Heather at the Neurologist's

This is my daughter's story, although the voice is mine. Heather is an adult whose life is complicated by congenital blindness, cognitive impairment, epilepsy, and expressive aphasia. Typically, communication between Heather and others is a two-way challenge: At each step, everyone involved must perceive, interpret, and confirm understanding. An appointment with Heather's neurologist is used as the setting to illustrate how these connections are made: how Heather communicates her feelings, needs, and intentions and how she makes sense of her world. Anecdotes from Heather's past are included to suggest that following the “lead” of persons with developmental disabilities can make a significant difference in the quality of relationships. Roethke (1953) is right: Along with our intuition, experience, and compassion, we learn by going where we have to go—into their lives, into their unique vocabularies, into their gestures and silences.

Notes

The hydrocephalic shunt value system was one of the first uses of silicone material for medical application. It was originally developed, with the support of the Dow Corning Corporation, in the late 1950s by Drs. F. E. Nulsen and E. P. Spitz. Research, particularly by John Holter, led to improvements and wider use of the system that diverted excess cranial water from the ventricle to the jugular vein.