Published: 01/06/2016 Tags: Ehlers-Danlos in the News

Can raising awareness ever be detrimental?

Awareness is a crucial component in making positive change. The process of raising awareness, however, is not simple, and not always positive in itself. When a subject is provocative, delicate or highly complex, it is inevitable that the conversation will attract a number of voices that don’t always strike the same chord.

Causes that consistently work to increase awareness – such as gender equality, LGBT+ identity, mental health, minority discrimination and many more – provoke passionate discussion. Passion is both catalyst and carrier for positive change, but such passion must also be informed. The discussion requires voices with experience and education that are relevant, to help ensure the conversation does not hinder rather than progress the cause. If an individual with the best of intentions inadvertently misrepresents the ethos of a movement, or over-simplifies a complex condition, other individuals with different experiences may feel validated in questioning that effort.

One recent example of this is Steven Fry, renowned for being both a highly successful comedian and passionate mental health advocate. Fry openly shares his ongoing battle with depression, adding an influential voice to the fight for more awareness. However his efforts have been met with various responses, notably from Professor Richard Bentall. In Bentall’s powerful open letter to Fry, he discusses the complexities of mental health, questions whether Fry’s acts of advocacy unintentionally silence individuals who battle the same condition, and calls for all advocates to have a real awareness themselves of how complex such conversations are.

The questions then arise: Is it more important for advocates like Steven Fry to be able to share their stories, even with potentially misleading information? Is the very act of raising awareness around a cause inevitably going to lead to disagreement? And, if so, is this detrimental to the cause itself?

We posed this question to Deanne Jade, Psychologist and Founder of the National Centre for Eating Disorders, Lara Bloom, Co-executive Director of The Ehlers Danlos Society and Nicole Bradfield, Managing Director of Neo, to gather their thoughts.

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