From the Community: For many people, tech is all about convenience, for me it’s a lifeline

Published: 12/13/2019 9:17:14 AM
Modified: 12/13/2019 9:17:02 AM

My wheelchair is not the only thing that has helped me get where I am today.

I am a college junior at the University of Massachusetts Amherst, and if all goes according to plan, in less than 17 months, I’ll roll my power wheelchair across the stage to receive my degree in English and journalism.

But my college career has been less than conventional, and I’ve had to work harder than most. When I was 10 months old, I was diagnosed with a debilitating neuromuscular disability called spinal muscular atrophy (SMA), an extremely rare autosomal recessive disease.

One in 40 people are expected to be carriers and each parent has to be a carrier to have a child with SMA. The odds of two carriers meeting and having a baby are small, the chance of the recessive gene being inherited to impact the baby are even smaller.

Essentially, I received the genetic short end of the stick.

At age 20, I’ve been intubated more times than I care to remember, and I will always be haunted by the feeling of waking up from anesthesia while slowly coming to the realization that I would be unable to speak as a result of the tube blocking my vocal chords and airway. While life can often be a nightmare, my schoolwork has always been a source of solace. It’s the one thing completely in my control and one of the few parts of my life that is all mine.

And I couldn’t have done it without the access to technology that I have had.

Technology today is a source of convenience for able-bodied individuals, but for the disabled, it is a lifeline. I consider myself lucky enough to be born in an age where technology has grown exponentially, because it has connected me to the world and enabled me to pursue my one true passion in life, writing, when I didn’t have the physical means to.

When I was in first grade, because small children have a tendency to pass colds around like pencils, my parents decided that I would attend school through telecommunication means. Throughout elementary and middle school, I used a Polycom system, a camera positioned on an antiquated TV. It was so old and clunky, it made the manual typewriter look as modern as a MacBook. Each morning for eight years, my school aide would help me log into various classrooms so I could actively participate in the day’s lessons from home.

The summer before middle school, when everyone gets excited at the prospect of switching classes for each subject, my mom fought for me to do the same. As my sixth grade peers shuffled from math class, to science, to English, so did I, virtually, in a much more costly manner through calling into the various classrooms. For me to “call in” to my classes, each classroom had to have its own Polycom camera as well as a TV set and appropriate stand.

In high school, I moved on to a robot developed by Verizon, called VGo. Though it looks laughably antiquated now, this was a big breakthrough. The head of the robot contained a screen the size of an iPad mini, which showed my face in real time, similar to the Polycom camera without all the cumbersome pieces. The coolest part about the VGo was that I could control it remotely. I could join groups if I needed to, or turn to face the teacher at various areas of the classroom. It was almost, if not quite, as good as being there in person.

This technology gave me the opportunity to interact with my peers and to take part in activities in a classroom environment, which are equally invaluable experiences. Now that I’m in college, I participate in my classes with a mini-cam and computer, via Zoom. With the help of my classroom assistants, I’m able to engage in conversations, workshop my writing alongside my fellow students and maintain as close to a physical presence as possible without actually being in the classroom.

As my SMA progressed, it became clear that I would never be able to type on a traditional keyboard. And since I was 4, I have been using a trackball in conjunction with an on-screen keyboard to type. As you can imagine, it can be a painstaking process to type lengthy papers and articles by clicking on each letter individually. However, as I’ve gotten older and technology has advanced, it has become a much less cumbersome and more rewarding experience to shape an article and mold the words into something that is entirely my own — like I’m doing now as I write this essay.

I have always had to fight for the opportunity to succeed. And technology has provided me with the necessary armor and motivation to appreciate the true value of an education. Because of my less-than-typical situation, there were many instances when I could have been denied an access to education. But technology has helped to provide me access where I otherwise wouldn’t have had any. For disabled people, the system has been set up for them to fail. The access to technology makes it easier to prove the stereotype wrong.

The first thing that people see when I meet them is my wheelchair, and the first assumption they may make is that I must not be mentally cognizant. But I’m here, I’m not going anywhere. And I’m ready to work.

I have spent the majority of my teenage and adult life working to prove myself on the same playing ground as everyone else, in spite of my physical handicaps. And two and a half years ago, it earned me acceptance at one of the top public universities in the country.

A long time ago, I realized that I had a great excuse for not doing my homework or failing a test. Without the access to technology that I have had, it would have been impossible not to give into the stereotype. I was lucky enough to never have to face that harsh reality that so many others before me have.

Joanna Buoniconti is a senior at the University of Massachusetts Amherst.


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