"Those eyes that look at you: somatic modes of care in professional encounters with amyotrophic lateral sclerosis patients”: New article by Ángel Martínez Hernáez
New article by Ángel Martínez Hernáez, published by Social Science & Medicine: <<"Those eyes that look at you:" somatic modes of care in professional encounters with amyotrophic lateral sclerosis patients>> (2026).
In the advanced stages of amyotrophic lateral sclerosis (ALS), individuals experience a gradual and irreversible loss of speech and voluntary movement, while cognitive and emotional capacities often remain largely preserved. ALS frequently culminates in the locked-in state (LIS), where subjectivity endures despite an almost complete breakdown of expressive capacity. This article examines how professional caregivers sustain relational engagement and recognition under such conditions. The analysis draws on eleven qualitative interviews with social workers, psychologists, occupational therapists, nurses, and a neurologist working in Catalonia (Spain) in long-term home-based and community care for people with ALS. A hermeneutic phenomenological approach was used to explore how professionals perceive, interpret, and respond to patients whose expressive capacities have largely disappeared. Findings show that communication does not cease but is reconfigured into embodied forms such as gaze, muscle tone, breathing patterns, tears, and silence. Caregivers describe these signs as requiring perceptual attunement and temporal continuity. Building on Thomas Csordas's idea of somatic modes of attention, we conceptualize "somatic modes of care" as the embodied, affective, and ethical practices through which relation and subjectivity are sustained when language fails, a dimension inherent to all care, but rendered especially visible and indispensable in ALS and LIS. For professionals, personhood emerges as a fragile relational achievement upheld through recognition, memory, and sustained presence. Somatic modes of care thus offer an analytic lens for understanding how subjectivity is maintained under radical communicative constraints, with implications for clinical practice and for broader debates on care, embodiment, and relational ethics.
Share
