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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January 5, 2023

Parents into Work

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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

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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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July 4, 2022

Testing Positive

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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.

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June 15, 2022

Waiting to be noticed

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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.

***

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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.

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April 23, 2022

A beautiful season

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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.

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