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The Inner Vision Orchestra

November 1, 2014

Baluji Shrivastav is one of the music world’s most in-demand sitar players. Blind since the age of four, he’s now leading an ensemble of blind musicians.

Baluji Shrivastav has played on Top of the Pops five times, accompanied Stevie Wonder in Hyde Park and, in 2012, performed with Coldplay at the Paralympics closing ceremony. You can hear his sitar clearly in Massive Attack’s famous song Teardrop, and he has recorded with many other acts, including Annie Lennox, Oasis and Kaiser Chiefs.

In 2010 Baluji (known by his first name alone) set up the Inner Vision Orchestra, – specifically to give paid work to fellow blind musicians, and partly because he wanted to address some of the confidence problems suffered by others in his position. They perform regularly together and now, he says, members are getting further professional jobs as solo musicians.

One of Baluji’s aims was to show the world that the ensemble can play music better than many sighted people – he says you have to be very good to get where his orchestra has got to.

“Inner Vision members can play in sync successfully without relying on eye contact or even a conductor,” he says. It’s a skill which impresses sighted musicians, for whom a visual connection is crucial to get their cues. “As we have been practising more and more together, our understanding [of one another] is developing further and further.” They remember the order of play and if in doubt Baluji leads. Rather than rely on a conductor, one musician starts each piece and the rest follow his or her tempo. “I don’t say anything about what instruments there are or what a musician is going to play. They have to tell their own story.”

Baluji’s story is itself extraordinary. Born with sight in the northern Indian state of Uttar Pradesh, he was diagnosed with glaucoma at eight months old. At the time, a neighbour told his mother she had been able to cure her own eight children of the same eye condition with her homemade opium-based remedy, and wanted to try it on Baluji.

“She put the medicine inside my eyelid and bandaged my eyes for three days,” he says. “But when the bandage was taken off, there was a lump in it. My mother asked what the lump in the bandage was, and the neighbour told her ‘it’s dirt, throw it away’.” But the lump was in fact Baluji’s eye and with the other one also damaged, he went blind soon afterwards.

Baluji says his mother realised he was a “born musician” when he started singing at 18 months old. She taught him to play the harmonium, an organ-like wind-powered keyboard used in Indian music.

Baluji was educated at the Ajmer Blind School for boys 300 miles away in Rajasthan. His musical ability quickly shone through – but most of the instruments at the school were made from pumpkin and were incredibly delicate, so children were only allowed to play them in moderation. Baluji was desperate to play more and one day he happened upon a sitar. Despite protestations from his teacher that the instrument was too big for such a small boy of eight, he started to play and immediately picked out a number of tunes. He fell in love, and never looked back.

By the age of 10, Baluji was conducting his first non-sighted orchestra at his school, featuring more than 80 musicians. He had to find a way of doing it in a non-visual way and hit on the idea of using a xylophone where each note he played conveyed a pre-arranged instruction.

The emerging virtuoso went on to gain two music-related degrees but when his family lost their lettings business he put his work on hold to help them. So they could continue to earn a living, he taught them to weave cane chairs, a skill he had learned at the blind school. In his 20s, Baluji did a masters degree in sitar before moving to France and then later to the UK.

While he says the attitude to blindness in Asia is not good, it was the negativity from his family and community that spurred him on to, in his words, “show them that being blind is not a curse but a boon”. He believes he wouldn’t have fulfilled his musical potential, pushed himself forward or gained such positive attention if he hadn’t lost his sight.

In contrast to the positive spirit he forged in northern India, Baluji is concerned by the attitude of some blind people in the UK. “I see lots of blind people here who don’t have any confidence,” he says. Though many might disagree with his assessment, he thinks they may have become a bit “lazy” because they receive “too many benefits and comforts”.

A recent tour has taken the Inner Vision orchestra to small venues all over England by minibus and public transport. This can present logistical challenges, says Baluji says. The musicians have had problems with taxi drivers refusing to take their guide dogs, and one dog’s tail got caught in a taxi door when it closed.

But assistance is necessary for Inner Vision members to be able to work optimally and each person has different needs. “Some of our musicians were born blind but some went blind at a later age and need more help,” says Baluji. “We need volunteers to take care of them and to look after guide dogs while their owners are on stage performing.”

The Inner Vision Orchestra has just finished a UK tour and recently reached their £10,000 target on a crowd-funding website to make a film about their work. Watch the trailer on YouTube.

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‘Cured’ Of Cerebral Palsy After 50 Years

October 31, 2014

In yesterday’s Sun, (£) I read a story that really made me think about something I haven’t thought about for quite a while- the ‘cure’ debate.

When David Hayes, 58, was 5, he was diagnosed with Cerebral Palsy. He spent his life “struggling to walk and using wheelchairs.”

The article says that Mr Hayes  spent 15 years on the board of directors for Scope and four as national vice chairman. He retired in 2007 due to chronic pain.

Readers, Scope used to be the main UK charity for Cerebral Palsy. It is only very recently that they have expanded to supporting all disabilities. So the fact that Mr Hayes was working for this particular organisation tells me almost instantly that Cerebral Palsy was an important part of his life, a part of his life that he had clearly accepted.

Mr Hayes says in the article  “I never let the condition I thought I had hold me back.”

However, five years ago, Mr Hayes’ son, Philip, began feeling pain in his hip during cold weather. It was only then that doctors realised that David Hayes had been misdiagnosed, and that the condition he had was in fact a congenital deformity.

Readers, given Mr Hayes’ age today and the medical knowledge that was available in his childhood, doctors cannot be blamed for the misdiagnosis. That is far from the point of this post.

The point of this post is that the story made me think very hard about my own relationship with Cerebral Palsy- the condition I’ve had since birth.

Mr Hayes does not reveal, in the article, any emotional difficulty coming to terms with the misdiagnosis. He has had hip and knee replacements which, he says, have given him a new lease of life. He is now able to walk pain-free and says that finding out his condition could be cured was, for him, “a dream come true.”

Readers, I’m much younger than Mr Hayes, but his story and reaction brought a question I thought I’d forgotten back into my head. If I was put in Mr Hayes’ position tomorrow, told that I had been misdiagnosed and that, in fact, I had a condition that could be cured, what would I do?

After being in the constant company of Cerebral Palsy all my life, I know the condition inside out. I know its types, its levels. I even know most of its medical terms. Sometimes, I think I have more knowledge of Cerebral Palsy than most of the healthcare professionals I’ve met.

Besides, readers, all my closest friends are people with Cerebral Palsy, the parents and siblings of people with Cerebral Palsy, and healthcare professionals who treat Cerebral Palsy. If I lost Cerebral Palsy, I would lose the strongest connection I have with all of them.

Once before, a couple of years ago, I wrote here about whether I would want to be cured.

In that post, I wrote that if I was cured I would “buy a pair of high heels, take a driving test, pass it and drive a fast car. Then I would cure those of my friends who are still alive today and have long, clear, verbal conversations with them on long walks around a lovely park.”

But what if I was misdiagnosed? What if I had a whole new condition, maybe one that could be cured, or one that would allow me to drive or wear high heels?

The answer, readers, is that any new condition that doctors may correct my diagnosis to tomorrow would be a condition that I would know nothing about. And that, readers, by the way, includes a total cure, entry into what I call the ‘mainstream world.’

Any cure I’ve ever imagined before has been a cure that would also be available to my friends with CP. But would I want a misdiagnosis, which may be a cure from CP, but which would only be available to me? Would I want an exit, an ‘escape route’ from what I’ve known all my life?

The answer is that such a situation would take me into a whole new world. To some, entry into a whole new world may feel like a magic carpet ride. But after a lifelong relationship with Cerebral Palsy, I, for one, now know that I wouldn’t want to enter a whole new world- at the very least, not unless I could share it with my friends.

Cerebral Palsy is my world. It has been my world for so long now that if I lost it, I would lose a part of myself. A big, important part of myself.

Would my friends still want to know me if I left the world of Cerebral Palsy? I don’t know. They might not like the person I’d become given a driving license and a pair of high heels. I don’t know if I would like the person I’d become given a driving license and a pair of high heels.

Do I want to find out? That question opens a massive can of worms, readers. I know that I would find it very, very difficult now, almost impossible, to identify with another disability in the same way as I do with Cerebral Palsy. I think that I would personally face great emotional difficulties if I found out I was misdiagnosed.

The world of Cerebral Palsy is a strange one, readers. Maybe the specific worlds of every disability have this in common- I don’t know.

But in the world of Cerebral Palsy, at least, I have seen that if your family member dies and you choose to stay connected, you are welcomed with open arms. Yet I can clearly see there being a difference if a person with CP was misdiagnosed.

Misdiagnosis would instantly take a person out of the world of Cerebral Palsy. Maybe not out of the wider world of disability, but definitely out of the world of Cerebral Palsy.

If one of my friends was misdiagnosed, I would personally feel that we had lost the most important thing we had in common. As much as I would still love them as a person, I would feel that I could no longer share the most important part of myself with them.

Readers, for me personally, a part of me will always have Cerebral Palsy, no matter what cure or misdiagnosis may come along in my future. But would my friends from my world believe me if I told them “I may have been misdiagnosed, but I’ll always understand you?”

I don’t know the answer to that question, and I would hate it if the answer was no. So, after many struggles and rants, I have come to the conclusion that Mr Hayes can keep his dream come true. And while I very sincerely and honestly wish him very good luck, for me, personally, the situation that he now finds himself in would be a nightmare.

 

 

 

 

 

ESA Cuts ‘Considered': Two Vox Political Readers, And A Same Difference Reader, React

October 31, 2014

This graphic is shared with many thanks to Mike Sivier.

 

A reader of Same Difference wrote to me on Facebook yesterday saying:

“IF THIS GOVERNMENT CUT THE SUPPORT ELEMENT TO MY EMPLOYMENT AND SUPPORT ALLOWANCE. I AM PUBLICALLY MAKING THIS COUNTRY AND ITS PEOPLE AWARE THAT ANY SUICIDAL ACTIONS THAT I WILL TAKE IN PROTEST ARE WHOLLY AS A RESULT OF THIS GOVERNMENTS OR SUBSEQUENT GOVERNMENTS ACTIONS IN MAKING MY LIFE SO INTOLERABLE AND ISOLATING AND UNBEARABLY MISERABLE THAT IT IS NOT WORTH LIVING.”

ESA Cuts ‘Considered-‘ The Graphs The Tories Don’t Want You To See

October 30, 2014

The Mirror have published two graphics on ESA spending and what the changes would mean.

Here’s what gets spent on ESA now:

They’ve also published a graph showing what would happen if the ‘considered’ cuts became government policy.

They rightly ask: do disabled people who need supplementary income to live REALLY need their benefits cut, ahead of pensioners who make up at least 58% of welfare expenditure? No.

 

Progeria Girl Ashanti Smith, 11, Ordered By Teacher To Remove Pink Wig

October 30, 2014

A terminally ill  schoolgirl who suffers from alopecia has been left devastated after teachers forced her to remove a wig she wore to school.

Ashanti Elliott-Smith, 11, wanted hair like other girls but says she was told to take it off because it was pink and could encourage others to dye their hair.

She suffers from Hutchinson Gilford Progeria, a rare ageing disease that makes her look 80. She is not expected to live past her 15th birthday.

The youngster “fell in love” with the wig after her mother’s friend gave it to her last Wednesday.

Her mother, Phoebe Smith, dropped her off at Oakmeeds Community College in Burgess Hill West Sussex, the next day. She says teachers said her daughter looked “glamorous” and “beautiful”.

But just minutes later a teacher told Ashanti to remove the wig.

Miss Smith, 29, from Burgess Hill, said: “She was devastated when they told her to take it off. Her little heart was broken – it is disgusting.

“The wig is bright but she should have the right to wear whatever colour hair she wants.

“She loved the wig because it is big and pink, pink is her favourite colour, and she was obsessed with the wig.

“When I took her into school three teachers by the office said she looked glamorous and beautiful and said how lovely her wig was.

“But as soon as I turned my back they told her to remove it. It was so embarrassing for her.

“It was the first time she wore the wig into school and she has not been back in since last Thursday.”

Ashanti is still contemplating whether to go back to school after half term on Monday.

Her mum added: “If she goes back next Monday, she definitely will be going back wearing the wig.

“They are not going to get my child to take her wig off. If it makes her feel beautiful then they should let her wear it.

“She knows she looks different. She does not have the choice of wearing make up or wearing bows in her hair, so wearing a wig should be allowed.”

Ashanti started at Oakmeeds in September.

Miss Smith continued: “She looks a lot different to other children. We get a lot of bad comments about Ashanti and this knocked her right back.”

Colin Taylor, Headteacher Oakmeeds Community College, said: “Ashanti attended school in a large purple wig which was the first time she had appeared in school wearing a wig or any form of head wear.

“Her Learning Mentor, who meets her every morning and supports her throughout the day along with a Learning Support Assistant, spoke to the Head of Year about it.

“It was agreed by the Director of Inclusion and Head of Year that Ashanti would wear the wig home but not in lessons because it was not cold in the school and she had never wanted to wear one before.

“We tried to discuss this with Ashanti’s mother on Thursday but we were not able to make contact with her.

“We have worked closely with Ashanti’s mother to ensure her wishes that her daughter is treated like all other pupils are met.

“Ashanti is a pleasure to have in the school and we believe we have done everything we can to meet both her needs and her mother’s requirements during the first half term.

“Ashanti has settled well at Oakmeeds.

“At no time to our knowledge did she request special consideration about head wear but we would fully understand it if Ashanti was to need a hat or indeed a wig when the weather gets cold – even indoors.

“In the past other children have worn wigs following serious illness, but ones that were of a natural look – not large brightly coloured ones.”

Maximus Are The New Atos: Destroy Maximus

October 30, 2014

Originally posted on the void:

atos-black-triangleThe BBC are reporting that US company Maximus has won a £500 million contract to take over from Atos administering the despised Work Capability Assessment (WCA).

Maximus, who already have a contract running Iain Duncan Smith’s failing Work Programme, will now carry out the computer based assessments used to strip benefits from sick and disabled people by declaring them ‘fit for work’.

Atos claimed they pulled out of the WCA after staff were threatened.  But this was a fucking lie.  What happened to Atos was much more toxic.  Regular and repeated protests were held outside Atos offices all around the UK, including their glitzy London headquarters.  They were hounded off social media, whilst their corporate identity was repeatedly hijacked despite a string of petty legal threats.  Other parts of their business were affected.  The Co-operative bank were successfully lobbied to end their occupational health contract with Atos.

Everywhere Atos…

View original 239 more words

Ministers Considering Cuts To ESA, Leaked Papers Reveal

October 30, 2014

This would be a real disaster for so many…

 

Ministers are considering drastically cutting the main Employment and Support Allowance sickness benefit, internal documents seen by the BBC suggest.

New claimants, judged to be capable of work with appropriate support, could be given just 50p more per week than people on job seekers allowance.

Current recipients get almost £30 per week more.

The Department for Work and Pensions said the ESA proposals were not government policy.

I have taken only a snippet of the article, because it goes on to cover many related issues that, while very important, are not new.

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