I am going to tell you my story, which has unfolded over the last forty years, beginning on 14th October 1968 in Kipipiri, a rural community in Kenya's Central Province, and continuing to my present circumstances in Nairobi Kenya, where I work for Barclays Bank. The twists that these four decades have taken surprise even me, not so much because much of what happened is unusual but because the word "abnormality" has come to be a permanent companion over those years. But with fortitude I have moved on to get to where I am now.

But let us go back to the beginning. At the age of one and half years, like many other children of my generation, I contracted polio, which was a common story back then on account of lack of vaccinations and health care workers. At least that is what my mother said later in life when I enquired about this "mark" that I had been branded with from infancy. You need to note that our home was very far from the mission hospital and the dirt roads made it difficult to get there, and generally one avoided going if one didn't have to — or so my mother thought — with the outcome being the polio-stricken girl who is writing these reflections four decades later, herself now a woman and a mother.

There were twelve of us siblings in the family, and I was the fifth in the queue. My parents were — and still are — peasant farmers. Over the school holidays as others went to work on the farm, I would always be left at home to do the cleaning of utensils, cooking, and taking care of the young ones. I would also take care of the sheep and cows. Unfortunately, what I did was not considered as work. "You are always at home," my family constantly reminded me, "and you do not know where food comes from." It would be big trouble for me if lunch was not ready by 4pm for the farming majority. Supper would be expected at 11pm. I didn't know it then but this should have been good preparation for my disappointment later in life when as a woman I am expected to cook for and feed people in my house, both as a duty and, more significantly, "because cooking is not work." My disability intersects neatly with my womanhood, after all.

But to return to the narrative of my childhood. My father always mourned what "a big burden" it was for him to bring up "a cripple" — never mind that there was not much that the simplicity of my circumstances required. In my Gikuyu mother tongue the term cripple is kionje, a word which, no matter how and by whom it is uttered, captures the sense of ugliness, a grotesquerie that serves to underline for everyone, and more so the subject in question, uselessness beyond the "disfigurement" that it conjures. This term no longer bothers me but back then it hurt me a lot; with the benefit of hindsight, perhaps, I ought to have gently inquired from my father from whence the said "cripple" had come. But children in my part of the world do not have the leisure of questioning their parents' and society's lapses of logic that lead to collective social disability, so I kept the raging turmoil tightly bottled up within me. Cripple. Burden. Useless. These were key terms of my early childhood and thus in the process of my growing up I knew clearly that I had to work very hard — even though I had been adjudged to be incapable of "real work" — in order to escape both the poverty at home and to try and achieve some leverage with which to deal with the social prejudice that stuck around me, the same way my disability did. Regardless, life in the village had its own idyllic side; the deep bluish-black of the Western flank of the beautiful Aberdare Ranges blended well with the excitement and unrewarded, nay, unrecognized tedium of every day chores. Contemplating the forest scenery took my mind off my dim circumstances.

I started school at the age of seven, rather late even by 1970s standards. The school was situated five kilometres away from home; hobbling to school was a daunting task. The stigma of disability is something I have learnt to stare down, metaphorically speaking. School itself was frightening, to say the least, but I had to withstand the piercing stares from other children who found my walking style strange. To make matters worse they would always scheme to steal and throw away my walking stick; I have often wondered why I never deployed that stick against my tormentors, but then it seems, with the benefit of hindsight, that this would just have caused me more conflict with society. I already had enough of it, as it were, without inviting any more. In any case, my cane was not much of a walking stick, having been merely a sturdy twig hurriedly torn off a tree by my brother who would also be my protector and would fight off the children who made fun of me. This taught me the value of building social alliances, a skill that I have continually relied on to date. Of course for his protection I would pay back generously to my brother the day my parents brought home a kilogram or so of meat — my disability has cost me some delicacies in this life, as I will demonstrate further below.

My situation, which was already bad, was beginning to look rather hopeless, but much-needed help came to me one day while at school in the shape of a Catholic nun who happened to pass by our school — those days you could only be delivered from the jaws of misfortune by a Catholic nun or priest, the only ones who provided "social services" for people like me. Government, then as now, was never really been truly bothered by the fate of the "tribe" called "the disabled." The headmaster related my travails: how difficult it was for me to attend school. Setting off on my journey to school in the cold twilight of 5.30am I would always be late, arriving at 9am or 10am. I never would escape the beating from the teacher on duty for lateness; disability was not an exception to curricular requirements. I would sneak away from school by 3pm to be home before night fall. Angel of mercy that she was — how else could I have described her? — the nun visited our home, assessed our situation, and after parleying with my parents (they were at first hesitant to give up their child to the care of a white woman, but the alternative — torturous walk to school for me — would have negated any claims of love, even though for a crippled burden) I was taken to a Roman Catholic-run boarding school — Ol'Kalou Disabled Children's Home — far away from home. The only challenge was that my father was not able to pay the school fees — just a few hundred Kenya shillings then — and after two years he wanted me out. He wanted me in a rehabilitation centre where I would be taught how to sew cardigans and dresses and turn in a quick shilling — at that tender age mark you, I'd have been earning money, for someone else, of course. I really loved school and luck, again, came to my rescue. In retrospect, though, I'd like to claim having had a hand in the matter too.

Certainly it was not by some stroke of luck that I had topped the class throughout 1978, and it was on this basis that the Catholic missionaries thus allowed me to remain in school and perform extra duties in lieu of school fees. I was ten years old then but with dexterous resolve, and despite my physical limitations, I took to cleaning the girls' ablution block and the toilets and taking care of the children who were more physically challenged than I was. Emotionally this was very embarrassing for me because everyone knew I was the girl whose father couldn't pay school fees and who had to clean toilets to stay in school. But I had learnt that given my parents' circumstances and my condition you learnt to make do with whatever hand fate dealt you; at least that was the best I could make of my situation at that point in time. This was the frame of mind that enabled me to endure the brush and broom strokes as I cleaned away, earned my keep at school, continued to do even better and, excelling beyond anyone's expectations, I passed my primary school exams at the top of the 1982 class and joined a good national school — Bishop Gatimu Girls, Ngandu, in Nyeri District — the following year. There was no turning back, now that the empowering education genie had been removed from the bottle. I could smell my appointment with a degree course, which came from Kenyatta University, Nairobi. I graduated with a Bachelor's degree in education in October 1994.

As one would expect, a good degree naturally leads you to a job placement. I am currently working for Barclays Bank of Kenya. But I am jumping the gun. It was not easy to get a job after completing my university education. Besides, thousands of us literally hit the job market in the middle of a debilitating economic downturn; those were the years of the Structural Adjustment Programs (SAPs) and where civil servants were being sent home, the rest of us newly graduated innocents were looking to take up jobs and "build the nation." But perhaps I had forgotten the lessons of my childhood too quickly — that is what education does, liberating the mind and teaching you to see the world beyond the narrowness of the local. My job-hunting experiences rudely jolted me back to the awareness that the social prejudice of the village hundreds of miles away and many years removed from the present that I thought I had outgrown merely by acquiring a degree, was tightly connected to the Hobbesian jungle that Nairobi was then, and still is. These were the circumstances under which many of my upright-bodied college mates snapped up job offers, leaving me on the beat. Apparently my real education process began after I hit the tarmac, literally, in search of a job. From most of the places I went to I was turned away with some people wondering aloud: "What can she do that normal-bodied employees will not do twice better?" Others would snort that their businesses are not charitable organizations. So, here I was, an "abnormal body," an object of charity; "cripple" and "burden" sprang up in my mind with such violence I determined no matter what anyone said, or did to try and dissuade me, I was going to get myself a job. If my "abnormality" had acquired me a degree, it was not going to be an obstacle to getting me a job.

Eventually, after much knuckle-bruising door-knocking and searing gazes from prospective but unwilling employees I got to Barclays Bank on Moi Avenue in Nairobi. I was welcomed, my qualifications evaluated, I was duly interviewed, and I was offered a job. I have never left the organization — why should I want to leave the first employer to see beyond my physical condition into my interior being, the me? And I haven't stuck with them out of some hazy notions of gratitude. Fifteen years now I have worked with Barclays Bank-Kenya because the opportunity has allowed me to push myself to be better and to grow. There are many challenges at work though. Having some physical limitations for instance means that I have to work extremely hard to prove my value to the corporate body.

As I grow older I am haunted by a nagging fear, because my body is wearing down pretty quickly and I am no longer as strong as I used to be. But on the other hand all employees are on performance contracts and we all have to prove that we are contributing to the business. While this is a good business idea, for those like me who have to live with health challenges related to disability, the pressure is too much to bear. At work, for instance, there are some people who carry the mentality that I cannot possibly be better than them, and so there is the demand to fulfil all these unspoken demands for me to prove myself, and thus I go through my working days fighting all these psychological and emotional battles. But I endure and take on the challenges as they come, earning my place and using my position in the firm to help effect whatever changes I can.

I have been a union leader for six years now and I am proud that I have helped bring about a lot of positive change, especially for nursing mothers. Indeed, the narrow village experience where I was condemned as incapable of work is a distant memory given how the world of work opened up and, despite its challenges, embraced me. However, I am also conscious that there are others like me who are still being judged and dismissed just as I was. But slowly, and aware of the enormity of our circumstances, we seek to turn the tide. A good opportunity presented itself when the Bank's Managing Director appointed me to the Country Community Committee in 2008, after having recognised my commitment through fundraising to help girls with disability access education. Throughout my working life I have been a volunteer mentor for girls with disability, urging them to attend school and to excel, and assuring them that they too can pull themselves up out of the abyss of despair to which society might want to consign them. I also mentor "normal" girls from poor families, encouraging them to attend school because poverty will still hit them hard, regardless of the fact that they bear no disabilities. In my speaking engagements, I require that the girls seek to overcome the mental and material condition that affects them as females, regardless of their physical condition, because that is one big aspect that really disfigures our humanity. I never show off to these girls, or anyone for that matter, what I may have achieved thus far, but I always impress upon them the fact that I am a living example of what it means to be determined to beat the odds placed in one's way and make something of one's life.

In spite of my capacity for endurance, my social life has been the greatest challenge. I have a family of my own. I am a single mother of two girls, Katrina, who is twelve, and Kristina, who is five. I loved their father so much but he was spectacularly disappointing; I have since lost the capacity to feel for him. He took off and married another woman — normal, I heard — because his family rejected a crippled wife for him! He does not take care of the girls or provide for them in any way and I don't think I have the right to force him to do so; it is an ethical decision for him to make. Also, we were not married, and under Kenyan law, a woman in circumstances like mine has no recourse to the justice system. Regardless, I work extra hard to ensure my children have food, clothes, and schooling. I will never give up on them. My heart is filled with a deep loneliness because all my life I have always wanted a complete family. I am not alone in this fate. For instance, take my friend Jane. She is also physically challenged — she walks on two crutches — and had been looking for a spouse for over ten years after graduating from the university with her first degree. She is smart too; in 2007 she obtained a Masters' degree. When no husband came along she decided to be a single mother. Even though men with disabilities suffer the same social stigma, for those of them who have jobs and a decent income — that is, those in a position comparable to mine — it is still possible to marry and attain social recognition. Thus it is mainly for women like Jane and others in situations like mine to whom I hope my story can offer some comfort, no matter how little.

One last detail about my family: they expect me to pay back for, according to them, all the trouble they went through for me to be what I am today. I have been looking for evidence to back their claims of involvement in shaping my life but all I seem to remember starkly is my wielding that broom and brush at the ablution block many years ago. This is not to mention that apart from shouldering my responsibilities to my children, I have been supporting the dependants who come to me in the name of siblings: school fees for their children, doling out money for this or that because, after all, I work at the bank. There is a sense of irony in my siblings' claims upon my income too: some of them have two wives, all "normal" but it falls on me, "the family cripple," to support them. On 12th December, 2008 we had a family meeting in the village where I was asked to 'pay dowry to the family.' According to them I will never get married. In a single stroke, they had fashioned a new custom for the Gikuyu people that is surely fit for a Guinness Book of Records recognition: forcing educated women with disabilities to pay dowry for themselves! So you see where I have had to endure the torment of family.

Naturally, I have sought peace in the church, to which I have been a committed follower all my life, not as an obligation because of the nun who rescued me from an uncertain fate in the village so many years ago, but precisely for the spiritual nurturing I get. But even this religious bastion has not been devoid of unnerving experiences. Most people I have met in church question the depth of my faith. If I had enough of it, why then have I not been healed of my "deformity" like the cripples in the bible? I have had comments directed at me such as: "You will get healed one day. Just keep praying." Of course this is annoying given that I go to church for spiritual and not physical healing; I have long accepted my physical condition and as such it is irritatingly presumptuous for other churchgoers to conclude that I have a problem with God on that count. If anything it is His people who make me unhappy in church. So people tend to keep away from me or other persons with disabilities on the assumption that we are desperately in search of physical healing, that our faithless company is contagious, and it is therefore best kept at arm's length or, even more likely, that we joined the church merely because we are looking for charity. One would assume that because of all the travails that assail me, people would give me some space to retreat into some sort of interior peace, but it seems that all of society's institutions have a longstanding conspiracy to deny me any measure of respite, just on account of my disability.

Post script: beyond my laments

There is always a lingering temptation to wallow in bitterness if you have lived as tortured a life as mine. But I prefer not to focus on that and instead see what good things have come to my life, to enjoy them within the limitations of my material conditions and to draw lessons that might make life just a little bit more bearable for the next disabled person. The first has to do with the need for adopting survival tactics. I use public transport, which usually is crowded, but having grown up in a large family I learnt the value of negotiation for survival; you will be surprised at how easy it is to get someone to give up their seat for me. And sometimes all it takes is asking (some people cannot "see" your need and it has to be verbalised).

Secondly, in Nairobi, even though we have a beautiful law called the Persons with Disabilites Act (2003) that, among other things, addresses the question of building access, the truth is that few buildings are adopted for universal access. As a consequence I have learnt to cultivate and value relationships with the guards in these buildings who usually help me get up the tedious stairs and even offer to run errands for me. Until you talk to them you would never know what deep reserves of cheer and warmth lie in most of these guards whom we often assume to be nothing but a part of the cold lobbies and concrete walls in whose proximate company they while away their days.

Thirdly, I am also seriously contemplating starting an association to mentor persons with disabilities. Most of the ones I went to primary school with look up to me for support, especially that of a financial kind, which my own resources can't realistically be expected to meet. I try to help those that I can, but for the most part I merely offer moral support and counselling. A majority of persons with disabilities are very frustrated with life, not least because society has no proper mechanisms for understanding — leave alone fulfilling — their needs. As such, a counselling-mentoring program for PWD, especially for women with disabilities, might be a good beginning point for trying to help empower people in order to cope with the enormous challenges in life. I am hoping to team up with others to see if we can help lighten the load of despair amongst fellow PWD. Finally, I have learned to make do with less — I will never come close to being a Bill Gates anyway! — and, even as I take a long-term view of things, to live each day at a time, savouring the joys that come my way as I seek to surmount my dilemmas hoping that tomorrow will be a better day. After all, I can overcome my troubles because being a woman, and disabled too, I embody tenacity, living my life as fully as I can.

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Copyright (c) 2009 Beneditta Ngina Gathecha

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