A thalidomide survivor says she had to “prove that my arms hadn’t grown” during humiliating exchanges with a government support agency that she now hopes are forever over after Anthony Albanese offered an “unreserved and overdue” apology to victims of the pharmaceutical disaster.
Trish Jackson’s mum had taken thalidomide, a drug prescribed to expectant mothers suffering from morning sickness during the late 1950s and early 1960s, while pregnant with her.
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Tragically, it was later found the tablets were causing significant birth defects in babies.
Jackson, 61, who lives with internal complications and shortened limbs, didn’t walk until she was almost seven years of age and had to be carried everywhere until she had major heart surgery at 12.
The Brisbane local says thalidomide “created my very confronting body image and the hardest part I think is living with the cruelness of people — the bullying has been horrid”.
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The intolerance extended to her treatment by doctors too, she said.
“Their questions were relentless until they made me cry,” Jackson told 7NEWS.com.au.
She couldn’t play sport or attend excursions as a child and told how her mum gave up her lunch break to drive to her school and make sure she was OK.
In Canberra on Wednesday, when Prime Minister Anthony Albanese delivered a national apology to survivors of the drug, Jackson shared heartbreaking claims about being shamed while trying to secure financial assistance soon after graduating from high school.
“I left school and went down to (the Department of Social Security) to get the dole because I didn’t have a job and they told me (that) people like me don’t work,” Jackson said.
“So I had to prove that I could work before they would give me the dole — so they sent me to a workshop for four months with no pay and I shoved plastic cutlery into paper bags.”
Thalidomide survivor Trish Jackson says she was humiliated trying to secure assistance from Centrelink. Credit: 7NEWS
Jackson said she completed her stint and returned to the agency only to be told: “That’s your place in society.”
She went on to work 15 years full-time before her health deteriorated and she again sought financial assistance.
“I went back to claim the disability pension (and) I wasn’t disabled enough. It was a two-year battle to get a disability pension,” she said.
“Every year after that I had to go back … to prove that my arms hadn’t grown.
“That’s the kind of thing we’ve dealt with and we don’t fit into any Centrelink squares. That’s hard.”
Services Australia was contacted for comment.
Defying what many people, including doctors, said she would never do, Jackson found work, got married and had a child of her own.
She said the government’s announcement “means a lot” and she hopes horrific stories like her own experiences are now over for good.
Thalidomide was commonly prescribed to pregnant woman in the late 1950s and early 1960s. Credit: 7NEWS
While there are 146 registered survivors in Australia, the exact number of people affected by thalidomide is unknown.
Thalidomide was distributed in 46 countries and an estimated 10,000 babies globally are believed to have been born with deformities.
The drug’s developer and manufacturer, German firm Grunenthal, has conceded the scandal would “always remain a part of our company’s history”.
During his “unreserved and overdue” apology speech on Wednesday, Albanese said survivors had been let down for decades by successive federal governments.
“We are sorry for the harm and the hurt and the hardship you have endured. We are sorry for all the cruelty you have had to bear. We are sorry for all the opportunities you have been denied,” he said.
“You have been survivors from the day you were born. More than that, you have been advocates, organisers, champions and warriors.”
Anthony Albanese met with thalidomide survivors and their families following a national apology. Credit: AAP
The Prime Minister also announced a support program for survivors would be reopened.
The support includes a one-off lump sum payment as well as an ongoing annual payment.
The news came 62 years after the drug for pregnant women was withdrawn from sale in Australia because it was linked to birth defects including the shortening and absence of limbs, malformation of hands and major internal organ damage.
“We understand an apology does not balance years of inaction and inadequate support. We know the toll of thalidomide is still felt today,” Albanese told parliament.
“These parents, these mothers did nothing wrong. These parents did not fail their children. The system failed them both.”
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A national apology was a key recommendation of a Senate inquiry into thalidomide in 2019 and survivors have been urging the government to reopen eligibility for the support scheme.
“It’s a step to closure. It’s the first step,” Jackson said.
“They’ve got to follow it up with actions by making the health fund so much easier because it is so physically demanding to be reimbursed for scripts and stuff like that.
“It’s a full-time job — the paperwork is just endless.
“It also means if you have someone helping you then they know all your information, there’s no privacy.
“When we put claims into it we have to have doctor reports. There’s no doctor-patient confidentiality because the health department needs to know everything about us.
“There just needs to be an easier way.”
‘Recognition of failure’
Thalidomide survivor Lisa McManus said the national apology was significant.
“It seemed like a very heartfelt apology from both sides, which is really what we’ve been wanting,” the director of Thalidomide Group Australia said.
“There was lots of recognition about the failures that have happened, and that’s something that we’ve just never heard before.”
McManus said the reopening of the support scheme was a welcome step.
“This has been a long and arduous battle and one that should never have needed to happen, and one that I certainly didn’t believe would be left for me to fight,” she said.
Thalidomide survivor Lisa McManus says the national apology was a significant step. Credit: AAP
Jackson said she wished other people affected by the drug could have also been there to witness the news in person.
“My parents are both 96 and they’re at home and they were too frail to come, that’s the sad part of it. They weren’t here to hear it. I think they should be the ones that hear it the most,” she said.
“For all the parents that aren’t here anymore, we’ll never forget them. What they went through, we’re still going through.”
A national site in recognition of thalidomide survivors will be unveiled on the shores of Lake Burley Griffin in Canberra on Thursday.
– With AAP