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.

Dynamic Duo

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

September 2018

Wheelchair user

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

November 2019

Drive

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

November 2019

Power

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

November 2019

Posted on November 15, 2019 #Better Lives #independence #personalisation #personal assistants #direct employers