Learning the Truth About Privilege, and Being Grateful for Ours

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by Alliah Czarielle |

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I recently came across an NBC News Think essay about the oft-overlooked privilege of being able to focus on one’s studies while in college. It reminded me of how my parents supported me through my own college years, and how I failed to fully appreciate how fortunate I was until I saw the flip side of things.

Now that I’m married to someone with hemophilia and a seizure disorder, and we’re struggling to run a business without much help from others, I realize what a huge part privilege plays in people’s accomplishments.

My husband, Jared, is systemically deprived of resources and opportunities he could use to help provide for his family. Not all companies will employ a person with disability, and even if they do, the salary is often not enough for someone who has a family to support. We turned to entrepreneurship so we can be more flexible and take some time off when we get sick. But entrepreneurship can also be tricky without an ample amount of funds.

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Running a Business From Home With a Spouse Who Has Hemophilia

Looking back, I was quite privileged as a college student. Although not as privileged as my wealthier schoolmates who had their own cars, the latest gadgets, and the finances to attend every social event, the important thing was that I never needed to juggle work and academics to afford my university degree. When I did choose to work, I got to keep the money I earned. I then happily spent it on affordable gadgets and other nice things.

As a communications student, I depended a lot on gadgets, particularly my camera and laptop. While my mirrorless camera was far from the best (other kids could afford full-sized DSLRs and extra lens kits), looking back, I was lucky to even have a camera at all. Plus, I even had two laptops at one point! My first college laptop broke, and my parents replaced it. Yet I eventually managed to get my old one repaired, so I got to use that one as well. I had options!

A year before I graduated from university, my mom battled lymphoma for the second time. She was in a more critical stage compared with her first encounter with the disease. We spent a lot of money on treatments. Gradually, our finances began to drain. For the first time, I approached my university for financial help. I also had to open up to my professors about my mental health (one of the hardest things to do when depressed) because I was becoming increasingly emotionally unstable.

Thankfully, my mom got better. I graduated from college and started work at a nice small company. It was a startup with a wonderful mission. The people were great, too. I was idealistic at the time and thought I could use this as my starting point to earn, save, build my dream enterprise, and live a comfortable life.

But months of being paid close to minimum wage with no raise in sight eventually chipped away at my idealism. Medical and food bills piled up. I slowly, begrudgingly awoke to the thought that I was trapped in the rat race and always would be, unless I took a higher paying job or started my own business. Both of these options seemed incredibly hard — the former, because working an office job exhausted me emotionally; the latter, because I didn’t have a lot saved up.

After my mom passed, I suddenly found myself doing things on my own. My mom used to have a good position in an office, and could easily recommend me to work for her colleagues. But after she’d passed, this was no longer possible. I applied for jobs the traditional way. “Working my way up the ladder” became a solid reality for me.

Now I know that behind many a “rags to riches” story is an unspoken element of privilege — other people providing financial assistance, political leverage, or any sort of help. Acquiring the ability to do normal things despite a medical impediment requires monetary privilege so that one can afford assistive devices, medication, or surgery.

My husband and I are not wealthy. So we merely strategize to survive, and gradually save up for our future.

Over the years, we’ve learned to be thankful for the small privileges we do have. I’m glad we still have a source of income, and assistance from a hemophilia organization. I don’t want to take these things for granted.

Even if our business is still small, we are happy to use our online channel as a platform to help others whenever we can. Living without privileges can be tough, but when the underprivileged stand in solidarity, we can earn a better shot at improving our lives.

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Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

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