This article considers the views of parents on disability and discrimination.
Sarah Rutter (UK)
In 1999 The Down's Syndrome Association www.downs-syndrome.org.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?
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Some parents/carers reported the continued use of outdated and offensive terminology, such as the word 'Mongol', which was banned by the World Health Organisation as long ago as 1965 and from the Index Medicus in 1975.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.
People with Down's syndrome are only human
Perhaps more serious, at least from the point of view of the health of the person with Down's syndrome, were reported instances where doctors had assumed that every ailment was "because of the Down's syndrome". Parents/carers want to know that they can expect the same care and attention to be given to their family member with Down's syndrome and any other person would be offered. The consequences of not looking beyond the syndrome and at the individual can be undetected serious ill health. More people with Down's syndrome die of undiagnosed diabetes, than any other single cause. People with Down's syndrome can have all the illnesses that any other human being can have.
Denied heart surgery
One of the most disturbing findings of the DSA survey was that children were being denied heart surgery purely on the grounds of their disability. Some doctors were not at all ashamed to tell parents that they would rather spend the money on a child without disabilities than on someone who was a drain on the public purse. A few doctors even went so far as to suggest that if a child died as a result of their failure to operate, then it would allow the parents to 'get on with their lives'. Parents/carers want healthcare professionals to recognise that whether or not their child has a disability, he/she is a valued and much-loved member of the family.
What do parents want from their medical practitioners?
Parents who have a child with a disability want him/her to be shown the same respect and care as any other child. They want the same access to healthcare for their child as any other member of the community. They also want to be listened to by healthcare professionals.
Hornby, G (1994), Counselling in Child Disability, Chapman & Hall, London.
Rutter, S & Seyman, S (1999), "He'll never join the Army", Down's Syndrome Association, London.
This article was first published on the site in 2002.