The things people say

I am no angel, no really, I can hear you all objecting and saying Mike you’re perfect. Oh, that was just me. So I know that I say all the wrong things, very often, yes, very, very often. So, I am saying this in full understanding, but nevertheless I find it amazing.

We were on a respite holiday in Dawlish last week. Most days, weather dependent and in spite of Mary having a cold, we made it to Coryton cove for a coffee at the open air café. It’s lovely to have a coffee overlooking the sea. But, one day when we arrived we were greeted by a chap sitting at a table having a coffee, who said:

“My friend has a wheelchair just like that. He is quite spasticated.” I don’t know if he felt extending the word made it better; it didn’t. Or if he thought I wouldn’t see the connection to me; I did. Some people don’t think. I know he was trying to be friendly, but really that isn’t the way.

Another day we were waiting for Mary’s dad to join us. Mary got chatting to a local workman. He was sorting out the grass. She was admiring his handiwork. Note three things 1/ I was next to Mary. 2/ I was obviously with her. 3/ I was clearly in a wheelchair. The man started talking about how he had a bad back and was due to retire soon. His back was crumbling and may lead to him being unable to walk. He said:

“I don’t intend to end up in a wheelchair, I couldn’t cope with that. It would be awful. Being pushed around. There is no way I will choose that.”

So he was suggesting being in a wheelchair is a choice and that it’s a lesser condition to be in a wheelchair. All while I am sitting listening to him; unbelievable. Perhaps he thought I was deaf, or stupid.

It’s easy to say the wrong thing. I started by saying I do it all the time. But I think you’ll agree these two examples are a little more extreme than most. What does happen a lot are those little comments that we just don’t think about and probably don’t even realise we’ve said.

Someone once asked me if I remembered being normal. I hadn’t realised I was abnormal. Often I am asked if I am alright, just when I am sitting in my wheelchair. Now I hear you, that’s just being kind and thoughtful. But, do you ask the same question of someone sat on a chair? It’s a fine line, I realise, after all I know that I am in a fully supported wheelchair with shoulder straps, I have a neck brace and head support. So if Mary pops into a toilet when we are out and about or into a shop. Those five minutes that I am apparently alone, I may appear very vulnerable. I suppose I am and certainly if I had a collapse in that time I would be totally vulnerable. It just feels odd, if I am sitting, feeling fine when someone says, “are you OK?” I start to think, “why don’t I look it?” Ask yourself how would you feel if people kept asking you that. It does happen quite a lot. Even if Mary steps a few feet away to take a photo.

Of course the other extreme is worse. I have had people assume that I can just get up and walk. I guess they assume my wheelchair is one of those shopper buggy’s. Once I had a very odd conversation with an assistance person on a train. I should just say, this is very unusual. Of all the times we have had assistance, I have always had really understanding people. But for whatever reason this person was not. Maybe they were cross because they had been given the wrong information about my location on the train. So the train had been held up and initially the wrong person got off then back on the train. An old lady who had assistance booked for the next station and assumed they knew what they were doing. So on finally arriving with me they were not in a good mood. Instead of putting the blame where it belonged on the booking agent. They suggested that somehow it was my fault. After all as they said, “many disabled people can get out of their wheelchair, so how would the agent know I cannot.” You see the reason I was in a different carriage was because I had to have a wheelchair space and the agent had mistakenly booked me an ordinary seat. So the train manager had moved me at Taunton, then supposedly phoned Exeter. I had, of course, made my need of a wheelchair space clear to the assistance booking agent and I use the system a lot anyway so it’s on my records. But this person on the train would not accept that and still thought it must be my fault. Mary and I were made to feel as we had done wrong. I will repeat, this is the only time that has ever happened. But it’s another example of how people can say really odd things. To suggest I have a choice about whether I can walk or that I would not tell the booking agent I can’t is ludicrous. If the person had not been so stressed they would have realised that.

One last strange thing people say. I have been called ‘cute’, OK, that’s no surprise after all just look at the photos of me. It was said of me by a young girl when I was in a collapse, she said to Mary, “Ah, he’s so cute.” Maybe she thought I was a big baby? Mind you when I am in a collapse people often think I am asleep and comment on how peaceful I look. It has taken me a lot of time and practice at meditation to feel any peace when I cannot move. So no, I am not at peace in a collapse. Still at least I look cute.

People say odd things, we all do. I guess the point of this blog is that we all need to put our brains into gear before we speak. Me most of all.

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Author: Mike Nevin

I decided to write about the funny side of being cared for. I am a full time wheelchair user with daily carers. It's my experiences with my carers that inspired this blog.

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