How I learned to live with ectrodactyly

When Warner Bros’ adaptation of Roald Dahl’s The Witches came out this autumn, it was greeted with fury by disability campaigners after it depicted the witches’ hands with two long fingers and a thumb.

Strictly Come Dancing star JJ Chalmers and The Last Leg’s Alex Brooker both expressed their disappointment and the hashtag #NotAWitch began trending on Twitter.

Among those saddened by the depiction of disability was Shannon Crossland. The 24-year-old from Leeds was born with just one finger on each hand and two toes on each foot and it wasn’t until January last year that she finally learnt to accept her body and greet the world with confidence.

She knows better than most how hard the mental struggle of living with the condition, known as ectrodactyly, can be.

Between the ages of two and four, Shannon underwent numerous toe-to-hand transplant operations.

Doctors removed a toe from each foot, including all the blood vessels, nerves, bones and tendons, and attached them to each hand, with the aim of giving her the ability to grip.

But it wasn’t the physical problems that were the issue for Shannon.

‘As a child I would struggle with little things like my shoelaces, buttons and cutting things up with a knife and fork, but you just find your own way to do it,’ she says.

‘It was starting high school when my difference became a real issue for me — it was daunting. There was a pressure to be liked and a desire to be “popular”. I was terrified that I would have no friends due to my limb difference. I made every effort to conceal my hands, I would cover them up by pulling my sleeves over them.

‘I would never wear anything that revealed my feet. I wanted as little attention drawn to me as possible to avoid the possibility of someone noticing my difference.

‘My self-esteem was at an all-time low and I was extremely self-conscious as a teenager. I felt unattractive and my hands and feet were always at the forefront of my mind.’ In total she spent 13 years trying to hide who she was.

‘The turning point was in January 2019. I began to realise how short life was and it was no way to live, hating the way I was.

‘I started my Instagram to connect with others with limb differences and create a positive space for me to go and see representation and inclusivity on my feed. Through seeing others, I felt confident and able to start posting photos of my own difference.’

She is now the ambassador of the I Am Possible Foundation and hasn’t looked back. So much so that she considers the once unwelcome stares an opportunity to educate people. No wonder that she is so sad about The Witches.

‘I felt disappointed that something like this could happen in 2020,’ Shannon says. ‘There is already a stigma attached to being different and having a disability. Often when disabilities are shown in the media it is almost always in a negative way.

‘They are either seen as a villain and given a disability to enhance their evil image, or they are seen as weak and vulnerable. Giving the witch this limb difference in order to make her appear more disgusting and scarier is so damaging to the disability community.’

However, Shannon has been touched by the apology from its star, Anne Hathaway.

‘I think Anne’s apology was sincere and she truly didn’t mean to cause offence,’ Shannon says. ‘It’s great that she used her social platform with millions of followers to shine a light on the issue and to also discuss limb differences and raise awareness.’

Shannon is now engaged to Alex Bennington, who she met in 2014 at a mutual friend’s house party. ‘Alex has been an incredible support to me,’ she says. ‘He encourages me to love myself and calls me out when I say bad things about myself. He’s been an emotional and physical support to me.

‘People often have the incorrect assumption that when an able-bodied person is with a disabled person that the able-bodied one is the only one who provides the support. But I support Alex just as much as he supports me. I would love for my platform to continue to grow so that I can spread awareness of limb difference even further.

‘I want to carry on encouraging others to stop hiding who they are and celebrate their differences.’

What is Ectrodactyly?

Ectrodactyly is a rare genetic condition, characterised by the absence of certain fingers and toes. Webbing of fingers and toes may also be present.

Most people with the condition have fewer than five fingers and toes on a hand or foot and a smaller proportion of individuals affected have finger fusing of the multiple fingers on the hands. It affects one in 90,000 to 100,000 live births worldwide.

Find out more at and @crosslandshannon

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