psychological problems due to KC????

[Louise Pembroke]

It's just not taken seriously without a stick or dog which is why a recognised badge would help and be less cumbersome

[Anne B]

I agree with Louise, It would be great to have something to show that you have sight problems.

I would not want to carry a stick and look after three kids when out it would be impossible.
It would be great to have something like a badge to use in new situations.
after the last KC meeting i had to ask someone to read the board for me at liverpool street and that is where my KC gets me down.
As with everything a little recoginition would be good.

Anne

[Louise Pembroke]

Ok, is it worth us talking to the RNIB to actually DO something about this then? I'm on for taking action, anyone else?

[Mike Oliver]

No strong feelings about badges - but I wonder whether being "labelled" might lead to others placing us in an even less acceptable category than the eccentric who sometimes sees them and sometimes doesn't or moans because they need binoculars to read the destination boards at London Liverpool Street.

[Anne B]

I think it would be great to be involved in something that could make the life of someone with KC easier.

Haven't got a clue where to start!
I'm not the sharpest Knife in the draw

Anne

[Anne B]

I don't want to be seen as ecentric or even blind (if I carried a white stick) because i am not.
I have KC and i struggle in some situations a badge would help me point out that i have problems with my vision, but i am still me. It would also go a long way to restore any confidence i have lost in the last 8 years.

Anne

[Louise Pembroke]

It's not labelling Mike, anymore than a stick or dog, besides it would be a choice to wear it or not. It would be about something visible but not awkward [as has already been said about sticks] which was a visible indicator to others to help make life easier.
If you see hearing aids on a person, you don't start whispering, a badge indicating reduced vision would let others know to be more helpful/tolerate

[Alison Fisher]

Oooh, this thread is stirring up many long buried emotions. Your posts often do that Eman, but please don't stop as I find it such a wonderful thing to finally be able to talk about the impact of KC on my life with people who truly do understand what it's like.

My period of worst sight coincided with the years I took off work when my daughters were small. In one fell swoop I lost my social circle of workmates (I had worked some distance away from home) and was dependent on other local young mums for daytime social interaction. I explained I didn't see too well but none of them really understood. They could see me getting on with things (like there was any choice not to! ) so if I walked past them without speaking up at the shops I was branded as ignorant or stuck up. I have never felt as lonely in my entire life as I did back then.

I think the problem comes with the vast majority of people out there who've never had a sight issue thinking that you either see okay or you're blind, and if you're blind all you 'see' is pitch blackness. When they see KCer's doing some things without problem and other things being difficult for us it confuses them and in their minds they downplay our sight problems and think we're just being awkward.

I had some awful experiences when I was out and about back then and I used to rant and rave to my husband about how frustrating it was that my sight problem wasn't immediately apparent to those around me. It never occurred to me to carry a white stick and I well and truly fell through the cracks when it came to getting any real support. Even my health-visitor said (after my first graft) that it hadn't really sunk in with her how bad my sight had been.

Sorry for carrying on so but as you have no doubt gathered this has really touched a nerve with me. I have excellent sight now but the fear of making a fool of myself is something I still struggle with.

A stick or a badge would be great but I can't help thinking that the main thing would be for people to understand more about what partial sight actually is and how it can differ from person to person. But the thing is they're never going to really know until they experience it themselves, and for their sakes I hope they never do.

[Louise Pembroke]

Could the KC group put this discourse to the RNIB to see what they have to say, whether they might be prepared to produce 2 badges?
Imagine if there were some publicity events around the launch, it would facilitate education

[piper]

Allison, THANK YOU for your post, above. Anyone who has had their KC for more than a year or two knows that it claims hobbies, family activities, shopping and almost anything that is fun.

Here in the States we either have a full white cane or nothing....no badges. So, we KC'ers can drive to the airport, walk through the crowd and then have to ask for help as we can't read the terminal time boards. People sometimes mis-took me.....probably still do....as an illiterate.

As for depression, taking medications will often keep a person from buying life insurance here. So, many persons of all sorts take St. John's Wort. It can sort of balance out the highs and lows with no side effects and no medical history.

We're all in this together.
Cheers, Piper