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Summary: AIA Zoom Meeting on Aphasia Awareness (Friday 13th September 2024)
Participants: Jernej Sluga, Damir Muftic, Marina Charala, Raili Vaidlo, Claire Bennington, Hanka Mayhew, Javier Gil, Lori Buchanan, Davide Crovetti, Jean-Marie Annoni, Maia from Estonia

  • Challenges of Aphasia: Participants discussed the struggles faced by people with aphasia, including communication difficulties, fatigue, and the emotional toll of being misunderstood due to the condition’s “invisibility.” (Well explained by Damir, Javier Jernej, and Hanka)
  • Need for Public Awareness: There is a strong need to raise public awareness through sustained educational campaigns, as brief attention from celebrity involvement, like Bruce Willis’s case, fades quickly.
  • Family and Support Networks: Emphasis was placed on the importance of family and close friends understanding aphasia to provide effective support, which is often overlooked in awareness efforts.
  • Global and Local Efforts: Lori shared her efforts in Canada, where they’ve made an entire town aphasia friendly. This includes training bus drivers, hairdressers, and other businesses to communicate effectively with people who have aphasia. Similar programs are expanding to countries like Japan and Switzerland. Davide and all suggested a coordinated global Aphasia Awareness Day in June. Raili presented a plan in Estonia making emergency calls more accessible for people with aphasia, with suggestions like video calls or registered caller alerts. Javier shared his research on the social and financial effects of aphasia and how he continues to advocate for awareness through conferences and his psychotherapy clinic. Claire shared the Australian experience of the Aphasia Awareness Month in June by sharing tips and encouraging members to spread aphasia awareness through initiatives like “Wednesday Without Words,”.
  • Emergency Call Accessibility: Participants highlighted the need to improve emergency services for people with aphasia, with Estonia leading efforts to make emergency calls accessible through video options.
  • Future Discussions: The next meeting will focus on the psychological and intimacy challenges faced by people with aphasia, continuing the effort to raise awareness and improve quality of life. At the General Assembly of AIA (Aphasia International Association) in Ljubljana, planned for November 9th. We will propose the establishment of a world Aphasia Day (June : 7th ? 9th? 28th ?)

Jean-Marie Annoni, 18. 09. 2024.