(^58) Health The Mail on Sunday^ September 1^ •^2019
Barred from
disabled loos,
the MS patients
who don’t look
sick enough...
Ayres, 25, from Plymouth, diag-
nosed 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 ask-
ing to use an accessible toilet.
‘Staff said they were only for peo-
ple 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 condi-
tions 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, dis-
crimination 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 chang-
ing 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 nec-
essary 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 dehy-
dration 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 Tam-
worth, 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-chang-
ing facilities. Changing Places toi-
lets 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 com-
mon and nothing short of a dis-
grace. 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 legis-
lation to make these toilets manda-
tory in new public buildings.’
The Government is currently
consulting on plans to boost the
number of these toilets available to
severely disabled people.
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dignity
for the
disabled
S
EARCHING desper-
ately 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 con-
dition that causes extreme weak-
ness in one side of your body.
Your right arm is stuck and lift-
ing your leg to remove your under-
wear is impossible. Added to this,
chronic fatigue makes even the
most ordinary of days out exhaust-
ing. And such is your illness that
the urge to go comes suddenly.
This is a scenario faced regularly
by Sophie Reynolds, 23, from Col-
chester in Essex. She was diag-
nosed 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 toi-
let 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.’
thoUsaNDs F aCe
Dis CRiMiNatioN
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 dig-
nity for the disabled, we spoke to
several women who have faced
astonishing prejudice.
Podcaster and blogger Jessie
Ace, 28, from Swadlincote, Derby-
shire, 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
‘NO ONE BELIEVED ME’: MS sufferer Sophie with her dog Barney
By Sally Wardle
THE TOE STRETCH TO
SOOTHE a CHing fEET
WiTH MaRia M aL-ROUBi
Try
THIS
1
PeoPLe often worry about
sitting too much, which is well
known to be bad for posture.
But spending too much time
on your feet can take its toll
too. And most of us neglect to
stretch our feet properly.
After a long day, I find this
simple exercise really releases
the tension in my toes. try
doing this foot workout once a
day to begin with and see if it
helps relieves your aching feet.
- take hold of two toes next
to each other on your foot.
Gently pull them in opposite
directions and hold them in
that position for two seconds.
repeat this exercise for the rest
of your toes.
2. Get into a kneeling position
on the floor. tuck your toes
underneath your body, so they
are bent and facing forwards.
3. Put as much weight as you
can on to your toes to give
them a full stretch. You can
place your hands on the ground
if it helps you balance.
2
RUSSELL SACH