Did you know that May 15th – May 19th is Face Equity Week? It was founded by Face Equality International (FEI) to help promote the work of non-governmental organizations, charities, and support organizations that work at the national, regional, or international levels on face equality for people with craniofacial differences. Craniofacial differences can include cleft lip and palate, scars from burn injuries to the face, brachycephaly, birthmarks, facial paralysis, hydrocephalus, vitiligo, and long face syndrome, among others. These differences may be congenital (apparent at birth) or acquired, and some can be episodic. People with craniofacial differences may experience barriers to community participation, including to employment, education, inclusion, and more.
The theme for this year’s Face Equity Week is Counteracting Stigma with the #WeWillNotHide Campaign. People with craniofacial differences face stigma because of how they may look, which may lead to erasure and internalization of the idea that they should be hiding, among other things. The #WeWillNotHide Campaign calls for visibility of visible differences on the big and little screens – not just as villains or vulnerable people; visibility of the community on social media – where people are being censored or abused because social media is not yet a safe space for them; and visibility of real stories about craniofacial differences – not just stereotypical ones.
The NIDILRR community, along with the international research community, conducts research and develop interventions, technology, and other resources to help people with craniofacial differences participate in the communities of their choice. The Model Systems Knowledge Translation Center, in collaboration with the Burn Model System Centers, has published a large collection of resources to support burn survivors including information on understanding and improving body image after burn injury, scar management, psychological distress, and social interactions after burn injury. Many of these resources may be helpful to people with other types of craniofacial differences. In addition, NARIC’s information specialists searched REHABDATA and found more than 250 articles from the NIDILRR and international research communities related to these research and development activities.
Contact NARIC’s information specialists to learn more about craniofacial differences and how to be an ally to people in this community.
