Fifty years after the thalidomide scandal, the subject of an Emmy-winning drama talks about his life and the injustice still experienced by others.
This article was originally published 18th August, 2012.
Terry Wiles turned 50 this year. Nobody expected him to live this long. But here he is, very much alive, sitting in the sparsely furnished lounge of his modern but modest Papamoa house, where he lives with his wife, Robyn, and Mel the dog. Wiles doesn’t have a paid job but describes himself as an ambassador. He loves people and he loves technology. He loves his iPad and he loves the internet. Wiles doesn’t have any arms or legs. He has one eye and two flipper-like feet. He also has a big heart, a big brain and, as you soon discover, a rather large mouth. Mum was 17 when she gave birth to Wiles in Britain in 1962. Like many other mothers in the late 1950s and early 1960s, she had been taking the drug thalidomide to relieve morning sickness. Thousands of babies in Britain and around the world were born with severe disabilities as a result of the drug, but the damage done to Wiles was at the extreme end.
The thalidomide scandal has been around as long as Wiles has. This year marks the 50th anniversary of the exposure of its horrors. Wiles received a compensation payment in the UK in 1973. Incredibly, some victims are still waiting, including 10-15 New Zealanders who have joined a class action being taken against the UK distributor, Diageo. Wiles is urging them on. “Get on with it. Do it. [The company has] a moral obligation to these people.” It seems unbelievable that justice could be delayed for half a century, but not to Wiles. “Man is a predator. Man is a devourer of other men. Man is quite good at sidestepping his responsibilities when he wants to,” he says, mixing heavy philosophy with dark humour. Wiles has been an ambassador for thalidomide victims virtually all his life. When still a child, he was the subject of a famous book by Marjorie Wallace, called On Giant’s Shoulders. A television drama of the same name won an Emmy Award in 1980. There have been numerous films, stories and documentaries over the years and a parade of visiting journalists.
HUMOUR AS A WEAPON
Wiles has found himself advocating not only for the disabled but for other marginalised groups. “When you are a minority – and I am – you have a social conscience, you have an awareness. You have to. You are naturally political,” he says. “I think I am quite angry,” he says, laughing, displaying no anger. “I have to empathise with prisoners’ rights and gay rights and women’s rights – it’s always been that way.” Humour is the biggest weapon in his arsenal. “Confrontation doesn’t work for me anyway. I’ve got no arms or legs, so I’d get smacked in the face.” He picks the target most likely to prove his point and fires his barbs under a cloak of laughter. It isn’t long before he lines up his visitor.
“It’s your fault. You media people. You still haven’t learnt. Stop saying inspirational. It pisses us off. It pisses me off,” he says. “It’s patronising. I don’t want to be inspirational. I know you mean it in a genuine way but I don’t want to be f---en inspirational. I just want to live my life and have an opinion,” he says, enjoying the wind-up. “It’s really hard when you say I am inspirational. You are putting a lot of stress on me, because then I have to be good. I don’t want to be good. I just want to have fun and have a laugh and get pissed and fall out of my wheelchair.” He warms to his theme, adopting the faux-serious voice of a gravitas-enhanced television frontman reporting from the field. “‘He is incredibly living his life despite being confined to a wheelchair,’” he mimics. “I am not confined! I am not tied in! I am not bound!” And for God’s sake don’t mention disabled athletes. “I know we can do anything. It is not what people need to know. What people need to know is how we can do the little things. That’s important. Like how do you handle drinking a cup of coffee? That’s important to me. How do you talk to someone? That’s important to me. Not whether I can win a gold medal.”
SHOCKS IN THE OUTSIDE WORLD
He never knew his biological parents. Wiles blames his dad for abandoning him, rather than his teenage mum. “I think my father was an arsehole, evidently. He didn’t want me.” He lived in a care facility in Sussex during his early childhood and it was a shock to see the outside world. “It was like another planet – it was like you going to Mars – when I first had a really conscious idea,” he says. “That was like, f--- me! Wow! These people are all walking around.” Hazel and Len Wiles adopted Wiles. He remembers telling them he would do the washing up one day soon because his arms would grow. No, he was told, they won’t grow. “Boom. It was like being told you are never going to fly. So that was pretty mind-blowing. I thought, ‘Well, I better think about what the f--- I am going to do now, hadn’t I?’”
Wiles laughs his bitter-sweet laugh. He’s full of theatrics. He whispers and mimics and teases. The British accent has endured, although he has picked up the Kiwi vernacular in the 20-plus years he’s lived here. “Later, bro,” he says to a departing friend. “Sweet.” Thalidomide children weren’t supposed to live as long as Wiles has. “Everybody thought that we would just die young, so we keep disappointing them.” There’s a serious consequence of that, too. The payouts to the British children weren’t based on this sort of lifespan and many of them weren’t well managed. “A lot of parents who had us were quite poor. There weren’t many rich parents, so they suddenly had all this money,” he says. “If your parents blow it, you are kind of screwed, really.” When the thalidomide children grew into adults, that created its own issues, including some for the parents. “Because of the shame, a lot of parents didn’t have carers. So our parents were our caregivers, and that’s a situation that got out of control, because the parents couldn’t let go. So you are like a permanent child. “What you found was all these kids turning 18 and you had all these civil wars going on in houses, because the kids are saying, ‘Oi, I want to go and have sex’, and Mum is saying, ‘But you’re only 12.’ I am not 12!” So, how much money was paid out? “How do you price my arms and legs?” he asks, rendering the question redundant and then obscene. “I didn’t ask to be here.”
ALIENATING THE ABLE-BODIED
Wiles met Robyn in 1986 at a conference for disabled children. She is an able-bodied woman who left her husband to be with Wiles. There was huge opposition to the marriage from family and friends. “A lot of my friends disappeared when we got together,” Wiles says. Ultimately, he lost his adopted parents, too: they returned to Britain a few years after the wedding was held in New Zealand. Wiles says the union of a severely disabled man and an able-bodied woman alienated people. Well, it alienated able-bodied people, anyway. “I have stretched beyond who I am. I am not just a one-dimensional person. I am not just a person in a wheelchair. I’m in a relationship. I am in your territory now and that scares you a lot.” Robyn joins us now and then in the lounge to listen to us talk – she wafts in and out of the conversation. Mel the dog is unmoved by it all and has prime position on the couch. Robyn has made tea. Then the photographer arrives and she makes coffee. Oh, and that’s the other thing. Wiles is gay. Robyn is cool with it. Wiles’s parents? Not so much. “That was really, really hard for me, but I think that is the same for a lot of disabled people. We are not supposed to have sex. It’s not normal,” he says, exaggerating for effect. “People just don’t want to know. It scares people. It frightens people.”
Being in a minority – several of them in fact – gives Wiles a good sense of how people perceive things. He says there is a hierarchy of how disabled people are seen. Paraplegics are at the top, he says with a hint of wickedness. Then the blind and the deaf. Thalidomiders – he hates the word – are at the bottom. “If you are para, you are just a person sitting down, right? If you are blind, you still look normal.” Wiles certainly doesn’t look normal. No use pretending about that. You shake his foot when you meet him. It’s a confronting sight and he knows that. “We are mirrors and people think, ‘That could happen to me.’” He hopes people will see beyond that to who he actually is. “When I do talks, I often say at the start, ‘You can’t see me at the moment. All you see is the wheelchair – that is all you see at the moment, but as I talk you see me.” And he’s right. You do.
THE LANGUAGE OF A DIPLOMAT
Wiles has spent a lifetime trying to get people to see him and other disabled people. “I am an ambassador for who I am. I have to be. I am a diplomat.” Yes, although the language is sometimes more drunken sailor than special envoy. “I was sitting in a pub once in Putaruru. Just having a drink. And this guy walks up and just sits down and starts talking to us, which I thought was pretty cool. And he says, ‘So, how do you have sex?’ And I said, ‘Probably better than you, dude!’” If you walked up to most people and asked that, you get punched out, he says. “But people think nothing of it. Where is your self-awareness, dude? Where is your head at?” His condition is mostly unrecognised in New Zealand because so few were born with it here. “Some people are completely gobsmacked and say, ‘Were you in an accident?’ I say, ‘Yeah, I was in Vietnam.’” He shrieks with laughter. Robyn laughs, too, from across the room. “I was Special Ops. It was a tough mission. Got hit by a water buffalo. They say: ‘Really?’ I say: ‘No, not really, I am full of shit.’ That’s always fun.” He slides down from his wheelchair and grabs his tea, which must be nearly cold given the length of time we’ve been talking. He clasps the cup in his teeth, tilts his head back and gulps it down. Wiles’s guest takes a drink, too, and laughs with him. But it sounds forced, like he is trying a little too hard to be comfortable. The tea has almost lost its warmth.
So, what’s life like? Day to day. No arms. No legs. One eye. “It can be pretty isolating. I can’t get a job. I am trained as a counsellor, but I can’t get a job because people don’t see past the toileting part and that is really frustrating and annoying because I would love to work with kids and I like people,” Wiles says matter of factly. “I have often been quite lonely. I don’t expect people to drop their lives and come running around after me, but I think we should slow down just a bit and just chill.” Technology has changed his life. His inventive father made little cars for Wiles based on a forklift, which allowed him to whiz around and adjust his height. Nowadays, the internet has opened up the world to him. “Yeah, it has, but you can’t hug a computer.” He is willing the inventors and scientists to keep going, holding out hope for a time when stem cell research allows him to grow limbs.
“Technology is fantastic. I love it. I can’t wait for implants. That would be awesome. Growing arms and legs. I’d be the first one in line. Hell, yeah. Absolutely,” he enthuses. “People say, ‘Don’t you want to be the way you are?’ F---no. I want to run and thump you. It’d be great. It’d be cool.” He’s joking, of course. Wiles doesn’t really want to thump anyone, not even the dreaded journalist. He does get frustrated, though, when the media talks about thalidomiders, as though that unites them as people and separates them from the able-bodied. “Okay, I am disabled. So what? That’s okay. But you are not my enemy; you are not the opposition. Sometimes you behave like the opposition and you need a slap to the side of the head, but mostly people are not your enemy. You are someone I don’t know, maybe. That’s cool, so maybe I should get to know you. “You are able-bodied. I am disabled. So, we’re different. I know that. Every day I know that. You don’t have to tell me that. But why can’t I be your friend?”
A dark matter
Thalidomide is still used today despite its terrible history.
Thalidomide has a dark history. It was developed by German manufacturer Grünenthal and launched in 1957, initially as a painkiller and tranquilliser, then as a remedy for morning sickness. Several experts who have researched the drug’s history, including Martin Johnson, the director of the UK’s Thalidomide Trust, say there is at least circumstantial evidence to say the drug was developed in prison camps by the Nazis. Professor Ray Stokes of Glasgow University has also pointed out that a Nazi Party member, Heinrich Mückter, is one of the scientists with his name on the drug’s patent. Grünenthal was in the news again recently after the discovery of documents that appear to show the company had known and covered up warnings that its product could harm unborn babies. While the drug was still being marketed between 1959 and 1961, German doctors were warning it was causing birth defects.
An excerpt from one file, published in the Sydney Morning Herald, says eight of Grünenthal’s employees had deformed children between 1959 and 1961. The drug was taken off the market in 1961 and compensation was paid to British victims in the early 1970s. But in other countries progress has been slow. In 2010, 45 New Zealanders and Australians reached a settlement with thalidomide’s UK distributor, Diageo, in a pro bono case brought by Australian law firm Slater & Gordon and Gordon Legal. But others still have to prove their case. Last month, an Australian thalidomide victim, Lynette Rowe, got a multimillion-dollar settlement with Diageo and this has opened the door for other victims. About a dozen New Zealanders have joined a class action of 120 or so Australians still seeking compensation. Lawyer Michael Magazanik is handling the case and has travelled to New Zealand to
interview witnesses and survivors. Grünenthal is refusing to be part of the settlement.
Thalidomide is now making something of a comeback. Now called Thalomid, it contains what are known as immuno-modulating agents that act on cells in the immune system. It is being used in New Zealand to treat bone marrow cancer for patients over 65 and those who cannot receive high doses of chemotherapy. It is also used to help treat skin symptoms associated with leprosy. A New Zealand Consumer Medicine Information leaflet says even a single dose of this very powerful drug can cause severe defects when taken during pregnancy.
He may have no arms and short legs but there’s not much that Barry de Geest hasn’t done.
Barry de Geest is perhaps the best known of New Zealand’s thalidomide victims. But victim is probably not the right way to describe him. De Geest grew up in Oamaru and, despite having no arms and short legs, went to a regular school. He credits mainstreaming with exposing him to opportunities he might not otherwise have had. In high school he was a gifted rower and his Oamaru Rowing Club team won a New Zealand title. He left home at 18 to study at the University of Otago and he’s been fiercely independent ever since. There’s not much he hasn’t done. He’s been a single dad, a rifle marksman and a business owner. He drives a custom-built van with a steering wheel that turns as he leans – a gizmo he helped design. He is the co-owner of Renaissance Group, which helps disabled people in Auckland get more out of their lives. Renaissance is now a significant business, with more than 90 staff. He is also co-owner of One2One, a home-care group, and he’s just launched a range of wheelchairs under a new business label, Unarmed Enterprises. He’s a regular public speaker, media commentator and advocate for the rights of disabled people.
Now 51, de Geest got a compensation payment of just $30,000 when he was 17. That was topped up in a 2010 settlement with thalidomide distributor Diageo. He points out that thalidomide victims of his age often missed out because they were born before ACC came into existence in 1974. It is “sickening”, he says, that thalidomide manufacturer Grünenthal is resisting contributing to settlements. The pharmaceutical giant has made billions in profits and has a moral duty to act, he says. “They thought, ‘If we hold out long enough, they will all die.’”