Why Paula with rare BVL breathing disorder does NOT want Bethnal Green’s ‘Liveable Streets’ traffic barrier scheme
PUBLISHED: 18:34 06 September 2020 | UPDATED: 10:43 07 September 2020
A woman thought to be one of only three sufferers in Britain with the mild form of BVL syndrome has joined the call this week appealing for a halt to a traffic a barrier scheme preventing her reaching her GP without a mile-and-a-half detour.
Paula Wakelin is one of 2,000 residents in Bethnal Green backing a petition to stop plans to install yet more barriers around Barnet Grove and Columbia Road flower market following the through traffic ban along the B118 Old Bethnal Green Road.
The former Royal London Hospital speech therapist ironically has been struck down with the debilitating ‘Brown Vialetto van Leo’ congenital neurological condition that makes speech and breathing painful, damages her hearing and makes walking painful and virtually impossible. It’s similar to motor neurone disorder.
“I’m very weak and really do need the car, not the barrier,” she explained. “All my breathing is wasted and there’s no chance of a cure.”
Husband Ian has had to give up his job to be her full-time carer.
He told the East London Advertiser: “The council wants barriers to stop through traffic. But we don’t get any here. There’s nothing. It’s empty out there. We need the car and access in all directions.”
He takes Paula each week on their three-minute drive to the GP’s surgery, but a barrier in Barnet Grove would mean having to go a mile-and-a-half out along Hackney Road, Cambridge Heath Road and finally Bethnal Green Road to reach it.
“To get there in the wheelchair would be horrendous,” Ian adds. “Paula has a machine to help her breath in hot weather, like Covid patients, forcing air into her lungs.”
Paula also has appointments at the Royal London in Whitechapel, the “wrong side” of the proposed barrier. She can’t walk or ride a bike.
Her case has been brought to light by Amnesty International UK’s former head Linda Wilkinson, one of Paula’s neighbours, who launched Bethnal Green Streets for All Facebook campaign with 4,000 followers against the Liveable Streets programme.
It led to the petition calling on Tower Hamlets Council for a temporary halt.
“The disabled like Paula will be disproportionately affected,” Linda Wilkinson told the Advertiser. “Public funds, our money, are being thrown away without accountability to the people who live in these streets.”
The backlash in Bethnal Green follows a statement last week from a national campaign for more barriers that quoted two residents.
“We are seeing a denial of democracy,” Linda insists. “It’s a complete dereliction of duty to the public by clueless councils hell bent on chasing a nirvana (mythical place of peace and happiness) which doesn’t exist.
“The 2,000 names on a petition for a moratorium in Bethnal Green I suppose is of ‘no note’, nor the thousands who have protested in Islington about destruction of businesses and ability for the disabled to move about, nor the judicial reviews which thousands in Waltham Forest took to halt these schemes.”
She added: “I suppose if we all get on our mythical bikes, all will be well.”
Paula Wakelin can’t do that, with her progressive BVL syndrome, a rare neurological disorder first described in 1894 and later analysed in 1936 and 1966.
Only 58 sufferers worldwide in the past 100 years are known to have had the milder form of BVL, with just three in Britain including Paula.
The milder form is not immediately terminal, but severely restricts her breathing, speech, hearing and mobility for the rest of her life.
If you value what this story gives you, please consider supporting the East London Advertiser. Click the link in the orange box above for details.