By Jessica Dalonzo
My name is Jessica Dalonzo. I am a Henry Viscardi School (HVS) alumna from the Class of 2018. I also have Ehlers-Danlos Syndrome type 7A, a connective tissue disorder that lacks proteins called collagen, essentially affecting the muscles and joints.
In addition, I have severe joint hypermobility, congenital hip dislocation, hyper-extensible skin (elastic skin), susceptible to bruises and tears. I also have Kyphoscoliosis (kyphosis and scoliosis).
To mitigate the adverse effects of Kyphoscoliosis, I have a Vertical Expandable Prosthetic Titanium Rib, which are rods to keep my spine straight and a device to treat a congenital condition whereas severe deformities of the chest, spine and ribs prevent normal breathing, lung growth, and lung development.
Initially, my spine was compressing against my lungs, potentially collapsing if I did not get the surgery immediately.
I have had more than 30 major surgeries so far and there are yet more to come to improve my health. Moreover, I rely on my powerchair to get around and travel; I cannot bare weight at all. I also require someone to help me with taking care of my daily needs, whether it be my parents or my aide.
Disability Doesn’t Influence Morale
However, despite of my disability, I do not allow it to influence my morale and view of life. It is only the beginning.
I began attending The Henry Viscardi School at the age of five. I vaguely remember my first few days at HVS, but from what others have told me, I am intelligent, sassy and rather witty.
However, I vividly remember going through the medical process of being a new student: At the time, I asked the head nurse, ‘How many bosses do you have?’ “Three”, she said. ‘Well I’m your fourth,’” I replied.
HVS is a place where everyone is essentially family and you never feel alone, there is always someone you can talk to and you never will feel judged. The school has all the services and accommodations to achieve academic success.
I graduated with an Advanced Regents Diploma. I never thought I could do it, but with the support of everyone around me, I achieved my goal. What I miss most about HVS is seeing my friends every day and playing in the wheelchair basketball team. I never thought I would ever convince my parents to play basketball because of how fragile my bones are, but I am grateful they let me participate.
Currently, I attend Queens College in hopes to be an elementary school teacher and then go to law school to be a Disability Rights Advocate Lawyer. Transitioning from HVS to college was not as hard as I expected. I remember my first day I was trying to count how many people in wheelchairs I saw.
But then I realized I was no longer attending HVS, but rather the real world. My first challenge was finding out they did not have a bathroom to meet my needs. I had to put my “lawyer” attitude on and self-advocate. After a month of struggling and immense pressure, I got my own bathroom. However, it was on the second floor.
One time the elevator broke for a whole week. I absolutely did not tolerate this mishap and demanded for a bathroom to be built on the first floor. Eventually, they built me a new bathroom on the first floor right where my classes are. It was a result of my persistence, perseverance and assertion.
My reason for telling you all this is because one must always fight for what is needed and deserved. In short, individuals tend to think because you are in a wheelchair you are inferior and take advantage of you. Now college is one of the best experiences I have ever had. I have learned to be myself and never be fearful of using my voice when necessary.
This has definitely been a major transition and I am proud to say I ended my first semester with a 3.25 GPA. Nevertheless, I hope to still become better throughout the rest of my college career. Although I am in college now, HVS will always hold a special place in my heart as it has ultimately helped shape me into the woman I am today.
I would like to recognize Mr. Kempthe, president of the Henry Viscardi School. Mr. Kemp has opened up many new doors for the disabled community. He has traveled and continues to travel around the world to advocate, educate and bring awareness to others about people with disabilities.
I aspire to be a successful lawyer as Mr. Kemp is. He has been an inspiration to me ever since I met him. Mr. Kemp being disabled himself, understands the daily challenges we face and he is always there to support.
Even though I graduated, Mr. Kemp still keeps up to see how I am progressing and he always says if I ever need his help he is there.
Lastly, I will conclude with this: if you are going through a tough time managing happiness, a friend once told me, “Sometimes the greatest challenge is not the relationships with others, but rather with yourself.”
Remember to always find happiness in every day. I hope I have inspired you all to be the best person you can be.
Dalonzo is a parishioner at St. Mel’s Parish in Flushing. She was chosen as a speaker at Star Luncheon, an annual fundraiser for her alumna, the Henry Viscardi School.