cerebral palsy

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.

Thannks for reading.

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April 17, 2023

Walking Outside

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Walking outside

It was a comment of my daughter’s while I was in town with her and my husband – “Why do we walk (outside) as if we don’t know each other?” – that set up a long fuse, a question that wanted an answer.

Good question.

I used to think of my walking stance as broad and roughly triangular, taking up a lot of room on pavements and walkways. These days, with two walking aids, I am even broader in my stance, though I do manage to be a bit faster and more confident. However, because of the extra space I take up on the pavement, it is a brave person who can stay abreast of me and ignore the hurried accelerations of others as they overtake.

Most pavements are rather narrow; and those pavements that are broader, also tend to carry a lot of street furniture. So my husband has evolved a habit of either forging ahead of me, or walking behind me in single-file mode. And that has always been that.  

But why? Because, he says, he doesn’t wish to impede others. He doesn’t want to get in the way. This is the expected politeness that of course makes plenty of sense and which my daughter would probably agree with, if asked.

I do rather rebel at the assumption that I, or we, will be in the way, even if it is sometimes true. Unless I rather forcefully insist that I like his company and would welcome conversation, outdoors, I will otherwise be doomed to spend the rest of my life walking with Eddie in single file, to spare his blushes and for the convenience of others.

In single-file mode, I feel either self-conscious – if he walks behind – or rather as if I am being pulled along on a lead, if he walks ahead. I just want to walk beside him, and I think that joy is worth the possible inconvenience to others, who will simply pass by and continue their conversations anyhow.

So I now ask my husband to walk alongside me, and perhaps he may stop worrying what other people think, and oblige me. Not because I am selfish, but because I do wish to inhabit my life fully. Now I do believe that a little inconvenience to others is worth the pleasure I gain from being able to converse out of doors at my leisure. And since I rarely do walk outdoors with my husband, it seems a small privilege to claim.

Thanks for reading.  

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March 29, 2023

Its Complicated

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Its Complicated

Having finally managed to get downstairs with a rucksack full of stuff for the second-hand store, and brought with me a walking stick and a waste bin which needed emptying, I reached the car and realised I had left my handbag – with car key – upstairs. So up again I went, only to be delayed by a phone-call while I was there.

My journey home was no less perplexing, with three walking sticks now in my car – which is the single, and which two are the pair? – as well as the empty bin, my rucksack and various other things. On the return leg, I forgot to bring the waste bin upstairs and so went down again to collect it sans walking stick. That small choice, for that small journey was a little fraught. Having recently hurt my back – how, I have no idea – walking without an aid outdoors is now more intimidating.

attilio baccani – lady reading a book – 1876

Thinking back on over the twenty-plus years of living here, I wonder, when and how did life get so complicated: two sets of elbow crutches, both different – a pair that fits in the boot of the car and another pair that are just fractionally too long and so repose on the back seat – a handbag, rucksack, shopping bags, waste and recycling… Everything takes a great deal longer than it used to, and each time I venture outside and downstairs I have to wonder, “Do I have everything? House keys – check! Handbag – check! Car key – check! Walking sticks – check! Phone – check!” Will I be able to manage everything with two elbow crutches? Or would it be better to manage in two or three trips up and down the stairs? Is my phone charged? Are my house keys in the trouser pocket with no hole? Which pocket is that?  

If you are amused, I am glad, and I agree, the palaver is fairly comical. But it can also be a little tiring and frustrating. I find that, instead of trying always to do things quickly – to “keep up” – it becomes easier to slow down and enjoy every moment, perhaps seeing it differently. How glad I am, still to be able to mobilise, after all.

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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.

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May 12, 2022

Casting Off

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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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March 8, 2022

Change and Progress

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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

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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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November 30, 2021

Not as easy as it looks

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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.

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November 1, 2021

A Bad Habit

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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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