The ideal of public deliberation forms a model of democracy that can be difficult to object to with good arguments. As Addis (2007) asks, who could object to the idea of a government that would approach societal problem solving with processes based on thoughtful and considered discussions and justified arguments between equal citizens? The truth, however, is that deliberative democracy includes notable challenges.
One specific dilemma within public deliberation is the dilemma of the ‘ordinary’ citizen. According to the supporters of public deliberation, for example, on the issue of health care priority setting, ‘when ordinary people are given the time and opportunity, they can participate meaningfully in decisions about the allocation of finite resources for health care’ (Lenaghan 1999). But how well does the whole population fit in the boundaries of ‘ordinary’? The term ordinary is situated under definitions of normality. Normal and ordinary are cultural and historical concepts and, for example, the bodily normality differs from person to person. In Western cultures it is taken for granted that normal, ordinary persons are independent, able-bodied, healthy and rational (Shakespeare 2007; see also Bauman 2007).
There is a danger that the basic assumption in public deliberation, despite the recent developments (see Bächtiger et al. 2010; Elstub 2010), rests still strongly on the idea of normality. There is a certain image of ordinary, normal and active citizens which is supposed to capture the whole human spectrum. This is an illusion and reflects the same discrimination and exclusion as the whole of Western society. Even certain participation undertakings may confirm existing patterns of social exclusion. The problem with public deliberation is that it may actually reflect the core values of the middle-class, well-educated mainstream society which only promote the exclusion of marginalized people, which has been the case in the UK, for example (Tritter 2009). Therefore, it is important to enhance participatory methods that enable the participation of all citizens (Lowndes, Pratchett, and Stoker 2001).
Disability is often argued to be a social phenomenon. Also in this article concepts such as disability and impairment are seen as socially constructed in specific cultural contexts (Vehmas 2002). People with disabilities are excluded from societal participation. The hindrances for participation result from prejudice, societal discrimination and marginalization. The people with disabilities are often labelled in a way which sustain institutionalized marginalization, create discriminating attitudes and practices. Foetal screening and abortions due to possible disability are based on ideas of normality. Abortion of a foetus with disability reassert notion, that the life of people with disabilities is not seen as valuable and desirable as the life of people without disabilities (Vehmas 2005). Traditionally people with disabilities are placed outside or to the borders of the society and excluded from the normal; in special schools, classes, work places, residential areas or institutions (e.g. Ministry of Social Affairs and Health 2012; National People with Disabilities and Carer Council 2009; United Nations 2007).
Also, right to vote is an important indicator of democracy. Universal suffrage was introduced in Finland 1906, but there were some exceptions to the right; people who received pensions or other type of financial support were seen as under guardianship and denied the right to vote. This rule was abolished in 1957. People with intellectual disability gained right to vote in 1972 (Helén and Jauho 2003). A majority of European Union Member States links the right to political participation to the legal capacity of the individual. These countries have an automatic or quasi-automatic exclusion provision in their legal systems. All persons under a protective measure such as a partial and plenary guardianship are denied the right to political participation, regardless of their actual level of functional ability or whether they have an intellectual disability or a mental health problem (European Union Agency for Fundamental Rights 2010).
Voting activities of people with disabilities are not possible to follow statistically in many countries, but the registration system used in the USA allows studying voter turnout related to disability. There is clear evidence indicating that people with disabilities are not yet equal participants in the American political system. Political participation is influenced by following factors, resources, psychology and recruitment (Verba, Schlozman, and Brady 1995). All these factors appear to contribute to lower voter turnout among people with disabilities (Schur and Adya 2012; Schur et al. 2002). People with disabilities are also less likely to participate in other forms of political activity, such as meetings or campaigning (Hall and Alvarez 2012; Schur 2003). In Finland, examples such as not being able to enter a city council hall in any other way than being carried, as the case was in the city of Vaasa still in 2012 (see Simons 2012) and not being able to function fully as member of the parliament due to restrictions of the environment, are not hard to find (Saraste and Könkkölä 1996).
Thus, people with disabilities are often defined as objects of different kinds of practices (Edwards 2008; Vehmas 2002), rather than equal and active participants in democratic societies. This can be seen to relate to the conceptualization of citizenship as a social citizenship, in contrast to an active citizenship (see e.g. Hästbacka and Nygård 2012). If the same pattern takes place in deliberative democracy, the implications for its legitimacy are significant. How deliberative democracy can deal with the issue of difference and diversity is then a question of utmost importance. Clifford (2012) sees that if deliberative democracy and its different applications cannot answer to this challenge, it loses a consequential part of its legitimacy.
This article has two objectives, one being more theoretical and the other more empirical. The theoretical and empirical analyses will complement each other and give a wider perspective on the relationship between deliberative democracy and disability. First, we will examine how deliberative democracy understands and acknowledges difference, diversity and, more specifically, disability. This will be tackled in section two, where two different traditions of deliberative democratic theory will be analysed. Second, we will analyse how one concrete format of deliberative democracy, i.e. the citizens' jury, is suited to involve people with disabilities in order to reach the whole human spectrum for public deliberation. A citizens' jury for people with disabilities, implemented in Finland during the summer of 2011, is used as an in-depth case study. In section three, citizens' jury format, this particular citizens' jury for people with disabilities, as well as methodological issues, are presented. Section four includes the analysis of the case study and section five the conclusions of the article.
Deliberative democracy is understood as a form of democracy that values discussion, reflection and consideration over mere voting (e.g. Chambers 2003). It can be described further through its three main criteria (Carson and Hartz-Karp 2005). The first is a demand for inclusivity, meaning that those participating in the deliberation should represent different societal views as well as possible. The second criterion includes the deliberative discussion itself. An ideal speech situation should be created where everybody can present their opinions, where everybody is listened to and where the societal background of the participants does not influence the process of the discussions (Cohen 2009; Habermas 1999). Finally, public deliberation should strive for effectiveness and an actual feeling of involvement.
Ideally, deliberative democracy produces two kinds of value, instrumental and expressive (Gutmann and Thompson 2004). However, there exists a threat that the different applications of deliberative democracy are just built up to be mechanisms of influence for those who are well off. As the inequality in Western societies is growing (OECD 2011), this very real threat becomes such that it cannot be ignored. Developments within deliberative democratic theory itself can influence this, both in negative and positive ways. This is so because different strands of the theory see inclusiveness in different ways, especially when it comes to the inclusion of people with disabilities. Next, the two main strands of deliberative democracy will be examined, first separately then together. In order to make the differences between the strands more visible, these differences are intentionally intensified. In reality these two strands are not mutually exclusive.
Deliberative democracy in its classical form is highly idealistic. The idea is that different people having different opinions and preferences come together. They discuss together, they listen to each other and they give their arguments. Through this deliberation one rationally justified best solution, based on consensus and the common good, is reached. In the deliberations self-interests are absent, as well as any manipulations, negotiations, bargaining or use of power (Mansbridge et al. 2010; see also Tveit and Walseth 2012).
In this strand of deliberative democracy deliberation is understood as a purely cognitive process. Emotions and irrationalities should be avoided, making the deliberations highly dispassionate (see Yankelovich 2011). This sets certain cognitive demands, or ‘deliberative capacities’ (Cohen 1991), for the participants in the deliberations. The assertion is that only when these demands or capacities are met, can participants equally participate in the deliberation. This view is justified with the argument that deliberators have to be able to understand each other. Clifford (2012) refers here to Habermas’ (1970) example of psychotic speech: ‘Only the psychotic can understand his own private utterance. No amount of listening can enable other participants to comprehend his incoherent speech’. Bächtiger et al. (2010) name rational and consensus driven deliberation, as described above, as type I deliberation.
To fulfil this demand for cognitively suitable deliberators the classical view of deliberative democracy has, in return, to give up the demand for inclusivity. Clifford (2012) points out the two approaches that have been suggested for this dilemma. First is the argument that the legitimacy of public deliberation is actually not lessened because of the small number of cognitively impaired people. The second approach suggests that these particular people are to be represented by their guardians or relevant experts. In both approaches cognitively impaired persons themselves are then left outside of public deliberation.
The preceding addresses the liberal premise of the classical view to deliberative democracy. According to Walsh (2011), liberal deliberative theorists, by increasing responsiveness and political participation, strive to respond to the challenges of the contemporary liberal democracies, such as low voter turnout. As such, liberal deliberative democracy does not directly focus on societal power imbalances or on existing inequalities in the public sphere (see also Elstub 2010; Ferree et al. 2002).
The premise of the expanded strand of deliberative democracy is a more critical one. According to Walsh (2011) critical deliberative theorists focus on the ‘limits of democracy’. The aim is not to mend liberal democracies per se but to articulate the injustices within. Instead of reasonableness, rationality and consensus; openness, inclusiveness and contestation are valued. As a result a more just public sphere can be created (see also Bächtiger et al. 2010; Elstub 2010; Ferree et al. 2002).
According to critical deliberative democrats there exists informal exclusion that marginalizes the already disadvantaged groups. This problem is not tackled merely by giving all citizens a possibility to participate in the public sphere (Walsh 2011). For example, Sanders (1997) states that the goal of deliberative democracy should be a more fundamental one: ‘to try to ensure that those who are usually left out of public discussions learn to speak whether their perspectives are common or not, and those who usually dominate learn to hear the perspectives of others’.
The expanded form of deliberative democracy also puts an emphasis on the role of affect in public deliberation (Morrell 2010). Traditionally, affect has been considered more as a negative than a positive part of deliberation. Emotions are seen as irrationalities, only hindering the cognitive processes of deliberations. However, Yankelovich (2011) points out that even though there are negative factors, such as denial, stubbornness and cognitive dissonance, there are also positive factors, such as passion, sympathy and enthusiasm, arising from the affective side of deliberation. On emotion-laden issues, that are often the focus of public deliberation, the latter factors are highly important. For example, according to Morrell (2010) and Yankelovich (2011), a full and sustainable outcome is gained when deliberation takes place not only in the head but also in the heart.
Without affect there would not be any empathy in deliberative democracy. As the virtue of public deliberation is about the common world, common problems and finally the common good, the absence of empathy would be a critical barrier for deliberation to succeed (see Morrell 2010). Problems of empathy are formed because the reality of people easily builds up to be one-sided. Different opinions and preferences are then left only as background noise (Pekonen 2011). As a consequence, majority views may become legitimated under the guise of collective decision-making.
In addition, the classical strand of deliberative democracy views that participants of the deliberation need to have ‘deliberative capacities’ (Cohen 1991), i.e. to meet certain cognitive demands, whereas according to the developed strand of deliberative democracy virtually everybody is considered being fit for deliberation. The argument is that there is no one truth to political wicked problems (Rittel and Webber 1973). These are highly complex, ambiguous and divergent problems; problems that are both very hard to define in a clear and widely acceptable way, and extremely difficult – even impossible – to solve to the enduring satisfaction of the contending stakeholders. We can only try to manage these problems the best way we can. In wicked problems every one of us is cognitively limited, making the division of cognitively capable and cognitively incapable pointless (e.g. Pekonen 2011). Examples in the literature are such as urban planning (Xiang 2013), reforming health care system (Vartiainen 2008) and tackling climate change (Lazarus 2009).
Authentic inclusiveness requires the acceptance of many different ways of communication within public deliberation. If only a certain kind of communication is allowed in deliberation, i.e. calm, dispassionate, literal and disembodied speech, an advantage is given to certain social groups which already are privileged. According to Young (1996), excluding the influence of political and economic power from the deliberation is then not a sufficient requisite for making public deliberation equal. The way we communicate also influences deliberations. However, the objective should not be to make communication culturally and socially ‘neutral’. This would ignore what is important to participants in the deliberations. As Addis (2007) writes: ‘Full participation entails participants being able to bring all of whom they are (not just part of who they are) to the deliberative process’.
The preceding calls for the acceptance of many different ways of verbal communication, such as storytelling and the use of metaphors, but also many different ways of embodied communication, such as dance and varied body expressions (see e.g. Dryzek 2010; Mansbridge et al. 2010; Walsh 2011; Young 1996). Clifford (2012) especially emphasizes the latter way of communication. For her, not only verbally expressed viewpoints, but also the presence of ‘diverse bodies’ create new kinds of perspectives, raise new questions and decrease the prejudices between people. This relates to the ‘politics of presence’, by Phillips (1995). For both, Phillips and Clifford, embodiment is an important issue. By being present, it becomes possible for marginalized sections of people, such as people with disabilities, to influence better, and to be recognized by the majority. Bächtiger et al. (2010) name deliberation that accepts all forms of communication, in contrast to potentially utopian and exclusionary type I deliberation, as type II deliberation.
These two different strands of deliberative democratic theory, presented above, form two different views of disability in deliberative democracy. These are depicted in Table 1. From the viewpoint of people with disabilities the classic form of deliberative democracy appears to be threatening. It clearly favours those already privileged. If inclusiveness is considered as one of the main criteria of deliberative democracy and if it is weakened by forbidding certain people from participating in deliberation, the legitimacy of deliberative democracy lessens and a risk of creating unjust decisions increases.
|Disability in deliberative democracy||Classical, liberal and cognitive side of deliberation||Expanded, critical and affective side of deliberation|
|Premise||To strive to respond to the challenges of contemporary liberal democracies.||To examine the ‘limits of democracy’ by articulating the injustices within.|
|Cognition/affect||Deliberation understood as a purely cognitive process.||Emphasis on the role of affect in public deliberation.|
|Communication||Favours calm, dispassionate, literal and disembodied speech.||Accepts many different ways of verbal and embodied communication.|
|Inclusiveness||Cognitively impaired persons and the speech-impaired population are left outside of public deliberation.||As every one of us is cognitively limited, everybody is considered having ‘deliberative capacities’.|
|Legitimacy||The legitimacy of deliberative democracy is questionable.||As inclusiveness increases, the legitimacy of deliberative democracy strengthens.|
Instead, the expanded form of deliberative democracy is realized to be more attractive from the viewpoint of people with disabilities. This is especially true for cognitively impaired persons and the speech-impaired population. For these people, compared to people with physical disability, the value of accepting the many different ways of verbal and embodied communication becomes emphasized. In the expanded form of deliberative democracy the difference and diversity is acknowledged and accepted. A voice, vocal or embodied, is given equally to everybody, i.e. each and every one is recognized of having the capability of bringing new opinions and preferences to the deliberations and thus having an impact on the result of the deliberations. Also, through the acceptance of affect and empathy within deliberation, the understanding of the life situations of others grows. Legitimacy increases as a consequence of widened inclusiveness minorities can better influence majorities (e.g. Addis 2007; Wheatley 2003).
Deliberative democratic theory is a highly normative theory (e.g. Chambers 2003). Deliberative democrats thus strive to create carefully detailed processes, so-called mini-publics, for increasing the legitimacy of decisions created through deliberation. These include, among others, citizens' juries, consensus conferences and deliberative polling. As the model used as a case study in this article is a citizens' jury, will it be presented next; first on a general level and then in relation to enclave deliberation and the wider deliberative system.
The citizens' jury format was invented by American Ned Crosby in the 1970s. He saw the existing models of citizen participation as inadequate. For Crosby, these models, such as opinion polls, did not reflect the actual ‘will of the people’ (Crosby and Nethercut 2005; see also Yankelovich 2011). Citizens' jury was then designed to form a microcosm of the whole population that is affected by the issue under deliberation and where participants are enabled to gain information about the issue, and to discuss with experts and their fellow citizens. The argument was that participatory format such as citizens' jury would be likely to make a decision in a way that the whole population would, if given enough time and information and deliberative opportunities. Decision would then reflect a considered judgement of the citizens. Consequently citizens' jury should be able to wield some influence, i.e. it is not mere talk. Since 1970s, citizens' juries have been implemented worldwide. In the UK alone, more than 200 citizens' juries have taken place (Parkinson 2004).
Seven principles have emerged as central to the citizens' jury. Firstly an objective is to form the target population in miniature. A legitimizing method of ensuring inclusion from the target population is to apply stratified random selection to gain participants (see Carson and Martin 1999). Also the size of the jury should not be too large – generally 24 maximum. Information given to the jurors is of high quality. Similarly facilitators strive to guarantee the high quality of deliberative discussions. All manipulation is forbidden, and the total process is driven by ideals of equality and fairness. Finally there should be enough time for deliberation, usually between three to five days (Crosby and Nethercut 2005). During the days of the citizens' jury, jurors question ‘expert witnesses’, they deliberate both in small groups and in the whole group and collaborate to produce a final declaration which is to be publicly presented at a media conference. The relevant policy makers should always give an official response in which the recommendations of the jury are acknowledged.
Even though the aim of a citizens' jury is usually to form a municipality, region or country in a miniature, there exists also citizens' juries implemented for certain populations. Additionally for a citizens' jury for people with disabilities, there have been, for example, citizens' juries for immigrants, for elderly people and for young people (e.g. Carson 2004).
Compared to traditional citizens' juries, citizens' juries for certain populations usually need more preparations. For example, when jury consist of young people, it is important to attend to group dynamics, i.e. ‘ganging up’ and similarly to individual vulnerability, i.e. to be seen as ‘uncool’ (Carson 2004). Similarly, in a citizens' jury for people with disabilities many prerequisites need to be taken into account (e.g. Edwards 2008). For example, if people are invited to participate only through written information which requires filling in some sort of questionnaire, persons with dyslexia or limited vision are ruled out. If the deliberation is situated in a building with no wheelchair access it is impossible for persons with limited mobility to participate. Furthermore, if the deliberation is carried out in a room with poor acoustics or without the help of an interpreter it hinders the participation of people with hearing challenges. Even the echoing in the room, the flickering of florescent lights, noisy situations and a room filled with sensory stimulants prevents people with autism spectrum disorders to participate. Also, the avoidance of unfamiliar social situations prevents people with mental problems to participate.
In the literature on deliberative democratic theory these kind of deliberative formats are often classified as enclave deliberation (see e.g. Baur and Abma 2011; Karpowitz, Raphael and Hammond 2009; Nierse and Abma 2011). Enclave deliberation refers to deliberation among a homogenous group of people (Sunstein 2000). Group polarization is seen as the most significant negative consequence of enclave deliberation. Sunstein (2003) refers to a situation where ‘members of a deliberating group predictably move toward a more extreme point in the direction indicated by the members’ pre-deliberation tendencies’. Compared to the deliberation of more heterogeneous individuals, enclave deliberation is considered to be at greater risk of group polarization. However, as Karpowitz et al. (2009) note, it is possible to avoid the worrisome aspects of enclave deliberation with a good design of the deliberative models.
A positive aspect of enclave deliberation is its potential for creating spaces for disempowered or marginalized people (e.g. Baur and Abma 2011; Karpowitz et al. 2009; Nierse and Abma 2011; Sunstein 2000). Mini-publics, and deliberative democracy overall, can tacitly concede to prevailing imbalances of power, wealth and education (see e.g. Sanders 1997). As a result, some voices are missed from deliberation. Thus Sunstein (2000) states that ‘enclave deliberation might be the only way to ensure that those views are developed and eventually heard’.
In enclave deliberation a safe space is created for everybody to voice their opinions and be heard. Most importantly in an enclave one can be who one is. For Simone (2010) enclave deliberation forms then a possibility for disempowered and marginalized people to ‘find the protected spaces they require to develop discourse’. This discourse will be eventually shared in an open space (see also Dahlberg 2007; Vasilev 2013).
The assertion here, however, is not that enclave deliberation, such as citizens' jury for people with disabilities, should struggle with the objective of making democracy universally accessible. On the contrary the assertion is, following the writings of Hendriks (2006), Dahlberg (2007), Simone (2010), Vasilev (2013) and Mansbridge et al. (2012), that democratic systems become stronger when all the different kinds of deliberative mechanisms are supported in the wider ‘deliberative system’. The diversity of these different deliberative mechanisms should be celebrated as well the connections between these mechanisms fostered (Hendriks 2006; see also Dryzek 2010). As a result whole human spectrum would be part of the deliberative system, being that in protective enclaves or in more contesting open spaces.
The national development programme for services for people with disabilities implemented a citizens' jury for people with disabilities in the summer of 2011. The objective of the jury was to support the project management of the Finnish national development programme for services for people with disabilities, to strengthen the voice of people with disabilities and to offer a new way of influencing societal decision-making, especially related to disability policies. The jury was regional. Participants came from the Ostrobothia and Southern Ostrobothia areas of Finland. Persons over 16 years and who lived with some disability or long-term disease were able to sign up for the jury. After a wide marketing campaign, 22 registrations were received. From these, 10 people were chosen to participate in the jury. In the selection it was important that all groups and areas were well represented. The applicants were divided according to their reported illness or disability; intellectual disability, physical disability, mental disability, hearing or visual impairment, mental and neurological disorders. Physical disability refers here to impairments concerning mobility. Also all needed assistants and aids were provided.
From the 10 people chosen to the jury, in the end three did not participate. Two of them were persons with intellectual disabilities and one with a neurological disability. Even though two substitute jurors were chosen, people with intellectual disabilities did not have representatives in the jury (see Table 2).
|Disability||Number of applicants||Participated in the jury|
|Mental and neurological disorders||4||2|
Three participants were male and six female. Three had been very active to participate previously, four quite a lot, one only little and one had not previously participated in anything. In Table 3 the age groups of the participants are presented. The majority of jurors were from Southern Ostrobothnia, only one from Ostrobothnia.
All of the nine jurors were interviewed soon after the jury. Semi-structured qualitative interviews were carried out at the workplaces or homes of the jurors. The longest of the interviews lasted for 108 minutes and the shortest for 25 minutes. The interviews were transcribed for analysis. The transcribed interviews made up 75 pages altogether, with line spacing 1 and font 12p. The interviewees were coded randomly 1–9. The interviews were analysed through directed content analysis. Below, the analysis is presented under certain themes, following the structure of the interviews. In the summary, the results are analysed more directly in relation to the theoretical background of this article.
Ethical considerations were taken into consideration in every stage of the research. First of all, the development programme had two steering groups – one consisted of authorities and the other of clients – that supervised the planning and the implementation of the jury. Also, all of the jurors were informed that research will be done on the jury. Similarly, all of the jurors signed a consent form that gave permission, for example, to use the photos taken from the jury in the media.
The first threshold that organizing a citizens' jury has to transcend is how to activate people to participate (e.g. Crosby and Nethercut 2005). What motivates people with disabilities to participate? The reason for participation varied from participant to participant. First, it was thought that the citizens' jury would make it possible to influence the disability policy generally, but also more specific topics: ‘(I participated) … Because I saw a possibility to influence the promotion of the affairs of the disabled people, people like me. That gained my attention’ (Juror 1). Related to this it was considered that more information would be received and a wider perspective to the topic obtained. Second, participants, especially those with a more active background, saw the novelty of the first Finnish citizens' jury for people with disabilities as inspiring and exciting.
Those with a less active background, in turn, needed more push to participate. For example, one of the jurors was encouraged to take part by her advocacy organization. Two other jurors, even though they considered the threshold for participation to be high, were encouraged to participate on their own initiative: ‘Well I read the advertisement from the paper and I thought that if I would have something to give. In some way it just fascinated, that what it is … and I even little bit startled when I was chosen’ (Juror 6).
Arranging a jury for people with disabilities requires careful planning and preparations. A lot of pre-information had to be gathered considering the necessary aids, assistants, interpreters, accessibility of the localities and required transportation (Edwards 2008). Every juror was contacted beforehand to make sure that everything would function according to their needs. This seems to have succeeded quite well. For example, jurors stated that it is nice and considerate from the organizers of the jury to take contact various times during the project and to inquire if there was anything that should be taken into account so that the jury would succeed as well as possible on the part of every juror.
When planning citizens' juries generally, and more specifically for people with disabilities, the location is one important issue to consider. First of all, the location should be such that it is equal towards all the participants. This means that the location may also be changed during the days of the jury, so that the travel time divides equally between the participants. Second, location should have a good accessibility. Third, the location would ideally have some symbolical value, such as being located at the council hall (Niemeyer and Russell 2005). Similarly, location should not carry any stigma.
Considering the preceding points, the first day of the jury, 7 June 2011, was situated in Seinäjoki, at Eskoo, the joint municipal authority of social services. All of the jurors perceived Eskoo to be a good place for the jury. It was already familiar to many and it was easy to find. Eskoo was seen as a place with good accessibility and as a place that is more ‘understandable’ towards people with disabilities. However, Eskoo has an image of providing institutional care only for people with intellectual disabilities. Even though the service production has been expanded and this image has been uplifted, one juror considered Eskoo still to have a certain negative ring to it.
On the first day of the jury, jurors were given a chance to choose the witnesses they wanted to question on the second day of the jury. Thus a break was needed between the first and second days of the jury, so that there would be enough time to contact these possible witnesses. The second and third days of the citizens' jury took place in Vaasa, at the University of Vaasa on 24–25 August 2011. The reason for the change in location was that the jury would then be located equally in both Ostrobothia and Southern Ostrobothia, an area of almost 22,000 km2. Those jurors who commented on the location regarded this very positively. It was, for example, said that it was interesting to see the milieu of the university, that the university was a neutral and more official place for the deliberations and that it was nice to say that one is going to a seminar at the university.
On the first day of the jury, jurors named the professionals and experts, so-called witnesses, they wanted to question in order to gain more information for the deliberation (Crosby and Nethercut 2005). All together, over 20 experts were contacted. Seven of these people accepted the invitation. However, two of the witnesses had to cancel a few days before the jury. Five witnesses came to present the views of: one specific municipality, the Regional State Administrative Agency, the Regional Council, the diocese and academia. The witnesses were questioned in a panel format during the second day of the jury. The panel was moderated by an outside expert.
When asked, most of the jurors stated that they were more or less unsatisfied with the composition of the panel. Three jurors were especially disappointed that the ministers invited to the panel could not come because of the prolonged nominations of the Finnish government and scheduling difficulties as a result. It was seen that the ministers would have brought certain heat to the panel sessions and also improved the overall influence of the jury.
The panellists received both negative and positive comments. First, some of the panellists were criticized for having too narrow perspectives and not enough authority to influence, and for turning to politics. More in-depth and straight answers were hoped for, as well as avoidance of excessive officialese. Also, in one rare case, one of the jurors reacted especially strongly to certain comments of one panellist. In this case the issue was such that the panellist stated his interest to be more in the philosophical aspects of disability than on the actual influencing to the disability policy. The juror considered this attitude to be demeaning.
Generally jurors enjoyed the stance of the panellists. It was perceived that they were present not only as experts, but also as oneself. The situation overall was considered very easygoing and open. This seemed to increase the jurors’ trust towards the panellists. Positive comments were given especially to those panellists who were livelier than others. One of the objectives of the panel sessions is that every participant would be equal. This seemed to succeed:
Also the moderator of the panel was perceived quite positively. In their comments, the majority of the jurors stated that the moderator was competent and pleasant. She was able to keep to the schedule and to give the floor to the participants equally: ‘She was really very good and was able to carry out her role just the way it should be carried out. Not in a judgment spirit but convivially’ (Juror 1). However, two of the jurors did not share these positive views. It was thought that the moderator was very strict; that she kept the panel discussions in too tight a grip. While one juror thought this made it intimidating to say anything, the other was strongly offended by the moderator. One reason for the critique of the moderator to be too intimidating can be caused by interpretation; it is very difficult to interpret all nuances of a language in sign language. This experience only reminds us just how much gestures, invisible parentheses and body expressions are a part of communication and what importance interpretation can have in juries with two or more languages (e.g. Clifford 2012; see also Parry 2007). The juror, who was offended construed the moderator's efforts to give equal time to everyone and limiting his long monologues as if the moderator had something against him.
If we think that our panel was basically relatively prestigious, nonetheless they then came to the same level where we were. Then it was easy to have a discussion with them and to ask questions. I think it succeeded exceedingly well and in a way that they didn't start anything official, but that it was just open discussion that took place. (Juror 7)
During the three days of the jury, jurors deliberated in small groups and within the whole group. Most of the time jurors were divided into two smaller groups, the compositions of which varied through the days. Both small groups had two facilitators, one being responsible for facilitating and the other for documenting the discussions. All of the jurors were satisfied with the facilitators. It was appreciated that they were able to create a warm atmosphere for the discussions, i.e. an ideal speech situation (Habermas 1999). This included that the facilitators gave everybody an equal chance to state their opinions, ensured that also the more quiet ones participated in the discussions, and were able to summarize the discussions and facilitate the discussion forward when it stalled. The facilitators’ duty was also to make sure that the more vocal participants did not dominate the discussion. In one juror's opinion this could have been improved slightly, so that the time would not have gone on telling lengthy personal life stories.
When asked, jurors explicitly stated that they had their opinions voiced, and also heard, in the small groups; in one quieter juror's opinion maybe even too much. The feeling was almost similar towards discussions within the whole group, even though it was considered slightly more daring to speak out loud then. Generally, jurors would have wanted more time for small group discussions. One reason behind this was that everybody is an individual and for some it takes longer to get to know others and to state their opinions out loud: ‘Well, I just thought, also tensed up, little bit startled, that can I be here now. But then I realized that these are my opinions and affairs that I am telling. I have a full right to them’ (Juror 6).
On the part of one juror with a visual disability one specific hindrance was mentioned in relation to the discussions within the jury. For the juror, difficulties in identifying people hindered the process. Even though an assistant was able to support with identification, it became hard to remember people's names. This became problematic, for example, when it was needed to point out a certain juror in the discussion.
On the last day of the citizens' jury, jurors wrote their declaration and presented it in a press conference. All but one juror was considered to be satisfied with the result. The juror who was not fully satisfied with the declaration perceived that some of the suggestions were ignored in the final version of the declaration. As a reason it was seen that those who were ‘more disabled’ had more voice in the jury, than those who did not look to be disabled. This refers to the tension between different disability groups (see Bonfils 2011).
Jurors were hopeful about the effectiveness of the declaration. Even though some scepticism was present, jurors genuinely hoped that decision-makers would acknowledge the jury's work and act on it: ‘That it wouldn't just be left to some paper pile, but that it would have an influence on real steps forward’ (Juror 9). It was also acknowledged that while some issues were ones that would be fairly easy to implement, other issues would take a longer time. In the interviews jurors hoped that they would be informed about the progress of the declaration.
It is argued that public deliberation can increase empathy between different individuals (Morrell 2010). Empathy was highlighted as a positive result from the jury. Five jurors pointed this out very clearly. This resulted in the development of a sense of connection to each other: ‘When people very creatively told about themselves, I noticed that I am not the only one who has these obstacles in life’ (Juror 9). Understanding and empathy between different groups of disability increased. For example, one juror said that when she heard the experiences of another juror using a wheelchair, this made a strong impact on her (cf. Young 1996). The juror told about her workplace in a tall building, which made it concrete what kind of, even life-threatening, situations people with physical disability can face in everyday life; the risk of fire was used as an example. Also one other juror suggested clearly that he had experienced a similar process, in this case it concerned speech impairment, which made it difficult to understand the speech of one juror:
It was hoped that this empathic side of deliberation would take place also more widely: ‘Panelists, members of the jury and you researchers, three kinds of people. If an attitudinal eye opening took place amongst these three groups of people that is the most important thing’ (Juror 3).
Then I took a hold of myself and told (myself), that as she is also a member of this jury, she has just as equal right as I do to be heard. And I tried to concentrate on her, and not just to hear what she says, but also think about what she says. In this case, even I, as I consider myself a quite sophisticated and social person, I noticed that also I need to increase this kind of tolerance. (Juror 3)
As positive sides of the jury, also the panel sessions, writing out the declaration, increased optimism, and establishment of social networks were mentioned. Similarly, a feeling of influencing was important, even empowering, for many. One of the jurors verbalized this, when asked about his feelings after the jury: ‘Well damn good, as I feel that I am not yet totally useless in this society’ (Juror 6). It was seen as important that decision-makers get information from the people who are the ones facing the obstacles, i.e. ‘the experts on their own life experience’ (Ferree et al. 2002): ‘How could they know just by reading books, how much it hurts’ (Juror 1).
The lack of time was highlighted as one of the negative sides of the jury. On the other hand, it was mentioned that the days were already quite long:
Two jurors saw it as a negative factor that the organizers of the citizens' jury gave up too easily with the certain invited panellists and media. Even though in the time after the jury it has aroused a lot of interest, during the jury, only a few newspaper articles were written. As other negative matters certain bitterness on the part of one juror, the loss of individuality as the focus was on a larger theme and the small audience in the press conference were mentioned. Also hearing aids could have been used more.
I was tired but happy. I was slightly exhausted and I slept very heavy the next night. So it was hard. Even though I am very chatty, I was both mentally and physically totally tired. I needed three days to recover from it. (Juror 1)
All of the jurors reacted positively to the possible usage of citizens' juries in the future. It was seen that juries differ in many ways from the traditional ways of influencing. First of all, jurors stated that compared to voting and traditional public meetings, juries are more interactive. Also the ‘safeness’ of the jury setting was mentioned:
Similarly it was highlighted that the citizens' jury is equal towards everyone, in contrast to general events where usually those who speak a lot and loudly get their voices heard and the others are left in the background.
I think when we think about the ways of influencing, this citizens' jury is really a form that brings people together and such that creates a trustworthy feeling, as it happened now during the days. That one can really show what one really wants to show and to say. (Juror 2)
The citizens' jury was also compared to third sector organizations. The opinion was that even though these organizations are working well and are needed, they are usually run by the same strong persons: ‘… but I think there should also be something else that you can be yourself and you have something through which you influence and come to the fore’ (Juror 5).
However, if citizens' juries are to be used more frequently in the future, some issues are needed to be taken into account. Jurors called for more jurors and more representative juries, more influential witnesses and most importantly evidence on the effectiveness of this particular jury. Juries could be not only local or regional but also national or even international. Similarly, jurors stated that these citizens' juries do not need to be only for people with disabilities, but as these issues are common to each of us, they could be for the whole population.
Compared to the two strands of deliberative democracy presented in section two, the citizens' jury for people with disabilities is situated especially strongly in the expanded, critical and affective side of deliberative democracy (see Table 4). The premise is on the empowerment of people with disabilities. It is then not merely about promoting participation, but more about involving people who are usually excluded from participation due to social and physical hindrances. Jurors who participated in the jury had a strong will to influence, even though some of them needed a little encouragement to get involved or were even frightful when they were actually chosen to the jury. Jurors felt that they were the right people to have their say. Participation for those who have been marginalized can matter significantly. It can be even empowering. This is not an easy task to achieve. A more fundamental approach would be in place than just to give everybody an equal chance to participate (Sanders 1997).
|Disability in a citizens' jury format of deliberative democracy||Citizens' jury for people with disabilities|
|Premise||Empowerment of people with disabilities|
|Cognition/affect||Empathy in an important role|
|Inclusiveness||Everybody having an equal right to be heard|
|Legitimacy||Increased legitimacy by investing in quality of deliberation, effectiveness of the declaration and inclusiveness of the jury|
The meaning of empathy was emphasized in the jury. It was important to be able to see through another's eyes. Then, the significance of the other is noticed (see Morrell 2010). Also different ways of communication were allowed and encouraged in the jury, i.e. this was an example of type II deliberation (Bächtiger et al. 2010). By making sign language interpreters available the juror with complete hearing-impairment could communicate with the other jurors by using her first language and thus bring all what she is to the deliberation (Addis 2007). Similarly, by using stories it became easier to make people understand and acknowledge the perspectives of others (Young 1996).
The legitimacy of the citizens' jury is constructed of the three interlinked aspect of deliberative democracy, i.e. inclusiveness, deliberative discussion and effectiveness (Carson and Hartz-Karp 2005). On inclusiveness, more jurors and more representative juries were called for. Also, as the people with intellectual disabilities were not represented in the jury, inclusiveness was not what was strived for in the end.
When it comes to the deliberative discussions, jurors considered that having discussions in a warm atmosphere made them able to be what they are; to say what they had to say and to be heard equally. In a safe place for discussion (see Fishkin 2009), with the help of the facilitators, even the more quiet ones felt able to speak their opinions out loud. It was also appreciated that the panellists came to the discussions as themselves, on the same equal level as the jurors. The university, as a neutral place for the deliberations, might have had a similar influence on the deliberations.
For the jurors, effectiveness of the jury was an important factor. Similar results have also been received from other juries (see Segall 2005). After working hard for many days, concrete results are called for. However, as much time has not yet passed after the jury, it is hard to estimate its effectiveness. Also, evaluation of the jury's actual influence is difficult to gauge as the jury covered such a large area. These two regions, Ostrobothia and Southern Ostrobothia, together consist of 35 municipalities.
There is knowledge of actions taken because of this particular citizens' jury. Some examples are a successful council initiative in one of the municipalities to increase the transparency of governance and the bishopric initiated accessibility evaluation in the parishes. The developmental project drafted a plan for one more year and directed some actions according to the jury's declaration. In some municipalities in the area the declaration has been presented to the decision-makers. Different associations for people with disabilities have discussed and reacted, if possible, to the declaration. Also, organizers of the jury disseminated information about the jury by writing to several relevant Finnish practitioner journals. Additionally, as jurors had hoped, they were invited back six months after the jury. They were briefed then on what had happened so far. This was highly appreciated by the jurors. It is important to close the feedback loop by keeping jurors up to date on what is happening after the jury ends. In the end, it can be acknowledged that participation in this jury was worth much more than mere decoration or tokenism (see Arnstein 1969; Hart 1992).
Deliberative democracy is one of the fastest developing trends, both as a theory and practice, in the field of democracy development (e.g. Nabatchi 2010). As the significance of deliberative democracy grows, those academics and practitioners developing the theory and its different practical formats can be considered to be liable for the society for their actions, as these actions can have major consequences. The future development will show if these consequences will be positive or negative. One influential factor is that deliberative democracy will develop in a more critical direction. This is highly consequential for those people who fall outside the limits of the ‘ordinary’, which is the requisite in the classical form of deliberative democracy. One such group is people with disabilities, especially cognitively and speech-impaired persons. The question then is if deliberative democracy will form out to be an engagement format for only the middle-class, well-educated mainstream, or a way of involvement for the whole human spectrum.
This is a challenge faced both on the theoretical and the practical sides of deliberative democracy. As theory and practice develop hand in hand, it is important to examine these two together. On the theoretical side a more critical approach is needed; one that strives to give voice, embodied and vocal, equally to everybody. This can be considered as a prerequisite for a more just society. On the practical side it is necessary to experiment with different formats of deliberative democracy with the objective of more comprehensive inclusiveness. In this article a citizens' jury for people with disabilities was analysed from this particular perspective. The analysis shows that the citizens' jury for people with disabilities can enhance the participation of the whole human spectrum in the wider deliberative system. This result gives indications for the improvement of deliberative democratic theory to acknowledge enclave deliberation more positively; not to mention it only in the footnotes as a risk factor or as an emancipatory practice, but instead to consider it as a significant part of the theory. As Karpowitz et al. (2009) suggest enclave deliberation among the disempowered should be cheered, not feared. By supporting all the different kinds of deliberative mechanisms – being those traditional citizens' juries, citizens' juries for disabled people or, for example, for immigrants and young people – as a result contemporary democratic system would become incrementally, and in its entirety, more stronger and equal towards all.
This case study provided valuable experiences how to take into consideration of different needs which in turn promote accessibility of all people. This is, however, only an indicative result, based on one experiment. More research is needed. In relation to future research we would highlight three issues. The most important is the absence of people with intellectual disabilities. This is a matter that needs to be taken into serious consideration in the future juries. One way forward could be implementing, to begin with, deliberation solely for the people with intellectual disabilities (see Nierse and Abma 2011). This kind of enclave deliberation could ideally work as a channel of a fuller societal participation for the people with intellectual disabilities.
Second, organizers must note that the certain arrangements needed in the citizens' jury for people with disabilities, such as usage of wheelchair assistants, sign-language interpreters and technical aids, may increase the costs of public participation, which need to be taken into account when drawing up the budget. This is fundamentally about an ethical choice on what we value. If we give value to the inclusiveness of public deliberation, we can then be flexible on what comes to the additional costs.
Third, the influence of the citizens' jury for people with disabilities raises questions. What should be the optimal level of influence? Should there be a direct decision-making power or would it be enough for the jury to act in an advisory relationship to the policy? An important question to be asked is also what actually counts as influence? We argue that more value should be given to the expressive value of public deliberation. In the citizens' jury for people with disabilities, analysed in this article, this expressive value was clearly seen in the increased empathy between different people as well as the empowerment of the jury participants. These results matter significantly, and are in no lesser value than the more instrumental results, such as impacts on policy-making.
This research is part of the project ‘Citizen's voice: Analysis of the prospects of deliberative democracy in Finnish health care’ (2011–2014), funded by the Academy of Finland.
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