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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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.
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