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Trapped: the call for a more flexible world

Fran Macilvey is an Edinburgh-based author. Her memoir ‘Trapped’ tells the story of her life with cerebral palsy. She has also published two self-help books which she thinks of as ‘gleaning something valuable from forty years of making mistakes’ and has recently finished writing three novels about women’s experiences with the law.

In my quest to enjoy a full family life, I have met many sympathetic professionals. But as Engender’s report indicates, this is not so much due to good policy, as good luck.

As part of a series of events being organised by Edinburgh Libraries to mark International Women’s Day on 8^th March 2022, I was asked to take part in a panel discussion. Our brief, to publicise the life and work of an Edinburgh-based woman (or group of women, why not?) brought me to Engender, who invited me to contribute a guest post to ‘On the Engender’. I’m delighted and honoured to have this opportunity.

Reading Engender’s 2018 report, Our Bodies, Our Rights has been a vindicating – and at times, depressing – experience. It is a brave and realistic assessment (at last!) of the gaps in health and social provision that hinder disabled women in exercising their private and reproductive choices; in effect, their most basic human rights. Whether to have intimate relationships – read that again – whether to get married and have children, and how to bring them into adulthood while running the gamut of inconsistent and unpredictable help from professionally-minded others with rather mixed agendas. Thorny personal decisions which, as often as not, we have to navigate alone, in the face of fairly generalised ignorance and many misplaced good intentions. But this is only one aspect of the price that I, and countless others, continue to pay in our efforts to participate in mainstream life.

Mainstreaming – by which I mean the process through which most of us attempt to live and work and play alongside each other most of the time – is frequently exhausting. The process of integration with ‘normal life’ also brings with it a great deal of added uncertainty – How will I manage? Will I be seen as a nuisance? – while the pace of mainstreaming is faster than I can comfortably negotiate. It's hard always having to make oneself the exception: “Excuse me, Mr Burgess, but what about me?” only because, more often than not, my physical challenges are overlooked: interviews up several flights of stone steps, a “quick dash out for lunch…”, “Let’s walk and talk…”. Such polite niceties seem banal and harmless but their effect is to make ‘normal’ agendas challenging, and there is no point pretending I can blithely keep up. I can’t, and I wish the world was more flexible.

Walking is, for me, a physical labour, one step at a time. As a child, a young woman, a wife and mother, a friend, a sister and as a colleague, I have spent fifty plus years trying – and not really succeeding – to keep up. I walk slowly and clumsily, tripping and falling often. Most of the physical aspects of life are a struggle. As I get older, falling is no longer the easy, bouncing nuisance it used to be; keeping up with ‘normal’ life is increasingly unpredictable and dangerous. I am reluctant to admit this because of conclusions that others might draw. In my quest to enjoy a full family life, I have met many sympathetic professionals, but as Engender’s report indicates, this is not so much due to good policy, as good luck.

And there subsists a constant, low-grade fear about what might happen if things go wrong: What if I fall under the bus, or get lost? Widespread ignorance continues around the realities of living with disability, while there is an understandable unwillingness in others to broach the topic and ask “how can we help you?” without seeming intrusive.

I wrote Trapped because I got tired of trying to explain; in conversation it would take me too long to present a balanced, equitable view of the limitations imposed by my kerfuffle of impairments. So I thought writing about my life choices might save time in the end and allow me to move on from my ruminations.

Predictably – sorry, but so it is – there remains a small seam of readership that characterises my story, and the telling of it, as me complaining. When I raised my hand at school to ask again, “What about me?” I was seen by my classmates as asking for special treatment. Really, I should just shut up and try to get on without being such a constant, embarrassing nuisance - yet all I seek is the minor adjustment in others’ expectations that will allow me to participate as an equal.

The vast majority of those who read the story of my challenges are sympathetic; and those parents, siblings and friends not directly affected by impairment have one reply: “I had no idea". It has taken me decades to accept that generalised ignorance is not often targeted, malicious or deliberately unkind. Yet ignorance remains the single greatest stumbling block to disabled women obtaining anything like parity with their more mainstream sisters.

So it would be wonderful if those charged with making decisions about our lives would first listen to us, and then be prepared to adapt the way they do things. It could be something simple: a couple of extra options listed in an on-line registration programme, for example, or giving those of us with mobility problems a bit longer to get from A to B.

Unless we are heard, and generalised ignorance among policy makers is challenged, erroneous assumptions will continue to be made about our capabilities that veer from flattering – hey, my own mother forgot that I could not carry a tray – to insulting; it’s demeaning to be spoken for when we are capable of expressing our own views. Solutions that are imposed without true understanding often create additional hurdles for end users, which then have to be overcome in addition to all the rest, and thus the cycle of difficulty and misunderstanding continues.

Shining a light on the realities of life is never a waste of time and I thank Engender most sincerely for the fact-finding and advocacy they undertake, a process of engagement which offers the hope that one day, whatever our impairments or challenges, we can exercise the choice to move from the quieter eddies of life into the mainstream and actually live enjoyably with the rush, as others do. Thanks for reading.