Following meetings centred on reproductive health, Women Challenged to Challenge (WCC) has produced reports which highlight recurrent themes that need to be addressed at the community and national levels. Reproductive health is of vital importance and to none more so than women with disabilities (WwD’s). It is an issue that cannot be taken lightly. From our work on the ground, which includes interaction with women and parents in Kibera and Mukuru Kwa Reuben dealing with disabilities, we have encountered a population that is suffering. There are continual instances of ignorance and negligence by family members and professional service personnel who often consider reproduction for WwD’s as a taboo. This stigmatization highlights that WwD’s face preconceptions and language barriers which ultimately cause them to suffer ridicule and emotional and physical pain. Through spreading awareness and providing solutions, we can tackle this growing problem that plagues Kenya.
The community level
Addressing issues at the community level is of the upmost importance. This is because social acceptance is key for WwD’s to maintain and develop social well-being. Our findings at WCC have indicated that reproductive health issues are inadequately addressed at the community level and women with disabilities prefer to give birth using traditional birth attendant’s in spite the advent of free maternal services due to attitudinal barriers. The attitudes of many professional service personnel, in particular nurses, are extremely distasteful towards WwD’s. Nurses tend to neglect the basic human needs of such people and so, WwD’s suffer. There are language barriers too between WwD’s and nurses. Deaf women experience a tumultuous relationship with many nurses as they are not able to communicate and express themselves fully. This brings in the need for more nurses to undergo sign language training so that WwD’s, in particular the deaf, are able to get efficient reproductive health services.
(WCC reproductive health workshop focusing on the problem of language barriers between WwD’s and nurses)
During WWC’s field visit, our interview with Caro shed light on the stigmatization of nurses towards WwD’s. Caro is deaf and was treated very rudely by nurses when she became pregnant. Her baby became ill and it was not till after 4 months that the nurse diagnosed her baby with autism. There was a severe lack of communication between the nurse and Caro. Caro did have a second pregnancy in which she gave birth to a healthy baby. This says a lot about stereotyping by nurses and this certainly must stop so that WwD’s are given the same reproductive health rights as those who do not have disabilities. It must be said though, that there is an improvement in nurses undergoing sign language training. The National Council for Persons with Disabilities (NCPWD) for instance has trained 127 nurses on sign language. This is a small improvement in an issue that permeates Kenyan society. In fact, KNH only has 2 deaf nurses. Kenya should borrow from the Ugandan example in which it is compulsory for medical practitioners to be trained in sign language. The situation in Kenya reflects the need for more trained nurses to deal with the scope of WwD’s with reproductive health problems.
This issue brings to light the argument that many nurses do not view their job as a calling but are rather motivated by money and ulterior motives. In a profession that cares for humanity, we should see the treating and care for WwD’s as a responsibility. There is a drastic need for improvement within the community level in order to thwart stereotyping and allow for WwD’s to gain the necessary reproductive health services they require. Through engaging the community, this will then place pressure on the Kenya’s local governments to help improve the situation. In fact, it is evident that many cabinet secretaries are disinterested in the issue of sign language training for nurses. Therefore, it is a must to engage the community and help give WwD’s the reproductive rights they deserve.
Vulnerability of children and women with disabilities.
Parents that have children with disabilities also exhibit problems relating to reproductive health. More often than not, many parents do not know how to handle certain situations. Following WCC’s visit to City Primary which has Special units that cater for autistic and mentally challenged children, we spoke to parents and they voiced any concerns they had. Masturbation was a key concern; parents noted that teenage boys engaged regularly in this behavior. They were advised to find a way to communicate calmly with their children: to find ways to distract behavior, to find out what triggers behavior, to understand that behavior change takes time, to communicate in non- verbal ways, to seek medical attention if necessary and to not hide their children.
(An educating talk with parents about dealing with reproductive health issues for children with disabilities)
The issue of hiding children with disabilities was found to be an issue of concern. Parents would often feel shame when seeking medical attention for their children with disabilities. To ensure the overall well being of children with special needs, family involvement and cooperation is required. This could be in the form of psychosocial and non-judgmental support, which would ensure parents managed their children and mitigated against inferiority vs. superiority complexes at the family level. In order to achieve this, WCC would advocate the use of meetings and support groups as structures to deal with the concerns of parents. In fact, referring back to Caro’s case, there was a large amount of stereotyping. People would often talk behind Caro’s back about her giving birth to a child with a disability. In this way, it is necessary for more women to share their experiences through the platform of meetings and support groups. This would then lead to meetings at a national level which are necessary to tackle the problem. It is through the sharing of experiences that we can begin to talk openly and start to progress as a society.
The role of institutions
The role of institutions in educating and providing information to and about WwD’s is of vital importance. Through institutions, WwD’s can make informed decisions in dealing with reproductive health issues and organizations can tackle the problem of stigmatization towards WwD’s. WCC convened a 2 day workshop, which aimed at bringing together various stakeholders such as: representatives from the Ministry of Health, (MOH) The National Council for Persons with Disabilities (NCPWD), Kenya Medical Training College (KMTC), Pumwani Maternity Hospital, VSO Jiotolee, Nurses Trained on Sign Language, Nairobi County Psychosocial support and women with disabilities with the aim of discussing reproductive health rights vis a vie disability. Each institution has a role to play, for instance NCPWD’s is the state organ mandated to oversee disability rights and ensure smooth implementation of the same. Whilst the Ministry of Health tries to ensure that people with disabilities are treated equally and have the same access to health care. The KMTC on the other hand trains service providers on sign language use as well as advocating against forced sterilization. Sterilization of WwD’s without their consent is a growing problem that challenges the rights of equality and freedom that WwD’s should possess. This was the case for Rebecca, a young married woman living with disability and who is a mother of three. She sought to deliver in a government facility where she had been attending clinics. She kept on being referred between the labour ward and maternity ward. After prolonged labour and a humiliating treatment she underwent a cesarean section and was told to sign documents before undergoing the procedure without been adequately informed. She later realized she had been sterilized. This was done without consultation with her next of kin. She later indicated that she wished to have more children and this was impossible. Eventually her husband walked out on her. Rebecca’s case highlights the importance of providing accurate information to WwD’s and quashing stereotypes, which should be a must for institutions. Institutions represent an important way forward to educate WwD’s and all those involved in the lives of WwD’s to respect their rights to the same level of reproductive health care for all.
In sum, there is a need to target reproductive health issues at the community level. More nurses must be trained in sign language in order to address the needs of WwD’s. At the same time, the issue of the vulnerability of children and women with disabilities can be addressed by educating parents through support groups and awareness programmes. The need for non-judgmental support by family members and professional service workers cannot be stressed enough. It is through this that we as a society can begin to diminish stereotyping WwD’s. Institutions have a vital role to play in this, and through such structures, accurate information can be provided on reproductive health. After all, the Constitution of Kenya guarantees the highest standard of living for all human beings and it is time to make this a reality for WwD’s.