Sexual health workshops for persons with intellectual disabilities and their parents have broken the silence about this important aspect of life which is not spoken about sufficiently.
Understanding sexuality through starting intimate relations, acceptable sexual conduct, recognising the function of reproductive organs, basics of marital relations, risks and dangers related to sexuality, are some of the topics of workshops that the Association of Parents Neven from Prijedor held and organised over the course of past six months.
Sexuality of persons with intellectual disabilities is a topic rarely or insufficiently discussed in Bosnia and Herzegovina, wherefore, the workshops shed some light on the dilemmas and provided responses to numerous questions about sexuality and reproductive health that many were ashamed to talk about earlier.
A twenty-five-year-old Sadmira is a regular visitor of the daily centre of this Association in Prijedor and she says that the workshops thought her that it is not a shame to talk about sexuality and that any dilemma should not be kept to oneself but rather shared with experts and society.
“I knew that, but I learned a bit more about using protection during sexual relations,” she says “and it is very important to know what is necessary when you start having relations.”
Her friends, a twenty-two-year-old Nebojša and a twenty-eight-year-old Bojan talk about other topics that they get to know better through 11 workshops, including the knowledge of male and female sex organs and their functions, prevention of unwanted sexual relations and avoiding manipulations via Internet.
Developing and holding of workshops was supported through the Project EMBRACE (Enable and Embrace Beneficial Civil Society Environment), which was implemented by the United Nations Development Programme, and funded by the Government of the Kingdom of Norway. A special needs expert Milena Šljokavica, who has been working in the Neven Association over the last ten years and held sexual health workshops during 2020, says that the participants of the workshops showed a strong interest and commitment since they were about the important aspect of their health and they did not have many opportunities to learn about it.
She adds that the daily centre beneficiaries are persons with moderate intellectual disabilities, who need to be prompted to develop basic life skills and habits, and need to be capacitated for an independent life with support in the community.
“One of the activities is sexual education of persons with diminished intellectual capacity in order to change the insofar practice of not talking about sex life of these persons at all, or considering it as not important, not existent, and sweeping it under the carpet,” says Šljokavica and adds that a series of workshops provided an opportunity to work with parents, some of which has certain reservations.
A social worker Nenad Dobrijević explains that this kind of workshops were held for the first time in this Association, while they usually work with beneficiaries in the following four fields: acquiring basic life skills such as choosing clothes in accordance with weather conditions and personal hygiene, learning communication and social skills such as the acceptable conduct in society, working occupational therapy such as creative sessions, but also a high quality free time such as dancing or sports.
„One of the workshops dealt with the proper way of deciding to start sexual relations, which questions one should ask himself or herself to see whether he or she chose the right partner, to re-examine oneself, if one does not want it to realise that on time, and to let his or her partner know that one does not want it. In addition, to realise that the partner is the right one if he or she accepts such decision in a proper way without making any problems. Then, we learned about accepting and denying sexual requests, and also touched upon marital and parental roles, “explains Dobrijević.
„We talked about different types of relations, what is acceptable, what is not acceptable, under which circumstances and in what situations, about pregnancy, and also some topics that they found touchy – masturbation – emphasising that it is not a shame, that most people do it, but it should be learned under what circumstances and in what way. “
New experiences and new information
The Neven Association was established in 1988 by parents of children with intellectual disabilities. As of 2014, the daily centre is put in function with support from the UNDP while the town authorities allocated premises on the ground floor of an apartment building at Meše Selimovića Street in Prijedor. Around 60 children and adults actively use the daily centre. Parents are closely cooperating even nowadays, and are included in all activities and education.
„Probably they want what we all have in our lives, and it is a natural thing. It is especially good when someone explains it in a clear and extensive manner, “says Fikra Kurtović, who attended the education on sexual health of persons with intellectual disabilities, along with her daughter who suffers from Down syndrome.
“I somehow talked to her ever since she was little, and as she was growing up, I tried to explain to her everything she needs to know. This experience, however, was really special because other parents shared their concerns and discussed all issues that matter to us and to children,” she adds.
Drago Vukobrat is a single father of a child with Down syndrome and he says that parents feel better “when they share their pain with others and when they exchange opinions“. Dušanka Vranješ, with a daughter with multiple mental disabilities, agrees with him.
“Every new workshop is a new experience and we always learn something new, and it is never enough, never,” says a mother of a twenty-eight-year-old daughter. “What I like the most about workshops is that parents exchange their experiences.”
She says that she also discussed the topic of marriage with her daughter.
„She always tells me that she knows everything and that she saw and read everything on the Internet. However, she is afraid of marriage. This is what she told me once: 'I am afraid of getting an injection, let alone that I …'. Well, the time will show whether she will mature … But that is what she is afraid of, getting pregnant, those relations, giving birth.”
The EMBRACE Project supported among other things the enhancement of social inclusion and social services for the vulnerable in local communities of Bosnia and Herzegovina. One of the project objectives was to capacitate young people with intellectual disabilities with a focus on education, prevention and support to them, their parents and community. The Neven Association held fifteen workshops, eleven of which were for direct beneficiaries and four for parents. The Association also produced a brochure for everyone who did not participate in workshops and is interested in the topics.
“This society has now started to take care of these children, and before it was all totally neglected. 'So what, they are what they are, so what, deal with it'. This is what a person who does not have such a child can say, while those who do not have such a child, they must understand it is different,” says Vukobrat.
Breaking the prejudices
Milena Šljokavica believes that it is a shame to talk about sexuality in a patriarchal society, and it is even more problematic when it comes to persons with intellectual disabilities.
„These children did not attend regular schools, and they know about it even less than the others. Children who attend regular schools learn about it from each other, from their peers, in biology classes, although it is really talked about a little. Parents are reluctant to discuss this topic, they say “why do they need this'“, she says and underscores that in the workshops they followed everything and actively participated in discussion. “We learned a lot from them. I believe it was useful, parents broke the prejudices and are aware that they should talk with children.”
A thirty-seven-year-old Branka frequents the Neven Association, where she spends most of the time sowing, which is also an artisanship for which she was trained. As a person with intellectual disabilities, she is included in training sessions, and in addition to sowing, she likes other activities in the Association. People in the daily centre are the only ones with whom she socialises.
The Neven Association received a 2017 decision and permit of the Ministry of Health of Republika Srpska to render services of daily care for persons with intellectual disabilities. They, however, see this as a provisional solution as their ultimate goal is to provide accommodation and life support for independence of some individuals, which requires enormous means. Parents are hopeful that this is going to be realised and that their children will be sheltered once they are no more able to take care of them, that they will have accommodation, their friends, that some of them will have their own children, jobs and that they will feel more useful.