This is Tammy, my thirty-eight-year-old daughter. She still lives with me. So does her 16-year-old son, Paul.   She has a disability which prevents her from entering the work force. Parents of adult disabled children have a greater reason than most to fear their own death.  What will happen to my child?  How can people like me, a retired teacher, plan for those twenty or forty years between our own death and the death of that adult child?  What if the livelihood that kept our families afloat for all our working years provides for one lifetime, but not two?

       At a time when income inequality has risen to obscene levels, when it is proposed that the children of the 1% can inherit billions with no taxation, I have a word to say about the budget and its funding mechanism, taxes.

      Money is the way we transform our morality into practice. Before any budget line and any tax reform is enacted, the following question should be answered: does this item provide an appreciable benefit the individuals in our community?

      I took Tammy from the foster care system in 1984.  She was a profoundly speech impaired and disturbed little five-year-old.  I admit to hubris. I thought I could bring her around, that I could stimulate her brain and remediate her deficits so that one day she would go to college, get a job and become a productive member of society. But the damage from being shunted from one foster home to the next was too deeply embedded to be repaired.  Five times as a tiny tot Tammy thought she was on terra firma only to find she was on a sinking raft.  For a long time, I was the Queen of Denial. Over time I had to face the hard truth that little girls are not lumps of clay.  

      So now she is a woman who eloped at the age of 20 with a homeless boy, had a baby, and needed help. Two sources came to her aid: the government and me.  Her diagnosis of PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), an autism spectrum disability, made it possible for her to get SSI and Medicaid.  I took an early retirement from Friends Seminary, where I had taught for 34 years, and we all moved to Florida, where I could afford to buy a house.  

I’m leaving out the part about how I woke up and she was gone and how I went out looking for her in my brother’s old Toyota, going the wrong way on Second Avenue, blinded by tears, horns blaring all around me, and finally a siren and a nice police officer who explained that disabled or not, she was an adult. 

      I’m jumping to the trip to Florida, to a new life.  Tammy, her husband, two-year-old Paul and I headed south on I-95.    Their cat and my cat, occupying two carriers stacked on the passenger seat, meowed for a thousand miles. Paul, ensconced in his car seat between his parent called “Dooooeee yon!” from the back seat.  Mile after mile of  “Dooooee yon!”   as he played with his little plastic Buzz Lightyear. When we finally cleared the tunnel, the tricky lane changes, and the gnarled traffic of the northeast, it occurred to me to ask, “Does anyone know what doooeee yon means?”  His parents knew.  With perfect synchronicity, they sang out, “To infinity and beyond!”

      The marriage ended, but improbably, during the summer of my seventieth year, I got married for the first time to a retired psychology professor, Don.

      But revenons à nos moutons (sorry, I was a French teacher.) Here is the story as pertains to the budget.  Every month Tammy gets $734 from SSI and $89 in food stamps.  The yearly income is $9876.  She and Paul also get Medicaid.  I am grateful to the government but oh so worried.  If she inherits our house, her income will not cover the taxe and insurance, never mind the electric bills, water bills, and lawn mowing bills.  I guess Wi-Fi and phones and cable TV are luxuries.  Anyway, there would be no possibility of her paying for them.  So our plan is to keep body and soul together for a few more years (I eat veggies, I take walks), sell the house as soon as Paul finishes high school and get her a small apartment. It will be tight.  She will be poor.  I will pass the baton to Paul.  He loves his mother.  He knows this is coming. Don and I will go to a senior rental where they serve meals.

      I wonder how the president and Congress could even think of a budget that would reduce her income further. I take responsibility for my part. I get upset when I see a kid with Down syndrome working at Lowe’s or the autistic kid delivering the mail in my husband’s old job.  I take it personally.  Those parents were better advocates for their children than I was for Tammy. She would be good at bagging groceries at Publix, but I couldn’t make it happen.  Not even that. I put it on me that someday she will be a crotchety old lady who can’t pay her electric bill.  

      But I put it on the government too. When humans first came together in community, it was because together we can help each other, because it is in us to appreciate the benefits of mutual support.  For me, morality and mortality are closely related.  I think of Unamuno’s The Tragic Sense of Life.  I’m paraphrasing from 46 years ago in graduate school, but his thought goes something like this.  When as children we learned that someday we would die, we took pity on ourselves.  Poor me.  I’m going to die.  But then we saw that everyone else was going to die too.  Poor everybody.  As cumbersome and as unwieldy as our government is, it is composed of poor everybody. When it allocates resources, it should remember that. 

      If the status quo continues, Tammy and other disabled adults will have little enough.  She will have her $9875 a year and a woman of her age whose parents are wealthy, a woman who could actually get a job bagging groceries, can inherit five million dollars without paying tax.  That’s now.  With the proposed elimination of the estate tax she could get billions.  How can this not make people shudder?

      More and more we are usurping the reign of natural selection and taking charge of our own evolution.  We monkey around with genes.  We uncover the little pin prick that makes us love sweets to our detriment.  We tinker with the legos of agriculture.  Natural selection has given us an adaptation to nurture which permits our helpless infants to make it through the long journey to fledging. At the opposite pole is another adaptation: greed. We, citizens and leaders, must maneuver out minds toward compassion and away from greed, not just for Tammy’s sake, but for the sake of poor everybody.  We all need a safe infrastructure, reduction of greenhouse gases, scientific research, and the arts.  We need minds driven by empathy to design our budget.   Suppress greed; feed compassion.  Evolve!