Just weeks ago, Lisa McManus could easily sign her name. Now, she can’t pick up a pen.
She is one of many Australians left with severe disabilities after their mothers took medication containing thalidomide to treat morning sickness in the early 1960s.
McManus, whose mother took just two tablets containing thalidomide when she was pregnant, was born with severely malformed arms – just 15 centimetres long and each with only one working finger.
An ingredient in popular morning sickness medication in the late 1950s and early ’60s, thalidomide was later found to cause birth defects, with many children born without arms and legs and with damage to the nervous system, kidney and heart.
McManus is one of several thalidomide survivors in Australia who are approaching their 60s. As they face worsening medical conditions, and with some survivors on the verge of entering aged care, the fight for government acknowledgement and support has fast become urgent and desperate.
Now 56 years old, McManus has been told she has the health levels of an 80-year-old.
“Twelve months ago, I could make myself a Vegemite sandwich,” she says. “I can’t do that anymore. The kitchen isn’t modified for me – I can’t hold a bread and butter knife like I used to, and I can’t bend to meet the bench.
“It’s deteriorating at a terrible, terrible pace.”
With her condition worsening in recent years, McManus was forced to retire from part-time work in 2014. It was then she began campaigning for federal government recognition and support for thalidomide survivors, culminating in a senate inquiry that began last year.
The report, tabled in March, concluded the current Australian government has a “moral obligation” to provide support for those affected by thalidomide because of the “slow and lacklustre” response at the time. The committee was told that up to 20 per cent of survivors would not have experienced disabilities if the government had taken appropriate steps to recall the drug in the ’60s.
The report recommended the government give thalidomide survivors the support and financial assistance they need, along with a national apology.
For McManus, who runs Thalidomide Group Australia, the report offered newfound hope that there would be action. “We were at least vindicated and validated that we’d been heard,” she tells The Saturday Paper. “We felt very positive that we were going to move forward.”
In the nine months since the report was released though, the government has failed to act on the report or commit to any of its recommendations. And McManus’s hope has transformed into scepticism and anger.
“They have all just hoped we would have fallen off our perches and lost the gumption to keep the fight going,” she says. “We’re exhausted and we’re not trusting of whatever is told to us. We’ve been stung so many times.”
Health Minister Greg Hunt told The Saturday Paper the government is “currently considering” the recommendations of the inquiry.
“The recommendations outline a range of complex issues, which require extensive consideration to ensure the government’s response to the recommendations, including those relating to the provision of financial support, is meaningful and appropriate,” he said.
Hunt said he had written to McManus recently, indicating the government would be working with thalidomide survivors to “take steps toward a formal apology, a site for permanent recognition and long-term financial security and wellbeing”.
But survivors can’t wait for action. As recognised by the senate report, the “combination of symptoms has meant that thalidomide survivors’ bodies are rapidly deteriorating and most live with chronic pain”.
Greens senator Jordon Steele-John, a driving force behind the inquiry and its report, recently successfully moved a senate motion calling on the Coalition to “urgently respond” to the committee’s recommendations and provide a clear time line.
“At the conclusion of the report there was a lot of hope in the community, and I’ve watched with despair as that hope has turned into frustration, and now into anger as the government continues to drag its heels on this,” he tells The Saturday Paper.
In the absence of government support, Australian survivors have received some compensation from Diageo, the Australian distributor of the drug, though only through lawsuits and payouts.
But as the senate committee found, many thalidomide survivors have had difficulty accessing assistance through the National Disability Insurance Scheme, and other supports are not sufficient.
The report recommended survivors who have already been recognised by Diageo be provided with a lump-sum payment from the government, based on their level of disability. And for anyone who is yet to receive financial support to be provided with it, as soon as they are recognised as a thalidomide survivor.
These payments would be exempt from income tax and the social security income test.
The committee also urged the government to provide ongoing payments to these people to provide for the care and services they need, along with an extraordinary assistance fund to provide for major expenses such as home and vehicle modification.
These expenses would include ramps being installed in homes, hearing devices, home care and dental care, due to many survivors having to use their teeth for things such as opening bottles.
Germany, Japan and Britain each have their own national support schemes for thalidomide survivors, with the British government also making a national apology in 2010. Just this year, the Canadian government doubled the size of its support for survivors to $C1 million ($A1.1 million) annually.
But the Australian government has so far offered nothing and is yet to acknowledge any wrongdoing at the time, despite the report finding our response lagged behind other countries.
“We don’t think our disability is any more significant than so many others, but we were preventable and we were government-made,” McManus says. “The government was extremely, extremely negligent in looking after its citizens.”
McManus says she has been told no decision can be made on the government’s response until next year’s budget. “It would be ludicrous for us to sit back and wait until May when the good minister might have something in his pocket,” she says.
Minister Hunt pointed out that before the report was tabled, the Coalition had already committed to a national apology and public memorial for victims of thalidomide. The government wants to establish the memorial at the National Arboretum Canberra and would make the apology there.
But this has been rejected by thalidomide survivors, who are pushing for an apology to be made in parliament. McManus also says the proposed memorial site would not be accessible for many of the survivors.
“Most of us, if we’re even still alive, won’t be able to travel to see the beauty of this garden,” she says. “The accessibility was ludicrous. It was not designed by someone with people with disabilities in mind; it was just unacceptable.”
McManus will soon be leading thalidomide survivors around the country in a new campaign pushing for immediate government action. Thalidomide Group Australia is planning to hold a rally in Hunt’s electorate of Flinders before the end of the year, and another in Prime Minister Scott Morrison’s Cook electorate next year, before convening in Canberra for the first sitting week of 2020.
While the wait continues, McManus’s husband has been forced to sell his electrical business and stay home to care for her. Lisa regards herself as one of the lucky ones.
“There are survivors out there that have no one and we just haven’t got that time,” she says. “We can’t wait.”
This article was first published in the print edition of The Saturday Paper on Dec 14, 2019 as "A waiting shame". Subscribe here.