Challenges regarding sexual reproductive health and rights for women living with disabilities persist. These include stigma and inadequate healthcare, to mention a few. This, among other things, was highlighted during a two-day dialogue held January 29-30, which brought together various institutions associated with people with disabilities, under the coordination of the Rwandan Organization of Women with Disabilities (UNABU).

The event aimed to raise awareness among key health stakeholders about the unique obstacles faced by this demographic and to foster discussions on strategies for inclusive health service delivery.

It came to light that women with disabilities are often denied reproductive healthcare and at times are even subjected to forced sterilisation.

Take 36-year-old Kandidi Mukabahizi, a resident of Ruhuha in Bugesera District, for example, who is struggling with an unspecified mental illness.

At the age of 14, she was raped, fell into a coma, and woke up with a three-month-old child. She doesn’t even know the father. Later, she discovered she had been sterilised without her knowledge. She believes this was not a good decision made for her.

"The issue of sexual abuse persisted even after giving birth, particularly when I was in a coma, due to the severity of my illness.”

She stated: "People like me face challenges because of the myth that raping someone with mental illness leads to wealth. This misconception worsens the burden, and continues a harmful stereotype.”

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"I have encountered situations where the fear of assault has stopped me from going out, due to this myth. Living alone in my home, because people are afraid that my condition could be transmitted to others, intensifies my feelings of loneliness and helplessness. This is because my neighbours do not trust me, which prevents anyone from living with me and further isolates me.

"Additionally, finding a job is challenging even with education, my sickness often leads to immediate termination from work.”

Mukabahizi revealed that the high cost of medication further adds to their struggles. "We face challenges when accessing essential medicines, as some medications are no longer covered by health insurance, which makes treatment a financial burden. We ask for affordable drugs and if possible free medical care.”

Forced family planning

During the aforementioned discussion, a pressing issue that arose was the imposition of family planning on women with disabilities. This practice not only violates their reproductive rights but also emphasises the need for tailored healthcare solutions that take into account their individual needs and choices.

According to Emmanuel Ndayisaba, the Executive Secretary of the National Council of Persons with Disabilities (NCPD), the act is a total violation of their rights.

He argued that some women with disabilities, despite giving birth to children with no disabilities, still face challenges. "Prohibiting their fundamental right to start a family is a big mistake and forcing someone while dictating how to live or make life choices is a serious violation.”

He noted: "Such a decision should be a personal choice. Even identifying a doctor’s role in procedures like tubal ligation done to the individual is difficult since there is no concrete evidence.”

Gaudance Mushimiyimana, the Executive Director of UNABU, said: "Forced family planning for people with severe disabilities, especially blindness, deafness, mental issues, and others, reflects family and society's failure to care for and protect individuals.

"The first crucial step is for society to reclaim the responsibility of safeguarding these vulnerable individuals. If families fall short in providing protection, neighbours should step in, and prompt treatment is crucial to prevent the person from ending up on the streets,” she said.

She explained that unplanned pregnancies often result from the failure of both family and community to protect individuals, leading to situations where rape can occur. Addressing these issues requires a comprehensive approach to prevent such occurrences and alleviate burdens on affected individuals.”

Mushimiyimana is of the view that individuals with mental health challenges are particularly at risk of sexual assault and unplanned pregnancies due to inadequate protection from their families. Implementing real solutions, such as family planning, becomes imperative to prevent further distress for both the individual and society at large; however, it is also not acceptable by law.

"The ultimate goal is for families to return to the responsibility of protecting individuals with disabilities and treat them as human beings,” she added.

Outdated infrastructure

Archaic structures add to the challenges for people with disabilities. Old infrastructure creates physical barriers, limiting their access and mobility within healthcare facilities and other spaces. Ndayisaba emphasised the importance of considering and accommodating individuals with physical disabilities, particularly in the construction of new buildings.

He mentioned that a large number of people with disabilities have physical impairments. Therefore, special attention should be paid, particularly in the construction of new buildings.

"Some building structures, particularly those with stair entrances, contribute to numerous injuries. There should be various options to prevent such issues. This not only denies them their right to healthcare but also underlines the urgency of modernising health facilities to ensure accessibility for all.”

Notably, women with dwarfism— a disorder characterised by shorter than normal skeletal growth—may face unique challenges in healthcare due to their smaller size and specific medical needs. These challenges can include difficulties in finding appropriate medical equipment, accessing healthcare facilities, and receiving appropriate medical care.

Mushimiyimana said effective law enforcement, along with clear guidelines for construction managers and engineers, is crucial to ensuring compliance with the civil building code, especially for outdated buildings that do not meet established laws.

She added: "Establishing a system where non-compliant buildings are denied operational permission ensures accountability is crucial. Presently, the lack of penalties and negligent attitudes underscores the necessity of establishing deadlines and timelines for compliance.”

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Mind-set, myths, and stigma

Poor mind-set, myths, and stigma arose as other obstacles, overshadowing the experiences of women with disabilities in their pursuit of healthcare and other household tasks. The societal stigma linked to disability frequently results in discrimination, hindering these women’s ability to obtain essential health services without encountering bias.

Charles Nkubili, Director General of Ndera Neuropsychiatric Teaching Hospital, emphasised that there is a misunderstanding when people refer to individuals admitted to Ndera as ‘mad’, ‘crazy’, or ‘psycho’ instead of mentally challenged.

"Some individuals face termination at their workplace simply for having been to Ndera, even after recovery. This is because people have little or no understanding about the situation,” he said.

Nkubili acknowledges that many women face this issue, burdened by numerous domestic responsibilities, which can lead to mental health challenges.

To combat stigma, Mushimiyimana said awareness campaigns are essential, in particular for families with people living with disability and the individual.

"There should be a policy to empower them on how to educate others about their conditions, to confront and challenge those unpleasant words and others. This can contribute to normalising them and combating stigma effectively,” she said.

Psychologist Celestin Mutuyimana from Baho Smile Institute said the challenge of living with a mental disability, especially in a poor educational community, is fuelled by a poor mind-set, arguing that many mistakenly link the patient’s condition to myths that should be dispelled.

He said: "Society often associates sickness with demonic spirits, leading to rejection and avoidance, which is bad. For instance, people often hold misguided beliefs, like thinking being near a person with ‘epilepsy’ can transmit the condition. Such misconceptions are common among illiterate individuals which highlight the negative impact of poor mind-set and wrong beliefs,” he said.

"In this regard, people tend to conceal illnesses initially to avoid harassment or mockery, and when inquired, families might attribute the health issue to external factors, like excessive alcohol consumption, in an attempt to deflect attention from underlying family problems.”

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Costly treatment

Mushimiyimana noted the challenges in accessing expensive medications or those who need prosthetics, some of which are not covered by insurance like Mutuelle de Santé. Additionally, obtaining prescribed drugs from Ndera involves high transport and medication costs, leading to improper usage by many.

"Taking these medications requires an adequate diet, but malnutrition is common among individuals with disabilities. Without proper medication and a full diet, some end up on the streets, or pregnant, and this is where a proposed quick solution in such cases is ‘forced sterilisation’ or ‘family planning’ comes in, further victimising an already vulnerable group,” she said.

The suggestion is to have these costs fully covered, preferably using the community-based health insurance, Mutuelle de Santé.

Mutuyimana said the availability of healthcare services is crucial, to ensure comprehensive solutions for every issue.

"There is a need for efficient health services, and there should be medications without secondary effects. Patients often experience side effects like nausea, vomiting, and more. There is a need for a more thoughtful approach to treatment than what is available,” he said.

Regarding care policies and follow-up, Mutuyimana urged early intervention for individuals grappling with mental health problems, as prolonged suffering impedes the healing process.

"Mental illness is universal, and with proper treatment, it is both manageable and curable,” he added.