A recent trip north to see my family, to say hi to Mum, finds her ensconced in her slippers, reading a not very good book – which she is determined to finish – and the rest of my family hard at work on household chores or employment elsewhere. A big house takes a lot of tending.
To join in the spirit of the gathering, I have also brought my work, which means that after an amazing two-hour drive – through torrential rain between Edinburgh and Kinross and then out onto quiet roads in bright, calm sunshine – we all now sit in companionable peace, not needing to be entertained but all pleased and doing our own thing. I am glad to be able to report that Mum is settled, and with her new glasses and finally sleeping well, she looks and seems better than in about two years. Come to think of it, since before my father died, and before all those notaries – my mother, in jest, refers to them as notary 1A, 1B, 2A, 2B, 3A and 3B… – started variously raising our hopes and dashing them.
In the legal morass there have been several heroes and heroines – thank God! – foremost among them my eldest sister, and my mother, who has borne it all, through intense grief, with courage and her trademark sardonic stoicism.
It is wonderful to be here now, and to reflect that all is growing into new beginnings, just as the Spring is about to take hold. I have high hopes for 2018, and not just because all our legal troubles are – hopefully – coming to a close, but because, unexpectedly, we have all weathered them so well and come through stronger, more peaceful and more kind with each other. For which I am so grateful.
Since my father died – in March 2016 – and my brother died in October 2016 – my life, the last two years of my gentle, unassuming life has been held rather in abeyance by legal minefields – estate in three countries, family in three countries, and notaries who prove reluctant to communicate, listen or act with what I would call dispatch. Thankfully, all that – all that, and so much more – is almost – finally – nearly finished. So now, maybe I can build new memories of my father and brother, unencumbered by the pain of legal decrapitude.
It is really quite sad to reflect that the last two years have been blighted by thoughts of notaries, clerical requirements, your word against mine, apostilles, trips to Belgium – at least a dozen – and endless phone-calls interspersed with pained waiting.
I have learned a very great deal from the entire process: what really matters, how to wait, how to listen more fully and be present to the gifts in every situation, how to deal with other people’s confused agendas, how to … live well while all is in abeyance and threatening to unravel. These are not gifts I expected to receive from the confusion that first greeted us, and I am grateful for the opportunities to learn. But…
I am also grateful that now, my sisters, my mother and I can grieve. At last. And say adieu properly, remembering my family fondly.
Time and tide wait for no woman…. Just occasionally – Not at all often, I am pleased to note – I encounter comments about my book, ‘Trapped’ along the lines of ‘miserable book, miserable git’ or words to that effect. Not that I mind – different strokes for different folks; and these days I’m more likely to smile at that, than get upset.
‘Trapped’ took me four years or so to write, and was first published in hardback in 2014. In the intervening period my hopes, attitudes and beliefs have undergone several revolutions. I guess I’m hardly an impartial witness, though readers can also scan my web content to find my second book, ‘Happiness Matters’ a modest tome about how to be happy. So I can’t be that much of a miserable git these days. The test would be whether such comments as these reduce me to an indignant, grumbling mess. They don’t.
What we are, who we are and what we think about what matters in life, are facets that are constantly evolving. There is not much I would wish to alter about my books, or my writing, but all things change, and writing ‘Trapped’, my sincere attempt to reflect on my first forty years of life, changed me, and changed my attitudes to life in general, and my life in particular. I learned a lot from the process, mostly, about the importance of doing our best, and of being as happy as possible more of the time. Valuable lessons that have empowered me to move forward. I can’t say I would write or do anything else differently, or speculate how my life might have turned out if I had opted to become a visual artist, say, or stayed on working as a solicitor.
The publishing industry calls memoir, ‘narrative non-fiction’ which is a very polite way of saying that the content is largely true, but reads like a novel and will probably contain some plot holes and a few examples of poetic license. But after ten years, the truths that held true when we first wrote THE END to finish our memoir, have probably changed, as will the authors themselves.
I have made time lately – finally! – to get on with editing my next indie book, ‘Making Miracles’, which I hope to publish in May this year. Given my legendary ability to procrastinate, having a deadline of sorts helps me to focus with the job in hand. Deadlines help me both to work better, and to relax, knowing that I can plan and aim for a certain date.
‘Making Miracles’ is based on a dream diary that I have been keeping since… let me see…since about 2002. That would be about the time I stopped my work as a solicitor and found myself plunged, unexpectedly and joyfully, into new adventures called, ‘parenthood’ and ‘adulthood’ and ‘growing up’. The practical needs around being a stay at home mother meant my writing didn’t start seriously until Seline began school, but I did keep up with my dream diary, a process which has taught me so much, and which, if I’m honest, is proving rather daunting to review and edit so that it may be published.
Yes, I would like some of this to reach a wider audience, because I have found it so very instructive and interesting. But it is also personal, and challenges me in a ways I never really expected to be, so that the editing is not the light-hearted breeze I had been anticipating.
I’m wary of causing offence with my talk of God, angels, guides and past lives. But in that concern, I find it very important not to agonise over whether I’m doing the right thing, whether I should mention this or that, and whether any of it matters. By far my most important discipline right now is to go ahead, keep going, and leave some of that high-flown worrying until later. At least that attitude helps me to keep moving.
Few pastimes give me greater pleasure, these days, than leaving wonderful reviews for books that I have discovered that are – wonderful. Well written, funny, intriguing, satisfying, well plotted, thoughtful… we have a hundred adjectives to describe why we like books. I have a few reads and reviews to catch up on.
So I guess I do read while writing, but not always, and definitely not at the same time – even with my super-light e reader, I don’t have enough fingers. Perhaps it also depends somewhat on what genre I’m writing in.
Narrative non-fiction is challenging on so many levels – make it read like fiction, but true, up to a point of view, and don’t tread on anyone’s toes – that I recall long periods of not reading while I was writing Trapped. I was too caught up in my parallel world to continuously make the transition to other parallel worlds, so I kept those others at bay for a while. There was also a lot of emotional stuff to process, so it would have been hard to read anything except books that could matter in the same way – and I didn’t need any more of that.
I certainly did read other books, for the change of scene, for light relief and for a pool of ideas to help me refine the text of what I was writing. In any case, my writing rate is relatively slow: I might write two books over the course of three years, and not in strictly chronological order, either, so reading has been vital to keep my impetus going, and to give me space to reflect and escapist time off.
Writing fiction is another whole pond to swim about it, and, on the whole, I enjoy reading books – at bed-time, first thing in the morning – that help me to compare my work. I used to find this very hard to do. Comparisons were never far away, and my insecurities would run riot; but these days, I simply rejoice to find a new author, or a new book that I can enjoy.
I remember many years ago coming home from an evening out with a boyfriend. For some reason, as I put my key in the lock and turned it, I grazed my knuckle, which bled profusely. Said fellow – oh, the cad! – refused to believe me when I said I had cut it thus; and when he did, he could scarcely credit my carelessness. I had no sympathy from that quarter. At the time I was puzzled and confused, until I realised he thought I had been lying, trying to fetch out extra sympathy, perhaps.
Recently, another piece of the puzzle slotted into place quite obviously. Last year, I was diagnosed by my new optician with – not serious – inferior peripheral blindness. I appear to have been born with this. Which means that, when I walk into a dark room, that is why I fall over things. I don’t see them. Ha! Something else makes more sense now.
I also notice that when I walk, I do fly about a bit, and appear to rely on my hands constantly, to field the space around me, to move about safely and find my way. Perhaps as some kind of answer to reduced vision – of which, I must say, I am entirely unaware. I must have always known about my hands-on navigating technique, but was unaware until recently – as a result of several injuries and cuts that have put everything ever so slightly off kilter – of the extent to which my fingers graze the roughcast walls of the stairwell, for example, or my hands grip the bannister and catch and snag as they do so when I go up and down the stairs.
I shall just have to be more careful, slow down and watch more closely. Or wear gloves. Which would have several other benefits. I’m not sure if I can type with gloves on, but perhaps it is worth a try.
So there I am, after a day of editing, busily editing some small part of my Mum’s next book. She has written many, all of which we will have to get published. And blow me down with a feather, if I don’t find the pages of one rather early draft, neglected for a time, scattered with strange Chinese characters, all of which help to further obscure the meaning of a rather, um, specialised text. What to do? Go through every page carefully deciphering each complex character to try and reconstruct the underlying meaning?
Visiting Mum later on, I remembered to mention this to her, and she said, “You only have to use ‘Find’ and ‘Replace’ twenty-six times” Each Chinese character substitutes for one letter of the western alphabet – of course! Sounds so obvious when I remember…
Or, almost asleep one evening, I suddenly realise that I have an abundance of one particular word – ‘that’, say – in a paragraph…which I can easily locate and thin down with other, more interesting words in our abundant English language lexicon. Find and Replace are such useful functions on my WP programme, and every day, when I am writing, as I casually edit them, I thank God for the clever person who thought about this and realised that reading through screeds of paper to find the one misplaced phrase is time better spent doing – almost – anything else.
I would be truly lost without the ‘Find’ and ‘Replace’ keys. It takes me time to navigate round new templates, and my fondness for this and a host of other useful functions, is one reason why I delay upgrading to a newer computer system. (That, and a rather old-fashioned loyalty to pieces of equipment that have not yet died on me.) I get used to things and am loath to change them.
If, as I suggest there, most employers and most members of the public are at worst incurious about impairments and, at best willing to be encouraging and supportive, from where comes this habit we have acquired of identifying ourselves first and foremost by what hinders us: “Hello, my name is David and I have CP.”
Increasingly, anti-discrimination legislation is regulating what we regard as acceptable behaviour carried out in the public eye. We are all guaranteed access to retail outlets, to cinemas, to public pools and all forms of transport; we can expect respect in speech and in public gatherings of all sorts. Even smoking and littering are punished with a fine. So, if the public at large have few problems and are willing to see progress in more tolerant attitudes, whence cometh the idea that we must define ourselves by what we can’t do? Naturally, it seems that such attitudes are dying out gradually, and good riddance. No-one I know seems to miss them.
Is it the form-filling? The questions – on very long forms – that we have to answer, in order to qualify for public assistance? Is it the expectation, even in this day and age, that all our income must be justified and scrutinised, earned and worthy? I wonder…
Claiming benefits these days is a very complex process, designed, so many suspect, to put people off claiming their share of what should be a universal entitlement based firmly around need. But why make the system so complex? Increasingly, claimants are required not only to navigate a system that makes Mensa members look slow-witted, but to answer personal questions – can you dress yourself? Can you go to the toilet unaided? Can you climb steps? – which have no place being logged in the public sphere. Having answered questions like these to the best of their ability, service users are often penalised for later failing other requirements, time limits, box ticking… It’s not just adults with various impairments who are affected. The long-term incapacitated, single parents, those with caring responsibilities… Many people claiming benefits have to answer rather oddly prejudicial questions about their personal circumstances.
Personally, I favour a system of Universal Basic Income, which would allow us to get away from needs based assessments, encouraging us all to get on with their lives in any way we wish, without undue intrusion from the State, and without salacious and misinformed information gathering. Such as step as universal basic entitlement would remove most of the pretexts that currently exist to allow the collection of personal and private data.
Because service users become used to a system, numb to its cruelties, does not make it right, or worthy of one of the world’s richest nations in the twenty-first century. We need a system that allows its citizens to go about their lives, living as they choose to live, without undue intrusion and respecting their rights to privacy, peace of mind, honesty and personal dignity.
Having spent fourteen plus years looking after daughter and managing many of the small details of her life – does she need a new toothbrush? What about feminine products? – I have decided that this year, she is old enough to manage these for herself. Goodness knows, she is far cleverer than me in a whole host of ways, and she can afford to leaven her lying about our home with a few trips to the shop at the top of the road – it is, literally, at the top of our short road. And no, she does not need to be subsidised for all her trips to town. Not only do I still pay for most of her clothes – she chooses, I foot the bill – but she gets pocket cash and extra money regularly.
It’s proving more difficult than expected to wean her off the oversight I have been used to provide, and which, if I am not careful, can swing so easily into a host of small remembered details for which I am expected to assume responsibility: Has she fed her cavies today, and has she remembered to take her keys? But moving boundaries are natural and necessary.
As our child grows, my responsibility is shifting away from actual doing for her, to more of the prompting to do for herself, which in itself signals the letting go that we must all renegotiate constantly, so that when she leaves home she can manage all her own small details competently. Yes, I allow for adolescent sleeping and relaxing. I did a lot of that myself. But increasingly, I view it as my role to advise, rather than simply doing for her, again and again. Lifts to activities become weather checks and bus-fares.
I find myself deciding to cast off stuff I have usually done for hubby too. He buys his own clothes now, without any help from me: so instead of four button cuff work shirts, he mistakenly buys two dress shirts which require impractical cuff links. I could get cross, or I could simply reflect that this is a learning curve like all learning curves. Today he wore a dress shirt to work, and enjoyed doing so.
With all this delegation and consequent extra free time I create for myself, my responsibilities change too. I must do more to stay fit – swimming again, walking more, getting outside every day – and work properly, writing and producing good, enjoyable material I can be proud of. I have no more excuses for wasting time or for taking lazy short-cuts.
If this year is to mean anything, I have to follow through with my personal and professional goals, and make sure that I do my best to meet them honestly. If there are a few seismic shifts on the way, I’ll deal with them too.
Warning: This post is contentious and may trigger uncomfortable feelings.
In my experience, one of the first things people with disabilities talk about is – their disabilities. It’s as if not only the world at large, but we too, think first and foremost about our burdens, our blindness, our CP, our deafness, our otherness. I know I have been guilty of this. For years, as I wrote in a lead letter to ‘The Herald’ ‘…my disability became the only thing I identified about myself for decades, and a heavy burden to carry…’
But, because I now see that as dissing ability, I no longer identify with my impairment – I refuse to talk about what I can’t do, and mention that only in the most cursory terms; the letter references a period when I was in mainstream employment between 1990 and 2003 – and I notice when people with impairments mention them, and use their impairments to explain why they have no work, no ambition, no hope.
Is this social conditioning? Perverse pride? The problem is, that when we do talk about our impairments, we don’t seem especially proud. We don’t sit up straighter and beam encouragement, but avoid eye contact and shuffle a bit uncomfortably, cry or grow indignant and angry. As anyone would who is forced to talk about what they can’t do!
The disability mainstream appears (from one who is admittedly rather outside the debate on this matter) to be hampered by its insistence on degrees of disability / suffering / loss. ‘I’m more disabled than you’ implies a wheelchair user to an ambulant cerebral palsied person. A double-amputee trumps a deaf person… It is such a pity that those of us with impairments still seem to play the game of compare and contrast with each other, and to find some comfort in a kind of system of consolatory comparison. We all do this, to a greater or lesser degree. And it would be great if we could stop.
Comparisons are odious. Instead of identifying ourselves according to what we can’t do – a lamentable impossibility which, btw, government enforcers also need to take a serious look at – we should focus on our common ambitions, our friendships and how we can draw together. We are doing so, more than ever. Having leaped past that thorny introduction, ‘what’s wrong with you?’ many of us do draw support from each other. Yet despite all our good intentions, rather than learning to focus on our positive qualities – are you a great kisser with a sense of humour? – we still define ourselves by what we can’t do, and allow ourselves to be characterised with heroic language: a great tryer, really inspirational, an amazing person, wow, how fantastic….
Despite the media’s attempts to dress things up, I am heartened from watching “Employable Me” to notice that, by and large, employers, interviewers or members of the public seem a fair-minded and compassionate lot, well able to look past the old and tired narratives of ‘I can’t’ that characterise so many adults’ search for employment. Often, interviewers prompt the candidates to take a fresh look at what they do well and to leave behind the limiting beliefs and assumptions that have so far stopped them being successful.
January 31, 2018
Spring weather
Fran Macilvey Fran Macilvey, Fran's School of Hard Knocks, Happiness Matters 2 Comments
Spring weather
A recent trip north to see my family, to say hi to Mum, finds her ensconced in her slippers, reading a not very good book – which she is determined to finish – and the rest of my family hard at work on household chores or employment elsewhere. A big house takes a lot of tending.
To join in the spirit of the gathering, I have also brought my work, which means that after an amazing two-hour drive – through torrential rain between Edinburgh and Kinross and then out onto quiet roads in bright, calm sunshine – we all now sit in companionable peace, not needing to be entertained but all pleased and doing our own thing. I am glad to be able to report that Mum is settled, and with her new glasses and finally sleeping well, she looks and seems better than in about two years. Come to think of it, since before my father died, and before all those notaries – my mother, in jest, refers to them as notary 1A, 1B, 2A, 2B, 3A and 3B… – started variously raising our hopes and dashing them.
In the legal morass there have been several heroes and heroines – thank God! – foremost among them my eldest sister, and my mother, who has borne it all, through intense grief, with courage and her trademark sardonic stoicism.
It is wonderful to be here now, and to reflect that all is growing into new beginnings, just as the Spring is about to take hold. I have high hopes for 2018, and not just because all our legal troubles are – hopefully – coming to a close, but because, unexpectedly, we have all weathered them so well and come through stronger, more peaceful and more kind with each other. For which I am so grateful.
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