Proving epilepsy: The need for a universal card

First things first, I hope everyone is enjoying the summer break and all you parents out there haven’t lost the will to live yet. Currently I have considered sending the teenager to borstal at least 15 times and have also contemplated changing my name and chopping my ears off so I don’t have to hear “I’m hungry” one more time. How can you be hungry? You had a snack 6 minutes ago.

Anyway, in the spirit of the summer holidays and spending time together as a family, we went to Digger land on Monday. Anyone with teenagers or children will know the effort involved in planning any sort of day out and the sheer determination you must have just to get everyone out of the door, on time and with everything you need for the day.

Thankfully, by 9am Monday morning we were in the car, the picnic, containing enough food to feed the five thousand because nobody will eat the same lunch, is in the boot, sensible shoes are on everyone’s feet, the children and teenagers alike have enough devices and activities to keep them entertained for days even though we are only going an hour and a half up the road, seatbelts are all on and the husband has got a diet Pepsi to keep him going. We can finally set off.

Previously, I have talked about how I always buy the discounted disabled tickets at places that offer them and get the free carer ticket for the husband. I do this because if I have a seizure or something happens I know that he knows exactly what to do to look after me and ensure my safety as well as everyone else’s. At least I hope after all these years he knows what to do! I don’t do it simply to save money, although not going to lie, although I am from Yorkshire so saving money is always a bonus. In a lot of places, particularly theme parks, if you are a disabled customer, you are given a wrist band to wear, that informs those working in the park that you have a disability. This is something I really like. While I don’t feel the need to shout about my disability, I am not ashamed of it, and should the worst happen while I am on a day out I think it is important that those working there can identify the fact I have a disability.

The problem arises however, when you must prove your disability to receive the discount or wristband etc. Now I fully agree that you should have to prove you have a genuine disability, otherwise you would end up with any Tom, Dick or Harry stating they have a hidden disability to receive a discounted ticket. The issue I have is how  you prove a hidden disability?

Many physical disabilities are visible, and I highly doubt any establishment would argue about them. Hidden disabilities are just that however, hidden. Many places ask for evidence such as proof of PIP payments or disability allowance. While some with very complex epilepsy, along with other conditions, do receive such benefits, many people with epilepsy do not qualify for them. So, if you don’t qualify, how do you prove your disability is there? Short of dropping to the floor and peeing myself at the admissions desk there is no real physical way to prove I have epilepsy. Many places do state that doctors letters count as evidence if you can also provide photo identification. My issue with this is, one, how recent does the letter have to be and what exactly does it need to state? And two, if this letter contains sensitive medical information about me, do the members of staff that will be reading it sign a confidentiality policy? In all honesty, I don’t feel particularly comfortable having strangers read my medical history!

The whole stress of having to figure out a way to prove my epilepsy to the, more than likely, 16-year-old on the admissions counter has me in a cold sweat all the way to Digger land. By the time we reach the place and are stood in the admissions line I am clutching our tickets and a letter from my consultant like an alcoholic clutches their bottle of white lightening outside the Co-Op on a Saturday night, my anxiety is so high that I’m not even paying attention to the two small children who are climbing all over a decorative digger and have already started eating the picnic even though it is only 10.15am. Thankfully, there was no need for my anxiety, the rather lovely girl on the admissions counter didn’t even ask for any proof, she just let us through.

We ended up having a fantastic time at Digger Land. If you have never been I strongly suggest you go. Everyone loved it. The adults, teens and children. The girl child accidently ruined another child’s ice cream, the boy child almost ran over a member of staff with a digger and the teenager got a tractor stuck in a hole. I managed to beat the husband at a game of wrecking ball skittles so it was a good day all round!

It has, however, made me seriously consider if there isn’t a better way to “prove” epilepsy, and other hidden disabilities. I believe we need to have a universal card. One that is recognised and accepted throughout the country. Think how much easier that would be. Not only when you are wanting to get a discounted admission but also when you are travelling by yourself or if, heaven forbid. You became unwell. Others would be able to identify your disability. Having thought about this for a while, I have decided that as a charity, Purple Owl, (If you don’t follow us on facebook and twitter do it now!) is going to campaign for a universal hidden disability card.

Watch this space!!!