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“Thought diversity“, I feel, is fundamentally in tune with what I feel about the ethos of living well with dementia: recognising what people can do, rather than what they can’t do.
This is particularly useful in one particular context. The general topic of thought diversity in the workplace recently has received some deserved attention. There are two important approaches in this context of performance management in the workplace: equality and diversity.
I am certainly not about to suggest what an employer should do; nor what a person who may be about to receive a diagnosis of probable young onset dementia might do. I am just going to think about how thought diversity could be used to produce an effective skills mix for the employer, so that any individuals with young onset dementia can still contribute to the full.
Equality tackles an imbalance where some people may be considered treated badly due to the effect that a protected characteristic has (such as age, sexual orientation, or race, for example); diversity is simply accepting that everyone is different. Legally, dementia can be defined as a disability under the guidance of the Equality Act (2010).
It is essential to recognise the functioning of the Equality Act (2010) for dementia. Disability is a “protected characteristic” under that statutory instrument. Prohibited conducts, like indirect or direct discrimination, are unlawful; reasonable adjustments must be made for disability. The Act specifically states that employees are under a duty to take reasonable adjustments to provide aids/ auxiliary services if these could alleviate any disadvantages and costs and not be passed on to the employee.
What is this equality?
But in political philosophy, the question has, in sophisticated circles, become “equality of what?”
As Anne Phillips describes in a paper for the London School of Economics:
“Two themes have become part of the common-sense in current thinking about equality.
The first is that defining equality in terms of outcome – equalising where people end up rather than where or how they begin – displays a distressing lack of sophistication.
Such a definition immediately begs the question of what we are seeking to equalise (income? happiness? welfare?), and seems to forget that measures to deliver equality on one of these metrics will deliver inequality on another.
Equalising resources notoriously overlooks the diversity of preferences and tastes: since what people want varies enormously, any strict division of the world’s resources will leave each of us with an excess of what we consider worthless and probably too little of what we really desire.
Yet if we turn instead to equalising people’s sense of well-being, we may end up giving more to the constitutionally dissatisfied than to the easily content. Defining equality in terms of outcome presumes an easy answer to the ‘equality of what?’ conundrum, gliding over complex issues of what equality means.”
The “equality of outcome“, for example, causes a particular controversy, arguably.
“Researchers concluded that equality of outcome was patronising, humiliating and embarrassing to minority groups. It could be socially divisive and evidently fuelled hostility and resentment in areas where prejudice previously did not exist as a serious social problem.”
An approach based on equality for young onset dementia
The basic accusation is that attempts for equality end up being rather artificial, but it is true that treating dementia as a disability to promote equality, arguably, must be a more useful starting point that a policy where citizens are merely “friendly” to people living with dementia with cognitive impairments such as problems in memory. Dementia is considered ‘young onset’ when it affects people of working age, usually between 30 and 65 years old. It is also referred to as ‘early onset’ or ‘working-age’ dementia. And it might appear meritorious for an employer to everything in his or power to keep a person with young onset dementia in a job, by providing ‘reasonable adjustments’ such as adequate signage, diaries or memory aids.
But is this approach based on equality necessarily the right approach?
It’s already conceded there’s a fair distance to go to make enforcement against disability discrimination offences a reality. Making goods and services easier for disabled customers has been a policy rumbling on for some time (see for example this document). Only last month, it was described yet again that access for disabled citizens to high street shops was “shocking”. The legal underpinning of this failure in equality is in contrast to the aspirational nature of ‘dementia friendly communities’ involving high street shops, such as in Fareham. In theory, it is all very well to say that an employee newly diagnosed with young onset dementia should be given reasonable adjustments as dementia is a known disability.
But there are some problems here. Some people with ‘soft symptoms’ may not wish themselves to be labelled with a disability, or a diagnosis, even if this means that they might be able to access certain finances. Also, in the majority, people with cognitive problems, who later go onto receive a diagnosis of young onset dementia formally, leave formal employment long before they receive that formal diagnosis (at which point the reasonable adjustments would have kicked in). We all know of employers who would really not want the bother of having to make reasonable adjustments, either for a person developing a dementia. And we know that all sorts of excuses tend to crop up prior to appointment of some employees in the first place. Somebody applying for a job, who is open about the fact he may be developing an early dementia, is unlikely to receive a sympathetic hearing in shortlisting.
But hold on a minute. Is it actually the employers’ fault?
The situation is very serious.
Kate Swaffer describes, through the construct called ‘prescribed disengagement‘ she was the first in the world to articulate, how people who have received a diagnosis of young onset dementia are, rather, actively encouraged effectively to give up by professionals in the health and care sectors. Work engagement, with some focused attention, could conceivably work though the strong determination of employers. For example, Robertson and colleagues (Robertson, Evans, and Horsnell, 2013) recently described an innovative demonstration program called “Side by Side” that was initiated to assess the feasibility of supported workplace engagement for people with younger onset dementia. This is truly laudable. People with young onset dementia, even if they have been demoralised by a cultural phenomenon of ‘prescribed disengagement’, might instead be encouraged to pursue positions in their current place of employment playing on their cognitive strengths. And this is recognised in ‘thought diversity’.
Is #thoughtdiversity a better option?
According to Deloitte’s excellent paper on ‘Thought Diversity’, acknowledging different thinking styles or cognitive diversity can beneficial for organisations to ‘hire differently, manage differently, promote differently’. In other words, employees can be matched up to tasks according to their cognitive strengths, and this includes people living in early stage young onset dementia. Such an approach would be more positive, beneficial for the employer and employee, focusing on what a person living well with young onset dementia can do, rather than what he or she can’t do. Such a workforce, it is anticipated according to Deloitte, might show greater resilience, and also be far less prone to ‘group think’.
I feel we do need to think ‘outside the box’, innovatively, to think how we get the best out of people. People who are about to receive a diagnosis of dementia may wish to stay in employment for as long as possible, as that is where friends are made, and of course the source of income comes at a critical time when there might be other commitments such as family, a mortgage or pension. Human resources will in time need better tools for identifying different cognitive styles. There will be in any team people who are more suited to remembering things, people who are good with words, people who are good with planning. Cognitive assessments, whether relatively informal psychometric tests for different cognitive styles or more detailed, might be able to identify what individuals are good at, such that a team might as a whole consist of the ‘right skills’ and might display cognitive diversity. This would, I feel, be an altogether more constructive to approach the issue of employment for people with young onset dementia, based more on diversity than legal equality.
But I do think both employer and employee need to know that these legal equality rights do exist, as they are potentially extremely powerful indeed.
Robertson, J., Evans, D., Horsnell, T. (2013) Side by Side: a workplace engagement program for people with younger onset dementia, Dementia (London), 12(5), 666-74.
It’s sometimes hard to see the big picture in the policy of England regarding dementia.
I don’t mean this in terms of the three key policy strands of the strategy, which is currently the Prime Minister’s Dementia Challenge. This extra layer was added onto the English dementia strategy, “Living well with dementia”, from 2009-2014.
There will be a renewal of this strategy next year. We currently don’t know what Government will be in office and power in 2015. But I am hoping the overall direction of travel will be a positive one. I would say that, wouldn’t I?
There are 3 dementia challenge champion groups, each focusing on 1 of the main areas for action: driving improvements in health and care, creating dementia friendly communities and improving dementia research.
But it is in my political philosophy to encourage a pro-social approach, not a fragmented one.
I’d like to see people working together. This can all too easily be forgotten in competitive tendering for contracts.
And things can be just as competitive in the third sector as for corporates.
This is the clinical lead for dementia in England, Prof Alistair Burns, who has oversight over all these complicated issues.
But we need to have a strong focus for the public good, especially as regards looking after the interests of people living with dementia, and their closest including all caregivers. State-third sector initiatives can work brilliantly for particular outcomes, such as encouraging greater sharing of basic information about dementia, but all concerned will hopefully feel that the people whose interests we want to protect the most benefit from a plural space with many stakeholders.
There is definitely a huge amount which has been achieved in the last few years. I do definitely agree with Sally Greengross, Chair of the All Party Parliamentary Group for dementia, that we should really take stock of what has worked and what hasn’t worked so well in the last five years, in our wish to move forward.
I say this, as it has come to my attention while reviewing the current state-of-play in policy and in research that there are potentially problematic faultlines.
1. One is diagnosis.
On the one hand, some people feel that we are under diagnosing dementia, and that there are people languishing in England waiting for a diagnosis for weeks or months.
Chris Roberts, himself living with a dementia, and a greater advocate for people living with dementia, often warns that it is essential that, despite the wait, that the diagnosis is correct.
I know of someone else in the USA who has battled on for years while waiting for a diagnosis of dementia, despite having symptoms of dementia.
On the other hand, there are concerns, particularly if teams in primary care are financially incentivised for doing so, that there might be a plethora of over diagnosed cases.
The concern here is that there might be alternative interests for why such people might be diagnosed, such as being recipients of compounds from drug companies which attach to proteins in the brain, and which might be useful in diagnosing dementia.
Or we are building a ‘new model army’ of people who are ageing, but being shoehorned into the illness model because of their memory problems?
2. Another is potential ‘competition’ between dementia charities.
Essentially, all dementia charities in England want the same thing, and will need to attract an audience through various ‘unique selling points’ through that awful marketing terminology.
But in the next few years we may see commissioning arrangements change where the NHS may involve the third sector doing different complementary rôles, such as advising and providing specialist nursing, in the same contractual arrangement.
The law might force people to work together here.
3. Another is the ‘cure versus care’ schism.
This debate has accelerated in the last few years, with the perception – rightly or wrongly – that cure – in other words the drive to find a magic bullet for dementia – is vying for attention with care. This narrative has a complicated history in fact, in parallel with moves in the US which likewise have overall seen a trend towards some people wishing for a ‘smaller state’.
But claims about finding a cure for dementias have to be realistic, and, while comparisons can be made with HIV and cancer about the impact of a cure has for absolving stigma potentially, such a debate has been done incredibly carefully.
For example, attention for cures and collaboration between Pharma and ‘better regulation’ constitute a diversion of resources away from care, potentially. In the NHS strategy for England, with social care on its knees, a drive towards personalised medicine on the back of advances from the Human Genome Project can end up looking vulgar.
I’ve also seen with my own eyes how the ‘cure vs care’ schism has seen different emphases amongst different domestic and international dementia conferences, with some patently putting people with dementia in the driving seat, and some less so (arguably).
4. Another is the exact emphasis of ‘dementia friendly communities’.
It is impossible to object to the concept of inclusivity and accessibility of communities, with recognition of the needs of people living with the various dementias.
But the term itself is possibly not quite right; as Kate Swaffer says, a leading international advocate on dementia, you would never dream of ‘black friendly communities’ or ‘gay friendly communities’ as a term.
Another issue is what the precise emphasis of dementia friendly communities is: whether it is an ideological ‘nudge’ for companies and corporates to enable competitive advantage, or whether it is driven by a more universal need to enshrine human rights and equality law.
As Toby Williamson from the Mental Health Foundation mooted, the need for an employer to make reasonable adjustments for cognitive disAbility is conceptually and legally is actually the same as the need for an employer to build an access ramp for a person who is in a wheelchair and physically disabled?
There can also be a problem in who wishes to be “the dominant stakeholder”. Is it the person with dementia? Or unpaid caregiver? Or paid carer? Or professional such as CPN, physio, OT, speech and language therapist, neurologist, physician or psychiatrist? Is it a dementia adviser or specialist nurse?
If we are to learn the lessons from the Carers’ Trust/RCN “Triangle of Care”, it is essential to learn from all stakeholders in the articulation of a personalised care and support plan? I feel this is important in whole person care if we are to have such plans in place, which recognise professional pro-active clinical help, in trying to assist in avoidable admissions to hospital.
But here we have to be extremely careful. An admission to hospital or appearance at A&E should not always be sign of ‘failure’ of care in the community.
5. Yet another source of division is that we all do our own things.
This is problematic, if we do our own things. We end up being secretive about which people we’re talking to. Or which conferences we’re going to.
Or if countries don’t talk to each other, even if they have similar aims in diagnosis, and post-diagnostic care and support (including the global dementia friendly communities policy). Or if we don’t share lessons learnt (such as, possibly, the beneficial impact of treating high blood pressure on dementia prevalence in one country).
Or if certain people become figureheads in dementia. But no man is an island.
I still feel that there’s a lot more that unites us than divides us.
Anyway, I’ll leave it to people on the frontline, and in communities, much more able than me, to work out what they want.
The World Dementia Council will be much stronger from democratic representation from leaders living with dementia
There is no doubt the ‘World Dementia Council’ (WDC) is a very good thing. It contains some very strong people in global dementia policy, and will be a real ‘force for change’, I feel. But recently the Dementia Alliance International (DAI) have voiced concerns about lack of representation of people with dementia on the WDC itself. You can follow progress of this here. I totally support the DAI over their concerns for the reasons given below.
“Change” can be a very politically sensitive issue. I remember going to a meeting recently where Prof. Terence Stephenson, later to become the Chair of the General Medical Council, urged the audience that it was better to change things from within rather than to try to effect change by hectoring from the outside.
Benjamin Franklin is widely quoted as saying that the only certainties are death and taxes. I am looking forward to seeing ‘The Cherry Orchard” which will run at the Young Vic from 10 October 2014. Of course, I did six months of studying it like all good diligent students for my own MBA.
I really sympathise with the talented leaders on the World Dementia Council, but I strongly feel that global policy in dementia needs to acknowledge people living with dementia as equals. This can be lost even in the well meant phrase ‘dementia friendly communities’.
Change can be intimidating, as it challenges “vested interests”. Both the left and right abhor vested interests, but they also have a strong dislike for abuse of power.
I don’t mean simply ‘involving’ people with dementia in some namby pamby way, say circulating a report from people with dementia, at meetings, or enveloping them in flowery language of them being part of ‘networks’. Incredibly, there is no leader from a group of caregivers in dementia; there are probably about one million unpaid caregivers in dementia in the UK alone, and the current direction of travel for the UK is ultimately to involve caregivers in the development of personalised care plans. It might be mooted that no one person living with dementia can ever be a ‘representative’ of people living with dementia; but none of the people currently on the panel are individually sole representatives either.
I am not accusing the World Dementia Council of abusing their power. Far from it, they have hardly begun to meet yet. And I have high hopes they will help to nurture an innovation culture, which has already started in Europe through various funded initiatives such as the EU Ambient Assisted Living Joint Programmes (“ALLADIN”).
I had the pleasure of working with Prof Roger Orpwood in developing my chapters on innovation in my book “Living well with dementia”. Roger is in fact one of the easiest people I’ve ever worked with. Roger has had a long and distinguished career in medical engineering at the University of Bath, and even appeared before the Baroness Sally Greengross in a House of Lords Select Committee on the subject in 2004. Baroness Greengross is leading the All Party Parliamentary Group on dementia, and is involved with the development of the English dementia strategy to commence next year hopefully.
Roger was keen to emphasise to me that you must listen to the views of people with dementia in developing innovations. He has written at length about the implementation of ‘user groups’ in the development of designs for assistive technologies. Here’s one of his papers.
My Twitter timeline is full of missives about or from ‘patient leaders’. I feel one can split hairs about what a ‘person’ is and what a ‘patient’ is, and ‘person-centred care’ is fundamentally different to ‘patient-centred care’. I am hoping to meet Helga Rohra next week at the Alzheimer’s Europe conference in Glasgow; Helga is someone I’ve respected for ages, not least in her rôle at the Chair of the European Persons with Dementia group.
Kate Swaffer is a friend of mine and colleague. Kate, also an individual living with dementia, is in fact one of the “keynote speakers” at the Alzheimer’s Disease International conference next year in Perth. I am actually on the ‘international advisory board’ for that conference, and I am hoping to trawl through research submissions from next month for the conference.
I really do wish the World Dementia Council well. But, likewise, I strongly feel that not having a leader from the community of people living with dementia or from a large body of caregivers for dementia on that World Dementia Council is a basic failure of democratic representation, sending out a dire signal about inclusivity, equality and diversity; but it is also not in the interests of development of good innovations from either research or commercial application perspectives. And we know, as well, it is a massive PR fail on the part of the people promoting the World Dementia Council.
I have written an open letter to the World Dementia Council which you can view here: Open letter to WDC.
I am hopeful that the World Dementia Council will respond constructively to our concerns in due course. And I strongly recommend you read the recent blogposts on the Dementia Alliance International website here.
Even identical twins act differently.
This is because they are shaped by the environment in unique ways, even if they have exactly genetic sequence as the blueprint which designed them.
It therefore cannot be any surprise that no two individuals in society are in the same, as you can easily witness with the range of opinions on your timeline on Twitter.
A person with a dementia might be very different to another person with a dementia.
There are a hundred different causes of dementia, tending to affect people in different age groups in distinct ways at different rates? Let’s pick one type of dementia, the most common cause, Alzheimer’s disease.
A 83 year-old with Alzheimer’s disease might have a number of different problems, for example memory – or even with problems in planning, aspects of language, or behaviour.
And of course it’s pretty likely that 83 year-old might be living with another different condition too, such as heart disease.
Your perception of that 83 year-old might vary from your next-door neighbour, according to, perhaps, your own personal experiences of dementia, good, bad or neither.
So, in raising awareness over the uniqueness of individuals through “Dementia Friends” or “Dementia Champions”, there’s an inherent contradiction.
How do we build ‘dementia friendly communities’, given one’s desire to embrace diversity?
I have for some time explained elsewhere why I think the term is a misnomer. I don’t see the point of “asthma friendly communities” or “chronic demyelinating polyneuropathy communities”, worthy though they are.
I think when you pick off any of the ‘protected characteristics’ in the Equality Act, such as ‘disability’, ‘sexual orientation’ or ‘age’, you have to be careful about not inadvertently homogenising groups of people, worthy though the cause of ensuring that they do not suffer any unfair detriment is.
It could be that people in the early stages of Alzheimer’s disease, due to how the condition tends to affect the brain, could have particularly problems with spatial memory or navigation. Therefore, it would be desirable perhaps to have places with clear landmarks such that such individuals can navigate themselves around.
But take this situation to an extreme. Would society feel comfortable with people with dementia having their own cafés?
The story of Rosa Parks is well known.
After working all day, Parks boarded the Cleveland Avenue bus around 6 p.m., Thursday, December 1, 1955, in downtown Montgomery. She paid her fare and sat in an empty seat in the first row of back seats reserved for blacks in the “coloured” section.
The bus driver moved the “coloured” section sign behind Parks and demanded that four black people give up their seats in the middle section so that the white passengers could sit.
Rosa did not move.
A legitimate learning objective of ‘dementia awareness’ sessions is to think about what a person with dementia might or might not be able to do.
But if we then meet this learning objective, that people with dementia are all unique, we should steer away from stereotypes that people with dementia act ‘a certain way’.
This, I personally believe, is a big failing of this ‘dementia friendly communities awareness video’.
This could be the video from any corporate. The point is that the video contains very familiar concepts and memes which can be marketed very easily.
I have reviewed the development of the policy of ‘dementia friendly communities’ in the penultimate chapter of my book ‘Living well with dementia’.
The description of “dementia friendly communities” given by the Alzheimer’s Society is provided as follows:
“The dementia friendly communities programme focuses on improving the inclusion and quality of life of people with dementia… In these communities: people will be aware of and understand more about dementia; people with dementia and their carers will be encouraged to seek help and support; and people with dementia will feel included in their community, be more independent and have more choice and control over their lives.”
This definition doesn’t make sense to me as it ignores networks – networks (including social networks such as Facebook and Twitter) are particularly important to those whose physical or mental health might pose formidable barriers to being physically in any one place in a community.
But when you ask “what is a dementia friendly community?” inevitably the question becomes re-articulated “what constitutes a community, and what counts as it being ‘friendly’ to ‘dementia’?”
And immediately you see the problems. How large is a community? Or put another way what constitutes the boundaries of the community? In theory, a community could be members of a part of the Lake District, or the Square Mile. Being ‘friendly’ demands the question ‘how long is a piece of string’? Without some clarity, this construct is ‘motherhood and apple pie’ and a perfect tick-box vehicle for commissioners to demonstrate that they’ve done something about “dementia friendliness”.
But simultaneously shutting down a day centre will immediately take out any feel good factor of commissioning decisions, leaving people with dementia sold down the river.
And which dementia? There are about a hundred different causes of dementia, the most common one being globally Alzheimer’s disease, characterised typically in the early stages with real problems with learning and encoding new memories (and subsequent retrieval).
So it’s conceptually possible to talk about dementia-friendly communities where you put up signage everywhere so people with Alzheimer’s Disease, who have spatial navigation difficulties, can get a bit of help.
But not all memory problems are dementia, and not all dementias present with memory problems.
But what those people with frontal dementia who have perfect memory, but who present with a slow change in behaviour and personality according to their closest ones?
How should we make communities ‘friendly’ to them?
The policy construct immediately experiences an obstacle in that it talks about ‘dementia’ as one great mass, an error previously made for ‘the disabled’. But this criticism is of course by no means fatal – as conventional communities also contain a huge range of people of all different characteristics, anyway. But is then the concept too broad as to be meaningful, such as “male friendly communities”?
Something which Kate Swaffer, an Australian who has significant experience in campaigning for advocacy for people with dementia, and who herself lives with dementia, recently shared on Twitter was this eye-catching caption.
And you see the difficulty? How do we design a ‘community’ which is ‘friendly’ to ‘dementia’, if you believe like me that once you’ve met one person with dementia, you’ve met one person with dementia?
It’s clearly impossible to legislate for someone to be ‘friendly’ to another person in a society, however loosely defined, but it is worth at least acknowledging the existant law.
You can’t have a policy that discriminates against a group of people to their detriment, with that group of people defined by a ‘protected characteristic’ under equality law in this jurisdiction. Dementia can fall under this protected characteristic definition, as legally it can come under the definition of disability; any discrimination of disabled people is unlawful.
But you can easily argue that the policy fosters a spirit of solidarity far beyond rigid compliance with the law. Such solidarity of course seems somewhat at odds with the backlash against any form of state planning from this government and previous governments.
I’ve thought long and hard about the need to try not to dismiss worthy initiatives in dementia policy. For example, whilst I am concerned about the error rates of ‘false diagnosis’ of people with dementia, I would be equally concerned if NHS England did nothing to try to identify who the undiagnosed with dementia currently are.
Likewise, my natural instinct is to think about whether the charity sector is distorted with initiatives such as ‘Dementia Friends’. According to the Government’s website, by 2015, 1 million people will become Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England, and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon. Linking the global policy of dementia friendliness to one charity, when other similar initiatives currently exist (such as the Purple Angels, Joseph Rowntree Foundation, University of Stirling, WHO, and RSA), means that many dementia charities may get unfairly ‘squeezed’.
I do, however, intuitively and desperately wish this policy to succeed. For example, at my stall yesterday at the SDCRN 4th Annual Conference (the Scottish Dementia Clinical Research Network), a person called Hugh actually bothered coming up to me to tell me how much being a ‘Dementia Friend’ meant to him. He talked about friends of his who were ‘Dementia Champions’. He spoke with tremendous affection about his late wife had lived with dementia for eight years, and the importance of community work to him.
And it is very difficult to deny that initiatives such are this are truly wonderful.
A real concern, though, is that by conceding one is building a ‘dementia friendly community’, even with all the best will in the world, the term itself doesn’t for me suggest or promote real inclusivity. It still sadly implies a ‘them against us’. I think I have this attitude because I’m physically disabled, and I would balk at the term ‘disabled friendly community’. It’s incredibly important that this policy is not London-driven friendly communities with more than a twang of tokenism.
I am therefore leaning towards a viewpoint expressed by Simon Denegri, Chair of INVOLVE, and NIHR National Director for Public Participation and Engagement in Research:
— shibley (@legalaware) March 24, 2014
And surely you’d want businesses and corporates to be ‘dementia friendly’? But which corporates, and why dementia? Surely you’d want them to be friendly with rare muscle wasting diseases, or cancer, for example? Shouldn’t carers get their own “carers friendly communities”?
This poses big problems for our perception of inclusive communities.
Alastair shared a lovely picture which sums up the problem for me.
— Alastair Somerville (@Acuity_Design) March 27, 2014
You can easily see why certain corporates such as banks might wish to help out with this policy, because people with dementia can be at risk of financial abuse, but is this a genuine drive to help people with dementia or is it a pitch to secure competitive advantage like ‘ethical banking’.
Apart from isolated stories such as of dedicated no-hurry lanes in supermarkets, for example, surely one would have expected supermarkets to have pulled out all the stops with adequate signage everywhere? Many large supermarkets have about thirty lanes where it’s easy for the best of us to get lost. I don’t think I’ve ever been to a dementia-friendly supermarket where the signage would be of a good enough quality to prevent a person with mild Alzheimer’s Disease becoming spatially disoriented.
“Dementia friendly communities” lend themselves easily to ‘diversity marketing’, however. Diversity marketing is a marketing paradigm which sees marketing (and especially marketing communications) as essentially an effort in communication with diverse publics. As an acknowledgement of the importance of diversity marketing is that AT&T Inc. has a post for this discipline at vice president level. It is reported that, starting in the 1980s, Fortune 500 companies, government agencies, universities and non-profits organisations began to increase marketing efforts around diversity, according to Penn State University.
I asked my friends on Facebook whether there was anything particular ‘immoral’ about this diversity marketing in relation to dementia friendly communities, and their responses were as follows.
In other words, there is no ‘right answer’.
It’s clear to me that this policy, as it is currently being delivered, needs much greater scrutiny in terms of where the benefits have been, and for whom.
In many ways, the website is likened to the ‘shop window’ of the organisation. It is the visible part of an organisation, which is vital for attracting new stakeholders. It also acts a pivotal part of the knowledge sharing mechanism. Furthermore, it can portray a strong brand, if it has a robust brand identity, which ensures loyalty amongst its audience.
The new websites of BPP and the Bar Standards Board are both worth looking at. BPP is one of the most important professional educational providers especially in law and business-related disciplines. The Bar Standards Board is pivotal in regulating the Barristers.
I like the BPP website very much as it is visually very attractive. In addition to presenting its formidable strength in professional subjects such as accountancy, banking and finance, law, leadership and personal development, I thought that the section on disability support for students was truly excellent. As a student who has studied the GDL at Waterloo, and the MBA at St Mary Axe, I am now in a third centre, Holborn. All there sites have treated me as a person who feels valued as part of a wider community, and have gone out of their way to support me reach the highest professional standards in my postgraduate studies. I can only compare this to my legal training to the College of Law, for my Masters of Law, which I felt was exceptional too. I can only compare this to Cambridge University where I did other undergraduate studies and my Ph.D., but the focus on teaching at BPP and the College of Law in my personal belief is much more focused and impressive.
Likewise, I really like the new Bar Standards Board website. I have student enrolment with the SRA, but again the presentation of this website is immaculate. It effortlessly presents various issues such as the Code of Conduct, recent consultations (including the BCAT proposals), specialist regulatory requirements (including equality and diversity, both extremely important subjects to disabled individuals like me), and professional conduct for barristers. Its layout is uncluttered, and not overwhelming at all.
"Responsible reform": Sharp criticism of the legitimacy of welfare reforms from international and domestic law
Embargoed for publication 10:00 9 January 2012
A new Report on the proposed changes to Disability Living Allowance in a team led by Dr S J Campbell, Sue Marsh, Kaliya Franklin and Declan Gaffney, raises fresh concerns about the legitimacy of the new welfare reforms for England and Wales. This Report provides much hope to disabled law students, as the Report paves the way for a comprehensive legal challenge to the Welfare Reform Bill for alleged breaches of international and domestic law, especially as regards discrimination, human rights and equality.
The new Report cites specific examples of existing concerns about the legitimacy of such reforms under international and domestic law, but the clarity of new precise statistics. At present, the rights of disabled citizens are protected by a range of domestic and international legislation, including the Universal Declaration of Human Rights, the International Covenant on Economic Social and Cultural Rights (ICESCR), the UN Enable Convention on the rights of people with disabilities, Articles 28, 26 & 4 (UNCRPD), Disability Discrimination Act 1995, the Human Rights Act 1998, and the Equality Act 2010. Under Equality Act 2010, it is illegal to treat one group of disabled people less favourably than another. If removal of DLA from people with so-called “lesser needs” removes or limits those choices, the UK Government may find itself in breach of their human rights obligations.
The Report provides troublesome reading for the Government regarding their “equality assessment”:
The Government Equality Assessment recognises that some disabled people will lose their entitlement to DLA. We dispute the Government’s claim that losing DLA will increase disabled people moving into work. We suggest the opposite. During the consultation many disabled people reported that losing their DLA would leave them unable to continue working, most often citing travel costs. !is misunderstanding underlines the Government’s deep misconception of DLA as an out-of-work benefit rather than a benefit which enables work for those disabled people who are capable of it.
This Report was entirely written, researched, funded, and supported by sick and disabled people, their friends and carers, as well as thousands more supported it through social media. It is report is a comprehensive presentation of the most relevant evidence available on Disability Living Allowance (DLA) and the proposals to replace it with a new bene?t, Personal Independence Payments (PIP). It gathers together existing information and analyses over 500 group responses to the Government’s Response to Disability Living Allowance reform (obtained under FOI request 1989). That the Report was so comprehensively produced with the relative lack of funds normally given for such exercises is a touching testament to the commitment of people genuinely distressed about this.
The Report’s authors argue that “reform must be measured, responsible and transparent, based on available evidence and designed with disabled people at the very heart of decision-making“. The authors unfortunately concluded that there was a clear indication that this had not been the case, and respondents to this particular consultation repeatedly warn that plans for PIP may be in breach of some or all of these. Overwhelmingly, they found that disabled people do not agree that there is a need for an entirely new bene?t. It was clear to them that whilst disabled people do support some reform of DLA they do not want an altogether new bene?t. The respondents believed it is a costly irrelevance during times of austerity. However, the Report provided that, “Disabled people are clear and emphatic – keep DLA and reform the existing bene?t.”
The Report finds that:
It was felt that people with mental health disabilities would be disproportionally affected by these proposals. This was deemed to be because they would suffer from the type of assessment proposed which would perform poorly at assessing fluctuating conditions, so called invisible disabilities, people with poor communication skills and people who might be unable to communicate changes of circumstances, all of which apply in particular to people with mental health disabilities. Furthermore people with mental health disabilities are disproportionally represented among those receiving lower rate DLA and are considered to be the most likely to suffer from any cuts.
The Report finds that:
Ironically it was felt that disabled people would be negatively affected by these proposals. Due to cuts of 20% there would be a significant loss of income to large numbers of disabled people who would lose valuable support. It was also reported that some might be unable to continue working and others would be unable to continue socialising. It was felt that there could also be a negative impact on their health and wellbeing. It was suggested that there might be a contravention of human rights in these proposals.
Crucially, this Report puts another nail in the coffin for the proposed argument that the the proposed Welfare Reform Bill is consistent with other sources of domestic and international law. This has already begun to be an area of close scrutiny.
Extracts from other recent documents are provided below.
The Welfare Reform Bill was introduced in the House of Commons on 16 February 2011 and was brought from the House of Commons to the House of Lords on 16 June 2011. The Parliamentary Under-Secretary of State and Minister for Welfare Reform, Lord Freud, has certified that, in his view, the Bill is compatible with Convention rights. The Bill completed its Committee stage in the House of Lords on 28 November and its Report stage is scheduled for 12 December.
THE LEGAL STATUS OF THE RELEVANT STANDARDS
1.21 Before considering the specific provisions of those treaties which are relevant, we think it is important to point out the different nature of the legal obligations imposed on the State by the European Convention on Human Rights on the one hand, and by human rights treaties such as the ICESCR and the UNCRC on the other.
1.22 All human rights treaties impose legal obligations, but the precise nature of those obligations differs. ECHR rights are the archetypal legally enforceable rights, fully justiciable by courts and capable of protection by legal remedies. Rights such as the right to social security and the right to an adequate standard of living, on the other hand, are subject to progressive realisation and, as such, are less susceptible of judicial enforcement. In our view, in any parliamentary democracy it is the democratic branches of the State, that is, the Government and Parliament, which should have primary responsibility for economic and social policy, in which the courts lack expertise and have limited institutional competence or authority.
1.23 It follows, from this difference in the nature of the legal obligations imposed by the ECHR and by other human rights treaties, that political accountability for compliance with the UK’s human rights commitments under the UN human rights treaties is in practice even more important than legal accountability. Parliament therefore has a key role to play in scrutinising legislation to secure compliance with the positive obligations and minimum standards to which the UK has committed itself in those treaties.
… 1.35 We are disappointed by the Government’s failure to carry out any detailed analysis of the compatibility of the proposals in the Bill with the UK’s obligations under the UNCRC, the ICESCR and the UNCRDP. The legal effect of these human rights obligations in the UK is different in kind from the legal effect of Convention rights, which are given effect in our national legal system under the Human Rights Act, but they are nevertheless binding obligations in international law and the Government should be able to demonstrate that they have considered the compatibility of legislative proposals with those obligations. We have commended a number of human rights memoranda from departments in the past which have done precisely that. We remind departments of this Committee’s expectation in this respect, which is explicitly referred to in the Cabinet Office Guide to Legislative Procedure.
This other published document also provides disturbing reading for those who observe the Rule of Law:
The proposals recognise the need to support those ‘who face the greatest challenges to leading independent lives’ but the overview impact assessment concludes that this may mean a reduction in support for some people. Whilst the stated intent to focus on those facing the greatest barriers to independent living is welcomed by the Commission, our view is that this aim does not justify and will not be achieved by putting targets in place to reduce the number of DLA recipients. It is critical that the assessment is about the individual and is not subject to targets or quotas based purely on reducing the number of DLA claimants. The Commission is concerned about the impact this could have on individuals’ standard of living, and could be counter-productive to government policies and initiatives to overcome barriers to work.
The Report’s authors must be congratulated on a comprehensive piece of work, on behalf of law students. That the Welfare Reform Bill may not be above the international or domestic “rule of law”, especially in relation to discrimination, equality or human rights, will give much need hope to disabled law students.
In the final three months of this year, I wrote more about psychometric testing (for example in the proposed BCAT and psychometric tests for training contract applications), human rights (for example the future of the Human Rights Act as discussed in a meeting of ALBA at the Inner Temple), and book reviews (for example on affect and legal education and happiness).
However, in these three months, I did become very interested in disability issues, accessibility and inclusivity.
The BPP Legal Awareness Society published its timetable for meetings to be held at the BPP Business School, St Mary Axe. We held all these meetings successfully in October – December 2011, including flotations, debt finance, international arbitration and joint ventures.
In October, I started blogging, in addition, for ‘Legal Cheek‘, an alternative blog look at the legal education and legal life in general. I wrote an article outlining my feeling that disability is the legal profession’s white elephant.
In this article, I argued that embracing disability was a good way of improving the quality of law schools.
All law schools deserve to be scrutinised very carefully in their response to the government white paper entitled, ‘Students at the heart of the system’, over the issue of whether disabled students are seriously disenfranchised. The formidable white paper, which was published in June, sets out proposals for a higher education sector which is sustainably funded, delivers a “better student experience”, and contributes fully to the efforts to increase social mobility. The ability of a disabled student to get a job is a massively significant factor in that individual’s social mobility; virtually all individuals do not aspire to sustain themselves through the Disability Living Allowance (DLA) itself. An adverse effect of the legal aid cuts may be to put off disabled applicants from applying for the DLA. Good law schools will wish to embrace theNational Student Survey, and participate in it to the full.
In November, I argued in an article for ‘Legal Cheek’ that the term ‘diversity’ is an unhelpful one, not least because it means different things to different people. My conclusion was follows:
I believe that an useful first-step in advancing the diversity debate would be to phase out the word ‘diversity’ from the terminology, because, far from encouraging individual differences, clumping people together – inappropriately – inadvertently abolishes key individual differences.
Continuing the theme of disability, I developed the argument that law schools could take practical steps to make the wellbeing of disabled students much better:
The agenda for disabled law students under the government’s new framework is very much set by the law students. One way of getting involved is through the National Union of Students’ recently-launched petition calling for the establishment of a national advocacy service for disabled students (disabilities usually include long-term illnesses, mental-health conditions and specific learning difficulties such as dyslexia). In fact, if you’d like to set up your own disabled students’ group, you can email them for advice:email@example.com.
Still, I also feel it is up to the individual learning provider to be pro-active in responding to what disabled law students aspire to. At the bare minimum, they can simply comply with the white paper. But learning providers which wish to add social value may wish to do more to understand what disabled students aspire to and are legally entitled to. Certainly, it would reflect well on them to do so.
Meanwhie, back on the LegalAware blog, I was becoming acutely aware that the overlap between law and politics was becoming much closer. The legal aid cuts agenda remained at the front of my mind:
‘Sound off for justice’ and ‘Justice for all’ maintain that their campaigns are not political. However, senior people I talk to in law centres in London come to a conclusion that it is not possible to divorce politics from legal aid funding. Poverty unfortunately is political, as the Shadow Attorney-General, Emily Thornberry MP, suggested yesterday on BBC’s ‘Any Questions’. It happens that access-to-justice could disproportionately affect people on the basis of their income, in that cases of access-to-justice could become much harder to obtain for poorer people for certain problems. With many law centres set to shut down altogether, the legal services for immigration, housing and asylum, and welfare benefits, look set to be affected. The question is whether the poor will suffer disproportionately. Rich people will possibly be able to afford superinjunctions as before, as the evidence that the top 1% of the population have been affected substantially by the recession is lacking. This top 1% includes some (at least) well-paid lawyers in London.
However, colleagues of mine found it hard to discuss the political issues in an open way, but the funding of legal aid had unfortunately become a political isssue.
Whatever – I personally think all legal practitioners should be given support, acknowledging that funds are limited. but funding bodies will have to prioritise unfortunately. In fact, a focus on funding may have the beneficial effect of providing better precision to all stakeholders in their strategy and core competences of their legal services, whatever sector they are in. However, fundamentally, I most agree with the observation that, at this late stage, arguing over a sense of entitlement is totally unhelpful. It is desperately important that we fight until the end for our common purpose in protecting legal aid. I would find it very hard to support law centres if they wished to campaign at the expense of CABx or other stakeholders, but they should think about how they differ from other stakeholders when applying for London Borough grants for community investment or structural upkeep, I feel.
By December, I had come to the conclusion that a more radical solution had to be developed to improve access to the legal profession
It’s my fundamental belief that people are written off far too early in England and Wales at present. We have an education system that seems to punish certain bright people who fail to get perfect grades at GCSE and A-level. It doesn’t help that students are forced to make very specialised educational choices for their 16-18 studies at an age where they may not be totally convinced about their career choices.
I feel that the education and assessment environment needs an overhaul to prevent recruiters from using arbitrary academic achievement to ‘sift’ candidates out of sheer laziness. Talented people are being deprived access to jobs in the legal profession. Instead, we should be encouraging people to learn how to learn for themselves, and know where to find relevant information.
To this end, I feel law firms should be able to hire people straight out of school, if they wish, but also to take advantage to a greater extent of the enormous breadth of experience from other spheres of life mature candidates might offer. Unfortunately, we’re not in a place where that sort of flexibility can happen.
What will the future hold? 2012 begins soon.