Lose the Label


Lose the Label 

Lose The Label was established in 2013 by its CEO Michelle Clark. Michelle set up the organisation after her own experiences as mother to Mara who has Down syndrome. In the course of everyday life Michelle noticed how there seemed to be a special language used by family, friends and professionals around and about Mara, a language which displayed, in Michelle’s words ‘pre-judgement and diminished expectations.’

From this, Michelle started to research the way society talks about people with Down syndrome and the impact this language can have. Lose The Label was the result of this research.

Lose The Label uses photographic features, training presentations, literature and media communication to challenge the impersonal language that can label and limit the life opportunities for people with Down syndrome.

One of their campaigns has been their series of photographs of children and young people bringing home the point; ‘I am Mikey, I have Down syndrome, I am not Down syndrome.’ https://www.losethelabel.co.uk/photographic-campaign

Their book ‘More than medical’ is a collection of personal stories of families where there is a child or young person with Down syndrome. These stories show the true lived experience of Down syndrome and are intended to be a balance with the medical facts pre-natal parents are often given. ‘More than medical’ is designed as a resource for both healthcare staff and expectant parents who are having discussions about prenatal care choices. It is also a way of gaining access and support for expectant parents who have been given a postnatal diagnosis of Down syndrome for their baby.


Here at Family Carers Net we have been fortunate enough to meet with Michelle Clark in person and she featured in our very first ‘Carers TV.’ Please read her personal story in ‘In Your Words’ on our website.








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