Leonard Cheshire Disability and Inclusive Development Centre
University College London
DFID Crosscutting Disability Research Programme
Report of Participatory Research Workshop held in Bangalore,India
5th- 6th April 2010
INTRODUCTION
This report outlines the proceedings and discussions on the participatory research
workshop that was held at the Manipal County, Bangalore, India, on the 5th and 6th of
April, 2010. The overall objective of this workshop was to actively engage with
disabled people’s organisations, mainstream and disability-specific NGOs,
universities and research institutions, as well as the international donor community,
in assisting in determining the research priorities for the DFID Crosscutting Disability
Research Programme in the South Asia Region. It was also hoped that this meeting
would provide an opportunity for disabled people's organisations, and academic and
research institutions, to identify possibile future partnerships. It is also anticipated
that the new knowledge generated through this research programme will inform and
influence DFID and other bilateral and multilateral donor agencies of including
disability issues within their core development programmes.
Senior representatives from Bangladesh, Nepal and India, attended the workshop.
The list of participants is provided in Appendix A to this report.
CROSS-CUTTING DISABILITY RESEARCH PROGRAME OVERVIEW
The workshop began with presentations from participants about their organisations
(see list of participants in Appendix A). This was followed by a presentation from
Prof. Nora Groce on the strategic objectives, core components, research activities
and proposed communications strategies of the research programme, as well as
providing a brief introduction to the Leonard Cheshire Disability and Inclusive
Development Centre. Prof. Groce stated that this three-year research programme
was still in its inception phase, and that it has come at a very appropriate time, given
that policy-makers and development practitioners are now giving serious
consideration regarding the future architecture of international aid, under what will
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happen in the aftermath of the Development Millennium Goals post-2015. At the
outset, it was emphasised that priority will be given to working with other DFIDfunded research programme consortia, both within Southeast Asia and globally.
Hence, a disability component would be incorporated into other mainstream
development research. Furthermore, it was stated that this was one of a series of
four regional participatory workshops, that will be held in South Asia, West Africa and
East Africa. It was also highlighted that during the first year of the three-year
programme, up to 6 pilot projects would be commissioned during the first year, and
the subsequent more in-depth research project will be commissioned in both the
second and third years. It was also emphasised that, where at all feasible, a priority
would be given to utilising the skills of disabled people in conducting the research
that will be commissioned under the auspices of this programme.
GROUP DISCUSSIONS
Following the presentation, participants were invited to split into three groups for a
brainstorming session in order to identify and discuss disability research priorities in
the South Asia region. The group session has been very prolific considering that
many issues have been identified by the groups.
Issues identified by Group 1:
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To what extent are persons with disabilities included in MDG?
What are the key factors influencing implementation of CRPD in different
countries? How effective are DPOs? Awareness and engagement on CRPD
among mainstream development agencies.
Are there differences between persons with and without disabilities, and
between men and women with disabilities, in accessing mainstream
development interventions in poor communities?
How effective are community-based rehabilitation programmes in promoting
rights and improving access to development assistance (poverty alleviation,
housing, education, employment, social security) for persons with disabilities?
How can primary health care systems in developing countries (especially
remote rural areas) become more responsive to the needs of persons with
disabilities?
To what extent is there access to universal design?
How effective are statutory bodies (e.g., Human Rights Commission,
Women’s Commission) in addressing disability issues?
Do DPOs participate in mainstream development debate and implementation?
To what extent do mainstream development agencies include disability
issues? Are there stated policies? If so, to what extent are they implemented?
Are persons with disabilities part of the organisation at different levels? How
can key stakeholders (government, DPOs, NGOs) work together to ensure
inclusion of disability into all development processes?
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Status of implementation of existing disability specific legislation; and
awareness of such legislation among primary stakeholders
Marginalised groups within the disability sector who are subject to multiple
discrimination – ethnicity, indigenous, gender, transgender, sexuality, location
(unreached rural communities, island communities), category of impairment.
Do DPOs use the intersectional approach?
Identify gaps in data
Mainstreaming of disability in conflict and climate change issues and
programmes
Issues identified by Group 2:
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Prevalence: how many people?
Health
Links between causes of disabilities and maternal child health, nutrition, lack
of food security for people with disabilities
Mental health services for people with disabilities
Looking into the mental and physiological implications of insurgency
The issue of insuring continuous healthcare for persons with ongoing health
concerns: chair users and people with epilepsy
Educate and motivate parents and keep them involved: what actually works?
Getting mobility aids to people and follow up to see how successful it has
been: How to promote local sustainable mobility interventions?
Are there health problems that are caused by inadequate devices?
Need for job training and social skills in terms of livelihoods
What are the needs for vocational training and are trainings outdated and
why?
Education and disability: mainstreaming or main dumping?
Issues identified by Group 3:
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Chronic information poverty: How to make access to education, information
for all? How to remove barriers: transportation, language, etc.? What is the
correlation between information poverty and chronic/multidimensional poverty:
powerlessness, access to education, health, oppression of minorities and
exclusion?
Research process and participation: Persons with disabilities have to be
included: how? In what aspects? Policy making process, technology definition
process? What are the barriers to implementation of policies?
Remove prejudice and stigma: Changing the minds of non-disabled people:
how? How to change mentalities? How to use legislation as a leverage for
sensitisation and advocacy?
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Vocational training and employment support: access for people with
disabilities
Community-based rehabilitation programmes: Countries provide for different
facilities but these do not reach people. There is a need for research on how
to implement legislation, schemes, and services.
The group brainstorming was followed by a general discussion on how to prioritise all
of these issues. The debate covered the following:
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Issues around Community-based rehabilitation: how to evaluate CBR? Lack in
publishing and documenting their processes. Links participants take for
granted that need to be documented (for instance links at horizontal level).
CBR create links based on existing resources. The fact that new CBR
guidelines and matrix might help to do this. The question of how CBR help
people to access pension scheme, ID, NREGA. CBR reports don’t get
published and the information is not available. There might be a problem of
copyright as well. Sometimes there is no report: or possibility to document at
all, and there are no resources available to invest in monitoring and
evaluation.
Issues of health and rehabilitation in India and the region. The question of the
ownership in the rehabilitation process. In India, participants considered that
rehabilitation facilities not run by the Government are not sustainable. In
Government health system, they also argued that inclusion and rehabilitation
do not happen at all.
Issues around prejudice: How to inform and fight prejudice? Non-disabled
people are not willing to accept abilities of persons with disabilities. Deeply
entrenched beliefs were considered a major barrier. For instance, in the
Indian legislation the disability-related issues in general law are based on
what a person with disabilities cannot do not on what this person can do; the
legislation is influenced by the medical model and it is mainly passively
inclusive. Prejudice in mainstream agencies around disability: “we don’t have
the skills to do it”. Due to prejudice, several categories of persons with
disabilities get left out. Sensitisation has to be done among non-disabled
people and more specifically among policy makers. Critically engage with
Government policy makers. Participants from India who were disability
activists explained their motto: “cooperate where you can, resist where you
must”. They gave the example of banks’ refusal to open accounts for persons
with visual limitation. The case was taken to court and a change in the bank
sector’s regulations was decided by the bank association.
Issues around the many difficulties of doing research on disability. There is no
data available. To have disability included in the Indian census: some
participants explained that it has been quite a fight. In the region, DPOs have
not start yet claiming for education, health and employment or social
participation. Participants advocated for moving towards evidence-based
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studies/knowledge. They argue that issues might be better understood but the
numbers are still missing. Comparability of methods in various settings are
also an issue. Participants argued for the inclusion of disability questions in
mainstream household labour surveys
Issues around processes: there is no one in the process of mainstreaming
who knows how to do it/how inclusion of persons with disabilities should be
done. Study: factors that contributed to the ratification of UNCRPD and what
where the preventing factors? Disability is often forgotten in needs
assessments done for programme implementation.
Issues around employment and livelihoods. Modern technology creates new
livelihoods. Internet centres in India should be accessible from the outset.
How to incorporate people with disabilities in microcredit/informal activities?
Debate around the need for recognition that people with disabilities have the
same fundamental needs: there are human beings as well . Livelihoods: what
do we know? Participants enumerated existing studies: P. Coleridge study on
livelihoods in Africa and Asia, livelihoods in poor communities. Handicap
International study on livelihoods in India.
Issues around education. Inclusive education is already widely researched.
But what about quality education? Participants raised many questions linked
to this: How to prevent high drop out rate of children with disabilities? People
with disabilities who do not get into inclusive education: what happen to them
as young adults? What education system: in as well as out of the classroom?
What is the relevance for children with disabilities of an education system
whose characteristics are based on the requirement of the industrial
development: the teacher is at the centre of the process; there are no
differences between pupils and all students have to learn at the same pace?
Participants argued that inclusion in school is a goal first (and a means to
participation), but that we must not undermine the best interest of the child.
They argued that quality depends on local conditions. Quality education is
important: where does the child feel fine? Another issue is the condition of
schooling: crowded classes. How can the teacher face all needs? And master
all skills? Inclusion at what cost? Is the child feeling comfortable in crowded
classes? Another issue dealt with special abilities: Where to go to develop
those skills (art, music…)? Can distance learning be considered as a source
of quality development? They further expand the debate towards practical
difficulties to be focused on: What to do with the relatively smaller group of
children who cannot go to school because of their impairment? The problem
of enormous amount of violence linked to prejudice (rickshaw drivers,
teachers, parents). Another discussion came up around CBR programmes:
can they provide non formal education for uneducated adults with disabilities?
Is education the solution to inclusion? Participants gave the example of the
2008 Poverty and Disability Study in Nepal that reports high level of
education, yet despite this, poverty and employment are still a major problem.
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Debate regarding the dynamic nature of disability and ability. If ability is
having all abilities, then it was argued that we all have a few abilities and a
very large number of inabilities. How to deal with inabilities? One process to
deal with inabilities is education. Another one is technology: it creates at the
same time ability and disability. It is a dynamic process, we are part of it and
maybe we can change it.
Debate around how to find more about good practices, initiatives,
programmes, exiting legislation, active actors: active departments, very active
DPOs working in partnership with governments. Importance of partnerships
between key stakeholders.
Participation. Consultation with people with disabilities/DPOs: how does it
work? Do people with disabilities enter into them? How to move from bottomup process to mainstream? Participants were keen to see comparative
studies where people with disabilities have been involved or not in the
process. Examples of participation: UNDP country assessment: disability
included after lobbying Confederation of Indian industries in Karnataka:
Consultation on employment of workers with disabilities. Handicap
International in Orissa is now involved in the disaster management process.
Participants argued that we need KAPs study to know why participation
worked in some cases.
SUMMARY OF GROUP DISCUSSIONS
On the second day of the workshop, the 3 groups were asked to select a few
priorities and a rapporteur presented them to the rest of the audience. In the light of
this, all participants were then asked to prioritise what issues they considered to be
most important when commissioning the research. Dr Trani summarised the key
points that arose from these proceedings:
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Mainstreaming effectiveness in the development sector at large, with
particular attention to arenas such as equal access to training for work,
employment
Sensitisation and education of key actors in the development sector, with
particular reference to areas where attention if often lacking, such as the
agricultural sector, access to water and sanitation needs, and so forth.
Participation of persons with disabilities in debates, policy making,
programming (including through DPOs)
Lack of information: necessity of data (article 31 of the UNCRPD)
Employment promotion and poverty reduction concerns, with the need for
data to track progress – or lack there of.
Health (particularly the overlooked areas of mental health, and gender and
health)
Gender and disability as a cross-cutting issue.
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Looking at the issue of health and well being for individauls with specific types
of disability who may be at increased risk even compared to the general
disabled population. Singled out as needing increased attention were
individuals with mental health concerns, those with intellectual disability and
psychosocial disability, and the mental health status of persons with other
types of disabilities (i.e. mental health needs of persons with intellectual
disabilities).
Prof. Groce again highlighted that this was the beginning of an ongoing process.
This regional workshop was useful to help determining the priorities for the research
that will be commissioned under the auspices of the DFID programme.
NEXT STEPS
Participants also discussed what could be done next in the South Asia Region to
promote inclusion of disability into existing research programmes and into policies
and action. Dr Trani outlined possible next steps:
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Identification of broader research programmes in the South Asia Region
where disability could be included
Developing or adapting tools for sensitisation and advocacy: especially for
follow up to show long term results.
Engaging businesses in the region for employment and internships for
persons with disabilities How is it feasible? How can the backlog be
addressed? Identification of good practices.
Attention to systematic identification of what is successful in the informal
employment sector for persons with disabilities
Education: Right to Education Act in India. How far has this succeeded? Is
it/ can it be a regional model?
Prof. Nora Groce concluded the workshop by thanking all participants. She
reassured participants that the proceedings and deliberations from the workshop will
feed directly into the future planning and strategic direction of the DFID Crosscutting
Disability Research Programme. Furthermore, a report will be sent to each of the
participants. It was also highlighted that there was an intention to establish four
regional hubs, including one in South-East Asia, each of which will have their own
website. All future developments regarding the programme's activities, including calls
for future research will be posted there. It was also suggested that the participants
could form an e-mail group in order to facilitate networking between each other,
particularly with regard to disability and development research.
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APPENDIX A: List of Participants
Name
Dr. Nora Groce
Dr. Jean Francois Trani
Dr. Arun Mehta
Mr. David Thomforde
Mr. Kirti
Organisation
UCL/LCD
UCL/LCD
BAPSI
Handicap International
MIRA
Dr. Rakesh Jain
Dr. Nayreen Daruwala
Ms. Vinita
Mr. Prasanna Kumar
Pincha
Dr. Asha Hans
RSVI, Lucknow
SNEHA, Mumbai
CREA
National Human
Rights Commission
Shanta Memorial
Rehabilitation Centre
AIFO Italy
Asia Pacific Disability
Rehab Journal
TISS
Mr. Sunil Deepak
Dr. Maya Thomas
Dr. Sandhya Limaye
Email
noragroce@ucl.ac.uk
j.trani@ucl.ac.uk
Arun.mehta@gmail.com
dthomforde@hi-india.org
meramak@ntc.net.np ;
jetha_subba@hotmail.com
Dr.rjain@gmail.com
nayreen@snehamumbai.org
svinita@creaworld.org
prasannapincha@gmail.com
Smrc_bbsr@rediffmail.com
Sunil.deepak@aifo.it
M_thomas@rediffmail.com
Limaye.sandhya@gmail.com
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