Clinicians, Advocates and Researchers Join to Bring Awareness to Impact of Face Inequality
Over 100 million people worldwide currently have facial differences from injury, genetic conditions, birth and more. However, in many countries existing laws are failing to protect them from discrimination and human rights violation. To bring awareness to this important issue May 17th-24th marks the fourth annual International Face Equality Week with the theme "Face Equality Is a Human Right." The Boston-Harvard Burn Model System (BHBIMS) joins with this effort to highlight the impact of these disparities.
“As clinicians we have the tools to help heal the physical impacts of trauma and birth related conditions affecting the faces of our patients, however we know that is just the first step in the recovery journey. For the people we serve we know that once they return to their lives there are far too many real and perceived barriers put before them to achieve their goals such as return to work or access to opportunities. We add our voice to this important awareness effort for International Face Equality Week and continue to commit in our work at the Boston-Harvard Burn Injury Model system to advance advocacy for these populations,” said Jeffrey Schneider, MD, Director of the Boston-Harvard Burn Injury Model System and Medical Director of the Burn and Trauma Rehabilitation Program at Spaulding.
Legal recognition of disfigurement is currently limited to disability laws. Research, and case-law indicates that existing disability-specific laws are not adequate to address the facial and visible difference community on several levels. This is largely due to facial differences not being universally regarded as a disability and because the barriers experienced by someone with a facial difference are largely attitudinal in society rather than physical.
Among the efforts by the Boston-Harvard Burn Model System to study the social impacts upon burn survivors from their injuries is the Life Impact Burn Recovery Evaluation (LIBRE), which is a computer adaptive test that assesses social participation following burn injury in six domains. The LIBRE Profile provides data-driven evidence on social recovery and reintegration into the community. An individual burn survivor’s social needs can be understood by benchmarking their trends in social participation outcomes to a referenced population of burn survivors with similar demographic and injury characteristics.
A goal from the study is to create a tool that can help clinicians create more focused interventions that can address the effects visual differences can have on one’s mental and social health long-term. “Bringing awareness on these efforts could possibly decrease the mental health effects from stigmatism for burn survivors and those with visual differences. We hope others join us in advancing care and research for this population,” concluded Dr. Schneider.
The BHBIMS is a collaboration of Spaulding Rehabilitation Hospital, Massachusetts General Hospital, Brigham and Women’s Hospital, Harvard Medical School, and the Boston University School of Public Health. Learn more >