POST 10 — What Happens When We Stop Trying to Make the Person Fit?
WHEN COMPLEXITY MEETS THE STANDARDIZED BOX Educational Series — Posts 6–10 POST 10 — What Happens When We Stop Trying to Make the Person Fit? System design | Individualized care | Human dignity For more than two decades, I’ve watched people try to fit my son, Alex, into categories that cannot adequately describe him. A spinal cord injury category. A ventilator-dependent category. A quadriplegia category. A developmental disability assessment. A nursing task list. Each describes something about Alex. None describes everything. Alex sustained injuries involving the cervicomedullary junction, brainstem, and upper cervical spinal cord. He has profound physical dependence. He is cognitively intact and directs his own care. He uses a diaphragm pacer as his primary respiratory support. He has unusual autonomic responses that require individualized understanding. And he has lived successfully in the community for more than two decades. But when systems encounter someone whos...
