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Language
Perhaps the biggest
issue in Deaf Studies is the use of sign language. This cuts
across almost every part of the research and is an aspect which
usually ignored by hearing researchers. Although it is a
practical consideration in terms of the competence of the
investigators in fluency in sign language, it is also an ethical
issue from both the point of view of the research community and
of the participant group.
Research carried out
with Deaf people where the data collected is in language form ie
interviews, focus groups, then the data should be collected by
Deaf researchers or by hearing bilinguals – ie with demonstrably
extensive fluency in sign language. Where the researcher does
not have this level of fluency, then ethical issues arise.
(a)
in terms of the integrity of
the data
Where an interpreter is used or where the researcher has poor
beginner or intermediate levels of sign language competence,
then it is extremely unlikely that the data elicited will be of
sufficient quality as to be representative of the points of view
which are valid within the Deaf community. The results are then
likely to distort the position of Deaf people and are invalid
from a research point of view.
(b)
in terms of the position of
the Deaf participants
When faced with a hearing
researcher or even a researcher who has a hearing loss the Deaf
participant makes a judgement about cultural compatibility and
language competence. On the basis of this, the person will
decide on the extent of disclosure he/she can enter into. Where
the research is of some importance – socially and emotionally,
this may produce severe frustration. In this case, the effect
may be felt by the participant, and by other Deaf people
(because of discussions between Deaf people) and will be felt by
the next research project, where Deaf people may refuse to
participate as the ‘research’ has been devalued.
Except in special
circumstances of the research itself, research which involves
interviewing Deaf people should be carried out by Deaf BSL users
only.
Use of Interpreters
In certain
circumstances, where contact with Deaf people is necessary and
the research has limited signing skills, then interpreters may
be called upon. In circumstances where instructions are to be
given on say, use of equipment, or completion of a test, this
may be acceptable.
However, it should be
noted that it is inadvisable to use interpreters in the case of
Deaf school children.
It is not acceptable to
use an interpreter for some children and not for others – eg to
make comparisons between Deaf children and hard-of-hearing
children.
Confidentiality
Research work in small
communities always has issues of confidentiality. Sometimes,
the researcher is known to the participant. Although the person
may live in a small community and their contribution is not
identifiable to the hearing majority, it may still be possible
for another Deaf community person to determine who that person
is, from a transcript or quote. In these cases, it is essential
that informed consent is obtained and that data is anonymised.
(It is very important that you read these papers).
All data is also covered
by the data protection act and researchers should be aware of
the rules (see the Information Commissioner’s web site) and also
should complete the data protection self assessment form.
Use of Video
By its nature, sign
language and Deaf community research has been stimulated by the
easy availability of video recorders.
It is not ethically
acceptable to make surreptitious recordings of Deaf people for
language analysis.
This means that all
research involving video recording needs to explain to the
participant exactly what use is to be made of the video
recordings and who will be able to view them and for how long.
Dissemination
It is quite well
established that Deaf people are much less likely to know the
results of research on their own community than are hearing
people ie hearing workers with the Deaf community. This is a
simple result of dissemination through written means. Research
on the Deaf community and concerning sign language (linguistics,
sociolinguistics) should offer a means of dissemination to Deaf
people which is accessible. Typically this means that research
projects should return to provide live feedback sessions to the
participants or the Deaf community as a whole and that all
research should end with an accessible explanation on video,
CD/DVD or on the Internet. The easily usable tools make this a
feasible requirement for all research projects.
Effects on
Deaf Communities and Individuals
In carrying out
research, it is often the case that new ideas are presented, new
equipment is demonstrated and new options for services are
explored. It is very important that researchers take great
care to avoid becoming advocates for change, activists in
promoting change nor raising hopes and expectations
unrealistically.
There are a number of
methodologies which require the researcher to work very closely
with the community and indeed to act as change agent. It
is important in these cases that the role of the researcher is
set o9ut clearly. It is also vital that the proposed
"length of residence" or extent of personal commitment by the
researcher is made explicit.
In the course of
research, it is often the case that the researcher exposes
injustice or personal problems. It is important that the
researcher avoids becoming an adviser or confidant of the
participant(s) unless that role is clearly specified and is
considered part of the research methodology. In any case,
requests for personal support which go beyond the initial
expectations of the research aims, should be discussed with line
manager, supervisor, principal investigator or other more senior
researcher.
Minority Groups and Deaf People in Other Countries
Where a participant is a
member of a minority group, it is vital that value judgements,
critical comments or other prejudicial statements are made,
either at the time of the data collection or in reporting on the
data.
In the case of research
work with Deaf people in other countries, especially Developing
Countries, there are additional issues concerning the use of
British Sign Language by the researchers. In many cases,
the researcher occupies a privileged position as a (rich,
powerful) academic (teacher/researcher) with contacts with
authority figures in that country. As well as seeking
patronage by the researcher, participants may seek to copy the
language or to use the presence of the researcher as validation
for their own activities.
In the case of language,
it is important that the researcher is sensitive to the need to
learn the native sign language and to avoid as far as possible,
implanting signs from BSL, whenever a native sign does not seem
to be available.
It is also the case that
organisations and interactions take place in each country in
ways which may not be apparent to the outsider. The fact
that a Western infrastructure may not exist, does not mean that
people are not interacting effectively in their own terms.
It is impossible for the researcher to know these connections in
the early stages of work. It is therefore extremely
important that the researcher is sensitive to their position of
endorsing particular groups or methods or practices without
understanding the whole range of activity in that country.
Suspending Confidentiality
In the case of crime,
neglect or evidence of child abuse discovered in the course of
research, it is vital that the researcher makes clear to the
participant that this places in jeopardy the role of the
researcher as originally agreed. It should be stated that
information disclosed from that point onwards in the data
collection, may be subject to reporting to line manager,
supervisor, principal investigator or other more senior
researcher. in turn, in serious cases, it may be a legal
requirement that the researcher in conjunction with the senior
staff, is required to report the matter to police or legal
authorities.
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