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Health and wellness

Health and wellness

Games without secrets: The App which teaches youngsters with intellectual disabilities about sexuality

A study of this sector of the population by Ángela María Ruiz, Lilia Virginia García and Inés Elvira Restrepo, researchers at the Universidad de Rosario, enabled them to attain an indepth understanding of their reality and create a novel tool to prevent these children and youngsters from becoming the victims of abuse and ensure that their rights are respected.

  Photos: Leonardo Parra / Alberto Sierra
By Marisol Ortega Guerrero

September/2019

To fill the existing gap in the education, training and possession of safe and reliable information on the sexual and reproductive health of persons with intellectual disabilities, researchers at the School of Medicine and Health Sciences of the Universidad del Rosario created an App called Games without secrets, which is regarded as a risk-free educational tool which trains, orients and provides information about the dangers of abusing these youngsters.

After more than six years of work on this subject, based on two projects which led them to find imaginaries closely linked to stereotypes and taboos about youngsters with this disability, the tendency to treat them as children and the lack of a specialized counseling for them and their families, the researchers attained an in-depth knowledge of such problems and have proposed solutions to deal with them.

Now, as the result of the second project, they have come up with this prototype of a video-game, which, in addition to warnings (Careful!), includes information which helps such youngsters to learn how to act towards the threats. “This will probably allow them to discover such dangerous situations, drive them away and find the right path,” the professors say.

“The idea is to present them with the situations, so that they can assess and ponder them and make decisions, and the game will show them different contingencies and the possibilities for responding to them,” explains Lilia Virginia García, a physiotherapist and member of the Rehabilitation Sciences Group.

 
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In the opinion of Inés Elvira Restrepo, “we definitely have to start listening to the voices of the persons who are the subject of the study, who become subjects with rights.”

 

An inspiring project
 
In technical terms, the video-game is very well designed, with excellent avatars, due to the fact that it was constructed with the help of the same youngsters and their families, who provided feedback for the tools, characters and even the same scripts and language, so that it would be accessible and easy to play in the end.

It is so innovative that it has already won an international award, after it was submitted to the 8th Latin American Encounter of Academics of Physiotherapy and Kinesiology (VIII Encuentro Latinoamericano de Académicos en Fisioterapia y Kinesiología), in Puebla, Mexico, in October, 2018. “We won the second prize in the category of ´Formal Research´, which has been a very important encouragement and a motive to follow this path which we started on in 2013. In addition, we have approached some funding agencies to see if we can obtain resources in order to further develop the project,” explains Lilia Virginia García.
The App has been submitted to the “Grand Challenges Canada”, an organization, sponsored by the government of Canada, which finances initiatives which deal with challenges in the field of health and sexual and reproductive rights, and to the Promobilia Foundation of Sweden, which supports projects in those and other social fields.


Strategic alliances

The work of this research group and the development of the video-game have also been a novel and innovative form of tackling these subjects, since, as Ángela María Ruiz, a gynecologist and director of the Clinical Research Group explains, “it arose as an interdisciplinary project between the Rehabilitation Sciences team; the Clinical Research Group, which is specifically devoted to sexual and reproductive health, and the Transiciones Crecer [Transitions in Growth] Corporation, with the idea of looking at the project from different angles.”
 
They were joined by some key alliances. The Vivelab network of laboratories provided crucial technological support, since it has the modern equipment and human talent required for the development of Apps such as this one.

“We definitely have to start listening to the voices of the persons who are the subjects of the study, who become subjects with rights,” explains Inés Elvira Restrepo, a pediatric intensivist, professor of pediatrics and disabilities, and leader of the Opciones y Apoyos para la Transición a la Vida Adulta group, [Options and Support for the Transition to Adult Life], which works with youngsters with intellectual disabilities.

 
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“The game will show them different contingencies and several possibilities for responding to them,” explains Lilia Virginia García.

 

“All of this has enabled us to honor the basic principle of ´Nothing about Us, without Us´, which has also been a landmark in the transformation of programs for persons with disabilities, which now work with them, the people who most know about their rights and needs and therefore, make big contributions,” Restrepo adds.

An in-depth look at the problems

In 2013, the gynecologist and epidemiologist Dr. Ángela María Ruiz; the pediatric intensivist Dr. Inés Elvira Restrepo; and the physiotherapist Lilia Virginia García began to investigate the subject of the sexual and reproductive health of persons with intellectual disabilities. They also participated in different encounters with collectives which involved that sector of the population and those who are concerned with them, like judges, presidents of ethics committees and tribunals and medical doctors with different specializations, like pediatricians and gynecologists, among others.

They also organized 20 focus groups and found that there were not only imaginaries closely linked to stereotypes but there was also a complete absence of education which went beyond the teaching of anatomy, physiology and the nature of the male and female reproductive organs.

As Restrepo explains, an interesting part of this effort was an analysis of three key articles in the UN Convention on the Rights of Persons with Disabilities (2006), which Colombia ratified (May, 2011), along with 99 other States: Article 10, on the right to life; article 12, on the right of such persons to be equal before the Law; and article 23, on Sexual and Reproductive Rights, related to the right to form a family.

In general, they found serious gaps, myths, imaginaries and fears to do with subjects like the relationship of couples and pregnancy in this collective, their right as subjects of law compared with their capacity to responsibly exercise them and the possibility of transferring that decision to a third party, through the legal resource known as interdiction. The analysis of all these subjects led to the conclusions the first project reached.

Ruiz highlights the support of another ally, Professor Carlos Maldonado, a philosopher, with a doctorate in the sciences of complexity. “On the basis of these sciences of complexity, which acknowledge diversity and difference, we set out to understand the phenomenon of reproduction and the sexual and reproductive rights of persons with disabilities, which in fact is difficult to explain and has some highly varied logics. And that was the second project we did.”

The result was to organize another project, entitled A strategy for training persons with intellectual disabilities in sexuality and reproductive rights: An educational proposal for self-determination, which ended with the “Games without secrets” App, a prototype of the video-game which is currently being developed and whose intellectual property rights are being secured with the support of the university.

In this second project, “the voice of the youngsters and their families seemed very powerful to us: It enabled us to discover this void which existed in sexual education, and deal with a central point of the first one, and that was how to destroy these myths and stereotypes about the sexuality of the youngsters. Thus, we oriented the second project towards the formulation of a number of strategies for education in sexuality and sexual reproductive rights,” García explains.

A lack of communication

There is a marked lack of knowledge about subjects like the sexual and reproductive health of certain segments of the population, which is aggravated by sexual abuse, a problem which is regarded as a public health matter. That is why the researchers of the Universidad del Rosario have not only analyzed the subject in depth, but now have a digital App, Games without secrets, as a proposal for a new way of educating people, in an approachable and likeable language.

 
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“We were surprised to see how many mothers conceal and hide the abuse of their own daughters by the man they are living with, because they are afraid to lose the person who supports them,” Ángela María Ruiz remarks.

 

In the opinion of the pediatric intensivist Inés Elvira Restrepo, “a key point in the prevention of abuse is to avoid being unaware of the information about it, because it is precisely that which makes us much more vulnerable.” The idea is to provide clear and precise information about each situation and facilitate access to education.

The professors also believe that it is important to strengthen the State´s policies in this field, because cases of abuse are characterized by some very complex intra-family dynamics.

“In fact, as a result of this latest project, we were surprised to see how many mothers conceal and hide the abuse of their own daughters by the man they are living with, because they are afraid to lose the person who supports them. These cultural and economic tangles are very complex, and are not necessarily resolved by resorting to the law,” says the gynecologist and epidemiologist Ángela María Ruiz.

The video-game is meant to provide answers to these concerns, because it is accompanied by “guides, sets of instructions which also seek to educate the family, as a fundamental part of the situation, because it is not only the game which is going to educate us, it has to be the family as well, by providing them with suitable alternatives and strategies of communication,” adds Ruiz.



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The researchers honor the basic principle of 'Nothing about us, without us', which has been a landmark in the transformation of programs for persons with disabilities, which used to work for them and now work with them.

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