Toddlers, robots and being human in 2020

robot

I’ve not really had time to read into this, so putting it out there based on personal experience and as a hunch, to be challenged, explored and tested….

…in sum, I think people are hard-wired to seek control over their own day to day lives.  When rendered an object, or left with a sense of limited power, people sometimes striveto exercise that control by withholding cooperation or through little acts of defiance or protest. These can in turn be misperceived as an absence of rationality or capacity and cited to justify further incursions into their agency and power by others in the name of ‘care’.  This is because authorship of our own lives is core to establishing and maintaining our identity and our sense of self worth.  I’m thinking in particular of people who have dementia – who are often deemed unable to exercise agency safely – but I think it probably applies to other people who require some degree of support.  This includes children of course, among whom such acts of protest or defiance are accepted as staging posts on the journey to adulthood, as their personhood and identity takes root.

I was first struck by this when watching ‘The toddlers who took on dementia’ on BBC 1 a year or two ago.  Several pre-schoolers spent a week hanging out with adults with dementia in a day centre, matched by their interests.  By the end of the week, the psychologists noted how the adults had, to the best they could, reasserted their adult responsibilities.  Remarkably, one woman, who had not uttered a word while at the day centre for 3 years, spoke fluidly to the children, giving them adult advice.

More recently, I was told of a visit made by a technology company to a care home in the West Country, to see how care home residents with dementia reacted to a humanoid type robot.  As with the toddlers, residents who had not been speaking to staff or other residents began to talk to the robot, and became very defensive when during the demonstration the company rep pushed the robot over to show its ability to get back up.   People’s sense of their own identity and agency appeared to be liberated when the power relationship shifted back in their favour or their own power and status was no longer threatened.

At the recent launch of A Better Way Network’s call to action, David Robinson spoke movingly about the importance of relationships in public services.  He told the story of his 93 year old dad’s period in hospital, where a ward sister doing her morning round had sat down on his bed, held his hand, addressed him by name and asked how he was and David noted how his dad visibly brightened.  He contrasted this with a nurse who later that morning came to take his dads blood pressure, which she did so without speaking to him, and how his spirit appeared to sink and later, apparently in protest, he refused to eat his lunch.

And I see it in my dad, who has Alzheimers and, despite needing an increasing level of support, deeply resents condescension and becomes positively uncooperative when sensing it.  And rightly so.

What’s the lesson here? Well, if there is anything in these observations, it’s that a care system that withdraws control from people, through coercion, or the imposition of rules and regimes, power play or condescending behaviour is likely to face people who withdraw their cooperation, to the extent that the exhibit behaviours that are (at least sometimes) misread as declining capacity or capability.  People such as Mark Neary have spoken movingly about this with respect to the Catch 22 faced by people with autism and/or learning disabilities in so called ‘assessment and treatment units’, where failures to comply with prescribed behaviours result in further coercion, restrictions on liberty and regimes and so on being imposed.  The downward spiral continues.

What if instead real attention was paid to relationships of power when it comes to care and support?  Not just personal budgets, or person-centred planning and so on, but in the everyday interactions people experience with others, where genuine respect for people’s identity, will and preferences provided the foundational principle of what good care and support is?  This isn’t just about ‘kindness’ – though kindness is crucial – it’s about a constant appraisal of where power lies in relationships of support.  Moreover, it’s about recognising that autonomy is relational: it rests upon the quality of our relationships with others; it does not exist in despite of them.  As a result autonomy can be ignited, nurtured and – at least to an extent – maintained by focusing on matters of power.

I think this is what Julie Stansfield and colleagues at In Control are getting at with their ‘Be Human’ initiative and I applaud them for it, because its too easy to hide behind rules and regulations and professional jargon when the only thing that really matters is to ‘Do unto others as you would have them do unto you’.  That means reversing the usual cycle of wrestling more and more power from those who require support, towards respecting, reaffirming and restoring it.

Happy New Year!

Neil

 

 

 

 

 

 

 

 

A ‘truly independent’ Equality and Human Rights Commission?

There’s been a lot of coverage and consternation today about Labour’s announcement that it would enact reforms to achieve a ‘truly independent’ Equality and Human Rights Commission.  Specifically, many have seen it as an attempt by Labour to discredit the EHRC as it investigates the Party with respect to allegations of anti-Semitism. The Jewish Chronicle quotes the Jewish Labour Movement spokesperson saying: “We’re through the looking-glass when Labour says it will create a ‘truly independent’ EHRC. There’s nothing wrong with the EHRC”

This evening, BBC Newsnight acquired a letter from June 2019 from the Commission’s Chief Executive Rebecca Hilsenrath to the Civil Service’s head of HR alleging that the Commission’s Chair David Isaac was declining to take public positions on issues such as the loss of EU Structural Funds, or the withdrawal of Shamima Begum’s citizenship.  It was suggested that the letter was leaked from within the Commission and its timing would indicate an intention of raising further questions about the independence of the organisation with respect to its inquiry into the Labour Party.

So far, so murky.  But I do think it’s worth bringing a bit of clarity to the question of the EHRC’s independence, and the fact that it has for much of the Commission’s life been seen as sub-optimal, including by the Commission itself, by the UN-sponsored accreditation body concerning the status and independence of national human rights institutions and – since 2010 – by the Labour Party.

The EHRC was established by Parliament via the Equality Act 2006 as a non departmental public body, enjoying the same legal status as its predecessors the Disability Rights Commission, the Equality Opportunities Commission and the Commission for Racial Equality.  This means that the Chair and Commissioners are appointed by Ministers, that the budget for the Commission is set by government, that the Secretary of State lays its annual report before Parliament and that the Commission has to abide by various rules governing the civil service.

The EHRC first sought accreditation by the snappily titled ‘International Coordinating Committee on National Human Rights Institutions (NHRI) sub-committee on accreditation (ICC SCA)’ in 2008.  This involves a complex and lengthy submission demonstrating how an NHRI seeking accreditation meets what are known as the Paris Principles.  The body can award, A, B or C status, which relate to the independence (from government and from other actors) and powers of the body in question.  The Commission was awarded ‘A’ status, but with various conditions attached that it – and government – were expected to address.  This included questions about the process by which the Chair and Commissioners were appointed, about how it laid its annual reports before Parliament and about how its budget was set by government – that is to say, the factors considered determinative of its independence.

Following a damning report by the Joint Parliamentary Committee on Human Rights (triggered by the resignation of a number of Commissioners over their disputes with the Commission’s then Chair Trevor Phillips) the ICC SCA reviewed the Commission’s ‘A’ status, ultimately reaffirming it but expressing once again its recommendations regarding independence.

After the 2010 General Election, the coalition Government began imposing dramatic cuts to the Commission’s budget & latterly sought to reform the Commission’s duties and powers as part of the ‘red-tape challenge’, a specific consultation on its duties and powers and then via the Enterprise and Regulatory Reform Bill 2013.  Even without legislative reform it withdrew funding for the Commission to provide its helpline and mediation services.  It was the Commission’s status as an NHRI and the interventions of various UN officials that acted as a bulwark against the government taking further steps to erode the Commission’s independence.  Indeed in 2014/15 the ICC SCA subjected the Commission to a further accreditation process and while reaffirming its ‘A’ status once again, made a series of recommendations for reform concerning appointments, reporting and financing linked to the Commission’s independence.

To come back to today’s allegations about the Labour Party, it’s important I think to note that the EHRC itself in 2011 proposed that

‘… the standard model of NDPB accountability is [not] a sufficiently outward and visible guarantee of independence from the government to be appropriate to a national human rights commission (or indeed the proposed single equality body, whether or not integrated with a human rights commission).’ [1]

‘On the whole we would tend to favour a form [of appointment] which requires a duty to consult Parliament on the appointment of commissioners as a guarantee of independence and democratic accountability, so long as this was a statutory duty.’ [2]

‘As a guarantee of independence, Parliament should be directly involved in the setting of any commission’s budget.’[3]

In a briefing to Parliament in 2012 on the Enterprise and Regulatory Reform Bill the Commission noted:

“More recently, the JCHR has agreed the Belgrade Principles[1]. These principles relate to the relationship between NHRIs, such as the Commission, and national Parliaments. The principles were adopted by participants at an international expert seminar led by the UN Office of the High Commissioner for Human Rights in 2012.

The Belgrade Principles include several mechanisms for closer relationships between Parliaments and NHRIs, for example:

  • ‘NHRIs should report directly to Parliament.’
  • ‘Parliaments should develop a legal framework for the NHRI which secures its independence and its direct accountability to Parliament…’ and
  • ‘Parliaments should invite the members of NHRIs to debate the Strategic Plan and / or its annual programme of activities in relation to the annual budget.’”

Labour Peers tabled amendments to the Bill with a view to securing an enhance role for Parliament with respect to the Commission, but these were ultimately unsuccessful.

I’ve not been able to track Labour’s position at the 2015 General Election with respect to the EHRC (if there was one at all) but I do know that conversations took place between external advocates and senior Labour shadow Ministers about the possibility of the Commission reporting to Parliament.  Crucially though, Labour’s 2017 manifesto included the following:

“A Labour government will enhance the powers and functions of the Equality and Human Rights Commission, making it truly independent‘ (my emphasis).

That is to say, Labour fought for greater independence for the EHRC back in 2012/13, in line with the EHRC and JCHR’s position and used the words ‘truly independent’ with respect to this policy in its 2017 manifesto.  It has not emerged in response to the Commission’s anti-Semitism investigation, though that it not to say reiterating that position might not now be being harnessed to undermine confidence in the Commission’s independence, and the Newsnight story does seem to suggest manoeuvres to those ends.

Crucially, in research I carried out with Professor Colm O’Cinneide into NHRIs and equality bodies in the EU in 2013, a distinction was drawn between ‘de jure’ and ‘de facto’ independence i.e. between the legally defined independence and powers of the body and whether the body conducted itself in a manner which demonstrated independence.  The process of appointing and re-appointing the Chair and Commissioners of the EHRC and the manner by which its budget is set undoubtedly provides opportunities for Ministers and officials to exert influence which can be construed as interfering with its independence.  People had a range of views about how ‘de facto’ independence might be measured.  For example some looked for evidence of a more outspoken, activist approach, intervening publicly with its views on key issues, whereas others saw a much more objective and balanced approach as being key, and don’t anticipate such bodies simply ‘speaking out’, but expect due processes of research, investigation, litigation and so on.  It’s a hard line to walk and for what its worth, my observation has been that the Commission has become generally more outspoken under the leadership of David Isaac and Rebecca Hilsenrath – certainly on issues like the impact of austerity on disabled people and the risks for equality and human rights of Brexit (and this may have come back to bite them).

So where does that leave us?  The Labour Party has an anti-Semitism problem that it has failed to address and the Commission is right to have launched a formal investigation.  A cleverer politician than Corbyn and his acolytes would welcome it as an opportunity to ‘clean out the stables.’ Attempts to discredit that investigation by calling into question the independence of the Commission are wrong and wrong-headed (and the EHRC needs to establish who is responsible for the leak and discipline them appropriately).  At the same time, the Labour Party is committing to enhance the Commission’s independence, in line with a policy it, the JCHR and EHRC have pursued since well before Corbyn became leader, which features in the 2017 Labour manifesto and which international best practice standards advocate.  Crucially, if implemented it would deny Labour and other governments the influence they will otherwise enjoy over what the Commission does with its powers in future.

Inferences aside, a ‘truly independent’ EHRC is long overdue.

 

 

 

 

 

 

The Public Administration Committee has also emphasised the importance of Parliamentary accountability and scrutiny of non-departmental public bodies.[2]

[1] ‘Belgrade Principles’ on the Relationship between NHRIs and Parliaments, Office of the UN High Commissioner for Human Rights, see: http://www.theioi.org/downloads/frved/Belgrade%20Principles%20on%20the%20Relationship%20between%20NHRIs%20and%20Parliaments.pdf

[2] Public Administration Committee, 5th report 7 January 2011, http://www.publications.parliament.uk/pa/cm201011/cmselect/cmpubadm/537/53702.htm

 

[1] Sixth report, 2002-03, para 230.

[2] Ibid para 223.

[3] Ibid para 225.

 

 

 

 

 

 

 

Time for a relief from tax

In his seminal book ‘Don’t Think of an Elephant – know your values and frame the story’, Professor George Lakoff describes how in the US, Republicans have succeeded in framing the issue of taxation as “tax relief,” a metaphor that presents taxes as an affliction, and that predetermines who are the heroes – tax opponents – and villains – anyone collecting or proposing to raise them. Taxes are of course necessary if we are to have things like a military, schools, social security, hospitals… and social care. But making the case for public spending is made significantly more difficult when the frame is ‘tax relief.’

In the UK, ‘tax relief’ doesn’t seem that common a frame, but it is clear that ‘tax’ is commonly framed and thought of as a form of theft or punishment. Indeed, this is the very reason campaigners for increased public funding of social care have used it to convey the unfairness of current arrangements.   Were tax not widely thought about in this way, then phrases such as ‘death tax’, ‘care tax’ or ‘dementia tax’ would either be meaningless or could sound potentially attractive.

The problem of course, is that in using ‘tax’ in this way, campaigners are reinforcing the framing of tax as theft or punishment. And given the goal of these campaigners is, ultimately, increased public spending on social care, doing so is also, ultimately, undermining their own cause.

If we are to have the public services we need and want, then we are going to have to pay for them somehow, and pay more. So we need both to avoid feeding the dominant framing of taxation as theft or punishment and to set about– in collaboration with others – reframing how we talk about taxation and public spending itself, for example, as ‘pooling our resources’ or as ‘shared investment in the things that matter to all of us’.

 

 

It’s time to be pro-investment, not anti -austerity where disability rights is concerned

This afternoon (19 December 2018) MPs will debate the impact of austerity on disabled people’s rights in the UK.

One of the last things I did at the Equality and Human Rights Commission in 2011 was help prepare its submission to the Joint Parliamentary Committee on Human Rights inquiry into disabled people’s right to independent living.  A few months later, one of my first jobs as a freelance was to work with Jenny Morris as a specialist adviser to the Committee, reading the evidence submitted by disabled people and their organisations, getting to grips with the government’s obligations arising out of domestic law and the UN Convention on the Rights of Persons with Disabilities, preparing the Committee for evidence sessions with witnesses and drafting the final report.  Central to its findings and recommendations was this:

“Given the breadth of the current reforms, the Government should publish a unified assessment of the likely cumulative impact of the proposals on independent living, and set out any relevant mitigations through the Disability Strategy. The relevant strategies in the devolved administrations should also include such mitigation plans.”

In its response the government said:

“The ability to undertake cumulative analysis is limited because of the complexity of the modelling required and the amount of detailed information on individuals and families that is required to estimate the interactions of a large number of different policy changes.

The Disability Strategy will be accompanied by a process to allow monitoring of progress at national and local level and which will draw on the lived experiences of disabled people. It will be a living document that will continue to develop as progress is made, and to reflect changing circumstances and priorities. It will be for the devolved administrations to consider their approaches in the light of their devolved responsibilities.”

There have been numerous calls for such an assessment since, including by Pats Petition, the WOW campaign, the Centre for Welfare Reform and crucially by the United Nations Committee on the Rights of Persons with Disabilities.  The government has held the line that it is too complex to do.  In the meantime  The Equality and Human Rights Commission has commissioned the analysis, which shows that disabled people have and will continue to be disproportionately affected by reforms and spending cuts to 2022.

Of course the call for a ‘cumulative impact assessment’ is really a call for transparency and accountability.   That’s also why it hasn’t and won’t ever be delivered by this (or I’d wager any future) government.  Calls for it, and the government’s ongoing refusal to carry one out, may serve some limited political objectives of the Labour Party.  But I fear that it is ultimately a cul-de-sac in terms of advancing disability rights.

The negative impact of austerity has not been confined to its material effects on disabled people’s freedom and wellbeing.  It has also increasingly consumed the way disabled people’s lives are discussed in political debate – as a matter solely of public spending.  Hence, whether politicians are defending cuts, or arguing against them, disabled people’s lives are framed as a cost.  This is especially so where the accompanying rhetoric speaks not of the consequential limitations on equality and participation, but of ‘cruelty’ to the ‘most vulnerable members of our society’ – language reminscent of a pre-disability rights era where disabled people were regarded only as objects of charity or care.  The idea that the disability rights agenda is solely a question of public spending, and the framing of new movements as anti-austerity has also deeply polarised the debate – suggesting that the left should enjoy a monopoly on disability rights.  I’m sure there are many that will share that perspective, but UK political history tells a rather different story, with key developments – the shift towards inclusive education, away from instititonal care towards community care, the introduction of Disability Living Allowance, the Direct Payments Act, the first Disability Discrimination Act – being introduced by Conservative governments.

By objecting the Conservatives only to protest, not to any proposition, opportunities continue to be missed.  While the impact of austerity-led reforms and spending cuts continue to be felt – and felt acutely – the Prime Minister’s announcement at the Tory Conference that the philosophy of austerity was over presents at very least an opportunity to reset and reframe the terms of government policy on disability.  For example, disability organisations might campaign for policy leadership on disability to shift from DWP to the Women’s and Equalities Office, now housed in the Cabinet Office. While it would not have any immediate material effects, it would send an important signal of intent, to see disability as more than a question of welfare reform, and instead a matter of equality and rights.  This could help create political space for the Conservatives to define an agenda centred on freedom and opportunity, embracing education and support for children and young people, employment, public service reforms, accessible transport, goods and services and so on (well, we can only dream).

Moreover, in limiting action to protest, Labour is being let off the hook.  I do not hide my dislike for Corbyn’s Labour Party, but whomever was in charge, it is right to expect a Party now closer to forming the next government than ever before to be more than a protest movement.  The Party has listed a number of social security policies that it will ‘scrap’ – Universal Credit roll out, the bedroom tax, assessments for PIP and ESA – and many will welcome these promises. Yet it if does ‘scrap’ them, it will need to replace them with something else.  We know little if anything of its plans.  Ditto the long term funding of social care.  It seems intuitive to expect a Labour government to be more generous and compassionate, but policies in these areas are not forthcoming.  Moreover, there are real and serious concerns about the approach Labour will take in areas such as personalisation, which are not confined simply to levels of expenditure, that must be asked.   Beyond these plans to scrap things the Party has said that it will bring the UNCRPD into domestic law, yet its clear that it hasn’t given much thought to the real implications of this commitment.  If it has, then can disabled people can expect justiciable economic and social rights and an enforceable right to independent living?

Austerity continues to wreak huge damage on the lives of disabled people of all ages.  Its impact will be felt for generations to come.  It has set back an agenda that had been making huge strides forward until the financial crash of 2008.  But an anti-austerity agenda, focused on accountability for past actions, speaking only from and to the left and limited largely to protest rather than proposition about the future is unlikely to spark a way forward.

For that, the time has come to ditch austerity and anti-austerity alike and forge a cross Party agenda to be pro-investment in the life chances of disabled people.

 

 

 

 

 

 

 

 

 

 

 

We need to talk about not talking about care…

Just heading back from an interesting afternoon at the European Commission in Brussels, where the EU Agency for Fundamental Rights (FRA) was presenting the findings of its latest study into implementation of the right to independent living, focusing on practical steps to make the right a reality on the ground.   The FRA really should be congratulated for its leadership on independent living and I hope they will continue to give the issue priority, building on their work so far.

At the heart of the debate about independent living in Europe is the role of European Union funding and specifically the European Social and Investment Funds (ESIF).  In 2013, the regulations governing use of the funds for the first time included provisions (known as ‘ex ante conditionalities’ or in plain English ‘the things you have to show before you can spend the money’) that in theory prohibited use of EU funding to build, develop or maintain institutional care and which directed – for a limited number of EU member states – funds to be invested in the ‘transition from institutional to community based care’.  For the next funding period a different approach is under debate, which on my initial take appears more universal (it applies to every Member State) yet arguably less prescriptive.

I’ve picked up concerns about this new proposed approach from various European disability organisations, but will need to delve deeper to really understand the implications.  What I want to focus on is something else: language.

Last year I worked on a report for Community Living for Europe: Structural Funds Watch.  In ‘Opening up communities, closing down institutions’, we noted how, while the EU is committed to promoting implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities to ‘live independently and to be included in the community’, the language in the ESIF regulations concerns the ‘transition from institutional to community based care’ (my emphasis) and the report recommended that it should in future refer to ‘community based living.‘  Sadly, the draft regulations continue with ‘community based care’.

I believe this to be problematic for a number of reasons, which have implications not only for the debate at the EU level, but also debates in the UK around the future of social care.

Care is a different concept to independent living, and hence the language used does not correspond with the EU and Member States’ obligations arising from the UNCRPD

The language of care invokes ideas of people being ‘looked after’ rather than active citizenship.

It suggests a transactional, one-way service, rather than the idea of disabled people as part of the reciprocal, mutually supporting relationships to be found in well-functioning communities.

It does not challenge us to think about and invest in cultivating the conditions necessary for social inclusion, because implied within it is the idea that people are, by dent of requiring care, already excluded.  As a result, while it may achieve the geographic movement of people from tangible institutions into alternative settings, what may persist is what Alex Fox has termed ‘the invisible asylum’ – people live in the community but remain apart from the community.

It invites an approach whereby institutional care is reorganised, rather than eradicated or replaced.  For example, the shift from 100+bed social care or psychiatric institutions in remote locations to 20-30 bed ‘group homes’ with closer proximity to urban centres, or residential homes becoming ‘independent living centres’ via the addition of locks on resident’s doors.

Finally, it implies a cost rather than an investment.

None of which is to diminish the importance of caring for others as a value to be nurtured. But ‘care’ as conceived of here versus ‘care for others’ as a virtue are not the same thing.  Often the reality of ‘care’ suggests that there is a major deficit of care for others.  Certainly, it rarely embodies a belief that those requiring support have the equal right to an ordinary life.

This simple shift in language and focus from ‘care’ to ‘living’ would, in my view, lead to profound changes in policy, practice and the direction of resources.  We would still need to think about the way to organise what we call personal care.  But we would do so within a broader frame of thinking, including for example:

  • How to give people real power to be the author of their own lives? For example, legal and financial power, peer support, information and advocacy
  • How to stitch people into communities, to build connections and relational & reciprocal supports
  • How to affect deep social attitudinal change, for example via fostering contact between disabled and non-disabled people, not only via media portrayal

Despite the corrosive effects of austerity, I’ve seen more and more examples of people and organisations striving for the above in the UK, albeit at the margins of practice not in the mainstream.  I’ve seen very little of this in the studies and reports generated about independent living in the EU, even less in terms of the expenditure of EU funds.

It will not change the world, but the simple of act of reframing the goal from ‘community based care’ to ‘community based living’ would, I believe, at least helpfully refocus our efforts.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Representing disabled people – what the UN disability rights committee has and has not said

On Friday 28 September I retweeted a link to the latest General Comment from the UN Committee on the Rights of Persons with Disabilities, on what constitutes ‘representation of persons with disabilities’ noting that:

“I’m sure lots of disability charities led by non disabled people will find their reasons to reject this, but a milestone statement by the UNCRPD Committee that only organisations led, directed & governed by disabled people can be regarded as representative.”

I imagined a few people might retweet and reply, but by Monday several hundred people had done so, all across the world, with heated debate about its implications. Here, for what it’s worth, are my more considered thoughts on what the Committee has said.

The Committee is giving guidance as to the meaning of ‘representative organisations’ as referenced in the obligations on State Parties in articles 4 (3) and 33 (3) of the Convention to ensure their involvement and participation in implementation and monitoring the obligations arising out of the Convention. Article 4(3) says:

“In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.”

In its new General Comment, the Committee is unequivocal that:

“organizations of persons with disabilities should be rooted, committed to and fully respect the principles and rights recognized in the Convention. They can only be those that are led, directed and governed by persons with disabilities. A clear majority of their membership should be recruited among persons with disabilities themselves.”

What the Committee’s General Comment therefore does, very clearly, is distinguish between organisations of disabled people – representative organisations – and organisations for disabled people. So for example, in the UK, Scope, Mencap, Action on Hearing Loss, Leonard Cheshire and Shaw Trust would not meet the Committee’s definition of a ‘representative organisation’, however much they strive to represent the views and priorities of their beneficiaries, whereas Disability Rights UK, Inclusion London and Equal Lives would do. For others, such as RNIB or Learning Disability England, it is perhaps less clear.

It creates a clear expectation that States closely consult, involve and support disabled people’s organisations and it makes clear that it will not consider the consultation and involvement of non-representative organisation as a State having fulfilled its obligations.   ‘Close’ consultation and ‘active’ involvement indicate far more than obligatory, passive consultations. A few years ago I gave this presentation at a British Council event, exploring what such involvement means in practice:

Of major interest to DPOs will be the Committee’s position that:

“States parties should support organizations of persons with disabilities, through sufficient and independent funding and technical capacity-building, to be able to fulfil their roles under articles 4 (3) and 33 (3) and for autonomous participation in consultations”

The Equality and Human Rights Commission should be recognised here for its efforts to involve and support DPOs in engaging with the CRPD Committee’s examination of the UK and ongoing monitoring.  But the Committee’s position clearly lays responsibility with central government.

At the same time, this position does not preclude States from engaging and involving other organisations and taking on board their views, knowledge, insight and perspectives. Certainly, Article 33.3 of the Convention says ‘Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process.’ (my emphasis) which clearly leaves the door open to non representative organisations being involved. This strikes me as a crucial point, both because there are many non-disability led organisations who, as allies, can make a vital contribution to advancing disability rights (such as generalist human rights organisations or anti-poverty campaign organisations for example) and because it may sometimes be beneficial to also engage organisations with extensive technical and market experience gained through providing services, or who have relationships with disabled people and their families through such service provision. However, the Committee’s position should be seen to call to an end any such non-representative organisation being regarded as ‘the voice’ of a group of disabled people and for them to be engaged with for what they are.

There are also a great many organisations providing valued services to disabled people who do not strive in any way to ‘represent’ disabled people. The General Comment can be regarded as a signal to them to more closely involve and consult disabled people, but it does not spell their illegitimacy as service providers or demand that only user led organisations win public funding to do so.

Quite reasonably, a number of parent advocates expressed concern at the content of my tweet.   The General Comment however helpfully clarifies (12 (d)):

“Organizations including both persons with disabilities and family members and/or relatives of persons with disabilities are pivotal in facilitating, promoting and securing the interests and supporting the autonomy and active participation of their relatives with intellectual disabilities, dementia and/or children with disabilities, when these groups of persons with disabilities are not represented by their own organizations. In such cases, these organizations should be included in consultation, decision-making and monitoring processes. The role of parents, relatives and caregivers in such organizations should be to assist and empower persons with disabilities to have a voice and take full control of their own lives. Such organizations should be actively working to promote and use supported decision-making processes to ensure that the right of persons with disabilities to be consulted and to express their own views are respected;”

That is to say, the Committee recognises and indeed celebrates the role of parent advocates, but qualifies this with the expectation that parents are genuinely pursuing the rights of their children, including through the application of supported, rather than substitute decision making (though as we know, that distinction is not clear cut in practice and the Committee itself has so far failed to give detailed guidance on its meaning).

The General Comment is an important and valuable milestone, restoring power to disabled people over their own lives alongside other key provisions in the Convention, such as on equal recognition before the law and political participation. At the same time, disabled people’s organisations are only as representative as the people who give their consent to be represented by them and despite some claims to the contrary no single organisation can lay claim to being the authentic voice of disabled people, in all their diversity of characteristics, views and opinion. With this recognition comes greater responsibility on DPOs to be open, inclusive and democratic, be open to collaboration with one another and prepared to negotiate and compromise.  Some DPOs also need to confront some of their own internal conflicts of interest, given many also combine advocacy with providing services under contract with or via grants from national and local government bodies.

Most of all, effective representation demands effective listening. As the ever-wise Jane (now Baroness) Campbell cautioned in 1997:

‘A political consciousness does not itself constitute a social movement and an awareness of the culture and dreams of its constituency and creating activities as a result are what the British Council of Disabled People constantly needs to engage in’

 

Cohen’s mistake is to call for us to be conservative both in language and politics.

Nick Cohen makes three important points. In his Spectator piece ‘The Cheating Language of Equality’ and its abridged version in last Sunday’s Observer ‘Honeyed Words do nothing to curb prejudice against the disabled’ he notes how insistence on certain adopting forms of language when discussing issues connected to disability have done little to obstruct deep and damaging cuts to services and financial support. Indeed, I would share his analysis and add that the very ideas and language advocated by people such as myself may also sometimes have been weaponised to make the case for cuts, or certainly may have had the effect of diminishing public concern. Cohen also bemoans the reliance on what he labels ‘euphemism’, arguing that ‘it is easier to remove state support if you describe disabilities in a sing-song voice so soft and light you make them sound as if they are not disabilities at all.’   It is certainly true that the story of disability rights and the language used to tell it has proved extremely weak in the face of the story of spending cuts and the need to ‘live within our means.’ And finally, Cohen argues that language used to describe disability, however often it is reinvented, is appropriated as terms of offence by the wider population, suggesting that while the language may change, prejudice appears able simply to adapt.

These points merit being taken seriously. However, Cohen’s insistence that ‘The notion that you can change the world by changing language gets history upside down’ crumbles in the face of much recent evidence on the power of narrative. Language does lead to change, as ‘living within our means’ has proven to austerity, as ‘take back control’ has proven to Brexit, as ‘make America great again’ has proven to Trump and – more positively for progressives – as ‘equal marriage’ has proven across the Western world in securing the rights of gay and lesbian people to marry. Of course, such language wasn’t invented or deployed in a vacuum, and speaks to and harnesses other currents of change, but it plays a crucial role in shaping our views, feelings and actions.   Indeed, Cohen has spent a great deal of his considerable journalistic talents lately arguing (rightly in my view) that the Labour Party should adopt in full the International Holocaust Rememberance Alliance Working Definition of Anti-Semitism, essentially a guide to the language, statements or ideas that may constitute anti-Semitism and hence which should not be used. This is surely recognition of the power of language to shape the world for good or ill?   The deliberately deployed narratives of others have succeeded where disability advocates have recently failed in mobilising feelings, motivating people and guiding their viewpoints, choices and actions.   In sum, it isn’t true that language doesn’t lead to change, but it is true that language can fail to if poorly chosen or deployed.

Useless eaters

In his Spectator piece, Cohen says ‘Half the words now on the banned list were kindly meant in their day.’ Let’s unpick this a little. When the Mental Deficiency Act of 1908 used the terms ‘idiot’, ‘imbecile’, ‘feeble-minded’ and ‘moral imbecile’ it did not do so for benign reasons or to objectively describe people with learning disabilities, but to classify them as lesser human beings and hence justify discriminatory action, such as involuntary sterilisation and institutionalisation.   Lest we forget the popularity of eugenics in Britain prior to the Second World War, not least among national heroes such as Winston Churchill and those of the left such as Sydney and Breatrice Webb. In Germany in the 1930s Nazi propaganda described people with learning disabilities or mental health problems as ‘useless eaters’, emphasising the costs involved in keeping people alive, as a prelude to their extermination, which in turn served as a dry run for the Holocaust.   Only after the horrors of Nazi Germany became clear did eugenics lose (open) popularity in the UK, but its legacy is all around us, including in the language we use to deride one another. Cohen focuses on the word ‘spastic’ as an example of a word that was ‘kindly meant’, noting how Scope was previously the ‘Spastics Society’. But then, for Beatrice and Sydney Webb, so was eugenics (albeit through forced sterilisation and deprivation of liberty, not killing).   The issue today is not how we choose to describe this or that impairment or health condition, it is how we avoid describing our fellow human beings in ways that dehumanise, degrade and which render them vulnerable. A person with cerebral palsy is not ‘a spastic’, they are a person, who has cerebral palsy.   A person using a wheelchair is not ‘bound’ by it, they are liberated by it.  A person with Downs Syndrome is not ‘suffering’ from it, it is simply part of who they are.

Hence, when Cohen concludes his Spectator piece by arguing ‘if you want to be radical in your politics, you must be conservative with your language’ one must wonder whether he is calling for a return to language that degrades and dehumanises (such as referring to a ‘simple man’) and if so, to what ends?

This is where the issue does go far deeper than language, for Cohen is insistent on equating disability with loss, suffering, pain, incapacity and so on.   While Britain’s post-War welfare state may have abandoned eugenics and embraced the idea that disabled people (especially disabled veterans) could play a productive role, while it may have closed down many institutions, adopted anti-discrimination law and directed resources at supporting people to live in the community, disability continues to be construed overwhelmingly as a ‘deficit’ and it is the extent of this deficit that determines eligibility for State support. Hence governments since 2010 have been able to make deep cuts while arguing that they were protecting ‘the most vulnerable’ – those deemed to have no productive potential – and disability advocates are forced into a game of having to plead their vulnerability and lack of productive potential (attributes which in history have underscored prejudice and discrimination and which as noted above been exploited to sterilise, institutionalise and to kill) in order to safeguard what meagre income and life and limb services remain available to them.  There is nothing radical or progressive about maintaining this situation, or employing language that reinforces it, but without a better story it is understandable that people should keep telling it.

In the first excellent episode of his Radio 4 series The Tyranny if Story, the journalist John Harris talks to the Ed Woodcock and Yannis Gabrial about the working parts of all stories, and how effective communications embody these. In summary, all stories involve a hero (or subject), an adventure (or mission), the possibility that things will be derailed (or an antagonist), the capacity of humans to solve the problem, and emotion (a happy ending, or a tragic ending).   They argue that it is these ‘opposing forces’ that cause us to lean in and listen.   As humans, we need not hear the whole story. A few words – make America great again; take back control – are enough for us to fill the gaps and understand the story

Disability rights advocacy has been about changing the components of the story: where the hero of the piece is not State or voluntary charity, but disabled people themselves, where the adventure is not towards being looked after well, but being the author of ones own life and taking part in society on an equal basis with others, where the antagonist is not the persons impairment or health condition, but the barriers that society has constructed that deny people their right to participate and take charge of their lives, where disabled people are not objects ‘saved’ by others, but equal partners in bringing about social change.

That new story clearly requires a very different form of language, otherwise it cannot be told, and won’t be heard. For any narrative to be effective it has to convey the goals of the storyteller, to avoid rallying feelings, thoughts and ideas that stand in the way of achieving them, or which provide the means to pursue contradictory goals – such as cutting support.

Disability rights advocates could then certainly do with a new compelling narrative, one that relies less on neutral words and euphemism (where terms such as inclusion or independent living, which have no meaning in the wider world, are accompanied by long winded and often contested explanations as to what they do or don’t mean) and which is able to command public support and stand firm in the face of attack.   It has to make clear that investment in financial and practical support is investment in freedom and opportunity, not ‘welfare’, and consciously avoid the tropes which reinforce ideas of passivity and vulnerability. This initial work by the Frameworks Institute offers some useful insights into how a more compelling narrative might develop, but there is much work still to be done.

Cohen is right to say that change won’t come simply because language is policed.  But language change goes hand in hand with social change.  Ultimately, Cohen’s mistake is to call for us to be conservative both in language and politics.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Feeling a part of society, not apart from society – the psychology of inclusion

“Well how sad. A city with such appalling accessiblity as Bristol really hurts. To be made so unwelcome by a place’s physical make up is like an apartheid that can only change when the environment does. To live with tears at your soul.”

Mik Scarlett, via Twitter

Perhaps as a result of its Marxist origins, disability rights discourse in the UK has tended towards a highly materialist account of the barriers and inequality faced by disabled people: focusing on income, physical access or employment discrimination for example.  Even when talking about prejudicial behaviour, such as disability hate crime, the feelings of those who have endured it, or who fear it and the impact on their sense of their place in the world is rarely discussed.

Various things have collided in the past year to cause me to think about this: during some work I did talking to people with learning disabilities about employment, interviewees consistently highlighted having a role, status and a sense of purpose as being at least as important to them as having money in their desire to work, or in having found a job; conversations begun and curated by Mik Scarlett on social media about the emotional impact of being locked out of society by inaccessibility that says ‘you don’t belong’; the fact that 60% of disabled people who voted in the EU referendum put their cross next to Leave, despite so much evidence that it was not in their self-interest to do so; and this week Margaret Hodge’s recollection of her father’s advice “you’ve got to keep a packed suitcase at the door, Margaret, in case you ever have to leave in a hurry”.

Each of the above speaks to the psychology of inclusion and exclusion and of the desire, as Baroness Jane Campbell recently put it ‘to feel a part of society, not apart from society.’  Looked at through the lens of psychology – both disabled people’s own and that of the wider community – the past decade of cuts to financial and practical support can be seen not only for its damaging effect on material wellbeing, but equally for the way it has often appeared to dismiss disabled people’s very right to be in the world.  Ditto arriving in a city and being literally shut out.   On the flipside, in foregrounding how such negative developments and situations make people feel there may be greater chance of engendering empathy, than in only describing situations that non-disabled people have little if any experience of.   Feelings of hurt, loss, fear and hope are universal; experience of disabling barriers is not.

Great strides have been made on disability rights over the past thirty years, but inclusion remains precarious and far from guaranteed.  Despite the language of rights, inclusion remains something that can be given or taken away and so long as that is how disabled people feel about the world, we are way off our goals,

A recalibrated disability rights agenda should foreground psychology – how people feel about the world they inhabit – and make disabled people’s own sense of purpose, status, belonging and control the chief test of progress, its narrative to the wider world and focus for action.

 

 

 

Middle aged people – time for our revolution!

showbiz_opening_ceremony_4

So I’ve just turned 47, I live with my partner who works full time and we have a beautiful daughter aged 4 who is about to start school. I’m self-employed with a ton of work, which helps pay off a whopping mortgage that comes of living in London, which for all its many advantages is toe-curlingly expensive.  240 miles away, near Wigan, live my mum and my dad, who has Alzheimers. They increasingly need support.  That support seems incredibly hard to find.

How many of you have read that first paragraph and related to at least a fair chunk of it?   How many of you are – like me – trying not to have to imagine what happens when your mum’s not around or able to provide that support? How many of you have found it easy to sit down and plan with your parents, or to find out what’s available?  How many of you are increasingly realising that the answer is: not very much?

How many of you see yourself, your situation and your anxieties reflected in the public debate about social care?  Several years ago it was common to talk of the ‘sandwich generation’ or the ‘care crunch’ but it doesn’t seem to feature anymore (nothwithstanding that it’s very negative way to frame it, which might explain why).  Is our overriding priority really to inherit whatever assets or equity our parents leave behind? Why is that at the forefront of the debate?   Or is it to ensure our collective wellbeing: that our mums and dads will be okay and lead the lives they want to, but without huge personal cost to ourselves and our families today and into the future?

Failing to deal with this today will mean costs that will play out down the generations as we in turn require support but don’t have the private resources or public services to access them – is this the anxiety we want to pass on to our own children?

Unlike adult social care, the debate about childcare is no longer one which regards it as a personal private matter, but a public one.  It makes sense to co-invest as a society in childcare, for the benefits of child development, employers, the economy and our own individual wellbeing as parents.  It is also a vote-winner:  with austerity as its backdrop, a Conservative government introduced 30 hours a week free childcare.  And it hasn’t negated the duty to be good parents, or created a literal ‘nanny State’.  We need to think about support for adults in the same way and co-invest:  free, high quality support to protect and promote the wellbeing of adults requiring support and those with who they share their lives, that of their adult children and grandchildren, in the interests of employers and the economy.

We will inevitably have to look out for our parents as they age more than we did when we were all younger, and that’s quite right, just as parenthood brings so many more responsibilities.  But that’s fundamentally different from having to put our own lives on complete hold to provide that support, just as most of us don’t anticipate giving up work to look after our children until they go to school.

People like you and me need to marshal our collective voices, lift our heads up above the immediate challenges we face, set forth a compelling alternative vision and be seen as a political force to be reckoned with.   We need to put an end to the ‘carers as heroes’ narrative peddled by politicians and NGOs, not because those providing care and support aren’t often making huge sacrifices, but because they are, they shouldn’t be, and it’s coming at a huge – and increasing – cost to them, the people they support, their families, our economy and our society.

England needs a ‘wellbeing revolution’ through a collective investment in our shared future.  Ours is the generation to bring it about.  Who’s in?

 

 

 

To lead by example, the UK government should embrace disability inclusive development at home as well as abroad

Next week the UK Government Department for International Development (DfID) will host a ‘Disability Summit’, with the express aim of putting disability at the heart of international development.   DfID is a world leader on international development, and more recently on disablity inclusive development.   Disability inclusive development make sense given – as in the UK –  disabled people form a disproportionately high percentage of all living in poverty globally.  It is not a matter of ensuring that implementation of the Sustainable Development Goals reaches disabled people; it’s a fact that the goals will not be reached unless disability is at the very heart of how they are implemented.  Fusing the UN Convention on the Rights of Persons with Disabilities (CRPD) with the SDGs offers a clear pathway for achieving this.  DfID should be celebrated for showing such leadership.

However, given the impact of austerity measures and reforms on disabled people’s rights here in the UK, and the damning verdict of the UN Committee on the Rights of Persons with Disabilities following its examination of the UK in 2017, it is quite understandable that UK disability activists are intent on highlighting the UK government’s credibility gap as the host of this summit.  It is not only the retogressive impact of these specific measures on disability rights in the UK that creates this credibility gap, is it also the clear failure domestically to create policy coherence between the UK’s approach to ‘development’ (as in policy related to addressing disability related poverty) and the promotion of human rights and equality of opportunity.

There are, I guess, various ways UK organisations can harness the summit to highlight this credibility gap.  Some will protest the summit itself, while others are organising a parallel summit to debate these issues.  Others are taking part in the summit and plan to use their platform to both embrace and celebrate DfID’s agenda, while highlighting the negative journey in the UK.  It will be interesting to see whether it plays out in a similar way to, for example, how the deporation of members of the Windrush generation gathered media attention as a result of the issues being spotlighted during the Commonwealth Heads of Government Meeting.

Perhaps most productive would be the see the summit as an opportunity to put the SDGs on the domestic map.  The UK government is of course already subject to the SDGs.  Unlike the predecessor Millenium Development Goals, the SDGs are designed to be truly universal, but from my vantage point have yet to play any significant part in domestic debates about disability-related poverty or rights.  Rather than just emphasising a credibility gap to strive to embarass the government, why not propose a clear agenda for closing it,  asking the UK government to set forth a programme of disability inclusive development here at home in order to be the change it purports to seek in the wider world?