“She’ll run you over”

There are a lot of allegedly jokey comments that people make about or to me as a wheelchair user.  Usually well meaning and perhaps an attempt at being funny. They aren’t funny.  Most of them never were but one or two may have been if not for the fact that I hear them all the time. 

I’m talking about the “women drivers” comments.

The people who say “do you have a license for that thing?”

Those who randomly see me and go “no speeding!”

And many others.

I often roll my eyes at that sort of thing and let it go because it’s usually strangers and theres no point getting annoyed about that.  When one of the assisted travel guys at London Waterloo put the ramp down and after I drove down it went “who says women can’t drive?!” I asked him if there was meant to be a compliment buried in there somewhere. And he didn’t really answer.  But he was there to get me off the train the next time I went and just said hello.

The comment that really gets me though is made when parents on the street are trying to get their child out of my way. I heard it earlier today and yes the child was taking up space but it wasn’t a huge issue.

It’s “she’ll run you over if you don’t move.”

A lot of kids don’t know what a wheelchair is and don’t know what to make of them. I don’t like the nosy inappropriate questions I get from adults and older kids but if I have the time I was always answer young ones because it’s genuine curiousity and normalising disability (and in my case specifically wheelchairs) is important.
Even if you tell me to or give me permission to I’m not going to run your child over (and I have heard “I’ll let her…” and “I’ll tell her to…”before). Comments like that make my disability and my chair something to be wary of. I’m sick of being made out to be the big bad wolf to be scared of. 

I am not a threat to get your child to do what you want. Stop using me as one. I’m a person the same as everyone else – I just spend my life on wheels.

Y is for…

Y is for “you have got to be kidding me”

Today has been a day filled with aggravations and annoyances and has left me feeling pretty battered.

It’s all little stuff and bar two things it’s petty stuff – someone was thanking the key people involved in doing something and forgot that I’d been one of them. I popped quickly into Waterstones to look for a birthday present as I had a spare 15 mins and the layout of the store meant I couldn’t get into the section I wanted (too closely packed).  The trouble is it’s all today and no matter how petty something is and how unimportant in the big picture there all too quickly comes a point where all at once it’s too much to deal with.

And there’s some stuff in their about others expectations of me that I probably need to unpick a little to deal with.  But not today.

I did very much hit the point of thinking “oh you have got to be kidding me” when the last couple of aggravations hit.

There were some good things and I don’t want to pretend there weren’t.  I spent time with friends this evening and I got to chat with another friend on the phone. There’s a slim chance I’ll get to do something unexpected but very fun next week and I’m enjoying the book I was reading on the train. Plus, I got a copy of a book for free.

Had I been less tired and more with it I probably would have written something along the lines of “Y is for Yay I did it (almost!) and talked about this A to Z blogging challenge and what I think about it, what I’ve learned etc.  I’m really pleased to have made it practically all the way though the month and I think I will probably write more about that at a later date.

I don’t have the energy today (I barely had the energy to write this post)

Fed Up

I’m a bit fed up

of not getting actual answers to my questions but just a stream of talking that dances around the question

of not being treated with respect

of having to point out what should be really obvious

of having people blame things on my disability which in reality have nothing to do with my disability. Only thinking or saying “well she is disabled” makes it easier for them than having to accept and admit  that they fucked up.

of the fear that this time when they’re predicting snow will be the time when it actually comes.

of the words “but it’s your rent money that pays for that.”

of the excuse “not all wheelchairs are the same size” when it’s blatently obvious to all concerned that the dodgy ramp (or other access problem) I’m complaining about is going to be dodgy for me in my very slightly bigger than average chair but also for a parent whose five year old uses a tiny paediatric chair.

of people who complain about things on my behalf without actually seeing if I’m bothered about them

of people who make a big deal about the difficulties they’re having finding a venue I can access without actually checking with me 1) what I need and 2) When I’m the only disabled person whose been invited checking if I’m going to be attending the event.

of having to argue with staff at places I go to regularly because I know damn well they can do what I need for access but the staff member is new and doesn’t know what the choices are so is saying their system says no.

of people making eye contact with the person I’m with and talking about me and not to me until I point blank tell them “look I don’t understand what you mean by this and I’m the one who knows what I need”. and of that person seeming uncomfortable with that.

of being in my manual and having the assisted travel staff at a station I’ve never been to before asking my friends “does she want a push?” (that would never happen at a place I’ve been to before).

of going to shops with broken lifts.  Yes staff offer to get stuff for me but when I just want to go upstairs to mooch that doesn’t help.  Perhaps next time the lift is broken in waterstones I’ll say “yes I want a good look at your sci fi section.  Bring it all down to me. Every. Single. Book.”

It occurs to me as I’ve just finished writing this that I could delete all this and replace it simply with the words “I’m fed up of having to fight to be seen as equal”  but I doubt that would get the point accross.  And that makes me sad.

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Or

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

“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

>Poor little crippled girl

>I had a new carer tonight.  For so long now I’ve just had the same person that having someone completely new (and having someone who rarely does my care as I did last week) was strange.  Time was having new carers was my normal and I had my “new person” speech down to a t.

Now?  Not fun.

Didn’t help that several of her comments had me convinced that she saw me as a “poor little crippled girl.”  In fact at one point I disagreed with her over something and said “you’re looking at that from the point of view of ‘she’s a poor disabled girl'” which she denied.  Points being that it is “disgusting” I don’t have funding from social services, do my parents help me out at all (I said not really I don’t need them to often and having carers is better), do I see many people and do I get out often.

 I didn’t want to use my usual phrasing (the above) because I knew she wouldn’t get it and sometimes I just get so annoyed and frustrated being someone who people don’t get.  Usually that can just wash over me and I get on with it regardless but it’s happened a few too many times over the last sort of ten days two weeks. So it was best avoided.

Oh and when explaining why she became a carer she said it was because she got on well with people and she gets on well with disabled people too.  Because, clearly, we are some whole different species to the rest of the world.

Very frustrating.

But still better than last weeks comment of “your Dad must earn a lot of money.” when I made some comment about my parents being away last week (again in response to a question about why my parents don’t help me out more – as in do my support).  I just gave them a very pointed look and said “I wouldn’t know, it’s none of my business.”

As is always the way, after the event I mentioned it to a friend and she came up with the best response – just too late to use it.  She said I should have said “Why? Did they ask you to contribute to the cost?!”  I’m remembering it for the next time.

Because God only knows they’ll be one.  There always is.

>Accessibility, Bondage, Awareness.

>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.

>”I touched the wheelchair!”

>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.”

>Fallin’

>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.

>The mind boggles, it really does

>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.