Shortly after Aiden was born this summer, The Chicago Tribune carried a long and detailed article about the support system that surrounded O’Neill — she lives with her mother, has a full-time aide and a trained service dog — as well as the preparations she’d made to welcome the child. Reporter Heidi Stevens wrote:
To prepare for the baby’s birth, she started seeing Kristi Kirschner, a physiatrist at the Rehabilitation Institute of Chicago. Kirschner set Kaney up with weekly visits to physical therapist Despina Kotsapouikis and occupational therapist Anne Armstrong. Their goal: to strengthen Kaney physically and prepare her to care for a baby with only limited use of her arms and no use of her legs.
“Initially we were more in the figure-it-out stage,” said Armstrong. “What are Kaney’s abilities, what equipment will work well with those abilities. We did a lot of simulation with a doll and a lot of mocked-up equipment. Often parents have very different goals in terms of what they want to do with the baby and what goals are realistic.”
Armstrong, who began her occupational therapy career in 1986, has worked with other quadriplegic moms-to-be, as well as quadriplegic and paraplegic dads and grandparents. She has seen double amputees, parents with cerebral palsy and a host of other disabilities.
“We didn’t see as many parents with disabilities even a decade ago,” Armstrong said. “But the taboo is definitely fading. I see a lot of self-advocacy on the part of these patients. They know how to ask for help and use the resources.”
As the pregnancy progressed, Armstrong worked closely with Randy Orians, an assistive technology technician, and engineer Steve Austin to develop adaptive baby gear: cloth diapers with loops on the front and sides for Kaney’s semi-mobile thumbs; a crib on stilts so Kaney’s wheelchair can fit underneath; slings and pillows that allow Kaney to hold, carry and breast-feed the baby from her wheelchair.
As Stevens’s article notes, O’Neill is hardly the first quadriplegic mother seeking to raise a baby. Similarly, Trais is not the first to challenge the competence of a quadriplegic parent in court. In a similar case in California in 1979, the State Supreme Court granted a paralyzed father custody of his two sons, despite a lower court’s ruling that the man could not play ball or go fishing with the boys.
In that ruling the justices wrote, “The essence of parenting is not to be found in the harried rounds of daily carpooling endemic to modern suburban life or even in the doggedly dutiful acts of togetherness committed every weekend by well-meaning fathers and mothers across America. Rather, its essence lies in the ethical, emotional and intellectual guidance the parent gives the child throughout his formative years, and often beyond.”
The objective in any custody case is to determine “the best interests of the child,” but as anyone who has ever entered a divorce court knows, that can be a most subjective measure. As the California court said, the goal is “ethical, emotional and intellectual guidance,” but there are mundane practical concerns on the path to those lofty ends.
Does “best interests” mean physical safety? Financial security? Psychological comfort? Not long ago “best interests” usually meant that custody was awarded to mom. Recently, working mothers have been losing custody fights to stay-at-home fathers who are more familiar with their children’s daily rhythms and more present in their lives. In fact, that is essentially Trais’ argument — that O’Neill’s reliance on others to care for Aiden means she is not really being his mother. Does that mean any parent who hires others to help with their children is also unfit?
I had a chance to discuss the O’Neill case this morning on The Takeaway, where the host, journalist John Hockenberry, is paralyzed from the mid-chest down, the result of a car accident when he was 19. “As a disabled father of five I’m scared that a court would even consider a disability as an issue,” he said. The other guest on the segment was Dr. Corinne Vinopol, president of the Institute for Disability Research and Training, who points out that disabled individuals run the spectrum of good to bad parents, just as able-bodied individuals do.
You can listen to the segment here. Do you think Kaney O’Neill’s condition keeps her from being a good mother to her son? If you were the judge, how would you rule?