philosophy and profound disability: learning from experience

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This article was downloaded by: [Florida Atlantic University] On: 19 November 2014, At: 09:35 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK Disability & Society Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/cdso20 Philosophy and profound disability: learning from experience John Simon Vorhaus a a Faculty of Policy and Society, Institute of Education, London, UK Published online: 14 Nov 2013. To cite this article: John Simon Vorhaus (2014) Philosophy and profound disability: learning from experience, Disability & Society, 29:4, 611-623, DOI: 10.1080/09687599.2013.831749 To link to this article: http://dx.doi.org/10.1080/09687599.2013.831749 PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms- and-conditions

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Page 1: Philosophy and profound disability: learning from experience

This article was downloaded by: [Florida Atlantic University]On: 19 November 2014, At: 09:35Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

Disability & SocietyPublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/cdso20

Philosophy and profound disability:learning from experienceJohn Simon Vorhausa

a Faculty of Policy and Society, Institute of Education, London, UKPublished online: 14 Nov 2013.

To cite this article: John Simon Vorhaus (2014) Philosophy and profound disability: learning fromexperience, Disability & Society, 29:4, 611-623, DOI: 10.1080/09687599.2013.831749

To link to this article: http://dx.doi.org/10.1080/09687599.2013.831749

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all the information (the“Content”) contained in the publications on our platform. However, Taylor & Francis,our agents, and our licensors make no representations or warranties whatsoever as tothe accuracy, completeness, or suitability for any purpose of the Content. Any opinionsand views expressed in this publication are the opinions and views of the authors,and are not the views of or endorsed by Taylor & Francis. The accuracy of the Contentshould not be relied upon and should be independently verified with primary sourcesof information. Taylor and Francis shall not be liable for any losses, actions, claims,proceedings, demands, costs, expenses, damages, and other liabilities whatsoever orhowsoever caused arising directly or indirectly in connection with, in relation to or arisingout of the use of the Content.

This article may be used for research, teaching, and private study purposes. Anysubstantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions

Page 2: Philosophy and profound disability: learning from experience

Philosophy and profound disability: learning from experience

John Simon Vorhaus*

Faculty of Policy and Society, Institute of Education, London, UK

(Received 4 January 2013; final version received 11 July 2013)

Reflection on profound and multiple learning difficulties and disabilities raisesa series of questions in moral and political philosophy, a claim supported byphilosophical argument but also given credence by human testimony, someexamples of which are presented here. I introduce three young people withprofound learning disabilities, before presenting testimony on their behalf,organised so as to coincide with a series of related philosophical questionsabout human dignity, respect, citizenship and dependency. I suggest that thereare implications that apply to all people and not only to those with profoundlearning difficulties.

Keywords: profound learning difficulties; parents; experience; philosophy;dignity; respect; dependency; citizenship

Points of interest

� This paper provides an introductory discussion of what philosophy can learnfrom the parents of people with profound and multiple learning difficulties anddisabilities.

� The lives of three young people are discussed in connection with a series ofquestions in moral and political philosophy.

� I discuss some implications for conceptions of human dignity, respect, citizen-ship and dependency.

� I argue that these implications apply to all people, not only to those withprofound learning difficulties.

Introduction

Reflection on profound and multiple learning difficulties and disabilities raises aseries of questions in moral and political philosophy: about dependency, dignity andrespect, freedom and capability, rights and justice, personhood and citizenship.1 Thisclaim is supported by philosophical argument, but is also given credence by humantestimony, some examples of which are presented here, alongside a brief andintroductory philosophical discussion.

Clare Taylor, Inaaya Rahman and Christiejane Blundell are three young peoplewith profound learning difficulties. Since they were not able to speak to me, or

*Email: [email protected]

© 2013 Taylor & Francis

Disability & Society, 2014Vol. 29, No. 4, 611–623, http://dx.doi.org/10.1080/09687599.2013.831749

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understand the questions I wished to ask, or understand the responses to my ques-tions made on their behalf, I interviewed their parents and carers, and we talkedabout the constraints and possibilities that distinguish their lives – as individuals, aspeople with profound learning difficulties and as people who will require constantcare throughout their lifetime. The emphasis here is on what philosophy can learnfrom experience; hence, I can only mention the familiar methodological questionsthis approach raises, all of which are discussed in this journal (see especially Brett2002). These include the central importance of an opportunity not explored here, ofutilising augmentative and alternative communication to help support a person withprofound learning disabilities to communicate on her own behalf (as illustrated inRubin et al. 2001), the relationship between theory and experience (Disability andSociety special issue 1999), the nature of the research instruments used to gatherdata, the forms and risks of interpretation (Knox, Mok, and Parmenter 2000), and aseries of ethical questions, about anonymity and confidentiality but also and espe-cially consent, on the part of parents, and, in particular, how this applies to a personwho is the subject of an interview in which she is not herself taking part (Rubinet al. 2001).2

I first introduce Clare, Inaaya and Christiejane before presenting testimony ontheir behalf, organised so as to coincide with a series of related philosophical ques-tions that I briefly discuss. I will point out implications for conceptions of humandignity, respect, citizenship and dependency, implications that apply to all peopleand not only to those with profound learning difficulties.

Clare, Inaaya, Christiejane

Clare

Philip Taylor recently retired as an industrial chemist and is married to RachelBarker, a senior civil servant. They have one daughter, Clare, aged 18, who hasprofound and complex learning difficulties. Clare has nine diagnoses, includingCornelia de Lange Syndrome, a developmental disorder characterised by cognitiveimpairment, skeletal abnormality, distinctive facial features and slow growth beforeand after birth. She also has a pituitary abnormality, causing multiple endocrinedifficulties, amongst which are an under-active thyroid and a sub-optimaladrenal response. At the age of 12 Clare was diagnosed with bi-polar affective disor-der. Clare’s schedule includes 10 medications administered at regular intervalsthroughout each day.

Clare needs one-to-one supervision (or more) at all times: she cannot talk oruse sign language, and she has little sense of danger. Although she can walk andmanage steps, she uses a wheelchair when travelling any distance. She needs togo out at least once a day for two hours or more to provide her with stimulation,although it is important to avoid noisy or busy environments which Clare mayfind overwhelming. She has poor fine motor skills and a partially developedchewing mechanism, which puts her at risk of choking. She has reduced sensationin her hands and feet, and seeks sensory simulation, particularly vibro-tactilesensations such as those produced by vibrating toothbrushes and massagers. Sheis subject to extreme mood changes, manifesting themselves in hyperactivity(becoming excitable and sleeping one night in two) or depression – when it canbecome difficult to rouse her before midday, and when she may then becometearful and subdued.

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Rachel and Philip reflect that:

it is possible to be proud of someone like Clare and we are proud of Clare; proud ofwho she is – her mischievousness, her sense of determination, her real sense of humour– and proud of what she can achieve – moving away from home, her ability to copewith change, her resilience.

Inaaya

Asma Begum is a married 30-year-old mother of two children, who lives in theBorough of Tower Hamlets in London. She has two daughters, Sumaiya (aged nine)and Inaaya Rahman (aged five), and it is Inaaya who is described here.

Intrauterine growth restriction was diagnosed during Asma’s pregnancy (poorgrowth of the baby in the mother’s womb) and Inaaya now exhibits global develop-mental delay, and is visually and aurally impaired. She was diagnosed as havingcoarctation (narrowing) of the aorta (on which she has since had surgery) andAlagille syndrome, an autosomal dominant disorder stemming from defects in theNotch signalling pathway. One feature of Alagille syndrome is liver damage causedby abnormalities in the bile ducts. The syndrome is associated with impaired bloodflow from the heart into the lungs and may also affect blood vessels within the brain,the spinal cord and the kidneys. Asma continues to have rounds of meetings withcardiologists, neurologists and a respiratory team: ‘I have to be my own PA[personal assistant] – it’s like running a business’.

The adjustment following Inaaya’s birth was not easy. Asma recalls ‘Welcome toHolland’ by Emily Kingsley, which describes the adaptation required when, aftermonths of preparation, parents find that life has not turned out as expected (Kingsley1987). Kingsley likens this to setting your heart on travelling to one place only tofind that you have arrived somewhere entirely different, with no prospect of a return:you may not have wanted to be here, but here you are and here you must stay. Thefirst year for Asma and her husband was difficult: ‘there were plenty of “why”questions’. But:

Inaaya is still a child, still a child, and as much a person as you and me … I look athow beautiful her eyes are, her eyelashes are, how her hands are, how she feels myarm or leans back on me – that’s her way of giving, her way of reciprocating.

Inaaya is now a ‘bubbly, happy, playful girl, a real fighter’, who is finding her placein the world and enjoying her school. ‘I wouldn’t change her for the world’, Asmasays, ‘She means everything to me’.

Christiejane

Mark and Trish Blundell are the parents of three children: Chelsee (aged 25), Issy(aged 23) and their adopted daughter Christiejane (aged 22). Mark is a senior youthworker and Trish a psychotherapist.

Christiejane was born with bilateral anophthalmia (her eyeballs are absent andshe is blind) and profound learning, social and behavioural difficulties and disabili-ties. She is severely autistic. Otherwise she is ‘pretty healthy, and not under anyconsultant for anything – we have a GP, that’s it’. A year ago she moved into aresidential care home with seven other people with profound learning disabilities.

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When Mark and Trish adopted Christiejane, Trish thought:

I bought this child into our family and our other children had no say in that. Theynever asked for this, and the impact of parenting and living with Christiejane has been‘mega huge’: it has shaped our lives – our other two are almost off our hands butChristiejane never will be. Our lives are organised around Christiejane.

Christiejane is ‘challenging’: ‘the world challenges Christiejane and Christiejanechallenges the world.’ Her behaviour is ‘loud, challenging and destructive – ofthings, towards herself and towards other people’. She tends to scratch Mark andpull Trish’s hair:

When she does it it’s never done maliciously or spitefully … it’s just … ‘this is what Ido’. The biggest problem is that Christiejane is very loud. She shouts all the time. Sowe never get (re)invited to anything. There are very few places that Christiejane isinvited to (in the neurotypical world).

Christiejane is often happy, she smiles, she laughs, but this can disappear with the clickof a finger and she becomes ferociously angry. At another time she might say ‘I’mhappy, happy, happy’ – but is she saying that simply because she been taught to saythat? It’s hard to know. Maybe ‘happy’ is not the right term for her? For Christiejane,perhaps, a good place is ‘neutral’ – where everything in her world is OK, is calm.

Dignity and respect

It is a common belief that all human beings have dignity – human dignity – and, inconsequence, are owed respect or are to be treated respectfully.3 It is also common,at any rate in philosophical literature, to find that the basis for this view includes thecentral importance of our capacity for rationality. According to a tradition goingback to the Stoics, every human being has dignity just in virtue of having rationalcapacities, and the dignity of reason is worthy of respect wherever it is found. Butthis leaves people whose rational capacities are constrained as vulnerable to the viewthat they might somehow not merit the respect owed to those possessing ‘the dignityof reason’. What, for example, would we say of Christiejane, whose limited capacityfor understanding is a principal feature of her relationship with Trish:

She has people in her life, who are important to her, but I’m not convinced she under-stands love and that sort of thing. She knows Mark as ‘dad’ and me as ‘mum’ but Idon’t know what this means to her.

And what of Clare, whose rational capacities are difficult to determine because it ishard to assess her level of understanding: ‘She understands her own name. Shemight understand some words relating to “school”. Beyond this, we don’t knowhow much she understands’.

There is still much to learn about the rational capacities of people like Clare andChristiejane, owing to difficulties in interpretation and limitations in technology andpedagogy. It is not, however, in doubt that their capacity for rationality isconstrained. But equally: constrained rationality is yet evidence of rationality – weshould not assume that this is insufficient for the dignity recognised in the Stoictradition. And in any case, why assume that rationality is the only capacity pertinentto the possession of dignity? Nussbaum argues for a broader approach:

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[F]ull and equal human dignity is possessed by any child of human parents who hasany of an open-ended disjunction of basic capabilities for major human life-activities… we would include a range of children and adults with severe mental difficulties,some of whom are capable of love and care but not of reading and writing, some ofwhom are capable of reading and writing but severely challenged in the area of socialinteraction. (2008, 363)

Although some profoundly disabled people have limited rationality, they may yethave a considerable capacity for activities that, whilst not always requiring extensivecognitive powers, are yet characteristically human when exhibited in the context ofaffectionate relationships with parents, carers and teachers:

On her good days Christiejane laughs, she sings, she can respond. Music is amongstthe activities that she most enjoys. She loves listening to music, and she loves drums –African drums that she can bash and thump. She has an amazing sense of rhythm …She loves water and swimming and being outside. (Trish)

Clare’s favourite activities include ‘white knuckle rides’ at the fairground. She likestravelling … people watching … music, and she likes banging things – she uses theentire house as a percussion instrument … She also likes electric toothbrushes andholding them against her chin. It calms her down. (Rachel)

There are many things Inaaya can do: she can let me know that there are certain foodsshe likes, certain tastes she likes. If she likes something, she might bounce her arms upand down whilst she’s sitting down, or rock and sway or kick her legs … When sherubs my husband’s stubble she will sometimes laugh because it’s prickly. She likesrepetition and sounds: if you give her a table and tap on it 3 times she will copy youand tap on it 3 times. She has learnt that she can copy and she gets enjoyment fromthat. (Asma)

There is, perhaps, a basis for human dignity not only in the capacity for rationality,but also in our capacity to love, express ourselves and develop relationships withother human beings. This alternative conception of human dignity represents asignificant site for further philosophical enquiry (Nussbaum 2008; Vorhaus 2006).Related to this, however, a question arises as to whether Clare, Inaaya andChristiejane are even aware of their dignity, however this is conceived. Trishremarks of Christiejane:

I need to hold her dignity for her. I wanted only women handling her. I didn’t want amale carer cleaning her nappy pads. Once Christiejane ripped her clothes off and beganto rip her nappy pads in a public space. Her carers formed a circle round her, and whatthey were doing was respecting her dignity. Of course, Christiejane wouldn’t under-stand these concepts, and couldn’t protect her dignity herself. ‘Respect for dignity’ istrying to understand the world from Christiejane’s perspective.

It is a natural thought that respect for human dignity requires us to understand theworld from Christiejane’s perspective. In his account of showing respect for persons,Williams notes that an effort is required to look at the world from the ‘human pointof view’: this invites us to make a distinction between, on the one hand, the cohortof persons with profound learning difficulties, and, on the other, each of its memberswho as individuals have their own experience and accounts of disability. What isinvolved here might be explained by saying that:

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[e]ach man is owed an effort at identification: that he should not be regarded as thesurface to which a certain label can be applied, but one should try to see the world(including the label) from his point of view. (Williams 1973, 236)

Respect requires that we do more than simply categorise people as profoundlydisabled, and that we refrain from writing people off as imbeciles or even just as‘profoundly disabled’. Rather, we are to make an effort to look at the world fromtheir point of view; to enquire into what it is like for someone to live their life, tosucceed in taking three assisted steps rather than yesterday’s two, to struggle withthe constraints that prevent or jeopardise communication.

Yet the question arises of why we should make an effort to see another’s pointof view, if that view itself gives evidence of a lack of (self-)respect:

For it is precisely a mark of extreme exploitation or degradation that those who sufferit do not see themselves differently from the way they are seen by the exploiters; eitherthey do not see themselves as anything at all, or they acquiesce passively in the rolefor which they have been cast. (Williams 1973, 237)

Writers as diverse as Silvers and Goffman have described the rationalising andsometimes self-delusive strategies adopted by people whose subordination stemsfrom disability or from the institutional demands to which disability renders themvulnerable (Silvers 1995; Goffman 1991). Pedagogy for learners with severe andcomplex learning difficulties emerged after psychologists working in long-stay hos-pitals found that institutionalised adults labelled as ‘imbeciles’, and consideredunable to learn any social skills, could be trained to undertake numerous tasks forthemselves (Mortimore 1999, 120). Those same adults, however, frequently con-struct an image of themselves that selects from and distorts beliefs so as to arrive ata view that it is beneficial to expound in an institutional setting (Goffman 1991,136–155).

The suggestion is that respect for profoundly disabled people includes the ideaof making an effort to see the world from their point of view. But any such accountmust accommodate the fact that that point of view may itself be incompatible withwhat respect for its possessor requires. We might then ask why persons are owed aneffort at identification? Williams argues that the injunction is: ‘[b]ased on, thoughnot of course fully explained by, the notion that men are conscious beings whonecessarily have intentions and purposes and see what they are doing in a certainlight’ (1973, 236–237). A profoundly disabled person may be unable to speak orcontribute to a process of rational argument, but even when these capacities areabsent, she remains a conscious agent, whose acts reveal human intentions andpurposes, and she is – at least in the standard case – aware of those acts under somedescription. If Williams provides a basis for respecting persons, then it is a basis forrespecting profoundly disabled persons.

Citizenship

Respecting a human being as a person is one thing; respecting her as a citizen isanother (Kjellberg 2002). Someone might agree that all human beings ought to berespected, whilst not agreeing that all human beings are properly regarded ascitizens, perhaps because not all humans have the rational faculties required forcitizenship. Where does this leave people with profound learning disabilities?

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We certainly retain the aspiration of universal citizenship, for this is whatanimates the Disability Discrimination Act 1995 as amended by the SpecialEducational Needs and Disability Act 2001. Explaining the Act and its duties, theDisability Rights Commission identify their goal as ‘a society where all disabledpeople can participate fully as equal citizens’, and affirm that ‘when disabled peopleparticipate – as citizens, customers and employees – everyone benefits’ (See, forexample, Disability Rights Commission 2002: preamble). This outlook has much tobe said in its favour, but at the same time it invites the question of whether participa-tion is indeed an option for all those with profound learning difficulties. Somepeople are not able to take part in political decision-making, in at least this sense;that they would not understand what it means to cast a vote or recognise any of thereasons for opting for one candidate rather than another.

For this reason, amongst others, Anderson places emphasis on the communicativedimension of participation, envisaging democracy as ‘collective self-determination bymeans of open discussion among equals’ (1999, 313). This includes the ‘obligation tolisten respectfully to others’, according to which:

(1) [E]veryone must be granted the initial benefit of the doubt, (2) a person can beignored or excluded from discussion only on demonstrated grounds of communicativeincompetence or unwillingness to engage in fair discussion, and (3) reasonableopportunities must be available to the excluded to demonstrate their communicativecompetence and thereby win back a place in the conversation. (Anderson 1999, 313)

Anderson later concedes that this does not apply to some ‘severely mentally disabledpeople’; but the admission is perfunctory, and it remains worth exploring why theseotherwise appealing conditions cannot accommodate profound disability.

One of the distinguishing characteristics of Clare, Inaaya and Christiejane is alimited ability to communicate:

Inaaya has her own way of communicating. When she’s happy she blows raspberries,and she communicates a lot with her feet and hands: when she’s excited she will kickher feet, and when content she leans against me … I have to be close to Inaaya toengage with her and to get a reaction from her. I talk to her as I approach so that shewill recognise my voice, whether or not she understands anything of what I say.(Asma)

Christiejane has a good memory for words, but, being echolalic [repeating wordsspoken by others] she has no idea what they mean, so although she has lots oflanguage she has very little comprehension. Above all she can’t communicate what shewants and her biggest struggle is communicating what goes on inside of her. She neversays ‘No’. If you say ‘Do you want to play in a park?’ Christiejane may say ‘That is a“Yes”‘. But she may not mean that. She may hate it. (Trish)

[Clare] understands her own name. She might understand some words relating to‘school’. Beyond this, we don’t know how much she understands – we have no wayof knowing how much she communicates with us … The main problem stemmingfrom their being no verbal communication arises when she’s ill … When she wasdepressed she would just sit there and cry. She went into herself – it was very difficultto communicate at all. That was horrible – you just felt so helpless. (Rachel)

As with political participation, Anderson’s communicative competence is not anoption for some profoundly disabled people. This is not to denigrate their capacities;

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on the contrary, it suggests that a preoccupation with political participation andcommunicative competence can itself have a denigrating effect, for profoundlydisabled people are thereby set up to fail the tests these preoccupations are likely tofall back upon. And what is true of profoundly disabled people is also true of manyother classes of people, including young children, some older people, and those inthe advanced stages of numerous degenerative diseases. These persons make up asignificant proportion of our population, and we owe it to them to provide a concep-tion of citizenship that does better justice to their lives than any whose primarydimension is participation in political decision-making. Indeed, as Rachel suggests,what is required is a conception that extends beyond not only political participation,but also productive capacity and earning potential:

[Clare] gets you to think differently – thinking about a person not in terms of howmuch money they can earn or how much they can contribute to the economy, but whatis their ability to be happy, and what is their ability to be nice to people? (Rachel)

Mark and Trish emphasise the importance of accommodating ‘difference’:

Fundamentally society has a problem with difference. There is something about justaccepting that Christiejane is Christiejane, and that her world is limited and we cancome in and come out of it and that is enough. [Any sense of citizenship is] about thecommunity in which she lives – the group she lives in within her residential commu-nity. Christiejane’s world is small; it’s about Christiejane. Her citizenship needs to bescaled down to her world.

Mark suggests that we think in terms of the ‘right to live a life that is fulfilling forChristiejane, in whatever way that might be. It’s about the right to be the personyou are. She has the right to be here, with her own voice’. This view is consonantwith Nussbaum’s, who finds the basis of citizenship to lie in our human dignity,including a life that has available in it ‘truly human functioning’ (2007, 74).Nussbaum identifies the central human capabilities that make up a life worthy ofhuman dignity and it is our dignity that provides the basis for a universal entitlementto a minimum threshold level of those capabilities (2008, 364–365). Nussbaum isinsistent that the same minimum threshold for one and the same set of political enti-tlements should apply to all citizens:

[I]f we say anything else, we fail to respect people with disabilities as fully equal citi-zens. To say that this person will have property rights and that one will not, that thisone will be able to vote and that one will not, seems an intolerable violation of equalrespect for human dignity. (2008, 363)

One reason for the insistence is that, if we countenance different levels of politicalentitlement, we lose a strong incentive to make every effort to develop the capacitiesof people with disabilities to the point that they can exercise these entitlements ontheir own (2008, 363–364). Not least, there is a common tendency to underestimatethe potential of people with learning difficulties, owing to ignorance, prejudice or adisinclination to meet the costs of care. In view of this, Nussbaum insists on a singleset of nonnegotiable social entitlements, working ‘tirelessly to bring all children withdisabilities up to the threshold of capability that we set for other citizens’ (2007, 190).

What of people who do not meet the threshold? They are not to be rejected:there may be good reason to proceed as if everyone was capable of the major

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capabilities just because, although some people may not meet the threshold now,they may yet be enabled to, and nothing less than unqualified support, practical andpolitical, will suffice to overcome the obstacles that now stand in their way.

That said, it is one thing to proceed as if a person has a capacity when, althoughlacking it now, she may attain it in the future, and another if a person is not nowcapable and it is probable or certain that she never will be. What is the position forthose profoundly disabled people who, after all our efforts, are unable to attain someof the central capabilities? Nussbaum stands firm: ‘Here I insist that they still havethese capabilities, for example the right to vote … but in some cases [these] willhave to be exercised in a relationship with a guardian’ (2008, 364). There is a greatdeal to be said about guardianship, its importance in this context, and about howthose who are not able to act or speak for themselves may be represented by thosewho know them best and can be trusted to represent their best interests. At the sametime, what remains an important question is how far Nussbaum’s concept of dignity,or any other concept of dignity, can explain and justify the full range of citizenship-related entitlements that she and others have argued for.

Dependency

Citizenship is often conceived as a relationship between citizen and state: the stateupholds and provides a set of rights and resources in return for a contribution fromthe citizenry, whether economic, social or political. But we have seen that somepeople with profound disabilities are not able to fulfil (some part of) a bargain suchas this; they cannot reciprocate in all the expected ways. One reason stems from thenature of their dependencies, which are typically multiple and extensive. But asRachel remarks, this is surely not a reason to cast anyone adrift:

Clare has no means of voicing, let alone enforcing her rights. The crucial thing is thatClare should be treated humanely and kindly. Society has to provide for peoplelike Clare to be sure they can live in a decent sort of way. She is probably seen as adrain on resources. But society needs to look after her. She’s just a human being witha strong personality who should be respected for who she is. Why should she have abad life just because she has no power to control her own circumstances?

It is worth exploring the nature of the dependency that leaves someone with nopower to control their own circumstances.4 We should not, first of all, underestimatethe place of dependency in some people’s lives. Trish and Mark have no doubtsabout the level of Clare’s dependency on them:

Total! Complete, 100%. Before she moved into her new home we were parents, carers,advocates, we were her eyes, her voice … She needs to be guided in everything shedoes … She is dependent on other people for everything, totally. She is still in nappies.She can’t wipe her own bottom. Or if she does she might wipe any mess on the flooror throw it on the wall. She can finger feed and use a spoon … But unless [food] isput in front of her she will starve.

Asma was also at pains to emphasise the extent of Inaaya’s dependency:

She needs 24/7 care. On a dependency scale of 1–10 it would be 10+or 11. Her devel-opment is globally delayed, she is not aware of danger, I have to do everything for her– everything. What can she do by herself? Inaaya is not able to groom or clothe herself,

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or brush her teeth – she needs almost everything done for her. She can sleep, but eventhen I have to put her to sleep. She can play, but I have to bring the toys to her.

Philip and Rachel say something similar about Clare, but they also mention, towhich we shall return, her scope for agency and assertiveness:

She is very, totally dependent. With a little bit of help she can have a meal, but youhave to supervise very closely … She can’t prepare food. She can’t shop. She can’trecognise danger. She needs bathing, dressing, toileting. But she is not utterly passive.She is not solely a passive recipient. She can say ‘No, I don’t want to do that’ by goingon a ‘sit down strike’. She will use whatever means she has got to let you know whatshe doesn’t want … What we mean by ‘total dependency’ is: ‘you can never leaveClare alone’.

People with profound disabilities are also profoundly dependent. But they are notalone. In a philosophical context it has largely fallen to feminist philosophy to assertthe importance of dependency as a fact of human life and a fitting object of moraland political thought (Kittay 1999; Nussbaum 2007). All humans, and not onlyhumans with profound disabilities, are dependent, largely because we are variouslyvulnerable and disabled at more than one stage in our lives. Fraser and Gordonargue that we should conceive ‘dependency’ as a normal and often valuable humanquality, and they suggest a distinction between ‘socially necessary’ dependence, ‘aninescapable feature of the human condition, experienced particularly intensely in thebeginning and end of the life cycle, as well as frequently in between’, and ‘surplusdependence’, rooted in unjust and potentially remediable social institutions (Fraserand Gordon 1977, 629).

Whatever we make of this distinction we should acknowledge the numerousbasic dependencies that apply to human beings, all of whom require sustained assis-tance for their survival and maturation. Each of us in infancy is dependent on othersfor nourishment and nurturing, and all those who fall seriously ill or who becomeincapacitated are in need of carers to cater to their basic needs. Nor should we forgetother common predicaments: unemployment, for example, and the associated depen-dency on charity and welfare for basic goods.

At the same time, and as demonstrated in numerous disability studies, depen-dency is rarely the sole distinguishing characteristic of a human life: dependent andindependent states generally co-exist within almost all persons (Reindal 1999),5 andeven those with minimal independence are to be included in any account of reci-procity in relationships. Smith suggests that the ‘degree to which a relationship isdependent … is usually in inverse proportion to the level of reciprocity that isperceived to exist within that relationship’ (2001, 579–580). It is often easy tounderestimate the extent of reciprocity, and this perhaps explains a tendency to exag-gerate the varying levels of dependency between persons. Eva Kittay understandsthis better than most. She does not underestimate the dependency of her daughter,who has profound cognitive limitations, cerebral palsy and seizure disorders, but thedependency is not only her daughter’s: ‘I depend on her as well … Others couldtake care of her and even love her – in fact I must think that she will continue tothrive with or without me. But without her, I would wither’ (Kittay 2005, 576).

Kittay is suggesting that ‘dependency’, in the sense that someone is unable toreciprocate in any way at all, is rare and likely to apply only to those persons whoare comatose or unconscious. Certainly it does not apply to profoundly disabled

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persons simply in virtue of their disabilities, for these – along with any associateddependencies – are compatible with a significant capacity to learn and to exerciseagency. Asma, for example, intends that Inaaya should explore her independence asmuch as possible, whether in the cot or in a space on the floor protected withcushions:

You want to keep her safe from danger, but on the other hand if you molly coddle toomuch she will never learn to protect herself when she falls over. Repetition is important– practising the same thing day in, day out. Initially she was always led by adults butnow she can take some initiative for herself. It’s amazing how she learns! If I sing‘row, row, row the boat’ – I would first move Inaaya’s arms so that she begins to rockforwards and backwards. Now, she will take my arms and rock me, to tell me that sheis enjoying herself.

For Tilly, Clare’s support worker, dependency is ‘support with understanding’:

Clare is dependent on me to cook for her. She knows when she’s hungry and she cancommunicate that to me. When she’s had enough she will let you know. But she is nottotally dependent on me. If she’s tired she will take herself to bed. She will stand up,walk to her bedroom, pull back her covers, lie down and go to sleep.

In a three-year study of learning environments for people with profound andcomplex learning difficulties, Dee et al. (2002) observed opportunities for learners tomake choices about what they did and what was done to them. Features contributingto a choice-enhancing environment included placing individuals at the centre ofdecisions taken in planning meetings and tutorials, developing learning plans thatencourage individuals to do what they can for themselves and the provision ofcommunication systems that allow individuals to direct what happens to them. Deeet al. emphasise how easy it is to underestimate the obstacles in the way of fosteringchoice: the time, effort, and material resources required to overcome these, and thesignificance of the small steps taken in an environment that allows for the develop-ment of limited independence. All this applies to Christiejane:

Christiejane always has the potential to develop but the steps along the way are minute… progress is so slow. For example, moving from taking 5 seconds to brush her teethto spending 5 seconds brushing one side of her mouth, then 5 seconds brushing theother, and then not throwing the tooth brush away. And progress on this scale mighttake 9 months, 12 months even. Christiejane has a different rhythm.

It is often loved ones, carers and teachers who learn to notice the detail and rhythmof the lives of such people as Christiejane, Clare and Inaaya. Their testimonyprovides evidence of how profoundly dependent human beings exhibit and developtheir (limited) autonomy, and of how they first require an opportunity to live andlearn in an environment designed to recognise their potential for expression, mobil-ity and comprehension. It is reasonable to expect further insight into the scope fordeveloping personal autonomy, following advances in pedagogy and technologydesigned to identify and encourage small but significant progress in the developmentof human capabilities.

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Learning from experience

I have set out to illustrate the importance of human testimony for philosophicalthinking about disability, as provided by those closest to people with profounddisabilities. Their experience has weight, both because it is their experience and forthe illumination it casts on some of the more abstract questions that philosophydeals with. An important task remains that of continuing to collect testimony fromparents, teachers and carers. And it remains a pressing question, one with whichdevelopments in technology and pedagogy should assist, as to what more can bedone to utilise and develop forms of augmentative and alternative communication,so as to enable those who are profoundly disabled themselves to contribute to aresearch exercise of this kind.

This discussion was also intended as an introduction to a few of the many philo-sophical questions raised by reflection on profound disability – about dignity,respect, citizenship and dependency. I have sought no more than to introduce thesesubjects, to show how they are related to each other and how each is pertinent notonly to the lives of profoundly disabled people but to all of us at some stages in ourlives. There are numerous other questions not even mentioned here – about person-hood, identity, freedom and justice, to mention just a few. Accounts of humanexperience can make a significant contribution to philosophical enquiry into suchquestions as these, as this applies to people with profound learning disabilities andtheir relationship to the rest of the human community.

AcknowledgementsThe author would like to express sincere thanks to Philip and Rachel Barker, Tilly Thompson,Mark and Trish Blundell, Asma Begum and Dr Mathew Rayner (Head of the Stephen HawkingSchool, which Inaaya attends and at which I conducted my interviews with Asma). The authorwould also like to thank Clare, Inaaya and Christiejane: Clare for the many hours I spent in herhome; and all three for all that I learned from hearing about their lives.

Notes1. Significant contributions include Kittay (2005) and Silvers (1995). See also Vorhaus

(2005, 2006, 2007); some philosophical material in these papers is summarised here.2. The research instrument used here was a semi-structured interview. All participants gave

full consent, both to the interview and to the publication of testimony included in thetranscript, having read and approved the final draft. In addition, all respondents waivedthe right to anonymity; they wished their full names and those of their daughters to beincluded in the text. When given an opportunity to re-consider, each interviewee insistedon the use of real names, taking the view that this was in the best interests of the chil-dren, that too little is known about their lives, and that the text is designed to promoteunderstanding of living with profound disabilities. The fact of re-iterated and unanimousinsistence seemed decisive; nevertheless, the question of consent is particularly sensitiveand complex, and there is perhaps no wholly satisfactory resolution of the difficulties thatarise in this area.

3. An alternative view is that dignity attaches to the treatment that human beings should beaccorded. For extended discussion of the concept of dignity, see Vorhaus (2005).

4. The concept of dependency deserves more discussion than I can provide here, including,in particular, in relation to interdependence and independence. See Vorhaus (2007).

5. See also the work of the Independent Living Movement.

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