Heads Together: Non-Visible Illness and Disability Community-Building

This intervention at UCL addresses the overlooked issue of chronic migraine, a non-visible disability affecting over a million people in the UK.

Heads Together facilitated critical engagement with how disability is noticed and lived through a creative community-building project at UCL. It was aimed at those working with non-visible disability, the neurological condition chronic migraine, which affects more than 1 million people in the UK. 

According to the Migraine Trust, 24% of chronic migraine patients have left a job due to their migraine. 43% felt their workplace had not believed them when they had taken sick leave due to a migraine attack, and 34% had felt discriminated against at work. 

13% of UCL staff have declared a disability, but only 51% of staff describe themselves as having ‘no known disability’, leaving a substantial proportion of remaining staff to answer ‘not known’ or not answer the question at all. A migraine can be challenging to manage in the workplace. Implementing reasonable adjustments may require coordination between a range of support structures and processes; examples at UCL include Human Resources, Occupational Health, Digital Accessibility, Information Service, UCL Estates and departmental colleagues such as line managers. Engaging with these discrete and often disconnected individuals and teams can be time-consuming and labour-intensive, and requires the person accessing support to repeatedly discuss sensitive information about the health. 

Through two disability justice workshops, the project aimed to create a supportive environment for staff to discuss their experiences and challenges. It sought to build community among staff with non-visible disabilities and produce actionable outcomes to improve workplace inclusivity and mental health support at UCL. 

It was found that despite the variability of migraine as a condition, participants agreed on several tangible adjustments which would assist in managing migraine at work. For example, a quiet, dark room for isolated rest, adjustable lighting, and temperature/climate control. The results culminated in a report ‘Heads Together: Community-Building for Non-Visible Illness and Disability’ with specific recommendations to be shared with key teams and individuals at UCL to explore best practice, gaps in provision and better ways of working. 

Image credit: Dr John Miers