Reasonable and Reality: What Ehlers-Danlos and Hypermobility Can Teach Us About Access
Online 13th June 11:15-11:50
Charlotte Twinley
Charlotte is an Accessibility and Inclusion Specialist at Diversity and Ability. She was diagnosed with Ehlers Danlos Syndrome (EDS) at 15 years old, after years of going backwards and forwards to various doctors. EDS affects the majority of their body – particularly the joints, the digestive system and their energy levels. After a few years, their digestive system worsened to the point where they couldn’t eat any solid food for over a year. She then had surgery for a stoma and is now able to eat again, as well as live her life to the full.
Since then, she has advocated for and raised awareness of disabilities and chronic illnesses on social media, particularly Instagram. They also talk about the importance of mental health and representation in the media. In raising awareness of disabilities, she has collaborated with numerous brands for campaigns, and taken part in a variety of speaking events, panels and podcasts.
Reasonable and Reality: What Ehlers-Danlos and Hypermobility Can Teach Us About Access
The realities for people with Ehlers-Danlos Syndrome (EDS) are endlessly diverse. But what often unites them is one shared experience: a long, painful, and frustrating diagnosis experience. Professor Rodney Grahame once said “No other condition in the history of modern medicine has been neglected in such a way as EDS”. The Ehlers-Danlos Syndromes are a group of connective tissue disorders that can affect any part of the body. Symptoms can first show pre-adolescence, but with diagnosis often taking over 10 years, students are experiencing barriers throughout their education with little to no support.
Charlotte Twinley, Accessibility and Inclusion Specialist, was diagnosed five years after she first noticed symptoms at the age of ten. She will touch on her experiences with EDS, sharing an insight into the multiple, intersecting barriers they faced in accessing and participating in her education and life. Drawing on her own personal experiences, she will highlight the fundamental flaws with the medical model of disability and how we approach ‘reasonable adjustments’. They’ll unpack the social model of disability and how it applies to dynamic, often ignored disabilities.
Through practical examples, Charlotte will demonstrate the problems with the current diagnosis-based model of ‘reasonable’ adjustments and disability support in higher education. They will critique the pathways established by this model, particularly focusing on how they reinforce societal and attitudinal barriers, problematise difference, and further widen the disability education and employment gaps (which currently sits at over 16% for disabled people achieving a degree qualification, and 29.8% for disabled people accessing employment). Finally, she will offer an alternative path, founded in the social model of disability, that embeds accessibility and inclusion in our cultures, communities and campuses. They will provide tangible examples of how an inclusive campus model can transform our diversity and inclusion efforts, encouraging individual and institutional success and creating spaces in which everyone can thrive.
Attendees will leave this session with:
– An overview of the barriers faced by people with EDS, hypermobility, and other marginalised, misdiagnosed and dynamic disabilities
– A deeper understanding of how the medical model of disability creates barriers to learning participation
– A grasp of the barriers individuals and communities face in accessing ‘reasonable adjustments’, and how an alternative approach to adjustments can encourage diversity and reduce barriers
– A vision for a new, inclusive model for education, work, and society, and a practical list of actions we can take at an individual and institutional level to create culture shifts
– A practical to-do list for how to make the changes that foster authentic, intersectional inclusion