His body had been frozen into a stiff position because a nursing home left him on a prone cart, which he wheeled himself around before finally getting a motorized wheelchair. He had no feeling below the shoulder area. People would try to look away from him, trying not to see his ramrod stiff body in his modified wheelchair. You could see it in the faces of the people. Someone that disabled should have died. Should have been allowed to die.

Mark always said he "wanted to get what was his." Society treated disabled people with disrespect, he said. Every inaccessible store or public place was a slap in the face. Where ramps could have easily been built, there were none. Denial of your person. Wrap it up with dollar signs and a defensiveness wrapped around people like armor. How dare you step out of place? You saw it. Many people had no problem voicing it. "You should be in a nursing home. You should not be out here." Hearts harden so quickly. It is the defense of the guilty.

Pity has always been a kissing cousin of disgust. How many times have you wanted to turn your eyes away and not see something that you pitied? The homeless person on the street, a disabled person in a wheelchair? You don't want to see them. You can look past them. They are made of glass--they are a looking glass. What if that was you? What would you do?

At the funeral, people sat wondering at the pictures of Mark. He traveled around the country and had attended many ADAPT actions, both locally and nationally. Here he was in front of the White House, the Pennsylvania State Capital, Congress, City Hall.

The minister at the funeral marveled. They had grown up together as boys in North Philadelphia. "There was Mark all over the city in his wheelchair." Where was he going? What was he doing? He would visit people in the hospital. See people when they were sick at home. He would be all over. "I would have given up," mused the minister.

Right now, we are watching a woman die on TV. The greatest wonder of the modern age, euthanasia -- live in your home. We watch, some of us praying, some of us disinterested. Should have been done years ago.

Somehow in our age of great technological wonders, we have become so sure of ourselves. We know everything. We know she feels nothing. We know she's a vegetable -- we should let her die of dehydration, slowly. All doctors are infallible and so are we. The Golden Age of Self-Righteous Assertions has come.

I have seen people considered in "vegetative states." As a friend of mine who worked in hospitals said, "The doctors would practice on them and do procedures with no anesthesia." As he cleaned them up and tended to their needs, tears would flow down their faces after the doctors were done. They would sometimes smile, laugh or look. Because they couldn't speak anymore, couldn't reach through the broken ganglia of nerves to be what we would consider a life worthy of living, because they had to be taken care of and fed, they were empty vessels.

In the same breath, progressives are opposed to capital punishment. I cringe. Isn't starving another human being to death -- watching her dehydrate and die because she doesn't talk or consume material goods -- isn't that cruel and unusual?

"She doesn't feel anything." How sure are you of that? How sure is anyone? Do we assume it simply because she can't walk, talk, feed herself or hold a conversation with us?

In the medieval period, doctors bled patients with cuts inflicted by razors to let "ill humors" out of the body. Ptolemaic medicine was the greatest medical science of the day, practiced by barbers and doctors. Leeches, bleedings, enemas and mercury were used to treat ills. Now we are worrying about how mercury in the environment may cause autism.

In every era, we are convinced of our knowledge. We never say, "Well, we really aren't entirely sure."

When my lover, Erik, had a series of strokes in 2003, a neurologist told me, "We don't really know what will come back, what won't; or how long it will take. It could take a year, 2 years, 5 years." The doctor told me that the brain is the organ we know the least about. All of its functions are unknown to us. We know a lot, but not really. "About 85 percent we don't know."

No one had an easy answer.

Erik has been improving steadily.

While Terri Schiavo dies, politicians and Mel Gibson have mobilized, promising to help. On both sides of the political divide, people have used her to grandstand.

Somewhere in the midst lies Terri. I watched video footage of her mother moving hair off of her face and she seemed to smile. Does she feel it? Does she know? Is this what she wants now?

It is important to have a living will. You should discuss with a person, your lover, spouse, friend or family member about what you want. What limits are considered viable to you and whether or not that person is comfortable and willing to perform that duty to you. We should decide for ourselves while we have the opportunity. In Terri's case, it is the word of her husband versus the word of her father and mother.

I hate that this battle has left me on the same side as anti-abortionists, Christian extremists and the Republican party. A woman should be able to make decisions her own body. End of story. I don't know or believe that there is a god. (If there is, we are far from being in its image.) I am tired of seeing the Bible and the Cross becoming weapons against anyone who doesn't conform to the Party Line.

I hate the Republicans and their de-humanizing stance of pitting poor against poor. George Bush is a hypocrite. He would cut the Medicaid money that Terri Shaivo has depended on and that other disabled people need to remain in their own homes, in the communities rather than die of neglect in a nursing home. Even PA Governor Ed Rendell is planning immense cuts to Medicaid that will limit people with disabilities to $5,000. a year for durable medical equipment.

I am tired of geriatric actor/directors who refuse to make their own business interests accessible to disabled people and then film a movie where a disabled woman is killed because her life is useless. And fuck you to Hollywood and the Academy Awards for lauding the casual genocide of disabled people while giving teary eyed tributes to Christopher Reeve doing telethons and charity events.

Then I remember Mark. He lived his life, no matter what. He would smile and say, "Don't let it get to you."

I continue to fight for him, for Terri, for myself, for Erik and everyone else. We have a right to life. We have a right to live even when people think we shouldn't be alive. We have the right to live as we choose. We also have the right to die as we choose. We owe each other a modicum of respect and dignity. We shouldn't be spectators to a woman being killed slowly.

Finally, if the image of the Crucified Jesus means anything to me, it means this: We kill that which we do not understand. Jesus is anything that we fear and hate. We nail it to the cross of our hubris and our convictions. We are the bloodthirsty mob that nails it in place. There is blood all over our hands. The blood of the innocent. The blood of the misunderstood.

Is there really redemption?

Posted March 26, 2005

Jimmi Shrode is a member of Philadelphia ADAPT. Read his last article for Ragged Edge, Dr. Death on trial in Philadelphia.

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