Am I “Disabled” Enough?

I wrote a blog post here previously about the history of my illnesses and how they affect me. The truth of the matter is that even since then, my health has deteriorated even more to the point where we are now even more reliant on the wheelchair – just because it makes my wife’s life easier without having to worry about my energy levels and because it means that I get to enjoy days out, something that had become a thing of the past.

To put this into context, I’m not wheelchair bound and I don’t use it at home but it’s become a necessity for any trips out that are likely to involve either a bit of walking about or standing. Even a trip to the supermarket can leave me utterly exhausted and struggling to walk and as the day progresses the symptoms get worse and I have real trouble in using my brain, trying to do things like order a half & half pizza has become renowned in our household because pretty much every time I end up ordering a pizza with both halves the same because I’m just not capable of remembering what I did 2 seconds ago when I become fatigued.

If we want to go out for the day, say to the seaside it becomes a proper effort, we absolutely need the wheelchair because before we’ve already left the house my wife is already planning how she is going to get me back to the car when I inevitably hit the wall.

However, in the eyes of most people there’s nothing wrong with me and what I find very hard to cope with is the fact that in the eyes of the government I’m also “fine and dandy”. I’m not entitled to any form of PIP, I have to pay for my prescriptions despite the fact that if I stop taking my medication I will become very ill very quickly with potentially life threatening results.

Because of the stress of having to get me around and about, my wife decided that she would apply for a Blue Badge. Now our intention was not to use it when it was not required (i.e trip to the supermarket or the local town centre), but only when it is necessary like a day out when we know that it’s going to end up with me being completely exhausted. I, like many people with my conditions was not hopeful, but I figured there was no harm in asking.

The morning came when we had to go to the assessment centre, we turned up and were brutally honest about how my condition affects me. I had to do the “walk around this part of the building” timed test, which of course, because I’d just woken up I didn’t have a problem doing.

When we went into the room for the next part of the assessment I handed over my medical documents and the lady was shocked, not just with the amount of medication that I take but the list of conditions that I suffer with (which all have fatigue as a HUGE component of their symptoms).

She looked at me and said,

“I’m really sorry, I can see just how ill you are, but because you could walk around the building in a reasonable time there’s nothing I can do, the government deems that you are well enough not to need a blue badge”.

The crux of this is the idiotic test, the walk around the building – that proves that at that particular time I could manage it fine, if I’d been out for the day in the chair or maybe just a trip to the supermarket I might not have been able to manage it in the cut-off time.

It also makes no provision for the nature of my medical conditions, I’m pretty sure the lady going the interview had no idea or in-depth knowledge of just how these conditions can affect somebody (and why would she, she’s not a doctor – I’ve met plenty of doctors and nurses in hospital who had no idea what some of my conditions actually are!) and how that individuals medical history affects them, I have had volumes and volumes of hospital notes so surely the people who should be deciding whether you need (and indeed under what circumstances) a blue badge might be warranted should be a doctor?

She offered to rebook the appointment for a later time, but I was so deflated that I declined – I haven’t got the fight in me to continue a pointless battle. The irony is that I could have gone in there, faked a slow walk and with the medical records I would have had a better chance, so it’s not hard to understand why people play the system when it can obviously be manipulated so easily. A 2-minute walk is not a suitable test or even pre-test to a blue badge application.

Fast forward to a couple of months ago. I use my Access Card at venues all over the place, ones that don’t even specifically accept it have taken it as evidence, the card has been a god send because it means I can enjoy gigs in my wheelchair without being in pain and there’s no worries about getting home after!

We go to the cinema a few times a year and I wanted to see Rogue One, so we checked online and found that the cinema would not allow us to book accessible tickets online without a CEA card. So we phoned up and the helpful man on the phone booked the tickets and we explained that I didn’t have a CEA card but that I had an Access Card and to be fair to Odeon the man said “that should be fine”. We went to the cinema half expecting to have an issue, but luckily I showed the card and the guy said “Yep, perfect” and handed us our tickets!

However, it’s far more convenient to book online, I can see the screen layout and what seats are available – but most of the cinemas are elusive in their information and particularly if you want to book online it is a requirement that you have a CEA card.

So I looked at the CEA card site, accepted forms of evidence were all things that I don’t have, PIP, Blue Badge, Benefits Letters etc. Humn, just how “disabled” do I need to be? So I sent an email to them questioning their requirements and asking what else I could submit, I had doctors letters outlining my medical history? About a week (!) later I had a response, “Please submit any documents you have”, great, this sounded positive so I did.

Another week or so passed and I hadn’t heard anything, so I fired off another email to get the response:

“Unfortunately eligibility is still required, as there was no evidence in the proof you supplied that you require assistance. You would be entitled to the CEA card providing you are currently in receipt of one of the following:-

*Personal Independence Payment (PIP)
*Disability Living Allowance (DLA)
*Attendance Allowance (AA)
*Blind Persons Registration (RB)
*Armed Forces Independence Payment (AFIP)

Please could we arrange for a copy of eligibility to be forwarded either via post or email.”

Humn. Back to square one, I don’t have any of those – but the medical evidence I submitted from my doctor didn’t count for anything. Even a quick google of any number of the conditions listed would have shown that my life is far from simple. I even prempted this by writing a document explaining my conditions and the effect they have on me and why I need this and submitted that – along with a nice scan on my access card!. I mean, what else do they need, DNA proof? A picture of my very badly broken genes on holiday in Majorca?

It was at this point I got the hump (yeah, don’t give me the hump because I turn into the hulk), and I fired off an email to the CEO of the CEA card and CC’d in literally everybody I could find, papers, cinema CEOs, Martin (Sorry Martin!), M.P’s and rather unsurprisingly a few hours later I received a response from the CEO of the CEA outlining that something had gone wrong and that any applications that don’t need meet the initial requirements should have been forwarded on and dealt with directly and personally by somebody at the CEA and that my application would be processed and that a card would be with me soon.

Now, while I may have won that round of the war I suspect I will face the same problem next year when re-applying. I don’t understand the logic of the cinema chains here, surely encouraging disabled customers into their cinemas by making it easy? A choice in how they can purchase tickets and what evidencing they can provide would be a good thing and get more bums on seats? We go to the cinema, we buy an outrageously priced drinks, sweets and popcorn and we enjoy the film. If music venues and festivals can offer and make it easy by allowing many forms of evidence for free companion tickets, why are cinemas apparently making it so difficult for us? A festival ticket is 20 times the cost of a cinema ticket!

So am I disabled enough?