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Reflections

When Your Genes Betray You

7 min read.

A force was rooted in our bloodline, passing from generation to generation unseen, creeping up and snatching a life as it bloomed.

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When Your Genes Betray You
Photo: Angiola Harry on Unsplash
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My grandmother died of ovarian cancer after a series of misdiagnoses two years before the new millennium. There was hardly any public awareness then and little was known of the disease.

I was named after my grandmother, I barely remember her as she passed on when I was seven. But there was more than just a name that linked us and it was the BRCA 1 mutation we shared. I had known she was sick; in the hazy manner children know things. She was a retired primary school teacher though her true passion was farming. My grandmother had kind hands and a beautiful voice, always humming hymns as she tended to her kitchen garden. But hardly got the time to live out her retirement. From the memories my late mom shared of her through storytelling, cancer first came for my grandmother’s ovaries and then for the rest of her, a fate that befell my mother years later, beginning with her breasts.

This bleak history had haunted two successive generations of my family, creeping up and snatching a life as it bloomed, before we realised it was an inside force rooted in our bloodline that passed from generation to generation unseen. My mother was diagnosed at the age of 40, a tragedy as the cancer was already at an advanced stage. The oncologist advised us to look into palliative care as there was little else to be done; at least she would be comfortable for the six months she had left to live. We resisted this truth. How can another human being know with certainty how long someone has to live? Isn’t that a truth only known to God? This denial set us on a desperate course and after six months, the heartbreak that befell us left us lost. How can someone deteriorate that fast? Her hair thinned, she lost weight, her skin burnt.

The night my mother passed away, I woke up in the hush of the night with an ache in my heart. It felt as if something had broken off. I had visited her three days earlier and she had seemed better. We had even had a conversation, unlike the other times when her responses were just fading sounds. The glimmer in her eyes was back. In our culture we believe that you know when death has come for you; it lingers first, leaving clues for those left behind to pick over as they grieve. The glimmer in her eyes was to help us remember her as full of life and hope even to the end. Death sometimes announces itself. For us it was through the oncologist but our refusal to believe in science made death seem like it had arrived in the cold of night cloaked in darkness. My mother passed on in her sleep. In the days that followed we felt like we had been uprooted. Even the sun shone differently; we could see the light yet we didn’t feel the heat. The colour had seeped out our canvas, we had been ripped apart, everyone on their own. We didn’t know how to be together in sorrow.

After my mother’s demise, there were murmurs that the disease was a curse, with some implying that our family needed to do something to expunge it. Could it be true? For there was a clear pattern of ill health. My grandmother had been pious, one of the many characteristics my mother mirrored. After the seven days of mourning that followed my mother’s burial, we held a prayer ceremony after which we the bereaved stepped back into society. The fact that my maternal grandmother had also died of cancer was not lost on us and I vividly remember the pastor who was presiding over the ceremony quoting a verse from the bible that spoke of generational curses. It says that God visits the iniquity of the fathers on the children and the children’s children, to the third and the fourth generation. I was the third generation. Did God hold me liable for something someone else had done? There was hope, according to the pastor; prayer and fasting would lift dark pall that hung over us.

I was now partly an orphan and that is how, with my good grades, I qualified for a scholarship in the United Kingdom. But I was not sure that the void I would leave behind would be felt, that I would be missed when left for London. Moving away helped though; it made me more detached. I read somewhere that the weight of a death is assessed by its aftershocks, and mine did pile up. I went through my undergraduate studies in a haze, focusing only on what was important — keeping my scholarship. I finished my degree in statistics and operations research and went to graduate school as I worked part-time and this is when I met Anna, a molecular biology graduate student.

I dreaded talking about the thing that had killed my mother, but Anna got me to open up about it, only for me to realise how raw my buried emotions still were 11 years after she had left us. As I explained to Anna my family’s history of cancer, she suggested that I get tested for the BRCA mutation, but I was not ill, not yet. If cancer was a curse, there was hope. But a faulty gene? That was beyond my ken. A year later, I was ready for the test that would give me a chance to get ahead of the defective gene if it was in my body.

I had to book an appointment for a risk assessment before I could qualify for the test on the National Health Service. My risk assessment suggested a BRCA mutation; I had a family history of ovarian and breast cancer, and both my mother and grandmother had been diagnosed before the age of 50. I went back for the blood work the following day. You are too young, the genetic counselor said, and she was right. I was 28. The results came back two weeks later and they returned positive. BRCA 1. A gene that produces tumor-suppressing proteins that stop cells in the breasts and ovaries from growing and dividing too rapidly thus preventing the growth of tumors. BRCA 1-positive; a person with a mutation to his or her BRCA 1 gene, meaning either that the gene is altered or broken, impairing its ability to suppress tumors.

I was that person.

Genes work in pairs and we inherit a copy from each of our parents. One copy of my BRCA 1 genes was faulty, most probably the pair I got from my mother. And that was not all; this meant that I was at increased risk of breast and ovarian cancer. This information was paralysing. And even though going into the test I knew I had a 50 per cent chance of being a carrier of the defective gene, I hadn’t thought through what I was going to do if the test came back positive. I preferred to take it one step at a time. With a family history that clearly indicated that my mother might have had the mutated gene, I was working with 1:2 risk ratio yet I still felt the universe owed me some good news. It was disheartening. I felt forlorn. The results gave me a glimpse of what awaited me, my possible future as I reflected on my mother’s death. For the next few months, as I tried to understand what this meant for me, it felt like I was walking into a void engulfed and knotted by uncertainty. Having the BRCA 1 mutation redefined who I was, my old self peeling away. I didn’t just have a mutated gene; I had a 75 per cent risk of developing breast cancer. How do you go through life with this hanging over your head?

The test was a mark of privilege, a possibly altered fate, a choice both my mother and grandmother had not had. I was lucky, yet I still needed to do more.

Having a double mastectomy, the surgical removal of all breast tissue, is draconian to say the least. But cancer is a word too loaded for me to unpack; memories of my mother before the cancer, and what was left of her after, had me on edge. I needed to talk to someone who made me feel at home, my maternal aunt. But whatever had bound us together untill then broke when I mentioned the surgery. For my aunt, to go ahead with the surgery would be to mock God, my faith, her faith and my mother’s, and she wanted nothing to do with it. No one in my family wanted anything to do with it. They thought I had been brainwashed.

The most effective precautionary measure is to remove the organs that are at risk at a young age as the risk peaks in your thirties. In my case, it was my breasts. Self-preservation, removing some parts to save others, that is what kept echoing in my mind as I lay on that surgical table before I drifted off. Post-surgery was brutal and my impatience to get quickly back to normal did not help. For ten weeks it felt like time had slowed, the earth had lost its form. I had done the right thing, I knew that. So why did it hurt this much? Anna got me post-surgery bras and lots of teas. I was a foreigner in a foreign country. Having a mastectomy because of a faulty gene made it worse. There was no support group for me; I had to walk this perilous journey alone. I am glad I qualified to have the test and the surgery on the UK’s National Health Service — their version of Kenya’s National Hospital Insurance Fund; the costs would have floored me.

Do I sleep a little bit more soundly? Yes, although a lot has changed for me. The test and the surgery did not remove the mutated gene; it will always be a part of me and so will the consequences of my proactiveness. I lost my breasts, and my body aches for that loss. Before I could afford reconstructive surgery to regain a semblance of what I had lost, I needed to adjust to not having a part of what so greatly defines being a woman. The first time that I tried to get intimate with someone after surgery and before reconstruction did not go well; the look on his face made me feel like I was an imitation of my old self, that I had duped him. That night I mourned the loss of my breasts, sobs racking my body until I couldn’t breathe. I must have passed out; when I woke up it was morning. After that day, things began to change; I had not gone through all that to sulk and take pity on myself. I wanted to live; I was not willing to die for my breasts. I had reconstructive surgery and this time round I had more support — from the man who would later become the father of my child. I had had the surgery for myself; it lowered the risk to 5 per cent. I have made a few lifestyle changes: I am vegan; I don’t take alcohol and have a fitness routine. Awareness is power, although that power can be overwhelming.

As for the fourth generation, my daughter, I think of my 5-year-old who may have inherited the gene. A child of a BRCA 1-positive person has a 50 per cent chance of inheriting the mutated gene. When the time comes, I will definitely talk with her about it and urge her to go for the test even as I remain hopeful that by then non-surgical preventive measures will be available. The test was not just for me. It was for my daughter as well, my way of breaking the curse, freeing the generations to follow. Our first step out of the darkness.

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Nelly Madegwa is a graduate of the University of Nairobi (BSc. Applied Biology). She is currently volunteering at the Kakamega Forest Heritage Foundation, and is a trainer on sexual and reproductive health rights.

Reflections

The Abortion Debate: A Personal and Anthropological Perspective

In the wake of the United States Supreme Court’s ruling overturning Roe Vs Wade, Martin Owino gives a personal account of his experience of abortion as a husband, a father and a Christian.

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The Abortion Debate: A Personal and Anthropological Perspective
Photo: Maria Oswalt on Unsplash
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Is abortion murder? When does life begin? And what of the overturning of Roe vs Wade?

But first, let me share my story.

We didn’t mind welcoming our firstborn. Of course, we would have preferred a slightly delayed arrival. But, heck, we had conducted a Christian wedding, and we were terrifyingly excited about our child’s arrival about a year later. Children, the Bible says, are a heritage of the Lord.

Then, three quick years later, the second born arrived. Again, unplanned. But, well, economically sustainable. Or so we reasoned. While the second delivery had also been smooth, we wanted this to be the last child we would have. However, both of us were a bit reluctant about taking hormonal contraceptives. We had heard stories of close friends who had struggled to conceive after using hormonal contraceptives. We were also aware that medical research pointed to a possible link between synthetic hormones and the development of certain types of cancers, which made us wary of making that choice. We considered the coil because it is non-hormonal but the way it worked seemed like abortion, which to us at the time was a most abominable sin.

We thought we could manage with natural methods, using condoms during the fertile window of the menstrual cycle, usually between the 7th and the 16th day. For a while, we thought we were acing it. However, and unknown to us, we were treading on dangerous ground.

When my wife conceived two years later, she was traumatized. In desperation, she suggested abortion. I, however, brushed the suggestion aside; I thought it was unethical and unbiblical. We kept the pregnancy. Those were some of the longest nine months of my life. The truth is my wife did not want the baby. She kept it at my insistence. Well, the baby finally arrived—tolerated more than celebrated, a low-key birth that even our parents learnt about much later.

After three accident-babies, we had to make a decision on some form of contraceptive—preferably a permanent one. The natural method had failed spectacularly. We had two alternatives: either my wife underwent tubal ligation or I had a vasectomy. From our reading, we saw that having a vasectomy was a simpler procedure, taking less than twenty minutes. I therefore decided to go under the knife and spare my wife a more complicated operation. It even sounded heroic.

I called the facility in advance and booked a date when I would have the vasectomy. It was a reputable hospital and the doctor was an experienced urologist who had carried out vasectomies for three decades without encountering any complications. It was time to bite the bullet.

I took the afternoon off from work one chilly Friday and went to the hospital where I found a small queue, nothing to make me fret. I waited my turn and saw the urologist at 4 p.m. A female nurse in a blue apron and well-fitting trousers stood beside him. Light-hearted introductions put me at ease and there followed a question-and-answer session during which I gave my medical history. Then I was asked to climb onto the surgical bed and remove all my lower garments.

I felt very uncomfortable.

It had not occurred to me that I would be doing this in the presence of the female nurse, or even that she would be involved in the procedure, taking hold of my penis, and presenting it in the position that the urologist required. In all my married life, I had not been in such a situation other than with my wife; it felt almost like sexual abuse. It didn’t help matters that the nurse was young and not unattractive. I gritted my teeth and looked up at the blue ceiling.

Then I thought of what my wife—and other women—go through in the offices of male gynaecologists and obstetricians. I swallowed a lump in my throat and let the thought slide. As expected, the procedure went well and I was out in 15 minutes. I even took a matatu back to my house and reported to work the following Monday.

I was advised, among things, to abstain from sex for a while (I cannot remember the exact days) in order not to jeopardise the success of the operation. I followed the advice to a tee. I was thrilled that my wife and I were now putting the subject of contraception behind us. My doctor assured me that the procedure was 99 per cent effective—or something close to that—and I did not think it was useful to worry about what the snowball’s chance in hell of something going wrong.

After about a month, I resumed my normal sex life. However, about a year later, Murphy’s Law would soon spoil the party.

It was the 31st day of my wife’s menstrual cycle and her periods had still not come yet for many months her cycle had been remarkably regular: 26-28 days. She said that she had not experienced the usual pre-menstruation signs at all. I dismissed her anxiety with a wave of the hand; three days was not anything to worry about. But two days later, on her 33rd day, the “visitors”—as we still call the arrival of her menses—were still nowhere to be seen. This time she was adamant; we bought a self-test pregnancy kit the same day.

I was still quite confident, unbothered even. I couldn’t be the statistical aberration. My wife did the test that very evening and brought me the results. They were positive for pregnancy! It was like a thunderbolt. But we read somewhere that the most accurate time for the test was in the morning hours, something to do with the concentration of the hCG hormone (the human chorionic gonadotropin is a hormone that is produced by the placenta during pregnancy) so we consoled ourselves with that information.

We awaited morning with a lot of apprehension, not untinged with panic, but the following morning the test came back positive. For my wife, having another baby was completely out of the equation. This time, I shared her views. To say that my wife was devastated is an understatement.

Abortion? That’s right. We were terminating the pregnancy.

Three children were enough. Four looked like a pandemic. We called the urologist in mid-morning hours and he gave us an appointment for a week later. That would be the 40th day. While I supported my wife’s decision to terminate the pregnancy, I was still a troubled man. I couldn’t reconcile this decision with my Christian worldview. Naturally, I turned to the Bible, to read the one verse that was constantly beeping in my mind, the verse about Jeremiah and how God had chosen him to be a prophet before he was born.

After everyone had gone to bed, I went to my study and opened the Bible, not for encouragement, but to ascertain its condemnation. I went for my favourite version, the KJV.

Before I formed thee in the belly I knew thee; before thou camest forth out of the womb I sanctified thee, and I ordained thee a prophet unto the nations.

Strangely, this verse did not now appear to support the thesis of life before birth; certainly not that of personhood before birth. Instead, I thought it merely supported the thesis of the omniscience of God: the all-knowing, far-seeing God. In any case, I wondered what the “Before-I-formed-thee-in-the-belly” time was. When does God start forming people in the belly? If it’s at conception—when the egg and the sperm meet—then where is the autonomous personhood of Jeremiah before this time, the individual that God says he knew before this process and ordained to be a prophet? It could well be the sperm of Hilkiah, Jeremiah’s father, or the egg of Mrs Hilkiah, Jeremiah’s mother.

I put the Bible aside. Obviously, I was justifying myself.

Then when I was still turning over this text in my mind, I remembered reading Obama’s The Audacity of Hope where he argued that positions on abortion that ignored the science of foetal development were unreasonable. Of course, I had dismissed Obama at the time. I thought his was the standard view of the “irreligious” American left. I looked up the word abortion in the Bible but I did not find one mention. I went to bed still convinced that abortion was wrong but somehow not as convinced as I had been before.

In the intervening days, I poured through the science of foetal development. I knew that the embryo inside my wife’s womb was not more than two weeks old. Later, I would discover that before two weeks, it was not even an embryo yet, but a zygote, or something of the sort. I wanted to know everything that happens to an embryo at about two weeks: how it looks like; whether it feels anything; and which organs have already formed.

According to scientists, there are some Ultrasound procedures that can detect a heartbeat about four weeks after conception, even though there’s still no heart. It was a mystery that I couldn’t fathom. Still, this provided me with significant self-defence ammunition; if the absence of a heartbeat signifies death, the presence of a heartbeat should signify life. Therefore, there’s no life in my wife’s womb since the “baby” is less than two weeks old. Hence, there should be no guilt for murder.

Of course, I did not also want the embryo/zygote inside my wife’s womb to feel the pain that is usually associated with as serious a crime as murder. The document that most assuaged my conscience was the Royal College of Obstetricians and Gynaecologists’ (RCOG) 2010 report on fetal awareness. According to the report, pain perception depends on the development of the cortex, which in turn normally doesn’t start to functionally develop until after about 24 weeks of gestation. Even with the development of the cortex, pain awareness is not guaranteed. This is because the experience of external stimuli will still depend on consciousness, which in turn comes significantly later.

I almost grinned.

The day of the appointment arrived and we made our way to the medical facility. The first test was a pregnancy test on my wife; both a blood test and a urine test. Of course, the test came back positive—even though I still hoped it would come back negative. Then it was my turn.

Did the vasectomy procedure really fail?

My doctor invited me to go into his office alone—unaccompanied by my wife. He told me that it was possible the vasectomy did not fail and that my wife may have “stepped out”. He asked me if I was ready to handle such an outcome.

It was a no-brainer; I trusted my wife completely. I gave the doctor the go-ahead to examine me to ascertain whether the vasectomy procedure had truly failed or if there was some monkey business. But he needed my semen for this test. He gave me a small specimen bottle, called my wife to explain to her what to expect, and walked us to a well-lit room with a metallic bed that was quite high.

In these circumstances, all my sexual urges disappeared like snow before the rising sun. It was almost two hours later that we managed to get going. After another hour, I went back with the semen specimen that had been procured without any passion—without any enjoyment or sexual pleasure. After carrying out the necessary tests, visibly surprised, the doctor announced the results. The vasectomy had failed. He gave my wife two tiny tablets, to be taken at six-hour intervals and also offered to do a repeat vasectomy at no charge.

My wife took the tablets as directed and the “visitors” got the cue. Over the following four days, she would experience what resembled her normal menstruation, only a tad heavier and lumpier. That was it.

I did not go back for the repeat vasectomy. I think I just gave up because of discouragement. However, I still believe my case was just an exception. Of course, the thought comes to me once or twice a year—when I wonder about what might have become of the “baby”. Still, it’s never accompanied by crushing feelings of regret or shame.

The subject of abortion has never ceased to intrigue me. I have quietly followed the abortion debate, admittedly seeking to justify my decision, even though I rarely admit this.

In the Christian world, it is a settled matter. Abortion is murder because life starts at conception when a sperm cell enters an egg cell and their genetic materials mix. Never mind that even after this meet-up and subsequent fertilization, the chromosomes do not mesh well in as many as 90 per cent of cases—and most are discharged unnoticed from the body. So, when a woman aborts, there is a high chance that she is aborting what may not have become a baby after all. Some have adroitly avoided this dilemma by arguing that life begins not at conception (since conception is chaotic and in a majority of cases is not successful), but after the chromosomes have mixed up successfully and settled into a rhythm.

Also, zygotic splitting, which leads to the formation of separate twins, usually takes place a few days after conception. This definitely upends our ideas of individual and autonomous personhood—especially at the time of conception. At this stage, the one-cell zygote is definitely biological life. But whether it’s an individual human life is another matter altogether. Still, some argue that life begins when the zygote burrows into the walls of the uterus, a process called implantation, which takes place about a week after fertilization. And while many argue that the starting point of life should be at the first occurrence of a heartbeat—which is usually after about four weeks—some insist it should be much later, when brain-wave patterns emerge. Then there are those who hold the view that life begins when it is viable outside the warm confines of the womb. The jury, as they say, has long been out.

Then there is the issue of whether the life of the unborn is equal to the life of the mother.

The Bible commands that “When there’s a fight and in the fight, a pregnant woman is hit so that she miscarries but is not otherwise hurt, the one responsible has to pay whatever the husband demands in compensation. But if there is further damage [such as the death or injury of the mother], then you must give life for life.” (Exodus 21: 22-23-MSG Version). Clearly, the life of the unborn, warranting a mere fine, is not the same as the life of the mother.

Mishna, the first major written collection of the Jewish oral tradition, has this to say:

If a woman is having trouble giving birth, they cut up the child in her womb and brings it forth limb by limb, because her life comes before the life of [the child]. But if the greater part has come out, one may not touch it, for one may not set aside one person’s life for that of another.

This shows that the life of the baby only assumes equal significance with that of the mother at birth. A different passage addresses the situation of a pregnant woman who has been given a death sentence. Apparently, the pregnant mother is executed even though there is an innocent “human being” in the womb. However, should labour pains begin before execution, the baby is spared since it is now recognized as a human being with the right to life.

In African traditional societies, many ethnic communities allowed abortion, which goes to show that it is not just some foreign idea foisted upon us by Western agencies such as Planned Parenthood. In his book, A Study of Abortion in Primitive Societies, Georges Devereux, a Hungarian-French ethnologist, describes how 400 pre-industrial societies sometimes encouraged, or even commanded abortion. Of course, there were others where abortion was met with resignation or even deep horror. According to Devereux, Maasai women had to abort the children of sick or old fathers. The Ashanti women of Ghana were expected to abort if they had been involved in premarital or adulterous affairs. The Baganda princesses were not expected to marry as this would cause tension between patrilineal and matrilineal succession lines—leading to widespread abortion. Among the Chagga of Tanzania, women were not expected to give birth after their daughters were married. They would therefore abort.

Of course, culture says nothing about normative ethics. The Kikuyu, for instance, killed twins. But in this age, that practice would be horrifying even to the most militant crusaders of African culture.

The story of abortion is a story of life. And from where I sit, life is so mysterious. You cannot just draw a line and say that “this is the beginning thereof”. But in overturning Roe Vs Wade, I think the Supreme Court has travelled back to the future. The back and future of a fascist church and state alliance.

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Reflections

Will We in Kenya Ever Respect Each Other’s Bodies, Lives and Rights?

Being queer in Kenya is dangerous and being denied the same rights and freedoms accorded to other Kenyans is our reality.

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Will We in Kenya Ever Respect Each Other’s Bodies, Lives and Rights?
Photo: Instagram/Sheila Adhiambo Lumumba
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Sheila Adhiambo Lumumba was buried clad in a white suit and a black shirt. Black was her favourite colour. Their coffin was also white, almost porcelain white, with gold-plated handles. To jog your memory, Sheila Lumumba was brutally murdered in their flat in Karatina in April 2022. Just a few weeks ago. Their body was discovered having been stabbed severally, bludgeoned, and sexually assaulted in a place they had presumed was safe—their home.

Home. Sheila identified as a non-binary lesbian. And preferred to use the pronouns they/them instead of she/her. That is what they wanted. I came across several media reports that described them as an alleged lesbian! No one needs to prove their sexuality or gender identity to anyone. Sheila knew who they were, and so did her parents and relatives who mattered to them.

Here is a quick tutorial for those unaware of pronouns and the term non-binary. Non-binary is an umbrella term referring to individuals who experience gender that is neither exclusively male/female nor in-between. Sometimes gender non-conforming and non-binary are terms used interchangeably. Hence the use of they-them as pronouns. For example, Sheila used they-them to identify themselves. LGBTQ or even queer could be used as a collective term if you struggle with the non-binary concept. However, it would be respectable to address a person with their preferred pronoun – they-them, she-her or he-him. Class dismissed.

You might say, wacheni! Hawa watu are making it complicated to understand. However, the concept of existing outside the female-male binary also existed in some African cultures. In Transgender History and Geography, G.G. Bolich writes:

“Before the implementation of rigid European rigid binaries, within the Dagaaba tribe of Ghana, Burkina Faso, and the Ivory Coast, gender identity was determined differently. Shaman Malidoma Somé of the Dagaaba says that gender to the tribe is not dependent upon sexual anatomy. ‘It is purely energetic. In that context, one who is physically male can vibrate female energy and vice versa. That is where the real gender is.’ The Igbo of Nigeria, also in Western Africa, ‘appear to assign gender around age 5’. In Central Africa, the Mbuti do not designate a specific gender to a child until after puberty, in direct contrast to Western society.”

Sheila may have looked female, but how they felt and presented themselves daily came from a place deep within themselves. It made them be at peace with how they were created. Who are we to argue with that? Sexual orientation is about who you’re attracted to and who you feel drawn to romantically, emotionally, and sexually. Gender identity is about who you are. Diversity is a delightful thing—just look at the nature around us. Why can’t we see one another as beautifully and wonderfully made?

Sheila was also beautifully and wonderfully made, the eldest daughter to John and Millicent and elder sibling to Derrick. Yet Sheila’s killers did not see them as beautiful or wonderful. They did not see them as a daughter, as a sibling. Their killers probably didn’t like the fact, that alijijua and how they presented themselves and so they sought to put Sheila “right”. These men chose violence instead of knowledge and thought the best way to understand Sheila was with their penises and not their minds. But Sheila was a strong person. They were a foodie who enjoyed working out and was deliberate in how they consumed the food. You can tell from the photos online they loved how they looked.

We are yet to know what happened within Sheila’s home, but they did not deserve the rape, the stabbing, the beating, and bleeding to death. We know it was not one man but many cowardly men who ended Sheila’s life. There was corrective rape that took place. Let us call it what it is. Let that sit with you.

Kenya is not safe for women. It is even more dangerous for queer women. There is no haki iwe ngao for them to even safely report the abuse and harassment they have to endure daily. Our streets are hard for our women. Why are we as a nation so threatened and insecure about our women? Why are we as a society intimidated by individuals ambao wanajijua or choose not to conform, those who choose to be different? Why are we happier saying we are trying, yet the fruits of our failure are evident to all? Why do we want to be seen to be surviving rather than thriving? Why are we scared of ourselves? And why do we quickly resort to violent words or fists when we see individuals walk into their own?

Sheila had walked into who they were. But, to her assailants, that was not the done thing. We despise umama (femineity), and reward it with unyama. Just look at the language used against every female political aspirant in the run-up to the elections. Why do we hate our girlfriends, wives, mothers, daughters, sisters, aunts, nieces and grandmothers?

You can’t tell me otherwise because Kenya would be a safer space for women if this were not true. But, heck, we’ve added the blood of a murdered Olympian onto our hands. Even Agnes Tirop’s hard-earned success brought no peace to her abusive marriage. First, Tirop was cheered on as she ran for Kenya but ignored when she wanted to run for her life. Then, Damaris Muthee, another athlete, was killed by her boyfriend ten months later. Let’s add 19-year-old KIMC student, Purity Wangeci to the list of murdered women, whose death is making the headlines as I write this.

In March 2022, a female driver was assaulted in her car. Ironically, on Wangari Maathai Road. Her piercing screams did not bring safety but instead brought out smartphones and octopus hands that groped and invaded her body, bringing up the latent fear women constantly carry to the fore. We bully our women on the streets, on the roads, on public transport, in the workplace, in schools and universities, and even in places of worship. And we kill them in their homes.

Incidentally, this was not the first time Sheila had experienced violence in their life. The Lumumba family were victims of the post-election violence of 2008. They lived in Naivasha at that time. Sheila’s dad, John, ran a successful bar in addition to working at a nearby lakeside county club. Millicent, Sheila’s mum, ran a shop. They didn’t believe that their neighbours would turn on them. The Lumumbas were known to all. But when they fled Naivasha for Nairobi, they left with nothing but their lives. They lost everything. Everything. The Lumumbas are suffering a more profound loss than the loss of material things. We as a nation know the pain of 2008. We as a nation almost lost Kenya, and it seems that we forget that we all grieved.

In a recent piece that appeared in the East African Standard, Clay Muganda stated that it was time for Kenya to have a serious conversation about the queer community. I was almost grateful for that piece, but Clay chose to misgender Sheila, missing the opportunity to educate his readership and disrespecting Sheila. He stated that homosexuality in Kenya is illegal, yet it is not. Homosexual sex is, but just to let you know, ALL sex that doesn’t result in conception, as per Penal Code 162, is illegal. He described us, Sheila included, as entitled and said that we should stop playing the victim card and accept that not all will like us.

Sheila is now a victim, and their murderers didn’t like them. Their death hit the LGBTQI+ community hard. Being “allegedly” queer in Kenya is dangerous. The fact that you can be denied the same rights and freedoms accorded to other Kenyans is our reality. At least six other murders have occurred in the last two years, and the murderers roam free. Even before the pink and white roses that draped Sheila’s grave had begun to wilt and dry, there was another brutal attack on a 50-year-old intersex person who was found raped and murdered in Cherang’any, Trans Nzoia.

The police response is lacklustre, almost to the point that it feels like a queer death is almost deserved. Sadly, this response is mirrored in the press and in the society in general. We are invisible and described as “none-issues” in life and death. Families sanitise the funerals of queer community members, and the “gay” is swept away. This form of erasure is an insult to the deceased’s legacy.

I applaud Sheila’s parents because they saw their child for who they were. Sheila’s coming out may have been hard to swallow, but they saw Sheila in the way they wanted to be seen. How Sheila chose to present themselves was a known fact by cousins as well. Their funeral was attended by busloads of members of the LGBTQI+ community who descended upon the ancestral home in Gem and supported the Lumumba family in laying Sheila to rest.

Sheila was surrounded by love and loved people. They spoke their mind and told it like it is. They were headstrong, disciplined, funny, and enjoyed having a good time. Sheila also loved reggae. They were also growing and learning, realising that adulting was not easy, and they had to work hard and navigate a country that doesn’t protect its women, queer or otherwise.

Research conducted in 2020 by the National Crime Research Centre established that the number of Gender-Based Violence (GBV) cases recorded between January and June 2020, saw a 92 per cent increase in violence compared to the previous year. These were incidents of rape or attempted rape, sexual offences, defilement, child marriage and murder. As you digest that 92 per cent increase, consider this: female victims accounted for 71 per cent of the roughly 2,400 cases reported. The report puts it bluntly, stating that ten females are assaulted daily. So, do you think we still love our women?

Let’s not forget the verbal assaults and harassment that don’t make the data sets. A friend of mine revealed that she was accosted by a police officer who asked why she was harassing men by showing off her cleavage. His hand was on his penis as he spoke to her. She discovered that she was not the first woman he had harassed this way at this particular location. This lewd encounter can be echoed a hundred thousand times across the country. What do you do when the people who are meant to protect you also harass you?

Kenya is not safe for its women, for all men are a potential threat. Me included. Our muted ears and whimpered reactions have driven women into becoming invisible and silent bearers of pain, walking around in fear so that they can get home in one piece. But is home safe? Maybe Sheila should answer that?

We are turning into a nation where those who stand out or speak out or choose to be different, and more so our women, find themselves abused or assaulted or with bludgeoned bodies, shattered spirits, skittish steps, and deflated dreams. And sadly, those who speak out against this carnage are branded noise-makers, prostitutes, feminists or puppets. And this is how subtle efforts to champion truth are being silenced. Haki is no longer our ngao.

The International Day against Homophobia, Biphobia and Transphobia is commemorated on May 17th. This year’s (2022) theme is “our bodies, our lives, and our rights”. This day is important to the LGBTQI+ community here in Kenya and worldwide. However, following Sheila’s death and the continuum of violence that targets women, queer or straight, this year cannot be celebrated in a silo. Queer persons in Kenya will still not matter. Furthermore, female bodies, lives and rights will remain unprotected, punches and penises will continue proclaiming the patriarchy, and liberty and freedoms will be moralised.

Sadly, Sheila Lumumba will join the army of fatalities, thanks to our thin memories and lackadaisical law enforcement, as we choose to ignore the bloodied hands that stained Sheila’s walls.

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Reflections

Kenya’s Social Justice Movement: Remembering Our Unsung Heroes

Gathanga Ndung’u commemorates activists whose lives were snatched away by Kenya’s brutal capitalism. Activists who launched a war against a system of impunity, a world one hundred times larger, mightier, and older than them, but, Ndung’u explains, that each of them mounted a defence to protect and defend their comrades and communities.

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Kenya’s Social Justice Movement: Remembering Our Unsung Heroes
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The independence struggle of 1920 to 1963 against the colonial government was followed by the second liberation struggle from 1982 to 1992 against the dictatorship of the President Daniel Arap Moi. This was a fight for democracy, a just constitution and a fight for civic space. This culminated with repealing of Section 2A of the constitution in December 1991 which had made Kenya a one-party state for almost a decade. The new, or third wave of liberation has been carried out by social justice movements in Kenya together with a multitude of organisations.

This reflection focuses on three committed activists whose lives were cut short by the same system that took our independence heroes. They dedicated their lives in the new wave of struggle which has been characterised by extra-judicial executions and enforced disappearances by the police, the shrinking of democratic space, high level corruption, the ever-widening gap between the poor and rich and the privatisation of basic services.

The Social Justice Centres’ Working Group (SJCWG) is an umbrella body of more than sixty social justice centres based in the communities across the country. It was formed early in 2018 when individual grassroots human rights centres decided to come together to tackle the many injustices in the country and more so in the poor urban areas. The Social Justice Centres Movement has also suffered losses in its five years of existence with the lives of three human rights defender (HRD’s) ending in tragic ways. The richness of life is not through material accumulation, but rather through the impact we make on others.

In this post I celebrate the lives and activism of our fallen comrades as a testament to their work and in the hope that they did not die in vain, and they can inspire others.

Carol ‘Mtetezi’ Mwatha

Carol Mwatha was a mother of two and was a vibrant and committed human rights defender who dedicated her life to serving the community. She worked to ensure that the streets were safe for the youths who had been a target of police killings, arbitrary arrests, extortion and harassments. She started her activism long before the formation of Dandora Community Justice Centre (DCJC) and she had created an elaborate network with other community organisers, activists and organisations fighting for the same cause.

The truth about her tragic end will probably never be known due to the manner in which the state agents hastily created what seemed like an obvious cover up and disseminated the story to media houses without reaching out to the family first, as protocol would have demanded. This was a deliberate move to control the narrative. Carol went missing on 6 February 2019 only to be found at the city morgue on 12 February registered under a wrong name. Her family and friends had been at the same facility on the 8 and 9 February and didn’t find her among those that had been brought to the facility from the day she went missing.

The police story lacked credence from the very beginning. The mortuary attendants failed to disclose the officer in charge on the day she was purportedly brought to the morgue. The post-mortem was delayed, and even then, the wrong name was suspiciously entered – Carolyn Mbeki – and the police went ahead and informed the media of her ‘discovery’ on 12 February even before informing the family.

Carol was a visionary leader with excellent organisational and mobilisation talents. The idea of forming a centre in the community was taken in her house at an informal meeting with her comrades. She saw the need to have a community centre to bring different community organisers into Dandora under one umbrella and speak in one voice. She sat down together with her comrades from DCJC and committed to organising and mobilising her community against the many social injustices they experienced daily.

As a mother, Carol rejected the idea of bringing-up her children in a context where injustices are normalised. To this end, she committed to fight extra-judicial killings, police extortion, arbitrary arrests and harassment of youths which were and still are a common trend in Dandora and other high-density and poor neighbourhoods. She knew what she was standing against but her zeal for a safe Dandora superseded her fears. Alaman James, a long-time friend of Carol notes she was a frequent visitor to Kwa Mbao Police Post and other police stations in Dandora as she tried to secure the freedom of community members who had been arbitrarily arrested. Alaman recounts how Carol – his church friend turned activist – spent countless hours going late at the night to police stations and from one organisation to another trying to help victims. Her resolve to follow-up police killings set her against powerful forces which were used to acting with complete impunity. The establishment of DCJC in the community definitely sent a strong a message which made these forces feel threatened.

Faith Kasina, another close friend of Carol and a coordinator of Kayole Community Justice Centre, described her as a mother figure to most of her comrades. Despite her lean frame, she had wide shoulders for her comrades to lean on when they needed her. She was an elder sister, a mother figure to some, and a close confidant to many. Faith talks of a comrade who would frequently reach out to her friends and comrades just to make sure they were well. Through her friends’ accounts, I learnt about a leading comrade who stood against overwhelming odds no matter the outcome.

Carol Mwatha launched a war against a system of impunity, a system one hundred times larger than her, mightier than her, older than her, but she mounted a defence to protect her children and the community where she lived.

Henry Ekal Lober “Turu”

On 21 February 2021, we lost another committed comrade. Members of the social justice movement learnt of his death after a six-day search ended with the tragic revelation. Ekal had lost consciousness and was taken to Kenyatta National Hospital. Members of his social justice centre had spent days looking for him without help from the hospital administration. With the lethargy and negligence in our public hospitals and because he was not accompanied by anyone to the hospital, he was left to the mercy of fate. He succumbed to his condition and died.

Ekal or Turu as he was known by many, hailed from Loki in Turkana hence his alias. Just like many in Mathare, Ekal found a second home there and he would spend the rest of his years in the community. He came to Nairobi looking for a promising life after leaving his pastoralist family hundreds of kilometres from the capital. Mathare welcomed him with open arms, and he ‘fell in love’ with the place, never to return home.

Ekal had slurred speech, a limp and wound that had become septic overtime, and he struggled with both alcoholism and the institutionalised poverty in the ghettos of the city. Despite these problems, he was a forever jovial, brutally honest with everyone and coherent when it came to articulating issues of injustices caused by the system. For this, some referred to him as professor.

Mary Njeri, one of the administrators at Mathare Social Justice Centre (MSJC), recalls her moments with Ekal with nostalgia: “Even though he struggled with alcoholism, he was smart and very clear when it came to articulating his thoughts and what he envisioned for the community. He always carried a pen and a book for jotting down ideas and reflections and a magazine to read in his free time. I sometimes wondered what he would be scribbling and one day out of curiosity, I decided to have a look in one of his notebooks …I was shocked to learn that Ekal was conducting one-man research on Water Accessibility in Kosovo, an area of Mathare where he lived. He did all this with zero budget. Despite his failing health, he would criss-cross the narrow alleys to interview residents on his topic.”

On this particular day, he came straight to Njeri. She wrote and translated the conversation that ensued:

Ekal: Hello Njeri

Njeri: I’m fine, what about you?

Ekal: I’m fine. Are you still in college? Do you know how to use a computer?

Njeri: Yeah, I know how to.

Ekal: (Unfolding his research papers), I would like you type up my research report on water.

Njeri was left speechless after going through the content of his research. It was written in a very clear manner capturing most aspects of the water crisis. Ekal was proactive when it came to action and chose to do what was needed without waiting for donors to fund his work. This is the true spirit of an organic community organiser. Apart from this, he always wrote articles which he would ask comrades to type for him. Yet he was an intellectual that got smothered by the system, slowly sucking his dreams out of him, leaving him hollow and broken.

Ekal was a committed member of Bunge La Mwananchi (People’s Parliament). It is from this space where he became friends with Gacheke Gachihi one of the founder members of MSJC. Ekal floated the idea of forming a JM Kariuki Social Justice Centre named after Josiah Mwangi ‘JM’ Kariuki, who was an activist and politician assassinated during Jomo Kenyatta’s regime. MSJC would later be formed in 2014 to document and fight extrajudicial killings, enforced disappearances and other social injustices.

I came to know Ekal in 2020 at various functions organised by MSJC. In all these meetings, he always created ‘beautiful trouble’, the kind of trouble I call, ‘necessary trouble’. He would not let the meetings proceed without following protocol. He would speak his mind and oppose anything that he deemed not to be in the spirit of true and radical justice.

According to Njeri, Ekal wouldn’t hide his disappointments and offer his unsolicited criticism and would repeat it over and over until his counsel was heeded. And of course, it was always positive criticism. Through this approach, he was instrumental in MSJC’s growth and helped to ensure that the centre did not veer off from its core and founding mandates.

Oyunga Pala, a Kenyan journalist, columnist and an editor, teamed up with Ekal and became a committed member of the Mathare Green Movement where, with Ekal, he embarked on an ambitious project to clean and green Mathare. Hailing from the arid areas of Turkana in Northwest Kenya, Ekal understood very well the role trees play in our ecology. He invested his time in increasing the tree cover of Mathare knowing very well that most of the trees wouldn’t benefit him personally but would serve the generations to come.

The Mathare Green Movement went ahead and transformed garbage sites and polluted areas into small parks. These small parks serve as oases of hope in Mathare giving us a sneak preview of the Mathare dream that Ekal believed in. In his final tribute to Ekal, Oyunga Pala describes the futuristic dream that Ekal saw for Mathare; the future where youths could craft their destinies by being proactive in shaping and charting a new path full of hope. Ekal was one of the few comrades who was proactive, pragmatic, brutally honest, and committed to the struggle with a jovial soul. He always strived to rise above the system’s dragnets stifling his spirit.

This is my ode to Ekal:

May the homeless birds from the wilderness find a tree to perch on in Mathare,

from a restless journey may they find home, an oasis of peace and comfort.

May your trees be home to thousands of homeless birds,

ejected from their ancestral homes due to ecological disruption.

May your trees clean the foul air in Mathare,

the foul air of ethnicity, crime, despair and hopelessness

 and breathe out fresh air rich in hope, a brighter future and common goal of prosperity.

May the roots of your trees hold together the soil of Mathare,

the soil with the blood of Mau Mau and many slain youths.

May that rich history be held together by the roots of your trees.

May that soil never be eroded or washed away.

Let your trees hold the rich history for us and for the future generations.

Alphonce Genga

On 4 February 2022, the Social Justice Centres’ Movement was thrown into yet another deep mourning after the sudden death of Comrade Alphonse Genga. Alphonse was a 21-year old comrade of Githurai Social Justice Centre (GSJC) whose demise occurred four days to from his 22nd birthday.

Brian Mathenge, a close friend, and a colleague of Alphonse paints a picture of a young, vibrant comrade fresh from school, who decided to make an impact in his community. He chose the unfamiliar route, to commit his life to protect the weak, the marginalised, the voiceless and the poor in Kenya. Within a year, Alphonse was a powerhouse in activist circles due to his sincere commitment. He used art to reach out to more community members and to educate, organise and mobilise.

Alphonse would later join the Mau Mau study cell organised in Githurai. Through the ideological grounding classes he attended, he joined the Communist Party of Kenya (CPK) where he dedicated his time to reading and understanding Marxist theory. This sharpened him politically and he would later use the same knowledge to reach more people from his area of residence in Roysambu. He preached and practiced socialism.

Alphonse wore many hats, but if there is one aspect that defined him it was his commitment to ecological justice. He took part in the annual climate strike, he had joined several ecological justice groups such as Eco-Vista, Ecological Justice League, Kasarani Ecological League, Green Jewel Movement and Githurai Green Movement among others.

During the posthumous birthday and celebration of his life, one of his friends confessed that Alphonse had quit football, giving up a talent that he had nurtured since childhood so that he could spend more time in the fight for his community in Githurai.

On 2 February, he was involved in a road accident. He suffered an internal head injury and a broken arm. He was rushed to Kenyatta National Hospital (KNH) where he was left unattended for more than ten hours, yet he was a critical condition. Alphonse was in acute pain; his centre members were in panic in the hospital compound. It was only after a confrontation between his friends and the hospital staff that the doctors attended to him although with great lethargy. At the time of his death, his broken arm had not been attended to, more than 36 hours after admission. It was this kind of neglect in a system dominated by privatised healthcare that gradually and painfully squeezed the life out of Alphonse. The same healthcare system he was fighting to improve cut his life abruptly short.

It is an agonising fact which makes one reel with pain to learn that a public hospital such as KNH has a private wing to attend to their well-to-do clientele while the general populace is segregated in general wards without enough medics, nurses, drugs and beds for patients. Only the rich get services as they can afford to pay for them while the poor daily die in droves. Privatisation of the healthcare system in the country has turned the entire system into a for-profit venture.

To give a befitting tribute to our fallen comrade, it is the responsibility of every comrade to demand a total overhaul of the cartel-ridden healthcare system and replace it with a service that serves the people.

In the spirit of Alphonse Genga, it’s NOT YET UHURU until our healthcare is liberated. Let’s ensure we fight for justice, dignified lives, and a better healthcare system as comrade Genga lived doing.

This article was first published by ROAPE.

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