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.

Hate isn’t Funny, part two

To recap: On Wednesday I went to see Omid Djalili do a warm up gig.  I really wish I hadn’t because not only did he used the R word in one of his jokes he also did another which was the most horrendously ableist joke I’ve ever heard.  On Friday I posted a blog about that – Hate Isn’t Funny. This is the last I’m going to say on the matter.

That blog post got a lot of attention on twitter and facebook (and in comments here).  It’s also had the most hits of any of my posts on this blog in a very long time (I’ve not seen the stats but in terms of shares etc I think actually my recent post over on Bea Magazine has had more of an impact but not by much). And I’m glad because it means that people are hearing the point about disability and hate and how it isn’t funny.

It also received one negative tweet but that was just #nosenseofhumour (hashtag no sense of humour) and frankly if people can’t put more substance into their disagreeing with me than a hashtag then they aren’t worth bothering with, I ignored it and made judicious use of the “block” button.

Following a suggestion from a friend of mine and encouragement from my mum I also tweeted Omid Djalili the link to my blog. And to give him his due he did reply and there was some discussion between us.

His response isn’t what I’d like. But that’s mostly because I’d have liked an apology and that was never going to happen.  Frankly some of it was victim blaming. He claims he said, clearly, both nights “I’m not saying all disabled people are….” before making his horrific joke about a disability stereotype. I wasn’t in there both nights but neither my mum or I remember it happening on the night we went. I tweeted back to him that I felt like he was blaming me for being upset by it and he responded “not at all. Entitled to your feelings 100%”

And “obviously” the thing about not choosing venues with wheelchair access was a joke.  That might have been a bit more obvious if there wasn’t precendent of other comedians cancelling gigs at venues that had wheelchair users in obvious places.

On the whole I’d like to think my blog and our conversation on twitter has made several people think about what is and isn’t appropriate when it comes to disability in comedy. And more importantly I’d like to think that it’s made Omid Djalili think and he might reconsider using the jokes.  I really, really doubt I’ve achieved that because I’m too cynical and hardened by too many broken promises about access and equality for my disability. I respect his taking the time to respond but I don’t think he really respects disabled people any more than it seemed he did at his gig on Wednesay night.

Maybe someday someone else will tell me they went to one of his gigs and he didn’t use disability hate speech or ableist jokes.  But it sure as hell won’t be a gig I’m at because I’m not going to waste my money going to see him again.

Hate isn’t Funny

On Saturday Mum and I went to a Jack Whitehall gig in Oxford.  He definitely wasn’t the best comedian I’ve ever seen but most of the time he was pretty funny.  Once or twice he pretended to have forgotten his script and at least once he really did forget his script which was a bit frustrating.

Unfortunately however he also made several jokes that I thought were right on the line of what is and isn’t acceptable when it comes to disability.  I can take that.  I think I’m a lot more flexible than some people are on the sort of comments I find acceptable and I thought a couple of times “ooooh that’s a bit ableist but it’s just about ok.”

And then he came back from the interval used the R Word (r*t*rd) once and did one joke that went way over the line of ableism. Which is very definitely unacceptable.

So I wasn’t overly impressed and I very definitely stuck him in my “comedians I don’t want to see again” box.

And then Wednesday night Omid Djalili was performing in our very small theatre here as a warm up gig.  He was also here Thursday but Mum and I went on Wednesday.

I’m watching him and I’m sort of enjoying it but I’m also thinking that if you took away Jack Whitehall’s ableism he was probably a bit funnier.  They were very very different shows however and I don’t think it’s really comparable.

I did think Omid Djalili was probably pushing the boundaries of acceptable race jokes but I wasn’t really sure about that because of the whole thing where specific groups of people joking about themselves make things acceptable that might not otherwise be.  I’ve fallen foul a lot of that and joking about my disability so it’s not appropriate for me to comment  on that issue.

Then he was talking about an encounter he’d had with someone in the car park outside.  He used the R word to describe them and made several very very ableist comments.

And then it was the interval and the show continued.

Right at the end he made the most inappropriate disability related joke I’ve ever heard (which I’m not going to share).  It wasn’t designed to be funny.  It was designed to make us laugh at a stereotype of disability.  And it was horrific.

He made it pretty clear he thought there weren’t any wheelchair users in the room (I was sat at the back) and that was why he made the joke then went on to joke about how he doesn’t chose venues that have wheelchair access.

I was so angry I was practically shaking.  I gathered up my stuff to leave but didn’t actually leave because by the time I had it together he was finishing his act.

I’ve been going to live comedy for years – I went to the comedy club at my uni nearly every week for three of the four years I was there.  I must have seen hundreds of different comedians.

Some joke about disability and get it right.  Some don’t joke about disability, maybe they’d prefer we didn’t exist or maybe it’s just a case of they don’t know how to appropach it.  Some comedians joke about disability and it falls flat because it’s just a shit joke (one guy at the comedy club at uni made a massive deal about coming to me before the show started and letting me know that he had a joke about disability and it was just one joke and he hoped I would be ok with that and not offended.  It wasn’t in the least offensive.  Unfortunately however it also wasn’t funny).

And sadly some comedians prefer to get cheap laughs by throwing around hate speech like the R word and similar and mocking disabled people.

And this was the first time a comedian made me that angry.   Ever.  I made a complaint to the venue.

I’m pretty upset that it came to that.  But a small part of me is surprised that in over 12 years of semi regular live comedy this is the first time it’s been necessary.  I doubt it’ll be the last.

I hope, one day, comedians will realise that ableism isn’t big and it isn’t funny.  In the mean time I’m just glad that the next show I’m going to is a musical.  Because that should be a lot safer.

(edit: I have posted a follow up blog here)

You Know You’re a Bookworm When…

Mum and I were wandering round Waterstones on Saturday.  We were wandering together but separately and before she went off to look at stuff I said to her not to buy anything without checking with me. That’s because lately we both seem to have bought copies of several books and that’s a bit of a waste.

So after a few minutes she hunted me down and showed me what she thought she’d get.  And I’d heard of it and wanted to read it but hadn’t got it.  It was on buy one get one half price so she was hunting for something else to go with it.  And she’d offered to buy me a book or two if they were on buy one get one half price.

She’s looking at books and I’m like that “I’ve got that on my kindle, it’s pretty good… Yeah don’t buy that I’ve got a paper copy…  You can’t buy that I’ve got that. Not read it yet but…” and so on. Probably six or seven books I did that with.

Then she’s settled on the book she really wants and a second she wants to give a go because it’s buy one half price.  And I’ve chosen a book but it’s buy one get one half price too so I’m having more of a look to see if there’s something else I’d like as well.

I reach for this book and I’m reading the back and I’m sure this is definitely the second book I want.  Then mum sees what it is and goes

“you can’t buy that, I’ve got that.”

In the end we decided to just get the book I really wanted and the book she really wanted.

Is This Love? by Sue Moorcroft

It’s Sunday and I usually post “Self Care Sunday” as a way of recording what I’ve been doing to take care of myself and most importantly treating myself each week.  I started doing that because I was noticing I suck at that.  I didn’t post it last Sunday because my blog went down.  And I’m not posting it today.  Or at least not in it’s usually way.

Self Care Sunday today is a book review.  Because after a ridiculously busy few days I needed a lazy day today.  And it’s been the laziest of lazies.

I slept late.  I went out to brunch with my brother and sister in law. We all had a full English and then we decamped to the coffee shop opposite the one we were in for a quieter drink which we thought we’d get quicker than where we were. I prefer that one for drinks but I prefer the one we were in for breakfast so it was the best of both worlds. I read a massive chunk of a book. I took a nap. and then I read the rest of that book.  Which I’m now reviewing.

A few weeks ago I was chatting to an author via email when they mentioned a lot of my blog was familiar to them because they have a disabled relative (they specified they don’t talk about their family online so I’m not naming them to respect that). I mentioned my endless quest to find books with disabled characters done right. And they suggested Is This Love? by Sue Moorcroft.  They also put me in touch with Choc Lit who published Is This Love? and were nice enough to send me a review copy.

How many ways can one woman love?

When Tamara Rix’s sister Lyddie is involved in a hit-and-run accident that leaves her in need of constant care, Tamara resolves to remain in the village she grew up in. Tamara would do anything for her sister, even sacrifice a long-term relationship.

But when Lyddie’s teenage sweetheart Jed Cassius returns to Middledip, he brings news that shakes the Rix family to their core. Jed’s life is shrouded in mystery, particularly his job, but despite his strange background, Tamara can’t help being intrigued by him.

Can Tamara find a balance between her love for Lyddie and growing feelings for Jed, or will she discover that some kinds of love just don’t mix?

From reading the blurb on the back I’d been a bit concerned that I would find the way Lyddie’s disability was handled to be negative.  For the first chapter or two that seemed like it was definitely going to be the case.  But actually once I got into the book and things started happening that proved to be anything but the case.

Lyddie is disabled. It plays a relatively large role in the plot. But it’s not the be all and end all.  And it avoids all the “look at the poor little crippled girl” crap you’d expect.  Obviously there is some of that but that’s just life when you’re a crip, trust me.  I think a huge part of that may well be because we meet Tamara and her family at least ten years after the accident that leaves Lyddie with learning disabilities (I’m not sure how long because I’m not sure how old Tamara is in the book but she was 10 or 11 when the accident happened and has to be well into her twenties in the book at least)

A herd of Alpacas appear in the book.  I’m pretty sure that being a bit of an animal phobe if I actually got too close to some they’d freak me out but it did suceed in making me think it’d be nice to go and visit some.  I also came away from the book thinking that maybe I should look into yoga (Tamara is a yoga instructor). I think both are good examples of how much this book drew me in and kept me involved.

Along with the fact that I read this 300+ page book in pretty much two long sittings (the second was interrupted briefly to start some dinner) in one day it should give a clue as to how much I enjoyed it. In fact I thought I’d timed my dinner being ready so I’d have time to finish reading it before I needed to sort my food out properly.  I didn’t.  I had 17 pages left to read when the timer went off.  and for about 30 seconds I considered letting it burn because I really didn’t want to put it down, I needed to know how it ended!  I did put it down however.

This was the first Choc Lit book I read.  It was also the first of Sue Moorcroft’s books I’ve read.  It’s more than likely not going to be the last of either of those.  It was perfect for my lazy Sunday and I really enjoyed it.

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

Access Ridiculousness

A piece of voluntary work I did (an event I helped organise) for my housing provider has been shortlisted for a TPAS (Tenant Participation Advisory Service) award in the Southern region.  I believe if we win we get shortlisted for the national award, I’m not sure. And anyway that has no bearing on what I want to write about.

So tomorrow is the awards ceremony for the South and as I’m the chair of the group that did the work I’m off to London to represent them along with two members of staff from my landlord.

The plan was train from here to Paddington and then taxi. Only with the floods they got a bit worried we wouldn’t manage it.  So I got a call mid morning from one of the people I’m going with saying they’d had a rethink and we’d be getting the train from Haddenham and Thame station over to Marylebone in London instead.  They’d pay to get a taxi to take me over to Thame for the train.  Only they’d tried the usual accessible taxi provider and they didn’t have an accessible one available (they only have two). As I’d said I was taking my manual would a regular taxi be ok?

I said I wasn’t keen because that would mean I’d have to transfer and talk the taxi driver through collapsing my chair (which is fine if I get one who will listen rather than just go “yeah I know how to collapse a chair” before discover that actually mine is a bit more involved than the standard grab the seat in the middle and pull it up design). Given that my transfers aren’t great and how wet the ground is it’s ringing a safety bell with me.

So she went off to ring round some other companies. Getting back to me she said she’d rung six companies including the one they and I usually use. Which was the only one who had accessible taxis. And they aren’t available.

We’ve managed to come to a compromise where they’ll pay my Dad mileage to drive me across.  I’ll still have to transfer but it’ll be safer because it’s someone who knows how to do my chair and how to help me transfer if I need it. And luckily coming back when I’ll be tired they have managed to book an accessible taxi making it easier for me and my Dad.

I’m pleased I still get to go but bang goes my independence.  And that’s just ridiculous.

And in other the floods are causing access ridiculously news:

Mum and I are supposed to go to a show in Oxford on Saturday afternoon. I spent ages on the phone to assisted travel with the end result being they couldn’t book me assistance because they don’t know which trains will be running, if it’ll be rail replacement and what times. Maybe I could take a different route to Oxford using a different provider?

I know they’ve been reccommending that if you do have to go to Oxford that from here when the trains aren’t running direct going to Paddington grabbing the tube to Marylebone and then coming back this way to Oxford. No accessible tube at Paddington – his suggestion to me was I could get a train via Waterloo.

At which point I went “it takes two hours to get to Waterloo from here” (20 minutes ish to Oxford)

And the assisted travel guy went “that’ll be a no then?”

Laughing I told him it was definitely a no and that I’d have a rethink.

I suspect my poor Dad is getting roped in for that too.

(and actually the two most stupid access fail bits about going to Oxford via Waterloo is that 1) part of the train line to Waterloo is flooded out as was pointed out to me after that conversation and 2) being curious I stuck Waterloo to Oxford into The Trainline website. There are no trains that way.There’s no such route. I’d have to get the tube from Waterloo to Paddington which we already know I can’t do, a train to Reading and then change to an Oxford train – to GO to Waterloo from here I’d have to change in Reading.)

Random Bullet Points of Life

Random Bullet Points of Life: for those little things which are worth recording and remembering but which probably aren’t worth a blog to themselves.

I’m surprised to realise this is the first of these posts I’ve done this year.  I’ve never worked out how often I do them because there is no rhyme or reason but I’d sort of assumed it was more often than it’s been.

I had my hair cut this morning.  The hairdresser found a whack of toothpaste in my hair.

There was no Self Care Sunday post last Sunday because my blog went down. I went to bed and left it and magically when I got a chance to get online Monday lunchtime it was working again.

My Dad showed me a picture of my Gran, her two sisters and brother and her parents this evening.  With the exception of my Gran I never met any of them.  I’d not seen pictures of all of them either. It might have been taken at my great Grandparents Golden Wedding, he isn’t sure.  It’s a newspaper pic and I’m tempted to investigate it.

I’ve been in a really bad mood all day today. Mostly due to having to deal with other people.

I really really need to write a blog post about disability time.

For at least the last decade I’ve hated February because of the memories it brings.  It’s been a lot better this year.  I was surprised to realise this morning that the anniversary of one of the reasons I don’t like February was yesterday and I’d completely forgotten it.

Time for TV and knitting.