Heavenly Delights

Ooh dear. The last few posts have been fun to write, and very cathartic, but I wonder if I’m getting too down on the world. Really, it’s not that bad. I was led to realise this last night, when I settled down to watch LoveFilm’s latest offering, Nina’s Heavenly Delights. I recently bought myself a post-xmas present, from me, to me, an iPad2. This will become relevant to the story. I put the DVD in my laptop. I made myself comfortable – Penguin biscuits; check. Cushions; check. Refreshing drink; check. The menu screen came up. Play Movie, Scenes, and Play Trailer. No setup or audio options. No hidden button (that I could find anyway) saying “for subtitles click HERE”. Sighing and wishing that LoveFilm made it more clear on their listings whether a DVD is subtitled or not, and plotting a new email asking about such, I took out the DVD, put it back in its envelope and got ready to seal it, ready to send it back the next day. Wait a minute… hold the phone.

Didn’t I download an app a few days ago…? Quick, have a look… yes! Yes! Yes!

Subtitles! That’s the name of the app, Subtitles, and it has access to oodles of files of subtitles for oodles of films. Simply search the title of the film and the app will find subtitles for it. Not only that, once you’ve downloaded the subtitles, the iPad will display the subtitles in sync with the film (just make sure you start them at the right moment). Literally, portable subtitles. This is fantastic. Who came up with this? I need to know so I can nominate them for a medal. But the test – would the app be able to find subtitles for a film so apparently low-budget that they couldn’t even be arsed to put subtitles on the DVD, despite it being made fairly recently in 2006?

Yes it could! So the DVD got a reprieve, was put back in the laptop, and I was able to enjoy a film that didn’t come with subtitles for the first time in… well, ever. Ever. And I checked, and it seems that it also has subtitles for Sanctuary, a DVD I bought many moons ago only to be bitterly disappointed when I discovered it wasn’t subtitled. I’m so happy about this I’m actually giddy.

True, it wasn’t perfect, the subtitles weren’t totally in sync so occasionally I had to tap the button to skip on a bit, or rein them back. It meant I had to concentrate a bit more on keeping up with the film, but that’s not the point. The point is that I was keeping up with it, a heavenly delight indeed! And enjoying it, despite a tendency to fade to black just as things were getting interesting. What a marvellous app, just needs a little ironing out and it’ll be perfect. Portable subtitles. Marvellous.

And this led me to consider; the 21st century in the UK isn’t so bad for the deaf after all. True, we still have to put up with a certain amount of ignorance; if you doubt me just read some of my previous blogs. But look what we have now. Smartphones. I couldn’t live without my BlackBerry now. Emails, text messages, Whatsapp, Facetime, Skype, LinkedIn, Facebook, Twitter, there’s so many alternatives to the humble telephone now that I wonder why most corporations still haven’t caught up. My mother is also deaf, and tells me that attitudes have really improved since her time; some of her stories are worthy of a blog post to themselves. Subtitles on a lot of TV content, even if it’s going backwards at the moment with the current fashion for ‘live’ subtitles – what utter crap. Why live subtitle something that’s not being broadcast live? It just annoys. I digress. Subtitled cinema, and now for those films that aren’t subtitled, portable subtitles. Did I mention the portable subtitles? Now we need a version of that for plays and theatre, oh wait, we do, StageText. Big events like Sencity and Clin d’Oeil. iPads with all their wonderful apps and delights. There’s so much going for deaf people right now that we’ve got to capitalise on it and try and make this world even better.

More subtitled cinema! More captioned and interpreted plays! Banks that routinely offer text message services to deaf customers! Legal requirements for DVDs to be accessible! Sign language lessons for children! More interpreters! Dream big!

We’ve already got smartphones, emails, social websites and portable subtitles. How can we improve things tomorrow? If you’re like Charlie Swinbourne, you’ll set up a new website for news, info and opinions about and for the deaf community, and call it – what else? – limpingchicken.com. Naturally. 🙂

Updated shit hearing people say…

Recently, I wrote a post called “shit hearing people say” and it seems that spoke to a few people as well, it’s amazing (and a little depressing) how common some of them were. Well, I’ve remembered some more. Again, all of the following is shit that has actually been said to me, and again I’ve included my own comments / thoughts that whilst not what I said at the time, was pretty much what I was thinking. And again, a disclaimer, not all hearing people are like this. Many of them are, in fact, lovely.

*Making random hand shapes and looking confused / irritated when I don’t understand*
Waving your hands about randomly is not sign language. It makes about as much sense as thinking that if you go “lllllrlrlrlrlrrrrrrlrlllllll” you’re suddenly speaking Welsh.

“CAN YOU HEAR ME NOW?”
I heard you the first time. I just didn’t understand you. If I started speaking Japanese, would you understand me then? But you can hear me, isn’t that the same thing? No? You don’t say.

“Perhaps you could add your father to your bank account and that way we could call him and discuss things without bothering you with a phone call you every time.”
Thank you for that suggestion, HSBC. Or you could just do you’re damn well asked and just text me if there’s a problem. I’m perfectly capable of managing my own financial affairs, thank you.

“You’re SO brave!”
Let me tell you a story. A few days after the D-Day Landings, my great-uncle parachuted behind Nazi lines into occupied France. If I’ve inherited any of that gumption I’ll be delighted. But calling me brave merely for getting on with my life somehow feels like an insult compared to the things that people have done and do every day. When I parachute into an enemy-occupied country, you can call me brave. Operation Jedburgh. Look them up.

*Covering their mouth with their hand and mumbling* “did you understand that?” *giggling*
So tempting to hold up my hand in a popular gesture and ask if you understood that…

*Grabbing my arm and spinning me round to look at them* “Hey! Didn’t you hear what I was saying? We’re shutting IN TEN MINUTES!”
Funnily enough, no I didn’t. Unhand me or I’ll exercise my right to self-defence.

“Where can I learn how to do that?” *After staring, fascinated, at my signing*
If you really want to learn, why not google sign language courses in your area? Most likely your local college will have a course or two. Or your local Uni. Just please don’t ask me.

“How much can you hear?”
It’s amazing how many times I’ve had this question. I suppose it’s a natural curiosity to wonder what I can hear but the fact is, it’s not a fair question. You’re asking me to judge what I get through my hearing-aids and something I have no memory or knowledge of. I can tell you that tannoys sound like lawnmowers if they ever learned to talk – quiet lawnmowers. I can tell you that if you listen to my hearing-aids through a device that some audiologists have (a sort of stethoscope but with a bit that hooks to your earmould instead of a freezing cold disc of metal) you’ll hear distorted, loud clanging noises. My brain has had to learn to make sense of that. How much can I hear? Do you know, I genuinely don’t know. I hear pianos, cars and birds, but only in isolation. The environment HAS to be quiet, or any noise is just lost in the din. I mean, why does it matter?

“Do we have to have the subtitles on? It’s so distracting.”
No, not at all. Here, let’s turn the sound off as well. Well, I don’t need it…

*Pointing to a car whose alarm is shrieking* “Can you hear that?”
Hear it, are you kidding me? I’ve had to turn my hearing-aids off. And now my tinnitus has a new noise to play with. Oh, great.

“What happens if I do this?” *tap hearing-aid / touch earmould / push earmould*
Hey, pal. Not cool. I want you to consider my aids as very much part of my personal bubble, OK? Also, inside my ear, my earmoulds are literally millimetres away from my eardrum. A direct blow – or an unexpected push on the outside of the mould – can actually be quite painful. Not. Cool.

“What’s it like to live in a world of silence?”
Whoa, ease up on the melodrama there, fella. Besides, I wouldn’t know. I have tinnitus, which is like a constant noise in my ears. Sometimes I wish I did live in a world of silence. Didn’t see that coming did you?

“Oh, I’m sorry, I said half-past eight. You must have misheard me.”
If you made a mistake with the time, be honest and own up to it. Don’t make me paranoid that I did mishear you after all, and that I can’t lip-read to save my life. Not. Cool.

“Does she drink tea?” *to my mother, literally while I was standing next to her*
No. She doesn’t. 

“Have you heard about God? God’s love is…”
“No I’m deaf, excuse me…”
*Shrieks* “God can cure you! God can cure all things! God’s love is all-powerful! He is all-highest!” *while tapping ears and waving arms in air and rolling eyes and holding up hands in supplication*
Oh God, let’s get out of here! Go, go, go!

“WHAAAAT’S YOOOOOUUUUURRRRRRRR NAAAAAAAAAAMMMMME?”
Sigh.

“Why can’t you use a telephone?”
Sigh, again. Just because you understand what I’m saying, doesn’t mean I understand what you’re saying. Tell me, how do I lip-read a telephone?

“Can you read?”
Can you?

“How do your hearing-aids work?”
No idea. All I know is; Microphone – delicate electronics – amplifier – earmould. There’s no magic. That really is all a hearing-aid is. And no, you cannot take it apart to find out. 

“How can you not know that? Everyone’s been talking about it for DAYS!”
FYI, my hearing-aids are not so good that they can pick out voices from the environment around me and make sense of them. Nowhere near. Also, I’m not a telepath.

“Are you deaf?!”
Yes. Well done.

Once again, the italics are just what’s in my head, and I really do believe that honest and patient answers are the best way to get rid of ignorance. It’s just that sometimes, one’s patience is sorely tested.

And most hearing people are OK. Really.

My Take on Chickengate

Wow. In the time it took to restart my brain after the BSL poetry festival (which was great btw!) and hand in my essay and then catch up with my life after obsessing about said essay, it seems a new meme has been created – “my chicken is ill”.

In case this needs explanation, there was a programme on BBC3 and iPlayer called Deaf Teens: Hearing World looking at how several deaf teenagers with varying backgrounds were dealing with becoming adults in a hearing world, going to college, uni and amazing deaf gatherings and in some cases, how the world reacted to them. One deaf teenager, waiting to go in her first college lecture, was approached by her notetaker, who due to a mix-up at student support had only been booked for one hour instead of two. The reason why she had to leave after one hour was because her chicken was ill. No word of a lie, she stood in front of a TV camera, looked the student in the eye, and said that she had to leave to take her chicken to the vet. I have to give that woman props for honesty.

Cue the twitterstorm, the facebook page, the jokes, the laughter. That notetaker took a kicking. Perhaps understandably, but the voice of reason came in the guise of Charlie Swinbourne, who made several good points; it wasn’t the notetaker’s mix-up, it was student support’s, the fact that the notetaker was able to sign, a rarity indeed and shows dedication, and as he says, she must have really loved that chicken.

But “my chicken is ill” still makes me laugh, and the page is still going strong, though we’ve moved away from chicken-crossing-the-road jokes to more mundane topics. I think the reason this phrase became such an instant hit was because it served as an ultimate example of the excuses that the world gives deaf people for not being accessible.

It wasn’t just that a notetaker appeared to be placing the health of a chicken above a deaf student’s access to their education.

It was LoveFilm emailing me back to say that they only offer subtitles on their foreign language films because a) their system didn’t currently support a wider use of subtitles and b) they were sorry for the inconvenience. (Inconvenience? That their online streaming is almost totally useless to me? That’s an inconvenience? I replied, quoting the Equality Act. It’s all gone quiet.)

It was whatsonstage.com saying that they don’t currently include whether a show is captioned / BSL interpreted in their listings but they were “looking into it”.

It was offwestend.com telling me pretty much the same thing.

It was HSBC telling me that they thought I was being unreasonable when I pointed out that their discriminatory practices were not only breaking the law, they were in breach of their own ethical codes of banking practice.

It was Student Finance England telling me they never received my travel and book receipts for DSA despite the fact that I sent them by recorded delivery.

It was the show organiser telling me they hadn’t booked an interpreter for the show despite having interpreters for the discussion beforehand because they couldn’t find one for the show. Despite having found them for the discussion beforehand… (Er, ASLI website? Agencies? Or just ask me, even. Try!)

It was the organiser of the poetry event standing up and saying that they hadn’t booked BSL interpreters for the spoken poetry because they weren’t interpreting the BSL poetry and that was fair… wasn’t it? (Hearing people can look at BSL poetry and at least guess, especially with more visual poets. What do you expect the deaf to do about spoken poetry? For pity’s sake, you’ve even got a projection screen above the stage you could have projected the words on. What’s wrong with you people?)

It was the [insert service] company who hung up on typetalk three times before I finally got through.

It was my Local Education Authority refusing to fund more note-takers at school because I was “doing too well” and they even tried to cut my funding.

It was the shop assistant who treated me like I was an idiot because I hadn’t understood what she was saying.

It was the DWP cutting my DLA without warning and making me go through a year of appeals and a tribunal before I got it back.

It was the manager of the JobCentre refusing to book me an interpreter because it wasn’t “in the budget”.

It was the woman who said I “spoke so well” she “didn’t think I’d need an interpreter” and then couldn’t understand why I got upset.

It’s the audiology nurses who call my name in reception.

It’s the receptionists who don’t bother to look at me to ask me questions after I’ve told them I’m deaf and need to lip-read.

It’s BBC iPlayer apologising for the umpteenth time because their subtitles aren’t working.

It’s the security guard who nearly jumped me because I didn’t hear him saying the shop was going to shut soon, and then apologised for not noticing my blue earmoulds.

It’s the whole goddamn world telling me that it can’t make itself accessible for me because its chicken is ill.

It was a moment where we all identified; a moment where deaf people bonded over an access fail and a surreal excuse that made it all the more memorable. Really, we should be thanking that notetaker, not only for her honesty and for spawning so many chicken jokes, but for giving us all something to unite over.

Cheers, and I hope the chicken made a full recovery. And apologies in advance to all my notetakers and interpreters whom I will be asking about their chickens for months to come… 🙂

I’m a fashionista! (And didn’t know it!)

The last week or so I’ve been a bit preoccupied, but enjoying the popularity of my last post, I had been a bit worried that revealing my inner, sarcastic voice might be too much, but it seems that far from it, I should let it out more often. Perhaps on a day-release basis.

Today, I’m thinking about Rod Liddle. Heard of him? As I type, he’s trending on twitter, and thus probably enjoying his own brand of popularity. He wrote a piece in The Sun that ostensibly attacks those who fraudulently claim benefits. I agree in principle – with the idea that those who fraudulently claim benefits should be put in the stocks. Where Rod and I differ, is his definition of a “not too serious disability”, the idea that there “is a lot of money to be made from being disabled” (excuse me while I cough up my coffee with helpless laughter), that being disabled is somehow fashionable (oh, so that’s why disability hate crime has gone up by 75%. It’s because people are jealous, and nothing to do with inflammatory articles like this), and that 80% of people on ‘incapacity’ are considered fit to work (erm, DLA fraud rate 0.5%, versus barely-qualified tick-boxing bureaucrats using a discredited assessment system? I know who I believe).

As a claimant of DLA, I invited Mr Liddle to spend a day in my shoes, or if he doesn’t like them, my mother’s shoes. My mother is one of those who “gets to park wherever she wants” thanks to a blue badge, and yes she does have motability car (which, by the way, is not free). Here follows a transcript of events during our day together. Enjoy.

*BUZZZZ BUZZZZZ BUZZZZ BUZZZZZ BUZZZZ lights flash*
“Arrrggh! It’s an earthquake!”
Actually, no, it’s my alarm clock. The buzzing is a vibrator – no, not that kind – under my pillow and the light is my clock. Just press the button to turn it off.
“Erm, thanks. What do I do now?”
Why don’t you try getting out of bed? That’s where I usually start.
“Ow!”
And do be careful not to walk on your big toes.
“Excuse me?”
Well, a kink in my feet causes you to walk on the insides of your feet, distributing your body weight through your bunions and your big toes. But you see, if you keep doing that, it gets painful, as you noticed. Just make sure you focus on walking on the outside of your feet at all times OK? It’ll also help with the minor kinks in your legs if you walk that way. Just don’t forget yourself.
“All the time? What kinks?”
Well, currently the suspicion is on Hypermobility Syndrome, if so, it would explain a lot, like why my knees can dislocate, why I have raging Iliotibial Band Syndrome, and why I can do this *touches arms with thumbs on same hands while twisting arms around*
“Argh!”
Sorry, I didn’t mean to scare you, that’s usually just a party trick.

*Later that day*
“Ow, my knee! My feet! My leg!”
Well, you decided you wanted to go shopping. If you’d told me you were planning on doing a lot of walking, I would have given you the knee brace and the walking stick. You’ve got to plan, my friend.

*Pop*
“Argh! What was that?”
You weren’t paying attention when you went down the stairs were you? If you misjudge the depth of a step, there’s a chance your knee will half-collapse, just to spite you. You’ve been warned.

“Hey! Why is that person looking at me like I’m a piece of dirt? What did I do?”
Erm, let me see…. ah yes, seems they asked you politely to excuse them, but you didn’t hear them, and so of course because the world revolves around them, they’ve assumed you’re ignoring them and pushed past you with a dirty look.
“What? But my earmoulds are blue for gods’ sake! Don’t they LOOK?”
Welcome to my life.

What’s going on?”
What?
“I’m supposed to catch this train, but everyone’s walking off. What do I do?”
Quick, follow them! And see if you can pick out someone who might be easy to lip-read and ask them what the tannoy said.
“What tannoy? How do I know they’re easy to lip-read?”
Did you hear that sort of quiet white noise that sounded vaguely like Sauron gargling with a lawnmower? That’s the tannoy. You can’t, but things to avoid are beards and moustaches. After that it’s pot luck. Good luck!

*Screech*
“What the hell was that?”
Probably feedback from the hearing-aids. Or tinnitus. Or you’re going mad. Don’t worry too much about it.

“What’s this person saying? They keep moving their head around.”
Tell them you need to lip-read and ask them to keep their head still.
“I did, but they’re still doing it.”
Ask them again, and be a bit more firm.
“I don’t want to make a fuss.”
Sometimes you have to. Now ask them again.
“I did, now they’re treating me like it’s my fault.”
Sigh. You’ve got one of the arseholes. OK, there’s two ways you can go about this. Either give up the conversation as a bad job and wander off, which will be interpreted as rude, or try and educate them, possibly ending in a row, which will be interpreted as rude. Which do you want to do?
Is there anything I can do that won’t be interpreted as rude?”
Not if you don’t understand what they’re saying, no. You’re kind of trapped, really. Rather than put myself through the stress, I prefer to leave it. Unless they have information you need, in which case you’re definitely trapped. Try getting them to write it down.
“I did, but now they’re treating me like I’m completely stupid.”
Hmm. Wait until they’ve finished giving you the info you need, then repeat after me… ready? ‘I am an MA student, and it’s not my fault you don’t know how to communicate with deaf people. May I suggest a deaf and disability awareness course? And incidentally, fuck you.’ Now, run! Hobble, damn it. OK, you had to make a quick exit, but don’t you feel better?

“Oh, what a day. Why do my legs ache so much?”
Because you don’t walk right, even with the knee brace and the stick. Your muscles are always being pulled ever so slightly wrongly, not so much that they’ll do anything dramatic, occasional knee pop notwithstanding, but enough that they don’t like it and complain at the end of the day. I’ve found only two effective remedies; steaming hot baths and painkillers. Mind you, I’m probably not that disabled by your standards. I can still walk, after all.
“Whatever. It’s good enough for DLA, right? Where do I get it? What’s this?”
This is the paperwork. A half-inch thick form, and don’t forget to include submissions from all your consultants and doctors for every condition you cite, of course you’ll have to track them all down first, and they might charge you. but it’s worth it for the DLA right?
“I guess so…”
Well, here is how much DLA I get, and here a recent BSL interpreter invoice. Does anything strike you about them?
“Um…?”
This one is per week, and this one is per hour. You’ll notice it’s roughly the same amount. One month’s DLA is about six hours of BSL interpreting, or 16 taxis, since public transport here is crap and I’m hardly going to walk to the train station. Let me know if you can figure out a profit margin. You’ll notice I’m actually losing money, hence why DLA was brought out in the first place. It’s because being disabled is actually bloody expensive. Are you getting it yet?
“Well, bugger me.”
There is someone here who gets more DLA than me though, perhaps you’d like to give her shoes a try before you go to bed?
“All right, then.”
Allow me to present my mother. I’m sure she’d love to let you borrow her shoes for a bit, oh, she’s already gone. Seems she’s enjoying her new-found freedom and decided to visit Westonbirt Arboretum, just for the hell of it.
“Huh?”
I know, wild, huh? Anyway, here you go…

*A bit later*
“Wheezes… gasps… wheezes”
Oh, did I not mention? She has Chronic Obstructive Pulmonary Disease. Come on, it’s another step to get upstairs. You can make it.
“Wheezes”

“Oh, I’m so tired. Those stairs are so far.”
Well, this is what you have to do to get higher rate mobility. You want a car don’t you?
“I suppose so. Can I go to bed now?”
Certainly, just put this mask on first.
“What the hell is this?”
It’s an oxygen / breathing mask. She also has Sleep Apnoea, so if you don’t wear this, you’ll stop breathing. Come on, it’s easy to set the straps. I’ll show you how to switch on the machine…

Oh, what’s that? You’ve had enough of pretending to be disabled? You’d rather be able-bodied? But I thought it was so fashionable! Come on, you said a month, you haven’t even made it one day!

[DISCLAIMER: The above events did not happen. Maybe I’m being unfair to Mr Liddle, maybe he’d last longer than one day. But not as unfair as he’s been in his bloody article.]

Links:
Liddle’s article – http://politicalscrapbook.net/2012/01/rod-liddle-disabled-the-sun/

Diary of a Benefit Srounger’s great response – http://diaryofabenefitscrounger.blogspot.com/2012/01/sacrifice-more-hang-cheats-out-to-dry.html

Shit hearing people say…

Inspired by what seems to be the meme of the moment, “shit (people) say to (other people)”, which seems to have begun with “shit girls say”, followed by “shit white girls say… to black girls”: http://www.youtube.com/watch?v=ylPUzxpIBe0, which in turn inspired this deaf guy to come up with his own version: http://www.ehwhathuh.com/2012/01/crap-hearing-people-say-to-deaf-hoh.html, I’ve come up with my own list of “shit that hearing people say”.

The following is shit that has genuinely been said to me. I’ve included my own mental comments in response to these statements / questions, my actual response at the time was often far more patient and polite. But sometimes, it would be nice to ignore the conventions of polite society… (A disclaimer: not all hearing people are this stupid. In fact, some of them are lovely.)

“Oh, are deaf people allowed to drive?” (multiple)
Yes. When you ban music, radio, mobiles, people from talking and any and all auditory distractions in cars, you can take my driving licence. In fact, not even then. It’s mine, I passed my test first time, I have a clean record and ten years’ worth of no-claims bonuses, so naff off.

“I find how hearing impaired people can communicate really fascinating.”
This makes me twitch on several levels, but the main one is: often I’m doing my best to communicate with you because you’re doing F-all to communicate with me. If you’re going to patronise me, I’m not going to bother.

“Aha! How did you know what I was saying?”
Because I know the topic of the conversation, and you’re predictable. Just because I correctly guessed what you said when I wasn’t looking at you doesn’t mean I’ve been faking my deafness for the last 25 years. But saying this as if you’ve just caught me with my hand in the cookie jar just makes me want to hurt you.

“You have a selective hearing loss!”
Do I? I must inform my audiologist of this, as according to their scientific tests, my hearing loss is pretty even, though there is a dip in the low-pitched range. I had no idea I had voluntary control over my level of hearing, I must submit myself to a medical study immediately.

“I bet you’re not really deaf.”
You’ll lose that bet. How about putting £10,000 on it?

“You don’t look deaf.”
What do you want me to do about it? What do deaf people look like anyway?

“You speak so well, I didn’t think you needed an interpreter.” (!!!!)
Wait, what? Did you even ask me? Just because I’m a skilled lipreader and mimic, you’ve decided to punish me for what hearing people have always wanted me to do; speak well. Fact: production is not the same as reception. Communication is a two way street. Now get me an interpreter or there’s going to be a mushroom cloud.

“Hey, do you know this sign…” *Y* *don’t* *you* *F* *off* while slapping hands together randomly in an order that all deaf people recognise because they’ve been asked this a lot of times, usually by people with a mental age of 5*
Honestly, officer, my hand just slipped. And my foot. Do you think they’ll be able to re-set thier nose? Wait, why are you arresting me?

“You don’t sound deaf.”
Not all deaf people are the same, and some go deaf after they started learning to speak. Some do well with hearing-aids, some don’t. Some become good mimics, imitating lip shapes and making sounds until corrected by hearing people around them. It’s no coincidence that I still haven’t mastered several ‘soft’ sounds that aren’t on the lips, and that I say some words in a ‘strange’ way as I said them in a particular way for so long before I was corrected that it’s become habit. OK? Have I justified myself enough?

“It doesn’t matter.”
Oh, my lord. You DID NOT just say that to me. You did not just repeat something a mere three times before giving up and saying it doesn’t matter. If it didn’t matter why say it to me in the first place? Now that’s going to bug me. And thanks, for the boost to my self-esteem that you can’t be bothered and you’d rather give up trying with me altogether. Do you have ANY IDEA how many times and how many people have said that to me, to deaf people, the world over? Effectively, what you’re saying is “it doesn’t matter if YOU haven’t understood.”

“I’ll tell you later”… “oh, I forgot.”
*Frustrated growl*

“Why don’t you just get a cochlear implant?”
I see no reason why I should discuss my medical details with you, suffice to say that whatever some idiot newspapers might say, cochlear implants are not suitable for all deaf people, in the same way that glasses are not suitable for all partially-sighted people. Sometimes glasses won’t work. Sometimes cochlear implants won’t work. Capisce?

“Are you listening?”
No, I’m lip-reading. Dick.

“Can you read their lips and tell me what they’re saying?” *pointing to someone fifty feet away*
Surprisingly enough, no. Nor can I see through clothes, or be repelled by Kryptonite. I have enough trouble with people ten feet away.

“You’re deaf? Oh, sorry” *as if I’ve just said that my entire family has died, including the cats*
*Sniffling* It’s OK… It’s just such a tragedy. Whatever did I DO to deserve this misfortune? *cries and wails*
No, not really.

Is that a bluetooth device? Where can I get one like that?”
Easy. Stand next to a cannon. Send the audiologist my regards.

“Oh, hello.” *turn to computer and mumble unintelligibly. Look up* “well?” (Receptionists in audiology departments should be trained out of doing this with electroshock therapy)
Well, what?

“If you’re deaf, how did you learn to speak like that?”
*Deep sigh* Lip-reading, imitation, random noises, correction. Can we move on?

“Are those earphones? Can you turn your music down, please?”
No, they’re not, and I think you’ll find the music’s coming from the pub over there. Why don’t you go over to the big guy with all the tattoos and ask him to turn it down? Here, I’ll video it on my phone and put it on YouTube.

“What about when you have children? Aren’t you worried they might be deaf?”
That’s the last thing I’m worried about. I’m more worried about any deaf children I might have running into ignorance like I’ve put up with. I want what most people want; a better world for our children, whoever they grow up to be.

“Why are you ignoring me?”
This isn’t even worthy of a response. I’ll email you my audiogram in an attachment. Or it might be a virus. Say hello to the BLUE SCREEN OF DEATH!

*To my interpreter* “How do you do that?”
Erm, excuse me, I’m over here, and I think you’ll find the interpreter is on my time. Thank you.

I should emphasise that the comments in italics are just responses in my head, often that I’ve come up with later, after the incident, and that I’m usually as polite and patient as I can be, as I take the view that answering questions honestly is one of the best ways to dispel ignorance. It’s just that sometimes the questions are just so… well… stupid.

And again, most hearing people I’ve met are lovely. Really.

Telling Our Stories

Tomorrow, I’m due to perform my BSL poetry at Bristol’s M Shed as part of Resistance: Telling Our Stories, an event that has been organised as a (slightly belated) nod to Disability History Month, with the backdrop of Resistance: Which Way The Future?, a media installation directed by Liz Crow of Roaring Girl Productions which is on at the M shed from 5th January to 5th February 2012. More info can be found here:
http://www.journomania.net/culture/38-art-and-culture/517-disability-arts-at-bristols-m-shed-for-uk-disability-history-month-.html
http://www.roaring-girl.com/productions/resistance-on-tour/

I was looking forward to this anyway, but with the twitterstorm that blew up over the #spartacusreport (which I gleefully added my little raindrops to) last monday, the triple defeat of the government in the House of Lords over the Welfare Reform Bill, which Lord Fraud, excuse me, Freud, then attempted to roll back as soon as the Labour peers had left* and the governments’ response which basically seemed to be that they were going to keep pressing ahead with the WRB, despite all protests, it seems to me that the themes of Resistance are just as relevant as ever.

*Mason Dixon gives a colourful and Hollywood-worthy version of events: http://masondixonautistic.blogspot.com/2012/01/us-and-them.html

Resistance looks at the Nazi eugenics program, Aktion T4, during which hundreds of thousands of disabled people… well, disappeared. They just went away in grey vans and didn’t come back. And apparently, not very many people questioned it at the time. It probably didn’t help that Nazi Germany was trying pull itself out of a recession, and the propagandists had done their best to tell everyone how much these ‘useless eaters’ were costing the state, via posters like this: http://en.wikipedia.org/wiki/File:EnthanasiePropaganda.jpg
The translation is: “60,000RM. This is what this person suffering from hereditary defects costs the Community of Germans during his lifetime.”

When some Minister or newspaper bangs on about benefit scroungers / how much the welfare state is costing / benefit fraud, while the coalition sits idly by while the HMRC aids and abets what have to be crimes against the treasury, I think of that poster.

And it’s working. Disability hate crime on the up, people living in terror of Work Capability Assessments, people with mental health issues having to be talked down by kind voices after receiving a particularly nasty letter from the DWP. Well fucking done.

A little fact-checking.
1) DWP own figures put fraud at less than 0.5%.
2) Of the “5.2 billion lost to error and fraud”, only 1.2 billion of that was fraud.
3) The coalition has said they want to cut payment of DLA by 20%.
4) They also say they want to ‘protect the most vulnerable’.
5) Unclaimed benefit in 08/09 was 17.7billion (12.7billion means tested, 5 billion tax credits).

Compare and contrast 3) and 4) with 1), 2) and 5). Conclusion: there are far less benefit scroungers out there than the coalition would have you believe. Am I wrong? Feel free to google it and check. In fact, I want you to google it and check. Challenge me. Challenge the coalition. Just please don’t ignore the Welfare Reform Bill.

And if, after reading the Spartacus Report, you think we should all take a deep breath and be allowed to look at the WRB proposals properly, go over to ‘Pat’s Petition’ and sign the petition to stop and review the cuts to benefits and services.

Spartacus Report/ Responsible Reform:
https://skydrive.live.com/view.aspx/Responsible%20Reform%20for%20screen%20readers.doc?cid=cba86408918caa9e
Pat’s Petition:
http://epetitions.direct.gov.uk/petitions/20968

For my part, I hope lots of people will come and check out the Telling Our Stories event, there’s lots of happy stuff as well as serious stuff, and it promises to be at the very least an interesting day out! Plus, there’s my poetry 🙂 For those who can’t make it, the media installation will be on until 5th February.

Which Way The Future?, indeed.

Spartacus Report

The main event for me yesterday was the launch of the spartacusreport / Responsible Reform report on the proposed changes to DLA, funded, written by and supported by the very people the proposed changes affect, and ooh, does it make for enlightening reading.

http://www.ekklesia.co.uk/files/response_to_proposed_dla_reforms.pdf

For example, where 98% of respondents opposed the qualifying period being raised to 6 months from 3, this somehow got translated by the government document as “some organisations were in favour of our proposal to extend the Qualifying Period from 3 months to 6 months before benefit would be paid… However many organisations and some individuals were not in favour of this” Er, excuse me? 98% against gets translated to ‘many’ and ‘some’ and 2% for is translated to ‘some’? Making it look as though the numbers aren’t as damning as they are? Google it if you don’t believe me. Even Boris Johnson objected in his submission: http://blogs.telegraph.co.uk/news/danielknowles/100127807/boris-johnson-turns-his-fire-on-the-governments-reforms-to-disability-living-allowance/ I think I’m starting to like Boris. It’s a strange sensation.

What I find even more damning though, is that the #spartacusreport was trending on twitter yesterday, even at first place for a short while, then hovering in second for the whole afternoon. It received support from various celebrities, including Stephen Fry and Tim Minchin, and even John Prescott noticed. It attracted millions of tweets.

And yet, where is the BBC report on this amazing reponse to the Welfare Reform Bill? Where is the Daily Mail story on this socially-funded and researched report? This must be it: http://www.dailymail.co.uk/news/article-2084445/Incapacity-benefits-10-000-sick-Britons-abroad-claiming-1m-week.html
Oh, my mistake. Also, notice the ‘MAIL COMMENT: the welfare state has become a bonanza for the feckless’, mere days after being forced to print that, actually, the fraud rate for DLA is less than 0.5%: http://www.dailymail.co.uk/news/article-2083294/Boris-Johnson-attacks-Tory-plans-benefits-squeeze-disability-living-allowance.html?ito=feeds-newsxml
It’s like they’ve learned nothing.

Where is ANY mainstream news report on the twitterstorm that #spartacusreport inspired? It’s times like this that make me feel paranoid.

And how appropriate then, that the Resistance Exhibition Event: Telling Our Stories opens at M shed in Bristol this weekend, as a nod to Disability History Month. I’ll be performing BSL poetry in Studio 2 on Saturday as part of this event, all are welcome! http://mshed.org/whats-on/events/resistance-exhibition-event-telling-our-stories/ Check out the poster – how cool is that? Posed by none other than Liz Crow, the director of Resistance. Come on down!

Oh, and another thing: according to the pope, gay marriage is a threat to humanity’s future: http://www.reuters.com/article/2012/01/09/us-pope-gay-idUSTRE8081RM20120109
There’s a lot of things I could say in response to this, but a tweet by Patrick Strudwick has summed it up perfectly:

Today the pope said that gay marriage undermines “the future of humanity itself”. I say telling people not to use condoms already has.

Well, quite.

Update:

An hour after I published this, the Daily Mail posted this. They pretty much agree with everything I said, and more. They tear into Cameron and the WRB, defend the disabled and quote the Spartacus Report. Not only do I take back (some) of what I said about them in my previous post, I think I may need a lie-down to get over the shock.

http://www.dailymail.co.uk/debate/article-2084706/David-Camerons-Welfare-Reform-Bill-Hiding-truth-way-achieve-it.html

Fan me, someone, fan me.

The definition of unfairness

Sometimes life seems a little unfair. I’ve lost the last two weeks to a flu bug / chest infection, my festive season was punctuated by mucus; I genuinely don’t remember much between Boxing Day and New Year’s Day, which was two days after I started taking the antibiotics. I’m behind on my MA work. I’m in the middle of a dispute with HSBC that, as soon as my brain is back on track, will be going to the Financial Ombudsman, but there’s a time limit, so my brain better get a move on. I’ve often felt that this world is very silly; telling us deaf and disabled that we should get out there more and then placing all sorts of barriers in our way. In short, as I lie here in a soft bed with a gurgling chest, high temp, wi-fi internet, a box of pills within reach and coffee on request, I felt a little bit hard done by.

And then I read this.
http://motherjones.com/politics/2011/12/deaf-prisoners-felix-garcia?page=1
http://charlieswinbourne.com/2011/12/20/uncovered-deaf-prisoners-treatment-at-the-hands-of-the-us-justice-system/

Felix Garcia was convicted of armed robbery and murder in 1983 on the strength of his sibling’s testimonies, and his signature on a piece of paper his brother had given him to sign. His brother was later to admit, in a letter and then under oath, that he had lied in order to avoid the death penalty; that he had fitted Felix up. He had asked Felix to sign a pawn shop receipt because he himself didn’t have ID on him at the time. That pawn shop receipt became the only physical evidence linking Felix to the crime. The ring the receipt was for was from a robbery / murder committed the previous day. Pretty soon the law came looking for Felix. The law was not kind. Taking his brother’s – and his sister’s – testimony and the receipt, they put him on trial, a trial Felix understood little, if anything, of. Skip forward 29 years, and he’s serving a life sentence. He has a lawyer, who I would nominate for Lawyer Of The Decade Award if there was one, who has tried her best to get him freed. Various statutes of limitation have conspired to keep Felix in jail, and a few years ago, a judge rejected his brother’s sworn testimony that Felix was entirely innocent because he “couldn’t tell what was true”. Felix is in a jail system that, despite strong disability rights laws in America, makes little or no concession to his deafness. He’s been beaten, raped, and abused by fellow prisoners and guards, often for causing offence by ‘ignoring’ or misunderstanding them. The governor of his state, who could in theory offer him a pardon, is a Tea Party darling who is very unlikely to do so. It’s all such bullshit.

I’m trying to think of an example where someone has been so thoroughly screwed over by just about everyone that was meant to help them; his family, the justice (ha!) system, the rehabilitation (ha!) system, the powers that be. It’s not coming to me.

I’ve signed both the petitions:
https://www.change.org/petitions/free-felix-garcia
http://www.change.org/petitions/tell-the-state-of-florida-free-felix-garcia#

and started following the Free Felix twitter account: https://twitter.com/#!/free_felix

But I fear it’s going to take a lot more to reverse this travesty.

And just as worrying: how many deaf prisoners are there out there? How many don’t have access to their trials, to rehabilitation, to appeals? No-one seems to know…

I hope that Pat Bliss, Felix’s lawyer who has worked for him pro bono for the last fifteen years, gets some recognition for her efforts, and that Felix, in the end, gets some justice.

Kitty got buff.

Obviously, I’m talking about my kitten, not anything else. Recently, someone asked “how long has he been a kitten now?” or something to that effect in response to another one of my facebook statuses bemoaning his tendency to break small things / knock over plants / eat plants / wake people at the crack of dawn. And even more recently, I went away for 24 hours, and when I returned, it did seem as if little Yuki had grown noticeably in my absence.

Having looked it up, it seems that a kitten can be considered so until about 1 year old, when they’ve settled on their adult shape and got most of their bulk, but won’t fully stop growing / maturing until about two years old. They’re sexually mature at 6 months, but not for long, as he’ll tell you. Yuki is now seven months old. When we got him nearly four months ago, he was a small, gangly, leggy, unco-ordinated, fuzzy, fluffy and frankly stupid kitten. With Gizmo-from-Gremlins worthy ears. That are completely useless. Yes, life and karma conspired, and we found ourselves with a deaf white kitten.

Yuki at three months

"I'm blurry because I won't bloody sit still"

See what I mean about the ears? What fascinates me is that they still work in every aspect other than hearing; they indicate interest *pointing forwards, what’s this? Can I play with it?* annoyance *twitch / flick away, leave me, woman. I’m trying to sleep* and nervousness / excitement *half flat, what’s this? What’s this? What’s this? I must run at it very fast!* they still swivel around randomly (why, I don’t know) and twitch when he’s asleep.

I have no idea if he even knows what their original purpose was. But he seems to have fully adapted; he can identify the vibration of the front door shutting, he knows at least four signs (Hello / Come on / No / Get Down!) and has a very disconcerting habit of looking behind him by turning his head upside down. Literally, he leans or tilts his head back until he can see what’s behind him. Believe me, it’s very strange, and not a little unnerving when you appear to be being observed by a cat with an upside-down head. He also, unusually for a cat, likes to be held tummy-up so he can see all that’s around him when he’s picked up. He sleeps like that too. I can see he’s going to be a confident deaf cat. Good on him. This is him now:

Yuki at seven months

"check out these radar dishes, baby!"

My kitty got buff.

And lest Lucy, our elderly, 22-year-old, ridiculously fluffy tuxedo cat feels left out, here she is in her most alluring pose:

Lucy in sunlight

"I still got it"

Unfortunately, they still don’t get on. If only he’d stop playing with her tail. But, hey, he’s still got the excuse of being a stupid kitten – for a little while at least.

America is so far ahead.

Not in economic terms, but in terms of how deaf people are portrayed in mainstream TV, particularly those who use sign language. In America, signing deaf characters have featured in The West Wing, CSI, Law and Order:SVU and ER, to name but a few. Whilst here in the UK, Shameless has shown that a signing deaf person can be as conflicted, unpredictable, independent or even downright psychotically angry as any hearing counterpart with the character of Danny, very few other British shows have had such strong signing deaf characters. Danny’s leaving scene in Shameless was as stunning for the fact that a deaf person (Shock! Horror!) was shown being so incandescent with rage they actually beat their own father to death (but it seems the guy may have had it coming) as it was for the violence – nothing graphic, but a hell of a lot of beating. Good for you. That’s a deaf person doing it for themselves on national telly, that is.

Finally, being a geek has paid off. The Big Bang Theory has rewarded my years of loyalty with a signing deaf character – and not the kind that’s ever so brave, and deals with the world despite all that is thrown in their way etc, but the kind that got her claws into Raj and took him for everything she could get. Go girl! Most of the jokes were funny, though I did feel uneasy at all the talking to each other while the girl looked on, vaguely puzzled, while the boys got laughs, it just seems that the type of gal who would chew out Penny and Howard with a lot of *somethings* and stomp off in a huff would wanna know what was going on. That aside, she was independent, she was sassy, she was pretty, and in the end she was ruthless, breaking Raj’s heart when it became clear the supply of money had dried up. And she did it in a funny way. And she taught Raj to sign. Was there anything she couldn’t do?

And I loved the way that Penny’s claim that “Disabled people are nice. Everyone knows that.” was challenged for the generic fallacy it was; not that we aren’t nice, but aren’t we allowed to have bad days and be grumpy like everyone else? Assuming disabled people are nice all the time is like saying we’re not allowed to be as moody and unpredictable as ‘normal’ people. Just ask the train station guard I had a brief word with yesterday when I discovered that both the assigned disabled access gates (the ticket operated things that let you access the platforms) were letting people out, but not in. There was tutting, and there was a “what’s the big idea?” and a muttered, half-hearted “thanks” as I was finally allowed to hobble through. I doubt he’ll be voting me for the ‘genteel spice’ award anytime soon.

The Big Bang Theory – well written, hilarious, and good kudos for a strong signing deaf character and for challenging preconceptions. Clearly, the natural next step is to show a deaf or disabled scientist /  geek. We’re out there, you know.