Some time ago I wrote a blog ‘Fly by Wire.’ It occurred to me that most people would not get that concept. But almost everyone will have used a PC, tablet, smartphone or smart tech. So, you will get this:
You want to do something on your PC, tablet or Smart phone. Open an app, check an email, play a game, write a blog or use a smart devise. You use the screen, keyboard or mouse and there is a delay or it does not quite do what you want. You ask a smart devise to do something and it ignores you. Frustrating eh? All forms of electronics devices, even Apple products, yes I really invoked that sacred name; can have delays. I know because I have an iPad and it can be unresponsive at times. Any complaints about that comment please send to: email@example.com
My point, because I always have one is this: trying to control an electronic device is one step removed from the actual physical devise. No matter how good the interface (that is just the bit that enables you to control the device) you are always a step or more away from the actual hardware, (the device itself.) Be that a PC, smartphone, tablet, iPhone, Kindle, Echo, Ring Doorbell whatever smart device. There is something between you and it (wiring, circuit board, touch screen, mouse, keyboard, wireless connection)
It gets frustrating when that ‘something,’ that extra layer, that one step of control, is too slow or sticky. It doesn’t have to be very slow either. Even a few micro seconds feels slow when you are using a smartphone or a computer. You press a button and there is a fraction of a seconds delay. You move a mouse and the thing you are moving is not quite moving at the same time as your movements. You click a keyboard or on a screen and the response is just a fraction behind. You scroll and the screen does not refresh at the rate of your viewing. You all know what I am talking about. That frustration when an electronic device plays catch up. No matter how small a delay.
Now apply that sense of delay, lack of response, not doing what you expect, to the human body. Imagine that your brain, your understanding, was you as a user of a device, and your body was that device. You want to move your legs, but there is a delay between trying to do that and it happening. Or your legs don’t respond in the way expected. It’s not that you cannot move them, they are not responding as expected. It feels as if they are ‘one step removed.’ As if the control system is broken.
I believe this is where a lot of the misunderstanding about disability comes from. Because a lot of us with disabilities have neurological conditions. The nervous system is the equivalent of the control system in a PC or smart device. It sends and receives signals between the brain and body. You start messing with that, even a little and you get delays and messed up signals. That is what diseases do, they mess with that.
Neurological conditions are many and varied. But a common feature is fluctuation. My earlier illustration might help you understand. You know how sometimes your computer or smartphone just won’t do what you want. Other times it runs as smooth as butter. Then there are times it gives an occasional glitch? Diseases can be like that, they can vary hour by hour, minute by minute, day by day. Someone can take a few steps but still be a wheelchair user. MS is one of the most confusing conditions for an outsider to view. A sufferer can look normal one day and be totally unable to walk the next. But if you remember damaged signal lines, faulty connections, it makes sense. The problem can fluctuate.
In my own case, my legs do not respond as I want them to. I can move them, but it feels just like using a control device that is one step removed. They respond sluggishly and in the way they want rather than as I want. They also lack stability and reliability. I can’t stand up or walk on my legs. Imagine it this way, you have a robotic pair of legs with a seat on. It is operated by a remote control. Every time you test it, the legs wobble or collapse. Would you sit on that seat and try to walk the legs around? My legs feel to me as unreliable as that. They are not a safe and reliable platform.
Another way to understand a bit about neurological conditions and the disconnect they bring is this: Have you ever been so exhausted/over tired that your body does not feel your own? That sense that as you walk your legs and arms are heavy and disconnected. The problem of trying to pick things up, but ending up knocking them over? Or perhaps you have been very drunk or needed to have powerful pain killers? You might remember how that feels? The clumsy disconnected feeling. All of these things will give you a small idea of what it feels like to have a neurological condition that disconnects you from your body. That affects your ability to control what you do. From fine motor control, to large motor control. For example: it could be problems with writing, picking things up, pressing a button. And/or problems with making your legs/arms move in a direction you want. Remember that all these problems can fluctuate in level/intensity minute by minute, hour by hour, day by day. Add into the mix extreme pain (neurological pain is different to muscle pain, much more severe and harder to treat) and the lack of feeling that comes from nerves not working, and you start to get a small glimpse of what it is like.
I did not write this blog to gain sympathy for me or others. I wrote it to gain understanding. Without knowledge, there is only ignorance. Ignorance of the plight of others brings about a lack of care and understanding. Most of us with neurological conditions have been where you are, diseases often hit later in life (not always, some are born with them.) This blog is to give you an insight into where we are and hopefully open eyes.
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