My name is Sophia Gibb. I am a two-time paralympic medalist and two-time world champion in the sport of swimming. I was born with a form of dwarfism called achondroplasia. I was a 1 in 26,000 chance of this occurring as both of my parents are of average height. October is National Dwarfism Awareness Month, and I have so much pride in my dwarfism. I am lucky to have my Little People of America (LPA) community to have helped me develop into the confident young woman I am today. There are over 300 known types of dwarfism, I have the most common type- achondroplasia. Throughout this article I interchange, dwarf & little person (lp), these are both terms that are acceptable.
In 1957, Billy Barty bravely led the first LPA convention in Reno with twenty other LPs. I say bravely, because not only was he a great leader who was thinking innovatively since this had not been done before, but he put himself out there, and asked for other LPs to join him on a particular date. He risked failure. He risked ridicule. He risked disappointment. And thank goodness he took the risk sixty-six years later. To this day countries in Africa are afraid to gather in groups in fear of the hazing, danger and ridicule they might encounter.
Recently the dwarfism community has been hit with a drug manufacturing company trying to weasel their way into our tight-knit community. The drug manufacturing company BioMarin has made quite literally hundreds of millions of dollars in revenue this year because of the FDA approval and distribution of their new drug now called “Voxzogo”. It is an injection for children with Achondroplasia dwarfism that claims to change the effects of dwarfism and cause the child to grow taller than they would have without the treatment. This drug has yet to show proof of aiding in any other of the medical issues dwarfism can cause; like not having enough room in our spinal column for spinal fluid to pass through; which can become life threatening very quickly, nor has it been proven to give enough height to make a difference. It literally only helps individuals grow a couple of inches… What if those hundreds of millions of dollars went to education and advocacy for the dwarfism community? Producing movies that showcase actors with dwarfism playing roles that are dynamic and real, publishing children’s books that teach physical difference and beauty, funding seminars for businesses that educate workers on accessibility, lobbying for new laws that require public buildings to be actually accessible, the list of examples could go on and on. These hypothetical advocacy projects could change the world for the dwarfism community. We don’t need a drug to change us, we need to change the world.
Onto something more positive and what being a dwarf means to me!
My pride in being a dwarf stems from the LPA. LPA has gathered every year nationally for the past 66 years (missing only one year due to covid) on the July 4th weekend.
This is what LPA means to me. LPA is Love.
The words LPA and Love can be interchangeable in the next few sentences…
***Love is a race down the hotel corridor when you’re ten years old and realizing that you aren’t being left behind for the first time in your life.
***Love is learning that you can advocate for that second set of books for your child to keep at home, without having to worry that you are just being a squeaky wheel.
***Love is seeing a dwarfism specialist for the first time who knows how to pronounce your diagnosis.
***Love is realizing that the dwarfism specialist is knowledgeable about LPA culture and is there to support your journey and those medical choices within that journey, not necessarily to change them.
***Love is not being the different one for a week. Being the same has its benefits from time to time. ***But love is also learning to embrace your differences because differences can be strikingly beautiful.
***Love is… knowing you are not alone, whether you are in the older wiser generation, a teen trying to figure out why their parents are so embarrassing, a couple just starting a family, or a brand new, terrified parent. You are not alone, nor will you ever be, as long as you are willing to come back to LPA.
I have learned to navigate a world to fit me better. Dwarfism has brought me a group of friends and role models that I have learned many things like how to adapt a car so I can drive, to facing the hard days when I feel humanity is not kind. My dwarfism has led me to be eligible for the Paralympics and I pursued that dream, and it was one of the best decisions of my life. We are humans all navigating a world that wasn’t really built for us. We are doctors, nurses, teachers, engineers, and professional athletes. We are just like you, just a little smaller. Be curious, be kind. Happy Dwarfism Awareness Month!
