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.

DLINKS library logo

Derbyshire is a large county with a diverse spread of population and geography. Much of this is covered by the Derbyshire Community Foundation Trust, whose staff can struggle to reach a medical library in the course of their work, given commuting time.

Collaborating to solve this problem, the three library services across the different trusts in the county have joined together to create the DLINKS (Derbyshire NHS libraries and knowledge service), within which staff from DCFT can use the facilities at any of the trusts in Derby City or Chesterfield. This also presents opportunities for the sharing of expertise resources and knowledge within all three organisations, a general direction of travel within NHS Sustainability and Transformation Plans anyway.

 

 

I have regularly used the library at DHCFT since beginning my MSc and have in many respects become a regular fixture. Marie Hickman, the knowledge manager, approached me about developing the logo for the new DLINKS project, which I gladly agreed to do, calling in the help of Guy Evans another creative based in Derby.

Guy and I initially met with the three head librarians for a brainstorming session. It quickly became clear that there were a number of concepts that required inclusion:

  • The three organisations working together collectively
  • The geographical basis across Derbyshire
  • The representation of knowledge and learning
  • An abstract image that would be distinct from the branding of each individual Foundation Trust

After some sketching, the idea of a Venn diagram type logo was settled upon and we suggested the colour scheme from the Derbyshire flag of bright gold, blue and, green, reminiscent of the landscapes of the county.

Guy and I developed a number of different design iterations, working remotely given the widespread of the stakeholders. A final brand was agreed, together with the placement of the project name.

The logo design concept was taken forward into all design for the print and digital presence for the project. The website for DLINKs, including the logo, can be viewed here www.dchslibrary.co.uk.

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).

Autism Dialogue Conference 2018

This year I have participated in the Autism Dialogue programme developed by Jonny Drury, in Sheffield, based upon Bohm Dialogue principles that are widely used in business and academia. The inaugural conference took place on the 14th December 2018 and I was invited to speak about the impression that AD had on me. The process of participating in Autism Dialogue has created a lasting and positive change in me that is still working its way through.

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The cave paintings at Chauvet in France demonstrate a new development in human artistic ability around the time of the major ice ages in Europe. These incredibly beautiful, photorealistic depictions were vastly more sophisticated than the previous simpler images, which we might typically recognise if we were asked to think about such early art.

Researchers from the University of York have aligned this new ability within a cluster of others that emerged at about the same time. Namely those of being able to focus intensely on one thing when making complex flint tools, to remember large swathes of terrain in order to hunt for food  that may be under cover of snow and over a much greater area because of animals becoming scarcer, and the ability to enjoy one’s own company more, because of longer darker nights and poorer weather making going outside of your shelter risky and uncomfortable. The same researchers have examined contemporary populations and have identified autistic people as being the closest fit in our own abilities and preferences to these new iterations of humanity that prevailed about thirty thousand years ago.

So to make this point as literally as I can, it seems autistic traits developed as a result of natural selection in order to give the people with them an evolutionary advantage under very specific conditions. We, autistic people, may have been instrumental in ensuring the survival of our species, which is a pretty big deal.

Thus, both modern science and art can appreciate very vividly the contributions an autistic version of humanity has made for the benefit and advancement of all of humankind.

I reflect with sadness that the same cannot be said for many of our peers today in the 21st Century where being autistic  is negatively stereotyped, stigmatised and regarded as a burden because of the cost associated with supporting people who are disabled by their inability to live in a world that can be distressing for them but which is also convinced of it’s own inherent validity in many instances.

I, we, have experienced a plethora of emotions, both collectively and individually. All of these became contents for the vessel of exploration that Dialogical Practice revealed itself to me to be. Perhaps the thing that struck me the most was the intensity of the perception in the room. At all events, autistic people were in the majority and our monotropic concentration that was focussed on the shared dialogue was palpable in its intensity. Similarly, the gentle stimming that many autistic participants subtly engaged in was catching. Our nonautistic peers commented how they felt comfortable engaging in their own stims which they would publically pack away in the presence of others.

I feel the Autism Dialogue events enabled a space for all human participants to experience autism in their own way, This unadulterated, unmasked undiminished autistic experience allowed us to explore its nuances and limits in a very visceral way. Ultimately though I left with a greater sense of who I am, a sense that there are others like me and that there is a beauty in my difference and our differences that has the potentiality to make a difference that I hope, at some point will be recognised as universally as the cave paintings in Chauvet are today.

Autism is a construct; a descriptive word. Today people with these characteristics are widely considered disabled and often lacking. Thirty thousand years ago we may have been revered as mystics, artisans or clan hunters if current research is correct. This makes me think that little by little and using tools and experiences such as Autism Dialogue we have a chance to chip away at the negative perception ‘Autism’ creates and transform it into something powerful and positive once more. Autism Dialogue has given me hope for the future in seeing myself and my community in this way and a new understanding of autistic beauty. I would like to thank Jonny for his work in making this happen and allowing me to be a part of it.

Image: https://upload.wikimedia.org/wikipedia/commons/0/0d/Chauvet%C2%B4s_cave_horses.jpg

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.

Moving on (written in April 2018)

The house we have lived in since we arrived in Derby in December 2012 has been sold and we are in the process of packing up to move on. We have been so lucky to secure a council property, just down the road from where we live at the moment. Although our current property and my son’s school will be a short drive away, much will remain the same and I am sure that we will adapt very quickly.

The new house is slightly smaller than our current house which was a worry, to begin with, however, given that we have run a home business and I have also been in the same space (with a young child) for much of it there has been a much bigger pressure on the space we are in. We have access to a lot more space now. My partner has a space for his business away from our home, I have an allotment which is developing into a wonderful place to be. There is much less demand upon our new home. It can be a place for my family to come together in, rather than being a sick-room, a photography studio, a warehouse and packing-space, a play-room.

Our move to Derby was not one we planned or necessarily wanted at the time. It was very difficult. We moved and renovated a property with a three-month-old baby and the stress eventually made me so distressed I became suicidal and spent four months in a mother and baby psychiatric unit. The house was made our home although it has never really ever been ours as it was jointly owned by an ex-partner who disappeared for a number of years, only to reappear waving a court order when the house was out of negative equity.

We have dealt with everything that life has thrown at us in the last six years – problem neighbours, mental and physical health issues which have included about nine hospitalisations in total. At times, the only thing keeping Mark and I together was a little boy asleep upstairs, but we have triumphed and emerged stronger as a result.

Despite making the best of our house here, we always resisted spending too much money on it, just in case what did transpire happened as we feared it might. Now I am moving, the stuff that I dislike about our current space that I stuffed down is reasserting itself and I am glad to know that we are finally moving to our forever home. I am going to enjoy making this space our own, truly ours, in a way we have not been able to here.

Most importantly I am so happy that we have met all the crap that life and the universe have thrown at us. We can quite rightfully stick our fingers up at the naysayers who guaranteed we would never make it.

I love my family so much. We have moved forwards together and can begin the next chapter of our lives far better prepared than I could ever have hoped for.

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.

A light just left the world (written in May 2018)

 

I found out this afternoon that my ex-partner of three years, Ian, died unexpectedly in his home 2 days ago.

I lived with Ian for three years in my early twenties and our dating caused a bit of a scandal as he was 23 years older than me – 45 when we got together. We had some ferocious arguments, but Ian introduced me to lots of things that are still important to me today. Kink. Paul Simon. And learning to stay true to your dreams.

Ian got frustrated with me a lot of the time, because I struggled with self-belief like he did his own. He was always frustrated living in the UK and for the last eight years had been living in Bulgaria in abject poverty by standards in the UK, but this was where he belonged (in Bulgaria, not in abject poverty, although he may disagree with me on this last point!), not surveying uPVC windows in Birmingham worrying about his tax bill. He did eventually sort HMRC out after I nagged him enough (he did it after we split up) and he thanked me for it too, said it helped to take a lot of worry off his mind.

I’d only seen Ian twice in the last ten years, once the day before he left and again about 12 months ago for a drink. I was going to see him next week and take Mylo to meet him because he never did get the chance.  I found out messaging him through Facebook and his sister picked up and asked me to give him a call.

My undiagnosed autism made things hard for both of us, but we kept in touch and worked through the stuff that made us separate.

I am going to miss Ian very very much. He loved a drink, and a smoke (of various kinds) and we had some wicked house parties when we were together. He liked wearing ladies lacy topped stockings, which he won’t mind me telling you about now but would have killed me if he was still alive.

Ni-night babe. I love you and I’m going to miss you so so much.

 

The latest…

Things have been a bit quiet on my blog for the last six months. A lot has happened, mainly positive, and with some challenges. The main change has been a house move. We still live in Derby but the house we were in had to be sold because of being owned by my partner and his ex-girlfriend who wanted the release equity, via a County Court case, which was quite stressful as you might imagine.

We were declared homeless in January and were lucky enough to secure a council house about ten minutes away from our previous home, meaning M could stay in the same school and all my support could stay in place.

Unfortunately life threw as a slight curve ball as we discovered there was still extensive work to do four days before we were due to move. When I mean extensive I am talking about rising damp throughout the ground floor, a rotten mouldy kitchen and woodwork caused by the damp as well as a whole host of other smaller jobs to complete.

Rather than my relaxed summer reading and prepping for my thesis I instead spent it trying to keep my head above water emotionally whilst project managing a major renovation and negotiating a compensation settlement. Cue another spell under the crisis team and much stress, but I am pleased to say that we got through and I am now trying to get everything else back into order whilst still playing catch up with my new uni term’s work.

On the positive side. We now have a home that noone has any claim over. We have got rid of the rather stressful ex-partner who had been causing stress since I was pregnant; over six years in total. We are no longer running a business from our home and finally have some stability to that space without multiple demands upon it and us as a family. I am getting back into my allotment and have found someone to share the plot with me, with the added advantage that they are a winemaker and novice forager too!

All-in-all it has been a tough six months but the important thing is that I, we, got through. Things that would have caused me to end up as an inpatient didn’t have anywhere near as bad an impact as it would have previously. It is good and satisfying to know that I have moved on and have healed, truly in the Buddhist sense of ‘this too shall pass’. Most importantly the last six months, despite the extra stress, seem to have cemented my primary relationship. Although I still consider myself to be polyamerous I have realised that this is enough for the moment and the forseeable future.

I am happy.

 

 

 

My mental wellbeing: a visual reminder

 

My mental wellness wheel
Capturing with imagery what was important to me when I was very ill in 2013. A great reminder of what I have overcome.

Tomorrow I facilitate a workshop in which women with perinatal mental distress will be asked to explore their health journeys visually. This caused me to remember a similar collage that I created at the request of a wonderfully supportive nurse to represent my own health and well-being needs and challenges.

it is an honour to have progressed far enough to be able to help others in a similar way along their own path.