This work is based on my personal experience and started during one of my trips to
Kenya when I came across the campaign developed by World Friends and CISP about
the conditions of the mothers with children with disabilities in the slums of Nairobi1
.
Children with disabilities in the slums are the last of the last. Disability not only
compromises their development, but marginalizes the families where they live and often
divides them. The diagnosis of mentally or physically impaired children is likely to be a
traumatic experience for their families. Having a child with disability tends to influence
the lives, emotions and behavior of family members. Most parents have expectations to
raise a normal child, and hold hopes and expectations for planning the future of the
child. In contrast, parents whose child has some impairment, may experience dramatic
changes in their social life, plans, work life and their financial status.
It is under these premises that I started to work on this thesis that aims to bring to light
the condition of people with disabilities in Kenya. The reason for my dissertation and
how it was developed is to give voice to the “voiceless”, to denounce a situation that I
saw with my own eyes and that is almost impossible to forget.
The work is divided into five chapters. Charter 1 offers an historical overview of the
country, providing data regarding the population and the socio-economic situation in
Kenya. I also mention the traditional beliefs because they may influence how a person
with disability or his/her family is treated. In fact, a lot of people in Kenya believe that
disability can be caused by curse and that, for example, laughing at people with
disabilities could cause an individual to have a child with a disability himself or herself. This chapter contains a short description of the political history of the country and birth
of first associations dealing with disabilities, in order to contextualize the themes
discussed later on and to shed light on the future government plans to be implemented
across the country. Furthermore, I describe the critical areas that I visited and that are
more significant for my analysis: some Nairobi's slums and the rural area of Nyahururu.
Charter 2 focuses on different ways of defining what disability is and the prejudice and
discrimination resulting therefrom. I submit that the use of appropriate language is
important to the process of building respectful relationships, and the choice of
terminology can reflect the way in which disability is perceived. I also analyze other
concepts strictly related to disability in the Kenyan context, such as poverty and stigma
and how they influence each other. Finally, I illustrate the different models approaching
of disability, starting from the “medical model” where the person is viewed as weak and
needy and the society is not seen as having any underlying responsibility to
accommodate people with disabilities; passing through the “social model” that sees
disability as created by the impact of environmental factors (or societal barriers); to
finish with right-based approaches which tend to regard the social exclusion of people
with disabilities as a denial of their basic rights. Chapter 3 offers a legal framework on
the rights of people with disabilities from both national and international perspectives. I
also make a short analysis of the report on implementation of the Convention on the
Rights of Persons with Disabilities submitted by the Kenyan government in 2011. In
particular, the chapter focuses on the notions of legal capacity and independent living
and on how stigma associated to mental disabilities results in affected people being
denied a wide variety of economic, social, cultural, civil and political rights. Chapter 4
is centered to children's right to education and in particular to access to education for
children with disabilities or special needs. The original definition of the right to
education - as agreed by the international community - is contained in Article 26 of the
Universal Declaration of Human Rights of 1948. From here, I analyze the legislative
development process of the right to education, in national and international instruments.
The chapter also provides an overview of the Kenyan education system and the role of
special education. Actually, I thought it was important to make a distinction between
special, integrated and inclusive education and how teachers and parents perceive them.
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Chapter 5 is a case study based on some interviews I made between April and May
2015. The interviews were made thanks to the following associations and NGOs
working on the field: World Friends, DeafAid and Saint Martin-CSA. Twenty five
interviews were conducted with family members of people with disabilities to further
understand the challenges disabled persons face both in a rural and urban environment:
namely in Kibera, Mathare, Korogocho, Babadogo (slums of Nairobi) and Nyahururu.
These interviews provided firsthand accounts of problems and challenges faced by
people with disabilities and their caretakers. Unfortunately, I did not have the chance to
interview any father. Twenty six interviews were conducted with volunteers, staff
members and community members in the mentioned areas to understand the
community’s perception of disability. The community interviews also provided
evidence of the social and cultural stigmas regarding disabled people that have
developed over the years. Investigating these stigmas helped to further understand the
cultural and social discrimination against individuals with disabilities. Finally, I
interviewed also ten teachers from different schools, but I did not have the chance to
meet them and see the schools.
Since when I visited Kenya and grew aware of the situation I started to reflect on the
fact that the rights of persons with disabilities, and especially children, were violated
every day and that a country like Kenya (that considers itself a democracy) had still a
long way to go to achieve basic standards of equality and human rights. Kenya has one
of the best democratic and inclusive constitutions in Africa. However, discrimination,
deprivation and segregation are still widespread.
It has to be said that the government has enacted sweeping legislation to empower
people with disabilities through education, access to health care, shelter and
employment. Many people with disabilities in Kenya have eventually occupied
prominent positions in many fields, but in my opinion, this is only a “faceade
inclusion”.The Constitution of Kenya approved in 2010 recognizes in Article 54 that
persons with disabilities are entitled to be treated with dignity and respect and not to be
referred to in a manner that is demeaning, to access educational institutions and
facilities for persons with disabilities, to have reasonable access to all places, public
transport and information, to use sign language, Braille or other appropriate means of
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communication and to access materials and devices to overcome constraints arising
from the person’s disability. Nevertheless, in most urban areas, people with disabilities
live in informal settings characterized by poor living conditions, indigence and illiteracy
(KNSD, 2008). Poverty and disability are inextricably linked; these combined factors
limit access to education, employment, and lead to economic, social, cultural and
political exclusion.
The Kenyan national education system is characterized by inadequate availability of
those structures and facilities that can respond to the myriad challenges faced by
learners with special needs. Talking with some mothers (most of whom were not willing
to open up) I realized that a lot needs to be done. One of them said: “Integrating
children with disabilities is a great challenge. People are not ready to come out of their
comfort zone. They don’t realize that they [children with disabilities] can be good in
school. Some teachers shut their eyes and don’t want anything to do with them.”
I met many parents of children with disabilities who struggle in vain to find appropriate
schooling for them, in the end forced either to educate them at home or leave them there
while they go out to work.
In theory, children with disabilities in Kenya have two choices when it comes to
education. They can attend an integrated school which should enable them to study
alongside able-bodied children. On the other hand, for children with more severe
disabilities, there are schools for students with special needs which cater for their
particular conditions. Parents get extra grants to enable them to pay for tuition.
However, there are no schools for students with special needs near the main slums, and
head teachers of supposedly integrated schools often argue that their institutions lack
adequate facilities to accommodate children with special needs.
Under the Convention on the Rights of the Child and the Convention on the Rights of
Persons with Disabilities, governments around the world, including Kenya, have taken
upon themselves the responsibility of ensuring that all children, irrespective of ability or
disability, enjoy their rights without discrimination of any kind. These two Conventions
bear witness to a growing global movement dedicated to the inclusion of children with
disabilities in community life. Concern for inclusion is rooted in the recognition that all
children are full members of society: that each child is a unique individual who is
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entitled to be respected and consulted, who has skills and aspirations worth nurturing
and needs that demand fulfillment whose contributions are to be valued and encouraged.
Inclusion (and not only integration) requires society to make physical infrastructure,
information and the means of communication accessible so all can use them, to
eliminate discrimination so none is forced to suffer it and to provide protection, support
and services so every child with a disability is able to enjoy her or his rights as do
others. Children with disabilities are disproportionately denied their rights to education,
and this undermines their ability to enjoy the full rights of citizenship find gainful
employment and take up valued roles in society.
(UNICEF, 2013: 2-3). The 2010
Constitution of Kenya makes primary education free to all, yet no study undertaken to
describe the situation of children with disabilities in terms of their rights to education,
confirms the assumption that they are enjoying the same rights as their counterparts
with no disability.
Still, the greatest barriers to inclusion are caused by society not by medical impairment:
social stigma and negative parental attitudes to disability which may arise out of
religious and cultural beliefs play a crucial role. History shows that ignorance, neglect,
superstition and fear are social factors that have exacerbated isolation of persons with
disabilities. The desire to avoid whatever is associated with evil has affected people's
attitudes towards persons with disabilities simply because disability is associated with
evil. Most of these negative attitudes are mere misconceptions that stem from lack of
proper understanding of disabilities and how they affect functioning. Getting a disabled
child is often seen as the result of wrongdoing by the parents, while some may also
think the impairment as the result of a curse or witchcraft. Some people also believe that
disability is contagious, for example that marrying a relative of a person with disability
or imitating or laughing at someone with a disability can cause disability. Poverty and
gender discrimination are the main contributors to the negative attitudes towards
children with disabilities and in many cases aggravate the situation. The main causes of
disabilities in East Africa are related to preventable diseases (like malaria) and to
malnourishment and these mainly affect poor families. In most of these families, the
scarce resources are allocated to able bodied siblings because they are seen as better
performing. Little remains for school fees, transport and other needs of children with
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disabilities. Also, within many families, boys are provided for more than girls. This
places daughters with disabilities in the most vulnerable situation.
The Kenya National Commission on Human Rights' report of 2007 on the Rights to
education for children with disabilities, assessed the extent to which children with
disabilities were accessing the right to education in both rural and urban area. This
study however, does not analyze the extent to which children with disabilities enjoy
their rights to education in the slums. The exact situation of children with disabilities
has not been systematically researched. This lack of information, accurate data and
discussion has violated their inherent right to education and threatens the educational
goals set by Vision 2030. For this reason, my thesis seeks to examine the situation of
people with disabilities in Kenya in general and in vulnerable areas of the country in
particular. Not only the slums are penalized but the difficulties significantly increase if
we move to the rural areas too. Here, poor access to basic services also exists for
“normal people”, not to mention those with disabilities, especially physical
impairments. In particular, during my researches, I have come to know the Saint Martin
a religious grassroots organization based in Nyahururu, that has a Community
Programme for persons with disabilities. What struck me was its philosophy: people
with disabilities and normal people can and should live together. In fact, in Effatha and
Betania, people with intellectual disabilities live together with people who come to
assist. The family-like environments are supported by the local community of
volunteers. In 2014, 400 volunteers were active in the field assisting beneficiaries and
reaching out to other people in the community; 39 community volunteers and 19
Community Rehabilitation Workers were given training sessions on various technical
aspects to enhance their work with the beneficiaries. 1005 children with disabilities
worked with the programme during the year. 264 new children with disabilities were
identified and enlisted for programme support. Out of these, 162 were screened and
rehabilitation plans developed to assist them. These are just few numbers that describe
the dedication and efficiency of the Saint Martin, of its volunteers and, by extension, of
the whole community. The experience of Saint Martin can be taken as an example of
community involvement in the daily commitment to the inclusion of people with
disabilities.