I wrote briefly about my Naidex 2008 experience in my BADD post for this year. But I also wanted to write more about it.

I just sent my friend Mary an e-mail and I’m going to copy and paste what I told her about Naidex in here because that’s just easier then trying to say it all again.

A dear friend managed to get the day off of work and went as well. So even though she lives here we traveled separately and I met her up there (only two wheelchairs can be on most trains due to health and safety and we couldn’t find a train with both spaces free but even if we had we would have been in different carriages so it made no difference).

First when I got to Oxford I was met by a member of staff who I’ve known for years as I travel there so often. And as always he made me smile and laugh. There was another person waiting for assistance onto the train I was waiting for and he was most decidedly trying to make it *very* clear that he wasn’t with me or with John (staff member), particularly when our conversation about the sheer number of people they’d had to help on trains to the NEC/Airport (same station serves both) that week degenerated into flying arm movements and John singing “I believe I can fly” to me. I also got told that I got the wheelchair space I’d been assigned was in first class which means I got a free breakfast (cooked to order bacon roll) and as many drinks as I wanted on the train. I got the same thing (but a free panini this time) on the way back.

Then wandering around the NEC and looking at all the new wheelchairs and other things was fun. But what was most fun was being in the majority for once. The fact that everywhere you looked there were wheelchairs and blind people and people with sticks and hearing aids. And that we seriously outnumbered anyone else. The fact that for once no one stopped us to ask stupid questions or spoke as though we couldn’t hear them. No one asked where our carers were and no one batted an eyelid when we were our silly outrageous out there selves. We did get some rolled eyes and laughs but no “oooh don’t do thats” and no “is that safes?!?!” Even when we decided to have a race on the way back to the station everyone just grinned and shifted outta the way. And when people remembered us it wasn’t “oh yeah the two girls in wheelchairs” but it was “oh yeah the leprechauns we already gave you our info” (Elisa wore a shirt which said “the leprechauns made me do it”).

When we laughed at the sheer number of things that had dolls or teddy bears in demonstrating how a person would use them people got it - and when we started joking about how the plight of these poor disabled teddies was hidden and must be brought to the world’s attention the people on the stands laughed too.

And when we went back to the station I had an hour before my train but the staff went above and beyond to try and find me a wheelchair space on an earlier train when they didn’t have to do that. So Elisa went home and I hung out at the station for a while longer. Another lady in a wheelchair tried to get on the same train (she hadn’t booked in advance as I had) and was extremely rude to the station staff - screaming disablism and threatening to sue. She tried to get me involved and I pointed out to her that 1) it’s a health and safety issue so that if the train crashes the emergency services know what the maximum number of chairs is on and where they will be and I am all for that idea. and 2) Being that Naidex is basically disability central I would never have considered not booking and I was just grateful they tried to get me home early. I don’t know what happened to her - but I do know that the staff were quite shaken up because I went onto the concourse to wait and they found me and thanked me for sticking up for them. They let me go wait in the first class lounge with it’s nice view and free biscuits and drinks and papers and nice clean disabled toilet.

I really felt very special by the time I got home.

One of the things I don’t think I have made clear properly either in this e-mail or in my earlier writing about Naidex this year is how much of a cultural experience it is/was for me.  The purpose of the day is not to feel like you are part of a huge group of PWD and that you are all coming together and having a shared experience.  It’s to learn about equipment and organisations and adaptations and all that jazz.  I have no idea if the organisers are even aware of how powerful of an experience it can be.

But for me - it is a powerful experience.  It blends in with my identity as a disabled person and it helps me to embrace my culture.  Being in the majority like that is HUGE.  And even though I didn’t speak to any PWD about identity or about culture and I didn’t really speak to many people other than sales people having a day like that every once in a while just really helps me.

***

Changing the subject slightly, but also not, I wanted to also touch on the use of the term Crip.

I am a crip.  Or a cripple.  Or whatever the hell I want to call myself.  Hell, I’m also Emma.  But just lately whenever I refer to myself as a crip or a cripple I get rubbish about how I deserve dignity and I shouldn’t belittle myself like that.  Calling myself a crip is acknowledging who I am.  It’s saying “yup, so what?!  I am disabled.  What’s the big deal.”

It’s a slightly annoying experience even though I know those who say that to me are well meaning and think they only have my best interests at heart.  We just don’t seem to see eye to eye on what my best interests actually are.  Part of me thinks I should start moaning when people refer to themselves as being able-bodied or healthy and see if they get it.  But then the realist in me knows that they won’t and they’d just think I’m weirder than they already do (not exactly a bad thing but…)

One thing I really love is slogan tops.  I am suffering at the moment from a shortage of appropriately sloganed tops.  And I have never had any disability identity or crip culture related slogan tops.  This is a situation which I am planning to rectify with some rapid action in the very near future.

At naidex I did see a couple of slogan tops - one only came in child sizes (or thats all they had) and it said “Wicked on Wheels.”  I really want that shirt!  I forget what the other said, it wasn’t as interesting.  Might have been something about staring?

Anyway so ever since then I’ve been toying with the idea of making myself  a top that says CRIP on it.  And then having an acronym underneath it.

One of my friends suggested Cool Respectable Independant Person.  And my brother suggested Carrots Rhubarb Ice cream Pasta.  but neither of those really appeal to me.

I also looked at the phonetic alphabet and it would be Charlie Romeo India Papa which is slightly more interesting and cool but still not quite right.

So does any one have any ideas?  Basically  years ago you used to be able to get those rip off FCUK tops that said Funky Cool Ultra Kinky on them and I’m thinking something similar something which screams “Em!” but I can’t think what it is

Today is Blogging Against Disablism Day. And it’s actually really tough for me to write about those issues today.

Disablism is something I face on a (too) regular basis. It sucks. Seriously. But today, for once, I got to be in the majority - I spent the day up at the NEC at a disability information and equipment show called Naidex. It really really rocks. I will write a seperate entry about it as I don’t want to mess it up.

I will just say this - being there is like being among “my people” and it’s brilliant. Leaving it all behind was tough but I did it with fond memories in my heart and a smile on my face. I still have that smile now. I hope I can keep it forever.

Unfortunately, we can’t all live our lives in a disability normal environment and I have to make do with this one day every few years. My smile won’t last forever. But I pray that one day someone like me will never have to have the bad that goes along with the good. Sure you can’t have all good, it doesn’t work like that. But some of the bad? It’s really, really bad.

I don’t want to spoil today with memories and the bad times so I will just share some links to my older posts.

[Untitled Rant]

A Letter Unsent

If…

My Wheelchair Is…

Sick and Tired

Incurable

Also, I didn’t write this post but I read it yesterday and it really struck me as relevant. Ashley Kate is a two year old who has had a lot of medical problems and has spent a lot of time in hospital. Her parents keep a blog for her and yesterday Trish posted a conversation she had with Ash’s older sister. I don’t think she knows about BADD but I just wanted to link that post here because it is so *right* for what we are trying to do - Conversations with Allie

And me, this time, too ;o)

The Guardian has an article on it’s website about Katie Thorpe - Whose Life is it Anyway? And they included an extract from one of my blog entries about her in it.

How cool is that?!?!

I quite like the article, I think it does a fair job of describing the thoughts and feelings of disability bloggers and of Katie’s mother. And it hasn’t degenerated into disablist language or such stereotypes, which had concerned me.

As I’m writing this there are two comments left on the article online and neither of them particularly fill me with joy. I’m waiting to see if there is any further response on the article before I comment myself (and also until I’m less “argh!” about the comments). They are the sort of comments I would expect to see but to me they are ones that seem to miss the point. Or at least the point I was making in my entry.

The point being that this could have been (and still might) be a very, very slippery slope.

I pray it won’t be.

I’d love to hear your views on the issues involved/ Katie Thorpe’s case specifically/ Ashley X / the article in The Guardian. They can be left in the comments.

However I will be moderating them and if this is your first time posting it won’t show up until it’s been approved. If you have commented before and been approved before, however, it’s business as usual. That is standard procedure on my blog and is not new today.

This here Wheelchair Princess spent the morning at the palace.  Blenheim Palace.

It was fun.  Absolutely fucking freeze your tits off freezing.  And the point in time when I spent 30 minutes having my photo taken without a coat on was bloody stupid of myself.  But it was fun nonetheless.

The palace and it’s surroundings are beautiful, absolutely breathtaking.  We didn’t go inside but we did get to go right up outside it and we got taken past a load of signs indicating that this was a private area.  How much did that rock?!?!

When we got back in the car to drive to the particular part of the grounds they wanted to do our thing I wondered why we didn’t just leave the cars and walk (at that point in time we were in the estate offices right by the gate to the grounds, not on the grounds.  Let’s just say that it soon became more than blindingly obvious just why they chose to drive!

This was the official drawing of a raffle that has been running for about three months (since Oct I think but they said three months so who knows?!).  The Duke of Marlborough who lives at Blenheim Palace is a patron of the Pontoon Project which the raffle was for.  And he donated the top two prizes so we went there for the drawing.

The Duke wasn’t at home this weekend (so unfortunately there is no tale of The Duke and the Wheelchair Princess but there is a chance that this project will lead to a similar but better type tale to be told late next year).  But the two people who have been most involved in the project and I went there and John (the Duke’s top man) did the drawing for us and we had photos taken with him and the palace in the background.

At one point I was sat really close to the palace and nothing was happening and I just turned myself in a full, slow circle taking it all in.  I hope to return in the summer when the Palace is open to the public and it’s possible to tour it.

It was majestic.  Truly it was.  There can be no other words to describe that place.

And how fitting that Winston Churchill was born there and is buried not far from there.

I feel blessed that last night I got a phone call “on the off chance” that I might like to go and represent the sailors.

It was sort of funny on the way home, I kept thanking Bill for taking me, thinking of me, inviting me and he kept thanking me for coming and helping…

What a blessing.

How amazing.

As some/all of you know I go sailing in Oxford and we are fundraising for a new more accessible pontoon. Tonight at 6pm our group will be featured on local itv news (Thames Valley Tonight) for the peoples millions and we need people to ring and vote for us to win a grant towards this. You do not have to be in this region to vote. The lines are open now and the number is

08702 437 801

You can vote up to 10 times from each number

Thank you very much!!

Emma

I wasn’t planning on this entry for a few more days but I got e-mailed a ready written version and I’m all about the lazy lately so here goes:

The Farmoor Reservoir Pontoon Project needs your vote to help disabled sailors.

This project has been fundraising for the past four years to provide a stable pontoon with improved access for disabled sailors. It will also create a larger harbour area which will benefit beginner sailors and windsurfers, especially youngsters, when the winds are stronger or are offshore. We have now raised £120,000 towards the Pontoon Project and are planning to construct as much of the structure as we can afford by next April, but we really need your help.

The Big Lottery Fund – ITV People’s Millions

The People’s Millions is a partnership between the Big Lottery Fund and ITV, in which viewers vote for the project they want to receive Lottery funding. Five grants of £94,000 are up for grabs this year in each our region and there are eight projects to vote for.

We have been shortlisted to take part in the televised competition with a chance to win £94,000 to pay for an electric lift to provide safe and easy access down to the pontoon. The lift will enable disabled people to use the pontoon under all wind and water level conditions. We will be competing head to head for the funding with one of the other eight projects.

Last week an ITV camera crew came to Farmoor Reservoir to film our disabled sailing activities in preparation for editing a short piece in support of the lift. On Wednesday 28th November, ITV Thames Valley region will broadcast short features on both projects during their evening regional news programme at 6.00 pm. The public will then vote by telephone for the project which they want to win the money – the loser gets nothing.

PLEASE VOTE FOR US!!

How to vote (You don’t have to be in the ITV regional area to vote!)

We need your support, so please watch ITV on Wednesday 28 November 2007 and then cast your vote. Ask all the members of your family and all your friends and neighbours to do it too!

If you can’t watch the television you can still vote. The voting lines will open at 9.00 am on Wednesday 28th November and close at midnight. We can only vote for our project on the day of the broadcast. The number to phone to vote for our project will be published in the Mirror, or on the Big Lottery Fund website: www.biglotteryfund.org.uk/peoplesmillions from 9.00 am. We will also send out an email giving the number on the Oxford Sailing Club announce list.

Please use your landline and mobile phones to help us win the money. You can phone up to three times from any number; best to avoid using a switchboard number! The result of the voting will be revealed the following day during the ITV 6.00 pm evening news.

Thank you very much.

All of us on the Pontoon Project Team at

Accessible Sailing, registered charity number: 1114130.

[Image description: Gone Sailing Logo. Black type on a white background. I think it's Times New Roman The top row says Gone with the O replaced by a wheelchair (in grey) and underneath it says sailing in a smaller size font. It went a little bit pixelated when I grabbed out of word and saved it as .gif]

Small note from me: I’m not overally happy about asking this but please, please pass this message on to anyone and everyone who might be interested. And huge apologies if you’ve already had this from me about six thousand times.

I was in Reading most of yesterday shopping so didn’t get here.  And truthfully, when I got home, I just couldn’t be bothered.

Yet again no change in my weight.

I’ve had this week off of work but don’t feel rested at all, it’s actually been pretty stressful as a result of what I got asked to do today.  I am looking forward to it but differences in attitudes have stressed me out.  :twisted:   I’m getting picked up in 10 minutes, more on that later.

It’s all pretty blah at the moment anyway. :evil:

If you are here from Tales From The Scales - Welcome. Or if you’ve been here before either from TFTS or somewhere else - Welcome Back!

If you never go to the TFTS site, go now. And check out This post. I’m the Loser of the Week this week!!

I won’t repeat the stuff I wrote from the site because you can go there and read it (and comment, and maybe, be inspired to join the new challenge?)

Beth has put both of the before and after photos I shared as one image and even I could see the difference there - so I will share that here.

Something I think I didn’t mention over on TFTS is how much the accountability and the wonderful support I have received has helped me and kept me going. Receiving Beth’s e-mail yesterday gave me a real boost and the resolve to make it a great day. So thank you Beth - and thank you everyone else!

I’m going to be Looking Great in 2008 (click the image for more details of the challenge). Why don’t you join me?

I’m doing another talk to the Rotary Club tomorrow. About the trip they sponsored me on last summer with JST.

I did have plans to write a lot here about that but the words don’t seem to want to come and I’ve been sat here with this screen minimised thinking (and playing chainz 2) for twenty minutes or likely more.

It does feel like that trip was a lifetime ago to be honest… and my focus is more on the one that is to begin on Saturday. But it’s always nice to look back in order to look forward.

This talk is another interesting to me thing - I used to hate speaking at engagements like this but now I love it and I’m looking forward to it. Another way in which I have changed, I have grown. And one I could never have anticipated coming too. I am still a bit nervous but it doesn’t scare me and make me shake and feel sick. Before it would have - in fact it likely would have made me physically sick. Instead they told me that I’ve got a half an hour slot as guest speaker and I just said OK then that’s fine, 20 minutes to talk and ten for questions.

It makes me wonder where I will be and who I will be in another years time.

Blogging Against Disablism Day is set to return to a blogosphere near you on 1st May 2007.

Information about it can be found at this post in The Diary of a Goldfish.

I’m not feeling very inspired today as I’m tired after swimming but this is/was my contribution to last year’s BADD. Blogging Against Disablism Day is the post that I wrote prior to last years festivities to explain what it was. And finally In The Deep is one of my favourite of my older posts (I hope that doesn’t sound conceited, I don’t mean it too) and explains why the fight against disablism is so important.

Basically the short version is that BADD is a great way to raise awareness, join together and maybe, just maybe have our voices heard. I’m in. Are you?