I've been writing things to post on here and deleting them and writing and deleting and writing and deleting on and off all evening.
Ever since I upset several people with a post some weeks ago and then deleted it at my mum's request there have been several things I would have written about or could have written about here and I haven't. I guess I'm worried about upsetting people again. And there having been things I have posted here which hasn't had all the details it would previously have had.
Then today I managed to if not upset than definitely shock and distress several people in a face to face situation. Neither time did I realise that would happen. The first time, with my blogging, I will readily admit that I was in the wrong. I (perhaps wrongly) don't think the whole of the blame lies with me but I definitely played a huge part in causing hurt. Today, however, all I did was express my opinion and have it be very different to the "norm" opinion that everyone else had based on the same thing. I don't think I'm wrong this time but knowing that others think I am is tough.
This is my entry and attempt at claiming some of it back. No more bad juju for me (I hope!)
We were sat having a drink and someone came over and said "you see over there? that's so and so and she's new, she has blah blah blah (personal family info) and then this happened and she became disabled."
And on hearing it other than thinking that the person telling us probably shouldn't have been I thought "oooh. that must have been tough and it could have been sooooo nasty." With everyone else, however, it seemed to be a case of stop all the clocks, get out the black banners and mourning clothes, we better throw the girl a pity party.
As a life long disabled person i don't know what it's like to wake up one morning and suddenly have switched from TAB to PWD, I imagine it's probably as scary as the very idea that I might wake up tomorrow and find the same has happened in reverse to me. Equally i don't know what it's like to be planning a joyous thing and then have things happen whcih could turn it into your worst nightmare (not referring to disability here). The first is something I can never know, the second something I hope I never know.
But what I do know is that pity doesn't help. In my opinion, pity makes it worse.
So everyone else sat there and muttered things about her being too young for that to happen (I was the youngest by probably 30 years in that group of friends) and how scary it must have been and blah blah blah how sorry they felt etc.
I, of course, stuck my foot in it to a certain extent with my comment that actually I didn't feel sorry for her, I didn't see the point. I said I agreed that it was one of those suck your breath in slightly "oh god" situations but that I thought she was lucky because she could have had it much worse as a result (or she could have died.) What \I didn't get the chance to share/say is the fact that acceptance and moving on help a lot in a friendship or support situation. Get to know her/me/whoever as a person and ignore the disability. It shapes it does not confine and it only in some ways defines.
Obviously, I would never go up to anyone and say "hey that medical situation you found yourself in must have been really scary you lucky, lucky, thing, you."
But how I wished in that group of supposed disabled people (most of them are older generation who've had strokes or aging related disabilities) I'd had my people there who got that you know what, disability isn't a bad thing. And how I wished so called professionals who have done disability awareness training didn't feel the need to share confidential information and identify us by our disabilities. Because saying something like "that's Em with CP over there" really sucks.
I don't like feeling like I'm in the wrong. I'm not in the wrong here (I think)
And I like it even less so when I actually am in the wrong.
Saturday, 10 May 2008
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3 comments:
Thank you Emma for your perspective as I certainly enjoy reading. There are many different ways to look at almost every situation and although things happen that can be shocking and bad luck, in the end it does have to be dealt with and you have to move on and try to make the best of it. So, no, I do not think you were wrong to express your opinion as you are perfectly entitled to have one, just like everyone else does.
BTW: I did not read the post that you deleted, but I did read your apology and I thought that was extremely gracious of you to put up on your blog. Anyone can make a mistake, but it takes a good deal of courage to admit it as openly as you did.
I think the thing to remember with a sudden disability/a child being born with a disability is that it's a process of grieving. Grieving the previous expectations and life. Acceptance is I agree the favourable final destination, yet many people don't get there as they don't wish to/can't. So, I guess the pity response would be understandable if the disability was very recently acquired. Outsiders get their cue from the person, so maybe she is still in the grieving process. Helping people to the acceptance stage is difficult and one I have learnt to step back from, due to frustration.
as for identifying as xx with Y - sad to say it doesn't surprise me.
As Sair said, there is definitely a grieving process when hit with sudden disability/illness. Everything you knew is turned upside down. You have to adapt to huge new changes, and re-evaluate your future, your identity - EVERYTHING. In many cases jobs are lost, friends are lost, independence is lost - at least, until you learn how to regain it, which takes time and depending on the disability sometimes isn't possible. You might (as in the case of many ME or MS patients) be forced to move back in with your parents and have them care for you, which can feel quite degrading to a twenty- or thirty-something who has been self sufficient for years.
I think that living with disability is something that has to be learned. You don't go blind (deaf, paraplegic, etc) in an accident and adapt to it overnight. It takes time to learn how to live without something you've previously relied on. You are as independent as they come, but if I woke up tomorrow in your body, I would be clueless... which I'm sure is how you'd feel if the situation was reversed.
This is not to say I think you are wrong. There comes a point where you've done all the grieving that is reasonable, and you have to look at what you DO have and decide where to go from there. Life doesn't end, but it does change, in ways that you never asked for and never wanted. I think some pity during the initial grieving stage is appropriate, but empathy and encouragement is more important/productive in the long run.
Just my two pennies! x
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