Mum's the Word



Aphasia, the devastating impairment of communication frequently resulting from stroke and related disorders, has been exhaustively researched from neurological, neurolinguistic, and clinical perspectives. Moreover, group and individual treatment approaches have been investigated and reported at countless ASHA conventions and international conferences. Additionally, the role of patient/family education and support has been documented as being an essential component in the process of recovery.

For fourteen years, the Aphasia Community Group of Boston has addressed the issues of patient/family support and education. Founded in 1990 by a group of dedicated persons with aphasia, family members, and speech-language pathologists, and supported by an internationally recognized rehabilitation center, the Aphasia Community Group (ACG) has provided a voice for those silenced by aphasia and a safe, supportive environment in which to share information and coping strategies.

The group comprises a wide spectrum of types and degrees of aphasia. We have found that this variety actually promotes participation. Less impaired aphasics encourage and inspire others. And often, those who are more severely affected participate more actively than some of the lesser affected and also serve to inspire and encourage.

Various forms of artistic expression--art, music, photography, dance--have proven to be most effective in stimulating participation and in reaching out to the most globally impaired.

Nonetheless, despite exhaustive investigation of aphasia and an international network of educational and support programs, it remains a largely mysterious and misunderstood disorder among the general public, often mistaken for such disorders as hearing impairment, mental retardation, and psychiatric illness.

In 1997, a multi-media artist, in collaboration with our group, undertook a project to inspire the public to understand aphasia. Ellen Driscoll is an artist whose recent projects include "As Above, So Below", a commission of 21 permanent artworks relating cosmological theories about the sky from different parts of the world for New York's Grand Central Terminal, and "Passionate Attitudes", a camera obscura installation exploring the closed circuit of projections which pass between doctor and patient in medical relationships.

Ms. Driscoll approached the group with a proposal to construct individual representations of aphasia through visual images. In dedicating this project to her father, a stroke survivor, she worked with eleven persons with aphasia, individually, over a series of home visits. A portrait of the self, both before and after the injury, was constructed. In between visits, the artist composed drawings and images generated during the sessions on computer and brought them back to subsequent sessions for revision. A short, startlingly poetic text, generated through simple word games accompanied each image. The images were then fabricated as two-sided banners, reflecting the sense of fragmentation and dislocation experienced by the individual, and installed throughout the metropolitan Boston area for several months in public parks, plazas, and at special community events.

This collaborative project has given those persons with aphasia an opportunity to express themselves through poetic imagery. And it serves to enlighten the public about a condition which often remains misunderstood and shrouded in mystery