Disability

Super Easy Barely an Inconvenience

I don’t care about your opinion. I do feel the need to voice mine. My blog my rules! I don’t need or want you to agree with me I don’t seek your approval oh great and mighty internet strangers. This is not about my vanity as a two bit wannabe writer or your ego as you think your opinion will finally remove the scales from my eyes and I’ll see the light and it’ll be you what dun it.

COVID 19 took us all by surprise. Governments, Priests, the average Joe in the street. I thought “It’ll stay mostly in China, poor bastards. Few cases here, but we’ll cope and happy days” I was clearly wrong. Millions dead worldwide, lockdown. Phrases like the new normal being born, extroverts invading a introverts space, not liking it, chewing someone’s leg off to get out, go do, go see.

I on the other hand, have been extremely cautious. I do not want to be ill and risk Hospital. You see I have a disability the effects my balance. So shitting in a bedpan is something I long to avoid. In addition to that, my parents are old now and I wouldn’t want to risk them getting ill. All sensible reasoning so far right?

Anyway few months along, and people are now required to wear a face mask in shops. At the moment infection rates are low, and everyone is trying to restore normality. Meeting friends, going to the pub. Good stuff.

Over the past few weeks I have seen objection videos to the masks pop up. Saying that masks inhibit oxygen or they are a way to control us, take away our individuality and freedom to communicate. I have a question to the people making those. Why would someone want to do that? Yes to control, but why? It’s a big conspiracy as normal but who can gain from it ( whatever it is)

I have another question for people sharing. Why? I mean you obviously agree with the points made. Maybe you have issues with communication, the deaf community must have an issue with lip reading right now. But I know a deaf girl (she doesn’t have to listen to me talk, its a blessing she says) she communicates via text or just writing on her tablet round Tesco’s. Because her boyfriend doesn’t sign and she can’t lip read because of his mask. (Which incidentally says “My girlfriend doesn’t listen to me” on it in big red letters. Funny fuckers) And that begins my point…

As a disabled person, my whole existence is filled with inconvenience. I have to sit exactly right as I write this or my back will spasm, I would love extremely acrobatic and energetic sex, however my physical movements are limited, I love long walks in the rain (50 ft and I have to rest unless I have fallen down), real ale in pint glasses I can’t carry. Do I complain.. hell yeah. Do I stop trying to do what I want to do, do I let the inconvenience be the focus. No. Round every inconvenience is a way through a way out.

Your inconvenience at the moment is wearing a mask. It doesn’t impact your life in any meaningful way and here’s hoping this will be a distant memory in 6 months. Your way out will be sorted for you and this will just be “remember when we all wore those masks..” story. There are ways and means to do the things you love without endangering yourself or those you care about. If you can’t wear a mask, stay out of the shops.

I don’t care if you agree, I don’t care if “there is this scientific paper…” (check your sources) wear your tinfoil hat if you are that important that they are coming to get you. Wear a mask and be socially distanced. Be an example to your children, ensure they are safe. Argue about it later, because it is saving lives today that is all that matters.

Poem: Descent

I look in the reflection and try and find me there,
All I see looking back is a strangers vacant stare,
It’s almost like he knew me,
Back when long ago,
My legs were standing straight, well as straight as they could go.
He looks on disapproving at the husk I have become,
How the tyre has grown around my waist were once there was none,
He looks out from inside,
With energy, some ambition,
But I know with any action, now follows a long long intermission.
Frustration. The worst pain to bear.
As my body is ever failing.
That forever there.

SLNSW 13858 Ornamental mirrors for catalogue

Don’t Panic

Easier said than done eh Corporal Jones of Dad’s Army.

I have lived with panic attacks now since my early teens, for the most part I can deal with the signs of them impending and head them off at the pass with not quite consummate ease. Except of course when I can’t and it all goes horribly wrong.

Case in point, work conference 200 miles away from home, so a double overnight stay. Didn’t sleep a wink despite driving and being tired. Cue the panic, cue the nausea, cue the sweating, dizzy spells. My hands are tingling now just thinking about it. Lucky I have a very supportive set of colleagues at the moment who were able to talk me down from many a metaphorical ledge that I’d reached the edge of at approximately 3am in the cold morning light.

The conference itself went fine. Of course it did. Will that stop me panicking at similar events going forward. Probably not no. Why? I can only venture a guess that when things get that bad and the physical and mental combine to give you the “night of your life” the rational becomes like a mythical dragon that was banished long ago. So you can’t say “Well it was fine that time before” because your internal arsehole mind replies back with “But what if it’s not this time”

Real Ramblings of my Arsehole Mind in panicsville:-

“What if I piss myself in front of everyone?”
“What if I shit myself in front of everyone?”
“What if everyone hates me?”
“What if I don’t know anyone?”
“What if there is someone there I know?”
“What if they find out I’m dumb”
“What if I never sleep again and crash the car?”
All these hits and many more….

I have further challenges in the next few months and in a effort to quell the Arsehole Mind I know I will have to consult tutors and managers to tell them of my fears for situations. I figure its best to be upfront so that people can at best help or at least be aware. However its a double edged sword because these consultations will almost certainly be my first communications with people. I want to convey enthusiasm, interest hell even talent. The Arsehole Mind forces me to display weakness, self involvement and a lack of confidence, straight out. The social equivalent of meeting the girl of your dreams and crapping your kicks before you’ve said “Hello”

Maybe thats a real worry after all.

Livin on a Prayer

What did you do Saturday morning?

Me I went to the centre of my village to get cash out, then into our equivalent of a 7-11 to get a few bits of shopping. Glamorous eh. Oh I missed out something, I got given a second hand necktie then I got prayed for and “blessed” twice.

As a practising atheist, praying as about as useful to me as a bacon sandwich is to a vegan. A man approached me as I walked, with my crutches, towards the cashpoint.
“Excuse me,” he said. “I’m from the local Christian church and we are doing a treasure hunt, and we needed someone on crutches.”
Strange treasure hunt, I think still walking.
He continues “Is there anything you would like praying for?”
“No not really” I politely reply. “But if you want to knock yourself out”
On I go to get my cash out, smiling to myself, thinking briefly of Anneka Rice and her Treasure Hunt. That was a good show.

Into the shop.

There is a woman in the way preventing me reaching the bread. I wait patiently, no rush there is plenty of bread. A mousey middle aged woman with a squint approaches me.
“This might seem very strange.” She says “But I saw you and felt I must go in the shop next door and buy you this.”
She was right it did seem strange.
She has in her hand a purple necktie. She continues “This is to show you are very much welcome into the kingdom of God.”

I take the tie, it would be rude not to. She blesses me and leaves the shop. I get my bread.

Regular readers (if I have those) will know that I am pretty much live and let live. If you wanna believe there is a man in the sky, fantastic. Just don’t expect or demand me to agree with you. It ain’t happening. Some of you will say, where is the harm in blessing and praying. Hell you got a free tie. Well did either of those people ask what I wanted? Offer me some actual assistance, carry my shopping to the car for instance. Surely this is far more “Christian” than mumbling a few words in the hope that God will hear.

It only occurred to me when I was home. These acts of religious “saving” or “blessing” isn’t for the benefit of the subject. It’s an entirely selfish act, a completely empty gesture. The equivalent of me going up to a stranger and asking them to watch me play with myself.

If you are religious and want to make a difference, pray if you want, but actually do something to help, volunteer, if you don’t have time send money, ask people what they need. If you think your God will help, great but you can help too. If you can’t bring yourself to actually help, go away and leave me to enjoy my Saturday.

Rev James, the only religious thing I've enjoyed recently.

Rev James, the only religious thing I’ve enjoyed recently. For good beer follow @goodbeertweet on twitter

Comment: The Ugly Face of Disability Hate Crime

Following the documentary on BBC Three last night about disability “Hate Crime” I feel I must add my comments. Sorry this is a little long.

I hate the term “Hate Crime” Gene Hunt expresses this best.

How are we ever going to move on, live together and integrate as a society if crimes against any group of people are labelled in such an insane way. It’s justifying why someone committed a grievous act against someone else, reporting a “hate crime” produces two groups of people. Those who support the victim, and those who support the perpetrator as they agree with his or her politics. If a murder is reported as a “murder” one person killed another, we can all pull together and agree that that is a bad thing regardless of our backgrounds.

This approach removes the often incorrect assumption that “he only killed him because he was disabled/white/black/green/gay” No he got killed because he was sleeping with his wife/husband/girlfriend/mother/tortoise/guitar.

Last nights show was presented by Adam Pearson who has neurofibromatosis which causes excess growth of the skin. Which gives him a striking and unusual appearance like many disabled people. Now I like to think that when I’m sat down or propping up a bar I look pretty “normal” I don’t of course, the way I hold myself up, my movement that is both ponderous and jagged are both clear giveaways that I am “different”.

As kids we stare at “difference” it’s a survival technique present in most inhabitants of the earth. Don’t believe me? Walk slowly into a field of cows. They will all look at you, “Who are you? Will you feed us? Will you kill us? Where are your trousers?” If no-one batted an eyelid at things out of the ordinary we and the cows would get killed.

Of course we like to think we have evolved, it makes us feel superior and for the most part it helps us fit in and not be different as the environments we inhabit are largely about inclusion and acceptance, on the surface anyway.

A place where our true feelings are often is expressed is here on the internet. This very page has a comments section. Upon which you are free, with varying degrees of anonymity to call me whatever you like. The comments section can bring out the very worst in people and statements or poor attempts at humour can be misinterpreted.

One of Mr Pearsons TV interviews was posted on YouTube and seemed to be a significant part of the programme. One comment was nasty suggesting that he should have been burnt to death at birth. Harsh you have to say, but the comment was sent to YouTube who didn’t do anything about it. Mr Pearson mentioned “genocide” and I turned off.

It’s a comment on YouTube! The person who made it is probably 12 and as he accompanied his comment with “lol” he was hardly suggesting people hunt you down and burn you. So to suggest genocide is giving this comment much more credence than it deserves. Much better to laugh at it or reply back taking it further “Yeah hideous burns might improve my looks” Thus disarming any malice and perhaps leaving the commenter with a “See him there, he looks a bit weird but he’s alright” feeling winning him over and maybe stopping such comments in the future.

There are times in everyones life where we need to pack our thickest skin (no pun intended) regardless of which groups we align ourselves with. There will always be people who prey on easy targets or promote hatred but we should never underestimate the power of our response.

If you are in the UK or use a VPN (shh!) you can watch the program here.

Being WyW_URZ

Like many of my age (old) I started gaming on a Commodore 64. The games took ages to load and I was invariably rubbish at them. I remember Speed King which was a bike game, way over 30 mins to load just to see the pixelated arse of my rivals disappear into the distance never to return.

Spin forward 30 years and I’m still rubbish at games, they just look better. I have finally got to grips with shooter style games using the PS4 controller (as opposed to mouse and keyboard) but of course the lack of dexterity and co-ordination caused by my disability does not aid this.

Movement of a character on screen for the average player is a relatively sedentary affair, you sit, controller resting in hand, relaxing on the couch, occasionally venturing to edge of your seat for a “good bit” but in my observation average gamer uses the same amount of movement to bring down great empires via their console as they do doing up a shirt in the morning.

Not me.

Just simply moving my character involves me being sat correctly, properly supported. Fully concentrated. That’s just to start. Once I get into the game, kak handedly actually trying to shoot other players, my legs want to get involved and if I tense up cramp can get me down better than any headshot. Jump scares? I’ll throw the controller in the air. It can be incredibly frustrating at times, fighting yourself, before you can play a game. Sometimes I shout at myself, it’s just a game though right?

Gaming is part of my life. I am aware of my own limitations, nothing wrong with trying to push them or adapting my style of play to suit. I play for fun, when I’m not having fun I do something else.
I play to beat my top score not top the leader board.
I play to help my team, although sometimes I know I will hinder them.
I play because very occasionally things like this happen

Feel free to add me WyW_URZ on PSN.

Ill

I have a cold… I know poor me I hope you all have the violins of sympathy out. So I write this with a nose like a unseasonable Rudolph only capable of smelling one thing, the inside of my own nostrils. You know the deal no doubt, as you too will have joined the snot brigade.

Where it gets fun however is when you pair this with disability, for disability makes everything fun don’t you know. For your average Joe or Josephine a cold means going armed with tissues and lemsip to work if you don’t feel too bad. If you walk with crutches however the daily commute becomes an issue. Most people for example don’t have to choose between catching a sneeze and falling over. Being on the ground having your fall broken by a snotty face is no fun so, most of the time the sneeze loses out, caught well by my beard, thats what beards are for.

If you manage to sneeze and catch it without a trip to the floor, well done. However careful you don’t sneeze too hard. If you do you might put your neck out and be really stuck, unable to move and on your back for a while. Oh and make sure no-one is near your feet. Because they will get kicked and/or covered in snot (if your catching isn’t so good) no control options are available.

Then there is the aches. Flu will make muscles ache and spasm for everyone. Well firstly welcome to my world, secondly if you muscles are shit to begin with, the flu likes to fuck them over nicely. I managed to get out of bed yesterday (yay me) and go and try to make tea. (I may be ill but I am still British) My leg went into spasm causing me to stumble backwards and drop the milk all over the floor.

So there I am, nose dripping, tea stewing in a puddle of milk that of course has gone down behind the cooker and everywhere. Dignity.. mine took a trip on a Greyhound bus. Hardly superhuman.

Achoo

"Cover Coughs, Cover Sneezes" - NARA - 514081

Poem: Not far Left

There was a time where left was alright,
It steadfastly led the way,
Right dragged along,
Inoffensively useless, but useless all the same,
It was always left to left to rescue the right,
The right that was mangled achey and tight,

Now time has gone and flown,
All limbs of this being all fully grown,
Left is tired of dragging the right,
Left now achey managled and tight,
Where left once led a valiant fight,
To get me out of the mess, planned by right,
Left now complains, grumbles and moans.
And shoots pains through to the core of my bones,
So I am left to hobble around,
Inbetween frequent trips to the ground,
I knew this would happen to me, as others before,
I’ll dust myself off as I take an age to rise, from the floor,
So as you stride out all stable, to make your choice,
Cast your vote, make them hear your voice,
Whatever result come election night,
It’s always a battle between the left and the right.

Pixie Lott (2009) 02

(Not my legs, my arse though)

Independence Day to Day

That is what is all comes down to, from a very early age everything was geared to being or becoming more independent. To your average Joe or Jane this means, getting a job, getting enough cash to move out from your parents house. To a disabled person however this independence can mean something most of the able bodied world takes for granted, like dressing yourself for example.

I am lucky I suppose my disability is by the standards of many quite mild, so I am able to function and live a “normal” life. I have a job, a handful of good friends, family and I live alone in my house where I pay full rent and have no assistance at all.

So as independent as one gets.

This year I have found I have become less mobile. Things are starting to hurt, or even worse just not work in the way of which I have become accustomed. (I’m not talking about issues that Viagra can fix here either) So where do I turn? Again the average Joe or Jane in the street seems to be under the impression that the disabled are either paralympians capable of bounding over buildings like the bionic man or so disabled that they cannot possibly function and have all the help and money to enable them to live out their days in comfort.

So in the view of the outsider, disabled people either, A don’t need more help or B have all the help they need.

Let me add my C to that list of options.

From a early age I was taught and pushed to be as independent as possible, to do things myself. This has brought me opportunities and allowed me to meet many wonderful people but it’s made me very single minded and set in my ways at at times a bastard to live with or be around. I haven’t needed help, so I have been off the radar. No huge social services file, no massive cash hand out that means I don’t have to work, no case worker I can ring up and get someone to help me.

In order for me to get assistance for anything, I have to be referred by a GP. The GP probably knows less than me about my disability and I have to wait along with everyone else to receive treatment from a guy who specialises in sporting injury. My sporting days are long gone!

Independence has for the most part been a very good thing for me. I just wish someone would have told me to ramp it back a little so that it would be easy to get support I need now. It seems the more you do, the less is offered, which when you think about it is very wrong. Only option to keep on going until you drop.

Still Happy 4th of July America from the old foe across the pond.

Lincoln Memorial July 4th 1.jpg
Lincoln Memorial July 4th 1” by J.W.Photography from AnnapolisFlickr. Licensed under CC BY 2.0 via Wikimedia Commons.

Cloud Cuckoo Land

I went to school with some right pillocks (dummys, for US readers) they would embellish everything. One guy said he went on a Football tour to Russia in the Half Term holiday, forgetting that I’d seen him that holiday and it wasn’t whilst sharing a bottle of Russian Standard round the back of the Kremlin’s bins.

I have subsequently met adults who like to big themselves up. One being a “Karate” champion who clearly had been confined to a wheelchair for the best part of his life. Don’t get me wrong I am fully aware disabled people can participate in most sports, however this guy just didn’t have the air of a black belt about him.

In stark contrast, I am usually a hyper-realist. No dreams, very little embellishment (it’s 10″) feet on the floor kinda guy. However, recently I have been allowing my realist mind to take a back seat. It’s scary, and confusing for my friends. It’s not in the realms of utter bullshit, I haven’t been going around telling everyone I got in the Reading FC first team or anything. Although the way we are playing at the moment, I just might. No this flight of fantasy is perfectly achievable in a strange way, if, and it’s a huge if everything works out. If I was a betting man I wouldn’t take the bet.

I am trying every day to take solace within my dream. Because it does for the most part make me smile like a lunatic. It’s only when my long standing realism kicks in that it brings me down.

This cloud right now, Complete with Cuckoo is well worth the crushing lows for the highs (which are not all fiction) There may be a time where it isn’t and I have pop whatever bubble my head has me living in. The difficulty I have is managing my expectations. There are so many factors over which I have very little control, I am putting things in place to try and get close to the dream. However there are degrees of success with this. Let’s say the dream is to live with a beautiful girl in a nice house, where we have twenty dogs. (not too far away from the dream but hypothetical)

What if I get the house and the dogs, but no girl. Or if I get the girl and we only have 19 dogs. Will I be happy with that? Or will I live on thinking, this isn’t the dream? Only time will tell.

Fan-tailed Cuckoo (Cacomantis flabelliformis) 1