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Why there should be no right to assisted dying without the right to assisted living

Wed, 22 May 2013 08:32:56 +0100

Assisted dying, or voluntary euthanasia as it was once known before being cleverly re-framed is a confusing issue.

This is because several different strands of the campaign for voluntary euthanasia are presently underway at once. In Parliament a Private Members Bill aims to make lawful the giving of assistance to people to bring about their death, but only where they are already very near dying naturally and in unbearable suffering. In the Courts various people including Tony Nicklinson have battled to have the law clarified with respect to whether assisting a person to take their own life amounts to manslaughter. Such cases include people who wish to end their own life but cannot physically do so alone, but who are not necessarily about die imminently from a terminal illness or their impairment. Previous such cases led to the Director of Public Prosecutions having to publish his prosecution guidelines on the matter. The writer Terry Pratchett who has Alzheimers wishes to be able to end his own life with assistance at a time of his own choosing on the basis that he believes that he would not wish to continue living with the effects of Alzheimers once he reaches a certain point and that when he reaches that point he might otherwise be deemed to lack the capacity to make such a decision.

These are of course quite different scenarios. Yet are frequently conflated which is perhaps unsurprising as all ultimately come under the rubric of assisted dying, or voluntary euthanasia, and stem from the same primary beliefs: first a fundamental belief in self-determination – that is it an individual’s right to choose the timing and manner of their own death. Second, that certain circumstances prevent the exercise of self-determination in these matters, namely being mentally or physically incapacitated by illness or injury thus justifying assistance from a third party in realising the will and preferences of individuals who wish to end their own lives. And thirdly that having a serious health condition or impairment provides a justifiable cause for the State to regard another’s involvement in a death such as a physician or a relative – where that involvement can be shown to have been at the behest of the individual concerned - not as murder or manslaughter but as either suicide or ‘mercy killing’. Taking these beliefs one by one:

Equality of self-determination

I have spent much of my working life in various roles promoting the idea that disabled people should enjoy equality of self-determination with others, and that it is possible to re-design systems, change power relationships, create more accessible and inclusive societies and invest in support and technology to restore to disabled people the power to be the author of their own lives. Hence in principle I support the idea that if non-disabled people can choose the timing and manner of their own death then this should be something disabled people are able to do also because I believe that disabled people should have choices equal to others. But that’s also why I only support it if part of a much wider effort through which disabled people enjoy the right to assisted living, of which dying is but one part. I cannot lend my support to the idea that society respects and supports the will of disabled people over their deaths, but not over every other aspect of their lives. Autonomy rests upon meaningful choices and most of us choose life. When people express the will to die our ordinary reaction is to find ways to deter this course of action. We do not accept at face value the desire of the person on a ledge to jump, or the girl with anorexia to starve herself to death. We should give people every reason to live before we give them the right to assisted suicide, just as we would anyone else who was contemplating this course. No matter what procedural safeguards surround medical decisions regarding life and death decision making, the wider context – and especially following austerity - is not a context in which such procedural safeguards can have real meaning. Further, the rights of the individual have to be weighed against the safety of others. To be fair, this is precisely why the scope of the Private Members Bill has gradually become so narrow, yet the Bill is only one part of a wider campaign - a slippery slope towards achieving these wider goals. That is why is poses such danger.

Self-determination can’t be exercised by people with serious impairments or health conditions without support

This is self-evidently true and somewhat bizarrely assisted suicide goes further to respect the right to self-determination than most other policy proposals. And therein lies the problem – if people are not supported to exercise self-determination in all other aspects of their lives, how can we assume them to be making a balanced choice about dying? This is not just an academic argument. The Daily Mail reported Tony Nicklinson’s daughter as saying ‘Dad hasn’t got a life – his life consists of being washed by strangers, undignified moments watching the world go by around him. Life should be about quality and happiness, not just for the sake of it.’ Is this inevitable? As the Treasury announces that publicly funded social care will be available only to people with ‘substantial needs’ (and even then most likely in a highly rationed way which fails to support self-determination or participation) should we not ask ourselves whether we should not be striving to give people a life before giving them the right to die? People do not make choices about their lives without regard to the opportunities available to them.

Further, it strikes me that suicide generally is a risky affair for which most people are ill-equipped. Might most people wishing to end their lives benefit from expert assistance? Why should non-disabled people not have access to lethal injections if they wish to end their lives and why should we assume that their lives are no worse than people with impairments or health conditions as a consequence of say loneliness? Is physical pain or dementia more of a reason to justify assisted suicide than social disconnectedness? And what of mental illness? Should a person with clinical depression or another mental health problem, when deemed by a psychiatrist to have capacity, not be allowed to seek assistance to take their own life in the avoidance of the suffering they have and might endure again? Why are we so quick to respect the wishes of some people but not others? How can we be objective, when the desire to die is evidently subjective and influenced by a wide range of factors?

The fact that most people - even those who support assisted dying - will balk at the idea of assisted dying being freely available to all suggests that it is not about respecting autonomy at all, but motivated by projected feelings about the quality of life they anticipate having if they were to find themselves in such circumstances.

Making it lawful to allow people to help others commit suicide where the person has an impairment of health condition

The first issue here of course concerns the fundamental and unqualified duty of the State to protect the right to life. It is a major step for the law to become equivocal regarding the lives of some people and would seemingly be discriminatory under human rights law. The state certainly has a duty to protect people against being unlawfully killed. Does the State have a duty to protect the right to life irrespective of the wishes of the individual concerned? Well yes, it’s called suicide watch.

Secondly, the argument in favour of clarifying the law regarding assisted suicide usually begins from a presumption that the third party actively wants to help but is prevented from doing so by the vagueness of the law and that the person seeking the right to die wishes to protect them. But surely there are a great many people who have been asked by relative to help them to end their lives for who the law has provided them with welcome protection from being involved in something they are opposed to or deeply uncomfortable about? Here the law acts to de-personalise the right to refuse. Should people have a right to ask others to actively help them to die? If the law is changed in this respect, isn’t it the case than many more people will feel the pressure to assist a relative to die, and without the law to turn to? And might it be the case that people have relied on the law to back up their instinctive refusal to assist have saved lives by not bowing to pressure in a moment which latterly has passed?

Of course the issue I haven’t touched on here so far is the propensity of families and wider society, consciously or otherwise, to encourage or become complicit in the decision of people to end their lives. Invoking what happened in Germany under Nazi rule generally invites ridicule and rightly so. There is no suggestion in Britain of an active programme of euthanasia or eugenics. But that does not mean that there are not lessons from history that we need to be mindful of, not least the impact of the social and economic climate. Hence I am going to break a cardinal rule and allow this recent interview with the historian Götz Aly in the German newspaper De Spiegl, speak for itself:

Aly: Much of the research on the Nazi era makes a science out of distancing oneself from it or conjuring its demons. The conceit is that people were monsters then -- as if they were completely different from people today.

SPIEGEL: Where are there commonalities?

Aly: The subtitle of my new book is: "A History of Society." I don't just look at the 500 murderers and 200,000 euthanasia victims. Instead, I try to shed light on what was going on around them. For instance, how did family members and neighbors behave? When you take this approach, you encounter reactions that are universally human. The chronically ill and the disabled can become a burden for families. No one is unfamiliar with this experience.

SPIEGEL: Hence the title of your book: "The Burdened." You demonstrate that killings on such a massive scale would not have been possible without the tacit consent of family members.

Aly: I wouldn't call it consent. The organizers of the euthanasia murders systematically asked how often a patient was visited, and by whom. If they had the impression that a family was not very close-knit, the sick person was taken away far more quickly than someone who received regular visits. After the murder, the relatives received an official death certificate with a fabricated cause of death. Most people resigned themselves to this fictitious truth, accepting the chance they were given by the government not to have to know the real cause of death. Later on, this same social phenomenon -- in which crimes were committed in semi-obscurity and a certain amount of looking the other way was required -- is what helped facilitate the Holocaust. The murderers who began the euthanasia program in 1939 were surprised at how little resistance they encountered. It had to do with the shame many family members felt.

SPIEGEL: A sense of shame that still exists today.

Aly: One in eight Germans is directly related to someone who became a victim of these murders. And if you include relatives by marriage, this would apply to almost everyone. But it was not discussed in most families. The murder victims have been forgotten.

SPIEGEL: Relatives can search the archives.

Aly: The institutions that maintain the files on the victims today usually don't publicize the names, even though there are no privacy concerns involved. I asked the president of the federal archive and the federal data protection commissioner why. Both answered: "Please have consideration for the relatives who are still alive." In the case of the Jews, we would never suppress names. But with the so-called crazy people, we're suddenly told that we want to protect their present-day relatives. Why? From what?

SPIEGEL: It's the relatives' fear that perhaps they too have something in them that isn't quite normal.

Aly: That's right. When the first memorials were created 20 years ago and relatives began sending in their first letters, their main concern was: Do we have a genetic disorder in the family?

SPIEGEL: In your book, you quote a father who, in the Nazi period, expected the director of an institution to relieve him of responsibility for his child. This extreme coldness seems disconcerting to us today.

Aly: The extreme nature of it does, but the underlying feeling of being burdened doesn't. My father had dementia for many years before he was put in a nursing home. We knew it wasn't ideal, but there was no other option.

Bad for human rights and bad for business - why MP’s should err on the side of the Lords on ...

Tue, 16 Apr 2013 07:54:39 +0100

Writing in the Guardian Newspaper yesterday, Deputy Prime Minister Nick Clegg said of UK foreign policy that ‘stepping back (from our commitment to human rights) simply for commercial expediency would be walking away from our beliefs.’ Today a Liberal Democrat Minister (Jo Swinson MP) will walk away from her Party’s beliefs and seek to ensure that a central feature of the UK’s domestic human rights protection is repealed – despite the clear will of the House of Lords - simply for commercial expediency via the Enterprise and Regulatory Reform Bill.

There is a saying for this: people in glass houses shouldn’t throw stones.

But perhaps that’s unfair, because the Secretary of State for business, Vince Cable, has suggested that there is in fact no relationship between EHRC’s General Duty and economic growth. In which case, the government can't even be said to be repealing it for the sake of economic recovery but simply to weaken the protection and promotion of equality and human rights, for its own sake. A major loss could be EHRC’s widely celebrated work to monitor how well Britain is doing on equality and human rights.

In fact, I disagree with Vince Cable. Repealing the EHRC’s general duty will affect business. Alongside other changes to the EHRC, such as replacing its Helpline which advised businesses with one only for victims of discrimination, removing its powers to arrange conciliation for businesses who wish to resolve disputes outside of court and stopping funding it to provide advice on the law to businesses, repeal of the General Duty appears to signal that government believes that EHRC’s ‘core role’ lies with its ‘hard powers’ of litigation and enforcement. Yes that’s right: a Bill designed to reduce regulatory burdens will leave the EHRC with fewer options but to reach for the most intrusive and costly legal interventions if it wishes to have any impact on equality and human rights.

Repealing the EHRC’s General Duty is bad for human rights and it is bad for business. That’s why sensible MP’s will know to err on the side of the Lords and vote against the government’s amendments today.

Promoting prejudice should not be the price of challenging the Work Capability Assessment

Mon, 25 Mar 2013 15:05:06 +0100

I don’t know if others share my unease when they read headlines such as ‘brain damaged amputee fit for work , say Atos and see Twitter ignite with indignation?

I would feel equally indignant reading that a person with brain damage who has had a limb amputated – a soldier returning from Afghanistan say – should be presumed to be de facto ‘unfit for work’ for such blanket assumptions, which allow a person to be judged by particular personal characteristics and not their merit, are the stuff of disability discrimination.

Highlighting individual cases of the Work Capability Assessment leading to bad judgments is of course important and legitimate. But doing so in a way which promulgates prejudicial assumptions regarding the meaning and significance of particular impairments or health conditions regarding capacity to work is damaging and must be avoided.

Should EHRC's monitoring role be to hold up a mirror to society, or only to itself?

Wed, 20 Mar 2013 12:38:24 +0100

During debates in the House of Commons and House of Lords regarding repeal of the EHRC’s ‘General Duty’, debate centred on the ‘political’ or ‘symbolic’ significance of the duty. It is of course foolish to treat something with political or symbolic significance as unimportant. As Lord Low noted during Committee stage in the Lords ‘if its inclusion has symbolic value, is it not the case that its removal will have symbolic value also?’ The approach government has sought to take to the EHRC’s general duty can legitimately be considered an expression of its general commitment to equality and human rights. That is precisely why so many members of the House of Lords spoke and voted in support of Baroness Jane Campbell’s amendment to overturn its repeal.

However, a consequence of the focus on its political or symbolic value has been to overlook the fact that its repeal would potentially have deeply significant practical consequences regarding a central function of the Commission: monitoring progress on equality and human rights. Should the government seek to overturn the vote of the House of Lords when the Bill returns to the Commons after the Easter break, it will be important for MP’s to raise this serious issue with Ministers.

Monitoring is a central function of both national equality bodies and national human rights institutions (NHRI’s), and required by both European Union law and the ‘Paris Principles’ regarding the status and mandate of NHRI’s. These bodies play a critical role in holding up a mirror to the society in which they operate and reflecting back the extent of discrimination, inequality or risks to human rights that exist. Through doing so equality and human rights bodies hold both their governments and wider society to account, producing vital information for their Parliament’s, civil society and others such as United Nations treaty monitoring bodies. They also produce an evidence-base of huge value to governments committed to protecting and promoting equality and human rights, especially at a time of financial crisis by allowing efforts to be targeted.

The Equality Act 2006 mandated the EHRC to monitor progress at section 12. It requires the EHRC to develop outcomes and indicators and to report (every 3 years) on the progress Britain is making towards the aim set out at section 3 (the General Duty) of the Equality Act 2006, namely the development of a society in which:

People’s ability to achieve their potential is not limited by prejudice or discrimination, there is respect for and protection of each individual’s human rights, there is respect for the dignity and worth of each individual, each individual has an equal opportunity to participate in society, and there is mutual respect between groups based on an understanding and valuing of diversity and on shared respect for equality and human rights

The EHRC has done so in its reports ‘How Fair is Britain?’ (2010) and the Human Rights Review (2012), which drew upon the Commission’s equality measurement framework and human rights measurement framework and wider analysis. In addition to a very helpful series of interim thematic reports, a further triennial review is due this autumn.

Because the Enterprise and Regulatory Reform Bill proposed to repeal the General Duty, while retaining the Commission’s duty to monitor progress, a consequential amendment was required in order to explain what in future the EHRC would be required in future to monitor progress towards. It proposed instead that the EHRC should monitor progress towards ‘changes in society that are consistent with its duties at sections 8 (equality) and 9 (human rights) of the Equality Act 2006.’

Where the General Duty provides broad societal outcomes towards which the EHRC should orientate is activities, the duties at sections 8 and 9 focus on some of the means to those ends for which the EHRC has particular responsibility, as follows:

Equality and diversity

Promoting understanding of the importance of equality and diversity; Encourage good practice in relation to equality and diversity; promote equality of opportunity; promote awareness and understanding of rights under the equality enactments; Enforce the equality enactments; Work towards the elimination of unlawful discrimination and; Working towards the elimination of unlawful harassment

Human rights

Promote understanding of the importance of human rights; Encourage good practice in relation to human rights; Promote awareness, understanding and protection of human rights and; Encourage public authorities to comply with section 6 of the Human Rights Act 1998

So what might be the ‘changes in society consistent with the duties at section 8 and 9 of the Equality Act 2006’? There seem to me to be two possible answers:

1. If the government expects the EHRC to continue to measure societal outcomes, then it is difficult to understand why and in what ways these would depart from the outcomes provided in the present General Duty, which the EHRC has (via extensive consultation and detailed work) broken down into outcomes and indicators the various measurement frameworks. Hence with or without the General Duty, EHRC would continue to monitor and report upon the same things, which begs the question ‘if it ain’t broke, why fix it’?.

2. On the other hand, ‘changes in society consistent with the duties at sections 8 and 9 of the Equality Act 2006’ could be construed not as a duty to measure society’s progress but rather to measure the impact on society of the EHRC’s own activities in discharging the specified duties at sections 8 and 9.

Of course the EHRC should – in order to demonstrate value for money – evaluate its impact. Some of the evidence it might collect to do so is clearly relevant to assessing broader social progress. But ultimately doing so would be to hold up a mirror to itself, not to society. It seems improbable that this approach would fulfil the intention of section 12 of the 2006 Act, the requirements of European Union law or the Paris Principles.

Moreover, both the EHRC and Britain would be deprived of the evidence it requires to make progress on equality and human rights and of the accountability mechanism which EHRC’s duty to monitor progress provides and which itself helps to drive change.

Should the government seek to overturn the vote in the Lords, Members of Parliament should seek clarification from Ministers on these points. If Ministers are unable to provide cast-iron guarantees that this would not be the effect of the proposed reforms, then this will be a further reason for all who are opposed to the further denigration of Britain’s equality and human rights architecture to resist these reforms and to vote to ensure that the General Duty and EHRC’s duty to monitor progress towards this aim remains intact.

Will Liberal Democrat Ministers sacrifice protection of human rights in the interests of ...

Tue, 12 Mar 2013 21:58:53 +0100

The Enterprise and Regulatory Reform Bill will soon return to the House of Commons, led by the Liberal Democrat Minister Jo Swinson MP on behalf of the Liberal Democrat Business Secretary Vince Cable MP.

It seems very probable that the coalition government will seek to overturn the amendment to s57 of the Bill won by Baroness Jane Campbell last week and supported by prominent Liberal Democrat Peers to prevent repeal of the ‘General Duty’ of the Equality and Human Rights Commission.

The General Duty requires the EHRC to discharge its functions with a view to encouraging the development of a society in which:

people's ability to achieve their potential is not limited by prejudice or discrimination, there is respect for and protection of each individual's human rights, there is respect for the dignity and worth of each individual, each individual has an equal opportunity to participate in society, and there is mutual respect between groups based on understanding and valuing of diversity and on shared respect for equality and human rights'

The General Duty may sound familiar to Liberal Democrats – it is after all almost identical to the preamble of the Party’s constitution

By including reform of the General Duty in this Bill, the coalition government has reduced the protection of human rights – and the fundamental aims of the Liberal Democrat Party - to the status of burdensome ‘red-tape’*.

Perhaps conceding fundamental principles is the price of being in government – especially a coalition government. We are asked to believe that the Liberal Democrats have stopped far worse things happening, such as averting repeal of the Human Rights Act. The history books may confirm this, yet should repeal of the EHRC’s general duty come hot on the heels of the Party’s support for secret courts, it is difficult to see how the Liberal Democrats will in future be able to claim to be the true guardians of human rights and civil liberties.

Perhaps it’s time to rewrite that Constitution.

*The Business Secretary, Vince Cable is reported to have acknowledged that repeal of the EHRC’s General Duty will have zero impact on business or enterprise, so it’s unclear why it is included in this Bill at all

Where now for the Equality and Human Rights Commission?

Tue, 12 Mar 2013 10:10:33 +0100

I’ve spent the past few months working with Parliamentarians to seek to put a stop to government plans to repeal the EHRC’s ‘General Duty’. I won’t go back over the arguments why, but those arguments did prove persuasive last week when the House of Lords voted 217 – 166 in support of Baroness Jane Campbell’s amendment to keep the General Duty on the statute book. The Enterprise and Regulatory Reform Bill, as amended, now goes back to the House of Commons.

I occupy a peculiar vantage point in debates regarding the EHRC, having been a member of the senior management team there between 2007-2011, and now viewing it from the outside in. Though I have kept in touch with colleagues I am acutely aware that with time comes distance. I am not living its daily challenges, which have and continue to be a struggle for survival. Hence, given I have invested so much time and energy defending something which has been accused of creating too broad a task for the EHRC, I thought it only right that I set out some ideas as to how the General Duty can in fact guide the Commission towards a more focused, manageable and critically more meaningful strategy and role.

· The General Duty integrates equality and human rights within a single purposive aim, yet outside a few examples, the EHRC’s equality and human rights mandates largely co-exist as two functions under the same roof. No attention has been paid to integration during the debate regarding reform. Yet among the EHRC’s core duties are to promote compliance by public authorities with the Human Rights Act and the Public Sector Equality Duty. Why have two separate operations underway in relation to each? Working towards a unified approach, in keeping with the General Duty, offers significant opportunities to achieve organisational efficiencies, and in a way which helps reduce burdens on public services. This should include its work with regulators, the guidance it provides to public services and in the context of inquiries (such as its inquiry into human rights in homecare).

· The General Duty offers an opportunity for the EHRC to move on from the ‘group-based’ approach to equalities which defined its predecessors and which made ‘protected characteristics’ (race, disability, gender etc) the focus of action. It very specifically mandates the EHRC to take a universal perspective and to be led by evidence of inequality or vulnerability to human rights violations in determining its priorities. Through doing so there is a far greater probability of the Commission identifying the major strategic initiatives where its role and powers can make a real difference. These may relate to common experiences such as violence (which the Australian Human Rights Commission has identified as a priority having taken a similar approach), or to issues which have a broad impact on equality and human rights such as care (relating to gender equality, disabled people’s rights to independent living, and dignity and autonomy in older age for example). In short, the Commission can and should choose fewer, more strategic issues around which to brigade its resources, and the General Duty helps in enabling it to do so.

· The General Duty requires progress on equality and human rights (not just the enforcement of existing law and standards) and EHRC is tasked at section 12 of the Equality Act 2006 (monitoring progress) with holding up a mirror to Britain to help us see how well we are doing. This work is of central importance. It could be augmented were the EHRC to use its position to propose goals towards which Britain should aim in relation to key issues, and towards which it could also focus its own actions through its strategic planning process. For example, a target to reduce both the use and disproportionate use of stop and search powers by the Police.

· The General Duty requires the EHRC to discharge its functions with a view to ‘encouraging and supporting’ social change. This very clearly promotes partnership and collaboration, requiring the EHRC to work in ways which distribute achievement of the goals in the General Duty across a wide range of actors and which through doing also provides the means to amplify the Commission’s impact. Doing so effectively may require new approaches and skills such as networking, brokerage, and mediation, and it also requires the means to share budgets and other resources such as staff (e.g. through secondments in and out of the organisation). A focus on ‘amplification’ should also help the Commission to focus its business plans and to work strategically across its functions, for example by ensuring that successful legal interventions result in intended changes in institutional practices through communicating the outcomes and through follow-up guidance or practice development, and to ensure it chooses strategic legal interventions which support its longer term goals (such as in relation to reducing the incidence and disproportionate use of stop and search powers – see above)

· Finally, the General Duty clarifies that in meeting its duties to promote respect for the importance of equality and human rights, the EHRC is required to promote principles, not just law, an emphasis which is echoed in the specific duties at sections 8 (equality) and 9 (human rights). This means that the Commission can (and must) engage in activity to foster greater respect for human rights and equality and diversity in Britain, and that it can do in pursuit of a culture of respect for human rights which diminishes over time the need for individuals to rely upon legal action to defend their rights. As such, action to foster more positive attitudes towards and improved understanding of equality and human rights at all levels of society is an ‘invest to save’ initiative, both for the Commission, those with duties and society more generally.

This is how the General Duty could enable the EHRC to develop a more focused and effective role. I hope it is given the opportunity to do so.

House of Lords votes against repeal of EHRC’s general duty

Tue, 05 Mar 2013 09:32:29 +0100

This afternoon (4^th March 2013) Peers voted 217-166 in support of Baroness Jane Campbell’s amendment to s57 of the Enterprise and Regulatory Reform Bill, opposing the government’s planned repeal of the Equality and Human Rights Commission’s General Duty.

In addition to Baroness Campbell’s powerful speech a range of impassioned interventions came from all sides of the House including Baroness Thornton, Baroness Lister, Baroness Hollis, Lord Lloyd, Baroness Hussein-Ece and Lord Morris. Each pointed out the critical importance of both aspirations and values in addition to rules and enforcement in achieving the cultural change required to ensure that equality and human rights principles take root in our society.

The Minister offered no new arguments in defence of the government’s position and declined the opportunity to take up proposals to come back with alternatives at a later stage, leaving Baroness Campbell with no option but to ‘test the views of the House’.

The House of Lords has made its view clear – the General Duty should not be repealed. Now it is the turn of the Commons again who could of course overturn the amendment. Labour’s support is guaranteed. It will be fascinating to see how the Liberal Democrat Minister Jo Swinson MP, who is leading the Bill in the Commons, responds to the clear and unambiguous will of her colleagues in the Lords.

The EHRC itself had issued an 11^th hour briefing in which it backtracked on its previous position of ambivalence by proposing that rather than be repealed a new General Duty could be inserted. Baroness Onara O’Neill, Chair of the EHRC and who had up until today made it known that she was absenting herself from debates over the Bill in order to avoid any perceived conflict of interest somewhat surprisingly took the opportunity to speak in the debate (and vote) in support of the government’s position. The EHRC’s actions in the past week certainly put a question mark over its de facto independence from government. In addition to its intervention over repeal of the General Duty, the Commission helped bolster the government’s opposition to using the opportunity of the Bill to include caste discrimination as a protected characteristic in the Equality Act 2010 by agreeing last week to review the case for such a measure. This is despite the Commission having previously had an established policy of supporting its inclusion on grounds of existing evidence. Fortunately the government was also defeated in this point in the Lords this evening.

Of course, the EHRC’s new Chair and Board may have arrived at their own independent conclusions on the above matters (assuming the new Board has had the opportunity to discuss these changes in past policy) and independence from government should not be confused with perpetual opposition to it, but perceptions matter as much as reality in gaining the very thing Baroness O’Neill has spent her career promoting: trust.

EHRC reform - don't compare an apple with a pear

Mon, 04 Mar 2013 11:31:02 +0100

This afternoon Members of the House of Lords will debate reforms to the Equality and Human Rights Commission. Baroness Campbell has tabled an amendment opposing the government’s proposal to repeal the 'General Duty' of the EHRC on grounds that doing so will fundamentally change the purpose, role and scope for independent action by the organisation. The General Duty says that the EHRC ‘shall discharge its functions with a view to encouraging and supporting a society in which:

people's ability to achieve their potential is not limited by prejudice or discrimination, there is respect for and protection of each individual's human rights, there is respect for the dignity and worth of each individual, each individual has an equal opportunity to participate in society, and there is mutual respect between groups based on understanding and valuing of diversity and on shared respect for equality and human rights'

These are aims which unify equality and human rights in a single vision and which make clear that the Commission’s role extends beyond law enforcement to seeking to help foster progressive cultural change in society.

The weekend's newspaper headlines trailing Conservative plans to withdraw from the European Convention on Human Rights were a potent reminder why Britain needs a strong independent champion for human rights. The planned reform to the Commission's General Duty will undermine its ability to perform this role, making it a servant of Government policy, not the independent watchdog it needs to be as a national human rights institution.

They are also a reminder why, when facing reforms to its powers, when in the midst of negotiating line by line its budget, and when faced with the threat of further reforms or even abolition by a government that is no friend to equality and human rights, its own briefings to Parliament should be regarded with caution.

Having up until this point taken an ambivalent stance on the question of its General Duty (indicating that it makes no practical difference to what it can do on a day to day basis - something which Ministers in both Houses have quoted and which begs the question, why bother then?) the Commission issued an 11^th hour briefing last week suggesting that the existing General Duty might be replaced and a new one based upon the ‘government's stated view’ of the Commission as ‘the national expert on equality and human rights and the strategic regulator for equality.'

It is unclear whether the Government backs this idea, or whether other Peers will view it positively. But in the event that it might be viewed as a pragmatic third way worthy of consideration it is worth noting that:

· It is a description, not a duty or an aim, and it provides no direction to the organisation

· It creates dis-unity between the Commission's equality and human rights mandate

· It does not clarify that the EHRC’s role extends to promoting equality and human rights beyond the confines of current law, and as such risks weakening its independence

· It incorrectly implies the Commission has no ‘regulatory role’ in relation to human rights, yet the EHRC has a duty to encourage compliance by public authorities with the Human Rights Act as well as the Equality Act and has human rights enforcement powers

· It offers a description of the EHRC’s role as an ‘equality regulator’ which the government itself has abandoned in favour of ‘a strategic enforcer of the law and guardian of legal rights’

The EHRC has proposed that an apple takes the place of a pear. A comparison cannot be made because the present General Duty and EHRC’s proposal serve entirely different functions. If there is to be a different General Duty – and the case hasn’t been made as to why that is necessary – then EHRC’s proposal is not a worthy contender.

On disability rights, we shouldn't let a serious crisis go to waste

Mon, 25 Feb 2013 12:43:49 +0100

‘we are about to witness the first steps of the dismantling of our dreams of an independent future for all disabled people. The question we need to ask is how did this happen?’

Mike Oliver, Welfare and the wisdom of the past, Disability Now, February 2013

The brilliance of the social model of disability was always also its inherent weakness: its simplicity.

It was and is too easily read as suggesting that all of the factors excluding disabled people from equal participation in society are extrinsic, and that it is these extrinsic ‘barriers’ alone which give rise to the need for social security benefits or care. Hence it suggested that by simply ‘opening the door’, disabled people would be able to pass through it. This in turn suggested that as legislation or policy was implemented to address such barriers, there should be a corresponding reduction in the need by disabled people for social security benefits or care. Unsurprisingly the advent and expansion of the Disability Discrimination Act (now the Equality Act) was prayed in aid of welfare reform.

To some degree of course this should be precisely the effect of initiatives which remove barriers to education, employment, to goods and services and which foster greater inclusion. There should be fewer people experiencing exclusion (or the same degree of exclusion) and hence less of a need to compensate people for the consequences of their exclusion from society. The recent report from the Office for Disability Issues ‘fulfilling potential – building our understanding’ provides a useful analysis across a range of social and economic indicators of how well Britain is doing to these ends.

But no matter what progress is made in this regard, not all barriers are extrinsic, and some people will continue to require practical support and assistance to take advantage of a more barrier-free and less discriminatory society – in order to pass through the ‘open door’. The disabled people’s Independent Living Movement was based upon this understanding and its goals have been not only to remove extrinsic barriers, but equally to secure the financial and personal support some people continue to require to exert control over their lives and to participate socially and economically.

In recent years however ‘independent living’ has converged with ‘personalisation’. Personalisation has helped drive reforms in relation to the ‘form’ public services take, allowing individuals to take money in lieu of services, or to take charge of a personal budget to ‘self-direct’ their own support. Through doing so it has enhanced the autonomy of many disabled people and increased their opportunity to participate in society. Yet personalisation has done little to transform the primary ‘function’ of Britain’s welfare state, which continues to exist (and be understood to exist) primarily as a ‘safety net’ not as a short-term or on-going ‘social investment’ in people’s independence and capabilities.

This problem is not confined to Europe - as a recent report of the US National Disability Council put it “public policy remains entrenched in the 1960s-era all-or-nothing approach to serving people with disabilities, in which a person must demonstrate inability to be productive to be deemed eligible for critically important supports.” Nor is it confined to the support disabled people require. Patrick Diamond and Guy Lodge recently explore this challenge with a particular focus on childcare and social care in their book ‘European Welfare States after the Crisis’.

The collective failure to have addressed this fundamental problem is and remains the fault-line in the UK’s approach to disability rights. It has left us with objectives, policy and associated rhetoric which points in opposite directions – towards the idea of disabled people as either capable of equality or deserving recipients of State welfare. There is little evidence of a middle-ground in which disabled people (including those with long term health conditions) are deemed worthy of the State support which will support their participation and opportunities.

Hence welfare reform and spending cuts are not generally challenged for or reported as undermining participation and opportunity, but rather as ‘an attack on the most vulnerable’ or as addressing the ‘benefits culture’ depending on one’s viewpoint. What both perspectives have in common is to view such spending as ultimately without wider social or economic value, thus making the case to cut expenditure – especially in a time of economic crisis – far easier than might otherwise be the case. The misleading headline of today’s article in the Sun newspaper regarding Disability Living Allowance is a case in point ‘One more on sick every 10 minutes as claims for ‘easy’ disability handouts soar.’

In recent years, organisations of and for disabled people have not done enough to prevent this in their analysis and their campaigns regarding the cuts which have tended to attach equal value to all aspects of State welfare (such as arguing incorrectly here for example that incapacity benefit was derivative of the social model of disability). As a consequence, we are witnessing history repeating itself.

In 1990, Mike Oliver, who gave academic voice to the social model of disability commented that: “It is perhaps ironic that many of us spent the 1970s criticising the welfare state, only to find that these arguments were built upon and taken much further by a government determined to reduce state expenditure. Consequently we spent the 1980s defending what we had previously attacked. In sum, we defended the indefensible and I do not propose to spend the 1990s doing the same. ” Yet in 2013 that is precisely what many people are doing in not distinguishing between those parts of the welfare state which are essential to supporting independence and participation and those which exist – legitimately perhaps – as only a ‘safety net’. This problem is compounded by the lack of a visible campaign from any disabled persons organisation for the right to work, or of disabled people’s apparent absence from campaigns regarding in-work poverty (which effects large numbers of disabled people in employment and acts as a financial disincentive to leave out of work benefits) such as those for a ‘living wage’. The unfortunate impression given is of disabled people prioritising the right not to work which in the current environment plays straight into the deeply unpleasant but frighteningly successful ‘shirkers’ narrative. This in turn further undermines the case for enabling benefits and supports.

Mike Oliver himself is also – in my view – now missing the point when he argues that the challenges faced today are a consequence of ‘successive governments (since 1997) who have not just been ideologically committed to dismantling the state in all its forms, but who have been determined to put these ideas into practice’ arguing that direct payments helped create the ‘slippery slope’ which got us here. While the State undoubtedly now plays a much reduced role in the direct delivery of public services, it is worth reminding ourselves that over the period from 1997 to 2010 – including the financial crisis – the UK had the largest increase in public spending across 28 industrial nations for which comparable data is available (source: IFS 2010). State retrenchment during that period related to its decreased role in delivery, not to spending (although increased spending was unevenly distributed and local authority social care spending did not fare well). Spending on Disability Living Allowance increased by 62% across the period 1997–98 to 2010–11, from £5.0 billion to £8.1 billion in real terms, as numbers in receipt grew from around 1.4 million to around 2.2 million (something that, contrary to the analysis of the Mail and the Sun, should be seen as a success story in empowering hundreds of thousands of disabled people to take part in British society). Prior to the financial crisis of 2008 the Conservative Party in opposition was committed to Labour’s future spending plans. None of this really supports Oliver’s argument.

The threat faced by disabled people today stems principally from the financial crisis of 2007-8 and from the economic policies followed by the Coalition government since 2010 to reduce the fiscal deficit. But it is made worse by our failure to have pursued – in alliance with others – the more enabling State which may have both made disabled people far more resilient in the face of the cuts and which would have changed the way the impact of cuts would be perceived and the politics surrounding them. Instead the cuts are being made on the basis of the continued argument that independence and equality are at opposite ends of the spectrum from receiving financial assistance and support from the State. This perspective has left disabled people far more vulnerable than might otherwise have been the case.

The real question now is not how we got here, but where do we go next. Unlike Oliver I don’t believe it is too late to pursue a different course (as I have previously argued). To move forwards disabled people and their organisations have to now take possession of the debate and articulate a different welfare state which focuses upon support for participation. Disabled people themselves should be using this focus to debate and propose the course of reforms and spending decisions for the future, not leaving the task to Whitehall and local councils alone. This is a difficult ask which some will no doubt cast as complicity. But ‘nothing about us without us’ can’t only apply to positive decisions and one thing is for sure: with 80% of cuts yet to come we ain’t seen nothing yet. Whichever Party wins the 2015 General Election, ‘austerity’ isn’t going to go away any time soon. Allowing these cuts to proceed on the basis that they have been will be disastrous for current and future generations of disabled people. As Baroness Jane Campbell recently remarked ‘disabled people are the best problem solvers.’ By way of example I was recently told of a Centre for Independent Living in the Midlands which identified that £1 million savings could be made by its local council, not by cutting provision but by moving from monthly to annual monitoring of direct payments.

I have no doubt that the road ahead will be very bleak. But to suggest as Oliver does that disabled people are reaping ‘the whirlwind of our distorted ideas and betrayed dreams’ is a curious mix of claiming victim status while crapping on one's own doorstep. Disability rights has made enormous progress in the UK over the past two decades but there was a major gap in our approach, which failed to create a consistent disability rights agenda because it promoted equal rights on the one hand and defended the post-War welfare state approach to disability as a category of need on the other. This gap was already becoming very apparent before the financial crisis as the positive effects of anti-discrimination law reached their limits , but has been dramatically exposed by the programme of public spending cuts.

President Obama's first Chief of Staff Rahm Emmanuel famously said 'You never want a serious crisis to go to waste. And what I mean by that is an opportunity to do things you think you could not do before.' I remain optimistic that we might be able to harness these difficult times to lay the foundations for the reforms to the way disabled people are supported that have thus far eluded us and through doing so we might see some light at the end of the tunnel. Campaigning for an Independent Living Act would be a good start.

Independent living in a time of austerity - a problem or a solution?

Mon, 04 Feb 2013 10:43:33 +0100

Introduction – independent living in a time of austerity

We start with an apparent dichotomy – the demand to advance disabled people’s right to independent living yet having to do so in the context both of the financial climate we are in and increasing demand for ever more scarce resources as we all live longer lives.

Many of us may disagree with the economic and other policies of the Government in Westminster and their impact at local level – that they are cutting too far, too fast, or that the cost of deficit reduction is being disproportionately borne by the poorest in society.

Disability organisations and their allies are of course correct to resist and challenge cuts and to highlight their impact. But we are merely sticking our heads in the sand if we avoid confronting the reality that the overall envelope is and will continue to be much reduced for the next decade at least, no matter which Party (or Parties) is in power at Westminster. Even when the economic climate improves, our ageing society will place major new demands on the public finances.

But what if we were to start with the idea that the real dichotomy is between the old way of doing things and the economic and demographic pressures we face. That far from being a problem, independent living as a way forward offers a much needed solution?

What is independent living?

First, we need to clarify what we think we mean by independent living.

Too often we think about independent living solely as being about the nature of the transactional relationship between an individual and public services. As a consequence when we think about independent living as a human right, we think of rights to services and support or how they are organised.

The clue to this mistake is in the words.

It is about ‘living’, not services. Independent living is a state of being and doing – a freedom.

The UN Convention helps us make sense of it in these terms. Article 19 of the Convention places obligations on States to take measures to ensure that disabled people enjoy their equal right to live in the community, with choices equal to others

· It situates the Convention’s general principle of promoting autonomy and self-determination in the context of disabled people’s right to choose where and with who to live

· It is about liberty, with particular regard to not being forced to live in an institution of any kind

· And it is about inclusion and full participation in the community

Teodor Mladenov from Kings College London argues that the notion of “being-in-the-world” provides the most fruitful point of departure in disclosing the full scope of the CRPD’s meaning and significance and that the perspective informed by this notion does not undermine agency — rather, it highlights the social and material conditions that make agency possible.[1]

It is the freedom for a person to interact with and within their community on equal terms, for it is that interaction that sustains inclusion, prevents isolation, and though which our will and preferences can find expression.

The legal academic Colm O’Cinneide has noted that ‘The vision of rights embodied in the (disability) Convention is thus based upon the recognition that individuals with disabilities are not self-sufficient monist entities, but rather depend upon collective social action to make provision for their basic rights. The Convention therefore articulates a very different vision of rights from that embedded in the US Constitution, for example, where individual rights are primarily conceived as imposing negative constraints upon the state in order to maximise individual autonomy’ [2](O’Cinneide, 2009, p. 164).

Similarly, Arnardóttir and Quinn (2009) argue that ‘In truth, all persons (whether disabled or not) depend on social supports at least at some point in their lives (especially when young or at the onset of old age) to make freedom and choice a reality. This underlying reality is simply more obvious in the case of persons with disabilities (though not for all of them). If one sought tangible proof of the interconnectedness of both sets of rights [i.e., civil and political, on the one hand, and economic, social and cultural, on the other] then disability is the obvious example. It is plainly not enough to enact anti-discrimination laws to break down arbitrary barriers. It is also necessary to assist people in getting past those barriers. The deeper paradox — one that obtains for all persons — is that personal freedom ultimately relies on social solidarity’[3]

The Convention therefore advances a very different concept of autonomy and independence from that which can be found in much human rights law, or popular philosophy which underpins much public policy here and in Europe.

It is about the relational self, not the atomised self. It bridges the gap between human rights thinking on the one hand, and the human condition on the other. We are none of us truly independent, we are interdependent.

I would argue that by starting with this perspective we will be led to some quite different solutions and we will find ourselves challenging existing ones.

Personalisation is not the same as independent living

At present public policy regarding independent living typically limits itself to the transactional relationship between the individual and public services. This is because independent living has for the past decade been hitching a ride with personalisation and the promotion of choice in public services. There have undoubtedly been positive benefits of this shared journey but it is and can only ever be a means to the end and as such only a part – albeit an important part – of what is required to protect, promote and ensure disabled people’s right to independent living.

Firstly of course it is only available to those declining numbers who are assessed as eligible for support.

Second, these developments have done nothing fundamentally change the underlying assumptions regarding the case for social security and public service support and the rules regarding their allocation both in practice and in public discourse. They have confined themselves to ‘form’ without addressing ‘function’. As a consequence they continue to be based upon a ‘deficit model’ of disability with eligibility focused upon compensating lack of agency, not identifying the support necessary to facilitate agency and inclusion.

This is far from being an exclusively British problem. As a recent report of the US National Disability Council put it “public policy remains entrenched in the 1960s-era all-or-nothing approach to serving people with disabilities, in which a person must demonstrate inability to be productive to be deemed eligible for critically important supports.”

And thirdly, these approaches centre entirely on the individual and so rely on the individuated notion of autonomy and agency that the UN Convention challenges. As a consequence this approach has failed to address inequalities in the capacities of different people to exercise agency and doesn’t generally seek to explore how autonomy and inclusion can be augmented and sustained through action to knit people into their communities. The Scottish Self-Directed Support Act 2013 is interesting to these ends, including as it does a general principle that the person’s right to participate in the life of the community in which the person lives is to be respected. This recognises that participation and inclusion are not simply the ends of independent living, they are central to the means by which independent living is realised and sustained.

The results of this general gap in thinking and approach include the unequal distribution of the benefits of personalisation, people living geographically in the community but without meaningful social contact, given life and limb support but not the support to participate in social and economic life, and ever more dependent on diminishing statutory services rather than drawing on naturally occurring supports around them.

This is not the fault of personalisation, it is the failure to develop it and to recognise its limitations.

Refreshing the independent living agenda

So how might we move forward? I propose action across three areas in particular:

· We require much deeper reforms to public services and to parts of our social security system

· We need to develop what I call the choice and control architecture

· And we need a new strong focus on creating the infrastructure and the ecosystems of support which helps embed people in their communities

At each level disabled people’s participation must be regarded as the engine and the marker of progress.

Reforming public services to build on assets, promote innovation and remove red-tape

On public service and social security reform, we need to develop an asset-based approach to the targeting and distribution of resources, focused above all else on addressing the barriers people face in taking charge of their own lives and in participating socially and economically. This should include short-term targeted support as well as life-long assistance.

I believe by doing so we will be able to make better decisions about where to invest and where to achieve savings through a clearer sense of the impact such decisions are likely to have both for individuals and the wider community and economy. The task of determining eligibility should involve disabled people, both through self-directed and peer assessment and be based on a holistic appraisal of the barriers individuals face. We must call time on hired medics making dubious functional assessments to achieve targets.

Disabled people seeking or receiving support frequently face more red-tape than the average small business. There is no justification for this level of red-tape at a time when people are losing the support they require just to get up in the morning, to clean and to eat. So a progressive disability rights agenda will focus on removing unnecessary bureaucracy. I was recently told of a centre for independent living which, working with their local council, identified £1 million of savings by moving from monthly to annual monitoring of direct payments.

Related to this, so many decisions which pertain to the ‘risks’ faced by disabled people are in fact driven by the fear of liability among public authorities. We need a grown up debate about how to end this liability culture which perverts decision-making, constrains disabled people’s rights and which adds needless costs and bureaucracy. We need to be guided by the idea of the ‘dignity of risk’ – that risk is the essence of life, that with autonomy and responsibility comes risk and that things sometimes go wrong.

We need to release the cap on innovation. The true potential of self-directed support lies in the opportunity of individuals to creatively achieve their aspirations outside of traditional service models: The carer who used a direct-payment which she had been given to buy respite from caring for her husband to purchase a season ticket for someone to support him to watch his favourite football team; The man with mental health problems who used his direct payment to hire an actor to help him manage anxiety during job-interviews, who went on to get a job.

Rather than government and public bodies commissioning services against detailed specifications, they should act as the ‘venture state’, seeking out promising approaches with the potential for high social returns and investing in them. Disabled people should be centrally involved in the commissioning process.

Developing choice and control architecture

If more people are to be in charge of their own lives we need to put in place the supports which help people navigate that path. This ‘choice and control architecture’ should include three elements: information and advice, supported decision-making, and consumer protection.

Disabled people’s user-led organisations are ideally placed to provide expert information, advice and peer support and should be supported to do so, both through public investment and supporting such organisations to become cooperatives or mutuals if they so wish.

Though the Mental Capacity Act in England and Wales marked significant progress it is still focused on adjudicating one-off problems rather than promoting supported decision-making across the life-course. Such an approach tends not to probe deeper into why decision-making deficits exist and whether concerted social action might be taken to mitigate them, or to explore the individual or social assets that might be harnessed or augmented to enable people to remain in charge of their own lives. The model of representation agreements in British Columbia or the approach envisaged in the Indian Disability Rights Bill focus on identifying and kindling support networks for enhancing capacity and we should learn from them. On-line communities forged through social media are becoming a major source of information and mutual support among disabled people and their allies and clearly offer opportunities to augment people’s decision-making capacities.

Our regulatory approach has not kept pace and requires further reform – personalised support requires personalised regulation. We should be thinking about consumer protection models, which create both empowered citizens and consumers and which can investigate and deal with complaints when things go wrong.

Building inclusive communities

Finally, we need to develop approaches and tools which help create more inclusive communities. An asset-based approach needs to extend beyond the individual to encompass the harnessing of assets or potential assets in the world around them.

If we recognise that all of our lives are sustained - of let down by - the infrastructure and ecosystem of support around us it tells us that people’s exclusion derives from the failure of that infrastructure or absence or breakdown of their ecosystem of support

Of particular relevance is the degree of social connectedness – the challenge a young adult with a learning disability may face in establishing one, the fact that with age we too often see those connections erode. Building inclusion then is the business of re-building that connectedness, fixing the infrastructure and tending to the ecosystem.

Genuine social inclusion demands efforts to knit people into ordinary community supports such as via ‘circles of support’ or through initiatives such as ‘Shared Lives’ via which disabled adults come to live with a family rather than move into supported living or residential care. The ‘Think Local, Act Personal’ initiative is focusing on ‘building community capacity’ to these ends, while in Scotland there is increasing interest in ‘asset-based approaches’. Business can play a critical role in building community capacity, such as the ‘Safe in Doncaster’ (S.I.D.) initiative, via which shops and café’s sign up to offer sanctuary to adults with learning disabilities who believe themselves to be experiencing or at threat of abuse or hate crime.

We have come some distance in the area of accessibility and inclusive design, but have we come far enough? Many parts of our built and travelling environment remain out of bounds to disabled people. It would help to understand why it is that some towns, cities and transport systems have become far more accessible than others, and address implementation gaps, not just grab for further law and regulation. As far as I am aware, such analysis has not been conducted and hence implementation not benefited from such insight – a clear gap to be filled.

To legislate or not to legislate?

Much of what I have outlined isn’t about new laws, regulation or more services but about ensuring existing law and regulation is implemented, changing practices and culture, getting rid of waste, releasing innovation and removing the things that stand in the way.

I am though sceptical as to whether it can realistically happen without the nudge of law. Certainly that was the conclusion of the Joint Parliamentary Committee on Human Rights followings its inquiry into disabled people’s right to independent living.

That’s why in England I’m planning to work with others to develop proposals for an Independent Living Bill as a vehicle for implementing Article 19 of the UNCRPD. One initial idea is for a duty on national and local government and other prescribed public authorities to have due regard to the right of disabled people to live independently and to be included in the community and to require them to involve disabled people in the manner by which they discharge that duty.

The Bill would clarify a bottom line for national and local government, while requiring them to work collaboratively with disabled people and the wider community to develop and sustain the conditions which enable the right to become a lived reality.

It may take law to make it happen, but I genuinely believe that looked at this way, independent living can provide a sustainable path to the future for disability rights.

[1] Mladenov, T (2012) The UN Convention on the rights of persons with disabilities and its interpretation ALTER, European Journal of Disability Research

[2] O’Cinneide, C. (2009). Extracting protection for the rights of persons with disabilities from human rights frameworks: Established limits and new possibilities. In O. M. Arnardóttir, & G. Quinn (Eds.), The UN Convention on the rights of persons with disabilities: European and Scandinavian Perspectives (pp. 163–198).

[3] Arnardóttir, O. M., & Quinn, G. (2009). The UN Convention on the rights of persons with disabilities: European and Scandinavian perspectives.