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 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

I can stop blogging; I could never actually manage without somewhere to rant, to vent, to share my dissatisfaction with the world and to generally just let it all go.

Oh and to share the good things too

And, finally.  I am a wheelchair user.  I am not now, nor have I ever been, or will I ever be, a “wheelchair“.

This means that it is acceptable to say to me “you’re the last person we’ve got to help who uses a wheelchair.”

It also means that it is must assuredly not acceptable to say to me “you’re the last wheelchair.”

Someone actually said that to me earlier.  And really did not react at all well when I pointed out that I’m a person, not a wheelchair.  I think the point must have hit home but it was rather annoying.  Childish too.

I do, however, have to give huge props to the other person who was there during that conversation who understood why not to say that.  And who took the time when the other person went off to say “that must be really annoying for you” and to let me rant and to agree when I wondered how someone who works in the disability field and has done awareness training can say such things.

I like to think of myself as a self advocate and also to a certain degree a disability awareness / disability rights advocate in general.  But maybe I’m thinking too much of myself there when all I do really is all I’ve got to do to get by.

Anyways.

One of the things being an advocate (self or otherwise) means is that sometimes you’ve got to pick your battles.  Sometimes it means I argue things others might not understand and others I end up letting things go that I’d like to take further but I don’t have the energy/time/motivation to do so.  I would say the amount I am advocating is increasing and that generally I don’t regret it when I let things go.  In fact i can only think of two things over the last few years I really regret not following up.

Yesterday I went on a CAB training course.  I usually really enjoy them but I’m kinda regretting doing this one because it was very “eh” and I’m wiped out now.  The subject matter was probably very interesting but it was a bit rushed and not very well delivered.  In fact one term got mentioned several times and I still left with no clue what it meant (I looked it up in a legal dictionary in the bureau this morning and I know now what it is but I still don’t understand it).

The venue it was in is local to me (in fact it’s opposite our bureau) and it’s a place I’ve visited a lot over the years with the access group meetings being held there, CAB training and other town related events.  It has wheelchair access which isn’t perfect but it’s adequate, it does for the job.  Sometimes it can be a little annoying though.  Access has improved over the years and I know they are aware of their “sometimes annoying” issue.  It’ll be resolved when funding becomes available.

Basically one of the rooms can only be accessed either by going in through the fire door or cutting through either of two other rooms.  The fire door is not ramped and cutting through meets DDA requirements and in terms of fire safety the two connecting rooms have ramped fire exits and the fire service declared themselves satisfied.   It’s unusual for that room and it’s two connecting rooms to all be in use at once and usually people don’t mind if you just pop thru there session to go to the loo or whatever.  I’ve only had an issue with that once (connecting door was locked). and I’m there multiple times a year.   Yesterday one of the other rooms was free so we could use that and no one used the fire door.  It can be frustrating but it doesn’t register on my radar as a HUGE BIG DEAL.

The woman running the training yesterday was able-bodied (well, she briefly mentioned having a medical condition but she had no problems getting around) and she was in no way happy about the access situation.

She told me repeatedly that I was covered by the DDA in this situation.  To which I pointed out their DDA responsibilities have been fulfilled and I thought the access was something and nothing.

Basically it’s one of those things where it does get old but hell I can get in there I can get every where I need to go and do everything I need to do and it’s pretty much always fine.  that’s very much dependent on other centre users understanding that I might have to walk through there session but I’ll do my best not to do it too often or interrupt too much.  I’ve never had a problem with that before.  So given the number of places I really can’t get places that have minor issues don’t bother me.

The woman running the course told me that she’d be really pissed off if she was running a course in another room and a wheelchair user kept going in and out.  And she said that she would stop me (them) doing it because she thought it would be disruptive and inappropriate.  I can half see her point.  She also told me again that I/it was covered by the DDA.  And I shouldn’t be afraid to make a complaint about it under DDA legislation. I should complain.  She would make a complaint to the venue manager for me if I didn’t want to.  And she was pissed off for me.  I found it strange that as the disabled person I was the one arguing to a TAB that the access was fine.

If there’s one thing I’m not it’s backwards about coming forwards.  It was just, I didn’t really see what the huge big problem was.   And I’ve bigger fish to fry.
We had to do a venue feedback sheet afterwards and I did write on there that they could improve their wheelchair access, I always do.  I know that they know that.  But I also know that each time they get it flagged it helps them.

Anything more is just overkill if you ask me.

I hate February.  I have done for a long time.  But this year I was determined that “February is Fab” and I would do loads of fun things.  So far, however, not so much.

The Lion King on Sunday was absolutely amazing and it was really fun to see Trudi and go out to eat and catch up.  And I always like a wander around London, particularly the bit we were in.  We were headed back to the station about six ish and I have to say the sky line in the dark was spectacular as always.

It could have been a wonderful day.

It was a wonderful day.

But I hate the fact that I had to wait 15 minutes for help off of the train and I got freaked out about the possibility of ending up in the wrong place.

And I hate the fact that the person sat behind me in the theatre found it appropriate to moan at me that my wheelchair blocked her view and then to huff at me when I said that I wasn’t going to go sit in the aisle.  I paid for that wheelchair space, I bloody well was gonna sit in it.

And I really, really hate that it took me finding that man collasped on the ground and kicking up the biggest fuss ever before he got any help.  I can’t really describe how absolutely bloody terrifying that was.   I’m glad I found him and eventually managed to get him help; he’d been there an hour by the time I found him.  But I’m still freaked out about it now.

Most of all I hate the fact that, as great as the day was, as great as The Lion King was, no matter how much I adored the costumes and was blown away by the music - all of that, all of that wonderful stuff.  Is almost overshadowed, hidden even by all the disability related crap and scary stuff that happened.

I’ve been ill since Tuesday night.  I think it’s to do with how stressed out I got Sunday/Monday.

I don’t hate my CP; I never could.

But for the love of GOD, people, why can’t I have a grand day out doing something I’ve wanted to do for years (as this was) and just be normal.  The problem is society.  And always has been.  Disphobia, a lack of responsibility and ableism.
So thank you, society in general and staff of Waterloo train station in particular, for overshadowing my trip to the theatrre.  And for making scaring me, making me ill.

Last Sunday was the worst society hates disability day I’ve had if not forever than for probably at least in the last five years.   I have to try to leave my anxiety behind now, try to stop feeling nauseaous.  It’s not easy.

But I have to try.  They ruined my week, I’m not gonna let them ruin any more.

I went out to a local pub for lunch today; I go there on an irregularly regular basis with various different friends.  And for once in my life I was actually the first person to get there (I know! don’t faint).

I started pushing a chair away from the table using my feet and the woman who runs it came over to help me and she moved it well away rather than my just moving so i could get there and abandoning it.  She made a comment about them having different size/shape/design tables and that some were better for wheelchairs than others they had found.  I thanked her and said that we like the circular ones for just that reason.  And I asked her if I could ask a really random question.

She looked bemused but said yes.  So I asked if they had an alarm cord in their disabled loo (I knew they did but wanted to know if they were aware they did). She said yes they did and I went on to ask would you know what it sounded like if it went off and if she wasn’t there would her staff know and know to respond?  She did and she thought her staff would.  She also knew it should never be tied up off the floor or any such thing.  and she asked why I wanted to know?

I told her about what happened yesterday.  She was shocked.

Elisa came in and we got to chatting, ordered our lunch etc.

A bit later the owner of the pub came back.  She’d been to the disabled loo to check the alarm system.

And she discovered that the alarm system was place.  but that the cord had been CUT OFF right up on the ceiling.   So it could never be used.

She thanked me for asking the question.  And she swore blind that when her husband returned from the golf course he’d be sent off to get a replacement cord and to fit it today.

I’m going to write to Waterloo and complain about what happened to that poor man who I hope is OK now or at least safe and recovering.   And I think I’m going to write to a few other local places to.  just to check.  Start a little awareness campaign on the issue.

Finding him lying there and hearing him beg for help was really one of the scariest experiences of my life.   I can’t however get the thought out of my mind that it could have been much worse.  I could have found him and found him unconscious.  Or he could have been left there so long that when I found him, he had died.  or i could have decided not to bother with the loo and never found him.

So I’m thankful for just “scary” and “shocking” and not worse.

I really, really, really hate it when people use the term “neuro typical” in relation to their non CP-er kids.  I’ve also heard that term used to describe people who aren’t autistic.  And basically, it’s a term I hate.  What exactly is “neuro typical” anyway?!?!  I don’t think there is any such thing,

I’ve just found a term I hate more than that though… “neurodevastated.”  used in relation to neurodegenerative diseases and severe CP. Talk about ableist and disphobic!

Excuse me while I go throw up.

Dear you,

I know you’ll never read this and even if you did you wouldn’t understand it. But sometimes a girl’s just gotta get some stuff off of her chest.

If I need help I will ask. Don’t just stick your hand on my side without saying a word and then act all offended when I ask what you’re doing. Don’t assume that there’s a chance I’m going to fall as I’m transferring and that you putting you hand on my side just above my hip will prevent that happening. It’s just really rude, really off putting and substantially increases the chances that I actually will fall!

I know from a previous experience we had that you’re just trying to be helpful and that you don’t get it. I kept my cool this time.

Last time made you think I had an “attitude problem” I know and I couldn’t be bothered to deal with it this time. I couldn’t really be bothered to deal with you. Looking back I probably should have snapped at you to “get your hands off of me!” when you grabbed my wheelchair and tried to take over. But you know what, there are plenty of things I can’t do - let me do the things I can. And even more importantly in that case, my Quickie tips incredibly easily, I couldn’t take the risk of you reaching around and pushing me from where you were sat as you were. I didn’t want to hit the floor.

Thanks for going “what’s she done, what’s she done?” when you saw me and S talking to a first aider this afternoon. And even more thanks for going “she’s cut her foot!” to every other person in there when S told you. It was just a tiny bit of blood and no big deal for a toe walking CPer like me. Quick antiseptic wipe and a plaster and i was good to go. Getting it blown out of proportion like that was really annoying and difficult too.

If you must ask none of your business questions ask me! You tell me you’ve been a carer longer than I’ve been alive. You have relatives who use wheelchairs, I know one of them. Personally I thought this would be obvious to you but obviously I was wrong.

Please, difficult as it is for you, leave me to ask for help. And if I do ask, help me exactly as I say. Because if i ask for an arm to lean on whilst standing and you pull me from sitting to standing chances are I’m going to lose my balance (or not get it in the first place) and you might hurt me. I could plunk back into my chair instead of transferring or I could fall. Even more importantly you might hurt yourself.

~Me