‘College is NOT an option for you.’ It was a defining moment. My body gave up, but I was ARMED with newfound determination.’: Young woman shares journey with Cerebral Palsy, ‘I had to learn to embrace myself’

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“Respect, dignity, independence, a sense of belonging, self-pride: these are all things every individual deserves in life regardless of circumstance. Unfortunately, growing up with a disability can sometimes make these things more difficult to accomplish. I was born at 27 weeks gestation and, after falling behind physical milestones, the doctors ran tests and I was diagnosed with Cerebral Palsy. Cerebral Palsy has a wide range of associated medical issues that affect individuals in many ways. In my case, it affects both of my legs and my left arm. From what I know of that beginning part of my journey, the doctors told my parents not to expect much of me. This is a common ‘post diagnosis’ conversation for parents and can lead to negative disability associations. While my disability has presented challenges, I continue to thrive on my ability to adapt to them and assert my independence. Growing up, my parents instilled in me the confidence I needed in order to know that I could do what I wanted to do in life.

Courtesy of Dr. Gabrielle Ficchi

My twin sister and I were my mother’s first two children, and my mother will be the first to tell you that she did not know anything about raising a child with a disability—she raised me as she would any other child. This mindset illustrates the premise of how I grew up and demonstrates the viewpoint that has guided my thinking from a young age. Oftentimes, being diagnosed with a disability means unconsciously being put into a protective bubble. While this protective bubble may represent love and protection, people don’t realize the damaging effects of not letting an individual experience life for themselves, to the fullest extent that they possibly can. I was never put into the bubble; I lived my life just as anybody else would have. Growing up as one of six kids, we were all treated equally; my parents expected the same of me as they did any of my other siblings. Doing well in school, having chores, getting a job, etc. was all par for the course. Despite any physical challenges, it was expected of me too, all in an effort to make sure I fully participated in all aspects of life even if that meant sometimes going against the grain of what was considered ‘normal’ or conventional.

Courtesy of Dr. Gabrielle Ficchi
Courtesy of Dr. Gabrielle Ficchi

The first time I noticed I was different was in Kindergarten, when I realized I was the only child who used a walker. My school experiences at that point were typical for the most part. I was always in the general education classroom with my peers but constantly had to prove I belonged there. Looking back, those early moments where my family had to fight for equality set the trajectory of my whole life. With love and support, I was able to have a typical childhood. However, there came a time in my life where all of their love and support could not overcome the hardships that I found myself faced with.

Teenage years are hard for anybody, the focus shifts from carefree to worry about whether or not you fit in, making the right impression, having the right friends, being ‘popular,’ etc. For the first time in my life, I felt like the odd one out. Everyone started to notice I was different and, at that age, different was thought to mean something bad. This time in my life was isolating and the confidence I had in myself up to that point disappeared. On top of that transition, my family and I made the decision to go through with a major surgery for me in hopes to better position my legs. It all sounded wonderful and when you’re being promised what seems like the world, you are in no position to turn it down, so we scheduled the surgery. I went into the hospital that day thinking that my life was going to change for the better, but instead, it turned into something worse than anyone could’ve ever imagined.

Courtesy of Dr. Gabrielle Ficchi

My body did not respond to the surgery as well as everyone hoped it would. I was supposed to be up and moving three weeks after I had the operation, but it was three months before I even got out of bed and was able to put any weight on my legs. I was supposed to participate in physical therapy every day and although the doctors tried to force my body to do what they wanted, every move was more painful than the last and so, instead of following their therapy program, I shut down and gave up. I felt like my body had given up on me and let me down. I felt like my world as I knew it was over. All the excitement and anticipation I had leading up to the surgery turned to anger and frustration. I pushed everyone away.

My family was running out of options on how to help me when my mom was told about a summer program that one of my friends had attended. At the time, my mom described it to me as a ‘therapy camp’ which didn’t make it sound very appealing. We took the six-hour drive to Newport Rhode Island with me kicking and screaming every step of the way. As it turned out, it only took two days for me to realize I never wanted to leave. For the first time in my life, I found an environment where I was 100% free to be myself. Everyone there had each other’s best interest at heart and wanted me to succeed. I realized I wasn’t alone in the challenges I had to face, there were people just like me who were going through the same thing and we were all there to help each other.

Courtesy of Dr. Gabrielle Ficchi

This was the first time I felt like I had complete control over my own life and felt that I could do anything I put my mind to. It was like my possibilities were endless. Sure enough, after participating in the program, I became completely independent in my daily activities and was able to live on my own and take care of myself. While that may seem like the greatest gift anyone could receive, what I got from that program extends far beyond my independence. I felt comfortable in my own skin and confident enough to go after the things I wanted. I went on to work there, establish a career path, meet my now husband and pursue my passions.

Courtesy of Dr. Gabrielle Ficchi

After that experience, I faced challenges that made me question myself at times, but I had the confidence to face them and a community behind me. Once I was able to define goals for myself, I set my sights on college. I remember attending my own IEP meeting for the first time in high school. The administrators at my high school wanted me to attend trade school, they did not feel that college was a practical option in my case. Armed with my newfound determination and ‘a hard head,’ I was able to shock everyone when I told them I had been admitted to college and was moving away. It was a defining moment for me, I put my mind to something and accomplished it despite anyone’s doubts. At that point life, I had yet to fully embrace my disability experience. I, like so many others, still thought that I should strive to be less disabled to succeed. I too was in a ‘cure’ mindset. Not acknowledging my disability was my way of fitting in, i.e using my walker instead of the wheelchair that has afforded me so much more freedom or only going places that were accessible instead of standing up for myself. All of these things were a reflection of the way I viewed disability which I now understand was a result not of my diagnosis but the way society viewed disability as a whole. It was not until I expanded my horizons and immersed myself into the disability community that I was able to shift my way of thinking.

Courtesy of Dr. Gabrielle Ficchi

My college experience was great, I made friends, worked hard and was able to receive my PhD in rehabilitation and mental health. I am fortunate to work as a therapist and professor to help individuals find their path and purpose. Perhaps the most influential piece of my time at the University of Arizona was finding a community of people who understood me and gave me the opportunity to fortify my identity as a proud, disabled woman. However, with that came the realization that just because I was learning to accept and embrace myself, that did not mean others in my life would follow suit.  It’s not a coincidence that for the better part of my adult life, based on appearances, people have underestimated my abilities, and the same is true for so many others like me. Part of this is due to fear of the unknown and part of it comes from our preconceived notions about things we think we understand. Most times, disabled people don’t have a voice and from my experience when we do, the able-bodied people in the room or in the situation are looked to for validation or reassurance. Experiences like asking one of my able-bodied counterparts what I would like to eat at a restaurant instead of addressing me, having someone stop my friends and I on the sidewalk to ask if they can pray for us, because they assume we need to be cured or fixed.

Courtesy of Dr. Gabrielle Ficchi

I have had so many people tell me ‘it’s good to see you out’ or congratulate me for completing the simplest tasks. To be honest, people are often impressed when I do the simplest things. But, would they be impressed if an able-bodied person got out of bed, got dressed or went out? No, because that’s to be expected. On the other hand, when a disabled person does those things, it’s suddenly inspirational. For example, when I was at my job the other day, a new client came in and said, ‘Wow you’re disabled and a doctor? That’s awesome, good for you!’ Now, at first glance, some of you may think well, she was being nice. Here’s the thing, her shock that the doctor she was about to see was also a wheelchair user comes from the fact that when she thinks of disabled individuals, she does not presume competence but rather inferiority to able-bodied people. So, she was in disbelief. Would you go into an appointment with an able-bodied doctor and say, ‘Wow you got your PhD, that’s great!’ Probably not. These ideas come from the ableist society that views disability as less than and supports the preconceived notion that disabled people can’t live full well-rounded lives, have friends, live independently, get married, have lucrative careers, etc. However, we can, and we do, every day. My life has afforded me so many opportunities and I would not change a thing.

Courtesy of Dr. Gabrielle Ficchi

I hope to continue advocating for the disability community, to spread this message of equality and encourage others to do the same. My dream is to run a counseling and rehabilitation program for those with disabilities. The reality is there are flaws in the current rehabilitation system that puts families on the back burner without giving everyone the support they need. Much of my experience is the exception rather than the rule.  It’s time to ask where these ideas of disability meaning less than stem from, and work to reframe how society views disability. Try asking yourself, ‘Why do I think this way?’, ‘Where am I getting information?’, and ‘How can we do better to ensure people with disabilities are not meant to feel like they are on the outside looking in and are empowered to live life with the equality we all deserve?’”

Courtesy of Dr. Gabrielle Ficchi
Courtesy of Dr. Gabrielle Ficchi

This story was submitted to Love What Matters by Dr. Gabrielle Ficchi from Tucson, AZ.  You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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