I’ve known for a long time that my post-college life would be a little unorthodox compared to that of my friends. While most people who graduate either enter the workforce or go to grad school, anyone with SMA (or an equally severe physical disability) knows that finding employment can be a little more difficult. As someone who depends on Medicaid to help cover my caregiving costs, the rules associated with that agency limit the amount of money I’m allowed to make each month.
Simply put, it’s a pretty sucky system, and it’s one that millions of people deal with regularly. The question then becomes: How do I reconcile my desire to be an independent, working adult and still retain the benefits I need?
There are many ways to answer this question, and many SMA adults will have different perspectives. For me, the key has been not only maintaining an active and productive lifestyle since graduation, but also seeing the benefits of not having to obtain a traditional job. I know plenty of people who flat out hate their jobs and do them only to make money. In my situation, I’m actually free of that burden, and I can instead do the work that I want.
I’ve known that I wanted to be a writer for a long time. I wrote stories as a kid, and drew up amateur comic book sketches on notepads. Once I began to consider this idea more seriously, I did writing workshops in high school, and I was able to explore which specific areas I could excel. This eventually led me to doing a lot of journalism in college, working as a writer and editor for my school newspaper as well as writing movie and TV reviews for entertainment websites. I found my niche by exploring as much as I could, and the experience I acquired as a student helped me to treat writing as a legitimate job.
By the time graduation came, I knew it would be a slow process at first. But now I was free to read and write as much as I could ― and that’s exactly what I’ve been doing. I read at least a couple of hours every day, be it memoirs, fiction, graphic novels or magazines. This is one of the most crucial parts of my daily life, as it keeps my mind active and allows me to develop creative solutions to whatever problems I might encounter. I’ve also discovered other disabled writers in recent months, some who even have SMA, such as author Ben Mattlin and blogger Jon Morrow. Reading about how these people have overcome the same obstacles that I currently face has been tremendously educational.
The other major component of my daily routine is the writing. Writing this column has helped me maintain a regular schedule; it comes with deadlines just like any job. I also do other freelance work and make sure to devote time to my creative writing. While many writers struggle to make enough money from freelancing, it works great for me, as I make just enough so it doesn’t interfere with my Medicaid.
Lastly, I’ve found that working without being paid has more benefits than one might think. Once I got to a point where I was making some money freelancing, I still wanted more to do. I write this weekly column and do blog posts for a nonprofit whenever they send me assignments, but I’m still left with plenty of time on my hands. So I decided to volunteer with my alma mater’s student newspaper, where I worked as a student during four years of college. I’ll be assisting that paper staff and other student media departments as a writing coach, and it’s something I’m looking forward to very much. While working from home certainly has its benefits, I’m still a people person and need time in group settings. And by volunteering, I’m able to set my own hours and do the work I enjoy.
I’m not sure there ever will be an ideal system for adults with disabilities, as government bureaucracy is something that will always be there. But that doesn’t mean we can’t look on the bright side of a broken system, where the real opportunities await us.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.