“The main purpose of our service is their personal development – making them as independent as possible, and this is part of it.”
People with learning disabilities (PWLD) face high levels of stigma in Macedonia. With few day centres to cater for them, many simply stay at home with their families. The lack of visibility of PWLD in the community means prejudice and misconceptions about them continue.
While many families are loving, some discrimination begins at home, with families viewing such children as something to be ashamed of. Others are overprotective, while some try to gloss over their children’s disabilities and get them married so they can enter “normal” life.
One misconception about PWLD is that sexuality is not, or should not, be an issue for them – that they simply should not have sex. Of course, such young people are sexual beings just like everyone else, with feelings and desires, and the same rights. Yet they are also more vulnerable: people with learning disabilities are said to be three times more likely to become victims of sexual abuse than people without disabilities.
Parents, fearful that their children may be exploited, or fall pregnant, may not talk to them about their sexuality, or keep them shielded from information about the issue, thinking this is the best way to protect them. When they show signs of wanting to explore their sexuality, such as masturbating, they may simply be told this behaviour is bad and that they must stop.
Macedonia is a country where sexuality education for anyone, let alone young people who are out of mainstream education, is limited. In mainstream schools it is taught only as one part of the broad “life skills” curriculum, which also includes topics such as sewing, and housework. Against this backdrop, sexuality education for young PWLD is a double taboo. HERA believed denying them such knowledge left them unnecessarily vulnerable to potential abuse, and deprived of their sexual rights.
In 2009, IPPF’s Member Association in Macedonia, The Health Education and Research Association (HERA), was one of four Member Associations offered funding to develop knowledge on working with PWLD by the IPPF European Network. Three members of staff travelled to Northern Ireland to learn from the FPA’s work there, accompanied by a representative of the Ministry of Labour and Social Policy, the dean of Skopje’s Faculty of Philosophy, a parent of a child with learning disabilities and an employee of Poraka, a Macedonian NGO that works with PWLD.
Back in Macedonia, HERA developed a manifesto document in partnership with stakeholders, as well as a plan for sexuality education to be delivered in centres attended by PWLD, by staff there who clients knew and trusted, after training with HERA. The aim was to teach users how to protect their sexual and reproductive health, and equip them to have pleasurable, responsible and healthy sexual lives. HERA’s staff would also take part in some sessions at the centres.
Today, the programme is running in six day centres and one state-run residential institution. So far, 81 users have benefited – 31 female and 50 male. HERA aims for it to be sustainable, with new members of staff in each centre being trained by those already involved. There are now plans to begin training parents in the same methods, so that they can back up the messages their children are being taught in the centres at home.
- 1. Vesna Turmakovska, a psychologist with HERA, is leading the sexuality education programme. At the organisation’s head office in Skopje, she explains how working carefully with parents was crucial to its development.
“Sexuality is part of these young people’s lives; they’re sexual beings and they express their sexuality on a daily basis.
“At the beginning some parents were afraid that the very fact of learning about sexuality would encourage their children to have sexual relations. Others said this was a perfect idea and this was the right time to do it, because they were concerned about what would happen to their children when they were gone from this life. Another group of parents only wanted to cover general subjects like differences in body parts and development during puberty.
“Fortunately, we succeeded in reassuring the parents. We explained that it was about giving skills to their children to make them capable of defending themselves from potential abusers. We also explained that they need skills to become more independent in life, and that they have a choice over who they will hang out with, who their friends will be, and need to be able to make a distinction between friendship and love.”
Across the city at Poraka’s day centre for adults, the light-filled central room, with its open plan kitchen and large work tables, is a hive of activity. The centre aims to help users be more independent in their daily lives. Each morning half the group visits the shops and supermarket just below the centre, to buy food for the day’s meals. The other half is in charge of the cooking. Other activities at the centre include art, music, and – since 2010 – sexuality education.
In a separate room, Marijana Serafimovska Dimitrieska is delivering a session for a group of around ten young women. She uses a large piece of paper covered with cut out pictures of couples and individuals to generate a discussion about appropriate behaviour in different relationships.
The group looks at pictures of families, and Marijana explains that family members have rights and duties to each other. Then they move on to friends. What do friends do together?
“Hang out outside the centre, drink coffee, work in the centre,” the group suggests.
“Do friends kiss on the mouth?” Marijana asks. There’s a chorus of “no, no, no”. Correct, says Marijana, though you can hug friends, especially if they’re worried or unhappy and you want to comfort them.
“However,” she reiterates, “friends don’t kiss on the mouth. They don’t touch each other’s intimate parts. When you drink coffee you don’t touch each other’s bodies.”
Marijana asks what is allowed in relationships between boyfriends and girlfriends that isn’t allowed in the relationships already discussed. “Look at the pictures, what can you see?” she prompts.
“A bed, a bedroom, there’s a man and a woman.”
“What are they doing?” Marijana asks.
“They’re lying next to each other.”
Marijana describes the picture to the group: “They’re covered but they have no clothes on. They hold hands; they have eye contact, their bodies are very close. They can even touch each other’s faces. What does that mean? That they want to be close, or not?”
The group agrees they do want to be close. “This closeness is allowed for them,” Marijiana says. “They feel nice, they have feelings for each other and they want to be together.”
She is keen to make another point: “Don’t mix sex with having children. Each time someone has sex it doesn’t lead to children. They can have sex just to have pleasure, not only to have children.”
“We can protect ourselves with a condom,” one member of the group says. “That lady is smiling because she likes it,” she adds.
Marijana agrees: “They do smile because they like it, both of them. Not because somebody made them do it. It’s very important when you have a sexual relationship for both the people to like it and agree that sex can happen.”
She cautions on another issue: though boyfriends and girlfriends can touch and even have sex, they can’t do it in public.
Finally the group examines other types of relationship: a doctor can touch you but it is a professional relationship, they are told. There’s no hugging, no intimacy, and strangers who are on the bus together don’t touch or show affection either.
“There were questions that they couldn’t answer by themselves,” Marijana explains. “They had feelings towards people that they didn’t understand. “There was a period when many of the people who worked here began to get married and start their own families. The users here were very curious. They would start smiling or giggling and ask whether we had sex. They were interested in how children are born. But they thought you could get pregnant by kissing someone, which they were taught at home.
“The users are also very interested in homosexuality – they want to talk about whether it’s wrong or right.”
The sessions have had a positive effect, Marijana says. “There’s a sense of privilege that we talk about these things with them without any shame – it means they feel close to us. They can talk about these things freely with us, they can discuss their feelings towards other people.
“We have discussed with them how it’s not bad or shameful or dangerous when they have a sexual need to masturbate – or touch themselves, as we put it. But we also pay a lot of attention to telling them this is done in a private room, when they’re alone, under a blanket, with the door shut. The best, most positive thing is that we’ve made them then understand it’s not bad or wrong to have sexual desires, to have a sexual life.”
- 2. HERA’s professionals working in health settings have also received training in working with people with learning disabilities.
Snezana Georgieva Janevska is a gynaecologist who works at the organisation’s small youth friendly centre in the residential area in the centre of Skopje, and explains how she deals with the added challenges in such cases.
“The approach is that they experience me as a friend first,” she says. “I try to explain what’s going to happen in the examination step by step. That means we need time. This youth friendly service is convenient before this because we have that time here. Public health institutions can’t offer this, because they’re usually overcrowded.
“Some of the young people push me away, some close their legs, some cry. Sometimes they’re stiff, sometimes they want to see what’s going on. You need lots of patience – the examination can take 20 to 30 minutes, rather than five.”
In Gostivar, a large town around 70km south west of Skopje, HERA has been working with a state-run centre for PWLD.
In an education session there, female users lean eagerly across a table to look at line drawings of bodies and point out the changes that occur as boys and girls grow up. They recite the names of different body parts, and are congratulated by their teacher for using the correct words for penis and vagina.
Next they practice using sanitary towels. One girl is given a pair of white cotton pants and the group watches intently as she girl carefully pulls the packaging around the towel open and unfold its. “This is not shameful,” the teacher reminds the group. “It happens to everyone.”
The centre’s special educator, Zaklina Stepanoska, recalls how worried she was to start with that the parents would not accept the idea of the programme. In the event, despite some fears, the reaction was far more positive than she had anticipated.
“There were parents who cried when I told them about this,” she says. “I asked them why and they told me it was because they had thought their children, who were in their mid-20s, would never fall in love or have girlfriends. It touched them very much and surprised them that somebody had thought about their children receiving this education and maybe having a relationship.”
The programme has already been useful in changing behaviour in the centre. “In the spring and summer, when we’re outside in the garden a lot, the girls will go crazy when some guy walks past, because they like boys,” Zaklina explains. “They will shout and talk to them even though they don’t know them. So we make them understand that they can say ‘hi’ to people they already know, but not strangers, unless we allow them to.
“We also had a big problem with boys masturbating. Since the sessions on public and private space we don’t have this problem anymore. When a staff member sees that someone is going to start doing it, they ask them to go to the toilet, or they take them to a private space. They don’t say ‘stop’, because if they’re stopped they can become aggressive. Back then they didn’t know how to deal with this. Now they tell them it’s not suitable to do in public. And the boys hardly ever try to do it anymore.
“We had a problem, too, with girls not knowing how to put sanitary towels in. Their parents would put a towel in at home and the girl would forget about it. Now they bring towels themselves and they know how to change them.
“The young people are very interested in the programme. It’s something new. They’re very interested in the fact that can become independent outside the centre, that they can go out alone, that they can be with someone, with a boyfriend or girlfriend, and that they are allowed to do that. Because their parents usually scorn them when they started talking about these things.
“There are changes in the way they behave. They don’t talk to strangers any more. They know the appropriate words for parts of the body, and they’re not embarrassed to say them out loud any more. In the beginning when we had individual sessions the girls would start crying and saying ‘this is shameful’. They would not even utter the words. Now they’re free to talk about it. They have become closer to us. They would come to us and say if they have a crush on somebody. They laugh about it, they tease each other. They’re much more relaxed than they used to be.
“There are two users here who act as boyfriend and girlfriend in the centre. They live far apart but here they watch films together, they dance, they kiss. They can’t be separated! It’s a positive thing; they are happier.”
Vlado Krstovski, who co-ordinates the sexuality programme for Poraka, says there is still a lot to be done, across the board, to improve the lives of PWLD in Macedonia. But he believes the partnership with HERA has been a significant step forward in the area of sexuality.
“Disability issues are still not mainstreamed in the laws, policies and institutional settings in this country – the equality of PWLD is not top of the political agenda,” he says. “A lot more should be said and done in every field so that the prejudice will be eliminated.
“Poverty is also a big issue for families. If you have a child with a learning disabilities then one parent must stay at home to take care of them, because we don’t have kindergartens for them. Families struggle financially.
“There is a lack of services: we don’t have any respite care, social clubs, free sports and leisure activities. So most people are staying at home with their families and they’re not visible in society. That’s why prejudice is still at a high level: an average person cannot easily be in contact with these people to find out that they’re not aggressive, not ill, that they will not hurt them.
“Even among the professionals working in the sector there are lots of prejudices. When we did the training one publicly announced that she didn’t think sexuality training had anything to do with her, because her users were not sexual beings.
“We are dedicated to work for the advancement and development of human rights in general of PWLD, and sexuality is one of the human rights. This work has changed users in many positive ways. The main purpose of our service is their personal development – making them as independent as possible, and this is part of it.
“One day they will be alone, without their parents, and they will have to understand the world we are living in. They will have to know who is a friend, what is friendship, what is an intimate relationship, what is sex, how to practice safe sex. What is appropriate and what is not, which is public and private space. This is all connected to independence.
“We’ve made an excellent start together with HERA. They have expertise on their side on sexuality issues but we have expertise on PWLD. We joined forces, and that’s why this programme is so good. The biggest success is that we opened up this issue.”
- 3. Macedonia: Sexuality Education for Young People with Learning Disabilities ..and their Parents
Lara’s story
One misconception about PWLD is that sexuality is not, or should not, be an issue for them – that they simply should not have sex. Of course, such young people are sexual beings just like everyone else, with feelings and desires, and the same rights. Yet they are also more vulnerable: people with learning disabilities are said to be three times more likely to become victims of sexual abuse than people without disabilities.
In Macedonia, HERA, IPPF’s Member Association is delivering sexuality education in centres attended by PWLD. The aim is to teach users how to protect their sexual and reproductive health, and equip them to have pleasurable, responsible and healthy sexual lives. Today, the programme is running in six day centres and one state-run residential institution.
At Poraka day centre for adults in Skopje, Marijana Serafimovska Dimitrieska is delivering a session for a group of around ten young women. She uses a large piece of paper covered with cut out pictures of couples and individuals to generate a discussion about appropriate behaviour in different relationships.
One of the most engaged participants in the group sessions is Lara, 27, who has behavioural problems and learning disabilities. She is full of energy, bustling round the centre’s kitchen and taking a leading role in the cooking. Every day she travels alone on the bus. It’s an important mark of independence – but one that means she must know how to keep herself safe. She has been coming to Poraka for five years.
“I love to come here, because I spend time working a lot,” Lara says. “I like that I’m active all the time. Working in the kitchen is my favourite part – when we prepare lunch, chopping the vegetables. I also enjoy the art classes.
What does she feel about the sexuality education sessions? “I feel good about them and I find them useful,” she says. “ If someone wants to force us we can push them to protect ourselves, to defend ourselves. And some things that you can do at home only, and when you’re alone but not in public places.”
Lara says she had a boyfriend once, and would like one again – if she can find one. “I need to behave appropriately, not be aggressive with him, and use a condom,” she says.
HERA aims for the programme to be sustainable, with new members of staff in each centre being trained by those already involved. There are now plans to begin training parents in the same methods, so that they can back up the messages their children are being taught in the centres at home. Lara’s father, Branislav, understands why.
Branislav teaches electronics in a high school, and attended several meetings about the proposed sexuality education programme before it began. He drops in at the centre after the session to discuss his feelings about the work.
“At the beginning I thought it was a strange topic to discuss, but over time, as I understood there would be benefits, I started participating in the consultations,” he says. “I accept that it needs to be talked about openly here in the centre with the young people – particularly about sexual abuse, but also about their sexual lives.
“I’m from the old school; I don’t discuss these things with my daughter. My parents didn’t discuss these issues with me. It’s difficult for us to have an open forum for discussion, so it’s better to do it in the centre. It’s nice to have them learn about what their behaviour should be like outside this environment and outside the home environment, to know that they shouldn’t stop and talk to strangers.
“We need to repeat these things because they forget. Every day the same thing happens, they go out on the street and stop somebody and start talking with them. We need to keep in mind the times we live in, and the fact that sexual abuse is very high among people with learning disabilities.
“Lara has started discussing these things openly now. She’s very close to her aunt – my sister – and they talk about these issues.
“There are all sorts of different parents here and for some of them it was difficult to accept this programme, but in the end they did. The way of persuading them was to tell them that ignorance is bad, that to know is good.”
Written by: Rachel Williams, The Guardian
