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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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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