Page 12 - Community Living Magazine 35-2

research

Putting research right one’s deep and intimate knowledge of
this child, a knowledge that is, however,
curtailed by one’s limitations in training
and expertise.”

Studies often assume that a person with a learning disability is a Researchers, funders and ethics
tragedy and unable to take part in studies. Where is the committees add to impressive and
happiness, and how can we improve research? asks Sara Ryan sometimes worthless knowledge.
I remember an intensely earnest and
well-meaning postgraduate student sitting
in our living room asking a set of deficit-
was thinking about this article a few Wellcome Sanger Institute – may lead to laden questions about our son, Connor,
months before an exemplary “What is lighter consideration of applications. 20-odd years ago.
wr
I ong with research?” news story was While we cannot know if this was the Each question made me feel my skin
splashed across national channels in case here, freedom of information was being carefully sliced with a scalpel
August this year. requests reveal inconsistencies in the and yet I answered them. I was on the
It concerned Spectrum 10K, a project to committee’s considerations (O’Dell, 2021). medical model page – in part because of
investigate “genetic and environmental the deficit-laden research evidence base
factors that contribute to autism and Centred on deficit – and could not see beyond trying to
related physical and mental health A further problem with research is the use squidge Connor into a mainstream space
conditions to better understand wellbeing of poorly framed questions, aims and he would never (brilliantly) fit.
in autistic people and their families”. objectives, which arise from incomplete Research that takes a deficit-focused
The Wellcome Trust-funded project was understandings of the research topic. approach erases consideration of the joy,
paused in September by its lead, Simon Learning disability and autism research, love, fun and brilliance that characterises
Baron Cohen, after concerns were raised including the Spectrum 10k project, is much of family life. In turn, the research
by autistic people, their families and allies. replete with examples of this. findings replicate and add to a bleak and
These included fuzziness around what it partial evidence base.
was trying to achieve, and a lack of detail When I was writing Love, Learning
about the use and the storage and sharing Autistic people want research Disabilities and Pockets of Brilliance, I was
of collected DNA samples. that will make a difference in struck by the deficit focus in research
There were also fears the project may around siblings of autistic children. Google
incorporate eugenic thinking given the life but funding is focused on Scholar threw up pages of studies about
longstanding interests of investigators and science, with animal research the negative impact of having an autistic
the lack of involvement of autistic people sister or brother.
in its design. accounting for 44% of it Pavlopoulou et al (2019) took a more
The Health Research Authority is enlightened approach, arguing it was not
looking into the issues raised and the helpful to focus on a binary of positive
project team have commissioned a Despite the influence of a social model and negative outcomes in terms of
stakeholder engagement company to of disability, which sees the difficulties siblings’ wellbeing.
conduct a retrospective co-design. people experience as an outcomes of We need to approach our research
external factors such as physical obstacles, within different frameworks that allow
Varied ethical stringency prejudices and assumptions, research is engagement with the interests and joys
That such a project gained approval from too often underpinned by a pathologising, children shared.
ethics committees in England and medical model that emphasises deficit, The Pavlopoulou study found siblings
Scotland highlights how subjective and burden and cure. were resourceful, empathetic, tolerant
variable committee responses can be. A review of studies about research and loving, and viewed their family tasks
As researchers, we are required to jump priorities (Roche et al, 2021) found as “helping out” rather than negatively
through stringent hoops to get the members of the autistic community want framing them as “caring responsibilities”.
necessary signing off to begin our work. research that will make a difference in This underlines how important it is that
This includes providing micro detail to their everyday lives. research design, framing and focus are
satisfy committee members that requests In practice, autism funding is focused on not set up to reinforce stereotypes,
of potential participants are appropriate, basic science with animal research preconceived ideas and deficit models.
that we will act in a responsible and accounting for 44% of the total UK autism A final layer to this brief exploration of
respectful manner, and that data will be research funding in 2016 (Autistica, 2017). the wrongness of research is exclusion, in
anonymised and securely stored for a American philosopher Eva Kittay (1999: the form of being excluded at the
specified length of time with potential 169) wrote about how parents of disabled beginning, middle or end of studies. I will
data sharing clearly stated. children and professionals had different begin with a personal example.
Ethics committee members are, of types of knowledge: When Connor was around four years
course, people with their own old, he was enrolled in a university sleep
assumptions, thoughts, experiences, “There are, on the one hand, the study. This involved wearing a monitor to
biases and viewpoints. imposing (often impressive and record his night-time sleep patterns for
Prestigious project partners – sometimes worthless) professional a week.
Spectrum 10k involves the universities of knowledges that are being applied to We were asked to repeat the week
Cambridge and California and the your child. On the other hand, there is as the monitor showed a level of

12 Vol 35 No 2 | Winter 2022 Community Living www.cl-initiatives.co.uk