The up side about doing a PhD is:
Dear All – Dad has taken a bad turn and I will be flying over to be with him at the weekend. I don’t want to write about it this time. Instead I have distracted myself by doing a piece on the BBC Late night radio show I ended up doing a cameo on. T x
Disclaimer: This is my recollection of the show last Friday. It is written without recourse to transcripts or copies and has been flamboyantly reworked. I may have got it entirely wrong. Just saying…
It’s a funny thing but this time last week I was in South Africa in Pretoria East Hospital sitting with my Dad who was attached to a remarkably noisy array of machines some of which blinked, some gurgled and some which went ‘ding’ like the number 57 bus to Highbury circa 1970.
I suppose ‘funny’ isn’t the right word. There is nothing funny about a father who has VERY nearly died from complications arising from serious infection and multiple myeloma and who is in ICU trying …although so weak he can barely raise his head from the pillow …to signal through his oxygen tube that he wants someone to sneak him a roast beef sandwich past the ward sister. I mean ‘funny’ in the sense that one can be in Cambridge, sighing and huffing at a computer one day and the next in Sub Saharan Africa in an isolation unit without ever actually having to do any walking. Train, airport, plane, airport, hospital. Surreal.
It hadn’t started particularly well. I had put my hair up in a Chinese style chignon but it was TOOO tight and although I looked hugely perky it was because I couldn’t really shut my eyes. Due to that (and also the fact that with visual impairment like mine I can’t always do the blink reflex in time) I then managed to stick the thick wool collar of my coat into my eyeball as I was getting ready to catch the train. This meant that by the time I got to the station I had an almighty headache and a sore eye but it didn’t matter as my hair was too tight to allow me to scowl.
I was in London to attend a series of talks called ‘The Representation of Disabled People in an Age of Austerity’. It was fascinating if devastating stuff. Professor Nick Watson of the Strathclyde Centre for Disability Research and Allen Sutherland of the Edward Lear Foundation fed back from a study commissioned by Inclusive London in which they had analysed all articles mentioning disability in a series of newspapers over two time blocks in 2004/5 and 2010/11. Articles were scanned for emphasis, political angle, language, and so forth.
The clocks have gone back and BAM just like that I am a hedgehog again and all I want to do is hibernate. This year in particular I have really noticed the brain change. Grace and I usually get up at 6ish (very ‘ish’!) She eats and slopes back to bed and I do my chanting meditation and think about ‘stuff’ and what to write and how plan my day. But since the clocks, I am dopey and dizzy and can’t surface (and my eyes have been a shambles of oedema and ache.) I know it isn’t just psychosomatic, although of course there will be an element of that. When darkness plonks itself down like an unwelcome wedding guest at 4.00pm in the blinking afternoon I turn into a middle-aged, fairy tale princess (possibly more ogre) trapped in my flat trying to spin flax into gold on my computer.
It is a gorgeous day…
…for a protest march. High blue hanging tapestry of sky with crisp, cold air just enough to make your breath mist as you shout obscenities at the government. Not that we would of course. Most of us haven’t go that much breath to waste, confined as some of us are in wheelchairs or strapped into various bits of engineered exoskeleton, hanging on to guide dog harnesses or canes or friends or a combination thereof. For many of us just moving forward makes us gasp for air.
The police mill around looking sheepish. ‘They are just here in case the rowdy element kick off,’ I say to my friend C as she surveys the frail looking folk in their assistance scooters. ‘That guy in particular,’ I whisper, pointing to a dummy in a wheelchair ( noooo… I am NOT doing a Ricky Gervais. It is an actual dummy) with a David Cameron mask on. Oddly, as people pass it they make little signs with their hands that look suspiciously like ‘warding off devil’ signs…if a ‘warding off devil’ sign involves an extended middle finger.
The protest march kicks off
The lovely folk in the lead make us practice chanting before we set off. For 99% of us, shouting for anything is an entirely new experience. Most people with an impairment or a chronic illness are quietly stoic. The older generation in particular often settle into that ‘Blitz’ mentality of ‘keeping calm and carrying on.’ But now keeping calm and carrying on might kill you. Certainly it will lead to further exclusion and greater poverty. It is with a shocking sadness that we are rallying, accused of ‘scrounging’ of ‘leaching off the state’ and ignored almost entirely by a society warped by the recession.
‘Shout louder!’ we are told and we do, until our timidity disintegrates and we are ready.
The march route is short and takes us from the central park though a corner of the cathedral forum, with the wonderful library to the left and back to the park again. We chant lustily at about a dozen tourists, several irritated shoppers and a murder of crows that are looking rather too intensely at a few of the limping stragglers in our group.
What do we want?
When do we want them?
We try to shout loudly enough to disturb the rest of Norwich city but most of them have disappeared off to the Top Gear Road Show that is blasting pop tunes from behind the shopping centre. Ironically, there is probably more engineering technology in amongst the blinged up wheelchairs and motorised scooters in out raggedy group, but, undefeated we shuffle and skip, roll and scramble back to the park and listen to the speakers tell us not to give up. To fight on for compassion and equality. To fight on for fairness.
‘I am blind, my husband in visually impaired. I have two visually impaired children,’ says B. ‘I work hard and I want my kids to have every opportunity. Last year, we had a special bus service and I paid £250 getting the kids to school. Now the service has been cut and we have to find over £2000 a year. How?’
Her son stands up. ‘I want to go to university. The fees are so high now that most kids are having problems finding the basics. Given I would also need additional equipment, transport and access finance I am immediately excluded.’
Another woman with cerebral palsy, asthma and learning difficulties says her care has been cut from 10 to 3 hours a week. She still needs the care though.’
Other people talk about being excluded, passed over, dismissed, and judged useless. The changes in benefits, cuts to services, rescinding of the basic mobility component of the DLA means that more and more of us are unable to get out of the door, let alone to work. There are no good stories. Only one MEP has sent a message of support. In the distance the duff duff bass sound from the Top Gear Road Show wafts over briefly and disappears like a bad smell.
‘Was it a good march?’ my friend asks when I get back.
‘It was a beautiful day,’ I must admit. ‘But no. No, there was nothing good about such a march.’
Only a few generations ago, in another recession, in another part of the world, people with disabilities and illness were called parasites too by a government propaganda machine. No one stood up and shouted. The government of the time felt vindicated and their second phase involved wide scale sterilisation. Again, very few people in the society of the time reacted. The government smiled and ticked the next box and we were the first to be exterminated. We, the disabled, were the canary in the coal mine. We still are.
Hope you don’t mind but I have copied the information from the RNIB website about the planned march next week. I went on the first one in London in April and I think it is very important that everyone is aware that the government ‘changes’ to disability benefits are going to directly affect the most vulnerable people in society. Its grotesque especially in the way is is all being done ‘undar the radar’. You may think it doesn’t affect you but it will in the long run.
Please, if you are near any of the places listed below, do turn up and show compassionate support. I’ll be at the Norwich do with the groovy hound!
If you are concerned that you or someone you know may be affected by planned benefits changes contained in the Welfare Reform Bill and by cuts to services locally, there is an action you can take in nine days’ time.
Please join us at a Hardest Hit event in your region on 22 October to make your voice heard. You will be supporting other disabled people, people with long term conditions, their friends and family who are speaking out about the impact of planned cuts as the Welfare Reform Bill makes its way through Parliament.
RNIB is working with over 40 organisations to call for significant amendments to the Bill. Key concerns for blind and partially sighted people include:
Changes to contributory Employment and Support Allowance – including proposals for a 12 month time limit on benefits for people who lose their sight (and their job).
Changes to Disability Living Allowance – including proposals to end automatic entitlement to the benefit that replaces DLA, including the higher rate mobility component for people who are deafblind, or severely visually impaired.
We cannot underestimate the impact these proposed changes will have on blind and partially sighted people, and everyone living with a disability. Please join us at one of the 12 events taking place across the UK to send a clear message to Government – you are hitting disabled people and their families the hardest: stop unfair welfare cuts.
•Belfast: Debate at the Radison Blu Hotel in Belfast on the Welfare Reform Bill’s impact on disabled people’s freedom and independence. Please note the Belfast event is on 20 October and starts at 1.30pm. Visit the Hardest Hit website to sign up to attend.
•Birmingham: Rally in Victoria Square, in the city centre on 22 October. Assemble from noon and the rally will begin at 12.30pm.
•Brighton: Rally at Jubilee Square, Jubilee Street, Brighton on 22 October. Gather from 11am with speeches between 11.30 – 12.30pm.
•Bristol: March on 22 October beginning on College Green, outside the Council House, at the bottom of Park Street, from 12 noon – 1.00pm. Return to College Green for a rally from 1.00pm – 2.00pm.
•Cardiff: March and rally on 22 October. Assemble from 12.30 in the car park outside City Hall, Cathays Park. Speeches from 1.00, followed by a march and returning to City Hall for a rally at 2.00pm.
•Edinburgh: Rally on 22 October. Assemble from 11.00am at the Ross Bandstand in Princes Street Gardens in Central Edinburgh. Rally starts at 12 noon.
•Leeds: Assemble on 22 October at Victoria Gardens, outside Leeds Art Gallery on Headrow, from 12.30pm for march through main shopping areas and returning to Headrow. Rally from 2.00 – 2.30pm.
•London: Rally on 22 October outside London’s iconic GLA building (City Hall), Queen’s Walk. Meeting from 11.00am with speeches from 11.30am.
•Manchester: Rally on 22 October between 2.00pm and 3.00pm at Albert Square, outside Manchester Town Hall.
•Newcastle: March and rally on 22 October. The march will leave Bigg Market at10.30am, walking to the Monument for rally at 11.30am. Ends at 12.30pm.
•Norwich: March and rally on 22 October. Assemble from 11.30am at Chaplefield Gardens in the centre of Norwich. March starts at noon and returns to Chaplefield Gardens for the rally at 1.00pm.
•Nottingham: Rally on 22 October. The rally is taking place in Old Market Square, just outside Nottingham Council House from 12.30pm to 13.30pm.
More information about individual events and contact details can be found on the Hardest Hit website. If you want to support the campaign but you are unable to attend an event, the Hardest Hit website also has a list of suggested actions you can take.http://thehardesthit.wordpress.com/
Right, that’s it. I have HAD it with nighties. In fact all bloody silly night dresses of all forms; wispy, silky, clinging, spaghetti-strapped, long cotton with pretty embroidery, delicate, immensely irritating bloody nighties. No more! They are just not safe night wear.
You see a couple of nights ago, Grace and I were woken by suspicious crashing noises coming from the garden. Grace leaps up and dashes for the back door with me on her tail, desperately flicking on all the lights in the flat.
Must have been one hell of a scary sight because silence now floods the garden. I am still standing clinging to the door, trying in vain to retain some dignity, when Grace trots back in. She pauses momentarily raising eyebrows at me then shakes her head as if to say ‘you just can’t get the staff these days’, and lopes off to bed.
Pyjamas are the way forward. In fact, due to having a terrible head cold the other weekend, I was too befuddled to pack a bag correctly and hence arrived to give an after dinner speech without the correct trousers (Gromit!) I ended up standing in front of 140 people to give a talk in my pyjama bottoms. Luckily they weren’t the fluffy ones or the ones with little love hearts on the arse but just saying. I couldn’t have done THAT in a nightie!
Oddly enough he wasn’t tempted but my point is that never nighties. Always pyjamas. Especially if one is in a sinking ship. Remember your first life saving instruction? Tie knots in your pj bottoms and blow them into a life vest (or life raft depending on the size of your pj’s of course… )
Whatever your night wear, thank you for patiently waiting for me to get my blog brain back in gear. I aim to keep my posts shorter but more regular from now on. After all we have a hell of a lot to catch up on! How have you all been?