S. Kay Toombs and The Lived Experience of Disability

            S. Kay Toombs was Associate Professor of Philosophy at Baylor University. In 1973, at thirty years old, she was diagnosed with multiple sclerosis. Multiple Sclerosis is a progressively disabling demyelinating disease which causes the neurons in one's brain to fire less effectively. Myelin is a fatty wrapping that helps electrical information travel from neuron to neuron quickly. One main source of M.S. is an attack on myelin by the immune system, which causes it to slough off the axon of the neuron. It is a horrible disease which affects visual, motor, sensory, and autonomic functions. Lesions in the brain are also experienced. Unfortunately, it is incurable.

            Toombs came late to philosophy, receiving her PhD from Rice University in 1990. Since then, she has been prolific, writing several books, publishing many articles, and giving numerous presentations. The bulk of her work falls within the realm of phenomenology, or the philosophical study of experience. She places her illness front and center. Her work is an analysis of living with illness and critique of healthcare.

            In 1995 she wrote an essay called The Lived Experience of Disability, and I believe it is an important look at how a philosophical study of subjective experience and healthcare can come together. In it she critiques the biomedical model of disease, which she believes does very little to describe the experience of disorder. She relies heavily on her lived experience with M.S. and her resultant loss of mobility. Toombs argues, phenomenology is key to illuminating how medical practice can devise ways to “address the personal, social, and emotional challenges posed by chronic disabling diseases” (Toombs 10).

            The phenomenological concept of lived body is central to understanding this work. Lived body is how we perceive the world, not as a separate collection of individual sensations, but as a synthesis of them.  The body is not experienced as an object amongst objects, but as a lens through which we perceive and experience the world. For instance, to say one has a body is not the same claim one makes when they say they have a car (Toombs, 10). The body is a locus which pegs our position in space and the point with which we relate objects in space to our self, or egocentric space.

            Disability, especially immobility, affects our sense of lived body. It requires a reorientation of physical space. We are no longer upright and this changes our relationship with objects and our environment. Whereas we may have once conceived of objects as being near, once immobile, they become far (Toombs, 11). Everyday objects become obstacles. Shelves once in reach, are now beyond our grasp. Familiar terrain becomes cumbersome. A simple walk from the office to the classroom appears impossible for Toombs. The world becomes one of “restrictive potentialities,” where one is required to constantly modify their actions to suit the environment (Toombs, 11). In effect, the world becomes a problem to be solved. Restriction to a wheelchair expands this sense of lived body, which includes the object within egocentric space. It becomes a part of the calculation made to determine spatial orientation.    

            Immobility not only affects our relation to physical space, but to our self-perception. The gestures and ways of movement which make us uniquely our self, change. Outsiders who view and those who experience this change in corporeal movement see it as strange and unfamiliar (Toombs, 16).  Toombs describes her sense of movement as “unrecognizable,” even after years of experiencing immobility. She explains when she views herself in the mirror there is a sense of “puzzlement,” “is this reflection of me,” she asks (Toombs, 16). These effects together create a sense of what Toombs calls, “existential fatigue” (16). There is a limit to existential possibilities and autonomy. Our view of our self changes further when we consider uprightness is not simply a locus, but is a value laden perception. To be upright is synonymous with honesty or integrity. We assign value to those who can “stand on their own two feet” (Toombs, 17). The antithesis Toombs posits is, “weak-kneed” or “unstable.” We congratulate ourselves and others for their sense of independence. Many of our rituals revolve around standing up from our seats. Examples are encores or standing for applause. Those being commended or who inspire respect are asked to stand. Many religious ceremonies call for standing and singing to display adoration. Having to constantly be seated gives one the feeling of being less than, not being commendable, of constantly being looked down upon, and of being child-like (Toombs, 17). People view Toombs as dependent, unintelligent, and speak to her in the third person when she is accompanied by an able bodied person (Toombs, 17). Social convention changes. People awkwardly do things such as pushing her wheelchair for her without out asking her permission. Things we would normally see as violations of personal space, people presume she would welcome (Toombs, 17). This culminates in an irrational sense of shame. The feeling one should be able to be independent, but is unable to be so.

            Toombs proposes for effective treatment of degenerative diseases such as hers, practitioners and therapists must address the global sense and lived experience of the disorder.  They must help the patients not only deal with the objective symptoms of the disorder, but also the patients affective responses. Toombs gives the example of practical things like advising patients who have a loss of mobility to acquire a lightweight wheelchair. This helps patients retain a sense of independence. If they are unable to push the wheelchair themselves, this obviously adds to the sense of shame or embarrassment they may feel because of their dependence on others. Differences such as “using” and “being in” a wheelchair is not simply a matter of semantics for Toombs (21). They must also advise patients to see objects such as wheelchairs or walkers as extensions of bodily space rather than symbols of disability. Practitioners and therapists must also address the long-term concerns of patients and develop plans for how they may deal with them in the present. This endows patients with a sense of control over their future (Toombs, 21). Finally, at an even larger scale, allowing for better accessibility (even post-Americans with Disabilities Act) is necessary for elevating the quality of life for those with disabilities.

Toombs work can be found by searching the MTSU library or JSTOR.
Toombs CV.


DQ’s:

1.      How cognizant are we of our reactions and treatment around people with disabilities? Could we mistake helpfulness for condescension?

2.      Are we, as abled bodied people, cognizant of accessibility?  

3.      My research has found Neurologists and therapists have become better at addressing the progressive degeneration inherent in M.S. during treatment. What are some skills we can utilize when answering tough questions like, “will I lose my ability to walk?”

4.      Is an analysis of a patient’s subjective (affective) experience of a disease useful in treatment? Should we just treat the symptoms?

Quiz Q’s:

1.      Who wrote the essay I am discussing?

2.      What is the title of the essay I am discussing?

3.      Describe the concept of lived body?

4.      What is phenomenology?

5.   Is there a difference between “using” and “being in” a wheelchair? Is it just a matter of semantics?

Ugly Citation:
Toombs, S. Kay. “The Lived Experience of Disability.” Human Studies, vol. 18, no. 1, 1995, pp. 9–23. JSTOR, www.jstor.org/stable/20011069.