Gaining Respect for Visible Differences
Tony Gonzalez is a burn survivor who recently attended Face Equality International’s Forum to discuss scarring inequality. Below he reflects on his burn journey, experience at the forum, and how we can create a world where everyone is treated equality.
Photo from Face Equality International - Pictured above are Amy Acton and Tony Gonzalez at the 2019 FEI Forum.
In 1997, I was involved in a propane gas explosion while vacationing in Minocqua, Wisconsin. I was burned on over 95% of my body and had a 0% chance to live. As difficult as the physical healing was, the phycological and emotional transfer from the safety of the hospital cocoon back home to my new normal and reintegration into society was the largest hurdle of my journey.
Face Equality Forum
Recently, I attended the Face Equality Forum hosted by Face Equality International in London with Amy Acton. I was honored and excited to be part of the Face Equality movement. The forum brought together many leading organizations from around the world to discuss face equality and find strategies to eliminate disfigurement discrimination. As a whole, we looked at the issues and challenges of (in)equality. As I listened to the vast information and strategies to change the stereotypes and stigmas attached to those with differences, I couldn’t help but be excited to bring the movement deeper within Phoenix Society.
(Interestingly, while purchasing tickets when visiting a museum on the trip, I was offered a discount for “persons who are disabled.” While I do not consider myself disabled, but “challenged.” Whether I was offered this because of my facial difference, or my missing fingers didn’t seem to matter.)
Respect for Visible Differences
Though it has been called different names, it has been an intricate part of the Phoenix Society’s mission as part of the many services offered to the burn survivor throughout the entire recovery process.
Most of my experiences with scarring inequality have and continue to be with staring. In the beginning, it was because of the more obvious physical needs of wearing a Uvex plastic mask on my face or a walker which I used when learning to walk again. It took a long time to realize MOST people are just curious. But, one crucial thing that I have learned is that you can’t control people’s reactions. However, you can control your response and control leads to social confidence. One tool, that is part of Barbara Kammerer Quayle’s STEPS program, which I help teach, is to Rehearse Your Responses (RYR).
STEPS is a simple and effective tool for anyone affected by a burn injury. STEPS stands for Self-Talk, Tone of Voice, Eye Contact, Posture, and Smile. By using STEPS, you can project confidence and send the message to others that we are self-assured. RYR is another helpful tool to use when people ask questions. This tool can increase your social comfort and confidence when you’re asked unexpected questions.
Writing down and memorizing or carry with you, responses to answer to questions when you are caught off guard or surprised in social settings, or just not feeling particularly well that day. Preparing for questions or statement like “What happened to you?” or “What’s wrong with your skin?” have been extremely beneficial in my journey. A simple response may be “I was burned in a house fire, and that’s all I care to discuss today. Thank you for asking.” Then smile and walk away. You’ve politely answered the question and ended the conversation.
Gaining respect and acceptance that our physical differences do not define us and having social confidence is a challenge the burn community continues to face. For many, it can take a lifetime, but its importance cannot be overlooked as a positive reinforcement to carry us into successful, productive lives. For me, it was an opportunity to be educated on what is happening globally and to see how others view and handle discrimination. For many survivors, it is not just a facial difference that makes us “unique” and tells our personal story - it also makes our challenges unique, which, I believe promotes diversity and awareness when we think of opportunities for growth and success.
Tony is a Phoenix SOAR volunteer, a regular Phoenix World Burn Congress attendee, and inspiring advocate. He has presented at a variety of conferences, is a Phoenix SOAR coordinator and was one of the co-chairs for the Never Alone Campaign. Tony also has a second degree in Architecture and Design and runs a golf tournament to help send others to Phoenix WBC.