When Charlie Beswick, a mother of 12-year-old twin boys, uploaded a picture of herself holding son Harry onto Instagram she never expected them to remove it from the site.
Although social media has had numerous positive effects on our lives, allowing us to interact with one another on a daily basis through a variety of platforms, unfortunately its dark side is all too prevalent and trolling is now regarded as a worldwide problem.
More sickeningly, the abuse appears to have no boundaries, regardless of age, gender, race, disability, and now, a 12-year-old boy with a facial disfigurement has become the target.
12-year-old Harry has Goldenhar syndrome and as a consequence has no eye, eye socket, ear or nostril on one side of his face. He also has a short jaw.
As well as been diagnosed with Goldenhar syndrome, Harry is autistic and non-verbal – neither of which are linked to the rare congenital defect – while his twin brother Oliver was unaffected by any of the conditions.
His mother, Charlie, from Stoke-on-Trent, has a parenting blog and is active on Instagram and Twitter, where she frequently posts about parenting her two boys.
Charlie told UNILAD:
I set my social media accounts up earlier this year. I used social media a lot when I was in network marketing so it’s comfortable and familiar for me.
The abuse and name calling started on Instagram but I police it regularly to delete any comments.
In September this year, Charlie posted a photo on Instagram where Harry wasn’t wearing his prosthetic eye. Another Instagram user reported the image and when Instagram’s content moderation team reviewed it, they decided it breached community guidelines. The picture was removed.
Instagram’s community guidelines state:
…It’s never OK to encourage violence or attack anyone based on their race, ethnicity, national origin, sex, gender, gender identity, sexual orientation, religious affiliation, disabilities, or diseases…
Respect everyone on Instagram…
Their subsequent apology stated the removal was an ‘error’, and it seems the social media powerhouse’s team made a mistake.
Disgusted with Instagram’s actions, Charlie started a campaign on Twitter – it received thousands of retweets in support – with many even contacting Instagram to express outrage over the decision
Thankfully, the photo was restored and Charlie continued:
Instagram eventually apologised for any upset caused. I hope they have learned a lesson.
I would have appreciated a public apology, for those who have supported us to see as well, but I guess an email apology is better than none at all!
Check out the twins in action:
In terms of trolling and abuse, Charlie says she used to find it hurtful, but now, concentrates on the positive messages:
I used to find it very distressing. He's my son and to have people call him hideous names is awful. Then I realised the people spouting this rubbish don't even know us and merely want a reaction.
I feel sorry for their empty lives and challenged emotional intelligence. I never respond to them as that's what they want and for every nasty comment, we get a hundred lovely ones. They are the ones I focus on.
When asked about celebrities such as Katie Price, who publicly name-and-shame trolls and what else can be done to combat the online problem, Charlie states:
I think people feel untouchable when they can hide behind a keyboard so knowing there's a consequence for repeat comments would hopefully deter some people.
I would hope their nearest and dearest would be ashamed of them – I don't think people would feel so 'brave' if they knew they could be outed.
It starts with awareness and compassion and I don't think you'll ever fully stamp it out. Discrimination of some sort has always existed. Now, as well as physical persecution we have the online platforms where individuals can target others.
If they were educated early and allowed to develop some understanding I think it would help?
I'm in the process of setting up my own charity called More Than A Face where I will be going into schools to run workshops on facial disfigurement – I want to help the next generation of parents to see a face is more than a snap chat filter and to be able to pass on something of value to their own children in turn.
For me, it's the best way, but it's a very long-term plan. Short-term, I think there should be consequences, fines at least, to those who systematically troll others.
After a healthy twin pregnancy, Charlene and partner Mark were shocked to be told one of their boys had been born with half of his face undeveloped. Within seconds, the happy family future they'd been planning disintegrated into turmoil and uncertainty.
Charlie revealed she had a 'great pregnancy' with the twins and how there was never a mention at any of the scans there was a problem:
I went into labour when the twins were 32 weeks so when they were whisked off, we weren’t surprised, as they were so early but the doctor came four hours later to tell us that Harry has Goldenhar syndrome.
The cause of Goldenhar is unknown but it’s not genetic and one theory is the blood supply between 6-12 weeks gestation is interrupted which affects the development at that time.
It’s rare and just ‘one of those things’ which is why Oliver is unaffected. It’s no more common in twin pregnancies than it is in single.
Harry has had numerous operations – including his skull being opened twice – but Charlie stated she has to decide, along with his father, whether he should be put through anymore:
A lot of his operations now will be to improve the 'look' of his face which we love but society is quick to judge and condemn, so part of us wants to give him the very best chance in life.
We have said no to operations in the past where we feel the trauma or risk outweighs the benefits but we have to take one surgery at a time and make decisions as they arise – it's never easy making decisions for someone else's life.
Charlie has been vocal about her personal feelings and wrote the book, Our Altered Life, documenting her 'transition through grief and anger, challenges and triumphs, loss and acceptance, through to love for the life she now has with two children she wouldn’t change for the world':
My experience has been one of challenge and personal growth. To other parents like me I would say that it does get easier and it's important to talk about your feelings, no matter how dark they are.
You have to make yourself a priority to be able to give your children the care they deserve. An altered life can still be a wonderful life.
The boys have different aspects to cope with. Harry has to deal with the physical operations and recovery which has been really tough at times. His first few experiences of hospital were horrible and left him with a fear of even medical uniforms but he’s much better now thanks to bribery and trips to Toys'r'Us after his operations.
Oliver deals with the emotional aspect of having a brother who looks so different – the name calling and funny looks.
He’s very protective of Harry and acts like a protector ‘big brother’ rather than a twin – he’s had to grow up much faster than other boys his age and make compromises in his life already – he's very mature.
Harry’s autism means he’s not totally aware of his differences and it’s a blessing as well as a shame, as he doesn’t know how brilliant he is either. I’m incredibly proud of them both.
Regardless of our differences as human beings, Charlie's message is one which we can all live by:
To people who see us, or people like Harry who may appear different I would say to judge people on who they are and not just what they look like.
I know many 'beautiful' people who are rotten on the inside – take the time to get to know someone before you make a decision about them.
Every face tells a story and every story deserves to be heard.
What an incredible family.
Charlie writes a blog, Our Altered Life, to help and educate others. She's also in the process of setting up her own charity.
You can also buy her book, 'Our Altered Life' – a refreshingly-honest account of how she struggled to forgive herself and bond with a baby she didn’t expect.