Children of disabled parents speak
Children of disabled parents speak
The following articles were written by three young people about their personal experiences of growing up in a family with a disabled parent. These articles first appeared in the August 2010 edition of forward magazine, published by the Spinal Injuries Association, the leading UK charity for spinal cord injured people. For more information visit www.spinal.co.uk
A daughter’s view
My mother has been paraplegic since before I was born so it is all I have ever known. Thus her spinal cord injury (SCI) has not changed me, as it might have had she been injured partway through my youth, but has almost certainly had an impact on how I have grown up. I am told that I very much take people as they are and don’t expect anything particular of them. This is probably at least partly due to growing up with a mother in a wheelchair and being taken along to places where I met all sorts of people from a very young age.
There has always been a lap to sit on, which is great when you are aged three and trying to ‘help’ peel potatoes or when older and just feeling lazy or wanting a hug. When young, being allowed to drive MumÂ’s electric wheelchair was very exciting, as was our first adapted VW Caravelle. The front seats rotated and there was a lift that stowed away underneath: this was fascinating for me.
An early memory is that of being around four years old and preparing to go on holiday. My father had succumbed to a bad back and was lying in bed trying not to make it worse and babysitting my twin siblings, and I was sent back and forth fetching things from the great list of things to pack (about 75% of which were Mum’s). Going on holiday has always been a military style operation! My perception of the world is subtly different to that of my peers. I notice things such as stiles on a walk, dropped kerbs, or the availability of a disabled toilet in a pub and knowing that in order for Mum’s chair to fit through, a door needs to be the width of my elbow to my fingertips of one arm plus thumb to little finger of the other hand stretched out.
Growing up with a mother in a wheelchair has certainly not held me back and in some ways may even have pushed me forward. Thanks Mum for being wonderful!
Claire Pargeter, aged 20
A son’s view
Hi, I am Alex and my mum became paralyzed long before I was born. Some people say it’s a miracle she even had me, others just don’t believe it’s possible for a wheelchair user!
Anyway, my mum, she’s a very strong-willed woman which has its advantages and disadvantages. We live in a four-bedroom bungalow and she does everything any other normal mum does, well except cut the grass that is. She keeps getting on to me about the state of my bedroom and telling me to tidy it up. She will not pick up clothes and toys left lying around, though she’s very good at keeping my drawers neat and tidy for me. Problem area is changing the sheet on my top bunk, but I just get told to do it myself.
I have an extensive collection of Lego which I have been accumulating for a year, my favourite being the Republic Crusader which I got for Christmas last year. I do enjoy setting Lego up in the sitting room. However, according to Mum I never know when to stop. She occasionally flips and bungs it all in a big storage box and dumps it in my bedroom, breaking off wings and wheels from my precious models as she goes.
Hoovering is hard for Mum and she gets moody, especially if she has to cope with Lego on every available ledge. Still I calm her down and do the dusting and polishing on the ledges and windowsills she can’t reach so we come to a compromise. Also I tend to be very good at plumping up the cushions on the settee which is again rather challenging for Mum.
Mum’s recently had surgery on her hands, so I push her from the garage, it’s quite a steep slope. It wouldn’t be too bad but she’s normally got a pile of shopping on her knee too.
After a long hectic day, the best bit is a cuddle with Mum on the settee and a sweet kiss goodnight before we both head for bed.
Alex Deane, aged 11
A daughter’s view
Many say that having a disability changes your life forever, and I agree with this. But just because you have a disability, it doesn’t mean that your life has to stop. It was a rainy morning in October 2005 when the life of my family and the people around changed in a way that no one can explain. Since my dad was paralysed at T6 everything is different, but to me that’s not a bad thing.
I spent the last weekend at the National Barbershop Convention where I introduced myself as “the daughter of the guy in the wheelchair from Cambridge Chord Company.” Immediately, everyone knew who I was. Instead of preventing him from doing things, my dad’s condition has opened up new doorways. He sings as part of the silver medallist barbershop chorus as well as doing a combination of skiing, scuba diving and playing the guitar, just like he used to.
Life after the injury has changed for the rest of my family and me. I’ve had the opportunity to do things I never would have done before. Simplicity 2009 and Simplicity 2010 were showcases of local youth dance talent organised and produced by myself and two others. In total the events I have organised have raised a sum of £3,500 for the rehabilitation centre run by my dad, Standing Start.
I can’t even begin to think how my life would have been had that morning never happened; but one thing’s for sure – although he’ll never walk again, I wouldn’t change my life and the opportunities me and my family have been given for anything. Life goes on after SCI; you have to accept that things are going to change and open your eyes so that you can see the doors waiting to be opened.