1. Guiding Principles
2. Preliminary Questions
3. Practical Guidelines
disabilities should be included in all research and when we
the following ethical guidelines must be agreed upon and observed
for the researchers to benefit from the expert and willing participation
of Pacific DAWN: Pacific DisAbled Women's Network
1. GUIDING PRINCIPLES
Women with disabilities have unique perspectives and understandings,
which derive from our experiences in the largely inaccessible
world in which we live. Research that has the experience of
women with disabilities as its subject matter must reflect these
perspectives and understandings.
Whenever possible, research concerning women with disabilities
must be inclusive of all women with both mental and physical
disabilities. When a group of women with a specific disability
(e.g., mental illness) wish to research their own disability-specific
issues DAWN may support/endorse
Research concerning women with disabilities has usually been
initiated outside the disability community and carried out by
non-disabled people. Women with disabilities have had almost
no opportunity to provide correct information or to challenge
non-disabled and/or male interpretations of our experiences.
Consequently, much of the existing body of research, which normally
provides a reference point for new research, must be open to
Knowledge that is transmitted by any means of communication
by women with disabilities must be acknowledged as a valuable
research resource (e.g., American Sign Language, Bliss boards,
Telephone Devices for the Deaf, Braille, etc.) along with documentary
and other sources.
In research portraying women with disabilities, the multiplicity
of viewpoints presented by the lives of women with disabilities
should be represented fairly. DAWN encourages research that
includes women with a wide range of disabilities and that represents
fairly the perspectives of women of diverse ages, ethnicities.
sexualities, classes, races, etc.
Researchers have an obligation to understand and observe the
protocol concerning communications within any community of women
with disabilities (e.g., women who experience communication
and education barriers such as women who are non-verbal, women
who are blind, hard of hearing or Deaf, women with learning
disabilities or those labelled mentally handicapped).
Researchers have an obligation to observe ethical and professional
practices relevant to their respective disciplines.
shall conscientiously address themselves to the following
there perspectives on the subject of inquiry that are distinctively
access oriented?/gender specific?/disability specific?
disability sources are appropriate to shed light on those
- Is proficiency
in a disability language/format required to explore these
perspectives and sources?
there particular protocols or approaches required to access
the relevant knowledge?
disability knowledge challenge in any way assumptions brought
to the subject from previous research?
- How will
the disability knowledge or perspectives portrayed in research
products be validated?
for conducting the research must reflect the social reality
lived by women with disabilities in any given areas. Questions
must not be based on
the idea that it is the women or her reality that causes the
that it is caused by her interaction with the inaccessible environment
Instead of asking: What complaint causes your difficulty in
holding or gripping the bottle?, one could ask : What defect
in the design of the bottle causes you difficulty in holding
or gripping it? (Oliver 1990).)
research tools must be evaluated by a DAWN Research Committee
or group of women with disabilities in conjunction with like-minded
progressive researchers to ensure that the tools do not "blame
the victim" for social problems.
possible, the principle of equality rights should be applied
to any research
- A review
of research results shall be solicited both in the community
of women with disabilities and in the scholarly community
prior to publication.
To Research Results
reports of research activities must be made available to the
research participants. Reports may be circulated in draft
form, where scholarly and disability community response at
this stage is deemed useful.
reports or parts thereof shall not be published where there
are reasonable grounds for thinking that publication will
violate the privacy of individual women with disabilities
or cause significant harm to participating communities of
women with disabilities or organizations.
of community research shall be distributed as widely as possible
within participating communities, and reasonable efforts shall
be made to present results in Plain Language and appropriate
- In setting
research priorities and objectives, the researcher(s) shall
give serious and due consideration to the benefits for the
community of women with disabilities.
possible, research should support the transfer of skills to
individual women and increase the capacity of the community
of women with disabilities to manage its own research.
- In assessing
community benefit, regard shall be given to the widest range
of community interests and also to the impact of research
at the local, regional and/or national levels.
consent shall be obtained in all required alternate formats
from all women with disabilities and groups of women with
disabilities participating in research, regardless of the
type of disability.
should ordinarily be obtained in writing. Where this is not
practical, the procedures used in obtaining consent should
or groups of women with disabilities participating in research
shall be provided with information about the purpose and nature
of the research activities, including expected benefits and
- No pressure
shall be applied to induce participation in research, monetary
should be informed that they are free to withdraw from the
research at any time.
should be informed of the degree of confidentiality that will
be maintained in the study.
- In studies
located principally in disability communities, researchers
shall establish collaborative procedures to enable community
representatives to participate in the planning, execution
and evaluation of research results.
- In studies
that are carried out in the general community and that are
likely to affect particular communities of women with different
kinds of disabilities, consultation on planning, execution
and evaluation of results shall be sought through a DAWN group
or other appropriate body of women with disabilities.
- In community-based
studies, researchers shall ensure that representative cross-disability
experiences and perceptions are included.
convening of advisory groups of women with disabilities to
provide guidance on the conduct of research shall not pre-empt
the procedures laid down in this document but shall supplement
guidelines shall be observed in all research contracts with
individual women with disabilities, groups of women with disabilities,
agencies, organizations and communities conducting research
about women with disabilities.
- It shall
be the responsibility, in the first instance, of all researchers
to observe these guidelines conscientiously. It shall be the
responsibility of a Research Committee of DAWN to monitor
the implementation of the guidelines and to make decisions
regarding their interpretation and application.
the nature of the research make these guidelines or any part
of them inapplicable, such exception shall be reported to
the DAWN Research Committee and the exception shall be noted
in any publication resulting from the research.