Meanwhile back at the ranch… CreativeCrip 8 Months #AfterESA

Regular readers of this blog and followers of the related @CreativeCrip Twitter account might recall in February of this year I rashly pulled myself out of ESA hell in favour of being self-employed. Being honest – I knew at the time that I still wasn’t ready to make such a move. Atos phoning me at home about another WCA was the catalyst. I literally could not face having to deal with them again and was so desperate that taking myself off the merry-go-round seemed like the only thing that would bring some relief.

It’s been touch-and-go ever since, largely because of the appalling lack of support from my old GPs & CMHT Psych Team. As I’ve said before, being a Native American merely Permanently Resident in the UK is not without problems. Every inquiry and appointment turns into an immigration interview – which is not only unnecessary it is quite inappropriate. One of the things that I constantly struggle with in trying to get help is that the professionals I am meant to be dealing with don’t leave their politics and prejudices at home. It’s much the same dealing with engineers from telephone companies, supermarket delivery drivers and neighbours. Everyone has really strong opinions on immigration, benefits and disability and there is no hesitation in imparting their wisdom to me no matter how malicious and ill-informed.

I’ve had to make even more changes in the aftermath of dropping my ESA claim.

  • My finances were in such a dire state that I had to borrow money to be able to move house and secure it by paying six months up front. There is no feeling of failure quite like crying to your mother at the ripe old age of 46 and having her cash in some of her pension to bail you out.
  • Instead of the accessible ground floor flat that cost £650/mo (downgraded from another ground floor flat that was £800/mo) in Cardiff, I am now living in an old split-level miner’s cottage in the Valleys that is nowhere near being disabled-friendly. It only costs £375/mo – great for someone with very low income. Accessible bungalows and ground floor flats come at a premium I simply cannot afford having already exhausted my redundancy on paying the mortgages of other people.
  • I need to find a new GP and essentially start all over again, hoping that I’ll get the support and referrals I need to manage my complex health needs. I haven’t found the courage to actually get myself out of the house to do this – and October marks three months living here.
  • When I moved house this past July I hadn’t seen my old GPs in over a year – our relationship was *that* adversarial. I just couldn’t cope with having to deal with them again knowing that, quite frankly, they really didn’t give a shit what happened to me as reflected in their attitude every step of the way.
  • The meds I need I haven’t had for some time now so of course my mood and manner are more down than slightly down (I’ve never been an “up” person and never will be). Having said that – there is a difference between Clinical Depression and just being in a foul mood. I am at least astute enough to recognise which is which in myself., but of course not having effective treatment for the Clinical Depression doesn’t help. I had been on 200gm of Sertraline a day but hypersomnia won out. The fact is that the Clinical Depression *is* really kicking my tail in every way, shape and form.
  • It seems that I may be an undiagnosed Aspie (and the results of Simon Baron Cohen’s online test support this along with some others) – but unfortunately before anything could be explored on that basis the old CMHT changed Psychiatrists, which they did every few months it seemed. I also missed a lot of appointments because I could not make them for physical or financial reasons or both. Making appointments three months in advance was never going to work. I also begged the CMHT to allow me to have phone conferences. This was laughed at…why I don’t know.
  • I have now been on a list to see a spinal surgeon for over two years. Every time I contacted the hospital they were annoyed and told me they would get back to me. Now that I’ve moved house I will have to get a new referral.
  • I am also overdue for knee surgery and this has severely impacted my mobility. Again I will have to get a new referral thanks to the house move.
  • I am angry about my situation and who I am because of it all the time… and no matter what I try it just doesn’t subside. As I’ve said before, all I’ve ever asked for is the help and support I need to get back to having a somewhat productive life. I’m not the only one in such a predicament but it astounds me still that politicians from all three major UK parties have strong opinions about disabled people and work, yet they seem to go out of their way to make things as difficult and inhumane as possible for us. Everything from Disability Living Allowance to Access To Work to Working Tax Credits is such a nightmare to navigate and especially for anyone who is completely alone.

Some people say that I have to “fake it until it’s real” and other similar Mindfulness pearls of wisdom along admonishments to “play the game” – both of which go down like a lead-weighted balloon. Being fake just does not compute. I am who I am and what I am is tired… just so very tired of the never-ending fighting for absolutely everything in every part of my life. And I am acutely aware that for every person who might *get* what I’m saying there will be a number of detractors. That’s fine… I can only ever tell the truth – my truth. It’s the same for all of us.

So here I am carrying on doing everything that I am told to do and hoping against all reasonable hope that things will get better.

 

 

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@CreativeCrip Suspension UPDATE – Funny olde world indeed

So… the third party who brought me into what is obviously a bogus situation and who couldn’t be arsed to reply to me on Friday now has this to say about my blog relating the details of my suspension:

“I dont even know why I am answering such silly nonsense.  THis just nonsense. The _____*whose ID I have temporarily forgotten) is someone I like talking to. @creativecrip is not. I blocked. “

O really?!!

That is QUITE the change from Friday where she happily tweeted my @CreativeCrip account, castigating him as an idiot and relating the woeful tale of him getting his followers to gang up on her (which others have seen, by the way thanks to searching my ID).

Funny that she’s tweeted a link to my blog calling me out – and has now protected her Twitter account!

Being a liar and a hypocrite aside, what can she possibly be afraid of?

@CreativeCrip Suspended from Twitter as of 28th Sept 2012

A few of my Twitter followers have noticed that my @CreativeCrip account has been suspended.

This was unexpected and completely without warning. I am of the opinion that this has occurred  because of malicious reporting on the part of adults who find it impossible to either block or ignore those whom they don’t like or disagree with or both. The circumstances are thus:

On 27th September someone I used to follow (but who still appeared in my timeline) said

“Depression doesn’t kill you, you do.”

I retweeted this along with my own comment that I found that assertion to be patronising and unhelpful. The following day he had a go at me – knowing that his rabid followers will immediately act upon any beef that he decides to have with other people. This is what he does – he gets his followers to go after people he doesn’t like or disagrees with.

Someone popped up and had a go at him. She doesn’t even follow me but decided to call him out (to me), saying that he and his followers had attacked her and accused her of being disablist for the observation that “disability is only one aspect of identity”. She had quite a bit to say to him in the main and kept copying me in.

Why I don’t know.

I was in middle of tweeting that she needed to keep me out of her sustained rants at him when my account was suspended.

It was *that* quick.

Mine was the only account suspended. Not hers. Not his.

Fast-forward several hours later. I tweeted the third party moaner from 1 of my 2 business accounts after the @CreativeCrip suspension & said “my @CreativeCrip acct is suspended thanks to the good Rev. In future pls keep me out of your chats w him. Thanks.” No response. She blocked me. I then looked through her timeline and saw that she was making an attempt to cosy up to him again, trying to get back in his good graces. Call me stupid, but there is no way in hell I would ever suck up to anyone who threw me under a bus and in so public and odious a way. Someone has suggested that this could be quite a clever little ploy by both parties – suffice it to say there is nothing that wouldn’t surprise me at this point especially considering who is involved. It’s not the first time something like this has happened on Twitter (or other social media platforms) and it sure won’t be the last.

It’s a funny olde world indeed.

So here I am fighting to get the suspension lifted. I have put too much hard work into @CreativeCrip to simply give up and possible start again: (1) that account has been mention in the Society Daily listings in The Guardian quite a bit and (2) my work through that account and The Broken of Britain also earned me a nod from Left Foot Forward in Nomination for most influential left-wing thinker: The disabled rights community

All are noted on my LinkedIn Profile here: uk.linkedin.com/in/iconicimagery

Needless to say – at the moment I feel like I have had enough of Social Media, and Twitter especially.

Musings: Lifestyle Change vs. Political Change and Disability

Just replied to a comment on my blog from a disability campaigner now owning that his focus is on “lifestyle change rather than political change” (I’m one of more than a few people with criticism of the BioPsychoSocial mantras being rammed down our throats).

This is my response:

“Again – lifestyle change for disabled people not born into privilege will not happen without political change.”

I still don’t want to live this life – the real world 2 months #afterESA

Today marks the point of no return for many disabled and ill people. An estimated 40,000 – 100,000 of those in our community who have worked will lose our Contributory Employment Support Allowance (ESA)  thanks to the new one year time limit railroaded through Parliament as part of the recent welfare reforms.

I’m one of them. Continue reading

ATOS Meltdown Continued: Dark Night of the Soul (#DWPPressOffice #workfare #ESA #disabilityUK #ukmh #mhuk #a4e)

 

 

 

Sometimes you just need someone to hold your hand and mentor you through things.

This is one of those times.

Continue reading

Media: “Technical Difficulties” with Tim Abbott – 24 Feb 2012


Resonance FM
Image via Wikipedia (CC “Fair Use”)

 

 

Today marked my first foray into radio.

I was a guest on Tim Abbott’s “Technical Difficulties” radio show on Resonance FM.

You can listen to the Podcast at http://podcasts.resonancefm.com/archives/8452

Continue reading

Scrounging Statistics and Soundbites No. 3: Millionaires & The Welfare State #WRB #benefits #ukpoli

 

“@: I have just published my blog ‘Benefits and the F word’ herehttp://paullewismoney.blogspot.com/2012/02/benefits-and-f-word.html

My thoughts:

What most people don’t realise is that in order to be “officially” recognised as Disabled you *must* be in receipt of DLA. Without it, it is impossible to get much needed help and support – even something as basic as a blue Badge, utility bill discount or motability car. The various programmes that exist are also run along the same tiers used by the DWP – ie, lower, middle & high rate for both care and mobility. If you don’t get higher rate of mobility or care, youre out of luck. This was my experience after becoming disabled a few years ago and using my savings, post-redundancy to fund my needs. Once that money was gone and I needed help, only then did I begin the arduous process of claiming benefits to try and keep going while I aimed for self-employment.

Were DLA not the determiner for access to services etc, I would say it is a moral issue for wealthy people like this man or David Cameron – and given the difficulties of those without such financial comfort in trying to meet the most basic of needs, the wealthy should bear the costs of their needs as long as they are financially able to do so.

Yet again – the system that is at the heart of the problem even more than any one person’s sense of “entitlement”.

http://tl.gd/foeimf ·

My New Years Traditions (2012) #NYEathome #virtualNYE #creativecrip

My late maternal grandmother was a firm believer in “getting everything correct” to set the “right tone” for the New Year. For as long as I can remember she stuck to her routine and never wavered. December 26 wasn’t about hitting the sales for more things that weren’t needed and which would inevitably be forgotten about once the novelty wore off. The day after Christmas was the start of our New Year’s preparations.

Grandmom Durham always said that if you bring in your New Year in an atmosphere of dirt, clutter and unfinished business, then you had a particularly rocky road ahead for the next year. Some people will scoff at this notion; but I’ve always found it to be true. Despite the vexations of modern life and disability, I do somehow manage to tune in to what I need to do even in periods of incredible stress when I end the current year and start a new one sticking to the family traditions.

PART I: Get your house in order!

1. The living space has to be clean. Rugs vacuumed, floors mopped and everything as neat and tidy as possible. Divide tasks into a reasonable pace over several days. Get the big jobs out of the way first.

2. Laundry and Dishes done no later than early evening New Year’s Eve.

3. The Year has to be brought in with a lot of joy and merriment. My Grandfather died on Christmas Day while I was in High School. That New Year’s was an especially loud and raucous one.

4. New Year’s Day is spent in as relaxed a manner as possible – avoid disagreements and sadness if at all possible.

5. In addition to doing housework, it’s also bad luck if a woman is the first to cross your doorstep on New Year’s Day. We do have certain foods that are meant to be eaten for good luck, but I find them unappetising (disgusting, actually).

PART II: The power of intention!

Following is another great addition to my New Year’s Traditions.

My dear friend Michelle H. turned me onto The Manifesting & Law of Attraction Group founded and run by Hemal Radia on Facebook in 2008 (http://www.facebook.com/ManifestingLOA). The timing was quite fortuitous as it was nearing Christmas. Hemal did a post where he talked about *Going into the New Year with momentum*. In essence, you are compelled to do a lot of self-reflection – never a bad thing at all and especially if you are in denial about taking control of your life and your ability to create the future that you want for yourself. I can honestly say that just about everything I wrote for 2009 came to fruition even down to the time periods specified. Quite profound for one who struggles with positive thinking (being clinically depressed doesn’t help), meditation and visualisation.

Below is the exercise Hemal had us follow. I’ve made a couple of slight tweaks but this is the general format.

MANIFESTING & LAW OF ATTRACTION

GOING INTO THE NEW YEAR (2012) WITH MOMENTUM

1 – Write at least 3 to 5 things that you have Appreciated about this year

2 – Write at least 3 to 5 things (or more) that you are Anticipating/Excited about next year

3 – This time next year, what will you be delighted and proud with? What will have happened? (You can do this for the end of Jan too, what will you be proud of by then?)

The choice of when to do this exercise is entirely up to you, but last year and this I am following the same process:

– work on it a few days before the new year

– add and refine up until 6th Jan at the latest “Three Kings*

– review it now and again as a sort of reminder/meditation at the start of the year although in my experience that isnt very necessary – just getting it down with intent and being purposeful is enough

The idea is that you give yourself more than enough time to reflect and work with energy of the New Year as it comes in. I start working on this on the 28th of December, which gives me the opportunity to work with the departing energies of the current year in looking back for item 1. I then approach items 2 and 3 over the next few days leading up to New Year’s Eve. I find that list details come to me when I’m not actually in front of my computer. Don’t be surprised if you come up with an extensive list; but the one thing I would advise is be as specific as possible. If you want to achieve certain things by a certain date then by all means write it down. It worked for me. I wanted certain things to happen by the end of April 2009 and they all did (though the process was very painful).

I wish you all that you want for yourselves and much more.

Bright Blessings and Happy New Year!

#CreativeCrip #cripmas #xmasathome 2011

Two years ago today I attempted #suicide.

Making my life count through #disability & #mentalhealth Campaigning but no politics today.

I’m no victim but I am suffering.

Fact.

No shame in saying so either.

Still fighting a good & just fight. #disability #mentalillness #wrb

Nadolig Llawen / Merry Christmas from me with love ❤ #xmasathome #disabilityUK #ukmh #mhuk #cripmas #cripmaslunch