I notice there are plenty of people, who tell me not to give up campaigning, but very few give what I feel, and why I feel it, the time of day.
This is not something which is just 'Helen being difficult, again'.
This is a feeling which is real, and which is spreading among lifelong campaigners - that we aren't heard, and that the cause is rapidly becoming about egos, rather than people.
It's particularly hard for us 'lifers' - (those with lifelong disabilities), who can see a cause we LIVE, (and have lived, for many years) being used, to further ambitions.
When we criticise or speak out about this issue, we get accused, (by the self appointed hierarchy), or their minions, of being jealous, or creating divisions, where there aren't any - but, there are.
All our years of experience, don't seem to matter, because there is a feeling amongst others, that 'lifers' should be 'used to it!'
The fact is, it is just as hard for us. It is possible to grieve for something you've never had - and it's heartbreaking, to know that you will NEVER have it!
Please don't belittle us, or tell us that what we're feeling, is somehow wrong, - it isn't.
Many lifelong campaigners, fought to pave the way, for what people (new to illness or disability), have now.
Many of us know different ways, of getting things done, and different strategies, to raise awareness of our situations, because we have had to do it - always.
It's not something we have come to, just because this government started treating disabled and ill people. like shit - and it's not something, that we will stop, when this government, finally goes! It is LIFE!
I don't mean to imply that people new to disability or illness, have it easy. I can't imagine what it must be like to have something, and lose it. It must be awful.
What I'm trying to say is that, to a certain extent, divisions are natural, because of the differences - and yes, we might be able to work together, if we found common ground, - but from my perspective, (and that of many more lifelong campaigners), that common ground, is difficult to find, while those with egos, (and ulterior motives), are making mistakes, and making it about themselves.
That isn't me being nasty, or bitchy, it's me, being honest, and trying to tell it, like it is.
I said a long time ago, that if things carried on the way they are, then a lot of lifers, and lifelong campaigners, would end up feeling awful, and unheard, and they'd quit. Unfortunately, I think that is starting to happen now. I might be one of them.
What it comes down to, is that no one should be, (or feel) excluded,because it needs all of us, to fight this government.
I tend to stay out of groups, not because I'm anti social, or rude, or that I feel I'm better than anyone else. It's just that I feel, some of the decisions, and 'group politics', are a distraction, from what I know I need to do.
Over time, as a campaigner, and as a person too, you get to know what is effective, and what works best, for you.
I'm not a difficult person, and I do listen to others - as most lifelong campaigners, do. We wouldn't be still doing this, if we didn't.
I know that, going into things with a tough,aggressive, 'in your face' approach, isn't the right way to do things. Actually, it just gets people's backs up, and it makes a difficult situation worse.
Equally, I know, that there are some groups and organisations, I feel we shouldn't be negotiating with, because (from experience), I know that, often, what you give them, can be used against you, and backfire.
I'm not writing this to hurt anyone, or make things difficult, I'm writing this, because it hurts me so much, to see a cause I love and believe in, (and have done for twenty five years), changing beyond recognition, and not necessarily for the better.
I'm sick of crying over it all, and having a nasty, churning, feeling in my stomach. I have to say something - or I have to quit - and I'd rather not do the latter.