Saturday, September 12, 2009

Disability, Suffering and The Illogic of Slippery Slopes.

Disabled groups like Not Dead Yet have been some of the most vocal opponents to the Death with Dignity movement, contending that as one of the most vulnerable groups in society, they will be pushed into hastening their own deaths because they are seen as living lives with less dignity, functionality, and joy than others. Though Death with Dignity, as it exists in Oregon and Washington, is only permitted in the mentally sound, terminally ill and must be self-administered, the disabled fear that their "burden" to society will place them on what they see as the slippery slope diminishment of respect for life demonstrated by the legalization of abortion and aid in dying.

Mark Pickup, a triplegic due to multiple sclerosis and an anti-choice in dying advocate, was a close friend and ally of Robert and Mary Schindler, Terri Schiavo's parents, themselves staunch Catholics and activists against terminating life support of their persistent vegetative state daughter and other "disabled" patients, of which there are some 15,000 in the US at any given time. Pickup writes a farewell on his blog to Robert Schindler, who died of heart failure on August 29th.

While doctors may have ascribed Schindler's death to cardiac arrest, he writes, "those of us who knew Bob know he really died of a broken heart" from not being able to prevent the "murder" of his daughter at the hands of the state and her husband, Michael Schiavo, who "wanted her dead."

Terri did not need to die. Michael had moved on with his life, hooked up with a new woman, and even started a family with her. He was obviously in a conflict of interest regarding Terri Schiavo’s best interests.

The Schindlers wanted to take their daughter home, saying that their desire to love her and care for her demonstrated their superior love and deserved custody. Michael, who contested that Terri would not have wanted to live in a persistent vegetative state, after 15 years won the right to remove feeding and hydration tubes from his wife. She died 13 days later, on March 31, 2005.

I know I'm hashing old ground here - I've written about Terri Schiavo elsewhere - but as I think more about suffering and the role it plays in this argument of "slippery slope," quality of life, responsibility-to-live-despite-all-other-factors that anti-choice in dying groups pose, I found Pickup's post helpful. He writes:

Terri Schiavo had a serious disability but she was not dying. She relied on a feeding tube but did not need a respirator or other means of artificial life support. Terri Schiavo had a normal life expectancy but her husband maintained she would not want to live in such a state of disability. There was no written document from Terri saying this, nor did she complete a living will laying out her wishes. Granted, she probably did not want to live with a disability. Nobody does. So what! I do not want to live with my serious disability but that does not mean I’m better off dead. Millions of people with severe disabilities live happy and vital lives.

All mental and physical afflictions, whether degenerative, terminal, or however extreme, seem to fall into Pickup's one category: disabled. Though there was no chance for Terri to ever emerge from her persistent vegetative state, her life was sacred to her family. We could say that Terri's life could not matter to her in her diminished mental state but that it mattered to her family.

Pickup argues for the sanctity of all lives even as he states that some disabled live happily and vitally and that Schiavo never recorded her wishes to be removed from life support. Quality of life and personal choice are, like Palin's statement that she chose to have a Down Syndrom child though she doesn't believe in choice, used to garner praise or prop up the hope for a miracle recovery. Ultimately, this narrative concludes that it's not the vitality or happiness that makes a life worth living, not the autonomy of humans and the choice to live, but the suffering that one undergoes. That Schindler suffered, that Pickup suffers, that Michael Schiavo loved again and "hooked up" with another woman to avoid suffering; these acceptances or denials of suffering are used to determine one's value. If suffering has a purpose given by God, trying to escape suffering is gonna get you in trouble.

Pickup's blog subtitle is, "Reflections on disability, Christian meaning and purpose in suffering. Christian subjects." As Christian subjects - all of us, regardless of faith - we are given suffering from God and according to his laws must bear that suffering. Only he can end it or end our lives. In other words, as a good parent/lover, God knows what is best for us and gives us suffering if we deserve it. And he gives us no more than we can bear. Church tenets and a judicious patriarchy interpret God's will and govern us accordingly.

The "martyrdom" of Schiavo is retold by Pickup: "Christians and other people of good will gathered outside the hospice to protest the torture and murder of an innocent and defenceless woman, unable to speak or fight for herself." Though doctors concur that Schiavo was unable to sense pain, her family and activists contend that she suffered miserably from dehydration and hunger until her death at the hands of the "culture of death." Her physical suffering - and that of her family and activists - is vital to her martyrdom (and theirs). Suffering is proof of the rightness and worthiness of their cause.

Interspursed with images of Robert Schindler and the Statue of Liberty weeping, Pickup's post reminds us of the role suffering plays in redemption and personal autonomy. Their fight against Death with Dignity (in spite of the fact that it requires self-administering) is a fight for suffering, for what they call the "natural" law of God and His right to cut the thread.

Labels: , ,


Post a Comment

Subscribe to Post Comments [Atom]

<< Home