Please; Somebody Tell Me Kids Aren't All Vile.

You know the drill with this blog. I'm just blurting stuff out so I don't go crazy.

So, I'm sat here with no food because I couldn't face going to the supermarket. Why not? I popped in to the nearest one yesterday, and got a ton of piss-ripping from some little kids. Greasy, tracksuit wearing div kids. Thick people's kids. Too harsh? Their parents must be pretty thick not to bother teaching there kids that NOT EVERY ONE IS THE FUCKING SAME.

Grrr. I'm so tired of it. It doesn't get ANY easier, and I just seem to get angrier as I get older. I have CP. So what? Why does this make me such a bad person?

I used to say I hated children, because of the staring. Then - like a twat! - I decided I wanted one. I'm going to be a dad before the year is out. Am I asking for it? If my child ever, EVER gives someone a hard time the way I get such a hard time, I will have failed. I will hate myself (and them) for the rest of my life.

Presumably thick people's kids are till going to give me shit in front of my kid. That'll be fun.

The Slippery Slope Of Ableist Discussion In 140 Characters Or Less.

I really like @EverydayAbleism. It's a fantastic idea. Sharing people's accounts of ableism in the real world. Often very personal. Often moving. I speak to a lot of interesting people because of it.

Last night, my experience was somwhat bitter. Your mileage may vary, etc etc.

The topic of conversation was ableist language. Lots of interesting accounts being retweeted. Lots I agreed with, and lots I had to say.

The conversation headed into the territory of mental health. I'm glad to see mental health issues being discussed in parallel to physical disabilities (I have something of a history...) and I think it's long overdue.

An opinion that I voiced about MH language struck a raw nerve with several people, I think.

To recap; I had seen a lot of words being challenged, which I agreed should be challenged. Words like:

Spazz. Mong. Retard. Cripple. Schizo. You get the idea.

Then the discussion moved to words like:

Mad. Bonkers. Crazy. Idiot. You get the idea.

Still with me? Good. Here's where I have to pitch in with my two pence worth. I say (and I stand by this) that words like 'mad' are not in the same sphere as 'spazz'. They have an informal, innoffensive use to my ears (mad/crazy/bonkers) to describe THINGS (NOT people) which I'm okay with. The weather can be a bit crazy. A shirt can be a bit mad. A song can be bonkers. This, I was repeatedly shot down for. Some very strong views that I was condoning ableist language. Really?

I don't regard the derivation, but then I'm not condoning describing a person with mental health issues as 'mad' either. That IS offensive. And stupid. It's also stupid to think that I am condoning it from the discussion I was drawn into last night.

I have a vague rule. If a word is clearly a slight on a medical condition, (i.e. Schizo) I'm not cool with that. Calling me crazy because I have a history of MH, also not cool. Calling me out for discrimination for using a genericised term like 'mad' to describe something (NOT someone) is also not cool.

I hope you can see my point. Why does this matter? Because we have to have a sensible(ish) line where we don't discredit the arguments against ableist language. Defining a 'mad weekend' as being equal to calling someone (anyone) a spazz is very, VERY dodgy ground. Ground we cannot afford to lose. That's why I won't go there, and I won't be bullied into agreeing. But here's the point; it's up to me. I'm not calling you bonkers; I may refer to one of my own songs as bonkers. You can not like that. That's fine. I think it's dodgy ground, that can discredit a lot of the challenges we throw out there, but there you go.

I hear ableds describe each other as 'spaccas' for doing something stupid. It goes right through me. I hear someone say 'You're mad, you are!' in a David Brent kinda way because they did something 'wacky'; it really doesn't bother me. I cannot be the only person who thinks that seeing these scenarios as the same is potentially counter-productive. I just can't.

It's often overlooked that ableds use terms like spazz without aiming them at disabled people. They're synonomous with 'stupid/clumsy/slow'. This attitude needs challenging too, not just insults thrown at us.

IF all these words are on the same spectrum, they are at different ends. When the word 'wild' was put forward as being problematic, I got the impression I was being trolled. Maybe I'm playing into it, but I feel we have to have these conversations honestly.

So, yeah; I'm not going to feel bad about saying I'm looking forward to a mad weekend, or whatever. I am going to call people who call someone a retard for spilling their tea. There is a difference.

If you disagree, fine. Guess what? It's up to you. You HAVE to maintain control over what language you find accepable, but you can't pick and choose what offends others affected by these issues for them.

I Am Falling Apart. Literally.

My body has had about enough. I'm fine, but my body feels like it's ready to be shut down. Mostly, I feel like I'm going to crumble into several pieces on the floor.

I went to the gym today. I need do that a lot, mainly to maintain mobility. I've been majorly slacking on it. I'm paying a heavy price at the minute. That meant literally, too.

I weighed myself. My BMI is now hitting 29.4. I'm seriously close to being considered obese. WTF? I don't look that fat, surely? I don't feel good, whatever.

I used to feel like I couldn't be too healthy, in case I jeopardised my DLA. Interesting convo with tweeps the other day on all this.  I'm not alone on this one. How fucked up is that? To think that you can't try too hard to manage your condition, in case it's used against you. I'm not having it. I'm not going to allow myself to feel like shit for fear of what the DWP could do to me. That's too crazy. I'm going to do everything I can to get as healthy as I can. Starting from... now. Honestly, I'll be in a wheelchair within a year if I don't.

It's really hard, of course. Sufficient spoons to exercise are few and far between. I REALLY have to force myself to work out. On top of the music thing (which I barely have the spoons for at the moment) it's near impossible to THEN go to the gym. I keep telling myself it should be easier. It's not getting any easier.

Those of you who also have mobility issues; how are you managing it?

New Blog Thing.

Y'all got clever names for your blogspots.

Okay, so I think spoonie stuff is gonna live here from now on. I need to be a bit more career minded on my other websites, so I'm keeping this stuff separate.

It's on here cause every disability blog I read is on here. No Wordpress, no fancy domains, this is fine.

Got a thing I need to say about exercise. Remind me tomorrow. It's late.

The Drake Music Lab (And The Continuing Wonder Of The iPad).

So, last Friday was big fun. Spent the day at the fantastic Graeae Theatre in That There London for Drake Music's Laboratory Day. It was a big meet-up and jam session for disabled musicians from all over the UK. Drake Music invited around 15 artists that they keep in contact with (including me, obvs) to see what could happen when we're all in the same room. It was ace. One of those proper Aren't-I-A-Lucky-Boy days.

For those unaware, Drake Music is a fantastic charity that works to remove the obstacles that disabled musicians face. They're a seriously forward-thinking bunch. Drake aim to make light work of unravelling the problems disabled musicians face. From technology to accessibility to furthering creativity, these guys really know the issues affecting disabled musicians.

Perhaps not surprisingly, iPads were everywhere. Y'all know how much I love all things Apple. I've talked about my enthusiasm for the iPad as a music making tool before, but the Lab showed the device being used at a whole other level. The iPad is a musical instrument for many of these guys. Garageband especially is a beautifully accessible tool. Musicians with very limited use of there hands are able to play, really play, chord sequences and riffs with the Smart Instruments.

The iPad as all in one music making device is a hell of a thing. I couldn't help but think how different these musician's lives would be without the device. I've honestly no idea whether anyone at Apple honestly understands what the iPad means to people with disability. Properly revolutionary stuff.

We made much music. Aross iPads, percussion, vocals, loopers; nothing was off limits. It was massively good fun, and I really REALLY hope Drake Music are able to run more projects like this. If you were there, you know how much fun it was. And of course, it was awesome to meet y'all... :)

Stepping It Up, Paralympic Style.

So, yesterday was fun. You may remember how excited and inspired I was by the London 2012 Paralympics. Life changing stuff for many people, fo' sho'.

Yesterday I had the chance to go to the Team GB Prep Camp in Loughborough, to spend the day training with Team GB coaches and athletes. It was a hell of a thing.

I've always tried to stay on the ball with fitness, despite my shady past with the ol' recreationals. Yesterday was the first time I've really tried to step it up.

I've been hitting the gym and the pool regularly for the last few years, partly out of vanity, partly out of necessity. Although CP is a non-progressive condition, for me it's one that gets a lot worse without management. Without exercise, I'd grind to a hault. Yesterday I learnt a hell of a lot about managing it, from people who really know.

The day was made up of various workshops and talks, as well as loads of hands on stuff. I learnt that everything I know about exercise is wrong, in the context of disability at least. Loads of famous faces from London 2012 were there. I said 'hi' rather sheepishly to Jonnie "Man Crush" Peacock. Chatted to Richard Whitehead(!), who assured me I'm not too old to get serious about sport. Best of all, I spent most of the day training to sprint with T35 sprinter Sam Ruddock, who qualifies as one of the coolest people I've ever met. Proper pro, and proper nice chap.

Most of all, it was fascinating to meet other disabled people, and seeing how far people can push themselves. There were kids there who you just know will be the next big stars of Paralympics GB.

As for my own future in disability sport, I came away with a feeling that it would be rude not to give it everything. I met people who had much more serious impairments than me. Some of these people were just starting out. Some of them had a few Olympic Golds to ther names. Right now, I feel like if I can do something in sport, I really should. It's not for everyone, but for me, it feels like the only logical answer to managing my disability.

One kid sticks in my mind. He had quite noticeably CP, more so than my own. During the Q&A, he asked Jonnie Peacock a question.

"Do you think that having a disability gives you more confidence than other people? I feel more confident, because, you know, you REALLY have to prove yourself!"

Not surprisingly, everybody in the room agreed...

ESA Latest (And More Junk Mail From The DWP)

Spoonies! Another quick update on my ESA/WRAG adventures. 'citing!

So, you're probably up to speed by now, but here's a quick recap. Like many of you I've been moved to ESA from Incapacity Benefit. They sent me that stupid, irrelevant form; you know the one, "tell us how you manage carrying a large empty box..."

I told them very specifically that I believe I should be put straight into the Work-Related Activity Group. After all, I make records, music videos, it would be wrong to say I can't do anything. Lot's of people on ESA genuinely can't work, it would be an insult to those people for me to include myself in that group.

Nevertheless, I face a lot of challenges with my disabilities. I figured WRAG would be able to help me. Sure enough, a prompt reply to my first form told me I would be in the WRAG. After hearing nothing for months, I called the Jobcentre to find out why I hadn't been asked to attend an interview yet. The people I spoke to were dumbfounded; nobody has ever asked to be seen re WRAG, I was assured.

Some months later, I saw an advisor. She explained that I would not be required to attend a medical, as my form must have explained my condition accurately. I explained that it explained very little, only that I had asked to be put into the WRAG, which (I presume) accounts for the prompt decision. I waited months for this interview, remember. Turns out, this interview's primary purpose was to explain to me that I was not required to attend any further interviews, and my ESA payments will continue. Despite the best intentions of the advisor, no real help towards me working was offered.

So, after all that, this amused me.



This explains exactly how much of my benefit will be cut if I refuse to attend the interviews I haven't been asked to attend. Remember, I've been told I won't be asked to attend any more.

Makes perfect sense.

Of course, it's a generic letter. You may have one. But, especially in my circumstances, it's faintly ridiculous.

Here's as far as I've got on making sense of ESA. Help me out on this one, this is all I've got. Based on my experiences so far, I'm thinking that:

A - All of us will be treated with the presumption that, while being fit enough to work, we will do everything we can to avoid this scenario, and will lie and cheat if necessary to avoid working. That's why we need to be warned of the dire consequences in stern letters like the one above.

(but)

B - If, like me, you consider yourself capable of working with the right support, you'll get nothing. There is no support, the process serves only to weed out these imaginary work-dodging disabled people the government keeps telling us about. It's a purely defensive strategy, with no genuine motive to help people. Genuine support is not built into the process, because none of us want to get help anyway, RIGHT?

Too cynical? Your mileage may vary, but I can't see it any other way right now.