Tweezer May making an ejeet of herself in South Africa

It don't mean a thing 'less you got that swing. And Tweezeer, you're a fucking Tory, thus you have no rhythm; and as Tories are also vampires, you have no fucking soul either. 

Tweezer, if I may make a suggestion. You can't dance, so stick to what you're good...

Hmm, tricky one that. 

More anxiety as hospital lung function team discover a "you've really got nothing to worry about" nodule on my lung

Here we go again. 

About three years ago I had a cancer scare. Out of the blue, my GP called. “Hello, Mr McGovern. We have the results from your recent chest x-ray. There’s nothing really to worry about…” Oh OK, I think. My mind racing as my imagination kicks into action.

“So why I call me if there’s ‘nothing really to worry about’” I nervously interpose. My mind conjuring up worst-case scenarios, as the fatalistic Celt in me takes over.

“Well the X-ray shows a small anomaly on your left lung, and we think it would be a good idea to come and have a chat.” 

What is it with health workers and ‘WE’? Who is exactly is the ‘WE’ to whom she’s referring?

“Should I make an appointment?” I ask, my mind made mad as a maelstrom of malaises meandered through my thoughts since taking the call.

“No, it OK. Can you come in today?” 

More bells knell 

Eh? Why the fast-tracking if there’s nothing to worry about? Christ knows what happens when it’s serious! 

“Yes, of course, I can make it today,” I replied deflated, as any notion of ironic posturing seemed pointless.    

Turns out that after a series of tests including a CAT scan, at which I broke the Kings College Hospital record for projectile vomiting, a small nodule, about 4 mm, was found on the left lung. The nodule was observed for a couple of years and felt to be benign.

Fast forward to the present day. A while ago I volunteered to take part in a lung testing research programme. As an ex-smoker with either asthma or COPD I fulfilled the criteria for the project.

So last week I took myself along to St Thomas’ Hospital and underwent some lung function tests, a CAT scan and X-rays. The health worker told me that if anything serious manifested itself from the scan or X-rays I would be contacted. 

Today I was contacted.

“Hello Mr McGovern, this Dabria (not her real name), calling from St Thomas’ lung function team. We (that ‘WE’ again) have found a small nodule on your lung. But, it’s nothing to worry about. You will be booked in for a further scan in November.”

“Oh, that’s comforting to know”, I sardonically croaked. “Just for the record I had a similar call from my GP about three years ago, and it turned out to be a cancerous growth, albeit benign, on my left lung.”

“As I said Mr McGovern there really is no need to worry. If there was we would be booking you in to see a consultant. The report will be sent to your GP. OK?”

“No, I’m not OK. I’m quite anxious actually. What’s the timeframe for my GP receiving the report, please?” I asked in as polite a tone of voice I could muster considering I was by now choosing the songs I wanted to be played at my funeral.

“Your GP will receive the report when the consultant gets around to writing it (honest, her exact words)” she chirped, though what sounded like a clenched jaw.

“Oh. What ‘when he’, you know, ‘gets around to writing it?’ I suppose it’s quite nice playing a round or two on the Algarve this time of year.” I throw in for no other reason than with a break in my anxiety I felt it would be opportune to lob in a pointedly sarcastic parting shot.

Now don’t take this the wrong way. I have the greatest respect and admiration for our NHS. And yes, I regard the service as mine. Yet, sometimes they fall down on the job. In my opinion, there wasn’t any clinical reason for the lung testing team to call me today given that, by their own admission, that this was not a health emergency. 

By nature, I am a fatalist. Forget the glass half empty or full, at times I simply don’t even have a glass. Telling me not to worry is a bit like expecting Nigel Farage to have an epiphanous moment and converting to the Bremain camp – it ain’t going to happen.

So, here I sit trying to remember the lessons my Alexander teacher taught me; but being too bound by anxiety to give a fuck about that, instead wallowing in my own fatalistic fashion.     

Carnation for a Song

Dr. Joseph Healy my work colleague and friend is a man of many and varied talents. Joseph is an Irishman of a certain age deeply involved in LGBTQ politics as well as being a committed Socialist and devotee of the arts. 

Last night I spent an hour or so watching and listening to a wonderful production at the Young Vic in which Joseph starred. ‘Carnation for a Song’ is a delightful production that distills the stories of 14 LGBTQ participants.

The set has the 14 players seated facing in various directions. Each holds a green carnation. The green carnation is significant as it is a plant that is not found naturally. The use of this flower in the LGBTG culture may go back to Oscar Wilde who remarked in an 1889 essay that green was “in individuals…always a sign of a subtle artistic temperament…”.     

The stories were then told individually and collectively through song, poetry, dance, and readings. Each player gave the audience, through their chosen medium, their personal journey through life as a gay, lesbian or bisexual person.

A funny, sad, reflective, thought-provoking and highly entertaining evening. Thanks, Joseph and Company.

  

  

Royal Festival Hall falls down on disability access

Popped into the Royal Festival Hall this evening to use their accessible loo. The one sited on the ground floor opposite the magnificent yellow lift that makes a wonderful noise.

Anyway, got to the adapted toilet and noticed there has been a refurbishment. Trying the door I found the toilet to be locked. Then I spotted this notice on the wall:

 

On calling for assistance I had then to ask my PA to go and find the key to open a door for me to go for a pee. My PA came back with the key and I peed. 

On peeing my PA was about to return the key when I said no, we'll phone the RFH and let them collect the key. When the RFH employee returned to pick up the key I asked whether all the public toilets in the building were locked. She answered no. I informed her that in this case, the RFH was guilty of discriminating against disabled people.

In fairness to the worker, she wasn't able to answer me and deferred us to her manager. Wanting to get home I left. And I intend bringing the issue up with the RFH on Monday.

Locking the toilet is bad enough. The wording on the notice is outrageous. Who advised the RFH on this notice? Whoever it was certainly is certainly no proponent of the Social Model of Disability. The idea that disabled people have 'multiple disabilities' displays a monumental lack of understanding of disability. Then to compound their sins they insist the disabled person must be accompanied by an assistant.

So much for the concept of independence. This means, had I been alone last night, despite being a wheelchair user, with several impairments, I would not fit the RFH's criteria for using the changing places toilet.

 

More aggro with the DWP via Access to Work

God bless the DWP and all who fail in her. 

A salutary lesson a few years ago taught me to keep an eye on my Access to Work (AtW) funding anniversary. People with DLA and PIP awards are alerted a couple of months in advance of their award period ending. This allows disabled people to prepare for their reviews and new claims. 

Conversely, another arm of the DWP, AtW does not inform its users of their funding coming to an end. Of course, these are two separate services within the DWP, however, one would expect a bit of consistency with the rules of PIP and AtW.

When I got bitten by AtW nearly four years ago, putting myself in debt to the tune of around £3000, albeit for a few months, I now ensure that my request for an AtW grant is made in good time.

My first two AtW grants were for periods of three years, the maximum period. Last year I put in a claim for AtW and to my surprise, and consternation, I was granted an award for twelve months. Of course, I queried the inconsistency of this decision. Why after being awarded two three-year awards was I now reduced to a one-year grant? 

After going to-and-fro with an intractable AtW officer I gave up and accepted the twelve-month offer, with a promise to look more sympathetically at my claim next year.

Next year has come around, and it happened today.

A ‘very nice’ AtW officer called and asked me the usual questions, to which I gave honest answers. After about 15 minutes, as the interview was drawing to a conclusion, I asked how long the award would be, concerned that my current award was for one year. On looking through my records the officer stated it was probably due to the fact I didn’t receive PIP.

“But I receive DLA” I said, “Isn’t that an equivalent? In fact, I’d been in receipt of DLA for almost 30 years.” This information in no way moved the stalwart from the DWP who assured me that as her file on me did not have a record of me receiving this benefit it was unlikely that I was actually getting the benefit.

WTF! – I didn’t say this as it’s rude. Yet I felt like having a right pop at the fool.

For the next 10 minutes, there ensued a rather strange conversation. After each exchange, the poor AtW officer back peddled even further. At one point I had pushed her so far onto her backfoot that she splurted: “Mr McGovern, you do know these grants are discretionary on the part of Access to Work.”

Wow! A DWP officer resorts to implying that she has the power to remove or withhold a benefit or grant. What a gift. At this point, I asked for this inference to be given to me in writing. Suddenly, there was a change in attitude. The officer, whose manner started friendly, and had quickly changed to aggressive and evasive when challenged on various points, suddenly reverted back to friendly again.

We parted company with the likelihood (her word) that I would be awarded the maximum grant. So, my dogged tenacity possibly won the day. Yet I came away from the exchange, pissed off, tired, and pretty fed-up with the world. Why should my attempts to get support to enable me to work be a war of attrition? Why is claiming benefit or grants or public services treated so punitively?     

The Alabama 3, joined by Robert Chaney, and The Galway Street Club in one evening

Got invited to watch Alabama 3 tonight at my local jammin’ joint, the Jamm. On arriving I was met by a stage full of young musicians that looked like a rag-tag bunch of buskers joined together to do a super gig. Which is pretty much what the Galway Street Club is, in that they are a group of street musicians who perform their music at gigs.

The band play an eclectic range of folk, rock, blues and ska frenetically juiced-up on the sheer love of the thing they do…playing music while jiving. The energy they put into the music was complemented by a kaleidoscope of movement that left this member of the audience bombed out aurally and visually.

A band definitely worth getting to know; and I’ll certainly look out for their future gigs here and in Ireland.

The Alabama 3 unplugged, Larry Love, lead vocals, Be Atwell, vocals, the brilliant Nick Reynolds on harmonica and the exceptional Mark Sams, a.k.a. Rock Freebase, on bottleneck guitar, as ever beautiful.

However, I did feel there was something missing without the vocal contributions of either the beautifully voiced Aurora or the amazing Zoe Devlin.

A surprise appearance by Floridian troubadour Robert Chaney went down very well as Robert and the band performed a rousing singalong of “You are My Sunshine”.

Another great night out with Siobhan and our lovely friends.

Message of Solidarity from the TUC GC and TUC Disabled Workers Committee

Last week Bookmarks a popular politically Left bookshop was attacked by right-wing extremists. A group of masked extremists entered the shop last Saturday chanting fascist songs as they threatened staff members. The thugs screamed abuse, tore up signs advertising books and focusing on publications they disapproved.

Today, a week later, a solidarity event was held across the road from the bookshop at the Bloomsbury Central Baptist Church. Speakers at the event included:

• Tariq Ali, campaigner and author of Street Fighting Years
  
  
• David Graeber, author of Bullshit Jobs and Debt
  
  
• Hsiao-Hung Pai, author of Bordered Lives and Angry White People
  
  
• Robert Verkaik, author of Posh Boys
  
  
• Louise Raw, historian and author of Striking A Light

• Ann Mitchell, stage and TV actor, who will read a poem
  
  
• Louise Regan, Equality Officer, National Education Union
  
  
• David Rosenberg, author of Rebel Footprints: 

• Weyman Bennett, co-convenor of Stand Up to Racism

• Lindsey German, author and Stop the War Coalition

Last week I was asked by the TUC if I would be able to deliver a message of solidarity at the event. Her is the message that I read out at the event:

Good afternoon Comrades

I’m Seàn McGovern Unite member and Disability Rep on the TUC General Council bringing you a message of Solidarity from the TUC Disabled Workers’ Committee.

Comrades, last week’s attack on Bookmarks by UKIP thugs is yet another reminder of a burgeoning extreme right-wing movement in the UK.

Indeed, we are witnessing a resurgence of neo-Nazi and fascist parties across Europe.

And then there’s Trump whipping up Islamophobia and race hatred of Latinos aimed at the poor and dispossessed of the United States.

In the UK dog-whistle politics has become the norm with demagogic politicians the likes of Farage and Boris Johnson making inflammatory statements that serve their right-wing political agendas.

Comrades, disabled people know all about being scapegoated.

It has been our lot down the centuries.

Today the propagation of poverty porn on our TVs coupled with the vilification and demonization of disabled people also makes us targets of hate crime

So, to paraphrase Pastor Niemoller:

When they come for our Muslim sisters and brothers, 

When they come for our Black brothers and sisters, 

When they come for our Jewish neighbours, 

When they come for our migrant workers, 

When they come for our LGBT communities and 

When they come for disabled people 

Let’s be there shoulder to shoulder and cry – “No Pazaran”

Solidarity

Widespead Accusations of Anti-Semitism in the Labour Party are a Smokescreen

Corbyn is being so viciously attacked in the area of anti-Semitism because they know just how passionate he is about the defeat of anti-Semitism and racism.

Finding and exploiting people's weaknesses has always been a ploy to 'get at' individuals. This can be very effective on a personal level. The attacks on Jeremy are being orchestrated with military efficiency. 

Even when accusations are directed at others Jeremy is drawn in by association. He is being attacked because he is the Leader of the Labour Party and due to his long history of fighting anti_semitism and racism.

The governing Conservative Party is in disarray. While areas of our civil society such as health and social care are in crisis this government is mesmerised by Brexit. The government is so weakened; and, it is lacking the confidence of the country

Therefore, with the possibility of an election pending the establishment, with the assistance of some prominent Jews and treacherous members of the PLP, is scared of a Jeremy Corbyn election.

Disability Access has Many Dimensions

Yesterday, Andy, a Unite Comrade and disability activist, posted this on Facebook. 

“Just got refused access to tram – ‘no room’. Yes it was crowded but 6 people not in wheelchair allowed. Go figure…”

Andy has more bottle than me. As a wheelchair user I would not even attempt to try to board a crowded bus during rush hour, or indeed any time. And this isn’t restricted to transport. Public meetings, cafes, bars, pubs and restaurants present similar problems to wheelchair users as public transport.

A public transport vehicle or building can be fully disability access compliant yet prove to be inaccessible. Access works on an empty or moderately populated bus. The driver is alerted, she closes the doors, the ramp is lowered, the doors re-open, the wheelchair user boards the vehicle, and positions herself in the allocated space. 

However, when crowding and overcrowding are factored into the equation space becomes limited. Sometimes passengers are so crammed in to the bus that those wishing to alight from the vehicle have difficulty moving along the bus.

Since you can’t fit a pint into a half pint pot, what is the solution? How do we fit wheelchairs onto buses, trams or trains where there is literally no room to move?

Personally, I find similar problems in public meetings. As a rule, I prefer to be close to a door to facilitate easy egress. Trying to extricate myself from a crowded room draws unwanted attention, and I feel as though I’m being disruptive.

Pubs and restaurants present similar difficulties. My friends are great. Usually when I’m invited out to eat or for a few beers my pals have researched the venue and checked out the access. But a pub with level access and an adapted toilet (my main access needs for pubs and eateries) becomes fairly inaccessible when it begins to become crowded. 

Should I expect pub landlords to restrict the numbers of drinkers allowed access in order to satisfy my access needs?

Though while pub overcrowding is a difficult issue. The same can’t necessarily be said for restaurants. The same problems present themselves when eating out. Why do restauranteurs feel the need to occupy every square centimetre of their establishments with tables and chairs? They cram tables and seating into every conceivable crack and cranny. Of course, it’s to maximise profits. But for wheelchair users, and no doubt others, it makes life very difficult.

The solutions to bus and tram design are possibly easier to arrive at than overcrowding in pubs and restaurants. Designers could look to incorporating wheelchair only spaces on buses. Spaces on buses and trams controlled by the driver and cordoned off for wheelchairs only access.  

Unfortunately, I don’t have ready solutions for all these problems. 

But of course, the tram driver should not have stopped Andy boarding the vehicle while allowing half-a-dozen passengers to board.

A National Independent Living Service is needed for the universal provision of social care and support

Hello, I’m Seàn McGovern, a trade union and disability activist who works in the social care and support sector as a direct payments worker.

Comrades, we have a government riven by internecine conflict.

A government that dithers over Brexit while UK the social care sector is in chaos.  

English councils will have managed reductions to their core funding from national government totalling £16 billion between 2010 and 2020.

Since 2008 local authority spending on adult social care has fallen by almost 10%.

However, with the growth in the elderly population funding has fallen by 13.5% in real terms.

Between 2017 and 2020 a further funding gap of £2.3 billion is expected.

We hear of people with complex social care needs that are doubly incontinent sleeping on plastic sheets in order not to soil their bed linen.

Disabled people who cannot leave their homes because they are unable to clean themselves and so wish to preserve their dignity.

Social care packages are being cut to the bone.

Under the Independent Living Fund scheme disabled people enjoyed care and support packages that regarded social interaction as a human need.

Today care managers reduce these packages to a bare minimum, and yes, below.

People may be visited two or three times a day, seven days a week.

They may encounter different agency workers at every call.

Comrades, a million disabled people are going without the social care they need to eat, dress, or leave the house.

With a further 1.2 million older disabled people in a similar position. 

The number of older people with unmet care needs increased by 200,000 in the last year alone.

Workers, Comrades, who themselves are an undervalued group.

But I’ll come to those who deliver the services in a minute. 

The crisis in social care is leading to more and more disabled people experiencing social isolation.

Which in turn creates social exclusion.

Whose debilitating effects can lead to a break down in mental health, greater incidence of suicide and a general deterioration overall health.

Ex-ILF recipients are seeing their packages stripped right back.

This despite the fact that the government is continuing to pay councils the ILF budgets until April 2020.

Unsatisfied with cutting care and support packages, Comrades.

Many councils are now totally disregarding the ethos of Personalisation, of giving control of personal care and support is eroding.

Direct payments is a method whereby disabled people buy in their own care and support.

This has become the preferred method of care and support delivery for a majority of people deemed to have care and support needs.

Its selling points have been personalisation, whereby the service user with her or his own budget were afforded more independence and choice in arranging their support time.

It affords greater choice giving flexibility, continuity and more creativity in the day to day running of social care and support.

Essentially, it widened our scope for control, thus greater independence.

Today however care managers are trying to force service users to take on specially designed payment cards.

Cards that allow the council to closely monitor every penny you spend, when you spend it and on what it is spent.

Cards that give the council the power to come in at any time and cut payments.

Just to make things clear.

This crisis cuts across every aspect of social care and support.

Disabled children, young adults, adults of working age and elderly people are impacted aversely by the austerity measures in social care.

I suspect you’re all now waiting for me to announce some of the positives to personalisation and social care and support.

Sadly folks, I can only add to the ingredients of this perfect storm of a crisis.

Despite the cuts to packages and the ever narrowing of benefits of personalisation and social care, many have to pay for this privilege.

Yes, many recipients of social care and support have a personal charge levied.

In some cases, people are paying in excess of £70 per week.

People who rely on state benefits.

Fundamentally, this is a tax on disability. 

This tax has created a new phenomenon known as “social care debt”.

This occurs when people become so poor that they cannot afford to pay the personal charge for social care levied on them by their councils.

It is estimated that around 160,000 people are living with “social care debt”.

Councils have brought around 1,100 too poor to pay their personal charge to court.

Even taking things from a service users point of view, I think you’ll all agree that social care and support is in crisis.

Yet Comrades, disabled people are but one factor in this chaotic equation.

The people who deliver the services are also going through a crisis.

Recent figures show that the annual turnover of all care staff was 27.8 per cent.

Hardly surprising given the terms and conditions under which they work.

Zero-hour contracts appear to be the norm in this sector.

Around half of them are paid at the minimum wage of £7.83 per hour.

A typical care worker could begin work at 6 am.

Finish work at 8 pm.

And yet only receive 7 or 8 hours pay, often less, for what is in effect a 14-hour day.

Personal assistants, carers and support workers employed by direct payments clients often fare no better.

Much care and support is planned for three to four short visits per day.

Maybe 45 minutes in the morning followed by 15-30 minutes slots during the day into the evening.

As a consequence, these workers usually depend on more than one job to build up working week.

I know PAs and carers who have four and five clients per week. 

Such job insecurity is precarious at its best and financially, physically, mentally and emotionally challenging at its worse.

Basically, our social care and support system abuses both recipient and care provider.

We as a wealthy and civilised society cannot leave the delivery of these services to the vagaries of an austerity-imposed economy an economy enslaved by neoliberal vampire capitalism.

Comrades, just as the post-war Atlee government created an HNS free at the point of delivery and need.

Some in the movement are calling for social care to be firmly tied into the NHS.

However, there is a groundswell within the movement that supports a National Independent Living Service.

We view health needs and social care, or as we prefer to term it, Independent Living, as two separate, indeed sometimes opposing entities.

We believe that inextricably tying social care to health would further medicalise disability.

This is at a time when the disability movement is promoting a Social Model of Disability as the paradigm to follow.

For example, the borough in which I work has around 600 people using direct payments.

However, only around 30 of these have continues health care packages.

The support plan that underpins my care package does not have any medical interventions.

Instead it allows my needs to be met by PAs who support me through a number of personal care, daily living activities such as meal preparation and cooking as well as social-type activities, such a tonight.

The only viable solution to an effective and dignified delivery of social care and support is via a National Independent Living Service.

A service akin to the NHS that is free at the point of delivery and need.

A standalone service with its own budget funded through general taxation.

A service not at the mercy of local council budget cuts.

A service that can link in with health, social services, education, housing, employment, etc.

A service that serves both our care and needs as well as support in our social lives.

A bread and roses service that sees beyond the corporeal seeking to cater for our overall wellbeing and social independence.