You Are My Sunshine...

This has had me sufficiently baffled twice now. Baffled enough to post here and ask:

"Why, why has Homebase got 36 barbeques currently on offer?"

I mean, come on. A cheap one, a mid-price one and one, just one, of those very silly ones I can understand. Maybe even two of the cheaper ones, but 36? What has led a DIY store to believe that people need this amount of choice, especially after last summer! The number, incidentally, comes from their television advertisement not the link, which is in fact a helpful buying guide for those venturing into unchartered barbeque territory.

What's fuelling this excessive consumption? It all smacks of Nano skins to me. No good to own something a bit cool these days, oh no. It has to be cool, and original. Want a barbeque? What colour? What size? What shape? Gas? Electric? Charcoal? Retro? Traditional? Big? Small? Where will it all end? Well, as with Nanos, with people all crowded round one murmering "Nice." And feeling nothing but empty and futile envy. But the drive for an almost solipsistic individualism pushes on. Not so much about Keeping Up With The Joneses these days as Stuff The Joneses Look At What I've Got.

Let me share a secret with you. Barbeques are not cool. Fires are cool. We had one last week and melted a camping saucepan full of chocolate by balancing it precariously on a plank. Then when the plank caught fire we somehow retrieved the saucepan from the middle of the embers and dipped strawberries into deliciously runny gooey sauce. Made entirely of chocolate buttons. And fire.

And please don't tell me about my carbon footprint. We had enough sooty ones all the way up the stairs to bed to remind me about that. It was a great gathering of like-minded pyros though. My son loves telling his friends "We're having a fire." And so do I. It has a certain frisson these days that "We're having a barbeque!" just doesn't somehow. And I don't think kids look quite as sparky-eyed after a barbeque as they do after a Boy Scouting meets Lord of the Flies escapade in my back garden. Yes, it can be quite anarchic. And we get to be very messy indeed.

What Price Happiness?

Okay so we’re all hard up these days. Even the rich are noticing that food costs more. Gordon Brown is stacking up a raft of tax breaks to help them out. Isn't that nice of him? I'm sure the 10 pence tax band casualties will be thrilled.

Some rich people are even forsaking Waitrose for less salubrious aisles.

I shop at Iceland, and for two reasons. It’s cheap and it’s the nearest supermarket for my pregnant (did I tell you she’s pregnant?) PA. She herself shops at Iceland because she has five and a half kids to feed. She also likes their ‘You buy it, we’ll deliver it’ policy. Ideal for those who don’t trust supermarket staff to select their goods for them but still want it brought to their door. Plus carting home as much shopping as she gets through must be exhausting.

A lot of Iceland’s stuff is fine. Why pay more for store cupboard staples? What bugs me though is the distinct absence of what a friend and I have christened ‘happy chickens’ (and yes I fully expect vegetarians to find this most unfunny) and the other little perks that keep your spirits up during a credit crunch like, oh I don’t know, bags of rocket and spinach salad and red onions and Green and Black’s chocolate.

But as Sainsbury’s online just makes me spend more than my budget I tend to stick with Iceland and give my PA £20-£30 cash a week to see what she can get. She’s very creative and we eat well.

But sometimes I get fed up with budget food. So I tried an experiment today. Is it possible to make your own homemade luxury items and offset the blandness of it all without breaking the bank?

I started by totting up my crumpet consumption as it’s currently my main comfort food. I realise that when feeling particularly miserable I can get through perhaps three packets a week. Now, Warbuton’s crumpets are 67 pence for a pack of six. I consider this to be a cheap bedtime snack. And so in a bad week I spend £2.01 on cheering myself up.

Cheap but a bit samey. Plus my son hates crumpets. And they are not in the same league as chocolate.

I wasn’t going to go to Sainsbury’s today really I wasn’t, but the little voice whispering ‘chocolate brownies’ just wouldn’t go away. Then my son applied some devastating logic to my argument that it was tipping down with rain. Looking out of the window and examining the evidence he said: “There’s a lot of it, but it is quite small.”

So off I went on my increasingly clanky scooter in search of pecan nuts and organic chocolate. My son chose to stay indoors and draw cartoons. Obviously the rain wasn’t ‘small’ enough to convince him to accompany me, but the promise of chocolate brownies was enough for me to go out in it.

For the quantities in Nigel Slater’s brownie recipe, I spent 66 pence on free range eggs, £2.66 on Green and Black’s chocolate, £1.23 on unsalted butter (unheard of in Iceland) and 56 pence on pecan nuts. Yes, Nigel, pecan nuts. I don’t hold with his theory that nuts interfere with the purity of a good chocolate brownie. Nuts are essential in my book. The remaining ingredients, caster sugar, flour, baking powder and cocoa powder we had at home, and amounted to another 80 pence at Sainsbury’s prices.

That’s £5.91 for a batch of 16 brownies which comes in at 36 pence a brownie. Sainsbury’s Taste the Difference chocolate brownies work out at £5.57 for 16. Oh dear. But I bet they aren’t as nice as the ones we made. And no way would they have the top quality ingredients we used. Anyway (do you detect an argument crumbling as fast as a chocolate brownie? Have you even read this far?) you cannot possibly eat more than two brownies a day as they are so rich. I frequently however, eat two crumpets a day and that costs me 22 pence. Two brownies a day is, erm, 72 pence. Which is five pence more than a whole pack of six crumpets. Oh dear oh dear.

I set out to demonstrate that home-baked goodies are a cost effective way of enjoying a taste of luxury in these hard times of ours. I failed.

Or did I? What if the Waitrose exiles become so depressed at their new diet of broken biscuits and factory chickens that they blow £5.91 on a bottle of wine? It could well happen. But wine gives you a hangover. Chocolate brownies just make you go all warm and smiley inside. They boost Serotonin levels, sharpen brains affected by cognitive disorders, and homemade ones contain no additives. They are completely organic. As healthy as an unhealthy snack could possibly be.

My conclusion? Are you still reading? Nuts to Nigel Slater and who gives a crap about the credit crunch? Chocolate brownie anyone? Mmmmmm.

These Days

I surprise myself with joy. And feel more joyful at the surprise.

I ebb and flow. Eyes open. Eyes shut.

I move with caution. I move with abandon. I can be reckless without you even noticing.

I no longer ask "Why?" but "Why not?"

I know that I am alive. My heart bursts at the smallest thing.

I create.

I nurture.

I feel.

These days.

This is my belated post for ME/CFS Awareness Day, which was on Monday. I did know, but somehow it didn't happen on the day. So is it better to let it pass, or to post late? The latter, I feel. I've read some moving posts today, and they inspired me to squeeze a few words out myself. Rachelcreative has an archive of posts here

Telly Savalas Digs Birmingham

This had me in tears of laughter. I feel a traitor to the city my father was born in, but take a look at what the BBC has uncovered



I confess I felt a twinge of nostalgia at seeing the concrete monstrosity that was the Bullring market. The church of St Martin's was famous for being blackened by traffic fumes. These days, after a multi-million pound facelift the shopping centre is still a concrete monstrosity, just a 21st century one, but the church is frankly much better for a clean.
The pubs Telly speaks of in the film have largely all gone. The Ship Ashore. The Barrel Organ. The Hummingbird nightclub. The West End Bar. Sinatras. The Pen and Wig. Sticky carpets and linoleum floors have been replaced by bland laminate and chrome. Is Birmingham any richer for this proliferation of chain pubs and themed bars? No. Grubby boozers were where I did my growing up, fuelled by Purple Nasties (a Goth drink containing cider, Pernod and blackcurrant) and Vodka and orange (squash). And how I miss those cesspits.

The thing is, Birmingham was doing alright until it tried to pretend to be anything but ugly. The film says it all. In the glory days of the motor city, it seemed like a good idea to hire Kojak to take a voiceover ride with the city's cops around the maze of Spaghetti Junction and the dangerous underpasses of old. I did smile to myself at the realisation that in the 70s the police were running 'one of the most specialised traffic control units in the world'...because the city was in a stranglehold of its own making. "Birmingham's roads are revolutionary," Telly proclaims. Bloody dangerous more like.

And with that danger came a certain frisson. I could frequently be found as a teenage punk Goth creation staggering about paralytic in dingy underpasses near the shitholes my father would come and pluck me from before midnight. Pumpkin time, I used to call it.

"There's a sophisticated shopping centre over New Street rail terminal," Telly informs the delighted 70s suburbanites ooh just itching to get on the next train to Brum.

With some sticky-on bits of 80s plastic fascia The Pallasades looks so much better than it did in the 70s. And the shops are... well, it's not Knightsbridge as that gruff old henchman off The Apprentice observed this week. The ramp leading up to the shopping centre was where many of us did our courting. "Meet you at McDonald's". "Which one?" (there were three in Birmingham city centre, three! Oh the excitement). "The one on the ramp." It was always the one on the ramp. The one above the public toilet where none of us dared to venture for fear of being raped.

Meanwhile Telly is back in the embrace of 70s optimism: "I walked on the walkways and sat on the seats and admired the spacious traffic-free pedestrian precincts." Telly, if you were walking down Union Street, how come we didn't see you walking the walk? And why do you sound like you're reading from a Marketing Birmingham brochure? Talking the talk more like. Not that they had Marketing Birmingham in those days. Oh no, that horror was to come much later in the 90s, when Birmingham really did lose the plot.

And why? Because this was indeed a city built on the manufacturing industry - Britain's 'motor city'. And with the collapse of industry came the collapse of Birmingham's identity. There is an impressive financial quarter springing up in the district where I used to work. Impressive if you like hemmed in, frenentic and ant-like city striving. Now it's left to focus groups and marketing non-entities to recycle ill-conceived ideas of just how to attract the mythical band of tourists that frankly will never, ever materialise.

Unless you love shopping. In which case the new monstrous carbunkle that is the Bullring is most definitely for you. As Trinny and Susannah recently exclaimed, probably in surprise: "Birmingham! You've got everything!" And in that single, vacuous statement came the realisation that Birmingham, you've got nothing. Not if you are now built on statements like that.

Quick Post

How do people feel about a book of BADD posts? It can be done with the full involvement of anyone who posted and wants to be part of a book that brings together a truly great event.

There are two main reasons behind this, and I really don't want to let it fizzle out. The main one is that I know I for one would pick up a book more often than search around the web specifically for BADD posts. That's impairment specific to me, and kind of ironic given that much of my support network is online. But I also have this feeling that a book would prove a valuable asset to anyone interested in, researching or working in the disability arena. It could be a personal or professional interest, or both.

The second reason really is impairment specific. I would dearly like to read BADD posts in bed, and feel I cannot be alone (in wanting to read BADD posts in bed that is, not being alone in bed you understand, which actually I very much prefer - more room and an absence of irritating presences, like crumbs and...oh, you know, other irritating presences).

So, to recap. I think embarking on a book is a big but shared excitement and anyone who feels they can help could offer to help with proofreading and editing. A small team would be great as we could work out how many posts are involved and perhaps in the first instance divide them up. Then we'd bring them all together again and see what we've got. There's 164 comments over at Diary of a Goldfish, which gives a fair idea of the scale of BADD this year.


Update: Crucial information I left out: The vehicle for producing the book would be lulu.com which is a self-publishing site where you buy books at the cost of production plus postage. We'd submit posts once we'd got them all together and ready, and the book would be produced very quickly. That's the easy bit.

So I wonder whether Goldfish, when she is less wiped out than at present, would be willing to invite people to say "I'm in" over at hers. I don't feel I can do it here as I'm only really here to waffle on about how enthused I feel about getting a book off the ground. And I'm happy to keep waffling because I really want to help get this going. And Goldfish, if you remain wiped out for quite some time, all that's needed is just the initial "Who's Interested?" question asking. We can take it from there and a job shared is a job halved after all. Though I'm hoping more than two will be able to look through some posts. Five or ten would be great!

But the first thing to establish is who is interested. Then how many entries we're looking at. Then who is able to help organise the content. End of waffle.

A Little Further And A Tentative Suggestion

I haven't been able to stick to my intention of getting around a lot of Blogging Against Disablism posts in a very little time, but I'm glad that Lady Bracknell and others have done so.

It's great to be able to share the little I have read, but to be honest a huge relief and pleasure to follow my own suggestion and make discoveries via other people's recommendations. This is particularly useful if you don't have the stamina for long internet sessions. I just didn't envisage needing to take up the suggestion myself. Quite why, I don't know given my condition. I was thinking more of Goldfish having to steer everyone around what has become her truly huge baby. See? I'm clearly not with it, suggesting a Goldfish steers people around a huge baby. If someone had told me I'd be typing that, ooh, threeish years ago, I'd have said: "Are you in here too, or just visiting?"

Um. Well, thanks to Her Ladyship who has been whizzing around like a very whizzy thing indeed! These posts jumped out at me today, then I just completely ran out of steam. It's been a no spoons sort of week. At my pace, it'll be a long time before I've read everything but I will keep reading, because it's so heartening and enriching (to pluck just two words out of many I could use to attempt to capture BADD 2008). Here's what I read today:

Chanelle and Tristan on the fight for inclusion

Rudy on dealing with staring

Rachelcreative on invisible disability

A powerful and astute observation about when virtual worlds don't collide, from Veralidaine

Yanub saying "It's everyone else who is weird".

Jemma writing about rejection from employers, and how disability studies should be on the curriculum. Yes, totally!

And Elizabeth, who just blew me away with this


I want a book printed containing every single post. There are two reasons for this. One is that Goldfish's efforts to unite should, I feel, be united in print.

But doesn't that defeat the object of blogging, I hear people cry? No. We've blogged. Now why not take it further? There are some really powerful pieces this year. I'm not saying that blogging isn't enough. But I am saying that there are other platforms for these words. And a book would be just wonderful, in my book anyway. Certainly better than newspapers or magazines.

And if I had such a book, I could read it in bed. This is my reason number two. Oh get a laptop!
I can't. But I want to come back to this day again and again. The very success of this hugely successful event warrants a book, for reference, for everyone. I'm sure many will disagree. But I'd still like a book. Anyone else?

BADD - A Little Goes a Long Way

Great things are going on over at BADD Here are some of the first posts I have managed to read. There are many more to come over the next few days, and I'm sure the debates will continue around here. Yes, you people have got more than just me thinking.

Wheelchair Dancer is at her finest with a blast at something both ugly and deplorable.

Lady Bracknell's Editor provokes feelings of disquiet and dismay as she demands the minutes stand and be counted...

Dave Hingsburger always makes me think, and this is no exception. I'm still thinking.

Cusp tells the truth of the matter.

David at Growing Up With a Disability writes about not being seen.

Wheelie Catholic gets me thinking about the people who reinforce negative outlooks...

And a late entrant (only because I have to stop now and get some sleep) An Unreliable Witness, being actually quite reliable I find.

I was joined earlier in the evening by my son who became curious at all this computer activity. He read a little then we got on with the bedtime routine. Big issues are usually broached by him with a circumspect, often random question. It's how I know something major is up for discussion. And it was when we were settling down for the night with warm milk that he asked:

"What would you like to be in the Guiness Book of Records for?"
"For speaking the most truths in a lifetime," was my reply.

Then, because he's read some of the posts tonight, and especially liked David's he was asking why for BADD we didn't all write our own newspaper or magazine. He asked this because I used to write for newspapers and magazines.

"Why don't you all get together to be in a newspaper?" he asked.

I didn't tell him about the Guardian (see WCD above). I just didn't have the words for a child where The Guardian is concerned. I did tell him that newspapers house some of the most entrenched disablists out there. And why would we as free-thinking disabled bloggers want to bother seeking recognition or approval from newspapers that send out lies and bad messages about people with disabilities every day? It's the non-disabled readers who have their own prejudices validated over breakfast every morning.

Writing for the press has always seemed cool to my son. Until recently. Now there is a certain amount of conflict. His father still has a cool job. His mother doesn't, but realises she actually never did. I feel privileged through my experience of disability to be able to tell him the truth. To ask him to seek out the truth and reject all the misrepresentation.

He went on to consider other areas where the portrayal of people with disabilities is very important. "Why there aren't more disabled actors like in Tracey Beaker?" he asked. And so we talked about how it would be good to see actors with disabilities playing roles that are non-disability related. Where the disability is not central to the plot.

I hope in future years he will write his own post for BADD. He certainly has a keen grasp on what we're up against for one so young. He is finding his own voice in all of this.

Look Back In Anger

Yes, I am angry. Now what do I do?

I am writing about anger for BADD because I know it’s an emotion people know very well when living with a disability. And when you carry around internalised anger it can be very damaging. This I know myself as I am profoundly damaged, physically and mentally. And if my therapist has his way, anger will prove to be at the root of all my ills, we will talk out my anger and I will be so much better.

Now considering I am struggling with a neurological condition that has left me disabled, I wonder about this desired outcome of his. It is imbued with hope, but is it entirely realistic?

Anger is so common in disability circles. But can it really be said to cause, exacerbate or prolong illness? Certainly if you live in isolation and are starved of human contact, anger can become a problem. It is tied up with stress, unalleviated stress, stress that could be eased by human touch alone. But not everyone has regular hugs. And some of us can be angry in an indiscriminate, irrational way if under too much strain. We can also be angry at society in a very specific ‘social model’ savvy way. We can be angry with family, friends, ourselves even, for getting ill in the first place.

So how do you release anger? Really, I want to know. Without the physical release of exercise all I have is relaxation methods and they serve to deflect rather than expel anger from my body as exercise used to do.

And I say used to because I’ve been angry for a very long time. My anger pre-dates my disability. And some would have it that such large amounts of anger contributed to the weakening of my body to the extent that I became ill. Back on the couch it’s all to do with unreliable parental figures, an unstable wider family, abuse, neglect, my own perceived failings…blah.

So yes, I have a lot of anger. Firstly the boxed and very hurtful memories from my distant past and the more recent disability-related experiences. There’s the lack of comprehension, understanding, time or empathy from fellow human beings. The total shambles that was my medical care for a long time. Then the breakdown of my ten-year relationship due to an utter denial (on both sides for a while) of what was happening to my body and mind. Now I’m moving into acceptance. He still just cannot comprehend. A bloody great stair lift, installed yesterday at my home, is irrefutable evidence that I am indeed disabled.

And people up at school have got used to me on a scooter. I have got used to me on a scooter. But the woman I barely know who today decided to share her experience of a devastating but temporary brain illness caused the anger to surface yet again. She told me just how poorly she’d been and I really was shocked and sympathetic. Then she ended with a breezy “Well, everyone says I’m back to my old self now, which is what I wanted.” And I was left trundling off on my scooter muttering how glad I was for her, with her bright and breezy “Stay positive” ringing in my ears. Like if I stay positive I too will be cured. She didn't mean to leave me smarting. It was my reaction. She meant well.

I want to stay positive. And I work very hard to ensure that both my son and I tackle the things that make me angry and him confused. But I don’t want to be consumed by anger. So I think it needs to be channelled. To go where it is needed. Into campaigning for better disability awareness in schools – something I feel very strongly about. Into examining how the perceived failings of family and friends, ex-partners and in-laws perhaps need a reappraisal. Was it their fault they all went into denial? That denial turned into rejection? That rejection worsened my anger? That my anger made me even less approachable?

Where does it all stop? Or perhaps, where does it all start?