So Take Me As I Am

(title is a lyric from the Meredith Brooks song Bitch)

A couple of weeks ago I was asked how I’d enjoyed a show I went to by a member of staff there who I know. I had enjoyed it but there had been one thing that had happened – which was tangentally access related – that had really irritated me.  It was totally inconsequential and unlikely to be repeated but it had had an impact on my enjoyment and they asked so… I said “If I could just make one slightly bitchy point….”

More recently than that I discovered that the actions of someone else have left me with a huge mess to sort out. I feel more than a little screwed over and beyond frustrated as I did everything I was supposed to do but the person who was supposed to do the next part didn’t and because they didn’t do it at the correct time they now can’t.  And I’m the one who will lose out if it’s not done so I need to do it.  Their failure makes me look bad.

I was ranting to a good friend about that and I said “I know that this is really bitchy but I hope X happens because of this”

She stopped me and said “that’s not bitchy at all.” and made some other comments about thinking I’m acting like a bitch when I’m not.

I say stuff like that all the time when I complain or raise issues.  Phrases like “I don’t mean to be a bitch but…” cross my lips all too frequently.  And really they shouldn’t.

Complaining or raising issues in a constructive or fair way is nothing to be ashamed of. It’s only right and I’m sure that if able-bodied people had to deal with half the crap I have to they wouldn’t be half as calm and dismissive of it as I can be.  Recently a few things have happened which have made me realise just how abnormal my version or normal really is.

A third issue – one of disabled toilet accessibility – reared it’s ugly head. I really thought all the able-bodied people around me were blowing it out of proportion.  It was just one of those things. It happens and it’s irritating as hell and it really shouldn’t but what can you do?!  There were a couple of ways I could work around it and I’d almost never go there again anyway as I was unlikely to have a reason to.  I knew I should complain about the issue and have something done but it happens a lot of places and I was in the middle of dealing with the second incident I mentioned above and just didn’t have it in me to do anything about it.

When one of the people running the event (not the venue) asked me about it I did tell her about it. I told her it both was and wasn’t an issue and had to stop myself talking it down. I don’t think I did a good job of that. And one of the things I told her about was how I worry that people will think I’m alway moaning or never happy.  That I’ve heard those phrases along with “ungrateful” and “argumentative” many times and “you have to understand we’re doing our best” and “we don’t really get many wheelchair users” are among the stock excuses.  It grinds you down.  I wonder, sometimes, if part of the way I so often almost apologise for my complaints or put myself down by phrase it as “being a bitch but” is because subconsciously I think that’s the only way I’ll be taken seriously.  I think the person I was talking to go it and she reassured me they don’t think that about me.

Only.

Later in the session another member of staff wanted to ask me about it. Fine. They wanted to know – was there actually a problem or was the problem that I have a new wheelchair and I’m not used to it yet?  I took her and showed her how it wasn’t big enough for my chair and she got it. But talk about proving my point!

I wish that was my only example of that sort of thing from recently.

It’s not – last Sunday a well known pizza chain refused to serve me because they had a booking for a short time later that they’d chosen to book all of their (small) downstairs for and they had no lift. They had no desire to come up with a solution (I could see from how they had it laid out that a small rejig could have fitted a table for me and my friend in too) and didn’t even apologise. It was clear that they considered I had the problem not them.  And a request I made early this week to another organisation for an explanation why something had happened resulted in my receiving an email Friday that didn’t explain it and basically suggested I should put up and shut up. Again, I was the one with the problem not them.

My friend above who made the comments about thinking I’m being a bitch when I’m not is right, I should stop doing that.  But it’s a bloody hard habit to break when society is desperate not to take me as I am but to blame me for it instead.

Hate isn’t Funny Part Three

It’s not really appropriate to call this post Hate Isn’t Funny part three because I don’t think it was really about hate just about clueless people not thinking things through properly.  But the two posts I wrote on the same subject in February were about hate and I called them Hate isn’t Funny so it feels right to use that title for this and continue the series even if it probably isn’t the best title for this particular anecdote. /end nonsensical ramble about blog titles.

Back in February I went to see Omid Djalili and his show was quite ableist and frankly in a couple of places full of hate.  I wrote about that in Hate isn’t Funny and then had some discussion with him via twitter which I wrote about in Hate isn’t Funny part two. That saga didn’t have the ending I wanted it to have but it had the best ending it was probably possible for it to have if that makes sense.

I’ve been to a couple of musicals since then and one comedy show which was funny and generally not noteworthy at all in terms of disability.

On Sunday my friend Angela and I went to see Showstopper – the improvised musical.  Generally I liked it.  For me personally it could have been better simply because they asked the audience to list several musicals which would influence the show.  The ones chosen by the audience were all older ones – none of which I’d seen and only one or two I’d heard of.  So several of the references went over my head which was a shame.  Angela said to me afterwards that one of the musicals she thought the cast didn’t know either. But the singing was good and I liked the improvised plot they came up with and how it ended up.

Every so often they would stop and ask how they should show they’d been influenced by  a particular musical and for one of the musicals (Tommy) someone shouted out a character should be blind.  So for the rest of the show one of the characters was pretending to be blind and frankly overkilling it and coming across and pretty damn ableist.  Amongst other things frequently nearly walking into the audience or props or whatever and having to be grabbed.  For about the first couple of minutes it was OK and then it got to be inappropriate and ridiculous.

Then it was the interval and they asked that people tweet them with suggestions of how the show should continue.  I tweeted:

 

This is somewhat made worse by the fact that a lady I didn’t know followed me and Angela into the lift to go down to the bar and heard me comment about the inappropriateness of the blind bit. She commented that she has a visual impairment and felt like she was being mocked. It’s not my disability so I didn’t feel I was being mocked personally but I thought it was a good description for what it seemed they were doing. We talked to her for a bit and did general interval stuff.

And then we went back in the show and they read various tweets out and continued on and it was mostly good but they really needed to kill the cripping up going on it the blind bit and kill it dead.

As we left and wandered out Angela’s route to her car and my route to my flat both taking us the same way for a couple of minutes I shared with her that I should probably blog about the incident and do something about it (more of a complaint) but I really couldn’t be bothered to. Because it felt like once again something I could fight and wouldn’t get anywhere and I’d waste energy on something unnecessary. Better to just decide that I didn’t want to see them again if they were going to be ableist was my thinking.

Then Monday afternoon I went on twitter and found this tweet in my mentions:

I tweeted them back to say thank you and I appreciated it. I included my email and a day or two later (I forget which day) I got an email from one of their team admitting that when they looked back at the show could see they got it wrong. They’re going to work on it in rehearsal I understand. I thanked them and made various comments including that it would have helped to just stopped the whole blind bit after a few minutes if they couldn’t include it in a more appropriate way.

This was never as bad as the situation I blogged about with Omid Djalili, it was always about someone working in a high pressure situation and getting it wrong and hurting people. And I’m more than pleasantly surprised by the outcome. I wouldn’t go and see The Showstoppers again anytime soon but I’ve taken them off my list of inappropriate shows and my list of shows I don’t want to see again – if they were back here in a year or two I might well go back.

There have been many times I’ve flagged up ableism in various circumstances and not got a good response or been fobbed off by token gestures after long complaints and huge effort. I’m really glad to see one small thing – one tweet – have a positive outcome. And even more glad to hear someone admit that yeah actually they did get it wrong.

But it also pisses me off.

Because why can’t more people do that?

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)

Making a Difference

I was rereading some old blog entries earlier. I was planning to write something (not this post) and I thought maybe I’d written about it last year. I didn’t find anything but what I did come across was this post. I thought it was kind of apt given a piece of news I received today.

After three and a half months I finally received my new wheelchair cushion. It’s strange. It’s good and it’s comfy. But it almost feels off. This is set up differently to my old one and I’m not sure if that’s why (I have the stuff to change the set up to my old one if necessary), if its because it needs to learn how I sit or if it’s just because I spent the last two months with makeshift temporary cushions.

In the box with the cushion was a 20 page instruction booklet in 8 different languages. And an envelope with my name on it marked “private and confidential”

It was a letter. One with information about my cushion.

And then acknowledging the complaint I made to PALS about my five hour round trip to wheelchair services when they didn’t have my cushion in yet. They’re sorry but hope I did find some use in the appt (uh… Not so much).

Finally it said they’ve had a meeting with their administration team and put a system in place. One that will make sure what happened to me won’t happen again. I’m pleased. In fact I’m really pleased. If the system works and I truly have made a difference for other patients that’s huge.

But as I wrote in the entry I linked above for once I’d like not to be the one who is first and discovers a problem or the one who has it last and finds the solution. I’d like to be the one who came next.

Still, there’s always next time. Or the time after that. Failing that there’s also the time after that. Because god only knows the disability related fuck ups aren’t going to stop happening.

Maybe just once I’ll be the lucky one.

Someday.

>When Persistence Pays Off

>This is a bit of a follow on to my Advocacy Tips post and is cross posted to Disability Voices

One of the tips I gave in that post was to be persistent.  The example I gave was one of my local supermarkets.  My chair would only go through the wide aisle checkout and it was often closed when I visited.  The staff would open it when I asked but they had a bad attitude towards doing so and made me uncomfortable.  As a result I didn’t go there often and had actually decided I wouldn’t shop there again.

I had personally made something like six complaints to them, mostly verbally but I’d also written to head office at least twice.  My sister had also been so infuriated the last time I had problems there that they got letters of complaint from both of us about that.  And none of the responses I got were of any use.  A lot of them actually seemed like they were designed to “shut me up”.

Yesterday, my sister sent me a text saying that they’d redone all the checkouts in there and they were all wide aisle ones now.  My Dad took me up there for some shopping this evening.  And I could have got my chair through any of the checkouts.  I was tempted to try that but I didn’t.  It was a really great sight.  And once again, I have the same thing everyone else does in this town – a choice of where to shop (I won’t go there all the time because it’s further away but I will be able to go there again!).

I’d love to think that they’ve done this just because of my complaints but I’m not naive enough to do so – and I know I’m not the only person whose had those problems.  But it’s a definite example of why complaining, campaigning and advocacy are so important.  And what happens when your persistent – because it really can pay off.

>I’ve been being a complaining crip again

>I just typed a really long ranty I’ve had a bad day blog entry.  But then I deleted it because what is the point.


Lets just say that I’ve made three complaints this year.  Two of which were about access or DDA requirements not being met.  One was a case of shocking customer service.  Two of the complaints I’ve taken to higher ups (one of which had the higher up telling me “you just need to be patient” to which I said that I’d been patient and wasn’t doing it any more.  The second had the higher up apologising, agreeing it wasn’t good enough and promising to investigate.)

And two of those three complaint were made when?  Today.

Yeah, is it any wonder that I’m in a grouchy bad mood right now?


UPDATE: Just had a response to one of my complaints from earlier.  They were really responsive to my comments.  I’m really pleased.

>Cinema Fail

>A friend and I attempted to go and see Disney’s A Christmas Carol this afternoon. I say attempted because it turned out to be the 3d version.

She has unnamed neurological issues and didn’t even make it through the titles before she had to leave because it was doing a number on her vision. I forced myself to try to watch it but gave up eventually and left because I felt incredibly sick. I still feel kind of rough now and I know that my friend had to go to bed because she felt bad.
I let the matter go when I left the cinema (although their customer service had already proven to be bad) and am debating if I’m going to let it go or write a letter. But my friend spoke to a staff member and asked for a refund (which was refused) – she had said in passing when we went in that she had a neuro issue and then when she complained was told that a lot of people with neuro issues have problems with the 3d films.
And googling provided me with a page that said people with a lazy eye (which I have as well as my CP) and other visual problems can have issues with them.
ARGH!
If a company knows that people with neuro issues may have an issue with their 3d films why haven’t they got signs up listing that?!?! My mum said that maybe they think you’ll know that already. But 1) We had wondered about my friend (but not for me although I’m thinking it’s probably not the CP/neuro side of things which made me nauseaous it just gave me nausea as my mum has a similar issue with 3d films she says and she’s Neurotypical) but didn’t know or have any indication of known links and 2) surely in a day and age where a packet of microwavable pasta sauce has to have a warning that it may be hot when microwaved, the cinema must be required to have a sign – a sort of “informed consent” thing?
Also why do they only have 3d showings and 1 or 2 2d ones?! The listings outside the cinema made no mention of it being a 3d one although I see on the website the 3d showings and 2d showings are listed separately.
Seriously not impressed.

>No More

>I’ve had enough.

Whilst my parents are in New Zealand I’m having extra support.  And it’s driving me crazy.  Crazy I tell you.

Almost all of my carers have been late – and only one of them bothered to let me know.  On Monday the carer was 45 minutes late!  She commented that I didn’t look happy.  I told her that I was pissed off and had better things to do than waiting around for her to show up and in future to make sure I was told.  She told me that she didn’t feel well and all about her stress and family problems.

I’ve heard repeatedly how much they hate their jobs.

I ate half of my dinner one day and discovered I’d been given southern fried chicken that was raw in the middle (how I didn’t get food poisoning I don’t know).

And one saw fit to tell me that she went to school with someone with CP and she thought it was “really very sad.”

It’s always kind of been the thing that you don’t complain about these things – my mum frequently tells me she thinks the agency are good over all and it could be worse so leave it.  And when I do speak to the office staff about things the usual response is “that’s not like so and so” or “everyone else really gets on with X” so I gave up on them.

I was thinking about it earlier this week.  If I was at CAB and I told a client that I felt their problem was really sad or that I hated my job or went “you think you’ve got problems… try this on for size” all hell would break loose – and rightly so.

So why is it “acceptable” for carers?

Well, not any more it’s not.

I just sent an e-mail to the director of the care agency telling her I’ve been having issues (listed some of them briefly) and asking her to call me so we can discuss the matter.  I’d have called her myself but I didn’t want to go through the useless office staff.  And also, this way it’s on their bill and judging by how much they charge they can afford it better than I can.