Finding Independence With 22q Deletion Syndrome One Ride at a Time

Living with a disability means the path to independence may look different than others might expect. Sometimes, it looks like opening an app, typing in an address, and having the freedom to leave the house whenever you want. As someone living with 22q, taking control of how I move through the world became one of my proudest achievements.

Hi everyone! My name is Justin G. I’m a 30-year-old from Boston, Massachusetts, and I have both 22q Deletion Syndrome and a disability.

If my name rings a bell, it may be because of my online presence! I’m well known on Twitter/X, where my videos have reached more than a million views, and I’ve gone viral many times. I use my platform to share my experiences, connect with people, and help bring more awareness to 22Q and disabilities.

One part of my journey that I’m especially proud of is learning how to Uber on my own. For me, Uber isn’t just about getting from one place to another; it’s become a symbol of independence.

One often-overlooked challenge of navigating life with a disability is the simple freedom to come and go independently. While I'm truly grateful for the people I could count on for rides, that reliance came with its downsides. There were times I missed out on events simply because a ride fell through, and that could leave me feeling a bit tied down. As I grew older, my desire for more control over my transportation became impossible to ignore. So, I started looking for solutions and soon discovered a way to unlock more freedom in my life: ridesharing!

At first, I was nervous. I didn’t know how to request a ride or how everything worked. I worried about getting from one location to another and whether I could manage the process independently.

But I learned.

I started by taking it one ride at a time. I learned how to open the app, enter my destination, request an Uber, check the driver’s information, and communicate with drivers when I needed to explain my needs.

And now, I Uber everywhere! I Uber to my grandparents’ house, to my day program, and even to social events. When necessary, I'm not afraid to communicate with drivers about my needs so they know how best to help me.

When I think about how nervous I was in the beginning compared to where I am today, it makes me really proud. Something that once seemed overwhelming has become part of my everyday life. I hope my story can inspire other people who have 22q or another disability and might be nervous about doing something independently.

You don’t have to figure everything out overnight. You can learn one step at a time, ask for support when you need it, and keep building your confidence. I started out fully dependent on others to get from one location to another, but now I can request my own ride wherever and whenever I want. That’s something I’m really proud of.

And this is just one part of my journey toward becoming more independent!