A disabled woman has been left “terrified” to claim tax-free benefits because she fears the “PIP police” will come after her if she orders a takeaway or gets her nails done.
Maddy Alexander-Grout is already branded a “benefits scrounger” by strangers who tell her to “get back to work” – despite her still working and paying for her own holidays.
The 42-year-old from Southampton lives with multiple health conditions, including Hypermobile Ehlers-Danlos syndrome, and uses a wheelchair.
On her worst days, the severe pain in her back, hips and legs means Maddy can barely move or walk.
“I flit between wanting to claim PIP and being absolutely terrified of it,” Maddy, a disability advocate and ADHD coach, told Need To Know.
“I get a lot of abuse online already.
“Trolls call me a benefits scrounger’ – despite the fact I work – and accuse me of ‘spending taxpayer money’ on enjoying myself.
“Most days, I can’t walk or stand, which rules out any job that isn’t online – but I also can’t sit at a desk for eight hours straight anymore.”
“Not claiming benefits has become armour – like a layer of protection against people who will use this ‘status’ to attack me.
“Went to a festival? Fraud.
“Got my nails done? Call the DWP.
“Bought a takeaway? Straight to jail.
“I can laugh about it, but underneath the jokes, I’m actually scared.
“There are some deeply unpleasant people out there.
“The thought of making that target bigger genuinely frightens me.”
Maddy has Hypermobile Ehlers-Danlos syndrome, mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), ADHD, autism, dyslexia, dyspraxia and Hashimoto’s disease.
She has lived with disabilities since childhood but her autoimmune condition was only diagnosed in 2022.
Over the past year, her health has deteriorated significantly and the cost of remaining independent is mounting.
Maddy’s wheelchair, which she got after suffering an accident in May, cost around £2,000, while she says mobility equipment, including spare batteries, took the total to around £3,000.
She also spends £450 a month on medication, treatment for her Ehlers-Danlos syndrome and therapy relating to her other conditions, as well as extra heating and cooling of her home to cope with her symptoms.
Maddy is often forced to rely on taxis to get around, including when travelling to work meetings in London because the Underground is not reliably accessible for her needs.
Personal Independence Payment (PIP) could cover her extra costs if she decided to apply – but potential backlash is a real concern.
She said: “Claiming PIP would mean all my wages weren’t being taken up with things I have no choice about spending money on.
“Even on limited capacity, I still work and make enough money to pay for these things but I shouldn’t have to.
“It’s not really a luxury to not be able to get around like a non-disabled person.”
Part of Maddy’s job as disability advocate and ADHD Coach involves reviewing festivals, events and holidays from an accessibility perspective – something she says routinely attracts abuse online.
There are also plenty of misconceptions about what disability looks like.
Maddy is an ambulatory wheelchair user, meaning she uses a wheelchair much of the time but can sometimes walk with a stick.
When people see her standing or walking, they question it.
She said: “Just because I stand or walk sometimes doesn’t mean I am not still in pain.
“It most definitely doesn’t take away my disability.
“I am very visible and I am not about to stop living my life to please people who don’t have a clue about how disability works.”
Maddy, who has worked since she was 14, says she has also delayed applying for PIP because she finds the prospect of the process exhausting.
She said: “It’s horrible that people have to be scared of claiming something they may be entitled to.
“I don’t have the energy to do it; it is long and dehumanising.”
And Maddy insists that if she does eventually receive support, she will not give up the things that bring her joy.
She said: “I’ll still go to gigs and festivals.
“I’ll still get my nails and eyelashes done, get takeaways when I can’t cook and dance when my body lets me.
“Getting disability support does not require you to surrender your right to have a life.
“People need to stop judging others.
“The whole point of PIP is to help people with personal independence so they can enjoy their lives.
“Most disabled people would hand back their benefits if they could hand back their disability.
“Disabled people are still allowed to have a bloody life.”
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