In honor of Dwarfism Awareness Month, we are featuring a special post written by Twining’s Marketing Coordinator, Casey Johnson. Casey is 3’7″, and has SEMD dwarfism. She is the Vice President of the local Little People of America Chapter. At 24 years old, Casey has received her BS as well as her MA in Math, and is currently completing her PhD, also in math. As a swimmer, she has competed internationally in the Special Olympics, in both 2004 in Athens and 2008 in Beijing, winning the Bronze Medal in Athens. Casey currently holds the World Record in relay!
October is Dwarfism Awareness Month. Dwarfism is a medical or genetic condition that usually results in an adult height of 4’10” or shorter, and affects both men and women. There are over 200 distinct forms of dwarfism and skeletal dysplasia with achondroplasia making up approximately 50% of the dwarfism population. About 80% of people with dwarfism are born to average-height parents and have average-height siblings.
Being one of an estimated 30,000 people in the United States and 651,000 internationally with dwarfism, I take personal responsibility to bring awareness to the world regarding those with dwarfism and any type of disability. People with dwarfism first and foremost are Human, just like everyone else and all that they ask for is to be treated equally. Yes we may need a stool to accomplish some things, but we should be held to the same expectations as anyone else. We do not want to be pitied. We want nothing else than to be accepted just like everyone else. Living with dwarfism is a unique experience and the following is the best way to describe it:
First of all, it’s not all sunshine and rainbows; it’s a storm that has no mercy. You see a lot of butts. You can try to look away, but it’s never completely possible to not be staring at someone’s back side.
You are constantly stared at, and it’s not because you have food on your face or that you messed up your makeup.
You must adapt everything, the pedals on your car, your clothing, shoes, and the endless amount of stools in your house.
People assume that you are an invalid and can’t do things no matter how good you are and how hard you try. You’re constantly babied and not given the same chances as everyone else. We say we treat everyone the same, but let’s be honest here. It hardly ever happens.
You always get overlooked for sports because how the heck are you going to be any good at what your friends are playing.
Applying for jobs is another mountain and a half to climb. You can’t just walk into any given job and apply, no matter how smart and qualified you are, if you don’t look the part it’s not going to happen.
Lastly, it is mentally and physically draining! Going out into the world and everyday knowing that people will laugh, and they will stare. That you must go that extra step just to complete the most simplest of tasks and that even if you have a bad day the challenges and people are not going to give up. Some days you just want to scream “WHY ME?!” Why am I the one who is different, why do I have to be the one who missed out on those extra inches. Why?
You think that life is unfair. Some days you wish that if only I was tall, I would be accepted.
But when the sky’s clear and the clouds begin to part, things start to appear a little bit brighter.
Because you see so many butts, you’re always looking up. Seeing the beauty that’s ahead, instead of what is right in front of you.
Even though it can be uncomfortable to be constantly under the microscope, you stand out because you are LIMITED EDITION, people remember you, you leave an impression on the average tall person, it’s whether you choose to take it and leave a good one. That’s your choice.
Since you are lacking in the height department, your clothes are too. You save money in the kids section. Capris are used as pants and your youth medium hoodie has just become $20 cheaper than that adult small your friend is paying for. The look on the average Joe as you jump out of your car to fill up with gas…. priceless.
When people already have that misconception that you can’t do anything, and you prove them wrong…. that’s a great feeling. When you execute it better than the so called “best player”, even better. “May my haters live long to see my success.”
And though I cannot deny that this life of limited edition can be mentally and physically draining, I choose to overcome it. I have a choice to get up every day and prove to the people that I AM worthy and that I was put here to make a difference. I can educate others to clear a path for the ones coming after me, so their life will not be as hard as mine. I can accept the fact that I WILL be in the spotlight and my life will not be lived in the shadows no matter how hard I try and I can LIVE IT.
In high school, I chose to work hard every day at school and be one of the top students. I chose to find a swim coach that saw beyond my height and trained me like every other swimmer on her team. My choice to not settle for less than I deserved allowed me to represent my country at two Paralympic Games, win medals and break world records. My choices allowed me to not only complete college, but go to graduate school where I am currently working on my PhD in mathematics. I want to be a college professor and I will not let anyone tell me I can NOT just because of my physical appearance.