‘Some people are not allowed to love’: intimate citizenship in the lives of people labelled with intellectual disabilities

Abstract

Disability helps us think differently about the ‘ideal’ neoliberal-able citizen who may not equate to ideas of productive, sexual, ‘normal’. Intimate citizenship – our rights and access to intimacy – is often ignored by those working with people labelled with intellectual disabilities and in research. In this article, we discuss the outcome of a dialogue between self-advocates labelled with intellectual disabilities, academics, service providers, Aboriginal leaders, students and artists about intimate citizenship through love, intimate work and consumption.

Keywords:

• Intimacy
• citizenship
• rights
• arts-informed
• love
• sex

Introduction: the neoliberal citizen

The authors of this article write from Canada and England. We share a Global North location in which, in neoliberal times, the rights and responsibilities assigned to those lucky enough to be included in the category of ‘citizen’ are constantly being contested. As neoliberal governments desire active citizens who are compliant to the needs of the state, this seemingly naturalized image of the ideal citizen has come to dominate popular culture and social policy.

Recently, writers from a critical disability studies perspective have sought to harness disability’s disruptive potential to challenge the myth of the ideal white, male, middle-class, heteronormative and ‘able’ citizen (Goodley and Runswick-Cole 2014). By naming and shaming neoliberal ableism (Goodley 2014) and austerity as ideology (Goodley, Lawthom, and Runswick-Cole 2014), it is possible to expose and disrupt the contemporary preoccupation with sorting some people as ‘scroungers’ who, unlike ‘strivers’, benefit from the generosity of the welfare state.

We know that people with the label of intellectual disabilities (hereby ‘labelled people’)¹ are experiencing urgent material threats to their well-being and, indeed, to their lives in a time of global economic crisis. The confidential inquiry into the deaths of people with intellectual disabilities (Heslop et al. 2014) found that labelled men died on average 13 years sooner than non-disabled men, and labelled women 20 years sooner than non-disabled women. In England, Duffy (2013) has painstakingly documented the ways in which funding cuts target poor people and disabled people. In Canada, labelled people more than double their non-disabled counterparts among those living below the poverty line (Council of Canadians with Disabilities 2015). Labelled parents are increasingly over-represented among families targeted for child welfare intervention (McConnell et al. 2011). As a settler state, these marginalizing experiences reflect and exacerbate colonial practices for Aboriginal and racialized people who are disproportionately labelled with intellectual and developmental disabilities (Salmon 2011). These material threats are serious and urgent but here we argue that we also need to make space for those aspects of citizenship going beyond, as well as intersecting with, material disadvantage, that have so often been denied labelled people.

What is intimate citizenship?

Intimate citizenship² concerns our rights and responsibilities to make personal and private decisions about with whom and how we are in intimate relations (Plummer 2003). Intimate citizenship is fragile in the lives of labelled people, despite the fact that rights to pursue several spheres of intimate life, including sexual identity and expression, friendship, marriage and cohabitation, family life and parenthood, are enshrined in the UN Convention of the Rights of Persons with Disabilities (UN General Assembly 2007). These rights matter because intimate relationships establish the social networks necessary to support employment, educational success, secure housing, family stability, sexual health and well-being, and build resilience against the deleterious effects of structural and interpersonal ableism. Barriers to intimate ties lead to social and economic costs associated with vulnerability to abuse and violence, child welfare involvement, trans-institutionalization and reliance on private and social care resources.

Yet little detailed exploration of labelled people’s experiences of intimate citizenship has been undertaken. We know little about the spaces people may easily access and claim, and how these may shape intimate subjectivities, relations and practice; nor do we know what new ableisms (the exclusions, disadvantages and silencing of people with impairments) or other barriers are encountered within the exercise of intimate rights. Importantly, our knowledge rarely includes labelled people as competent commentators on their own life conditions.

Making space for intimate citizenship

In the following we highlight some key insights from our workshop, organized along the themes of loving, working and consuming.

Loving

I desire a lot of things … I desire the future.

Loving relationships enable us to stay connected with one another, and may protect us from being treated unfairly and from loneliness and violence. Sadly, we know that intimate relationships can also be the sites of abuse, isolation and hostility.

Labelled people described the ways in which they are ‘not allowed to love’ – prevented from having friendships, from having relationships and from bringing up their children. The central role of family members was identified as a key determinant of people’s intimate lives. While some labelled people spoke of loving their families – their parents, their partners and their children – others spoke to the ways in which these relationships are incommensurate. For them, ‘love’ can morph into violence and control of their bodies in ways that leave life-long scars. Stories of forced sterilization and the removal of children (initiated in some cases by family members) haunt discussions of ‘love’, revealing the urgent need to re-imagine parenting, partnerships and friendships in the lives of labelled people. In this way, labelled people can build intimate and loving futures.

While love is often commonly associated with ideas of desire and of wanting, it can be as much about giving to others as receiving. When regarded as passive recipients of care, labelled people are not allowed to give, not allowed to love. As one Mohawk woman described: all her life, she ‘walked alone’, precluded from conventionally loving relationships within the separate, bounded worlds of disability and indigeneity. Eventually, through ‘teaching about ceremony, giving to others (labelled people) and mentorship’, she crafted relationships that went beyond sexual desire to the intimate communities of history and belonging. Labelled people ask that intimate relationships in their lives must be claimed as a right and as a matter of disability justice.

Intimate working

I work and I love. I do it all.

Caring for others and ourselves involves work. Intimate work is seldom talked about or the subject of research, particularly in the context of disability, although there are exceptions (Liddiard 2014). Labelled people are often thought of only as those who are cared for, rather than as people who care (Fudge Schormans 2015). The opportunity for paid work is often promised to labelled people but is often denied. Exclusion from the labour market can also lead to exclusion from the category of citizen, and consequent denial of associated rights and responsibilities (Runswick-Cole, Goodley, and Bates under review; Barnes and Mercer 2005).

While many disabled people desire work and report on the ways in which work allows people to feel valued and to make friendships and relationships, disability and disability studies may be the best places to broaden and trouble notions of work in neocapitalist societies. Not least, disability forces us to re-engage with and to disrupt notions of care and work in disabled people’s intimate lives.

Consuming

Life is more than shopping!

Thinking about ourselves as consumers has become the neoliberal way of understanding our citizenship. Labelled people consume a host of services, goods and support, but, unlike other people, they are often characterized as consuming too much; they stand accused of burdening the fragile economies of the Global North. Disabled people’s contribution to the economy (in generating opportunities for other people to have jobs, provide services and resources and as workers and employers themselves) is typically ignored. Labelled people note the forms of consumption that are required by intimate citizenship; that is, what we need to buy, shop, consume or have in order to be intimate with others and ourselves, raising questions about the material conditions of life with intimate and loving ones. For example, how do people who are under-housed/homeless maintain intimate ties with lovers, friends and family? Does experiencing hunger and an under-heated house negate desire for sex, affection and closeness? How is our intimate citizenship produced by practices centred on the appearance of the body: choosing our own (age-appropriate) clothes; affording beauty and hygiene products; accessing dental and health care – all of which cost money?

While there is more to life than shopping, the basic levels of material deprivation in the lives of labelled people across the globe remains an urgent cause for concern.

Conclusion

We leave you with some questions to ponder:

1.	How can we make ‘real’ the claim that intimate relationships are a right in the lives of labelled people?
2.	How can we create spaces for labelled people to work, while at the same time valuing other forms of activity, including care?
3.	How can we re-imagine consumption in ways that recognize the contribution of disabled people while simultaneously challenging the many material exclusions in their lives?
4.	How can we even begin to talk about intimate citizenship and rights at a time of crisis in states that are failing?
5.	What is the place of intimate citizenship in settler-colonial states?
6.	How can we start to think about intimate citizenship in the many contexts where ableist desires continue to cancel out the desires of disabled people?

Funding

The authors would like to thank the Social Science and Humanities Research Council, Canada [SSHRC Connections Grant # 611-2014-0392]; McMaster University, Canada; The University of Sheffield, UK; Manchester Metropolitan University, UK; Sheffield Hallam University, UK; The University of New South Wales, Australia; and Ryerson University, Canada for funding this network; and the Economic and Social Research Council for funding two projects (ES/K004883/1; ES/F009151/1) which inspired many of the ideas for this network event.

Disclosure statement

No potential conflict of interest was reported by the authors.

Acknowledgements

The authors would like to thank all of the participants in the workshop for generously sharing their thoughts and time with us.

Notes

1. We use the term ‘labelled people’ in this article to refer to people who have been labelled with intellectual impairments/disabilities because it is the prevalent terminology in North America.

2. For an accessible account of intimate citizenship visit: https://bigsocietydis.wordpress.com/2015/05/20/intimate-citizenship-and-learning-disability/.