Transparency across the divide

http://vaperforms.virginia.gov/

http://www.gov.scot/About/Performance/scotPerforms
Edit 18/05/2020: Now to be found at https://nationalperformance.gov.scot/

The above two links show the accountability and transparency initiatives of the Scottish and the Virginian State governments. I am heavily impressed by these initiatives. The idea is to choose a number of broad goals that everyone agrees on as target outcomes for the government, e.g. that people are more healthy; then to divide the broad target outcome into more specific aims - e.g. access to health services should be easy, people should smoke and drink less, there should be awareness of mental health issues - and then a number of specific, measurable indicators are chosen to show progress towards these aims - e.g. average waiting time in the A&E room or for a gyneacologist appointment; amount of cigarettes and alcohol sold on average per month per 1000 inhabitants; I am just coming up with random examples here when in fact you should look for yourself on the website. The point to take home is that it is a complete upheaval of the way that governing is thought about.

In Northern Ireland at the minute they are thinking about setting up something not dissimilar, called Outcomes Based Accountability. I think it's a very interesting initiative because it could be seen as an attempt to depoliticise politics. Instead of focusing on the heavy symbol politics regarding flags and language legislation that normally goes on, the focus is shifted to these goals that are so generally desirable that even Sinn Fein and the DUP do not disagree about them. A whole army of statisticians and social researchers finds employ in deciding on good indicators and diligently measuring their progress. Then the debate, in this fantasy future Northern Ireland, is about why the indicators did not go up, and what measures could be taken to make them go up in the future. No more symbol politics needed, unless it in some way is relevant to the indicators at hand.

N.B. I wrote the above a while ago. In fact then, as now, the Northern Irish government is non-existent, let alone actively setting up any new form of accountability. They've recently taken over the record for longest period without a sitting government from Belgium. This while Northern Ireland plays such a key role in the Brexit negotiations - of which all I can say is that based on the information available to me, my mind has decided it is a botched process. Alas, I have exiled myself from the Northwestern-European Archipelago, in search of better work opportunities there where the statisticians already have a firm grip on politics.

Edit January 2018: Here's a blog written on the topic by Aongus O'Keeffe of Inspiring Impact NI, about the factors that need to be in place to transfer to outcomes-based governance.

Television and the promotion of national identity: Our Friends in the North on RTÉ

Kevin McAleer, promotion picture for Our Friends in the North. Source

Last year I took a class "Broadcasting and the language of identity". It was a bit of a weird class, in which we talked about national identity, subcultures, music, TV and radio but without very much theory or feedback. However, I had fun writing the final essay for it. It is about the Ulster Scots Broadcasting Fund and specifically about one show funded through it, Our Friends in the North. This is a show presented by comedian Kevin McAleer, from Co. Tyrone, who visits and interviews people who see themselves as Ulster-Scots, to get to know and understand the language, culture and history. In the article I try to pick apart how the programme promotes national identity in a way that makes it palatable to the public.

Click here for the article

The Language Revival Efforts of the Department of Agriculture and Rural Development

 The Department's promotional image on their Rural Development page.

Now that we have a solid impression of Ulster-Scots poetry, it is time to move on to an analysis of a wholly different genre that has popped up in the last few decades: Civil Service Scots, or official translations from English-language government documents to Ulster-Scots.

1(a) Why was this text created?

The question of why official documents are translated into Ulster-Scots is an interesting one. Especially if the translations contain unprecendented spelling and neologisms that may make the text quite hard to understand to actual Ulster-Scots speakers, the translations appear as unnecessary money waste at best and actually harmful to the development of the language at worst. Gavin Falconer (2004: 68-70) argues that the "minor revolution in official translation" that is underway in Northern Ireland is a result of parity of esteem and human rights discourse gone wrong. He writes:

 "Some of the commissions received by us have been instigated by a single individual's decision to make an issue out of the fact that a document has been translated into one language without any equivalent translation into the other - a precarious basis both for a business and for language revival. Some of our lengthiest translations have been commissioned on the off-chance of such a complaint arising without any intention of publication."

It is not clear that this is the common treatment of translations of all government departments. The DARD states in their 2011 document Language Policy for Irish and Ulster Scots that translations will routinely and pro-actively be done of material if it is intended for wide usage; if it is of particular relevance to Irish and Ulster-Scots speakers, or if it will contribute to safeguarding and promoting the language. Information leaflets do not necessarily need to be printed in all languages, but should be made readily available digitally "when required". Furthermore "when requested", translations of other documents will be considered, "subject to cost and value for money considerations".

Rural cottage in Co. Tyrone, on filmlocations.co.uk

In a later article Falconer (2005: 57) suggests six criteria for what makes a good translation into Ulster Scots:

• Will readers be able to access the information in the text by drawing on a familiarity with traditional Ulster-Scots literature? 
• Since so many users, even of full Ulster Scots, are literate only in English, will readers be able to access the information in the text drawing on a familiarity with the ortographic practices of that language? 
• Is the spelling of the text logical and consistent?
• Is all the information in the English text given in the Scots translation?
• Are the translations used for individual terms consistent, including across different translations, or are they being coined on an ad hoc basis?
• Would a back translation into English produce something close to the original, in a comparable register and without excessive paraphrase?

Discourse dissemination across social boundaries

Picture by brooklynpix

Having embarked on the mission to find out how to do Critical Discourse Analysis, it was nice to find out that one of the staff of the School of English and a former teacher of mine, Dr Mayr, has recently brought out a book with exactly that as the title. I've borrowed it from the library (a hassly affair as it is only available as a short loan, which has me running to the library through the rain at 3:45pm to return it before I get fined at exactly 4pm) and eventually decided to purchase it as it's useful and because I feel a sense of pride at owning books from people who have taught me.

The book intends to show precisely how the "semiotic choices" authors make (authors here referring to journalists and writers as well as photographers, singers, visual editors and whoever engages in communication) are influenced by and feed into discourses, or frameworks of interpretation, which are in turn ways to obscure the ideology of the text. These ideologies form the hegemony of the higher classes, and eventually serve to convince the lower classes that the way the higher classes control and oppress them is in fact legitimate. 

Let me first say that the book does a really good job of showing how these semiotic choices work. I will be writing more on this later as I will most likely be basing a lot of the analysis I'm going to do on what's explained in the book. As of yet I am working my way through it to form a sort of plan for how to do the analysis. 

So although I really do admire the minute detail they go into when analyzing texts, some of the underlying ideology shall we call it irks me to the max. The idea that - even in a democracy - the higher/educated/managerial classes, the ABC, control the lower and working classes, the DE, through the media (such as the Daily Mail which a lot of the examples in the book are drawn from) is in fact almost belittling as it implies that the lower classes have very little agency of their own. 

This is a quote from the book:

Power comes from privileged access to social resources such as education, knowledge and wealth, which provides authority, status and influence to those who gain this access and enables them to dominate, coerce and control subordinate groups. (...)

Power can be more than simple domination from above; it can also be jointly produced when people are led to believe that dominance is legitimate in some way or other. (...)

Power, at least in democratic societies, needs to be seen as legitimate by people in order to be accepted, and this process of legitimation is generally expressed through language and other communicative systems. (Machin and Mayr, 2012: 25)

To do a little analysis here; in the second part of the quote "people" are an object of a passive verb: they are led to believe that the dominance is legitimate rather than that they just believe it, which would imply more agency on their part. Who is the implied actor here? Who leads them to believe it? With reference to the first part of the quotation, it is suggested that "those who gain this access" are the ones who lead the "people" on and who are apparently not "people" themselves. Also, "dominance" could have been phrased in a more neutral manner, as "reign", "regime" or "government". Dominance is a very charged word which implies that the one group is controlling the other. The rather explicit suggestion throughout is that those who have money and who are educated are controlling and coercing the poor and the uneducated.

However if we are talking about how the higher classes control the lower through ideology, then it makes no sense that most of the examples in the analysis are from a paper (the Daily Mail) that espouses views almost exclusively held by the lower classes, as opposed to the Guardian or the Times, which communicate ideas more popular with the higher and middle classes. Clearly there is a question here about who actually writes the articles; who communicates these ideologies and why is it in their interest to do so. Also, one needs to know what the actual readership of the articles is like.

I am under the impression that the Daily Mail is written for and by people from working class environments and communicates ideas held by some people in this group, though certainly not all. The ideology of the educated classes is more so represented by papers like the Guardian, which is also written by people who come from ABC environments. (I should warrant that I am working on impressions, but I would be surprised if I were proven wrong.A research project to back up this hypothesis could take the form of a survey for journalists of the various papers, to ask about their and their parents' education, type of work and income and their political leanings.)

Now, if both groups actually read papers written by their own group, then where does the transfer of ideology happen?

Another source of material analysed in the book is the Cosmopolitan. Machin and Mayr show how its imagery and articles paint a streamlined, idealised and kind of vapid picture of what women's lives are or should be like, and then promote the accesoires that belong with such a lifestyle. It is very entertaining to read their minute analysis of the high-pitched lighting and absolute absence of any clue as to what type of work the stylishly dressed women are doing.

A question that they leave open, which is fair enough to them I suppose, is "who actually buys this crap?" Who are these women spending actual money to read the magazine? Who takes the barely obscured sales pitches and laughable advice serious? Now beside all the people who read the magazine for a laugh, although that may very well be a majority of the readership, I believe that the intended audience of the newspaper is a group of girls and women who do in fact have an image of what their own lives are or should be like that matches the image sketched in the Cosmopolitan. They buy the magazine because they would actually like some advice on what make-up products are available and how they could go about wooing a man, in the same way that I bought the How To Do Critical Discourse Analysis book because I wanted to know precisely that.

If this is true it means that the group who reads the magazine does so because they already share its ideology. The same may be true for the newspaper choice; the Daily Mail readership shares its fairly explicit racism, its sense of humour and its obsession with "crazy murder beasts" who batter little children. The Guardian readership would indeed like to be informed about the latest developments in the NSA debacle or what's on show in the country's modern art museums. That's why they buy the paper.


In conclusion, ideological hegemony via newspapers may not work in the way the authors seem to suggest - ideas "produced" by a powerful group that serve to prolong their domination over the less powerful group. In a democracy, this theory belittles the wit and agency of those supposedly subordinate groups. Rather, each group communicates their ideology to other members of the same group, who are not "led to believe" new discourses but who in fact already agree, which is the premise that their voluntary consummation of the information is based on. Within the groups discourses develop organically, but they will be slower to filter down from the one group to the other.

Rather than media, education may be a key to how some discourses are communicated across social boundaries. Again it should be asked who decides on the content, who communicates it to the children, and how much of it the children actually believe and internalise.

Interview questions

I spent the morning writing my interview questions. John helped to type it up. Look at the nice format:

       

I chose to use a lot of questions from Brady, Verba and Schlozman's article (the one I discussed here). I want to ask the interviewees about their resources and civic skills in order to identify obstacles to participation, and since the questions by Brady et al. (Herafter BVS) were designed to do exactly that it makes sense to copy them; and this way the results can be cross-compared.

There are two major complications with importing BVS' questions. First of all, I am interviewing people in a mental health service, but a lot of the questions are not entirely relevant to their day-to-day life. For instance the question "Last week, were you working full time for pay, working part time for pay, keeping house, going to school, or something else?" can already be answered to some extent for probably all of the interviewees: they visited the service where I will be talking to them. In order to fix dis disparity I have added a couple more specific questions and slightly changed others - to the question in the example I added the option "visited the service".

The other complication is that this survey was designed for people in the United States, but this is Northern Ireland. The problem is not just that I have to edit the questions so that they apply to the local situation, so for instance "secondary school" instead of "high school". More importantly, because of the political situation in Northern Ireland people may feel scrupulous or hesitant to answer certain questions such as: what language do you speak at home? Are you a UK citizen? What is your religious denomination? I don't want to ask such questions unless strictly necessary. I added a disclaimer to let the interviewee know the research is not about the sectarian division and they do not have to tell me what side they are on.

BVS designed their questions for a large-scale quantitative interview. I am going to interview too few people to meaningfully compare my results, but still their results could serve as a way of placing mine in context. For instance, if a participant turns out to have very little time, we can refer to BVS who found that people with little time generally do not participate as much. The ease of integration of their questions in my interviews shows that a question is not inherently qualitative or quantitative; it depends on the number of research participants and on how the acquired information is processed.

P.S. I updated my consent form so that it is relevant to the actual questions. Here

Research (now with vulnerable adults)

My practical research (as opposed to the literature review) consists of two major parts, one of which I've already completed and the other I haven't made an appoitnment for yet. I'm going to have to hurry as I've a month left to get EVERYTHING done so interviewing, writing, editing, cleaning up the references, getting the whole thing printed and ring-bound somehow.


Research design

Part one is an experiment, to do with the All-Party Group I described in the previous section. For one of the meetings we invited a service user to come along to give a talk about her experiences with the particular piece of legislation that the meeting was about. After her talk I handed out surveys for present MLAs and MLA representatives to fill out, about what they thought of the talk and if they had had contact with service users before, that sort of thing. Beside the surveys the oral comments from those present, my own observation, and importantly the conversations I had with the person who gave the speech were very useful sources of information. Conclusions from the experiment relate to how a service user can be accommodated to give such a talk and how it can have the most impact on the decision-makers it is meant to influence. Here is the questionnaire I used.

Part two of the practical research, the part that I haven't done yet, would be interviews with service users, nurses and officials about their experiences with politics and the obstacles and barriers to their participation. The questions I had for this are actually, in hindsight, pretty bad; I'm basically just asking them what programme they think should be ran. That's alright as a side question but not as a main question I don't think. Having done the research that I've done now I think there should be:

1. Profiling questions about their type of illness and what class they would say they were in; middle, working, upper?
2. Identifying barriers or obstacles to participation
1. A considerable section on civic skills -- maybe I could ask some of Brady, Verba & Schlozman's original questions. This is to test my thesis that this is one of the main obstacles. Includes questions about education, work experience and confidence.
2. Questions about their opinions of MLAs and of Stormont to see if they think politics is really impenetrable, plus a couple of knowledge questions about Politics to see if they need informed about politics, as this is one of the Rethink Politics programme's main pivoting points (besides skill building.)
3. Searching solutions: would they participate in 
1. a programme to help them build civic skills 
2. a committee or board 
3. a user-run service... and which do they think would help (and why?) (and which programme do they think should be ran, if any)

Research ethics

As much as I like this whole blogging thing I won't be able to post any of the evidence or the results on here though. That's part university etiquette and part common decency, succinctly summarised as research ethics. When talking about research ethics, people suffering from mental illness are generally classed as vulnerable adults, along with people with Down's syndrome and learning disabilities. The main ethical priorities when doing research with this "group" are informed consent, privacy and confidentiality. I will now explain what these mean in general and for my research in particular, among other issues.

Informed consent means the participants in the research know what the research is about and what the risks and benefits for them could be. With people with learning disabilities the risk is that the researcher might make them sign a form to say they have read and understood the risks of the research, when in fact they have no idea what's going on. One time as a kid I was playing with marbles with a girl my age who had Down's syndrome. I asked did she want to play "keepsies", i.e. whoever won got to keep the marbles, and she said yes; but then when I won and wanted to keep her marbles, a classmate told me off. His argument was that whatever I'd ask her, she would probably say yes despite not understanding. Here we could say there was no informed consent despite her "signing my form". I don't think this scenario applies to mental health service users as much as it applies to people with Down's syndrome. In fact the whole point of my research is that mental health service users may have lost control over some parts of their lives, but this does not mean that they are unable to make sensible decisions about any part of their life. (What do the experts say?) My consent forms for the interviews: 1, 2

Another problem of informed consent is that in some researches it is crucial that the participant does not know exactly why they are being asked to do something, as it could influence the way that they do it. This is not a problem in my research; for the interviews I will tell the participants in advance what my research is about and why I'm asking certain questions, and for the experiment I went to great lengths to make sure that the speecher didn't mind me handing out questionnaires and I had her read the questionnaires and told her I could edit them if she wanted me to.

My main concern was that she'd feel like she was being judged for the speech - which would be understandable as the questionnaires are basically asking MLAs "what did you think of this speech". I think this demonstrates the tension between getting research results and taking care of your participants. If I'd made her feel too bad about herself to give the speech then I couldn't have gone on with the experiment despite how many positive implications it might have had for mental healthcare in general and for my own academic credentials. This is now drifiting away from informed consent in the direction of psychological harm, which is something that you want to avoid as a researcher. I think psychological harm is a bigger risk when doing research with mentally ill people than lack of informed consent is, as service users may already lack self-esteem. If they are portrayed negatively in the research report or if they get the idea they did something "wrong" e.g. they gave the wrong answer to a knowledge question, this might further undermine their self-esteem.

Mental health service users also have a lot to win or lose when it comes to forced treatment and imprisonment and rights to self-determination. This was also noted by Barnes et al. while they were trying to find user-run groups to participate in their research:

Users of services have objected to being subjected to the professional gaze of the researchers as they are also objecting to being constructed as passive recipients of welfare services. In some instances they have refused to participate in researach projects. ... Considerable discussion was required before one particular group finally agreed to be involved. ... Researchers working in this area have to develop new ways of working with users as participants rather than subjects of the research process. (p.10-13)

Privacy and confidentiality together consist of the considerations: what can I ask, what can I write about and what do I do with the data afterwards? It's a bit like with the NSA. People may not be comfortable with their data being published all over the world, especially if it could still be connected to them in specific, and especially if it concerns incriminating, embarassing or very personal information such as experiences with drug use, memories of having been bullied or how long a person has been out of work for. Data can be anonymised, but the more detailed and specific the research, the more risk there is that participants can be identified by their remarks anyway. If there is one case study or one small group of interviewees, like in my case study, the risk of identification is quite high. Likewise it is higher in a qualitative study where participants are quoted at length than in a quantitative study where they represent a dot in a scatter plot.

To an extent risk of identification via quotes is inevitable especially if the point of the research is to ask people for their specific experiences, but the researcher should use their own good judgment in what information to quote and what to leave out. Specific placenames shouldn't be mentioned and names can be changed or left out of the report. In my particular case, I will be asking people for their work experience, but I'll avoid talking about that in any recognisable way. Once again, Barnes et al. came across a similar problem in their research:

Interviewees in one group had found it uncomfortable to have their words reflected back to them in the case study report. They were concerned that other group members would be able to recognise who had said what, even though individuals had not been identified. (p.14)

After I finish the research I'm going to have to destroy the records and transcripts of the interviews. It's a form of good practice even if there is no realistic risk that someone would find them and hound the interviewee for its contents. Really there shouldn't be anything that I could possibly still need it for and if I would use it in another way than for the reports, that would be something that the interviewees did not give me explicit permission for.


In conclusion, the risk that mental health service users would not be able to actually consent to the research is not very big and there is no deception involved. Real risks to studies in this area are negative portrayal of participants, such as making them seem like passive recipients of mental healthcare; causing psychological damage with unwarranted remarks or interview questions, and putting identifiable details from the interviews in the final reports. For each of these risks there are few absolute solutions other than the researcher being aware of this, using their good judgment and taking advice from others, including the participants themselves.

Administrative Support for an All-Party Group

In order to introduce the section on charity responsibilities I will talk about the charity I did my internship for, and what the internship work consisted of. First I'll explain what an APG is and does, then what the benefits of running one are for MindWise and what my job there consisted of.

What are All-Party Groups?

An All-Party Group is an opportunity for parliamentarians to discuss issues outside of the common room. They can bridge party lines, make alliances, ensure they are better informed of issues for debate and make plans for what action needs to be taken on these issues and network with representatives of organisations working in the field. Topics range widely, from housing development to jazz appreciation. In Westminster there are country groups as well, to discuss international relations between the UK and for instance Brazil or Qatar.

The All-Party Group meets regularly; ambitious groups may decide to meet monthly but bi-monthly or quarterly meetings are also common, as parliamentarians don't have much time. Meetings are often themed to a particular aspect of the group's topic or to a piece of legislation that falls within their field, e.g. the disability rights group may have a meeting about stigma, or one specifically about a new measure against unemployment. During the meetings there will usually be a couple of speakers who are experts on the specific issue, and there will be opportunity for a (panel) discussion.

The All Party Groups are meant as groups for and by parliamentarians. In Northern Ireland, the group has to be chaired by an MLA and only MLAs can be members. However, MLAs hold the right to ask for external support and this is where charities come in. According to the rules for APGs in Stormont:

All-Party Groups can choose to be supported by outside individuals and organisations. At the discretion of each group, outside individuals and organisations may contribute to organising meetings. They may also attend and speak at meetings. They can advise and support All-Party Groups, including through the provision of permanent secretarial support. They can even provide financial support or other material benefits, provided this is properly registered.However, they cannot become members of an All-Party Group and therefore cannot vote at any meeting or on any issue. Nor can they offer any payment, reward or benefit of any kind in the expectation that the Group or any member of the group will advocate or initiate any cause or matter on their behalf. It is acceptable, however, to arrange and pay for visits for members of the group where the purpose of the visit is related to the subject matter of the group. In such circumstances, members would be required to register receipt of such a visit on the Register of Members’ Interests. (p.13)

Advantages of external secretarial support

If a charitable organisation gives administrative support this has benefits for the MLAs as well as for the organisation itself. As stated MLAs have little time and so it may be too much of a burden to run an APG on top of their other duties, but with external secretarial support this is possible. Organisations already have a professional knowledge of the topic and are therefore better able to choose themes and speakers; they have contacts with other organisations in the field and so the meetings will provide better networking opportunities than if they were organised by an MLA (who, after all, have to spread their attention.)

For the organisation in turn it provides a lot of advantages to be the one running the APGs (rather than another organisation in the field). It increases their visibility for decision-makers and other organisations alike, and they do get some influence on promoting their point of view by inviting speakers who agree. For instance, by running the APG on mental health, MindWise's social model of mental illness gets a good podium rather than the more medicalised view that the Royal College of Psychiatrists would have (N.B. there have been speakers from the RCPsych, but MindWise decides on the themes of the meetings and gets to see the outline of the talk before it is given.) That said, in order to maintain credibility as representatives of the whole mental health sector in Northern Ireland, MindWise does need to invite speakers from many different organisations - their allies as well as their competitors.

Running an APG is a considerable amount of work, though. The administrative tasks include:

• booking meeting spaces and catering
• inventorisation of relevant organisations and stakeholders, making address lists, sending invitations, making attendance lists
• coming up with good themes
• identifying and inviting potential speakers, meeting up with them to plan their talk
• gathering typed versions of all talks, presentation outlines and information leaflets, and sending them to all attendants well in advance along with the agenda
• writing minutes during the meeting and sending them to all attendants afterwards
• getting approval for any decisions made from the responsible MLA

Health-related all Party Groups

Interestingly, looking at the list of APGs in Stormont (which is available on the internet, here) 15 of the 35 total groups have something to do with healthcare (I'm including everything from congenital heart disease to learning disability and pro-lifers.) This shows that the groups are a popular method of lobbying in the health sector in Northern Ireland, for whatever reason. John says the biggest employment sector in Northern Ireland is healthcare as well and that might explain it. I tried to count the number of health-related APGs in Westminster but there are a bit too many to count quickly - of the first five letters (A-E) there are 154 groups of which 32 health-related. That is about one-fifth when in Stormont it was almost half of the groups.

Institutional arrangements: How?

In the previous post I found that the process of building participation has two sides: the service user side and the institution side. The user can build their skills and try to be active and involved. The institution or organisation that the users are to participate in needs to change its attitude to users, on the one hand, and take practical measures to allow participation to happen, on the other side. In the previous post I talked about the BMHRG report and their examples of practical measures; in this post I will continue on that lead and talk about two other sources and their examples of practical measures.


Source 1: Tait and Lester get into the theory of involvement

The article by Lynda Tait and Helen Lester (link, scroll on to p2 of the pdf)  is probably the most directly relevant I've found to date - it's called "Encouraging user involvement in mental health services". It gives policy context, a bit of theory, reasons why it's important, reasons why it's hard, good examples and finally recommendations for organisations.

In the theory section they cite a schema devised by Peck et al. in an interesting sounding article that is somehow not findable on the internet (if you look at the content list for that journal pages 440-452 are missing, the article is 441-451) so we'll just have to work with what they say about it. The schema was in turn put together from different models of involvement. One of these focuses on the different roles a service user might have with regard to involvement, ranging from least involved to most involved: they could be the recipient of communication (about decisions that have been made); they could be a subject of consultation e.g. via surveys and councils; and they could be the agent in control, like in a user-run group. Consultation is seen by the authors as better than nothing, but not yet good; it is not seen as meaningful participation as the user does not have decision making power. Interestingly a page later (171) they say the emphasis should be on "partnership, influence or control" for users. Partnership is not in the schema on p 170 and they do not define it clearly so I don't entirely understand what the difference between a place on a committee and "true" partnership is.


Source 2. Cole et al. and indicators of the right attitude

To go on about meaningful participation a bit more; from the sources I have read so far I have got a better understanding of when participation becomes meaningful. Just a place on a board or a committee won't cut it, there need to be extra measures in place to ensure that the service user is listened to, taken seriously, and given actual decision making power. A lot of this is about attitude and the way people treat each other, and as a result some of the recommendations I have found take the form of indicators of the right attitude, rather than of things that are good in and of themselves.

An example of such an indicator is the following recommendation given by Cole et al. that people at the top (managers, planners, policy makers, councillors) should have regular contact with service users. I don't directly see the practical benefits of this recommendation in and of itself - in practice it would take a lot of time to organise when the input of the users may not have direct relevance to what each of the staff persons is working on. However, if you see this as an indicator, it would show that service users have been effectively involved in all levels of decision making.

The book by Cole, McIntosh and Whittaker is called "We want our voices heard" and it reports the findings of a project in York to increase involvement of people with physical and learning disabilities. The findings are fairly transferable to mental health, which ties in to my theory that a big part of increasing involvement is about adhering to general standards of accountability and democracy, rather than trying to work around the mental illness of the service user (which is what stigma would have us believe this was about). It is for a large part due to the general hierarchical structure of healthcare and social organisations that even "normal" people would have difficulty trying to exert influence. Yet for mentally ill people and disabled people it is on the one hand more important to get involved, because the organisations tend to have a bigger impact on their lives (for mentally ill people, mental healthcare service runs their housing and their day activities and social trust decides whether they are still eligible for disability benefits and then gives or withholds those). On the other hand, it is harder to get involved, as because of stigma they tend to be taken less serious than people without a diagnosis, and because of the illness they may feel more inhibited and less confident.


All recommendations in a list

Below some of the recommendations given by Cole et al. taken from the list entitled "In a service with effective user involvement we would see at the strategic level:"

• Users should be in committees and sub-groups with appropriate support; 
• There should also be parallel user-only sub-groups with negotiating power and a clear process for joint working with staff/professional groups.
  (One of the benefits would be that service users may feel less inhibited when talking to other users; furthermore they can talk in more detail about what changes are desirable from the user point of view. It's a bit like a parliamentary special interest committee in that sense.)
• The budget for user involvement is seen as essential and non-negotiable; a part of mainstream funding and not just an 'add-on' offered when there is some spare money.
  (I think this one is more tied to physical/learning disability than to mental health, but it raises the question what the costs of involvement could be. I think for mental health the obvious costs are for advocacy services and support of an advisor or carer; also for covering travel expenses as suggested by the BMHRG. Tait & Lester say that a service should create paid posts for service users.)
• Users should be involved in monitoring and evaluation on an on-going basis
  (Perhaps this is the opportunity for the paid posts suggested above)
• User involvement should be written into contracts.

Tait and Lester write that meaningful user involvement is not a one-off project, but it should be deeply integrated in every level of planning in a service. That's all well and good, but where do you start? They give a couple of examples of positive practice:

•  User-led research projects. In the decision-making process, research projects are an important stage as they influence the agenda: what are priorities for changes and improvements? When given a chance to do their own research, users ask different questions and may get different answers from the other users when interviewing. In one of my next posts I will write about research ethics; increasingly, users are objecting to simply being the subject of the professional gaze.
• User involvement in staff selection and training. I came across this idea before in the research for the post on user groups. This idea works on multiple levels; it gives the person who is applying or training for a job a better idea of who they will be working with, and what the job will be like. For the user it is a chance to exert influence on an important aspect of their own life, certainly if the staff is someone they would be in contact with every day. That said, even for a higher managerial staff position, it would improve contact and communication between the top and bottom levels of the organisation if users were involved in the selection. 
• Inclusion in the workforce. Given that users are experts on their own illness (they have lived it so they know what it's like living with it) it is not too far of a stretch to say that they should get paid positions supporting other people who are going through the same. Furthermore they could get paid positions in education and training of staff (see point made above) and in planning and administration. (This short article is specifically about the success of peer support worker programmes)

Coming up next

The "two sides" idea that I propagated in the introduction to this post - participation can be worked on from the user's side and from the organisation's side - leaves out the role charities and services can have in encouraging and enabling increased participation. In the next post I'll talk about what position they could and should take. I also want to reflect on what is more conventionally seen as political participation, as I have been talking mostly about advocacy groups and healthcare organisations so far (though which good reason. Which one? Stay tuned.)

The BMHRG suggests some very practical measures

(Note: I added a new page to the blog to explain the project I am writing these posts for)

I read the May 2012 report by the Belfast Mental Health Rights Group (BMHRG). They consist of service users and their carers and of families who have been bereaved through suicide, and they have ran a campaign for the past few years to try and improve first line care for mentally ill people in the Accident and Emergency room (A&E), specifically by lowering the time that people have to wait (4 hours just isn't acceptable if you are in a crisis) and by ensuring that people get a written notice of a follow-up appointment. In the report they explain how they have tried to monitor the progress on this campaign and in why they found it hard to. I wonder if A&E is really the best place for first line help as they are kind of notorious for making people wait for ages but to be fair the alternatives aren't as known or as accessible.

First of all I was very excited to read the following in their report as it confirms that my work so far has been on the right track:

Dr Helen Potts is a renowned expert in this area and she has previously
assisted the Belfast Mental Health Rights Group’s campaign for meaningful
and effective participation, her work and ours shows that participation requires
two things:
1.      Arrangements put in place to ensure participation at different stages
2.      Capacity building to ensure people have the ability to meaningfully and
effectively participate

We have been talking, on here, about capacity building; that's civic skill right there. However the arrangements at different levels are something that I still need to understand better; I think what it comes down to is that both the service user and the institution that needs to be influenced need to change things in order for participation to happen. The service user, with support from services (user-run or not) builds his capacity and in turn the institutions need to change their attitude to see the value and importance of involving users and carers and they need to put certain measures and agreements in place to make sure participation is meaningful, i.e. it is not just tokenism but users and carers have feasible influence and decision making power.

BMHRG go on to explain which practical measures they asked the Health and Local Care Board to take in order to allow the group to monitor progress and to know what was going on in the meeting. It is surprising how common sense some of these measures are, it seems like they are just requesting that common meeting etiquette is actually lived up to. This is their checklist (p.23/24 of the report):

Before the meeting:

• We had the date, time, location and agenda two weeks in advance.
• We had the opportunity to place items on the agenda and have them considered in a timely manner.

During the meeting:

• The language used was jargon free.
• Any information which was presented was in writing so we can discuss it with the rest of the group.

In general:

• Any disagreements were resolved at the meeting effectively.
• Our expenses were covered.

The list shows the challenges for any group of volunteers to participate: people have jobs/activities of their own so they need to be able to plan the meetings in advance and agree who attends them; they need to be able to discuss the meeting outcomes together and so they need to have the agenda and all the information from the meeting. The covered expenses makes sense if you know that a lot of service users rely on disability/jobseeker's benefits, but it also highlights that their participation should be valued by the Board. The Baoards's goal, after all, is or should be to offer a good standard of care; a goal which they cannot reach without input from those on the receiving end of the care.

The group sent the Board evidence that in over a year, these standards had not at all been lived up to. The Board have since given a staff member the task to ensure that they will in the future be lived up to; they have further said that they will use the lessons learned here in their wider participation projects, and that they would like to set up meetings so that this can be done. (p. 26)


Conclusions:

• The responsibility for making participation happen is on the side of the institutions as much as it is on the side of the service users
• Some of the measures that the institutions can take to ease participation are very practical in nature 

As for the attitude change; Liz Sayce and Barnes et al. (see previous post) all hinted that a lot of attitude change can be achieved by "just doing"; if a person who is open about their diagnosis finds a job, eventually people will realise that they can function normally and that they are not a constant threat (Sayce). For user groups the same goes: if a group calmly asserts themself and shows that they are well-organised and reliable, institutions will eventually come to accept this. In the case of the group studied by Barnes et al., the attitude change had been so far-reaching that by now, officials in the field feel it would be unacceptable for them to make a decision about local mental health planning without consulting the group first.

User groups

Tuesday I ended my post with Mary Kirlin's suggestion that involvement and self-organising is the best way to build civic skills. Today I would like to continue on this lead by talking about self-organisation of mentally ill people, or user groups. The question that would be interesting for MindWise is how they can (and whether they should) encourage and support similar initiatives within their organisation.

During my research before December '12 I already came across a couple of sources on user groups and self-organisation. I will discuss the sources here one by one.


Social versus biological perspective 

The first source I will discuss here is a chapter written by Julie Chamberlin simply called "User-run Services". It is published in Models of Madness edited by Read, Bentall and Mosher, which is a book advocating a less medicalised way of "dealing" with mental illness. They promote the idea that  "people are driven crazy by bad things happening to them" rather than by "genetic predisposition or biological disturbance". Because of this change of perspective other solutions seem obvious. In the case of genetic/biological disturbances the problem seems less resolvable, and medication seems like the answer. In the case of someone just having had a really bad time and responding dramatically, the right reaction seems to lend the person a shoulder to lean on and have a good chat with them. Medication can still be used but only if the person wants it, and rather in a supportive role (e.g. flatten out extreme emotional lows and highs with medication but also take therapy) than as the main method of treatment.

As far as I understand MindWise takes a similar view of mental illness and they are big on the so-called Recovery programme. This entails that a person, supported by a therapist, sets their own goals and challenges which they need to face with the eventual goal of living as independently as possible, i.e. finding a job and living in private accommodation rather than mental health housing. That means that the service user defines their own needs and problems rather than having that done for them by professionals. This stance is elemental to make my research question viable in the first place, as the question of getting mentally ill people involved in politics is based on the assumption that they are citizens like all of us who can stand up for their own needs. As I'm not a psychiatrist, but a Politics student, it seems important to me to make it clear whose lead I am following and what I am basing my ideas about mental health on.


Chamberlin explains the ideas of user-run services

The debate about biological versus medical perspectives on mental distress is relevant here because Chamberlin notes that user-run services often start as a protest movement against the traditional mental health institutions. She says that they are not necessarily anti-psychiatry, but that even those users who support traditional psychiatry still think that service users are often treated with a lack of respect (p. 284). They criticise the strong division between professionals and users: the doctors and nurses decide what is good for the user and the user is simply on the receiving end of care: maintenance and medication. User-run services at the other hand emphasise on democracy and peer support.

She gives an example how one service started (in 1971): in a psychiatric hospital users were treated during the day and permitted to go home at night and in the weekends. Users were prohibited from contacting each other outside the hospital. However they found that "crises frequently arose precisely during the times when staff were unavailable (evenings and weekends). ... One Monday morning the patients arrived on ward and learned that over the weekend one of their number had committed suicide. Many strong emotions were expressed, and one immediate result was the clandestine circulation of a patients' phone list." People found the network more useful than the therapy and after they were discharged they tried to find more people who had similar feelings about psychiatric treatment and to discuss what they could do about it.


Sayce and activities of user groups

I also read a chapter from Liz Sayce's book From Psychiatric Patient to Citizen: Overcoming Discrimination and Social Exclusion. Chapter 12, "Making Inclusion Happen at the Grassroots", starts with a section about user-run services, which for her is a prime example of anti-discrimination work as the groups she has seen try to show the community that mental patients are also people, that they are able to organise themselves effectively and that they mean well. From the examples of the activities of such groups that Sayce and Chamberlin give it seems that groups like these are primarily for peer support and advocacy (an advocate is someone who can speak for the mentally ill person, accompany them to meetings to make sure their opinions and needs are voiced). The groups are in a good position for political participation as well as anti-discrimination work though, and indeed they are often active on these fronts.

This is the list I made of activities of groups mentioned by Chamberlin and Sayce:

• Phone network (C, see above)
• One on one support, talking and helping (C)
• Providing housing (C) (this is also a source of funding)
• Providing food for those who need it through contacts with shops (S)
• Providing a safe place from violence (S)
• Advocacy (C/S)
• Helping out in the community e.g. shoveling snow (S)
• Providing one another with information on their rights (C)
• Helping those who are looking for work, e.g. allowing them to use the office voicemail as a return telephone number. (S)
• Activism (S, C quoted by S, not expanded upon)

Power through soft persuasion: Barnes et al.

The third source I would like to discuss is Unequal Partners: User Groups and Community Care by Marian Barnes, Stephen Harrison, Maggie Mort and Polly Shardlow. They did a case study about user groups for mental health and for disabled people. The study is focused on how such groups try to influence care and policy and how they are perceived by political and management figures.

The mental health group they studied in detail was mainly an advocacy platform, but aside from advocating for individual users they also had contacts and joint partnerships with health and social services; they invite officials to attend their own meetings and vice versa they suggest that the health and social services make posts for service users on their boards. The group is not very radical in their approach - they value soft persuasion through communication, they do not "come in banging the drum". However, they have created a platform to ensure user's views are not ignored, and they are taken seriously in doing so.

Barnes et al. note how since the foundation of this group in the mid-1980s, the attitude to them has changed considerably. Involving the users in the group in the decision making process has become the norm. The officials interviewed for the study (psychiatrists; managers and directors in the field) confirmed that they saw an important role for the group in challenging mental health professionals, challenging mental health management, providing information and education about mental health, ensuring participation of service users in decision making processes, and advocating for service users, e.g. in patient case reviews.

Campaigning was "not seen as a deliberate strategy" by the group, but it had been done; in reaction to plans for service developments in their area one of the local sub-groups had started a campaign which had included writing letters to MPs. However the group members feared that if they adopted a "deliberate campaigning stance, this could be experienced as threatening by officials". This shows again that they have opted for persuasion through communication, as they found it worked better and they were taken more serious than if they would be more rebellious and activist.


In conclusion/summary

Although user groups are often set up by people who find that the traditional system has failed them or does not sufficiently meet their needs, this disappointment with the system does not mean that their main activity consists of rallying against it. Rather, groups often function as a network to supplement traditional mental healthcare with peer emotional support and advocacy.

However their being set up by users, for users (often with long histories of mental health care experience) lends them legitimacy and authority, meaning that they are in a good position for anti-discrimination work and participation in (political) decision making processes.

This political activity can take the form of campaigning and activism: organising protests, drawing banners and writing letters to MPs; but it can also mean that the group posits itself as a talking platform for users and encourages services to consult them before making decisions. The latter one may even be more effective as officials tend to cooperate more when they do not feel threatened; however it also means making more compromises.

To relate this back to civic skill - it is undoubtedly being built by individuals who decide to organise a user group, however the sources I've found so far mostly highlight the other, more obvious benefits of user-run groups, also with regard to political participation.

If you are interested in this topic, try this report about research across a large number of user groups.

Building civic skill

In Friday's post on political exclusion I finished with a note about civic skills, a concept developed by Sidney Verba, Henry E. Brady and Kay Lehman Schlozman. I would like to expand a bit more on that concept in this post as it seems to me like this concept could be very useful in designing recommendations for encouraging participation in certain groups; they could receive training which focuses on building civic skills. Moreover I think that besides civic skill, confidence is an important factor in encouraging someone to participate.


1. What is civic skill and how do VBS measure it?

Civic skill is introduced in the article Beyond SES: A Resource Model of Political Participation, as one of the resources that people need to have in order to participate in politics. It is defined as "the communications and organizational skills that facilitate effective participation"(p. 271). Civic skills are developed through work experience, but also through being part of organisations (e.g. through volunteering for Humanitas), in high school government, and in one's church.

In their research the authors have used multiple indicators for civic skill, and they argue that these are perhaps not perfect but nevertheless do the job of indicating. They ask questions about:

• Level of education
• Participation in high school government (this one surprised me a little)
• Language proficiency
• Self-described skills and confidence
• "Skill acts"; how often did a participant attend a meeting where decisions are made, plan such a meeting, write a letter, or make a speech or presentation in the past six months a) at work b) for an organisation c) for a religious organisation (e.g. church).

2. Predictions about civic skills of mentally ill people based on known statistics of their employment, education etc

My hypothesis is that for mentally ill people, level of education and language proficiency will be roughly the same as for the rest of the population or slightly lower, but the real problem will be with the skill acts and the confidence. Note that these are related to each other: if a person writes a lot of letters he is more likely to feel confident in doing so (and vice versa.)

In this book I have here The Fundamental Facts 2007 from the Mental Health Foundation, they simply say that "low levels of education... are associated with a greater risk of experiencing a mental health problem" (p37). However, looking at the source they quote, I do not think this conclusion is merited. This (it links straight to the pdf) is the source they quote, a 2002 report by Her Majesty's Stationery Office. Table 2.1 on page 10 is about education level v. type of disorder. Looking at the column with all disorders grouped together and the one with respondents with no disorders, the differences can hardly be called significant: 28% of the people with disorders have no qualifications  versus 27% of the people without. 10% of both groups left school at 17. 39% of people with a psychotic disorder left school at 15, but then, there were only 60 such respondents.

This article however, "Education, sense of mastery, and mental health" is based on the premise that low education and mental health problems are linked - so there must be some truth to the claim. They refer to this source. I am now suitably convinced as they're psychiatrists and I'm not. The former article mentions that poor mental health may be one of the reasons why people have trouble completing their education. They advocate increased support and guidance for those who have educational problems.

It is a known fact that mentally ill people have more difficulty than average in getting and keeping a job. Sources: National Health Development Unit report, British Psychological Society (I am laughing at the line that they found "being a woman is the other strongest trigger influence on subjects with a genetic predisposition to mental disorder."). Also, an article from the American Psychological Association to say that unemployment also causes mental health problems. Relevant for our current topic is that if people are unemployed, they will have fewer opportunities for those skill acts that Brady, Verba and Schlozman talk about.

I do not have any statistics on organisation/church activity of mentally ill people, nor on their self-described skills (although I think that mental health problems often go hand in hand with low confidence and self-esteem, maybe because of the unemployment, the stigma attached to mental illness and the feeling of lack of control over one's own life.) I think it would be worth asking these sorts of questions if I get a chance to interview more people though; that said, anyone I'm going to be able to reach will already be a fairly active member of MindWise or NIAMH.


3. What would civic skills training look like? With help from M. Kirlin

For now I am interested in the question what sort of training could be offered to mentally ill people in order to help them improve their civic skill.  Let me advocate this a bit more: that civic skill is picked up largely on the work floor means it is also a job skill. Phoning people, writing letters, organising and participating in meanings; not far from the typical office job. Such training would need to be set up in such a way that it helps to build the self-confidence of the participants rather than patronise them (for instance with overly easy exercises). All in all it would work on several fronts at once; encouraging people to participate in politics and make their voice heard, preparing them for a job and helping to build their confidence at the same time.

For ideas on how to build civic skill I will borrow some ideas from Mary Kirlin, who in turn also got the idea from Schlozman, Verba and Brady's research. Her research focuses on adolescent "civic socialization" which I will remember as a key term that may become important later. By trying to apply her research to mentally ill people I am not trying to suggest that they are like adolescents, but rather that there is reason to expect that skill training that works in one place may also have positive effects for another group.

In this article she writes about community service programs and their influence on development of civic skills. She says she focuses on "how adolescents learn the doing of democracy, that is, active participation, not simply cognitive knowledge of political systems" (p.571). (Although seemingly straightforward, the distinction is a good warning for someone setting up a training programme). 


I think the most important conclusion in the article is that civic skill development happens when students are encouraged to organise themselves, to find out how to influence people and how to make collective decisions. This is why participation in high school government is almost unanimously found to be a good predictor of later political participation (she even claims with some conviction that this is not just due to self-selection of students who were already interested in politics), while sport clubs are negatively associated with later participation. Kirlin explains the latter:

While providing other benefits, organized sports provide little opportunity for civic skill development: the goal (winning) is predetermined, and adults undertake the planning for the season, organize the matches, and do most of the coaching. Opportunities for students to organise themselves, decide on objectives, and collectively make decisions are limited. The same may be increasingly true for service learning and community service: adults may have organized students too well, taking all the fun (and civic skill learning) out of the effort.  (p.573)

The point she makes here reminds me of something I read last November or so about mental health service users who organised themselves; initially they set up an emergency phone network for when staff wouldn't be available to call, so they could support one another; then that led to more and by now they have a walk-in service. I will try to find the source again tomorrow.

For now I would like to end today's post with a really cool thing from Kirlins's article - wish my university would offer this. In true Kirlin spirit I may go and suggest it to them.

I have begun testing this approach in an introductory undergraduate public affairs course. At the beginning of the term, students identify a public issue they would like to influence (by reading the local newspaper) and work in small (self-selected) groups to identify background, stakeholders, decision makers, and important timelines for the issues they have chosen. They then actively work to influence the outcome by writing letters, meeting with officials, attending and speaking at public meetings, and generating interest from others through media and other means. (...) Students have anecdotally reported increased understanding of the newspaper and local events, a much clearer understanding of who makes decisions and how to access them, and most importantly, confidence that they could get involved in an issue that interests them. (p. 574, my emphasis)

The importance of including everyone

It seems blindingly obvious to me that mentally ill people should be allowed to vote and participate in politics, which makes it quite hard to write about as the risk of stating the obvious is quite big. To keep it simple, let's first look at what international law and recommendations say. The FRA report on voting rights for people with disabilities or mental illness tries to answer that same question. They find that although international law legally protects the right to vote, they make an exception for mental incapacity which is seen as a reasonable ground to deny people the right to vote. However, between 2004 and 2006 a bit of a turnaround has happened in the attitude to mentally ill people's rights. I found some statistics here that show that Scottish awareness and stigma tackling campaigns helped to improve people's attitude to people with mental health problems. 2006 is also when the UN Convention on the Rights of Persons with Disabilities (CRPD) took place, and FRA quotes a number of Recommendations of the Committee of Ministers to Member States concerning this topic. One of the recommendations, Rec(2006)5 of 5 April 2006 I like especially because it's straightforward in stating the democratic principle this is about (even if it talks about people with disabilities rather than specifically with mental health problems):

"The participation of all citizens in political and public life and the democratic process is essential for the development of democratic societies. Society needs to reflect the diversity of its citizens and benefit from their varied experience and knowledge. It is therefore important that people with disabilities can exercise their rights to vote and to participate in such activities."

In one of the next posts I will try to explain the concepts of legal and mental capacity, which are important to understanding how rights, control over one's life, and making decisions work legally for mentally ill or mentally handicapped people. Based on a judging that a person is legally incapable people could automatically lose the right to vote. Although in some cases a person may genuinely be unable to vote - a person who is severely mentally handicapped, for instance - to have the right to vote taken away automatically for all people who are considered unable to make wise decisions about their own life, even if only in some areas, is a dramatic measure. This is demonstrated by a case that came before the European Court of Human Rights, Alajos Kiss v. Hungary, also mentioned in the FRA report. He was placed under partial guardianship because of his manic depression and subsequently lost his right to vote, as stipulated in article 70(5) of the Hungarian constitution. The European Court found this to be improportional and argued that such restrictions should be applied very carefully, especially if applied to a "particularly vulnerable group in society, who have suffered considerable discrimination in the past".

The story of the "considerable discrimination" that the Court refers to is a sad and frustrating one of involuntary electroshocks, bullying, and locking people into institutions which only serve to worsen their conditions. You may well have seen One Flew over the Cuckoo's Nest - here's a review about whether that film is realistic in its depiction of mental hospitals. The film depicts some rather extreme examples of patient abuse, as may be expected from a film - how else are they going to get viewers? Nevertheless, as the author of the review notes, the film was helpful in bringing attention to unethical patient treatment.

The previous maltreatment of mentally ill people is a testament to what can happen if people are excluded from decisions that concern themselves. A more modern example is the Work Capability Assessment, which I helped to organise a debate about during my internship for MindWise. See report; the authors explain that the decisions made regarding the WCA are intransparent and not evidence-based. Luckily in this case people are clearly voicing their opinions; whether they are listened to is a next question.


Besides these political and moral arguments for why mentally ill people's rights to vote and participate should be honoured, participation also has psychological benefits. It makes sense; having control over your own life and noticing that other people take you serious is crucial to building self-confidence which in turn makes you feel happier. This is discussed in detail in an article by Lynn M. Sanders, "The Psychological Benefits of Political Participation."


It is not just for the benefit of mentally ill people, but also for democracy itself that inclusion is crucial. If mentally ill people are automatically excluded from politics, a corrupt politician could simply get their political opponents sectioned (he doesn't agree with me so he must be crazy!!) For an amusing, not entirely fictional example read The Unlikely Genius of Dr Cuthbert Kambazuma (Set in Zimbabwe). The same goes with not allowing prisoners the right to vote (Northern Irish political terrorist prisoners being a controversial example).

From social to political exclusion

This is the second post in a series about political involvement for mentally ill people. In the previous post I wrote about social exclusion and mental health, this time I want to explain what political exclusion is and what forms it takes.


Political exclusion is an aspect of social exclusion. In the previous post I quoted the wikipedia definition that social exclusion refers to "processes in which individuals or entire communities of people are systematically blocked from rights, opportunities and resources that are normally available to members of society and which are key to social integration." Political exclusion then consists of processes which have the effect that specific groups or people are not or not fully involved in the democratic decision making process; they can or do not make their voice heard or are not listened to. (Note the difference between they can not and they do not make their voice heard, which ties into different ideas about the role of the government: should they involve people just passively or also actively? Is it enough to just give people the right to vote or does the government also have a duty to reach out to those who are not inclined to vote despite having the right to?)

First we should ask what rights, opportunities and resources are normally available to members of society. Political inclusion, involvement, engagement, happens through a number of channels, importantly voting and joining political parties but also charity work, lobbying, and participating in protest marches. Forms of behaviour that have a political effect but that I do not include are buying and selling, which has an influence on the market and which does suggest certain morals and ideas, and talking to friends about politics, thus influencing their ideas. Both of these activities have an effect on politics but very indirectly so; it would be hard to measure. At least for now I am looking only at activities in which people explicitly express their ideas and try to influence governmental politics directly. 


The resource model of political participation
Before I look at political exclusion further, it is important to first understand what normal participatory behaviour is like. I want to know a bit more, then, about how political participation is generally categorised and understood, so I found this article by Henry E. Brady, Sidney Verba and Kay Lehman Schlozman. It details the "resource model" of political participation that they developed to explain why socioeconomic status can predict the amount of participation of an individual quite well. In short, if you have more time, money and organizational skill you can give more of it. This is a reaction to what they call the SES model, which focuses on "components of socioeconomic status: education, income and occupation".

The main reason why their model is very relevant to our current pursuit is that it offers quite precise and well-defined measuring tools; how much income does a person get, how many hours are they in work or day activities (e.g. sport club). The question of whether mental health service users have the right resources available can then be answered, making it easier to distinguish between whether they can not or do not make their voices heard. It would point in the direction of the causes of political exclusion and in doing so the solutions will also become clearer.

Another important thing they note is that different resources can be handy for different types of political activity. This might be useful later on in the research when looking at the question of whether some types of political participation might be especially accessible for mentally ill people.

I have another report here by the Electoral Commission, called "Social exclusion and political engagement", which takes the same stance that "inadequate 'resources' (material wealth, education, and skills and membership of organised groups) constrain or promote [?] participation" (p.7). This shows that Brady, Venda and Schlozman's idea is not unique - maybe for the better, more support is probably not a bad thing. I'm still happy to have found the article as they explain it all very well and try to keep things measurable.


Election exclusion
Knowing a bit more about political participation, we can now look at practical forms of political exclusion. I'll talk about voting first. I don't think I have enough time/resources yet to discuss other types of involvement today in any way beyond pure guesswork (OK I'll posit one hypothesis, see below), but I'll come back to it later.

Voting is the most clear-cut and measurable example of political participation, and therefore also one of the most studied ones. First of all, looking at the law, we find that mental health service users are excluded from the right to vote in many European countries. We can also look at voting statistics to see whether those who have the right to vote, actually do (although this is a bit harder to find out.)

The European Union Agency for Fundamental Rights (FRA) has written a report entitled "The right to political participation of persons with mental health problems and persons with intellectual disabilities". They look mainly at the right to vote and to be voted for. The report was written "in the spirit" of the UN Convention on the Rights of Persons with Disabilities (CRPD) and notes that political participation "exemplifies the three key principles of the disability strategy grounded in the CRPD, namely: non-discrimination, equality and active inclusion." (p.7) (I'm making a note of this because I was happy to find it refers to what I said above about passive vs active inclusion.)

The report shows that the international community is quite divided on whether people who cannot take care of or responsibility for themselves should have the right to vote (also, whether prisoners or convicts should have that right.) In tomorrow's blog post I will discuss arguments for why people with mental illness should be included; for now it is enough to show that they are not. In 16 of the 27 EU countries considered in this report (written in 2010, so Croatia is not yet included) people are denied the right to vote or be voted for if they are under protective measures i.e. guardianship, regardless of their individual level of functional ability. Five countries (including NL!!! go us) have the right to full participation entrenched in their constitution and there are others that make specific provisions. On the UK (not-havers of a constitution) the report notes the following: "The Electoral Administration Act 2006 abolished the common law rule that a person lacks legal capacity to vote by reason of mental health problems." That said, it is slightly shocking how recently that ruling was still current.

On actual voting I have some sources that show that turnout is worse in socially deprived groups and communities. The Electoral Commission report I mentioned above notes that turnout among unemployed people is only 48%, but doesn't compare it to other groups, which is pretty terrible; luckily this website has the stats on the general turnout in 2001, namely 59.1%. It mentions research by Ipsos MORI which "estimates that 68% of social AB groups voted compared with 53% of DEs" (what are AB and DE groups, click here). These are both related to employment status, they also say the proportion of lone parents in a constituency was proportionally related to the turnout there. Although I haven't found any statistics on actual turnout among mental health service users yet, as I tried to explain in my previous post mental illness and social deprivation are very much related to each other, so based on the Electoral Commission data we can at least predict that turnout will be substantially lower.


Hypothesis to end the day's post
Following the line from the Brady, Venda and Lehman-Schlozman article, civic skill is crucial in organizing non-electoral forms of participation. That may contain the key to why it is harder for mentally ill people to get involved, as mental illness can inhibit civic skill; not to say that people haven't been properly educated or involved in their youth because often they have. The observable and obvious though is that mentally ill people have trouble taking responsibility and getting/keeping their life on track. Organisational and communication skills are exactly what one loses when mental illness hits and this is why such activities as charity work and organising protests are harder to get into.

Another post tomorrow, see you all then and thanks for listening.

Click here to see the sources found and used in making this post.

Churchills inzicht

Er is best veel onderzoek waaruit blijkt dat een of andere oplossing voor een bepaald maatschappelijk probleem de beste zou zijn. Veel van die oplossingen zouden echter moeilijk in te voeren zijn vanwege onbegrip en opstand van het volk

• De EU-grondwet
• D'66 huizenmarktoplossing
• moedertaalonderwijs voor afrikaanse stammen (onder voorbehoud)
• natuurbehoudmaatregelen

Echter om het dan aan het volk op te leggen ondanks de opstand kan per definitie niet in een democratische rechtsstaat. Betekent dat dat democratie een suboptimaal systeem is?

Winston Churchill quote:

Democracy is the worst form of government except all those other forms that have been tried.

Nog een (zonder bron):

The greatest argument against democracy is a five minute conversation with the average voter. 

Explaining what social inclusion has to do with mental health

Social exclusion is seen as both one of the drivers and one as the consequences of mental health problems, logically leading to vicious spirals. As a crude example, say someone has a relationship breakdown. They could be depressed and anxious as a result and lose their job, leading to debt, leading to housing problems, leading to low self-esteem and anxiety as well as the obvious perks of being homeless.

I have to catch up on a report for the internship I did between August and December last year for MindWise Mental Health. The main question of the report is what could be done to involve mentally ill people, or "service users" in MindWise terminology, in political decision-making. I'll keep track of my progress here as it's an opportunity to start writing and to break the question down in small pieces - I'm already really noticing the difference to my writing habits. In this post then I will further elaborate on social exclusion, in a/the next one perhaps on political in- and exclusion which is related but more narrowed down.

What makes the link between social inclusion and mental health problems really interesting is that it may be the key to understanding how come mental illness occurs much more in more deprived parts of society. (I think John Read makes the case for this really well in the book he wrote with Loren Mosher and Richard Bentall but I can't find it online to link it here. Here's a review though)

The definition of social exclusion seems pretty clear-cut to me but as with all things in Politics, really, it is an essentially contested concept (because politicians tend to bend and stretch language so it justifies their political decisions. Often intentionally. In this case, some argue talking about social exclusion became popular in politics because it was more acceptable, less inciting than talking about poverty.)

The definition in this report seems to take the contestedness of the concept into account:

The Social Exclusion Unit has always adopted a flexible and pragmatic definition of social exclusion as "what can happen when people or areas suffer from a combination of linked and mutually reinforcing problems".

The definition in the Wikipedia summary for Social Exclusion is perhaps less flexible but easier to understand:

Social exclusion refers to processes in which individuals or entire communities of people are systematically blocked from rights, opportunities and resources (e.g. housing, employment, healthcare, civic engagement, democratic participation and due process) that are normally available to members of society and which are key to social integration.

 I wanted to explain why mentally ill people especially have problems with social exclusion and what further consequences it can have for the people themselves and I have a number of tabs open with reports to read that will help me say it, but I think I explained at least part of that pretty well in the first paragraph; there is a cycle of opportunities that you can only grasp if you have certain other things sorted in your life, for which yet other things need to be in place.

Another big part of it is the stigma associated with mental health. At one hand actual discrimination from potential employers and from the community altogether will stop a person with mental health problems from reintegrating, at the other hand the fear of these things happening will make a service user want to stay in the relative comfort of the service. It will also serve as an obstacle to building up trust and self-esteem. Media contribute to the stigma as mental illness is often only mentioned in relation to crime, e.g. after a murder people will try to prove that the suspect was delusional.

This report further says that lack of clear responsibility and bad cooperation between different mental health organisations also don't help to prevent social exclusion.

Meat cleaver media

Remarkable: I read a Dutch newspaper article from 23 May and it explains how the woolwich meat cleaver murder suspects stuck around for 20 minutes after it happened, waiting for the police, asking bystanders to take pictures, and explaining their motives (they did it to ask attention for the muslims killed by British soldiers in Afghanistan). I heard nothing about their motives on the UTV news except that they were crazy radicals, possibly influenced by a controversial imam. News focused on the personal story of the soldier and his family.

What I'm surprised about is the huge difference between reporting style in the Netherlands and the UK. I'm guessing the UK media did not want to give the killers what they wanted i.e. attention. It would be in line with Thatcher's line on terrorism during the Troubles: do not give the terrorists an inch, as it will encourage other people to consider violence a valid/succesful way of asking attention for a case.

I'm wondering about the cultural differences this indicates though - how come it is normal openly to discuss suspect motives in the Netherlands? They did so when Mohamed B. killed Theo van Gogh (A lot of people said that "to be fair, van Gogh did make a habit of calling muslims goat fuckers".) Maybe it is because people haven't experienced sustained campaigns of terrorism here yet. Then again, that could be correlated: maybe there is more space for alternative opinions, meaning less people resort to terrorism.

Edit: the Daily Telegraph article actually does transscribe what the suspect says in the video.

Liberalisme en individualisme

Bijna uit: De utopie van de vrije markt van Hans Achterhuis, over de ideologie van het neoliberalisme. Het leest makkelijk weg en ik leer een hoop, wat natuurlijk grappig is omdat ik net mijn derde jaar van de studie politiek heb afgesloten en je zou verwachten dat bepaalde dingen al de revue hadden gepasseerd. Met name over de ideeën van Smith, Keynes, Friedman en Hayek wist ik nog weinig. Het is leuk om te merken hoe bij het lezen van zo'n boek een heel stel begrippen een plek vindt in mijn referentiekader - zoals wanneer je een nieuw woord leert en het ineens overal tegenkomt.

Martijntje linkte me een artikel: Nog steeds aan de papfles: Twintigers vinden het goede leven moeilijk, door Marijke de Vries en Birte Schohaus. Het claimt dat twintigers van nu van huis uit hoge verwachtingen van zichzelf hebben meegekregen en moeite hebben die waar te maken in een competitieve maatschappij met bovendien een economische crisis. (Ik vertelde hierover aan Annabel en Ryan en hij dacht meteen aan de Quarter-Life Crisis, maar als je het artikel mag geloven is dat een wellicht gerelateerd, doch ander probleem. Dat gaat over twintigers in het algemeen en dit specifiek over twintigers van nu.) Het interessantste stukje uit het artikel vond ik dit:

Het probleem ligt geworteld in onze neoliberale maatschappij: 'Opvoedingsidealen komen niet uit de lucht vallen. De verwachtingen en angsten van ouders zijn afkomstig uit de cultuur waarin ze leven.'
Tegenwoordig is dat het neoliberale model, waarin de moderne illusie heerst dat de mens maakbaar is. 'Daardoor wordt elk kind een project op zich, dat tot een topniveau ontwikkeld moet worden. Eerst door zijn ouders, daarna door zichzelf.' Het 'neoliberale narratief' impliceert een 'universeel egoïsme', zegt hij. Je moet er komen en de ander is sowieso een concurrent. Dat betekent ook dat je het aan jezelf te wijten hebt als je het niet haalt. 'De onvermijdelijke keerzijde hiervan is een groeiende groep mensen die zich mislukt voelt.'

Er worden hier een paar links gelegd tussen enerzijds neoliberalisme en anderzijds maakbaarheid, competitiviteit en individualisme. Die laatste vond ik met name interessant. Het klinkt nogal logisch dat er een link tussen kapitalisme en individualisme zou zijn - er is meer keuzevrijheid en daarmee meer druk om je eigen persoonlijkheid te benadrukken. Het idee dat je voor je naasten moet zorgen is door het neoliberalisme overboord gedaan en ingeruild voor het idee dat iedereen gelijke kansen heeft om voor zijn eigen geld te werken en dat het beter is om mensen aan te moedigen zichzelf te ontwikkelen, dan ze (overheids)steun te geven. Onafhankelijkheid en persoonlijke creativiteit staan hoog in het vaandel.

Wikipedia definieert individualisme als een ideologie die de nadruk legt op onafhankelijkheid, individueel belang boven groeps- of staatsverband, en verwerkelijking van je eigen doelen. Het wordt expliciet in verband gebracht met liberalisme, gedefinieerd als "persoonlijke vrijheid". Dat neigt naar een tautologie. De betekenis van liberalisme die hier wordt gegeven wijkt nogal af van die gehanteerd door Achterhuis, die het behandelt als het idee dat de markt vrij moet zijn. Neoliberalisme gaat nog verder dan "klassiek" liberalisme, door te stipuleren dat naast traditionele handel ook het lot van zorg, onderwijs, het bankwezen en bijvoorbeeld watervoorzieningen door marktprocessen moet worden bepaald.

Voorheen heb ik individualisme voornamelijk als een soort maatschappelijke variabele begrepen; als maatschappij kan je meer of minder individualistisch of gemeenschappelijk zijn. Als indicator daarvan moeten we kijken naar de eenheid op basis waarvan rechten worden toegekend - bijv. mensenrechten zijn voor individuele personen, minderheden in Oost-Europa vragen om groepsrechten. Verder kunnen we wellicht kijken naar afhankelijkheidsstructuren; hoeveel man telt een gemeenschap die voor zijn eigen behoeften kan zorgen, hoe ingewikkeld is de onderlinge arbeidsverdeling? Waar een dorp geheel in zijn eigen behoeften kan voorzien zou je van gemeenschappelijkheid kunnen spreken, op nationale schaal echter is het onmogelijk alle andere leden van de gemeenschap te kennen en wordt het dus individualisme. Als grens is misschien Dunbars getal handig? Ik weet echter niet zeker waar deze definitie handig voor zou zijn, of hij wat toevoegt.

Deze blogpost gaf me het idee om zelf een weblog te beginnen omdat ik het goed vond dat hij niet al te moeilijk deed met het onderbouwen van zijn theorie maar gewoon wat theorieën opdiste die retorisch wel goed klinken (al hebben ze analytisch bar weinig om het lijf). Hij claimt dat leden van de bovenklasse meer gemeenschap hebben dan de onder- en lagere middenklasse, die door de ideologie van het individualisme verdeeld raken waardoor ze makkelijker onder de duim te houden zijn. De gemeenschap van de hogere klassen bestaat volgens de schrijver uit "de juiste mensen kennen":

Knowing the right people, joining the right clubs, living in the right (gated) communities, gets you into the right schools, which gets you into the right jobs and the right marriages, and so on. 

 Het wordt dus gesuggereerd dat je geen gemeenschap hebt als je niet de beste baantjes en de beste huizen kan krijgen. Het ontgaat de schrijver blijkbaar dat hetzelfde mechanisme in de lagere klassen plaatsvindt; in de kerk, op school, in je familie en op je werk kom je mensen en kansen tegen die tot volgende mogelijkheden leiden, al zijn dat dan niet altijd topbanen of huwelijken met sterren. Hij ageert dus eigenlijk tegen ongelijke kansen en ongelijke verdeling van kapitaal, maar ik denk dat hij de uitleg daarvan in de verkeerde hoek zoekt.

Dit artikel vond ik ook goed. Het is geschreven voor Occupy Sydney en er wordt uitgelegd waarom individualisme geen bruikbare ideologie is voor de Occupybeweging, namelijk omdat het deel uitmaakt van de visie van "de 1%". De ideologie begon volgens het artikel tegelijkertijd met kapitalisme, en ging inderdaad om vrijheid: "In the market, everyone is free to make their own decision about what to buy and sell, without any outside input". Deze vrijheid blijkt echter een illusie, omdat het startpunt niet voor iedereen gelijk is en dus kunnen de haves de have-nots uitbuiten. Wat me stoort aan deze uitleg echter, en ook aan het hiervoor genoemde artikel, is hoezeer er een bewuste intentie om uit te buiten en te onderdrukken aan de hogere klassen wordt toegeschreven. Dat is een grote groep die ten eerste niet duidelijk politiek georganiseerd is (wellicht in politieke partijen die overwegend het belang van rijke mensen steunen, maar die sluiten mensen uit lagere klassen niet of niet expliciet buiten) en die ten tweede niet uitsluitend uit slechteriken bestaat. Ik volg met veel plezier Joris Luyendijks columns over de City, en wat eruit naar voren schijnt te komen is dat maar weinig bankiers expres geld zwartmaken of expres onverantwoordelijke risico's nemen. Veel van de mensen die hij interviewt zien zichzelf vooral als radertjes in een groot, ondoorzichtig systeem, en ze leggen uit hoe dat systeem verleidt tot zelfverrijking en het nemen van risico's.

Tot zover de beschouwing. Conclusies: liberalisme breder is dan ik had gedacht, en individualisme heeft zich nog niet als bruikbaar idee bewezen.