Introduction
Independent living remains an integral concept within activism, politics, policy-making, and academic discourse. The concept has facilitated the pursuit of what constitutes sufficient and sustainable support, and emphasises the importance of disabled people participating in accessible and inclusive communities. This has led to disrupting traditional notions of care ( Morris, 2004), contesting segregative forms of support provision ( Mladenov, 2020), and prioritising opportunities for disabled people to engage, have value, and belong in society ( Brennan et al., 2017). Interrogating independent living, disability activism, and the resistance practices employed by disabled people to challenge injustice remain prominent within Disability Studies; however, entangling concepts of independent living and resistance is necessary to realise disabled people’s emancipation.
This article, conceptually situated at the intersection of Disability Studies and Social Movement Studies, explores some of the most prominent claims of European disabled people’s social movements to progress independent living. The article reconceptualises these claims to be understood as forms of resistance employed – by disabled activists – to destabilise existing injustices and produce alternative possibilities for (disabled) bodies to exist and thrive throughout the social world. It is argued that the independent living concept should be understood as an oppositional device ( Holmes, 2007; Beckett & Campbell, 2015). The ideas of independent living are configured as operations of this device, which disabled activists employ to produce contemporary demands for realising inclusion, produce shared political values for progressing disabled people’s choice and control, and resist the arrangements that entrench exclusions and restrictions across daily life. Independent living, as an oppositional device, critiques the material and discursive aspects that reproduce disabled people’s marginalisation and oppression.
Operationalising these ideas requires disabled people’s social movements engaged in progressing independent living – often referred to as the Independent Living Movement (ILM) ( Willig Levy, 1989; Hayashi & Okuhira, 2008; Elder-Woodward, 2016) – to produce heterotopias ( Foucault, 1984). Heterotopias, here, are spaces formed to destabilise the assumed truths and knowledge surrounding disabled people’s support requirements, and experiment with what independent living can become and do. For example, ILMs can produce alternative understandings of the key principles that underpin independent living, such as: support, assistance, choice, control, and participation; or contest professional influence and authority over disabled people’s lives. To substantiate the arguments made, the article draws upon empirical data from a study exploring young disabled people’s views and experiences of disability activism across Europe.
The originality and significance of these arguments is in understanding independent living as ideas that operate to disrupt and resist the ordering of knowledge about care, support, and assistance. It disrupts a deficit model of disabled people’s autonomy. Additionally, it introduces divergence to the present through the heterotopian spaces formed by ILMs. Independent living is understood as patterns of resistance-based practices that affirm an alternative to existing support arrangements. It reconfigures assistance through the possibilities of inclusive welfare policy, and broader measures that protect disabled people’s fundamental freedoms. This brings into focus a reimagining of what support can do and what disabled people can become when accessing sufficient, sustained, and user-led support that is provided to facilitate participation in accessible societies. Understanding independent living through this approach will draw attention to the claims and demands of disabled activists, and their social movements, for realising a fair, just, and accessible world.
The next section provides an account of the literature on conceptualising and understanding independent living, disability activism, oppositional devices, and heterotopias. Then an overview is provided of the methods employed within the empirical study. The following section maps independent living across Foucault’s (1988) four ‘technologies’ (production, sign systems, power, and the self), which illustrates how independent living ideas operate. Finally I discuss the analytical potential for understanding independent living as an oppositional device, and the significance of ILMs in forming heterotopias to produce, experiment, and realise what independent living can do.
Conceptual Clarity: Disability, Independent Living, Oppositional Devices, and Heterotopias
Disabled people’s collective struggle for inclusion is testament to the persistent injustices and unnecessary restrictions imposed upon communities across the globe. Sépulchre (2022) points to disabled people’s experiences of precariousness and vulnerability when navigating infringements and pursuing legislative protections. Slee (2018) highlights educational arrangements that prioritise exclusion and segregation, and Redman and Fletcher (2022) show how residual forms of social security are detrimental to disabled people’s life chances. Globally, the United Nations remains concerned over the lack of support and protection measures for disabled people encountering existential threats, such as global warming, poverty, and the persecution of indigenous peoples ( Quinn, 2021).
Disability Studies, activism, and politics have sought to interrogate disabled people’s position across political, economic, cultural, social, and technological arrangements. This has led to contesting the assumptions and narratives that disabled people experience injustice because of bodily function and cognitive processing ( Oliver, 1990). Rather, disability is understood as the unnecessary restrictions imposed upon people with impairments, health conditions, and diagnostic labels. Disability activism has sought to identify common claims, which will facilitate solidarity among social movement members and produce collective responses to the encountered injustices. The social model of disability ( UPIAS, 1975) is often regarded as a central tenet within disability politics, dominating UK disability activism and contingents within European disability politics ( Griffiths, 2022a). It is argued that the human rights model of disability ( Degener & Gómez-Carrillo de Castro, 2022) and the social model complement each other by identifying the radical and incremental actions necessary for realising accessible and inclusive societies ( Lawson & Beckett, 2020). Additionally, the concept of ‘ableism’ ( Wolbring, 2008) has been utilised within disability activism to engage critically with the values and practices that prioritise certain social groups and arrangements over others. All of these concepts coalesce to form the various agendas, strategies, and demands within disabled people’s social movements. These models, and concepts, can be understood as oppositional devices working within an assemblage to ascertain disabled people’s position across societies.
Independent living, in addition to those referenced above, maintains considerable traction within disability activism and politics. The concept is rooted in disabled people’s pursuit of self-determination, choice, and control over the technologies of support necessary to live a life of one’s choosing. Its history reflects, across the globe, disabled activists’ anger with the absence of sufficient, sustainable, and personalised support to live and participate in society ( Ratzka, 1992; Heumann & Joiner, 2020). The concept has a transnational appeal and has produced coalitions committed to facilitating disabled people’s participation in their chosen communities, with sufficient and sustainable support to realise personalised goals and aspirations ( Angelova-Mladenova, 2019). It is instrumental across a range of fields: the production of toolkits designed to facilitate disabled people’s understanding of choice and control ( Ratzka, 1992); the emergence of disabled people’s organisations who campaign for inclusive societies, promote self-directed support, and provide services to realise personalised assistance ( Bolling & Farren, 2017); the criticising of existing support provision and evidencing the detrimental effect of segregative and institutionalised forms of paternalistic ‘care’ ( Mladenov & Petri, 2019); the production of policy interventions designed to expand disabled people’s access to, and management of, personalised support ( Angelova-Mladenova & Brennan, 2022); and the establishment of Article 19 within the United Nations Convention on the Rights of Persons with Disabilities, which provides principles for Member States to protect disabled people’s fundamental freedoms.
Concerns have been raised over the alleged corruption of the independent living concept, notably by Oliver (2017), who argues it has become hijacked and manipulated by neoliberal forces. Dominant neoliberal traits, deemed necessary to participate within society, leads disabled people to embrace self-sufficiency and understand competition as essential to survive and flourish within contemporary social organisation ( Titchkosky, 2003). This is reflected in Fritsch’s (2015) claim that the privatisation of care services has resulted in disabled people absorbing responsibilities to manage their own needs. It is also evident in the concerns of Clements (2008) and Slasberg and Beresford (2020), who consider policy developments to have expanded privatisation, commodified support, and increased expectations that the disabled person is responsible for commissioning provision. It is reasonable to argue that the notion of care, within a neoliberal context, can lead to residual forms of support, security, and assistance from the state ( Wrenn & Waller, 2017). These examples of individualism and responsibility can be situated within a broader critique of ethopolitics – the politics of life itself and how it should be lived ( Rose, 1999). This refers to the beliefs, traits, sentiments, and values used to organise and understand oneself. Rose (2001: 18) suggests: ‘if discipline individualises and normalises, and biopower collectivises and socialises, ethopolitics concerns itself with the self-techniques by which human beings should judge themselves and act upon themselves to make themselves better than they are’.
It is not disputed that activist claims and strategies can become corrupted, or influenced, by contemporary political and economic objectives. Independent living can be affected by forces who do not prioritise disabled people’s emancipation or prioritise it through the expansion of neoliberal ideals. However, the premise of support – as articulated by ILMs – is entrenched within disabled people’s pursuit for self-determination, and the realisation of accessible and inclusive societies. Such pursuits should not be negated because of how policy interventions have aligned care and support with existing welfare regime characteristics ( Mladenov, 2012). The arguments outlined here propose that independent living is not lost eternally to the influences of neoliberalism. There remains the potential to employ it as an oppositional device, which will facilitate critique and reimagining of support arrangements, as well as the realisation that accessible and inclusive societies require sufficient, sustainable, and self-directed support.
Oppositional Devices and Heterotopias
To understand oppositional devices and heterotopias, it is necessary to start with understanding power, resistance, and technologies. Foucault’s (1988) exploration of the relations between knowledge, truth, and power has led to an analysis of how humans understand the self. At the centre of knowledge is an understanding of the self that emerges within social and cultural practices – for example: medicine, education, legislation, and economics. There are four major technologies, which serve to maintain specific truths, knowledge orders, and produce reason and rationality to legitimise existing arrangements: technologies of production; technologies of sign systems; technologies of power; and technologies of the self. As Foucault (1988: 18) proposes, ‘Each [technology] implies certain modes of training and modification of individuals, not only in the obvious sense of acquiring certain skills but also in the sense of acquiring certain attitudes.’
On the topic of resistance, Foucault (1997: 167) argues that ‘if there is no resistance, there would be no power relations … so resistance comes first, and remain superior to the forces of the process; power relations are obliged to change with the resistance’. Instead of understanding power as possessional, or solely enacted to produce domination, power becomes a creative force ( Beckett & Campbell, 2015). It presents possibilities to resist, contest, disrupt, and destabilise existing arrangements and relations. Resistance, as an original force, opens possibilities for reclaiming and disrupting existing flows of power relations that are often employed to marginalise and restrict bodies and identities ( Beckett et al., 2017). This perspective of power and resistance has been employed, notably within Disability Studies, to investigate disabled people’s navigation of disabling barriers, arrangements, and values across the globe ( Beckett & Campbell, 2015; Lawson & Beckett, 2020).
Holmes (2007: 37) defines the oppositional device as:
a deliberately abnormal, fictional, satirical, delirious, antagonistic or even violent pattern of behaviour that inserts itself into, and distorts, a corporeal, technical, and symbolic configuration of normalised social relations, in such a way as to provoke dissenting public speech.
Such devices serve to interrupt the existing flows of relations throughout the social world and contest the material, and discursive, arrangements that produce ideas and practices. New possibilities emerge, which disrupt normalised patterns of social existence and acceptance, and question the continuation of existing arrangements. For Holmes (2007), oppositional devices are creative and experimental – identified often within the performances of artistic communities. Adaptions to Holmes’s definition have followed, most notably by Beckett and Campbell (2015), who position oppositional devices as the production and proliferation of resistance practices by individuals and collectives. Such practices intervene in the forces of subjugation and facilitate alternative possibilities for existing in the present.
Beckett and Campbell (2015) employ oppositional devices to understand the operations of the social model within UK disability activism. Their presentation of seven intersecting operations capture identifying injustice, formulations of counter rationalities, and strategic actions to facilitate collective disruption of contemporary social organisation. The analytical usefulness of the oppositional device is found within Beckett and Campbell’s (2015) claim that ideas – as technologies – can harness forces of resistance and power to create alternative relations, discourses, and practices. The collective activities, produced by independent living activists, seek to disrupt normative understandings of care and support provision, and introduce a different, arguably preferable, form of existing with – and through – support.
Heterotopias ( Foucault, 1984) exist as counter sites that interrogate, contest, and disrupt the existing ‘order of things’. They can form, and experiment with, destabilising current material and discursive aspects of the social world. Johnson (2006) argues for heterotopias to be understood as worlds within worlds, which can provide critiques of existing societies whilst – simultaneously – inviting an exploration of what is possible and preferable through the reorganisation of spaces. Heterotopias are not always liberatory and can emerge to exercise control over populations and identify deviant beings. Foucault (1998) draws on institutionalised care as a heterotopian example; institutions operate to remove bodies deemed non-productive to the functioning of society, thus, they become a world within worlds (heterotopia) to restrict the social participation of the allegedly ‘useless’ body.
Within the context of disability, heterotopias have been explored to open new deconstructions of ability/disability binaries ( De Schauwer et al., 2017) and to disrupt conceptualisations of inclusion ( Meininger, 2013). Beckett et al. (2017) acknowledge the different forms heterotopian worlds may take, and conclude heterotopias are 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. It has been argued that independent living is a counter narrative, which opposes social constructions of disability and serves to repair disabled people’s identities ( Tarrant, 2022). Producing commentaries on disabled people’s injustices, particularly to realise personal liberation or establish collective solidarity, is essential for progressing emancipation. However, independent living – in this article – is understood differently. Independent living is an idea operationalised to disrupt the relations of power and social formations that prejudice disabled people’s participation in their chosen communities. It can, through disruption, produce creative possibilities for reimagining disability, support, and assistance. Drawing on heterotopia literature, ILMs can be understood as enacting broader patterns of resistance practices, produced by disabled people, to contest existing forms and ideas about the purpose, ethics, and practices of support. This allows for an understanding of ILMs as assemblages of technologies that open heterotopias, engaged in the experimentation of what disabled people can be and do through the ideas of independent living.
Methods
For this article, data from two research projects were combined to analyse and identify common themes and patterns to support the claim for understanding independent living as an oppositional device. The first research project ran from 2015 to 2019 and explored young disabled people’s experiences of disability activism in the UK. Transcripts from 17 individual interviews with young disabled activists and established members of the UK Disabled People’s Movement (DPM) were included. The second research project, initiated in 2020, is an ongoing investigation with multiple research phases into disability youth activism across Europe. Data from Phase 1 (online survey) are included, comprising of 167 responses to open-ended questions on a survey about young disabled people’s experiences of activism and social movements. The projects were led by myself, a disabled academic activist. The first project was funded by Liverpool John Moores University and the second, ongoing project is funded by the University of Leeds and the Leverhulme Trust. Research ethics approval was granted by the host university for each research project.
The inclusion criteria stated participants must identify as a disabled person. It was determined that impairment description and categorisation would not be recorded, as both research projects aligned with the social model of disability ( UPIAS, 1975). This is because the primary focus is on acknowledging the commonality experienced through a disabling social world, with the unnecessary restrictions imposed upon individuals with various health conditions, impairments, and diagnostic labels. It is important to acknowledge that hierarchies of impairment remain a prominent concern within disability activism and social movement organisation ( Campbell & Oliver, 1996), however, the issue remains beyond the scope of this research.
Both projects defined a young person as an individual aged 18 to 35. For the group consisting of established members, in the first research project, participants were required to consider themselves – or be identified by others – as an influential/established member of the UK DPM and all had over 20 years’ experience of disability activism. All participants were from the UK. Sample recruitment was achieved through an open invitation disseminated to UK disabled people’s organisations, online peer networks, and snowball sampling. The second project required all participants to be aged 18 to 35, identify as a disabled person, be interested or active in disability activism, and currently live in a European state (as defined by the United Nations M49 categorisation). An open invitation was disseminated to disabled people’s organisations across Europe (organisations controlled by and for disabled people, and which refer to independent living as part of their organisational strategy and workplan), youth networks, online peer groups, and promoted on social media platforms (Facebook, Twitter, and Instagram).
To preserve confidentiality, the codes in Figure 1 will be used to describe participants.
A thematic analysis procedure was employed. The data were analysed to understand ‘broader assumptions, structures, and meanings [that are] theorised as underpinning what is actually articulated in the data’ ( Braun & Clarke, 2006: 85). The process of analysis included an initial engagement with the data, followed by locating early codes, which then led to identifying potential quotes that can be mapped across, and used to evidence, the four ‘technologies’ ( Foucault, 1988) operating through independent living.
Independent Living as an Oppositional Device
Foucault (1988: 18) sketches out four major ‘technologies’ to analyse the ‘truth games’ and ordering of knowledge:
(1) technologies of production, which permit us to produce, transform, or manipulate things; (2) technologies of sign systems, which permit us to use signs, meanings, symbols, or signification; (3) technologies of power, which determine the conduct of individuals and submit them to certain ends or domination, an objectivising of the subject; (4) technologies of the self, which permit individuals to affect by their own means or with the help of others a certain number of operations on their own bodies and souls, thoughts, conduct, and way of being.
This typology of technologies is useful for understanding how disabled activists, their representative organisations, and allies utilise the concept of independent living to assert control over support arrangements and prioritise self-determination across all aspects of daily life. Beckett and Campbell (2015) argue that oppositional devices can be identified within one, or through a combination of, the technologies outlined above. This provides an analytical approach for gaining insight into the various, and entangled, forms of social organisation and discourses that (re)produce governance and management of disabled bodies through restrictive ‘care’ and ‘support’ provisions. It also facilitates understanding of how disabled people oppose existing arrangements and introduce alternative ideas to realise inclusive societies. Independent living, as an oppositional device, operates across the four technologies in the following ways.
Technologies of Production
Independent living, as an operation within technologies of production, produces an understanding of support and assistance that is rooted in fairness, justice, and self-determination. This is reflected in a survey response by a young disabled activist:
Independent living means everybody can develop fully and freely to live the life they want. (S, aged 25–29, Spain, M)
Here, independent living becomes synonymous with the pursuit of freedom and opportunities to choose how one should live, who to live with, and what aspirations to pursue. This places emphasis on realising support arrangements that produce choice and control for disabled people. Disabled people, through their campaigns, organise to build collectivities and promote solidarity to disrupt existing provisions. For example, the European Independent Living Day promotes disabled people’s demands for realising independent living and raises awareness of the injustices encountered by disabled people’s communities. Additionally, Hale et al. (2020) argue for the emergence of independent living claims from groups often underrepresented within disability activism, such as individuals with chronic illnesses and fatigue.
Independent living is operationalised to produce claims for support and assistance that realise emancipation, but it also produces an understanding of support to challenge – specifically – existing forms of care provision. A survey respondent draws attention to how independent living must focus on contesting traditional service provision, notably the institutionalisation of disabled people:
Deinstitutionalisation should be the focus of our [independent living] work, particularly in France. We must challenge why we are locked away and forgotten about. (S, aged 22–25, France, F, White European)
It is operationalised to disrupt institutionalised care facilities and traditional service provision, which reinforces disabled people’s segregation and isolation from their local and preferred communities. Institutions are a tolerated space that permit disabled people’s imprisonment under the guise of dedicated and professional support ( Spivakovsky et al., 2022). The deinstitutionalisation agenda resists the continuation of such facilities and remains an integral strategy within ILMs ( Crosby, 2022). Disabled activists and their organisations critique institutionalised forms of care to highlight violations and continued injustices. This positions independent living as a production of resistance practices (ideas and activities) that aims to prohibit the continuation of institutions and reallocate resources to effective community-based support.
Technologies of Sign Systems
Independent living, as technologies of sign systems, requires consideration of the references and signifiers that progress its realisation. For example, ILMs rely upon the United Nations Convention on the Rights of Persons with Disabilities – notably Article 19 and General Comment 5 – to outline the statements, principles, and practices necessary to realise and maintain support and participation in society. A survey respondent references the importance of the Convention:
The UN convention for rights of persons with disabilities should be in domestic law. It is what we need to make independent living reality. (S, Aged 30–33, Poland, T, White)
Coalitions of disabled people’s organisations continue their campaigns for embedding the Convention within domestic legislative frameworks, which would reform existing legislation to align with the obligations set out in the Convention ( Waddington, 2018). This has strategic importance to ILMs. The Convention establishes targets and standards, which can be used to scrutinise the activities, agendas, and strategies of individuals and collectives who progress or hinder the realisation of independent living. Resistance practices can emerge as activists and ILMs explore and determine if policy proposals reflect Convention measures.
Independent living operating as an oppositional device can also contest the signs and meanings used to promote professional credibility and service power. Disabled people often have their claims for self-determination undermined by practitioners and traditional service providers, who claim legitimacy and authenticity through their professional status ( Ratzka, 1992). This remains an important aspect of disability activism, as identified through the following quotes:
Independent living activists need to respond to changing environments. We need to focus our work on social struggles against the rise of the far right, neofascism, professionals controlling our lives and support and who go around promoting eugenics. (S, Aged 22–25, England, M, Turk)
There are still a lot of differences within people’s understanding of the scope of independent living but new strategies for independent living, for the future, need to bring people together and challenge the professional power and professionals who try and control what we can do with our lives. (I, Aged over 50, EF, England, M, White)
Here, the respondents situate professionals as part of a range of key actors and groups responsible for creating hostile and violent situations for disabled people’s communities. Professionals, in this instance, are enacting restrictive procedures and placing disabled people in precarious environments. The second quote is an example of independent living operating across multiple technologies. On the one hand, it can be recognised as a technology of power. It is employed strategically by those with assumed professional status to dominate disabled people’s access to, and participation with, support. On the other hand, it is a technology of sign systems as independent living becomes entangled with the authority, and credibility, of the professional. The professional signifies a gatekeeper to resources and opportunities; they can disregard disabled people’s voices, and influence policy-making procedures and outcomes that impact disabled people’s access to sufficient and sustainable support. Independent living, as an oppositional device, draws attention to the signs and meanings produced by professional involvement/interference. ILMs become responsible for contesting the power, authority, and credibility emanating through and by professionals involved in determining, assessing, and delivering care and support.
Technologies of Power
Independent living, as a technology of power, can be operationalised to submit disabled people to rigid parameters of conduct and control. It is important to acknowledge that oppositional devices are open to manipulation and can be repurposed by bodies/groups who intend to establish dominance and coercion ( Beckett & Campbell, 2015). This is most pertinent when independent living is used by alleged allies and traditional service providers to further ideas and practices detrimental to disabled people’s pursuit for self-determination. A survey respondent draws attention to this issue:
Disabled people’s oppression is through design not accident. Emancipation cannot happen when making changes within boundaries of a system that disregards and devalues disabled people, you can see this when oppressors hijack our claims for control and self-determination. They use it against us. (S, Aged 30–33, Wales, F, White)
Claims of hijacking are reflected in broader assessments of contemporary disability politics, most notably by Oliver (2017). His concerns focus on the parasitic nature of organisations and figures who exploit the activities, demands, and strategies of ILMs to achieve ulterior objectives. Often, such objectives achieve minimal progression in realising independent living and can undermine disabled people’s understanding of choice and control. Griffiths (2020) highlights how independent living, within neoliberal arrangements, can lead disabled people to understand the concept as needing to demonstrate self-sufficiency and individual responsibility to navigate injustices. Another survey respondent testifies to this by highlighting how service providers infiltrate disability activism:
Service providers occupy all disability activism spaces. Pretend to be our friends and allies but they are not. They don’t give us support so we deliberately struggle. (S, Aged 30–33, Georgia, F, Georgian)
Independent living, through technologies of power, can also operate as forms of discipline and domination within ILMs. This leads to activists deploying independent living as an operation to exert control over the organisation of disabled people’s social movements and the formulation of activist claims. An interview respondent underlines this point in their assessment of young disabled people influencing independent living activism:
I do think that there is space for new priorities to emerge, that are driven by younger disabled people, but I think that it just creates layers of tension because of the fact that certain things are so wedded with certain individuals. Can you really have a conversation about independent living without being immediately challenged by the older, well known, activists? If you want to challenge something that they’ve said they will likely be in that same room! (I, Aged 30–33, Scotland, F, White)
Young disabled activists encounter negative consequences in their attempts to develop and critique the independent living concept. This is reflected in Griffiths’s (2022b) exploration of young disabled people’s participation within disability activism. Tensions emerge between activists; newcomers are perceived to destabilise ILM progress through their interrogations of integral concepts, such as independent living. Meanwhile, established activists dominate social movement mobilisation by dismissing attempts to consider new, and alternative, opportunities to work with – and through – independent living. This illustrates that independent living, as an oppositional device, can be repurposed to produce discipline over those attempting to resist injustice, including within and external to ILMs.
Technologies of the Self
Finally, as technologies of the self, independent living can be operated by disabled individuals to recognise the emancipatory potential of the concept and transform themselves through resisting the unnecessary restrictions imposed upon them. The interview respondent below identifies the importance of solidarity to achieve this:
Many disabled people think they are powerless within their own communities, in wanting to create the change that they want to see, because they don’t have the skills, they don’t have the experience. But our campaigns can change this. We campaign for choice, independent living, control over our lives. Imagine all disabled people coming to realise that they do matter, that they can make change, that there are ideas that can help liberate them. (I, aged 30–33, England, NB, White)
ILMs provide disabled people with opportunities to explore the relations between themselves, others encountering injustice, and the ideas and practices that can produce subjugation. The respondent considers how disabled people can be liberated through their awareness of activist claims and social movement mobilisations, which challenge the infringements encountered by disabled people. Independent living, here, is employed to facilitate disabled people obtaining a state of ‘salvation’. The disabled individual is not required to accept the political, economic, social, and cultural conditions imposed upon them. These conditions, which are used often to justify oppressive care and support arrangements ( Tarrant, 2022), can be rejected. Instead, the individual can recognise their own worth and value through determining, for themselves, what constitutes sufficient and appropriate support. This is reflected in the comments from two survey respondents:
Disabled people are overlooked in decision-making processes. Experts by experience are important and we should promote ‘nothing about us without us’ to show everybody that we are important, and we can decide how to be supported. (S, Aged 26–29, France, M, Human)
We need to raise awareness of independent living and show all disabled people that we can have choice and control. We need to be able to live our lives and think that inclusion is possible for everybody. (S, Aged 26–29, Germany, A, German)
The comments point to the importance of disabled people recognising themselves as arbiters of their own support needs, who should be regarded as essential to the decision-making process for the design, development, and delivery of support and assistance provision. The principle of ‘nothing about us without us’ is also key for disabled people pursuing a state of self-determination. It refers to an integral principle of disability politics ( Charlton, 2000), which promotes disabled people’s participation in the emergence of ideas and practices necessary to produce accessible and inclusive societies. Independent living, as an idea operating within the technology of the self, introduces disabled people to alternative ways of understanding their own existence, their navigation of exclusionary and oppressive social worlds, and the resistance practices required to eradicate disablement.
Discussion: Independent Living as an Oppositional Device and Independent Living Movements as Opening up Heterotopias
The independent living concept has, throughout its development, been articulated as a totalising and grand vision ( Bott, 2014). It is expected to set out the caveats deemed necessary for producing sufficient, user-led support that will guarantee disabled people’s participation in their preferred communities. Independent living, in this article, is approached differently. The significance and usefulness of the concept is found within the potential for creative and experimental forms of resistance practices. It is a concept that, when employed strategically by disabled people and social movement organisations, opens pathways to contest and reimagine the social world. It is an idea operationalised to identify the violent, exclusionary, and segregative forms of existing support provision. It can be employed to locate the normalised social relations that produce, and allow for tolerance of, restrictive care arrangements – such as the institution, the care agencies that restrict disabled people’s daily activities, and the commissioning frameworks that offer residual forms of support.
Holmes (2007) articulates the merit of oppositional devices to be within the possibility of dissent and disruption: devices that can interrupt existing flows of relations, knowledge orders, and repeated practices that bring about conformity, uniform, and inflexible structures. For Beckett and Campbell (2015), it can facilitate resistance practices to make alternative productions and arrangements.
This is precisely what independent living can achieve. First, it analyses the discriminative processes of invalidation within existing arrangements, which have failed to provide disabled people with support to flourish, have value, worth, and self-determination. These failures may be deliberate, produced through the specific objectives and activities from those who desire to constrain disabled people’s mobility and pursuit of personal aspirations. This is evidenced within funding initiatives supporting institutionalisation agendas ( Series, 2022), or the involvement of service providers who manipulate independent living claims ( Oliver, 2017). These failures can also be produced inadvertently, through the disregard for disabled people’s emancipatory claims, or the continued absence of disabled people from policy-making processes ( Griffiths, 2020). The claims and practices to progress independent living highlights the incapability of existing political, economic, social, and cultural arrangements to prioritise the realisation of accessible and inclusive societies.
Secondly, as an oppositional device, independent living can introduce contingency into the present. The device disrupts by, simultaneously, presenting new – alternative – possibilities for the relations, discourses, and practices that constitute the social world. Independent living can be employed to produce creative and experimental possibilities for reimagining support and assistance for oppressed bodies. It can reorder knowledge and understanding of support to prioritise principles of fairness, justice, and self-determination. It has transformative possibilities for the self, such as individuals determining contemporary restrictions as unnecessary ( Angelova-Mladenova, 2019), and identifying commonality with other oppressed and disabled bodies experiencing subjugation ( Elder-Woodward, 2016). Independent living has the potential to forge alternative ways of thinking about disabled people’s access to, and use of, support and assistance. The everyday, taken for granted conceptualisations of care, along with the assumptions that disabled people’s existence constitutes an administrative and undesirable problem, can be forever disrupted.
If the idea of independent living is to contest, disrupt, and reimagine, then what strategic importance do ILMs have? To complement the argument that independent living ideas operate as oppositional devices, it is useful to consider ILMs as assemblages of technologies that can operate heterotopically. This produces counter sites, allowing for experimental and creative outputs to emerge through positioning independent living as a device that can disrupt and oppose. Baillie et al. (2012) emphasises the importance of heterotopias producing sites of experimentation, and Johnson (2006) considers heterotopias to possess the characteristics necessary for creative pursuits to achieve liberation. ILMs, through activist claim making and social movement activities, achieve two distinctive outcomes.
First, they become spaces to contest the rationalities that reproduce disabled people’s exclusion and discrimination when attempting to, or accessing, contemporary ‘care’ and support provision. This extends the important arguments outlined by Tarrant (2022), who highlights independent living’s role in repairing social identities. ILMs, operating as assemblages of technologies, explore and critique the arrangements and relations that lead to requiring repair, question what forms of repair are needed, and how they can be facilitated. The priority for ILMs is to investigate and oppose the existing, ordinary, and normalised relations and arrangements that produce the need for repair in the first instance. ILMs can distort and unsettle the conditions that lead disabled people to struggle to access sufficient and effective support, and who encounter exclusion and discrimination through its absence, by operating heterotopically.
Secondly, ILMs become counter sites to ‘introduce contingency into the present and demonstrate that if the order of things is socially produced, then it can be made differently’ ( Beckett et al., 2017: 171). Heterotopias can reveal and destabilise foundations of knowledge and build anew. On the one hand, existing orders of knowledge tolerate – and promote – disabled people’s subjugation to the practitioners and professionals within the commissioning and delivery of service provision ( Mladenov & Petri, 2019). ILMs can function to dislocate the relations that reflect, sustain, and reproduce the discursive and material arrangements that cause such subjugation. On the other hand, they are an assemblage of technologies to produce new understandings of support, assistance, and consider how new understandings can influence and affect progression towards emancipation. There is illustration of this distortion through the quotations above. For example, an interview respondent identifies the importance of independent living strategies contesting the authority, and credibility, maintained by professionals engaged in disabled people’s support arrangements. Here, the aim is for ILMs to interrogate and contest the existing order of authority and decision-making exerted by professionals, including commissioners and traditional service providers. The existing order of knowledge permits the continuation of discourses that legitimise and tolerate restrictive arrangements. ILMs emerge to explore such knowledge orders and produce counter sites for disabled people to reimagine, and access, support for emancipatory outcomes.
Respondents illustrated disabled people’s understanding of independent living, activism, and social movement organisation. Their articulation of independent living was rooted in the possibilities of transforming existing care and support provision. From their perspective, independent living can facilitate strategies, activities, and knowledge exchanges that disrupt existing flows and arrangements surrounding care and support, and introduce contingency and alternative options. Heterotopias provide an initial point to imagine and invent new ways of organising the existing world ( Genocchio, 1995). They can challenge ableist claims and processes, which have long invalidated disabled people’s experiences and subject disabled bodies to corrective and eliminatory practices ( Hughes, 2012). In the context of independent living activism, the heterotopia presents opportunities to reconsider disabled people’s participation in their chosen communities and can facilitate a divergence from contemporary ( read exclusionary) arrangements. It introduces the possibility of difference, a way to reorganise societies to facilitate and embrace disabled people’s existence.
Conclusion
Independent living straddles different descriptions, from a grand vision to guiding principles, but it is through its understanding as a device for resistance practices (and ILMs as sites that can unsettle existing arrangements and produce alternative possibilities) where there is most appeal. This article argues that the independent living concept should be understood as a type of technology, an oppositional device ( Holmes, 2007; Beckett & Campbell, 2015), allowing the ideas fashioned from the concept to be operationalised to resist, disrupt, and unsettle the material and discursive arrangements that reproduce disabled people’s marginalisation.
Independent living, as a practice of resistance, can identify the normalised relations and patterns that constitute exclusionary, and oppressive, forms of ‘care’ and assistance. It can also, by operating to disrupt and resist, introduce alternative possibilities for organising the social world and reimagine ‘care’, support, and assistance. This will produce new knowledge orders, which can explore and experiment with principles of justice and self-determination. ILMs, which are integral to operationalising the ideas of independent living, were conceptualised here as assemblages of technologies that open heterotopias ( Foucault, 1984). The claim-making processes and coordinated strategies of ILMs function to distort and unsettle existing relations, patterns, and arrangements that are detrimental to disabled people’s participation in their preferred communities. Their presence is to facilitate the operations of the oppositional device and allow for experimental and creative possibilities to realise inclusive societies.