The ethics of ethics

So I have to make my position very clear here.

I am in no way denying the need for an independent ethics approval process, within either the academy or the NHS. The need to ensure absolute protection for vulnerable groups and individuals is paramount. Ethics reviews also ensure research methodologies and rationale are robust. As such this process maintains and ideally improves the quality and scope of research over time as long as those reviewing submissions are up-to-date regarding the prevailing attitudes of the area of study they are examining.

Bringing me to the point that I want to make.

I am studying Mental Health Recovery at Masters level. The main values and principles of this concept are those of being person-centred, of empowering the individual, of moving away from the medical-model and avoiding labels. Instead, the philosophy of recovery is about allowing people the benefit of a self-determined identity. Most importantly, to me at least, it’s about returning to people their sense of agency and avoiding institutionalisation.

Why then, when I discuss with my supervisor my final dissertation do I find out that the fact that I am working with autistic people, automatically ensures that I have to get NHS ethics approval?

Being autistic is a difference, not a disorder, or an illness, or even a disability in itself. However, because the ‘label’ or God forbid, ‘diagnosis’ is made by a doctor this group of people that I belong to automatically classified as vulnerable.

You can be autistic and vulnerable, no doubt about it, but you can also be neurotypical and vulnerable. You don’t automatically need NHS ethics approval if you are working with neurotypical particpants.

My project was a self-selecting group of individuals who would not be sought through mental health providers because I did not wish to skew my data. Biases in medicine already exist towards a male-centred presentation and the fact that more women who receive a positive diagnosis tend to have more mental health distress and more severe traits of autism means I would not be able to explore what being autistic means to those who also identfy as women some or all of the time. Furthermore, I also wanted to include women who self identified as autistic because this is often a group that is missed in the official understanding of being autistic.

In both cases I was told I would need to seek NHS ethics approval, which usually takes six to nine months and therefore blocks my ability to carry out this research within the time constraints that I am bound by.

It makes me really angry when a whole group of people have their identity co-opted by doctors, researchers and sweeping statements made about their functioning, wellness and support networks. Surely the point to a recovery focus is that we begin to understand the different needs of the people we work within research, as well as in mental health provision and support? We need to stop assuming that everyone is going to run into trouble or conversely cope fine.

Self-identified autistic women who are struggling, who do need support, are then denied such because they don’t fit the stereotype that has been perpetuated by doctors and researchers for decades. The need to categorise people absolutely not only denies vulnerable individuals and families support but also potentially delays research that could help change this situation for the better.

Even though my masters would have been a small step along the path I hoped to tread, it would have given me a chance to commit to some exploratory research and scope out my ideas more practically for what I hope will become my PhD proposal. Instead, I have had to work within the confines of a virtual project which, although still a great chance to refine my thinking is not the same as actually testing some them.

Ethics are vital for the safety of participants and ensuring projects are of the highest quality, but in their current form, which is still governed by medical-model diagnostic assumptions we still have a long way to go before we can say our research is truly recovery-focused. Ultimately it becomes another gate kept by the say-so of psychiatrists rather than the genuine needs of the people who are intended to benefit.

The beginning…

This…

Researchers cannot assign value to one meaning without acknowledging the role that they personally play within this construction (Guba & Lincoln, 1989). Qualitative research has usefully attempted to acknowledge this limitation through reflexivity (MacBeth, 2001; Willig, 2001). Reflexive research requires an awareness of the researcher’s contribution to the
construction of meaning and the improbability of remaining neutral, impartial, and unconnected to one’s subject (Nightingale & Cromby, 1999).

People are more than their diagnoses.

“It was this prognosis of doom, this life sentence, this death before death that I instinctively rejected when the words “You are wrong” formed silently within me. With the wisdom of hindsight I understand why this moment in the psychiatrist’s office was a major turning point in my recovery process. When I rejected the prognosis of doom I simultaneously affirmed my worth and dignity.”

“And just as quickly as I turned away from the prophecy of doom, I found myself asking– so now what? In other words, I turned away from a hopeless path but also, at the same time, had to turn into something.”

Pat Deegan

The narrative of Pat Deegan recounting her own recovery journey from a place of deficit-based hopeless diagnosis has long inspired me, both personally and more recently, professionally.  Pat’s own recovery mission, to ‘become a doctor and make the mental health system that abused her work properly’ is similar to what I wish to achieve for autistic women who have been through a similarly negative experience with their own mental health and diagnosis. I have found a similar inspiration in taking the crappy life experiences I have had, which have nonetheless also been transformative, and delivered to me far more meaning and purpose than I could ever have found in my old life, and make something better for others out of them.

Professionally this is shaping into a PhD proposal that I hope will enable autistic women to be able to think more positively about themselves and their experiences or history. I wish to create an alternative narrative to that of a medicalised diagnosis; of which even the name makes you sound diseased. Most importantly I want this to be something that all women who identify as autistic can utilise, not just those who come to this place via a medical diagnosis. In this way, I am beginning to open out the idea of self-identification as a valid means of describing oneself as autistic as well as having the same bestowed by a doctor whose own perceptions of just what ‘autism’ is might be skewed by the research bias towards gendered male presentation anyway.

I want to focus on women because I think from what I have experienced and what others have told me about, that this is the group that gets one of the bummest deals of all bum deals. In thinking about women I have also wrestled with the concept of gender and so have had to accept that just as I find it intolerable that clinicians get to decide who is and is not autistic so it is not my place as a researcher to decide who is a woman or not. This is part of my decision to work within the participatory paradigm. Not only do I involve others with lived experience at every stage of the project, but I also have to accept that they will decide the factors of the research question itself. If someone with cis-made genitals identifies as a woman some of all of the time who am I to denigrate their primary experience?

Brown, Catana. Recovery and Wellness : Models of Hope and Empowerment for People with Mental Illness, Routledge, 2002. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/herts/detail.action?docID=1099395.

Dialogical practice

The idea of dialogue, in relation to my developing professional practice, and also within my research work, seems to be occurring more and more frequently. The Oxford English Dictionary defines a dialogue as either:

A conversation between two or more people as a feature of a book, play, or film. ‘the book consisted of a series of dialogues’ 

1.1 A discussion between two or more people or groups, especially one directed towards exploration of a particular subject or resolution of a problem. ‘the USA would enter into a direct dialogue with Vietnam’

However, both of these ideas are misaligned with the developing idea of dialogue that I am conceptualising.

The first place I encountered this idea was within the ‘innovation in practice’ module, where I compared the practices of Finnish ‘Open Dialogue’, a radical approach to the treatment of first episode psychosis created out of a number of different therapeutic systems developed over overall support and intervention methodology that has transformed mental and general healthcare in the Lapland region that it originated from. Longitudinal studies of Open Dialogue have demonstrated a capacity to blow ‘treatment as usual approaches’ out of the water in terms of functional and long-term recovery.

The next encounter I had with dialogue was my involvement in Autism Dialogue, a series of events organised in Sheffield based upon the principles of Bohm Dialogue. These events were a series of dialogues with no set agenda but with a selective approach to participation in which autistic and non-autistic participants were brought together to share ideas and insight with one another. This collective meaning grew from moment to moment and from event to event, building into a unique experience quite unlike anything I have had before. There were no formal methods of recording the contributions made, but I know that myself and several others have had their perceptions fundamentally altered by the process and that some really positive developments and relationships have resulted.

the third instance I have encountered dialogue was this evening in the foreword of the book ‘Reason and Rigour; how conceptual frameworks guide research.’ which describes “a dialectic stance for research, recognising that different philosophical, theoretical and methodological approaches have different strengths and limitations and that it is often most productive to try to engage these approaches with one another in ways that provide generative insight and a deeper understanding that any single theory or approach can make.” 

In all these ways, dialogue, at least to me seems to refer to something deeper and more profound than the dictionary definition given, which seems to concern itself with solving problems or the exchange of information at quite a functional level.

Dialogue as I am growing to comprehend it is a process of unfolding and understanding. It is about finding the meaning within yourself, as a person in relation to your own beliefs, with other humans and ideas and about all these things in relation to the world around you. These ideas, however, can change from moment to moment, with subtle shifts and major movements. The power of dialogue is developing an awareness of this process, of the ontological origin of your own perspective and the matter of dialogue as it occurs. So much ‘stuff’ in this world is, and has been, take for granted, from the idea that mental patients cannot make decisions for themselves to that still held by many people that you automatically consent to sex when you get married. Unless this is raised into the level of awareness, both individually and to a collective consciousness in a group or even social level we cannot begin to unpick the complexities of our contemporary experience. Furthermore, as each of us holds multiple identities which shift and change I would argue that dialogue is an essential tool for each of us to learn in order to learn and contribute to if we are to be able to cope and filter the terabytes of ‘chatter’ our digital world exposes us to each day.

Bringing this back to my own work, in developing my own methodological stance towards my final project I cannot work within the emancipatory paradigm mainly because I don’t consider myself disabled or hold that I have to subscribe to any model of disability as is suggested researchers adopting this approach should. My aim is to take a participatory stance whilst using the principles of Autism Dialogue to explore the unique relationship between myself and my counterparts. I will not describe myself in this work as a researcher, but rather a dialogical practitioner who contributes to a shared process of understanding that extends out beyond a shared verbal exchange and instead applies the same ideals and values to the development of the data and the interpretation of the finding and recommendations I make.

I know what I think I might find, but I have to put that aside, as I did when I entered dialogue and engage with what I find, even if it is challenging or even something I would usually choose not to engage with.

Reference:

Sharon, M., & Matthew, R. (2011). Reason and Rigor: How Conceptual Frameworks Guide Research.