Stopping Caring
In her regular column for Able magazine, Jane Muir shares her ongoing experiences of life with – and without – her disabled son.
I may be a literacy teacher with a degree in modern languages, but the letters I receive from the benefits agencies leave me struggling. Possibly they constitute some kind of arcane computerised poetry. Although there are recognisable sentences with full stops and capital letters, and these sentences mimic the English language, the meaning remains elusive, with juxtaposed contradictions and staccato and repetitive choruses. The last correspondence from them to me was 25 pages long. Oh bliss! One line even states quite clearly (I think) that my son is a ‘non-dependant’….
The booklets I am sent at the beginning of each College holiday require breakdowns and proofs of my entire financial existence, meagre as it is. One would think that me and the benefits were ‘a pair of star-crossed lovers’ bogged down in a mire of misunderstanding, deep rooted suspicion and mistrust. At the end of it I am none the wiser, and possibly neither are they – the problem seems to be my ‘fluctuating earnings’ – except that I think I get less money overall if I work, and certainly more hassle. I was wondering if I should give work a miss next year – but then I would not only be doing myself out of a meaningful aspect of my life, but also denying someone else a job at the benefits office – these forms and letters must surely be taking up a good few hours of someone’s time and I wouldn’t like to think that, right in the middle of a recession, I was creating job loss for two!
Of course it would be simpler if I could just take full time work and sign off, but I can’t. I still need to be a full time carer for an average of 20 weeks of the year, and I do need a bit of free time – caring 24/7 has left me older, more easily tired and with less energy. Last term, there was an overlap week where I found myself teaching just five hours during a week when Alistair was home with the flu. This meant that I lost my Carers Allowance for that week – even though I was still caring intensively for the other 163 hours! We do have direct payments to buy in some care, which is great, but employing and organising carers is still time consuming and not always straightforward.
On the other hand, I am getting used to having two alternating lives. There’s the one that is just mine, where I can wear frocks if I so choose, and miss meals, and be relentlessly selfish. In that life, I can go to late night films, or whisk down to London to see a friend at a moment’s notice or cycle up to the woods to listen to the dawn chorus on a whim – and not worry about having a hangover! In the other life, I am in practical hardwearing clothes – do anyone else’s jeans get holes from kneeling on jagged non slip surfaces on van floors and bathrooms? I have to get up and operate hoists in the night, which leaves me demolished the next day, and maintain endless pieces of equipment and be terribly, terribly organised – making daily phone calls to get stuff repaired, arrange appointments and try to work out how to get grants/funding for the future, as well as organising the entire daily life of a 19 year-old boy who can do very little independently.
I am grateful that we live in a welfare state with a National Health Service; I constantly remind myself how lucky we are, because elsewhere as a single parent with a severely disabled child we would have been up the proverbial creek without a paddle. However, the only literary text that comes close to describing what we go through in administrative red tape is Kafka’s The Trial. I wonder whether the new Government will make this situation better or worse for carers?
Meanwhile, I am told that due to cuts, Alistair is unlikely to get a grant from the education authority to continue further education in the performing arts for young people with disabilities at the Orpheus Centre. So he is supposed to sit at home and watch telly all day? Or what?
Maybe the government will try to get him to work – after all, they have provided enough courses in ‘Skills for Living and Working’ over the years. Here is his ‘Wanted’ ad:
Sociable, cooperative, good looking young man, keen interest in music and the arts, easily bored, would like to travel, needs job. No GCSE’s, limited communication or hand function, wheelchair user, 24 hour 1:1 intimate help essential. Computer literate: typing approximately 1 wpm. Any salary accepted as no concept of money.
Maybe he could go for chairman at Goldman Sachs, but what would that do to his benefits?
