BASELINE SURVEY O N INTERSEX REALITIES IN EAST AFRICA iii
TABLE OF CONTENTS
|List Of Acronyms||Iv|
|Understanding Our Journey: Background of the Baseline Survey||1|
|Goal of the Baseline Survey||1|
|Objectives of the Baseline Survey||1|
|Scope of the Baseline Survey||2|
|Objectives of The Survey||3|
|Methodology And Processes||4|
|Challenges to the Process||6|
|Defining Intersex: What Then Does It Mean To Be Intersex?||8|
|Impact Forecast of the Baseline||10|
|Key Findings and Analysis||10|
|Legal and Human Rights Realities||10|
|Cultural, Moral, Social and Religious Discourses||14|
|International Advocacy Tools Specific to the Rights of Intersex People||27|
|Conclusion and Recommendations||29|
|About SIPD – Uganda||32|
LIST OF ACRONYMS
SIPD –Support Initiative for people with congenital disorders
DSDs – Differences of Sex Development
HRAPF – Human Rights Awareness and Promotion Forum
TBAs – Traditional Birth Attendants
Understanding our journey: Background of the baseline survey
Support Initiative for People with Congenital Disorders (SIPD –Uganda), its clients, allies, and donors have had discussions around the possibility of conducting a Baseline Survey on intersex realities in Uganda and the East African region for a long time and it is our hope that this initial baseline survey focusing mainly on Uganda, Kenya, and Rwanda lived realities, will translate into other baseline surveys across sub- Saharan Africa.
Goal of the baseline survey
The purpose of the baseline survey is to “identify essential indicators to capture in describing the current context of the lives of intersex people and the state of organizing of intersex communities in Uganda, Kenya, and Rwanda.
ˠ Monitor gains and losses and how they relate to changes in context or to actions taken by actors for and against intersex rights;
ˠ Analyze strengths and weaknesses over time, as the basis for strengthening organizational capacities and strategies for individual organizations and a cohort of groups with similar goals;
ˠ Assess and begin to minimize divergences between services provided and those that are needed by Intersex communities; and
ˠ Build from the knowledge that if the technical assistance can be provided regionally, processes will be more horizontal and less hierarchical and activism as well as engagement will be more visible.
Objectives of the baseline survey
ˠ To identify essential indicators against which to describe the current context of the lives of Intersex people and efforts to organize Intersex people in Uganda, Kenya, and Rwanda;
ˠ To gather information in relation to each of these indicators and;
ˠ To establish a framework for ongoing gathering of Baseline Information for the region.
SIPD Uganda is the leading team in this baseline survey. To achieve the above objectives, the team used both qualitative and quantitative data collection and analysis methods.
ˠ Legal and policy perceptions
ˠ Landscape of Intersex organizing
ˠ Lived realities
ˠ Cultural, social and religious discourses
ˠ Health discourse
ˠ Sex determination, gender identity and sexual orientation discourses
Scope of the baseline survey
The survey looked generally at Uganda, Rwanda, and Kenya where SIPD operates and/or has alliances. The findings of this study were then juxtaposed with a few other Sub Saharan African countries, such as Zimbabwe, and Zambia as well as other international narratives.
Much of the literature on intersex children/people provided a perspective on gender and sex vis-à-vis intersexuality. These perspective show the socio-economic correlations, which further promote discrimination, torture, and even the threat of facing death for most intersex children and people in the region.
The baseline survey started in Kampala district where initial meetings with intersex people, their parents/guardians were held and later data collection was extended to 50 districts of Uganda where SIPD works as well as to 2 intersex people and 2 partners in Kenya and 1 partner in Rwanda. We hope that every three years a review will be done to update this baseline.
OBJECTIVES OF THE SURVEY
To contribute to broadening and deepening of understanding of the scale and implication of violence, abuse, neglect, exploitation and discrimination affecting intersex children, their special need of protection measures by amplifying their situation and the factors that contribute to their situation as a basis for planning programmatic interventions.
ˠ To explore the social economic challenges faced by their intersex children and their parents
ˠ To find out the existing legal framework backing the rights of intersex children and people.
ˠ To show the relevance of social protection concerning the situation of children born with Differences of Sex Development.
ˠ To identify essential indicators against which to describe the current context of the lives of Intersex people and efforts to organize Intersex people in Uganda;
ˠ To gather information in relation to each of these indicators and;
ˠ To establish a framework for ongoing gathering of Baseline Information.
METHODOLOGY AND PROCESSES
To achieve the mentioned objectives, SIPD used the following combination of methodologies:
Data Collection: This included primary and secondary data collection through desk reviews, personal interviews, and consultations, with a focus on understanding the views, attitudes and opinions of intersex people in Uganda, Kenya, and Rwanda and other stakeholders including but not limited to medical practitioners (Doctors and Traditional Birth Attendants), legal experts, counselors, psychologists, religious leaders, local leaders, educators among others. The intersex baseline survey started with a meeting in Kampala that brought together a total of 35 intersex people and their parents. This was followed by verification meetings in Kampala and Kigali to receive feedback from participants. Resources and sources of information, partners useful in the provision of information on focus areas, indicators that may have been left out were all discussed in these meetings.
The Data collection processes included:
ˠ Focused group discussions – Sometimes discussions were held in groups since all of them had the same goal
ˠ Review of literature – Literature was reviewed for a clear correlation to be established
ˠ Home visits – Home visits were made to different intersex families in Uganda in order to have a clear picture that depicts an intersex ways of living in Uganda.
ˠ Telephone calls – Telephone calls were carried out in seeking for clarity on different matters that were reported since some could have information gaps
Area of study: 30 districts of Uganda i.e. 120 participants across North, Western, Eastern and the Central regions respectively. As well as Kenya and Rwanda – i.e. two (2) intersex people and three (3) partners.
Data Analysis: The researcher(s) make analysis basing on lived realities of intersex people themselves (using a semi structured research interview), existing literature books on intersexuality, and interviews with medical practitioners, counselors, legal experts, local leaders, religious leaders among others.
All participants attended a validation workshop in Kampala where the report was presented and discussed as well as planning for next steps for the draft baseline report presented and future actions for follow up by key partners, organizations and activists.
Final baseline report
There was integration of feedback from all meetings and this sustained in the production of the final baseline report that includes photos and videos that capture the findings.
Communication of findings is planned through dissemination of the final baseline report to partners, activists, hospitals, schools organizations and all other relevant stakeholders.
Scope of follow up
It is envisioned that there will be follow up and review of key indicators every after three years.
CHALLENGES TO THE PROCESS
Information gaps – This was a challenge because respondents were sometimes unable to give all the information that the interviewer wanted since they had not yet come out.
Impact projection – Ensuring that the process and this report will reach the hands of those able to use it to benefit the intersex community in Uganda and the region.
Sustainability – The challenge of raising funds to ensure that there are follow up studies every after three years.
UNDERSTANDING THE CONTEXT AND THE ENVIRONMENT
In all three countries in this survey, namely, Uganda, Rwanda and Kenya when an intersex child is born, the family treats the birth with extreme secrecy – with intervention strategies limited to close family members. In all the responses we received, families will isolate the child from the general public. As standard treatment, the mother of such a child will be frowned upon, and most intersex infants will be killed shortly after birth. Those who are not killed face different forms of discrimination – for example, in Uganda intersex teenagers are forced to drop out of school and live a disempowered and secret life, often subjecting them to sexual violence in terms of curiosity rape and other forms of sexual and physical harassment. In Kenya, the family will send the intersex teenager away from home and from the village to find anywhere else to live and caution them never to return. In Rwanda, a few intersex young people have sought refuge in Nyamirambo camp for LGBTI destitute people but have been forced to leave for lack of safety and relevant services. Some have resorted to suicide. Usually superstition loom large as families consult witchdoctors, mediums and traditional healers for a solution. What would appear to be a positive story is for a scanty number of intersex people born into wealthy families, who avail them with medical information and where needed sex re-assignment surgeries. Even in these cases, the doctors were quick to note that no one is sure if the surgeries done are the right ones or if they will prove useful to the intersex child later on in their life.
Women who give birth to intersex children are often considered to be witches or victims of witchcraft, and the intersex children are considered a bad omen to the family, which should be gotten rid of. The ridding takes the form of murders or abandonment. Many women are abandoned by their husbands and in-laws due to the news of such a birth. Most mothers of intersex children dump and abandon their intersex children for dead in pit latrines and lonely forest areas and run from their homes for fear of possible prejudice-driven crimes towards them by family or community members. It’s so unfortunate that the general East African society has always responded with denial, hostility and at best, silence, on these matters pertaining to sexual development and related health and rights concerns.
In recent years, children’s rights have developed into a major field of human rights, with children being recognized as critical priorities for legal focus, including those born with Differences of Sex Development. UNICEF has recognized the importance of children’s rights thus the Convention on the rights of the child. An official from UNICEF during a national seminar on United Nations Convention on the rights of the child (UNCRC) said “as important as needs of human rights, even more important is the need to recognize and protect the special rights of children, who are most vulnerable members of society. “
The critical question at the helm of this survey, which is echoed in most national findings is when will the various legal and human rights frameworks, which protect children’s rights and other at risk populations at international, regional and local levels also specifically include Intersex children and people (those born with Differences of Sex Development).
The birth of a new baby is one of the greatest wonders of nature and one of the most exciting events known to man. The first question that is usually posed by the mother or father is “is it a boy or a girl”, without this information the new parents cannot even formulate the second question which is usually “is he/she alright?”. Magnus Danielson (2005, 3) alludes to this initial social construction of gender and says plenty has been written about how boys and girls are treated differently, about how something as common place as the tone of the voice towards a person differs depending on what sex that person is. This may seem ridiculous changing my voice just because I am talking to a person with a penis, may be not but how are children who can’t be defined as neither boys nor girls be treated? What really happens when the midwife holds up the newly born baby and says, “congrats, it’s a……eh…. well….”. Sadly the reality is too traumatic to joke about and yet it is a true scenario for thousands of parents whose children are born this way the world over – East Africa inclusive.
DEFINING INTERSEX: WHAT THEN DOES IT MEAN TO BE INTERSEX?
Intersex can be looked at as a condition in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male or a person born with genitals that lie between male and female. It therefore reflects a combination of differences in the development of a person’s internal and external sexual and reproductive organs. For example a typical male is born with two complete testes and a penis that enables penetration during conventional sexual intercourse; passage of seminal fluids and urine. A typical female is born with two complete ovaries, a uterus, fallopian tubes, mammary glands that develop into breasts at puberty and a vagina that enables both menstruation and child birth. Being intersex is occupying the middle grounds between the typical male or female sexes.
Medically referred to as Disorders of Sex Development,” Intersex” is a general term for being physically or physiologically “between male and female”. Intersex people are born with a sex differentiation which makes the anatomy of their bodies atypical and their sex classification indeterminate. For many, it’s at the chromosomal level, others at the hormonal level and for the most obvious ones it’s at the genital level.
According to law students for reproductive justice in their article “ Intersex rights and reproductive justice” (2013 , 1) they defined the term intersex as to people born with sexual or reproductive anatomy that does not fit within society’s typical definitions of male or female and the intersex society of North Africa (www.isna. org) extends more on this definition and says being an intersex encompasses a variety of conditions, a person can be intersex in many ways and not all medical professionals agree on what constitutes an intersex condition, but people generally labeled as intersex include those who have;
ˠ Internal and external reproductive organs of different sexes
ˠ Internal reproductive organs that represent a combination of typically male and female organs (i.e. ovotestes)
ˠ Genitals that do not appear typically male or female (e.g. a large clitoris and shallow or absent vagina, or a micro penis with an opening in the scrotum that looks like a vagina and
ˠ Atypical chromosomal patterns, (such as XXY, XO or mosaic chromosomes) or a certain hormonal abnormalities such as Congenital Adrenal Hyperplasia or Androgen Insensitivity Syndrome.
Rainbow Health Ontario define intersex in their RHO fact sheet on intersex health as people whose bodies, reproductive systems, chromosomes and/or hormones are not easily characterized as male or female. This might include a woman with XY chromosomes or a man with ovaries instead of testes. Intersex characteristics occur in one out of every 1500 births (Handbook for parents, 2006). That means an intersex child is born every two days in Canada, five intersex children each day in the US and according to our reference doctors from Mulago hospital in Kampala, Dr. Laigong in Kenya, and Health Development Initiative (HDI) in Rwanda at least 2 children with intersex conditions are born every week. Estimates of the frequency of intersex status range widely, in part due to the cultural practice of concealment that ensures some individuals never know they were born intersex (Anne 2006, 59, 65) and in part to disagreements over the definition of what counts as an intersex configuration. Conservative figures place the frequency at 1 in every 2000 live births (www.plannedparenthood.org) while expanded definitions yield the estimate that about one in every 100 births is intersex (www.isna.org).
Dr. Thomas Muyunga, a sexual and health rights advocate (www.observer.ug), further supports this definition and explains that biologically, females have XX chromosomes and males have XY chromosomes, because in humans, the male gametes (sperms) contain X and Y while the female gametes (ova) contain X and X. So when the X from the sperm fuses with the X from the ova, the baby is XX and female. When the sperm releases Y chromosomes to fuse with the X chromosomes from the ova, the baby is XY and male. Yet, Muyunga says, some people may have an extra X or Y chromosome, sometimes the extra chromosome is hooked on the ordinary XY or XX chromosomes. Sometimes, intersex people have fewer chromosomes. They go on to say that within medical circles, the term “disorder of sex development” has replaced earlier terms such as sex reversal, hermaphrodite or pseudo hermaphrodite. (Clinic Guidelines for the management of Disorders of sex Development in childhood. 2006).
Intersex activist groups strongly disagree about the appropriateness of this pathological terminology (Koyama 2008) because people living with this range of conditions generally refer to themselves as “intersex”.
IMPACT FORECAST OF THE BASELINE
The baseline will inform all relevant stakeholders who design or contribute to the designing of human rights protection and/or promotion policies – i.e. government, and non-government institutions, other policy makers and legislators, activists, development partners, parents, healthcare and legal practitioners to consider the vulnerability and human rights implications faced by intersex people.
The survey is expected to amplify the outstanding duty to recognize and protect the human rights and dignity of intersex children and people as part of the global commitment to respect for diversity.
This survey should pave way for future research and interventions in the areas of gender, sex, law, and organizing in the East African region and broader Sub Saharan Africa.
KEY FINDINGS AND ANALYSIS
Legal and Human Rights Realities
Specific legal references to intersexuality
The law in Uganda, Kenya, and Rwanda is explicit and similar in regard to sex classification. Either one is born male with a penis – and constructed to live as a boy or female with a vagina and constructed to live as a girl. Since the law doesn’t allow any variations, which nature abundantly allows nonetheless, a child that is born with atypical sex characteristics, i.e. conditions where the child’s genitals, chromosomal or gonadal characteristics are not entirely female or male (Preves, 2003), parents and/or doctors will make a decision on behalf of the child to assign a sex out of the two sex classifications.
This is not just due to the law, which of course is unconditional, but also to the parents who want a normal child. Nonetheless, the literature reviewed proves that genes, hormones and genitals do not necessarily stick together (Dahlen 2006). A child with a penis can for instance have the XX chromosomes, (i.e. the female ones), and a child with a clitoris and/or a vagina can have the XY chromosomes (i.e. the male ones). This can also be the case if the child has ambiguous genitalia where something ambiguous is always compared to something medially and/or socially to be “normal”. Technically speaking, the intersex condition signifies a variation in the reproductive and sexual system. And the real ambiguity lies in how the observers face the situation.
The simplified handbook on international and national laws, laws and policies on children (UNICEF and FIDA – Uganda) informs us that even at the regional level we have the African Charter on the rights and welfare of the African child and Uganda, Kenya, and Rwanda are signatory. This charter commits the country to protect ALL children – intersex children inclusive – against various forms of social, economic, cultural and political abuse and exploitation. As state parties, Uganda, Kenya, and Rwanda are obliged to undertake the necessary steps and adopt legislative and other measures to give effect to the provisions of this charter which spells out basic human rights that all children have.
Every child has the right to: live, survival and development; name, registration, education, leisure , recreation and cultural activities, health and health services, special judicial treatment in a manner consistent with the child’s sense of dignity and worth, parental care etc. the right to life, survival and development (Article 5). The right to be cared for, protected by his or her family and to reside with his or her parents (Article 19).
Protection against child abuse and all forms of torture, inhumane and degrading treatment, including physical or mental injury or abuse, neglect and sexual abuse (Article 16). That said, it is established that Intersex Genital Mutilation of intersex infants and forced mutilations of intersex adults are a form of torture and constitute a human rights violation.
The case of Uganda:
|Law||Provision||Impact on intersex persons|
Constitution of the Republic of Uganda
|Article 20: fundamental rights and freedoms are inherent and not granted by the state||Should include intersex persons rights and freedoms|
|Article 21: The right to equality and freedom from discrimination||Intersex people have a right to equality and freedom from discrimination|
|Article 27: The right to privacy||Intersex people have a right to privacy|
|Article 30: Right to education||Intersex children have a right to education just like any other child|
|Article 32: Affirmative action in favour of the marginalized groups||Intersex people are among the most marginalized groups in Uganda|
of Persons Act
|Change of name of an adult
|Intersex persons should have the
right to change their names. However, cross-sex names can be problematic both socially and legally even with this constitutional right.
|Registration of a child born a “hermaphrodite” (Section 38) and change of sex of such a child.||Intersex children can be registered and their sex changed at the recommendation of a medical practitioner.|
|Registration as either male or female||Note: What of those that can’t really
fit into the female or male boxes? And are no longer children? This makes them stateless.
The case of Kenya:
According to John Chigiti of Gender Minority Trust, in 2014, a Kenyan court ordered the Kenyan government to issue a birth certificate to a five-year-old child born with ambiguous genitalia. In Kenya a birth certificate is necessary for attending school, getting a national identity document, and voting. In the case of Baby “A” (Baby “A” Vs the Attorney General (AG) and others Petition number 266 of 2014) Justice Lenaola brought out the need to have a list of the Statutes that regulate the affairs of the intersex community. He further directed the AG to identify the state organ that is responsible for data collection around the issues of the intersex. We can comfortably now say that Kenya is ready for the intersex.
The Persons Deprived of Liberty Act 2014 is a first in Kenya to define who an intersex person is. Section 2 of the Act defines an intersex as a person certified by a competent medical practitioner to have both male and female reproductive organs. Although this is an extremely shallow definition, it is fair to say that for Kenya, this is a first step in the right direction.
Going by legal documents, children in all the three East African countries under this survey generally have rights and freedoms entitlement under the terms of the Universal Declaration of Human Rights (UDHR 1948); International Covenant on Civil and Political rights (ICCPR 1966); International Covenant on Economic Social and Cultural Rights (ICESCR) and significantly the Convention on the Rights of the child (CRC 1989). Uganda has gone ahead and domesticated these Conventions into the 1995 constitution and other related legal reforms, chapter four of the Uganda constitution article 34 provides for the rights of children, also the children act was enacted to reform and consolidate the law relating to children. While Uganda’s policy framework shows a strong commitment towards providing care, protection and maintenance of children, it forgets and excludes intersex children, it caters for only two categories of children male and female and provides no protection whatsoever for intersex children from fear of assault, abuse, inequality, exclusion and discrimination in the societies where they reside. SIPD works with 1402 intersex children and people in 50 districts of Uganda since 2008, and due to continued advocacy, the Uganda parliament in 2015 included some basic recognition clause of the right to citizenship of intersex children and people in the registration of persons Act of 2015. That said, the language used – of “hermaphrodites” instead of “intersex” in this recognition clause remains stigmatizing and de-humanizing.
In Rwanda, HDI reported that negligible attempts have been made to categorize intersex children among children with disabilities. HDI kept no specific numbers of intersex people they had interacted with reported that they had come in contact with at least twelve (12) intersex adults who had sought refuge in the LGBT camp but had to flee due to discrimination and lack of support.
In Kenya, the law does not explicitly recognize the existence of intersex children or people. However, the Kenyan law courts made a positive ruling in favor of “Baby A”’s right to citizenship through the issuance of a birth certificate in a ground breaking litigation suit by Gender Minority Trust (GMAT) in 2014. This has initiated a process of acknowledgement of the existence of intersex people in Kenya and hopefully will lead to more organized support. Apart from this legal milestone of baby “A”, SIPD was able to speak to six (6) intersex adults, only two (2) of whom were keen on initiating some rights organizing. The other four (4) just wanted to live a quiet and safe life.
CULTURAL, MORAL, SOCIAL AND RELIGIOUS DISCOURSES
The baseline looked at how the social, religious, and cultural fundamentalisms facilitate the discrimination of the intersex people in the different societies of East Africa.
People in the different communities in all the three countries Uganda, Kenya, and Rwanda the researcher interacted with have a view that you are either born a male or a female, and for the case of intersexuality some view it as myth, others a punishment leaving the child born with this condition to suffer in life even to the threat of being killed.
In Uganda if an intersex child is born in urban and rural areas of Uganda, it is considered to be a punishment for an offence the mother committed either in the present life or an earlier life. The child and the mother are expelled from the community, which is essential for survival. Therefore, many mothers kill their newborn baby, hoping that the child’s intersex remains undetected at the funeral at the funeral, since other members of the community rarely touch the dead body during the funeral. And they continue to note that in Uganda we have failed to acknowledge that culture is not static it’s dynamic. This leading to sections of the communities all over the country to reproof intersex children as a population haunted by witch craft and as result basic care needs and health become a problems to these children in case they survive death.
Discourse on the right to housing
Among the rights of the child, there is a right to housing, or shelter. In Kenya, the intersex child will usually be forced out with the mother but in many cases, the child is isolated and hidden in the house but when they reach early teens, they will be forced out of the house and homestead to go and fend for themselves, and warned never to return. One of the intersex young adults we interviewed had this experience, was chased from home and has not returned since.
In Uganda, the scenario is not that different from Kenya. Intersex children are denied this right to adequate standard of housing. In Northern Uganda for example, intersex children are denied housing. They are separated from their siblings and put in remote huts on the peripheral of the homestead, further than where animals are kept. They argue that if this child is left to stay with siblings it’s very easy for this child to pass on the bad luck to other children in the family that are considered “normal”. There is another case in Rakai district where a child was moved from the main house and isolated in a small hut at the advice of the family’s in-laws. This was a measure to control the continuity of what is considered a bad omen in the family.
The mother was quoted saying (translated from Luganda) “I was ordered to take my child from the main house and abandon it in the outside hut because it was a “curse” and they didn’t want the “curse” to spread to other children and people in the main house… they also told me I was the cause of the evil happenings in their family”
Photos1 & 2: Picture of a child who was isolated from the main house and photo 2 shows a typical homestead in Northern Uganda.
A typical homestead will have a main house and other sub houses. When an intersex child is born, they are removed from the main house and put into a small hut distanced from the main homestead to stop the bad omen affecting the entire family.
Discourse on the right to education
Every child is entitled to the right to education, but schools lack support and respect of a student’s unambiguous sex or who lack a proper sex determination/gender identity as per societal norms. SIPD engaged 12 schools in Uganda, 1 school in Western Kenya, and consulted about school perceptions from HDI Rwanda and found out the following: Schools lack toilets, showers and change rooms which are specific to intersex children and youth. Coupled with the lack of appropriate facilities, they also face acute discrimination from their fellow students and teachers, making them extremely vulnerable. It has been very difficult for some intersex children to choose toilets where to go as they don’t seem to fit to either the boys side or the girls side i.e. it will be impossible for a boy who can’t pass urine while standing to go to the girls toilet because girls will feel offended since they perceive him to be a boy yet fellow boys will not understand why he must squat to pass urine if he uses the boys’ toilet. Whichever toilet he chooses to use, he must be in hiding. A situation like this is one of the several stories collected as causes for dropping out of school.
The baseline found out that in Uganda and other East African countries, 90% of the intersex youth interviewed reported that they were forced to drop out of school because of the immense stigma and discrimination associated with the non-binary development of their intersex body. An intersex teenager in Uganda was quoted saying “Mukama bwakuyamba nomalako okusoma nga wazalibwa mweno embeera nga eyange obeera wa mukisa nnyo era Mukama osaana okukimwebaliza”. Meaning that in Uganda if you are in position to conclude school and you were born intersex, you are very lucky and you need to thank God.
The role and impact of religion
Culture, religion and morality are used by sections of communities to reproof intersex people as a population haunted by witchcraft, and whose redemption lies in the same. As a result access to education, health care, legal services and justice becomes a challenge. In all the three East African countries surveyed, religion encouraged various divine interventions and rituals, as well as overarching silence as a solution.
Socio – economic Challenges
Concerning the socio – economic challenges, Gloria from Kampala district narrates that she lives with untold pain. Where she said a black cloud hang over her life when she discovered she was intersex. She said “I lost both parents when I was two years old I was in taken up by my grandmother who lives in Bunyaruguru. When I was in P5, I discovered that urine passed out of a small hole on top of my genitals. However, I found out that I had no virginal opening,“ she says, “I wondered what had gone wrong with me and why grandmother and aunties had not told me about my condition. I became desperate. I wished my parents were alive to explain it to me. One day, one of my aunties told me that I was born with that condition and that my late knew about it, but had nothing to do,” Gloria says. She further narrates that her parents thought she had been bewitched by her stepmother. But when the doctors examined her, they were advised to consider surgery at the age of seven or 10. Unfortunately, they died before she turned seven. “I am now 29 years old, but I have never experienced menstruation and I have never developed breasts. People describe me as a man and others as a hermaphrodite; it hurts me and affects my self- esteem,” she said. According to a medical examination, the doctors confirmed that Gloria had a very small uterus and no virginal opening. She has high levels of testosterone (a male hormone) which is responsible for her condition.
“Maria, from Rakai district narrates “I cried myself to sleep” Her flat chest and male voice keeps one wondering whether Maria, is a man or a woman. Doctors say she has dominating male hormones in her body. What is more, she has ambiguous genital organs. Maria narrates that “I grew up with my grandmother in Kalisizo, Rakai district. While I was young, my grandmother never told me anything about my sex. When I turned 21, I realized I had a growing penis in my private parts.” “When I asked my grandmother about it, she gave me disquieting look. I got distressed and often cried myself to sleep. I kept pestering her for an answer, but in vain. One day, she explained that that’s how I was born. She told me to keep it a secret to avoid being stigmatized.” Maria said every time she wanted to consult her friends about her condition, she refrained as she feared being stigmatized. “It bothered me that I had this condition. I could not menstruate and I developed a male voice. I also had no breasts at all. Eventually, people began calling me names. Others laugh at me saying ancestral spirits cursed me. I feel worthless, as a result,” she lamented. Medical tests proved that Maria should have been a woman, although she has a masculine physique. However, the decision is hers to decide what sex she is. Nonetheless, if treatment is delayed, her condition might be irreversible by the age of 23.
“William, from Jinja district also narrates in “Not a boy and not a girl” by Vique- Ocean Kahunju which goes by “Being born with ambiguous sex characteristics can be quite distressing. People call you names and you struggle to fit in society. Learning about his intersexuality tortured him deeply. The truth is that William, from Eastern Uganda, was a boy in a girl’s body. This upset him as arguments arose about him and some people considered him demonic. “I found out the “abnormality” when I started to menstruate at the age of 15. I nearly fainted, but opted to keep it a secret. I did not know how to explain this to any of my friends or relatives who had always known me as a boy,” says William. “My dilemma began when my parents died while I was a small boy. I was left under the care of a stepmother, who probably did not realize I had a problem,” William adds. He says the fear of being stigmatized kept him tight-lipped about his condition. “I knew my life had hit a bumpy phase and thought I would die. As time went by, matters were not helped as I continued to menstruate. Though physically I looked like a boy, it did not stop me from experiencing every natural process a girl undergoes.”
“I developed breasts. My hips were pronounced and my voice was feminine. But with the biology knowledge I had, I knew it was only girls that menstruate, develop breasts and hips. I could not find justification as to why this was happening to me,” William laments. “Sometimes I desire to be in a relationship, but I am not sure whether I should get a female or male companion. I feel empty when people stare at me and call me names such as “hermaphrodite”. Sometimes I wish I was not born. Doctors also discovered that William has a vaginal opening under his penis instead of male testicles. Medical tests have further proved that he has a birth canal and a uterus. “Having breasts and a vagina under my penis freaked me out. And the worst part is that whoever I ran to for comfort made fun of it. Some fueled gossip about my sex ambiguity. It really worked my nerves. In fact, it forced me to drop out of school,” William narrates.
Sydney from Kenya also narrates “My family isolated me when I was young and I was not taken to school. In Kenya the parents will hide the child – if they are unable to kill it – and when one reaches teenage, they will ask you to leave the homestead and go far away. It is a scary time and one is left destitute. In some ways I think the intersex children in Uganda are now luckier that they have SIPD. My situation was worse and as a result, I have no skill I can use to earn a living.”
In responding to this gap, and as a pilot intervention, SIPD Uganda has trained eight (8) intersex teenagers in hair dressing, construction, and tailoring. In addition, three (3) intersex youth have been spent a week as SIPD interns to learn from the engagement and advocacy model SIPD uses in Uganda.
Healthcare Violations – Genital Mutilations
There are many children in Uganda who have had involuntary surgical procedures and it has been parents and doctors who have spearheaded this. A mother in Mukono district said
“Nze bwenazaala omwana wange, namuzaala nobusajja bwe nga butono nnyo mubutuufu nga tebulabika nakulabika. Kakati waliwo ekitongole ekyali kinyambako okulaba nti omwana wange afuna obujjanjabi obutuufu naye omusawo eyalongoosa omwana wange ngagezaako okutereza obusajja bwe teyambulira buzibu buyinza kukivamu wadde okusooka okungamba ekintu kyoona wabula ye yagenda bugenzi mu maaso nakulongoosa mwana wange era ebintu tebyatambula bulunji nakatono nokutuusa essawa ya leero era mu mutima gwange nejjusa lwaki netantala okutwala omwana ono mu ddwaliro..naye nange napapa okola kino kubanga nali ntaasa maka gange omwami wange aleme kundekawo kuba yali ayagala amaanye oba omwana gweyazaala mulenzi oba muwala ate nga ne nazaala wange nabenganda ze bandi bubi….nalowooza nti singa omwana ono aterera ebyange byali byakuba birunji naye munange byayongera kwononeka kuba ebyava ku dwaliro mukulongoosa tebyali birunji…kale munsabireko banange”.
The above statement means that when this mother gave birth, the child had a very tiny penis that couldn’t be noticed. The husband wanted to know whether she gave birth to a boy or a girl and the in-laws were on her neck. There was an organization that helped her acquire medical help. It’s very unfortunate that the doctor who did the surgery didn’t tell her anything like implications and up today she is regretting why she made such a decision that her child should have a surgical procedure because what she was trying to protect, things just went worse as she was abandoned by the husband and the in-laws basing on all that happened since the surgery wasn’t a success but rather left emotional and physical scars.
Photos 1 and 2 showing two intersex children who were born with penile agenesis and surgeries didn’t go well
The baseline confirmed that indeed only 45% of women in Uganda for example, deliver at the hands of medical healthcare providers and close to 55% women deliver at the hands of the Traditional Birth Attendants (TBAs). Recently there was a plan by government to phase out TBAs and replace them with non-traditional health workers. TBAs don’t have information concerning rights based care and management of babies born intersex but are closer to and more affordable for the people in the communities than medical facilities. The recommendation of SIPD to government is to train and equip them with enough information and tools rather than to ban them. This survey revealed that the Western medical approach to intersex is not dominant in East Africa, which is largely more rural than urban, and that the predominant approach is traditional riddance.
In association with the typical circumstances of giving birth in rural areas, such as communal attention and superstitious traditions, the lives of intersex babies are constantly at great risk of one or other form of discrimination. Uganda, Kenya, and Rwanda all don’t have a statutory health insurance system, and only about 4-5% of the population is covered by a sickness insurance scheme. In the case of a diagnosis of DSD, health insurance companies do not assume the costs for medical measures, because they tend to be vast and prolonged. Some people pay for cosmetic genital surgery, the removal of the gonads or hormone therapy for themselves or for a relative. In rural areas, most of the births take place at home or in a birthing center. A traditional birth attendant and an experienced elder are present for most births. Every birth is traditionally a feast, and is celebrated in the presence of the entire village community. Soon after the birth, every single member of the community welcomes, holds, bathes, and celebrates the child. Hence, it is generally impossible to conceal the newborn’s intersex characteristics if it is noticeable as early as at the time of birth.
Mental Health implications
Lack of medical monitoring and access to appropriate healthcare can imply serious health risks for someone intersex. On the other hand, unnecessary, non-consensual surgery or cultural and social impositions on an infant and the mother leave life- long emotional and physical scars and also unattended health implications of opting for secretive corrective surgeries versus compromised immunity. (in the event of association with an individual’s HIV status)
Interviews with intersex teenagers and young people in Uganda, Kenya, and Rwanda all revealed that there is a lot of stress. The majority of intersex people feel that they have no future, are scared all the time and succumb to substance abuse or criminal and suicidal tendencies.
Mental health challenges were also major among parents of intersex children, mostly mothers. This finding was primarily in Uganda and Kenya. SIPD did not get the opportunity to interview any parent of an intersex child in Rwanda.
GRAPHICAL REPRESENTATION OF COMMON APPROACHES TO INTERSEXUALITY – REPORTS FROM 200 RESPONDENTS FROM UGANDA, KENYA, AND RWANDA.
Major Misconceptions: Intersexuality Vis a Vis homosexuality
In most of East Africa, intersexuality has lately also been confused to be a form of sexual orientation, which is not the case. Intersex is sex determination and during adolescence, may or may not lead to gender identity and/or sexual orientation questions. Gender determination is the self-concept of being either male or female while sexual orientation is the romantic feelings and attractions towards a person of the same gender, different or both. Thus people who are intersex may take any gender identity and sexual orientation (Liao 2007, 399). However, they just have particular questions or worries about their sexuality. Many intersex consider that they are remarkable men or women who happen to have a medical condition which has caused some unusual physical features, which may disturb in their sex determination, and not gender identity or sexual orientation. One intersex person in Masaka district was quoted saying
“Kyangu nnyo omusajja ayagala basajja banne oba omukazi ayagala bakazi banne okuyitawo newataberawo amwogerako kuba kyaali kiba tekimwetimbye mu ffeesi naye nze eyazalibwa ngobutonde bwange tebutukanye, oluba okuyita kubantu ebiseera ebisinga ekiba kiddako kunjogerako ngabebuuza oba ndi mulenzi oba muwala ate tekikoma ku kino awo ebirowoozo byabwe biddukira mangu ku ani oba gwenjagala munsi muno olwo banguwa okakasa nti ndi omu ku abo abagala basajja oba bakazi banabwe kuba nomubiri gwange guba gubalemye okutegeera naye ngate mwana wattu okuzalibwa mu mbeera eno tekitegeeza nti ngenda kwebaka nabasajja oba bakazi banange….kale banange tulabye ennaku”.
The above statement translates thus:
“it’s very easy for a gay or lesbian person to pass and no one will even know that it’s a gay or lesbian that has just passed nor even asking if it’s a boy or a girl, but immediately an intersex person passes, people will start arguing whether it’s a boy or a girl and consequently start to discuss his/her orientation and naming the intersex person all sorts of names. In fact since they fail in most cases to understand our bodies, they will think we are the ones who are the homosexuals.”
The intersex individual also notes that
“It hasn’t been an easy journey living with my beloved wife as many people in the community thought I was a woman. I have been called all sorts of names and at some point I have been referred to as a lesbian. I have always defended myself by telling people that I am not a lesbian but a man who loves women. I am very sure many other intersex people are going through the same just that many of them are not bold enough to speak”.
He tells all this with his smiling face that gives hope to many other intersex teenagers knowing that they aren’t alone.
Intersexuality Vis a Vis Gender/Sex
The notion of gender was introduced to indicate the social sex, i.e. something “socially and historically constructed” as noted by Magnus Danielson (intersexuality and its medical and social implications, 2005) in (Gamzoe, 2003, 23). The reason to introduce this concept was to separate biology from culture and this makes it easy to talk about masculinity and femininity “without the need to deduce this to biological differences” (Ambjornsson, 2004, 31): According to a poststructuralist position “gender and other dimensions of the identity do not exist beyond everyday action” (Ambjornsson, 2004, 32). In other words, there is nothing that predetermines our identities as women and men. “Gender is not a cause but rather an effect of certain actions”
(Ambjornsson, 2003, 32) or more aphoristically put, people do not act as they do due to who they are; people become who they are due to how they act. But for it to be more convincing, it requires continuous recreation. Thus, gender is not a static condition, but rather an infinite repetition of normalized behavioral patterns.
However, in this manner sex remains “a natural, unproblemitized and obvious representation for the biological sex” (Rosenberg in Butler, 2005, 22). Therefore, with the separation of culture and biology, the seemingly non-problematic status of the natural sex is reinforced. This might be one of the reasons why similar reasoning, as that regarding gender, is applied to the concept of sex.
According to Butler (1990) it is impossible to keep sex (biology) and gender (culture) detached. They are constructed in the same manner, i.e. through language and action. Femininity and masculinity are therefore an enforced quoting of a norm whose historicity is permanently united with relations shaped by discipline, regulation and punishment (Butler, 2005). It is with these codes of gender that the body is sexed. And if gender signifies the cultural part of the sexed body, then it follows that one gender simply can’t be attached to one sex in an ambiguous way as for the case of an intersex child.
If we agree to the permanence in binary sex, it isn’t given that the constructions of “men” will exclusively be placed to male bodies and that women exclusively describe female bodies (ibid). Consequently, masculinity and femininity can represent any body and even if sex would have been binary in its morphology, there is no reason to assume the existence of only two genders.
The conclusion from reviewed literature is that no one is by design man or woman.
“Man” and “Woman” are rather constructed. At the very first moment of life, when the midwife makes the sex of the child known, sex is being constructed via performativity. This announcement informs those around the child about how to behave towards it. “We fill up the genitals with meaning and decide that exactly those parts of the body should found the division of people in two groups” (Dahlen, 2006, 38).
In Uganda, Kenya, and Rwanda, interviews with 200 parents/guardians revealed that they worry that the child will not fit in at school and with peers. There is an urge for sexual normalization, generally justified with the noble ambition to preclude intense social stigma that may await a child who is identified and labeled as sexually deviant.
But while classifying others generally enables us to begin formulating social expectations as we engage in social encounters, it is not only confusing but a source of great social dilemma for a person born with ambiguous sex characteristics.
This section examines what has been done in the area of civic education, lobbying and policy advocacy for the rights of intersex children, with special emphasis on the achievements made, and the challenges that need to be addressed in order to improve and increase a better and safer quality of life. This section also looks on the philosophical underlying principles for the protection of intersex of children, which inform organizing in the East African region.
SIPD is at the forefront of intersex organizing in Uganda and it’s the only exclusively intersex organization in Uganda and East Africa at large. Over the past eight years, it has networked around intersex organizing autonomously and in alliance with sexual minority rights organizing, as well as in alliance with children’s rights organizing in other parts of the region. In 2014, SIPD organized the first ever regional intersex meeting where 20 intersex advocates and allies from Rwanda, Burundi, Kenya, Congo, Tanzania, and Uganda convened in Uganda to strategize and plan for the way forward. The key approach to organizing for SIPD is Public Education. This is done through community engagement, alliances building, mentorships, empowerment and learning interventions, policy advocacy, and media engagement. This is done nationally, regionally, and internationally. While these efforts have yielded more openness and visibility, there are a few concerns, which have been affecting intersex organizing in Uganda which included; Intersex being silenced within wider LGBT organizing. For the past decade of LGBT organizing in East Africa, intersex has always been mentioned as part of the targeted sexual minorities but that’s all it is
– a mention and a very insignificant mention at that. Subsequently, the wrap up in the LGBTI acronym has been more of a disadvantage than an advantage in terms of visibility, support, funding, and security.
Interviews with all 30 field based focal persons SIPD is working with reveal that socialization has forced SIPD’s organizing to operate along gender binaries of male and female body politics and gender identity. Intersex people who don’t really conform to female or male identities are ostracized and forced to conform to the two normative and accepted sexes and genders.
This study also revealed that different strategies – though miniscule – are being implemented in the different East African countries – Kenya, and Rwanda and further down in Zimbabwe, South Africa, and Zambia and different organizations are seeking information and allies to augment their advocacy strategies for intersex rights. And there is a promise on the horizon of a vibrant intersex movement in the region. For example, in Kenya, the primary advocacy efforts by both GMAT and the Transgender Education and Advocacy organization have been in the area of ensuring registration of intersex children even with their indeterminate sex identities. No specific advocacy efforts were found in force in Rwanda.
The Registration of intersex children as citizens
Both SIPD Uganda and GMAT Kenya have successfully advocated and continue to advocate for amendments around the legal recognition of intersex children – even without a definite sex assignment – as citizens.
There is, however, a lot of work needed to shift social attitudes to meet with legal progression. In all the three East African countries under this study, there is still a huge sense of statelessness for intersex people. Addressing this need is still high on the radar of priorities for intersex advocates and allies in the region. SIPD called a regional meeting in Kampala to initiate this discussion.
Photographs from the SIPD regional Intersex convening
The regional meeting held in Kampala by SIPD Uganda to initiate a regional organizing agenda for intersex health and rights had five key critical aims; A). Amplifying advocacy voices around health and rights for intersex children and people in East Africa, technical support and facilitating knowledge transfer. B). Having a critical mass of intersex allies and stakeholders who are very confident in addressing issues surrounding the right to health, choice, life and dignity for intersex children and people. C). Documenting and disseminating best practices concerning intersex interventions from a regional focus. And D). Up lifting the support and advocacy networks for intersex health and rights in the East African region.
International advocacy tools specific to the rights of intersex people
The Yogyakarta Principles on the protection of intersex children’s rights
As per the international organizations and our local organizations like SIPD are working to increase protections for children against medical abuse, including unnecessary surgeries performed on intersex infants (www.oiiinternational.com). Unfortunately International Human Rights instruments don’t specifically address the protection of intersex children and people, the only mention of these protections are in 2006 Yogyakarta principles which essentially address gender identity and sexual orientation.
In 2006, a group of international human rights experts developed the Yogyakarta Principles to provide a universal guide for human rights regarding sexual orientation and gender identity (www.yogyakartaprinciples.org). Two relevant articles in this principle include:
“States shall “(t) take all necessary legislative, administration and other measures to ensure that no child’s body is irreversibly altered by medical procedures in an attempt to impose a gender identity without the full, free and informed consent of the child in accordance with the age and maturity of the child and guided by the principle that in all actions concerning children, the best interests of the child shall be a primary consideration.” (Princ. 18(B))
“States shall “(e) stablish child protection mechanisms whereby no child is at risk of, or subjected to, medical abuse.” (Princ. 18 (C))
The Yogyakarta principles come in force to protect infants born with DSD/congenital disorders because infants born visibly with intersex have historically been “treated” with surgery to “normalize their genitalia” (Tamar-Mattis, supra note 4, 60) most often by doctors following the “concealment method,” whereby they assign a gender, modify the genitals accordingly, and conceal the intersex condition from everyone, including the patient (Id.64-67). While this is still a common practice today, some doctors are changing the way they approach intersex infants in response to recommendations from advocacy groups like SIPD (Uganda), TEA in Kenya, Gender Minority Trust in Kenya, Health Development Initiative in Rwanda, other legislative allies, and the coming into force of The Yogyakarta principles(Id.64, 77-78).
CONCLUSION AND RECOMMENDATIONS
A.R. Byaruhanga wrote in A Journal of Makerere University Convocation:
“With regard to the bodily aspect, the human person’s basic needs have to be satisfied. These include food, shelter and protection. In the absence of any of these, social development is clearly unaffirmable. Regarding the spiritual aspect, the human person needs ideas of freedom, justice, honor, truth…….Lack of any of these implies lack of development.”
The baseline on sex development and gender non-conforming identity dilemmas among children in Uganda, Kenya, and Rwanda was made to investigate the lived realities of Intersex people in Uganda, Kenya, and Rwanda. The survey showed that in all the target East African countries of Uganda, Kenya, and Rwanda, intersex children and people continue to be pushed further to the extreme margins – even within the wider LGBT community, which makes some mention of this population. It also showed that intersex children and people are affected by cultural, moral, social and religious fundamentalisms which society uses to reproof the existence of intersex people in East Africa.
John Rawls (1971) John Rawls narrates that justice is not only impartiality but also treating people fairly and in proportion to their needs as well as their merits. There are inequalities of birth in this case of the children born with ambiguous sex characteristics or DSDs (what Rawls calls the ‘natural lottery’), all these create undeserved disadvantages for intersex people. Rawl arges us to change the social system so that it doesn’t permit injustices to occur. According to him, a socially just society is a product of a social contract founded on three major principles which include a) the principle of liberty b) the principle of difference and c) the principle of equality. The principle of equality requires public authorities to implement an atmosphere of equal opportunity where everyone has a reasonable chance of obtaining a decent life, especially and those with fewer native assets should be compensated. Intersex children and people have to be part of this focus and cannot continue to be mistreated and thrown to the extreme margins of society.
In order to protect the intersex children and people, we should make our domesticated laws on children in Uganda, Kenya, and Rwanda more practical and incorporate within them the provisions of children with ambiguous sex characteristics as it was done with children born with disability. The children’s statutes and Acts which were enacted to in all three East countries in this survey.
Stop harmful unnecessary surgeries: Intersex Genital Surgery on intersex infants is unnecessary and a violation of bodily integrity. It causes a myriad of negative outcomes, including:
ˠ Decreased or destroyed sexual sensation, including inability to orgasm
ˠ Chronic pain and scar tissue
ˠ Additional surgery arising from complications due to the first surgery
ˠ Shame and depression from being made to feel that their bodies are inadequate
ˠ Potential discordance with gender identity
ˠ Sterilization – the denial of the fundamental right to reproduction (www. endocrinetoday.com)
Reform and introduce a specific law protecting intersex children and people, enabling access to care, and protection of intersex children and people. The children’s act provides a legal and institutional framework for child care protection. It defines rights, which all children in Uganda have, accords specific rights for children with disabilities to ensure equal opportunities, and obliges the parents or any person in custody over the child to maintain the child ensuring education; guidance , immunization, adequate diet, shelter and medical care. Therefore as this is the case with other children also it should be the case with intersex children across East Africa and not just in Uganda.
Every intersex child has the right to: Stay and live with parents; Education and guidance; Immunization; Adequate diet; Shelter; Medical attention; Assistance and accommodation if in need; Leisure and participate in sports, and positive cultural and artistic activities;
Every intersex child should be protected from: Any form of discrimination, violence, abuse and neglect, and from social or customary practices such as infanticide, and genital mutilations, which are harmful to the child’s health, education, or mental, physical or moral development;
The findings in this study should be referenced in order to create awareness about the human rights and realities of intersex children and people in most of Eastern Africa.
Sex and gender based violence as pertains to intersex people should be continuously documented since most intersex people report human rights abuses such as the non –consensual, irrevocable surgical interventions to which they are subjected,
Include intersex people in health and social development education, service access, and employment policies which must be designed to prevent harassment, abuse, and discrimination.
Government and non-state institutions should work together to support intersex inclusion in health and human rights initiatives. Support intersex inclusion in relevant life supporting programs and promote the advancement of intersex children and people at large.
A central registry should be put in place where such births can be recorded to ease government planning and aiding policy change.
ABOUT SIPD – UGANDA
About SIPD Uganda
SIPD is a grass root, nonprofit human rights organization in Uganda, which through community outreach and engagement, provides reliable and objective information on atypical sex development issues and particularly addresses the need for organized medical, psychological support, public education as well as advocacy for human rights protection of intersex children and people. It was founded by a Ugandan born with an intersex condition backed by other advocates for the rights of children, women and other marginalized populations as a response to the needs of Ugandan children and people with intersex conditions/DSD in Uganda. SIPD provides support for and advocates for the human rights of children and people with DSDs throughout Uganda.
A supportive environment that allows intersex people to make informed and voluntary decisions regarding their gender and sexual identity.
Goal of SIPD
Ending stigma, discrimination, and secrecy surrounding children and people with intersex conditions/DSD by breaking through the current conservative thinking boundaries, which are closed to constructive dialogue on gender and sexuality issues by showcasing the reality and incidence of intersexuality /DSD in Uganda and the East African region.
Work towards a more compassionate, humane, open and tolerant society through innovative communication approaches such as educational and informative awareness drives aimed at challenging the exclusion of populations affected by intersexuality/DSD from social legal, economic and political frameworks.
Work with medical practitioners to increase the availability and clarity of information on DSD and to ensure that this information is appropriately interpreted at the
grassroots level where most of the socially orchestrated marginalization, hostility and ignorance originate.
To create awareness on intersex/DSD conditions and advocate for a more open, tolerant and supportive society towards children and people with intersex conditions and to advocate for protection, welfare and respect for the human rights of all such persons in Uganda.
Populations of concern
Children and people with intersex conditions/DSD and parents of children with DSDs, as well as Gender Variant People.
ˠ Awareness Raising ˠ Public education ˠ Capacity building
ˠ Support (Counseling and information)
ˠ Medical and psychosocial service referrals
ˠ Advocacy and networking
African Commission on Human People’s Rights, Decision of 15 May 2006, Zimbabwe NGO Human Rights Forum v. Zimbabwe, Communication No. 245/2002, para. 169.
A Journal of Makerere University Convocation: A.R. Byaruhanga
The Registration of Persons Act 2015
The constitution of the Republic of Uganda, 1995
Baby “A” Vs the Attorney General (AG) and others
Petition number 266 of 2014)
The Persons Deprived of Liberty Act 2014 of Kenya
SIPD-Uganda, (2015) Human Rights Violations of intersex children and people in Uganda (2015)
Anne Tamar-Mattis, 2006; “Exceptions to the Rule: Curing the Law’s Failure to Protect Intersex Infants”, 21 Berkeley. J. Gender L. & Just.
Anne Tamar-Mattis, Medical Decision Making and the Child with a DSD, ENDOCRINE TODAY (Nov.
10, 2008), available at http://endocrinetoday.com/ view.aspx?rid=32542 (hereinafter ENDOCRINE TODAY)
Alice Dreger & Ellen K. Feder, Bad Vibrations, BIOETHICS FORUM (June 16, 2010), http:// www.thehastingscenter.org/Bioethicsforum/Post. aspx?id=4730&blogid=14.
Arana, M (2005) A human rights investigation into the medical “normalization” of intersex people.
Adkins, R (1990) Where “Sex” Is Born (e): Intersexed Births and the Social Urgency of Heterosexuality. Journal of Medical Humanities, Vol. 20, No. 2. P. 117-133.
Butler, J (1990) Bodies that matter. Taylor & Francis Ltd.
Butler, J (2004) Undoing Gender. Routledge. Consortium on Disorders of Sex Development.
Handbook for Parents. 2006.
Consortium on Disorders of Sex Development. Clinical Guidelines for the management of Disorders of Sex Development in Childhood. 2006.
Danielson, M. 2005: Intersexuality and its medical and social implications, C-uppsats, 10 poang. Malmo Hogskola: HalsaochSamhalle.
Dreger (ed.) (1999) Intersex in the Age of Ethics. University Publishing Groups.
Dreger, A (1998) Hermaphrodites and the Medical
Invention of Sex. Harvard University Press.
Dreger, A (undated) Shifting the Paradigm of
Intersex Treatment. www.isna.org.
Fausto-Sterling, A (2000) How sexually dimorphic are we? Review and synthesis. American Journal of Human Biology 12:151-166.
Fausto-sterling, A (2000) Sexing the Body. Basic Books.
Fausto-Sterling, A (1987) Society writes biology, biology constructs gender. Daedalus Cambridge, 116(1987):4.
Fausto-Sterling, A (1993) The Five Sexes: Why
Male and Female are not Enough. The Sciences, 33:2, pp. 20-24.
Frequently Asked questions: Intersex Conditions, Intersex Soc’y of N. AM., http://www.isna.org/faq/ conditions (last visited January 15, 2014).
How common is Intersex? Supra note 6
Law Students for Reproductive Justice: Intersex rights and reproductive justice 2013.
Mazique, J.R. 1965 “The emergency of African Personality in; The Philosophy of Pan-Africanisms” edited by S.O, Mezu, Washington D.C; Georgetown University Press.
Organization Int’l Des Intersexues, http://oiiinternational.com/ (last visited January 15, 2014).
Tamar_mattis, Supra note 4
The Yogyakarta Principles: Principles on the application of Int’l Human rights law in relation to Sexual Orientation and Gender Identity (Mar. 2007), available at http://www. yogyakartaprinciples.org/principles_en.pdf.
Support Initiative for People with Congenital Disorders,
Ntinda – Bukoto Road Kampala, Uganda
Tel: +256 414 693 861
For the past decade, SIPD Uganda has worked and spoken out about the need to recognize and respect the rights of intersex children and people in Uganda, in the East African region, in Africa, and internationally. These engagements have taken us knocking on the doors of religious leaders, parents, community leaders, educators, policy makers, media, regional opinion makers in the fields of law and medicine, and international development partners, demanding that intersex health and human rights are given due attention and placed on the forefront at the discussion table for the human rights of sexual and gender minorities.
It has been a journey that we – as the team at SIPD – are proud to have taken and feel thrilled to see that this voice and efforts, met with more intersex voices on the continent and around the world to bring about the visibility we celebrate today. The visibility is still nascent but it is present. And while there is still a lot of work ahead of us, we would like to pause and celebrate our work and our journey. We also want to celebrate the journeys of all the beautiful and brave intersex people whose stories and voices continue to positively influence and change the way intersex children and people are treated in Uganda, in the region, and around the world.
We especially celebrate recognition within international human rights structures at the United Nations and at the African Commission for Human and Peoples’ Rights on marking the 2016 Intersex Awareness Day, SIPD Uganda continues to call on the Ugandan government to
A PUBLICATION OF SUPPORT INITIATIVE FOR PEOPLE WITH CONGENITAL DISORDERS (SIPD –UGANDA)
Table of Contents
List of acronyms………………………………………………………………………………………………..4
Analysis: Human Rights Violations in Uganda of children and people with DSDs………..8
a) Surgery without consent……………………………………………………………………………………………………….8
b) Violation of the rights to non discrimination at school……………………………………………………………9
c) Violation of a child’s rights to a family (Abandonment)………………………………………………………….10
d) Violation of the right to health (Prejudice and stigma when seeking health services…………………11
e) Family and community discrimination……………………………………………………………………………………11
f) Lack of legal protection………………………………………………………………………………………………………12
1. To government through the Ministry of Health (MoH)……………………………………………………………..13
2. To parents……………………………………………………………………………………………………………………………15
3. To Religious Leaders…………………………………………………………………………………………………………….15
4. To Uganda Parliament………………………………………………………………………………………………………….15
5. To the Ministry of Education and Sports (MoES)…………………………………………………………………….15
6. To the Uganda Human Rights Commission (UHRC) and other Civil Society Organisations (CSOs).15
Medically referred to as Disorders of Sex Development, “Intersex” is a general term for being physically or physiologically “between male and female”. Intersex people are born with a sex differentiation that makes the anatomy of their bodies atypical and their sex classification indeterminate. For many, it’s at the chromosomal level, others at the hormonal level and for the most obvious ones it’s at the genital level.
LIST OF ACRONYMS
SIPD: Support Initiative for People with Congenital Disorders
HRAPF: Human Rights Awareness and Promotion Forum
UHRC: Uganda Human Rights Commission
CSOs: Civil Society organisations
MoH: Ministry of Health
ICESCR: International Covenant on Economic, Social and Cultural Rights
DSD: Differences of Sex Development
SIPD would like to acknowledge the role of the following organisations in the development of this report.
Members of the Consortium on monitoring violations, for the support provided in guiding SIPD to document the violations of Intersex persons and also editing this report. These are: Human Rights Awareness and Promotion Forum (HRAPF) and Rainbaw Health Foundation (RHF).
Benetech, for the technical and financial support in the publication of this report.
The impulsion behind the Uganda report of violations of children and people born with Differences or Disorders of Sex Development (DSDs) is to demonstrate that children and people born with DSDs are greatly affected and discriminated in Uganda compared to other groups and to show the different gaps within the service prerequisite for this particular constituency. This report will be used to educate the general public, religious leaders, Members of Parliament, Ministry of Health (MoH) officials, and the medical fraternity in Uganda, Civil Society, Ministry of Education and Sports (MOES), the international Community as well as informing policies and policy makers on the best ways and practices on how to come up with tools and guidelines that can help integrate children and people born with DSDs in all the development policies and programs of their country.
More so, this report will illustrate cases of lived realities of intersex children and people in Uganda as there have been sections of communities in recent years who have tried to reproof intersex people as a population haunted by witchcraft and whose redemption lies in the same and they have succeeded in doing this using culture, religion and morality. It should be noted that Intersex people perhaps more than any other groups in society are more prone to manipulations, blackmail, and criminal tendencies, – whether these are directed towards the self (suicide) or at others (as a way of retaliating against society). All of these result in major mental health and sexual violence issues. In fact, the violation of intersex people’s rights has led to spiritual, emotional shame and embarrassment.
Intersex or what is medically referred to as Disorders of Sex Development is a general term for being physically or physiologically “between male and female”. It should be clearly noted that, intersex people are born with a sex differentiation which makes the anatomy of their bodies atypical and their sexual identity indistinct. For many it’s at the chromosomal level, others at the hormonal level and for the most obvious ones is at the genital level. With children born this way, it is usually difficult for delivery personnel – whether midwives, doctors, or traditional birth attendants to determine just by looking at the child whether it is a male or female child.
Most intersex children and people are assigned a female sex at birth and raised to identify as women. However, female biological milestones, such as menses, breast development, and body phenotypically development do not conform to the assigned sex. Instead, androgen – driven milestones – which should occur in males start to manifest, such a beard growth, voice deepening, and body hair growth. These developments are not only a source of immense inner trauma but also a huge attraction for external ridicule and stigma. These often lead to suicidal tendencies, school drop-out, and criminal tendencies.
Inopportunely in Uganda, when an intersex child is born, the family treats the birth as a secret and will isolate the child from the general public. In most cases the mother of such a child will be frowned upon and usually superstitions loom large as 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. 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 conclusive and required tests to warrant such surgeries and without proper surgical or psycho-social support facilities. To make the matters worse, in some cultures children with DSDs are never allowed to grow up to be adults. Most mothers of children with DSDs abandon them for dead in pit latrines and deadly forest areas and run away from their homes for fear of possible prejudices from family and in-laws. In fact, intersex may be as common as cystic fibrosis but it is less much spoken about perhaps because sex and gender tend to be considered such fundamental parts of our identity that people are sometimes reluctant to discuss cases where sex is unclear.
While this is totally a genetic and sexual and reproductive health condition, it is not treated as such by both medical personnel and society. It is rather treated a shame and a taboo. As a result, the occurrences of such births and clinical encounters have not yet been recognised by the Ministry of Health because these reports are never documented or communicated from the medical and delivery facilities. There is consequently no intervention policy targeting this population. The violations of the rights of intersex people in Uganda are within almost all walks of life starting from home, schools, health centers and the most worrying scenario is that even the law in Uganda discriminates against them as exemplified by the Registration of Births and Deaths Act, which under Cap 309 has a provision that restricts people above 21 years of age to change the sex details in the Births Register.
This report seeks to bring to the attention of the Ministry of Health the realities of sex development irregularities and the huge inequities that exist in service provision and information availability to individuals concerned, parents of such children, healthcare practitioners, institutions of learning, and the general public. It generally recommends that the Ministry of Health and the Ministry of Gender, Labour, and Social Development should ensure that there is a Gender harmonisation policy, for the inclusion of children and people with intersex conditions (Disorders of Sex Development) in the national healthcare implementation plan. Such a policy will mean that healthcare practitioners at all levels will work with intersex children and people in an intentional and mutually supportive way that challenges sex and gender norms, catalyses the achievement of gender equality, and improves health.
In Uganda enormous resources from government and international partners have been and are still being put to so many health programs like Malaria and HIV prevention and treatment etc. However, gender is still a key social determinant of inequalities in accessing some of these programs due to lack of appropriate health care, information, and referral services for intersex children and people. For instance by the production of this report, in Uganda there is nothing like a laboratory that makes chromosomal tests for children and people who may need this determinant.
Since sexuality and sexual and reproductive health is a central aspect of being human throughout life – encompassing sex development in utero, sex determination at birth, gender identities and roles, secondary sex characteristics, intimacy and reproduction – intersexuality needs to be addressed as a critical sexual and reproductive health and rights issue by developing a policy framework that enables research, planning, and programming for this population and this will help to curb down many of the violations facing this population since human dignity for children and people with DSDs in Uganda has not been considered at all.
The research team employed a qualitative approach to collect, analyse and document information for the report. The different qualitative methods of data collection used are discussed as follows:
Data used to formulate this report has been collected through the different outreaches done by SIPD. Data was obtained through both primary and secondary sources. The most common sources used to collect data for this report were: media review and personal interviews with intersex youth, intersex adults, service providers, parents, guardians, and civic and religious leaders in 25 districts where SIPD already does outreach and has field based point persons. Some of the data used in the report had been collected over a long period through interactions between SIPD and intersex persons that we serve.
Findings and analysis: Human Rights Violations in Uganda of children and people with DSDs
a) Surgery without consent
In the case of some intersex people, surgical interventions gone wrong have had cascading consequences that have led to rights violations, including interference with the children’s social life.
Some of these surgeries are done without proper or any consent, as usually the parents are driven by fear and they leave the decision in the hands of the medical doctors.
We recorded 22 cases of surgery without consent. An example is the case of a child born in Tororo with a penile agenesis, (born without a penis), this child had a non-consensual surgical operation where the mother was so frightened by the child’s case. The mother was always threatened by the husband as he could always blame her for giving birth to such a child. Finally the husband left the family and the mother was left with the responsibility of looking after her children and this was worsened by the triple role burden of women. In a bid to look for the family support, the mother took the child to hospital for a surgical operation. The operation was not a success as doctors tried to create a penis for the little boy and after three months the penis fell off yet a lot of money had been spent on this little boy. The current situation for this boy is worrying as he is now oozing pus and his life is in peril. The conditions under which the consent for the surgery was given were not conducive for her to make an informed decision.
In this case therefore, the child’s right of making an informed decision is totally denied since many of these discussions are held when the child is still young and can’t be part and parcel of the decision making processes. While Ugandan law has a procedure for parents consenting for children, and it is usually okay for them to do so, it is critical to ensure that parents are in an objective and informed state of mind at the time. As a result of our findings, SIPD encourages non- surgical alternatives to addressing intersex conditions among infants.
It should be noted that there are many cases of medical mal-practice towards intersex children in Uganda, which remain undocumented and this is just because many parents hardly understand that early unnecessary surgeries constitute a violation of a child’s right since it denies them to be part and parcel of a decision that determines their gender. We found out that this violation is driven by the enormous pressure from mostly family in-laws who need a concrete answer of whether the new born is male or female for celebrations to start. They mind less of the emotional and physical irreversible scars that are left on the child.
Photograph showing a photo of a child who had unconsensual surgery/ operation
Source: Field data
In Uganda SIPD advocates for the “Best Guess Non-Surgical Strategy” as contrasted to the “Best Guess surgical strategy’ because the non-surgical option gives room to the intersex child to be part and to participate actively in all or most of the decisions regarding his/her body. This option is also accompanied by counseling and education for both the parents and the intersex person in order to better comprehend the social, cultural and legal issues related to intersexuality/disorders of sex development in Uganda.
b) Violation of the right to non-discrimination at school
Many children in Uganda have dropped out of schools due the mounting sense of shame and the increasing discrimination in schools as far as their sex is concerned.
SIPD has reports of 34 intersex school drop outs as a result of discrimination and stigma. Different intersex children experience different sexual development milestones as they grow up which don’t correspond with the gender that they identify with. Therefore, due to the intense pressure in schools, these children find it hard staying in school.
For example a child in Kabale who had ovaries, a uterus and also experienced menses was raised as a girl for the first ten years of life; but as his body took on male gender attributes with the onset of adolescence he was abandoned by his family. In a bid to live in this hostile environment, he built himself a grass x ` t h a t c h e d house to live in and was able to pay for his upkeep and his school fees, but when menses begun, this child had to drop out of school as he was always bullied by fellow students as they had never seen a boy menstruating.
Source: Field data 2014
The teenager in the photograph above has faced discrimination at school and he has kept on changing schools due to the overwhelming questions regarding his identity by fellow students. In his own words, “I think I am not human, many times I feel like killing myself. I always ask myself why I was born like this. Many people have tried to explain to me why this could have happened but still I am mystified. I think I should die and get rid of these questions that keep on coming to my mind. “
c) Violation to a child’s right to family (Abandonment)
Intersex conditions are a health problem, which has a major impact on humanity and their wellbeing but has been given very little sensitisation. According to our reference doctors in Mulago National Referral Hospital) at least three children are born with a disorder of sex development condition every week. It should also be noted that these are the noticeable conditions but what of those that are born with these conditions that can not be seen shortly after birth? There are those ones whose conditions can be seen later in life i.e. sex development milestones may occur and they compromise the gender that was assigned at birth. However, the shame and failure to find the right answers to the many questions parents ask after getting such a child has cost lives of many children.
We received 51 cases of abandonment. Some of these reports came from orphanages that are part of the Children at Risk Action Network, others from media review, and others from direct contact by traditional birth attendants, hospital staff, and community members. An example is a child born with a DSD condition known as Androgen Insensitivity Syndrome (AIS) in Kampala 1997 was abandoned by the father as he argued that this was a bad omen that was supposed to be away from the rest of the family. He also sent away the mother such that the evil spirit can follow them and live the family alone. This child because of her condition was raised as a girl but at 17 she felt was not a girl. Biologically, she had a male sex chromosome pattern and she always felt like a boy. She had surgery at one hospital in Kampala and by the time this report has been compiled he is living happily as a boy.
There are 42 reported cases of children who were killed in cleansing rituals owing to their intersex condition – because they were believed to be a curse. We also found out that the standard treatment of intersex infants is killing them shortly after birth. Families are breaking apart. We dealt with couples where the husband is not willing to accept the responsibility to father and intersex child.
Photograph below showing a child who was abandoned by the mother in a hospital
Source: Field data
It is critical that the MoH continues working with civil society organizations to come up with clear guidelines on how children and people with DSDs should be treated.
d) Violation of the right to health (Prejudice and stigma when seeking health services)
International Human Rights Law affirms the right of everyone to the enjoyment of the highest attainable standard of physical and mental health and proscribes discrimination in access to health care on the grounds of sexual orientation and gender identity.
However, intersexphobic practices and attitudes on the part of health-care providers deter intersex persons in Uganda from seeking services out of concerns around breaches of confidentiality, stigma, and potentially violent reprisals. In fact to avoid possible prejudices from sections of communities, parents of intersex children have adopted a “Best Guess Surgical Strategy” in treating their children and this has left both physical and emotional scars. SIPD recorded 48 such cases. For example a child born in Masaka was cut badly during a surgical procedure to make his external genitalia “match” his presumed gender. The child’s family abandoned him claiming he is too expensive and that they cannot provide him with housing and food. Staff members at the hospital where the boy has been have said it in public that they are tired of this boy because of his endless problems.
e) Family and community discrimination
Many families in Uganda for children and people with differences of sex development have tried to extend enormous support towards this population but they have also taken it upon themselves to determine sex of their children and thus therefore enforced gender norms and punished indiscretions. As a result many children with disorders of sex development find themselves excluded from family homes and this has accelerated intersex-phobia in Uganda where many of these violations have been caused by the immediate family members. In fact, instead of extending support to these families they end up ill advising the parents thus misleading them into harsh decisions to their children who have at times even killed them.
For many intersex persons in Uganda, social exclusion begins at birth, as exemplified by the story of a child who was born with ambiguous genitalia in Rakai district which is amongst the 50 districts where SIPD has put emphasis. The child’s mother was forced to leave the family home because family members thought the child was an omen and would bring bad luck to the family. Before telling the mother to take her child and leave, some relatives physically attacked her for giving birth to an intersex child. Having been forced from her home, the mother now has no land to grow food and has no financial means to afford food.
Photograph of an intersex child who has been greatly discriminated by family and community
Source: Field data
The above child has been greatly discriminated due to his/her confusing sex determination as she was raised as a girl but after several tests by medical doctors, she is said to be a boy. Intense discrimination emanated from here and some people in the community are seeing her as abnormal.
f ) Lack of legal protection
The Ugandan constitution under the Registration of births and change of name/ sex vis a – vis people with DSDs
The Births and Deaths Registration Act Cap 309 provides the framework for registration of births and deaths as well as change of names and sex. Births are supposed to be registered within three months of the date of birth of a live child. This condition provision requires all children to be registered and therefore, it doesn’t leave out anyone including those children with DSDs.
It is also important to note that under this law, if a child after being registered either through an operation or otherwise, changes from a female to male or from a male to a female and the change is certified by a medical doctor, the Registrar of the Births and Deaths registration district in which the birth is registered shall, with the approval of the registrar general and on the application of the parent or guardian of that child alters the particulars of the child which appear on the birth register. This provision only applies to children and therefore it is also important to children who are intersex and whose sex was difficult to determine at birth.
For change of name, the parents or guardian of any child under the age of 21 years may apply in the prescribed form to the Registrar of the Births and Deaths Registration district in which the birth of a child is registered to change the name of the child. We totally agree that this is a very important avenue for children with DSDs conditions/intersex to have their names legally changed when their sex changes.
The concern here is that this law does not give room to someone who is above twenty-one years of age to change their sex and this is a threat to many intersex people in Uganda. What will happen in case someone has been diagnosed with an intersex condition that needs sex- reassignment but this person is above twenty-one years of age? Policy advocacy is very much needed here such that these laws can be changed in order to favour all children and people in Uganda.
Conclusively, many children and people in Uganda particularly children are still being hidden by their parents with fear of being scorned by the community. In some cases children under go repeated surgeries/ operations and others are taking hormonal treatments without even knowing why this is happening to their lives. This continuous secrecy surrounding intersex means that some people look at this as shameful. They may therefore find it difficult or impossible to talk to others about their condition and as a result may be fearful of forming intimate personal relationships. There is also fear of the way other people would respond if they knew about their intersex condition reason being intersex has been frequently confused with homosexuality in the public imagination.
Unless people with DSDs come out to talk about their lived realities and fight for their rights, violations of their rights and fundamental concerns in all spheres of life will not stop as religion, culture and moral fundamentalisms have been used by sections of societies to reproof intersex people and their existence.
Different stakeholders have different roles to play in the struggle to make sure those children and people in Uganda with DSDs are treated equally and that their rights are upheld. With Uganda’s population now estimated at 35 million people, the government has to make sure that service delivery all in all sectors and for all people is improved for sustainable development of our country.
To the Ministry of Health (MoH)
The government through the Ministry of Health (MoH) needs to do the following:
a) Set up a central registry where these children can be registered once born to ease healthcare, social and legal support later on in their This should include a policy to enable a gender neutral marker on their birth certificates, to ease change of sex, if necessary, when the child is old enough to be an active participant in this decision.
b) This policy should apply whether children are born in hospitals or at the hands of traditional birth attendants. (Respect for the views of the child (Article 12 of the UN convention on the rights of the child: – “When adults are making decisions that affect children, children have the right to say what they think should happen and have their opinions taken into account”)
c) Avail appropriate free health services – such as counseling services, accessibility of cytogenetic tests – particularly hormone and chromosomal tests – and endocrinology services for children and people who may need life-long hormone replacement treatment – should be accessible to all intersex children and people regardless of their gender identities or non-conformity. This will prevent random and best guess surgeries, which have resulted in irreversible and traumatic mutilations of children’s genitals. (UN Convention on the rights of the child, articles 2,
d) The Convention of the Rights of the Child as the first instrument to incorporate the complete range of international human rights including civil, cultural, economic, political and social rights and all aspects of humanitarian law. The convention on the rights of the child sets out the rights that must be realized for children to develop their full potential, free from hunger and want, neglect and abuse. The convention offers a vision of the child as an individual and as a member of family and community with rights and responsibilities appropriate to his/her age and stage of development. It should also be noted that the Convention applies to all children, whatever their race, religion or abilities; whatever they think or say, whatever type of family they come from. It doesn’t matter where children live, what language they speak, what their parents do, whether they are boys or girls, what their culture is, whether they have a disability r whether they are rich or poor. Therefore, no child should be treated unfairly on any basis.
e) Improve the policy on antenatal clinic information Parents are currently prepared for the possible birth of an HIV positive child and how to avoid this or to lessen the chances of such a birth through information and tests after birth to determine the status of a child. The MOH should work hand in hand with other actors, such as SIPD Uganda and others to develop information packs on the sex development and determination of a child born physiologically between male and female. (UN Convention on the rights of the child, articles 3, 16, 17)
f) Incorporate training on sex development disorders manifested either at birth or at puberty in the
medical schools curricula. Children and adolescents born with these variations have been forced to drop out of school because of the immense stigma and discrimination caused by lack of a policy that protects the rights and mental health of such children in school. The ministry can collaborate with other countries to bring in experts to train Ugandan surgeons and other medical workers to appropriately handle cases from a rights-based approach (UN Convention on the Rights of the Child, articles 19 and 23).
g) Strengthen the clinical evaluation system where all children are examined clearly after birth to detect any form of ambiguity of the children’s genitals. For signs that manifest during puberty and adulthood, equip all health workers with knowledge and know-how to appropriately handle cases from a human and health rights based approach. This policy needs to include capacity building programming for traditional birth attendants – who can easily be identified by Village Health Teams (VHTs). This is critical because over 50% of women in Uganda continue to give birth at the hands of Traditional Birth Attendants (TBAs) despite government’s efforts to erase them out of the system.
To parents and caretakers of intersex persons
Parents should always thank God for what He has given them and that the birth of an intersex child should be equally celebrated.
To religious leaders
a) Religious leaders should start spreading a gospel that isn’t based on discrimination and to inform their masses that God loves us (human beings) same way
b) Use the different committees in parliament like Maternal and child health technical committee, its committee on human rights such that they can engage with advocates of children and people with DSDs to discuss the way forward and well-being of all these children and people.
To Uganda Parliament
Amend the Ugandan constitution to favour all people including those with DSDs
To the Ministry of Education and Sports (MoES)
a) Create environment in all schools (both private and public) in Uganda that can allow children and people with DSDs stay and finish school like any other person
b) Change the school curriculum to include issues to do with DSDs and to add this to the wider SRHR groups at schools
To the Uganda Human Rights Commission (UHRC) and other Civil Society Organisations (CSOs)
The Uganda Human Rights Commission should work together with SIPD and other stakeholders to make sure that the rights of all people born with DSDs in Uganda are upheld and lifted since even the UHRC is constitutionally mandated to promote and protect human rights in the country. The UHRC should study well the policy concept note that was submitted to it by SIPD to see areas of intervention for further discussions. This can be done through reaching out to SIPD and all other stakeholders who refer cases to us/work with us.
SUPPORT INITIATIVE FOR PEOPLE WITH CONGENITAL DISORDERS
Advocating the support and advancing the rights of intersex children and people in Uganda.
Location and address for SIPD – UGANDA Naluvule – Wakiso
P.O Box 26608, Kampala – Uganda. Telephone: +256 414 – 274 782
CORSU – Comprehensive Rehabilitation Services of Uganda
HRAPF – Human Rights and Promotion Forum
RLP – Refugee Law Project
SIPD – Support Initiative for People with Congenital Disorders
GBV – Gender Based Violence
IPPF – International Planned Parenthood Federation
SRH – Sexual and Reproductive Health UHSPA – Uganda Science Press Association TBAs – Traditional Birth Attendants
MOH – Ministry of Health
ACME – African Centre for Media Excellence
ABUBEF – Burundi Association for Reproductive Health GMAT – Gender Minority Advocacy Trust – Kenya MARPS – Most At Risk Populations
CFCS – Changing Faces Changing Spaces
UPA – Uganda Pediatric Association
PSG – Parent Support Group
RHU – Reproductive Health Uganda
ICASA – International Conference on AIDS and STIs in Africa
SOV – School Outreach Visit
This final narrative report contains activities implemented in 2014. The funded projects included documentation for purposes of producing a documentary that would in turn be used for further policy advocacy, capacity building and outreach to create safe spaces in schools and communities for intersex young people.
As indicated in our interim narrative report, much of the first phase of funding for this project cycle went to outreach visits to schools and communities to provide support and to collect information and stories. This was also done in a bid to meet our target of establishing safe spaces in at least one school or higher institution of learning a month within the twelve months of the project cycle. The last month of the project cycle included evaluation of work done, compilation of reports from all project activities and planning for sustaining the achievements made as well as deliberating on solutions for the challenges the team has encountered.
As a result of this support, we have been able to implement the following planned activities – schools outreach, media engagement, and maintain a strong institutional presence in all 25 target districts. Other activities we have been able to conduct with other support include parents support groups, policy advocacy, alliances building, and documentation. Our main focus and goal through all these activities continues to be public education.
A key challenge – as mentioned in our interim report – remains the critical need for improvement in actual service delivery in terms of access to medical care, psychosocial support for young people in schools and those who have been forced to drop out of school because they are intersex. By the beginning of quarter 4 of 2014, we had developed a plan to meet this need and bridge the gap through an apprenticeship skills development program, which will initially focus on practical, marketable, and entrepreneurial skills of brick laying and building, tailoring, carpentry, basic mechanics, welding, and micro-business management.
New Intersex cases 2014
In 2014, SIPD registered 168 new cases from different districts of Uganda. Some of the clients have been registered but SIPD does not currently have specific outreaches in the districts they come from and so cannot refer them to a support group or supportive point person. However, they still receive counseling, and medical referral services according to the needs they present to us. 80% of all the new cases remain children under 18 years.
Strategic and Performance Assessment
SIPD has carried out an assessment meeting together with parents and focal point persons from the different communities to ascertain whether we all still have the same understanding of vision and goal as to why the
organization was formed and whether SIPD is still playing an important role in shifting the paradigm around sexual health and rights for intersex children and people in the country.
A photo showing participants in the assessment meeting
The assessment meeting was so helpful since it enabled SIPD staff, parents and focal point person representatives to re-visit the mission, vision and goal of why SIPD was formed and this helped a lot in keeping all concerned parties on track in the human rights struggle of uplifting the plight and rights of intersex children and people in Uganda. It also revealed that SIPD has a critically important role at this particular time in the country and region to influence the social and political conversations around sexuality, sexual and reproductive health, and gender.
Schools Outreach Visits (SOVs)
New Clients registered with SIPD from schools
There has been no platform for discussion on sex development disorders in schools and this has made many intersex youth to continually be discriminated against, stigmatized, bullied and to finally drop out of schools because of these birth differences. SIPD started a schools outreach programme where teachers, non-teaching staff, and students are equipped with knowledge on Disorders of Sex Development (DSDs)/ Intersex. This aims to augment our efforts of engaging the Ministry of Education and sports and look into policies and programmes in schools that can help intersex children and people stay in school like any other children.
SIPD has to date made initial visits to 11 schools and has mainly engaged with school administration personnel in order to gain trust and plan with them on the best way these student safe spaces can work. These include Kiyeya high school, Sanje Senior Secondary School, Bulanga Parents School, Nwoya High School, Namutumba Senior Secondary School, and Butalejja Secondary, Ntenjeru Parents School, Kyambogo University, and Makerere University among others. Out of these, we have received 60 cases known to school administration of students with sex development irregularities that they did not know how to deal with and only 19 of these have remained in school. Teachers and non- teaching staff indicated that they had lost track of the other students because due to the stigma from fellow students and particularly non-teaching staff, the students did not return to school.
Photographs showing some of the schools outreach activities
Our outreach campaign has been greatly supported by the field based point persons. Additional information and knowledge sharing has always been the target of the projects officer. A total of 110 educators in 11 different schools have been engaged
and given more and current information about intersexuality. We continue to receive informal evaluation monthly reports from field point persons and maintain constant telephone contact.
Institutional Capacity support
SIPD has been able to operate successfully with physical offices and been able to pay its committed team of staff as well as meet key operational costs such as transport to communities to trace cases, and network with local allies, maintain the client tracing functions of community based point persons, and engage media. Having moved into safer office premises, we have had the capacity to implement besides schools outreach the following activities:
a) Media campaign and public responses
Our media campaigns have been ongoing though out the year to ensure that we maintain public interest and dialogue. Several of our adult clients have received local support to access healthcare by listeners. For example an intersex person from Rakai district received support to go for surgery and another mother with a child from Mukono got
404,000= which she wanted to take the child for proper medical assessment. Another parent has had both her
intersex child and another disabled child find a benefactor to cater for their medical expenses and school needs. Another listener to our media program funded the surgery for undescended testes for one of our clients in Kiwatule. Another partner provided transport facilitation for four impoverished clients in Rakai to be able to visit a proper healthcare facility and dialogue with a doctor on life threatening conditions they were facing as a result of improper mutilations of their genitals. We continue to receive concerns from callers into our media programs about a key
human rights violation of denying intersex children and adolescents to attend school. Media houses engaged include The New Vision, The Daily Monitor, The Observer and Bukedde. Television and radio appearances have included Radio Pearl, Metro, Ddembe FM, Mama FM, WBS, NBS, and NTV.
A cross section of photos during the follow up outreach activities 2014
b) Parents Outreach and follow up activities
We conducted initial visits to 24 new districts and follow up activities to different intersex families in all old districts. The visits are intended for direct support to intersex families and also making sure that children are not subjected to harmful cultural practices in a bid to “normalize” what society thinks is not normal. Hope has been restored to the different families and they felt that someone is part and parcel of the journey that they are walking.
c) Client tracing
The fact remains that there are still many intersex people in Uganda and parents who lack information. Most of them still think its witchcraft and other related superstitions. SIPD has been receiving calls all over Uganda and outside Uganda with reports of intersex cases that require response with either information or referral. For cases in Uganda, SIPD has continued to reach out and provide information and support by either a physical visit or a phone call. For cases outside Uganda, SIPD continues to work with our regional alliances – particularly in the East African region, mainly in Kenya, Ethiopia, Tanzania, Burundi and Rwanda.
d) Psycho-social support
Counseling is proving to be among the most important aspects of our work. The need for this service has been expressed by the different parents over the past three years as trauma has become very hard for them and the intersex individuals to deal with. Medical care in itself does not fully take care of all the social and political implications of being different, and most of our clients require psychosocial support prior to and after medical attention, particularly where sex re-assignment is a possibility. In 2015, we plan to have two fulltime counsellors; one of them will cater for increasing demand among students and the other will serve parents and carers.
e) Regional Alliances building
SIPD has organized two regional meetings – one was a regional consultative meeting that had 22 different representatives from the 5 East African Countries. The meeting discussed how best to form strong advocacy and networking relationship amongst the 5 East African countries with the aim of making the Intersex movement grow and also to increase visibility in other East African countries. Different views were given by participants from the different countries and also member organizations in Uganda had representatives that specifically contributed and discussed issues around intersexuality.
In May 2014, SIPD held the first ever regional parents’ meeting in partnership with Transitioning Africa, to brainstorm on how effectively to use the advantage of mothers in decision making positions, such as the speaker of parliament and the first lady. The meeting, which brought together 12 parents of intersex children from Uganda, Kenya, Rwanda, and
Tanzania was a huge success.
Participants decided that their submission should initially be done diplomatically and thereafter engagement can start. A couple of ideas were brought up which included but not limited to; recognition of intersex people in different areas, a collective and practical engagement by all parents present – starting to speak politically about this issue in their work places, families, places of worship, village or council meetings, or other spaces in their countries.
Parents agreed and put their signatures on a petition that has now been submitted to the different committees in parliament that are responsible for Maternal and child health care, to the speaker of parliament, and to the first lady. We hope that this will amplify
our advocacy engagements with the Ministry of Health (MoH).
Parents also showed their enthusiasm and willingness to engage if they are called for different engagements and discussions by members of parliament or to meet with the speaker of parliament.
Some of the key recommendations by parents in the meeting included;
Continued collective and practical engagement with all the different stakeholders in effecting change.
An increase on the TV and radio appearances (More media interviews and sensitizations)
More sensitization and training of Doctors (including more posters placed in hospital notice boards and reception/waiting areas). These posters to be shared with parents from the region so they can put them up in their own spaces. Request if there can be some posters in Swahili to ensure they speak to the region at large.
The need to challenge some laws that affect our constituency – thus the urgency of utilizing the woman speaker of Parliament continuously – through writing to her and keeping the issue “in her face” constantly. Successes in Uganda will set a good precedent for engagement in other East African countries.
Call for adequate facilities and machines that do appropriate tests of intersex clients.
More sensitization needs to be done especially in villages.
A submission to the Ugandan parliament was drafted, deliberated on and endorsed. The submission has been made to the speaker of Uganda’s parliament, Hon. Rebecca Kadaga, through two relevant parliamentary committees, namely Committee on Gender, Labour and Social Development and Committee on Social Services. The Committee on Legal and Parliamentary Affairs and the office of the first lady has also received a copy.
f) National alliances building
SIPD has maintained a strong partnership with service provider allies such as different hospitals and health centers and these included CORSU hospital, Rugarama Hospital in Kabale, Arua National referral hospital, Soroti Health centre II, Kalisizo referral hospital, Mulago, Ntungamo health centre IV among others. Other national alliances include the Ministry of Health (MoH), Uganda Pediatric Association (UPA), CSOs such as Straight talk Uganda, Raising voices, Centre for domestic violence prevention, HRAPF, RLP, and Uganda Health Science and Press Association (UHSPA), Reproductive Health Uganda (RHU), Uganda Counselling Association, and Uganda Pediatric Association. Several activities have been done in conjunction with different partners like the awareness project that was organized by the RLP and SIPD was part of these activities and SIPD in conjunction with HRAPF organized a meeting with Intersex people and parents for feedback to be submitted to the Equal Opportunities Commission (EOC) , a dialogue at the CSO fair to discuss the role of the ordinary citizen in protecting minority populations.
HRAPF has helped SIPD in different legal aspects that it needed i.e. A case in Rakai where an intersex family was being chased out of the land, SIPD referred this case to HRAPF and the intersex family managed to access justice. Those who wanted to chase away the family urged that this family was bringing bad omen to the entire family because of the intersex birth that occurred.
Another case was in Mukono where a father was denying support to his child because he was born intersex and the case was referred to HRAPF, who came in, looked for a father together with SIPD and after the different engagements and discussions where even the police was notified, the father has now started to extend help towards the intersex child and the mother. SIPD also continues to actively engage ACME, the Civil Society Coalition on Human Rights and Constitutional Law, several churches – mainly branches of the catholic, Pentecostal, and Baptist churches.
Other international partnerships: – Hosting the AJWS Global Justice program
At the beginning of the year, SIPD hosted 18 visitors on an AJWS Global Justice Fellowship program. The group was hosted at the SIPD offices and staff shared extensively with them the strategic approach SIPD uses to do its community engagement and policy advocacy work. The staff team at SIPD also learnt a lot from the group on how similar issues are handled in the USA. Following this visit and engagement with SIPD, one of the participants posted the following write up about her experience and lessons from SIPD: http://scopeblog.stanford.edu/2014/03/04/in-uganda-offering-support-for-those-born-with-indeterminate-sex/
Photograph showing the AJWS Global Justice Fellowship group outside SIPD’s office
Production of the “Identities in between” Documentary
SIPD has continued to document conversations, interviews, and lived realities in the communities where we do outreach. The documentation strategy provides us with an evidence based premise for advocacy since statistics has been a key question in each and every forum of our engagement. Policy makers, formulators and implementers asked for statistics to enable their planning and we are providing them with huge numbers of real people asking them to plan and act.
In October, the process of fusing, editing, and producing the “Identities in between” documentary was started. We had collected footage from as many communities and schools as possible. Ultimate media was contracted to do the editing and production work. The documentary should be ready for distribution by the end of March 2015.
The projects officer attended the Benetech meeting in Nairobi that was targeting on finding ways on how documentation should be put on a priority list and ways of making it sustainable. The team also participated in another Benetech refresher workshop in October, 2014 in Kampala that focused on documentation of violations and human rights abuses.
g) National Presentations and engagements with health and legal service providers
Healthcare referrals – CORSU, Mulago and Nsambya hospitals
SIPD continues to strengthen the partnership with CORSU hospital and by the close of the year, we had 23 teenagers and young adults access much needed medical procedures at CORSU through our referral system and partner support and many others have started on their hormonal treatments. Many others from previous years have also had their reviews done. We are happy to report that all operations have been a success. We are still holding counseling sessions with the teenager from Kabale and his parents to enable them deal with the social implications of a possible sex re-assignment and to know what his rights are if he chooses to take this route. Over the past months, we have established relationships with more interested doctors based in Mulago and Nsambya hospitals. Two of our client had their surgeries from Nsambya hospital at reduced costs.
World Prematurity, Save the children and Community Integrated Development Initiatives (CIDI)
SIPD participated in a one-day dialogue around improving the survival of babies with proven cost effective approaches to care. This was an opportunity for SIPD to dialogue about new interventions which are cost effective and also take on continued national advocacy to create awareness about intersex infanticide with a view to reducing it.
National Policy Dialogue on Traditional Birth Attendants (TBAs)
SIPD participated in a 2-day National Policy Dialogue, whose focus was on understanding better the role of Traditional Birth Attendants (TBA) at Serena hotel Kampala. The purpose of this dialogue was to come up with a common national position on Traditional Birth Operations in Uganda. Some of the issues we discussed included a) determining the magnitude of unskilled providers on Reproductive, Newborn, Maternal, and Child Health services in Uganda, b) Examining factors within the healthcare environment which are responsible for persistent deliverance under unskilled care, c) Proposing policy and programme action recommendations including how the healthcare system can relate with the various community providers we and other civil society organizations work with, i.e. TBAs, Village Health Teams (VHTs) and other community resource persons. This dialogue was organized by the Ministry of Health (MOH), World Health Organization (WHO) and Uganda National Health Users’/consumers’ organization.
The Equal Opportunities Commission (EOC)
SIPD and HRAPF went into a partnership to meet members from EOC and strategize on how the issues concerning intersexuality can be well represented in Uganda right from a community to a national level. The meeting was a success and there is ongoing dialogue around this.
Our partners, HRAPF, intervened in a case where an intersex family was being chased out their land in Rakai because their child was intersex and the village authorities deemed them to be witches and was evicting them from their land. The family was able to remain on the land and follow up on the case is on-going. We have embarked on a name and marker change for a 15 year old client who was raised as a girl and has chosen to live as male. Initial surgical operations, such as descending his testes from his abdomen into the sac have already been done at Nsambya Hospital.
Key Development partners that supported the success of SIPD advocacy and outreach work in
2014 included HIVOS, American Jewish World Services, Open Society Foundations, means of transport facilitated by MIVA, Anonymous, and Benetech.
On the 22/04/2013, the Support Initiative for People with congenital Disorders (SIPD) organized the first ever regional consultative meeting on sex development disparities – also known as intersex conditions – in Kampala, Uganda. The meeting brought together participants from all five East African countries in East Africa. This report narrates the conversations, outcomes, and recommendations from the meeting.
The aim of the regional consultative meeting was to provide a pioneer space for regional conversations and comprehensive consultation on intersex health and rights in the East African region. SIPD sought to bring together 20 key healthcare providers, legal practitioners, civil society leaders, government and community representatives, intersex people, parents of intersex children, and human rights activists to engage on how they can provide safe spaces for intersex children and people, as well as parents of intersex children in their respective fields.
The meeting had the following five key aims:
• Facilitate knowledge transfer, technical support, and amplified advocacy voices around health and rights for intersex children and people in East Africa.
• Initiate the creation of a critical mass of intersex allies and stakeholders who are confident in their methodologies and theories in addressing issues surrounding the right to health, choice, life, and dignity for intersex children and people in the region; and who appreciate and target the role that class, ethnicity, culture, education and religion play in fueling marginalization of this population.
• Upscale the support and advocacy networks for intersex health and rights in East Africa
• Document and disseminate best practices in Intersex interventions with a regional focus.
• Increase the profile of grassroots national responses to Intersex issues of
concern in an East African regional space.
The meeting started with the introductions of all present members, we had representatives from Kenya (GMAT F) in Kenya, Human Development Initiative (HDI) in Rwanda, ABUBEF in Burundi (ABUBEF), FOCUS Tanzania, Centre for Domestic Violence Prevention (CEDOVIP) and a media representative, Human Rights Awareness and Promotion Forum (HRAPF), Refugee Law Project (RLP), Reproductive Health Uganda (RHU), STRAIGHT TALK, RAISING VOICES, Uganda Health and Press Association (UHSPA), MARPI and the School of Public Health from Mulago hospital in Uganda, four(4)intersex youth, and three (2) parents of intersex children.
The Executive Director of SIPD-Uganda welcomed the participants and gave a background to the meeting. His prelude included clarifying definitions – “intersex” versus ‘hermaphrodite”. He further explained why SIPD had chosen the particular participants present for this pioneer regional meeting and what expectations SIPD and the intersex clients in the entire region have of the institutions represented at the meeting. In his opening remarks, he
explained intersex as an ambiguity in sex development. This is normally at the genital level and can be seen at birth however, for some people it may show much later in life as one grows as it is at the chromosome or hormonal level. Intersexuality is a minority issue which was and still is not recognized as such by most people in our regions , but most children who are born intersex are killed, their parents especially the mothers are subjected to domestic violence by the husbands and in-laws. With increased community outreach however, many parents, particularly mothers are staring to speak out and to seek safe spaces where they can ‘grow” safe solutions to the health and social needs of their children as well as their own without losing a livelihood.
Therefore, SIPD, with the support of its development partners decided to break the silence by addressing this with the parents and other community custodians, lawyers, reproductive health practitioners, counselors, government (esp., the Ministry of health, Ministry of education, Ministry of gender, labor and social development, the Uganda Human Rights Commission) and the police to see that the intersex people are recognized, and their health and rights acknowledged. The biggest problem we are facing is the lack of psychosocial support and actual health services to the clients. Intersex is a new subject in terms of programming which therefore needs to be prioritized, the most affected people are the mothers yet they are the most secretive hence making it hard to assist these children who are entirely in their hands. There is need to share experiences and get solutions to this pressing issue, need to build a critical voice to address this because many milestones are not addressed to the expecting mothers, the children in schools who are also affected, the teachers and caretakers of these children and many mutilations that are based on best guess surgery have turned out sour, and many difficulties are faced at a later stage when, for example, it is necessary for someone to change their names or sex. Our aim in convening this regional consultative meeting was to find ways in which we can upscale our networking and alliance building across borders and create more safe spaces closer to the intersex East Africans who badly need these spaces.
1.1 EXPECTATIONS FROM PARTICIPANTS
Discussions of the relationship between the intersex people and their parents (Do they face any form of rejection)
Discussing differences around sexuality and sexual orientations as opposed to sex development
How much knowledge do people have about intersexuality and policy matters
Apply the learnt knowledge back home in their own regions
Expect to get a clear understanding of intersexuality to the rest of the region
How to present intersexuality so that it is not looked at as homosexuality
Looking at ways which intersex can be disengaged from the LGBT
Expect to get clarity from doctors about what exactly happens to bring about this disorder
Having a national policy, a registry and a clinic that follows up on
Learn about the issues affecting intersex children
Broaden or include intersexuality into pediatric system/clinic and then child health care
1.2 The meeting examined the pros and cons of including the I (Intersex) in
LGBTI community in regard to organizing
Deliberations revealed that “intersex” as a collection of anatomical conditions, was shrouded in silence and even though the founder of intersex rights organizing in the region found some engagement spaces within the LGBT community, it was important to note that this lack of autonomous attention has made intersex children and people just another letter within LGBTI organizing but has not achieved the space that was anticipated to cater to the needs of this constituency. One of the thoughts from the meeting was the need to find ways to engage on intersex issues separately from – albeit in ally ship with partners from – the wider LGBT and other minority groups ones such as people with disabilities, children at risk, and survivors of torture etc. and be able to articulate the urgent gaps and needs that must be addressed. Intersex people lived in denial and found it really hard to come out and say that they are intersex and therefore the best they could do was to hide under the umbrella of the LGBT family seeking acceptance and recognition.
The other reason identified was the need to access funds to be able to organize since almost all funders available at the time had LGBT constituencies as their only target of interest.
1.3 The meeting identified the following rights of the child that activism and organizing around sex development irregularities targets to address:
Right to life
Right to education (most children drop out of schools once they feel that they are not as normal as the other children in school and this is shouldn’t be the case)
Should have a sense of belonging
Should not be discriminated against and neither should they be stigmatized
Right to informed choices regarding surgical body modifications
Most children are raped out of curiosity about their behavior in the environment
Others are used in witchcraft and some are even sacrificed
Rights of the adult with sex development irregularities
Right to appropriate healthcare and information
Right to a socially and economically productive life
Right to found a family, regardless of whether the individual can
or cannot “consummate” a union in the traditional sense.
Right to access legal support in changing best guess sex assignments at birth whenever the individual is able
Right to appropriate sexual and reproductive health services and information, including appropriate support for resultant disabilities.
Right to safe social spaces to share experiences, build community, and draw support
2.1 PRESENTATION BY DOCTOR KIGGUNDU
2.1.1 Health/Medical explanation of intersexuality
Dr. Kiggundu from Mulago hospital took participants through a scientific and clinical journey of how intersexuality occurs and what kind of medical and health issues are typically bound to occur, and how fathers are and should be considered a key part in determining the intersex child’s anatomy. The biological explanation being that only males give off the Y chromosome, which is the sex determinant and has a sex determination gene; and in the absence of which, there is likely to be a disorder in sex development.
Lessons and recommendations from the presentation: Most disorders are not life threatening because they don’t normally affect the enzymes necessary for growth. It is only those that affect the enzymes that are dangerous and children may not live for more than 72 hours. However, he recommends continued follow up of children and families for at least ten years before any surgical conversations are held.
Children should be in position to decide what sex they should be according to how they feel at a later stage in life and not have their bodies mutilated without their consent which may yield sour results later on in life and yet it is irreversible at the time. Only when it is critical and advised by a doctor should it be done at to save the life of the child. The various medical treatments available in Kenya, which is part of the region, include cosmetic surgeries, hormone replacement treatment, chromosomal and other cytogenetic tests and in Uganda, only hormonal and imaging tests can be accessed.
He also addressed some of the following participants concerns:
Can one be intersex and not know?
Is intersex a subset of Hermaphrodites?
Does the clitoris erect to resemble a small penis in an intersex case?
At what stages beyond infancy is one likely to detect these sex development disorders?
Does it have a direct bearing on gender inclination
2.2 PRESENTATION BY DIANA –CEDOVIP
2.2.1 Intersexuality and Domestic Violence
Ms. Diana led the participants in a discussion that defined violence, i.e. as any action or inaction that may cause or endanger someone’s life and how violence is bound to be a daily reality for intersex children, mother of these children and intersex people in schools and in the workplace. Much of this violence takes the form of psychological and physical abuse. Examples from the conversations included the following:
Physical abuse (Kicks, slaps)
Discrimination and isolation
Lack of confidence by parents
Rejection and neglect of child by parents, of mother by father and in- laws
Sexual abuse (curiosity and blackmail rape)
Note: Some domestic violence is as a result of infertility in a home (and is always assumed to be the woman’s problem) which in most cases may be caused by disorders of sex development and the victim may not even be aware of this.
2.2.2 Recommended interventions
Relocation especially to deal with depression and suicidal tendencies
Wholesome counseling which should be done regularly
Parents must have confidence in their children and love them above anything else
Policy advocacy at the national and regional legislative levels
Revision of the science syllabus especially in primary schools and in medical schools
Create safe spaces/homes for the intersex children and people
Service providers should provide services to all and not discriminate against the intersex
More sensitization and understanding of the term intersex to eliminate the initial term-hermaphrodite and probably adopt the use
of a more health and reproductive term so that Intersex is not continually hidden and looked at through the lens of homosexuality
The “I” should be excluded from the LGBTI family in terms of organizing and autonomously address its issues.
Create a comfortable space for people to come out and speak
The CSO should get direct representatives from the Intersex community
2.3 PRESENTATION BY HRAPF (FRIDAH)
2.3.1 Intersexuality and Rights
HRAPF provides free legal aid services to everyone including the LGBTI community. She explained to participants the current limitations within Ugandan laws. For example, the Ugandan law books don’t define intersex and everyone at birth is regarded as children, there is no differentiation and these children have rights such as;
Right to stay with their parents
Right to education
Protection from discrimination
Right to proper nutrition
Right to proper and adequate health
Therefore, intersex children should have equal right opportunities as every other child in the country. The law provides for change of sex and change of name however it should all be done before one turns 21 years of age.
The law is further abused by parents and doctors who do corrective surgery when the children are still young and cannot decide for themselves but at times we don’t blame them because doesn’t let them decide after they make
21 years hence we should join together to pass and oppose this law.
3.0 REGIONAL EXPERIENCES
There was an intersex who was fed up of being in hiding and wanted to be legally recognized which he did but this led to so much friction in the country
as the stand continued to be that God had only created man and woman and no one else in between therefore there was no such thing as Intersex. His rights were so much violated that he didn’t even go to school, didn’t have a birth certificate therefore he had no identification at all and this made life very difficult for him as he felt left out and rejected.
Accept the intersex and they will come out to address this issue and seek medical assistance as well and then also there should be provision of a 3rd gender that caters for those born intersex.
Rwanda is very silent on the issue of intersex and as a matter of fact it is almost unheard of and there is completely no organization that is dealing with this meaning that the intersex people who are there are suffering silently. The CSO is creating a health and rights segment which will be advocating for the intersex and then there will be training of lawyers, TBAs, Doctors, and parents about intersex. Rwanda reps requested for continued collaboration, especially in terms of sharing educational information and materials, which they can customize and translate to their own languages to start engaging on this issue.
Health services are provided by other organizations but ABUBEF is a member of IPPF and there is no data base about intersex people and children in general although they know that these cases exist. The only current interventions and standard treatments include silence and at best when hospitals or healthy centers receive an intersex person, the only thing that could be provided corrective surgery, most of which is not preceded by any lab or imaging tests whatsoever.
Many associations have not prioritized intersex health and rights mainly due to the social silence around it and partly due to misunderstanding it to be a sub –set of homosexuality, such that people with infertility and other sexual development issues would rather identify themselves with disability interventions. This has pushed this conversation to the back of public
dialogue even though there are several initiatives to promote health and rights in Burundi. Therefore, no specific documentation of cases has been done
The message received from FOCUS Tanzania is that they have been privately attending to parents who report intersex traits in their children but have only provided counseling due to lack of other facilities or knowledge. After initial visits, the parents would not return to the hospital but rather seek the services of traditional medicine men and women. No documentation of cases has been done.
We screened “MY SECRET LIFE” a SIPD documentary of Ugandan intersex lived realities and stories by intersex people, medical practitioners, parents, and community workers. The documentary had a clear message on what the critical needs and issues for intersex people in Uganda are, as well as recommendations on what interventions they would like to have available.
There should be more sensitization of stakeholders and health practitioners
Sensitize the local government and ministries
Documentation and follow up at all hospitals and the TBAs should also do some kind of documentation
Awareness creation and inclusion of the ministry of Education, ministry of gender, labor and social development
Media inclusion, production of more IEC materials, doctors should also engage in parent education and awareness that there is a possibility of having a child who may neither be male or female
Advocacy should be taken at a higher level for example law makers, parliamentarians,
Involve other open minded organizations that are ready to work with us
Get key messages to publish and these should be repackaged. The use
of the term “intersex” poses interpretation challenges and diverts the
issues we are trying to address to a homosexuality conversation. It was recommended that since there are many other spaces where same sex rights are addressed, the health and rights issues of children and people with sex development disparities should be de-linked to give this constituency a chance to access appropriate support systems.
Be clear on our referrals for instance; know where to go for surgeries, psychosocial support, tests and so on
Identify potential partners and allies for advocacy
Improve our referral system and share this information with participants
Share the policy concept note submitted to the Ministry of Health and the Uganda Human Rights Commission with participants so they can identify how to contribute their voices and experiences to the cause.
Need for our own clinic to attend to this just like other issues have their own like TASO for HIV, the cancer institute, Pediatric clinic, and Most at Risk Populations, Mental Health victims etc. in order to accurately document and customize health information and services.
Initiate a regional coalition working to promote to sexual and reproductive health and rights of intersex children and people.
5.0 POTENTIAL PARTNERS AND ACTION PLANS SUGGESTED BY PARTICIPANTS
National council for children
Family protection unit of the police
Advertisement houses – bill board regulators
Initiate a Facebook page and a regional list serve to continue sharing information and referrals
Donors and embassies*
Write something about Intersex on important days for instance the
World Population Day, Day of the African Child, etc
SIPD should do a more comprehensive situational analysis in Uganda to back up the pilot policy reform advocacy actions that have been started.
6.0 OTHER RECOMMENDATIONS AND OBSERVATIONS FROM PARTICIPANT EVALUATIONS
A louder voice and breakage from LGBT is needed- (Uganda) It has given a green light to other regions (countries) and some kind of commitment to start considering intersex critically- (Rwanda)
Share documentation on intersex- (Burundi, Tanzania)
We should have a dedicated clinic for practical research – (Uganda, Kenya, Burundi)
Repackage the messages and terminologies that we have to replace “intersex” with a more plain description of the actual sex development issue being addressed – ( Uganda)
Special focus should be put on the feasibility of marriage between
the “I” and the wider “LGBT”organizing.-(Uganda)
If messages could also be put in local languages-(Uganda, Kenya, Burundi, Tanzania)
More research should be made around the subject-(All participants).
Was a very crucial meeting and they are ready to render any kind of assistance to SIPD anytime they are approached-(Uganda)
The meeting came to a conclusion after the evaluations were done and generally it was a success as we managed to achieve the set goals for this meeting, which were, coming together as a collective regional voice to consult on how best we can achieve effective organizing for the health and rights of intersex children and people in the East African region and how to amplify these issues and place them on public discourse agendas in the region. The 1 pager communique being formulated is a working document that highlights the need, the objective of the meeting, the countries represented and the recommendations that these representatives put forward as next steps.
GMAT F-Gender Minority Advocacy Trust Fund (Kenya)
ABUBEFU- Association Burundaise Pour Lebien etre Familial (Burundi)
MARPI-Most At Risk Population Initiative
IDI-Infectious Disease Institute
RLP-Refugee Law Project
CEDOVIP-Centre for Domestic Violence Prevention HRAPF-Human Rights and Awareness Promotion Forum HDI-Health Development Initiative (Rwanda)
RHU – Reproductive Health Uganda
IPPF – International Planned Parenthood Federation
LGBTI – Lesbian, Gay, Bisexual, Transgender, Intersex
A cross section of photos from the meeting
After your name, the next thing that you are almost always asked to indicate in important documents is whether you are male or female. Gender is so basic to our identity that few of us stop to even think about it. However, for a significant proportion of the population, it’s not so black and white. Consider these real life stories.
Pius whose was technically born a genetic male but because of his ambiguous sexual organs, the doctors at the time decided he would be better off assigned as a female. By the time he turned seven, his private parts had started to grow. Doctors subsequently removed his testes to prevent him from growing towards the male side any further, but that did not stop Pius developing into a man and not the woman doctor and carers made him. When he turned thirty, he chose to live his life as a man. Now, you can imagine the psychological trauma he went through all those years amidst the social challenges as well he had to face.
Nancy was told that she was born with deformed ovaries that were surgically removed at the age of four. As she grew up, it was discovered that she was actually born with testes, not ‘deformed’ ovaries and that she had male chromosomes though she had only ever considered herself as female. You can also imagine how hard the psychological and social transition was for Nancy.
There are numerous people with similar emotional real life stories such as Pius and Nancy. These people are a blessing and their births and lives should equally be celebrated. However, they are intensely marginalised by society. They are branded with all sorts of negative names and even considered to be a curse. They are also often referred to as hermaphrodites, which term is inaccurate scientifically and also dehumanising. That is why it was scrapped in favour of ‘intersex’, ‘middle-sex’ or medically termed
‘Disorders of Sex Development (DSDs)’.
It is therefore important to note that whether surgery is done or not, intersex people lead normal lives except for a few instances that may require immediate medical intervention. To a great extent, these conditions can be corrected through operations.
It is however advisable to seek intersex people’s consent by adopting the best non-surgical strategy until they have a chance to determine their gender for the rest of their life. Most activists and doctors are opposed to early surgical strategies which deny a child to participate in an irreversible decision and often assign a wrong gender that consequently causes regrettable and endless trauma.
In Uganda, SIPD is taking on the major role of fighting, protecting and advancing the rights of intersex people. It offers social and psychosocial support, counselling, advocacy, medical referrals and awareness. It has so far registered over three hundred intersex children and people. It is believed that there are many more people who rather remain silent than encounter the various challenges associated with intersexuality such as being scorned and marginalised in the society,. Nevertheless, the struggle continues; however long a tunnel may be, there’s always light at the end.
For more information and to support SIPD’s good cause, contact;
Tel: +256 414 693861, Email: firstname.lastname@example.org, email@example.com,
PO Box 26608, Kampala. Uganda. East Africa.