This week we will be posting a series of responses to Angela Woods‘, Akiko Hart‘s and Helen Spandler‘s article The Recovery Narrative: Politics and Possibilities of a Genre. The responses take different stances towards the recovery narrative and are written by activists, survivors, and academics from multiple disciplines. In this first piece, activists Kaz DeWolfe and The Borderline Academic unpick the pressures of adhering to “consumer/user” and “survivor” recovery narratives.
We both greatly appreciate the recent article, “The Recovery Narrative: Politics and Possibilities of a Genre.” As activists in the U.S. consumer/survivor/ex-patient movement and workers in consumer/survivor run organizations, the notion of a “recovery narrative” genre deeply resonated with us both. We feel that the notion of a “recovery narrative” is pervasive in almost all corners of the mental health activism landscape.
We especially appreciated its focus on both “consumer/user” narratives and “survivor” recovery narratives. While most mental health activists, researchers, and practitioners are generally aware of “consumer/user” narratives of recovery – i.e. those that center on a person’s return to wellness or able-mindedness through medical interventions and traditional therapies – there is little awareness or discussion of “survivor” recovery narratives. In our own work, we have found that there is an equal amount of pressure to perform a particular recovery narrative regardless of one’s political affiliation or subgroup within the larger movement.
While “consumers” are encouraged to share a narrative that demonstrates the value of traditional psychiatric services, those on the “survivor” side are often pressured to share a narrative that serves the opposite purpose. Survivor recovery narratives often take the form of an individual who was once an able-minded, able-bodied, and productive citizen, who then began to struggle due to trauma or life hardships, and prescribed psychiatric medication as a result. The psychiatric medication lowered their productivity and functioning within the workplace and nuclear family. The prevailing medical model conceptualized their experiences as symptoms of an illness, which limited their ability to process their trauma and find meaning. The recovery process is facilitated through rejecting their diagnosis, coming off psychiatric drugs, and through realizing that they have the tools to cope with life’s challenges and problems without the use of drugs.
As activists who have had negative experiences with psychiatric medications (and who have expressed oppositional stances toward the use of involuntary medication), we have felt pressured to conform to this particular narrative. We are both employed by organizations that center survivor perspectives and highlight survivor narratives. Wanting or needing to be paid for the work we do within the survivor community becomes an added level of pressure, in addition to the social pressure within the broader social movement.
What we have come to realize about both of these kinds of recovery narratives is that they are not that different. They both reify a capitalist definition of recovery and wellness – one that is tied to being productive in the workplace and adhering to a role in the nuclear family structure. Whether the mechanism of recovery involves taking psychiatric medication or coming off psychiatric medication, the key transformation in the story revolves around going from someone who is unproductive, dependent on others, etc. to someone who is contributing economically, supporting a family, etc.
The recovery narratives that are published and shared widely never go, “I was working 60 hours a week and I was miserable, so I quit my job, went on disability, and now I’m doing okay” or “I was hiding my voices and trying to pass as sane so I wouldn’t make anyone in my family uncomfortable, and I hated it, so I decided to leave and now I can finally be myself.” The narratives are almost always, “I was on disability, too depressed to go to work, and now I am working a 40-hour week and I am a great wife/husband/mother/father.” Being disabled, and proudly so, is rarely included in the narratives shared by either community.
But what happens when you don’t fit into this kind of “recovery narrative”? What if you are still struggling to get out of bed or be productive, and either coming off medication or being on medication/getting therapy has not changed this? What if you don’t want to recover? Or what it to you, recovery means accepting yourself as you are – even if this means you are unproductive and unattached to a nuclear family – and surrounding yourself with people who do not value you based on your productivity? Unfortunately, these kinds of narratives are not only devalued but actively suppressed.
During our time in the movement, we have been discouraged from reaching out and being authentic about our current struggles because, “You’re off your meds – we need to show people that they’ll get better once they get off their meds.” We have been told that our stories are not useful, that they do not serve a political or economic purpose, or that they are not deserving of sympathy/empathy from an audience. “People who don’t work hard are just not likeable narrators,” we are told. Or we are told that in order to be effective advocates we need to be able to demonstrate professionalism, level-headedness, to “pass as sane” or show that we are recovered. We’re reminded that people won’t take us seriously if we are visibly in distress, if our madness becomes visible.
About a year ago we started Radical Abolitionist, a cognitive liberty blogspace. When it was conceived, we imagined sharing stories of resistance to paternalism and force, not stories of recovery. Narrative is an important tool of any movement, and in advocating for civil rights we need much more than just recovery narratives. We need victim narratives, liberation narratives, resistance narratives, accountability narratives, restorative justice narratives, prophetic narratives, acceptance narratives, inclusion narratives, even vengeance narratives. Our movement will grow and thrive when everyone who is marginalized by sanism and ableism has a voice with resonance, whether it conforms to a prescribed narrative or not.
Kaz DeWolfe and The Borderline Academic are activists, advocates, and co-founders of Radical Abolitionist, a cognitive liberty blogspace.
I find this discussion illuminating – and the possibility of recovery narrative as a genre very exciting. I love reading memoirs of all sorts – there is always so much to be learned from the stories of how others have lived their lives. I wrote my own memoir out of what felt like necessity. It was partly survivor’s guilt, partly a need to communicate what had happened in my life to lead me to being diagnosed with schizophrenia – a term that made me feel as though I was no longer human. And I named my memoir ‘Surviving Schizophrenia’ for no other reason than that I wanted it to sit alongside E. Fuller Torrey’s book of the same name, which I despised for reasons that I can no longer remember clearly (but which were something to do with the dehumanising of the person with the label, which I felt he encouraged).
I published my book eight years ago and I have changed since, in many ways. When I wrote it, I wanted readers to understand that I had survived the label, more than the illness itself – it was the forcing of these things upon me, the label, the medication, that I felt instinctively to be wrong. Following the publication, I joined several public campaigns – Rethink, Mind, Time to Change, endeavouring to get my points across – that people should not be written off, that no-one could foresee anybody else’s future and that the diagnosis of schizophrenia is intensely damaging, even inhumane. A few years later I quit all these organisations, realising that they had their own agendas – they wanted to help the people they termed ‘mentally ill’ by getting them access to services and benefits. I wanted to help others to see that they were suffering from emotional distress, not an illness or a disease, and that the manifestations of their conditions were normal human responses to various traumas – that they were normal humans.
In any case, I had my family to look after. Not everyone wants a family but I did, and I was horrified at the thought that my children would never have existed if I had accepted the views of the medical professionals who told me that I would never get better and so on (I won’t repeat all my grievances here!).
What I am trying to say now is that I do understand more clearly these days that there is no one form of recovery. But also, there is no one form of ‘schizophrenia’ or ‘bi-polar disorder’ – there are just people, all getting through life in their own ways. An alcoholic copes in his/her own manner – but nobody makes them drink. So, those labelled mentally ill should not be made to take drugs, especially by force, and especially without being warned of the consequences.
I realised recently that, in a way, the ‘illness’ has worked for me, because it has given me time to raise my family, undistracted by the necessity to work outside the home (the diagnosis ruled out the possibility of the sort of work that would pay enough to be worthwhile). Being at home with my children has been, for me, intensely rewarding and fulfilling. However, the damage done to me by the label has outweighed the benefits of it by far. It has taken away so many choices – so much respect. Friendships have fallen by the wayside. My confidence has suffered – at my lowest point I had barely any sense of who I was, which is why I accepted the psychiatrists’ version of me for so long…
It’s all history now. But there is, also, so much work still to do. I never want my children to fear that they will get ‘schizophrenia’ or for others to convince them that they are mad. I never want anybody’s children to go through the terror and helplessness which I felt, as an inpatient in what was termed a ‘hospital’.
I want young people to know that if they are feeling anxious, that’s normal, if their thoughts spiral into panic that’s normal too, and that there are strategies to help before any of these symptoms spiral out of control.
So, I need to re-enter the fray somehow – but this time, I won’t ally myself with any organisations who claim to understand mental illness but are really as much in the dark as anyone else who has not been through the experience themselves. I’m not sure quite how I will get heard – I might need to write another book!
The difficulty begins when we start defining groups of people that have little to nothing in common as “disordered”. The truth is, a “recovery narrative” is completely dependent on the values and priorities and skills and limitations of each individual person involved. The psychiatric mindset is, indeed, powerfully informed by the assumption that each person must be productive and “adjusted” to the current society, and that any deviation from this is a “disease state” that must be “treated” in order to regain “normalcy.” Those who fail to regain “normalcy” (as defined by being a non-rebellious taxpaying worker who is at least marginally OK with his/her life, or at least doesn’t complain about it too much) are regarded as failures – not failures of the system, or even failures of psychiatry to “fix,” but personal failures who have no value to society.
Until we stop defining people’s needs and values and priorities for them, or until we stop ALLOWING people to define our needs and values and priorities for us, the “mental health narrative” will continue to create destruction as we are all forced to follow the neoliberal agenda or be defined as irrelevant.