Being disabled in 21st Century Tory Britain

Just read this in Bristol Live, kinda says it all. Not so much about the individual case of a 70 odd year old filmed delivering catalogues but of how society expects the disabled to be:

‘A “manipulative” man who said he was disabled and claimed almost £90,000 in benefits has been jailed after he was filmed living an

active life.’

So in effect being disabled means you cannot be active, so if on better days you are then you are a criminal. I find that beyond evil.

I personally never ever have a pain free day. Every single day I awake in pain. I have constant peripheral pain in my arms and legs, my feet and hands, my torso and my stomach. On some days I manage that pain, and that’s when folk may see me for an hour and rarely sometimes a little more.

I also am in constant danger of collapse or soiling myself through the effects of a crohns flare up, I have to manage that when trying to plan anything.

I have brain fog meaning I can become confused or forgetful due to my illnesses so that along with the depression and anxiety I constantly battle means I am also socially anxious and nervous. Often avoiding friends and situations where I am likely to be expected to personally interact with others.

Chest pain can cause me to double up and again some of that is anxiety and stress of social situation or trying too hard to support others in my family and the wider society, but also due to heart issues and the SVT that seems to be getting worse. My blood pressure is usually in stage 2 hypertension as well as my pulse anywhere from 95 to at times over 200bpm.

I am controlled by the meds I take from the heavy duty immune suppression tablets meaning I have to avoid infections including the common cold, to the extreme pain killers, and have to juggle the pain meds to avoid addiction and dependency.

I have had to and continue to have to undergo truly embarrassing and at times painful procedures from cameras to having to have minor but life changing surgery such as circumcision.

The constant exhaustion means I cannot plan, cannot join a club or have any organised hobby. I cannot commit to anything at all. When I say exhaustion it’s not just feeling a bit tired, it’s your body reacting as if you have ran three marathons consecutively but not moved from your chair.

Each day I fight to find reason to continue on this path, and some days its a real uncertainty that I will. Of course the Prime Minister Boris Johnson keeps making reference how for mental health issues work is the answer, as in the motto that National Socialist Germany put over the gates of concentration and death camps eradicating the disabled, “work makes you free”.

I know people play the system, but on a day I manage my pain, my mood, my crohns and my heart is not playing up too much (not a good day as I never ever have a good day just a manageable one, unlike today) people will look at me and question how I am disabled. They will likely assume I am fit despite my slow speed and at times confusion.

I am fiercely independentas have little pride left, and will not allow others to undertake my chores within the home nor do my shopping.

They will never see me in my wheel chair because on those days I refuse to leave the house and often crawl from room to room. Very rarely on my crutches and only occasionally when I need my stick. Why? Because whenever I have allowed others to see my vulnerability I have been physically attacked. 5 times that has happened in public places and ond once in my own home. and not once have the police investigated or tried to keep me safe.

So now I hide away if I look ill, or I hide the pain. I dope myself up to undertake basic tasks out of the house but in the home for fear of addiction I just try to grin and bear it until the pain levels become too much or the exhaustion combined with the pain starts to drag me into temptation of taking everything at once. There may be a day that happens and it will not be for attention, it will be through the daily despair I feel.

That’s the life many people will never see of me, and I am but one person, there are millions with crohnic illness and invisible disabilities in the UK and each one of us is living in constant terror that we will either be attacked or arrested for being seen as too ill and therefore vulnerable fair game to this bigoted society, or too well to be disabled or ill therefore a criminal not entitled to the little support we reciev.

Every single day we have to decide if we dare let others see us, or even if we dare show our pain or very occasional joy.

My life is no harder or easier than that of many other disabled folk. Some may mirror mine, some will have different issues but we all fear each day, we fear the pain, the exhaustion, the embarrassment, the anxiety, the confusion that are results of our health conditions but also the threats, aggression, harassment and hatred others within our society focus on us and worse the cruelty our own government and the people that carry out their orders subject us to.

That is what such badly written articles in the press sustain and promote in a society already fuelled by suspicion and hate.

If you are not sick, disabled, ill or vulnerable I pray you never will be. For I would not wish this life upon anyone.

Jonesy