Wisconsin State Journal
by Linda Rowley
Like millions of families around the country, my son and I paid close attention to the evolving Terri Schiavo story. Our interest went beyond morbid fascination; we had a personal stake in the political maneuvering in Florida and Washington.
Our stake involves Medicaid, the state/federal health insurance program that is in many ways the heart whose beat keeps people like my son alive, healthy, and at home. We find it more than ironic that the very policy-makers who wanted to save the life of Terri Schiavo are proposing massive cuts in Medicaid, which helps millions of people with disabilities survive.
In 1985, my son Mitch was born with spina bifida, the most complex birth defect compatible with life. The defect can affect all the major body systems, and along the spectrum of mild to severe,
Mitch fell off the edge. Though he was not expected to live long, we were fortunate to have found a hospital with doctors who believed he deserved a chance to live.
Auspiciously and coincidentally, President Reagan had signed the Baby Doe provisions of the Child Abuse Act of 1984 into law just four months earlier. This law extended legal protection to infants born with handicapping conditions, ensuring that those infants would not be denied life-saving treatment because of their disability.
Mitch’s health is balanced on the edge of a knife. I sometimes forget how fragile he is, until one little thing – a pressure sore or a chest cold – triggers a cascade of events that leave him fighting for his life.
He is not alone in this. All over the United States there are thousands of young people who have medically complex disabilities and are coming of age. They are the first generation of individuals with severe disabilities to survive to adulthood.
These are the kids who, had they been born five years earlier, would not have survived infancy. Their parents have learned to operate complicated medical equipment and provide skilled nursing care on a daily basis. From IV therapy to ventilators, from feeding tubes and pumps to pulmonary treatments, these children undergo daily treatments and procedures at home that weren’t even done routinely in hospitals 10 years ago.
And while we learned how to care for our children, we also learned much from them. Walking, it turns out, is not everything. And wheelchairs, rather than being an instrument of confinement, are a means to freedom.
We saw, through our children’s example, that the capacity to experience a quality-of-life resides in the heart and mind, not the physical body. And we learned that our children share the same hopes and dreams that all children have: to attend their neighborhood school, make friends, grow up, fall in love, find a job, make a home. In short, a chance to live a regular life.
Key to that opportunity to live a full life for Mitch and his peers around the country is Medicaid, the critical lifeline for people with disabilities. The current efforts in Congress to cut Medicaid raise the following questions for me. Because Mitch is no longer a helpless infant protected by the Baby Doe Act, does he no longer have any protections? Because he, his doctors, therapists, teachers, friends and family have worked for 20 years to keep him alive and thriving, does he not deserve to continue to live, and if so, will Medicaid still be there to assure his medical care?
For Congress and the president, Terry Schiavo became the symbol of their respect for life. My son, and the millions who could be affected by these proposed cuts, are the reality.
Rowley lives in Mineral Point with Mitch, who graduated from high school in June 2004.