Stevie Wonder, America’s finest Musician with a disability once said that ―Just because a man lacks the use of his eyes does not mean that he lacks vision. These are the opening remarks made by the Principal Secretary in Charge of Coordination, State Department of Interior and Coordination Ministry Madam Josephta O. Mukobe; the highest ranking government officer with a disability in the RRepublic of Kenya. I meet her in her office on the 28the floor of Teleposta Towers in Nairobi, and this is the story of her life. Madam Josephta O. Mukobe was born in the early sixties with a congenital disability i.e. a condition that has affected her limbs. The cause for this remains unknown as she has tried to seek medical explanations towards her disability and the scientific field leaves her with more questions than answers. One theory says there was some medicine (thalidomide) administered to pregnant women in the late 50s and early 60s in Europe that may have found its way to Africa resulted in some babies being born without limbs. However this theory does not seem to hold any water because there are children still being born with similar defects despite the drug having been withdrawn from the market decades ago.
Whatever caused her disability is no longer an issue, what is important to her is that she has a condition that must be managed. To do this she has to accept and appreciate herself as a human being like the others and develop a sense of courage, strength and self-determination as she interacts with the environment around her. Despite the disability that has affected bet physical appearance she considers herself as beautiful in her own parameters and believes in enjoying and living life to the fullest. It is true that as a disabled person she needs assistance here and there but she tries to overcome the limitations of her condition and lead an independent life as much as possible.
Being the first born in a family of eight, her parents were eagerly waiting to receive their bundle of joy, the announcement by the nurses, marked her long journey of questioning and basically tough times. Born in Luhya land, childbirths are celebrated and are sources of joy to the family and the entire clan. However, when she born and the nurses realized that she was not normal, her birth brought nothing but sadness, to both her family and the clan as a whole. Born in times when little was known on disability and those born with disabilities were hidden and at times even killed as feelings of shame and guilt were associate with giving. Hence disability was and is still viewed as a personal tragedy which the individual and family have to cope with. Her birth came with all sorts of explanations on the reasons why she was born that way, and amidst all these disappointments, she found acceptance and love in her parents. Much as the situation was devastating she believes her parents drew their strength and courage from her grandparents who were staunch Catholics, holding to the belief that life is sacred and no one has the right to take it away, and that it has to be protected and loved.
Josephta contends that living a life with a disability is not easy and it requires a “never say die” attitude which serves as undying inspiration and motivation for moving on with life. To cope with her disability which is very distinct she somehow had to develop a strong shock absorber to cushion her from the curiosity, teasers, sympathizers, cruelty etc. around her and because of this she had to look for a way of confronting the situation through crying, keeping quiet’ hiding from people’s being arrogant and aggressive or even fighting her tormenters depending on the situation.
As a small child she realized that she was different from the rest of the people around and curiosity got the better of her and she kept asking why but never got any satisfactory answer from those around all she got was ” Ni mipango ya mungu” that is her condition was a result of God’s plans. “Hence at that early age I knew that nothing could be done about my condition to correct the defect”. Joseptha’s life has been that of challenges that seemed trivial and victories of overcoming those very challenges To her the greatest achievement was the moment at that early age she learnt how to hold objects using both arms, this was a great milestone as it opened her way for independent living: She learnt how feed herself, hold objects like the pen and scribble things on paper or on the ground etc. Knowing how to do certain things by herself made to gain more acceptance from her friends as previously her friends found her a bother. The journey of hope began, her mother was there to cheer her up and every visitor in the family was told about the news, this affirmation of her capability and potential was the message she needed most. A reassurance she could conquer, and there were people around to celebrate those triumphs.
Looking back she wonders how life would have been for her if she had to depend on someone to feed and clothe her; the limitation of lacking a choice and the freedom to make decisions. She jokingly talks of a situation where you want to bite a loaf of bread and have to depend on someone’s mercies, on how many bites and size you take. From her young age she hated dependency, she further explains that it is not the physical conditions that disable people but the barriers and obstacles around the lives of persons with disabilities. Knowing her limitation, her parents spent more time training her on how to hold a pen and to write. By the time she went to school she already knew how to write and was therefore not burdensome to the teachers. Her parent had to make a pre-visit to the nearest school to her home to ensure the administration would support her. Her first day in school remains a longtime nightmare that will take time to forget. Learning came to a standstill as children from lower to upper primary surrounded her; some ran up and down crying there was an evil spirit in school. The humiliation deterred her from going back to school, but her grandmother encouraged her that she should defeat her bullies in class. The decision to take her to school was met with mixed reactions from relatives and friends: Whereas some felt school was the best place for her “what else could she do” others were skeptical and wondered why my parents were wasting their time ‘‘what would she do with education, nobody would employ her etc.”. The first year in primary school was for adjustments; she picked her momentum from class two and began leading in her class. She became a darling of everyone, when the C.P.E. results were out the headmaster was so proud of her great results that he could not wait for the family to go for the results as it was the norm, instead the late Mr. Francis took her results home himself.
Josephta received her admission letter to join Alliance Girls Nairobi, this was received as good news and at the same time a point of concern on how she would, for the first time, survive away from the care of her close family members, It was suggested that her position be swapped with a classmate who had performed poorer than her but she remembers crying the whole night until her parents dropped the idea of swapping places and took her to her school of choice. This is a pointer to the fact in life especially of a person with a disability people just want to make decisions for you but you must be daring and forceful to have your way. Joining Alliance Girls exposed her to an environment far from home as she interacted with people from different cultures and backgrounds. She has to take on responsibility for her personal belongings unlike before though she had to undergo the same torture of being stared at and unsavory comments. To cut a long story short she was accepted and teachers and some students were very understanding and did what they could to make life comfortable. This is a time when teenage hit her and as you are aware teenagers are vulnerable people, they care so much about their looks and appearances and very conscious of what other people say. Negative thoughts and self-destruction passed through my mind. This happens to Persons with disabilities and she adds “show me a disabled person who has never attempted or contemplated committing suicide and I’ll show you a liar”.
During the holidays she remembers her re-union with the family and more, with the cousins. She always had to work extra hard and apart from having to live a life of proving herself, and the peers who were warned not to interact with her lest they get her condition, there were people around her who showed her and deep concern., for instance there were the old ladies in the village, who kept confessing that she would be an officer in future and that’s why God had given her only two fingers that could not till the land, and like a prophecy, this came to pass. One thing she still remembers vividly, was the warning she always got whenever she would go out playing with her cousins. A reminder that as much as she was wasting time with her peers, they would get married and leave her at her father’s house, in reality she had failed the wife material criterion. She painfully elaborates especially gender roles define a woman’s life For instance a woman is supposed to be physically strong to till the land and fetch water from the river, plough the land and feed the animals, these and many more other roles defined for the woman.The numerous reminders made by both close people and outsiders must have influenced her choices in a big way, She painfully remembers how she suffered low self-esteem in her teenage. Her classmates would tease and wonder why God gave her beautiful hair. She actually never keeps long hair. Then thoughtfully she asks, if there is a person with a disability who has never thought of suicide at some point in their lives? She remembers how her self-esteem was shaken until she used to hide herself in the house whenever there were visitors, Her parent must have noticed the untold pain she was undergoing that they took her to Mulago General Hospital in Uganda where she was to receive some assistive devices to compensate for her height. This was a raised shoe and form of calipers and some appendant in shape of hands To her this was an unnecessary liability and was making her life more miserable, After all she had nothing to hide, I guess my disability is so conspicuous that even a mad man stands to stare at me, for the notice the difference.‖ she says smiling an indication that she has truly outgrown her disability.
With all these she resolved to live her life, without ever comparing herself with anyone. She picked her broken pieces and resolved to have a successful life, the song count your many blessings became her personal anthem, every day. She had reasons to be happy, people without disabilities were dying and she was alive., She was doing well academically, she had a family to receive her with unconditional love when the world bruised her right and left. It out of these tough decision to live a life above average success level that she worked hard in high school, did well and the University of Nairobi.
As she grew up she had not interacted or seen a successful person with a disability in a senior Government office, she therefore resolved to be a role model and change the narrative where the destiny of persons with disabilities was always attributed to begging on the streets. Therefore when ability magazine requested for this interview she saw an opportunity to tell every child with a special need that they can make it in life Every parent to know their children are gifted and, see beyond the disability ,Josephta had only one mentor, her uncle who was studying at Makerere University and therefore she knew she wanted to be in the university, She remembers the old good days; unemployment was unheard of, if anything, one stared earning while at school, the famous boom that the new generation cannot relate with. She got her first job after 6 months from campus as a human resource person; a job she has grown through until she was appointed to her current
Position in 2013. She has faced discrimination at work at different levels and that’s why she believes creating disability awareness is a crucial need. She remembers an instance where her boss wondered if she could write, other times when she got promoted her colleagues would say that she was promoted on the basis of her disability. Joseptha always tries not to use her disability as an excuse for failure or a reason for sympathy, In 2003 she left the country for further studies in Europe, University of Manchester where she graduated with a master’s degree in human resource management, She acknowledges Kenya as the only African country that had offered scholarships to three persons with disabilities that year. She acknowledges the fear of the unknown that gripped her when the thought of being away from home, she was advised to settle for an institution within the country. However, her determination conquered, the government increased her stipend to cater for the extra cost. She challenges persons with disabilities to dare dream. .She has a message for the youth, no one owes you your disability, ,you can only decide to be a victim or a victor, I am not assuring you a life free of discrimination, but people will treat you as you present yourself, my nomination was an affirmation that the Government of Kenya and more so the president recognizes the potential of persons with disabilities.
As we come to the conclusion of our interview Josepthta explains having a disability however minute or severe it is always difficult. However, being a woman plus having a disability is a difficult road in a patriarchal society, this situation influenced her decision not to marry or have children, and after all she grew up being reminded she did not fit or qualify to be married. She believes the society has not embraced disability well enough to make life any better for children born with any kind of disability; the ultimate reason why this magazine is very timely to help demystify all the myths about disability.
Special attributes to the disability veterans who have fought and made the road easier for the new generation, much advocacy was done through the umbrella national organization UDPK (united disabled people of Kenya) The heroes like DR Samuel Kabue, commissioner Lawrence.