Page 22 - Community Living Magazine 35-3

research

Stories from yesterday resonate today and shared

decision-making makes research inclusive

Life stories from 19th century history and today plus approaches Finding ways to ensure the
to ensure people participate in research as equal team members co-researchers were involved required the
team to continuously reflect and break
are addressed in recent studies, reviewed by Juliet Diener down the process of the research task.
This challenged the research team’s
approach to scientific knowledge
reative responses to finding the One team was led by The Brain Charity and methods which in turn enriched
learning disabled person’s voice in Liverpool and the other by the Teaching the data gathered, allowing for
Cwithin and through research and Research Advisory Committee at the meaningful participation by those with
practices have been the focus of recent University of South Wales. intellectual disabilities.
articles in the British Journal of Learning Through information gleaned from In answering the various research
Disabilities. All articles are open access. the digital archives, the two teams sub-questions, the “team deemed the
revisited Grandoni’s life story and following as helpful: asking one another
A life in 19th century Milan creatively “rehumanised” her, “with questions, explaining, discussing the
Barden O, Walden SJ, Bird, N, Cairns S, participants recognising and appreciating scientific and the experiential knowledge
Currie R, Evans L, Jackson S, Oldnall E, Antonia as a person, as a woman, as together in easily understood language
Oldnall S, Price D, Robinson T, Tahir A, someone who could love and should and using visual supports”.
Wright C, Wright C. Antonia’s story: be loved”. These strategies were part of how the
bringing the past into the future. Through group discussions and graphic team engaged with the research where
17 February 2022.  https://doi. illustrations, Grandoni’s experience of every team member was equally valued
org/10.1111/bld.12447 disability was recorded, reflected and and had a role to play.
embodied through visuals and eventually
nclusive practice within academic the creation of a website to share her
research is expertly presented in this story and its impact. Co-researchers’ involvement
Ifascinating participatory research paper This project reminds us that accessibility is intertwined with power
presented by academics, learning disabled is possible and necessary in all stages
people and their advocates. of understanding the history of disability distribution in decision-
Connecting stories from the history of and that creative mediums aid making and it is important to
disability to the lived experience of collaborative thinking.
learning disabled people today, the More about this project and images find a balance in the team
research focuses on the life of a young can be found at www.thebraincharity.org.
woman named Antonia Grandoni, who uk/antonia.
lived in Milan from 1830 to 1872, mostly Adjustments were required and
within an institution as she had been Making research inclusive through timelines amended as the process needed
labelled an “idiot”. a staged, questioning approach more thought to make sure participation
Using Grandoni’s story as a reference to Vlot-van Anrooij K, Frankena TK, van der by the co-researchers was possible at
how learning-disabled people were Cruijsen A, Jansen H, Naaldenberg J, every stage. Simplifying language and
treated and experienced life, this project Bevelander KE. Shared decision making in using easy-read approaches were
aligned her experiences with people with inclusive research: reflections from an especially prevalent as strategies.
learning disabilities today, thereby inclusive research team. 7 February 2022. The four studies conducted over
“bringing the past into the future”  https://doi.org/10.1111/bld.12450 the three-year collaboration highlighted
through the voices of those alive now. that “co-researchers’ involvement is
This research leads the way in making nviting learning disabled people to intertwined with power distribution
sure learning disabled people are key become co-researchers is central to in decision-making and that it is
to writing the history that shapes Ithis study that invites the reader to important to find a balance in the
their experiences. follow the team in making research inclusive research team to make
It uses a methodology that considers practices inclusive. shared decisions”.
accessibility at every stage, enabling Using the method of shared decision- This study provides evidence that
research to be led not only by “doctors making, the team worked together to inclusive research is possible and that
and other people in the medical make the research process accessible people with intellectual disabilities have a
professions, like psychologists. This means at every stage – design, data gathering role to play, not only because of their
that people with learning disabilities have and analysis. lived experience but also as active
been excluded from learning disability Focusing on “healthy settings for members of a research team.
history research.” people with intellectual disabilities”, the This project evidences the stages of
Addressing this omission, this paper team worked on a three-year how this was made possible and the
presents a team approach where learning collaboration which required a staged shared decision-making process that
disabled people are the researchers. approach throughout. supported inclusive research practice.

22 Vol 35 No 3 | Spring 2022 Community Living www.cl-initiatives.co.uk