We went to a festival on the weekend, as per my last entry. Readers of this diary may recall my second date with Wendy last year and her cycling 30 miles, mostly in the dark and without decent lights, because we had a public transport disaster. Well it would have been a bit presumptuous of me to have booked a hotel room for our second date…

Anyway a year on and a hotel was this time booked, promising an easier day. But wait… nothing/ zilch / zero is ever easy anymore and the festival organisers had very (in ) conveniently altered the wheelchair access set up completely and unrecognisably.

I did write to them today and enclose an extract –

‘

This weekend I made the mistake of going to the Pennfest festival. Last year I had gone and it went smoothly. I am paralysed and in a wheelchair. Last year, from the entrance to the wheelchair platform was probably 100 metres, and obviously the same in reverse to leave. 

This year I was very surprised to find myself directed, in my wheelchair, down a grassy slope, right along a muddy path, up a hill through a forest, over an impassable speed ramp, and then a further 100 metres through a field. This had led me only to the entrance, at which I was vaguely directed to the first aid tent, where I might collect a pass enabling me to access a disabled toilet. The first aid tent was 150 metres up a muddy slope, and not at all easy to find, and the platform then across another field of grass and mud. 

I had my girlfriend with me for the second leg, and she pushed me all the way. Prior to that I begged assistance from passers by.

When we left, I was not surprised to hear I had to do the same trip in reverse to exit the festival. 

Whoever is responsible for your disability awareness and equality policy should be disciplined immediately for his / her complete failure to have given any consideration at all to the difficulties experienced by wheelchair users on anything other than level and smooth surfaces. Crossing a road is daunting, in good conditions ; travelling through a forest in the mud is altogether in a different league. 

I read your blurb about asking staff for help, but words on paper are all that they are. The reality is that your staff didn’t want to know, and actually didn’t know much at all, because your training of them is inadequate/ absent. On the way out I wasn’t allowed to go on the plastic track as this was apparently for lorries. Instead I was told to push along a further 300 metres of muddy path adjacent to the flat plastic track. Needless to say I ignored that last instruction, having had enough maltreatment already. 

Amazingly there was more to come, as waiting for the shuttle bus was next. There was no provision for making it accessible through the zig zag of lanes, so I chose to follow a different route to the front, but only because I am confident enough to contravene discriminatory regulations. 

Your approach to disability is shameful. 

What are you going to do about it?

Russ Dawkins

Having said all that, you take the positives and smile, if you are that sort…. and whilst I wouldn’t go again, I’ll look back at seeing Goldie Lookin Chain, Scouting for Girls, Happy Mondays and Craig David with good memories.

We are at a music festival as I write this. Yes, I am on the platform for the less physically fortunate. Some adjacent to me look and act almost normally, and some are far worse off than I. There’s a man next to me in a wheelchair who has, I think, some sort of progressive condition, whereby he is very, very physically disabled. He can’t control any part of him as far as I can tell. He is, therefore, TOTALLY reliant on his companion. I’ve no doubt that she describes herself as his ‘ carer’ without any sense at all of what the word means, or as it’s defined in the dictionary. He is spasming in his chair, and has done for the 2 hours we’ve been here, whilst she sits on the edge of the platform, legs dangling off, on her phone, with her earphones in, in front of him without keeping an eye on him. Every 30 minutes or so she glances around at him. If he started to choke, or even passed away, she’d not notice, not seeing him or being able to hear him because of her earphones in.

Wendy has several times gone over to him and moved a leg that has fallen off his footrest, or adjusted his clothing to make it more comfortable for him. She evidently cares more about him than his ‘ carer ‘. It’s scandalous that she’s paid to do a job and she really can’t be bothered to at all.

At one time he was probably ‘ normal ‘ at one time, and this is how it is now for him, here with a stranger that never knew him when he was unaffected, and doesn’t care either. To her, he’s just some disabled bloke.

For sure a similar destiny would have awaited me had I not surprised the doctors and turned out not to be brain damaged severely. The initial interest from friends always dies away within a few years ( or less ) and then you are left with one or 2 occasional visitors and the odd family member who fits in a semi regular visit to the ‘ Care Home’ that you essentially go to exist in. This poor guy may well have clear thoughts that he just can’t express in any way, and may well just want it all to end but can’t make that happen.

Take it from me ( and today is 2 years since I very nearly succeeded ) suicide IS painless ( or can be ) and it is easy once you get your head straight around it. For me it was extremely straightforward, no dread or nerves or regrets, just another task to finish. I don’t regret it at all. At the time it was the right thing to do, and I don’t do prevarication.

This week has been unusual in that I’ve seen my family. My parents came on Tuesday, and stayed the night for the first time, and then my older brother dropped in from the US of A and spent Wednesday evening and last night with me ( and last night met the lovely Wendy )

My parents were on top form, and it was just brilliant to see my brother. Funny isn’t it with siblings – you still think of them like when you were all kids, but now you really aren’t, and actually have kids yourself that are almost not kids anymore. In reality you are very much grown up. My brother has become a very wise fella, helped in that by his career having led him to meet an awful lot of people, and his insights were most helpful about a lot of things, enabling me to look at things from a different perspective, ultimately to help remove certain ways of thinking from my mind. There are things that have bothered me for years that now I think won’t in the same way. Sometimes you want things that you are unlikely to get, and the more difficult it seems to obtain them the more you want them, losing sight of what it was that you would actually have achieved by wanting them in the first place. Looking again at certain things now that I’ve felt were absent and important to me, I realise that in fact they are far far less important than I thought they were, and if I’d had them I wouldn’t really have been better off than I already am.

He and Wendy got on really well, which of course was expected, and he said how special she was, to me. She was laughing as she and I went home ( from a restaurant! ) and said ‘ he’s like a more sophisticated version of you, isn’t he?’

Bloody hell, what a thing to say! Even more polished than me?! He must be bloody gleaming, right? I’m surprised you don’t have to wear sunglasses to even look at him…..

As he wasn’t always as he has become, it does prove one thing.

You really can polish a turd.

Yesterday I found out what it is they are doing to Brentford, as they are pretty much knocking the whole town centre down and starting again. It’s going to be very different here in about 3 years, and by 2027 it’ll be completely unrecognisable. By then I’ll be almost 30…. but almost certainly not yet a grown up….

You know I had a frontal lobe injury in my accident. That means that I’m almost certainly less inhibited than before. I’ve often no idea that things I say that I think are constructive or helpful ( and definitely not rude ) can apparently wind up ( some ) sensitive people.

Nobody complained before my injury about me, so if I’ve always been rude then why did people accept it before? And if you put up with it before, but don’t now, then what has changed? Either you have, or it’s something about being offended by a chap in a wheelchair presumably ( which obviously is very discriminatory ).

I’ve just been ‘ threatened ‘ with banning from the local residents Facebook group! My crime this time? Someone that I actually know posted that they ‘ needed ‘ a cleaner. Various people piped up with suggestions, ranging from £12-15 per hour ( blimey that’s good pay for doing something as easy as hoovering! ) As I do all the cleaning that I’m able to myself ( yes, there’s a fair bit that I simply cannot do ) I wrote ‘ you could always just do your own cleaning?’ As the person isn’t in any way physically disabled, and isn’t that well off either, I considered that a logical suggestion.

The reaction? ‘ you’ll have to be removed from the group if you make ‘ nasty’ comments ‘.

Nasty? Really? If I’d added ‘ you lazy slut’ or something, then yes, that would have been ‘ nasty’ but saying someone can do something themselves surely can’t even be unpleasant, rather it’s surely ‘ empowering ‘ or something?

I get regularly bewildered by the reactions of people, since my injury. I didn’t so regularly before, so I guess my thought process has been altered by my bang on my head. That’s logical, isn’t it?

The lady banning me is called Philippa. She has actually been reasonably helpful to me here and there before now, but I don’t think she will be in future? As I actually belong to the Residents Committee, and so does she, it might be a bit uncomfortable ( for her at least ) in future, in the meetings?

I think she may be causing more problems for herself than she is solving? Oh well, never mind, I’ll keep smiling.

And if anyone wants a cleaning job for £15 an hour ( that’s double the minimum wage of most that work in shops and in hotels etc ) then please get in touch and I’ll pass it onto the people round here who have too much money / are far too busy doing yoga or something, to run their own hoover round.

And to celebrate our 1 year together we went to the highest point in London.

The Shard viewing gallery is for me something that you could never possibly get enough of Not sure if everyone agrees with that, but hey.

For Wendy and I it’s a year today since we first met. I did know she was a person of compassion, amongst many other qualities, when I first met her, and even in the texts and phone calls. That’s not to say that everyone who’s disabled has to have a compassionate partner, but it certainly helps. Empathy and understanding ( as best you can at least ) goes a long way.

The trouble with being disabled and being the ( willing, by choice) partner of a disabled person is that it’s not ‘ merely ‘ a state of mind, it’s a state of reality – that disabled person needs help to even exist. It’s not just a case of hanging out or doing stuff with them in public, it’s all the behind the scenes stuff that is obligatory too. I have no choice but to need help – it’s not optional to give me help, it’s actually totally necessary- unless I opt ( or it’s dictated to me ) that I just stay indoors/ in bed. Many in my situation just accept the imposition of restricted life. What I do is to rebel against that. I’ve never liked being dictated to or told what to do, and I am still the same. By the same token I don’t dictate to anyone else. Wendy has zero ‘ pressure ‘ from me to do anything at all. All that she does is freely given. That she opts to do so much is what makes her truly special.

I’ve seen so many people that seem almost devoid of the C word altogether, not noticing pre injury but now seeing clearly. Some of those very close to me previously, have little, and are just memories. It does take the shine off an experience which seemed good at the time, but in retrospect was ‘ enjoyed ‘ with someone that proved themselves only a fair weather friend. And lots of those about for sure. You don’t find out til the crap crashes into the fan. Does it make you regret having spent time with them at all? No, not really, not completely, but it’s all tainted quite markedly. The closer was the relationship, the more tarnished is the memory.

A lot of people think that you shouldn’t feel sorry for someone that has a disabling condition. That’s odd to me. I’d have certainly felt sorry for anyone that lost a leg ( as a childhood friend did ), had a brain injury ( yes, know a couple ) or had cancer ( yes, know lots and lots ). Of course you feel sorry for them. If you don’t, then what do you feel? I mean, what’s left? Indifference? Pleasure? My mind boggles to be honest.

It’s hard though to just be so iron willed that you can just forget people, but I imagine that’s because I am one who has compassion. If I didn’t, then probably I could? I’m being told repeatedly by the kindest people I know that actually the best thing to do is to cut ties, for my own sake, so that’s the plan.

Happy anniversary Wendy. You are indeed one of the best people, for sure. Wendy definitely loves me more than anybody ever has ( and I actually mean anybody at all, ever, including everyone I know for whatever reason) , and that isn’t in doubt. I ought take solace in that? If someone so ‘ good’ can feel that way about me, then I must be alright, right?

Tonight we saw Lewis Copaldi. I have to be honest when I say I knew absolutely sod all about him ( he’s a singer ).
When this bloke came onto the stage, at first I thought it was a fat roady just checking the microphone was working, and then was surprised he started singing.

He looked like a young Boris Johnson. Chubby with quite a lot of hair.
When women started throwing their underwear he was very amusing about it.
And I’m sure his drummer was Ricky Tomlinson, off The Royle Family.

In fact he turned out to be very funny – a piss taking, and self deprecating Scottish bloke of 22.
At one point he introduced ‘ his Bald fucker manager, Scott, who had just had a hair transplant at 28. He was sort of nice about him and ‘ then said ‘ Fuck off now ‘

That boy can sing though, and clearly can’t believe he’s headlining big crowds, probably more amazed that those crowds include posh ones in Kew Gardens.

I was of course on the human scrap heap that is the wheelchair/ disabled platform. It’s not a great place to end up, that’s for sure. I don’t recommend it as destiny.

Most regular people avert their eyes as they pass by, I notice, which I at least do understand. It’s what ‘ polite people ‘ do – not look for fear of staring at the funny people ‘ In Wales when I grew up, you’d have had kids pulling faces at us, like they used to at the Sunshine Bus, as it was called, even when the name was changed to something else.

I confess I find that a little amusing still, even now I’m on the wrong side of the glass.

Lewis himself 10/10. I had no expectation but am really impressed.

Being disabled 0/10.

I bumped into a lovely lady yesterday that once taught one of my children. I met with her 2 years ago and she told me that she had cancer ( at 36 ) and that it was serious ( as in terminal ). She was however incredibly optimistic and hopeful that she’d get through it.

To even see her alive yesterday was a surprise, and looking so well even more so. She told me that some months ago she was given 2 weeks to live, and thought that was obviously that. But after radical treatment ( medicine I mean ) in Germany, that isn’t allowed in this country, she’s alive and definitely kicking.

There is so much spinal stuff that we paralysed would volunteer for, but it’s not ‘ approved’ so only rats get it.i couldn’t give a fuck about side effects – I’d just take a bit of recovery!

She asked after my kids. I explained that the one she taught isn’t in my life at all sadly, and the other is barely. Who’d have thought it? She knows what a doting dad I was, and still would be just given a chance.

A friend of mine from schooldays wrote to me recently. We played county standard ( Gwent schools ) together for 2 years. He told me about his friend’s son ( 19 ) who had fallen asleep ( alcohol I’m sure ) on a sea wall, and fallen off, 15 feet onto his head. The boy had it all – popular, good looking, sporty, bright.

I wrote to the lad’s Dad. I’ll hopefully go to see them both in a london hospital soon.

When I last wrote to the Dad, I said that I wouldn’t be able to make it to the hospital in a morning, ‘ such being disabled life ‘.

It occurred to me actually just now that perhaps I presented him with that word for the first time. Until now, and thus far it’ll have been all optimism and hope ( unrealistically probably ) that the lad will be fine again, having recovered from his currently severe injuries. Lots of people will have been saying and thinking ‘ we hope he’s going to be alright ‘

What ‘ alright ‘ means is ‘ is he going to be normal, as in just like the rest of us?’ As in not, you know, damaged in some way… like disabled or something ‘

There’s an understandable optimism and desperation for a full and miraculous recovery. But all too often that doesn’t happen and it’s another life ruined, another person disabled… and no longer, well, normal. The world is made for normal, obviously, not abnormal. It wouldn’t make sense to make it for abnormal if you think about it… but thankfully now and for we abnormals it’s changing so that we can still do stuff with the normal people.

It’s the horrible reality but it’s not quite as horrible as it relatively recently was. We’ll always be stared at/ ignored/ pitied, and that’s understandable, but believe me it isn’t great.

And the skin cancer check up again tomorrow, as more dodgy looking stuff on me.

Don’t they know I won’t die?! I’m immortal- impossible to kill so far!

Let’s see this time 💥