There’s a figure of £550 going around that that is how much more a disability costs every month (from Scope) with suggested tips in the Guardian on how to minimise spending this week. I do not know how they arrived at the figure but the ‘costs’ are not just monetary. However I shall start adding up my own extra costs just from this week and go on from there to unpack that figure and show how it adds up – as a wheelchair user with post polio syndrome ( a type of chronic fatigue)
I had to stay in my flat on Monday so that my power wheelchair can be sorted – the problem was with some bearings in the castors. I had no idea what was needed or how long it would take although the wheelchair repair people promised me they will try to bring it back the end of the day, latest. It was worrying because I had to transfer to my self propelled chair – something I had not done since 2010 and certanly not since I had an accident and fractured my knee. Also worrying because I would be on my own for most of the day. For busted bearings on one castor wheel – they said it would be better to change all the bearings to be on the safe side – it was slightly under £200 including the call out charge.
Now a non disabled person might say – ‘but I would have to maintain my car too if I had a vehicle’ – the difference is that I cannot move without my wheelchair – they serve as my legs. I cannot wait for repairs until necessary, I cannot afford to break down somewhere and call the AA when it happens! Imagine the scenario of breaking down and getting stuck on the underground or stalling while crossing the road somewhere on my own…the logistics of getting home even if I manage to negotiate to street level to hail a taxi. Of course you can buy insurance that can cover the costs but it is not like AA where they would actually send you a rescue vehicle! So you can say that one is held at ransom – it is a fear and a recurrent nightmare that one gets stuck and stranded. If you paid out for Fish Insurance Mobility Extra Insurance, the charge is only £107 annually and if you re not more than 10 miles away from home, your trip home by taxi is covered.
People in my residential flats were blocked in this morning when the garage gate did not function according to the fobs. They were left fuming by the fact they couldn’t get to work, maintenance engineers were not around and the caretaker is on holiday. I told my friend and flatmate ‘welcome to my world’. At least they can abandon their car and take public tramsport or catch lifts. People in wheelchairs do not have the choice if the lifts break down – as it has happened a few times. I had to call to cancel meetings or trips. Its not so bad if I was in my flat but I was once next door and I couldn’t take the lift to go home! I also double check to make sure that I have my credit card on me in the event of me needing an accessible hotel room being unable to access my first floor flat. Non wheelchair users can find refuge at a friends if ever the need for a bed but i have very few friends who have accessible homes let alone one with an accessible loo!
I had to book hotel rooms for conferences next month. As a wheelchair user I found I could not take advantage of the discounted offers because that would not guarantee an accessible room – I had to make a telephone booking to the hotel itself, after ringing around to ask if they had availability and if the room was really accessible or just ‘adapted’. And of course I had to book two tickets because it is always safest to travel with a companion in the eventuality of mishaps. I find it difficult without my adjustable bed and to make sure I can get to plugs to charge my wheelchair in the hotel room. And of course the costs double because there are two of you in the trip.
But if we were to count the extra living costs, this week the knuckles and joints on my right hand are stiff and hurt when any pressure is placed on them so I found it difficult to cut up food and cook – lifting any saucepan or plates was painful so I ate out quite a bit. Even microwaved food requires being lifted out and washing up needs to be done.
Some one will quip ‘ah but you get the DLA (disability living allowance), thats what its for’. True I do get it, other disabled people use it to pay Motability, to enable them to get a car or a power wheelchair. I use it to fund adaptations to my flat. And I am still paying every month. It also helps me to pay for an adjustable bed so that I can stay at my daughters flat when I visit her (which was £700).
Having PPS mean that I am rather susceptible to cold and there are extra heating costs, not to mention all the extra electrical charges for charging up the wheelchair every night, my bed and my automatic door.
But the invisible costs are those that cannot be accounted for on a spreadsheet. But that might be for another blog – its rather late now.