b'ing stigma-free

Red body with bandaidMarch is designated “Brain Injury Awareness Month.”  It certainly would seem that the public is more aware of brain injury, given famous cases that have made media history: in 2013 NFL player Ryan Freel committed suicide, diagnosed on autopsy with chronic traumatic encephalopathy (CTE) that was thought to be caused by multiple brain injuries; just before the 2011 Christmas holidays congresswoman Gabrielle Giffords was felled by a gunshot wound to the head and subsequently went public with her recovery and rehabilitation; in 2009 Natasha Richardson died following a “mild” brain injury suffered on the ski slopes; in January 2006, Bob Woodruff, recently appointed ABC news anchor, was hit by a roadside bomb in Iraq, dramatically changing his and his family’s lives in an instant.

Yet, these names are unique only by their familiarity. In fact, 2.4 million Americans sustain a brain injury each year. Traumatic causes include motor vehicle accidents, sports injuries, falls, assaults, and wounds by gunshot or other penetrating objects. Injury severity varies from an impact leaving the victim in either a vegetative or minimally conscious state without purposeful response, to relatively mild “concussion” that as a first incident is expected to resolve within 2-3 weeks leaving no residual traces. Yet, what do we think of individuals with residual brain injury effects?  Are they different than us, or like us – with a difference?

The stigma associated with brain injury varies, reflecting human bias. We want to “see” evidence of injury in order to believe it.  Yet, when we see it, do we relate to the person with compassion and acceptance?  For individuals with severe brain injury, evidence of injury is all too apparent. The head or face is disfigured by traces of stiches, a jagged scalp wound where surgery took place, an indentation in the skull where the bone was fractured and removed.  How many unblinking stares do these individuals endure because they look different? They have not asked you to look at them with curiosity, pity, or disdain. Their speech may be slurred; or their walking may be off-balance. They have not asked to be ridiculed by others or suspected of intoxication.

For individuals with mild brain injury (up to 80% of total injuries), the societal stigma is ironically different. The predominant effects of mild brain injury are cognitive and behavioral, rather than physical. These individuals may have difficulties with paying attention, remembering what was said to them, or knowing what to do or say in a social situation. For them, the “hidden” disability is the stigma, as they are judged to be stupid or inept without an understanding of the underlying cause.

As with all individuals who are different, those with brain injury appear in judgment before their peers, with resulting stigma that may render them somehow “less.” They are often isolated, lonely, and sad. It is important that others learn more about the person with the brain injury in the context of work, school, play, leisure, and intimacy so that the individual can maintain an active role in society, and ultimately, a sense of dignity.

Donna Langenbahn, PhD
Rusk Rehabilitation at NYU Langone Medical Center
New York, NY

LangenbahnDonna Langenbahn is Clinical Associate Professor of Rehabilitation Medicine at NYU School of Medicine and Associate Director of Psychology – Outpatient Services at Rusk Rehabilitation, NYU Langone Medical Center, New York, NY.  Her work comprises administrative, clinical, research, and teaching responsibilities.  Her clinical and research interests have included assessment, cognitive rehabilitation, and psychotherapy with individuals with acquired brain injury.  From 1991 through 2012, she was part of an NIH-funded Rusk research team exploring the treatment of deficits in problem-solving following acquired brain injury.  Along with other responsibilities, she currently conducts an intern seminar on cognitive rehabilitation and manages the medical center’s neuropsychological assessment and treatment team providing services to adults with concussion.  She has published and presented in national and international venues, and is a co-author of the Cognitive Rehabilitation Manual: Translating Evidence-Based Recommendations into Practice. 


 

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