"Nobody believed me": MS patient Sophie with her dog Barney
A desperate search for the toilet in a busy shopping mall or an elegant concert hall is a moment that arouses panic.
Eventually you find it, only to find a line, and you stay in a cross-legged position and pray that you will not fall short. But imagine that you also suffer from a paralyzing 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. In addition, chronic fatigue makes even the most ordinary days tiring. And so is your illness that the urge to go comes suddenly.
This is a scenario that Sophie Reynolds, 23, from Colchester in Essex regularly faces. She was diagnosed with multiple sclerosis – a neurological disorder that affects the nerves and can cause severe fatigue and pain – at the age of 15.
On Monday evening she was among the 40,000 people who gathered in Ipswich to watch Ed Sheeran's latest performance on his world tour.
But when she approached a disabled toilet, her body went down and she fell. Security staff guarding the toilet came to investigate, but assumed she was drunk.
"They thought I didn't like it or used drugs," she says.
Sophie was forced to prove her handicap using a card that says she has MS. "But even when I went to the bathroom, it didn't seem that they believed I was disabled," she admits.
This was not an isolated incident. The sales assistant, whose dog Barney calms her during severe attacks of symptoms, says: "I often don't get access to 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 person instead, but the staff said I was not allowed because I was not disabled. People do not expect a young person to have a disability. & # 39;
On Monday evening, Sophie was among the 40,000 people who gathered in Ipswich to watch Ed Sheeran's last performance of his world tour
THOUSANDS OF FACE DISCRIMINATION
Sophie is not alone worrying. According to the charity organization of the MS, up to 100,000 MS patients can be discriminated against and therefore have no access to facilities for the disabled. Disabled toilets are often located on the ground floor or at the entrance, vital for people who have difficulty walking.
As part of the ongoing campaign of The Mail on Sunday to fight for dignity for the disabled, we spoke to several women who were confronted with amazing prejudices.
Podcaster and blogger Jessie Ace, 28, from Swadlincote, Derbyshire, was diagnosed with MS six years ago and now suffers from severe fatigue, weakness and muscle spasms. In a London bar in May she was unable to walk down to the toilets – but she could not use the disabled on the ground floor by staff.
"I told him that my legs were so weak that I couldn't come down and down the stairs without collapsing and embarrassing myself," she says.
"But he didn't want me to use it. I said, "What do you want? Do you want to see my MRI scan?" I'd rather run the risk of collapsing on the stairs than having to go through situations like that again. "Amelia Ayres, 25, from Plymouth, diagnosed in 2014 with MS, struggling to walk and may be affected by the urge to go suddenly, last year she was challenged in a cafe after she had asked to use an accessible toilet.
According to the charity organization the MS Society, up to 100,000 MS patients can be discriminated against, which means they have no access to facilities for the disabled.
"The staff said they were only for people with disabilities," she explains. "I said that I have MS and that I had to go to the toilet urgently, otherwise I would get wet. They didn't believe me. I was treated as if I had asked to borrow a million pounds. & # 39;
Genevieve Edwards, of the MS Society, says: "Many people with MS have incontinence problems and suddenly need access to a toilet. We have heard of many people who have stopped using an accessible toilet because they do not look handicapped. & # 39;
And it's not just MS patients who are confronted with this problem. According to a report from the Royal Society of Public Health in May, a lack of facilities is a concern for many with diseases that affect the prostate, bladder, and bowel. More than two fifths of people with health problems remain home-bound for fear of not being able to access a toilet.
TOILETS NOT SUITABLE FOR PURPOSE
Further investigation by The Mail on Sunday shows that, with regard to access to toilets, discrimination against staff is only one of many obstacles.
Changing the handicap group pressure Consortium says that most facilities for the disabled are not suitable for the purpose.
About 250,000 people have serious disabilities and need specially designed facilities. This includes space for up to two caregivers – needed to help them undress – and a changing couch and hoist, an essential piece of equipment for thousands as it helps caregivers lift them out of a wheelchair.
Currently there are 1,300 of these in the entire country. But Muscular Dystrophy UK, co-chair of the Changing Places Consortium, says this is not enough.
Campaigners ask for fully accessible toilets, with all necessary equipment, in every public building under construction.
They call these toilets "Changing places". Laura Burge, of Muscular Dystrophy UK, says: "We know that many disabled people suffer from dehydration because of the fear of finding suitable toilets while on the move. Others have even fitted catheters when this is not particularly necessary. & # 39;
Kim Whapples, 48, from Tamworth, was so annoyed when she tried to find toilets suitable for her severely disabled seven-year-old daughter Ruby that she spent £ 5,000 on a campervan that they could take with them on a day out.
Ruby is incontinent and needs to be replaced every 90 minutes – and full-time caretaker Kim has lost count of the times she had to lay her down on public toilet floors.
"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 on a dirty toilet floor that most people don't even walk on. The first time I had to do it to change her, I cried. & # 39;
Given her age, Ruby is too big and too heavy to use the baby changing facilities. Changing places toilets offer a bed where they can be changed hygienically.
Clare Lucas, Head of Policy at Muscular Dystrophy UK, adds: "Such stories are far too common and nothing less than a shame. A quarter of a million people are denied the fundamental human right of daily toilet use because there are not enough changing places.
"Being changed on a dirty floor is not a reasonable alternative. We want all major public locations to install a Changing Places facility and will insist on legislative changes to make these toilets mandatory in new public buildings. & # 39;
The government is currently discussing plans to increase the number of these toilets for the severely disabled.
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