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research

of people in research whether as
participants or partners. This may
involve careful explanation of why we
need to support people to take part
rather than deny them the opportunity
● Acknowledge we have learned a lot
from past experiences of trying to
involve people in research and continue
to improve our knowledge, skills and
ways of engaging
● Recognise that research participation
can be beneficial and enjoyable, and the
potential for harm is low
● Be upfront and clear about the
additional resources needed to pay
people for their work and the time and
flexibility required for effective
engagement. This includes developing
and sustaining relationships with
Dino time: research often ignores the fun, love and brilliance that characterises much of family life third-sector organisations and people
that continue after the project ends.
wakefulness that suggested the device disabilities, erasing the variety of skills, Kittay (1999: 178) wrote “those who
was faulty. When the second week abilities and ways of communicating plow the fields of social justice know an
produced a similar pattern of wakefulness, ● Treating everyone as the same makes it oppression that has laid so heavy on the
Connor was excluded from the study easier to remove people who come shoulders of its victims that it has numbed
because his data could skew the findings. under this heading from research the response to the burden is the most
It is grimly fascinating to witness how ● It removes people’s right to participate unjust of all.”
apparently scientifically robust research in research and the enjoyment, pride or We all have a responsibility to act
can have its edges smoothed to avoid satisfaction that this may generate on these injustices. The effective and
unruly findings. ● It erases any consideration of swift response to Spectrum 10k by the
On wider scale, a review of projects (fluctuating) mental capacity and autistic community and allies is a
funded by the National Institute of Health discussion around consultee consent refreshing example of a refusal to be
Research (NIHR) was conducted to that could enable people to participate comfortably numb.
determine the inclusion of people with ● It weakens the evidence base as Doing research better is essential to
learning disabilities in its portfolio (Spaul research findings are less robust. achieving effective and meaningful change
et al, 2020). The last point has profound and redressing longstanding inequalities
It found that: 60.3% of the studies had consequences given the enduring health throughout life. This is a conversation we
“learning disability” as an exclusion inequalities and the rates of premature as a research community need to
criterion; none investigating pneumonia mortality for people with learning continue and embrace, as uncomfortable
or sepsis included people with learning disabilities and autism. as it can be. n
disabilities, even though they can be
susceptible to these conditions; and only Doing things better Sara Ryan is a professor of social care at
1.4% specifically related to people with How do we do things better and refuse to Manchester Metropolitan University and
learning disabilities. be comfortably numb? author of Justice for Laughing Boy: Connor
The authors suggested “a review of I am working on two NIHR-funded Sparrowhawk – a Death by Indifference.
ethical barriers and a more active projects involving people with learning
involvement of research funding disabilities and family carers: Flourishing O’Dell L (2021) Spectrum 10K: health official
organisations to scrutinise the justifications Lives; and Growing Older, Planning Ahead. slammed “messy” ethics application from
behind this exclusion might be warranted”. These projects are, through a controversial autism DNA study. https://tinyurl.
com/567dmnhv
This review revealed so much that is combination of bumpy and evolving Roche L, Adams D, Clark M (2021) Research
wrong it demands further unpacking. involvement, co-design and a strong and priorities of the autism community: a
Learning disability as a blank exclusion cheerful commitment by everyone systematic review of key stakeholder
criterion in research – what does this mean? involved, helping us to understand how to perspectives. Autism. 25(2):336-348
● It feeds into the consistent do research better. Autistica (2017) A review of the autism
research funding landscape in the United
homogenisation of people with learning A commitment to doing things differently Kingdom. https://tinyurl.com/he8dtnhc
has involved the research process itself Kittay E (1999) Love’s Labour: Essays on
affecting team members in diverse ways, Women, Equality and Dependency. New York
This removes people’s right to not least in the development of confidence. (NY): Routledge: 169
Pavlopoulou G, Dimitriou D. “I don’t live with
Some of the things we have learned
participate in research and during this work around how to do autism; I live with my sister”. Sisters’ accounts
the enjoyment, pride or research better include: on growing up with their preverbal autistic
siblings. Res Dev Disabil. 2019;88:1-15
Working with funders and ethics
Seán Kelly satisfaction this may generate ● committees so they know the Spaul S, Hudson R, Harvey C et al (2020)
Exclusion criterion: learning disability. Letter.
Lancet. https://tinyurl.com/3xcpkrcn
importance of meaningful involvement
www.cl-initiatives.co.uk Community Living Vol 35 No 2 | Winter 2022 13