damn the muse

I had a professor in college who was very fond of stating that everything in life was for the children. Clinton's policies were for the children, just forget about that little blue dress. When we discussed Dante's Inferno, some of the underlying themes would relate back to the children even if some of us in class would end up deeply perturbed. The poet's take on limbo: heathen or unbaptized, your still going to hell.

Still, one theme remained constant in my professor's thinking, and it's prevalent even now. What about the children? Who will protect them from the government, from their parents if they're born with a disability? Should they be protected?

Euthanasia and the case of Emilio Gonzales

For the past few years disability advocates have been weighing in heavily against measures favoring euthanasia. Because many in the disabled community do not have control of their own care, there's an undeniable fear that a family member, case worker, or physician will decide that a disability is so severe that an affected person wouldn't want to live. It's a matter of who has and who doesn't have the control, and when the disabled person doesn't have a natural right to control his/her life, it's downright frightening. Someone else decides who lives or dies. However, every story has an angle, and not everyone in the disability community views euthanasia as the most horrible way to approach death.

Euthanasia for many in the community is the answer. There are disabilities that are so debilitating and terrifying that many would like to die before having to deal with the symptoms. There are no cures for cystic fibrosis, or Lou Gehrig's disease. Though there have been medical breakthroughs, and medications to extend life, reality doesn't go away. Pain doesn't disappear, and it's horrible. Though many may question these types of decisions, euthanasia is what some people choose, unless of course a the third party is involved. When it's a lover, or a sibling, or a child, sometimes the person considering euthanasia can't be dissuaded and won't care. When the third party is a physician or the government everything becomes complicated, or in the case of the United States it's outlawed unless there are special circumstances.

Terri and Emilio

Currently, Texas is dealing with the case of Emilio Gonzales and whether he has the right to live or die. At 16 months doctors think he has Leigh's Disease. In layman's terms it's a disorder that affects the nervous system with symptoms ranging from loss of motor skills to seizures. Most children diagnosed with Leigh's don't live past the age of 6 or 7. Emilio was born blind and deaf, so being diagnosed (unconfirmed) with a terminal disease convinced the physican caring for the baby to take the next step. Extensive medical care stopped and a committee formed under the Texas Advance Directives Act (TADA).

Signed by then Governor Bush, the act temporarily protects a patient's right not to be taken off life support. A medical ethics committee convenes to look over the patient's records, and the patient's guardian is invited to attend. Furthermore, the guardian is given ten days to find a facility that would take over the patient's care. At no time does the hospital or physician stop care until the transfer occurs or the ten days expire.

The act was construed as a way to prevent any situations that might turn into another Terri Schiavo incident. It would help shield doctors and hospitals from liability, and please the Right to Lifers. Yes, when TADA became a law it had the full support of the right to life groups. Maybe because no one wanted to deal with another potential coma patient who "might wake up." But the Futile Care Law, as the TADA is now called, is being used in cases with consequences. Emilio Gonzales could be the next victim under this act.

Or not.

When read in context the act ensures that the patient's best interests are considered, even if it means death. All parties are involved. Emilio's suffering ends, and he won't have to deal with the growing list of symptoms.

On the other hand is the doctor being stingy, negative even by saying that there's no hope? The mother wants more time with her baby. There might even be a cure, even if it's slightly unrealistic. She's the one who is supposed to make the right choices for her child, isn't she?

Who decides for the children?