Fran Macilvey
Author and Speaker on Disability, Social Inclusion and Personal Empowerment
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January 5, 2023

Parents into Work

Fran Macilvey 'Trapped: My Life with Cerebral Palsy', Happiness Matters 9 Comments

Parents into Work

It takes a lot, these days, to get me exercised about something. What with seismic family changes, a constantly shifting and challenging roster of tasks to get through every single day, and my health being on an unpredictable wicket lately, I have to prioritise.

Yet today, I wonder about the government’s – every government, I gather; Labour are on this bandwagon too – insistence that we have to invest big to “get more women into work”. What the politicians mean is taxable employment, from which a share of revenue can be collected.

In general I approve of higher tax rates. In societies with higher tax rates, I observe that civic provision – such as healthcare, pensions, parental leave – tends to be better and citizens tend to be more co-operative and appreciative of state efforts on their behalf. Which comes in handy when the state is faced with pandemics or nation-wide problems and then has to ask citizens to co-operate with its state-wide strategies.

But this insistence that people, and particularly women, should “get into work” is misleading and just a tad unfair. Most people work most of the time in a variety of jobs and roles, some paid, some unpaid; and the amount of goodwill that goes along with being a paid or an unpaid anything is not only considerable but also, ultimately, unquantifiable; a reality of life which irks bean counters no end.

My aim here is not to make a martyr of unpaid workers, but to point out that most of us do work most of the time, and the last thing we need is increasingly explicit guidance that tries to steer us into “paid employment”. While we currently face industrial action across many paid sectors which are central to our economy and wellbeing, working hours contributed in unpaid roles save the exchequer and business billions of pounds each year. The last thing we need is a bunch of – very – privileged persons telling us that getting into paid work is good for our health and that we have marketable skills.

We know this already, and continue to do what needs to be done every day. What we need, actually, is someone to listen. To help out with the boring stuff and to agree that yes, we are doing okay, we are doing more than okay. That it’s enough already and we are not expected to send our babes into the care of another hard-pressed parent who has set themselves up as a child-minder, while s/he sends their kids to me, so that I can do the same. Reminds me of a Griselda cartoon – I paraphrase – “I’ll give you mine, she can take yours and I’ll take hers…”

When was it decided that a parent staying at home to look after their children was somehow letting the side down? Just because s/he is not in “paid employment” does not mean that what s/he does every day has no value. It’s not always childcare s/he needs, while s/he works out if the costs of working make going back to work worth anything at all. What s/he needs is simple recognition that being a parent – and a spouse, a contributor to a hundred and one different agendas – is valuable and appreciated.

I thought that the Covid pandemic had finally laid bare the value of unpaid work. Now that things are seemingly returning to “normal” it would be a pity to lose sight of that, and to return to the old, tired arguments about stay-at-home parents “returning to work”.

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October 19, 2022

Life without borders

Fran Macilvey 'Trapped: My Life with Cerebral Palsy', cerebral palsy, Memoir 12 Comments

Life without borders

For as long as I can remember – and that goes back to when I was about four years old – I’ve tried to live life without borders. And I manage most of the time because I have never felt disabled. So, when I am forcibly reminded of categories, boxes into which people expect me to fit as a disabled person, I can sometimes get quite upset. Me? Upset? Perhaps an explanation is in order…

My daughter, studying medicine, texted me this morning: “What GMFCS level are you?” and when I texted back, “??? Could you translate??” she replied, “Woah, can’t believe you don’t know what I’m talking about,” and sent me a table, a chart, of – disabled – children drawn in various stages of impairment.

With a picture of a child running and climbing stairs, “GMFCS Level I” reads: “Children walk at home, school, outdoors and in the community. They can climb stairs without the use of a railing. Children perform gross motor skills such as running and jumping, but speed, balance and coordination are limited.”

Level II (love the Roman numerals!) with a drawing of a child walking and climbing a stair with a railing, reads: “Children walk in most settings and climb stairs holding onto a railing. They may experience difficulty walking long distances and balancing on uneven terrain, inclines, in crowded areas or confined spaces. Children may walk with physical assistance, a hand-held mobility device or use(d) wheeled mobility over long distances. Children have only minimal ability to perform gross motor skills such as running and jumping.”

The erroneous, annoying and painful generalisations continue up to Category V.

My chest ached as I wrote that, and my eyes misted over with a mix of outrage and despair. Is this still what we are teaching our children today? In 2022? When cultural appropriation is frowned on, and listening is supposed to be all the rage?

To my daughter I replied that I fall somewhere between category one and two, and then wept for about an hour.

How dare the medical profession put people with impairments into boxes, and categorise them in this way? How dare they use such arbitrary and misleading indicators to put children into different groups. Presumably they only get away with doing so, because they work with the comfortable assumption that no lay person will ever read the teaching materials that spread such misinformation among our students.

Such indicators are used, presumably, to lend medical professionals the assurance that they understand what they are talking about. And to help them, to make quicker diagnostic assumptions. In fact, indicators such as these only betray, if medics take them seriously, that they still have no clue. Worse, that they remain comfortable dealing with generalisations they must surely recognise are misleading and unhelpful. I sincerely hope they do take the time to speak to their “patients” – do I have to call their clients that? – to uncover some part of the truth. We are not a species apart: we have brain damage.

Do medical people deal in categories because it makes their lives easier? Perhaps. But trying to shoe-horn youngsters into different boxes does tend to make their lives more difficult: encountering “professionals” who are taught to think in categories, their patients will then have to spend time and effort working to disprove and confound various entrenched – and unspoken – assumptions that the child will suspect but be unable to articulate. Which makes their everyday lives even more of a challenge.

Thanks for reading.

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July 4, 2022

Testing Positive

Fran Macilvey 'Trapped: My Life with Cerebral Palsy', Fran's School of Hard Knocks, Happiness Matters 8 Comments

Testing positive

Sorry, this isn’t a post about the current isolation rules, the different expectations between England and RUK, though it could be: one of my immediate family tested positive yesterday, and we are still working out what to do about it. I expect that we will buy in a few more Covid tests, make a plan, and try to stick to it. Positive family member will isolate until they have two negative tests; in the meantime, it is highly likely that we will all catch Covid, and if we do, we isolate until we all have two negative tests.

No, my thoughts run in a different direction this morning: My mother is now staying in Montrose. While husband, daughter and I were away in Paris for a few days at the end of June – we all tested negative several days in a row – arrangements were put in motion for my mother to transfer north. With the decision a fait accompli before our return from holiday, a week later, bags and books packed and private ambulance organised for the trip from Edinburgh, Mum is now in a new home.

I have felt, and do feel, grief about this. The move was sudden, and, given the long silence, unexpected. But there are other thoughts that flit in my head, so abruptly emptied of things to think about: where there were pre-occupations, these are now not my problem, and I have a lot of space, into which thoughts are apt to enter, pause, meander and get lost for a while before being retrieved and dealt with.

I also notice, while chatting or being with others, that I’ve been in the habit of continually checking-in mentally, to see what I should be thinking about or doing for or with my mother. Now, I don’t have any of that to do at all, and though old habits are hard to break, I’m sure I will get used to it.

Thanks for reading.

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June 15, 2022

Waiting to be noticed

Fran Macilvey Flash Fiction & Short Stories, Happiness Matters 6 Comments

Waiting to be noticed

Me? Religious? Not so you would notice, though I do believe in God.

Otherwise, how do I make sense of all this? Why do I have a home, a place to rest my head and a husband who loves me, when others don’t? Why do I have the most amazing child in the Universe? It hardly seems fair, otherwise. There has to be a reason in all this random abundance, so apparently casual and replete with generosity. All this loveliness, just waiting to be noticed.

When I realise that every atom in the Universe is unique, I feel breathless for a while, until I can feel my lungs filling again, and I relax. When I despair at the stupidity of those who should know better – why fight wars, and disputes over land? It’s not as if you can take it with you! – I want to shake them that make those far-off decisions which carry such deadly consequences and tell them to wake up! That to destroy what we barely understand is to blaspheme against the most amazing miracle that is Life Itself. It is urgent, I feel, to have some respect, for Christ’s sake. As my sister says, “There are no pockets in a shroud.”

Meantime, in the midst of knowing how mind-blowingly lucky I am, I carry on doing what I have to: visits to the supermarket, the bank, to see my mother in the care-home where she is no happier than she ever was… I’m away on holiday soon, and have to run the gauntlet of airports, security, bodies seat-belted in, overhead ventilation and everyone on their phones…

I think – when I stop to think – that all of this is such a miracle, we hardly need anything else – no flights, no foreign holidays – to make it better. If we could just wake up and see what is, we would marvel, and never cease to be amazed.

***

Thanks for reading

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May 12, 2022

Casting Off

Fran Macilvey cerebral palsy, Fran's School of Hard Knocks, Happiness Matters 2 Comments

Casting off

In scenes of family life, I see myself surrounded by strong people. My parents and siblings seem, most of the time, to have cherished many opinions, and I would be the first to say that I have learned to listen. I am a good listener.

Recently in the post-office, I found myself studying the cards and notelets on sale, glancing up at the outsize posters on the walls and wondering which ones I actually liked. Which in fact, were to my taste? And I struggled to answer. Because in my birth family I have so often been cast as ‘the youngest’ and one most in need of help and advice, my opinions have been muted so that even now, I struggle to know which of the many things I do, I do because they are my choice. Which of the many things I possess, do I hold because I choose to?

I struggle to know what I enjoy and what my tastes are. And when I know, I still find it hard to honour them: Wonderful walk on a sunny day, lovely meal, beautiful painting? Maybe later…

So often my choices have been coloured by wondering, “Would s/he like that? Would s/he approve? What would s/he do?” I discover, in late middle age, that learning to choose and decide for oneself, is something that most adolescents get through. As my own daughter nears the end of her teenage years, I marvel that she is already making the kinds of choices I still struggle with, navigating the world as I might have hoped to, had I been less cowed, less in awe of others’ certainty.

Yet, my age and experience confer at least a superficial dignity and the assumption that I know what I am doing. As I refine the processes of casting off from old family influences, I find I must go slowly and work in a new way to reach decisions, knowing that others besides me will have to live with their consequences.

The past, they say, is a foreign country, they do things differently there. And, life, as they say, is a work in progress.

I hope I am making progress.

Thanks for reading.

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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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