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?

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.

Just for Today

Dearest blog readers I need to tell you something very important.

You see, there’s this thing called Cerebral Palsy (some people call it CP for short). It’s a disability. I have it. So do thousands of other people all over the world, probably even millions. I don’t suffer from it. I have it. That’s important. It’s not a terrible thing. There isn’t a cure and it’s life long but it is what it is. And what it is is difficult at times but generally ok.

And what I need to tell you, my dear blog readers, is that I need you to be aware of the fact that CP exists and I have it. But just for today. You by some bizarre reason didn’t know that I’ve got CP and what that is yesterday, I’m confused but that’s ok. You wake u tomorrow and you’re like “Emma told me something important yesterday but I just can’t remember what that is…” Ok. Just so long as you’re aware of CP today. This is, apparently, very important.

Because today is World CP Awareness Day. So if you could change your Facebook profile picture, or wear green* or even stop and think about CP every few minutes this will apparently make a huge difference to the millions of people like me.

Or you know just ignore the hype and get on with living life.

Because CP isn’t just one day, it’s everyday and I’m not sure there’s any point to days like this. I don’t really know what they achieve (apart from giving me a chance to write sarcastic blog entries like this) nor am I sure there’s anything I want them to achieve with it. I wrote more about this in March this year.

Work for disability awareness (which as I’ve said before I tend to think is more relevant that awareness for individual disabilities) because you want to. Not because a bunch of disability organisations got together to declare that today is the day.

Or you know just ignore the hype and get on with living life.

Yes, I know I said that already but it’s true. I think we make more of a lasting impact by being out there and living our lives than we do by big stunts. My friend Angela often tells me that I educate without meaning to every time I write. Plus, I’d be doing that anyway so it’s low effort awareness. My sort of activism 🙂

I’m really glad we had this conversation you read my rant dearest blog readers.

Lots of love,
Emma xxxxxx

Tell A Feminist Thank You and Disability Mentors

Since this afternoon I keep seeing tweets pop up with #tellafeministthankyou (hashtag “tell a feminist thank you” for those who find those hard to read).

I got to thinking.  It would be good to have a similar thing for people who campaign on disability issues.  But what would you call it?

Feminism is generally considered to be a good thing and to have made amazing strides forward in rights for women both in this country and others.  The suffragette movement and the fact women in the UK can vote being just one example.  It’s the one that comes to mind because I just read The Children’s Book by AS Byatt and the votes for women movement plays a role in the book.

And I suspect that a lot of what has happened to improved disability rights and everything around it has a basis in the feminist movement.  Once you can get someone to change their mind on something it’s often easier to get them to begin to shift slightly on a different but related issue such as disability rights in my opinion.  The two issues are very different but they compliment each other and one can lay the groundwork for the other.  Although, obviously there are also times when to link the two issues together would be inappropriate just as there would be with any other “ism”

But going to the hashtag you could never have “tell an ableist thank you” (or disableist depending on your term of preference, mine I think is moving more towards ableism at the moment) because ableism is a bad thing and rightly so.

There are so many people who have been my disability mentors along this journey.  Not all of them have disabilities themselves but most of them do.   And one or two that most of what I took away from them was how not to be. Some I have thanked.  Many I have not and some I doubt I’ll ever get the chance too.

I considered sharing names and linking to blogs of some of the awesome people who’ve been that for me at different stages at my life.  But the fact of the matter is I could never list them all and I’d hate to miss someone off.

Most of them are people I either met through the internet or who I only know online.  I grew up knowing many others with CP and a few with other disabilities we wheeled or walked our path growing up disabled together but I’m not sure mentor is the term I’d use for those people.  Possibly because for me the path to true acceptance and being happy in my own skin didn’t come until I was 17 or so.

If you’ve played a role – any role – in mentoring me or in the fight over the years for the equal treatment and rights that I and others deserve as both a disabled person and as a women then Thank You.

That’s something I don’t think we say enough.

International Day of Persons with Disabilities

Today is the UNs annual International Day of Persons with Disabilities.  That’s a very medical model term (although I suspect it was changed because it’s “people first language”) and I’m much more of a social model girl so I shall henceforth refer to it as a day of Disabled People.

The UN statistics state that 1 billion people worldwide have a disability or approximately 15% of the population.  I don’t know how they’ve classified disability but I have to say whilst the 1 billion figure feels right to me based on previous figures I’ve heard, I was a little surprised it was so low as 15%. I realise this makes no sense!

I wanted to write something and I wasn’t sure what.  And then I got to thinking that somewhere, right about now, there are new parents with a brand new baby, maybe even in the hospital where I was born.  We’ll assume they had a baby girl and they named her Emma, like me.  She was born today.  And one day her parents will be sat down and told by the doctors “your child has Cerebral Palsy”.  Perhaps she was born prematurely and deprived of oxygen like I was. She might end up a wheelchair user or she might end up walking with crutches.  Regardless they are now carers and she is disabled.  She’s still their baby girl, their Emma, and they love her but she’s not the what they planned for when they said as all expectant parents seem to “as long as it’s healthy”

Tonight, another family will sit down to tea together.  It’ll be Dad and his young kids sharing a pizza and laughing and joking.  None of them knowing that when Dad wakes up tomorrow he won’t be the same guy, he’ll have had a stroke while he slept.  Guess what? He’s disabled now too. Amongst other things he’s lost use of his mouth and now needs tube feeding and a communication device. He’s still Dad… but he’s different.

And there’s a young woman somewhere – rushing off to work a little bit late because on this cold morning her warm bed was just too comfortable to get out of when the alarm rang.  She’s driving, maybe a little bit faster than she should but at 18 she only just passed her test and thinks she’s invincible. But the roads are icy and her car skids.  She survives but has to have an arm amputated and her life is never the same again. But she’s still her.

You might wonder what disability has to do with you or why you should care but the fact of the matter is – we are the worlds largest minority group.  And chances are one day you or someone you love will be part it too.

I’ve always thought that I was very lucky to live in the UK and that I’m accepted and I live a brilliant life.  A lot of things could be better but we weren’t doing too badly. But things have changed here in the UK and I don’t feel as accepted. This is something Kali has written about much better than I could in her post When Did We Forget?

So what do I want on this International Day of Disabled People in 2012? I want people to realise that there is no us and them. We are all in this together because there is no magic spell or shield you can use to prevent you becoming one of us – a disabled person or as we are now more commonly know – scroungers.

I can just about cope with living in the world as it is now – although I dearly miss the community we had and the world we lived in pre coalition and scroungers. But my hope is that for baby Emma, born today and newly disabled things are different.

I hope that on 3rd December 2042 when she’s my age it’s simply just another day and she marvels that disability was ever such a different big deal of a thing that it had to have it’s own day. I have absolutely no idea how we can get to that point. But I know that by everyone working together and doing what they can we can definitely do it. Because we’re disabled. But we’re also awesome when we come together as a community.

 

 

Inspiration Porn

Tonight is the yearly Children in Need appeal here in the UK. BBC One is taken over by a telethon for about seven hours. The idea is to raise money to help disadvantaged children. So you see video clips of children from other countries walking miles for water, young carers helping their mum or dad and disabled children doing things too. And it’s a given that those children will either look sad or have their story told using emotive language such as “suffers from…” Or “whilst other children are playing little Johnny must…”

Interspersed with those clips are famous people doing silly stuff, frequent updates on how much has been raised and brief mentions of members of the public doing sponsored silences. Locally a lot of schools have had PJ days to raise money. Those can sometimes be funny and a child I was a big fan of Children in Need.

Now? I hate it.

This is what’s known in disability circles as “inspiration porn”

Inspiration porn is something which is designed to highlight the differences disability brings and invoke pity. In some cases this pity is to raise money for charity, in others it’s to encourage people and sometimes it’s designed to make them think. It’s a bit like the ultimate embodiment of the phrase “there’s always someone worse off than you”. I am disabled and therefore, automatically, my life is terrible, I am an object of pity and you have it much better than I do.

The phrase that will be heard a lot on telethons is “can you donate to make a difference to a child like little Johnny” invariably after they’ve just told you how terrible his life is. The inference being that if you can’t you obviously don’t care about him.

It’s the picture doing the rounds on Facebook with the “the only disability in life is a bad attitude.” Attitude is huge. But I can’t put on my Bolshie face, wheel up to the local shop that doesn’t have wheelchair access and stare the step down until it magically turns into a ramp and lets me in. And as much as I do my damnedest not to let my CP stop me that doesn’t make me amazing and I’m sure as hell not inspirational. The idea behind that I believe is that it makes nondisabled people think “if she can do that with all she goes through why am I moaning?” And such like.

Or it’s the advert at the train station which shows a little boy in a wheelchair with the phrase “he wishes he could leave this behind too.” And the details of how to donate to one of the disability charities. Because clearly he’s trapped by his chair. The idea as with all of these is to make you pity him. Only when I saw that poster I was sat in my wheelchair. On the train as it pulled out of the station. Fail.

Disability does make me different to other people. Wearing glasses makes to me different to other disabled people. The fact I like to dye my hair, live alone and am a big NCIS fan makes me different again from other glasses wearing disabled people. It’s a fact of life and a characteristic of me as any other for anyone else in the world.

I knew, growing up, that at least one of the organisations I was involved with had received money from Children in Need (although I don’t think it was ever featured). But I never realised that I was one of those kids. One of the ones who were shown “leaving the confines of their wheelchair behind for an hour once a week whilst they ride a horse.”

I’m glad I didn’t realise. It took me a long time to become the vaguely confident outgoing person I am now. It would have taken longer if I’d grown up with the knowledge that my life meant I was an object of pity who needed charity lives a terrible life and who is held up to others as a reason why they’re lucky. Because obviously the fact I survived being deprived of oxygen at birth at a time when the medical world wasn’t as developed as it is now means I’m terribly unlucky.

More than your charity I want your support. And for me that comes from being treated with respect. From people recognising who I am and my individuality, not making assumptions and letting me be me. That’s going to make more of a difference to more of those “children in need” then all the money donated in it’s entire 30+ year history.

If you want to help people donate direct to organisations and bypass those events that thrive on making people feel bad.

See the girl, see the truth, see the life. Accept me and those like me. I’m here living me life. Like you I’ve only got one shot at it and I don’t have a choice but to do what I do. I’m here to enjoy myself, not to inspire you or be pitied. Open your eyes and say no to inspiration porn.

Speaking Out

A few days ago it came out that the little girl who went missing in Machynlleth in Wales last week, April Jones has cerebral palsy.  It kinda made me stop and pause a moment hearing that she’s got CP just like me more than anything else I’d heard about the case. The news coverage all seemed to use the term suffer “Missing Girl April Suffers from CP” screamed the headlines.

I posted to a facebook group for CPers that I belong too that I wasn’t sure whether to be impressed that she’d gone missing Monday night and it had taken until Wednesday night before mention of her disability was made in the press.  Or annoyed by the use of the term suffer.

Impressed because of the added shock value CP would bring wasn’t used immediately. And annoyed about the term suffer because it’s so negative and not appropriate.

Now the group I belong too is really cool and has some really opinionated kick ass people offering support and friendship. I love it.  I don’t think I’ve felt like I belong in an online disability group like I do here.  I also posted a similar comment about the term suffer on twitter.

And in both places there was a bit of a discussion on it. Some people felt like the term suffer wasn’t what mattered here, finding April is.    The group of CPers seemed to focus much more on the CP side and I felt like the tweeters had much more of an issue with my having an issue with Suffer. And I agree that locating April is the most important thing. Sadly however the search is now a murder enquiry and it looks like she won’t come home.

But I don’t want people to pity me. I want people to know that CP isn’t a disease.  It’s a disability, a life long condition that I live with.  And I don’t suffer from it.  I have it.  It’s a really important distinction. One that takes away from the automatic pity “this is something negative” response and shows that it’s OK to live and accept and simply be disabled and content.

Of course for the majority of the people reading that story about a missing five year old who suffers from cerebral palsy it’s just another fact in an already very tragic news story. And those of us who have CP or other disabilities might see it differently whilst still seeing the tragedy of April’s case.  That doesn’t mean I’m wrong to speak out about something seemingly trivial like language though.

I take my time before I speak out and sometimes I pick my moments, decide that now is not the time or this person will never understand or something similar.  The trouble is there is always a reason not to say “I’d prefer you not to use this term to describe disability because XYZ” and if I always went with that reason people would never know what I think.  I’d never manage to reach out and change anyones opinion.

I’ll always speak out whenever I feel I should and that I can.  That might mean that sometimes I say things that others don’t understand or that makes them uncomfortable. And occasionally I might come to regret it and realise that then wasn’t the time.

But at the same time it might be the thing that helps someone feel better about themselves as a disabled person. That makes me feel less like a worrthless freak hated by society (I’ve had days when that’s how I’ve felt) Or it might change attitudes.

I like my disability, I’m proud of it and I love my life.  I have friends and family who support me and I have brilliant opportunities, pretty much everything I need or want is in my reach if I want to go out and get it and I’m generally in a good place and enjoying life.

I want that for other people with disabilities too. I want disability to be seen as a good thing.  And OK so others think my brief comment is inappropriate.  I can’t do anything to help April. But I can speak out and help make sure that other little girls and boys with CP grow up to be accepted and not face negative stereotypes.

That’s so important I can’t describe it. And if I can do something about it, I always will.

Happy Tears

I was asked to speak at an equality event today. About the access group (AFA) I’m chair of and a bit about my own story as a disabled person.

I think it well. I didn’t write a speech, I had a few ideas but wanted to just talk off the cuff. It helped that this is I think the third time I’ve explained to people what and why AFA is (although previously I’ve only done so in informal settings). The very first idea I’d thought of when thinking it over I forgot to use.

I talked about how I don’t suffer from CP because it’s all I’ve ever known. How just because me and another hypothetical person both use chairs doesn’t meant we have the same needs. And I talked about lots of other things. I can’t remember exactly, I wish I could.

One of the things I mentioned is how failing to provide access and inclusion doesn’t just mean I miss out. I shared the story of the Major Access Fail. Through that course I’ve made some new friends. But I’ve spent so much time fighting and arguing and being upset about that I feel like those new friends haven’t met me. They’ve met upset, depressed, fighter Em whose been made to feel worthless. They’ve not had the opportunity to meet happy, having a laugh Em who gets on with things, is confident, opinionated and loves life. Me.

After I finished speaking I went to the back of the room and the organiser leaned down and whispered to me “that was brilliant” so hopefully it worked. Next there were a few more speakers then time to mingle. During the mingling time I spoke to a few people and asked them if they thought it went ok. I was a little unsure I’d hit the brief. A few interesting comments, I think I might have got some people thinking.

Someone I vaguely know came over to chat. I think it was the third or forth time we’ve met. We did the usual “hi how are you?” bit and then telling me she’d liked my speech she burst into tears.

I froze and thought “oh shit”.

What I said was “I didn’t mean to make you cry.” hopefully she missed the panicked note in my voice

Through tears she shared why. She has a young granddaughter who has CP. Ever since the diagnosis she’s been upset about all the things her granddaughter wouldn’t do. Hearing me talk about my life gave her hope that things would be ok.

She told me the tears were happy tears, happy tears.

I gave her a hug and I must admit I had to fight off happy tears of my own.

I’m not sure what I said that helped, I never expected anything like that to happen. I’m not even really sure I did help, sharing struggles like that.

But…

If I can make one person think differently about how they approach disabled people I’ve succeeded in my talk.

Reaching someone else and helping the family of a toddler have hope that a CP diagnosis isn’t the end of the world is huge. I don’t have the words to explain what that means to me.

It doesn’t negate the bad experiences I’ve had. They still hurt, they still shouldn’t have happened but will again. And in the case of major access fail its still outrageous. But being able to use that in a positive way takes away most of the sting of the memory.

It’s not OK.

But it sure as hell helps.

♥ Emma

Quote

Quitting is not giving up, it can be choosing to focus your attention on something more important. Quitting is not losing confidence, it’s realizing that there are more valuable ways you can spend your time. Quitting is not making excuses; it’s learning to be more productive, efficient and effective instead. Quitting is letting go of things (or people) that are sucking the life out of you so you can do more things that will bring you strength.”
~ Osayi Osar-Emokpae.

♥ Emma