Looking at Success Through a Wider Lens

Society often defines successful people as those who have achieved several traditional milestones. Those milestones tend to include obtaining a college degree, becoming financially independent, buying a home, getting married, and raising children.

If you’ve achieved anything on that list, congratulations! Please know that these are all praiseworthy accomplishments. My goal for this column isn’t to diminish the value of anyone’s successes but rather to explore some additional ideas of what it means to be successful, to look at the concept of success through a wider lens that includes a broader range of abilities, skills, and desires.

Disabilities and chronic illnesses like SMA tend to complicate many aspects of life. The successes listed above are often no exception. That’s not to say those things can’t or shouldn’t be done, but for those with disabilities, they may require more time, effort, support, creative thinking, and strategic planning.

Financial independence can be especially difficult for those in disability communities. Compared to those who aren’t affected by a rare disease, people with rare diseases and their families are under a much heavier financial strain due to medical needs. This story shares the findings of a study conducted by the EveryLife Foundation for Rare Diseases which determined that the financial burden endured by rare disease populations in the U.S. totaled more than $900 billion in 2019.

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December 14, 2020 News by Steve Bryson, PhD

Financial Burden of SMA Much Higher Than Other Conditions, Analysis Shows

Because of obstacles like fatigue, lengthy medical routines, necessary accommodations, appointments, and lack of accessible transportation, many people with disabilities struggle to find work or are unable to work enough hours to cover both their regular expenses and medical bills. Additionally, family caregivers frequently face workplace discrimination due to their caregiving responsibilities.

This combination of high financial demands and limited job opportunities can necessitate disabled individuals’ reliance on assistance from loved ones, friends, government-funded programs, and nonprofit organizations.

I want to note that disabled people can achieve success in their jobs even if they don’t obtain financial independence.

Personally, I consider my job as a writer and manager at Bionews to be a great success even though I still depend on others to meet many financial needs. That’s primarily because my chosen career offers me a sense of fulfillment. I’m blessed to be a part of a company that readily accommodates my disability, acknowledges my contributions, and encourages me in my writing and leadership pursuits. Being able to say that I love my job and my co-workers is an incredible accomplishment.

One of the most important factors in determining what can be counted as success is considering an individual’s desires. Not everyone wants to achieve success in a traditional manner. Instead, some set their sights on different goals that better align with their differing views of success and what they hope to accomplish in life.

I mentioned buying a home as an example of a traditional milestone. This is something I’ve never done, and I’ve written previously about my decision to live at home with my family. While living with my parents is practical because my mom is my primary caregiver, the reason I do so is simply that I want to. I enjoy having family around to talk, watch movies, share meals, and more. Buying my own house wouldn’t align with my desires.

If you’ve been reading my column for a while, you might have noticed that I have close relationships with my family. Those relationships bring me joy, and living in the same house allows me to easily maintain those cherished relationships. Everyone’s needs and desires are different, but for me, the results of my decision to remain at home are another success.

Cystic Fibrosis News Today columnist Bailey Vincent can also provide some crucial wisdom about success. In one of her recent columns, she says, “Should mobility be the barometer for success? No.” That line is actually what inspired me to write about this topic.

Bailey has been experiencing decreased mobility in her hands, so she reached out to friend and SMA News Today columnist Kevin Schaefer. Like me, Kevin has SMA and experiences a lack of mobility throughout his body, including his hands. That doesn’t stop either of us from being successful though. It doesn’t stop Bailey either. It might make achieving success harder at times, but Bailey has learned that a person’s level of mobility isn’t equatable to their level of success.

But if mobility isn’t the barometer for success, what is? I think that depends on who you’re talking about. There isn’t an instruction manual for achieving success. Success could be any of the things I listed at the beginning of this column, or it could be something else entirely. Success could be as simple as doing what makes you happy. There are days when my greatest success is breathing.

Whatever form your success takes, I’m proud of you, and I hope you are too.

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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.