Memoir

September 12, 2023

Just like everyone else

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For years and years I bought into the idea – the dream – that I should be treated “just like everyone else.” If I had known what a mantra was, that would have been mine.

But when I started parroting that dream, I was only a child.

What that phrase is trying to say, is, “I’d like people to see me as I am: flawed certainly, as a character flaw is part of the human condition. But whole, and sometimes, a bit of a pain. And allowed to be a nuisance, not because I am ‘unusual’ and ‘expect special treatment’ but because I would like to listen to Abba when it’s clear the flavour of today’s party is David Bowie. Get with the programme, Fran.

Saying, “We don’t make allowances for you, we treat you like everyone else,” in certain contexts can mean that we are free to ignore you, just as we ignore everyone else. They manage, and so will you. “See? Isn’t this grand? We treat you just the same.”

But that kind of ignoring can sometimes lead to failure: in an active universe, being the subject of ‘equal treatment’ can mean that we sit and listen and nod and admire and wish and dream and hope and yearn for someone to come along who will actually take time to listen, and do things with us. Not for us, but with us. Taking the time to acknowledge difference and allow it full expression and room.

I hope that the world might slow down a bit, so that I don’t have to devote all my energies to just trying to keep up. ‘Keeping up’, I devote a great deal of time and energy to others, worrying about what they expect from me, and what I need to do next to meet expectations.

That’s not good, as these things go; and so now, I do think that allowances should be made, based on what each of us asks for. Which is, to be seen and accepted as we are. We can make time to listen. I don’t always manage that, but it is my aim.

Thanks for reading.

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March 9, 2023

My Life Lost?

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My Life Lost?

One thing that still dismays me into silence, even at this vast distance from my youth – I’m now 58 – is how lost my life would have been, if I had attempted to follow the dismally low expectations of those who, seemingly concerned about my big choices, gave me the benefit of their insights and wisdom. Children and youngsters really do try very hard to be obedient. But what would have happened to me if, despite my utter passivity and willingness to please, I hadn’t also been as stubborn as an ox? Perhaps passivity and stubborn-ness are two sides of the same coin…

This dilemma, about what kind of life people with disabilities can look forward to, has many faces. On one hand, in navigating those choices that define our lives, we face a deluge of opinions, ranging from informed and well-meaning insights, all the way along the dusty spectrum of views to downright hostile, ignorant and simply false notions about what we can do. Some people, obviously ignorant or blatantly stupid (“I thought all people with CP were, you know, mentally retarded?!”) are easy to dismiss; others, such as parents who speak in soft voices and suggest a route that leads no-where (“Why would you want to get married?”) are less easy to ignore.

Despite this deluge of advice, so often we tread a line or path alone, all too aware of the risks but blind to the dangers that may be lying in wait. Growing and transitioning is all about learning to decide for ourselves, though perhaps able-bodied adults can take their choices more in their stride. While I stumbled uncertainly around my next steps, others may have offered frowning, careless, or trenchantly expressed opinions; they may have said they were scared for me, or unsure how I would manage – school, university, getting married, having a child – but while I tried to reassure them, I don’t remember these occasions being met with heart-to-hearts, honest conversations or gentle enlightenment. Having no confidence to ask for, or seek out kindness (though I was thrown several very welcome life buoys by my friends) too often, I fell back on wordless stubborn-ness to take me past the thorns of uncertainty, to fix on an option and do my best to follow through.

So much of what I heard, and tried to reconcile myself to, was misinformed, it is little short of miraculous that I am here today. My heart overflows with gratitude to have arrived. Sometimes, my stubbornness has been my best friend.

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October 19, 2022

Life without borders

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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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March 31, 2022

Have lateral flow tests, will travel

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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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February 3, 2022

An Exciting Week

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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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April 23, 2021

‘Harbour Ways’ by Valerie Poore

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‘Harbour Ways’ by Valerie Poore

‘Harbour Ways‘ is the second book I’ve read by Valerie Poore, (this is the first) and I’m in awe at her industry: how she has managed to move around the world, raise a family, maintain full-time employment and write such lovely books is a wonder. She reminds me in many ways of my sisters: multi-talented, able to put her hand to most things and energetic, yet modest withal.

Poore writes with an immediacy and warmth that I wish I could manage in my own work. ‘Harbour Ways’, one of several instalments of her memoirs, tells us all about her struggles to buy, mend and furnish a historic but much neglected barge which she still lives on today, in Rotterdam, Holland. Courage and the ability to make friends are two more of Val’s strengths, as she negotiates many hurdles and a language barrier in order to repair and furnish her new home with the help of the community of like-minded souls around her. 

It’s interesting to watch the author’s transformation from relative novice to experienced water traveller, and enjoyable to muse on the possibilities of travel for oneself. It may be that lock-down has made me nostalgic, but I’m also heartened to see how one’s life can be transformed through the discipline of a long, long series of challenges, mastered one step at a time. There are times when Val’s courage in the face of her challenges is humbling and inspiring in equal measure.

The book itself is interesting, well-written and engaging, and I wish I could listen to Val’s story-telling long after the narrative closes. Which is doubtless the only encouragement I need to read another in the series. Thank you for writing with heart, and giving one hope that rises above the confines of usual, normal life.

Many thanks for reading.

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December 10, 2020

My mother as she is

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My mother as she is

I went to a zoom meeting recently, organised by my eldest sister, and conducted at my mother’s house, on my mobile phone: Mum has neither a camera, nor a microphone, nor the will to organise such things herself, so we sat companionably side by side at the dining table – a large, reassuring object harkening back to the days of large family dinners – and warbled happily on the phone. It was good.

I noticed that at times my mother has difficulty speaking, but otherwise, she seems to me to have been much more like her usual self. My elder sister, seeing my mother under the overhead lights, expressed concern to me – when Mum was elsewhere phoning my other sister – and I said, “Oh, yes, I suppose Mum does not look very well… But she’s fine…” All the usual things one says to reassure, when one needs reassurance too.

My mother is indeed tired, so tired, that at times, her skin looks translucent. I am used to being a witness to her decline and her constant struggle to recalibrate for the things she can no longer do – for her, a heartbreaking realisation, that I have at least had time to accustom myself to, rather more than my siblings have. To them, a sudden realisation is alarming.

My mother cannot help harking back to the way she was; I too feel hamstrung, so, while I get used to that feeling, meanwhile I do my best to help, smile and hope. It’s just about all I can do. That, and make phonecalls to organise deliveries, extra help; all that kind of thing. I have to stay cheerful, and even when fatigued, I accept there is no better alternative.

My elder sister would like to phone me to talk about it. She will do that when she has time. And I will reassure her as best I can. I know Mum is lucky. She is still able to live at home and has the freedom to live unfettered by the well-meaning “supervision” of others, a word I noted in a recent advert for a care-home, which reminds me of my kindergarten days and makes me shudder.

I try not to supervise, or worry, but I do grieve, a gradual process like the tipping of a sand-timer to the inevitable empty glass.

Thanks for listening.

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October 5, 2020

Taking a longer view

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Taking a longer view

My mother’s health is failing. Finally, after several years of painful struggle and wishing that things could be different – I’ve not quite lost sight of the woman who was content in her domain and saw the purpose in carrying on – my mother’s light is fading.

In watching this long-drawn out process, taking a longer view, many emotions surface. And though I don’t know on any given day which will be uppermost, and which will lie dormant and sabotage me as I sleep, I know that this period of waiting will simply have to be endured, as all painful things are.

Certainly, there is regret, and a patina of peculiar relief, as we both accept the inevitable: I can’t make things better in the way she would like them to be: herself able and competent, living in France, her son alive, well, and, (in the dream she would have liked) living a happy life… I can’t put back the clock, and I’m not sure, even if I could, that it would be a wise course. Would all the things that have happened in the intervening five or so years have to happen again? I’m not sure we could cope with that.

There is comfort, as there always is, in knowing we have succeeded in coming this far together, in peace, and finally in a clearer understanding.

As a kid and a young adult, I often felt my parents to be remote, living by adult rules and logic to which I was not, nor expected to be, privy any time soon. Now, since I see Mum most days and have a hand in keeping her affairs in order, I have, I think, proved my claim to be as content, happy and competent in my own life as most of us are: my mother can relax now, knowing that, although I’ll never reach her heights of scholarship or astonishing grasp of detail, there is enough of her in me to ensure that I’ll be okay. Different, but okay.

Thanks for reading.

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September 23, 2020

Stories of Personal Courage

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Stories of Personal Courage

My friends like to share stories of personal courage with me that they have themselves read and been inspired by. And there was a time – a period covering roughly thirty years – during which I was fascinated by them, mining individual stories of personal strength for nuggets of inspiration and advice when I needed it most. Some of the accounts I have read, I have taken to heart, and they have undoubtedly played their part in keeping me sane and alive.  

Nowadays, I feel as if I have found more of my courage, and so, I simply want to live as happily as I can, one day at a time. Does this make me unsympathetic? Not at all. When I am asked a question, or spoken to, I listen, as I hope I am listened to. But I also want to live freely, untrammelled by feelings of regret or pity.

I would not, and do not, want anyone to pity me; and therefore, while I do sincerely admire people who are living examples of courage every single day, I want not so much to admire them, as to enjoy their company, share their jokes and wish them well.

All of us, whether heroine or oppressed worker bee, at heart just want to be seen for who we are: not placed on a pedestal, nor looked up to, nor discriminated against or judged unfairly as we grovel trying to pull together our dignity from way down the queue.

I want to live on the level with others. I am not a mascot for the “unfortunate”, mainly because I don’t characterise myself or others as unfortunate, nor do I have unique access to spiritual insights, wisdom or empathy. There may be times when I feel I have something I want or need to say, perhaps voicing the views of those who may find it harder to speak out or be heard; but in this, as in most things, I cherish the hope that we are all alike in campaigning for what is meaningful to us.

Are my ambitions at risk of sounding flaccid and pedestrian? Perhaps, though while I do have ambition, my stamina is not always up to par; and for me, walking on the level is an achievement in itself.

Thanks for reading.

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August 31, 2020

“Eat Pray Love” by Elizabeth Gilbert

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“Eat Pray Love” by Elizabeth Gilbert

I can totally understand why “Eat Pray Love” by Elizabeth Gilbert has garnered so much attention and a devoted following worldwide. I’m not put off by the cynical reviews, though reading the book, I’m less convinced by the film – which I saw first. I understand film and book as loosely paired, each bright exponents of their own art: the film as very colourful, the book as a very readable exploration of how spirituality can marry well with the best of western values.

“Eat Pray Love” is full of the kind of pithy wisdom that we might collect for ourselves and deploy over a life-time, taking our favourite nuggets with us on our holidays, or into our encounters with difficult people… And it is also an immensely readable story of how one brave woman learned to slough off the trials of her life to find something more rewarding.

If she can manage to do that, so can we. Speaking as one who has spent years in a spiritual quest to understand Why? and who now acknowledges increasingly that Why is not the point: it’s more useful to work out How… it is heartening to notice many of my own suspicions echoed in this volume. I nod, agree “Yes, of course!” and “Oh, so now I understand…” Which is what, for me, makes this book such a gem.

“Eat Pray Love” is well written, and grapples with seeming ease, with abstruse spiritual concepts that would leave many of us floundering. With a seeming effortlessness, Gilbert lays out to view her evidence for a kind, generous all-seeing deity who loves us totally, and would like us to be happy. To argue with that seems churlish.

Rather than write a glowing review and indicate that this book saved my life, I would rather you read it and collect from it what suits you, given where you are now, and where you are going. It’s the kind of tale that will resonate with each of its readers differently, so that will have to be my main recommendation: read it, because it might just be the book you’ve been looking for. If not, then working out the reasons why not, is useful to know.

If I have one quibble, it’s that Ms Gilbert – who has such an amazing array of language she could use – in her heated moments references disability as an insult. I wasn’t really expecting to see it written, so when I saw “spaz” it was a jolt, and to see “spastic” used as a form of abuse was like tasting metal in my mouth. Once, as Lady Bracknell might say, is unfortunate. Twice begins to look like carelessness.

Nevertheless, a book I will keep.

Thanks for reading.

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