The sexuality of people with intellectual disabilities and their right to be married is a topic that has in recent times increasingly occupied the community. This is an area that has throughout history been totally ignored, and we can say that even today it is influenced by the negative viewpoints of the environment. However, more modern views on rehabilitation that are founded on inclusion, equal rights for the disabled and the right of intellectually disabled people to represent themselves have increasingly brought about a change in the degrading image of people with intellectual disabilities as passive recipients of assistance, who are incapable of living an independent life and functioning in a community, or as “eternal children” who have no need for sex and for self-realisation through a high quality relationship with a partner.
Up to the 1960s, views concerning the sexuality of people with intellectual disabilities were formed under the influence of the eugenics movement that appeared at the end of the 19th century and lasted until the 1940s. The movement was guided by the idea that the human species needed improving through selective reproduction. In this context the appearance of intellectual disabilities was considered “a serious problem for civilisation”, and directly connected with sexual deviancy and promiscuity. In order to “protect” society, people with intellectual disabilities were subjected to isolation, segregation and sterilisation (Bratković, Bilić, 2004). Although progressive social and humanist trends of the 1940s and 1950s made considerable changes to the attitude towards the mentally disabled, their sexual needs were still ignored and the “problem” of sexual behaviour was “settled” by sexsual segregation in institutions. It should be mentioned that statutory provisions concerning sterilisation were kept in some countries until the 1970s (Bratković, Bilić, 2004). With the appearance of the philosophy of inclusion in the 1990s in the West, there was a positive effect; all disabled persons, including the intellectually disabled, were more able to make good their own equal rights. They were encouraged to be actively included into the wider social milieu. Instead of separation in institutions, the creation of conditions for life in the local community as normal as possible was aimed at. Through a spectrum of services that helped the disabled to exercise rights, care was taken of individual particularities and needs of individuals. In this context, a positive effect was produced on the development of various forms of sex education for the intellectually disabled (Bratković, Bilić, 2004).
The quality of life of each individual presupposes the degree to which that individual takes control of his own life. It is considered that quality of life has been achieved when the basic needs of the person have been met and when the person is able to effectuate their objectives and capacities in important areas of life. From this it is seen that quality of life is not something that a person simply has, or obtains, but rather creates, with other people. As such, it is then unique for each individual and each situation in which the individual finds himself or herself (Bratković, Rozman, 2007). It is impossible to discuss the quality of life without including the aspect of sexuality. It is not something that can be separated from the individual but includes the whole of the person in interaction with the social environment. Sexuality is developed within the context of social development, via communication and social interaction, as well as emotional experience. For the development of sexual identity and the build-up of an appropriate social and sexual role, there is a crucial importance in early social and emotional experience and the environment’s reactions to and influence on the forms of sexual expression and behaviour during the course of development.
In the intellectually disabled, there is no divergence in the physical aspect of sexual development from people without disability. If there is no disorder in general physical development, sexual development will be in line with age. Accordingly, people with intellectual disabilities are not asexual but have sexual needs and feelings just like people without such difficulties, and for them the possibility of satisfying these needs and the capacity for sexual expression is just as important as for the rest of the population (Bratković, 2000).
Quite often, when people with intellectual disabilities are concerned, their restricted ability to function intellectually is cited as the “source of all behavioural difficulties”, and no account is taken whatsoever of the general law that sexual behaviour is formed on the basis of early experience with the environment, right from the period of early childhood. The role of the parents is primary in this. Parents of children with intellectual disabilities are often much burdened by the diagnosis and from the outset have different expectations and behaviour, in connection with which they often discourage the child from expressing any characteristics of sexual development. This attitude is also often adopted by professional staff in everyday work with the children. If life of the individual is marked by an unnatural seclusion from society and by an institutional way of life, it is clear that in such inappropriate conditions inappropriate forms of behaviour will also develop, such as to frustrate the assumption of the role of adulthood − which is crucial for optimum social-sexual development. An over-protective attitude of the society, which thrusts upon them the role of “eternal child”, deepens the disproportion between physical/biological and psycho-sociological development. Infantilization and resistance to intellectually disabled people growing up affects the experience and the access to information related to sexuality, resulting in the appearance of difficulties in sexual expression and behaviour. In this way people with intellectual disabilities are often restricted in the establishment of social relations that do not necessarily have to be sexually marked and denied the possibility of making close friendships. As a result of the absence of appropriate educational influences, persons with intellectual disabilities often develop a distorted impression of their own sexuality, while knowledge about sexuality is based on restricted, incomplete or inappropriate information and experience. The curricular contents of sexual education and the procedures in which they are delivered should be individualised according to the capacities of the individual to function intellectually, to their previous knowledge and experience about sexuality and sexual behaviour as well as the interpersonal communication skills they have acquired (Bratković, 2000). Sexual education, as a structured form of support to the intellectually disabled is one of the preconditions for helping these persons to satisfy their needs and to achieve general satisfaction and socialisation. Since sexuality affects the whole of the person and a person’s feelings, viewpoints, thoughts and behaviour with respect to self and others, Melberg, Schwier and Hingsburger (2000) point out that for these very reasons it is important to teach the intellectually disabled how to express their own sexuality, when and with whom, for their own good and in order to be more successfully accepted in the community (see Slavinić, 2008).
The possibilities for people with intellectual disabilities to form matrimonial unions
People with intellectual disabilities are capable of contracting marriage, capable of exercising their rights and of living a life that satisfies them. A proof of this can be found in the first examples of marriage between intellectually disabled people in Croatia. These are four couples who contracted marriage in 2005 and 2006. For a long time they had lived an institutional manner of life, but later on became clients of the Independent Residence Home. In November 1999, this Home was founded by the Association for the Promotion of Inclusion in Zagreb. It is a programme of residing in a community with support that is given to adults with intellectual disabilities by being accommodated in a communal setting with the provision of support for these persons to be able to live as independently as possible. For adult persons with intellctual disabilities, residence in a community with support provided represents a good alternative to institutional accommodation. Clients on the whole choose their place of residence themselves, as well as the persons with whom they want to share their living space. Accordingly, there is a possibility that more intimate relations and relationships among the clients can develop.
These couples were able, before getting married, to attend a sexual education and advice programme (run by Daniela Bratković, DSc, assistant pro¬fessor at the Education-Rehabilitation Faculty, Zagreb) while persons from the closer professional and family circles provided support immediately in situations during everyday life. The procedure for contracting marriage is very demanding for people with intellectual disabilities. In the Republic of Croatia, marriage, legal relations within marriage, an extra-martial union and the family are determined by the Family Law (Official Gazette, no. 169/98). Article 27 of this law states that persons who have been declared legally incompetent or incapable of making informed judgements (Paragraph1), which is a category that covers most people with intellectual disabilities, are incapable of contracting marriage. And yet such individuals can exceptionally contract marriage, which requires a separate non-litigation procedure in which the court can allow marriage to be contracted by persons who have been declared legally incompetent and yet are ascertained to be capable of understanding the meaning of marriage and obligations that derive from it. Marriage in such cases is determined to be clearly in the interest of the person (Article 27, Paragraph 2).
From this it is clear that the procedure has to be filed by the actual persons with intellectual disabilities, which in current practice has proved to be very difficult, for if they at all obtain information about the possibility of contracting marriage in this way, they are most often dependent on the good will of their guardians or their readiness to give them assistance. As well as the guardians, the procedures have to involve the representatives of the Welfare Centre. If neither party voices dissent, the court will in the further procedure examine the ability of persons who file the procedure and evaluate whether they are capable of understanding marriage as well as the rights and duties that derive from it. We shall cite a few examples of statements by people with intellectual disabilities about their partners and the procedure for contracting marriage (01):
Z. N.: We went out for a long time and lived together before getting married. I like everything about him and I didn’t like anyone else. And then he came to live with me. ... And we slowly decided to get married. We didn’t have to go to the court like other people.
L. O.: I. was the first to say let’s get married, and I agreed... Because we love each other. He’s good to me. I wouldn’t give him away to anyone. I actually stole him from one girl!!!
V. K.: M. was my first choice. I fell in love with her and it’s clear why we got married. Mother gave me permission. Every mother has to approve.
B. Č.: It’s no secret. They asked me that at the court. And I said why... Because it’s good for everyone. I said I wouldn’t have anyone else. And I won’t go to the court or the Parliament any more, I just want my wife.
M. K.: Because I love him. He’s tall and good-looking. He’s good to me and does what I say.
L. O.: We had help. We talked about marriage in the Association. We talked about everything. We went to the court and said that we loved each other and that we would be good and wouldn’t fight.
I. O.: Yes, all that has to be settled in court. It’s all very official. They asked you there why you want to get married... For love, to be able to live together, to be man and wife and help each other.
V. K.: There were problems. We had to go to the court. They asked us why we wanted to get married. They went with us from the Association and we talked about it. It’s most important for us to help each other. When someone’s ill and so on... And then Martin and I went to the priest to set the date and to the registry office in Gajnice...
B. N.: We didn’t have to go to the court. Other people ought to with no court as well. And those from institutions. We agreed to get married, and everyone helped us with the preparations.
The possibility of choice is what makes us human beings. We often invoke this basic human right in everyday life. It is inconceivable that someone else should decide for us and speak in our name. In such a case we are ready to take up a very resolute position in order to emphasise that we are adult enough and competent to decide for ourselves. But in the case of people who are intellectually disabled, the impossibility of making a choice is a problem that arises in a wide range, from everyday decisions, such as what to eat, to put on, to fundamental choices about lifestyle, relations with a partner, choice of residence. Because of the frequently deep-set views that people with intellectual disabilities are in fact “eternal children”, incapable of an in-dependent life or of taking on the roles that adulthood brings, society adopts the facile attitude that from the point of view of sexuality too they are “just children”. The truth is of course very different. Partnership, parenthood, a proper job and an independent life are not reserved for selected members of the population but are the right of each person. Sexuality is a central dimension in human life, innate in each of us. It is biologically given; we are all born and all develop with it, and it is interwoven into our views, thoughts and behaviour. This clearly shows that it cannot be denied or diminished, and that every person needs to be given support to develop his or her own potentials, to accept themselves, and to live a high quality and fulfilled life.
— Translated from Croatian by Graham McMaster
(01) Statements cited from: Ivana Slavinić, Bračne zajednice osoba s intelektualnim teškoćama [Matrimonial Unions of Persons with Intellectual Disabilities], undergraduate dissertation, Zagreb: Faculty of Education and Rehabilitation, 2008.
Bratković D. (2000). Education about the sexuality of persons with intellectual disabilities − a manual], Zagreb: Hrvatski savez udruga za osobe s mentalnom retardacijom.
Bratković, D., Bilić, M. (2004). “Some Indicators of Subjective Experience of the Quality of Living of Adults with Mental Retardation, Who Live at the Independent Residence Home, Zbornik radova 5. međunarodnog seminara: Dobra edukacijsko-rehabilitacijska praksa za 21. stoljeće, Trakošćan, 14-16 April 2004, Savez defektologa Hrvatske, (p. 191-201).
Bratković D., Rozman B. (2006). “Factors in a quality of way life for persons with intellectual disabilities”, Hrvatska revija za rehabilitacijska istraživanja, Vol. 42 No. 2, p. 101-112.
Slavinić, I. (2008). Matrimonial unions of persons with intellectual disabilities, undergraduate dissertation, Zagreb: Edukacijsko-rehabilitacijski fakultet.