BASELINE SURVEY ON INTERSEX REALITIES IN EAST AFRICA – SPECIFIC FOCUS ON UGANDA, KENYA AND RWANDA.

BASELINE  SURVEY  O N  INTERSEX  REALITIES  IN  EAST  AFRICA            iii

 

 

 

 

 

TABLE OF CONTENTS

 

 

List Of Acronyms Iv
Executive Summary 1
Understanding Our Journey: Background of the Baseline Survey 1
Goal of the Baseline Survey 1
Objectives of the Baseline Survey 1
Thematic Areas 2
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
Intersex Organizing 24
International  Advocacy Tools Specific to the Rights of Intersex People 27
Conclusion and Recommendations 29
About SIPD – Uganda 32
References 34

 

 

 

 

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

 

 

 

EXECUTIVE SUMMARY

 

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.

 

Thematic  areas

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

 

General objective

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.

 

Validation  workshop

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.

 

Report dissemination

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
The 1995

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
Registration

of Persons  Act

2015

Change of name  of an adult

(Section 36)

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

 

 

SIPD staff engaging a medical practitioner at a rural referral hospital

 

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.

 

INTERSEX ORGANIZING

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

 

Conclusion

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.

 

 

RECOMMENDATIONS

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.

 

SIPD Vision

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.

 

SIPD Mission

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.

 

Main activities

ˠ Awareness Raising ˠ Public education ˠ      Capacity building

ˠ Support (Counseling and information)

ˠ Medical and psychosocial service referrals

ˠ Advocacy and networking

 

REFERENCES

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.

 

 

 

 

 

36       SUP P O R T INITI ATIVE  F O R  P E OP L E  WITH   C O N GE NIT AL  D ISO RD E RS ( SIPD )

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Support Initiative for People with Congenital Disorders,

 

Ntinda – Bukoto  Road Kampala, Uganda

Tel: +256  414  693  861

Email: sipd.uganda@gmail.com

Website:  www.sipduganda.org

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