Doctors taught how to speak to parents whose kids have Down Syndrome

The findings of a new survey by Down’s Syndrome Scotland (DS Scotland), revealed during their awareness week, has shown that inappropriate or negative language towards people with the genetic condition is still common across Scotland.

Nearly 60% of parents who took the survey and who have children with Down’s syndrome, said they have experienced offensive or inappropriate comments from members of the public, their friends or family, and 40% have witnessed negative language from professionals, including nurses, midwives, doctors, teachers and social workers. A further 40% said that they were offended by some sections of the media who unwittingly were using incorrect language - for example abbreviating terms - often because of a lack of knowledge or awareness.

The vast majority of respondents were offended by descriptions such as a ‘down’s baby’ or ‘down’s man/woman’ which puts the condition at the forefront, rather than a more appropriate term such as ‘a person with Down’s syndrome.’ The message from DS Scotland is that those with Down’s syndrome are people first, rather than being defined by their condition. ‘Person first’ language is important in making this distinction.

Other negative terms such as ‘mong’, ‘mongol’ or ‘retard’ are still too often used according to the survey, particularly by people from an older generation when this was viewed as more acceptable language. In addition, saying ‘sorry’ or showing sympathy when confronted with a baby with Down’s syndrome, can be highly offensive to parents.

The research also suggests the problem runs through all levels of society. According to many of the respondents, professionals, including health professionals, commonly use inappropriate or incorrect language when describing people with the condition, particularly during pre-natal testing or early motherhood. Describing the condition as a ‘problem’ rather than a ‘diagnosis,’ or a ‘risk’ of having a baby with Down’s syndrome rather than a ‘chance,’ were seen as unhelpful and in some cases offensive to expecting parents.

The research has been conducted as part of Down’s Syndrome Scotland’s ‘Mind Your Language’ campaign to raise awareness of negative language and its impact on people with the condition. ‘Mind Your Language’ is a month-long initiative designed to shift public opinion, including a public awareness campaign on social media and stakeholder engagement activities with the press community in Scotland.

The research findings were revealed during Down’s Syndrome Awareness Week, seven days of exciting and informative fundraising and awareness building events that take place annually to help society see past the condition.

Kerry Lindsay, Communications Manager of Down’s Syndrome Scotland said:

“While we knew that people with Down’s syndrome were frequently referred to as ‘Down’s’ rather than a person with Down’s syndrome, we were surprised that the results of the survey revealed the word ‘Mongol’ was still used so frequently in society today. We are hoping through our campaign that people from all generations of society will think twice before using these words in the future.

"Our aim is to also encourage everyone from professionals to family members to always put the person first and use people first language, to see past Down’s syndrome and see the whole person. ”

Down’s Syndrome Scotland are the only charity in Scotland focused solely on the needs of people with Down’s syndrome and their families. They provide information, support and services for people with Down’s syndrome, their families, carers and those with a professional interest.