Taking it into my own hands…

Today, I was in the Herts Ad (page 6) complaining about those pesky speed humps down my local park. Again I hear you cry! Yes, not because I’m a media whore (although some would argue that is the case) but to demonstrate to the council that I mean business and make local people aware that I’m starting a campaign on the matter (hopefully encourage other people, who have had similar trouble to come forward). I’ve already got Baroness Tanni-Grey Thompson on board and that is just the tip of the iceberg. I feel passionately about this as the council have turned a perfectly accessible path which was used by everyone into an inaccessible route trying (and failing miserably) to slow cyclists down.

Councillor Julian Daley thought he was being clever and tried to make the article sound nonsense by saying ‘I am quite satisfied there is a problem and the officers need to come up with a solution’. I’d like to thank him for adding that because it perfectly illustrates my point that the council are ‘glossing over’ the problem. Julian said they are trying to find solutions but that is clearly just a way of buying time and hoping that I’ll quiet down after a while. I can safely say that whatever they suggest will have Sustrans (a cycle charity) firmly in mind because keeping them happy is far more important than the welfare of a local, disabled resident.

I know Julian won’t want me to put this in the public domain but I feel people should know. On Tuesday, I received an e-mail informing me that Cllr. Daly had urged that ‘any negative press publicity in the next 2 weeks will not be helpful’. I’m afraid that little attempt at suppression and controlling media output didn’t work. Unless I’m mistaken, Great Britain is a free country. Or has Julian Daly forgotten that? His fragrant disregard for what the electorate thinks, emphasised by his final statement of ‘his opinion is his opinion’ (patronising much?), suggests that he is out of touch with the whole idea of democracy and doesn’t want to listen to the public who put him in power.

If any of the councilors didn’t like my article in the local press, they won’t like it when I start calling in my contacts. If there is one set of people the media dislike, it’s politicians what with Leveson and the Royal Charter. So, they will take little persuasion. Watch this space!

Mark my words; I will have the last word on this issue. They either remove the humps now and shut me up or face a blistering campaign, which will last until the ‘waves’ are removed. Either way, it’s the same outcome.

Don’t mess with ‘Wheelchair Boy’.

Bye for now!

Denial…

Yesterday, I spoke about how I now accept my disability but that hasn’t always been the case. This denial has had many adverse affects on my life such as confidence issues. It wasn’t overnight or anything but since leaving school last summer, I’ve become more mature and feel life is better from a personal point of view. It was almost as if I was living a lie for years because I failed to come to terms with having Friedreich’s Ataxia. Now, I’ve took the handbrake off (to steal a phrase from Arsene Wenger) and can move forward.

Being 9, I didn’t really understand fully what the diagnosis meant (that’s probably quite patronising to the younger version of me) apart from the fact that I’d end up as a ‘Wheelchair Boy’ in the future. Even as I grew up, I still didn’t grasp the concept of me being disabled. It’s not that I completely buried my head in the sand; I just couldn’t for the life of me accept the reality in all its entirety. On one hand, I realised I needed a wheelchair yet would still get out and move into a seat (just to appear normal) even though there was a serious danger of falling.

Another example of me rejecting the truth and in hindsight, acting in a ridiculous manner is my headrest on my electric wheelchair. I feel embarrassed for saying this but I used to ask my parents to take my headrest off when I got out of the car because it ‘looked too disabled’. What does that even mean? I am disabled for crying out loud! I just didn’t want to make that concession. It’s sort of like being an addict; denial only makes life harder but once you admit the problem to yourself, everything else becomes easier.

I’ve been able to think in detail about my condition and rationalise what being disabled means for me personally. This in turn has meant that I’m ready to take on the various challenges that are thrown at me because I’ve finally settled a dispute in my mind.  This is one less thing for me to think about and obsess over.

I know that I’m disabled and that’s all that matters. If people don’t like that, they can jog on (something I’d like to do but have accepted is now impossible).

Bye for now!

My family…

I’ve always been bemused as to why my family found it (they still do)the most difficult to accept that I had a disability. You’d think that with all my problems, I’d be the one who struggles with getting my head around it. But it’s the complete opposite. September shall be the 10^th anniversary of my diagnosis but since then, I’ve been the strongest member of the immediate family apart from my little brother who keeps himself to himself. This has always been a mystery to me but something that was said on the radio a few weeks back provided a logical answer.

Steve Evans is not a famous name but it should be. At the moment, he is battling with terminal stomach cancer. Unfortunately, the cancer is winning and his time is running out. Steve is an inspiration because of his light-hearted and humorous personality, which shines through even though he is aware of his probable fate. I heard him on Richard Bacon’s show (yes, I’m only 19 and listen to BBC5L in the day) in May talking about how life changed since receiving that dreaded news. Although disability is nowhere near as bad as cancer, I could empathise with all the points he was making.

Apologies but I don’t have the direct quote because I can’t remember the precise words.  However, I can paraphrase and tell you the general gist of what he said. Basically, he has found it easier to come to terms with because he is the actual one with the cancer. For example, his body getting tired and feeling the need to get more sleep is just a fact of life that he has got used to. Close family and friends are the ones that have been hit the most. They have to witness the deterioration of someone they care about. It’s harder to deal with a person you love in pain rather than yourself.

This applies to me as well. Obviously, it’s not been plain sailing but the transition from walking to using a wheelchair full-time has been relatively easy from a personal point of view because I had got used to the idea. My family have had the slow torture of witnessing my gradual demise and they must feel so hopeless. I am in control to deal with any problems, which makes things easier for me but being passive in the audience watching Ataxia strike your son/brother must be horrific.

This is a bit of an emotional blog because I           am exposing my intimate feelings (something I rarely do) but I just wanted to let my family know I’m sort of glad I am the disabled one. Ridiculous as that sounds initially, it would be harder to look on and see a loved one deteriorate. In a way, I’m being quite selfish because it all comes back to me and what I want.

Bye for now!

We’re all going on a summer holiday…

Great news! I’ve finally booked a holiday. CELEBRATE GOOD TIMES, COME ON. As you can see, I’ve been in such a good mood ever since it got finalised earlier this week. Getting away is a pretty trivial part of life to most people but to me, the 7-year wait for a trip abroad has felt like an eternity. Hopefully, this will signal the future ending of a few other long waits such as Arsenal winning a trophy and me getting a girlfriend but time will tell.

Where are we going then? That’s the best part. After weeks of searching the internet, I found a villa, which catered for all my needs in Moreira (a town situated about an hour from Alicante airport). Now, you’re all aware how much I love nostalgia and this is partly why I liked this place. When I was younger,  my family always used to go to that part of Spain every year so the place is full of memories. The good old days when I could walk, drive go-karts and even sing in Karaoke bars. I’ll be able to see how the area has changed and if any of it is how I remember it. I can’t wait.

Like I’ve said before, we couldn’t just book up a place to stay and hope for the best. I had to make sure it fitted my needs with an accessible bathroom (a wheel-in shower is a must for Mr Clean Freak over here). It obviously did. And was on the ground floor so looked suitable for wheelchair access. The added bonus is that the pool has a lift so I’ll be able to buy a rubber ring and float in there all day. It will be absolute bliss if the weather is good. I know it’s summer but you can never tell.

I just thought I’d tell you in case you’re worried about my whereabouts because I’m not going to blog poolside. However, it should provide me numerous interesting subjects to post about when I return. Don’t worry, I’m not going too soon. You’ve still got to put up with reading my thoughts for a few more weeks. No respite yet.

Bye for now!

Confidence…

As you have read lately, I’ve become more forthright with my opinion and less afraid to speak out. I tend to say what’s on my mind and don’t hold back as I’ve now realised that being open is the only way to get on in life. The old me was too conscious of what others were thinking and didn’t want to be too confrontational. I’d be worried about how my voice sounded so I just tended to stay quiet. There has not been a total transformation of my personality as I’m still shy and nervous in certain areas of my life such as meeting girls (I think will be the case forever). However, the new me won’t be messed around anymore.

The secret to my new found confidence has a lot to do with a change in mind-set. Depressing as this seems, I tell myself that everyone thinks you’re a retard so there is nothing to lose. That way, I can speak freely without worrying about what I sound like in the hope that people will realise I’m a normal person after having a conversation with me. Also, a ‘Wheelchair Boy’ speaking up would catch people by surprise because society doesn’t expect disabled people to have views, let alone be able to express them in the way I do.

Take when I visited Blue Inc last week as an example. Normally, I would have smiled at the fairly attractive girl behind the till and wheeled out without saying anything. I don’t know why. Maybe it would be me sub-consciously attempting to look good. Whatever the reason, supressing my outrage just to impress a woman is ridiculous. So, I asked to speak with the manager, which made me feel better. Even if nothing comes of the complaint, at least I know I’ve not kept the issue locked up inside.

If I had just sat back, grumbled under my breath and not followed up Southampton Guildhall about the wheelchair positioning, I would not have got complimentary tickets to see Wiley in September. I’m not saying you complain and get free stuff but just that sometimes in life, a positive can come from a negative. Of course, the main aim is to raise awareness because if people don’t know about a problem, it can’t be changed. However, you can’t live in fear of saying what’s on your mind because the result could be a good thing.

Bye for now!