Amazing, incredible, inspiring…overused words but I found myself unable to avoid using them when describing my meeting with the pioneering psychologist Janet Carr, who has just finished the world’s longest study (50 years) of people with Down’s syndrome. Carr’s life’s work has been a commitment to changing attitudes about learning disability, and in particular Down’s syndrome.
As I explain in an interview published in The Guardian today, Carr’s longitudinal study began with 54 babies born in the year to November 1964 and living with their families in a part of south-east England. Carr’s aim was to establish the children’s educational needs using intelligence tests such as pattern-matching. The research, which began when the babies were six weeks old, was conceived by the Medical Research Council psychiatric genetics research unit at London’s Maudsley Hospital. It was initially intended to last just 10 months but the young researcher wanted to look longer term and explore family interactions.
“I thought, as well as looking at how the little people are, I’d like to look at how it affected their families. It was widely accepted that having a baby with a disability meant that it would be a disaster, that families would break up. That’s what I expected to find,” she recalls. In fact Carr discovered that, while the babies’ development was slower than their non-disabled peers, families coped well as the children grew, with youngsters bonding and developing good relationships with their brothers and sisters.
You can read the rest of my interview with Janet Carr here.