Illness, Disability, and Dignity

By Yusuf Lenfest

Medicine is meant to heal our ailments and treat our illnesses. Our deep knowledge of the body and the numerous mechanisms that contribute or correlate to good health is considered a triumph of the medical sciences. We can now perform transplants with relative ease, offer prosthetics to those who require them, and even cure some forms of blindness. But so much of modern medicine today is built around quantitative data—family histories, success and morbidity rates, pathologization, statistical analyses—without much conscious consideration of how one understands, copes, or derives meaning from their experience. True, such data is gathered for the purposes of more accurate diagnoses and as the first defense against an illness or medical condition; but physicians are taught to concentrate on the cure, and while few would dispute that that is certainly a good thing, we also ought to keep in mind that excessive focus on a default measure of “normal” does not necessarily allow us to express the diverse ways of being in the world nor adequately account for the ways in which people embrace their conditions.

Some autistic individuals, for example, believe that autism should be accepted as a difference and not as a disorder. That the autism spectrum is precisely that—a spectrum—is important: on the one hand, statistical analysis may reveal that these individuals are in the minority versus the average population, only 1%; but on the other hand, to take a different perspective, it means merely that the characteristics of these individuals manifest in a way that is atypical with how the institution and culture of medicine classifies them. Lest we forget, medicine is part of the dynamic structure of society and social norms—in the background and the foreground—of knowledge-making, and it is imbedded in place and society, as part of the structures existing in institutions. It is not possible to consider theoretical or epistemological claims apart from practical knowledge and applied sciences.

Getting sick is a fact of life, dying is a fact of life, and difference too, whether in the form of autism or blindness, is also part of the human condition. The sooner we come to terms with this, the more readily will we be able to wrestle with these existential questions. We must then ask, how or at what point does an illness or a disability or a difference itself become part of one’s person, part of their very core and essence, and how do we make sense of it outside of medical classifications or pathologies, and give it meaning?

Many religious responses exist, ranging from considering these different ways of being as trials in life or tests of faith, to notions of expiation or merely as God’s will. To be sure, religious and theological responses are as diverse as the many conditions themselves. Religious interpretation is undoubtedly a type of meaning, and can be a form of dignity in the person wrestling with illness, or a way for them to rise up above the clinical portraits and pathologies and truly assert their humanity, whether that comes from within from their own presence, or whether they believe it is God-given. Today, 80% of people across the world identify with a religious group or espouse some belief. Even for those who are not affiliated with any religion, including non-theists, are still able to proffer a “spiritual” response, insofar as spirituality in medicine, as the term has come to mean and be deployed, may encompass religious as well as humanistic responses.

I would for a moment like to look at a possible response to illness or disability: one that has potential to be both meaningful and empowering. It comes from the German poet, Rainer Maria Rilke (1875–1926), in his poem, “Going Blind”:

She sat just like the others at the table.
But on second glance, she seemed to hold her cup
a little differently as she picked it up.
She smiled once. It was almost painful.

And when they finished and it was time to stand
and slowly, as chance selected them, they left
and moved through many rooms (they talked and laughed),
I saw her. She was moving far behind

the others, absorbed, like someone who will soon
have to sing before a large assembly;
upon her eyes, which were radiant with joy,
light played as on the surface of a pool.

She followed slowly, taking a long time,
as though there were some obstacle in the way;
and yet: as though, once it was overcome,
she would be beyond all walking, and would fly.

This poem is a beautiful evocation of the pensiveness and movement of a woman who has lost most of her functional vision and has not yet really adapted to blindness, yet who is on the cusp of a type of freedom—almost transcendence. It begins with her seated at a table much like the others around her; the only noticeable difference is what seems to be her slight self-consciousness. We learn then that this self-consciousness is partly due to her slowed physical mobility on account of her still new experience of acclimating to her loss of sight. But in the end, as we learn that she is on the verge of embracing her new state, it is also expressed as a type of “joy” as if, once entirely blind, she would be truly liberated, having newfound grace and presence, and “would fly.”

The woman’s disability, her blindness, might easily have been interpreted as a lack of sight. But in fact her reality is much different from what one might project upon her. She has found meaning, blessings, or even freedom in her loss in a way that a sighted person cannot quite fathom. She is adjusting to her loss of sight, to be sure, and her self awareness reveals this fact as she re-learns how to navigate the physical world, yet in so doing, she embraces her new condition in a way that allows her to “overcome” and to be in the world in a way that takes her “beyond all walking.”

In accounting for the diverse expressions of illness or disability then, we must consider the diverse experiences arising from the interpersonal interactions and exchanges which both carry and transmit meaning and even culture. The ways in which we live in the world—our ways of being-in-the-world and interacting with it and with others: acting, reacting, evaluating, altering our minds, our beliefs, our culture—is not simply an expression of culture but in fact the very creation of culture. In nearly every social exchange in which we take part, witness, or learn about, we sense and evaluate culture and by extension position ourselves either within it or in contradistinction to it.