Living with dwarfism, I can’t leave the house without people pointing
It was a Friday afternoon when my husband Michael texted me: ‘What do you fancy doing this weekend?’
‘It’s been a busy week at work,’ I replied. ‘Should we just have one in the house?’
It wasn’t entirely true. Yes, my job in a doctor’s surgery had been manic but that wasn’t the reason I didn’t want to go out.
No, this was one of those weeks where I just couldn’t face the world.
I couldn’t face the pointing, the staring, the laughs, people taking photos – all things that inevitably happened whenever Michael and I went out. I couldn’t face the impact I knew that would have on my mental health.
You see, we were both born with different forms of dwarfism – I have a rare form called Spondyloepiphyseal dysplasia congenital, and stand at 4ft, while Michael has achondroplasia, the most common form, and is 4ft 4in – and despite, or more accurately, because of, our small stature, we always stand out in a crowd.
Now don’t get me wrong, I have extremely supportive friends and family, I grew up in a small village in the Peak District and didn’t get bullied in school about my size and I count my lucky stars that I met Michael back in 2015 at a Little People UK’s convention.
However, ever since I was a child, even before I knew I had dwarfism, I realised that whenever I left the house, people stared at me. It made me feel very sad and angry. My parents would notice how quiet I was and said, ‘What’s wrong?’
And then the tears would come. I felt hounded when people would literally follow me around shops and sometimes I couldn’t escape them. I felt very alone because I noticed they didn’t stare at anyone else like they did me. It made me feel different to everyone else.
Then, when Mum told me about my condition, I learnt to avoid the people looking at me, going up a different aisle in the supermarket or crossing the road. Anything to get out of their way – and of their eyeline – as quickly as possible.
Over the years, as I’ve started leaving the comfort zone of my village where everyone knows everyone, it’s just got worse.
I remember once a woman saw me going to meet friends for dinner and drinks. ‘Aren’t you cute?’ she squealed, taking a picture of me. The familiar feelings of embarrassment and anger started to rise but I kept my voice polite.
‘Please don’t do that,’ I said clearly. Ignoring me, she kept on clicking.
This isn’t just a one off. Every time I leave the house, I face similar situations. It’s like going into battle, just stepping outside my front door. I have to prepare myself, put on my mental suit of armour for whatever may come.
Sometimes of course, it will go well, and only a few people will do a double take. That’s when I get home and breathe a sigh of relief.
Most of the time though, I’ll hear people laughing at me or see them pointing me out to their friends. Once a man followed me along a street, trying to shake my hand, until I retreated into a shop and asked the manager if I could stay until he’d gone.
Another time, on holiday in Lanzarote, a man bent down on his knees in front of me, demanding a hug. Thankfully, my family were there to usher me away.
These things are intimidating for any woman but because of my size, of course, I feel particularly vulnerable.
The constant unwanted attention, the anxiety of going somewhere new, the worries of how people might react, are constant concerns that weigh heavily on me.
And sometimes, I just can’t face it. That’s when I’ll stay indoors for the sake of my mental health, rebuilding my sense of self and my self-confidence, before I can go out again.
As Mike says, it’s like we’re the last remaining butt of the joke. People now realise how wrong it is to be homophobic, racist, sexist – but it is still somehow deemed acceptable to make fun of people our size.
Just three years ago, in June 2019, Jimmy Carr ‘joked’, ‘Is a dwarf an abortion that made it?’
Despite the obvious gross offensive nature of this sentence, Carr – with his huge audience – made it acceptable for people to laugh at us.
Also, we are not ‘dwarves’ – we shouldn’t be labelled by our condition. We are people, firstly, with a condition called dwarfism, secondly.
I think it’s easy for people to forget this – that we are people, with thoughts and feelings and our own mental health struggles. People that are generally going through a lot more than others ever realise.
Living in a world that is designed for people taller than us, every day is a struggle. Food shopping is a nightmare, going out for a drink and sitting in too-big chairs is physically painful and even being in our own homes, with shelves and switches out of reach, isn’t easy.
And that isn’t even counting the physical issues and problems our condition brings. People with dwarfism are often plagued with problems in their joints. I can’t remember how many times I’ve had surgery – definitely more than 15 – and I live in constant pain. The only place I am truly comfortable is on my reclining sofa.
I’d like to think that if people realised these things, they might be kinder to us, to spare us the emotional trauma that their stares and points cause.
Because it does cause trauma. I’m sure people think they’re the first to laugh and nudge their friend, and probably don’t think about it again. But when the next person, just further down the same street, does the same thing, then the next, it has a huge impact on my mental health.
I know three people with dwarfism who have taken their own lives in the last three years – and I have no doubt it was because of the daily battle of everyday life.
I usually try to keep my temper – for my own safety, more than anything – and just ignore people’s reactions. Michael, on the other hand, will often confront people. ‘We can hear you,’ he’ll inform them.
They’ll usually go red and stop talking.
Only once have I ever become really cross. Michael and I had had a lovely day, shopping in York, and had stopped off for dinner before going home. As Michael went to the bar, I saw a man, sitting with his girlfriend, take Michael’s picture. The girlfriend shook her head and rolled her eyes.
I was livid. So when he got up to go to the toilet, I followed him. ‘I’ll take his photograph, see how he likes it,’ I thought furiously, bursting in after him. Rather than going to the toilet, though, he was doing his hair. ‘What are you doing in here?’ he gasped.
‘Delete the photos you took of my husband,’ I told him firmly.
He squirmed, denying he’d even taken a picture. Leaving him in the toilet, I stormed back to my table. ‘You could do way better than him,’ I informed his girlfriend. I watched as they both left the bar shame-faced – then my whole body started shaking.
I’m so proud whenever I think of that moment – because we need to stand up for ourselves.
That’s why I’m watching Strictly Come Dancing avidly, in complete awe of Ellie Simmonds. She is such an incredible person – and probably the biggest voice people with dwarfism have ever had.
So please, if you do see anyone with dwarfism – or indeed, anyone with a visible difference – don’t stare or point. You have no idea what that sort of behaviour does to our mental health.
See the person, not the disability.
As told to Sarah Whiteley
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