I am the founder and Executive Director of Support Initiative for People with atypical sex Development (SIPD Uganda). SIPD is a grass roots, non-profit human rights organization in Uganda which, through community outreach and engagement, provides reliable and objective information on atypical sex development issues. We particularly address a need for organized medical and psychological support, public education as well as advocacy for human rights protection of intersex children and people.
Formal organizing in Uganda is now in its ninth year and this has helped to break the silence and to empower intersex children and youth. We build the knowledge base of those who care for them around intersex issues, as well as related health and rights issues. However, while this engagement is having a direct and positive impact on both carers and the intersex children they look after, there is the lingering hitch of not having enough active voices bold enough to persistently keep these issues on the policy negotiation table. This is not unique to Uganda; the situation is quite similar across the East African region. Being politically labelled as LGBTI and part of the gay rights advocacy discourse also has its contribution to pushing intersex people in Uganda further to the margins, keeping us only visible through a homosexual lens.
Thousands of intersex children and youth are faced with double marginalization, having to deal with both intersex stigma and extreme poverty. I have had contact with over 1,000 intersex children, youth, and young adults, mostly through personal and organizational outreaches.
In Uganda, the traditional way of dealing with perceived sex development differences, often perceived as “abnormalities”, has largely been staying silent – and wishing them away through various kinds of traditional rituals, which often meant killing the intersex infants in question. This was, for decades, considered to be both the best and normal way to handle intersex births. Normally, just being a girl or a boy in Uganda and the East African region generally – without any sex development differences – comes with more than enough cultural, religious, and political expectations, demands, impositions, and prejudices. Prejudices that form most of the gender inequities and human rights issues we still battle with. The indeterminate state of sex that defines intersex people therefore creates even more complex cultural and religious prejudices. The initial treatment of an intersex birth in Uganda will often be silence and secrecy. The family will isolate the child from the general public. In most cases, the mothers of such children will be frowned upon. Usually, superstations loom large as their families consult witchdoctors, mediums and traditional healers for a solution. In many instances, the mother will work with either a traditional medicine practitioner or some other ally to kill the child.
In trying to fix the appearance of children’s genitals, grave mutilations have occurred, which have left these children scarred and dysfunctional for life – for most with no chance of ever getting these errors corrected. This is because there is overwhelming pressure at all levels (family, community, spiritual, cultural, and political) to have a child with a body that conforms to the normative “male” or “female” body. A pressure so overwhelming that parents will often kill their intersex babies or surrender them to harmful mutilations.
The approach that is used by the “elite” is a concealment approach where an intersex child will be hidden and “offered” up for surgery without warranting them, and without proper surgical or psycho-social support facilities.
One traditional birth attendant I interacted with however, tells how quickly and successfully attitudes can change through awareness raising and community trainings, challenged her own views and improved her service with her patients.
In another encounter, a teacher tells the story of one of his pupils who was constantly aggressive, “dressed inappropriately”, and often used offensive language. In addition, the student constantly missed classes. One occasion, while being punished, the teacher discovered that the boy was intersex and his behavior had been a distraction mechanism to keep his peers in fear of him and at bay. After several interactions with the student, providing a safe space for self-expression and determination, I learnt that the student is now more confident and has changed his behavior. He still badly needs to remove his unwanted breasts, which he hides using very harmful methods. The teacher says, “Our eyes are opened to what was a mystery to us. We now at least have some answers to give and an idea of how to respond to students with such needs. It is important to give them a chance to speak about it without fear.”
My own outreach to religious leaders promises that if we are relentless in our educational work, to change hearts and minds, we will make incremental and lasting attitudinal changes concerning differences in sexual development. I have seen faith leaders “like” affirming posts on Facebook and respond when a disturbing post about an intersex child or adult has been posted. It has also been interesting to see the willingness – through both personal and organizational engagement – of faith leaders to re-evaluate some of the moral, religious, and cultural teachings they promote. There is a slow transformation from harsh sidelining to more compassion, love, and care for those who are different, including intersex children, youth, and adults.
Most importantly, in Uganda, we have brought the idea of collective responsibility, and community parenting and child protection, to the faith fraternity. This is helping in forming safe spaces within these spaces. Pastors and teachers are an intrinsic part of Ugandan culture and social fabric, and cannot be ignored when thinking of meaningful and sustainable campaigns for recognition, safety and dignified livelihoods. This approach to activism is helping to keep Ugandan intersex babies safe from mutilations and infanticide.
The main challenge remains the sustainability of these gains, which take place against a backdrop of poverty and hunger. If you can imagine the times you have felt famished and quickly had to interrupt your schedule to reach for a quick bite, or a glass of water, or tea – then you can imagine what it’s like to go hungry for days, weeks, even months on end without anything to eat, coupled with the fear of exposure. This keeps you confined and isolated from the rest of society because you are different or because you have a child that is different, and this would draw attention that is more painful than the hunger you suffer. It is being caught between a rock and a hard place.
Intersex people living in Northern Uganda for example, are used to extremely harsh and impoverished living conditions, and having to go hungry for weeks and extremely ration their food. Clients from other parts of the country have limited access to land and they can provide services to their communities, but they don’t know how to. SIPD Uganda is undertaking a livelihood program for these mothers and intersex youth to equip them with skills that can enable them to better use the land at their disposal – however dry it is – and the natural talents they have. This will stop parents, who may see their children as a burden and social curse, sending their children to rebel camps or abandoning them in run-down mud huts.
We constantly see the extreme poverty that cuts across most intersex people’s life situations and greatly contributing to the violations they face, of abuse after abuse, mainly because of the socio economic status of the mothers of the intersex children or intersex youth. It is justified to conclude that just creating awareness and training on human rights is not enough. There is a need to attend to clients’ quality of life. Most injustices are born from lack of power or misuse of power, and having no economic power to even feed oneself, is the most fertile ground to breed injustice.
We cannot constantly and intently determine that training and outreach – as critical as they are in availing information and safe spaces to share – is all our clients need to change their attitude, their lives, and their communities into better, accommodating, and supportive ones. Tackling poverty and livelihoods is part of the pursuit of social justice for intersex children and people in Uganda and the region.
Many people in Uganda – including intersex people themselves – speak of intersex people having “two private parts”. But humanly speaking, this cannot occur in the nature of a human being. A human being cannot have two sets of genital organs (male and female) which fully function at the same time. What a human being will have are genitals that are either indeterminate, or ambiguous in appearance and functionality – lying in between female and male. Still, an intersex person may have a set of genitals for one sex but have internal organs for another sex – for example an individual with male genitals may have internal ovaries and empty testicle sacks or one with female genitals may have internal testes instead of ovaries, or in some instances, may have one ovary and one testis (a variation known as ovotestes).
As an activist traversing between intersex and gender variant realities in Africa, I daily seek to unpack myths around non-binary bodies, and non-normative gender stereotypes, and while it has been one of the most fulfilling things I have had to do, it has also been the most dangerous and most frustrating! This is because for intersex individuals in Uganda, there is no real safe place. The conservative, elusive, and vehemently repressive society considers us to be bisexual or gay, while the gay community considers us to be aliens and objects of curiosity who must explain our association to their cause! We must prove our “maleness” or “femaleness” to them, because the intersex body is still a source of great discomfort even among the LGBTI community. This stereotyping remains very tormenting and stigmatizing.
Having been born intersex in Uganda, I know firsthand how those desperate to justify social injustices against people like myself who are different will either equate or compare us to every falsehood imaginable. Who can determine the extent of one’s womanhood or manhood except the individual in question? And what if one is neither man nor woman? Because that too does exist! Which ‘expert’ will determine for me which side to stand on. Has God has crafted me uniquely in between, or all-embracing? The plain question is: why is diversity too painful to embrace? After all, diversity is a divine key characteristic of the universe.
One of the most sobering statements I have heard from a health worker in rural Uganda was this: “I have been telling people all the time that these children, these people are sick from need.” This is echoed by all our medical and legal allies who provide some limited care to intersex people in Uganda. This brief statement reveals the heavy uncertainty among thousands who struggle to barely meet the basic day-to-day needs before they can attend to the burden of acute stigma and discrimination of their intersex bodies – or different bodies – or bodies of their children. Intersex bodies can become a curse to an impoverished intersex person, or the mother of an intersex child who is not sure if such a child even has any future in the normative cut-throat society as she knows it. It is a cry for help, to outwit the easier alternative of killing these allegedly inconvenient intersex children – supposedly for their children’s own good. There is an undeniable cry for help, help for a double marginalized intersex population that often also identifies as gender non-conforming, to be able to help themselves with a little push to build the capacities they already possess and release the potential that is within them, using materials and capital close to them.
Responding to this cry is our only way forward in building a critical mass of first-hand rights advocates and change agents. It has rightly been said in foregoing social movements that no change is real or sustainable without the holistic empowerment of those directly concerned. It is certainly no different with the intersex children and people in Uganda.
– by Julius Kaggwa, executive director of SIPD Uganda.
Julius was recently interviewed by The Guardian in the article “I’m an intersex Ugandan – life has never felt more dangerous”.