Independent Living, Psychiatric System Survivors and ‘Mad Matters’

By Peter Beresford

As a mental health service user/survivor, I have always valued the idea and philosophy of independent living developed by the disabled people’s movement. But I have also regretted that it has largely passed the survivor movement by because this has left us vulnerable and exposed. Let me explain.

The philosophy of independent living has gained international significance and had international impact. Building on the social model of disability it has challenged traditional free market views that all of us should ‘stand on our own two feet’ as isolated individuals.  Instead it has highlighted that we are all interdependent and for anyone to be independent, particularly as a disabled person, then they need the support that makes it possible for them to live on as equal terms as possible as non-disabled people. They also need equal access to the mainstream world through the removal of disabling barriers.

Survivors historically haven’t developed either an equivalent of the social model of disability or the philosophy of independent living. I believe we are now paying a price for this. Instead, the professional-led idea of ‘recovery’ has become central in government mental health policy and practice and while it seems to offer mental health service users some positives, I believe ultimately it is taking us down a damaging and wrong road. Of course it’s great that recovery suggests that mental health service users/survivors shouldn’t be written off and can contribute and be active citizens. But it is based on an inherently medicalised model of ‘getting better’. This has two worrying implications. First, governments like the current Coalition, measure getting better in terms of being off benefits and in paid employment – when we know that the labour market is discriminatory, damaging and devaluing of service users. Second, policymakers are taking recovery to mean ‘getting better’ in the sense of no longer needing any help or support. Of course this fits badly with the reality of many people’s experience where, just like other disabled people, they may need some ongoing support to live fully and equally and they may have particularly bad times, even though they can get past these with the right kind of help.

All this is why a new book from Canada assumes an especial importance for survivors in the UK and internationally in these difficult times. Mad Matters*, for the first time, pulls together the large and growing body of work – both activist and theoretical – that has been taking place in Canada to advance demedicalised approaches to madness and distress. The upfront use of the word ‘mad’ may be difficult for some mental health service users/survivors who have been on the receiving end of mainstream use of this term to demean and devalue them. But it is also a statement here that there is a commitment to reclaim both language and experience, that people are determined not to be coopted by the psychiatric system and that their critique seeks to stand outside it. This has rarely happened before and certainly not in such a far-reaching way as is represented by this book.

In my view it provides the most substantial, well-evidenced and inclusive discussion there has so far been of non-medicalised user-led understandings of madness and distress. It offers major insights internationally from the Canadian experience. What is also particularly helpful is that it draws on the perspectives of service users, practitioners, educators, researchers, activists and policy people. This is a really substantial book by people who bring professional, research and experiential expertise to the subject. It highlights the diversity of mad experience and viewpoints, the destructive impact and ineffectiveness of psychiatry, the emergence of survivor research and academic engagement. It helpfully problematises seductive but ultimately damaging ideas like ‘recovery’. Apart from its value for all concerned with ‘mental health’ issues – on both sides of the counter – it is likely to be of value in building bridges between survivors and disabled people, between disability and mad studies and between disability and survivor activism.

*Mad Matters: A critical reader in Canadian mad studies, (2013), edited by Brenda A. LeFrancois, Robert Menzies and Geoffrey Reaume, Toronto, Canada, Canadian Scholars’ Press Inc ISBN 978-1-55130-534-9  380pp  Price $49.95 Canadian  http://www.cspi.org/books/mad_matters

About the author

Peter Beresford is professor of social policy at Brunel University and chair of Shaping Our Lives, the national disabled people’s and service users’ organisation and network

 

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9 thoughts on “Independent Living, Psychiatric System Survivors and ‘Mad Matters’

  1. Peter Beresford has managed to leave me wanting more. I’ve felt for some time that the whole mental health field has gone backwards and moved further towards the medical model giving lip service to listening to people and their experience. For most of us, what we get offered are drugs and one size doesn’t fit all. In the community, not helped by the financial pressures, all we experience is a constant attempt to take support away as soon as possible and the use of community treatment orders to secure compliance. For all of us being in control of our lives is paramount but as Peter says that depends for all of us on the network of supports we depend on and can trust to look out for us through difficult times. Support may be sometimes practical but often mainly emotional and our interdependence includes our contributions whatever they are. Again as he says the current rhetoric, which demonises the need for help whether disabled physically, mentally or intellectually, labels people negatively if they are seen not to be contributing by paid work – but fails to appreciate the much wider contributions people make to each other and in their communities, let alone help this to happen. Recently, I heard of a young woman with learning disabilities who is involved in a local community group who was sent a letter to come to a (I think) DWP meeting but it clashed with the group’s meeting. Thinking the group meeting was the more important she didn’t go to the DWP one and then was sanctioned with benefits withdrawn. I’m sure her priorities were probably right, but the ‘one size fits all’ benefits system persists in failing to understand the supports different people need to manage their systems. We know disability adjustments’ failures continue unabated except with specific Court action. Take away these kinds of contributions and the costs really would be astronomical. The current pressures withdrawing benefits we know are just taking away vital supports for people and ironically will just throw people back on the psychiatric and other systems – far more costly, but importantly so damaging to people’s ability to retain their lives in the community. Someone many years ago said to me ‘what do you want to do make money or make shoes’ – and could it be that the pressure on everyone to make money has lost the plot completely. What is it we all value the most – it’s that interdependence that supports the relationships we have I’d suggest. I look forward to hearing more from Mad Matters.

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  3. The two worrying implications that you mention just really hit home how much I feel I’ve been duped by this whole ‘recovery’ idea. Although I’ve felt uncomfortable about how it’s progressed more recently than when it first started in Scotland I don’t have the clarify of thought I used to have which makes it very difficult to express exactly how I feel. For me you’ve summed it all up and it leaves me as a mental health professional and someone with lived experience disillusioned. I have been moving towards self-employment for a while now and this more than ever validates my reasons for moving on. The mental health sector works on policy, government support etc. and never seems truly independent and able to say ‘wait a minute, lets do this differently’. So, thanks for writing this.

  4. Peter is right about recovery. In any case, it largely makes no sense at all because for conditions like mine (and many others) there is no ‘cure’ in the usual sense of the word, just different degrees of managing (hopefully, successfully most of the time).
    I don’t think the disconnect with IL is completely down to survivors though. I know there is some disquiet about the term amongst survivors but to be honest, for far too long, the IL Movement itself never did enough to encompass the full range of experiences and identities amongst disabled people so it’s hardly surprising that this disconnect exists. I think that is a negative for all concerned because, together we are always stronger and there is more that unites than divides us in my view.

    My perspective may, admittedly, be slightly unusual in that I have spent a big part of my adult life working with the IL Movement as something of a ‘mad interloper’. I fully recognise what Peter is saying though because it was more than 10 years until I started to see myself as actually being part of the Movement and not just an ally, like Peter himself. (Indeed, it was a conversation with Peter that helped me to recognise that in the first place). Also, although it wasn’t something I was conscious of at the start, I can see now that the support I have put in place to help me manage my condition has in fact been very much influenced by IL in that it involves me paying someone to provide individually tailored support that I can access how and when I want. After years of trying (and failing) to find suitable support from NHS health professionals it has made a huge difference to my life. The irony is that the person I have now did in fact work in the NHS for 30 odd years but in an institutional setting (which, incidentally, he liked just as little as I do!!). I say it’s ironic because the skills that he has are in fact extremely useful to me but the difference now is that they are being used in a way that matches what I need rather than what the NHS thinks I need. Hopefully Personal Health Budgets might enable others to explore similar opportunities so that people get the support they actually want and need.

    Finally, personally, I don’t usually have any problem with the term ‘mad’ – although context is of course everything. If someone uses the term in a deliberately aggressive or discriminating way then I will experience that as oppressive. Used by friends – or indeed by myself, as in my Twitter profile – I see it as something of a badge of honour (although with large dollop of irony attached).

    Anyway, thanks to Peter for this very thought provoking blog. It certainly motivated me to post anyway – which always takes some doing on a Sunday!!

  5. I am mad, it is an essential and fundamental part of who I am. However, I am not hostile and unkind to others and I try to be as honest as social integrity would allow me to.
    Until I was about 45 years old I survived episodes of my madness by self -harming and often systematic pilgrimages to spiritual retreats where my mind would have space and time it needed to be unravelled from its dysfunctional darkness.
    Some personal life changing circumstances had me plummeted into professional mental health care and I became a service user and with that my career came to a sudden halt. The BA(Hons) and MSc that I had worked very hard for – with the help of self-harm and pilgrimage, were insignificant and obsolete to my new life as a service user.
    Psychiatric treatment slow and often gruelling helped me to understand why I am and appreciate who I am. And this is where I find the excerpt that I have read from the book failing. To my mind it does not emphasise the complex nature and principle of psychiatry in identifying what an individual’s mental health condition might be. From my own lived experience, I personally have some sympathy for the medical professionals, their role is a difficult one.
    But on the other hand, I whole heartedly agree with Peter Beresford that it is our governments and policy makers who are the culprits and should hang their head in shame. Can we have a mainstream model of socio-economic policy that is the bases for designing care policies that need medical professional intervention?
    I have been unemployed from mainstream work-force for nearly a decade. My life has become socially isolated because I am ashamed that I have to rely on welfare benefits. This is now my ‘dirty little secret’ not my madness.
    To keep my secret well hidden, I have immersed myself into every ‘user involvement project’ I can access, hence becoming ‘the professional service user’. Also, ‘user involvement’ is part of my medical care model that is meant to help me on towards recovery to work, which in turn is meant to elicit some sense of empathy from prospective employers. This practice is in itself discriminatory. What would be more beneficial and just is a realistic model of transition.
    From age 15¾ I have always worked and I have always been mad from a younger age. Why do I need a recovery model that would advance me into work? My madness has not changed though I have as a person, for the better I hope.
    Although for the most part I enjoy contributing to some of these ‘user involvement’ projects and even savours sporadic moments of feeling a sense of worthiness when I have to pay taxes, bottom line is that I would rather be an employable employed professional who is a mental health service user.
    My ‘user involvement experience indicates that I am not unique in this matter.
    Often when we talk about our personal experiences politicians construes it to be some sort of competitive notion between emotionalism v pragmatism and the latter always best fits their political agenda.

  6. When I see Peter Beresford comment on stuff I feel completely inadequate, but also completely inspired and willing to keep on trying. He makes everything so kind of easy to understand. In this wee piece I like especially how he manages to articulate so well the big disabling barriers to participation that are out there – like the ‘damaging’ and inequitable environment of employment that Government doesn’t even seem to realise is there. Or that people can simply fit stereotypes and be ‘made better’ or ‘get a job’ or maybe be rehabilitated. But – as the independent living movement has done – but I see mental health survivors included in the social model of disability and that the philosophy of independent living is used to keep battering down the over medical approach and assumptions about mental health survivors. Obviously always good to keep building more joined up thinking between survivors and disabled people.

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