PARENTS'
VIEWS
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?
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)
Offensive terminology
Some parents/carers reported the continued use of outdated and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.
REFERENCES
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.
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