Burn Survivors of New England Celebrates Face Equality Week
May 17th – 24th 2021
Many of the barriers to equitable access to work, education, and fulfillment for someone with a facial difference are largely due to a lack of public understanding, along with limiting societal attitudes, and pervasive stigma. Join Phyllida Swift, Chief Executive Officer of Face Equality International and Diana Tenney, President Burn Survivors of New England as they discuss issues and solutions concerning physical and facial differences.
to see a video interview of Phyllida and Diana.
Note the lovely comment from someone from an Australian facial paralysis support group:
This was so enlightening and dare I say - inspirational. I know there are times when I think - what’s the point of doing what I’m doing as a facial differences advocate. Then I listen to someone like Diana - who is so refreshingly authentic and real. Reminds me - yes. We are facing this together. We all need each other to remind us and others where true beauty lies - and it lies within. With empathy and compassion for our fellow people. Education and awareness are paramount.
Therefore, together with its 35 global member NGOs including Burn Survivors of New England, Face Equality International is compiling expert research, materials, and guidance from across the sector in an effort to amplify the voices of those with direct experience of disfigurement and to advocate for change across schools, businesses, communities and with key audiences such as media professionals and teachers. After over a year of mask-wearing and social restriction, arguably the issue of facial disfigurement is less exposed than ever. “Masks only cover so much, so I better be prepared and educated to accept my differences mask or no mask.”Mylene Larsen, burn survivor of 16 years.
Commentary on disfigurement often excludes those with direct personal experience and enforces harmful stereotypes that influence negative perception, bias, and in turn give way to harmful behaviors, discrimination, and abuse. “BSONE’s goal is to get to a point where the public is educated enough, and we teach self-empowerment that wearing a mask is not a relief.” George Pessotti, founder of BSONE.
Disfigurement is a globally neglected human rights issue. Experiences for someone with a facial difference might include bullying, staring, intrusive questioning, low self-esteem in the global ‘look-perfect’ culture, isolation, low expectations in school, problems getting work, discrimination in the workplace, and abuse both on and offline. All of which is maintained by negative, inadequate representation in the media and public life, which further marginalizes the community.“Our job is to educate and empower burn survivors through peer support and advocacy. To be open with our stories if that is comfortable to us. Then in turn everyone who aligns with Burn Survivors can educate the “public” about burns and reintegrate back into the community.”, Diana Tenney, President Burn Survivors of New England.
Phyllida Swift, CEO of FEI said:
“Many of the negative experiences faced by someone with a facial disfigurement are a result of unwitting, well-intentioned awkwardness around difference. Others are outright cases of discrimination. All of which require a drastic drive for greater education across key sectors and communities who can all help us to make face equality a reality.”
BSONE will participate by sharing the following on social media and their website, . The International Face Equality Week campaign will include a variety of activities in addition to the launch of the resource-hub to amplify the voices of the facial difference community by providing a moment in the year to highlight their lived experiences and to engage with wider society. Activities will include a selfie campaign and dedicated Instagram filter as a direct challenge to the ‘look-perfect’ culture associated with the concept of a selfie.
FEI will also run a series of educational sessions on Facebook Live throughout the week featuring key voices from the community offering life lessons and practical guidance on issues including representation in books and film, teaching face equality in the classroom, and how to share your story to bring about change. ENDS
Notes to editors
Contact: Diana Tenney,
About Face Equality International
The mission of Face Equality International (FEI) is to mobilize the many groups and organizations, big and small, national and international, which support and represent people with facial differences and disfigurements and thereby to create the critical mass and solidarity needed to gain global attention for the campaign for face equality. The alliance acts as a powerful, collective voice for those affected by facial differences.
Face Equality International was created by Dr. James Partridge OBE, founder of Changing Faces UK, with the support of nine founding members. The alliance was launched in November 2018 and now has thirty world-wide members. Most member NGOs are condition-specific (i.e., for people with clefts, burns, craniofacial conditions, psoriasis, and other conditions) and their members have very different medical and surgical needs and treatments. But their members also face very similar psychological, cultural, and social barriers to living fulfilling lives. Face Equality International advocates for people who have any condition which can affect their face – such as those which affect faces only like cleft lips and palates or facial paralysis and those that affect faces and bodies like scars, vitiligo, and alopecia.
FEI has member organizations in the following countries:
● Czech Republic
● South Africa
● South Korea
● The Netherlands