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WHO: Not Dead Yet, ADAPT and over 20 national and state disability rights organizations

WHAT: Press conference to announce filing of an Amici Curiae (friends of the Court) brief in the case of 'Sidney Ainsley Miller et al v. HCA, Inc. et al.'

WHEN: March 21st at 1pm

WHERE: North side of the Texas Capitol by the children's statues near the Supreme Court Building - Austin, Texas

WHY: To protest the discrimination against people with disabilities in this historic "Wrongful Life" case which will be heard before the Texas Supreme Court on April 3rd in Waco, Texas.

The amici curiae brief being filed March 21 in the Miller v. HCA case lays out the position that all children regardless of their mental and/or physical disabilities have the right to grow up and live in our Texas communities and that there is no such thing as "wrongful life" after a child is born alive. It states that medical treatment should not be withheld from a premature newborn at birth SOLELY because the infant may have or acquire disabilities.

Colleen Horton, disability rights advocate, and a parent of a disabled child said, "There are literally hundreds of thousands of children with disabilities in Texas. The decision of the Texas Supreme Court in the Sidney Miller case will not simply be a reflection on Sidney's life, it will reveal how we value the lives of all of our children with disabilities. Don't ever try to tell me that my daughter's life is 'wrong'".

"The public and the court must realize that this case is about discrimination based on disability. It is not about medical malpractice, or the common law of negligence, or about advance directives, or about the validity of consent. This case is about the assessment of quality of life viewed through a societal prism that devalues the worth of children and adults with disabilities", said Bob Kafka, ADAPT and Not Dead Yet Organizer.

The amici curiae brief will be filed at the Texas Supreme Court Building following the press conference.

If your group would like to join the 20 others already named on the Amicus, please contact Bob Kafka at 512/442-0252 or 512/431-4085, by Tuesday afternoon, March 19.

Following is an Op-Ed by Colleen Horton, Children's Policy Specialist at the University of Texas, and, more importantly, a mom whose daughter is the same age as Sidney Miller

NO SUCH THING AS "WRONGFUL LIFE"

"WRONGFUL LIFE."
If every there was an oxymoron, this has to be it. On April 3rd, the Texas Supreme Court will review a Texas Appeals Court decision (Sidney Ainsley Miller vs. HCA - No. 01-0079) involving a claim that the life of an eleven-year-old girl named Sidney Miller is "wrong." The original complaint alleges that the hospital that cared for Sidney when she was born and kept her alive should not have followed accepted medical protocol based on the fact that Sidney had the potential for developing disabilities.

What is so appalling about this is that "wrongful" is based on the fact that Sidney has disabilities. How this translates is that children with disabilities, including my eleven-year-old daughter, aren't worth saving, aren't worth what children without disabilities are worth. How can this be? What has happened to us as a society that we are actually attempting to define the value of a child's life, and by that definition decide whether a child is allowed to live or die. When did we become so arrogant that the right of a child to receive standard medical care, the right of a child to live, is based on the possibility that he or she may have a disability and the challenges those disabilities may present.

Sorry folks, but life isn't about perfectionism and it isn't about convenience. The staff at the hospital that cared for Sidney when she was born did not take "extraordinary measures" to save her life. They simply provided her the care that they would provide any premature infant. They didn't discriminate based on a potential for disability.

Sidney was born alive and viable. It wasn't until almost two weeks after her birth that she had a brain hemorrhage that caused her disabilities. There is no claim of malpractice, no claim of negligence- the hospital has been sued for providing the initial care that kept Sidney alive. If the Appeals Court decision to reverse the District Court award of almost $50 million to the parents for "wrongful life" is not upheld, hospitals will be in a very precarious position. If they provide care according to normally accepted standards, they risk "wrongful life" suits. If they fail to respond and do not provide treatment, they risk malpractice. They simply can't win. Nor do their patients - children with disabilities.

There's much more to this, however, than the legal battle and the multi-million dollar award. It's about what we value and respect. It's about the slippery slope that this would create. It's about allowing arbitrary decisions about which child gets to live and which child will die. What kind of society have we become when we begin measuring the value of the life of a child by what could happen in the future?

Yes, raising a child with disabilities is very different and often more challenging and more costly than caring for a child without disabilities. The value of my daughter's life, however, should in no way be diminished because of the challenges her disabilities present. The gifts she brings to this world should be treasured and her life should be celebrated. There are literally hundreds of thousands of children with disabilities in Texas. The decision of the Texas Supreme Court will not simply be a reflection on Sidney's life, it will reveal how we value the lives of all of our children with disabilities. Don't ever try to tell me that my daughter's life is "wrong."

Colleen Horton
Children's Policy Specialist
Texas Center for Disability Studies
University of Texas at Austin

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