The campaign for authentic love and the right to sleep starts here….

Another brilliant blog post from Mark Neary today on the right to sleep, not to minor respite from extreme and persistent exhaustion.    Imagine if you will, those of you who are parents, that the sleep patterns of the first few weeks of your child’s life continued in perpetuity.  That’s a reality for many people supporting family members in Britain.

As usual Mark’s personal accounts expose the dishonest, patronising and frankly abusive bullshit not just of national and local government and our politicians, but of many charities who profess to exist to advance the interests of disabled people and their families.

Informal care-giving is over celebrated and massively unsustainably over-relied on.  Yet so twisted has the public narrative around care become that those allegedly standing up for ‘family carers’ frame common experiences such as a level of sleep deprivation that would shame the interrogators at CIA blackspots, people being unable to hold down their job and living in poverty as a consequence, people suffering isolation, stress and depression, family breakdown, child labour and a situation putting not only those providing support but those receiving it at risk not as a national scandal, but as a heroic, irreplaceable £119 Billion ‘saving’ to the State.  One charity’s big answer to this is to encourage ‘carers’ to make sure they have a good breakfast…

Without a change in the narrative, this over-reliance is set only to become greater.   Public spending cuts are squeezing services while demand is growing exponentially, due both to our ageing society and increasing numbers of disabled people with so called ‘complex needs’ reaching adulthood.   Who or what is going to fill this ever yawning gap?

Our starting point has, I believe, to be an abandonment of the ‘carers’ & ‘cared for’ labels.  We need instead to talk about and focus on people’s right to good, authentic and sustainable relationships as a matter of equality and human rights.    My thinking here is influenced by a piece I read by the Swedish Historian Lars Tragardh regarding the ethic underpinning the Swedish Welfare State:

‘…authentic human relationships are possible only between autonomous and equal individuals. in Sweden this ethos informs society as a whole. Despite its traditional image as a collectivist social democracy, comparative data from the World Values Survey suggests that Sweden is the most individualistic society in the world. Individual taxation of spouses has promoted female labour participation; universal daycare makes it possible for all parents – read women – to work; student loans are offered to everyone without means-testing; a strong emphasis on children’s rights have given children a more independent status; the elderly do not depend on the goodwill of children.’

British public policy it could be argued relies upon inauthentic human relationships.  That is not to say people in relationships of support would not otherwise be in these relationships at all, but rather that the nature and scope of the relationships they are in are not ones they would choose, imposing both dependency and burden, undermining the self-determination and well-being of all affected, however much people love one another.

A common objective should then be to dismiss the labels of ‘carers’ and ‘cared for’ and the false metaphors of the good Samaritan and burdensome dependent that these titles invoke.    People in relationships of support and their advocate organisations have a common interest in coming together to campaign for the right to a good, authentic family life – the right to be husbands and wives, parents and children, partners, sons and daughters, brothers and sisters….Public resources should be marshaled in support of nurturing and sustaining (not replacing, or subverting) these natural relationships.

Until that happens there will continue to be many more sleepless nights.

On disability hate crime we need a strategy for prevention

Good, albeit depressing, to hear BBC 5 Live devote an hour to disability hate crime, with ex Director of Public Prosecutions, Sir Ken McDonald, essentially repeating messages about institutional failure in the criminal justice system that he first made in a speech in 2008.

There has been steady, albeit uneven, progress on recording of disability hate crime by the police since then (often misreported as an increase in the incidence of disability hate crime itself).   But there continues to exist a yawning gap between estimated incidence of such crime (at around 72000 per year) and that reported to/recorded by the police with only around 2.5% (1841) of all incidents recorded in 2012-13.  Of these, less than 1% were prosecuted.

Increasing the levels of reporting, recording and prosecution must therefore remain a central objective in the battle against the hostility encountered by disabled people.  But to rather subvert the title of Katherine Quarmby’s book on the topic of disability hate crime, there is a risk that by only focusing on criminal justice, other institutions and wider society can scapegoat the police and Crown Prosecution Service.  Such hostility may sometimes amount to a criminal matter, but its roots are deeply embedded in prejudices which can be found in all areas and at all levels of society.  The vast majority of this will not be uprooted by the actions of the police and prosecutors who are, after all, dealing with symptoms, not the causes (though as Katherine Quarmby rightly points out, we are still in the dark as to what the motivations of those who commit such crimes actually are due to lack of research).

To these ends a much under-utilised legal tool is s149 (5) of the Equality Act 2010 – the section of the Public Sector Equality Duty which requires public authorities to have ‘due regard to the need to foster good relations between persons who share a relevant protected characteristic and persons who do not share it involves having due regard, in particular, to the need to— (a) tackle prejudice, and (b)promote understanding.’

The Public Sector Equality Duty replaced the Disability Equality Duty (DED) which contained an explicit duty on all public bodies to ‘eliminate harassment’ and to ‘promote positive attitudes towards disabled people.’  During the Equality Act’s progress through Parliament, assurances were given that the new ‘good relations’ duty should have the same effect as the previous strands of the DED and that in particular ‘tackling prejudice’ should be regarded as tackling its manifestations including hostility and harassment. Indeed, the Explanatory Notes include the following example to explain what the duty might entail ‘The duty could lead a school to review its anti-bullying strategy to ensure that it addresses the issue of homophobic bullying, with the aim of fostering good relations, and in particular tackling prejudice against gay and lesbian people.’

The DED was the reason the EHRC’s inquiry into the issues focused on ‘disability related harassment’ rather than ‘disability hate crime’ – the duty has a far broader and deeper application than s146 of the Criminal Justice Act, and while encompassing the police and prosecutors, it also applies to government departments such as the DWP, local councils, educational establishments, regulators of the media and others.

The criminal justice system must not be let of the hook.  But if we are serious about giving people the freedom of a more safe and secure life, then a strategy focusing on preventing hostility and tackling prejudice towards disabled people, underpinned by s149 of the Equality Act 2010, is what’s urgently required.

It’s like déjà vu all over again

Fascinating to find such contemporary relevance in an account of the exchange between the Union of the Physically Handicapped Against Segregation (UPIAS) and the then newly minted Disability Alliance from 1975, with the latter standing accused by the former of undermining inclusion by focusing too narrowly on benefits income.    I’ve copy and pasted some key extracts below but for those with an hour to spare you can read the full, seminal document here

Interestingly the position of UPIAS is to advocate for what might now be termed welfare to work and strongly against anything which fostered dependency among disabled people on ‘State Charity':

‘”Benefits” which are not carefully related to the struggle for integrated employment and active social participation will constantly be used to justify our dependence and exclusion from the mainstream of life the very opposite of what is intended. This is why the Alliance’s appeal to the state for legislation to implement a comprehensive, national disability incomes scheme is in reality nothing so much as a programme to obtain and maintain In perpetuity the historical dependence of physically impaired people on charity. It does not even have the merit of revealing to the public it wishes to educate that its incomes policy is really a form of State Charity that is, help which essentially entrenches our dependence on the state instead of encouraging our independence and active participation in the mainstream of life. The Alliance’s appeal to the public on our behalf is still the same old appeal to pity, the begging bowl in modern form. A hundred years ago such an appeal for state rather than personal or voluntary charity might have made some sense. But today, when technological and social changes have radically altered the possibilities for us to take independent control over our own lives, to continue to stress our incapacity and helplessness is to bind us with more chains instead of emancipating us. What we really need is to be helped to make our maximum active. contribution to society as full members.’

And UPIAS go onto warn how any assessment process based around the degree of impairment actively encourages disabled people to play down their abilities and to become more dependent:

‘…..we find that by also ignoring the social cause of disability, and therefore the need to bring about integrative social change, the Alliance encourages us to see our oppression as a matter for detailed negotiation. Their narrow proposals immediately create for us a vested financial interest in claiming what becomes our main asset “disability”. In addition, since the amount of charity will be determined by the degrees of disability, physically impaired people will also have a vested interest in playing down our abilities. The best financial contribution we could make to our families would be to become, or pretend to become, more dependent.’

UPIAS foresaw that this would place the State in conflict with disabled people over the determinants of who is or is not eligible for ‘handouts':

‘The State, of course, will automatically be in conflict with us for it will seek to limit its handouts, otherwise there would be no one at work. State Charity, therefore, creates a conflict of interests between the State and its social administrators on the one hand and physically’ impaired people on the other. Thus the Alliance logically sees the need to establish objective criteria which would enable the State’s social administrators to determine the “degree of disability” and to exclude the malingerers from benefit. A whole new generation of researchers and testers will be created to administer the incomes policy of the Alliance. ‘

Moreover, UPIAS correctly predicted the age of Atos:

‘The scene facing every physically impaired person, then, is of an army of “experts” sitting on panels which are set up all over the country. These “experts”, armed with the latest definitions and tests for measuring, will prod and probe into the intimate details of our lives. They will bear down on us with batteries of questions, and wielding their tape measures will attempt to tie down the last remaining vestige of our privacy and dignity as human beings. To calculate the “degree of disability” they will be forced to snoop and spy. How else could they decide whether a physically impaired person dresses her/himself, for example, or is helped? Just to test this simple act would require considerable investigation to make sure the person was not “malingering” (or, what would inevitably be the new jargon, “dress-lazy”). It should take physically impaired people little imagination to see where all this leads. Every single act would have to be performed in front of a panel while they measure and pry. Already the details are being worked out, the definitions constructed, criticised and reconstructed. The hated means-testing would seem like a formula for privacy compared to the Alliance’s proposals for assessing “degree of disability”.’

And UPIAS also correctly identified the impact that this could have on the status and psychology of disabled people:

‘Thus in practice the Alliance’s assessment plans, developed logically from the narrow incomes approach, can be seen to increase the isolation and oppression of physically impaired people. We would be required to sit alone under observation on one side of the table, while facing us on the other side, social administrators would sit together in panels. We would be passive, nervous, deferential, careful not to upset the panel: in short, showing all the psychological attributes commonly associated with disability’

Of course in the intervening period came developments such as Disability Living Allowance, the Direct Payments Act, the Disability Discrimination Act, the Equality Act and so on, each of which made some inroads into developing the framework for inclusion that UPIAS advocated.  Yet fundamentally it seems that, 40 years on, much of UPIAS warned against has come to be, entrenching rather than overcoming dependency.

Reform of the benefits system followed the Disability Alliance path, not the UPIAS one.  And today, mired in austerity, the political and philosophical division between those focused on income security and those pursuing inclusion is, sadly, alive and well.   

Is it time to revisit the discussion?

Why campaigning for the right to work and employment should be a priority

The welfare reform debate is confined to a single question: which Party can make it most difficult to get onto and stay on social security benefits.   And because successive governments have struggled to develop programmes which genuinely help people into employment, the focus of welfare reform has increasingly become one of making access to social security as frustratingly complex and insecure as possible and of managing individual behaviours within a scheme of required activities and punitive sanctions for non-compliance, such that people who fail can have their benefits justifiably cut.   So toxic is the debate surrounding welfare reform that anything which deflects from this core goal merely bounces off, attacked as celebrating a ‘something for nothing culture.’   There is simply no space for alternative ideas to breathe.

This is why welfare reform does not then offer a viable political or practical vehicle through which to anticipate improving the living standards of disabled people and people with long term health conditions in the immediate term.  Sure, defending against further regressive cuts may be important, but focusing all campaigning efforts on the benefits system is a strategic and tactical mistake.  Not only is doing so largely futile in this political environment, it also ignores where the real opportunity to improve living standards and opportunities lies.  We need to campaign outside of this space.

The strange thing about the years since the financial crash of 2008 is that unemployment didn’t rise to anything like the levels of previous economic downturns.  Disabled people’s employment was not disproportionately affected by the downturn either.  And now employment is growing as the economy begins to recover.  Disabled people and people with long term health conditions should benefit from this recovery.  This is why if campaigners genuinely want to tackle poverty and ensure an adequate standard of living for disabled people and people with long term health conditions they will use the occasion of the 20th anniversary of the Disability Discrimination Act next year to launch a major campaign on the right to work and employment

‘But…..’ I can already hear people saying ‘….what of those who cannot work?’  Well, bear with me and I will explain why my proposal is designed genuinely to ensure ‘work for those who can, security for those who cannot.’

The right to work and employment is entirely different to an obligation to engage in ‘work focused activity’ as a condition of receiving benefits.   Campaigning for people to have opportunities for work and employment is not the same as campaigning for people to be made to do work.   A focus on the right to work and employment places the emphasis on addressing the factors which deny people opportunities to do so, like the availability of suitable jobs, discrimination, access to education and training and critically the nature of work itself and how accommodating this can be to people requiring atypical working arrangements.  

The opportunity here is not only to pinpoint these barriers and to generate new momentum to secure their removal, but in doing so to also expose the distance which continues to exist between many people and a real prospect of sustainable employment.   This in turn offers the prospect of exposing the blunt ineffectiveness of the Work Capability Assessment, the uselessness of the Work Programme and the unreasonableness of the increasingly punitive conditions and sanctions faced by those who are excluded from the labour market through no fault of their own.  It allows us to demonstrate that unemployment is not a matter of individual failure, but of systemic failure.  Yet unlike many recent campaigns against welfare reform, the price of doing so need not be the deliberate lowering of expectations or of disability activists appearing to turn their backs on rights and equality.   

This is why a campaign for employment and work – entirely removed from the toxicity of welfare reform – holds the prospect of promoting both opportunity and security.  Any takers?

If there is an Inquiry by the UN Committee on the Rights of Persons with Disabilities concerning the UK…

There’s been lots of back and forth on Twitter and elsewhere regarding the rumoured Inquiry by the UN Disability Rights Committee into the UK, and in particular the confidentiality of the Inquiry procedure.

First of all, an ex Committee member Gabor Gambos announced that there was to be an Inquiry when speaking at the National University of Ireland in Galway School of Disability Law and Policy Summer School back in June.  He did not say what the Inquiry was about, only that had been launched.  The Secretariat of the UN Committee will not confirm or deny the Inquiry because it considers itself to be subject to confidentiality and presumably that confidentiality extends even to the question of whether or not an inquiry is taking place at all.  So there is no official notice that an Inquiry is taking place and no information at all in the public domain about what triggered it and and what it is to focus on.

If an Inquiry has been launched it will have been done so in accordance with Article 6 of the UNCRPD Optional Protocol.  Article 6 says that:

1. If the Committee receives reliable information indicating grave or systematic violations by a State Party of rights set forth in the Convention, the Committee shall invite that State Party to cooperate in the examination of the information and to this end submit observations with regard to the information concerned.
2. Taking into account any observations that may have been submitted by the State Party concerned as well as any other reliable information available to it, the Committee may designate one or more of its members to conduct an inquiry and to report urgently to the Committee. Where warranted and with the consent of the State Party, the inquiry may include a visit to its territory.
3. After examining the findings of such an inquiry, the Committee shall transmit these findings to the State Party concerned together with any comments and recommendations.
4. The State Party concerned shall, within six months of receiving the findings, comments and recommendations transmitted by the Committee, submit its observations to the Committee.
5. Such an inquiry shall be conducted confidentially and the cooperation of the State Party shall be sought at all stages of the proceedings.

The Optional Protocol under the UNCRPD is the same as that under the UN Convention on the Elimination of All forms of Discrimination Against Women (the only other Optional Protocol that the UK has ratified).  In relation to the UNCEDAW Optional Protocol, it has been suggested that the confidentiality rule applies only to the Committee and not to NGOs who have called for an inquiry.  However, for this to have any relevance to the rumoured CRPD inquiry into the UK it would demand that NGOs had been advised officially of an inquiry and of its focus.

It has also been suggested that ‘At the end of the six-month period upon which the State party has submitted information on the measures taken in response to the CEDAW Committee’s recommendations, the confidential part of the process has ended and the CEDAW Committee may publicize the situation and the inquiry, including the CEDAW Committee’s Report and Recommendations and the State Party’s Response.’  Indeed, the CEDAW Committee did so following an Inquiry concerning Mexico. Those interested in this inquiry and its perceived strengths and weaknesses may wish to read this interesting article. On this basis, if an inquiry has been launched we should anticipate seeing the findings of the Committee and the government’s response and any steps it has agreed to take once the Inquiry process is completed.  

So, it would appear that an NGO or individual that is in a position and willing to reveal the existence and focus of an inquiry is entitled to do so as they are not the object of the confidentiality requirements.   If nobody is in a position or willing to then anything else is merely idle speculation and any ‘joining the dots’ should be regarded with caution.

Ultimately this is a political and tactical decision for whoever it may concern.  While some may believe openness and transparency should trump all else, I would merely point out that in this febrile environment a less public process may yield far better long term results than a big hoo ha about the fact that an inquiry – the findings of which could be that no violations have taken place – may have been launched.

Many disabled people have wanted the UN to engage with policy developments in the UK. They may have succeeded if the Committee has launched an inquiry into relevant topics. I share people’s frustration that we neither know officially of an inquiry or anything of its focus, but the lessons of the past year demonstrate clearly that attacking the legitimacy of the process will simply play into the hands of government.  If there is an inquiry, let it take its course.  In the meantime, I hope again that UK DPO’s can use the extra time available now to engage with the separate examination process to work together on a single UK submission every bit as good as this one from New Zealand published this week.

 

Lies, damn lies and statistics

Eleven million people in Britain – with an estimated combined spending power of £80billion – have a disability’ claimed Mark Harper this week, as the government called on the UK tourism industry to improve its accessibility to disabled customers ‘“So, as part of our long-term economic plan, improving the accessibility of hotels and self-catering apartments and tourist attractions for disabled travellers is a no-brainer.’

Harper was relying in statistics drawn together by the Department for Work and Pensions which say: ‘There are 11.5 million people in the UK who are covered by the disability provisions set out in the Equality Act. This is 19 percent of the population – a similar level to the USA, Canada and Australia (FRS 2010/11, WHO 2011).’

As the DWP notes, these estimates are based on various survey findings and:

‘Estimates rely on self-reported responses to survey questions. These responses will be determined by the person’s understanding of the question and a range of other factors such as how they were feeling on the day they answered the question.’  

That is to say, a person may both fail to report an impairment at the time a survey is carried out and in theory at least over-state its effect.  Nevetheless, DWP go on to say that:

‘A person is defined as having an impairment if they have moderate, severe or complete difficulty with physical or mental functioning and activities are limited as a result. LOS estimates that 29 percent of the population have at least one impairment (LOS Wave 1 2009/11).’  

Given this is its own analysis, it’s unsurprising then that the DWP would have relied on these population estimates in its own Equality Impact Assessment for its policy to ‘introduce restrictions to Housing Benefit for working age customers living in the
social rented sector who are occupying a larger property than their household size requires’ known either as ‘ending the spare room subsidy’ or the ‘bedroom tax’ depending on one’s political leanings.  The Assessment finds that 63% of working age social rented sector HB claimants or their partners affected by the size criteria would be classified as disabled.

What is surprising, given these are official statistics, which the Minister for Disabled People has no compunction in relying on to make the business case to the tourism industry, is that the Secretary of State should question their validity arguing on LBC radio that:  ‘The figures you use are figures used for people’s self-declaration of their disability under the Disability Discrimination Act…..I’m not saying they’re right or they’re wrong. I simply say that’s their declaration. There’s no ongoing check. About a third are in receipt of something like DLA, which of itself is a payment to support housing costs.” 

What he may have reasonably suggested is that that not all 63% of social rented sector HB claimants tenants who are disabled and  ‘affected’ by the size criteria will necessarily be adversely affected for a reason related to their impairment or health condition because their impairment or health condition does not give rise to a specific need for additional bedrooms as per the criteria.  Rather what the Impact Assessment appears to be saying is that 63% of those to whom the policy will apply are disabled and for that reason they are affected, even if not adversely for a reason related to their disability.  

Of course, the same could be said for inaccessible UK tourism – clearly not all 11 million people covered by the disability provisions of the Equality Act experience barriers accessing UK tourism.  Yet what serves to make a powerful ‘no brainer’ business case for accessibility evidently makes for an politically unhelpful narrative for cutting social security.   

In fact Duncan Smith didn’t try to say this at all.  And no doubt he didn’t because he and his Department either don’t know or because – as with the impact of the closure of the ILF – they do know but don’t want to say what the adverse impact actual is.  Instead he queried the honesty of people when self-reporting an impairment or health condition in response to surveys included in the official statistics and he implied – misleadingly – that DLA exists to meet additional rental costs.  

All of which leaves the question that the Secretary of State was fumbling to avoid answering: how many disabled people are adversely affected by the policy, by what criteria and to what degree have the mitigating actions prevented this?

 

The right to independent living – progressive realisation or positive obligations?

AMENDED 18th August 2014

I’m currently working on guidance for National Human Rights Institutions on the rights of persons with disabilities.  I’m struggling to explain something I believe to be critically important in understanding disability rights: the unique interplay of civil and political rights with economic and social rights.  So this is a ‘testing testing, 123′ kind of blogpost and I invite comments, or should I say ‘help!’

Typically we regard civil and political rights, such as the right to life, to liberty and to a private and family life as of immediate application.  This is because – rightly or wrongly – we view these rights as being about restraint – that is, about the State or its agents refraining from acting in a way that violates them.  Human rights jurisprudence has begun to develop the notion of ‘positive obligations’ – that is, that the State has a duty to take measures to secure that a persons human rights are respected.  Doing so can incur costs, such as police training, the costs of the Courts system, holding inqests or having regard to dignity when carrying out care assessments.   Yet unlike economic and social rights – to health, to social protection and an adequate standard of living and so on – we do not in relation to upholding civil and political rights apply the doctrine of ‘progressive realisation’ whereby States only must fulfil them over time to the maximum of their available resources.

For a disabled person requiring support or assistance to eat, clothe him or herself, to go to the toilet, to get out of bed and go out of the house, rights to liberty or to a private and family life have little meaning unless (a) sufficient such support is available and (b) the person can exercise choice and control over how it is provided – where, when and in what manner – such that it facilitates their liberty and their right to private and family life.   The very real consequences of not committing resources to supporting these rights is plenary guardianship and institutionalisation at one extreme, through to a general lack of choice and control and isolation from the wider community on the other.

To these ends, Article 19 of the UNCRPD – the right to live independently and to be included in the community requires that:

‘States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.’

The Joint Parliamentary Committee on Human Rights in its report on independent living noted that Article 19 ‘gives more specific meaning to the general rights to liberty and security of person and to private and family life in the particular context of disabled people and their living arrangements.’  Yet in order to disabled people to enjoy the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and to not be obliged to live in a particular living arrangement, a sufficient range of in-home, residential and other community support services etc must be available.

So to which doctrine should Article 19 therefore be the object – progressive realisation or immediate realisation?  Or does Article 19 give rise to something else altogether? Is this why some have suggested that despite the terms of reference given to the ad hoc Committee drafting the Convention to not go beyond the existing international ‘Bill of Rights’, that Article 19 in effect amounts to a new, distinctive right? The reference to personal assistance bears no relationship to any of the existing economic and social rights for example. But it is perhaps the ultra-indivisibility of rights in Article 19 that marks the most significant departure and by doing so renders the doctrines of immediate or progressive realisation unhelpful.

So far so theoretical.  But the answer to this question has very real consequences.  In the UK, while legal and administrative steps may still be being taken to accord disabled people more control over the support they receive, austerity measures mean fewer people are being deemed eligible for support and the range of financial and practical support is in fact shrinking.  This in turn limits the scope for disabled people to exercise choice over where and with whom they live, and in particular to avoid segregation from the wider community, which in turn impedes rights to liberty and to private and family life as expressed through the concept of independent living.   The ongoing insistence of government’s, including the UK’s, to regard economic and social rights as secondary to and disconnected from civil and political rights (or to attack or dismiss the idea of them altogether as this government has done several times) risks massively undermining our ability to advance the civil and political rights of disabled people, contingent as they are on investment in rights-respecting supports (let alone people’s standalone social and economic rights to health, an adequate standard of living, housing, employment and work).   Yet the analysis above suggests that – despite requiring the investment of significant public resources – the right to live independently and to be included in the community may not rest upon economic and social rights at all, but rather rely upon a significant expansion of the doctrine of positive obligations.  And if that is the case, by what yardstick might one judge whether States are committing enough resources to respecting the right to independent living and conversely when are they in breach?

The final word here goes to Arnardóttir and Quinn (2009):

‘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’

 ADDITION 18th AUGUST 2014

Just been reading again the General Comment of the UNCRPD Committee on Article 12 and note this at para 30, which must logically also apply to Article 19:

The right to equality before the law has long been recognized as a civil and political right, with roots in the International Covenant on Civil and Political Rights. Civil and political rights attach at the moment of ratification and States parties are required to take steps to immediately realize those rights. As such, the rights provided for in article 12 apply
at the moment of ratification and are subject to immediate realization. The State obligation, provided for in article 12, paragraph 3, to provide access to support in the exercise of legal capacity is an obligation for the fulfilment of the civil and political right to equal recognition before the law. “Progressive realization” (art. 4, para. 2) does not apply to the provisions of article 12. Upon ratifying the Convention, States parties must immediately begin taking steps towards the realization of the rights provided for in article 12. Those steps must be deliberate, well-planned and include consultation with and meaningful
participation of people with disabilities and their organizations.

A partnership of equals

There is lots wrong with ‘The Plan’ to achieve what the government failed to in securing the release of people with learning disabilities from Assessment and Treatment Units, not least the self regarding way it was announced by Sir Stephen Bubb.  The lack of involvement of people with learning disabilities and their families in the decision to hand this role to voluntary sector organisations under the ACEVO umbrella mimics the very problems which have led us to this point – people being regarded as objects to be ‘done to’ not as active rights-holding citizens with unique insights, ideas and a major contribution to make to solving this challenge.

The way this came about suggests panic in the upper echelons of government and the NHS and a desire to get this ever more hot potato off the desks of Norman Lamb and Simon Stevens.  Panic does not however make for sensible answers.  Several hundred fewer people in ATU’s by a specified date does not mean several hundred people with learning disabilities and their families with the support they require to live successfully in the community.   Yes it is of course desirable to secure people’s release from ATU’s at the earliest opportunity, but that could be done without providing any viable alternatives and it is the creation of these rights-respecting alternatives that should be the mark of success.  The mention of ‘investing in buildings’ and of 10 year contracts in Bubb’s blog should raise major alarm bells sounding as it does like the Hungarian model of de-institutionalisation’ not a genuine attempt to foster inclusion.

The reality is that neither Stephen Bubb’s breakfast club or people with learning disabilities and their advocates can make this happen on their own.  In a contrite follow up blogpost Bubb has said he recognises this, acknowledging the importance of ensuring ‘the voice of the client, carers and families are heard’ but the proposals he sets out still suggest a passive role.

What is required is a genuine partnership of a type all too rare: people with learning disabilities employed in key roles by the organisations commissioning community based solutions, mechanisms such as integrated personal budgets and the support to direct and manage them which allow individuals and families to commission their own support, peer support for those moving from institutions back into the community and their families and for people with learning disabilities and their families to have a seat around the table at the breakfast meetings where such plans are hatched.

In short, what is required is a partnership of equals.

 

 

 

Signal failure

The Assisted Dying Bill will receive its Second Reading in the House of Lords on 18 July. I’ve written about ‘assisted dying’ before here and here.   Having recently engaged in lengthy debate with advocates for the Bill, albeit within the 140 character confines of Twitter, I wanted to add a few further reflections on their arguments.

The Bill before the House of Lords is based on legislation which has been in place in Oregon since 1998, providing physician assisted suicide (PAS) to legally competent adults who are expected to live for less than 6 months. Importantly this legislation is subject to annual monitoring regarding the numbers, characteristics and motivations of those seeking PAS.

This monitoring reveals that since 1998 39% of people seeking PAS cited concern about being a burden on family, friends of care-givers as a reason.  In 2013 the figure was 49%. It also reveals that the main reasons given by people seeking PAS in Oregon to date have been loss of autonomy (91%), being less able to engage in activities making life enjoyable (89%) and loss of dignity (82%).  Inadequate pain control or concern about it was cited in only 23% of cases.

If an objective of ‘assisted dying’ is – as Dignity in Dying argue – to relieve suffering, the suffering most cited relates to what people feel able to be or do and to their sense of self, rather than physical pain.  As such we must conclude that their motivations are not wholly intrinsic in nature.

In addition to regarding these motivations as legitimate and accepting them at face value, the Bill’s advocates also argue that it is targeted only at those expected to die within 6 months and hence that it has no implications for others and for disabled people in particular. Yet while the option of ‘assisted dying’ may only avail itself once people enter a 6 month zone of anticipated death (and only then does it stop being called ‘assisted suicide’), people will for the most part have been living with a progressive condition for a considerable time – sometimes their whole life.  It is  during this time that their sense of being a burden, of losing autonomy and dignity will have developed or that they may have reached a ‘clear and settled intention’ to end their own life as a consequence, not necessarily during the final 6 months of their life.   Indeed, many campaigners are seeking a change in the law related to assisted suicide outside of the 6 month timeframe for just these reasons.  For example, 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.’   Hence, while the Assisted Dying Bill will not allow a persons desire to die to find expression until they are deemed to have only 6 months left to live, it nevertheless legitimates their goal of doing so, irrespective of the motivations, from whatever point they arrive at a so called ‘clear and settled intention’.

This is why both the wider social and economic context in which such decisions are made and the signal that legislating for assisted dying might send cannot be ignored in any debate about the merits or dangers of this Bill.  People do not come to be viewed as or feel a burden, or to lose their sense of dignity or autonomy in a vacuum.  Such feelings are shaped by context, experience, the availability and quality of support and by expectations.  These external conditions prevail upon people with progressive conditions just as they prevail upon people with non-progressive conditions.

On Monday it was reported that 515,000 fewer people even receiving care in England since the economic downturn hit.   We live in a society that is rapidly dis-investing in older and disabled people – including those with progressive conditions -, rendering care an ever more private rather than public matter, with individuals and families left to cope alone increasing feelings of burden among carers and cared for.  We already lived in a society which devalues older and disabled people to the extent that medical professionals sometimes assume people prefer death over living without actually discerning their views. This is a particular risk for people with progressive heath conditions.

Surely even the Bill’s advocates recognise the dangers of providing a right to assisted dying in the absence of a right to assisted living?  That people may arrive at a settled view that they wish to die well in advance of reaching the 6 month zone because of the social and economic climate is a legitimate concern, and the statistics from Oregon regarding the motivations of those seeking assisted suicide do not provide any reassurance on this.

It is worth recalling at this point how the last unsuccessful attempt to change the law – Lord Joffe’s ‘Assisted Dying for the Terminally Ill’ Bill of 2005/6 – supported by Dignity in Dying did not include the 6 month time-limit, only that the person had a terminal illness, the capacity to decide and access to palliative care. While the new Bill’s advocates claim there are empirical reasons for it to impose a 6 month limit I believe the real reason is the limits of current public opinion and recognition that the scope of the Joffe Bill exceeded it. Given this and ongoing campaigns and strategic litigation such as that relating to Tony Nicklinson it is therefore not illegitimate as some have argued to express concern about a slippery slope were the Bill to become law.  There is every reason to anticipate that the scope of the law would, if enacted, eventually extend to those with terminally illness generally (if not also to people with serious impairments or health conditions that are not terminal in character).

It is true to say as did the recent British Medical Journal editorial in support of the Bill  that ‘That much mentioned victim—the elderly lady who believes she has become a burden to others and offers herself up for assisted dying—will not qualify’ under the Assisted Dying Bill.  But one does not need to be concerned that the Bill’s internal safeguards would fail to be worried about where the motivations to end ones life come from, the signal this Bill would send in the current context, accepting as it does that feeling a burden is sufficient reason to ask to be helped to end ones life, and the potential for the laws scope to expand to encompass such a scenario in future.

Laws – such as Equal Marriage, the Lobbying Act or prohibiting smoking in public places, send social signals, deliberately or otherwise which mean their impact extends far beyond their specific provisions.  That this Bill would indicate that our compassion should extend to helping people to die, but at the same time fail to give people the support to live seems to me a dangerous signal indeed.

 

 

 

 

Killing people with kindness

I’ve spent a fair amount of time today being distracted by (and indulging in) debates on Twitter regarding the pros and cons of the Assisted Dying Bill.  Of most interest and challenge was my discussion with Dr Paul Teed who describes himself as a ‘A British junior A+E doctor and evidence based supporter of 

In response to my question ‘what would success look like?’ regarding the impact of the Assisted Dying Bill were it to become law Paul argued that it would bring ‘checks and balances’ to a situation that was and would in any case continue to happen with or without the law (i.e. people securing third party assistance to take their own life).  The law he argued was in the interests of patient safety and that ‘it would not lead to massive scale unchecked voluntary (+non voluntary) euthanasia (as it would reduce this practice) = improvement.’

I confess to finding this argument quite compelling.  It reminds me of the case that was made to legalise abortion law in the late 1960’s, or the case for needle exchanges for intravenous drug users to guard against HIV transmission.  It does not demand that one morally supports assisted dying (or abortion, or drug use); only that one might be inclined to put people’s safety above all other considerations.

Yet if one pursues this logic, why be confined to people who wish to take their own life because they have a terminal illness?  All suicides are presently unchecked.  All who seek to commit suicide may do so in a manner which involves avoidable pain or suffering (or which fails sometimes leaving a person with horrific injuries).  Why are we willing to help people who are terminally ill through medical intervention but not people with a ‘settled view’ that they wish to end their own life for other reasons?

We’re not willing to do so because we do not wish to be complicit in the suicide of people generally.  We may not be able to stop people taking their own lives, nor is doing so an illegal act, but we do not generally as society respect the choice to do so sufficient that we sanction physician assisted suicide on demand.  We discourage it.  We seek to prevent it happening in prisons or other closed institutions and investigate it when it does. We do not accept it.  Nor would we agree to a change in the law such that helping someone take their own life was generally deemed acceptable.

So ultimately we come back to the rationale of permitting assistance where a person has a terminal illness and is expected to die naturally within 6 months.  And whilst the Assisted Dying Bill does not employ the language of ‘suffering,’ the framing and narratives of campaigns for assisted dying are literally drenched in it.  Relieving ‘unnecessary suffering’ is the stated objective of those who support a change in the law.   I am quite certain that it – rather than a concern for ‘free will’ –  is also the basis for (widespread) public support as well.

And what may on the face of it seem like the most noble of objectives is I believe also why no matter what safeguards are included, or assurances given, the passing of this legislation would let the genie out of the bottle and place others who either do not seek assisted suicide, or whose circumstances the Bill as drafted excludes, at risk.

While at present the proposed Bill is restricted to adults with competence, considered to have reached a ‘settled decision….reached voluntarily, on an informed basis and without coercion or duress’ in two EU countries which already have such laws attention subsequently turned to those without competence, including children, on grounds of relieving suffering. In making the case for euthanasia for terminally ill children Belgian Senator Jean-Jacques De Gucht argued that ‘There is no age for suffering and, next to that, it’s very important that we have a legal framework for the doctors who are confronted with this demand today” (my emphasis).  If relieving suffering is the primary aim, it does seem somewhat counter-intuitive to require that children endure that which adults might be relieved of?  And if parents can give consent to medical treatment, or to its withdrawal, then why not to actively terminating a child’s life on grounds of unnecessary suffering?  It also seems entirely feasible that arguments should be made to relieve the suffering of people deemed to lack competence, as Doctors have done in Holland and I am quite sure will be argued in the UK.  The obvious risk is that should this Bill become law it will act to normalise the idea that the active ending of life is a legitimate method of ‘relieving suffering’ and as a consequence see euthanasia expand into other realms.

Paul and others have also argued that the Assisted Dying Bill poses no threat to disabled people generally given the strict limitations involved. Putting aside the fact that there are many people who be regarded as disabled who also have ‘terminal illnesses’, I believe this is to ignore the danger created by the social signal this legislation will send.

Disabled people are frequently described in the media and elsewhere as ‘suffering’ from their condition.  While recognising how Dignity in Dying has been careful to distinguish its current goals from high profile cases such as that of Tony Nicklinson – who despite seeking assisted suicide would not have been able to benefit from the proposed law – it seems clear to me that such cases have nevertheless helpfully rallied public support for assisted dying.  This is precisely because the public – and the media – sees ‘suffering’ in such cases and they do so not only because of the way his story was told, but because it confirms pre-existing ideas of what it means to be disabled.  The recent case involving a mother killing her three disabled children is a case in point – all newspaper reports focused attention on the nature of her children’s health condition and the degree of ‘suffering’ involved or life expectancy anticipated as if either would have justified her actions.   One must conclude therefore that a great deal of public support for this legislation arguably draws from the same well of misplaced compassion as that which underpins the continuing prejudice and discrimination faced by disabled people in all walks of life and that support is not confined to the constraints imposed by this Bill.

This is why the citing by Dignity in Dying and others of public opinion polling which finds widespread support for assisted dying should be regarded with caution.  For example, they quote the British Social Attitudes survey 2010 which found ‘82% of the general public believe that a doctor should probably or definitely be allowed to end the life of a patient with a painful incurable disease at the patient’s request.’ This data is presented at face value – the opinion of respondents taken as informed and unsullied by prejudice or stereotypes.  Contrast this with the finding of the BSA 2012 that ‘three out of four (75%) respondents advocate a reduction in immigration overall, a rise from 63% since 1995. 51% want a large reduction.’   Do we regard the opinion of these respondents regarding immigration as informed and unsullied by prejudice or stereotypes? No – we naturally suspect that opinion is shaped by various forces and worry about its significance.  So we should with respect to attitudes to assisted dying.

Perceptions regarding the suffering of people with impairments and health conditions are not only very often misplaced and grounded in stereotypes and prejudice – which devalue disabled people’s right to be included in and supported by society – they are sufficient to permit people to rationalise the very ending of a human life.

Paul and others may see no risk of a massive rise in ‘unchecked’ voluntary euthanasia, but he passes no comment on whether as a society we might reasonably be concerned by a significant rise in ‘checked’ voluntary euthanasia following the passing of the Bill into law. He and others also disregard the possibility if of it providing a stepping stone towards the expansion of euthanasia more generally.  I am unconvinced and my fear is that whatever the safeguards in this Bill, its passing could make for a much less safe and supportive society in which to be a disabled person.