International Centre for Bioethics, Culture and Disability

KEY TERMINOLOGIES IN THE FIELD OF DISABILITY: Change through NBICS
Gregor Wolbring

A slightly changed version of my talk on the 27th July, 2006 at a World Health Organisation meeting
 
An interrelationship exist between direction in and governance of science and technology and the concepts of ‘health’, ‘disease’, ‘wellbeing’, ’disability’, and ‘impairment’. On the one hand technologies such as (a) nanoscience and nanotechnology; (b) biotechnology and biomedicine, including genetic engineering; (c) information technology, including advanced computing and communications; (d) cognitive science (neuro engineering) and e) synthetic biology (‘NBICS’ -nano-bio-info-cogno-synbio) impact on these very concepts. On the other hand these concepts do impact on the direction and governance of research and development of NBICS.

 

Relationship between health and wellbeing: (1)
 
Two contradictory models exist concerning the relationship between "health" and "wellbeing".
The World Health Organization (WHO) model considers different domains of well-being as determinants of the umbrella term “health” which is reflected in the WHO definition of health , wherein health is defined as "a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. This model through different wellbeing determinants combines the areas of “medical health” and “social health” under the term “health”.

However  increasingly the discourse seems to move away from the WHO definition of health  treating especially social wellbeing less and less as a determinant of health  but interpreting the term “health” to mean “medical health”/ “medical illness”.  “Health” is used today to cover the domain of "medical" determinants of "wellbeing." “Social health” is not covered anymore under the term “health.”

Determinants and models of health (1)

Two models of health are dominant. 

Medical model of health and disease

Within the medical model of health and disease, health is limited to cover “medical health” and is characterized as the normative functioning of biological systems whereas disease/ illness is defined as the sub-normative functioning of biological systems.

Locating the cause of and solution for “ill medical health” comes in two flavors.

Medical determinants of medical health place the cause of sub-normative functioning within the individual’s biological system leading to medical interventions towards the species typical norm on the level of the individuals (medical, individualistic cures). (1)  

Social determinants of medical health identify external factors as the cause for the “ill medical health” the sub-normative functioning of the individual and tries to fix the external factors. This includes, for example, contaminated water that leads to bacterial or parasitic infections, or job insecurity that contributes to stress and heart disease. (1)

This version of the medical model is often misleadingly referred to as the "social model of health" or as the "social determinants of health". It is misleading in my eyes because the model addresses only “ill medical health”/"medical illness". The "social determinants" relating to the social wellbeing the “social health” of a person are rarely addressed. (1) Furthermore even if the social well being is addressed it is addressed within the framework of the social well being of a medically ill person.

Extension One needed: Real Social model of health (1)

A real social model of health is needed which would examine how social determinants influence "physical, mental, and social wellbeing" and would not be limited to look at how social determinants influence and worsen “medical health”. It would also look at the social well being of a person in general not just a ‘medically ill person’. One does not have to be identified as a “patient” or “patient to be”, as a person in “ill medical health” or in danger of gaining ill/bad medical health in order to be covered and investigated under the social model of health.

 

Models of “disability/impairment” (1) 

 

The Basics: Medical Model of “Disability/Impairment”

Within the medical model of ‘disability/impairment’,  ‘disability/impairment’ is viewed as a defect, a problem inherent to the person, directly caused by disease, trauma or other ‘medical health conditions’ and a deviation from certain norms. The person obtains the label ‘patient’ with subnormative functioning.

 

The solution for the “disability/impairment” of the person or person-to-be is mostly focusing on cure, prevention of birth, deselection on the embryo level, or normative adaptation. Medical individualistic care and prevention (in the case of the fetus/embryo) and individualistic normative rehabilitation are viewed as the primary endpoint and at the political level the principal response is to make curative and preventive medicine more efficient.

Extension One needed: Medical model/social determinants  of “disability/impairment”

Rarely does one employ the concept of “social determinants of health” within the medical model of ‘disability/impairment’ to investigate how external factors further already existing “ill medical health” and negatively affect the social wellbeing of the ‘patient’ the person with a disability/impairment’. 

Extension Two needed: Medical model/social determinants/social well being  of “disability/impairment”
Even rarer does one seek modifications of social determinants to make them instrumental in diminishing the ill/bad “social health” and in increasing the social wellbeing of the ‘patient,’ despite this necessity for the ‘disabled/impaired’ person/patient. (1)

 

Extension Three Needed: Social Model of Disability (1)

The social model moves beyond the medical model, social determinants/social wellbeing combination by linking the usage of social determinants to social wellbeing and by uncoupling social determinants from the prerequisite of one being or becoming medically ill. The biological reality of disabled people is seen as a variation of being – not in need of fixing – but in need of having the physical environment, the interaction with the physical environment, and the societal climate changed to accommodate their biological reality. It does see disability mainly as a socially created problem, and as a matter of the full integration of individuals with different biological realities and abilities into society. Disability is not seen as an attribute or defect of an individual, but as caused by the reaction of society towards the biological reality of the individual.

 

Extensions Happening to the models driven by NBICS(1)

Moving from Species-typical functioning to Beyond species-typical functioning

Advances in and converging of NBIC allow for a new model of health which takes into account the increased ability of science and technology products to modify the appearance of the human body and it’s functioning  (1)  beyond existing norms and species-typical boundaries.

The new kid on the block: the transhumanist/enhancement model of health (1)

What is a non-disabled person?

So far a non-disabled person was someone whose body functioning was seen as performing within species typical acceptable parameters (medically healthy). The term non-disabled was used as a counterpart to the medical/patient type understanding of disabled people.
However this is changing.

Within the transhumanist/enhancement model of health, the concept of health no longer has the endpoint that someone is “healthy” if the biological systems function within species-typical, normative frameworks. Within the transhumanist/enhancement model all Homo sapiens bodies – no matter how conventionally “medically healthy” – are defined as limited and defective in need of constant improvement made possible by new technologies appearing on the horizon (a little bit like the constant software upgrades we do on our computers). Health in this model is the concept of having obtained maximum (at any given time) enhancement (improvement) of one’s abilities, functioning and body structure. Disease, in this case, is identified in accordance with a negative self-perception of ones non-enhanced body (i.e., “I feel un-well because I feel confined to the normal human body and I want to add capabilities to the body as soon as it is possible”).  It also links social wellbeing and “social health” to the availability of enhancement procedures. 

What is a disabled person?

 

The pure transhumanist/enhancement model of “disability/impairment”

The transhumanist model of health sees every Homo sapiens body as defective in need of improvement (above species-typical boundaries). Every Homo sapiens is by definition, “disabled” in the impairment /medical/patient sense.
Within the transhumanist model of “disability/impairment”, disabled people are those who are not able to improve themselves beyond Homo sapiens normative functioning. (techno poor disabled)
Under this model, technologies which add new abilities to the human body are seen as the remedy for ill medical/transhumanist health and wellbeing. Enhancement medicine is the new field providing the remedy through surgery, pharmaceuticals, implants and other means. 
 The transhumanist model of "disability" views science and technology – including NBICS – as having the potential to free everyone – the now "all disabled people" from the "confinement of their genes" (genomic freedom) and the "confinement of their biological bodies" (morphological freedom).  It seems to fit well with the existing dynamic of the medicalization of the human body where more and more variations of human body structure and functioning are labelled as deviations as diseases and with the phenomenon that more and more ‘healthy’ people feel ‘unhealthy, feel bad about their bodily structure and functioning’(1).

The transhumanist/enhancement model of health, ability and disease elevates the medicalization dynamic to its ultimate endpoint, namely, to see the enhancement beyond species-typical body structures and functioning as a therapeutic intervention (transhumanization of medicalization)(1).

 

What is Health? Who is disabled? The consequences of the changing answers

A variety of consequences are attached to the transhumanist model of health and disability

A transhumanized version of ableism:

Ableism is a network of beliefs, processes and practices that produce a particular kind of self, body and abilities which are projected as the perfect and essential while at the same time labeling deviation (real or perceived) from this essential self, body and abilities as a diminished state. Ableism has been long-used to justify hierarchies and the exclusion of people not classified as ‘disabled people’.  

Advances in science and technology are increasingly enabling science and technology R&D products to modify the appearance and functioning of the human body beyond existing norms and species-typical boundaries. The direction and governance of science and technology and the concept of ability are inter-related. On the one hand, technologies such as NBICS have an impact on the very concept of ability and how we judge and deal with abilities. On the other hand how we judge and deal with abilities influences the direction and governance of NBICS processes, products and research and development.

A new transhumanized form of ableism is appearing that takes into account the increased ability of science and technology R&D products for body modification and is “a network of beliefs, processes and practices that perceives the improvement of human body and functioning beyond species-typical boundaries as the norm, as essential and judges a non-enhanced human body as a diminished state of existence”.

Transhumanism “is a way of thinking about the future that is based on the premise that the human species in its current form does not represent the end of our development but rather a comparatively early phase”.

The Techno Poor Disabled and the Ability divide

As more powerful, less invasive and more sophisticated enhancements become available the market share and acceptance of enhancement products will grow in high income countries. This could very likely develop into a situation where those who do not have or do not want certain enhancements (the techno poor disabled) will be discriminated against, given negative labels and suffer difficult consequences (transhumanism of ableism). For any given enhancement product there will not be a bell curve distribution, but rather a distribution jump from the “have nots” to the “haves” which will lead directly to an ability divide. What will change– depending on the social reality such as GDP of the economy, income levels and other parameters – is how many people end up as ‘haves’ or ‘non haves’ (techno poor disabled). The ability divide will be bigger between low and high income countries than it will be within any give low middle and rich countries and the ability divide will develop between the poor and rich within every country.  Not everyone can afford the enhancement of ones body. And no society can afford to enhance everyone’s body if everyone so wishes.  Billions of people that today are seen as healthy will become disabled not because their bodies have changed, but precisely because they have not changed their bodies in accordance with the transhumanist norm.

Disabled Transhumanists:

It might be assumed that ‘traditional disabled people’ would welcome such a shift, as it would move the focus away from particular forms of impairment, towards the ability to enhance oneself – a challenge which the ‘traditional disabled people’ would share with other ‘unenhanced people’. Indeed many transhumanists are very aware of the potential to use disabled people as a trailblazer for the acceptance of transhumanist ideas and products. James Hughes, the executive director of the World Transhumanist Association, writes, “Although few disabled people and transhumanists realize it yet, we are allies in fighting for technological empowerment.”(8)
However, as many ‘traditional disabled people’ are poor and live in low income countries they have far more to lose than gain from such a shift. Furthermore some ‘traditional disabled people’ might think that they are better off because they would share that lack of ability with others who can’t afford the enhancement, but I think we can expect that resources would rarely be ‘wasted’ on the ones who are below the traditional norm because with the same amount of money one could enhance more people who already fit the traditional norm than people who digressed from the traditional norm.

A transhumanized version of the DALY
The Disability Adjusted Life Years (DALY) is a measure developed in the 1990s and refined ever since was explicitly developed to "curtail allocative inefficiency" in the usage of health budget dollars according to Murray, who was hired by the World Bank and the World Health Organization to develop the DALYs (2). However what does that mean under a transhumanist version of health?
To quote Murray and Acharaya (2)

“… individuals prefer, after appropriate deliberation, to extend the life of healthy individuals rather than those in a health state worse than perfect health”

The spirit of this quote allows for the justification of a hierarchy of treatment of people with ill medical health whereby the ones which are deviating the least from a “species typical medical health state are treated first. 
It furthermore allows for the following interpretation

“ individuals prefer, after appropriate deliberation, to ENHANCE the life of healthy individuals rather than those in a health state worse than perfect health.”

which allows for the justification of a societal development where one favors ‘enhancement medicine over ‘curative medicine’ seeing pure curative medicine as futile and waste of health care dollars.(1) This shift might also be lucrative from another economic standpoint as enhancement medicine provides the remedy through surgery, pharmaceuticals, implants and other means and could become the number one cash cow for many hospitals and medical practitioners such as ‘body engineers’, ‘body designers’ and body techno-maintenance crews. (1)

Transhumanized version of burden of disease

The transhumanized model of health and the transhumanized version of the DALY prepares the groundwork for the acceptance of a   transhumanist/ enhancement burden of disease which links the burden of disease not to a deviation from Homo sapiens-typical functioning but to the lack of enhanced functionalities and life extension and productivity modification of sentient beings.

 

Scientific and techno solutions for social well being?

One can envision that access to technology external or internal related to the body might increasingly be seen as the solution to bad social well being. One might see a shift away from societal changes to promote social well being to science and techno solutions like pills to achieve the goal that the person feels well socially and otherwise.  

Which data?
Depending which concepts one follows totally different sets of data are needed.

What form of rehabilitation and ‘health services’ for disabled people?

 
The different models outlined above will have an impact on the understanding of rehabilitation and health services. Beside the possibility that health services might move towards providing enhancements instead of cures and will chose their ‘clients’ accordingly (this will play itself out like that first in high income countries) one can envision that access to technology external or internal related to the body might be increasingly be seen as the solution to bad social well being. One might see a shift away from societal changes to promote social well being to science and techno solutions like pills to achieve the goal that the person feels well socially and otherwise.  

Interpretation of international Documents:

It is evident that the different understanding of ‘health’, ‘disease’ and ‘disability/impairment’ has a great impact on the interpretation of international documents  i.e. “Bangkok Charter for Health Promotion in a globalized world” the Universal Declaration of Human Rights and the International Classification on Functioning Disability and Health (ICF) and the to come Universal Convention on the rights of people with Disabilities. To give some quotes.

International Classification on Functioning Disability and Health ICF definition of disability and impairment.

Disability is defined as "the outcome or result of a complex relationship between an individual’s health condition and personal factors, and of the external factors that represent the circumstances in which the individual lives." Impairments are defined as "problems in body function or structure such as a significant deviation or loss."

In the 2005 Bangkok Charter for Health Promotion in a globalized world” one finds the following wordings
” The United Nations recognize that the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without discrimination;”
“Regulate and legislate to ensure a high level of protection from harm and enable equal opportunity for health and well being for all people;” “Government and international bodies must act to close the gap in health between rich and poor”; “healthier world”; “Health promotion has an established repertoire of proven effective strategies which need to be fully utilised”; “advocate for health based on human rights and solidarity”; “commitments to health for all”; “Make the promotion of health central to the global development agenda”; “Health promotion must become an integral part of domestic and foreign policy and international relations, including in situations of war and conflict”; “Health determines socio-economic and political development”; and whole sections such as  “Make the promotion of health a key focus of communities and civil society”; and “Make the promotion of health a requirement for good corporate practices.” 

The Universal Declaration of Human Rights  Article 25-1 states: “Everyone has the right to a standard of living adequate for the health and well-being of himself.”

The UNESCO Declaration on Bioethics and Human Rights states

“Recognizing that health does not depend solely on scientific and technological research developments but also on psycho-social and cultural factors.
Considering the desirability of developing new approaches to social responsibility to ensure that progress in science and technology contributes to justice, equity and to the interest of humanity.
Considering the desirability of developing new approaches to social responsibility to ensure that progress in science and technology contributes to justice, equity and to the interest of humanity.
Stressing the need to reinforce international cooperation in the field of bioethics, taking into account in particular the special needs of developing countries, indigenous communities and vulnerable populations.
Article 10 – Equality, Justice and Equity - The fundamental equality of all human beings in dignity and rights is to be respected so that they are treated justly and equitably.
Article 11 – Non-Discrimination and Non-Stigmatization - No individual or group should be discriminated against or stigmatized on any grounds, in violation of human dignity, human rights and fundamental freedoms.
Article 14 – Social Responsibility and Health
a)       The promotion of health and social development for their people is a central purpose of governments, that all sectors of society share.
b(iv) Elimination of the marginalization and the exclusion of persons on the basis of any grounds.”

 

All the quotes from different documents obtain different meanings depending which models and determinants of health (medical, social, and transhumanist) one follows and whether one perceives health to mean ‘medical health’ and to be a determinant of wellbeing or wellbeing  including social well being to be a determinant of health leading to different  expected actions, and mandates. All of the quotes also lead to certain expectations as to the usage of Nanotechnology and NBIC and to certain expectations as the technology is used in relation to disabled people.

 

Conclusion:

It is important to scrutinize more closely the societal dynamics around the redefinition of health, disease, disability/impairment in general and the move towards a transhumanist/enhancement model in particular and its impact on individuals, social groups especially already marginalized groups and the global community to better understand what can be done to identify and prevent possible negative consequences of NBICS science and technology.  I only outlined a few consequences related to the interpretation of health and the impact of NBICS. It’s essential that we discuss in earnest the concept of ableism which seems to be ingrained deeply within the global society.  Without discussing ableism one can’t tackle its transhumanized version and the expanding ability divide.

 

 

References

     1. Wolbring, G. HTA Initiative #23 The triangle of enhancement medicine, disabled people, and the concept of health: a new challenge for HTA, health research, and health policy, 2005, ISBN 1-894927-36-2 (Print); ISBN 1-894927-37-0 (On-Line); ISSN: 1706-7855 , http://www.ahfmr.ab.ca/download.php/954da463c9a6c633bdafefd1aaf23844//, <http://www.ahfmr.ab.ca/publications/?search=&type=5&sort=date&dir=DESC&dept=1>  
     2. Murray, C. J. and Acharya, A. K.Understanding DALYs (disability-adjusted life years) (1997) J Health Econ. 16, 6 703-730, PM:10176780,

 

Wolbring, G. Science and Public Policy, forthcoming 2006.