Jane B (pseudonym), a 20-year-old female with intellectual disability in Bumangi village, Mugoye Sub-county, Kalangala district, has been on family planning for five years since she gave birth to her first child.
Her poor family did not realize she was pregnant until it was too late. An unknown man took advantage of her vulnerability and sexually abused her, consequently, becoming pregnant.
According to her relative, they started her on contraception (pills) a few weeks after giving birth to the first baby to prevent future pregnancies which could be another ‘burden’ to the family.
Nonetheless, just recently, she conceived when her family decided to discontinue her contraception. To the family’s dilemma, she can't identify the father of her first child or the man responsible of the baby on the way.
As a result, the family suggests continuing her on family planning pills or sterilising her to avoid similar incidents in the future. She is among so many teens and young youths with disabilities who have been subjected to forced birth control without their consent.
Jane, along with several others with various impairments, is currently being supported by Philomera Hope Centre Foundation, a Non-Governmental Organization (NGO) that advocates for the rights of people with disabilities in Kalangala.
The organisation further promotes Sexual Reproductive Health, HIV/TB prevention and Control Programs, vocational skills training among other services.
They enrolled Jane for tailoring skills to keep her busy, according to the foundation staff Shamusi Murungi and Stephen Ssonko. In addition, Ssonko says, they regularly make home visits and give her life skills and groom her on how to handle herself to avoid unwanted pregnancies.
However, Murungi contends that putting disabled children on contraception will only prevent unwanted pregnancies and not Sexually Transmitted Infections (STIs) such as HIV.
“We also educated parents and the disabled children in the district in an event of sexual abuse,” Ssonko noted. 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).
Insight Post Uganda has unearthed that without their consent, the 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 and pills.
This is happening at the 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 up from 16, 144 cases. These include 1,486 occurrences of rape and 3,783 cases of aggravated defilement were reported by the end of the year.
The report ranks 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.
Mukono had 41 cases of rape, Kawempe division 38, Mbarara 33, Tororo 32, Nansana 29, Katwe 28, Kira road 27, Buikwe 24, and Amuru 23. For aggravated defilement, Mukono had 100 cases, Luwero 76, Mubende 74, Masaka 71, Katwe division 70, Buikwe 62, Mpigi 62, Mityana 62, Mbarara 61 and Nansana 59.
Although the Fred Enanga, a 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.
The helpline was established to encourage increased reporting of GBV and cases of Violence Against Children (VAC), to provide psychosocial support to victims, to provide telephone counseling services to clients, to connect clients in need of care and protection to services or service providers, to follow up on reported cases with the area police commanders, to raise public awareness about human rights, and to collect data for policy formulation.
We visited the Masaka Regional Child and Family Protection Unit and the Gender-Based Violence desk in to establish how many cases were reported by PWDs but there were no records specifically indicating so. A police constable who preferred not to be names fearing reprimand says the cases are usually entered without considering someone’s disabilities and gender.
This action raises the question of whether taking disabled children for family planning treatments is a violation of human rights or a means of protecting the children from unwanted pregnancies brought on by sexual abuse.
Any physical or mental impairment that limits a person's movement, mind, or activities is referred to as a disability. According to the Uganda Bureau of Statistics (UBOS 2016), there are over than 4.5 million disabled people in Uganda.
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.
In Greater Masaka Region, there are over 1000 people with disabilities although most of them are not documented, according to Masaka Association of Disabled Persons with HIV/AIDS-MADIPHA.
Kalangala’s Jane shares the same plight with Ritah 16 and Cissy 17 (pseudonyms) who are surviving with mental disabilities.
After being sexually abused on several occasions, their families decided to sterilize 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 center's staff who preferred anonymity says the sterilized girls will never have children as a result of their parents' decision. "As far as we know, they are the only sterilized learners in our facility," he says.
However, the parents of a 15-year-old Shakiba (not real name) in Soweto village, Masaka city decided to put her on family planning pills claiming that her male peers and men without integrity would take advantage of her intellectual disability on multiple occasions for sexual satisfaction.
"I took her for birth control pills to avoid pregnancies, but I'm so worried she'll get STIs from sexual predators," her mother explains.
Her mother took her to Smiling Hearts, an NGO that rehabilitates and provides practical skills to children with various types of disabilities, to keep her busy.
According to the families, sexual crimes against PWDs, normally go unpunished due to a lack of resources to follow up the justice process. But we established that some do not 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, the Deputy Manager - MVRC, stated that the strict rules at the centre protect both male and female 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 counseling. As a result, they are scared and instead offer help”.
Every term, the center 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 counseled 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 misunderstanding, there is always a delayed response to sexual abuse and other problems affecting children," he noted.
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 organization counsels parents and caregivers of PWD children and seeks justice on their behalf when their rights are violated.
According to Richard Musisi, the Organization's Director, a number of child abuses have gone unreported to the local authorities and police due to lack of information on where and who to report the cases.
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 perpetrators are family members, people close to the family, or prominent people. As a result, families find it difficult to report such cases to authorities,” he says.
Even when the cases are reported, the authorities, according to Musisi, tend to ignore them, leaving the victims helpless and without justice. “It's even worse for children with intellectual disabilities because gathering vital information that can help identify the perpetrators is extremely difficult,” Musisi adds.
While it is a serious crime, he mentions, some members of the society believe that abused children and adults with disabilities are being helped because society neglects them and therefore get exploited as free sex objects.
“Regrettably, some families have a tendency to negotiate with perpetrators and settle matters outside of court, denying justice to abused children. Furthermore, there is a lack of psychosocial support or counseling services for the abused children,” he adds.
However, about confinement, it is mostly wealthy families which overprotect their disabled children by confining them in their homes and putting them on family planning to avoid unexpected pregnancies, according to Musisi.
“I've 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 idea what the treatments and operations are or are meant for.
Musisi maintains that they are denied the opportunity to interact with their peers and the world for exposure, making them vulnerable to all forms of abuse by their family members.
“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.
But even so, he claims, they are not taken for family planning for their own benefit. It is done to alleviate the ‘burden’ of caring for babies born to parents who are in this condition.
“Currently, we are handling a matter of person with mental challenges who has been confined in room for 30yrs in Bukomansimbi. We are working out modalities to ensure he is rescued from the room and taken for proper care,” he says.
Parent With Disabilities
Esther Nakanjako is a former Masaka district female councilor for people with disabilities. She is one of the parents in Kijjabwemi village (Masaka City) who are dedicated to raising disabled children.
Despite her physical limitations, Nakanjako continues to care for two grandchildren with intellectual disabilities in a community with varying attitudes towards disabled children. When it comes to providing basic needs and intellectual support as a single caretaker, life appears to be difficult.
"When children with mental disabilities reach puberty, some parents sterilise them not to have children. Some people have advised me to do so, but I declined because it violates the boys' natural rights," she explains.
While many families reject or hide disabled children, Nakanjako decided to let the boys interact with their peers and the public in order for them to gain exposure, which has paid off. They have made friends with whom they play and socialise every day.
"The general public believes that disabled people have disabled children. 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 revealed that in families that hide disabled children the sexual predators are the family members which makes it difficult to report.
Human rights defender
In Masaka district, according to Michael Miiro, a prominent Disability Rights Advocate and Social Inclusion specialist, the cases are common in Kyesiga, and Kyanamukaaka sub-counties, particularly among children with epilepsy, severe disabilities, and mental challenges.
Most families, he says, do not want to raise their children without knowing who their real fathers are, which is why they take their disabled children for sterilisation or long-term family planning. Even health workers, he claims, do not inform parents that what they are doing is illegal.
Forcing children under the age of 18 to participate in family planning, Miiro contends, is a violation of their rights, just as forcing adults to participate without their consent is.
"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 emphasizes that no specific programme has been developed to educate disabled parents and youth about family planning and reproductive health issues.
As a result, the families make decisions without anyone guiding them or intervening. It has become a very serious issue over the years, which is why Miiro suggests an urgent 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 centers 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.
Sometime back, a village meeting somewhere in Masaka was called to decide on a case in which a man was accused of sexually abusing a disabled girl. Miiro recalls the residents claiming that the girl was simply lucky to have someone have sex with her. The village council, however, ordered the suspect to pay a jerrican of local gin (waragi) for cleansing rituals, which irritated the family.
"How do you expect the parents to react? Even if you go to the police, they will ask you to bring evidence with you, which may be difficult to obtain. As a result, the families resort to dealing with the situation in their own way," he observed.
Poverty is another impediment to investigating cases of sexual abuse against disabled children. "It is worse in rural and the hard-to-reach communities where the victim’s family can hardly travel over 30 kms 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.
Masaka Family Planning Unit
According to Dr. Herbert Kalema, a Senior Obstetrician/Gynecologist at Masaka Regional Referral Hospital, many parents bring children and youths with disabilities seeking to be sterilised or placed on long-term family planning, but we usually decline if it is not necessary.
Kalema advises parents and caretakers to give PWDs a chance to bear children before starting them on birth control treatment or procedure. “We understand that when PWDs have children, they will care for them when they grow older,” he argues.
According to his experience, many families with children who have severe physical disabilities, mental disorders such as schizophrenia, autism, albinism, and so on, are afraid that they can produce children having similar or even worse conditions, which is absolutely incorrect.
"We always try so much to debunk the myth and enlighten the families about the science behind. 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 giving birth control services to children under 18 years, Kalema explains that since the adolescents and teenagers are the most sexually active age group, they do not discriminate them at all.
"After counseling, 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.
A health worker at one of the Family Planning centres in Kyotera Town Council, parents sometimes collect the pills claiming they are for their own use, but they are actually taking them for their children.
"Yes we offer the family planning services to different people but it's beyond our control if a parent took them for their children," she claims.
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.
A story by Davis Buyondo