So where did it all begin?
Our Chief Executive Carol Boys talks us through 50 years of the Down’s Syndrome Association…
Rex Brinkworth was a teacher and psychologist whose professional interest in improving outcomes for children with Down’s syndrome had been sharpened by the birth of his fourth child, Francoise.
His daughter had Down’s syndrome and was quite a poorly baby. While some people suggested Francoise “would ‘never be more than a vegetable’” Rex was not going to let the “severe under-expectation, and…conventionally negative medical prognosis” discourage him and his wife from doing their very best for their daughter.
Rex was soon supporting other parents of children with Down’s syndrome. The positive and proactive idea that parents could make a difference to their child’s well-being was a revolutionary and powerful one.
At that time, people with Down’s syndrome were generally referred to as ‘mongols’; they were considered to be educationally sub-normal. Many people with Down’s syndrome lived in institutional settings such as long-stay mental hospitals. Parents were often encouraged to leave their children in such institutions and to forget about them. If they did take their children home, they could expect very little support in the community. Most babies and children lived at home with parents rather than in institutions.
By 1969 Rex was in touch with some 130 families. The Down’s Babies Association was set up in 1970 to formalise the work that Rex was doing and to give families from all over the country a place to come and receive assessments, information and training.
At this time, the Association was working out of a small office in Birmingham. A network of branches slowly extended across the country. These were made up of families and a few medical, education and social work professionals. Rex produced the first fact sheets for parents containing positive information and activities to help the development of children with Down’s syndrome. We still have copies in our archive at the Langdon Down Centre.
This focus on empowerment and information, for people with Down’s syndrome and their parents and carers, has been one of the core strands of the organisation’s development. Of course, our name has changed – from the Down’s Babies Association, to the Down’s Children’s Association and finally to the Down’s Syndrome Association – and as such, our information and advice has expanded accordingly.
Today we offer advice, information, support and resources about any aspect of living with Down’s syndrome including prenatal support, benefits, education, service provision, rights, health and well-being, speech, language and communication, complex and adult needs.
Campaigning on critical issues is another 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 terminology and highlighted inequalities in education, health and social care. We have challenged the stereotype that people with Down’s syndrome can’t be fully included in their communities, alongside their peers, holding down jobs, enjoying relationships, getting married and living a full life. We have funded and supported research into all aspects of Down’s syndrome.
Ensuring that people with Down’s syndrome are at the centre of our decision-making process is also now a core part of our strategy. A person with Down’s syndrome has been a member of our board of trustees since 1999. The Down2Earth group, the first of our Having a Voice® groups, met for the first time in 1997. We are also committed to amplifying the voices of people who have Down’s syndrome through all our communication channels.
Our members matter
Throughout the last fifty years our members have been a vital part of our story. They are the powerful engine driving all our work; their feedback helps us define the direction of our work and their membership fees have allowed us to continue to deliver vital support, year on year. Many of our members and supporters have gone above and beyond with their fundraising efforts. We still rely almost entirely on voluntary donations, big and small, and we are so grateful for every one of them. Our Affiliated Groups are also a vital part of our network.
So what about the next 50 years?
The DSA will continue to be the driving force for fundamental change in our society that it has been since 1970. Although we’ve come a very long way, our work will not be complete until people with Down’s syndrome are fully included into society and no longer the victims of discrimination and prejudice.