Christine Tongue is a founder member of disability campaign group Access Thanet
I’ve always loved science fiction. As a child my heroes were Dan Dare in the Eagle comic and Yuri Gagarin, first man to go into space. If I had a few billion quid I might be up there with the other rich kids, walking in space.
But I don’t have that much money and walking anywhere without sticks is impossible so how come having loads of money gives you the chance to defy gravity?
Let me bring you down to earth with a bump.
It’s pricey being disabled!
Social and health services can organise some equipment, other things you have to get grants for, like power wheelchairs for outdoors, hoists, major house adaptations etc. But many things you have to pay for.
For me, I’ve had to pay for my mobility scooter, my stair lift, rails in my house, ramps in my garden to replace steps, shelter for the scooter, endless taxis as public transport is complicated, my spare crutches, shoes that I don’t have to tie laces for, hi vis jackets for scooting in the dark – it’s endless!
Hidden costs come as our circumstances change.
Rena has mobility and breathing problems and is deaf. She lives in a peaceful semi rural spot that used to be on a bus route. Her car driving partner died five years ago. The bus route changed. Her adapted bungalow is ideal for her needs but to get anywhere she needs taxis. A local charity subsidised a mobility scooter, now stuck in her garage while she tries to find a handy person she can afford who will mend the broken door.
She’s eaten through most of her savings and now as a pensioner is on a very limited income.
Mandy has motor neurone disease, She falls a lot and has had an alarm system fitted so she can summon help by pushing a button on a lanyard round her neck.
Here’s the list of her recent expenses:
“My stairlift cost £5,100
Two rollators (indoors & outside) £80 each
Grab rails £150
Chiropractor – to keep my joints moving – £35 every 6 weeks
Gardener £25 per hour when I can afford it!
Cleaner £50 per month
Emergency alarm from Age UK
You need a landline
£69 Registration (one off)
£66 key safe (one off)
£99 Installation (one off)
£203.52 Annual contract
It’s expensive but it’s reassuring for me and my family.”
Mandy wants to live independently and her family is ready to help her out financially, but she will need a powered wheelchair eventually and hoists which may be more expense than most families can afford.
Many conditions, like MND, leave you with impaired speech or exhaustion so just explaining what you need to organisations that might help becomes an overwhelming task.
Long covid has produced a lot of hidden disability.
I have a young relative, Jenny, who can’t go to school for more than a couple of days at a time and then has to stay in bed until she regains energy. Covid seemed to turn an athletic, outgoing, happy fourteen year old into an exhausted fifteen year old. Long waiting lists mean medical reports are taking months to produce, so rows with her school over attendance have been standard for a year now.
Jenny’s mother is now homeschooling her, which takes her out of paid employment, and takes her attention away from her eldest (doing A levels) and youngest, just coping with starting secondary school, not to mention her elderly parents.
So, I would happily sacrifice my space walking ambitions to give Rena, Mandy and Jenny a chance to walk anywhere at all without a struggle.
Hope the selfish billionaires are listening. Or perhaps the new government…..
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