My name is Charlotte Smith. I studied animal care at college, work in my local Co-op store and volunteer for an animal charity. I’m also profoundly deaf and I’ve spent the past three years fighting the government for benefits I need to live on. I had received Disability Living Allowance (DLA) for as long as I could remember.
My mum and I relied on it for day-to-day expenses and the costs that come with being deaf. I also have coeliac disease, and a strict gluten-free diet is expensive. When I was about to turn 18, the Department for Work and Pensions (DWP) told me my DLA was ending and I had to apply for Personal Independence Payment (PIP).
It was really upsetting at the time. I’d been on DLA for years and my hearing was never going to change. It felt like I was being told I wasn’t deaf anymore by someone I’d never even met. I picked myself up with the thought it would be a simple process. In reality, it was the start of a nightmare that took me and my family to hell and back.
I applied for PIP in May 2015. Being assessed for it is not a fun experience. I remember walking into the room and the lady didn’t even look up when she first spoke to me. If I can’t read someone’s lips, I can’t understand them. My mum had to explain this to her, my disability assessor.
My application was rejected because my needs weren’t scored highly enough. They assumed that my cochlear implants gave me full hearing. My mum took on two jobs and was working 50-hour weeks. My grandma had to loan us money. They didn’t consider the difficulties I’d still have hearing and understanding every day, outside the near-perfect listening environment of an assessment room.
We immediately appealed, hoping that they would see we couldn’t get by without it. For the next two years, life became a battle with the DWP while struggling financially. My mum took on two jobs and was working 50-hour weeks. My grandma had to loan us money.
The things most people take for granted, I missed out on. I couldn’t afford to go the cinema with friends. Mum tried to pay for driving lessons for me, but we had to stop because she couldn’t afford it. We couldn’t afford legal advice and we relied on free representation organised by the National Deaf Children’s Society. I blamed myself.
Eventually, after three rejections and three appeals, a judge decided in December 2017 that I was entitled to PIP, and I had been all along. It didn’t last. A letter from the DWP arrived the Friday before Christmas telling us they were considering appealing again. We had to go to another tribunal. I couldn’t believe it.
Eventually, in the summer of 2017, I was finally accepted and received three years of backdated payments. It was an incredible weight removed from all of our shoulders. We used the money to pay off the debts we’d built up during the time we were struggling. We paid Grandma back. I’ve been able to buy a car and I can be truly independent.
I have a hearing dog called Nelson and I can pay for his insurance myself. He loves to swim in the sea and I can chase after him without worrying about boxes to tick, forms to fill in and tribunals to attend. It’s been an unbelievably tough time and it was all so unnecessary.
The DWP needs to realise how difficult it is when you have your benefits taken away from you. They just saw me as another number, another application, not a young woman with dreams and aspirations like any other, who just needed the right support. They also need to train their staff in all aspects of disability, or have certain departments to deal with all the disabilities. A little deaf awareness would go a long way.
I was very lucky that I have my mum, who has fought and stood up for me from day one. If we hadn’t won the last appeal, I think she’d be knocking on the door of 10 Downing Street right about now. I also had some amazing support from Sue, my caseworker at the National Deaf Children’s Society. But not everyone is as lucky as me.
I would say to anyone who finds themselves in my position, whatever disability you have, visible or not, you are entitled to help. Please don’t give up. I’m now gearing myself up for the next battle. I was awarded PIP for four years from May 2015, so I have to apply again now, or it will stop. I’m just hoping it won’t take three years this time.