Noble (1998) found a range up to only 67 but literacy levels of 40 per cent. Today, their
educational achievements and expectations are rising considerably (Alderson and Goodey,
1998), showing that prenatal prognoses are complicated by uncertainty about the severity of
each case, and the unpredictable effects of future life style.
When it is questioned whether Down’s syndrome itself entails suffering, one response is to
speak of the relatives’ suffering: “women clearly regard a baby with Down’s syndrome as an
infinitely worse outcome than losing a normal baby from a prenatal diagnostic procedure”
(Lilford, 1990). Another response is to redefine suffering “as shorthand for a whole range of
disadvantageous conditions. I do not literally mean being in pain or being in discomfort”
(Harris, 1990:172). Some philosophers assume that serious intellectual impairment is
incompatible with being able to value one’s life, or with being a person (Kuhse and Singer,
1985; Harris, 1985). Even theological ethicists also emphasise individuality instead of the
moral webs of human relationships (Strathern, 1992). Taken to extremes, the important
ethical principles of respect for autonomy and cost-effective justice can be negative rather
than neutral towards disabled people, and towards intimate interdependent relationships such
as those between mothers and babies (Mendus, 1987).
This is a brief summary of very complex, varied debates, which highlights dominant views
that appear to have greatest influence on current screening policies, and which mainly
associate cost, suffering and dependence with Down’s syndrome. For a comprehensive
literature review, see Alderson (forthcoming).
Medical and social models of disability and suffering
How realistic are these predominant data and debates about Down’s syndrome? They draw
on research mainly conducted within the medical model of disability, which attributes
people’s suffering chiefly or solely to their diagnosed disorder. In contrast, the social model
attributes morbidity mainly to disabling barriers and attitudes which unnecessarily exclude
people from mainstream society (Oliver, 1996). Some medical researchers take account of the
social model. A study of 280 babies with Down’s syndrome attributed their poor health to
lack of “necessary care” by parents and health professionals. Denying effective treatment to
children because of their shorter life expectancy, thereby contributes to reducing their life
span. The authors added that prenatal diagnosis may adversely influence “the social
acceptance of Down’s syndrome” and their sub-standard health care (Julian-Reynier et al.,
1995).
Whereas the medical model attributes each problem - cognitive and behavioural difficulties,
sensory loss - to the syndrome (see van Allen et al., 1999 quoted above), medical research
which acknowledges the social model links the problems to one another and to social
influences. Sensory loss, which follows untreated infections that may be linked to
deficiencies in diet and exercise, influences behaviour and confusion which are also greatly
affected by relationships and attitudes, as discussed by interviewees who have Down’s
syndrome later. Clinical and social conditions constantly interact, positively and negatively.
The medical and social models thus differ in their views about the origins of suffering, as
either biological/genetic, or arising socially such as through substandard life styles and health
care. The models also differ in their views on the nature of suffering. The medical model
stresses the pain and misery of physical and intellectual impairments for affected people and
for their families who share some of their suffering and restrictions. The social model is less
concerned with bodily limitations than with the emotional pain, loneliness and unfulfillment
which follow the unjust prejudices, discriminations, barriers and exclusions that
unnecessarily disable impaired people. Disability rights authors argue that disabled people
can live challenging and fulfilling lives when they have adequate support (Bailey, 1996;