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!
Thursday, 26 March 2015
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!
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!
• 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!
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| I couldn't see our second goal against Man City... |
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| Didn't really see much of our winner at West Brom either... |
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| 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 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.
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.
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 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.... |
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| 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.
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!
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!
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| A perfect view of the judging panel and stage... |
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| What a view: Worth the trek down to Surrey... |
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!
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