Sunday, May 03, 2015

The Blog That Joe Should Have Written

Photo description: A drawing of a smiling face wearing a nurses hat.
I tried to convince Joe to write this blog post. He was steamed enough that I thought he might just do it, but, in the end, Joe is not a blogger. It's too bad too because anyone who's received one of Joe's emails when he's in a whimsical mood knows that he is a really good and really funny writer. But, he said no.

We were in the Calgary airport waiting for our flight. We had a bit of time so I spent it wandering around the various shops looking at stuff and generally having a nice time of it. I'd made friends with my manual chair again and was enjoying the physicality of pushing myself around. I typically use my power chair at home and have travelled a lot recently with it in a rented adapted van, so I hadn't used my manual for anything other than around the home or around the room travel.

I'd finished looking around and went to join Joe who was sitting, alone, at the end of a long bank of chairs. I put my brakes on and he said, "You won't believe what happened," he then thought better of it and said, "yeah, you will."

I was curious now and asked him what was up, I could tell he was steamed.

"I was walking by one of the booths in the middle of the hallway and one of the women called me over. She asked if I was with the man in the wheelchair pushing himself around. I told her that I was. She then asked me how you ended up in the wheelchair, what your diagnosis was." I could see as he told the story that he was getting angry again in the telling. "I told her that was private information and none of her business. She started to say something but I walked away from her. Can you imagine that, she asked me, about you and expected that I'd tell her. A collusion of two non-disabled people discussing a disabled person. I was supposed to be part of that!"

This is the first time something like this has happened to Joe. It happens to me fairly regularly, people feeling they have the right to information about my health and my disability and getting offended when I don't answer their questions. The auto-superiority of the privileged to privileged information is astonishing.

I remembered the time (Susan, Belinda do you remember?) when we were having tea with friends and a woman asked me about my diagnosis and I told her that was private information, she responded with, "It's OK, I'm a nurse." From that moment that phrase or variants of it have become part of the Dave and Joe lexicon. We are aware, of course, that most nurses are wonderful, compassionate people with a great set of boundaries, but that experience was one that really stuck with us, so, it became part of how we express ourselves.

I said to Joe, "Well ... maybe ..."

He finished, "... she's a nurse! Of course!"

People must have wondered what we found so funny.

A sense of humour folks, a sense of humour. If you are going to make it having a disability or loving someone who does, a sense of humour is necessary.

Take that as fact.

We heard it from a nurse!

12 comments:

  1. WELL, if a NURSE says it - it MUST BE TRUE!
    ;-)

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  2. Another answer Joe could have made (and it would have served her right): "If you want to know so much, why don't you ask HIM?"

    The 'man in the wheelchair' would them grill her on her right to his personal information - and Joe could stand there and watch you do it.

    Amazing, what people will do and say.

    Alicia

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  3. Of course I remember. It was that I knew without a doubt that you really can't make this crap up. I was stunned and embarrassed - and it was a learning opportunity for me. I was completely taken aback at that time, but if it ever happens again ( and I'm sure it will but let's hope it doesn't) I'll sure know what to say! And it might not be funny! ;)

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  4. I love that you were able to find the funny, as it were, and use it to carry on with things. What a great team!

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  5. Well, I'm a nurse, but I try not to be one of "those" nurses! I'm glad you and Joe could laugh at this, and that you have a great "shorthand phrase" to use to lighten the moments when this kind of carp occurs....

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  6. I have a purple vein that sticks out on the front of my neck, near my Adam's Apple. People regularly ask me what it is, apparently concerned for my health. I tell them that it's just a vein, and that my doctor said I don't need to worry about it --- just leave it alone. It's the simplest answer. I think these people mean well, but to avoid their questions, I sometimes put makeup over it.

    I occurs to me that you don't have that option.

    One time, I went to a local medical clinic to meet a man who has quadriplegia and uses a power chair for paratransit. Upon seeing him in his wheelchair, a little boy started giggling, ran up to him, and tickled him up his arm. It made the man happy. He smiled about it for months afterward.

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  7. Nice to have the nurse "explanation". Totally get the humor.

    I only have such examples of people insistently/persistently asking such inappropriate questions and how I learned to get them to stop. Might help that when I'm angry, I get a tight smile and consider my words carefully.
    1) Due to rapidly worsening disease, I first used a wheelchair at 22. While I stayed in the area where people might have seen me walking without assistance, it was common for strangers to approach me with a question like "What did you DO to yourself?!" I learned to answer by matching their tone (like they were expecting a skiing accident) but say something like "I had the audacity to get a progressive neurological disease. Can you believe it?" Shocked and shamed them while making them go away without making them privy to my Dx so they're less likely to give unwanted advice.
    2. For folk who insist to know my Dx and everything about me and my disability/illness, I learned from a lady who saw fit to ask at least half a dozen intrusive questions while I was browsing a rack of underwear. When the question was "How long have you...", I plainly answered, "A while..." before taking on an even more saccharine tone than she did "...and how long have you thought it was ok to ask strangers such personal questions in public?" Rude, but when someone just won't go away, I find it helpful to mirror their tone and turn things around on them. The lady in question, fwiw, even this wasn't quite the end of it. After that, she begged forgiveness. Repeatedly. I told her that it would be a lot easier to forgive her if she would BACK OFF, after which she gradually sulked away.
    If I'd had the nurse and she didn't end it at that, I'd probably respond with something like, "And you think that makes it ok. Interesting," as if I were tasked with documenting her unusual behavior.

    @Antonia:
    I think some people feel compelled to point out the obvious. Like when my legally blind boyfriend is out at a bookstore, browsing with his nose literally at the page, people will bring him magnifier sheets unbidden or suggest, "I think you might need glasses."
    But it's not limited to disability. When I was in high school, in my second class of the day, I gave an oral report about Tennessee for teacher who gave points for creativity in presentations. I talked it over with the first hour teacher and she agreed that I could make a visual aid right before that class. So toward the end of the first hour, I took out face-painting crayons and drew a tri-color map of Tennesee on my forehead complete with major populations and interstates. I guess I should have asked to be let go a couple minutes early, because on the short walk down the hall took me so much longer. Three students felt they had to stop me and take me aside: "Do you know you have something on your forehead?!" Even if they didn't recognize the map, the drawing was obviously complicated. I can't imagine how they would think that it was drawn without my knowledge, that I hadn't come across a mirror, and that everyone I'd seen before school and/or in first hour were scheming to keep me ignorant of the fact. Seems to me the answer is probably that they weren't thinking. They saw something they didn't know what to make of and they couldn't just let it go. Might have been a fifth of the people that passed me in the hall, but the ones who just passed by or simply noticed and went on aren't memorable.
    I suppose the people think they're asking about your vein for your health just as these peers of mine probably thought they were saving me embarrassment, but I'd bet it starts with "unexpected: must comment!" Silly people.

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  8. Oh my goodness, yes, I remember that time, and other times, when I saw strange things happening right before my eyes!

    I'm afraid I would have been just as shocked and outraged as Joe was. I think I actually might have said, "I BEG your PARDON?" and fixed the person with an unbelieving LOOK. I think they'd get the message...Unbelievable!

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  9. Now I'm craving an actual guest blog entry by Joe sometime.... Please, Joe, pretty please? :)

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  10. The last time it happened to me (although not the first) was while my husband and I were on holiday. We'd gone into a gift store at a tourist attraction, and a member of staff said the usual "if you need any help, just say!" and when we got to the counter the usual "are you having a good time at (attraction)?"

    We were, because it had good wheelchair access, and I noticed that under her name tag was a badge to the effect that she knew BSL and to let her know if this was your preferred language. So I said I was having a great time and it was wonderful that (attraction) paid so much attention to different kinds of accessibility. She agreed, yes, they'd paid for her BSL qualification and also every single member of staff had done Disability Equality Training, mandatory. Purchase completed, I said something about how it created a very welcoming environment, and left the gift store. Then looked around in puzzlement. My husband hadn't followed me out of the store.

    Yep, he emerged a moment later, red in the face. For all her equality training, this woman had thought it appropriate to get his attention once I was out of earshot to ask what was "wrong" with me. And apparently seemed to want a cookie for having been so tactful as to not mention it in front of me, because... I don't know. She thought it was better to separate me off from my partner?

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  11. "Oh really? You're a nurse? How much do you earn?"

    "It's okay, you can tell me I'm an accountant!"

    (In case you don't know, here in the UK salary is about the most inappropriate question you can ask anyone)

    Gill

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  12. I . . . being me, would have taken that as an opportunity for some impromptu confabulation. I mean - if I were Joe and could get a stranger to come up to you with tears in their eyes thanking you so much for your sacrifices for the greater good, well . . .

    My wife says I'm not an easy person to live with. Not boring mind you - just - not easy.

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