Ask Us Too!
Participatory research
with disabled children in South Asia
focusing on wellbeing and livelihoods
Mary Wickenden
Institute for Global Health, UCL
Disabled children and young people (CYP) in lowincome settings - A multi-disciplinary approach
Childhood
Studies
International
Development
Disability
Studies
Participatory work with children
and young people
 A growing trend with children globally
 New sociology of childhood (James & James 1998)
Children as people with things to say - Social actors
Global Contexts
 Punch S. (2000), Boyden, & Ennew (1997) Hart (2008),
res. methods with children
 White, S. & Choudhury S. (2007) – researching the lives of CYP
in order to inform policy
 ‘Young lives’ study – Looking at CYP & poverty in 4 countries
Disability Research ?
• About the impairments
(eg epidemiological, clinical (aetiology, features, management)
• About the disability
(the nature of disabled people’s lives, individual experience,
sociopolitical, service related)
Disabled people argue that research should be with them not
on or about them!
>participatory/emancipatory<
‘Research about children’s lives is… essential if policies
and programmes are to become more responsive and
relevant to their concerns and needs’
(Boyden and Ennew 1997:10)
Research with disabled CYP in the Global South
Very few examples
Researchers usually ask proxies about Disabled CYP’s lives
(e.g. parents/teachers) rather than asking them directly
 Kembhavi-Tam G – disabled teenagers in Bangalore – aspects of
participation
 Leonard Cheshire International
Young Voices – speak out. (re the UNCRPD)
www.LCDisability.org/youngvoices and www.youtube.com/youngvoiceslcd
Intro to the study
Aims
 To investigate aspects of inclusion, equity and poverty with disabled
children and young people (CYP) and their parents in South Asia
 To explore the lifeworlds of CYP in urban and rural India and Sri Lanka
 To understand the perceptions and experiences of parents of disabled
children in urban and rural India and Sri Lanka
Research questions
 Main question
 What are Indian and Sri Lankan disabled
CYP’s and their parents' perceptions of
their relative poverty, equity and social
inclusion within their communities?
 Subsidiary questions
 How do these perceptions compare with those of nondisabled CYP
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and their parents living in the same communities?
Are there determining factors and drivers linking disability, poverty
and social exclusion for CYP in South Asia, and what could change
these in the future?
Are disabled CYP with particular characteristics (type of
impairment, gender, socioeconomic status (SES), school
attendance, rural or urban) relatively poorer or more excluded than
others?
How can poverty within families best be investigated and described
in South Asian contexts?
Which research methods are successful in including disabled CYP
in participatory research in South Asia and what are their
challenges?
Study design
Disabled children’s meetings and parent interviews
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India and Sri Lanka (working with local NGOs)
Rural vs urban
Older and younger groups (8-12, 13 – 18)
Broad range of types of impairment
Comparison with nondisabled children and families
Local partner organisations >
NGOs (running CBR & inclusive education programmes)
University Depts. (Disability studies & sociology)
Background - India and Sri Lanka
(both countries – massive disparities of wealth, opportunities &
services - but rapid growth & change)
 Poverty (relationship with disability is contested)
 Disability policies (local legislation , impact of UNCRPD?)
 Disability awareness , activism and rights -patchy
 Disability benefits & services – patchy (still a health focussed
approach)
 Education for disabled children – Officially Inclusive but...
 CBR as the main strategy for service provision (WHO 2010)
Community Based Rehabilitation (CBR)
Community-based rehabilitation (CBR) focuses on
enhancing the quality of life for people with
disabilities and their families, meeting basic needs
and ensuring inclusion and participation. CBR was
initiated in the mid-1980s but has evolved to become a
multi-sectoral strategy that empowers persons with
disabilities to access and benefit from education,
employment, health and social services. CBR is
implemented through the combined efforts of
people with disabilities, their families, organizations
and communities, relevant government and nongovernment health, education, vocational, social and
other services. (WHO website)
WHO 2004
Pilot study
 To explore the feasibility of the study with partner orgs
 To explore participatory methods with dis children
 To trial the parent interview – topic guide/questions
 To gauge interest in the project with children and
parents
 To collect some preliminary data from CYP & Parents
Information and consent
(parents & CYP) a variety of methods
Children’s meetings (x8)
Older & younger groups in rural and urban settings
in both countries
Some examples of methods/activities
 Visual timetable of the plan for the meetings
 Visually supported discussions – pictures, symbols, signs
e.g.
- My Important People
- Things I like and don’t like
- Scenario/story
- Feedback on the meeting
- Ideas for future meetings – we’ll organise it, my future, do some cooking
My Important People
Things I like and don’t like
Scenario – Ranjit’s story
Feedback on meetings
What could we discuss in future meetings?
Methodological issues in doing
participatory research with disabled children
Children who are not used to being consulted
lack of experience of choice-making/expressing views
(lack experience of agency)
Parents’ and teachers’ surprise
Limited world view – so open questions quite challenging
(especially poorer children – living rurally – no TV/books/internet)
Non-school attenders – not used to being in group with other children
Poor literacy skills/not used to pictures etc
School attenders
Very formal didactic experiences at school
Tend to think there is a right answer – looking for clues about what this might be
Freedom to speak or Learnt responses ? – ‘moral’ response
(what a good muslim/hindu/budhist should say)
More on Methods
Need very skilled adults!
 Need for visual/picture support/sign language
 Time !!
(repetition + reframing of questions/slower responses,
time to think, time to develop a topic)
Flexibility in plan - concentration span, emotional responses, diversions etc
 Build in fun ! Make sure its not like school!
 Have something practical to do – not just talking – objects, drawing, sticking, choosing
Realistic expectations about ‘depth’ of the responses – ‘why ‘questions are tricky
 Some questions may be off limits or conceptually too difficult – but try!
 Consider the danger that we’re reifying a particular identity that CYP may not have
Logistics
 Video as well as audio record (audio of group very difficult to transcribe)
 High adult>child ratio (max 5 children – 2/3 adults)
 If possible don’t have parents or teachers present
 Other children as helpers/friends?
 Mixed groups of children of different ages/different impairments? (pros and cons)
Parent interviews – semi-structured
 Exploring family life
 Impact of having a disabled child
 Resources available – within family & community
 Multidimensional poverty (Mitra)
 The anticipated future
 What could/should change?
Methodological issues arising from parents’
interviews
 Training of interviewers
 Parents’ expectations of the study
 Translation and interpretation – not always possible to
translate the exact meaning – implied or culturally specific
meanings, things that can’t said
 Direct questions and direct answers – culturally
inappropriate?
Preliminary themes from parents’ interviews
Need for more accurate information about their child’s impairment
at the start & over time
Needs for equipment – eg wheelchair /hearing aid
Extra expenses and money worries (generally & in relation to
disabled child)
Worries about the future – linked to money worries and about how
the dis CYP will manage
Perceptions of poverty – didn’t report being poor but their report of
expenditure provided examples of extra expenses
Rich families –able to chose specific education /hearing aids
Middle class – private tuition/private school – but a struggle –
wanting to do the best
Poorer– affected by loss of income of one carer , trying to find a
school
Parents data continued
Attitudes of others in community – mixed – positive & negative. need for change of
attitudes
At the same time – resistance to other’s views – we must get on with it. We go anyway.
The role of extended family – generally supportive – re childcare and financially
(monetary & inkind)
Trying to be fair to all the children in the family – the dis CYP as just one of their
children
The role of local religious or folk beliefs and faith (fate)
Perceptions about school - the need for special schools – not much concept of
inclusion
Health related – long queues at the hospital, travelling long distances to get 2nd
opinions, stressful + costly
Next steps
The main study
 A series of children’s meetings over a few weeks or
months
 Interviews with all parents of children participating
 Data from comparison nondisabled CYP & their families
 Quantitative data on household income and expenditure
Thanks for listening
Mary Wickenden
m.wickenden@ucl.ac.uk
Acknowledgements
 All the Children and Parents who joined in
 Local partners & colleagues in India and Sri Lanka
Vishwas (Gurgoan, India) (Ruchi Singh)
FocusAbility (Colombo, Sri Lanka) (Ianthe Perera & Thilanka Wijesinghe)
Navajeevana (Tangalle, Sri Lanka) (Nandarathna)
University of Kelaniya - Dept of Disability Studies
(Profs R Wikramasinghe, & N de Silva)
University of Colombo – Dept of Sociology
Prof R Jayatilake, Dineshika Mirihana
• Colleagues at IGH. Dr Jolene Skordis and Anni Pulki Branstromm
 British Academy
(Small grant for funding this Pilot study)
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