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!

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! 

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!

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!

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:

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!

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!