Disability in a Disenchanted World

modern disability

In my last post I shared some of the ways disability was understood in the pre-modern, enchanted world. In this post I want to pick up where I left off and describe how the understanding of disability has changed since the Reformation. Crucial to understanding the shift in social imaginary concerning disability is understanding the shift from an enchanted worldview to a disenchanted worldview.

Disenchantment has many aspects, but I want to draw attention to two. First is an inner and an outer dimension. The inner side of disenchantment involves replacing the porous self with the buffered self. This means that all thoughts and feelings are understood to exist solely in the mind, separate and distinct from the rest of the world, which is outside the mind. Second, as a result of this interiorization, a new vocabulary was developed to explain and describe this new interior world. In some sense, the previously enchanted world has now been moved inward.

This move from exterior to interior is extremely important for understanding how disability in general, and the treatment of people with disability in particular, changed over the last 500 years.

Reformation and Early Modernity

Perhaps the most infamous remark Martin Luther made concerning disability was his suggestion to drown a boy who, according to him, did nothing but eat and excrete all day long. “I simply think he’s a mass of flesh without a soul. Couldn’t the devil have done this, inasmuch as he gives such shape to the body and mind even of those who have reason that in their obsession they hear, see, and feel nothing? The devil himself is their soul.”

Obviously, this view that persons with specifically intellectual disabilities have no soul but the devil is problematic. However, it is important to understand that Luther was not making a distinction between people with a disability and nondisabled persons. Rather, it was between humans and children of the devil.

In Luther’s times, however, it was taken for granted that human physical existence was a burden: grotesque, painful, dirty, oozing, stinking, sick, formless, and, due to its manifold desires, knit up with an equally messy world. Luther therefore saw disabling conditions as inseparable from human life. Anomalous cases, such as that of the boy at Dessau, he assumed were not human life at all. He thus had no category of human life as “disabled,” in the sense of the contemporary use of that term, because disability was an ineradicable part of all human life.
– Stefan Heuser

Consider also that Luther maintained that it was the devil, given permission from God, that caused disability and disease as punishment. The devil was the means by which God punished humanity. Yet, “…the problem of humanity is not disability, sickness, or otherness… his interest is in fallen humanity who cannot achieve their salvation.” This emphasis not on the unique problems of humanity (sickness, disability, etc.) but on our inability to be justified before God on our own. Thus being a person with a disability or without is irrelevant in the sight of God.

So on the one hand, Luther, while representing a shift in the social imaginary between the medieval and modern worlds, still very much saw the world as enchanted. On the other hand, he, along with many others, helped to usher in a radical new way of understanding the world we occupy.

Two other figures of import in this period are Paulus Zaccias and John Locke. Briefly, Zaccias wrote the first essay concerning the the relationship between medical and legal problems. Specifically, the categorization of people with intellectual disabilities into groups.

“Slow learners” were those who can marry and even be held legally accountable for at least some of their actions; “fools” can be barely instructed and permitted to marry, but only by judges; and the “stupid” or “mindless” are excused from penalties of the law and cannot marry, primarily because they cannot understand or receive the sacraments. About the dumb and deaf, [Zaccias] confessed, “we cannot correctly include them among the mindless or among the fools, and yet it cannot be truly affirmed that they are of sound judgment.”
– Amos Yong

This connection between an individual’s mental capacity and their legal rights will come up again below. But, again briefly, a look at John Locke’s position. Locke defined humans as beings capable of rationality and abstraction. Therefore, those who are unable to were not considered human.

Locke argued that if we assume bodily defects make monsters (which all his contemporaries agreed), all the more should we assume that mental or rational defects exclude one from being considered human.
– Amos Yong

This line of reasoning ultimately leads Locke to support infanticide, because those incapable of reason were, “neither moral nor soulish creatures.” However, unlike Calvinists, for whom the morally depraved and intellectually disabled were lumped together, Locke held that since the intellectually disabled were, by definition, incapable of rationality, “…and therefore not reprobate but simply excluded from the class of those capable of an afterlife.”

Institutionalization

Jumping ahead a couple hundred years, Amos Yong describes three periods in the history of intellectual disability in general, and Down Syndrome in particular: institutional emergence and development, period of sociomedical control, and deinstitutionalization. This trajectory must be understood in light of the shifting social imaginary in general, and in particular the new medical technologies and discoveries.

By the early nineteenth century, hospices like that at Ghent, which had spread all over Europe and America, had been transformed and in many places replaced by asylums (at worst) and almshouses (at best) that either contained or sought to meet (sometimes attempting both) the needs of a wide range of impoverished people, including those with intellectual and physical disabilities.
– Amos Yong

The father of special education, Edouard Seguin, continued the process of reform that began several centuries earlier but directed it towards those persons with disabilities. This was due in large part to a widespread optimism that these institutions could, even for the most severely impaired person, teach and reform within their walls. However, it soon became clear that there were those for whom no amount of education or reform would make any difference in terms of curing their impairments. These so-called “unteachable idiots” began to crowd the asylums.

At the same time, the moral structure of society was also degrading, with the rise of prostitution, alcoholism, etc., and, “…blame for these ills was increasingly shifted onto the feebleminded.” There were many publications that warned of the dangers that the feebleminded would reek on society – anything from the sexual assault of innocent women to the numerous pregnancies and subsequent children (it was believed that the feebleminded had more children).

As a result, the asylum slowly transformed from being a symbol of the “Age of Improvement” motivated by visions of therapeutic and educational progress to being a symbol of national degeneration hounded by the “menace of the feebleminded.”
– Amos Yong

The confluence of these two forces – the perceived social and moral degradation blamed increasingly on those with intellectual disabilities and the realization that there are some for whom no education will change their impairment – led to drastic measures.

If moral imbeciles could not be deterred by punishment (since they lacked the kind of abstract thinking that could make connections, follow out consequences of their actions, or learn from past mistakes), then asylums needed to develop alternative means of social control. The medicalization of the feebleminded would soon turn to increasingly ominous directions with the development of “scientifically legitimated programs” of intelligence testing, sterilization, and eugenics designed to deal with the problems of imbecility.”
– Amos Yong

Sociomedical Control

I don’t want to under emphasize the degree to which intelligence testing has been damaging for generations of people with (and without) intellectual disabilities, but I do want to focus on the later two methods described above – sterilization and eugenics. These two are closely related, as sterilization was a frequent measure used by those advocating for genetic purity in America and then later Nazi Germany, where much more horrific means were used.

Institutional sterilization was argued for by many prominent doctors, legislators, and scientists. Paul Lombardo  writes: “[l]awmakers were seduced by the idea that people are marked with the genetic residue of their ancestors. Government, they said, could sort the fit and the unfit and decide which citizens are worthy to have children.” Especially noteworthy is the 1927 Supreme Court case Buck v. Bell. What was being challenged was the state of Virginia’s sterilization law, one of many such laws passed in states across the US, with the first eugenics inspired sterilization law passed in Indiana in 1907.

It is a complex case, but Lombardo summarizes it this way:

In Buck, the theory that poverty, disease, and unruly sexuality could be wiped out by state mandated surgery was applied to a young Virginia woman, whose family history was represented in court by the evidence captured in a pedigree showing hereditary moral degeneracy and illicit sex, as well as mental defect reappearing through three generations of her family.

The outcome? The Court upheld the state law, and eugenic sterilization laws were legitimized across the country. Senior Justice Oliver Wendell Holmes, Jr. had this to say about the ruling:

It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the fallopian tubes. Three generations of imbeciles are enough.

It is important to mention that Nazi Germany cited Buck v. Bell as precedent for their eugenic and sterilization programs, and, as terrible as this is, more extreme steps were taken in the extermination campaigns enacted with the intention of eradicating the intellectually and physically disabled.

Deinstitutionalization

Due in part to the realization on the part of the public about the conditions and treatment of people with disabilities in institutions, and, I would argue, in part because of the growing political movements in the 60’s and the accompanying shift in the social imaginary, deinstitutionalization began to slowly occur.

“Deinstitutionalization was… motivated by the conviction that ‘all people are equally valuable and deserve to be part of a normal world.'”
– Amos Yong

This process was, like so many other movements, a double-edged sword. The freedom from institutions and the abuses suffered there was an enormous gain, however, there was for many a certain dependence generated in the institutions that prevented many from being able to successfully live outside of that world. Not to mention that whereas persons with disabilities were once controlled by these institutions, after deinstitutionalization, they were controlled by, “…individualized educational programs (IEPs) and ‘rituals of assessment and strategic placement.'”

There was another double-edged sword, one that cut through the community and the individual.

Now deinstitutionalization had made it possible for people with intellectual disabilities to establish a sense of personal self-identity and to be empowered as individuals with responsibility. At the same time, given the challenges faced by people with intellectual disabilities, it was essential that this new paradigm emphasized social services, professional support networks, and most importantly, the cultivation of genuine friendships. Herein lay a tension between a focus on individualized and personal supports on the one side and an emphasis on social participation and community development on the other.
– Amos Yong

Speaking personally for moment, I can attest to the challenges of living in a post-institutional world. The reality of my brother’s situation is that he cannot live on his own, make his own decisions, or be held responsible for his well-being. He needs other people to do that for him. Yet, because of the the laws and policies that exist, he is not given all of the support that he needs when it comes to in-home care or entering the workforce. On the one hand, policy encourages persons with disabilities to enter the workforce, and to be able to live where they choose. On the other hand, for persons like my brother, with severe disabilities, they aren’t able to work and aren’t given the support or funding required to help him do these things. And when it comes to living arrangements, he requires 24-7 care, and to save money they want him to live with other people to “share services,” which just means that the staff take care of more than one person at a time, endangering my brother and everyone else. So as a result my brother is not able to live where he chooses, but is forced, because of cost saving measures, to live with others, and doesn’t receive the care he deserves or needs.


I will be exploring, in more depth, the trajectory I’ve outlined, and some of the forces and impulses that helped to propel it forward.

One final note: there have been many examples throughout history of people treating persons with disabilities with love and dignity. My emphasis has been, on the whole, on the the negative side of how disability is understood. This is for two reasons. First, the strands I’ve outlined in this post and the last are the dominant positions that have shaped our current social imaginary. The way that we as a society respond to persons with disabilities comes from this historical outline. Second, if we are going to change the way we respond to persons with disabilities it is helpful to understand all of the elements that have gone into our current way of responding. Whether or not we like it, the preceding descriptions of disability have not gone away for the majority of our society. Understanding where those came from, I hope, will be helpful in finding alternative ways of responding to and understanding people with disabilities.

 

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