Transableism, disability and paternalism in public health ethics: taxonomies, identity disorders and persistent unexplained physical symptoms
[edit] Original Article
Authors: Mackenzie, Robin and Cox, Stephen
International Journal of Law in Context (2006), 2: 363-375 Cambridge University Press doi:10.1017/S1744552306004022 Published online by Cambridge University Press 02Apr2007
[edit] Abstract/Overview
Transableism is a term which refers to moving between states of being able and disabled by choice rather than by happenstance. Insofar as this may imply a choice to become dependent, claims upon the healthcare system are likely to result. In this piece we aim to explore some ethical and legal implications of such claims. In order to do so, we draw upon current debates over the place of autonomy, beneficence and paternalism in public health ethics, the taxonomy of disability and the status of persistent unexplained physical symptoms (PUPS).
[edit] Comments/Analysis
" Transableism is a term which refers to moving between states of being able and disabled by choice rather than happenstance."
As stated elsewhere, we disagree with the authors' interpretation of the word (particularly expanding the word to PUPS). As Sean O'Connor conceived the word transabled, it aimed solely to describe individuals with BIID. In that respect, it is not a *choice* to need to have a disability.
One might wonder which meaning of the word should take precedence? The one put forth by researcher in a medical journal, or the meaning more widely accepted by a community of people suffering from BIID? We are afraid that unfortunately, the published authors will take precedence.
"Insofar as this may imply a choice to become dependent, claims upon the healthcare system are likely to result."
Again, it's not a question of choice. But accepting that part, and looking at the costs to the system, the question begs to be asked: which cost is higher, that of an unproductive, depressed, socially withdrawn individual with an able body, or that of a happy, productive (read employed) individual with an impairment? The authors discuss that later in the paper, quite well :)
I think one of the issues is the abstract itself, which gives negative mpressions. Someone reading the abstract only, will retain a sense that someone who is transabled has a choice in how they feel, and that to accede to their request will be a drain to the system. Even if someone reads the article later on, the "first impression" has been done, and, in my opinion, that first impression is damaging to a good understanding of BIID.
"suggest that patients should bear responsibilities as well as rights."
No contest there. In particular, as it relates to BIID, transabled individuals have a responsibility to be fully understanding of the impact/consequences of their needed impairment. It is unfortunate that so many people say/think they need an impairment, yet know little or nothing of the actual facts of that impairment (for instance the person who says they need to be a paraplegic, yet didn't know their dick wouldn't work quite the same after an SCI). But I think these are the minority rather than the norm. Unfortunately again, there isn't enough research done to be able to states this with authority.
"Those who choose to engage in behaviours which will undoubtedly result in ill health, consuming healthcare resources thereby, may be seen as harming others as well as themselves."
This is an issue often raised when people with disabilities discuss BIID. They fear for their already shrinking pool of "benefits" funds. There already isn't enough money to go around, why should anyone be provided with benefits (whether be on the dole, or receiving hardware such as prosthetics or wheelchairs). This goes to the concept of dependency.
Transabled individuals (my understanding of transabled...) as a whole don't wish to be dependent. There is no desire to abuse an already overtaxed system.
That said, many of us are already a cost on the system. Not just an actual financial cost such as expenses for therapists, and medication (neither of which really work), but societal costs such as absenteeism from work, etc.
"the central ethical issue is whether the significance of the costs justifies the intervention"
It is most definitely a valid question, but, at the risk of repeating myself, one must point out that transabled individuals already incurr costs to the system, and that anecdotal evidence shows that post-impairment, transabled individuals don't need "the system" anymore.
"The term "abnormal" has acquired pejorative force. In addition, within the health lexicon, it suggests a condition in need of a remedy, treatment or cure so that it might fit within the norm."
Which norm? The physical norm? Or the mental health norm? I reject the usefulness of such a concept as "normalcy", whilst I recognise that my rejection does nothing much to the reality of the fact that the "system" relies on it.
"The inclusive state has an obligation to citizens suffering from impairments to provide means by which their ability to participate in civic life might be fostered. In other words, dependence which results from impairment is to be transformed into independence or autonomy."
This would support the provision of surgery for individual suffering from BIID.
"Those suffering from ill health have a different claim on the state, that of healthcare ideally leading to a cure, or where this is not possible, to support for their dependent state."
Again, this supports the provision of surgery for an individual suffering from BIID. One could say that a "cure" for the "BIID problem" is surgery. Though I have argued in the past that once you have BIID, you always have BIID, so it's not so much a question of cure as of successful treatment protocol.
"However, claims to have invented it have also been put forward by paradevo, the operator of a website, http://www.transabled.org, which caters for those wishing to share their thoughts and experiences about the process of moving amongst different degrees and types of able bodiedeness and those involved in this."
I would like to request a correction to be made. I don't know if it's even possible, but you're attributing MY website to paradevo. Paradevo has nothing to do with transabled.org. I have no idea where you got the impression that Lee was claiming both to have invented the word 'transabled' and to be running transabled.org, but I take profound offense to that error.
"However, this condition does not appear in the current edition of the DSM, and may not be seen as meeting the criteria for that due out in 2010"
This is a bit of a chicken vs egg merry-go-round. It can't be included in the DSM because there's not enough evidence to include it, but there's no research being done into it because it's not included in the DSM. In the meantime, transabled individuals suffer.
"In addition, the parameters of the doctor's duty of care come into question: these are defined by the presence of a responsible body of opinion, or professional guidelines, on disorders recognised as medical conditions with a range of acceptable treatments."
Again, chicken vs egg. Doctors can't treat until there's guidelines, but no one is looking at the issue because there's no recognition of the condition.
"we do not propose to do anything other than provide this sketchy account of issues surrounding treatment for BIID."
Exactly. No one proposes to do anything other than raising ethical and legal issues. The few that do actually *act* get lynched, such as Dr. Smith at Fallkirk.
One can't say "There aren't enough studies to justify using surgery as a treatment for BIID", yet at the same time, refuse to study the condition on the grounds that it would be unethical to proceed with such studies. This circular argument is beyond frustrating.
"Surgical intervention may be justified on the basis that the degree of suffering associated with such fixed beliefs over identity cannot be relieved otherwise, since medication and cognitive behavioural therapy have proven largely unsuccessful in doing so."
Yes! Couldn't agree more.
"those with body dysmorpha consider parts of their body to be intolerably diseased or unattractive"
This could be confusing to a reader unaware to the somewhat important differences between Body Dysmorphia Disorder and BIID. Most people with BIID do not consider their body/parts of as diseased or unattractive.
"This suggests that those who are diagnosed as suffering from identity disorders on the basis of subjective experience of body ownership which do not conform with intersubjective judgements might be categorised by specific characteristics with their parietal cortices. In our view, this suggests that BIID and GID may offer potential for future research here."
What about here and now? How long before such a "cure" might be found? Should we not offer the only fix that has been shown to work now, while we keep on looking for a less invasive solution? The history of medecine is full of procedures that were fully acceptable 100 years ago, yet are looked at today as ludicrous. Some were indeed ludicrous, yet, others worked, just not as well as alternative methods. An example from my very own experience: As a teenager (mid-80's), I broke a collar-bone while on vacation in Sardinia. I was treated at a military hospital, and put in a thick cast covering my entire torso, from bellow my belly button to above my injured shoulder, with my arm on the injured side completely included in the cast, as if in a sling, except for my hand sticking out. My uninjured shoulder and arm were left "free to roam". Returning to continental Europe two days post accident, I was seen by an orthopaedic specialist there who promptly removed the cast and put me in a figure 8 bandage, exclaiming how the cast I was wearing hadn't been seen as the best treatment option for decades. Yet, two days later, when arriving in Canada and being seen by our family doctor, the figure 8 bandage was cut off, and I was placed into a Y shaped strap that held my shoulders back, while my GP explained that the figure 8 bandage hadn't been used in Canada for several years, deemed to be "overkill". So in the space of a week, I witnessed the evolution of treatment alternatives for a broken collarbone that spanned decades. Does this mean that the rather invasive cast didn't work? No, it did work.
While I'll grant that there is a difference between casting half of one's body and chopping off a limb or severing a nerve, my story illustrates my point.
"The fact that cognitive behavioural therapy and anti-psychotic medication have proven ineffectual in relation to similar subjective perceptions of identity in BIID and GID would tend to support our hypothesis that unidentified neurocognitive characteristics involving parietal cortex integration fo subjective perceptions of body ownership and morphology are involved in the aetiology of these conditions."
Right, so this is basically saying that even though there's evidence pointing us in one direction, we keep going in the opposite direction because we're convinced that we haven't dug deep enough?
"Ethical judgement over how far a decision to move from an able bodied to a disabled state can ever be adjuged autonomous rest upon one's conception of how disability relates to autonomy."
If a medical practitioner refuses to provide surgery on the grounds that it is unethical do to so, since the perceived decrease in autonomy would be too great, should we not also take into account the proven negative medical bias against disabilities? Here's some interesting stats: Tough Questions and Medical Bias - Stats
Given this bias against disability, I suggest that leaving the decision of the ethics of surgery as an option to the medical community is the safest way to ensure that surgery is never offered as a viable treatment alternative to people with BIID.
"In what Salmon and Peters have described as a social epidemic, PUPS may be triggered by a combination of media coverage of symptomology, medical consumerism and the rise of special interest groups, which together act to alter the perception of illness among a group of people who may be made vulnerable by interpersonal factors. Hence identity disorders may proliferate as the medical profession colludes, albeit reulctantly, to shape these perceptions into legitimate pseudo-syndromes by medicalising conditions that consumerism has defined as illness."
There are a couple things here. First, the concept that it's only a disorder because "consumers" have decreed it is. As BIID doesn't exist officialy in the DSM or any other medical "manual", the condition only exists through the thousands of individuals who identify as having BIID.
Second, is what I call the "crawling out of the woodwork" theory. The idea that people would identify as having BIID just because it would now be an "official" condition is a bit ridiculous. I agree that there is likely to be a rise in documented BIID cases after such a condition would be included in the DSM, but only because people would now be able to associate their feelings to the condition. Until I knew there were others that felt like I did, I did not even know to ask the questions. I could not imagine that my "booboo" was an actual condition. Yet after relating to other transabled (again, my definition) individuals, I realised that what I had was indeed something concrete. I am convinced that there are big numbers of people living in a personal hell because they aren't aware that what they have is an actual condition. And when the condition becomes "official", these people have more of a chance to realise that what they have is real, and seek treatment.
"In addition, normative approval or disapproval of chocie in relation to movements between able bodied and disabled status, as well as between autonomous and dependent states, comes into question"
You're trying the able/disabled status with autonomous/dependent status. My background in disability rights makes me adopt more of the social model and question that link. I don't believe for one moment that being able bodied automatically means being autonomous, no more than having an impairment means dependency.
It is also interesting to note that the concept of "able bodied" vs "disabled" is frowned upon by many people in the disability community.
Such a concept excludes an entire section/grouping of disabilities, such as cognitive ones, mental health ones, etc. It focuses the
concept of disability on the functioning "normal" body. If one looks at disability in broader terms, it becomes apparent that BIID is indeed a disability already.
"According to the limited anecdotal evidence base available, once the amputation has taken place, prosthese are adopted successfully, psychic suffering ceases and entrance into fully autonomous lives takes place as subjective and intersubjective notions of identity are congruent. Hence, paternalistic intervention to prevent amputation of a healthy limb would appear to be unjustified."
I think that is an important point to emphasize.
Further, it makes me question the existing literature. Having read most of what is available in published material today about, or relating to, BIID, I wonder why the actual case studies/case reports aren't actually representative of the "typical" BIID sufferer? Ramachandran in his book "A brief tour of human consciou5ness" (the 5 isn't a typo), states that "most of the syndromes in neurology that have stood the test of time - for example, the major aphasias, amnesia, cortical color blindness, neglect, blindsight[...] - were initially discovered by a careful study of single cases, and I don't know of even one that was discovered by averagting results from a large sample" (preface, page xi.)
So why aren't there studies focusing on those people who have successfully become amputees? Why do these stories remain "anecdotal evidence". I personally know of at least 6 documented successful realised wannabes. Two from the Fallkirk surgeries, and the rest from self-injury methods such as use of dry ice, shotguns, etc. Why isn't anyone speaking to them?
"The self-regarding choices many of us make which cause us to make long-term demands upon healthcare resources, such as those where over-indulgence is implicated, are far more constly in economoic terms, but remain immune to paternalistic prohibition."
Thank you, good point. :)
"In addition, in simply financial terms, the resources needed to treat the emotional and physical damage caused by sufferers from BIID who attempt unsuccessfully to remove a limb themselves is substantial, as well as highly counterproductive."
Absolutely!
