Still disabled…

Unfortunately, there is no cure for Friedreich’s Ataxia yet. I will be disabled for the rest of my life. Obvious, right? Well it took me a long time to accept that I will be a ‘Wheelchair Boy’ forever. Surely that’s understandable though. It is a bit of a change going from being able to walk around and playing football to having to use a wheelchair permanently. So, you’d think that people who deal with disability on a daily basis like the social services would understand that concept.

Apparently not. There have been a few examples recently where people have failed to grasp that this condition will be with me forever. Take my care package. I require 24/7 support, which I got at University, and have been getting at home. All of a sudden, those in charge of the money have said that I’m only entitled to 9 hours of care. They clearly think a miracle cure for Friedreich’s Ataxia has been discovered meaning that I am now able to wash, dress, cook and clean without any assistance. Although it has now been cleared up, this ridiculous error means that my carers (I prefer to call them PA’s) will have to wait until next month to get paid.

My standing hoist again illustrates that people have difficulties comprehending the idea of someone having a permanent disability. The Occupational Therapist has to come and check I still need it every 3 months. As if in-between the visits, I started to become ‘normal’ and no longer used the standing hoist. Even in some parallel universe where I got better and began walking, why would I keep hold of equipment that in this imaginary world would now be obsolete? Just don’t make sense.

So, why do various strings of the establishment keep checking if I’m still disabled? Although I criticise them a lot in posts, people who work in them kind of jobs are not plain stupid. They are merely working on behalf of the government and clearly understand that disability doesn’t go away overnight. Instead, they are checking if I’m still alive (or should I say hoping that I’m dead). Like I discussed in my previous post, the government want to save money and disabled people must be such an unneeded drain on the economy.  Killing the handicapped wouldn’t work and would result in mass uproar (Hitler tried) so the next best thing is to wait with baited breath for natural causes.

Now, before you all think, “he’s a bit touchy and insecure. Think’s that the government are trying to kill him”. I’m not saying that. I’m saying that deep down they want disabled people exterminated because it would make their life easier. Now, I’ve discussed my logical theory with my friend and he replied that he “wishes it wasn’t true but it probably is. Makes perfect sense” I know it’s a bold statement but I reckon the thought has crossed George Osbourne’s mind. Think about it. Not paying out benefits + not having to make adaptions such as ramps + not having to fork out for equipment + fewer NHS costs = would go a long way in helping to wipe out the deficit.

Also, you wouldn’t have to listen to whiney ‘Wheelchair Boy’.

Bye for now! 

WOW…

Unless you’ve been trapped in a room for years (apologies if you’re reading this from Ohio), you’ll be aware that the world has been suffering from an economic meltdown. Although Britain has not gone totally bankrupt like other EU countries (don’t get me started on that particular subject), solving the problem of the huge deficit has become the main aim of the government. The best way to sort out debt is constantly debated in politics but there is no clear answer. One thing is for the certain, the ruling party (the Conservatives with a tiny bit of Liberal Democrat help) have decided to go down the spend less and tighten purse strings route.

Fair enough. It’s a good idea… in principle! Just don’t be attacking the worst off in society. I fully understand that we cannot spend above and beyond our means but don’t go wasting money. Cuts to benefits/NHS/social care etc. wouldn’t be needed if funds weren’t allocated frivolously. Bringing it to a local level and sorry for repeating a point but no one seems to listen about the ridiculous speed humps. Why waste millions on ripping up a pedestrian path to put in ‘speed restrictors’ when our hospital is in dire need of money?

The other point is that most of the cuts are hitting the people in our country who simply cannot fight back, the sick and disabled. If I speak out, those in charge dismiss me, whether that is for the simple reason that my voice isn’t 100% clear or because I am a wheelchair user. Yes, I am writing this blog trying to challenge the harsh cuts but how many people will actually read this and take heed? Not many at all. The only way real change will happen is if people start to get together. Not a single post typed in his room by a lone ‘Wheelchair Boy’.

Fortunately, the United Kingdom is a democracy so disabled people can be heard one day but only if other people help by signing a petition. More information can be found at http://wowpetition.com but basically, the movement focuses on how the coalition have begun and are continuing to implement a ‘War On Welfare’ (WOW). There have been 39, 601 signatures so far but obviously, further support and exposure would be appreciated. Here’s the direct link to sign: http://epetitions.direct.gov.uk/petitions/43154

I would say that in the governments defence, they haven’t just been cutting. One example of them adding is the Bedroom Tax.  They’ve been kind enough to heap on the misery to a disabled person who will be financially penalised if they require an extra room for a carer. Great job.

If you are a politician who doesn’t understand because they don’t live in the real world, I was being sarcastic at the end. None of the endless damage you are inflicting upon our great country is a great job.

Bye for now!

Keeping clean…

This may come as a surprise because I’m a young male but a large part of my personality is that I’m a bit of a clean freak. It’s not that I’m afraid of germs so have to carry round a duster and sanitiser like a mental person but instead I cannot live if my body is dirty in anyway. For example, I can’t just roll out of bed, go to the gym and then have a shower. I need to have one before and after, even if there is only a couple of hours between them. I admit it’s odd. I even have to pop in the shower on Christmas morning even though my family stay at home and we have no visitors.

Pride has a lot to do with it. I can’t really be myself until I’m clean. Suppose you could say I’m not awake until that hot water touches my skin. Plus, I am physically repulsed by bad smells because I have a sensitive nose (seems like the only part of my body Ataxia hasn’t got the better of). How can a woman be attracted if I don’t like my own aroma?

I was going to blog about this subject last week but I forgot amid the excitement (and fury) surrounding the Craig David concert. However, I went to see Muse at the Emirates Stadium (only I would book to see a band I don’t like just because Dizzee Rascal was supporting) and when I got a smell of B.O. from the mass of alternative people, it brought back my anger. Fine. You like to dress ‘different to the norm’ and love head banging or playing air guitar but answer me this, is washing too mainstream? At least carry around a small bottle of Lynx in case you begin sweating.

Please. It stinks in nightclubs… and not in a good way. It’s OK for everyone else but I’m at armpit level and smell it all. So remember ‘Wheelchair Boy’ and have a wash or carry deodorant with you. It’s more important than having your mobile phone. Not just for me but have some dignity and self-respect. Nothing worse than having people talk about you.

Keep calm and stay clean.

Bye for now!

You don’t know what it’s like…

I blog in the hope that it will make people less ignorant but the harsh reality is the world won’t change because no-one, apart from those who are also disabled, will ever truly understand the life of ‘Wheelchair Boy’. The fact that you read my posts is a start because it means you are willing to learn. However, until people begin to ‘walk in my shoes’ so to speak, me moaning about the location of the wheelchair platform at a Craig David concert seems quite trivial.  Only a disabled person will know why that is such a big issue and really got to me.

Now, I’m not wishing disability on anyone (even my enemies) because it is an awful thing and shouldn’t be taken lightly. My suggestion is a social experiment so people can find out what it is like to be disabled without being struck down for life. I feel that concept would make a great television programme because it would educate and give a valuable insight as well as being great entertainment. It would force people to think differently plus the conflict and added humour of having an able-bodied person confined to a wheelchair would make great viewing.

Obviously, the problems disabled people like myself face on a daily basis do not just come from being in a wheelchair. Anyone ‘normal’ could happily sit in a wheelchair for most of the day. If anything, the majority of people would like that idea because no walking is required. I’ve had countless people tell me that I’m “lucky” and “it would be so cool to have a wheelchair”. That’s sort of true. If you can walk, it would nice to have a rest from time to time but life is not like that.

That’s why certain stipulations would need to be made in order to give the full picture. For example, you could say people can’t just get up Little Britain style to use the toilet. They’d have to use a bottle (a man obviously) or a hoist to transfer. Another idea might be to tie weights to the legs and other limbs so that it’s difficult to reach out and perform tasks. Maybe have a miniature keyboard which is difficult to use. To re-create the tired feeling I get, people could do a full body workout before starting the day. They are a small selection of my ideas. Only then will those without a disability fully understand the difficulties I face.

Attitudes can only change for the better when people literally change point of view and realise disabled people are downtrodden in society. I don’t make outspoken posts on this blog for the sake of it. These words are all based on the truth and come from experiences in my life (good or bad) in my life. The constant looks of pity and being treated in a patronising way will become all too familiar after a few days of my experiment, proving that I’m not just whinging.

Bye for now!

Second class citizen…

Just as I am racking my brains about what to write for my next post, the perfect subject for a blog lands on my lap last night. OK, it’s another moan but that is how life gets me sometimes. I get to the point where I’ve had enough with all the funny looks and patronising smiles. The woman in New Look asked if I was shopping. I mean, what else would I be doing buying clothes? Then, I mentioned the Craig David concert I was attending to which she replied “Awwwww, that will be good’. Wait people. What part of me going to a music concert is cute or adorable? It gets to the point where I want to scream ‘I’M AN ADULT’ but that would only confirm peoples belief that I am a mere child.

If I didn’t feel like total rubbish already, the concert would only help to cement that idea. Nothing to do with Craig David because, just like the show at Wembley over 10 years ago, he was amazing and put on an incredible live performance. The problem was that although there was a viewing platform for wheelchair users, this was wholly inadequate. My first objection was the position of the platform. It was at the very back so someone with poor vision like myself wouldn’t be able to see the stage. Secondly, it was far too small and would only fit 3 wheelchairs at a push, yet I counted 6 people in chairs, including Craig’s uncle. Thirdly, the structure wasn’t designed well because a black bar was in the way, again showing that these things are  ot though through from a disabled perspective.

When we arrived to see where disabled people were expected to sit, I began to get angry and spoke to a security guard, demanding to meet with the manager. She fobbed me off with some spiel about Health and Safety. I understand that the Southampton Guildhall is an old building but that doesn’t mean that the treatment of disabled people should be archaic. It felt as if disabled people were being put in the back corner, out of sight and out of mind. They didn’t care one about them or if they would be able to enjoy the show.

I’m not asking for the platform to be bang in front of the stage, but just nearer and at the side with a bit more room than what was provided. It’s like that at the Brixton Academy, a similar sized venue. Even at a large arena where wheelchairs are quite a way back from the stage, they have a TV screen showing the stage. The platform was on wheels and smacked of a last minute idea which wasn’t thought through properly. They were hoping disabled people would just sit back and not complain about the clear discrimination. But, they didn’t know ‘Wheelchair Boy’ was coming, just like they didn’t know how many wheelchair users had brought tickets.

My suggestion to move the platform nearer to the stage at the side was dismissed as “it may block other people”. This is a ridiculous argument because if they can’t see, they have working legs (unlike me) so can move freely to somewhere better. Even when I got down to the front, I still didn’t have a great view because I’m sitting down so obviously struggle to see over people.

I don’t want to get the violins out but it is bad enough having a disability without the added fact that I am treated as a second-class citizen everywhere I go. And I mean everywhere!

Sorry to be depressing but at times like yesterday, I don’t feel like a real person which is actually quite good because I am a bit ashamed of my ‘fellow’ human beings.

Bye for now!