Words and pictures by James Hopkirk
In his latest article, James Hopkirk tells us about Toni, who got in touch after reading some of his posts here on the Brixton Advice Centre website. James told us that she got in touch because of the appalling treatment she’d suffered at the hands of the Department for Work and Pensions and wanted other people to know what she’d been put through. You can find out more about how James and BAC are collaborating here
Toni lives in Brixton with her three chocolate Labradors – Macy, Harry and Dollie. They can be a handful at times, but they’re the loves of her life. She says she’d be lost without them.
Toni grew up with her brother and two sisters in a small Staffordshire mining town. Her father was a violent man. When she was 15 he dragged her down a flight of stairs by her hair and repeatedly stamped on her back.
Years later, when her back pain became unbearable, an MRI scan revealed multiple crush fractures to her spine. But it also uncovered a series of other profound back disorders, including arthritis, degenerative disc disease, sciatica and lateral recess stenosis.
The consultant told her she had the back of a 70 year old. She was 29.
These conditions cause her constant pain – but her spine is only part of the problem. In 1997 Toni was diagnosed with persistent viral fatigue, which developed into ME. This leaves her exhausted, unable to concentrate and suffering frequent migraines.
A separate condition called endometriosis led to eight unsuccessful laser surgeries, before she was forced to have her womb removed at 32. The operations left her with extensive internal scars that frequently tear, causing her further pain.
In 2005 her GP confirmed that she had arthritis in her hands and wrists, as well as her back. Her body simply does not work as it should.
Today, aged 49, making even short trips is a major undertaking. Most of the time she’s housebound – a dog walker takes the Labs out.
Her local shops are just over a kilometre away. According to Google Maps it should take 30 minutes to walk there and back. For Toni, it involves two hours of prep and a three hour round trip. Painkillers, strong coffee, energy drinks, stout shoes and a saddlebag on Harry’s back make it possible. She only attempts it about once a month these days.
Toni can still walk, albeit unsteadily, so she doesn’t use a wheelchair. For her it’s a symbol of defeat. But the arthritis in her wrists is so bad now that even a stick is a problem.
The journey is treacherous, filled with obstacles that an able-bodied person would barely notice. Litter, puddles, tree roots, uneven paving stones, curbs, pedestrians and cyclists have all caused her to stumble and fall.
When she’s walking, hunched and staring straight down, Toni’s world is limited to what’s in front of her feet. She says she sometimes wishes she had eyes in her toes.
Aside from the pace she walks at, Toni shows no outward signs of disability. Once, she tripped and fell in front of a police car, but they didn’t come to her aid. She assumes people think she’s drunk.
The 2011 Census revealed that there are 9.4 million people living with disabilities in the UK, but the Office for Disability Issues estimates that just eight percent use wheelchairs or have other externally visible impairments.
Pedestrians are the toughest obstacle of all. When she reaches Brixton Road, crowds are unavoidable.
People get frustrated by the speed she walks at and push past her. Bicycles, buggies and wheeled bags knock her as they pass. The throng blocks her view of potential hazards. She’s constantly forced to stop and start, which she finds exhausting.
Toni used to drive to the shops – but in 2014 an administrative error by the Department for Work and Pensions meant her disability benefits were cut and blue badge revoked.
After a gruelling fight her benefits were finally reinstated almost a year later – but her mobility allowance has still not been restored which means she’s no longer eligible for a blue badge. Without them, she can’t afford to run a car, and without the mobility allowance she isn’t eligible for Dial-a-Ride membership.