The term disability benefits always seems a bit of a contradiction in terms to me as thus far I have found few benefits to my disability. OK there is the no paying car tax and the Disabled Persons Rail Card not forgetting the parking space (and handy sign) outside the house (for which I waited a mere 3 ½ years). But frankly I would happily pay to tax the car and stump up the full train fare in return for being able to walk unaided! The parking space is however awfully convenient for unpacking the shopping…so yes what am I moaning about?
This current administration is picking off the vote winning saving initiatives in an attempt to avoid the economy plunging further into oblivion so after the bankers it’s benefit scroungers. Included in this latter category come cheating disabled people claiming non means tested Disability Living Allowance; and yes I am one of the recipients of this benefit.
The monthly payment is far from generous but it certainly helps me to continue working and paying tax. DLA comes in two parts: one for mobility and one for personal care. I am assessed as eligible for the higher rate for mobility and the medium rate for personal care. The progression of my particular condition is gradually increasing; since the last episode (flare up) in October I am able to do less competently and everything takes SO much longer. Frankly it’s tedious but hey ho.
It is hard to believe that many people would put themselves through the (very) long application form if they didn’t need it (or have someone to complete it for them). The first time I applied I did the form with my mother who also receives DLA for a far more diverse basket of afflictions than me. We were both driven to tears; no one should have to do this with their child.
Being proud middle class upright citizens we already started from the perspective of guilt. In the fortunate position of being employed we ‘happily’ (i.e. without questioning that it’s the right thing to do) pay our taxes for the ‘responsible’ elected government to spend on services for those who can’t afford to pay for them themselves. We believe in the welfare state and consider Bevan a visionary for establishing the NHS from which we all benefit.
But once you become a recipient of the welfare state it’s quite a different matter. Dignity and respect for the individual are aspirational values occasionally achieved rather than routinely delivered. The DLA form requires the applicant to answer hideously personal questions (example: How do you manage your periods? – the instinctive answer is ‘none of your ‘f’ing business!) and always assumes you have someone there to help. The assumption underlying the assessment seems to be the applicant is not competent and the solution is to relinquish control to a third party to do it for you. Wrong wrong wrong!
My diagnosis of MS (secondary progressive to be accurate) has not turned me into an incapable incompetent imbecile! Curiously enough behind the crutches I remain the same person; funny that, I would have told you that had you bothered to ask! So let me describe a typical day, of course there is no such thing as a typical day which is part of the problem when answering the DLA questions. A proud person with a modicum of dignity (that they wish to preserve) has a tendency to play things down; to show oneself in a positive light. Of course this isn’t an accurate picture so one is advised to describe your worst day. Hence if someone sees you on a better day one runs the risk of being accused of lying about your need for support. It’s a tricky one.
Any way back to my ‘typical’ day, which is in reality an amalgam of a number of days; please forgive me if you think this is disingenuous i.e. lying! As advised I keep active (lovely patronising phrase) and go swimming most week day mornings at 7 am. To do this requires rising at 6 am as my co-ordination is particularly shocking first thing. Some days I begin to think if it takes me any longer to get myself ready I shall be lucky to get out of the house before mid afternoon (and not every day)!
Putting on a close fitting swimsuit is especially challenging; if you imagine a caterpillar shedding its skin in reverse whilst standing up then you have some insight. Removing it in the public showers makes it quite a spectacle to behold no wonder my older fellow swimmers do this in the privacy of cubicles.
Making a cafetiere of coffee should be a cinch in comparison but I can turn this in something one requires insurance for – I probably should steer clear of hot liquids and anything requiring screwing (ladies please!). My spacial awareness has been severely impaired since the second episode i.e. I need to look at what I am doing as I am no longer able to judge how far things are away from me. I constantly knock things over and am usually covered in ‘oddly shaped’ bruises in unfeasible places!
These days I often use a crutch in the house as my balance is shocking and this is rather limiting. This morning carrying a basket of washing up and down stairs I nearly came a cropper as my centre of balance is now somewhere left of where it should be. Like a sinking ship I tend to list to one side if not concentrating! The result is having to launch myself forward often falling into the wall or ending up sitting on the floor. My dancing days are sadly long gone…
Two crutches outside the house are essential these days but not always practical; imagine taking a parcel to the Post Office or collecting the dry cleaning with no hands. Both of these tasks have been performed this week on one crutch and with gritted teeth. There is always the (distinct) possibility I will lose my balance and fall into the path of a moving vehicle; I choose not to think about this too often! Of course if I did my first instinct would be to apologise to the driver unfortunate enough to have run into me!
Planning for a meeting in London I went to the cash point to ensure I had enough money for taxis (I can no longer use the tube as the stairs are impractical and lifts not always available). Fixed price contracts are challenging when you have to factor in £60 taxis fares on top of the train. On a positive note they were only £20 this time! Clients are embarrassed when they realise especially when in the taxi with me; one to the extent we split the cost although it is clearly my problem not theirs.
After the cash point I thought I’d buy fish and chips on the way home; why I’m not quite sure as it’s not the kind of thing that ever goes nearly my taste buds. As it was the end of the day I was on two crutches and as I went (for the first time) into Harvey’s I misjudged the step and went head into the counter very nearly falling ‘a’ over ‘t’! Nice graceful entrance from the Spinster! The proprietor looked up laughing and said ‘mind the step’! Making a joke of it I laughed and he said ‘you’ll know next time’ when I commented on the sign on the door saying ‘mind the step’.
Some people would have been impressed by the portion size but after about 10 chips and half a pasty (fish having gone out of my mind after the tumble) I felt virtuous depositing the remainder in the green food recycling bin. Of course I may as well as saved the seagulls a journey and dumped the leftovers in the garden – I understand the food is spread out on a field in the Vale somewhere; quite a disgusting idea!
These are simply some of the challenges I face and add hours to my day. The disabled person needs to plan to make it through the day. I have someone to help me do simple things like change the sheets, clean the house, iron and this week replace the toilet seat! The limited energy I have is conserved for the tasks I can add value to without harming myself like earning a living so I pay taxes that I can then claim back as DLA!
I’m not making it up or scamming the state. It is important to me to keep up appearances; so yes I do use some of my personal care DLA to pay for things that facilitate this. Without the car I am severely limited as public transport is tricky on crutches and the timetable a tad limiting. Before assuming that DLA isn’t justified a closer look should be taken at the proportion of claimants who work and don’t claim any other benefits. Perhaps this use of government money is more of an investment as I pay FAR more tax and national insurance than I receive back.