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

>A week in the life of a moaning minnie constructive complainer

>I’ve sent multiple e-mails of complaints about things this week.  I’m a complainer and I kinda like it because if we don’t complain how will things change?

I e-mailed my care agency and really threw my toys out of the pram so to speak over an issue.  They reply that they have noted my comments and will be discussing them.  Good.  They didn’t apologise which is a little annoying but given I fully expected (from past experience) they wouldn’t reply…

I did kinda feel like I was going over the top in what I said but it was what I felt and sometimes making nice doesn’t get results.  The thing that I find interesting here is how everyone I’ve mentioned it to who is also disabled finds my comments fair game and everyone who is able-bodied who knows of my wording has exclaimed in sheer shock that I would say such things to them in a complaint.

Then I e-mailed the theatre in Oxford.  Their lift is broken and has been since October (or at least that’s when I found out).  It has to be replaced and is supposed to be “top priority this year.”  They have a ramp they put down on these stairs (seven of them!) and take you down.  It’s horrible and they manage but I question it’s safety.  And mum and I have tickets for the end of next month.  For the farewell tour of Riverdance.  I’ve never seen Riverdance and I really want to go – I’ve seen Lord of The Dance amd loved it and I want to know how to two shows differ.

So I e-mailed them and said pretty much that the ramp sucks and makes it basically impossible to get to the loo in the interval.  Will the lift be fixed for riverdance?

Their response?  They apologise for my “obvious discomfort” and admit they are trying to have the lift replaced but it’s expensive, being “completely honest” she doesn’t believe it will be fixed by the time Riverdance is on.  It’s not policy to offer refunds but in this case if I want I can have one.  And they will keep me informed of developments if I’d like (I intend to take them up on this).

That’s such a great response.  I don’t think I will take the refund, it’s my last chance to see the show and it’s not on anywhere else local.  But as I wrote in my final complaint of the week what I need about access is total honesty because it allows me to be prepared.  I was very pleased by this response even though it obviously didn’t give the answer I wanted to hear.

I don’t usually complain this much in any one week but this week just forced my hand.

I went out to eat with a group of people this week.  The group had been to the venue before but before I joined (I’m the only wheelchair user) and I’d never been.  The organiser and I both separately called and checked about access.  I asked pointed questions and probably for more detail than the organiser but we were both satisfied there was level access and a disabled loo.

Well, they were 50% right/honest… there is a (pretty good but not great) disabled loo.  But there’s also a step to get into the building and one into the bar.  Then to get from the restaurant (which is step free) to the disabled loo?  Up the step and through the bar.

They got staff to help me and from that point of view, OK.  But I’m not a child and I shouldn’t have to ask to be allowed/taken to the toilet like a child.  I was ranting about this to several of our group when we were there but wish I’d just said it to a staff member.

I did have to crack a small smile when one of the people I was with went to find a staff member for me and returned saying “Emma, I’ve found you  NICE YOUNG MAN to help you.”  But only a small one, it was a pretty tough night.  The food was nice and it was nice to see people I rarely do but… put me in a situation with poor or no access and I panic and get anxious.  Fun times.

And after helping me to the bathroom said nice young man disappeared and she had to hunt him down again to help me back to our tables.   Mum did say that’s a difficult one because what is appropriate, wait outside or go off?  I agree with that and it may be he intended to go back but we were faster than he thought.  But she also (my mum) said at least they tried and a lot of pubs don’t.  I don’t really care about that.  Although I must say I’d have been a lot less annoyed if they’d just admitted “we’ve got two small steps but can help you if you want” when I’d called and asked.  I probably wouldn’t have gone but if I had I’d have been prepared at least.

So I sent them an e-mail of complaint and pointed out to them that their steps could be easily ramped and not doing so breaches the DDA.  And I told them how i’d felt infantilised by having to ask to go to the loo.  The biggest thing I tried to get accross was about how what I needed was total honesty and how I’d have been less annoyed about access if they hadn’t lied.  But without undermining my points.  Not sure if I was successful.

The other thing I didn’t mention to them because I’m not clear on is the fact I think by lying (or not telling me the full picture whichever you prefer – although I’m sure I did ask specifically about level access) they have broken the Sale of Goods Act.  Because it states specifically that “goods and services should be providing as described.”  I have a question in to Trading Standards about that for future reference although I haven’t given them details of which venue it was as I don’t feel at this point I need go that far.

The reply I had from the restaurant/pub was the usual we’re sorry you weren’t happy.  They say they’ve now told all their staff to make the exact details clear in future and will be considering my comments etc etc.  Intention of staff is to help not demean or embarrass which totally misses the point that simply by having to ask for the help means announcing to the world that you need to go to the toilet and that is demeaning in and of itself.

But they also end the e-mail by hoping that now I know what it’s like there I’ll have the “confidence to return soon.”

Um, no.  Are you freaking kidding me?!  Either that’s one of those stupid “things people say when closing letters and e-mails fake platitudes” in which case totally irrelevant and inappropriate.  Or they totally missed the point of my e-mail.

So to sum up in closing, I will always be making complaints because how else will the world change.  And when you reply to me I prefer you to be completely honest and to think properly about what you have to say.

>Amongst all the drama I forgot to title this post!

>Soooo much drama today it’s unreal. And it’s left me with no energy.  So all in I’ve gone from really excited about some possibilities to kinda low.

The short version:

Fell out of my wheelchair, bruised my bum and bashed my shoulder.  Pretty sore as a result.  Situation normal.

Mentioned it in passing to my carer and whilst falls might be just one of those things to me she then spent the hour she was here trying to convince me to go see a doctor.   And when she realised I was having none of that switched to trying to convince me to let her get a doctor out to me.  Oh and she thinks she will need to let my care agency know I had a fall (even though she wasn’t here when I fell and it was literally about six hours before she came).

She then went to leave and discovered her bike had been stolen from right by my front door.  So she was here for ages longer sorting it out.  She apologised loads for that (I told her not to worry about it) and did ask if I minded.  And I don’t really mind that but falls are draining.  So was arguing with her and then that, it just topped things off in a way I didn’t need.

Basically, I got the caster on the front of my chair snarled in something (a button that came off of my coat or a pen were the only likely culprits) and it stopped moving but the momentum carried me (and my cushion/dycem mat) out onto the floor.  The chair was still upright like usual and all that.  And I was still sat down.  Just on the floor.

I usually tell everyone that I can get myself up when I fall and if you ever find me on the floor unable to do so that’s when it’s time to panic and start worrying about doctors and all.  My mum rang while my carer was still here (having heard from my Dad that I’d taken a spill).  I said to her that I was bruised but OK but that my carer was worried I should see a doctor.  Mum’s response was what I thought it would be “wouldn’t bother”.  I really don’t think my carer understood but I told her that if I saw a doctor everytime I fell or nearly fell I’d spend more time there than anywhere else.

I’d really hoped this year was going to be the year when I didn’t fall out of my chair.  So near… but yet so far!

>”I’m NEVER doing that again.”

>For reasons only known to one person and one person only instead of getting the train to Oxford on Saturday I was sent in an accessible taxi.

I’d had a phone call from Oxford Friday evening to say their lift was broken but they could let me out of another door (not public use normally) which would avoid my needing to use the broken lift.  Would that be a problem?  And I said no so long as they showed me where I was going as it would mean I was leaving from completely the opposite side of the station.  Fine, she says, I’ll walk you round to the front of the station – the path is accessible but not great (I don’t know it).

Ten to eight Saturday morning my landline rings.  And wakes me.  At that time of the morning my thoughts were 1) I’m not getting up. and 2) oh my god someone’s died.  still not getting up though.  terribly sorry you’ve died though whoever you are. But I’m still not getting out of bed.

Half an hour or so later it rings again.  And I dragged myself out of bed and called them back noticing with no little relief that it was my local train station that were calling me and figuring they’d keep trying till they got me so the only way I’d get more sleep would be to call them back.

And I was told that the lift was broken and I’d be going to Oxford by taxi.  I queried it as Oxford had already said they could cope but was told it would be easier if I went by taxi as otherwise I would have to be pushed round the station.  Which makes no sense as I all but always go in my powerchair (I’ve only been on a train in my manual chair once this year that I can think of – well, one occasion but that was about six trains what with travelling both ways and all the changes), but whatever.  And the taxi would drop me wherever I wanted in the city centre, just name the place. Oh and don’t bother to get a ticket (which also didn’t make sense whenever I’ve had a taxi instead of train before they’ve insisted on seeing my ticket)

Great.  Not what I had planned but this is shaping up to be good I think.  Back to bed for half an hour.

So i get to the station and one of the journey care assistants came over to meet me and we wandered back out chatting a bit (chocolate’s bad for you she tells me as she catches up to me as i buys some).  Just as we got there the taxi arrived and he starts getting me in and secured.  The accessible taxi here is something i rarely use and whilst it does it’s job it doesn’t really have enough head room for me (only just) so I wouldn’t want to do it often.

Start with a five minute delay while he panics and searches the car for his pen which he’s lost.  Eventually we start moving only to stop by the taxi rank at the other side of the station car park.  He speaks to another taxi driver and they leave their car to search for a pen to lend him.  Crisis over we eventually pull out of the station.  And it’s almost immediatley obvious that he’s a typical taxi driver with the weaving and bobbing in traffic he’s doing – and that he missed the memo about driving smoothly (no sudden acceleration/braking if possible) when you have a wheelchair user in the back.

Where do you want to go he asks.  I named one of the biggest, poshest hotels in Oxford.  It’s probably the most well known and near to where I was meeting the NaNo-ers and is on a road with lots of on street disabled parking.  I know it well because my Dad almost always drops/meets us there.  He said he had GPS but didn’t know where it was.  So I asked to be dropped at the Playhouse – a little further down the same road.  He said no he didn’t know it.  And no I said, I couldn’t give him directions.  You’re the taxi driver love and I don’t drive (I didn’t actually say that but I thought it).  So I know Oxford as a pedestrian.  What about the New Theatre or the Westgate (shopping centre) – nothing doing with either of those.  I was rapidly running out of places in the city centre where he could drop me.  So I suggested the station but he didn’t know where that was either.

And I couldn’t think of anywhere else outside of the pedestrianised zone.

So he says “I drop you at Starbucks.”

The only starbucks I know (other than the one in borders) is in the pedestrianised zone so I pointed that out to him.

Driving through Oxford I was following where we were going.  Which was a really good thing because he dropped me at a tiny out of the way starbucks I’ve never seen before further away from the main shopping streets than I usually go.  And he announces he’ll drop me there.  I’m like “OK” just wanting out of the damn taxi (I don’t get car sick but I also usually transfer out of my chair into people’s cars rather than being clamped down  and I was worried about where I was going to end up).  

Oh, we’re on the wrong side of the road he says.  Which we’ll add to the list of things that didn’t make sense given that there was somewhere to stop and the ramp came out of the boot.  I’m just going with it though and assume he’ll go further along, find somewhere to turn and go back.

But then came the moment.  The one that had me going “Mum’s going to get a phone call saying I’ve died.  I’m actually going to die”

This is a busy road in Oxford, there are buses and taxis and bikes and people everywhere.  And he just pulls out and does a u turn in the middle of the road.  You’ve never heard that many drivers shouting or horns going off as at that moment.

Finally getting out of the taxi I had to walk in the wrong direction on the road for a short distance to find a dropped curb to get on the path.  Then I walked back past the taxi.

No sign of the driver, the doors and boot still wide open – and the ramp down.

I can only imagine there’s some major reason why he had to drop me at Starbucks and no where else – and why he disappeared like that.  I’m guessing he’d gone for a fix of some kind.  But I’ll never know.

And that, my friends, is the reason why when asked if I enjoyed my chauffer driven trip to Oxford at both stations on my way home (Oxford and here) I ranted about taxi drivers and said “I’m NEVER doing that again.”

And why, should I find myself told the train to Oxford is out for me (or as in this case more difficult than usual but still doable) so they’ll pay for a taxi again I’ll be considering how vital my journey is.  And whether I might not prefer a trip to Reading instead.

>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.

>Irony – wheelchair stylee

>When I first got my quickie five years ago the footplates were literally the bane of my existence.  I have no idea how many times they broke but it was many many and it seemed to happen every couple of weeks.They bent out of shape, they snapped off (repeatedly), they wouldn’t stay up when I folded them.  Then I stopped using it for maybe 18 months.  

The kuschall which I switched too wasn’t great for me and Mum doesn’t like it.  To be honest I’m glad I gave it a try but it’s not a road I’d go down again.  My cousin was getting married and we knew the access wasn’t great.  We also knew that the Kuschall is a nightmare on rough ground and we’d struggle and I’d probably fall out of my chair (which happened anyway with the Quickie but thats another story).  So we were debating the issue and we decided to give the Quickie another go.  So last September they put a completely different sort of footplate on and I’ve had no problems with them since. I think possibly the sort of footplates I have on it aren’t supposed to be on the exact model I have but they WORK.  It’s been my full time manual chair for a year now.

Ever other removable/replaceable part on the chair, however, has since slowly broken and the whole thing is currently undergoing a major overhaul, the situation having culminated in the seat ripping the other week.

How ironic is that?!  Two and a half, three years where the footplates broke so often that a month with no problems was a shock.  And now the footplates are the only part that is coming back unreplaced.  I find that very amusing.

>Alarms and Human Responses

>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.

>”save yo’ drama for yo’ mama”

>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.