‘You cannot put a price on not having legs’

Kim Fenton in her east Belfast home
Kim Fenton in her east Belfast home

In 1994 Kim Fenton, Ulster’s youngest thalidomide survivor and irrepressible campaigner for victims of the scandal, went on hunger strike.

The former DUP councillor and mayor of Castlereagh, along with other thalidomiders, took the drastic action in order to pressurise Distillers, the UK distributors of the drug thalidomide, into increasing the compensation for the suffering they had endured (and would continue to endure) throughout their lives.

Ultimately they would win their case, but it took many years, and those victims are still fighting - this time for a new compensation package from Germany, where the drug was developed by the pharmaceutical company Grünenthal

Sitting on the couch of her pristine east Belfast home, Kim looks much younger than her 54 years, but her health has deteriorated, with muscle and never damage causing her daily struggles.

‘‘All my fingertips are numb, my shoulder has disintegrated, it needs reconstructive surgery, but because of the complications with my bones they can’t operate.’’

One of her hips is out of its socket by three inches, which causes her ‘‘a great deal of pain 24/7’’ and she can no longer lift her arms.

But not one to wallow in self-pity, she says:’’There’s nothing you can do about it, so you just have to get on with it.

‘‘Like everybody else I have really down days, a couple of times a week I’d be in such extreme pain I can’t even lift my head. I have had headaches every single day of my life from 1994. I knew they weren’t migraines, it was nerve damage in my head. That groggy feeling all day long is horrible, but there’s nothing I can do about it.’’

The thalidomide scandal was brought to the attention of a younger generation, who may never have heard of it, earlier this year in the BBC drama Call the Midwife.

‘‘What a lot of people didn’t realise until that programme was that so many of us were murdered or euthanised,’’ says Kim, who is one of 18 thalidomiders in Northern Ireland.

‘‘In the TV show a little baby, born without arms or legs, was put in a pail of water and sat in a window in the middle of winter to die naturally from exposure.’’

She adds: ‘‘Nobody realised that that had all gone on.’’

Kim recounts what can only be described as an unthinkable horror story about her friend who, like herself, was born with a range of limb deformities as a result of her mother taking the notorious drug thalidomide during pregnancy.

‘‘When my friend was born, she was left in a pail of water by an open window to die naturally until a midwife took pity on her and saved her.’’

It seems grotesque and unreal, and yet so-called ‘mercy-killings’ of deformed thalidomide babies was widespread during the late Fifties and early Sixties, with parents often compliant in the practice.

‘‘We had heard the horror stories, our parents told us,’’ says Kim, although she is not sure if thalidomide babies were euthanised in Northern Ireland.

‘‘I don’t know. We will truly never know,’’ she says, adding, ‘‘nobody had ever seen anything like thalidomide; when you looked at a baby without any arms or legs or maybe it’s eye sockets or genitals missing, or completely deformed, I can understand the shock and the state of mind of a doctor thinking it’s more merciful to put this child out of its misery. Back then they wouldn’t have understood how many of us would grow and would be achievers and would have as normal a life as possible. But there was massive euthanasia. It was just murder.’’

Kim believes Call the Midwife did thalidomiders a ‘‘huge favour’’.

‘‘It was so fantastically done and it reminded people what happened back in the day and also educated those who were too young to know our story.’’

But the thalidomide scandal is not something set in aspic in the past, or merely a good television storyline -the dark shadow of this pharmaceutical outrage is still very much with us, and Kim is living proof.

Thalidomide was originally devised in 1957 by Grünenthal as a risk-free sedative designed to combat morning sickness in pregnant women. It was first licensed in the UK in 1958 by the drinks company Distillers, under the brand name Distaval.

Despite anecdotal evidence from 1959 that suggested a surge in rare birth defects, the heavily marketed but insufficiently tested drug remained on sale in 46 countries.

Altogether 180 million tablets were sold until it was withdrawn in the winter of 1961, after irrefutable evidence linking its use to a dramatic global spike in the birth of deformed babies.

It is estimated the thalidomide scandal may have led to 10,000 miscarriages, stillbirths and infant deaths in Britain. Worldwide it is believed the drug maimed an estimated 20,000 babies - they were born without legs or arms or with foreshortened flipper-like limbs, some were born deaf and blind; some with curved spines, or with heart and brain damage - and killed 80,000. War apart, it remains the greatest man-made global disaster.

Adding to the dark shadow over Grünenthal, it is increasingly clear that, in the immediate postwar years, a rogues’ gallery of wanted and convicted Nazis, mass murderers who had practiced their science in notorious death camps, ended up working at Grünenthal, some of them directly involved in the development of thalidomide.

What they had to offer was knowledge and skills developed in experiments that no civilized society would ever condone. It was in this company of men, indifferent to suffering and believers in a wretched philosophy that life is cheap, that thalidomide was developed and produced.

Little did Kim’s mother Agnes know the damage taking one of the tablets would do when she given it in the Royal Victoria Hospital back in 1961 to help her sleep.

Agnes was in hospital being treated for a severe urinary infection - at the time she did not know she was expecting.

‘‘Back in those days there was a matron on the wards,’’ says Kim. ‘‘One of the nurses said to my mother ‘if we put it in your notes again that you haven’t slept for a third night, we’re going to get in trouble with matron.’’

So Agnes was given the drug thalidomide to help her sleep.

Nine months later Kim was born with two short arms, her hands were deformed with four fingers on each and no thumbs, she had shortened legs and her feet were turned backwards.

It was a massive shock for her family.

The youngest of seven children, Kim says: ‘‘When my mum and dad started to explain to my brothers and sisters that their wee baby sister was coming home from hospital, but she didn’t have any legs, my eldest sibling, my brother who was eight at the time, just literally spun around, his jaw dropped opened and he just stared at my mum with tears in his eyes. He has suffered from a stammer from that day.’’

Kim adds: ‘‘So many parents committed suicide because they couldn’t cope with the guilt, I suppose. A lot of them became alcoholics and a lot of marriages broke up - there were so many different ripples of it.’’

Despite her disabilities, Kim was determined not to dwell on the negatives, but to lead a rich and fulfilling life.

‘‘A very long time ago I just accepted who I was and accepted that nobody was going to come and wave a magic wand and grow me a pair of legs or fix what was wrong with me. You just have to get on with it. There’s no point sitting dwelling on it and feeling sorry for yourself and thinking ‘poor me’.’’

‘‘I never felt different. I never looked in the mirror and thought ‘I’m disabled’. I just was me.’’

When she’s out and about Kim uses a wheelchair, but indoors uses her arms as legs, crawling around on all fours.

Getting dressed can be a challenge.

‘‘I try to stick to things without zips or buttons, because I can’t do buttons or zips at all anymore. So, normally it’s just things that go over my head and shorts.’’

On a ‘‘good day’’ she’ll do ‘‘bits and pieces’’ of cleaning, but she does have assistants and help,

Kim attended mainstream schools and has had a colourful career as a semi-professional cabaret singer, a typist/receptionist, a politician and even Mayor of Castlereagh.

Thankfully she doesn’t remember being bullied at school.

‘‘Never once was I picked on, but that could have been a lot to do with my six older brothers and sisters,’’ she laughs.

‘‘Nobody was ever unkind or nasty or hateful. I know today is a different kind of society, but back then, nothing. I didn’t have any problems whatsoever going through school. I was ‘just Kim’.’’

She was DUP councillor for eight years and enjoyed the experience, but adds ‘‘it wasn’t for me.’’

‘‘I feel I did a good bit of work in helping to change attitudes and it gave inspiration to people that just because you are in a wheelchair doesn’t mean you can’t achieve things. But I was campaigning long before I became a councillor. ‘‘

She met her first husband when she was 17 and had three sons, who are now all in their thirties.

‘‘My kids have never treated me any differently, which can sometimes be a pain because you sorta think any chance of giving me a hand here,’’ she laughs, ‘‘and my grandchildren are the same - I’m just normal to them.’’

Kim Fenton is a fighter and is determined to fight on for justice.

‘‘I think it (thalidomide) has made me very strong and very determined and very stubborn. With campaigns, I get into a mindset and I go full force. But I can’t just credit that to being a thalidomider, it’s a lot to do with my family and my personality.’’