Representing experiences of thalidomide

As the museum has moved into living memory, we have become even more aware of the importance of representing inclusive, meaningful and co-curated histories. As part of our development of Lea Road Infant Welfare Centre, we ensured that we consulted community groups, individuals and professionals to ensure that the stories we told reflected ‘real lives, real stories’. To mark UK Disability History Month, BCLM Researcher Nadia Awal explores how we have started to represent the history of thalidomide and how we will continue to build on the story here at the Museum.

What is thalidomide?

Thalidomide is an oral medication which was first available in Britain in 1958. It is commonly known as a drug offered to pregnant women to help with symptoms of morning sickness, but it was a widely prescribed drug. Other ailments it was used for include pneumonia, anxiety, tension, and sleeping trouble. It was produced in the United Kingdom by The Distillers Company (Biochemicals) Ltd, under brand names such as “Distaval”. The company’s advertisement claimed that “Distaval can be given with complete safety to pregnant women and nursing mothers without adverse effect on mother or child.” However, it became clear that it could harm the unborn foetus, potentially causing limb difference, sight loss, hearing loss, facial paralysis, and damage to internal organs.   

UK distributors withdrew the drug in 1961 (though it did not immediately come off the shelves). It is estimated that over 10,000 babies were affected worldwide. Today, thalidomide is still used to safely treat conditions such as cancer, leprosy, and skin lesions. Its use is tightly controlled. For example, it is not given to people who are breastfeeding, pregnant or are planning to start a family.  

Thalidomide and Lea Road Infant Welfare Centre

Our recreation of Lea Road Infant Welfare Centre (‘IWC’) is set in 1961. We decided on this date setting and IWC for several reasons, one of those being the important link to the history of thalidomide.  

This date setting means that we can represent and discuss the impact of the thalidomide scandal, as it aligns to the date the drug was withdrawn. We knew that we wanted a medical history linked to Wolverhampton because this provided a direct link to the story. The MP for Wolverhampton South was also the Minister for Health: Enoch Powell.  

Amongst other things, Powell was instrumental in the NHS’s delayed reaction to the scandal. Initially he refused to engage with families affected by thalidomide and ignored calls for a public enquiry. Despite distributors withdrawing the drug in December 1961, it was not until May 1962 that the UK Government issued a warning, meaning that many mothers continued to take the drug unaware of the risks. This makes the history of thalidomide not only an important national story, but also an important Black Country story.  

Representing thalidomide at the Museum

We knew from the outset that, to represent the history of thalidomide in a meaningful way, we could not work in isolation. To that end we set out to find members of the thalidomide community and sector professionals to work with.  

We consulted with The Thalidomide Society and the Science Museum Group, both of whom have worked extensively with Thalidomide Survivors. They helped us to understand the history, and provided advice on best practice and the terminology we should use when discussing thalidomide stories.  

We met Darren Mansell, a proud ‘Black Country mon’, West Bromwich Albion fan and Thalidomide Survivor. His memories have been recorded in an oral history interview, and added to the Museum’s collection, alongside photographs of him as a child. Darren described his childhood and what his Black Country upbringing means to him:  

“I genuinely feel from day one that [my family] wanted me to succeed…A lot of the other thalidomide parents split up, and the kids were sent away…I’m just appreciative that it was a Black Country family. I can remember my nan sitting there, she was just rubbing my fingers and saying to me one day, ‘Alright, you’ve got little arms…just make the most of it and face whatever is thrown at you’. And those words still linger with me now…I was so lucky that in my childhood I did all the normal things that kids do…being from the Black Country…I wouldn’t want to live anywhere else.” 

Darren has generously offered his time to the Museum. For example, when asked how we should represent thalidomide in the IWC, he picked one poster which he felt was crucial to the story. This poster is displayed in the IWC alongside other literature on thalidomide and replica packets of the drug. Our knowledgeable historic characters have been trained so that they can talk to visitors about the history of thalidomide.  

What’s next?

We are continuing to consult with people. For example, we recently met with the University of Wolverhampton’s pharmacy students. Speaking to the local pharmacists of the future gave us an opportunity to hear how young people of today reflect on medicine and disability in the past. Their reflections were insightful, with thoughts on both thalidomide and the changing nature of disability in society. 

On the development of treatments, pharmacy student Sean said: “The incidents regarding thalidomide, a drug that would be taken by…people and wound up having adverse effects on the babies born to pregnant women who would use it. The way that medicine has evolved has allowed a lot of people with disabilities to find life more easily accessible, I suppose. There have been several cases with people with mental health conditions finding it more challenging to go about life and there have been problematic drugs in the past that have led to further problems, while more modern drugs have made life a lot easier for them.” 

Pharmacy students Ethar and Faizah shared their thoughts on the marketing of medicines. Ethar said: “I have learned different ways about marketing the medication… it’s a lot different now, than it was for example in 1960s where they could kind of put anything they want… now there’s a lot of legal aspects to it, they can’t put just anything to advertise the medication”.   

Faizah added: “I feel like in the past it was more like marketing to promote the drug, rather than the side effects, and now it’s marketing the drug for the actual people its catered for and to ensure that it actually works well for them and not just so they use the drug.” 

All the students we spoke to felt that the world had changed in their future line of work. Pharmacies have come a long way and are looking to be more inclusive, with tailored medicines and stricter testing allowing for more specialist treatment.  

Here at the Museum, we never see a piece of research and interpretation as ‘complete’. We are aware of the need to continually reflect on what we have done, to remain vigilant to new evidence, and to make time to talk to individuals and communities who remember these histories to ensure that our representations of such histories remain inclusive, meaningful and co-curated.  

Get in touch

We would like to know more about experiences of Thalidomide Survivors, their families and medical professionals from the Black Country to inform our representations of thalidomide histories. If you would like to share your memories, please get in touch:  

• Tel: 0121 557 9643  
• Email: collections@bclm.com   
• Address: Collections Team, Black Country Living Museum, Tipton Road, Dudley, West Midlands, DY1 4SQ  

With thanks to Darren, The Thalidomide Society, the Science Museum Group and the University of Wolverhampton for their contributions.