And she's back! Did ya miss me?

 

Corsham Court. I work from here! Really!

 

The up side about doing a PhD is:

·      Telling people you are doing a PhD

·      Going into Corsham Court to my lovely little office to do said PhD

·      Researching and thinking about PhD

The down side about doing a PhD is

·      Actually  DOING the PhD.

Holy Swotting Hell Hermione!  You may think you have a cracking idea but it would seem that a great many people have already had a version of your original idea and have written vastly on the subject and often in the language know as ‘Freakouttheignoramus’.   As a ‘for instance’ look at this impenetrable and frankly completely baffling bit of academic swank by Griselda Pollox, a feminist scholar who should know better.

 ‘The matrixial gaze emerges by a simultaneous reversal of with-in and with-out (and does not represent the eternal inside), by a transgression of borderlinks manifested in the contact with-in/-out and art work by a transcendence of the subject–object interval which is not a fusion, since it is based on a-priori shareability in difference..’

What the hell, Griselda? Manifest this...!

It doesn’t help that a lot of the articles and books I am sourcing are in a difficult format for me to read. I like to have hard copies still rather than reading from a computer or being read to.  This means all has to be in 20 font and arial and there is a hell of a lot of time taken up with just making things accessible and printing. The university, Bath Spa, and my supervisor have been wonderful and as I am the only blind in the village this is all new to all of us. I am trying Dragon Dictate and will eventually have another look at Supernova and Jaws (screen readers). I also have, this year, study support in the graceful, wise and very, patient guise of Jennyfrommyblock.  (Turns out she is my neighbour)  She gets the near impossible job of trying to help me ‘organise’ myself.  Apparently there is something called..’filing’....? Who knew?

And what I hear you cry am I actually doing my PhD on?  It is a damn good question.... As it’s a creative writing PhD the main bulk of my time is to be spent writing a fiction novel.  Mine is an experimental thriller set in a dystopian UK.  More on that another time.

The critical component of the PhD, which should both inform and influence the novel is called:  Blurring the Image; a comparative study of the representation of visually impaired women and children within selected literary genres.  Good eh?  Took me three months to come up with the title. It’s tough being a student.

But I am not really complaining I LOVE this stuff!  I am having fun. And I love this crazy small Corsham town as does Grace who seems to have her own celebrity following.  So much to tell....but as this is the first post in a very long time and all that, I will keep it short and more shall follow! Hope you are all still out there!  Let me know,

Tanvi x

 

 

My Post Doc

Two months ago Dad died. It was the 17th March 2012 at 3pm, Pretoria time almost exactly. He was buried in Lusaka, Zambia on the following Thursday and his memorial was held at the UNZA chapel on the Friday. This is the first thing I have written, apart from unreadable journals and my speech for the memorial since.

I love..loved...him with all my heart and right now the shock of it all is beginning to wear off and the acid grief is giving me constant belly ache. Ho hum...  He was my Dad, my friend...we made each other laugh and I think we made each other proud.  It was a privlilege to be there when he headed off and an honour to see the courage and kindness of my siblings, Rachma, Zoe and Ben, my Mum Ruth, my aunt, Jackie, his dear cousin Irving and Dad's great friends and colleagues in Lusaka; Adam, SJ, Vernon, Guy, Charlotte, Caroline, Grant, Mwitchi, Patricia, Wille,  Luo, Simon, Cynthia, Alan, Shenda, Mwangala, all the Team Hospice Chilanga. the Travelling Rabbi, Michael Galaun, Seb and all the wonderful folk, to many to mention, that helped with his burial and the memorial  Thank you so much.
Next week I move to Wiltshire. Life's funny that way.
Long Life! Take care and if you love someone give them a bloody great hug and tell 'em so. 

Phone In Freak Shows on the BBC.

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...

Last week the policeman who had been shot and blinded by the killer Raoul Moat hanged himself. For two years he had been struggling with the trauma and pain of the attack which had conspired with his sudden blindness to form a dark riptide of anxiety, fear and self hatred that eventually dragged him under.

PC David Rathband

24 hours later it’s Friday night and I am waiting on the end of a phone line; a guest on Radio 5 Live’s late night Steve Nolan show.  I and a couple of others have been invited to discuss the impact of visual impairment and coping strategies..or at least that is what I had thought but then I had never listened to the show before....... 

Previous to the ‘blind’ bit is a discussion about the singer Englebert Humperdink and his chances for the Eurovision Song Contest.

  ‘Ooohhh I love this I love this!’ coos Mr. Nolan, the erudite host, as the song ‘Please Release Me!’ circa 1970 something blares over the airways.  ‘This is the best stuff I have ever heard!’

He means it as well which for some reason makes me a teensy bit anxious about his grip on contemporary culture. But there was no time to dwell on it...news comes next, then there is a short introduction to the tragedy of PC David Rathband and boom our slot is underway.

In preparation for the show I have been reading some of Rathband’s previous interviews, thinking about what might have helped him, what interventions could have been taken if any, looking at independent living and the recent government changes to the welfare bill  I have a couple of pages of notes to hand although I still don’t feel prepared.  There is so much to say...

The very first caller is a silken voiced, middle aged man, Dr. K, who had been working as a cardiologist when he was attacked and blinded with acid fourteen years ago.  Blimey! I think. This is exactly the right man to talk this through. Go Dr. K!

Dr. K however is still, fourteen year after his attack, brooding and depressed.  He begins to list all the professional bodies that have let him down, turned their backs on him over the years.  They wouldn’t let him practise medicine.  They had no respect for him as a doctor. Next he moves onto how his friends have left him one by one.  No colleague stood by him.  Now people only come and sit with him for a minute and then move off..he knows in his heart that they don’t want to waste time with a blind man.

Dr K is exhibiting much of the depression and paranoia that David Rathband hinted at in his various interviews. Only it seems to me that there is something more - a hardened, flatter, peevishness; an ‘it's not fair’ on a constant loop that fourteen years have done nothing to diminish or transform.  I wonder how his wife is coping.

Mr. Nolan is rapt.  ‘David Rathband committed suicide..do you ever think of taking your own life K?’ he asks gently.  I can hear his pale cheeks flushing from excitement from where I sit clutching the phone in horror. Dr K pauses but then tentatively agrees....anyone faced with this would feel the same he is saying.

There is a brief pause before the host passes judgement. ‘You are the most inspirational man I have ever talked to on this show!’ he declares. ‘So many people will want to talk to you K! Please stay on the line.’

We all stay on the line.  My palm is now damp with sweat where I grip the handset.  

After more news they read several messages from people saying how inspirational Dr K is. Mr. Nolan obviously knows his audience. ‘You are amazing!’  ‘That is the most incredible story I have ever heard’. Texts and emails come thick and fast.

Eventually they introduce D who, not only lost her sight suddenly due to meningitis in her 20s, but moved from South Africa to UK on her own and began life all over again as a blind woman. However Mr. Nolan doesn’t ask her about this.  Mr Nolan gets this remarkable woman on the line and asks her what she thinks ....about Dr K.  ‘Isn’t he AMAZING?’ he enthuses.

‘Eerrr.,’ .D improvises and tries talking about her key decision to never to let things get her down no matter what .. but she is cut off by Dr K. ‘That’s all very well for you he says peevishly... you were younger when it happened.’

Actually Dr K is only 54 and, if we take the 14 years into consideration, was only 40 years old at the time he lost his sight.  But D is not asked to respond because more people are calling in to tell Dr K what an inspiration he is. She does not come back on the line.

At some point as I am grinding my teeth a young man, blind from birth, gets a chance to try and pep Dr K up. ‘Nothing has ever stopped me,’ he says but then makes the mistake of quipping that he can’t get a girlfriend. And he is off air.

Another woman, an innovator and campaigner who has  also assimilated, taken on, transformed her blindness gets a few seconds to tell everyone what she thinks ......of Dr K 

 ‘Well you mention you can’t work but you still have all the skills?  How about lecturing?’ She asks very politely and that brings another weary finger pointing tirade from Dr K about how he tried years ago but more people turned their backs on him, let him down. Mr. Nolan cuts in to read a few more ‘you are a hero, an inspiration’ messages. The woman gives up.

A producer comes on my phone line at last

‘Ahh miss Bush.. are you still there?’

‘Yes but I don’t think there is anything I can add to this...’

Two minutes..’

‘Really I can’t..’

Gone

I check the clock. It’s nearly midnight. I bite my tongue looking down at all my scribbled notes. Is anyone going to offer Dr K counselling? Is anyone going to actually discuss coping methods –ways to prevent people like Dr K and David Rathband falling into paranoia and topping themselves? That stuff is out of my league but it needs to be covered surely...?

‘You are definitely the most incredible guest we have ever EVER had on this show in all my years as a journalist,’ Mr. Nolan is saying with a slight break of emotion in his voice.  ‘..and we want to bring on now a  Mrs. L Go on Mrs L what do you want to say to Dr  K?’.

A woman’s voice, very posh accent, slightly hysterical, gasping with tears ‘Dr K you are the most incredible man I have ever...ever......well i just ...I can’t’...’  She dissolves into what seem slightly chardonnay induced tears.

Gently Mr Nolan cajoles her ‘Go on Mrs L.  You said you were a widow?  Is that right? ‘

‘Yes,’ gasps Mrs L.  ‘My husband died but now I know I haven’t really faced anything compared to this extraordinary man...’..’

‘And?  Go on, go on..’ Mr Nolan interjects with ghastly sympathy. ‘Do you remember what you wrote in your email?  You are quite far gone with cancer..?’

Once again the woman weeps ‘yes; praising Dr. K for showing her the way.

Sweet Jesus, I think trying to unlock my spasmed fingers from around the phone receiver.  The producer is suddenly speaking in my ear..

‘You’re next. ‘

No no (under my breath I am now singing ‘Please Release Me!’)

‘So now we have a Tanvir on the line,’ comes Mr. Nolan’s nasal tenor. ‘Tanvir what do YOU think about Dr K? ..’

Later on face book I message my brother.  ‘It was the weeping widow.  I say.  With cancer.  You just can’t top that.’

‘Some things shouldn’t be topped,’ says my brother wisely.

What did I say?  Well I remembered that right at the beginning Dr, K had mentioned that it wasn’t fair that he hadn’t been allowed to practice cardiology because ‘I have lost my sight but I still have vision’. So I riffed on this for a mere matter of seconds, about how important that was, how powerful before I was cut off mid sentence my Mr. Nolan saying ‘Sorry about that callers but we have come to the end of a truly remarkable show.’

P.C. Rathband RIP

  

Drip Feeding in February

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.

Dad and me in 'lekker' T-shirts

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.

Dad is still in the hospital as I type although now out of ICU and isolation and in the general ward where his jelly and custard is not swabbed for bacteria before it is allowed to his bedside. He has a long hard rehabilitation ahead of him and there are many questions still to be resolved about his health and next treatment but for the moment he is out of danger (unless dying of boredom is a possibility. He was already bored in the ICU! This is one man who would rather take his drip stand fishing then lie still in a hospital bed. I pity the nurses...)

My brother had flown over a couple of days in advance and seen Dad at his worst. At one point Dad, mid rigor and fever spike, had told Ben, slightly urgently, to take the number of Ambassadors Funeral Company from his phone. This is what my dad calls ‘future planning’ ...although at least he had the number in his phone I ‘spose. So when I arrived my brother, though wonderfully supported by dad’s mate Adam, had already dealt with a whole load of hoo haa. There was a lot more to come. A lot more which I won’t go into now. You will have to wait for the novel.

With aunt looking better!

My aunt joined us and we spent the week going from Jan Marie’s Bed and Breakfast (which I must tell you ALL to stay at...even if it means diverting your trip to the grim old Pretoria. Mr and Mrs Jan and Marie are the most fabulous couple especially if you arrive in confusion, unable to drive, upset and freaked. They picked us all up from airports and dropped us all daily at hospital never asking for a bean. )

I stayed five days. My benefits were suspended for that time and had I stayed longer there would have been complications. What it is to be the Department of Work and Pensions bitch.  Talking of bitches, Grace had to board with our mate Daisy and I, having to resort to my white cane again, was somewhat lopsided without her. But now I am back and my brother is back and this evening my aunt will also fly home leaving Dad to the tender mercies of the nurses and his partner on whom I will not say another word lest it cause the very computer to melt into a smoking bubble of plastic, glass and sparking wiring. Not
Another
Word.

Chipololopolo!!!!!

Oh and ZAMBIA won the Africa Cup of Nations!!!! Won it! It was phenomenal. The whole country is still dancing.

Oh and I got a place to do a PhD at Bath Spa! I don’t have the finance yet but the place is a start! (yes...I too have the ‘forward planning’ gene of my father.) Will tell you more about it all in the next post.

And that’s enough for this month don’t you think. Holy shit.

Fear and Loathing in London

Felt like this!

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 study had been followed up by several focus groups to test general public attitudes and those of people living with chronic illness or a disability.
Here is the link to the article : http://www.inclusionlondon.co.uk/ and I am going to just quote a couple of the major findings from the study here but as you can imagine it was pretty grim stuff.

• These articles are impacting on people’s views and perceptions of disability related benefits. The focus groups all claimed that levels of fraud were much higher than they are in reality, with some suggesting that up to 70% of claimants were fraudulent. Participants justified these claims by reference to articles they had read in newspapers.
• This strength of fraud as a tabloid theme conflicts with the reality of levels of incapacity benefit fraud and focuses public perceptions of responsibility for Incapacity Benefit levels on claimants rather than problems in lack of labour market demand, economic policies or discrimination.

Its actually 0.03%!!

• There has been an increase in the number of articles documenting the claimed ‘burden’ that disabled people are alleged to place on the economy – with some articles even blaming the recession itself on incapacity benefit claimants

This talk was then followed by feedback from a study conducted (and ongoing ‘Hidden In Plain Sight’) commissioned by the Equality and Human Rights Commission on disability related harassment. The young woman presenting (I apologise as did not catch her name) said they had been inundated with information, examples, experiences and more. The report shows undeniably that ‘... harassment is a commonplace experience for disabled people, but a culture of disbelief and systemic institutional failures are preventing it from being tackled effectively.’


The speaker asked us to put up our hands if any of us had experienced harassment due to our disability...and almost every person in the room put up their hand. The woman advocated standing up for ourselves, taking a hard line stance but we all know that it is precisely this kind of engagement which in the current climate of aggressive misery can lead to real trouble. We nodded wearily. http://www.equalityhumanrights.com/legal-and-policy/inquiries-and-assessments/inquiry-into-disability-related-harassment/hidden-in-plain-sight-the-inquiry-final-report/


The last speaker Deborah Williams of Reality Productions, reenergized us with a couple of exercises to ‘create’ the ultimate disabled person from attitudes of current media.


What is a good disabled person?


Quiet! Stoic! Sexless! Grateful! Dead or cured! We yelled. ‘Paraolympians! Ex- Army! Tiny Tim! Blunkett!


And a bad one?


Fraudster! Whiner! Political! Angry! Confrontational! Aggressive! Sexual! Mentally unstable! Heather McCartney! Captain Hook! Hoodies with Attention Deficit Disorder! Err Blunkett again!

It's our life!

This was fun but when we all got up to leave I was glad that speaker had written it all down with a pale pink pen and I couldn’t see all the words littering the white board.

This is not just a game after all....

Getting tight.

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.



However that is enough whining. I don’t yet have to panhandle for food or sleep in a doorway and I am very grateful for that.... just annoyed by the slight feeling of melancholic claustrophobia that the change in season brings.

That and tights. Freakin’ sodding tights. I hate the things. When I was a kid at boarding school the small girls were not allowed to wear tights until they were seniors. At the time I thought this unfair. There we were, the little ones, with our red wind chapped thighs and frosted knees whilst the older girls had thick brown nylon to protect them from the chill. There was a kind of mystical sophistication that we all thought would come as soon as we donned our first pair of Pretty Polly tan tights. But it was all a terrible con

Spiderman having a backwards gusset moment

First of all you spend several minutes holding the tights up in front of your face desperately trying to work out which is the front and which the back because if you don’t get it right you get twisted up like a fish in a net with your gusset on backwards. A backwards gusset was developed as a form of torture during medieval times when everyone wore heavy woollen tights. A backwards gusset is the equivalent of being in the stocks. A backwards gusset means your tights will be too short and rub in awkward and painful places, you will be forced to walk like a duck...and, in cheap tights, you will also spark like a mini Guy Fawkes. Tights pah! Unventilated and sweaty ...and please don’t tell me you haven’t been in a post shower situation with slightly damp skin trying to drag those suckers up? Hell sir! And now its winter and rather than facing the large moth-eaten bag of old tights with their baggy knees and holes in crucial places, some of them still in the balls I made to throw at the wall, I invest in expensive luxury, thigh slimming, ventilated-gusset, designer beauties only to immediately put my fingernails through them as I pull ‘em up. Two pairs already balled and thrown from wall into wastepaper basket.





wot's a 'tights'?



Tights. Nope. Gonna be wearing pyjama bottoms under my dresses from now on.



Canary in the Coalmine.

It is a gorgeous day. 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.

David C

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 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.

The Disabled are Revolting!

‘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?


Equal rights!


When do we want them?


Now!

Cath, me and Tim amongst the rabble1

Every time I shout ‘equal rights!’ I feel emotion rise up my sternum and drum on my heart.

Grace!

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.’

My placard with thanks to Munch.

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.