When the familiar means of communication disappears — aphasia and communication about sexuality

Aphasia refers to a linguistic disorder in adulthood that is usually the result of a cerebrovascular disorder or external trauma to the brain. In it, areas that focus on the linguistic functions of the brain are damaged as a result of, for example, a cerebral infarction, cerebral haemorrhage, or brain injury. Disorders of linguistic function are also possible in other neurological diseases.

Speech is a privilege for people. It is a way to interact, to express thoughts and feelings, but also a way to remember, dream and fantasize. Speech (both internal and external) is strongly related to our identity and through it brings out to other people who we are.

If speech is lost in adulthood, finding new ways to communicate can be surprisingly difficult. Aphasia can cause mood swings, exclusion, and withdrawal, as well as fear of social interactions. Sexuality as an umbrella concept is an already identified area today and sexuality is being discussed more openly nowadays. About sexuality and sex is being encouraged to talk about more and more. Yet often in conversations, we forget how to secure communication for those who have no speech or words whereby things could be revealed.

Brain damage has been found to affect sexuality and sexual function in many ways and there are several studies on both stroke and brain injury relating to sexuality. However, there is less research data on the effects of aphasia on sexuality. This in itself can be partly explained by the challenges of data collection if the interviewees or respondents have linguistic challenges. This affects how often we forget the effects of this symptom picture when discussing sexuality.

The advice often given by sexologists is that the most important thing about sex is talking about sex. A conversation about hopes, desires, fantasies. Intimacy and connecting with a partner or partners often start with talk. People suffering from aphasia report that aphasia makes it difficult to initiate sexual activity and an important element of the feeling of intimacy, i.e., talking about sex and sexuality, were missing from the interaction with the partner. That is, the sexual function itself was not even seen as important as communication about it.

Aids for communication

Aids that support and replace speech (AAC) are used and directed also to people who will get ill at their adulthood. Speech therapy plays an important role in the rehabilitation of people suffering aphasia and alternative means of communication are often built to cope with everyday life. Various communication folders and electronic communication programs on tablets are part of the lives of many people. Communicating through images is an easy and versatile method of communication.

However, it is important to note that is sexuality and sex visible as part of image communication? Whether images of sex and sexuality have been provided as aid for communication?

Terapiaperhonen and SelkoSeks conducted an online survey on the topic: the sexuality of a person needing support in communication and talking about sexuality. The survey was aimed at those who need support in communication, their relatives and those who work with them.

However, responses revealed that images related to sexuality and sex are not available and are not available in aids.

” Many communication aids support well in other areas of life but may be deficient in content in terms of sexuality. Incomplete content may be in terms of vocabulary or pictures about sex and sexuality.”

” There is no vocabulary or illustration or symbols on the subjects in the tools of communication aid.”

” There is not enough content of the aids or if there is, then they are not allowed to be put in the contents.”

” I have come across situations where sexual-related imagery, for example, is not available to support the discussion. Alternatively, the images may exist, for example, in the communication folder, but the person does not use them because they are not familiar to him.”

Worth noting is that both rehabilitators and clients hoped that healthcare- and rehabilitation professionals would be the first ones who would start the conversations. In many studies people recovering from a cerebrovascular accident or brain injury sought help from professionals to deal with sexuality and more information on the subject. It is clear that professionals have a responsibility to help people communicate on issues related to sexuality as well.

The right to communication belongs to everyone

The right to communicate on matters related to sex and sexuality belongs to everyone. Therefore, the alternative means of communication should also provide materials on this topic. We want to provide an opportunity for everyone to communicate and that is why we created a picture bank related to health, anatomy, gender, orientation, sexuality, and sex. In SelkoSeks´s picture bank, you can easily find images that can be used as part of a communication tool or image communication.

If you need more information or support, we will be happy to help. We also offer training services related to the topic.

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