Shropshire Council, The DWP, Emily and me.

I’m up very early again.  Over the years I’ve found this to be a regular pattern of mine when the worrying I do in my sleep overflows and wins. So I wake up, full of the worries I feel and can do nothing more than make tea and let them enter my conscious mind.

This week I had another run in with my local council.

They sent Emily a letter which was addressed to Phil. This was interesting because I've always managed Emily's affairs and I would have thought that my long association with Shropshire council would have burned this into their minds.

I tend to question them you see. In word and in deed. in fact this photo of me campaigning against yet another of their cuts to a day centre was actually taken outside their offices.

But no matter perhaps they forgot.

Anyway the letter that arrived highlighted an oversight on my part because they sent me a form to fill in in January and I forgot about it.

The reasons I did were various, I'd just discovered my dad had died , I'd just been told Emily's school was withdrawing her place and as Emily has no more than £10 in the world I didn't think a means testing form was at the top of my list of priorities.

The Finance department of Shropshire Council did though. So after not hearing anything this week they sent a letter telling us that the non appearance of the form led them to assume that Emily was able to pay for her care, for a six month period last year and that therefore they wanted approximately £75,000 from her.

I had to wait until lunchtime the following day to be calm enough to phone them. This proved not to have been long enough, however I didn't swear and I didn't raise my voice.

The unfortunate man who answered the phone did demonstrate some resistance to my thoughts by venturing that I could have emailed them  and that he understood.

I asked him if he was suggesting that by not emailing this justified them asking Emily for £ 75,000? He said no.

I asked if he had any learning disabled children, with the cognitive ability of a five year old and who had autism and epilepsy and he said no.

I ventured that in that case his comments were at best misguided. 

He seemed quite a nice man really.

This proved to be the case because the matter is now resolved, with him copying me into all his emails. 

This should never have happened in the first place. carers and disabled people in Shropshire should be supported. The letter cited the Care Act 2014 as their reason for the demand, but as I pointed out Local Authority's have their own responsibilities under this act and it doesn't mention sending demand letters.

This week I have an appointment with a representative of her majesty’s department of work and pensions. I don’t know the Queen obviously, but I do wonder if she knows what is being done in her name, by her government.

The appointment is for next week. The DWP have informed me that thy will be arriving to interview me at my home because I’ve requested that I act on Emily’s behalf in claiming social security. 

Without this social security Emily would have no money for rent or food or heating or water, and as Emily has the cognitive ability of a 5 year old and is unable to manage anything for herself due to her learning disability which is now called learning difficulty.

I don’t like that as a term. It must be deferred to as a term of reference though as a group of people with learning difficulties felt the term learning disability was reductive and for them they may be correct. So this change has been widely adopted. I mean no disrespect in challenging the term, I'm just want to offer another view. As I have ASD I could be included within the term so I feel it deserves a mention.

Interestingly this renaming happened at the same time as the rise in popularity of the “cool” joke epithet  “RETARD”. Perfectly reasonable people use it and many get highly offended if you suggest even mildly that it’s perhaps not a great term given it’s entirely targeted definition.  

Rather like GAY as an insult, the word retard retains it’s meaning. 

Learning difficulties isn’t descriptive enough I feel. Fred West had learning difficulties and still managed to perform unspeakable acts of torture, murder and sadism. 

So anything that distances Emily from him, is preferable to me.

Emily is disabled by her condition. It prevents her doing many many things. It sets her apart as a  target for hate crime and discrimination, as a target to be disenfranchised and neglected and ignored.

Its most worrying application for me though is that it’s a handy reductive term for services providers to group together those who have a range of conditions which give them difficulties.

If people are encountering a difficulty that requires less effort for departments to provide support, then it needs to be addressed as a term because I wonder often if this is exactly what's happening..

As I have got older I have difficulty with my eyesight and would really appreciate it, if the  tiny writing of labels was dealt with. 

My difficulty means finding my reading glasses, moving to better light or asking my 21 year old daughter, Lizzy, to read it for me.

If my mild issues were to be combined with those who are registered blind, so that we were all described as having sight difficulties, then my concern for the reductive nature of language, via misapplication, becomes obvious.

So I’m sticking with learning disabled because it’s a clearer term for Emily.

Next week I’ve been invited by the DWP to a meeting at my own home, at which they have kindly assured me I may, in my own home, ask a friend to accompany me.

I mustn’t worry because the DWP have told me that while they are in my home, I can feel at home and invite whomever I like, rather as though it’s my own home.

They’re coming to see me because in January I registered Emily for PIP and last week I registered Emily for Employment Support Allowance.

These are the new social security payments the former has replaced Disability Living allowance and the latter ESA seeks to prove whether or not Emily is fit for work and if not whether HM government deems that she is allowed to stay alive.

If that sounds dramatic then consider whether living without a home, food, heating and water for a 19 year old girl who is going to be effectively homeless when her school make her leave on the last day of June 2016, can be described any other way.

Because that’s the reality. Emily has the cognitive ability of a five year old.  Emily isn’t five she has the body of a woman, she has the hormones of a woman, she also has the vulnerability of a child.

I was told, by the woman who registered my claim that Emily may be subjected to the work capability assessment.

This test has been written about at length. The numbers of people found fit for work by the foot soldiers of the DWP and have died, often before the decision letter telling them their benefits will be removed, is very high.

It’s difficult to find the stories of the horror being inflicted on people like my daughter attempting to seek social security protection for a disability she can’t help, in much of the right wing press. 

They seem to prefer stories from a tiny percentage of fraudulent claims. 

The Sun even set up a hotline number to report people. 

So if you are a member of the public and have the capacity to look with your eyes and make a medical diagnosis, entirely bereft of medical training but equipped with  “your opinion”, you could let them know.

Strangely these tabloids and broadsheets seem less keen to detail the deaths of people found fit for work.

For that, you would have to visit The Guardian particularly Patrick Butler, or the Daily Mirror. That’s if you choose to of course. Most people who are unaffected by disability or long-term sickness, are happier to believe the propaganda narrative. It’s just easier.

People like Katie Hopkins, friend and apparent ally to Donald “the wall” Trump is enthusiastic in furthering that agenda with comments like this

The rates of those found fit for work and told they must find a job when they are too unwell to do so means that many have committed suicide.

GP’s warned the government many years ago that this would be the net result, as I wrote about here for The Independent but the DWP appears to be on a mission to prove that the welfare system is riddled with “scroungers” and “malingerers” so the many millions of genuine claimants, neglected by a test which suits its own ends, are collateral damage.

Emily is more than a statistic, Emily is a human being.