Reflections and intersections: disability, ‘ableism’ and metamodern leadership

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Abstract

In this article the author, the eightieth President of the Medical Women’s Federation and a clinical academic, reflects on disability, gender, and leadership. She draws on lessons from her sixteen-year NHS career in HIV Medicine in East London, UK. She explores her experiences and challenges as a Consultant Physician who became invisibly disabled and reflects on how her chosen leadership style has evolved in parallel. Readers are encouraged to reflect on invisible disability, ‘ableism’ and how to navigate conversations with colleagues.

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Most cited references 5

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Fraser C. Henderson, Claudiu Austin, Edward Benzel … (2017)

The Ehlers-Danlos syndromes (EDS) are a heterogeneous group of heritable connective tissue disorders characterized by joint hypermobility, skin extensibility, and tissue fragility. This communication briefly reports upon the neurological manifestations that arise including the weakness of the ligaments of the craniocervical junction and spine, early disc degeneration, and the weakness of the epineurium and perineurium surrounding peripheral nerves. Entrapment, deformation, and biophysical deformative stresses exerted upon the nervous system may alter gene expression, neuronal function and phenotypic expression. This report also discusses increased prevalence of migraine, idiopathic intracranial hypertension, Tarlov cysts, tethered cord syndrome, and dystonia, where associations with EDS have been anecdotally reported, but where epidemiological evidence is not yet available. Chiari Malformation Type I (CMI) has been reported to be a comorbid condition to EDS, and may be complicated by craniocervical instability or basilar invagination. Motor delay, headache, and quadriparesis have been attributed to ligamentous laxity and instability at the atlanto-occipital and atlantoaxial joints, which may complicate all forms of EDS. Discopathy and early degenerative spondylotic disease manifest by spinal segmental instability and kyphosis, rendering EDS patients prone to mechanical pain, and myelopathy. Musculoskeletal pain starts early, is chronic and debilitating, and the neuromuscular disease of EDS manifests symptomatically with weakness, myalgia, easy fatigability, limited walking, reduction of vibration sense, and mild impairment of mobility and daily activities. Consensus criteria and clinical practice guidelines, based upon stronger epidemiological and pathophysiological evidence, are needed to refine diagnosis and treatment of the various neurological and spinal manifestations of EDS. © 2017 Wiley Periodicals, Inc.

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Author and article information

Contributors

Chloe Orkin: (View ORCID Profile)

Journal

Title: BMJ Leader

Abbreviated Title: leader

Publisher: BMJ

ISSN (Electronic): 2398-631X

Publication date (Electronic): December 19 2022

Page: leader-2022-000623

Article

DOI: 10.1136/leader-2022-000623

SO-VID: 622fe4eb-4f55-4eb1-8470-ddb1379afd82

License:

Free to read

http://creativecommons.org/licenses/by-nc/4.0/

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