NBICS and the UN Convention on the Rights of Persons with Disabilities
by Gregor Wolbring

September 15, 2006

I was for many years involved in the process of developing the UN Convention on the Rights of Persons with Disabilities. Agreement on the text of the Convention was reached in August 2006. So how does this Convention relate to NBICS? It is obvious that the UN text should influence the NBICS discourse, and the NBICS discourse will influence the interpretation and implementation of the Convention.
 
Impact of the Convention on the NBICS Discourse

A variety of statements in the Convention oblige the NBICS discourse to deal with access to products, involvement of disabled people in the discourse, and other issues. These include: Preamble -  (e), (m) and (r); Article 4 - General Obligation - (c), (f) and (g); Article 9 - Accessibility - Intro and 1 (g) and (h); Article 15 - Freedom from Torture or Cruel, Inhuman or Degrading Treatment or Punishment; Article 20 - Personal Mobility - (b) and (d); Article 21 - Freedom of Expression and Access to Information - Intro and (a); Article – Health - (e); Article 28 - Adequate Standard of Living and Social Protection - (a).

The description of disablement in the Convention and the understanding of persons with a disabilities will impact the NBICS discourse -- especially around ableism, the transhumanization of ableism (see my Ableism and NBICS column) and the line between therapy and enhancement (see my Therapy Versus Enhancement column). In short, the Convention can be described as adhering to a social construction of disability but a medical -- a deficiency -- construction of the perception of a person with a disability.

Preamble (c)bis of the Convention (August 27, 2006 version) sees disability as a consequence of the barriers faced by a person with an impairment, not as barriers faced by a person with a variation in functioning.

Since impairment is not defined in the Convention, the World Health Organization International Classification of Functioning (ICF) definition will likely be used to interpret the term impairment in the Convention. Many countries already use the ICF. It defines impairment as "problems in body function or structure such as a significant deviation or loss."

The Preamble to the Convention and the ICF definition together create a recipe for a medical, deficiency model understanding of the bodily reality of a disabled person -- which opens the door to a transhumanist model (Ableism and NBICS, Therapy Versus Enhancement). The Convention negates the right of self-determination of how one perceives oneself. The Convention negates the right of persons with disabilities to perceive their set of abilities and functioning as a variation, and forces them to see themselves as deficient. This adds strength to the medical model of functioning and health, and ultimately to the transhumanist model.

Disabled people who see their characteristic as a variation of being that is unprotected by the Convention may embrace the medical or transhumanist model in order to be protected. In the same way that disabled people now accept the deficiency label placed on them by others, the techno poor disabled (Ableism and NBICS) may also do so in the future.

Impact of NBICS on Interpretation of the Convention

The Issue of Personhood

Using the term ‘person’ in the Convention has a variety of consequences.

First, it makes this a Convention for disabled people who acquired or developed their impairment-labelled characteristic of functioning after birth. It does not protect against eugenic measures of pre-birth deselection. Article 10 - Right to Life will not apply to pre-birth stages and can not be used to fight other pre-birth interventions. (An interesting side note: If Article 10 can’t be used in pre-birth stages, the language of 25 (b) can not be used to justify prebirth screening and intervention.)

Second, the Convention is susceptible to changes in the meaning of the term person, which has changed throughout history. The debate around the concept of personhood is now intensifying again for two reasons.

Advances in science and technology increasingly allow for the modification and enhancement of Homo sapiens and other species beyond species typical boundaries. The design of new life forms through synthetic biology, might lead people to believe that it is essential to change the concept of ‘person’ and ‘human rights’ towards the concept of ‘sentient being rights’ and to link the term ‘person’ not just to ‘humans’ but to cognitive abilities of any species, in order to give the required legal protection.

Different ethics and morality can be applied to biological entities not seen as persons. This is important for the applicability, legality, acceptance and ethical approval of the selection of embryos with desired characteristics, elimination of fetuses with unwanted characteristics, manipulation of embryos and fetuses, infanticide, after-birth biological enhancements and therapies on newborns, mercy killing, and interventions at any other stage of human development where a biological entity is seen as a non-person.

Disabled people will have to follow the debates around personhood and what it is to be a human being very closely to see how the applicability of the Convention might change in the future.

The Concept of Health

While the Convention has an article on health, nowhere does it define the term health. “States Parties,” it says, “recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.” However, what does this really mean?

Does the convention mean health as in the World Health Organization definition of health, which includes social well-being, or does it interpret health to mean the absence of disease, or medical health?  Health is not a static term (Therapy Versus Enhancement). Advances in science and technology will influence our concept of health, and the concept of health will in turn influence the direction and governance of science and technology research and development.

That makes every ‘health’ related aspect of the Convention susceptible to future changes in the concept of health.

The Choice is Yours

An agreement on the text of the UN Convention on the Rights of Persons with Disabilities was reached on August 27, 2006.  The Convention will be formally sent to the General Assembly for adoption at its next session, which begins in September 2006.  It will then be open for signing and ratification by all countries. After that the real work starts -- namely implementation and monitoring to make the convention work in a decent way, and to prevent negative impacts by advances in NBICS.

Gregor Wolbring is a biochemist, bioethicist, science and technology ethicist, disability/vari-ability studies scholar, and health policy and science and technology studies researcher at the University of Calgary. He is a member of the Center for Nanotechnology and Society at Arizona State University; Member CAC/ISO - Canadian Advisory Committees for the International Organization for Standardization section TC229 Nanotechnologies; Member of the editorial team for the Nanotechnology for Development portal of the Development Gateway Foundation; Chair of the Bioethics Taskforce of Disabled People's International; and Member of the Executive of the Canadian Commission for UNESCO. He publishes the Bioethics, Culture and Disability website, moderates a weblog for the International Network for Social Research on Diasbility, and authors a weblog on NBICS and its social implications.

©Gregor Wolbring, All Rights Reserved, 2006. Reprinted with permission.