Element 1: An adult human head weighs 6kg on average and is supported by 20 muscles. As long as they do their work you can drive across bumpy tracks or ride a rollercoaster with little discomfort or trauma.
In my case the neck muscles don’t do their job properly and I suffer a distinct lean to port. This means that any shaking of my body can result in disproportionate head trauma more akin to a rat being shaken in the jaws of a terrier.
Element 2; Avid readers of this blog may recall how my hopes to drive an adapted vehicle were dashed when it transpired that my wonderful wheelchair from which I was planning to drive, has too much flexibility in it. Although anchored to the ground to stop the base moving the chair itself is seated on a series of flexible struts which allows me to tilt and elevate the chair according to need. The result is that the chair amplifies any lateral or forward movement of the chair while riding along.
Element 3: Public service vehicles such as buses are designed to be as comfortable as possible when fully laden. That means the suspension is far too springy when the bus is empty. The London underground suffers the same plight and I remember a stretch of track on the Central Line between Barkingside and Newbury Park where a colleague was anticipating suffering a detached retina from the shaking he received daily as he travelled that stretch against the rush hour.
Element 4: As any schoolboy will tell you, the bounciest place to ride a bus is on the back seat – precisely the place where a wheelchair is tied down on an accessible bus, because of the access to the electric tail lift.
Ok, now let’s combine all these elements, add into it a driver who has never in their three months working for the company actually had a wheelchair user on board, and a road system with raised pedestrian crossings, sharp bends and countless potholes, and you have all the ingredients of a perfect storm.
The bus, freed from the constraints of a congested bit of road, accelerated forward, oblivious of the raised pedestrian crossing ahead. To make matters worse it hit the ramp onto the crossing obliquely, setting up a side to side motion which threw me violently from side to side. In the shaking I bit down on my tongue and blood filled my mouth, but my efforts to get the driver to slow down were drowned out by the noise of the vehicle. I beeped my horn and called as loudly as I could in my largely voiceless state, to no avail. The bus sped on.
A further two miles up the road the bus had cause to stop and the driver came to find out how I was doing. I told him he was going too fast and that I had been injured. He was shocked and frightened and decided that he shouldn’t continue the journey unless his control centre confirmed it was safe to do so. (I’m not totally clear as to what would have happened had they decided I wasn’t safe to continue. Would they consider depositing me in the road, several miles from my destination a better option?).
The control centre decided they needed to contact Sally to determine if it was safe to continue. She rightly said they should ask me, knowing nothing about what had transpired and so a circular conversation ensued with no one listening to what I wanted to do. The bus driver and I were in tears. We were both frightened by what had happened but, being men, we didn’t actually cry, we just got angry.
It was finally resolved when I managed to get the driver to understand that I was willing to continue IF he drove slower, especially where the road was badly made up.
And he did drive slower. He drove very well in fact, and had he driven with that consideration throughout we would probably have been ok. We arrived at my destination half an hour later than scheduled. I was still the only passenger on the bus but with a determination never to take the bus again. Another bit of independence has been lost, but this time simply because I don’t trust that the system is designed to keep me safe.
(post script:This blog has caused a number of people to respond saying that it should be shared more widely. If you feel likewise, gentle reader, feel free to share on your social networks if appropriate)
That sounds a very frustrating and distressing experience Ian – and entirely avoidable with the right level of training for the driver. I wish that your experiences were reaching a wide audience as I’m sure they would have a lot of impact. It’s not right that your independence has been further reduced because of this incident. Is there any way that you would want to raise awareness – I wish your voice , even if it is through writing, was heard loud and clear by the relevant people. Systems are there to be challenged and changed but I appreciate that is not your top priority. It just feels wrong that you are the one losing out by what happened. Thank you for taking the time to share what happened so that those of us who do read your blog can understand more about what it is like for you. As I have said many times before, you are, and have always been, an inspiration.
Thanks Amanda xx
So eloquently written and your words wcho my sentiments and hopes for Ian (& Sally) exactly.
Even from the side lines I am frustrated that Ian had to go through this extremely distressing and painful experience. As you say, this could so easily have been avoided, had the driver received the correct training. And now, this option of transport is no longer a viable option for Ian, making his world close in yet further.
Ian, praying for a deep peace to sustain you amid this turmoil and that the strong arms of Christ will protect you, as you journey on with this horrible disease. Xx
I’m sorry to hear you had such a bad and terrifying journey. They really should do better training for all the drivers. I hope the company passes on what happened to you so that others can learn. (Perhaps you could send them your blog so it’s in your own words? Or write a stronger version ….)
I’m so sorry Ian. What a humiliating, horrible experience. Systems are just not designed with thought for the individual as part of the system. 😢. I don’t know if you have a collar, but I have used a Miami J collar for people to travel in, to provide a bit of stability. Sending lots of love. Xx
I think I tried one of those but couldn’t get on with it. Mind you, I’m finding things that worked as little as three months ago are now no good
I am so sorry you had to go through this, Ian, with injuries on top of the frustration, and the shutting down of another element of independence. Please disseminate your blog as widely as possible in a many forms as you can. You are reflective, articulate and courageous, and your voice, in the written form , is as strong and more necessary than ever.
I have to comment on this blog as you know I drove you in your own van a few months ago down the road to the wonderful Yeo Farm cafe. I was warned not to drive too fast, and my conscience is still clear regarding that as I drove at what I considered was a very sedate pace for the roads we used, well under the speed limit much to the annoyance of other vehicles that found it hard to overtake a van! However, reading the ‘technical’ details of how you are affected by any movement I completely understand that this was inappropriately too fast for you as you commented at the time. Your van is also so loud and rattles so much I think the rear doors could have opened, and you shot out the back, and I wouldn’t have noticed!
Professionals who are driving disabled people should definitely be fully trained, and given a better perspective of how it feels for the passenger, and how different each person’s condition is.
Like commercial vehicles have a speed limit sign sometimes, you should have a large sticker on the back of the van saying “This vehicle is limited to 30 mph”.
Looking forward to seeing you next week. Shall we go to Yeo Valley again – Sally can drive😁. Love you xx
What I am really trying to say is if one of your friends can get it wrong (but wouldn’t again), how much harder for strangers unless they are properly instructed. Sorry again.
Please do write about your experience to those who need to know. If anyone can make a difference it’s you with your eloquently written style.
I can’t wait and you can definitely rive again xx
Buses often seem to accelerate far too quickly, break too sharply, and that is for the able bodied! I support all efforts to try to make the whole journey more bearable for all passengers, and your experience should fire the starting gun for change as far as I am concerned – the journey sounds as though it was truly appalling and frightening. I’m glad it ended well.
Ian I remember you telling us about this and how frustrated we were for you… somehow reading it and seeing in black and white hammers home how awful this was. We are so sorry that it ended in tears – we join you with that too..
Your written words continue to be an inspiration and as others have said feels like some of the ‘professionals’ should be taking note.
We love you and praying on…