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

  • Address violations and discrimination against intersex youth and adults on the basis of their intersex and gender non-conforming traits at school, at work, at healthcare facilities, and in families.
  • Sensitize its relevant ministries – Ministry of Health, Ministry of Education, Ministry of Gender , Labour, and Social Development – on the issue of sex determination
  • Document and follow up intersex births at all hospitals and the Traditional Birth Attendants’ facilities, in order to advance education on the issue and mitigate stigma.
  • Provide healthcare personnel with relevant training on how to care for intersex children and patients with respect to their bodily integrity and mental wellbeing.

 

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SUPPORT INITIATIVE FOR PEOPLE WITH CONGENITAL DISORDERS         (SIPD –UGANDA)

 

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AUGUST  2015

A PUBLICATION OF SUPPORT INITIATIVE  FOR PEOPLE WITH CONGENITAL DISORDERS  (SIPD  –UGANDA)

 

 

Table of Contents

Glossary…………………………………………………………………………………………………………..3

List of acronyms………………………………………………………………………………………………..4

Acknowledgements……………………………………………………………………………………………4

Introduction…………………………………………………………………………………………………….5

Methodology…………………………………………………………………………………………………….7

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

Recommendations…………………………………………………………………………………………..13

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

 

Glossary

  • Intersex /DSDs: Intersex can be looked at as a condition in which a person is born with a reproductive or sexual anatomy that does not fit the typical definitions of female or male or a person born with genitals that lie between male and female.

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.

  • Intersexphobia: It’s  an  irrational fear of, aversion to, or discrimination against intersex people.
  • Best Guess  Surgical  Strategy: This involves using genetic tests and historical case studies in order to determine what gender (girl or boy) an intersex child will most likely feel most comfortable in. This strategy usually also involves a tape measure test of the infant’s genitals and once the tests are performed doctors choose a gender for the intersex child to be raised in and then surgery is performed on the intersex infant’s external genitalia to make it physically look either male or female.
  • Best Guess Non  Surgical strategy:    This   involves   using genetic tests and historical data studies in order to determine what gender  (girl  or  boy)  an  intersex child will most likely feel most comfortable in. The intersex child is then raised in that gender with the understanding that the intersex person may choose a different gender at another point of their life possibly during teenage years. This goes hand in hand with counseling and education for both the family and the intersex person to better understand and deal with the social, cultural and the legal issues related to intersexuality.
  • Sex: Either of the two main categories (male and female) into which humans and many other living things are divided on the basis of their reproductive functions.
  • Sex Determination:  This  is  the sex classification or assignment of male or female done either at birth or later on in life.
  • Sexual and Reproductive Health and Rights (SRHR): Sexual and reproductive health is an integral part of health and it is a personal sense of  sexual  well  being  as well as the absence of disease, infections or illness associated with sexual  and  reproductive  activity. As such it includes issues of self esteem,   self   expression,   caring for  others  and  being  cared  for as well as a feeling of belonging attached to cultural and social values and associations. Sexual and reproductive health therefore can be described as the positive integration of physical, emotional, intellectual   and   social   aspects of sexuality. Sexuality influences feelings, thoughts, interactions and actions within the self and between the self and community. Our sexuality is part of what motivates us to seek and find pleasure in our body make up, physical contact, emotional and intimate relations, as well as reproduction.

 

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

 

Acknowledgements

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.

 

Introduction

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.

 

Methodology

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

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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.

Below   is   a   photograph   of   a teenager   who   has   suffered intense  discrimination  at  school

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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

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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

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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.

Recommendations

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,

4, 24).

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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SIPD UGANDA

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

Acronyms

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

Executive summary

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.

New Picture (1)

 

 

 

 

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

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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

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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

New Picture (1)

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.

report1In 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 report2diplomatically 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.

It is anticipated that when this is done, there will be a paradigm shift in attitudes and subsequently in policies.report3

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

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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.

Legal aid

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.

sipd report (2)

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.

web image 1SIPD UGANDA REPORT ON THE FIRST REGIONAL CONSULTATIVE MEETING ON INTERSEX (SEX DEVELOPMENT DISORDERS) HEALTH AND RIGHTS – KAMPALA, APRIL 2013.

 

SUMMARY

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.

1.0 BACKGROUND

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.

1.1THE MEETING

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
family
 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
these issues
 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

2.0 PRESENTATIONS

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:

 Ridicule
 Fear
 Verbal abuse
 Economic abuse
 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

3.1 KENYA

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.

3.2 RWANDA

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.

3.3 BURUNDI

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

3.4 TANZANIA

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.

3.5 UGANDA

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.

4.0 RECOMMENDATIONS

 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
 Action AID
 Teenage centers
 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
 Referral directory*
 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)

7.0 CONCLUSION

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.
APPENDIX 1

ACRONYMS

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

New Picture (1)New Picture (3)

 

 

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: sipd.uganda@gmail.com, jkkaggwa@sipduganda.org,

PO Box 26608, Kampala. Uganda. East Africa.

The rights of intersexual children are further guaranteed under the Universal Declaration on Human Rights under the following articles:

i. Article I – all human beings are born free and equal in dignity and rights.

Article 2 – everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any    kind, such as race, colour, sex inter Alia.
ii. Article 5 – no one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

Article 6 – everyone has the right to recognition everywhere as a person before the law.
Article 7 – all are equal before the law and are entitled without any discrimination to equal protection of the law.

All   are entitled to equal protection against any discrimination in violation of this Declaration and against any    incitement to such discrimination.
iii.  Article 2 of The Convention on the Right of the Child provides for the rights of the child not to be discriminated, based on any ground including their sexuality.
iv.   Article 3 The Convention on the Right of the Child thereof provides that the best interest of the child shall be key among the considerations, in making decisions that affect the children. Development – all children have the right to maximum possible survival and development (article 6, CRC)
v. Participation – all children have the right to express their views freely in all matters affecting them, and to have these views given due weight (article 12, CRC), freedom of expression (article 13, CRC) and freedom of thought, conscience and religion (article 14, CRC)
vi. Preservation of identity (article 8, CRC); privacy (article 16, CRC); protection from violence (article 19, CRC), health (article 24, CRC).
vii. Article 28 of The Universal Declaration on Human Rights which provides that, “every human being is entitled to a social and international order in which the rights and freedoms can be fully realized”.
viii. Article 2 The Convention on the Elimination of All forms of Discrimination against Women-(CEDAW), specifically provides that the contracting state to “modify the social and cultural patterns of conduct of men and women, with a view to achieving the elimination of prejudices and customary and all other practices which are based on the idea of the inferiority or the superiority of either of the sexes or on stereotyped roles for men and women”.
ix. Article 7 of The ICCPR provides that no one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his free consent to medical or scientific experimentation.
x. According to the Preamble to The Yogyakarta Principles, the definition of gender identity is each person’s deeply felt internal and individual experience of gender, which may or may not correspond with the sex assigned at birth, including the personal sense of the body (which may involve, if freely chosen, modification of bodily appearance or function by medical, surgical or other means) and other expressions of gender, including dress, speech and mannerisms.
xi. Children who are intersex have the same human rights as everyone else. Human rights are about respecting the inherent dignity of all human beings. The Yogyakarta Principles state that countries shall, among other things:

xii. Take all necessary legislative, administrative 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.
xiii. This definition protects the right of children who are intersex to choose freely their gender identity. In particular, Principle 18 of the Yogyakarta Principles outlines the right to be protected from medical abuses based on gender identity: