Oliver, 1996; Asch, 1999). Prenatal medical prevention is the logical solution to non-treatable
genetic/biological causes of suffering, whereas social/emotional suffering is resolved and
prevented by changes in social attitudes and structures towards making societies more
inclusive, reforms which are undermined by national prenatal screening programmes.
Shakespeare (1999) questions whether the social model of disability is too dismissive of
bodily problems, just as the medical model too readily ignores social conditions, and he calls
for more research with disabled people about their diverse experiences. These points are
perhaps still more relevant to people with learning difficulties, whose views are so rarely
researched and who have no thinking aid that is equivalent to the mobility aids which liberate
physically disabled people.
Research methods in medical and social models of disability
Qualitative and quantitative methods overlap, and are useful in both medical and social
models. Yet as this section reviews, they can reflect and reinforce the medical or the social
model of disability. Psycho-medical assessments of quality of life tend to use questionnaires
with closed questions administered in a rather impersonal standard manner, which can
confuse some people and talk down to others. High numbers of respondents count for more
than spending time on gaining detailed responses from fewer people. When they are
discouraged from speaking beyond the main point, people may nervously try to give brief
“correct” answers, and then seem dull and lacking in individuality. Questions like Ahow does
your problem affect your life?@ can exaggerate the effect of the syndrome by excluding other
strong influences like income or transport services. Terms such as Apatient, disease,
suffering@ turn Down=s into an illness. Disabled people who are used to being questioned in
this way tend to be cautious and distanced, warn Gillman et al. (1997), who analyse how
these approaches objectify people, measuring them against assumed norms, and contributing
to negative records which silence and oppress them. Problems are recorded far more than
successes and abilities. “Challenging behaviour” may mean not conforming to rigid routines,
or even not being passive (Gillman et al., 1997).
The contrasting social research methods used for the exploratory research are described
below, as used before, during and after the interviews, followed by a report of the main
findings and then a discussion about the validity, reliability and policy implications of the
study.
Before the interviews
The project was approved by the Institute of Education ethics committee. Forty adults who
had a condition which is tested for prenatally were contacted, mainly in south-east England;
five had Down’s syndrome. The other conditions were cystic fibrosis, thalassaemia, sickle
cell and spina bifida. Information leaflets were sent through informal networks and self-help
organisations with reply envelopes asking people to opt in to the research. Contacts were not
made through health or social services, in order to emphasise confidentiality, and to
encourage a person-to-person approach rather than a practitioner-patient/client one between
interviewer and interviewee. The informal contacts and respectful opt in methods made it
harder to contact interviewees, and people with Down’s syndrome were the hardest to find,
perhaps partly because carers assumed that the interviews would be too complicated or
distressing for them, and because many people with Down’s live secluded lives. To enable
everyone to give informed consent or refusal, the leaflet explained that the interview topics
were:
about your views about your daily life, your family and friends, your school or