Archive for September 2013
When... oh it is Ataxia Awareness Day
I'm pretty unaware of stuff. The 25th of September is apparently ataxia awareness day. It always catches me out. To me every *expletive* day is ataxia awareness day. I wake up and either almost fall out of bed or fall out of bed.
 |
| ataxia.org.uk |
It's Ataxia Awareness Day maybe one day I'll remember and do something. I'd like to do a marathon in a wheelchair. Not competitively because my coordination isn't good enough. Time and money is the main barrier. It'd be good to do a sponsored marathon to boost the wheelchair fund. I'll be hopefully using my multi-gym again to improve my stamina. I used to do a hundred sit ups every two days. I can't do one right now! So I need to work on that.
I'm not a fan of ataxia uk at the moment. Not for any particular reason. It's just that, they make money out of something and do stuff to continue their existence and like all some charities most of the donations go to the organisations running costs. They fund some research apparently.
Positivity, woohoo. I'm anticipating the final episode of The IT Crowd on Friday night. English sitcoms are a little frustrating. The series (season) is six to eight episodes and they tend to not be made that often. American(USA) ones tend to be more obvious, not as dark and most modern ones are all sex jokes. However, the season spans twenty odd episodes and they usually last a few seasons before being cancelled. Quantity vs Quality.
Was that a clumsy attempt at trying to justify not positing a blog entry daily?
Tag :
disability,
health,
When I had an issue
I hate having to depend on people. It's not a nice position to be in. I inconvenience bus drivers, the train rail assistance, taxi drivers, and I even have to bother the general public every time I am out at a store and can't reach what I want.
As I arrived, at the supermarket(grocery store) I was thinking how convenient it would be to have assistants who could go around the store to help disabled or short people. It would be nice to have a personal shopper. Then I remembered I needed to go back outside to the atm.
 |
| Japanese Marble Soda No Reason! |
I let the two women, who arrived just after me, use the machine first. This gave me some time to ponder. Causality. Would these two people who for no reason now didn't need to wait for me to fumble around getting my card from my wallet. My wallet is still jammed in my pocket and because my hands are taking care of my movement. The once mastered approach to a cashpoint, where it's all happening at once, is lost to me. Now I wheel up. Put a break on and hold up a few people while I'm getting my stuff together. So as I was saying would these four people, two more had appeared, be involved in a fatal accident because my actions had shifted their time lines by a few minutes. Or perhaps would it have caused them to narrowly avoid being in the wrong place at the wrong time. Looking back now I'm more content, effervescent even, maybe they where in the right place at the right time. I had been wasting huge chunks of my day playing a video game, where killing prostitutes was a relaxing past time between pulling off million dollar heists and destroying rival meth labs. This weekend my Mom and Mike visited. On Saturday night I went with my Mom, M and my wife to eat some Tapas, which, despite being from a chain, was all pretty delicious. Then we went to see About Time, which, despite being a romcom, was interesting. A decent way to waste two hours!
They did all kind of jobs that we can't do. Independence is a word. I have realised that independence doesn't actually exist. I've been in situations with healthcare and social-care 'professionals' who refer to independence. It's all bubbles. That's why currency exists. A phrase they love is independent living. It sounds good. A self sustainable existence in a secluded forest surrounded by blackberries, raspberries and all the other things. However, they mean things like personal care. It's pretty obvious that when discussing independence (which doesn't exist) you are probably in a situation where you don't have independence (which doesn't exist). It's nonsense. It's pretty funny that the government here are getting rid of Disability Living Allowance to replace it with Personal Independence Payments. It would have been more cost effective and also more obvious to just cross reference registered disabled with the hugely abused DLA claimants.
A register of cripples does indeed exist in the UK. Presumably so that if there is ever a fascist government half the work is done so they can just wheel us off a bridge. Being registered disabled has a few niceties though. Like one free carer ticket at the movies and similar deals at other leisure places.
I had pushed around and got everything and I was at the aisle with the cat treats. Sadie and Baxter like Dreamies despite them being junk. I like ice cream so treats don't need to be nutritious. Some fruit tastes very good to me so obviously not being nutritious is not a prerequisite. The treats are on the top shelf so I waited for a random passer by. He also bought some of the treats for his cat. I started to think about causality again but that was cut short by an employee at the store asking me if I needed any help. "I'm just finished."
Maybe they do have personal shoppers but this is England and service would mean people had to think about their job. Next time I may inquire at the often deserted customer service desk.
Tag :
disability,
wheelchair,
When I appreciated everything
 |
| A relatively low score |
However, that isn't the topic today. Well it kind of is one thing that has altered how I perceive life. It is fleeting. There are people who have issues of such insignificance. Genuine minutia.
My wife has CRPS. It's not nice. Especially when it gets too much for her. Which it does. Sometimes I envy her because she can hobble around and she can speak clearly. I definitely do not envy the pain. I can't imagine what that's like. When she must lie down all day. All I can do to help is bring her ice packs, water and medicine.
 |
| Insignificance is bliss |
Do I get depressed? Not really. I was in town recently. "Jesus, has a message for you!" A booming voice. I was not having a stroke. A man with a PA on his back was behind me. "Oh wow, this'll be good" I thought. So I stopped and he caught up "He told me this morning to tell you..." I may be embellishing this dramatic pause for comedy effect, but it's how I remember it. "Jesus loves you." I wondered if Jesus, or rather what this guy believes was Jesus, really referred to himself in the third person when he said something like "Today you will see a cripple. Tell him: Jesus loves you." Why would it matter? Jesus probably wasn't white. He certainly didn't speak English. Obviously he does now. I'm assuming he existed. I'm not religious and at times I've described myself as an Atheist. At the moment I'm agnostic. Religion is minutia. The sort of minutia people kill and die for.
I'd have a few things to say if Jesus called me for a chat...
What a strange post this has been. I've been burning the candle at both ends so this is the best I can come up with! Disappointing? Such is life.
It's hard, though there is always someone who has it harder. - get your mind out of the gutter. Stars, they burn for eons. How many stars died while you read this post? That's how insignificant we humans are. Would we attempt to communicate with ants? Or bees? Or wasps? So how many aliens see us and think "let's not bother." Probably none. It's not a language thing. "If a lion could speak, we couldn't understand him." as Wittgenstein said.
When I didn't like my voice
I was approaching that time which all youngsters must. The time when hair starts to sprout in areas you wish it wouldn't. Proof 1 there is no divine creator: Who thought ass hair was a good idea? Seriously?! I'll leave religion out of it for now. But the big three are coming...
When I was first using a wheelchair. I was out in Liverpool at an opticians. This was the first time someone had seen me and asked. Her response was amazing. I don't know why she said it. I think I must have imagined it. It was so bizarre. She asks. I tell her "Yeah, I don't mind, like, it's 'cause a me genes."(I had a tiny bit of an accent then) to whit her response, now bare in mind my mum is behind holding my wheelchair, "ah hey, so it's your parents fault like." I think I grinned.
I may have tangenitalised - Shakespeare made up words! Back to the voice. It is how people think they are in direct communication with your brain. I've contemplated becoming a mute. It'll solve a lot of misunderstanding. I was on the phone today to a woman about collecting some equipment. "... I'm trying to say yes, you can come 'round." she said "can we come around?" "yes, you can come 'round."
It was an infinite feedback loop. I think her brain melted. I said "ok. bye" and she said "ok. bye"
did they come? Well does the pope sh*t in the woods? ... No.
Well I was just finishing up at primary school (that's elementary) and my voice changed. It wasn't just deeper like everyone else. It got weird. I was no longer able to express myself how I wanted and it got worse. It still does get worse. It's a downward trajectory. That's how progression is. My voice is the biggest difficulty I have. It changes how people perceive me. I've met many people who have it worse. I've discussed it with speech therapists. They say it's not that bad and there are plenty of patients who would like to speak like me.
It matters to me. I like presenting. However, I don't like talking. At school I liked drama. However, I was always 'mumbling'. It's such a problem for me. I can't get over it. If I fall like I did the other week and twist my knee around under me. I sound like a baby dinosaur dying.
To waste one second of your time. That is a robotic arachnoid. Maybe I will randomly attach some short animations. That'll be interesting.
I'll add a 28 second one to the end of this blog entry.
I will probably start to update this blog bi-weekly rather than daily. It's too much on top of everything. I've hardly slept for a fortnight. I was so tired last night I forgot everything I had thought of writing and the writing showed it. Haha.
You probably would like an anecdote to read or something. Well ok then. This is something that comes up a lot. Infact you probably aren't really disabled until someone asks "So what's wrong with you?" Usually they'll be polite and prefix it with "If you don't mind me asking..." 'cause that makes it better. I've had men and women; usually men (? I wasn't even in a gay bar) ask me "does your c**k still work?"
That was one time! It happens to all men! Who told you?!
 |
| Back then I had a crap wheelchair. The kind too heavy to self propel. This picture is more recent. |
I may have tangenitalised - Shakespeare made up words! Back to the voice. It is how people think they are in direct communication with your brain. I've contemplated becoming a mute. It'll solve a lot of misunderstanding. I was on the phone today to a woman about collecting some equipment. "... I'm trying to say yes, you can come 'round." she said "can we come around?" "yes, you can come 'round."
It was an infinite feedback loop. I think her brain melted. I said "ok. bye" and she said "ok. bye"
did they come? Well does the pope sh*t in the woods? ... No.
I feel like this animation needs something like a warning because it's weird. It's not really trying to do anything other than make the audience think wtf! It's not supposed to be funny. Well it's a lead balloon. What is funny about it is that I showed it in the character animation class... It's poignant.
Tag :
disability,
health,
When I stopped using FriendFace
When it was first available in the UK, everyone(not really) was using MySpace, I was in my first year of university, it was new, exciting and only for students. So I signed up to that one (not myspace).
Several years later Google entered the fray with Google+. I've stopped posting to the other now. I haven't since I've used G+. Why? Because G+ fits my life, I have a Google powered android phone and tablet. I use Gmail. I use Drive. I use YouTube. I use Hangouts despite it sounding like something a dude bro would say. 'Hey Duuuude'...'Hey Brrrro'...'Wassssuupppp'...'Come hangout'... Er yeah; I prefer when my home screen had a Talk logo.
And now I use Blogger!
G+ does everything better than you know what and because of the way circles work I don't waste all morning reading a news feed I don't care about. There are just less Sheeple on G+. For sure. But less noise is good.
Google is everywhere. I am anticipating the day when I have Google Glass. That will be one step closer to having a microchip in the brain. Connected to Google. As Ricky Gervais and Karl Pilkington discussed.
Again I haven't really discussed dissability. I should have. I thought about some things earlier today. Maybe tomorrow...
Tag :
google,
When I became a professional
Ok I know at least one of the readers of this blog will love this topic. His love of Asbestos surveying is comparable to how the late Jimmy Saville felt about young gi... It's just as perverse and weird and bizarre. He's how I got the job I'm in so I owe him big.
I don't want to bring the industry of asbestos surveying into disrepute (Sarcasm much). Or write anything that would cause problems. I could. It would be funny. Maybe only for me and the nameless individual. Ha, really I'm saying this to tease him. I imagine he is reading every word expecting a bombshell. It's going to happen...
Actually I began my professional vocations while in 6th form and during my first year of Uni, I registered a business - with my brother. It got dissolved after a year though. I preferred sole trading. I started out being a free-lance web developer. Which is still part of what I do in my job -it's web centric. To me it's a little different to 'designing a website'. HTML and CSS are fractional parts of it. It's like calling an Astronaut a deep sea diver because of the helmet.
It bothers me when clients or nameless individuals suggest changing something that I've considered. "Oh I see what you mean, just change it back." ARGH! If I had unlimited disk space I would have a nice history repository. Alas, I don't and so just changing it back is often not as straight forward as pressing an undo button. I guess that's what the client assumes.
Recently I got pretty much finished on a surveyor drawing UI. Oh how boring I hear you cry but no... Give it a chance: From design to completion:
This email amuses me...
This gives you some idea of what sort of trivial nonsense I must endure.
No disability issues really other than the obvious. I need to find a better job!
Problem is, I'm lucky to have this and I know it.
I don't want to bring the industry of asbestos surveying into disrepute (Sarcasm much). Or write anything that would cause problems. I could. It would be funny. Maybe only for me and the nameless individual. Ha, really I'm saying this to tease him. I imagine he is reading every word expecting a bombshell. It's going to happen...
Actually I began my professional vocations while in 6th form and during my first year of Uni, I registered a business - with my brother. It got dissolved after a year though. I preferred sole trading. I started out being a free-lance web developer. Which is still part of what I do in my job -it's web centric. To me it's a little different to 'designing a website'. HTML and CSS are fractional parts of it. It's like calling an Astronaut a deep sea diver because of the helmet.
It bothers me when clients or nameless individuals suggest changing something that I've considered. "Oh I see what you mean, just change it back." ARGH! If I had unlimited disk space I would have a nice history repository. Alas, I don't and so just changing it back is often not as straight forward as pressing an undo button. I guess that's what the client assumes.
Recently I got pretty much finished on a surveyor drawing UI. Oh how boring I hear you cry but no... Give it a chance: From design to completion:
 |
| The vision in the design doc I did |
 |
| An Early touch screen prototype based off of some Canvas Draw |
 |
| The anonymous one's first effort |
 |
| A few more tools... |
 |
| Evolution Not Revolution Notice the penises have gone? |
 |
| A few months later when working on the air testing... I did this. |
This gives you some idea of what sort of trivial nonsense I must endure.
No disability issues really other than the obvious. I need to find a better job!
Problem is, I'm lucky to have this and I know it.
Tag :
disability,
work,
When I found my Niche
My wife said to me the other day that my blog is boring and I need to find one thing and write about it. I've been thinking about that and looking at other blogs. Maybe this is my Niche. Drivel. I'm not looking to do this professionally. It's a hobby. I just don't do things by halves. This is my blog. It's full of drivel. It's a dot com, it has a favicon(the little wheelchair dude above) and it has a logo. Those are things I did because it's bread and butter to me. Not because I have illusions of grandeur. One day I'll make my own unique theme so this blog is unique... The background photo I shot, from Westminster Bridge.
London is the greatest city in the world. It's big, I love the automatic ramps on the buses. Oh how the able sit and stare at the cripple as the ramp extends. I've been to Southbank several times. Waterloo is where the train goes. I hate people too busy to watch where they are going. Emailing on their iPhone. Yes it will hurt you when you hit my beast of a wheelchair. Make an issue of it. I dare you!
A few people stop in front of me. "You have presented your Achilles heel my friend." I have a condition where I can't suddenly change direction. I have momentum. It will hurt you when my footplate strikes and then you will be obliged to apologise. I don't care, you shouldn't have stopped in the vector (I move in relatively straight lines because a three wheel chair would be hard to keep straight so the guy who designed it made a way for the back wheel to lock unless the desired amount of unilateral force is applied).
"Ow you idiot go around!" I stopped and circled him slowly. "A wise guy ehh, in a suit" I thought "...we have time, let's tango." "Excuse me?" He looked down "What? You could have gone around." "Well I'll just turn around because obviously it was my mistake, the sheer intensity of the light shining out your ass. Blinded me." is not what I said. What I said was "Do you have any idea how difficult propelling a wheelchair is?" Ok so to that he had no answer. "Well that was shorter than we wanted" the voice in my head piped up as I rolled on...
Anyway just before our wedding we took a trip to Soho. My wife needed make-up. Soho is trendy, it's full of obnoxious self involved idiots. People stared like we had the plague. The pavements(side walks) are not accessible. Less of an issue for me but my partner has a conventional wheelchair. After the make-up was purchased my wife wanted, well needed, to go to check the antique shops. It was quite a tricky journey mainly in the path of taxis because the streets where often the only option. We'd spent a while in the make-up shop, a nice one, they didn't treat her with the respect she expected so we didn't buy too much. Here's a tip to people who would like tips or more commission. Mainly this is for cab drivers. I'm no less generous because I can't walk. So if you don't add extra charges for folding up my chair or act all weird about needing to get a ramp I'll tip you good. Unless you're an arsehole then you better add extra charges.
We were rolling around the street and some guy out drinking sniggered at me, pointed and jabbed his mate. Apparently mocked me and it upset my wife who could see.
Later on that evening we were in Carnaby Street. Sitting opposite the curiously named La Concepta a restaurant without food. A queue of people appeared, like a herd drive of sheep, they were led up and stopped just outside. We were already leaving and that was the way to the street. "It's formula One" the 'performer' shouted as I passed. I should have stopped and replied "Do you think that's an appropriate thing to call out as a wheelchair user goes past?" But he's a performer. I'd sooner heckle a comedian. "We have to pick our battles. We'll just write about him in a blog in a years time."
Yes the staring is annoying, the questions too and the silly things people say. In the summer of 2012 I cant tell you how many people stopped me on the street to ask "Are you training for the paralympics?" "Why yes, That's literally the only reason they let me out." I didn't say that I often smiled and mumbled fu...ing idiots as I rolled on. Just roll on.
I was in Portsmouth and coming down a bit of a gradient (it's mostly flat here) so a woman was walking the opposite way right in front of me. Now there is a bit of a back-story here. My chair has independent hub brakes. If I use them too harshly I can spin, when I spin 9/10 times I capsize like Jeremy Clarkson in a robin reliant. It hurts, but it's the only issue the chair has.
One time I was in Hampstead Heath with my wife, she was ahead of me, and we were descending after our ascent. It started to rain so the breaks started to make noise and react differently, catching sometimes and screeching other times. I lost control and I was going too fast. I got into a bit of a tank slapper, it'd go to spin left so I'd break right then the opposite until I faced it was inevitable and let it go. I can only imagine what she could hear. By the time she turned around I was on the floor curled on my back like a potato bug.
Back to this little slope in Portsmouth, I've wiped out before in that spot so if some lady wants to play chicken with my wheelchair. I'm not going to risk injuring myself because someone is ignorant. I've already lost momentum because I'm carefully slowing down without tipping. Oh yeah I can tip straight but there are just two issues to this chair. So anyway she moved at the last minute when I had virtually stopped. "You shouldn't use your chair as a weapon dear" she said as she passed. "Ok we can take her pop on one break and bring the ship around to face her." The voice was getting excited. It told me to ask her what she said. Which I did. She repeated the same thing. "It's not a weapon and I don't use it like one." I don't know why I chose that response. It was weak. The voice refused to talk to me for a week after that.
 |
| Made in China. Souvenirs |
A few people stop in front of me. "You have presented your Achilles heel my friend." I have a condition where I can't suddenly change direction. I have momentum. It will hurt you when my footplate strikes and then you will be obliged to apologise. I don't care, you shouldn't have stopped in the vector (I move in relatively straight lines because a three wheel chair would be hard to keep straight so the guy who designed it made a way for the back wheel to lock unless the desired amount of unilateral force is applied).
We were rolling around the street and some guy out drinking sniggered at me, pointed and jabbed his mate. Apparently mocked me and it upset my wife who could see.
Later on that evening we were in Carnaby Street. Sitting opposite the curiously named La Concepta a restaurant without food. A queue of people appeared, like a herd drive of sheep, they were led up and stopped just outside. We were already leaving and that was the way to the street. "It's formula One" the 'performer' shouted as I passed. I should have stopped and replied "Do you think that's an appropriate thing to call out as a wheelchair user goes past?" But he's a performer. I'd sooner heckle a comedian. "We have to pick our battles. We'll just write about him in a blog in a years time."
Yes the staring is annoying, the questions too and the silly things people say. In the summer of 2012 I cant tell you how many people stopped me on the street to ask "Are you training for the paralympics?" "Why yes, That's literally the only reason they let me out." I didn't say that I often smiled and mumbled fu...ing idiots as I rolled on. Just roll on.
I was in Portsmouth and coming down a bit of a gradient (it's mostly flat here) so a woman was walking the opposite way right in front of me. Now there is a bit of a back-story here. My chair has independent hub brakes. If I use them too harshly I can spin, when I spin 9/10 times I capsize like Jeremy Clarkson in a robin reliant. It hurts, but it's the only issue the chair has.
 |
| Going down isn't always the easy part |
Back to this little slope in Portsmouth, I've wiped out before in that spot so if some lady wants to play chicken with my wheelchair. I'm not going to risk injuring myself because someone is ignorant. I've already lost momentum because I'm carefully slowing down without tipping. Oh yeah I can tip straight but there are just two issues to this chair. So anyway she moved at the last minute when I had virtually stopped. "You shouldn't use your chair as a weapon dear" she said as she passed. "Ok we can take her pop on one break and bring the ship around to face her." The voice was getting excited. It told me to ask her what she said. Which I did. She repeated the same thing. "It's not a weapon and I don't use it like one." I don't know why I chose that response. It was weak. The voice refused to talk to me for a week after that.
When I said I do
My then fiancée had gone back to the States and was coming back hopefully before the marriage. So securing a venue was a task I had been given.
I found two great venues in North Wales! I also found a company to do all the finishing touches. My wife wanted to do it all herself, but I knew that wasn't a good idea, I told Mandy (of Mantones) that the bride wanted to make it unique and would be telling her what to do as soon as she was in the UK. Mandy and co did an amazing Job at Kinmel Manor where we had the reception. Bodelwyddan Castle was the venue for the Ceremony. Which was going to be decorated suitably for Halloween.
The venues were both super accommodating and very helpful. The facilities and access were good. The staff at the manor were super helpful as was Mandy on the day especially.
Pictures tell a thousand words so...
Photograhy: Liz Byrne & Shaun Fanning
... Well I have to say... The cake looked amazing, well it all was great. It all fit together. Our invites had black sealing wax with a pumpkin. The favour box was a coffin. It was perfect. Well except for it would have been nice to have more guests. To help with the bride's guests travel expenses so they could have come and to have been able to afford a designer dress for her. Oh and a decent wedding car... A better hairdresser...
The first and last time I'll be a groom.
 |
| Kinmel |
 |
| Bodelwyddan Castle |
The venues were both super accommodating and very helpful. The facilities and access were good. The staff at the manor were super helpful as was Mandy on the day especially.
Pictures tell a thousand words so...
Photograhy: Liz Byrne & Shaun Fanning
 |  |  |
 | ||
... Well I have to say... The cake looked amazing, well it all was great. It all fit together. Our invites had black sealing wax with a pumpkin. The favour box was a coffin. It was perfect. Well except for it would have been nice to have more guests. To help with the bride's guests travel expenses so they could have come and to have been able to afford a designer dress for her. Oh and a decent wedding car... A better hairdresser...The first and last time I'll be a groom.
