Picture the scene.
I'm opening the main door to the block of flats. It is a yale lock.
I ease my electric wheelchair as close to the door as it will go.
I lean up and insert the keys.
I put my arm back down for a few seconds (lifting my arm like that is hard and painful).
I lift my arm again to twist the keys. My other hand is ready on the joystick.
As the key turns I edge the wheelchair forward, pushing the door open, which incidentally wrenches the keys from my hand.
I move the wheelchair forward, retrieve the keys from the lock, and drive onwards to my flat, letting the door bang shut behind me.
This sounds like quite an ordeal and yes, to some extent it is. But I have been doing it for ten years and am quite used to it. On the other hand if I am with a friend then I usually chuck my keys at them and ask them to open the door. No need to hurt my shoulder unnecessarily.
I was less than impressed though when someone walked up behind me when I was half way the process. They became impatient, leaned over and grabbed my keys from the door, saying "Oh, let me do that". When I objected, they pointed out that "they could do it faster than me".
Although true they hadn't really thought things through as we were now left in a slight dilemma: they couldn't get to the door round my wheelchair and I couldn't move without running them over!
This is a typical example of the wrong way of "helping" someone. Just because you think you could do it "better" doesn't mean you should, and certainly not without warning or without consent. In this instance I was perfectly capable of opening the door. This person just got impatient.
Very often disabled people who turn down help are seen as being "proud" or having a "chip on their shoulder". It is not uncommon for non disabled people to get cross when this happens. I have been on the receiving end of abuse for very politely turning down help. (eg "Thanks for the offer but I'm fine at the moment" led to "You're all the same, you lot. Well **** off then.")
But sometimes "help" can be unhelpful.
I have had people get things down from a shelf which I didn't even ask for or want and then get angry when I politely said so. (What am I supposed to do? Buy random items strangers get down off shelves?)
When I could still wobbily walk with a stick, I had people grab me by the arm, which did more harm than good, and occasionally made me fall over.
As a manual wheelchair user, people sometimes unexpectedly grabbed my chair and tried to move or push it. This can be very frightening if done without warning!
As a wheelchair user I have also had people enthusiastically try to open automatic doors for me, or doors I didn't want to go through (including a door to a flight of stairs). But I think I am now digressing into a whole new realm of absurdity!
Moving back to today, there are some tasks which, if I am feeling well enough to do and they don't hurt me, I prefer to do myself. I don't care if I am slow or awkward doing them.
If friends or family are present I am nearly always asked if I'm sure I don't want them to do it for me.
I would stress that this is not them being overprotective. As I have a fluctuating illness there are days when I really would need their help. But if I answer that I am ok to do it, they always respect my reply and leave me to manage. (and should I change my mind half way through, they will also come to the rescue!)
This is absolutely the way it should be.
It wasn't this way from the outset. There was a learning curve on both sides after I became sick and as my disability progressed.
For my part, I had to learn when I needed help and when to ask for it. This was not necessarily a matter of pride, but a matter of relearning what I could and couldn't do.
For their part some of my friends and family over the years had to learn to respect my decision to do things, even if from their point of view it would be "easier" for them to do it.
You see, at the end of the day, I have people do lots of things for me. These are the things I couldn't do even if I tried. I appreciate that help. But to sit back and let people always do the things that I *can* do would seem very wrong and certainly completely unnecessary. Not to mention that should I do this, then I would never do anything at all.
If someone can't accept that and insists on doing something for me anyway, against my wishes, isn't that saying more about them than it is about me? Maybe it is more about embarrassment, or a lack of patience, or even a desire to "look good" on their part than an excess of pride on mine.
Absolutely. Just in the 4 days I've had a wheelchair on hire this week I've had someone try to lift it by the armrest while I was sitting in it - which would likely have ripped the entire side panel off, and probably half a dozen attempts to open doors for me that have made things worse through not thinking about what we're trying to do. OTOH and in fairness have had even more people making space for me, or opening doors and not getting in the way. OT3rdH, if they can get it right...
ReplyDeleteThis stuff scares me a little as although I don't live with PTSD symptoms every day or every every month, there are situations, like someone entering my personal space and moving me about against my will, where I'm liable to react very badly indeed. And of course, a powerchair with the motor engaged won't budge an inch for all the pushing and shoving in the world - the only way it can be moved manually is to be picked up, and with me in it, it's the weight of a small to medium sized elephant..
ReplyDeleteI think this is a big thing about these situations - there are things that are irritating and frustrating (and I'm not saying that they're okay) but there are other things, like what you experienced today and David's experience, where someone is crossing boundaries, taking control of someone's person or personal possessions without, or against, their express consent. It's not pride to have a big problem with that.