>Michael Jackson, the goldfish

>My mum reminded me this evening that when we were really little my brother and I had a goldfish each.

I’d remembered that we had one…. my brother’s which was called Sally.  But I’d forgotten that I’d had one too.  Sally lost all her colour suddenly but lived a long time (years).  My goldfish which was called Fishy or Fishface (I was in to changing names, could never make my mind up) didn’t and I’d forgotten.

But then out at dinner tonight my brother’s girlfriend made some comment about the fact that Michael Jackson died.  And my mum went “which one of you two had a goldfish called Michael Jackson?”

I’m really not sure and want to say it wasn’t mine but my brother says his goldfish was always called Sally (to G, his girlfriend, asked “why Sally?” and we were all like “no idea”) and everyone else agreed.

So yeah, when I was little I had a goldfish.  It went through many names in it’s months long life.  And apparently one of them was Michael Jackson.

That’s almost one of the things you don’t want your parents to remember.

>50!

>One of my goals on my current 101 in 1001 list is to read 100 books in one year.  This is the third year I’ve attempted to do so through the now defunct 100 Books Club and I hoped that putting on my 101 in 1001 list would make me more likely to achieve it.  It’s a goal I’m hoping to get ticked off before the end of the year.  It’s looking pretty promising…

I just finished my 50th book of the year.  The list on this blog is out of date and in desperate need of updating (hoping to get to bed in a min but to do that tomorrow) but as of about five minutes ago I’ve read 50 Books and 15,793 pages this year.

I’m quite overwhelmed by books lately and I’ve been reading the shorter ones I have so that I can get through them, be more on track with the goal of 100 books and also to drastically reduce the pile thats to be read.  It’s worked quite well and I do still have some short ish books to read but I’m looking forward to tackling some longer books when I finish the two I have on the go at the moment (Silas Marner and Alice’s Adventures in Wonderland, both on my DS).

>Lose Sight Of The Shore

>Last year the big thing I did at sailing that was new to me was the regattas.

Rutland was the first one and it was great fun but it tested and pushed me in ways I had never expected.   I was overwhelmed by a lot of it as it was more serious than either my Dad or I had thought.  In hindsight, the big multiclass at Rutland probably wasn’t the right one for me to go to for my first regatta.  I decided not to go to it this year because it is so big etc.

Oxford was much more relaxed and more fun – it was smaller and it was at my “home” reservior and there was less sailing too.  But in many ways still a challenge.

I was glad I took part in the regattas but I don’t think they will be playing a big role in my life from now on… probably just the local ish ones.

In the entry I wrote about going to Rutland, I used the follow quote to describe it:

“Man cannot discover new oceans unless he has the courage to lose sight of the shore.” ~ Andre Gilde

To me that is about more than sailing and water (if it was ever meant to be about that in the first place). It’s about trying new things and going outside of your comfort zone.

And tonight I was thinking about that quote again.  As I finally achieved something many people have been encouraging and pushing me to do for a long time.

I sailed a challenger single handedly.

It’s actually the 4th time I’ve done it. But it was the first time I felt happy and comfortable and I enjoyed it.

The first time was a long time ago, last year at some point.  I was nervous and it was a bit badly handled.  I’m sure that I was fine but some advice I was given and add in my nerves and… I made it back onto the beach, into my chair and burst into tears.

The second time was 4 weeks ago.  I’d been refusing to try again but I agreed on the grounds that a safety boat would be with me.  I was really really scared and I needed that reassurance.  I never saw them and after 15 minutes was beginning to freak out so went in.  Everyone was really surprised when they asked if I enjoyed it and I said no but it was the truth.

Fast forward a week and I had a bit of a moan at some people about how I felt they weren’t taking my concerns and my fear seriously.   I also was very unsure about trying again and they knew.  They arranged for one of the guys to be in the safety boat right by me “hugging” me.  He sails challengers and is a nice guy, who was really encouraging to me.  It went ok but there wasn’t much wind so not much was achieved. Stalemate.

Last week I was sick and didn’t go but tonight I just did it. I was really nervous and I did have the same guy shadowing me a bit… I sailed a tiny bit alone then he caught up with me and then twice he went off and came back to check on me a bit later.  I got loads of tips from him and I feel like I learned a lot.

And as I sat there sailing on the opposite side of the reservior to the beach, going fast and with one of the sponsons out of the water (whcih makes me nervous), I thought of that quote. And I thought “I’m doing it.”

Fifty five minutes later, tired and sore but happy I came in.

I’m sure it’s not going to be easy as from now on… but I’ve achieved a long held goal.

>Song Lyric Game

>This is either going to go really really well or really really badly I can tell.

A few weeks ago I went searching for some song lyrics and came accross a thread on a message board where someone had posted the first line of a song and then people had posted the next one and so on as a game.  I thought it was pretty cool and I’ve been dying to try it out on my blog ever since.

So… here goes

“Well I heard there was a secret chord”

>You Know You Have CP when…

>… the four things you are most excited about are (in order of when they are happening):

  • Going to see Kate Adie give a talk about her experiences tomorrow night
  • Going out to eat to celebrate Sophie’s graduation/degree results next week
  • The My Sister’s Keeper film coming out at the end of the week.
  • A hospital appointment in two weeks.

And you even more know you have CP when you realise that if you had put them in order of how excited you are, the hospital appointment would be first or second (it was first but I’m really looking forward to tomorrow night so the closeness of that has temporarily pushed it down to second place).

Oh and the appointment?

Brace yourselves.

It’s for the wheelchair clinic.

And we all know what that means…

>Success of a sort

>Remember the entry I wrote for BADD this year?  Where You Least Expect It.  It was about going to my local pub for lunch and finding it had been done up and made less accessible in the process.

Anyway a few weeks after that I finally got around to writing a letter of complaint to the brewery/head office.

And today I got a reply.

He visited the pub and has instructed the team to measure up and install a ramp as soon as possible.  I am hoping this will be a permanent ramp and not a movable one (and if it is a movable one they put signs up saying they have it).  And I’m now planning to go for lunch in a couple of weeks and insisting on sitting up there.

So I’m really really pleased and hoping that things do happen as he says they will and that they happen quickly.

What I’m not so happy about is the comment in the letter about how they are not required to provide access to all parts of the building.

Hmm.

No, they are not legally required to do so but what is being missed here is the fact they had it and they took it away without thinking about it.  Saying that feels a bit like a cop out.  And as I wrote before I didn’t feel welcome there as I always had before.  Reading that line is a bit like “yeah, you are welcome… but not as much as you used to be.”

Oh and he thanked me for writing as it is the only way they have of being able to improve their service.  Or some such.  Never mind the fact that I shouldn’t have had to complain.

So to recap: I made a complaint, got the reply and they are going to put a ramp in.  This is so much made of win and I am happy.  However they managed to make it less so by certain inappropriate comments in the letter.

And on the scale of the three responses to complaints letters I’ve had this week:

Holland and Barrett lose for replying to my letter with a load of answering but not actually answering or doing anything stuff.

This letter came second for doing something but not enough or doing it well

And FGW have responded to my phone call with a “we know it isn’t good enough and we’re sorry, send us your tickets and we’ll give you a refund.”  It’s a standard response I know but they win.

>Well I was…

>…planning to write a long blog entry about lots of different things and thoughts and feelings and such like.

But I’ve had a major headache for most of the day and it’s only just now properly resolving.   Literally as soon as I decided I was 110% not going sailing tonight it went from feeling better to feeling a lot better.  Which is frustrating but totally the right decision because I’m looking forward to a day out on Friday and I didn’t want to push myself and go sailing tonight then not be well enough to do stuff the rest of the week.  Particularly not the barge trip Friday.

So I’m glad I’m feeling better but the whole not pushing myself to do something just in case thing is hard for me to deal with.

I still don’t feel like writing a long blog entry though.  So let’s just pretend I did.

>University etc

>Five years ago today I finished at uni and moved out of the halls of residence in Stoke on Trent which had been my home for four years and moved back to Oxfordshire.  I cried my eyes out and it was really hard.

Five years.  Meaning I’ve now been back here longer than I was there.  That feels pretty unbelievable.

In a lot of ways I feel like I’ve not achieved much in those five years.  But then when I actually stop and look beyond the surface level I know that I left university a completely different person to the shy girl who went there and today I am another different girl again to the one who left five years ago.

 Fatter, yes.  But also more grown up, more confident, a lot more independant.  And a hell of a lot more mouthy in my quest to stand up for myself and be a true disability advocate.

Some of those things are good things.  Some can only be described as bad.  One or two depend on who your asking for if they are good or bad.  I know most of the time I think my mouthy side is a good thing but equally most of the time my parents don’t like the way I go about it.  Occasionally I manage to say things and then stop and go “oh god that wasn’t a great idea.  That was much bitchier than I meant I’m sorry.”  Usually pretty much immediately if I’m going to do it but not always.

In a lot of ways I haven’t done the typical just left university things I anticipated doing like some high powered full time job, or finding my lifes partner, or being a really important business woman whose using her degree.  And I’m not using my degree.  But I’m independant and I’m loving what I do at CAB and the writing I’m doing.  I’ve got new friends and new hobbies and interests, some of which I would never have expected to be as big in my life as they are.  

And I’ve learned a lot about helping people and advocacy.  Five years ago I don’t think I knew that the word advocacy would be one I could apply to disability rights and my fight but it’s always been my dream and it is something that however small I’m achieving.  And writing has always been my other dream.  I’m not actively getting out there and giving my all in pursuing it but I’m chipping away at it and enjoying it.

 I know that what I’ve been doing has had an impact on others and in some small ways has made more of a difference to people than I perhaps realise.  And antidepressants are still part of my life but… I’m happy.

There are parts of my life that if I’d have been told five years ago would be here today (the medication and still on benefits) I probably would have been disappointed.  But having lived the past five years and looking at everything together… it’s been a great few years and again, I’m happy.

My sister got her degree results yesterday.  She got a 2.1.  I’m really proud of her and can’t wait to see photos of her graduation.  And I’m wondering where her first few years away from uni will take her and if she’ll be as content as I am.  Congratulations honey I love you!

>FYI

>If you feel the need to start a conversation with “I don’t mean to be rude but…” I really wouldn’t bother.   Because it will be rude.  And annoying.  And it will piss me off.   Or I will just sit there thinking how rude you are and generally just be bemused in a what the hell type way as I was on Saturday.  I got a panini for lunch in a coffee shop and a random older lady came up and “Excuse me I don’t mean to be rude but would you like me to cut that for you?”

And don’t just take stuff and do it for me, wait and be asked.  Also more importantly when you do just take my shopping off of my lap and put it on the checkout don’t then go off on one when someone assumes we are together and skips in front of you in the queue.  Because 1) I would have preferred you not helped me anyway and 2) Taking over is rude and frankly I think it quite appropriate that you had people do annoying things to you as you did them to me.

Finally I’d like to point out that I am wearing a skirt today.  And I am always aware of my clothes and catching on my wheels and things to be concerned about etc (unless its either new clothes or a new chair and I don’t know about specifics).  So 1) I don’t need you leaning out of your car shouting accross the road to me that my “dress” is going to get caught in my wheels.  Because obviously I checked I was right in thinking it was fine (and I was) but it is none of your business, very annoying and it makes me late because i get paranoid and stop every few minutes to check. and 2) i’m wearing a purple and orange skirt and a white t-shirt. It’s a skirt.  It’s obvious it’s a skirt. It’s NOT A FUCKING DRESS!

If you’re going to do the annoying unwanted advice to the crippled girl thing for the love of god at least get what you’re saying right.

>Worked up

>Twice in the last two days I’ve been all geared up to be really stroppy and a strong self advocate and really get my point made and things done.  Because with both things things looked as though they would be difficult (previous experience for one and information on the website for the other).  I was NOT going to take no for an answer.  And with the previous experience one (voting not being particularly accessible previously) I’d had several years of being annoyed for letting it go and voting in not fabulous situations with nary a complaint to be seen.

And both things have gone off without a single hitch or without my having to do any stroppy cow advocatey things.

Which, yay. Major yayness

But I’m now in advocate fight mode with nothing to do those things for (yes this is what we might call never happy).  I am of course really hoping that nothing comes up for a long while.  

I did get a business letter yesterday which needs a reply… and is really poorly written (which is another of my numerous complaints about said organisation most of which revolve around how they hell are they still in business and have they not heard of the term professional?! and are the reason why as soon as said issue is resolved I will have no more to do with them).  I’m tempted to channel my raaaarrrr-ness into replying with a corrected version of said letter.

I won’t.  Even though it would be sooo much fun to do so.

Oh and going back to the things I was worked up about… the second one they said normally they would do various checks and require stuff but they would skip it all for me because my situation is “clear cut.”

I was really pleased because I have no problem with their being checks and a system in place but what I objected to was the use of the medical model and the fact they talked about needing forms filled out by your doctor and all that.   Apparently however the website is out of date and now they do their own checks (meaning its more of a social model thing and done to prevent people taking the piss).  But for me I don’t need any checks they’ll just do it.

Must admit I didn’t think anything of it.  Until I told my dad and he went “why is your situation clear cut?”

oh.

Very good question.

What is it about my situation where I ring up and say “I’m not going to be able to manage the new wheelie bins. I’m a wheelchair user and live alone.” that makes them automatically  say I can have sacks instead and they’ll take the bins away and collect from wherever I want?  Most of which is what I was asking for (or planning to), some of which (taking the bins away for sacks) I didn’t think would be possible.

But more than that, what about all that makes it “clear cut” that I need this and yet others need to have visits to prove it and other stuff?  Some situations are borderline apparently and mine isn’t.  

I suspect it probably comes down to them being overwhelmed by people complaining about the new system coming in this week and doing what I did – managing on the old one but no way of coping with wheelie bins.  

From a disability rights perspective however, it’s crap.  Because for people like me it’s great… one phone call and (hopefully) sorted.  There is an argument that this is a bit “pity model” but lets not go there.  For those who can’t manage those magic words “wheelchair” and “live alone” (I suspect more the former) they aren’t as deserving and have more hoops to jump through?!

So, in conclusion.  Yay for not having to fight for things but them being done.  But things aren’t always what they seem on the surface.

I must make the point here that I would probably have not made such a big deal of this entry if I had been the one to think “why is it clear cut” rather than having my dad point it out to me.  My family are great but I tend to find that I look for disability stuff more than they do (and see it more than they do) so the fact that he wondered why and I didn’t seemed huge to me.  Of course he was probably just wondering why without going down the whole discrimination pity model and all that jazz path I did.