Tuesday 18 November 2008

An Ungrateful Entry

My friend Shiloh is hosting a gratefulness blog party today.

I don't feel particularly grateful at the moment and haven't for a while.  There seems to be a lot of things going around where people do things for me that I haven't asked for and or don't want and then when I express that get mad with me.  

One such example was a few weeks ago when a new carer told me that after her first visit to me she had spoken to the coordinators about certain issues and had discussed them in detail along with how I felt and what I thought about them.  Two problems here being I hadn't asked her to do so, I didn't and still don't think there was even an issue there let alone one that needed to be discussed (she had asked me a harmless question which related to the fact my support isn't done by the book and it became an issue) and having only met me once she had no idea of what I actually do think and feel about it.  It was very obvious that she expected me to thank her for that.  instead my response was to ask why she had done so and I didn't thank her when she gave it.  I told her I would expect the coordinators to call me to discuss the matter and she told me they would have no need too which I obviously disagreed with.  I've not heard from them however but I have had that carer removed from my "can come here" list.  There are other reasons beyond that why I had her removed but it was the "straw that broke the camels back"

I am very grateful for things that people do for me when they put themselves out (and even when they don't) - I also have a health dose of the gift that keeps giving, guilt, about having to have help.  But just because you help me out don't expect me to agree with you.  There was an incident the other week where I expressed an opinion which was disagreed with.  I stand by what I said but admit that maybe I snapped a bit and I have apologised for that several time.  I got exploded at for that.  The opinion I expressed (please don't lean on my wheelchair) had nothing to do with what the person I said it to helps me with.  They reminded me that they don't have to help me and I should be grateful for what they do for me.  I told them I do appreciate it but was told they doubted that.  Various other things were said on the subject (to me) but aren't relevant now) Tempers were a little frayed but I'm still not sure why unless I did snap.

The incident is now resolved and "forgotten" by those involved but remains with me.  Not necessarily/really the details but the idea that I must be grateful for something sometimes even to the extreme of not expressing an opinion for fear of upsetting someone.  I obviously haven't let it stop me but it did happen and it's there.  As a sort of "well I didn't expect that to happen but it did and lets move on" type thing.

As grateful I am for my life and the people in it, I really don't like the charity ideal we seem to have in this country which suggests (or appears to at least) that because I am disabled and need help I am less of a person.  It seems many people seem to think I should simply accept help and comments made to me regardless of their necessity, validity or whether they were needed/asked for - and that I must of course be grateful for it.  I also really don't like the idea that if I am "ungrateful" I could be making the situation worse for others in the future - I've had people say things like that to me too.

A big thing I've noticed is that this "grateful"/charity attitude seems to come at me either from people I don't know or from people I am only acquaintances with.  The majority of people who I count as friends aren't like that.  Which i am, obviously, grateful for.

I know I have something of a reputation in some circles for being "difficult" and even ungrateful.  Shortly after I moved here (almost three years ago now!) a carer came for the first time and reported back to her supervisors she had never met a more ungrateful argumentative demanding little madam in her life as me.  My floors are all vinyl tile (well I think it is vinyl) with the exception of the bathroom and kitchen which are non slip.  No carpets as it's not practical with the chair.  She spent ages telling me how I must get carpets put down, I wouldn't be able to manage without carpets and how it would be really cold if I didn't.  She wouldn't have it when I explained that my wheelchair would ruin carpet (out in the rain then in onto carpet?!) or my pointing out that it was January and it was nothing like cold in my flat.  So that made me ungrateful and argumentative but I don't care.  And if people think my knowing what I want people to and asking for it makes me demanding than so be it.

As I was saying I have something of a rep.  In the second incident I mentioned I must (and do) take some of the blame for being at fault.  Even though what I said was correct how I said it was wrong and I suspect a lot of what got said about how I "should be grateful" etc would have been left unsaid if not for that.  However the others are just a product of how I was brought up - to stand up for myself and be an advocate.  I quite like having that rep and I won't apologise for it.

I am grateful for many things in my life but they are things I think I should be grateful for.  But it still remains the fact that there are a lot of things in this world society expects me to be grateful for.  And for a lot of those I would have to change my thoughts, beliefs and even who I am to do so.  I hate that with a vengence and I refuse to do it.

So this is my ungrateful entry for the gratefullness party.

7 comments:

Sally said...

Hi - I love this post. Love it! I am the mom and chief carer for my 14 year old daughter, who is the subect of my blog. I feel like she could have wrtten this - if she could write. I am often her voice and it's easier to have the other carers be mad at me than at her, but I'm saying the same things you did. And I'm certain there are plenty of times my daughter wants to say those things to me.

rickismom said...

Yes, I have a friend who is blind, and she gets this ALL the time. "helpfull" people on the street trying to take her where she doesn't want to go, talking to her friends instead of her, telling her what to think. And yes, she gets VERY peeved by it, and is know as "difficult". Hmmmmmm

Rynhardt kruger said...

yeah, as a blind person I know this kind of treatment very well. Even when I am walking with my cane some people want to tell me how I should walk, and I feal like saying "I've been walking with a white cane for 11 years, I think I know quite well how to do it. Thankyou!".

Mary Riches said...

'Congenial to other people?
It is with yourself
That you must live.'
(Dag Hammarskjold)]

So don't let them get you down , Emma.

Ettina said...

On a listserv for autistics, this guy posted recently asking us for help with this thing he's trying to do to help autistic people. Some of us complained about how he talked about autism and asked him some questions about what he was actually planning, and he started verbally abusing us. One thing that really offended me was that he called us 'ungrateful', as if just wanting to help us is worth gratitude regardless of what it is he plans to do.

terri said...

Gratitude is a person's own internal sensation--it cannot be created in you, demanded of you or 'bought' from you by others. No matter what they think they have done for you!

GRRRR--and the nerve of paid carers demanding that you also pay emotionally... I wish I were their supervisor!

Bladdergirl said...

Dear Emma.
I hope you don't mind but I have linked your amazing post on sick and tired. I can relate to this. I tried to comment on it but its closed.
I have read many of your other posts and found them to be pretty amazing. Keep it up, your an inspirational woman!
Kind Regards Kirst.

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