Rethinking Our Concepts of Disability to Meet Our Changing Social Worlds – James Moore

A paper published recently in the Journal of Medical Ethics explores the relationship between disability and enhancement, and the importance of social context and environment in how they get defined. According to the group of authors, led by Nicholas Greig Evans, a Professor of Philosophy at the University of Massachusetts Lowell, the most popular ways of thinking about disability and impairment often either discount certain types of disability or patronize the person with the impairment.

Going further, the authors explain how popular accounts tend to ignore how social stereotypes about disability can impact even those who do not identify as disabled or impaired themselves:

the tendency to focus on specific and often paradigmatic cases of disability and elide discussion of enhancement has a serious downside: it has the potential, among other things, to keep us from understanding cases of disability and impairment that are less apparent and well recognized. Aside from limiting our knowledge and understanding, it also keeps us from making interventions or undertaking further research that might concretely assist those populations . . .

There have been many different models of disability proposed over time, ranging from models based on social factors and human rights to those that link disability to technology. Recent events, like the Covid-19 pandemic and the associated economic and climate disasters, moreover, serve as ongoing reminders of how our abilities to act freely as individuals are always shaped by the broader socioeconomic dimensions of our lives. This insight echoes what critical psychologists have been saying for decades.

According to Evans and the other authors, most people thinking seriously about these issues agree that disability is a widely heterogeneous set of phenomena, so much so, they note that some have argued it to be a meaningless category in the abstract. For them, most existing models dont account for the way assumptions about disability are intertwined with assumptions about enhancement, insofar as both are shaped by which skills happen to be considered most valuable in a given social setting.

How we define either disability or enhancement, they propose, depends on how we compare the behaviors of a specific individual with a statistically relevant cohort group. Cohort group studies track changes in behavior and expressed capacities over time across individuals who live under similar conditions.

With this in mind, the authors suggest it could be useful to think about human abilities in general in terms of the concept of capacity space, which they define as the dynamic relationship between an individual person and their social and environmental milieu. From this perspective, phenomena we tend to call disability are inherently dynamic because they change over time, and they are relational because they are constituted through interactions between persons and the social tools (e.g., digital technology) they have available.

The concept of capacity space, the authors propose, provides a useful starting point for understanding the full variability and breadth of disability as a ubiquitous characteristic of the human species. To help illustrate this, they present a series of case studies that depict experiences of disability and enhancement that are often overlooked in the literature.

For example, they point to certain dysgenic effects in soldiers after WWI, where a high number of casualties left young men who were previously considered physically unfit among the only individuals available for military service.

In this instance, individuals who had been considered disabled relative to other soldiers before the war could have become normal, or even enhanced, simply because the cohort group against which they were judged had changed. This, the authors explain, is an example of how ones capacity space can be transformed even when ones individual abilities remain relatively consistent.

Another example they discuss is the many different variations of chronic pain. This is true both within the same individual as well as across different individuals. Some days are, of course, better than others, with factors ranging from diet, climate, and social contact, possibly having some effect on how chronic pain is experienced and managed at any given time.

Symptoms related to a diagnosis of Ehlers-Danlos syndrome (EDS), a hypermobility condition, for instance, might be relatively mild when compared to other individuals who are diagnosed with the same condition:

At times, the person is simply more flexible and mobile than their cohort, making them a better spokesperson. At other times, their joints dislocate unexpectedly, and they are incapacitated in significant ways. Is this person enhanced, disabled, or both, relative to their cohort?

Thinking about disability as something that any human can experience under the right set of conditions, and in entirely personal ways, represents a clear departure from approaches like welfarism, which posits a clearly defined line between disability and ability.

The authors define welfarist approaches to disability as those that posit a stable physiological or psychological property of a subject S that leads to a significant reduction of Ss level of well-being in some circumstance. From this perspective, disability is defined not according to how an individual can perform socially, but according to how the individuals sense of well-being is impacted by one of their personal traits.

Enhancement, by contrast, would be defined under welfarism by any stable property of a person that leads to a significant increase in that persons well-being. By focusing on psychological well-being, rather than social structures or medical status, the authors suggest, welfarist approaches to disability and enhancement account for something important that other models tend to ignore.

And yet, by framing disability as something intrinsic to each individual person, and defining welfare solely in terms of well-being, welfarist accounts risk marginalizing the consequences of prejudice and institutional discrimination for those who do not conform to conventional social expectations. They also fail to adequately account for the ways disabilities have different social implications across time and space, beyond individual well-being.

Such dimensions, the authors claim, are essential to experiences of disability. With their concept of capacity space, they underscore how time and space are not abstract categories; like disability itself, they are complex social realities that shape what individuals consider possible for themselves and others.

The authors are also cautious not to discount sociohistorical accounts of disability. Instead, they describe their project as complementary to such accounts. And yet, the importance of economics and social factors related to race and gender are given relatively little attention in their article.

It is hard to imagine how a cohort, or any other social group, for that matter, could be considered relevant to a persons lived-experience without accounting for the way self-image and self-performance are assigned value today largely in terms of capital.

Under current conditions of global capitalism, social networks are unavoidably shaped by the technologies, information, and capital that its members have access to. Indeed, enhancement and technology are so obviously linked in todays hyperconnected world that it would make little sense to propose a concept of one that cannot account for the other.

While statisticians have the luxury of selecting cohort groups based on analytic convenience, this is not true for those whose embodied natures fail to align with the skills deemed most valuable in todays information-based markets. These are issues that movements like transhumanism and posthumanism have been engaging with for decades, but they are, unfortunately, not given much attention by the authors of this paper.

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Evans, N. G., Reynolds, J. M., & Johnson, K. R. (2020). Moving through capacity space: Mapping disability and enhancement. Journal of Medical Ethics. (Link)

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Rethinking Our Concepts of Disability to Meet Our Changing Social Worlds - James Moore