Last Thursday there was a BBC documentary about thalidomide, the drug used to suppress sickness in pregnant women which was responsible for serious birth defects in the children of the women who took it. The programme focussed on David Mason, a shareholder in the company which manufactured thalidomide in the UK and whose daughter Louise was affected (born with no arms or legs). Mason vetoed a confidential £3m settlement and proceeded to use the media to pressure Distillers to accept a much bigger settlement, ultimately successfully. However, a brief search for his name reveals less heroic details about Mason that the BBC chose to gloss over: that this wealthy man consigned Louise to an institution as a child, where she remained until age 17. (The Telegraph’s review notes that the programme favoured the voices of journalists and of Mason over those of survivors, and only briefly mentions the current legal action against Grunenthal, the German developer of thalidomide.)
It’s fairly well known that in the 1960s it was quite common for children who were disabled from birth to be left in institutions, and for some doctors to tell parents to “leave it with us and go away and have another”, or words to that effect. There was much less (if any) support for raising disabled children at home and the only education available was at special boarding schools. Parents faced a fight, as did the children, but the decision was left up to the parents; they were not forced to give up their disabled children. It may be a huge sacrifice to be a full-time carer (although if the child is purely physically disabled, it is much less so than when they are, say, autistic with severe and violent challenging behaviour), it’s a greater sacrifice to spend years in an institution so as to avoid disrupting others’ lives or careers. Many of these institutions were cesspits of abuse and neglect. At Chailey, the institution in Sussex that housed many thalidomide victims, the children were addressed by numbers by staff, not by their names, and most of the thalidomide victims were forced to wear heavy and cumbersome prosthetics. If you were going to protect your child from all this, it helped if you were rich and well-connected — someone who could get substantial articles published about his plight in the Daily Mail and the Sunday Times, and get Rupert Murdoch to help him with a publicity campaign, is one useful definition of this.
The programme featured interviews with a number of thalidomide survivors (now in their 50s) and mentioned that some parents used their ingenuity to make their homes accessible to their disabled children. Yet it only briefly mentioned that Louise Mason (now Medus-Mansell) was in an institution, and got bullied there during the dispute over the confidential deal, not that she spent her entire childhood there, as a brief search for Mason’s name will reveal (see this interview with Louise Medus-Mansell from 2009, for example). It did not mention that she was raped there as a teenager (by another young person, not a member of staff). It allowed Mason to say that he withdrew into himself and became depressed after the final settlement was reached; it did not say that he all but disappeared from his daughter’s life, and she was often the only child there who was not visited. It also did not mention that after leaving Chailey, Louise decided to go to the Star College while her father wanted her to go into a “home” for disabled adults, and that she had to sleep rough during the holidays.
The programme was too focussed on a flawed “hero” who ran a campaign that benefited others although it put back by years the time that benefit was delivered. Meanwhile, some of the parents he was fighting were actually caring for their disabled children full-time and could have done with the compensation while their children were children. It’s hard to escape the conclusion that this was a variant of the “white saviour” phenomenon in film, where the only white man in sight is the hero and the natives are either villains or victims. Race wasn’t the issue here, but class, wealth and connections were: Mason was obviously someone the media could contact very easily, and was an affable individual with a normal appearance, no speech impediment and well-developed media skills who the reporters could deal with easily. As plenty of people at the BBC (like the rest of the British media) are public school products, judging a parent who de-parented his or her child by dumping them in an institution would be like judging their own, but there’s really no excuse for doing that to your child when you’ve got money. It goes to show why many adult disabled activists distrust high-profile parent activists: they tend to support and justify each other and gloss over their failures, even when they withhold care and even when they kill their kids.
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