Barry De Geest: 'We were used as guinea pigs'

Barry De Geest is a vigorous fifty-something man; a talker and a doer.

He’s an entrepreneur and a public speaker, is active in the disability sector as an advocate for change -  he was involved in making public transport and movie cinemas accessible for wheelchairs, among other things. De Geest has achieved a lot.

He’s also the oldest thalidomide survivor in New Zealand. When he was born, the medical profession didn’t expect him to survive. The doctors told his mother to forget about him and go have another baby.

But she didn’t listen.

Thalidomide was developed in West Germany in the late 1950s. Within a few year it was being prescribed for anxiety, insomnia and gastritis. The drug was sold under several other names such as contergan, Inmunoprin, Distival, Talidex, Talizer, Neurosedyn, Oncothal and Talimyde.

It was also deemed safe during pregnancy and used as a treatment for morning sickness. Barry’s mum Anne Kapohe was given a sample by her well-meaning doctor in Ōamaru.

But no one knew then that when ingested in the early stages of pregnancy, the drug had serious side effects and caused severe deformities in unborn children.

These can include shortened limbs and hands and feet without the usual number of fingers and toes. Some babies were missing sexual organs or had damaged and under-developed internal organs. Others were born deaf and blind.

Around 10,000 babies around the world were affected. Grunenthal, the company who developed the drug, are still in operation. On their website, they refer to the "thalidomide tragedy"  as "a significant part of our corporate history. Grünenthal’s family owners, and the company as a whole, deeply regret the consequences of this tragedy."

Relatively speaking, New Zealand got off lightly. There were only 21 cases here and according to De Geest, the saving grace was our isolation as the drug was not distributed widely.

“Transport services weren’t that great in the early sixties so things took a long time to travel around the country,” he says.

When Barry was born, his parents were advised to put him into care and let others raise him.

“I would have gone to the Home of Compassion in Wellington and been brought up as an orphan."

De Geest says when the Home closed, many of the residents ended up at another facility in Waipukurau. He’s heard stories from there of ill treatment and outright abuse.

“It was an institution so a lot of the staff got away with things that they couldn’t in a home."  

Luckily, Barry’s mum had a different plan. For six months Anne visited him daily in the hospital for feeding and when it was clear he would live, took him home.

Thanks to her, De Geest had a well-rounded upbringing, along with a solid group of friends who never saw his disability. His physical differences never stopped him from trying new things. As a teen, he was in the school rowing team and he also learnt to rifle shoot.

But until the age of ten, Barry was forced to endure regular and unpleasant medical examinations. The doctors were trying to make sense of his condition but never gave any explanation for these gruelling sessions where he was poked and prodded, and blood samples were extracted.

“We were treated as lab rats."

Barry says that was the way it was back then. Doctor were like gods and you did what they told you.

Up to a point.

As a child Barry was also offered artificial limbs to make him ‘normal,’ but which did nothing but constrain his mobility. He quickly rejected them.

“They were hot and made of a fibreglass-type product. They had [really ugly] looking hooks at the end of them.”

De Geest says they looked so gruesome that the sight of them made other children cry. Not only that, but they also made him even more disabled.

“Can you imagine having no arms and being made to be the same height as everyone else...you just fall over,” he says. 

During his childhood and through a large part of his adult life De Geest had never met anyone else with the same condition. In fact, his parents had been advised against it.

But in 2012 that all changed.

Barry attended a commemorative event in London which marked just over 50 years since the withdrawal of Thalidomide. It was also the 50th anniversary of the formation of the Thalidomide Society.

Here he came face-to-face with other Thalidomide survivors from around the UK, as well as from Canada and Brazil. He says there were a few Australians in the mix, too.

But the event was a lot more confronting than he expected.

“You have to understand that in New Zealand I was special and then all of a sudden there’s all these people like me,” he says.

De Geest immediately left the event, but returned later and for the first time in his life he felt a sense of belonging.

“These people were just like me."

They shared mutual stories of hardship and pain and De Geest describes the UK survivors as being much like a family - they were so comfortable with one another that they would laugh and joke, and even argue like siblings.

“They had known each other from birth,” he says.

One attendee even shared the story of a doctor who had left a baby to die, a decision he regrets to this day after seeing the rich lives that many thalidomide survivors have had.

Fifty-eight years on from his birth, De Geest is robust, energetic and embodies a sense of ‘nothing will get me down.’

He confesses to the odd low moment, but quickly breaks out of those. These days, he’s more aware of his body slowing down. He suffers from back pain and tires more easily and says his condition wears the body down a lot faster. In general, though, he says he loves the life he has.

Perhaps surprisingly, Thalidomide is still being prescribed. In South America and India the drug is used as a treatment for leprosy and a bone marrow cancer known as multiple myeloma. In these communities there is little or no warning about the side effects of the drug, which is in many cases passed around the community and onto family members. There are large numbers of birth defects in babies as a result of mis-use.

Bruce is also philosophical about this.

“A lot of Thalidomide survivors say it should be destroyed,” he says.

“But if it helps people then it’s good. I don’t think there’s any simple answer. But unless they can come up with an alternative, then why stop it?”

This episode of Eyewitness was made using audio from Ngā Taonga Sound and Vision.