The fireworks, after Sadiq Khan’s recent display, have certainly been impressive, with the likes of Roger Helmer foaming and frothing at the mouth. I am happy with what the current leadership of Labour has achieved. I have no intention of ‘smearing’ members of Labour. I would dearly love to see a Labour government. But it is an inescapable fact that there is, in fact, no version of Brexit that will satisfy both ardent supporters of Brexit and citizens of the UK who want to remain members of the European Union. If a further referendum is held, the possibility is that whichever side wins won’t win by that much of a margin. If ‘leave’ win, the words ‘be careful what you wish for’ will come back to haunt many. Many of the people who want a People’s Vote want ‘Remain’ to win, and simply wish to hold a referendum to maintain the importance of ‘democracy’. But democracy would possibly mean the UK could bring back capital punishment. Brexit as a solution to all the problems caused by neoliberal capitalism including austerity is a false, fraudulent prospectus. Attacks on ‘Blairites’ are in my view utterly irrelevant now to getting Labour into a position to form the next Government; this does not mean I am a ‘Blairite’, and such a lazy attack would be yet another dead cat.
There are some people who are determined to make this all about Jeremy Corbyn. I voted for Jeremy Corbyn twice, as I wanted stability in the Labour Party. I think though the obsession with him has become insufferable, including people who spend all the time flooding my Twitter timeline with plans for “Twitterstorms”. The perception is that Jeremy Corbyn has become more obsessed with getting into Number 10, rather than sorting out other desperate problems within his party, including Brexit. There’s an argument that ‘conference had decided’ that there would be a “people’s vote”, and failing that there would be a general election. However, events have been evolving fast. The Labour position is deeply unconvincing, and, whilst Jeremy Corbyn’s position ‘has not changed’, the notion that it will be able to negotiate successfully a solution to Brexit, the unicorn approach, is deeply unconvincing. This is nothing to do with my views of Barry Gardiner. The nature of the debate has become extremely toxic, with callers to local radio here in London referring to ‘illegal immigrants’ who can be shown not to be telling the truth with bone marrow aspirates diagnosing to the year their biological age, or “strapping Sadiq Khan” to a Catherine wheel (like yesterday).
The leader of the Conservative Party has had her position consolidated as a result of the failed ambush by the ERG. The only event which is likely to happen is that preparations are being made for the Theresa May negotiated agreement with the European Union to be rejected by parliament. In which case, a central plank of Government’s policy will fall, and it could be then that Labour is saving itself for a ‘no confidence’ vote in the Government, having previously precipitated a no confidence vote in the Prime Minister personally. Brexit has already proven to be a ‘financial opportunity’ for those sympathetic to the views or personnel of this Government, including problematic private companies taking on substantial financial transactions in commercial transactions extracting money from the State to fund their shareholder dividends. This is classic privatisation. The worst is yet to come, of course, with ‘patriotic’ Conservatives short-selling the currency, so betting on its demise, to make millions.
This is of course a far cry for why certain might have voted to ‘leave’ the European Union. It is speculation why exactly they believed a position which was impossible to negotiate bilaterally, given the sheer torrent of lies told by Nigel Farage, David Davis, Dominic Raab, Boris Johnson, and their ilk. But the potent ‘taking back control’ did tap into a rump of voters who felt as if the economy had not been working for them, by immigrants under-cutting their wages, and themselves adding to pressures on state-run services, inter alia. Many such voters, many of whom were also Labour voters, do not agree with the nationalism of some members of local clubs. The narrative had emerged that the UK can make a success on its own.
It is, however, important to remember that this mess should be owned by the Conservatives. This means that the failure of Brexit must be owned by the Conservatives. It is all very well for Theresa May to ask for no arguments and reconciliation, but she was the one who took her toys home two years ago and produced a deeply divisive partisan strategy for conducting the negotiations on behalf of the country with the European Union. The European Union cannot be blamed for their agreed settlement. If parliament votes it down, it should not be allowed to allow ‘no deal’ to be shoo-horned through, especially since the country is totally unprepared for it. The only people who are prepared are the ones about to receive privatised contracts from friends in the Government, or people ‘betting’ in the City. They have no interest in the destruction of the UK, including what happens to the NHS and social care. This is a betrayal of a phenomenal scale, and the Labour Party should keep a safe distance so it is not implicated in causing this disaster. The ‘shock’ of a no deal is of course will be exactly the sort of climate where the ERG or those in the ‘hard left’ can see themselves flourishing. It might even be a tempting climate for ‘Lexit’ to take root, but I don’t believe Lexit provides a solution either economically or socially, definitely not politically, to Brexit.
The only solution for me is for Labour to campaign on a platform in any general election to go back to the European Union, and to argue not only for a seat at the table of an influential trading bloc, but to ‘remain and reform’. I understand how tempting it might be for the UK to ‘go it alone’ and get contracts with Russia or China, but it is in reality hard to say that this would be easily possible. Having been a devotee of Tony Benn, and read all his diaries more than once, I am sympathetic to the Bennite view. But that’s where it ends. I think we can no longer within Labour waste any more time thinking Twitter arguments. There is an economic crisis to avert, but there’s more to Labour than a new radical model of economics even. Brexit will be more of a threat to welfare and social care, and the NHS, than even austerity has been, and there will certainly be no finality to the repercussions for Brexit for many years to come. It’s time for the ‘membership’ of Labour Party to stop thinking about Twitter campaigns, stop speaking to themselves, and put the country first.
I had first become interested in the language surrounding dementia in 2014, when I presented a poster on the G8 pitch, at the Alzheimer’s Europe conference in Glasgow.
At that point, I realised that sticks and stones could break my bones, but words could hurt me.
I have long since not attended any national or international conferences, not simply because I found the same topics being discussed in perpetuity, but because I felt the conferences were for an in-house cliques who were far more into massaging their own egos and putting themselves up in flash hotels than the reality of dementia.
But I later returned to the issue of language, in relation to stigma, in my second book on dementia ‘Living better with dementia’ published in 2015 by Jessica Kingsley Publishers. As my own mother lives with me, and as her dementia advances, I’ve genuinely found my own book to be a source of information and support. For example, only last night I was reading up on my own thoughts of the ‘sweet tooth’ in dementia and the neuroscientific evidence for why it occurs. Latterly, I’ve toyed with the idea of writing a cookbook for unpaid carers, living with limited resources including scarce money and time, of people living with dementia. I would love to work with someone who’s interested in this specialist field, such as a nutritionist or dietician, to help me.
I became physically disabled in 2007 after more than a month unconscious on the intensive care unit of a local hospital, where I was invasively monitored for acute meningitis. Although I subsequently read Goffman on stigma about a decade later, I had the misfortune to experience stigma first-hand. The sense of ‘otherness’ is something you experience if you’re in a wheelchair, and a London cab refuses to stop despite the cab having its yellow light on. Of course, I had direct experiences of ‘otherness’ as other medical professionals disowned and excluded me when I needed help the most – both in my alcoholism and in recovery. I am currently doing professional dilemma questions, and the knowledge that senior clinical people I worked with turned a blind eye, or did not know what to do and did not admit it, to my illness still frightens me.
As a result of this, I have a low threshold to calling out ‘otherness’, that is where you define people as different to you, and, more than than that, try to discredit them. This might include supporters of Brexit or not, Jewish or Muslim citizens or not, or even living with a long term condition. I don’t think the key to destigmatising stigma is by segregating people. At worst, this might include the ghettoization of people with dementia or mild cognitive impairment such that they all safely live in the same ‘dementia village’, to all intents and purposes ‘out of sight’ and ‘out of mind’. Care homes used to be criticised, by some, for potentially warehousing individuals if the prescription of chemical or physical restraints was frequently abused, similarly. This is not real integration and inclusion, in other awards appreciating the diversity of individuals, but actually lumping all people together with the same label.
For example, in ‘dementia friendly communities’, we don’t acknowledge individuals have different qualia of cognitive impairments, in memory, language or whatever, at various degrees of severity. We don’t discuss how the social determinants of health impact on the health and wellbeing of people, such as poverty or the shutting of day centres. We just clump all people together as ‘dementia’. This is not a million miles off of creating vast groups comprising unique individuals, such as ‘learning disabilities’ or ‘the elderly’.
Whilst the counter-argument is that identification of these groups of people means that their needs can be serviced, often the opposite is true. Recently, a paper has been published on identifying the most ‘frail’ people so that we can be aware that they are the most intense in resource allocation. But think about this carefully. This can mean that we use the information to discriminate actively against the most vulnerable – ‘equity’ and ‘justice’ are not necessarily compatible ethically.
Above all, I am scared how language is used to legitimise discrimination, ‘otherness’ and to embolden other people’s vulnerabilities and weaknesses.
I did a brief scan of some ‘offending’ words, and I compiled them into a table.
I have been much derided for talking about “assets” and “strengths” as well as “deficits”. For example, one person commenting on a piece I wrote in the Guardian remarked similar to, “We don’t need to worry about this patient lying on the operating theatre table with advanced pancreatic cancer. She has great teeth.”
But I strongly believe that it is not difficult to slip into the patronising ‘does he take sugar mentality?’ I don’t wish to turn the medico-legal concept of ‘paternalism’ into a “dirty word”, but, as for our experiences with individuals with special needs, it is a slippery slope to outright dehumanisation and depersonalisation.
I never really understood what it was like to lose your sight until I went blind in one eye last year – but this was surgically operated upon with success. Likewise, I think many of us think we won’t be the ones who get diagnosed with cancer or dementia. But the law of averages means that some of us will be.
And we should think about how “we” would feel if “other people” talked about “us” like that.
The actual reality has been bleak, apart for those for whom ‘dementia awareness’ pays off their mortgages.
In September 2018, the Guardian featured an article on the cuts to social care:
“Nearly all the austerity-era funding cuts to services supporting poor families have fallen in the most economically-deprived areas of England, potentially trapping them in a “downward spiral” of poverty, according to new research. Council areas in the north and Midlands, together with a handful of local authorities in London, have shouldered 97% of the reductions in town hall spending on working age social care, looked-after children and homelessness since 2011, the study says.”
The cost of the ‘Dementia Friends’ programme was always eye watering.
As this press release from 2012 provided,
“Launched the £2.4 million programme, led by Alzheimer’s Society and funded by the Cabinet Office and the Department of Health, to deliver the nation’s biggest ever call to action on dementia to create one million Dementia Friends by 2015.”
I still have deep reservations about ‘cloning’ millions of people to be ‘aware’ of dementia in such a pre-scripted formulaic way.
Take for example this script of how to conduct a ‘Dementia Friends’ information session which can be easily found on the internet. The approach leaves little room for any creativity and innovation by local people to promote awareness of dementia. If there are about 900,000 people in the UK with dementia, you would have thought that they would have had their own personal views of dementia they’d like to share.
But the truth is – this was a massive marketing exercise for the Alzheimer’s Society, with deeply unpleasant political motives. Dementia Friends was never delivered in a genuinely organic way as a social movement. A huge amount of money was put into ‘marketing dementia’ as this press release reveals. There was never any “empathy” as this recent piece from the Harvard Business Review on the topic of change suggested.
In all the intervening years, there has never been an independent report on the return of investment of this programme, despite many many calls for such an analysis of whether the millions of pounds invested ever had any return socially or otherwise.
Take for example the aims of the “marketing programme”:
What have been the tangible results of this? Do the public think or feel any differently about dementia? Has there been a greater sense of social connectedness between people with dementia, carers and others, despite the drastic cuts imposed through austerity in government policy? Has there been any significant upskilling of the workforce in health and social care in dementia?
What ‘dementia friendly’ means has always remained elusive.
It’s even to me, the full carer of a wonderful person – a mum who happens to live with dementia and who requires now full-time care.
It has never convincingly been presented as anything other than a better ‘customer experience’.
Take for example this claim from quite early on:
“When the dementia friends scheme was still in the planning stages, the aim was announced of signing up 200,000 people who, by doing so, would be making a pledge to become ‘dementia-friendly’ contact points for customers they encounter who are living with the condition. With the number of employees having confirmed their support already surpassing 400,000, however, it is clear that the programme is set to be a big success across the country.”
The five core messages of ‘Dementia Friends’ are not beyond reproach either.
Dementia is not a natural part of ageing.
Dementia is caused by diseases of the brain.
Dementia is not just about losing your memory.
It is possible to live well with dementia.
There is more to the person than the dementia.
As you get older, you have an increased chance of developing dementia. With the drive for dementia diagnoses, there has inevitably been more people who have misdiagnosed with dementia when in fact they did have ‘normal ageing’. We know dementia is caused by diseases of the brain, and it is not just about losing your memory – but it would have been sensible at this point to give a brief explanation of the other types of dementia, particularly for those below the age of 65. It’s simply not good enough to say ‘it’s not just memory’. I would never say, as a complete explanation, a ‘supermarket is not simply a delicatessen counter’. That statement provides no information about what a supermarket actually is. Likewise, the statements are consistently half-truths. It is, I am sure, possible to live well with dementia, but it’s also possible for the person with dementia and carer (and others) to suffer enormously, with the emotional pain of not recognising familiar people, not being able to do simple tasks like writing a cheque and so on.
There is more to the person than the dementia is a hollow campaigning slogan when delivered by advocates and charities who relentlessly do not embrace the issue of other social determinants of health, nor indeed any other comorbidities, but want everything to be viewed through the dementia campaigning focus. For example, a simple irregularity is the issue that dementia-friendly communities or behaviour should be friendly to all, unless you genuinely believe that people with dementia are sufficiently homogenous and do not live with any other diversity in their diagnosis or social determinants of health?
And my genuine reaction is “So what?”