Sunday Business Post By Susan Mitchell, Health CorrespondentJoseph Dooley knows something is not quite right. Recently, he asked whether he was born in a factory.
This, he believed, may explain why he doesn’t look like the people he sees around him. It might explain why he was born without feet or thumbs and why he has intellectual difficulties.
‘‘He is intelligent enough to know he is not right," said Patricia Yates.
Yates is his first cousin. Their mothers were sisters and she and Joseph are only children. ‘‘We are a very close-knit family. I grew up coming over to Ireland every summer and knew Joseph from a very early age. He is like a brother," she said.
Dooley’s mother looked after him until her mid-80s, but needed help. Yates, a nurse who specialised in intellectual disability, was living in Britain but returned to Ireland in 2007 to support her aunt. It was supposed to be a temporary move, but she is still here and has become a permanent carer.
‘‘He appears profoundly mentally disabled, yet he has spikes of intelligence. He has interests. He didn’t go to school, but his mum taught him to read, which is quite amazing. He is really interested in medical stuff.
He reads about things like orthopaedics as he has had a lot of work done," Yates said.
Dooley needs ‘‘absolutely everything done for him. He needs help getting changed. He needs help with all personal care - with anything in the bathroom.
He doesn’t have thumbs. He has four fingers and he can’t do a lot with his hands. He has poor mobility. He was born with flipper feet. A surgeon made him feet so he can walk a little. He sort of hobbles really.
‘‘He also has poor digestion, so we have to take great care with what he eats. I make his meals and cut his food up for him. He can eat by himself but, because he has difficulty digesting his food, you can’t leave him on his own as he has been known to choke.
He needs constant supervision." Dooley’s mother took the anti-nausea drug thalidomide while pregnant with Dooley, who is now 49. He is one of 32 Irish survivors of the drug, which badly damaged their bodies, permanently scarring their lives and those of their families. Many are catastrophically disabled and four need 24-hour care.
Like thalidomide survivors all over the world, they and their families received a compensation package in 1975 which did not reflect the fact that they would live into middle age. However, unlike other survivors - such as the 466 British survivors who received a further €22 million and a comprehensive apology - the Irish ‘Thalidomiders’ have fought a lengthy battle with a Department of Health that has yet to open its records on the scandal and has stood firm on its offer of €62,500 each.
Dooley’s father, along with the father of Finola Cassidy, who is secretary of the Irish Thalidomide Association (ITA), set up the group Justice for Thalidomide. The state made a payment of a few thousand pounds to each ‘Thalidomider’ in the 1970s, but the necessary High Court approval for the original settlement, which involved legal minors, was not given.
The absence of this mandatory approval has rendered the original compensation package legally null and void, and has opened the way for survivors to individually sue the state for their injuries.
It is believed the then government’s legal advisers may not have offered the 1975 compensation deal for High Court approval because there was a real concern that a judge would have rejected the deal.
It is clear that the government of the day was worried that it had failed to warn people about the dangers of the drug before it was withdrawn. Then health minister Erskine Childers said many years later that the cabinet had decided not to warn people about the risk, so as not to alarm pregnant mothers at the time.
The drug was withdrawn by German pharmaceutical manufacturer Chemie Grinenthal in December 1961, but the Department of Health did not notify doctors and hospitals here until the following July. There are several Irish thalidomide survivors whose mothers began taking the drug as late as spring 1962.
The state gave survivors medical cards for life. Access to services and other aids are also supposed to be available as they need them. However, Cassidy disputes this.
‘‘In no way has that happened," she said. ‘‘Our Maggie Woods in Galway opens the doors in her home with her teeth as her house has not been adapted."
The ITA wants a statutory right to medical services, as was given to the hepatitis C victims. The ‘Thalidomiders’ believe they are entitled to no less.
Understandably, they also want an apology.
‘‘The minister said she could not do that as it would be an admission of liability," said Cassidy.
‘‘But there is an onus on the state to acknowledge the wrong that was done - not just to us, but to our parents. Many of our mothers had to live with huge guilt, anxiety and depression over what happened.
Many babies died. They and their families are often forgotten in all of this."
Health minister Mary Harney promised full voluntary disclosure of all documents relating to thalidomide in July.
‘‘Not a single file has crossed the table," said Cassidy. She said she was disappointed that Harney had had nothing new to say to the group last week.
‘‘She repeated the offer we rejected in April. She had nothing new to say. We asked if the payment could be treated as an interim settlement pending further negotiations of a care package, but she was not for turning."
It is a take-it-or-leave-it offer, as was the 1975 deal that was brokered between the then government and the families.
This time, however, they are not going to go away quietly.
The ITA plans to take legal action against Harney following her refusal to reconsider the compensation package offered in April.
The association believes the lump sums of €62,500 for each survivor, plus an annual lump sum of up to €3,680 is derisory.
It also believes a one-size fits all approach is misguided and wants survivors to be physically assessed and compensated on an individual basis.
The ITA does not believe the provision for special care packages - and financial assistance to help meet transport needs where necessary -would ensure access to care.
In the hepatitis C and haemophilia cases, the state initially fought against a comprehensive compensation package for survivors and their families, hiding behind legal arguments that admitted no wrong and made individuals take expensive legal fights through the courts for recognition of their suffering and a compensation package. It took several years to overturn this position.
Cassidy said she was ‘‘tired of fighting’’ for a fair deal.
Patricia Yates is also tired.
She never uses the word ‘burden’, but she would like to be able to spend more time with her son who lives in England and her husband who has been forced to commute back and forth.
She and her husband worked out that providing full-time care for Joseph would cost tens of thousands a year.
They don’t have that type of money, which is why the compensation is so important to them. ‘‘I will care for Joseph for as long as I possibly can.
My biggest worry is that I am not getting any younger and neither is my husband. If anything were to happen to me, my husband is not related to Joseph. I know he would do his best but that would be a huge undertaking for him," she said.
‘‘I am worried that, down the line, he will end up in an unsuitable institution and that would just be awful. He is a very gentle man and he is very vulnerable. We don’t know what will happen next. We would need to train people specifically to look after Joseph, as his needs are unique."
The ‘Thalidomiders’ are gaining political backing for their cause. Several Fianna Fáil backbenchers are known to be opposed to Harney’s stance on the compensation issue.
Most members of the Oireachtas health committee have offered their support.
Fine Gael and Labour have said Harney should have agreed to an interim arrangement.
In the hepatitis C and haemophilia cases, the government of the day was forced by legal argument and public opinion to change its mind.
The main opposition parties have promised to look at increased compensation for survivors if in government after the next election.
The next government is likely to be forced into a U-turn yet again.