Rights in Crisis: Lived Experience as Knowledge in Policy Development During the COVID-19 Pandemic

The role of DPOs

The lived experience of disabled people is central to the Convention’s call for DPOs’ participation in policymaking, as highlighted in the Committee on the Convention’s guidance (2018), which recognises knowledge claims of disabled people ‘because of their lived experience and knowledge of the rights to be implemented’ (CRPD Committee, General Comment No. 7 2018). Kumpuvuori and Virtanen (2017) argue that this effectively results in DPOs functioning as both interest and expert groups. On the one hand, DPOs claim legitimacy through their representation of disabled people’s interests and rights and, on the other, through their unique expertise, experience and understanding of the lives and needs of disabled people (Kumpuvuori & Virtanen 2017). In many respects, these dual functions are intertwined and fundamental to ensuring the centrality of disabled people themselves in accessing and implementing their rights.

In this context, it is important to note that the obligation on states parties to ensure the realisation of the right to participation in policymaking, includes a derivative obligation to support the capacity of DPOs to serve as effective contributors and collaborators in consultation processes (CRPD Committee, General Comment No. 7 2018). The Committee stresses that this includes ensuring funding and other necessary support to secure DPOs’ independence and ability to function as monitors of the Convention and to provide meaningful input. Particular attention is drawn to the need to ensure that this support takes note of and reflects the diversity of impairments and, thus, the diversity of disabled people’s organisations.

In Iceland, public funding for DPOs is limited. Funding for the largest DPO, and one of two DPOs that have legally protected consultation status, is secured through their ownership stake in the national lottery. The other DPO that has consultation status is partly funded through project-based government funding. The remaining DPOs are predominantly independently funded through the sale of various lotteries, merchandise and grants, with limited public funding.

Feminist standpoint theory

A second pillar of our theoretical perspective is feminist standpoint theory, which stems from the feminist struggle to cast light on and give name to inequities faced by women. Feminist standpoint theorists argue that marginalised lived experience can establish different ways of knowing, providing critical insights into the processes of oppression (Collins 1998; Harding 1993; Harding 2004; Smith 2005; Wylie 2003). Indeed, a main argument of feminist standpoint theory maintains that groups oppressed by unjust social systems have an epistemological advantage over privileged groups when it comes to understanding those systems. By virtue of their lived experience, marginalised groups have a capacity to know and understand things regarding oppressive dynamics and systems that privileged individuals do not know (or have a vested interest in ignoring or not knowing) (Wylie 2003). Therefore, placing the experiences of marginalised groups at the centre of research provides a fuller view of oppressive social structures and power relations and how they shape and condition people’s lives (Collins 2009; Harding 2004; Smith 2005). A recent term encapsulating the value arising from marginalised experience is Sara Ahmed’s (2012; 2021) ‘institutional plumbers’, describing marginalised individuals who, by coming up against institutional blockages and the inner workings that reproduce oppressive power relations, become experts in them. Ahmed’s (2012; 2021) writing about the various informal institutional mechanics experienced by marginalised individuals brings valuable analytical insight into how power dynamics are manifested through them, rendering institutional commitments to justice and diversity nonperformative.

Drawing on feminist standpoint theory has both methodological and analytical implications for this research project. As argued by Smith (2005), the inquiry starts at the margins, from the perspectives of disabled people, is grounded in their understanding and cognitive frameworks and probes critical issues raised by them. In line with feminist standpoint theory, our analysis focused on the power dynamics and institutional inertia that participants came up against in their advocacy work during the pandemic. Mindful of the importance of the social position individuals occupy and the power dynamics between researchers and participants, we, the authors, feel it is important to briefly note our position. We are both non-disabled, white, cis women and disability scholars. Throughout the project, we remained cognizant of the power relations inherent in it and committed to remaining true to the experiences of the participants in our research project.

Participants and procedures

Altogether, 15 representatives of established DPOs, grassroots and activist groups were recruited through purposeful sampling: nine women and six men. Participants worked for seven DPOs, which all serve as interest and expert groups (Kumpuvuori & Virtanen 2017), and all are based in the capital area of Iceland. Using the classification by Löve et. al. (2018), four of the DPOs were identified as established organisations and three as activist or grassroot organisations. The established organisations included two large umbrella organisations and two DPOs that have legally protected consultation status.

In total, 18 interviews were conducted from January 2021 to February 2023, nine by each author. Ten representatives of established DPOs were interviewed; six of them were disabled and four were non-disabled. The five representatives of activist organisations were all disabled. Three participants were interviewed twice to delve deeper into aspects that had emerged in prior interviews. The interviews were semi-structured, allowing flexibility for follow-up questions while staying within the framework of predetermined topics (Braun & Clarke 2013). The interviews began with general inquiries about the DPOs’ advocacy efforts and their experience with consultation processes before the pandemic. The main part of the interviews centred around the DPOs focus and advocacy work during the pandemic and their engagement with the institutions tasked with responding to the pandemic.

The duration of the interviews was about 60 minutes. Due to the pandemic, six interviews were conducted via Zoom, but others took place in a location of participants’ choice as restrictions had been lifted. All the interviews were conducted in Icelandic, recorded with participants’ consent and transcribed verbatim.

Data analysis

Reflexive thematic analysis (Braun & Clarke 2013) was employed by reason of its theoretical flexibility, making space for the centring of analytical aspects brought about by the theories guiding the research, namely the disability rights approach and feminist standpoint theory. Critical questions guiding the analysis focused on social structures and mechanisms encountered by participants, affecting successful consultation processes in the pandemic. Furthermore, whether and how the lived experiences of participants informed the advocacy work of DPOs and furthered disability issues during the pandemic. Initially, the first author coded and developed the themes. The authors collaborated on the further development and refining of themes. Direct quotations were translated into English by the first author.

Ethical considerations

Research holds ethical value in its scientific and social significance. It is the responsibility of researchers to ensure that their work is scientifically sound and generates valuable information (CIOMS 2016). As authors, we affirm that we have adhered to sound and ethical practices in the project design, analysis, and data interpretation. We believe that our work contributes to both scientific and practical knowledge on the subject matter. All participants were informed of the purpose of the study and participated willingly. In order to maintain the anonymity of the participants, we refrain from the use of pseudonyms and omit any identifiable background information in the analysis and published findings. The research proposal was reviewed by the Research Ethics Committee for Public Higher Education Institutions (SHV2021–009).

Lived experience as knowledge guiding DPO advocacy

Participants described realising as soon as news of the pandemic broke that it would most likely impact their people in manifold ways. Foreseeing, based on previous experience, that their interests would be neglected or deprioritised by authorities, DPOs quickly refocused their work to prioritise advocacy on behalf of their members, keeping in close contact with them through their organisational channels to learn about problems arising and often aiding individuals in precarious situations. Throughout the interviews, it became clear how their advocacy and work were informed by multifaceted experiential knowledge, ranging from an understanding of specific barriers that particular groups might face to detailed insight into how institutional habits of service systems might impede the uptake of disabled people’s concerns. Three separate knowledge bases informed the DPOs work and advocacy in important ways.

First, based on their lived experience of disability, the disabled DPO representatives had intricate knowledge of the needs, barriers and issues the group they represented faced in daily life. Furthermore, they were aware of how circumstances could affect diverse groups differently, for instance, how the shift to online teaching could disadvantage, in particular, children with intellectual disabilities.

Second, through their organisational channels, DPOs were in close contact with their members and had access to first-hand information about emerging issues and challenges. To maintain and facilitate this flow of information, DPOs made their consultation services available through remote technologies and organised special online and peer support forums. Through these mediums, DPOs gained information about issues that were meaningful and important to their grassroots and placed them at the forefront of their advocacy work, as one participant described:

This all comes from, all or most of it, from the grassroots, or our people. They ask questions, and we, while answering them, start thinking: Where are the answers?

Third, through their prior experience dealing with these systems and advocating for disability issues and rights, the disability representatives had a keen insight into the service systems, institutions and official entities that collaborated to respond to the pandemic. Like Ahmed’s institutional plumbers (2012; 2021), they knew the cracks and the gaps in the systems, as well as the informal institutional mechanisms that had so often deprioritised the disability issues they had been advocating for. This insight and understanding was evident in the way DPOs expressed their concerns when the pandemic started. Although concerned about the potential health repercussions of the virus for their members, the primary source of apprehension shared by the representatives was whether or how the basic rights and safety of disabled people would be impacted, potentially ignored or disregarded in the actions taken by officials. Through their long-time advocacy work, they had experienced the ways in which disability issues were often rendered ad hoc within the same institutions that were now tasked with reacting to the virus. Having repeatedly come up against such institutional tactics, they deduced the potential hurdles or threats to disabled people’s safety and rights. For example, being well acquainted with the fragmented nature of services, which are often tied to specific premises but not the individuals who use them, one representative envisaged that closing schools and workplaces could result in the loss of necessary support by many individuals. They explained:

Immediately when we realised where things were heading in the pandemic when they started to close nursing homes, and we saw that they were closing workplaces for disabled people, we wrote a letter urging authorities to be careful, and we emphasised that they had to ensure services provided on the grounds of law. Because although preschools, schools and workplaces were closed, the need for support didn’t disappear. The support had to follow individuals to their homes, whether children or adults.

As the DPO representative foresaw, this would become a serious problem for many disabled individuals, children and their families who did not receive their rightful support during the pandemic (Snæfríðar-og Gunnarsdóttir et al. 2023). Another participant described her apprehension when hearing of impending vaccination prioritisation. Being acquainted with the limited databases of institutions and the faulty understanding of officials, she anticipated hasty and streamlined outcomes that wouldn’t take the important physical and social issues of disabled people into consideration. She explained:

I just thought: On what grounds will they prioritise? Will they prioritise on the grounds of what services people use or on the grounds of medical records? And how safe is that, then? What about when a person has reduced lung capacity because of their impairment but they don’t have a disease? Will they recognize that? I, of course didn’t know, but then again, knowing how it usually goes for our group, we always end up on the margins.

Many of the issues that the DPOs foresaw potentially progressing into serious problems in the pandemic stemmed from the failure of institutions to work together in a cohesive manner. They had experienced how gaps in services between individual governmental institutions and municipalities had often served to complicate and thwart responses to disability issues. Accordingly, these unaligned service structures, coupled with the atmosphere of panic arising from the pandemic, created conditions where important issues could possibly, if not in all likelihood, fall between the cracks. One participant explained:

It was such a daunting realisation that even between different institutions of the state, like the health clinics and the Directorate of health, there wasn’t that much collaboration. And the panic kind of shone through.

Since disability issues had not been successfully integrated into the work and routines of various governmental institutions and organisations, it remained the task of DPOs to be vigilant and to advocate for important disability issues related to the pandemic or the measures taken to counter the spread of the virus. Indeed, a lack of collaboration and consultation during the pandemic often made it difficult for DPOs to get important messages across to, or to establish a dialogue with, the authorities.

Institutional mechanics impeding consultation

Overall, the DPO representatives considered consultation processes during the pandemic to have been limited and faulty. Institutions very seldom initiated contact with DPOs. When invited to collaborate or consult, it most often involved immediate problems, usually issues raised by the DPOs themselves, but not involving them in important decision-making processes or in planning focusing on pandemic-related issues with a broader scope, as called for by the CRPD committee (CRPD Committee, General Comment No. 7 2018). A number of participants described engaging in collaboration, which they perceived to be ‘tokenistic gestures’, where the methods of collaboration were restrictive, defined and delineated by the institutions. Sometimes this was done under the guise of information gathering, where DPOs were asked to partake in time-consuming efforts, such as regularly filling out long questionnaires or participating in meetings, without any assurance as to how or whether their views or the information they provided would be taken into consideration. To participants, these consultation processes were opaque and felt like a placation. As an example, one interviewer had attended a meeting that seemed to be primarily aimed at letting participants vent, allowing officials to claim that all sides had been considered and everyone had been heard:

We were called by the ministry. It was the kind of consultation that they used in order to be able to say they had been consulting us. But it was just ridiculous.[…] But it didn’t really matter what was said, it was just to tick some box: ‘We’ve listened to that and now we can start thinking about the issues that really matter’.

The method employed by the ministry to promote consultation, as described by the participant, had the apparent aim of not to collaborate but to appease DPOs and ‘tick a box’. Furthermore, as the quote shows, such tactics left participants with the understanding that disability issues were not those ‘that really matter’.

Although, at times, institutions’ responses indicated a recognition of the practicalities of the experiential knowledge of disabled people, the capacity of DPOs to act as expert groups, as defined by Kumpuvuori and Virtanen (2017), was undermined as their contribution was seemingly devalued and used selectively when aligning with the officials’ own priorities. This manifested in various ways. After being criticised by DPOs for overlooking large groups of disabled people in the material they disseminated, rendering it unusable for many users of disability services, the Department of Civil Protection and Emergency Management hired a non-disabled person to serve as a specialist in disability issues. An interviewee explained how ‘instead of us just being hired to do the job’, it was assumed that they, the DPO representatives, would participate in numerous meetings and volunteer advice to help this specialist who lacked knowledge on issues of importance to the group she was supposed to be working for:

It was just a little absurd that she, the non-disabled person who had little or no understanding of the topic, was the only one at the table on the payroll while we were there to feed her with facts and information and all the things that needed to be thought through, and we all were unpaid.

Overall, the DPOs that officials were obliged by law to consult with appeared to be involved to a greater degree than others. In particular, one such DPO stood out in the interviews, as its consultative experiences had been more fruitful than those of other DPOs. They characterised their collaboration with one specific municipality as having been successful:

In my opinion, [the municipality] did a very good job of always keeping in touch, looking for advice and including us. And we were often helping them solve problems, which was just self-evident, we were somehow all in this together.

As the interviewee explains, the municipality had kept the DPO updated regarding impending actions or changes in their services and consulted with them when tackling infections in assisted living residences. Municipality staff furthermore asked for and accepted immediate help and expertise from the DPO when reacting to infections and by reaching out to ‘and just calling me, often during evenings’, as one representative from the DPO explained. This DPO reported having cultivated a collaborative relationship with the municipality in question in previous years, with regular consultative meetings that seemingly facilitated a consultative relationship during the crisis. However, this specific DPO differed from others in meaningful ways. It is fronted mainly by non-disabled people and has, in their advocacy work, been particularly mindful of how they got their messages across, taking care not to be perceived as imposing or difficult to work with, as one interviewee explained: ‘It’s important to be solution-oriented. I think it’s a very effective way to make the system want to work with you’.

As the quote illustrates, the representative understood collaboration as being dependent on the willingness of the institutions. Despite authorities’ obligation to consult, it was seemingly understood as fleeting and that being regarded as negative could have potential ramifications for your cause.

As interviewees describe collaboration with authorities during the pandemic, it was rarely effectively meaningful as defined by Young (1990) or the committee on the Convention (CRPD Committee, General Comment No. 7 2018), and DPOs were kept out of important decision-making processes. Collaboration was mostly limited to solving immediate problems, and rarely were DPOs asked to take part in organised planning or decision-making processes that focused on issues with a broader scope, as called for by the CRPD committee (CRPD Committee, General Comment No. 7 2018). This also remained the case for DPOs, whom officials were obligated to consult with. Even DPOs with a collaborative history with authorities reported being left out of collaborative processes where important decisions were made. One participant explained how a DPO’s invitation to participate in a consultation team aimed at disaster risk planning and management had been rescinded as it was deemed too burdensome for the institution.

They established a response group in the ministry which we were told that we would be represented in. Then, when they started meeting, we were told we couldn’t participate because if we were allowed to, then everyone would have to be allowed to participate, and then the group would become too big.

Apparently, ‘practicalities’ outweighed the obligation to consult disabled people and the value of the knowledge the DPOs brought to the consultation.

‘We were our own civil defences’ – Skewed responsibility and invisible work

Recognising that important disability-related issues were being neglected in official discussions, disability representatives were cognizant of the importance of their advocacy. Several participants spoke of the invisible work rendered by this, as DPOs found themselves shouldering responsibility for disability-related issues. Due to their experience and insight into institutional mechanics and habits, like Ahmed’s (2012; 2021) institutional plumbers, they were often one step ahead of officials regarding important issues, as examples in the previous chapters show. When describing the work of DPOs in the first months, one participant used the analogy of emergency workers trying to contain the potential damage: ‘We were a lot like firefighters, trying to distribute information, suggestions and instructions’.

Participants noted that the challenges faced during the pandemic were largely due to the lack of involvement of DPOs in disaster planning before the pandemic; in fact, none of the DPOs had been invited to participate in consultation regarding such matters. In their view, many important issues would have been easier to implement and take into consideration if ‘you just do it from the start’. This was reflected in official plans and procedures as explained by a participant:

Naturally there need to be plans beforehand, you know. When you look into all the plans from the Department of Civil Protection and Emergency Management, they barely mention disabled people.

Thus, for participants, the situation that arose in the pandemic was predictable, in line with their experience in advocacy work. When authorities and institutions responsible for disability support systematically overlook disabled people and DPOs in response planning and deprioritise disability issues in times of crisis, it all comes down to disabled people themselves. One participant explained the burdensome nature of such invisible work:

I find it interesting to think of it in terms of women’s third shift. Disabled people have the third, the fourth and the fifth shift, you see. And I find it so frustrating that we can’t even be safe in a fucking pandemic when other citizens can just: ‘Ok, I can trust that officials are doing the right thing with all the scientists’. Disabled people always must have the initiative to protect themselves, plan and just do everything themselves […] I’m no specialist in this, you know? I don’t want to be planning reactions to a pandemic while other groups can just rest assured that someone is taking care of things for them.

Although DPOs had managed to successfully navigate important issues during the pandemic with relentless advocacy work, such sentiments of frustration and discouragement were common and discernible among study participants. While important disability issues and commitments to consultation were overlooked and deprioritized, DPOs were forced to shoulder responsibility during the pandemic, which they firmly believed should lie elsewhere.