CIRAC is pleased to announce ENDO//CONNECT: Disability, Endo Violence, and Inclusive Digital Care, a new exploratory research project led by Dr Alekszandra Rokvity. The project is funded by the University of Leeds and forms part of the INCLUDE+ Inclusive Digital Economy Network.
As part of INCLUDE+’s work on inequalities in digital spaces, Dr Alicja Pawluczuk has developed the concept of endo violence, which draws attention to forms of violence and inequality experienced by people living with endometriosis. ENDO//CONNECT builds on this conceptual work by exploring endo violence specifically in the context of digital spaces and practices. The project further develops the concept by connecting it to the wider theoretical framework of crip studies, as well as to previous research on the role of social media and digital health literacy in shaping the care, knowledge and support available to people living with endometriosis. ENDO//CONNECT examines how digital endometriosis spaces shape whose experiences become visible, whose knowledge is recognized, and who is able to participate. At the same time, the project explores forms of labor that often remain invisible, particularly the unpaid, emotional and epistemic labor performed by patient-content creators.
A central component of the project is a collaborative online workshop with Instagram content creators producing endometriosis-related content. Bringing together creators with diverse backgrounds, experiences and audiences, the workshop will provide a space to discuss the realities of creating endometriosis content and to collectively reflect on the inequalities and challenges shaping digital endometriosis spaces. The workshop will combine facilitated discussions and think-tank sessions with expert input from Emma Shapiro, MSc Hannah Parle and Neelam Heera, whose contributions will address digital representations of gendered bodies and algorithmic bias, ADHD and endometriosis, and racial bias in endometriosis care and representation, respectively.
The insights generated through the workshop will inform a publicly accessible digital resource for endometriosis content creators. Combining research-based knowledge with the experiences and expertise of people actively shaping endometriosis communication online, the resource will provide practical guidance for developing more inclusive, accessible, representative, accurate and sustainable forms of digital health communication.
ENDO//CONNECT runs from August to October 2026.