Emma Lawton was diagnosed with Parkinson’s disease at 29-years-old, leading to issues with her mobility such as limb stiffness, unsteadiness and pain.
The now 42-year-old also suffers from an unexplained spinal deterioration seven years ago, leading her to have major surgery to pin her spine with titanium rods.
Emma told the News Shopper: “Parkinson’s is a very difficult condition to live with because it is so changeable.
“There are around 70 symptoms, you could line us all up in a row and we’d all present really differently.
“You can literally go from being someone that can walk into a room, to being bent over and in pain within five minutes.
“With these conditions, people often see you at your best because you don’t go out when you’re at your worst.”
Emma receives Personal Independence Payment (PIP) and Universal Credit, which she uses to help her with daily tasks that she would otherwise find “very difficult”.
Emma said that she uses the funds for things such as pre-prepared food, laundry, and taxi fares to get her to and from her freelance work.
According to research from the charity Scope, the average disabled person pays up to £1,010 a month due to additional costs associated with their disability.
Emma said: “It’s all about if you’re trying to fund the equivalent lifestyle for someone that hasn’t got a condition against someone who has, then those are the things that are important to me.
“It’s important that I don’t turn up in shabby clothes and I look respectable and responsible if I’m trying to do work.
“But it does make it very hard when you’ve got something like Parkinson’s to actually firstly show up, but also secondly to not let yourself down.”
Emma, who was once a graphic designer, was forced to give up her full-time career following her diagnosis, and now works as a freelance keynote speaker working when her condition allows.
Parkinson’s is a progressive disorder that impacts the nervous system, causing brain cells to weaken, which can lead to a huge array of symptoms such as loss of balance and weakness.
“It was a real process coming to terms with not being able to work full time and do what I love,” Emma said. “Without the money I get I’d be more isolated, because it helps me to afford things like a taxi or prepared food when I’m having a flare-up.”
But this could potentially change under Chancellor Rachel Reeves’ proposed cuts to welfare by £5 billion, including several reforms to PIP and the eligibility criteria.
Speaking on her previous PIP assessment, Emma described feeling “totally humiliated” and felt like she was being “caught out”.
Emma said: “You’re there trying to represent the fact that you have a neurological condition which is changeable, and they don’t seem to understand that really.
“When I got my notes back they had written ‘you said you couldn’t walk two metres, we saw you walk two metres’.
“They obviously looked out of the window and checked me as I walked off, and if they had checked me for long enough they’d have seen within the next metre after that I had to grab hold of a tree, because I couldn’t walk.
“It’s a horrible experience and I didn’t feel like I was being supported.”
For Emma, PIP is vital for her confidence and quality of life, as someone with a fluctuating condition that can be worsened through things like stress.
She added that she felt that “lack of understanding” towards changing and invisible disabilities was a huge concern for her.
Emma explained: “At the moment PIP gives me the confidence to know that I can show up the same as other people. I think it would make me lose a lot of my confidence in a way if I lost it.
“I’m not sponging, and I’m not saying that other people are.
“I think I just feel disappointed in the system, because I think I’m not the person that’s doing this wrong, I think I’m doing everything that I possibly can to prove that I’m grateful for it, and that it helps me and supports me.”
James Taylor, Director of Strategy at disability equality charity Scope, said: ”The Chancellor has confirmed a plan to massively cut disability benefits and as a result lower the living standards of disabled people pushing more into poverty.
“It is obvious these cuts are simply about saving money and not by the “moral” desire to get more people into work.
“The government needs to listen to disabled people and understand the catastrophic impact these decisions will have on their lives.”
