Irish 'thalidomiders' are noticing a sharp deterioration in their physical condition as they age and want the Government to improve their 'meagre' compensation, writes Rósín Ingle
'I'VE ALWAYS CONSIDERED myself a lucky person," says Dublin woman Finola Cassidy. "I spent the majority of my life pretending I wasn't disabled, getting on in life by doubling my efforts with everything I took on so the disability wouldn't rear its head."
Cassidy is secretary of the Irish Thalidomide Association (ITA) and one of 31 living survivors of Thalidomide in Ireland, a group she describes as "the most tenacious bunch of people you could ever meet". Pretending she isn't disabled is much more of a challenge in middle age, when the physical condition of all those affected by thalidomide rapidly deteriorates. "We are falling apart," as Cassidy puts it simply.
Doctors, lawyers, artists, business people, mothers, fathers, husbands and wives - over almost 50 years, Irish "thalidomiders" have led successful lives despite their disabilities, which were the result of a morning-sickness pill first made by German company Grunenthal and administered to some Irish women in early pregnancy from 1960. Around 10,000 babies around the world were born with defects caused by the drug, ranging from malformed limbs to no arms or legs. An estimated 3,500 survive. At one point there were 33 in Ireland, two of whom have since died, but this figure does not take into account those described as "unacknowledged". Five of this group were sent to Sweden for assessment by the Department of Health and are awaiting the outcome.
Cassidy (47) says she was "blessed" by the family she was born into, by her husband and three children and by her friends. Her own disability is a shortened left arm, with only four fingers on that hand. "The left arm is powerless, it does nothing, so it's always been me doing everything with the one arm and hand, but the difficulties that have materialised in the last two or three years have been quite a shock to the system. I just can't ignore the fact that I have physically deteriorated so much," she says.
Self-employed in the furniture-importing business, Cassidy gave up work because she was no longer able to travel long distances to trade fairs around the world. She suffers with fibromyalgia, a condition affecting all the joints and that leads to chronic pain and fatigue. It has necessitated her curtailing her life severely, with everyday tasks such as chopping vegetables for the family meal becoming a challenge. "You deal with one injury or strain because you've been compensating for another part of your body all your life, and then something else gives. It's like a rollercoaster," she says.
Thalidomiders have for years, she explains, been "bending, straining and using our bodies in ways that were never intended". The ITA was formed because as they entered their forties the group began to notice a dramatic deterioration in their physical condition. "A lot of our members are having to leave work or are struggling on in jobs they can't afford to leave. They are facing difficult life choices and need financial security as they head into the final third of their lives," she says.
EARLIER THIS YEAR, the ITA entered talks with the Department of Health about reviewing the provisions made in 1975 for those affected by thalidomide. That settlement comprised a lump sum and a monthly pension for life, supplementing compensation awarded by the German government, which eventually accepted liability. While Irish authorities never accepted liability for the tragedy, the Department of Health was the regulatory authority for drugs at the time when the drug was on the shelves of pharmacies and GP's surgeries. In that pre-tribunals era, the parents of those affected by thalidomide fought hard for a settlement that, considering the size of subsequent payments made to groups such as those affected by the Hepatitis C scandal, was, according to Cassidy, "meagre". The lump sums at the time, when those affected were around 12 years old, were a few thousand euro. Depending on the level of disability the pension now ranges from €16-€35 per day.
The association has been busy collecting hard evidence to prove to the Government that those affected by thalidomide are facing greater challenges than ever as they age. Thalidomide survivor Dr Austin O'Carroll (46), a GP in Dublin city centre, recently co-authored a study into the condition of those affected by thalidomide. His own experience is telling. For most of his life he was able to walk a mile-and-a-half but he now struggles to go half a mile down the road. "I can still cycle up to 60 miles because cycling exerts far less pressure on the limbs than walking," he says.
The changes to his own condition, he explains, became more obvious in his 30s and escalated in the last few years. "I got a wheelchair in the airport for the first time in my life last month," he says. "I am only in my 40s so it does make me wonder what it will be like for me in 10 years time. The walking is the big thing I miss out on. I have two children aged five and seven and when we go to the country I can't go for walks with them, which is something I really miss."
O'Carroll was born with shortened legs and a thumb deformity. He couldn't walk until he was five years old and was in calipers until he was 12. "As a child you have the usual issues - I wanted to be a soccer player but then I used to have to sit inside during sports. When I applied to do medicine doctors told me I couldn't become a doctor because of my hands," he says. He studied law at Trinity College Dublin instead, and, in his second year, Mary McAleese helped to get him transferred to medicine.
O'Carroll's study, undertaken with Prof David Whitford and Fiona O'Reilly, is called What Has Happened to Them 50 Years On? A Review of Disability in People Affected by Thalidomide. The findings showed that just over a third of those surveyed were no longer working due to their disability, two-thirds confirmed that their disability had worsened, while half described the deterioration of their condition as "moderate to severe".
Pain management was found to be a significant problem for thalidomiders, with more than half reporting regular pain. The full report is expected to be published by the end of the year.
AS THOSE AFFECTED by thalidomide grow older, another issue for the more severely disabled is the death of their primary carers, which in many cases are their parents. In addition to his physical deformities as a result of thalidomide - his late mother, Maureen, was prescribed the drug because her first daughter was stillborn - Dubliner Joseph Dooley (47) was born with significant learning difficulties. He lived in a cot in a Dublin hospital for the first three years of his life, and his cousin Patricia Yates, a nurse who works with the intellectually disabled in England, says at the time his mother was told by staff to "just leave him there".
"But she refused," says Yates. "She spent her life devoted to Joseph, bringing him to America for specialised care, where he was taught a programme which resulted in increased mobility and he came on so much."
Maureen Dooley died earlier this year and Yates and her mother have moved over from England to take over care duties. "I grew up with Joseph," says Yates, who has applied for the carer's allowance but is uncertain when it might come through. "We always knew this would happen, we were prepared for it. We just want to give him the best care, we promised Maureen that's what we would do."
THIS WEEK the International Contergan Thalidomide Alliance, an international lobby group, continued its campaign for a global settlement with a rally at the German embassy in London. Finola Cassidy attended the rally and reports that governments "all over Europe are sitting down with survivors to sort out, once and for all, a proper financial package". At home, the Irish Thalidomide Association is hoping that the Department of Health will look sympathetically on their case.
"The bottom line," says Cassidy, "is that thalidomide didn't happen on this government's watch. We don't want to open a can of worms, we want to look ahead and put all our energies into what is going to happen now."
She says members hope the Department will "come on board and accept that there was an injustice done back in 1975" when battle-weary parents of thalidomide survivors accepted "meagre" compensation.
"It's to our credit that we haven't gone back to the government for support in 33 years," says Cassidy. "The truth is that each and every member has been too busy getting on with their lives. Now we are in crisis and as we face these increasing challenges into our 40s, 50s and 60s we just want dignity and justice and a way to manage that will give us the best quality of life into the future."
Bolstered by painkillers, Cassidy continues to give "110 per cent" in her life. She still plays tennis, for example. "I am not very good at doing my laces, so I am well known at the club - I just put my foot out and someone does them up," she laughs. "I am deadly at the net, my grip is very weird but I get away with it. Playing hurts but it's worth the pain."
www.thalidomideireland.com
Telephone: 086-9151235
THALIDOMIDE A BRIEF HISTORY
Thalidomide was first launched in 1957 by German company Grunenthal. It was sold in 46 countries and marketed to pregnant women around the world as an anti-morning sickness pill.
The drug was banned in the early 1960s after it was found to cause deformed limbs in the children of women who took it in early pregnancy. There are about 3,500 people worldwide affected by thalidomide, and 31 of these are in Ireland. Thalidomide was not allowed to be marketed in the US in the 1960s after Dr Frances Kelsey discovered inconsistencies in the drug manufacturers' claims and blocked it. There are 14 "thalidomiders" in the US, the children of women who took part in trials of the drug. The drug is now being investigated for use in treating Aids, tuberculosis and other illnesses.