Below is a cut and paste copy of the text of the Law Commission's consultation programme form, together with my submission within the rubric of the form, asking for them to work to repeal UK Canine Breed Specific Legislation. They rejected this, and their rationale contained various problems, as outlined in my previous blog post here "Canine Breed Specific Legislation and Irrationality in UK Law" (Monday 14 April 2014).
I have left out my personal details such as address and telephone number only.
I have bolded my own writing for ease of reference.
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The Law Commission
Steel House
11 Tothill Street
London
SW1H 9LJ
020 3334 0252
programme@lawcommission.gsi.gov.uk
Dear consultee
The Law Commission carries out law reform projects with the aim of making the law fair, simple, clear and cost-effective.
We are currently consulting on what new areas of law should be addressed in our next programme of law reform. To do this, we are asking: where is the law failing to work properly? Please use this questionnaire to tell us where you think there is a significant problem with the law. We want to know what you think is wrong and what practical problems arise. Please give us as much information as you can, even if you cannot answer all the questions. If we need to know more, we may contact you.
What types of problem will we investigate?
Not all legal reform is suitable for the Law Commission. Please tell us about a problem only if it relates to the law and is:
causing substantial unfairness, or
widely discriminatory or disproportionately costly, or
caused by laws or policies that are complex and hard to understand or
caused by laws or policies being out of step with modern standards.
Please also tell us if you think it would be beneficial to bring together (consolidate) a number of statutes that all deal with the same area of law into a single new Act. That might just require the relevant legislation to be redrafted or might involve reform of some of the underlying law. Proposals for consolidation that do not involve substantial law reform will be considered separately from the law reform programme, but we are happy to receive suggestions for such work as part of this consultation.
Our law reform programme will not include subjects where the considerations are shaped primarily by political judgements (for example, abortion, immigration, membership of the EU, the Human Rights Act, capital punishment, decriminalisation of drug use) or issues of established Government policy, such as taxation. We will not consider problems that relate only to a particular individual’s experience of the law as opposed to a more general problem. We do not work on issues that arise only in Scotland or Northern Ireland.
How we make decisions
When considering a potential law reform project, we are guided by our Protocol with Government (see http://lawcommission.justice.gov.uk/docs/Protocol_Lord_Chancellor_and_Law_Commission.pdf) which is intended to ensure that our recommendations have the best possible chance of becoming law. Some key points that we will look at when considering a project are:
How important is the project: to what extent is the law unsatisfactory (eg, unfair, unduly complex, inaccessible or out of date)? What are the potential benefits of reform?
Is the independent, non-political Commission the most suitable body to conduct the project?
Are the necessary resources (for example, sufficient relevant experience, project-specific funding) available to enable us to carry out the project effectively?
Would the project require involvement from the Welsh Government and/or the Scottish or Northern Ireland Law Commissions?
We will also assess whether there is likely to be Government support for a project. In order for a project to form part of our programme, a Government department must confirm that it has a “serious intention” to take forward law reform in that area. If Government does not seriously intend to see the law reformed there is no realistic prospect of any recommendations we make becoming law.
What happens next?
We will review all responses before drawing up a list of potential projects, where appropriate working with the relevant Government departments. As set out in the Law Commissions Act 1965, the Lord Chancellor will decide the final contents of the Twelfth Programme. We expect this to be during 2014.
We are likely to receive a large number of responses but can only accept a small number of projects for the Twelfth Programme; for our Eleventh Programme we received over 200 responses, which led to 14 new projects. We understand you may be disappointed if your proposal is not taken forward but please be assured we are grateful for your contribution. If you have any questions about the consultation process, please contact us on 020 3334 0252 or via programme@lawcommission.gsi.gov.uk.
Kind regards
The Law Commission
Please send us your response no later than
Thursday 31 October 2013.
Twelfth Programme of Law Reform consultation response
Please answer as many of these questions as you can, as fully as you can. If necessary, continue on additional sheets. Please also indicate where you are not able to provide an answer.
Please tell us about yourself:
Name: Angela Kennedy
Address
(Please tick one or more box)
Member of the public Yes
Third sector/voluntary sector Commercial sector/business
Nature of third sector/business organisation:
Practising lawyer Academic Yes
Specialist area: Specialist area:
Member of the judiciary Government official
Court or tribunal: Department:
Local authority staff member Parliamentarian
Other (please state):
Consultation Principles: The Law Commission follows the Consultation Principles set out by the Cabinet Office, which provide guidance on type and scale of consultation, duration, timing, accessibility and transparency. The Principles are available on the Cabinet Office website at:
https://update.cabinetoffice.gov.uk/resource-library/consultation-principles-guidance.
We treat all responses as public documents in accordance with the Freedom of Information Act and we may include the names of respondents and attribute comments in any publication relating to this consultation. If you want your submission to remain confidential, you should contact us before sending your response. (Please note that we disregard automatic IT-generated confidentiality statements.)
In general terms, what is the problem that requires reform?
Specific Legislation (BSL), that is, part 1 of the Dangerous Dogs Act, needs to be repealed. The legislation can be demonstrated to be perversely unfair and irrational, does not provide safety for the public, has led to many dogs being destroyed needlessly, or have their lives severely proscribed leading to adverse quality of life, criminalises people unfairly, and is causing widespread, needless distress to many families in the UK. I believe the BSL can be demonstrated by the evidence below to be causing substantial unfairness; to be both widely discriminatory and disproportionately costly; and to be irrational (and therefore incoherent and difficult to both enforce and understand).
Can you give an example of what happens in practice?
For example, if you are a solicitor or barrister, you might describe how the problem affects your clients.
I am a dog owner and an academic, a social science lecturer and researcher, with a research interest in the social and material effects (on both people and dogs) of breed specific legislation (or BSL), and in public and state construction and management of risk. I made a submission to the Select Committee on Dog Control and Welfare last year which was published by them (see below). I believe this submission provides a more detailed summary than I can give here, and would advise that it be read in its entirety.
The general problems of BSL in practice are as follows:
Family dogs of 'bull-breeds' ('molosser' type, of all shapes and sizes and various breed mixes, but even including pedigree, Kennel Club registered Staffordshire Bull Terriers), are being seized just for looking a certain way (the so-called 'pit-bull type'), according to a highly subjective standard (there is no such genetic breed of 'pit-bull'). These dogs have been killed summarily if signed over by the owners to police in good faith, leading to dog welfare organisations, and solicitors, to advise owners never to sign over their dog to police on seizure.
In the court process, they are either ordered to be killed (for example because one owner was disabled - the case of Lennox the dog in Northern Ireland), or forced to wear a muzzle and lead in public for life (and be tattooed). The burden of proof that a dog is NOT a 'pit-bull type' is on the owner-defendant (which I have been given to understand, though am not sure, might be unprecedented in British criminal law), and this is - logically - impossible to disprove because the assertion of 'pit-bull type' is not done in a scientific way - but is instead subject to subjective beliefs of the 'enforcer'. It is rather like trying to disprove the existence of God to a believer. DEFRA's guidance refers to a 'pit bull' fancier's magazine from the 1970s: the "American Dog Breeders Association standard of conformation as published in the Pit Bull Gazette, vol 1, issue 3 1977". To date I have not been able to access this document. DEFRA have so far failed to respond to my request for this, failing their own targets for response. I contend that this is odd in itself: a document ostensibly needed by law enforcers should be easily accessible.
The DEFRA 'guidance for enforcers' (listed below in the literature section) gives, on page 16, guidance for identifying 'pit bull types'. The language used is overwhelmingly subjective in its description. Examples of this include (but are not limited to) 'good', 'light', 'fine', 'about equal', 'nearly', 'old-fashioned pump handle', 'athletic appearance' [One could immediately ask which 'athletic' appearance? The weightlifter? The sprinter? The footballer? The sumo wrestler?]. In addition, certain characteristics can be said to be present in many dogs. There is no unique characteristic of a 'pit bull', especially as there is, genetically, no specific breed of 'pit bull'. The so called 'pit bull' (or even the 'American Pit Bull Terrier') is not recognised by the Kennel Club as a breed in the UK. Nor are the other three breeds that are deemed 'illegal', However, it is also noteworthy that DEFRA give no 'standards' to identify the three other 'illegal breeds': the Japanese Tosa; Dogo Argentino; Fila Brasileiro. Even pedigree Staffordshire Bull Terriers are apparently not protected under the law from being subjectively deemed 'pit bull type', even if they are genetically demonstrated to be such, or are Kennel Club registered.
The stigmatizing effect for families is great, and the opportunities for socialising and exercise for dogs is severely curtailed: and these measures are available only for dogs with impeccable records of non-aggression. If a dog is 'dog-reactive' (even if not a threat to humans) they may be killed. Yet all dogs are potentially dog reactive in certain circumstances. Dog-owners are criminalised for owning a dog that by genetic chance, has grown to merely look like a subjectively asserted 'type'. It can be (and has been) argued there is a form of canine 'racial profiling' going on, an irrational process.
There is evidence to suggest that BSL is often passed as an example of 'panic policy making', or even as 'policing a crisis', i.e a show of political force (of being 'tough on law and order') on an easy target, which has very little to do with the issue of risk management.
Injuries to humans by dogs need to be considered in a risk management and epidemiological context. Dog-bite fatalities are, for example, extremely rare. According to DEFRA's website in 2012, there were 5 fatalities from 2007-2012 (an average of one a year). To put the relative risk of death from dog-bite into perspective: In 2010, 1,850 people were killed in road traffic accidents, with 1,901 killed in 2011, according to government figures. North American figures show that one of the largest source of lethal danger to children is from family caregivers (see Bradley, 2008: 21-22). To compare the two categories of causes of death in children would require a graph 8 feet tall in order to incorporate the ‘death by caregiver’ category. Figures from the Home Office indicate that on average 2 women a week are killed by a male partner or former partner. To place the risk of injury from dog-bite into perspective, as with all injuries, the description of ‘serious injuries’ is itself subjective and subject to instability in definition, but life-threatening injuries due to dog-bite also appear to be rare. The relative risk of dog bites was studied, for example, by Kahn et al (2003) who found dog bite injuries were about one quarter as frequent as road traffic casualties and about one third as frequent as burns at home. Child attendance at Accident and Emergency departments due to dog bite equalled less that 0.24% of all children attending Accident and Emergency departments. This is not to trivialise dog-related injuries, especially in children. However the low relative risk of dog-bite injuries has to be taken into context if rational and safe social policy and law are to be made. This information may seem counter-intuitive to the perception of risk from ‘dangerous dogs‘, but this is likely to be because of the moral panic (Cohen, 2002) around dogs that is a common feature in current media reporting practices, where rare events are reported, but appear to be more frequent in occurrence because of the frequency of reporting in the media.
With fatalities being so rare, and in general, the relative risk of dog bite being so low (especially considering the enormous amount of dogs and dog-human interaction in the UK) it is impossible to provide a scientifically rigorous, let alone definitive, relative risk related to breed. It is also relevant, for example, that of the four so-called ‘banned breeds’ in the UK, there has been, to my knowledge and after research, no fatalities recorded from dog-bites from any of the Japanese Tosa, Dogo Argentino or Fila Brasileiros breeds. As regards the category of so-called ’pit-bull’, because of the gross discrepancies in how this so-called ’breed’ in conceptualised in the UK, the establishment of a scientifically rigorous, let alone definitive, relative risk related to 'pit bulls' or even 'pit bull types' is impossible.
Ironically, the prohibition of organised fighting does not appear to be specifically delineated within British law. Very little, if any, positive progress to eliminate organised dog fighting has apparently been made.
To which area(s) of the law does the problem relate (please tick one or more box)?
Administrative or public law YES Criminal law YES
Property or land law Family law
Trusts and wills Commercial or contract law
Consumer law Regulatory law
Planning and environment YES Don’t know POSSIBLY
Other (please state):
We will be looking into the existing law that relates to the problem you have described. Please tell us about any court/tribunal cases, legislation or journal articles that relate to this problem.
You may be able to tell us the name of the particular Act or a case that relates to the problem.
Below is a list of selected publications. There are many more, and I and others can certainly point towards more literature if required, or provide at least some of these as PDFs:
1. My submission to the Select Committee on Dog Control and Welfare is available via this URL: http://www.publications.parliament.uk/pa/cm201213/cmselect/cmenvfru/writev/dogcontrol/dog27.htm
Other submissions can also be accessed via this link.
2. The Select Committee's report can be accessed here: http://www.parliament.uk/business/committees/committees-a-z/commons-select/environment-food-and-rural-affairs-committee/inquiries/parliament-2010/dog-control-and-welfare/
3. The Dangerous Dogs Act 1991 can be accessed here: http://www.legislation.gov.uk/ukpga/1991/65/contents
4. Discussion of problems of Breed Identification template in Victoria, Australia, with similar problems to the UK:
http://bslaustralia.org/blog/2011/07/01/breedidtemplate/
5. Article on the problems of Breed Specific Legislation and how it affects pedigree dogs such as Staffordshire Bull Terrier. Although Australian, very similar problems are presenting in the UK:
https://attachment.fbsbx.com/file_download.php?id=621669067877955&eid=ASsoLVdUolGx_LVaWaSif29hNQDumGCt7lVs4ML8DSnzR43IUkhfnxjeTNuayEuFjlA&inline=1&ext=1375614422&hash=ASuNWAjrIJ6zMZz1
6. Bradley, J. (2005) Dogs Bite: But Balloons and Slippers are More Dangerous Berkeley: James and Kenneth Press. (Amazon link supplied here for convenience):
http://www.amazon.co.uk/Dogs-Bite-Balloons-Slippers-Dangerous/dp/1888047186/ref=sr_1_2?s=books&ie=UTF8&qid=1373792694&sr=1-2&keywords=Janis+Bradley
7. Delise, K. (2007) The Pitbull Placebo : The Media, Myths and Politics of Canine Aggression New Jersey: Anubis. Also available as a free pdf at:
http://nationalcanineresearchcouncil.com/publications/ncrc-publications/
8. Kahn, A., Bauche, P. Lamoureux, J. (2003) ‘Child victims of dog bites rated in emergency departments: a prospective survey’, European Journal of Pediatrics 162:254-258.
9. Kaspersson, M. (2008) 'On Treating the Symptoms and not the Cause:
Reflections on the Dangerous Dogs Act' Papers from the British Criminology Conference British Society of Criminology Vol. 8: 205-225.
http://www.britsoccrim.org/volume8/13Kaspersson08.pdf
10. Lodge, M. and Hood, C. (2002) ‘Pavlovian policy responses to media feeding frenzies? Dangerous dogs regulation in comparative perspective’ Journal of Contingencies and Crisis Management 10, 1: 1-13.
11. Article on BSL in the U.S. by a North American lawyer:
http://www.americanbar.org/content/newsletter/publications/gp_solo_magazine_home/gp_solo_magazine_index/pitbull.html
12. Information from a dog breed genetic testing company about the impossibility of establishing a genetic 'breed' of 'pit bull' (see FAQ answer to the question "Does Wisdom Panel (TM) Insights test for "Pit Bull"?) :
http://www.wisdompanel.co.uk/faq.html
13. DEFRA's "Guidance for enforcers" (particularly note page 16):
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/69263/dogs-guide-enforcers.pdf
14. DEFRA's guidance refers to the "American Dog Breeders Association standard of conformation as published in the Pit Bull Gazette, vol 1, issue 3 1977" To date I have not been able to access this document.
15. R v Knightsbridge Crown Court ex p Dunne; Brock v DPP [1993].
16. Statement by Sarah Fisher about her role in the case of Lennox the dog:
http://www.tilleyfarm.co.uk/News.shtml
17. Huffington Post article on the widely covered case of Lennox:
http://www.huffingtonpost.co.uk/joan-k-smith/an-outrage-in-belfast-the_b_1504739.html
18. Article on kennelling costs incurred by the police: http://www.bbc.co.uk/news/uk-16972657
19. Statement by the American Humane Society on uselessness of BSL, with other references:
http://www.americanhumane.org/animals/stop-animal-abuse/fact-sheets/breed-specific-legislation.html
20. Klaassen, Buckley and Esmail academic article in 'Injury' journal:
http://www.dogtrainingireland.ie/documents/klaussen1.pdf
21 American Bar Association Report to the House of Delegates:
http://www.mspca.org/programs/animal-protection-legislation/animal-welfare/companion-animal-welfare/american-bar-association-resolution-on-repealing-bsl.pdf
22. Cohen, S. (2002) Folk Devils and Moral Panics: 30th Anniversary Edition: Creation of Mods and Rockers London: Routledge.
23. Cohen, J. Richardson, J. (2002) ‘Pit Bull Panic’ Journal of Popular Culture 36, 2: 285-317.
24. Statement by the Kennel Club about BSL:
http://www.thekennelclub.org.uk/item/3227/23/5/3
25. Lord Redesdale's Dog Control Bill:
http://services.parliament.uk/bills/2010-11/dogcontrolhl.html
Can you give us information about how the problem is approached in other legal systems?
You might have some information about how overseas courts or tribunals approach the problem.
I have included information in the literature section here: items 4, 5, 6, 7, 11, 21, contain relevant information about other legal systems. I should point out that the problems in BSL in UK are found in other legal systems, and that some legal systems are repealing BSL in favour of 'breed neutral' dog control laws.
Examples where BSL has been repealed (or voided), and 'breed neutral' legislation passed (often after studies demonstrating the futility of such legislation) include but are not limited to: the Netherlands (2008); Italy (2009); Administrative Court of Berlin (2002); certain U.S. regions (e.g. Ohio); certain Canadian regions (e.g. Calgary). Organised objections to BSL can be found in nearly all countries that have BSL, my research has found.
Within the United Kingdom, does the problem occur in any or all of England, Wales, Scotland or Northern Ireland?
This problem occurs in all of England, Wales, Scotland and Northern Ireland.
What do you think needs to be done to solve the problem?
I believe complete Repeal of the Breed Specific Legislation (that is, Part 1) of the Dangerous Dogs Act is needed, and continued evolution of rational breed neutral legislation to ensure safe and responsible dog ownership. Crucially, I believe that very little needs to be done to reform the legislation in this way.
What is the scale of the problem?
This might include information about the number of people affected this year or the number of cases which were heard in a court or tribunal over a particular period.
As far as I know and after research, there are no figures for national rates of seizure and prosecution of owners of bullbreeds under Breed Specific Legislation. However, there is some evidence available that might given an indication of the scale of the problem nationally:
1. There was a recent 'blitz' in Liverpool (which appears to be a regular occurence) by the police, in which just under 50 dogs were seized, though the breakdown of how many were due to BSL and how many due to other reasons has not been publicised. In 2011, it was reported that 'hundreds' of dogs were seized in a similar 'blitz':
http://www.liverpoolecho.co.uk/news/liverpool-news/hundreds-dangerous-dogs-seized-merseyside-3364951
2. In 2012, the Metropolitan Police are reported as seizing 'nearly 800' dogs:
http://www.bbc.co.uk/news/uk-england-london-21485508
3. There is the apparent evidence obtained by FOI of the following:
http://www.endangereddogs.com/EDDRDDAShocker.htm
"A Freedom of Information (FOI) request, submitted by a member of the Pet Owners Parliament, has revealed that a total of sixty dogs have died while under the care of the Metropolitan police force in little over a year...Figures released earlier this week show that on average, the Met Police seized one dog each day under the Dangerous Dogs Act between April 2007 and 23rd May 2008 and an average of one in every seven dogs held, or one dog each week, died during their time in kennels. The FOI reply also revealed that the “majority” of these deaths were from illnesses although specific statistics on causes of death are not kept."
What would be the benefits of reform? In particular, can you identify any:
economic benefits (costs of the problem that would be saved by reform); or
other benefits, such as societal or environmental benefits?
For example, if the problem is one which must usually be resolved in court, court fees might be payable; this money might be saved if the problem was reformed. If it involves consulting a solicitor or barrister, legal costs might be relevant. Or, if the problem was one which caused significant costs to businesses, you might be able to tell us how much time or money businesses would save.
I believe the benefits of reform would fall in the following areas:
1. Repeal of BSL would save on court fees and legal costs, costs of police and other agencies manpower on a useless objective (for example, the most recent blitz on 'pit bull types' undertaken by Liverpool police), kennelling costs etc.
2. Dog welfare - as dogs will not either be killed, or have their lives severely proscribed, needlessly. This will also mean families will not be subject to enforced seizure, killing, or severe limitations imposed on their loved pet. They would also not be forced to pay for exorbitant insurance fees, or tattooing their pets (currently required under the legislation).
3. Public safety and welfare- the focus on certain breed types, and what they look like, appears to have caused a tendency for other dog breed owners to downplay their own responsibility for control of their dogs. Fair and equitable treatment of bull-breeds will enable all owners to develop their skills as responsible dog owners. Currently (especially as there is a large amount of media hype around bull-breeds) people are demonized if owners of bull breeds such as Staffordshire Bull Terriers, American Bulldogs, and their many crosses, especially if owners are working class males. This is not conducive to safe and responsible dog ownership for such owners, who may be afraid to seek advice on dog behaviour, training techniques, even vet care, once they realise their dogs might be summarily seized if they are noticed. Fear among the bull-breed owning community (in all demographics) of having their non-aggressive dogs summarily seized and killed appears very high at present. This is very evident among social network users, for example. There is evidence of some people committing suicide and developing mental health problems due to grief, after their dogs have been killed under BSL.
4. It should also be remembered that the relative risks of dog attacks are actually small, and what is more there is no sound evidence that bull breeds of any type (including any dog subjectively deemed 'pit bull type') pose more risks than other, permitted breeds. Therefore a large amount of money is being wasted on policing non-aggressive dogs (and their owners) purely because of their looks.
5. The relatively small amount of work needed to repeal the BSL part of the DDA, in relation to the benefits and cost savings, would be highly cost-effective, I would argue.
If this area of the law is reformed, can you identify what the costs of reform might be?
The costs of reform might include, for example, the cost of the legal profession and judiciary undertaking training to learn about a new statute.
I do not foresee any costs of reform apart from the cost that would apply to repealing any other law.
Does the problem affect certain groups in society, or particular areas of the country, more than others? If so, what are those groups or areas?
As an example, if the law relates to agricultural land, it might affect farmers and their families more than the general population.
This legislation appears to disproportionately affect working class people of all demographics (though especially young males), as bull-breeds (especially the Staffordshire Bull Terrier) are popular with working class people, although more and more people of other demographics appear to have become enamoured with them, especially as so many bull-breeds appear to come into animal rescues.
In your view, why is the Law Commission the appropriate body to undertake this work, as opposed to, for example, a Government department, Parliamentary committee, or a non-Governmental organisation?
Successive governments appear to be swayed by the "ideology" of the issue - including media misrepresentation of bull-breeds as 'devil dogs', problematic use by police of the term 'status dog', and some public (I would argue misguided) perception of risk and consequent fears. There may be a vested interest in parading a 'tough on law and order' facade, though using a very easy target, even if there is no resulting actual gain in public safety. There does appear to be a 'moral panic' (Cohen, 2002) with regard to bullbreeds. I believe that the Law Commission would inevitably be working on examining the issue from a specifically rational perspective pertaining to jurisprudence, and that this methodical work will uncover how problematic BSL actually is, and why it should be repealed. This would be in marked contrast to Government and Parliamentary approaches so far. Many non-Governmental organisations globally have analysed BSL, found it unfair, irrational and not useful to public safety, but have been unfortunately ignored by governments.
Have you been in touch with any part of the Government (either central or local) about this problem? What did they say?
Appeals and petitions, in a wide variety of forms, have been made to successive governments since 1991 by many people. In recent years, nation wide demonstrations have been regularly held in protest at BSL. There has been a remarkable intransigence by government representatives on this issue. As just one example (and as is evident in their Report and Executive Summary included in the literature bibliography above), the recent Select Committee on Dog Control and Welfare, despite repeated calls from dog behaviourists, and organistions such as the Dogs Trust, Kennel Club, and the RSPCA to repeal BSL, and evidence supporting the repeal of BSL being brought to their attention, nevertheless recommended extending BSL as the government wishes. Various organisations and individuals such as the Dogs Trust, Battersea Dog's Home, and solicitor Nick Freeman have worked to promote the Staffordshire Bull Terrier breed (a breed inordinately adversely affected by both the legislation and consequent moral panic), yet this appears to have fallen on deaf ears as far as most government representatives are concerned.
Is any other organisation such as the Government or a non-Governmental group currently considering this problem? Have they considered it recently? If so, please give us the details of their investigation of this issue, and why you think the Law Commission should also look into the problem.
I have mentioned the Select Committee on Dog Control and Welfare above. Various organisations and individuals both nationally and internationally have considered the issue - some of which are stated in the relevant literature section of this form.
Thank you for your response.
Please send it to us by Thursday 31 October 2013.
Send to: Twelfth Programme Project Officer
Law Commission
Steel House
11 Tothill Street
London SW1H 9LJ
Tel: 020 3334 0252
Email: programme@lawcommission.gsi.gov.uk
Fax: 020 3334 0201
Friday, 4 July 2014
Sunday, 27 April 2014
Carers should act in solidarity - not martyrdom
Regarding the deaths of the three disabled children in New Malden, Surrey, and the apparent charging of their mother with murder, and the media coverage of the case, I felt the need to say this yesterday elsewhere:
"As some people will know, I am a carer, to my daughter Stevie. My own and my daughter's lives (since she got ill in childhood) have been made hell, both by the illness, but particularly by Social Services and the NHS, throughout and ongoing. My daughter and I are in solidarity with each other, have always been, and place the blame/anger where it belongs, and fight those agencies as best we can. Some others don't however, internalising the prejudice and callousness they suffer, turning it in on themselves, or worse, the people they are caring for. It doesn't help that we (carers) are constructed as martyrs either, especially in the press (as is currently happening) and few are able to resist that construction. And the state benefits from all of that, while lives are destroyed. In my opinion, carers need to become more politically organised, within a rights-based discourse (and not a 'martyr' discourse) in solidarity with the disabled people they care for. We've certainly been doing this since Stevie got ill, and intend to continue. There is a lot that can be said about this latest case, or more accurately perhaps, the media coverage of it so far (also some chilling 'comments by the public'), though this status may not be the place. What I will say though is that it is based on a lack of respect for both disabled people and carers, despite the hand-wringing and crocodile tears. When taken with the 'scrounger' rhetoric employed by the government, and the 'authors of your own misfortune' rhetoric that gave rise to that (yes, that's where my book comes in): it indicates some extremely sinister attitudes towards vulnerable people. If I appear a little too 'political' for some, there's obviously good reason for my actions."
Friends also pointed out to me some other issues:
1.That disabled people and carers have been positioned as competing groups, their need for support most often seen as an 'either or' situation;
2.That is is actually an issue of domestic violence when intimate caregivers harm or kill those close to them, with the dynamics of spouse-battering, as the media uses similar victim-blaming language and language that supports the violent person who snapped ("it was a crime of passion," "he just loved her so much he snapped," etc.);
3.Care is actually a crisis situation, and caregivers need more support, but also to not be depicted as martyrs or heroes but rather as allies and given additional outside support as needed, so that disability is not always thrust into a dynamic where one or more parties stay powerless, but rather true support and enabling of freedom stay at the forefront, so that disabled who need care and their caregivers are mutually supported and given what they need;
4.That most literature on caregivers is based largely on unsafe assumptions i.e. that a caregiver will even be available (when for some disabled people they are hard to come by and nobody in a family 'steps up' indeed there may be problems in family relationships preventing this etc), and that there will be financial support from some mysterious sources.
5.That both disabled people and their carers often live in fear and in crisis because of the lack of resources and support accessible to them;
6. That there has been an implied justification of these apparent killings, whereas if the children were not disabled, there would be an outcry.
These voices will likely not be heard in mainstream media. The seductive discourse of carer as (potentially violent) martyr has so far prevailed, hence my need to include my own and other, more critically analytical and political voices, here.
"As some people will know, I am a carer, to my daughter Stevie. My own and my daughter's lives (since she got ill in childhood) have been made hell, both by the illness, but particularly by Social Services and the NHS, throughout and ongoing. My daughter and I are in solidarity with each other, have always been, and place the blame/anger where it belongs, and fight those agencies as best we can. Some others don't however, internalising the prejudice and callousness they suffer, turning it in on themselves, or worse, the people they are caring for. It doesn't help that we (carers) are constructed as martyrs either, especially in the press (as is currently happening) and few are able to resist that construction. And the state benefits from all of that, while lives are destroyed. In my opinion, carers need to become more politically organised, within a rights-based discourse (and not a 'martyr' discourse) in solidarity with the disabled people they care for. We've certainly been doing this since Stevie got ill, and intend to continue. There is a lot that can be said about this latest case, or more accurately perhaps, the media coverage of it so far (also some chilling 'comments by the public'), though this status may not be the place. What I will say though is that it is based on a lack of respect for both disabled people and carers, despite the hand-wringing and crocodile tears. When taken with the 'scrounger' rhetoric employed by the government, and the 'authors of your own misfortune' rhetoric that gave rise to that (yes, that's where my book comes in): it indicates some extremely sinister attitudes towards vulnerable people. If I appear a little too 'political' for some, there's obviously good reason for my actions."
Friends also pointed out to me some other issues:
1.That disabled people and carers have been positioned as competing groups, their need for support most often seen as an 'either or' situation;
2.That is is actually an issue of domestic violence when intimate caregivers harm or kill those close to them, with the dynamics of spouse-battering, as the media uses similar victim-blaming language and language that supports the violent person who snapped ("it was a crime of passion," "he just loved her so much he snapped," etc.);
3.Care is actually a crisis situation, and caregivers need more support, but also to not be depicted as martyrs or heroes but rather as allies and given additional outside support as needed, so that disability is not always thrust into a dynamic where one or more parties stay powerless, but rather true support and enabling of freedom stay at the forefront, so that disabled who need care and their caregivers are mutually supported and given what they need;
4.That most literature on caregivers is based largely on unsafe assumptions i.e. that a caregiver will even be available (when for some disabled people they are hard to come by and nobody in a family 'steps up' indeed there may be problems in family relationships preventing this etc), and that there will be financial support from some mysterious sources.
5.That both disabled people and their carers often live in fear and in crisis because of the lack of resources and support accessible to them;
6. That there has been an implied justification of these apparent killings, whereas if the children were not disabled, there would be an outcry.
These voices will likely not be heard in mainstream media. The seductive discourse of carer as (potentially violent) martyr has so far prevailed, hence my need to include my own and other, more critically analytical and political voices, here.
Monday, 14 April 2014
Canine Breed Specific Legislation and Irrationality in UK Law
In my last post here, I wrote about Bob Crow's support of my attempts to get canine breed specific legislation (BSL) repealed, and mentioned one strategy I had undertaken, the result of which I was awaiting at the time of Bob's death.
A few days later, that result came through. I had written to the Law Commission, in response to their call for proposals, to get certain unfair laws changed. I demonstrated why Section 1 of the Dangerous Dogs Act (the part pertaining to BSL) is unfair, irrational, wasteful of resources, and a futile way of dealing with any problems that may (or indeed may not) be related to dog welfare and control, or public safety.
The Law Commission turned down my proposal. The reasons for this rejection are, in my opinion, inadequate, lazy and irrational in a number of ways. Their rationale for the rejection was as follows:
"We have decided not to include your project in our 12th Programme because it is fundamentally a practical matter better dealt with by veterinary experts, and others with expertise in dog breeds and behaviour, in conjunction with the Government."
The problems with this rationale are:
1. Law is not made by any sort of 'expert' as such, but within a judicial system. Therefore repeal of BSL was within the remit of the Law Commission.
2. The evidence that I supplied (from myself and others) constituted an adequate form of expertise which could have (indeed should have) been taken into consideration by any party in a position to repeal the legislation.
3. By deeming BSL a 'practical matter' by the logic of the Law Commission, ANY law is merely a 'practical matter best left to the experts and the government', meaning no-one should even bother asking the Law Commission to examine problematic legislation, and no legislation should ever be repealed by the judicial system or subject to public objection and campaigns to change. Rape in marriage could still be legal because "it's fundamentally a practical matter".
4.By the Law Commission's logic, laws on driving safely constitute "fundamentally a practical matter" best left to Casualty doctors and surgeons to deal with.
The following was the remit of consideration for proposals by the Law Commission:
"Please tell us about a problem only if it relates to the law and is:
causing substantial unfairness, or
widely discriminatory or disproportionately costly, or
caused by laws or policies that are complex and hard to understand or
caused by laws or policies being out of step with modern standards."
As the consultation period is now over, I am making public my proposal, made to the Law Commission last year, which followed the rubric of their questions. I will exhibit this on this blog in another post, and have already exhibited it on my facebook group "Strategies to repeal BSL UK" (searchable on Facebook). Alternatively, people may request a copy by various routes (I'm @academicange on Twitter, for example) and I can arrange.
Since I sent this proposal to them last year, I have learned two things. One is that the "burden of proof" on the defendant, while condemned by lawyers, is not unprecedented, as I had originally believed. See A. Ashworth and M. Blake, 'The Presumption of Innocence in English Criminal Law' [1996] Crim LR 306 for more on this.
The second is, that due to the efforts of another person using the Freedom of Information Act, and to whom I am extremely grateful, I was finally able to access the unstable and poorly sourced document used by police, and recommended by DEFRA, to deem a dog of 'pit bull type'. This document is from a 1970's pit-bull fancier newsletter of all things, and frankly has to be seen to be believed. It demonstrates how utterly unstable the category of 'pit bull' actually is, to the point that any dog could be said to be one, and this ties in with both what is known about canine genetics and the so-called 'pit bull', and the issue of function versus form, as discussed in Karen Delize's The Pit Bull Placebo.
Canine breed specific legislation can be demonstrated to be perversely irrational in many ways. The Law Commission's decision to ignore appears part of a tapestry of irrationality in UK law, that I've only in recent years perhaps come to appreciate more fully.
Tuesday, 11 March 2014
In honour of Bob Crow
Bob Crow, general secretary of the National Union of Rail, Maritime and Transport Workers (RMT), died early this morning at Whipps Cross Hospital, Leytonstone. His death was unexpected, and this news is all over the media.
I knew Bob personally. He and I were 'dog park friends' (more muddier than, say, 'facebook friends'). We also often met around the streets of our shared local community, sometimes as he walked home from the Tube station. His dog is friends with my dog, Suzie (this sort of thing is always quite important). There's a special bond between dog walkers in a community: we tend to meet each other in all sorts of inclement weather; we see each other with flu, or backache, or other complaints. It's the life of the slave to a canine and we accept it.
But yes, I tend to share Bob's politics as well to a certain degree. I also admired his formidable ability to represent his members and stand up for what he believed in, when neoliberal forces have worked so much to erode that way of living for so many. I also admired his apparent sangfroid, particularly in the face of all the personal attacks he endured. He could also deliver a hilarious deadpan witticism: the one about having to sit under a tree reading Marx for a 'holiday' being an example of that.
Yet my own experience of Bob has also been of a warm, gentle family man who spoke lovingly of his family and his dog, who also had a great generosity of spirit when it came to supporting others in their fights against injustice. I will always be particularly grateful for his support of one of my own undertakings in this context.
I have been researching, and campaigning against, canine breed specific legislation (BSL) for some years now. In 1991, BSL was brought in by a Tory government as a means to distract from their political crisis at the time, to appear 'tough on crime', but on a very soft target. It has caused intense suffering of dogs and their loving owners, is irrational and wasteful of resources (not to mention dogs' lives), and is kept going by successive governments despite the calls for its repeal from the various leading dog welfare and other agencies. It seems to function rather too well as a political red herring, in my opinion.
Bob and I had been talking about this draconian legislation since last year (or rather I had been bending his ear about it in various ways). Having been made aware of the problems, Bob was trying to find ways in which he could help or support people like me in getting the legislation repealed. I also kept him updated with some of the developments in strategies I had undertaken (one in particular on which I am still waiting). Today, I have been hearing about various other ways in which people experienced Bob's kindness and generosity of spirit.
I last saw Bob a couple of weeks ago, outside Londis. He called me Sue. Loads of people do - we all tend to get called by our dogs' names!
I feel privileged to have known him personally, as part of our local community, especially as a fellow dog-walker. I'm also fully aware of his qualities as a formidable political campaigner and union leader who made things difficult for the political elite, and why that was important. I feel that his death is a massive loss, to many of us, on so many levels. There is currently so little political resistance to the neoliberal hegemony that has had us in it's vice-like grip for so long. Bob was one of those stalwarts who was resisting. I hope more of us can be more stalwart in our resistance, but today I, and it's clear a lot of other people, are wrestling with feelings of desolation.
My deepest condolences go to Bob's family, who have suffered the greatest loss.
I knew Bob personally. He and I were 'dog park friends' (more muddier than, say, 'facebook friends'). We also often met around the streets of our shared local community, sometimes as he walked home from the Tube station. His dog is friends with my dog, Suzie (this sort of thing is always quite important). There's a special bond between dog walkers in a community: we tend to meet each other in all sorts of inclement weather; we see each other with flu, or backache, or other complaints. It's the life of the slave to a canine and we accept it.
But yes, I tend to share Bob's politics as well to a certain degree. I also admired his formidable ability to represent his members and stand up for what he believed in, when neoliberal forces have worked so much to erode that way of living for so many. I also admired his apparent sangfroid, particularly in the face of all the personal attacks he endured. He could also deliver a hilarious deadpan witticism: the one about having to sit under a tree reading Marx for a 'holiday' being an example of that.
Yet my own experience of Bob has also been of a warm, gentle family man who spoke lovingly of his family and his dog, who also had a great generosity of spirit when it came to supporting others in their fights against injustice. I will always be particularly grateful for his support of one of my own undertakings in this context.
I have been researching, and campaigning against, canine breed specific legislation (BSL) for some years now. In 1991, BSL was brought in by a Tory government as a means to distract from their political crisis at the time, to appear 'tough on crime', but on a very soft target. It has caused intense suffering of dogs and their loving owners, is irrational and wasteful of resources (not to mention dogs' lives), and is kept going by successive governments despite the calls for its repeal from the various leading dog welfare and other agencies. It seems to function rather too well as a political red herring, in my opinion.
Bob and I had been talking about this draconian legislation since last year (or rather I had been bending his ear about it in various ways). Having been made aware of the problems, Bob was trying to find ways in which he could help or support people like me in getting the legislation repealed. I also kept him updated with some of the developments in strategies I had undertaken (one in particular on which I am still waiting). Today, I have been hearing about various other ways in which people experienced Bob's kindness and generosity of spirit.
I last saw Bob a couple of weeks ago, outside Londis. He called me Sue. Loads of people do - we all tend to get called by our dogs' names!
I feel privileged to have known him personally, as part of our local community, especially as a fellow dog-walker. I'm also fully aware of his qualities as a formidable political campaigner and union leader who made things difficult for the political elite, and why that was important. I feel that his death is a massive loss, to many of us, on so many levels. There is currently so little political resistance to the neoliberal hegemony that has had us in it's vice-like grip for so long. Bob was one of those stalwarts who was resisting. I hope more of us can be more stalwart in our resistance, but today I, and it's clear a lot of other people, are wrestling with feelings of desolation.
My deepest condolences go to Bob's family, who have suffered the greatest loss.
Wednesday, 15 January 2014
Nick Hewer indulges himself in some fat-shaming on Countdown: Channel 4 usual glib response
This email exchange between me and Channel 4 Complaints department is pretty self-explanatory (warning: may trigger shock and horror that I am a woman of bigger size):
My original complaint:
"Nick Hewer's comment to the contestant, to the effect that he looked like he'd a few 'dinners' (the contestant's word) was offensive to the extreme. It clearly distressed the contestant, and was in effect an insult to any viewer of Countdown who may be bigger than thin. It was a cruel, mean-spirited example of 'fat-shaming' . I now will never consider going on Countdown, because of the evident risk of being humiliated on air because of my own weight, and my daughter, who is very slim, is of the same opinion."
Channel 4's predictable response (which is NOT a 'place filler' for a further investigation and response, but intended as a final response):
"Dear Ms Kennedy,
Thank you for contacting Channel 4 Viewer Enquiries regarding COUNTDOWN.
We re very sorry to hear that Mr Hewer's comments regarding one of our contestants were of concern to you; please be assured that these concerns have been noted and logged for the information of those responsible for our programming.
Thank you again for taking the time to contact us. We appreciate all feedback from our viewers; complimentary or otherwise.
Regards,
Kara Waters
Channel 4 Viewer Enquiries"
And my response to that:
"Thank you for your reply, but unfortunately this means nothing. This is a serious complaint about a serious issue: the incitement of prejudice and bigotry against a group because of their bodies. Channel 4, rightly, would not give such a glib, uninterested response, as you have given me below, if there had been racism involved, but the same principle applies. It completely ruined my own and my daughter's enjoyment of the programme, and I've been watching Countdown since it began. There has been other, milder laughing at fat people on Countdown before, usually related to the words that have been constructed. This latest incident however was a downright insult to viewers and (a) should not have been aired (b) an apology given to the contestant, who was clearly adversely affected by the incident. Hewer then telling him to have a pie on the way home, at the end of the programme, turned Countdown into car-crash TV. You are, again rightly, clearly able to prevent bigotry on the grounds of race, sexuality, gender and disability on the programme: but your answer here indicates you have no interest in preventing bigotry against fat people, which is shameful on your part.
Yours sincerely
Angela Kennedy"
I have no confidence this will be taken seriously by Channel 4. For a long time bigger people (i.e. who hold larger amounts of body fat) have been victims of what was once often characterised as the 'last acceptable form of prejudice'. Since then we are almost constantly seeing a mainstream media who seem determined to incite this newer form of bigotry, along with the older ones: the poor and disabled are particularly victimised in recent years, though this does not mean people escape bigotry because of their race, ethnicity or sexuality either. Bigotry against women has been enjoying something of a renaissance recently as well. If people don't stand up to it, it will get a lot worse for many more groups. While this may seem trivial to some, it is the 'micro-aggressions' like this one, that happen every day without objections by others, that help cement the acceptance of bigotry in a culture: hence my feeling the need to pursue it.
My original complaint:
"Nick Hewer's comment to the contestant, to the effect that he looked like he'd a few 'dinners' (the contestant's word) was offensive to the extreme. It clearly distressed the contestant, and was in effect an insult to any viewer of Countdown who may be bigger than thin. It was a cruel, mean-spirited example of 'fat-shaming' . I now will never consider going on Countdown, because of the evident risk of being humiliated on air because of my own weight, and my daughter, who is very slim, is of the same opinion."
Channel 4's predictable response (which is NOT a 'place filler' for a further investigation and response, but intended as a final response):
"Dear Ms Kennedy,
Thank you for contacting Channel 4 Viewer Enquiries regarding COUNTDOWN.
We re very sorry to hear that Mr Hewer's comments regarding one of our contestants were of concern to you; please be assured that these concerns have been noted and logged for the information of those responsible for our programming.
Thank you again for taking the time to contact us. We appreciate all feedback from our viewers; complimentary or otherwise.
Regards,
Kara Waters
Channel 4 Viewer Enquiries"
And my response to that:
"Thank you for your reply, but unfortunately this means nothing. This is a serious complaint about a serious issue: the incitement of prejudice and bigotry against a group because of their bodies. Channel 4, rightly, would not give such a glib, uninterested response, as you have given me below, if there had been racism involved, but the same principle applies. It completely ruined my own and my daughter's enjoyment of the programme, and I've been watching Countdown since it began. There has been other, milder laughing at fat people on Countdown before, usually related to the words that have been constructed. This latest incident however was a downright insult to viewers and (a) should not have been aired (b) an apology given to the contestant, who was clearly adversely affected by the incident. Hewer then telling him to have a pie on the way home, at the end of the programme, turned Countdown into car-crash TV. You are, again rightly, clearly able to prevent bigotry on the grounds of race, sexuality, gender and disability on the programme: but your answer here indicates you have no interest in preventing bigotry against fat people, which is shameful on your part.
Yours sincerely
Angela Kennedy"
I have no confidence this will be taken seriously by Channel 4. For a long time bigger people (i.e. who hold larger amounts of body fat) have been victims of what was once often characterised as the 'last acceptable form of prejudice'. Since then we are almost constantly seeing a mainstream media who seem determined to incite this newer form of bigotry, along with the older ones: the poor and disabled are particularly victimised in recent years, though this does not mean people escape bigotry because of their race, ethnicity or sexuality either. Bigotry against women has been enjoying something of a renaissance recently as well. If people don't stand up to it, it will get a lot worse for many more groups. While this may seem trivial to some, it is the 'micro-aggressions' like this one, that happen every day without objections by others, that help cement the acceptance of bigotry in a culture: hence my feeling the need to pursue it.
Tuesday, 17 December 2013
*** UPDATE 12th March 2014: I've re-written this post, to make it more coherent. This only means I've added a couple of sentences and changed the order of the bullet points, for ease of reference***
10 reasons why disabled people (and their supporters) are against
'euthanasia, 'assisted suicide' and 'assisted dying': a short summary
Objections to euthanasia, assisted suicide or assisted dying are most frequently portrayed in the media as being motivated by religiosity, and/or a right-wing, 'anti-choice' rhetoric. This often functions as a 'straw man', and ignores the reasons most often given by disabled people and their supporters for why these practices are dangerous to disabled people. Below is a short summary of the reasons why disabled people (and their supporters) in the UK, who may not be (indeed are often not) religious, 'right-wing' or 'anti-choice' in most areas of life at all, are objecting to legalisation of euthanasia, assisted suicide and assisted dying. This does not necessarily constitute an exhaustive list of the grave concerns people are giving as reasons for their objections. Nevertheless I have tried to make this list as comprehensive, but also as concise, as possible. The ten main reasons people object to euthanasia, assisted suicide and assisted dying are:
1. The 'Right to die' is always in danger of becoming 'duty to die', in neoliberal ideology in particular, for people with physical impairment who need help in activities of living (people who cannot commit suicide by themselves) and are treated, and encouraged to see themselves, as 'burdens'. This ideology reaches doctors, families and social services.
2. Related to this, current mistreatment of disabled people by the UK government has been leading to more suicides anyway . Treatment of disabled people as 'burdens on the state' is in place already as state policy. Suicide rate because of denial of welfare would be likely to accelerate even more with legalisation of 'right to die' for disabled people. Health care economic concerns, where the public has been exhorted to 'tread lightly on the state' (Emke, 2002), have also been promoted for many years. There is a real risk of exhortation of people with medical impairments to present themselves for killing should it be legalised.
3. It is always very hard to ascertain whether someone is choosing suicide rationally or because of (a) being under duress (b) depressed (due to medical impairment, lack of adequate treatment such as pain relief, or life circumstances), both of which could lead to irrational decisions to commit suicide, which may change once the duress, bad situations or even ill health causing a specific bout of depression is eliminated. But these are unlikely to be presented as solutions to the person at risk of suicide due to disability or ill health.
4. It is clear that the 'right to die' is only desired for disabled and ill. If it were different, physically fit people would be allowed to procure lethal drugs, so that they did not have to die by hanging, jumping off buildings or jumping in front of trains (for example), but instead die in a manner of their choosing (comfortably in their beds, for example). The suicide of a fit person is invariably seen as a tragedy, something to be prevented. This demonstrates that disabled and ill people are being specifically deemed as having lives not worth living. There is special pleading for their 'right to die'. If it is believed they have lives not worth living, then the 'logical' conclusion from that is that they are better off dead (whatever the disabled or ill person believes).
5. However discomfiting to acknowledge, the above all have precedents in the state policies of Nazi Germany, where disabled people were the first to be systematically killed. Even the notion of choice (or 'right') to die was initially used in Nazi propaganda and quickly turned to 'duty' (though in some aspects ran concurrently - indicating supporting 'duty to die' was the hidden desire). Michael Burleigh's research, delineated in his book Death and Deliverance, demonstrates that this happened, and the ideology behind it is demonstrated in Hitler's Mein Kampfe and elsewhere.
6. With people who have any difficulty communicating - others may make the wrong decision for them to die, whether deliberately, or by mistake. Thus involuntary euthanasia is always a material risk.
7. Changes of laws always engender the capacity to set a precedent for further changes to the law. While the issue of abortion is separate to that of euthanasia, assisted suicide or assisted dying, the UK law on abortion is an example of precedent. Now UK law allows abortion effectively up to birth for disabled foetuses. The legalising of abortion in the first place, in 1967, is what allowed new law to be made, legalising a differential treatment of those with disability. Canine breed specific legislation (BSL) is another example. There was no BSL in the UK before 1991. Then legislation banned certain dog breeds, but also, in the case of the 'pit bull' (genetically no such breed) any dog that is deemed, by very subjective measures, of 'pit bull type' is covered. This means even pedigree dogs can be deemed of type and therefore 'illegal' (including pedigree Staffordshire bull terriers). The law is highly unpopular, condemned by many experts and dog welfare organisations, and can be shown to be irrational. But not only do successive governments maintain it and refuse to repeal: a select committee on Dog Control and Welfare, despite being made aware of the myriad objections to and problems with BSL, have actually recommended that other breeds be added to the legislation as they see fit. The 1991 legislation set a precedent. These are just two examples of laws that engendered precedents allowing further changes to laws. The possibility of voluntary euthanasia/assisted suicide/dying leading to involuntary euthanasia is a reasonable concern, when historical precedents, and current state treatment of disabled and ill people, indicate lack of respect for their autonomy in living, as is the case now in the UK. For example, Belgian government members have recently voted to allow euthanasia for children “if the parents consent”, and there is evidence that people are killed under the Belgian state policy even when they do not ask to be so (Chambaere et al, 2010).
8. Often those advocating the 'right to die' invoke notions of 'choice', but are usually looking to give doctors power over life and death decisions, not individual members of the public the 'right' to die as they wish. This is a highly problematic intention. Doctors have no special knowledge of ethical problems, and have conflicts of interest, particularly as agents of the state presiding over health care economic decisions. Despite the cultural romanticizing of doctors' (and nurses') roles, they have no automatic special wisdom in understanding this issue and the ethical problems it generates. Despite the fervent support for the Liverpool Pathway by some, Rabbi Neuberger's report showed how easily health professionals failed patients in 'end of life' situations under it. Nor are state officials in any guaranteed privileged position to 'choose wisely' on this matter, governed, as they are, by neoliberal ideology informing health care economics and welfare provision.
Although I have specific criticisms of it, one of the most useful books I have read on this subject is Fabian Tassano's The Power of Life or Death: Medical Coercion and the Euthanasia Debate:
"In spite of much recent talk about autonomy and patient rights, there is mounting evidence that patients' views come a poor third in the determination of treatment after cost considerations and 'expert' opinion. This is particularly true for the elderly, the disabled and the handicapped. Yet medical practitioners are perceived as benevolent authority figures who always act in their patients' best interests. As a result, they have been given increasing discretion in deciding who is to live and who is to die. This book argues that patients need to recognise that medicine is not necessarily on their side. It is written for the general reader who is concerned with the question of involuntary treatment and non-treatment."
My main problem with Tassano's argument is that it neglects to address how such problems occur in private health care systems, focusing on 'socialised' systems instead. But the problems he outlines above are major concerns to be addressed publicly, though they have not been in this debate (at least publicly) very much at all.
9. That these problems are rarely, if ever, discussed in the public discourse on euthanasia/assisted suicide/dying (including where they have been subject to legalisation), and opponents of legalisation are subjected to ad hominem misrepresentation, usually centring on alleged 'religious beliefs' is odd. The lack of open discussion being afforded to all 'stakeholder' groups is itself suspect, indicating that 'full and frank discussions' are being censored, and that some people may have interests in doing this: therefore a more cautious appraisal of moves to legalise death-making decisions is indicated. Related to this is that research claiming positive results and lack of problems (such as involuntary euthanasia) in the academic literature is generally not critically appraised, but taken at face value. The critically analytical person should find this suspect. More analytical appraisal of those systems already in place are needed, and which need to be publicised, from an ethical, sociological and scientific perspective, before an open and accurate appraisal can be made of how these systems are proceeding, and their effects.
10. The problems outlined above all have the capacity to intersect with and compound each other, causing increased, multiple jeopardies, that is, discrimination and prejudice based on various forms of social stratification such as race, gender, class, sexuality, age and, in this case, for disabled and ill people, to the point of wrongful killing of them. For at least all of these reasons - it is clear that the UK are not in a position to be able to 'make safeguards' against the above abuses of any legalisation of euthanasia, assisted suicide, or 'assisted dying' as yet - and may never be. Therefore legalisation of any of these at this point in time would present fundamental dangers to the rights, and lives, of disabled and ill people in the UK.
REFERENCES
Burleigh, M. Death and Deliverance (2002) London, Pan.
Chambaere, K. et al 'Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey' CMAJ May 17, 2010.
http://www.cmaj.ca/content/early/2010/05/17/cmaj.091876.full.pdf+html
Emke, I. (2002) ‘Patients in the New Economy: the "sick role" in a time of economic discipline’ Animus 7: 81-93.
Erstelt, S. 'Belgium: Senate Approves Measure Allowing Doctors to Euthanize Children' Life News 12 December 2013:
http://www.lifenews.com/2013/12/12/belgium-senate-approves-measure-allowing-doctors-to-euthanize-children/
Neuberger, J. et al Independent Report: Review of Liverpool Care Pathway for dying patients (2013)
https://www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients
Hitler, A. Mein Kampf (2007) Jaico Press.
Tassano, F The Power of Life or Death: Medical Coercion and the Euthanasia Debate (1999) Oxford, Oxford Forum.
10 reasons why disabled people (and their supporters) are against
'euthanasia, 'assisted suicide' and 'assisted dying': a short summary
Objections to euthanasia, assisted suicide or assisted dying are most frequently portrayed in the media as being motivated by religiosity, and/or a right-wing, 'anti-choice' rhetoric. This often functions as a 'straw man', and ignores the reasons most often given by disabled people and their supporters for why these practices are dangerous to disabled people. Below is a short summary of the reasons why disabled people (and their supporters) in the UK, who may not be (indeed are often not) religious, 'right-wing' or 'anti-choice' in most areas of life at all, are objecting to legalisation of euthanasia, assisted suicide and assisted dying. This does not necessarily constitute an exhaustive list of the grave concerns people are giving as reasons for their objections. Nevertheless I have tried to make this list as comprehensive, but also as concise, as possible. The ten main reasons people object to euthanasia, assisted suicide and assisted dying are:
1. The 'Right to die' is always in danger of becoming 'duty to die', in neoliberal ideology in particular, for people with physical impairment who need help in activities of living (people who cannot commit suicide by themselves) and are treated, and encouraged to see themselves, as 'burdens'. This ideology reaches doctors, families and social services.
2. Related to this, current mistreatment of disabled people by the UK government has been leading to more suicides anyway . Treatment of disabled people as 'burdens on the state' is in place already as state policy. Suicide rate because of denial of welfare would be likely to accelerate even more with legalisation of 'right to die' for disabled people. Health care economic concerns, where the public has been exhorted to 'tread lightly on the state' (Emke, 2002), have also been promoted for many years. There is a real risk of exhortation of people with medical impairments to present themselves for killing should it be legalised.
3. It is always very hard to ascertain whether someone is choosing suicide rationally or because of (a) being under duress (b) depressed (due to medical impairment, lack of adequate treatment such as pain relief, or life circumstances), both of which could lead to irrational decisions to commit suicide, which may change once the duress, bad situations or even ill health causing a specific bout of depression is eliminated. But these are unlikely to be presented as solutions to the person at risk of suicide due to disability or ill health.
4. It is clear that the 'right to die' is only desired for disabled and ill. If it were different, physically fit people would be allowed to procure lethal drugs, so that they did not have to die by hanging, jumping off buildings or jumping in front of trains (for example), but instead die in a manner of their choosing (comfortably in their beds, for example). The suicide of a fit person is invariably seen as a tragedy, something to be prevented. This demonstrates that disabled and ill people are being specifically deemed as having lives not worth living. There is special pleading for their 'right to die'. If it is believed they have lives not worth living, then the 'logical' conclusion from that is that they are better off dead (whatever the disabled or ill person believes).
5. However discomfiting to acknowledge, the above all have precedents in the state policies of Nazi Germany, where disabled people were the first to be systematically killed. Even the notion of choice (or 'right') to die was initially used in Nazi propaganda and quickly turned to 'duty' (though in some aspects ran concurrently - indicating supporting 'duty to die' was the hidden desire). Michael Burleigh's research, delineated in his book Death and Deliverance, demonstrates that this happened, and the ideology behind it is demonstrated in Hitler's Mein Kampfe and elsewhere.
6. With people who have any difficulty communicating - others may make the wrong decision for them to die, whether deliberately, or by mistake. Thus involuntary euthanasia is always a material risk.
7. Changes of laws always engender the capacity to set a precedent for further changes to the law. While the issue of abortion is separate to that of euthanasia, assisted suicide or assisted dying, the UK law on abortion is an example of precedent. Now UK law allows abortion effectively up to birth for disabled foetuses. The legalising of abortion in the first place, in 1967, is what allowed new law to be made, legalising a differential treatment of those with disability. Canine breed specific legislation (BSL) is another example. There was no BSL in the UK before 1991. Then legislation banned certain dog breeds, but also, in the case of the 'pit bull' (genetically no such breed) any dog that is deemed, by very subjective measures, of 'pit bull type' is covered. This means even pedigree dogs can be deemed of type and therefore 'illegal' (including pedigree Staffordshire bull terriers). The law is highly unpopular, condemned by many experts and dog welfare organisations, and can be shown to be irrational. But not only do successive governments maintain it and refuse to repeal: a select committee on Dog Control and Welfare, despite being made aware of the myriad objections to and problems with BSL, have actually recommended that other breeds be added to the legislation as they see fit. The 1991 legislation set a precedent. These are just two examples of laws that engendered precedents allowing further changes to laws. The possibility of voluntary euthanasia/assisted suicide/dying leading to involuntary euthanasia is a reasonable concern, when historical precedents, and current state treatment of disabled and ill people, indicate lack of respect for their autonomy in living, as is the case now in the UK. For example, Belgian government members have recently voted to allow euthanasia for children “if the parents consent”, and there is evidence that people are killed under the Belgian state policy even when they do not ask to be so (Chambaere et al, 2010).
8. Often those advocating the 'right to die' invoke notions of 'choice', but are usually looking to give doctors power over life and death decisions, not individual members of the public the 'right' to die as they wish. This is a highly problematic intention. Doctors have no special knowledge of ethical problems, and have conflicts of interest, particularly as agents of the state presiding over health care economic decisions. Despite the cultural romanticizing of doctors' (and nurses') roles, they have no automatic special wisdom in understanding this issue and the ethical problems it generates. Despite the fervent support for the Liverpool Pathway by some, Rabbi Neuberger's report showed how easily health professionals failed patients in 'end of life' situations under it. Nor are state officials in any guaranteed privileged position to 'choose wisely' on this matter, governed, as they are, by neoliberal ideology informing health care economics and welfare provision.
Although I have specific criticisms of it, one of the most useful books I have read on this subject is Fabian Tassano's The Power of Life or Death: Medical Coercion and the Euthanasia Debate:
"In spite of much recent talk about autonomy and patient rights, there is mounting evidence that patients' views come a poor third in the determination of treatment after cost considerations and 'expert' opinion. This is particularly true for the elderly, the disabled and the handicapped. Yet medical practitioners are perceived as benevolent authority figures who always act in their patients' best interests. As a result, they have been given increasing discretion in deciding who is to live and who is to die. This book argues that patients need to recognise that medicine is not necessarily on their side. It is written for the general reader who is concerned with the question of involuntary treatment and non-treatment."
My main problem with Tassano's argument is that it neglects to address how such problems occur in private health care systems, focusing on 'socialised' systems instead. But the problems he outlines above are major concerns to be addressed publicly, though they have not been in this debate (at least publicly) very much at all.
9. That these problems are rarely, if ever, discussed in the public discourse on euthanasia/assisted suicide/dying (including where they have been subject to legalisation), and opponents of legalisation are subjected to ad hominem misrepresentation, usually centring on alleged 'religious beliefs' is odd. The lack of open discussion being afforded to all 'stakeholder' groups is itself suspect, indicating that 'full and frank discussions' are being censored, and that some people may have interests in doing this: therefore a more cautious appraisal of moves to legalise death-making decisions is indicated. Related to this is that research claiming positive results and lack of problems (such as involuntary euthanasia) in the academic literature is generally not critically appraised, but taken at face value. The critically analytical person should find this suspect. More analytical appraisal of those systems already in place are needed, and which need to be publicised, from an ethical, sociological and scientific perspective, before an open and accurate appraisal can be made of how these systems are proceeding, and their effects.
10. The problems outlined above all have the capacity to intersect with and compound each other, causing increased, multiple jeopardies, that is, discrimination and prejudice based on various forms of social stratification such as race, gender, class, sexuality, age and, in this case, for disabled and ill people, to the point of wrongful killing of them. For at least all of these reasons - it is clear that the UK are not in a position to be able to 'make safeguards' against the above abuses of any legalisation of euthanasia, assisted suicide, or 'assisted dying' as yet - and may never be. Therefore legalisation of any of these at this point in time would present fundamental dangers to the rights, and lives, of disabled and ill people in the UK.
REFERENCES
Burleigh, M. Death and Deliverance (2002) London, Pan.
Chambaere, K. et al 'Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey' CMAJ May 17, 2010.
http://www.cmaj.ca/content/early/2010/05/17/cmaj.091876.full.pdf+html
Emke, I. (2002) ‘Patients in the New Economy: the "sick role" in a time of economic discipline’ Animus 7: 81-93.
Erstelt, S. 'Belgium: Senate Approves Measure Allowing Doctors to Euthanize Children' Life News 12 December 2013:
http://www.lifenews.com/2013/12/12/belgium-senate-approves-measure-allowing-doctors-to-euthanize-children/
Neuberger, J. et al Independent Report: Review of Liverpool Care Pathway for dying patients (2013)
https://www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients
Hitler, A. Mein Kampf (2007) Jaico Press.
Tassano, F The Power of Life or Death: Medical Coercion and the Euthanasia Debate (1999) Oxford, Oxford Forum.
Sunday, 3 November 2013
Originally written 6th February 2013.
This statement is also available on pdf here:
http://mywikibiz.com/images/5/55/My_emai...rticle.pdf
My email correspondence with Journalist Michael Hanlon regarding a
proposed Sunday Times article
PERMISSION TO REPOST
Angela Kennedy
6th February 2013
I have today seen comments made by Charles Shepherd on the ME Association Facebook wall, regarding an article being written by a journalist from the Sunday Times:
“Had a fairly long and amicable chat this evening with the journalist who is writing the feature on ME/CFS for the Sunday Times. From what we covered this evening in my hotel I don't think this item is going to be looking at anything new in relation to both politics and research.... So it looks as though this article is going to cover the debate re nomenclature and sub-grouping (ME vs CFS), XMRV saga, PACE trial (including 'recovery' paper and House of Lords debate), CBT and GET - what do they involve? why are they so controversial? and all the usual stuff about hate mail: Who does it? (a minute minority - some of whom probably have a personality disorder rather than ME) And why to they do it? (because they are angry at the lack of biomedical research and clinical trials aimed at people who do not fit into the psychosocial model of causation >> an illness perpetuated by abnormal illness beliefs and behaviours + the resulting deconditioning and inactivity). Not that this justifies this type of activity.”
In light of Dr Shepherd's extremely worrying revelations here, and recent misrepresentations of patient concerns in an academic journal, I believe that I should now reveal that I was approached by a journalist, Michael Hanlon in regard to this proposed article in December 2012. Below is all the email correspondence I had with Mr Hanlon (my only form of interaction with him). I should also explain that I have heard nothing further from Mr Hanlon after I declined the lunch invitation on 7 December 2013.
I had intended to wait until after the article was published before publicising my full correspondence with Mr Hanlon. However, because I am concerned at the content of Dr Shepherd's post above and its implications for how this article will be written, I believe it is important for readers to understand the exact context in which information was given to Mr Hanlon, before the article is published. I believe that journalists have a duty to make fair and accurate representation of the issues they cover and the people they interview, and at this time I am hoping the transparency and accuracy of my own actions here will be mirrored in the Sunday Times article when it is published.
The email correspondence below is in chronological order.
ANGELA KENNEDY
----- Original Message -----
From: Hanlon, Michael
To: angelakennedy372@btinternet.com
Sent: Monday, December 03, 2012 11:10 AM
Subject: ME, XMRV, the PACE trials and Simon Wessely
Dear Angela
I am a science journalist and I have been commissioned to write a piece for the Sunday Times magazine about ME patient-support groups.
This is in the light of recent findings regarding XMRV, the continuing controversies regarding the PACE trials and the recent prize awarded to Simon Wessely.
Would you be prepared to chat with me, either on- or off-the-record?
Best regards
Michael Hanlon
----- Original Message -----
From: ANGELA KENNEDY
To: Hanlon, Michael
Sent: Monday, December 03, 2012 1:49 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Michael,
Thank you very much for your email. I will be very happy to chat with you via email in the first instance, if that is ok. This is because talking by phone is difficult for me because of my daughter's care needs.
I can also send you relevant sources that explain my position in this situation, and if you would like a complimentary copy of my book (of which I presume you are aware) - let me know the address and I will send.
Best wishes
Angela Kennedy
----- Original Message -----
From: Hanlon, Michael
To: ANGELA KENNEDY
Sent: Tuesday, December 04, 2012 10:30 AM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Angela
Thank you for taking time to reply.
I have to say at the outset where I am, what (if any) agenda I have and what I hope to write about. Never believe a journalist who says they don't have an agenda - we all do. But at least I will try to lay my cards on the table.
I have been a science journalist for 20 years and, as such, I count myself as broadly 'pro-science'. I tend to side with sceptics and rationalists, materialists and those who obsess about evidence-based medicine. I distrust homeopathy, people who worry about electrosmog and people who claim to have seen UFOs.
But M.E.? I admit I am baffled. When I first picked up on the whole debate, if that is not too polite a word, between the likes of Simon Wessely who believe that M.E is basically a psychogenic condition that can be treated by CBT and other techniques, and those who insist that M.E. is the result of an infection or immune system malfunction, I was mystified.
My initial reaction has been to side totally with the psychiatrists. I have seen some of the emails and so forth that have been sent, told about the FOI requests, reports to the GMC and so on and find it weird, at best, that this is happening.
But clearly people feel very strongly about this and I want to know why. Perhaps you can tell me?
I have written about many controversies - animal experimentation, global warming, MMR and so on but even a brief delve into the Internet shows me that there is a volcano of an issue here.
So, my first question. You are prominent among those who would like to see ME treated as a 'proper' illness (not psychogenic). What informs this view?
Do you condemn - unreservedly - those small number of people who appear to have issued threats, however vague, against people like Simon Wessely? You are quoted as saying that you believe these threats are a storm in a teacup, that Wessely et al are over-reacting. Is this the case?
I have spoken to Simon Wessely and he seems a decent, humane man. Do you accept that he is decent and humane, even if you disagree with his methods and point of view regarding this disease?
How did you react to the recent news that XMRV is probably not the causal agent of ME?
Did you previously believe it was? If not XMRV, then what do you believe causes ME?
Are you still in contact with Jane Bryant?
Have you ever met your opponents and debated with them? Do you believe it is possible to have a mature and reasoned debate over a matter of what amounts to a major scientific and medical disagreement?
I look forward to hearing from you, and your view on any of these issues.
Best regards
Mike
----- Original Message -----
From: ANGELA KENNEDY
To: Hanlon, Michael
Sent: Tuesday, December 04, 2012 2:03 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Mike,
I will hopefully be able to answer your questions within the next few hours. In the meantime I enclose three links which you should look at to get a reasonably clear idea of where I am actually 'coming from':
1. The link to my book on Amazon gives the first few pages of the Introduction on its 'look inside' facility. The first three pages will I believe be most useful to you, though I would also recommend you read the back cover, which also gives my academic research interests as a social sciences lecturer and researcher.
http://www.amazon.co.uk/Authors-Our-Misf...800&sr=8-1
2. A publicly available statement I have made about dematory claims made about me with regard to Professor Wessely.
http://mywikibiz.com/images/2/2b/Stateme...ssment.pdf
3. My complaint to the Lancet about the PACE trial:
http://mywikibiz.com/images/7/74/Complai...rticle.pdf
Best wishes
Angela
----- Original Message -----
From: ANGELA KENNEDY
To: Hanlon, Michael
Sent: Wednesday, December 05, 2012 1:28 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Mike,
For ease of reference I have preceded your questions with a Q, and my answers with an A (should make things clearer hopefully!)
Firstly I should tell you that I too count myself as (colloquially) 'pro-science' (though with some caveats), with a rationalist, materialist concern that science and social science, proceeds with empirical adequacy, and rational, coherent argument within a critically analytical framework: and that all underlies my critiques of psychogenic explanations for physical illnesses like ME, particularly the analysis I undertake in my book.
I am concerned that you seem to believe FOI requests and reports to the GMC constitute harassment. These are publicly available legitimate courses of action, through official channels, for people who have concerns or complaints about certain situations. I'm confident you would not think anyone who has ever made a complaint to the GMC, written to an employer, or asked for information under FOI is guilty of harassment per se. Journalists use FOI requests, for example. These were mentioned three times on Panorama the other night; and have been used by BBC reporters since 2005:
http://news.bbc.co.uk/1/hi/in_depth/uk/2...efault.stm
There are specific, legitimate and rational reasons people are taking these - again, legitimate - courses of action. As you will have seen from the links I gave you, there are specific reasons I have had occasion to complain about the PACE trial, and write to an employer, neither of which can be remotely considered as 'harassment'. I would say, if I may advise you, that you should dig deeper on those reasons.
Q: So, my first question. You are prominent among those who would like to see ME treated as a 'proper' illness (not psychogenic). What informs this view?
A: Your above comment does not accurately reflect my position. This is why I would ask you to read the first three pages and back cover of my book via the Amazon link I gave you to get an idea of where I am coming from. There are a very important distinctions between your above assessment of my position and what my position actually is, not least being that I do not consider psychiatric illnesses as 'improper' or 'not real', which is what your description implies (whether or not you meant it like that). But to give a summary of where I am coming from: I am concerned about psychogenic misdiagnosis, which leads to psychogenic dismissal of serious physical illness, which leads to patients' lives, health and quality of life being endangered. Psychogenic misdiagnoses have led to tragic, premature deaths, and to prejudicial treatment by health, educational, social and benefits agencies, even communities and families.
It is also untrue that people objecting to psychogenic explanations for ME are doing so out of contempt for mental illness and its sufferers - though that is a myth that gets repeated over and over again.
One thing I think also needs to be remembered is that, no matter what I, or Professor Wessely, the ME community or other doctors think, the WHO classify ME as a neurological illness, and the British government abides by this classification.
1. Q: Do you condemn - unreservedly - those small number of people who appear to have issued threats, however vague, against people like Simon Wessely?
A: I must ask you quote this exactly: "As an academic myself I unreservedly condemn any actual harassment and abuse of researchers. However, raising reasonable objections to something through legitimate means (such as FOI requests or official complaints) is not harassment or abuse. There are specific reasons I have complained about the PACE trial, and written to an employer, neither of which can be remotely considered as 'harassment'."
The other issue you need to consider though - and this is vital - is that hate speech is being waged against a disabled patient group, especially though not exclusively with regard to the claims of 'harassment', that are specifically unsafe i.e. falsely accusing people - who are following legitimate procedures - of harassment, intimidation, and abuse, which is what is being done, when you look carefully at the various claims being made about the community.
ME sufferers are being characterised as 'extremists', 'fanatics', as well as 'malingerers' and 'hypochondriacs'. Their concerns are misrepresented as contempt for mental illness sufferers. They are mocked and told that they cannot be that ill in the first place if they have the energy to comment, an common insult. The historical insult 'Yuppie flu' is repeated as nauseum. Doctors have been involved in inciting this contempt for sufferers, and I discuss this phenomenon in my book.
2. Q: You are quoted as saying that you believe these threats are a storm in a teacup, that Wessely et al are over-reacting. Is this the case?
A: I would be grateful if you could give me the exact place such a 'quote' was made (and by whom), because I have never said this. This is not how I actually speak or write, and it is certainly NOT how I see the situation.
3. Q: I have spoken to Simon Wessely and he seems a decent, humane man. Do you accept that he is decent and humane, even if you disagree with his methods and point of view regarding this disease?
A: It is impossible for me to make an assessment of the character of someone whom I have never met. It's like asking me to say if Robert Pattinson is a 'decent, humane' man. In any case, as both a supporter of the ME community and, importantly, an academic myself, my concern is really not with anyone's 'character', but with highlighting specific problems with claims, and actions, within the fields of science and medicine that might be harming patients.
4. Q: How did you react to the recent news that XMRV is probably not the causal agent of ME? Did you previously believe it was? If not XMRV, then what do you believe causes ME?
A: The vast majority of patients and their supporters are not, and were never, pushing for a 'favorite pathogen'. From my experience, most of us were - still are - merely hoping for science to progress, correctly and ethically, in testing for a possible causative agent. There are, however, reasons to believe there were, and remain, problems with how 'the science' was conducted, following publication of the Lombardi paper.
5. Q: Have you ever met your opponents and debated with them? Do you believe it is possible to have a mature and reasoned debate over a matter of what amounts to a major scientific and medical disagreement?
A: I did try and explain concerns about the PACE trial to Peter White, one of its authors, in a public meeting actually about the trial, but sadly he was not interested in discussing them. It SHOULD be possible to have mature and reasonable debates over this matter, but that is impossible when one 'side', from a position of power (that is proponents of psychogenic explanations for ME), accuses other participants (like patients and their supporters) of harassment, intimidation, and abuse - just because they have raised legitimate objections or concerns through legitimate channels - and misrepresents those concerns, which is sadly what has been happening.
Best wishes
Angela
----- Original Message -----
From: Hanlon, Michael
To: ANGELA KENNEDY
Sent: Thursday, December 06, 2012 1:18 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Angela
Thank you for taking the time to answer my questions.
Would you be prepared to meet with me sometime before Christmas? Happy to buy you lunch on the Sunday Times!
Best regards
Mike
----- Original Message -----
From: ANGELA KENNEDY
To: Hanlon, Michael
Sent: Friday, December 07, 2012 7:39 AM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Mike,
Thank you, that's very kind of you :) Unfortunately I'm just not in a position to do that at the moment - certainly not before Christmas, and to be honest after Christmas feels unlikely, for a variety of reasons around caring for my daughter - and to be honest I've not been too well myself anyway (ongoing anaemia of unknown cause).
But anything else you need to ask me I am happy to answer by email.
There is one thing I forgot to mention in my previous email, regarding insults against ME patients that are repeated over and over again by journalists and academics (and Roger Highfield has just used this insult himself in a tweet!), and that is the irrelevant and laboured association, onto the obvious but entirely coincidental similarity, in the English language, between the acronym for Myalgic Encephalomyelitis, and the first person objective, in order to characterise ME patients’ characters in dysphoric terms. This manifests in phrases like "the Me Me Me lobby" (Highfield's tweet), or in Elaine Showalter's case, this comment in her book Hystories, that the acronym “reflects the patient’s self absorption” . This is being done without irony. It's become, I'd say, an institutionalised, highly prejudicial insult against a disabled group. I discuss the characterisation of ME sufferers (and those of other illnesses deemed psychogenic) in dysphoric terms in detail in my book.
Best wishes
Angela
END OF CORRESPONDENCE
This statement is also available on pdf here:
http://mywikibiz.com/images/5/55/My_emai...rticle.pdf
My email correspondence with Journalist Michael Hanlon regarding a
proposed Sunday Times article
PERMISSION TO REPOST
Angela Kennedy
6th February 2013
I have today seen comments made by Charles Shepherd on the ME Association Facebook wall, regarding an article being written by a journalist from the Sunday Times:
“Had a fairly long and amicable chat this evening with the journalist who is writing the feature on ME/CFS for the Sunday Times. From what we covered this evening in my hotel I don't think this item is going to be looking at anything new in relation to both politics and research.... So it looks as though this article is going to cover the debate re nomenclature and sub-grouping (ME vs CFS), XMRV saga, PACE trial (including 'recovery' paper and House of Lords debate), CBT and GET - what do they involve? why are they so controversial? and all the usual stuff about hate mail: Who does it? (a minute minority - some of whom probably have a personality disorder rather than ME) And why to they do it? (because they are angry at the lack of biomedical research and clinical trials aimed at people who do not fit into the psychosocial model of causation >> an illness perpetuated by abnormal illness beliefs and behaviours + the resulting deconditioning and inactivity). Not that this justifies this type of activity.”
In light of Dr Shepherd's extremely worrying revelations here, and recent misrepresentations of patient concerns in an academic journal, I believe that I should now reveal that I was approached by a journalist, Michael Hanlon in regard to this proposed article in December 2012. Below is all the email correspondence I had with Mr Hanlon (my only form of interaction with him). I should also explain that I have heard nothing further from Mr Hanlon after I declined the lunch invitation on 7 December 2013.
I had intended to wait until after the article was published before publicising my full correspondence with Mr Hanlon. However, because I am concerned at the content of Dr Shepherd's post above and its implications for how this article will be written, I believe it is important for readers to understand the exact context in which information was given to Mr Hanlon, before the article is published. I believe that journalists have a duty to make fair and accurate representation of the issues they cover and the people they interview, and at this time I am hoping the transparency and accuracy of my own actions here will be mirrored in the Sunday Times article when it is published.
The email correspondence below is in chronological order.
ANGELA KENNEDY
----- Original Message -----
From: Hanlon, Michael
To: angelakennedy372@btinternet.com
Sent: Monday, December 03, 2012 11:10 AM
Subject: ME, XMRV, the PACE trials and Simon Wessely
Dear Angela
I am a science journalist and I have been commissioned to write a piece for the Sunday Times magazine about ME patient-support groups.
This is in the light of recent findings regarding XMRV, the continuing controversies regarding the PACE trials and the recent prize awarded to Simon Wessely.
Would you be prepared to chat with me, either on- or off-the-record?
Best regards
Michael Hanlon
----- Original Message -----
From: ANGELA KENNEDY
To: Hanlon, Michael
Sent: Monday, December 03, 2012 1:49 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Michael,
Thank you very much for your email. I will be very happy to chat with you via email in the first instance, if that is ok. This is because talking by phone is difficult for me because of my daughter's care needs.
I can also send you relevant sources that explain my position in this situation, and if you would like a complimentary copy of my book (of which I presume you are aware) - let me know the address and I will send.
Best wishes
Angela Kennedy
----- Original Message -----
From: Hanlon, Michael
To: ANGELA KENNEDY
Sent: Tuesday, December 04, 2012 10:30 AM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Angela
Thank you for taking time to reply.
I have to say at the outset where I am, what (if any) agenda I have and what I hope to write about. Never believe a journalist who says they don't have an agenda - we all do. But at least I will try to lay my cards on the table.
I have been a science journalist for 20 years and, as such, I count myself as broadly 'pro-science'. I tend to side with sceptics and rationalists, materialists and those who obsess about evidence-based medicine. I distrust homeopathy, people who worry about electrosmog and people who claim to have seen UFOs.
But M.E.? I admit I am baffled. When I first picked up on the whole debate, if that is not too polite a word, between the likes of Simon Wessely who believe that M.E is basically a psychogenic condition that can be treated by CBT and other techniques, and those who insist that M.E. is the result of an infection or immune system malfunction, I was mystified.
My initial reaction has been to side totally with the psychiatrists. I have seen some of the emails and so forth that have been sent, told about the FOI requests, reports to the GMC and so on and find it weird, at best, that this is happening.
But clearly people feel very strongly about this and I want to know why. Perhaps you can tell me?
I have written about many controversies - animal experimentation, global warming, MMR and so on but even a brief delve into the Internet shows me that there is a volcano of an issue here.
So, my first question. You are prominent among those who would like to see ME treated as a 'proper' illness (not psychogenic). What informs this view?
Do you condemn - unreservedly - those small number of people who appear to have issued threats, however vague, against people like Simon Wessely? You are quoted as saying that you believe these threats are a storm in a teacup, that Wessely et al are over-reacting. Is this the case?
I have spoken to Simon Wessely and he seems a decent, humane man. Do you accept that he is decent and humane, even if you disagree with his methods and point of view regarding this disease?
How did you react to the recent news that XMRV is probably not the causal agent of ME?
Did you previously believe it was? If not XMRV, then what do you believe causes ME?
Are you still in contact with Jane Bryant?
Have you ever met your opponents and debated with them? Do you believe it is possible to have a mature and reasoned debate over a matter of what amounts to a major scientific and medical disagreement?
I look forward to hearing from you, and your view on any of these issues.
Best regards
Mike
----- Original Message -----
From: ANGELA KENNEDY
To: Hanlon, Michael
Sent: Tuesday, December 04, 2012 2:03 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Mike,
I will hopefully be able to answer your questions within the next few hours. In the meantime I enclose three links which you should look at to get a reasonably clear idea of where I am actually 'coming from':
1. The link to my book on Amazon gives the first few pages of the Introduction on its 'look inside' facility. The first three pages will I believe be most useful to you, though I would also recommend you read the back cover, which also gives my academic research interests as a social sciences lecturer and researcher.
http://www.amazon.co.uk/Authors-Our-Misf...800&sr=8-1
2. A publicly available statement I have made about dematory claims made about me with regard to Professor Wessely.
http://mywikibiz.com/images/2/2b/Stateme...ssment.pdf
3. My complaint to the Lancet about the PACE trial:
http://mywikibiz.com/images/7/74/Complai...rticle.pdf
Best wishes
Angela
----- Original Message -----
From: ANGELA KENNEDY
To: Hanlon, Michael
Sent: Wednesday, December 05, 2012 1:28 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Mike,
For ease of reference I have preceded your questions with a Q, and my answers with an A (should make things clearer hopefully!)
Firstly I should tell you that I too count myself as (colloquially) 'pro-science' (though with some caveats), with a rationalist, materialist concern that science and social science, proceeds with empirical adequacy, and rational, coherent argument within a critically analytical framework: and that all underlies my critiques of psychogenic explanations for physical illnesses like ME, particularly the analysis I undertake in my book.
I am concerned that you seem to believe FOI requests and reports to the GMC constitute harassment. These are publicly available legitimate courses of action, through official channels, for people who have concerns or complaints about certain situations. I'm confident you would not think anyone who has ever made a complaint to the GMC, written to an employer, or asked for information under FOI is guilty of harassment per se. Journalists use FOI requests, for example. These were mentioned three times on Panorama the other night; and have been used by BBC reporters since 2005:
http://news.bbc.co.uk/1/hi/in_depth/uk/2...efault.stm
There are specific, legitimate and rational reasons people are taking these - again, legitimate - courses of action. As you will have seen from the links I gave you, there are specific reasons I have had occasion to complain about the PACE trial, and write to an employer, neither of which can be remotely considered as 'harassment'. I would say, if I may advise you, that you should dig deeper on those reasons.
Q: So, my first question. You are prominent among those who would like to see ME treated as a 'proper' illness (not psychogenic). What informs this view?
A: Your above comment does not accurately reflect my position. This is why I would ask you to read the first three pages and back cover of my book via the Amazon link I gave you to get an idea of where I am coming from. There are a very important distinctions between your above assessment of my position and what my position actually is, not least being that I do not consider psychiatric illnesses as 'improper' or 'not real', which is what your description implies (whether or not you meant it like that). But to give a summary of where I am coming from: I am concerned about psychogenic misdiagnosis, which leads to psychogenic dismissal of serious physical illness, which leads to patients' lives, health and quality of life being endangered. Psychogenic misdiagnoses have led to tragic, premature deaths, and to prejudicial treatment by health, educational, social and benefits agencies, even communities and families.
It is also untrue that people objecting to psychogenic explanations for ME are doing so out of contempt for mental illness and its sufferers - though that is a myth that gets repeated over and over again.
One thing I think also needs to be remembered is that, no matter what I, or Professor Wessely, the ME community or other doctors think, the WHO classify ME as a neurological illness, and the British government abides by this classification.
1. Q: Do you condemn - unreservedly - those small number of people who appear to have issued threats, however vague, against people like Simon Wessely?
A: I must ask you quote this exactly: "As an academic myself I unreservedly condemn any actual harassment and abuse of researchers. However, raising reasonable objections to something through legitimate means (such as FOI requests or official complaints) is not harassment or abuse. There are specific reasons I have complained about the PACE trial, and written to an employer, neither of which can be remotely considered as 'harassment'."
The other issue you need to consider though - and this is vital - is that hate speech is being waged against a disabled patient group, especially though not exclusively with regard to the claims of 'harassment', that are specifically unsafe i.e. falsely accusing people - who are following legitimate procedures - of harassment, intimidation, and abuse, which is what is being done, when you look carefully at the various claims being made about the community.
ME sufferers are being characterised as 'extremists', 'fanatics', as well as 'malingerers' and 'hypochondriacs'. Their concerns are misrepresented as contempt for mental illness sufferers. They are mocked and told that they cannot be that ill in the first place if they have the energy to comment, an common insult. The historical insult 'Yuppie flu' is repeated as nauseum. Doctors have been involved in inciting this contempt for sufferers, and I discuss this phenomenon in my book.
2. Q: You are quoted as saying that you believe these threats are a storm in a teacup, that Wessely et al are over-reacting. Is this the case?
A: I would be grateful if you could give me the exact place such a 'quote' was made (and by whom), because I have never said this. This is not how I actually speak or write, and it is certainly NOT how I see the situation.
3. Q: I have spoken to Simon Wessely and he seems a decent, humane man. Do you accept that he is decent and humane, even if you disagree with his methods and point of view regarding this disease?
A: It is impossible for me to make an assessment of the character of someone whom I have never met. It's like asking me to say if Robert Pattinson is a 'decent, humane' man. In any case, as both a supporter of the ME community and, importantly, an academic myself, my concern is really not with anyone's 'character', but with highlighting specific problems with claims, and actions, within the fields of science and medicine that might be harming patients.
4. Q: How did you react to the recent news that XMRV is probably not the causal agent of ME? Did you previously believe it was? If not XMRV, then what do you believe causes ME?
A: The vast majority of patients and their supporters are not, and were never, pushing for a 'favorite pathogen'. From my experience, most of us were - still are - merely hoping for science to progress, correctly and ethically, in testing for a possible causative agent. There are, however, reasons to believe there were, and remain, problems with how 'the science' was conducted, following publication of the Lombardi paper.
5. Q: Have you ever met your opponents and debated with them? Do you believe it is possible to have a mature and reasoned debate over a matter of what amounts to a major scientific and medical disagreement?
A: I did try and explain concerns about the PACE trial to Peter White, one of its authors, in a public meeting actually about the trial, but sadly he was not interested in discussing them. It SHOULD be possible to have mature and reasonable debates over this matter, but that is impossible when one 'side', from a position of power (that is proponents of psychogenic explanations for ME), accuses other participants (like patients and their supporters) of harassment, intimidation, and abuse - just because they have raised legitimate objections or concerns through legitimate channels - and misrepresents those concerns, which is sadly what has been happening.
Best wishes
Angela
----- Original Message -----
From: Hanlon, Michael
To: ANGELA KENNEDY
Sent: Thursday, December 06, 2012 1:18 PM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Angela
Thank you for taking the time to answer my questions.
Would you be prepared to meet with me sometime before Christmas? Happy to buy you lunch on the Sunday Times!
Best regards
Mike
----- Original Message -----
From: ANGELA KENNEDY
To: Hanlon, Michael
Sent: Friday, December 07, 2012 7:39 AM
Subject: Re: ME, XMRV, the PACE trials and Simon Wessely
Dear Mike,
Thank you, that's very kind of you :) Unfortunately I'm just not in a position to do that at the moment - certainly not before Christmas, and to be honest after Christmas feels unlikely, for a variety of reasons around caring for my daughter - and to be honest I've not been too well myself anyway (ongoing anaemia of unknown cause).
But anything else you need to ask me I am happy to answer by email.
There is one thing I forgot to mention in my previous email, regarding insults against ME patients that are repeated over and over again by journalists and academics (and Roger Highfield has just used this insult himself in a tweet!), and that is the irrelevant and laboured association, onto the obvious but entirely coincidental similarity, in the English language, between the acronym for Myalgic Encephalomyelitis, and the first person objective, in order to characterise ME patients’ characters in dysphoric terms. This manifests in phrases like "the Me Me Me lobby" (Highfield's tweet), or in Elaine Showalter's case, this comment in her book Hystories, that the acronym “reflects the patient’s self absorption” . This is being done without irony. It's become, I'd say, an institutionalised, highly prejudicial insult against a disabled group. I discuss the characterisation of ME sufferers (and those of other illnesses deemed psychogenic) in dysphoric terms in detail in my book.
Best wishes
Angela
END OF CORRESPONDENCE
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