In 2003 the World Health Organization (WHO) announced its “international classification of functioning, disability and health” and to mark the occasion they invited photographers from around the world to enter a contest called “images of health and disability”. As WHO put it:
“The aim was to raise questions about what health really is, and awareness of how everybody in the course of their life experiences some kind and degree of health decrement or disability.”
The photo above by Janiel Aneculaesel was one of the winners under the category of aging.
As WHO explained the ICFDH the classification was intended to contextualize and organize physical life and its gradients into a forum for understanding human rights:
“The ICF puts the notions of ‘health’ and ‘disability’ in a new light. It acknowledges that every human being can experience a decrement in health and thereby experience some degree of disability. Disability is not something that only happens to a minority of humanity. The ICF thus ‘mainstreams’ the experience of disability and recognises it as a universal human experience. By shifting the focus from cause to impact it places all health conditions on an equal footing allowing them to be compared using a common metric – the ruler of health and disability. Furthermore ICF takes into account the social aspects of disability and does not see disability only as a ‘medical’ or ‘biological’ dysfunction. By including Contextual Factors, in which environmental factors are listed ICF allows to records the impact of the environment on the person’s functioning.”
The “ruler of health and disability” is further described as a “classification intended for a wide range of uses in different sectors. It is a classification of health and health-related domains — domains that help us to describe changes in body function and structure, what a person with a health condition can do in a standard environment (their level of capacity), as well as what they actually do in their usual environment (their level of performance). These domains are classified from body, individual and societal perspectives by means of two lists: a list of body functions and structure, and a list of domains of activity and participation. In ICF, the term functioning refers to all body functions, activities and participation, while disability is similarly an umbrella term for impairments, activity limitations and participation restrictions. ICF also lists environmental factors that interact with all these components.”
One is of course reminded of Arthur Okun’s “misery index” for the pairing of health factors with environmental conditions has a kind of indexed elegance. Okun of course calculated how much inflation the body politic would tolerate against rates of unemployment. He found that the body politic will tolerate modest rates of inflation if jobs follow.
Changes in body function and structure vs. standard environment includes something more complex than Okun’s economic calculation for the ghost in the machine is the social construction of normalcy or what the disability studies scholar Robert McRuer calls “compulsory able-bodiedness”. Able-bodiedness is an agent of industrialized societies and it remains central to the lived experiences of people with disabilities because the value of a healthy body is socially indexed in all societies.
I like the term “compulso-misery” when thinking of the hegemonic shaping of embodied value. If you’ve spent as much time as I have visiting agencies that purport to provide benefits or services to people with disabilities you’ll sense that compulso-misery is certainly not histrionic. Indeed, how much misery you can be induced to endure is a matter of culture, social influence or embodied value, financial conditions, the structural hierarchies of medicine, the military, corporate values, international relations, and narratives of heroism. These dynamics fall under “environmental factors” under the ruler of health and disability but they cannot be confronted without the kind of cultural analyses available in disability studies. In order to understand ageism as a co-efficient of disability we need to understand the cultural shift from the valuation of the old to their extreme devaluation. This symbolic and reductive transformation was not (is not) inevitable in human societies but the ways and means of compulsory able-bodiedness are inherently driven by the signatures of representational physical decline. “This could happen to you!” “Don’t let it happen, study hard!”
In America if you are over 65 and you lose your eyesight there are no programs available to assist you in purchasing assistive technology. You might do well to have a talking computer or a closed circuit TV magnifier but under the system of compulso-misery you are no longer of working age and therefore government programs that help younger people to become “rehabilitated” do not apply to you. Age has limited value. Age and disability have even less value. As I mentioned above these are not inevitable ideas. They are driven by economic and actuarial indexes and are linked to an industrial model of activity and physical value. Robert McRuer argues cogently that neo-liberalism is in this way no better than neo-conservatism and you will get no disagreement from me.
The assignation of value is the critical question for understanding disability. Pejorative value is destructive and unethical. Nazi medicine comes easily to mind. But even the conditions of nursing homes or the current rush to eliminate pensions are a part of the story. How a society envisions bodily value can only be understood by means of understanding human rights as they are relative to national practices that promote well being. Understood from within the world of medicine we could say that the cure vs. no cure debate surrounding individual disability identity can be better appreciated when physicians and health practitioners imagine “the whole patient” –which is to say that no one needs to be cured in order to have his or her full human value. This is perhaps a simple statement, but go looking for examples of this in many medical schools or hospitals and you will come up largely empty. (Largely empty is almost redundant but it’s the right figure.)
At the University of Iowa’s Institute for Vision Research where I hold a dual faculty appointment studying issues of disability, culture, and medicine, we like to think of people with vision loss as being entirely free of cultural devaluation—this is according to the best practices in patient care and to the related understanding that people who are blind or who have low vision are not second rate citizens no matter what society might tell them. Even so we must contend with issues of ageism in the larger social matrix; with disability as a de-legitimized symbolic “sign” vs. compulsory able-bodiedness. When you tell an older person that they can no longer drive they are instantly reduced and devalued in a culture that regards driving as a
matter both of freedom and o
f daily necessity. In the United States the automobile is more important than a passport as a marker of citizenship. That the elderly are terrified, that they weep in the face of losing their driving privileges is as much a social issue as it is a medical one. A society with good public transportation reduces the devaluation of bodily change. Compulso-misery, indeed.
Issues of value and embodiment are central to where we must work and live.