The

social inclusion of
children with special needs
and disabili4es in Uganda
Children with special needs and disabili4es in
Uganda
Despite a favourable policy context and the availability of suppor6ve services for children
with disabili6es in Uganda, the majority of children with special needs do not enjoy their
rights to survival, development, protec6on and par6cipa6on. Due to the s6gma associated
with disability, children are o>en completely excluded from society, thus preven6ng them
from accessing any social interac6on.
It is es6mated that 2.5 million children in Uganda live with some form of disability (12% of
all Ugandan children) and that only 6% of children with disabili6es in Uganda complete
primary school educa6on compared to 50-75% of typical children (UNICEF). Children with
disabili6es are among the most marginalised and disadvantaged groups of Ugandan society.
Children with special needs experience mul6ple forms of exclusion including access to basic
resources such as educa6on, healthcare, social and legal support systems. In addi6on, they
are confronted with nega6ve aNtudes and o>en experience discrimina6on, violence and
abuse. HumaneAfrica currently supports a number of children with special needs who have
been hidden away from society and have had no social interac6on for the majority of their
lives. The main barrier to these children receiving therapy, support services and educa6on is
the aNtude of the community, which results in families of children with special needs,
hiding their children.

About HumaneAfrica
HumaneAfrica is commiRed to ensuring protec6on and support for the most disadvantaged
and vulnerable children in Uganda, especially those living in extreme poverty, those exposed
to violence and those with disabili6es. HumaneAfrica works with communi6es in Uganda to
eliminate harmful prac6ces which either harm or have a nega6ve impact children.
HumaneAfricas grass-roots, social norms approach ensures that communi6es take
ownership of their ac6ons towards children and both understand the impact these ac6ons
have on children and also nd the solu6ons within their own communi6es to abandon these
harmful prac6ces.

Social inclusion of children with special needs and

disabilities
The star6ng point for social inclusion of children with special needs and disabili6es is
loca6ng children who are excluded from society. HumaneAfrica currently supports a number
of children who have spent the majority of their lives hidden from society. Their neighbours
have been aware that the child exists, but have never seen or interacted with these children.
The following are some examples of children who have been excluded from society, now
supported by HumaneAfrica.
Nicholas

HumaneAfrica rst met Nicholas in May 2013 when he was 14 years old. Nicholas had not
been out of his two room house for 11 years, since his mother discovered he had
developmental delays. Nicholas spent his days and
nights lying in the same posi6on, with no s6mula6on.
He was severely malnourished and his body was locked
in the fetal posi6on. He gave no reac6on to sound or
light. HumaneAfrica arranged for an assessment and
found that Nicholas had cerebral palsy. An extended
stay in a nutri6onal centre was arranged and once
Nicholas was strong enough he returned home and
began physical therapy in an aRempt to loosen his
joints so he could sit upright. During this period
HumaneAfrica worked with Nicholas mother to bring
her to understand that Nicholas was not a curse on her
family, an opinion imposed on her from her
community. HumaneAfrica then arranged for a
wheelchair so Nicholas could safely sit upright and eat
in that posi6on. Due to the lack of nutri6on and
s6mula6on over most of Nicholass life, it will take
some 6me before the benets of the nutri6on and
therapy are visible. However, Nicholas is now able to
make some verbal sounds and eye contact is emerging.
He spends a few hours each day out of the house and
has physical therapy sessions once every two weeks.
Nicholas rst day in his wheelchair
Jamilah

Jamilah is 11 years old and lives with her mother in a small single-roomed house. Her father
le> with her two siblings when Jamilah was 2 years old, saying she was an outcast. The
family is extremely poor and are only able to eat when Jamilahs mother has money.
Jamilah has cerebral palsy and uncoordinated movements which her mother says has make
it dicult for Jamilah to be outdoors without aRrac6ng unwanted aRen6on. When
HumaneAfrica rst visited Jamilahs house in October
2014 she was locked in the room. HumaneAfrica sta
waited for several hours for her mother to return
from the eld where she was working, digging earth
for a landowner. Jamilah was lying naked on an old
soiled maRress and her sporadic movements resulted
in banging and scraping the walls. The scratch marks
and blood from Jamilah arms and legs were visible on
the walls. Jamilah was unable to sit or support
herself. She had spent the majority of her life locked
in this room without any form of social interac6on.
Her mother, while extremely caring, was not
prepared to take Jamilah out of the house for fear
she would be humiliated and laughed at.
Jamilah now aRends physical therapy twice and
month. Thanks to support from UNICEF Uganda and
the Ministry of Gender, Labour and Social
Development, Jamilah now has a wheel chair which
Jamilah in her wheelchair provided in
enables her to sit upright and the harness keeps her
partnership by the Ministry of Gender Labour
secure. Her wounds have healed and a>er nutri6onal
and Social Development
treatment she has gained weight. She enjoys music
and responds to her mothers signing.

HumaneAfricas approach
Once children have been located and therapy and assis6ve devices are introduced,
HumaneAfrica works with the family or caregiver to ensure they are fully suppor6ng the
child. O>en when HumaneAfrica rst visits a child who has been hidden away from society,
the caregiver does not show aec6on
towards the child. They do not speak
directly to the child and o>en talk about
the child as if they were not present.
Once the therapy and support begins
however there is o>en a no6ceable
change in behaviour towards the child.
The caregiver sees, perhaps for the rst
6me, someone showing love and care to
their child. Physical therapy is especially
aec6ve as the therapist may massage
the child while speaking directly to them,
showing respect and care. HumaneAfrica
has seen a signicant dierence in the A home-based physical therapy session where the caregiver
caregivers response to the child before is also trained to conduct the therapy
and a>er these interac6ons with
therapists. What occurs in the room is a
subtle change in the social norm. Prior to the therapists interven6on, it was acceptable to sit
away from the child and not involve the child in discussions or give them aRen6on. During
the therapy session however, this norm is challenged by an individual who shows care and
concern and communicates directly with the child. Over 6me, this posi6ve norm of caring
and showing aec6on is adopted by all those in the room. At this point HumaneAfrica looks
towards the wider community with a view to changing the norm which makes it acceptable
to discriminate and abuse children with special needs.
Social norms
The theory of self enforcing social conven6ons has provided insight into why harmful
prac6ces exist. The theory uses game theore6c models to explain behaviour in the presence
of social conven6ons and social norms. It highlights that when a social norm is in place,
decision making is an interdependent process in which a choice made by one family is
aected by and aects the choices made by other families; it is a result of reciprocal
expecta6ons (UNICEF, 2010).
The decision to stop a harmful prac6ce, such as discrimina6ng or abusing a child with
disabili6es, must come from within a community and the most successful approach is to
empower communi6es to decide for themselves to abandon the prac6ce. Through the social
norms approach, and more specically through respeccul educa6on, dialogue and
workshops, community members are encouraged to re-evaluate their current beliefs and
aNtudes in order to bring about posi6ve change.

Methodology
Changing social norms is key to elimina6ng the s6gma associated with disability in Uganda.
Research shows that throughout Uganda, this s6gma results in children with disabili6es
being excluded from society,
o>en being locked away
without access to proper
nutri6on, social interac6on,
educ6on and healthcare. The
abandonment of this harmful
prac6ce is achieved through
local communi6es ini6ally
aRending workshops and
establishing an open and
honest environment where the
issue of disability can be openly
discussed.
HumaneAfricas approach is
based around the community A workshop at a local school for the social inclusion of children with
acknowledging that this s6gma disabiliCes
exists and has an adverse eect
on children with special needs
in their community. Through workshops, consis6ng of facilitated group discussions, the
community establishes that every child with or without disability has the same rights to
social inclusion within the community.
Once the community makes the link between their aNtude towards a child with a disability
and a child who has been abused or excluded from their community, the community has the
possibility of joining together to collec6vely abandon this harmful prac6ce. HumaneAfricas
role is to give communi6es the opportunity to discover this link for themselves and support
the community in designing and implemen6ng ac6vi6es to collec6vely abandon this harmful
prac6ce. HumaneAfrica has a presence in a community for six months working with a family,
school and community to eliminate the harmful prac6ce of discrimina6on and abuse of
children with disabili6es.
Social inclusion of a child with special needs - case study
HumaneAfrica was asked to visit Sanyu in November 2014 a>er her mother had seen
HumaneAfricas involvement in her community during
a project to eliminate child mu6la6on, another
harmful prac6ce aec6ng children in Uganda. Sanyu
was nine years old at the 6me and had been
diagnosed with cerebral palsy. Sanyus father le> the
home when Sanyus condi6on became evident, when
she was about three years old. He claimed that his
side of the family do not have children with
disabili6es and therefore this child could not be his.
Sanyus mother had no income or property and went
to live with Sanyus grandmother. Sanyus mother is a
labourer, she digs crops for landowners.
On mee6ng Sanyu for the rst 6me, it was clear that
Sanyu was a happy inquisi6ve girl. She did not walk,
but crawled around the oor and was interested in
her surroundings and had good eye contact and an
engaging smile. She had infected soars on her knees
and elbows from crawling around her house. She was
not locked in the house during the day, as her
Sanyu
grandmother was able to look a>er her, however she
did not have access to healthcare, educ6on or social
interac6on with the community. Sanyus vocabulary consisted of only one or two words, she
was able to hold a pencil and was interested in sketching.
Sanyus immediate needs were to treat the sores on
her elbows and knees and nd a way for her to move
around without crawling. HumaneAfrica arranged for
physical therapy to start immediately and Sanyu was
measured for knee, ankle and foot supports so she
could start learning to walk. She was also measured
for a wheel chair.
A>er a few visits, it became clear that Sanyus mother
was prepared to face the community and challenge
the s6gma associated with having a child with special
needs. It was agreed that Sanyu should aRend school.
This involved registering her, buying a uniform and
acquiring a wheelchair so she could travel to and from
school.
In order to remove the s6gma associated with Sanyus
diagnosis, HumaneAfrica arranged to start the social
inclusion program with her local school. The ini6al
workshop was designed to bring the students and
most especially the teachers to acknowledge that
children with disabili6es had the same rights and
Sanyu walking with her knee, ankle and foot worth as children without disabili6es. This was
supports achieved by running a workshop in the school which
included small group discussions based on case
scenarios involving children with disabili6es and the
 reac6ons they received from community
members, fellow students and teachers. The
purpose of these small group discussions was to
illustrate that aNtudes towards children with
disabili6es are key factors as to whether these
children became part of the community or are
hidden away. Small working groups were then
formed with students and teachers to design
and implement messages to the wider
community. These messages are designed to
bring the en6re community to collec6vely and
visually abandon the prac6ce of discrimina6ng
and abusing children with disabili6es.

Sanyu aEending her local school

Summary
Support services, healthcare and educa6on are available for children with special needs and
disabili6es in Uganda, however due to the s6gma associated with disability, these services
are generally not accessed and children with special needs rarely experience social inclusion
within communi6es.
The harmful prac6ce of discrimina6on and
abuse towards children with disabili6es o>en
results in parents and caregivers hiding their
children from society. However, once this
nega6ve social norm has been replaced by the
expecta6on that children with disabili6es will
have equal access to community resources,
there is an opportunity for children with special
needs and disabili6es to full their full
poten6al. Therefore, the social inclusion of all
children with special needs and disabili6es in
Uganda will become a reality only when
communi6es openly and collec6vely abandon
the harmful prac6ce of discrimina6ng and
abusing children with special needs.

2015
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