By: Carol Boys
Once hidden from society, by the late 1960s people who have Down’s syndrome were starting to become more visible in the community – and yet they and their families still faced discrimination and prejudice on a scale that we can only imagine nowadays.
Hurtful language (regular use of the word Mongol) was just the tip of the iceberg. It’s hard to believe that a significant number of people with Down’s syndrome were still living in institutional settings and many were languishing in long stay mental hospitals with no hope for the future. Parents were still being encouraged to send their children to schools for the educationally sub-normal and the opportunity to join their peers in the local school was not a real option.
It was not until the arrival of the 1981 Education Act that things began to change but even then, it was still a fight to get the support needed to allow a child to join their local school. A segregated education was still the suggested option being put forward for most children who had Down’s syndrome until the late 1980s, when things really began to change for the better.
Tonight’s final episode in the latest series of the BBC’s Call the Midwife explored the taboos and stigma attached to the arrival of a child with Down’s syndrome in the 1960s. A family find themselves in turmoil following the shock discovery that a long-awaited and much-wanted baby has Down’s syndrome.
Dealing with feelings of rejection and deep sadness, alongside added family complications, it was the kindness and understanding of a family with lived experience of Down’s syndrome that made all the difference for baby Robert. Set in a period only a couple of years before the foundation of the Down’s Babies Association (now the Down’s Syndrome Association), it seems a world away from how Down’s syndrome is viewed today. The fact that an actor who has Down’s syndrome (Daniel Laurie’s Reggie, pictured) plays a major role in Call the Midwife is testament to just how far we have come since the late 1960s.
It was people who have Down’s syndrome themselves and their families that helped to bring about that change. Working out of a small office in Birmingham in 1970, the parent-led Down’s Babies Association began to form a network of branches across the UK. These were made up of families and a few forward thinking medical, education and social work professionals. The association produced the first fact sheets for parents containing positive information and activities to help the development of children with Down’s syndrome.
The focus on empowerment and information for people with Down’s syndrome and their parents/carers has been one of the core strands of the work of the Down’s Syndrome Association and that is still the case today. Our name has changed and our information and advice has expanded to meet the needs of a wider age group of people who have grown up with the Association.
Today we offer advice, information and resources about any aspect of living with Down’s syndrome. Campaigning on critical issues is an important focus for us. From the very start the Association has aimed to change people’s expectations and improve understanding of the condition.
We have tackled the use of outdated language and highlighted inequalities in education, health and social care. We have challenged the stereotype that people with Down’s syndrome cannot be fully included in their communities alongside their peers, holding down jobs, enjoying relationships, getting married and living a full life.
Throughout the last fifty years our members have been a vital part of our story. They are the powerful engine driving our work; their feedback helps us define the direction of the Association. We are committed to ensuring that people who have Down’s syndrome are at the centre of our decision-making process and we are committed to amplifying their voices through all of our communication channels.
Baby Robert’s story does throw into sharp perspective that it’s only in the last fifty years that society has begun to understand more about learning disability. There is no doubt that the inclusion of children with Down’s syndrome into ordinary schools has brought about huge change – greater understanding and respect. We still have a lot of work to do but we should celebrate how much has changed.
Thankfully, it seems that Baby Robert would have been one of the lucky ones. Born in 1967 into a family that would give him the love and encouragement that he needed would have made all the difference to his development. Growing up with older siblings as his role models and living in a supportive community would have given him a brilliant start in life!
Carol Boys is the Chief Executive of the Down’s Syndrome Association.