Hello

[allanah]

I don't know if any of you gave seen the new advert where a young man with hearing impairment is " set up " by his sister". He walks through his town and people have been shown just how to say hello, and one or two small phrases . For the first time he doesn't feel excluded. It gave me goosebumps and made me think when I am at my festivals this year I'm gonna learn signs for hello and can I help ( after that it's gonna be writing and pointing) but at least I will make an effort. I know done of you have experience in this and wondered what your thought were as I think all us stewards at voluntary places should at least know hello !! Ps it's a wave with thumb pointing to your head beside your face ,waving left to right.

Talking of exclusion what are your experiences of this with your RA? There are still a lot of venues , although it's getting better, that won't or indeed can't change their buildings for wheelchairs.

Just thought it would be an interesting discussion. ??

Hope u r all keeping well! X

[Hidden]

that's a good idea ,but you cant always know when some one has hidden disability I used to do basic sine language but found if you look directly at the person its easier to lip read its very interesting too when in a crowded room you would be surprised what you find out .interesting topic

[Chappy1]

Hi A. Yes I saw it on Facebook. Truly a lovely thing to watch.

When I worked at Hever Castle as a guide I tried very hard to learn sign language along with some of my colleagues. Quite difficult, but I learned a few essential words and felt very good when I felt I could use it.

Also my mum was profoundly deaf when she got older and even with hearing aids had great difficulty so I tried to teach her a few vital words which worked very well and lessened her feeling of isolation.x

[Hidden in reply to Chappy1]

I love Hever Castle Chappy! How did you manage all that walking?

[Chappy1 in reply to Hidden]

Hi. I had to retire in 2010 as I couldn't keep walking around the castle and especially the spiral staircases!! I'd been there for 15 years and it was the hardest decision I've ever had to make. Still miss it so much.

[Hidden in reply to Chappy1]

I bet! Such a beautiful place. I too lost my job. Would like to work but doing what? I'm unreliable even volunteering.

[Hidden]

Interesting - I posted a link about this on FB Allanah and agree it was really inspiring/ moving/ galvinising. As you know I have two profoundly deaf sisters so I do have some sign language and can communicate well with deaf people. I know very well how isolating deafness is. Human beings are made to communicate and deafness, more than any other disability apart from autism, impacts on this most important of human needs. Great idea that everyone learns a sign or two. When my RA was at it's worst, just before diagnosis, I went away for a family funeral and my sisters took me to a lecture conducted in BSL. I was greeted so warmly by their many friends, all deaf, but my splinted wrists and fingers could barely function re finger spelling etc. This made me think how awful RA would be for deaf people who rely so heavily on their hands in order to communicate. At the end of the lecture everyone waved both hands in the air instead of clapping and that really was a huge bonus for me!

I came home from Shetland on Friday and had a coffee with our MP in the airport. He had seen me in a wheelchair following my lumbar puncture a few months ago so commented on things improving now I only had a walking stick. He said that one of his wheelchair bound constituents had persuaded him that he should spend 48 hours in a wheelchair. He said this had been a profound experience for him - he felt invisible and worthless and out of control for much of the time because people wouldn't make eye contact and seemed to pretend he wasn't there at all. I was quite impressed that he told me this.

Not sure where I'm going with either of these stories but I thought you might relate to both anyway!

Txx

[allanah in reply to Hidden]

Yes defo when using my crutches people sometimes look embarrassed, and in a chair people shout! ??? And look at your pusher , mmm lol the person pushing the chair lol.

I loved that link and have suggested to Oxfam that we all learn a sign for this years season. Shame I'm not doing Glasto as " hello" by Lionel Ritchie might be good! but learning hello, can I help you and sign for toilet and bar and drink ! Seem good festival signs!

Your pm probably got a shock as he will be used to attention and to use a chair I bet he did get a shock, mine is coming around Easter!

[Hidden]

I thought it was quite a good sign that he had undertaken this experiment actually - shows he's not 100% a hard nosed politician although he admitted that he hadn't been keen to try it at all!

Oh yes and I need you to tell me about Costochondritis on my post about breathing A - can't open my mouth much today so hoping I don't need an inhaler - but I feel like I've got an elephant on my chest. The only way is up!

Txx

[allanah in reply to Hidden]

Oh no! I'll have a look !

[allanah in reply to allanah]

Can't see it T but costochondritis is very painful and is often apparently a devil to clear up. My Rheumy put me on steroids , 3 steroid infusions then oral steroids. I reduced them according to his plan and the day I cams off it flared back up! So he's put me back on them. The advice is also no heavy lifting or bending as well, there is an nhs page on it. He says it takes a while for the steroids to control it. He describes it as inflammation of the muscles and he says inside the bones!! Of the ribs do that take the steroids longer to get into your system. Very simple explanation but sorta makes sense!

I hope they get yours under control soon. I think it's one of those things that happen to ladies of middle age! And isn't always linked to RA . But a painful nuisance none the less if u get it severe. Do go back to go if it's not improving. Oh and cold packs really really helped the pain . Hugs xxx

[Hidden]

Oops can'tX find it now - will try and post it again. Only form of communication to me today as I can barely speak for jaw issues and breathing - what a bag of rubbish symptoms am I!?

[allanah in reply to Hidden]

You must know a lot about what helps then for us who don't have these restrictions and what simple things we can do !

[Hidden in reply to allanah]

Just easy stuff like thank you, great stuff, good night - very simple signs - and most importantly making sure your lips convey what you are trying to say effectively. Try practicing in the mirror. Treat as you would if you were staying abroad and try to have a few basic signs. Making good eye contact and trying your best rather than avoiding eye contact and running away as many do.

If you know you are going to be in the company of a profoundly deaf person it's a good idea to have a pen and paper too. X

[olive2709]

I grew up with a very deaf dad,because of we're he grew up he taught himself to lipread ,then later I picked it up it was a game to me landed me in trouble a few times bursting into giggles at a joke on the other side of the room . Kept me out of trouble as well my dad also had a blind aunt I admired her so much she taught typing I learned to find my way round the house in a blackout mask and use my ears from her. I was forces so moved a lot and in every house I put on my mask and found my way round came in handy

[Hidden in reply to olive2709]

that sound very interesting a bet you had a few bumps along the way we should all put ourselves in other peoples shoes from time to time you can understand a lot when you are willing to listen

[Hidden]

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