To read on the Website of Intellectuel Disability:
by Sarah Rutter
In 1999 the Down’s Syndrome Association (DSA, UK) published a report on a survey of their members about discrimination against people with Down’s syndrome by medical professionals called « He’ll never join the Army » (Rutter and Seyman, 1999). It showed that a significant proportion (28%) of parents/carers of people with Down’s syndrome felt that they had encountered discrimination on the grounds of disability.
- What can we do to change the situation?
- What did the parents say about their experiences?
- Offensive terminology
- People with Down’s syndrome are only human
- Denied heart surgery
- What do parents want from their medical practitioners?
What can we do to change the situation?
Of course we are aware that not all doctors and healthcare professionals have negative attitudes to people with Down’s syndrome. Neither are we just jumping on a ‘bash the doctors’ bandwagon for the sake of it. We are, however, concerned that some people with Down’s syndrome are not receiving the treatment and monitoring they need because of some medical professionals’ attitudes. This ‘Learning about Intellectual Disabilities and Health’ website is being developed to try to change the situation.
What did the parents say about their experiences?
The DSA’s survey report « He’ll never join the Army » quoted parents/carers describing their experiences of seeing their family member with Down’s syndrome being on the receiving end of discriminatory treatment. They were upset by remarks made and negative attitudes expressed by doctors from the moment their child’s disability was suspected. Many quoted doctors’ inappropriate and unsolicited remarks, which had remained with them for years afterwards, such as « he’ll never be a brain surgeon » or « he’ll never join the Army ». Such remarks go no way towards helping parents who have just been told their child will be disabled. « People prefer to be told diagnostic results by a professional who communicates empathy, sensitivity, openness, and a positive yet realistic outlook. » (Hornby, 1994)
Some parents/carers reported the continued use of outdated and offensive terminology, such as the word ‘Mongol’, which was banned by the World Health Organisation as long ago as 1965 and from the Index Medicus in 1975. A sensitive professional would be careful to use language that does not cause offence. Read all.