Sexuality and disability should not be a taboo

9 January 2019 // IF has launched a questionnaire on sexuality and body-awareness of people with Spina Bifida and Hydrocephalus (SBH).

The questionnaire was created by a group of young people with SBH and coordinated by IF. The aim of the questionnaire is to build up a solid basis of evidence on what is important for young people with SBH about their sexuality and body awareness in order to continue working on the topic.

There is an ingrained belief that persons with disabilities are unable to be active participants in their own lives, that they have to be protected, that they could not or even should not become parents. This mindset results in many prejudices and misconceptions regarding sexuality of persons with disabilities (persons with disabilities are asexual, they cannot have sex, they cannot give birth to healthy children…). To remove this stigma, collection of data on sexuality would enable definition of strategies which would help us to better address problems young people with SBH face. Sexuality of persons with disabilities shouldn’t be a taboo, and must be discussed by young people, doctors, families and the whole society in order to break taboos and encourage youth with SBH to freely speak about their concerns.

In a vulnerable period like the teenage years, young persons with SBH can face more problems with self-acceptance which can be related to their condition (body appearance, continence management, use of mobility aids etc.), and inadequate answers and lack of information on this topic can have many consequences in their adult life. Therefore, it is extremely important to understand all problems, dilemmas and barriers which can affect the sexual life of persons with SBH and find a way to enable them to live quality lives, get information and make choices of their own.

The questionnaire will take around 15 minutes to complete and it is available in ENGLISH, FRENCH, ITALIAN, SPANISH, TURKISH, MONTENEGRIN and FLEMISH.