To mark the 50th anniversary of the withdrawal of the drug thalidomide from sale the UK in 2012, Professor Anne Borsay of Swansea University embarked on a project to collect oral testimonies from a cross-section of the thalidomide population. I was project research assistant and interviewer. An archive of this project is now available in the Library, and some of the oral testimonies can be heard on Soundcloud.
From 1957-1961 Thalidomide was licensed for the treatment of pregnant women suffering from morning sickness and sleeplessness. However, the drug had not been robustly tested and early warning signs were ignored. As a result, over 650 babies were born in the UK with thalidomide-induced impairments, ranging from extra digits to tetraphocomelia (impairments affecting the growth of all four limbs). The number of still births, ‘mercy’ killings and natural or induced abortions is unknown. The drug was finally withdrawn in December 1961 and the last thalidomide-affected baby was born in the UK the following year.
Hearing from ‘thalidomiders’
Despite the uniqueness of the thalidomide story, no previous oral history project had been attempted. We collected life stories from a sample of 18 people impaired by the drug, adopting a multiple biographies approach with a semi-structured schedule of questions focused around:
- birth stories and mother’s guilt
- family and relationships
- medical intervention
- education and career
- disability prejudices.
I interviewed the participants in their homes and, although the interviews frequently became emotional, the interviewees were overwhelmingly keen to talk and to preserve their stories; they were all very aware of the uniqueness of thalidomide and its effects.
The birth stories had many aspects in common. Due to midwifery practices common to that time, mothers weren’t initially concerned that their babies were taken away following birth. Fathers rarely attended the birth and so were as unaware as the mothers. But as the hours, and sometimes days, ticked by and, usually through a haze of heavy sedation, they still hadn’t seen their child, they began to be suspicious. I recorded tales of women being passed their baby wrapped tightly in blankets, the nurse fleeing before it was ‘unwrapped,’ of fathers asking if the limbs were likely to grow at a later date and even, following a birth in Uganda, a mother being advised to leave her baby in the jungle for the animals to eat. These stories were generally related to me with a mixture of sadness, injustice, incredulity and occasionally humour.
The issue of the mothers’ life-long feelings of guilt about taking thalidomide was, without exception, the most painful memory recounted. Every ‘thalidomider’ I interviewed wanted it on record that they did not blame their mothers for their decision to take the drug. Sarah Gaitley says:
“I do know that she carries the weight of the guilt today, still, and probably apart from everything, what affects me the most is her guilt because I do not hold her responsible whatsoever. She is as much a victim as I am and she went through hell as well. As difficult as my life has been she has gone through it every step of the way with me. And I do wish that she would absolve herself of the guilt, I really, really do. That would be my one wish.”
On the subject of the lengthy and well-reported court cases that surrounded the thalidomide story, the interviewees became animated and frequently furious. The assessment process for compensation was one that many ‘thalidomiders’ recalled. Mat Fraser says:
“the only thing I can remember is they said, ‘Do you see that cabinet behind you? …. There are some sweets in the top drawer. If you want, you can take them.’ And so I computed immediately that I wouldn’t reach, so took the chair over with me, stood on the chair, pulled opened the drawer and got the sweets. And they started writing stuff down.”
Only years later did he realise that this was an ability assessment. Had he known at the time, he said: “I would have crawled across that fucking carpet on my chin and gone, ‘I can’t reach the sweets’ and pathetically tried and failed and really made a meal of it.”
The story of thalidomide is a unique moment in history but its repercussions affect us all today – it radically altered the laws around drug testing and pharmaceutical legislation as well as those concerning medical compensation.
Tragically, my colleague on the project, Professor Anne Borsay, died in 2014. I know that she would be so pleased to see that the interviews are now available to researchers at the Wellcome Library and online.
Author: Dr Ruth Blue is Assistant Curator in the Moving Image and Sound Collection at the Wellcome Library.