TV star and disability campaigner Jono Lancaster helps create guide for parents on facial disfigurement

TV star and disability campaigner Jono Lancaster has helped create a new guide for families in the hope of normalising facial difference and opening up the conversations to have with with children.

By Joanna Wardill
Tuesday, 18th May 2021, 4:45 am
Jono Lancaster who has Treacher Collins Syndrome. Picture: Tony Johnson
Jono Lancaster who has Treacher Collins Syndrome. Picture: Tony Johnson

Jono, of Normanton, Wakefield, was born with Treacher Collins Syndrome - a rare genetic condition, believed to affect around one in 10,000 babies, which meant he was born with no cheekbones and hearing difficulties.

He has gone on to be an avid campaigner and set up his own foundation called Love Me Love My Face, to raise awareness and support families with Treacher Collins Syndrome.

Now, in his role as an ambassador for the charity Face Equality International (FEI), he has helped create the first ever guide for parents on facial difference.

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Working with fellow ambassadors and campaigners Adam Pearson and Carly Findlay, the guide’s release marks the third annual International Face Equality Week - a global campaign aiming to highlight the contemporary issues facing people with facial differences.

The guid contains simple to absorb tips and illustrations detailing how to discuss facial disfigurement with children, how to react if your child points at a person with facial difference out in the street and the best ways generally to normalise an underexposed area of diversity for little ones.

Jono said: “This guide is to tackle moments like when a child is helping mom do the big shop in the supermarket asks: ‘Mom, what's wrong with that mista’s face?’

“Then the mom goes ‘shut up’, drags the child away and they both scuttle off in the other direction whilst trying to avoid me for the rest of the time.

“All I really expect is for you to be open-minded and to be greeted with a genuine smile.”

Research by Changing Faces - a UK charity for anyone with a scar, mark or condition which makes them look different - found almost 23 per cent reported feeling self-conscious going out in public as a result of their visible difference.

Charity chiefs at FEI said they took advice from members and experts to create the visual guide, to help change perceptions among children - as part of the charity’s remit to advocate for people with facial disfigurements.

Phyllida Swift, the charity’s CEO, said: “Many of the negative experiences faced by someone with a facial disfigurement are a result of unwitting, well-intentioned awkwardness around saying or doing the wrong thing.

“But a drastic drive for greater education across key sectors and communities can all help us to make face equality a reality.

“That’s why we’ve created this guide for parents, recognising the power that they can have in shaping young minds to respect and understand difference.

“Education starts at home, and we want to guide and encourage shame-free, open conversations from an early age.”

Although the guide is aimed at people who don’t have personal experience of disfigurement, it can be equally helpful for people who do.

Further information and tools can be found on at

To support the campaign, download the guide at here.

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