To remind readers, the first section of this blog is usually given over to academic work as submitted by me to the University of Salford’s Professional Doctoral Programme. This article is no exception and it is the submission for the “Leader as Researcher” module. I have subsequently decided to alter my research project but despite this I would value your comments.
Just thirty six years after the autistic condition was first reported in academic literature, Wing and Gould published their pivotal study of autistic children in London (1979). Still profoundly influential on research and practice, it identified the “Triad of Impairments”. For the record, they are (in no deliberate order): impairments of social interaction, language impairment and repetitive or stereotyped activities. Now it is only in slight jest that the Triad of Impairments are often identified as health, social care and education.
This article critically analyses my proposed doctoral research in the context of a burgeoning private practice in practice, training and consultancy (see Appendix A), examines the position and role of current research leadership in the field and provides a concluding main section which will draw different perspectives together and in the process identify the most prominent gap in research and with it explore central issues of power (including my own) and a direct challenge to established practice.
Structurally it will commence with a description of the proposed project and an examination of some of the requirements to make the guiding vision worthy of doctoral consideration, how the research could be translated into practice and some ideas as to how the concept is to reach its intended communities. There will be an explanation of the chosen philosophical, ontological and epistemological approaches (drawing on Wittgenstein and the autoethnographic tradition) and their appropriateness with regard to confronting the balance of power in this particular field of research and practice (the ‘expert blind spot’); its use of ‘thick text’ and ultimately bringing the voices of autism from the margins to the centre. As it is an autoethnographic study, it is helpful to examine issues of power and reflexivity ‘in tandem’ due to the personal nature of the chosen approach and the two concepts. There will be a discussion on issues of ethics and translocational positionality with an added context of vulnerability and emotion in a deeply personal method and subject.
The analysis is best introduced by placing the project, albeit briefly, in a professional/ autobiographical context.
Prominent elements of my biography and the way in which it fits into my intended research project can be found in Shaping Autism Research (2016), summarizing as it does salient aspects of my personal history, particularly in childhood and youth; its link to a professional context lies not in my established position and source of income but the burgeoning “Bananas In The Pianos” locum, training and consultancy business which commenced trading in February of this year (see Appendix A). Both of the projects (the research and the business) are being undertaken partially in recognition of the dearth of academic work in the field of autism advocacy and thence an attempt to address that gap in the body of knowledge (especially in the ‘lived experience’ of the condition) and partially in order to provide credibility and vigour in building the business. In this sense, to adapt a popular idiom, one academic hand will wash the professional other and vice versa.
The proposal is as follows:
“An investigation of the therapeutic effect of advocacy for vulnerable users of health, social care and education service users, using the lived experience of adult autistic people through the medium of an auto-ethnographic method of enquiry.”
To describe the proposed project: the study aims to develop an original method of qualitative analysis coherent with its interpretivist principles. The objective is to use these methods to help establish a new paradigm in the emerging field of autism advocacy. If one intends to introduce new models of practice one has to employ new ways of building theory. The limitations of existing methodologies are first discussed to justify the need for a novel approach. To illustrate this approach, primary evidence is presented using the new methodology and the theory is built concurrently (or contemporaneously) from interviews, reflective accounts (including personal) and data from the literature, limited as it is.
It is intended that the first main body of the work (which will follow its own introduction and an exhaustive definition of terms) will be a critical examination of research articles on the subject of autism advocacy followed by semi-structured interviews of individuals who have been a subject of this type of service. There will then be a group interview of as many of the interview participants as can be practically convened, so as to allow the participants to develop their contributions made in their individual interviews, using their fellow participants to cross fertilise their ideas. All of the sets of “material”, or types of data, will be sampled purposively, a method of non-probability sampling wherein the researcher makes choices of their sample based on their judgement; it is also known as “judgemental” sampling. This will be in the “critical case” variant of the method:
“Critical case sampling is a type of purposive sampling technique that is particularly useful in exploratory qualitative research, research with limited resources, as well as research where a single case (or small number of cases) can be decisive in explaining the phenomenon of interest.”
Lund Research 2012.
Without making prior assumptions of the results of the three processes, it is intended that an evidence-cased ‘service user’-centred theory of autism advocacy will start to emerge as part of a wider new paradigm of autism.
Advocacy is now enshrined as good practice within services for all users whose mental capacity is thought to be impaired or their communication skills are significantly compromised, within services such as mental health or dementia. The use of advocacy is indeed a mandatory element for many Best Interest and Deprivation Of Liberty Safeguarding decisions and as such is an element of social justice enshrined in the health and social care system (Lee 2007).
Such involvement is seen as ethically and politically desirable but the actual therapeutic outcomes for the service users do not appear to be widely discussed. That is, advocacy appears to be seen as an end in itself (‘giving a voice to the voiceless’) rather than part of the process of care, rehabilitation, integration. A “Google” search of, for example, “therapeutic effects of mental health advocacy” yields remarks, reflections and guidelines, of a largely anecdotal nature, of its importance in improving the experience of service use but there is scant evidence of its long term benefits. A similar search for adult autism advocacy yields no results for that heading. There are results for the transition from childhood and for people who are autistic but whose main challenges lie in their co-existing learning disabilities- and this is entirely commendable- but none of them provide results or even a description of advocacy for adults whose main presenting condition is their autism and no element of a service user voice. Further library searches yield more results but quantitatively few and less still of a positive or encouraging nature.
This surprising (even disturbing) discovery suggests that the “professional practice setting” is one which is in its infancy (on a micro and macro level) and any research undertaken at this stage has the potential to be profoundly informative in its development to maturity.
My initial primary objective was to address the question: “Does advocacy lead to better long-term outcomes for vulnerable people” (with specific reference to autistic people)? My subsequent findings (or the lack of them) has led me to dwell on the lived experience due to the absence of autistic voices either in the research or ‘grey material’, leading to an ethnographic approach further refined, due to my own neurology and challenges I have faced, to an auto-ethnographic approach. The null hypothesis, albeit in a qualitative context and quite anecdotal, is that advocacy for autistic people is weakened due its absence of authentic voices and it follows that the ‘A’ hypothesis would be that practice will be more meaningful (more correspondent with the priorities and aspirations of its service users) and effective (achieving its objectives) if that disconnection is addressed and eliminated.
Itknonen and Ream (2013) clearly identify the rapid rise of autism as a subject for debate and policy from the nineteen seventies decade onwards, further boosted by the sharp rise in diagnoses (as opposed to actual incidence) in the period from the outset of the millennium: approximately one child in one hundred and fifty in 2000 to one child in sixty eight by 2012 in the United States of America (Centre for Disease Control and Prevention 2016). Itknonen and Ream (op. cit) also point out, somewhat uncritically, that the rise in advocacy (again using the United States of America as their palate) is child- and by thus by default parent-orientated, litigation and service access-centred and modelled on themes of pain and loss. (Even referred to as “pain-loss” advocacy in legal terms.) With the discourse around themes such as these, it is little surprise that many years later Dowson et al (2007), in their contemporaneous study of advocacy access for adult autistics in the North West of England found a picture of failure and victimisation at school, referrals being refused, service models basing around unsuitable medical categories, the inevitable difficulties in funding and accountability, poor to no understanding of the value of advocacy and worst of all little hope or even resolution from any party to improve the situation. Little wonder that the subjects of the study reported enhanced levels of every measure of social and economic marginalisation in their adulthood. By way of further illustration, the National Autistic Society (2016) report an eighty five per cent level of unemployment among working age people on the spectrum in the United Kingdom; a figure which would be unacceptable for any other group.
Practice is rooted, therefore, in the discourse as stated and so is its malaise. Otherwise stated, it is an ontological issue. Using twentieth philosopher Wittgenstein as a guide (Brochhausen 2006) we can see reality as a ‘state of affairs’ which are combinations of objects (basic parts of phenomenae) which cannot be further simplified: language exists to describe these states of affairs and this consists of propositions of varying meanings and complexities. So- reality cannot be entirely understood by language and we have work within a combination of interpretation and other symbols (such as our actions) to understand it- but if truth or reality cannot be fully comprehended by language we have to make a common sense of language (giving a nod to phenomenology) when modelling our actions such as allocating or canvassing resources, drafting policies or educating the emerging generation of professionals. This is further complicated when we consider that neurodiverse people experience language differently and are further disadvantaged in the process. This dissonance is likely to be the most significant factor which may affect my proposed research. The redirection of the ontology from “cure-talk”, “pain-loss advocacy”, the culture of “indistinguishability”, of disease, epidemic and disability to support, inclusion and a focus on ability- long since adapted in other fields of health and social care research yet somehow delayed in this.
It is for this reason that the auto ethnographic approach is to be adapted. Constructivism expresses the idea that mental structures and operations are actively constructed by one’s mind rather than passively acquired.
Jensen-Hart and Williams (2010) provide a definition:
“Autoethnography is a term used to describe a research approach whereby the author/researcher draws on his or her own experiences written in the form of personal narratives to extend new knowledge”
From the view of the researcher, Wall (2006) explains:
“Traditional scientific approaches, still very much at play today, require researchers to minimize their selves, viewing self as a contaminant and attempting to transcend and deny it. The researcher ostensibly puts bias and subjectivity aside in the scientific research process by denying his or her identity.”
From the view of the ‘researched’ Dashper (2015) suggests:
“Autoethnography is a method that may enable researchers to begin to challenge the dominance of traditional academic forms of writing and researching and open up possibilities for including other voices and perspectives, including those of the researcher herself, and thus begin to break down some of the power divide between researched ‘others’ and all-knowing researcher.”
In Wall’s (op.cit.) further explanation, this approach is an epistemological trend which poses an alternative to positivist perspectives which still insist that research is an elite closed shop driven by quantitative and experimental processes; that social phenomenae can and indeed must be reported with the scientific detachment given to studies of, say, genetics or astrophysics.
This approach has its roots in post modernism and critical theory and as such holds appeal for researchers who are pursuing those erstwhile marginal voices who have otherwise failed to pass the filter of traditional research methods (feminist researchers being conspicuous examples) and is now even being accepted among professional educators and leaders in health, social care and education for reflection, supervision and training purposes (Jensen-Hart and Williams op.cit., Granger 2011, Farrell et al 2011). It provides an opportunity for a research product which contains a democratic iterative structure and thick content. It follows axiomatically that autistic researchers of the autistic experience will be drawn to this approach.
Ponterotto (2006) describes thick content (or thick description) thus,
“1. “Thick description” involves accurately describing and interpreting social actions within the appropriate context in which the social action took place.
- “Thick description” captures the thoughts, emotions, and web of social interaction among observed participants in their operating context.
- A central feature to interpreting social actions entails assigning motivations and intentions for the said social actions.
- The context for, and the specifics of, the social action are so well described that the reader experiences a sense of verisimilitude as they read the researcher’s account. For Denzin (1989), verisimilitude refers to “truthlike statements that 543 The Qualitative Report September 2006 produce for readers the feeling that they have experienced, or could experience, the events being described.” (pp. 83-84)
- “Thick description” of social actions promotes “thick interpretation” of these actions, which lead to “thick meaning” of the findings that resonate with readers (Ponterotto & Grieger, in press). I like to use the metaphor of a tree to explain the interconnection of these three concepts. The “thick description” constitutes the roots of the tree that nourish and feed “thick interpretation,” represented by the solid trunk of the tree, which in turn feeds the branches and leaves of the tree, which represent the “thick meaning.” It is the branches and leaves that most capture the viewers’ attention, as is the case with “thick meaning,” which grasps the attention of the reader of the study.”
We can see, therefore, that attempting thick content (or description) will help to bring the accuracy, insight, prompts for further research and practice, authenticity and substance in the research required to achieve the stimulus for meaningful and effective practice as mentioned previously in this work.
If we can agree, therefore, that the inclusion of and detailed attention to our research subjects is central to the proposal regarding its relevance to professional practice, equal prominence needs to be given to our involvement with regard to the researcher’s on perspectives and assumptions; an especially acute consideration given the chosen epistemology. Specifically, we have to examine issues of reflexivity, ethics and power. Reflexivity seems to have as many definitions as people who describe it but a helpful summary is provided by Enosh and Ben-Ari (2016) when they describe “a constant movement in and out of one’s experience” and “deliberate awareness using contemplation and intentional activity, recognising differences and generating knowledge” This extremely positive take on reflexivity argues that being ‘reflexive’ is not necessarily something to make us wary, it can be used to create “liminal spaces” in the iterative process, promoting new subject centered ideas and understanding and become a vital tool in informing practice. The other extreme could be found in autoethnographic research which is entirely autobiographical, such as Bruce (2010) whose personalised study of her early menopause or Dapsher’s (2015) account of her recovery from a show jumping injury serve as a fascinating narratives and have their legitimate place in the body of work but my proposal is by its very nature a collaborative project of an autistic researcher working other autistic people. Dapsher (ibid.) does, however, raise some important ethical issues about the revealing of the self in the process and the possibility of co-mingling data (mixing one’s own experience with those of the other people in the study) and, given my relative power in the process, allowing my experiences to predominate. In a study such as mine which aims to promote inclusion of a marginalized group, that would the most hypocritical of consequences. She also advances the potential hazards of making oneself vulnerable in the process. This is expanded in some detail by emerald and Carpenter (2015) whose study of autism mothers (i.e. mothers of autistic people) stresses the emotional impact of this kind of work- and the requirement for self awareness and seeking support. Their most interesting posits are of a more positive nature, as the approach suggests “emotions as data” (reporting how the subjects feel) and knowledge which is “emotionally sensed” (using one’s feelings as a constituent of knowledge). Dismissal of such knowledge is effectively saying “feelings don’t count”. Indeed, the structured interview and the group event are both likely to centre on these issues, so, like Enosh and Ben-Ari (2015 op.cit) the pitfalls of reflexivity and ethics can be inverted and used as a tool for adding quality and informing practice.
Another element of reflexivity which is exceptionally relevant in this case is that of translocational positionality:
“This approach aims to pay attention to spatial and contextual dimensions. It emphasises processes (rather than fixing people and ‘groupings’ of people). Difference and inequality are conceptualised as a set of processes, and not as possessive characteristics of individuals, although individuals experience the outcomes of these processes.”
This is extremely helpful in examining my own position of power. The fact that I am autistic like the group I intend to work with would be a gross over simplification and a devaluing of the subjects’experience. I am of course no less or more autistic than any other person on the spectrum (contrary to popular misconception, there is no “mild” autism) but I am, first of all the researcher. I also hold an elevated position by being university educated (three times over and counting) and, unlike eighty five per cent of my fellow autistic adults in the United Kingdom, in work- and earning comfortably in excess of the average income. On the other hand I have raised two autistic children (and two others), have been a single parent three times over, excluded from school, been street homeless, domestic abuse victim, psychiatric inpatient and faced other negative situations which would not (in my opinion) have occurred if I was neurotypical. While I have been lucky to be able to overcome these situations, I need to be mindful that the people with whom I am collaborating may still be facing many of these struggles.
The final main section is a critical exploration and synthesis of the present research position in the field of autism advocacy, such as it is. Murray (2012) provides a helpful historical overview, explaining the origins of autism organisations in the nineteen sixties, entirely parent-led, which successfully built institutional recognition and understanding of the condition, and subsequently achieved differentiation from the concept of ‘mental handicap’ and into the next decades a recognition of adult autism. With awareness established (albeit within relatively narrow communities of professionals and parents) issues of acceptance and the locus of power were challenged from the late nineteen eighties and nineteen nineties decade by people with the condition, resentful and angry of the concentration of resources and decision making on those very same communities of parents and professionals and the continued focus on the “pain and loss” medical view of the condition as explained earlier. This enmity continues and has given rise to the neurodiversity movement, modelling itself on similar lines to the civil rights movement, feminism and gay rights. The research on advocacy is minimal and frustrating, mostly descriptive or historical, with nothing on the library searches I have undertaken which provides an evaluation of the effectiveness of any advocacy services or models of advocacy. Itkonen and Ream (2013 op.cit) provide an example, dwelling as they do on Autism Speaks, the largest advocacy organization in the world. Their founder is quoted as autism having metaphorically abducted his grandson and pursues the most vigorous “pain-loss” model, referring to the condition as a national health epidemic. Their own accounts (Autism Speaks 2014) confirm that less than four per cent of their income is spent on support services, while over fifteen per cent goes on ‘cure science’ research and some forty four per cent is lavished on advertising and publicity. While the researchers point out that advocacy by litigation, which is at the heart of this model, tends to favour well-resourced parents over those who struggle to find the funds for lawyers, their urge for more research is how to build information networks and more effective lobbying. There is no challenge to the basic assumptions of current advocacy and significantly it refers exclusively to children. Morrow (2013) is another example of this stagnation wherein a new advocacy service is merely described, whose priorities are: “supporting basic, clinical and behavioral research across disciplines and institutions, creating a research infrastructure, including a statewide web-based research registry, improving and expanding diagnostic and treatment methods and informing state and federal policymakers about autism spectrum disorders.” There is no discussion of either the effectiveness or the desirability of these treatments which they hope to improve and expand or which policies they wish to promote and still no undertaking to look into inclusive services for education or employment. Tincani (2007) proposes a step beyond the pain-loss approach, which he designates the ‘Consumer Advocacy Model’, in suggesting a more rigorous and person-centred ‘contextual fit’ model. The weaknesses here are that his objections are technical rather than epistemological, ontological or ethical; the discourse is much the same; and, once again, it refers exclusively to children and the control of advocacy remains firmly with parents and professionals. The research suggests a clear pyramid of power in autism advocacy: at the top there are political and legal gatekeepers deciding on priorities and distributing resources with the second layer of professionals working within the limits imposed by that top stratum. Then there are the parents mediating with the professionals and in the fourth and penultimate stratum there are the autistic children. Firmly at the bottom are the autistic adults who effectively disappear upon maturity. There are scattered examples of the empowerment-driven neurodiversity model in mainstream research, such as Waltz et al (2015) who describe this growing movement, borrowing as it does from mental health survivor groups; it is still descriptive however and we are still looking for an examination of specific outcomes and the lived experience of advocacy from autistic people. Ne’eman (2010) also provides a similar account, albeit more polemical. He explains that:
“The object of autism advocacy should not be a world without autistic people — it should be a world in which autistic people can enjoy the same rights, opportunities and quality of life as any of our neurotypical peers. These words, counterintuitive though they may be to many in the autism community, represent the future that we must guide ourselves toward.”
The vast majority of voices from this neurodiversity model are not in the formal research community however. They are either from within the ranks of journalism (Silberman 2015) or in political activity or the world of blog writing and social media. This proposed doctoral research aims to introduce the neurodiverse paradigm and test it in the context of the lived autistic experience and challenge established practice in the process. To this end I will publish each section (as I have with my work so far) in my own blog (See Appendix B) and publicise it in the various autism social media groups of which I am a member, inviting comments and critique. This will be a formal part of the research process and all comments will be considered for inclusion and the people making them will be acknowledged. The proposal and subsequent progress will be offered for scrutiny to emerging advocacy groups for comments and input and, while I will not be in a position to reward participants financially for their assistance, I will be morally bound to offer time and service in return, drawing on my quarter of a century working in health and social care. I am keen to take advice on making the research accessible to visually or intellectually impaired people. This is not merely a tokenistic exercise, nor is it just part of a lexical argument. Excluding autistic people from the front and center of their own lives has real and at times shocking consequences. ‘Therapies’ such as ABA (Applied Behavioural Analysis) and TEACCH (Treatment and Education of Autistic and Communication-Handicapped Children) thrive in schools and clinics and they have evidence for their efficacy- but it is their basic objective which has not been challenged. They aim for the eradication of symptoms; to make an autistic person, in the words of ABA rhetoric, “indistinguishable from their peers”. This deeply objectionable ambition would not be tolerated were it to be applied to, say, gay or lesbian school students or any other minority group. Elsewhere there is “packing therapy”, chelation and other quack treatments, as well as the catastrophic damage done by the anti-vaccine movement, even after its leader was exposed as a fraud and stripped of his legal authority to practice medicine. Another aspect of this problem is the de-prioritising of the subject within the social science community. Eyal et al (2014) proposes that autism presently inhabits an “epistemic mirk”. They suggest that social scientists of medicine, psychiatry or disability are focusing on ‘cutting edge’, whereas autism is often observed by family or paraprofessionally and diagnosed by voyeuristic authority (there is no blood test or any form of quantitative measure). In this respect it is similar status to other developmental conditions, addictions or eating disorders.
By way of conclusion, we can see that this proposal sets itself an ambitious target, the establishment of a new paradigm which exists but is waiting to emerge. At the root is the discourse; the language we use and behind our very understanding of truth and reality. Dumont (1998) offers a summary of Foucault which is pertinent to the proposal:
“Foucault urges scrutiny and interrogation of analytical productions that profess “Truth.” This is not to say that he wishes to contest the accuracy of such claims; he has no interest in the pursuit of truth for truth’s sake. As he has written, “… it’s not a matter of a battle ‘on behalf’ of the truth, but of a battle about the status of truth and the economic and political role it plays” (Foucault, 1972: 132). For Foucault, claiming to speak for the truth nearly always amounts to an attempt to appear innocuous in the securing of power for oneself, to institute a “regime of truth” (Foucault, 1972: 133). Religious minorities, political minorities, ethnic and cultural minorities, women, homosexuals, and whole societies who lacked the will to conquer and convert others have been analyzed, defined, and subjugated by those who claimed that their actions were on behalf of truth. For Foucault, truth is dangerous. Its history is one of underwriting pain, suffering, and horror.”
Research in health and social care is an exploration into the future of some of our most vulnerable and special fellow humans. It is in many ways an investment in the future of the human soul. As those researchers we have the privilege of safeguarding that future; if we do not seek to challenge and change practice we need to examine our own motivations. This area is ripe for radical change; the proposed doctoral research is guided for the most part by a need to alter the paradigm of autism, achieved by changing the entire discourse and those who control it. Leadership of research in the setting has been weakened by the reluctance of researchers to engage in the subject beyond a model long abandoned in other areas and the consequences have been dire for the majority of people within this group, with inappropriate therapies for the young and social and economic marginalization for those in maturity. Mainstream advocacy, as exemplified by Autism Speaks, serves to exacerbate and prolong these deleterious processes and a growing alternative movement is gathering momentum. Mertens et al (2011) describes this tension:
“There is bound to be increasing tension between these two groups. One is extremely powerful with high profile celebrities fronting, while behind the scenes powerful interests fund their efforts. What the other lacks in resources, it makes up with passion, global internet networks and the righteousness of and justice of their cause. In the meantime….is calling for quality-of- life type research to be done with them as part of the struggle for inclusion….this means that over the next decade some hard decisions will have to made over what kind of research is done and which is funded. Will it be scientific research into the genetics of autism or even interventions which lack any scientific base in search of a ‘cure’? Or will it be transformative research done with networks….seeking their expertise on research proposals and mentoring?”
Until then the theory is sparse, disempowering and archaic; it requires new methods of enquiry with autistic people at its centre. Wing and Gould’s (op.cit 1979) “Triad of Impairments” have been allowed to become self-fulfilling prophecies but with a new paradigm we can focus on acceptance, inclusion and accommodation; a ‘triad of empowerment’.
Anthias, F. (2011) Intersections and Translocations: new paradigms for thinking about cultural diversity and social identities European Educational Research, 10 (2): 204-217
Autism Speaks (2014) Audited Financial Accounts retrieved from https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf
Brochhausen, M. (2006) Don’t Panic! It’s the Tractatus Logico-Philosophicus retrieved from https://philosophynow.org/issues/58/Dont_Panic_Its_the_Tractatus_Logico-Philosophicus
Bruce, T. (2010) Ethical Explorations: A Tale of Preparing a Conference Paper, Qualitative Inquiry 16 (3): 200-205
Centre for Disease Control and Prevention (2016) Autism Spectrum Disorder. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html
Dashper, K. (2015) Revise, resubmit and reveal? An autoethnographer’s story of facing the challenges of revealing the self through publication, Current Sociology 63 (4): 511–527
Dumont, C. (1998) The analytical and political utility of poststructuralism: considering affirmative action Canadian Journal of Sociology, 23 (2/3): 17
*elke, e., Carpenter, L (2015) Vulnerability and Emotions in Research: Risks, Dilemmas, and Doubts, Qualitative Inquiry, 21 (8): 741-750 (Please note the use of lower case letters for the co-author’s initials is as used throughout out the article.)
Enosh, G., Ben-Ari, A. (2016) The Creation of Liminal Spaces—Researchers, Participants, and Research Encounters, Qualitative Health Research 26 (4): 578-584
Farell, L., Bourgeois-Law, G., Regehr, G., Ajjawi, R. (2015) Autoethnography: introducing ‘I’ into medical education research Medical Education, 49 (10): 974-982
Gil, E., Fitzgerald, D., Gillis-Buck, Eva., Hart, B., Lappé, M., Navon, D., Richardson, S. (2014), New modes of understanding and acting on human difference in autism research, advocacy and care: Introduction to a Special Issue of BioSocieties BioSocieties, 9 (3): 233-240
Granger, C. (2011) Silent moments in education : an autoethnography of learning, teaching, and learning to teach University of Toronto Press, Toronto Part 1:1
Itkonen, T., Ream, R. (2013) Autism Advocacy: A Network Striving For Equity. Peabody Journal of Education. 88 (1): 48-59
Jensen-Hart, S., Williams, D. (2010) Blending Voices: Autoethnography as a Vehicle for Critical Reflection in Social Work Journal of Teaching in Social Work, 30 (4): 450-467
Lund Research (2012) Purposive sampling. Retrieved from http://dissertation.laerd.com/purposive-sampling.php#maximum-variation-sampling
Mertens, D., Sullivan, M., Stace, H. (2011) Disability Communities, Transformative Research for Social Justice in The SAGE Handbook of Qualitative Research SAGE London, 230
Morrow, E., Autism Experts Form Research and Advocacy Consortium Rhode Island Medical Journal 96 (8): 34
Murray, S. (2012) Autism Taylor and Francis New York, Ch10
Ne’eman, A. (2010) The Future (and the Past) of Autism Advocacy, Or Why the ASA’s Magazine, The Advocate, Wouldn’t Publish This Piece, Disability Studies, 30 (1) Retrieved from http://dsq-sds.org/article/view/1059
Office of the Public Guardian (2007) Making Decisions, The Independent Mental Capacity Advocate (IMCA) service. Retrieved from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/365629/making-decisions-opg606-1207.pdf
Ponterotto, J. (2006) Brief Note on the Origins, Evolution, and Meaning of the Qualitative Research Concept “Thick Description”, The Qualitative Report 11 (3): 538-549
Shaping Autism Research (2016) Reflections on the Cardiff Public Services Seminar. Retrieved from http://www.shapingautismresearch.co.uk/post/141912753380/reflections-on-the-public-services-seminar linked to: https://drive.google.com/file/d/0B83m4GMhHY23TENPSlc2ME9RYVU/view http://www.alexlowery.co.uk/routes-to-autistic-homelessness-and-routes-away/
Tincani, M. (2007) Beyond Consumer Advocacy: Autism Spectrum Disorders, Effective Instruction, and Public Schools, Intervention in School and Clinic 43 (1): 47-51
Townson, L., Macauley, S., Harkness, E., Docherty, A., Dias, J., Eardley, M., Chapman, R. (2007) Research project on advocacy and autism. Disability & Society. 22 (5): 523-536
Wall, S. (2006). An autoethnography on learning about autoethnography. International Journal of Qualitative Methods, 5 (2), Article 9. Retrieved from http://www.ualberta.ca/~iiqm/backissues/5_2/html/wall.htm
Waltz, M., van den Bosch, K., Ebben, H., van Hal, L., Schippers, A. (2015) Autism self-advocacy in the Netherlands: past, present and future, Disability & Society 30 (8): 1174-1191
Williams, J., Jauhari, M. (2016) Rude Boy Subculture, Critical Pedagogy, and the Collaborative Construction of an Analytic and Evocative Autoethnography Journal of Contemporary Ethnography 2016, 45 (1) 34–59
Wing, L. & Gould, J. (1979), “Severe Impairments of Social Interaction and Associated Abnormalities in Children: Epidemiology and Classification”, Journal of Autism and Developmental Disorders, 9 (1) 11–29
Appendix A https://www.facebook.com/Bananas-In-The-Pianos-1667609000174703/?fref=nf
Appendix B https://crawlingoutofmybox.com/
Nudibranch Of The Blog
The Magnificent Chromodoris! Not my adjective, that is its name and very apt, about 6 cm long in maturity. Nudibranchs can be found in most temperatures but this is one of the warm water varieties. To be found between the Indo-Chinese peninsula and Australia, unmistakable with its orange mantle and blue and white stripes.
Speaking of magnificent……..
Hamlet (or to be exact, Kenneth Branagh’s Hamlet. Which is part of the problem, but more of that later)
Which of Kate’s films is the longest? Most would presume it is also her best known: Titanic. Heaven knows that one takes a while to see itself out but no: at 8 minutes short of 4 hours, Ken’s Hamlet makes Cameron’s maritime disaster epic play like a pre-feature short!
Katers will be familiar with the story of her casting in the relatively brief but pivotal role of Ophelia. She had already delivered a Bafta/SAG winning and Oscar nomination-worthy performance in her role-defining performance as Marrianne Dashwood in Sense and Sensibility, whose lead performer and screen writer was Emma Thompson, formerly married to Branagh. (The British media referred to them as “Ken and Em”). When he adapted the Frankenstein story, Kate was suggested for the maid’s role. Branagh decided Julia Roberts was more suitable but Kate was promised the Ophelia part in his next intended project, Hamlet, without audition. Smart move. Katers will also know that, on the day of her big scene, she received the news that she had secured the role of Rose DeWitt Bukater/Dawson in Titanic, which makes that extraordinary scene even more fascinating to watch.
I am not going to take on the massed ranks of Shakespearian scholars by dissecting the story. Shakespeare is by general agreement the most significant figure in the entire body of English Literature; one of the most important and respected practitioners of the arts in mankind’s history. Hamlet is widely regarded as his most important work. Its influence on our language and literary culture exceeds perhaps any other single piece of work. Dozens of phrases in common use were first used in Hamlet. The story is a common trope: Star Wars? Hamlet. The Lion King? Hamlet.
So, for the film itself I should say that I enjoy (note present tense) it a great deal and not just because of Kate’s involvement. For a start, it is close to a faithful word-for-word performance of the play. William Shakespeare is effectively the original screenwriter, (though Branagh scored himself a credit and an Oscar nomination for it). The respect and love for the work- and the passionate wish to do it justice, by Branagh and his acolytes, beams from the screen throughout. At the risk of sounding perverse, perhaps too much. I shall explain.
I have the special Region 2, 2-disc version from (I think) 2006. Before we get the see the actual film, we are treated to a special introduction from Ken (tipping the experience beyond the 4 hour mark.) I can’t say I was thrilled to watch this. Thanks Ken but I will just watch it and draw my own conclusions. If I want to sign up for ‘A’ level English Lit I will. We get to have Ken explain what we are going to see, why it is so important to him and why the entire project is such a landmark. In his ‘sleeves-rolled-up, I’m a jobbing actor who got lucky, when are we playing footie later on?’ manner, which served to annoy many at the time, he explained that he gave ‘pep talks’to the cast and crew, letting them know that their efforts are bound for posterity, generations to come will talk about this etc. This was his Citizen Kane, his Apocalypse Now, his Birth Of A Nation, his Plan 9 From Outer Space or whatever.
Well, we are 20 years down the line and, well……it isn’t. Reviews at the time were deservedly praiseworthy. It snagged 4 Oscar nominations and a decent list of honours at the time- but do we see Kenneth Branagh’s Hamlet on the ‘All-Time Greatest Films’ lists now?
So, there is some hubris. Enough Branagh-bashing. It is not like I don’t like or respect him. He is a huge talent and by all accounts a very good person. His knighthood is richly deserved and he has a body of work, including Hamlet, with which he has every right to be proud. His Hamlet may not have achieved what he hoped but it is still a superb achievement. The cinematography, set design and costumes are a feast for the eyes, his eponymous performance is a triumph and the ensemble casting was bold and for the most part a great success. There are classical acting bankers: Derek Jacobi, Judy Dench and Julie Christie are unlikely to let you down and neither are the cast of less publically-known stage and TV actors but also seeing Charlton Heston, Timothy Spall, Jack Lemmon, Gerard Depardieu, sitcom legend Richard Briers and renowned British stand up comedian Ken Dodd (yes, Ken Dodd!) in the same film is something of a joy. Apart from you-know-who, my favourite performance is Billy Crystal’s Gravedigger cameo. Superb. Also look out for Rufus Sewell as the invading Norwegian ruler Fortinbras. Kate and he had a brief ‘fling’. You can see him with Kate later in The Holiday as her former boyfriend.
Ok, Kate. Ophelia is a young Danish aristocrat, Hamlet’s spurned lover and daughter of Polonius, a kind of Attorney-General to the Danish royal family. No spoilers but I will say things do not end well for her. It is a role of quite frightening emotional intensity; a portrayal of a mental collapse as complete as it is rapid, born of rejection and bereavement, not helped by her inhumane treatment. There are traps: to play her like a brooding adolescent (Ophelia is still used as an example of troubled young women in modern psychology) or as a cartoon crazy person. Kate’s strategy seems to be to infantilise Ophelia; a child-like state as her life and mind unravel, as she is used as a vessel for the frankly sociopathic machinations of the Danish royal court- itself an unravellling institution doomed for destruction. It is a strategy which is entirely convincing. Kate has said that Branagh helped her overcome her fear of Shakespeare (and perhaps by extension high-end literary roles) and we should be thankful to Branagh for his role in Kate’s evolution. Her reputation was already secure despite her youth but as she always says, you need to keep developing and testing yourself. Next up was Titanic and the the addition of global stardom to critical acclaim.
A must-watch. But book a day off!!