When a light weight bird gets stuck in the mud, a local saying goes, you do not want to imagine what can possibly happen to a heavy weight one. That saying, which illustrates the fact that certain groups of people can be more vulnerable, cannot be more true regarding the challenges girls and women with disabilities in Uganda face in having their sexual and reproductive health rights appreciated and respected.
If the distance to the nearest Health Centre II in some parts of rural Uganda is as long as five kilometres or more – and Health Centre IVs are as far as 20 kilometres – and it is a stumbling block in accessing antenatal and other reproductive health services by able bodied women, is it not much harder for a crippled woman?
Deaf, blind and raped
It is a difficult terrain for girls and women with disabilities tread. Agnes Naturinda* is one such woman. She lives in Kyenjojo, western Uganda. She is in her 40s. Naturinda has four children but does not know their father and neither has any man ever claimed responsibility. Two other things she does not know about her children. Yes she may touch and feel them but she has never heard their voice. Neither does she know what their faces look like.
Naturinda was born deaf and blind. An unknown man or men raped her and fathered her children. “We just see when she is pregnant, we do not know what time men come for her,” Naturinda’s sister says. Naturinda’s case was documented by the National Association of the Deaf and Blind.
Alex Kiwanuka of Reproductive Health Uganda (RHU) says Naturinda’s case is one of sexual abuse. “It is abuse because such men do not want to identify with her, they exploit her visual impairment and use her sexually,” he says.
Stigma and discrimination
Yet even when sexual intercourse is done with consent, some section of society thinks women with disabilities do not have rights to do so. “Haven’t you heard comments like ‘how unmerciful was the man who made that (crippled) woman pregnant’?’” observes Rose Abol Achayo, the chairperson of the National Union of Women with Disability of Uganda (NUWODU). Achayo says that is not sympathy but stigma and discrimination. “It is intended to imply women with disability are asexual (do not have sexual feelings). Yet like any other person, they are not only sexual (have sexual feelings) but have a right to sexually associate freely.”
The right to sexually associate freely means having choice to choose with whom and where to have sexual intercourse. But that is far from the reality Juliet Nanungwe, a resident of Kamuli Town Council experienced. The 39-year old mother of four is physically crippled. She uses a wheel chair. She is married with four children but relatives of her husband hurl insults at her. “They say I am a curse in their family because I am disabled,” she laments.
Service too late
On Friday May 30 at around 6pm, Susan Isabirye, 30, checked in at Kamuli General Hospital, perturbed. She is deaf and mute. The state of her mind could show on her face. Hellen Nakirya, an enrolled midwife was on duty. She struggled to understand what service Isabirye needed. Nakirya is not formally trained in sign language – and that’s one of the major hindrances in delivery of services to women with this kind of disability – but because she has worked on several of such cases, Nakirya has kind of informally learnt on the job, so was able to diagnose the problem.
She made several signs to Isabirye but in vain until she pulled out from her drawer an album of still pictures of pregnant women that Isabirye signaled that was the problem for which she checked in at the hospital. Further probing revealed Isabirye was two months pregnant yet she was using Injectaplan. “How then did I get pregnant?” she wondered, with obvious displeasure.
Nakirya was to find out the health worker Isabirye earlier visited was not as experienced. Isabirye then needed an appropriate contraceptive option. The health worker did not understand what Isabirye needed until after days, probably by guessing, that she was given Injactaplan, but way late. Isabirye conceived.
While any woman using contraceptives can incidentally conceive due to various reasons such as skipping pills routine, Nakirya says women with disability are more prone. “A lot of information on reproductive health such as family planning services which is crucial for mothers is in audio format, how then do you expect a deaf woman to get it?”
Nakirya illustrates how the problem of language barrier affects service delivery, “You may have wanted to tell her to sit and wait but she interprets your signal to mean you did not want to attend to her so she goes away. Yet a single day missed in the routine use of contraceptives, may cause her to get pregnant.”
Health centres struggling
Joy Nakyesa, the NUWODU’s Programme Assistant for Sexual and Reproductive Health and Rights in Kamuli and Buyende districts says the problem is compounded by inadequate number of trained health personnel in sign language. There is also inadequate supply of user friendly facilities like adjustable beds in most public rural health centres.
With health centres struggling to maintain proper sanitation amidst high patients’ numbers, the affect this has on women with disability, as Nanungwe explains, is appalling. “Where my wheel chair cannot pass sometimes I find myself walk through dirty water yet I wouldn’t want to dirten my clothes,” she laments. “Then upon in the queue some people do not respect us but by pass and beat the queue. When you finally get to see the health worker, some of them do not handle us with dignity.”
Crippled, why are you pregnant?
There are allegations of midwives insulting women with disabilities. Nakyesa explains, “We receive reports of midwives insulting women with disabilities that ‘you mean you cannot climb this (maternity) bed, how come you climbed the bed to sleep with your husband?’ But who said sex must be performed up on the bed? It is a notion that women with disability are not entitled to sexual rights like everybody else.”
Martin Byamugisha of Naguru Teenage Centre says while the centre is yet to compile data, the most cases of abuse registered at the centre on girls with disability is rape. He noted that the centre faces big challenges in delivery of appropriate services. “When a deaf girl comes to us with a problem and she can write then we are able to offer appropriate service. The challenge is when she cannot write.”
The solution would be to consult a third party, say a relative, but that compromises the girl’s right to privacy. The other alternative is hiring a specialized person. Edward Atenu, a communication specialist and Managing Director of Heritage Communication 256 Limited however observes that because of unique skill such persons possess, communication specialists for people with disabilities (PWDs) are often expensive and their services may not be affordable by ordinary persons. He advocates for specialized clinics for PWDs especially in public health facilities.
Where is the remedy
Like other cross-cutting development themes such as gender, youth, environmental sustainability that have been mainstreamed in development programming, NUWODU’s Achayo says disability should be integrated in development programmes. “In the health sector for example, health workers should be sensitised on the use of disability sensitive language and as many personnel as possible be trained in sign language,” suggested Achayo. “We advocate for the rights of girls and women with disability and we are building partnerships with agencies across all sectors impressing upon them the importance of incorporating disability issues in their programmes but we want to see a situation where even if NUWODU ceased to exist, such girls and women are catered for.”
RHU’s Kiwanuka says the solution also lies in stopping stereotyping of PWDs. “Disability stereotypes add to the difficulty and stigma experienced by PWDs – that they are asexual, not desirable, cannot have ‘real’ sex, do not need sex education, are not attractive, have more important needs than sex, should not have children or should only have sex with each other. This needs to be stopped,” he says.
Atenu says the challenges and so the remedies vary with the kind of disability. “What a deaf woman for example needs maybe different from the blind. One may need to communicate to the blind using braille and to the dead, through visual images,” he says. Atenu however observes it equally important PWDs are trained in a language they can communicate, for lack of such skills even when the service provider is literate makes it difficult to provide a service. There are few of training schools for PWDs in the country. One such facility is the Ntinda School of the Deaf. But if the general cost of training for health personnel is still a big challenge, what about training in special needs that PWDs require? It is a light weight bird versus heavy weight bird phenomenon.