you dont see me...

You look, but you don't see.

You look at my photos and my tweets from last night and you think I must be a fraud.
You don't see the anxiety in those things. You don't see the stress.
You don't see the stewards who escorted us around the arena, who looked after us
(so we avoided the crowd)

You look at my life but you dont see.
You look at where I was last night as a bad thing,
but you dont see the achievement.
The media doesn't allow you to, to see that people can do amazing things and still be disabled.
you don't see my husband standing right next to me, keeping me safe.
You don't see the area where we were, or the emails of reassurance that there would be somewhere to sit away from the noise, and the questions of how many people there would be.

You look and my life and you judge.
You don't see, because I wont let you see how I am today.
The sacrifice I make to get there, to be there.

You look and you wonder how I managed that.
I can tell you, if your interested in seeing how things are for me.

Last night was special. A one off, a once in a lifetime. My husband and I had got seated tickets to see Nickelback, we usually arrive after everyone else, and just before people leave. 2 weeks ago we won a VIP upgrade to go and stand next to the stage. After some emails of reassurance we took them up on their offer. We are so  glad we did, because we now have signed Nickelback Tshirts and memories of an amazing night that will stay with us forever. The staff were mainly amazing and really supported me and enabled me to attend within my limits. We were escorted into the VIP  entrance, and afterwards we spent some time locally to wait for the crowds to go so we could get home safely.

Disabled people can and do go to concerts. This isn't something I should feel I have to blog about, but this climate of fear and uncertainly and judgement means I feel the need to justify myself. It might be a sad fact, but it is true. Now I must go, my bed is calling me, time to recover.

overheard in costa (language matters)

non-disabled "professional": the 21st December, yes I'm off then, booked that week off work, Iv got other things to do that week, got assignments to write and family to see over christmas. busy, busy.

disabled person: So what about wednesday? (meaning this meeting, interaction)

Non-disabled "professional": O, Im sure someone else from the team can come and see you instead.

In order to show whats wrong with this conversation I overheard in costa this morning I need to write it out again in a way that would have been much better.

Non-disabled "professional": Are you doing anything over christmas? It's a busy time of the year isn't it? 

disabled person: no, not really, not got much planned.

non-disabled "professional": O, thats a shame, do you want to do anything? (thinking of things that can be arranged, it appeared to be a support worker appointment) Unfortunately I'm not going to be able to see you on these dates,so you want to see someone else that week or would you rather wait? I can give you the office number to ring if you need someone.

I have only given a snippet here, but I heard more than this so know a bit of the context. the person was being supported in some way and it was a semi formal chat about their support needs and weekly activities etc. It felt really dis empowering to the disabled person, because the non-disabled person had reduced them to just being "work" and not human. It could be argued that those boundaries were in place and that the relationship was already clear and established, but due to the location (costa coffee) of the meeting it immediately blurs those boundaries of social and formal. 

mmm.. 

Feeling foreign..

I remember doing a survey a few months ago and finding it quite novel that I was considered a minority in America as I was "of Hispanic origin."
Recently I have been reading some critical race theory from an american perspective and once again i am considered a "minority".
I fear that this feeling will expand and become ever more prominent in my life as Britain makes plans to leave the EU, let me explain why.
Despite my surname appearing british, my maiden name is distinctly Spanish, even having a double barrel name. I have a complicated relationship with the fact i am half Spanish, made even more complex by britex. My Dad came over from Spain in the 70s to find work, found love along the way and settled down with my Mum and had me and my sister along the way.
Since the divorce i have very little to do with either my dad or my spanish heritage. I was quite glad to have the opportunity to change my name when i got married.
However, i find myself in a strange place. Despite living in the UK all my life it seems that by some in this country I would still be considered a foreigner because of my "first generation" status. It also seems that the numbers of people who consider this is growing, even to include the government in recent days.
When i read the headlines, foreign academics banned from discussion s about brexit, I find myself wondering if that would include me, after all how foreign do you have to be?
All of a sudden, i feel like a foreigner in my own country, which is a strange place to be. I seem to be feeling more "Spanish" whatever that might be, and that feeling is very weird. It started when the referendum was announced, and along with it my change of identity. I have never really considered myself "British" but "European" As it fit me better. All of a sudden I started to question this and wonder about who i am and where i "belong ".

At the moment I'm happy to dismiss those thoughts as my paranoid anxiety, but the more i read and the further along we go along this track i wonder if those fears will become reality.

Numbers

I walked out of the small court room with my husband clutching two pieces of paper that I had spent the last five months fighting for. On it contained the truth, as the law sees it. The law doesn't care for targets or budgets all it cares for is the truth and the application of that truth. 

For the first time during the process of claiming PIP my medical evidence, submitted right at the start of the process was considered. The DWP rejected his evidence because he wasn't part of the NHS, an ironic statement considering that ATOS aren't either. Not only that for the first time, my own testimony was also considered, both given on my original form and during the tribunal.

The three tribunal members were ruthless in their questioning, but compassionate with it. Their aim was to ensure that the correct award level was determined in my case, and in order to do that, they needed to ask me some difficult questions about my life and the limitations I have. They allowed me to take my time and tried their best to put me at ease (not really possible in that situation). I managed to get through it with only one break (something that I paid for later). 

For the first time in the PIP process I was considered as a human, but in doing so, had to reduce me into descriptors and points, representing the way PIP is awarded. 

My life is now worth 11 points. It means I am entitled to PIP at the standard rate of daily living. I am not entitled to PIP moving around, but I still got 4 points. Considering the DWP considered my life to be worth zero points I am grateful for the 15 points the tribunal think my life is now worth.

I am now trying to process my experiences in the last few months. I don't think  I will ever feel at peace for what happened. The DWP and ATOS left me without any income for the last five months, because all m other benefits are linked to DLA/PIP. The effects of this process on my health has far reaching consequences. I haven't been able to access treatment for my condition during this time, meaning a deterioration in my health, and many more months of therapy added to my original "prescription". 

I can now at least try to move on, at least for the next one and a half years before it starts again. I have a three year award but it will be reviewed in 2 years. Its not much time, in terms of therapy it may mean I get back to the point that I was before I was subject to applying for PIP, a level most people wouldn't recognise as a good one, but that is relative. 

I now become one person amongst many who have successfully appealed against PIP. The appeal rate is so high that I hope that more people will start to take notice of whats going on, and how wrong the whole system is. My story is one amongst many, it is not the exception, it is the norm. More and more people have to include an appeal in their PIP application process. It is an unnecessary, pointless and more importantly a costly process. The system needs to change and quickly. 

HELP

I am writing this blog because I am angry and upset. I will not lower myself to name names publicly, that is best done in private. In short I have been screwed over.

I went to the CAB for benefits advice, but because of their complete lack of funding I decided to go elsewhere for help. I found somewhere that represents people at appeal and had a proven track record at winning appeals and a website full of useful and relevant information. There was no indication of anything wrong at all. I am sure they are who they say they are, theres nothing wrong with fraud or anything like that. However, there is a dark side to them, a very dark side.

Having sucessfully requested their services they sent me a letter, which included a contract which I had to sign to state that I would give them 200 pounds from the appeal winnings. Unfortunately I didn't keep a copy of this one. They also demanded 30 pounds up front for admin costs. Remember, I haven't had an income since april, thats a lot of money.

The appeal pack came a week or so ago and the date for the appeal shortly afterwards. I immediately informed them as it was four weeks notice of the appeal date. This is the email correspondance that ensued:

 It might look a bit bitty but then I am only screengrabbing the conversation. I can provide further proof of this if anyone needs it.I responded to the email then:

The response i got from this was shocking and just plain horrible:

My response to this was pretty level and appropiate:

So today on facebook I notice that they post a status saying that it was lovely that one of their clients, on winning their appeal had "given" them 200 pounds. I merely pointed out that this was a contractual obligation and this was the response I got ( as it seems I can no longer see their facebook posts I assume I have been blocked and I am still waiting a response from them by email regarding all of this) This is the facebook notification of their post:

and this too:

So here is me, with little over 3 weeks to my appeal now having to try and find someone else to represent me, because even if they still will, I dont trust them anymore and feel sick about this whole thing.

The CAB are going to try and do their best, but they can't promise anything with such short notice. I feel like crying, giving up, but I need to remind myself that I can do this, even if I am forced to on my own. I just hope I don't have to.

Please, if you are going to engage with advice services be very careful because they can be good and bad ones out there. if you are worried feel free to contact me on twitter @allbigideas and I can help you.

dwp logic

what does the dwp do when they don't like what you've written?
photocopy it so it says something else of course.
yup, where I once wrote that I can not safely do a task on the pip 3 form was photocopied onto their system to read that I can safely do it. Other vital words have been missed out too.
so, couple of questions here.
how did the health professional read my form if my form wasn't on the system correctly?
how can I trust a company that cant even photocopy a form correctly?

the end of another month.

I haven't posted about PIP recently, mainly because theres been very little to report and I have been coping by not coping, head down and ignoring it.

It seems apt to get my appeal pack today, the end of another month. It was the 1st April I put my mandatory reconsideration in, and it was the 1st July that the appeals service received my notice of appeal. Its been another month.

I am hopeful for the appeal. THats about all I can say.

Still with no income, still just living day to day. We have been very lucky to live close to a Netto, who recently announced they were closing. The half price sale has left us with enough tins and packets of food to survive for a couple of months more. For example, tins of potatoes that were already only 30p to start with we got for 15p.