Kailyn Looby is a 20-year old junior biology major at Siena College in Albany, New York spending her spring vacation speaking to students at all five of our elementary schools about a better understanding of physical disabilities.
Her emphasis is on removing the sense of otherness by making connections to them. Kailyn is a remarkable example of helping children see beyond classmates’ disabilities and focus on the ways we are all the same inside.
Kailyn’s birth on June 14th, 1997 was a traumatic one resulting in permanent nerve damage to her neck and shoulder, a condition referred to as Erbs Palsy or Brachial Plexus Palsy. Her nerve injury impacts virtually every aspect of her life as it hinders function in her shoulder, arm and hand through decreased range of motion, strength, sensation and even her balance. Everyday activities presented huge obstacles for her growing up and the disability, in seeming to be almost invisible, taught her early how to advocate for herself.
She had to adapt to how she learned to perform everyday activities which took a lot longer and with much more effort than the average child in learning to crawl, tie shoes, and put a ponytail in her hair. The understanding and loving support of her family were key ingredients in helping Kailyn make comfortable progress.
Before going to school, Kailyn faced surgery at the age of 2 to attempt to recover some of her motion, range, functionality and strength. It included outpatient physical training. The thinly veiled invisible differences were beginning to disappear as her younger sister asked why she didn’t have to do it.
In the classroom, more attention began to be drawn to it as Kailyn needed a word processor for some written communications, a special chair which had a seat pad and a back support mechanism. She participated in as many gym activities as she could but had to sit out those that were beyond her physical capabilities. In the playground, she avoided the monkey bars “like the plague”.
Kailyn hated to draw attention to herself at these times but quickly learned to speak up and be her own best advocate. The upside was that it gave her a lot of strength in the face of occasional bullying more prevalent in elementary school than in middle or high school where students gained more maturity.
It also provided Kailyn with the opportunity to pick her friends. The Understanding Disabilities program in the Reading school’s curriculum also gave Kailyn the opportunity to strengthen her advocacy for students with disabilities.
The mission of Reading’s Understanding Disabilities is “to provide awareness programming to help children see beyond the disabilities and focus on the ways that we are all the same inside”. It gave Kailyn the “raison d’etre” and avenue to develop her own advocacy as her peers learned about people like her and got first-hand experience on the daily struggles they face.
The seed was planted when, in the third grade, she watched a girl named Katie speed up onto the stage with her cousin hanging onto the back of her wheelchair. Kailyn just had to be up there and it was in the 4th grade at Birch Meadow where she stepped onto the stage, in front of the entire third grade class, and delivered a power-point presentation she prepared herself. She spoke about Erbs Palsy. It was the beginning of public speaking engagements she continues to do today.
Kailyn has been a keynote speaker at the bi-annual Plexus Network Camp and authored several features in their on-line publication. As a high school sophomore, she spoke at Baltimore’s John Hopkins Symposium on Shoulder Dystocia and Birth Injuries.
In addition, she’s been the keynote speaker at the New England Brachial Plexus Group Day at the Boston Museum of Science and her speech was published by the Boston Children’s Hospital. Moreover, she’s been invited for the past 3 years to speak at the University of Albany’s High School Access Day for disabled students and tries to get back to Reading to speak at our schools a couple of times a year.
As always, Kailyn’s mission is centered on trying to change the experiences of the disabled through educating the majority of those not disabled. She strongly believes the old proverb that “you will forever be known by the tracks you leave”. The legacy you want to leave should be a positive one that’s based on the way you’ve touched others.
When home from Siena, Kailyn lives with her parents Richard, a synthetic chemist, her mom Lisa, who’s a soccer coach in her spare time, and younger sisters Julia and Sarah. The Looby’s have been Reading residents since 1998. Her parents came to Reading partly because of the excellent reputation of the school system then. It’s leadership in advocating Understanding Disabilities for the past 33 years is well known throughout surrounding communities. Understanding Disabilities is now totally supported by private donations.
Kailyn intends to seek a graduate degree in biology when she finishes at Siena next year.
She would like to leave Reading residents with this thought: “You’ll never lose cool points for being compassionate”. From this author’s viewpoint, Kailyn is the perfect role model for advancing the causes of Understanding Disabilities. She has definitely advanced Reading’s position in this field, a position that has no equal among surrounding communities.