UK Keratoconus Self-Help and Support Association

HI,

Just back from an evening at the pub where I had my first akward moment.

I had been in there a while when a friend spilled his pint, as he was cleaning it up I went to buy him another. Got to the bar only to be asked to remove my cap as it is the pub policy. I then found myself having to try to explain my eye condition and my light sensitive eyes.

The reply I received was that it is quite dim in the pub so I should be alright. Thankfully the owner who served me earlier stepped in and said I was fine.

I just wondered if there is a card available that would better explain the condition that I could carry in my wallet. If so I would like to return to the pub and show them and have it on hand for other places if necessary.

It can be difficult enough trying to lead a 'normal' life without having to try to explain to strangers a condition people rarely understand.

Chris,

Other than handing out the group's factsheets, I can't really think of anything, sorry.

At least there was someone there who used some common sense.

How widespread is this problem? Has anyone else had problems because they wear a hat?

I don't go into the Co-Op in a nearby village as they have a no hat policy, and I was once told (very abruptly by two burly security men) in a ten pin bowling alley to either remove my hat or leave. I'm a forty three year old woman for heaven's sake - what do they think I'm going to get up to in my hat???

John Smith wrote:Chris,

Other than handing out the group's factsheets, I can't really think of anything, sorry.

At least there was someone there who used some common sense.

Thanks, I may return and give them a factsheet. At the very least it'll show I was being genuine.

Alison Fisher wrote:How widespread is this problem? Has anyone else had problems because they wear a hat?

I don't go into the Co-Op in a nearby village as they have a no hat policy, and I was once told (very abruptly by two burly security men) in a ten pin bowling alley to either remove my hat or leave. I'm a forty three year old woman for heaven's sake - what do they think I'm going to get up to in my hat???

Perhaps they thought you were going to steal a bowling ball by hiding it under your hat.

Seriously though that really is shocking. Maybe we need an awareness campaign and a special card issued by a doctor.
These no hat policies are springing up everywhere. I'd also love to know how many other KCers have faced this problem.

ChrisK......I can identify with you on the pub experience. As a Piper, I have spent lots of time playing requests in badly lit places.....


Next time, just quietly them that you are a bit vision-impaired......you'll gladly take off your cover if the barmaid will hold your hand and walk you back to your table. Either way, you win.

Have a nice room temp Murphy's for me.

Cheers, Piper

Chris,

I have a Medic Alert bracelet and I have the card that goes with it in my wallet. It only says corneal transplants, but you can specify Kerataconus. When I have been questioned I flash the card and bracelet and ask if they know about the laser eye surgery advertised on the TV. Most people have so I just say that leaves you sensitive to light after initial surgery; so although a pub is dimply lit the fruit machines and such light give brigt flashes that are painful.

This has surficed in all situations so far.

Visit the Medic Alert Web Site for more info, they are internationaly recognised and I think they have branches all over the world which might be of interest to our international visitors.

I don't wear a cap: I wear a broad brimmed fedora. People look at me ascanse but then decide not to trespass on my fashion statement.

Little overweight grey haired men in broad brimmed hats are given a wide berth by bar staff in Scottish pubs.

Andrew

ChrisK wrote:Perhaps they thought you were going to steal a bowling ball by hiding it under your hat.

The whole stigmatism issue to one side I wouldn't mind quite as much if I wore baseball caps but they don't suit me. My usual hat is an unassuming cream cloth one.

I wear many different types of headgear ranging from the visor type to my drovers hat. I have to say I haven't encountered any problems when I go anywhere. I'm just known as 'The lady with the hat' and people tend to not recognise me if I'm not wearing it for any reason

Lesley.

I think that this may be a "young man with baseball hat attracts negative discrimination" story.

Old men with big hats are just eccentric. Women with hats are equally innocuous. Young men with baseball hats get the moral panic rising in the population. It is "obvious" that they are only wearing their caps to foil CCTV.

Yet for many young men with KC the thought of venturing out without the sun shade afforded by their cap would be overwhelming.

Some folk with KC attract hostility by wearing sun glasses. Much the same sort of thing is in play with this discrimination. People think they are just affecting a spurious sort of anonymity and react wither with derision or hostility. I know that I am protected from much of this by my age and my occupation, but for those who are its victims it must be intolerable.

Andrew