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.
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