Not five minutes but five weeks

Today is Blogging Against Disablism Day.

For the last five weeks I’ve been dealing with a somewhat ridiculous access situation.  What I actually need should be incredibly straight-forward. I need to be weighed.  I am not allowed to go sailing until I can confirm my weight to the powers that be. That’s because they’re checking equipment safety. I have no problem with that. 

You can buy scales in Argos for less than £30. But as a wheelchair user it’s not accessible to me. The accessible scales you can get cost over £1000. You can go to the GP to get weighed. I can’t. There isn’t considered to be a need for accessible scales.

 I’m told I don’t need to be weighed,  I can track weight gain or loss through measurements or how my clothes fit. I’ve been having versions of this conversation for years.  But I do now need to be weighed.  To keep me safe and more importantly to keep those helping me at sailing safe.

This whole situation is ridiculous. No one who might be in a position to help seems to want to help.  Those who offer help can’t do anything. 

People have led me to believe access was available when it wasn’t. People haven’t understood what I need and then got annoyed when I corrected them. I’ve been asked three times in the space of one phone call “you cant stand on the scales?” I sent an email to somewhere that we think can help and their admin person replied that they had passed my query on to the relevant person. This is somewhere that request email is used if possible.  Three weeks later I chased it and got what boils down to “you know we’ve had your email, shut up and wait” in reply.

I don’t usually have “if I wasn’t disabled” on my radar. It’s not healthy and it’s not necessary, as a CPer life on wheels is all I’ve ever known. But there is no escaping the fact that I’m currently five weeks and counting into trying to find a way to do something that were I able-bodied could have been done in five minutes or less. And I don’t know when it will be resolved.  

“Well”

Earlier this week I was talking to an acquaintance who was saying I handle things very well.  They’d been around when I’d found myself struggling with access woes a while ago and been impressed with how I handled it. It’s not the first time since that this has come up. They mentioned that I’m not the only disabled person they know and the others get angry in ways I don’t. I think it is – or was meant to be – a compliment.

I’m not sure I did handle it well. I’m not sure it’s a situation that can be handled well – life doesn’t come with a handbook for what to do when yet again the wheelchair access you’ve been promised isn’t there.

And these are situations that often seem to end up with victim blaming “oh well we weren’t planning to invite you but we had a spare space” was one line I heard last year “We don’t get many wheelchair users” is another I’ve heard many times before and of course there’s last week’s “you’re using the wrong door“.  “Trying to do something nice for you” “my brother’s best friend’s mum’s sister uses a wheelchair and she can manage” and many other comments along those lines have been said over the years all of which give the idea that it’s not actually the lack of wheelchair access that’s the problem, it’s me that’s the problem.

So sometimes I handle something quietly and with a calm I don’t feel.  Because whilst I’m not worried it’ll cause a scene but the memory of that victim blaming cuts deep and can’t be forgotten. I don’t want people to stop inviting me to things because of that and some reactions have made me worry that might happen. Or because I might start crying if I don’t.

Occasionally experience has taught me that in those particular circumstances things might not be ideal – so I’m prepared for shit access. And nothing helps you handle it well better than a complete and utter lack of surprise.

But there are two other reasons why I may be reacting to an access problem better than you expect.

Because this my normal. And sometimes you’ve paid the money, looked forward to the event and made the journey. You’re there and you can do nothing but make the most of what you’ve got.  Do what I can, enjoy what I can and consider afterwards whether it’s a lesson learned, a don’t go there again, a complaint or an “actually that worked better than hoped.” Because sometimes, rarely, but sometimes nonetheless people are faced with a wheelchair user struggling and access being worse than expected and really come up trumps with help and solutions to improve things.

Or perhaps I’m just exhausted. Tired of having this problem all the time and lacking in the energy to make a fuss once again when it’s unlikely things will change.

 

 

An Evening in the Pub

I wasn’t going to blog about this but one of the others on my journalism course suggested I should.

Earlier this week a bunch of us from CAB went to a pub in a nearby town to eat.  It was our post Christmas, Christmas social (we always have it in January).  It’s not a town or pub I know. But based on what I’d heard of the access I didn’t have alarm bells ringing

Then we got to the pub and as my colleague drove past the main entrance and into the car park I could see it had a step. I didn’t know about that step.

Across the dark car park we go. I’m hoping I’m not about to wheel into a pothole I can’t see and tip myself out – the downside of the manual is it tips so much easier than the powerchair. And we try to go along to the back entrance. But the path in the beergarden is narrower than my chair and so my wheels are sinking in the mud where it’s been so wet. I can’t wheel myself through it and nor can anyone else.

Round to the front to look at that door. It’s not happening. Two inch step and a then a tight right angle turn to go through another, narrower door that no one thinks my chair will fit through even if we could get me up the step.

I’m beginning to think I’ll be ringing my Dad to come get me. I don’t know that I’m going to get into this pub.  But then a staff member appears and she suggests getting me in through the kitchen.  It wasn’t level and I needed help to bump up and over the lip and negotiate the tight turns in this old, listed building.

At last, surprisingly, I am in the pub. I greet my colleagues and get a drink.

Then I go to wash my hands because they’re muddy from the attempts at crossing the garden. I come back out of the disabled toilet with clean hands but the knowledge that I won’t be buying the “next round” I’d said I would. Because for some reason there’s only one grab rail in there. By the sink. So I’m making my drink last and putting up with my thirst and hoping I don’t need a wee.

I did enjoy the food and it was really nice to see everyone and have a proper chance to chat. I saw several people I’d not seen for ages (possibly not since the last social in the summer in one case) and met someone new who volunteers on different days to me. It was good.

Then it came time to leave. As they were getting me out, a different staff member was helping. He made some comments, I forget what, and I said “I was told you were more accessible than this.” And he told me the problem was that I was using the wrong door. Wheelchairs always use the front door. “But that’s got a two inch step.” says I. He didn’t reply to that but as he moved out of my way and I wheeled towards the car I heard him tell one of the others that they might look into getting a ramp.

The person who organised our meal emailed me a couple of days later to say she’d sent the pub a message to thank them for our lovely evening. She copied part of the managers reply (who might have been the person who helped my out, I’m not sure) and he apologised for the difficulty in getting “the wheelchair” in and said they are going to look into what they can do to make the front door better accessible within the limits of how old the building is and it’s listed status.

That’s brilliant. I’m pleased that they saw my difficulties and say they are going to try to resolve them.  I’m even more pleased that it didn’t take me writing a letter or making a complaint afterwards to do that.  I won’t go back but it’s nice to think that maybe, just maybe, another wheelchair user who comes after me won’t have so much faff and struggle.

But I really would love for someone to explain to me just how people forget to mention (or don’t even notice) the bloody great step to go in.  Because sadly places do that all the time. And I just don’t get it.

 

I’m a professional cynic but my heart’s not in it

Ages and ages and ages ago someone got really annoyed with me because I reminded them that I have access needs. They knew it and more importantly the person doing the organising of that event knew it and as they put it I needed to trust they both because I knew both they and the other person wouldn’t forget. They even went so far as to suggest that my asking was insulting to the third party doing the organising.

Which frankly is bollocks but was just another example of this particular person thinking they understood disability and saying ridiculous stuff, much of which was well meaning but inappropriate.

The hilarious thing about that is that if the third party they were so insulted on behalf of had been part of the conversation with the reminder they wouldn’t have been insulted and would have got why I worry and always have to check. Because the third party has a disability that means they have had periods of needing a chair.

I was thinking of that long ago conversation recently when events dredged it up from where it was lost to the depths of my memory and the years past since then.

I was invited to an event. Asked the person inviting me does it have wheelchair access? They didn’t know. I located details of the venue and sent an email, started looking at train times and the like while I waited for a reply. There is access to all but the loos at the venue. If it were local ish to me I might have risked it but it would have meant a few hours on the train so I decided against.

A couple of weeks later I was invited to another event. Decided I definitely wanted to go to that and was very excited. I’ve been to places near there before and knew it should be straightforward. Had a quick look at train times because it was a CAB day – way after my CAB time but I wasn’t sure if I’d fit before in with travel time. Had a quick look at hotels because if I could find a cheap one it would be cheaper than travelling home late at night (would need a taxi from Reading probably). Then I looked at the venue website. It looked great. But I can never quite bring myself to trust on access – experience has taught me otherwise. So I looked for the contact details. I never made it that far. Right above the phone number “sorry we don’t have wheelchair access.,”

Excited to really upset in one quick movement.

And then yesterday I was booking to go to a meeting. I looked at dates for London and for Birmingham sussed out travel for both and decided which was best. Put my name down and got an email back quickly saying I had a place but they needed a phone number in case of last minute problems. So I winged one back with my mobile number and mentioned I use a chair. I didn’t expect it to be a problem because of the type of  event and the venue website screamed “new building that’s going to be accessible.”

But the email I got back said they couldn’t guarantee there was wheelchair access.  Ugh, stress. I suspected I wasn’t going to get there and I was thinking what a waste of time all the logistics I looked into were. They have since confirmed to me that there is, in fact, access. So all is good.

In all three cases it seems that the person doing the organising either didn’t look into access, possibly because they didn’t think to or assumed no one with access needs would want to, or were unaware of the accessibility (it turns out with the meeting that the organiser and the replying to emails admin person weren’t the same and one knew the other didn’t)

This is why I’m cynical about access.  This is why I’m uncomfortable allowing anyone but me to be the one to make arrangements. This is why I always have to ask and I find it hard to trust.  It’s not how I want to be but it’s how life and bitter experience have taught me I have to be.

As Blur sang “I’m a professional cynic but my heart’s not in it…”

 

I is for…

I is for Impossible

As a disabled person and particularly as one who is both life long disabled and a woman there can be a lot of barriers in my way.

Actual physical access is the big one although awareness of that and facilities are improved a lot and the amount they’ve changed just within my lifetime is huge.  That’s not to say there isn’t a long way to go because there is.  I just read an interesting blog by Anika about that.

Attitudes and awareness are in many ways a much bigger barrier.  If people refuse to understand why I can’t be carried down a flight of stairs or tell me to stop making a fuss then access can’t improve because they don’t understand.  And understanding is huge.  I recently tweeted a shop in a town I was going to visit and asked if they were accessible.  They replied “the shop is wheelchair accessible, just a step to get in.”  Which, if you know about wheelchair access you’ll know means it, in fact, isn’t accessible.

Today I’ve been trying to book a weekend away.  I’m undecided about where I want to go and after poking round and places to go and things to do I took a look at hotels.  The website of one of the chains didn’t have exact accessibility details online and their twitter person told me I had to phone the actual hotels I was interest in.  The first had accessible rooms but not ones that I can access. So then I had to phone the other hotel.  That does have rooms that meet my needs – in fact all of their accessible rooms meet my needs – but it’s a way away from the centre of town and all the places I thought I might visit.  That town is doable in a day from here so I’ll maybe do that instead.  And as for a weekend away I think my second choice of city to visit might be back in the running.

And sometimes my own attitude and experiences can be a barrier to doing things. After 30+ years as a wheelchair user it’s easy to be jaded and think “the last time I travelled to that train station things went wrong” and not go there again.  Or “I heard that chain has a terrible rep for access, I’ll give it a miss”.  I try not to but it’s easy to fall into the trap.

People will often tell me not to do stuff – that I won’t be able to.   I have a bit of a habit of proving them wrong.  I used to say people should never tell me I couldn’t do stuff because it would just make me determined to prove them wrong.

Now I am older and perhaps wiser I rarely say that.

I can and do point out to people that I can do things they think impossible for me.

“This isn’t recommended for people with mobility problems due to long distances involved” – not a problem I use a powerchair and it’s got good batteries.

“Sorry, there isn’t accessible tube on the route we’re taking, so hope you don’t mind not coming” – if I get the train to a different station I arrive in London at a place that does have accessible tube, I’ll meet you there.

“don’t go in there, there’s no room for you to turn round you’ll never get out.” – I can reverse my chair that distance and turn when I’m outside.

It can and often does take a lot of creativity, some courage and most of all bucketloads of determination but I find that despite what many people think there will always be barriers in may way there’s not much that’s truly impossible if I really, really want to do it.

A Disabled Day Out in London – A Poem

(I was talking to a friend about my day out in London from a few weeks ago using it as an example for something else that I was a bit inspired by to write. She suggested that the day itself and what I was saying would make a good poem. I might still write the something else.)

A Disabled Day Out In London

Yes we do assisted travel here at station A

(You’ll book but that won’t matter)

You’ll request a push up to the train

but we’ll walk off and ignore you

 

Yes we do assisted travel here at station B

(You’ll book but that won’t matter)

The people at station A won’t have reminded us

So we’ll not bother to check

and leave you stranded

 

Yes we’ve got a ramp into the building

(you’ll check and be reassured but that won’t matter)

Because the ramp is too steep and not safe

A passer by grabbing you is all that prevents

a nasty fall

 

Yes we’ve got lifts. Two and you’ll need to use them both

(a reassuring claim

but that won’t matter)

Because one of them doesn’t quite stop level

with the floor

and you needn’t think your wheelchair will fit

without some creative struggling

and the risk of a fall

 

Yes, we’ve got a ramp for the internal steps that come next

(their claims of “yes” begin to reassure

but that won’t matter)

But it’s a moveable one

And you’ll get half way up it

And notice it’s slipping as you move

Meaning you must

give up

or risk falling.

 

And finally, yes we’ve got a disabled loo.

(the final piece I needed

the final claim that makes it possible.

but that won’t matter)

but you can’t have a wheelchair

right by the loo

and properly shut the door

let alone lock it

and so I must choose my own adventure

my own risk

chance getting walked in on

as I did to another?

or yet again risk a fall?

 

I try to complain

(but that doesn’t matter)

The response is just

“we’ve got ramps.

we’ve got lifts

we’ve got a disabled loo.

didn’t they show you them?”

 

When it came to

wheelchair access

that place

had it all

But that didn’t matter

Because it would only

work for

the wheelchair user

who doesn’t use a wheelchair

 

Then you return

to Station B

wary

but overwhelmed

and desperate

for home

 

different staff now

and suddenly

access matters

and access works

 

The train will pull in

to Station A

the last stop

before a taxi home

access fail

means nerves

are high

 

A different staff member

waits to help you off the train

Actually helps

Restores my faith

in humanity

because suddenly

access matters

and access works.

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.

I can’t be bothered

This is not the blog post that the two people I went to London with yesterday are expecting to read.

Because that’s about so much access fail and ridiculous stuff. And it’s frustrating as hell and it had a huge impact on our day and didn’t need to happen.  But at the same time as much as those who I was with were shocked and appalled, I wasn’t.  I wasn’t surprised because I’ve been there, done that in so many places.

And as soon as I saw the photos of the venue on their website I realised that it would have been built at a time when the idea of wheelchair access wasn’t something that existed.  In fact, it’s a listed building. So I knew going in that it would probably have some form of access that had been shoehorned on as a second thought.

I’ve blogged a lot about finding places don’t have what they should or even what they said they had when I checked in advance (although on the grounds that both the organisation who had paid for me to go and the organisation running the event have reputations as being very good with disability I hadn’t looked into it closely. It wouldn’t have mattered anyway as it turns out).  I can’t be bothered to blog about it yet again today.

This also isn’t the blog that I’d like to write about yesterday.

I’d like to write about something that happened while I was waiting to get in the disabled loo the first time.  It was unexpected, made me smile and funny as hell.  And one of those things that I only got to experience because of my disability.

But I can’t write that blog because it’s all mixed up in the ramps I thought I’d fall off, lifts I couldn’t really get my chair in and disabled loos where I couldn’t properly shut and lock the door if I had my chair in there. And so the thing I’d probably have blogged about on a good day with good access gets lost and forgotten.

That’s probably the hardest thing to deal with about days like that.  Not the problems and the struggles and the “god damn it can I not even go for a wee without taking someone with me to stand guard?!” but having to deal with the people I’m with being shocked and appalled and suprised or whatever and how they deal with that.  Because it’s kinda exhausting.

Along with the fact that I have what would be a really cute story but I’ve almost forgotten about it in all the access fail it’s just a reminder that I am different and how what I consider normal and wouldn’t even blink at is shocking and disgusting and completely abnormal and a big deal to others.

I’d like to claim that it’s really depressing.  And it probably should be.  But it’s just…

meh.

EDIT: The access stuff also means that I completely forgot to mention in this post that we’d actually gone to London because we’d been shortlisted for an award.  We didn’t win (and I’d have probably remembered to mention it if we did) but I was never convinced our being nominated was right in the first place and I thought the winners were a good choice. So that’s all good

When Disabilities Collide

I recently met a disabled person I hadn’t met before. We were both at the same event. We spoke but only in the context of the group, about stuff to do with the event which had nothing to do with disability..   You know how they talk about gaydar? Well, if there’s such a thing as CP-dar this person really set mine off.  I don’t know that’s what their disability is but I’d put good money on their being a non-wheelchair using CP-er (or at least they weren’t using a chair at that point)

Today an email went round.  There’s this training workshop that sometimes happens.  The nearest place is London but this other disabled person apparently can’t get to London because of their disabilities and wants to go.  So the powers that be have discovered that if they can get a particular number of people who want to do it an extra one can be run locally. Did I want to do it?

Well, probably not.  I’ve not done this training workshop but I’ve done others and it appears this would cover a lot of the stuff I’ve done and is aimed more at beginners.  But at the point in time that email went round I didn’t know that.

What I did know was that I was gonna have to say no anyway if they moved it away from London.  Because I know the venue in London.  I’ve been there once before. Last time they paid for me to get a taxi to and from the station but I’ve also now figured out how to get almost all the way there on the tube due to going somewhere else so if I’m right about how close it is to there I could do that.

But I’m damned if I could figure out how I’d get to the small town about 15 miles away on the other side of the county.

I’m not going to do the course, now I’ve got the details it’s obvious not one I need to do.  Which is a really good thing because otherwise we’d have had two disabled people wanting to do it.

One who needed it to be moved out of London to somewhere locally to accommodate their disability and another (me) who needed it kept in London to accommodate their disability.

I think we can only call that when disabilities collide.  (Which is really making me think of the song “when love and hate collide”)