It’s a part of life

Dictio7687e5ca-d310-4824-90cf-d50cb79c490anaries, guides and manuals tend to have a very brief shelf life, as if the words in them were uncomfortable being confined to the page. And this is why I am so pleased about the 2nd edition of “It’s a Part of Life: Sexuality education and disability”, being launched late in December by the Sex Education Programme of Uruguay. And it makes me think about the continued relevance of the guide, not so much in terms of what I wrote in it, but rather in terms of its basic aim, one that remains very much an unfinished task: we need to talk more about sexuality and disability.

The origins of this book date back to 2011, when I was invited to head up a research project to explore the sexuality-related knowledge, questions and needs of children and adolescents enrolled in special education schools in Uruguay. Over the course of 12 months, we interviewed educators, families and the children and adolescents themselves to identify the barriers to access to information, as well as to learn more about the experience in schools and homes around the subject.

The main finding of this research was merely a confirmation of what we already expected: children and adolescents with disabilities have less access to information on sexuality than those without a disability – in terms of both the “biological” aspects of sexuality as well as the vast territory of feelings and desire, with all the mysteries and possibilities they entail. The wide gap in the information and knowledge available to children and adolescents with disabilities generally translates into fewer possibilities for self-expression, fewer “skills” (social, cognitive and relational) to question and explore the unknown through words, curiosity and fantasy, and greater vulnerability to abuse and manipulation.

Discovering that children and adolescents with disabilities have less information and fewer skills than their peers (siblings, cousins, classmates) simply because they have a disability was no surprise, but the research did allow us to give greater visibility and legitimacy to the need to ensure that sexuality education is inclusive and adapted to their needs. Above all, because we were also able to confirm that the reason for this gap is not related to the disabilities themselves (which obviously do not inhibit sexual desire), but rather to the taboos around disability and sexuality, and the rejection that stems from our difficulty in recognizing and accepting differences.

The direct consequence of this is that sexuality education is almost never offered to children and adolescents with disabilities. Nor are they included in educational campaigns or spaces where they could explore their feelings and engage in exchanges with other young people about the consequences of love or the value of pleasure in their lives.

The inhibitions and anxieties that result from this segregation and the taboos surrounding sexuality frequently emerge in clinical practice. Recently, a patient with a disability undergoing analysis with me anxiously expressed his need to talk about the sexual fantasies he believed to be perverse, because of the isolation and silence he faces.

The journey

“It’s a Part of Life” emerged as a direct consequence of the need to open up the closet of fears and prejudices where the sexuality of children and adolescents with disabilities is hidden. In our research, we had defined five or six questions that we used to gather opinions, but at the end of each focal group, it turned out that the parents had even more questions to ask, in addition to asking for recommendations, for references, or simply to be heard. Throughout those months, I noted down dozens of questions and descriptions of complex situations that these parents shared with me. Those notes and my experience as a psychoanalyst served as the basis for the text, which was subsequently enriched with valuable suggestions from Diego Rossi (coordinator of the Sex Education Programme) and Valeria Ramos (UNFPA). Then Denisse Torena contributed a series of wonderful illustrations for the book, which successfully communicated the message we wanted to get across: that sexuality and disability are not mutually exclusive terms, but rather a “part of life” – one that should not be denied and repressed, nor sugarcoated with sappy sentimentality, nor viewed as salacious or “risqué”. Through conversations and focal groups with over 100 moms and dads who have children with disabilities, I was able to hear questions that they normally felt too inhibited or uncomfortable to ask. And I was able to address them in writing, opening up a space for discussion and reflection.

Since then, the book has been on an incredible journey. It was published in Argentina by the Ministry of Education and requested by several other countries. It has been downloaded from the internet a record number of times, and has just been translated into English by UNICEF for global distribution. I have come across wonderful adaptations for its use by schools and NGOs throughout Latin America, such as illustrations done by hand (for example, in relief for adolescents with visual disabilities) and translations and notes in indigenous languages. But the one I found most moving was a copy of the book that someone showed me recently in Chile, on which a girl had changed the title to say: “It’s a part of my life”.

 

Translated by Lori Nordstrom lorinord@yahoo.ca