their ability can be assessed realistically. Such research moves on from notions of fixed
(dis)ability, static syndromes, expert researchers and inadequate subjects, to acknowledge
how the research questions, methods, interactions during interviews, and hidden assumptions
about medical or social models of disability, all shape the data.
This small study may involve exceptionally able people, who present unrealistic
impressions of Down’s syndrome which could dangerously mislead prenatal decisions and
policies. The five people were articulate, although research through interactions and
observations with people who do not speak about their quality of life can be very informative
(Smith, 1993; Booth and Booth, 1996; Alderson and Goodey, 1998). Until far more research
is conducted which takes proper account of social contexts, generalisations cannot be formed
about the costs of unavoidable dependence, or the value and quality which people with
Down’s syndrome experience in the everyday details of their lives.
Qualitative studies and associated literature reviews cannot provide such generalisations.
They can, however, contribute the following. Reviews of the history, research, policy and
ethics of screening programmes question whether Down’s syndrome began to be screened
because this was technically possible rather than because it was the most serious condition.
The reviews reveal the lack of evidence on which fears about Down’s syndrome are
constructed, and the underlying negative rather than neutral, intellectually elitist assumptions,
which bias the relevant literature and research. Very small samples of interviewees can
include the exceptions which challenge established assumptions (Secker et al., 1995). They
can show the need for broader, more realistic evidence about the range of ability among
people with Down’s syndrome, and about links between intellectual ability, contentment and
self-esteem (the general population shows that there are no clear correlations and that life
style may be more salient than intelligence to quality of life). The interviewees highlight
tensions between the aims of screening to reduce anxiety, disability, suffering and cost, and
the outcomes of inadvertently increasing these, thereby illustrating the need to reassess cost-
benefit calculations in screening policies, and to base them on adequate evidence. This
reassessment is urgently needed as the numbers of people with Down’s syndrome who can
contribute to these debates fall through prenatal selection (Sawtell, 1996). Qualitative studies
also provide social models of interactive research methods which are useful in quantitative
research.
Qualitative interviews and observations are valid, meaning close to the reality they examine,
when they elicit authentic insights into people’s lives and explore their own meanings,
perceptions, feelings and detailed experiences, as well as possible differences in
interpretation between the interviewee and researcher (Crabtree and Miller, 1991). The
researcher tries to “step into the mind of another person, to see and experience the world as
they do themselves” (McCraken, 1988), which can raise unexpected new themes (Britten,
1995), and explore the ambiguities that closed survey questions cannot do. In reports of small
studies, there is space for interviewees’ “active voice [to be] heard in the account” (Acker et
al., 1983) in detail; they appear as people not numbers, and thus enable readers to assess
original data.
Critics of research interviews say that interviewees do not give accounts of external reality
but simply present themselves as competent, moral members of particular communities, such
as being adequate research interviewees (Murphy et al. 1998: 120). People with Down’s
syndrome who achieve this, powerfully demonstrate their social competence, thus
demonstrating an ability which cannot be faked to reflect on the value of their lives.
Everyone’s accounts and moods are partial and changing, influenced by contingent truths,
expressed with different emphases according to different contexts, and researchers have to
take account of this, while accepting that some lasting realities are discussed too. The validity
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