Kindness counts a lot for Lizzie Velasquez, who encourages the virtue as a motivational speaker, author and anti-bullying activist. Officially diagnosed with neonatal progeroid syndrome in 2014, the condition combined of both Marfan syndrome and lipodystrophy causes her to look different from most people. Velasquez, 29, has a large social media and YouTube following, and her story has been featured in many national and international media outlets.
She produced a 2015 documentary about her life titled, A Brave Heart: The Lizzie Velasquez Story.
She spoke with the Register about her mission, faith journey and what it has meant to face bullying, explaining that she believes her condition is a gift from God — and intended for the mission she carries out daily.
What is the primary message that you convey to your audience?
Every year, my message changes because I learn something new. Right now, my biggest message is to always see that there is a light on the other side of being bullied.
How does your faith impact your work? Are you a practicing Catholic?
Yes, I am. It’s been a hard balance since I began telling my story. Many places will not allow you to speak about faith, especially schools.
When I first started, all I wanted to talk about was my faith. … I was met with a lot of pushback. I’ve found a nice balance. I’ve turned it from sounding like I’m preaching to instead saying, “For me personally, my faith is what helps get me up every morning.”
Is prayer an important part of your personal life?
I feel like I have been on such an incredible faith journey that I’m still figuring out. When I was younger, I blamed God for “making all these bad things happen to me.”
For a while, I went through the scrutiny of “God, you say you love me, but you give me all these obstacles.” Now I see my faith as such a gift.
I [used to] stress about so much — paying bills or being gone all the time — to the point where I made myself sick. I realized I needed to stop doing that, because God plans everything out. Putting my hands up and saying, “I surrender all my worries and fears” made me feel different. Whenever something stressful happens, I don’t feel anxious anymore. There is a sense of peace that it will be okay.
How do you deal with the terrible things that some people say to you?
Before, I was so hurt. … Now, I feel sorry for them. I don’t know their backgrounds, and I don’t know who their examples are. They may only see hate, so they turn that around and, unfortunately, turn it to me. I can’t be mad — that may be all they know. If I continue doing what I’m doing, maybe I can be the person who shows them that they can channel that pain in another way, and it doesn’t have to be by hurting someone else.
Some doctors pressure parents into an abortion if their child is diagnosed with a disease, malformity or disorder. What would you say to these parents?
My parents did not know that I had this syndrome when I was born. Six weeks before I was due, the doctor said that I stopped growing and there was no amniotic fluid around me. I had to be born right away via caesarean.
The doctor did not even allow my mom to see me physically. They took me to the NICU, took a Polaroid picture and showed it to my mom. They said, “You will probably be scared when you see her.”
She, of course, would not have it and told them to bring me back into the room. My parents always said that once they realized that there was something different about me, they stopped asking, “Why us? Why were we put in this situation?”
Instead, they asked, “How can we help her? How can we raise her to the best of our ability?” and said, “God’s will is God’s will.”
When considering having another child six years later, the doctors said not to. … My parents again said, “God’s will is God’s will.” They didn’t test for anything different about the baby. My sister [and brother] were both born completely [whole physically] and full-term.
My advice for parents who are told to abort their child, or that it will be too much work, is to put earmuffs on that. You will be the person raising this child. If you can do it in a way that is medically safe, and full of love, strength and courage, then you should do that. Doctors can tell you so many things — I love, trust and believe in doctors — but at the same time, you cannot always predict a child’s exact future.
If you are willing to “coach” and raise this person into the best version of themselves, I say go for it.
What would you say to parents of children with disabilities?
Embrace, appreciate, acknowledge and accept your child’s disability. … It is not something to look down upon. My parents wholeheartedly embraced and loved absolutely every different thing about me. … If someone stared or made me feel awkward in public, instead of getting angry, my parents said, “Hi, this is my daughter. Would you like to tell her hi?” Things like that make a big difference.
Can you elaborate on the importance of inner beauty?
I think we were put on this earth for a reason, and finding that inner beauty is such a small part of discovering that reason. I believe that learning to love yourself is a helpful tool in continuing whatever purpose you are set out to do.
Once you have that self-confidence, you can say, “I’ve got this. Now why did God put me here? What am I supposed to do to not only live out my best life, but to live out his best life?” Once you have the tools from failure, enduring struggles and learning to love yourself, you will be more well-equipped to take on anything.
What would you say to women who are insecure with their outer appearance?
No one will ever be happy with anything about someone else unless they are happy themselves.
Everything someone tells you, whether it’s “you’re too thin,” or “you’re too big,” or “you’re not pretty enough” … they say because they have insecurities.
Whenever I was down about myself growing up, people said, “Lizzie, don’t listen! You’re beautiful; you’re you!” I appreciated it, but I didn’t believe any of it. … None of that really stuck with me.
I never learned to embrace it until I told myself that. I looked in the mirror and said, “Yes, I truly and wholeheartedly believe that I’m beautiful, strong and brave.” There are many people who can say, “Don’t listen to them.”
I can tell you these things, but it will not mean anything unless you step up and say, “I’m willing to start my own journey of self-acceptance.”
Is there anything else you’d like to share?
My work shows me that there is hope out there. It is okay to be truly and authentically yourself.
At the end of the day, we are all humans living in this world together.
Telling my story and seeing it make a difference … it’s all worth it.
Jacqueline Burkepile writes
from Fort Smith, Arkansas.