The 1%

Justice for Nico

“A failure of leadership at Southern Health. A lack of transparency, missed opportunities, raising the prospect that some deaths could have been avoided if earlier incidents had been properly investigated” 

So said Michael Buchanan in his damming BBC headlining report on Southern Health NHS yesterday. But I can’t be sure at his point if Nico would have been living, safe and well today if “earlier incidents” had been investigated, or in fact if his death was one of those earlier incidents.

Death as “incident”. When you describe it like that you can almost see how easily a culture of non-investigation could thrive in a large NHS Trust.  After all, investigation takes, time, money, resources and a willingness to be thorough and painstaking.  It also requires you to believe that such an investigation is important and necessary.

Of the 12.000 unexpected deaths in Southern Health care, 30% of mental health…

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Mortality Statistics and the Right to Life

For those who ventured to read the Mortality Statistics: ESA, IB and SDA released yesterday by the DWP, there is a very interesting claim / disclaimer, highlighted in bold in the introduction :

Any causal effect between benefits and mortality cannot be assumed from these statistics.
This is repeated again and again after each statistic is given.
The question is: Can the DWP be held responsible, under the ECHR, for these deaths?
The right to life, under Art. 2 ECHR, guarantees the right not to be unlawfully killed. As such, speaking in the abstract, WCA would not constitute lethal force. Neither would withdrawing IB.
But what about a case where a person with disability has her IB closed, and she starves to death? This does look like a violation of Art. 2 ECHR.
The obvious point therefore is that, even we assume, in good faith, that ‘no causal effect can be assumed from these statistics’, there is a procedural positive obligation to investigate deaths which come under the scope of Art. 2.What national authority is best placed to do this?
My argument is that, to the extent that the DWP is not collecting sufficient data about these deaths, the DWP is violating Art. 2 ECHR.
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Some Thoughts on Lamb and Veto

This post, which I hope will be the first of a series, aims to provide some brief thinking on Norman Lamb’s consultation ‘No voice unheard, no right ignored‘.

My knee jerk reaction is that very little will change through this consultation. The best example: living close to home and in settings of one’s choice. As the consulation acknowledges, this is something that the LB Bill has flagged as a major issue, and quite rightly so.

This is the lengthy quotation from page 19 of the consultation

‘We have listened closely to stakeholders, including the Justice for LB and LB Bill campaign, about strengthening people’s rights, so we want to hear your views on whether it should be more explicit, that in carrying out their functions on:
• either, in the case of LAs, decisions about individual living arrangements;
• or, in the case of NHS commissioners, arranging the provision of assessment and treatment services in hospital inpatient settings (for example lasting over 1 month);
that NHS commissioners and LAs should have regard for:
• the need to ensure people remain in or close to the community that matters to them;
• the need to maintain links with family and friends;
• the need to maintain opportunities to participate in work, education, training or recreation;and
• the principle of delivering support or treatment in the least restrictive setting possible, consistent with the wishes and choices of the individual;
The default attitude and cultural approach should be that the statutory bodies have to make efforts to do what is in line with people’s wishes and recognise the importance of people being in their own home or community or close to or with their family, if that is their choice, rather than people, supported by their families, having to fight to justify why this matters.’

Seeking to consult on such restrictive choices is simply not enough. The consultation still accepts as a starting point that NHS commissioners and LAs ‘should have regard for’ absolutely essential things, such as family ties. This does not guarantee effective protection of family ties.

From a mainstream human rights perspective, placing someone in care (like an ATU) far away from home breaks (or risks to break) family ties. This is an interference with the right to respect for private and family life that both the person with disability has, but also her family, under Art. 8 ECHR. If the interference is disproportionate, then the interference becomes an unjustified infringement. We know all this from the ECtHR’s case law on children being removed to foster care, such as Olsson v Sweden. In terms of disability rights, this reasoning is strengthened by reading Art. 8 ECHR in light of Art. 19 CRPD on independent living.

If this the legal position, then reality suggests that it is very difficult to get this right respected, as evidenced by Mark Neary‘s experience.

If we want to be serious about strengthening the rights of persons with disability to live in the community and maintain family ties, then persons with disability should at least have a veto right againt arrangements about where to live. For example, the LA introduces a care plan that involves relocation in an ATU, far from home, and the person with disability does not want this. The veto should be respected by the LA and then the burden would fall on the LA to go to court and get the veto reversed. With legal costs being what they are, the LA might prefer to propose a care plan that is mutually acceptable.

Certainly, such a veto right approach is no magic bullet. But it does get you somewhere.

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Sir Terry Pratchett, Death, and Social Care

At the time of writing this post, the news have spread about three young men with disability who have died in social care settings: Connor Sparrowhawk, Thomas Rawnsley, and Nico Reed.

There is also the excellent initiative of the LB Bill and the recent launch of the Department of Health’s ‘no voice unheard, no right ignored’ consultation.

All this is familiar to anyone interested in issues of social care. Why mention them? With the news of the death of Sir Terry Pratchett, one quote from his work has struck me: It’s not worth doing something unless someone, somewhere, would much rather you weren’t doing it’.

All these initiatives are troubling to the status quo.

There is inertia at the heart of the system of social care. The passing of the Human Rights Act did little to change the legal position of persons with intellectual disability: persons with intellectual disability, when deemed to lack capacity, cannot exercise their human rights. The passing of the Mental Capacity Act was a minimalist intervention: it codified the legal position of the common law on best interests and the choice was made not to link the Mental Capacity Act with the Human Rights Act.

However, the issue is not just legal: what is adult social care about, in everyday practice? what are social workers trying to achieve? what are ATUs supposed to be doing? It’s all very well to talk about overarching aims, e.g. inclusion, independent living etc. I cannot see any tangible effort being made towards empowerment of persons with disability.

Radical change is required. Upheaval and mayhem is the way to go. The best interests test must be abandonded, in favour of a human rights test. The Convention on the Rights of Persons with Disabilities must be incorporated in an Act of Parliament and become part of English law. That will be the beginning of true change. And yes, it will cost the earth. Unless this happens and until this happens, disability rights will resemble new wine in old skins.

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What would you do?

As a researcher, I was drawn to disability rights when I first read about the early sterilisation case law of the English courts. I developed a theoretical argument as to how to protect the rights of persons with disabilities under English law. As an academic, I am doing what I am supposed to do.

Then real life happens and kicks in the door of the ivory tower of research. The death of LB was such an event. How do I, as an academic, researcher and human being respond to this?

The central claims of my research is that we need more human rights for persons with disabilities in every single context of their daily lives. We need to enact the CRPD under UK law. We need to make every healthcare and social care professional accountable to human rights (if not by means of civil liability, then criminal liability). We need to develop awareness of persons with disabilities as bearers of rights, to which correspond correlative duties from all of us.

Faced with LB’s death, the best and most useful thing I can do is to do more research, which strengthens the central claims of my research.

I was planning, for a long time, to submit an abstract to the Art Historians Association Conference on Hogarth’s Scene in a Madhouse. Based on the social model of disability, I considered that a reading can be made of this engraving (or the painting on which the engravings are based) which depicts the disabling gaze in the interaction of the fashionable ladies and the inmates of the asylum. The powerpoint of the presentation is here. As the participants in the conference stream also noted, Hogarth is also ironically asking: Who is mad? What are those ‘normal’ ladies doing in a place like this? What folly is this?

Our current law and social practice, even after 300 years from Hogarth’s time, has not rendered such questions meaningless. We retain laws and practices which disable and disempower persons with disabilities. Time for change.

R.I.P. LB.

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The Disabled Body in Refugee Law

Yesterday I presented a paper at the Migration Law Network Conference ‘A Sea of Troubles’ at Birkbeck University. A wholehearted thanks go to Eddie Bruce-Jones, who was convening the stream and Rebecca Mallett and Katherine Runswick-Cole, for their insights as to how to conceptualise the disabled body. Their most recent work, an exciting monograph entitled Approaching Disability is forthcoming by Routledge.

My paper was entitled ‘The Disabled Body in Refugee Law’. The powerpoint slides are here. The rationale behind my paper was to apply some of the very exciting theories on disability and the body to refugee law. The claim of my paper was that, with a few exceptions, current refugee law and practice views asylum seekers with disabilities as abject. This in turn, mirrors deeply held social and legal practices about disability, which view disability either as tragedy or as something abject, despite the change that the social model of disability has introduced. The way forward in refugee law with regards to asylum seekers with disabilities is to recognise them as persons with potential and the ability to flourish. 

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Police duties towards persons with disabilities: Work in progress

Tomorrow, 11/02/14, I will be presenting a paper at the Disability Research Forum at Sheffield Hallam University. I want to thank Dr. Rebecca Mallett for having me. I have uploaded the powerpoint at Slideshare here.

This presentation is very much work in progress. Since I read the judgment in Finnigan I knew there was something that made me uneasy about this case, but I could not put my finger on it. I hope this paper and the discussion afterwards will clear things up in my head.

Below is a very short summary of the points I am going to raise in my paper.

This paper examines several recent judgments which relate to duties of the police towards persons with disability. In Dordevic v Croatia, available here, the ECtHR held that the police should protect persons with disabilities from hate crime, even if the instances of hate crime are low level harassment. Failure to do so violates Art. 3 ECHR.

English case law has also provided some examples of a disability-sensitive approach to policing. The well known case of ZH v the Commissioner of the Police for the Metropolis, confirmed by the Court of Appeal, available here, has held that the police must offer reasonable accommodations when carrying out their police duties towards persons with disabilities. In that case, the police acted on misguided emergency and did not consult with carers as to how to protect an autistic teenager from falling into a pool. The subsequent restraint of the autistic person left him with post-traumatic stress disorder and exacerbated his epilepsy. The Court of Appeal affirmed that the actions of the police constituted assault and battery, false imprisonment, failed to provide reasonable accommodations and violated Articles 3,5 and 8 of the ECHR. Impressive #fail.

In the case of Finnigan v Chief Constable of Northumbria, available here, the disability-sensitive approach is confirmed. The police need to revise their procedures, in accordance with their equality duty, and provide reasonable accommodations to persons with disabilities, otherwise this will constitute unlawful discrimination. The police conducted a number of house searches in the appellant’s home, who was D/deaf. Even though the appellant preferred to use British Sign Language, he could also communicate through other means. On the facts of the case therefore, the appellant did not suffer any detriment from not having been provided with reasonable accommodation (i.e. a BSL interpreter), so his appeal was dismissed.

The claim i will be making in my presentation is that this line of reasoning does not fully capture what is legally at stake here. If a person is Deaf, i.e. identifies him/herself as part of the Deaf community and uses BSL as the primary means of communication, not providing a BSL interpreter is discriminatory in the same way that a search on someone’s person cannot be conducted by a police officer of the opposite sex. Saying that the appellant did not suffer any detriment could be regarded as audist – an expression of audiocentric view of the case. Not providing a BSL interpreter for a Deaf person arguably also violates Art. 9 CRPD, by denying accessibility to alternative means of communication. This point is debatable, as the Deaf community does not necessarily view itself as disabled.

At any extent, even though I consider that Finnigan does not fully capture the issues relating to sign language and D/deafness, the importance of this case and the other two already mentioned is that they require the police to review their procedures. The best way forward is for the police not simply to examine what their equality duty requires, but to conform to best practices which eradicate any ableist or, in the case of Finnigan, audist effects.

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