Livin’ in the future: Conceptualising the future of UK disability activism through utopian,retrotopian and heterotopian configurations

Abstract

The article explores how the future is imagined through disability activism. It highlights how UK Disabled People’s Movement members, established and newcomers, envisage inclusive and accessible societies and what role disability activism has in realising such visions. To achieve this, conceptualisations of the future are mapped within a framework of three topias (places/worlds): utopia, retrotopia and heterotopia. These topian configurations provide a way to make sense of activist visions for progressing disabled people’s emancipation. The article argues that the UK Disabled People’s Movement currently produces two dominant conceptualisations of the future: a deterministic, radical overhaul of political and economic arrangements (utopia); and a return to ‘purer’ forms of disability activism produced by historical activists and their networks (retrotopia). Young disabled activists who do not align with such conceptualisations are denied opportunities to influence broad activist strategies and are, instead, relegated to opportunities that necessitate a youth perspective. Young disabled activist’s conceptualisations of the future can be best understood as the production of counter sites, which generate activities, politics and discourses around notions of inclusion, social justice and accessibility (heterotopia). These produce possible and preferable alternatives to the current ordering of the social world – with disability activism becoming spaces that encourage creativity of new ideas, new practices and new options against existing norms and inaccessible worlds.

Keywords

disability activism disabled people’s social movements future heterotopia retrotopia utopia young disabled people

Introduction

Social movements are essential for exposing the injustices that remain present in contemporary society. Their configurations, strategies and tactics engage with material and discursive aspects that perpetuate individual and communal experiences of marginalisation, oppression and repression. Social Movement Studies provide insight into the ideas and conceptual frameworks embedded within social movement organisation (Millward & Takhar 2019). This can lead to the identification of key social issues, identities and politics that influence social movement formation, coalescence and their longevity. Scholarly activity has given less attention to how conceptualisations of the future affect the inclusion and valued contributions of social movement members. The participation of newcomers, and members who are typically excluded from activism and resistance practices, is an area underdeveloped within sociological and social movement inquiry (Griffiths 2019). Furthermore, the study of disability can provide original and invigorated insight for Social Movement Studies. It can broaden the sociological critique necessary to improve disabled people’s lives. Activist networks, disabled people’s social movements, and Disability Studies have repositioned disability away from individualised, overtly medical, narratives of individual suffering and tragedy (Soldatic & Johnson 2021). Disability is now investigated to critique the political, economic, social and cultural arrangements that produce the social world. Its centrality within studies on resistance allows for a reimagining of accessible and inclusive societies.

Investigations are required into the experiences of marginalised social movement members to understand the relation between power, participation and resistance within a social movement. This article incorporates disabled people’s experiences and perspectives of disability activism, politics and the perceived goals and demands of the UK Disabled People’s Movement (DPM). It draws from empirical data captured between 2015 and 2020, from the first study on young disabled people’s contemporary position within UK disability activism. The article explores how the future is imagined through disability activism. It highlights how UK DPM members, established and newcomers, envisage inclusive and accessible societies and what role disability activism has in realising such visions. To achieve this, conceptualisations of the future are mapped within a framework of three topias (places/worlds): utopia (Freire 1996), retrotopia (Bauman 2017) and heterotopia (Foucault 1998). These topian configurations provide a way to make sense of activist visions for progressing disabled people’s emancipation. The configurations illustrate the rigidity and deterministic ideas of some disabled activist networks to articulate a singular, specified vision for realising an inclusive society. For other activist networks, it is the emergence of alternative futures that open up possible and preferable visions for inclusive social worlds.

These configurations allow for new understandings of young disabled people’s participation within disability activism and social movements. It highlights the restrictions and struggles encountered by young activists in their attempts to influence UK DPM demands and strategies, particularly when their ideas for alternative futures result in tensions and concern among established social movement members. The article argues that the UK DPM currently produces two dominant conceptualisations of the future: a deterministic, radical overhaul of political and economic arrangements (utopia); and a return to ‘purer’ forms of disability activism produced by historical activists and their networks (retrotopia). Young disabled activists who do not align with such conceptualisations are denied opportunities to influence broad activist strategies and are, instead, relegated to opportunities that necessitate a youth perspective. Conceptualisations of the future by young disabled activists can be best understood as the production of counter sites, which generate activities, politics and discourses around notions of inclusion, social justice and accessibility (heterotopia). These produce possible and preferable alternatives to the current ordering of the social world – with disability activism becoming spaces that encourage creativity of new ideas, new practices and new options against existing norms and inaccessible worlds.

The arguments outlined in this article serve two purposes. First, they present new ways of understanding how DPMs articulate and realise their overall purpose in the pursuit of disabled people’s emancipation. The topian framework is employed to understand how DPMs organise, coordinate and respond to differing perspectives for future accessible and inclusive societies. As shown in the remainder of the article, this has severe implications for the inclusion and participation of new, and excluded, members. Second, it serves to prompt existing disabled activists – within and beyond academia – to reflect on how we present our visions for progressing disabled people’s emancipation within our existing activist networks. It is a call for disabled activists and DPMs to consider how spaces are closed and strategic locations lost due to the absence of excluded social movement members.

Following this introduction, the first section provides an overview of the literature on understanding disability activism, as well as the three topian configurations. The second section highlight extracts from the empirical study that illustrate how young disabled activists, and established UK DPM members, conceptualise accessible and inclusive futures. These are framed within the three topian configurations. The final section critiques current UK DPM conceptualisations of the future and the role of disability activism in realising such futures. It critically assesses how young disabled people’s participation is affected by the various conceptualisations, and the implications this has for social movement membership and organisation.

Understanding disability activism and the topia configurations

Disabled people are subjected frequently to marginalisation and oppression. Examples range from restricted participation within the education system (Slee 2008), denied access to social security and support provision (Redman & Fletcher 2022) and encounters of hostility and violence in daily life (Healy 2020). The United Nations has concluded that disabled people in the United Kingdom experience human rights violations (Loft 2020). The social injustices encountered by disabled people continue to be resisted by disabled people’s social movements across the globe (Soldatic & Johnson 2021). UK disability activism has attempted to disentangle the concept of disability from narratives of pity, tragedy and personal responsibility. Disability has become politicised and positioned as a form of social oppression. For UPIAS (1975), disability is the unnecessary exclusions imposed upon people with health conditions, impairments, illnesses and diagnostic labels. They permeate the political, economic, social, cultural, technological and so on, arrangements within society. This interpretation of disability came to be known as the social model of disability, although it should be distinguished from the formalised model developed by Oliver (1990) – the latter remains contested within academic literature (Oliver 2013).

The UPIAS interpretation of disability remains pivotal to UK disability activism (Hasler 1993) and continues to influence strategies, demands and agendas associated with realising disabled people’s emancipation. Disabled activist networks have mobilised to identify the injustices across the material and discursive arrangements of the social world. Their practices seek to disrupt political and economic conditions, progress legislative agendas and policy objectives, embrace disability culture and pride and form alliances with other social movements (Griffiths 2020). More specifically, disability activism has led to self-directed support infrastructure (Mladenov 2015), the development of the United Nations Convention on the Rights of Disabled People (Lawson & Beckett 2020) and the expansion of campaigns to critique notions of normality and ableism (Porkertová 2021). For further reading on ableism, see Wolbring (2008).

Young disabled people’s participation within activism and social movements remains a point of academic enquiry. There are concerns surrounding how social movements facilitate engagement with young activists and ensure they have opportunities to influence social movement organisation (Coe 2020). Attention has also turned to the dominant conceptualisations of youth and how this affects youth participation. Slater (2015) highlights how young people can be aligned with a ‘nearly adult’ status, which undermines their contributions. Often, young disabled activists have their participation confined to matters pertaining only to youth issues or have their perspectives validated by established, older social movement members (Griffiths 2019). There is a troubling lack of research on the accessibility and participation of young disabled people within social movements, and especially with regard to how young disabled people’s ideas can influence the broader visions for socially just, fair and inclusive societies. Attention now turns to understanding the topian configurations outlined in this article.

Utopia

It is important to acknowledge that utopias reflect a perfected society and, thus, occupy no real space within the present (Foucault 1984). They are concerned with the future, one that is possible and desired. Utopias place emphasis on a critique of the present, to understand why a better future is preferred, and what is required now to situate the unreal within the real. Martell (2018) argues for a distinction between critical and constructive utopias; critical utopias identify the disparities within the present alongside the values, ideas and practices that ought to constitute a better, progressive social world. Constructive utopias instigate the move towards an alternative future by presenting specific designs and goals.¹

According to Webb (2017), utopia refers to both a vision to guide social movement activity and the embodied practices employed by activists to realise it. Utopias can remain at the abstract level, located within the imagination, or projected into the current material and discursive arrangements found within the social world. When utopias are – to some extent – realised in the present they are known as ‘working utopias’ (Crossley 1999); often configured to the micro-level, they reflect aspirations that ought to be replicated on a broader, macro-level. This alludes to a prominent tension within utopian literature: utopias can be considered restrictive, totalising and a distraction to immediate social change (Graeber 2013); however, the absence of a utopian vision can lead to fragmented activism (Harvey 2000), the reproduction of existing injustices (Webb, 2017) and diminishing hope for a better future (Lewis 2013).

Utopian literature has moved away from the grand, totalising visions as an endpoint. Prendergast (2011) argues for understanding utopia as the development of open spaces, which offer an exploration of difference, possibility and divergence from the current. Utopia (as a system) has shifted towards utopia (as a process), with continuous and plural insights into how perfected futures can affect individual and social imaginations (Levitas 2007). However, a note of caution exists. For Bauman (2003), there is a scepticism surrounding future models of a perfected world, with individuals now opting to consider utopias within fragmented and individualised contexts. Utopia has become concentrated on the current, private, individual aspects of daily life – utopia is to be pursued by the individual, for the individual.

This article does not reject the significance of utopia as a process, nevertheless, the empirical evidence used to illustrate utopian visions point to the application of a political and economic blueprint to determine UK DPM strategies, agendas and demands. For this reason, Freire’s definition of utopian visions is used in this article. Freire (1996) calls for the use of a blueprint to propel human beings along the path of denouncing oppressive structures, while announcing a better world. Utopian visions require a blueprint to offer clarity, as well as generate and sustain collective action. Freire’s emphasis on the dialectical process for arriving at utopian visions alludes to a collaborative approach, wherein the blueprint is co-designed and amended by integral actors. This aspect is neglected by prominent figures within the UK DPM and will be returned to later in the discussion.

Retrotopia

Retrotopia is conceived by Bauman (2017) as the production of an ideal world located within the past. With conceptualisations of the future becoming individualised, fragmented, bleak and devoid of hope, people have turned to the past as a way to reimagine the future. The past, which comprises various collections of memories and ideas, is open to perpetual reinterpretation and remodelling to provide comfort and stability. Bauman (2017) argues, ‘from investing public hopes of improvement in the uncertain and ever-to-obviously untrustworthy future, to re-reinvesting them in the vaguely remembered past, valued for its assumed stability and so trustworthiness’ (p. 6). Those engaged in retrotopia visions are depicted often as deprived, dissatisfied and lost within the current configurations of the future. They embrace a nostalgic interpretation of the past, which is often romanticised, to find a social world that is manageable, safe and accessible.

Earlier writings by Bauman (2003) provide insight as to why retrotopia can become prominent in shaping ideas for the future. He argues,

[D]etached trust from the future – by detaching the faith in progress from the flow of time. The passage of time is no more measured by the movements from an inferior to a superior status – but by the passing out, the vanishing, of the chances of improvement, which each movement of time entails in an essentially similar quantity and which sink into the unrecoverable past together with that moment. (p. 23)

If the utopian model for a better future is not achievable, then the possibility to return to the past becomes enticing. A fear of the future can lead to a desire to hold on to remnants of the past (Clegg 2018). An interesting aspect of retrotopian visions is in critiquing how social movements and activist networks convey hope through their interpretations of the past.

Typically, literature on retrotopia is employed to provide commentary on the mobilisation of the radical right (Aidnik & Jacobsen 2019); the nostalgic past is illustrated in terms of closed territories, removal of aliens and promises of freedom, security and prosperity. Traditional values, nationalistic sentimentality and jingoism become the bedrock of retrotopia visions. In this article, retrotopia is used differently. It is acknowledged that the UK DPM is positioned primarily on the left of political discourse. Thus, retrotopia refers to nostalgic and historical forms of disability activism, and the specific ideas and values that emanate from earlier members of the UK DPM. Disability politics of the past is viewed – by some – with optimism and provides hope for the social injustices encountered by disabled people within the present. Nostalgic interpretations of historical DPM activity produce a sense of imagined community (Anderson 1991). Solidarity is formed through a longing for a return to previous ways, with historical disability activism perceived as prominent, innovative and producing impact.

Heterotopia

Heterotopia was introduced by Foucault (1984) as the emergence of counter sites that contest, invert and explore the existing ‘order of things’. They exist to disrupt and destabilise current arrangements and patterns of knowledge. Heterotopias accept that alternatives are possible, even preferable, and the social world remains open to being reworked and reorganised. For Johnson (2006), heterotopias exist as worlds within worlds, providing a critique of the outside as well as recognition of what is possible within the existing organisation of the social world. Heterotopias are considered real, localised to specific places and times, but they are not necessarily rooted in emancipatory potential. Foucault (1998) argues that contemporary heterotopian worlds can emerge to control populations and encapsulate deviation. He points to the example of institutionalised care, which is established to mark out and remove individuals deemed non-productive to the functioning of society.

Beckett et al. (2017) acknowledge the different forms heterotopian worlds may take and conclude that heterotopia is best described as sites of counter rationalities. They are spaces with the potential to unsettle the existing social world and have the characteristics that make worlds with emancipatory practices possible. To understand this further, it is important to recognise Foucault’s perspective on resistance, power and freedom. Foucault insists on manoeuvring power away from descriptions of censorship and repression and towards realising power as a productive force (Foucault 1997).

Power, in this sense, becomes relational and the creative potential that power offers present possibilities (or capacities) to resist. This is reflected in Foucault’s (1997) claim that the possibility of change (understood here as resistance) is ever present: ‘if there is no resistance, there would be no power relations […] So resistance comes first, and remains superior to the forces of the process; power relations are obliged to change with the resistance’ (p. 167). Resistance is, chronologically and ontologically, prior to power and is understood as practices that emerge from the body (Revel 2008). This allows resistance to be possible, and bodies/groups can establish resistance practices to subvert power that is imposed. Here, freedom, liberation, power and resistance are not things that are possessed but are practices that can be maintained and destabilised. Foucault’s theorisation of power and resistance has been drawn on to critique disabled people’s pursuit for emancipation (Beckett & Campbell 2015; Lawson & Beckett 2020). Resistance practices can be considered creative and may harness existing mechanisms of power that are employed to oppress and marginalise bodies (Beckett et al. 2017).²

If resistance is to be considered as a creative force, located at the micro-level (Death 2010), and practised by those who seek to disrupt oppressive operations, then heterotopias can be understood as sites that can produce resistance practices and counter rationalities. As Beckett et al. (2017) propose,

heterotopias can be understood as real experiments in thinking and being differently, lived in the present. They provide escape routes from the norm, enlarging the possibilities for self-determination. They are spaces that facilitate and organise resistance practices. In enabling practices that are rule breaking, they have the potential to effect a rupture in the current order of things. (p. 174)

The distinction between utopias and heterotopias is as follows: whereas utopias are not real, heterotopias are. They can be located within the existing material and discursive arrangements that produce the social world. Unlike utopias, which provide guiding principles for how society ought to be organised, heterotopias are sites of experimental play. They provoke thought and commentary on the existing political, economic, social, cultural and so on, arrangements in society. Empirical examples of heterotopias include Gaffric and Heurtebise’s (2016) study of Taiwanese social movements, Edwards and Bulkeley’s (2018) investigation of climate change projects and Siegrist and Thörn’s (2020) exploration of cultural and political art centres in Slovenia. In this article, aspects of contemporary disability activism enacted by young disabled activists are understood as heterotopian worlds.

The future of disability activism

Participants within the study comprise young disabled activists and established disabled members of the UK DPM. The study defined youth as an individual aged 18–30 years. Age was recorded for those in the youth category only. For the group consisting of established members, they were required to consider themselves – or be considered by others (e.g. the Disability News Service Influential List) – as an influential/established member of the UK DPM. Semi-structured interviews were conducted with 16 individuals, and topics included conceptualisation of disability and disability politics, accessing DPM membership, DPM organisation, and considerations for the future of UK disability activism. All participants, throughout the interviews, considered how the future of disabled people’s social position is articulated within disability activism and social movements. It is possible to chart participant perspectives across the three topias. This section presents direct quotes from the interviews. The subsequent section discusses the alignment of these quotes within the three topian configurations and explores their significance to the future of UK disability activism and social movements.

Utopia

Deterministic visions for establishing accessible and inclusive societies arose in several interviews with established UK DPM members. There was clear frustration in how specified visions filtered through to actions, demands and strategies within DPM organisation. This produced situations where members were told to follow specific ideas and principles; otherwise, they encountered exclusion and marginalisation within the DPM. Robert, in discussion about how specific future visions were conveyed to DPM members, recounts the division and hostility that often emerged:

It is a real issue and it comes back to that divisive nature of the movement; we know the truth you don’t, fuck off, you traitors. That’s as true now as it ever was, probably more so and it’s wrong. (Robert, established member, white male)

Here, Robert highlights how the future is aligned with the premise of truth – there remains no alternative other than the pursuit identified and outlined by existing, influential members. Any attempt at deviation, or collaboration that introduces possible and preferable alternatives, is considered dangerous. Of particular note is the use of ‘traitors’, wherein those who do not agree with the specified future are deemed betrayers of the emancipatory cause. Robert calls for reflection within the existing membership and to acknowledge how the utopian approach undermines future generation’s activities and influence within the DPM:

One of the ways to do that [challenge deterministic visions] is by knowing more about what we did and how we fucked over the future generation, through self-interest, glory and ego. But there is another thing that you need to add, a lot of the people of significance are there because we were first not because we are any good.

Those who occupied prominent positions within disability activism were presented with the opportunity to outline a tailored vision for justice and emancipation. From Robert’s perspective, the premise of a utopian vision ruins future engagement with disability activism and politics. It appears to undermine the effectiveness and sustainability of the DPM. This is because the utopian vision is considered entangled with self-gain and the personal pursuit of those who emerged first. Acceptance of their utopian vision is predicated on these being the first politicised voices to critique disability and offer an interpretation rooted in oppression and social justice. These historical voices have shaped the narratives, ideas and demands within disability activism. However, as articulated by Christopher, struggles remain over challenging the dominant, deterministic vision:

I know certainly the radical purists within the movement would disagree with me entirely and there would be no place other than a kind of Marxist, socialist approach to questioning the cannibalistic notions of why we’ve ended up in the way that we are. And they question lots of truth, and intellectual arguments, but it needs to be taken in a wider perspective I think, international perspective and not just in a Marxist analysis of what the situation is […] our worst enemies are within our own organisations. At times when we should be uniting, unifying, and trying to move things forward, our differences encroach. (Christopher, established member, white male)

Christopher highlights the tensions between DPM members, who appear to undermine their own strategies and tactics by becoming absorbed in challenging each other’s perspectives. Collaboration, and the articulation of ideas to establish inclusive social worlds, remains non-conducive. The emphasis is placed on accepting a specific truth (or vision), which appears to align with socialist and Marxist interpretations. Forms of collaboration are permitted only to serve in strengthening the specific vision, and this comes at the cost of introducing broader perspectives and ideas to achieve emancipation. Christopher calls for attempts to unite and unify the factions within the DPM but, when speaking with young disabled activists, there remains reluctance in accepting new ideas, influence and potential leadership. Rose states,

In the context of being a member of the movement, we’re forced to go the ways of other people’s agendas. It’s not a question of wanting to go there or not, we are compelled to go there. (Rose, young member, white female, early thirties)

The feeling of being forced illustrates the continuous conflicts and restrictions placed upon young disabled people when engaging in the DPM. Young disabled activists are exposed to authoritarian members, often established and influential, who dictate the terms of their engagement. There is a lack of accessible and safe spaces for young disabled people to articulate ideas and visions for producing, and sustaining, inclusive social worlds. They are compelled to follow what has already been established, otherwise they risk occupying ‘enemy’ positions and becoming exposed to hostility. In another interview, with Richard, it emerged that there is a reluctance to accept young disabled people as influential and valued members of the DPM:

I think possibly the unwillingness to accept that the baton of disability rights needs to be passed on. (Richard, young member, white non-binary, mid-twenties)

Richard’s interview explored the underlying tension that remains when considering young disabled people’s emergence within disability activism. Richard spoke of the conflicts that surround young disabled people’s interpretation and ideas of disability, social justice, inclusion and the necessary tactics to realise emancipation. It was apparent that existing membership, particularly those who occupy influential and soft leadership positions within the DPM, is reluctant to incorporate youth perspectives. This manifested into a broader resistance of denying young disabled people the opportunity to have prominent, influential roles within activist networks and social movement organisations.

Retrotopia

Some activists highlighted how DPM conceptualisations of the future were synonymous with historical forms of disability politics. The vision for an inclusive future required a return to historical ideas and practices. The retrotopian vision called for a reorientation of DPM ideas and the distancing from contemporary and emerging pursuits. Current pursuits were deemed problematic, ineffective and naïve (particularly when offered by young members). The answers to the problems of the present necessitated a focus on the past. Paula assessed the problems with how the DPM conceptualises the future and drew attention to how the retrotopian vision remains prevalent:

It is [DPM] too inward looking, not prepared to make movements towards bringing young people in to invest in the future. Hanging on to the past. Perhaps getting stuck because our battles, the old battles were very different battles than our young people now. And so, we think we know what the battle is, because we were there at the coal face if you like. And maybe we’re a bit wounded. And so, if we’re still a bit bruised from battle, we’re not ready to hear that battle’s dead and gone, love, we’ve moved on, move with us. And I think it’s really important that we do go, ok, we’ve won that battle, it’s another battle now, it’s a different battle. (Paula, established member, white female)

The references to battles signifies a continuous set of conflicts, wherein disabled activists are pitched against the political, economic, social and cultural arrangements that produce unnecessary restrictions upon disabled people. There is disregard for potential new avenues of resistance practices, as well as assessments of contemporary social issues perpetuating disabled people’s marginalisation. Paula considers DPM members are preoccupied with the historical conflicts and narratives that were pertinent to disability activism in previous years. This has led to established members placing emphasis on battles of the past, as an answer to the injustices of the present and future. The continued focus on the past is, perhaps, unsurprising given that disabled people continue to be oppressed and marginalised. The ‘wounds’, which remain unhealed, lead established members to remain committed to issues that are unresolved. However, this comes at a cost. DPM newcomers see little justification in returning to historical worlds for emancipation. For Janet, the retrotopian world and battles ignore diversity:

It’s not that the movement needs to change. The faces need to change. There’s people who are in the movement who are just so not in tune anymore. You cannot have a movement that is so not diverse. The movement hides away from stuff whats difficult to deal with. It has not moved on (sigh) in terms of some of the issues that it speaks about, and some of the issues that it speaks about may not be of interest to younger disabled people. (Janet, established member, black female)

The pursuit for retrotopia dismisses the intersectional aspects within disabled people’s lives. Janet points to a DPM that has ignored the unique experiences of marginalisation that emerge through the intersecting of characteristics. This ignorance has led to a vision for an inclusive world that does not incorporate the ideas, activities and priorities of a diverse membership. The danger is that young disabled people, and those from diverse backgrounds, will find the DPM irrelevant. Presenting the past as the answer to the future risks minimising and ignoring the complexity of the contemporary social world. In another interview, Hilary discusses the DPM’s preoccupation with certain individuals and their ideas for emancipation:

It creates layers of tension because of the fact that certain things are so wedded with certain individuals. You are expected to follow their vision, even though their ideas focus on things that are outdated to young people. (Hilary, young member, white female, early thirties)

Young disabled activists often described established figures as having outdated views, which led to feelings of exclusion within the DPM. Kate, for example, spoke of members closing down narratives and resisting any challenge to their ideas:

If you come with perceived very little experience and knowledge and then try to alter things, people clamp down on that. They push against it because they don’t want their little world to be altered. They have their old ways of doing things and think everything has already been worked out and it is just about pushing forward now. Not getting side-tracked or distracted. (Kate, young member, white female, early thirties)

In all cases, young disabled activists found themselves at odds with established members. They were critical of those who prioritised historical accounts for realising disabled people’s emancipation. Young disabled activists were frustrated by the negation of their ideas, at the expense of returning to historical activities and narratives to make sense of disabled people’s marginalisation – as well as the routes to inclusion. They were subjugated by experienced activists who appeared to define the terms of engagement, and who had already determined DPM agendas and demands. Young disabled activists wanted to open up spaces for creativity, debate and experimental practice. All of the interviews with young disabled activists referenced a desire for producing new visions for improving disabled people’s social position. Frustratingly, current DPM organisation did not permit this. Young disabled people felt trapped in supporting or capitulating to the deterministic (utopian) or historical (retrotopian) vision proposed by dominant DPM members.

Heterotopia

There was a desire for the DPM to produce safe and accessible spaces to generate new activities, politics and discourses surrounding disability and inclusion. Every young disabled activist interviewed acknowledged this desire. Hilary spoke about young activist’s wanting to challenge existing movement ideas and strategies; however, they would often encounter resistance and challenges from established members. Young disabled activists had expectations imposed upon them, by the existing membership, to support existing strategies and demands:

There is an expectation that those that are entrusted with power and responsibility and whatever else within ‘the movement’, there is an expectation that we will continue in the same vein as what has gone before us. However, my experience is that every new member challenges the way things are done and therefore what is considered revolutionary and what is considered progressive, and what is considered good practice and acceptable is a continually evolving thing, rather than this is how we do things. The strength to withstand the challenging criticism is where new members either conform, create or crash and burn. (Hilary, young member, white female, early thirties)

Hilary acknowledges that as newcomers become more prominent within the DPM, they are expected to refuse attempts to generate new ideas, discourses and activities. Instead, it is anticipated they will follow the current order of things. There will be no deviation or opening of spaces to permit critique, debate and creativity – unless to progress the established visions. Nevertheless, Hilary highlights how newcomers want to challenge existing norms and expectations. They want to open spaces and sites that introduce alternative worlds. Young activists participate in disability activism in the hope they can produce possible and preferable futures, which are distinctly different to what the DPM currently offers. Hilary points to young activists experiencing criticism in their attempt to challenge existing plans. Here, resistance practices become pivotal. Young disabled activists ‘crash and burn’ if they do not resist the expectations to conform or accept criticism for their intentions and actions. Hilary, subsequently, outlines a major struggle within the DPM:

One of the things that the disability movement is struggling with at the moment, is how to create space for new ideas and new people and new generations in a context where the people that founded a lot of these organisations and lead the movement, are still alive and invested in what’s happening. Most other movements have existed long enough that the founding generation are literally dead and buried, which means that there is less of a challenge when people want to do something different or challenge the principles that underlie something. Those kind of challenges could be seen as a direct challenge to an individual, rather than a challenge to a movement.

Young disabled people’s counter sites for new ideas are conveyed as direct challenges to the utopia and retrotopia visions. Established members, who have influence and authority, consider these counter sites (heterotopias) dangerous. Such members distance themselves from heterotopia, and they refute attempts to participate in the designing of these worlds. Heterotopias are incompatible with their visions; thus, they are deemed a threat. Richard noted these tensions and spoke about the emancipatory potential of supporting young disabled people to generate their own activities and visions:

You instantly see the hierarchy [of established members] anyway because they’re there with that idea that they are better than other disabled campaigners, or other disabled people, but imagine if you had a disabled people’s movement that actually encouraged involvement from every [young] person that defined themselves as disabled. That would be so huge and yet so many people think that they are powerless, in wanting to create the change that they want. (Richard, young member, white non-binary, mid-twenties)

Richard spoke of the internalised oppression that young disabled people encounter when thinking about their participation within activism and social movements. There is a sense of being ‘powerless’ when instigating change or promoting their own ideas and interpretations of the social world. Richard calls for a unifying approach, wherein the DPM nurtures ideas, facilitates participation and encourages the development of alternative visions. This would, in Richard’s words, create the change they want – particularly at the micro-level, within their own communities and throughout the material and discursive arrangements that constitute society. The heterotopia visions provide an array of ideas and practices to produce accessible and inclusive future societies. It is possible that the heterotopia visions are considered as in competition with the dominant visions outlined through DPM organisation, not just as a challenge or attempt to undermine existing visions. They compete to offer an alternative way of making sense of the world. More accessible and safe spaces will emerge to participate in the production of heterotopian visions, providing that they become prevalent and a continuous part of DPM activity. Young disabled activists, such as Margaret, argue that such spaces would combine historical and contemporary themes associated with disabled people’s emancipation:

You inherit things that are already there but any new member is gonna’ have new ideas and new opinions and new ways of looking at things. Nothing really stays the same so you can never really just inherit something without creating something as well. I think that’s kind of one of the beauties of our times that this wealth of information that has happened before will always be available to us but we know need to increasingly and continuously be encouraged to come up with ideas of our own. (Margaret, young member, white female, early twenties)

Ensuring young disabled people have opportunities to create counter sites is a difficult task. Realising the comments by Richard, Margaret, Hilary and others will require established members and influential networks to facilitate participation. Paula hopes this is acknowledged by the DPM:

We’re all borrowing from each other. It’s about acknowledging the world that’s gone before us. It’s about using what works well for us, accepting that and letting the rest that hasn’t worked fall away, sort the wheat from the chaff and move on. I suppose it’s about developing and changing and evolving. [Going forward] we’re not gonna be there. I think we’re arrogant to assume we’ve created something that is so spectacularly successful, well thought through and a model of good practice, that we hand it down untarnished and go ‘don’t change this, these are the rules, ah, ah, now play careful. You wanna come to the party? You have to do it our way. You want to celebrate our way, you sit at the table, you play nice’. That ain’t gonna work. (Paula, established member, white female)

Conceptualising disability activism through topias

The following discussion considers how the outlined topia configurations are operationalised within disability activism, and the implications and opportunities this produces for realising disabled people’s emancipation. It is acknowledged that all three topian approaches offer transformative spaces, which are likely to instigate social change and affect disabled people’s social position. This discussion is not proposing a competitive prioritisation, wherein the best topia is identified to progress disabled people’s politicised causes. It should not be read as an attempt to identify a ‘Goldilocks zone’ – a habitable space for disability politics to flourish. Instead, this discussion explores the different, and distinct, attributes associated with each topia and the possibilities they offer for disability activism.

Utopia

There is a process of struggle in determining the utopian vision (Streck 2008). It requires articulation of ideas, goals and pathways that illustrate commitment to a cause. Social movement members are required to demonstrate allegiance to the vision and accept that it remains the better option than what is experienced presently. The utopian vision must also be acknowledged as remaining out of reach within the contemporary social world. Activities, and dialogues, are instigated to propel members along the path towards a utopian ideal. Forms of deviation, hesitation, or embodied reluctance are considered dangerous. They risk disrupting strategies and demands. Harvey (2000) points to the absence of a utopian vision as a ‘habit of getting lost in the romanticism of endlessly open projects’ (p. 174). The deterministic visions offered by prominent and established DPM members serve as a way to mitigate the expansion of broader, open projects.

In this context, disability activism is geared towards instructive visions. It presents a vision that is substantive, with clarity, and points to a better world – one that remains possible and has the potential to be realised (Roberts & Freeman-Moir 2013). This is identified in the accounts above by disabled activists. They acknowledge the deterministic vision as a way of organising social movement members and organising short- and long-term strategic goals. The problem, however, is that the radical imaginations of all members are not tolerated. The vision that emerges is one closely aligned to certain influential, established DPM activists. The utopian vision is presented as a ‘truth’; it produces an alternative space of possibility but only one space. Coté et al. (2007) calls for the utopian vision to demonstrate the existence and possibility of radicalness beyond the edges of the existing social world. The difficulty is that some disabled activists, primarily newcomers and those considered young, have their radical perspectives restricted. They are forced to accept a model that was produced prior to their engagement in disability activism.

It is possible that the DPM is reflecting McKenna’s (2001) articulation of end-state utopian models – the deterministic vision offered is the final point on the journey. The vision serves as an architectural blueprint; with activism understood as the tools required to build towards the utopia (Levitas 2013). This would explain how young disabled activists experience an unwillingness, by established members, to accommodate their visions. The blueprint is considered complete, comprehensive, with accurate details that articulate the conditions required for emancipation. Commentary deemed disruptive to the blueprint undermines its credibility and slows the path towards realisation. Activities deemed disruptive are believed to exacerbate the existing injustices experienced by disabled people. Alternative ideas to the utopian vision are positioned as unnecessary. They reflect a naïveté among newcomers to disability politics. The production of counter sites to explore social change, and experiment with the ordering of the social world, is considered a hindrance. Established members have presented their vision, believing it to envisage disabled people’s emancipation.

According to Freire (1996), utopian visions require a critique of the historical and contemporary social conditions that perpetuate the oppressive reality. A transformative process, coupled with reflective and dialogical activities, to produce the arrangements required to challenge social injustices, follows this. Roberts (2015) suggests the utopian response outlined by Freire is a manifestation of hope. Hope flourishes when imaginations are celebrated, creativity is embraced, and the strive for a better world is maintained. The importance of utopia, as articulated by Freire, is not dismissed.

Freire (1996) calls for an exploratory approach to building utopian visions, with a rejection of dogmatism, and an emphasis placed on dialectical inquiry to address social and political problems. It appears that this is not embraced with DPM activity. The pursuit for imagining disabled people’s emancipation is not a collaborative exercise. Young activists do not experience the spaces, nor the positions, to explore new ideas, and to offer critique on existing plans and strategies. This is summarised in the points made by Rose, who talks about young activists feeling compelled to follow existing member’s agendas. There is a distinct lack of tolerance within DPM membership, which undermines any attempts to open dialogue and reflect upon the ideas of newcomers to disability activism. Tolerance – in the utopian context – is not to be understood as an acceptance of all perspectives. Rather, it is to acknowledge and respect that everybody will have different ideas, and different dreams of what is possible and preferable (Freire & Faundez 1989). The failure to accept, and encourage, new forms of reflection, questions and ideas means young disabled activists continue to experience hostility and restrictions in their DPM participation.

Retrotopia

Retrotopia conveys a longing for the past as the future (Bauman 2017). It is applied primarily to explain the increased support for right-wing populist movements and the prevalence of xenophobic and jingoistic perspectives in contemporary, Anglo-American societies. Here, it is employed differently. It illustrates fixation, by contingents within the DPM membership, on historical disability activism and political theory and praxis. The return to earlier DPM agendas, strategies, demands and ideas is considered a better – or purer – form of activism and social movement organisation. For example, Paula (in the interviews) discusses members ‘hanging on to the past’ and ‘getting stuck because the old battles were very different battles’ to now.

Katz and Mair (2018) consider the retrotopic focus as an attempt to nurture inspiration for an idealised period of time. These periods are often romanticised, and appear dreamlike, in their articulation between actors. They privilege certain accounts and narratives by influential DPM members. Their stories and ideas are rooted in a nostalgic form of disability activism, which is used to influence newcomers and those who experience restricted participation. Nostalgia is key to embedding a retrotopian vision. Bauman (2017) aligns nostalgia with a cultural politics of emotion, which is employed to strategically distinguish between different groups. The emotive impulse to return to historical, and traditional, forms of disability activism marks out a group that is at odds with those engaged in the contemporary struggles facing disabled people. The historical struggles are unresolved, which means such ‘battles’ must continue. Established members relegate contemporary struggles and discussions about an unknown future. Instead, they are committed to an imagined past that appears better organised and one that engages critically with disabled people’s injustices. The retrotopian vision is portrayed as an imperative, a vision that is non-negotiable. It produces a sense of hope and longing for something that is tangible. The battles of the past, as well as the historical activist tactics, have already commenced. Previous and current DPM members have experienced these activities and discourses. They appear real as opposed to the ‘wasted’ resources and time that would be spent on producing counter sites and alternative futures. This nostalgia establishes an imagined community of the past (Anderson 1991). Disabled activists of previous years are deemed more effective and efficient compared with newcomers and contemporary, younger members. The sentiment attached to these historical figures means they are positioned as stable and trustworthy. According to Bauman (2017), such sentiments lead people to invest their hopes for improvement away from uncertain and untrustworthy futures on offer.

Young disabled activists noted the tensions that emerge because certain visions are ‘wedded’ to certain individuals. Expectations are placed upon young activists to follow the vision articulated by key, influential DPM members. These expectations, alongside the emergence of retrotopia, illustrate how the activist space has become colonised by historical visions for disabled people’s inclusion. Bauman (2000) highlights the colonisation of the public space as a means to eradicate solidarity and the capacity to identify common goals. Spaces for negotiation, creativity and experimental forms of disability activism are replaced with ignorance towards young activist’s contributions. The closing of new alternatives is an attempt at securing, and sustaining, the existing work of established disabled activists.

It is not suggested that established disabled activists are indifferent towards inequalities experienced by the disabled people’s community – particularly those that are raised by young activists and newcomers. Retrotopian visions form as a consequence of the fragmentations within the social world and the anxieties that are reproduced as individuals experience daily injustices and threats to survival (Bauman 2017). Disabled people struggle to access sufficient support to participate in their communities (Mitchell 2015). Opportunities to engage in activism and social movement are restricted, which means those who do participate are pressured to progress emancipatory demands and realise substantial social change. Kate (during the interviews) alludes to established members outlining existing plans and expecting young activists to ignore pursuits for alternative visions. Existing members are under pressure to maintain the current course of action.

This comes at a cost, as past disability activism has failed to incorporate an intersectional critique when understanding disabled people’s social position (Griffiths 2019). Retrotopian visions, within disability activism, have little to offer with regard to understanding the injustices and oppressions that emerge at the intersecting of various characteristics. The DPM risks becoming irrelevant and detached from a diverse disabled people’s community if it is to embrace retrotopia. The retrotopian vision ignores the complexity of the contemporary social world and promises safety by prompting followers to dismiss the importance of diversity and variance within human existence. This means, for disability activism, the vision for an inclusive world ignores how disability is experienced from different backgrounds. It is simplistic and deprives the voices of those who are excluded often when developing DPM strategies and agendas. It means the vision offered will benefit, primarily, those who occupy positions of influence and authority within disability activism.

Heterotopia

Heterotopias refer to places that are considered different to the current ordering of the social world. According to Johnson (2013), they are a manifestation of cultural, institutional and discursive spaces that can disrupt, contradict and transform ideas and activities within and beyond the heterotopian sites. Most notably, Beckett et al. (2017) have employed the concept of heterotopia within social movement studies. They provide a heuristic typology for the different spaces that can facilitate resistance and experimentation to respond to social injustices. In the context of disability activism, the heterotopian sites facilitate the emergence of new ideas, concepts, narratives, strategies, demands and priorities to resist disabled people’s marginalisation and progress emancipation. They form a place within a place, a space for understanding and practising disability politics that is situated within existing activist networks and social movement organisation (DPM).

Foucault (1998) outlines heterotopia through the example of a mirror, a space that feels unreal and real simultaneously. The mirror bridges the unreal and real spaces. Heterotopias facilitate the ability to be different and the same, real and unreal (Johnson 2006). The agendas and concepts outlined by established DPM members are presented as the real strategies for improving disabled people’s social position. These dominant ideas and activities, which continue to have legacy within disability activism, present the current ways of thinking about and engaging in disability politics and activism. Alternatively, young people, newcomers and excluded disabled activists attempt to build counter sites (heterotopias).

These counter sites serve two purposes. First, they provide a space to resist and disrupt the restrictions placed upon disabled people in the existing social world. They are spaces to counter the rationalities that reproduce disabled people’s experiences of exclusion and discrimination. The heterotopias comprise material and discursive aspects that activists equip to determine how resistance is possible and for what purpose. They should be considered sites of experimentation (Baillie et al. 2012), which facilitate new and emerging forms of disability activism. These forms often go unnoticed or dismissed by established DPM members. It is when they are considered to destabilise dominant activist strategies that tensions rise and established members attempt to confine young disabled people’s contributions.

Second, these counter sites illustrate how young disabled people are situated within the formations of youth, disability activism and the entanglement between the two. Young disabled activists are subjected to authority, reduced participation within activist networks, and are limited to engaging on matters that require a youth focus (Griffiths 2019). Often, they are positioned as passive and awaiting guidance from established social movement members. The heterotopia illustrates the relations that reflect, sustain and reproduce young disabled people’s position within disability activism. However, Saldanha (2008) understands heterotopia as a way to oppose existing conditions, as well as distort and invert relations and arrangements in the social world. In the context of disability activism, the heterotopia presents opportunities to reconsider young disabled people’s participation in activism and social movements. It introduces the possibility of difference, a way to reorganise disability activism to facilitate and embrace ideas, practices and contributions by marginalised activists.

Those who took part in the interviews outlined the importance of encouraging young disabled people to become prominent and influential DPM members. Richard highlighted the importance of identifying young disabled people to participate in disability activism, and Margaret discussed young members producing their own ideas for emancipation and inclusion. These ideas intersect with existing, established, strategies and demands but they are open to creative experimentation by newcomers and marginalised social movement members. Johnson (2006) argues that heterotopias contain the possibility of resistance and liberation, but this is not to be assumed. Heterotopias provide an initial point to imagine and invent new ways of organising the existing world (Genocchio 1995). Disability activism can utilise heterotopia as a way to generate new forms of resistance practices. It can provide spaces to explore the dangers and implications of current and emerging social movement strategies. Here, heterotopia unsettles the existing positions occupied by young disabled people. It shows that the current ‘order of things’ traps marginalised members to accept the ideas and visions produced by established and historical activists. Simultaneously, it shows young disabled activists desiring self-determination, influence and opportunities to produce new ways of thinking about disability, accessibility, inclusion and emancipation.

Conclusion

This article explores how the future is conceptualised within the UK DPM. To achieve this, a framework of three topias are employed to make sense of the different perspectives: utopia, retrotopia and heterotopia. These configurations illustrate how disabled activists position themselves in pursuing the removal of unnecessary restrictions imposed upon the disabled people’s community, as well as realising emancipation. It is argued that the UK DPM engages with two deterministic visions to guide social movement agendas, strategies and activities. First, a utopian vision is identified. This is conveyed as the only possibility for realising emancipation. It is presented as a ‘truth’, with alternatives considered disruptive and flawed. DPM members are valued if they embrace the utopian vision and embrace it as part of their activism. Second, a retrotopian vision is identified. This demonstrates a focus on historical mobilisations of disability activism. The historical ideas, activities and priorities are considered a better form of activism and social movement organisation. Contemporary disability activism is expected to find the answers to present social issues by returning to the past. These two topias restrict young disabled people’s contributions and denies them opportunities to produce new, creative and experimental forms of disability activism. Young disabled activist’s conceptualise the future as the production of counter sites – heterotopias. These sites have the potential to disrupt, invert and transform current understanding of disability. They produce new openings to resist the social injustices encountered by the disabled people’s community. They identify new ways of ordering the social world that will improve disabled people’s participation and inclusion.

The three topia configurations illustrate how DPMs mobilise and coordinate. It shows how social movement members respond to differing perspectives on producing accessible and inclusive social worlds. This is significant for understanding how disabled people, particularly young disabled people, participate in activism and social movements. Furthermore, it opens new avenues for the exploration of how social movements conceptualise the future and the opportunities and implications this has for participating in activism.

Footnotes

Notes

Author biography

Miro Griffiths is a Disability Studies scholar, based in the School of Sociology and Social Policy, at the University of Leeds. His research interests primarily explore the resistance practices employed by disabled people to realise accessible and inclusive societies. Miro is an adviser on disability policy to government bodies, civil society organisations, and human rights organisations across Europe.

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