‘No one believed me’: MS sufferer Sophie with her dog Barney
Searching desperately for the toilet in a busy shopping centre or heaving concert hall is a panic-inducing moment for the best of us.
You eventually locate it, only to find a queue, and are left standing cross-legged and praying you don’t get caught short. But imagine if you also suffer a crippling condition that causes extreme weakness in one side of your body.
Your right arm is stuck and lifting your leg to remove your underwear is impossible. Added to this, chronic fatigue makes even the most ordinary of days out exhausting. And such is your illness that the urge to go comes suddenly.
This is a scenario faced regularly by Sophie Reynolds, 23, from Colchester in Essex. She was diagnosed with multiple sclerosis – a neurological condition that affects the nerves and can cause severe fatigue and pain – at the age of 15.
On Monday night, she was among the 40,000 people who gathered in Ipswich to watch Ed Sheeran’s final gig of his world tour.
But as she approached a disabled toilet, her body gave way and she fell. Security staff guarding the toilet came over to investigate but assumed she was intoxicated.
‘They thought that I wasn’t with it or had taken drugs,’ she says.
Sophie was forced to prove her disability using a card that says she has MS. ‘But even when I went in the toilet, it didn’t seem like they believed I was disabled,’ she admits.
This was not an isolated incident. The retail assistant, whose dog Barney calms her during severe bouts of symptoms, says: ‘I am often denied use of the disabled toilet because people think I’m drunk.
‘I was in a bar where you have to walk upstairs to the toilet, which I can’t do. I went to the disabled one instead but staff said I wasn’t allowed because I wasn’t disabled. People don’t expect a young person to have a disability.’
On Monday night, Sophie was among the 40,000 people who gathered in Ipswich to watch Ed Sheeran’s final gig of his world tour
THOUSANDS FACE DISCRIMINATION
Worryingly, Sophie is not alone. Up to 100,000 MS sufferers could face discrimination that prevents them from accessing disabled facilities, according to charity the MS Society. Disabled toilets are often on the ground floor or near the entrance, vital for those who struggle to walk.
As part of The Mail on Sunday’s ongoing campaign to fight for dignity for the disabled, we spoke to several women who have faced astonishing prejudice.
Podcaster and blogger Jessie Ace, 28, from Swadlincote, Derbyshire, was diagnosed with MS six years ago and now suffers bouts of severe fatigue, weakness and muscle spasms. In a London bar in May, she was unable to walk downstairs to the toilets – but was stopped from using the disabled one on the ground floor by staff.
‘I told him my legs were so weak I couldn’t get down the stairs and back again without collapsing and making a fool of myself,’ she says.
‘But he did not want to let me use it. I said, “What do you want? Do you want to see my MRI scan?” I’d rather risk collapsing on the stairs than having to go through that sort of situation again.’ Amelia Ayres, 25, from Plymouth, diagnosed with MS in 2014, struggles to walk and can be struck with the urge to go suddenly. In a cafe last year, she was challenged after asking to use an accessible toilet.
Up to 100,000 MS sufferers could face discrimination that prevents them from accessing disabled facilities, according to charity the MS Society (stock image)
‘Staff said they were only for people with disabilities,’ she explains. ‘I told them I have MS and urgently needed to use the toilet or else I would wet myself. They didn’t believe me. I was treated as if I’d asked to borrow a million pounds.’
Genevieve Edwards, of the MS Society, says: ‘Many with MS have issues with incontinence and will need access to a toilet suddenly. We’ve heard from lots of people who have been stopped from using an accessible toilet because they don’t look disabled.’
And it’s not just MS sufferers who face this problem. According to a report in May from the Royal Society of Public Health, a lack of facilities is a worry for many with illnesses affecting the prostate, bladder and bowel. More than two-fifths of people with health conditions stay housebound for fear of not being able to access a toilet.
TOILETS THAT AREN’T FIT FOR PURPOSE
Further investigations by The Mail on Sunday reveal that, when it comes to accessing toilets, discrimination from staff is just one of several barriers.
The disabilities pressure group Changing Places Consortium says most disabled facilities are not fit for purpose.
About 250,000 people have severe disabilities and need specially designed facilities. This includes space for up to two carers – needed to help them undress – and a changing bench and hoist, an essential piece of equipment for thousands as it helps carers to lift them from a wheelchair.
Currently, there are 1,300 of these across the country. But Muscular Dystrophy UK, which co-chairs the Changing Places Consortium, says this is not enough.
Campaigners are calling for fully accessible toilets, with all the necessary equipment, in every public building under construction.
They call these ‘Changing Places’ toilets. Laura Burge, of Muscular Dystrophy UK, says: ‘We know many disabled people suffer dehydration due to fears over finding appropriate toilets when they are out and about. Others have even had catheters fitted when it’s not particularly necessary.’
Kim Whapples, 48, from Tamworth, became so exasperated trying to find toilets appropriate for her severely disabled seven-year-old daughter Ruby that she spent £5,000 on a campervan, which they can take with them on days out.
Ruby is incontinent and needs changing every 90 minutes – and full-time carer Kim has lost count of the times she has been forced to lay her down on public-toilet floors to do so.
‘It’s soul-destroying, especially if you don’t have a mat with you,’ she says. ‘It’s so hard to put the most precious thing in the world to you on a dirty toilet floor, which most people wouldn’t even walk on. The first time I had to do it to change her I cried.’
Given her age, Ruby is too large and heavy to use the baby-changing facilities. Changing Places toilets would offer a bed where she can be changed hygienically.
Clare Lucas, head of policy at Muscular Dystrophy UK, adds: ‘Stories like these are far too common and nothing short of a disgrace. A quarter of a million people are denied the basic human right of using the toilet daily because there aren’t enough Changing Places.
‘Being changed on a dirty floor is not a reasonable alternative. We want to see all large public venues install a Changing Places facility and will push for changes to legislation to make these toilets mandatory in new public buildings.’
The Government is currently consulting on plans to boost the number of these toilets available to severely disabled people.