Affirmation
Art channelChallenges of Life – on Sexuality of People with Intellectual Disability
I liked that it was about love and sex. (Aurelia, one of the participants of the Occupational Therapy Workshop at Polish Association For Persons with Intellectual Disability, took part in testing of the Challenges of Life game)
Sexuality is not a choice, but a natural part of every human being. It should therefore be considered a human right, regardless of sex, age, psychosexual orientation, or disability. In this regard, no disability (physical, intellectual, etc.) can eliminate a person’s right to sexuality. Full and equal enjoyment of fundamental human rights and freedoms is provided by the UN Convention of Rights of Persons with Disabilities that was adopted by the United Nations General Assembly in 2006, and ratified by Poland in 2012. According to the provisions of this international legal act, every person (including people with intellectual disability) has a right to sex education, which supports the development of sexuality.
The perception of people with intellectual disability has been changing considerably. Significant changes in the definition of the state of intellectual disability have occurred over the last 70 years. There has been a shift from a static view, associated with irreversibility and stability of the intellectual disability, to a dynamic view, focused on the individual’s developmental abilities. The most up-to-date definition of intellectual disability is provided by the American Association on Intellectual and Developmental Disabilities. According to the Association, intellectual disability is “a disability characterized by significant limitations in both intellectual functioning and in adaptive behaviour, which covers many everyday social and practical skills. This disability originates before the age of 18”1. That is the theoretical point of view, whereas the social perception of people with intellectual disability is based on myths and stereotypes. This applies especially to the area of sexuality.
Stereotypes about this area of intellectually disabled people’s life range from infantilization, consisting in treating such people as children and assuming they are asexual, to demonization that involves pointing out to their hypersexuality and lack of ability to control their own sexual needs. Meanwhile, current research shows that the biological and sexual development of people with intellectual disability does not differ considerably from the development of people falling into the intellectual “norm”. The greatest difficulties stem from the lack of sex education in this group.
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The attitudes of parents and carers, specialists (including doctors), as well as the society in general towards the intellectually disabled people’s sexuality are usually pejorative (ignoring, stifling, limiting, denying). Positive attitudes, such as tolerance or acceptance, are much less frequent. This has a direct impact on the actions taken towards people with intellectual disability by those in their closest environment, and subsequently on the creation of barriers in the enjoyment of sexual rights by this group. Among the barriers defined by the people with intellectual disability themselves there are: lack of the possibility for an open conversation about sexuality with their parents or carers, lack of privacy, restrictive institutional regulations, overprotectiveness, and lack of sex education. This situation, as well as providing intellectually disabled people with too much institutional protection throughout their entire lives, has noticeable negative consequences.
The disabled’s low awareness of their own sexuality and sexual rights, as well as the fact that this issue is ignored in education, have direct consequences and pose threats related to health care (infection with sexually transmitted diseases), unwanted pregnancy, or sexual violence, which is much more frequent among people with intellectual disability. The analyses concerning the frequency of sexual violence among the intellectually disabled show that this type of violence was 3 to 10 times more frequent than among fully abled people. However, only 20% of such cases are detected. The statistics clearly point to the need for more research as well as practical measures concerning sexuality and sex education of people with intellectual disability.
“Sex education, when carried out appropriately, can support comprehensive development, while gaining knowledge and skills can help decrease or eliminate the likelihood of negative experiences. People taking part in sex education become more aware of their own sexuality and, as a consequence, they express it in a socially acceptable way”2.
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However, bringing up the issues concerning sexuality is often avoided in special-needs schools, since it is not clearly required by the core curriculum3. There is no sex education in the core curriculum of general education for a vocational school. Such schools teach the content not dividing it into specific school subjects, but as a part of remedial and educational classes in separate modules, e.g. “I – on building one’s own identity”, “I will be an adult”. These modules give the possibility to introduce some elements of sex education, but, in fact, it is not often the practice. One of the reasons is the fact that sexuality in people with intellectual disability still remains a social taboo, hard to break even for the special education teachers. Another reason is the lack of the didactical tools supporting teachers in carrying out such classes. Searching for the tools for the development of social skills of the adults with intellectual disability, especially helping them create an awareness of their own sexuality, satisfying sexual needs and fulfilling roles typical for the adulthood, has given rise to the creation of a board game Challenges of Life, created as a part of the grant “Human scale innovations – supporting the development of micro-innovations in care services for the dependent people” Operational Programme Knowledge Education Development 2014-2020, co-financed by the European Social Fund4.
Sample questions from the game:
How should a woman take care of herself during her menstrual period?
In what situations can you hug someone?
How to take care of one’s personal hygiene?
Is being a man hard?
How does a person in love feel?
Is spying on other people allowed?
If a woman does not have a menstrual period, does it mean she is pregnant?
Who is allowed to touch your genitals?
How can a couple in love spend free time?
What are the symptoms of pregnancy?
“Challenges of life” is a universal educational board game concerning human sexuality in the broadest sense. It consists of 376 cards with questions in seven thematic categories: sexual identity, sexual awareness, sexual behaviour, sexual relation, emotional relation, sexual violence, parenthood. The questions are open-ended, there are no wrong answers, but the game and the accompanying discussion are led by a mentor – it is him or her who has to present objective and scientific knowledge and take care of the psychological comfort of all the players.
The game was fully adjusted to the needs and abilities of people with intellectual disability (layout, possible strategies chosen by the players, abbreviated version of questions). However, practice has shown that the need to bring up subjects concerning one’s sexuality and to update one’s knowledge about it remains unfulfilled among other groups as well – “Challenges of Life” is highly popular for example during the board games festivals. Applying the game’s formula, which asks questions and faces the players with tasks, definitely makes it easier to bring up the subject with which we are not fully comfortable on a daily basis.
The game was created by 6 innovators from Torun, but specialists (sex therapist, board games expert, graphic designer, and, most importantly, students from the local special-needs school performing the role of experts) were also involved. To be able to understand the experience of people with disabilities and respond to their needs, they themselves have to be the main source of knowledge, not their delegates, such as parents, carers, or specialists. People with intellectual disability are able to define what is important to them concerning their sexuality, and only such direct information will give the possibility of a well-adjusted support.
The game marks only the beginning of an undoubtedly difficult path to changes in social attitudes, stereotypes and harmful myths. Everything, however, begins with the first step, and in this case – with the first roll of the dice.
1 Schalock R. L. i in. (2010). Intellectual Disability. Definition, Classification, and Systems of Supports. 11th Edition. Washington: AAIDD.
2 Lewko A. (2016). Edukacja seksualna jako element wspierania rozwoju osób z niepełnosprawnością intelektualną. Forum Pedagogiczne, 1, p. 327-337.
3 Podstawa Programowa Kształcenia Ogólnego dla Szkół Specjalnych Przysposabiających do Pracy dla Uczniów z Niepełnosprawnością Intelektualną w Stopniu Umiarkowanym i Znacznym oraz dla Uczniów z Niepełnosprawnościami Sprzężonymi (Attachment no. 5, Journal of Laws, item 356).
4 More information on the website: https://www.innowacjespoleczne.org.pl/innowacja/wyzwania-zycia/
The game “Challenges of Life”could be implemented thanks to the financial support received in the national project “Innovations on human scale – support for the development of micro-innovations in the area of care services for dependent persons” Operational Programme Knowledge Education Development 2014-2020, co-financed by the European Social Fund
