Dear Person with Disability: Money Matters, but Not Always

Dear Person with Disability: Money Matters, but Not Always

Dear (young) person with disability,

I hear you. You’re having a tough time with money. Maybe you’re having difficulty finding a job. You probably have the qualifications — you may have gone to college and had internships here or there — but no company will accept you. You blame it on your condition, and maybe that really is the case. I know, because my husband has experienced this kind of rejection firsthand. Here in the Philippines, the sad reality is that few employers will take on people whom they perceive as liabilities, people with disability (and pregnant women like myself) included.

Let me tell you something about myself: I am an artist. I graduated with a degree in broadcast communication, but my truest passions are in the visual arts. I’ve brought a bit of that into the business my husband and I started. From reselling bracelets and charms, we have ventured into designing our own jewelry. I enjoy drawing jewelry pieces and envisioning what they would look like once crafted in metal.

Because of my passion, I have amassed a LOT of drawing tools and art supplies. Brush pens, colored pencils, papers, you name it. I have also been crazy about fountain pens since 2012 because I love to write, and I do not want the art of handwriting to be forgotten. In fact, I have more than 20 pens just sitting in my drawer, waiting to be inked up. (Usually, I use just two or three at a time.)

My husband supports my artistic endeavors, even though he is not that much of an artist himself. I sometimes fear that he may not always fully understand why I need that new set of colored pens when I probably already have a dozen other sets in different colors. Nevertheless, he remains supportive. Even before we got married, he loved surprising me with art materials or fountain pens, even if it meant digging deep into his savings.

What they say about artists is true to an extent. It’s tough to make a living from art. Although I believe I’ve managed to strike a good balance between business and passion with our jewelry business, I often find myself yearning for my other art-related hobbies such as hand lettering and calligraphy.

Creating new hand-lettered works can be really inspiring, but sometimes I can’t help but feel discouraged because I can’t seem to get anything financially out of my hobby. It also seems sometimes as if people don’t appreciate my work, and that can be equally discouraging. So, my art materials may sit in a corner for a long time, untouched, while I attempt to head off on more “financially fruitful” pursuits.

You, person with disability, may see all these people your age rising up the corporate ranks, and as a consequence, you may feel insecure. You may begin to question where you are at the moment. You may even feel angry at the world for seemingly depriving you — and only you — of the opportunity to reach your dreams. As an artist, I’ve felt the same way, too.

Perhaps your passion is all about advocacy (much like HAPLOS youth members, my husband included). But after spending a great deal of your time on advocacy work, you may question whether it’s the “right thing” for you to do. After all, having a chronic illness is no walk in the park — and treatment costs money. (My husband spends thousands of pesos on factor IX whenever he gets a bleed.)

You worry about whether you’ll be able to thrive if your present caregivers are no longer around.

I understand. Such worries are natural. But please don’t let these thoughts get you down. Listen to what they might have to tell you. Maybe there is a golden opportunity lying beneath the surface of what you’re passionate about, you just need to dig a little deeper and figure out what it may be.

Perhaps starting fresh may help. Seek comfort in a new hobby. Try out other activities. Who knows, a simple hobby or craft could transform itself into a living. Don’t stress too much about making it happen. Focus on learning and improving yourself, and let it come organically.

If it comforts you, focus on how expanding your present skill set allows you to transcend your perceived limitations and live a much fuller life.

Whenever I find myself feeling discouraged about pursuing the arts and crafts I love, I remind myself of these things.

The need for money is always going to be there. But it’s not the be-all and end-all of how we live or what we do. Fulfillment matters. Getting to do what you love and love what you do matters.

Sincerely,

A thriving, neither-poor-nor-rich, but meaning-seeking #HemoWife/Artist

***

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.

Alliah Czarielle, or Cza for short, is a life partner to a person with hemophilia and epilepsy. Her life’s dream is to enjoy a happy and contented life with her family, while pursuing her own passion for arts, crafts, entrepreneurship, and fine jewelry. She is a strong advocate for equal rights and support for people with disability, as well as people with mental illnesses, being a struggler herself.
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Alliah Czarielle, or Cza for short, is a life partner to a person with hemophilia and epilepsy. Her life’s dream is to enjoy a happy and contented life with her family, while pursuing her own passion for arts, crafts, entrepreneurship, and fine jewelry. She is a strong advocate for equal rights and support for people with disability, as well as people with mental illnesses, being a struggler herself.

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