Thursday, 22 January 2015


At the end of the day, it doesn't matter what anyone thinks of me, or what any other campaigners think of me. I'm here for the cause! I am upfront, honest, and I fight tooth and nail, for what I believe in.

If I feel something's wrong I will say it, because that's who I am. What you see is what you get. I hate egos, game playing, hierarchies, and unfounded accusations. 

If anything will make me quit campaigning, it's those things because they're not what I'm here for. I'm here, because I care and I want to help make things better, for all of us.

Not everyone can agree on everything.Disabilities are different, people are different, and so are experiences. Not forgetting, that this government has put disabled and ill people, under unimaginable pressure, and stress! Sometimes, it can feel like a pressure cooker, as we all fight, (more and more desperately), for basics, and against, hurtful 'scrounger rhetoric'. It's understandable that there will be tension!

Having said that, I'm all for 'unity' where it's possible. If I didn't believe we had some things that united us, and a cause to fight for, I wouldn't still be here.I would've let the group politics, egos, and hidden agendas, I found when I first brought  my campaigning on line, (and still find now), get to me, and I'd have walked away but I didn't!

I've done this for twenty five years of my life. THIS is my life and I think sometimes,others in the campaigning world think I'm being difficult, but I'm not.

The fact is, those of us who have had our disabilities since birth, tend to see things differently. Having to fight, sometimes goes with the territory, and we have always had to fight. We have fought for the things that people new to disability (or illness), have now, - and that's why we need to be heard.

Many of us ('lifers)', feel we aren't considered in the campaigning world. 

We feel we aren't wanted or valued, and the 'newbies' (for want of a better phrase), shout louder, make the decisions, and are heard!

There seems to be a strange idea that 'lifers' should be 'used to' our disabilities, and that we 'have it all covered'. We don't. We hurt too, and we also struggle day in and day out.

Just because we have dealt with it, longer, it doesn't mean we struggle less, and yes it is possible to grieve for what you've never had. 

There is a part of me that grieves every day for the children I can't have, and the things I have never, (and will never), be able to do.

That is what should unite us. We have all lost something and our lives are not like other people's. There is a long road to acceptance, and we're all on it. I think I for one, always will be.

Many 'lifers' find the way campaigning is being done now,difficult. 

We started our campaigning lives before the days of internet groups and the campaigner hierarchy- (many people will probably hate me, and want to deny that the hierarchy exists, but it does)! We didn't even see ourselves as campaigners. We were just doing what we felt was necessary and right.

Hierarchies and groups tend to mean less to us for that reason, and experience tells us that sometimes, groups take 'the cause', in a counter-productive direction. It's hard for us to watch that happen, so we pull back.

Of course it doesn't mean we're right, but it would be nice to be thought of, asked, and at least listened to. I know that  it is very difficult but it really would mean so much to have our experiences heard.

Unity only happens when everyone's feelings, experiences, and ideas are heard, (or at least, as many people as possible), but we don't have that, because so many people are, (or at least, feel) ignored and unwanted.   You can't make it happen when some people shout loudest, or think they have the 'right' to speak for others. 

Nobody does, and nobody can.

I don't claim to speak for anyone else and I never would. I simply tell you,what I'M seeing, feeling, and being told.

Please don't think that I'm creating 'divisions' and being difficult. I think the 'divisions' are already there! We are human beings, not robots! It should be okay to see things differently, but at the moment it feels like it's not. That needs to change.

It's the government we need to be fighting, not amongst ourselves. Equally though, we cannot go on pretending these issues don't exist. It does more harm than good.

 I believe that the cause is bigger than any one person, or anyone's ego, and it must come first because, when it does, we can and we will, win!   



  1. Bravo! Well said! This campaign is more important than any one individual.

  2. Excellent. You also summed up my feelings as a 'lifer' wonderfully