In March 2007, the Texas case of Emilio Gonzales came to FRIDA’s attention. Emilio, then about 17 months old, had Leigh’s disease. He was deaf, blind, and it was believed that the disease was progressively breaking down his nervous system. On December 28, 2006, he was placed on a ventilator and feeding tube when he could not breathe on his own.

According to the Texas futile care law, his doctors could decide when there was no longer any point in caring for Emilio and once serving notice to his mother, could cut off his ventilator and feeding tube in ten days. The process was put in motion in March, when doctors felt there was nothing they could do to help him. With the support of advocates, his mother was able to get a temporary restraining order against the cutoff in order to buy time to find another hospital to care for him.

Advocacy groups and individuals then carried on one of the largest coordinated efforts to save a disabled person’s life since the death of Terri Schiavo in March 2005. FRIDA launched a grassroots effort to get Texas Governor Perry to issue an order countermanding the futile care law. FRIDA also worked to educate the national disability community about the case. Disability rights and pro life groups in Texas worked to continue to file temporary restraining orders and to find a new hospital for Emilio. Over 30 hospitals were contacted; none would take him. Disability rights advocates such as ADAPT of Texas, in coordination with Not Dead Yet, also sought to push changes to the futile care law in Texas through the Texas legislature.

A succession of temporary restraining orders kept Emilio alive without medical murder until May 20, when he died naturally in his mother’s arms at the age of 19 months. While mourning Emilio’s passing, advocates declared war on the futile care laws in Texas and Virginia, the only two states with such deadlines.

The Texas futile care law was born of the attempt by disability rights activists to fight back against the way things used to work in Texas. About six or seven years ago, doctors were able to simply pull the plug on patients with no warning to the family. The ten-day law was then passed by former Governor Bush to prevent those abuses. However, ten days is clearly not enough.

Emilio’s case was of particular concern to feminist disability rights activists for several reasons, beyond the overarching concern that the futile care law enabled doctors to devalue the life of a person with a disability.

Emilio’s mother, Catarina Gonzales, was only 23 years old and a single mom. She had stated that she wanted her son to live his own life without someone pulling the plug on him. She was accepting of his disabilities. She was also fighting not to have her only child’s life taken away because she had been told she would not be able to have another child.

As a Latina living in Texas, a woman, a single mom, a young adult and a person receiving Medicaid for her disabled son, could the systematic deck have possibly been biased against Catarina Gonzales? Is it possible that some of these factors might have affected Emilio’s doctors’ decision that his life was no longer worth living, and the refusal of over 30 other hospitals to accept Emilio?

We also wonder why, if Emilio was on a ventilator and a feeding tube, he was not allowed to go home on those systems. Why did he have to stay in the hospital, which is clearly not a home? Thousands of people with disabilities live on ventilators and feeding tubes. The empowered ones are not homebound and consider their breathing and feeding supports just part of life.

This case furthermore shows that the more things change, the more they stay the same. Emilio Gonzales strongly recalls, for those of us in the disability community, the cases of Baby Allen Bollinger in 1915 and Baby Doe in 1982. Baby Allen was born in Chicago with serious physical disabilities. On the advice of his parents’ doctor, he was left to starve to death and died when he was six days old. Baby Doe was born in Bloomington, Indiana with Down Syndrome. He had an esophageal condition which, without surgery, meant that he couldn’t swallow food and would starve. His parents opted not to have him undergo the corrective surgery and let him die. This “starvation option” is generally referred to as a form of medical treatment and not as murder.

Finally, Emilio’s case highlights a hot topic among disabled feminists regarding pro-choice and pro-life groups. Texas Right to Life spent a lot of energy supporting Emilio and his mother, with the perspective that everyone has a right to life. However, many disabled feminists are pro-choice, with the perspective that you can be pro-choice while still being informed on the idea that having a disabled kid is simply part of human diversity, rather than the end of the world. Disability should not be the deciding factor in considering an abortion. Pro-choice feminists with disabilities supported Emilio’s fight because he was a person with a disability, one of us, and our community knows full well how simple it is to dismiss someone’s life simply because they have a disability.

While it may appear on the surface that pro-life groups and feminist disability activists occasionally find common ground, in reality we aren’t actually sharing common ground. Instead, we really are seeing the situation from two different perspectives. The tension between these perspectives continues to remain a hot topic of discussion in the disability rights movement and in FRIDA itself.

Emilio’s legacy in our community has been to get us to examine and advocate on these issues, hopefully so that families do not have to face Emilio’s situation ever again. We salute his mother’s tenacity and the hard fight fought against the Texas futile care law.

This entry was posted on Sunday, November 25th, 2007 at 1:50 pm and is filed under Old Campaigns. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.