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Can #thoughtdiversity promote employment for persons living well with young onset dementia?
“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 legislation
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.
Reference
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.
Culture and diversity in living well with dementia
This is a very important chapter to me.
Culture and diversity considerations are hugely pervasive in all of English dementia policy: from the point of timely diagnosis and throughout the course of post diagnostic support.
These are the academic journal references I wish to include in my chapter for my book ‘Living better with dementia: champions for enhanced friendly communities”.
Please do let me know of any initiatives, projects, published papers or reports that you should like me to include in this chapter.
What is listed below is only a start. It does include blogposts, which I intend to include too.
This chapter is of course hugely relevant to global dementia policy.
Aminzadeh F, Byszewski A, Molnar FJ, Eisner M. Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers’ perspectives. Aging Ment Health. 2007 May;11(3):281-90.
Botsford J, Clarke CL, Gibb CE. Dementia and relationships: experiences of partners in minority ethnic communities. J Adv Nurs. 2012 Oct;68(10):2207-17. doi: 10.1111/j.1365 2648.2011.05905.x. Epub 2011 Dec 11.
Bowes A, Wilkinson H. ‘We didn’t know it would get that bad': South Asian experiences of dementia and the service response. Health Soc Care Community. 2003 Sep;11(5):387-96.
Burns A, Mittelman M, Cole C, Morris J, Winter J, Page S, Brodaty H. Transcultural influences in dementia care: observations from a psychosocial intervention study. Dement Geriatr Cogn Disord. 2010;30(5):417-23. doi: 10.1159/000314860. Epub 2010 Nov 12.
Chan WC, Ng C, Mok CC, Wong FL, Pang SL, Chiu HF. Lived experience of caregivers of persons with dementia in Hong Kong: a qualitative study. East Asian Arch Psychiatry. 2010 Dec;20(4):163-8.
Connell CM, Gibson GD. Racial, ethnic, and cultural differences in dementia caregiving: review and analysis. Gerontologist. 1997 Jun;37(3):355-64.
Day A, Francisco A. Social and emotional wellbeing in Indigenous Australians: identifying promising interventions. Aust N Z J Public Health. 2013 Aug;37(4):350-5. doi: 10.1111/1753 6405.12083.
Friedman MR, Stall R, Silvestre AJ, Mustanski B, Shoptaw S, Surkan PJ, Rinaldo CR, Plankey MW. Stuck in the middle: longitudinal HIV-related health disparities among men who have sex with men and women. J Acquire Immune Defic Syndr. 2014 Jun 1;66(2):213-20. doi: 10.1097/QAI.0000000000000143.
Johl N, Patterson T, Pearson L. What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings. Dementia (London). 2014 May 22. pii: 1471301214534424. [Epub ahead of print]
Khan F, Tadros G. Complexity in cognitive assessment of elderly British minority ethnic groups: Cultural perspective. Dementia (London). 2013 Feb 21;13(4):467-482. [Epub ahead of print]
Kirk LJ Hick R, Laraway A. Assessing dementia in people with learning disabilities: the relationship between two screening measures. J Intellect Disabil. 2006 Dec;10(4):357-64.
La Fontaine J, Ahuja J, Bradbury NM, Phillips S, Oyebode JR. Understanding dementia amongst people in minority ethnic and cultural groups. J Adv Nurs. 2007 Dec;60(6):605-14.
Lim YY, Pietrzak RH, Snyder PJ, Darby D, Maruff P. Preliminary data on the effect of culture on the assessment of Alzheimer’s disease-related verbal memory impairment with the International Shopping List Test. Arch Clin Neuropsychol. 2012 Mar;27(2):136-47. doi: 10.1093/arclin/acr102. Epub 2011 Dec 23.
Llewellyn, P. The needs of people with learning disabilities who develop dementia: A literature review. Dementia 2011 10: 235-247.
Low LF, Anstey KJ, Lackersteen SM, Camit M, Harrison F, Draper B, Brodaty H. Recognition, attitudes and causal beliefs regarding dementia in Italian, Greek and Chinese Australians. Dement Geriatr Cogn Disord. 2010;30(6):499-508. doi: 10.1159/000321667. Epub 2011 Jan 20.
Manthorpe J, Moriarty J. Examining day centre provision for older people in the UK using the Equality Act 2010: findings of a scoping review. Health Soc Care Community. 2014 Jul;22(4):352-60. doi: 10.1111/hsc.12065. Epub 2013 Aug 17.
McCleary L, Persaud M, Hum S, Pimlott NJ, Cohen CA, Koehn S, Leung KK, Dalziel WB, Kozak J, Emerson VF, Silvius JL, Garcia L, Drummond N. Pathways to dementia diagnosis among South Asian Canadians. Dementia (London). 2013 Nov;12(6):769-89. doi: 10.1177/1471301212444806. Epub 2012 Apr 26.
Morhardt D, Pereyra M, Iris M. Seeking a diagnosis for memory problems: the experiences of caregivers and families in 5 limited English proficiency communities. Alzheimer Dis Assoc Disord. 2010 Jul-Sep;24 Suppl:S42-8. doi: 10.1097/WAD.0b013e3181f14ad5.
Nakanishi M, Nakashima T. Features of the Japanese national dementia strategy in comparison with international dementia policies: How should a national dementia policy interact with the public health- and social-care systems? Alzheimers Dement. 2014 Jul;10(4):468-76.e3. doi: 10.1016/j.jalz.2013.06.005. Epub 2013 Aug 15.
Price E. Coming out to care: gay and lesbian carers’ experiences of dementia services. Health Soc Care Community. 2010 Mar;18(2):160-8. doi: 10.1111/j.1365-2524.2009.00884.x. Epub 2009 Aug 25.
Prince M, Acosta D, Chiu H, Scazufca M, Varghese M; 10/66 Dementia Research Group. Dementia diagnosis in developing countries: a cross-cultural validation study. Lancet. 2003 Mar 15;361(9361):909-17.
Regan JL. Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services. Dementia (London). 2014 May 22. pii: 1471301214534423. [Epub ahead of print]
Rovner BW Casten RJ, Harris LF. Cultural diversity and views on Alzheimer disease in older African Americans. Alzheimer Dis Assoc Disord. 2013 Apr-Jun;27(2):133-7. doi: 10.1097/WAD.0b013e3182654794.
Stokes LA, Combes H, Stokes G. Understanding the dementia diagnosis: the impact on the caregiving experience. Dementia (London). 2014 Jan;13(1):59-78. doi: 10.1177/1471301212447157. Epub 2012 Aug 3.
Sun F, Ong R, Burnette D. The influence of ethnicity and culture on dementia caregiving: a review of empirical studies on Chinese Americans. Am J Alzheimers Dis Other Demen. 2012 Feb;27(1):13-22. doi: 10.1177/1533317512438224.
Werner P, Karnieli-Miller O, Eidelman S. Current knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century. Alzheimers Dement. 2013 Mar;9(2):e74-88. doi: 10.1016/j.jalz.2012.02.006. Epub 2012 Oct 24.
Wilkinson, H, Kerr, D, Cunningham, C. Equipping staff to support people with an intellectual disability and dementia in care home settings Dementia vol 4(3) 387–400
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.
If no two people are the same, how can we build ‘dementia friendly communities’?
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’.
How Can We Include People With Dementia in Our Community? from NEIL Programme on Vimeo.
It’s time we talked about ‘dementia friendly communities’
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:
@SDenegri “i’m not sure I know what dementia friendly communities are. I’m not sure I even like the term” #SDCRN
— 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.
@legalaware so many disability or dementia friendly ideas are also opportunities for inclusion. pic.twitter.com/72ugSoItGl
— 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.
LegalAware Review of the Year 2011 – Part 3 (Oct – Dec), disability and inclusivity
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.
October
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.
November
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:disabled@nus.org.uk.
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.
December
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.
BPP Legal Awareness Society – arrangements from January 2012
Our meetings will be held at the BPP Law School in Holborn from January 2012.
The purpose of this Society will continue to promote the importance of law and regulation in the function of all businesses including corporates.
I hope you may continue to support our Society. Details of forthcoming meetings will be posted soon both here on this blog and the official site for BPP students here. They will cover, as usual, the range of traditional practice areas in international corporate law. The Society, run by BPP students, will continue to emphasise the critical importance of diversity, equality and inclusivity for disabled law students. We are proud to do so.
"Have you been Aldridged?"
After I had posted an article on the use of Twitter by lawyers, things were said and noted, and I deleted the ‘unhelpful’ article on Friday evening. The intention of this article was to explain why legal tweeting might or might not confer a ‘competitive advantage’ using “Porter’s 5 forces” theory developed at Harvard University, and that was it. Meanwhile, @charonqc published his article yesterday evening, entitled “Postcard from The Staterooms: #Alridgegate edition …. Have you been “Aldridged” and some other b*ll*cks“. This was in response to an article which attracted much attention amongst legal tweeps entitled, “Lawyers enjoying tweet taste of success” which emerged on Friday afternoon. I certainly do not believe that the generic subject of how lawyers, in training or otherwise, engage with Twitter is a “sacred cow“.
Where we do all most definitely converge is our passion for education. In reply to @CharonQC’s question which is clearly not aimed at me, I can say that “I have been Alridged”, and in my case it was an entirely constructive experience. Last Friday, my first ever legal podcast came out, courtesy of @AlexAldridgeUK. I had a very rewarding and intelligent discussion of the many positives that law firms demonstrated in trying to embrace diversity in recruitment, and Kevin Poulter, a solicitor, social media enthusiast and columnist for ‘London Loves Business‘ (twitter account hereand website here), extended the scope of the discussion to include members of society, who are disabled, working in law firms.
I was invited along as the organiser of the BPP Legal Awareness Society (my twitter thread is here), which equally has a passion for enmeshing legal and business education. It just happens that I am disabled. The thread is continuously busy; we discussed the Final Independent Commission on Banking Report this morning which was published at 0615. My article, published at 0640, is here.
As others have given aspects concerning “the Aldridge article” considerable air time on Twitter already, I thought it only appropriate to give some airtime on my carefully arrived at thoughts about diversity, which I am happy to say have been recognised in a positive manner by @SundeepBhatia2. Sundeep is a Law Society Council member, and whom I respect enormously. His excellent podcast (no 193) with @charonqc can indeed be heard here. I would very much like to advance meaningful discussion about this, so a ‘realistic‘ picture emerges without any unhelpful intervention of recruitment consultants who are protecting their clients – their paying law firms.