18 Nov, 09 | by BMJ Group
As the mother of a severely disabled child and a psychiatrist working with learning disabled children, I was particularly interested in this BBC documentary which highlights the enormous challenges families face in bringing up a child with disabilities.
Presented by Rosa Monckton, mother of a girl with Down’s Syndrome, the documentary shines a light on the lives that families with disabled children live. It makes uncomfortable viewing. We discover just why some carers are driven to desperation where they want to kill their children and be killed as well. There is the story of Rosa herself and her response to the discovery of a disabled daughter, her sense of horror and despair but helped by access to various services that enabled her to be a “mother” and not just a “carer.” We also learn of Cameron, a 17 year old with Asperger’s syndrome who (to me as a psychiatrist appears to also be suffering from Tourette’s Syndrome but) falls between two services (child and adult). There are experiences of other families with single mothers struggling, their non-disabled children becoming the silent victims and the inevitable fears and the lack of answers for their disabled child’s future. The common experience of families with disabled children facing similar emotional problems whatever their social class is also apparent. This doesn’t exclude David Cameron, leader of the Conservative party who appeared to be holding back his tears when recalling his son.
As a carer and a professional, I felt that the documentary strongly portrays how the lack of emotional adjustment, combined with feelings of embarrassment and guilt, can make the burden of care intolerable, plus the social isolation and lack of adequately responsive support services which could sometimes result in desperate mothers ending it all, an outcome which ought to be preventable at all costs in a caring society.
Some additional information on the way families could go about accessing resources within the currently existing legal ,social and healthcare frameworks would have enhanced the the usefulness of this film for isolated carers. Nevertheless, this is a powerfully insightful film for professionals and politicians alike.
Parijaat Vaidya is a specialist registrar in child and adolescent psychiatry at Sheffield Children’s NHS Foundation Trust.