New car seat…

The most frustrating part of having a degenerative condition is that your body is constantly deteriorating. I am totally aware of these changes but there is nothing I can do to prevent my Friedreich’s Ataxia from getting worse. Back in June 2013, I got a Kia Venga and was really happy with my new car. I still love Arsène (as my dad calls it) but there is a problem with the way I transfer. This problem is nothing new but I have buried my head in the sand for too long and have only recently accepted that I need to address this issue before either me or my carers get seriously hurt.

I don't normally have my parents on hand to assist so the transfer is even more difficult than it looks...

I currently have a turnout system so the passenger seat swivels out to the side and I move across into my wheelchair. That used to be fine because I could (with the support of the car door) stand, pivot and then smoothly sit down. Now my legs are weaker, I end up basically flinging my body across and hoping that I don’t hit the floor. Increasingly, I am ending up on the deck and have to rely on passers by to lift my hefty frame up. This happened twice today; once in town and once on my driveway. Luckily, there were people around to help on both occasions, otherwise my carer and I would have been stuck for ideas.

The system I have at the moment....

However, there is a simple solution but I cannot afford it. The system is called the Carony Classic and, although the basic price is roughly £3080, the add-ons mean that it will end up costing £3734. Unfortunately, I do not have that sort of money so have decided to set up a donations page in the hope that people will be able to assist me. The site (www.crowdfunder.co.uk/carony-classic-wheelchair-system) is easy to use and will make sure the money is given directly to the cause. I understand that times are hard but the floor is often harder. But on a serious note, I would very much appreciate if you donated whatever you can.

The Carony Classic will completely eliminate dangerous transfers like this!

I will give frequent updates on how the fundraising is going so make sure you check back to the page regularly (although I will share any news on here of course). You’ll also notice on the site that there are rewards if you give a certain amount so be sure to check them out!

Bye for now!

I'm writing this post from the car because I couldn't get out...

No room at the inn...

Recently, as you may have seen if you’re privileged enough to be my Facebook friend, I have been going to watch various TV recordings thanks to Applause Store; some being more problematic than others. Britain’s Got Talent was brilliant as my brother and I got to sit in a box (I don’t know if it was royal but Ant & Dec bowed in our direction when they came on at the beginning) to watch the auditions which this year were held at the Dominion Theatre on Tottenham Court Road. On Friday afternoon, I made the short trip to Elstree Studios to watch Virtually Famous being filmed and that too went without a hitch.

A perfect view of the judging panel and stage...

In contrast, Top Gear (which is surprisingly really difficult to get tickets for) was just awful live in my opinion. I’m not a massive car fan nor do I think all the ‘banter’ on the show is made in good taste but there are parts that make me laugh and that’s why I made the 2 hour journey down to Guildford a couple of weeks back. However, the final cut that makes it to the TV the following Sunday is much more entertaining than sitting in a cold air hanger with a restricted view of the presenters and watching clips of cars while you wait for Jeremy Clarkson to take yet another cigarette break. I recommend it to no one!

What a view: Worth the trek down to Surrey...

Worse than that though was Reality Bites (a new panel show hosted by my favourite TV personality Stephen Mulhern), which I can’t even comment on as we didn’t even get in. It is filmed at the London Studios on the South Bank so we got the train from St. Albans to Blackfriars just before because, as I’ve explained before, getting a wheelchair on and off a packed train can be difficult. Also, the train is slightly cheaper off peak. After eating, we arrived at 17.45 (one hour before doors as is the standard procedure for disabled audience members) and spoke to two girls in Applause Store jackets. One of them told us to wait in the main reception until they were ready.We did but as it was getting closer to 18.45, we thought she'd forgotten us.

My brother spoke to a runner who kindly agreed to escort us through the building to the studio. Two women greeted’ us at the doors with confusion and were actually quite hostile/rude when they realised we weren't production guests. Then, the girl from Applause Store came along and told us that there were already two wheelchairs inside so there was no more room. It had been a wasted journey (although the food at Azzuro was lovely and made the trip worthwhile).

My sister and carer began to argue (obviously I was annoyed but I prefer to express my anger in the written form) because, like they pointed out, we were not told that there were only two wheelchair spaces at the recording and we would possibly not get in. If we had known from the start, it would have been easier to take and we could've perhaps gone to the theatre. Instead of that, we wasted our evening waiting around like fools. Eventually, the girl admitted that she had made mistake and offered to upgrade my membership to priority as a means of an apology. Not the greatest sorry ever but after writing a letter and getting nowhere, I realise it’s better than nothing.

I saw the aforementioned girl on Friday. She patronisingly asked if the emergence of the sun “had put me in a better mood?” as if the whole Reality Bites situation was my fault. I laughed and bit my lip…

Bye for now!

Positive discrimination…

It’s a subject that comes up a lot when people talk about minority groups and employment. It normally boils down to whether someone should get a job because of a particular skillset or because there is a quota in place. I believe forcing companies to recruit minorities is fine in the main because minorities (whether that be Blacks, Asians, LGBT or the disabled) have the same amount of talent but it’s much harder for them to progress in life compared to straight white able-bodied men. Minorities simply need a push up in the form of positive discrimination.

However, I want to speak about positive discrimination generally rather than focus on employment. What prompted me to write this post was when my friend asked me if I am treated more favourably in some situations because I am disabled? The answer is of course I am. I’d be lying if I said otherwise. For example, there is no way I would have been chosen to come out of the tunnel behind the players at the Emirates Stadium in 2013 if I was an able bodied supporter. Also, when I meet/have my photo taken with celebrities, I believe that most wouldn’t have given me the time of day if I wasn’t in a wheelchair.

So being disabled does have it’s perks but obviously I’d rather queue for hours and never meet celebrities than have Friedreich’s Ataxia. Whenever I am treated favourably because of the disability, I just think that I pulled the short straw in life so it’s about time my luck improved. The negative discrimination that I face on a daily basis definitely outweighs any positive discrimination. I wish being disabled was a game I could switch on and off so I only experienced positive discrimination but unfortunately it’s not. It’s probably an 80:20 split in favour of being negatively discriminated against (as you read about in this blog).

The point I’m making is next time you see a person in a wheelchair jumping a queue; remember at least you can walk.

Bye for now!

The blame game…

A couple of weeks ago, I warned that Westminster Lodge (my local leisure centre where I go to the gym) would be the next establishment to feel the wrath of ‘Wheelchair Boy’. I had numerous complaints (which I had to write down so I did not forget) and Steve Cox, Everyone Active contract manager, took the time to hear me out and discuss the issues in full. I found it quite refreshing how he seemed to listen and take on board my comments but the proof will be in the pudding. It’s one thing e-mailing me a few days after the meeting to update me on how he proposes to resolve my problems but whether anything changes remains to be seen.

One of the problems I raised was that the disabled toilet outside the gym had been closed on and off since April 2014. I had already spoken to a few managers who gave me patronising and unsatisfactory answers. The General Manager, Lesley Garner, even implied that disabled people don’t matter and agreed that if an ordinary toilet was out of order, it would be fixed within a week. As you can imagine, I was incensed by this blatant show of disregard towards disabled customers and decided to go directly to the person in charge to see if his answer was different.

However, just like every company or establishment I have a complaint against, Steve Cox firmly shifted the blame away from Everyone Active. Firstly, the issue was that the builders were finding it difficult to get the correct tiles (ridiculous excuse) to fix the problem so it was the building contractors fault. Secondly, the Council were to blame as they hold the purse strings and should be the ones to hurry Willmott Dixon up. I have got the contact details of Stuart Foster at the Council so that I can try and apply pressure from my end. It’s just a shame that businesses tend to point the finger at each other like naughty children in a playground and it’s left for me to discover who the true culprit is.

My second complaint involved the turnstiles. Obviously, there is an electric gate that opens to let wheelchairs or parents with buggies through but I have waited five minutes before for a member of staff to notice me and press the button. That doesn’t sound very long but when you think that able-bodied people can just swipe to gain entry and don’t have to wait at all, the discrimination becomes clear. Yet again, the blame game was played, as it emerged that the manufacturers are at fault. Apparently, there is nothing they can do to improve the situation.  Why a different manufacturer cannot be used is beyond me?

These two examples of passing the buck plus the Herts Ad one (where they blame the Council for a listed building eventhough no one forced them to move into inaccessible offices) from last week just go to show that there is no accountability. Unfortunately, we live in an era where people do not take responsibility and will happily blame someone else.

Bye for now!

Shaking with rage…

Last week, I read an article in the Herts Advertiser about the newspaper’s temporary re-location to another office in St. Albans whilst building works on their normal residence takes place. To set the scene for those who are not familiar with the Town Hall Chambers (permanent home of the paper), the offices are completely inaccessible to disabled people, mainly because of the large steps up to the front door. I had not really considered it much before until the chair of the St. Albans District Access Group, Robert Hill, pointed it out to me.

I decided to write a letter to the Herts Advertiser seems as the subject of their offices were in the news but they were too cowardly to print it so I thought I’d share it on here:

Move with the times

Sir

I would just like to wish everyone at the Herts Advertiser good luck with your temporary office re-location and say that I cannot wait to visit your old offices once you return in four months. Oh wait, I still will not be able to get in (what with Friedreich’s Ataxia meaning that I am permanently confined to a wheelchair).

In last weeks edition of this paper (January 22), you are quoted as saying the Herts Advertiser is ‘the only newspaper with an office in St Albans City Centre’. This is clearly a dig at the other rival papers in the area but all I would say in response is at least their offices are accessible to all. You may feel ‘privileged to be at the very heart of the community’ but the fact is your first-floor office in Market Place is cut off from a part of the community who obviously do not matter; the disabled.

The majority of your loyal readers will not be aware that the normal home of the Herts Advertiser is inaccessible to anyone in a wheelchair or with a severe walking impairment, so you couldn't employ/offer work experience to anyone with a physical disability like me. Surely this is in breach of the Equalities Act?

Can you offer reassurance that this will be rectified when you return to Town Hall Chambers later this year? If not, rather than reiterating that the building is Grade II Listed, can you explain why the Herts Advertiser will not move permanently into 2015 instead of being stuck in the dark ages?

Yours,

Glen Shorey,
St Albans District Access Group,
Corinium Gate

You can imagine how disappointed I was when I picked up the paper this morning, turned to the Your Views section and discovered that my letter was nowhere to be seen. Talk about censorship. Just because a letter is critical of the Herts Ad does not mean it should be suppressed. Britain is meant to be a fair democracy with freedom of speech being an integral part of society so even if one does not like what is being said, one does not stop said person from airing their opinion. I believe there should be a mixture of voices in the media but perhaps that is why I did not become a journalist in the end.

My frustration that the letter had not been printed soon turned to uncontrollable anger when I read this response earlier:

Dear Glen,
I am sorry to receive your letter, especially given the help and support the Herts Advertiser has offered you over the past few years.Whereas our office space is not easily accessible, that does not mean our staff aren't.
As you will be aware, we are more than happy to meet with readers outside of our office space to discuss stories, and are therefore not preventing any members of the community from accessing our services.
We do not own either Town Hall Chambers or 7 French Row - they are council buildings - so are not in a position to alter them in any way.

Matt Adams

Editor, Herts Advertiser

Now, there are many issues with that reply. Firstly, how dare Mr. Adams (not Matt because that is too formal; we are not drinking buddies) suggest that just because the Herts Advertiser have wrote a few stories about me and printed one article by me, I am not entitled to voice an opinion about the accessibility of their offices. Secondly, he has completely overlooked my point that the newspaper cannot employ a disabled journalist, which is illegal. Finally, I guessed that the blame would be attributed to the council who own the listed building but my question was why couldn’t they move offices permanently? That remained unanswered as well.

Yes, I may have burnt a few of my bridges at the local paper but I do not care one bit. My main aim in life is to make disabled people more equal in society, not to maintain friendships. I speak up for myself and if people don’t like my opinion, so be it but no one is exempt from feeling the wrath of ‘Wheelchair Boy’. Don't worry, this will not be the end of it.

Bye for now!

Why Not People…

Music is a massive part of my life. I don’t enjoy it as much as football but it’s a close second. I try and get to concerts but as with all things in life, my disability makes it that little bit more difficult. Ordinary people can go and book tickets online in under 30 seconds whereas I have to call up a special access helpline. That normally takes ages though as these companies do not realise that disabled people enjoy going to gigs just as much as everyone else so usually only have one member of staff to deal with disabled customers.  I have lost count of the hours my carer or I have spent on hold trying to book a wheelchair space.

I should say that it’s not just music events that put up obstacles for disabled people. However they are the focus of this particular post because I would like to talk about Why Not People?, the first music and events members club aimed at people living with disabilities set up by Jameela Jamil (T.V. and Radio presenter). The idea came about because Jameela was in a wheelchair following a car accident in her youth and has lived first hand in a world that does not make room for those living with impairments. Therefore she understands that it is nigh on impossible for a disabled person to have a good, fun night out without any problems.

That’s where Why Not People? comes in. A number of events headlined by leading international music artists will be created in order to make the enjoyment of music more accessible for the 11.8 million people living with disabilities in the UK. The experiences of disabled music fans are varied. Some will have absolutely no problems but I always seem to face at least one issue, whether that be the booking process or attending actual events. Nothing is ever simple with ‘Wheelchair Boy’ and going to a concert is no different.

Although I don’t have many friends, another obstacle that has prevented me from enjoying music to the fullest over the years has been that it is difficult to get additional  tickets for more than one person. I would normally sit with my carer and then a friend/family member would be separate. Why Not People?  wants this to change by creating ‘exciting events that people living with disabilities can enjoy alongside their friends’.

In order to help enhance the experience of all people, not just music fans with physical disabilities, Why Not People? is committed to introducing new technologies – such as the SubPac. This new piece of wearable technology transfers low audio frequencies onto the body, reinventing the way we experience music.

Founder Jameela Jamil has used her fame to her advantage by calling in some of the finest talent, ambassadors and branding to help put on entertainment gigs that are fully accessible. It was confirmed earlier today when the official website was launched that various artists including Coldplay and Mark Ronson are on board.

To learn more about Why Not People? go to http://www.whynotpeople.com/, Facebook https://www.facebook.com/whynotppl and Twitter: www.twitter.com/whynotppl. The company is only in its infancy but I’m confident it will be a great success.

Bye for now

Guestbook- Entry 4…

Like many people, I have always known the importance of drinking water but I don’t consume enough of the stuff. It’s not that I am deliberately being unhealthy and want to cause irreversible damage to my kidneys; I just have never made drinking lots of fluid a regular habit that comes naturally to me. However, after reading

the following post on the subject by Andrew Atkinson (a director of mobility products specialists MobilitySmart), I have decided to make a conscious effort in my life to drink more often:

‘Are you dehydrated?

If you are, then your mind and body aren’t working to the best of their ability. Whether you’re exercising, spending your time volunteering or filling your days with your favourite hobbies, you’re missing out on feeling your best.

How to Tell if You’re Dehydrated

Can you tell if you’re dehydrated? Most people believe that they’d know, but it’s a fact that a majority of people aren’t able to recognise the signs of dehydration.

In some cases, people are just too distracted to notice that they’re feeling a little thirsty. If you’re concentrating on another task, forgetting to drink is surprisingly easy to do. However, a much bigger phenomenon is also at play.

The human body learns to block signals that it’s been experiencing for a while, even if those signals are the body’s own warning signs. You can test this theory by pressing a finger onto your arm, waiting a while and removing it. You felt your finger as you pressed it onto your skin, and you no doubt felt it for a little while afterwards, but eventually your body becomes numb to the sensation and you no longer notice the pressure. If you’ve been dehydrated for a little while then you learn to dull the symptoms. You might become completely accustomed to the level of thirst, the headaches and the dry mouth that you’re experiencing. As you read about them you may suddenly notice that you’re feeling thirsty, but this won’t always be the case.

Did you know that human beings are losing touch with their body’s signals? You should be able to tell the difference between hunger and thirst, but it’s often impossible to distinguish between the two. If you’re feeling a desire to eat, drinking instead might be more beneficial. Current obesity levels might in part be attributed to people not recognising that they’re thirsty rather than hungry.

How Much Should You Be Drinking?

As a rough guide, women should be consuming 2.7 litres of water per day. Men should be consuming more – a total of 3.5 litres. If you’re currently drinking nowhere near this amount then it’s highly likely that you’re dehydrated, even if you feel entirely comfortable.

Your body is used to what you’re drinking. It’s able to adapt, but not entirely. Whilst you might not feel constantly thirsty, your organs aren’t functioning as well as they should be. Long-term dehydration can lead to a wide range of problems including memory loss, concentration issues, organ damage and the slowing of your metabolism.

Start drinking more and after a week you should notice that you’re no longer able to survive on what you used to drink. Your body now recognises when you’re dehydrated, because it’s experienced the feeling of being properly hydrated. You’ll probably feel much MORE thirsty, but be aware that this is a good thing.

As you start to drink more water, you’ll find that you need to use the toilet much more. This, again, is because your body isn’t used to being hydrated. After a short while, your body will adapt to being hydrated and you’ll be able to stop visiting the restroom as much.

Why is Water So Important?

Your blood is 83% water. Your muscles and your brain are 75% water. Hydration is vital to your health, and if weight loss is a priority then you’ll also be pleased to know that it’s easier to lose weight when you’re well hydrated.

How Should You Drink Your Water?

Fresh water at body temperature is the best possible drink, but feel free to adapt what you’re drinking if you prefer your water to be heated or to be cooled in the fridge. Try not to add too many other ingredients – water is better than squash, juice, tea, coffee or soda – but squeezing a slice of lemon or lime into your water can help to improve the taste without removing any of the benefits.

If you’re struggling to remember how much to drink then you can buy a 750ml flask or sports bottle and use it for all of your drinks. Aim to have filled it, and to have consumed the contents, an absolute minimum of 3 times per day. If you’re using a glass then it can be easy to pour drinks of different volumes or to forget how many times you’ve filled up your glass, but it’s easier to keep track of what you’ve put in your flask and you can take it out and about.

It’s not easy to get into the habit of drinking as much water as you should, but by setting yourself some reminders and keeping track of how much you’re consuming you’ll soon find that you’re more hydrated, more alert and healthier. Drink enough water and your life can be enjoyed more’.

Please feel free to E-Mail me if you would like to appear in my Guestbook. Thank you to Andrew for writing a very interesting and informative piece. It has certainly made me thirsty.

Bye for now!