By Davis Buyondo
The sun beat down on the dusty roads of Bumangi village, a small, rural settlement located in the heart of Mugoye sub-county, Kalangala district. The sounds of village life were in full swing as people went about their daily routines.
However, for Jane (pseudonym), a 20-year-old female with an intellectual disability, life had been far from peaceful. Her family had made the difficult decision to put her on family planning for the past five years since she gave birth to her first child, a decision that had raised eyebrows among the community members.
Jane’s story is not so unique. In many rural areas of the Southwestern Region, disability is still taboo, and families often see it as a burden. For girls and women with intellectual disabilities, the risk of sexual abuse is high. This makes the decision to put them on family planning even more complex.
In her case, the family did not realise she was pregnant until it was too late. An unknown man took advantage of her vulnerability and sexually abused her. It was a devastating blow for her family, who felt helpless and powerless to protect her from harm.
To prevent a repeat of the traumatic experience, the family decided to put her on contraception (pills) a few weeks after giving birth to her first child. For them, it was a protective measure to prevent future pregnancies that could be another burden to the already struggling family.
However, the decision has been a subject of controversy, with some questioning the legality and ethics of putting vulnerable children and women with disabilities, on family planning. Nevertheless, for Jane’s family, it was a difficult decision made out of love and concern for her wellbeing.
In a recent turn of events, she became pregnant when her family made the decision to stop her contraception. Jane was unable to identify the father of neither her first child nor the man responsible for the baby on the way.
The ill-fated family is now considering two options: either to continue her on family planning pills or to have her sterilised to prevent similar incidents in the future. She is among many teens and youths with disabilities in the region who have been subjected to birth control without their consent.
Through Philomera Hope Centre Foundation, a non-governmental organisation (NGO) that champions the rights of people with disabilities, Jane was enrolled in a tailoring program to keep her occupied.
According to the foundation staff, Shamusi Murungi and Stephen Ssonko they frequently visit her at home to provide life skills training and educate her on how to conduct herself to prevent unwanted pregnancies.
However, Murungi contends that putting disabled children on contraception will only prevent unwanted pregnancies not Sexually Transmitted Infections (STIs) such as HIV. “We also educated parents and the disabled children in the district in the event of sexual abuse,” Ssonko noted.
The foundation also promotes sexual and reproductive health, HIV/TB prevention and control programs, vocational skills training, and other services among teens with disabilities in Kalangala.
According to Act 5 (2a,b,c) of the Persons with Disabilities Act, 2020, a person with a disability shall not, without his or her free and informed consent, be subjected to medical or scientific research, harmful traditional or cultural practices, or forced sterilisation.
Nonetheless, the law appears to be too blind to detect and address the underground violation of the rights of children with disabilities in Greater Masaka (comprised of the districts of Bukomansimbi, Kalangala, Kalungu, Kyotera, Lwengo, Lyantonde, Masaka, Rakai, and Sembabule, as well as Masaka City), according to activists.
Contraception Without Consent
The Insight Post Uganda has unearthed that without their consent, disabled adolescents and teenagers, primarily those with epilepsy, Down Syndrome, intellectual disabilities, blindness, and severe physical disabilities, are subjected to birth control treatments such as sterilisation in females and vasectomy (a surgical procedure that involves cutting and sealing the vas deferens in males), implant, and pills.
This is happening at a time rape and aggravated defilement cases are on the rise in Masaka region. According to the Annual Police Crime Report of 2021, a total of 16,373 sex-related crimes went up from 16, 144 cases the previous year. These include 1,486 occurrences of rape and 3,783 cases of aggravated defilement which were reported by the end of the year.
The report ranked Masaka among the top ten regions, and districts for violent defilement and rape incidents. The region recorded 71 occurrences of aggravated defilement and 23 cases of rape only last year.
They include some perpetrated on PWDs reported at different police posts. Still, the 2022 Annual Crime report indicates 65 Children with Disability were defiled countywide.
Although Fred Enanga, the Uganda Police Spokesperson, says all reported cases were recorded, the report makes no mention of the sexual acts committed against children, women, or anyone with disabilities.
However, in May 2020, the Uganda Police Force established a Gender Based Violence (GBV) desk and Toll-Free Helpline (0800199195) through its line Department of Child and Family Protection, with support from UN Women.
During our visit to the Masaka Regional Child and Family Protection Unit and the Gender-Based Violence desk, we sought to determine the number of cases reported by persons with disabilities (PWDs). However, we discovered that there were no records specifically indicating such cases.
A police constable who preferred to remain anonymous due to the fear of reprimand, cases are often recorded without considering the individual’s disability or gender.
Ritah 16 and Cissy 17 (pseudonyms) are surviving with mental disabilities. After being sexually abused several times, their families decided to sterilise them to avoid pregnancies and children whose fathers would be difficult to trace. They are being rehabilitated and skilled at Masaka Vocational Rehabilitation Centre (MVRC) in Kijjabwemi, Masaka City.
One of the centre’s staff who preferred anonymity says the sterilised girls will never have children as a result of their parents’ decision. “As far as we know, they are the only sterilised learners in our facility,” he says.
The families of persons with disabilities (PWDs) have reported that sex crimes committed against their loved ones often go unpunished due to a lack of resources to follow up on the justice process. However, during our investigation, we also discovered that some families choose not to report these cases to the authorities for fear of embarrassment
While Act 5(3) warns that a person who subjects a person with a disability to a condition specified in this section commits an offence and is liable, on conviction, to a fine not exceeding twenty currency points or imprisonment not exceeding one year, or both, none of the victims’ family members has been brought to book.
When approached, Boaz Kamanyi, Deputy Manager – MVRC, stated that the strict rules at the centre protect both males and females from any form of abuse.
“Learners who take advantage of their colleagues with intellectual disabilities always face strict disciplinary action including expulsion,” he says.
The manager further clarified that; “When a learner seduces another learner with intellectual disabilities into having sex, the learner is expelled and the victim remains for additional counselling. As a result, they are scared and instead offer help”.
Every term, the centre invites experienced counsellors and police officers to teach them life skills and community policing, as well as self-support and leadership skills.
Furthermore, parents are counselled on how to communicate with their children in the event of sexual abuse, among other emergencies.
“Many families have a significant communication gap between parents/guardians and deaf children, for example. As a result of a misunderstanding, there is always a delayed response to sexual abuse and other problems affecting children,” he noted.
Parent With Disabilities
Esther Nakanjako, a former female councillor for people with disabilities in Masaka district, is one of the dedicated parents in Kijjabwemi village (Masaka City) who are committed to raising children with disabilities.
Despite her own physical limitations, Nakanjako continues to care for two grandchildren with intellectual disabilities in a community where attitudes towards disabled children vary. As a single caretaker, she faces significant challenges in providing for their basic needs and intellectual support.
According to Nakanjako, some parents choose to sterilise their children with mental disabilities when they reach puberty in order to prevent them from having children. Despite receiving advice from some people to do so, she declined because she believed it violated the natural rights of the boys.
In contrast to many families who reject or hide their disabled children, Nakanjako has allowed her grandsons to interact with their peers and the public, giving them exposure which has proved to be beneficial. The boys have made friends and socialised with them on a daily basis.
“The general public believes that disabled people must have disabled children yet this is a misconception. Unless it’s genetic, most of them have perfect children like my daughter,” she said, adding that people need to be educated on the science behind it.
However, Nakanjako also disclosed that in families that hide disabled children, sexual predators often turn out to be family members, making it difficult to report such incidents.
Masaka Association of Disabled Persons Living with HIV/AIDS (MADIPHA) is a regional NGO that works with communities to protect children and adults with disabilities from gender-based violence (GBV) and stigma. The organisation counsels parents and caregivers of PWD children and seeks justice on their behalf when their rights are violated.
According to MADIPHA, there are more than 1000 individuals with disabilities in the Greater Masaka Region, although the majority of them have not been officially documented.
Richard Musisi, the Organisation’s Director, says several cases of child abuse have gone unreported to the local authorities and police because of a lack of information about where and to whom the issues should be reported.
Another reason why abused children and their families are afraid to report the cases is that the perpetrators are often people close to them. “Many times, the abusers are family members, acquaintances, or influential people in the community, which makes it challenging for families to report these incidents to the authorities,” he says.
Even when cases are reported, he mentions, the authorities often tend to neglect them, leaving the victims without any recourse for justice and feeling helpless. “It’s even worse for children with intellectual disabilities because gathering vital information that can help identify the perpetrators is extremely difficult,” Musisi adds.
Although child abuse is a severe crime, Musisi observed that some members of society hold the belief that abused children and disabled adults are being “helped” because they are neglected by society, and therefore, they can be exploited as free sexual objects.
“Unfortunately, some families have a tendency to negotiate with perpetrators and settle matters outside of court, which denies justice to the abused children. Additionally, there is a lack of psychosocial support or counselling services available for these victims,” he noted.
According to Musisi, he has worked with various disabled children from wealthy families who had family planning without their knowledge. The females are given pills, injectables, and in-plants, while the males, vasectomy,” he says, adding that the majority of these children have no understanding of the treatments and operations or what they are intended for.
“The problem is more with children with intellectual disabilities, whose decisions are made by their parents and guardians. We can make an exception for such children because it is difficult for them to make well-informed decisions,” Musisi clarifies.
According to the 2020 Uganda National Disability Survey, which was conducted by the Uganda Bureau of Statistics, an estimated 12.4% of the population has a disability. This translates to approximately 5.4 million people. The survey also found that 51.8% of persons with disabilities in Uganda are female and that the prevalence of disability is higher in rural areas compared to urban areas
The National Action Plan for Children with Disabilities 2016/17-2020/21 (Ministry of Gender, Labour and Social Development- MGLSD) indicates that there are 2,027,148 children with disabilities, with 1,052,000 boys and 974,488 girls.
Human rights defender
Michael Miiro, a prominent Disability Rights Advocate and Social Inclusion specialist, states that in Masaka district, the incidence of sterilisation or long-term family planning among disabled children is common, particularly among those with epilepsy, severe disabilities, and mental challenges in Kyesiga and Kyanamukaaka sub-counties.
Many families do not want to raise children without knowing their biological fathers, so they resort to sterilising their disabled children.
According to Miiro, even health workers do not inform parents that such actions are illegal. He noted that forcing children under the age of 18 to participate in family planning violates their rights, just as it does for adults who are forced to participate without their consent.
“Having a disability does not change the fact that he or she is a living person, a human being like everyone else,” he says, noting that whether someone has a mild, severe or complex disability, does not mean forcing that person on family planning.
Moreover, he adds, everyone has a right to information about the various types of family planning methods, their usage, side effects, and so on, before deciding which one to use. “Many families do it without informing their disabled children, which is inappropriate because they have a right to know. Therefore it is a violation of their rights,” he says.
According to Miiro, they usually meet parents and caregivers of disabled children during HIV/AIDS awareness programs and discuss the ‘cruel’ practices in various households throughout the region.
However, he emphasises that no specific programme has been developed to educate disabled parents and youth about family planning and reproductive health issues.
He explains that the lack of guidance and intervention has led families to make decisions without a proper understanding of the consequences. This has resulted in a serious issue over the years, which is why he believes that there is an urgent need for a program to help parents and caretakers understand that their disabled children and youth have a right to reproductive health.
“Even companies and hospitals working on reproductive health should come out and condemn the practice of forcing children and youths on family planning. The family planning centres must also stop administering family planning on children since it violates their rights,” he recounts.
Concerning sexual abuse, he claims that some parents have been vigilant enough to report cases, but they have been frustrated by the Local Council (LCI) and police.
Poverty is another impediment to investigating cases of sexual abuse against disabled children. “It is worse in rural and hard-to-reach communities where the victim’s family can hardly travel over 30km to follow up on a case regularly. As a result of their frustration, the case goes cold and the victim does not get justice,” he adds.
Since the child protection system is broken, many disabled children are sexually abused within their own families and no one dares to report to avoid shame.
Miiro, on the other hand, urged parents and guardians to understand and appreciate their children, regardless of the nature of their disability, and to protect them from any form of sexual abuse. “Secondly, it is critical to give them a chance to have children because their children will appreciate and support them,” he advised.
Regional Family Planning Unit
Dr. Herbert Kalema, a Senior Obstetrician/Gynecologist at Masaka Regional Referral Hospital, has stated that many parents bring children and youths with disabilities to seek sterilisation or long-term family planning options.
However, he notes that such requests are usually declined unless medically necessary. Instead, Kalema advises parents and caretakers to allow Persons with Disabilities (PWDs) the opportunity to have children before considering birth control procedures. He argues that when PWDs have children, they will be able to care for them as they grow older.
Kalema’s experience has shown that many families with children, who have severe physical disabilities, and mental disorders such as schizophrenia, autism, albinism, and others, are afraid that their offspring may produce children with similar or worse conditions. However, he emphasises that this fear is unfounded and incorrect.
“We always try so much to debunk the myth and enlighten the families about the science behind it. PWDs can have healthy children once they get the right support,” he says, adding that. “Most disabilities occur shortly after birth as a result of a lack of special care at birth,”
About the provision of birth control services, Kalema explains that it is not limited to any age group, as adolescents and teenagers are known to be the most sexually active demographic. Therefore, they do not discriminate against this group in providing these services.
“After counselling, we can recommend the appropriate birth control procedure to prevent them from becoming pregnant or to abstain from sex until they are ready, among other options,” he explains.
According to the United Nations Children’s Fund-UNICEF, a child with a disability who is shown warmth and love generally grows up to be an adult with a disability who is indeed wonderful to be around.
# # #
This article was produced by the Insight Post-Uganda with financial support from the African Institute for Investigative Journalism (AIIJ) and Aga Khan University-Kenya.