Last month I was fortunate to be asked to open Naidex at the NEC and hold a Q & A session later in the afternoon. I’ve done this type of thing quite a few times and I take my lead from what issues the client would like me to raise; however I’ve found that quite often my favourite part of an event is the unexpected questions I receive from the audience. On this occasion I was surprised to be asked a question by a face I vaguely recognised but was delighted when this gave me the opportunity to re connect with a young man who was on the same ward as me in Stoke Mandeville in 1990/91. We’d not seen each other in nearly 20 years!
In spite of the many years we’d been out of contact, it was like seeing an old best friend; I guess there is an unspoken awareness of the experience we’d both had as young teenagers in a spinal unit; our experiences weren’t in any way identical but the transitions we faced, the emotions we felt, the characters we met on the ward, and the “adventure” we embarked upon is something none of our more able bodied friends can ever really comprehend.
Below is a transcript of the speech I delivered in the afternoon.
I’m delighted to be here to open Naidex and hugely flattered to have been asked. My first time at Naidex was about 15 years ago rolling down the runway at a fashion show to promote disability and fashion. All these years later and I’ve finally featured in an advertising campaign for a high street fashion range in Debenhams. Hopefully I’ve shown that many physical hurdles can be overcome with patience and support.
I’m looking forward to exploring the various exhibitors’ stands and seeing what ingenious gadgets and appliances have been created to help make our lives a little easier.
As I said earlier I’ve previously enjoyed wandering around the exhibits to see what new and exciting inventions have been introduced to the market. I’m always surprised by how many things I see that I suddenly feel I need to own!
Funny thing is, other than my wheelchair the object I’ve relied on more than any other is an antique gentleman’s cane! Probably a little odd for a paraplegic….
I used this can to enable me and to provide independence in situations where I was “stuck”. When I couldn’t find the remote control, (probably sitting on it, unable to feel the buttons!) I would use the cane to poke the channel and volume control on the television. I used it to bash spiders running hurriedly towards my bed, and to pick up clothes and shoes that I’d haphazardly thrown to the other side of the room. I also used it to open and close my sliding bedroom door without getting out of bed. (Now I’m reading this aloud, I’m not sure if the cane enabled me to be independent or enabled me to be super lazy!) Either way, it gave my family a break from fetching and carrying on my behalf.
I’ve always been aware how many extra demands I’ve places on my family over the years since my injury. Physical, emotional, and psychological strain yet they have supported me 100% in everything I’ve wanted to do and inspired me to keep on going when I’ve wanted to give up. When I’ve been exhausted and stressed through over juggling study, work and modelling and there hasn’t been time to switch off and sleep, they’ve been my rock.
It’s taken a long time to feature a disabled model on the high street and recently I keep getting asked in interviews to discuss how I feel being an inspiration and a role model. The thing is, I don’t feel like I’m either of these things, the inspiring people are you; the parents, carers, teachers, nurses, doctors, physios, OTs and support staff who care for and support someone with a disability. The time, effort, energy and love that you give is inspiring.
I’ve recently been on both sides of the patient/carer fence, (my mother had an accident and was in hospital for surgery then at home recuperating for some time) and I have to say that it’s easier being the patient, the person with the disability than the person looking on worried, frustrated and unable to “fix” everything. The people who endlessly stay strong and supportive are inspiring.
I’m just a woman who had an unlucky accident as a teenage girl, who was stubborn and didn’t want her life to change more than necessary. A girl who wanted to look pretty and fashionable just like her friends, a girl who wanted to get out of tracksuit bottoms and oversized trainers, and get rid of the metal traction on her head, the metal braces on her teeth and the restricting brace around her back!
I succeeded but it was trial and error along the way, apparently I was the first person to use an MRI scanner with train track braces, my consultant had spoken with other hospitals but it seemed no one had done it before. As I slid into the tunnel of the scanner their words rang in my ears “we’re fairly sure you’ll be fine, but if you feel your teeth get hot, shout and we’ll get you out immediately”. I had visions of my teeth being wrenched out by the magnetic force and sticking to the ceiling!
There was the time I went shopping in Harrods and tried on dozens of swimming costumes, I bought two and left, but as I was going through the doors I set the alarms off. This caused a huge furore, tourists staring, people negotiating around my chair to get in and out of the doors while the security guard checked my bags. I was so embarrassed I wanted the ground to swallow me up! Ultimately they couldn’t find anything untoward, I had receipts for my purchases and security guard apologised and let me go on my way. However, when I transferred from my chair into my car I realised I had been sitting on a clothes alarm that must have come unstuck when I was dragging swimming costumes on and off. Oh the red faced shame!
This example supports my theory that sometimes in order to get far with a disability you need to have more front than Harrods! There will always be occasions when we bring unwanted attention on ourselves or those with us. How many of you can recall incidents that make you blush and cringe to just think about them? Nothing quite beats falling out of one’s chair in a public place. It’s ironic isn’t it that half the time we complain about feeling invisible in society and the other half of the time we would rather welcome an invisible second or two.
Well the next time an attention grabbing moment happens, rather than tense up and cringe, try to feel it and embrace it! These are the moments that let you know you’re alive.
I’m going to wrap it up now, but I just want to mention someone who inspired me recently, a young man called Stuart Mangan. He broke his neck at C3 in 2008 playing rugby in London and made a documentary for the BBC which began filming from his date of discharge from the spinal unit. I watched in awe of his sprit, energy and enthusiasm for life, he came across so positive and vital. His personality was so addictive, it was 2am on a weekday but I couldn’t stop watching, I felt compelled to learn more about him. I noticed he lived near me and thought we’d have great craic meeting up for coffee sometime. Stuart was so determined to discover new things which could help make him more independent, voice controlled software for his computer and a new wheelchair which he could manoeuvre with his mouth. His obvious excitement in steering the chair around his flat was a pleasure to watch, I felt so chuffed for him.
Then the screen faded to black and a subtitle appeared to say that a few days after filming Stuart was taken ill with a respiratory infection and later passed away in hospital.
I felt utterly gutted. Selfishly for myself, unable to ever meet him and enjoy the pleasure of his company, obviously I was desperately sad for his family’s loss but most of all I was gutted for him and for his unreserved lust for life. Regardless of the physical restrictions imposed by his disability I have no doubt he would have continued to live life to the max and made every second count.
Stuart inspires me to do the same, to live the life I’m lucky enough to have.
Thank you for listening.