Aphasia. Culture to become human again.

©drawing made by an aphasic patient, as part of a project that saw the creation of a cartoon
to explain the condition of aphasic people, in collaboration with the National Cinema Museum of Turin

Aphasia is a language disorder that normally occurs following a brain injury caused by a cerebral vascular accident (stroke) and results in the loss of language and speech: the communication potential of the person suffering from the disorder is permanently modified.

The injury sometimes causes a reduction in the ability to understand, in other cases a decline in the ability to speak, or both. The left brain, which is in charge of processing language, is affected by the injury, and different disorders appear depending on whether the Broca area (problems in producing language) or the Wernicke area (in charge of understanding) has been damaged. There are two main types of aphasia: fluent aphasia (fluent speech, but difficulties in understanding) and non-fluent aphasia (difficulties in speaking and limited vocabulary, but intact understanding).

The variables in which the symptoms can present themselves and the complexity of the disorders mean that aphasia causes serious communication problems and often the people who are affected suffer a decline in their relationships. This leads them to isolate themselves from their social circles as they tend to withdraw.

Almost all the clinical studies conducted on this disorder highlight the difficulty faced by aphasic patients in rebuilding the relationships prior having a stroke. There is a tendency to move more and more towards enhancing the levels of activity and participation of patients with aphasia, in an attempt to stimulate the abilities, they have left.

The Carlo Moro Foundation has been taking care of people with aphasia for more than fifteen years and one of its main goals is to run social inclusion projects that improve the quality of life.

The projects that have been most successful in the long-term are those related to art and cultural activities. The starting point was the creation of moments of intelligent entertainment that aimed to enhance the remaining abilities of those with aphasia and that created a neutral space to be shared with caregivers or friends where they could go back to being a “person” and not feel like a “patient”, a fertile ground for cultivating meaningful emotions. The relationship with art has been built on several levels to ensure that all people with aphasia can get the maximum use out of it.

An initial approach was the constant offer of monthly guided tours to exhibitions or museums. Constant preparatory work is carried out with the cultural bodies that will host the events, including a survey to identify an accessible tour for a sustainable length of time that also guarantees frequent sessions, and a preliminary training meeting to prepare the person that will accompany the tour or lead the workshop, in order to understand the essential features of this disability and to recommend the most effective way to communicate. These preparations also raise and spread awareness throughout the region, which in turn paves the way to inclusive planning.

“Being in the midst of beauty makes you feel good” this is the motto of cultural visits. All the questionnaires distributed at the end of each museum tour and each museum workshop to evaluate the soft skills and levels of satisfaction, show that cultural projects are generators of wellbeing, empowerment and increased self-esteem. Patients who have never set foot in a modern or contemporary art gallery before find themselves experimenting with workshops and creative activities and this gives them an active image of themselves, of people still capable of acting, exploring and discovering the world.

Every act of inclusion is generative: for the museum, for the educational services involved in their design, for the region.

Other projects are then created out of awareness and encounters, and they are becoming increasingly ambitious and creative, with the participation of smaller groups that work together for months on the same goals.

Museum guides written by people with aphasia have been created to tell how museums generate emotions in them and how they can become part of their personal emotional life; these guides have been presented at public events honoring the work of their aphasic authors and have then been left at museum ticket counters for distribution.

Short films have been made, with the involvement of aphasic people even in the writing of the script, so that their point of view can be told to the fullest extent possible; a magic lantern show has also been staged, where the glass sides of the lanterns were drawings made by a group of patients.

A multi-year project focusing on multimedia communication has led to the creation of an historical documentary on the city of Turin and its legends and quirks, involving the work group in every aspect of the project: from the preliminary historical research and writing of the texts to the filming and voice-overs.

The theater, with the creation of a theater company (Babel Theater) mixed with senior aphasic actors and junior actors studying nursing or speech therapy, is an artistic tool that enables difficulties and hopes to be brought to the stage, sublimating and objectifying them. They have put on four shows, which have been presented at festivals with a good level of audience participation and a significant impact on the life of the senior actors, who were able to show that they could learn new skills.

Art teaches us that we can overcome our limits, that we have no limits, it helps our thoughts to become reality and shows us that we can always work on ourselves. It makes us more capable and also more able to communicate.

Art is a health resource.

Catterina Seia Member of the IBSA Foundation Advisory Board; Founder of the CCW Cultural Welfare Center; Co-Founder and Vice-President of the Fitzcarraldo Foundation; Vice-President of the “Medicina a Misura di Donna” Foundation.

Valentina Borsella Head of Cultural Projects for the Carlo Molo Foundation.