Self Advocacy and Self Acceptance: Living With A Facial Difference
Individuals with craniofacial differences share their insight on living with facial differences, navigating the medical community, and the journey to self-acceptance and advocacy.
by Dina Zuckerberg, Iva M. Ballou, Chelsea Buyalos, Matthew S. Joffe, Christine Maier, Margaret Shair
Article author Iva M. Ballou was born with a cleft lip and palate.
Self-acceptance is an ongoing process, a journey that takes years and sees each of us through our stages of life. Acceptance takes form and is sharpened over time, blossoming with each positive human encounter.
We want to share what we’ve learned, navigating the surgeries and stages of life with a craniofacial difference. At the core is how advocacy and compassion extend a very long way.
As a fellow craniofacial champion, medical professional, parent, friend, or neighbor, perhaps this provides some insight that will help you on your own journey. At the very least, we trust it’ll make you a better, more empathetic upstander for the craniofacial community.
“Here’s to us, and the life pursuit of coming to terms with and celebrating differences.”
This text is adapted from the This is Me: Living With a Craniofacial Difference panel hosted by the American Academy of Developmental Medicine & Dentistry (AADMD) as part of their 2023 Virtual Grand Rounds series. We welcome you to view the full discussion here.
See us in the room and include us in the conversation.
One of the things that means the most is that you acknowledge and talk to us directly. We have had too many experiences of being in the center of a room, yet entirely invisible to people. We are present and we notice. Don’t talk around or go over us. Make eye contact, and show some humanity and warmth.
Article author Chelsea Buyalos living with Goldenhar Syndrome.
When this occurs in a medical setting, it becomes even more unsettling given we are collaborating over something very important to us: our health and well-being.
Particularly having often been a patient at teaching institutions, walk me through the steps. Help me understand what we are looking for and what I can expect. If you don’t know, it’s okay to say that, too. It builds openness and trust. Medical trauma is very real, and it can also be eased by being transparent and addressing situations.
We’re in these settings to deepen understanding and help better the next line of professionals in their roles, growing compassion that hopefully extends across all areas of life.
I am an expert on myself.
Each of us knows our body best, even if we can’t comprehensively see the full picture or connect all the dots at a given moment. We know how we feel and think. We remember the details and can describe our history, providing invaluable observations and insight.
Allow me to contribute my expertise to discussions and include me in decision-making. It’s my life we’re talking about, and I’m invested.
Listening to what I’m saying shows respect for me as the person in my body. Hearing affirmations like “I believe you, because I know you know your body better than any of us do” gives me agency to express what is going on and know I’m being respected. It empowers me to have a say.
There came a time in my journey when I said I was done. I didn’t want to have any more surgery. My team was amazing. They understood. They listened, and my parents listened.
Your words carry weight.
Article author Margaret Shair is living with Goldenhar Syndrome.
Remember how the words we use matter, and we each have a choice in using respectful and empowering language.
The nomenclature of the medical world carries particularly heavy weight, an issue that is slowly being talked about and addressed. Small, incremental changes make all the difference.
Use speech to show that you care – it’s a ripple effect.
Be people-centric. Prioritize language that focuses on strengths and potentials. Put people ahead of characteristics and conditions.
Article author Matthew S. Joffe is living with Moebius Syndrome.
Every parent should be congratulated on the birth of their child. Remember that there is no “defect” - a child born is an existence to be celebrated and a name to be proudly spoken. It is an active choice to stop spreading stigma and hurtful, superficial judgment.
We have differences, some of which we are born with. To come to proudly own and embrace them is a beautiful thing, a process that can be encouraged by using kind and supportive language.
Remember the human being.
We are not beholden to labels or our conditions. While we all have adapted to living with a craniofacial difference, and know all-too-well the myriad of ways that this affects life, we are not a textbook diagnosis.
Get to know me, my likes, my dislikes, my hopes, my concerns. What am I looking for?
Amidst being poked and prodded, hearing a medical professional assert “you know there is a human soul attached to this” makes all the difference. It makes you feel seen and protected as a human.
Article author Christine Maier was born with a cleft lip and palate.
My diagnosis doesn’t define anything else I do in life. It is a part of me. It is a part of my journey, and that is something I fully embrace. I’d like for you to embrace that, too.
Celebrate our wins and us as we are.
A very real part of being human is having insecurities. For us, our insecurities are on display to be sized up with every interaction. Our intelligence and ability is often questioned as a result.
For the longest time, many of us have perceived two worlds and felt that we had to bend or accommodate in the “normal” world to be successful. What could be “fixed” for us to succeed like everyone else?
Slowly, over time, you come to realize that this is all a construct and a myth. We’re adapting to a world that isn’t built for us, but that doesn’t mean that we don’t have our place to exist and to be comfortable in our own skin.
Not everything is something we’re jumping to fix. When I say I am done, that I want to take a pause or move on from the next intervention or procedure, please accept that for me. Understand that with the challenges that it brings, I still choose me.
Let me show up in the world as I am when I say that’s what I want. Honor me.
About the authors
Article author Dina Zuckerberg was born with a unilateral cleft lip, no vision in her left eye and hearing loss.
Dina Zuckerberg has served as the Director of Family Programs at myFace for 10 years. She was born with a unilateral cleft lip, no vision in her left eye and hearing loss. She uses her personal experience of having a facial difference to connect with and advocate for the individuals and families myFace serves. Dina is the host of myFace, myStory: Voices from the Craniofacial Community podcast which has had over 30,000 views and listeners in over 2 years. She has spoken at more than 300 schools for the Wonder Project reaching over 90,000 students, she leads the myFace Adult Support Group and helps facilitate the Parent and Adolescent Groups. She has authored articles for Exceptional Parent Magazine and Helen Journal and has presented at the prestigious American Cleft-Palate Craniofacial Association (ACPA) Meetings over the last few years. In 2021, she was the recipient of the American Cleft Palate-Craniofacial Association Family Services Leadership Award which is given to an individual or group who has demonstrated exceptional service and leadership on behalf of individuals with cleft or craniofacial conditions.
Iva M. Ballou was born with a cleft lip and palate and has now dedicated her life to boosting confidence in those with facial differences. She is the Community Development Manager for Smile Train, a TEDx and Motivational Speaker, Cleft Confidence Coach, and a facial difference advocate who uses her gifts to increase awareness and education for the facial difference community. She is also a co-host of the Love Meets Joy podcast. In this honest and empowering series, she discusses her personal journey and all things cleft. Through finding her RealSophisticatedJoy, she now empowers others to pivot from shame to confidence in their journey. Iva is the founder of RealSophisticatedJoy. This company empowers women and girls affected by cleft and craniofacial differences to find confidence so they can live a life filled with joy. She has joined the Wonder Project team to inspire students to choose kindness and be upstanders.
Chelsea Buyalos developed a love for music at the age of four; a love that was sparked by Puccini’s Tosca. This love blossomed and soon led to the start of her formal training at the age of eleven in her small town of Chester, Virginia. Despite the challenges presented to her with Goldenhar Syndrome, Ms. Buyalos has continued to pursue her goals. In 2005 she made her operatic debut in Italy with Operafestival di Roma in their main stage production of Mozart’s Le nozze di Figaro. While in Rome, Ms. Buyalos was also featured in several recital and opera scene programs. In recent years, Ms. Buyalos has also been featured as a soloist in other concert works such as Mozart’s Requiem, Rossini’s Petite messe solennelle, and Rutter’s Requiem. Currently, Ms. Buyalos serves as the Executive Director at the Perkinson Center for the Arts and Education where she devotes her time to fostering arts education in the community where she got her start in the arts. As a member of the craniofacial community who has lived with Goldenhar Syndrome, Chelsea frequently shares her story with others in an effort to remind us all to always #ChooseKind!
Matthew S. Joffe recently retired as the Director of Outreach and Education at the Wellness Center of LaGuardia Community College/CUNY. Formerly the Senior Director of the Office for Student Guidance and Disabled Students Programs, he came to LaGuardia in August 1994. He has over 42 years of experience as an educational therapist, psychotherapist, and trainer. He has been nationally recognized as an expert in the field of learning disabilities and has had extensive experience training professionals in vocational rehabilitation, learning disabilities, traumatic brain injury, and chemical dependency. He is also a trainer in Mental Health First Aid (MHFA) and MHFA 2.0. Matthew was born with Moebius Syndrome.
Christine Maier was born with a cleft lip and palate, classified as learning disabled, and has had over 20 surgeries. Often underestimated and told what she can’t achieve, she became an NYPD Sergeant, author, speaker, and the first female director of NYC Emergency Management Watch Command. She’s passionate about helping others turn their differences into superpowers.
Margaret Shair was born with Goldenhar Syndrome and has had more than 30 surgeries. She works as a research assistant studying maternal health and fetal and infant development. She has always viewed people telling her she wouldn’t be able to do something as a challenge. She has been involved with myFace for the past decade, sharing her experiences with medical students and other myFace families to spread awareness and advocate for those with facial differences.