Ability Covid-19 Inequality Neoliberalism Power socialism Storytelling Uncategorized

no matter how golden a cage is, it’s still a cage: a personal story of living with disability under Covid-19

By Mike Duffy

Hello, 🙂 

And thank you 

I  don’t know where to start, so at the beginning, I guess,.

I am a 15? Year old boy trapped in a 55 year old body that is determined to break down as fast as possible, I’m sure a lot of us recognise the feeling..I’m disabled physically, with CMT, type 1a,[1] which probably means nothing, to most people, its modern name is hereditary motor sensory neuropathy, a slow progressive disease which destroys the nerve endings all over my body, starting at the toes as a young child, working its way ever upwards and inwards, legs, fingers and hands, imagine Gemini man..spread out, and its working inwards ..what it means is I drop things, trip up, fall over a lot, can’t walk far at all, no sense of balance, nor can I feel pain in my fingers toes, and other parts, which means I can hurt myself with out knowing..

The result was I had to stop working after my consultant said I had to.  Then I entered the world I live in now, controlled by the DWP,[2]

I have no choice, but to claim benefits, I can’t work. who would hire me..my consultant says I will kill someone, so I stopped.. but the DWP, well, I’m what they call *fits the profile *

i.e., I was/am a building tradesman…a heating engineer,  so in the DWP eyes, I’m most likely working ,and claiming…even though the DWP own statistics show 0.01 % fraud on ESA/disability benefits[3]. So I have to prove that I’m ill enough, to get benefits, which as an outside looking in, seems ok?, until I point out that they ask me to prove I’m ill every other year, as *I might get better*,

The clue is in the name of the disease 

Heredity motor sensory neuropathy, its slow, progressive, and no cure..today is the very best I’m going to be, for the rest of my life, tomorrow I will be a bit more ill..

I have to explain my toilet problems with complete strangers, my eating problems, my problems getting dressed..its disturbing, humiliating, and if I refuse, or they don’t like my answers, I can lose all my money, benefits.. yes, the £110 per week ESA..so I’ve learnt to dread brown envelopes,…because typically the DWP, and there friends ATOS[4],  use them. That was till they decided to ease the mental burden, by alternative white envelopes so now I’m just terrified by the postal service, that, is how I used to be but now, thanks to covid 19,. Its changed..

January? we heard on the BBC news of a strange outbreak in China, I looked further into it, and realised it was going to get a lot worse than SARS.  Most people around me were blissfully ignorant of SARS, let alone the implications of this covid 19 would have,

But I realised this was not going to burn its self out, and sooner or later it would affect us all. 

I used to be able to drive my mobility car, to see friends, family, socialise with them go enjoy my hobby (model trains) but all this stopped when I received a letter, and a email..

From Matt Hancock,[5] stating that I had been identified as extremely vulnerable, and I needed to self isolate, for a short period. 

Well, that was just funny as fuck..for 15 years I have to prove I’m ill..describe my most personal information and in great detail, to get my benefits, yet suddenly the government knows I’m extremely vulnerable   wtf.. it really was one of those moments. 

I went from being very mobile(car), independent, as much as I could, outgoing, and dare I say it. Talkative. I’m actually quite shy..but like most shy folk we just talk to cover it up..well that changed.. I couldn’t go out. 12 weeks, I couldn’t go to a shop and decided what to eat, it was literally taken away from me. I can not see my friends, I am reliant on my wife, to do the shopping, to go to the chemist, to go do things.  I’m excluded from society, by my disability…already..  and now , what little access is took away from me, for my protection, but its only 12 weeks..

Initially,  ..no matter how golden a cage is, its still a cage..my mental health has deteriorated, I wasn’t depressed, as far as I know, any more than anyone, I was happy, having just proven to the DWP, again, that I was indeed ill..and had received a letter confirming that they were happy to let me continue claiming benefits for a set review period of 18 months.. so I thought..12 month’s, with out shuddering when I see a postman..but now.

I know I’m depressed, no joy in a cage, I can’t see my friends, family, I don’t get any enjoyment from my hobbies, days, have turned in to weeks of self isolation, in to months, and if you can understand the problem, you know life will not get any better for a long time, my wife works from home, after long arguments with her employer,  she is a agile support worker, she pre covid worked either from home, via a laptop and monitor, or called into work  once, or twice a week,  to do paperwork, her bosses, put her in the position of having to decide between her job, or protecting her family..thank god for her union…extra stress when life is challenging enough.. as we look after our son..he has autism, ADHD,..he too is vulnerable, due to his ethnicity,.

I sometimes think it could be worse, I could be short, ugly, and sarcastic…O…

So mentally its been very challenging,  living on top of each other, trying not to stress about it, when you know how bad it will be for you, my son, works in a intensive care ward at a large hospital,  he has CMT too, along with his sister* yes I’m lucky like that, its hereditary, 50/50 if you can pass it on..I am that lucky *

And he’s seen 1st hand how bad it is. Dad..stay indoors and don’t see anyone. I’ve not seen him in months, as he caught covid 19 on his ward, as they were not testing new patients, straight away…he’s recovered now, but keeps away..for my sake, I still worry about him, 

The news of a vaccine is great, but it’s not a cure, it’s looking likely to be a seasonal thing.

Life will not go back, we are in a strange new world, and I’m not sure its better, or worse, the DWP don’t seem interested in me, I guess because they are busy elsewhere, but I know they can and will be back..the virus isn’t personal,  it just wants to grow by killing us..

Will we let it? OR will we kill ourselves, I don’t know, now I just try to make each day count for something. Yesterday, I made an effort to make a part for a train..it was terrible, but I tried, to day, I tried to write this..it’s terrible, but I tried..that’s the thing . We have to keep trying, fighting a system or a virus, they both try to kill us, but one IS personal, the other not.

Mike

@Lazygrangebay

Hello, I am a 55 year old human being doing the best I can , in a dysfunctional body in a dysfuntinal world , I think my political leaning are left of labour, ie , a socialist, I blame my English teacher, an Irishman, who taught me to think, in the French classrooms, I’m trying to be a moral man In a immoral world.


[1] Charcot-Marie-Tooth disease type 1A

[2] Department of Work and Pensions

[3] Employment and Support Allowance

[4] ATOS are contracted to complete work compatibility assessments.

[5] Matt Hancock is the current Health Secretary.

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