I AM NOT MY DISABILITY: THE INCOMMUNICABILITY OF DISABILITY
What is a disability? Is it a severe mental or physical limitation? If this is so, are obese people or drug addicts disabled? Both can be either severely physically and/or mentally limiting. Is it a blessing, granting people a different and positive viewpoint on life? Or is it a curse, confining and restrictive to otherwise able human beings? It seems that no matter how one looks at the issue, both disability and the disabled community are increasingly difficult terms to define. It is incommunicable.
This flies in the face of the old axiom that “You cannot not communicate.” I take communicability to mean understandability of experience. While the ADA and other laws have defined (dialogically) some terms that make disability rights understandable, disability itself is incommunicable. What I argue is that disability and the disability community are relative terms that can actually be harmful to a person if they are rigidly defined to medical diagnosis or reliance on assistive devices. To understand why I am against such definitions (i.e. wheelchair user or cerebral palsy sufferer) it necessary to relate how such ambiguous terms have been communicated through history.
Dialogue is described by John Durham Peters as sharing the same time and space.1 Its uses include the clarification of terms and the creation of dyadic relationships (where we talk to each other.) and creating a sense of shared understanding and meaning. Dialogical contexts include role-playing, philosophy, and drama, where time and space are shared. Because dialogue is fundamentally a dyadic sensation, where the meaning or truth of a statement is typically evaluated by agreement on common meanings for terms, I maintain that any set dialogical definition of “disability” or “disability community” will ultimately be more restricting to a person with a disability than would no definition at all. While it is true that a dialogical definition reached by a common meaning and sharing of inner experience on which laws have been established to protect disability rights, this dialogic search for clarity of terms forces on the disabled an illusionary collective mindset that focuses on common limitations, not abilities.
Dissemination however, would provide a much more personal definition of “disability”, thus allowing for interpretation and the personal development to the notion that I am not my disability. Dissemination seeks no definition: it is open for all to hear. Dissemination is broadcasted to an open-ended destination; it is a feature of all speech, according to Peters.2 (Shepard, et al., 212) I argue that it allows for autonomy in speech and thought, throughout what we might call the “disability community”. Recently, it has become popular to say that there ought to be one word to characterize the disabled experience, and that this definition should point in effect to the notion that we are all handicapped.
Though I am sympathetic to such efforts, I see the search for dialogical definitions of disability “community” as limiting to the concept of community, although such definitions based on assistive devices or medical diagnosis as helpful to the individual in gaining autonomy, not the community. (“deaf community”, quadriplegics, “wheelchair-users”, etc.) It is up to the individual to interpret what his/her disability actually means through self-discovery. This is why an outlook of dissemination and interpretation is helpful, and why I argue that the community of disabled people cannot be defined by the limitations of its members, but instead by its individual overcomings. This notion that “we are all handicapped.” is not new.
As far back as 1894, Charles Horton Cooley developed the concept that “Transportation is physical, communication is psychical.” (Peters, 184). He saw all men and women as being sensorily handicapped, but by means of new media transportation like trains, radio, and telegraph (he did not include wheelchairs and speech aids.) they could more easily bridge distances of communication between distant people. This is an attempt to squeeze dialogic thinking into media of dissemination; the sharing of two mutually held ideas and the forming of one psychic understanding.
It was Franz Kafka who challenged the idea that media could transport our souls. Humanity knows that “written kisses never reach their destination. Rather they are drunk on the way by ghosts.” (Peters, Franz Kafka to Milena Jesenkà.) So, they have created trains, telegraphs, and aeroplanes. But, it is no good. In other words, the new communicative media could not cure Cooley’s handicap, being blind and deaf to a larger social world. It is not that “the new communication has spread like morning light over the world,” (Peters, 187-188) as Cooley would have it, but rather, that like the privileged page gifted with the emperor’s last message in Eine kaiserliche Botschaft (1919), the message is never read nor delivered: “The Emperor—so they say—has sent a message, directly from his death bed, to you alone, his pathetic subject, a tiny shadow which has taken refuge at the furthest distance from the imperial sun.” 3 (Kafka trans. Appelbaum, 49) This is a challenge to Marshall McLuhan and his school of thought. The medium may be the message, but it might not be the soul, by which I mean handicaps cannot be reasoned dialogically. As Peters’ noted, Kafka’s Verfremdung [estrangement] explodes the dialogical concept of sharing which is inherent in independent living, but not to disability.
These days, a popular phenomena within disability culture if I may call it such, is the independent living movement. The aims of the movement are to provide persons with disabilities the least restrictive environment in which to live. Which is to say, handicaps are removed through nurse aides and/or assistive devices, or whatever is needed. These aims are fine and noble. But, it raises a question: is the notion of independent living defined? Who has defined it? Under what terms? (Note that here there is a dialogical tint.)
As I have stated, any drive towards freedom should come from the disabled person himself/herself, not as part of a medical examination. I am purposing that it is when the disabled are independent themselves that they really begin to uncover their true handicaps and develop methods to overcome them. Those methods and true disabilities will be individual and as such not open to clear dialogue, but dissemination.
Is independent living harmful to this end? No. One should realize that when one says “independent” we are disseminating. It can mean different things, and levels of independence, just as Wittgenstein claimed that “Water!” could be anything not referring to water itself when used in isolation as a word.4 (Wittgenstein trans. Anscombe, 10) In just that way, one can learn to laugh at one’s own handicap. It is a language-game, and I must play with it in different ways. In effect, the disabled must depend on others as must depend on others. It is wrong to say we don’t need others. We are all handicapped, I believe, robs the individual of his or her own uniqueness.
In summation, is the drive for dialogical clarification of terms and truth misplaced? Perhaps so, but not without benefits. Laws and media have furthered the rights of people with disabilities. However, the community cannot risk finding the one true definition. The aim should be not the dialogical we are all handicapped, but rather a product of dissemination. I am not my disability. As Goethe’s Faust put it: “Name is but sound and smoke, befogging heaven’s blazes.”5 (Goethe trans. Kaufmann, 327)