Childhood illnesses

Technology is the voice of Clara, a girl with Angelman syndrome

Clara can't speak, but her smile says it all. The 4-year-old was diagnosed with Angelman syndrome a few months after birth and, because of this, one of the barriers that she faces every day is the absence of speech. However, thanks to technology, he has regained his voice, or rather, the ability to communicate with his family. And, although new technologies often separate or isolate us, they can also help improve the lives of people who have a disability and, of course, also those of their families.

'Clara is a very happy, communicative and smiling girl. In short, happy. Although he also has, like all people, a bad temper when he is not allowed to do what he wants. But, among all the characteristics of my daughter, her self-determination stands out, she is clear about what she wants, what she likes, 'says Ruth, Clara's mother.

Shortly after she was born, Clara's parents began suspect that Clara's evolutionary development was not like that of most of the children, as was that of his other three children. It took Clara longer than usual to be able to turn around, sit up, and walk. But what most caught Ruth's attention was that the girl did not point, clap her hands or imitate simple gestures. For this reason, when she was 15 months old, they requested the evaluation of a pediatric neurologist who, after a genetic analysis, diagnosed that Clara had Angelman Syndrome.

According to the article 'Rapid diagnosis of Prader-Willi and Angelman syndrome by PCR methylation test', proposed by the Anales Españoles de Pediatría (AEPED) written by researchers such as C. Huertas Rivas and A. Barabash Bustelo, among others , explain what Angelman syndrome is a neurogenetic disease with an incidence of between 1 in 20,000 newborn babies. Among the most frequent symptoms we find the absence of language, seizures, dyspraxia or severe mental retardation.

In addition, many of the children diagnosed with Angelman syndrome face motor barriers, that is, to move, but also sensory barriers. This makes, as Ruth herself explains, Clara's day-to-day life requires much more effort than for the rest of the children of the same age. The simple act of moving the way you want to do what you want is a challenge in which you have to invest a lot of energy that, logically, you have to stop putting in other tasks. '

However, one of the biggest barriers Clara and her family face is the absence of speech. And it is that, although Clara understands absolutely everything they say to her, she cannot speak. 'Can you imagine that they would take your voice away just for one day? How would you communicate? ', Her mother invites us to reflect. The absence of speech influences each of your day-to-day activities, in each minute of your life.

The family, who accompany Clara every day in her different therapy sessions, have found in technology, and all the possibilities that it offers, an ally to help the little girl overcome this barrier. Technology has become an impulse and an engine to improve communication between all members of the family.

Ruth refuses to think that her daughter is defined solely as a girl with Angelman syndrome, because Clara is much more than that. 'People with functional diversity have classically been stripped of identity, from the moment they stop being Clara or Pepe or Martina to be a diagnosis and it is frequent that those around them make all the decisions without counting on them. We believe in respect for the individuality and identity of our daughter and we want to accompany her in her formation process as a person, so that she can become what she wants and can, like everyone else. '

And technology here has an essential role. And, as Ruth herself points out, we all have the right to communicate. The right to communication is included in the Declaration of Rights in Communication, developed in 1992 by National Communication Needs of Persons with Severe Disabilities (ASHA).

'The fact that Clara cannot speak does not mean that she has nothing to say and that is why we consider it essential to provide them with tools to exercise their right to communicate. ' And, from the moment they have opted for augmentative and alternative communication (AAC: those strategies that allow speechless people to communicate), Clara's progress has been impressive.

They use a system called Proloquo2Go that allows Clara to communicate based on visual language. This tool offers different symbols that the family points out and names aloud to communicate with the little one. Little by little, Clara has given meaning to each one of them and uses them to 'talk' with her loved ones.

'Technology is our daughter's voice. Clara began by making requests and calling us, but little by little she is being able to comment on some things such as emotional states or what she has eaten at school (...) Technology has become an opening to the world, in the possibility of communicating her thoughts and, to influence their existence and that of others. It is, in short, independence and self-determination. '

Technology has become a hope for Clara and her family, an ally, an engine for development, a commitment to the future (but also to the present) for everyone.

The question, although difficult to face, we had to ask Ruth: What would you need for Clara's future to be better? And, although there are certainly many things she would like to ask for, Ruth asks us for a reflection, a change that we must all make, and that is in our power. As always, the key is to put ourselves in the shoes of the other.

'We need a better, more generous, inclusive, open and flexible world. In my opinion, we are part of a tremendously rigid system that does not accept the differentregardless of the origin of said difference. There are many barriers that we have encountered since Clara's birth, and that she is only four years old. But we are aware that we have many more.

The worst of all these barriers is the look of limitation. Many of the people who approach Clara do so out of condolence, compassion and look at her assuming her disability. We work every day to try to make the world a more inclusive place. The difference scares us, because it puts us in front of our own vulnerability.

(...) It is very important that we change the model with which we approach disability, that we go from the medical model that tries to 'normalize' to the different one, focused on the deficit, on the limitation, to the social model that reveals the barriers that people with functional diversity have to deal with.

For this, it is necessary that diversity reaches our schools and that from the educational space all the necessary supports are provided so that people with functional diversity can develop in equity and equal opportunities than their peers with typical development. I would like to end with a few words from Inés Enciso, Artistic Director and Cultural Manager: who do you want to be the one who puts up the barrier or the one who builds the ramp? '

We are left with this final reflection and with Clara's smile, that is what we are left with.

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