Left on the side of the road
By Robert Punton
14 November 2019
Contrary to common opinion, a wheelchair isn’t just a wheelchair. It is a piece of essential equipment that enables me and people like me to live our lives. Contribute to my community. Move under my own power, where I want to go, when I want to go. When pushed by others you go at their pace; you either go where they want to or force them in the direction they don’t want to go. You can’t come and go as you please.
Wheelchairs are not like most cars you can’t jump straight out of one into another and drive away. They are made to meet the precise requirements of the individual much like the cockpits of an F1 racing car. You wouldn’t expect Lewis Hamiliton to jump into Vettel’s car and win, and you can’t expect me to be put into someone else’s chair and drive away. The seating system is different, the controls are positioned differently for everyone.
Wheelchairs are not like shoes you have a few to suit your mood or outfit. No, you are given one that is it.
So, imagine the anxiety, the anguish, the fear when it breaks down, it is literally like having your legs taken out from under you. Then, when you phone up you are told they’ll be out to you in a few days. Imagine your car breaking down on the side of the road and being told by whichever recovery service you use that they’ll rescue you in three or four days. Stressful — but you can change cars, bum a lift, catch a bus or train, even walk, we can’t.
So, you’re put to bed until it’s your turn. Now I can hear you call, that sounds great to me. A few days in bed just what the doctor ordered, and you may be right, if you had choice and control but if you have neither choice or control then your lovely bed can very soon become as confining as a coffin as restrictive as a prison cell.
I am very lucky I have two brilliant Personal Assistants, Darren and Mike with me 24/7, who see to all my comforts and needs (within limits I can hear them echoing in my ears); others are not so lucky. So, I only can imagine the state they find themselves in under the same circumstances.
Back to my particular story. When the repair person came to my home, he told Mike that they had to take my chair away to fix it and it may take several days to get it back. As you can imagine I was apoplectic at this thought and wanted to know whether provision for a loan chair was possible. They told me this wasn’t within their remit and I should contact the NHS. When he left with my chair, I contacted equipment services at my Local Authority (Solihull) who to be fair got in touch with the repair company and within hours my chair was back.
This is a good point to explain from my perspective the gremlins in the current system. Currently, the client (for a better word) and the Local Authority has a contract to service and repair wheelchairs, the LA and the repair company have a contract to ensure that happens. Unfortunately, the three elements never communicated together. For a team to work effectively all parts must stay in touch. When I contacted Solihull Council I in essence made this happen and the problem was solved fast and effectively. No one including me, had thought how the loss of my chair impacted my lifestyle.
The point of this story I think isn’t that people don’t care, of course they do. It’s that they don’t consider the impact losing your chair can have on a wheelchair user’s life. Their lack of knowledge make you think that they see your life as worthless, the contribution you make to your community useless. I am equally aware that my experiences will be mirrored numerous times across this kingdom.
I know this as my friend-colleague had a harrowing experience on trip to London. A bolt severed from his powered chair leaving him stranded in the street. Fortunately, he had his P.A. Terry with him, otherwise he would have been up shit creek without a paddle. They had to beg, borrow a manual wheelchair from a supermarket, then get themselves and broken chair back home to Birmingham using public transport.
There are two lessons to learn from both our experiences. Firstly, the hazard of life as a wheelchair user. Secondly, the importance of a good working partnership, relationship between a direct or indirect employee and their Personal Assistants. To make matters better we must learn lessons from my experience so that things like this don’t happen to others over and over again. I love to express myself through poetry which helps me express myself clearly and concisely, as well as rhythmically. Here are four that cover the subject in my own style.
It would be remiss of me Not to mention My own Great Orme (Mike) Alongside Heroic Harrison (Darren) Are my patient personal assistants Not carers no way They have worked with me Over many years Supporting me through My highs and lows Throughout those times Prove that partnerships are possible Working living relationship are real can work Without them I am helpless, unable truly disabled With their help all my aspirations are achievable My horizons limitless, long may it last As a poet, I am not able to conjure up The words worthy of their worth To express my gratitude So, I hope this short verse will do
© Robert Punton
Imagine having a heart attack Being told you are in a queue We’ll get to you in a few days Your vehicle breaking down On side of road We’ll get someone out to you, When? Well whenever… Well that’s the life of a wheelchair user Your chair breaks down You are left stranded wherever You happen to be House, garden, or in the street It’s like you and your life does not matter What you do does not count Why is this seen as acceptable Our lives matter too, can’t, won’t you see that We are powerless to change situation Those with the power to change Just don’t care This is my life, The life of a wheelchair user In short, it’s abuse
© Robert Punton
My wheelchair stands immobile At the end of my bed As I lay helpless in the same bed Symbol of the fragile nature of independence When my chair has life, so my life has energy When my chair dies, so my life becomes drab I lose my drive to accomplish a better life I become disempowered without my powered chair I rely on others for a fix, To push me in the correct direction To put your faith on others Trust that they will take you On the journey you want to travel To have that kind of trust That partnership is magical You can’t imagine how demoralising Lack of momentum can be How exhilarating gaining back Control of your destination truly means
© Robert Punton
Having a broken powered chair Is not just disempowering Reinforcing our disabilities It is more than having your legs Taken from under you It’s about position and posture In more ways than one How you can’t change your position and posture yourself the way you want It’s also how others have the power to position you to posture over you
© Robert Punton
November 2019Posted on November 15, 2019 #Better Lives #independence #personalisation #personal assistants #direct employers