Disability Top Trumps

I have been watching a lot of the Paralympics coverage on Channel 4. I am so pleased they’re making such a big deal about it and although I could probably argue till doomsday about the semantics of their coverage, it does seem to be making people sit up and take notice. I am hoping it can undo the negative press people with disabilities have been receiving for the past couple of years and show people that disability is very varied, and that each individual has something to offer even if they do need some support to achieve their aims. I have been fascinated with Lexi – the computer programme that explains to the viewer the differing categories of disability in each event and how those categories are made up of people who may be visually very different but have similar needs. In between watching I have been publishing my book to Kindle and the two things in conjunction made me think about those differences, even between people with the same disability, and how that translates to racing together, working together or even living together like two of the swimmers who have been competing this week.

When I was first diagnosed with MS and started walking around with sticks occasionally, I thought that being disabled was being part of a club. I thought there’d be a welcome, a sisterhood or kinship. I didn’t know then that disability was more than just one big homogenous lump! I had to learn that the category ‘disability’ is made up of individuals – people with varying disabilities but also differing characters, outlooks and even different feelings about being called ‘disabled’. I was shocked one day when trying to get across the road at a very busy crossing; I met a girl in an electric wheelchair coming the other way. I was struggling with two sticks and looked up and smiled – I thought we shared something, struggling in the mass of people and trying to get by. She looked at me and said:

‘Get out of my way Grandma!’

Some people are not arseholes because they are disabled. They are just arseholes, regardless. There are divisions and splits between different groups and categories of disability and there are differences in perception from the able-bodied community. In my experience, the public at large understand a disability they can see. Just like the ubiquitous wheelchair symbol, the public like to see an aid or adaptation that denotes disability. Anything will do really – a hearing aid, a stick, crutches, walking frame and the wheelchair. All of these mean you are automatically classified as disabled. Of course there are still those ‘what have you done to yourself?’ type questions where the individual is expecting to hear you’ve sprained your ankle or broken your leg. Then the awkward exchange where you either lie just to get out of there, or you tell the truth and watch them squirm.

There is a sort of disability ‘top trumps’ at play here. I don’t know if you remember top trumps but my brother and I used to play them all the time, so much so that we started to know which card in the pack automatically trumped others without checking. For those of you who don’t know about them, they are a pack of cards with a theme – cars, monsters, superheroes – and each card would have categories and a score for things like weaponry, speed, stamina or sneaky things like cunning. The cards were shuffled and dealt out to players and then turned over one by one. One player would pick a category where the score would ‘trump’ all the others and then would win those cards. The player with the most cards at the end of the game would win. A few years ago I bought my nephews the top trumps of farts and pooh, which lead to a very amusing Boxing Day afternoon. I am embarrassed to say I think I was more amused than they were.

Disability top trumps are a bit like that, but without the cards. I have lost count of the amount of times I have been stood in agony in the Post Office queue and seen them let someone in a wheelchair to the front of the queue. Outside I am smiling with everyone else, but inside I’ll be screaming ‘at least they’re sat down!!’ My pain condition means I can’t stand or walk for long periods without feeling like someone is pouring boiling hot water down the backs of my legs. If I am holding something like parcels for a long time pain radiates across my shoulders and lodges in the backs of my elbows. The best way to describe is like toothache, except it’s all over my body. Imagine a migraine in your lower back and you’re sort of there. However, there is no outward sign of this. On days where my balance is pretty good and I don’t need a walking aid I have to decide whether or not to take on anyway just so that people understand I’m struggling. So anyone with a walking aid trumps the person with a limp and anyone in a wheelchair trumps all! So what is it like when two people with disabilities live together?

I lived with my second husband for six years. We both had MS but his was primary progressive and mine was relapsing/remitting. He had many outward signs of disability, even when I first met him. He was a permanent wheelchair user, had difficulties with speech and upper body movement and had a blinding ability to push to the front of any queue. In many ways his disability completely trumped mine, but when you are living together permanently the niceties and politeness shown in the post office queue disappear quickly. Jez had no pain at all and took very few drugs so he would be the one to get up in the morning and make breakfast until I had taken my meds to reduce my pain and stiffness. People would stare at us when out shopping, not just because they were bloody rude, but because often I would be walking along next to a man in a wheelchair who was carrying all the bags. People would look at me like I was the laziest cow they’d ever seen. Of course as he got worse the tables turned and I found myself getting out of bed at 6am every morning to start a morning routine and in the years until he died his needs trumped anything my illness had to offer. Even to the extent that when I collapsed with a gall bladder attack I realised it would be impossible to have the gall bladder out and carry on with the routine at home. Colds, sniffles and stomach upsets were trifles next to a man who couldn’t breathe or feed himself. Yet, on some days I had to play the trump card of the bad back. One morning I had a twinge in my lower back as I was hoisting my husband out of bed. It was a Sunday and we didn’t have care on a Sunday so we could spend mornings together without interruption. Of course this meant I did the two hour care routine alone but we’d managed to get a good system going and it didn’t usually bother me, considering I could spend the rest of Sunday on my backside reading the papers and watching the rugby. On this day though the twinge was a bit sharp. I’d been sleeping some of the night on our sofa bed because Jez’s leg spasm was keeping me awake during the night. While Jez was in the bathroom I started to bend down and fold the bed back up. I was fine until I stood up, my back went and I fell back down onto my knees. I stretched out on the floor to reduce the spasm, but nothing was working. I managed to stand up and carry on the care routine. When Jez was finally up and in his wheelchair I fell back into the bed he’d just come out of and couldn’t move. This was one day when my disability had to come first – it forced its way to the front of the queue. After breakfasting on crisps Jez decided we needed help and rang my parents to tell them he’d ‘broken his wife’. They took to two hour trip to rescue us both and got a very nice doctor to come out and give me an injection into my back.

It also felt weird when I was awarded a Disabled Student’s Allowance and had a library assistant, who had a limp. I felt a complete prat following someone, visually more disabled than I am, round the library and loading her up with books and photocopying. Invisible disability like mine rarely falls into proper categories – the social model of disability is used for this type of assessment and the assessor looks for the ‘lack’ that can be mitigated by either equipment, money or an assistant. My disability fell more easily into the realm of sickness than impairment – no amount of equipment or money could help when I am in relapse and completely unable to get out of bed. How do you mitigate muscle fatigue, chronic pain, or sudden blurred vision? It is impossible to measure or quantify. I have been referred to by people with ‘real’ disabilities as a fake or phoney ‘spaz’ – people are naturally suspicious of something they can’t see. I have to ask people to have faith in me – to accept that how I describe it, is how it is.

Now I live with a ‘normal’ and this brings its own difficulties. It is easy to fall into a lazy way of living, where my illness trumps everything else. There are times when I take what my other half does for me for granted – every morning he brings me a cup of tea and my meds so I can stay in bed until I feel I can get up, he does all the fetching and carrying, errand running and all those little nagging jobs around the house. I have to make sure I am not the only person allowed to be ill in the house. When he had a minor operation and got an infection I made sure I looked after him – if I am having a good spell at times like this I take over everything so he knows that I appreciate all those times he’s done it for me. So, a chronic illness like mine always trumps the able-bodied, but is looked upon as trifling by those with severe disabilities or impairments. Acute illnesses in the house like flu, food poisoning or viral infections have to come first, but if you have a headache or a cold you’re on your own. My day to day chronic difficulties have become our normal – but an acute episode of illness can be so severe it trumps everything. It may be strange, but it works for us. I wonder what Channel Four’s Lexi would make of our categorisations?