The bizarre world of disability and employment.

Do you want to work?

That is a simple question, isn’t it?

Until you try and answer it.

Saying yes to it can lead to all sorts of issues because the answer can hide all sorts of caveats.

So, do I want to work? The short answer is yes…with those caveats. I’ve worked for 33 years of my adult life so I am not ‘work shy’ and I appreciate the life-enhancing aspects of work. But there is a big but in the way of that.

I’m Autistic. I need a job with routine, where change is discussed ahead of time, and where reasonable adjustments can be made. I also have ADHD so have to factor that in, as well as fibromyalgia which adds a physical aspect to my overall well-being.

So, I couldn’t, as an example, work in a factory, or stock shelves, or spend long hours working on my feet, or do a lot of walking. Just working will wear me out so I need to monitor how much physical activity I have to do in the course of the day.

And I don’t want a job that is endlessly repetitive. As much as routine is good for me, the lack of mental stimulation can be a major drawback and harmful as it leads to boredom and a desire to leave that particular post.

So I need a job that suits my needs and my ability to cope with it. I am not a square peg to be hammered into a round hole just to keep the government’s statistics looking good. And finding the right job, when you’re disabled or differently abled, is bloody hard. I don’t want, having had a breakdown, to have another one. I don’t want to let a prospective employer down, and I don’t want them to feel pressurised into offering me a job.

In an ideal world, I would work in travel. It’s my passion, my interest, but a role I am totally unqualified to do. I don’t have a degree, the customary request of almost all employers for all jobs these days, or so it seems. But I do have experience of travel, I enjoy research, I enjoy planning holidays and I believe it would be a good fit for me.

But my chances of achieving that aim are almost zero. I’m 57, I’m Autistic, so who is going to take a chance on me for the next 10 years?

It’s all very well that the government want the disabled to work, and many of us do, but some of us can’t just work for the sake of working. It just doesn’t work, excuse the pun, like that.

I’ve had a work capability assessment. I’m ruled unfit for work. That assessment concentrated wholly on my fibro without looking at why I had left my previous employment or my breakdown so I don’t even know if that’s been factored in. And that’s one medical assessment.

I was also assessed for PiP and the government has failed to realise that a WCA is not the same as a PiP assessment. PiP and being assessed for work are two very different things, looking at different aspects of life. PiP is to support a person with living costs, it is not assessing whether I can work in a supermarket or become the head of ICI. Saying that one assessment will deal with all aspects of life, unless it is dramatically changed, is nonsense.

Does this mean that only if you get PiP you will be exempt from work? But if you don’t then, no matter your illness or disability, you won’t get any help unless you strive to get a job…which is a job in itself. And what about sanctions? Disabled people are more likely to miss appointments due to changes in their health or access to the facilities required. How is that going to work? Are work coaches, with whom I have some sympathy, going to be given greater freedom in judging which excuse is genuine and which is not?

I have grave concerns about the current plans and must hope, as I am sure many disabled people do, that they never see the light of day. They are designed to fill us with dread because not once has this government demonstrated the slightest empathy with our situation.

So yes, I would like to think I would work again, in some capacity, but I’m not going to die in the process.

Let’s talk about work!

Most people know that I’m Autistic, have ADHD and Fibromyalgia. I’ve also had two strokes and in four short weeks I will reach the dizzying heights of 57, still ten years short of getting my state pension.

My last job ended in a mutual agreement that I should leave for the date of my sanity. It caused my meltdown and left me scared and scarred of entering the workplace again.

But that is not to say I don’t want to work. Money is useful and there is something to be said, according to my better half, for some limited human interaction. And certainly for using the brain cells.

I’ve spent 23 years in the civil service. I’ve done administration work for the Parachute Regiment and Royal Green Jackets, I’ve been involved in clerking some very high profile criminal trials such as that of a certain Liverpool goalie, I’ve been trusted to train others and I’ve been head hunted for a specific role in determining costs. I’ve been the guy to make the big court openings go smoothly by reading the letters patent and generally speaking, in roles I’ve enjoyed, I’ve thrived.

Then I’ve spent 9 years sorting out tax problems for vulnerable people. Dealing with HMRC, organising appeals, getting debts cancelled, saving people money and in many cases, their sanity.

And yes, if I enjoy a job then great but the truth is, enjoyment is not love. I have been good at things I really don’t enjoy and the things that really interest me, eg Travel, are beyond me due to the lack of qualifications.

I have spent years training to be a counsellor only then to have my course funding ripped away and given to Afro-Caribbean hairdressing, I kid you not, and now find myself miles from any study centre anyway, even if I could get back into my training.

So, when it comes to work, I’m not qualified or can’t become qualified and people, whilst well meaning, talk about my skills without appreciating that I don’t have any. I’m not an IT whizz, I don’t do courses, I don’t go to meetings, I can’t do Excel, I know nothing about HR or project management or…and the list goes on.

I don’t have the stamina for long shifts or shop work and I can’t stand up for hours on end. And all that means is that every time employment is mentioned, it is assumed I can only do, or should only do, office workers and be a grunt.

And I’ve done that. I don’t want to do that again. I’d love to have a paying self employed career. I’d love to be a photographer or a successful writer, or work from home as a travel agent but one, I don’t have a decent camera, two, my books don’t sell and three, companies want anything between £8-10K to set you up as a home working travel agent. And I’ve not got the sort of money to waste if it all goes wrong.

So I’m not saying no to work. I’m saying no to the wrong work. If I work again then it has to be the right thing and this time it has to be for me. I need to feel valued and fulfilled, not treated like shit and my conditions ignored or brushed aside. I want something, even if it’s 6 hours a week, that makes me smile, that leaves me with the ‘That was good’ feeling. I don’t want to be a pen-pusher in a dead end job. Trust me, that will kill me.

And I’d rather be living.

Churning!

There’s a lot going on at the moment.

Only there isn’t. It seems to be, but perhaps only in my mind which, it must be said, is struggling.

I feel overwhelmed but don’t know why, or rather I do, but don’t want to say because I’ve said it all before and nothing has changed, so there’s little point rehashing old stuff yet again. It doesn’t change things, not really.

The future looks bleak. Not mega bleak, as though it could all end horribly tomorrow, but that bleak, nothing is gonna change bleakness where you question if you have the stamina for it and can bear merely to exist without any light at the end of the dark tunnel.

I’m so confused about so much. My mind churns constantly with the practicality, or impracticality, of things. What do I do about work? Should I work? Can I work? Can I find the right job for me given my age and medical issues? I don’t want to do too much and feel overwhelmed but, on the other hand, I don’t want to do too little or too much in the wrong job and find boredom has set in or I’m not getting any job satisfaction and resenting it. I’m Autistic and the wrong job could destroy me, plus I’m almost 57, and we know how hard it is for people my age to find work.

My writings failing. No, not to the point where I’m going to give up, but to the extent that I’m not quite there with it. I hoped for a little more interaction but I don’t know my target audience…unless it’s just me…and I can’t buy my own books. I don’t seem to get the reviews I need to give it a boost and I’m pretty certain it’s not reaching the right people despite my best and expensive efforts.

I’m churning away. Churning in my head, churning in my writing, churning in my sleep. Feeling anxious, fed up, exasperated and at a loss to know what to do for the best. Story of my life.

But what else can I do? The world keeps on turning, and I must keep on churning.

Stop policing my diagnosis!

I’m sad. I’m sad I have to write this. I shouldn’t have to write this.

But I do, because the Autistic Community has decided that I cannot refer to MY diagnosis as Aspergers.

Yeah, you read that right. The community, (insert hollow laugh here) is policing My diagnosis.

Self-appointed guardians and leaders have decided that my diagnosis isn’t one that should be mentioned. No, I must only refer to myself as Autistic because using the term ‘Aspergers’ is too terrible to contemplate.

And these self-appointed leaders seem to think I am truly an idiot and that I don’t know the awful connotations associated with using the term ‘Aspergers’. And I do. I am well aware of what he is alleged to have done and his Nazi sympathies. I know, because I’ve read.

But what these leaders fail to recognise is that in amongst the bad, Hans Asperger recognised Aspergers. He recognised what I am. ME. My diagnosis. And yes, whilst the DSM no longer recognises Aspergers as a separate diagnosis, you can’t turn back time and simply rub out people’s identities because of what is known now and modern sensibilities.

But that seems to be the way. Anything distasteful in history must be hidden or renamed or not spoken about for fear it upsets someone or it offends them. Well, be offended! Nothing happens. We all get offended by things but it doesn’t hurt us. We may not like it but that’s tough. It isn’t our job to say that X can’t call herself ‘Trudy’ because it offends us. Or that Y is a Zebra when really it’s a horse because it offends us.

You’re offended because I say my diagnosis was Aspergers? Good, then be offended. It’s nothing to do with you and it doesn’t affect you unless you decide to get up on your high horse and pontificate about it. Which nobody asked you to. You want to be called ‘Autistic’, that’s fine by me. There is no moral outrage here. I don’t care because it DOESN’T AFFECT ME. You see?

So stop it. Stop tell me what I can or cannot use to describe me. Stop invalidating me. Stop telling me how angry it makes you when the NT community polices us and realise that is exactly what you are doing.

I shouldn’t have to write this. I really thought we were better.

Look how wrong I was.

It’s finally over!

After several long and painful months, it’s finally over.

I have a couple of things to sign and then I will be free and perhaps, just perhaps, I will sleep at night. Leaving work has been difficult. It’s been difficult for a number of reasons that I can’t talk about but suffice it to say that my health has suffered as a result and now, with that behind me, I need to start looking after myself more and look to the future.

Boldly, I’ve purchased a new suitcase. I may never use it but having it gives me hope, if you can understand that; hope that we will travel again and therefore it was a reasonable thing to do.

I don’t have any immediate goals. There will be benefit applications and things like that to do but now I just want to chill; sort my life out and try and get myself back on an even keel. I have books out and I do want to write more or at least write regularly so that I don’t lose touch.

Work? is an unknown quantity. do I want to? Perhaps but only if it’s right and being conscious of the difficulty in finding posts that are suitable for Autistic people. Home working would be great but I am not jumping from the frying pan into the fire and will be patient and see what comes along.

But I am glad that it is all over. I look back on ten years of doing my best with some pride because I know that I fought hard to help a lot of people in that time and that I was able, in some small way, to make their lives better.

Until next time then.

Cya.

Falling down ….again.

This malaise is wearing me down. The apathy, the drudgery, the sameness of it all.

I think I should write my blog but then those feelings work their way into my psyche and beat me down and I realise there’s no point because I have nothing to say, or nothing to say that people want to hear.

I’ve lost enthusiasm. I’ve lost the ability and poetry seems a struggle now. In fact I can’t recall the last time I poured myself into writing any.

I read stuff by others and my sense of failure just grows. So much better than anything I can write, more lucid, more fitting, more cutting, just better in every aspect. My once flourishing vocabulary now seems pitiful in comparison.

The day seems long. Just one continuous day broken by occasional episodes of disrupted sleep. Is this 2021 or 2020 part 2?. Nothing changes and the light at the end of the tunnel is hidden behind layers of gloom. The weather is miserable, constantly dreary and grey with the hills hidden in the mist and the repetitive nature of my limited exercise only adds to my misery. Familiarity is indeed breeding contempt.

Work is work. Unchanging, miserable, dreary, like the weather.

I should be happy?. Autistic happy?. Routine, no distractions, no people? But I’m not. I just yearn for brighter days and something different because although the routine and lack of distractions are lovely, this isn’t my choosing, this isn’t my set up. I’m cramped on a tiny table, missing the things I need, struggling to cope when I get calls I can’t handle, wary of another meltdown and wanting to cry,

I’m forced into it. No time to arrange…sort myself out but thrust cruelly into the situation and trying to do my best…and then feeling it’s not enough.

I’m not alone, I know that but my ADHD is rampant and my Autistic senses are in overdrive. I’m masking even though I don’t need to because I can’t get through to people and get them to see. I seem to spend my life worrying that I can’t educate others about me and that’s yet another failure on my part. It’s so tiring and confusing.

Travel, my love, is now so unlikely I feel my heart breaking. I can see no light in the tunnel nor feel the heat upon my skin. I’m beaten down by others, the anti-vaxxers, the headline quotes who never read the whole story but use the headline to make false points, the liars, the cheats and just the nasty vicious inhabitants of social media and the wider world.

The news destroys me with its unrelenting misery. It’s continual focus on death and gloom and trauma. It’s giving me ptsd just from watching the horrors unfold. I know they are there, I know they are happening but is there nothing good in this world?. Nothing good that is newsworthy? Nothing happy?.

I’m tired. I’m tired of everything. I’m tired of living. I’ve had enough.

I’m falling down.

Again.

But this time I don’t want to get up again.

The weight of expectation..

My football team should walk the league.

No doubt about it. Every other team is so inferior that they should just submit and let us win.

That was the attitude of some fans before the season started. Now we are third from bottom with 4 points from 7 games. And the football is..not good.

That’s the weight of expectation playing on the players minds. Half the time they’re paralysed by indecision and afraid to take any risks.

And there’s the rub.

Because the parallels are there with my own life. I’m constantly afraid to make a change or a choice and I’m very reluctant to take any risks. Of course I’m not alone here, I have someone else to think about but I wish I had that clarity, that moment when I could see the future and everything fell into place.

But that moment never comes.

I’m constantly stressed and anxious about work and wish I could just leave but the climate isn’t right to get a new one and my age and health are against me. Plus being Autistic means that the right job is always harder to find.

I feel torn in so many ways. My colleagues with their nice houses and partners in well paid jobs are something I aspire to but down here average house prices are about 10 times the average UK salary and I don’t even earn half of one UK salary..and my partner earns less than half of what I do.

Which brings on moving to an area where property is cheaper. And where I don’t have a job and that brings up stress and anxiety about money and finding work. And that sucks.

It’s also a horrible time to be house hunting anywhere. Viewing is fraught with restrictions and dangers and you can’t really drive up and down the country passing through covid hotspots to look at them. That’s a risk not worth taking at this time.

Do I have unrealistic expectations of myself?

I don’t know because my mind is really unhelpful when it comes to decisions. It hates making them. My Autistic/ADHD brain goes all gooey and soft and it wobbles like a jelly instead of saying “Do this!” and telling me to get on with it.

I had dreams but now they seem to imaginary and faded that it’s no longer wise to have them. Circumstances alter cases and my mind, my partners needs and this sorry world we live in have all contributed to my lack of decision making in recent years. How I hope that changes.

Wandering

I’m wandering.

Wandering through memories. Memories of places I’ve been, trying to recapture those moments, the sights, the smells, the heat, the noise.

I’d like to wander again.

I need to wander. I need that goal, that target if you will.

Without it I shrivel up and become a mere shadow of the person I am when I’m wandering.

Hope. It’s an elusive thing for in truth I hope little for myself. Grandiose ideas and fanciful dreams are just that now for I am no longer a young man and cannot turn back the steady advance of time.

Older, not wiser. Weaker certainly with the foul annoyance of Fibromyalgia giving nothing but varied levels of weariness and pain. Frustration then, that whilst I’m still capable, we find ourselves trapped in bubbles whilst an unseen virus reaps havoc amongst us.

I miss it. I miss everything. Lengthy anticipation, painstaking research; days when TripAdvisor and I were on speaking terms. The place where I’ll lay my head, the plane I’ll sit on, the things I’ll see.

Those are the days. Good days. In fact my best days. My best day ever.

Poring over brochures, comparing websites, adding costs, contrasting prices, booking leave. Airport parking, airport hotels, lists of what to pack, lists of what not to. Checking temperatures, flight times, departure and arrival times, time zones, free time.

There’s a kind of Autistic ecstasy in doing these things. They excite me in a way which, to the ordinary person, might seem amazing for they appear so mundane, so run of the mill, in some cases even unnecessary but that’s it, the finer details, the joy of knowing, of being prepared.

Times passing and I yearn for a time to wander once more. To walk paths both familiar and unfamiliar, to see new places and see again old friends. Times passing and the years grow shorter. The autumn of my life is here and each leaf that falls reminds me that I might only have a few years of reasonable health in which to see all I want to see.

This pandemic; this accursed thing has blighted my life in so many ways. Tragedy, inconvenience, frustration, the impact on my mental health, the one thing that wandering puts on hold albeit briefly.

Wandering. My minds wandering but oh boy, do I wish it were my feet!.

I’m not rain man

I’m not rain man

Drop matchsticks

Watch me count them one by one

Clumsily dropping them as I go

I’m not rain man

I can’t tell whether your birth day

Was a Tuesday

Or a Friday

I’m not rain man

I can’t draw an image of vivid detail

Drawn from a single look

I’m not rain man

I can’t recite pi to a million places

Or do fancy equations in my head

I’m not rain man

I’m not the Autistic person

You are looking for

I’m not rain man

I’m not the genius

That you expected

I’m not rain man

I’m not the answer to all the worlds problems

I’m just

Me.

Does that disappoint you?

Because of what you’d heard

Because of what you’d read and seen?

Then I’m sorry

For your unrealistic expectations

Of me.

I’m not rain man.

I’m Autistic.

And that’s all.

Washed away by the tide.

Things are not going well.

Understatement. This week I’ve reached out for support to someone who should be on my side where work is concerned, someone who should look at what I have to say and be supportive.

Well I’m sure you can guess how that’s ended.

I’ve been told I’m wrong. Basically told that I don’t see what goes on and that therefore my …..concerns…are wrong.

Of course that ignores the fact that some transparency…some…communication might be useful…so I wouldn’t misinterpret in the future?. But that doesn’t seem to occur to them.

The fact I’m Autistic also seems to be ignored. Probably brushed under the carpet with the rest of my concerns. I’m not asking for special treatment but I am asking to be treated as an individual. Sadly I think that’s too much for them.

I’m frustrated. Frustrated that the points I make are ignored. Of course I expected it so I guess I shouldn’t torture myself by doing it again but I can’t help it, I find it so hard to let things go.

And I’m sad. I’m sad that the person just toed the party line, unwilling to deviate from it, unwilling to admit that any mistakes were made.

I came away from reading his email thinking..no, believing that I’ve done something wrong. I haven’t but that’s how it feels, the lone voice in the wilderness, the odd one out, the black sheep of the family.

And that’s how it always ends. Me, on my own, wanting support, wanting to make things better for others but being the only one who seems to care.

And being washed away by the tide.