Step Inside My World

An invitation to Maria Miller (Cons)

Minister for Disabled People

Step inside my world, Maria

And I wonder what you will see

A world of differing greys is there

No colours no, definitely not for me

Step inside my world, Maria

And I wonder what you will see

My huband, myself and my children

Children One and Two, but thankfully not Three

Step inside my world, Maria

And I wonder what you will see

Many differing flashes of light

Representing the physical pain hidden well inside of me

Step inside my world, Maria

And I wonder what you will see

An individual with a (promising) career in banking

That is no longer there for me

Step inside my world, Maria

And I wonder what you will see

A person who has worked all her life

But is no longer able, so it's DLA for me

Step inside my world, Maria

And I wonder what you will find

Someone fighting for her dignity

And the sanity of her mind

Step inside my world, Maria

And I wonder where you will be

When I tuck my children in at night

Knowing I can never ever hug them tight

Step inside my world, Maria

And I wonder what you will find

A bewildering array of drugs for me

That will keep me going (I hope) until I leave

If you step inside my world, Maria

My life is not as it would seem

An independent woman now stuck at home

Relying on others for help, poor little me

Inside what has come to live with me, Maria

Is a monster much much bigger than you would believe

Its name is Mr Parkinson's

An old mans disease I thought (stupid stupid me)

So if you come into my world, Maria

You may find life is not at all as it seems

Each day is a struggle to move at will

Even to an ordinary person such as me

What would life be like for you, Maria

Were you such an unfortunate as me?

You cannot imagine it can you, my dear

Until it happens to one such as you (maybe) and not unlucky me

But I am one of the lucky ones, Maria

I have a pension so you see

My mortgage – it is history

Oh so so lucky me

Others are not so fortunate, Maria

If only you could see

Their homes they wont afford to keep

It'll be a struggle for them, but not for lucky me

So don't step inside my world, Maria

Don't imagine what life is like for me

Even though some days it's filled with laughter

It's laughter mixed definitely with that of fear

So don't step inside my world, Maria

To witness the world of horrors awaiting me

Some days I can move and dance through life

But it is not always there, believe me, believe me

I don't want you in my world, Maria

I don't want to be there either - no not me

It is definitely not a bed of roses

Poor poor little old me

Dedicated to the passing of the Disability Living Allowance

and to all those who will suffer financially as a result

Jo Collinge

Person with Parkinson's

Diagnosed July 2010

Retired from Lloyds TSB January 2011

Banking, Politics and Me

I did toy with the idea of calling this blog “The Importance of Being Earnest”, but then thought better of it, as the subject matter is not a trivial comedy for serious people, unlike the stage play of the same name by Oscar Wilde. It is instead a very serious subject that concerns a lot of people in the UK at present. It is more to do with a world that is alien to me, that being the world of Politics. Even as I type this it feels strange to be discussing this. I am the archetypal floating voter – seriously – I never ever decide who I am going to vote for in general and local elections until the very last minute. In fact I have even been known to get to the ballot box on one or two occasions and still be undecided. I always consider who I am going to vote for, read all the literature, discount those candidates who cannot be bothered with even putting anything through my door and then side with the party I think has got the best deal on the table. Interestingly, my vote invariably ends up the same party! That said, I annoyed my elder daughter in the last round of the general elections, as I never ever tell anybody who I vote for, and my refusal last  time to go public seriously annoyed my first born. Even after 25 years of marriage my husband doesn’t know who I vote for. That’s my constitutional right, and I’m sticking with it!

Apart from a brief “flirtation” with politics when I was 18, canvassing for my brother when he stood in local elections as a Labour party candidate in a traditionally Conservative ward, I have never really taken much interest in the subject. I remember I really enjoyed the canvassing, Ant did well all things considered (a small swing in his favour), but my best friend at the time, a staunch Conservative, refused to talk to me for about 2 weeks, until I told her not to be so silly.

And that was the last time I took an active interest in politics, until about 2 weeks ago that is. The last few weeks have been momentous for me, as officially, at 2:30 pm UK time on Monday 31^st January, I left forever the hallowed halls of banking (namely the one with the black horse running amok on a beach somewhere) and officially entered the world of the retiree. A little earlier than planned, I must admit, but my mate Parkie had a lot to do with that decision. But it was also momentous for another reason. It marked my sojourn into the world of politics again, not just once, but twice, to lobby politicians about the proposed changes to the Disability Living Allowance (DLA). Lobbying is something I have never ever done before, never thought I would find interesting, and I hate to admit it, but I think I have got completely and utterly hooked!

Had someone told me two years ago that I would be doing such a thing I would have told them to get lost. “What me, talking to politicians – nah!” But, that is what I have been doing. I was asked by Parkinson’s UK to join them as a patient representative of the charity, as they are concerned, as are many others, about the changes to the DLA and I agreed to go with them to Portcullis House on two seperate occasions, to speak to members of the Liberal Democrats and Labour parties. I even took the opportunity to speak to my own MP whilst there. Before the meetings, I did my research, and read up on the proposed changes and very quickly realised that whilst the DLA needs a radical overhaul, the radical overhaul in itself was a potential minefield and was going to result in a lot of disabled people, who rely on this payment, being seriously disadvantaged. I also came to the conclusion that it was going to seriously disadvantage the Government, as the changes were going to cost a great deal of money to not only implement, but also administer going forward, money which could be better diverted elsewhere. It wasn’t right, so with my business analyst hat on, I spoke out and put forward my views.

I am not going to say what those views are in detail – that is between me and those I spoke to. I even had the temerity to put forward some proposals of my own. In my opinion as a new kid on the block of politics I thought the proposals I put forward were sensible, considered and justified (well, sort of!).

What I would like to say is a huge thank you to those Members of Parliament from the Liberal Democrats and Labour parties who took the time out to speak to me (and others) and listen to our views and the impact it will have on us as living, breathing, disabled human beings. But most of all, I would like to thank my own Member of Parliament , Claire Perry (Cons) who saw me at extremely short notice. I had met her once before, when she was canvassing during the general elections last Spring. It was the first time a candidate in my constituency had actually knocked on my door during the run up to an election, so I took time out to talk to Claire and listen to her views. I was impressed by what she said then, and I was impressed when I met her again earlier this week.

This time though, the tables were turned, as it was I who wanted to speak to Claire to put forward my concerns, as a member of her constituency rather than a lobbyist on behalf of Parkinson’s UK, about how I will be personally impacted by the proposed changes to the DLA, and she took the time to listen to what I had to say. We didn’t just discuss the DLA, we talked about other things as well such as the local secondary schools (a subject close to my heart as my elder daughter is soon to move on up to “big school”), my career in banking and also how the diagnosis of Parkinson’s affected me, and my life as a busy (and now full-time) Mom.

As for my brief sojourn in to the world of politics, who knows if I will do any more canvassing or lobbying in the future? What I will say with certainty though, is that whilst I will miss the world of Banking, what ever my retirement has in store for me I don’t think I’m going to be bored!