What it’s actually like to be me

This piece is probably going to be long and heavy because I’m going to detail exactly what it’s actually like to be me and all the things that I am reliant on others for that might not be particularly obvious from just reading my tweets. Here we go.

I was born almost three months early and was diagnosed with cerebral palsy as a result. For any Star Trek fans out there, I was the equivalent of the Enterprise B leaving space dock before Tuesday. It has affected me in a number of ways: most significantly, my legs are completely non-functional and don’t really serve any purpose other than being a nice decorative feature (although my left one does provide a suitable holding place for my piss bag – more on that later).

I got my first wheelchair as soon as I was too big to fit into a pushchair. I can’t stand at all, and cannot get in or out of bed, or my wheelchair, without another person assisting me – although assist is probably the wrong word, since the entirety of the effort for such transfers is solely placed on the other person involved.

My hands are not fully functional; only the first two fingers of each hand and my thumbs are able to move independently of my other fingers, so fine motor tasks are pretty much a no-go for me. Although I can feed myself in terms of actually putting the stuff in my mouth, I can’t do any of the preparation. With the state of my hands, it would not be safe for me to do anything with hot objects and I can’t use knives, so I rely on other people to prepare and cut up my food for me. Additionally, it has to be brought to me as I can’t carry a full plate myself, both because of the heat, and it would simply be too heavy for me to lift and I would likely spill the food, which as I’m sure you can all understand, would not be very good.

Furthermore, I can’t dress myself at all, nor can I use the shower independently, needing somebody else to wash and dry my entire body. Continuing on this theme, the difficulties I have with my hands mean that I cannot hold a toothbrush properly at a suitable angle to clean my own teeth, meaning Mam has to do that for me as well. She has done this for my whole life, and it is very likely that she will have to until she physically can’t anymore.

Now, on the subject of toilet needs, as many followers know, I have a bag on my leg which deals with piss, but again Mam has to put this on for me every morning. If it malfunctions leading to soaking trousers and often a very wet seat cover as well, both need to be changed as a matter of urgency, which again requires me to be lifted onto my bed. Even though I completely trust my parents, this is still embarrassing as a 29 year old man!

Moreover, when it comes to the other, I need to be lifted onto my special toilet and shower chair then, after the event, somebody has to wipe and clean up for me because I simply can’t do it. Again, my parents and I are completely okay with doing this, but it’s not a task that I would be comfortable allowing many other people to perform for me, as I’m sure you can understand. I need to be able to trust the person implicitly before I would let them anywhere near there, and I really do worry what will happen when M and D can no longer manage.

Additionally, my balance is practically non-existent, meaning that I can’t sit safely on just any chair, as I would risk either falling off or sliding forward. Also, I find most chairs exceedingly painful to sit on after a while. In fact, my wheelchair is custom-moulded to my body shape as I have found that that is the ONLY way that I can sit in any comfort for a significant period of time.

Indeed, some of you may know that I get significant pain from my manual chair which we use for visiting places not conducive to my big, bulky electric one. I will say it’s always such a relief to get back in my comfy chair whenever we return from going abroad.

Another thing is that I can’t leave the house on my own; it’s not safe for me to attempt to cross roads or even just go along the pavement without guidance from another person. Added to this, as part of my disability I have absolutely no directional memory, so I would never be able to find my way home again anyway.

So you might wonder why I am telling you all this deeply personal information.

Well it’s because the government have renewed their attacks on disabled people, by suggesting that somehow we could all be fit for work if we just worked from home. That is bollocks for the reasons I’ve just outlined, and also because such bountiful WFH(work from home) jobs appear to be a mythical figment of Mel Stride’s imagination. They simply don’t exist, most jobs listed on the Department of Work and Pensions website as WFH actually relate to either working in somebody else’s home or in care settings. I am not exactly sure how this helps disabled people.

Also, I’ve heard many people suggest that disabled people could work from home by being self-employed. This completely ignores the fact that it is incredibly difficult to be self-employed and financially stable in the early days when you have no financial security to fall back on and that one can’t just ‘become self-employed’. You first need to have an idea of what you want to do and be physically and mentally able to do it, which for many disabled people would likely be impossible.

The government seems to think that it can legislate away the practical realities of people’s lives. Simply declaring people ‘fit for work” does not actually mean that people will be. It just means that people will be newly subject to sanctions if they don’t comply with demands that are impossible for them to meet. This will severely endanger lives if it is allowed to happen.

The government does not seem to understand that there are some conditions that simply cannot be ‘cured’ by whatever treatment they may suggest. Nothing is going to help me ‘manage my condition’ any more than I already do; I was born like this and I will die like this.

I just wanted to write this thread to show that life as a disabled person isn’t in any way ‘easy’. As I’ve mentioned, I’m fully reliant on my amazing parents for most basic things, and the DWP have previously accepted that I can’t work, but it seems that they now believe everyone can, which is total bollocks.

I shouldn’t have to write a piece like this, but I feel the need to vent, because I’m under attack by the very people who are supposed to protect me and other disabled people: namely our heartless Tory government.

I’ll keep fighting! 

No doubt Conservative politicians would answer that their potential measures are not targeting people like Joe. But the fact is that injustices and cruelties are meted out daily. The language bandied about by ministers right now suggests that this will only get worse. Please write to your MP if you feel as outraged and disgusted as we do at the threatened measures. As Joe explains, he cannot just be ‘cured.’ Ed