Thalidomider and campaigner Louise Medus-Mansell passed away last week in her sleep aged 56, following complications from a kidney transplant – her second since 2001.
Louise was thrust into the public eye at a young age, when her father David spearheaded the legal fight against Distillers, the pharmaceutical company who distributed thalidomide in the UK. Marketed under the brand name Distaval, thalidomide was a greatly under-tested drug designed to combat the effects of morning sickness, but only somewhat unknown to the German manufacturers of the drug Chemie Grünenthal, it caused birth defects depending on the stage of pregnancy in which it was taken.
While he succeeded in forcing them to provide a settlement package of £26m to be distributed amongst the 370 families affected by the drug – ten times Distillers’ original offer of compensation – Louise felt estranged from her father and mum Vicki, growing up not in her family home, but in Chailey Heritage, a home in East Sussex for disabled children, at the recommendation of doctors who questioned how her parents could provide for her well-being appropriately.
While her father campaigned, Louise was visited in Chailey by a number of celebrities, including Cliff Richard and Olivia Newton-John, but later told Birmingham Live that when the photographers left, her family went with them, preventing her from bonding with them. She also told the newspaper that she was a victim of rape while living there, which staff chose to ignore, and was “experimented” on, being forced to strip while doctors examined her body and measured her limbs.
After leaving Chailey at 17, Louise’s family wanted her to go to a home for disabled adults, but she instead chose to attend the National Star Centre – a specialist college for disabled people, where she met her first husband John. Unable to go home during the holidays, she also spent time sleeping rough as she was “too proud” to tell her parents she may have needed help.
Louise’s marriage to John did not last after she discovered he was having an affair with their carer, but she found love again in Darren Mansell, a fellow thalidomider, who survives her, as well as her two children Emma and Jack, and her step-children Stacey and Natalie.
She sat on the National Advisory Council for the Thalidomide Trust, acted as a youth leader for Woodcraft, and actively lectured in schools, while campaigning to provide disabled people with better access throughout her life.
Louise will be remembered not only for her fighting spirit, but her empathy, care, and positive spirit. “Her big strength as a leader was her ability to support children and young people who experienced adversity themselves, making them feel wanted and welcoming them into the group,” said Duncan Siret of Woodcraft.
“She made friends with the children and young people, forming relationships that have endured over the years.
“Louise was an inspiration to many and all who worked and volunteered alongside her have fond memories of laughter and challenges.”Get your copy of UNITE Magazine
Image: Family Handout