Non-partisan UK-based Disability campaign. Advocacy for people with invisible illness and/or physical & mental health conditions. Also Carers, their Families and Friends.
Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us.
The last time I felt this threatened was at the age of 13, when I refused to return to my mainstream secondary school after Christmas and New Year, and my parents (and others) tried to force me - or, at least, tried to forcefully "persuade" me.
As an undiagnosed Aspie - Asperger's Syndrome person - decades before that term was in common use, possibly before it was even coined, a mainstream comprehensive school was as close to a vision of hell as makes no matter. Nowadays I know all the "gen," as do the professionals - I have an extreme need for structure, stability, predictability, and routine. All things singularly lacking in the environment of a mainstream secondary school, where I was constrained to go from room to room, from teacher to teacher, and even from one set of class-fellows to another; I was cast adrift in a sea of flux, tasked with the impossibility of (metaphorically speaking) playing billiards while astride an unbroken horse.
Back then, I was not able to express my distress with anything much more articulate than "ouch," if I could manage even that.
Luckily, they gave up that day; I was not literally manhandled away, kicking and screaming. Sanity prevailed. After a series of appointments with Child Guidance people and so on, after some months I was referred (at public expense) to what was then called a "residential special school for maladjusted children," located some miles away from my hometown; sure, it was an unknown quantity, but as sure as hell it could not possibly be worse than what I had been facing for five days a week for what were already too many years.
Largely by happy accident, that school gave me what I needed: structure, stability, predictability, routine. Security. While it wasn't perfect - what is, where mere human beings are involved? - it was infinitely preferable to what I had previously been facing, up to New Year when I was allowed to "get out of the kitchen," and first allowed to be "at home with permission."
Of course, there was a serpent in this Eden. The law only required that I be educated up to the age of 16, and no further; since where I was was not exactly cheap, no way would such an establishment cater for post-16 education on the premises. There was a possibility of staying on and using the residential school as an hostel while attending a mainstream sixth form in a nearby town, but an interview with the Head of the school with that sixth form confirmed to me that I was just as "allergic" to mainstream education as ever.
So I had had respite for such a short time - a mere two academic years.
I went to a College of Further Education in my hometown, and while I passed three of the four "O" levels I took - at reasonable grades - I was utterly miserable at this time; I was grieving for the safe haven that I had lost, the comparitive paradise from which I was now forever exiled.
In no way did I want to repeat my sojourn at the FE College, so I did what I never thought I ever would; I returned, in the sixth form, to the school I had refused some three years before. A few things made that bearable; the bullies that had made my life hell were gone by then, and I was only studying for two "A" levels rather than three, so I had plenty of "recovery time" in the sixth form study room, which was quiet and secluded. I well remember the day that it was closed for some kind of repairs, and I had little option but to go into the sixth form common room, which was open-plan and noisy and very intimidating. Thankfully, the study room was not closed for long. I passed both "A" levels, but not at high grades.
I then spent three months at a Polytechnic in London, while living at home and travelling in four days a week; this was hellish to the max, and again after New Year, I quit this course. I needed a structure and support that just wasn't there; I didn't know it, and even if I had I doubt that at that time it would have been there for the asking. As far as I was concerned, I was back in "Ouch" territory and I had to get out for the sake of my own mental health.
After some months of rest and recuperation, part of this time being on the then Supplementary Benefit - the predecessor to Income Support - I applied for a local job as a Programming Assistant with a major defence contractor. It was the first job that I applied for, and I got it; those were different days! I spent fifteen years with that company, reaching the rank of Analyst Programmer, until the fall of the Berlin Wall and the "peace dividend" led to the inevitable defence cuts and eventually my name came up in one of the increasingly frequent rounds of redundancies. In some respects I was glad finally to be made redundant, as at least that increasing sense of insecurity - would it be me next? - was now over.
I tried various avenues in search of amenable work, meanwhile being in the very unamenable and totally mainstream-oriented "jobsearch" activity as required by the predecessor to today's DWP. Welcome, once again, to "Ouch" land. It couldn't last; in the year 2000 I went down with some flu-like virus, which totally poleaxed me. Recovery was slow and incomplete, and I was tired all the time - when I was awake at all. I asked my GP to free me from the treadmill of Jobseeker's Allowance, which I could no longer tolerate. I successfully claimed Income Support in lieu of Incapacity Benefit, on the grounds of post-viral fatigue.
My first Personal Capability Assessment (PCA) was done on a handwritten form; my Income Support was renewed. My second PCA was done on handwritten form; my Income Support was again renewed.
My third PCA was done on a PC, using the utterly discredited Atos LiMA system - not that I knew this at the time - and my Income Support was discontinued. Naturally, I appealed, and learned a lot of things very fast indeed - part of which was that I revisited my old psychological reports from my teenage years (copies of which I had acquired from my old school), and suddenly the penny dropped. There it was, in black and white - observations from trained teachers, an educational psychologist, and a child psychiatrist, which added up in today's money to a prima facie case for a diagnosis of Asperger's Syndrome!
I approached my GP with this evidence, and he agreed, referring me onwards. A generalist psychiatrist agreed, referring me to a specialist in the field; eventually, after long delays in the system, I received a formal diagnosis of Asperger's Syndrome. This was not in time for my appeal, which I won by other means, but was to prove useful later.
Shortly after winning my appeal, I received another form preparatory to another PCA. This time, I gave them both barrels; I now knew from the legislation what questions they were really asking in the mental health assessment, and I now had a good case under Regulation 27(b): "...he suffers from some specific disease or bodily or mental disablement and there would be a substantial risk to the physical or mental health of any person if he were found capable of work."
That form, when I returned it, had more additional pages than original pages. It had the desired effect; I received confirmation of continued entitlement without even having to attend a PCA in person, presumably under Regulation 27(b) (though the letter did not actually mention any specific Regulations by name).
Three years later, another form. Sent back with the same information, adjusted for the passage of time. Nothing heard for several months. Then a letter asking me to attend a PCA in person. Not good.
Protecting my interests as far as possible - by recording the proceedings, with the full foreknowledge and co-operation of the DWP and Atos - I attended the PCA. In connection with this, I have two separate complaints submitted to the DWP (correspondence not replied to or lost, nonsensical/insulting correspondence sent) and one complaint to Atos (communications not acknowledged/answered, communications responded to incompletely). So if I'm going down, I'm going down fighting.
I still haven't received a decision letter. I don't know if I will have to appeal - but if I have to, I will. The alternative to continuing to receive Income Support in lieu of Incapacity Benefit is the "jobsearch" activity (on JSA without even what a "neurotypical" thinks is support), which in its current form is about the most Aspie-hostile thing going - at least, it seems that way to THIS Aspie. I'd sooner be shot through the head, which would only hurt for a short time, then it would be over; I've been in "Ouch" land before, and I don't like it there (possibly the understatement of the year).
The waiting is the worst part, as they say.
On top of all of the above, the government's "cuts at all costs" agenda is extremely unsettling, and ipso facto Aspie-hostile to start with; since all this started, my anxiety levels have been much higher than for some time.
What is true for me must be true for countless people, many of them voiceless or not articulate enough to express their distress in ways easily conveyable to others. Some, of course, perhaps in the more advanced stages of dementia, will be unaware of the apocalypse that is about to be unleashed upon them. I doubt that this will prevent their moment to moment sense of discomfort at the resultant lower standards forced by the cuts such as those in the Mobility component of DLA.