Conference Report
The Future of Global Disability
Research
11 October 2010, University College London, UK
M. Wickenden, S. Wirz, N. Groce
INTRODUCTION
A one day conference was hosted at University College London (UCL) by the Leonard
Cheshire Disability and Inclusive Development Centre and the Centre for International
Health and Development (CIHD) at the Institute of Child Health. The event was funded
by a UCL ‘Futures’ award.
The aim was to gather experts and advocates on disability, representing a range of
perspectives, who are interested in improving the lives of disabled people, with an
emphasis on the global South1. Academics, representatives from UN agencies,
disabled person’s organisations (DPOs), international non-government organisations
(INGOs), activists, and rehabilitation and development professionals working in the
disability arena were invited to discuss gaps in knowledge and priorities for future
disability research. We envisaged multidisciplinary discussions and the identification of
key issues and challenges. Additionally it was hoped that the conference would sow
seeds for new understandings and collaborations across disciplines, diverse agencies
and interested groups in the disability and development arena.
The day was attended by 100 participants and was structured into three core sessions,
looking at the gaps and priorities for research from the perspectives of three key groups:
1. Bilateral and multilateral agencies;
2. INGOs and DPOs;
3. Academics/researchers.
There was lively interactive discussion, as well as a diverse display of 16 posters on
current or recent research. The day had a very productive, critical and interdisciplinary
feel with contributions from diverse arenas including health, education, politics,
economics, development, and law.
The keynote speakers were:
Session 1 Prof. Nora Groce (Leonard Cheshire Disability Chair, UCL)
Dr. Tom Shakespeare (Technical officer, WHO)
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Sometimes referred to as ‘developing countries’, ‘the majority world’ or ‘low income’ settings.
Session 2 Ms Diane Mulligan (Programme Development Advisor, Sightsavers)
Ms Sunanda Mavillapalli (Learning and Policy Team, Leonard Cheshire
Disability)
Session 3 Prof. Naila Khan (Dhaka Shishu Children’s Hospital, Bangladesh)
Prof. Michael Stein (Harvard Law School)
Dr. Michele Moore (Editor Disability and Society. Institute of Education,
University of London)
Concluding remarks Prof. Sheila Wirz (CIHD,UCL)
The keynote speakers provided substantive food for thought, in contrasting styles and
formats. Some presentations were challenging at an emotional levels, other
conceptually; a refreshing mix. There was ample discussion time after each
presentation, so themes were energetically expanded and dissected by participants in
the plenary sessions. We present here the main themes which arose from the day and
concluded with some key questions which participants agreed need further debate and
consideration by all who are involved in the ‘global disability research’ arena.
1. RELATIONSHIPS BETWEEN MAIN PLAYERS IN THE GLOBAL
DISABILITY ARENA
There was a sense that, despite common goals, the priorities of different players in
disability research are often disparate. Different stakeholders address and approach
disability issues in diverse ways and think very differently about the lives of disabled
people, driven by pressure from varying methodologies and philosophies, their
organisations’ aims, and by local, national and international structures. Some
contributors suggested that the gap between these different players has widened in
recent times and has made consensus and collaborations between these groups more
difficult and less common.
Those in the ‘real world’ doing work on the ground with disabled people (e.g. local or
international government or NGOs, DPOs, development and rehabilitation professionals)
often find resources (time, money, skills) for research almost impossible to obtain and
even more difficult to justify. They conduct their activities within the demanding world of
winning grants and maintaining programme and project funding for their organisations
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and such funding is further driven by the additional external pressures of meeting donor
priorities. In such contexts, research may be seen as a low priority or a distraction from
core activities; theoretical debates may be seen as interesting but unaffordable luxuries.
For these stakeholders, monitoring and evaluation of their core business: policy making
and implementing, service provision, advocacy, and attitude change is as close as they
are able to come to ‘research’.
However it is also clear that for many INGOs, both those working in ‘mainstream’
development and those focussing on disability understand that research needs to be a
fundamental part of their remit if they are to be able to most effectively target policies
and programmes for persons with disabilities, and are considering how to incorporate
this, alone or in synergy with researchers into their agendas.
Academic researchers are also under pressure. They have to maintain an
interdependent cycle of successful grant applications, good quality and relevant
research, and peer-reviewed publications, in order to be recognised as credible in their
institutions and in their disciplinary fields. This cycle can easily be perceived as ‘not in
the real world’. This is especially true if the results of research are published in formats
which are inaccessible to many and not seen by practitioners and INGOs as producing
practical solutions to real problems. There is agreement that we need robust, ethical
studies conducted by skilled researchers with the active involvement of disabled people.
Academic researchers can assist others to do good research, but this can be seen to be
challenging when the priorities and ways of working of different groups are disparate
and their activities are increasingly ‘siloed’.
INGOs and bilateral agencies often seem to speak yet another language. They are
often accused of being removed from reality. Coming with ‘top down’ solutions rather
than consulting closely with – and providing adequate funding for – local DPOs and
NGOs who have immediate practical experience in the communities in which they work,
such organisations are often felt to be setting agendas and funding projects that are not
considered priorities by communities and disability organisations themselves.
UN agencies face an additional set of challenges when it comes to disability research.
A core part of their ‘mission’ is to generate or identify the best evidence to inform policy
and practice. Increasingly they see themselves (and are looked to by others) as
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providing technical support for improved services (e.g. WHO Wheelchair guidelines
2008; WHO CBR guidelines 2010), statistics and other data (WHO World Report,
forthcoming) to support the implementation of the UN Convention on the Rights of
Persons with Disabilities (UN 2006) in both direct and indirect ways. They therefore
have an interest in supporting and possibly commissioning research activities, but
usually have very limited resources to be able to do so. They may also seek to impose
particular methods and structures on the process – such as is the case for the
Washington Group on Disability Statistics. Finally, they are often seen as biased
towards large scale, quantitative studies and in the case of some UN agencies such as
the World Bank, as driven by economic rather than human rights considerations.
2. ACCURACY OF DATA IN CURRENT USE
In regards to the need for accuracy of data now in use among researchers, policy
makers and practitioners (including DPOs, INGOs, and UN agencies setting global
agendas), Professor Nora Groce raised the point that for the most frequently quoted set
of data related to disability now currently in use (1 in 10 people are disabled; 97% of all
disabled adults are illiterate; 1 in 3 children out of school are disabled children; 1 in 4
households have a disabled member; while 1 in 10 people live in extreme poverty this
figure rises to 1 in 5 among people with disabilities) actual sources for the figures were
untraceable or involved misquotation or misinterpretation of the actual citation. In an
interviews with Acton from Rehabilitation International concerning the 1 in 10 figure,
Acton said he was ‘guessing’ and Elwan regarding the 1 in 5 poverty figure, said she
was being misquoted. Professor Groce stated that we need to move from ‘folklore’ to a
more systematic and critical review of what data is currently in use and a number of
discussants noted that the forthcoming World Report on Disability will make a
contribution to this move from unsourced references to a more considered use of data.
3. FUNDING INFLUENCES WHAT GETS RESEARCHED
There were seen to be gaps between what people on the ground want to know and
research that is perceived to be ‘fundable’. There are also issues around the relative
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importance given to quantitative and qualitative research, the quality of research and
the applicability or translational relevance of disability research. There is seen to be an
unhelpful divide between ‘real world research’ and ‘experimental designs’ which do not
investigate realities. Discussion across all of the sessions also returned repeatedly to
the fact that there often seems to be competition for resources and therefore an implicit
choice to be made between their allocation for development programmes (i.e.
interventions) and research. Thus, these activities are easily seen to be mutually
exclusive and in opposition, rather than complementary. There was agreement that
research needs to be part of programmes and therefore interwoven into development
activities from the outset.
Additionally, a number of points raised in discussion concentrated on the fact that the
findings from disability research have to be able to compete for attention within broader
‘mainstream’ areas: global health; economics; education; law; and human rights.
Speakers specifically highlighted the need for applied research exploring a range of
aspects of disability and disabled people’s lives including, but not exclusively focussing
on: impairments; medical and social interventions; inclusive education; poverty; water
and sanitation; employment; social protection and livelihoods; human/legal rights; and
inclusion issues. The challenge is that the interests of those in ‘the real world’ do not
always coincide with the priorities of research funders – or indeed of the editors of peerreviewed journals – that many researchers need to be in closer touch with disabled
people and organisations (both DPOs and NGOs) that work on behalf of disabled
populations. Additionally, DPOs need to better understand how research is generated
and how they can partner with researchers in order that they can better identify and
prioritise the research undertaken and research findings are more effectively
communicated and disseminated to make information useful and relevant to
organisations providing services and to the disabled people themselves..
4. PRIORITIES IN GLOBAL DISABILITY RESEARCH?
Notwithstanding the dilemmas and difficulties mentioned above, participants agreed on
a number of key issues as priorities for consideration in global disability research.
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
There is a need for inter-agency, cross-disciplinary and action orientated
research, focussing on the lived lives of disabled people. Implicitly this
includes research in which disabled people play active role. The voices of
disabled people and their families in the global south need to be heard more
clearly. What is needed is research ‘in partnership’ about what works for
disabled people. Ideally this should be participatory and collaborative
throughout the process so that the expertise of the different stakeholders is
combined creatively.

To maintain and improve the quality of research overall and to address issues
of conflicts of interest between participating groups. There is a need for
increasingly effective links between ‘real world’ actors and those in academia.
Additionally there is a need to ‘skill up’ a broader range of people to
collaborate in research, so that universities, INGOs, local NGOs, DPOs and
international and national government agencies work together rather than in
isolation or at cross-purposes. This would include recognising and working
with conflicts of interests and differences of perspective. The issue of
independence and objectivity within research was debated and it was
acknowledged that this can be challenging where issues around funding for
future work can cloud the study processes. The need for generating
collaborative funding initiatives rather than small, already overcommitted
organisations spending precious time and energy putting together proposals in
competition with one another was also highlighted as an area of concern.

The need for research to provide evidence to inform policy and practice at
different levels (e.g. individual, family, community, nationally, globally), was
highlighted by several speakers, but also the need for such policy and practice
to be orientated towards empowerment and engagement in real life settings.
There were examples of research focussing on aspects of disability,
impairment, prevention and how these have informed cross-sectorial policy
and practice. All are necessary and none should be dismissed as unimportant.

There was recognition and agreement that the current bias of disability
research activity towards developed countries in the global North needs to be
reversed, and that a stronger focus on poor, rural, as well as urban and under-
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resourced regions of the of the global South is needed. Currently there is a
great body of research findings, particularly from North America, Europe and
Australia. These findings are not always translatable to low-income settings,
yet they are often the only studies available in a number of areas. It is
imperative that funding be directed towards research that informs relevant
practice and programming in the contexts of the global South, and wherever
possible, researchers at universities and research centres in the countries in
which the research is taking place become increasingly involved and take the
lead on identifying, carrying out and publishing on these research topics.

Particularly neglected areas on which research on disability needs to focus are:
gender, children, the concept of vulnerability, and those with especially
marginalised impairments such as cognitive or communication impairments
and mental health issues. Researching these issues present a number of
specific methodological and ethical challenges but that does not provide
sufficient reason not to include them. In fact the exclusion of these populations
from disability research efforts serves to exacerbate their marginalisation.

The contribution of poverty as a key determinant in disabled people’s lives and
the mechanisms through which poverty operates needs in-depth analysis. An
interdependent vicious cycle between poverty and disability has been widely
reported but clear evidence is still rare.

Cost benefit analysis approaches are needed in the whole range of
intervention programmes and projects, including both disability and impairment
focussed activities, those that are disability specific and those that are part of
mainstream initiatives. This includes but is not restricted to development of
better monitoring and evaluation of activities. Without such data, the ability of
disability researcher and advocates to have meaningful dialogue with
development planners is severely limited. It was felt strongly by a number of
participants that the case for inclusion of persons with disabilities can be
strongly made but is currently not moving forward because of lack of this body
of evidence.
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
Recognition of the transformational power of different types of evidence is
needed. When designing studies several speakers underscored the
recognition that diverse types of evidence are likely to be valid and useful in
global contexts and that such evidence will serve a variety of purposes. There
were examples during the day ranging from qualitative approaches such as
personal narratives and critical incident analysis, through to small action
research models, policy analyses and large quantitative randomised control
trials. Several speakers mentioned the need explicitly to include disabled
people (and a range of disabled people: men and women, people with different
types of disabilities; different age groups) within large population level studies.
This would enable the disaggregation of data in order to better demonstrate
particular needs or circumstances.

There was perceived to be a need for clarity about what we mean by
‘evidence’ and how this can be put to best use. The issue of wider
dissemination of research, in appropriate formats, at different levels of
complexity and to the audiences who need it most was also raised.

Exploration of the mechanisms for the incorporation of disability perspectives
into policy at international, national and local levels is needed. The use of
human rights arguments as proposed by the UN CRPD needs to be paired
and supported with economic arguments in order to have an impact and
influence major bilateral agencies and funders.

There is a need for recognition of the value of ‘translational’ research
(borrowing this concept from scientific arenas), in order to bridge a perceived
gap between academic and real worlds. There was a strong sense that the
intellectual, the practical and the political are and should be intertwined within
global disability research and that all who are involved in it should be mindful
of these links.
CONCLUSION
This conference covered a wide range of issues, and while it did not solve any of the
issues raised, a number of important and timely themes were identified, which all
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participants felt must be considered in doing disability research globally. Although the
speakers and the audience came from a diverse range of backgrounds and
perspectives, there were many areas of overlap and consensus about priorities. The
four key questions identified by Professor Wirz in her closing summery were:
1. What do different stakeholders and agencies want from each other and how
can they work together more effectively?
2. How can researchers and practitioners influence the next funding ‘fashions’?
3. How best can we examine the nexus of poverty and disability?
4. How can we ensure that the best, most relevant and most important research
about disability is undertaken, and ensure that it is collaborative and inclusive,
and of consistently high quality to be used to improve the lives of disabled people?
REFERENCES
WHO (2008) Guidelines on the provision of Manual Wheelchairs in less resourced
settings.
http://whqlibdoc.who.int/publications/2008/9789241547482_eng.pdf
WHO (2010) Community-based rehabilitation: CBR guidelines
http://www.who.int/disabilities/cbr/guidelines/en/index.html
UN Convention on the Rights of Persons with Disabilities (2006)
http://www.un.org/esa/socdev/enable/rights/convtexte.html
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