Disabled people [1] science and technology and health research

by Gregor Wolbring [2]

for Forum 8 of the Global forum of health research and the ministerial summit on health research organized  by the World Health Organization and hosted by the Mexican Government. Mexico City, 16-20 November 2004

 

Introduction:

 

Throughout history, science and technology and health research have had profound impacts -- both positive and negative -- on human kind. The goals for which S&T and health research are advanced are not value-free -- they reflect the cultural, economical, ethical, spiritual and moral framework of society. 

 

To understand the impact of science and technology and health research on disabled people a few questions need exploring: Which and whose values and perceptions are reflected in the definitions of what it means to be "healthy", of the "problems of disabled people" and the attached "suffering"?  Which and whose values and perceptions are reflected in the choice of solutions for these identified "problems"?  How do the predominant societal values and perceptions that define health, the problems of disabled people, the attached suffering, and the proposed solutions affect the self-esteem and self-understanding of disabled people?  Does the self-perception of disabled people match the perception that the "non-afflicted" have of disabled people?  Do disabled people define their "problems" and the solutions to them in the same way as do the "non-afflicted"? 

 

Answering these questions requires an examination of the complex interdependent fabric of perceptions, values, and choices. It also calls for a review of the development and application of science and technology and health research from within different cultural, economic, ethical, spiritual and moral frameworks.

 

 

 

1. The Situation of disabled people

 

More than 80% (400 million) of disabled people live in developing countries, 150 million of them between the ages of 10-24. [3] Disabled people have limited access to education (can be as low as 3%), employment and basic health care (can be as low as 2%), and experience profound economic and social exclusion. Most disabled people live in poverty, prevented from fully participating in their families and communities and from benefiting from their socio-economic rights [4] .Eliminating world poverty and meeting the MDGs is unlikely to be achieved unless the rights and needs of disabled people are taken into account [5] .

 

2.         Current understanding of disability and health and disease

 

Current understanding about what constitutes a disability and what individuals with a disability have to contribute to society has reframed disability as an issue of social entitlement, economic opportunity and human rights, as evidenced by the flurry of progressive legislation and new programs around the world, including a UN international convention to promote and protect the rights of disabled persons. [6]  

 

This new understanding about disability calls for a new framework for thinking about health and how it is measured. It also calls for a rethinking of the nature of health research needed and of the implications of the development and applications of new technologies.  

 

Disability was viewed for the longest time as a defect, a problem inherent to the person, directly caused by disease, trauma, other health conditions, or a deviation from certain norms. Disability was viewed as a terrible burden, leading to a low quality of life for the person and their relatives, leading to pity and rejection.

 

Management of "the disability" of the disabled person or person-to-be and the usage of new technologies such as Nanotechnology, Biotechnology, Information technology and cognitive sciences (NBIC) are aimed at "cure" (for example gene therapy, stem cell regenerative medicine, nanomedicine), "prevention" (prenatal genetic and non genetic diagnostics and preimplantation genetic diagnostics with the attached selection method), or "adaptation" of the person by various normalizing assistive devices (e.g. cochlear implants, artificial legs, retina chips, brain machine interfaces)  to ensure functioning or existence as normative as possible.

 

Medical care, preventive medicine, and rehabilitation towards the norm are the primary issues. At the political and policy level, the principal response is to make medical care, preventive medicine, and rehabilitation towards the norm more efficient. On the global scale the disability-adjusted life year (DALY) emerged to measure the "burden of disease" as a tool to support the above agenda.

 

This medical view of disability and the purely medical framework of health research and usage of science and technology are biased in that disability is viewed solely as a medical problem and other parameters are not considered. It is much too limited to address the needs of disabled people and other marginalized groups, contributing to overall global health inequities, increasing the 10/90 gap and the likelihood that the MDGs will not be met.

 

It results in a too narrow a policy/research focus that fails to address health as a state of complete physical, mental and social well-being [7]   and ignores the co-requisites for health such as peace, shelter, education, social security, social relations, food, income, empowerment of women, a stable eco-system, sustainable resource use, social justice, respect for human rights and equity [8] and other key determinants of health. [9] It ignores the WHO aim “to ensure equal opportunities and promotion of human rights for people with disabilities, especially those who are poor”. [10]

 

Instruments developed to measure health based on this limited view of health and disability, such as the DALYs, are inconsistent with today's understanding about disability and the recognition that quality of life and health depend in large measure on the socio-cultural, legal and economic ramifications of living with a disability. The DALYs are biased in that they advance a definition of health such that a disabled person is precluded from ever being considered inherently healthy.

 

The DALYs suggest that the prevention of impairments is the only available strategy for reducing the negative consequences of disability. They treat paraplegia, for example, the same in developed and developing countries, independent of societal parameters. [11] In developed countries many people with paraplegia have wheelchairs, reducing loss of mobility. In developing countries many do not have wheelchairs, and their mobility is severely restricted. Furthermore, wheelchairs alone are of no use unless the environment is designed to cater to them -- the provision of a wheelchair would have different effects within different social/environmental contexts.

 

DALYs are inadequate for measuring the global burden of disease because they do not evaluate and measure the roles played by environmental, societal and other factors in determining the severity and cause of disabilities and diseases [12] . They are also inadequate for measuring the effectiveness of health interventions because they have not been designed to measure non medical health interventions such as accessible environments.

 

3. Emergence of a transhumanist model of health, disease and disability

 

Advances in science and technology -- in particular the converging of nanotechnology, biotechnology, information technology and cognitive sciences (NBIC) -- give life to a third model of health. This transhumanist model of health, disease and suffering characterizes health as the optimum functioning of biological systems. It is interpreted as the concept of feeling good about one's abilities, functioning and body structure. Disease is identified in accordance with a negative self perception and suboptimum functioning. Medical and technological interventions that add new or improve on existing abilities of human beings are the consequences of this model. It will be increasingly difficult to distinguish between NBIC ‘health products’ leading to "therapies towards the norm" and "therapies that will exceed a norm".

 

Under this transhumanist model, disabled people can opt to be fixed not only to a norm but also to be enhanced, augmented above the norm (e.g. giving bionic legs to amputees, which work better than the "normal" biological legs). This follows the transhumanist vision of today's so called "non-disabled" people who believe that every human body is defective -- the Transhumanist type. [13]   The transhumanist model is, in essence, a variation of the medical, individualistic, deficiency model.

 

The focus on a medical view of health, disability and disease and the increased ability of science and technology to intervene, change and modify characteristics of humans and their body increases the tendency within the industry and society to medicalize/transhumanize the human body, its characteristics, and its problems.This model leads to a subjective understanding of health in which anyone can consider themselves as "unhealthy" and could demand treatment for themselves based on a self-identified need. It leads to those with the most persuasive voice and economic clout controlling the research agenda and its applications. It results in "individualized" medicine and technological solutions for the self-identified problems of those who can afford the "fix" -- the affluent.  The solutions that emerge from this model lead, among other things, to an increase in the 10/90 gap and a growing inequity between poor and rich.

 

 

Setting the Course for a New health Policy/Research Agenda

 

A new health policy/research agenda is called for to address a) the new understanding of disability, b) the needs of disabled people and other marginalized groups, c) the emergence of the transhumanist model of health and disease and d) the increased medicalization / transhumanisation of human beings and their characteristics.

 

To begin, a new analytical model needs to be built. This model would support a broader definition of health and health research -- a definition that goes beyond a medical focus on "burden of disease" and leads to equity in health and in the use of health resources. New instruments need to be designed for measuring health, given the lack of fit of the DALYs. These new instruments must include the societal dimension of disability and health, and societal solutions. Public policies, programmes and legislations need to be examined to ensure that they are free of bias that devalue disabled persons and other marginalised groups and do not contribute to their marginalisation, exclusion and poor health.

 

Using the framework a new research agenda can be developed. From the beginning, this work must actively involve disabled persons and other marginalised groups; their assessment of what they need to be healthy would inform the development of the research framework and the nature of the research questions. Several core sets of questions would likely emerge. These include questions focused on:

 

1. Identifying the nature of the problem. For example, “Is more health gained by fixing a person with a certain characteristic or by fixing the societal parameters?” or “Taking into account the societal realities of disabled persons, are medical fixes affordable, feasible, and the most efficient use of resources? Do societal solutions better serve the persons in question, lead to improved well-being, broader health equity, and better use of limited societal resources and research dollars?”

 

2. Probing for existing biases in existing policy, research and measurement instruments, and pointing to ways for removal of the biases. For example, research needs to be undertaken to determine the extent to which many already medicalised characteristics are indeed medical conditions in need of medical interventions or whether they simply reflect intolerance of diversity and the subsequent pathologisation of anyone different from the norm. Research would need to explore who gains and who loses when these biases are left unchecked, and the resulting impact on achieving health equity, the MDGs and reducing the 10/90 gap in health research.  For example, how useful is the definition of unipolar major depression as one of the leading global "burdens of disease" [14] for understanding what the "problem" is, its root causes and whether medical/drug interventions are the most efficient way to deal with the "problem"?

 

3. Identifying the determinants and co-requisites for health of disabled persons. These would focus on the non medical components of health as they relate to disabled people and would allow the measurement and monitoring of policy decisions and their impact on disabled people and their health.

 

4. Monitoring shifts in the understanding of health and disease following advances in science and technology (see transhumanist model) and identifying and monitoring shifts in health research resource flows.

 

5. Measuring the impact of new technologies on the health of disabled persons and other marginalised groups. How would the emerging and converging NBIC technologies be best used to increase maximum health -- in its fullest sense. How can research agendas for emerging and existing technologies be shaped to decrease rather than increase the 10/90 gap? In the case of nanotechnology, for example, an informed research agenda may identify that more money should be invested in Nanowater [15]  -- whose application might provide cheaper ways to clean and desalinate water, benefiting many -- than on technologies to give humans new abilities through bodily modifications, which can be afforded by and would help only the affluent few. 

 

6. Monitoring and evaluating the governance of the entire research process and subsequent technological developments and the extent to which disabled persons and their values have informed them. Questions would probe for biases in the governance, monitoring and evaluation processes. They would point to ways to ensure that disabled people and other marginalized groups play an active role in the development and applications of research agendas and new technologies, in defining science and technology and health research questions, and in the decision-making regarding health, science and technology and health research priorities. This work would be underpinned by the establishment of an ethical framework for conducting critical analysis and evaluation of emerging technologies -- NBIC -- actively involving disabled people and other marginalized groups to ensure that their rights are protected. A core part of the overall governance would be the establishment of a network of disabled and other marginalized people to provide guidance for shaping the policy and research questions, agenda and priorities and the most effective and equitable use of new emerging technologies.  

 

A policy and research agenda that perpetuates a pervasive bias leading to the pathologisation of people different from the norm, and supports their prevention, marginalisation, exclusion and elimination, must be questioned. It results in gross inequities and discrimination against disabled people, and has opened the door to the encroaching transhumanist model and its subjective definition of health where anyone can consider themselves as "inherently unhealthy" in a medical sense in need of a medical cure.

 

A new framework for disability, health and health research, grounded in and informed by the lived experience of disabled and other marginalised people, is imperative to achieve health equity and improved health status for the world's majority marginalised population, to meet the MDGs and to reduce the 10/90 gap.

 

Word count: 2,336 (without footnotes) 2708 (with footnotes)