“I have a disability, but to my girls, I’m just mummy”: Paige’s story

Life is full on for working mum Paige Barnes. She and her partner both work at Heathrow Airport, where Paige is a security guard, while also raising their two young daughters, 18-month-old Arabella and three-month-old Millie.

Paige was born deaf and registered blind at 17, diagnosed with Usher Syndrome. She writes about raising her children to be disability advocates and about how she has continued to live her life to its fullest, no matter what.

To celebrate Disability Pride Month, Paige shares her story…

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Diagnosis

I’ve worn a cochlear implant since I was a baby, which helps me to hear. I lip-read, too. But I didn’t actually find out I was registered blind until I was 17.

I’d always had poor eyesight, but when I went with my mum to get some new glasses, the optician told her that I was blind. She was so shocked. ‘No, it can’t be true’, I remember her saying.

After this, I was diagnosed with Usher Syndrome Type 3, a rare genetic condition that affects my hearing and vision over time.

When my mum asked how I hadn’t noticed something was wrong, I had just assumed it was normal and that everyone saw the world that way.

Finding confidence

When I applied for the role at the Airport, the job was ‘disability confident’, which gave me the confidence to go for it.

I work on the security lanes, carrying out body searches, searching bags, scanning boarding passes and patrolling the terminal. Although my peripheral vision is affected, my central vision is strong, so visual tasks are one of my strengths.

My employer has been very supportive, and we’ve found adjustments that allow me to do my job safely and effectively.

My condition has made me resilient, determined, and always focused on safety. I may have a disability, but you can do anything you want to do.

Finding love

I wasn’t treated very nicely in primary school because I was seen as different. Kids can be quite cruel about differences.

As I got older, nobody wanted to date me. When I made a profile on Tinder, I spoke to a couple of boys, but when they found out I was deafblind, I never heard from them again. It really knocked my confidence. I took it really personally.

Then in 2022, Sam sent me a message. He was the first person to actually meet up with me as a hearing person. It took a lot for me to have the courage to meet him.

When I told him I was deaf, I thought he’d stop replying. Instead, he said, ‘Is your blood red?’ I replied ‘yes’. And he replies, ‘there you go, we’re the same.’ That stayed with me. I was emotional. I knew he was the one.

Becoming a mum

I always wanted to be a mum. But I had concerns of passing on Usher’s to my baby. Thankfully, both Arabella and Millie have been born hearing well.

I adore being a mum. It’s the best job in the world.

Everyday challenges

I can’t drive, which limits where we can go, and I can miss things in my surroundings.

One time, I was out walking with my baby daughter when I collided with another mum.

I said “sorry, sorry” and hurried on. But it shook me and knocked my confidence. These things happen when you’re deafblind, the world isn’t always set up for you to see what’s around you. Without peripheral vision, I hadn’t seen her approaching.

At night, I need all the lights on to do simple things like make a bottle. If the girls drop a dummy, I’m on the floor feeling around for it.

Just like any family, I plan ahead, stick to routines, stay organised and keep my children close. But busy places make things harder – those situations can feel more stressful for me than they might for another parent.

I just get on with it and do my best.

My children