Whose life is it anyway?

If the media accurately reflects public attitudes, there is
apparently little concern about the possible impact of the new
genetic sciences on the shape of humankind. The public may have
qualms about some developments, such as human cloning, but the
prospect of using the new knowledge to eradicate inherited illness
and impairment is apparently welcomed without qualification.

Some disability organisations, however, are expressing deep concern
about where the science is leading us.¹ If avoiding the
birth of children who are different is so important, what does that
say about society’s attitude to disabled people? Will parents who
have a disabled child be seen as stubborn and irresponsible because
– it might be presumed – they ignored the prenatal diagnosis? And
just supposing that disability could be eradicated, would it really
make the world a better place?

A research project by Values Into Action aimed to find out how
widely such concerns are recognised and shared.²
Eighteen established groups were recruited, providing a total of
176 participants. These groups included local organisations of
parents of disabled people; staff from service agencies; and
“uninvolved” community groups including college students and a
Round Table group.

Each group was asked to devote some time of a meeting to the topic,
starting with individually recorded responses to 10 statements (see
below). After informal discussion, the participants again recorded
responses to the statements, providing an indication of whether
their views had changed. The same issues were also discussed with
two People First groups but, because the topic could be
distressing, the formal research method was not used.

Responses to the statements showed that, in the broadest terms,
prevention of impairments won strong support. Three-quarters of the
participants (79 per cent) agreed with the statement welcoming
scientific progress towards the elimination of inherited
diseases.

But other statements indicated a pattern of attitudes that was far
more complex. Two-thirds (64 per cent) of participants supported
the statement that our society is enriched by disabled people, and
the same proportion rejected the assertion that abortion is the
responsible course of action when the child would have severe
learning difficulties. Only 14 per cent felt that it would be
better if people with severe learning difficulties had never been
born.

Discussions by the participant groups indicated that these
complexities and contradictions are caused by two factors.

Firstly, there is the different but linked issue of abortion. While
people may feel able to support the abstract notion of “the
elimination of inherited impairment”, even those who are not
“pro-life” may feel less comfortable when elimination means
abortion.

Secondly, the labels used in the statements forced people to fall
back on their own stereotypes. “Disabled people” may call up the
image of an intellectually able person in a wheelchair: the
astrophysicist Stephen Hawking was frequently cited. In contrast,
for some participants the term “severe learning difficulties”
triggered negative images of dependency and incapacity. The
important lesson is not about research design, but about the need
for public discussions about these issues in the real-life context,
and preferably in the company, of disabled people.

The pattern of responses to the statements showed few clear
differences between the categories of respondent. In discussion,
many service workers were very alert to the issues, but this did
not translate into a distinct position. Some parents – notably
those who are active advocates – were equally articulate and
passionate in their support of the contributions of people with
learning difficulties. As one father said: “I’ve changed from being
an ‘If onlyÉ’ parent to a ‘Thank God’ parent.”

On the other hand, the “rank and file” members of the parents’
groups tended to be less sentimental, and to view professional talk
about the contributions of people with learning difficulties as
akin to political correctness. As one mother said, “The
professional people should try having a disabled child for a
weekend.”

There was very little difference in the pattern of response to the
statements before and after discussion. As might be expected,
people tended quickly to fit their viewpoint on this topic into
their wider belief system. One business executive said parents who
knowingly had a disabled child should be denied access to health,
social care and schooling for the child.

Equally, and at the other end of the spectrum, many participants
drew on their own experience of disadvantage or exclusion to
identify with disabled people. This was particularly evident among
a group of service staff that included a high proportion of black
people. A group of “uninvolved” teenagers clearly shifted, in the
course of their discussion, from a position driven by pity to one
based on human rights – and thus became the only group that showed
a distinct shift in its responses to the statements.

Some people could not see any cause for concern. But they were very
few. Across all the groups and participant categories, the
discussions were animated, frank and often emotional. Although the
participants might not have been a representative sample, their
responses suggest that there are widespread misgivings about the
drive to eradicate genetically caused impairments.

However, the research also highlighted how difficult it will be to
move from a sense of misgiving to a position of opposition. At
every turn, views came with a qualification.

So, for instance, the belief that disabled people contribute to
society may come with an exemption where people with profound
impairments are concerned. Likewise, abortion on grounds of
difference may be held to be wrong, but not in the case of very
severe or multiple impairments.

The tradition of tolerance in our society is so strong that even
people who have an absolute moral objection to abortion might not
wish to deny the choice to other people. And those people who most
loudly defend the rights of disabled people are likely to base
their position on a broader framework of human rights – a framework
that will make them equally vehement in support of “a woman’s right
to choose”.

The disability lobby has yet to offer any clear position on the new
genetics. But the genetics industry is charging ahead. Values Into
Action will be holding a seminar later this summer, with the aim to
develop a coherent and practical response in policy. Mere
expressions of concern may be worthy, but they will not make a
difference.

Steve Dowson is an independent consultant

References

¹ C Kenny, “Genetics
proposals ignore views of disabled people, say pressure groups”,
Community Care, 3 July 2003

² S Dowson, As Nature
Intended? Attitudes to the New Genetics and People with Learning
Difficulties (discussion paper), VIA, 2003; see
website
www.viauk.org 

The statements   

The participants in the Values Into Action study were asked to
respond before and after discussion – the latter to see if their
views had changed – to the following statements: 

• In my view, abortion is always wrong, whatever the
  circumstances. 
• I welcome scientific progress towards the elimination of
  inherited diseases. 
• Our society is enriched by the presence of disabled
  people. 
• Parents who are told that their unborn child will be severely
  disabled should have the right to choose abortion. 
• When it is discovered early in pregnancy that a child will be
  born with severe learning difficulties, abortion is the responsible
  course of action. 
• The contributions that people with learning difficulties bring
  to our community outweigh the costs and problems they also
  present. 
• Prevention of physical disabilities is more important than the
  prevention of learning disabilities. 
• The money being spent on research to prevent the birth of
  disabled people should be used instead to provide better education,
  health, and social services for disabled people. 
• It would be better if people with severe learning difficulties
  had never been born. 
• The excitement about developments in genetic research is a way
  of saying to disabled people that society does not want them.