Anyway up...
Seahorse over at The Beauty Offensive has been discussing her journey in coming to accept her disability, her new status as 'a disabled person' and the acceptance (or otherwise) of this status by those around her.
Reading her post I was moved to post my own comment and this, dear reader, is the power of blogging, because it was only in the writing of the comment that my own rather muddled and convoluted thoughts on the subject presented themselves to me on the screen.
I must admit I was rather pleased to have my ideas and thoughts presented so clearly to me and, having read Seahorse's response I felt I wanted to re-present them on my own blog.
So here they are, with apologies to Seahorse ( who is a very perceptive and lyrical personage).
You open up a really important issue.
Having worked with people with a disability for years, then having a son with a disability and now having become unwell and starting to realise that I am disabled, my life has been(thus far) an unfurling of understanding.
I’ve known about the social model (of disability) for years but it’s a different bucket of eels when you begin to think it might apply to you. I think we all have a degree of misunderstanding about others’ conditions and issues. What counts is acknowledging that and being prepared to listen to others and hear our own prejudices too.
My own difficulties are hidden. No one would know the difficulties I have from day to day, moment to moment and how hard I try and have tried to ‘pass’ as ‘OK’. (Now I have reached a stage where I don’t know why I tried to hide it ). I even did that when I worked for a charity that was all about promoting the rights of disabled people. Many other employees used wheelchairs or were deaf or visually impaired. Somehow, I felt that because I didn’t need those things I wasn’t really ill, wasn’t really disabled --- didn’t have enough points to join the Club (as one quite well known disabled artist said to me only partially in jest ‘I can call myself a crip because I am one. You can’t call me that because you’re not’!). It’s all about perception --- by yourself about how and who you are and by others about what they regard as
‘disabled’.
One more little story told to me by a friend who has a son who is autistic:
She went to a party with her three children, one of whom is autistic. He has only just reached the stage where he can tolerate such social occasions and where his mother feels secure enough to take him.
Shortly after they arrived she noticed a young woman staring and staring at her autistic son. (He has quite unusual mannerisms which can bring unwarranted attention.) My friend tried to ignore the stares and brush it off as the woman’s ignorance or her own paranoia. The young woman still stared and stared.
Finally my friend could bare it no longer and addressed the young woman directly:
‘Will you please stop staring at my son. He has a disability. He is autistic.’
Over her shoulder an older woman’s (the girl’s mother’s) voice said,
‘So is she’
Yesterday, another friend was asking me about this whole subject and where I thought I was with it all now --- after 7 years at home. If it wasn't for Seahorse I would never have been able to explain myself so succinctly, so thank you Seahorse for bringing the whole business to mind.
7 comments:
And so the tide of awareness and strength and acceptance (plus a large dollop of the Social Model)marches on. Thank you for writing here.
But as recently observed back at my site, the achievement in communicating to someone is your on. It's just that having shared experience and ideas floating around here really helps.
We simply do not take enough notice of discrimmination and equality for all in our society.
There is no longer any excuse for not thinking about our fellow human beings. She said in a self rightous way after just having a rant about fat people.... OH dear, not quite the right spirit perhaps.
px
I've given up on thinking about how I am perceived by others re the 'disability' issue.
I have totally accepted that people judge on appearance and age, and that well people want to see some evidence of disability like a wheelchair or a white stick. If you don't have these, and you don't work, you are stigmatised as being a scrounger. Not just ME/CFS, but other hidden disabilities/chronic illnesses. So I keep schtum about my situation until I know someone well enough and feel I can trust them.
I've long given up on trying to educate people about ME because they just don't get it.
I've often said that I don't want my identity to be an illness, and I don't particularly want my identity to be 'disabled', despite living with restrictions and being unable to live independently.
I also resent that I ought to be behaving or looking like some stereotype of what a disabled person is supposed to be. There's almost an expectation to have a particular personality type or attitude. Mild mannered, passive and 'nice'.
Perhaps I have been ill for so long that I've gone beyond the 'coming to terms' phase - even though that never really goes away. I also accept my disability even though I know others don't and never will.
Dear Seahorse, Pixie & Digi,
Thanks for dropping by.
I agree that, of course, the onus is on oneself to communicate one's situation.
By and large in real life --- as opposed to virtual life where I can say what I want and feel more freely --- I tend towards Digi's tack: I never mention my 'condition' to people until or unless I know them well. Most people don't want to know, don't need to know and some just don't 'get it' when they do know. However, I don't hide it anymore either, I don't make excuses and I don't apologise.
In a benign rather than an aggressive way, my philosophy now is 'take me or leave me': I can do what I can do and no more. I'm sure I made myself more ill by all the pretence and trying to keep up with other people and, as I said, that was exascerbated by my own skewed notion that I didn't have a right to complain about my situation when I worked with people who were wheelchair users, or deaf or visually impaired and 'really disabled.'
In fact they all had/have a lot more energy than me and are still working there 7 years on. However, what interests me is that there does seem to be a sort of 'hierarchy of disability' in some people's minds. For example, one of the people who I used to work with met me in the street about a year ago. She is very energetic, very knowledgeable in her field and quite formidable, so when she implied that I was a kind of malingerer and not really disabled I was crushed and surprised and then angry.
My comments on Seahorse's blog and then here on my own blog were really meant to highlight the whole muddled thinking and double standards of all of us when we look at other people and judge them. You cannot judge others' abilities. You have to judge people by their actions and I think one's first duty is to oneself.
I think the business about identity is interesting too. I certainly don't want to be seen as a PWME. I'm me first and anything else afterwards. In fact when I started this blog several years back it was supposed to be a space where I could escape the ME and be 'just me'. Inevitably, as other people in the same sitaution have found, the old ME creeps in and you end up mentioning it anyway because it has such a big affect on everything you do.
At one point, this depressed me so much that I stopped blogging all together. Now I just think that the ME is a part of me just as much as my brown eyes, creativity or two children are another part of me and those aspects are bound to be reflected in anything I make, say or do which tells about my life and my journey.
I think I'll leave it here, because otherwise the ME will have won and I have other jollier posts to put up in the near future. Nevertheless it is good to discuss the issues and maintain a shared experience and 'keep ideas floating around'
ok, but - I also think there can be a way of focussing on the M.E. reality of life without the need to be either jolly or miserable. A way of looking and stating that this is how it is - and some bits are interesting as well as all the other things.
I like the story, btw
Ah, dear Signs, welcome back. Glad the beef tea and Santogen has been working !
Well yes, like I said, now I juts think this is how it is, this is how I am, take me or leave me and, by that I mean just get on with it as best you can. Mind you, I'm not really sure that ME is very interesting to anyone except PWME and even then, I find I'm less and less interested: more interested in other aspects of life
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