UK Keratoconus Self-Help and Support Association

Decided to walk into town as I live a 20min walk from the centre of Leeds, ended up chatting to uni friends on the way as cut up past uni to see if a friend was around.

Usually do shopping online - saves anxiety and stress!

But went into a well known department store, found what I thought I wanted, paid, then went down a floor to discover what I actually wanted cheaper.

So went a till and explained I had literally got the other items 10minutes ago can I exchange them?

Till dude 'nopes go up 2 floors to customer services, havent you seen the signs we have behind me?' meanwhile a tanoy annoucment saying the air conditioning was breaking down as was the up escalator.

Q me 'erm sorry till dude I am disabled with visual issues as well as arthritus therefore can't go to customer services and under the DDA you have to make a reasonable adjustment for me' Dude - what is the DDA - me - went into a lil detail :p asked for his supervisor as he was useless, she came and said to go to customer services, I again said DDA so managed to get a refund and exchanged after she muttered ' oh **** she knows what we are ment to do better do it! I then asked forher supervisor was by this point not happy with 2 members of staffs inital attitudes. Her supervisor took me tot he cafe and got me a drink, appologised like mad and promised me if I am aback in the store to find a assistant when I enter and ask for guiding! So a semi result, but why should I of had to expalin the DDA? and then used it?!? - I hate labels due to the stigma and discrimination they cause, but yet find myself having to use them in order to get heard! - so much for Social Model of the word I hate 'disability' which I pray will soon become a service user empowered model as social model is rapidy getting outdated due to empowered service users who are fed up of being disregarded

Then went to a shop who is a local store not got any other shops I have been shopping in their for nearly 11 years. What a difference of attitudes. IF ever you are in leeds go to Hippypottermouse, as Cath and Kirsty who own it are incredible and I love the two of them to bits.

Store on rant is good old marks and sparks!! - grr!

Lea
xox
ps sorry for the typo's been awake for 27 hours solid.

I was in a shop recently with my wife: she enjoys shopping.

Alison had found the items she wanted to buy and we had begun to stand in line for the till. While we were waiting, about four or five people from the front, Alison noticed that the check-out assistant seemed to recognize me. As we shuffled forward she kept giving me knowing little glances; the problem was that I had not the faintest idea who she was.

Between us, Alison and I went through all the different options of places from where I might have known the lady. The list is rather long, but I couldn't place her in any of them.

It was our turn: Alison handed over her treasure to be scanned and packed and when the transaction was nearing completion, she stepped back to allow me to step forward and pay. I proffered my charge card, which the check out assistant accepted with cheerful grace. But then her face changed from an expression of pleased recognition to one that I could best describe as disgusted disappointment. "Oh", she said. "I thought you were Clive James".

You see, I really am elderly, bald and overweight, just like Mr James!

Your adventure sounds better than mine.

Andrew

I hate 97% of shops. Due to various inaccesability issues.

My top 3 shops though are
a) Hippypottermouse
b) LUSH (any store regardless of location including Philadelphia USA) as they are just awesome
c) Be Never Too Busy To Be Beautiful (which is the make up and fragrance side of LUSH which has only a few stores nationally but has had mail order for years, there is a store in Leeds )

LUSH & BNTBB staff are always incredible, they always go the extra mile, as companies they pride themselves on both products and staff.

Altho I tend to use LUSH & BNTBB via mail order as its cheaper as easier than lugging home stuff in a taxi or from the shops to a taxi cos of my arthritus, tendan damage & nerve damage stuff.

Lea
xox

I cant get near LUSH due to allergies. We have one in Preston, near my office and you have to go past it to get to the rest of the shops. Even walking on the opposite side of the road, if i dont take a deep breath and cover my nose i am then sneezing for a while afterwards. I am sure they have some great products but i cant risk them if just walking past the shop makes me sneeze.

I have KC, I never chose to have it and I choose to live life as normally as I can and as such follow the example of a guy I met through hospital radio (he used to collect requests from the wards and present the show before mine) who has sever vision problems and has a guide dog.

When he needs help he just says he has a vison impairment (it's surprising the number of people who fail to see that blind people have white sticks or guide dogs!), very rarely does he use disability.

Before I got the lenses I have now, I would have problems round stores and as such I would ask anyone who was near the entrance (they could be security, shop staff or member of the public) and say "I have a degenerartive sight condition can you please take me to a member of staff to assist me with my shopping?"

I've found this to be successful everywhere I go. The RNIB are very good on giving advice on getting around places and without them I'd never of got through my first year at University 20 years ago in London when I was registered partially sighted after my first graft.

I'll have to try and find the peom a university friend wrote after soemone tried to mug him when we lived in London. Basically my friend (confined to a wheelchair) who was wheeling down the canal tow path when a young man approached asking for the time. The next thing he knows he is being threatend if he did not hand over his money. My friend just pushed the would be mugger backwards and as he stummbled my freind rammed him whith his wheelchair knowcking the mugger into the canal. The mugger flailed around in the water slowly sinking and my friend just said who's disabled now?

By now people started to appear and were amazed when my friend slid out of his wheelchair and into the canal to drag the mugger out who then helped my friend back into the wheelchair. This was a life changing moment for the mugger who whith my friend went down to the police station to give himself up to the police. The mugger escaped a jail sentance and evere since has worked for a charity in London to help rehabilitation of opther offenders. He is now good friends with his once potential victim.

KC has introduced me to some very inspirational people and in my mind most people are disabled in one way or another, it just depends on the situation weather that disability becomes apparent.

I sneeze when walking past LUSH!

M&S I always found difficult because they make the edge of the step darker than the rest of the tread, as opposed to the normal convention of making the edge lighter.

Life was never easy, but for the visually impaired it can be a real challenge just to get through the day.

Andrew

I have always HATED witha imense passion the word 'disability' and since I can remember said 'focus on ability of difference' the only stumbling block tends to be when trying to explain to someone unfamilar with empowered service users, I tend to get rather stuborn and then as someone very close to me would always say 'yes you know your rights adn those of others, just ensure you get them met by whatever means society ends up making you'.

I am about to leave a post about a project I properlly begun yesterday, if it has no interest or is too off topic please ignore or remove it, I wont be offended.

Lea
xox

I am NOT disabled by y eyesight (or even my KC). I may occasionally be disabled by the stupidity and selfishness of (some parts of) society.
I am resolutely not "impaired"..
I hate the term "visually impaired" - it sounds like a bit of Nu-Speke for "ugly".
As in: "The view from Hackney Marshes is severely visualy impaired by the intrusion to the south of Canary Wharf and surrounding sky scrapers..."
If necessary, I just tell people "I'm partially-sighted " - and have been doing so for longer than I've actually been officially registered as such.
The thing that annoys me the most is the way some people - including some in the employ of the NHS - seem to assume that if your eyes don't work fully, then clearly and obviously, your brain doesn't ork either.
Excuse me! I'm partially-sighted, not bloody stupid.
As regards shopping, I tend to struggly on and wold everything to 2" from my face anyway. This can be interesting (and slow) when you're in a supermarket tryin to find a vegan cake to take to a "bring and share" supper with vegan friends.
And the reason I can never find the Marmite in certain supermarkets is the silly places they put it in! I mean, you have Marmite on toast for breakfast, so obviously it should be next to the marmalade and jams, or if not, then next to the breakfast cereals.
Rosemary

When I've had to remove my lens hence the 'part-time partial sight' - like Gareth I have found that by approaching someone at the entrance of a shop who is likely to be security and asking for assistance because I have a visual impairment gets me the assistance I need. In addition I'll put my badge on whilst my lens is out just to make it easier for me to ask for assistance and as a visual indicator to others.
I've had good experiences with M&S and Sainsburys.

I used to have terrible experiences in my teens in cafes with menu's chalked up and staff simply believing me, like why would I lie?! How embarassing it was as a youngster to ask for help.

Language can only ever be personal choice, whatever we are comfortable with. So we use the terms we prefer then it's up to others to use our preferred terms for ourselves. For me I don't mind saying 'partial sight' or 'impairment' and I do feel disabled without my lens because I can't do lots of things, and that's more distressing to me than the reactions of others.

I find airlines variable, they can be really bad.

I currently just walk around in a pair of sunglasses 99% of the time as waiting for another appointment wtihthe hospital and consultant at the eye clinic in regards to everything. Still waiting for somoene in the NHS to tell me more than a name and write it on a post it note for me.

I don't have enough thank you's to each and every person on this forum for their posts a month ago now when I was trying to sit here and process what I had been told, took me a while to register and post, but am glad I did. You are all awesome Never let anyone say otherwise.

Lea
xox