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Sheila Chepkoech (Kenya)

I come from Africa, a continent that is very rich in many ways. We are very wealthy in non-material things such as happiness, laughter, joy, contentment, generosity and love. We are also wealthy in natural resources, breath-taking scenery and fertile land. However, we are famously known in the Western world for poverty, disease, corruption and war. The truth is we are more than that and there is our own side of the story that is not often told. Although suffering, pain and poverty exist among us, just like they do in many other societies around the world, what is often left out is the resilience, the passion and the sacrifice by which the majority of the African people rise amid the difficult circumstances around them: the genuine joy and laughter that emanate from our hearts regardless of the challenges surrounding us. And most importantly the hope that is always burning in our hearts and the courage to dare the impossible, which are often omitted from the narrative.

I am a 28-year-old, born and raised in Kenya, an east African country with a population of about 43 million people. My childhood started out very well as I lived with both of my parents and my younger brother. However, when I was 11 years old, my parents separated and my mother moved us from Kitale, a small town located towards the western part of my country, where we lived then, to the capital city, Nairobi. The move in itself was a big change: Kitale is a very small town of about 100,000 inhabitants while Nairobi is a big city, with over 3 million inhabitants, and is full of activity. The majority of the government offices and the headquarters of notable international organisations such as the United Nations (UN) are located in Nairobi.

As a child, going through my parents’ separation and moving to a big city was a challenge that became a defining moment that shaped my life. Everything happened very rapidly without anyone explaining to me what exactly was going on. You see, in our society, children are often not consulted or offered an explanation on events going on around them as they are considered to be too young to understand. In one week, my brother and I were moved to Nairobi and had to live with relatives for several months before my mother could join us. We had to change schools, make new friends and adapt to the city, and at this point, the future looked scary and uncertain. Although I was deeply saddened by my parents’ separation, I chose to focus on how I was going to make my life better. I made a decision that my life would not be defined by my circumstances but instead, I would choose a path of excellence. From that moment on I took every challenge that came my way as a motivation to aim higher and to push harder in life.

Life in the city was never easy and, since my mother was the only source of income for our family, we always had to sacrifice a lot as there was hardly ever any money to afford any form of luxury. It is the financial difficulties that I faced in my life which inspired me to want to help other people, because I always felt I could identify with them. As a result, I have chosen development work as a career as I truly believe it provides me with a broader scope in which I can help people.

One of my greatest satisfactions is to make people’s lives better, no matter how little the impact might be, and as a result I enjoy doing volunteer work. One of the first organisations that I volunteered with was Compassion International, a Christian organisation that sponsors the education of children from poor backgrounds from kindergarten to university. In Compassion, I was a facilitator during their holiday camps organised for the children, usually running for a week. I am also one of the founding members of Tuwakuze Africa, a youth-led initiative now registered as an association, which aims at affording access to quality education for children from underprivileged backgrounds.

I have also worked both as a volunteer and as an intern on two social projects run by an Italian NGO called European Committee for Training and Agriculture (CEFA Kenya)². The first project that I worked for was dubbed ‘Arts against Poverty’, and worked with a group of 40 selected artists working in different media. The artists went through various workshops to equip them with marketing and communication skills, and they were provided with platforms to showcase their art as well. The other project that I worked for was ‘Improving the Juvenile Justice System’. The aim of this project was to bring about much-needed reforms within the juvenile justice system in Kenya. I got the opportunity to interact and work with children living in juvenile justice institutions in Nairobi. Together we were able to carry out a project called ‘Face to Face’, a collaborative venture between Kabete Rehabilitation School and Casumaro School, Italy.

The aim of this project was to familiarise the children from the two different countries and cultures with the lifestyle and perspectives of the other, through exchanging videos highlighting their lives and questions on things they would like to know about the children from the other school. I organised and guided discussions on children’s rights with 15 boys from Kabete Rehabilitation School to create content for filming. Going through the United Nations Convention on the Rights of the Child was an eye-opening experience both for me and for the boys I was working with. This is because these rights are seldom talked about and most of the children were not aware that they have rights. For the boys it was even harder as learning these rights brought the realisation to most of them that their rights had been denied in one way or another.

Children’s rights, and the awareness of the lack of them in my society is what informs part of what I have done so far and what I would like to do in future. Rights that may seem simple in other societies such as access to education, the right to good living standards, the right to good health, and the right to special care and support are a rare commodity for a huge number of children in Kenya. Acknowledging that I had access to these rights during my childhood makes me realise how fortunate I am, and it is hence my desire to see that other children in my society are accorded the same. It is this background that informed my choice of where I wanted to undertake my community service when I was pursuing my undergraduate degree.

I had the opportunity to do my community service at a rehabilitation centre for children with disabilities called Total Rehab Centre for the Disabled, located in the Kasarani area of Nairobi. During and after my experience in the Centre, my desire to help, especially those who are unable to stand up for themselves such as the disabled, grew immensely. Though we did not communicate in words, as many children could not speak, our actions and reactions enabled us to understand one another. We formed a bond that I will forever cherish in my heart, and it is for this reason that I feel compelled to share some of my experiences.

The Centre was started in 2009 and hosts 28 children with five employees, including the founder, Ms. Teresia Njeru. It sits on about half an acre of land (about half a football pitch or eight tennis courts). It has one main house, two separate structures that act as a therapy room and a classroom, and a cow shed. The main house is where the children spend most of their time. It has a living room, three bedrooms, a toilet, a bathroom and a kitchen. Since the number of bedrooms is less than the number of children being hosted by the Centre, the living room acts as a bedroom too for some of the children. There are beds in the living room for this purpose. The walls are cream in colour and plain. The home was not designed to host disabled children and due to limited funding, not much has been done to make the home more suitable for the children.

The idea behind Total Rehab came after a survey on children with disabilities done in Nairobi in 2009³. Through the survey it was revealed that most children with disabilities were stigmatised and some were locked up in the house. Disability is still believed to be a curse in some communities in Kenya whereby instead of being viewed as something that can occur naturally, it is credited to some evil spiritual forces or as a negative consequence or punishment to the parents for some shortcomings in their spiritual lives. In addition to that, disability can also be viewed as a result of sorcery. Because of this, some parents are afraid to let the public know that they have disabled children, since they will be perceived as people who are experiencing some sort of spiritual misfortune. Most families therefore feel ashamed of the fact that they have disabled children and hence prefer to hide them. Most of these beliefs come from lack of information and exposure. The other reason for this is poverty in the community. Disorders such as autism and cerebral palsy are not widely known, especially among poor people, hence they do not know how to handle these cases when they have children with these conditions. The expenses that accompany bringing up a disabled child are also a hindrance to parents, thus causing them to hide their children.

Nevertheless, I would like to point out that there are institutions that champion the rights of disabled children in Kenya and they are key in creating awareness. The Kenyan government has also made efforts to ensure that the rights of these children are upheld through the formulation of policies that ensure the well-being of disabled children. For instance, the Kenyan constitution is very clear about the rights of persons with disabilities. It states that a person with any disability is entitled to be treated with dignity and respect and to be addressed and referred to in a manner that is not demeaning; to access educational institutions and facilities for persons with disabilities that are integrated into society to the extent compatible with the interests of the person; to reasonable access to all places, public transport and information; to use Sign Language, Braille or other appropriate means of communication; and to access materials and devices to overcome constraints arising from the person’s disability.

Ms. Teresia Njeru, a Kenyan lady in her 30s, was among the people conducting the survey, hence she felt the need to act, and as a consequence started the home in 2009. She is originally from Meru County, in eastern Kenya. Meru County has a population of about 1.3 million inhabitants who predominantly speak Kimeru in addition to the two main languages in Kenya, that is, Kiswahili and English. Meru Town acts as the administrative and commercial centre of the county with the main activities being agriculture and commerce. Currently Ms. Teresia lives in Nairobi, the capital city, where Total Rehab Centre is located. She is a teacher trained in special needs education and always had a passion for helping children with disabilities. Her decision to start the Centre was a selfless act, especially considering that she did not have any guaranteed source of funding, only her strong conviction that she needed to help the children. She is an outstanding lady with a big heart. From the moment I met Teresia, her selfless love for the children was evident. It is impossible to interact with her and fail to be inspired and challenged to live for others more than we live for ourselves.

The majority of the children hosted by the institution have cerebral palsy, a group of disorders affecting a person’s ability to move and which can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. The Centre caters for children (from 3 to 25 years old) with special needs and parents/guardians of affected children and also provides information to the general public and learning institutions. The mission of Total Rehab is to empower children with disabilities with skills and competencies to enable them to achieve optimal performance in their daily activities through provision of quality care and rehabilitation services. They achieve this through providing therapy, promoting awareness, and advocacy. Services which the Centre aims to offer include: day-care and outpatient services, specialised medical support, boarding services, nutritional support, occupational therapy and physiotherapy, among others.

The Centre mainly offers residential services rather than outpatient services to the children, hence all of the children currently live in the Centre. Their stay follows the Kenyan school calendar where the children are hosted throughout the year with about four weeks’ break in each of April, August and December. During the break, the children who have responsible parents or guardians are usually picked up and they spend this time at their homes. Those with no parents or responsible guardians remain at the Centre.

A normal day at Total Rehab Centre begins as early as six a.m. with preparation of breakfast. Due to limited staff members, everyone fills in when it comes to taking care of the children. As breakfast, which is usually porridge to feed more than 30 people, is prepared the children are woken up one by one to take a bath. Most of the children cannot bathe themselves so they are assisted by their caregivers. As with most activities in the Centre, bath time is not an easy time since the bathrooms are not designed for people with disabilities. This means that the caregivers have to support most of the children as they wash them. Bath time usually lasts for about two hours. After the children have had their bath and are dressed, breakfast follows. Most of the children need help to feed themselves and at times it may take up to an hour to feed one child. It was during these meal times that I was able to establish a bond with the children. I learnt patience and got the chance to give absolute care to someone who needed it. I also learnt to be sensitive to the children and to listen to them through observing their reactions and understanding how they communicated. For example, after half an hour of feeding I would think a child had had enough but, once I took the plate away, they would begin to cry meaning they had not had enough.

Feeding usually lasts until eleven a.m., depending on the number of volunteers present. As the children are fed, there are some people doing the laundry. Since the Centre does not have a washing machine, all the children’s clothes are hand washed, an activity that could take up to three hours daily. The children are then carried outside to bask in the sun as their rooms are cleaned. By this time, lunch is already cooking. At about one p.m. meal time begins again and goes on until about 2:30. There are some days during the week when the volunteer physiotherapist comes to have sessions with the children. Dinner begins at six p.m. and by around eight p.m. the children go to bed. The following day the cycle continues. In the event that one of the workers is absent, a day’s programme can be immensely affected since the human resources are very limited. When there are volunteers, things run smoothly, but lack of them throws the Centre into chaos, in that you have longer meal times, which delays every other activity.

I helped with preparing food for the children, feeding them, cleaning the rooms they stayed in, washing their clothes and, at times, simple things like getting them out of the house to go and bask in the sun and playing with them. Starting out as a volunteer, like most people I thought I was going to help the children, however I feel like they helped me more than I helped them. I learnt immense lessons from them. Their simple acts of kindness and the resilience by which they fight the many challenges they face has taught me to appreciate life as it is and to be grateful for whatever is going on in my life. I learnt how to be happy and content with everything I have or do not have. Despite the great challenges that the children faced, there was no day that I would not get a smile or a laugh from them. I often found myself asking, ‘If these children can afford to be so happy with all the challenges they are facing, what reason do I have to be unhappy?’ So I resolved, instead of looking at what was not working in my life, that I would choose to count all my blessings and see how I can spread the joy to those around me.

I learnt unconditional love from both the children and those who take care of them. The moment anyone walks into this home they are received with warm embraces from the children, with pure excitement and joy. The children care for each other as brothers and sisters. It was always a delight to see how one child would soothe another when he or she was crying. Whenever a child fell sick, sadness was felt by everyone; in fact, I too found myself calling the home to check on the child’s progress. I also understood the fact that it does not take much to be of help to someone, and that simple acts of love can go a long way in changing lives. There is a world that exists out there that needs my help no matter how little it is. Every single time I left Total Rehab, one of the staff members would express her gratitude because she felt like what we did as a team was very helpful to them. I still try to remember this even now when I am miles away from my country.

In addition, I was challenged by the immense sacrifice that Teresia and her team have made to ensure that they take proper care of the children. At the time I was volunteering, Teresia had not been home for the last two years simply because she could not take a day off, as she has a limited number of staff. Her colleagues work for little or no pay, yet they diligently show up every day to provide care and support to the children. I learnt humility and patience. There are times that it would take me up to an hour to feed a child because he or she experienced difficulty in feeding. All this time spent with the children created a bond with them. It was therefore very sad when I learnt about the demise of two children shortly after I left the institution. The cause of death for one of the children was a combination of leukaemia and asthma, while the other was a brain condition that the doctors were eventually unable to treat.

However, apart from the positive lessons, I also felt and still do feel angry at society for not caring enough to do more for children with disabilities. My anger partly stems from the knowledge that some of the children at Total Rehab were abandoned and neglected by their parents. Furthermore, some children were born as a result of rape committed against women with mental disability. Women with mental disabilities face more risks in societies where mental illness is not a subject of discussion or where people with such challenges are not well taken care of. This makes them vulnerable not only to sexual harassment, but also to emotional abuse as they do not have someone to defend or protect them. Eventually, some fall prey to men who have no value or respect for them and see them as an opportunity to quench their lust. This matter is seldom openly discussed, so there are limited channels for addressing it.

As I write now, the Centre battles limitations. Al-though it is meant to be a rehabilitation centre for children with disabilities, it acts more like a boarding facility. This is because it mainly provides accommodation, feeding programmes and some medical assistance. The Centre does not have sufficient equipment to provide proper therapy and the equipment that is present is only used during the very limited therapy sessions that the children receive. It pains me to know that most of the children there could get better with adequate and consistent therapy but this is not given to them – not by choice but due to insufficient resources. There are two volunteer physiotherapists affiliated with the institution, however they come at separate times meaning they have all the children to handle in a limited time. The result is that the children end up receiving therapy once a week, which is inadequate. In addition, most of the parents have abandoned all responsibility for their children, leaving them to Teresia, and this includes medical care in the event that a child falls sick or is injured. With limited funds, Ms. Teresia is unable to afford quality medical care for the children.

I grew fond of all the children in the Centre but I became closely attached to one of them, Mark⁴. Mark, like most of the children in the Centre, has cerebral palsy. He was abandoned by his parents after they discovered he was disabled. I was told that when he came to the Centre, he had huge problems with feeding because he was born tongue-tied, a condition known as ankyloglossia in medical terms. This comes about when the tissue that connects the floor of the mouth and the bottom of the tongue is too short and tight, causing the movement of the tongue to be restricted. Mark was, therefore, malnourished and Ms. Teresia was not sure he would survive. She took him to hospital and the condition was rectified. Currently he feeds very well and is a very healthy boy. However, Mark cannot walk, neither can he talk, and the saddest part was knowing that he would have been able to do both of these things had he received consistent physiotherapy and special shoes to help him learn how to walk, as well as speech therapy. Affording this kind of help for Mark has been impossible due to the lack of resources that the Centre has. The home in which the children are hosted was provided by a well-wisher who rents it to them at a reduced price. The house is not wheelchair friendly, yet there are several children who are in a wheelchair. The children receive very minimal conventional education and vocational training to facilitate their future reintegration into society, despite the fact that this is one of the services that the institution wishes to offer. This means that the Centre currently provides temporary and immediate solutions such as food and shelter but falls short in addressing long-term issues such as equipping the children with some useful skills. My hope for the Centre is that it will be able to provide these kinds of services in the future. For it to do so, it needs both financial support and human resources.

I have seen the Centre function through the support of well-wishers from the Kenyan community. The majority of the people who make generous donations to the Centre are Kenyans who do not necessarily come from the wealthy class, but are good-hearted, well-meaning individuals who through collective effort are able to mobilise resources and help out. Total Rehab Centre is not the only example of initiatives started by Kenyans and funded by fellow Kenyans. This gives me much hope, because I truly believe that for countries such as mine to tackle the issues facing them, there is need for local capacity-building. Here I mean that we need more initiatives started and supported by the local population, thus challenging the mentality that help can only come from outside i.e. Western donors. When we as Africans take the leading role in helping each other, we will be challenged all the more to work harder. Locally-supported projects increase accountability, as the people will always be keen to know that their funds are being channelled in the right way and not misused. It is my hope that more and more people will be at the front line in spearheading and supporting such initiatives.