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Home > Vol 20, No 3 (2014) > Pearson

What's worth got to do with it? Language and the socio-legal advancement of disability rights and equality

Abigail Pearson [1]

Cite as: Pearson A.V., "What's worth got to do with it? Language and the socio-legal advancement of disability rights and equality", (2014) 20(3) Web JCLI.

Abstract

This article considers the appositeness of maintaining the defences of 'reasonable adjustment' and 'undue burden' in legislation relating to the rights of persons with disabilities, and what the maintenance of these concepts with legislative parlance demonstrates about the true status and progress of disability rights in the United Kingdom today. This will be illustrated by an analysis of the Equality Act 2010 and various cases concerning the rights of people with disabilities in relation to dignity and autonomy. The discussion is framed by an analysis of Lord Freud's comments at a recent conference and the disparity between the continued focus on the economics of providing access provisions to persons with disabilities and the emphasis of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) on the fundamental human rights of: dignity, autonomy, recognition and participation. The article will propose that the notions of 'reasonable adjustment' and 'undue burden' should be removed completely from legislative vocabulary and replaced with the phrase: 'assurance of rightful access' and how this may be achieved in practice.

1. Introduction

Lord Freud sparked massive debate with his comments at a Conservative Party Conference fringe event that people with certain disabilities are 'not worth the full wage.' [2] The reaction was swift and vigorous. People began calling for his resignation, questioning how such remarks could be made in this day and age. Now, let us take Lord Freud's comment apart. What exactly is the problem with it? The problem resonates from one source: that word, worth. According to the Oxford English Dictionary worth means: valuable; of value or use (to some end); worthy. [3] The anger appears to originate, justifiably, from the notion that people with disabilities are not as 'valuable' as those without.

Calls came from all corners of the political establishment, reiterating the legal, social and political commitment to the rights of persons with disabilities. [4] Legislation was presented as the shield against Lord Freud's linguistic dragon. However, on closer inspection the shield may not be as shiny as those wielding it may have us believe. This article will demonstrate that English and European Disability rights legislation could be harbouring its own linguistic cuckoo in the form of 'reasonable adjustment' and 'undue burden'. The discussion will consider the appositeness of continuing to conceptualise the rights of people with disabilities in economic terms and what is reasonable or undue. The reaction to Lord Freud's comments demonstrates that there is dissonance between public perception and intention and human rights legislation as it is written. It is important to consider the way in which people with disabilities are presented and represented by legislation and politicians and the effect that this can have on the awareness and advancement of disability rights. Barriers still remain and people with disabilities have to demonstrate their economic 'worth' in order to access their full social and economic rights. This article will first consider the meaning of dignity by looking at different philosophical conceptions and applying this to the various articles of the United Nations Conventions on the Rights of Persons with Disabilities (CRPD) [5] and Article 4(1) of the International Covenant on Civil and Political rights, the ICCPR. [6] Next, it will consider autonomy as a foundational concept for dignity and the difficulties that traditional definitions can pose for people with disabilities. It will posit that social, cultural and economic access is central to a practicable definition of autonomy for people with disabilities. Then it will examine the legislative guidance as to what may be considered 'reasonable' by analysing Article 8 (4) of Optional Protocol to the International Covenant on Economic, Social and Cultural Rights (ICESCR), [7] and the Employment Directive, [8] Article 5 and the Equality Act 2010. Finally, this article will propose that the notions of 'reasonable adjustment' and 'undue burden' should be removed completely from legislative vocabulary and replaced with the phrase: 'assurance of rightful access' and how this may be achieved in practice.

2.Why 'people with disabilities' and not 'disabled people'?

This article will use the term 'people or persons with disabilities' over the traditionally social model label 'disabled people.' For me, social model terminology is unsuited to discussions about rights rather than physical and practical access because the implementation of rights and the attribution of rights to different groups of people are two separate processes. For example, 'Can a person who uses a wheelchair/has a sensory impairment/psychosocial impairment get on the bus?' is one question and focuses on the physical challenges of making something happen. 'Should the person who uses a wheelchair/has a sensory impairment/psychosocial impairment be able to get on the bus?' is another question about a person's right to do something. Now, social modelists would argue that both questions are indicative of barriers to people with disability accessing the bus which come from the society in which they are situated. The first originates from inaccessible infrastructure and a lack of universal design and the second originates from an attitudinal barrier within society which results from a preconceived notion of people with disabilities as something less or other. [9] I support this understanding but I argue that the most effective way to alter attitudes is to emphasise the commonality rather than the difference between groups. Persons with disabilities is not preferred in order to make an argument about the essentialism of disability, rather it is used to avoid the past participle completed action 'disabled' which implies a sense of stasis and removes scope to be anything other than that. As this article is about the push for change in terms of recognising the rights and humanity of people with disabilities and emphasising our commonality with others within our society rather than our difference in order to make a statement for the substantively equal access to our fundamental social, political and human rights it is better that the person rather than the disability come first. It is also the language of the CRPD which is the international benchmark in terms of social, political and cultural rights for people with disabilities.

3.What's worth got to do with it?

If we return to Lord Freud's comments it is necessary to consider the relationship between the word 'worth' and the rights of persons with disabilities.

In terms of human rights legislation and discourse, 'worth' takes on another form: dignity. Dignity can be a particularly problematic concept for persons with disabilities because it has several interpretations. For Kant, dignity results from human beings being governed by rational nature and their ability to regulate their behaviour based on an independent moral code. [10] Consequently, these acts can be said to be autonomous and it is this autonomy that attributes dignity to human beings. [11] However, Schroeder questions the impact of such a restrictive notion of autonomy to ascribe dignity to those with certain medical conditions and disabilities such as those in permanent vegetative state. [12] Under Kant's definition, they would no longer have dignity because they would be unable to control their own lives. This reasoning can also be applied to those with learning difficulties who must work with others in order to direct their lives.

In response to this, Schroeder reformulates Kant's definition as 'dignity is an inviolable property of all human beings, which gives the possessor the right never to be treated simply as a means but always at the same time as an end.' [13] However, this reformulation simply turns dignity into a label without substance because in maintaining the Kantian vocabulary concerning ends and means, Schroeder has simply removed the element of the Kantian definition that she disagrees with whilst not considering what it is that makes dignity an inviolable property of all human beings rather than all beings. Therefore, she expresses neither Kantian, nor theological conceptions of dignity.

However, it would appear that Schroeder aligns herself more to a theological conception of dignity because she draws on the work of Lee [14] and Vautier [15] that the Christian conception of dignity is based on the sanctity of human life as demonstrated by religious thoughts on abortion and suicide and the attribution of dignity in Permanent Vegetative State PVS. Though she concedes that as a label Christian dignity may be too wide as there are those who would identify as Christian whilst not condemning suicide or abortion and supporting the withdrawal of food and fluids from PVS patients. Consequently, she settles on the term traditional Christian dignity. [16] However, she does not appreciate the impact of this on people with or without disabilities who do not believe in God.

Another conception of dignity that relates to persons with disabilities is that of Schiller, [17] who does not believe that spontaneous, unreflexive positive behaviour lacks moral value, rather that it demonstrates grace; the graceful person being somebody who is able to do the right thing without internal struggle or painful process of choice. On the one hand, this conception prizes autonomy which is available to all because it argues that people are not prisoners of their own inclinations whatever those may be. However, in always being shackled to the outer conception and representations of dignity, one is never truly free. [18] In the context of disability rights, Schiller's conception of dignity is linked to heroism and tragedy. [19] Reserving the idea that disability automatically results in suffering perpetuates the idea of the deserving and undeserving disabled. The person with the disability who bears their position stoically, grateful for society's attention conforms to the image of a disabled person and is more laudable than the person who draws attention to the inequality of their situation and wishes to change it. This is problematic for people with disabilities because no progress can be made without a desire for change.

In contrast, Feinberg conceptualises dignity as an expression of respect, [20] although Macklin maintains that using dignity as a label in this way is a useless and redundant concept and that similarly to Kant the value of it originates from the recognition of autonomy. [21]

However, Dworkin shakes the foundations of the importance of autonomy by suggesting that moral autonomy cannot be truly autonomous because all people are governed by the same constraints in terms of their understanding of morality. We are born into a society with conventions and rules which act upon us subconsciously concerning what is morally acceptable or not. [22] Therefore, nobody's moral codes or decisions are autonomous because they will always be influenced by others be it family or those who make the law. This reasoning is of particular value to people with disabilities because there is no barrier to people with cognitive disabilities being considered as morally autonomous because they receive no different or no more input in terms of forming their moral code than a person without a disability. If there is no difference between the autonomy of people with disabilities and people without disabilities, and it is autonomy that gives dignity substance and makes it meaningful, and humans their 'worth'; there can be no question that people with disabilities have an equal and inviolable right to dignity and the wider rights that express it. Consequently, this reasoning makes it untenable for the legislation, politicians and society in general to expect persons with disabilities still to have to justify their rights to access and participation within parameters of not being unduly burdensome and reasonable, which are set by people who they do not affect. This equal and multifaceted right of dignity, autonomy, recognition and participation have been enshrined and made active by the ratification of the CRPD.

4. Dignity and the CRPD

The European Union (EU) ratified the United Nations Conventions on the Rights of Persons with Disabilities (CRPD) on the 23^rd December 2010. The United Kingdom (UK) ratified the Convention 8^th June 2009 meaning that all domestic legislation must be compliant. Consequently, this section of the article will consider dignity and the CRPD as it forms the backdrop for the domestic legislation which will be discussed later. The CRPD is in line with the social model of disability, which recognises people with disabilities as citizens who are disabled by societal barriers. This is a significant step forward for the citizenship rights of persons with disabilities because originally these were viewed as of secondary importance. Article 26 of the Charter of the Fundamental Rights of the European Union 2000 demonstrates an attitude of these rights by charity through the use of language such as 'recognises' and 'respects' [23] in favour of 'enforces,' 'implements,' 'acknowledges' and 'protects'. This language presents people with disabilities as inactive members of their societies who should not expect active protection from discrimination. By way of contrast, the CRPD challenges this attitude by restating the fundamental human rights and freedoms in relation to persons with disabilities along the centralised theme of dignity which is represented by legislative protection of autonomy, participation and recognition. For example, Article 10 of the CRPD [24] suggests the dignity of persons with disabilities originates from a similar respect for the sanctity of human rights as explored by Schroeder. Moreover, Article 5 of the Convention demonstrates Feinberg's believe that dignity is an expression of respect by preserving and promoting the equality of people with disabilities to be recognised everywhere as people before the law, which is important because it gives people with disabilities a means of challenging current legal frameworks concerning their rights. Furthermore, the Convention allows us to address the problematic area of Feinberg's conception of dignity as a label. The phrase 'people with disabilities' attributes an independent and inclusive status to people with disabilities which enables them to stake a claim against their rights as a recognised group within the human rights discourse. Previously, there had been no explicit acknowledgement within human rights legislation of the needs of people with disabilities who were merely granted their socio-cultural rights as people of other status in the International Covenant on Economic, Social and Cultural rights (ICESCR) and the International Covenant on Civil and Political rights, the ICCPR. This independent label of people with disabilities displaces the notion of people of other status and establishes their identity within national conscience as a group of proactive right holders with the attendant responsibility will dispel the outdated image of people with disabilities as subjects dependent on reactive charity from society in order to function and exist.

The Convention also challenges Macklin's belief that dignity is a redundant concept because dignity is used as a label in Articles 8, 24, 25 and the Preamble, which do not contain any reference to the meaning of dignity for people with disabilities, only that it exists and should be respected. This is similarly important to the identification of people with disabilities as a group of right holders because this label of dignity provides an anchor to secure the attendant rights of autonomy, social participation and recognition, which again grounds the rights of people with disabilities within the general human rights discourse.

Then we come to the question of autonomy, though Dworkin has proposed a solution to the Kantian need for moral autonomy the Convention makes reference to other types of autonomy in Articles 8, 9 and 19 which relate to awareness raising, the right to live independently and to participate in socio-cultural and political life respectively. For Quinn, the denial of social experiences through inadequate accessibility to society through a variety of cultural avenues included in the Convention such as equal access to transport and independent living places people at a greater disadvantage than any cognitive impairment. [25] He acknowledges individual parameters, which strengthens his argument because he notes that everybody's life plan regardless of disability status is different, which strengthens his argument because it demonstrates his claims do not solely apply to people with disabilities. [26]

5. Accessibility, Dignity and Personhood

Articles 2 and 5 of the CRPD contain references to the meaning of and the provision Reason Adjustment. Article 2 outlines that reasonable adjustment is 'necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden.' However, this creates a hierarchy of rights in terms of 'reasonable adjustment'. Article 9 of the CRPD concerning accessibility, which applies to key services and means of access such as transport, only requires 'appropriate' measures. The dictionary defines appropriate as 'right or suitable' [27] and effective as 'producing a desired result' or 'officially coming into operation.' [28] The two adjectives set different thresholds for the rights that are deemed to be more important than others. The definition of 'effective', suggests that there must be a quantifiable, traceable programme of implementation. [29] 'Appropriate' on the other hand is a more subjective and lower threshold for states to meet because changes under Article 9 CRPD would only have to demonstrate the potential for impact in certain specific circumstances. Therefore, states may argue that they have implemented appropriate measures to make transportation accessible if they have implemented appropriate measures that address the needs of people with a particular kind of disability.

Quinn's argument that autonomy within the Convention means the ability to participate in and contribute equally within society, makes the right to transportation an important factor in the autonomy of people with disabilities. Autonomy is a foundational concept of dignity, which is an inviolable right. Therefore, if people with disabilities are denied their right to a full autonomy as a consequence of states' failure to make transportation accessible, it can be argued that they are also being denied their inviolable right to dignity. Consequently, access to transportation for people with disabilities could be viewed as a fundamental human right meaning that the higher threshold of effectiveness should always be applied.

6. Dignity and Reasonable Adjustment

Like Lord Freud, reasonable adjustment came to the attention of the public during the consideration of the duty and right of persons with disabilities to enter the employment context. 'Reasonable adjustment' first appeared in the Employment Directive, [30] ensuring that people with disabilities could access employment and training. This creates a link between the right to social and cultural access for people with disabilities and the relationship between rights and duties. Harré defines relationship between rights and duties as being that one party has a duty to another if that party has an obligation to do something for the other. [31] The Directive imposed a duty on people with disabilities: the duty to work. This brings recognition that people with disabilities are able to make useful contributions, which is a central embodiment of the CRPD. [32] Subsequently, there is an obligation on behalf of states to ensure that people with disabilities are able to access their socio-political rights in return. In this light, the concepts of 'reasonable adjustment' and 'undue burden' become unsustainable. People with disabilities, desire no more than substantively equal access to services but are asked to modify their expectations within parameters defined by people without disabilities, despite having the same duties place upon them. However, framing the discussion of the needs and rights of people with disabilities with this rights and duties pay-off scenario is precarious. There are those who are unable to work due to the nature or severity of their impairment. Consequently, it may be possible to argue that they are not performing 'their duty' and therefore cannot expect the attendant rights to be provided to them. The CRPD prevents such a rationalisation. It is not framed on the basis of work and labour, but focuses on contribution, [33] which is a fluid concept. Any contribution made to society by people with disabilities is fulfilment of their side of the reciprocal bargain of rights and duties. Appreciation of social contributions is evident in that the majority of EU countries have systems in place to support members of society economically, whilst they make non-economically motivated contributions. If the contributions of all parties are recognised as equal, then the rights of all parties must also be equally recognised.

Guidance as to what should be considered reasonable adjustment is provided by Article 8 (4) of Optional Protocol to the International Covenant on Economic, Social and Cultural Rights (ICESCR). [34]

The rights of people with disabilities are considered under the title of people of 'other status.' Despite having considered a number of other groups in individualised states including gender, age, colour, language. The under consideration of the needs of people with disabilities can be used as a means of challenging this definition of reasonable in the context of disability. [35]

Lawson addresses concerns that an anticipatory duty to implement 'reasonable adjustment' could be too heavy for service providers if implementation were to occur automatically and suddenly. [36] If people with disabilities were truly regarded as dignified equal rights holders, this would not be a concern as there would be no issue as to whether customers with disabilities would use the service any less than those without disabilities so expense would not be an issue. She proposes that Codes of Practice could be of assistance to people with disabilities in a wide variety of contexts. [37]

However, continuing, unchallenged acceptance of Progressive Realisation is problematic, as it creates uncertainty as to time scales for both service providers and people with disabilities. It also suggests that it is acceptable for people with disabilities to wait to enjoy fundamental human rights.

Realistically, people with disabilities are aware that full accessibility will not happen overnight. Consequently, formally acknowledged Progressive Realisation does little more than create another barrier, due to objectivity and lack of concrete, enforced timescales. It only, guards against retrogression, so effectively it is acceptable for the situation not to move forward as long as it does not go backwards.

'Reasonable adjustment' and 'undue burden' should be understood as a single, three-fold, concept, interlinked by the translation of policy into practice. Firstly, the legislature conceptualises disability in the abstract, individual needs are not considered. Next, this legislation is translated by state actors and travel companies who implement a practical response. This profit conscious setting influences what is defined as a 'reasonable adjustment' to the service. At this stage that 'undue burden' becomes relevant. The culmination occurs when people with disabilities utilise the adaptions. This can include interaction with general members of society. [38]

A literature review indicates that whilst 'reasonable adjustment' has been praised, its limitations, particularly the relationship between 'undue burden' have largely been ignored. Though Quinn considers the potential redistributive effect of 'reasonable accommodation', [39] he cautions that it does not lessen the need for a debate about access to economic and social cultural rights. However, for me, the status of 'reasonable' accommodation is central to this debate. 'Reasonable' in its purest form suggests a lower threshold and implies that people with disabilities should not expect too much. Indeed, the dictionary definition supports this reading. 'Not making unfair demands', 'moderate in price' and 'average'. 'Undue' also mirrors these expectations and justifications because it is defined as being 'greater than is reasonable or excessive.'

French and Keyess argue that the duty to accommodate the needs of people with disabilities will always be hampered by the notion of undue burden. The prevalence of the minority approach in disability discrimination law, leads to people being identified based on their differences and the disadvantages these cause in order to access protective measures against discrimination. [40] They rightly propose that this is problematic. It is neither profitable nor possible to classify people in this way due to the diverse nature of disability. Classification pits the 'protected' group against the rest of society for resources, which may result in an insurmountable power relationship. [41] This power struggle for resources and involvement has been used to prevent people with disabilities participating in society and has been used as both overt and covert control.

Textual analysis is criticised by Paunio and Lindroos-Hovinheimo, who argue that the multi-lingual nature of EU legislation and case-law problematizes what can be construed as an 'ordinary' meaning. [42] This argument is weaker in terms of concepts rather than cases and judicial decisions. The concepts of 'reasonable adjustment' and 'undue burden' exist regardless of language, and will have effect on citizens who live in the country using a particular language and interpreting legislation under that language. British Citizens are affected by EU decisions and the frameworks, as written in English. Therefore, the EU should not be absolved from this kind of critique because of multilingualism, as its effects on the interpretation of legal documents can be felt by citizens, whatever language is used to express the concepts of 'reasonable adjustment' and 'undue burden'.

7. Dignity of People with Disabilities in the United Kingdom

Lord Freud's comments are indicative of the shift in attitude at the domestic level for people with disabilities in the UK today. The media have played a significant role in this with a significant increase in print media between 2010-11. [43] There was a change reported in the number of sympathetic articles concerning disability, with people
with
mental
health
conditions
and
other
'hidden'
impairments
 more
likely
to
be
presented
as
'undeserving'. [44] However, as these findings focused on a particular group of tabloids rather than broadsheets the readings might have been very different had the researchers focused on another group of newspapers?

8. The Equality Act

The Equality Act of 2010 aimed to streamline legislation concerning equality for all members of society with protected characteristics including age, race, gender, sexuality, disability, religious belief, gender reassignment status and HIV status. However, writers such as Hepple have criticised the Act on several grounds. Firstly, although it institutes both direct and indirect discrimination it does not allow for a person to bring one claim which contains elements of both because it would be unduly burdensome to business. [45] At the time of the consultation of the Equality Act, Caroline Gooding, then the head of the Disability Rights Commission and a key figure in the enactment of the DDA 1995 and 2005, criticised the Act for its approach towards disability claiming that it weakened the existing framework. [46] Under the new structure, companies would no longer be obliged to publish specific equality duties relating to persons with disabilities unless they felt it relevant to the functioning of their business [47] which Gooding felt would make it difficult for people with disabilities to bring cases when they had been discriminated against. [48] Additionally, companies were only required to publish equality goals every four years [49] with no specific action plan as to how and when these would be met in a separate document [50], providing that goals had been identified and considered in another document. [51] However, Hepple praises some of the provisions in relation to people with disabilities and reasonable adjustment, for example, the new provisions provided increased protection for persons with disabilities who were treated unfavourably because of a consequence of their disability e.g. 'because they had to use a guide dog which means that they would not have to show that they were less favourably treated than other dog owners, just another person.' [52] However, this type of discrimination may be allowed if patrons of services could show that there was a proportional means of pursuing a particular aim such as protecting the safety of other customers. [53] However, this is as problematic as the notions of reasonable adjustment because it suggests that it is acceptable to prevent specifically people with disabilities from partaking in certain activities in order to 'protect' other people presumably those without disabilities. This then reinforces the notion of people with disabilities as something 'other' or strange that society must be 'prepared' for. This contrast is heightened by the fact that there are many barriers to people with disabilities in terms of key arenas such as employment on an equal footing with people without disabilities. The current legislative framework is not strong or complete enough to allow this legitimate aim defence to go both ways. However, Hepple does criticise the organisation of the Act in relation to its provision around reasonable adjustment because in order to understand what is to be considered reasonable and when the duty arises, authorities and business owners must consult six separate schedules to the Act. Moreover, two kinds of duties to provide reasonable adjustments exist in the Act. Some reasonable adjustments, such as those connected with retail, are anticipatory where others may be reactive. [54] This is a weakness compared to the original position under the Disability Discrimination Act (DDA) 1995 where all reasonable adjustments were anticipatory. Another weakness highlighted by Hepple is that of a linguistic nature as to the wording of the statutory duties under the Act which state that those implementing it should have due regard to the need to achieve the objectives of: eliminating discrimination, harassment, victimisation and any other conduct prohibited by the Act, advancement of equality of opportunity between persons who share a relevant characteristic and persons who do not share it and fostering good relations between persons who share a relevant characteristic and persons who do not share it. [55] He argues that this wording has encouraged a tick list approach which focuses on procedure rather than outcome meaning that if an authority can show that they are considering the equality impact of decisions then they can move on without achieving anything. [56] He argues that it would be better to replace 'to regard' with an obligation to "take such steps as are necessary and proportionate for the progressive realisation of equality." [57] However, I would argue that this change of words would do little in the practical sense to either focus more attention on outcomes rather than procedures or to increase equality for persons with disabilities because the inclusion of the word 'proportionate' which means 'correct or suitable in size, amount, or degree when considered in relation to something else.' [58] This maintains the same difficulties as reasonableness for people with disabilities as one must always assume there will come a point where even if a measure is deemed 'necessary' to overcome the specified disadvantage it will also be considered to be disproportionate in relation to something else such as resources. This means that people with disabilities will still have to justify their access to the rights that all other members of populations enjoy in economic terms which would not move the discourse very far along from where it has been since the enactment of the DDA in 1995 and over fifteen years to the enactment of the Equality Act we should be looking to move forward rather than standing still. Moreover, Hepple's continued commitment to reinforcing the progressive realisation of human rights for people with disabilities is as problematic as Lawson's [59] because if the rate of progressive realisation is not strictly defined and monitored then there may be no impetus on authorities to meet specific time frames which would mean that people with disabilities would have to wait longer than is necessary for their access to rights to become meaningful and real because progressive realisation would create another legislative and societal barrier for them to overcome. Hepple's final praises and criticism for the Act are that it is based on the fundamental principle that equality is an indivisible fundamental human right and as such there can be no hierarchy or equality and also that it recognises that true transformative equality cannot occur until the material differences between the situations and life chances of those with protected characteristics are addressed. However, he notes that a weakness of the Act is that it does not offer significant protection to those working in the private sector which includes up to 80% of workers which could lead to them being marginalised and discriminated against and means that British legislation is still far behind that of Canada and South Africa. [60]

Fletcher and O'Brien consider the impact and history of the Disability Rights Commission (DRC) and argued that it made significant strides forward in making The Hepple Report's concept of reflexive or responsive regulation which is based on the understanding that the Law can only do so much and that there needs to be a marriage between the law and other social institutions. [61]The Disability Agenda, which was a move away from the previously inward focusing campaigns which were primarily concerned with raising awareness of the DDA and the DRC, to focusing attention on the impact of disability on other social conditions such as low income and educational attainment in order to promote a holistic approach to the realisation of rights. [62] In spite of this, criticism was levied at the DRC because some felt that too much emphasis had been placed on the needs of and barriers facing people with mobility and visual impairments, rather than cognitive or psycho-social impairments. [63] Fletcher and O'Brien also discuss the DRC's decision to embrace Business Britain, as indicated by the fact that they won the Award of Excellence for Services to British Businesses in 2005 and 2006. The authors argue that this meant that they had embraced the business community, as a 'necessary ally' rather than an 'implacable foe', as embodied by a change in slogan to 'Making Rights a Reality', reflecting the need for a wide range of methods to present rights a something which is integral rather than simply enforced. [64] Though this pragmatism could be seen as positive if it materially changed the lives of people with disabilities for the better; though at the end of this article the authors claim that poverty for people with disabilities has risen and employment figures have fallen, [65] there is something unpalatable about an organisation formed with the purpose of advancing the rights of people with disabilities, becoming so closely entangled with a sector that has dictated their treatment and access to their rights on the grounds of costs and profits. The employment sector has been used by successive governments as a means of ignoring the dignity and autonomy of people with disabilities by forcing them into unsuitable work placements with inadequate state support and forcing them to justify their need for this or to risk losing all together. This has been illustrated by a fall in the number of people receiving Access to Work payments in recent years [66] and the need for people to undergo medical examinations to access Person Independence Payment (PIP) [67] in order to justify that they are 'worthy' of financial assistance from the state, which seems to be a practical embodiment of Lord Freud's comments.

Worryingly, the need for people with disabilities to justify their indivisible rights to dignity and autonomy has become so apparent and linked with economics that more cases have been progressing from the Regional Courts of Protection to the Higher Courts in order to give firm rulings on the status of the rights of dignity and autonomy for persons with disabilities. In the case of Elaine McDonald [68] who as the result of a stroke in 1999 required night-time assistance to use a commode the local council Kensington and Chelsea decided to reduce her support from that of a sleep-in carer for seven nights a week to providing incontinence pads and the carer for only four nights a week in order to save £22,000 per year. [69] Mrs McDonald took this case to the High Court claiming that this cut in support violated her dignity. However, the court decided that Kensington and Chelsea Royal Borough Council were entitled to meet Mrs McDonald's needs in a more economical way through the provision of pads. The case then progressed to the Court of Appeal [70] where it was found that Kensington and Chelsea had been in breach of their statutory duty to Mrs McDonald but since the original case Mrs McDonald's care plan had been reviewed and as such the decision to remove her night-time care was not put into place and so it was found that she had no substantial complaint. The case then progressed to the Supreme Court [71] which upheld the Council's right to amend a care plan to a cheaper alternative but that a key consideration in this process should be the suitability of the provision for the individual and in Mrs McDonald's case the court found that it was. The case was then taken to the European Court of Human Rights [72] who decided that during the period from the 21^st November 2008 to the 4^th November 2009, the Council's presumption that Mrs McDonald should use incontinence pads had interfered with her right to respect for her family and private life under Article 8 of the European Convention of Human Rights. However, from the 4^th of November onwards the Court found that as the Council had respected its due process with regular care reviews, it had balanced Mrs McDonald's needs with those of other care-users in the wider community and as such the action taken was considered proportionate and necessary in a democratic society and her complaint failed.

The finding of the European Court is distressing and indicative of the increasingly economic perspective onto the rights of people with disabilities because it demonstrates that fundamental rights such as privacy and dignity can be violated and this be deemed acceptable by the highest courts providing that it is proportionate, necessary and democratic. This indicates that people with disabilities will never fully enjoy substantively equal rights as others do until we stop weighing them against the needs of those without disabilities who in that particular state will never suffer this kind of basic indignity. This therefore could institute a notion of a parallel but lesser notion of dignity for people with disabilities compared to those without disabilities which is based on economic rather than human worth.

Two recent Court of Appeal cases have thrown previous understanding of autonomy in relation to people with cognitive impairments. [73] P a man with a cognitive impairment was found to have been deprived of his liberty during his placement in a supported living house because he had no option to leave the facility. This overturned a previous decision of the Court of Protection, that he was not deprived of his liberty, because the extent of his disabilities meant that he was living as 'normal' a life as was possible. [74] However, the Court of Appeal argued that there should not be a higher threshold for autonomy than those without, so the fact that he had no option to leave deprived him of his liberty regardless of his feelings about or reasons for his placement. The same line of reasoning was applied in P&Q, where a woman was under constant supervision in an NHS unit, even though she had shown no desire to go out alone. [75] The dissenting judges to the appeal argued that Article 5 of the European Convention on Human Rights had never been applied to those held in domestic settings. However, Baroness Hale made the point, that:

'[...] my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage." [76]

In as far as it is positive that people with disabilities should not have to reach a higher threshold for autonomy than those without. Care should be taken not to disregard the right of a person with a disability to decide not to do something. It could be argued that paternalistically deciding that a person with a disability has been deprived of their liberty in line with those of the general population, is no more enlightened than the opposite, if that person is shown to be happy with that situation.

9. Solutions

In order to exercise the spectre of 'worth' and justification, rather than equality and dignity from the discussion of disability rights implementation I would propose that the disability movement needs to focus its activities and campaigning on demonstrating to policy makers the negative impact of continuing to consider access to rights in terms of reasonable or unreasonable, due or undue burden. It would be beneficial to promote a change in objective and wording to: the 'assurance of rightful access.' [77] This would provide an objective and definite standard which would create certainty. Semantically it overcomes the shortcomings of reasonable adjustment because 'rightful' centres the concept within the CRPD and creates accessibility as something that cannot and should not be denied to persons with disabilities on economic grounds, which is not possible with any other human right. Access should be interpreted in line with Article 9 of the CRPD to apply to all areas of society at all times and it should be interpreted to make the duty to ensure access anticipatory.

Change cannot occur in a resource vacuum, however the current benefit analysis approach to what may be considered a reasonable adjustment demonstrates the primary problem with it and its relationship to undue burden because the current system places the burden onto people with disabilities to prove that they are worth the expense of the adjustment to enable their access. Crespi offers a reinterpretation of this burden from a cost benefit analysis to a cost vs loss benefit analysis which would consider what society would lose in terms of input from not having people with disabilities on a substantively equal basis with others, rather than the cost of enabling their involvement in monetary terms. [78] This would best embrace the idea of 'rightful access' and be a true acknowledgement of the dignity (worth) of people with disabilities because it would refocus attention on them as a group who can make contribution to their societies and enrich them in the process.

10. How might this be achieved in practice?

Gybels considered how to fund increased access to information technology for people with disabilities and these measures could be applied to society more widely. [79] His first suggestion was that cost could be borne in a similar way to those related to health and safety which he argues are always seen as proportionate and not an undue burden. The clarity that this provides is likely to encourage innovation and development in terms of access provisions in order to ensure compliance and competition within markets. However, a weakness in this argument is that the needs of persons with disabilities are not as readily understood and accepted as the need for health and safety. Until the paradigm shift of the CRPD is complete and people with disabilities can be inconspicuous in their societies by virtue of their presence it is unlikely that the negative impact of a failure to provide full and effective access measures will be understood sufficiently to draw public support.

Gybel's second argument is that general taxation could be used to fund accessibility provisions. [80] Whilst he notes that such a scheme would be vulnerable to changing political agendas and priorities, he fails to consider that such a move would not dispel or address the notions of rights by charity. People with disabilities would still have to justify their access to rights in order to argue for their right to claim resources from other members of society.

A system based the current EU tax incentives for research and development could be used to finance accessibility provisions. [81] These schemes offer a reduction in tax for companies' based on the amount spent on research and development, which could be applied to accessibility. Administratively, they are attractive because compared to grants and loans, the size and scope of the exemption can be altered with few changes and there is no need to alter the amount for the running of the whole exemption scheme. Additionally, there is compatibility with existing taxation processes which cuts both the cost and complexity of implementation for companies and authorities. Moreover, the precedent for neutral drafting would mean that tax exemptions can be applied to large and small enterprises.

Special Research and Development allowances allow companies to deduct more than 100 per cent of their current eligible expenditure from their taxable income. [82] This scheme is attractive to both parties. It offers some of the advantages of Gybels' mainstreaming and integration argument, such as increased levels of innovation to maintain a sense of competition with competitors, which results in increased investment, but the tax incentive means that this is not dependent on wider public understanding and support, as businesses will proactively lower tax burdens.

Accelerated depreciation schemes for investments (machinery, equipment, buildings, intangibles), [83] could be used to answer the concerns relating to the cost of maintaining accessibility related equipment such as lifts, automatic ramps, specially built facilities. This measure may have the potential to accelerate repairs as companies will know that a portion of the costs could be reclaimed so financial concerns will be reduced improving consistency of access.

Lastly, a tax credit based scheme would allow companies to directly deduct a specific share of access provision expenses from their corporate tax liabilities, which has all of the advantages of the previous schemes. [84]

11. Conclusion

To conclude, the use of language surrounding disability and human rights is both delicate and powerful. It has the potential to both effect change but also to limit change, as is shown by the notions of 'reasonable adjustment' and 'undue burden.' If society is to truly acknowledge the real human, as opposed to economic worth of persons with disabilities, then it is time that the legal and political establishment looked to its own use of language and what this reveals about the true progress and status of disability rights and equality in the United Kingdom today. In order achieve this it is necessary for disability rights campaigners and awareness raising organisations to make a change in the vocabulary used to discuss the rights of people with disabilities should shift from notions of reasonableness and proportion in comparison with a group in society, who at the time at which many of the decisions are taken will not be affected by those decisions; to notions of what is the most effective way to ensure the provision of rightful social, political and cultural access for people with disabilities, which emphasises and protects their human worth, rather than focusing on economic impact and burden.

References

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