I was reading a blog yesterday that I sincerely hope was tongue-in-cheek, as it was saying the most outlandish things about spending time with disabled people, and how to both speak to and treat them. If it wasn’t tongue-in-cheek, then I just found someone who needs locking up. Either way, it made me realise that I have over the years, had many odd reactions from strangers. Granted, when you are asking for help to get out of your wheelchair with loads of parcels, I suppose it does set other people’s minds running. I had to get up two steps, yes, another one of those well-designed buildings, but there was no other choice. Some people are extremely helpful, but I have noticed one thing, from taxi drivers onwards, no one ever wants to touch you, not even when you hold your arm or hand out. I have never been able to work out if they are scared of catching something, or they are scared of hurting me, it could be either. I suppose it is another one of those situations, where education and personal experience means everything. But as a golden rule, if someone offers you an arm, your not going to hurt us and it’s rare, that we have fleas or any other sort of lurgy.
It isn’t that many years ago, where the general opinion out there was, that the second your backside settled in a wheelchair, you became brain dead and deaf. Personally, I have only come up against that reaction a couple of times, but over my lifetime, I have seen it far too often. Once again, I can see that the world is changed and is still changing, but it wasn’t fast enough for my life. With schools now being integrated and disabled children no longer isolated to spending their childhood, with only other disabled children, there is a generation growing up, who will treat us, very differently. Clearly, I haven’t been out socially for over 8 years, but I have noticed on the few trips I have taken to the hospital, that not only has the world changed, so have I. I can remember seeing people sitting in their wheelchairs, with their carer saying almost everything for them, and wondering why, they weren’t speaking for themselves, now I am beginning to understand.
The hospital that I go to the most is the one where Adam works. When you arrive by hospital transport, you can’t bring your own chair, so you have to use the ones available and they all have to be pushed. We often when we are there, bump into people he works with, and they will exchange a few words. I don’t know them, nor do I have anything to say, so I sit there silent. It would be just the same if we were out in a shopping centre, if we met someone, it would be someone who knew Adam. Why? Because housebound or just wheelchair bound, we don’t go out, and the longer that goes on, the fewer people we actually know. Oddly as well, the longer you are isolated, the less you actually feel like sitting there chatting for chatting sake. Logically, you would expect it to be the opposite, but it isn’t. Spending so much time alone, should you would expect, make you want to make the most of every second that you have, with people, but you don’t. The truth is, the more time you spend on your own, along with the worse your health gets, the more withdrawn you become. To my surprise, these days when we go to the hospital, I know that I now adopt a body posture that simply screams, leave me alone. It is one of those things, like any piece of body language you don’t notice you are doing it, until later, when you look back on your day.
I had never thought about it until recently, but it is a posture that I have seen right through my life, from others being pushed in a wheelchair. We sit there, hands folded on our laps and our eyes cast downwards, often, we also sit not straight onto the world, but slightly to one side and it screams, I’m here, but I’m not. On occasions, the way I sit has far less to do with my mental state, or how I have changed over the years, but the pain I am in at the time, but no one but I, know that. Our perceived body language isn’t always what it means, more what our bodies are doing to us at the time. I hadn’t realised just how degrading being pushed in a chair is, far more than propelling yourself. Haveing to be pushed, is a diminishing experience in its own. I used to blame it for me being like that, but now, well now, even if I were to be in control, it wouldn’t be any different. The more ill I become, the longer I am housebound, the more I am withdrawing from that sort of interaction with strangers. The combination of my stuttering, memory problems and everything else, is turning me into one of those people no one really knows how to interact with, and I can see and feel it happening.
So how do you react to someone who is so clearly shutting you out? You speak to us as though we were standing next to you smiling. If that is how I am treated, I respond like I would have done 20 years ago when I was fit and healthy, just with a stutter and few missing words. Don’t shout at me, I’m not deaf. Don’t put your head on one side, and bend towards me, that comes across as patronising, or depending on your smile, intimidating. Don’t crouch down to my level, that’s how people speak to children in a pushchair and I’m not a child. Don’t speak slowly, I do still have a brain. Even worse, don’t speak slowly with emphasised facial actions, as I’ll feel like punching you. It doesn’t matter how I look. If I’m twitching or quietly trying to pretend there isn’t a speck of drool on my lip, treat me just as you would treat your friends. The majority of us that you will ever meet, have brains. There is only one fact you will ever need to remember. No, complex issues or list of possibilities, it’s simple, we are people, treat us as such.
Please read my blog from 2 years ago today – 21/02/2014 – An appetite for inaction
I woke this morning with one small problem, breathing. For once this has little to do with my COPD, this is the fault of yet another cold that Adam caught and of course, means I then catch it as well. My head felt like it had been……