Volume 1. No. 2 |
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July 30, 2014 |
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Abstract: Review of a seminar day at the Institute of Education |
Theorising
Autism Project - Engaging Autistic People in the Research Process
By Anat
Greenstein
The Theorising
Autism Project (TAP) is a unique project that runs one-day seminars in
universities, bringing autistic presenters and academics together to discuss
how autism, and, more crucially, autistic people, are theorised and represented
in research. The second event of TAP took place on the 21st of
March, 2014. This was a one-day seminar under the title Engaging Autistic
People in the Research Process. The day was hosted by CRAE (Centre for
Research in Autism and Education) in relation to their report A Future Made Together Shaping
autism research in the UK .
The day started with a
presentation from Liz Pellicano of CRAE, who
presented some of the findings that arose from that project. These revealed the
great dissatisfaction by what she called the autism community with the
research produced in the UK. Autistic adults, family members and practitioners
stressed the need for research that explores areas that affect the day-to-day
lives of autistic people and their families, such as public services, life
skills and opportunities, and, crucially, research that addresses the place of
autistic people in society. Yet, the majority of research funding goes to
projects exploring biological and genetic aspects of autism, with very little
spent on research of societal and life-long issues (Pellicano
et. al, 2013). Thus, at the same time of Government attacks on disabled
peoples life chances, through such measures as the closure of the Independent
Living Fund, the cut to Disabled Students Allowance, as well as more general
welfare reforms and cuts, millions of pounds are spent on research that is
divorced from the interests and concerns of autistic people and their families,
and which very often promotes the idea that autism should be eradicated.
Against this bleak picture, the TAP seminar day was a much needed and inspiring
alternative.
Following Pellicanos illuminating report, Dinah Murray and Lyte, two
neurodivergent activists, gave powerful presentations
that spoke back to the ways autism is being theorised, researched and
represented in academia and in mainstream culture. Murrays presentation, Theorising
Human, drew on philosophy and art to ask what is distinctly human, and
explore how autistic existence is not a limited or deficient form of human existence,
as it is often represented in academic research, but indeed has a valued role
to play in the human spectrum. She looked at how autistic obsessions, the detailed fascination with
specific subject areas many autistic people experience, and which are often
described by researchers and practitioners as pathological, are indeed
expression of the uniquely human characteristic of multiplication - the
creation of much from little, the mass production and mass destruction that are
such an essential part of our societies. I must admit that I struggled at times
to follow the verbal, logical argument, but the pictures of autistic art that
so beautifully conveyed the wealth of nuances and complexities involved in what
might appear as repetition, were mind-blowing. And indeed, this form of
non-linear, non-rational, divergent experience was what, I believe, Murray was
calling us to value. In a presentation titled Under the Gaze: fishbowling, commodification and lenses, Lyte utilised
the discourse of the Gaze in art, poetry and painting, to address the power
relations involved in research production. The presentation rejected the
scientific gaze that is often used to represent autism as pathology, and used Lytes own point of view to look back and talk back at neurotypical society. In a society so fraught with
injustice, intolerance and violence, we do not need to think about how to fit
more people into current social norms, but rather we need to challenge the
concept of norms all together, since, as Lyte stressed when reading this
review, the healthiness of current neurotypical
society itself is much to be questioned.
Such theorisations by
autistic activists and by autistic academics have been proliferating over the
last decade(s), with this journal being one notable example. Yet, they often
happen outside of academia or at its margins. This seminar day put autistic
speakers at the centre of the stage, discussing their theoretical and research
agendas inside a major London university, with nonautistic researchers in the
role of audience. Ironically, the conference was located at The Space
a research lab with CCTV cameras, and one-sided mirrors, hiding spectators
galleries behind them. Moreover, the doors of The Space are operated by
electronic swipe-card, so workshop participants had to ask academic gatekeepers
(literally!) to let them in or out. This was a vivid example of the issues
raised at the conference. The very physical space of academia embodies the fishbowling research ideology that Lyte was talking about,
with expansive and sophisticated labs that place the objects of the gaze in a
tightly contained environment, exposed to the overarching, panoptic gaze of the
researcher (Foucault, 1979). This structure prevents dialogue between research
participants and the researcher, and constructs scientific knowledge as
objective and neutral, and dependent on highly specialised training and
equipment. These issues were raised in the concluding workshop of the day as
some of the barriers to shaping autism research together. I will return to
these points later.
The next part of the
day was dedicated to more participatory workshops that allowed for dialogue
between autistic and non-autistic, academic and non-academic, participants. It
is worth stressing here that the titles autistic and academic do not refer
to neatly defined and mutually exclusive groups. Some participants were
autistic academics, some were non-autistic academics, some were non-academic
and non-autistic, etc. Moreover, challenging the boundaries between academic
theorising and activist theorising was a major achievement of the day. This
challenge of the boundaries was double-edged first, the demand that autistic
peoples needs, interests and understanding will be at the centre of autism
research, and second, the use of sociological and philosophical theory by
autistic people to turn personal troubles into public issues (Mills, 1959) and
create social critique from an autistic perspective.
This last point was at
the heart of Damian Miltons workshop Using our Sociological Imaginations
to Theorise Autism. Milton explored briefly the main arguments of four
sociological theories (Functionalism, Marxism, Interpretive Sociology and
Post-modernism) and divided the audience into four groups, providing each with
information sheets about one theory and some snippets from his own life. We
were asked to construct a Damian according to the sociological perspective
given to us. This workshop was highly loaded with information, and it was
impossible to take everything in. Nevertheless, the group discussions and
materials provided allowed participants to start grappling with the ways social
theories are used to construct different representations of lived reality. Susy
Ridout, in her workshop Engaging Methods: Actively Constructing Alternatives,
demonstrated how collage work, using cut-outs from papers and magazines, can
facilitate discussions that draw on visual understandings and enable different
forms of conversation. In the group work participants created collages of what
they thought of autism research, which they later shared with the larger
group. The use of the collage technique
fostered a non-threatening environment in which to discuss issues of research
production in ways that did not immediately accord power to the academics who
are versed in methodological theories. Put together, the two workshops posed a
challenge to the traditional methods of academic discussion and research
production. They fostered horizontal dialogue as opposed to the hierarchical
relations between 'observer' and 'observed' that are embodied in the laboratory
model. Further, autistic participants were not seen only as experts by
experience who are invited as individuals to give heartfelt testimonials about
their lives (what Jim Sinclair calls 'self-narrating zoo exhibits'), or as
service users who are asked to provide their experiences to researchers, who
then interpret them in their own way. Rather, the workshops were a process of
co-constructing knowledge, with autistic people and academics theorising
together, transforming personal experiences into social critique,
particularly with regards to the disabling nature of much academic research
production.
The concluding
workshop of the day was aimed at planning the next steps how to push forward
more autism research that is done in true partnership with autistic people. One
of the main issues such research should focus on according to research
participation was quality of life and how to get this for autistic people. In
particular, there needs to be a focus on autistic led, critical investigations
of what counts as quality of life and who gets to define it. Developing such
research would require valuing (and developing) autistic expertise and
according them a meaningful place within research teams. This seminar day
certainly provided examples of the valued role of such partnerships. With
regards to resources such as time and money, the workshop fostered
opportunities for networking which participants were hoping could lead to the
development of research funding bids. Personally, I have found the day highly
inspiring and am keen to foster more research collaborations between autistic
researchers and activists and the autism research taking place at the
University of Manchester.
References
Foucault,
M. (1977). Discipline
and Punish: Birth of the Prison. London: Penguin Books.
Mills, C.W. (1959). The Sociological Imagination. Oxford: Oxford
University Press.
Pellicano, E., Dinsmore, A., & Charman,
T. (2013). A future made together: Shaping autism research in the UK.
London: Institute of Education.
Sinclair, Jim
<golem@ukanvm.bitnet> Re: Autobiographies <autism%94012300345553@sjuvm.stjohns.edu>
in Usenet newsgroup bit.listserv.autism, Sat, 22 Jan
1994 21:49:09 CST.
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