Fran Macilvey
Author and Speaker on Disability, Social Inclusion and Personal Empowerment
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April 23, 2022

A beautiful season

Fran Macilvey Fran's School of Hard Knocks, Happiness Matters, Making Miracles 2 Comments

A beautiful season

It’s a beautiful season. The crocuses and snowdrops have emerged among the bright, triumphant narcissi, only to be succeeded in their turn by the bulging, generous bunches of pink, white and red blossom of flowering cherry trees and the docile, large-blossomed magnolia all weeping generous petals by suburban roadsides. The sky is blue and the sun is warming gradually.

The world of nature, though we have thoroughly lassoed it to our own purposes, always reminds us that as soon as one beauty fades, another comes out to delight us. Thus, we should not hanker after what has been, but look for what is now, in full blossom.  

Though heartbreak is never far away these days, it’s a lesson I do endeavour to listen to, and learn from.

Sorting through decades-worth of possessions, aware that the few things my mother still might lay claim to – she is now in a residential care home, and cares very much about that – are only the smallest fraction of what, until recently, she might have called her own, I am caught by grief: at the dispersal of her much-loved collection of books, sought over many years and studied carefully, their contents analysed and understood; her clothes, mostly of the everyday variety for comfort, though in a drawer I find some silk scarves, recalling more elegant days when a quick dress change was required for a sudden acte de presence at some function or other; her clay pots and keep-sakes, all carefully preserved, and each with a story that makes them meaningful.

And so I catch myself wondering at the nature of possession and ownership. Which must surely mean, to have an association with an object that makes it meaningful to self, in a unique way that it can never be to others. As soon as the association is lost, and unless a new association is made, (“I remember when Mum used to wear that dress…”) the objects of one’s affection can be passed on; and in some sense must be passed on, since not only are associations unique to each one of us, but each person, each successor must make their own memories in this life: no-one else can do that for us.

Let us hope that we can each make good memories.

Thanks for reading.

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March 31, 2022

Have lateral flow tests, will travel

Fran Macilvey 'Trapped: My Life with Cerebral Palsy', Memoir, Path To Publication 2 Comments

Have Lateral Flow Tests will travel

After a break of two years, I’m taking my three novels, now completed, to the London Book Fair 2022.

They are printed double sided, on lighter paper, which I calculate will save me about a kilo of carrying weight, which is a significant blessing. I’ve been triple vaccinated and will take a clutch of lateral flow tests, masks and sanitiser, which I hope will see me through the two-and-a-half days of my attendance at the Fair without major mishap. Here’s hoping. While Covid will, in all likelihood, become endemic before too long, so far, I have escaped infection and I hope my luck will hold while I am in London.  

Fran with Author Soulla Christodoulou at London Book Fair

I did book to go to the London Book Fair in 2019, saying then that it would be my last visit. And, as on so many other occasions, my prediction proved premature: life had other ideas, the 2019 Event being cancelled at the very last minute. This year, hospitality prices have plunged, are all refundable until point of travel and can be paid for as one arrives at the hotel, so there is every reason to travel. And with a kilo less of weight, it looks as though this year is going to be a win-win-win, whatever happens.

***

I have other good news to celebrate. As part of events to celebrate International Women’s Day 2022, Engender, Scotland’s Feminist Policy and Advocacy Organisation published this post on their blog, for which I thank them most sincerely. It’s wonderful to work with others who are dedicated to meeting the challenges of equal representation for women in all parts of our lives, public and private. If women were more equally represented, I do believe the world would be a more balanced place to live, and everyone would benefit.

Thanks for reading.

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March 8, 2022

Change and Progress

Fran Macilvey 'Trapped: My Life with Cerebral Palsy', cerebral palsy 4 Comments

Change and Progress

Spring is a good time to think about how we would like this year to unfold. Everywhere the daffodils and crocuses are budding and flowering and after the cold of winter, as we emerge from the rigours of Covid, we are hopeful that this year will bring something special to us all: new beginnings, new ideas, new hopes and plans.

At horse-riding recently, I was distracted and tired – I’m not complaining, just setting the scene – and my hands refused to stay level, weaving and tugging all over the place, like someone trying to cast a fishing line, perhaps: Fine on the river, not so good in the riding school at the Drum. And beneath me, dear Mr Bob waited patiently, doing exactly what I was instructing him to do: weaving his neck up and down, and going no-where I wanted him to. Even though he knew that the end of the lesson was in sight.

Now as well as being clever and handsome, Mr Bob is a very good horse, very disciplined and extremely responsive, so I know very well by now, that he will do what he is asked to do. When I give a signal, he obeys without question. Which is humbling, yes. But he also showed me that my signals are what create an outcome. Not just in horse-riding, but in life too, the signals I give out are often – exactly! – mirrored in what happens next.

So if I want things to go well, it’s my job to offer the right signals. Blaming others – horses, friends, neighbours, delivery drivers – is a big part of what stops me from moving forward; a truth so vividly demonstrated to me by Mr Bob while I was attempting to ride him and going no-where.

In so many ways, Mr Bob has been my teacher. He does not need me to ‘ride’ him – he knows what to do, and does it all the time, peacefully, correctly, and with great dignity. So all I need to do is stay balanced and calm, give the right signals and enjoy the ride.

Lesson well learned. Thank you Mr Bob.

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February 3, 2022

An Exciting Week

Fran Macilvey 'Trapped: My Life with Cerebral Palsy', Amazon Audio Books, cerebral palsy, Fran Macilvey, Memoir 10 Comments

An exciting week

This has been an exciting week. With the turn of the year, and the return of notifications in my email feed, something magical seems to be happening in my ‘to do’ list. Yes, there is still lots to fix and sort and tidy at home, but I’m also getting on with my own work, reaching out and making new connections.

I am in touch with Catriona Kirkpatrick, Head of Development at ‘Engender’ an advocacy organisation with a feminist agenda based in Edinburgh that collects and collates data, reporting and advocating on matters affecting women.

I am in equal parts relieved and dismayed to read Engender’s report, “Our lives, Our bodies” (2018) which explores the stark realities that disabled women still face when deciding their personal and reproductive choices. Of course, this is a subject very close to home, but reading the report several times, I am thoughtful, remembering how painful my life used to be and how much effort has brought me to this point. Telling the truth about our lives is difficult; just as hard is the realisation that often, improvements happen too slowly for many women. At the same time, I am relieved to be reminded that advocacy can bring knowledge, respect and inclusion to a wider audience. Change happens slowly, but it happens, one day at a time.

This week, “Trapped” also features as ‘Book of the Week’ with the Cerebral Palsy Research Network (CPRN), based in Greenville, SC, US. I’m delighted it is featured, and I hope it reaches new readers, helping those who do find it, to realise they are not alone.

Finally, as part of International Women’s Day – 8th March 2022 – I’m taking part in a panel discussion in Edinburgh. More details to follow. Watch this space!  

Thanks for reading.

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January 24, 2022

Plans for 2022

Fran Macilvey Fran Macilvey, Path To Publication 2 Comments

Plans for 2022

When I look at that date, I can hardly believe it’s already 2022 – where do the years go?

But unlike the somnolence of last year – the lingering uncertainties around lockdown, movement and meeting people anywhere but on Zoom – it looks as if travel will be possible this year and I hope to take full advantage of that freedom. I won’t be taking it for granted; which is another way of suggesting that I intend to enjoy my travels, in the full awareness that travelling any distance anywhere outside my immediate neighbourhood is a privilege.

Thinking back to pre-Covid times, many of us used to travel routinely to and from work on early flights. In the last few years, I’ve also made good use of early planes to get to Schiphol before the morning rush. Now, so many meetings take place “remotely”, I can’t help but wonder why it took a national pandemic, and all the crises management that that implies, to get me to change my ways. It’s not about “having” to meet people in the flesh, though that is undoubtedly a wonderful thing; but so much of what we formerly assumed was indispensable to our way of doing business, has been revealed as a luxury, a thing to appreciate and enjoy, and hopefully take more carefully than we usually would have done formerly. If only one good thing comes out of the last couple of years, it is that we are learning, I hope, not to take what we can do for granted.  

Plans for 2022 include a visit the London Book Fair, which this year is open for visitors and happening between 5th and 7th April. Hotels nearby that used to charge a king’s ransom and insist that their bookings were non-refundable without the payment of a hefty premium, and that all sums be collected at point of booking, are now falling over themselves to be accommodating. Bookings are about half of the price they used to be, refundable practically up to the point of arrival and payable only when inside the hotel doors. All of which makes travel arrangements much more relaxed, enjoyable and affordable than they used to be.

Thanks for reading.

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January 6, 2022

All I wanted for Christmas

Fran Macilvey Fran's School of Hard Knocks, Happiness Matters 4 Comments

All I wanted for Christmas

Having had an ambivalent relationship with the Festive Period for many years – I’ve only recently learned how to truly enjoy the cooking, the jollifications and the present giving – I have often said that all I wanted for Christmas is to be happy. And we have had a truly wonderful Christmas and New Year. As, I hope, did you.

While tidying, mindful of wrappings and boxes to recycle, I reflected on the presents we received: many books, blankets and things to eat: confectionery, biscuits, seasonal jams, oatcakes… Not a techno gadget in sight, and no new clothes either. Instead, perhaps mindful of the climate crisis, rising fuel prices and much murmuring about supply chain problems, we now have enough blankets and scarves to keep warm should the heating go off, enough books to read until next year, and comfort food galore.

Is what we have received as a family an indication of a more general shifting of priorities across society? I do hope so.

While I would not go quite as far as to suggest that presents should only be for children, I do occasionally find the sheer avalanche of goods on offer a little daunting. So I’m heartened to notice a real up-turn in the fortunes of ‘pre-loved’ clothing sellers and the like; and relieved to notice that – finally! – more plastic packaging than ever – plastic-festooned boxes of chocolate, anyone? – are now being presented in recyclable packaging, but perhaps it’s simply that books, blankets and biscuits will always be welcome here.

I find such a clutch of items immensely reassuring and kindly – indeed, I need never worry, this year at least, that I will run out of books to read, and I can save a small fortune on delicious treats and chocolates. Now, all I need to find is an eco-friendly thank you card to send. There are quite a few to choose from…

Thanks for reading.

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December 16, 2021

The Year in passing

Fran Macilvey Fran's School of Hard Knocks, Happiness Matters 4 Comments

The Year in Passing

The year in passing has taught me a great deal: about the value of patience, humour and empathy, and about the need to be clear about our choices, and unafraid to make them. I wonder how many times I’ve accepted a situation because others have suggested it, or organised it around me, and I’ve just nodded, as is my wont, and allowed it to happen.

I’m a great believer in fate, since I realise that there are some things that, no matter how much we might want them, we cannot have; but I hope that does not mean I am fatalistic, and allow life to drift without purposes of my own. Knowing how much power there is in the choices we make – big and small choices count equally – I’ve become more decisive, which brings an air of freedom and clarity to the things I do. And increasingly, I find that when I make choices – no matter how unlikely – the Universe goes into gear to deliver them to me. How delightful that is!

This year, I have managed, despite my fairly constant domestic duties, to edit into completion three novels – and here I give thanks to my beta readers for their enthusiasm and very insightful suggestions. The first two novels are now submission ready, so in the New Year I shall be submitting again, and more hopeful than I have ever been, of positive outcomes.

With winter, Covid and Christmas in mind, I’ve been tidying our living space, hopeful of refreshing it next year, while buying more ‘pre-loved’ Christmas presents than before. The environment does not need me to throw any more plastic at it, so, with that in mind, meaningful minimalism seems to be this year’s motto: less is more. I only hope that our combined efforts will make a difference to the environment, and mark a shift in our thinking about ‘black-Friday’ spending and consumerism in general. It seems a pity that we so often let that search for “the perfect present” get in the way of enjoyment and our pleasure in company.

I wish you all a very happy Festive Season, with blessings and hope for the New Year 2022. May all our dearest wishes come true.

Thanks for reading.

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November 30, 2021

Not as easy as it looks

Fran Macilvey 'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks 0 Comments

Not as easy as it looks

Life, sometimes, is not as easy as it looks. Before my usual riding lesson this morning – a lesson which was cut short because Mr Bob has caught a dose of the flu bug going round the stables – I went shopping for groceries for my mother. I was up against the clock and thought it would be simple, forgetting that traffic in the morning is a bit congested.

But having arrived and parked, remembered to wear my mask and having skipped as fast as I could round the shelves, I waited to be served at the single cash-desk with a member of staff checking out groceries. And I did wonder whether I should use the self-service check-outs, as seemed to be the general expectation.  

I would love to use the self-service more often, and I do realise that most retail outlets would encourage this. Many stores now offer only self-service to departing customers, having dispensed with check-out assistants almost altogether. But I find self-service hard to manage. Not only does the scanner seem to work very slowly and haltingly for me, but with an elbow-crutch on one arm, having to scan items with codes on, navigate stacks of groceries and packing bags as well as masks and clouded glasses, I just despair of ever managing to complete a self-service shop in less time than it would take me to have a bath: not quite the ‘quick and easy’ option touted by the supermarkets then.

And, when shopping in a hurry, that makes for an unenviable choice: wait in a long queue for the single check-out available at which there is a member of staff ready to assist (there being three other check-outs un-manned despite the queues of customers clearly still wedded to the idea of staffed checkouts) or spend a fraught twenty minutes trying not to fall, get tangled up with bags, or drop and spoil groceries which I am supposed to stack and pack in the ludicrously small space available at self-service kiosks. Not to mention that old saw thankfully receding, “Unexpected item in the bagging area,” which no-one seems able to explain, let alone comply with.

Yes, technology is easy, assuming you have a head for passwords, thin, quick digits for texting and typing, and an inordinate patience with processes which require to be carried out either self-service or on-line or both. But it isn’t as easy as it looks, nor as simple as those in the know will tell us. I bet, if there was a time and motion study carried out before ‘smart technological advances’ were introduced, we would discover that – surprise! – the much-touted time and manpower cost savings are seriously eroded by the real-time soul-destroying minutiae of errors, corrections, procedural requirements, compliance, and the loss of goodwill that fed-up customers represent.

‘Quick and easy’ is so often the euphemism for ‘less expensive’, a euphemism which also implies that anyone who disagrees, or who doesn’t actively enjoy ‘quick and easy’ is a party pooper, behind the times, a behemoth. But I’m not an ice-age mammoth, I’m merely a busy woman short of time who wants to buy groceries without having the run yet another gamut of challenge and difficulty. It would be simplistic of me to ask the supermarkets to ‘bring back the check-out staff’, but the fact that I am waiting, obviously hampered by my walking aid, and in a hurry might suggest to someone that they could offer to help. Because Life is not as easy as it looks.

Thanks for reading.

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November 1, 2021

A Bad Habit

Fran Macilvey 'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Happiness Matters 2 Comments

A bad habit

Last Saturday we went to visit our daughter at University, and at the close of a lovely afternoon – during which it stopped raining for long enough to allow a lovely bright blue sky to emerge, with warm sunshine, a fitting end to British Summer Time – we had the ritual trawl around the supermarket and then back to her digs with several shopping bags.

As husband stood from the car and daughter went to fetch her provisions, I automatically assumed – bad habit – that I would be staying with the car, even although I have no real problem with stairs and do indeed enjoy the challenge of them. While my present self knows that I enjoy a challenge, because of the extra walk, and the stairs to climb to my daughter’s room in a top flat, my more historically timid self bid her a fond farewell, and then sat and waited, for husband to lift and carry his share of the bags and return.

It was only as we were driving away that it occurred to me: I didn’t need to wait by myself with the car. I could have accompanied my husband and daughter up to her flat. They would not have minded, and indeed, it would have been good fun, even if, as I feared, it would have taken an extra ten minutes to do everything. So what? My daughter is not one to resent the minutes I spend at her side, nor would she tut impatiently as she waited for me to catch up.

That I think she might, is a residue of an ancient habit that I have yet to entirely shrug off: This idea of being a nuisance, somehow in the way. The next time we visit, I do hope that I have the courage to simply join in, and not worry about the extra time it takes, to make time for me. I reflect how often I have excused myself rather than face this dilemma, and only now realise that my husband and daughter see me in a very different light from that of my childhood. No longer a nuisance, but a part of their lives, accepted, and expected to participate.

Thanks for reading.

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October 6, 2021

Busy doing nothing

Fran Macilvey 'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks 2 Comments

Busy doing nothing

I used to ascribe my almost legendary ability to sit still, to a simple – or perhaps, not so simple – realisation of the physical effort of getting a life.

If, as I do believe, it takes me a lot of energy to do a thing, that tends to mitigate against doing it. Thus, I have spent a lot of my time doing little except either reading about other peoples’ exciting lives, or worse, watching other people doing things.

Perhaps there is another factor at play.  

My family, and especially my parents, were and are opinionated. That is, generally, a good thing; and nothing new. My mother however, has also been and remains, incredibly contrary. So, I share a family joke that goes,

Fran: Mum, you realise you contradict everything I say.

Mum: No I don’t! That’s’ just not true…

And I notice afresh how often what I say will be met with contradiction. For example, if Mum has had a good night’s rest, she will say she doesn’t need or want night-time carers. Conversely, if there were no night-time carers in place she will just as easily complain of having had a bad time of it, and that the long watches of the night are dreadful to endure alone… It may well be that the progress of her illness exacerbates an existing underlying trend, so that what was previously accepted as the sometimes-amusing quirk of a contrary nature now becomes glaringly obvious.

But in the particular context of what this means for my own behaviour, I have to conclude firstly, that – well, yes! – if one grows up knowing that whatever one says or does will meet with criticism or contradiction, one learns it is best to do and say as little as possible; and secondly, if I don’t wish to replicate that pattern of learned uselessness in anyone else, I must never criticise anyone, nor comment too forcefully on what they choose to do.

After all, I do know, intimately, how hard it is to do anything when one is watched with eagle-eyed interest, and one’s every action and utterance is subjected to pointed comment. It’s only recently that I have realised that (a) it wouldn’t matter what I chose to do, the response would be the same; (b) it’s a habit so ingrained that it’s totally not personal; therefore (c) not only may I follow my own path, but I must do so.

Thanks so much for reading.  

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