researchers at his Foundation 41 do some research on an anti-cholinergic drug (Debendox had an anti-cholinergic component). Two years later the researchers were shocked when a journal article appeared under McBride’s name and theirs about the work. Their shock turned to horror when it became apparent to them that McBride had manipulated the data—changing figures, creating control rabbits when none existed, and exaggerating the number of birth malformations. The manipulated results gave support to McBride’s contention that Debendox was a teratogen.
The controversy found its way into the media, and in 1988 a Foundation 41 inquiry declared McBride ‘lacking in scientific integrity’ and guilty of ‘deliberate falsification’. Amid a chorus of condemnation, McBride quit the Foundation. But that was not the end of his public shaming. The next year a health department inquiry began; in 1993 McBride was again found guilty of manipulating data and reprehensible conduct, and his licence to practise medicine was revoked. (His licence was restored in 1998.)
When I met McBride in 2013 he reminisced about his horror as a medical student when confronted with the preserved malformed foetuses at the university. ‘Strange that I should have devoted my life to congenital malformations after that.’ He was reluctant to look back at the ups and downs of his career. Would he have been better off without his thalidomide encounter? ‘No, not at all,’ he responded. But it was clear that he missed the adulation that for years had been his prize. When his telephone rang he was startled and joked that people rarely rang him anymore. ‘It’s much better being in the public spotlight than all alone,’ he concluded sadly.
In the early 1970s, while he was still an icon of Australian medicine, McBride examined Mary Henley-Collopy, a young girl who was a candidate for thalidomide compensation. At the time there was no evidence that Henley-Collopy’s mother had taken the drug—that did not emerge until later when her birth parents were located and interviewed. But McBride was utterly convinced by Henley-Collopy’s highly typical and very severe injuries and said he would ‘stake my reputation’ on thalidomide having been the cause. A doctor’s note not long after her birth described Henley-Collopy’s injuries this way: ‘Has some fingers on stumps coming from each shoulder, feet from thighs an inch in length.’ In 1974 Henley-Collopy was granted a modest lump sum in an out-of-court settlement with Distillers.
In the years afterwards, Henley-Collopy overcame enormous hurdles to carve for herself a successful career, build a supportive network and travel overseas. And in 2010 it was Henley-Collopy who, after listening to Peter Gordon speak at a Sydney conference, encouraged Wendy Rowe to seek legal advice for her daughter Lyn.
Over the course of the litigation Henley-Collopy became a good friend to our office, often visiting when she travelled to Melbourne from her home in a country town about six hours away, a trip she usually made alone by bus and train. Occasionally, she drove her own modified van. Frequently Henley-Collopy and I had coffee together, always taking an outdoors seat so that Henley-Collopy could indulge her nicotine addition, ‘something I’ve been trying to break for about thirty years’. Like many thalidomide survivors, Henley-Collopy is dextrous and makes best use of what she has, employing a combination of her mouth, fingers and toes to light and smoke a cigarette, use her mobile phone or rifle through her handbag.
As a recognised thalidomider, Henley-Collopy was not part of the group of uncompensated survivors headed by Lyn Rowe. But Henley-Collopy had known Lyn since childhood and was a valuable source of information and advice for Lyn’s team. Henley-Collopy was also a potential witness in Lyn’s case because she offered us a nuanced insight into the experience of being a profoundly injured survivor. It was an insight we wanted to present at trial, but not one easily gained from Lyn herself. One of Lyn’s great strengths is that she is relentlessly positive. ‘I don’t really think about what might have been,’ she told me once. ‘To be quite honest, I can’t change anything, so why think about it?’ Of course Lyn does get frustrated and unhappy and frightened and resentful like everyone else. But she never gets down for long, and she does not like to talk about it. ‘Lyn keeps going,’ Wendy said. ‘She gets unhappy if her chair breaks down, for example, but she doesn’t let herself dwell on the fact that she doesn’t have limbs, and she certainly doesn’t complain about it.’
Henley-Collopy has led a very different life from Lyn Rowe. Unlike Lyn, she does get some assistance from her massively damaged limbs and digits. She also has a sharp mind, which she has used to get a university education, and she has worked as a social worker and grief counsellor, frequently with other people with disabilities. Lyn, of course, suffered brain damage before her first birthday, compounding her already overwhelming disadvantage.
Henley-Collopy was raised in foster homes and has fought a complex struggle for everything she gained, including an independent life and a relationship with her birth parents. As we got to know her we understood more of her own remarkable story, a story she related with deep insight and honesty.
Mary was born in Perth in October 1961, the child of an unmarried couple, thirty-four-year-old Dulcie Henley (a ‘housekeeper’ according to government records) and thirty-five-year-old William Collopy, a railway worker. While Dulcie was anxious to marry William, ‘circumstances were preventing it’, according to a carefully worded and somewhat obscure government file note. Perhaps the ‘circumstances’ contributed to Dulcie’s self-described ‘highly strung and nervy’ state during the pregnancy, a state which led a Perth doctor to prescribe her sedatives.
A government investigator later found a note on Henley-Collopy’s surgery card which made reference to her tiny limbs: ‘Seal baby due to Distaval.’ Many years later when Henley-Collopy accessed her government files, she discovered that her mother held her for just two hours at the hospital after her birth. ‘Baby Mary’ became a ward of the state and remained so until her twenty-first birthday.
Henley-Collopy lived in a number of group homes in Perth, and then with foster parents who were paid forty-five shillings a week to care for her. She was removed from that family after an inspector found the foster mother ‘tends to flaunt the child’s disability in public, and glories in the reflected notoriety’.
At twenty-one months, Henley-Collopy was, according to a child welfare department memorandum, ‘a bright looking child, fat and healthy looking, although reported to be mentally retarded. She rolls in the cot and holds rattles in her flippers’.
The Western Australian authorities wanted Henley-Collopy to have access to the latest in prosthetic limbs. An attempt was made to find her a place at Chailey House in the UK, where many thalidomide children were treated, but no places were available. So Henley-Collopy was sent across the country for treatment at Melbourne’s Royal Children’s Hospital. Before she departed Perth there was a determined effort to raise money to cover her costs. Rocker Johnny O’Keefe performed a fundraiser at a Perth radio station, and together with some lottery proceeds and public donations, almost eight thousand pounds was collected.
Henley-Collopy’s parents visited her before she left for Melbourne. A social worker supervised the visit, described the parents as ‘reasonable people’, and speculated that Mary might one day be returned to their care. After that pre-departure visit, Henley-Collopy did not see her birth parents for almost thirty years.
On 19 September 1963, not yet two years old, Henley-Collopy flew to Melbourne accompanied by a nurse. Sister Ellis stayed in Melbourne for two weeks, and noted Mary was ‘withdrawn with other people and was not eating as much as when in Western Australia’. Henley-Collopy lived at the hospital for eighteen months, surely a barren and austere home for a very young child. Finally, in April 1965, she was able to move into less irregular surroundings. A former physiotherapist at the hospital, Margaret Green, set up a home for disabled children, which she named the Christian Service Centre, and Henley-Collopy lived there for twenty years.
‘I still remember the day I went there and Margaret Green became my mother. She was a very strong woman with a very rigid Christian faith. She never married, never had any biological children of her own and we became her children. We all called her Mum,’ Henley-Collopy recalled. ‘There were usually about eight children living there. Some of us stayed for years, others for much shorter periods.’
There were two bedrooms for the children, one for the boys and one for the girls. ‘I remember my surprise years later when I first saw a queen-size bed. I didn’t even know such things existed.’
Margaret Green was a fundamentalist Baptist and ran a very tight ship. ‘We said grace before every single meal, and then every night after dinner we’d sit around the dinner table and have bible readings, songs and prayer,’ Henley-Collopy said. ‘As we got a bit older we learned to ask for the shortest songs. Once I asked for “God Save the Queen” and everybody laughed at me. I said, “Well it has God in it!”’
On Sundays Margaret Green ‘went into overdrive’, Henley-Collopy said. ‘There was no television, no outings, no knitting, nothing was allowed that could be regarded as fun or work. We went to a church service in the morning, then Christian youth group at the church in the afternoon and then back to church again on Sunday evening.’
Margaret Green believed it was wrong to seek funding for the home, or to ask for payment. She believed God would provide. In a letter about Mary, she wrote: ‘We pray about each child we take, and believe it is right for Mary to be with us, and we trust God to supply all her needs as He has done for others.’
A visitor to the centre in July 1965 described Mary as a ‘charming little girl, with soft brown hair, a frequent smile and friendly manner, full of chatter and using her malformed limbs in such a remarkable way that she finds her prostheses somewhat irritating’. The visitor found Miss Green devoted and caring, but somewhat over-possessive. ‘She wants to weld these children into her family and I had the feeling that she did not want them to have too many outside contacts.’
In July 1969 a government report described Henley-Collopy as ‘extremely intelligent’ and ‘reading very fluently for a child in grade two’. Despite this glowing assessment Henley-Collopy attended a primary school for disabled children, Yooralla. This was where she met Lyn Rowe.
Finally at fifteen she swapped to a mainstream school, Balwyn High. ‘I was desperate to get there. I was far behind—academically and socially—but I loved it. I just wanted to learn.’ After high school Henley-Collopy suffered her first bout of depression when she could not find work. ‘Nobody would help, it seemed hopeless. I spent a year thinking, what am I going to do for the rest of my life? I was living with Mum in Box Hill, nowhere near public transport, isolated and depressed.’
But the next year Henley-Collopy started a two-year diploma in welfare studies. ‘Getting to and from college was a nightmare but the course was great.’ After graduating in 1983, she was offered a student placement with the Australian Government’s Department of Social Security, and she ultimately worked there for twenty years, initially as a locum but then full-time. Along the way Henley-Collopy also did a degree in social work and qualified as a grief counsellor.
It was not until she was in her late twenties that she first raised with Margaret Green the possibility of getting in touch with her birth parents. ‘I’d been nervous about it, because I didn’t want to upset her. But she was great. She said she knew I needed to do it.’ With the help of a government agency Henley-Collopy managed to obtain an address for her birth parents, who were living in Sydney. Margaret Green, who Henley-Collopy often refers to as her Melbourne mum, wrote them a letter asking whether they would agree to contact with Mary. ‘I thought that might be a better, less confronting approach than me contacting them out of the blue,’ Henley-Collopy said.
Months passed without a response. But Henley-Collopy and her Melbourne mum were not giving up. Remarkably, Margaret Green decided she would take the train to Sydney and find her way to Henley-Collopy’s birth parents’ home. ‘It was brave of her,’ Mary remembered. ‘I got some photos taken of me doing normal things like pouring a kettle and knitting and gave them to her. I wanted my parents to know that I could do things for myself. I saw Mum off at the train station and spent the next twenty-four hours on tenterhooks. Every bone in my body said this might not go well.’
But the November 1989 visit was a success. Her birth parents were put at ease by Margaret Green’s message that Henley-Collopy bore no grudge about having been given up at birth, and that she very much wanted to meet them. So, a few months later, Margaret Green and Mary Henley-Collopy flew to Sydney, where in February 1990 Henley-Collopy met Dulcie Mary and William John for the first time since 1963. It was the first meeting with her birth parents in Henley-Collopy’s memory.
‘The first thing my mum, Dulcie, said to me was I’m sorry for giving you Mary as a name. I said I’m just glad you didn’t call me Dulcie.’ The meeting was emotional but rewarding. ‘Most of all I wanted them to know I was OK,’ Henley-Collopy said. She quickly forged a bond with her father; a bit more slowly with her mother. ‘I already had a mother, but I always craved a father. I used to cry all day on Father’s Day. Mum probably also had a bit more emotional baggage about giving me up than Dad did.’
Henley-Collopy kept up weekly contact with her birth parents afterwards and added Collopy to her name: until then she had been Mary Henley. She feels grateful she found her birth parents when she did because her father died two years later in 1992 and her mother in 1996. Henley-Collopy’s Melbourne mum, Margaret Green, died in 1999. ‘Many of the children who had grown up in that home gathered at the hospital right at the end. It was quite a scene. All these adults in wheelchairs calling this unconscious woman Mum. The nurses didn’t know what to make of it.’
Henley-Collopy is a direct and forthright woman, and is open about some of her struggles. ‘There was a time when my friends were partnering up and going on dates and having fun. Eventually they got married and had families. I got the same sort of crushes as anybody else but I knew it wasn’t going to happen for me. That hurt very badly.’ Through grit and determination, Henley-Collopy did some of the things she wanted to do, such as living alone and travelling overseas. ‘But it’s a struggle, things happen slowly when you’re in a wheelchair and it’s expensive.’ As she ages she is ever more reliant on care and help.
Henley-Collopy receives an annual pension from Diageo (Distillers), though she worries about her future. ‘Diageo has tried to do something about the shocking thing that was done to us. It can’t be fixed, but Diageo’s cheques help us lead better lives. On the other hand Grünenthal won’t give us a dollar. Ask the Grünenthal bosses what they think my arms and legs are worth. See if you can get an answer to that.’
Her central concern, Henley-Collopy said, is living with dignity.
Death doesn’t scare me. I grew up around death. Lots of children I lived with and went to school with died young. So the end doesn’t hold any great fears for me. But I want to live the time I have left with dignity and independence, and we need money and help to do that. I reckon I have done all right with what I have, but nobody would choose to be born this way. It’s hard. Life’s a struggle. It’s trite to say it’s not fair, and I don’t say that. But it’s not bloody right. It should never have happened to anyone.