“really nice”

There’s an acquaintance of mine who is said to be “really nice”.  We really don’t know each other well and I can’t say I have much desire to as we very blatantly have little in common.

A little less than a year ago they shared their view that my disability is tragic amongst other well meaning yet offensive comments. A few days ago in another conversation they asked me yet more rude questions and were in my opinion very inappropriate in things they said to another disabled person.

Here’s the thing: if they had made similar comments with a racist or homophobic slant that “really nice” label would soon disappear. The fact it’s about disability? Well that makes it ok.

Apparently

You Know You’ve Got CP When…

…the staff at the pub move a table outside especially for you and your friend (who is also a wheelie although not a CPer) to have lunch at.

We arranged to have lunch at the pub on the grounds that it’s lovely weather but somehow we both forgot that you can’t get up to their outside tables properly on wheels. If they were standard picnic tables It would be a bugger but doable. These are wooden tables with individual attached seats though.

Not wanting to miss out in the sunshine and lunch combo we pointed that out to them. The staff member took our order and said she’d see what she could do. I wandered off for a quick wee and when I returned they’d sorted it.

It was a lot of fun. And the food tasted all the better for being eaten outside 🙂

Things That I’ve Been Reading

This could otherwise be titled “the mostly Lord Peter Wimsey” edition. As well as these books I’ve read two I was sent to review. Those reviews will be up later in the week.

The Attenbury Emeralds by Jill Paton Walsh

This is the last of the Wimsey books. I don’t know why I read it out of order but I did. In fact I read it in one afternoon and really enjoyed it. One particular plot point really drew me in and got me worked up. This is the first book in a very long time that I finished and then immediately went back to reread bits of. However some of the language annoyed me as if it had been written by Sayers and published at the time I doubt it would have been included.

Gaudy Night by Dorothy L Sayers
A very long, quite good addition to the series. It focuses more on Harriet Vane than Lord Peter which I liked. It did have a serious lack of Bunter though which was disappointing. This is set in Oxford and it was fun to see places I know or recognise mentioned, I was in Oxford myself the day after
I finished it which added to that.

Busman’s Honeymoon by Dorothy L Sayers

This is pretty much a direct sequel to Gaudy Night and although I read it last year I wanted to read it again. I think it’s my favourite of the books. Enough said.

Thrones, Denominations by Dorothy L Sayers and Jill Paton Walsh

Not a brilliant book. It’s good but compared to the rest of the series it’s a little mediocre perhaps. I did love the subplot involving Bunter though.

A Presumption of Death by Jill Paton Walsh

This is a really good book. Back on form. I would quite like to read more about the Wimseys in the war but alas it doesn’t exist. Still, there’s always fanfic.

The Unpleasantness at The Bellona Club by Dorothy L Sayers

Back earlier in the series for this one as I didn’t have it originally. It took me ages to figure this out and I don’t think I had it down completely at the end in terms of the crime. Nice and meaty.

A tough week

It’s been a tough few weeks and although I’ve been able to pull some good out of this week and feel like I’m making progress again this week does feel like a tough one.  That’s probably an unfair thing to say but it’s how I feel.

I’m probably biased by the fact I’ve really had a crap day.  The morning was full of me being stressed about the afternoon, the afternoon and early evening sucked  and I felt very much like I was gonna crack up if this continues but after about half six the day got better.  I feel calmer and happier about things now.  In part I think I saw a few glimmers of more being done to resolve my biggest stressor in some news I got late today.

Unfortunately however it’s not something I can sort myself beyond keep advocating as much as I can.  And I feel very strongly that whilst I will blog about this when it’s resolved its inappropriate to do so know.  I have their attention. I want to keep it.

Most of the friends and family I have told have been really surprised and even angry.  There’s been lots of muttering about how ridiculous and inappropriate it is.  And the fact it’s easily sorted.

I’m having enough trouble with my own feelings on the matter. I can’t do anything else.

But… Tomorrow and Saturday are sailing days so I’ll step back, recover, forget about it if I can and regroup to start afresh next week. If two days focusing on wind and water can’t centre me again I don’t know what will

 

Things That Make Me Smile

Getting several phone calls and emails and similar “bits” done in one morning all of which have been hanging over me for days if not weeks.

Sitting outside reading in the sunshine. It was a book I’d been sent o review and not only was it free it was very good.

A long sail in the sunshine. It didn’t feel like there was much wind but I was able to keep the boat moving all the time. And once or twice I hit the wind just right and really took off.

 

Seeing a friend in the distance but not being able to chat. I’d have loved to chat. But I even more loved the reason we couldn’t chat was because we’d both exchanged our wheels for the water – and most importantly, the wind.

Party Memories (part one)

Small bullet point memories of my 30th birthday party.  I’ve been putting off writing this until I feel less depressed.  I do feel like things are moving forward from that point of view but they’re still bad.  It occurred to me however that I might feel better for thinking and writing about something very cheerful so here goes…

  • It was really, really good fun. I danced so much that my back hurt most of the next day.  That was totally worth it.
  • I’d really agonised over the venue because the party room and bar are on one floor and the two disabled loos are on another (right next to each other which I’m sure made sense to someone…).  There is a lift but I’d worried with the number of wheelchair users we might end up with there could be a big hassles with that. But unfortunately we couldn’t find another venue.  I think I invited seven other wheelchair users but actually the only other wheelie there was <a href=”http://stickmancommunications.blogspot.com”>Hannah</a>. So it worked really great from that point of view.
  • My birthday is actually Christmas Day so this was a very late party (due to Christmas being a rubbish time for any other form of party).  I never expected presents and if anyone asked me what I wanted I told them they didn’t need to bring me presents.  I got loads and loads of presents actually which I didn’t expect.  Some really great stuff too.
  • In terms of who was there I’ve been using the term weird to describe it.  Which probably isn’t the right one. Unexpected, probably is. Basically when I did the invites there were people I thought probably wouldn’t be able to come and others I thought for sure would come. There were also people who I thought wouldn’t stay long and others who I thought would be there until the bitter end.  But it felt like I was wrong on all of those. It was almost like if you were one of the ones I’d suspected (or in some cases they had said)  were coming for an hour or so only you stayed for way longer and one or two I’d figured would be first in last out were anything but.
  • Of my three cousins on my Mum’s side I’d been told two (plus partners) were coming but one couldn’t make it. What actually happened was the two I was expected both didn’t due to illness but the one I wasn’t expecting and his partner turned up and surprised me. Fun stuff and a very nice surprise!
  • Several other people who had said they were coming then didn’t come.  Some let me know not to expect them in advance and others didn’t. In one particular case I found out from another friend that they’d decided not to come which I was absolutely livid about (this was a few days before the party).
  • One of my besties wasn’t well and didn’t come but then popped round the following morning bringing (yet another) unexpected birthday present and an “unbirthday” card. Apparently her husband was very confused by the unbirthday bit as he didn’t know you could buy those. Somehow he missed that fact that card making is her hobby and she’d made it! She then stayed for a while to hear all about the party which was fun. I must admit when she rang however I was all “you can come so long as I don’t have to get dressed.” and I just threw some jama bottoms on while I waited for her.
  • My mum and sister made a massive chocolate marble cake in the shape of a 30.  They made two big roasting tins full of cake and cut it out freehand (using a template). 75 eggs went into the making of said cake bits of which I believe are still in my parents freezer.
  • Everyone gathered round in a big circle with me in the middle to sing happy birthday and for me to blow out the candles.  I think my brother had difficulty holding the cake for that… he certainly said it was heavy at the time.
  • They then did three cheers for me which was embarrassing but sort of fun and everyone danced to Chesney Hawkes One and Only which is my absolute favourite song.  Brilliant and the only time we had absolutely everyone dancing.

Wow actually I’ve gone into way more detail and said much more than I planned about the party. I’m really tired and I think I’ll save the rest of this for tomorrow to save writing a total dissertation in one blog entry.  Writing this has cheered me up and made me smile though… 😉

For Once

I have spent a lot of time and energy lately fighting two particular access fails. Both are pretty big things, completely ridiculous, impossible to ignore and in my opinion would be easy to solve if the people involved stepped back from their default “we can’t” reaction.

One, the problem with train access I blogged about last week, isn’t resolved to my satisfaction. But I know I’ve been heard and that they’ve made a plan to accommodate me.

The second problem needs a lot more time and energy to explain in full than I have. I do plan to blog about it but I don’t want to do so here as its not important for what I want to say.

I have been pushing this organisation (a small part of the NHS) for weeks if not months that their view that they can’t do something is ridiculous. I also pointed out that their failure to come up with any form of solution or alternative is discrimination.

This week I was talking to them about it again. They are finally hearing me it seems. And they’re looking into what they can do. From what has been said I think it’s not something they are taking as seriously as I’d like. However the staff member I spoke with said

“we’re getting more and more wheelchair users sent to us. You’ve made us think and made a difference for all the ones who come after you.”

Don’t get me wrong. I’m really pleased they now accept they need to sort something out and are working on it. Thats huge. I really don’t have the words to explain just how huge. At the same time however I know this won’t be sorted in time for me to benefit. Which really sucks.

I’ve been a guinea pig, a trailblazer, the first disabled person we’ve had… etc etc my whole life. More than once my family or I have fought for something I needed only to have it materialise too late for me (the lift at my school being one example, there were two of us in chairs in my year and the year before we started our families started pushing for a lift in one particular buildings. We were both their five years and the lift was installed a week after my final GCSE. I did my a levels elsewhere). Being a fighter is hard work. I do it because it’s in my blood and I have to. If I didn’t fight I wouldn’t do anything.

But for once in my life I’d like to be another sort of first person. I’d like to be the first of the people to come along after someone else has fought and things have been resolved. I want to be the “next” crip rather than the “militant campaigner” crip.

Right now it seems like that might be too much to hope for.