Sometimes I swear the world is trying to make me crazy (or maybe thats crazier?). And I am so SICK of all this stupid stuff thats been going on lately.  On my 101 in 1001 list (linked over in the side bar) I had write three letters of complaints as one (believe it or not I used not to be such a good advocate) and three praising good service.  I’ve sent more than three complaint letters since I set that goal in 2006.  But as for letters praising good service?  Nary one.

Also, it please me most of the time to be an advocate and stand up for myself and others.  I do think it’s very important.  But just lately I can’t help feeling and/or getting the impression that it’s making others think of me as something of a bitch who is never happy.  Being a constant advocate drains me a little at times too and now is one of those times.

I spent 20 minutes on the phone trying to book my assisted train travel to go to Milton Keynes on Wednesday.  The woman was insistant that the way I want to go (changing at Oxford and Coventry) wasn’t valid and that I had to get a train to Paddington, travel across to Euston and go that way.  I asked her how I was supposed to travel across London given that the tube basically isn’t wheelchair accessible.  She put me on hold and then came back saying that her colleague agreed with her that the tube is accessible at most stations, I can have help, they do have ramps and it would all be fine.  It would also be really, really difficult for her to arrange for me not to go via London.

I told her that as far as I was aware the tube wasn’t accessible and I didn’t want to chance it, please make the arrangements I had asked for.  She suggests I take the transport for London phone number and call them where they would tell me it was accessible and I could do it.  If they said it wasn’t, and she really did *think* it was accessible, I could call her back.  The arrangements I wanted would be difficult to arrange.

This, clearly was bullshit (being I wanted nothing more than I usually had I just didn’t want to go to fucking London and it;s stupid tube system) and I pushed her until she made them - she had to do it as two separate journeys - one from here to Oxford and one from Oxford to MK as otherwise her computer would explode or some such rubbish.

Sorted.  But then again she tells me the tube IS accessible she THINKS and suggests I call them (she’ll give me the number) so I can AVOID the HASSLE if I want to do the journey in the future.  At this point I should have told her the only hassle about it was her being so bloody minded and argumentative.

I told her I didn’t want the number.  And then I went onto the transport for london website.  Neither of the tube stations I would have to use to travel across London have full access - they are marked on the accessibility map as having no access in and out of them from the street but you may be able to change trains between certain lines.  Also, they don’t do ramps or booked assistance - the accessibility page warns that in some places the gap between train and platform can be 12 INCHES HIGHER!

Oh and out of 275 tube stations in London?  48, that’s FORTY EIGHT, have step free access from street to platform.

It’s a bloody good job I stuck to my guns.  But why she couldn’t accept what I wanted in the first place.

Maybe I should see if I can get one of those heavy old NHS standard wheelchairs and some bondage stuff (I hear they’ve got some good handcuffs in there lately!) from Ann Summers.  Perhaps if I tie the idiots I’ve been dealing with lately done so they actually are WHEELCHAIR BOUND they might get it.  Or at least stop be so bloody minded and start being more aware.

I deal with the public a lot and I know that the customer isn’t always right but clearly what she doesn’t know is that when I am the customer I AM always right.

Fact: I don’t like people to touch my wheelchair without my permission.

And earlier today at swimming one of the idiotic people there was doing stuff she really shouldn’t do with someone elses wheelchair - sitting in it*. As soon as I saw it, I was mad and I was ranting to everyone “that better not be my wheelchair, all hells gonna break lose if that’s my wheelchair.” Thankfully we soon realised whose chair it was - not mine. The person whose chair it was wasn’t happy but wouldn’t go and say anything. The same person also moved my chair later on because she “thought it would be easier for me” and I made her move it back because it was easier where it was in the first place.

There were also a couple of other incidents earlier in the week when people did really frustrating and annoying things (and really wrong on one occasion). Not all directly involving me but all affecting me. And at least one made me want to go “is that not obvious that rah rah rah”

So I’d kind of reached the point in time where I was like “people in general are annoying, idiotic, rude and stupid” and just the less I had to do with people in general the better.

Then my carer came in. I’ve known her for about three and a half years and she’s gotten to be a good friend. We both had had annoying days and compared notes. I was ranting at her about all of this and especially about the whole don’t mess with the wheelchair thing. I said “you know I don’t like people to touch my wheelchair.”

She said “I can’t resist” and reached down and grabbed my chair and went “I touched the wheelchair!” Laughing i pushed her arm off. She did it again, ran away and yelled “I touched the wheelchair!!” again.

And feeling better I laughed harder.

*the reason why sitting in someone elses wheelchair is basically a no go in my opinion is this - my Quickie which is my main manual wheelchair cost me £1200+ five years ago when I got it. It is my legs and without it I can’t move. It’s also set precisely how I need it to be. I don’t want it messed with and broken and I know people who have had their wheelchairs broken by others sitting in them when they aren’t around and busting them. Obviously, given my size thats unlikely BUT. I also have a memory foam/gel cushion in my wheelchair. It moulds to how you sit and “remembers” If someone else sits on it it can get messed up so the number one rule I was told when I first got that sort of seating was “no one else sits on it.”

I had a pretty spectacular fall about an hour ago. Definitely the only full on fall I’ve had this year I’ve lost my balance transfering and ended up not quite sat properly a few times and I’ve also ended up standing then losing my balance and ending up back in my chair without meaning too a few times. Those count but don’t count because I have caught myself on furniture or door frames or whatever.

Today I well and truly lost my balance and went. I’m not really hurt but I’m sore and I’m pretty sure I’m gonna be black.

It’s probably not the worst fall I’ve ever had; I’ve had worse thats for sure. But I managed to pull my Dad over with me (I was walking holding his arm) and I ended up half on the step, half off, on my back with my Dad on top of me. He caught himself though so he didn’t actually land on me. So it’s pretty scary.

And there’s lots of emotional and mental things that go along with it that have to do with the fact I scared my Dad by falling and he yelled “oh bloody hell” a few times as I was going and scared me and I thought he was mad with me and I was just crying and saying I couldn’t help it. And it’s all stupid and basically fine but it’s tough because as much as he stood there and kept saying that he wasn’t yelling at me I couldn’t handle that conversation then and it made me cry more. It doesn’t help that I’ve pushed myself a lot mentally and emotionally this week and although I’m slowly clawing it back today, I am a little low on mental spoons and maybe fragile.

I know I scared him and he scared me and there was no blame or whatever. And he wasn’t yelling at me. I know that. Rationally. But right now I need to regain my equilibrium. Hopefully when I see him tomorrow we can chalk it up to the “straw that broke the camels back.”

I haven’t actually looked to see if I am bruised (based on what I did and how I feel I fear I must be) and physically I’m pretty much fine. But I’m shaky and tired and…

Falls suck.

ETA: you know how I said I assumed I was bruised and how I landed half on the step, half off?  I got one really narrow line of a bruise going alll the way across my bum right where I hit the edge of the step sort of like i’d been lashed… i’m really stylin’!

And with more time to consider things, it all just comes back down to how people react.  If people are calm and all when I go flying like that I can stay calm but if they make a fuss I tend to freak… sort of like a child.  Of course, pain in this case probably would have meant tears regardless BUT it’s an interesting point.

I went into Reading today to do some shopping.  I was stressed out and depressed and by the end of yesterday knew that I had to escape today for the good of my mental health.  So I went to Reading.

It was your typical Saturday in a shopping town - busy and hectic and crawling with people and noise.  I saw lots of other wheelchair users.  Probably there weren’t any more of  “my people” in Reading today than there normally is but I was just more aware of them.

Because I had an encounter with someone who seemed to think there could only ever be one wheelchair user  *sigh* .

I get the train almost all the time when I go to Reading (occasionally I go with my parents and my Dad drives).  To get the train I have to give 24 hours notice of requiring assistance or journeycare as they call it.  And I also book a wheelchair space.

I’ve been using the system for so long and so often that the staff at my local station, at Reading and at Oxford all know me pretty well and we laugh and joke and we’re all on first name terms.  New wheelchairs, new haircuts, it being a long time since we’ve seen each other, that sort of thing all gets commented on.

It’s also kind of getting to the stage where I ring the call centre to make the booking and as soon as I give my name it sometimes changes the service I get.  They still go through the spiel they have to give to each customer for every booking but it gets changed to “i know your a regular but i’m required to tell you that…”  and the ins and outs get skipped.

I do however still wish that they would set up a system where I would have to give details of my wheelchair (size, type, that is definitely not a scooter, that i’ve used it on the trains before) and contact details and details of exactly what support/help I need.  That’s actually kinda amusing because they are doing a call back service to see how the journeycare worked for you and if you have any comments.  I travel so often that they are forever calling me.  And I always tell them the same thing - set up the system so I can just tell you where I want you and when I want you and not the same personal details over and over and over again.

Anyway, I just totally went off of my point there.

So Tony met me and got me on the train.  Got to Reading and there was no one there to get me off the train.  But there was a train manager type about to join the train.  Grabbed a passerby and they told the train manager who came and told me he was on the case and then went to find someone.

Eventually this woman turns up, never met her before in my life.  She told me to book assistance next time and she would be there when the train got in.

I told her I had booked and gave her my name and she checked and found me on her list - “Miss Emma Crees arriving platform 8 11.07 am”

Yup, that’s me.

She didn’t apologise.

Instead she left me gasping and wondering what she was on.

Because she turned to me and went “yeah you were on my list but I saw that there’s A MAN in a wheelchair over in the concourse and I assumed HE was you and I didn’t need to come.”

1. the booking said that I am a “Miss” which is a small hint that I am, in fact, a woman
2.  it also told her my name is Emma and I don’t know about anyone else but I’ve yet to meet a guy called Emma.
3.  it’s HER JOB to provide assistance and regardless she should have been there waiting for me with a ramp as requested and booked (particularly given the fact that Tony rang and confirmed that I’d traveled as it was a non reservable service so they’d know I was at the back of the train).
4.  And there can be more than one wheelchair user in any one place at a time.

I am so making a complaint.

As soon as I finish giggling that is.

How many of us out there blithely go off to the public disabled toilets in train stations, shopping centres, restaurants and other places?  How many of us assume that were we to fall or otherwise need assistance we could pull the red alarm cord, the light would go on and the bell would buzz incessantly and that help would come?

I’ve seen people respond to the disabled loo alarms in The Oracle in Reading (shopping centre) and I assumed it happened in most places.

I’m shocked, sickened, and even a little scared that it doesn’t seem to be the case

I was waiting for a friend at London Waterloo  train station yesterday.  Figured I’d pop to the loo.  There was a lady and who I assume to be her daughter waiting to use the disabled loo - and the red alarm light was on accompanied by the buzzer.  They were wondering what was taking so long and I pointed out the alarm was going off (it really could have done with being much louder).  The other lady said she would make sure a staff member responded to that and I returned to my spot by Burger King to wait for Trudi.   I thought the situation was sorted out.

15 mins later I’ve heard from Trudi that the bus was diverted and she’s gonna be a while.  Thought I’d see if I could get in the loo now.  The other lady wasn’t there but the alarm was still going off - I just assumed it was broken or they didn’t know how to turn it off (wouldn’t be that unusual).  Fished out my RADAR key and started unlocking the door.  A male voice called out from inside and i went “sorry!” and sat and waited.

Few minutes passed and I’m beginning to get concerned, debating knocking on the door to check if the persons ok but not sure I should.  The door opens partway and there’s a man lying on the floor.  He looked at me and begged me to go get him some help - he’d collapsed or fallen or some such and needed help - he told me that he had pulled the alarm cord.

He had been on the floor for an hour by the time he asked me to go find him some help.  And either the staff had already been told and not bothered or the other lady didn’t report it.
I left and went to find a member of staff, bumping into Trudi on the way and telling her the situation.  Stopped a guy in a uniform with a badge which said “passenger assistance”

he told me repeatedly where there was another disabled loo.  Couldn’t see to grasp that we weren’t worried about that but about the fact that one of my people was in trouble.  Eventually he got it.

His response?

“it’s not my job, it’s not my problem”  and off he walked.

We grabbed another member of staff and eventually made him understand.  It was a struggled but he did say he would deal with it - we saw him go off to the disabled loo and we left.  On to Italian for lunch, a visit to a bookshop, a wander through London and some of it’s sights and then the theatre.

I pray that he actually did go help that man.  On the way back to the station we were jokingly wondering if the poor guy was still on the floor.  I wish we’d gone to check; I wish we’d stayed that morning to be sure they did help him.

It wasn’t the only disability related drama I had yesterday.

But compared to the guy on the floor in waterloo my drama was really put in perspective.

Today is a tough day.  I am very glad it is nearly over!

I’ve been trying (and failing, I might add) to write out and explain the whats and whys and wherefores for some time.

The short version is the battery on my powerchair died on me in town earlier and I had to call in favours to get me home and get some of the things I was trying to do done like fetch my meds and do some shopping for me.  It was hard for me to ask for those and I felt pretty guilty that three different people had to put themselves out to rescue me and help me out.  Believing that I have CP, it doesn’t have me might be a great attitude to have most of the time.  But sometimes I have to ask for help and that’s not easy.

Then a right gossipy cow I sort of know eavesdropped on a conversation between me and one of my “rescuers”.  She could have just said to me “oh i don’t know if you know but disabled people can blah blah blah, that might be easier for you.” but no, I could told I should have done blah blah blah and saved my friend running around after me.

Yeah, thanks for that, love, I do guilt well enough on my own without you trying to pile more on me.  And the way you then told several people that my chair had died on me?  Nice, that.  Really nice.  Particularly as that’s the second time in a month you’ve  done the eavesdrop and spread it about thing to me.

I am very very grateful to have the friends that I do - the ones who rescued me today and the one who rescued me on Saturday when I locked myself out (my parents are on holiday).  Even if they do sometimes (today) tell me to shut up - because I couldn’t stop saying how sorry I was and thank you for helping me etc etc ad infinitum.

It might not be quite time for bed yet but I think it’s definitely time for chocolate!

Social Services are going to be stopping my support from them as I no longer meet the criteria. This all happened at a supposed “review” at the end of April.

And I got a letter from my GP and wrote to my social worker with a copy of this stating that 1) I wanted the decision looked at again 2) I felt the report didn’t show the full picture, particularly when it came to mental health issues - which my GP supported in her letter - and 3) stated in closing the letter that I looked forward to discussing this matter with her, in person, at a reassessment. I stuck closely to those three points but did provide some examples.

The reply came today. And it came from another social worker as mine has now retired. So I’ve never met this new one. She’s basically written what could be considered a reply but that’s too strong a term. It is, in fact, a letter designed to get me to shut up and accept the decision, whilst being thinly disguised as a reply. I’d think it quite clever if it wasn’t for the fact that as a tactic it sickens me and I consider it morally wrong.

She reiterates several things that my now ex-social worker stated in her report. She thanks me for “raising my concerns.” and tells me she is now dealing with “this matter”. All to be expected.

But then she tells me that I shouldn’t base the security of my mental health on services which might not always be available to me. And a load of other “your depression is getting better” false platitudes. The review took this into account I am told.

Then we get to the worst part I need to understand that as a busy and successful individual changes will come in my life, not all will be positive or welcome, and I must learn to deal with these changes. Not to mention the part where it is basically implied that depression is no big deal and that I just need to keep busy.

If I really want care I can use my DLA, it’s for the additional costs of being disabled.

Hmm… 1 hours support is about £14, DLA middle rate care is £40/week. I have 4hours of support. You do the maths. That doesn’t cover the costs of additional washing or heating or taxis because I can’t drive which apart from my paying a small contribution to the cost of my support was what I thought it was for!

We end with the comment my my ex-SW considered this a very positive move for me and the new one (henceforth to be known as that bitch) hopes her letter will have helped me to understand and accept it more.

So basically, I’m still not going to have support. The points in my letter were ignored and she is encouraging something of a “blame, shame and guilt culture” about depression. She probably also sat there writing it thinking she was wasting her time and sighing.

The other huge point is that she states in the letter I agreed that last year was the last one I would have support for - I WASN’T TOLD THAT! That interests me in that it’s at least the second time that an official agency has tried to stop a complaint from me based on their insisting on having told me something they hadn’t. Previously they knew damn well I wasn’t told and that if I had been told I would have no grounds for complaint - same as now. I proved it last time and I intend to do my damndest to prove that now.

Needless to say, she did waste her time. Because this doesn’t end here.

I’m off on holiday at the weekend. And then… get ready Bitch because battle commences at the beginning of July.

Picture this:

I’m sat in my powerchair at a t junction waiting to cross one of the roads. There are streams of traffic on both roads and so I’m waiting a fair few minutes. I’m also beginning to wonder if anyone is ever going to hang fire long enough that I can sneak across and continue on home.

So I’m sat there listening to my iPod waiting to cross the road. And this little old lady comes up to me.

“Are you ok love? Can you manage to cross the road or shall I help you?”

Well, that certainly never happened before. And lets hope it doesn’t again. People can tell me that “there’s a first time for everything.” all they want, but well, be that as it may, that’s an “everything” I could do without.

If the old joke about helping an old lady cross the road has been replaced by one about the old lady helping the woman in the wheelchair across the road I’m making a formal complaint. To the world.

And as if that wasn’t bad enough to have me sitting there going “my life has hit a new low point” another little old lady on a bike stopped to let me passed a bit further on. And she stopped in some stinging nettles *ouch* (personally I thought from previous experience there was space for us both which is why I didn’t stop) so obviously I smiled and thanked her.

She told me “that’s ok love.” and reached out and stroked my arm.

Yup my life definitely has hit a new low point!

It’s about four days since I last cleared out my spam comments folder for this site. And there were 164 of the damn things. Plus two comments that Akismet let through but my settings (first comment from any e-mail must be approved by me before it shows up) stopped.

I love Spam the food, particularly grilled in a sandwich. In fact I might have that for lunch. But the other sort of spam? Enough already?!!?!

Oh and nothing annoys me more than sitting there paging through all those 164 spam comments in Akismet reading about porn and drugs and things that make me squick and then having to go back through the list again because whoever designed askismet in their infinite wisdom put the “not spam” button at the bottom of the list but the “delete all” at the top!!

Jacqui said it best.

Ok, new policy for this site.

If you think a comment you left has gone to spam let me know. It does happen sometimes but not often and then I could stop looking at the spam just in case making us all happier.

OK, this is the deal.

My whatever they are calling themselves today department which we would otherwise call social services (they change their name so often it seems like they have a new name more often then I have clean knickers), classes needs into four categories.

My needs for support fall into the low need category and unluckily for me and all of the others also classed as low or medium need those two categories aren’t worth the paper they get written on because you have to have substantial need or critical need to get funded. I have asked for a copy of the criteria but as far as I understand it at present they fund personal care and help to make food only. My understanding is also that food they give you something like 15 minutes for something quick.

I require help to make food as my abilities go as far as being able to microwave food and chuck a tray of something light like oven chips or pizza into the oven. If it’s heavy or if it’s in a saucepan and I have to do it - it ain’t happening. I also have what they call domestic needs - help to clean and change my bed etc. I can use the washing machine independently. Domestic needs are low category for everyone and in their opinion I am able to manage well enough with cooking to not have support.

No one told me that I don’t have CP all of a sudden, so either I missed that memo or miracle or whatever happened or there is something fishy going on here.

So I queried whether I met the criteria when they reviewed it last year. And I was told “no but I did some fast talking to my manager to get you support so you could learn to be more independent” and that could no longer be justified. I wasn’t told that last year. After all did I want to be fifty and still having care?! I said it wouldn’t be a bad thing.

I am “just like every other man on the street she tells me too”. Woman obviously needs an eye test because my bras so big that Soph reckons they look like a pair of boobs by themselves proving I am a woman not a man. But I’m also sat there in front of her in a wheelchair proving that I am not just like every one else on the street either, thank you God because who would want to be?! Particularly if that meant I had to be like her.