I am in Spain in a town by the Balearic Sea. Not for recreation but for intense work on a new core set for deafblindness in the International Classification of Function (ICF). There’s a beach outside, a waterslide too, and even a roller coaster. But we are inside focused on deciding and debating what features of deafblindness or dual sensory impairment are the most important to include in this substation and important resource.
We are a mixture of people with lived experience, professionals, practitioners, supports and carers from all over the world: Australia, New Zealand, Argentina, Egypt, India, the Nordic region, the USA and the UK to name some. All seven continents had representatives in the consensus group.
Professor Walter Wittich is leading the two days of deliberations; we have three minutes per code under consideration. We have voting paddles with IN and OUT. I am grateful I have started learning braille (I have only learned A to J, but since IN starts with I am able to recognise it).
So, what kinds of features of deafblindness are making the cut? There is a widespread agreement that code e450 is IN.
e450 – Individual attitudes of health professionals – General or specific opinions and beliefs of health professionals about the person or other matters, (e.g. social, political and economic issues), that influence individual behaviour and actions.
The importance of the lived experience voices is shown by the reminder that living with deafblindness is not binary: we are not just service recipients, we are service providers, and we are not just the ones that need communication and accessibility, we are providing this too.
Too much of our lives are spent educating others on the way we communicate and our accessibility needs, so the code following was an IN as well.
d6602 – Assisting others in communication – Assisting household members and others with their communication, such as by helping with speaking, writing or reading.
This for me was an important win as it recognises our role in assisting others, for without this we wouldn’t have any communication partners.
The last code of the first day that was a definitive IN as well is arguably the most important.
Political life and citizenship – Engaging in the social, political, governmental life of a citizen, having legal status as a citizen and enjoying the rights, protections, privileges and duties associated with that role, such as the right to vote and run for political office, to form political associations, enjoying the rights and freedoms associated with citizenship (e.g. the rights of freedom of speech, association, religion, protections against unreasonable search and seizure, the right to counsel, to a trial and other legal rights and protections against discrimination); having legal standing as a citizen.
On day 2, we have over fifty codes to discuss and decide on. They covered a wide range of body structures and some inspired vigorous debate among the group, consensus was not always obtained. But we worked and worked at them and even, (surprisingly given the number) finished early!
What happens next: draft first version; then refining/reflecting; producing another version that incorporates ongoing feedback and commentary; creation of a plain language version; then interpret this into sign language (American sign language, French sign language and international sign language). Work will also begin in November on a brief core set. And then in January it starts all over again for a children’s/paediatric version!
No wonder Walter is crying…..
In good news the draft first version of the deafblindness (and dual sensory impairment) core set is now available at:
Wittich, W., Dumassais, S., Jaiswal, A., Ogedengbe, T. O., Lopez, R., & Granberg, S. (2024, October 9). The ICF Core Sets for Deafblindness: Version 1. https://doi.org/10.17605/OSF.IO/A942K
Thank you to Senses WA and Deaf Connect for supporting Annmaree’s travel, and to the University of Sydney for support for Suzanne to accompany and support (and this was much needed, a herculean task as accessibility was problematic).
Dr Annmaree Watharow
Lived Experience Research Fellow
University of Sydney