No Place For Disabled People

I see no reason to hide the fact that I suffer from depression. It is nothing to be ashamed of, and those feelings have (at least sometimes) been the catalyst for what I think is some of my best work.

I used to give myself a hard time over it, because I’ve been brought up to believe (and I genuinely do believe) that there is ‘always someone worse off than you’. I felt, and still feel, an intense guilt when the depression hits, because I know that I am so very lucky compared to some.

My worst enemy is myself, and I realise that is down to me to solve that problem. There’s a lot to be said for making friends with yourself, and accepting your own limitations.

Have I accepted my disability? I thought I had, but this government coming to power and attacking our rights, dignity, and self-esteem has pushed me backwards in that process.

Finding my strengths and playing to them, rather than looking at the things I can’t do has always been a route through the total despair I’ve felt at times. I won’t pretend that the things I can’t do aren’t a problem for me. They are.

Knowing I’ll never be a mother is something that completely rips me to pieces. I can’t even describe that level of pain, especially when there are reminders everywhere, everyday. I’m better than I was with that particular issue – but I’ve got a long way to go.

I worked for a while (at the MOD) and that was followed by voluntary work at the local Citizen’s Advice Bureau. I was physically and mentally exhausted by the end of everyday, and I know that since my various conditions have deteriorated further, a job (in the traditional sense of the word, at least) is not an option.

Cerebral Palsy is no picnic. I cannot walk or stand unaided and that (coupled with Endometriosis, Polycystic Ovary Syndrome, depression and a few other things thrown in) means that my body (and my mind at times) have stopped me living a ‘normal’ life, like I badly want to do.

It seems that other people take so much for granted, and that is something that often gets forgotten. Hug your kids and remind yourself that not everyone is so lucky. Try and enjoy your job even though it sucks having to get up early on Monday mornings, and your boss is a prick!

I miss my job. I miss that feeling of earning my own money, and knowing I was ‘contributing.’

You see, in this government’s eyes, I’m not. I’m useless to society and apparently I lie in bed all day, getting something for nothing, while hard-working, striving, achieving, worthy real people pay for me to live.

I only lie in bed all day when I’m in too much pain to move, or I haven’t slept a wink due to anxiety – anxiety which this government has added to.

I’m terrified of ATOS and the ‘Work Compitability Assessment which I know I have been set up to fail. Sometimes (even if it’s only momentarily) I feel like I would rather be dead than judged, and stripped of what independence I am able to have.

At the moment I can help my husband pay the bills, get taxis to the doctors and go to visit friends when I feel well enough. It helps me feel ‘normal’ – as much as I can.

If my Disability Living Allowance is stripped I will be entirely reliant on my husband (and his Pension Credit) for everything. The fact that I have him makes me luckier than a lot of people in my situation, so once again I’m feeling guilty for writing this. It seems so ‘woe is me’ and wrong for me to feel that way.

The independence I am able to have and keep is everything to me though. This government has taken my rights, my self-respect and now they want to take the independence I have worked for too. How is that fair? How is it fair that so many sick and disabled people have died. (or been plunged into poverty and destitution) after being fit for work – either through taking their own life or as a result of deterioration in their conditions due to stress?

I must hold on to my strength. I must remember that I am Helen – and not a useless, worthless ‘scrounger’.

I am a person too. I’m a wife, daughter, sister, campaigner and writer. I am worth more than to be bullied, scape-goated and victimised, simply because I am disabled. I did not choose to live like this, and I would give anything in the world to change it, but I have achieved something (despite what the Coalition wants society to believe).

I am me. I have built myself up, and I will not let them and their vicious, vindictive lies take me down. They will not win!

My Words (Poem 2011)

Today my words are empty,
They stand like used milk bottles,
Vacant and neglected,
Fragile, unprotected.

They once shimmered in sunlight,
Waiting on the doorstep
Until I ask them in,
Now they're left for another day,
Because no one lives within.

Today the skies have darkened,
A heavy leaden grey,
My words
That once were lively,
Have softly slipped away.

Tomorrow a gust of wind may blow,
I might hear a shattering sound,
Those perfect shimmering milk bottles
Lie in pieces
On the ground. 

(Image: Google)

Happy -(poem 2012)

I feel so happy today
For now there is no pain,
I am floating high above cloud nine
And dancing in the rain.

I feel so happy today
There is sunlight on my face,
All the agony that was there before
Has left without a trace.

I feel so happy today
You won’t take that away,
I’ll be standing for as long as I can
And begging it to stay.

I feel so happy today
A perfect peace descends,
I’ll grasp it for as long as I can
And hold it ‘til the end.

I feel so happy today
I will again tomorrow,
And for all the days after that
I’m done with pain and sorrow.

I feel so happy today
Here’s to defying gravity,
The world can take another shot
It will never destroy me.

Image: Google
#helenswriting

Bedroom Tax: DHP or not DHP?

 I have been biding my time before writing the Coalition’s ‘Spare Room Subsidy’, or as we opponents call it, the ‘Bedroom Tax’. The rules were changing so quickly that any article I put together would probably be out of date before it was published.

However with several more national protests due to take place on the 24th August ( http://tmso.org.uk/)  I felt now was the right time.

The government denies that it is a ‘bedroom tax,’ but the way I see it is this.

 If a Housing Benefit Claimant has to lose fourteen percent of their benefit for one spare bedroom and a further twenty five percent for each spare bedroom after that, then what is it if not a ‘Bedroom Tax?’

Whilst no one is denying that there are families that are in accommodation that is too small for their needs, the reality of what the ‘bedroom tax’ will do (and has done already) cannot be ignored.

 People who cannot afford the extra charges imposed on their bedrooms are being forced to downsize.

They can of course apply to their local Council for a Discretionary Housing Payment (but that only amounts to around £2.40- per household- and is temporary). As things stand the claimant needs to reapply for Discretionary Housing Payment every thirteen weeks. This will only add to the stress of the situation.

The money itself comes from the national government and has not been ring fenced. The government can use it somewhere else if necessary. can use it for something else if necessary.  

Also, the fact is it will be nowhere near enough to cover all those that need it and I can’t help but feel it has been severely under publicised.

The governments ‘pay up or move’ idea will actually cause more problems than it solves. To begin with there is a national shortage of social housing since it was sold off in the 1980’s as a result of Thatcher’s ‘Right to Buy’ incentive. The social housing stock has simply not been replaced since.

According to the National Housing Federation, there are 70,000 one bedroom properties available, and 188,000 properties. I have been told that there are at least two million people who will need to be rehomed. 

This leads to the obvious question – where will people go? One and two bedroom homes in the social housing sector are few and far between, and it is undeniable that there will be an upsurge in homelessness as a result. Source:  http://www.crisis.org.uk/pages/why-we-need-your-help.html

 In fact, even before the bedroom tax began on April 1^st this year, there was a rise in people and families seeking accommodation in hostels, and local councils were placing people in Bed and Breakfast as the austerity already began to bite. This is no way for a family to live, but it’s better than living on the street which many people fear will be the only option for some.

The government is of the opinion that most people will choose to stay in their homes and pay the extra costs. Was this the plan all along? Is it just a money making exercise? In my opinion, yes!  We are dealing with Tory ideology after all, and once again it is the poorest and most vulnerable in society paying the price.

You may already be aware of the various exemptions that the government have (begrudgingly) agreed to after intense pressure from campaigners and charities.

Families with disabled children are now (apparently) exempt from the tax. However,  even since the Burnip case court ruling, this has not yet been implemented. It is a step in the right direction, but disabled adults are not yet exempt. It is a fact that two thirds of those affected by ‘bedroom tax’ are disabled.  

http://www.theguardian.com/society/2013/jul/16/bedroom-tax-burden-disabled-people

Those with learning difficulties and mental illness are not exempt either. Can you imagine how being forced out of a home you feel safe and secure in would be for someone who has these issues? It is unsettling and stressful enough for those that are not dealing with illness and disability, never mind for those that are!

Benefit claimants are not just numbers on a page. We deserve security, safety, a decent life, and respect. 

This government are stripping the poorest and most vulnerable in society of even that.

Bedroom Tax and all the pain and suffering it is causing (and will go on to cause), should stop now.

Forcing people out of their homes is not the answer. We need more social housing and an end to the austerity measures.

This crisis (along with many others) could be ended if tax loopholes were closed and the money was reclaimed from those corporations and rich individuals that have not paid their share.

We need to stand together and fight against this policy and many others that are a severely detrimental and heartbreaking affect on people’s lives.

Source: for Discretionary Housing Payment information:

https://attachment.fbsbx.com/messaging_attachment.php?aid=003b7462cc47b354ec040a1e8b

Sunshine and Drizzle Cake - (Campaign Edit).

I was in pain when I woke up. My hips were throbbing and the Endometriosis ache was surging through my sides. Shifting on my back, I wondered if it was too late to cancel our plans? I couldn't guarantee I wasn't going to be sick again.

My husband peered around the bedroom door, "How are you feeling? If you want to cancel we'd better do it soon..." 

Bright, beautiful sunshine was streaming through the window, and knowing how rare it has been this summer, I responded with, 'No, I'm OK'.

I wanted to be up, out and taking photos of a church we hadn't been to yet. It might seem a strange hobby (especially for an Atheist) but I love taking photos of churches almost as much as I love taking photos of derelict buildings! 

Besides, I knew I needed a break from things. Campaigning can take over your life if you let it, and I’d recently began to realise that that is exactly what was happening to me.

Another day of dealing with the problems and pain this government was causing, and I’d end up in tears. Sometimes the very thought of it made (and makes) me feel tired.

It was my husband who made me stop and think. He said, ‘you are entitled to a life you know. You’ve spent every day fighting against this government, and whether you realise it or not, they’ve already taken part of your life away – because it’s all about the fight now’.  

Something jolted in me, and I realised he was right. Since we started ‘Radical Spirit Radio’ on top of all the other campaigning as well, I had let it take over. I was at the point where I felt guilty if I took the day off. I think maybe, I’m still there now, but after that conversation, I’m trying to be better.

We have a battle on our hands and it’s a battle that we shouldn’t have to fight. We deal with illness, disability, pain and exhaustion one way or another. If this government had their way, they would make us feel like we don’t deserve a life – but we do. Every single one of us!

We all need a rest sometimes – otherwise we’ll burn out. I want better than that for all of us, and I decided to put myself first.

Churches and the graveyards that surround them are special to me. It's the architecture, the history, but most importantly it's the peace and the stillness. There is a calming effect whether you believe in 'anything else' or not. 

Churches rarely change so the feeling of timelessness is another thing that attracts me. Imagine all those people for all those generations, that have pushed open that heavy door...

I didn't bother with breakfast - I rarely do. The 'Endo' makes me feel to sick in the mornings. Instead I swallowed a painkiller and sipped a cup of tea. Tea is my 'starter fuel' and feeling sick or not, I find I don't function well without it!

Marian, (my husband's sister) arrived and gave me a hug. We watched our husband's load my wheelchair into the back of their new car. "I hope it fits" she said, smiling at me, "Me too" I replied as another pain shot through my hip and down to my toes.

It did.

Mells church, (the church of St Andrew) is especially pretty.  I loved the porch with its window, that you can see above the outer door, and the interior is especially ornate, so much detail and unique memorials - one if which was designed by Edwin Lutyens.

The graveyard has several notable burials, perhaps the most notable is Siegfried Sassoon (1886 - 1967) -the war poet and soldier.

With my wheelchair parked beside his grave (the church yard is too bumpy to push the wheelchair over and I definitely was not in a fit state to walk even a little way on my crutches), I wondered about all the things he must have seen. That has to change a person. 

The writer in me wondered about his writing process, and if he had a desk! I don't have one - usually it's the dining room table or my notebook comes to bed with me...  

I shivered a bit as the pain ran through me again...but nothing compared to what people involved in war must experience. I felt lucky.

Mells is quite close to us. It's a beautiful village with old cottages, a post office, pub and a few tea rooms. 

The place is riddled with history, and I believe the nursery rhyme 'Little Jack Horner' has its origins there. The Horner's being local wealthy landowners, and responsible for bringing many 'arty types' to the village.

The sunshine made my pain seem less important, and as I sat on the wooden outdoor chairs of 'The Walled Garden' with the warmth on my back, I knew I'd done the right thing in forcing myself to go out. It is a case of forcing myself sometimes - what with the pain, nausea and depression, it can be easy to just stay at home with my husband and let the days slip by.

The lemon drizzle cake sweet on my tongue, the sunshine, and my husband's hand in mine made me so glad this one hadn't.

A Pigeon Saw Me Naked... (Mini Facebook Status Update)

6.00am


About an hour ago, a pigeon saw me naked. 

It was perched on a rooftop that I can see from the landing window.

I've just walked past again, and it's still there! 

I think maybe it's traumatised.

 ...I would be! 


 ...And now you are too!  


My work here is done. 


Have a lovely day! 

(Image: Google)

In the Event of My Death - (Facebook Status).

Just listening to a programme on Radio 4 about the protection of facebook and social network 'stuff' and what happens in the event of the account holders death.

OK, here's my plan:

In the event of my death, my facebook account will hopefully be kept active. Hubby and family have my 'login details'.

Please keep posting stuff - you know the things I rant about on a regular basis, keep doing it for me! :-P

Leave pictures and messages, just as I do on the Facebook page of a friend that died a few years ago.
  

This is morbid I know, but it has to be said. You know the things I am passionate about, and you know how much disability rights and campaigning means to me. You know how vital it is that the words, thoughts and feelings of disabled people are heard - and how important it is that we be understood better. KEEP DOING IT!

In the event of my funeral:

NO BLACK - just bright colours.

No hymns - or God related passages. I want poems, funny stuff and memories of me.

Funeral Music:

'The Love Inside' - Barbra Streisand
Carpenters songs - (whichever ones. I'll be dead, so not fussed)
'Walking on Sunshine' - Katrina and the waves
'Defying Gravity' - Idina Menzel (last)

(as there will be STRICTLY NO HYMNS - there will be plenty of time for good music).

I'd like pink roses please.

- and lastly, somebody has MY full permission to come to my funeral dressed as 'The Grim Reaper!' (If you get complaints from some of the more 'sensitive' types, tell them I said you could - and it's my funeral, so I make the rules)!

Sincerely,

H xx