Autonomy, Agency, Me & E.

As one with E., have I authority and control over my own life? Have I autonomy: can I make decisions that reflect my moral code or my perceived reason for being? Do I retain agency: the authority to act for myself?

I ask these questions outright because there are those who believe that we persons with E. must not have charge of ourselves. They feel we may not act for ourselves, nor should we be allowed to exercise authority or control over our lives. Some believe persons with E. to be thoroughly discredited human beings, and they express these feelings openly.

An artifact of this point of view, characteristically experienced by persons with E., is social disintegration. It means a loss of unity or cohesion, and in the case of an individual, it can mean the loss of her accustomed rank, status, or prestige.

Social disintegration often takes place once E. has been disclosed. But it also takes place when someone witnesses our seizure activity and is “creeped out” by it. Suddenly, an individual loses status within her family, her workplace, her community. Where once her actions were admired, they become scrutinized; though her decisions were trusted, they are now suspected. She loses responsibility for important and unimportant things.

But the most distressing and frustrating thing she can lose authority and control over is her life story. A significant element of individual identity formation is control of one’s personal story. Of greater consequence is a sense of it's ownership. Ownership is expressed as the individual’s ability to tell her story to others, in her own manner, without hinderance. When a person is stigmatized by disability, ownership of her biography becomes threatened, and along with it, her sense of Self.

Inaccuracies and distortions are commonplace in the telling of a disabled person’s biography. Family members, spouses, caregivers and physicians frequently offer biographical information in the presence of the disabled, replete with errors. When they object or offer amendments to their own histories, the disabled are commonly rebuked and told they are mistaken, that their comments are unimportant, or that their memory of past events is faulty.

This sort of interplay cues the listener to draw a conclusion: disability has rendered the individual incapable and dependent, and so ownership of her story is void and becomes the property of its teller. Evidence of such supposition comes quickly, usually with the listener’s first question and who is addressed: the storyteller or its subject.

Whom the listener addresses is important: his action affirms or denies the agency of the disabled. It accepts or rejects her equality.

Like many of us, I have suffered the indignities of biographical distortion, and have had it explained to me after the fact that the storyteller knew it was inaccurate, but that it was "for my own good" in some way. Usually, "my own good" referred to a desire on the part of a family member to ensure that the doctor would take me seriously as a patient, and give me his unstinting attention.

My life story is important only to me and I feel secure in my agency. As an adult, I entrust the telling of my story to only one individual, apart from myself: my husband. He, better than most, understands the seminal nature of my personal tale. With a doctorate in folklore and mythology, his sensitivity to this crucial aspect of my life, is astonishing. But his is a rare outlook.

Unfortunately for many of us with disabilities, and particularly for those of us with E., the sensitivities of our helpers are not often keen. They become emotionally and intellectually charged with the notion that in order to protect us, they must diminish us and so often act against our most essential Self interests.

In 2003, Marta Russell wrote a commentary, "Nothing About Us Without Us: Human Rights and Disability":
"...it remains the case that impairments are viewed as abnormalities and people who have them become devalued objects of the medical and social services establishment… the medical model persists and ignorance of the social model of disablement dominates. The social model emphasizes that institutions...impose "disability" upon those who have impairments by segregating and excluding them from the rights others enjoy."

She cites proposed language to a United Nations Disabled Peoples' Bill of Rights (which I am excerpting here). It offers insight into the widespread habit among the non disabled of disenfranchising us. It includes assertions that disabled persons must have the right to: "...personal integrity, freedom from... abuse by caregivers; to bodily and psychic integrity, including autonomy in decision-making...".

For generations, the E. community has been cocooned inside the "personal tragedy" model that suggests our epilepsy is sad, but individualized. We have been silent, reclusive, and at the mercy of the medical establishment. Coming out socially, even to speak amongst ourselves about our disability, has been a brave move for us to have made.

In time, we will find the means to step out more confidently, and perhaps more assertively. For now, we must be aware of the progress we have made and tuned into the possibilities we share for our collective future.