Christine Tongue is a member of disability campaign group Access Thanet
My friend Mandy recently had a disabled person’s nightmare. She spent two terrible days getting promises of help that didn’t materialise.
She had to go to London for a diagnosis of her rare condition. She falls over a lot, is wobbly on her feet, so uses a three wheel rollator for balance and a stick. She gets tired easily, slurs her speech and can just keel over when her concentration lapses.
She booked her rail ticket and asked for disabled help, which the train company makes a big deal about offering. For her two days of testing the hospital booked her into an “accessible” room in a big chain of hotels.
She texted me at every stage so I felt as if I’d done it all with her.
First hazard – the disabled help on the station went wrong: “Lovely chap didn’t know I had to get in the disabled access carriage as rollator too wide for the aisle of other carriages. Fast train driver frantic about being held up in rush hour.”
Mandy ended up in a normal carriage blocking the exit with her rollator and bag.
“Ticket collector kindly rang ahead to tell the London station staff which carriage I was going to be in as opposed to the one I was supposed to be one.”
“But an hour later I arrived and nobody was there to meet me. I got off (with help from other passengers) met nice girl halfway down the platform — very apologetic”. She’d been given the wrong carriage.
Arriving at the hospital Mandy was instantly whisked into a wheelchair —which was thoughtful — but she was separated from her bag and rollator. Like most disabled people if you lose sight of your mobility aid you panic. It feels like your legs have been cut off. But Mandy didn’t have time to make a fuss and had to get on with her tests.
The hospital did wonderful science on her and she did end up with a precise diagnosis and a plan going forward. But that didn’t give her time to eat or get a cuppa from 8am to 2.30pm.
“I’ve bunked off” she texted. Once she could find her rollator she escaped to her hotel for a drink and a lie down.
There she discovered that accessible means wide doors, grab rails, raised toilet but no chance of a shower as this was over the bath and like many disabled people, Mandy can’t climb into baths!
“It’s for one night. I’ve got a toasted sandwich and ice cream from room service. I can wait for a shower!”
Next day, no breakfast as the hospital wanted her at 7am, and she suddenly found she couldn’t see the specialist she needed to see. His registrar turned up instead. “I’ll wait till he comes in,” says my determined friend. Six hours in the waiting room and she’s told she can see him the next morning. The hospital books her into another hotel and sends her there in a taxi.
New hotel, new accessible room. Same problems. Expensive room service, and a shower over the bath! So, another night of strip washing and Mandy is thinking how scandalous it is that two separate well-known hotel chains— who make big claims about accessibility — don’t really understand what disabled people need.
The next day things went smoothly, but she got home shattered. Not surprising. It’s exhausting doing this stuff on your own, having to look out for yourself and make a fuss constantly about what’s not working.
But what’s much worse is hearing promises from big organisations and finding they don’t mean what they say. It’s like “greenwash” — you know, when big companies pretend to be worried about the environment when really they’re only trying to make themselves look good — except this is them pretending to be disabled friendly when really they’re just trying to improve their image.
What’s a good word for this nasty corporate game? “Cripwash” maybe. Sounds distasteful? That’s because it is. Send me your suggestions.