By Robin Michalon, associate researcher
In recent years calls have become louder to promote inclusivity at scientific conferences and within science more generally. One of the first areas in which this was observed is biomedical research. Inclusivity here intersected with the development of what has since been labelled citizen science. But what is inclusivity, precisely, how does it work and what does it do to conferences?
To explore how inclusivity is conceptualized, promoted and practised at conferences, I draw on my PhD research into one important conference series on Alzheimer’s disease, the Alzheimer’s Disease International Conference (ADI Conference).
In the 1990s, research on Alzheimer’s disease increasingly turned to prevention. This shifted the focus towards earlier stages of pathological development, significantly broadening the patient population. “Alongside advanced stage Alzheimer’s disease patients … recently recognized patients in the early and pre-clinical stages” were now taken into account (Donnovan et al., 2013).
Some of these newly labelled patients became activists, founding associations such as the internet-based collective Dementia Advocacy Support Network International (DASNI). Only a few months after the collective’s foundation, two DASNI representatives were invited to the 2001 ADI Conference.
That year, the conference thus featured its usual directory meetings, plenary lectures and wide array of workshops but also for the first time included people with dementia (PWiD) from DASNI as participants and speakers. Christine Bryden gave a plenary talk on “Diagnosis, Drugs and Determination” and Morris Friedell took part in a workshop on Early Stage Dementia. Ten others held a booth, distributed flyers, walked around, interacted with other attendees, gave media interviews, organized DASNI internal meetings and lobbied ADI to include PWiD in the organization’s directory.
ADI claimed to be obeying calls to be more “inclusive” of PWiD voices, following the example of national level meetings, especially in Canada and Australia. However, as sociologists have noted, inclusion remained an open-ended and complex process involving organizational, moral, and epistemic challenges (Donovan et al, 2013). ADI’s documentary productions and DASNI’s web archives supply rich materials to document the complex composition of a new conference form inclusive of PWiD.
The 2001 conference through ADI’s lense
Both DASNI and ADI remembered the 2001 Christchurch conference as a turning point in the history of PWiD integration in international conferences but the two organizations interpreted the event in different ways.
For ADI, PWiD presence at the conference signified moral and political progress through inclusion. The newsletter report on the meeting argued that
“Perhaps this is the essential experience of the conference. The voice of the person with dementia clearly emerged at this year’s conference and has been added to the voice of the family carer, the two together will send out an even louder message to policy makers worldwide of the need to tackle the impact of dementia in each country.” (ADI, 2001, p.8)
In this and other accounts, the federation described how it “offered a person with dementia the opportunity to share their experience with conference delegates” (ADI, 25 years of Alzheimer’s Disease International 1989-2004, “Involving people with Dementia and their carers,” 2008, p.28)
For ADI, among the different forms of PWiD involvement at the conference, Christine Bryden’s plenary talk was the most meaningful. ADI’s former chairman Orien Reid wrote that it had “fundamentally changed ADI, making it a world leader in involving people with dementia”(Ibid., p.33). Despite the importance and qualities attributed by ADI to Bryden’s lecture, it was often reduced to a testimony of her experience as a patient.
The 2001 conference through DASNI’s lense
DASNI remembered the conference quite differently. In its accounts, it is quite clear that PWiD were not simply “invited” to the conference. The network members’ primary goal was to fight the stigma of incompetence grounding their exclusion from the dementia movement:
“To date, people with dementia have been regarded as incompetent to serve in responsible capacities. This is implicit in their exclusion from active participation in the policy, program and advocacy work of bodies concerned with dementia or in the management and decision-making of such bodies.” (DASNI proposal to ADI, 2001, Visited on 20.01.2022)
Or in their a posteriori recollection of the event,
“Here were people with dementia showing in such an irrefutable way that not only does life continue after diagnosis but that people with dementia have much to offer within the Alzheimer’s organization.” (DASNI website, visited on 20.01.2022)
DASNI members also intended to reaffirm the core purpose of the conference and organization:
“Without us who have dementia there would be no Alzheimer’s Association and no World Conference. The officials and organizers would be quite rested and blissfully unaware of their potential to change lives and attitudes. For that was what this conference was all about and to everyone’s credit this potential is starting to be realized as well as being increased by the moment.” (DASNI website, visited 20.01.2022)
DASNI’s sources emphasize that its members came to the conference to push for changes. Christine Bryden’s speech was not only about “experience-sharing.” Although she told a biographical story “from diagnosis to death,” she used the “we” pronoun, encompassing other PWiD. She made epistemological and ontological claims:
There may well be gaps in our memory but that is not always the first sign we feel. It’s more like a kaleidoscope of small problems, of not quite being ourselves. We don’t do everything we used to do, it all seems so much trouble. It’s what you on the outside of our inside struggle might call apathy.” (DASNI website, visited on 20.01.2022)
Bryden was also fiercely critical of many aspects of care and treatment going far beyond her own experience, from the precision of diagnostic criteria and the pertinence of drug trials results to the inability of GPs to recognize dementia or to attempts at hiding diagnoses from patients.
DASNI’s actions during the conference were multiple. Members ran workshops and held a stand where they distributed brochures. They developed their own interactive style in informal conference settings by transforming common practices such as doorway conversations:
“I forgot to tell about Jan’s bubbles. She gave each of us a little bottle of gin…oops, bubbles to hang round our necks. When we felt particularly stressed we would open the bottle and blow bubbles over everyone. It made for much hilarity and the rank and file became even more convinced that we had lost the plot somewhere along the line. Funny thing was that they all wished that they had one too. […] It is a real PWiD’s joke.” (DASNI website, visited on 20.01.2022)
International conferences as spaces of negotiation
It was undeniably important for both ADI and DASNI that PWiD be given a role in the federation’s international conference, and later in the global dementia movement. But contrasting expectations and narratives reflected uncertainty about the nature of patients’ role and space in both. There was no blueprint for the integration or participation of PWiD in conferences. Instead, conferences were spaces where the competence and agency of PWiD were negotiated. PWiD pushed to gain more of both via dedicated plenary talks, workshops, and visual material such as flyers and the development of a specific interactive style.
This case shows that international conferences about Alzheimer’s Disease were important sites not only for including previously absent actors such as patients, but also for negotiating their role in the community and defining their identity as a group.