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Understanding personhood and disability: beginning a dialogue with moral philosophy.

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Understanding personhood and disability: beginning a dialogue with moral philosophy.

Katherine Runswick-Cole, Manchester Metropolitan University

Dan Goodley, The University of Sheffield

A paper presented at The Interdisciplinary Dialogues Seminar Series, The School of Education, The University of Sheffield, Sheffield, UK, on 16th October, 2013

This discussion paper emerges from a wider research project, funded by the ESRC, called Big Society?  Disabled people with learning disabilities and Civil Society.   The project asks broadly ‘how are disabled people with learning disabilities faring in Big Society?’.  This paper is an attempt to begin to bring together some contemporary examples of policy and practice in dialogue with debates within moral philosophy focused on the lives of people with learning disabilities. Kittay and Carlson (2010:6) have described what they term ‘cognitive disability’ as ‘philosophy’s nightmare’, because of the challenges it brings to conceptions of justice premised on capacity, independence and autonomy, and so, as researchers located within disability studies, we are attempting to dialogue with philosophy and, perhaps, nightmares!

Current policy context: Personalisation

The language of the ‘person’ dominates current policy and practice for people with learning disabilities in the UK. The term ‘personalisation’ has gained currency in the field of adult social care since the publication of Valuing People (DoH, 2001).  Although personalization of care and support can manifest itself in many different ways, personalization generally means that the person, thought of as an individual with strengths, preferences and aspirations, is put at the centre of the process of identifying their needs and making choices about how, where and when they are supported to live their lives. (Carr, 2013:3) Despite evidence to the contrary (think Winterbourne View and the Solar Centre, Doncaster[1]) the personalization agenda is intended to have equal resonance in care homes and community settings (Carr, 2013)

 

Person centred approaches

Person-centred approaches are seen as central to the personalization agenda.  Person centred approaches originated in the USA more than thirty years ago as an approach for organizing services for people with ‘intellectual disabilities’ (Mansell and Beadle-Brown, 2004).  Since 2001 they have formed a central strand of the White Paper Valuing People (Mansell and Beadle Brown, 2004).  The essential feature of person centred planning is the focus on the capacities, rather than the deficits, of the individual at the heart of the plan. Professionals are required to attend to what matters to the service user rather than impose their own goals upon them. The role of the individual’s family and social networks is seen as crucial to person centred approaches (Mansell and Beadle-Brown, 2004). Person centred planning requires a conscious commitment by all those involved to share power and to shift the locus of control towards the person at the centre of the plan (Sanderson, 2000).  This means that the person chooses: who is involved in the process; timings and surroundings of the meetings; family members and friends are partners in planning; the plan reflects what is important to the person, their capacities and what support they require (Sanderson, 2000). Crucially, a plan should not just be about the availability of service provision and should include what is possible as well as what might be currently available for the person (Sanderson, 2000). 

 

Issues of choice and control in services are considered to be central to person centred approaches (Carr, 2013).  However, independent living “does not mean living on your own or doing things alone”, but rather it means “having choice and control over the assistance and/or equipment needed to go about your daily life; having equal access to housing, transport and mobility, health, employment and education and training opportunities’ (Office for Disability Issues, 2008:11 cited in Carr, 2013: 5).

 

Person centred planning – recognizing personhood?

Person centred plans stress the need to put the ‘person’ at the heart of the action.  The person’s wishes, dreams, hopes and fears are prioritized: the ‘focus person’ matters. Person centred plans are an act of recognition, people with learning disabilities are “persons” with a right to have ‘choices’ and to ‘be in control’ and this policy mantra has dominated care services and practices in England since 2001.  In many ways, of course, this approach is to be welcomed, people whose voices and wishes have been marginalized in the past should now be put at the centre.  We know that sometimes (often?) the system fails but the principle of putting the person at the centre remains. That said, there is something that makes us feel uneasy about the ‘person centred plans’ for people with learning disabilities…

 

Non-disabled people (for the most part) are not the subjects of personalization; they do not have person centred plans, and this difference is, in part, from where our sense of unease originates.  The naming of ‘the person’ in person centred plans is an attempt to recognize people with learning disabilities as ‘full human beings’, and yet, it is through this act of recognition that there is a simultaneously re-articulation of the view that people with LD have not, and might not, be seen as persons. Paradoxically, the act of naming the individual with learning disabilities as ‘a person’ has the potential both to make and unmake their personhood.

 

The question of personhood matters, it is crucial, because our sense of who and who is not a person will determine who can enjoy rights and protections, as well as the responsibilities, that personhood brings (Taylor, 2013).  The words ‘person’ and ‘human’ are often used interchangeably but an individual’s de facto status as human does not necessarily mean that they can claim the status of person with the entitlements and protections that the status of “person” confers (Taylor, 2013). Kittay (2011) describes how in theorizing of social justice those with ‘severe cognitive impairments’ have often been consigned to the category of ‘human nonpersons’ for whom it is impossible to argue for social justice because theories of social justice couple dignity ‘with the capacity for autonomy’ (which is often contested or denied in the lives of disabled people with learning disabilities).

 

In the Rawlsian view, theories of social justice are premised on the free association of equal citizens in which the inequalities of race, class, gender and dis/ability are ignored; rationality is presented as the marker of moral personhood (Taylor, 2013). When Rawls (1980: 546) asserts that the problem of social justice is one for “those who are fully and active and morally conscientious participants in society, and directly or indirectly associate together through a complete life”, as Berube (2010) says, he relegates the lives of disabled people with learning disabilities to the margins. The Rawlsian view has been widely contested, by Kittay, Nussbaum and Wong among others, and it is clearly important to continue to debate personhood in this way. (See Kittay and Carlson, 2010).

But, crucially, Taylor (2013:8) suggests that such debates are, themselves, potentially problematic:  “these inquiries [philosophical debates] themselves function to maintain certain ideas about ability and disability” and that “even the arguments that advocate a reconsideration of philosophical presumptions, uphold, rather than dismiss, a sense of stable qualifying conditions of personhood and humanity.” (Taylor, 2013: 8).  In the lives of people with learning disabilities, norms of intelligence, competency and dependency are used not only to determine who and who is not considered to have a learning disability, but who and who is not considered to be a person (Taylor, 2013).  This theorizing in reference to the norm is what Butler calls an “act of normative violence” that serves to limit and to police ‘the parameters of personhoood’ (Butler, 2004: 56).

 

Taylor (2013:4) accepts that it may be politically and pragmatically necessary to appeal to ‘a pre-discursive or a naturalized version of the human’ in order to advocate for people with learning disabilities.  Person centred approaches are, perhaps, an example of such political pragmatism, but she also wishes to respond to the acts of normative violence that limit possibilities for personhood. And so, Taylor’s (2013) urges us to transform our understanding of the human by appealing to our shared vulnerability.  For Taylor (2013: 11) “vulnerability is not (only) a lived condition, but a condition of living” and so personhood ‘rests not on qualifying conditions thresholds of ability, but rather on the responsibility that we have to each other as normatively vulnerable beings. (Taylor, 2013: 15).

 

Conclusion

And so as we begin to work with organizations of and for disabled people who are working in the context of personalization and person centred planning in their day-to-day practice, we ask:

 

  • How do the debates about personhood operate in the lives of disabled people?
  • What kinds of persons made and unmade within policy and practice?
  • What impact does this have on the day-to-day lives of people with learning disabilities?
  • Is it possible to claim (normative) personhood in the lives of disabled people with learning disabilities while simultaneously acknowledging vulnerability as a condition of living?

 

Challenging times ahead!  But to paraphrase Nick Ross ‘don’t have philosophical nightmares and do sleep well!”

 

References

Berube, M. (2010) Equality, Freedom and/or Justice for All: a response to Martha Nussbaum in Kittay, E.F. and Carlson, L. (Eds) (2010) Cognitive Disability and its Challenge to Moral Philosophy, Chichester, West Sussex: Wiley-Blackwell pp.97-110

Butler, J. (2004) Undoing Gender, Minneapolis: University of Minnesota Press

Carr, S. (2013) Personalisation – a rough guide, London: Social Care Institute for Excellence

Department of Health (2001) Valuing People, London: Department of Health

Kittay, E.F. (2011) The ethics of care, dependence and disability, An International Journal of Jurisprudence and Philosophy of the Law, 24 (1): 49-58

Kittay, E.F. and Carlson, L. (201) Introducion: Rethinking Philosophical Presumptions in the Light of Cognitive Disability in Kittay, E.F. and Carlson, L. (Eds) (2010) Cognitive Disability and its Challenge to Moral Philosophy, Chichester, West Sussex: Wiley-Blackwell

Mansell, J. and Beadle-Brown, J. (2004) Person-centred planning or

person-centred action? A response to the commentaries. Journal of Applied Research

in Intellectual Disabilities, 17, 31-35.

Rawls, J. (1980) A Theory of Justice, Cambridge, Mass.: Harvard Press.

Sanderson, H. (2000) Person centred planning: key features and approaches, York: Joseph Rowntree Foundation

Taylor, A. (2013) “Lives Worth Living”: Theorizing Moral Status and Expressions of Human Life, Disability Studies Quarterly, 33 (4) Online at: http://dsq-sds.org/article/view/3875

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


[1] Winterbourne View and the Solar Centre, Doncaster are both examples of sustained abuse of disabled people in UK ‘care’ homes.

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4 thoughts on “Understanding personhood and disability: beginning a dialogue with moral philosophy.

  1. A great question that goes to the heart of the issues we who participate with disabled people in the thinking, action and learning process we’ve called ‘person centred planning’ need to wrestle with.

    There are a few points I’d like to make. I would dispute that non-disabled people ‘do not have personalisation’. I’d argue that personalisation is less intentional and conscious in non-disabled peoples lives because (with multiple exceptions) the exercise of choice and control in their lives is less difficult. A quick search on the concept of personalisation suggests it is used most by marketers and advertisers seeking ways of convincing all of us that we are exercising choice and control through decisions about which marque of car to buy, or what brand of cola: a whole personalisation industry exists, working out how to ‘personalise’ virtually every product on the market.

    Agreed, this is not quite the personalisation we seek in person centred practices! We understand personalisation as meaning exercising choice over where we live, who we live with, where we need support, we have control over who provides this support, where and when. We recognise that this level of personalisation has not been achieved yet for most disabled people, and use person centred practices as practical ways of increasing choice and control, self determination in people’s lives.

    I’d also dispute the notion that non-disabled people do not have ‘plans’. While we don’t call them person centred plans, many non-disabled people make plans about aspects of their lives, whether these are long term plans for their retirement, plans to move house, change jobs, for the next holiday. They make short term plans too, about how to use their evening, what to get for tea. They may also involve other people in this planning, sometimes they will bring in experts and advisers to help them, sometimes it is with family and friends. Sometimes it’s done quite formally, other times it’s part of very informal discussions. The subject matter of person centred planning is identical – how to get the most out of life. It’s done with intention, consciously, because winning choice and control in a disablist society and from the service systems this society has constructed is not always simple, automatic or easy.

    You’re right that non-disabled people don’t generally sit down once a year and make a big plan about the whole of their lives on a huge and colourful piece of paper. That’s why in recent years in communities like the Learning Community for Person Centred Practices we’ve been refining person centred thinking and person centred practices to match more closely with how everyone tends to plan their lives; simpler easier thinking tools integrated into people’s everyday lives and supports, planning broken down into bite sized chunks.

    We also recognise the issue of the imbalance in the power to ask questions that exists between professionals and disabled people.

    A social worker or a nurse can ask questions about the most intimate and detailed aspects of our lives and require full openness – every aspect of disabled peoples lives are the subject of perpetual scrutiny in health and social care systems. If those disabled people were to ask the same questions back, they get no answers. Answering those questions would cross ‘professional boundaries’.

    Therefore in person centred practice we try not to ask questions we are not prepared to answer ourselves. We write our own one page profiles giving information about what matters to us and how to support us well, our own daily routines, and we share them with people around us, including people we plan with and their families. We think about our own communication, and our own decision making.

    When we’ve presented this idea of sharing information about what people like and admire about you, about what matters to you and what support you need through a one page profile, some professionals have found it very difficult. Exposing this information about themselves definitely leads to feelings of “vulnerability”.

    Your questions about personhood are very stimulating. Questions of personalisation and independence can risk thinking of people in an atomised way, I’d suggest it’s vital to think about the person as part of a network of interdependent relationships.

    Understanding, mapping and helping to strengthen the supportive networks between the person, their circle and the community is another crucial aspect of person centred work. The importance of this was brought home to me by the recent US government shutdown. We think of state support as being consistent and reliable. This is not always the case, and when governments are shut down, communities, families and personal commitments are what’s left. So much state support is provided for purely functional purposes: to help people wash, dress, eat. If only a small fraction of this time was spent on helping people build their network of relationships, levels of social isolation and loneliness could be massively reduced.

    Max Neill

    • Hi Max

      I think the point you make about plans and personalisation in the lives of everybody is clearly right; it is the matter of how they are articulated in different people’s lives. Margaret Shildrick has written about this idea that disabled people are required to make visible their interdependencies to access support and similarly, you could argue that they are required to share their plans. I think that you are helpfully answering some of the questions that we posed in the paper. You are describing ways in which personalisation can be used to affirm rather than deny personhood and those are the lessons that need to be learned and to be shared. Developing an understanding of interdependence in all our lives might, I think, help with that.

      Thank you so much for your responses to the blog, please keep them coming 🙂

      Katherine

  2. I would tend to see the need for person-centered planning at this juncture as a response to the recognition that individuals have been (and continue to be) shuffled around in systems whereby the person with a disability is there because that’s what allows the $ to sustain the system to keep it flowing. That said, all the pretty diagrams in the world are not going to help if the choices and possibilities are subtly or overtly defined by those who have control and influence – and are part of systems that continue to value and reward number of people served x hours served as the critical measure of success.

    So, I see the relative artificiality of person-centered planning processes as an attempt (awkwardly delivered in many circumstances) to say “Hey, this is a PERSON not a column in an Excel sheet! So if you are going to be supporting them, you’ll need to know some things about who they are before you can find out what they want and figure out how to help make it happen.”

    I think one of the key benefits of elaborating interdependence through a planning process is that it often helps family members who might be used to scratching and clawing for “systems resources” and are understandably a little skeptical about all this wonderful stuff happening “in the community.” Actually mapping things out a bit can really help, and especially over time as the desire to “put Johnny in a program for x” gets replaced through the development of non-programmatic relationships.

    That’s not to say that individuals with disabilities aren’t skeptical either about some new bunch of professionals sketching out their life on a wall. But I can appreciate how a visual process can be a little less abstract than the usual process of a bunch of people sitting around in a circle throwing out ideas, writing things down, and then emailing out a plan that “we’ve all agreed to.”

    In the end if the people doing the helping aren’t actually invested in person-centered thinking at the core of their reason for getting up in the morning, it doesn’t matter what it looks like or how it is presented, the individual’s needs will continue to be sublimated to the needs of those who are controlling the process.

  3. Hi,

    I think Max articulates some very relevant points. In using the verb ‘to articulate’, I think I find the very point of needing to formulate, discuss and share the plans of disabled people with a wider group. Whilst this articulation is by definition very public in its nature and can be seen as intrusive, it also achieves positive outcomes in a person’s life, which we know from decades of experience, will not normally happen without this process.

    I think the challenge is not why do disabled people have person centred plans, but rather why do the non-disabled not realise the value of focusing on what we want from life and engaging the support of others in achieving it by clear and open articulation of hopes and dreams. In sharing the benefit, we remove the differentiating label.

    Michael

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