Not bitter - a battler

Barry de Geest,  with mobility dog Bentley, outside the Dunedin courthouse, wants the German...
Barry de Geest, with mobility dog Bentley, outside the Dunedin courthouse, wants the German company that developed thalidomide held accountable. Photo by Craig Baxter.
The 1950s wonder drug, thalidomide, turned out to be a prescription for disaster, producing thousands of deformed babies, and survivors like Barry de Geest now have their sights turned on the German company that developed it. Kim Dungey talks to the former Oamaru man about his mother's fight to keep him out of an institution, his own determination and attitudes to the disabled.

It may be 50 years since the drug thalidomide was launched in New Zealand, but Barry de Geest says a payout for survivors has come at the right time.

"You could say it's a bit late. Our life expectancy is in our 50s. But I look at it the other way - that it's a bonus at the time of life when you start to need more support."

Barry (then 14), goes for a ride on his scooter with dog Meka.  Photo by Oamaru Mail.
Barry (then 14), goes for a ride on his scooter with dog Meka. Photo by Oamaru Mail.
About 10,000 babies worldwide were left with disabilities such as short limbs, deafness and blindness after their pregnant mothers took thalidomide for morning sickness in the 1950s and '60s.

Now, a recently-negotiated deal will see 45 survivors in Australia and New Zealand share $3 million annually for 20 years.

The payment is a goodwill gesture by drinks company Diageo, which took over Distillers, the drug's original distributor.

Settlements in the 1970s ended the company's legal obligations but survivors sought more, saying the money was no longer adequate to provide the increasing care they needed.

At 21, Barry gets his first modified vehicle. Otago people raised $60,000 to import the Escort...
At 21, Barry gets his first modified vehicle. Otago people raised $60,000 to import the Escort from England. Photos supplied.
Some are no longer able to work. De Geest, who was born with no arms and short legs, is now in a wheelchair most of the time and needs to replace his modified vehicle.

Raised in Oamaru and 50 next month, he is the oldest of about 10 thalidomide survivors in New Zealand.

Under the agreement, he is not allowed to say how much he will receive but he "intends to live the next 20 years to claim it".

The first payment has already enabled him to buy a bus, which he is making wheelchair-accessible so he can travel in comfort.

The solo dad has taken his 17-year-old son on holiday, installed a bidet in his Auckland home and, because he had problems putting on reading glasses, had laser eye surgery.

Barry gives his nieces a ride in a trailer he used to cart his son around in. Photos supplied.
Barry gives his nieces a ride in a trailer he used to cart his son around in. Photos supplied.
"It means I can do a lot of the stuff I've always wanted to do," he says.

"And for a lot of survivors, it's actually going to be their lifeline."

Australian and New Zealand survivors have also started legal action against the German company that developed the drug.

A writ filed in the Victorian Supreme Court claims Grunenthal failed to carry out adequate testing of thalidomide and ignored or suppressed claims that it was causing deformities.

The action is supported by de Geest, who says the company needs to be accountable.

"Personally, I don't even care if we don't get an apology from the Government [in New Zealand], like they did in Britain. I just want to see the original people, who made a fortune out of it and who are living high in Germany, acknowledge what happened. Which they have never done."

He says the pharmaceutical company was motivated by greed.

"But I've never dwelled on it ... I've seen others who are still quite angry about the whole thing. Me - I just got on with life."

Part-owner of the Renaissance Group - the largest provider of supported living services in the Auckland region with 93 staff and 240 clients - he served three years on the Auckland District Health Board and works as a motivational speaker.

He has also been a tireless advocate for the rights of the disabled, taking the opportunity on a recent trip back to Otago to criticise local attitudes to the disabled.

"There are some good people here - don't get me wrong. But [disabled people] are still not seen as being valued in the community."

De Geest's mother was about two months pregnant when she went to her GP with nausea and was given some sample pills to try.

"Do you know I only took two?" the 73-year-old says from her Dunedin home.

"It was pretty powerful."

"I never liked taking pills. It was terrible when we found out [that they caused birth defects]. But nobody knew. It was no doctor's fault."

Now remarried and known as Anne Kapohe, she says doctors at the Oamaru maternity hospital covered Barry as soon as he was born and took him away.

A few days later, she persuaded a nurse to let her see him for the first time, an act of kindness that apparently resulted in the nurse's sacking.

Thinking he would not survive, doctors kept Barry in hospital, and every day for nine months, she walked there to feed him and play with him.

Then one day she took him home, despite warnings that she would never manage and that it would damage her older child, Jan.

"Barry deserved a family around him all the time," she says.

"We had our moments, like everyone else, but it turned out really good."

Within days of Barry's birth, doctors were suggesting he be put in an institution and relatives had checked a Wellington home for people with severe mental and physical disabilities.

"They were going to send him off and I said, `Over my dead body.' I thought it was the worst possible thing I could ever do."

"She saved me," de Geest says. "I was brought up as a regular child and I don't think I'd be where I am today [otherwise]."

Some of his disabled friends were not so lucky, growing up in "horrific" institutions.

"They were seen as safe places for people to live but because they were behind closed doors, a lot of abuse-* happened."

Anne was relieved when the link between thalidomide and birth defects was later made: "I had probably been blaming myself a bit."

But her GP had no record of giving her the drug, so when New Zealand survivors gained an out-of-court settlement in the 1970s, the family received only $30,000.

Now there is no doubt thalidomide was to blame, de Geest says.

As well as having no arms and short legs, he has no cartilage in the front of his nose, a smaller-than-normal canal in his right ear, no collarbones and no hip joints.

"There are disabilities similar to mine that are a genetic thing but this is quite distinctive."

His appearance meant he was teased at Oamaru North Primary School but it "wasn't too bad". Later, he told children he was missing arms because he chewed his fingernails too much and didn't eat his vegetables.

"The one thing parents always say to me in the work I do now is that they don't like the fact their kids get a hard time. But that's life and you learn how to deal with it ... The reality is, I am different and there's no point in trying to hide it or hide behind it."

In the early 1960s, however, disabled children were seldom seen in the community - the first time his mother took him on a bus, a female passenger told her it was disgraceful and she had no right to take the boy out in public.

She and her first husband, builder John de Geest, also had to fight to have him enrolled in a mainstream school.

Mrs Kapohe remembers the young Barry as a determined kid who had "something special about him".

He loved cubs and scouts, enjoyed his friends pushing him over the ramp at the local Wrightson store - his wheelchair racing over it like a jump - and later became coxswain for the Oamaru Rowing Club and an A-grade rifle shooter.

There were frustrations, however. The artificial limbs he wore until age 15 were more about giving him a normal appearance than improving his mobility.

He was unable to accompany his friends to Waitaki Boys' High School because it was not designed for wheelchairs, and he was 21 before he could get a modified car. Apart from Radio Otago, which employed him for a while, friends and family were the only people to give him jobs.

Life for de Geest changed when he was 21 and met a disability activist.

He moved to the North Island to work for organisations such as the Crippled Children's Society and a disability resource centre before starting the Renaissance Group with his able-bodied business partner in 2001.

In hindsight, groups such as the Crippled Children's Society and the IHC have contributed to the stigma faced by the disabled because people like him are seen as a charity, he says.

"People are giving money to those organisations so they see that that's the [extent] of their responsibility. They don't have to do anything else."

Like many of his clients, he lives in his own home, where he receives personal care and pays for home help such as cooking and cleaning.

An artificial arm helps him steer his vehicle, a modified van that sports the numberplate UNARMD.

His mobility dog picks things up off the ground for him, carries his wallet in a backpack and pulls his clothes off him at night.

De Geest holds a pen in his mouth to write and uses a computer and a telephone that have touch screens.

And he has continued to fight what he sees as injustices. Last year, he took on Wilson Parking after receiving a $45 fine for not displaying a ticket, even though he was unaccompanied at the time and could not use the pay-and-display machine.

The company told him he should have asked a passerby to get his wallet from his pocket and pay.

On another occasion, he told an able-bodied employee of the Auckland District Health Board that he should not be using a hospital mobility park, and copped an earful.

The abusive worker was surprised when he later learned that de Geest was a board member and wanted to meet him.

The straight talker has not always been so confident. When he moved north, his mother supported his decision, but some relatives wanted him to stay where he could be "looked after".

"I think they meant it in a nice way but it left me feeling quite low," he says.

"I had quite a lot of negativity about my own ability."

Once, when he was 10 or 11, he stood by the family's swimming pool and considered diving in.

Later, when his marriage was not going well, he started up his car in his garage and thought he could be "gone" by the time everyone got home.

"The problem for me is I always want to know what's going to happen tomorrow. And now I couldn't be happier. I've put all the past to rest and moved on to feeling good about who I am."

Several people have believed in him, he says, before pointing out his unique method of educating the others.

Recently, he had a snake tattooed on one foot, to go with one he already had of a mako shark.

"Snakes are misunderstood, the same as sharks and disabled people," he explains.

"People fear what they don't know."

That uneasiness means many employers are scared to take disabled people on, particularly in the South, he adds.

"I had a great upbringing. But when I got to the age of working, people were quite discriminatory down here and wouldn't give me a chance ... I'm talking 30 years ago but I've also talked to people now who are having similar problems."

"Otago people really need to wake up about this. It's a great place ... and I'm proud to be from here. But I'm not proud of the way disabled people are treated, on the whole."

Employers may have to make changes to their workplaces to accommodate those with disabilities but, in return, they get loyal employees who really want to work for them, he says.

"Believe it or not, we actually are quite intelligent. And we make really good planners because we have to plan every part of our day."

"We have the lowest incomes of any group in New Zealand and the highest unemployment rate - 70% - yet no-one really takes an interest. There is still a lot of stigma out there."


THEN

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  • It was withdrawn from sale in 1961 after being linked to a huge rise in the number of babies being born with missing or malformed limbs and serious internal problems. An estimated 10,000 were affected.
  • The Ministry of Health says the drug was introduced to New Zealand in 1960 by way of samples to medical practitioners.
  • In September 1960, it was classified as a "prescription poison", limited to sale by pharmacies and only to purchasers known to the pharmacist. A record of every sale was also required.
  • In 1961, various formulations containing thalidomide were introduced by Distillers Company Biochemicals (NZ) Ltd. These included the formulation sold under the brand name, Distaval.
  • On December 4, 1961, products containing thalidomide were withdrawn from the New Zealand market and product was recalled from pharmacies.

NOW

  • The thalidomide-containing medicine, thalidomide pharmion, is approved for use in New Zealand for the treatment of multiple myeloma (a cancer of the bone marrow) and for erythema nodosum leprosum (a skin condition that can occur with leprosy).
  • The Ministry of Health says it acknowledges the "terrible tragedy" that resulted from thalidomide being used during pregnancy and those working in health services "regret what happened".
  • It was partly this harm that prompted the strengthening of New Zealand's medicine regulations to ensure medicines meet appropriate standards of safety and effectiveness, it adds.

 

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