Monday 28 July 2014

Much needed break…

Feels like ages since my previous post and that’s because it has been. July 11th was the last time I was on here, which means I haven’t written for almost two and a half weeks. A fact that I am quite annoyed with myself at for allowing io happen. I kept putting off writing, whether it be on here, Rolling Without Limits or adding to my book under the false pretence that I was preparing for my holiday the following week. In reality, my lack of work in that period was because my head was all over the place.

I don’t know if I was just run down but I was starting to lose it a couple of weeks ago. Everything was getting on top of me and I begun hating the world. The lines between the good people I’m supposed to like and the nasty ones was becoming blurry. It seemed easier to dislike everyone, including family members. I was especially tired of putting on a brave face and being polite because it seemed that not many others bothered to reciprocate my behaviour. This didn’t sound like me. I’m usually ready to take on the world and I wanted to get that feeling back.

As you can imagine, our family holiday in Tuscany came at the right time. I desperately needed to re-charge my batteries so that I would have the energy to take on life again. It was only a week (went too quick) but it certainly provided that relaxing break I craved. I’ll post some stories from the holiday in the coming week because I’ve got my mojo back and feel in the right frame of mind to write. Good news for my book as I’ve only done the introduction and chapter 1. I’m sure my enthusiasm will run out soon when my fingers get tired and/or my laziness shines through…

Bye for now!


Friday 11 July 2014

Wireless…

Last weekend, I went to the Wireless Festival for the second year running. I went on all three days this time because I couldn’t choose between Kanye West, Drake and Bruno Mars. Sounds expensive but a disabled weekend pass was £210 and included a carer’s ticket so it basically worked out at £35 per day. I thought that was quite reasonable as a normal person would spend hundred’s of pounds for one single day (ticket + alcohol + drugs). In hindsight, I should’ve just gone on the Sunday but I didn’t know Drake would pull out through illness and Kanye would be plain awful.

If you recall, my 2 days at the Olympic Park last summer left me with mixed emotions. I had a brilliant time and the acts were incredible (hence why I returned this year) but getting picked up at the end of the night turned into an ordeal. Please remind yourself of what happened by reading these two posts: http://theadventuresofwheelchairboy.blogspot.co.uk/2013/07/mixed-emotions.html and http://theadventuresofwheelchairboy.blogspot.co.uk/2013/07/mixed-emotions-2.html. Another difficulty in 2013 was the travel as getting back to St. Albans from East London is a pain, even with a London black taxi driver as a dad.

This year was a lot more easier in theory as the festival was at Finsbury Park, which is only about 40 minutes from home. However on the first night, a steward instructed my parents to wait for us in a street opposite. Little did they know we wouldn’t be able to get out for an hour after the concert-ended eventhough I was in the car 15 minutes early (that’s how bad Kanye was). I mean I understand that they needed to close the road as everyone was coming out but surely they could let us nip out before the crowds descended. Apparently the organizers don’t do common sense so we weren’t allowed out until 11.30.

The next night saw Kanye West headlining again (covering for the ill Drake) so we left after the Rudimental set finished at 20.10. Leaving over two hours before the festival ended meant that we were out with no problem and home in time for the football. Sunday was not an issue either as we agreed to meet my parents in a backstreet so could escape the area quite quickly. Bruno was amazing and ended with a spectacular firework display but we still managed to get back to St. Albans by 23.00 so happy days. Just a shame about the cock-up on Friday.

You’ll also be glad to know my brother and I had T-Shirts made again. They were orange this time so I thought ‘Wheelchair Boy’ and ‘Little Brother’ would stand out but obviously not. Most people were too high or drunk to notice/care.

Bye for now!

Thursday 10 July 2014

SADAG…

I have mentioned on here before that I am a proud member of the St. Albans District Access Group and have been ever since my little accident last year, which saw me lying horizontal on my back with my legs in the air. I once described the group as The Justice League as we aim to get certain aspects of the local area changed to improve the lives of disabled people in the City. Our most significant achievement came after months of arguing and continuous meetings when the council finally admitted they would have to remove the speed humps. Hopefully one of many victories as we fight for the rights of disabled people.

It’s pretty clear that I feel passionately about disability rights but the group needs some new blood as we do not have many members. That’s why the Chairman decided a few months back that we should have a website so that more people will be interested and want to join. He asked me to be Editor (he has read the blog so knows I’m an enthusiastic writer), which I of course said yes to. However, we have both been busy recently and the SADAG secretary/treasurer sadly passed away a couple of weeks ago so we’ve not been able to get the idea off the ground yet.

In the meantime, I have set up a SADAG group on Facebook (https://www.facebook.com/groups/1436410209977387/) to kick-start our online presence before we get serious with the website idea. Also, I’m not totally sure what to put on the site content wise so hopefully the conversations/debate will help me understand what to include. I have also recently joined Streetlife (a bit like Facebook but more aimed at community interaction) to engage with potential members and see if anyone wants to contribute to the website when it’s up and running.

Please join the group if you’re from the St. Albans area or are interested in disability issues (you must be one of the two otherwise why are you reading this blog?). Please spread the word too as the more members SADAG has, the stronger we can be. I don’t want to be fighting the council on my own. ‘Wheelchair Boy’ needs an army. Can you be  of help?


Bye for now!

Monday 7 July 2014

Bus travel advice for wheelchair users...

While I recover from an exhausting but brilliant weekend at the Wireless Festival (I'll post about it soon), my friend has written an article about the issues that disabled people face when using buses.

If you’re a wheelchair user then you’ll know how tricky bus travel can be. However with the development and introduction of more wheelchair accessible buses, this is all changing. Buses carrying more than 22 passengers are subject to the Public Service Accessibility Regulation 2000, which means new buses on local or scheduled services have to meet certain criteria to boost accessibility for wheelchair users. But as well as the bus companies there is a lot for you to consider carefully before heading out on the bus in your chair for the first time.

Accessible Buses

Make sure before you head out that the bus you plan to take is accessible to wheelchair users. It’s possible that the bus route will use an older style of bus without ramps. If this is the case then it’s wise to travel with assistance so you have someone on hand to help you on and off the bus as well as to fold and stow your chair. In towns and cities, buses usually have powered ramps but on rural routes it’s more likely ramps have to be unfolded by hand by the driver.

Most bus companies use the measurements of a standard wheelchair as a benchmark, so they will accommodate chairs that are 1200mm long, 700mm wide and no more than 1350mm in height to the top of the user’s head. If your wheelchair is not of standard dimensions then check with your bus company first to see whether yours will be possible to transport. If not then you may want to look into alternatives, like disability cars available from Allied Mobility.

When on Board

When you’re on board you should secure yourself and your chair to avoid accidents. Secure the handbrake to prevent movement of the wheelchair while the bus is in motion. There will also be a palm press bus bell and hand rails in easy reach for wheelchair users. Wheelchair users have priority over buggy users according to disability discrimination law, and drivers can ask people to move from the wheelchair area for you. Bear in mind also that disabled bus passengers over 60 years of age are entitled to free bus travel anywhere in England, which they can claim with proof of eligibility and permanent residence.

So wherever you want to go, your options should not be limited by your impaired mobility.

I hope that gives you some food for thought.

Bye for now!



Thursday 3 July 2014

#AttackItBack…

Roughly 10, 000 people suffer from Ataxia in the United Kingdom (that number will decrease if the Scottish become independent in September) which doesn’t sound a lot when you think that the population of Great Britain is in excess of 63 Million. The mathematicians amongst you will have worked out that approximately only 0.012% of Britons have Ataxia, which means that I am one of the lucky few!

It is no surprise therefore that a recent YouGov survey found that only 9% of British people had heard of Ataxia and most could not say exactly what it was. Ataxia UK (the main charity to do with fundraising & awareness) were appalled by the findings so teamed up with photographer Rankin, designer Paul Belford and TBWA London to come up with a hard-hitting poster campaign to increase public knowledge.

The campaign includes five different people with Ataxia (either Friedreich’s or Cerebellar) and gives a visual representation of how the condition affects the signals that the brain receives.  Also, there is writing beneath the image that briefly explains the condition so people instantly find out what Ataxia is. It is part of human nature to be inquisitive so hopefully anyone who sees the posters will be desperate to find out more.

Earlier, I joked that I am one of the lucky few with Ataxia. Well I was just doing some reading for this post and was shocked to discover two of the people in the campaign are siblings. I was even more horrified when I found out that there are six of them in total and three of them have FA. Talk about bad luck.

I always appreciate when people share my post with friends but I’d like everyone who reads this to get behind the campaign, whether that be through social networking (#AttackItBack), putting up posters in your local area (http://www.ataxia.org.uk/news.php/310/help-attack-ataxia-back)
 or using good old-fashioned word of mouth. When asked what is wrong with me, I’m fed up of explaining what exactly Friedreich’s Ataxia is. It would make my life much easier if people automatically understood the word Ataxia.

Raising awareness and making the world a less ignorant place is just as important as searching for that illusive cure in my opinion so please #AttackItBack (http://www.ataxia.org.uk/news.php/306/The%20invisible%2010,000%20who%20demand%20to%20be%20seen)

Bye for now!