Month: Sep 2023

Validity or invalidity?
Every day this government and its minions, the vile beaurocratic drones of the very un-civil and cruel services destroy lives a bit more, mine included. My tipping point is beyond close.

When people can no longer live their lives due to their wicked immoral behaviour, do we just lay down and die? Or will there be a point where some of us fight back in kind?
Why should these disgusting excuses for politicians, for civil servants and public employees get to dictate whose life has value and whose does not.
It’s not just them though is it? We live in a society where suddenly it is acceptable to use people’s life challenges against them. To see their illness as weakness, and their inability as laziness or even criminal.

Why should people with disability and chronic ill health feel so criminalised and completely worthless because the media, the government and sadly their peers, including so called friends and even family identify them as such?
I am a chronically ill disabled person who tries to identify as a valid human. No more and no less.

On my good days, or rather the few manageable days, not actually good, not ever pain free, not remotely easy, I may go out, try to behave and act ‘normal’, maybe even to onlookers seem like I am almost happy, possibly committing the offence of portraying someone who on these rare occasions is guilty of presenting as enjoying life.

Sadly though there are too many people who know just how ill I am, some of these people that have even very recently tried to discredit me, by reporting to officialdom that I have dared to leave my house, that I have been seen smiling, that I have interacted with a few other folk face to face, that I have gone beyond the unwritten yet imposed barrier that should be recognised as my, imposed by their judgement, prison.

These people sadly were once counted as my friends, but then when we had a disagreement, at that point it seems, they showed their true colours.

They are people who are fully aware of my daily challenges, they know beyond doubt that I live in constant pain, that I cannot focus, often even to the point of holding a conversation without losing my point, they know I have had two recent and severe heart attacks, they know I had angina before that, they know I have uncontrolled diabetes, that i try to keep some control off through my dietary restrictions but more so insulin, they have seen the effects upon me of a hypo and know this same diabetes killed my young brother. They know I have crohns disease which can cause me to soil myself, means i at times need pads but also means i am on medication that removes any immune system I may have, that i have had to subject my body to chemotherapy drugs, and live with the detrimental effects of those.
These are people who know I have limited mobility, that I am physically unable to undertake the most basic of tasks. These are folk that also know I have neuropathy – nerve damage due to my diabetes, I have fibromyalgia and even say they understand this because they too or their partners suffer from it.
They are fully aware I have PTSD from holding my dead kid brother (he was 18yrs my junior and like a son).
They say they know and supposedly share the feelings of hopelessness, loss of reason and all too often the very real wish not to be alive any longer, that the all too often killer, depression brings with it.

These are people who know a lot about me, they are fully aware that illness stole my job, career my role, they often stated (when they needed something), how they recognised how hard things are.
They said they realised how illness steals your relationships, especially with family. They know I not only lost my reason to be here, but in doing so, I lost a very well paid career, had to give up a comfortable life style to survive on virtually nothing. To have my life dictated by what those nameless office workers decide I should be allowed to do, when I am not lay immobile in my home, unable to move or even reach the toilet.

These are people, one or two, who used to even call me “brother”, as did I them, a title you will hopefully realise I see as extremely important, and not throw away, yet, decided because I saw them for who they truly are, (one a supposed ‘man’ who actually bullies women, not his own partner as far as i am aware, because he is not strong enough to face other men even ones as weak as myself, he has issues with, ) to try to get me in some form of trouble with the government and their agencies by fabrication and lies.
They believe they have a right to behave like that to anyone more vulnerable than them, because they are told every day they are, through the press, media and so many TV programmes.

These people are not one offs, they are not an isolated example, in the old days, as in prior to the 21st Century, these turncoat betrayers would be seen as the lowest of the low. They would be the ones isolated by entire communities, their behaviour would not be tolerated, they would be seen as the low life vile bullying immoral scum they are, yet now people though observing their behaviour, stand by without comment or action. It seems the morality of society has changed.

We now live in a world where the weak and vulnerable are not only easy but valid targets. Where the ill and disabled are seen as useless, or worse as frauds.

My message to people like these is please feel free to live my life, take my pain, accept that as you are, as described in your medical files frail and feeble. Please take on the role of a person without hope, of someone relying on others every day to survive.

I once spent everyday supporting people, protecting the most vulnerable, investigating the most vile, from those who would physically, emotionally or sexually abuse people, even having to interact with those who are seen by most moral folk as repugnant scum, to ensure the safety of children, of families, of women and even men by identifying their abusers and finding ways, through the courts, through law, through signposting and even through physically going, giving them the means to transport them, to assist them to escape, helping them disappear even during the dead of the night to ensure they are taken to a place of safety where their lives would be allowed to continue rather than them being murdered, raped or beaten through cultural traditions or laws.

That was my role, that along with my family was my reason, my self worth my value, not ever anything material.
Before that I drove buses, transporting people to school, work, shopping, holidays or too see friends or family.
I have dressed as a dustbin for Keep Britain Tidy, I have worked in a sweat shop in Manchester, I even started out as a care assistant at 16 looking after folk that could no longer look after themselves.
Throughout my life I have tried to matter, to make a difference. At times I hope I may have changed lives, even saved a few, whether as a social worker ,a friend or through Volunteer Riders UK. I don’t know whether I have though, because how can you measure that?
Despite trying to live a moral and kind life, to walk a path that hurts no one, I as so many others am subjected to this oppressive bullying by people who it seems feel they have a right to destroy the lives of others.
What these people need to understand though, is that no matter how much damage they do, they will never take away as much as what living with chronic illness does.
Today I was supposed to be going away with the support of my closest and best friend, Kate, who also provides me with care, compassion and focus. We both have had a challenging few years in our own ways, but she has continued to make sure I get to live a little when I can.
My anxiety, however, has teamed up with my physical issues and left me unable to go. One of the last times I went away, my brother died. The guilt I carried for not being here before it was too late is immense and consumes me every single day.
So instead of going away, I am sat writing this on my sofa, having just had a hypo because I failed to eat.
Now I haven’t written this as a woe is me. I wrote this because it is scraping the surface of my experience of life as a chronically ill man in this country, a country where all disabled people are threatened and vilified by so many , from officialdom to friends, to even family.
I can only write about my own experiences, and sadly it is one of being subjected to bullying and discrimination daily. Often from those you once trusted.
I don’t want hugs, I don’t want sympathy or favour. I want you to read this brief extract and if you too are disabled, realise you are not alone, and if you are not ill maybe consider that those of us who are,may not be the waste of air you see.
Jonesy