Friday, 28 June 2013

New wheels…

Apologies to those who were eagerly expecting a post yesterday. My excuse is, as the title suggests, I picked up my brand new Kia Venga in the afternoon and got carried away in all the excitement of owning my first baby. Although I can’t drive (and do not have the inclination to ever do so really), signing for the car made me feel grown up because it is the first object that I have had full ownership of, without my parents involved. This is already apparent because I’m so conscious of dirt or marks. People have said that won’t last but it most definitely will. You all know what a clean freak I am and will keep it as new looking as possible. So, let that be a warning to anyone who uses my car. Respect it or you’ll have an angry ‘Wheelchair Boy’ to deal with.

Being one of a kind, it is only natural that I have a car that is slightly different to the norm. The main change is that the passenger seat has been adapted so that it spins and slides out (see below), making transfers easier for me. This is much safer now because before, I used to climb into the big van when travelling a long distance. It’s also more comfortable and I can speak to the other passengers sitting at the front. The only downside is if I go away for the Arsenal with the family, my dad will be confined to the back seats like a child. I’m not that guilty though because it is extremely spacious, I checked before purchase.

We are having a few teething problems with the seat but that will be resolved with time. There is just a specific way the chair pivots into place but once everyone understands, a transfer will take no time at all. Then, get my carer to gently (DON’T SCRATCH IT) place my wheelchair in the boot and away I go. That is the great part and the reason why I decided to buy a new car. I no longer need to wait for my parents to take me places. I can spontaneously wake up and decide to go to Southend, for example.

It’s not just a car. I’m getting a newfound sense of freedom to go almost anywhere. Now to get a sports wheelchair so I can push myself independently around the places I visit.

Bye for now!

Wednesday, 26 June 2013

I won…

Some good news for once my dear readers. All my moaning about the ridiculous speed humps down my local park has not been futile as the whole issue has hopefully (if they don’t go back on their plans) been resolved. CELEBRATE GOOD TIMES, COME ON!

I’ll just do a quick re-cap like on a television programme. Basically, my brother had initial reservations about the ‘Waves’ last summer, before they were even built. However, his protestations were ignored and the planned work went ahead. The council assured us that the local disability group had been consulted but this later turned out to be a tick-box exercise. Back in April, I was making my way back from town in my manual wheelchair and upon reaching the first bump on the hill, tipped right back so I was laying on the ground. Luckily, I escaped without injury but it shook me up so I’ve been vigorously complaining ever since.

Various members of the council have met with me and none of them have gave satisfactory answers. That is why, only last week I am an in the Herts Ad threatening a campaign (see here: I was going to get the ball rolling this week until Tuesday evening. Four councillors wanted to meet with me to discuss plans and suggest a way to move forward. I really doubted their solution would be suitable but went along with an open mind. I thought that any adaptations would be made with the sole intentions of keeping Sustrans happy and plastering over my complaints.

Being young, I don’t really admit when I’m wrong but thankfully, this time I was. They unveiled the plans to remove the humps on the pedestrian side and inside, I sort of had a hallelujah moment where I thought common sense has finally prevailed. I did question why they didn’t do that in the first place but a lot of politics doesn’t make sense if you look back on it so I just accepted they had mucked up.

I am very proud of this result because if I had stayed quiet, nothing would have been done to fix the problem. The outcome has vindicated my arguing and the number of newspaper articles. ‘Wheelchair Boy’ did get what he set out for and it does give me the confidence to challenge other issues that arise in my life. Just because I am disabled, my voice will get heard one way or another and this is evidence.

Bye for now!

Tuesday, 25 June 2013

Watch my SkyDive...

Most of my loyal readers will be aware that back in the summer of 2010 (feels like yesterday), I done a SkyDive to raise money for Great Ormond Street Hospital. If you didn’t know this, here are a couple of posts I wrote last year about the jump:
I just read them and not being arrogant but my style of writing has certainly improved over this first year of blogging.

Anyway, back to the SkyDive. As I said, the whole experience was pretty indescribable so I thought I’d upload the video I made. The facial expressions perfectly convey all the emotions I was feeling where words alone wouldn’t be adequate. Some have already seen this as I gave out loads of DVD’s and had a party to thank all my generous sponsors. However, there are some who have literally waited over three years to see this (apologies). Obviously, those who don’t know me personally haven’t watched this.

So, enjoy:

I hope it works properly because I’ve had problems with copyrighting. Apparently, the eclectic mix of songs I chose is owned by third parties and can’t be played in certain countries. I’ve acknowledged that fact so hopefully it works fine now.  Also, the video doesn’t work on mobiles so you might have to wait until you can get on a computer.

Bye for now!

Monday, 24 June 2013

Keeping my head up…

This isn’t going to be a pep talk about how everyone should remain positive in life because I realise that would be tedious and untrue (everyone can’t be happy all the time). Recently, it seems that all my posts have been very Brave heart in style and I’ve been using provocative language to ‘really get the people going’ on subjects that mean a lot to me. Today,  you’ll be glad to know I am refraining from emotional metaphors and will be literally speaking about my need to look up more.

I used to blame my Scoliosis (curvy spine) for the fact I keep my head down all the time but now I have a metal rod in my back, that excuse doesn’t work. My family have been saying it for ages and it’s something I am trying to work on. However, it’s proving difficult to change my natural tendency. Looking towards the ground has become a habit ever since I began using the wheelchair full-time so changing the way my body behaves will take time and effort.

Granted, me being lazy plays a significant part because I can’t be bothered to raise my head. Also, I have to look down to avoid ridiculously placed obstacles or so I don’t hit people’s ankles (it’s usually their fault). Another factor though has been my personality. I’ve always gone through life not wanting to be noticed and staying quiet, thus keeping my head down. This newfound voice I’ve been developing of late might hopefully signal a change in body language too. No one is ever going to take seriously a ‘Wheelchair Boy’ who goes around with his head facing the ground.

That brings me on to an issue that has plagued me all my life: not being able to sustain eye contact during a conversation.  My dad is to blame. Growing up, I always thought he was being pretty rude when talking to people but now, I do exactly the same. The worst thing is I recognise the problem but there is nothing I can do. Not being sexist but I find it easier with men. Even if I’m not attracted to a woman, I don’t feel comfortable engaging in eye contact. Part of me worries that she will think I’m mentally undressing her (because I’m a perverted young man) and the other part of me doesn’t want to appear rude so I end up playing some weird game of head tennis (being topical because It’s Wimbledon).

I just thought I’d tell you all in case people start talking to me and think I’m being rude/off. It’s just another one of my confidence issues that I’m slowly but surely addressing. Not only will keeping my head up help to make me look a tiny bit more normal, but it will also help with problems my condition brings such as my speech.

I can accept Friedreich’s Ataxia is part of me but I’m not going to let other genetic faults such as not giving eye contact dictate my life. I am my own person so can control and change that part of my make up if I put enough thought into it.

Bye for now!

Friday, 21 June 2013

I get what I want…

In case my blog last night (it was quite a late one so here’s the link if you missed it: didn’t make it clear enough, I am one determined ‘Wheelchair Boy’. Typically, someone with a disability would mope around and feel sorry for themselves (rightly so considering their plight) but not me. Whatever I want, I end up getting but that normally means a fight. Not physically, either written words or verbal exchanges. I used to lay down and not bother but now I know what good can come out of it, arguing my corner is something I’d like to do more often.

I’m particularly proud of the outcome of a minor dispute earlier this week. The background is my phone kept freezing (It’s a Blackberry so no surprise there) so after the Newcastle match, I took it into the Carphone Warehouse to see if it could be fixed. They said it was still under warranty so could be sent off for repair. Annoying, as it was to be stuck with the most basic of handsets for a week or two, I accepted and left the shop with my top of the range Nokia.

About 10 days later, I received a call telling me my brand new Blackberry was ready for collection. My sister went to pick it up and they gave her a new phone under a totally different name but the man reassured her it would work. It didn’t. When I went to use it that evening, I noticed there was no signal. I thought it might have been my house (famous for being a black spot) or perhaps the EE server was down. However, the signal error persisted so I got my sister to take it back.

Carphone Warehouse recognised that I was given the wrong phone (it was locked to an Orange sim) so had to send it away. Again, I was without my expensive Blackberry and to rub salt in the wound, received my monthly bill of £26 to use the services. When I was eventually given a working phone last Friday, I complained at the fact that I didn’t have the phone for almost a month yet still had to pay for it. I was given a number to call but when I phoned, they told me to e-mail the query. 

I ended up calling again because the answer was unsatisfactory and completely missed the point. This time, I was angry and wanted some money to come out of my complaint. The woman must’ve heard the distress in my voice so to avoid an argument; she offered me the £26 cheque. I politely accepted. Some people might say my silence was bought but my reply would be that’s what I wanted and that’s what I got.

While it may be small money, the reason I’m proud is that it illustrated my determination. I was knocked back a few times but followed the complaint up and got a little bit of extra pocket money for Spain. Also, it can act as a lesson to show how ‘Wheelchair Boy’ continues until he gets what he wants.

Bye for now!