Stop the stares and speak to me about my life
SARAH Bowdidge is fed up of being stared at, of feeling less than, of being told she is an inspiration simply for living her life.
The journalist and communications worker from Bridgend just wants to lead as normal a life as she can, and promote conversations and understanding around disabilities – and she says she now feels ready to share her story.
She knows the celebration of her life by her friends and relatives comes from a good place. “When I was born I was given a very low chance of surviving to my first birthday.
“My parents and grandparents were given pictures by the nurses as a token of remembrance. I’m now 22 and I’m pretty sure I’m the only person living in Wales with TAR syndrome,” she told Wales on Sunday, sitting outside a small coffee shop speaking expertly about her condition and its challenges in a particularly busy Bute Park in Cardiff.
Thrombocytopenia-absent radius syndrome, or TAR syndrome, is a rare condition characterised by low levels of platelets in the blood and an absence of the long, thin bones in the forearms, resulting in noticeably small arms. So little was known about the condition when Sarah was born in 1999 that nurses had almost given up on her at birth.
Describing her early years, Sarah explained: “My mum gave birth to me naturally because she didn’t know anything was wrong. There were a lot of complications due to me having low blood platelets. I was born with 7,000 platelets, which is a serious bleeding risk. A healthy average is 170,000 – so it was a critical situation, and I had a lot of blood transfusions to keep me alive.
“On my first birthday it was like this massive achievement because they didn’t think I’d live that long. For the first three years of my life I practically lived in a hospital in Sheffield, and when I turned three I had the portacath removed and my parents took me to Disneyland. That was the first time I ever felt close to being a normal child.”
Mulling over her life with an iced latte – her arms out in the beating midday sun while students mill around her during Cardiff University’s graduation week – she looks every inch a confident and assured young woman, despite her unique condition. But that’s not the full story. In fact, it’s nothing like what she experiences daily.
Life has never been normal for theatre-loving Sarah. She is still in and out of hospital, she despises not being able to take part in sports she knows she’d love, she is incessantly stared at, and she often feels anxious around others.
“I moved to Wales when I was six and I’d just started at my new primary school when a boy shouted across the playground on my first day: ‘Call an ambulance, she’s broken her arms,’” Sarah recalled. “I was at an age where I was beginning to realise people were looking at me, talking about me.
“It became really hard, especially when trying to make new friends. I was the only person in the school with such an obvious disability. That’s not an easy thing to contend with.
“The name calling stopped a little as I grew older, people became less cruel. There have been some things since that I remember. On one occasion I was in a children’s park and was called a monster by some of the kids, who I didn’t even know.
“I’ve had people stop in their tracks and follow me around supermarkets. I was once referred to as the devil and followed around a market in Spain. So it still happens, but I’m happy to say really awful things like that tend to be more sporadic these days.”
What is much more common is the staring she contends with, which she says is continuous and can send her into a spiral of anxiety and depression.
“Some days it’s easier to cope with than others. I don’t mind a quick stare, but it’s when people stare and then flick their head around again as they walk by me. That happens a lot.
“I was on the bus the other week and a child was staring at me and my arms for a long time before saying: ‘Mummy, what’s wrong with her?’ It’s so interesting to see how parents respond to that.
“I don’t think it’s a bad thing for children to be interested and ask why people look different, but it’s amazing how many parents try to shut their children up and pretend the question was never asked.
“I’ve actually had quite a few children come to me and ask me what’s wrong with me, and they tend to be genuinely interested and when we have a little chat about it they walk away. I love that because it normalises things for them and for me.”
We are here to discuss her campaign Speak Don’t Stare – which is still in its infancy but has made great strides already. Her documentary which aired on BBC Wales last month featured her holding a banner in some of the busiest spots in Cardiff encouraging people to speak with her about her arms. It was also nominated for Best Documentary 2022 at the It’s My Shout Awards. It’s a campaign which the aspiring broadcaster hopes can transcend to others with disabilities.
“I decided on trying to make a documentary because writing a book about myself didn’t seem genuine or authentic to me,” Sarah explained. “I didn’t really want it to come across as me writing this inspirational piece about myself.
“Stacey Dooley is one of my biggest heroes, and I felt so inspired after meeting her in Cardiff just before the pandemic, so I rang up the BBC and reached the head of commissioning, who told me I needed financial backing.
“I went back to It’s My Shout in Bridgend who told me about the New Voices from Wales Documentary Scheme and it’s gone from there.”
She has been enthused by the response to her campaign through the documentary and via Instagram, where she’s set up her own page to share the Speak Don’t Stare message. She is intent on presenting her authentic self on social media – warts and all.
“I see quite a lot of disabled influencers on social media showing themselves as positive all the time, but I feel like I can’t be that person, and I won’t be that person because that’s not the truth. I’m hoping to share some of this in the future to show how I cope on a day to day basis. I have found it very hard to stay
positive often in my life.
“Staring is going to happen and you’re never going to stop people staring at you if you don’t fit what people consider to be normal. But I hope I can encourage people to speak with me and with each other about our differences.
“I want people to know that I’m a person, not just a body with small arms for you to stare at. I have feelings, and if you stop and take time to have a conversation with me, my day can be completely changed for the better. If people stare at me and walk on it can send me into a difficult place.
“I’m not confident by any means, and there are some days where I literally don’t want to go outside because I’ll just be too panicked by it. The only way I can really describe it is like a relationship between me and my hands. Some days I’m good with them, and others I think no there’s no way anyone is seeing them today. Today is a good day.
“I really struggle with the concept of being an inspiration because I don’t see myself in that way. I’ve been told by friends and family that I am an inspiration but I just want to show I’m doing my best and living my life. If someone with a disability or otherwise happens to be inspired by me then I’m honoured, I think that’s lovely, but it isn’t my aim. I don’t want to be put on a pedestal. But I’d like people to feel encouraged to talk more and learn.”
The condition means Sarah struggles to get private health treatment because she is, as she puts it, “a liability”. “If I was to fall then even a small bleed could be really dangerous for me, because a lack of platelets means the blood might not clot effectively. It could potentially be fatal, so I make sure to have my platelet levels checked every month.
“There are other things, sort of silly things you might not think of really, that come with TAR. Things like waking up in the morning and needing the shower and not being able to reach the showerhead.
“I feel very independent and I try to be as independent as I can, but even cooking can be a challenge. I now get my supermarket shop delivered to the house because I was constantly asking for help reaching for things. When you have a condition like TAR it’s not something you can really ever switch off from. I have to constantly think 10 steps ahead, which is exhausting.
“Just as an example, on my way here the disabled toilet on the train was closed – clearly an issue. When I eventually got in I then got stuck in the toilet because I couldn’t turn the knob to get out. Life should be easier for people like me, not full of constant roadblocks. But unfortunately we are not the first people organisers think about – we usually come near the end.
“I also struggle with sport and exercise, despite being very competitive. My boyfriend went indoor rock climbing which I would have loved to have joined in with.
“In my head I can do it. I’d really, really like to do it. It’s not something I’ve ever got used to. I get really excited when I think about doing it and then have this sinking feeling of resignation when I realise the reality again.
“I’m a big fighter for independence and I’ve always tried to be as positive as I can in my outlook. I hate the concept of people who are disabled being seen as lazy by choice or that we’re happy to not work and live off benefits because that’s simply not the truth.”
At just 22, despite her condition, she has achieved a remarkable amount. She is working in a job she enjoys, she lives with her boyfriend of nearly five years and she is making her mark in the world.
But she would love to do more, and she doesn’t feel she has enjoyed equal opportunities.
“I’ve been turned down for many jobs because of my condition, but the worst one for me was a retail assistant because I couldn’t lift the products onto the shelves without a stool.
“I also got turned down from a job in a store because I couldn’t push the carts around the shop floor. I think it’s a shame because I’m a good talker and I think I’d have done a good job behind the tills.
“Luckily my passion now is in content, journalism and communications. But it has been a struggle, and there aren’t many – if any – role models for me. I never saw anyone on the TV with a physical disability other than one woman who presented CBeebies.
“I’d love to turn on the TV and see me, or any other disabled person, presenting a documentary. And maybe not even a documentary about disabilities, but something totally different.”
Days before her first date with her boyfriend she felt compelled to tell him about her “little arms”. She often wonders how people will react when they first meet her.
“Sometimes I wonder, are people prepared to see me? I worry about what people might think or say. I hate shaking hands. At our school leaving ceremony we had to get up on stage and shake the headmaster’s hand. It’s quite funny really, people have no idea how to shake hands with me. I can see the confusion in their faces before they sort of pick my hand up and move it around a bit.”
The words Sarah used to end her documentary perfectly summarise the message she wants people to hear: “Next time you’re out and see someone with a disability, remember they are a person, just like you.
“They’ve been on stage and acted, they’ve studied and they’ve worked. But whatever you do, whoever you are, the world is becoming more and more inclusive day by day. So do your bit, play your part, and have the confidence to speak, not stare.”
I really struggle with the concept of being an inspiration because I don’t see myself in that way
Sarah Bowdidge