Narrative Inquiry in Bioethics

Are you disabled?

It depends. I need context.

Are you rendered incapable?

I am awake and sober.

Are you limited by parts of the body?

My arms are not wings.

Are you entitled to certain rights?

Yes, I am disabled.

The U.S. Government disagrees.

You read the letter?

“Due to the subject’s advanced education, the subject is no longer disabled.”¹

It was a love letter. They could have written it better. I would’ve preferred something with a little more feeling, such as: “Dear Jillian: We are breaking up. We saw you outside the building with the statue of the lion. We saw you trespass through the halls and take from the shelves a number of hardbacks and take from the woman with glasses her suggestions. You have been made too erudite, too learned. If you want to protest, if you want to continue our relationship, then un–educate yourself. It would be helpful if you worked at a factory or could not find work. It would be helpful for something inside you to hurt.”

You seem bothered by the letter from the government.

No more bothered, I guess, than if the government sent a letter rescinding my name.

The name disability is important to you then?

It is important. It is very, very important. No, it is not important. I hardly think of it. It vexes me and I need it and I should not say it that often. Today, for example, I said: You must not use the word disability too much in this interview. After all, you do not like the word, and you have named yourself cyborg, so there is no reason to use the word you already rejected. After that thought came the voice of the Director, who said, “When you use the word disability, people think accommodations, people think favors. Best not to use it.” And after that came the voice of a writing mentor: “I just don’t like the word disabled in this piece. Is there a way to write the piece without using the word?”

What is disability like?

It is like crowding under an umbrella, except your head sticks out, and your hair gets wet, and there are no cabs. Plus, this is somebody else’s umbrella.

Respond to this symbol.

That is where I park my car.

What do you have?

I do not know. The doctors named the condition. They gave it a three–word, nine syllable Latin name. Now I go to other doctors and they say, “What do you have?” and I say the Latin name, and they say, “What?” and I repeat the name, and they say, “How do you spell it?” Also—and I think this is important—the prognosis for the condition reads, “No reported cases have survived past the age of two.” Therefore, I am either dead with the condition. Or I am alive with a different one. Or the medical dictionary is fiction.

What is the condition?

I am a cyborg.

When did you begin calling yourself a cyborg?

Rephrase the question. [End Page 219]

When did you become a cyborg?

2007.

Where?

I cannot say the name of the office. The prosthetist posted a photo of me online, and in the photo I am not wearing any pants. I am wearing the cyborg leg for the first time and without any pants. I am so embarrassed. I do not want you to find the photo online. This is before we knew each other. This is before we knew what we meant to each other.

I have to tell you: when I first saw you, I thought, “She looks like a woman who could be taken advantage of online.”

Yes, that is the problem with having it physical. When it is physical, people make all kinds of assumptions. She needs help. She is lop–sided. She must be so, so sad. I thought of another definition: looked at, done to, and dissed...