Having an impairment
I hear from readers quite often, writing to me and talking about having read Trapped. Typically a message will begin, “Hi, I’m Andrea, I’m 27 and I have cp. I read your book and…”
Which makes me wonder. Some readers want to write, and ask for advice about that. And I would say, if the first thing you identify about yourself is that you have CP – or any kind of impairment – then yes, you do need to write, if only to get that narrative out of your system.
For decades, my intro line was, “Hi, I’m Fran, I’m X years old and I have CP.” But really, identifying what might be the main challenge in your life as essentially You, is a bit limiting. I have CP, yes, but it no longer defines me, or limits me. The sense of having limitations is odd, relying as much on other people’s ideas of what is possible, as my own. And, I choose not to see myself like that anymore, because to do so is unnecessary and unhelpful.
I’m Fran, I am fifty-four and I have blue eyes; dark blue, almost teal, with a ring of brown around the iris. I like singing, so much so that even at my age, I do so unselfconsciously only dimly aware that other people consider this eccentric. I sing along to music in the supermarkets, because there seems no reason not to: it’s the kind of thing that other people would do, if only they had the nerve.
I’m Fran, I’m fifty-four, and I’m a carer. I care for my family, and for my mother, and I care about the environment. At the moment, four large men – or is it five? – are trimming back the trees at the bottom of the hill at the back of our garden, and I have wept, because I love those trees, which, for me, are a precious glimpse of wildness in the city. I love those trees for being a refuge, for whistling when the wind blows, for being solid and optimistic, and for growing with branches extended wide. And for being taller and bigger than me. For being unfathomable and private to many creatures I will never see. For being faithful, for believing that growth is good and life is sacred.
As for having an impairment… What is that? Is it, as the social model of disability would have me believe, something that I really should be able to ignore? I’d like to, but actually, trying to ignore it is like trying to ignore the elephant in the room…
So instead, I try to make friends with the elephant and listen to what it might be trying to tell me. Often, I might chance a ride on its shoulders, from where I have the most amazing view of life. It’s a metaphor I prefer to play with, rather than push against. And, if we are playing with this particular metaphor, it might be an expensive thing, that hints at a grander life, needing a bigger space to play in. I love those trees because they were elephant sized, and expanded my sense of what I was. Looking up at them, I forgot about having an impairment.
Thank you for listening, and have a wonderful summer vacation.
Please share:
Emma
June 27, 2019 @ 1:02 pm
I think you’re missing a point here. If I emailed you after reading Trapped one of the first things I’d say is “I have CP” because that’s why I read it and then you’d know that my comments are from a point of similar/shared experience. If, for example, I meet someone new at my writing group I wouldn’t. It’s not relevant then.
As for being defined by CP, it shapes everything I do. I’m more than my disabilities but as much as I’m the one who does XYZ and that’s what I’m known for, that’s come about because of CP so it does define me.
We have very different levels of ability, I wonder if that’s what influences our views here?
Fran Macilvey
June 27, 2019 @ 1:41 pm
Hi Emma
Thank you so much for reading this post, and leaving your comments. I appreciate that very much! I wrote this post when I was upset about the tree cutting outside. So perhaps that has coloured my views today.
I write about my experiences with cp because they are, and have been, so much part of me; and because I so wished, for many years and while I was writing “Trapped”, that it didn’t have to be that way. Thankfully, “Trapped” resolves well, and is also about becoming reconciled. I am, and always will be delighted when people email me to say they have read about my experiences and found much to agree with: we all have lots in common.
But I wish I had not been, for so long, defined almost entirely by my impairment. “This is my daughter and she has CP” was about the only thing I heard, which put me in the invidious position of having to explain, atone for, and embrace what I most disliked about myself. I was full of self hatred. All of which is a bit tough on a young woman who only wants to be loved.
But yes, we are who we are because of our CP and there must be a part of me that knew that even then, and did her best to use that to become a better person. Writing about our challenges has allowed me to love myself, and to see that, when we love ourselves, the rest fits more comfortably around us.
I think our levels of ability are actually very similar. I can walk, just, but choose not to use a wheelchair. For that piece of stubbornness, I am rewarded with falls and instability. But we are both thoughtful, considered and reflective writers, interested in what makes the world tick. And part of my ability comes from having learned to see past my limitations. Perhaps other people now do too, so I get far less of the uncomfortable notice that used to so disconcert me.
It does seem to start and end with us, and I suppose the challenge is how to live comfortably. These days, I am comfortable, which I count a great blessing.
Thank you! Xxx
Diane Dickson
June 30, 2019 @ 9:40 am
Another thought provoking and moving post Fran. Thank you
Fran Macilvey
June 30, 2019 @ 8:08 pm
Thank you so much, Diane! It’s difficult, sometimes, to put our feelings into words, but I work at it, and perhaps get better with practice. Thank you for reading my posts. Xxx 🙂
Val
July 1, 2019 @ 11:05 pm
Lovely writing, Fran. I love it that you sing in the supermarkets. So do I! Not loudly, I admit, but I sing along if it’s a song or tune I like. You are defined by these sorts of things, not your CP. I like that!
Fran Macilvey
July 10, 2019 @ 9:23 pm
Thank you so much, Val. Increasingly, I enjoy life and hope to keep laughing. It’s worth deciding what we enjoy doing, and aiming for that every time. We might miss, sometimes, but at least it won’t be for want of trying. Keep singing! 😀 Xxx
Elouise Renich Fraser
July 3, 2019 @ 10:42 pm
Very interesting dialogue! I’d say the moment we’re born we inherit a great puzzle–the puzzle of our lives. How do all these pieces, including the parents and families into which we’re born–or not–how do these pieces come together so that we are genuinely ourselves. Which doesn’t erase the truth that most of my physical attributes weren’t chosen by me at all.
Writing about what I received–and was given, sometimes against my will–has been liberating. It normalizes what always felt odd and left me with heightened shame rather than freedom. Even so, today I know I’m still shaped by lots I didn’t chose or seek to receive. Yet the balance has changed–not without help and lots or practice. Still, over the years I feel as though I’ve somewhat ‘remade’ myself into Myself, not someone else’s pet project! 🙂
Love and hugs from across the pond! XXXOOO
Fran Macilvey
July 12, 2019 @ 12:09 pm
Absolutely! The choice seems to me to be about either enduring, or deciding to prosper, despite what comes our way. I do believe that we have that choice and that we select many aspects of our lives for what they will teach us… Which doesn’t make it easier, sometimes, to accept challenges. Love and hugs to you, too! :-))) ♥