I am thrilled to share my inclusion in the Shaw Trust Disability Power 100 2024 list as a Grassroots Community Activist!
This recognition as one of the 100 most influential disabled individuals in the UK is an incredible honour. The awards are publicly nominated and judged by an exceptional panel of 25 disabled leaders, including Dr Shani Dhanda, David Clark of Paralympics GB, and Coronation Street actor Cherylee Houston. To have my work acknowledged by such an esteemed group means the world to me.
My Contributions to Disability Advocacy
For years, I’ve worked passionately to challenge perceptions of disability and dismantle stereotypes. My projects span activism, research, creative writing, and the arts, all driven by a vision of creating lasting, positive change.
Today we entered the second stage of the new normal where the adrenaline drops and the realisation that we cannot return home creeps into our consciousness, creating a gravity echo that leads to a deep and alarming torpor. Note has been taken of the warmth and safety of the bed in the morning, the unwillingness to even get into Starry Fleet uniforms; sports bras hang as wilted breastplates from the door handles, sleep-wear is seen at morning roll-call.
The crew require greater support and acknowledgement to survive this stage of the journey. Regular doses of sunlight, clever music and much hugging of Mitzie, the furry crew member, who is immune, thank all the Gods, to this virus.
Commander Mitzie anxious about her crew who wait for release from quarantine.
Communications are still regular -mostly now shouted from 2 metres away from other entities but easy to understand in all languages – ‘How are you doing?’
‘Are you able to get your shopping?’
‘Thank goodness for the sunshine!’ and
‘The queue starts here…”
We are learning new online skills and have discovered ‘zoom’ and ‘google hangouts’ allowing us to connect to Startled Fleet Command and friends and family. Eyes smart with peering at screens.
We are our colleague Ripley, clambering into her space suit and trying not to wake the slumbering monster, whispering ‘…lucky, lucky, lucky…’, under her breath, sweat dripping down her nose, eyes huge. But some of us are not lucky. Won’t be lucky. In Isolation No One Can Hear Your Scream!
Tomorrow we venture out again, aware of how sweet the air is without the fumes; spring sweet. We will see the shapes of people but never get close enough to see their faces. Mitzie, the furry crew member and I will hail them anyway. ‘We come in peace!’
Last Monday I was on the bus trying not to touch anything with my hands-
-which is tricky if you are visually impaired, bus lurching, Mitzie sliding helplessly into the aisle.
Back then, hundreds of long hours ago, when we were still living in that other England, a gaggle of pensioners were braving it out in the backseats, muttering, squeaking and giggling like teenagers bunking off school. Across from Mitzie and I, a baby in a pram coughed snottily and both me and the kid’s anxious mother, flinched. When we got to the bus station, there was a sound of much squelching and the sharp, sweet, palate-cleansing stink of hand sanitiser flooded the bus as almost everyone squirted and rubbed.
Presentation at the Bristol ‘Untold Stories’ event: Arnolfini; July 27th 2019
In my last novel, CULL, published at the beginning of the year, I envisioned a dystopian ‘other England’ where life for disabled people was almost unbearable, where a bill had been passed to force the elderly and disabled into huge institutions and where the government was developing an experiment in state sponsored euthanasia as a cost cutting method.
It’s a blast! No seriously! I made it as funny and sexy and sharp as I could and it is, I hope, an exhilarating read BUT my research for it included real stories from our community, real experiences of abuse and isolation, fear and aggression from the last few years of welfare ‘reform’ as well as extended research into the Nazi T4Aktion programme of the 1930s. I wrote CULL as a warning. We are precariously close to the arse end of discrimination. It is a novel intended to shake the trees.
Although I must tell you this excellent novel is available in all good bookshops, including the bookshop downstairs, I am actually here today to start a discussion with you about another area of movement and change that needs our close attention.
Climate change.
We now know that climate change is a reality. Not only climate change but RADICAL climate change – protracted periods of heat and cold, storms, hurricanes, drought and flood – mass migration.
Possibly, hopefully, we are beginning to finally wake up to this. Extinction rebellion, Greta Thunberg, and we as disabled people need to leap right into the centre of this potential upheaval. Why?
Because if we don’t get in on this, we might die. Simples.
In May last year Marsha Saxton and Alex Ghenis from the World Institute on Disability wrote:
The clear evidence from past and current natural disasters and refugee situations shows that people with disabilities have a lower survival rate than those without disabilities, and may even be neglected or left to die. Photo journalism showing the impact of Hurricane Katrina in the southeast U.S. in 2005 documented this with tragic photos of dead people in wheelchairs as crowds of other displaced people streamed by.
In 2005 Hurricane Katrina’s death toll was 1,836 people. Old age was a contributing factor. Of those who died, 71% were 60 years or older. Half of them were 75 or more. There were 68 in nursing homes, possibly abandoned by their caretakers. Two hundred bodies went unclaimed. Over 700 people were unaccounted for. The storm killed or made homeless 600,000 pets
A key issue was poverty. Poorer people could not afford to evacuate. And, in America, as in UK – as all around the world – disability and poverty often share a bed.
Brexit extensions and Extinction Rebellions and here we are in April, ducking between showers, whooping at the sight of cherry blossom and grinning up into the lighter evenings. It’s a crazy time, but at least one can feel the coming of summer. I must believe that the days will lighten further and Mitzie is convinced of it! The delightful Mitzie is now six-months into her tenure and is proving a real superhero! There are still a couple teeny things… like the fact that she loves going out but isn’t that interested in going home again… but I was like that at her age so I forgive!
In the darkness though, more death and despair is being caused by the current welfare system. Several suicides in the press since I last posted, including that of Jodey Whiting. Jodey, a mother and daughter, was informed she had missed an appointment and had been, in her absence, found ‘fit-for-work’. This in spite of her severe disabilities including a recent cyst on the brain.
Last week we were told of the horrific and obviously DWP-related death of Stephen Smith. Stephen had been found ‘fit-for-work’ whilst being so disabled he was unable to get to the kitchen to feed himself. At the time of his assessment, he had weighed only six-stone and had not been able to sit up straight. And all this still causes barely a ripple of outrage in the press and wider society even though the DWP were found culpable.
This is a hostile environment …a murderous one. How hard it is to keep from giving up…but we mustn’t. We mustn’t.
‘How does this look?’ I asked, feeling 15 years old. My eyes are still bit blurry but I also have NO fashion sense!
‘Emmm… it’s ‘nice”, said Mum with a worried expression. My heart plummeted.
Books!
You see my Mum can’t lie about things like this. Her using the word ‘nice’ is like a surgeon using the word, ‘hopeful’. Not something you want to hear a few minutes before the op. I had to change.
‘Do you have less shiny trousers? A different top? ‘ She was trying to be helpful. I tipped out my laundry basket but with a feeling of savage hopelessness. The shiny trousers were clean. The others were not just stinky (we can use perfume for that) but muddy. Blinking dog walking.
I had to think fast. There was One Last Thing- a posh black cardigan I had never worn out before. One of those things you bought because it looked lovely on the model but doesn’t really cleve to your life-style. But now…? I threw it on and amazingly Mum’s face brightened. AND it worked with my blue sports bra. Seriously! And the shiny trousers. And the green-blue hair. Oh…did I forget to mention that? (Karen Silk – hairdresser extrordinaire!)
And just like my outfit, the entire evening came together because of other people helping, supporting, directing and saying ‘yes’ to just taking part! It was smashing!
By the time i got to the Town Hall, Bill and team had already begun hanging up the names from Callum’s List and the Black Triangle Campaign and ‘shop-a-scounger’ posters designed by the brilliant Mr. Ogg. The wheelchair was upside-down in the entrance and hemmed off by police tape. And Trish, who was directing the whole thing, had added that extra grisly touch – a bunch of flowers laid by the wheelchair’s side.
Charley B had been setting out the seating with the help of Steve, Rachael, Jane T, Jane D and Heidi and were prepping for their staring roles as dramatic readers- they were, with Paul and Phoebe the profressional actors, going to help bring the novel to life through the three dramatic readings.
Praminda, our frankly brilliant robot engineer, was working with on the tech and Louise from Cakeophony staggered in, barely able to hold up the huge and gorgeous CULL cake! Janet and Helen from Corsham Bookshop and the lovely PGR rep arrived with the booze and books (such a wonderful combination) and we had a quick run through and…
Grace.
Grace arrived.
And then the evening kicked off with Miro Griffiths MBE, Esther Fox from Accentuate and D4D, a mini flash mob, those readings and a Q and A. book signings, very brief pub visit and home.
A packed Town Hall!
I realise that none of this would make sense if you were not there! But please don’t worry! We have got some footage of the evening and will be sharing it with you soon!
And know that we sold 55 copies of the novel that night and the very next morning, a woman strode into the bookshop and demanded 11 more for her friends. as she thought the message was so important! Onwards!
It is Tuesday night and the launch is on Friday. If I don’t eat, do fifty lunges, 100 press-ups and a thousand
Captain Plastic
stretches each hour, I can probably lose the weight and gain the two inches that I feel I need to face the public. I don’t see any real problem with this…apart from the eye thing. Ah…
You see I had cataract surgery two weeks ago and am not supposed to do too much bending, heavy lifting or jumping up and down. I shall blame my current state of podge on that then. ‘Oh this, I shall say whipping up my blouse to expose my shivering pale expanse of belly to the gathered crowds. ‘This is the fault of Bristol Eye Hospital. I would have been whippet-like by now if it hadn’t been for those pesky ophthalmologists. ‘
The good thing is I get to wear the cyber punk-tastic plastic eye piece when travelling or sleeping. I asked if I could have a plastic cyber punk parrot to go with it but I think they thought that was just the effect of the sedation post-surgery.
It wasn’t.
I am nervous. Can you tell?
However, I have got the most incredible team of lunatic volunteers to help put on a bit of a show. Bill and Trish from this incredible organisation https://www.makebelievearts.co.uk/ are helping along with friends and family.
And look what Colin designed for the entrance?! They are the ‘Shop a scrounger’ posters from the first half of my novel. He researched Nazi propaganda and the design resonates and is absolutely chilling!
So, come if you can and if you can’t, watch this space as we are having a short film made and will stick it up on this here website! And if you ask nicely, I might even post you a bit of cake!
Three years, a PhD, a myriad rejections, eventually an excited agent, an amazing publisher and a torrent of support, encouragement and kicking up the arse and LOOK what happened!
CULL has been born and you are all welcome to the party!
I have so much to tell you but just for the moment, I wanted to let you know that, as of January 2019, the novel CULL is in the shops, thanks to YOU!
Your official invitation to the CULL Book Launch:
Tanvir Bush published Cull via award-winning crowdfunding publisher Unbound in January 2019.
In association with Unbound and The Corsham Bookshop, Tanvir now invites you to the launch of her new novel Cull at Town Hall, High St, Corsham, on 22 February 2019 in Corsham, UK, 7-9pm. Assistance dogs welcome!
Seriously. Here is me handing over a pretty (perchance a little dull) South West Guide Dog Association calendar to Grace’s new family for Christmas. ‘Grace is Ms December!’ I twinkle smugly.
‘Ahh, that’s lovely!’, they reply, handing me a calendar they have made themselves. On their shiny calendar, EVERY month is Grace month!!! Grace, and Max her new buddy, Grace with all the balls, Grace camping, Grace eating Grace, Grace…!
‘Holy Bonio, Grace,’ I hiss. ‘How did you pull this off?’
She grins widely and winks, going back to demurely ripping the Xmas paper off the carrot I have bought her on this my first visit to see her since August.
Hugely noble. me!
I can safely say that Grace is VERY happy with her new pack. She is currently doing the Noble Retired Guide (Diva) Dog and it seems to me the whole village has been taken in…I mean taken to her! She has been on more adventures in the last few months than I can list and has made an enormous number of new buddies, human, horse, canine, chicken. And she is cherished.
It is time for me to move on.
But it is tough going. There is no news of another guide dog yet although I am high up on the list and so I continue without that interface between me and the world. I don’t have my Grace walking a little ahead, ice breaking, charming, guiding, disarming. I feel armour-less, a little raw.
Having said that I am enjoying the freedom from dog shit. Oh yes, siree! I still have poo bags in every pocket but I don’t need ‘em. All the dog towels are washed, some even folded in drawers. I have thrown away all the half-chewed toys. I keep her blanket though and sniff it every now and then when I am in need of the honey smoke smell of her ears.
It is 2018 tomorrow and the wonderful Unbound development editor has sent me back some cracking notes on CULL. The next three weeks will see me grapple with some style choices and fiddly but essential re-writes; the button-hole stitching and hemming to ensure the novel holds together in all weathers!
Here’s to the New Year!!
So, dear friends, a huge thank you for all your kindness, support and encouragement through what was for me, and perhaps you too, a particularly rambunctious year!
Have a wonderful start to this next one and I will be in touch again very soon!
Are you well? Many apologies for the long wait between updates but got a lot to tell you. Need a coffee before we start? Milk? I’ll put the kettle on if you get the biscuits.
Okay, here is the dish.
The CULL special edition is going to be with you, the supporters, before Dec 2018 and the trade version out into the shops for around January 2019.
