Ableism in the teacher training curriculum: Some stuff I need to say

In March of this year I had a PIP medical. See here for the impact of that: https://www.theguardian.com/commentisfree/2016/may/12/benefits-assessment-ptsd-benefit

What I haven't revealed until now is the other half of that story. I was on a teaching course at the time. Studying to do a PGCE. As a direct result of  the PIP medical's effects on my mental health I was forced to quit studying because of the concerns my placement had on my ability to teach their students (their words).

I have not shared this because I have been unable to. I have had to deal with the PIP process and appeal, which only ended in September, and then had to focus on starting my new course an MA in education. It is through this new course and my first assignment that I am now able to start to process what happened back in march.

I was studying a PGCE in further education teacher training, for disabled students. It is my firm belief that there needs to be more disabled teachers to teach disabled students, and this was my goal. I was only able to do this part time, but I was hoping to make a difference. But I couldn't even get through the PGCE year. Throughout my placement, in a special education college, I was forced to pass as a non disabled person. I was told not to reveal anything to the students, but seen other teachers doing just that about their personal life. What they actually meant was, don't tell them your disabled, don't reveal you are the same as them, as it was seen as a weakness and not a strength. The teachers I was working with had a deficit model of disability and impairment and couldn't see beyond that.

Ironically, one of them revealed my child to the group, which was seen as perfectly acceptable, but something I had chosen not to reveal in chosing the boundaries to operate in myself. I had to sit there (after being told off for discussing my history with the students) and listen to some really vile stuff about being disabled without being able to challenge it.

I am a politcally disabled person. It is part of who I am, and I am part of an oppressed minority in society. My impairment doesn't disable me, but the barriers, attitudes and access in society does.
There will be more to follow when I have written my first assingment about ableism in the teacher training community.
I want to leave you with this poem.

I am disabled by you.

I am disabled by your rules and your barriers.

I am disabled by your systems that I just don't understand and don't fit into.

I am disabled by your stairs and your signs written in bright white

I am disabled by your education system that says that i have to do things in a certain way in order to get a certain outcome.

I am disabled by your assumptions about my ability

I am disabled by your assumptions about my disability

I am disabled by your sticky labels and your self fulfilling prophecies

I am disabled by your label of disabled (and not person)

I am disabled by your stereotypes

I am disabled by your attitude and your inability to listen to me and what I need to succeed.

I am disabled by your trains and buses that are just too busy for me to get on

I am disabled by your inability to see me as a disabled person.

I am disabled by your control over my life

I am disabled by your inability to treat my impairment as real and valid

I am disabled by your failure to take responsibility to accommodate my needs

I am disabled by your words of hate and intolerance

I am disabled by your ignorance

yes

I might be a disabled person

but it is you who are disabling me

CHANGE

I am enabled by your barrier breaking

I am enabled by your equalising rules

I am enabled by empowerment

I am enabled by lifts and ramps and other ways around

I am enabled by alternative assessments and using computers to write with

I am enabled by your questions about my ability

I am enabled by your questions about my disability

I am enabled by your ability to look beyond my labels

I am enabled by your holistic approach to my life

I am enabled by your ability to see me as ME

I am enabled by your attitude and your understanding

I am enabled by single seats and quieter transport

I am enabled by your ability to see me as a disabled person

I am enabled by your willingness to simply walk alongside me

I am enabled by your accommodations and adaptations

I am enabled by your words of support and tolerance

I am enabled by you listening to me

Yes

I might be a disabled person

but it is you who makes the difference.

I am disabled by THEM

I am disabled by their ableism in their curriculum

I am disabled by their concept that a teacher can not be disabled and teach disabled students

I am disabled by their curriculum, that puts ME as other, the one to be taught to

I am disabled by their perfect placements that just dont want a disabled teacher

I am disabled by being not quite

I am disabled because I am not in a wheelchair, and thats what they expect

I am disabled by their right and wrong way to do things

I am disabled by being able to pass as normal in their world

I am disabled by their deficit definition of disability

I am disabled by who they say I should be and who I should not be

I am disabled by their personally imposed boundaries

I am disabled by their non critical approach to teaching me how to teach

I am disabled by their attendance requirements and assessment guidelines

I am disabled by their forced suspension making me feel like a failure

And I need to do something about that

So change?

What can I do?

I am doing it

Here, now, this minute

Writing and speaking about it

The personal becomes political

And its not just me who is disabled any more

Its YOU.

“To tell the truth is to become beautiful, to begin to love yourself, value yourself. And that’s political, in its most profound way.”  —June Jorda

Being prevented from studying by reason of impairment

LI started a Masters course in September, a mere 2 weeks after my successful appeal of PIP. As you can imagine im not really fully functional and using this course as a recovery tool.
I would also like to say what an amazingly accessible course it is. Public transport is door to door and i have 3 hours of contact time a week, the Rest is self directed study which gives me unlimited flexibility to chose how and when i study.
That being said i still need extra adjustments because of the effects of my impairment and the incompatible nature of university life.
With that in mind i applied for disabled student allowance. I have been on this since 2007, again a reflection of how long it took me to get through undergraduate level study (i graduated in 2013).
Thanks to the changes at student finance to disabled students allowance this last year they will no longer fund a new needs assessment and state that my one from 2008 still stands and i should use the equipment from then.
Back then i was doing a full time undergraduate degree in photography, complete with mac and Photoshop recommended. I think that needs assessment in 2008 swapped my needs over onto a new course, the one i graduated from (education and disability studies). It was (in the main) full time. I was single at the time and living a big distance from uni. I think i got a computer running xp and associated assistive software. I think i upgraded sometime in 2011 to my current computer, but couldnt get the software to work (and failed to get it through dsa i think)
Fast forward to 2016. I am married now and have a child, and this is relevant. Im living closer to uni now and we have a car.
Because of my child and intersected with my impairment i can study for 2 hours a day. It is vital that i use this time as best i can.
Dsa have said i can continue to use my 2007 Dictaphone and the computers i no longer have, and the software that isn't compatible. Not only that i have 34 hours of mentor support. I need 52 weeks because that's the length of my course and over summer when theres no classes is when im going to really need it.
They have said that i can have a "review" of my needs, but that's not the same. As the social model of disability theory goes, i am differently disabled depending on the environment i access. This environment is completely different to under graduate level.
For the last two years i had the same battle for a dsa suitable for my needs. Unfortunately, due to the lack of support I had to quit that course before I could qualify and finish. But that was due to bot being allowed to be ill as a result of my PIP experience, so i think that was a bigger factor.
I wonder what this review will consist of and if when they send the report to dsa, they will actually take it into consideration?
Time will tell.

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.

multiple identities

Since April 11th I have been waiting, wishing hoping to reclaim my "disabled" identity back from the government who denied me it. Stuck in a parallel world, stuck in the gap of being before, not being currently but hoping to be again. Certainly in the governments eyes, because it means power, status and most importantly an income.

Still living that disabled identity everyday, being consciously aware of the barriers that grow bigger every day as a result of the denial of my identity, status, power and money. Not having the energy to fight them, even though I know if I don't fight now, the fight to reclaim will be harder once I have won. Which I will.

But I have to keep reminding myself of that fact. Looking over my various pieces of medical evidence which prove my disabled identity, but only the medical shadow, the mere footprint of its existence of its occupation of my whole self, not painting the whole picture. Not that the government want the whole picture, they are only interested in the deficit, the can't do, the poor little disabled person identity.

But the whole can't function without the shadow. The darkness and the light need to co-exist together. I need to have the shadow, the footprint to exist, even if just to fight against. To compete against. In order to be a Disabled Person, I must first be considered disabled.

Yesterday, as I simply entered a room I could feel the accelerated thud of my disabled academic identity flooding my body, and the thrill of this feeling invigorated me. I became alive again, or at least another identity reawakened within me and started thinking, making connections and engaging with rich and emotional discourse that touched my very soul and made it dance.

As I stepped out of the room at the end of the day and back on the train with my husband beside me, the energy disappeared from my body, the disabled identity reappearing as I lay shrivelled in my seat for the return home.

Today, as I sat in another room I became once again the disabled student. Discussing my barriers in context to study once again reminded me of the journey I had been on with that identity and how it had moudled and changed my very essence, giving rise to other, powerful identities of Disabled Person and Disabled Activist. I became excited to re visit and work with that identity in the coming months.

Tonight, as my daughter turned towards me, closed her eyes and wriggled her tired body as closely as she could into mine I became reminded of one of the most powerful and emotional identities I have, that of being a Mother.

Theorising normalcy and the mundane book review

I went to a conference yesterday where a book was launched which includes a chapter that I wrote. Its based on my undergraduate research project, and as is typical when I had a mic in front of me I completely forgot what I was going to say and said nothing in particular. So I thought I would try again using my blog, as I hope you'll agree if you read my book, my words are more eloquent written down.

Who is a normal student?

That was my starting point. I used a process of discourse analysis (which I like to describe as using text as a passive research participant) to discover how the universities use the language of their prospectuses to define their "perfect" or "normal" student. I found some amazing things about prospectuses which you can read more of in the chapter, but my favourite one was how all the institutions used the word you.

You is such a tiny word but yet was ascribed so much power in constructing the normal student. It was used as past, present and future and as plural and singular. You was used when it might have been better to say you all. It was used to homogenise groups and exclude others. You was the device that the institutions used to communicate directly and provocatively with their target audience.

I contextualise my findings with wider discourse that feeds into the higher education system such as the marketisation agenda and concepts such as a gatekeeper and create my own idea around spheres of normal.

I have used pictures to help illustrate my findings, because I found it helpful to see them and not just read about them, so I hope it helps clarify things.

I had hoped when i did my research originally that it would act as a springboard and a catalyst for others to research, mainly becuase its quite a small scale research project. Its really exciting because through this book I can envisage this happening even more so.

So, this is my chapter of this awesome book. Feel free to contact me on twitter @allbigideas for any questions you have and you can buy the book and the rest of the chapters from here: http://storefront.chester.ac.uk/index.php?main_page=product_info&cPath=12_14&products_id=626

the wheels on the bus

There is a case going to the supreme court this week about whether wheelchair users should have absolute priority over other passengers on buses.
http://www.theguardian.com/commentisfree/2015/jul/09/wheelchair-pram-bus-space

I have to be clear, I hate travelling on the bus with my pram, I prefer the tram. On the rare (now impossible) days that I used to take my daughter out alone on the bus there were plenty of times I had to wait for the 3rd or sometimes 4th bus to get on. This was usually for something important like a doctors appointment for her (I rarely travelled on the bus on my own with her unless essential). I left plenty of time and made sure to accomodate the wait time into my trip.

Anyway, that aside that is not the main problem I have with this case. It places "disabled people" at odds with "parents and children". I am both a disabled person and a parent. The fact that the bus can get my pram on actually enables me to travel, just in the same way as a wheelchair user experiences. I do not, when I am on my own with my daughter have the capacity to fold down the pushchair. It is not a simple case of inconvience for me, it is a case of being impossible when I am on my own.

There are other areas where there is an unfortunate clash of needs, namely in the toilet areas, where disabled peoples needs are usually met in the same space as parent and childrens needs are. There is no particular priority given to either group, it is simply a shared space and we take it in turns to use its shared facilities. its not ideal, but it works. I personally think its the same with all areas. We share our spaces with others in all aspects of life. Why is it so hard to share the bus space with others who may need it equally?

Yes, a wheelchair user can only use one space on the bus, so can the disabled mother with the pram. I am concerned that in the future I could get on a bus at one end of town and be asked to leave by the other end of town, forcing me to have to go back to the first stop, because it is the only stop I can get on to ensure I can get on with the pram, just because a wheelchair user gets on after me. I too may have had to wait 3 or 4 buses to get on too. I also have places to go of importance. It isn't easy for any of us with wheels, we should work together.

I want to leave you with a story from last week. Our daughter was ill, and needed to be taken to the out of hours doctors which involves two buses and about a 45 minute journey. It was 10 o clock at night when we set off. We have no car, and therefore no car seat. A taxi wasn't an option for us as its against the law (and common sense) to travel without one. We managed to get on all the buses we needed with our sleeping and ill daughter in the pram. If we had been forced to get off the bus for a wheelchair user we would have been literally stranded in an unfamilar area late at night with no way to get home or to our next destination, with the buses being every half an hour, it would have also meant we had lost the doctors appointment, starting the process all over again.

Not only that we were so lucky to get the last bus from the doctors into town with 2 minutes to spare. Again, with a sleepy and ill child in the pram. If a wheelchair user had got on, would it be right that we would have been forced off into the night, because they have "more priority".

Im not suggesting that it would be right to leave the disabled person there either, and thankfully where we live there is space for both. What I am saying is that sometimes it might involve some negotiation of the limited space available. we could move the pram around, etc.

There are no easy answers to this

The decision letter from the DWP

I am moving between laughter and anger at the moment at the letter from the DWP about my mandatory reconsideration.

They haven't read it. I repeat, they haven't even read my mandatory reconsideration statement. The one I spent days writing with a lot of help, that contained an evidence based log of how i was entitled to all the different points. They didn't even bother with it.

Ten weeks of waiting and they couldn't even be bothered to read it. I know this because the reasoning they used to come to the same decision is using the same flawed arguements in the first place that I countered with the mandatory reconsideration. The main one being that I was well dressed at the ATOS appointment, despite the fact I wrote that yes, of course, that is because my husband prompts me to dress in the morning. He was doing his job. They still stated this in the new decision letter.

They accept that knifes are triggering for me and that its not safe for me to use them, but as this isn't for "the majority of time" they think its ok. I'm not a professional knife thrower, so I don't tend to use knives for the majority of the day, only once or twice.

they seem very insistant that as I don't take any anti aniety medication I cant be anxious. Does anyone want to point out the problems with this idea?

I like the idea that they don't see that I am recieving any input from a specialist, but list in the evidence the letter from my specialist psychotherapist. Yes, they really did. I have a joint bank account with my husband so have no problem with managing finances, that is the biggest leap I have ever seen there, one I responded to the first time, and they ignored.

I am angry that I have to even take this to appeal, because the level of stupid this has reached is unbelievable. but hey ho, its off to appeal i go.

I have decided

70 days, 9 weeks 6 days later, the DWP have reconsidered the original decision to award me zero points and have decided to award me zero points..

The more intelligent amongst you might notice that the same amount of points were awarded before the reconsideration and after it. This is after 9 weeks and 6 days of careful consideration and thought as to how the hell they can get away with awarding someone with so much medical evidence zero points.

It took a lot of searching through the DWP assessment guide and the law to find the loopholes that made this possible. They employed the people at ATOS to assist in their quest as well, as the people at ATOS are more expert on the impact of disability, illness and impairment on peoples daily life than people themselves. They wrap this up to call it the medical assessment, but in reality it is more of a case of looking at the medical evidence and deciding which bits are going to make the claimant look like a fraud and use those.

The DWP decision makers letter is the best though. Every decision is clarified with the words I have decided and therefore. So if the DWP have decided you are perfectly able to do the activities set out, then you can naturally do them, a little like a modern day Jesus, take up thy bed and walk. I have been trying this whole malarky out in real life but I don't seem to have the DWP knack of this yet. I tried it out on my toddler tonight. I said with great authority "I have decided you are asleep" but all she did was pretend to snore and giggle when we erupted into tears of laughter at her reaction to DWP logic. I'm planning on trying this in other areas of my life soon too, I have decided that I have lost 3 stone in weight, I have decided that I have won the lottery, that sort of thing, will have to see how it goes. #bythepowerofATOS #bythepowerofDWP

I have to write this, I have to laugh. I was expecting this all along, and expecting to have to appeal. I am exhausted but being kept going by my lovely husband and toddler who love me unconditionally and usually more than that.

We are doing ok. When I got my last higher rate care and lower mobility DLA award three years ago we knew this would be my last DLA. We started saving where we could so we could have a buffer.

Our housing benefit is being paid (after a fashion, thanks to the council) and we have some practical support from our GP. We are getting food parcels from a food bank and generally surviving as best we can. We have a few tricks up our sleeves, namely this place https://www.approvedfood.co.uk/?afid=5d03ea where we can get nearly out of date food really cheaply. We have a charity shop that we can get 4 items of kids clothes for 1.50. We are using cloth nappies. We are surviving, on a practical level at least.

So, time to go the CAB again, get an appeal written and sent off, and start the wait all over again. 

just to add, my DLA enabled my husband to claim carers and us income support. We can't claim other benefits because we can't comply with the requirements needed ( JSA and ESA for eg. would mean my husbands carers allowance claim would be in question, and my GP doesnt know enough about my condiiton to sign me off for ESA)

the morning after

The morning after. I still feel empty and broken and iv still got a massive mess to sort out.
But I'm here.
As anyone who read the guardian article about me a few weeks ago will know I have PTSD, a fact i didn't want to reveal nationally but that's what the dwp and Atos forced me to do, just to highlight the sheer trauma they put me under in my assessment.
I think most people have heard of the fight/flight mechanism when faced with a difficult situation. You either fight or you run. Mine is kinda broken and I tend to run when I can't cope. It's not planned and its certainly not safe. I exist in a dream like state, not really aware of myself or things around me.
Im feeling more grounded today. More aware of myself etc. But not great. And would still like to disappear from the world I currently live in.
Im having to deal with the crushing reality of being the chief income earner, all our money as a family came from my DLA (and income support and carers) which has all stopped. All the responsibility falls on me. Im not making a political statement but I know full well that my husband would get more money as a single parent, and that really doesn't help in my current state of mind.
Im going to get in contact with the cab and my mp on Monday and see what's happening. With such a target driven culture, surely the dwp will make a decision soon, if only to make their targets

ten weeks

I wish I could explain what ten weeks waiting for the dwp to reconsider their decision is like, properly. But I can only write down the facts as any emotion attached to this process has long since gone.
Give it another two weeks, next week, tomorrow. Every excuse to keep ringing back is given by the dwp operators, but none of them knows what it means in reality to tell someone late on Friday to try next week.
1st April they got my request to look at my claim again. They have admitted that the first medical was wrong and threatened me to undertake another, despite the medical evidence and other evidence I have submitted.
I have contacted the media 4 weeks ago and then felt forced to contact my mp 2 weeks ago. Im still waiting. With the excuse that it should be taking "up to 9 weeks". They don't know what to say when I say its been 9 weeks apart from try next week.
Ten weeks with no money, everything relied on my DLA before. Ten weeks of being impossible to budget because everything will be sorted soon, but nothing ever is. The extra costs don't go away because the benefits have gone. I tried living like that but it was impossible.
I cant cope with waiting anymore. I can't cope with the relentless fear of the telephone and letterbox. I cant cope with having to wait ten weeks to be once again told by the dwp that im not sick enough to qualify and have to start the wait over again for appeal.
This is me signing out. I have tried and failed to wait but can wait no more.

Mental health and PIP

I am concerned. I am really concerned.

In my PIP medical report it stated that I receive no mental health support so therefore don't qualify for having any recognisable mental health problem. What the ATOS assessor actually meant by that is that I don't qualify for any NHS mental health support.

I am a frequent reader of many forums and this theme seems to be appearing again and again. The ATOS assessors are justifying their reasoning using the fact that people are not accessing NHS mental health services, even if they have done previously and are now under the care of the GP.

I only need to do a quick google search to find  these articles and headlines:

There can be little doubt that the mental health sector is under pressure, however understanding the nature of those pressures has been difficult.
http://www.kingsfund.org.uk/publications/mental-health-under-pressure

More than one in ten (12%) people with mental health problems are stuck on waiting lists for over a year before receiving talking treatments and over half (54%) wait over three months, reveals a new report launched by the We Need to Talk coalition of which the mental health charity Mind is part of.
http://www.mind.org.uk/news-campaigns/news/people-with-mental-health-problems-still-waiting-over-a-year-for-talking-treatments/#.Vz7TjRMrLnA

The mental health service in England is in crisis and unsafe, says one of the country's leading psychiatrists.
http://www.bbc.co.uk/news/health-24537304

This leads me to the conclusion that in order to be able to access NHS mental health services you need to be considered seriously unwell  before they will even consider you for treatment, and even then that treatment will be severely limited by funding. All of this is well known to "service users" like myself. It is damn near impossible to get NHS help, which is why for me personally I used my Disability Living Allowance to pay for private treatment.

I now want to highlight the sort of treatment that is available on the NHS, usually for people whose mental health is deemed "mild" or moderate" (but considering how stretched the service is, the definitions are also stretching to include some people who would traditionally be classed as severe).
Cognitive Behaviour Therapy (CBT) is the NHS talking therapy of choice. It is relatively cheap and relatively effective. It can be delivered in a variety of different ways, depending on the client group (and sometimes geographic location).
http://www.nhs.uk/conditions/Cognitive-behavioural-therapy/Pages/Introduction.aspx
I want to highlight a  few sentences from this page here:

"The course of treatment will usually last for between 5 and 20 sessions, with each session lasting 30-60 minutes."

"CBT cannot remove your problems, but it can help you deal with them in a more positive way."

It is not a cure, and it is a short term therapy. It relies on the person being in a position to be able to engage with the suggestions and to practice them daily and apply them daily. It doesn't (unfortunately) mean a nice quick fix and the person is sorted, it is trying to teach people how to live differently. There are problems with CBT, there is a good post here to read about its limitations here: 
https://everydayproblemsolving.wordpress.com/2010/04/12/cbt-from-an-everyday-perspective-part-ii/

but I am not going to into details, everything has its limitations. That, in this post is a side issue.

The main issue coming from these two points is this: NHS mental health services are limited, and any therapy you can usually get from the NHS is CBT based, which is short term therapy, around 6-20 sessions.

Going back to the ATOS assessment, why are they assuming that anyone who doesn't access NHS mental health services is not mentally ill, when the NHS is so stretched that if and when people can get treatment it is only short term therapy, not designed to cure a persons mental ill health?

People with mental health problems are increasingly looked after by their GP, even those with severe problems. People are looking to private treatment because there is very little on the NHS. People are not lying or saying their condition is worse than it "appears on paper". It is the very simple fact that the help is not there for them to access.

I feel like people with mental health problems are being punished twice over. The NHS for failing to care for them and from ATOS and the DWP for failing to take this into consideration for benefits assessments. 

down the rabbit hole (the week that was)

i dont really know where to start with this blog. Mainly because so much has happened and its all floating around in my head, feeling like it is crushing me down. So I guess I will start at the beginning.

After 6 weeks of waiting ATOS replied to us regarding our complaint. They admitted they did wrong, the assessment should have never taken place in the room with no soundproofing and it was only a temporary measure used for that day.

I got angry, I got very angry, I felt like ATOS were saying that they did it and they don't care, after all I am just a disabled person, why does it matter?

So, I wrote a letter to the DWP adding this evidence to my original reconsideration statement, which is still in progress, nearly 8 weeks after submission.

I also contacted the guardian. I am of the opinion that the personal is very much political. I didnt go to them with my story for my own personal gain, I went for everyone who didn't have a voice, or a letter from ATOS admiting their mistakes. I went to expose the systemic abuse that is happening to disabled people right now in the benefits system. Quite simply, it was bigger than myself. I felt willing to forgo my privacy to expose yet another failing in the system.

So, the article was written:
http://www.theguardian.com/commentisfree/2016/may/12/benefits-assessment-ptsd-benefit
and it was well written.

But then I felt like Alice as I tumbled down the rabbit hole unable to stop the chain of events, either as a result of the article or my letter to the DWP highlighting the ATOS complaint letter.

I received a letter on friday informing me of another assessment, this time conducted in my home, next week. I am currently in panic mode. I can't describe what im currently going through, as it is really hard to put down into words what the thought of another assessment is doing to my head. I am also very clear that this will not be happening in my home. I need it to take place in a grey, anonymous office away from my life and certainly away from my place of safety in my home. Having ATOS there will feel like a home invasion. Just NO.

I have rung both ATOS and the DWP and neither know why I have been issued with this appointment. I have spoken to both the CAB and  another independent advice service who are both unsure as to what is happening. We are awaiting a call back from the DWP tomorrow to see if a manager can tell us what is going on.

In the mean time my husband has written a letter explaining why another medical is inappropriate at this stage. Its just too late for them to be gathering evidence.

I have also taken a step that I didn't think I would have to, I have contacted my MP. I didn't want to because it feels like I am being selfish, but as I am currently travelling down the rabbit hole I need all the help I can get to land safely and move on from this experience.

Answers on a postcard as to whats going on, and whats going to happen next.

Monday update: Im not really sure whats going on anymore. The DWP and ATOS are denying all knowledge of ever speaking to each other and I feel like Im in the middle of some sort of lovers tryst, or fight between them. I just want them to throw out the mandatory reconsideration so I can take it to appeal for them to laugh at it all. ATOS or the DWP say theres not enough medical evidence to make a paper based medical happen, but then say that its too personal information, but then say they are the only ones able to tell me what my life is like on a day to day basis.

and they wonder why the suicide rate is going up...

transcript

transcript for this voicemail: http://justiceforlb.org/a-culture-of-candour-justiceforlb/

Good morning, hello, hi, I believe this is a message for Dr Sara Ryan, um obviously on the media (not sure on this any help?) into the care of southern health. I work for southern health and I feel awful that you lost him I’m so sorry that you have done, it’s tragic, and, I hope you find some closure after the report, the issue of the cqc today, but I do think you are being very vindictive. I think you are a vindictive cow

On tv all the time um slating NHS southern health, with your intelligent background, ya know as much as much as anyone else knows, that southern health only took over those units in Oxfordshire recent you know the recent months before , before your son died.

You know, with your background, it takes a while to make changes in anywhere, and I think now your (on a mission) (again I think that’s right sorry on this word), you want some attention, but you are vindictive and you are unpleasant, and you are a nasty cow.

933am Friday april 29th