Wednesday, 12 November 2008

Grit In The Shoe Of Life

Continuing with the moany old git theme. Disability is rubbish. Let's face it, very very few would decide to opt for it as a lifestyle of choice. Yes, I know that I should accentuate the positive and eliminate the negative and all that, but all in all, I think most of us would agree that we'd forego the advantages of a blue badge in exchange for dropping the dis in disability. However, despite the assurances of Falwell. Bakker, Swaggart, Oral Roberts, et al, faith and an open heart are no match for genetics or a severed spinal cord, and we have to live with the cards we've been dealt. Moaning does no one any good. (Long time readers of this blog are now raising eyebrows and wondering where I'm going with this.) So, in complete acceptance that it will make no difference whatsoever, here are 3, non-medical, things that irritate me about my personal situation. All are minor, all are merely the grit in the shoe of life.

Talking to navels
As a wheelchair user I spend a great deal of time talking to peoples midriffs. This is usually because people stand to close and I am either forced to stare straight ahead and address their waists or crotches depending on their height, or crane my neck and talk to their chins. Step back, or better yet, sit down if you wish to engage me in conversation. Sometimes, when I have the space, I play a little game. I move my chair away from the person a couple of feet or so to make easier eye contact, if for some reason they step forward and close the gap I wait a moment and then move again. If they close the gap I move again, keeping the conversation going. The aim of the game is to move the person from the starting point to the target point, which may be the other side of the room, the buffet or, indeed, the exit. In the past I've managed the full length of a school hall.

Being Grateful
When you are severely disabled you spend a lot of time saying thank you. Because you are reliant on other people for so much you feel obliged to express appreciation. This is because you don't wish to appear to take their assistance for granted, but, just occasionally, you run low on gratitude. I was once working in Madrid when my Spanish host expressed astonishment at how often the British say please and thank you. “You buy a cup of coffee. You say to the waitress 'please may I have a cup of coffee, thank you.' She says yes. You say thank you. She brings the coffee. You say thank you. You say 'how much, please?' She tells you. You say thank you. You give her money and say thank you. She takes the money, you say thank you. She offers you the change, you say thank you. You take the change from her and say thank you. And then you don't say good bye. You say thank you.” Sometimes it feels as if my whole life is a transaction for a cup of coffee. “Please can you move my foot. Thank you.” “Please can you help me cut this steak. Thank you.” “Please can you hurry with the hoist because I'm dying to go to the loo. Thank you.” “Please can I have my computer so I can moan about you. Thank you.” “Oh, and please may I have a cup of coffee. Thank you.” Please don't misunderstand me, I am sincerely grateful and appreciative of the help and support I receive, I couldn't live without it. It's not as if I could make my own coffee with out having to express thanks and gratitude to the staff at the local burns unit. Thank you for reading.

In your own time
This, in many ways, follows on from the last one. I spend a lot of my life waiting for people. I wait each morning for carers to arrive and get me up. They usually arrive at the agreed time but occasionally things beyond their control get in the way. (Damn that elderly man for needing an ambulance.) I wait for it to be convenient for someone to make me coffee. Recently I had to wait for district nurses to come and help me go to the loo. This weekend Polly is going away for a girly weekend. We rang the district nurses to organise them to come in. They said yes, of course they'd come. Once. Once in twelve hours. We've sorted something out but no thanks to them. I wait for carers to help me get to bed. This time they tend to arrive earlier than I would care for them to. Last Monday I went to see Quantum of Solace at the local multiplex. The film ended (with explosions and a can of motor oil) at 8.50pm, not too late for a grown up I think you'll agree, but by the time I got home at just after 9.00 there were 2 carers waiting for me. Then I felt guilty for keeping them waiting. Now I know that we all have responsibilities and are interdependent on others, but sometimes my dependency grates on me. Now, you see? I'm being terribly ungrateful. Next thing you know I'll be talking to your crotch.


  1. NO, Stephen, THANK YOU for writing this blog. PLEASE continue to make us smile, laugh out loud, cringe or feel genuinely embarassed that we do the very things you moan about! So PLEASE don't worry about saying things that will make us stop reading. THANK YOU! Brian

  2. Have you seen how we treat 'old' people? I would say mate that give 30 or 40 years we will all be in the same boat as you, being treated like a three year old with no real opinion on anything "ah bless".

    Keep ranting buddy...we need to get this blog into the more public domain as I have heard many others say what you are saying, but not so eleguently, and yet we still don't listen!

    Have another cup of coffee on me!!

  3. I understand. I have a problem which is sort of a variation from the first grit you mentioned.

    I can't turn my head to the left or right much at all. Sometimes people will address me from the side, and I have to "look" at them with my peripheral vision. This especially happens when I'm sitting at a table. I can't tell you how many times I've been introduced to someone who was either behind me or next to me.

    Also, I have an understood policy of not continually thanking someone who is a frequent carer of mine. I think it can be awkward for both parties at a point.

  4. Hey, Stephen. I totally identify with all of your moanings but especially the last one about living around attendants' schedules. For instance, when I was a teenager, I often had to go to bed at SEVEN O'CLOCK because my attendant back then was so slow at everything (not to hate her, she was great). Or nowadays, some of my attendants have to come in at 6 30 am on saturdays to get me up!


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