Gabriella (Gabby) DiSalvo is pursuing her dream of cooking professionally and growing her food and disability advocacy blog, Cooking on Wheels. In 2006, Gabby was diagnosed with a rare form of myofibrillar myopathy (MFM), which causes all of her muscles to be extremely weak. However, that hasn't stopped her from pursuing cooking, blogging, and working towards her degree at the University of Connecticut (UConn), all from her TiLite rigid manual wheelchair and her purple Permobil F3 Corpus
Born to be a foodie
I was born and raised in Staten Island, New York. I have a twin brother named Joe. Growing up I was always very proud to share that I am the older twin.
As a kid (and even now) I was dog-obsessed, but unfortunately my brother is severely allergic, so I do not have a furry friend of my own right now. Growing up, I was a Girl Scout, attended dancing school, and was the manager of my school's girls’ basketball team. Most importantly though, I have always been an avid foodie. At 5 years old, I would feel offended at a restaurant if a waiter/waitress gave me a kid’s menu instead of an “adult” menu.
As a kid, my family and I went on a vacation to Disney World. While there, we went to this interactive theatre experience where the audience had the chance to talk to Crush, the surfer-dude sea turtle
from Finding Nemo.
Crush asked the kids in the audience what their favorite foods were. Most of them said traditional answers – chicken fingers, pizza, ice cream, etc. When it was my turn to answer, I said something very different. I proudly responded, “My favorite foods are baked clams and shrimp scampi!” (Of course, at 5 years old I did not realize that telling a sea turtle this would be such an issue).
Crush was quite offended and said to me, “Duuuddee those are my friends!” and yet I responded, “But they’re delicious!” Even at 5 years old, I knew I had a passion for food. Who would have thought that this passion would someday become my career?!
Cooking on wheels
I am currently a junior in college at the UConn, where I am part of a special major program called an individualized major, which is essentially a “design-your-own” major. It allows students create their own plan of study as long as it applies to their long-term goal. My major is Disability Studies in Media and Food Culture, with a Personal Brand Entrepreneurship Minor.
I am also a Teaching Assistant for UConn’s UCan Cook cooking class. Here, I can spend time doing what I love (cooking), while also practicing instructing others on cooking techniques.
I just started my first job official this semester through UConn. I am working as a Kitchen Assistant in one of the dining halls at UConn. This is my first time cooking in a professional kitchen. I am not cooking full recipes on my own. I am mostly doing “prep-work” for the chefs, but this is the first opportunity I’ve had to work in a professional kitchen with chefs who have my shared passion for the culinary industry.
Cooking on Wheels’ mission is the reason for my major and aligns with my long-term goal. Cooking on Wheels is a food and advocacy blog that I run on social media. It has given me a space to share adaptive cooking techniques, create original recipes, and share about issues and achievements within the disability community.
Seeing and creating disability representation in media, especially in children’s media, is a passion of mine, because growing up I always wished to see someone who “looked like me” (disabled) on TV.
Through my blog, I have become so passionate about these components of my life. They have led me to know what I want my career to be. I want to create my own cooking show — similar to CBS’s Rachael Ray Show or Food Network’s The Kitchen. However, the unique part about my show is that I’d like to incorporate some kind of advocacy component that allows me to continue sharing my adaptive cooking techniques. Additionally, I hope to include special guests on my show who have made an impact within the disability community.
A rare diagnosis
I was born with a rare genetic, neuromuscular disease called myofibrillar myopathy (MFM). This is a low muscle tone condition that affects my entire body. In simple terms, this means that every muscle in my body is extremely weak. Typically, MFM’s symptoms begin to appear for a person at around 50 years of age.
I exhibited symptoms since birth/early childhood, which is very rare. As of 2006 (when I was diagnosed), there were only 3 recorded cases of MFM found in children, however these children all had other conditions, like heart or neurological conditions. I was the only one who solely
had muscular weakness.
As a twin, I always wanted to be like my brother, so when he started to walk, I wanted to as well. I learned to walk with a walker at 3 years old, and then walking independently at 4. Due to my muscular weakness, I would walk in a swaying motion because it was much more challenging for me to shift my weight with each step.
As I got older and continued to grow, it became harder for my muscles to “keep up” with me. My swaying became more pronounced, which caused me to develop scoliosis. I used a back brace to try to correct the curvature, but this came with its own set of challenges. For my muscles, the brace was very heavy which made walking more difficult, so I tried to not wear the brace as much.
Unfortunately, my curve continued to progress, and at 10 years old I needed to have a spinal fusion surgery to permanently straighten the curve. The operation was a success, but due to my muscular weakness, the surgery also eliminated the ability for my swayed walking. Since then, I have been full-time wheelchair user.
Maintaining independence
Currently I use two wheelchairs, each about 50% of the time. I use an F3 purple powerchair and a rigid frame TiLite manual chair, with a SmartDrive dial. I use my powerchair to navigate UConn’s massive campus, go grocery shopping, and have the independence to go out wherever and whenever I want, without assistance from others.
I use my manual chair in smaller spaces like my dorm room, to move around my house (not accessible enough for a powerchair), and when I want/need to go in a car (I do not have an accessible vehicle for my powerchair). Both wheelchairs come with their own set of benefits and challenges, but I am forever grateful for the independence and freedom that they give me.
I have only had my powerchair for a couple of years, and it has given me so much independence and freedom. For example, I am now able to take public transportation to go shopping at my favorite stores, Aerie and American Eagle.
Rapid fire questions:
What is your favorite season and why?
My favorite season is summer because I HATE the cold weather. My brother and I always laugh because he goes to a school in a relatively warm climate (University of Tennessee) and loves the cold, and I go to a school in a VERY cold climate (UConn) and hate the cold, Clearly, we are
complete opposites.
If you could have dinner with one person, dead or alive, who would it be?
I wish more than anything that I could have had dinner with Judy Heumann. I had the honor to meet her at an event in California (Rollettes Experience) in 2022. Although we only spoke for a couple of minutes, I had the opportunity to ask her some questions about her life and advocacy experiences.
The words thank you will never be enough to express how grateful I, and so many others are for the work that Judy Heumann has done. She paved the way for disabled people in a world that believed that we should not exist. She was an unstoppable force of nature. Her fearlessness will always be a reminder for me to keep breaking down barriers and advocating for representation.
For Disability Pride Month this past July, I made a recipe in honor of Judy.
What is your favorite movie of all time?
I’m a very indecisive person and can’t choose just one favorite movie, so my top 3 are Grease, Wicked, and – a new addition – Out of my Mind!
What was the first concert you went to?
A Shawn Mendes concert in 2017
Content Marketing Specialist - Permobil Americas
Before joining Permobil as content marketing specialist, Hawken was a content strategist for the nonprofit CureDuchenne, creating blogs, emails, and social media content for the Duchenne muscular dystrophy community. For most of his life before that, he worked as a journalist, writing feature stories for BioNews, and reporting on the video game beat for The Washington Post. Following his passion for writing, Hawken graduated from journalism school at the University of Southern California