Wednesday, 9 December 2015

Let off lightly...

I was actually going to post about a different subject today but I received an e-mail this morning and now I have a few points I would like to get off my chest. The message was regarding the Arsenal tickets I was fraudulently sold back in September 2013. The case has gone on for a long while (over two years) but finally the court sentenced the despicable human being yesterday. In case you are new, I stupidly purchased three Swansea away tickets online from a complete stranger and convinced myself that the whole transaction was above board. I lost £120 but turns out there were at least 18 other victims so I dread to think how much was extorted from football fans in total.

The good news is that the court found the piece of scum guilty and 'punished' him for his wrong doings. However, although the man skipped court and a warrant for his arrest had to be issued, the judge was extremely lenient in his verdict because the defendant pleaded guilty. I think the fact he was only given an 8 month custodial prison sentence (suspended for two years) and ordered to work 120 hours unpaid work in the next 12 months sums up everything that is wrong with the UK justice system. 

Sorry (not sorry) but when it comes it to punishment, this country is an absolute joke.  I am not just talking about this case. Every day, absurdly soft sentences are being handed out by the courts. I will use the Becky Watts murder case (http://www.telegraph.co.uk/news/uknews/crime/11993648/Becky-Watts-murderer-sentenced-to-life-in-prison-with-a-minimum-of-33-years.html)) as an example. 33 years for horrifically murdering your step-sister? Does not seem enough to me. He will get out of prison when he is 51 so will probably have a fair bit of his life left (because normally it is good people who die prematurely). He should never enjoy freedom again and I feel should even be killed but the death penalty is a whole separate debate. All I am saying is no wonder young people do not fear authority or breaking the law. Existing 'punishments' are not good enough.

Every cloud has a silver lining though as I will be getting 50% of what he took back as the court ordered him to pay back £1 for every £2 stolen within the next 12 months. I do not understand why the judge did not make it full compensation but I suppose £60 is better than nothing. I thought I would get nothing and had just wrote it off as one of my expensive learning curves. The message is clear though. Committing fraud and stealing is a crime but if you get caught, you can keep half of it IF you do the unthinkable and work in a charity shop (perish the thought).

Are you taking notes Michael Gove (Justice Secretary)?

Bye for now!

Wednesday, 18 November 2015

Thinking about death...

It has been nearly a whole month since I last posted on here but I am not going to make excuses about how busy I have been of late with trips to Sheffield, Swansea and even Germany to watch the Arsenal. Instead, I am going to say that a few months ago (as some of my hardcore followers may have noticed) I made the decision to only write when I felt like it instead of forcing out a post for the sake of regularity. Sorry if that disappoints some of my loyal readers but it means that you can take more enjoyment on the odd occasions 'Wheelchair Boy' does choose to grace you with his presence.

So, the subject of my first blog post back following a brief hiatus is a bit taboo and of course upsetting to most people (except psychopaths which, believe it or not, IS NOT me). What I am about to say may come across as a bit harsh or close to the bone, especially after what happened in Paris last week, but it is true and I just wish everyone would accept reality.

The fact is that we are all going to die (#BreakingNews). 'Wheelchair Boy' could do a Stephen Hawking and live longer than what the experts predict but the probability is I won't make it past 40. Obviously I could pass away at any point in life, whether it is the Friedreich's Ataxia finally getting the better of me or something like a car crash being the cause. I just think so be it; there's nothing I, nor anyone for that matter, can do.

That's why I am not comfortable with the whole scaremongering by the British media following the attacks in Paris on Friday. Yes, acts of terrorism are horrific but they do not mean life should stop. I have tickets for the European Championships in France next year and it did cross my mind that I should perhaps return the tickets. Then I thought you simply cannot live life if you are scared of death. I know people who have died in accidents. Should I not go out just to be on the safe side? I also have read about people choking to death. Should I just avoid food and remove my tongue? Saying that, if I do not eat I will die so I am screwed either way. There is simply not a way anyone can avoid death.

I doubt I will be quoted in years to come but my philosophy is "embrace death before death embraces you". Death is a terrible thing and is unfortunately part of life so accept that it is going to happen at some point because that way, you can live without fear. It goes without saying people want to put it off for as long as possible but do not let it become the main focus in your life. My attitude is continuously questioned but I am willing to bet that at least one of those 126 victims in France was unbelievably health conscious; did not drink, did not smoke, always ate healthy food, exercised regularly yet still died which proves that death can strike anyone at anytime.

Worrying about death really is a waste of time.

Bye for now!

Monday, 19 October 2015

There's only one Kia Venga...

I do not want to wish anyone's life away but I find that time now flies by and before you know it, it will be 2016. Another year will have passed, another Xmas celebrated and another birthday reached. This one will be my 22nd which is just ridiculous but I guess that is how life works; every 12 months you add another tally to your name. Take how long I have been in this flat as an example of on one of them "Where has the time gone?" moments. I am approaching my one month anniversary already. That is insane but at the same time, it does feel like I have been living here for years. The reason I am saying this is because time has got the better of me this month and other commitments have meant this is the first post of October.

Anyway, the current lease of my car runs out next May so I have been looking at loads of different makes and models to see if there is one more suitable for my needs than the Venga. I wanted to get a vehicle with a larger boot (as I now need a travel hoist when we go away) and taller doors (so we do not have to recline the chair back to fit it in the car) but there were none available on the Motability scheme with a nil-advanced payment. I have just got a roof rack and will stick with the Kia unless any new cars are brought out in the remaining seven or so months. It has served me well over the past two and a half years; presenting no issues to me apart from the couple I have previously mentioned.

I have had some pleasant journeys in it such as the trips to Dortmund and Brussels. Let's hope Arsenal make it a perfect hat-trick of European away days for me when I visit Münich in a couple of weeks. I have also had some awful times in that car including long, depressing trips home from Liverpool and Manchester respectively. 4 hours in a car after a defeat is painful. The worst outing though happened back in August when I had my first road traffic accident. Luckily, it was not serious but it shook me up and was annoying; especially as it has emerged that the crash was probably staged by other people as part of an insurance scam.

Looks like Venga will be sticking around for the foreseeable future!

Bye for now!

Monday, 28 September 2015

Settling in my nest...

I cannot believe I have only been in this flat for a week and a half because already it feels like home. I have surprised myself how quickly I have settled in. Almost like I have been living here for years. I admit it feels surreal to be away from my parents but I am enjoying being a grown up and my new found freedom. It is nice to do simple things such as go to bed when I want (at home, carers would put me to bed at 10). Not only was the move positive for me on a personal level but it has helped to strengthen relationships with loved ones. Absence makes the heart grow fonder and all that jazz. Of course I was extremely apprehensive two Thursday's ago when I spent the first night here but them fears have now completely gone and I am now relaxed in my new surroundings.

My mum was (and still is) very anxious about me flying the nest but the thing is, I now talk to and spend quality time with my family more now I am out than I did when I was back at home. I have not just forgot my parents and visit quite regularly; not just to watch football or rugby matches, honestly. I have roast dinners as well. Seriously though, it's nice to see them properly because before I used to spend a lot of time in my room on the computer or PlayStation. At the same time, it's nice to retreat to my flat, which is calm and peaceful. Basically I have got the best of both worlds.

It felt like an eternity between the date I signed for the keys and when I was finally able to move in but it was certainly worth the wait in the end.

'Wheelchair Boy' is very happy in his new habitat!

Bye for now!

Thursday, 10 September 2015

At last...

Nearly 4 months after I was given the keys, I am over the moon to finally say I will be flying the nest and moving into my new flat next Thursday. You all should be aware by now (if not, may I suggest you read some older posts) of the arguments my family and I have had with the council regarding the lack of fencing around the property. After months of not listening to our points, they have thankfully come to their senses and have agreed to put fences up as they can see the potential security issues of having an exposed garden. Although their change of heart probably came about because they have had enough of 'Wheelchair Boy' and just wanted to put the situation to bed. Either way, I am more than happy.

This move will be a giant milestone for me as hopefully the flat will be my home for the foreseeable future but it all feels very surreal. Probably because I've waited for so long but now a date has been confirmed for my bed and hoist to be transported over, I can begin to get properly excited. One positive to come from the 'fence saga' was everything is done such as decorating, adaptations, furniture is in and all the white goods are ready. My current bedroom is looking kind of bare, which is making me even more desperate to move out and start a new chapter in the book they call life. However, it's only a week so not long to wait.

I realise that I probably sound too eager to get out of my parents house and I apologize if it appears I am being ungrateful.  It's just I want to stand on my own two feet (ironic because I physically cannot). My mum and dad have done a marvelous job for 21 years but I would like to be as independent as possible for someone with Friedreich's Ataxia. I already have a team of carers so I am partly independent at the moment but having my own place will be the cherry on that 'freedom' (best to say that in a Scottish accent) cake. I will be able to do what I want (within law), whenever I please (apart from play music loudly after 10PM).

Bye for now!

Thursday, 3 September 2015

Struggling with hotels…

My regular readers will be aware that, during the football season (August-May), I travel over land and sea to follow the Arsenal. We normally drive there and back in one day but if it’s a long distance away, we have to book into a hotel for the night. The furthest ground from St. Albans in the Premier League is Newcastle but luckily we got that fixture out of the way last weekend. However for the first time, I realised I probably won’t be able to stay in hotels anymore.

In the past, I have managed to quickly stand and twist to get in bed but now I cannot even manage that. The message is not getting from my brain to my legs, which is incredibly frustrating. I just end up shouting at my legs ordering them to work like a crazy person (reminiscent of a certain scene from the ‘Warwick’ episode of The Inbetweeners).  So it’s probably best if I avoid hotels from now on unless my OT can provide some sort of portable hoist.

While I am on the subject of hotels, I would like to wholeheartedly recommend the new Premier Inn on St. Peters Street if you are reading this and would like to visit the home City of ‘Wheelchair Boy’. I have not stayed in it but on Monday, I went on a ‘familiarization’ tour to check out the facilities for disabled guests on behalf of the St. Albans District Access Group (really, I just wanted to have a nose around).

I am pleased to say that it was easily the best Universal Access bedroom I have seen in a hotel. The room itself is huge, everything is at the correct level for wheelchair users and the bathroom is full to the brim with handrails (a very useful thing for those who can just about still transfer). Even the bed was height adjustable. There were only two things missing which would have made it perfect for me. A standing hoist and a clos-o-mat toilet but I doubt either them are going to become standard features in an accessible room any time soon.

My only suggestion is that Premier Inn adopt the same policy as Holiday Inn; they provide a carer's room free of charge.

Bye for now!

Wednesday, 26 August 2015

Writing partner WANTED...

I was going to simply put 'Partner WANTED...' but I realised that would suggest this post was about my (non-existent) love life when in actual fact it's about getting all my ideas down on paper. Basically, I have a bunch of cool ideas for potential TV shows but struggle to turn the initial thoughts into scripts. Take this comedy I have been working on intermittently for two years. I have all the plot lines mapped out in my head but when it comes to sitting down at the computer and opening the document, something comes over me. I thought it was just me being stupid but then I thought of great comedies I love such as The Inbetweeners and Extras; both had two writers and it makes perfect sense. You can bounce ideas off a co-writer and run things past them so that you don't end up going insane or with a script that no one else likes.

So if you fancy doing some writing with me, please get in touch. We could be the next Ricky Gervais and Stephen Merchant. You'll need to wear glasses and be tall as I'm obviously the slightly chubby one in this analogy. But seriously, I am looking for someone with a similar writing style to me (surely I can't be that unique) otherwise we will want to take the script off in completely different directions. Like I said, I think my ideas are genius but I struggle to convert what is in my head into a decent screenplay. I've not just got this sitcom in mind, I also have thought about doing a few dramas. On my 'to do' list, I have a few potential programme names but I really do not think I will ever get around to ticking them off on my own.

I know this post has been like some weird lonely hearts advert where instead of looking for romance, I have put the feelers out for an intelligent person who is interested in writing and has a GSOH. However, I haven't really done much lately apart from the football because the weather has been horrible and I do not like going out in the courtesy car (as I mentioned in last week's post). Hopefully though, my Venga will be back tomorrow.

Please pass this post on to anyone who might be interested in winning a BAFTA ;)

Bye for now!

Monday, 24 August 2015

Platform lifts...

The majority of people do not realise that nowadays putting in a lift is not difficult. Gone are the days where a shop could argue a building is too old for an elevator to be installed. I understood that companies used to not be able to install a standard lift in listed buildings because the law means that you cannot change the structure of those particular places.

However, platform lifts are readily available nowadays from sites such as https://www.tkencasa.co.uk/. They are not complicated and can be fitted anywhere (even in a basement nightclub in Benedorm) so the argument that it will involve a lot of building work no longer stacks up. The Jones Bootmaker store in St. Albans is a great example to illustrate this very point. Next used to say the building is listed and a lift can’t be put in.  Shortly after the premises changed hands, a lift suddenly appeared. Thus making the ‘listed’ argument defunct and one 'Wheelchair Boy' no longer accepts.

There are countless shops I have been in where the men's section is only up or down a few steps; not completely on a different level. I have taken my custom elsewhere but it would be simply overcome by a platform lift. It's not an unreasonable request because they can be installed on existing stairs and do not require a building to completely change. These 'mini elevators' are similar to portable ramps in that they are simple add-ons but improve accessibility tenfold.

So if you do own or manage a shop/pub/restaurant, I hope that I have encouraged you to buy a platform lift (https://www.tkencasa.co.uk/platform-lifts/). Not only is it the right thing to do but it totally makes sense from a business point of view. The purple pound (name given to the spending power of disabled people) is estimated to be worth £212 Billion but is often overlooked by businesses. A small investment in making your premises' accesible to customers in wheelchairs will be so worth it in the end.

At the same time, if you know of any buildings that could do with improving their access, please get them to read this post (as well as the rest of my blog of course).

Bye for now!

Thursday, 20 August 2015

Added stress..

The ongoing fight for a fence to be erected outside my flat has been causing me a fair deal of stress of late (hence why I have posted about it a few times because writing seems to be a release) so I forgot to mention that I was involved in a collision last week. Thankfully, my carer and I were not hurt but it did shake me up as it was my first accident. The same cannot be said for my Kia Venga, which is currently off for repair. I just hope it is returned soon because the courtesy car I have is awful. To be fair, it didn't appear that bad. Just a new bonnet and light but saying that, I'm not a mechanic so there might be hidden problems that I could not see on the outside.

Obviously courtesy cars are not fitted with the Carony Classic so when my mum explained that I cannot transfer, Motability agreed that they would give me £50 a week for taxis. However, what with my busy schedule following The Arsenal, that would soon run out. I then agreed that, although I hated them with a passion, I would get a Wheelchair Accessible Vehicle for the short period my Venga was being fixed. On Saturday, a Peugeot Partner Tepee arrived from Scotland. Since then, I have only been out in it on a needs must basis because it has done something that I never thought was possible. I now dislike WAV's even more than I did before.

The ride is so uncomfortable in the back. Even-though I am strapped in securely with clamps, I still end up feeling every little bump in the road. As I've mentioned before, another problem with WAV's in general is that because the wheelchair position is at the rear, you feel out of the loop like a child and unable to join in with conversations. Particularly with my hearing and speech problems, I end up thinking that I may as well not be in the car. Then there are design faults with this Peugeot such as the seat belt, which is difficult to get on and once it is, it doesn't go across my shoulder properly like a  standard one. Also when the vehicle reverses, it makes a ridiculously loud noise (luckily I do not have epilepsy).

They are just a few reasons why I was right to get the Carony Classic over a Wheelchair Accessible Vehicle.

I cannot wait to get my Kia back (preferably before our trip up to Newcastle next Friday) so that I can re-take my rightful place riding shotgun in the front passenger seat next to the driver and more importantly, be back in control of the radio.

Bye for now!

Tuesday, 18 August 2015

I'm serious...

I think I've mentioned before how much I hate my voice and the speech part of my condition is far worse in my opinion than the fact I cannot walk. Being wheelchair bound obviously is far from ideal but it's not the end of the world. I complain a lot (as you may have noticed) about accessibility but in  the main, things are improving. Disability aside, I can still do a lot of simple activities such as going out to restaurants or to the cinema like able-bodied people. However, communication is a key part of what makes us human and having the ability to do that gradually removed is truly awful. I just feel degraded and less of a person.

People will either read them last couple of sentences and reassure me that my voice is fine (thank you but I know that it's getting worse by the day) or think that I'm being pathetic because at least I'm not a mute. That is normally how I deal with my condition. I usually think to myself that I could easily have a worse disability than Friedreich's Ataxia and while I am grateful that I can still speak, I am starting to feel like I might as well be non-verbal. A ridiculous statement I know but that is how various people including the council are making me feel of late. A worthless 'Wheelchair Boy' who should be ignored and forgotten until I die  (everyone would have a much easier life if disabled people were not around).

Some might say that I am being melodramatic but my life has been put on hold for nearly three months with this whole fence situation and I've had enough. My points make a lot of sense such as the fact my tenancy agreement states that the property is 'an exclusive flat with an exclusive garden' but still they will not listen. I went into the council offices today to get a few things off my chest but all they do is pay lip service and pretend to be concerned. I have another meeting on Monday but it seems so pointless at the moment. I know exactly how it will play out. They will patronise me by repeating points I already know and not take a single word I say on board.

What makes it worse is that I am the stereotypical bloke. I bottle up all my stress and worries, which I realise is not good for my heart. This saga HAS to be resolved amicably soon for the sake of my health.

Bye for now!


Wednesday, 12 August 2015

God and disability...

After yesterday's post about human morality in relation to people using disabled parking bays when they should not, I have decided to tackle an even more serious subject and that is the question of God (I'm certainly putting my Philosophy & Ethics A-Level to good use this week). I know religion is quite controversial and provocative but everyone is entitled to an opinion. It is totally fine to disagree with me. I just thought my readers would be interested to find out a bit more about my belief system and the reasons behind it.

I think I have mentioned in the past that I am a staunch atheist (although I have realised that I am more of an 'agnostic' because I cannot be 100% certain that there is no God.) and it does not take a genius to work out why that is. Being disabled and believing in a God just do not go together; a bit like the way a physicist cannot, in my opinion, be devoutly religious. Most people who feel God does not exist point to science and use theories such as The Big Bang or evolution to disprove an almighty creator. They also cite the lack of empirical evidence as showing God does not exist.

While I agree with the points and use them whenever I am discussing this subject, the fact that I have Friedreich's Ataxia is what wrangles with me the most when I am contemplating the existence of God. How am I meant to believe in a higher being if illnesses like mine litter the human race? The same applies to natural disasters. Surely a God would not allow earthquakes or hurricanes? A common response from believers is that God is testing humanity like that makes it acceptable. Bringing illness and suffering upon someone is a pretty callous examination so I cannot envisage a God doing that.

However, perhaps I am wrongly giving the idea of God the attributes of a Christian one (after all, I was indoctrinated with the religion from an early age as I attended a Church of England primary school). Maybe God does not have to be all powerful, full of love and able to see/hear everything. There could be a God out there that is evil and gets a kick out of seeing humans suffer...

I guess I will never know for sure but I am 99% convinced that God does not exist.

Bye for now!

Tuesday, 11 August 2015

No need for thanks...

I have always been aware ever since I was diagnosed with a disability that in car parks (particularly in private ones where there are no wardens around to give tickets), some motorists will try their luck and park in the spaces reserved for those with mobility issues. I remember when I could still walk but not very far, I would get out normally and people would be angrily staring at me thinking I was able bodied. My mum would soon get out my Blue Badge and flash it at everyone as if to say "Look! He is disabled!". At the time, it used to frustrate my family and I that people would jump to the wrong conclusions. However, I am glad that the public are self-policing these bays and making sure inconsiderate people do not use them.

You have probably seen this video as it went viral a couple of months ago but this is my favourite example of the general public taking action into their own hands:
http://www.huffingtonpost.co.uk/2015/06/25/guy-parked-disabled-space_n_7660532.html
The Brazilian people are certainly more creative and thoughtful than 'Wheelchair Boy', who wanted to urinate in a bottle and throw it over a soft top convertable that I have noticed parked illegally on a few occasions down at my gym (obviously I would never actually do that).

I just think those who do abuse disabled bays are so ignorant. The spaces exist for a reason. They are the ones closest to the shops; not as a kind gesture for customers with mobility issues, but because Blue Badge holders need them.  Either they can only walk a short distance or for wheelchair users like me, it would be a struggle for my carer to push me and the shopping all the way to the back of the car park. Also, I need room at the side and back to get my seat in the car and to put the wheelbase in the boot. That's why I got slightly annoyed when I saw this sign at Sainsbury's:


You don't need to thank people for doing the right thing. What next? A sign near an ATM machine that reads:
'Thank you for not mugging people as they withdraw cash.'

It's not necessary as most people (hopefully) have an innate sense of what is right and what is wrong.

Bye for now!

Friday, 7 August 2015

Need a fence...

It seems like years ago that I was given this flat by the council yet I still haven't moved in yet. When I first looked around the flat, I mentioned a few concerns I had with the property such as the fact that the toilet was just a standard one, doors were inaccessible and the lack of fencing issue. I was assured by everyone I spoke to they were only minor and should be resolved soon. Sure enough, the threshold on the front door and the relevant bathroom adaptions were done immediately but once I had signed for the keys, the council started putting the responsibility of getting a fence on me. If they had informed me that the gardens would remain fence-less, I would not have signed the contract. I simply do not have the excess funds to cover fencing especially when you take into account the monthly bills I’ve now got to pay such as gas, water and electricity.

The predominant reason I must have fences before I move in is for my safety (and carers) above all else. As it stands at the moment, absolutely anyone can access my garden and therefore my back door/windows.Talk about being exposed. It's not that my neighbours pose a threat but unfortunately we do not live in a safe world so therefore you need fences to keep out, or at least deter, criminals. By definition, it is 'designed to restrict or prevent movement across a boundary'  so I don't know why the council cannot seem to fathom that the main function of perimeter fencing is to 'prevent trespassing'. I should probably man up but I would like to feel secure in my own home. I would hazard a guess and say that pretty much all of my readers have a fence.

To top it all off and put a cherry on the whole situation I now find myself in arrears because housing benefits refuse to pay my rent as I haven't moved in yet. I have explained why this is on numerous occasions but the council do not see my point of view at all and think I should back down. I refuse to give in though because no where in writing does it state that this property does not come with fences. The tenancy agreement is very ambiguous but does state that 'tenants must maintain fences' and that is fine but the fact is I do not have one to begin with. I would maintain it if I did.

Yet again, 'Wheelchair Boy' is not going to go quietly and will fight for his rights until the bitter end.

Bye for now!

Wednesday, 5 August 2015

The letter...

Regular readers will be all too aware that I'm a massive Arsenal fan and during the season (which thankfully kicks-off again this weekend), I follow my beloved team around the country. I've even been lucky enough to attend matches in Dortmund and Brussels in the recent past. Away days are brilliant but I have realised that the majority of grounds treat disabled supporters as second-class citizens and something needs to be done. This prompted me to take notes of every stadium I visited last season and compile a strongly worded letter, which I sent to the Premier League back in early June. If you would like to read the letter in full, please read this edition of FCBusiness https://cloud.3dissue.com/6374/7271/16420/FCBusiness86/html5/index.html?page=1 and turn to page 35.

I have had a couple of replies from the Premier League; one asking if it was OK to forward the letter to the relevant clubs and hear what they have to say (it was a pointless exercise though as only Arsenal responded directly to me) and a more detailed e-mail speaking about how the Premier  League run training programmes about inclusivity and have Access Visits where staff are told how to improve the match-day experience for impaired visitors. They also mentioned an Access App that tells you what facilities are available at each stadium. Basically a load of PR guff aimed to shut me up and show that the PL do care about disabled fans. However,  I do not give up that easily.

That's why I have replied demanding that the Premier League step up and show the 20 clubs under their jurisdiction who's in charge. I feel they should force teams to improve facilities for disabled supporters and punish those who don't comply; instead of politely requesting a better service for the disabled. I have also been in conversation with the office for Shadow Secretary of Culture, Media and Sport who seem very interested by my findings and are going to be running a story on the subject later in the week. They also said some media outlets might be interested so watch this space.

Bye for now! 

Tuesday, 4 August 2015

Personal Assistants...

I know it's a Tuesday but here is a bonus post because I feel guilty that I did not do one on Friday:

BBC Three has done what it does best by scratching beneath the surface and showing that disabled people are not special nor are we an inspiration to all. The 'Defying The Label' season alone proves why the channel will be sorely missed because it provides an entertaining yet highly informative view on a subject that the main channel wouldn't touch with a barge pole. It's just a shame that these kind of programmes, which illustrate that we are all human regardless of our physical condition will be seen by less people when the channel closes. I have found/am still finding all the shows very interesting but the two-parter about hiring PA's particularly resonated with me as I have had similar experiences to those in the documentary.

Probably the worst part of being disabled is living with the fact that you cannot do everyday tasks for yourself. For me, mundane activities that able-bodied people take for granted such as getting dressed are impossible and I need Personal Assistant's to help. My mum used to be my main carer when I was growing up and that was fine but as I entered adulthood, I no longer wanted to depend on my mother. I first got outside carers in shortly after my second spinal operation (aged 18) and have never looked back. I was obviously very nervous about getting strangers to care for me but having PA's has definitely improved my life and I couldn't imagine going back to relying on my parents.

Two of my current Personal Assistant's have been with me since the very start back in 2012 (my brief Sabbatical at University aside) but so many others have come and gone. Some have moved on to another job or have gone traveling but I've parted ways with some purely because I'm very picky about who provides my care. As the name of the job suggests, it is personal and can be quite intimate so I've got to click with that person immediately or else it's safe to say, we're never going to work. It's like a relationship without any of the romance or sex. When it feels right, a true friendship blossoms. There are times when you are annoyed at them but you soon make up.

Click these two links if you want to watch both episodes:
http://www.bbc.co.uk/iplayer/episode/b063j5bb/wanted-a-very-personal-assistant-episode-1

http://www.bbc.co.uk/iplayer/episode/b063qmzq/wanted-a-very-personal-assistant-episode-2 

As they say in the show, there are no where near enough carers (particularly young people) so it's a job worth thinking about. If you stay clear of care agencies who stifle all the money for profit, the pay is very competitive (way better than minimum wage jobs for massive corporations). Also, where else do you get paid to go to the cinema, out clubbing or even on holiday? OK- not every aspect of the job is fun and games but the good times outweigh the bad times. It definitely might be something worth considering for your next job.

Bye for now!

Monday, 3 August 2015

Maintaining independence…

When you go from being a regular, able-bodied person to being disabled, there is a difficult transition period where you have to realise that you can no longer do the same things as you could before. I was lucky (my buzz word of the moment) in that my deterioration was gradual so I had years to come to terms with my condition. I can only begin to imagine what it feels like if you have an accident/get struck down with illness and face problems with your mobility overnight. It doesn’t matter if you are young or old; accepting that your body has changed is not easy.

However, there are companies out there such as Pride Mobility who supply devices designed specifically to help improve independence. They manufacture a number of useful products to overcome some mobility issues, ranging from electric scooters to powered wheelchairs; foldaway ramps to lift chairs. I have said before how shops and restaurants should get ramps that they get out when there is disabled customer, particularly if (for whatever reason) a permanent one cannot be built. I also know from first hand experience that owning a motorised wheelchair gives you a sense of freedom and greatly improves quality of life.

The other two products that I mentioned are not aimed at someone who cannot walk (like myself) and more for those who can walk but not far. Scooters are ideal if you want to save energy so that you are able to get out and go inside the shop. The Pride lift chairs are also great for those who can walk but find it extremely difficult to stand up from a seated position.  The reason I’m speaking about these aids is because sometimes you have to think about long-term care i.e. when loved ones get old and struggle with their mobility.

As the title of this post suggests, the way to feel at one if you like and not get bogged down by the fact you are disabled is to hold onto as much independence as possible. Even if your condition means that you have to use mobility devices to assist you in this.

Bye for now!

Wednesday, 29 July 2015

Lucky...

People are always saying how lucky I am when I meet celebrities or get given stuff and rightly so. I have been extremely fortunate in who I have met down the years and have even been in the presence of bonified legends such as Thierry Henry on more than one occasion.
In fact, at a Junior Gunner awards ceremony back in 2006, I was privileged enough to award the Frenchman one of his many accolades to which he gave me it back and told me to keep it.

Another amazing moment was when Tomas Rosicky picked me out of the crowd and gave me his shirt after a famous North London Derby victory in 2014.
My luck was well and truly in on both occasions. However, I have paid a massive price for my luck and I'm not talking money. I'm not too sure how lucky one can be if they're disabled. I personify the saying "You win some, you lose some" but unfortunately the bad far outweighs the good.

Having photos with famous people is one of the 'perks' if you like of being wheelchair bound. It's a bit like being able to skip queues at most places, getting 2 for 1 cinema tickets and having a parking permit for special places. They're all great schemes and definitely make my life significantly easier but none of them make up for me having this horrendous condition. Unfortunately, I did not have the choice but if someone said to me you can lead a normal, generic life not meeting any celebrities or have Friedreich's Ataxia (obviously they would have to explain what that was) but get concessionary rates on tickets, I would choose not to have a disability.

I would give up Rosicky giving me his shirt, Henry giving me his Player Of The Season award and meeting loads of other famous people just to be able to walk again.

I have also been told how lucky I am to get a council flat even though the fact is if I wasn't disabled, I would be able to get a job and save the money to move out privately. When you think about it, I'm really UNlucky that I am in a position where I have to rely on the  council to house me.

So, I am very lucky sometimes in who I meet but I was not when it came to drawing short straws in the gene pool. 

Bye for now!

Other pictures of me being lucky:














Monday, 27 July 2015

Remember me?

It's getting hot in here...
Probably not because it has been well over a month since my last post. What have I been doing that has prevented me from blogging? Well, I have been trying to sort out my flat and get it ready to move in. There is still an issue with security and a lack of fences but once this is resolved (hopefully soon), I’ll be able to fly the nest. I also visited most car dealerships in St. Albans and the surrounding area to try and find a more suitable vehicle for the Carony Classic. Finally, I have just got back from a delightful two weeks in Cyprus and as you can imagine, writing was not on the top of my ‘to do’ list.

That being said, I did take my keyboard out there but decided against doing any work because relaxing in the sun around the pool was far more appealing than using my brain. I knew that being near the equator, Cyprus would be hot and humid but the weather was even better than I was expecting. Not a single cloud could be seen during our 14 day, which certainly made a change from our rather wet experience in Italy last year. Also, there was an occasional breeze to make sure that no one was uncomfortably hot. It goes without saying that the torrential rain and colder temperatures in the past few days have come as a massive shock to the system.

Weather aside, I’m also missing the pool enormously. I say this every year but I must go swimming regularly now I’m home. Being in the water gives my legs that freedom they so badly crave. Although I still find them difficult to control, I can move my joints and kick them; something I obviously cannot do in my wheelchair. I used to be scared rigid of the water but now I will happily go in safe in the knowledge that a couple of flotation aids will stop me from drowning. I just need to keep my mouth shut; an art I struggle with unless I’m around women.

The villa itself was great too, as there were hoists this time which made transfers a lot easier and less hassle. The basement was a fully accessible self-contained flat with a kitchen and lounge so really, my brother and I did not need to go upstairs. It also came with a Wheelchair Accessible Vehicle so when we did go out for a meal in the evening, I could just be pushed in the back. However, I did miss riding shotgun in my Carony Classic. The chair is way more comfortable than my bog standard manual but I’m glad I did not take the £4, 000 chair because part of the NHS one was broken on the return flight.

Anyway, if you are looking a relaxing break in the sun and one or two of your party are disabled, I’d highly recommend Villa Carpe Diem in southern Cyprus, about half an hour from Larnaca Airport.

Don’t worry; you won’t have to wait as long as last time for my next blog post. I’ll be back on Wednesday because writing a new entry every day is pretty unrealistic and would be a promise I’d probably break. I’m going to aim to do three a week like Russell Brand (I used to find him a bit like Thrush but now I think he speaks sense and is quite funny like myself) does on The Trews.

Bye for now!

Monday, 15 June 2015

Key to the door…

Some of my regular readers may have noticed that I haven’t been posting much recently and that’s because shortly after raising the money for a Carony Classic and a FM hearing system (I really don’t know how I lived without both pieces of equipment before), I received some amazing news that I have been waiting for years to hear. The council have given me a flat, which, as you know, has been at the top of my wish list since I became an adult.  I got a taste of independent living during my brief stint at Uni and I enjoyed the freedom (albeit sharing a kitchen is not ideal). It was probably the best part of the whole University experience and was something I missed when I returned home.

I just feel like a child at home with my parents and I know it sounds cliché but I think moving out will help me spread my wings and develop as a person. I’ll be able to start doing what I want, when I want. My parents will obviously be sad see me leave (although I will only be 5 minutes away) but they understand that moving away from your parents is just part of life. When my dad was my age, he bought his first home so can appreciate the importance of having your own place.

Excited doesn’t even do how I am feeling justice but I’m also extremely anxious because nothing ever goes completely right for me (put the violins away). There is always a hitch/some sort of issue that spoils the party. I won’t be happy until I move in but when that will be; your guess is as good as mine. When I got the keys, the flat was unfurnished and although friends/family have kindly donated furniture, I’m still without essential items such as a fridge freezer and an oven. My OT also needs to order a new shower chair and wider bed so I don’t think my place will be ready for another month or so.

Anyway, that explains my absence for the most part. There is so much to sort out, from getting the best broadband deal to choosing the decorations for each room, sorting out my energy providers to getting the flat adapted to suite me (i.e. installation of a Clos-o-mat toilet and removal of lips on exterior door cills). Plus, the anticipation is proving a distraction so instead of writing, I am spending hours online browsing through different canvas art to go on my walls.

Bye for now!

Friday, 29 May 2015

Little by little...

As the 3rd anniversary of this blog is nearly upon us, I thought it was the right time to start getting reflective. Now I've assessed the impact of 'The Adventures of Wheelchair Boy' before and concluded that unfortunately, my posts don't reach as many people as a my own TV programme would  (hint, hint commissioners) so there seems to be no change. However this post has made me think about wider society and how attitudes towards the disabled have definitely improved in recent years. You can tell from my infrequent of late posts that life is not perfect and society still has a long way to go on a variety of issues but in the main, disabled people are STARTING to lose their invisibility cloaks.

The emphasis is on STARTING because (without sounding like an X Factor contestant) disabled people are on a journey to become equal and receive recognition from their peers. Sadly though, some parts of society are either too selfish and don't want to know or just plain ignorant which is no longer a valid excuse in 2015. Like I said though; things have definitely improved. Watching back Celebrity Wheelchair Challenge from 2003 makes it clear both how much attitudes have changed for the better in the last 12 years as well as highlighting that there are problems that won't go away.

The two examples that demonstrate the improvements/lack of in recent years are to do with Public Transport. The majority of buses are now completely accessible and have their own ramps.Whereas, the issue of obnoxious taxi drivers who will not pick up disabled passengers is which, I and probably all my regular readers are all too familiar with (as it's an issue I have raised a few times), still happens today. The fact I still have that problem 12 years after the show was broadcast clearly shows the treatment of disabled people is still not great and  one solitary episode cannot make  everything better..

I still feel Channel 4 or any channel for that matter who would like to tackle disability should use  the idea again but with a modern spin. It's a fascinating concept and would help to educate society about the difficulties disabled people face on a daily basis. Those inside the media bubble do not believe  factual programmes about disability work but I would strongly argue the British public are ready to be informed on the subject.

Bye for now!

Friday, 15 May 2015

This is also hear...


After getting the ‘Carony Classic’, the rest of the money that was donated/raised at the quiz night went towards a new hearing system. In actual fact, I had to use all the additional money to buy the two ‘FM receivers’ and the ‘Roger Pen’. Again, I thought I’d share a few pictures so you can see how your money has been spent (apologies that I look like a sinister wizard about to cast a spell in some of them).

I am very pleased with the acquisition as it sits in my ear perfectly and is much better than the old model I trialled at the University of Manchester. It is also very discreet and unless you come really close (one at a time ladies), you cannot notice it. Not that I’m image conscious…

The pen is good too as I can either point it in the direction of the speaker like a microphone or my carer can wear a lanyard around their neck and it will pick up their voice. I can always just lay it in the middle of the table if I go out for dinner (like tonight) and, according to the instruction booklet, it will pick up the voices of the people on my table. Fingers crossed anyway!

So, money well spent on both counts. I can now get in/out the car without standing and will be able to join in conversations when I’m in a crowded area now. Another massive thank you to everyone who contributed and has therefore improved my life significantly.

Bye for now!




Tuesday, 12 May 2015

It’s here…

Thanks again to all the generous pledgers who paid for my new chair!

I am pleased to announce that the ‘Carony Classic’ my friends and family (as well as some wonderful people I have never met) kindly bought me has finally arrived. As regular readers will know, simple transfers were becoming increasingly difficult because my condition is constantly deteriorating and I was even afraid to go out in the car in case I fell over. Now, I have only had this new system a few days but already fell much more confident as I know I do not have to stand at all. It means that if I want to go into town, I can without the stomach wrenching feeling that I might lose all dignity and end up on the floor like a drunk…AGAIN.

For those intrigued about how it works, I have took loads of pictures (see below). I must say it probably looks and sounds complicated but it’s not. After you get familiar with the system, it takes under a minute to get me in the car. Much quicker and safer than when I used to fall. The chair simply pumps up so that it is level with the vehicle, clicks into two rails then slides back and spins into a normal passenger seat position. It's honestly that easy once you know what you are doing.

My only regret is that I didn’t listen to mum and get the system months ago but what can I say? ‘Wheelchair Boy’ is as stubborn as Arsenal holding on to the Top 4.

Bye for now!











Thursday, 7 May 2015

Go vote...

'Wheelchair Boy' has voted so seriously, what is your excuse? You will all know from my last post how I voted but whatever your persuasion, please have your say before 10PM. Obviously, those who have been to the polling station already can ignore this 'call to arms' but those who haven't should STOP reading this post and immediately GO to your local school/parish centre/community hall. It will take less than a minute to put a cross in a box and, if you're sad like me, it will give you a lovely sense of satisfaction that you have done your electoral duty for another 5 years (unless of course the new coalition collapse).

See you when we have a new government, I'll do a proper post then :)

Bye for now!

Thursday, 30 April 2015

I’ve made my mind up, have you?

There’s a week left until polling day so all those who did take my advice and registered to vote now have seven days to make their minds up. Most people I speak to are completely blown away by the election coverage and do not know who to vote for. However, I do. I wasn’t going to divulge the content of my ballot paper (after all it is a secret) but the electorate seems so undecided at the moment so I thought I’d try to help. I have carefully considered all the parties and have concluded that Labour will be getting my vote come May 7th.

You’re probably all not shocked by that revelation because I’m quite left wing in my views and my family do not have much money. Most of you are probably also thinking that I am just following my dad like a moronic robot but that’s wrong because if I was, I’d be voting UKIP. I just think people should be independent and not be influenced by others opinions. As Scroobius Pip once said, “Thou shalt choose a political party based on their policies, as opposed to just going with whom your family has always supported; they are not a football team”.

If you reach the same conclusion as your parents, fair enough but you have a fully developed brain so use it. Don’t let it be shaped by another adult. You’re not a child anymore. This applies to what I am about to say. I’m not demanding that all of my UK based readers go and vote Labour next week. I just thought I would make a few points and explain why I have decided Ed Miliband is the right man to be Prime Minister in case anyone is interested.

Up until a couple of weeks ago, I felt like most young people. Apathetic and unsure who to vote for (as you know, I have always believed in the importance of having your say so my visit to the polling station was never in doubt). What was certain was that I would definitely not vote for the heartless Conservatives who make out people are disabled by choice, are worthless drains on society and should be eradicated. I would also definitely not vote for the spineless Lib Dems who now claim that they limited the Tories from being nastier but in actual fact acted as their stooges throughout this government.

As the campaign has heated up, I have been warming to Ed Miliband and feel that his passion to make this country fairer and balanced again is clear to see. Everything seems to be in favour of the rich and the poor seem to suffer because of it but he wants to change this. Yes, he looks goofy and has a funny voice but so do I. Hopefully you all think I talk sense most of the time (If you don’t, why are you even reading this blog?). What I’m trying to say is like I always say, don’t judge a book by its cover.

Personally, I believe the country’s future, as a whole will be much brighter if the outcome on May 7th is a Labour majority, not a minority one where Nationalists hold the balance of power. Not because Nicola Sturgeon and co. are dangerous (although getting rid of Trident DETERRENT is extremely risky) but because these separatist movements are even more selfish than the Tories. At the end of the day, we live in a United Kingdom made up of four countries. All joined up, not independent of one another so it seems a tad selfish to look after your own part of Britain and disregard everyone else.

Like I said, that’s my view but you can vote for whoever you like.

Bye for now!

Wednesday, 22 April 2015

Generosity wheeled the cat…

Before I begin, I feel must apologise for the cringeworthy headline above. It’s probably worse than ‘Let’s get quizzical…’ as far as embarrassing attempts at humour go. I do not even know what ‘Generosity wheeled the cat…’ means because, contrary to what I have suggested, this post is not about felines. It is however about how generous people have been to me over the past month or so.

When I first set up the Crowdfunding campaign back in March to raise the money needed for a new wheelchair transfer system, I did not think that I would get to the  £1000 mark by the deadline let alone the target of £3734. However, I was completely blown away (I am starting to run out of superlatives to describe how I felt) that people’s generosity took me past the aforementioned figure with over a week left.

As I mentioned in a previous post, my friend (Sophie Hudson) and I had already organized a pub quiz (I probably should describe it as ‘huge’ because of the sheer amount of people who turned up in the end) and could not cancel it because of the hard work we had put into securing a venue (Slug & Lettuce), getting a sponsor (SA Law), persuading companies to donate raffle prizes (see list below) etc. You probably will not believe this but the night raised a further £1148.31, which is incredible for one single event.

So not only did I raise enough for the ‘Carony Classic’ but with the extra money donated, I now can afford a ‘FM Hearing System’. Both pieces of equipment are vital and will improve my quality of life significantly. To think that just over a month ago I couldn’t afford either is truly unbelievable. I hope everyone knows just how grateful I am for all the support (thanks to those who donated and also to everyone who made the quiz a tremendous success last Thursday) but if you do not… THANK YOU!

Now that the fundraising is over, I have ordered the chair so I’m just waiting for the seat to be delivered (I will upload a picture when it’s here) and then hopefully the mechanics will be able to fit the system into my car without a problem. Hearing aid wise, I have seen one online but will be able to weigh up my options when I go to the hearing aid shop in town later this week.

Bye for now!

Thank you to all these wonderful companies/individuals who donated raffle prizes and in the case of SA Law, sponsored the evening.
•    John Lewis
•    San-Rizz
•    Relish Real Burgers
•    Côte Brasserie
•    St. Michael’s Manor
•    Everyone Active
•    Alban Arena
•    Hob Salons
•    Lush
•    Greys Hair and Body
•    The Entertainer
•    Wilde About Hair
•    Millie Hudson
•    Slug & Lettuce
•    SA Law

Monday, 20 April 2015

Put a cross in the box…

I mentioned the importance of voting in my second and final upload when I dipped my toe in the Vlogging pool last month. Amidst the obscene swearing and cringeworthy (but spot on) impression of a Russell Brand follower was the serious message that everyone, who is entitled to, should have a say in the 2015 United Kingdom General Election. Polling day is not actually for another two-and-a-half weeks (May 7th) but the reason that I am posting now is that the deadline for UK citizens to register to vote is today at midnight.

Do not worry, I am not going to do what seems to be popular over the past few days and dictate to people who are disenchanted with politics to register on the electoral role (eventhough I sort of did in that second video). People seem to forget we live in a free country so if someone decides that voting is a waste of time and they do not want to participate in the process, it’s their prerogative to abstain. No one person can say whether that makes them good or bad. However, I have to be honest and say that not voting is quite a selfish act.

Not only are the non-voters insulting the legacy of those brave people who sacrificed their lives for democracy (the two World War’s) and the ability to vote (the Suffrage movement), they are also consigning the most vulnerable members of society like myself to attacks from a ConDem government. Hardly fair is it? I am not a die-hard supporter of any party and know full well that a coalition of Labour and SNP could be equally as dodgy. That’s why I think getting the 34.9% of the country who did not turn out back in 2010 to vote is so important.

That is over a third of the country who just do not bother to go to their local polling station, simply put a cross on a piece of paper and pop it into a ballot box.  Even worse is the knowledge that the figure of those who do not vote could increase thanks to the revolutionary nonsense spewing out of the mouth of morons like Russell Brand (who is slowly becoming everything he hates). The main argument from those who reject their right to vote is that all the parties are similar and the only change is the colour of their ties.

The answer though is not to turn your back on politics, it’s to become more involved. If you want a real revolution and proper change, how about all the abstainers actually get together and vote for an independent candidate. For example, 11.9% of the electorate voted for others (outside the main three parties) at the last General Election so if the 34.9% of ‘wannabe Brands’ voted for different to the norm, there would be no more Cameron, Clegg and Miliband hogging all the power. Those who did not vote last time could have a pivotal say and ruffle a few feathers in Westminster.

If the whole concept of registering to vote is news to you, I would like to know what rock you have been hiding under? Seriously though, it is not too late (unless you’re reading this after the 20th) so do not hesitate clicking this link: https://www.gov.uk/register-to-vote. The form is simple and will take no longer than 5 minutes to complete. Just have your National Insurance number at the ready. Even if you have no intention of voting, just register in case what I have said does sink in and you change your mind by the time the election does come around. Better to be safe than sorry…

Bye for now!

P.S.

Apologies if this post has been boring and has turned into a rant in certain places but everyone seems to be having their say on the subject of voting so I thought it was ‘Wheelchair Boy’s turn to air his opinion. If I have not convinced you, so be it but remember that next time you’re moaning about almost anything (except the weather because that’s out of the government’s hands).

Thursday, 9 April 2015

Let’s get quizzical...

For the past month or so, my amazing friend (Sophie Hudson) and I have been organizing a quiz night to help raise funds for the new wheelchair transfer system that I so badly need. As you will know if you’re a regular reader, the ‘Carony Classic’ costs £3734 in total and I thought I would not even get close to the target figure so I’m utterly astounded that I have reached my target with 10 days to spare. The fundraising event at the Slug & Lettuce in St. Albans next Thursday will still go ahead as planned but any extra money raised will go towards another expensive piece of equipment I need; the FM hearing system (that I have spoke about in previous posts).

I knew that it cost a fair bit because the NHS are not prepared to fund it but I have only just discovered that the price of the whole system is £1300. Unfortunately, this is more proof that everything is ridiculously priced when it comes to disability. I’m not suggesting that I will reach the stretch target in 10 days but I’m just pointing out that any money made from hear (get it?) on in will go towards the FM System. If you planned to donate to the chair, I would very much appreciate it if you now chipped into my hearing aid pot: http://www.crowdfunder.co.uk/carony-classic-wheelchair-system

If you do fancy your chances in a quiz, want to win some great raffle prizes or would like to meet the famous ‘Wheelchair Boy’ visit the Facebook event for more information: https://www.facebook.com/events/776911342386542/
Or if you don’t do social media, please read this invitation:

Bye for now!

Tuesday, 7 April 2015

Stick to the writing…

You know me! Get an idea in my head, run with it (not literally obviously) for a little while then decide it’s not working out as I had hoped and pack it in. I’ll try ALMOST anything but if it’s not going swimmingly, I’ll simply knock it on the head. It’s not that I give up on things easily, I just believe that life is too short to do stuff that causes you stress. Sometimes in life you have no choice but to face stress front on and find a way to overcome it/deal with it but my mantra is if there is an option to eradicate stress completely from your life, grab it with both hands.

So that’s why I have decided to call it a day with my YouTube channel after two whole uploads.  I know some people enjoyed the first one, especially as I didn’t swear, but I wasn’t enjoying the making process and found it quite infuriating. I know you are all probably thinking, “How can shooting and editing a video be stressful?” and that is exactly what I would’ve thought before. However, it’s surprisingly more difficult than it looks. For every one clip, I had to do 20+ takes because I kept making massive mistakes. Even then, what I said wasn’t coming out perfectly. Also the audio was out of sync with the footage, which made editing tricky and time consuming.

The only good thing about this little ‘Vlogging’ experiment is that it has illustrated (for those who have not had the privilege to meet me) that I find speaking quite hard. It’s not just that I find the physical act of talking tiring and often run out of breathe mid sentence but I as well have difficulties verbalising my thoughts. There seems to be some sort of mental block that prevents me from getting out my words and forming intellectual sentences. I seem to go off on sweary rants and don’t present myself well. When I write, I think you get a preferable version of me and more people seem to like that.

Bye for now!

Thursday, 26 March 2015

Video killed the writing star...

Maybe the word "killed" is a tad over-dramatic because I am going to continue to write on this blog but seeing as my posts are few and far between at the moment, I have decided to set up a 'Wheelchair Boy' YouTube channel. Whether the world is ready to see or hear Wheelchair Boy is yet to be seen but I thought I may as well try. If it turns out no likes my videos, I'll have to stick to the writing. I have only done one upload so far (although a few other videos such as my SkyDive can be found on the channel) but after watching it back, I've realised I'm extremely cringe-worthy so will understand if people can't bare to watch.

I put my first vlog up earlier today so I hope you enjoy it (feel free to laugh at me)
https://www.youtube.com/watch?v=sa3abcuDecM I'm not sure when the next upload will be live but subscribe and you won't miss out (my next video will be pretty awesome even if I do say so myself).

Also, while I'm on here, a quick update about the fundraising.Thank you again to every single one of my 76 backers who have pledged an incredible £2370 (63% ofs the target). The deadline was going to be a week today but luckily I have managed to extend the end to the 19th April because of a quiz night my friend and I are organizing. Details will be announced shortly. Please continue to share this link: http://www.crowdfunder.co.uk/carony-classic-wheelchair-system because I won't rest easy until I've reached the 100% mark and I'm still not convinced I will reach it.

Bye for now!

Friday, 20 March 2015

It’s not contagious…

Last week, I went to see Celebrity Juice being recorded as an apology for being turned away from Reality Bites back in February. I love the show but it was 10 times more hilarious being in the studio audience than sitting at home watching it on the box. “How is that possible?” I hear you yell! Well it’s because a lot of what is said is too obscene to broadcast (I can’t even repeat the story Gino D’Acampo told) which brings a feeling of exclusivity.  Also, Leigh Francis (Keith Lemon) is a very good presenter so there is no waiting around at the end for him to do pick-ups. It is basically a continuous three hours with hardly any breaks.

Like Jeremy Clarkson, Celeb Juice is similar to Marmite. Some find the content repulsive and vulgar whereas others, like me, can’t get enough. Yes I have a filthy sense of humour, which is probably why I enjoy it so much, but I also remember that it is just a TV programme there to entertain an audience and should not be taken seriously. At the end of the day, Keith Lemon (who makes quite a lot of misogynistic remarks) is a character played by Leigh Francis. A lot of people seem to forget that. Fair enough if you think the show too explicit but I don’t agree with those who criticize it forbeing sexist and objectifying women. Watch it for the comedy or if you don’t find it funny, turn over.

Anyway, I’m not here to post about the show (eventhough I clearly got carried away) but instead want to discuss something else that happened to me before Celebrity Juice even began. The warm up comedian told everyone to shake the person behind him or her’s hand. There was a middle-aged woman sat in front of me. I put my hand out ready to shake. She turned laughing, saw I was in a wheelchair then quickly turned back, withdrawing her hand so not to touch me. The worst thing is I saw by her panicked facial expression that she must have honestly thought that you could catch Friedreich’s Ataxia. It then dawned on me that most women must think touching me makes them disabled.

The first episode of the brand new series was broadcast on Thursday evening and I thought I might be in it because they got my entire row to sign disclaimer forms. There was a mini game where guests had to shake off plastic bags, which were attached to their bodies and had toilet rolls in. I was down the front so when Jimmy Carr flung one off, it flew up and fell in my direction. I half turned away and covered my face. Gavin said it reminded him of the girl in the wheelchair who gets hit in the face with a Frisbee in Inbetweeners (except I didn’t cry). Obviously, the producers of Celebrity Juice thought it would be inappropriate to show a slightly distressed ‘Wheelchair Boy’.

Bye for now!

Friday, 13 March 2015

Broken record…

There are some subjects that I keep going on about, a bit like a broken record, and that's because it means a lot to me. For example, I have written numerous posts explaining how the majority of football grounds treat disabled people much worse than other ‘normal’ fans (links below):
•    http://theadventuresofwheelchairboy.blogspot.co.uk/2014/08/no-disabled-fans.html
•    http://theadventuresofwheelchairboy.blogspot.co.uk/2014/03/level-playing-field.html
•    http://theadventuresofwheelchairboy.blogspot.co.uk/2012/11/in-away-end-sort-of.html
•    http://www.transfermaster.com/blog/view-post/I-am-a-fan-too

The situation has been partly resolved by certain clubs such as Crystal Palace but it’s nowhere near perfect. That’s why I’m taking photos of the various away grounds I visit this season and compiling a detailed letter to send to those in charge of the beautiful game. Journalists from the BBC and the Guardian (David Conn actually interviewed me last month for his article: http://www.theguardian.com/football/2015/mar/07/disabled-fans-premier-league-grounds) have done brilliantly to report on the matter and highlight the issues so that people who are not disabled football fans realise it’s not acceptable.

However, I believe hearing directly from a downtrodden football fan is more likely to make the FA and Premier League listen. As with a lot of things in life, I’m fed up with the constant rhetoric of “access must improve”. They are empty words to me and I will not be happy until actual changes take place. I want those in charge of the game to step in and force clubs to resolve any issues. I have been taking pictures (you can see a few below) so that is perfectly clear why I’m disgruntled.

I no longer accept the response from a lot of clubs including Liverpool that the “ground is old”. That is a broken record! Yes, stadia such as Anfield were built decades ago but with the obscene amount of money in the modern game, any club in the English top flight can easily afford to make the minor adjustments to improve disabled facilities. I’m not asking for all old stadiums to be knocked down and replaced by state of the art architecture because I know that is an unreasonable suggestion for smaller clubs but just small adaptations such as a raised viewing platform for wheelchairs.

Another broken record that is being repeated all the time is me begging for more people to pledge to my crowdfunding campaign (here is the link again if you haven’t seen it yet: http://www.crowdfunder.co.uk/carony-classic-wheelchair-system). The page has only been live for just over a week and I’m pleased to report that 31 backers have donated an incredible £1105, which is 30% of the overall target figure. I cannot believe how supportive family, friends and total strangers have been since I begun. I am absolutely overwhelmed but do not want people to stop giving. I accidentally put an irreversible deadline on so there is only 20 days left, which seems a lot but time will fly.

Bye for now!
I couldn't see our second goal against Man City...
Didn't really see much of our winner at West Brom either...
My view at the Emirates is probably the best...

Thursday, 5 March 2015

New car seat…

The most frustrating part of having a degenerative condition is that your body is constantly deteriorating. I am totally aware of these changes but there is nothing I can do to prevent my Friedreich’s Ataxia from getting worse. Back in June 2013, I got a Kia Venga and was really happy with my new car. I still love Arsène (as my dad calls it) but there is a problem with the way I transfer. This problem is nothing new but I have buried my head in the sand for too long and have only recently accepted that I need to address this issue before either me or my carers get seriously hurt.
I don't normally have my parents on hand to assist so the transfer is even more difficult than it looks...

I currently have a turnout system so the passenger seat swivels out to the side and I move across into my wheelchair. That used to be fine because I could (with the support of the car door) stand, pivot and then smoothly sit down. Now my legs are weaker, I end up basically flinging my body across and hoping that I don’t hit the floor. Increasingly, I am ending up on the deck and have to rely on passers by to lift my hefty frame up. This happened twice today; once in town and once on my driveway. Luckily, there were people around to help on both occasions, otherwise my carer and I would have been stuck for ideas.
The system I have at the moment....
However, there is a simple solution but I cannot afford it. The system is called the Carony Classic and, although the basic price is roughly £3080, the add-ons mean that it will end up costing £3734. Unfortunately, I do not have that sort of money so have decided to set up a donations page in the hope that people will be able to assist me. The site (www.crowdfunder.co.uk/carony-classic-wheelchair-system) is easy to use and will make sure the money is given directly to the cause. I understand that times are hard but the floor is often harder. But on a serious note, I would very much appreciate if you donated whatever you can.


The Carony Classic will completely eliminate dangerous transfers like this!

I will give frequent updates on how the fundraising is going so make sure you check back to the page regularly (although I will share any news on here of course). You’ll also notice on the site that there are rewards if you give a certain amount so be sure to check them out!

Bye for now!
I'm writing this post from the car because I couldn't get out...

Monday, 2 March 2015

No room at the inn...

Recently, as you may have seen if you’re privileged enough to be my Facebook friend, I have been going to watch various TV recordings thanks to Applause Store; some being more problematic than others. Britain’s Got Talent was brilliant as my brother and I got to sit in a box (I don’t know if it was royal but Ant & Dec bowed in our direction when they came on at the beginning) to watch the auditions which this year were held at the Dominion Theatre on Tottenham Court Road. On Friday afternoon, I made the short trip to Elstree Studios to watch Virtually Famous being filmed and that too went without a hitch.

A perfect view of the judging panel and stage...
In contrast, Top Gear (which is surprisingly really difficult to get tickets for) was just awful live in my opinion. I’m not a massive car fan nor do I think all the ‘banter’ on the show is made in good taste but there are parts that make me laugh and that’s why I made the 2 hour journey down to Guildford a couple of weeks back. However, the final cut that makes it to the TV the following Sunday is much more entertaining than sitting in a cold air hanger with a restricted view of the presenters and watching clips of cars while you wait for Jeremy Clarkson to take yet another cigarette break. I recommend it to no one!
What a view: Worth the trek down to Surrey...
Worse than that though was Reality Bites (a new panel show hosted by my favourite TV personality Stephen Mulhern), which I can’t even comment on as we didn’t even get in. It is filmed at the London Studios on the South Bank so we got the train from St. Albans to Blackfriars just before because, as I’ve explained before, getting a wheelchair on and off a packed train can be difficult. Also, the train is slightly cheaper off peak. After eating, we arrived at 17.45 (one hour before doors as is the standard procedure for disabled audience members) and spoke to two girls in Applause Store jackets. One of them told us to wait in the main reception until they were ready.We did but as it was getting closer to 18.45, we thought she'd forgotten us.

My brother spoke to a runner who kindly agreed to escort us through the building to the studio. Two women greeted’ us at the doors with confusion and were actually quite hostile/rude when they realised we weren't production guests. Then, the girl from Applause Store came along and told us that there were already two wheelchairs inside so there was no more room. It had been a wasted journey (although the food at Azzuro was lovely and made the trip worthwhile).

My sister and carer began to argue (obviously I was annoyed but I prefer to express my anger in the written form) because, like they pointed out, we were not told that there were only two wheelchair spaces at the recording and we would possibly not get in. If we had known from the start, it would have been easier to take and we could've perhaps gone to the theatre. Instead of that, we wasted our evening waiting around like fools. Eventually, the girl admitted that she had made mistake and offered to upgrade my membership to priority as a means of an apology. Not the greatest sorry ever but after writing a letter and getting nowhere, I realise it’s better than nothing.

I saw the aforementioned girl on Friday. She patronisingly asked if the emergence of the sun “had put me in a better mood?” as if the whole Reality Bites situation was my fault. I laughed and bit my lip…

Bye for now!