by Nicoletta Marconi.
If you’ve never met a deafblind person or someone with multiple disabilities, perhaps you may have some unanswered questions: are deafblind people completely deaf and blind? How do they care for themselves? How do they spend their free time? How do they play? How do they communicate?
When talking about deafblind people, we must think about a wide range of characteristics. Deafblind people may be completely deaf and blind or have a residual trace of one of their two senses. They may have lost their sight and hearing after acquiring language, they may have received hearing aids at an early age and have therefore partially recovered their hearing. They may be able to see shapes, lights, and shadows, or have a residual ability to discriminate colors and images. Certainly, deafblindness must be considered a single disability, distinct from the simple sum of visual and hearing impairment, because dual disability has a different impact on the development of the personality and social relationships.
So, if sight and hearing are absent, or only partially present, and if cognitive or motor skills are also suboptimal, what tools does a child have at his disposal to find his place in the world?
First, they must learn how they can maximize the remaining intact sensory channels, primarily touch, but also smell and taste. Everything around them has a smell, a consistency, a texture, and so reality gradually becomes populated with objects, people, and materials that differentiate and become recognizable by the sensory aspects that characterize them.
A fundamental role is played by the educator, whose primary task must be to provide a safe haven, a warm place within the educational relationship, a starting point from which to depart and return to acquire knowledge, skills, independence, and self-determination. The entire educational relationship turns around the word “trust”. The educational relationship is always a relationship of trust; the child must learn to trust a person who, in most cases, is not a family member, whose manner of approach or smell is recognized only by the child, and the educator must have infinite faith in the child’s abilities.
In fact, people with deafblindness and, above all, multiple psychosensory disabilities face seemingly insurmountable challenges every day, such as carrying out tasks independently, correctly perceiving and using their environment, learning new skills, and, above all, communicating.
Learning to express own needs, desires, and, above all, own disagreements, thus becomes the greatest of challenges, the primary aim of growth.
Children with multiple disabilities must invest a great amount of energy and commitment into learning to use that magical and extraordinary tool that is communication; any system, method, or language can be effective if it allows them to relate, understand, and be understood.
Each system has an own value only if it is “significant”; a spontaneous gesture, a real object, a miniature model, or, where a visual residue is present, an image. Any object, symbol, or behavior to which a meaning is associated becomes a signifier of a reality: an activity, an environment, a person, a food, a place, an emotion.
Then, communication takes on the magical power of bringing the deafblind or multiply disabled child out of isolation and silence, projecting him into a shared reality, in which he himself becomes the protagonist in the expression of his own choices, decisions, and desires.
For the deafblind person, as for everyone else, being able to communicate is a vital requirement to avoid feeling alone, isolated, self-absorbed, immersed in a world of silence, and delegating to others the power to speak on your behalf.
When people with deafblindness and multiple disabilities acquire communication skills, they become masters of their own lives. They gradually begin to express their needs and, above all, their will. Spontaneous gestures, where there are the necessary prerequisites, can be supplemented and replaced by a sign from Sign Language. Deafblind people, who for obvious reasons cannot perceive signs visually, learn to use Tactile Sign Language, where the sign, which deaf people perceive visually, is replaced by a sign perceived by the hands of the deafblind interlocutor. The same sign that is seen and looked at by deaf people is then touched and explored by the hands of the deafblind person. The interpreter signs into the deafblind person’s hands, positioned to receive it.
Deafblind people who have learned to read and write can also become skilled at communicating through the Malossi system, in which the listener’s left hand becomes a keyboard, where each point of the fingers corresponds to a letter of the alphabet and on which entire dialogues can be typed.
In this way, day after day, deafblind children become women and men capable of expressing their needs, emotions, and desires. With the support of family members, educators, and technology, life’s challenges only seemingly become insurmountable, because no child is denied the opportunity to learn, regardless of their starting conditions. Disability, even when characterized by the need for intensive support, cannot represent a constraint, a point of arrival, or the absence of educational prospects, but rather must be understood as the premise, the starting point from which to embark on a long journey of continuous growth.