‘Don’t see disability without ability’:
Listening to the voices of adolescents with
disabilities in South India
Gayatri Kembhavi
Centre for International Health and Development
University College London
June 10, 2009
Acknowledgements
• Professor Sheila Wirz
• Dr. Thérèse Hesketh and Dr. Maya Thomas
• Community health workers and programme
managers at Mobility India, the Association for
Persons with Disabilities and the Spastic Society
of Karnataka
• The adolescents, their parents and their peers for
sharing their experiences with me
Research Question
How do adolescents with physical disabilities
perceive the factors that determine their
participation and inclusion in their communities in
South India?
Adolescence – some definitions
• UNICEF (2001): adolescence ~ 10 and 19 years
• Social implications define adolescence and vary
between countries (Brown and Larson, 2002)
• Variance can also exist between socio-economic
groups within the same country
• Majority of the discourse is based on a ‘western’
view of adolescence
Adolescence – a period of transition
• Period of transition from childhood to adolescence
is critical phase in social, emotional, and physical
development
• Skills required in adulthood are developed during
adolescence
• Majority of research and services for children with
disabilities focus on the under-6 years age group
• These research findings and services are not
applicable to adolescents
Why adolescents with disabilities?
• The need for inclusion and participation in
education, family life, friendship, employment and
health is no different for adolescents with
disabilities than their peers
• “What distinguishes this large group of youth are
not their common needs, but the fact that these
needs continue to go so largely unmet.”
-Groce, 2004
How many?
• UNICEF estimates that there are 1.9 billion
adolescents in the world, with 80% living in lowand middle-income countries
• Approximately 152 million adolescents with
disabilities (AWD) living in low- and middle-income
countries
Why participation?
• Definition from WHO: “Involvement in a life
situation” (International Classification of Functioning, Disability,
and Health (ICF), 2001)
• The social model of disability demands that
research, programme planning and service
delivery should focus on participation and not
impairment
• Participation needs to be meaningful, not
tokenistic
Participation - a matter of rights
• Participation is a right that is stipulated in the UN
Convention on the Rights of the Child (UNCRC,
1989) in Articles 12 and 23
• The right to participation is also included in the
guiding principles and Article 3 of the UN
Convention on the Rights of Persons with
Disabilities (UNCRPD, 2006)
Research on participation
• Participation is difficult to measure
• Few validated tools that ‘quantify’ participation in a
meaningful way
• Majority of research about participation of
adolescents with disabilities is primarily from North
America, Europe and Australia
Barriers to participation – findings from
research
•
•
•
•
•
•
•
Physical barriers
Psychosocial pressures
Lack of public services
Attitudes
Pain
Energy
Lack of independence (physical, emotional,
financial)
(from Bent et al., 2001; Mihaylov et al., 2004)
Adolescents with disabilities in low- and
middle-income countries
• Research and service delivery can only be
effective if we include their voices
• Meaningful participation may require additional
support
• Important to understand ‘participation’ from their
perspective
• Successful adulthood is enhanced by successful
participation in adolescence
“For persons with disabilities, issues such as living
independently, finding meaningful work, and an
accessible physical environment are more
important than looking normal.”
- from Darrah J et al. (2002). How well are we doing? Families
of adolescents or young adults with cerebral palsy share their perceptions of
service delivery. Disability and Rehabilitation, 24(10): 542-549.
Research Objectives
1. To examine the quality of life (QOL) of
adolescents with physical disabilities (AWD) from
their perspective and the perspective of their
parents/caregivers.
2. To compare the QOL of AWD to the QOL of their
non-disabled peers.
3. To explore the views of AWD about their
levels of participation within different sectors
of their communities.
Research Framework
The WHO International Classification of Functioning, Disability and
Health (2001)
Methods – Research location
http://www.askasia.org/images/teac
hers/display/48.jpg
Some facts
•
•
•
•
Karnataka
Total population:
52 733 958
Literacy: 67%
Female/male ratio:
964:1000
Reported disability rate:
2%
(from Indian Census, 2001)
•
•
•
•
Bangalore
Population:
6 158 677
Literacy rate: 83%
Total slum population:
10%
Estimated population with
disabilities (10-18 years):
30 000
Research sites in Bangalore, India
Spastic Society of
Karnataka
DJ Halli
LR Nagar
Participants
1. Adolescents with physical disabilities (n= 37)
2. Parents/caregivers of adolescents with
disabilities (n=25)
3. Adolescents without disabilities (peers known to
adolescents with disabilities) (n=24)
Collaboration with local agencies:
• Mobility India (est. 1994)
• Association for Persons with Disabilities (est.
1959)
• Spastic Society of Karnataka (est. 1982)
Adolescents with physical disabilities (n=37)
• Age 13 – 19 years
• Physical impairment – cerebral palsy, polio, other
orthopaedic impairments
• Excluded: severe cognitive impairment, diagnosis
of autism, single-sensory impairment (vision,
hearing), severe dysarthria leading to unintelligible
speech
Methods – Data collection
• Focus group discussions (FGD) with non-disabled
peer group
• Individual interviews with parents
• Focus group discussions with AWD; some
individual interviews if requested
• Photography task with the AWD
Phase 4: Meeting with
AWD, parents and
agency representatives
to discuss preliminary
findings
Phase 1: Agreement by
participating agencies;
recruitment of AWD and
parents; interviews with
parents
Data collection phases
Phase 3: Photography
task with AWD; FGD
and interviews with
FGD
Phase 2: Recruitment
of peer group; FGD
with peer group
Photography task
• Each of the 37 AWD were provided with disposable
cameras
• Basic technical instructions were discussed
• Asked to take pictures of things that:
–
–
–
–
Made them happy/gave them pride
Made them sad/disappointed
Made them angry/upset
They wanted to change/make different
• One week to take pictures, followed by group discussion
Photography task
• During the first FGD, AWD provided with the
opportunity to talk about their pictures with each
other and the researcher
• Used this as a method to facilitate discussion
amongst the adolescents
Methods – Qualitative data analysis
• Data analysed using a phenomenological approach
• Three transcripts (chosen at random) read independently
by GK and SW
• Themes identified, discussed and agreement reached
• Using this preliminary list of themes, rest of transcripts
were analysed by GK
• Themes and relevant quotes reviewed by SW; discussion
and revision if necessary
• Used NVivo 7 software to aid analysis
• First round resulted in 8 parent nodes and 38 child nodes
Analysis – next steps
• Further analysis led to the emergence of 4 key
themes, which formed the Model of Inclusion and
Participation
Model of Inclusion and Participation
That is Shobha’s walker. Walking with
the walker makes her sad because she
doesn’t want to walk with walker. She
feels sad because she’s having disability.
-from MI AWD
So this photo, she feels very sad to
look at this boy. Because though he is
young, it is the age for him to go to
school. But because his family
background is poor, he won’t go for
the school. He sells this fruit.
-from APD AWD
Right now, I am living in middle class.
I have aim for a luxury life.
–from MI AWD
I want to be a good girl and want a
nice job to help my parents and live in
good status.
–from MI AWD
Facilitator: Which is your sister?
Participant: The one sitting in the middle with
the bag. She likes to sit here in her little shop.
In our Indian culture, it’s very rare to see our
sisters. So when her sister came and sat in the
shop, she was very happy to see her and to
visit with her.
-from APD AWD
See, they don’t really know what disability is, really.
To them, a disabled person means, he can’t do
anything. That’s the attitude.
This is embarrassing to us, when others overhelp. It
makes me feel like I cannot do anything. It will be
uncomfortable for others, that’s what they say. To see
us…
-from SSK AWD
In school, when they have sports competition,
teacher says ‘You can’t do because you have a
disability’ and they won’t let her take part in
the games.
In school, they won’t allow her to participate
in any playing or stand up. They tell her no,
because she has a disability.
-from MI APD
Here is very dirty road and road
is not good for her to walk also,
so …she took photo.
- from APD AWD
Steps…but those steps don’t
make me angry, but the idea
makes me angry. … Most [video
game arcades] are located at the
top of stairs so I get angry
because I can’t go there.
-from SSK AWD
If you see the big McDonald’s in
India, they don’t have a ramp. Even
though they are supposed to have a
ramp. And if you see the restaurants in
America, they do have a ramp,
because the law there insists on
having a ramp. Whereas in India, they
don’t insist on having a ramp – why
would they want to waste money? As
long as no one makes them put in a
ramp, why would they?
-from SSK AWD
Key Findings
Key facilitators of participation
• Strong belief in themselves and their ability to
achieve success (Personal Factors)
• Supportive relationships with parents and siblings
and awareness of this support (Interpersonal
Relationships)
• Friendship (Interpersonal Relationships)
Key barriers to participation
• Physical impairments and mobility restrictions
pose barriers to participation in recreation and
leisure activities (Personal Factors)
• Negative attitudes and lack of understanding
about disability amongst members of community
and general public (Interpersonal Relationships)
• Physical environment (lack of access, poor
environmental conditions) (External Factors)
• Poor enforcement of existing disability legislation
(External Factors)
Adolescents and their parents – similarities
and differences
• Educational goals
– Parents supportive of goals for further education; some
gender differences
• Employment goals
– Parents willing to support their AWD in achieving
employment; AWD more specific in their goals
• Looking to the future
– Parents more concerned about future, particularly
finances and marriage/family
Key recommendations
• Provision of support for parents of AWD
• Enhancing the self-advocacy skills of AWD
• Providing AWD with appropriate means of
expression for their views and opinions
• Improving how quality of life (QOL) is measured,
and how the information is used in service
provision
Some suggestions for further research
• The role of facilitators and barriers to participation
in the successful transition to adulthood for AWD
• The role of mothers
• Sexual health education and awareness amongst
AWD
• Social isolation among AWD from higher SES
Thank you! Questions?