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Saturday, 20 April 2019

Do you need any help?

I was at the vet's this morning, sitting on the back of the boot of my car, assembling my chair, ready to take Liggy in. A couple, walking past, asked me, "Do you need any help?"

I get that people are trying to be kind, when they ask this question, but I find it a really stressful moment. Some people are quite offended if help is refused, and many people seem to think that I should ask for and accept help more often... but I'm never sure what to say.

You might also be a kind person, wanting to help a random stranger that you know nothing about, so I thought I'd share some of my quandries on the subject:

At the car

I load and unload my chair practically every time I go anywhere. It takes a couple of minutes to pop the wheels on, put the back up and pop the seat cushion on. The trickiest bit is the wheels. Because I love my loopwheels, each wheel weighs about the same as the rest of my chair. Because Loopwheels are English and Ottobock (the make of my chair) is German, they aren't quite compatible, so I have to have a washer on each spindle. Losing the washer is very easy and if I lose it, I can't use my wheels.

So if I accept help with this task, I'm trying to imagine what will actually happen. Will the person know how to assemble my chair? Will they listen if I try to explain the importance of those washers? If they lose a washer, will they magically reappear later, when I am stuck, or will I be alone and helpless then?

Repacking the car, after an outing, is probably a time when a bit of help would be appreciated but again, I'm trying to imagine what would actually happen. Would they put all the pieces exactly where I know to put them, so that when I arrive at my next destination, and I'm on my own and they aren't there to be helpful, I will still be able to function? Will they wedge the wheels carefully down the side, so that they don't slide to the boot opening? Or when I open the boot, will they fall out on me? Will they even know how to dismantle my chair without damaging it? Or will I have to show them how to do it, which would be more tiring than just doing it myself?

So what help would be really helpful? I'm wracking my brain, but I genuinely can't think of anything in this situation that I would find more helpful than just being left to get on with it. I'm really sorry. Don't mean to be unhelpful but I actually can do this job on my own.

Restaurants

We were in a Toby Carvery last week, and a member of staff came over to the gravy and sauces area and offered to help me. That was quite handy, as I was sitting there, wondering whether the gravy had beta-carotene in it, whether I should have my food dry, just have a little bit, or risk having another allergic reaction. Help was just what I needed.

The lady started with an open question - "Can I help you?"

I didn't think it was that tricky. I needed help to know whether the gravy was okay. So I asked her whether the gravy had carrot juices in (not everyone knows what beta-carotene is). She looked utterly baffled and repeated her question. I thought I'd better go for a reword. So I explained that I'm allergic to carrot and often gravy is made with the water the carrots have been cooked in and asked her whether she could find out for me. She replied by asking whether she could carry my plate.

Fast forward about 5 mins and she did eventually go and bring me the gravy granules packet, which didn't mention carrots, carotenes or anything else I can't have. Then she asked whether she could put the gravy on my plate for me. Now I know I'm awkward, but I'm not the greatest fan of gravy anyway (too many allergic reactions) so I said I would rather do it myself. I thought she'd gone, but she was still there waiting to carry my plate. I have to admit, my patience was beginning to wither by now so my request for her to let me through might have been a little more curt than I intended.

Toilets

Gotta warn you, nothing baffles me more than this one. In general, the doors of accessible toilets are the perfect door! They are wide, light, don't close automatically, and have a bar that means I can close it behind me. So I do struggle to understand why so many people (men, more often than not) seem to want to help me go to the loo. I get near a toilet door, and people leap out of nowhere to offer to open the door. Now that wouldn't baffle me so much, except that often, the same people walk through those big heavy doors that swing shut by themselves, letting them shut in my face. These doors are too narrow, so I often fight to open both doors simultaneously, keep them open, and guide Liggy and propel myself through. If ever help was needed, narrow heavy doors are the perfect occasion for a bit of chivalry!

So do I need help going to the toilet? Yes, actually, I do. But I never get the help I really need, unless Neil is with me. Getting through the door, lowering the rails, getting myself onto the loo, etc... not a problem! Hovering over the toilet because the last person peed all over the seat - now that, I struggle with.

So when someone asks if they can help, what I desperately want to say is, "Oh, yes please! Could you just pop in before me, clean the toilet, mop/dry the floor (so Liggy doesn't have to sit/lie in a pool of water) and clean up any mess for me? I'm guessing though, that like the gravy-lady who didn't really want to know what help would be useful, but wanted to feel that she had done her good deed for the day, most of the men who stop me, don't have cleaning the toilet in mind.

Some rules for offering help

1. Think first. Is this a task that a person must do repeatedly, several times a day, every day? If so, they've probably worked out how to do it better themselves than I could do.

2. Ask/offer help but listen to the answer. Try not to have your own plan or assumption as to what help is needed. There is a lot of awareness of invisible disabilities these days. The invisible might be where help is needed most.

3. Only offer if you really want to help. This sounds obvious but I think many people offer help but it is to make them feel better or feel less pity, rather than to actually make me cope better.

4. Don't impose help. I didn't mention this earlier, but I have occasionally had people decide that I need help going up a hill, a kerb or through a door in my chair. Without asking, they burst into my world and manoeuvred me. The trouble is, my hands have been injured several times by people doing this. I got a really bad friction burn that bled for days because someone decided to help me up a kerb without checking where my hands were first. I've also had my knuckles crushed in doorways, too often to count.

Finally

Sometimes people offer to help, listen carefully to what help is needed and then help really helpfully. When that happens, I really really really appreciate it! We've just come back from Spring Harvest, where we attended events with 2000 people present. We were sitting with Liggy next to me but because the venues were dark and busy, sometimes people nearly trod on her... accidentally of course! There were two stewards there who really helped me by standing in front of her during entry and exit times, to protect her and me from being hurt. It wasn't a glorious task. Nobody saw them doing momentous things and commented on how wonderful they were. In fact, apart from Neil and me, nobody even realised what they were doing. But it was SOOOOOO helpful and I REALLY appreciated it.

I do like help. It just has to be helpful.

Oh, and by the way, I like helping too. So please let me help you sometimes.

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