Melike Şahinol: Socio-Bio-Technical Entanglements in ALS Communication. A Posthuman Perspective

Datum
14. Mai 2024 

Zoom Lec­ture orga­nized by Rare Dis­ease Social Research Cen­ter (RDSRC) at the Insti­tute of Phi­los­o­phy and Soci­ol­o­gy in the Pol­ish Acad­e­my of Sci­ence, IFiS PAN (War­saw)

A sem­i­nar on Socio-Bio-Tech­ni­cal Entan­gle­ments in ALS Com­mu­ni­ca­tion: A Posthu­man Per­spec­tive in a series “Soci­ety and Tech­nolo­gies on Health and Illness”
Melike Şahi­nol (Inde­pen­dent Researcher)
May 14, 2024
3 PM CET
Orga­niz­ers: Rare Dis­ease Social Research Cen­ter, IFiS PAN
On Zoom: https://zoom.us/j/95315222190?pwd=UXB1NVNTMnlzYkhSL2RDWnpScThkZz09

Abstract:
In explor­ing the inte­gra­tion of brain-com­put­er inter­faces (BCIs) and aug­men­ta­tive and alter­na­tive com­mu­ni­ca­tion (AAC) tech­nolo­gies for patients with amy­otroph­ic lat­er­al scle­ro­sis (ALS), this pre­sen­ta­tion adopts a posthu­man per­spec­tive informed by the prin­ci­ples of Crip Techno­science. The frame­work chal­lenges the tra­di­tion­al view of dis­abil­i­ty and pro­pos­es a shift in focus from deficits to a more nuanced under­stand­ing of the inter­play between an individual’s abil­i­ties and their socio-(bio)-technical envi­ron­ment. Based on a qual­i­ta­tive ground­ed the­o­ry study with par­tic­i­pant obser­va­tion of ALS patients using AAC and BCI sys­tems, this approach oHers a nuanced pic­ture of how patients, tech­nolo­gies and care prac­tices inter­act to form func­tion­al com­mu­ni­ca­tion net­works. The analy­sis goes beyond just func­tion­al­i­ty and explores the cul­tur­al, his­tor­i­cal, and polit­i­cal lay­ers that cross these inter­ac­tions. The results high­light the abil­i­ty of AAC and BCI to change not only the way ALS patients com­mu­ni­cate, but also the way they are per­ceived and per­ceive them­selves in terms of
their abil­i­ties and iden­ti­ties. These tech­nolo­gies, as the find­ings show, have the poten­tial to expand and recon­cep­tu­al­ize the bound­aries of what is tra­di­tion­al­ly under­stood as dis­abil­i­ty, which con­sid­ers a broad­er spec­trum of human expe­ri­ence and embod­i­ment. The dis­cus­sion extends to the impli­ca­tions of these find­ings and sug­gests that engag­ing patients as co-cre­ators could lead to more adap­tive and engag­ing tech­nolo­gies. The inter­twined socio-bio-tech­ni­cal land­scape points to a future where inclu­siv­i­ty is an inte­gral part of the design process and where the exper­tise of peo­ple with dis­abil­i­ties is rec­og­nized and valued.z