A Life Beyond Reason by Chris Gabbard

Author:Chris Gabbard
Language: eng
Format: epub
Publisher: Beacon Press

In June 2005, August was suddenly and unexpectedly granted the Medicaid waiver. For many months Ilene had petitioned our elected representatives for help, attempting through letters, emails, and phone calls to find an official to pay heed to our situation. Finally a woman working in the office of State Senator Stephen Wise called back and, with the senator’s help, she pulled strings with Florida’s Agency for Persons with Disabilities and got our son off the wait list. After being granted the waiver, he became eligible for what in Florida is called Consumer Directed Care Plus, or CDC+. With it, we found that our out-of-pocket expenses remained exorbitant but that our financial hemorrhaging stopped. Subsequently, whenever Ilene contacted a state agency representative by phone, it was not uncommon for her to be addressed condescendingly. This was not true of the support coordinators and service providers interacting directly with families like ours at the local level; people who worked with us face-to-face generally were helpful. But the people in Tallahassee, the state capital, treated us differently. To them, Ilene was a mother whose child had a disability that must have stemmed from drug or alcohol abuse or some other bad behavior during pregnancy. Because of this supposed moral failing, she must have done something to cause August to be the way he was. His impairments provided them with an opportunity for mother shaming. To them, these problems disclosed her lack of love, willpower, and maternal dedication. Consequently, when she spoke with them, they always seemed to be on the verge of asking, “Have you stopped smoking crack yet?” Our encounters with the Tallahassee office of the Agency for Persons with Disabilities reminded me of a line from Aleksandr Solzhenitsyn’s One Day in the Life of Ivan Denisovich: “How can you expect a man who is warm to understand one who is cold?”

Then, in April 2009, everything in our family’s domestic arrangement changed. August had grown big and heavy, and Ilene suffered a herniated disc in her neck brought about by lifting him. For several months she was laid up in bed. An articulating titanium disc had to be inserted into her vertebral column at neck level to replace the deteriorated one. Afterward, her doctor told her to not lift any weight beyond fifty pounds. Because August by then weighed more than seventy pounds, I had to assume all of his caregiving—his daily dressing and hygiene and transportation to all doctor and therapy appointments, to his school each morning, and from the after-school facility each afternoon.

After Ilene went back to work full time, she took on the responsibility of making all the phone calls for August’s care and sorting through the mountains of bills. August generated a lot of paperwork from pharmacies, doctors, therapists, and our insurance company. She spent many hours on hold listening to canned music while waiting to speak with a representative of one company or another about problems with a medical bill, a medication error, or an insurance company claim.

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